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Re: Digest Number 1901

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Cristine,

I feel exactly as you do. I don't know what the

future holds. My faith and hope is challenged.

I've been active all my life and am afraid of a

life in wheelchair, crutches, etc. As I said in

an earlier msg, the thought of getting a

handicapped placard was a big step for me, but

now I welcome it (can't wait to get it) because

of the problem I'm having with breathing.

Do you guys ever find yourselves sort of

" bargaining " (for lack of a better word) for one

part of RP and not another? I remember saying to

myself I would settle with tracheal involvement

if I didn't have a saddle nose. But now that I

have both, the saddle nose isn't that obvious

(I'm hoping that plastic surgery can fix. Yes or

no????) and you don't want tracheal

involvement...not that you can make a choice.

And I also find myself comparing my disease with

other kinds and saying, " well if only I had that

I could do ok " , or " thank God I don't have

that, " ....

Maybe this is a stage in which everyone goes

through? It's been suggested that I see a

therapist who specializes in chronic illnesses

and/or stress management (since the breathing

problems can come via stressful situations).

Besides this group, a therapist can help you deal

with your illness.

Cristine, what do you mean when you say you blow

up during flights? I flew out to Europe last

october and felt ok, though I was on 30mgs of

Pred. My feet were swollen during the vacation

because we walked alot. I also continued with my

exercise regimen. I jump-roped in the hotel room

and did abs every night because i insisted that I

wasn't going to get fat on Prednisone. I had

known about my disease for only 3 mos. I now know

that I did too much, but who knew?

So what do you do to take care not to " blow up "

the next time you go on a trip? Just curious.

________________________________________________________________________

Message: 1

Date: Wed, 8 Aug 2001 21:45:06 EDT

From: cmz212@...

Subject: Re: Digest Number 1896

I work from home. I'm an arts critic for English

publications. I just found

out about this disease--I don't know what the

future holds--I worry about my

mother's capacity to cope with the truth as well,

and wonder why my dead

father didn't protect me, and dread getting fat

frm. steroids, wonder how to

keep my dignity if I wind up looking like

Quasimodo (floppy ear, saddle

nose), am losing my Catholic certitudes (what

little I had of them)--and my

heart goes out to you, 1896.

=====

When choosing the lesser of two evils,

I always like the one I haven't tried.

-- Mae West

__________________________________________________

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  • 1 year later...

Dear , please let us know what your doc wants you to do. I am sorry that

none of us in this group can say what *you* might need regarding these highly

potent drugs. Even if we had an MD on staff, they would need to see your

entire health history. I know that docs often ask several changes on meds

before surgery for some. Your doc will help you I am sure. Friday will come

soon.

hang in there

love,

ceep

In a message dated 1/7/03 1:45:19 PM, Graduate-OSSG writes:

<< Today, I found out that I can have my TT on January 17--with the surgeon

that did my open RNY --his patients rave that his TT's are really great -so

quick because I'm, as usual, a self-pay.

Anyway I had a question that I don't think has been covered recently--Here

goes:

I am currently on three meds for my heart (two leaking valves probably

phen-phen created)--Anyway, I take:

Digoxin--0.25mg

Coumadin (Warfarin Sodium)--5mg

Coreg--6.25mg

Is there a period of time you should stop the drugs--especially the

coumadin? I have an appt. with my cardiologist on Friday, but was

curious--- Thanks in advance for the help.

>>

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  • 1 year later...
Guest guest

Tracee---yes, I too was on my period---it is not really a big deal. I am

also a nurse who works in surgery so trust me when i say that happens all of the

time. No one can wear a tampon in surgery anyway---so all i did and what we

do for all women that this happens to is wear a pad---no underwear is allowed

either--but they stay in place okay---dont worry about it---just be sure to

tell the nurse going into surgery so they will know and can help---CIndy

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Guest guest

Tracee---yes, I too was on my period---it is not really a big deal. I am

also a nurse who works in surgery so trust me when i say that happens all of the

time. No one can wear a tampon in surgery anyway---so all i did and what we

do for all women that this happens to is wear a pad---no underwear is allowed

either--but they stay in place okay---dont worry about it---just be sure to

tell the nurse going into surgery so they will know and can help---CIndy

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