In the Lyme-Light (Events Recap)
I’ve been blogging about Lyme disease and taking part in advocacy efforts surrounding this illness since I was first diagnosed in 2012, but it wasn’t until these last two years that I found the opportunity to share my voice, my story, and my love of writing in a truly meaningful way. My passion has aligned with my purpose, and nothing ignites the fire inside of me more than that.
But it hasn’t been an easy road.
Eventually, I’ll return to blogging about writing, books, and life in general, but this is my life at the moment. My life is encompassed by this disease because it’s what I live with day in and day out. It controls my actions—what I’m able to do each day and how much. It controls my future—I can’t plan too far ahead because I never know what will change and when. Sometimes, it even controls my emotions. Which is why I count my victories. They’re small miracles, my little blessings. They’re my reminder to keep moving forward because it all counts towards making a difference as we fight to shed light on the shadows of this disease. So, without further ado, here’s some of what’s been happening in my Lyme world...
Southern Tier Lyme Conference On April 28-30, I traveled with friend and fellow Lyme warrior, Nika, up to Binghamton, NY for the Southern Tier Lyme Support Group's annual Lyme conference. The conference was headlined by esteemed Lyme doctor, Dr. Richard Horowitz, and featured other notable speakers and researchers as well as a vendor exhibit.
I had the pleasure of being a vendor in which I signed and sold copies of The Last Letter--which I'm thrilled to say sold out by noon! But by far the most memorable part of the conference was meeting and speaking with so many Lyme patients, caregivers, and doctors. I'm continuously astonished by how similar our stories are and the strength, resilience, and perseverance by which Lyme patients fight this devastating disease. They truly are my heroes. Many thanks to the Southern Tier Lyme Support Group and their network of volunteers who worked tirelessly to present a fabulous conference! It was an experience I won't forget. Check out the gallery of my personal event pics below:
Lancaster Newspapers On Thursday, May 4 I had the pleasure of sharing my Lyme story with a reporter from Lancaster newspapers in which I discussed the Lyme experience from a patient's perspective, the dangers of this disease, and how education and awareness are vital for early detection, treatment, and prevention.
The reporter asked me if I was angry at the medical community since I was misdiagnosed for so long. I replied that I was disappointed that there's such a lack of education and that Lyme disease is so readily denied and easily dismissed, which causes extreme suffering in patients. If anything, patients feel betrayed by the medical community for denying the serious nature and long-lasting effects of this disease. Unfortunately, most of that didn't make it into the article. But the good news is that the article is pretty accurate as far as facts about Lyme disease and warning about its dangers. I consider that a win. Read the full article from Tuesday, May 9 here: "Exploding tick population could mean record Lyme disease cases in Lancaster County."
Harrisburg Lyme Disease Rally Also on May 9 was a rally on the steps of the Pennsylvania state capitol building regarding House Bill 174 and Senate Bill 100. Hosted by PA Lyme Resource Network in conjunction with LymeActPA, the rally featured speeches by congressmen and moving testimonies from Lyme patients about how this disease is personally and financially devastating. HB174 and SB100 aim to improve the lives of Lyme disease patients by making Lyme treatment both accessible and affordable. Currently, insurance companies deny long-term treatment to Lyme patients despite continued recommendations of long-term care and mounting evidence that long-term treatment helps patients fully recover. While these bills won't force doctors to treat beyond the current thirty-day standard, it will give them the option--ensuring that no doctor is penalized for their treatment plan and no patient is burdened with burgeoning health costs. With Lyme disease on the rise, Pennsylvania is currently number one in the nation for Lyme disease cases, with an estimated 120,000 new cases annually. Only half of those patients will recover with a short-term course of antibiotics. Patients are currently paying tens of thousands of dollars out of pocket for medicine, supplements, and doctors visits that are necessary with continued care. It's a burden that no patient should have to bear. I livestreamed the rally on my Facebook page, Being LymeBrave. You can watch the whole rally and hear some of my thoughts here:
ABC27 Television Interview Tuesday was surreal, I swear. As if the rally and the newspaper article weren't enough, my friend, Nika, and I were approached by a reporter with local news affiliate ABC27 (coincidentally, the same station in which I participated in their Author Spotlight back in March) to share our Lyme disease experiences and why these bills were so important to us as Lyme patients. You can check out the news segments here:
Noon Airing: Rally for PA Lyme Disease Legislation at Capitol Evening Airing: Rally Calls for Fair Insurance Coverage of Lyme Disease Treatments
A special thanks again to Pennsylvania Lyme Resource Network for putting this rally together, to the politicians who continue to stand with Lyme patients and fight for necessary treatment and coverage, and to the brave young warriors who shared moving testimony of their life with Lyme disease.
We're all standing with you.