Re: I am new to this group and feel very much alone

November 22, 2004

Gale, this is JoAnn, I sign with s Momma under name as is my

daughter and she was diagnosed with RSD 8 years ago and was in very bad

shape for long time. She is still not very well. But I have the Fibro so

severe that it alone makes me permantly disabled, then thought what the

heck, and 2 years ago was told have rsd now in right foot/ankle and try with

blocks to keep it from moving up which does enjoy making my leg numb to see

how scared I get and must admit I do get scared when that happens.

I do not get on much anymore as where computer is hurts to much to be

on anymore so very frustrated as want to know how all are doing and be part

of the conversations. It is a big plus of getting my mind off and

myself.

You are one of the rare ones you know having family and plenty of

friends all this time. Alot loose the majority of their friends with not

being able to get out with them, and over time the calls slow down and the

asking if want to get together stops, so you are doing great having that

large a support system and very happy for you, know this must be such a

grand blessing you have each day.

Where do you live Gale? Always like to know, seems most on here that

write anyway, are in upper East Coast, so do we add you to that group also?

Fixing computers is a career would think you had to really keep up with

new changes made all the time, or did the components stay basically the

same? Have you had the blocks Gale, I do not know if you wrote about that

as at this time have 560 emails and wish the heck would take the time to get

them deleted.

My home email is

2xhawks@...

in case you would care to write me direct. Those I catch fairly quick and

if you have Fibro, heart troubles, Chronic Fatigue along with rsd, can help

you with those as the Fibro had now over 14 years. Hope you do not have it.

Last thing in my normal novels, the forgetting things is so normal. Do

not know any on here that do not find they are forgetful. Some is the

disease, some is meds on. So you are very normal in this, don't kick

yourself about it, it just is part of all your going through. Sorry my new

friend your having to experience this, but am thankful you found this group

as will have great support from those who understand, and that way not

having to try and explain the why's etc to family and friends.

Please take care and hope your day goes well.

JoAnn

s Momma

I am new to this group and feel very much alone

>

> I am sitting here at 4 AM reading some of these posts and crying. I

> have felt so alone. I haved been living this nightmare for over 2

> yrs. I was diagnosed with RSDS 6 months after carpal tunnel

> surgery. My symptoms appeared about a month after the surgery and I

> spent the next 5 months going from doc to doc trying to find out

> what was wrong with me. One doc got so frustrated with me that he

> tried to make me feel like this was all in my head. But it isn't, I

> hurt! I am currently on disability, a policy I bought thru my

> benefits at work. My carpal tunnel was work related. I fixed

> office equipment for 20 years using various hand tools. Now my

> employer is fighting the work comp. Their doctors are saying that I

> never had carpal tunnel in the first place. Apparently I had my

> wrist sliced open for the hell of it. My docs are the ones who

> diagnosed my carpal tunnel and recommended surgery. My life has

> been hell since then. I don't blame the doc who did the surgery for

> this. I understand that RSDS is just something that happened. I am a

> little upset that it took them 6 months to figure it out and yet

> they are still not agreeing on it. I have concentration problems,

> which the docs say it not RSDS yet I read from these posts that it

> is common among the people here. I don't sleep, can't fall asleep

> sometimes, or wake up all the time. I manage my pain with Vicodin,

> it helps some but it never goes completely away. I have constant

> severe burning, electrical jolts, stabbing pain and spasms. I find

> that I mentally cut my right arm off and set it aside. I have tried

> various other meds but Vicodin seems to work the best. I have taken

> behavioral classes which have taught relaxation, physical therapy

> and coping skills. That has really helped. I see a therapist once a

> month, just to vent. I am fighting to keep my disability and am

> also trying to get SS. I have lost my job and don't see how I can

> even work at all. I have a 10lb weight restriction and limited use

> of my right arm. I am right hand dominate, so that makes it real

> tuff. I get tired very easy. If I have a decent day, then I overdo

> it and then down for a couple of days. My husband is very

> supportive but he is worried about the monies. We don't know month

> to month if I will get a check. During all of this my husband had

> surgery for prostate cancer and retired. My step-son was diagnosed

> bi-polar. My blood pressure is high and my stress is right up there

> also. I know that I am rambling, but I feel like I am wearing out

> my friends and family with this and really need to communicate with

> people who know what I am going thru. People look at me, I don't

> have missing limbs or any obvious problem. How can I be disabled?

> People don't understand what they can't see and they don't know how

> much I hurt, both physically and emotionally. I am so tired of

> this. I am stuck in the middle of the doctors and lawyers.I keep

> thinking I should go out and find a job. But who is going to give me

> a job where I can work when I want and not get upset if I am too

> tired and call in sick? I can't go back to my old job and I don't

> have a college degree to get something else. What I would like to

> do, I am not able to do. I would like to do something with computers

> but even trying this post is causing a flare-up in my arm. My lack

> of concentration is a real big problem. I leave the sotve and oven

> on. I am not comfortable driving somewhere I haven't been before. I

> tell my husband right when I mean left. I can't remember what I did

> yesterday. I use to have an excellent memory for numbers, no more.

> I got a PDA just to keep phone numbers, appointments and shopping

> lists. If I don't write it down, I will never remember it. My life

> is a mess. The one good thing is that I have many good friends. I

> can count on them for anything. They have been there for both my

> husband and myself. I know I am not alone, but it feels like it

> when they don't really know what it is like to walk in my shoes.

>

November 22, 2004