stuff

[Guest guest]

Haven't been receiving emails from the group since Sunday

morning. Just caught up a little on the web. Bit of a jumble

taking it in that way.

Anyhoo, am I overly sensitive, or is it just wrong to insist on a DNR (do

not resusitate) to then conditionally provide care, or put an expiration

date (6 mos.) on that care should you have the audacity to survive

it?

Bothers me. Also bothers me that I do not have a caregiver.

How will I know when it is time? When it is time and I cannot make

arrangements, how will this be done? A man in his late fifties died

in my apartment building in January, no one found him for days, that

scenario scares me silly. I talked to him often as we passed

on the street, in the lobby, he lived alone. I knew he was disabled

but was fit enough to go to the store himself and seemed in decent

spirits, if someone had been there, would he have lived? I wonder

what data exisits on survival rates with vs. without a caregiver. I

would imagine it is an important variable.

I've looked at programs etc. for people with a terminal illness, they

were all cancer specific (and one for ALS), telling them I had MSA gave

me a shrug in return, they have no protocol, sorry can't help.

Unless I kick my sone to the curb (not going to happen), I can kiss any

homecare goodbye (I felt so much better then).

Blood pressure: mine is all over the place, with OH if I get up

(just do it very slowly), and hypertense lying down. I've tried to

logically discover what triggers it to go up or down, but find

nothing. My heart rate is the same, does not correlate to anything

(activity, food,etc.) Still think in my case it might be linked to

viscosity (improper hydration, drink enough just does not get there) of

my blood. It is harder to pump oil than water. Blood sugar is

always below normal, but not enough to cause any of this. I seem to

need constant but not excessive movement, just to keep blood moving.

Does anyone else find that sometimes while being very relaxed they stop

breathing? Not asleep mind you, just lying about contentedly.

Usually followed by yawning and hiccups (lack of oxygen?)

Buscopan still working and controlling vertigo, ringing in my ears,

colour vision and easing up the pain of bowel spasms (some of the

time). Do find I have more coathanger and the sensation of wearing

a hat, headaches just a bit worse, but same dosage of 292's still make it

bearable enough. It made a huge difference, I was able to socialize

more when my mother-in-law was here. Learned again, that restaurant

food is not very friendly to me, and talking gives me gas.

aletta mes

vancouver, bc

Canada

web:

http://aletta.0catch.com