Ray - psychiatry: dizzydancer - weakness, skin; tubes bags and stuff

[Guest guest]

Ray:

Yes, I have and highly recommend it. It gives me a safe place to vent my

pain an anger at being disabled and cut down at age 48. I've seen him

since my sleep and fatigue problems made work difficult for me (about 5

years), without him I'd never have found out shy-Drager even existed and

he's probably saved me more than once by putting me on meds when everyone

else hedged on treating my symptoms. Though I have no psychiatric illness,

dealing with all of this can make you angry and depressed and I've

considered suicide more than once, just to end the pain, talking with him

gave me back some dignity and perspective. Find someone who believes in

talk therapy over perscription pads however, and you have to be able to

develop comfort and trust, if you do not click with him/her find someone else.

Ray (the other one) is right, exercise is very helpful, I've practiced yoga

everyday of my life and continue to do so. Breathing exercises help keep

tissues oxegenated (sp?) and both improve bloodflow. Cardio has not been

possible now for the last three years, I get warm - pass out, or fall over

just because, I'm out of breat walking to the bathroom some days. But the

stretching and bending can be done sitting, lying down etc. Because

bloodflow to my hands and feet is severly impaired I have developed toe

exercises (toes also assist in keeping your balance when you are tippy,

just grip the ground as you walk), and finger exercises using cheap

(mailman variety) rubber bands, just make them up, the point is to keep

moving. With MSA the brain is frequently misinformed or just not acting on

true information, your job is to outreason your faulty autonomic system.

Just because your arms feel heavy or weak does not automatically mean they

will not move. I let my left arm waste away because a doctor told me that

if I had shooting pains in my arm I should not push it (thinking my spine

had a problem). After a spinal problem was ruled out I found I could deal

with the pain and move all the same. I check for symmetry (the dancer in

me) once a week to make certain nothing is falling behind, so far my

calves, upper arms, thighs and forearms have not lost any muscle, but you

have to work at it. A good Tai Chi instructor makes for a good therapist,

the techinique is very sound and the movements are very well suited to

someone with balance problems. If you're ever in the neigbourhood I'd be

happy to help. Basically, no one has a treatment for MSA or a cure, find

someone who is supportive and instead of anger become determined to live

with MSA longer than Harriet (28 years with MSA) in Hawaii, and live well

enough to inspire the poor unfortunates who will find themselves where you

are now.

----------------------------Question #1-do you get weak when running

fever?? In the ER I couldn't

lift my arms or legs, that's weak! Had to ask member of family to

move arm or leg when I needed. Couldn't EVEN punch button to call

nurse in hospital for the whole first day. All this is a first for me.

Yes, I do. Even blinking is too much effort, and breathing too. Last night

I had to ask my son to move my legs and help me move a bit, aside from the

stiffness moving was excruciatingly painful. I've had unrelenting

constipation for the last two weeks and likely have an infection as well.

This is not the first time. Once the underlying infection (or whatever) is

dealt with strength will return. Keep moving - not matter what (I'm having

a hard time with motivation, but remember the results of not walking the

walk).

_________________Question#2-when given an antibiotic does your skin sluff

(sp?) off?

I loose all the old skin in my throat, and my tongue then all is very

sensitive for a couple days after and it also beet red. I can watch

it happening on my tongue as it is beet red where new skin is and

patches of white there still left to go.

Just a guess that you've probably had dry mouth for a while, it is actually

sloughing off of mucus membranes (kinda skin) which have become dried. My

mouth is chronically dry and the membranes hang from my toothbrush, the

dryness makes it red and very sensitive. There are mouth moisturizers (my

favourite is Sage) and those will help with the redness and often the

membranes will stop shedding. I use it every night before going to sleep,

protective for when I end up sleeping with my mouth open (never used to do

that). Chewing a SOFT minty chewing gum gives temporary relief but it does

promote the membranes shedding.

Hope that helps.

Right now I can't eat (too constipated - just comes back up- looking

pregnant), can't poop (fullof sh*t) and it is seriously impairing my

ability to pee. Wouldn't take much to sell me on tubes and bags, spending

so much time with these primal bodily function I hardly feel human, how

could a feeding tube etc. possibly make me feel worse?

My sister is pregnant (#6), very Catholic of her. I've already applied for

the godmother position. So I'm invited to go to her house to be buffer zone

for when she tells Mom (she'll blow a gasket - my brother in-law is

Chinese, she could barely accept my Hungarian husband). I think it's a

girl, maybe two.

so as I mentioned I was so rigid my son had to help me move and it hurt

like hell when he did, I've been rigid before but nothing like this. I'd

taken a bath to warm up, was so faint I lied down in the fetal position,

could not move, blink or go for the TV remote (have to be nearly dead for

that) for at least an hour. After being moved about a bit I took my temp

35C. Mentally I was all there. I was still feeling very badly when I

finally wnet to sleep and am not all that well today either. What could

that mean? Anything? My legs have patches of small blue bruises (1cm) 30

on one leg, they don't hurt, and I don't recal doing anything that could

have caused that, ideas?

Take care.

aletta mes, vancouver, bc canada

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Site: http://www.aletta.0catch.com