Re: Looks

[Guest guest]

Sandy,

Rene here, I LOVE YOU.

TAKE CARE

Rene'

[Guest guest]

Sandy,

Yes, I did, my feet swell so badly. One thing I did was take my Pred and

other meds before I started walking. Just do a little, maybe you should just

do it for a few mins and then gradually build yourself up. Don't over do it.

Oh, Sandy, I can't tell you how much my ears and throat hurt when I first

started. I had to drink water in order to bare the pain. I didn't know how

much you actually inhaled when you walked. Try to be consistent, that's the

main key. If you just walk for 3mins, do it everyday. You will see results. I

also sweated a great deal. The water would just run down my back. My clothes

were soaked. I thought this was good for me. In two weeks I noticed a change

in the amount of pain I was in and I actually loss some weight. I'm still

having a great deal of problems accepting the that fact that I cannot work.

So this gives me something to look forward to. I still have pain in my ears

and my left leg, will who knows what's wrong with that. I have had biopsies

and really they don't know what's wrong w/it. I believe it is the nerve is

this left leg. I'm going to cont to walk and drink water. I feel better, so

that is all that matters at this point in my life.

Love and squeezes,

Rene'

[Guest guest]

Rene,

I would like to try the walking but it is difficult for me. I have severe

pain in my leg muscles and swollen feet and ankles. I use a wheelchair when

I leave the house because I can't walk very far.I have not found anything

that relieves the leg pain. Did

you have trouble with leg pain?

Love Ya,

Sandy

Re: Looks

> In a message dated 8/7/00 11:25:44 PM Eastern Daylight Time,

> carmela999@... writes:

>

> << it's a struggle but i think i'm ready to do

> battle again... >>

>

>

> Rene' here,

>

> Before I was dx w/RP back in June, 99 I was wearing a size 4 & 6 petite, it

was

> very difficult for me to accept the weight gain. I never had a problem

> w/weight in my life. I'm only 5'1'' tall and very small bones. I don't

think

> I would have had a hard time accepting my weight if it wasn't medically

> induced. I always ate like a bird anyway. However, the biggest problem

came

> when I could no longer lift my leg up to tie my shoes. It was just

disgusting

> to me. Everything started to be a chore. When I sit down on the floor I

had

> to get my son to come and help me get up. I was so depressed. To add to

that

> my own sister who hadn't seen me for a few months did not recognize me.

Will

> the stories can go on and on. Someone ask how do you lose the weight

while

> taking Pred? Here's my answer, just try to eat the same way you ate before

> you started taking Pred. I know it's hard, but I'm living proof that it

can

> work. I can remember one time, I sit down at the table and ate 6 grilled

> cheese sandwiches. Another time I actually ate a half loaf of bread and I

> still was hungry. I knew I had to do something. Another thing, Sandy as

far

> as the hump at the base of the neck, it will also disappear if you walk

and

> your face will go down also. I'm not saying it will all disappear, but it

> actually help reduced those areas where Pred. settles in on the body. If

you

> can just walk for 15 mins in your house. I didn't tell you why I started

> walking in the house and not outside. Well, the reason for that is, I

didn't

> trust my health enough to walk in the park I was afraid I would faint. Oh,

> before I forget, I also do vowel exercise for my neck. Just say the

vowels

> and it helps reduce weight on your neck and takes the double chin thing

away.

> Try it, honestly it works. I noticed that when I walk it relaxes me. It

> gives me that one on one time I need for myself. If it is at all possible,

> give this a try.

>

> Love you all,

>

> Rene'

>

>

>

> 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

>

[Guest guest]

Hi Sandy

sorry for butting in here, but i posted a question regarding massage therapy

for swelling etc, and i'm also wondering if physiotherapy would work for leg

pain and strengthening muscles...?? Perhaps you can ask your doc to

consider referring you for some treatments and see if it may work for you.

btw, how is your Urea levels (uric acid)?

Love ya

Carmela

************************

>

>Reply-To: Rpolychondritisegroups

>To: <Rpolychondritisegroups>

>Subject: Re: Looks

>Date: Tue, 8 Aug 2000 13:58:08 -0400

>

>Rene,

>

>I would like to try the walking but it is difficult for me. I have severe

>pain in my leg muscles and swollen feet and ankles. I use a wheelchair when

>I leave the house because I can't walk very far.I have not found anything

>that relieves the leg pain. Did

>you have trouble with leg pain?

>

>Love Ya,

>Sandy

>

>

> Re: Looks

>

>

> > In a message dated 8/7/00 11:25:44 PM Eastern Daylight Time,

> > carmela999@... writes:

> >

> > << it's a struggle but i think i'm ready to do

> > battle again... >>

> >

> >

> > Rene' here,

> >

> > Before I was dx w/RP back in June, 99 I was wearing a size 4 & 6 petite,

>it

>was

> > very difficult for me to accept the weight gain. I never had a problem

> > w/weight in my life. I'm only 5'1'' tall and very small bones. I don't

>think

> > I would have had a hard time accepting my weight if it wasn't medically

> > induced. I always ate like a bird anyway. However, the biggest problem

>came

> > when I could no longer lift my leg up to tie my shoes. It was just

>disgusting

> > to me. Everything started to be a chore. When I sit down on the floor I

>had

> > to get my son to come and help me get up. I was so depressed. To add to

>that

> > my own sister who hadn't seen me for a few months did not recognize me.

>Will

> > the stories can go on and on. Someone ask how do you lose the weight

>while

> > taking Pred? Here's my answer, just try to eat the same way you ate

>before

> > you started taking Pred. I know it's hard, but I'm living proof that it

>can

> > work. I can remember one time, I sit down at the table and ate 6 grilled

> > cheese sandwiches. Another time I actually ate a half loaf of bread and

>I

> > still was hungry. I knew I had to do something. Another thing, Sandy as

>far

> > as the hump at the base of the neck, it will also disappear if you walk

>and

> > your face will go down also. I'm not saying it will all disappear, but

>it

> > actually help reduced those areas where Pred. settles in on the body.

>If

>you

> > can just walk for 15 mins in your house. I didn't tell you why I started

> > walking in the house and not outside. Well, the reason for that is, I

>didn't

> > trust my health enough to walk in the park I was afraid I would faint.

>Oh,

> > before I forget, I also do vowel exercise for my neck. Just say the

>vowels

> > and it helps reduce weight on your neck and takes the double chin thing

>away.

> > Try it, honestly it works. I noticed that when I walk it relaxes me. It

> > gives me that one on one time I need for myself. If it is at all

>possible,

> > give this a try.

> >

> > Love you all,

> >

> > Rene'

> >

> >

> >

> > 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

> >

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Sandy, here. I have severe leg pain. No body knows why. Each dr

just shakes his head yes and then off to something else. Do you know what

causes yours? Guess I won't ask if you know a cure cuz your legs still

hurt!LOL

Hope you are feeling better today. How is your breathing? Please take care

and know that you are in my thoughts and prayers.

Love & hugs

[Guest guest]

Carmela,

Never considered Massage Therapy. I will have to check with my Doctor.I do

not know what my latest uric level is.

I have to call my doc on Thursday, I will check it out.

Would the uric acid level have anything to do with the swelling?

Hugs,

Sandy

Re: Looks

> >

> >

> > > In a message dated 8/7/00 11:25:44 PM Eastern Daylight Time,

> > > carmela999@... writes:

> > >

> > > << it's a struggle but i think i'm ready to do

> > > battle again... >>

> > >

> > >

> > > Rene' here,

> > >

> > > Before I was dx w/RP back in June, 99 I was wearing a size 4 & 6 petite,

> >it

> >was

> > > very difficult for me to accept the weight gain. I never had a

problem

> > > w/weight in my life. I'm only 5'1'' tall and very small bones. I don't

> >think

> > > I would have had a hard time accepting my weight if it wasn't

medically

> > > induced. I always ate like a bird anyway. However, the biggest

problem

> >came

> > > when I could no longer lift my leg up to tie my shoes. It was just

> >disgusting

> > > to me. Everything started to be a chore. When I sit down on the floor

I

> >had

> > > to get my son to come and help me get up. I was so depressed. To add

to

> >that

> > > my own sister who hadn't seen me for a few months did not recognize

me.

> >Will

> > > the stories can go on and on. Someone ask how do you lose the weight

> >while

> > > taking Pred? Here's my answer, just try to eat the same way you ate

> >before

> > > you started taking Pred. I know it's hard, but I'm living proof that

it

> >can

> > > work. I can remember one time, I sit down at the table and ate 6

grilled

> > > cheese sandwiches. Another time I actually ate a half loaf of bread

and

> >I

> > > still was hungry. I knew I had to do something. Another thing, Sandy

as

> >far

> > > as the hump at the base of the neck, it will also disappear if you

walk

> >and

> > > your face will go down also. I'm not saying it will all disappear,

but

> >it

> > > actually help reduced those areas where Pred. settles in on the body.

> >If

> >you

> > > can just walk for 15 mins in your house. I didn't tell you why I

started

> > > walking in the house and not outside. Well, the reason for that is, I

> >didn't

> > > trust my health enough to walk in the park I was afraid I would faint.

> >Oh,

> > > before I forget, I also do vowel exercise for my neck. Just say the

> >vowels

> > > and it helps reduce weight on your neck and takes the double chin

thing

> >away.

> > > Try it, honestly it works. I noticed that when I walk it relaxes me.

It

> > > gives me that one on one time I need for myself. If it is at all

> >possible,

> > > give this a try.

> > >

> > > Love you all,

> > >

> > > Rene'

> > >

> > >

> > >

> > > 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

> > >

> >

>

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

>

>

>

> 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

>

[Guest guest]

,

I don't know what causes the leg pain, never got an answer from my MD

either. I haven't found anything that helps either. I can't sleep at night

because of the pain.

Hugs,

Sandy

Re: Looks

> Sandy, here. I have severe leg pain. No body knows why. Each dr

> just shakes his head yes and then off to something else. Do you know what

> causes yours? Guess I won't ask if you know a cure cuz your legs still

> hurt!LOL

>

> Hope you are feeling better today. How is your breathing? Please take

care

> and know that you are in my thoughts and prayers.

>

> Love & hugs

>

>

>

>

> 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

>

[Guest guest]

Lu, and

May be I'm nuts, but do you remember from Ill.'s having a lot a leg,

pain. Did she go to PT for that? Was it due to her pred? I don't remember.

Help! Help!

Sandy, How much pred are you on? Sandy, thought I was going to have the

opportunity to see you this weekend we were head for Toledo, but now our trip

is canceled, so I guess I'll just have to call you. I'm a good distance away

from you here in Fairborn, Ohio. Fairborn, Ohio is 1 hour away from

Columbus, Ohio. May be I can get to take a day off from work and get

there to see you. I'll talk to him on the phone and see what he has to say

about it. I'm looking forward to meeting you in person.

Love and Squeezes,

Rene'