Re: Hello I'm New To This List

April 20, 2002

Hello Alice! Sorry you had to find this group but I have found it very

helpful and informative for the short time I have been on it. I was

diagnosed with RA in 1995 and started receiving disability in 1999. Luckily

I received my benefits upon first request.

How did your doctors determine if you had RA, Lupus or whatever your protocal

was? I am on rheumie #5 (2 retired, one died and one I just plain disliked)

just this week and SHE thinks I may infact have Lupus rather than RA. Given

my joint pain is mainly feet, knees, hands/wrists and it is slowing down she

feels that the joint pain/swelling could have been the beginning of lupus.

Lots of things sounds like Lupus, some don't add up. She did the whole CBC,

RF, ANA, DsDNA, RFN? and some other Lupus related tests so hopefully I will

know what her impression is this week. I read one article on Lupus and that

was enough to make me stop reading anything further until I know for sure!

My aunt has Lupus but it seems very much under control.

Have a WONDERFUL day!

Shandi

In a message dated 4/20/2002 12:32:08 PM Eastern Daylight Time,

carol@... writes:

> Hello, My name is Alice Braddy . I live near San , Texas (for

> about years). I was diagnosed with Rheumatoid Arthritis in 1997,

> undiagnosed

> with RA in 1999, diagnosed with Systemic Lupus in 1999, and then

> rediagnosed

> with RA right after that. I quit working in Oct of 1999 (as a mental

> health

> caseworker - couldn't risk the injuries or being exposed to illnesses

> anymore). <SNIP>

April 20, 2002

Hi Alice and welcome! Thanks for sharing about your disability experience,

as there are many of us applying or considering it. I'm sorry to hear about

your fall rescuing the kittens, and the ensuing flare. Hopefully the meds

will get it under control promptly.

I think you'll find this group to have a lot of helpful and caring people.

I've been here a couple of months and have learned so much!

Have a good weekend!

Carol in FL

[ ] Hello I'm New To This List

Hello, My name is Alice Braddy . I live near San , Texas (for

about years). I was diagnosed with Rheumatoid Arthritis in 1997,

undiagnosed

with RA in 1999, diagnosed with Systemic Lupus in 1999, and then rediagnosed

with RA right after that. I quit working in Oct of 1999 (as a mental health

caseworker - couldn't risk the injuries or being exposed to illnesses

anymore). I had (thank God) long term disability insurance and filed for

SSDI in Jan. of 2000. I lost on the first try for SSDI and decided to find

a

lawyer to handle the appeal. I received my first social security check in

Dec. of 2000. I'm not sure what my lawyer did to get it to go, but whatever

it was, it worked! I have just started receiving my medicare benefits on

April 1st of this year. By the way, I am 42 years old and am almost

housebound for the most part, but do try to get out with my husband and

youngest daughter fairly frequently. I guess the point of this is to tell

y'all to hang in there. My doctor wrote my disability papers up for both my

long term and my social security as a worst case scenario, that may be why

it

went through so quick. Also, more damage from taking Propulsid for about

eight months. Until about three weeks ago, I had managed to get by with

only

Trazadone for sleep and no pain meds. I fell rescueing three newborn

kittens

(only about a six inch fall forward onto my hands and knees) and apparently

threw the RA out of remission (?) and haven't been able to walk without a

cane or assistance for the last couple of weeks. Doc says it's the RA,

nothing broken, no pinched nerves. Sorry this is so long - I guess from the

emails I've been reading today, we're all putting up with a lot! See you

later - Alice

April 20, 2002

Hi Alice

Welcome to the group. I'm sorry to hear that you are having a hard time, but

you have found the right place. The people in this group are considered my

RA family. They are wonderful and no matter what the problem, someone has

experience or knowledge to help.

Stacey in PA

April 21, 2002

In a message dated 4/21/02 8:24:54 AM Central Daylight Time,

Matsumura_Clan@... writes:

> Welcome to the group, Alice! You've been through the ringer, but I'm

> happy you found us.

>

> Thanks for reporting that you got SSDI fairly quickly. We need to hear

> those success stories.

>

> How, may I ask, did Propulsid affect you?

>

> Sorry to hear that you've been largely housebound lately. I hope your

> health improves soon so you can get out more.

>

, Thanks for writing. I guess the housebound thing is kind of a

combination of different things. The biggest problem is fatigue from the

Lupus. I've added to the mess by the fall that caused the RA to flare up.

My husband " makes " me get out, so that I won't just sit here and turn into a

vegetable!

The Propulsid caused a number of problems - some short term and some ongoing.

I have had problems with severe heartburn for about 20 years (starting with

my first pregnancy). When I moved to San , I finally found a doctor

that didn't tell me to go home and forget about it. He prescribed Propulsid

before the dangers of it were known. I started taking it in about July of 99

and within a month or so was really messed up - problem was we thought the

Lupus symptoms were getting worse. I was more fatigued than usual, starting

losing my balance easily, slept really hard (my husband and daughter said

they couldn't wake me up and that I snored like crazy), couldn't remember

anything, and worst but not last problem was I started having heart problems

(racing heart, irregular beat etc...). I quit working in Oct.99 because I

couldn't handle it anymore. In March of 2000, I fell down a neighbors mobile

home steps (not dizzy, my legs just gave out) and broke my left foot and

ankle into a kazillion peices. I saw my doctor the next day as a follow up

from the emergency room trip. He asked if I was still taking the Propulsid.

When I told him yes, he said not to ever take it again and put me on Atenolol

that day. As soon as I quit taking it, all of the symptoms quit that were

due to the Propulsid except the heart. I filed a lawsuit (class action) and

that should be through the courts by summer. Sorry about the length of this!

I am a rambler when I start writing! After I fell a couple of weeks ago

(that fall was my own clumsiness, no other reason!) and threw my back out, my

husband and daughter moved the computer into the bedroom so I wouldn't be

" lonely " ! Anyway, I wish that everyone out there could get their benefits as

easily as I did mine. Hope y'all all have a great day! Alice in Texas

April 21, 2002

Welcome to the group, Alice! You've been through the ringer, but I'm

happy you found us.

Thanks for reporting that you got SSDI fairly quickly. We need to hear

those success stories.

How, may I ask, did Propulsid affect you?

Sorry to hear that you've been largely housebound lately. I hope your

health improves soon so you can get out more.

[ ] Hello I'm New To This List

> Hello, My name is Alice Braddy . I live near San , Texas

(for

> about years). I was diagnosed with Rheumatoid Arthritis in 1997,

undiagnosed

> with RA in 1999, diagnosed with Systemic Lupus in 1999, and then

rediagnosed

> with RA right after that. I quit working in Oct of 1999 (as a mental

health

> caseworker - couldn't risk the injuries or being exposed to illnesses

> anymore). I had (thank God) long term disability insurance and filed

for

> SSDI in Jan. of 2000. I lost on the first try for SSDI and decided to

find a

> lawyer to handle the appeal. I received my first social security

check in

> Dec. of 2000. I'm not sure what my lawyer did to get it to go, but

whatever

> it was, it worked! I have just started receiving my medicare benefits

on

> April 1st of this year. By the way, I am 42 years old and am almost

> housebound for the most part, but do try to get out with my husband

and

> youngest daughter fairly frequently. I guess the point of this is to

tell

> y'all to hang in there. My doctor wrote my disability papers up for

both my

> long term and my social security as a worst case scenario, that may be

why it

> went through so quick. Also, more damage from taking Propulsid for

about

> eight months. Until about three weeks ago, I had managed to get by

with only

> Trazadone for sleep and no pain meds. I fell rescueing three newborn

kittens

> (only about a six inch fall forward onto my hands and knees) and

apparently

> threw the RA out of remission (?) and haven't been able to walk

without a

> cane or assistance for the last couple of weeks. Doc says it's the

RA,

> nothing broken, no pinched nerves. Sorry this is so long - I guess

from the

> emails I've been reading today, we're all putting up with a lot! See

you

> later - Alice

April 21, 2002

In a message dated 4/20/02 1:26:47 PM Central Daylight Time,

shandster@... writes:

> Hello Alice! Sorry you had to find this group but I have found it very

> helpful and informative for the short time I have been on it. I was

> diagnosed with RA in 1995 and started receiving disability in 1999.

> Luckily

> I received my benefits upon first request.

>

> How did your doctors determine if you had RA, Lupus or whatever your

> protocal

> was? I am on rheumie #5 (2 retired, one died and one I just plain

> disliked)

> just this week and SHE thinks I may infact have Lupus rather than RA.

> Given

> my joint pain is mainly feet, knees, hands/wrists and it is slowing down

> she

> feels that the joint pain/swelling could have been the beginning of lupus.

>

> Lots of things sounds like Lupus, some don't add up. She did the whole

> CBC,

> RF, ANA, DsDNA, RFN? and some other Lupus related tests so hopefully I will

>

> know what her impression is this week. I read one article on Lupus and

> that

> was enough to make me stop reading anything further until I know for sure!

>

> My aunt has Lupus but it seems very much under control.

>

> Have a WONDERFUL day!

> Shandi

>

Hello Shandi, I'm glad I finally decided to join a list. This way maybe I

won't whine quite so much about my own problems to my family! I'll just

whine at y'all instead! :>)

A doctor in the public health department in San Angelo Texas did the lab work

in 1997 and said it was Rheumatoid. I was in a lot of pain (now I know it

was only a little bit, I just thought it was a lot at the time) but that doc

didn't do anything at all. I had been sick off and on for several years,

nausea (that finally turned into full scale vomiting almost everytime I ate),

muscle and joint pain, fatigue, etc.... The emergency room doctors were

telling me that 1) it was the " flu " (over and over and over) or 2) I needed

mental health help because it was all in my head. I finally did go to the

mental health clinic and was put on Paxil (yuck) and succeeded in being more

fatigued and sick than ever. We moved to San in 1998 (I was in a

semi-remission at the time and didn't know that's what it was). I got a job

in a mental health facility as a caseworker and was cruising along until

around Feb. of 1999 when I started crashing, couldn't walk well, very, very

sick. The doctor I had was a miracle. He listened to what I was telling him

and started to run all the labwork. He said that my ANA came back at about

385 and it should have been less than 100 (if I'm remembering the numbers

correctly). That's when he said he thought this was Lupus. When he did the

titer for rheumatoid the first time it came back negative. He re ran the

test several months later and said it was definitely RA and tied up with the

Lupus. I don't know why it showed up negative and then turned around. He

ran a lot of tests, so I don't know what the rest of them were. I have all

the copies of my lab work around here somewhere, but don't have a clue where!

Anyway, let me know what your doc says about Lupus. I hope you don't have

it, but at least when they finish the tests, you'll know one way or another.

I was actually relieved when I found out, because it showed that I wasn't

crazy or lazy!

Alice

April 21, 2002

In a message dated 4/20/02 7:16:40 PM Central Daylight Time,

staceycrwfrd@... writes:

> Hi Alice

> Welcome to the group. I'm sorry to hear that you are having a hard time,

> but

> you have found the right place. The people in this group are considered my

>

> RA family. They are wonderful and no matter what the problem, someone has

> experience or knowledge to help.

> Stacey in PA

>

Stacey, Thanks for writing. I see that y'all are really good support for

each other on the list. It may take a load off of my husband and youngest

daughter that I have other people to talk to about this. My husband was in

denial for a few years and kept saying that he was going to find a doctor

that would make me well. Now, he knows well isn't what's going to happen.

He tries very hard to be supportive and only gets impatient every great once

in a while. Anyway, I'm glad to know all of you are out there.

Alice

April 27, 2002

In a message dated 4/27/02 5:10:45 PM Central Daylight Time,

paula54@... writes:

> Alice,

> I'm sorry you went through so much before getting a diagnosis.

> Unfortunately stories like

> yours are common since these rheumatic diseases don't have a specific test

> to confirm.

> I'm glad you found a good doctor that looked for answers and hopefully

> you'll get treatment

> that will help.

> Whining to each other here is a big help. You have lots of understanding

> people that

> know what you're going through.

> I've experienced photosensitivity when on different RA meds, but when I'm

> not taking

> the ones that are known to cause photosensitivity, I don't have a problem.

> I am fair

> skinned and burn easily anyway so I avoid the sun when it's the hottest. I

> like going out

> in the morning and late afternoon but if I'm outside during midday, I cover

> up. sent

> some great links that tell you which meds cause photosensitivity.

> Hope you're having a painfree weekend.

> a

> a, After hearing some of the horror stories about problems with SSDI,

> Insurance and related problems, I guess I've been fairly lucky since I got

> too sick to work. I highly appreciate that all of us on this list have a

> place to go for help and sympathy when it gets too difficult to handle. My

> husband is more supportive now than he was to start with. The biggest

> problem, I think, has been with the other members of my family. My

> parents, stepparents, siblings, etc... have a very strong work ethic. They

> assume if someone is sitting at home, not working, then they are

> malingering. I think though that as far as my mother is concerned, she's

> finally beginning to understand that this is not some plot to get out of

> working. I guess this is one of my " pet peeves " - just because someone

> " looks " reasonably well, doesn't mean that they are. My husband is now

> very supportive and tries very hard to be patient. He is a very active

> (and healthy) forty year old man, so he has had to learn that I can't keep

> up with him or our twelve year old daughter. He actually has built a

> screened in front porch on our mobile home so that I can sit outside

> without making myself sick. OK, I've said enough for now, Thank y'all for

> listening!

>

> Alice Elmendorf, Texas

>

April 28, 2002

Alice,

I'm sorry you went through so much before getting a diagnosis. Unfortunately

stories like

yours are common since these rheumatic diseases don't have a specific test to

confirm.

I'm glad you found a good doctor that looked for answers and hopefully you'll

get treatment

that will help.

Whining to each other here is a big help. You have lots of understanding people

that

know what you're going through.

I've experienced photosensitivity when on different RA meds, but when I'm not

taking

the ones that are known to cause photosensitivity, I don't have a problem. I am

fair

skinned and burn easily anyway so I avoid the sun when it's the hottest. I like

going out

in the morning and late afternoon but if I'm outside during midday, I cover up.

sent

some great links that tell you which meds cause photosensitivity.

Hope you're having a painfree weekend.

a

I'm glad I finally decided to join a list. This way maybe I