Hello alll (some NCC) and its aglong tongiht.

[Guest guest]

Hello fine people and our lovley younger members whom are so wise beyond

thier years to my delight.

I had to cancel my hours and hours woirth of appts last week due to snow, had

my scooter all ready but no one to take me, wont fit in a taxi cab. So appts

will be this coming thrusday and the following week for visit after tests

with my neruo doc at my hopistal.

Ive been reading a few emails but delted most due top fact that I can only

write so much with such loss of hand use. Fro those of you whom are able to

use hands and have air and vision be glad you have it for most part of

ldaily life, I howeer do still apprecitae what uses I do have left and will

always apprecirtate them.

I go t back my tests (yearly) from my newere eye specialits this man is sharp

and was acutaly recoomend by my longtime eye specialits his expertise in my

neuro eye probl,es is more extnesive however and I will see him Monday am to

go over tests results he sent me via mail. most you knoww I have partial

boindess from ICP, yearS and years woirth of ICP, I have a very very

signfifacnt loss of Perifihal vision and very signififcant constirrtcion in

both eyes mine is due to all the past years hwoever of this and most likley

permanat at this point, Im sad but ok Ive got to just look atht the things I

can change at this pint in life.

Tongiht my husnand took me out to the computer store fianly and we got my new

system so I can use headphonees and talk to write on here, we will set it up

tommorw, on tank days I will have to write e when I can and on days I can

breath I will use the headphoness to dicate all my emails, I hope both hold

out long eneough for me to be on here a long time as I would hgreathly miss

not bieng able to corespond with you all after being on here since 97 that

part makes me the saddest but I will AWLAYS find a way to be with you and wil

tyr to remmebr to use specckcheker when I can.

I wSA READING soemones post about the subejct of " enduring " ???, enduringg is

subjectibve but we MUST endure or you will parish, and we all Endure to

whatever extenet our pysical limitatiosn are and they are quite varied in

such a large group so just be mindful that each personss toleracne or

capacites of endurance are thiers to own. For me I can and have endurered

alot and Im old enoughg to know that I will always be this way beuacse I

always have been so that will never chacnge in me, its my nature and my

charachter to be this way, so for me enduring just means survival whihc Im

very good at, it comes naturaly to me, but to some it does not and we must be

tolerant and compassionate to those who struggel with Enduring with issues we

may not see as didfficult as others, cannot eveer compare it will do you in

beuacse there will always be someone out there who seems to have endured more

that yourself and I know many whom I feel have more than me yet they feel the

oopposite.

Just my thoughts on thats word, its a good word to bring up I think and I

liked the post I read abouat it, I think it was " grammy??? soorry dont

remmber but I think maybe so.

This note here is takaing me about a half hour now to write anss I stop and

then write some more thoughts sosrry if its too long .

On a fdfifirent note Iw atned to mention that my greind Gray parker wrote me,

he clalse me tooo n the phone soemtimes or we meet here, my husba dis also

friends and enjoyes Gray hes a nice man and weve known him since about 98

thorugh wACMA. has been sdoidng so well with his Chiari overall, but he

had some years agai since Ive known him Skin cancer and its back and he seems

concered this time about it, hes only in his 30s, so Id appr3ecitae some

preayrs for Grary our longtime wACMA freind who lost his fiance last

year to AStham attack, it was too sad.

I love to read posts to mee but I hoensly just cannot write you all bacak

right now Im very sorry, just a few at a taimne, tlaking on the hpone is too

hard right now also, so I may go get a p hands free phone, maybe tomnmoirw.

Well thast about all. I love you all and amam alawya thinkg about you all

each anad every day.

Please makee oiuyr newr young members feel at home, bieng a teenager with

this illness or younger kids that we have must just be the harderst thing and

they are the BRAVEST of all in my boook. Im so glad they are heree I love to

read thier postss they inspire me so very much.

Peace and Ldove always

Dahli dDawn