Re: Scleroderma(OT)and a MOAN

[Guest guest]

In a message dated 04/19/2000 10:43:48 AM Eastern Daylight Time,

bunnykinsfan@... writes:

<< I know My Problem Is NOTHING Compared to s-But I feel so

Annoyed! >>

Janet,

you have just been told that you have what can be a very scarey condition and

have every right to be scared, mad, and whatever you need to be.

But more than anything right now, you need information.

Barb

who is asking for info from medical professionals on another list and will

send whatever I find

[Guest guest]

from just a quick aol search

<A HREF= " http://aolsearch.aol.com/cat.adp?id=58525 " >AOL Search:

Health>Conditions and Diseases>A>Arthritis>Scleroderma</A>

ITEMS IN CATEGORY SCLERODERMA

I Have Scleroderma

Personal stories of people affected by scleroderma and links to more

information.

http://www.ihavescleroderma.com/rings.htm

Rhode Island Scleroderma Support Group

For scleroderma patients and their families in New England and elsewhere.

Support, information, events, links, and scleroderma research fundraisers.

http://www.angelfire.com/ri/scleroderma

Scleroderma

One person's battle with scleroderma, with information about the disorder.

http://www.angelfire.com/fl2/scleroderma

Scleroderma

Basic information on Scleroderma, stories from site visitors, pictures,

voting booth, treatments.

http://homestead.com/Scleroderma/Scleroderma.html

Scleroderma from A to Z

A major resource for Scleroderma medical and support information, with 200+

pages and 800+ links. Scleroderma symptoms, treatments, clinical trials, and

worldwide support group listings.

http://www.sclero.org/index.html

Scleroderma treatment, prevention and much more

A wide range of helpful Scleroderma information concerning treatment,

prevention, diagnosis, email groups, support groups, personal stories and

much more. Updated regularly.

http://www.healthlinkusa.com/Scleroderma.htm

SD World

An email list for those with scleroderma and other autoimmune disorders to

gather in a warm, friendly, upbeat forum to exchange thoughts, Ideas and

information.

http://www.sdworld.org

Surviving Scleroderma

Many Scleroderma patients suffer from Raynaud's Phenomenon. Learn more about

this condition, including how to ease discomfort! Message Boards

http://www.sclerodermasupport.com

The Michigan Scleroderma Page

Scleroderma support information, Chapter listings and Scleroderma Registry

for the Michigan office.

http://www.tir.com/~silonet/homepage/semsf/semich.htm

The Scleroderma Foundation

National nonprofit health organization with 14,000 members, dedicated to a

three-fold mission of support, education, and research to help fight this

challenging autoimmune disease.

http://www.scleroderma.org

The Scleroderma Research Foundation

To find a cure for scleroderma, a life-threatening and degenerative illness,

by funding and facilitating the most promising, highest quality research and

placing the disease and its need for a cure in the public eye.

http://www.srfcure.org

[Guest guest]

In a message dated 4/19/00 10:43:49 AM Eastern Daylight Time,

bunnykinsfan@... writes:

<< If ANYONE Has any Info on this I Would REALLY Appriciate Them letting

me Know.

Sorry to moan on so Much-God! I am so Full of self pity Hey?

Or is that My Mother Talking?

Thanks all

Janet >>

I am so sorry Janet. You are not full of self pity! You just received a

shocking diagnosis. It is normal to be angry, sad and scared. I am not sure

what scleroderma is so I can't help with any information. Please let us all

know what the specialist says. Have you looked it up on the web? Hang in

there and give yourself time to process all of this. Please know that you can

post here with your feelings anytime and we will all listen!

[Guest guest]

Janet, please feel free to post about your condition and doctor visit.

Of course you feel upset. I don't know anything about scleroderma. I

hope it's treatable. It is terrifying getting a diagnosis like that

when you didn't expect it. Hang in there and let us know what the

specialist says.

Elena

[Guest guest]

Janet

*Hug* *Hug* *Hug*

I think you have the right to wallow in self-pity for a while, especially if

you don't know what this news implies regarding your life and family.

So go ahead & wallow, but just for a while ;-) you need it.

I don't know anything about this disease, but will check it out with you.

I know you'll cope, and we're here to help, none of us want to lose the

Janet that makes us laugh and we're so very fond off, who's going to

help me teach these 'Yanks' our more colourful sayings and words?

Take care *HUG*

Jill

Scleroderma(OT)and a MOAN

Hi all,

I hope you don't mind my posting about this,But! I need to Get it

out--I have Visualised Telling my Mum-and Sister,But To be

honest-They

would turn it around and Bring up something the matter with them,so I

don't want to..

You wouldn't know-But! about 2 years ago-I started with " white Finger "

For a long time-It was Highly amusing to see mY fingers go Multi

Coloured-

It didn't hurt and At the worst just felt tingly! so! I didn't " do

anything " about it-In fact the Cases were so few and far Between,It

must have taken me till Last Summer to realise I Had a

CONDITION,when it started occuring in hot weather too.

At the gym-I would get Numb Toes-And so Changed My Trainers 3

Times-Before I realised it wasn't The Training shoe But Me!

I realised things Had Got FAR WORSE When Whilst Cutting raw chicken

at

Work-I could no longer feel either hands,they were so numb with cold

and that they were starting to go blue now.

I Had Read about Raynauds and so Trooted off to the Doctors-Just to

let him Know!

This was about 1 month ago-and he Put me on Tablets for Angina,that

Block the Amounts of Calcium in the Blood vessels and so Allow a

Higher Pressure of blood flow..Then Said He wanted to run some blood

Tests as He felt the occurances were far more Linked to a Secondary

Raynauds than A Primary

In Short-He felt my Raynauds was a Symptom of an Underlying illness

and Not an illness on its Own!

I thought otherwise,and so Haven't been at all worried about the

results-in fact i should have gone back 1 week ago-But didn't go till

today-I WAS SO very Confident that they would all be 100% in my

favour!

Since doing tae-bo I have felt Wonderful-I even Bounded in there all

smiles and joking how " Coming here is great Birth control you know! "

as there was a Mother and Child Session on! LOL

he seems rather solemn but I dismissed it!

The Only Thing I can say about myself lately is that I HAVE Been

tiring alot quicker-But Initially have more energy-i.e-Can Do the

advanced-But Be tired by Noon-But Then can FIND The energy to Tae-bo

after Tea once I had had a Rest! also! I have been Getting alot of

pain in my hip--put that down to Pre-menstrual Pain ,and since I was

Menstruation free for so Many years Due to Endometriosis,HAD To think

along those lines!

I am sorry--all this Is Probably Irrelavent and You are Probably

Bored

alreday

so! I walked into his Office,and Smiled and Had a Joke-and He said he

Hadn't Got all The Results in the PC-And Nipped out!

When he got back-I said-Its all Okay then? Everythings All right?

he Told me my Urea was Very Low! I Looked at him Puzzled and so He

explained that My Kidneys were Good-GREAT !

The Lupas Result was Good--I breathed a Sigh of relief

He said something else was Good-Blood Count Great considering I don't

eat Red Meat-LOL-I asked about Rhumetoid Artharitus(sp)nad mentioned

my Hip and Finger Joints and then He Dropped it--

My Anti-nuclea Results were Something

I said-So! Its all Okay Then? Dim Or what?

and he said-No! Janet! Its Not okay-But I need to refer you to a

Specialist in the area--I Had Obviously Missed something..and then He

said I had The 1st Stages of Scleroderma

I said-I am Going to get Red and Scabby?

I am sorry if Anyone has This-But I have only Ever seem Old People

with skin like this-and seen Photos on the web

He Couldn't tell me-How This May affect me,When it will flare up!

what

I can do to Prevent it as He says there are only about 3,000 People

diagnosed with it in the UK And so it is Quite Rare.

I am So Angry everyone-I quit Smoking,Came off the Contraceptive

Pill-even Gave up The St s Wort so that I only took in Food and

water --and Every now and then I take a Course Of Vitamnins

My diet Is GREAT-Even if I do say So myself..AND I exercise and do

Tae-bo,I suppose If I didn't do all this It could be worse and I may

Have lost Some Fingers By Now!? I don't know-

I even Told the Doctor I Felt- " pissed off " about It!

He has NEVER Heard me swear before-and I don't know what He Thought

I know My Problem Is NOTHING Compared to s-But I feel so

Annoyed!

i keep getting all weepy,But Have only had a Good Cry over it

once,Because I keep thinking-Oh! well! This is what I have,I have

toMake The Most Of My Life Now-and Work WITH It!

I don't know!

Maybe I am Feeling sorry for Myself-I Know so little of this

condition.

Maybe If I can Find out More I will feel Better--Like--Is it because

I

Moisterise Morning and Night that My Face isn't like the DOCTOR

Thought it Would be--dry and Scaly and Inflamed?

Anyway! At least It explains why I have been so VERY Weary and easily

tired in the last 2 months..Apparantly That is a Sympton(I Found One

site That is the Raynauds and Scleroderma Society in the UK)

Ok! I will finish Now

If ANYONE Has any Info on this I Would REALLY Appriciate Them letting

me Know.

Sorry to moan on so Much-God! I am so Full of self pity Hey?

Or is that My Mother Talking?

Thanks all

Janet

As Deb has said: " Fitness is a journey and it begins with the first step. "

Visit our new vault site http://taeboon.isportsdot.com/

[Guest guest]

> Sorry to moan on so Much-God! I am so Full of self pity Hey?

(((((((Janet)))))))

Can you feel my hug all the way from here? You are not full of self

pity....you have just received some very shocking news and you are

just trying to process it all. I don't know anything about

scleroderma, so I'm sorry I can't help you with that. But, please

feel free to come here any time to vent, cry, moan, yell....whatever

it is you need to do! We are here for you!

[Guest guest]

In a message dated 4/19/00 9:44:12 AM Central Daylight Time,

bunnykinsfan@... writes:

<< said I had The 1st Stages of Scleroderma

I said-I am Going to get Red and Scabby?

I am sorry if Anyone has This-But I have only Ever seem Old People

with skin like this-and seen Photos on the web

He Couldn't tell me-How This May affect me,When it will flare up!

what

I can do to Prevent it as He says there are only about 3,000 People

diagnosed with it in the UK And so it is Quite Rare.

I am So Angry everyone-I quit Smoking,Came off the Contraceptive

Pill-even Gave up The St s Wort so that I only took in Food and

water --and Every now and then I take a Course Of Vitamnins

My diet Is GREAT-Even if I do say So myself..AND I exercise and do

Tae-bo,I suppose If I didn't do all this It could be worse and I may

Have lost Some Fingers By Now!? I don't know-

I even Told the Doctor I Felt- " pissed off " about It!

He has NEVER Heard me swear before-and I don't know what He Thought

I know My Problem Is NOTHING Compared to s-But I feel so

Annoyed!

i keep getting all weepy,But Have only had a Good Cry over it

once,Because I keep thinking-Oh! well! This is what I have,I have

toMake The Most Of My Life Now-and Work WITH It!

I don't know!

Maybe I am Feeling sorry for Myself-I Know so little of this

condition.

Maybe If I can Find out More I will feel Better--Like--Is it because

I

Moisterise Morning and Night that My Face isn't like the DOCTOR

Thought it Would be--dry and Scaly and Inflamed?

Anyway! At least It explains why I have been so VERY Weary and easily

tired in the last 2 months..Apparantly That is a Sympton(I Found One

site That is the Raynauds and Scleroderma Society in the UK)

Ok! I will finish Now

If ANYONE Has any Info on this I Would REALLY Appriciate Them letting

me Know.

Sorry to moan on so Much-God! I am so Full of self pity Hey?

Or is that My Mother Talking?

Thanks all

Janet >>

JANET I HOPE THIS WILL HELP HAVINF LUPUS I KNOW IT IS DIFFICULT TO HEAR AND

ACCEPT A DX ON AN ILLNESS SCLERDERMA SOUNDS ALOT LIKE DISCOID LUPUS TO MY

AMAZMENT I WOULD OF THOUGHT YOU WERE DECRIBING LUPUS .... IF THERE IS

ANYTHING I CAN HELP WITH OR A QUESTION I MIGHT BE ABLE TO ANSERW OR GET AN

ANSERW FOR YOU PLEASE DONT HESITATE TO ASK AND BY ALL MEAN ASK QUESTIONS ITS

THE ONLY WAY TO UNDERSTAND I KNOW I LEARN NEW THINGS ABOUT LUPUS EVERYTIME I

HAVE A FLARE UP SO IT IS NEVER THE SAME ILLNESS JUST KINDA EVOLVES... IF YOU

CAN BELIEVE THAT

I HOPE YOU ARE ABLE TO GET TO THE LINKS IF NOT LET ME KNOW AND I WILL COPY

AND SEND TO YOU

<A HREF= " http://homestead.com/Scleroderma/Scleroderma.html " >Scleroderma</A>

<A HREF= " http://www.sclero.org/index.html " >Scleroderma from A to Z: Welcome</

A> <A HREF= " http://www.healthlinkusa.com/273feat.htm " >Scleroderma;

Treatment, Prevention, Cure</A> <A HREF= " http://www.sdworld.org/ " >Scleroderma

World</A> <A HREF= " http://www.sclerodermasupport.com/ " >Surviving

Scleroderma - Home Page</A> <A

HREF= " http://www.angelfire.com/sys/popup_source.shtml?Category= " >sclerod2</A>

ROMIE

MY EMAIL ADDIE IS : FRCHYFREY@...

[Guest guest]

In a message dated 4/19/00 9:43:47 AM Central Daylight Time,

bunnykinsfan@... writes:

<<

Moisterise Morning and Night that My Face isn't like the DOCTOR

Thought it Would be--dry and Scaly and Inflamed?

Anyway! At least It explains why I have been so VERY Weary and easily

tired in the last 2 months..Apparantly That is a Sympton(I Found One

site That is the Raynauds and Scleroderma Society in the UK)

Ok! I will finish Now

If ANYONE Has any Info on this I Would REALLY Appriciate Them letting

me Know.

Sorry to moan on so Much-God! I am so Full of self pity Hey?

Or is that My Mother Talking?

Thanks all

Janet

>>

Janet, by all means honey go ahead an moan with us...as omie (my

sister-in-law) and I can tell you we have had our fair share of health

buggers in the family and all that testing and stragne symptoms and not

knowing and knowing too much can tie your stomach into knots and your worst

fears into an almost reality. But there is good news...you know what you

dealing with, so the next step is to fight it. Of course the fbest thing in

fighting anything is good health habits like you have adopted so be thankful

for those and the other most important thing is forgiveness of your body.

There are very few people who have perfect functional bodies that never fail

us so when something fails don't get frustrated and curse up into the sky

about why God might of done this to you, just forgive it and go on. Try not

to focus on it. Somehow wheneverI focus on an ailment it becomes bigger and

occurs more frequently, and then of course my world caves in and I'm panic

stricken. I can't say that I know what you are going through at all, but I

do know that stress only aids a disease's fight against your body.

Here is a website you might want to checkout:

http://www.sclerodermasupport.com

Please feel free to vent to us anytime, it is understandable that you are

angry but please try to stay positive when the anger subsides.

Hugs