Fw: [rpolychondritis] Re: Blisters

[Guest guest]

sorry just hitting that reply button again

Angie

[Guest guest]

I'm forwarding this message from egroups to onelist, please everyone

remember to use Onelist from now on.

Thank you,

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>.

[rpolychondritis] Re: Blisters

> Eunice

>

> I got up this morning and on my arm it appears to be bloches of blood

under

> the skin.

> Did you every have this before? It seems as if I would scratch the skin

off

> the blood would come out.

>

> Rene'

>

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[Guest guest]

Forwarding this message from egroups to Onelist. Please everyone remember to

use Onelist from now on.

(This is a recording. LOL)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

[rpolychondritis] Re: Blisters

> In a message dated 8/10/99 12:54:04 PM Central Daylight Time,

WCTET42@...

> writes:

>

> << Not true!!!!! Your sternum and ribs can take the abuse alone sometimes.

> Maybe even have a hoarse throat without the ears hurting or red. I think

it

> depends on what area it 's attacking at the time it goes on a rampage.

> Eunice >>

> Eunice,

> Thanks for the info. I'm down to 1 mg. of Pred and feel as if I'm having

a

> little bit of a flare, chest hurts, nose hurts, tailbone hurts. But, SHE

> says if the ears aren't involved, it isn't an RP flare. REALLY wish I

could

> consult with another dr., but none around here seem to know much about RP.

> T.

>

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[Guest guest]

Forwarding from egroups to onelist. Please use Onelist everyone from now on.

(This recording is getting tired.)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

[rpolychondritis] Re: Blisters

> In a message dated 8/11/99 7:12:55 PM Central Daylight Time,

> AngieCATW1@... writes:

>

> << low dose of pred or no pred at all, what is the point? >>

> Angie,

> You are SOOOO right. I took 32 mg. of Pred today and felt like a new

person.

> It infuriates my Rheumy when I do this, but , then, she's not living with

> this disease.

> T.

>

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[Guest guest]

Forwarding from egroups to onelist. Please, please, please everyone use

Onelist now only. I'm begging now. On my hands and knees. Ouch. Now I can't

get up!!! OK you guys, this is all your fault!!! Stop replying to egroup

messages. Someone call in a crane I can't get up.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

[rpolychondritis] Re: Blisters

>

>

> Okiebabes@... wrote:

>

> > In a message dated 8/10/99 12:54:04 PM Central Daylight Time,

WCTET42@...

> > writes:

> >

> > << Not true!!!!! Your sternum and ribs can take the abuse alone

sometimes.

> > Maybe even have a hoarse throat without the ears hurting or red. I

think it

> > depends on what area it 's attacking at the time it goes on a rampage.

> > Eunice >>

> > Eunice,

> > Thanks for the info. I'm down to 1 mg. of Pred and feel as if I'm

having a

> > little bit of a flare, chest hurts, nose hurts, tailbone hurts. But,

SHE

> > says if the ears aren't involved, it isn't an RP flare. REALLY wish I

could

> > consult with another dr., but none around here seem to know much about

RP.

> > T.

> >

>

> This stuff makes me so mad - my dad died in April of RP, and never, ever,

ever

> had one single problem with his ears - it went right for his trachea. Ask

her if

> she is familiar with malpractice - THAT'S something she had bettter know

> something about.

>

> Eileen Linde

>

>

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[Guest guest]

Angie/owner of group, please reply to Onelist only from now on. LOL

Eileen, sorry I've been so busy forwarding mail that I haven't read it.

Please answer Angie's question as soon as you can, we'd all like to know the

answer and if you're ready, tell us about your dad and his experience with

RP. It would really help us to learn from this. If you're not ready, that's

quite OK too. It's up to you. We will all understand if you don't want to

talk about it yet.

Thank you,

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

[rpolychondritis] Re: Blisters

> In a message dated 08/13/1999 9:57:54 AM Eastern Daylight Time,

> mjlinde@... writes:

>

> << This stuff makes me so mad - my dad died in April of RP, and never,

ever,

> ever

> had one single problem with his ears - it went right for his trachea. Ask

> her if

> she is familiar with malpractice - THAT'S something she had bettter know

> something about.

>

> Eileen Linde

> >>

> Eileen

> how long was your father ill with the RP before his passing? If I remember

> right he wasn't treated correctlyt at first either I may be wrong

> Angie

>

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[Guest guest]

Forwarding from egroups to Onelist.

[rpolychondritis] Re: Blisters

> so far no more ear flares but i don't know why. sorry.

> i have a question - i seem to get an amazing amount of mail from this

group,

> some of them look like duplicates, do you know why? i'm new and not sure

how

> this works.

>

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[Guest guest]

Hi cLund here. My blood count is probably higher then has ever been in

my life. I think its the meth . Was a little disturbed to see someone say

there are no side affects with meth. I get sores in my mouth I sleep for 24

hours after I take the pills. noot every time but most of the time Then

there is the nausea. Each person is different and it also depends on the

dose. I have yet to be pain free while takinf the meth but it has improved

the quility of life somewhat I took immuran for about 8 months and it did

absolutely nothing. so there has been some improvement . I guess I want my

life back the way it was before RP FAT CHANCE So we try to get though the

day without being too much of a witch .The only thing certain about this

damn disease is its uncertainty. So Rene we will all try to help you in any

way we can because we probabvly have more info then the better share of the

doctors. Sometimes I.d like to have all the answers but then again this

stuff has its share of surp[rises around every corner and most of them we

could all do without. When I see my little granddaughters eyes light up

cause they me GRANDMA it makes this war of ours less of a battle There are

times ' many times Id like nothing better then to throw in the towel. but I

never was a quitter and what would that teach my children and grandchildren

And yes I have shared a few things with my husband about my death Really

thats not his responsibity . I will take care of those things and spare him

what I can. Dying is the last thing each of us is going to do and by God I'm

going to do it my way

[Guest guest]

In a message dated 8/18/99 8:49:55 PM Central Daylight Time,

kllund@... writes:

<< Dying is the last thing each of us is going to do and by God I'm

going to do it my way

>>

Well ,

I absolutely agree with you. : ) I am sorry to hear you have had problems

lately, this silly darn old disease ! you have a good outlook....

Lu

[Guest guest]

Forwarding from egroups.

[rpolychondritis] Re: Blisters

> In a message dated 08/17/1999 6:39:39 PM Eastern Daylight Time,

> DRobi10137@... writes:

>

> << : DRobi10137@... >>

> it seems you are still receiving posts and submitting posts through

egroup.

> Please disregard any from egroup and use only onelist. It may take a few

days

> but the egroup mix up will be fixed

> thanks

> Angie

>

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