old post from Hobbs

[Guest guest]

From: Hob@...

Date: Sat Aug 26, 2000 7:47 pm

Subject: The list can be a downer for Newbies

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Dear Newbies,

My reaction to the problems posted by list members when I first joined the

list was exactly like yours. It made me very anxious and depressed about my

own future. I happened to join the list when some particularly serious

problems were being reported. I wasn't sure that I wanted to know all that

and considered unsubscribing. But at the same time, seeing the chatter that

went on as if the members were old friends made me realize I had found a

group I could really relate to -- I wasn't so alone with my rare disease. I

realized that my husband and I both had to know what to expect in the future

and there would be no other way to learn except from people who had RP for a

long time.

During one period the list talked about how our spouses handled our

diagnosis. Reactions went from support and assistance -- being there -- to

denial and in one or two cases, rejection. It helped a lot to know that our

spouses were not the only ones whose reaction might be difficult to

understand. It was also great to have a place where we could even bring the

subject up.

We wrote about uncomfortable social situations. Some of the things that some

members had to go through helped me plan ahead for how I would handle it if

that ever happened to me. It makes you a lot less helpless when awkward

social circumstances arise.

I slowly learned that many of the people who have the worst problems were

also some of the oldest members -- they had had RP for 20 years or more and

were probably mis-diagnosed for up to 20 years before that.

Things have changed a lot in the last 10 years. New medicines that help RP

have been found and new methods for managing the disease have appeared. Some

of the research I read when first diagnosed indicated that the only thing

that could be done for RP patients 20 years ago was to try to keep them

comfortable with repeated surgery and that the disease was often eventually

fatal from respiratory failure. I found that while I was waiting for

diagnosis and it really scared me. But that particular information is badly

outdated and is not at all true any more -- most of us will have a normal or

longer life span. Some of us may have some RP-related disabilities.

My anxiety has slowly gone away as I have learned more and more from list

members. I now know about the things RP patients have to watch for and that

is really kind of comforting. There shouldn't be more big surprises like the

original diagnosis. Some members sent me friendly warnings about how their

own dizzy symptoms were mishandled when I said I was dizzy. In the long run

all of the information about symptoms and treatment (or lack of treatment!!),

as disconcerting as some of it might be, is equally helpful.

I know enough now about things like drug side effects, new medicines and

little problems that may and may not be symptoms that I can discuss them with

my doctor. She is willing to explain things in detail until I understand.

That is also comforting -- I feel sure that everthing that can be done is

being done because my doctor isn't keeping any secrets. I wouldn't know the

questions to ask her without the information I get from other list members.

H.