skin, wounds

[Guest guest]

Excellent description . Pretty much the same with me.

Burns and scratches don't heal the same way, no particular inflammation

or redness. Just as there are rarely blisters on burns that create

craters (usually caused by falling into hot pans, or lighting my

fingers instead of my cigarette - screwed up depth perception). My

feet go numb while I walk, wearing tightly laced boots helps keep them

facing forward, and I purposely walk feet apart rather than one in front

of the other as I used to. On really floppy days I also wear knee

braces, which are still more helpful than a cane or walker.

Acts of clumsiness have included:

Locking my thumb in the car door (fractured thumb, lost thumbnail and

required four stiches)

Pulling the filter queen attachment out of the closet and into my

face (cut to the upper lip into my gums rquiring four stiches)

Two seperate falls when my legs just disappeared under me while

crossing the street (nasty scars)

One fall cracked my elbow open (no idea how I fell)

A number of times ending up sliding unceremoniously down flights of

stairs on my ass

Breaking the membrane which attaches the lower lip to your gums with

my toothbrush (couldn't judge strength needed)

Punctured my lips several times with a fork (in restaurants because

conversation took away the focus needed to eat)

Broken several glasses into my hand while washing them (held them too

tightly)

Nasty bites into my tongue and lip while eating (I no lonnger eat in

restaurants, just drink a steamed milk)

I can't really be surprised when people think I'm drunk either, I

also feel drunk physically. Being in public feels like trying to

pass your parent's drunk test when you're fifteen, it's bloody

exhausting. Summer is the absolute worst. Before my abrupt

dismissal on my last job, my previous two employers (with whom I am still

close friends) insisted on me seeing their own doctors because they

observed these very out of character episodes. However, like a few

of you, I was the breadwinner, and that role did not include spending

great gobs of time having myself looked after. I never used my

extended healcare plan, my kids and my husband did. By the time I

got the Dx I had been unemployable for years, all savings and benefits

gone, my talent management business closed. The volunteer

positions ended because even a few hours every other day was just too

much. Not a day passes that I don't try to come up with ways of

making a living. Unfortunately this illness is so unreliable that I

really cannot make commitments.The mouse click - me too, some days I do

better using my foot, and for the most part I use keystokes (shortcut

keys to launch my programs for instance. The keyboarding is a heck

of a lot better than the mouse.

The worst hand cramping happens when I hold the phone to my ear

(excruciating cramps), so I bought a headset phone (works). My feet

spaz out too at night, the toes spread and contort and not a thing I can

do about it, also have tongue and jaw spasms (chewing gum helps a

bit).

My hands and feet are a few shades darker than the rest of me.

Anyone have experience with tanning (I've stayed out of the sun, but

maybe it would even me out a bit?)

Well, time pack it in and try to sleep.

Is there a table of what different levels of low bp mean?? I've not

found one yet.

Also, my blood iron and cholesterol levels have always been excessvely

high - anyone else noted this? I also have recurring bouts of

polycythemia (high RBC) and twice failed an HIV test (1985, 1986) which

were false positives. someone once mentioned blood tests are

frequently abnormal, is this what was reffered to??

Love y'all.

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com