Re: Carolyn & Painless valves

[Guest guest]

Hi Connie :-)

.....I think that she is gently urging to think about upping

the pred because maybe it's possible that as one " thing " like ears,

or nose are flaring.....maybe so are other " things " like heart valves.

Just a guess.

Right, Carolyn?

take care and hugs to all,

Connie H.

> Hi Carolyn,

> I know I don't have mushy ears, but I might have a mushy brain.

LOL

> I didn't follow your train of thought when you were saying to

> that 'heart valves are pretty painless.' Where were you going with

> this?

>

> Please help me out here! Thanks,

> Connie

>

>

[Guest guest]

Thanks Connie H.

That was my hunch, but I wasn't sure.

If so, it sounds like the advice I keep getting from my docs when

they want to treat me aggressively and I resist. In my case, they

say they have to treat my whole body aggressively, even if only my

eyes or ears, etc. are flaring because there could be other silent

inflammation elsewhere doing mischief. It's sort of scary. So I try

to be a very compliant patient, but it sure is hard at times. As we

all know, these meds can be really rough. Oh well, enough

complaining for now!!

Sorry I went on like that.

Sending warm wishes and gentle hugs to everyone.

Love,

Connie R

> Hi Connie :-)

>

> ....I think that she is gently urging to think about upping

> the pred because maybe it's possible that as one " thing " like ears,

> or nose are flaring.....maybe so are other " things " like heart

valves.

>

> Just a guess.

>

> Right, Carolyn?

>

> take care and hugs to all,

>

> Connie H.

> >

[Guest guest]

It is hard, Connie. There is so much that is unknown about this darn

disease. Our doctors can't know everything, even though we wish that

they did. I wonder if Drs. Trentham, Buckner, Herman, ...etc.

agree that there *might* ....(yeah, the uncertainty of the word)...be

additional damage being done during ear or eye flares?

Don't worry about complaining....and you weren't even complaining:-)

hope you can sleeeeeep tonight,

Connie H.

> Thanks Connie H.

> That was my hunch, but I wasn't sure.

>

> If so, it sounds like the advice I keep getting from my docs when

> they want to treat me aggressively and I resist. In my case, they

> say they have to treat my whole body aggressively, even if only my

> eyes or ears, etc. are flaring because there could be other silent

> inflammation elsewhere doing mischief. It's sort of scary. So I

try

> to be a very compliant patient, but it sure is hard at times. As

we

> all know, these meds can be really rough. Oh well, enough

> complaining for now!!

>

> Sorry I went on like that.

> Sending warm wishes and gentle hugs to everyone.

> Love,

> Connie R

>

[Guest guest]

Well, it made sense to me Connie. Now what was I trying to say -- something

like " , if you're trying to be brave and not up the pred because your

ears aren't that bad, just think that inflammation of the cartilage could be

going on in all the other part of your body where you've had it

before --like your heart valves -- and you wouldn't know because you won't

feel symptoms from your heart valves being inflamed -- well, not any kind of

symptoms we'd want to have -- like heart failure and stuff " . Did

that make more sense -- was sure a lot more words...

Take care all of you out there...

Carolyn

Re: Dr. Herman's latest up to date report

> >

> >

> > > Carolyn, No, think the one I have is 1998. And no, I haven't

> caved in

> > yet,

> > > still at 10mg of pred. Going to hang in there. Not too much

> pain today,

> > > just alot of fatigue.

> > >

> > > Hope you had a good day.

> > >

> > >

> > >

> > >

> > > DISCLAIMER!!

> > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT

> IS

> > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR

> DOCTOR

> > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE

> FOR YOUR

> > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT

> AND

> > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

> > >

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>