Re: Thanks for the warm welcome

[Guest guest]

In a message dated 2/27/02 7:51:25 AM Pacific Standard Time,

sharynn@... writes:

<<

Question: How does stress affect you all? And how many of you are

still working or does that affect you too.

>>

Sharon, YES... I think we will all agree that Stress is a major factor to us

RPer's. At least it is me. My dr told me that if I am in a really stressful

situation, to up my pred. I find it does help. I am on my way down on the

pred and am doing it very slowly. 1mg a month.

I too have fibro as to many others in the group. My doctors did the same as

yours, always blamed the fibro for all of my sypmtoms. Dont' give up, you

will find this group has a way of making you laugh so much that you forget

about your pain.

You will find so much information here it will astound you AND your doctors.

LOl

Please tell us all about your pets. We are all pet lovers.

hugs

[Guest guest]

--- sharyn1948 wrote:

> Just wanted to take a moment to thank all of you

> that have welcomed

> me here. I'm sure you all know how much that means

> to me.

>

> One thing I have found that sorta upset me was the

> lateste

> information about RP and symptoms. Dang it could

> have been written

> about me. All of these years seeing doctor after

> doctor who did

> nothing but look at me like I was nuts or a

> Hypochondriac made me so

> angry I cried. Takes a lot to make me cry and

> normally the only

> time is when I have been pushed to the end.

>

> I realize that this is a rare disease, but come

> on...what is wrong

> with this picture. I think a lot has to do with

> HMO's and the

> quality of doctors as well as other services they

> allow you.

>

> My ribcage muscles would cramp up so bad that it

> would take me to

> the ground...I was told by my Primary doctor... " Oh

> that's the FM

> Sharyn " ...no big deal.

>

> I'm being treated for so many things now it's not

> funny. Medication

> cost even with a prescription card is running close

> to $300 a

> month. And yet I wasn't feeling any better....until

> now. My teeth

> don't hurt anymore so I don't have to have any more

> pulled. Mye

> ears are not draining only to be told you clean your

> ears to much

> Sharyn.

>

> This is crazy...I'm sure what I am saying isn't new

> to any of you,

> but it just burns me that I have had to be in this

> pain for so

> long...I've been in pain so long that I have

> conditioned myself to

> tone it down and not have it get to me. Even with

> my hip being bone

> on bone...I don't feel it. I'm a very calm person

> when it comes to

> pain.

>

> I'm doing much better since being put on the

> medication. I still

> have waves of fevers or hot flashes...(no it's not

> the menapause

> kind..started that point in my live when I was 34

> and was completely

> finished with menapause by 41...doctors said that

> was normal...what

> do you think?)...I feel like I have a 104 temp...but

> it passes

> quickly. I still get a little sick to my

> stomach...but that's okay

> too.

>

> My biggest problem is the diabetes...even with the

> double dose of

> medication I still cannot get it below 260...which

> is more than

> doubled since going on the presidone. Have a call

> into my doctor

> about that one.

>

> I plan on living the best life I can...have worked

> very hard and

> have hidden a lot of my health issues and pains.

> Not going to do

> that anymore.

>

> Question: How does stress affect you all? And how

> many of you are

> still working or does that affect you too.

>

> I am stil working, but it has become very difficult

> at times to even

> get out of bed. I sorta push myself and there are a

> lot of things I

> can no longer do and need help with.

>

> Well, as you can see I'm long winded..sorry...I'll

> get better...have

> so many questions..

>

> Oh..one very important question. What are the

> chances that my

> daughter has PR? I've very worried about that.

>

> Again thanks to all of you...hopefully my next post

> I'll be able to

> tell you more where I live and all the pets I have.

>

> Hugs

>

> Sharyn

Dear Sharyn, I would also like to welcome you to the

group. My name is Liz, I am English, I work in Saudi

Arabia, but also spend quite a lot of time in Southern

California.

The bits about going the rounds of doctors is

familiar, I think, to a lot of us. I kept being told

my respiratory problems were caused by asthma, and it

was 'severe'. I was in and out of hospital and er

rooms. I was on and off prednisone for years (this

all started in around 1988. As the prednisone solved

the problem I didn't see anything wrong with this

diagnosis. A couple of docs scratched their heads and

muttered, its not typical.. at the same time I was

beginning to get painful joints and was told 'it was

because you are overweight' (I'm thinking I have pain

in my hands because I am overweight..?) I had

shoulder surgery in both shoulders (very successfully)

but my throat was SOOOO painful after surgery and I

had to go onto pred for my breathing.. it wasn't until

three years ago when my ears started getting

excruciatingly painful that I finally got a correct

diagnosis.

The good news is my rheumy put me on methotrexate and

I improved almost immediately. At the same time I

found this group which has helped ENORMOUSLY, and I

was lucky enough to get to the reunion (rather union

as it was the first!!!) in Oklahoma last year; I now

have a whole load of new and dear friends.

I am currently taking 17mg methotrexate once a week

Plaquenil daily and 5mg pred daily. I feel well most

of the time, and when I don't it is not as bad as it

used to be. I am going on a bit as I want you to know

you can and will feel better, God willing. There are

things you can do to help yourself, i.e. a little

exercise, and try to eat more green veggies.

DO go and see your doc about the sugars, I have

steroid induced diabetes, (as do several of us in the

group) and I know how tough it is, it IS important.

There are lots of new meds, I take a combination of

glucophage and glyburide. Exercise helps this a lot,

too, even if its hard to do!!!

Best of luck, look forward to seeing you post! Love

Liz

>

>

__________________________________________________

[Guest guest]

Hi Sharyn!

Welcome to this group. I am a woman at 53 from Norway. I got the RP-diognose

last year, but i know i have had my RP since i was 18. It comes and goes! Just

now i am fine. I am going on pred., 5 mg, and that's it. I am working 100 %.

Sometimes i am on 80 % - but that's because i have a husband with canser, not

because my seekness.

It's good for you to take omega 3 or eat fish with much fat.

I think you are very tired just now and your RP is on the top. You will become

better; take you a rest!

Greetings from Norway

Sissel

Thanks for the warm welcome

> Just wanted to take a moment to thank all of you that have welcomed

> me here. I'm sure you all know how much that means to me.

>

> One thing I have found that sorta upset me was the lateste

> information about RP and symptoms. Dang it could have been written

> about me. All of these years seeing doctor after doctor who did

> nothing but look at me like I was nuts or a Hypochondriac made me so

> angry I cried. Takes a lot to make me cry and normally the only

> time is when I have been pushed to the end.

>

> I realize that this is a rare disease, but come on...what is wrong

> with this picture. I think a lot has to do with HMO's and the

> quality of doctors as well as other services they allow you.

>

> My ribcage muscles would cramp up so bad that it would take me to

> the ground...I was told by my Primary doctor... " Oh that's the FM

> Sharyn " ...no big deal.

>

> I'm being treated for so many things now it's not funny. Medication

> cost even with a prescription card is running close to $300 a

> month. And yet I wasn't feeling any better....until now. My teeth

> don't hurt anymore so I don't have to have any more pulled. Mye

> ears are not draining only to be told you clean your ears to much

> Sharyn.

>

> This is crazy...I'm sure what I am saying isn't new to any of you,

> but it just burns me that I have had to be in this pain for so

> long...I've been in pain so long that I have conditioned myself to

> tone it down and not have it get to me. Even with my hip being bone

> on bone...I don't feel it. I'm a very calm person when it comes to

> pain.

>

> I'm doing much better since being put on the medication. I still

> have waves of fevers or hot flashes...(no it's not the menapause

> kind..started that point in my live when I was 34 and was completely

> finished with menapause by 41...doctors said that was normal...what

> do you think?)...I feel like I have a 104 temp...but it passes

> quickly. I still get a little sick to my stomach...but that's okay

> too.

>

> My biggest problem is the diabetes...even with the double dose of

> medication I still cannot get it below 260...which is more than

> doubled since going on the presidone. Have a call into my doctor

> about that one.

>

> I plan on living the best life I can...have worked very hard and

> have hidden a lot of my health issues and pains. Not going to do

> that anymore.

>

> Question: How does stress affect you all? And how many of you are

> still working or does that affect you too.

>

> I am stil working, but it has become very difficult at times to even

> get out of bed. I sorta push myself and there are a lot of things I

> can no longer do and need help with.

>

> Well, as you can see I'm long winded..sorry...I'll get better...have

> so many questions..

>

> Oh..one very important question. What are the chances that my

> daughter has PR? I've very worried about that.

>

> Again thanks to all of you...hopefully my next post I'll be able to

> tell you more where I live and all the pets I have.

>

> Hugs

>

> Sharyn

>

>

>

>

> 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

>

>