Topic: what HAVE you done to support other lymies??
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
ok, i'm not into bragging here but after reading a couple of posts and people saying we are so negative or rather the post is, here's a novel approach.
i want to know what you have done to support other lymies. did you take them shopping, buy groceries, clean their house, mow the yard, etc?
i realize we're scattered all over this planet, but surely some of you must live close enough to a group or another lymie to help them out.
so let's all hear from people who have had something done for them or maybe you did something that made somebody feel good.
can't hurt, rght???
i had a guy at the vitamin shoppe GIVE me candigone when i told him i had lyme. it costs about 20 bucks, and he just said, look, i'm the manager, you've got enough problems, try this...
he was great!!! i was floored........
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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stymielymie
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Member # 10044
posted
WELL I'LL START i have set up the monthly chocolate fund for stressed lymies each month a different lymie gets a box of chocolate from moi.
i also was head elf this year and help collect money and gifts and gift cards for kids and lymies in need . i was able to build a computer and send it to kam to replace her old one with a brand new on.
and the list goes on.
later docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Here's MY LYME LIFE
I...
* attempt to facilitate the SC support group monthly and have for the past 8 years since I founded it.
* 've arranged Lyme events like lectures from visiting doctors
* have written a few newspaper articles re Lyme and had them published in our local family paper
* have arranged marching in our parade on 4th of July with signs and boothing in the park afterward- WATCH OUT- FOR TICKS! THEY WILL MAKE_ YOU SICK! (Judith did the chants though, I suck at chants!)
* and signed us up with the $help of CALDA to do the County fair again and coordinate it because we reach thousands of people that way- last time we did the fair was a few years ago- we booth it with 2 people for 10 days- from 10 am to 10 at night!! and midnight a few nights!!! I organize it- people, things, brochures, and hand out brochures, answer questions and teach passersby the ONE correct way to remove a tick!
*Have written my own local region Lyme brochure relevant to our area and pay to have it photocopied every month and I put in in our local libraries as many as I can hit.
* have a hot line for Lyme on my home number and am listed in multiple places on the internet and in a Lyme book and take calls any time day or night and call people back if they can't afford it if I can afford it then.
* drive anyone to any doctor who asks me including one patient every month 2 hours away for 4+ years but many local as well.
* have anyone doing really bad on my hit list for tea, hikes, annoying "how are you?" emails because I worry about them.
* accompany Lymies to their regular doctors or to problem doctors if they need someone as an advocate, either to stand or sit there silently or to speak up, whatever they need.
* web The Lyme Disease Memorial page and have for 8 years now. I interview families if need be and make sure the deaths are appropriate for the page. I used to web The ALS/Lyme page and co-moderate The ALS/Lyme group when it was big-
* write letters almost every day to newspaper thanking them for Lyme articles or chiding them for incorrect coverage.
* read Pubmed every morning, all the new TBD abstracts, and if I see somethign relevant to another researcher I write the researcher and connect them to the research. I do tihs infrequently but it is a great hobby of mine, it is exciting and I will track down snailmail if need be to do it. I have corresponded with quite a few Lyme docs and researchers and love Lyme research. This is selfish, fun and Lyme related, too.
* try and answer newbie questions on Lymenet every morning before my little girls wake up. When they wake up though my free time for the day is gone. Unless like today the little one is napping and the larger one is busy and then I sneak back on-
* have reserved the Aptos library DISPLAY case as of FOUR YEARS ago (long waiting list!!) and in TWO months we get it!! I can't WAIT!@
* flew back East 3 times for Lyme events, for Doc Bs rally, for the first Lyme disease TOFU thing, for the thing with Monica at Lobby Day-
* wear silly CALDA shirts (I love 'em*)! but NOT every day!!!!
* have a LYME DiSEASE bumpersticker on my car and on my MAILBOX!!!!!!!!!!!!!!! (Fear me oh neighbors fear me*)!*)*!)!
* wrote a 300+ page Lyme disease thriller for the express purpose of spreading the message and ALMOST got it placed for publication... (sigh!!!)
* met with the drafter of the CA Lyme legislation when it was hush-hush and gave input!!
* have met yearly with local politicians to stay in touch and fill them in on the politics of Lyme should things ever get dicey here and was able to help get Anna Eshoo involved when Igenex was being attacked a few years ago. Two of our local Lymies were close personal friends of hers (I kept that a secret!!! They were my power people- bless them!!!!) and we had ALREADY filled her in before on how Igenex was getting unfairly targeted- so when they DID go after Igenex she knew all about it and stepped in gladly to the fray- (but due to Internet rumors I got in trouble with people for supposedly not helping while it was ironic I HAD helped so much- but I was so ****ed off I never even corrected people at the time- I just withdrew from Lyme CA politics)
So those are things from the past-
For the future-
*My BIG LYME Dream was to make a documentary with Glenn Killions Mom about him. But she died (she was *awesome*) and I don't think we could do it without her!!
* Now My Little Lyme Dream is to get a grant to get copies of my Lyme brochure made for every person in SC and have the $ to have them delivered in their mailboxes!!!!!!!!!!!!!!!!!!!!!!!!!! I am going to apply to a few grant places for it!!!
* And my Other Lyme Dream is to get my Lyme thriller published but I am terrible at sending it out because it has a selfishness in it- so I don't- because I have a guiltiness for doing anything for myself- it's terrible- low self-esteem I know- but I DID have an agent who loved it and it WAS read by a top editor at DoubleDay (and REFUSED!my heart!) but it feels selfish, too, not pure so I think that is why I don't pursue it- or should I say- the illusion of purity-
* I keep thinking we can turn the tide if we can get ONE special interest group to turn- like the gay community- or Equestrians in General- or Restauranteurs of America- SOMETHING- some group that will make a tipping point- some group that will spread The Truth*)! So I often brood on WHAT THIS COULD BE!!!!!!!!!!!!!!!!!!!
See, I get rabid when it comes to Lyme...
Lyme is, for me, The Cause*)*)!
A Lymie through & through, Sarah
p.s. BUT I don't take IN stray homeless Lymies- I have BOUNDARIES today!!! I used to take in homeless runaways and throwaways, kids and then just plain homeless people in days of yesteryear but when my older daughter was 5 there were a couple of incidents which showed me that was unwise to do while I have young children anyway. Luckily she survived unscathed- my daughter I mean- I took her to a therapist and had her reviewed and she was fine. (This one homeless pregnant woman stole not one but ALL THREE of MY FAVORITE SWEATERS including the one which my Grandma had knit for my father(no my daughter didn't even notice that)!!!! AND this one woman who was a homeless Christian fanatic lived with us for almost a month while I found her housing and she kept telling me over & over again I was going to go STRAIGHT TO HELL (because she was deranged)!!! (Eating my single Mom food, sleeping on my single Mom couch, and my thanks- "You're going STRAIGHT TO HELL!" AGH!!! AGH!! it was a nightmare but I couldn't kick her out on the streets it was raining and she was 68 years old!!!!!!!!!!!! My daughter kept asking, "But WHY are you going to hell, Mama?" it was SO SAD!!! But I found her housing and the woman moved on thank goodness- but she tried my patience!!! Whew!!! People, especially mentally ill homeless people, are so INTERESTING*)!*))!! So NO HOMELESS LYMIES!!Sorry!!!!!!!!!!!!!!!!!!!!! I am OVER that. That is my boundary*)!*)!! UNLESS it is just for a night and I know you- or you're in serious trouble and I know you- or you're just VISITING-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
WOW, SARAH! i really enjoyed reading about all you do; some i knew; majority of this i didn't!
it's going to be hard to follow your extra-ordinary outstanding volunteerism, but i'll just contribute in my limited ways:
1. lymenet ... sending all new members my newbie package of 60 pages now of links, advise, symptoms, tests, disability, etc. which includes treepatrol's newbie archive links! I spend many hours here daily with the lymenet answers I gave here/below!
2. lymenet .. sending folks LLMD info they request or steering (PUN intended) them in the right direction for the info.
3. lymenet .. answering many PMs daily when newbies are too bashful to post publicly.
4. lymenet ... answering questions and sharing my knowledge on all the boards except off topic.
Forwarding LYME INFO to my home private LYME GROUP LIST .
5. having had my JUNE 07 month-long lyme disease window display and card table full of handouts at our Ames public library.
6. set up 3 times so far my 8' table for an educational lyme display this year and given out my lyme brochures and other freebie things. Did this last year, but more this year even after my hip replacement surgery.
fyi, Last weekend, I was set up at Radcliffe days, and had 6-9 kids ages 8-13 come up to my table right away asking about lyme and staying 15 minutes to learn and asking QUESTION over & over. Then my 1st customer that day told me, "I'm so glad you came her today to teach me/others all about lyme disease! Can't you stay until 7 pm tonight"? as I packed up to leave. That made my day.
7. writing my federal senators/house rep at least monthly if not more often about LYME BILLS IN CONGRESS.
8. wrting monthly to my state senators/house rep about lyme things and getting them info.
9. PUBLIC HEALTH ALERT newpapers ... I've delivered them twice now to this group of folks:
my local clinic: my PCP, blood lab, GI, neurologist, skin dr., rheumatologist, surgeons, and any other md who normally sees us!
hospital CEO/PRES, ER, blood lab
local red cross;
my current/former STATE GOVERNOR, our ATTORNEY GENERAL, OUR STATE HEALTH DEPT. DIRECTOR & INFECTIOUS DIRECTOR,
my senators/house reps in IOwa and WASHINGTON DC
recently, send all back issue copies to our iowa senator who heads HEALTH FINANCE bills this year, and he was really looking forward to reading them.
referred him also to YANKEE MAGAZINE web site and wrote the web links on ALL my PHA newsletters to iowa/dc senators/house reps.
10. writing letters to newspapers thanking them also for writing about lyme
11. writing REBUTTAL letters to newspapers who DIDN'T WRITE THE TRUTH!
12. in process of writing a millionaire about helping to finance the UNDER OUR SKIN DOCUMENTARY so it can be finished and be shown around USA/elsewhere to us LYME patients/families, and public.
13. writing about trying to get FULL-TIME CHRONIC LYME LITERATE MDS IN IOWA; we have NONE!
14. Upon my natural death and my husbands, I've willed a certain amount of money for 3 different LYME issues:
a. CHRONIC LYME RESEARCH CENTER, COLUMBIA UNIVERSITY, NYC;
b. LDA's education fund;
c. LDA for an ADULT FUND FOR TREATMENT named after me, for those to get appts. with LLMDS for treatment.
This is provided we don't have to go to nursing homes for an EXTENDED time using up all the money we frugally saved during our 33 yrs. of marriage!
15. receive phone calls from others wanting lyme info.
at the moment, this is what i can think of what i do...
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Wow!! I had no idea re you either BettyG!!
I should do that with my will too if something should happen to my kids- don't like thinking about it but if we all died in a car crash I would rather Columbia LDRC get my estate than anyone else- or the Doc J legal defense fund!! Or the Lyme kids fund!!! Seriously- thank you-
Your #5 is my biggie coming up- the library display case- I think that makes a HUGE impact because it is peripheral, not in-your-face but so integral to the community- I think these presentations that are matter-of-fact but firmly entrenched in the community matter more than others- I really do- I am really excited about it-
Happy Sunday all-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
NOTHING,,,I do NOTHING!!! remaining,, sadly,,,--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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For those of you who read this and feel you can't be an activist like this, there are still things you can do to help people like Sarah, Betty, Doc Dave, etc. A lot of unsung heroes in our midst and more are welcome. If you can't write a bunch of letters, write one. It gets easier after the first one. Make sure your facts are correct.
If you are getting better, let lymenetters know. The tendency is to only post when things are bad, and it is a bit depressing to only hear the downside. Yes, get support for the downtimes, but remember to post improvements too, so newbies are not frightened out of their wits.
Lyme is a self help disease, because we sure aren't getting much help from the medical or politcal establishment.
Not sure you are correct, Don, in saying you do nothing. I recall your making some helpful suggestions to people and chiming in on posts.
Posts: 8430 | From Not available | Registered: Oct 2000
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Geneal
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Member # 10375
posted
Don,
You and I both know better.
You help me tremendously. We both get to help another on this board too.
I hope to have a Lyme resume' half as impressive as California's and Betty's.
Doc Dave, how does one get on that chocolate list?
I have gotten on a local talk radio show to speak about Lyme.
I have put flyers at the local Quick Stop to educate people about Lyme.
Mostly though, I pray. I pray for everyone infected or affected by this disease.
I, for one, feel as if I owe my life and sanity to Lymenet and it's members.
I only hope one day to be able to give back as generously as I continue to receive daily.
My personal goal would be to set up some type of fund to help those with Lyme
Who are unable to afford medicines and supplements.
Maybe like a Secret Santa thing.
I'd have to be able to work to afford to do it, but
It helps to keep me focused on someone other than myself and my situation.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wow. This is a great post. Looking forward to being able to read more of it. Brain is still limited on how much I can take in at one time.
I thank Doc Dave daily almost for the CPU and keyboard. It is part of the survivor needs for me.
And Don and others for the monitor that is so much more lyme friendly than my other one was before it went silly on me from old age.
I thank those who are providing the Xango. I do believe it has been a key to helping me survive too.
And to karen and her husband who drove me to see my lyme doc. They were such a pleasure to be around.
And for the first time since i started seeing my lyme doc, I have been able to follow through with all he suggested due to Karen.
I thank the organization that provided the power chair for me. (Continued to knock on doors in need of power chair from when I came down sick in Oct. 2001 until finally receiving one last month)
If it had not been for Don, I do not think that I would have keep trying to find a person to repair the wobbly back tires on my old power chair.
This resulted in me making connections for the new power chair.
Still use the old power chair to get to and from the car. I park it under the stairwell at the new apartment.
So, I still thank Don and others for getting it going for me. Still need the back wheels fixed. They still wobble. HA! But, very low priority for now.
I am thankful for the friend who donated her old car to me after she purchased a new car for herself that was not such a gas hog.
Since, I just go very short distances in her old car...gas is not a problem for me.
I am so enjoying having the option of driving or using a power chair that reclines to get out and about now.
I also am thankful for Sherry and Sue who have made sure I have something to eat and help out with household chores.
They also are very pleasant to be around and do a great job.
I am thankful for the maintenance man who hung the drapery rods for me. He did a great job.
I am thankful for the people who helped me move from one apartment to another in town recently.
They were very pleasant.
And for the guy who fixed the flat in my old jazzy and then came back and did something so it was not rocking and rolling...adjusted something on the inside of the tire and rim.
He was able to put slime in the tires so I no longer had to worry about being out and getting a flat.
I am thankful for the people at the grocery store who help me when I am struggling to get groceries.
They always seem to show up just at the right time and help me keep going with the next step to getting the job done.
I am thankful for the senior van drivers who help me get places in my power chair.
I am thankful for my friend Phyllis and Denise who have been there for me. Denise for years...even before lyme. Phyllis for 2 or 3 years now.
Looking for a local friend to do things with when able. But, that will come.
I am thankful for the person who started up the service dog training classes twice a month in town.
Hoping to be able to attend them more. They are in the afternoon now. I am usually not functioning around 1 pm so it hasn't worked out to well yet.
I am thankful for the service dog that was provided for me. Although the waiting list was long and it took years...it appears I got her at the right time.
I was not quite up to taking care of a dog at first but am doing so much better now.
I am thankful for my lyme doc and all that he has helped with...big list.
I am thankful for the emails and post cards.
A side note is needed:
I was going down a path that I did not want to go down not to long ago.
I was thinking that giving up the ghost so to speak as I had read regarding other lyme patients was making sense to me.
I no longer knew how or what to pray for. From Oct. 2005 to just a few months ago.....i wondered if those that stopped livng here on earth with lyme had made the right decision.
Now, I don't even go there.
The strange thing is, I was doing better physically and mentally for the most part.
Then, so many people started coming into my life and I had access to a computer again, my power chair was working again...both survival things with lyme for me...
My frig at the new place has been full since I moved here. Still amazes me.
I was able to get over to see my lyme doc.
The doors opened for me to change my residence...haven't seen the police here once since I moved here.
Much better atmosphere.
The church helped pay the deposit and helped me move although I have hardly been able to attend church.
Ok Enough yammering.
Ah Yes. Waking up feeling like a semi truck fully loaded had run me over in the middle fo the night..finally stopped after years.
Started taking sleeping meds...so I now am able to get some sleep at night after years of not getting a good night's rest.
So for those who help....with either big or small things....it makes a big difference.
As far as what I have done....
My time will come. For now, I do what I can. Mostly, it is writing letters to editors thanking them for educating others about lyme.
Or contacting political folk in hopes it will make a difference.
[ 22. July 2007, 01:22 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I would like to read about Melanie, Tin Cup, Phyllis, LDA Pres...sorry can't recall your name right now
The many who reach out and touch others in a positive way on this board
Lyme group support leaders.
Columbia Research Center
The newsletters: Lyme Times and the other one
The vet..sorry can't recall his name
The Healthy Guy
The Lyme Literati Group
[ 22. July 2007, 01:20 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
To support other lymies: try to give out as much doctor information as I can. Answer posts and pms. Help my GP who is lyme friendly and becoming literate help the practice's other lyme patients. It is just a small bit that I do.
Posts: 719 | From Delaware | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Lymetoo:
quote:Originally posted by Geneal: Don,
You and I both know better.
YUP!! Busted, Don....BUSTED!!!
Yup! Totally busted!!!!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Boy, do I feel broken and down hearted,,,
I cant EVEN pull a tEEnsy weeny wittle bit of wool over a couple ole decrept lymies eyes.
I am defeated!! Story of MY life,,too little too late. Alas, I live to TRY again,,,someday???
Meanwhile does anybody need ANYTHING??
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Yeah! I think Toots, Geneal and I need not to be called old, decrepit* lymies.
(whether we are or not is another matter. entirely)
*please note: I have no idea how to spell that word.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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quote:Originally posted by trueblue: Yeah! I think Toots, Geneal and I need not to be called old, decrepit* lymies.
(whether we are or not is another matter. entirely)
*please note: I have no idea how to spell that word.
Yeah....now you're in big trouble, Don!! BIG!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Don,
You are an Angel among men.
Your generosity of spirit and self is a shining light for others to follow.
I feel kind of old and decrepit this week, so I'll let that one slide.
Hopefully next week, I'll feel young and spry again.
Now, if I can just look that way.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well I just want to say thanks to everyone who has answered my relentless questions.
I am also grateful for those of you being here for me when I really thought I might/wanted die. ( hopefully this will not happen anymore0
I am grateful for the doctor info ( all the info) that was given to me.
I am grateful to my family who have supported me through this terrible time and that entertain my kids and have given me and hubby money and groceries.
Well I am new to all this, but I have written about 10 letters to the local media to inform about the risks of TBI in our area.
I have emailed every person I know and tell them about my expereinces and what I have learned from you.
I have contacted my employer and asked to do a presentation on Lyme disease. I plan to be a major leader in my area to inform the veterinary profession of the risks of TBI to the staff.
I am a well respected veteran technician with training and management background. I plan to use this to my advantage.
I work for the largest animal hospital corporation in the us.
( I really think the vet profession is a major area to get involved in Lyme awareness)
I have been offered the position of safety manager at my hospital apon my return someday.
I hope to start a support group in my area when I am well enough and have enough knowledge since there are really none around here and I am too sick to travel an hour to go to one.
I have told every person who has asked about Lyme disease everything I know so far.
So I have high hopes of turning this very terrible experience into a positive one in the end. My view is if I dont, I went through all of this pain and suffering for no reason.
Melissa Posts: 3905 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
melissa,
i was so happy reading your post of your POSITION in which you will be using all your newly acquired skills and being a SAFETY OFFICER where you work when you are able to go back. ' YOU WILL MAKE A HUGE DIFFERENCE and starting with the largest sector in USA! Hats off to you!
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posted
Being a "newbie" it has been very interesting reading all that people are doing, and I hope to be able to provide support to other lymies in my own way someday. I'm not feeling too well right now, but I will be thinking about ways to share what little knowledge I have with other people. By the way...I haven't seen any postings from people in NY. Any out there?
Posts: 2 | From Albany, NY | Registered: Jul 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Just Don, you make us all laugh, thats what you do. And that can be a big achievement with us lymies!
I try to educate people about lyme disease. I have a myspace page dedicated to lyme awareness.
I tried to start a support group in Wisc and we met a couple times then it kind of fizzled due to everyone being too sick to make it every time (
I have bumper stickers and wear tshirts and tell everyone I know about it.
I give rides to people who cant make Dr appointments, even though I probably shouldnt be driving either!!
I have helped someone with supplements they couldnt afford because I happened to have bought triple amounts from my llmd. Dont ask me how I did that.
Now for the list of how people whom have helped me:
Someone helped me with medicine I couldnt afford.
Both of my workplaces have been very helpful and understanding.
My family has been pretty supportive.
all you people on lymenet are great to vent to and find out info from.
My youngest daughter Danielle has been my Angel God sent me. She has picked up so many responsibilities God Bless Her.
posted
The post about support groups that fizzle out because people are too sick to come.....makes me say again that we need action groups organized, whether or not they get together physically. So, keeping a list of people who can chime in locally or on a state-wide basis needs to be done. Better yet if this keeping in touch includes a state internet group for those who have computers. Phyllis has set up a number of these groups on yahoo. So, take advantage of them.
It often seems to be the case that there is more complaining going on than action, and people don't get together for better coordination. A group of people always gets more attention than individuals acting alone, unless that individual is Bill Gates or Warren Buffet, etc.
Posts: 8430 | From Not available | Registered: Oct 2000
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I send herbs to CitrusLyme periodically, and try to help her a bit via email without 'playing doctor' too much.
I'm currently organizing a fund among our friends to help a friend of ours who's having a Lyme relapse and is very poor get into treatment, and I'm paying a bit of the costs myself.
Luckily, our community (martial arts people in our town and others from a fairly large activist scene) are now taking this VERY seriously because of my and another friend's experience- and there's an understanding that this is serious, and it'll take a year or two at the least, and that this girl's meds are going to cost a lot. I hope it continues.
Our community really turned out for Sara, my other friend with Lyme, when she eventually called for a 'support group' of our friends to help her get to doctors and figure out what was wrong, so there's a good success story in our circle already (she got treated and is doing great).
Initially our community didn't respond well to me and her getting sick because we didnt know what we had- people really dont' seem to do well with that. It's opened my eyes to what a few personal contacts such as my conversations with them can do in terms of making life easier for future Lyme victims in our circle.
I buy copies of the Buhner HEaling Lyme book and give them to people I know who are sick with Lyme and aren't on the Lyme forums (including some friends-of-friends whom I didn't know personally- I just send them via Amazon).
I'm friends with a few rural enclaves of hippies here and in North Carolina and I've tried to get the book into a few households- people who are homesteading dont tend to go to doctors. if they're in this area I write in the ILADS guidelines URL and the address of the LLMD that I go to.
I've talked with new Lymenetter Sparkle7 about putting out a Lyme 101 brochure sometime in the fall to try to get into distribution. She's written some really good concise info about the disease (she's a publisher or something like that) and I think her writings would make great material for a brochure that people could print off the web and drop off in doctors office waiting rooms, give to their family members, etc.
I periodically search for the Lyme keyword in the San Francisco social networking site that I frequent (tribe.net) and try to connect with people or discussion threads that come up in the search results to make sure that folks are getting good info. Someone who can stand MySpace should do this there- I just can't stand the site.
Everytime I hear someone say they've had Lyme, I try to take 10 minutes to talk with them and make sure it's really 'had' in the past tense, and not 'have' . Most of the time they really do still have symptoms and don't know that they can do anything about it, or think their symptoms are something else.
Yesterday I had a long, long conversation with a very clumsy acquaintance of mine who had Lyme- the clumsiness in my opinion (he injures himself constantly) is due to remaining Lyme issues. I kept telling him the more recent ILADS outlook on it, asked him what he was treated with in the past, told him that his remaining neuro symptoms could potentially be made to go away, told him about the neurotoxin theory about what causes some of our symptoms, etc. He's now going to seek further treatment which I feel really good about.
Last month I took a couple of days with a very good friend of mine who I hadn't seen in years who seems to have Lyme symptoms (he gets tick bit all the time due to living out in the country) and I went to his doctor with him and tried to argue that they should do an iGenex blood draw- he tested negative on a Quest ELISA test and thinks he might have Lyme in spite of the negative test, but he's just too sick to deal with doing the research needed to present the info to his duck. I think having someone knowledgeable present was helpful but this was a rural public health clinic and because of their policies they couldnt do it. He's going to an LLMD next.
-------------------- Symptom Free!!! Thank you all!!!!
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Cobweb
Unregistered
posted
AHA-Found you again Stymie-great sleuth that I am-who's learned to hit profile and then recent posts!
About the chocolate-I might have been able to hand deliver Geneal some chocolate-but we make plans-and God laughs.
My girls will be leaving August(soon) can't find calendar, first weekend in August-next weekend-for Camp Restore in New Orleans. Initially I was hoping to go along-just to meet Geneal !, but what stymie says- renovations on my apartment due to fire will be going on
Also I'm still on the IV, should be last month though. If a picc line goes south things can go wrong pretty quickly and i don't want the focus for their trip to be saving MOM instead of rebuilding New Orleans.
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
COBBY ,i'm real sorry to hear about the fire. you seem to have my luck, murphy's law luck
what can but shouldn't happens ,happens anyway.
please pm me your address and we will wait for september or october
geneal pm me for august delivery.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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bettyg
Unregistered
posted
well, i finally mailed my letter to the millionaire today about helping to finance the UNDER OUR SKIN DOCUMENTARY so it can be finished and be shown around USA/elsewhere to us LYME patients/families, and public.
plus i mentioned another lyme project to him also.
we'll see if i hear anything back, and IF I DO, I WILL POST IT HERE "LIVE"!
got my fingers, toes, eyes, hands, legs, and anything else i can think of CROSSED!
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bettyg
Unregistered
posted
guess who i heard from today?
not the millionnaire YET, but director Andy Wilson, UNDER OUR SKIN! I forgot I wrote him letting him know what I had in mind for writing our millionnaire.
he was going to send me a letter and DVD about the film in progress so far on a DVD and a fundraising info packet. he'll send to me but also to the millionnaire i wrote to.
he was greatful for my signing up to be on their email of happenings/fundraising events!
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