posted
As I get stronger, I want to be able to give back to LymeNet and be a good community member. When I was very sick, it was hard to do more than just get by. I also want to know more about other people and their stories.
So, what are the ways that others contribute/participate?
I donated $ to the site (hrm. well not recently...) I'm trying to answer other people's posts, because I certainly appreciate all the answers I get when I post! I've joined a support group.
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I have a couple projects that I work on. I maintain one of the primary lists on the internet, I've written documents perpetuating the science supporting persistent infection. I've shared my knowledge at length here (thought not so much lately), and of course I've donated money and worked one on one as an advocate with patients who needed help.
I've tried to help anyone that I could. I've worked hardest on helping my self. If I don't get well then I'm in no position to give what I don't have.
The best thing to do is to work with your strengths. For some that's charity work, advocacy, writing posts, or organizing. Some write books, some donate money.
No one has to do anything though. Fighting their own fight can be more than overwhelming. Those of us with the energy to help do so because it gives our lives meaning and keeps us busy too, so that our suffering isn't constantly on our minds.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Backintherain, I think making it a point to be a healthy presence here is very important to the morale of people still in the fight. I think you are doing a lot.
Also important is to LIVE your life again so you can tell people here about it, that also gives them strength to fight the battle.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Helping newbies here is my main mission (on Lymenet, anyway) .. We could use help with that.
Then I add my comments on things I know a little bit about. I'm not much of an "expert" on anything, but as Six says, being a healthy presence goes a long way here.
PS... Good reminder on donating here! We need to all do that between now and Christmas. It's our gift to Lymenet!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My husband and I, both Lyme sufferers, started a local support group. We were not well enough to manage that for long unfortunately.
I printed up lots of materials at www.vistaprint.com for a reasonable price and distributed them all over the local area; doctors offices, hospitals, grocery stores, wherever I went. When I became pretty much homebound I didn't do so much of that anymore.
I set up tables at local events with my materials; school events, community events, etc. I would answer questions and try to raise awareness.
I printed up tshirts for my family and friends to wear and spread awareness. At www.vistaprint.com I was able to get them for $5 each, so I could make quite a few. I also had car magnets made up and gave them out to friends to put on their cars.
We bought at least 20 copies of "Cure Unknown" and distributed them to physicians, friends, family, and fellow Lymies who could not afford the book. We mailed a couple copies to Lymenet members who had posted they really wanted the book but couldn't afford it when it first came out.
We also invited Lymies over and showed "Under Our Skin" to them.
We hosted a "LymeFest" weekend and had some other Lymies come for the weekend, hosted them at our house.
We have hosted many other Lyme patients here when they have traveled for treatment in our area, or to attend Dr. J hearings, or conferences. Most connections were made right here on Lymenet.
I have written several articles and had them published in local newspapers. At one point I was doing this monthly.
I have also written poetry and one of my poems is featured in a Lyme project that travels to different events.
We provide telephone and in person support to local Lymies. My husband does most of this. Many people would call as a result of my articles, then more from word of mouth. He has driven people to doctor's appts, gone to their homes, brought them to our home, talked to them for hours on the phone, advocated for them, etc.
We donate money to patient funds, organizations, fundraisers, etc.
We remain active on several Lyme forums and in Lyme communities and try to post and help others, however we also gain support ourselves.
And, above all else, my husband and I (with a few other Lymies, all from Lymenet) created a website called www.lymefriends.org, which we consider to be an offshoot of Lymenet.
It is a nice complement to Lymenet. It is a social networking site with different features. I spend most of my time on Lyme Friends, Lyme Net, and the Facebook Lyme Community.
Both my husband and I have become too sick to do many of the things we did a couple of years ago. So now much of our time is devoted to LymeFriends. We spend several hours each week working on the site, welcoming new members, updating things, posting information, etc.
That is now our main contribution to the Lyme community. We have close to 2,000 members. Our moderators are all Lymenet members (some are/were mods here too.) It's a lot of work but it's a joint effort with the moderators and the members. And I can do it all from bed.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Oh yeah, Green Santa, too. In the past when finances were better, we would sponsor several families, through the program here and more informally by knowing people on here who were in need and sending them boxfuls of gifts directly.
I think people who work so tirelessly on here helping newbies are saints. I find it difficult to have to repeat the same things over and over again because I have really bad ADHD. I see people like Keebler, Lymetoo, and SO MANY OTHERS whom I've watched for YEARS patiently and thoroughly guiding newbies along, and my heart is just overwhelmed with gratitude for them each and every time I read their posts.
Honestly, I know that is one role I could never fill. I can post here and there, and respond, but I could never answer newbies over and over for years, same questions like they all do. I am in awe of all the people who do that.
My attention span short circuits after a couple posts.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I, too, am amazed by the people who tirelessly answer questions and offer encouragement here. They're great!
There have been times when I spent every waking hour on LymeNet, scared, asking for help, and trying to learn as much as I could. But those times were followed by periods when I had to avoid LymeNet -- just take a break and think of something besides being sick. I have to be careful not to let illness become my identity.
Anyway, I'm impressed with the range of ideas and things that people are doing. What I think is really great is that there are ways to do something even for the bed-ridden. And what is right for one person may not be right for another - depending on personality and degree of illness, etc.
And I completely agree that you have to take good care of yourself first -- It's a really important lesson. If I don't make a point of taking care of myself - getting enough sleep, eating right, thinking positive, taking breaks - then eventually, it'll catch up with me and I'll be in no condition to help anyone else.
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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posted
I am also in awe at those who continue to post up all the links and information to those that keep coming. And coming. And coming. (but Lyme is rare, right? *sarcasm*)
I am so grateful to those that do. It's actually VERY comforting to know that if there's a question, you can COUNT on some posters to be there with what information they have.
I keep saying "when I get better"...
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
I see you're in N CA - I do support/advocacy educational work here, to help get the word out. I'll pm you.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Glad to hear you want to give back, back. Many ways to do this.
Wow, tracy, I am impressed. We should clone you and your husband. You are real role models.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Maybe I'll write a little more, just to give folks some ideas.
If you have bulletin boards in town, you can post info slips with websites listed. This includes all general ones, plus relevant stores.
If you have contacts involving any particular age group, activity, organization, etc, you can alert them to the issue and provide info, discussion, etc.
Listen to people and see what they're interested in knowing about. Interest in tick repellent is generally high.
It's really helpful to be able to hand folks a brochure along with some typed-up local info.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I saw you on Lyme Friends, Lymetoo! Glad you got back on! The tabs at the top of the page will pretty much navigate you through. It looks overwhelming at first, but is user friendly. Oh and be sure and post your business stuff in Classifed, too. It's a group. I think you posted in it before.
One of the most helpful things I have done that reaches a ton of people is to have an article published in a local paper. I don't know about most people, but we have these small local publications that you can just send things in and they will gladly publish them. Those have reached a LOT of people. I need to get back to that. So much to keep up with, even from bed. We had it down pat where I'd write the article then Blake would take care of everyone who called afterward!
Also, the Lyme community on Facebook has EXPLODED. It's huge, and newbies land there daily. I've just started to try and keep our Lyme Friends Facebook page updated, mainly with inspirational type daily posts. They reach a lot of people through the newsfeed, and a little food for the soul always helps.
There are some other really great FB pages/groups on Lyme, too. Just posting here, helping others, and posting in places like that reach a lot of people.
But reaching out with articles was so powerful because the word got out to a lot of people who had Lyme and needed help, and didn't know where to turn.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Robin I'm glad you shared more. I think the nuts and bolts of doing things like that are really helpful. They aren't hard things to do, the key is following through and doing something.
This year, at our town's Easter egg hunt, I worked with another local Lymie to set up a table loaded with information. Ugh, the kids all ran off into the woods to get the eggs!!! One picked a tick off their child and I taped it to our poster.
It's so easy to contact people in town and set up a table at school functions, church functions, town functions....if you have a printer and some colorful paper, you're good to go! There are brochures and everything you need online all ready to print out.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thanks Tracy. I knew I was missing something! I couldn't find the place to post about my business. Thanks for the info on that!
---editing to add: Tracy .. can't find the classified section
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Did you find it, Lymetoo? It's a group, not a section. It's just one of the groups; it's called Classified and it's the place where members can peddle their wares.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
By raising awareness. At the next opportunity, I plan to set up a booth/table with information on erythema migrans rash, prevention, symptoms and contacts. I can not offer medical advice, but I can share my story and what I did to get better.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
There are a lot of good ideas on this thread; I look forward to doing some new things. What I currently do is to participate on two Lyme forums, and I am a contact person for people who see my chiropractor when he suspects Lyme or if they've just been diagnosed. My local Lyme friends and I are drafting a letter to send to physicians regarding Lyme in the area.
I am wondering if those of you in N. CA are affiliated with any support group. I'm thinking of attending one this month for the first time. New experience for me.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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posted
Tracy, I have seen all that you've done. I am amazed because I know you have illness amongst your family members, including yourself.
I don't know how you do it, but thanks so much for all your contributions in so many capacities.
You say you have really bad ADHD. God bless, maybe that helps you do what you do. You definitely have a gift.I could never do what you do (at least in the foreseeable future)
Nor could I do what Keebler and Lymetoo do. My heart too is overwhelmed by what they post, over and over again, to help newbies.
And the Green Santas: our financial situation used to be much better. But still we are better off than so many others. It would be a good idea to get this off and running now.
Thanks for the inspiration.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
THANKS FOR ALL OF YOU AND YOUR EFFORTS!!!!!!!!!!!
Myself, I am always being a 'taker' and forget the giver part.
I am the dude that sucks all the air out of the room,,,and forgets to open the window!!!!
The good Lord was handing out brains and I thought he said trains,,,and didnt take one!!!!
Thank goodness all of you take up MY slack!!!!cuz IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Alana Suzanne, Thank you so much for your kind words. That is so sweet! I hate to be living the way I am right now, in bed; but I'm confident it won't be forever.
Don, don't be silly; you've given plenty! Friendship, comraderie, love...you've made a lot of people smile and feel better! And LAUGH!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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