Re: Acceptance of disability--return reply

[Guest guest]

In a message dated 11/15/99 10:43:46 AM Central Standard Time,

ladydi@... writes:

<<

Ray in Virginia wrote:

>

> How do you deal with the fact that you are ill? How do you deal with the

> fact that chronic pain debilitates you, preventing you from living life the

> way you would rather live it? Has your disability lowered your

self-esteem?

> Do you feel less of a man, less of a woman, when others know you are

> disabled by chronic pain and other disease symptoms? Bottom line? Have

you

> truly accepted life as it must be lived with chronic pain, etc.?

>

> This is a rather difficult time for me. I'm revisiting the grief of

> realizing how limited my life is compared to how it was before the pain

> became so debilitating. New symptoms have complicated life for me.

Chronic

> fatigue has drastically changed my life. Memory loss, i.e., what we

> jokingly refer to as Brain Fog, has become acute.

>

> Tomorrow I talk to my lawyer about applying for disability benefits. I

> haven't earned more than $2,500.00 a year in over five years. I feel like

> I'm giving in and giving up the fight against RS, Sjogrens Syndrome, and

> probable Fibromyalgia.

> I don't want to feel that way.

>

> I am not asking for sympathy. Rather I'm seeking your own story about how

> you have accepted your limitations and still live a good life. For many of

> us life isn't very joyful much of the time. So how have you found joy in

> the midst of defeat?

> How have you accepted living with your disease and the pain?

> Life goes on...

> Ray

>

>>I have been fighting the system for a very long time, the system to get

benefits from Social Security Disibility Income. In the last 7 yrs I have

applied for benefits for the 3rd time now. I suffer from FMS/MPS/CFIDS,

SEVERE/CHRONIC ABDOMINAL ADHESIONS my body recreates and rebuilds the scar

tissue and addhisions until there is no room, and then they rip/tear and

repeat this procedure continuously forever, when they rip/tear, they burn and

feel like a very sharp knife is cutting my abdomin into shreads./INSOMNIA/ I.

C. Interstitial Cystitis, which sappose to be a debilitating disease w/o a

cure. It affect the bladder- for those of you who are not familure with it.

Eventually the substance the keeps the bladder soft/exspandible turns to a

substance like beef jerkey, which is non-exspandible again, the only possible

solution is surgery to replace a piece of the bladder with something that is

pliable, but it will only last a short time. Then the next step is complete

removel and wearing a bag. BUT ONCE THE ONSET OF I.C. THE PAIN CONTINUES TO

GROW ON A REGULAR BASIS, AND IS UNBEARABLE 99.9% OF THE TIME. THE PAIN IS

USUALLY LOCATED IN THE LOWER LEFT HAND SIDE./I ALSO HAVE SEVERE/CHRONIC

OBSTRUCTIVE SLEEP APNEA, AND DIABETES, right now at this point that is all

the diagnosis I can think of at this time besides the SIDE EFFECTS THAT GO

ALONG WITH SO MANY OF THE THINGS LISTED ABOVE LIKE T.M.J./CONSTANT MUSCLE

SPASMS

JERKING, AND TWITCHING THAT AT TIMES NOT ONLY DO THE KEEP ME AWAKE BUT I WAKE

MY SPOUSE.

My problems have progressed over the last 16+years,continually getting worse

and my losing out on more and more of be a part of my childrens life growing

up. Whe my oldest played her first year of soccer, the pain wasn't so

unbearable that I couldn't be a coach for her team, Being a part of her life

make the suffering worth it. But that was the last year I was able to do it,

fortunately my husband was able to take over. This was about 10 yrs ago maybe

12, but at that point I spent my time usually being pretty much out of it due

to pain meds. More and more, my body hurt so bad that it hurt to be touched,

lightly enough to be given a hug goodnite from my children, BUT, I could

never tell them that, however my spouse and I can no longer be intimate,

because of the pain from, it has been 4 years that due to pain the moments

can be counted on one hand. But I must say God couldn't of given me a better

spouse because, he waits on me hand and foot. When the stairs were to much

for me, he took over laundry/ironing, and while I was still trying to work,

when I would drag myself in the door dreading the thought of have to make

dinner, he would have if done and on the table, and as I walked in the door

He would have a nice tall glass of coke to hand to me. (this was before we

knew about the diabetes).

Today I called the Social Security Offices to see if they had recieved

everything they needed this time around, and what the status is on my claim

at this point. I was told that a decision was made as of yesturday, BUT, I

would not know that decision for up to 60days, I couldn't believe it, she

says they have a review board that goes through the one with recent decisions

and they pull some at random to make sure that everything that could be done

by the S. S. Office to process the claims, in the mean time, I continue to

rob peter to pay paul. I've been trying so hard to be positive due the the

fact the everyone says the 3rd time is a charm. I don't know if I can handle

a 3rd rejection, I've done everything they told me to over the years. I've

tried jobs that require different levels of physical abilitys, and because I

can not sit for more than a 20-30minute period before the pain begins to set

in and it rapidly grows to be very intense, the same with standing for long

perionds for like sales jobs, My original job when all of this began to

afflict me was a cake decorator for one of the larger grocers. If I were

still able to be there I would be making $17.00hr minimum, and that just

makes me sick, when I think that my health may cost my kids a college

education. I want so much to be able to give my kids the best start into

adult-hood that they can get in life. I've missed so much of everything

else. Not only can I no longer try and coach any of their soccer teams, but

the way I have 3 kids (10.15.19), in the last few years I haven't even been

able to go and sit out at the fields to watch them play and cheer them on and

meet the rest of the parents. I can't even imagine what the other parents

must think about my never showing up. Not to many people really know what is

going on with me. My kids didn't even know until we could no longer hide it

from them. Then just recently we went thru a real bad bout with the eldest

my daughter, she was always very nasty to me, I could never get her to take

the time and just sit down with me and tell me about her day, (this came on

over about a 3-4months span) then she got to the point that once she turned

18yrs, she just quit coming home. she would just call and say she was staying

with a friend so that it would be easier to get to school. Finally when my

heart felt like it had truely been stomped on more than once with the way she

spoke to me. the more I thought about it and watched her with everyone else,

she was normal with them, but it was like she was building a wall between us.

So I figured as the mother I had to be the back bone and take the bull by the

horns, and I sat her down, explained to her what I had beem noticing, and how

much I was hurting inside. I told her that regardless of how she truely felt

about me, because I thought that maybe my ailment were embarrassing. Come

to find out when we were done talking, she was afraid to get close to me,

because she said that if she did then for sure I would just die that much

sooner, so by not being close to me, she thought I would live longer. I

simply explained to her that only God knows how long we all have here on

earth, and our job is to make the best of every day he gives us, then if we

do that we have nothing to regret when something should happen to us. I say

that from the heart because that is how I lived my life when it came to my

Dad, there wasn't a day that went by that I didn't tell him I loved him,

hugged and kissed him good nite. Now my brothers (4) all seemed to think

that is wasn't very manly to show such affection, but they found out the day

he died unexspectedly, that not have done it HURT SO MANY TIMES MORE, if fact

I got my spouse to make it a point to tell his Dad he loved him every time we

came and went, and on the rounds of hugs and kisses Greg didn't forget his

Dad. His Brother Bruce even caught on after watching Greg, and started, this

put this father in 7th Heaven, during those last hard and suffering years of

his life. The Best thing I can say after writing this book is that living one

day at a time to the best of your ability, and don't be stubborn like I was a

first as for help. When you go to the grocery store, grab one of the

motorized carts and save the leg muscles for something else. Get the sackers

to carry out your bag or bags if you are alone, just explain that you are not

to lift over 3-5lbs for health reason, then you save the strength in you arms

for giving a hug. Unfortunately there isn't much we can do for the fact that

our entire bodies feel like massive bruises. But just work on gentle

butterfly hugs, or something.

Also one thing I feel that I learned the hard way is to tell the kids the

truth straight from the start, then they won't be trying to fill in the

blanks when they over hear a partial conversation. Be honest with them so

that they don't have any hidden anxieties, that will affect them in another

manner, like school, or their sleep. I'm talking about kids that are say 8yrs

or better

and alot does depend on their maturity.

As for myself I have tried to find things that I can do, like a craft, It

might take me three times longer than the normal person, or even longer,

because I can't sit, stand, or even lay for long periods with out a lot of

pain

but I'm not competing against anyone so it doesn't matter. I like to take

pictures of my kids, and them having fun with friends. Then I make scrap

books out of the pictures. This is something that can be done over the YEARS

so that when they get married you have something special to give them that no

one else will probabily think of. I tried to spend time with my Grandmother,

since I never really got a chance to know her when I was little, so this has

become a special time for both of us. There is still a few days that I do

okay driving, exspecially since she and my Mother and eldest brother live

close by. We have dogs that I love with all my heart,and they actually help

take care of me on bad days when I can't walk. In fact I had just sent out a

prayer request for my lger dog Missy becuz she had to have a major-surgery,

they had to remove her kidney/spleen becuz it was covered in cancer. And she

just showed signs of being sick in the last 2wks.

Earlier today, I took her back to the vet so she would not have to suffer any

longer, So she took her trip to rainbow bridge where she can play happily

with her two other doggy friends Fluffy and Bandit.

I apoligize for making this so long. I hoped that some how one of my answers

are able to help atleast one person. Just remember when we all get down and

are depressed beyond our belief, that we are never alone, never alone. I

tend to spend a lot of time on line and I would love to get to know all of

you, and be able to share some strategies, and be a shoulder to lean on for

the other when we need to talk to someone who knows how we feel and can

understand what we are going through. I think thats the hardest part is

that, not having anyone to really talk to. I know I'd love to be able to

share battle stories with someone who understands, when it comes to dealing

with employers, kids, spouses, family (who don't understand and don't take

the time to try), friends (thats a good one for me, the one friend that I

thought would be a friend forever, got tired of my not being able to keep up,

or that I couldn't shop for an entire day w/o a lot of rest somehow. Well I

did it again I rattled on, again I'm so sorry,

but you all take care and I wish you all better days ahead.

God Bless You and Your Family Today and Always,

Your Sister in Christ,

Trish /TDBEARANGL@...

[Guest guest]

At 02:15 AM 11/17/99 -0500, TDBEARANGL@... wisely said:

>I have been fighting the system for a very long time, the system to get

>benefits from Social Security Disibility Income. In the last 7 yrs I have

>applied for benefits for the 3rd time now.

TD,

Your situation is overwhelming & tragic, & you need not apologize

for telling us about it. I would like to offer more support than the few

electrons in this message, but that's a constraint of computer

communication. But please believe I (and probably the others here)

understand the profound distress you are in.

There are help resources with SSD cases. I work on appeals myself,

as this is part of what I was doing professionally before I became more

disabled. Tell us a little more about the help you are/are not getting with

your case. Please respond on the list, or to me directly. There may be more

hope than you have been given to believe.

Ken

----------

Turbin | Mailto:kturbin@... | webmaster@...

Net Biz Development | *Page me: http://www.mirabilis.com/17198172

Tel. (702) 312- 6888 | Fax | GetICQ http://www.icq.com/

[Guest guest]

At 02:15 AM 11/17/99 -0500, TDBEARANGL@... wisely said:

>I have been fighting the system for a very long time, the system to get

>benefits from Social Security Disibility Income. In the last 7 yrs I have

>applied for benefits for the 3rd time now.

TD,

Your situation is overwhelming & tragic, & you need not apologize

for telling us about it. I would like to offer more support than the few

electrons in this message, but that's a constraint of computer

communication. But please believe I (and probably the others here)

understand the profound distress you are in.

There are help resources with SSD cases. I work on appeals myself,

as this is part of what I was doing professionally before I became more

disabled. Tell us a little more about the help you are/are not getting with

your case. Please respond on the list, or to me directly. There may be more

hope than you have been given to believe.

Ken

----------

Turbin | Mailto:kturbin@... | webmaster@...

Net Biz Development | *Page me: http://www.mirabilis.com/17198172

Tel. (702) 312- 6888 | Fax | GetICQ http://www.icq.com/