.
United we stand, divided…
we don’t get nearly as much done.
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You may have noticed that Lymenaide has taken on a distinctly awareness oriented feel. You might be wondering what happened and why there are so many less personal and informative posts than there use to be. Or, you’ve already put two and two together.
Lymenaide is evolving. When I started the Paint May Lyme Green campaign I had no idea where it would lead. Turns out, I’m pretty good at this awareness stuff. I want to continue to fight for Lyme disease awareness.
So do some of my closest friends. We all met online and we all have our own blogs. We also all have the same goals. We believe that as a team we can accomplish much more than we could individually. We have decided to officially join forces.
Lymenaide is becoming “the organization”, an awareness agency dedicated to helping non-profits spread awareness about Lyme disease and other causes. LymeBites is going to be Lymenaide’s official blog (this is where you will find us posting the personal and informative articles that made Lymenaide so popular). Victorious Vixen is going to be heading up our craftivism endeavors.
Think of it as one organization with different departments. That hopefully explains what we are. Now on to who we are.
Ashley van Tol- That’s me! I started Lymenaide about three months into my Lyme treatment. I was a friggin mess at the time. I couldn’t think straight, had a hard time speaking and I was so sensitive to everything sensory my doctor pretty much told me not to leave the house. To top it all off I was completely and utterly lost and confused about what exactly Lyme disease and everything that went along with it was, and what that meant to me and my life.
Nearly a year later I feel almost back to normal. Another reason for there being less posts on Lymenaide and the reason I was able to accomplished so much for Paint May Lyme Green.
From this point on I am going to focus on the awareness projects and fundraising we are planning through Lymenaide. I’m also going to be doing a lot of sewing for our craftivism projects. If you haven’t noticed yet, I love projects! I was the kid at school you always wanted to get stuck with on group projects because it was going to get done and your were going to get an A. I also kicked *ss in home ec. I once got in trouble for sewing too fast.
I will continue blogging as well, mostly about awareness but not exclusively.
Eric Rutulante- I was diagnosed with Lyme disease in June of 2009 after 20 or so years of unexplained illnesses and problems. I began LymeBites in December of that same year, which was about the time the disease began to let go of some of the grip it had on my brain which made it impossible for me to write. LymeBites began to evolve early on, as I met Ashley and began to write for her website along with my own. It was then she had this idea and a vision for the very successful ‘Paint May Lyme Green Campaign’.
I was angry that I had been allowed to get so sick when I grew up in an area that is endemic for Lyme disease. Lyme awareness made the most sense for me to direct my anger towards. I felt of myself as a lost case as far as saving from Lyme disease, but I decided I would be damned if I was going to allow people to go through the living hell that Lyme disease is. If I couldn’t stop my own disease from happening, I could stop others.
The biggest thrill for me in this when we hear of specific examples of people who were prompted by our campaign to get tested for Lyme, only to find out they had it. Through the campaign, and LymeBites I got to work with and get to know Nani and Candice. It’s an honor to work with, and be part of a team of such inspired, motivated and brilliant people. We are committed to save lives through awareness.
Nani Luculescu- Nani may not have Lyme herself but she is an honorary Lymie to us. Her dad has Lyme disease and Nani has become an activist for our cause. She help create some great Lyme facebook groups and she was there helping out with the filming of the PSAs and interviews this May.
Nani is heading up our craftivism department. Through her art and sewing Nani has been promoting Lyme awareness through her projects like Project Lyme Art Quilt. We have lots of plans for the craftivism department! Exciting stuff that you can become involved with. One of the most important goals for this is to raise money for our cause and for the crafter.
Nani will also continue with her efforts contacting politicians and encouraging others to do the same. This is an important piece, as you all know, to our Lyme puzzle.
If you don’t know Nani’s blog, get to know it- Victorious Vixen
Candice- I was diagnosed with Late Stage Lyme Disease at age 19, after more than 3 years of suffering mysterious symptoms. By the time I was diagnosed, I was in pretty bad shape, and had to drop out of college at U.C. Davis and move back home with my parents. Upon diagnosis, I assumed that I’d begin to gradually get better, but unfortunately I progressively got worse. Two years after diagnosis, I found myself completely debilitated and completely confined to the house by Lyme, Multiple Chemical Sensitivity and Dysautonomia.
I’m 21 years old now, and have been through the wringer, but over these past couple of months I’ve begun to make improvements for the very first time, and have a new found sense of hope and optimism. Just this past May, I woke up one morning and to my very surprise, found that I could write again. Inspired by Lymenaide and Ashley’s “Paint May Lyme Green” campaign, I started my blog Infectiously Optimistic and began writing for awareness and understanding. I set a goal for myself to touch as many people as I could from my spot on the couch, and to not only educate the community but provide other Lyme patients with much needed hope.
By the time May had ended, I had found myself knee deep in awareness projects, and absolutely loved every minute of it. I was presented with the opportunity to join the Lymenaide team, and didn’t hesitate for a second before accepting. I’m honored to be a part of the team, and can’t wait to see Lymenaide’s bright future pan out.
Others- We aren’t alone in out efforts. We are supported and helped by many people in the Lyme community. The more the merrier we say! If you would like to know what you can do to help us, or you have ideas, send us a message.
Ashley
Awareness/Fundraising
ashvantol@lymenaide.com
Candice
Celebrity/TV Contacts (you can give them, not get them)
cmitch0320@yahoo.com
Eric
General Enquiries/Blog Topic Requests
LymeBitesDotCom@yahoo.com
Nani
Craftivism/Activism
nani@VictoriousVixen.com
June 21, 2010 at 12:53 pm
I love it! You guys have literally changed the world for the better with your campaign, and I love to see where it’s going. I love all of your blogs, all of the PSAs, and everything you’re doing. It’s been so great to be able to point people to Lymenaide the Paint May Lyme Green campaign for info.
And you inspire me to do more! Just 6 months after remission, I have Lyme once again. It’s been a brutal reminder of how painful, scary, and expensive it is. And how this disease doesn’t play fair. In the words of my doctor, “lightning can strike twice.”
I’m so grateful for the efforts of the Lymenaide team!
June 21, 2010 at 9:51 pm
I’m so proud to be a part of the Lymenaide team and we need other volunteers to step up & offer in what ever capacity you can. There is lots to be done & your ideas & suggestions are welcomed! =)
woo-hoo!
June 22, 2010 at 6:23 am
Ashley, You hit it right on the mark when you stated above, ” United we stand, divided…we don’t get nearly as much done”.
I have been involved in the Lyme world for the last decade ( missed being diagnosed for 27 years but finally clinically diagnosed by Dr. JoAnne Whitaker, MD, treated, and got my life back). In the last decade I have found the biggest challenge is the division in the Lyme community. Despite trying to bring support groups and people together. Perhaps your generation can find common ground in the Lyme community, and bring people together?
I believe it is the only way research, patient care and an improvement in diagnosing, treatment and even a possible cure can become a realty.
My sincerest best wishes,
Sandi
June 22, 2010 at 9:02 am
Thanks Sandi, I think you are right. It isn’t easy but I’m hoping my generation can unite and make some major changes. I’ll keep pushing for it!
June 23, 2010 at 6:49 am
I am asking a question that perhaps someone out there would know. I have been diagnosed with CFIDS and the possibility of Lyme. I’ve had postive 23 and 41K bands on four Western Blot tests now. Even my doctors are confused!! I’ve never had Lyme Arthritis or Bell’s Palsy but I’ve had every other symptom includeing the worst, not being able to read, comprehend or even walk..get lost.. auto immunity in tissues and muscles…for over 40 years. Born and raised in Lyme Epidemic area Lake Placid . N.Y. I was hospitalized when I was 2 with what they called Puemonia. Anyway, I had many, many opportunities to be bitten. My mother died of this disease which went into parkinson’s. There is literature out there that says you can get a false positive if you’ve had Epstein Barr.. I’ve had all the herpes group latent virus’s over the years many times. Please someone help me. Ask your doctor if he’s Lyme Literate please. Thanks Nila.. This is a great Web site.. Don’t work too hard now, remember stress is our enemy! Love and hugs to all those who care.
June 23, 2010 at 10:04 am
Thank you for all the work you do!