tag:blogger.com,1999:blog-61902585299692386062024-03-12T18:03:48.683-04:00Loving With Chronic IllnessMayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.comBlogger182125tag:blogger.com,1999:blog-6190258529969238606.post-83385134248132446182012-01-15T12:25:00.002-05:002012-01-15T23:22:28.343-05:00A Candid & Moving Guest Post: Caring For A Loved One With Chronic Illness<br />
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<b><span class="Apple-style-span" style="color: #741b47;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">CARING FOR A LOVED ONE </span></span></span></b></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-weight: normal;">Maya has asked me to write this post based on my experience caring for my husband Bernie who passed away at age 58 in February, 2007. Bernie was diagnosed with</span></span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><a href="http://www.mult-sclerosis.org/secondaryprogressivemultiplesclerosis.html"><span style="text-decoration: underline;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">secondary progressive multiple sclerosis</span></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">in 1999. Multiple sclerosis (MS) is a progressive disease of the central nervous system that is sometimes called “the mystery disease” because there is no known cause. It is not even known if MS is one disease or several different diseases, but it is classified as an autoimmune disease. What is known is that the myelin sheath that surrounds the nerves is damaged. As the disease progresses, so does disability.</span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Although I suspected something was wrong at least a year before Bernie decided to seek medical attention, he was in denial of many of the symptoms which were already apparent to me. The most obvious symptom was his frequent loss of balance that he would attribute to a “bum knee”.</span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When a family member is living with a chronic illness it impacts everyone in the family. This impact can be minimal or severe and everything in between. It can be emotional, financial, social and physical. These factors are different for every family member. For me the most difficult thing was watching this disease take everything from my husband. It totally stripped him of all quality of life and, at the end, he could not even voluntarily move a muscle below the neck. It was an eight year spiral toward total disability and death; it was very hard to watch.</span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Shortly after Bernie was diagnosed, I joined a group for family members of newly diagnosed patients run by the </span></span><a href="http://www.nationalmssociety.org/index.aspx"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">National MS Society.</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> I suggested to Bernie that he join a group for newly diagnosed patients, but he refused. He felt that “groups or therapy” were not for him. I didn't push this because he was not someone who could be convinced to do something he didn't want to do. Interestingly, when I came home after the first meeting he wanted to know what I talked about. I told him it was all about me and that if he had any curiosity about what a support group does he should try one. He never brought it up again. A few months later I joined another support group run by the MS Society which I am still involved with. This group, as well as my daughters and close friends, helped me through very trying times. Without these supports I’m not sure I would have come through so well. Honestly, although support from family and friends is profoundly important, I still felt that no one outside of the support group truly comprehended the stresses in my life. I often say “my support group saved my life.” </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Depression, sadness, and anxiety also impacted my life. I didn't realize it until I was watching TV one evening. I knew it was something I would have normally found hilarious, but I didn't laugh, chuckle or even smile. The next day I called my doctor, made an appointment, and immediately started taking an antidepressant. A month later I definitely started feeling like myself again. Just like the commercial, I felt as if the dark cloud that was hanging over my head moved away. There were still times that it was just so heartbreaking and overwhelming that I would have a good cry. However, I didn’t have that constant lump in my throat and after I let it out I would feel better. We were both depressed. Bernie refused to take antidepressants, insisting it wouldn't help him. This made me angry - how could he know if he didn't try? <span class="Apple-style-span" style="font-size: x-small;"> </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When Bernie was healthy he could be an angry person. After he became ill I told him that if he was angry he would have to find some way to cope other than taking it out on me or I would leave him. It was that simple for me. I told him I had every intention of sticking with him no matter how bad things got because I loved him. I told him he had the right to be angry, anxious, scared and frustrated. However, I wouldn't tolerate constant, consistent anger or emotional abuse. Sometimes he would be nasty and when I had enough I just had to give him a look or a sharp comment about his behavior and I would walk away. Shortly afterwards I would get an apology and it would be over. People would ask me “aren’t you angry about this disease or what is happening?” My answer was always “no”. I had tremendous sadness, but it did not make me angry. I did get angry at people who treated Bernie badly and, unfortunately, that did happen. </span></span></span><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The social impact of chronic illness can be devastating for the patient as well as their family members. Bernie had to retire in 2002. As his disease progressed, he began to cut himself off from the outside world. As it became more difficult for him to walk, he was increasingly reluctant to leave the house. He fought using a cane, then the walker, and finally a wheelchair. I understood how hard this was for him, but it was also difficult for me. When I had to get him somewhere and he wouldn’t use a wheelchair he would lean on me (he was 6’2” and I’m 5”5”). When we went out to dinner with friends we always tried to go early before it got crowded and tried to get a table close to the entrance. One evening we went out to a restaurant and he had trouble walking out. When we got home he told me he was “done”; that he would no longer go out anywhere - not to dinner, not to a movie, not to visit friends...nowhere. I was stunned. I was also angry and informed him that I was not going to stop having a social life because he had made this decision. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It was as if I had two lives - my life at home with Bernie and my other life without him. I began going out without him, but still invited friends to our home. I would make dinner until he had difficulty using eating utensils. Then he refused to eat with anyone other than with me or our daughters. He withdrew even more and would just sit in front of the TV from the time he woke up until he went to sleep. Bernie was a brilliant man who used to read the New York Times everyday and did the crossword puzzle in 10 minutes. He had no cognitive problems, but as I said earlier, he did suffer from severe depression.</span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We were fortunate that Bernie’s disease did not have a huge financial impact on us. We had excellent health coverage, good jobs, and good pensions. We had always lived within our means and therefore had no debt. However, people who are not as fortunate as we were can be devastated by the financial impact of illness. I don’t know what we would have done if he had not been able to retire with a pension and social security disability. When it became too hard for me to work and care for him I was also able to retire with a pension and retain our health insurance. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I've been asked many times where I get my strength and I honestly don’t know. It isn't from religion or faith, because I am not a believer. It may be from my upbringing. My parents and grandparents were all incredibly strong people. My mother became disabled after suffering a cerebral aneurysm at age 48. My father cared for her with love until she passed away at age 65. I was very close to my dad; he was the best man I ever knew and a wonderful role model. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When Bernie became totally dependent on me for everything it did change our relationship. In some ways it actually improved our relationship because we both realized we had to be more sensitive to each other. We did talk about this, and when either of us became frustrated, we learned to take a step back, take a deep breath and discus the issue before lashing out. It wasn’t perfect, we both had our moments, but it worked. We had dinner together almost every night, continued to enjoy each others company and were able to make each other laugh right up until the end. Even though Bernie’s illness was very hard on me, I can look back on it now with no guilt and no regrets. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Maya asked if there was one message I could send to all the medical professionals in the world, what would it be? Please listen to your patients and their loved ones. Don’t dismiss their needs especially when it is about their quality of life or physical pain.</span></span></span></div>
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<span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sue Diamond</span></span></b></span></div>
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<span class="Apple-style-span" style="color: #6aa84f;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I'm proud to say that Sue Diamond is part of my family and one of the strongest women I know. </span></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sue, thank you for opening your heart to us and for having the courage to tell your story. Bernie was so lucky to have you.</span></span></i></span></div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-84430990015106861862012-01-09T20:58:00.004-05:002012-01-10T11:36:37.178-05:00A Promise To Myself<br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">On February 7, 2011 in a blog post entitled </span></span><a href="http://lovingwithchronicillness.blogspot.com/2011/02/after-storm-here-i-am.html"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">"After The Storm, Here I Am"</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> I wrote:</span></span></div>
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<span class="Apple-style-span" style="line-height: 18px;"><span class="Apple-style-span" style="line-height: normal;"><span class="Apple-style-span" style="color: #3d85c6;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">"</span></span></span></span><span class="Apple-style-span" style="color: #3d85c6;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I'll make the most of this year, whether my body cooperates or not. In fact, 2011 already feels like a turning point. I'll soak up experiences and make memories whenever and wherever I can. I feel like the luckiest girl to love the people I love and for the knowledge that they will be there, even if things get bad again. Finally, I'm pursuing a career that will bring profound purpose to my life; a career that will make sense of this suffering."</span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">After a brutal flare that spanned all of 2010, my monthly</span></span><a href="http://www.orencia.com/disclaimer_popup.aspx"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> Orencia infusions</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> started kicking in last January, and in February I found relief. I've said it many times before, but this medication has been a miracle; it literally got me back on my feet and re-opened doors that pain had closed. </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Emerging from a year-long flare was an experience that's difficult to explain. I</span></span>n some ways, it felt like coming home after many dark months away. I had gotten so used to not being able to do much - even walking a few yards was excruciating. Although I wanted to exercise when my medication started working, I wasn't ready. I was still extremely fatigued and felt it was best to conserve my energy for school and everyday tasks. More than that, I was terrified to injure myself and rock the boat that I had waited so long to be in.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKuDxeSYCc-ofLavx-2qeLKNGoOm2m9lLeKPy640xPLY-JC1_zuPeLcRN4FgWnMEdV4menMB4vWa40H2LDYpJZz8roaBuSs8bKhPEEesjpitpMznagcXbrmtmAAfA8qEHn85ZSpNvqo1EH/s1600/smiley-icon-gifs-040.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKuDxeSYCc-ofLavx-2qeLKNGoOm2m9lLeKPy640xPLY-JC1_zuPeLcRN4FgWnMEdV4menMB4vWa40H2LDYpJZz8roaBuSs8bKhPEEesjpitpMznagcXbrmtmAAfA8qEHn85ZSpNvqo1EH/s1600/smiley-icon-gifs-040.gif" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXNGycYRS2AniiAI7pc0KkDLnjv3LOLUVWfq0R2G64rQ5gyXeJXO9vuWQmZr5CfWgT10N4ueuPy4BtgEzcwt_y5oRkC_oHqjPl5UX9KzbAI6NuVl3-2l1bJTBnI1BR2VnlYf8sft34y-mf/s1600/smiley-icon-gifs-821.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Now that it's 2012 and Orencia is still bringing relief, I feel a profound responsibility to myself. This year I will exercise whenever possible. Recently I joined a gym with John who has turned out to be a fantastic motivator. Instead of a chore, it feels like we're going on fun little exercise dates.</span></span> Tomorrow evening I'm meeting with a trainer who is well-versed in pain conditions. I'm hoping to discuss my limitations and develop a unique fitness routine which will ideally give me greater confidence and lessen the chance of causing injury to myself. </div>
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Nobody knows what tomorrow will bring, especially not those living with chronic pain. I'm not saying it's going to be easy, but whenever possible, I owe it to myself (and to everything I've been through) to keep on moving...<br />
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Love,</div>
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Maya</div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com3tag:blogger.com,1999:blog-6190258529969238606.post-12538294525010521062012-01-03T15:58:00.000-05:002012-01-03T15:58:02.624-05:00Congratulations Are In Order!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNRPXHLHCYGqRuzKugS00DTvo1WMHo3fCFsxL-sljU3yzubyLW76Dag7_XwpmEKd0PiC0pb8S5lpIloTn0hRFDzr5U_1NObbsdfl81jR9YY7QkD4_fPp2E2FIrqrZMLYyCNYDv9Vio5rQ6/s1600/9f49b3ac266c11e19896123138142014_7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNRPXHLHCYGqRuzKugS00DTvo1WMHo3fCFsxL-sljU3yzubyLW76Dag7_XwpmEKd0PiC0pb8S5lpIloTn0hRFDzr5U_1NObbsdfl81jR9YY7QkD4_fPp2E2FIrqrZMLYyCNYDv9Vio5rQ6/s200/9f49b3ac266c11e19896123138142014_7.jpg" width="200" /></a>On October 2nd I featured <a href="http://lovingwithchronicillness.blogspot.com/2011/10/q-with-jodi-mckee-pregnant-and.html">this awesome interview</a> with my friend Jodi McKee (<a href="http://lovingwithchronicillness.blogspot.com/2010/12/spotlight-on-talented-jodi-mckee.html">click here</a> to read her spotlight from 2010). In this interview, Jodi eloquently discussed the experience of being pregnant and chronically ill - an important perspective for all of us who might start a family someday.</div>
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On December 9, 2011 Jodi gave birth to a beautiful, healthy baby girl. Both mom and baby are doing just fine. I wanted to send a <span class="Apple-style-span" style="color: #8e7cc3;"><b>HUGE CONGRATULATIONS</b></span> to Jodi and her husband Chris on the birth of their beautiful baby. She is perfect.<br />
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<span class="Apple-style-span" style="font-size: x-large;"><i>Welcome to the world, Olivia Blythe McKee.</i></span> I can't wait to meet you...</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">In October I also wrote about </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://lovingwithchronicillness.blogspot.com/2011/10/ibd-icons-new-awareness-campaign-from.html">"IBD Icons"</a>, </span><span class="Apple-style-span" style="color: #323232; line-height: 20px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">a national contest aimed at celebrating the achievements of those living with inflammatory bowel disease (IBD). Renowned </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">American Idol Contestant Casey Abrams partnered up with the </span><a href="http://www.ccfa.org/"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Crohn's and Colitis Foundation of America</span></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> (CCFA) to bring us this unique awareness campaign. </span><span class="Apple-style-span" style="border-collapse: collapse; line-height: 21px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">For every vote cast, Janssen Biotech, Inc. generously donated $1 to the CCFA for research and education. </span></span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I had the unique opportunity of interviewing Katie</span><span class="Apple-style-span" style="border-collapse: collapse; line-height: 21px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> Jeter-Boldt, a finalist from Kansas City, Missouri.</span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span><span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The winners of IBD Icons have been announced and I'm excited to report that </span><b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Katie was one of two winners</span></b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">!! </span></span><span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The 2011 IBD Icons are</span></span><span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><span class="Apple-style-span" style="color: #323232; line-height: 17px;"><a href="https://www.ibdicons.com/finalists" style="color: #22007a; font-weight: normal; line-height: 17px; text-decoration: underline;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Doug Yakich and Katie Jeter-Boldt!</span></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> On December 4, 2011 Casey Abrams re</span></span><span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">cognized the winners onstage at a concert to kick off the Zappos.com Rock 'n' Roll Las Vegas Marathon and ½ Marathon to benefit CCFA.</span></span><br />
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<span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: x-large;"><span class="Apple-style-span" style="color: #e69138;">Congratulations Katie!! </span></span></b></span></span></div>
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<span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span><br />
<span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #cc0000;"><span class="Apple-style-span" style="font-size: large;"></span></span>Keep up the incredible work; you're living proof that anything is possible not despite, but perhaps BECAUSE of chronic illness...</span></span><br />
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<span class="Apple-style-span" style="color: #323232; line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Maya</span></span></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com3tag:blogger.com,1999:blog-6190258529969238606.post-18004233098515400942011-12-31T16:45:00.000-05:002012-01-10T10:03:08.230-05:00Happiest of New Years!<div class="separator" style="clear: both; text-align: center;">
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It's no secret that I've been absent from the blogosphere lately...and I do apologize for that. I've missed each and every one of you. But I know you guys will understand better than anyone that sometimes life just gets away from you.<br />
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About two weeks ago I finished up my first semester of my final year at Columbia University School of Social Work. Whew! Juggling classes and an intense internship consumed most of my time and energy this fall, especially during midterms and finals. Now that I counsel my own clients, I'm humbled by the responsibility I've been given. I have the opportunity to see beautiful children and their families from week to week; to learn about their stories, to provide them with tools for success, and to watch them grow. Yes, it's a great responsibility, but it's something that I've worked toward for years and an experience I deeply value.<br />
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No matter what happens in my own life, these kids will show up. No matter how <i>I'm</i> feeling or what my energy level might be, they're depending on me. This year my days revolve around much more than just me. I'm grateful for this internship, but of course it has meant sacrifice in other areas such as this blog. The energy I've previously had for writing and keeping up with some of my favorite people (you guys!) has had to go toward school. Will this always be the case? Of course not, and I fully intend to write more in the new year. But I want you to know that I appreciate you sticking by me throughout this journey.<br />
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I thought today - the final day of 2011 - would be a good day to check in and to ask about your hopes for the new year. What are your resolutions? What are your dreams?<br />
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I, for one, have high hopes for 2012. I want to sing, laugh, dance, and create more; to travel, write, cook and spend time with the people I love. I plan on seeking new experiences, having more adventures, taking more photos, and sharing it all with you. Most of all, I want happiness, strength and, health for myself and everyone in my life.<br />
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<span class="Apple-style-span" style="color: #a64d79;">Wishing each and every one of you the best year yet...</span></div>
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<b><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="color: #674ea7;">HAPPY NEW YEAR!!!</span></span></b></div>
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Love,</div>
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Maya</div>
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<br />Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com5tag:blogger.com,1999:blog-6190258529969238606.post-8897189845912229282011-11-30T17:52:00.001-05:002011-12-06T16:06:46.947-05:00An Outing A Day Keeps The Blues Away<div class="separator" style="clear: both; text-align: center;">
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I've felt a bit down this past week. It could just be normal, seasonal "blues"...but it's more likely a result of my recent concussion. Yep, some girls just have all the luck.<br />
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Last week I returned to my field placement after a small, but wonderful Thanksgiving break. I had a delicious meal with my family on Thursday and headed up to Rochester on Friday to see John's family. It was a long weekend full of food and family; I never wanted it to end. But on Monday morning I was actually excited to get back to work. I couldn't wait to see the kids and to hear about their holidays.</div>
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Every day at about 12:30pm the students in Miss Rachel's "morning class" take a seat on the blue rug. They're tired from a day full of playing and each one anxiously waits for their parents to trickle in. I sat down on the rug to help zip up some coats and before I knew it, there was a 4 year old girl charging toward me with arms wide open. What was meant to be a goodbye hug turned into a catastrophe, as my head slammed backwards into the corner of a bookshelf. Suddenly my vision was blurry and the pain was overwhelming. If I were a cartoon character, I'm pretty sure there would have been little birdies circling around my head.<br />
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My amazing supervisor brought me to an urgent care department where I quickly developed a fever. The fever stumped them, but I know my body all too well. My autoimmune conditions have taught me to both expect and fear any kind of fever, but I'm sure it was just my body responding to the shock. They called an ambulance to take me to the hospital where I stayed for the rest of the day. My amazing mom drove up to be with me and, since John was still in Rochester, she also spent the night to make sure I was safe.<br />
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Prior to this concussion, things were going very smoothly. I was happy and settling into a weekly routine, Most importantly, I finally had my health under control. Now I'm dealing with daily headaches and fatigue, as well as severe and sporadic migraines. Although things are slowly returning to normal, the whole event really threw me for a loop - both physically and emotionally. It's normal to feel "off" after a hit to the head (there's even something called <a href="http://www.mayoclinic.com/health/post-concussion-syndrome/DS01020">post-concussive syndrome</a>). I could feel myself slipping into sadness, and was determined to fight back against it. I had come too far to go down without a fight.<br />
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There are days when a trip to the grocery store or a walk down the street is as much as I can manage... and that's okay. Be it a stroll through a nearby park, a trip to the coffee shop, or a quick visit with a friend, I've found that leaving the house when I'm feeling down is essential. It's easy to stay put when you're feeling crumby or sad, especially with the winter months setting in. But if you're anything like me, it's best to keep moving. An outing a day can be life-changing, so fight back against those blues. You'll thank yourself for it later.<br />
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Love,</div>
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Maya</div>
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<br /></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-33832577401242528962011-11-24T22:06:00.001-05:002011-11-24T22:26:19.621-05:00Happy Thanksgiving!!<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="color: #741b47;">I am infinitely thankful for my family, my friends and my incredible readers. I hope you all have a wonderful (and delicious) day with the ones you love.</span></div>
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<span class="Apple-style-span" style="font-size: x-large;"><span class="Apple-style-span" style="color: #e69138;"><b>HAPPY THANKSGIVING!</b></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy6LLefGGdnjEgF8alSzzq-qg7zFCMe0JkSsxij90X14ZZYV1KHP1Vx7pImUcV4NCTJBW8J-ygEy5NbnEQqt1HCLXMMy6_9oNFT0jiI1kmn2qijfM8w7Nggo7CfdHqn2i8-DcK8zfWBBNC/s1600/dividers20490.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy6LLefGGdnjEgF8alSzzq-qg7zFCMe0JkSsxij90X14ZZYV1KHP1Vx7pImUcV4NCTJBW8J-ygEy5NbnEQqt1HCLXMMy6_9oNFT0jiI1kmn2qijfM8w7Nggo7CfdHqn2i8-DcK8zfWBBNC/s1600/dividers20490.gif" /></a></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-67367193611414889622011-11-14T23:21:00.001-05:002011-11-22T20:46:00.162-05:00A Personal Essay About Disability Written By My Personal Hero<div class="MsoNormal" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0in 0in 0pt;">
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The word “disability” is a pretty effective one, as far as words go. It manages to convey both a technical definition (“lack of adequate power, strength, or physical or mental capacity; incapacity”) as well as a general sense of the lack of glamour or romanticism found in the world of disabilities. Additionally, and perhaps more to the point, it is a buzzkill. Frequently a conversation-stopper. Experience has often led me to wax philosophical about the reasons behind this sort of discomfort; for example, perhaps it is the fact that we tell children not to stare or ask questions that gives them a poor foundation for later on as “don’t stare” becomes “don’t look” which becomes “don’t see.” Maybe it’s because we as a society are preoccupied by both body image and quick fixes and disabilities are an affront to both. Or perhaps most likely of all it is because disabilities present a minority status that is more objectively negative than others – it is in many ways both an identity and a regrettable situation that people cannot be sure how to react to. Regardless of any or all of the reasons, it is an aspect of myself which I have frequently wanted to leave behind and dissociate from, but it’s still a constant and undeniable shaper of my life, relationships, and outlook. For better or worse, it’s with me all the time.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjT6HMU-9MO41TxJSDQIdFV_cgV9kwvYHC867dise34pikn2mpOOUKeAeVmNBOrCMF98Zuzko-4BcbtnIZpboNIvAIXrd_PKQ-aSlgdpV6opJxn0zZiB5WIVXj1bbEtaw1ke8gHWTcA1j/s1600/mary.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjT6HMU-9MO41TxJSDQIdFV_cgV9kwvYHC867dise34pikn2mpOOUKeAeVmNBOrCMF98Zuzko-4BcbtnIZpboNIvAIXrd_PKQ-aSlgdpV6opJxn0zZiB5WIVXj1bbEtaw1ke8gHWTcA1j/s320/mary.jpg" width="240" /></a><span class="Apple-tab-span" style="white-space: pre;"><span class="Apple-style-span" style="font-size: small;"> </span></span><span class="Apple-style-span" style="font-size: small;">Maybe it would be best to start by describing exactly how it affects me physically. I have nemaline myopathy, a form of muscular dystrophy (which is actually a group of diseases, not a disease itself). It is a rare genetic disorder that affects the shape and distribution of protein in my muscle cells, making it more difficult for them to develop and grow. This results in significant weakness in my skeletal muscles: legs, arms, face, trunk and lungs, but not in smooth muscles such as in my eyes, heart and internal organs. Although in one sense the disorder has only one effect (muscle weakness), this in turn creates many others such as skeletal deformations like scoliosis, some looseness in my joints, difficulty in doing things such as walking, breathing and enunciating, decreased ability to fight off diseases, and difficulty putting on and maintaining weight. This last one might seem like a bonus to anybody who’s seen ten minutes of commercials in the last twenty years, but in this case I don’t think you could argue that I really got lucky. I have the same difficulty gaining weight that others have in losing it, and I think it probably invites similar insecurities, comments, and obsessions with calorie-content. The slowness with which I have to eat plus the intense effort it takes to move around means that I burn up calories much faster than I can replace them. Additionally my low muscle tone extenuates my thin appearance. </span></div>
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<span class="Apple-tab-span" style="white-space: pre;"><span class="Apple-style-span" style="font-size: small;"> </span></span><span class="Apple-style-span" style="font-size: small;">Although it was apparently clear that there was something different about me when I was born, I wasn’t diagnosed until I was about eighteen months old. This was because nemaline myopathy is rare enough that it’s not on the standard gamut of tests. I sometimes wonder if finally figuring out what the deal was wasn’t just a little bit anticlimactic in some ways because once you know what it is, there isn’t much you can do about it. There’s no treatment or medicine or anything for it, just eating right (as well as often), exercising and trying not to get sick… probably the least exciting or original medical advice ever given. Still my mom (always my most active caretaker and advocate) took all the precautions she could think of, including signing me up for physical, occupational and speech therapies and biannual specialist doctor’s appointments just to keep an eye on things. </span></div>
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<span class="Apple-style-span" style="font-size: small;">As I got to be old enough to go to school, she had some more tough choices to make. She had to consider things like the stairs in my school and on the bus, the physical roughness, social insensitivity, and potential germy sickness of the other kids, the danger of the playground and gym class, the weight of doors, backpacks, and books, as well as the length of the school day and the understanding of teachers and strangers. I tell you all this to make it clear why she chose to have me attend school with a full-time one-on-one aide. This is a necessary explanation because for quite a while I was unwilling to make the concession that it was an indicated need, at least to start with. Not that I can truthfully say having an aide really bothered me at first. As a five-year-old I knew there was something different about me compared to other kids, but I didn’t think about it much more than that. I think one of the most interesting things about children in general is their acceptance of whatever their experience is as the definition of normal. I mean on some level I knew that other kids could do things I couldn’t and I could see that they didn’t have aides or anything, but I accepted that without too much question. It was what it was. </span></div>
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<span class="Apple-style-span" style="font-size: small;">But despite this, the feelings of being smothered, separated and uncomfortable because of the presence of the aide grew over the years and especially once I left elementary school for intermediary school (in my district this was grades 4-6). Maybe I should explain that a one-on-one aide is an adult hired by the school district to accompany the student </span><i><span class="Apple-style-span" style="font-size: small;">everywhere</span></i><span class="Apple-style-span" style="font-size: small;"> on </span><i><span class="Apple-style-span" style="font-size: small;">every</span></i><span class="Apple-style-span" style="font-size: small;"> school day. It gets old. This was true even when I had a good relationship with my aide, which I frequently did – I had the same aide from third to eighth grade; we became very close and still get together over breaks. I was always pretty clear that it was the general fact of the aide, and not the individual person, that drove me nuts. What an aide does depends on what the student needs, and in many ways, I didn’t need much. I never needed extra help with school work and have always had an aversion to situations in which I might get pummeled, such as crowds and dodge ball games. But the presence of an aide often made people think I needed more help than I did, like when some teachers assumed the aide helped me with my tests and homework.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4aQSw6_IiZvinFnIh-SeboT_1VkTh6zYprbtpTHKxOeKHv3_JfVqS5OY4nk_j2sKwRX1zcsYQQ50xSvKMt9dXfGsksxmdAthQ9DClhAq11G7RfF0t1hp8S8o5h9I10byvoboI_OeDRR4_/s1600/27193_1426418662712_1300149677_1169999_3729869_n-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4aQSw6_IiZvinFnIh-SeboT_1VkTh6zYprbtpTHKxOeKHv3_JfVqS5OY4nk_j2sKwRX1zcsYQQ50xSvKMt9dXfGsksxmdAthQ9DClhAq11G7RfF0t1hp8S8o5h9I10byvoboI_OeDRR4_/s200/27193_1426418662712_1300149677_1169999_3729869_n-1.jpg" width="200" /></a><span class="Apple-style-span" style="font-size: small;">As I got older and developed more of a social consciousness, I began to notice that other people, teachers and students alike, behaved differently around my aide. The aides were, after all, adults and therefore authorities. People would address questions and statements regarding me to my aide in front of me. Not “what’s your name?” but “what’s her name?” Substitute aides were the worst. For “confidentiality reasons” which I still don’t understand, the school district could or would not give substitute aides any information about me besides my name. They understandably had no idea what sort of disability I had and many assumed an intellectual or developmental one. When I was in middle school one who had made this mistake introduced herself by saying sweetly, with her hand comfortingly on my shoulder, “My name is Mrs. Feely, can you say ‘Mrs. Feely’?” We did not become friends. Others who better understood the situation were still worried about leaving me alone for any amount of time, including when either of us had to use the bathroom, because they were afraid that if something happened to me in that time they would lose their job or incur a lawsuit. This sort of thing, combined with teachers thinking I got help with my work, was the most frustrating thing of all for me. The best way I can think of to describe it was that I felt like it negated me in some way. I felt like I did not get credit for the things I could do, like my school work, handling a trip to the bathroom or five minutes alone, so sometimes I felt like less of a person.</span></div>
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<span class="Apple-style-span" style="font-size: small;">But these were just the worst days and many positive things did come out of my years with aides. For example, I learned to view the small society of school in a critical way. By this I don’t mean judgmental, although I’m sure that was sometimes the case, but rather questioning: What did people think of me? What made them think they knew anything about me? Were they right? Did I do the same thing to them? I couldn’t articulate all of these questions or their answers but they were the sort of considerations that came to build some of my world view. Looking back, it’s really not surprising that I became an anthropology major. Being somewhat socially separated from others but very interested in them enabled me to see both them and myself in a different way. I realized that if I assumed that people were judging me, I was actually judging them. I needed to cut people some slack and allow for the standard awkwardness and life complications experienced by everybody. </span></div>
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<span class="Apple-style-span" style="font-size: small;">I finally won my campaign to lose the aide in tenth grade, so my last two years of high school were a solo event. At first it was surprisingly nerve-wracking. I was jittery that first day of eleventh grade, the same way that I feel before a plane takes off: in theory I know that everything is fine and this is where I want to be but I can’t shake the feeling that this couldn’t possibly work. But it didn’t take me long to embrace my freedom. I was thrilled to have to ask for help when I needed it, instead of always having it there when I didn’t want it. I’m really glad I had these two years of independence, especially because I think otherwise the first day of college would have been literally overwhelming. Now I’m able to really appreciate my freedom without being too freaked out by it.</span><br />
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<span class="Apple-style-span" style="font-size: small;">As much as I learned about the general concepts of identity and human interaction and the specifics of disability through my school experiences, I think I would still be lacking had I not attended summer camp. From the ages of seven to seventeen I went to the Muscular Dystrophy Association (MDA) Summer Camp for a week out of every summer. Unlike the aide situation, which I was initially accepting of and grew to resent, I intensely did </span><i><span class="Apple-style-span" style="font-size: small;">not </span></i><span class="Apple-style-span" style="font-size: small;">want to go to MDA camp at first. I wanted to go to Girl Scout camp like my big sisters, even though I never especially liked being a Girl Scout. That wasn’t really the point. The point was I didn’t want to go to cripple camp where you sit around and talk about cripple things all day, I wanted to go to big girl camp where you… I was never really clear what you did there. All I knew was it was probably way cooler than MDA camp. I just couldn’t believe that something could be both fun </span><i><span class="Apple-style-span" style="font-size: small;">and</span></i><span class="Apple-style-span" style="font-size: small;"> disability-related. Fortunately I lost that argument (which I know is hard to believe with my intractable logic). </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span class="Apple-style-span" style="font-size: xx-small;">Me & Mary getting</span></b><br />
<b><span class="Apple-style-span" style="font-size: xx-small;">ready to zip line!</span></b><br />
<b><span class="Apple-style-span" style="font-size: xx-small;">MDA camp, 2008</span></b></td></tr>
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<span class="Apple-style-span" style="font-size: small;">What I found there, the first year and every year after, was a broad range of people that I would otherwise never have had the privilege to meet. I found people who handled their disabilities with such grace that you could never say they were impaired. This was the case with my friend Maya who was a counselor at camp and now one of my best friends. She does not have MD but rather a rare form of arthritis that frequently causes her intense pain as well as a host of other complications. Even so she meets every day and every person with liveliness and warmth, not just in spite of her pain, but even </span><i><span class="Apple-style-span" style="font-size: small;">because</span></i><span class="Apple-style-span" style="font-size: small;"> of it. I don’t think most people would blame her if she were bitter and resentful, but she holds herself to a higher standard and instead finds in her pain a source of compassion for other people. She literally inspires me to try to be a better person. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><b><span class="Apple-style-span" style="font-size: xx-small;">Me & Mary at <br />MDA camp, 2003</span></b><br /></td></tr>
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<span class="Apple-style-span" style="font-size: small;">Meeting people such as Maya has also helped me keep my own problems in perspective. I met people with other forms of MD who could not walk, feed themselves, breathe independently or move their arms. Every year, MDA camp offered me a whole new context through which to view my situation. Instead of the deficit model I often encountered at school, where the focus was frequently on what I could </span><i><span class="Apple-style-span" style="font-size: small;">not</span></i><span class="Apple-style-span" style="font-size: small;"> do, camp was a different playing field altogether. Since everybody there had disabilities, it was like they canceled out and we could all just be people. I realized that I was not a victim, and in some ways neither were people with more severe disabilities. Especially not when they have such strong minds, hearts, and personalities. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiirmEAK3c_11pHi9tUs9qM9Qn_cpcKX626SRfBXR4qZq2Jr5bmSf5AMLXk0y6DZgt1S1V67Dvse2WDr1DQbdzF6GY5Js-rRhsg-7D4-1VfzCVqgAch2WwZzlTqT4Zh6VoJVxwPRF59OIvn/s1600/n97500631_30233251_4397.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiirmEAK3c_11pHi9tUs9qM9Qn_cpcKX626SRfBXR4qZq2Jr5bmSf5AMLXk0y6DZgt1S1V67Dvse2WDr1DQbdzF6GY5Js-rRhsg-7D4-1VfzCVqgAch2WwZzlTqT4Zh6VoJVxwPRF59OIvn/s200/n97500631_30233251_4397.jpg" width="200" /></a><span class="Apple-style-span" style="font-size: small;">On the flip side, I also met people who I did </span><i><span class="Apple-style-span" style="font-size: small;">not</span></i><span class="Apple-style-span" style="font-size: small;"> think handled their disabilities as well. There were some who used it as an excuse not to engage in life, limiting themselves more than anybody else could have. Some seemed to consistently view all their problems as stemming from their disability, and to firmly believe that if only they could walk, or walk faster, everything would be better and they would be happier and more complete people. Yet how often do we meet people who are unhappy, dissatisfied or frustrated, even with their own bodies, despite their miraculous ability to walk? Clearly this, or any other “quick or easy” fix, is not the answer. I came to realize there are not so much disability problems and able-bodied problems, just human problems, experienced in different conditions and to different degrees by everybody. In other words, there really isn’t much difference between me lamenting my inability to jump or a friend lamenting her inability to look like Catherine Zeta Jones. Both are virtually unattainable and, even if attained, largely unhelpful. </span></div>
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<span class="Apple-style-span" style="font-size: small;">It’s impossible to know how my life would be different had I been born in a different body, but I think that being in this one has enabled me to meet people and learn things I might not otherwise have encountered. Although it’s easy to say this, and difficult to live it and appreciate it every day, I know that I have plenty to be grateful for. But this is not a Lifetime movie. Having a disability is not like overcoming an obstacle and moving on, it’s something that must be met and dealt with everyday. Yet even so, I think the experiences I’ve had and the people I’ve met have made it possible for me to make some progress in how I deal with it. It is a part of me but not the sum total and focus of my life.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMiaO5dAsxMGvisg4HGlr4r-Cev-ka24hRZeOETjdCU0fUQXtc04t7ZV5ps5X9Ipndo-h6W2r9xhOKPw7mA1d613_vazTdRRit6oBxrRjfT70STEpIuYT5pkU7YGROHBUOZ9634l_6RRs7/s1600/images-3.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="54" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMiaO5dAsxMGvisg4HGlr4r-Cev-ka24hRZeOETjdCU0fUQXtc04t7ZV5ps5X9Ipndo-h6W2r9xhOKPw7mA1d613_vazTdRRit6oBxrRjfT70STEpIuYT5pkU7YGROHBUOZ9634l_6RRs7/s640/images-3.jpeg" width="640" /></a><span class="Apple-style-span" style="font-size: small;">Is it clear yet why Mary is my hero? If not, you can take a look at <a href="http://lovingwithchronicillness.blogspot.com/2010/05/miss-mary.html">her spotlight </a>from last year...</span><br />
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<span class="Apple-style-span" style="font-size: small;">Love,</span><br />
<span class="Apple-style-span" style="font-size: small;">Maya</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMiaO5dAsxMGvisg4HGlr4r-Cev-ka24hRZeOETjdCU0fUQXtc04t7ZV5ps5X9Ipndo-h6W2r9xhOKPw7mA1d613_vazTdRRit6oBxrRjfT70STEpIuYT5pkU7YGROHBUOZ9634l_6RRs7/s1600/images-3.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-77258100261049344242011-11-09T23:00:00.001-05:002011-11-09T23:01:30.933-05:00Yes, I'm Still Alive (And Loving My Internship)<br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">To my wonderful readers,</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">Yes, I'm still alive! </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I apologize for my absence, but my final year of graduate school has </span><i><span class="Apple-style-span" style="font-size: small;">really</span></i><span class="Apple-style-span" style="font-size: small;"> taken off and free time is a thing of the past. Not only am I taking intense classes, but I'm also working in a field placement at Family Services of Westchester (FSW),</span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"> a large mental health organization. FSW runs 55 programs and serves about 30,000 individuals annually (including children, teenagers, adults, couples, and families) throughout Westchester county. </span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Times;"><span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I can honestly say I'm loving this internship! </span></span></span></span><span class="Apple-style-span" style="font-family: Times;"><span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">Everyone has been so wonderful and welcoming, especially my supervisor.</span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"> </span></span></span></span><span class="Apple-style-span" style="font-size: small;">I've been working at "Head Start", a federal program designed to give children (ages 3-5) from low-income families a positive beginning to their education. More than that, we aim to impact every aspect of a child's life, providing mental health services, nutritional counseling, parenting skills classes, etc. At Head Start, parents are treated as partners in their child's education and are included every step of the way. </span></span></div>
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<span class="Apple-style-span" style="border-collapse: collapse; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I spend the majority of my time split between various Head Start classrooms. I consult</span></span><span class="Apple-style-span" style="border-collapse: collapse; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"> with teachers and families about specific students who might be exhibiting problem behaviors (aggression, constant tearfulness, isolation, etc). </span></span><span class="Apple-style-span" style="border-collapse: collapse; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I've already had the unique opportunity to utilize play therapy, art therapy, and movement therapy with many of these children. It has given me incredible insight into their little worlds. </span></span></div>
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<span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I'm now also working as a clinical therapist in one of FSW's outpatient mental health clinics.</span></span><span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"> I've been assigned my own cases, and it's incredibly exciting! Naturally I question my skills and wonder if I'll make a difference, but everyone does (even professionals who have been in the field for decades). It's amazing to finally use what I've been learning these past several years to help people. I guess I'm really becoming a social worker, huh? </span></span></span></span></div>
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<span style="border-collapse: collapse;"><span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">Love,</span></span></span></span></div>
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<span style="border-collapse: collapse;"><span style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">Maya</span></span></span></span></div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-87292527205570265872011-11-04T15:27:00.003-04:002012-01-15T12:21:12.948-05:00A Candid & Moving Guest Post: Caring For A Loved One With Chronic Illness<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdXeYQZOLwj84s-taWBGhPzJBWP3TIuNR4SqOz7Ugfu8_yeZKkMor729-hSH3ph8zJGkb_7a6c9GFgzO4IBx9ulfN2tDBFhGgt5loNc_ziq2wWAZgoSN0YIkd7UTdNTxyCKFhaJ6fsUS8X/s1600/header660.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" height="145" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdXeYQZOLwj84s-taWBGhPzJBWP3TIuNR4SqOz7Ugfu8_yeZKkMor729-hSH3ph8zJGkb_7a6c9GFgzO4IBx9ulfN2tDBFhGgt5loNc_ziq2wWAZgoSN0YIkd7UTdNTxyCKFhaJ6fsUS8X/s320/header660.png" width="320" /></span></span></a></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-weight: normal;">Maya has asked me to write this post based on my experience caring for my husband Bernie who passed away at age 58 in February, 2007. Bernie was diagnosed with</span></span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><a href="http://www.mult-sclerosis.org/secondaryprogressivemultiplesclerosis.html"><span style="text-decoration: underline;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">secondary progressive multiple sclerosis</span></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">in 1999. Multiple sclerosis (MS) is a progressive disease of the central nervous system that is sometimes called “the mystery disease” because there is no known cause. It is not even known if MS is one disease or several different diseases, but it is classified as an autoimmune disease. What is known is that the myelin sheath that surrounds the nerves is damaged. As the disease progresses, so does disability.</span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Although I suspected something was wrong at least a year before Bernie decided to seek medical attention, he was in denial of many of the symptoms which were already apparent to me. The most obvious symptom was his frequent loss of balance that he would attribute to a “bum knee”.</span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When a family member is living with a chronic illness it impacts everyone in the family. This impact can be minimal or severe and everything in between. It can be emotional, financial, social and physical. These factors are different for every family member. For me the most difficult thing was watching this disease take everything from my husband. It totally stripped him of all quality of life and, at the end, he could not even voluntarily move a muscle below the neck. It was an eight year spiral toward total disability and death; it was very hard to watch.</span></span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Shortly after Bernie was diagnosed, I joined a group for family members of newly diagnosed patients run by the </span></span><a href="http://www.nationalmssociety.org/index.aspx"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">National MS Society.</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> I suggested to Bernie that he join a group for newly diagnosed patients, but he refused. He felt that “groups or therapy” were not for him. I didn't push this because he was not someone who could be convinced to do something he didn't want to do. Interestingly, when I came home after the first meeting he wanted to know what I talked about. I told him it was all about me and that if he had any curiosity about what a support group does he should try one. He never brought it up again. A few months later I joined another support group run by the MS Society which I am still involved with. This group, as well as my daughters and close friends, helped me through very trying times. Without these supports I’m not sure I would have come through so well. Honestly, although support from family and friends is profoundly important, I still felt that no one outside of the support group truly comprehended the stresses in my life. I often say “my support group saved my life.” </span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Depression, sadness, and anxiety also impacted my life. I didn't realize it until I was watching TV one evening. I knew it was something I would have normally found hilarious, but I didn't laugh, chuckle or even smile. The next day I called my doctor, made an appointment, and immediately started taking an antidepressant. A month later I definitely started feeling like myself again. Just like the commercial, I felt as if the dark cloud that was hanging over my head moved away. There were still times that it was just so heartbreaking and overwhelming that I would have a good cry. However, I didn’t have that constant lump in my throat and after I let it out I would feel better. </span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When Bernie was healthy he could be an angry person. After he became ill I told him that if he was angry he would have to find some way to cope other than taking it out on me or I would leave him. It was that simple for me. I told him I had every intention of sticking with him no matter how bad things got because I loved him. I told him he had the right to be angry, anxious, scared and frustrated. However, I wouldn't tolerate constant, consistent anger or emotional abuse. Sometimes he would be nasty and when I had enough I just had to give him a look or a sharp comment about his behavior and I would walk away. Shortly afterwards I would get an apology and it would be over. People would ask me “aren’t you angry about this disease or what is happening?” My answer was always “no”. I had tremendous sadness, but it did not make me angry. I did get angry at people who treated Bernie badly and, unfortunately, that did happen. </span></span></span><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The social impact of chronic illness can be devastating for the patient as well as their family members. Bernie had to retire in 2002. As his disease progressed, he began to cut himself off from the outside world. As it became more difficult for him to walk, he was increasingly reluctant to leave the house. He fought using a cane, then the walker, and finally a wheelchair. I understood how hard this was for him, but it was also difficult for me. When I had to get him somewhere and he wouldn’t use a wheelchair he would lean on me (he was 6’2” and I’m 5”5”). When we went out to dinner with friends we always tried to go early before it got crowded and tried to get a table close to the entrance. One evening we went out to a restaurant and he had trouble walking out. When we got home he told me he was “done”; that he would no longer go out anywhere - not to dinner, not to a movie, not to visit friends...nowhere. I was stunned. I was also angry and informed him that I was not going to stop having a social life because he had made this decision. </span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It was as if I had to lives - my life at home with Bernie and my other life without him. I began going out without him, but still invited friends to our home. I would make dinner until he had difficulty using eating utensils. Then he refused to eat with anyone other than with me or our daughters. He withdrew even more and would just sit in front of the TV from the time he woke up until he went to sleep. Bernie was a brilliant man who used to read the New York Times everyday and did the crossword puzzle in 10 minutes. He had no cognitive problems, but as I said earlier, he did suffer from severe depression.</span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We were fortunate that Bernie’s disease did not have a huge financial impact on us. We had excellent health coverage, good jobs, and good pensions. We had always lived within our means and therefore had no debt. However, people who are not as fortunate as we were can be devastated by the financial impact of illness. I don’t know what we would have done if he had not been able to retire with a pension and social security disability. When it became too hard for me to work and care for him I was also able to retire with a pension and retain our health insurance. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I've been asked many times where I get my strength and I honestly don’t know. It isn't from religion or faith, because I am not a believer. It may be from my upbringing. My parents and grandparents were all incredibly strong people. My mother became disabled after suffering a cerebral aneurysm at age 48. My father cared for her with love until she passed away at age 65. I was very close to my dad; he was the best man I ever knew and a wonderful role model. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When Bernie became totally dependent on me for everything it did change our relationship. In some ways it actually improved our relationship because we both realized we had to be more sensitive to each other. We did talk about this, and when either of us became frustrated, we learned to take a step back, take a deep breath and discus the issue before lashing out. It wasn’t perfect, we both had our moments, but it worked. We had dinner together almost every night, continued to enjoy each others company and were able to make each other laugh right up until the end. Even though Bernie’s illness was very hard on me, I can look back on it now with no guilt and no regrets. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Maya asked if there was one message I could send to all the medical professionals in the world, what would it be? Please listen to you patients and their loved ones. Don’t dismiss their needs especially when it is about their quality of life or physical pain.</span></span></span><br />
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Written by</span></span></b><br />
<span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sue Diamond</span></span></b></span><br />
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<span style="letter-spacing: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj46GVNtGRUx-oRyI_stn-mgSD476S1waMgaFcIMUPmnkTL3VYkN9ffOXhTN8oQwrJwNaIrZGPalgbgb8FL6Lc0uLHaprcJ8xgp8bolddVxcfKbSVWwQ44YLSGgVMyDJO74aHM4oPM6oBy0/s1600/divider4.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" height="44" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj46GVNtGRUx-oRyI_stn-mgSD476S1waMgaFcIMUPmnkTL3VYkN9ffOXhTN8oQwrJwNaIrZGPalgbgb8FL6Lc0uLHaprcJ8xgp8bolddVxcfKbSVWwQ44YLSGgVMyDJO74aHM4oPM6oBy0/s640/divider4.png" width="640" /></span></span></a></span><br />
<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span><br />
<span class="Apple-style-span" style="color: #6aa84f;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I'm proud to say that Sue Diamond is part of my family and one of the strongest women I know. </span></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sue, thank you for opening your heart to us and for having the courage to tell your story. Bernie was so lucky to have you.</span></span></i></span><br />
<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="color: #6aa84f;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></span><br />
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="color: #6aa84f;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">All my love,</span></span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="color: #6aa84f;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Maya</span></span></span></span></div>
</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com0tag:blogger.com,1999:blog-6190258529969238606.post-9421600617460307632011-10-30T16:24:00.000-04:002011-10-30T19:20:36.301-04:00What Fibromyalgia Feels Like & Relief At Last!!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwl-CmsTuW13DRowjdYWM_k64ytBMDH09S2Ngg_KKOw4x5rUVF5Cd2LEGLm57lK50ZjTd-Wl4nbQnilwbDmh-1jWgbPD3PeCkD_YEDeU_OMYumhsptEQZgG_e_TiwYxL5COv81vscTED9l/s1600/dividers.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a>After officially being diagnosed with Fibromyalgia this past April, I wrote a post entitled "<a href="http://lovingwithchronicillness.blogspot.com/2011/04/medical-game-plan.html">A Medical Game Plan</a>.<span class="Apple-style-span" style="font-family: inherit;">"While it wasn't easy to accept a second diagnosis, it provided some clarity and relief.</span></div>
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<span class="Apple-style-span" style="font-family: inherit;">I've had joint pain my entire life, but the pain associated with Fibromyalgia is entirely different. It has two components: a deep, widespread burning and a kind of skin sensitivity that can make even the lightest touch painful. Of the 18 "tender points" associated with Fibromyalgia, I have 16, and even pushing lightly on or near them can bring me to tears. This condition alters the way your mind processes pain; essentially my nervous system is in "over drive." For instance, a warm bowl of oatmeal might feel scalding in my hands, and a simple blood test can now make me jump out of my chair. Although I rarely exercise, it commonly feels like I've run a marathon; my muscles are knotted and achy as if I have the flu.</span><br />
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<span class="Apple-style-span" style="font-family: inherit;">I also noticed significant cognitive changes. My mind was "fuzzy", and my memory had never been so bad. After researching and comparing notes with other patients, I now recognize this as</span> "<a href="http://www.health.com/health/condition-article/0,,20326433,00.html">Fibro fog</a>" <span class="Apple-style-span" style="font-family: inherit;">- a phenomenon that is extremely real and profoundly disorienting. Finally, the quality of my sleep has been affected and my fatigue is overwhelming. Even on nights with 9 + hours of sleep, I can wake up feeling as if I never went to bed. </span></div>
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<span class="Apple-style-span" style="font-size: large;"><b>I'm thrilled to report this is all changing! </b></span></div>
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Last spring Dr. Berman suggested replacing my anti-depressant (<a href="http://www.drugs.com/zoloft.html">Zoloft</a>) <span class="Apple-style-span" style="font-family: inherit;">with a new drug called</span> <a href="http://www.savella.com/">Savella</a> <span class="Apple-style-span" style="font-family: inherit;">- a single pill proven to help both depression and Fibromyalgia pain. It sounded ideal, but I was careful not to get my hopes too high. I'm extremely sensitive to medication and, because of my history of medication-induced depression, Dr. Berman felt I should be monitored by a psychiatrist as I made the switch. It took months to find a psychiatrist who took my insurance, but</span> <a href="http://www.zocdoc.com/doctor/dana-blair-devito-md-16254#">Dr. Dana DeVito, MD</a> <span class="Apple-style-span" style="font-family: inherit;">was certainly worth the wait. Not only does she have experience treating patients with chronic pain, but her empathy is tremendous. It's not easy to sit down with a perfect stranger and discuss your health history, but she made it easy. After I mentioned my history with depression, she validated me with just one sentence: "Honestly Maya, I'd be worried if you </span><i><b><span class="Apple-style-span" style="font-family: inherit;">didn't</span></b></i><span class="Apple-style-span" style="font-family: inherit;"> feel depressed at some point." It was a simple concept, but it went a very long way. </span><br />
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<span class="Apple-style-span" style="font-family: inherit;">The day after I started Savella, I already noticed an improvement in my pain. As my body transitioned from Zoloft (a medication I had been taking for over a year) to Savella, I experienced some unpleasant side effects. For the first few days, I was very dizzy in the mornings, my anxiety increased, my heart was racing, and I was sweating more than usual. Dr. DeVito explained this reaction was most likely a response to the </span><span class="Apple-style-span" style="line-height: 16px;"><em style="font-style: normal;"><span class="Apple-style-span" style="font-family: inherit;">norepinephrine in Savella - a stress hormone that can simulate the "fight or flight response." She reassured me that side effects typically subside after the body acclimates to a new medication, so I decided to push through these initial problems. It was one of the best decisions I've ever made.</span></em></span><br />
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<span class="Apple-style-span" style="font-family: inherit;">On a scale of 1-10, my pain level has ranged between "5-9" for well over a year. My fatigue has been overwhelming, and every movement had to be carefully measured in order to conserve my energy. In just three weeks, the searing pain I mentioned above has dropped to a "1" or a "2" at most. I was hesitant to let myself believe it at first, but as the days pass and my pain stays away, I'm letting my guard down. Truth be told, I'm fighting back happy tears as I write this post; words cannot describe how my life has changed and how my days have brightened. When I first open my eyes in the morning, I don't run to my bottle of painkillers, nor am I immediately reminded of my chronic pain. I'm able to make and keep plans, and I actually have the energy to enjoy then. I can sit and stand for longer periods without constant, throbbing back pain, and everyone says my face looks happier and healthier. Pain is no longer on the forefront of my thoughts and, as a result, my mind is so much clearer. I'm learning more, remembering more, and experiencing more than I have in years. More than anything, I truly feel like myself again. </span><br />
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com7tag:blogger.com,1999:blog-6190258529969238606.post-11600246106289213422011-10-26T23:00:00.000-04:002011-10-27T15:34:00.891-04:00IBD Icons: A New Awareness Campaign From American Idol Contestant Casey Abrams & The Crohn's & Colitis Foundation Of America (Voting Ends Soon!)<br />
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="color: #500050;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil_f3UD8lyPI8hRUqNxyewgB0GPdyPlFSgpVjK000kgSu34BpR5Pg8LjWR6VeD_EShwLyT6a1MU5XEf-02LHgmAfSdgY-CICqJTVVyq6qP6dUVczZCIQpkf4hTdYXykl_z_pmKvt-qB-7x/s1600/starswhite_000000_plain-yellow.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="113" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil_f3UD8lyPI8hRUqNxyewgB0GPdyPlFSgpVjK000kgSu34BpR5Pg8LjWR6VeD_EShwLyT6a1MU5XEf-02LHgmAfSdgY-CICqJTVVyq6qP6dUVczZCIQpkf4hTdYXykl_z_pmKvt-qB-7x/s640/starswhite_000000_plain-yellow.gif" width="640" /></a><span class="Apple-style-span" style="color: black;">Who loves</span> </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">American Idol?</span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP3uxt0S4o4Gqabq59DVYOS6l7XRTQWJWDIosTDceTbshRKzw7wuImeyNDKiT_ph8HZRmxR3PIveZRIgm-sZuZZzkvXZjmXRLk6Srt5-lZXwm6fOz0eAN4IOiJH4WHEK9pl50w-OI-Mnly/s1600/FOX_casey_abrams_american_idol.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><img border="0" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP3uxt0S4o4Gqabq59DVYOS6l7XRTQWJWDIosTDceTbshRKzw7wuImeyNDKiT_ph8HZRmxR3PIveZRIgm-sZuZZzkvXZjmXRLk6Srt5-lZXwm6fOz0eAN4IOiJH4WHEK9pl50w-OI-Mnly/s200/FOX_casey_abrams_american_idol.jpg" width="200" /></span></span></a><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">If you're a loyal fan, you probably know the name </span></span><a href="http://www.americanidol.com/contestants/season_10/casey_abrams/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Casey Abrams</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">. Casey was a Season 10 American Idol contestant and won the hearts of many across the country </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">with his smooth jazz vocals and skills on the bass.</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"> During the summer 2011 American Idol Tour, Casey began investing in a cause that is clo</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">se to his heart: a new awareness campaign and contest called </span></span><b><a href="https://www.ibdicons.com/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">IBD Icons</span></span></a></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"> for </span></span><a href="http://www.emedicinehealth.com/inflammatory_bowel_disease/article_em.htm"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">inflammatory bowel disease (IBD)</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">, which includes </span></span><a href="http://www.mayoclinic.com/health/crohns-disease/DS00104"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Crohn’s disease</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"> and </span></span><a href="http://www.mayoclinic.com/health/ulcerative-colitis/DS00598"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">ulcerative colitis (UC)</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">.</span></span></span><br />
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<span style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Despite his own diagnosis and struggle with UC, Casey finished in sixth place on season 10 of American Idol to earn a coveted spot on the 2011 summer tour.</span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhPznlNX_iHGhPnfntUQniwN2GoNTfaUGcwzIhKXg6aM6AAwMo3eOVFQYldOm-8-auAb_tPo8OYS4SnnhhOjbv9Cx8qjZzbo0VJeMAaVfk6aN5u6MtsAaxXgnGWUPoS8z7GVgcyJd8bmhQ/s1600/music-notes-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhPznlNX_iHGhPnfntUQniwN2GoNTfaUGcwzIhKXg6aM6AAwMo3eOVFQYldOm-8-auAb_tPo8OYS4SnnhhOjbv9Cx8qjZzbo0VJeMAaVfk6aN5u6MtsAaxXgnGWUPoS8z7GVgcyJd8bmhQ/s200/music-notes-1.jpg" width="200" /></span></span></a><span style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Casey has teamed up with the </span></span><a href="http://www.ccfa.org/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Crohn’s and Colitis Foundation of America (CCFA)</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"> </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">for IBD Icons to inspire people living with IBD to pursue their dreams. Through the campaign, IBD patient have had an opportunity to share their success stories for a chance to win the title of IBD Icon and a trip to see Casey perform at the Zappos.com Rock ‘n’ Roll Las Vegas Marathon & ½ Marathon to benefit the CCFA.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">The top nine finalists have been chosen, and the public can now<span class="Apple-style-span" style="font-size: large;"><a href="http://draft.blogger.com/goog_1541989858"> </a></span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><span class="Apple-style-span" style="font-size: large;"><a href="https://www.ibdicons.com/">vote</a></span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"> for the candidate they find most inspiring. Two winners - one with UC and one with Crohn's - will be voted the 2011 IBD Icons. For every vote cast, Janssen Biotech, Inc. will donate $1 to the CCFA for IBD research and education. I was lucky enough to interview one of these incredible finalists, and today you'll see her inspiring answers!</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"></span></span></span><span style="color: black; font-family: Georgia,"Times New Roman",serif; font-size: small;"><span>Katie
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disease. </span><span>Four </span><span>years later she was diagnosed </span><span>with Crohn’s disease, a diagnosis later changed to ulcerative colitis,</span><span> another form of IBD.</span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">When Katie received her diagnosis, she thought her life would be cut short. She attended college on a Navy ROTC scholarship and was not sure what affect her diagnosis would have on her plans to serve as an officer in the Navy. At the time, she even told her fiancé (now her husband) that he could break off the engagement, as she did not want him to experience the pain this disease inflicts upon family members. He refused to do so, and stuck by her as they weathered her illness, her medical disqualification from military service, a sea of medical bills, and countless insurance claims. Inevitably, they established news goals and a direction for their life together as husband and wife.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Katie found new hope and inspiration from her experience and decided to apply her skills and abilities in order to help others. She has since become an attorney.<u></u><u></u></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Katie misses her Dad every day. His absence is a continual reminder that she needs to do what she can, when she can. She says, “UC may be a part of who I am, but it does not completely define me…Live for now. Find joy in the beauty of everyday life. Enjoy the good times when they come in order to get through the bad times.” <u></u><u></u></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Katie signed up on the IBD Icons website to share her story of life with an IBD, and hopes that people vote for her to win and find inspiration from her story. And now, please enjoy this wonderful interview with Katie...<span class="Apple-style-span" style="border-collapse: separate;"></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMfuweqv4LRvi2cZ23mkBVzP55N0BxRhDZBpIv1dcAtp44Dh9BMYMRruoand6fH-yU2jK_LUfFwnkqvoRmmbmxTfUEa1EXdCEtpw0JstZ5rTYJctELuBDQt2hVqxIG1WN5AJ1kWC35pWkG/s1600/Katie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMfuweqv4LRvi2cZ23mkBVzP55N0BxRhDZBpIv1dcAtp44Dh9BMYMRruoand6fH-yU2jK_LUfFwnkqvoRmmbmxTfUEa1EXdCEtpw0JstZ5rTYJctELuBDQt2hVqxIG1WN5AJ1kWC35pWkG/s320/Katie.jpg" width="265" /></span></span></a><br />
<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><span class="Apple-style-span" style="color: black; font-weight: normal;"></span>When were you first diagnosed and how old were you ?</span></span></b><br />
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">I was first diagnosed in August 2002, just two weeks before my 22nd birthday. As fate would have it, this was my very first day of my senior year of college and was only days before the anniversary of my dad's death from Crohn's complications. I had started showing symptoms about a year and a half before my diagnosis, but kept being told that I didn't "look" sick and that I was too active and otherwise healthy to have IBD! </span></div>
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<b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?</span></b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><u></u><u></u></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">One of the biggest things is to find a doctor who will work with you with treatments and to manage symptoms. Not everyone's illness has the same set of symptoms. One of the hardest things for me has been to learn what my body's signals are so that I can adjust my routine to allow it to heal. That has taken time and I'm certainly still learning, even 9 years from my diagnosis. Having a chronic illness has changed my life and has caused me to adjust my goals somewhat, but there are still more things I can do than things I can't. It may mean being flexible about my goals, but I can still set goals and achieve them. Chronic illness has changed my life, but it hasn't kept me from living my life on my terms. I run half-marathons and am hoping to run a full marathon this spring. I also hiked my first "fourteener" this summer when my husband and I summited Quandary Peak, just outside of Breckenridge, Colorado. I think that's what prompted me the most to submit my story for consideration as an "</span><a href="http://www.ibdicons.com/" style="color: #215894;" target="_blank"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">IBD Icon</span></a><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">"--when I was diagnosed I felt like I'd been given a death sentence, given my dad's history. If I had seen these stories of successful people living with these illnesses, I think it would have given me tremendous hope during a dark period of my life. I wanted to be that hope for someone else and to raise money for research. Treatment has advanced so much since my dad was diagnosed 25+ years ago and I am certainly reaping the benefits of those advancements. It is exciting to think how much more treatment will advance in another 25 years with the proper funding.<u></u><u></u></span></div>
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<b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Please explain a bit how your condition affects you. </span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiifz8F-_2LNgsfTn28CPAFChxmE_oVolBdiC2eUwI1c1GqtgHOi7uhfDFehAHmBsuuTGSarjC0v-Xc7MXOVM3lG85YH6sbLGfgJtmTNJwicCdjTFpbLmndOkdPq6dlqOB63qjq7TlCRdW0/s1600/star-gifs-028.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiifz8F-_2LNgsfTn28CPAFChxmE_oVolBdiC2eUwI1c1GqtgHOi7uhfDFehAHmBsuuTGSarjC0v-Xc7MXOVM3lG85YH6sbLGfgJtmTNJwicCdjTFpbLmndOkdPq6dlqOB63qjq7TlCRdW0/s1600/star-gifs-028.gif" /></span></a><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">One thing I have learned over time is that stress is my biggest trigger. I'm a very competitive Type A attorney, so stress is a natural part of my life. In order to keep my disease under control, I have to control that stress. I discovered a few years back that I love running and that it really helps me relieve stress. Also, I need my sleep--I really prioritize 8 hours of sleep. Even so, sometimes the disease acts up. My major symptom is GI bleeding, which can lead to anemia. In the past, I've received blood transfusions because of loss of blood. The fatigue is really hard for me to deal with because it brings me to a complete stop. I've learned that when that happens, I just have to let go and rest so that I can fight another day. <u></u><u></u></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><br /></span><b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Where do you get your strength?</span></b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><u></u><u></u></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">My strength comes from so many sources. My family and friends are fantastic supporters. I'm married to a wonderful man who understands when I'm having a bad day. When I was diagnosed, I actually told him that he didn't have to marry me and was fully prepared for him take me up on the offer--I think I was actually surprised when he refused. Also, there are so many people I see living with chronic illness every day who get up and go about their days. They give me strength. I've had very dear friends undergo cancer treatments and then work to share their stories to help others. They are my heroes and I don't know that I would have shared my story without their example to follow. Overall, though, it's the little things in life that really keep me going--leaves changing color in the fall, beautiful sunsets, flowering meadows. The world keeps going and so can we.<u></u><u></u></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><br /></span><b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">What are you most proud of?</span></b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><u></u><u></u></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">Today. And tomorrow, when it comes. And then the next day. Just getting up, living life, and trying to make each day the best day possible, so that when the bad days come--because they will--there are all sorts of good memories to help with the bad days. None of us ever know what our future holds--all we know is now. I'm a planner by nature and I was probably the only kindergartner with five year plans. My family laughs that I create contingencies to my contingencies. Living with this disease has forced me to be much more flexible. I still make plenty of plans and I doubt that will ever change--but now I realize that it is OK to change those plans from time to time.</span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><br /></span><b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">What would winning the title of IBD Icon mean to you?</span></b><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><u></u><u></u></span></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">It means showing the world that living with this disease and accepting this disease does not mean being a coward; that this disease can be part of a full and wonderful life. For a long time, I hid my disease from everyone. If no one could tell I was sick, then I wasn't really that sick and there was no way my dad's history was going to be my destiny. Accepting this disease--and the uncertainty that comes with it--has really caused me to try to appreciate each day and strive for what I want out of life. I want to share that hope with others and raise some money so that we get closer to a cure so that no other families ever goes through what my family has experienced.</span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">For further information about the IBD campaign and the 9 finalists, visit this website -- </span><a href="http://www.multivu.com/players/English/51547-ibd-icons/" style="color: #2357c3;" target="_blank"><span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;">http://www.multivu.com/<wbr></wbr>players/English/51547-ibd-<wbr></wbr>icons/</span></a></div>
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<span class="Apple-style-span" style="font-family: arial,sans-serif; font-size: 13px;"><a href="http://www.multivu.com/players/English/51547-ibd-icons/" style="color: #2357c3;" target="_blank"></a></span><span class="Apple-style-span" style="font-family: arial,sans-serif; font-size: 13px;"></span></div>
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<span class="Apple-style-span" style="font-family: Georgia,'Times New Roman',serif;"><span class="Apple-style-span" style="color: #500050; font-family: arial,sans-serif; font-size: 13px;"></span></span></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com0tag:blogger.com,1999:blog-6190258529969238606.post-13295688812335592852011-10-25T08:19:00.000-04:002011-10-25T08:19:59.451-04:00Guest Post By Suzie Edward May: Renowned Author Of "Arthritis, Pregnancy And The Path To Parenthood"<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9AVZ1_iFZAUM65BGFdttMcAsCwrBCoAJW47siMEY0Wmhl_20df353GNHkVU-uG79tVOB57gmrsZ9Q-6J-CNjN4cQ7t0Qjbp3t643h90tLvP1M8nTuAbr3Cs1a_5n9gsRGYdlLcjm-M-6c/s1600/images-8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="88" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9AVZ1_iFZAUM65BGFdttMcAsCwrBCoAJW47siMEY0Wmhl_20df353GNHkVU-uG79tVOB57gmrsZ9Q-6J-CNjN4cQ7t0Qjbp3t643h90tLvP1M8nTuAbr3Cs1a_5n9gsRGYdlLcjm-M-6c/s400/images-8.jpeg" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg75VJssXzSLd-r4GbFa7-wKOYiD96nKWGbKmypf7wo68wlYfyfLIQvH0PjgHgOihc2HIdveJx_aryC17A_ZqBd4ttpXW7xK75ALT_EWOofHXeD1W8XmjY1yichAbwnTLE12OEhg5ksEHAQ/s1600/jpeg+suzie+cover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg75VJssXzSLd-r4GbFa7-wKOYiD96nKWGbKmypf7wo68wlYfyfLIQvH0PjgHgOihc2HIdveJx_aryC17A_ZqBd4ttpXW7xK75ALT_EWOofHXeD1W8XmjY1yichAbwnTLE12OEhg5ksEHAQ/s400/jpeg+suzie+cover.jpg" width="258" /></a></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">A few weeks ago I posted <a href="http://lovingwithchronicillness.blogspot.com/2011/10/q-with-jodi-mckee-pregnant-and.html">an interview</a> with my friend Jodi about being pregnant and chronically ill, and recently I shared my own poem entitled <a href="http://lovingwithchronicillness.blogspot.com/2011/10/considerations-for-my-unborn-child-poem.html">Considerations For My Unborn Child</a>. Today's guest post fits right in. Although it appears otherwise, I promise you I'm not baby-obsessed (just yet).</span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><i><b>Arthritis, pregnancy and the path to parenthood</b> was <span class="Apple-style-span" style="font-style: normal;">written by esteemed Australian author</span><b> </b></i></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;">Suzie Edward May. Suzie is a rheumatoid arthritis patient and a loving mother of two. As soon as I heard about this book, I wrote to Suzie asking if she'd be interested in guest posting. I was delighted when she took me up on the offer! I hope you enjoy her writing, and please don't hesitate to leave comments...</span></div>
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<span class="Apple-style-span" style="font-size: 11.6667px;"><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="color: #3d85c6;">My story</span></span></b></span></i></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I am 37 years old and live with my husband and two beautiful children Oscar (4 years) and Olive (19 months). We live in Perth, Western Australia. I am a lawyer, an author and an arthritis advocate. I was diagnosed with <a href="http://www.arthritis.org/rheumatoid-arthritis.php">rheumatoid arthritis</a> (RA) 9 years ago at age 28.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My pain started in my feet and within 3 months of diagnosis it moved to every joint in my body and remains there today. I have spent the last 9 years managing my illness with a cocktail of arthritis medications – methotrexate, plaquinel, cortisone, celebrex, humira, enbrel, remicade, simponi, cimzia – and by trying to find meaning in this path I have been presented with, through working to increase awareness of arthritis and its impact on individuals, families and communities.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When my husband and I decided to start a family, I searched worldwide for information to guide me through the process of having a baby while managing RA. To my astonishment I found nothing. The journey of coming off medication in order to safely conceive, carry my babies and nurse them was monumental for me. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It was one of the hardest challenges I would face in my life both physically and emotionally. It would test my inner strength and determination in ways I could not have imagined. It would be hard – and without any written resource to guide me or inspire me, it would seem at times, insurmountable. </span></span></div>
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<i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #3d85c6;"><b><span class="Apple-style-span" style="font-size: large;">Why did I write this book?</span></b></span></span></i></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">While achieving my goal of having my own children, I became fiercely determined to fill this gap in arthritis information. I wanted to provide other women, their partners and support networks, with a resource that would alleviate some of the isolation and loneliness that I felt on my own path to parenthood.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkvJnLOqez4VzkAkCfOaZe5a-FDegQxTDthtmHtAKa9U8uEgm8gzElQraiCVdzmSR-H8heOInZTAhJlR4SH133pDKQ288g4QfOF0757S0YrVjE-PV_wtu6LiVXCoqkqn3X75O-Xq7Zi18/s1600/B%2526W+Promo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkvJnLOqez4VzkAkCfOaZe5a-FDegQxTDthtmHtAKa9U8uEgm8gzElQraiCVdzmSR-H8heOInZTAhJlR4SH133pDKQ288g4QfOF0757S0YrVjE-PV_wtu6LiVXCoqkqn3X75O-Xq7Zi18/s320/B%2526W+Promo.jpg" style="cursor: move;" width="214" /></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I searched the globe for women who had been through this journey before me. I wanted to connect with them, understand them and learn from their experiences. What I found were women who felt exactly like me – who were scared, isolated and uncertain of whether they were going be able to be a mother. I found women who had courageously achieved what I was striving for. I found women who inspired me and who opened their heart to me, allowing me to share in their path to parenthood so I could share it with others alongside my own journey.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I started writing </span></span><b><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Arthritis, pregnancy and the path to parenthood</span></span></i></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> when pregnant with my son, and the book went to print the day my daughter was born 4 years later. I felt like I had given birth to twins that day!</span></span></div>
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<i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #3d85c6;"><b><span class="Apple-style-span" style="font-size: large;">What is the book about?</span></b></span></span></i></div>
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<b><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Arthritis, pregnancy and the path to parenthood </span></span></i></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">is the first book its kind worldwide. There are no other publications that discuss pre-conception, pregnancy, parenting to 12 months and arthritis. This book is not only unique; it is an essential resource for anyone with arthritis contemplating a family; and it fills a significant gap in arthritis information.</span></span></div>
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<b><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The book covers the following</span></span></i></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">: to parent or not to parent, reducing or ceasing medication, pregnancy, the post-birth flare, breastfeeding (nursing) or bottle feeding your baby, caring for you and your relationships with others, caring for your baby in the first 12 months, and preparing to do it all again.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">While it makes me very proud to see my book published and on bookshelves all over the world; knowing that I have touched the lives of others in a positive way is the most fulfilling aspect of this process for me. Every week I receive heartfelt emails from women and men who have read my book. Whether from the United States, the United Kingdom, Canada, New Zealand or Australia, every one of them tells me that my book has had an inspiring, emotional, positive impact on their life. Some women say </span></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">“I feel like you have crawled inside my head and written down my thoughts”</span></span></i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> while others share a deep appreciation that they were able to share the book with their loved ones, who could finally understand what they have been going through. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It is these women (and men) that I am the most grateful to. Every one of them inspires me and reinforces that I did the right thing by writing and publishing this book. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I believe that information is power; and with an illness like arthritis (and many other chronic conditions), power is something we often feel has been taken away. I live with this sense of powerlessness everyday as I know I am slave to a cruel and debilitating disease that is unpredictable, incredibly painful and has no cure. Educating myself about arthritis and about how I can live my life despite arthritis, gives me back some of my power. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I always believed I would become a mother – it was never something I questioned. So, when diagnosed with RA and asked </span></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">“... you don’t want to have children do you?”</span></span></i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> I was determined to never let RA become a barrier to me achieving that which I hold so dear in my heart. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">This journey was hard for me. For other women it will be easier, for some it will be more difficult or even unattainable. But knowing there are other women out there who have been through the hard times and succeeded, motivated me to never give up. Connecting with other women with arthritis, learning of their experiences and sharing our joys and sorrows, gives me back my power to fight. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My children are my life. They get me up every morning when my body screams for me to stay in bed. They teach me every day the meaning of unconditional love, purity and living in the moment. I would go through all the RA pain I have endured and more, just to hold them and care for them. It </span></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">is</span></span></i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> possible to have beautiful, healthy children while also managing a chronic illness. The road may be tough at times, but with the support of others and your inner strength, you can achieve anything you desire. </span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><b>Suzie Edward May</b></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You may visit Suzie’s website to order your copy of her book (payment via Paypal) - </span></span><span style="color: blue; text-decoration: underline;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">www.suzieedwardmay.com</span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You may also contact Suzie by email at </span></span><span style="color: blue; text-decoration: underline;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">suzie@suzieedwardmay.com</span></span></span></div>
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</span>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-78937186536566299622011-10-14T09:00:00.000-04:002011-10-14T21:38:27.484-04:00Taking The Long Way Home (Summer Snapshots)<div class="separator" style="clear: both; text-align: center;">
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About a month ago, I took a little end-of-summer trip with Vicki and Palmer, two of the best friends I could ever ask for. We headed out to the eastern end of Long Island for a weekend full of long talks, big laughs, delicious seafood, beautiful beaches, and of course ice cream. Since we live several states apart, it's rare that the three of us are together at the same time. I made sure to savor every moment. </div>
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Sadly, it couldn't last forever, and eventually we had to say our goodbyes. In order to console myself on the drive home, I admired my surroundings: the bridge-covered canals, the wineries, and the charming farm stands that lead the way. I stopped first in front of an enormous field bursting with sunflowers. Luckily I had borrowed my dad's camera for the weekend, and was able to capture the vibrant scene. As I stood their watching hundreds of yellow heads swaying gently with the wind, I couldn't help but notice their personalities. Some appeared demure, bashfully peering toward the soil; others puffed out their fuzzy chests and seemed to pose for their portrait.</div>
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I made several more stops at local farm stands, losing myself among rows of shiny fruits and vegetables; shelves lined with mason jars, baskets of fresh berries, and wheelbarrows heavy with watermelon. It was sensory overload in the best way possible, and made me glad to be alive.</div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com3tag:blogger.com,1999:blog-6190258529969238606.post-65513490315148351362011-10-12T13:30:00.001-04:002011-10-13T11:51:59.983-04:00To My Parents On Their Anniversary....<div class="separator" style="clear: both; text-align: center;">
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<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">A Green Wedding Dress</span></b></div>
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<b><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></b></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Nothing about your love means tradition</span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">—not the laughing proposal beside the mountains that an explorer </span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">named for his girlfriend’s breasts; not the green wedding dress </span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">or the dog who stood witness to the vows. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></div>
<div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; text-align: center;">
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When we came crying our way into the world, </span></span></div>
<div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; text-align: center;">
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">your faces said it all: the weary bliss, the fear, </span></span></div>
<div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; text-align: center;">
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">the knowing you did it together.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Years later and I look to your love as a warm place </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">to run back to (they all do—the animals, the people, </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">everyone whose better because of the years you’ve shared </span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">(most of all the two children who can spot love from miles away). </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Together, you made our lives good.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7q64mi0mxANMAaMraJ8erMiugiQ-qOrnlyYR3gK5wVStsrGFe5JvSmNXLz0a5utq6FnD4Np2Rqf2ihl9WTHOF-C8g9uh2fRLSihAMmokaiSaTPrxjiwD6sKfEP573CaSVigMR3A735t3z/s1600/DIVIDER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="56" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7q64mi0mxANMAaMraJ8erMiugiQ-qOrnlyYR3gK5wVStsrGFe5JvSmNXLz0a5utq6FnD4Np2Rqf2ihl9WTHOF-C8g9uh2fRLSihAMmokaiSaTPrxjiwD6sKfEP573CaSVigMR3A735t3z/s640/DIVIDER.jpg" width="640" /></a></div>
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<span class="Apple-style-span" style="color: #073763;"><span class="Apple-style-span" style="font-size: small;">Happy Anniversary to the best friends and parents </span></span><span class="Apple-style-span" style="color: #073763;"><span class="Apple-style-span" style="font-size: small;">a girl could ever ask for. </span></span><span class="Apple-style-span" style="font-size: 11.6667px;"><span class="Apple-style-span" style="color: #073763; font-size: 11.6667px;"><span class="Apple-style-span" style="font-size: small;">I love you both </span></span><span class="Apple-style-span" style="color: #073763; font-size: 11.6667px;"><span class="Apple-style-span" style="font-size: small;">more than you could ever know. </span></span></span></div>
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<span class="Apple-style-span" style="color: #073763;"><span class="Apple-style-span" style="font-size: small;">always,</span></span></div>
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<span class="Apple-style-span" style="color: #073763;"><span class="Apple-style-span" style="font-size: small;">your Maya</span></span></div>
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<br /></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-48962846722010335412011-10-11T12:52:00.001-04:002011-10-11T12:52:20.538-04:00Winner Of The Heart Keepsake Box Giveaway!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN6Jj92GD9iOYr0fAuMKPT_Q3FSJ1975yBHczLjHjSLEUfbygXSHvMV9CYUYwIMBqaKhiN86u1wmPxPcaH3P6av2oT4fsryb4mvQEL0vVayXBwcSm0y-cRJHLO12uwWe3xsSm2fUWIWGCJ/s1600/heartbox.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN6Jj92GD9iOYr0fAuMKPT_Q3FSJ1975yBHczLjHjSLEUfbygXSHvMV9CYUYwIMBqaKhiN86u1wmPxPcaH3P6av2oT4fsryb4mvQEL0vVayXBwcSm0y-cRJHLO12uwWe3xsSm2fUWIWGCJ/s320/heartbox.jpg" width="274" /></a></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #741b47;">Two weeks ago I introduced</span><span class="Apple-style-span" style="color: #351c75;"> </span><span class="Apple-style-span" style="color: #c27ba0;"><a href="http://lovingwithchronicillness.blogspot.com/2011/09/beautiful-new-giveaway-win-handmade.html">my latest giveaway</a></span><span class="Apple-style-span" style="color: #741b47;">, featuring the talented Minnesota artist Susan Kosharek. Susan generously offered her original heart keepsake box to one lucky reader. As always, today's winner has been chosen</span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #741b47;"> entirely at random....</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjilWFznraHx-fMQ2NpG5B8mHI01V2R077lhrgSqFhW0hTOCW67TeVlat5ErYQHQ41jyRqFiHB3nj9b8P7YYs_Jgxhy5_DE1upuGQ7UphOtSm3CB2v8KEDF30S_cB7k1vZTw2GlJQykla6L/s1600/smiley-icon-gifs-098.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjilWFznraHx-fMQ2NpG5B8mHI01V2R077lhrgSqFhW0hTOCW67TeVlat5ErYQHQ41jyRqFiHB3nj9b8P7YYs_Jgxhy5_DE1upuGQ7UphOtSm3CB2v8KEDF30S_cB7k1vZTw2GlJQykla6L/s1600/smiley-icon-gifs-098.gif" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNcFs0q5XyAAtW_gjm35l_sCmzmXUvYji1w_iBVv6wRzRcmZe1sJvF0UoBruP3xicqJ-DTa858IISgqiSfPlxGy2DYwVP2IO_7euS_DgsKt43X5Dvpchd7CR4XaAQSXp9PgwAg7IgX4k-v/s1600/congratulations-clip-art3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNcFs0q5XyAAtW_gjm35l_sCmzmXUvYji1w_iBVv6wRzRcmZe1sJvF0UoBruP3xicqJ-DTa858IISgqiSfPlxGy2DYwVP2IO_7euS_DgsKt43X5Dvpchd7CR4XaAQSXp9PgwAg7IgX4k-v/s200/congratulations-clip-art3.jpg" width="200" /></a></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><span class="Apple-style-span" style="font-family: Times;"><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="color: #351c75;">to</span></span></span></b></span></div>
<span class="Apple-style-span" style="color: #351c75;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span><span class="Apple-style-span" style="font-style: italic; font-weight: bold;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://draft.blogger.com/goog_153798755"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #351c75;">♡♥♬ Raven In A Blue Room ♬♥♡</span></span></a></span></span><span class="Apple-style-span" style="font-style: italic; font-weight: bold;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://draft.blogger.com/goog_153798755"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #351c75;"> </span></span></a><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #351c75;">!</span></span></span></span></div>
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<span class="Apple-style-span" style="font-style: italic; font-weight: bold;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #351c75;"><br /></span></span></span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #741b47;">Please e-mail me at mklaub@gmail.com to claim your prize and don't forget to include your mailing address. Thank you again, Susan, for making this all possible! And thanks to everyone who entered today's giveaway - rest assured there will be many more giveaways in the future. Please come back soon!</span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjilWFznraHx-fMQ2NpG5B8mHI01V2R077lhrgSqFhW0hTOCW67TeVlat5ErYQHQ41jyRqFiHB3nj9b8P7YYs_Jgxhy5_DE1upuGQ7UphOtSm3CB2v8KEDF30S_cB7k1vZTw2GlJQykla6L/s1600/smiley-icon-gifs-098.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="clear: right; color: #741b47; float: right; margin-bottom: 1em; margin-left: 1em;"></span><span class="Apple-style-span" style="background-color: white;"></span></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #741b47;"><br /></span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5jA4BHlZ2TRJ9tb5OaiEUJP7URs2jFCkXOJ6Tre-_I48_LTORyFzMct49c8zqvlTyuiDZLNYf073DMsAVcK2qSQ84ee3vJpPeAYwxbPmZTRLncbGcD2H4UT8aaJTwRJyDrvbSkxWTjxqv/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5jA4BHlZ2TRJ9tb5OaiEUJP7URs2jFCkXOJ6Tre-_I48_LTORyFzMct49c8zqvlTyuiDZLNYf073DMsAVcK2qSQ84ee3vJpPeAYwxbPmZTRLncbGcD2H4UT8aaJTwRJyDrvbSkxWTjxqv/s1600/smiley-icon-gifs-578.gif" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5jA4BHlZ2TRJ9tb5OaiEUJP7URs2jFCkXOJ6Tre-_I48_LTORyFzMct49c8zqvlTyuiDZLNYf073DMsAVcK2qSQ84ee3vJpPeAYwxbPmZTRLncbGcD2H4UT8aaJTwRJyDrvbSkxWTjxqv/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5jA4BHlZ2TRJ9tb5OaiEUJP7URs2jFCkXOJ6Tre-_I48_LTORyFzMct49c8zqvlTyuiDZLNYf073DMsAVcK2qSQ84ee3vJpPeAYwxbPmZTRLncbGcD2H4UT8aaJTwRJyDrvbSkxWTjxqv/s1600/smiley-icon-gifs-578.gif" /></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #741b47;"> Love,</span></span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="color: #741b47;"> Maya</span></span></span></div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-37454872041831729182011-10-10T12:58:00.002-04:002011-10-11T00:13:13.083-04:00October 12th Is World Arthritis Day!<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The </span><a href="http://www.arthritis.org/" style="color: #215894;" target="_blank"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Arthritis Foundation</span></a><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> is joining a global effort on <b>October 12, </b>World Arthritis Day, to increase awareness of the many forms of arthritis and to call on individuals and policymakers to take action. Observed every year since 1996, World Arthritis Day is part of a global initiative by the United Nations-endorsed Bone and Joint Decade. A main goal is to increase awareness of the <a href="http://www.arthritis.org/types-arthritis.php">100+ forms of arthritis</a>.</span></div>
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<strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="color: #990000;">What's Going On in New York?</span></span></span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPYvwHwGrOgTCOPOEIwQ3KTFw3s5JChaKcP5Nu0ijBRs0MhuFfQeqGWrW0hvTU8dANaYTDDPhGlo8gDJkYxH1CHxwjhQZ7W1zFUoVZKReW4MzxfslqIdnD6i60dQm5KeI5NFKbwlvv826b/s1600/ESB_blue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPYvwHwGrOgTCOPOEIwQ3KTFw3s5JChaKcP5Nu0ijBRs0MhuFfQeqGWrW0hvTU8dANaYTDDPhGlo8gDJkYxH1CHxwjhQZ7W1zFUoVZKReW4MzxfslqIdnD6i60dQm5KeI5NFKbwlvv826b/s320/ESB_blue.jpg" width="212" /></a><strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #0b5394;">Empire State Building Lighting:</span> </span></strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The Empire State Building will honor World Arthritis Day on October 12, 2011 by shining its world-famous tower lights in all blue! Pretty cool, huh?</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span><strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #0b5394;">Good Morning America:</span><span class="Apple-style-span" style="font-weight: normal;"> Tune in</span> </span></strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">at 6:30am on the 12th in Times Square (44th and Broadway) to show your support during the live broadcasting of Good Morning America.</span></div>
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<strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #0b5394;">Healing Hands for Arthritis: </span></span></strong><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Massage therapy can help get you moving by easing painful symptoms of arthritis. On World Arthritis Day, over 700 <a href="http://www.massageenvy.com/">Massage Envy</a> locations will join the fight against arthritis. Massage Envy, the pioneer and national leader of professional, convenient and affordable massage and spa services, will donate $10 from every one-hour massage and facial to support the Arthritis Foundation’s efforts to prevent, control and cure arthritis. Appointments are now being accepted for the Healing Hands for Arthritis event. To schedule your massage or facial appointment, contact your local Massage Envy clinic.</span><br />
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<span class="Apple-style-span" style="color: #0b5394;">Help spread the word; help spread the awareness!</span></div>
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Love,</div>
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Maya</div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-35883142280866651592011-10-07T10:34:00.001-04:002011-10-10T17:06:23.740-04:00Spotlight On Me: Bringing Depression Into The Light<br />
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<span class="Apple-style-span" style="font-size: 13.3333px;"><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">I've written this blog primarily through the eyes of a <a href="http://www.spondylitis.org/">Spondylitis</a> and </span></span><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif; font-size: small;"><a href="http://www.mayoclinic.com/health/fibromyalgia/DS00079">Fibromyalgia</a> patient, but of course </span><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">chronic illness comes in many forms. It can impact both the mind and the body. </span></span><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif; font-size: small;">Although we've made strides as a society, there is still incredible stigma surrounding mental illness; </span><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif; font-size: small;">stereotypes and prejudices that demote its sufferers to "second class citizens."</span></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><i><span class="Apple-style-span" style="font-style: normal;"><i><span class="Apple-style-span" style="color: #e06666;">"If they were just stronger, they wouldn't be mentally ill"</span></i></span></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><i><span class="Apple-style-span" style="font-style: normal;"><span class="Apple-style-span" style="color: #e06666;"><i></i></span></span><span class="Apple-style-span" style="color: #e06666;">"Everyone gets sad sometimes...those people just needs better coping skills."</span></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><span class="Apple-style-span" style="color: #e06666;"><i></i></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><i><span class="Apple-style-span" style="color: #e06666;">"Who knows what they're capable of. After all, they're not in their right minds."</span></i></span></div>
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<span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: black; font-family: Arial; font-size: 13px;"><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: black; font-family: Arial; font-size: 13px;"><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif; font-size: small;"><br /></span></span></span></span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><br /></span></span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><br /></span></span></span><br />
<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">If we're being honest, most of us have heard (or perhaps even thought?) something similar... after all, our society says it's so. </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">Both overtly and subconsciously, w</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">e're taught to remain fearful and ashamed of mental illness. It's no wonder many people hide their diagnoses. In this "don't ask, don't tell" atmosphere, those who disclose their condition can suffer profound losses - publicly, interpersonally, occupationally, medically, etc.</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">While I've mentioned depression as part of my story, I haven't delved deeply into it. I suppose it just felt simpler and safer to focus on my physical conditions. </span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><span class="Apple-style-span" style="color: #571dc4; font-family: Georgia; font-size: 15.8333px; line-height: 24px;"></span>Like any marginalized group, many of us living with mental illness feel powerless to enact change, but I'm not sold.</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> In a society where we're asked to be voiceless, what could be</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> more powerful than telling you story? What better victory than to live and to love in the face of illness? </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">The great <a href="http://www.time.com/time/magazine/article/0,9171,991276,00.html">Harvey Milk</a> once said, "</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">Hope will never be silent", and</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> this is why I began</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> my </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">"spotlight series." </span></span></span><span class="Apple-style-span" style="font-size: 13.3333px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">Those of us who are sick don't often have the chance to compare notes with each other, nor do we allow our health to be the center of attention. My hope for these interviews was to promote</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> discussion, trade resources, and most importantly, remind us all that </span></span></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">we're not alone</span></span></span></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">. </span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: 13.3333px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">I recently</span></span></span><span class="Apple-style-span" style="font-size: 11.1111px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> wrote <a href="http://lovingwithchronicillness.blogspot.com/2011/06/call-for-mental-health-spotlights-life.html">this post</a> calling for mental health spotlights, and m</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">any of you reached out in support of this idea. Slowly, but</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"> surely more people are courageously stepping forward to tell their stories. I wanted to be one of them, so I answered my own interview questions below (a powerful experience, to say the least). </span></span></span></span></span><span class="Apple-style-span" style="color: #134f5c; font-family: Georgia, 'Times New Roman', serif; font-size: small;">No matter what you're coping with, remember that someone has been there before you; they've felt the darkness of the future, and found the light again. </span></div>
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<span class="Apple-style-span" style="font-size: 13.3333px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><br /></span></span></span></span></div>
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<span class="Apple-style-span" style="font-size: 13.3333px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">To distance myself from depression and mental illness would be to deny my own story, and </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;">I wont let that happen. </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #134f5c;"><i>To my cherished readers: thank you for allowing me the respect and safety to speak my truth...</i></span></span></span></span></div>
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;">What is your diagnosis? What is the year you were first diagnosed and how old were you ? </span></span></span></b></div>
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<span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></div>
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;"></span></span></span></b><span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My first real bought of depression occurred in the fall of 2007 when I was a senior in college. Following my first extreme flare of </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Spondylitis</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">, medical problems within my family, and a sudden break-up with my long-term boyfriend, I found myself sinking over several months. After meeting with the school psychiatrist in November of 2007, I was diagnosed with depression and decided to take anti-depressants for the first time.</span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_S3TO658b-QLMmxmynqe1CF4I3IHk_g0ol3Mr-FTrIvqxThIcoQIAWNPW1P8YfroJbEx7yv35NzjYozE-r4pQ0C7BBTNtDGW-nicbMcUEOvkdynW_fP51-b6t4-Bf_TlK8ZZh9F1egFx/s1600/13868_529752190355_15400179_31523723_7687978_n-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_S3TO658b-QLMmxmynqe1CF4I3IHk_g0ol3Mr-FTrIvqxThIcoQIAWNPW1P8YfroJbEx7yv35NzjYozE-r4pQ0C7BBTNtDGW-nicbMcUEOvkdynW_fP51-b6t4-Bf_TlK8ZZh9F1egFx/s200/13868_529752190355_15400179_31523723_7687978_n-1.jpg" style="cursor: move;" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr9U2L7ZACe-xQEGXK7ExBvPcmvV79GuKesDfdKEPpDKKO7NdXSYpp3yNr7S42QiHehI2Te9WHPGDJcoZzKNMy2Xxv8-A5Hu0GS1jXhd8dsiZQY_wupwcGGhlv5rO10T4hfRJ6q6whMDl/s1600/img_1279669752100_9541.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></span><span class="Apple-style-span" style="line-height: 14px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;">What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?</span></span></span></b></span></div>
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<b><span class="Apple-style-span" style="color: #0b5394;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Perhaps the most important thing is </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">you are not alone.</span></span></span><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> There are so many paths that can lead to depression and countless lives that have been touched by it. This illness knows no boundaries. It's crucial to understand what you're dealing with, since depression can be a powerful, fast-acting illness; one that can quickly distort your reality. However bad it gets, <b>always remember there is way out</b>. Millions of people have been in that same dark place and found their way back into the light. In fact, most people have accomplished this more than once (I happen to be one of them).</span></span></span></b></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Once I "beat" depression that first time, I made the mistake of believing</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">it was gone forever. No matter what, <b>stay tuned into yourself</b></span></span></span><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b> and become your strongest advocate.</b> <b>Know your "baseline." </b>In other words,<b> </b>what feels right and what feels wrong for you emotionally? This way, you'll recognize when you're slipping. </span></span></span></b><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Maybe<b> </b>you feel distant from the "you" you've always known, but trust yourself. Depression or no depression, nothing is more powerful than your intuition.</span></span></span></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b><br /></b></span></span></span></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">In my case, </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">my mental pain is closely intertwined with my physical pain. When my pain flares</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">, I inevitably get scared. Even though my life has been filled with the </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">ups and downs of illness, pain is a game changer. It makes it difficult to see past the present moment. Now that I've experienced more than one depressive episode, I've discovered a pattern and have learned to recognize my unique warning signs: the growing insecurities, the constant tears, the numbness toward the things and people I love, and ultimately the overwhelming sense of hopelessness. </span></span></span></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="color: #571dc4;"><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Please also know that <b>depression is just as "valid" as any physical illness</b> and <b>you have a right to receive the best care possible</b>.</span></span></span></b></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> More than anything, value yourself enough to <b>seek help as soon as possible</b>. The longer you wait, the harder it may be to get on top of. There will be no judgement from anyone. On the contrary, I've been told by people how "impressive" and "brave" I am for recognizing my own needs. </span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I know it may feel easier to give up, but please <b>believe that life can and will get better. </b></span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You can and will get through this.</span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If you're in a desperate spot, <b>don't wait to reach out</b>. Talk to a trusted person in your life and tell them where your mind is. If you feel that your personal support system is lacking or unavailable, call</span></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span></b></span></b><b><span class="Apple-style-span" style="color: #0b5394;"><span class="Apple-style-span" style="color: #333333; font-weight: normal; line-height: 16px;"><span class="Apple-style-span" style="color: black;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">1-800-273-TALK</span></span></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> or any number of </span></span><a href="http://suicidehotlines.com/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">other </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">hotlines</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> with real people on the line</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">. They want to help, they want to listen, and they're not there to judge you.</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> Most of all, </span></span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">remember that your life matters...probably more than you could even imagine. <b>You are just as deserving of happiness as the next person. </b>Claim this right for yourself, and take baby steps from there. If you feel like you're just going through the motions at first, that's okay. Get your mind on anything else and force yourself to complete the task (even if it's just brushing your teeth or taking a shower). However you might choose to do it, <b>keep moving forward and fight for your peace of mind.</b></span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Georgia; font-size: 15.6px; font-weight: normal;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;">Please explain a bit how your condition affects you. </span></span></span></b></span></span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Prior to 2007, I had always known how to pull myself out of a "funk." I'd put on my favorite music, eat some ice cream, spend time with my dogs, and eventually </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">my sadness would fade. But this was different. This sadness was relentless, unpredictable and physically painful. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">There was a constant lump in my throat. My chest ached, I had no appetite, and I had constant stomach pains. The tears would come at the drop of a hat and it was nearly impossible to concentrate in class. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It felt as if I was losing myself; as if each day was taking me further away from the Maya I had always known. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Nothing felt the same. Spending time with friends and doing my favorite activities no longer brought me joy. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">At that point, </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I was only just learning how to be open about </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Spondylitis</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> and the pain associated with this disease. Now I had to somehow convey this mental anguish? I was scared and entirely lost. </span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My college was 8 hours from home and, although I spoke to my parents every day, I felt impossibly far from everyone. It was as if I was falling down some bottomless hole, while everyone and everything I knew was safe above ground. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">For the first time in my life, I lost my optimism. T</span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">he reality of having a chronic autoimmune disease truly hit me, and</span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> I started feeling trapped. Instead of finding meaning in my diagnosis, I began focusing on the injustice of living in a "broken body." That's when the hopelessness took hold. </span></span></span></b><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">During a time when my peers were excitedly planning for their futures, the thought of even one more day was unbearable. Life seemed impossibly long, and I convinced myself that I was unlovable. I convinced myself that I was alone. </span></span></span></b></div>
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<b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It's not easy to admit, but I was having suicidal thoughts. I never had a plan and I don't believe I would have ever gone through with it. However, at that point, the thought of ending my pain seemed easier than living through it. T</span></span></span></b><span class="Apple-style-span" style="color: black; font-family: Georgia, 'Times New Roman', serif; font-size: small;">o say that my parents' voices saved me wouldn't be an exaggeration. </span><b><span class="Apple-style-span" style="color: black; font-weight: normal;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">During my darkest moments, I</span></span></span></b><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> thought only of my family, who would be utterly devastated if I were to leave them. Eventually I scared myself enough with this thinking that I contacted the school psychiatrist. It wasn't an easy call to make, but it was one of the best decisions I've ever made.</span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrjH3VETDALdddSnG3eEO6UhOZlPAqIXcn0zofeBxHNgrrSTuTnTrU38E-970vrPkCyQiTOyKKk1oJCPo63A1zjXSOL4ZUl0gt7hU34oy75rGmmClkkxHsPQJ5JeiUYyUYKtGYFK0VCsmi/s1600/n15400179_31085087_1727.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrjH3VETDALdddSnG3eEO6UhOZlPAqIXcn0zofeBxHNgrrSTuTnTrU38E-970vrPkCyQiTOyKKk1oJCPo63A1zjXSOL4ZUl0gt7hU34oy75rGmmClkkxHsPQJ5JeiUYyUYKtGYFK0VCsmi/s200/n15400179_31085087_1727.jpg" style="cursor: move;" width="144" /></a><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I was prescribed </span></span><a href="http://www.zoloft.com/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Zoloft</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> (in a class of drugs called </span></span><a href="http://www.mayoclinic.com/health/ssris/MH00066"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">SSRI</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">s) and, while the change was initially subtle, my world quickly stabilized. With this bit of help, my downward spiral ceased and allowed me to gain my footing. I was cautiously optimistic at first, but as times passed and I stuck with therapy, my perspective returned. I gradually gained the tools I needed to overcome this illness. By springtime, I was feeling like myself again - just in time for graduation and the beginning of my adult life. </span></span></span></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">For the next couple of years, things remained hopeful and steady. I deemed that first depressive episode as a fluke - a simple "phase" in my life. I fell madly in love with John and started graduate school at Columbia in the fall of 2009. Consequently, my energy turned toward helping people in need. Like many aspiring social workers, I fell pretty low on my own priority list. Just as I was getting in a groove, my world gradually turned upside down. The Spondylitis medication I had relied on </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">for nearly a decade stopped working. Never before had I experienced that kind of pain; it was deep, burning, and relentless. Weeks went by and then turned into months. I had no control. As much as I tried to believe John and my parents when they said it was only temporary, I started slipping again. Last fall - nearly one year after my medication began failing - I found myself right back in that hole; the same place I had vowed never to return to.</span></span></span></div>
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<b><span class="Apple-style-span" style="color: #8e7cc3;"><b><span class="Apple-style-span" style="color: #8e7cc3;"><b><span class="Apple-style-span" style="color: #8e7cc3;"></span></b></span></b></span></b><br />
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<span class="Apple-style-span" style="color: #571dc4; font-weight: normal;"><b><span class="Apple-style-span" style="color: #8e7cc3;">Where do you get your strength?</span></b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqopg8opjuZM6DzbXoRiTbW-yMmcMFeA80STYG6ftOk7GBaXHBLHA-Gl7iuHYctvQAxn2hqUsAHxzRVt8REiZmXgqH6GZ1_0UvaxFFMB6Tj1BywyOyrFnXpIxauApWAKec8Q41acE33jOG/s1600/of%253D50%252C590%252C393-46.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqopg8opjuZM6DzbXoRiTbW-yMmcMFeA80STYG6ftOk7GBaXHBLHA-Gl7iuHYctvQAxn2hqUsAHxzRVt8REiZmXgqH6GZ1_0UvaxFFMB6Tj1BywyOyrFnXpIxauApWAKec8Q41acE33jOG/s200/of%253D50%252C590%252C393-46.jpeg" style="cursor: move;" width="200" /></a><span class="Apple-style-span" style="font-size: 15.8333px;"><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">This question has proved difficult for other spotlight participants, and now I see why. The truth is my strength is defined by many things: relationships, activities, places, memories, and things I'm sure I haven't yet identified. If you follow this blog, it's no secret that I'm blessed with an extraordinary support system; family, friends, and a fiance who love me unconditionally. I've sat beside my brother while he was <a href="http://lovingwithchronicillness.blogspot.com/2011/02/standing-tall-with-my-brother-beside-me_17.html">getting a tattoo that read "Stand Tall"</a> - a beautiful symbol of support for my battle with </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Spondylitis</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">. My mom hasn't missed an important doctor's appointment since I was little. No matter how busy he may be, my dad is </span></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">always </span></span></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">there to listen, to empathize, and to make me as comfortable as possible. My sister-in-law offers a loving ear whenever I need it, refusing to let me be alone at my worst. As tempting as it might be to isolate myself, she makes sure that this doesn't happen. Each family member (my grandma, my aunts, my uncles, my cousins, and all of John's family members) plays a unique and vital role in my life. Furthermore, I</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> have the friends I've always dreamed about. No matter how many miles or oceans may separate us, their love is </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">close by</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> and constant. They want to be involved in my daily life, come what may.</span></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCccUgLI0vhtfCQ3DNimDZ1tw7nnaASMjmM4jcgIOEfwA7vTlA4_B314-dId8cF7VH3VLTrMNKzKaUftSlkHk-GJE1e20g2DV8nZVz6lGF_tNx2bf7n2qcmEIOEyvs5XF6-2eSbK7YHqZ/s1600/DSC05660.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="134" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKCccUgLI0vhtfCQ3DNimDZ1tw7nnaASMjmM4jcgIOEfwA7vTlA4_B314-dId8cF7VH3VLTrMNKzKaUftSlkHk-GJE1e20g2DV8nZVz6lGF_tNx2bf7n2qcmEIOEyvs5XF6-2eSbK7YHqZ/s200/DSC05660.JPG" style="cursor: move;" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkOCelk6Y3wyPrc6VupgYPbUZAFzXb26Hi3KcaokDYzyKrSBvWGN1xNP_t_HHChE8GaFiPdvkT4PUs_YYS-ty2p2uBOIkYXrJI7jPVGluneYV42XpkukNdVx9QxRjepkqSswpYGu_Kk3fM/s1600/45767_539453952945_15400397_31916576_7761145_n.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkOCelk6Y3wyPrc6VupgYPbUZAFzXb26Hi3KcaokDYzyKrSBvWGN1xNP_t_HHChE8GaFiPdvkT4PUs_YYS-ty2p2uBOIkYXrJI7jPVGluneYV42XpkukNdVx9QxRjepkqSswpYGu_Kk3fM/s200/45767_539453952945_15400397_31916576_7761145_n.jpg" style="cursor: move;" width="200" /></a></div>
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<span class="Apple-style-span" style="font-size: 15.6px;"><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I also stay strong by actively choosing optimism, whenever possible. I learned from an early age that I could exist one of two ways: victimized by my disease, or grateful for the good that remained. I knew that I deserved happiness, so I pursued it with tenacity. If I couldn't keep up with my peers, I made sure to walk slowly enough to enjoy the view. I noticed and appreciated the smallest things, like the ant carrying a crumb twice its own size, or </span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">the cloud shaped like Mickey Mouse</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">. I tried not to dwell on my physical limitations, and instead I cultivated my more sedentary interests; things that couldn't be taken away from me, no matter how sick I got. I wrote and sang and painted and sculpted. I was unabashedly childish and allowed myself to be excited by the silliest things. As it turns out, this is what kept my head above the water when things got tough. </span></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_L_O75vKGe4ZSy53X8Q6j1DlR6BRSyASpGwn3ctcz4XsUxbMXoxLbMH4fx3-MMWjDyvmqpbnTR2oJ_gHrL1IAg69IArppP10xIsQNuE6MMjVTA2mQyUGK1LVbQ9czotLXmVckZr7PpYDq/s1600/168593_545166025905_15400179_32057404_764388_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Of course optimism isn't always possible, and it took me years to realize that's okay. There are times when the physical pain makes it simply impossible to focus on anything else. Sadly, I once believed that no one would love me without my optimism. I was terrified of being some kind of "downer" and worried that, without my smiles and silver linings, nobody would stick around. In some cases I was right, but those people weren't meant to be in my life for the long haul. Just like anything else, your outlook can ebb and flow. Don't fight it, but also realize when you're slipping. In my experience, depression comes when I've lost my perspective. No matter how much I may want to see the good, I just can't. Joy and humor are scarce and I lose my strength to fight. That's when I know I need help getting back on track...and that's okay too.</span></span></span></div>
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<span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><div style="font: normal normal normal 16px/17px Georgia; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr9U2L7ZACe-xQEGXK7ExBvPcmvV79GuKesDfdKEPpDKKO7NdXSYpp3yNr7S42QiHehI2Te9WHPGDJcoZzKNMy2Xxv8-A5Hu0GS1jXhd8dsiZQY_wupwcGGhlv5rO10T4hfRJ6q6whMDl/s1600/img_1279669752100_9541.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr9U2L7ZACe-xQEGXK7ExBvPcmvV79GuKesDfdKEPpDKKO7NdXSYpp3yNr7S42QiHehI2Te9WHPGDJcoZzKNMy2Xxv8-A5Hu0GS1jXhd8dsiZQY_wupwcGGhlv5rO10T4hfRJ6q6whMDl/s200/img_1279669752100_9541.jpg" style="cursor: move;" width="62" /></a><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-family: Arial; font-size: 13.2px; font-weight: normal;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr9U2L7ZACe-xQEGXK7ExBvPcmvV79GuKesDfdKEPpDKKO7NdXSYpp3yNr7S42QiHehI2Te9WHPGDJcoZzKNMy2Xxv8-A5Hu0GS1jXhd8dsiZQY_wupwcGGhlv5rO10T4hfRJ6q6whMDl/s1600/img_1279669752100_9541.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a></span><span class="Apple-style-span" style="color: #8e7cc3;">What are you most proud of?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_L_O75vKGe4ZSy53X8Q6j1DlR6BRSyASpGwn3ctcz4XsUxbMXoxLbMH4fx3-MMWjDyvmqpbnTR2oJ_gHrL1IAg69IArppP10xIsQNuE6MMjVTA2mQyUGK1LVbQ9czotLXmVckZr7PpYDq/s1600/168593_545166025905_15400179_32057404_764388_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_L_O75vKGe4ZSy53X8Q6j1DlR6BRSyASpGwn3ctcz4XsUxbMXoxLbMH4fx3-MMWjDyvmqpbnTR2oJ_gHrL1IAg69IArppP10xIsQNuE6MMjVTA2mQyUGK1LVbQ9czotLXmVckZr7PpYDq/s200/168593_545166025905_15400179_32057404_764388_n.jpg" style="cursor: move;" width="131" /></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Despite all of the uncertainty, I'm proud of how far I've come. It's exhausting to live with chronic pain, and there were times I've wanted to give up. But I didn't. In the end, I've always made the conscious decision to keep fighting. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Having experienced true depression more than once, I now place tremendous value on life, health, and happiness. I still strive for optimism, but never with the same desperation. I know that life comes in waves. I know that the people who truly love me will still love me, even if I lose track of those silver linings for a while. Chronic illness has helped me find contentment within myself, to appreciate the simple joys, and to recognize true meaning in my struggle. I'm proud of speaking openly about my illness and communicating on a deeper level with my friends, my family, and people I've never met. Because of this blog, I've connected with some of my greatest heroes. Because I've written through times when it would have been much easier to stay quiet, I believe I've helped.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiuw2yIxy3jzVA5hpLsKbun8xz9u5fY7ts-cJ61i8f3Q8Y_B3G_FA_kdkG_jov_KzGm355EZSFD6t8f7d7zrSJ4VdsvWzM6VW970JeQVuIM2xfg1wBMb1ZSJEISXNltwqm8Y3iGLWG8VDj/s1600/162811_544562560255_15400179_32037562_1811594_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="clear: left; float: left; font-family: Georgia, 'Times New Roman', serif; margin-bottom: 1em; margin-right: 1em;"></span><span class="Apple-style-span" style="font-size: small;"></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><b></b></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiuw2yIxy3jzVA5hpLsKbun8xz9u5fY7ts-cJ61i8f3Q8Y_B3G_FA_kdkG_jov_KzGm355EZSFD6t8f7d7zrSJ4VdsvWzM6VW970JeQVuIM2xfg1wBMb1ZSJEISXNltwqm8Y3iGLWG8VDj/s1600/162811_544562560255_15400179_32037562_1811594_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiuw2yIxy3jzVA5hpLsKbun8xz9u5fY7ts-cJ61i8f3Q8Y_B3G_FA_kdkG_jov_KzGm355EZSFD6t8f7d7zrSJ4VdsvWzM6VW970JeQVuIM2xfg1wBMb1ZSJEISXNltwqm8Y3iGLWG8VDj/s200/162811_544562560255_15400179_32037562_1811594_n.jpg" width="193" /></a><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;">What are three things you couldn't live without?</span></span></span></b></div>
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #571dc4; font-weight: normal; line-height: 11px;"></span></span></span></b></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">1. Love (in all its forms)</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">2. Animals</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">3. The arts</span></span></div>
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #8e7cc3;">If you could send one message to medical professionals around the world, what would it be?</span></span></span></b></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My fiance John recently began his fourth and final year of medical school. I've watched him cope with grumpy patients, endure grueling hours, and tackle countless day-long exams. I've also watched him miss out on memories with friends and family in order to be present for his patients and their families. I see him learning to cope with the daily pain and sadness that's all around him. So I know (as much as I can possible know) the sacrifice that you've all made. I thank you for all of it.</span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I want to share an excerpt from John's personal statement that he recently sent off to potential residency programs. In my eyes, it says it all...</span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">"It was during my medicine sub-internship when I truly realized the power of empathy, education, and the therapeutic relationship. I was called to readmit an elderly women (AS) that had suffered a hemorrhagic stroke one month prior; she had only been out of the hospital for several days . Through the heroic efforts of the neurosurgery team, AS was saved by undergoing a craniotomy with evacuation of the hemorrhage. The trauma from the bleed, however, left her unable to walk, feed herself, and communicate effectively. When she arrived under my care, her husband complained that her mental status had deteriorated over the past day. After a urinalysis turned up positive for leukocyte esterase and nitrites, my team suspected delirium secondary to a urinary tract infection, and we treated her appropriately.</span></span><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The next morning, I saw AS and I was surprised at how much she had improved. However, over the course of that day her mental status waxed and waned, so we continued to rule out treatable causes of delirium. Later that day, I followed up with her husband. Initially, he was very upset that all of the tests and specialty consults had failed to yield an explanation for the delirium. Although our team felt that AS's care was progressing smoothly, her spouse clearly disagreed, and he made it known to us. At the time, I remember thinking to myself: "It was just a month ago that this man's wife was perfectly healthy. Now, because of the stroke, she has had nearly all of her abilities stripped from her." I couldn't imagine the pain and frustration he was feeling, so I decided to express this to him. From that point forward, the dynamic between the husband and my team completely changed; frustration was replaced with gratitude. I also sensed that the husband did not understand the nature of delirium, and that he was equating all of the tests with treatment. I explained to him that we were looking for causes that we could treat, but that often times delirium is a process that resolves on its own. I told him that he could help by frequently orienting his wife, and bringing things from home to make her room seem more familiar. Towards the end of AS's stay, her husband stopped and thanked me. He smiled, shook my hand, and said, "John, you'll make a good doctor." It was one of the most satisfying experiences I can recall...This experience only reinforced the importance of seeing the patient and the family in context, as well as my desire to work in a field where I could approach patients from a holistic point of view."</span></span><span class="Apple-style-span" style="font-family: Arial; font-size: 11px;"></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEfkZ9uK6Uy-23YrL2VmFJf6hniYLjl7chd5mEKjLA9HnUcbs-3pMYdsz2UROzwmTV9htAp3qH6M-kgpnvjuSlfomQ8h04slo4gnAH3iAQJGbEpd1uTSRrWMBGg1L0oHxgY4yTQ2PRTBE3/s1600/170385_546063991375_15400179_32085985_1580357_o-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sometimes it is the simplest of human gestures that mean the most to your patients and their families. Don't be scared of your humanity - it is you're greatest asset.</span></span></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="border-collapse: separate; color: #571dc4; line-height: 11px;"></span></span></span></div>
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</div>Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com11tag:blogger.com,1999:blog-6190258529969238606.post-64734014639530470962011-10-02T08:00:00.000-04:002011-10-02T15:25:52.774-04:00Q&A With Jodi McKee: Pregnant And Chronically Ill<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZBze6xohiKfnzPmTHsXaXIkmLej-38Z3D_4dxCkTwLjD_X0SPpq678o9xdcHy6_8oQYy-yuN0airSkVqVPK-98ctep8ZXg3a2r87N5zO7P6hTEX5jOwGhlJh7r3op5P2MLL3oRUTlCVg5/s1600/img_1226094526786_521.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZBze6xohiKfnzPmTHsXaXIkmLej-38Z3D_4dxCkTwLjD_X0SPpq678o9xdcHy6_8oQYy-yuN0airSkVqVPK-98ctep8ZXg3a2r87N5zO7P6hTEX5jOwGhlJh7r3op5P2MLL3oRUTlCVg5/s1600/img_1226094526786_521.jpg" /></a><span class="Apple-style-span" style="color: #500050; font-family: arial, sans-serif;"><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You may recognize the glowing beauty above, since she has appeared several times on this blog. Among other things, Jodi McKee is a dear friend, a talented photographer, a <a href="http://www.arthritis.org/rheumatoid-arthritis.php">Rheumatoid Arthritis</a> patient, a wife, and most recently... a mommy-to-be! Last July, I introduced her</span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> <span class="Apple-style-span" style="color: black;">remarkable</span> </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://lovingwithchronicillness.blogspot.com/2010/07/jodi-mckee-autoimmune-portrait-project.html">Autoimmune Portrait Project</a> <span class="Apple-style-span" style="color: black;">which was later featured in <a href="http://jodimckeephotography.blogspot.com/2010/06/arthritis-today.html">Arthritis Today</a>!</span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> With regard to this project, Jodi writes " my hope is </span></span></span><span class="Apple-style-span" style="border-collapse: separate; line-height: 18px;"><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">spread the word about all of the younger people out there who are dealing with these chronic, often painful, illnesses. I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one out there."</span></span></span></span><span class="Apple-style-span" style="color: black;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> Incidentally, it was this project that first brought us together (</span></span><a href="http://jodimckeephotography.blogspot.com/2010/06/maya.html"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">click here to see my post!</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">). </span></span></span><span class="Apple-style-span" style="color: black; font-family: Georgia, 'Times New Roman', serif; font-size: small;">Five months later,<a href="http://lovingwithchronicillness.blogspot.com/2010/12/spotlight-on-talented-jodi-mckee.html"> Jodi's spotlight</a> appeared on Loving With Chronic Illness, and this spring she graciously offered one of original photographs as a <a href="http://lovingwithchronicillness.blogspot.com/2011/04/jodi-mckee-giveaway.html">giveaway</a>.</span></span></div>
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<span class="Apple-style-span" style="color: black; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">As you can tell from her adorable baby belly, Jodi's newest venture is motherhood! When I first heard the news, I was overjoyed for her and her husband, but my thoughts immediately went to Jodi's health. How would her body react to a pregnancy? Would her condition be bearable after stopping her medications? Would she and her baby both be safe? I had a million and one questions (<i>I come from a long line of worriers</i>), but thankfully everything has gone smoothly. More than that, it seems pregnancy truly suits her...I mean, just look at that photo :)</span></span></div>
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<span class="Apple-style-span" style="color: black; font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;">Following my engagement this summer, I can't deny that family and children have been on my mind. Although motherhood is years away, I still wonder about my ability to carry a baby. I've been overjoyed for Jodi and her husband, and simultaneously filled with hope for my own future. Of course every woman is unique, but at least the possibility is there. <i>Jodi: Thank you for making this interview possible, for sharing your story, and for reminding us that there is always hope.</i></span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">When did you first realize you wanted a baby? Did Rheumatoid Arthritis impact this desire at any point?</span></span></span></b></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />I think I always knew that I wanted a family one day. My husband and I got married young and didn't plan on having kids right away. When I was diagnosed with RA at age 31, all of the doctors asked me what our plans were. It kind of forced us to really decide if we wanted to go for it. </span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">How did you decide that pregnancy was right for you? When and how did you open the dialogue with your doctors about this decision?</span></span></b></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />I think the initial diagnosis allowed the doctors to bring it up first. My husband and I sat with it awhile and discussed the pros and cons. We finally decided last summer that we wanted to, so then we went to a high risk ob/gyn to make sure it would be okay. At the time, I was on methotrexate and Humira. I stopped the methotrexate last summer and then stopped the Humira when I found out that we had conceived. </span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">What was your greatest fear when considering pregnancy?</span></span></span></b></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />Aside from the prospect of being completely responsible for a helpless baby, my greatest fear was and still is having a major flare after giving birth and being unable to care for my newborn. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dW1SWLA4AuHB0WCf6Jl3yfly7E__n4CRj2Ku-e7qoeRs19AoosQ5PkCg4AiIQqr1pEwDNNpZ6ZIW-75yr0C6pwQLsi5sDuiLQcdCKBwjGClRA3dvghHy7RvTDCnWts6j1OTihqOEGnqe/s1600/216237_10150165563894182_788429181_6620820_47100_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-dW1SWLA4AuHB0WCf6Jl3yfly7E__n4CRj2Ku-e7qoeRs19AoosQ5PkCg4AiIQqr1pEwDNNpZ6ZIW-75yr0C6pwQLsi5sDuiLQcdCKBwjGClRA3dvghHy7RvTDCnWts6j1OTihqOEGnqe/s200/216237_10150165563894182_788429181_6620820_47100_n.jpg" width="200" /></a><b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">What was it like finding out you were pregnant? What went through your mind? How did you tell your husband? Your family?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJyRi4Uabr3BuBEqsTGSJHcCjsE6rZeyALbHZR8PUmV2K6smlkzpxNNfK3cBvMFj6oMKlCrdOe-JTL00z8_HtFsyFpYLYKFwAOq9_VaIchdv7ZyByCNijJGxSbqzX-io6U56zKzLZLPcKo/s1600/jodi+22+weeks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />It was completely surreal at first. I suspected that I was, and when my husband and I got home from a weekend out of town, I took the test. We both said that those two minutes of waiting felt like two seconds! I was so happy that the test was positive, but I think we were both a little freaked out.<br /><br />We kept it as our secret for a couple of weeks, but we wanted to tell our families. Mother's Day was fast approaching, so we bought Grandmother cards and sent them to our moms with a note to call us when they got them. They were ecstatic! My husband's mom said it was the best Mother's Day present he could have ever given her. My mom was so happy and excited and my dad started crying. Everyone was so happy for us!</span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">How has your pregnancy been going? How are you feeling physically, both in terms of typical pregnancy side effects and with regard to Rheumatoid Arthritis? </span></span></span></b><br />
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My pregnancy has been going very well. I had some nausea and some extreme fatigue in the first trimester, but it wasn't too bad. The second trimester has been pretty good over all. I've experienced some aches and pains here and there along with quite a bit of brain fog and forgetfulness, but I'm used to those things with RA.<br /><br />RA has been a different story. I was really hoping to go in to some sort of remission during pregnancy, but it hasn't happened. I recently had to stop taking my NSAID, as it isn't safe after the second trimester. So, now I am back on everyone's favorite: prednisone. Since I've been on the prednisone, I've been doing okay. Not 100%, but manageable. I'm hoping for an easy and relatively pain-free third trimester.</span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">How did your expectations for pregnancy compare the reality of it? Has it been better or worse than you imagined? </span></span></span></b><b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Have there been any surprises?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_wBM8QPeY07UKaEjCpsw4S0c8FFZ6Qa8BDnUvurD_DX0cWHhhZ8DdtIRMShLFtuuhH3UTvQxiKLttCStsG7eLAD1m8fxRjWsesPjYJDWNtWEIJ6I0vLY7WYnK3ZCTs4L0tTVvBfcguejr/s1600/jodi+25+weeks.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />I'm not sure what expectations I even had. I really had no idea what to expect, so the whole thing has been a big learning experience for me. The biggest "surprise" is just how awesome and crazy and surreal it is to see my baby on the ultrasound screen and to feel all of the kicks! </span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Do you have any weird cravings?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_wBM8QPeY07UKaEjCpsw4S0c8FFZ6Qa8BDnUvurD_DX0cWHhhZ8DdtIRMShLFtuuhH3UTvQxiKLttCStsG7eLAD1m8fxRjWsesPjYJDWNtWEIJ6I0vLY7WYnK3ZCTs4L0tTVvBfcguejr/s1600/jodi+25+weeks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_wBM8QPeY07UKaEjCpsw4S0c8FFZ6Qa8BDnUvurD_DX0cWHhhZ8DdtIRMShLFtuuhH3UTvQxiKLttCStsG7eLAD1m8fxRjWsesPjYJDWNtWEIJ6I0vLY7WYnK3ZCTs4L0tTVvBfcguejr/s320/jodi+25+weeks.jpg" width="214" /></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />I had a period of craving potatoes all the time (home fries, french fries, potato chips, you name it), but that was it. I've had a little more of a sweet tooth as well, but nothing crazy like pickles and ice cream. Not yet, at least!</span></span></div>
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<b><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">What is your greatest wish for your child? </span></span></span><i><span class="Apple-style-span" style="color: #a64d79;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">(tough question, I know....)</span></span></span></i></b></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />That <b>is</b> really tough. I just hope they will be healthy, know who they are, and be the best them that they can be. </span></span></div>
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<span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Definitely talk to your doctor(s) about the pros and cons. Luckily, RA specifically isn't </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;">really high risk. Some of the medications make extra monitoring necessary, but for the most part, people with RA do quite well during pregnancy. I know it isn't the same for other autoimmune diseases, though. But if you really want to have children, work with your doctors to do what you can to make that happen.</span><span class="Apple-style-span" style="color: #500050;"></span><span class="Apple-style-span" style="color: #500050;"></span><span class="Apple-style-span" style="color: #500050;"></span><span class="Apple-style-span" style="color: #500050;"></span><span class="Apple-style-span" style="color: #500050;"></span><br />
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Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com2tag:blogger.com,1999:blog-6190258529969238606.post-74364865350417081002011-09-29T08:00:00.000-04:002011-09-30T14:09:49.313-04:00The "Bad Vein Club" & Choosing Gratitude<div class="separator" style="clear: both; text-align: center;">
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If you're unlucky enough to belong to the "Bad Vein Club," you know it can impact your quality of life...especially if you're chronically ill.<br />
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Unfortunately, needles have played a leading role in my story. When I was a little girl in a large amount of pain, the first step was always blood work. Each time a new doctor entered the scene; each time a symptom arose; whenever a new medication was prescribed, my blood was constantly monitored and it will continue to be this way for the foreseeable future. </div>
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While it's all been necessary, it's never been pleasant. In my 25 years, I've sat in hundreds of fluorescent exam rooms. Someone inevitably asks, "Has anyone told you how <i>bad</i> your veins are?" and I nod wearily. It can take anywhere from 2-6 attempts for a successful blood draw, and when it's all said and done, I'm left feeling like an over sized pin cushion. I became accustomed to this scene from a young age, and have learned when to move into autopilot. In those moments, I focus only on my breathing. As the needle goes in, I breathe out; the needle comes out, and I breathe in...</div>
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I live some version of this every month while receiving my <a href="http://www.orencia.com/index.aspx">Orencia</a> infusions. When I began this medication last fall, I knew it would mean more time spent in the hospital, more nurses, and more needles...but I didn't care. Without effective medication, my disease was raging out of control, and showed no signs of letting up. Each muscle, joint, tendon and ligament burned like small wildfires. My outlook was bleak, my fatigue was overpowering, and I was beginning to feel hopeless. I needed my health back like I needed air.</div>
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Three months after receiving the first dose, the pain began subsiding, and I began seeing those same "bad veins" quite differently. Instead of resenting them, I gave thanks for them. I knew my body could have easily rejected this new drug, but I was one of the lucky ones. Each month I watched as my miracle drug flowed into my arteries and, instead of medication, I saw possibilities....</div>
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<i>Here's to helping myself out of bed in the mornings....</i></div>
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.<i>..To playing tirelessly with my dogs, and bending down for sloppy kisses...</i></div>
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<i>...To hugging my fiance without pain...</i></div>
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.<i>..To getting in my car and just going...</i></div>
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<i>...To holding up my end of friendships, and weekends away with the girls...</i></div>
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<b> <span class="Apple-style-span" style="color: #0b5394;"> Drip</span></b></div>
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<i>...To the hope flowing through me. </i></div>
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With this new perspective, came a new experience at my monthly infusions. Call me crazy, but I've actually begun looking forward to them! My mom accompanies me each month, and on the rare occasion when she isn't able, another loved one takes her place. I treasure this quality time with her, and feel so grateful to have her by my side. She's been there through the good times and the worst times, and I truly don't know where I'd be without her.<br />
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While the needles will never be enjoyable, I've come to appreciate a window of time intended just for me. For those few hours, I know I'm actively choosing to care for myself, to re-fuel, and to fight for my health. And, while I know my body could always stop responding to Orencia, I choose gratitude...gratitude for modern medicine, for my mother's loving hand, and for another month of relief.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ujrUis8cPHDUC4P3ne9qqy1l4WZIeH_5EfqgJ9Klrmf5IRWirEoegPN-bMlhIOqhqpqvEl6BzhLvX2fJql0_OZrDQPLamvOhEoSUPtdEDCprcas4owocwFUnIYOMEgZwClSb0AcN7-w4/s1600/Divider-1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="72" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ujrUis8cPHDUC4P3ne9qqy1l4WZIeH_5EfqgJ9Klrmf5IRWirEoegPN-bMlhIOqhqpqvEl6BzhLvX2fJql0_OZrDQPLamvOhEoSUPtdEDCprcas4owocwFUnIYOMEgZwClSb0AcN7-w4/s640/Divider-1.png" width="640" /></a></div>
Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-51764877447780502502011-09-27T08:00:00.000-04:002011-09-28T07:28:11.799-04:00Beautiful New Giveaway! Win A Handmade Heart Keepsake Box<br />
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<span class="Apple-style-span" style="border-collapse: separate; font-family: Times;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNCfdIyFK8NO73rr2n4WE6GawZKFJOXlr2iY5y_Af25oQoAC51H2V09UJhHeZ_oVV307FDxW0NYd9-OKeRwkvJLlESxtUhF7vt2mN920gPzb103_LXorAS-xuhrui5aF38XznYrjpFt0A/s1600/ShabbyBlogsDividerB.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="64" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNCfdIyFK8NO73rr2n4WE6GawZKFJOXlr2iY5y_Af25oQoAC51H2V09UJhHeZ_oVV307FDxW0NYd9-OKeRwkvJLlESxtUhF7vt2mN920gPzb103_LXorAS-xuhrui5aF38XznYrjpFt0A/s640/ShabbyBlogsDividerB.jpg" width="640" /></a></span><br />
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<span class="Apple-style-span" style="border-collapse: separate; font-family: Times;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNCfdIyFK8NO73rr2n4WE6GawZKFJOXlr2iY5y_Af25oQoAC51H2V09UJhHeZ_oVV307FDxW0NYd9-OKeRwkvJLlESxtUhF7vt2mN920gPzb103_LXorAS-xuhrui5aF38XznYrjpFt0A/s1600/ShabbyBlogsDividerB.jpg" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"></a></span>No matter how wonderful our support systems may be, there is a certain loneliness that comes along with having a chronic illness. It's hard to explain unless you've lived it, but I suppose anyone who has had significant struggle in their life (health-related or not) knows what I mean. You can lean on other people, but at the end of the day, <b>you</b> are fighting this battle. Because of my struggle with multiple pain conditions, I probably require more "alone time" than the average gal. The truth is, I find tremendous peace in solitude and gain my greatest insight through reading and writing (hence, the blog). Of course, not everything I think is intended for the public eye. Stick with me here - this thought relates to today's giveaway...</div>
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<span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">was excited when my friend <a href="http://lovingwithchronicillness.blogspot.com/2010/10/meet-lovely-betsy-kratoska-baker.html">Betsy</a> introduced me to</span><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Susan </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Kosharek</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">, a talented artist from Rochester, Minnesota. Susan owns her own company called <a href="http://insipidnot.com/MuseZings/">Muse Zings</a> and also has <a href="http://www.etsy.com/shop/musezing">an Etsy store</a>. My mother, who is an amazing artist herself, has always said she is drawn to artwork that "doesn't take itself too seriously." I've definitely inherited that tendency from her. For example, I just purchased a silly, painted zebra head on which to hang our keys. It's right beside our front door and just makes me smile every time I see it. Susan's work has the same effect on me. If you scroll down, you'll see several wonderful examples of her pieces (furniture, mirrors, birdhouses, etc) and I think you'll see what I mean.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLuO972pd9O8wQjKmWgwUCTw9gZSh9IvVm2iBsuOpoaDNHKALNOhUSXD5LNkGmwVW1f3uQbZoaenSIfoEV0l-ktcdNef7T61WDPqn-KuVbtDdLssAd-cKegqaYmg4ZuXW5LwPEUwLtx4/s1600/muse8.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLuO972pd9O8wQjKmWgwUCTw9gZSh9IvVm2iBsuOpoaDNHKALNOhUSXD5LNkGmwVW1f3uQbZoaenSIfoEV0l-ktcdNef7T61WDPqn-KuVbtDdLssAd-cKegqaYmg4ZuXW5LwPEUwLtx4/s200/muse8.jpg" style="cursor: move;" width="136" /></a><span class="Apple-style-span" style="background-color: white;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">And now the exciting part! Susan has graciously offered to host today's giveaway. I jumped at the chance, knowing you would all love her work as much as I do. And here's where that first paragraph ties in. Susan is offering a beautiful "Heart Keepsake Box" (pictured at the top of this post) to one lucky reader. This special box</span></span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> opens to reveal rice paper; a space to write personal messages, special memories, inspirational quotations, etc. I just love that idea! As I said, there are just some things that aren't meant for the world to see; poems, phrases, thoughts that need safekeeping. I can't think of a better place to store your treasures than in this beautiful box.</span></span><br />
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<span class="Apple-style-span" style="font-size: large;"><b><span class="Apple-style-span" style="color: #a64d79;">You can enter this giveaway a total of 3 times...</span></b></span></div>
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<b><span class="Apple-style-span" style="color: #6aa84f;">For entry #1</span></b><span class="Apple-style-span" style="color: #6aa84f;">:</span> Go to <a href="http://Facebook.com/">Facebook.com</a>, "like" <a href="https://www.facebook.com/pages/Muse-Zings/200827399958763?ref=ts">Muse Zings</a>, and don't forget to leave a comment on this post letting me know you did. If you don't have Facebook, then head over to Susan's website and take a look around. Then leave a comment on this post telling me what your favorite creation is.</div>
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<b><span class="Apple-style-span" style="color: #6aa84f;">For entry #2: </span></b>Please give me a little feedback about this blog. What's working for you? What might you like to see me do differently? Are you hoping to see a post about something that I haven't covered? I'd love to hear from you!</div>
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This contest will run until <b>Tuesday, October 11th</b> (2 weeks from today). The winner will then be chosen at random and announced the following day.<span class="Apple-style-span" style="font-size: large;"> <b><span class="Apple-style-span" style="color: #a64d79;">Good luck everyone!</span></b></span></div>
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Love,</div>
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Maya</div>
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Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com5tag:blogger.com,1999:blog-6190258529969238606.post-24040209972337209072011-09-24T09:00:00.000-04:002011-09-25T12:32:41.634-04:00Spotlight On Those Who Love Us: Marian Brown<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> life has been blessed with incredible women, and <a href="http://lovingwithchronicillness.blogspot.com/2010/09/cause-so-near-dear-to-me-please-read.html">my future sisters in law</a> are no exception. I first met the Ferrarone family when I was 16. I was volunteering at <a href="http://lovingwithchronicillness.blogspot.com/2010/03/for-87-years-sunshine-camp-has-hosted.html">Sunshine Rotary Camp</a> - a special week for kids and young adults living with Muscular Dystrophy. Each counselor was assigned to one camper and, although I never worked one on one with the girls, we developed a unique bond over those years. I was immediately drawn to their strong, beautiful sprits. Little did I know, they'd soon be part of my family.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: x-small;"><b><span class="Apple-style-span" style="color: #674ea7;">Laura (21) and Sara (24)</span></b></span></td></tr>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">While each of the Ferrarones have enhanced my life, they've also introduced me to a slew of amazing people. Marian Brown, for example, has been Sara's best friend for the past 19 years. She is a bright spot in all of our lives, and although she and Sara live far apart, distance is no match for this awesome duo. They are truly each other's chosen sisters and I love seeing them together. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We're all better for knowing Marian, and today's spotlight</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> will underscore that. Sit back, relax, and get ready to read about two remarkable women and the power of friendship.</span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">Who in your life is living with chronic illness? Please say a bit about the</span></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;"> disease itself and when they were diagnosed.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt13ey_X7IVpmQ5ZyDKIPX2hTRjAQ5HNMJ-RnwKc6iw-TWQymETJs10SburOvOR4BkNclPEa65Mb7niWxyK87Nc2LUz_0aZyIxvO5U-YGwkuEz8MCQQuClsqjRmLkFtrAHct11Yx_MhCL6/s1600/68080005_1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt13ey_X7IVpmQ5ZyDKIPX2hTRjAQ5HNMJ-RnwKc6iw-TWQymETJs10SburOvOR4BkNclPEa65Mb7niWxyK87Nc2LUz_0aZyIxvO5U-YGwkuEz8MCQQuClsqjRmLkFtrAHct11Yx_MhCL6/s200/68080005_1.JPG" width="112" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfBbplrmeOR_1N-JkoRE1_tO85CR-c0UYkofCWWn9KIYrrFBAPIgp3rhCMeb-pPIBolf0YCqTDnSTmXTJA0nBRlV0tRTkj0cLBBHaB24Cjyh7hvbIjphru1_sPUUct5oSXrUuhPOMEaDOX/s1600/best-friendsth.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfBbplrmeOR_1N-JkoRE1_tO85CR-c0UYkofCWWn9KIYrrFBAPIgp3rhCMeb-pPIBolf0YCqTDnSTmXTJA0nBRlV0tRTkj0cLBBHaB24Cjyh7hvbIjphru1_sPUUct5oSXrUuhPOMEaDOX/s1600/best-friendsth.jpg" /></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My best friend in the entire world, and my biggest hero, Sara Ferrarone. Sara was diagnosed with </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><a href="http://www.mdausa.org/disease/fa.html">Friedreich's ataxia</a> (FA)</span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">; a progressive neuromuscular disease when we were finishing kindergarten. Her younger sister; who I consider to be my adoptive little sister, Laura, also has Friedreich's ataxia. Laura was tested for FA, and subsequently diagnosed, immediately following Sara's diagnosis (so Laura was two or three when she was diagnosed). Maya, the wonderful woman who keeps us all updated and educated via this blog, is engaged to Sara and Laura's older brother, John. So, the girls are her sisters as well. </span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRz_omhqLLurS-QDt-YI_gBEFqxl_rQAoKgbgmI4TwBk2JY5E1Jcm3GdMMd4Ec6WRGT9ZaLk5-NsBLdWF82YYWkdBF2sV7lqBNPu0n_1GegP1AeyU7wUb1o59Tgv-gTTZLggDGILBcav6M/s1600/DSCN0251_1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRz_omhqLLurS-QDt-YI_gBEFqxl_rQAoKgbgmI4TwBk2JY5E1Jcm3GdMMd4Ec6WRGT9ZaLk5-NsBLdWF82YYWkdBF2sV7lqBNPu0n_1GegP1AeyU7wUb1o59Tgv-gTTZLggDGILBcav6M/s200/DSCN0251_1.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkdXzj3ins6JyhAegc-uHOxZ7k-qMVWnAZV8tuwGI97CqtvGdkOUAOokK5ZfErKT5jnqNK4ZySXU2ApZB9BmN22v2cC4IE0ExuoNsXf0hRbukT1Pl90iRNKiST2OTGcwovjWKcFw748cVs/s1600/of%253D50%252C590%252C442-6.jpeg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg439wO8ipK_Z4CE4kGd1QF5H2e1k3CFC3f8ybyCUjvdiDbT-v51riiAPIkmE_EdPUT45fumtX74Z2QsYD1cF_vESRj-xfCbM8QqmesdNR9McoorKS97My0tNohOk9ryqvG7a6w-CHhCl9A/s1600/P1020482.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Friedreich's ataxia is an autosomal recessive genetic disorder. This means you must get a copy of the defective gene from both your mother and father. So, it's onset is birth, but depending on the exact gene you get the progression of the disease can differ. About 1 in every 22,000-29,000 develop this disease. Family history of the condition raises your risk. It is a very rare disease, and mainly affects the muscles and heart. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions. Symptoms generally begin in childhood before puberty. </span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt13ey_X7IVpmQ5ZyDKIPX2hTRjAQ5HNMJ-RnwKc6iw-TWQymETJs10SburOvOR4BkNclPEa65Mb7niWxyK87Nc2LUz_0aZyIxvO5U-YGwkuEz8MCQQuClsqjRmLkFtrAHct11Yx_MhCL6/s1600/68080005_1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">As a child, I always described FA to friends as the following: It's like there is a small monster sitting on your spinal column that slowly chews away at all of the cords that lead to the rest of the body, i.e. your neural pathways, so that it becomes difficult for your body and brain to effectively communicate. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If you'd like to know more about the actual disease and medical implications please </span></span><a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002384/"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">click here</span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">.</span></span></span><br />
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">What is your relationship like?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV_m2iF59XaPIQ7cg8avUwIGXmbU1Hg7ocHIpn5CG3HSnnZchnUNMcRDXGrxcOkKcWul2TArgNU7OkjTR34qFci5zFoQnKgQMJU2ZME1I84o4H6gyf3KbLdzB0lB1x4TdYYRiUxqSXC0Mu/s1600/100_0896.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="clear: right; float: right; font-family: Georgia, 'Times New Roman', serif; margin-bottom: 1em; margin-left: 1em;"></span><span class="Apple-style-span" style="font-size: small;"></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFdLOGseyjNT6YE2ub1-YAV9657GXU1I86abJgOy69ChruSQqwjhPRD_DiyR7M5JO-bxZ0tWC928AtOHYUiFRTDoDY8Q_r4svMCCILcn75xBIy7OZqS8LcKYKFdEWIM1yyr3NHy4ec51L/s1600/100_1193.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPiJfA_2vnIsYPqXiyGU460K07QITRA1-IY0i4vV18uNG3BmYyxJPljNgVhaAUa_2k-RHM600Ysa_01NcEEBXnSxk2MFHo12n17a1qlXE-2aGah5GyBuAjjCJx0kV6ay3EN7tvYTAK_Gu/s1600/100_1265.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Every day I feel so blessed to have Sara and Laura, and the entire Ferrarone family in my life. I could not ask for a better group of people to call my second family, and to love eternally. Like all relationships that start in childhood, my relationship with Sara has evolved drastically in the 19 years we have known one another. Today, our relationship is centered around laughter. For the past seven years, I have lived 2,000 miles away in Colorado, so our main modality of conversation is emails. I wait anxiously as I open my gmail account hoping to hear from Sara. I find myself smiling as I get to read a page into her life. Today, she swims, horseback rides at Equicenter, bakes the best cookies in the world, makes scrap books for those she loves, and just brightens the world with her presence. When I come home to NY in the summer for a visit Sara always has epic plans set up for us. Last summer we spent countless hours at her cabin in the Adirondack Mountains making crafts, watching Glee, and talking about the woes and realties of </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">life. We also went out venturing in their off roading four wheeler - quite the adventure! I'm not sure if Sara has recovered from my driving yet! I long for my adventures with Sara, and the wisdom and love that she brings to my life and all of the lives of those who know her. She has a fantastic child-like sense of wonder about the world, and a sensitivity to others that is unparalleled.</span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">This summer, while visiting I had the privilege of meeting her new boyfriend, Kody. Kody works for a wheel-chair company, and they met when he came over to their home to repair her chair a few months ago. Kody’s involvement in Sara’s life has opened a whole new chapter for her. My boyfriend, Jon, also visited from Colorado. We had a great time at the lake house, and - like always - I smiled endlessly from listening to her belly laugh. Sara seems the happiest now I have ever seen her, regardless of different health ailments that bother her daily. </span></span><br />
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Twenty-years later, I still remember the day we met on the bus like it was yesterday. There she was: long blonde hair, welcoming smile. Like always she had matching braids, and fantastic over-alls that were all the rage in the early 90's. Even at five, I could see there was something different about this young girl. When she spoke to you, she looked right in your eyes with her piercing blue gaze. She talked about her animals at home, about her parents, and her brother and sister. She was utterly aware of the world and the people around her. Just like today, her love and passion for the world were evident. Just like today, </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">her understanding of the world was much greater then I could or will grasp. I got off the bus, running all the way home so I wouldn't forget her phone number, 586-5867. It's hard to believe it, but I think I internally recognized that day that I had met one of life's greatest gifts- a soul mate of sorts. The past twenty years between us has been nothing short of tremendous. The amount that Sara has taught me, and continues to teach me daily; about patience, honor, virtue, humor, love, confidence, overcoming obstacles, and countless others, will stay with me long beyond my days here on earth. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLakMJ8IL2Rk8UMIgUzNrRXUlAclc6pUfH79O58ARpFyFQR4Kztoqw9kzRO8zyZNkDDdMqUs6l0QF4vxPOWXlmBSR05ita8U0OzRZ-ezVtHdivKTwd1KARNJwPNVRy2l9fP-OmJJVDhyRK/s1600/DSCN0284_1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpjtBBHoqCEvObxvfQLw0c5xNrAmvSo7gQq2ElxWVtQl_kLx62Ohzebg_ksh_bKEEO34oAjlsaMD8kz2Xmb1-8v4xHTiskRZfy3a0mwE3Mwjd8yS9CejLPkv18p577GabV3774x0Wz0Eb2/s1600/saraparents.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpjtBBHoqCEvObxvfQLw0c5xNrAmvSo7gQq2ElxWVtQl_kLx62Ohzebg_ksh_bKEEO34oAjlsaMD8kz2Xmb1-8v4xHTiskRZfy3a0mwE3Mwjd8yS9CejLPkv18p577GabV3774x0Wz0Eb2/s200/saraparents.jpg" width="200" /></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #0000ee;"></span>Sara and Laura both currently live with their parents, in upstate NY, where they each have full-time aids. Their mother, Margaret, retired in order to spend more time with her girls. They also live with Belle, their gorgeous black lab and George, Sara’s ice chasing cat. </span></span></span></div>
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<span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">Has your relationship changed in any way following their diagnosis? If so,</span></span></span></b></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;"> how?</span></span></span></b></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Honestly, I don’t feel that our relationship changed following Sara or Laura’s diagnosis. I was accustomed to being around people with chronic illness (my mother, Dr. Susan Taylor-Brown is a social worker whose academic focus was on HIV/AIDS related issues). It was simply another aspect of life, that we would adjust to. </span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdGnq29rnNb8X4luqI4TKlG4_9kQ7qOsyOPRBmb1-5m3OExBvbN7OiBSwwEHBnt99z-H1QF97hawP93X0puLEx9YGGLWPmHc22tqqipbuxWEoD1HirZoYxorwmon5B20NIC2hOxLpXw11V/s1600/DSCN2054.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="clear: right; float: right; font-family: Georgia, 'Times New Roman', serif; margin-bottom: 1em; margin-left: 1em;"></span><span class="Apple-style-span" style="font-size: small;"></span></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdGnq29rnNb8X4luqI4TKlG4_9kQ7qOsyOPRBmb1-5m3OExBvbN7OiBSwwEHBnt99z-H1QF97hawP93X0puLEx9YGGLWPmHc22tqqipbuxWEoD1HirZoYxorwmon5B20NIC2hOxLpXw11V/s1600/DSCN2054.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdGnq29rnNb8X4luqI4TKlG4_9kQ7qOsyOPRBmb1-5m3OExBvbN7OiBSwwEHBnt99z-H1QF97hawP93X0puLEx9YGGLWPmHc22tqqipbuxWEoD1HirZoYxorwmon5B20NIC2hOxLpXw11V/s200/DSCN2054.JPG" width="200" /></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Our elementary school principal wrote a story about us at our fifth-grade graduation. She talked about us walking down the hallway together. I was holding Sara’s suspenders, making sure she didn’t fall. We were laughing, simply enjoying the time with one another. That seems to be the way it’s always been. </span></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt13ey_X7IVpmQ5ZyDKIPX2hTRjAQ5HNMJ-RnwKc6iw-TWQymETJs10SburOvOR4BkNclPEa65Mb7niWxyK87Nc2LUz_0aZyIxvO5U-YGwkuEz8MCQQuClsqjRmLkFtrAHct11Yx_MhCL6/s1600/68080005_1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a></div>
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<b><span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-weight: normal;"><b><span class="Apple-style-span" style="font-weight: normal;"><span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;"><span class="Apple-style-span" style="color: black; font-family: Times; font-weight: normal;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYC-zONpbK6aegBk4ql0YRjeYJu48D6WBe9eqP9wygkfa5huTRxYqIrO21l6yvGqZHKW_8voiKWViUwzmns1vOGzfWQB7W-SqeXPiZGDqvudPGyPiM4B8KGBoBnJggOAhZPmYiplXw_Lgu/s1600/2058564errd0xn81z.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="71" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYC-zONpbK6aegBk4ql0YRjeYJu48D6WBe9eqP9wygkfa5huTRxYqIrO21l6yvGqZHKW_8voiKWViUwzmns1vOGzfWQB7W-SqeXPiZGDqvudPGyPiM4B8KGBoBnJggOAhZPmYiplXw_Lgu/s640/2058564errd0xn81z.gif" width="640" /></a></span>What has been the most difficult part of coping with your loved one's </span></span></span></b></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">illness?</span></span></span></b></span></b></span></b></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9yuYmu0zC5h7EUdBP1TSlBmmYWXr9bpkXp1Io20iMkSC8xQsZpAyQ-_NBGev3KK9ADbfHKgIaad4G_mAf00-iyUB7tOElBHP_IjpmyF3_UUqS-37FW8sttTSR9cxdojZS1Yx7ngiGMzn/s1600/DSCN0286_1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The other difficult aspect of the disease is the progressive </span></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">nature of it. The changes seem small over time, but when you look at the mile markers along the way it becomes difficult to </span></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">swallow. I have been so lucky to have both Sara and Laura in my life, and there is not a day that I do not feel that way. When Sara and I were in third grade, our parents were called into a meeting. The teachers were concerned that Sara and I were too close, and that it would eventually be detrimental to both of us as we grew up. I looked at my mother (she retells the story, it seems to have escaped my own memory) and my teachers and said, “We all only have one life to live. We are all going to die. Isn’t the price of loving someone eventually losing them? We need to enjoy the time we have with one another. Don’t take us away from one another”. </span></span><br />
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<b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">Where do you get your strength?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFdLOGseyjNT6YE2ub1-YAV9657GXU1I86abJgOy69ChruSQqwjhPRD_DiyR7M5JO-bxZ0tWC928AtOHYUiFRTDoDY8Q_r4svMCCILcn75xBIy7OZqS8LcKYKFdEWIM1yyr3NHy4ec51L/s1600/100_1193.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFdLOGseyjNT6YE2ub1-YAV9657GXU1I86abJgOy69ChruSQqwjhPRD_DiyR7M5JO-bxZ0tWC928AtOHYUiFRTDoDY8Q_r4svMCCILcn75xBIy7OZqS8LcKYKFdEWIM1yyr3NHy4ec51L/s200/100_1193.JPG" width="200" /></a><b><span class="Apple-style-span" style="color: #8e7cc3;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFdLOGseyjNT6YE2ub1-YAV9657GXU1I86abJgOy69ChruSQqwjhPRD_DiyR7M5JO-bxZ0tWC928AtOHYUiFRTDoDY8Q_r4svMCCILcn75xBIy7OZqS8LcKYKFdEWIM1yyr3NHy4ec51L/s1600/100_1193.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="clear: left; float: left; font-family: Georgia, 'Times New Roman', serif; margin-bottom: 1em; margin-right: 1em;"></span><span class="Apple-style-span" style="font-size: small;"></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Sara & Laura give me strength. Margaret and Bob (their parents) give me strength. Maya</span></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> and John </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;">(the girls’ brother and sister-in-law) </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;">give me strength . My parents and family give me strength. My belief in a life well lived, in the power of laughter and love, give me strength.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9yuYmu0zC5h7EUdBP1TSlBmmYWXr9bpkXp1Io20iMkSC8xQsZpAyQ-_NBGev3KK9ADbfHKgIaad4G_mAf00-iyUB7tOElBHP_IjpmyF3_UUqS-37FW8sttTSR9cxdojZS1Yx7ngiGMzn/s1600/DSCN0286_1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span style="letter-spacing: 0px;"></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9yuYmu0zC5h7EUdBP1TSlBmmYWXr9bpkXp1Io20iMkSC8xQsZpAyQ-_NBGev3KK9ADbfHKgIaad4G_mAf00-iyUB7tOElBHP_IjpmyF3_UUqS-37FW8sttTSR9cxdojZS1Yx7ngiGMzn/s1600/DSCN0286_1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9yuYmu0zC5h7EUdBP1TSlBmmYWXr9bpkXp1Io20iMkSC8xQsZpAyQ-_NBGev3KK9ADbfHKgIaad4G_mAf00-iyUB7tOElBHP_IjpmyF3_UUqS-37FW8sttTSR9cxdojZS1Yx7ngiGMzn/s200/DSCN0286_1.JPG" width="200" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRRBjjoNfzL9ozObbdBZ1zntTcR2Bs7q_f99SNzu7Tj1C_RaifPzY-SAZsQo7AXUKXRbfPWB1_-ZbfFbU-YMBt4PHBP0vfGQ-vVp1jUdDHVvq_sPlvp43KMvxEqB3DLY2Zs69mg30NGYdd/s1600/mail.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I am able to process love and loss by connecting with my family, and also through doing my own cathartic art. I make sure to step back </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">when needed, but also to be 100% present whenever possible; to remember that every moment truly is a gift. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdGnq29rnNb8X4luqI4TKlG4_9kQ7qOsyOPRBmb1-5m3OExBvbN7OiBSwwEHBnt99z-H1QF97hawP93X0puLEx9YGGLWPmHc22tqqipbuxWEoD1HirZoYxorwmon5B20NIC2hOxLpXw11V/s1600/DSCN2054.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="color: #e06666;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9yuYmu0zC5h7EUdBP1TSlBmmYWXr9bpkXp1Io20iMkSC8xQsZpAyQ-_NBGev3KK9ADbfHKgIaad4G_mAf00-iyUB7tOElBHP_IjpmyF3_UUqS-37FW8sttTSR9cxdojZS1Yx7ngiGMzn/s1600/DSCN0286_1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><span style="letter-spacing: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">What advice would you give to someone who also cares for an individual</span></span></span></b></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;"> living with illness and/or disability? What helps you?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirlqsjirqMisAzJZDX_mU9bZXbAJIO5SHAEg-rIosDomuCD5W87WggcKt-gzWk8TUkpjXSrF0oN60XMgDqtluAbwHethR2Hz3lat8I_ZOde6fygE1Ni7-KR38PPheP8VjEzVDGql7LsDwP/s1600/CIMG0062.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirlqsjirqMisAzJZDX_mU9bZXbAJIO5SHAEg-rIosDomuCD5W87WggcKt-gzWk8TUkpjXSrF0oN60XMgDqtluAbwHethR2Hz3lat8I_ZOde6fygE1Ni7-KR38PPheP8VjEzVDGql7LsDwP/s200/CIMG0062.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirlqsjirqMisAzJZDX_mU9bZXbAJIO5SHAEg-rIosDomuCD5W87WggcKt-gzWk8TUkpjXSrF0oN60XMgDqtluAbwHethR2Hz3lat8I_ZOde6fygE1Ni7-KR38PPheP8VjEzVDGql7LsDwP/s1600/CIMG0062.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="clear: left; float: left; font-family: Georgia, 'Times New Roman', serif; margin-bottom: 1em; margin-right: 1em;"></span><span class="Apple-style-span" style="font-size: small;"></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV8bd7kzI3VM_Y5ErlRtQoOyyVIy2hnTgVbfewuVOnKCiglusCz7NTk865B1ONe-tqeRn7Okd_CVg63A6-9WwEt5m1HAxCoCNCjsh7pwU5PCLxxSy_ujRI7gkQCft76yR5eJS-YfUTh1RN/s1600/DSCN2057.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Just remembering that every single day that you have with that person is a gift. It's difficult for all of us to constantly stay in the present, and in order to love someone with chronic illness, it's really crucial to. Planning too far in advance leads to upset as plans often have to be adjusted, and are difficult to make. Looking in the past can be equally as difficult as it make us sometimes focus on the losses over time as opposed to the triumphs of today. If it's </span></span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">possible to focus your attention on the present with the people you love, there are no added expectations, plans, losses, gains, failures- you simply are able to love and be with them. Sometimes with chronic illness, our biggest gift can simply be the time we have with those we love. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRRBjjoNfzL9ozObbdBZ1zntTcR2Bs7q_f99SNzu7Tj1C_RaifPzY-SAZsQo7AXUKXRbfPWB1_-ZbfFbU-YMBt4PHBP0vfGQ-vVp1jUdDHVvq_sPlvp43KMvxEqB3DLY2Zs69mg30NGYdd/s1600/mail.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRRBjjoNfzL9ozObbdBZ1zntTcR2Bs7q_f99SNzu7Tj1C_RaifPzY-SAZsQo7AXUKXRbfPWB1_-ZbfFbU-YMBt4PHBP0vfGQ-vVp1jUdDHVvq_sPlvp43KMvxEqB3DLY2Zs69mg30NGYdd/s1600/mail.jpeg" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRRBjjoNfzL9ozObbdBZ1zntTcR2Bs7q_f99SNzu7Tj1C_RaifPzY-SAZsQo7AXUKXRbfPWB1_-ZbfFbU-YMBt4PHBP0vfGQ-vVp1jUdDHVvq_sPlvp43KMvxEqB3DLY2Zs69mg30NGYdd/s1600/mail.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"></span></span></a><span style="letter-spacing: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaPImuzN1QaJA0BgcDwV3_jrecN6r4Au2l54YF2I44WvrTh-CdXO5FVGWX138Yj3cU9jcaMw5NlXq_kSRdvG8gcGl_785XwX66eKDyubEQM4yTZJ-K_N_lod0sNY-Sdnt8zIecsJMB6ZBM/s1600/100_1253.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Also, set up a much needed support network for both yourself and the people you love. We are human, and we can't do it all ourselves. Loving people with chronic illness is difficult at times, and you need to make sure that you have someone there to give you the equal support that you are providing those you care for. </span></span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></div>
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<span style="letter-spacing: 0px;"><span class="Apple-style-span" style="color: #e06666;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">If you could send one message to all the medical professionals in the world, </span></span></span></b></span></span><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #ea9999;">what would it be?</span></span></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV_m2iF59XaPIQ7cg8avUwIGXmbU1Hg7ocHIpn5CG3HSnnZchnUNMcRDXGrxcOkKcWul2TArgNU7OkjTR34qFci5zFoQnKgQMJU2ZME1I84o4H6gyf3KbLdzB0lB1x4TdYYRiUxqSXC0Mu/s1600/100_0896.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></a><span style="letter-spacing: 0px;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Medical professionals- I appreciate and </span></span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;">respect all that you do. Hopefully technology and research will reach a point where we understand these chronic diseases and illness more completely so that in return, the future can be a bright one for both those affected by the disease and illness, and those that love them. I believe in your ability to work miracles, I have to. </span><br />
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Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com6tag:blogger.com,1999:blog-6190258529969238606.post-48514638859587986912011-09-21T08:00:00.000-04:002011-09-21T08:00:12.421-04:00An Important Guest Post: Working with Chronic Illness<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-size: large;">Working with Chronic Illness</span></div>
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Written by James Simpson</div>
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<span class="Apple-style-span" style="font-size: large;"></span>One of the toughest things about having a chronic illness is the inability to support yourself. Some sick people have families or a spouses to support them, but not everyone has that advantage. If you have an illness which keeps you housebound, free time can be more of a burden that a luxury. Working can help bring back a sense of purpose and accomplishment. It can also provide income and fill your time with something positive. Here are some ways you can generate money even if you are stuck at home.</div>
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<span class="Apple-style-span" style="color: #0b5394;"><b>Writing Articles</b></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOHSpag9VW3stasZ_7RdrY1BfbrVMzr__HPLa1ome-oDFFIlJAnDGv-fwJWmZrJnTJL2lM-aqHKmIgVgcG3PhVf6_bW0a_d-piBlFuwrkayvRps0a5p5QyqOv0Bu48QiUuePMupCH2uJ1X/s1600/smiley-icon-gifs-808.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOHSpag9VW3stasZ_7RdrY1BfbrVMzr__HPLa1ome-oDFFIlJAnDGv-fwJWmZrJnTJL2lM-aqHKmIgVgcG3PhVf6_bW0a_d-piBlFuwrkayvRps0a5p5QyqOv0Bu48QiUuePMupCH2uJ1X/s1600/smiley-icon-gifs-808.gif" /></a>People that run websites are always looking for good writers. If english is your first language, you already have an advantage. Writing content can sometimes be a low paying job, because you are competing with workers from economically disadvantaged countries like India or The Philippines. But, the quality of these foreign writers can often be very poor. Website owners will many times pay a premium to writers that speak english as a first language and work hard to provide good service. If you are interested in writing articles for extra money, visit the website freelancer.com. You can setup an account for free and start offering bids on projects. You may have to write articles to provide examples of your work, before any of your bids get accepted. With some persistence you can bring in $50 or more per day. It is not a fortune, but it can help pay any bills and extra expenses.<br />
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Also, avoid websites where you contribute articles on a revenue sharing basis. This is a poor way to make money off of your hard work. Your best bet would be to establish an ongoing relationship with a site owner and work on providing them with the best articles that you can. Many times you can get your price per article up if you consistently provide good work.<br />
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<b><span class="Apple-style-span" style="color: #0b5394;">Starting a Blog</span></b><br />
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The internet has come to be a dominant force in our society today. It's growth will continue and affect how everyone in the world does business. As more businesses come online, knowledge of the internet will become more and more important. One of the best ways to start learning and make a little money while your at it is to start a blog. Blogs are very easy to set up and are free on many services like blogger.com and wordpress.com. Focusing on a subject that you know very well can help you write great articles. Good content will help you connect with other bloggers and will give you more exposure.<br />
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If you really want to make money with your site, you might want to focus on a subject that pays well, especially financial topics. An example of this would be to start a blog about car loans. This might not be the most fun subject to write about, but if you worked on it for a solid year or two, you might have a money making site on your hands. You can monetize the site with programs like Google Adsense or sell the "loan leads" that you generate, to lead brokers.<br />
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<b><span class="Apple-style-span" style="color: #0b5394;">Learn Web Design</span></b><br />
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The great thing about learning web design is that you don't need to go to school to do it. All the information that you need is already out there online. One of the first things you can do to get started is to get a copy of the software Dreamweaver. This can help you turn the complicated code that websites are built around, into a visual format. Working with this over time will improve your skills up to the point where you might want to do some freelance jobs. A good place to find these jobs would be at freelancer.com. You will have to make a portfolio and gain some experience before taking on one of these jobs, but this is a great skill to have in the Internet Age.<br />
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<b><span class="Apple-style-span" style="color: #0b5394;">Part Time Jobs</span></b><br />
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One of the toughest things about working with an invisible illness is that it can be very difficult to make people understand your situation. If you decide to work a part time job, you might have to explain your situation to your boss. This can help you get some leeway, when it comes to things like hours and sick days. An office environment can be tough if you feel very ill, but getting out of the house is essential. Not everyone with a severe illness can work in an office setting. In this instance, a freelance internet job might be your best bet.<br />
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<b><span class="Apple-style-span" style="color: #0b5394;">About the author</span></b><br />
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James focuses on the site <a href="http://www.chronicfatiguetreatments.com/">Chronic Fatigue </a><a href="http://www.chronicfatiguetreatments.com/">Treatments</a>, which serves as an informational center for people with fatiguing diseases like<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224/"> Chronic Fatigue Syndrome</a>, <a href="http://www.arthritis.org/disease-center.php?disease_id=10">Fibromyalgia</a>, <a href="http://www.chronicfatiguetreatments.com/wordpress/theories/adrenal-fatigue/">Adrenal insufficiency</a>, and <a href="http://www.mayoclinic.com/health/hypothyroidism/DS00353">Hypothyroidism</a>. He also plans to improve the site by building a treatment rating system and expanding to include other illnesses.Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com0tag:blogger.com,1999:blog-6190258529969238606.post-18875991115096208422011-09-18T14:26:00.000-04:002011-09-19T10:27:55.369-04:00Love From Bermuda<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8WphhS3OcsNaq8YT6oDV8WdvSZupmHRq4a4OuPuq15iPaU2W4eFEPjfXKl1cym98zILvK03sx8oftRSHC_HeeaZ1NFKntn1rhwKzzbCocJOX4to05jmsCha5NpKwpxHq55UTzw32-LkbP/s1600/8548872-pink-hibiscus-with-foliage.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8WphhS3OcsNaq8YT6oDV8WdvSZupmHRq4a4OuPuq15iPaU2W4eFEPjfXKl1cym98zILvK03sx8oftRSHC_HeeaZ1NFKntn1rhwKzzbCocJOX4to05jmsCha5NpKwpxHq55UTzw32-LkbP/s1600/8548872-pink-hibiscus-with-foliage.jpg" /></a><span class="Apple-style-span" style="font-size: large;">Hello!</span><i> Loving With Chronic illness</i> is officially back in action, and I wanted to say thanks again for being so patient. Between our recent trip to Bermuda, a wonderful visit to see John's family, and the beginning of classes, I haven't had much free time. Rest assured, though...you've all been in my mind.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC1XjkH9YetPlpn5RWrNAnf27NscJXBI9fvYeqGFdS9hZSdaGqHW5yr9WKo1MHSJbvqojti9X_rN1YMbATYOfOgVbdKFrqeQ6VUISETZi7Glv6mEAb6kUyYTlExBToF4bzXW_z6J5uEUar/s1600/IMG_0200.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC1XjkH9YetPlpn5RWrNAnf27NscJXBI9fvYeqGFdS9hZSdaGqHW5yr9WKo1MHSJbvqojti9X_rN1YMbATYOfOgVbdKFrqeQ6VUISETZi7Glv6mEAb6kUyYTlExBToF4bzXW_z6J5uEUar/s200/IMG_0200.JPG" width="200" /></a>As I mentioned in my last post, Bermuda was incredible! The truth is John and I <i>really</i> needed this time together. Although we moved in together and got engaged this past June, we've had <i>very</i> little quality time together. Sharing a home is wonderful and we both cherish the small daily joys, like waking up and ending our days together. But because John recently began his fourth year of medical school, there just hasn't been much time to breathe. He's been confronting the natural pressures of becoming a doctor, and returning home with little physical or emotional energy left to spare. I was desperately trying to hold on to that shiny, new engaged feeling and dove right into wedding planning...especially when I realized that the whole world was apparently booking their wedding at the same time. John began studying for his board exam and applying to residency programs for next year, so wedding colors and cake tastings became low on his priority list. It was as if someone hit the "fast forward" button on our lives, but we were simultaneously drifting apart. Suffice it to say, it was the perfect storm.<br />
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We knew that John's medical school schedule wasn't going to make things easy, but now the realities are quickly sinking in. I'm incredibly proud of his work ethic and his commitment to his patients, but it comes at a cost - both for him and our relationship We both knew it was time for a break, so when we realized he had 5 days off, the search was on for wallet-friendly vacations. We found a 4 night package to Bermuda, and the rest is history!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHjrvZIpeCbuHHVmROzjqaE4Q-tmE8mkqg3q6kvqFyYFanyQnAPpElci2eeCzzQqr-ygJK5OncccJKk_Osxe2QzK0nY0AF-JJZjuFFbIXUlYj3D2J_vfxZjtLNvg9Vwn784SXjOjyt9QOe/s1600/conch-borderh.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="64" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHjrvZIpeCbuHHVmROzjqaE4Q-tmE8mkqg3q6kvqFyYFanyQnAPpElci2eeCzzQqr-ygJK5OncccJKk_Osxe2QzK0nY0AF-JJZjuFFbIXUlYj3D2J_vfxZjtLNvg9Vwn784SXjOjyt9QOe/s320/conch-borderh.jpg" width="320" /></a></div>
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As soon as we touched down, we were surrounded by turquoise water, palm trees and islnders who were just as warm as the weather. We successfully left our stress back in New York, and went into full-fledged "vacation mode." When we reached our hotel (<a href="http://www.grottobay.com/">Grotto Bay Beach Resort</a>), we soon discovered that we had two natural caves in our backyard! After we dropped our bags in our room, we rushed to explore them and were amazed by their beauty; the the stalagmites and stalactites, the crystal formations, and the gorgeous illuminated water inside.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghN7WDX8tddTY_XFrabCbStfHKVeiuAVARz9woFdZeyPqL_ViV0WEfq6imLOh_awfknSN6hUTGFLTOsX6pl-x4DGfeTSgq_DglGWHkUJgXrvoYjj9OVImckRwHBYDYRLYyKthRlL-rsMnN/s1600/IMG_0236.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuz9VSlm5dZXVAWFhQDvbUpPFVdaY0eoxYCncqtBzVTDWxMY7ZQ_wd6v5udV_wGZcTuNGzYSk2ymUqPUGsViIQSuGi-ugNLP8JByRrEroQh3C5ECirwrwYIXQbe3aD-yecWQdS6BEV6nSo/s1600/IMG_0230.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuz9VSlm5dZXVAWFhQDvbUpPFVdaY0eoxYCncqtBzVTDWxMY7ZQ_wd6v5udV_wGZcTuNGzYSk2ymUqPUGsViIQSuGi-ugNLP8JByRrEroQh3C5ECirwrwYIXQbe3aD-yecWQdS6BEV6nSo/s200/IMG_0230.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLyRwTs_V4gvGEyidTVwCUuFeDPhZetQM_ZvxkdoYN63IUziFfbllKbzivvQn88d2L_B3D_SwbSG2ZFN5U5d9ZMaZQzpWbVkzqGGmH6-pJrjyar-azPSmMTIsmg4WMkQ_DFZytblDWrjMQ/s1600/IMG_0225.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLyRwTs_V4gvGEyidTVwCUuFeDPhZetQM_ZvxkdoYN63IUziFfbllKbzivvQn88d2L_B3D_SwbSG2ZFN5U5d9ZMaZQzpWbVkzqGGmH6-pJrjyar-azPSmMTIsmg4WMkQ_DFZytblDWrjMQ/s320/IMG_0225.JPG" width="320" /></a><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghN7WDX8tddTY_XFrabCbStfHKVeiuAVARz9woFdZeyPqL_ViV0WEfq6imLOh_awfknSN6hUTGFLTOsX6pl-x4DGfeTSgq_DglGWHkUJgXrvoYjj9OVImckRwHBYDYRLYyKthRlL-rsMnN/s200/IMG_0236.jpg" width="150" /></div>
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John and I are perfect travel buddies, which was first apparent during <a href="http://lovingwithchronicillness.blogspot.com/2010/06/celebrating-body.html">our amazing trip to Italy</a> last year. We both cherish new experiences, and would rather spend our time and money making memories than acquiring things. We both love learning and exploring; meeting locals, understanding history, tasting new cuisines, and seeing the sights. This trip was no exception. We were both seeking some combination of relaxation and adventure, and while laying around with tropical drinks was glorious, we also wanted to learn about the country we were visiting. John studied the local bus routes and, by the time we left for home, we had actually seen most of the island!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDyyHx-SMR0l6tQ_D8g5UvS4Idxo5QmWIJbquR5lxhnnZ-ufW6vMJ4O41grUjuzaJ-MdCgQlBa7vUniiaM9sgehsIUNvX2qFPtVjc7RKv4Cpiqc39OTtQxNaEKYtcAG-j6yVhTUect8t6/s1600/IMG_0100.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDyyHx-SMR0l6tQ_D8g5UvS4Idxo5QmWIJbquR5lxhnnZ-ufW6vMJ4O41grUjuzaJ-MdCgQlBa7vUniiaM9sgehsIUNvX2qFPtVjc7RKv4Cpiqc39OTtQxNaEKYtcAG-j6yVhTUect8t6/s200/IMG_0100.JPG" width="200" /></a>Undoubtedly the highlight of our trip (and perhaps our lives) was swimming with four gorgeous dolphins! We had decided that we'd do one special activity, so when we discovered there were dolphins nearby, the decision was easy! I had been lucky enough to do this once before with my dad, but never thought I'd get another chance. On our way there, we looked like two excited children on Christmas; we couldn't wait to share this experience together and meet our new aquatic friends.<br />
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When we arrived at <a href="http://www.dolphinquest.com/">Dolphin Quest</a>, we saw several large pools filled with bobbing gray heads. Although the experience was quite expensive, we valued the program's commitment to public education, conservation, and research (<a href="http://www.dolphinquest.com/index.php/current_projects?cfid=53">click here</a> to read more about their current projects). We met our trainer, changed into our gear, and lined up by the pool to learn more about these incredible animals. We could hardly wait to get in!<br />
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As we listened to the trainer speak, the dolphins swam by repeatedly, studying us with great focus and curiosity. Every 10 seconds, we noticed a little head popping up in the distance and had a hard time controlling our laughter. We later found out this action was called "spy hopping", which was essentially just to get a better look at us. When we finally made our way into the water, we could barely contain our excitement. The experience felt as natural as possible. For example, instead of holding onto their fins, we swam among our new friends were really able to appreciate their behaviors and interactions. Ready for the best part? There was a <b>baby</b> dolphin in the group! We were told to clap more than usual, in order to boost her self esteem :) We followed our instructor's lead, sending signals through our body language and praising them with fish. At one point, we made a certain hand motion and suddenly had two dolphins in our hands! I will never forgot those eyes: the kindness, warmth, and intensity behind their gaze. We were told to lean in for a kiss, and we were more than happy to oblige. If you wish to see the rest of the pictures from our encounter (there are 160!), just <a href="http://www.printroom.com/ViewGallery.asp?userid=DolphinQuestBermuda&gallery_id=2738117">click here</a>. I honestly don't think we stopped smiling for the rest of the day.<br />
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<span class="Apple-style-span" style="font-family: inherit;">We also visited two beautiful beaches - </span><span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="color: black;"><a href="http://www.bermuda4u.com/Attractions/bermuda_attractions_beaches_john_smiths_bay.html">John's Smith's Bay</a></span></span><span class="Apple-style-span" style="font-family: inherit;"> and <a href="http://www.bermuda4u.com/Attractions/bermuda_attractions_beaches_horseshoe_bay.html">Horseshoe Bay Beach</a><span class="Apple-style-span" style="font-family: inherit;">; the former being a secluded local favorite, and the latter being the most popular beach in Bermuda. At John Smith's Bay, we were one of maybe 10 people on the beach, and understood exactly why the locals loved it so much. </span></span><span class="Apple-style-span" style="line-height: 14px;"><span class="Apple-style-span" style="font-family: inherit;">The water was clean and crystal clear, and </span></span><span class="Apple-style-span" style="font-family: inherit;">we loved lounging on the pale pink sand</span><span class="Apple-style-span" style="line-height: 14px;"><span class="Apple-style-span" style="font-family: inherit;">. I even scooped some up into one of my pill bottles - a hiding spot that I thought was unlikely to be discovered in U.S. customs (I</span><i><span class="Apple-style-span" style="font-family: inherit;"> know, I'm such a rebel</span></i><span class="Apple-style-span" style="font-family: inherit;">). I guess that's one perk of having to take medication! Horseshoe Bay beach was (unsurprisingly) shaped like a horseshoe, and is famous for its caves and coves along the shoreline. The beach was packed when we visited, so although we didn't stay very long, it was an incredible sight.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2fvqclggRQNSYc9ALiREI88MUz33a-nrRLlZNTadyXaR3hsZeAkNolu5y7mHxUX7sLwXHEeP9lZqQIKPJFRVvp1gD1q0XcOOTWe_HJgxEHeKL81_j-mVhkIiM3IC9QEXHZ4TcqxsGAzd1/s1600/IMG_0195.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="font-family: inherit;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2fvqclggRQNSYc9ALiREI88MUz33a-nrRLlZNTadyXaR3hsZeAkNolu5y7mHxUX7sLwXHEeP9lZqQIKPJFRVvp1gD1q0XcOOTWe_HJgxEHeKL81_j-mVhkIiM3IC9QEXHZ4TcqxsGAzd1/s320/IMG_0195.jpg" width="163" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcvVVXZSnrTd0FJoAv4Mi_2VjMeWvluIVZk75EnQeFVjB9NXWT4JzFfihruMLToWgjdA10_bJn7RuuJHymqzhUciGEk-GgwYNQmpwpYL4YKQVaVSQAkN8wwfRl2wmsqL6IvYtEDYGo_q-4/s1600/IMG_0197.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: inherit;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcvVVXZSnrTd0FJoAv4Mi_2VjMeWvluIVZk75EnQeFVjB9NXWT4JzFfihruMLToWgjdA10_bJn7RuuJHymqzhUciGEk-GgwYNQmpwpYL4YKQVaVSQAkN8wwfRl2wmsqL6IvYtEDYGo_q-4/s200/IMG_0197.JPG" width="200" /></span></a><span class="Apple-style-span" style="line-height: 14px;"><span class="Apple-style-span" style="font-family: inherit;">I will honestly never forget this time with John. </span></span><span class="Apple-style-span" style="line-height: 14px;">We're both beginning our final year of graduate school, and this adventure helped rejuvenate and prepare us for the year ahead.</span><span class="Apple-style-span" style="line-height: 14px;"> We've returned home as a stronger, happier, and more secure couple and I can't wait to start planning our next trip together!</span><br />
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<span class="Apple-style-span" style="line-height: 14px;"><span class="Apple-style-span" style="font-family: inherit;">Love,</span></span></div>
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<span class="Apple-style-span" style="line-height: 14px;"><span class="Apple-style-span" style="font-family: inherit;">Maya</span></span></div>
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<img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4VJyUHFjTCSRKocZv_SNn4o4chgQk6D1yI6q8hE8z2dr7PJGyjuCd59Y1xHEkfXP6KnKGn3ZEQ1FUGumm5tZ5zEDvKUfMu8CLn5L74cpMVIhhCndznJrlxge3JCqazJSWnimlEIRNucpf/s400/Jet-Sweet-Spring-DIVIDER-sn.jpg" width="400" />Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com3tag:blogger.com,1999:blog-6190258529969238606.post-55189746138689744202011-09-11T11:27:00.000-04:002011-09-11T11:27:05.978-04:00A Quick Hello (Be Back Very Soon)<br />
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Hi my lovely readers,</div>
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I'm sorry for my absence this past week! John and I took a mini vacation to Bermuda (aka heaven), which was just what we needed. Because of the demands of John's medical school, we haven't seen much of each other this summer. We called this our "engagement party." I've always wanted to go to Bermuda, and this was easily the best trip of my life.</div>
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After a major flight delay, we arrived back home at 2:30am on the day of my first classes (more on them later). Then we headed up to Rochester to visit John's family, and that's where we are now. I can't wait to share photos and memories from the trip, but for now I'll just say that Bermuda is a dream: pink sand beaches, turquoise waters, pastel houses built into cliffs. AND WE SWAM WITH DOLPHINS!!! They are incredible, sensitive, soulful, and fun-loving creatures. We felt beyond lucky to hang out with them for a little while. Thanks for sticking with me and I'll write again soon :)</div>
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Love,</div>
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Maya</div>
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Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com1tag:blogger.com,1999:blog-6190258529969238606.post-67846126079788700702011-08-31T20:07:00.000-04:002011-08-31T20:07:23.465-04:00And The Winner Is...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2lhc-9zXZtpHgzb3uJVp3j-T7rKhJGmgFfO0RczaTYA1B4RcRhyphenhyphengt_MRGgPC5pId59zzBXFgBV8_Vg7kZdXkx_yQWhDjh8wE3wZjEh38Kzc_xVlNQhieP7uhm2tAgU2JgxX2DmIEZt2cx/s1600/1133697s4vy20n8ea-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2lhc-9zXZtpHgzb3uJVp3j-T7rKhJGmgFfO0RczaTYA1B4RcRhyphenhyphengt_MRGgPC5pId59zzBXFgBV8_Vg7kZdXkx_yQWhDjh8wE3wZjEh38Kzc_xVlNQhieP7uhm2tAgU2JgxX2DmIEZt2cx/s1600/1133697s4vy20n8ea-1.jpg" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" /></a>I've already announced today's giveaway winner on <a href="https://www.facebook.com/pages/Loving-With-Chronic-Illness/154691214599760">my Facebook page</a>, but I wanted to make it official. I was thrilled to connect with Sherry, the owner of <a href="http://www.etsy.com/shop/mermaidsdream?ref=pr_shop_more">Mermaid's Dream</a> on <a href="http://Etsy.com/">Etsy.com</a>, and even more excited when she offered to part with one of her gorgeous clutch purses! As always, the winner was chosen at random...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" /></a></div>
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<span class="Apple-style-span" style="font-size: large;"><b><span class="Apple-style-span" style="font-size: x-large;"><span class="Apple-style-span" style="color: #674ea7;">Congratulations</span></span><span class="Apple-style-span" style="color: #674ea7;"> </span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: #674ea7;"><span class="Apple-style-span" style="font-weight: normal;">to "Cleverlikewoah"!!</span></span></span></b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color: #674ea7;">!</span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" /></a>I haven't heard from you yet, so please e-mail me at mklaub@gmail.com. Please include <b>your choice</b> of purse from Sherry's shop, as well as your mailing address. If I don't hear from you by <b>September 14</b>, I'll need to pick a new winner. Thank you for your understanding.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRNyh2AMGUm9z4NBph-kbiTIWcy-RN8HLg2bmN2ShQTRrcZeNA1B0otCJcTQYTpt8KeUsV5Dqfjo-FsMur9LGm5IWf12FLCcDjyKUJkJXN6oa-sB3mqk1zi-GQSOI7wpmifLcYR64cd5xR/s1600/smiley-icon-gifs-578.gif" /></a><span class="Apple-style-span" style="color: #674ea7;">For everyone else - stay tuned for more amazing giveaway coming up soon! As always, thanks for reading</span></div>
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Love,</div>
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Maya</div>
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Mayahttp://www.blogger.com/profile/12464918027158800223noreply@blogger.com0