Friday, November 28, 2008

Fighting it

After two weeks of telling myself "it'll be gone by tomorrow", I give in.  It's official.  My auto-immune thingy is back.  Ugh.  Warning: this post contains medical details that some people may find icky, so if you're not sure just stop here.  

Since the last time I wrote about it, I've learned more that seems to relate to my condition.  Firstly, I found out that taking sulfa antibiotics can trigger lupus.  My doctor found anti-nucleic antibodies in my blood: one of the markers of lupus.  Also, lupus can exist in many forms, from life-threatening to very mild.  I suspect that I have a very mild form of lupus.  

(My doctor did not go so far as to make a diagnosis.  He just told me that I had the antibodies and left it to me to Google the implications.)

I had no such problems until I took a sulfa antibiotic when I was 21.  After a few days of taking the pills, I had a severe reaction in which I broke out in hives from my neck down to my toes, and ran a fever.  I remember my boyfriend at the time telling me I looked like an alien; holding his hand over my arm to feel the heat radiating from my swollen skin.  

My legs swelled up so much that all the capillaries popped and the skin turned blue with bruising.  That was really gross.

Anyway, I recuperated from the reaction, but after that I became prone to outbreaks of hives.  When I was under stress, or ate something too spicy, I'd have an attack.

It would start in my abdomen, a knot of heat and pain.  Then the knot would untie itself, releasing rays of heat.  I could feel the badness exploding out from that middle point to my joints and skin.  My knees, knuckles, and elbows turned bright red and swelled up.  The palms of my hands and the soles of my feet, also scarlet and swollen, burned and itched horribly.  After around ten minutes of this reaction, it would subside, leaving me weak, slightly feverish, and exhausted.  It happened at least once a month.

After I left my ex-husband, I stopped getting these reactions.  I joked that I had been allergic to him.  Truly, I had been harbouring a lot of anger and frustration in that relationship, and it came out in my body.  I take psycho-somatic illness to professional levels.

Anyway, I thought I was finally done with all that.  But then I was struck down with a nasty attack around four years ago.  Since then, I get a different set of symptoms, related to the ones I had in my 20's but not quite the same.  Instead of getting severe flare-ups that pass within hours, I go through phases that can last for days or weeks.

The past couple of years have been easy on me.  Sometimes I'll have a day or two where I can feel the symptoms creeping up on me, but if I ignore them and get enough sleep, they'll go away again. 

During the past two weeks I've been getting enough sleep, but I'm not getting off so easy.  The intensity has varied from "I can ignore this if I'm distracted" to "I really just want to crawl under a blanket and whimper".  Today isn't too bad, or I wouldn't have the focus and energy to write.  

When it's bad, my muscles and joints ache.  My knees, hands, and feet stiffen up.  I can tell how bad the day will be as soon as I put my weight on my feet in the morning.  If it feels like my foot bones are grinding against each other, it's not going to be fun.  I also get that grinding feeling in my head, like the bony plates of my skull are tectonic plates, shifting.

I get a heavy feeling in my chest, as though I have congestion, but there is none.  I'm guessing it's inflammation.  And all my soft insides get tender and achey.  It's kind of like the feeling of having the flu.  And I get tired.  Not too tired to stand up, but tired enough that I can't cope well with any extra stress.  Even if I've had 8 hours sleep the night before, by 8:30 pm I'm already feeling desperately exhausted.  

This thing generously grants me just enough energy to work all day and eat dinner, and then I'm down for the count.  I'll dither around until 9:30, because I can't stand the thought of going to bed so early, but I'm too grouchy to talk on the phone, too tired to read, and generally useless.  It really does nothing for my social life.

After two weeks of living like this, I'm running out of tolerance.  It's starting to seriously tick me off.  I'd better get better real soon-like, or else!  Or else...  I don't know.

Anyway, speaking of looking like an alien, these guys cheer me up. :-)



15 comments:

Karen said...

Sorry you are feeling crappy. I also have suffered from an auto-immune thingy. I have fever of unknown origin and my worst attack had me in the hospital for over six weeks. Not fun stuff. Thankfully, other than a minor attack this year, I have been in remission for about 3 years.

Just take care of yourself. Take the weekend to regroup as much as possible.

Warped Mind of Ron said...

Well gosh how couldn't those guys cheer you up? {{HUGS}} Hope you are feeling better soon.

Keera Ann Fox said...

Dang. The third person I know who has lupus. And no, you don't want the severe version (it can kill, you know).

Anyway, here's counting on Canadian health care taking good care of you. Lord knows the American one wouldn't. Just ask my California Lupus friend. :-(

Thanks for the clip of some of my favorite Sesame St. characters!

whatigotsofar said...

If you get better real soon, I'll, gee, I dunno, I'll do something.
Just get better, 'kay.

Sparkling Red said...

Karen: Six weeks in the hospital - that must have been awful. I'm lucky that I'm not worse off, and I know it.
This weekend I intend to stay as horizontal as possible. Hopefully that'll help.

Ron: Yay! I was counting on hugs from you. That's the only reason I wrote this whole thing. I'm just a manipulative hug-whore. ;-)

Keera: I'm aware that full-blown Lupus is unspeakably awful, and fatal without treatment. That really helps to put my minor aches and pains into perspective. I'm not sure what the health care system can do for me, since I'm lucky enough to have a very mild case. I don't know what else they can do other than prescribe immuno-suppressant drugs, if things get dangerously bad. If I don't feel better in one more week I'll go see my g.p. and we'll see what he has up his sleeve for me, if anything.

Whatigotsofar: Thanks. :-) I will try my best.

Nicole said...

Oh dear :(
Hope you get better soon!
Being sick sucks.
Being sick & not knowing how to get better.....double crap :(
Hugs!

unsigned said...

I hope you feel better soon!

Claire said...

You poor thing! I hope you are feeling better soon!

Cxx

Sabrae said...

Now you had my hopes up of some really icky sick diagnois with pictures and everything!! lol way to get a girls hopes up! lol Nah it wasn't bad... I'm a nurse... nothing phases me any more! lol Get better soon!!! MUAH!

Sparkling Red said...

Nicole: Since I published this post, a friend let me in on the magical powers of Rub A535, a topical analgesic. Do they have it where you're living? Anyway, it's already helping me feel better, so Yay!

Unsigned and Claire: Thanks to both of you! The good thoughts help to keep me smiling.

Sabrae: A nurse... Well, for real, that was pretty tame, by nursing standards! I work in a medical clinic, and am very happy to be safely hidden away in the adminstrative offices. I'm always grateful that if there's barfing at work, it's never my problem.

desi said...

Here's to you feeling better in a hurry, because we all want you well.

San said...

Spark, I am so happy because on this post I am able to comment. On your subsequent post, my typing would not appear. Go figure.

Although I don't have the auto-immune thingy, I do have an allergy to Sulfa drugs. They make me break out and I cannot take them.

And I do believe you can be allergic to people who are bad for you, especially if you keep all the hurt and anger balled up inside--it has to erupt somewhere. Why not through your skin?

Jenski said...

I am amazed that your doctor did not give a more definitive diagnosis when you can point the start of these spells to a specific treatment with a sulfa drug! I'm a little behind and glad to hear that you found something to use to ease the aching. I hope it has helped you rest and heal.

Sparkling Red said...

Desi: Thanks! I'm working on it. :-)

San: So true. Although I hope my ex never finds out. I know that he was trying his best and only acting out his own issues. He'd feel terrible if he knew that I was "allergic" to him!

Jenski: Well, the way it all happened was that 2 years ago my doctor found the anti-nuclear antibodies in my blood, and it was only 1 year ago that I found the article about sulfa drugs, which I didn't discuss with him because at the time I was assymptomatic. He's only been my doctor for 3 years, so he doesn't know about the sulfa reaction. I'll speak with him about it at some point if my symptoms don't calm down soon.

Aurora said...

Ugh, that sounds so horrible--so much pain and suffering. Sorry to hear you're flaring up again. Some of the things you've written about seem to be extra stress which (it sounds like) could trigger the flareups. I hope you can get lots of rest and do things that revitalize rather than stress you out.