Personal Story – Lisa Russouw

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.

 

2 comments for “Personal Story – Lisa Russouw

  1. Chris DeWeese
    March 7, 2011 at 3:39 pm

    What an awesome story. It sounds a lot like me. I was told I had A.S. in Jan. 2010 and have been trying to find the right medicaiton to help. I’m on Humira now along with muscle relaxers due to the spasms in my back and left leg. I have A.S. on my mind every second of every day. I’m afraid of over doing because of the flare ups, I don’t know what to do or how to handle a flare up when it happens. I have had two and they lasted 3 days along with throwing up I was in so much pain. I don’t take pain pills but I have some. Like you I don’t want to go that direction. I can’t grocery shop, stand in one place too long or walk a long distance.
    Your story inspires me to push myself a little more. I want to post on my status: Going shopping, or Going boating,etc… instead im home because I CAN’T, but I’m going to start working on a plan of exercise.
    Thank you Lisa,

    Chris

  2. March 20, 2011 at 7:57 pm

    I just love this part: “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.”

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