At the ripe old age of 38, I was a mom, a teacher, a sister, a mother, and a friend. I loved everything about teaching. It was something that came naturally to me. It didn’t matter if it was a corporate training session for new computer systems, trade school speech classes, or online math courses. I loved it so much, that it wasn’t unusual for me to work 60+ hours a week. Walking away from all of that was the hardest thing I’ve had to do in my life. 2008 was the year I could no longer keep up with the life I’d created for myself.
Let’s start at the beginning. I was one of those kids that got sick all of the time. If someone on the other side of the room had a cough, I’d have bronchitis within a week. Their sore throats would be my strep throat. I have been sick most of my life. It didn’t get better when I got older. My twenties were spent fighting an uphill battle against Ulcerative Colitis. In 2003, I lost that battle, and had to make peace with losing my colon at age 33. The problem didn’t end there. I woke up from a colectomy to unbelievable sciatic pain. The nurses and doctors chalked it up to going through a dozen hours of major surgery.
It took 3 years and 3 doctors to finally diagnose the A.S. I didn’t know what it was, or the impact it would have on the rest of my life. We started the treatment roller coaster right away. NSAIDS, Methotrexate, Sulfasalazine, Pain Clinics, Massage, Acupuncture, Acupressure, Stretching, and Exercising – nothing brought any long-term relief. Unfortunately, it looked like I’d have the same struggles that I had with Colitis – no remission.
In 2007, I found what I thought would be the miracle drug; HUMIRA! By month 4, I was feeling fantastic! I was walking without a cane or walker for the first time in a long time. I had energy at work, and was ready to proclaim VICTORY! Unfortunately, the celebration was short lived. One side-effect of wonder biologic drugs is a sketchy immune system. By mid-2008, I had a nasty case of pneumonia. I stopped Humira, and focused on working while fighting this lung infection. Three rounds of antibiotics, and it was still there. Breathing became more difficult, and my energy waned.
September rolled around, and I was still was unable to shake the pneumonia. The doctor suggested I take a break from work and focus full time on getting my health back on track. It took 6 months more to shake the infection. By then, all of the Humira was out of my system, and the disease had been ravaging my body. Joints were fusing, and connective tissue swelling. Some of my organ walls were thickening and hardening. It was becoming clear that the disease was not going to be slowed in the short term. The doctor suggested permanent disability, and I grudgingly agreed.
Since then, I’ve struggled with iritis, uveitis, costocondritis, and many other lesser known issues that come along with active AS. Not working has afforded me the ability to take each day as it comes. I’m no longer pushing so hard. I don’t get sick as often, but I still have a sensitive immune system. The disease has progressed further than I ever thought it could, but I refuse to give up. On good days, I volunteer and blog (http://musingsfromthebubble.wordpress.com/). On challenging days, I give my body time to rest.
I know in my heart that I will one day see a remission!
Oregon, United States of America