It is Time... to talk about Lyme

By Julie Gagnon Prior
​Growing up, I always wanted to be a professional clown.  I was, and still am, in love with the idea of hiding behind a face full of makeup, silly clothes and acting goofy for the sole purpose of making others laugh and forget about their worries: If I were a clown, then I could make the world a better place - only people wouldn’t know that it was me underneath the costume.
When making the VT Pinup Girl Calendar 2020, I was adamant that my name not appear anywhere within the project.  Wisely, however, the printer told me in no uncertain terms that not only did I need to include my name, but I also had to tell some of my personal story.
In hindsight, he was right.  With a name attached, I had a marketing tool that wouldn’t have been there otherwise.
With a name in print, I am able to be a real live person.  Able to be part of newspaper and tv interviews.  Able to speak to others and share hugs with my real-life arms.  As uncomfortable as it is being on a soap box, I have had to put on my big-girl pants and suck it up.  It’s like my Dad said a few months ago.  He was referring to the outfit that I told him I was going to wear on a tv interview.  He said, “Nope.  You can’t do that.  You are being interviewed because you are a spokesperson for the Lyme community.  It’s not about ‘You’.  It’s about them.  Make sure to dress and conduct yourself with all of this in mind.”
To date we have raised $7,000.  Every penny, after taxes, will be presented to vtlyme.org, a non-profit organization whose mission is “providing effective prevention education, equitable information, and support for Vermonters affected by Lyme and other tick-borne diseases.”
You may wonder why I was driven to do such a project. To make an extremely long story short, I suffer from “Untreated Chronic Lyme Disease”.  November 1 of 2009 I squeezed an engorged tick off my hairline.  Doing exactly what you shouldn’t do, I inadvertently squeezed the poison into my body. Although I became ill, my primary care physician wouldn’t treat me because I did not get a bullseye rash.  I trusted him, and, despite continuing to become more ill, I chocked it up to the flu.
After many years of being diagnosed with “Chronic Fatigue Syndrome,” a visit to a Lyme Specialist resulted in the Lyme diagnosis, along with co-infections. I would like to stress that my case is relatively unique in its severity due to the fact that I wasn’t treated in a timely manner.  When treated properly, Lyme can be rough yet manageable.
I created the calendar to spread awareness to prevent others from the same fate.  Nicely stated, Untreated Chronic Lyme sucks manure.
About three years ago, I Googled “Vermont Lyme” and only found one site that provided support and education for the afflicted and their families.  That site was vtlyme.org, and that is how they became the decisive recipients of any money I made.
Sunday, Nov. 10, I was the guest speaker at the vtlyme.org support group. Rebecca Zelis, the organization’s founder attended and we had an opportunity to talk one on one.
I knew that Rebecca’s experience parenting a child with neuroborreliosis (neurological Lyme disease) led to creating the website.  But I learned more of her story and really how fate was running on steroids to bring us together at the perfect time in both of our lives.
Here’s some of her story that she wrote down for me to share.
 “VTLyme.org was started in 2016 and over the next couple of years my husband, Mark, and I worked to build it into a resource for Vermonters about Lyme disease and tickborne diseases. As we built VTlyme.org and we heard from Vermonters through the website’s contact page it was clear this was a bigger job that I understood at the beginning. 
During this time, we would get emails about people who were told by their doctors that if they didn’t have a bulls eye rash they didn’t have Lyme disease. Others had a bulls-eye rash and fever, but since their blood test came back negative their doctor told them they didn’t have Lyme disease (according to the CDC, a blood test will most likely be negative for several weeks early in the disease since the body has not yet developed enough antibodies to be detected in the test.) Like my son, Vermonters who have delayed diagnosis are more likely to have systemic and long-term problems so these stories were disturbing, but also helped Mark and I realize the importance of continuing our work.
Along with our commitment came the cumulative effect of years of stress and financial difficulties. I was reaching a breaking point and honestly considered ending my work on VTLyme.org. Julie, this was about the time you first contacted me. I just had reached a point where my emotional and physical energy and resources were absolutely GONE! Luke had relapsed and was quite sick again, we moved several times, and we were barely making ends meet - I was totally overwhelmed. 
A comical series of accidents led me to push forward a bit more and create a board in 2018. These brilliant and committed people on the new board had skills and energy I did not. They also gave me support and recognition for the quality of work I had done alone up until that point - which helped me regroup and reenergize. Through the work of this board, VTLyme.org became a 501c3 non-profit! Vermont often leads the US in incidence of Lyme disease and VTLyme.org is the only organization addressing the impact of Lyme and TBDs on Vermonters.
So, Julie, that brings us up to today. More than anything I am grateful my son is doing well. We are regrouping and figuring out how to move forward from the past decade. Maybe you didn’t realize what an impact your support has had?? Please know I am so grateful - and I truly believe we will prevent what happened to us from happening to other Vermonters.”
So, now here we go, with great discomfort…
I am going to make a shameless plug and ask for your help. Here are three ways that you could help.
1.  Purchase a calendar or two (they make great Christmas gifts).
2.  Make a monetary donation that I can add to the $7,000 already raised.
3.  The most important - word of mouth is huge!!!!  

When 2019 ends, It’d be awesome to make a big cardboard check, like they do on tv, for the amount of $10,000 to present to Vtlyme.org.
What do you think?  Can you help with this last push before the year’s end?

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