Update on Glenda

January 31, 2002

Hi Glenda,

So glad you went to the rheumy and had a good visit. I believe it can make all the difference to have a doctor that really listens and you can have confidence in. BTW, after reading your other post I took the colorgenics quiz -- boy was that freaky. Was going to read all the posts but I'm too tired tonight. You guys were really busy today.....guess they'll wait until tomorrow huh? Have a good evening.

Love,

-----Original Message-----From: Glenda McClennen Sent: Thursday, January 31, 2002 9:01 PMTo: Rpolychondritis Subject: Update on Glenda

Hello all

I went to the rheumy today. I was suppose to go to the PCP today but I had both appointments set for the same time. Guess which one I decided was more important?LOL I have been having a time of it the last few weeks. I tried to talk to the PCP's nurse on Tuesday and they never called me back. Imagine that. Then on Wed. hubby called to get me an appt. and they couldn't see me until this afternoon. Well that was when I remember I had a rheumy appt. today also.

I went to the rheumy and had a great visit. I really love my rheumy and am glad that he takes the time to explain things to me. I can ask him anything.

Well he asked me how I was doing? I told him that I think I am doing great as far as the RP goes but.... I have had swelling and tenderness in my neck and my left ear has been hurting off and on deep inside. I told him it didn't feel like RP but..... last night the ear got red hot... the red hot part is like RP but the rest of me doesn't feel like the RP is acting up. (Yah that made a lot of sense)

Well the rheumy checked every joint in my body and then went to the ear. Touched probed and the whole bit but found nothing wrong as far as the RP goes. Hurray!!!! Then he started in on my neck...OUCH! Well he determined that it wasn't the cartilage but the lympths were swollen on that one side. He said it appears that you have an infection starting and he put me on antibiotics. He said that sometimes infections will irritate the lympths.

We talked about the Imuran and he reassured me that he was making sure that all was going well with it. He said that Imuran isn't the greatest to have to be on but there are worse things. He said a lot of people who have kidney transplants are on Imuran forever. He also said that if I keep doing as well as I am that someday we will try to go down on the dose and even attempt going off it completely. Boy that will be a day of rejoicing. He knows how much I really hate meds.!LOL He is one Dr. who understands that I would never abuse my meds.

I definately left his office feeling better. Just wish my PCP had my best interests in mind. It is ashame that Dr.'s don't say what they really think. I was pretty upset when I went in there. For one when you take meds that say at the first sign of infection call your Dr. I do and then they don't take me serious. I hate going to the Dr. about as much as I hate the meds. I don't call unless I am sick. Guess it is time to find a new PCP.

Sorry to go on and on like this but just thought I would fill you in on what was going on with me.

Take care and know I think of you all often!

Lots of Love

Glenda

____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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

January 31, 2002

Glenda,

Good job prioritizing what was really going to be more helpful. I'm

sorry to hear that you have a possible infection, but on the other

side, I'm glad it's not a flare coming on.

Take care of yourself and let your body fight this. That translates

into " Don't overdue " . Not that I have any reason to believe that you

will really listen to that, but hey, I've got to at least try! : )

Take care and have a good Friday!

> Hello all

>

> I went to the rheumy today. I was suppose to go to the PCP today

but I had

> both appointments set for the same time. Guess which one I decided

was more

> important?LOL I have been having a time of it the last few weeks.

I tried

> to talk to the PCP's nurse on Tuesday and they never called me

back.

> Imagine that. Then on Wed. hubby called to get me an appt. and

they couldn

> t see me until this afternoon. Well that was when I remember I had

a rheumy

> appt. today also.

>

> I went to the rheumy and had a great visit. I really love my

rheumy and am

> glad that he takes the time to explain things to me. I can ask him

anything

>

> Well he asked me how I was doing? I told him that I think I am

doing great

> as far as the RP goes but.... I have had swelling and tenderness

in my neck

> and my left ear has been hurting off and on deep inside. I told

him it didn

> t feel like RP but..... last night the ear got red hot... the red

hot part

> is like RP but the rest of me doesn't feel like the RP is acting

up. (Yah

> that made a lot of sense)

>

> Well the rheumy checked every joint in my body and then went to the

ear.

> Touched probed and the whole bit but found nothing wrong as far as

the RP

> goes. Hurray!!!! Then he started in on my neck...OUCH! Well he

determined

> that it wasn't the cartilage but the lympths were swollen on that

one side.

> He said it appears that you have an infection starting and he put

me on

> antibiotics. He said that sometimes infections will irritate the

lympths.

>

> We talked about the Imuran and he reassured me that he was making

sure that

> all was going well with it. He said that Imuran isn't the greatest

to have

> to be on but there are worse things. He said a lot of people who

have

> kidney transplants are on Imuran forever. He also said that if I

keep doing

> as well as I am that someday we will try to go down on the dose and

even

> attempt going off it completely. Boy that will be a day of

rejoicing. He

> knows how much I really hate meds.!LOL He is one Dr. who

understands that I

> would never abuse my meds.

>

> I definately left his office feeling better. Just wish my PCP had

my best

> interests in mind. It is ashame that Dr.'s don't say what they

really think

> I was pretty upset when I went in there. For one when you take

meds that

> say at the first sign of infection call your Dr. I do and then

they don't

> take me serious. I hate going to the Dr. about as much as I hate

the meds.

> I don't call unless I am sick. Guess it is time to find a new PCP.

>

> Sorry to go on and on like this but just thought I would fill you

in on what

> was going on with me.

>

> Take care and know I think of you all often!

> Lots of Love

> Glenda

February 1, 2002

Oh Glenda, I'm so glad that you saw your rheumy. He sounds wonderful and I'm

so glad that he got you started on antibiotics before you were really bad.

Hope they make you feel wonderful by this weekend.

I have a terrible sore throat. Hope it goes away really quick.LOL I'm

leaving to go take care of Makeila again today. Hope she wants to take ALOT

of naps. LOL Yeah , ever see a 41/2 who wants to sleep as much as a 50 yr

old. LOL

You take care of yourself. If you guys don't hear from me tonight, you'll

know I'm fast asleep. LOL

Everyone have a great weekend.

hugs

February 1, 2002

In a message dated 1/31/02 10:08:37 PM Pacific Standard Time, mmjw3@...

writes:

<< " Don't overdue " . Not that I have any reason to believe that you

will really listen to that, but hey, I've got to at least try! : ) >>

Boy , you have that on right!! Glenda not overdo????? You have to be

kidding. LOL Glenda, we all took a vote and decided that you and Heidi are

making us look bad and you must stay in your PJ's all weekend and not do a

thing. (Yes Heidi you can were Don's). lol

hugs

February 1, 2002

LOL Hey Glenda I think what and saying here you and I can

be a bum this weekend because does two are come over to our house and do our

house work. LOL Wow now that is so nice of them. So hurry up and come on

over I make Don go to our fancy Donut shop and get us some goodies. Hey we

have to have them so we can sit back and watch and do the

house work LOL

Heidi

Boy , you have that on right!! Glenda not overdo????? You have to

be

kidding. LOL Glenda, we all took a vote and decided that you and Heidi

are

making us look bad and you must stay in your PJ's all weekend and not do a

thing. (Yes Heidi you can were Don's). lol

hugs

February 2, 2002

In a message dated 2/1/02 2:04:51 PM Pacific Standard Time, heidi@...

writes:

<< and do the

house work LOL >>

Heidi, I don't know about , but I don't do HOUSEWORK> LOL but I will

eat those donuts with you and Glenda. LOL

hugs

February 2, 2002

Hi Glenda,

I'm glad to hear your doing good with the RP, sorry to hear your battling an infection, but thank goodness it was caught in time. Sounds like you have a great and caring doctor, I can't wait to find one.

Love you lots!

Lu

February 2, 2002

Glenda Prayers are with you. am very glad that you have such a wonderful rheumy it does help. get better and God be with you, Barbara aka bj Update on Glenda Hello all I went to the rheumy today. I was suppose to go to the PCP today but I had both appointments set for the same time. Guess which one I decided was more important?LOL I have been having a time of it the last few weeks. I tried to talk to the PCP's nurse on Tuesday and they never called me back. Imagine that. Then on Wed. hubby called to get me an appt. and they couldn't see me until this afternoon. Well that was when I remember I had a rheumy appt. today also. I went to the rheumy and had a great visit. I really love my rheumy and am glad that he takes the time to explain things to me. I can ask him anything. Well he asked me how I was doing? I told him that I think I am doing great as far as the RP goes but.... I have had swelling and tenderness in my neck and my left ear has been hurting off and on deep inside. I told him it didn't feel like RP but..... last night the ear got red hot... the red hot part is like RP but the rest of me doesn't feel like the RP is acting up. (Yah that made a lot of sense) Well the rheumy checked every joint in my body and then went to the ear. Touched probed and the whole bit but found nothing wrong as far as the RP goes. Hurray!!!! Then he started in on my neck...OUCH! Well he determined that it wasn't the cartilage but the lympths were swollen on that one side. He said it appears that you have an infection starting and he put me on antibiotics. He said that sometimes infections will irritate the lympths. We talked about the Imuran and he reassured me that he was making sure that all was going well with it. He said that Imuran isn't the greatest to have to be on but there are worse things. He said a lot of people who have kidney transplants are on Imuran forever. He also said that if I keep doing as well as I am that someday we will try to go down on the dose and even attempt going off it completely. Boy that will be a day of rejoicing. He knows how much I really hate meds.!LOL He is one Dr. who understands that I would never abuse my meds. I definately left his office feeling better. Just wish my PCP had my best interests in mind. It is ashame that Dr.'s don't say what they really think. I was pretty upset when I went in there. For one when you take meds that say at the first sign of infection call your Dr. I do and then they don't take me serious. I hate going to the Dr. about as much as I hate the meds. I don't call unless I am sick. Guess it is time to find a new PCP. Sorry to go on and on like this but just thought I would fill you in on what was going on with me. Take care and know I think of you all often! Lots of Love Glenda ____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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

February 12, 2002

Glenda,

I'm really sorry you're struggling with the flare and that your BP

went up again so quickly. That's got to be frustrating. I'm

starting to exercise by walking, but my BP has been fine so far.

Hang in there with all of that!!!

What type of imaging do they do for the night sweats? I have had

them for the entire two months that I've had this flare, and I wake

up, literally, with my pajamas soaking wet on top and bottoms. That's

probably more information than anyone wanted to know!!!

Well, take care and know that my thoughts have been with you.

February 13, 2002

Glenda,

Glad to hear you feel somewhat OK! As for the BP, 25 mg of Prednisone

will do that to people 140 is not uncommon. As for the " thrush, " try

to eat some yogurt 2 X's a day and see if that helps. If it should

get worse go back to the DR! There is a Med called Diflucan that can

help! It was my saving grace way back when I was on 40 - 60 mg of

Pred. At one point the yeast was so bad I had to have endoscopy to

remove the plaque's from esophagus and gullet (sp?)......was not fun!

When I am not on Pred my BP is 103/60 now whenever I go back it, it

is always 140s. The funny thing I laugh at is when our DR's tell us

to exercise when we don't feel good and when we are on drugs!

Although I try. I was very nice to hear from you!

Love,

~

> Good Evening all!

> Well I thought I would post you all and tell you I am still out

here!LOL Also I hope you are all doing well. Thanks everyone for

the wonderful jokes and uplifting things that you all send!

>

> Now for my news. I called the rheumy today and told him I am

holding my own with the RP flare. It is now at a dull roar. I told

the rheumy's nurse what was going on with my mouth. Thought I might

have thrush from the darn antibiotics I took last week for the

swollen lymph's. Well it wasn't thrush or anything of that nature.

>

> Dr. took a culture and said that my tongue was definitely coated

but there was nothing unusual there.LOL I guess that is good to

know. Anyway he thinks it maybe due to the flare being so close to

the tissue in my mouth that is causing the irritation.

>

> Now for the fun news...NOT!! My BP was 140/100 again. I

surrender. All that work I went through getting it down was for

naught. I am on 25mg of pred today and go to 20 tomorrow. Pred is

the reason BP went up in the first place. Anyway he told me to

exercise, and watch diet. Doesn't want to add another med right now

because the BP problem maybe due to the flare. So I am at square

one.

>

> The Dr. then sent me over to the medical imaging place because I

complained about having nights sweats and never having a problem

until I started the atenolol for the BP problem. He said it didn't

sound like the change of life and didn't go into why he wanted a

chest x-ray done but wanted the information faxed to their office.

It got late so I will have to call them tomorrow to see what they

found out. Anyway at least you can't say I haven't been through the

mill today!LOL

>

> Know I think of you all often and please don't worry about me. I

am doing fine really just can't get the BP where it belongs.LOL

Flare is under control so that is the main thing. Now and

Dawn wont be mad at me for not posting to let them know how I am

doing! )

>

> Lots of love

> Glenda

February 13, 2002

Hi Glenda :-)

Thanks for your update.....even though I haven't been posting much

lately, I really worry about you!! (can't help it :-) I'm glad

you're staying in close contact with your doctors, though. Darn old

RP and blood pressure, right? You'll get it all under control once

again.

Sending lots of love and hugs to you and everyone,

love,

Connie H.

> Good Evening all!

> Well I thought I would post you all and tell you I am still out

here!LOL

April 19, 2002

Hi All,

Thought I should let you know what is going on in my world. A few of you already know and are keeping tabs on me!LOL

I am still having a time of it. I am hoping all is unrelated to the RP. Most of my problems are caused from the meds I have taken or the side effects.

My BP is still high. It is 150/100. Tomorrow I am calling around for a new PCP. Have finally had it!

This week everything has taken a back seat to my tooth or lack of it now. I had a tooth pulled. It was a perfectly good tooth but the jaw bone deteriorated and an infection set in. I went to the dentist and they pulled the tooth but didn't put me on an antibiotic. I was one sick puppy.LOL I went back in yesterday to get the antibiotic and already starting to feel better but think it is the ibeprohin that is helping me.

The reason I fired my PCP for sure this time was that I had called into get an antibiotic to go to the dentist and couldn't even get past the receptionist. She said the dr. has nothing to do with the teeth. So guess who I called next...my rheumy.

Rheumy prescribed the antibiotic to go see the dentist. Just enough to take before and after like I normally do. This is one of the reasons I quit seeing the dentist so often because it was such a hassle to get antibiotic.

Needless to say rheumy was a little upset and very concerned. I asked if they could recommend a good PCP. I now have three names to check out.

The rheumy's nurse called me back yesterday to give me the names and see how I was doing. Had a fit when I told her no antibiotics and how bad the infection was. She said to get back in there to the dentist and make sure they stay on top of it.

Sometimes a suppressed immune system can be a pain in the b...

I know what should and shouldn't be done because I have been on these meds for so long. Explaining it to a dentist or a doctor can really be difficult to say the least. At least I am on the mend for the tooth episode.

Lets see my other problems...on yah the hormone thing has settled down too. Soy and the healthy woman vitamins really help. I can sleep all night and not have night sweats! Hurrah!

I actually don't feel like Dr. Jeykl and Mr. Hyde anymore.LOL Bet my hubby is glad for that.

At the end of this month I am going to see a urologist. It seems that my PCP found blood in the urine. I asked him well haven't you found this before? He said I have? He then looked at the chart and said yes you had it in 2000. And yes another good reason to fire him!LOL I have been reading posts and am hoping that the kidney thing is just kidney stones due to the amount of calcium that I take. I know wishful thinking.

At any rate I am doing better now that they found part of the problem. (tooth) I think that the tooth may have been causing problems for sometime. Might even have been what was making me so tired. My body was attempting to fight an infection. Sad thing is I have been to the PCP so much lately I am surprised they didn't find something sooner. I had been so tired I was coming home from work and going right to bed practically.

Well I am off today to find a new PCP. Wish me luck! I will try to stay in better touch with the group now that I am feeling a little better and hope to be up to speed real soon. Can't keep me down for long that is for sure. I wont have it!

BTW for those of you who keep up with me....sister goes in Monday for the ultrasound on her legs. She is going to have a third surgery on same. The new artery that they put in last July has now plugged up twice. Please keep her in your thoughts and prayers. The last time the surgeon said he didn't know if he could save her legs.

Know I think of you all often and have missed you all by not being able to post like I should.

Take care

Lots of love

Glenda

April 19, 2002

Hi Glenda,

I will be praying you find the best PCP doctor around. Also that your get your blood pressure under control. Hey do you take a baby aspirin?

I'll also be praying for you sister, bless her heart she has had too much going on herself.

You take care, & get well soon.

Love,

LU

April 19, 2002

Glenda,

Wishing you luck on finding a new PCP.

Glad you got the antibiotic.

I'm having the same problem, got a couple of loose teeth due to the deterioration of my jaw.

I'm keeping my fingers crossed that the new PCP will be able to help get your blood pressure down.

Also will continue to keep your sister in my prayers. Boy, she has had a rough time of it.

Hugs,

Sandy