Re: Pete

December 4, 1999

In a message dated 12/4/99 11:28:31 PM Central Standard Time,

Baaboo19@... writes:

<< Hi- I was just going to tell you all Pete atarted having a " flare " (at

least

that's what I called it on Thursday he started losing his hearing in his

" good " ear so he's taking 15 of pred a day for 5 days and then we'll go back

to his 6(coming down 2mg every other day) ...I know pred has alot of side

effects but it sure does the job..the " loss " stopped dead in its tracks..of

course it makes him very racey and he gets so hungry and he usually has very

little problem sleeping but now needs help with that for a few days.... >>

Janet, you and Pete will be in our prayers, hopefully the flare will

disappear soon. Take care and keep us posted.

Love,

Lu

December 6, 1999

Sorry to hear about Pete's flare. Hope the pred does the work.

B.

Burdick

Circulation/Interlibrary Loan Phone:

Yale Divinity Library Fax:

409 Prospect Street email: susan.burdick@...

New Haven, CT

December 7, 1999

Janet, I hope Pete is doing better by now. You both are in my prayers.

Ronnie

December 14, 1999

Hi all- Just an update...Pete went to the doc today---the pred had stopped

the flare but in coming back down it started up again--sooo today and

tomorrow he gets 40mg--the next day 30mg etc, etc...We just don't want Pete

to loose the little bit of hearing he has left...He gets REAL hungry when he

takes that much and he also has had his sugar go way up so he'll have to be

careful what he eats..Hope everyone is doing okay..The weather here is rainy

and cold which Pete doesn't like either because it makes him feel all stuffed

up.TTYL JNET

December 14, 1999

Sorry, Janet, I sent my message before reading this one. Praying for Pete

and you.

Love and God Bless,

Jo

Re: Pete

>From: Baaboo19@...

>

>Hi all- Just an update...Pete went to the doc today---the pred had stopped

>the flare but in coming back down it started up again--sooo today and

>tomorrow he gets 40mg--the next day 30mg etc, etc...We just don't want Pete

>to loose the little bit of hearing he has left...He gets REAL hungry when

he

>takes that much and he also has had his sugar go way up so he'll have to be

>careful what he eats..Hope everyone is doing okay..The weather here is

rainy

>and cold which Pete doesn't like either because it makes him feel all

stuffed

>up.TTYL JNET

>

>>hi and welcome. maybe we can come up with answers that our doctors can't

>

December 14, 1999

In a message dated 12/14/99 8:39:01 PM Central Standard Time,

susuw@... writes:

<< Winter is hell on people with autoimmune diseases I know. >>

Why is this? That is when I got real sick last year (havent gotten 100%

better yet still waiting LOL).

December 14, 1999

In a message dated 12/14/99 12:50:51 PM Central Standard Time,

Baaboo19@... writes:

<< the pred had stopped

the flare but in coming back down it started up again-- >>

Hi Janet,

I'm glad the pred. stopped the flare. Maybe it won't take too long to come

back down. You guys are in my prayers...Tell Pete Lu said Hello !

Janet can he get a hearing aid ? Or would that not help? Has he lost the

hearing in one ear? I know I read your history thingy, but I forgot...I will

have to go back and reread it...Sorry...

Love you

Lu

December 14, 1999

In a message dated 12/14/99 10:07:46 PM Central Standard Time,

Idigflower@... writes:

<< Why is this? That is when I got real sick last year (havent gotten 100%

better yet still waiting LOL). >>

I think its the cold weather hurts are aching joints, you know the old saying

you can tell when its going to rain...because your bones hurt. LOL

Lu

December 14, 1999

Janet,

I'll keep my fingers crossed that Pete can go down on the Pred without

another flare. Winter is hell on people with autoimmune diseases I know.

It's been cold and rainy here too and the ole body really feels it. Let us

know how Pete does and I'll keep my fingers crossed that he can reduce the

Pred without another flare this time.

>>>>>>>>>>>>>>>>>

From: Baaboo19@...

Hi all- Just an update...Pete went to the doc today---the pred had stopped

the flare but in coming back down it started up again--sooo today and

tomorrow he gets 40mg--the next day 30mg etc, etc...We just don't want Pete

to loose the little bit of hearing he has left...He gets REAL hungry when he

takes that much and he also has had his sugar go way up so he'll have to be

careful what he eats..Hope everyone is doing okay..The weather here is rainy

and cold which Pete doesn't like either because it makes him feel all

stuffed

up.TTYL JNET

December 15, 1999

In a message dated 12/15/1999 5:51:18 AM Eastern Standard Time,

susuw@... writes:

<< All I know P. is, winter is my worse season. I get more crap in

winter

and I feel my worse too. I guess it's the cold seeping into the ole bones

and all the germs seem to thrive this time of year.

>>

Hi- What about people who live where there is no winter " cold " ????Janet

December 15, 1999

In a message dated 12/15/99 7:57:46 AM Central Standard Time,

Baaboo19@... writes:

<< winter is my worse season. I get more crap in

winter

and I feel my worse too. I guess it's the cold seeping into the ole bones

and all the germs seem to thrive this time of year.

>>

Hi- What about people who live where there is no winter " cold " ????Janet >>

Good point Janet, do you think they would let us all come stay with them

until it warms up? LOL

Lu

Hey guys I know I am being sooo silly but gosh, we all need to laugh!!!!!!

I love you all, and you all are in my prayers.

Take care,

Lu

December 15, 1999

All I know P. is, winter is my worse season. I get more crap in winter

and I feel my worse too. I guess it's the cold seeping into the ole bones

and all the germs seem to thrive this time of year.

>>>>>>>>>>>>>>>

<< Winter is hell on people with autoimmune diseases I know. >>

Why is this? That is when I got real sick last year (havent gotten 100%

better yet still waiting LOL).

December 15, 1999

Hey Lu,

This sounds like a good answer to me. Anyone here live in Hawaii?????

>>>>>>>>>>>>>>>>

Hi- What about people who live where there is no winter " cold " ????Janet >>

Good point Janet, do you think they would let us all come stay with them

until it warms up? LOL

Lu

Hey guys I know I am being sooo silly but gosh, we all need to laugh!!!!!!

I love you all, and you all are in my prayers.

Take care,

Lu

December 18, 1999

Hi all--well Pete is in the " relapsing " mode of the Polychondritis. His sed

rate is up 1st time in over a year and he has back and hip pain which he

never had before..he has lost more of his hearing..He's on 40 of pred a day

for a week which quickly brought back some of the hearing and the pain is

gone from hips and back....of course the pred gives him unbelievable mood

swings and he apologizes for that--I told him compared to what he's going

thru we can deal with the mood swings...no sweat. My kids are grown-ups and

they have been super, I don't know what I'd do without them..we are so

blessed. Someone asked about a hearing aid. Pete had gotten one about a year

ago--some new digital one..if he is having a good day it works and he can

hear better but most of the time all it does is increase the volume of the

distortions..he wears it in his lright ear where he has some hearing left..in

the left ear there is 95% loss so no need for a hearing aid. Anyway and so it

goes...Everyone is in my thoughts and prayers Janet

December 18, 1999

Janet, What a lady you are! I am so sorry Mr. Pete does not feel well .

You truly are the wind beneath his wings, and I can say because I have RP we

are sorry for the mood swings, its so hard on us to treat our family this way

sometimes but we cant help it and by no means mean it, then we feel sooooo

bad for snapping at the smallest things, its a maricle my husband and family

have not abandoned me yet for the way I act sometimes. (I shock myself

sometimes.) The Pred is a drug we all truly LOVE TO HATE! but it is my life

line along with every one else.

Christmas is a hard time to be sick because you feel like you have to live up

to the Christmas " Thing " what ever that is, and be happy and smile for all

our friends and family, so I am a bit depressed (1st time I have admitted

it), I wish I could skip Christmas this year or just sleep through it, I do

not want people that have not seen me in long time to see me now the way my

face looks, but I will get through it some how and the hell to them if they

stare at me, at the cleaners the other day the Chinese lady owner said to me

" WOW, your face so FAT you need go on diet " all I could think of was " you

just lost my business BITCH " But I just smiled and turned around and walked

out with my clothes, this is what I have been going through lately, then

after people say stuff like that you need to go home and be happy, well its

so hard for me then I feel sorry for myself and lash out at my family, I feel

so bad after I do it then I say I had a bad day and my husband just hugs me

and says I am beautiful and he understands, he is so sweet to me, and I love

him more then anything in the world for his understanding and patience with

me I just hope I don't damage my daughter with my curl words and yelling

sometimes, before a year ago people used to say to me I am the perfect mother

they wished they had the patience I had, if they only knew the truth now.

Please give Pete a BEAR hug for me, and always be there for him he loves you

so much and needs your continuing support.

Love,

December 18, 1999

Janet

I am so sorry to hear an\bout Pete relapsing. he was giving me hope by being

" controlled " forsuch a long period of time.

I had to find a new rheumy and I had my first visit Wed with him. He spent 2

hours with me. I think I just became a fascinating case study. I am not sure

If I like that or not. He is getting me in to see the chief of rheumy at one

of philly;s leading teaching hospitals. and he added a few new meds, he

didn't take me off anything just added, like I really needd to take more

pills a day. I lost count now how many this makes.

Hopeing Pete gets back to normal real soon, keeping him in my prayers

Love and Gentle Hugs,

Angie

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December 18, 1999

There are times when we all wish the world would just go away. Iknow I am

there right now myself. I am back on a super high dose of pred and I am a

real bitch right now. I do much better not being around people at all when I

am high doses. I also have had a few other meds added to the mix and I

genuinely feel like crap. BUT I go on and am trying to function as close to

normal as possible, Jerry did most of the decorating in here, and I made the

batter or dough for some cookied and he finished making them. I did all my

shopping online and JC Penny even gift wrapped for me. I found ways to make

the holidays a little easier on me because that is a major consideration

right now. I will be good to no one if I am totally down and in pain.

Love and Gentle Hugs,

Angie

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write to elfieluvsU@...

December 19, 1999

Hi Angie,

If I lived near you I would be there helping you my friend..... I hope you

are feeling better...I love you

Lu

December 19, 1999

thanks Jo but I will overcome this setback too!

Love and Gentle Hugs,

Angie

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write to elfieluvsU@...