My Life Changed Seemingly Overnight
I don't tell my AS story very often. It seems so long to me and I never know if anybody really wants to hear it considering there are so many other people dealing with so many worse conditions. Maybe on this site, my story will resonate with someone and help them decide to unburden too.
When I found out I had this disease I'd never heard of I had already been dealing with ulcerative colitis for almost a decade but I had that under control for the most part. I was a very busy mother of 3 kids in high school and college and I worked full time as a surgical scrub tech, complete with an on-call schedule, as my day job. When I wasn't doing that I worked as an EMT-Intermediate on our volunteer city\county rural ambulance service generally on call about 500 hours per month. Basically, if I wasn't doing surgery I was waiting for an ambulance call or training for them or helping my husband, the director of the county EMS, teach a class. I loved both my jobs so much. I kind of "fell" into both jobs at about the age of 30 so I was just settling into my stride in my early 40's when I started feeling sick and getting weaker, even passing out at work occasionally.
Then one day at work I had a gall bladder attack. Shortly after the attack, I had a laparoscopic gall bladder removal. After a two week recovery period I was going back to work. It was Sunday night and I was going back to work that Monday. I started feeling like maybe I was getting the flu.... achy and a little weak and the day I went back to work I passed out. The doctor who I'd been seeing for my UC and gall bladder surgery had his office in the hospital building and a co-worker wheeled me to it in a wheelchair where my doctor told me he thought I just had the flu and sent me home.
That was February of 2009. I couldn't seem to recover. I saw the same doctor 3 more times over the next couple of months and he told me each time that he thought I had the flu. It had been a particularly bad season for it. The last time I remember getting into the car with my husband and telling him that I didn't think this was the flu and it was time to see a different doctor. So I saw my primary physician who ran some extra blood work and found that I had a hypoactive thyroid and we spent the next 3 month's working with dosages of levothyroxin. However, once my blood work showed my dosages were right I was still weak and tired and having trouble getting up from a squatting position or bending over among other issues. My doctor had checked me for RA and lupus and some other diseases and I'd had a colonoscopy to see if it was all caused by UC but my colon was healthy. My doctor said it was time to see a rheumatologist. By the time I got to the rheumatologist I was exhausted all the time and in so much pain I could hardly walk. I couldn't drive myself. Just getting in and out of the car was so hard. So I had done a LOT of research online and I thought maybe I had this disease called ankylosing spondylitis and maybe fibromyalgia.
The first appointment I had with my rheumatologist he did more blood tests and X-rays and he told me I had both of these things in addition to severe bursitis in both hip joints. He gave me a steroid injection in each hip and started me on Humira shots and set me up with a pain specialist. My rheumatologist was and is wonderful. He told me about how AS was still generally considered a man's disease but that wasn't true. He gave me restrictions that in the end kept me from ever going back to my job in surgery again. I tried desperately to stay with the EMS at least part-time or when they needed an intermediate for transfers but, even tho everyone tried to help me with things like lifting, things like bending over patients and getting in and out of the back of the ambulance was just not doable so I lost that job, too.
The worst of losing that job was that I did a lot of it with my husband as my partner and he had to keep working lots of nights and weekends volunteering for calls after working in the office all day as the director. My youngest had been in his freshman year of college so we were empty-nesting and with another surgery of my own due to an adrenal gland mass AND the passing of both my father and my beloved step-father all while living in a small town an hour from any of my friends or relatives, I became alone and isolated for a significant part of nearly every day. Having fought depression off and on most of my life it was the perfect storm for me to plunge into a deep dark depression where, if I got out of bed at all, I would sit in a recliner in a dark room with nothing on.. .total silence... until my husband would be home and even then we just drifted further apart not having anything to talk to each other about. That went on for approximately 3 years during which time I began seeing a therapist. By the time I started those sessions I was having auditory hallucinations and was close to a psychotic break. I found out that, not only was I suffering from depression, I had been dealing with having undiagnosed bipolar disorder for decades.
With the help of the right medications and the adoption of my life-saving K-9 savior I was finally able to function in a more normal way but I almost lost my husband and my life before I was able to deal with all of the loss that hit me like a tsunami of grief. It's been a decade since my diagnosis and subsequent disability. I still struggle with mental illness and see a therapist but I am functioning normally most of the time. Thanks to my wonderful team of doctors, every 6-week remicade infusions and too many other medications, my physical illnesses are under control for the most part. My husband and I managed, thru hard work and tenacity, to stay together. It has not been easy or speedy in that recovery either but it HAS been worth all of the broken nails from digging in and holding on.
On the days I feel "good" I fill my time with reading, Facebook and computer games in addition to the housework I can manage. The biggest positive to come of my disability is that, now that my children are providing me with beautiful grandchildren, I can go out of state to visit them as often as my bank account will allow me to fly and as long as they, my husband and my dog will allow me to stay. I keep my fingers and toes crossed that my health will continue to let me enjoy those things in life that have taken the place of what I used to love and I remind myself often of the things I am ABLE to do and how lucky I was to have had nearly 15 years of, not one, but TWO jobs I dearly loved and those wonderful people I worked alongside who have contributed to my memories of that time. I'm finally looking forward to the time I have left on this planet doing the things I am able to do.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?