My Story: Time to Take Control
I live in rural Alabama. Not the easiest place to find a rheumatologist, there are only 3 within 30 minutes of where I live. I was diagnosed with AS in my early 20’s. After being told I was supposed to hurt because I worked on my feet all day. They obviously were clueless as to the amount of pain I was truly in, so I went in search of a second opinion.
Receiving a diagnosis. Finally.
During this time, I had an uncle that was newly diagnosed. He told me what to tell the dr to check for. Finally, I had a diagnosis. Shortly after this, my twin sister was also diagnosed. I have since had another uncle and an aunt diagnosed. The first med I was in was prednisone, for 3 months I believe, then I was changed to Vioxx! I loved this med, it worked! My pain was gone, then comes the FDA... They pulled Vioxx off the market due to dangerous side effects. Welcome back pain! When Celebrex was introduced, it didn’t work for me.
Then I tried otc Aleve... it helped more than anything else. Kept the pain at bay mostly for the next 15 years. I had a pretty active job, lost a lot of weight, was able to move around fairly easily with only maybe 2 flares a year. They would put me out of work for a week at a time usually. I could live with that, just used my vacation time for sick time.
Then came a job change to a sedentary desk job (which I like a lot). Weight gain happened, pain sneaked back in until one day I realized I was in a constant state of inflammation. My whole hurt body inside and out. So I went to my dr and told ‘em what was going on. I got the run around (even though I already had a diagnosis). I had never been to a rheumatologist. My dr wouldn’t refer me, so it was time for a dr change once again. I found a dr that agreed that I needed to see a rheumatologist and sent a referral.
Almost a year later I finally got in to see the rheumy. By this time I had a very hard time getting up and down, standing, sitting, sometimes breathing... I became a homebody because I was exhausted all the time. Like, couldn’t keep my eyes open sometimes. I’m not sure how I kept working full time except for the strength of God.
Finally, my dr appointment. I was so nervous, my anxiety was up and so was my blood pressure. But after bloodwork, Xrays, lots of talking and physical exam, along comes a couple of tier 1 meds that didn’t really help much, then Humira enters the picture and it’s a game changer.
After the initial dose, I was on my way to a lot less pain, for the majority of 2 years. About 6 months ago I started having breakthrough sciatica and other pain. And migraine headaches, which I still have. So we discussed and decided to change meds To Cosentyx and I’m still in the loading dose phase of the first 5 weeks. It seems to be helping tho. So again no sciatica (which I’m eternally grateful for).
It’s time for me to take control
I’ve also begun a journey of living a healthy lifestyle beginning with changing what and how much I eat. I’ve successfully lost 16 lbs in 3 weeks. I was also (within the last 6 months) diagnosed with extremely high A1C and out on meds for that. I also am on meds for extremely high triglycerides, and I was diagnosed with fatty liver... hence the reason for a lifestyle change.
It’s time for me to take control of any part of my health that I can and make the most out of this life that God has given me! I will succeed because not succeeding is not an option.
Do you use the word disability to describe your AS?