Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ok.. so you may not be able to drop everything and run across the county to attend a hearing or a Lyme patients rights rally at the drop of a hat.
But...
Can you stuff an envelope and figure out how to put a stamp on it? How about make a phone call? Write an email?
If so... we could use your help!
WHAT? No time you say?
How about one of those nights when you can't sleep? Or one of those days while you are in bed wishing the herx would go away?
Or how about this idea... put the kids to work on a rainy day when there isn't anything on the tv! Or maybe you can find time while sitting there watching your kids play another ball game, or while at their dance rehersal... or whatever kids do these days?
There hasn't been ONE single volunteer I know of that hasn't been overwhelmed with the VOLUNTEER work of helping patients who are sick.. and/or helping with education efforts, medical research, political stuff, rallies, etc.
Some are so busy they are thinking of giving it up so they can focus on their own health and families. Keep in mind.. the folks who have been helping others for years are also sick... and many are limited on time, energy and money too.
We need some fresh ideas.. a tiny bit of your energy... and a helping hand.. or even a kind word now and again!
Can you do bit of research for a state or locality.. or for a person needing data, facts or figures?
OR... How about open a lemonaid stand to raise money for a good cause? Or .. duh me... obviously think of better ideas than that to raise funds.
Can you compose a letter? Compile data? Count from 1-10? Write a thank you note?
Let your local support group know you are there for them to call on. Offer to help them to do programs... and do them! Whatever YOU feel you can do would be a huge help to those who are struggling to keep their heads above water as more and more get sick and need help.
It would be oh so very nice.. and it's the right thing to do. We need to stick together and help each other to be able to move forward.
There is a link here at LymeNet that has info on local support groups. See it there... on the top left side of the screen.
Go for it! You will be glad you did something to help!
And I thank you!
PS... I don't want to lose any of the groups or individuals who have been, for years, helping others with Lyme just because they are hurting and need more helping hands to do what needs to be done.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Tin, I can handle stuffing envelopes, addressing and stamping. (Writing and calling are too far above me.) I can also count on most days; just don't ask me right from left.
I'd love to do some menial tasks but there is no local support group and my state one is 5 hours away and unresponsive.
If anybody wants me, I'm yours!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I can help on a limited basis. My hands are pretty full right now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
It's not just the time, it's having the cognitive abilities to make sense, the energy to be able to do more than basic ADL's, trying to pace my days so I can get the shopping done and try to keep the bills paid.
Being single and ill, with a dying parent and a an adult child with mental health issues makes life like a merry-go-round to start with. I know I'm not alone here.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey True...
Check this post out. You don't have to have a "group" literally.... you can be your own group! If you are supporting Lyme folks with assistance.. you are a Lyme volunteer.
When you see a need in your community... jump on in as you are able!
Good for you! Unfortunately I have a feeling you will need and want to be spending a good amount of time soon on activism in your area.. so rest up now... and be prepared.
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Lymednva...
Well, you got me! HA! Talk about lack of cognitive ability.. I can't even figure out the initials you just used.. "basic ADL's"??? Hmmmmmm??? After 2 AM my brain turns to grits!
And yes.. I do understand folks have other things to do.. and you are right.. you are not alone when feeling overwhelmed. I am in the same boat with you, as I have many responsibilities too... as do others who have been volunteering.
Helping folks with Lyme can be very energy consuming, time consuming and can totally disrupt a families life .... just ask mine and I am sure they will give you an ear full! HA!
But not to worry... if and when you are able to lend a hand... there will be plenty left to do!
By the way.. have you considered getting a book keeper to assist you with the bill paying? I lost all those abilities years ago... and finally admitted I needed help. Luckily I found someone who helps me every month. Just the removal of the stress it caused me made it worth seeking out assistance and help!
I am hoping your life smooths out for you soon and you feel better.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Tincup: Hey True...
Check this post out. You don't have to have a "group" literally.... you can be your own group! If you are supporting Lyme folks with assistance.. you are a Lyme volunteer.
When you see a need in your community... jump on in as you are able!
TC, I am trying to help,, where I can in other ways, but I don't even understand that post.
Being my own group isn't working out so well for me. It doesn't matter maybe nothing matters.
Sorry
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
Lymednva,
What has really helped my hubby/me is AUTOMATIC PAYMENT deductions for monthly utility bills taken automatically from our checking acct. on the day it is due! No postage; always paid on time ... just to make sure the funds are there & the bank balance is current.
Tincup, I do enjoy writing letters. I sent my email off to Steven Spielberg today thru my personal contact for the following funding considerations:
1. Dr. Jones legal fund; how it helps kids .. getting him back to the office to treat them daily. I provided links from the defendthedoctor.com of case overview & link showing his photo.
2. Helping to fund UNDER OUR SKIN lyme documentary film on getting it finished and released to the public. The people putting this together said they had NOT contacted him; that they were sure he didn't contribute to documentaries, but was greatful for any help $$ for their cause. Gave a link, email, phone no. & regular address.
3. Last report Pat smith gave me was $200,000 to OPEN THE DOORS to our new CHRONIC LYME RESEARCH CENTER At columbia Univ., NYC, and some links on that.
Asked if he would consider funding any of the above.
My contact may be fishing 2 wks...sometime this month. Whenever I hear anything back if he got it to another DIRECT link to Steven; I'll post; you betcha'! Bettyg
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I don't know what else I can do right now, 2 support groups, 2 lyme web sites, promoting my lyme book, talking to my legislators about cosponsoring HR3427 and S1479....I'm swamped
But I still take calls and emails, follow the support boards, talk to everyone 'bout lyme. I've racked up more postage than I have in monthly bills. I write whoever whenever, and I'm not afraid of doing so.
I can do whatever anyone needs to do. No I don't really have time, I MAKE time. We all must do that.
Just don't ask me to count backwards by sevens before 10 a.m. in the morning, and I hope you don't mind if I put the stamps on upside down because I can't see very well sometimes....
I'm a slave to the lyme cause...cause I'm a slave to lyme
Just call me if you need me. Wisconsin can use some helpers over here!!
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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posted
Hi, Basic ADL'S mean's Basic "activies of daily living."
Kellyann
Posts: 8 | From usa | Registered: Feb 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There are ways to use the internet to help get information and materials out to volunteers. John McCain's presidential campaign had a system where volunteers would get lists emailed or downloaded for phone calls. MoveOn.org does incredible volunteer mobilizing online.
I'd suggest trying to reach out to some of these groups if there is a real interest in starting and online activist community. If somebody wants, I have an ex-professor who has a contact to McCain's web person. PM me and I can try to get the contact.
I'm at a breaking point in my own life, with Lyme, school and work. I really want to give my time to Lyme activism, but I just can't right now. So wish me luck as I start applying for new jobs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
what's this doing way down at bottom of screen 1; up we go....
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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obviously think of better ideas than that to raise funds. 
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