Friday, September 23, 2005

blue meanies

Sorry I haven't posted in awhile. I have been in a very blah, cranky place and didn't want to inflict it on you. I'm still not happy go-lucky chirpy but at least I'm through the PMS nobody-loves-me woe-is me blues. Please feel free to skip this post.

My husband has had to take an unexpected trip back to the states for a couple of weeks, at least. The friend I a pal around with a great deal is gone for the next two months. But today she let me break into her stash of DVDs, so at least I have some entertainment.

I had several tests done this last week. I either have loose cartilage ("joint mice") or some kind of nodule in my knee - so that is going to have to be vacuumed out. But the doctors here have to confer and I won't know for at least another week what the plan is.

Lying motionless in the MRI with my back throbbing, walking home afterwards (couldn't stand the thought of being inside a cab - needed to MOVE) with my hip killing me, as well as the knee throbbing, I realized this is all part of a bigger picture. I'm now convinced I have Ankylosing Spondylitis, a form of arthritis. My brother was diagnosed with it a year and a half ago, after I moved overseas, so I've never been tested for the genetic marker that would help prove I have it.

I hadn't paid that much attention to my brother's diagnosis. I'd superficially read the description and my lower back just wasn't aching nearly as much as it used to when I was working at a computer 8 hrs a day. I can sleep a normal night without waking up in agony (there have been times in the last 12 years when I couldn't say that). But the more I read about AS I see that it affects women in more joints than it does men and isn't just a back thing. One of the places that it can hit is the jaw - leading to clenched teeth and headaches. Headaches - like I have had for over a month now. I wake up and it's hard to open up my mouth - it's like it's frozen. I thought I was clenching for some reason, even tho I'm not under stress or having any reason to do so.

So many of the puzzle pieces are coming together. I'm 98% sure I have the disease. The hard part now is getting it made official. Sigh. Have another doctor's appointment next month and hope I can convince my doc. Don't know that there is going to be a Rheumatologist here who can really help with this - not a disease found in Africa - it mainly hits those of Northern European descent.

I feel so whiny to be going on about this when there are so many people out there with worse diseases or without homes, but I can't help it. I'm trapped in this particular body and it just plain doesn't feel good. I'd like to know that there is a cause for my fatigue and pain and swelling and headaches and it's not just that I am a pathetic, l0w-pain-threshold, hyperchondriac layabout.

Okay, that is all. I will be happier next time. Really.


Finn said...

Hey Ton, you don't have to be who you aren''s ok to be in pain, out of sorts, whinny or whatever else fits the bill. If people don't like it, they don't have to pay attention. If I were in your place I might be sticking straight pins in odd objects by now..*G* And I read a study a few years ago that states a belief that moaning out loud actually helps. When it hurts, moan, groan, wail or what ever fits !! Might not help but sure can't hurt. I think it releases some of the tension energy that pain causes.

I hope you can find a source to help "name" what is going on. Sure sounds like you are on the right track tho..with what your brothers has, and then your increasing symptoms. Would it be possible for you to come States side if you need to? Don't let it go..promise??

I'm one of those tough ole birds, the oldest daughter type, who can stand "whatever", but there are times when all that I can do and want to do is curl up in my bed..snuggle myself in my down comforter(or comforters) and stay put. And sometimes I do that.
Pain and misery and disaster are not on a linear scale. What's happening in the world won't be better or worse because you are feeling what is happening in your life.
that ole "buck up" spirit is soooo American surviver. Which is fine, but not cast in stone.
Take care of you girl ! Hugs, Finn

Dawn said...

Tonya - that is fine, you have a right to whine if you want to. For me the hardest part would probably be being in a foreign country and not in the US. Do you go to regular Egyptian Doctors or where?

Hope things work out for you. I think it sounds like you figured it out, which probably will really help now! Can they do anything for "name?"?

Feel free to whine, complain or whatever - we all have those days! (Heck in my case months! :))


Tracey said...


I've been where you've been. I lived it for 15 years. I KNOW it isn't fun. You whine ALL YOU WANT. No need to put on fronts for any of us. Living life in a body that confines you in pain daily is NOT fun. Getting a dr to *listen* to you and help you is a task in itself. Don't stop until you find him/her. Once you do, and they help you take care of things, you will be amazed. It's like the world is a whole nother place.
Praying for ya, girlie. If you have any questions about me. I'm like the walking/talking encyclopedia on it, unfortunately.

Tonya R said...

All of you, thanks for the support. You amaze me - I can tell you read all thru that cranky little diatribe. Thank you.

Tracey, can you email me? I don't see your email address anywhere. Mine is in my profile. I had my suspicions that you had A.S. after I started researching it this week... Sorry to hear that I was right.

Lisa, Procrastinator Extraordinaire said...

Whine all you want. We're here for you. Hope you can get a good diagnosis and treatment soon.