As someone I have personally looked up to in my own Lyme Journey, I was eager to interview Sharane and share her story. I have known Sharane for a couple years and she has been such an amazing help to us at Focus On Lyme. When she helps us at our events she is always so positive and a go-getter. Below is her Lyme story and the amazing things she has accomplished in the midst of her fight.
JC: When were you diagnosed with Lyme?
SD: 2013
JC: How did your symptoms begin?
SD: The early symptoms were extreme fatigue, dizziness, intense back muscle pain and migraines. I never connected the dots with all of them. Then, I started having brain fog and other cognitive issues and I knew something was very wrong. Shortly thereafter, the long list of other crazy symptoms came on fast and hard.
JC: Was it tough for you to get diagnosed? What was your process?
SD: Very tough! I can't count how many doctors and specialist I saw before I was diagnosed.
I started with my GP, quickly moved to the big institutional hospitals, and then hit all of the other specialists along the way as I was chasing symptoms (Cardiologist, Neurologists, Neurosurgeons, Hormone Specialists, etc). I easily saw 30 different doctors and specialists before I got a diagnosis.
I kept bringing up Lyme to the doctors because my symptom profile was such a strong match to what I was hearing and reading about in the Lyme community, but that was dismissed time and time again. Like many other Lyme warriors, I did have a specialist along the way test for Lyme, and of course the test came back negative. I didn't know at the time how unreliable those tests are, so Lyme was taken off the list for well over a year before I circled back to it again. By this time, I had a better understanding of the testing and still had to find a doctor that would agree to order it from a specialty lab. Many wouldn't touch the Lyme topic at all so finding the person to order it was a journey in itself.
Ultimately, I got a positive test back and immediately started more specific treatment.
JC: What do you do for work?
SD: I've always been and continue to be in Real Estate both as a Broker and Investor. After my journey with Lyme, I also added Clothing Designer to the list when I launched Peskys.
JC: How did you get the idea for Peskys? (Peskys is Sharane's clothing company that gives a fashionable option for protection against bug bites. Learn more here: https://peskys.com/)
SD: After many years of being extremely ill, I was finally able to take a hike through the woods which was a huge milestone for me. I was thrilled to be out in nature, but the experience wasn't 100% bliss because I was hyper-aware of the beautiful deer that I kept passing. I knew that there were deer, there were ticks, and I really, really didn't want to get another tick-borne infection. Bug sprays that work well are generally very smelly, messy and toxic, and so I went looking for better options. I found insect repellent clothing, but none of it suited my tastes so I thought "what if I created a line that was more like the active wear that I already own and love, BUT it also had the added feature of being insect repellent?" The icing would be if by creating this brand, it would give another platform to raise awareness about tick-borne disease. The idea was just crazy enough that I thought it might work... and Peskys was born.
JC: What is one piece of advice you’d give to a struggling Lyme patient?
SD: Just one? I have a few: ;)
First, find a hopeful, positive vision of your future that you cling to with everything you have. Hope is paramount to healing - so read/listen to inspiring stories of recovery, surround yourself with others that give you faith and hope, and find a medical team that believes wholeheartedly in your capacity to heal.
Second, be your own advocate and trust your gut; it is profoundly wise. I had many twists and turns in my healing process that were driven much in part by listening to myself and trusting my intuition. If something in your treatment plan feels really wrong, it probably is for you.
And lastly, know that there are many ways to healing - what works for one doesn't always work for another. BUT there are some fundamental commonalities that all of us that have recovered share. Those include radical dietary changes to provide the best possible level of nutrition to our bodies and the least amount of inflammation, detoxing like our life depends on it (because it really does!), and working through any old emotional garbage and unnecessary stress that is holding us down as all of that junk literally and scientifically keeps our bodies from performing at their best. The killing of the bugs is important, but all the other pieces are just as important if not more in my opinion.
JC: You are on the Focus On Lyme Committee, and when I see you, you are always so positive whether your Lyme is doing well or not. What is your biggest motivation to stay positive and keep fighting?
SD: Lyme seriously impacted every single area of my life. During the darkest days, which were actually more like years, it stripped me of my career, my social circle, my hobbies, and my sense of self. There was extreme isolation, financial challenges, and all kinds of huge hurdles that had to be overcome. As I have come out the other side, I have essentially rebuilt and continue to build, my life from ground up, and there is an immense sense of gratitude for so many mundane things that I took for granted before. When I hit a grumpy day (we all do it!) , I find it pretty easy to turn it around when I think of where I came from. To have a great night sleep, to eat without pain, to go weeks without an IV or doctor appointment, to be able to work, take a yoga class, go to dinner with a friend... these are all such incredible gifts and blessings that I just never want to take for granted again because there was a long stretch of time when I couldn't have any of those things. I know it all sounds so terribly cliche', but it is 1000% the truth.
JC: What do you feel are your biggest accomplishments since being diagnosed?
SD: Three things:
1) I am incredibly proud of Peskys and all that it stands for. It was a labor of love created from my bed while still ill with the vision of knowing it would be a success if it saved just one life.
2) My favorite hobby in the whole world is skiing, and after 6 years of not being able, I hit the slopes last year and it was one of the greatest moments of my life to feel that mountain under my skis again.
3) I'm not sure if it is an accomplishment, and certainly not my doing, but I am so incredibly grateful to my husband for loving me and standing by me through this journey. Lyme is horribly brutal on significant others, and he has been loyal and steadfast through it all. I'm so incredibly lucky to have him by my side.