Hi

August 28, 2001

Hi Angie,

My name is Kathi and I acutally signed up yesterday under the e-mail address

of baseball@... and then had 145 messages this morning from various

messages from the Polychondritis group, so thought I had better start over

with a seperate account from my family. I am not the most computer literate

person in the world, but I am learning.

I guess I will start by telling you that I was unofficially diagnosed with

RP in April and then officially diagnosed in June when I made a trip to

Boston to see Dr. Trentham. I have been battling the symptoms now for 3.5

years and went from Dr. to Dr. with no luck. I spent 100's of hours on the

internet researching various disorders and came across RP and contacted Dr.

Trentham via e-mail at that time. I am fortunate that I am a Registered

Nurse and had the medical background to keep researching. The symptom that

I began with and continue to have to this day is persistent hoarseness. I

had that for a year before I began having other problems and then it was

like everything came crashing down around me. I started having daily low

grade fevers that would at times go to 102-103 degrees. Joint pain and

swelling, specifically in my hands and feet, SEVERE nausea, a resting heart

rate of no less than 120, rash on my neck and upper chest and fatigue that

became almost devastating. In December and January of last year I had my

first 2 episodes of ear pain/swelling. In February of this year, I woke up

one morning with no vision in my right eye for about 10 minutes and was

diagnosed with Uveitis. It was about 6 weeks after the eye problems that I

found the RP on the internet. I am now being treated with methotrexate and

prednisone and use drops for my eyes. I have had many improvements but

continue to battle the hoarseness and the fatigue is becoming overwhelming

again (it had shown improvement weeks 3-6 of methotrexate). In the last

several days, I have also started to have eye problems again.

I am desperate to talk to people with this disorder. In the last 2 weeks I

have had to go from working full time to working part time. If I don't show

significant improvement by my next MD appt. (with my local physician) which

is in October she is going to recommend that I quit working all together. I

am having great difficulty accepting all of this. I am a type-A

work-a-holic personality who feels her world crashing down around her.

On a personal note, I have been married for 21 years. I have 3 children

ages 20,19 and 14. I am very fortunate that my husband and children are as

supportive as they know how to be. Right now, it is very difficult for me

to even tell them how to support me because I am not sure what it is I need.

I also have a strong group of friends who are supportive. The local

physician that I am using is a Rhuematologist who has been like an Angel

sent from heaven to me. I talked with Dr. Trentham yesterday and he is very

pleased with the way she is handling this. She has been very kind and

supportive also.

As you can tell, right now I am feeling pretty lost and desperate. I think

that simply conversing with other people who are experiencing this will be

so helpful. I would appreciate any advice you can give me or any contacts

you can set me up with. Just remember, I am still learning how to use the

computer!!

Thank you so much,

Kathi

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August 28, 2001