Ankylosing Spondylitis

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I was diagnosed with Ankylosing Spondylitis almost a half a year ago.

Originally I thought my symptoms were something else that was big on my Dad’s side of the family. After going through various tests, this is what came up. I had no idea what it was until it was explained to me by the specialist. They also think this is the cause of all the iritis attacks I’ve been having over the last decade or so. So hopefully treatment for this will lead to less attacks.

Some days are decent, a lot of days are not. There are days when I can walk to the mall without discomfort, there are days when I need a cane just to go to the bathroom. Fatigue is the worst part. I could sleep for 12 hours and will wake up feeling like it was only an hour or two. It’s hard to want to do anything when you have next to no energy but I’ve been taking some vitiman supplements to help combat that.

The soreness doesn’t go away. My shoulders, my arms, my legs, hips and feet are constantly sore 24/7. My back is very sore but I’ve done well to not let the boys know how I really feel. As far as they know, things are pretty much the same. I’m not really sure how long I’ll be able to keep that up.

Needless to say, this has made finding work extremely difficult. Combine this with the fact that I have a very weak bone density (Osterio Perosis) and simple task like standing for periods of time or lifting stuff is too dangerous to do and could cause a lot of pain and permanent damage.

With all the snow and ice outside, do you blame me for wanting to stay indoors? One slip on a patch of ice could have dire consequences and could result in an extended hospital stay.

This is an ailment that is not widely known, so to try to explain this to people who are ignorant of it is very difficult. Some people, including some members of my own family, are going to accuse me of just being lazy, and that I need to try more. They don’t understand that my attitude or work ethic has nothing to do with the current situation. They’ll never understand so sometimes I don’t see the point in even trying to explain it. It’s hurtful when people refuse to understand what you’re going through, but if they don’t want to, I have to shrug it off and try to not take it personally. Easier said than done, but I’m trying.

I’m starting to take some medication to combat it, but so far it’s not doing very much for me. There are other options, but at the moment I don’t qualify to get them covered. I have to either have mutiple fractures or be 75 years of age in order to get them. In other words not happening anytime soon cause I don’t intend to have any fractures.

According to the research I’ve done, there is nothing that actually ’causes’ what I have. As far as they know, it’s something genetic. There is nothing I could have done to prevent this, it’s just something that was always there. Based on what I’ve read, I remember seeing a lot of the symptoms in my grandfather (on my Mom’s side) so I’m pretty confident that’s where it likely came from. I’m doing my best to get out and walk a bit, I’ve even lost some weight since my diagnosis (20 lbs) and will try to lose more which can only help.

This is a big thing I’ve been keeping to myself for the past several months. I’ve been trying to be very quiet about it since I try to live by the motto that if there’s nothing anyone can do about it, there’s no point griping about it. People have taken that the wrong way, but I don’t see how it’s any of their business what I’m doing and why.

So I disclose to this my readers on OD, confident that some of you will go a little easier on me and understand that not being able to do what I want to do isn’t the same as not wanting to do it. The people I’ve been working through this with are happy that I’ve still managed to do stuff despite what I’m going through, such as the volunteer work and the writing. I will keep trying, but I can’t promise anything.

Right now I’m taking it one day at a time. Some days are better than others but I take it as it comes. I hope everyone has a good weekend, but I have to go now. There’s a lineup here for the computer. If I can wrestle the computer away from the boys later today, I might come back and read a few favs and leave some notes. Until then, take care.

Peter