Re: Pain, Sickness, and Job issues - to

[Guest guest]

Hi, . I saw Gretchen's reply to you and thought I would add my

two cents worth. I don't how old you are but I was able to work

until I was 50, although I was in pain for many of those years. I

have 4 family members who also had CMT and they laster about 5 years

longer than I did. They were very sedentary and in my younger years

I felt it would be better to be very active. During my life I

jogged, bicycled, swam, hiked, etc. and " bore through the pain " .

I now think that was a big mistake. I didn't know that I had CMT but

I knew there was a 50% chance of having it. It is possible that I

actually did more damage than if I had " moderately " exercised. When I

reached 48, my body just started shutting down and everything hurt.

Anyway, that's my tip. As you live and work, pace yourself and if it

hurts, don't do it, either in work or play.

What you need is an organization that is committed to helping the

disabled, like Microsoft or Bank of Ameria for example. Good luck,

if you can physically work, I am sure you will be able to find

something you can do.

Alan

>

> Okay, I'm a little nervous about asking this, but I want some of

your

> opinions .. I am concerned about holding/keeping a job .. since I

> get sick a little too much .. What should I do about this? How am I

> going to have a job if I get " sick " too much? I do need money, and I

> am sitting here trying to decide what is best since I have this

> condition.

> What are my options? Sometimes nothing much will help this pain for

> some reason, and I just can't go out of the house when it happens,

> and it's happening more frequently...

>

> Any help would be appreciated.

>

> -

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[Guest guest]

Hi, Alan,

Thanks so much for the reply. I'm 21 years old, actually. (22 in March)

Well, I'm definately learning to try and pace myself, that's for certain!

I do have another question, though. How much is too much when you can't

feel any pain til' you wake up the next day? I realize it then!

I didn't know Microsoft and Bank of America helped disabled people.

Can you tell me anything more about this? I'm curious.

Thanks for your " two cents " . They are worth more than that.

-

On Tue, 16 Oct 2001 06:10:25 -0000 atucker2567@... writes:

> Hi, . I saw Gretchen's reply to you and thought I would add my

>

> two cents worth. I don't how old you are but I was able to work

> until I was 50, although I was in pain for many of those years. I

> have 4 family members who also had CMT and they laster about 5 years

>

> longer than I did. They were very sedentary and in my younger years

>

> I felt it would be better to be very active. During my life I

> jogged, bicycled, swam, hiked, etc. and " bore through the pain " .

>

> I now think that was a big mistake. I didn't know that I had CMT

> but

> I knew there was a 50% chance of having it. It is possible that I

> actually did more damage than if I had " moderately " exercised. When

> I

> reached 48, my body just started shutting down and everything hurt.

>

> Anyway, that's my tip. As you live and work, pace yourself and if it

>

> hurts, don't do it, either in work or play.

>

> What you need is an organization that is committed to helping the

> disabled, like Microsoft or Bank of Ameria for example. Good luck,

>

> if you can physically work, I am sure you will be able to find

> something you can do.

>

> Alan

>

>

>

> >

> > Okay, I'm a little nervous about asking this, but I want some of

> your

> > opinions .. I am concerned about holding/keeping a job .. since I

> > get sick a little too much .. What should I do about this? How am

> I

> > going to have a job if I get " sick " too much? I do need money, and

> I

> > am sitting here trying to decide what is best since I have this

> > condition.

> > What are my options? Sometimes nothing much will help this pain

> for

> > some reason, and I just can't go out of the house when it

> happens,

> > and it's happening more frequently...

> >

> > Any help would be appreciated.

> >

> > -

> > ________________________________________________________________

> > GET INTERNET ACCESS FROM JUNO!

> > Juno offers FREE or PREMIUM Internet access for less!

> > Join Juno today! For your FREE software, visit:

> > http://dl.www.juno.com/get/web/.

>

>

>

[Guest guest]

Hi, . Ah, to be 22 again, or 32, or even 42...

I hope this is the only copy of this reply that gets posted, this is

the third time I've tried, each time I lose my connection. Looks

like the connection has settled down now.

Now that you mention it, I do remember going through a stage where I

could be active and did not have constant, acute pain at that time,

but I would pay big time for it the next day. I tried keeping a

detailed log of what I did each day, how long I did it, and what the

results were the next day. Eventually, I was able to figure out

approximately where that " invisible " line was. Then I was able to

stop logging everything (it was a lot of work).

Re work, I was a computer trainer for several years before I stopped

working and worked closely with Microsoft and Bank of America. I

found that they welcomed people with disabilities instead of seeing

them as a problem. Evidently, these companies have a policy of

making this a priority and their managers are trained to follow that

policy. Until recently, one of the senior Vice Presidents at Bank of

America was a man with ALS. He could barely speak and could only

move his fingers, using a fancy power wheel chair with a computer to

communicate with people.

I see that Gretchen has posted a list that will perhaps help you to

identify companies like this. As much as you can, " network " with

people through church, clubs, forums, etc. If a hiring manager knows

someone who can give you a personal reference, you are miles ahead of

just answering ads in the newspaper.

Let me know how things go. If you are employed, there are laws

requiring employers to make " reasonable accommodations " for diabled

employees. I wish you the best, I know how tough it is.

Alan

> > >

> > > Okay, I'm a little nervous about asking this, but I want some

of

> > your

> > > opinions .. I am concerned about holding/keeping a job .. since

I

> > > get sick a little too much .. What should I do about this? How

am

> > I

> > > going to have a job if I get " sick " too much? I do need money,

and

> > I

> > > am sitting here trying to decide what is best since I have this

> > > condition.

> > > What are my options? Sometimes nothing much will help this pain

> > for

> > > some reason, and I just can't go out of the house when it

> > happens,

> > > and it's happening more frequently...

> > >

> > > Any help would be appreciated.

> > >

> > > -

> > > ________________________________________________________________

> > > GET INTERNET ACCESS FROM JUNO!

> > > Juno offers FREE or PREMIUM Internet access for less!

> > > Join Juno today! For your FREE software, visit:

> > > http://dl.www.juno.com/get/web/.

> >

> >

> >

[Guest guest]

,

I see you have gotten two cents here and there, you are so fortunate to have

people to help you understand through their own experiences. Just remember,

there are times we just don't realize that we did too much, or our mood or

stress level can effect what we can and cannot do. Less stress, the better I

feel, also the weather may play a roll, the wind effects me, the rain and the

cold.

I am in the process of looking into moving south. I want so much to stay

where I am for my 12 year old. It will be well thought out before I do

anything. I am thinking about going to an internist here that I heard

specializes in Fibromyalgia. Maybe he will take my information and come with

me on this ride. I am sure with the proper information he can assist me with

both that and the CMT. I would like to hang in here for her if I can.

Brittany is an " A " Honor Roll Student in the 7th grade. She is a pier leader,

a cheer leader, plays soft ball, takes jazz dance classes and has a very busy

social life. She has been very fortunate to have good friends that have been

around since birth and then most since preschool.

We live in a small town at a beach resort in Delaware and I fear moving her.

Her father is a Delaware State Policeman and she sees him about one a month

or so. Getting busy with a social life with slumber parties, football games,

movies, skating and hanging out with me.

I too have been here since I was 19 and I love it, I was a wild little beach

baby years ago and I want her to have the healthiest, most fun that she can

have and experience all she can, while she can. I am afraid she shows signs

of it in her feet and she complains often of hurting, but she rubs it with a

melaluca cream called painatrate. It does help her, I use it quite often

myself. I should take out stock in it.

I hope that you can find the type job that will be suitable for you and you

will be comfortable, treated nicely and you enjoy it. Best of Luck, I will

put you in my prayers.

PS I am looking at Albany Georgia, anyone know anything about the area?

Love to hear from you if you do!