Introduction

[Guest guest]

----Original Message Follows----

From: bwalsh8@...

To: j_davis_27_@...

Subject: Re: Introduction

Date: Tue, 18 Jun 2002 23:08:12 -0700

Congrats Tani! I am not yet graduated from M-Tec but hope to be soon in a

couple weeks! Look forward to future posts from you...

Laur

On Tue, 18 Jun 2002 06:21:48 -0500 " J. L. "

writes:

Congratulations and welcome!

----Original Message Follows----

To: " N "

CC: <nmtc >

Subject: Introduction

Date: Mon, 17 Jun 2002 10:39:00 -0500

Hi! My name is Tani and I've been lurking on the list for a few weeks. I

just got the news this morning that I am an MTEC grad! I'll be looking

for

work starting today. It's all so confusing...different pay rates, etc.

I've enjoyed reading all of your posts and getting to " know " you. I think

that this list will become an important part of my life in the very near

future.

Tani Dean

MTEC grad!!!

[Guest guest]

, welcome to group. My name is Carol, I'm 43 I have been dxs with lupus, fibro, RA(rest of my joints), OA (knees), Bursitis (both legs), TMJ, Carpel Tunnel...hmm wonder if I for got anything...lol I"m trying to go for the whole alphabet...lol

Hope you enjoy the group. I love the girls and boys... love Carol

Introduction

Hi Everyone,

To my surprise-I'm a Lupie. My name is Marie, I'm 56, married twice and divorced, 4 grown children, 4 grandchildren, I'm USAF retired and retired Public Health Nutritionist, and I currently live with another woman. Neither of us plan to marry again, but don't want to enter our twilight years alone. Unfortunately a large % of us do find ourselves alone.

Lupus-what a surprise! I've had these rashes on my faces that continued to grow. I finally got a referral from my PCP in Dec '02 to Dermatology for Jun '03. But in April I really go frightened as more rashes appeared and I thought they were cancerous. I insisted on being seen by some one. I go to see this very nice lady family care doctor. She combed me down and told me I didn't have cancer. Good news I thought. But she sent me to the Lab for some blood tests. On May 7th I had a regular follow up with my PCP. She came into the exam room, looked up my record, turned to me and said, "I don't want to frighten you, but you have a connective tissue disease and it's most likely Lupus. You could have knocked me over with a feather. I didn't know what to say or even what to ask. I was completely ignorant to any of that. She made a referral to Rheumatology and told me not to miss my Dermatology appt in Jun. The off to the lab for more blood tests. ANA titer positive at 1:2560 and nucleolar stain pattern.

I got a copy of my records and noted my doc had written in suspect systemic Lupus, systemic Scleroderma, CREST, or Mixed connective tissue. Well I'm a quick study and over the next 5 weeks I learned a great deal. I had to stop reading patient stories as they just escalated my already very high anxiety.

Dermatologist said she's got DLE and ordered a biopsy to verify. I got to see my doc last week and she asked what about Rheumatology? I hadn't been seen and had an appt in Oct. When I went into so see her I was clearly sick. Bad nausea for days, tired and just feel sick. She didn't know what to give me. But she did get me an appt with Rheumatology for this week Thursday the 17th.

Little history: I've had Raynaud's since 1994, and these last 3 years I've suffered with digital ulcers, calcinosis, strange rashes, dermatitis, telangiactisia, arthritis, joint pain, photo sensitive skin reactions, hypertension, and depression. Well this is a good start anyway. Well I went through my records and found all these conditions documented. I made a list with the doctors name and date of the entries. I've also noted all my questions. I plan to be ready for the Rheumatologist.

Well it looks to me like I have DLE, SLE?, and or CREST.

To be honest, I'm a bit frightened about my Rheumatology appointment. What will happen? Will I be face to face with diagnosis or will I end up with a zillion tests to take and have to struggle with the anxiety of not knowing. Not knowing is the worst for me. Tell me the truth-all of it is what I want. I really do hope this happens. If it comes down to having a good cry afterwards, that will be OK. Not knowing bothers me most. It's like having my life out of control.

Well that's my story. There is probably some I forgot, but it will come out in time.

Keep Smiling, Love, Marie"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Lee,

I'm honored. I feel that this poem really expresses the anguish that we parents feel and I've been going back and forth on whether or not to use it in my fundraising efforts, since it's so personal. I'd love to see your son's video; you must be more than a little proud of his taking this on.

Joan

Re: Re: introduction

Joan,I just wanted to let you know that my younger son came home from college yesterday and showed us a video of the speech he gave in class on PSC Partners. He started off his speech with your poem!! I didn't know about this. I hope that you don't mind but he did a great job. Thanks.Lee

[Guest guest]

I know it is nice to have a name to what you have..

I just thought I was out of shape ... I got tired so

Easy.. And aches and pains I blamed on my bad back.

Bet

-- Re: Introduction

Welcome! You will certainly find a lot of support and help here! I've only

been here a few days, and it has made a world of difference in my life. Am

even letting go of the guilt for being " lazy " I've had fibro for 20 years,

but it was only diagnosed a few weeks ago. My suggestion is that you get a

referral to a Rheumatologist as soon as possible. I can't start any

treatment until my doc gets his letter of recommendations in about 3 weeks,

but it did me a world of good just to see him and have tthe diagnosis

confirmed and explained!

Introduction

Hi. I'm a single parent of a 13-year-old son who was diagnosed a

couple of years ago with fibro and depression. I'm pretty sure I also

have CFS because I'm always tired no matter what. I was born in New

York and relocated to Richmond, VA in 2001. Here's a little bit about

what's going on with me now.

I lost my job a couple of months ago and am under a lot of stress. I

didn't know as much about fibro other than there is intense pain.

Being as still as I have been, I'm in the middle of a full-blown

attack or whatever it's called. I found out from my friend that the

reason I can't make decisions lately is because of something called a

fibro fog. Makes a lot of sense, but it also makes it very difficult

when I have to go on interviews and getting out of bed.

I'm also a Distance Learning student with Liberty U so that keeps my

mind somewhat occupied but not enough apparently.

I also have lax ligaments which cause them to sublux with overuse. So

my knee and my shoulder hurt and I'm afraid to move or do too much

because of the fear of doing it again. Last night I had to travel a

bit to get home and had an anxiety attack all the way.

I'm here because I'd like to learn more about the disease and what

could help me. I look forward to learning a lot on this board and

perhaps making friends.

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12:19 PM

[Guest guest]

I too, get fibro fog. I have for years but never knew that was what it was. I

remember being in a grocery store and looking at the cans of corn for 10 minutes

because I could not decide what can to get, what brand? Sounds rediculous. I

use to blame all the pain on depression because they say depression is

physically painful sometimes. But then I started thinking, I would get pain

when I had no problem with depression at all. And like you, I am chronically

tired. If I sleep 9 hours, I am good to go for about 4 or 5 hours until I am

exhausted.

Welcome here. write anytime to me personally or the group.

Debra Van Ness

vanmik_flm wrote:

Hi. I'm a single parent of a 13-year-old son who was diagnosed a

couple of years ago with fibro and depression. I'm pretty sure I also

have CFS because I'm always tired no matter what. I was born in New

York and relocated to Richmond, VA in 2001. Here's a little bit about

what's going on with me now.

I lost my job a couple of months ago and am under a lot of stress. I

didn't know as much about fibro other than there is intense pain.

Being as still as I have been, I'm in the middle of a full-blown

attack or whatever it's called. I found out from my friend that the

reason I can't make decisions lately is because of something called a

fibro fog. Makes a lot of sense, but it also makes it very difficult

when I have to go on interviews and getting out of bed.

I'm also a Distance Learning student with Liberty U so that keeps my

mind somewhat occupied but not enough apparently.

I also have lax ligaments which cause them to sublux with overuse. So

my knee and my shoulder hurt and I'm afraid to move or do too much

because of the fear of doing it again. Last night I had to travel a

bit to get home and had an anxiety attack all the way.

I'm here because I'd like to learn more about the disease and what

could help me. I look forward to learning a lot on this board and

perhaps making friends.

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Hi all,

I joined the group a few weeks ago and I have enjoyed your exchanges

about dealing with pain. I think this is a very helpful bunch!

I hope this isn't too long...

When I was 15, I lost my left leg to bone cancer. Did really well,

although I had to give up horseback riding and swimming. Went on to

college and got three degrees, and worked as a writer/editor until 2008

when I started having pain problems that made it impossible to work. I

now freelance from home.

I never did have true phantom limb pain as a result of the operation.

However, I now have pain radiating from my spine down the " missing " leg.

This is a result of 3 or 4 herniated disks, scar tissue from back

surgery in 1981, and a poorly fitting prosthesis, which I hope to

correct soon. This pain was alleviated about 90% until recently by

Lyrica (maximum), Cymbalta (maximum) and Percocet.

Lately it has been hurting occasionally. Sometimes I have what I call

" electrical storms, " where the nerve pain shoots down so fast it makes me jump

off the bed. These last 5 to 10 minutes. Fortunately, they are not real common.

It is usually steady pain as if being shocked or stabbed. I also have crushing

pain down both legs -- exactly the same pain in both -- as if concrete is

pressing on my legs.

My right leg was pretty strong until May 15 when I fell and really hurt my knee

and possibly my spine -- who knows? Anyway, my right leg is weak now. I have

been going to physical therapy and my right leg is getting stronger every day.

I used to use a cane and went wherever I wanted to go, no problem. Now I have to

use a crutch and I am so dependent on it, I actually got a rotator cuff tear. My

wonderful PT helped me get through that, and now we are working on getting back

to the pain.

I also have a weird pain near the site where I had breast cancer 3 years

ago. It is like a knife stab. I have had a CT scan, MRI, and bone scan

and nothing shows up. It is probably a myofascial problem.

Here are some of my diagnoses... Femoral Flexion Contracture, left side

(makes my walking painful); Post Laminectomy Syndrome; Lumbar

Radiculopathy, left L5-S1; Sacroiliac Joint Syndrome, bilateral;

Idiopathic neuropathy, legs bilateral; Lumbar Facet Syndrome; Chronic

Myofascial Pain; Osteoarthtritis, left hip; Probable Fibromalgia.

I enjoyed your discussion on what you do to help ease your pain. Does

anyone else have a dog? We used to show dogs, so we have 10 right now.

Actually, 5 are rescue dogs. I love lying on the bed with some of them

around me, reading or watching TV. , a Maltese, likes to lie on

my hip as my heating pad, just as his ancestors did for thousands of

years. Pepper, a larger mixed breed, likes to put her chin on my thigh,

which feels good. The rest just keep me company. It is nice. Most have

long hair so it is nice to pet them. When I feel better we hope to take

some of them to the park. I have a scooter now so I can ride that while

my husband walks the larger dogs or pushes the 5 Maltese in the stroller.

Someone mentioned running the warm water, then the cold. I heard that

from an acupuncturist, so I saved that e-mail and I plan to try it. I

also like isometric exercises -- just tensing muscles in my legs, then

releasing them. I also have to do my tortuous PT exercises every day too.

Anyway, that is my story. Thanks for reading!

[Guest guest]

> Hi all,

>

> I joined the group a few weeks ago and I have enjoyed your exchanges

> about dealing with pain. I think this is a very helpful bunch!

> I also have a weird pain near the site where I had breast cancer 3 years

> ago. It is like a knife stab. I have had a CT scan, MRI, and bone scan

and nothing shows up. It is probably a myofascial problem.

,

Welcome and I am so sorry you have the pain problems you do and I can relate.

The Sacral Iliac Syndrome and fibromylagia along with back problems that I have

three BAK cages, two rods, and six screws and scar tissue L 4 thru S1 and

arachoidnitis from extensive injections I did not need to do but Doctors insist

it is part of my pain management.

I finally said I am just doing medication management, physical therapy, and my

home stretch program and exercises my Myofascial Release Physical Therapist

developed. Heat helps my cramping and I get the stabbing pain you described and

I said it is like sitting on my butt with a knife stuck in there stabbing me.

The members here are very compassionate and caring and I hope you find something

that will help you and it is always a place of encouragement.

I used to be a cancer therapist and I bet the pain I your breast is from scar

tissue. I have had repeated breast surgery that left me with scarring and the

type of pain you describe. I had exercises given to me by the Physical Therapist

and my surgeries were over twenty years ago, I still feel scar tissue break up

if I stretch my arm really high.

We used to give our patients an exercise that you stand sideways against the

wall and crawl up the wall with your arm and hands as

far as you can stretch up the wall. It really works even if you

think it is easy.

I got bit on my right beat by a brown recluse spider reaching behind some bushes

to turn on our water. The bite area rotted the skin out and I had to go for

debridement for a month and that produced more scarring and a thin skin

covering. So I do arm and breast stretches. I found a lot of stretch and self

myofascial exercises on You Tube.

You just type in arm myofascial exercise in the search box and it will prompt

the videos showing how to do the exercises. I hope you find something that helps

you in your pain journey and this is

a good group and our moderators work hard and support the group. Welcome again.

Bennie

[Guest guest]

Hi ,

Glad to meet some who also rescues Animals. I've been in Rescue 40+ yrs, I

'KNOW' I've been doing it ALL MY LIFE, of all my 'Baby pictures'. I can only

find one taken by an Uncle at their house, that I don't have, or am holding a

cat. Or some other Animal. We were the first ones on our 'Court' to have our dog

spayed, in the '50's. Other neighbors followed, but manly we had cats.

My Parents divorced when I was 9-10, so we rented, a cat was easier to hide. Mom

liked to move, I mean up the st. down the st., around the block, even across the

st. Then there was the 5 moves back & forth from Chicago to Ca. we took our cat

'Beezie' with us...ALWAYS. He knew the words Mom would say...'Get in the

Corvair'. Her moves would take us 3 days, with a few hrs. of sleep, we had a box

for him in the car, but if we stopped even in the Dessert, for a 'Potty Break',

he would get out & take one too. We would drive straight threw, with me driving

at night, cause I wasn't old enough to drive, but Mom needed some sleep. I hurt

my Back at 8yrs. old. & know all her moves made it worse.

In the late '60's, after coming back to Ca. & only staying a few mons, Mom was

ready to go back to Chicago. I had moved out & had my own apt. my Sister was

going to stay in Ca. with me, 'Beezie' even hid. Mom had lost all her travling

'Friends', my Sister & I even sold the 'Corvair' on her. We did buy her another

car...BUT WE WERN'T GOING! She stayed in Ca., tryed 'Vegas' for awile, still she

had her 3 days of moving around Ca. I finally found her a 'Senion'(?) apt. in a

new building in my town, she payed a small amount of her S.S. for, she HAD to

stay there, we were done moving her. As we were moving her in we joked 'I

remember moving this box, when I was 25yrs. old, or I remember moving this box

when I was 35' & on & on. People in the building started helping us & joined in

on when they moved remembered moving a box at such & such of age. She never cut

me any 'Slaack' with my back pain, even when I had to crawl around, pushing a

step ladder, to do my chores & my Sisters. If hers wern't done I got yelled at,

not her, the BRAT. Mom would never admit I had back problems, even after she was

hit by a car of 'Illegals' & had 3-4 Surgeries on her back.

I never wanted to 'Blame' her for making my back worse, just wanted to

say...'Maybe all the moves didn't help your back pain'. She never would & as she

got older expected more & more from me & my family, even when my husbands Cancer

came back & he was going in & out of the Hosp., she was 'Sicker' then all of us.

She died in 12/09, my Sister took on being 'The sickestist person in the world'.

When she got out of helping with all the moves, she is 7yrs. younger then me. I

have to read all the posts about everyone taking 'Pain Meds', my Sister tells

everyone I take them by the handful all day & night. Yes to her I'm a 'DRUG

ADDICT'.

She doesn't say anything about the 2 boxes of wine she drinks & going in & out

of the Hosp. with what she calls 'Her Jaunice'. She's claiming she was born with

it, now it's showing up. Who does she think she's kidding? Only herself & her

Family, who do all the work, as she talks on the phone & drinks all day & night.

I'm so sick of it!

I'm NOT a 'Drug Addict'! I have disc's that are gone, causing my Vertebrates to

grow together, also 'Kypoisis' that surprised my G.P. he asked 'What are you

going to do'? He's the Dr., I don't know what to do. My med's take the edge off,

still I do it all. I fix the car, plumbing, have to cover where the roof is

leaking, until I have the time to fix it. I can't go into how I shattered my

knee, that goes out on me, causing me to fall & break bones.

Excuse all my mistakes, I have to get off. Besides I have 4-5 cats waiting for

me, one who was a 'Feral' bites me, when he wants me in bed with him. The big

lug, I think he 'thinks' he's kissing me. He knows I'm the one who cut his ear,

marking him as a neutered Feral.

Nice to meet you. kiss all your 'Babies' for me. Sorry for the book. I'll say

Goodnight for now, I'm in screaming Pain. I won't sleep tonight.

Hugs, Pegi. XXXOO