Topic: An easy way to help yourself and other lymies too
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
2-23-09
Dear Lyme Friends,
I am writing on an extremely important matter today. I have stopped trying to do much activism in a formal way because I am so disabled physically (especially hands-ie: typing) and cognitively at this time.
You will see many mistakes in this letter, I am sure. Please try to ignore them, and see the message I am trying to express.
Mimi from NatCap Lyme called this morning. She asked for my, well, OUR help, but really she is offering to help US.
They are a group that has been offering education and support and review of public policies concerning these diseases to those suffering from Lyme and tick-borne diseases since 2001. You can go to their site here: www.natcaplyme.org
They are located in Washington D.C. and Virginia and are active in educating Congress and hopefully getting Legislation passed that will help and protect us, the ones still sick and struggling to hang on until treatment that will cure comes along.
If you go to the site you will see this:
Major Summit on Tap for Lyme Organizations LEADERS URGE UNITY - STRENGTH IN NUMBERS.
Washington, D.C., February 6, 2009. Leaders from top Lyme disease organizations across the country plan to assemble on March 28, 2009, at George Mason University near the nation's capital to hold an open discussion of their views and build unity in the Lyme community.
Lyme disease is one of the most misunderstood and controversial diseases in U.S. history, and cases are dramatically increasing many thousands each year. Lyme victims are seeking long overdue CHANGE--in testing and treatment that will improve their lives and research to cure this debilitating disease
Lyme leaders and advocates plan a one-day forum to discuss their views and consider the need for Congressional action to accomplish goals that will serve Lyme and tick-borne disease victims.
(there's more if you go to the site)
When I told Mimi I could not travel now, she stressed they really wanted to hear from people like me (and many of you) who cannot travel. She said we are the one's it is important to hear from. They want to know our needs and what we are struggling with so they know how to word the legislation. Think about it, brainstorm, come up with a wish list: what would make your Lyme journey easier now?
-access to llmd's? -educating your primary's on how to treat or how to work with your llmd? -access to meds? supps? IV supplies? -a cure???? -household help? -ssdi? Help getting approved? -worker's comp if you got bit on the job? Help getting approved? -appropriate treatment for Veterans?
Mimi has asked for input. If you go to www.natcaplyme.org there is a place to make suggestions. If it is easier, you can e-mail me at [email protected] and I will consolidate your suggestions and send the list to her.
Please write ``NatCapLyme suggestions'' in the subject line and when possible give me a list rather than paragraphs. I will get your suggestions and concerns to someone who cares and will try to help us deal with this.
We are fortunate that this group has formed to give us a voice. How many times have you been told ``it's all in your head'' or been offered psyc drugs or gotten that look from a loved one? Now is our chance to be heard instead of dismissed.
Please contact them through www.natcaplyme.org or email me and I will send your concerns. Thank You.
PS-Please feel free to share and spread this info around in any way.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
laurie,
thanks for posting this, and i saw no errors and I WAS NOT LOOKING!! i'm a former professional secretary but i no longer capitalize unless it's a FORMER thing ... it hurts my carpal tunnel wrists/hands. so we each do what we do.
i will copy this and share with other folks on my LYME GROUP LIST so we can get out the word!!
i too wished i lived closer to this event and could do, but i don't! i don't travel well and when you factor in my extreme sensitivities:
LIGHTS/GLARE/REFLECTION; NOISE/SOUNDS; AND CHEMICALS: perfume, hairspray, after shave, diesel fumes, some foods, cigarettes and SMOKE ON THEIR CLOTHING .... uffda PU!
i'll be happy to share my opinions with them. thanks for giving us the opportunity to do so!! *********************************************
posted
If I could get help with getting there, I would go. Physically, I can still go. Finacially, I can not, but I think we need FACES there as well as back up for all the people who can not get there!!
Regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
well-they are very aware of those of us who can't go whether it is because of money or health. they REALLY want to reach the ones who can't go go that is why they are reaching out so personally to us.
she called me back to make sure evryting was ok. they care and want to help.so please send me or them your input---it will be just as important as faces.
when it is a hearing or protest or something faces matter...here our input will count.
maybe when a legislative thing comes up and it is impt to be there some of us will be better. i think it is mostly for group leaders too...
also-i did put a post on medical asking others to come here-but it would be good for you guys to keep that post on front page-thanks
i killed my hands yewsterday so probably won't type much for a week or so
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
i emailed it to my list lyme group!
IP: Logged |
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