Changing Seasons: Transitioning to Life with Chronic Disease

Three years ago today, September 22, 2010, I received my official AS diagnosis. I had a 'probable' diagnosis a few months before that from my primary doctor. But it was 9/22/10 that I spent two solid hours with a rheumatologist and heard the words "I am diagnosing you with Ankylosing Spondylitis." It wasn't a shock. If anything, on that day, I just felt relief. That may sound strange -- to be relieved to hear confirmation that you have a life-changing disease -- but I've heard the same sentiment expressed by many others with chronic diseases. The unknowns are hard. It's nice to just know.

It was chilly enough last night to slip on my flannel penguin pajamas, a pair I don't wear during the summer because they're too warm. I went to bed with it Summer and woke up to Fall.

That's a bit how life felt when I developed this genetic, chronic inflammatory disease that attacks the spine and joints, and can also pounce on eyes and internal organs, cause fevers and pronounced fatigue.

Life, unencroached upon by chronic disease, is somewhat like Summer. The weather's more predictable, you can get out more, you don't get 'rained in' by symptoms that weren't forecasted. You don't need as much gear to brave the elements.

But just like fall, with its rainy days by the fire and long crisp nights to go on hayrides and watch football games and go for walks in the crunchy, colorful leaves, life with chronic illness can hold beauty. It may be a different beauty than pre-diagnosis "summer" beauty, but it's beauty just the same.

Adjusting to life with a chronic disease can throw you for a loop. People grapple with depression, reinventing themselves, doubts and fear about their futures, and even, at times, despair. In my three years of being an official "Spondy", I've personally known of three others who have died at a young age: two to AS-related organ complications, and one to suicide.

I guarantee that unless you have such a disease or are very close to someone living with one, you don't know the half of what life is like post-diagnosis.

Being a "fall" kind of person to begin with (someone who enjoys writing, reading, and a more indoor, home-based lifestyle), perhaps I'm better suited for this type of diagnosis. I think of people who love being outdoors and pushing the adrenaline envelope, and I'm truly grateful that no part of my essential self is tied to activities I can no longer pursue. If one may end up in a wheelchair, using a cane, or undergoing hip replacement surgery, wouldn't it be better for a writer than a racer?

Seasons change. My life is altered by chronic disease. I'm still learning and growing as a person living with AS.

Stand tall and walk on, even if you have to limp. Life goes on and it is beautiful, even with its storms.

Diagnosis: Confirmed

I've been waiting for months to see the Rheumatologist, and finally, yesterday was the day. I was incredibly nervous and anxious. I just wanted a diagnosis, some answers as to why I've been so tired, feverish, stiff and in pain.

I was suspecting Ankylosing Spondylitis, which is a chronic inflammatory condition which attacks the joints, but can also effect many other parts of the body. It is an autoimmune disorder. In the United States it effects only about 0.5-1% of the population. It is similar in a lot of ways to Rheumatoid Arthritis, but RA generally effects the small joints of the hands and feet, and Ankylosing Spondylitis, AS, generally effects the large joints, such as spine, hips, neck & shoulders.

So 2:30 p.m. finally arrived on 9/22/10. Finally. I limped into the exam room.

My appointment was 2+ hours long. And at the end of it, the doctor confirmed the diagnosis I was expecting: Ankylosing Spondylitis.

I feel relieved and validated to finally know what's going on. I feel hopeful that we will find a treatment or combination of treatments that will improve my current quality of life. I feel concerned about the possibilities for the future. Possibilities like not being able to walk, needing a wheelchair or cane, having my joints fuse and losing range of motion.

But overall I feel relieved, because now we know for sure, and we can start trying treatments.

My wish is that by Christmas I'll feel much better.