Re: RE: Lunch with Louise, , , Barbara, Also important news re: Still's Research

[Guest guest]

Dear , I sure we will be able to get together again soon. Just was glad that

you were able to visit with us on your lunch break. Did feel guilty though with

us all taking a leisurely lunch, and you had to leave to go back to work. But

that is a good thing thou, it would be nice to still be able to go to work each

day. Yes, I thought it was wonderful news about the funding for research being

increased. It was too good to keep the information to myself. I never hear

anything about it, so thought I would give some hope to others, that maybe there

is some progress in the works. Keep in touch and take care. Mandy

in Houston wrote: Hi Mandy.

It was also a pleasure meeting you. I just wish I could have stayed longer. We

will have to get together again sometime.

That is incredible news from your friends that are in Congress. WOW! To think

that one day, we might know WHY we all have this crazy SD is exciting.

Have a blessed day.

XO

" mandyblue@... " wrote:

" mandyblue@... " wrote:

" mandyblue@... " wrote: Dear Louise, I

hope this note finds you well and settled back home. I really enjoyed meeting

you. Thank you for taking the time out of your family holiday to get together

with all of us. I wish the others could have attended, but certainly understand

why they could not with family visiting from out of town. You must really miss

your grandchildren and your precious new grandson. Maybe you can post us a

picture of them sometime. It was so nice to meet with others who unfortunately

share this disease. I would have loved to have met all of you under different

circumstances. But at least meeting with these very nice ladies was really

beneficial for me. That was the very first time that I have ever met anyone,

since I was diagnosed 10-12 years ago, that has what I have. I hope the others

will keep in touch. I enjoyed meeting everyone of you. If your husband wanted to

come, I wish you had brought him. Well enjoy your beautiful

Colorado. Think about us when it gets so hot in the summertime in Houston. I can

hardly stand the heat here in the summer. It seems like everywhere I have ever

lived has been hot. Summer year-round in the Pacific Islands, and unbelievable

heat in the Middle East. Maybe that is why my family always spent the holidays

in the mountains. But that has changed since my father died. I love to see the

snow. I know people tell me that it is not so great when it all starts melting

and gets messy. I don't think I would mind so much. The cold weather actually

feels better to me. Maybe because this disease affects me so systemically.

Especially with the autonomic disorder that causes the extreme head sweating.

The heat makes it worse. Thank you again for picking me up to take me to lunch.

I really do appreciate that you took the time to meet. Take care of yourself and

your husband. Next time you will have to bring him with you. Bye for now. Keep

in touch. To , Barbara, and , It was a

pleasure to meet with all of you over lunch. I enjoyed making friends with all

of you. I look forward to us getting together again. Hopefully Beth will be able

to join us. In my thoughts and prayers. Hope all of you have a very special New

Year. I also have some very good news to pass on to all who have this disease. I

have relatives in Congress, who spent the holidays with myself and my mother. We

were told that the allocation for Stills Disease Research has been doubled by

Congress. Hopefully they will put it to good use. To all in my thoughts and

prayers. Mandy