I was in the hospital all weekend due to my spinal taps. Nurses, docs, x-ray techs were all interested in Lyme. I talked with them, and I want to be able to inform people the truth about lyme.
I attend Brigham Young University Idaho. Also, I am getting married next month.
How can I become an advocate?
Thanks!
Posted by Dekrator48 (Member # 18239) on :
The best thing you can do is educate yourself really well first so that you are sure you know what you are saying is true.
There are many links to info on this site at the top of each board.
Then you can get involved in contacting your state's representatives,etc to tell them your concerns.
You could always start a support group.
You can create awareness through wearing a lime green ribbon on your clothing (people ask questions about it), showing the movie "Under Our Skin" to your family and friends, and maybe you could incorporate lyme into a paper or school project.
There's alot to learn....good luck!
Posted by trishee (Member # 9699) on :
You can order FREE brochures from the Lyme Disease Association website and take part in "Ribbons Across America" which asks the homes, business put lime green ribbons out for all to see. The month of May is a great time to ask town/city official if you can put "Ribbons" on Town Common/Park trees to help raise awareness. Good for you! Blessings, Trish McCleary wwww.S-L-A-M.org "Ribbons Across America" founder
Posted by Lymetoo (Member # 743) on :
Good job, Stephanie!!
Posted by Robin123 (Member # 9197) on :
Great, Stephanie - you can get some free brochures from www.lymediseaseassociation.org to pass out.
Posted by Keebler (Member # 12673) on :
- First, find a good LLMD or LL ND and get started on your own treatment path.
Get the books, read the links . . . read, read, read. Take care of yourself so that you can get better. You will learn as you go. Then you can best help others.
As your ID doctor is not on board with treatment, you might be careful how many people you talk with you have access to your medical file. Often, our enthusiasm will be recorded in a chart and can interfere with our treatment later. Most doctors think lyme is no big deal at all.
By your talking to the others where your ID doctor works, it makes either you or the doctor look bad because what you say does not match with what the ID doctor says. It can make for a rough road.
Your enthusiasm is good to see but you will first need all your energy to learn what to do for our own treatment path. Along the way, you can help educate others about prevention with brochures, etc. -
Posted by jblral (Member # 8836) on :
I agree with others who have said you must first concentrate on getting well. Read the books and websites, participate in on-line support groups and in-person support groups if you happen to have one in your area. Then, share the information with family and friends. Have you seen the DVD "under our skin"? Perhaps you could have a showing at your house and invite some folks over to watch it with you. There are a lot of educational resources on CALDA's website at www.lymedisease.org. Good luck on your Lyme journey.
Posted by pmerv (Member # 1504) on :
Lyme Disease Association -
Posted by schnuddelka (Member # 8031) on :
See my post what one can do but basically, don't remain silent. I like what others said about making sure you know what you're talking about... but then say something, shout something!
Talk to your local paper and get a reporter to share your story! They almost always say yes, and it helps others see the gravity of this disease!
Good luck! Anything helps, silence kills! Good job Stephanie in asking! That's the first step!
Posted by karenl (Member # 17753) on :
Many of sick students need to take years off, till they feel better and can continue studies.
They need to keep their scholarship and their right to get teir education later.
Also it would help if they could study part time and keep the scholarship. Or get the right to cancel a course without negative impact if they are not able to learn so much and just take the same course again next time.
How do you manage to study with the diseae?
Posted by Robin123 (Member # 9197) on :
Hey Stephanie - May Lyme Disease Awareness month coming up - I hope you do some communicating with folks about this!
Posted by greengirl (Member # 25316) on :
There's a graduating HS Senior in my area who works with a local support group to arrange viewings of "under our skin," and has local LLMD's do a presentation and answer questions prior to the movie. She also tells her story.