About a year after my lover/husband and I married I came down with what the doctors thought was strep throat (for which I was treated). FYI: We lived in KY at the time inLouisville. I continued to get worse, breaking out in a rash, had a sed rate of 90. A sed rate is one measurement of inflammation in the body. For a female it should be 29mm per hour while mine was 90. I was put on prednisone (which I’ll never take again) and the tests continued. Eventually, I got so bad, they put in the hospital, running loads of tests and gradually taking me off the steroids. I had a echocardiogram which showed my heart murmur (which I knew I had), an irregular heart beat (which to his day continues to bother me off and on) and a nonspecific heart problem; meaning that the doctors saw that my heart wasn’t ‘acting right’ but had no idea why. Turns out it’s probably AS related. I also have a slightly crooked back and RA.
I was subjected to a total bone scan, loads of blood tests, x-rays, other tests etc. What the doctors discovered besides the heart issues was that I had a HLA-B27 antigen and it was active (from my sickness) causing the AS.
When I saw a well trusted doctor here in GA bringing all my tests results, she looked at my mama and simply said “She should be dead.”. Turns out I had rheumatic fever NOT strep throat and it broke down my immune system casing many of the other problems. I won’t bore you w/all the hardships and pain it took to recover, but will tell you it took a year to do get back to semi normal.
I already have some fusing in my back. I can’t be in any one position for very long, insomnia, extreme fatigue and pain are constants. My left foot continues to give me problems with pain and inflammation (inflamed tendons). I often have to wear a brace on my right hand where I tore a ligament and have had inflamed tendons.
Last August, I had five organs inflamed (colon, kidney, bladder, pancreas and gall bladder) with three (colon, kidney and bladder) infected as well. I have never been so sick in all my life and the realities of AS and the prospect of dying from AS have never been so much in the forefront of my thoughts.
Two of our sons also suffer with AS.
HOWEVER, I’ve decided that I would not allow AS to control my life. Nine years ago, I quit karate (as a first gup—the belt before black) becauseI knew that was what Father God wanted me to do. Back then, it was a tad easier to do karate even though I was NOT allowed to spar.
In the ‘interim’, my lover husband had encephalitis and suffers many residuals as a result. I won’t bother to tell you all the travesties and results of that.
Last February, Father God once again gave the gift of being able to take karate. The ‘rules’ b/c of AS have changed and I have more limitations now. Fortunately, I have a very understanding Sensei. I walk (not run), I do windmills instead of jumping jacks, regular kicks instead of jump kicks, wall push-ups and never spar. Though I have ‘followed through’ with some self defense techniques just to make sure I could do them (including throwing men down) I paid for them dearly for a long time. Next week, we’ll break boards, though I’ll only break mine using side and back kicks.
Workouts are so very hard and there are many days, I can barely walk due to pain, stiffness and inflammation. It is never easy and there are many days, I would rather not go—rather not put my body though a workout I know is going to leave me with even more pain and inflammation. Yet, I’m determined to continue on and have already spoken to my Sensei about starting a class just for those w/limitations once I receive my black belt. I want others with MS, Parkinson’s, Arthritis, AS, Cerebral Palsy, Chronic Fatigue Syndrome, etc, to know that if I can make black belt then so can they—even it takes longer than normal and even if the workouts take everything they have to give at the moment. I want them to feel the empowerment and pride of accomplishing what seems impossible. I want them to experience how stretching and exercise can improve their lifestyle.
I was and am so inspired by the AS groups I’ve found on facebook. Until I found others to share their story, advice, etc, I felt so alone. Now, I know that I don’t suffer alone—that there are many ‘out there’ who understand and who will encourage me.
Today, I choose to focus on what I can do, rather than what I can’t do; how I can help others, rather than how they can help me, joy rather than sorrow, gains rather than losses, and Father God and others rather than myself as much as it is in me to do so.
I have AS; it doesn’t have me.
North Georgia United States of America