This little note is about me and my journey with AS- also known as Ankylosing spondylitis.
I am writing this for my friends who suffer like I do. I think about you everyday. My heart breaks for your freedom from the constant pain and limitations-and then I rejoice for those who have found relief and can live their lives well. It’s a hidden disease for most of us- because on the outside no one can see what horrific pain is happening on the inside- years and pain make us adapt to it- in a way- we can sit there and smile ( most of the time ) through the kind of pain that make some people cry for narcotics….
I made an agreement with myself- to never seek sympathy or talk about AS too much- or tell people that it limits what I do or should do because I refuse to give it more time and thought anymore. It’s taken enough of me over the past 10 years.
It all began with iritis. I was 36 and preganant with my third child. The eye doctor told me I had systemic arthritis. “Are you nuts?” was my first thought. “Me?”
Okay so I was always healthy and very active- I taught aerobics and I ran- long distance- I was always moving and never had any trouble with my joints. Only now looking back when I was 14 or so- I had the occasional pain in my right wrist which I would wrap and then it would go away- nothing to worry about. Then when I was 23, teaching school and being in high heels all day- my lower back would just throb- but again- nothing uncommon I thought….
After the eye doctor I did nothing but birth my baby and live as young mothers do with young children- I was busy.Then I got an annoying ache in my right hip- like a bad kink that wouldn’t go away. The iritis flared up now and then but a few Advil and it was gone and I haven’t had it since. I was working out at the gym and still running but the kink got worse. I got mad at it. I ignored it. I made that hip do more than it would have to without the kink.
The pain settled into my right SI joint for the next few years. I experienced a year of severe inflammation in my rib cage area- / breastbone- but that along with iritis has never returned to this day.I still didn’t have a doctor- I went to emergency a few times because the pain was so bad I thought it should be examined- I was asked what I was doing to injure myself and nothing was diagnosed. This went on for 5 years. I was still working out and making my hip do extra things. I was still mad with it.
At the end of that 5th year the pain was so bad that for two weeks I could not walk. Still no diagnosis, except my sister who is a nurse informed me that our Dad had something called Marie Strumpell disease. Well I never knew this! I lived with the man and he was fine- a bit stiff but never complained of anything like what I was suffering from. He could tie his shoes- I couldn’t. Hmmmm.
I landed in emergency one night at the hospital. I couldn’t stop crying- the pain was so bad that if I moved ever so slightly- any part of me- the worst muscle spasm you can imagine tore through my body and lasted for at least a minute
This had been going on for a week or more- I was bed ridden. My husband at the time had to take time off of his work to care for me. I was told that I may have something called AS- but there had to be a specific blood tests to verify it. It came back postitve and I was already in the know about it-
At first I was sad, scared and then mad. I had no idea how this would affect my life and my lifestyle- I wasn’t willing to give up being acrive or happy. How I kept both to this day required faith and perserverence and a lot of optimism!
I started with taking Bextra and then Celebrex and then Tylenol 3’s…. I never believed pills were healthy- I hated taking them and somewhere deep inside I didn’t believe they were helping or doing any good period. So I stopped going to a doctor and I started being my own doctor. I began to eat differently and exercise as much as I could without killing myself. If it hurt when I walked- I walked more. When I tried to run and it hurt I told the pain to frig off and I ran anyway. I treated the pain like an unwelcomed theif, not a guest I was going to be a hostess to. Ever since I got that attitude, AS has not ruled my life and I am no longer angry, sad or limited. The way I see it is like this: I am in charge of my body and what I believe and how I think will rule it- no pain or so called disease will easily dominate me if at all. God has blessed me with His healing Word which I fully believe in. That is what I stay focused on. Sometimes when I stoop it looks obvious that I cannot bend like normal people do but that’s about it. It’s really quite amazing how I have learned to adapt inorder to move so that I won’t hurt myself- I use my legs and arms a whole lot more and I still lift really heavy things. I am not on any medication with the exception of extra strength Advil a few times a month to sleep. When I was examined by my rheumologist several years ago he told me that he was surprised that I didn’t have any fusion in my spine and was that I was able to live without medications. I told him that Jesus is my strength and my healer- and he thought it was just because Im female! At the risk of sounding “religious” I spoke the truth anyway.
10 years later which brings me to the present time- I live an active life and still am able to go to the gym and am not limited to what I can do.
Being diagnosed with AS is not the end- it’s the beginning of you seeing a life within you that is stronger than you knew.