Ankylosing spondilitis awareness month

So apparently this is Ankylosing spondilitis awareness month, which I just learned today courtesy of the AS Group on Facebook.  Overall I like this group, lots of people discussing AS, sharing stories, things like that.  There is at least one or two major god-bots over there that keep talking about the power of prayer, which is irritating as hell, but I just ignore them.  I mean, if God heals, stop taking your meds and pray, see how far that gets you.

I’ll be honest about having AS; it gets to you after a while, and it hits pretty hard.  You have to come to terms with it; there’s no cure.  At first I thought I would just beat it, after all it was only a sore back and hip.  I kept thinking that if I just lay down for awhile that it will stop hurting and I could go on with my life; of course, it’s not true.  The pain never ends, and laying around makes things worse.  It’s really hard to deal with something like this.  I’m going to be on pain meds for the rest of my life just to keep things bearable; I’m going to live in constant pain for the rest of my life, which sometimes you just hope isn’t that long.

Things started out with a sore back and hip, which I attributed to traveling so much to Morgantown, a 3 hour trip one-way.  I mean it made sense, but then when I took a break from travel things just got worse.  My regular doctor insisted I pulled a muscle or something, which is a load of crap and I told him as much; he recommended a Chiropractor and I said no, I’ll take a doctor instead.  So he ordered some x-rays and saw the damage; I was referred to a rheumatologist who quickly diagnosed me with AS after I told him about my symptoms.  He said the x-ray was nearly definitive, and of course wanted to do blood work which I declined 🙂

It turns out that I’ve been sick for a long time but didn’t know it.  I’m tired all of the time, anyone who knows me will know that I can sleep for 14 hours with no trouble, and I never knew why I was so tired all the time; chronic fatigue is a symptom of AS as well as other auto immune diseases.  I always seem to get sick after I eat anything, which my rheumatologist attributed to irritable bowel syndrome, another symptom of AS.  I have mild psoriasis, another symptom.  The pain simply came last, which he said was normal.

I was referred to a pain management doctor, Matt Ranson, who ordered two MRIs, no contrast; he ordered a bone scan as well, but the stupid nuclear medicine team had already left, so we just said screw it.  MRIs are a simple procedure, you simply lay in a tube for about 30 minutes.  They heat you up pretty good, but the folks who run the machine blow cool air thru the tube for you.  They’re really nice there, and they’ll chat with you, but you just want to cry; everybody knows that you’re sick and all they’re doing is scoping the damage.  You just sorta lay there and try not to think about it.  You try not to think that you’ve passed this off to your children; thinking that they’ve inherited this disease from you hurts more than I can put into words.

So the MRIs come back and the damage is pretty clear.  I have severe arthritis/fusing in my left hip (right hip if you’re looking at me).  There are two spots of severe arthritis in my back.  The arthritis in my back is putting pressure on the nerves that go from your back thru your abdomen (kinda like a rib cage of nerves), which makes it feel as if I’m in a vice grip all of the time; this hurts pretty bad, but the meds I’m on make it pretty much stop.

My ribs have a lot of bony growths on them, which again is expected from AS.  Before I was on gabapentin, it felt as if I was being punched in the ribs and the upper part of my back all of the time, really hard.  It hurt so bad to even breathe, let along move around.  The meds have helped a lot with this, but the back pain is still there.

There’s pain all the way from my hip up to the base of my neck, all of the time.  I’m starting to get pain in my knees as well, which is also expected.  Some days are better than others, but the bad days are starting to greatly outnumber the good.  My meds pretty much keep me dizzy anymore, so I think I’ve decided that I’m not going to drive anymore.  I can’t focus on the road and I can’t keep the car straight; I’d rather not be in a wreck, so I think my driving days are over.

For me, probably the worst part is the loneliness; there’s no one here to talk to about it, no one else who understands.  This isn’t easy to come to terms with.  You want to beat it, you want to have your life back, but you just can’t; the life I had is over now and I have to make the best of my life now.  You just have to accept that there are things you just can’t do anymore.  Mowing the lawn is a bit too hard for me, I can’t walk that long, so I may get a riding mower to help out.  I can’t carry a lot anymore, so I have to make extra trips to bring in groceries.  I have to be careful holding Miles so that I don’t drop him on the floor.

It’s a hard thing to handle, but so far I’m doing fairly well with it; as long as I don’t develop amyloidosis I’ll be all right 🙂  Of course if I do develop it, and it turns into subtype AA, I would be terminal, which of course would be worse.  Hopefully this helps somebody understand the things we go through.  It’s not easy, but it can be kept in control.  Take your meds, on time, every day.  Do NOT mess with junk science such as the gluten-free nonsense.  Try to keep active, like moving around; this helps AS quite a bit.  It’s not easy due to the pain, but just try.  Try not to get too sad or make bad decisions.  Pain can cause you to take shortcuts and make mistakes; fear of pain is probably worse.  Pace yourself and think things through.  Know your limits, don’t overdo anything.  Simple things like lifting can cause major damage to your bones.

And if you have to, see a shrink.  It’s not a sign of weakness to seek help.  This disease is terrible and sometimes you just need somebody to talk to about it.  I think it’s pretty easy to get depressed about this stuff, and that’s the last thing anyone needs.

Well, I’m signing off.  Hopefully this helps somebody by letting you know that you’re not alone, we’re out here, just a bit spread out.

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One Response to “Ankylosing spondilitis awareness month”

  1. Barry Says:

    I know I can’t relate, and I know from a practical and physical standpoint this won’t help much. But from an emotional standpoint, you have my full support.

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