What do I have in common with retired Major League Baseball player Rico Brogna and Golf Legend Ian Woosnam? It sure isn’t the ability to hit a small white ball with any sense of accuracy. No – it’s something a bit worse.
We all have Ankylosing Spondylitis. Big words that sound scary. I just found out I have it two weeks ago. The good thing is that it’s not a fatal disease. It can be very life changing though. For a detailed description here is the link to the Wikipedia page (http://en.wikipedia.org/wiki/Ankylosing_spondylitis). There are also a lot of detailed videos on You Tube.
Actually I learned a lot by watching the You Tube videos. It was nice to see other people who have Ankylosing Spondylitis talk about what they have gone through in their lives and see how similar my life has mirrored theirs.
Basically, Ankylosing Spondylitis is from the Arthritis group of diseases. It is an inflammatory disease that fuses your spine together. It affects the spine, the neck and the sacroiliac joints (your hips) the most.
For about a year or so I have lost the ability to look up. I cannot move my neck backwards to look up. There goes my bird watching career.
However, I have suffered pain in my lower back and hips for approximately the past 10 years. There are days when I cannot get out of bed, or off a seat without the use of a cane. There are days I cannot walk 2 feet without severe pain. Walking 100 feet is often the most I can go before I need to sit down. I do what I have to do to get where I need to get and count down the minutes to getting my hands on some pain relief…usually a couple of Extra Strength Tylenol…but in rare cases a couple of Percocets.
I learned from my mother, who suffered great pains in her life, to never let the pain stop you. It might slow you down from time to time, but you can always push through. Are there things now that I don’t do that I used to – sure lots of it, but I still try to have the best quality of life that I can.
The hardest part, before this diagnosis, is that for the last 10 years it has often been hard to tell my kids that I couldn’t go out and play catch with them, or play soccer or if we played basketball and I missed the rebound that I needed one of them to get the ball for me. I would never cry on the outside, but I often cried on the inside knowing how much I have missed out on enjoying the simplest things with my kids.
I used to think that the pain was caused from me being overweight. Now don’t get me wrong – I’m sure the extra pounds haven’t helped my situation, but I feel relief that there was almost nothing I could have done to stop the inflammation that has slowed me down.
One thing about Ankylosing Spondylitis is that it is usually diagnosed 6+ years after someone actually first suffers from the disease. In most cases the patient presents with back pain, or even a disease called Iritis. Iritis is an inflammation behind the eyeball. It often looks like Pink Eye but there is a much more painful throbbing that occurs. Iritis is also a sign that arthritis could be setting in.
I remember being diagnosed with Iritis. It was about 10 to 12 years ago. My doctor at the time sent me for x-rays looking for signs of arthritis but it had not set it at this point. However my back pain started increasing. My doctor, like most doctors, gave me some anti-inflammatory pills and some pain killers. Since the pain came and went and was not chronic we only treated it when the pain got really bad. I’d say that was two to three times a year.
Recently a cousin of mine who is an Emergency Room doctor noticed my neck stiffness. He told me to get it checked out. I finally had another reason to see my family doctor so while I was there I mentioned what my cousin said and my doctor agreed that I could have Ankylosing Spondylitis. I went for a series of x-rays and this time the arthritis was quite prevalent.
Next step is to see a spine specialist and a rheumatologist to find out what the next step in treatment will be. From my research on the internet there are a lot of drugs that can treat the disease and help it from getting worse. However there is no current cure to reverse the damage that has already been done.
It is sort of a double edged sword. I hate the fact that I have this disease but on the other hand I am really relieved to know what has been behind ten years of aches and pains. Knowing the cause is a big step towards a bit of peace of mind when I’m feeling unable to get along with my day…and knowing that no matter what I do I can’t make it worse.
I posted that on Sept 17, 2012. I somehow stumbled upon Rick P’s blog – and that lead me here. I am amazed at how much our stories (the AS community) are all alike. Quite eye opening.
I will add that shortly after writing this my rheumatologist got me on Simponi…and it has changed my life. I’m no longer in chronic pain 24/7. Still have soreness in my shoulders (it is my neck that is fused, not my SI joints) and I’m also one of the 10% that is gene negative. The pain is still with me – but at least I don’t move like a 95 year old man anymore.
Much luck with the success of this fight.
Toronto, Ontario, Canada