Re: Fw: Part 1 ?? Now part 2 Ok time for part 3

[Guest guest]

In a message dated 4/8/02 7:00:11 PM Pacific Daylight Time, heidi@...

writes:

<< Now Part 3 .

What kind of support do you have at Home ??

How can your spouse and Family and friends

help you deal with RP ???

>>

Heidi, I feel I do have a wonderful support system at home. Rich and the 3

girls are great. I feel guilty at times because I think I cause them to

worry too much. My sister is in complete denial and I KNOW she worrys too

much.

The family talks about RP and my immediate family is well educated on it, or

as much as they can be.

I find it hard with Rich's family and alot of friends. They just don't

understand it. As much as they try. The best way family and friends could

help me deal with the RP is to be understanding and realize that I don't

choose to feel or look the way I do. I just want them to be supportive. To

understand that I can't always plan ahead too far. AND that I might not be

able to attend when that day comes.

I also want them to know how frustrating it is at times dealing with drs.

Those who never have to go to the dr, don't have a clue how frustrating it

is.

This is why it is sooo important for ALL of us to donate to the Foundation

and help to bring about Awareness. If you haven't made your contribution

yet, please consider it now. It will help ALL of US and all the future

RP'er.

[Guest guest]

Heidi, I'm willing to share my "story", problem is, who would believe it? Love, Judy Fw: Part 1 ?? Now part 2 Ok time for part 3 OK here we go again or did you all think I would forget ??? No way, so get that brain working and PLEASE tell us your story. For all our new members I am sending you also part one and two. Thank you all for helping each other in trying to understand this cRaP. Ok Ok you all remember how I ask for your RP story back in Nov - Dec ?? Well some of you did tell us. I want to say Thank you. If you have not done so yet we still would like to hear your Story.We might use it in our News letter with your Permission. Here is what we ask of part 1 How long did you have RP and when where you finally diagnosed ?? Now to Part 2 . How have you dealt with it since ?? What is the worst part of dealing with RP ?? Now Part 3 . What kind of support do you have at Home ?? How can your spouse and Family and friends help you deal with RP ??? Yes we will do a part 4 to later on. So please think about it and chare your story with us. This is how we learn. I thank you for being a part of this great group. Heidi 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]

Please Judy why don't you tell it. You be amazed what we have learnt from the ones that told us there's. Please!!!

Love

Heidi

Heidi, I'm willing to share my "story", problem is, who would believe it? Love, Judy

Here is what we ask of part 1

How long did you have RP and when where

you finally diagnosed ??

Now to Part 2 .

How have you dealt with it since ??

What is the worst part of dealing with RP ??

Now Part 3 .

What kind of support do you have at Home ??

How can your spouse and Family and friends

help you deal with RP ???

Yes we will do a part 4 to later on.

So please think about it and chare your story with us. This is how we learn. I thank you for being a part of this great group.

Heidi 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]

Heidi, I will, I promise. Right now my focus is all on my knee (which BTW is killing me!). Surgery is scheduled for Monday the 15th. The plan is for it to be arthroscopic. The dr will actually get a chance to see if the RP is doing anything "funny" in there. The major problem is that with the upcoming surgery, the drs have taken me off all anti-inflamatory meds. Which is all my arthritis medication. So my knee especially is twice it's normal size and incredibly painful, not to mention my hips, etc. So my challenge at this time, is just surviving until the surgery so I can take my arthritis meds again! Right now, Monday seems an awfully long way off! As soon as I can focus on something besides pain, I'll write my totally unbelievable story - heck, I don't believe it, and I lived it! Love, Judy Re: Fw: Part 1 ?? Now part 2 Ok time for part 3 Please Judy why don't you tell it. You be amazed what we have learnt from the ones that told us there's. Please!!! Love Heidi Heidi, I'm willing to share my "story", problem is, who would believe it? Love, Judy Here is what we ask of part 1 How long did you have RP and when where you finally diagnosed ?? Now to Part 2 . How have you dealt with it since ?? What is the worst part of dealing with RP ?? Now Part 3 . What kind of support do you have at Home ?? How can your spouse and Family and friends help you deal with RP ??? Yes we will do a part 4 to later on. So please think about it and chare your story with us. This is how we learn. I thank you for being a part of this great group. Heidi 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]

Judy You probably already know this but I thought I'd pass it on to be sure. I had arthoscopic surgery a few years ago and everything went well. The anesthesiologist decided to do it under spinal anesthesia because of the R.P. He gave me versed so I was in lala land the whole time. I recovered faster than the others that had knee surgery that day. They were all vomiting from the general anesthesia. Also my internist requested that the surgeon send a biopsy from the site and it turned out that there was alot of inflammatory changes he felt were consistent with Rp. He was very familiar with RP and after reading the report of the biopsy told me he was sure that rp caused the damage that neccessitated surgery. I'm sure alot of people do well under general anesthesia but after hearing how it caused flares of some members of the group I was very glad he did spinal.I hope this might help a little. The surgery went much better than I thought it would. My biggest problem was the crutches! I'm a klutz and never really got the hang of them! I hope all goes well for you. My knee is so much better than it was before. I pray everything will go well for you and you'll be up and going in no time!love Sue Park

Re: Fw: Part 1 ?? Now part 2 Ok time for part 3

Please Judy why don't you tell it. You be amazed what we have learnt from the ones that told us there's. Please!!!

Love

Heidi

Heidi, I'm willing to share my "story", problem is, who would believe it? Love, Judy

Here is what we ask of part 1

How long did you have RP and when where

you finally diagnosed ??

Now to Part 2 .

How have you dealt with it since ??

What is the worst part of dealing with RP ??

Now Part 3 .

What kind of support do you have at Home ??

How can your spouse and Family and friends

help you deal with RP ???

Yes we will do a part 4 to later on.

So please think about it and chare your story with us. This is how we learn. I thank you for being a part of this great group.

Heidi 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]

Sue, the only thing I am dreading are the crutches, too! Everything else they've done many times before, but I can't handle the crutches either. I have really small wrists whch are not very strong, and I can't hold myself up, so I end up dragging myself around, which really hurts my arm pits! I already know that will be a problem, but hopefully, assuming all goes as planned, I will only need them for one day and then I should be fine...God willing. I am actually looking forward to this, my knee is driving me nuts, so just about anything will be an improvement. Thanks! Love, Judy Re: Fw: Part 1 ?? Now part 2 Ok time for part 3 Please Judy why don't you tell it. You be amazed what we have learnt from the ones that told us there's. Please!!! Love Heidi Heidi, I'm willing to share my "story", problem is, who would believe it? Love, Judy Here is what we ask of part 1 How long did you have RP and when where you finally diagnosed ?? Now to Part 2 . How have you dealt with it since ?? What is the worst part of dealing with RP ?? Now Part 3 . What kind of support do you have at Home ?? How can your spouse and Family and friends help you deal with RP ??? Yes we will do a part 4 to later on. So please think about it and chare your story with us. This is how we learn. I thank you for being a part of this great group. Heidi 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