Tuesday, January 16, 2007

So, it's Tuesday

(trust me, even knowing the days of the week is a HUGE improvement over last week).

Hi everybody! I want to thank you all, again, for all the warm thoughts and well wishes: I want to post about the flare, and at the same time I don't. Because I am sick.to.death. of it. The worst (of this one anyways) seems to have passed, and for that I am very, very grateful.

So, let me start with some cleaning up:

PowersTwinB said...
Hi, I am new to blogger...I was wondering if you could please give me the URL for the But You Don't Look Sick board? I have fibromyagia and arthritis...sounds just like my kind of place...And please come and visit my new blog?

PowersTwinB: I will certainly stop by your new blog: welcome to the blogosphere! The address for the BYDLS boards is: (trickily enough)www.butyoudontlooksick.com/boards: it is a fabulous and welcoming community, so please stop by.

To the e-mailer anon, who asked if I could, specifically, talk about my diagnoses. No. But only because everytime I go to the doctors, they fiddle with them all a little bit more. But the things that just about everybody seems to agree on are these:
Chronic Fatigue Immune Dysfunction Syndrome. On that page, you cn find most of my other diagonses as well: Fibromyalgia, Postural Orthostatic Hypotensive Syndrome, Multiple Chemical Sensitivities (aka the "I am allergic to everysinglethingevermade syndrome") & most of my symptoms. The CFIDS diagnosis is pretty much useless: it's a clump of conditions with various causes and nobody really knows why they clump together the way they do. It's a blast. Particularly the hit-or-miss aspect to treatments. Fun and games, I tell you.

Under the umbrella of CFIDS comes the various things that make my everyday so enjoyable: an immune system that lacks the capability to protect me from illnesses (hypogammaglobunemia), asthma, chronic sinusitus, brain fog, and on and on. In the past few years, the pain aspect of the syndrome - the Fibromyalgia, it seems - has claimed center stage. Most of my efforts have been focused on getting that - just the overwhelming pain - into some sort of managable form.
This has shown me two things, really: 1) A person can live with an obscene amount of pain, even when they may wish it otherwise and 2) Very little else matters, when you're in that kind of pain. This past week, for example, had the house been on fire, I don't think I would have noticed. And if I did notice, I doubt very much that I would've cared: there was only me and the pain and the idea of not making more pain.

Ah, see what I did there? I said I wasn't going to talk about it, and then I did. Boo.

Anyways, that wraps up all the loose ends, I think; I should be back later with something completely different to talk about (even if I have to make it up!)

Thanks again, for sticking!


Maya's Granny said...

I've not been getting to blogs as much the last couple of weeks or so, since I was sick and busy and all of that. And while I wasn't paying attention, you had a flare. So sorry about that. Glad it seems to be subsiding.

Jo said...

It's great to hear you're feeling a little better! :o)