Spotlight On The Inspirational Megan Smith!

I'm excited to present the latest participant of my Spotlight Series and officially expand the scope of this project past physical illnesses and/or disabilities. Meet the incredible Megan Smith! Megan and I met at Colby College where we had many common friends. Although we never spent much time one on one, I always enjoyed her presence and never heard anything but awesome things about her. 

Megan lives with Tourette's Syndrome (TS), a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette's syndrome is defined by multiple motor tics (kicking, stamping, jumping, touching, etc.) and/or vocal tics (grunting, throat clearing, shouting, etc.) lasting for more than one year. According to the Tourette Syndrome Association (TSA), "symptoms of TS vary from person to person and range from very mild to severe, but the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities...most people with TS and other tic disorders will lead productive lives...there are no barriers to achievement in their personal and professional lives."

Megan is a prime example of how those living with this syndrome can excel in their lives and achieve anything they want. I know her story will inspire you.

What is the year you were first diagnosed? How old were you ? 

I was first diagnosed in 2003 when I was 17, although I've had noticeable symptoms since I was 4.  

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

Tourette syndrome is not a death sentence.  Yes, it is most likely a chronic condition that you will deal with for the rest of your life in some capacity (although your symptoms may decrease or abate in early adulthood), but you can get through it.  Learning to cope with the tics, as opposed to fighting them, is often a much easier way to deal with the symptoms.  Be creative - get regular massages to soothe the physical pain from the tics, avoid loud, crowded spaces when you are tired if you know that it will exacerbate your tics, etc.  Self-consciousness is one of the hardest things to cope with - practice explaining to people about your tics - it will boost your confidence and help get rid of that "elephant in the room" feeling.  Also, don't lower your standards just because you have Tourette's - you are just as mentally and intellectually  capable as anyone!

Please explain how your condition affects you. 

The main symptoms of Tourette syndrome are motor and vocal tics.  Motor tics are movements and can range from simple eye blinking to more complex patterns of movement (e.g. jerk head, throw arm out to side, and then snap fingers).  Vocal tics are sounds and they can range from simple throat clearing and coughing to repeating words and phrases.  Coprolalia (rude or obscene words), the symptom that everyone associates with Tourette's, is only present in about 10% of the Tourette population. 

For me, the hardest thing to cope with besides the self-consciousness and occasional shame, is the pain and fatigue associated with my tics.  I tic almost every minute of every day.  Many times, I am good at camouflaging my tics.  For example, I cough when I have the urge to say a phrase or word.  When walking, if I feel the need to squat, I pretend I am tying my shoe.  Some tics are hard to hide, and those are usually the most painful.  Head jerking, loud grunting, and arm flinging are especially difficult.

Because of this almost constant movement, I fatigue much quicker than other people.  By five o'clock I am usually exhausted and need to lie down for an hour, so that I am able to get through dinner and whatever else I have planned for the evening.  It took me a while to realize that I couldn't keep going all day like a "normal" person, which was a hard pill to swallow at first, because everyone with Tourette's wants to feel as "normal" as possible.  College was hard at times, because when people were just gearing up for the weekend, I was looking forward to the weekend so that I could sleep and prepare for another week.  I was always physically exhausted by Friday!  In addition to the fatigue, there is pain associated with some of my more intense tics.  To compensate, I take pain medication and get regular massages.  I also take medication specifically for the tics when they are really bad (there is no actual medication for Tourette's - doctors have to experiment with medications for other neurological/pyschiatric disorders, including epilepsy, Parkinson's, and psychotic disorder (no-I'm not psychotic ;-)   Unfortunately, these medications make me tired and I hate taking them as they put me "out" for a day or two. 

The disease has changed with time.  When I was younger, the tics were mainly motor.  I had few vocalizations and more motor tics - head jerking, squatting, snapping, eye blinking.  As I have gotten older, my motor tics have become less apparent (abdominal tensing, neck stretching) and my vocal tics have increased.  I have learned to cope with it and have come to realize that I will always need to make special accommodations so that I can be the most successful person that I can be.  This fact, however, does not diminish my value as a person and I should not feel ashamed that I need to make such accommodations. 

What are 3 things you couldn't live without?

I could never live without my animals.  They are a calming influence and do not judge me based on my odd movements or behaviors.  Having dogs also forces me to get out and exercise, which is really important for people with tics.

I could never live without my parents in my life.  They are the reason that I have done so well.  I continue to live with them at home and they are a stabilizing force in my life.  Although I plan to move out in a year, I know that they will always be supportive.  I believe that because my parents, and mother in particular, never let me use my tics as an excuse, I have come so far.  They always focused on solving the immediate problem at hand and never allowed me to wallow in self-pity or ask "why me?"

I also couldn't live without the opportunity to travel.  It is a passion of mine and I savor being able to experience a different language and culture.

What are you most proud of?

I am most proud of the fact that I never let Tourette's stand in my way of accomplishing what I wanted to accomplish.  All too often I see people who cannot seem to get past the fact that they have this chronic, embarrassing, and at times, debilitating disorder.  Maintaining a positive attitude and refusing to let Tourette's be the reason for not pursing a passion is essential.  I am proud that I got through college and am now on track to attend medical school.

Where do you get your strength?

My family, friends, co-workers, and pets!

If you could send one message to medical professionals around the world, what would it be?

Think about your treatment plan for people with Tourette's - medication can make a difference, but don't just medicate because it is the easiest way to help tics.  Emphasize the importance of maintaining a normal life, pursing hobbies, meeting people, forming relationships, and having fun!

Megan, I want to thank you for opening your heart up to us! You've given an amazing voice to an often misunderstood condition and you are truly remarkable.

I want to end this post by telling you all about an incredible documentary I saw in class the other day: HBO's Have Tourette's, But Tourette's Doesn't Have Me. Below, you can see a preview and learn about these incredible kids. I really recommend renting and viewing the entire thing - it brought me to tears and gave me a much greater understanding of the condition.

Love,

Maya

Finals Period... And Life Is Good?

I'm in the midst of [the dreaded] finals period at Columbia and, during the past week, I've written close to 60 pages! Before this coming Thursday, I'll have given a presentation, taken a final exam and handed in three 20 page papers. Needless to say, my free time has been spent doing little else besides eating, sleeping, and bathing. Ordinarily my body intensely objects to this kind of treatment: the odd hours, the decrease in movement and sleep, the high levels of stress, the energy drinks, etc. To top it off, there has been rain nearly every day in New York City which is akin to kryptonite for people with rheumatic conditions. It's safe to say that my self-care is at a low right now, but surprisingly I'm doing fine!

I'm so glad that I received my Orencia infusion last week. While I experienced the usual pain and fatigue the day after, I truly believe it's now propelling me through these tough days. I'm beyond grateful for this relief; for each deep breath that I can take; for my increase in energy and my ability to keep up. While it may not not be this good forever, I have my life back right now and all is right with the world. Once I'm out for summer break and start treating my Fibromyalgia pain, it's exciting to think I may feel even better!

Thank you for sharing in my journey and for the constant encouragement and well-wishes. I hope you're all feeling well too and, as a thank you for being loyal readers, I have some pretty awesome giveaways lined up for the next few months. Also, don't forget about the giveaway that's currently going on: You could win a gorgeous print of your choice by the talented photographer (and my friend) Jodi McKee! Entries will be accepted until 11:59 pm EST on May 2nd. Good luck!

Love,
Maya

A Medical Game Plan

First of all, I want to wish all of my readers who celebrate Easter  a very happy holiday! While I'm Jewish, I know the importance this day holds because I once celebrated with my grandma Hilde. May you all be surrounded by family, friends, laughter, food and many painted eggs today and always.

Secondly, I saw my rheumatologist (Dr. Berman) last Wednesday and mostly it was good news - the first time I've been able to say that in over a year! Overall she was very pleased with the progress I've made on Orencia and it seems I'm finally stable again. Compared to how sick I was when we first met, I must seem like an entirely different person. I'm relieved that she's getting to know the real me. This was the second time she had me fill out the BASDAI Bath Anykylosing Spondylitis Disease Activity Index, a questionnaire that asks patients to rate  their levels of pain, stiffness, and fatigue during the previous week. If you click on that link, you can take the free online questionnaire too. I'm happy that she tracks my symptoms so carefully. It makes me feel cared for and secure in my treatment.

 There is no question that my pain has subsided dramatically in just a few months (it's now anywhere from a 1-4 on the "pain scale", rather than the 7-10 from last fall). I could not be more grateful for this change. However, at this appointment Dr. Berman also definitively diagnosed me with Fibromyalgia, a disorder "characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." Researchers believe that Fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. During the "Great Flare of 2010" (ha, that has a certain ring to it...), my doctor first suggested that I might have Fibromyalgia. However, since my body was in such an overwhelming state of distress at that time, there was really no telling if the nerve pain would stick around. Unfortunately, it has.


While I'm much better overall,  I'm always sore and often feel as if I both caught the flu and ran a marathon - different pain than the pain I've grown up with. My back, hips, legs, feet, shoulders, neck, face, and hands are always in some state of discomfort and it often hurts to be touched. I can't handle any kind of massage and poor John has had to monitor his hugs for a while now. I'm someone who has always been "good with pain", but there's no question that my pain tolerance has dramatically decreased this past year. For instance, a simple blood test can now cause excruciating pain.  My doctor believes the length and severity of my last flare may have altered my nervous system...hence the Fibromyalgia diagnosis.


Currently I take a laundry list of medications, which is something I'm hoping to change soon. One of them is Zoloft - an anti-depressant I started when things were at their worst. Dr. Berman also suggested switching to a new anti-depressant called Savella, a drug proven to simultaneously treat nerve pain and depression. Two birds with one stone sounds great to me. If Savella has its intended effects, I'll be able to lessen or ideally eliminate any pain medication and anti-inflammatories I take. Apparently it's been completely "life-changing" for some of her patients! I'll keep you posted, but for now it just feels good to have a game plan.                       
                                                      Love,
                                                      Maya

Guest Post: My "Dream Catcher" Support System

My Dream Catcher Support System

By Betsy Kratoska Baker

The Lakota Tribe is just one group that incorporated into their heritage the Dream Catcher.  Their story is a little different on how the Dream Catcher came about.  Here is their version as written in the book American Indian Stories, Legends, and Other Writings (Penguin Classics) by Zitkala-Sa, Cathy N. Davidson, Ada Norris Published by: Penguin Books; (February 25, 2003).

Long ago when the world was young, an old Lakota spiritual leader was on a high mountain and had a vision.  In his vision, Iktomi, the great trickster and teacher of wisdom, appeared in the form of a spider.  Iktomi spoke to him in a sacred language that only the spiritual leaders of the Lakota could understand.

As he spoke Iktomi, the spider, took the elder's willow hoop which had feathers, horse hair, beads and offerings on it and began to spin a web.  He spoke to the elder about the cycles of life...and how we begin our lives as infants and we move on to childhood, and then to adulthood. Finally, we go to old age where we must be taken care of as infants, completing the cycle.

"But," Iktomi said as he continued to spin his web, "in each time of life there are many forces -- some good and some bad. If you listen to the good forces, they will steer you in the right direction. But if you listen to the bad forces, they will hurt you and steer you in the wrong direction."

He continued, "There are many forces and different directions that can help or interfere with the harmony of nature, and also with the Great Spirit and all of his wonderful teachings."

All the while the spider spoke, he continued to weave his web starting from the outside and working towards the center.

When Iktomi finished speaking, he gave the Lakota elder the web and said...."See, the web is a perfect circle but there is a hole in the center of the circle."

He said, "Use the web to help yourself and your people to reach your goals and make good use of your people's ideas, dreams and visions.  If you believe in the Great Spirit, the web will catch your good ideas -- and the bad ones will go through the hole."

The Lakota elder passed on his vision to his people and now the Sioux Indians use the dream catcher as the web of their life.

It is hung above their beds or in their home to sift their dreams and visions.

The good in their dreams are captured in the web of life and carried with them...but the evil in their dreams escapes through the hole in the center of the web and are no longer a part of them.

They believe that the dream catcher holds the destiny of their future.

Maya recently asked if I would ask someone in my life to participate in her new initiative, “Spotlights On Those Who Love Us.” After much thought, I realized that I have a unique support system. It consists mostly of my friends and sometimes my family when they are able to offer help.  My support system is like a safety net made up of so many loving and generous people.

It is quite different than Maya’s support system. I often find myself telling her how lucky she is to have the support she does. Her parents will come to her infusions. She describes John as the "best medicine out there" in her March post entitled "Love As A Painkiller." Her brother got a tattoo in support of her. Sometimes I long for that.

It is not my reality, but I have a different one and am learning that, mine too, is one to be proud of.  Last month, I had to have an emergency appendectomy and, while I did not have family with me as I was prepped for surgery, I had another gift. My friend’s gentle and sweet hubby came to be with me in the emergency room, reassuring me and said he would speak with his colleagues assigned to my case. When I was brought down to the operating room, there he was talking to the team, holding my hand and talking to me as I went to sleep. How beautiful! I have such a great friend that her husband came to be with me as I drifted away. Not many of us are that lucky to have an empathetic and caring doctor and friend with them as they go under, but I did. He brought me such comfort and I can't thank him enough.

This last month I realized that I do have a “village” of mothers that can and will jump in. I just need to learn to accept the help. This group is helping me achieve my dreams. Instead of thinking of my support as a safety net, I decided to view it as a dream catcher.  Instead of dwelling on specific relationships that may let me down, I have the beauty of having so many generous people woven together in my life. Not only do they catch me when I fall; they help my family achieve its dreams. Between my playgroup mommy friends, friends I've made through my children’s schools and neighbors, I've had so many offers of help. Meals were brought to my home, my children were driven to school and to their activities, and many play dates were offered. Even though their dad had to go to New York City two days after I was released from the hospital, I know my boys were cared for and loved by so many.

And yes, it hurts that I don’t receive the unconditional love and support I once expected from some people, but it hurts more to dwell on it. In this last month, I learned to be grateful for any help offered, instead of feeling let down by those I once hoped would help me unconditionally. I’m learning to accept that sometimes people can't handle your illness and can't support you. But that's okay because there are so many others woven into my support system that can. I've learned that love - not just biology - make a family. With this new outlook, I can now see the beauty in my created dream catcher family.

Although much time has past since our high school days, John Horton (who was spotlighted in this February post) has become an active part of my support system.  In this last month we have ended up having nightly Facebook chats. He reminds me that I am not alone; that we are united in our pain and understanding. John not only reminds me that I can carry on, but that giving up is not an option. He is another reed woven into my dream catcher; another silver lining. 

When I was newly diagnosed with Spondylitis, I joined the Spondylitis Association of America (SAA) and via their Facebook page, I was directed to Maya’s blog. I was instantly attracted to her writing because I felt as if I was reading my own thoughts. I was not alone and I found it so cathartic. Maya and I began a relationship outside of her blog. The common ties seemed endless—our desire to pursue masters in social work, our Jewish heritage, our travels to Ecuador, and our love of poetry and music. She has a heart and mind that I fell in love with. This past summer, I made a trip to New York City and met Maya for the first time. She is the first friend I have made exclusively online, so this was new, yet exciting territory. Upon our first real hug, I knew that our friendship was real. She is as beautiful inside and out as she came across in our communications. I think of her as one of my many silver linings to this disease.  Maya is a great friend and significant part of my support system. Spondylitis is what brought us together, but it is not what unites us; instead, it is our mutual empathy and kindness that will keep us strong. The entire A.S. online community, along with my dear Maya, complete my dream catcher.

Whether you're chronically ill or not, life rarely goes as planned. Accepting reality and making the most out of it, has led me to pursue a life of gratitude.

Thank you so much Betsy for not only opening up your heart to us, but for reminding us that there are many ways to love and to be loved. What you didn't mention is that you are an integral part of so many other dream catchers (including mine). As the Beatles once said, "and in the end the love you take is equal to the love you make..." 

Love,

Maya

The Results Are In

The other day I wrote a post about my current medical status entitled "Waiting Too Long For Answers" . I hadn't mentioned to anyone outside of my immediate family what I was truly fearing. Since I was first put on TNF Blockers at age 15, I've been acutely aware of the risks - mainly the rare but increased chance of developing a form of cancer called Lymphoma. This concern is always in the back of my mind, but I had never let it get to me until I was presenting with all the symptoms (including several swollen glands). Now you can see why waiting was so brutal.

Thank goodness there is no cancer. Instead, my blood results revealed low iron levels and extremely low Ferritin levels. In short, I'm anemic and the doctor agreed that this could explain my constant, extreme fatigue, mild hair loss, "brain fog", mouth sores, paleness, etc. Like most of us searching for a diagnosis, I was thrilled to have found the problem because that meant I could potentially solve it! My doctor prescribed iron sulfate supplements 3 times a day and, although she said it may take weeks until I truly notice a difference, I think I'm already feeling better. I'm able to make it through the day without a long nap and the intensity of my fatigue has mellowed out. I'm also finding much less hair in my shower and on my pillows! It has made me hopeful again.

There is a slight chance that some of my symptoms may be side effects from Orencia and, in that case, I may have to taper down my dose or extend the time period between infusions. The IVs have worked well to combat my pain and inflammation, but they might just be overkill for my immune system. There is also another possibility. Because I've had some stomach pain and digestive issues lately, my doctor wants me to finally get that endoscopy we've been talking about for almost 2 years. It's believed that I once had an ulcer from the overuse of NSAIDS (oops), but since the pain went away after taking daily Prilosec and modifying my diet (eating less acidic food, cutting out coffee and alcohol, etc.), we dropped the issue. However, now that the pain has resurfaced, I have to confirm that the reason for my anemia isn't another bleeding ulcer. I'm not too crazy about the idea of being under anesthesia or getting scoped, but I'm told this is an easy procedure. Has anyone had an endoscopy before? If so, what was your
experience?

This evening I'll be getting my Orencia infusion at the hospital and, although I'm in the middle of finals period, I can't skip this. It's times like these when I pat myself on the back for extending my masters program by a year. I'm confident in the doctors who are on my medical team and, while the road ahead may seem daunting at times, I need to keep my eye on the prize: finally feeling well enough to truly enjoy each day.

Love,
Maya

Win A Gorgeous Print Of Your Choice By Photographer Jodi McKee!!

I've written before about my friend Jodi, so click here to read her spotlight and learn more about this awesome woman. We met last summer after I found her blog, the Autoimmune Portrait Project (which I wrote about in this July post). I was amazed by her vision and desire to help other through art. Her talents extend far beyond portraits, as she photographs anything from lovable pets to gorgeous cityscapes; her eye is truly amazing.


Jodi has an online store on one of my very favorite websites, Etsy.com - click here to view the awesome collection. I asked if she might be interested in doing a giveaway for my blog and I was thrilled when she said yes!  Not only that, but Jodi is offering four never-before-seen prints just for my readers! If you're the winner, you'll get to choose from one of these gorgeous prints (measuring 8 X 11 inches)...

You have a chance to submit three entries and increase your odds of owning a Jodi McKee original!

For Entry #1:
Please comment on this post, specifying which of these 4 photographs you'd choose if you were to win and why.


For Entry #2:
Head on over to Facebook.com and "like" Jodi Mckee Photography on Facebook.

For Entry #3:
Please tell me what other things you might like to see as future "giveaways"!


You may enter this giveaway until 11:59 pm EST on May 2nd. and a winner will be announced the following day. Don't forget to check back to see if you've won because winners have 2 weeks to claim their prize by contacting me via e-mail (mklaub@gmail.com). To keep things fair, another drawing will take place (from the original entries) if the prize isn't claimed by this time.


Another exciting tidbit! After the winner is chosen, Jodi has graciously offered to provide my readers with a special 15% off discount code that can be entered upon checkout in her Etsy store.


Stay tuned and good luck!

Love,
Maya