Me and My Disease

[Guest guest]

Hello out there. My name is Jeff Quick, I live in California and I

have neurosarcoidosis. I have been awear of this for about 2 years

now. I am 34 years old with 2 daughters 6 & 1.

I have no feeling from my waste to my toes. I have very bad back

pain all the time, bad eyes, headaches, fevers and chills. Basically

I have it all. I spend most of the time in the wheelchair, so that

sucks. And of coarse I have gotten Fat.... I have been to every

doctor and tried alot of medication and nothing has worked. I think

it actually made me worse. I have had about 10 visits to the

hospital for everything. My longest stay was 2 1\2 weeks. No fun..

Yes I have a hard time with this everyday. I really think god

doesn't like me. I am mad, fustrated. I cannot play with my kids. I

was active with 17 years of soccer and then coached for 5. Softball,

And my favorite was waterskiing.

Of coarse I am on SSI and everybody knows that is a pain in the butt

amd you don't want me to get started on Medi-Cal. What a F__King

joke that is. Thank you for your time. Jeff

[Guest guest]

Hi Jeff,

I am sorry that you have this horrible disease. I have had it for

about 2 1/2 years, but was only dxed in February of this year. It

took that long for the Drs to figure out what it is called, and they

still have no idea what to do about it.

I understand what you are saying about not being able to play with

your kids. I am a single mom with two girls 5 and 8. They have

been struggling with my illness right along, and God bless them,

they do better than adults do! I was the one that was going to

teach them sports because their dad is a computer geek. Now I can't

do that. I can't even take them on vacation because I can't do it

myself. It really does suck. But I don't believe God doesn't like

you. It is so frustrating to understand why this is happening, but

I just try to believe that it isn't GOod or Bad, it just is. And no

one did this TO us, we just got it because....and I think someday we

will know the because. I used to tell my Brain Injury Group (they

thought that was what it was for 2 years) that it is just God

bonking us on the head to slow us down to everyone else's level! I

don't know the reason, but I decided that isn't important. Just

trying to live with the most quality of life that I can is the most

important thing. And using it to help my daughters understand about

kindness, compassion, and appreciation for what they do have. Not

always an easy task, but that is my goal!

You didn't mention if you have a wife. I know a lot of people have

someone close to support them. I don't, but I do the best I can

with what I have. If you do have a wife or someone that is close to

you, there is a booklet called " But you Look Good " or something like

that. It is a couple of bucks I think but it is really good to help

them understand what it is like.

Well, anyway, you will learn that I ramble when I have a good day,

and I am not around much when I don't. Welcome to the group. You

are in a great place. I just found it in March and already feel so

supported and loved! These guys are great!

Welcome,

>

> Hello out there. My name is Jeff Quick, I live in California and I

> have neurosarcoidosis. I have been awear of this for about 2 years

> now. I am 34 years old with 2 daughters 6 & 1.

>

> I have no feeling from my waste to my toes. I have very bad back

> pain all the time, bad eyes, headaches, fevers and chills.

Basically

> I have it all. I spend most of the time in the wheelchair, so that

> sucks. And of coarse I have gotten Fat.... I have been to every

> doctor and tried alot of medication and nothing has worked. I

think

> it actually made me worse. I have had about 10 visits to the

> hospital for everything. My longest stay was 2 1\2 weeks. No fun..

>

> Yes I have a hard time with this everyday. I really think god

> doesn't like me. I am mad, fustrated. I cannot play with my kids.

I

> was active with 17 years of soccer and then coached for 5.

Softball,

> And my favorite was waterskiing.

>

> Of coarse I am on SSI and everybody knows that is a pain in the

butt

> amd you don't want me to get started on Medi-Cal. What a F__King

> joke that is. Thank you for your time. Jeff