My AS story begins 30 years ago at the age of 10. My knee was the first to flare up and the biggest problem I faced for the next 6 years. My neck/back involvement originated at age 16 following a car accident in which I suffered whiplash. So began the physical therapy visits that would continue on and off for years to come. Yet I never recovered from my injury.
When I was 18, my orthopedist decided knee surgery was my best option so he completed a lateral release – a procedure my rheumatologist believes made my problem worse. All the while, my neck pain and stiffness were increasing and severely limiting my range of motion.
My first year in college, I found it difficult to sit through classes because I was having pain and discomfort in my rib cage. It was bothersome to the point where I was skipping class because I was too uncomfortable. I visited my GP who was smart and caring enough to send me to a rheumatologist for a consult.
X-rays on my first rheumy visit confirmed c-spine fusion. Blood test confirmed I was positive for HLA-B27. I was a female diagnosed with AS in 1991 at the age of 19. At the time, I had no idea the ramifications of this diagnosis and was blissfully unaware of the complications that could confront me in the future. Or my family – some of whom have since been stricken with the same horrible fate. My father and sister were both diagnosed with spondylitis. My aunt shows signs. A distant cousin. What about the next generation?
Over the past 20 years, I’ve had more steroid injections than I can remember. Fluid drained too many times from too many places. More therapy. Another knee surgery. X-rays. MRIs. My sacroiliac joints are gone. I have bone spurs on my hips. Costochondritis. A rotator cuff tear. Achilles tendonitis. Low back pain. Constant neck pain (who says fusing makes the pain go away?!). Swelling in my elbows, hands, knees, eyes. Did I mention the incredible fatigue??? The intermittent nausea??? Depression??? Anxiety???
I’ve also been on more medications than I can remember. NSAIDs. COX-2 inhibitors. Biologics. Chemo-drugs?!? Steroids. Opiates. By far, Enbrel worked best of all. I was an early-adopter of the drug and took it successfully for many years. Remicade/methotrexate didn’t work for me, but Enbrel was magical stuff – until the recurring infections began.
My immune system got to the point where after just two injections I ended up with a respiratory infection that would knock me out for at least a week. Not just a cold, but a full blown knock-you-on-your-butt infection. Once I recovered and restarted injections, the next infection would set in. It was a vicious cycle that I had to break by discontinuing Enbrel. While working 50+ hours a week was incredibly difficult in pain, it was not possible if I was too sick to get out of bed. I can usually push myself through the pain and the fatigue – though some days I’m not sure how.
After 30 years of living with this disease, I’ve learned a few things.
- I’m always sure to sit on the “right” side of someone to carry on a normal conversation since I can’t turn my head to the left. I also can’t easily look at the sky nor at times see my feet. But hey, if I can’t see/touch my feet, that just means I’m entitled to more pedicures, right?
- Checking my blind spots while driving is almost impossible. Good mirrors strategically placed are a godsend. So are backup cameras!
- If I don’t sit with my spine straight, my neck will become “stuck” in a forward flexed position that is difficult to get out of and makes swallowing without choking almost impossible.
- Fashionable shoes take a backseat to comfortable ones when I’m hurting.
- Good music at loud volumes can be incredibly therapeutic. The harder the better. Ozzy anyone? Metallica? Pantera? Just no headbanging – that’s counterproductive…
- Yoga helps! Take a class geared towards people with back problems.
- A great mattress and supportive pillow are worth their weight in gold. While highly unlikely to make you pain free during the night, they will certainly allow you to sleep more than you otherwise might (so does taking Vicodin before bed!). Pillows between your knees and arms are helpful as well. Forget about sleeping on your stomach if your neck is fused – you can’t breathe with your face buried in the mattress!
- I no longer describe AS as “spinal arthritis” because people do not take it seriously. Many are quick to counter with their own “back” problems that are certainly worse than mine. For some they are. But for most – I doubt it. I can handle lots of things but ignorance isn’t one of them. (Speaking of ignorance, I once had a doctor laugh at me when I told him I have AS. He then asked who diagnosed me and quickly changed his tune when I gave him my rheumy’s name.)
- That which does not kill you WILL make you stronger. Most people don’t realize how strong I am – but I do. And I remind myself all the time when I feel lousy. So does my incredibly supportive husband.
- There is no greater gift than the love of your family. My son and husband truly keep me going. Even when I feel absolutely miserable, they can still make me smile.
- Enjoy the “good” days because sometimes they are few and far between.
- I may not beat AS, but it definitely won’t beat me.
I am fearful of what the future holds. I was stable for many years, but my condition is certainly deteriorating. I worry about supporting my family, finding health insurance if I ultimately end up on permanent disability (which I will fight with everything I have in me!), being mobile enough to travel to places I’ve always wanted to see, growing old enough to meet my grandchildren and so much more.
Some days I become overwhelmed. I can’t remember what it’s like to live without daily pain! But most days I am able to remind myself that I am much luckier than a lot of people. I will rise to this challenge as I always have. This is my life, and I choose to live it to the fullest.
Maryland, United States of America