I watch all the news today and feel sad. I was always so involved in community service. I made countless speeches to promote (and succeed) changes.
Today I lie in bed, nursing my symptoms and feel useless and forgotten.
We took photos of me just a year or two prior to Lyme to show our LLMD. His mouth fell open. "My God you were beautiful!" Then he quickly added "And you still are" to be tactful.
I think some videos of my speeches are around here somewhere. I hope this year to be able to launch my web page. It will not be centered on Lyme but I will have a place to feature profiles of courageous Lyme patients.
ILADS needs to hire public relations experts to deliver our message for us. Signs and walks are great. But the campaign must be stepped up to a professional level. We need to effect major changes and soon. I hope my web page will help.
Any ideas you have will be welcome. I hope to be able to make at least some changes on this front. We hear about the President's call for Change. Now we must make our own call and make it happen!
Posted by lpkayak (Member # 5230) on :
i love your signature
actually i did some flashback thinking today...seeing the crowds...and knowing now i avoid crowds so much
i remember in the beginning all the support groups i went to...3 counties at one point because there was sucha need
and a little newsletter i did for a few years
and the protest at westchester
and the conferences
for sure i couldnt travel now or sit or stand or walk for long or be in crowds
i had the opposite happen by am llmd. he saw me-treated me (buhner) and about 3 years later i went back to him...and he couldn believe how good i looked...i forget his words except "you were a mess" - i think he mostly meant i couldnt communicate and was anxious...
i know ilads has its hands full trying to solve the problem...and educate docs...and bereally professional about research
i think when they find "the cure" the news will spread like wild fire with or wiithout public relations...if something is found that will make everyone better...you wont be able to keep that a secret...even the drug companies with all their money wont be able to stop it
Posted by farraday (Member # 21494) on :
Thanks for your helpful input! I, too, was "a mess". Am very slowly improving.
My LLMD is very well known and active with research. He hinted at work he is doing with stem cells.
I sadly agree that it will take a big newsworthy breakthrough to make a big difference in public awareness. But nevertheless I plan to fight on. My kids say they will help me launch my web page.we'll see if they come through.
My goal is to teach people how to tell their stories, how to make eye catching videos that show and tell "A Day In The Life Of .........." then I want to post them on my sites....sites that are NOT about Lyme disease.
I have been a published author, writing about lots of things from economic development to fun places to take kids. Writing is easy for me, especially now that I am getting better.
Posted by lpkayak (Member # 5230) on :
i wish you good luck with the writing and publishing...i know how good it feels to start to do something-no matter how small...that you hadnt been able to do
i rode horses my whole life-started at 3. couldnt ride for 10 yrs. then in 2007 began riding again. ive been off your a year or so now...but havent given up