After officially being diagnosed with Fibromyalgia this past April, I wrote a post entitled "A Medical Game Plan."While it wasn't easy to accept a second diagnosis, it provided some clarity and relief.
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.
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 "Fibro fog" - 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.
I'm thrilled to report this is all changing!
Last spring Dr. Berman suggested replacing my anti-depressant (Zoloft) with a new drug calledSavella- 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, butDr. Dana DeVito, MDwas 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 didn't feel depressed at some point." It was a simple concept, but it went a very long way.
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 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.
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.
If you're a loyal fan, you probably know the name Casey Abrams. Casey was a Season 10 American Idol contestant and won the hearts of many across the country with his smooth jazz vocals and skills on the bass. During the summer 2011 American Idol Tour, Casey began investing in a cause that is close to his heart: a new awareness campaign and contest called IBD Icons for inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis (UC).
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.
Casey has teamed up with the Crohn’s and Colitis Foundation of America (CCFA)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.
The top nine finalists have been chosen, and the public can nowvote 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!
Jeter-Boldt, a finalist from Kansas City, Missouri, shared her personal
story of life with IBD. Her story began on a sunny August day nearly 13
years ago, when her father died from complications related to Crohn’s
disease. Four years later she was diagnosed with Crohn’s disease, a diagnosis later changed to ulcerative colitis, another form of IBD.
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.
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.
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.”
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...
When were you first diagnosed and how old were you ?
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!
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
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 "IBD Icon"--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.
Please explain a bit how your condition affects you.
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.
Where do you get your strength?
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.
What are you most proud of?
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.
What would winning the title of IBD Icon mean to you?
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.
A few weeks ago I posted an interview with my friend Jodi about being pregnant and chronically ill, and recently I shared my own poem entitled Considerations For My Unborn Child. Today's guest post fits right in. Although it appears otherwise, I promise you I'm not baby-obsessed (just yet).
Arthritis, pregnancy and the path to parenthood was written by esteemed Australian authorSuzie 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...
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 rheumatoid arthritis (RA) 9 years ago at age 28.
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.
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.
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.
Why did I write this book?
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.
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.
I started writing Arthritis, pregnancy and the path to parenthood 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!
What is the book about?
Arthritis, pregnancy and the path to parenthood 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.
The book covers the following: 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.
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 “I feel like you have crawled inside my head and written down my thoughts” 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.
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.
Message to women thinking about starting a family
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.
I always believed I would become a mother – it was never something I questioned. So, when diagnosed with RA and asked “... you don’t want to have children do you?” I was determined to never let RA become a barrier to me achieving that which I hold so dear in my heart.
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.
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 is 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.
Suzie Edward May
You may visit Suzie’s website to order your copy of her book (payment via Paypal) - www.suzieedwardmay.com
You may also contact Suzie by email at email@example.com
you deserve to know the love of a dog on your face andhow fall smells and cider tastes. Mostly, you should know how your father will make you his life.
For you, I want all of it: how the day seems full of anything at sun up, the honks of geese overhead that always make me laugh. You should sing songs you've heard in showers or in cars going a little too fasttoward a boy who needs you a little too much.
We want you here with us someday,but still I can't help thinking you don't deserve my hurting limbs or the pills lined like soldiers each morning. Pain has no place in you, but still I can't bear the going without;
I want to know you like I've never wanted anything.
This month I published an interview with my friend and mommy-to-be, Jodi McKee. We spoke about the experience of being pregnant and chronically ill, and I admired her willingness to talk openly about her fears, her joys, and her hopes for the future. With this in mind, it seemed like a good time to share the poem above. Although I'm only 25 and motherhood is far away, a girl can still dream. I often wonder what my baby might look like. Will he or she have John's eyes or mine? When I see John playing with a child, I can't help but imagine the kind of father he'd be. I picture the trips we'd take with our little family, or the traditions we'd start.
As usual, chronic illness complicates my daydreams. As a young woman living with constant pain, I have my fair share of concerns. Will I pass these conditions on to my children? Could I live with myself if that happened? Since I wouldn't be able to take my medications during pregnancy, how intense would my pain become? Would pregnancy impact my health long-term? Would I physically be able to care for my newborn? What kind of mother could I be while living with chronic pain? And the list goes on.
"Considerations For My Unborn Child" wasn't an easy poem to write, but it was an important one. Something about speaking directly to my child whom I may never know was intensely emotional. The truth is, even if I were perfectly healthy, there is no guarantee when it comes to motherhood. Do I want to be a mother one day? I believe so. Do I think it would be wonderful to have my own child? Yes. But I also know that families come in all shapes and sizes, and that love can conquer just about anything. John and I will cross that bridge when we get to it, but in the meantime, thank you for reading. As always, I'd love to hear from you, so please feel free to leave comments.
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.
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.
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.
I'm living in New York, studying social work, and making time to be Maya: a daughter, a sister, a fiance, a friend, a writer, an animal lover and someone coping with 2 medical conditions (Spondylitis & Fibromyalgia). Every day I'm learning to live and love not despite chronic illness, but because of it. I treasure my readers, so please comment or write to me at firstname.lastname@example.org. Thanks for stopping by!