LymeNet Flash: Know anything about Lyme? Anything at all?

This is topic Know anything about Lyme? Anything at all? in forum Medical Questions at LymeNet Flash.

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Posted by Tincup (Member # 5829) on :

Not only are we loosing Lyme doctors because of the restricted guidelines.. and medical boards rulings.. and normal things...

We are loosing support group leaders and folks who help others. Why? My guess is burn out.

I was just writing again to my legislators to TRY to get some help for folks with Lyme disease.

I wondered how I could impress on them to severity of the situation we all face... and how much we need their help and intervention. Then I came up with an idea.

"Welcome to My World"

Since November 1, 2006.. (8 days ago).. I have:

Received and/or responded to 955 Lyme related emails/posts. (I can't count the number of hours spent researching the answers and looking up information.)

Made/received 38-40 phone calls... from childrens education in schools.... to upcoming activism projects.... to support group assistance for other groups... to media articles... to LLMD's requests for research info.. to what steps to take to make folks feel better when they crash... etc... etc.. etc..

Written 20 plus letters for publication.. 2 newspaper articles.. and prepared and delivered 20 copies of the LDA petition to local stores and places of business.

Typed in over 200 signatures and personal info on the LDA petition site.

Spent election day at the polls getting signatures for the petition and doing a survey of over 100 people.. and hauling tables, books, brochures, etc back and forth.

Mailed out packets of information to groups and individuals.

And more.

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I also plan to send a few samples of what is going on.. in the patients words. Maybe I could even get THEM to start responding to the requests for help??? Anyhow...

I know other group leaders are also pushing as hard as they can go.. and they too are chronically ill.. and many have families to care for.. and/or jobs.

My guess is they could use some help. We are on a roll. We now have opportunities that we haven't had before... as desperation does open doors.

For the folks who are not able to go to hearing due to distance or their health...

Can you volunteer to assist your local groups with their ongoing projects? You don't have to live near them.. as much work can be done by email and phone.

I had a request from the higher ups this past week to find new folks to help because the old ones are too sick.. too overworked.. and unable to handle the load. Unfortunately, I've been too busy to look for help. Soooooooooooo.. now that I have your attention...

Can we try to work together .. so we can "get 'er done'?

Maybe then we can all sit on the beach.. sipping chocolate milkshakes.. and wondering..

Lyme? What's that?

[Big Grin]

There is a list of support groups on the Lymenet board.. upper left side. Can you go to the rescue? They are calling your name.

THANKS!

[Big Grin]

Posted by tothepoorhouse (Member # 8595) on :

Tincup, another idea is to share with them the map of lyme sufferers that has been posted here.

I couldn't log onto the site, so there are probably thousands of others who would wish to do so and can't.

If we could show visually how many people are suffering in almost every state, it could be a media education. Face it, viewers = ratings.

JMHO, but visuals sometimes have the most impact. Just a suggestion, as I realize you are one of our greatest advocates. [Smile]

Posted by Tincup (Member # 5829) on :

Hey ttph..

Haven't had time to check out the site.. but will do.

Thanks for the suggestion!

[Big Grin]

Posted by trueblue (Member # 7348) on :

^up^

There is no active support group listed for my state.

While I am pretty much useless as far as writing and making calls go I am capable of helping with mailings or distributing literature.

I realize that's not much. [Frown]

Is there a state out there that wants me? I'm game!

Posted by Tincup (Member # 5829) on :

Why not be a support group PERSON?

Add your info to the LymeNet Support Group list so folks can contact you if they need help?

Make up a name.. like Trueblue's Lyme Disease Support Group.

As long as you will take calls or email requests for help.. should be good.

Now.. email me and ask for a phone number. I have someone who needs your help.

[Big Grin]

Posted by trueblue (Member # 7348) on :

quote:
Originally posted by Tincup:
Why not be a support group PERSON?

Add your info to the LymeNet Support Group list so folks can contact you if they need help?

Make up a name.. like Trueblue's Lyme Disease Support Group.

As long as you will take calls or email requests for help.. should be good.

Now.. email me and ask for a phone number. I have someone who needs your help.

I have in the past but I'm not in a place where I can handle a group on my own. We tried to get something going here but seems to have fizzled.

I will email you, now. I'm not terribly confident about how much I can take on, at this point, but some... yeah. *takes deep breath*

email sent!

[ 11. November 2006, 01:27 AM: Message edited by: trueblue ]

Posted by bettyg (Member # 6147) on :

TC. WOW! I knew you were one busy LL broad, but I was overwhelmed how much you have done in the 8 days plus PRIOR! Around 1,000 emails! uffda

Yes, you all are overworked, and not enough participation from others with their MANY limitations too.

I do what I can here from the pc. I enjoy letterwriting so that's easy for me EXCEPT for the 200 word maximum limits!

It is rewarding sendng my newbie links/advise and get them off to an overwhelming start of read, read, read. I spend between 4-6 hrs. daily here on this board reading/helping out .

Many others could draft their kids/neighbors or some school kids to help in doing things like you did this past summer!

Also many senior citizen's groups want to keep busy doing things; reach out and call your local senior center, etc. asking if they have people to volunteer their services.

I don't like taking phone calls since I'm in bed at such WIERD times; nothing normal about my days; look at the time now! Got to be up at 730 am tomorrow for a diabetis symposium in town.

Whatever I can do from here, I'm happy to do so TC! providing my pc isn't freezing up like it's done this past 2 months! [group hug]

[ 13. November 2006, 02:20 AM: Message edited by: bettyg ]

Posted by lymemomtooo (Member # 5396) on :

To answer the question, "Know anything about Lyme, anything at all?"

Yes, I do..Lyme sucks and ruins many lives. It is a plague on society.

I do what I can daily to fight it.

Let's March somewhere!!!! lymemomtooo

Posted by lymiebean (Member # 10015) on :

To all you dearhearts, saintly folk,

Your efforts here on this site HAVE SAVED MY LIFE. Before I found you and this site, I'd decided to just let whatever had me, take me, I was so tired of the ridicule, the pain, the weirdness of this disease.

Now I am a newbie, and I am not beloved by computers, and like all of you, I am sick and out of comission sometimes.

Having said that, how can I help? I can write, call, research. I am a big alternative practices person, but I don't have many resources except this site. I have a small library,too.

lymiebean

Posted by Tincup (Member # 5829) on :

Hey Lymiebean..

Sorry it took a bit to get back to you.

If you are in CA.. they have a large group there that may need help?

May I suggest you check there first. If they don't need help right now.. I'd like to move THERE! HA!

Welcome to LymeNet! Glad to have you here!

[Big Grin]