A New day,thanks, and I LOST ALL my emails(some NCC)

[Guest guest]

Hello fine people. My computer has crashed about 3 times in the last week,

and I lost ALL my emails this time, I had over 200 just from the last 3 days,

just got back up! on here and its all gone gone gone(our computer store is

right up the street) so we are able to take it and get it right back and up,

but everytime something goes wrong (no virus's at least).

I spent some time through emails into the night with my friend a (one of

our members) she helped me a lot! As I couldn't do IM's quick enough to write

and after only one phonecall to my friend Robin yesrtday (who wasn't home) I

basically was totally isolated and VERY ill. I spent almost the entire

afternoon and evening on Inhalers and my Oxygen tanks (someone!!! out here

mentioned a different Oxygen method to me, could you send to me again

PLEASE!!!).

IM so sorry I couldn't write about what was upsetting me the other night, but

I was in shock and have been crying again (so UNLIKE ME), today IM tearless

(crying isn't good for me I cant breath).

Its hard for me to Explain what is wrong with me but it greatly involves my

Diaphragm Paryrlisis, and my partial Blindness that Ive lived with all these

years, DONT even ask me how, its been a Journey that I wouldn't wish on

someone else or someone child.

I told a as i will tell you (I don't like to Scare newer members ), but

the reality of it is this: My Progressive Physical States are Insideious, and

each time they become more and more dangerous towards living an Extremely

Disabled life style, yes Ive been disabled a long time now, but I fight tooth

and nail to keep EVERY thing I have left, I shouldn't have been able to walk

as I do (with canes or without), but I do, My SM. has a history of damage to

my cord, as my Fusion of partial Lumbar and Sacral and Scoliosis, the pain I

Experience in my legs is not something I can Explain, and I should be for all

purposes anatomically and otherwise in my Quickie chair 50% of the time, I am

not, only for one period of my life did I succumb to this and I said " This

will not do " . Ive also developed somwhat of a Myclonic Jerk in the head on

these pressure days that I lose all functions.

My Brain does not function, my spine does not, and I am now a Product of the

terms I use on here " Problems and or severe illness, and or Death, from NOT

the illnesses itself but from what comes from having them and so many of

them, Especially for me the spinalcord.

I will most likely be going back into Hopistal for some closer look at my

Pressure, this pressure that may or may not be communicating from my SM. to

my ACM or vise versa, is just about killing me (Literally).

I have an EXTREME case of " Non-Reabsorbtion of CSF " you need this absorbtion

to go back into the Blood Vessels, the cord, the entire body fucntions with

this Absorbtion and some can have trouble with it, mine is not just not

absorbing, but the amounts of Pressure that increase into my spine and brain

are so huge that they are wiping out my WHOLE system. My Bladder has about

15% function left, my Gastric Emptying about 15%, my vision, well wont go

there even, my legs and arms (Hyperflexia) has now traveled to about 80% of

my Abdominal wall muscles, and even my butt! (sorry), I have almost NO touch

or Pin Prick sensations left in my entire body light touch is about 5% left

on body.

After this last surgery escaped all my functions went up for the first time

in years, and it was more dramatic beaucse I was in such bad shape that

required so long of surgery this last time, The Miracle is totally gone and

replaced with even more Progressions, the surgery itself this time as was

before, was needed, THIS we know for sure, however I went right back into the

same state of Physical Deteriorations, unfortunatly for me, thats serious

stuff.

I will most likely have One or both Spinalcord AND or Brain suergy again, or

at some point will have to be Trached, and since this is not an option of

going blind or not breathing ever on my own again, well then I have no

choice, I have a family and they need me as I do them.

They are finally hooking me up with a Brain Trauma Spinalcord Trauma

Therapist so I can talk and my family can talk, we are a very close family,

but now they are asking me if I will die, this is not good, but the realities

are that I am not a well woman despite how well I hide it, I am one of those

I see at my hopistal for Brain Injured and Spine Injured, I am no longer

separate, and I am DEVASTATED beyond belief, but I have to find some medium

ground here to work with, Ive never been a quitter, IM a survivor through and

through and I will fight, through tears and Screams and silent thoughts ALL

the way through this just as Darlene has.

I dont feel strong right now emotinaly or otherwise, and will continue to

help (usually on a private basis), I can never walk away and not help, would

be uncharacteristic of me).

Thankyou all who wrote me IM sure I cannot possibly remember now because I

lost them all.

Just so you know I made a choice not to be Trached, and my husband knows this.

BUT with prayers and support and GODS loving ways I will TRY to keep faith

that he has and is going to find a way to help me out of this.

As Captain Kirk always said " There is ALWAYS a way out " and I will find it, I

just HAVE to.

Peace

Dali Dawn in CO