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Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  Once you read Stephanie's story, you will see she is the true definition of a Lyme warrior. She has spent ten years battling this illness. She has gone from being in a wheelchair to recently taking unaided steps. She has a warrior spirit that will take her to a full recovery. That's why her blog is called Stephanie's Total Recovery. With all the challenges she’s faced, her fighting spirit keeps her going. Read on to learn about her recycling program to help Lyme patients. What is your Lyme story?
It's long and arduous and fraught with peril. It's uncertain when I was infected but I became severely ill in March 2006 (I recently earned my "Ten Year Lyme badge"). I went from being a fully functional independent adult to being incapacitated with severe system wide neurological and neuromuscular symptoms. It took years, wading through misinformation, controversy, medical research, and countless doctors, to confirm that I did in fact have Central Nervous System Lyme, and now even more years pursuing effective treatment. I've been wheelchair-bound. I've created extensive pre-planning to accommodate and anticipate my every need and to circumvent memory problems. I've been temporarily blind in one eye. I've become completely dependent on those around me, not being able to do simple things, like get the mail or drive. I've been denied insurance. I've been dismissed as a patient. I've spent $250,000+ and counting. I've been stuck and had lines installed more times then I care to recall. It's been a more than full time job, a 24/7 constant monitoring and recalculating. Every step is considered and every effort is in the direction of correction. I've committed all my remaining faculties to creative solutions. You have been on this healing journey for a long time, what is a recent treatment milestone? I've spent many years unable to do physical therapy of any kind. Some recent effective treatment has enabled me not only to get back to therapy but also to maintain my gains for the first time in many years. I now have taken my first unaided steps in years. My gains are slow but steady. I'm so excited, I've been sharing my progress here on YouTube. Eric Parrish (My physical therapist) is awesome. You titled your blog, Stephanie's Total Recovery. What does "total recovery" look like to you? Prior to getting sick I was very active: I worked in construction installing hardwood floors, I frequently traveled all over the country, I went to concerts, I walked in the woods, I went camping, I made furniture, I went dancing, I redecorated constantly, I took good care of my home, and I regularly spent social time with my family and friends. I was limited only by income and time, never by function. Stephanie's Total Recovery is being limited only by my imagination but I will settle for my health and function 100% restored, along with all the added benefits from applying what I've learned through this illness, such as, changing my diet, exercising, and taking care of myself daily. I will keep posting until I get there, updating on my progress and sharing the effective solutions I've found, in the hopes my success can help someone else. You're partnering with the Ticked Off Foundation for the Recycle for Lyme Program. Tell us about it and how people can get involved: Very little of my medical care has been covered by insurance. This has put crushing financial stress on my sole caregiver, my mom. She's leveraged our home, her retirement and her credit to save my life. Throughout my ten year career being a Lyme patient I have been on the hunt for fundraising solutions to offset these costs and enable me to continue to pursue effective treatment. We've done all sorts of programs all of which required people to either directly donate their money or use their money to buy something. I was discouraged that the only way for people to help was to keep handing over their money. I wanted those with limited resources to be able to help, too. My mom says there's always a way, and well, she is right. Exhaustive research revealed an awesome program. After several years of running the program independently, Ticked Off Foundation adopted the program and Recycle for Lyme - a nationwide recycling fundraiser was born. Recycle for Lyme allows people to save lives of Lyme patients in crisis simply by donating the type of trash anyone who bathes creates. This trash is recycled and reused instead of being sent to the landfill or incinerator and all at no cost to the donor. It's free to help. It's free to donate. Save the planet and Lyme patients. It's a serious win win. Sign up at Ticked Off Lyme Foundation: Recycle for Lyme and start collecting today. What is the one thing that you have found most helpful in treatment? One thing? Understanding how to walk that fine line of being persistent and willing to stay the course and listening to my body when it's had enough or something isn't working and needs to be tweaked. That has only come with experience, encouragement from caregivers, and attentiveness to body feedback. Another invaluable thing - Finding the right people - thinking, curious people, to help when others can't operate outside their box of current knowledge. What are you most grateful for in your healing journey? There is a list. I've been exposed to so many things and people I've never known and would have never known. I would have never had the opportunity and would have never taken this path had it not been required of me. I am most grateful to have learned some tremendously valuable life lessons from them. The people I might have expected to help may not be able and the people I never imagined came through in ways I would never expect. It can be delightful to have been wrong. My creativity, my values, my assumptions, and considerations have evolved as a result of the demands of Lyme and its effect on my life. No one survives alone, no Lyme patient heals alone and there is a world full of support for each and every one of us. Is there a particular person who inspires you in the Lyme community? I've developed a deep respect for every Lyme patient and caregivers. Lyme story after Lyme story shows people facing insurmountable odds, debilitating symptoms, and a startling lack of answers to their growing questions. Each person is living and struggling with something few people understand. Whether they are totally recovered or bedridden, their power is in their experience and creativity. With Lyme robbing some or nearly everything that makes us ourselves, it's empowering to know we always have something to offer that Lyme cannot take away. We are all valuable and can all help one another with even minimal actions. The Lyme community continually surprises me with genuine, loving people determined to help. Please share a mantra or quote that inspires you? Here's a couple I keep in view just in case: "Don't wish it was easier, wish you were better. Don't wish for less problems, wish for more skills. Don't wish for less challenges, wish for more wisdom. The major value in life is not what you get. The major value in life is what you become. Success is not to be pursued; it is to be attracted by the person you become." - Jim Rohn "All good things come to those who do paperwork." - Me "Happiness is the joy you feel moving towards your potential." - Shawn Achor
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Most of the links on this post are informational, but a few are affiliate links to help maintain this website. The 2009 documentary Under Our Skin is an incredibly important movie in the Lyme community. The award winning film is essential viewing for chronic Lyme patients and recommended for family and friends to gain a better understanding of the disease and the challenges of treatment. After you've watched Under Our Skin, check out the sequel--Under Our Skin 2: Emergence.  If the first film was enough to make you feel hopeless, the second film will give you a glimmer of hope. The film focuses on two major themes. One, an update on the political issues surrounding Lyme disease, the CDC, and the IDSA. And, two, an update on the patients from the first film. The former continues to be discouraging and maddening, while the later proves uplifting and hopeful. You may remember Jordan Fisher Smith, the park ranger from Under Our Skin. He returns in the second film and makes the following statement, which pretty much sums up the Lyme experience: "The greatest problem that I see Lyme people having is that they are set in a public health setting that is doing its best to deny them treatment. You're going to have to fight for yourself, while feeling awful and not feeling like doing anything." You will see the issues with conflicts of interest within the CDC and the IDSA, which appear to be driven by financial interests. At one point in the story a scientist with promising research is ordered to shut down his program. Shutting down research? What could be the harm in more knowledge? There are clearly things the CDC doesn't want people to prove, because then they will have to admit they were wrong. Jordan Fisher Smith hits the nail on the head: "We believe ourselves to be a democratic society, but the facts are we're getting less and less democratic all the time and the wind is blowing more and more in the direction of the big money." It's horrible to think at the center of all this are very ill people. Throughout the documentary, we check back in with the patients from the first film 7 years later. Many of the patients are faring better physically following long term treatment; however, we see how this illness tears some families apart and brings other families closer together. The patients discuss how the healing happens on all levels: physically, emotionally, mentally, and spiritually. Most importantly they are living proof that you can heal. I loved this moment from Dietrich Klinghardt, MD: "If you have Lyme disease, by my definition, it means also you belong to a tribe here on the planet that is more conscious and more sensitive and also more likely to do something once you recover that will be of benefit for all of us." One patient from the first film is now a patient advocate and developed the website Lyme Less Live More to help people with Lyme. Near the end of the film she says, "You can get better and you will get better," to show despite the political issues surrounding Lyme, there are good doctors out there who can help you toward remission. Unlike the first film this one is a little more difficult to find. You can purchase Under Our Skin 2: Emergence on YouTube, iTunes, or GooglePlay for $3.99. My library (Chicago Public Library) allows you to download it for free on the website Hoopla. Or you can purchase a copy of the DVD on Amazon. I'm hoping someday there is and Under Our Skin 3, in which the CDC and IDSA publicly apologize for all the damage done to people with Lyme disease. But until then, we'll keep raising awareness. "It is reasonable to expect the doctor to recognize that science may not have all the answers to problems of health and healing." - Norman Cousins If you have Lyme disease, reading this graphic novel may be a little like flipping through the pages of your life. Of course, all chronic illness stories are different, but like author, Phil Gerigscott, many of Lyme patients were sick for a long time with unusual symptoms and had a great deal of difficulty getting a diagnosis.  Phil has written his Lyme memoir in comic-form compiled into a graphic novel. It's his story about contracting Lyme, finding a diagnosis (in New Zealand), and beginning treatment. For Phil, these things happen to coincide with marrying his wife, Emma, and starting a life together, which you can imagine makes for some interesting moments.  I've read a lot of personal Lyme stories and publish many stories on this blog, but there's something different about seeing in in pictures. There are many things in this book a Lyme patient will find relatable. At one point, Phil is diagnosed with tendinitis, goes to physical therapy, and buys a bunch of expensive equipment only to still have severe knee pain. After that he begins to spend money on any supplement or treatment that might help. Of course, he also goes through his WebMD phase and believes it could be any number of diagnoses.  Phil wrote this book in real time, so there is a genuineness to his frustration, which may have been lost had he already known his diagnosis. As I learned in the interview I did with Phil, writing this graphic novel was his creative outlet during a time of confusion and struggle. This is a quick and fun read. I was anxious to get to the punch line: How does he finally figure it out? And I kept turning the pages to get there. Phil's artwork is clever and quirky. He manages to find the humor in a very difficult time in his life. It's not an easy thing to do, but it's necessary.  What I learned from this book: 1. Be lighthearted whenever possible. 2. When facing challenges, find a creative outlet. It could be writing, drawing, singing, or even day dreaming. Find some way to channel the pain into something meaningful. 3. Cherish the people who come along for the whole ride, not just the good parts. "Every time you are able to find humor in a difficult situation, you win." - Avinash Wandre Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  Phil is someone makes lemonade out of Lyme. After a confirmed diagnosis of Lyme disease in 2015, he went on to publish the graphic novel, When Life Hands You Lemons, Check for Lymes, available on Etsy. He channeled all of his creative energy into a fun project to share his Lyme story and spread awareness about this misunderstood illness. You can tell from his picture that he has a quirky sense of humor and love of life. Tell us a little about who you are and what you do:
At my core I am a creative person. I find joy in creating art of all kinds whether it be music, comics, poems etc. Lyme has at times taken away my ability to make certain kinds of art, but an important part of creativity is finding clever ways to overcome obstacles, which is what I've tried to use as fuel for inspiration. I had been working in Goshen, Indiana as an elementary art teacher but my wife and I are actually moving to Portland, Oregon in two days where I'll start teaching at a progressive preschool and she will pursue her MFA at the Oregon College of Art and Craft. You tell your Lyme story in the graphic novel, When Life Hands you Lemons, Check for Lymes, what was the process creating the novel like for you? Well before Lyme took a huge dump on me, writing songs on the guitar had been my main creative outlet. Eventually, the pain in my arms forced me to stop playing guitar and I was floundering a bit without a creative endeavor to work on. At the time when I began writing the book I had no idea what was wrong with me, I just started drawing the comics as a way to process, cope, and try to find humor in the chaos. So most of the book is written in real-time, which is probably different than most memoirs. Perhaps what it lacks in retrospective wisdom is made up by its in-the-moment authenticity. What are your views on art, passion, and creativity as they relate to healing? When going through tough times, the most important thing is to have a reason to wake up each morning. For some people it's their kids or jobs, but a big one for me is art. Creating art is so effective as a healing mechanism though because it forces you to process the situation and serves as a safe space to unleash your fears and emotions. On a more public level, our art can also help other people with their own healing journey. Why do you feel it is important to share your story and spread awareness about Lyme disease? Like I said before, sharing stories of tribulations can often help other people not feel so alone with their struggles. But Lyme stories specifically deserve to be heard because it is such a misunderstood disease. I won't get into the political nitty-grittiness of it all, but I will say that there would be less controversy surrounding the disease if there was more awareness and more funding. A woman actually contacted me not too long ago after seeing my book in a local bookstore because she has Lyme disease and didn't know where to look for help. I was able to direct her to a Lyme Literate Medical Doctor, a small step in the journey of Lyme but one that could potentially save her life. To me, that experience in and of itself validated writing this book. What is the one thing that you have found most helpful in treatment? I think like a lot of Lyme patients out there, it's hard to pinpoint exactly what is the most helpful because you're trying so many different things simultaneously. But I have made noticeable progress through a combination of efforts including antibiotics, diet, supplements, and acupuncture. I also never used to take baths, but now I take one almost every day. It calms down my muscles and eases anxiety. It's no cure, but it has become a nice ritual. Do you have any advice for the newly diagnosed? Be your own advocate and seek out education, but also try not to get too overwhelmed with it all. Take a deep breath and take things one day at a time. Also, if you are one of the unlucky ones who is not healed quickly and easily, as my dad would always say, "There's more than one way to skin a cat." As much as I still hate that phrase, it rings true with Lyme. People have found healing through many different avenues, so don't give up hope and always have a plan B. My plan B is bee venom therapy. Though I hope the route I'm on continues to be effective (I'd prefer not to sting myself with bees three days a week for two years), it's empowering to have a backup plan. Who inspires you in the Lyme community? The doctors who put their careers on the line to help patients in a way that they believe is right. I've also been astounded at how supportive other Lyme patients have been. Putting myself out there and interacting with others who have a shared experience was the best thing I could have done. What are you currently working on or what is your next project? The past six months I've been writing for Independent Music News pretty regularly. I also am in the beginning stages of creating a collaborative book with a college friend of mine that I'm pretty excited about. I want to make a plug though about a Lyme-inspired album that I made this past fall called B. burgdorferi. The whole thing was written in six weeks on a 1987 Casio Synthesizer and it covers themes that I didn't really touch on much in my book. So if you can't get enough wacky Lyme art, I'd recommend checking it out. You can also keep up to date with whatever I'm currently working on through my tumblr. Thanks so much for talking with me. "It's not what you look at that matters, it’s what you see." - Henry David Thoreau |
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