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The Birth of United Voices for Ankylosing Spondylitis

By | Experience, General | 7 Comments

WHAT? That is what I have? Really? Those were the first thoughts that went through my head when my Rheumatologist gave me the diagnosis.  What does this mean for my future?  I am young. I can’t possibly have an arthritic condition, but I do, I have Ankylosing Spondylitis.  I had never even heard of this crazy unpronounceable word and now I was diagnosed with it.

Like many AS patients, I have the genetic marker HLA-B27.  My doctor said he could tell by my “personality” almost instantly that I most likely had the gene.  I am strong-willed, short-fused at times, a bit of OCD-like tendencies and quite the perfectionist.  I try to take on the world and really hate being told no or I “can’t” do something.  Those words only make me push harder to prove others wrong.  I now feel I can admit this since AS patients often have some of these traits and I feel “normal” because of it. As I sat in the office, my doctor was explaining the disease but I could hear no words.  I was kind of in shock.  I had never been relieved and scared all in one moment.  Yes, I said relieved.  It answered years of frustrating visits to different doctors being told these symptoms must be in my head.  They don’t relate to each other, they don’t make sense, I don’t “look” sick.  I almost started believing them.  Maybe they were right, maybe I was a little off my rocker.  Within a 5 minute visit to a Rheumy I was given a sense of peace, reassurance that these symptoms were real.  I had never been so thankful for something in my life.  A diagnosis that could try to control me definitely scared the crap out of me but gave me a reason to never doubt myself again.

Now what do I do?  How can I live “with” AS not “for”it?  I wanted to stop it in its tracks.  I was going to be a new case where it just goes away or so I hoped, unrealistic, but as I mentioned I really don’t like being told, I can’t.  I knew I was going to have to learn to slow down a bit and allow the laundry to wait a day, the groceries to last a little longer, teach the kids to help around the house a bit more and limit my all day excursions to only a few hours.  Rest was going to have to become a daily habit.  This was not me.  I was constantly on the go and I liked it that way no matter how exhausted it made me.

My hope for United Voices for Ankylosing Spondylitis

My hope is exactly that, hope.  Hope that patients find comfort and reassurance that they are not alone.  Hope that together, spreading awareness of the disease will educate others to help them understand what AS patients go through.  One of the hardest things at the beginning for me (and sometimes still to this day), was a feeling of loneliness.  I felt nobody got me.  As if I were always complaining or Debbie-downer and that was not normally me but I just didn’t have the energy to fight it. On the “bad” days waking up was even a chore. Trying to get out of bed after a night of restless sleep due to the horrible pain that even the pain medicines couldn’t fix.  I try to stay positive and live by the saying “God only gives problems to people that can handle them”, but as most AS patients know, on those “bad” days, it is really, really hard to keep that smile. The more people I met through online AS groups, in the infusion room and with each visit to the Rheumatologist I found that my complaints were not uncommon.  There were tons out there just as uncomfortable as me. Before meeting fellow AS’ers I was afraid to vent, as if I was doing something wrong. I decided that I may only be one person but by creating UVAS I can bring patients, their family and friends together to find the courage to share their experiences to help others.  I don’t think that the people I have met with AS realize how much they have helped me.  I have learned so much from them just by talking with them.  I am no professional but I do believe it is important to share experience with others.  Every little bit helps.  I constantly tell my children that it is important to learn something new daily, even if it is something small.  A day without new information is a wasted day in my eyes.  If I can help spread awareness to others than I feel I have accomplished my personal goal of UVAS.  Please find the courage to share your experience with us and help spread awareness.

The Disease – Ankylosing Spondylitis

For those new to this disease here is a bit of basic information. Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. The inflammation can cause the spine to fuse in a fixed, immobile position, lovingly nicknamed bamboo spine.

AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved and rarely, the lungs and heart can be affected.  In the end, for me at least, AS is pain that brings you to the point of trying anything to have some relief and feel better for longer than a day.