Ankylosing spondylitis

The Diagnosis….

diagnosis“Before you diagnose yourself with depression or low self-esteem, first make sure that you are not, in fact, just surrounded by assholes.”  Steven Winterburn

The year…. 1992

By this time I was sleeping in my recliner full-time, taking more courses at the university and spending weekdays and weekends hauling my kids around to BMX practices and races. We spent a lot of time going out-of-town racing and many of those times were spent in a tent… oh Lord how I disliked camping and sleeping on a hard ground… Oh yea did I tell you how bad it feels to sleep on the ground? Well I did my motherly duties whether it hurt or not. I was able to keep up with my coursework, on limited sleep, and continued to have shooting pain whenever I decided to lay in my bed for a nap. In the spring I had my first anatomy class which I found pretty awesome, but was even more awesome was the fact that my course book had all these cool diagrams and flow charts that would tell you what to look for when there was any pain in a certain location.

One afternoon I came across “Back Pain” flowchart and started reading the questions. 1. “Did your pain begin after a fall or injury or when you lifted an object?” Well NO. GO TO QUESTION 5… OK going to 5. 5. “Do you have pain that comes and goes and is worse at night or in the morning?” Well YEA.  HAVE YOUR DOCTOR CHECK YOUR BLOOD FOR HLA-B27 GENETIC MARKER. PROBABLE CAUSE; ANKYLOSING SPONDYLITIS

Anky..What? “What the hell is that?” I got up went to the phone and called my doctor’s office. His wife, whom I love dearly, answers the phone. “I need to talk to him.” “What for, something wrong Joyce?” “Yes, I think it’s my blood!” Of course she didn’t even begin to ask me what I was talking about and went and got her husband. “What’s this about your blood Joyce?” “I need to you to check my blood for this anky something or other disease, they say look for HLA-B27.” He didn’t even hesitate with his response “Joyce you can’t have that, it is a man’s disease!”  I responded very clearly, and recall it to this day “I don’t care if it’s a monkey’s disease I want to be tested for it!”

Well that was the end of that conversation you think? Yes it was. I went and got the script the next day and on the following day, after fasting, had the blood work done. By the end of the week I got the call.

“Joyce, I’ll be damned but you DO have Ankylosing Spondylitis, which is really strange. In all my years I have never seen a woman get this disease.” Well gee leave it to me to get a disease that only men get… now I knew my luck was bad. I went in the following week and he changed my anti-inflammatory and said that would be about the only thing that would work. I got the script filled and sent off by mail for an information packet from the Spondylitis Association, because that is what my doc told me to do. Such a good patient I am…

NOTE… before YAHOO/GOOGLE no information could be had without actually submitting it by mail!

The Voltaren the doc put me on began building up in my system pretty rapidly and there were some occasions I could sleep on my bed. I got the information packet from the Spondylitis Association and all I got out of it was to exercise, eat right and sleep on a firm bed. Really? A firm bed? I had a firm bed that I couldn’t use NOW, are they telling me I have to sleep on it for the rest of my life? The rest of it I had covered; I ate well and having two kids, I got plenty of exercise. The pamphlet explained the disease but really didn’t tell me what to expect. I do recall reading that the “discomfort/stiffness” should pass in a couple of years, so at least I knew what I had and now I knew it wasn’t going to kill me and if I could get through the next couple of years I was going to be fine! Surely my life will be back to normal….

In June of that year I bought my own place and with it came a water-bed. Mind you this was high dollar floatation less water-bed that the owners decided to leave for me. What the heck I was going to do with this thing? I didn’t know but after spending all day moving I wasn’t going to bother with it. I fixed it up with an egg crate, you know the foam pad, because who can sleep on plastic? I put some sheets on it and that night I was so tired I just plopped down on it and was out like a light… literally out like a light.

The next morning I woke up and after getting my bearings realized I had slept in a bed all night, I mean ALL night without any pain… what the….

Next week…  Getting Back To Life!

10 replies »

  1. Wow! Sounds familiar.
    I know this isn’t the point, what bed “should” A.S. patients use? I cannt sleep through the night.

    • I now sleep on a thick pillow-top with one of those memory foam pads. I tried the tempur pedic and lasted two nights on it. When I go out of town I always book the hotels with pillow-top beds. I even tried the sleep number but no luck with it either. The unfortunate thing is that you cant test drive beds for longer without having to pay.

  2. I find it amazing how often I hear the “it’s a man’s disease” thing. I only ever knew of it as “what my Nanny’s got” before of course I was diagnosed … So as far as I was concerned it was always a Woman’s thing! 🙂

    • I like that… “What my Nanny’s got” it’s amazing how everything in society has to have a label! I always wondered if my doc had been a woman, would she had said to a man “it’s a woman’s disease!” :0)

  3. Don’t you love shocking your Dr’s? The best part is listening to them attempt to “eat crow”. At least in my experience they still try to sound as if they were right all along as they’re in the process of telling you they were wrong… lol 🙂

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