Folic acid, stents and other commentary

[Guest guest]

About the folic acid: I take prenatal vitamins (I

have been trying to get pregnant--more off than

on because of RP--for the past 2 yrs and stopped

trying 2-3 months ago around the time I started

taking meth and vioxx. I continue taking the

vitamins, however). I don't know the amt of folic

acid but I haven't had any trouble with mouth

ulcers or nausea on meth and I'm at 10mg/wk. My

rheum told me that folic acid was essential to

take with meth because there were studies that

meth alone would cause liver probs. (People in

England were taking meth w/o folic acid and

having liver probs).

Oh, yesterday I had my breathing test done (it

was a loooong appt, blowing into tubes many many

times). It showed that I definitely had decreased

air flow at inspiration and I am a candidate for

a stent. I later met with a pulminologist who

told me that the location of the tracheal

collapse and other factors would also have to be

considered, so I'll know better once he talks

with my ENT and Rheum. I don't know how soon this

will happen, but I'm thinking of piggybacking a

trip right before surgery so that I'll at least

have a good time before I have a terrible time.

I'm still sore for having cancelled my Ireland

trip so I'm thinking of traveling up to POrtland

or driving down the coast to visit friends in

Santa Barbara/LA/San Diego, but I digress...

Part of the reason why I'm thinking of

piggybacking my trip is to take a lump sum of

time off from work without them ever knowing I

was in the hospital. I'm a consultant workign

part-time and my client is preparing the

paperwork (at a snail's pace) to hire me as a

permanent full time employee and I don't want

them to know I have a chronic disease for fear

they won't hire me. I've been able to explain

away my hoarse voice and breathing problems by

honestly saying it's an inflammation problem and

I'm taking steroids (to explain the beautiful

puffy face!). I've been told that I'll need an

overnight stay at the hospital and recuperation

will be short. So I'm figuring that if surgery is

on a Thursday, for example, I could possibly go

back to work on Monday?

I keep bugging you all about stents, because I

don't know what to expect and drs are notorious

for not telling you everything you really need to

know. (I once had surgery on my pinky finger and

was never told that I would be in a cast for a

week. I thought I would be able to go back to

work the next day!). So if you know about stents

or know someone who's had it, please pleas please

let me know. I need practical information. The

doctor who would be performing this surgery has

already done it for several RP patients (I should

ask him for a list of the patients and start my

own support group!).

Sometime back, someone made a comment about

keeping RP a secret and not telling friends or

family about their disease. I'm the total

opposite. I want people to know what I have

because it explains right away the weight that

I've gained ( " Well at least I can blame it on

medications. What's your excuse??? " it's my pat

and planned comeback line to rude relatives who

have the gall to comment about my weight gain.

Haven't had to use it yet) and the limits to my

activities and even my emotional state. (Although

I HATE it when my husband blames my blow ups on

the prednisone and not because he'd done

something wrong...). I don't go on talking about

the disease, but I will bring it up to show that

it doesn't bother me to keep it out in the open.

Also, I think it's a good idea to talk about

autoimmune diseases with anyone willing to

listen. It's a growing problem and even the media

is picking up on it.

Sorry for the long msg.

" can't shut her up " B.

=====

When choosing the lesser of two evils,

I always like the one I haven't tried.

-- Mae West

__________________________________________________

[Guest guest]

In a message dated 8/11/01 12:22:36 AM Pacific Daylight Time,

hiacynth1@... writes:

<<

Sometime back, someone made a comment about

keeping RP a secret and not telling friends or

family about their disease. I'm the total

opposite. I want people to know what I have

bec >>

Dear (can't shut her up) B....LOL Well you've found the right group..

None of us you can shut up. LOL

I agree with you...I think the RP should be out in the open... This is what

the foundation is hoping to achieve. Make EVERYONE Aware !!! It is

important for family and friends to know.... It is just as hard or even

harder on them, but I think in the long run it is a relief to know exactly

what is happening and not always fear the worse.

We can all make a difference and I hope once we get the brochures and

fundraising started for the foundation we will all take an active part in

letting the public and drs become more aware.

I also think that Glenda's idea of having our local newspapers tell our story

is a great one... If we all did a little article for the news we could

spread the word...

I'm so sorry to hear that you might nee a stent... I'm not sure of the

members who have one.. I think Rene does and I hope she reads your post and

responds to you. I don't know anything about stents....

I will keep you in my thoughts and hopefully someone will be able to answer

your questions.

Have a great weekend...

hugs