Re: Afternoon All

May 18, 2001

In a message dated 05/15/2001 2:52:21 PM Central Daylight Time,

eyeoreluv@... writes:

<< Wow a doctor who listens. That is scary! >>

Glenda, makes me reallze what wonderful doctors I have. I hope this all works

and you feel better fast. Love, Judy

May 18, 2001

In a message dated 05/15/2001 5:24:40 PM Central Daylight Time,

grandm4@... writes:

<< i Glenda, I ususally take Ceftin for sinus infections >>

Glenda, I used to have chronicm, unending sinus infections. I had surgery on

them to create them, they were so blocked they had to clean them out and

recreate them. At one point, I was on Vancomycin IV's everyday for three

months. Got off it and bang, two months later I was back at square one.

Finally, my allergist tried Duratuss (Guafinex) 1500 mgs twice a day, and I

haven't had an infection since! Who knew? Have you looked into this? I

have no clue why this worked when more extreme measures did nothing, but it

did! If I accidentally skip a dose, I can immediately feel the difference!

Hope this could help you too! Love, Judy (I know what it feels like to have

a burning knife thrust into your eye and into your cheekbones and believe me,

I don't want to go back there!) Good luck! Love, Judy

May 18, 2001

In a message dated 05/16/2001 8:52:58 AM Central Daylight Time,

grandm4@... writes:

<< Hi again, doctor also gave me sample of Flonase, nasal spray. Seems to

work.. >>

Sue, how often do you use the Flonase? My doctor had me spraying once in the

AM and once inthe PM. I got incredible nosebleeds, so the stopped

prescribing them. If you are supposed to use them twice a day, please ask

your doctor about it. I wonder if I had been told to spray just once a

day,if I would still be able to use it. Love, Judy

May 18, 2001

Dear Judy, I never got nose bleeds. if I feel plugged up or a sinus thing I

just use it. Hold it... I did get a couple nose bleeds but not a big

deal...It just seemed to help ward off the sinus infection.. Sue

November 3, 2001

Hi Glenda,

I don't send a lot of posts, but felt like I needed to respond to yours!! I

think your Dr. is " NUTS " !!! I especially don't think that you have a bad

attitude!! If you are half as joyful in person as you are in your posts

then I think you are a pretty great person with a wonderful attitutde!! You

have no idea what your posts do to help my day!! As for your B/P-- do you

really think it was elevated enough to add another medication or do you

think it could have been elevated because of your anxiety over the Dr.s

appt.?? As a nurse, I see this happen to a lot of patients-- the Dr.

doesn't take this into consideration, adds another B/P medication and the

next thing you know their B/p has bottomed out!! Just a thought-- you know

how your B/p is running. If your B/P is truly elevated enough to require

another medication then he did the right thing!! As far as your RP-- what

kind of an expert is he in RP?????? It was my understanding that their

aren't a lot of experts out there and no one really knows what to expect.

RP is like any other autoimmune disorder-- the most predictable thing you

can say about it is that it is UNPREDICTABLE!!!

As far as the flu shot goes-- you are right, their is a lot of controversy

over giving it to people with autoimmune disorders!! I think the mainstream

thinking right now is to error on the side of caution and give it!! My

rhuematologist does something I have never seen another physician do and

that is that she gives it in 2 divided doses to people with autoimmune

disorders. She gives half of the injection and in 7 days the other half.

She said that most people have done very well with this and that even if

they are only getting half of the benefit, it is better than no benefit at

all. What kind of work do you do that exposes you to shingles and TB???

With the medicine you are on, that sounds like a risk and your Dr. needs to

pay attention and offer you some sound advice instead of treating you like

you are whining!!! Anyway, like I said before, I don't know you but I do

know how many times your posts have lifted my spirits!! Thanks and I hope

you have a better day!!

Kathi

>

>Reply-To: Rpolychondritis

>To: <Rpolychondritis >

>Subject: Afternoon All

>Date: Sat, 3 Nov 2001 13:54:56 -0800

>

>Afternoon All

>I hope this finds you all well! I just thought I should let you all know

>what is going on with me. You know how much I hate to complain and that I

>don't normally do this but thought I should or could because no one but you

>would understand where I am coming from.

>

>Here goes... I went to the Rhuemy on Thursday and I am doing great as far

>as it goes with the RP. He said a few things that made me wonder and

>really would be nice if they were true but I don't think they really are.

>He said that I would probably not get any worse with the RP than I am now.

>He said that I have had it for so long that if I was going to have major

>problems I would have already. I just sat there and looked like a dork.

>The reason he said this was due to my talking about all the people I got to

>see in Okieland and how some were effected.

>

>Okay this is just my thoughts but I think he is way out in left field.

>Where he gets his ideas I don't know. Sure I am not doing bad because the

>meds are working but.... what happens on down the line when the RP decides

>it want so rear it's ugly head. Besides the cartilage is still

>deteriorating and keeps doing so even on the Imuran.

>

>Oh Yah he also told me that people with auto immune diseases shouldn't get

>the flu shots. Unless they have had problems with the flu and or have

>taken them before with out any problems. They work on your immune system

>which could cause problems is what he said. At any rate he wrote me a note

>for my PCP but I still haven't gotten the shot due to the PCP being out and

>now I have to find a drug store that will give it to me.

>

>I am not looking for trouble in no way, and don't I want to be worse

>ever!!! Please give me your thoughts or input on this one. You know how

>we do when we brain storm.

>

>Now for the news that has me down. I went to my PCP yesterday due to the

>problem that the Rhuemy found. My blood pressure is up again. I was

>already on diaziade and now he has put me on a beta blocker. He was going

>to try another but it interfered with the Imuran.(at least he looked) He

>wants to see me in three weeks to see how I am doing. I am so frustrated

>with the Dr. He is the one that his receptionist said I wasn't a high risk

>patient. I now have a note to state that I am and the PCP said the next

>time I run into any problems request to talk to the nurse. I was down

>before I went in there because I felt so bad from the high BP but he didn't

>make me feel any better.

>

>Why is it when you try to explain your dilemmas to them that they act like

>you are whining. I mentioned something to him about being exposed to

>shingles and about having to be around people with possible TB. I also

>said I have a pretty stressful job. He asked what I did for fun and I told

>him and he didn't think that was good enough to relieve the stress. I said

>well you can hardly get out and party when you have a 6 yr. old around. He

>said I have a bad attitude about life. Well I don't think so but I guess

>maybe I could.... Of course anyone who saw me in Okieland knows how much I

>enjoy to cut up.

>

>PCP also said if I don't get the BP under control I will either have a

>stroke or a heart attack. I am not happy about the extra med and the

>reason I have the problem with the BP is due to the damn pred. That is

>what caused it to go up and now it wont go down.

>

>Oh heck I will shut up now but just had to let you know where I am coming

>from right now. Now you know why I didn't post there for awhile and why I

>have been so quiet. I am trying to deal with stuff around her!LOL

>

>Take care all and please let me know what you think! Am I just being

>stupid her or are they both full of doody! Sorry to have gone on so much

>but I need your input! If I am the one being the poop kick me in the butt

>please!

>Lots of Love

>Glenda

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

November 3, 2001