Re: Stopping Work

[Guest guest]

Hi ,

I'm exactly in the same situation. I bartend and lost all feeling to my right

hand back in April, thought I had a stroke in my sleep, went to the er and the

dr. told me I had a nerve palsey and feeling would come back in a few days.

Well, month down the road, no go...I'm caught between a rock and a hard place, I

got the nerve conduction test about 2 months ago, now knowing I have CMT1 but

I'm 44, live by myself, and if I stop working, I'll be homeless.

Getting together my SS disability forms, my neurologist told my main dr I

was 100% disabled. I'm very bad at paperwork and don't want to screw up

anything on the forms. Any suggestions. You can e-mail me if you'd like. Good

luck to you.

[Guest guest]

Hi ,

Its kind of dejavu if you will. I came home early once again from work today

because the pain has been so great to endure. I am one who hates making

mistakes and I feel if I keep going I will make mistakes. ( Some that might cost

our company lots of money) I work in accounts payable. And also I am worried

about the money. Not so much about the money but insurance. I am on 10

different scripts, not just for this disease but other things as well. I also

have worked all my life since 16 (41 now) so I understand where you are coming

from. This group along with another group I am a member of really have helped

me along the way.

So .. you can vent all you want.. that is what we are here for.

Laurie

Unique to is our experiental sharing; " this is what works for me " ; all in

an upbeat and positive light.

members develop a positive quality of life, provide affirmation,

encouragement, inspiration, HOPE, empowerment, and practical suggestions. We

share information gathered from the medical community but MOST IMPORTANTLY we

share personal discoveries and insights that we've gained from living with CMT

[Guest guest]

Hi :

I truly understand what you are going through. At 55 I had to stop working

in February. Both my family Dr. and my neurologist advised me to stop

working. The pain and fatigue did not allow me to work a full day, and it

hampered my ability to perform my duties at work. I had a fairly senior

position at the telephone company I worked for (Director of Sales/Marketing

and Customer Care), and I realized I was " screwing up " at work.

For example, I was extremely forgetful, and my short-term memory was shot. I

would make a commitment to a customer, and then forget I had done so. I did

this more than once, and that is no way to function and treat customers.

With the help of my doctors, I applied for Disability Benefits in March and

I was approved. I received my first direct deposit on June 28, 2004. This is

all well and good, but financially I am down about $6,500 a month. Thank God

my wife has a good job (at the same telephone company), and is my best

friend and life partner. We recently down sized our home and vehicles, and

we still have a pretty good life.

I did not want to " retire " at 55 years young. I did not want to stop

working....I loved my job. Going on long-term disability was never an option

for me. But we can all live a good life, it simply depends on our attitude,

and ability to accept life on life's terms. Thank God again that I have

belonged to a 12 Step program for over 18 years. That program has taught me

how to accept life.

I have a picture above our bed, in our bedroom. It pictures clouds,

mountains, forest and a small island with their reflection on the smooth

calm lake in the fore ground. It has a great message across the bottom...it

says " Serenity Mirrors the Mind " .

My serenity today depends on how willing I am to accept life, exactly the

way it is, today, and at this very moment. Nothing in God's world happens by

mistake. I believe there is a God, and I also believe I am not Her or Him.

The only thing I can change in this world is me. I too have my good and bad

days now that I am not working. It has been quite a roller coaster ride

these past few months. This group does allow us to vent if we need to, and

share our experience, hope and strength with each other (for those who may

know, I know I stole those last few words).

Thank you for sharing with us today. I know it will get better for you. You

have already put your pride aside and shared with us today. Thanks again.

And for what it is worth, I once heard 10 small words that described how I

can develop a better attitude... " if it is to be it is up to me " . These 10

little words are now yours.

Good luck,

Beckingham

[Guest guest]

Hi ,

I'm getting to fill out my SS disability form and the neurologist did fax my

regular dr. saying I'm 100% disabled, but I did a phone thing with an SS

lady, and she mailed me what I had said, she asked if I can keep up with my

fellow employees, and I try, so I said just that, but I only work 20 hrs a

week now, and I'm going to re-do her reply, because I can't keep up (I just

try) and have to wear the hand brace. What can I do to make sure I don't

make any mistakes, I understand one wrong word and I'm screwed. I've had

this for 7 years (when my feet went bad), but just got officially diagnosed

a couple of months ago, should I say I had it all these years but didn't

know, or go with the final decision. Any help would be great.

Take care,

[Guest guest]

Your message was wonderful. I too am 55 and no longer working. I just keep

myself busy any way I can. It its meant to be, it well. If not, so be it. I

dont worry about tomorrow, or yesterday, I concentrate on today. Because

today is what counts. I get up in the morning put my feet on the ground and

say,

ok, today is today so be it. And take one step at a time.

My life has changed dramatically in the last 9 months and I have had to sell

my home and move in with family members. Not easy to do. But it works. I

cant worry about minor things and I also learned that to every negative there is

a positive.

Elaine

[Guest guest]

HI DAVE,

I CAN UNDERSTAND HOW YOU FEEL...I HAVE WORKED AT THE SAME JOB FOR 27

YEARS...IT IS MY OTHER MEDICAL CONDITIONS THAT ARE CAUSING ME PROBLEMS RIGHT

NOW, I HAD SLEEP APNEA WHERE I COULDNT SLEEP FOR DAYS AND MY COMPANY WASNT

VERY UNDERSTANDING....HOPEFULLY YOURS WAS....SORRY FOR YOUR ANXIETY AND HOPE

THINGS WILL TURN AROUND FOR YOU SOON...HOBBIES OR SOME FORM OF EXERCISE IF

MINIMAL MAY BE OF SOME HELP.

STEVE

[Guest guest]

Hi :

Since CMT is a hereditary disease, we all have it at birth. But many of us

are not diagnosed until later on in life. Once I found out I had CMT, and

what it was, it did indeed answer many problems I had earlier in life, such

as a lack of balance, sprained ankles all the time, and scoliosis to name a

few.

Regards,

[Guest guest]

Thanks alot ,

Can I ask you another question...I haven't filled out the SS disability

forms yet, and just got a bill from the hospital today dated April 26th,

this year, which is when I went to the emergency room thinking I had a

stroke because when I woke up I couldn't use my right hand AT ALL. I hear

horror stories about SS benefits, and don't want to mess up the paperwork.

I don work 20 hrs a week, I have to or else be homeless, and wear my hand

brace to work, which I know my bosses aren't thrilled about, because I'm

dealing with the public and it doesn't look GOOD FOR THEM...I just got done

talking to the nurse at my neurological dr's office, and she told me the Dr.

faxed a paper to my regular Dr. saying I'm not able to work (100%) disabled.

No, I can't keep up with my co-workers, but they are being nice enough to

put up with me. I have to use my inside arm to open things up and do slip

and trip when I walk, they just don't understand what I'm going through, and

to tell you the truth, most people don't care. They always say, " CARPAL

TUNNEL " ? I try to make the conversation fast because no one wants to hear a

long story (LIKE THE ONE I'M GIVING YOU...LOL....) Anyway, if you have any

suggestions please let me know. Thanks again,

[Guest guest]

Hi . I know what you mean. I stopped working about 3 months

ago. For the first month or so, it was just nice to have time to

relax and feel better. During the next two months, I started finding

all sorts of little things to do all around the house (I guess

because subconciously I felt I needed to stay busy, since I'm

accustomed to working every day). After I ran out of these piddly

things to do around the house, I got depressed for a few weeks. I

was thinking " what am I going to be doing every day from now on? "

Now I'm feeling better, I thought about how I used to clumsily hobble

into work every day and feel like crap while trying to use my mostly

non-functional hands/fingers to pound on a keyboard, etc. So,

comparatively speaking, things are so much better for me now

regardless of any work-related feelings I may have.

I found it useful to dedicate a certain number of hours every day to

doing something constructive. I think it's my need for

accomplishment, I hate just sitting around. I would recommend

getting the STD/SSDI process started ASAP, I felt way better about

things after I was approved and started receiving payments.

Rob