Long and Winding Road

I think my personal story with Ankylosing Spondylitis is a lot like that long and winding road. In retrospect I’d say I started having back pains when I was 16 or 17 years old. I remember a time in high school gym when my hips hurt so much I couldn’t run the relays we were supposed to be running. I sat it out and when I felt better the next day I didn’t say anything. I do distinctly remember one of my classmates repeatedly telling me that I walked funny. It was high school. It was the 80’s. We all looked, sounded or walked funny. That’s the definition of high school!

Our first clue that there was something more serious than growing pains came my senior year in high school. I got what everyone thought to be pink eye. After weeks on antibiotics the doctors at the Air Force base clinic started checking for other causes for the redness, pain and headaches. In looking into my eye the doctor informed me that the inside of my eye looked like a dirty fish tank and that I had what was called Iritis. The military doctors were very pleasant but also very perplexed as to why this young seemingly health woman was in with inflammation in her eye. I believe, although I do not recall, that they tested me for every reason they could think of at the time to figure out why I was running around looking through this dirty fish tank.

The answer to the mystery came my freshman year in college. Before I tell the story of my diagnosis you should probably know a little about me. I’m the youngest of four, African American who comes from a big extended family where I am one of about 50 something grand kids and my father was career military so I’m an Air Force Brat. I don’t know if it is one or all of these facts that directly relates to the fact that in life I have learned to adjust and accommodate with little fuss. With so many others around and with the strict rules of being a military brat you learn to get in where you fit in and to make it work. So apparently, I adjusted and accommodated for some discomfort and/or pain for years without realizing that was what I had done. When I returned home from college, at semester break my Dad told my Mom to take me to the doctor to see why I was walking funny. The military doctors took x-rays, ran tests and quickly returned with a diagnosis and a report that I had hips of an 80 year old.  Almost thirty years later I don’t remember a lot about those doctors but I can tell you two things. One I’m glad that they were interested in solving my mystery quickly and accurately and I am grateful that they spoke in terms I could clearly understand at 17 and 18 years old.

I’ll be turning 45 years old on my upcoming birthday. In the time between 17 years old and 45, I’ve had various highs and lows. I had both hips replaced in the late eighties. Oddly enough they are still going strong. My left shoulder fused in the mid-nineties but I’m not particularly interested in more surgeries. I have moderate damage to my left knee and have fused in a whole host of other joints some more important to stable walking than others. I started on the TNFa blockers almost 10 years ago before Remicade was even approved for AS. This of course, for me was some time after suffering damage and fusion that is not reversible. I’m currently on Simponi with moderate results and experiencing serious concerns about the fusing of the joints in my neck. Over the years I have experienced almost all of the possible symptoms of AS from joint fusion to inflammation in my eyes and intestines and issues with psoriasis. It’s all a pain but the medicine helps some and my crazy hectic, stressful schedule makes it all a bit worse. Yet, I maintain some sort of normalcy by maintaining a crazy, hectic, stressful work schedule.

I have had some absolutely wonderful doctors and a whole host of doctors without a simple clue as to what they are talking about. I find that I am best with a doctor I can work with to determine my best care. The ones that dictate and try to experiment with my health are replaced quickly. I still run into doctors who do not believe that I have AS because I’m African American and female. They often sit and or speak in a condescending manner as if either I’m making it up or as if every doctor I’ve ever spoken to before them is wrong. They do this for about 10 minutes until they actually read my history, look at my x-rays or talk to me about the family history I have of AS. In my immediate family three of the four of us have AS related problems. My Mother has had AS problems since her mid-twenties and my Great-Aunt used to tell me stories of how she remembers being in so much pain that she had to crawl around the house as a teenager.

Currently, I work in efforts to make this world a little bit of a better place for people with various disabilities. I have found in life we all have something. I have friends with severe disabilities such as Muscular Dystrophy, Cerebral Palsy and Spinal Cord Injuries. I have worked with people with every mental health diagnosis from minor adjustment disorders to major psychiatric disabilities. I have met people whose lives would be better off if they could disconnect from highly destructive and or abusive relationships. I have worked with people with addictions and people who have to deal with the addictions of family members and loved ones. I’ve met folks who have never had any connection to their family of origin and find themselves navigating this world on their own. I know people who are either unmotivated or simply unable to be an active participant in their own lives. Between travels, work and just life in general I have had the pleasure of meeting people from all walks of life and the one thing I truly know is that we all have something. That’s why I really like the quote that we all should play the hand we are dealt and play it to the best of our ability because the rest is irrelevant. AS is my something. AS was included in my deck of cards. While I have few card playing skills I’m pretty good at bluffing and talking trash so in the end I expect that I’ll win this hand sooner or later.


*Today's blog was also submitted as part of a contest to raise Ankylosing #Spondylitis awareness leading toward #WorldASDay. Details can be found here: http://bit.ly/icYcx5