Tis Just Me (Very long)

[Guest guest]

Good morning good people and welcome always to newer members who are here for

themselves or their loved ones, you have a found a wonderful site and group

of people.

Sorry I haven't been on here to help much in a while but the body donest

always allow that luxury for me, and yes helping is that to me and something

I cherish and is given back to me also.

Since May 3rd surgery (no not my first) my body has taken quite a toll. In

Many cases with Chiari that is addressed ASAP one will have better chances to

do well overall, for some of us who have many illnesses associated with

Chiari its not always so easy, I have friends that like me will require

surgical and medical attention proably most thier lives, many are

youngsters)to either stabilize again or to keep from roads healtwise that are

dark dark territory and hard to digest. These are adults, young adults and

adults like myself (41).

I have started Progressing quite rapidly again, don't get me wrong (newbies)

its not usually this way and ALL my surgeries have been totally necessary

without a doubt, since interventions must be made to prevent things for a few

of us such as Trechs,Vents,Tubes in various parts of the body that we wish

wernt. Basically I got off pretty -free since I was born with what

normally would have sent me into these surgeries as a child, and like a child

I now at 41 am having to go through it since I was born with it all, however

when I was born it was 1960 and I am glad that as an adult I live in a time

that they have Progressed medically so much futhether and I may not have

lived at all back then so " thank God for that " .

I have been a patient at Craig Brain and Spinalcord Trauma for many years now

as some of you know, its one of the top 5 in the whole nation, its a place

where reeves has come and worked with my NSG, its the place where

all the Columbine kids came and some still do, its where a very few have come

then gone to Israel to have Cell therapy then come back to for more rehab,

its mainly all Quads and Paras, some ALS wihc my brother died from, and then

Truama. Ive been there since about March 97 a long time now,......

I know everyone there practaily, and have made sooo many friends, I have one

of the best PTs in the whole world I feel, I have one of the best

Pulmonarys,best NSGs and NSG Nurses, Secretatries,Aids /BOY do I love them,

they take good care of me, I alos have my Mental Health Therapist there who

deals Only with us there and helps me in long-term care and overall care. I

am actually quite well emotionaly, depsreesesd yes but more of a greieving

process whihc is normal . I haveNO denial left in this gal, I am one of them

and they me now.

IM now back to tanks slowly but surely, and my partial blindness well its

getting worse, my legs well never mind how I do it but I am walking again

with canes without and with Quickie behind me, REALLY don't ask beuasce we

ALL still marvel that I walk at ALL!!!!,ha,ha,ha,ha,h I actually HAVE defied

the odds and its the Miracle of all miracles around here and to my friends at

the Hospital, BUT I have seen MANY miracles where I go so I do believe in

them, howrevrt the one miracle that isn't probably going to happen is me

being a well person, NOW the goal is to stay off the vent, the Diaphragm

Paresis is bacl FULL bloom as is my severe Dysphagia, HOWEVER! through shakes

and nutrition workups that I have designed myself over 5 yteras I have

Managed to ALMOST get to 100 pounds, NOW THAT is a miracle to me presosanly

to have managed to stay off the tube for this long.

So all in all I will take my miracles and we will now see what we can do to

start Diaphragm Therapy, my muscles on both lobes are just too weak at this

point and I have lost about 75% of my voice so needless to say I RALREY talk

on the phone anymore and am back to sign language with my kids and hubby,

well that's the way it goes IM a Progressive gal,ha,ha,ha,hah,a but you know

what IM finally doing what I said over 4 years ago that I would do " DRUM ROLL

PLEASE "

I have been asked to start my Volunteer work that I so dearly have wanted to

do and now that I know there's nothing I can do surgericaily . my therpaist

asked me if I would start soon beuasce she has a man who she feels I cuold

help . You see folks most these people where I go stay for weeks to months, I

have weeks but not months and they are from out of town or state or Country

in Europe even and they fly here and have surgeries like mine,m then they

stay and do rehab so Im going in next month to meet my first patient and then

I will do some volunteer training and start as a regular end of August when

kids go back to school.

I know your probably thinking " DAWN you cant even talk " , well you know what,

I have a heart and I have ears and I have Knowledge up the Butt! and I have

lived this way for a long time now disabled that I know what its like to

always be at the hospital and be poked at, I know what its like to wake up

ONE morning and all your dreams are shot, I also know what its like to try to

be a parent, a spouse and live this way, and how it is for them to live with

me, so when I can talk I will, when I cant I will just hold a hand, wipe a

tear, put some CD headphones on them, read a few lines in a book, sew them a

special pillow to lay on thats only theirs to keep, watch some TV if they

wish or just sit and do nothing but BE THERE! .

And If I have to come some times in my own Quickie I WILL, just so some of

them know they can look forward to that visit and not feel so alone beuacse

MAN do I know how that feels, I also know that you CAN still reach some

dreams only you have to change the way you do it and how and when and IM a

Pro at that part, I call it " Redefining ones life " .

So No IM not a great golfer anymore, no more 43 score on 9 holes, no more

competing, no more great tennis rounds with hubby, no more swimming, havent

done any of it since I got so ill so long ago, however! if my arms DO ever

get better I can play even from a Chair lift its the LAW now for someone like

myself to be able to play that way on the course (YAHOO ADA), and then of

cousre that race car course I want to do.

Am I depressed, yes I am, scared yes terrified, relieved yes in some ways so

I can move on, can I still laugh, you BET I can even if silent, can I still

live? YES I can I don't know for how long but if living is determined NOT by

health alone then I could live a VERY long time.

" Be at Peace with yourself and Love tremendously "

Love always

Dahli Dawn

ACM,SM,SC,SB(Transitional Lumbar sacral fusion),Diaprahgm Paresis 1

1/2cmintake, Heart Murmur(mild),Trachycardia,Brachycardia,Sinus

Ryhtmia,Reguritation of valve(but hloding all its own currently so no

meds),Inherited COPD, Ashtma thats bad right now(weather),Delayed Gastric

Emptying,Right eye parital blindess with more fading occuring in both eyes

now, permanat hearing loss 60% left ear 25 right, yes I know I know I need a

new hearing aid.

" And YES still very much alive, just get lonley some times very lonley

indeed. " Wish I had more shoulders to cry on at times but I guess mine were

meant to care for others tears. "