Posts Tagged ‘Activism’

United We Conquer!

// June 21st, 2010 // 4 Comments » // Family of Lyme, Lymenaide Awareness Campaign

hands together

.

United we stand, divided…
we don’t get nearly as much done.

.

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 Mitchell- 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


A Priest, A Rabbi, and a Tick Walk Into A Bar…

// June 12th, 2010 // 24 Comments » // LymeBites Blog, Lymenaide Awareness Campaign

…okay, I have no joke to go along with that, I just wanted to get your attention.  Writing these posts are the easy part, it’s the titles that are tricky!

At about 2am last night I began a herx of which I have not seen in many months.  I’ve only had one that bad since I began treatment a year ago.  (For those new to the lingo, a herx reaction is what happens when antibiotics kill the Lyme bacteria, the bacteria die off often makes you feel worse than the disease itself, but it’s a good sign because the bugs are dying…you just have to give your body time to get rid of them).

So today is not my best day for writing.  After a night like that my entire body is just worn out.  In fact I couldn’t drive today to go to a function I had in Albany, but instead had to have my Mom drive me up so I could still make it to a gathering of my office mates and co-workers (which I guess is really the same thing). 

But today is an important day that I really have to write about, if only for a brief time, and if done while in the throws of a herx reaction.

It was one year ago today in the middle of the afternoon my phone rang, it was my Dr.  “Eric” she said, just beaming with excitement, “guess what!  You have Lyme disease!  Isn’t that great?  Everyone here in the office said they’ve never seen anyone get so excited about someone having Lyme disease, but I told them there has been something wrong with this guy and we just couldn’t figure it out!”  She told me she’d call me in 3 weeks of doxycyline and I’d feel better in a few days.  I figured I’d even be able to make the Dave Matthews Band concert 2 days later if I was gonna feel good that quick.

On that day, one year ago today I was so happy it wasn’t MS, or Chiari, or a brain tumor.  It was something that would just go away.

A year later, well over $40,000 out of pocket, 8 different types of antibiotics, countless supplements and natural medicines, and 365 days of stress and worry for my loved ones, I can honestly tell you that never in my wildest dreams could I have EVER imagined what I was in for.

Under Our Skin was just showing in Albany that next week.  By that point in time I was so sick I was calling friends to tell them what things they needed to come and get out of my apartment because I was sure I was going to die.  That was my first herx, but nobody told me that would happen.  After seeing the trailer for Under Our Skin my friend Mark said to me “you realize you may never get better?  I watched that trailer and then did some reading, some people never get over that sh*t (he always had a way with words)”.  I told him his glass was always half empty, there was no way I could be sick forever.  Lyme disease was not a problem.  If it was I would know about it since I grew up and spent all but 4 years of my life living in the heart of Lyme disease country.

But I was wrong.  Almost deadly wrong.  I honestly believe to this day if  I had not found Dr’s who were willing to treat me (at first it was people who didn’t know what to do for me, but they knew they had to do SOMETHING) that I would not have made it.  I know I was close to death on several occasions.  And yet, I was wrong.  Somehow I had lived here all that time, surrounded by Lyme disease all that time, and I didn’t know a damn thing about what Lyme disease could do, all that time.

I still look back on one year ago today and wish it was a different diagnosis.  Even cancer, because I could have either fought it or died from it, but at least there would be an outcome.  Now with Lyme, I don’t know if I’ll ever have an outcome.

So that brings me to my point.  And to all my friends and family who do not have Lyme, I do not apologize for the constant flow of emails I send out to you, to those of you on Facebook I do not apologize for post after post about Lyme disease.  I do not apologize because nobody told me what could come of Lyme disease, and I wish every day that someone had so that I wouldn’t be in the condition I am in now. 

So I am going to fight to make sure each and every one of you know that this is what Lyme is.  This is what Lyme does.  This is what Lyme looks like.  This is the face of Lyme disease. 

face of lyme crying 

I can’t let this happen to another generation of people.  That is why today, one year after the diagnosis and promise that I’d be better in a few days, I am so proud to be part of a team with Ashley, Nani and Candice, as well as the hundreds of others who help us on a daily basis to get the word out there that Lyme disease can kill you.  And if it doesn’t kill you, it will take away your life.  So we join as a community to continue to fight to save lives.  Will you commit to join with us in making sure others don’t suffer like this?

Grass Root Support Surprises the ‘Twit’ Right Out Of Us, Thank You For Such A Wonderful Surprise!

// June 10th, 2010 // 2 Comments » // Lyme PSA, LymeBites Blog, Lymenaide Awareness Campaign

twit pic To begin, let me tell you a bit about Twitter.  According to Wikipedia – Twitter, “is a social networking and microblogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author’s profile page and delivered to the author’s subscribers who are known as followers.”

Okay, what does that have to do with anything?  Ashley and I have spoken at great length in our awareness campaigns as to the importance of social networking and media sites in getting our message out.  Look at May.  The simple idea of a campaign for Lyme awareness literally blew up across the country and hundreds then thousands of people joined in.  Do you know how many people became aware in May?  Do you know how many lives were saved because of that awareness?  A great deal of credit has to go to Facebook, Twitter and the other social media outlets for their help in helping us spread our message.

Yesterday we received quite a surprise from Chloe, or in Twitter terms @TVD_Chloe, as she agreed to donate $.05 for each new follower following her on Twitter.  Wow…we were quite taken aback, but not surprised because of the amazing support the fans of The Vampire Diaries have given us since the stars of the show helped out with the PSA’s.

Then suddenly today I saw the following tweet (that’s what they’re called for you non-Twitterers):  @luckytobesilver is donating $.10 to the campaign for every new Twitter follower she gets.

Ashley and I set about to telling people, as we were getting messages on Facebook as people were adding these people on Twitter (and raising money for our awareness campaign at the same time), we suddenly saw another Tweet pop up!  @Christi_Roberts joined forces and is offering $.05 for every new follower.

Ashley and I can’t help but be astounded at this additional boost of support.  It is a huge help to the campaign, and to what we are trying to accomplish.

But then suddenly, I couldn’t leave my computer to go to the bathroom without more people joining onto the cause!!!  People were joining in so quickly (and Twitter kept crashing today, AKA the epis whale fail, also in Twitter lingo) Ashley and I couldn’t even keep up with sharing the information with each other, let alone to keep retweeting it and sharing on Facebook.  It was wonderfl!  But to make this easier, I am simply going to list out all of the following people who are participating in this fundraising project for the Lymenaide and LymeBites awareness projects we are planning.  As this expanded it now includes Twitter and Facebook and regular websites.

Less than half of these people have Lyme.  The others became friends to the Lymenaide/LymeBites awareness cause through the Public Service Announcements that we did as part of Paint May Lyme Green.  Through their new understanding of this terrible disease, they have been prompted to action.

Twitter
@TVD_Chloe is donating $0.05 for every new follower on Twitter from 06/08-06/15
@Christi_Roberts is donating $.05 for every new follower on Twitter from 06/09-06/15
@luckytobesilver is donating $.10 for every new follower on Twitter from 06/08-06/28
@icarusalsoflew is donating $.50 for every new follower on Twitter from 06/09-08/04
@Shannahg22i s donating $.05 for every new follower on Twitter from 06/09-06/20
@CAccolaWeb donated $20.00 today, which was for her donated $.40 for the first 45 people to follow her on Twitter
@lailakhangi is donating .20 euro for every new follower on Twitter from 06/09-06/30 (she is also donating .20 euro to Gulfaide)
@thelymegarden will donate $.06 for every new Twitter follower fro 06/09 until they receive 60 followers (the donation will be split between Lymenaide and CanLyme)

Blogs
Alyssa’s Blog – http://simplyalyssadreaming.blogspot.com -  for every person that subscribes to her blog from 06/09-06/16 she will donate $.05  June 9 and June 16 she will donate .05 cents to the Lymenaide campaign!!

Facebook
The Lyme Garden – Facebook Page will donate $.06 for every new follower of their Facebook page for the first 120 fans (The donation will be split between Lymenaide and CanLyme)
Craig Bancoff – Facebook Page will donate $.50  between 06/10 and 06/17 for every new follower of his Facebook page or new member of his website, you can Register Here for Craig Bancoff\’s Website.  Now in addition, for those who do not know ,Craig “is a musician suffering from chronic, neurologic, late stage Lyme disease and would like to show our support by helping raise money for Lymenaide.”  So beyond the amount he will donate for new followers, but for the same dates if you purchase the digital download of his CD he will donate $5.00 to the campaign!  If you purchase the CD from iTunes or CDBaby he will donate $3.00 for each purchase of the CD.  To get the digital download go here: Craig Bancoff – Merchandise.

And as a show of good sport, I will donate $.10 to the Lymenaide/LymeBites campaign  for the first 200 people to register with the LymeBites website.  Click Here To Register With The LymeBites Website

This is where you come in.  Are you on Twitter yet?  If not, please join and create at Twitter account at www.twitter.com.  Then go into search and enter all of the names above on Twitter and follow them.  Just by doing that you will have raise a lot of needed money for our campaign.  I actually figured out that if you did each of the things listed above you would raise about $7.00 for Lymenaide and LymeBites awareness campaign.  If we get just 500 of our collective followers and readers to actually do all of that, we could raise $3,500 for the awareness campaign without even having so spend a cent!  What could be better than raising money for a worthy cause without spending money?  It just takes a few minutes of your time, and we really need the additional funding to be able to complete our upcoming projects.

If you are already on Twitter then please add the people listed above also.

If you are on Facebook, please go and add the Facebook people for them to donate to the campaign.  And I highly suggest everyone register with Craig Bancoff’s website to also help us out, and while you’re there check out his music…purchase the CD and we will raise even more funds!  In addition please fan our Lymenaide Facebook Page, our LymeBites Facebook Page, our Victorious Vixen website run by our partner in Lyme Nani, and Candice’s Infectiously Optimistic Blog.  All 4 of us can be followed on Twitter and Facebook also.

And to all of these fans of the campaign, as well as those with Lyme who have gotten involved, we thank you so much for your support of this cause, your help in raising awareness and understanding, as well your assistance in raising the much needed funds to continue with our awareness campaigns and save lives.

If you’d like to make a contribution directly to our campaign through a different form of payment, there is a ‘Chip-In’ section in the top right of the LymeBites homepage, you can make a secure donation via PayPal or credit card there.  For other ways to make contributions via checks*, etc., or about sponsoring our awareness projects as well as questions about our campaign please contact Ashley at ashvantol@lymenaide.com or myself at LymeBitesDotCom@yahoo.com for more information.

Together we can continue to build the strength and momentum of our awareness campaign as we prevent another generation of illness.  We can’t let that happen, please help us prevent it!!

P.S. Please check out the montage of all the PSA’s we did that was put together by Chloe to the right of the post.

*Donations made by check to Lymenaide are not subject to any service fees. All other donation avenues; PayPal, Chip-In, Causes have services fees of between 3% – 12%. That money is taken away from your donation and goes to the payment service, and credit card fees. Checks can be made out to Lymenaide and mailed to: Lymenaide – PO BOX 290 -  Tahoe City, CA 96145. Direct payments to Lymenaide are not tax-deductible. The only way to make a tax-deductible donation is through the Lymenaide Awareness Causes Page on facebook sponsored by PANDORA.

@TVD_Chloe to the Rescue!

// June 9th, 2010 // No Comments » // Fundraising for Lymies, Lyme PSA, Lymenaide Awareness Campaign

@TVD_Chloe

@TVD_Chloe

I have been making a lot of new friends online lately who surprisingly, don’t have Lyme disease. Seriously for the past year everyone I have met, I have met because we both have Lyme. I know you all know exactly what I am talking about.

Now I am meeting people, still because of Lyme, but not because they have Lyme. These people want to help Lymenaide with our awareness campaigns because they believe out cause is a good cause.

One of my best new friends is Chloe. Chloe didn’t know anything about Lyme until this May. Well, that isn’t entirely true. She knew that you could get Lyme from a tick.

Chloe’s eyes were opened to Lyme disease because of out Paint May Lyme Green Campaign. She found out about Lymenaide through Candice Accola and the other Vampire Diaries cast members who stared in our Lyme disease PSAs.

She was a huge help this May, tweeting and re-tweeting to her followers about Lyme disease. She wanted to do all she could to help spread Lyme disease awareness. May is over, but Chloe is still devoted to helping us with our cause.

For the next week (June 8 – June 15) Chloe is donating $.05 to Lymenaide for every new follower she gets on twitter! If you tweet, follow @TVD_Chloe! If you don’t tweet, sign up today! There is a great community of Lyme tweeters and our supporters there.

Chloe is determined to use her voice in the V.D. (Vampire Diaries) community to spread Lyme disease awareness and to help our cause.

From Chloe-

Thank you for what you are doing with Lymenaide. I hope my contribution of $.05 a follower for the next week will influence people to follow in my footsteps. I really just want to help at least one person to be diagnosed, or who has no idea what Lyme is. Thanks again! :-)

From Chloe about the Lyme PSAs-

I think every single one of them gives an EXCELLENT message. They are all informative and easy to understand. The people that have never heard of Lyme disease that watch the PSA’s will be dumbfounded. The little facts in each one are absolutely unbelievable to most people. It’s a very strong and powerful message and I applaud you for bringing Lyme disease out of the dark. I found out about Lyme because of Lymenaide.

Check out this video montage Chloe made of our PSAs and posted on her YouTube Channel-
CLICK HERE

Chloe’s Links-

Videos: Chloe’s YouTube Channel – Vampire Diaries Vlogs
Website: Chloe’s Blog – www.ohmysalvatore.com
Twitter: Chloe on twitter @TVD_Chloe

THANKS CHLOE!!!

NY Team of Paint May Lyme Green Campaign Update

// April 23rd, 2010 // 4 Comments » // Lyme Media, Lyme PSA, LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

For just over 3 days now I’ve been working on a post to give an update on what the NY Team of the Paint May Lyme Green campaign has been up to, and what we have planned. 

So I sat down, went over a list I made with some of the team, and started writing.  I had it reviewed by two people, who each gave me their assistance and input on it.  At that point I then had 3 versions of a post I still hated.  I promised myself before my favorite show, Chelsea Lately, comes on at 11 that I would have an update out there. 

So I began to print all 3 copies of this post, which you remember I still hate, when I realized the cord for the printer is upstairs.  Well obviously, there is no way in heck I’m about to walk upstairs for the cord, so I closed all 3 copies and I’m just going to give you the basics. 

First, let me introduce you to the players:

There is me, I’m Eric.  If you haven’t caught on to that yet then we have a lot of catching up to do, but for the sake of those who are not knew I will proceed (but feel free to email me if you’re new, I love “meeting” and talking to the people who read the site). 

So me, Alyssa of Rhinebeck, Kacie of Poughkeepsie, Kim and Heather of NYC make up the New York team of the Paint May Lyme Green campaign.  Let me point out that this is just the original group that signed on to working with Ashley here in NY.  There are hundreds, if not thousands, of other people here in NY extremely occupied in spreading Lyme disease awareness.  Some with their own campaigns, some by doing showings of Under Our Skin, and many who are helping us with our campaign in any way they can.  But after this initial group many people began to join in, supporting us in many ways.  From gathering info on whom to contact, to actually writing letters for us to send to those we needed to contact.    

Here’s a quick list of what’s of been happening:

-          We created several different groups on Face book.  One for those of us with Lyme disease here in the Hudson Valley.

-          We joined with Dutchess County legislator Joel Tyner, helping him with a petition and resolution he had presented to the county.  He became involved in his part upon hearing about the grassroots campaign that was started in CA and spreading across the country into his own county. 

-          We also created a virtual event on face book, where everyone is changing their profile pictures to something lime green.  It’s not even May and hundreds of people have already begun coming up with amazingly creative ways of painting their profile pictures lime green.  It is exciting every day to see as more and more people join in on that to spread awareness.

-          We have someone working on getting us included in Rhinebeck’s local Memorial Day parade to march in lime green and promote awareness. 

-          We are also all providing some version of our “story” to be able to share with others come the beginning of May.  We have been able to go to several support groups, in NY and CT and interview people with Lyme disease.  It’s been emotionally taxing at times hearing one devastating story after another, but it’s also humbling to see so many brave individuals willing to stand up and tell their story to help prevent someone else from going through that they went through. 

-          We’ve also been able to film several other individuals with Lyme, parents of those with Lyme, and have plans to film a Lyme specializing doctor next.  Each of them sharing their story in an attempt to help raise awareness.   

-          We are creating individual pieces of each of the people interviewed, as well as creating several short documentary style pieces using parts of all our interviews. 

-          We are providing 2 and/or 10 minute videos telling our own stories in addition to having our written stories plastered all over websites and social networking sites.

-          We have been asked to speak at some of these support group meetings on what the Paint May Lyme Green campaign is, and we’ve been able to go in and explain it to them and what we are going to accomplish with the campaign. 

-          We’ve been asked to speak at different viewings of Under Our Skin, and alongside legislators in town and or city meetings.

-          We have been helping to raise the necessary funds for the PSA to be produced, including asking our friends to donate to the cause for our upcoming birthdays instead of gifts. 

-          We have organized a few viewings of the film Under Our Skin our local areas, to be added to the many other showings already scheduled.  Dr Steven Bock has agreed to speak at some of the ones we have organized, we are very lucky to have a Lyme expert on hand to answer questions.  The flyers and emails have been going out to many people letting them know how important it is to see this film.  Some of our friends have written heart felt letters pleading with local politicians and media to please attend a viewing of this film to learn info that could save their, or a loved one’s life. 

-          We are also joining the hundreds and thousands of people in other states as we put up lime green ribbons, magnets, signs etc for the month of May to make Lyme disease visible. 

 

I think that pretty much gives you an idea of what we here on the NY team of Paint May Lyme Green campaign have been up to.  There’s still quite a few days left before May actually arrives, and then we have an entire month to raise our voices and let people know what Lyme disease can do.  Through this awareness we will save lives, or help others get their lives back. 

This campaign is bigger than any of us here in New York, or anyone in any other state.  But it is an amazing campaign, under the creative direction of Ashley of Lymenaide, and so many of us saw what an amazing opportunity it would be to be a part of something so big, and so important…and more important, so possible.  There’s no reason we can’t spread awareness of Lyme disease this month.  So we join with our friends and partners in vision across the country to get ready for May 1, when we will really get the word out about Lyme disease.  There will be no excuses by June to not know about Lyme disease.  We are going to make sure of that!

Stay tuned for more updated as we approach May 1 and what the NY Team of this campaign is doing in conjunction with everyone else across the country.