Most of the links on this post are informational, but a few are affiliate links to help maintain this website. This interview is with Lauren Lovejoy, the President and Founder of the non-profit Lyme Warrior. You may have heard about one of their wonderful campaigns, such as, Kids Smile Boxes, or most recently, Ink to End Lyme. According to the Lyme Warrior website, this is their mission: Lyme Warrior is a 501(c)(3) nonprofit organization fighting to bring awareness and support to the sufferers of the silent, debilitating epidemic of Lyme Disease. Proceeds fund research, awareness campaigns, and impoverished Lyme Warriors. You can donate directly to Lyme Warrior or buy items from their online store. Lauren works tirelessly to empower other Lyme patients to raise awareness and make change. She truly lives up to the title of her organization. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I have no idea where I got Lyme. One day I was driving on a long trip by myself and had my first anxiety attack. Within a month, I was so lightheaded I could not get out of bed and I started seeing doctor after doctor. It took me a year to get diagnosed when I ended up in an LLMD's office by accident. There I was diagnosed and started learning all about the disease that had changed my life. You are the President and Founder of Lyme Warrior. Tell us a little about the organization: Lyme Warrior was created out of my frustration at being home bound for years. After I finally got diagnosed and found that my story was common, I felt the extreme need to raise awareness so others wouldn't have to go through what I did. I reached out to others who wanted to change this disease and together we started creating products and projects we hoped would bring awareness while raising funding for Lyme research. We are now a small team of volunteers still in our first year. Our focus is to fund different types of research while raising awareness. We became an official nonprofit just a few weeks ago, but have big plans and ideas for how to make things change. Lyme Warrior created the Ink to End Lyme campaign. Can you tell us about it. What is it? Where did the idea come from? How did you become connected with tattoo artists across the country? Tattoos have been an interest of mine for a long time. I had work done by many amazing artists some of whom I became friends with over the years. I reached out to a few to see if they would be interested in donating a day of tattooing to help fund research for Lyme Disease and they of course said they would love to help. With their help, many other shops wanted to help as well. We asked each shop to do anything they wanted for a day to raise awareness. Some shops offered flash tattoos, some donated gift certificates, and some just donated to the cause. With such big names helping, it has been getting a lot of attention in the tattoo world.
How is the campaign going so far? Do you plan to make it an annual event? Because of the success, we will definitely be having a second year. With big name artists like Kelly Doty, Timmy B, Jessie Smith, and Geary Morrill we have attracted a lot of attention in the tattoo world and hope to do even more next year. What do you want people to know about Lyme disease? I just want people to be educated about what Lyme really is--the extent to how disabling and deadly it can be, the issues with correct testing, and the adversity patients have to go through just to get a correct diagnosis. If people knew what Lyme disease was really like the funding and change would come naturally. Like so many things, it's ignorance that creates the challenge. Do you have any advice for the newly diagnosed? For those newly diagnosed, I highly recommend finding support. If that's friends that will stick around, support groups, or a more stable living situation. Find the stability that will give you strength through the journey. Do you have a role model in the Lyme community? Many. I admire anyone battling Lyme who continues to get up every day and keep trying. Please share a mantra or quote that inspires you: "Vulnerability is the birthplace of innovation, creativity and change" - Brene Brown Follow Lyme Warrior: Website: www.lymewarrior.us Twitter: @LymeWarriorUS Instagram: @lymewarriorus Facebook: lymewarriorus "When it comes to what really matters - what makes us laugh and cry, grieve and yearn, delight and rejoice - we share the same heart space. We just fill it with different things." - Oprah Winfrey
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Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Anastiscia Chantler-Lang is a fierce Lyme advocate. In reading her story you will see how she went to hell and back to be diagnosed and treated. She traveled the world and had many amazing experiences, until she contracted Lyme and everything changed. One of Anistiscia's biggest passions is her art, which is featured throughout the interview and can be see at Art Obsessions Gallery in Lake Tahoe, Nevada. Tell us a little about who you are and what you do: Who was I before I was diagnosed with Lyme? I was the creative, bubbly, physically fit girl—an amateur body builder, with the wide smile and big heart, who had a lot to contribute to society. I was a Mental Health Corporate Vocational Counselor with a Masters in Psychology—giving direction, training and hope to those who lost their jobs, a volunteer for youth groups with mental and physical disabilities and drug addictions—while working in government assisted day programs, a corporate English Teacher in Japan and Cambodia, with a fashion design business on the side, and a handbag designer in Rochester, New York. I dedicated time to charities like Habitat for Humanity and women's cancer programs. Now I am a Lyme disease survivor and warrior who currently teaches corporate English on the computer to South Korean students part-time, and an artist who does a variation of artwork that can be seen in Art Obsessions Gallery. I am currently studying to become a certified holistic nutritionist and certified holistic health practitioner with specialty in the lymphatic system. My goal is to help those with Lyme disease and to create awareness though my art and my future practitioner vocation. I am newly married for the first time to a loving soul I met at my Lyme treatment and I am currently have relocated from Toronto, Canada to Lake Tahoe, Nevada. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I contracted Lyme in 2008, in upstate New York, bulls-eye rash and all. I was violently ill for 2 months, thinking I had the flu and the rash like bruise was as a result of me dropping a free weight on my leg. After 2 months all the symptoms calmed down. Two weeks later I got a tetanus vaccine (there is a lot of literature on the relationship between vaccines/trauma/Lyme trigger) and 8 hours later all hell broke loose and life as I knew it, violently ended. I was mislabeled and misdiagnosed for 6 years. My life took a very different turn and a heavy hit when I contracted Lyme disease. A downward spiral of over 6 years of misdiagnosis and costly incorrect treatment. I was so violently ill. Every single symptom you could imagine humanly possible I had and relentlessly, there was no reprieve, including partial paralysis on the left side, constant vomiting, constant head and brain swelling, severe dizziness, seizures, the list was endless effecting every system and function of the body. I almost passed away on 3 occasions between 2008 and 2011. I experienced the loss of relationships, finances, ambitious, and dreams. I truly believed I was dying and going to die. Due to out of pocket medical bills my funds were depleting and no doctor could understand what was wrong with me or how to help. I lost my job, my fiancé, my home, and my only remaining relative, my mother passed away. I had been rejected twice from disability and had to hire a pro bono lawyer, as I was going to tribunal. I ended up in a car accident, which added 2 more years of an additional therapy treatment in 2011. By this time the property I owned in Canada, a condo had slipped out from under me, because I could no longer make payments. I was transient moving from friend's house to friend's house, on occasion my car. In this mess I was still so violently ill on a daily basis—in and out of emergency rooms. At complete rock bottom, by the grace of God I was "adopted" by a family whose daughter was seeing the same Naturopath as myself. A family I did not know, nor did they know me, but took me in anyway. Finally, someone at social services listened to me and could clearly see my need, and I was placed on welfare. A complete blessing and blow at the same time to myself worth and all that I had worked for. Again, another blessing came into play. I got money from the car accident, had my disability tribunal by phone due to my physical circumstances, and was granted monies. These two processes took 5 years to come to fruition. I immediately began to research and hope for treatment in the US, as unfortunately, except for a few brave Canadian doctors, Canada in general does not recognize, nor appropriately treat Lyme disease. By the time I reached a Lyme treatment clinic in Reno, Nevada in 2014, I had gone into organ failure in 2 organs, and near failure in 2 other organs. It was there, I hung on through a roller coaster journey of 5 months of intensely painful, yet lifesaving treatment. It was also there, I met my now husband, and now we fight together. Am I Lyme free? No. Am I without symptoms? No. Am I debt free? No. Am I alive and functional right now? Yes. Am I hopeful for myself and others that we are creating a voice and new treatments are progressing? YES! How has your art helped you cope with Lyme disease? My art has helped me cope, because it is a passion. No matter how big or small if something is a passion you can get lost in it. It can take you away to another realm. It gives me purpose and feelings of joy instead of pain. It gives me self worth again. Every person with Lyme disease has something to give. No matter how big or how small you can make a difference. Have you ever smiled at someone or given a complement to someone who looks like they need it, as much as you do? Well what do you think you just did? Brightened someone’s day. That's what my art does for me. It helps me to brighten the moments. My hope is to brighten other people’s moments with it, as well. What was your lowest point and how did you find your way out of it? When I hit rock bottom, I had already lost my work, my lifestyle, my fiancé, my mother, and so called friends. Then, I ran out of all possible funds, was still violently sick, lost my home and was homeless, full of intense fear and barely even able to fight or fend for myself, I lost my self worth as a person. I had been stripped on every level. Physically, mentally, emotionally, spiritually. It felt like giving up. How did I find my way out? 98% wanted to die, but 2%, that small little bit of rational brain could not accept this hell would all be for nothing. One part of me could not and would not accept this as life, even though it was happening and had been for 6 years. To that one piece of me this did not make sense, since my old life had been all about productivity and meaning. There was an ounce of extremely potent will power to have this not be for nothing. I had to fight the neurological crap I was dealing with and had nothing left to lose but me, so all I could think was simply, "you are ok." I would repeat it out loud, sometimes for hours on end, "you are okay"--over and over. It was crazy stuff. For me it was refusing to give up, even though most of me wanted to and all circumstances were taunting me to. Brain trickery maybe, and internal faith, in what at the time I didn’t know, it was just there. What is the one thing that you have found most helpful in treatment? Everyone responds and reacts with Lyme differently, treatment wise as well, as we all know. Nothing is cookie cutter, nothing about this disease is what orthodox medicine wants you to believe. In my case it started with the Lyme clinic. In severe and chronic cases like mine it was not a cure, but it was a lifesaver. 5 months saved my life. I also found that if there is mold and mycotoxins in the body, that can hinder or slow progress. I am currently working on that. I have my best results with UVB ozone IVs on a bi weekly basis and Argentyn 23 hydrosol silver sprayed up the nose regularly. I also take several strong Doterra oils (in a regime), and I am working with a stricter protocol on that. Of course detox as well, sauna and colema. I can't say I am a saint when it comes to a strict diet, but it's all organic. What do you want people to know about Lyme disease? It is only recently that Lyme disease has become somewhat heard of due to celebrities sharing their stories publicly. Treatment for Lyme disease is extremely complex and requires a combination of modalities over a period of 1 to 3 years or more, with lifelong maintenance protocols to regain a life back and keep it. Anyone who knows about the devastating disease knows for some people all the treatment is out of pocket and runs in anywhere from conservatively fifty thousand up to hundreds of thousands. If Lyme disease is not diagnosed early, the Lyme spirochetes will spread through the body, borrow into the organs and tissues, and create detrimental neurological problems, nervous system problems, joint and muscle deterioration, endocrine dysfunction, heart and circulation issues to name a few. It is a painful, often slow tortuous full body systems attack and a relentless symptomology hell. If left untreated it will morph into serious autoimmune diseases and even death. Due to very limited options in other countries, people from all over the world often end up in the United States for costly treatments. The disease does not chose who it wishes to attack. Everyone is up for grabs. There are many articles on the methods and growing rate of infection in the human population. An epidemic cannot keep silent. Regardless of the politics and profiteering behind this disease it has become the fastest growing infectious bacterial disease to date, and not just in the United States. Governments, politicians, the medical establishments need to stop ignoring a huge threat. Elizabeth May of the Canadian Green Party is an example of one such listener. She got the Canadian government to pass a bill on Lyme disease. It calls on the government to call a conference of provincial and territorial ministers, medical experts and representatives of patient groups to develop a comprehensive Lyme disease strategy. The strategy would include a national program to track rates of infections, and establish guidelines for preventing infections, and diagnosing and treating them when they occur. Well, it's a start. Speaking for myself, I have attempted to contact many Lyme organizations, media, and local government representatives. I can count on one hand the number of people who responded back. What happens when a Senator gets Lyme, when a President gets Lyme, when an accomplished medical doctor gets Lyme? This has already happened. So how many more souls have to get it before it matters? Who is next? Get the real facts, before it gets you. I also want people to know, those and their families who have been afflicted by Lyme, are the strongest, most determined, and most courageous individuals I have ever seen, who through this journey display exemplary character on so many levels. If you could take away one symptom, which symptom would you take away and why? I think that is a very relevant question, since symptomolgy or lack of, is so much a part of the definition of the quality of life--the standard of health, comfort, and happiness experienced by a person. The things that are needed for a good quality of life, right? I know many Lyme patients have the majority of issues neurologically. I completely understand that. I was so there. When it comes to Lyme what would you take away? All of it. This is what those unaffected by Lyme need to understand the level of havoc this superbug does to the human body. In all seriousness one simply has to recall the movie Aliens. In direct answer to the question, for me it would be the constant body joint and bone pain and inflammation, because it's a matter of mobility. What are you most grateful for in your healing journey? In the beginning when Lyme came along and threw me into a violent whirlwind of trauma on all levels, and I had not the slightest idea what was happening to me, I was grateful for my mother’s very simple words "You will be OK." Because she knew me the best, I believed her words. I made my brain believe those words, because I wasn't ready for anything else as an end result. I then became grateful for the little mustard seed of will power and determination I had to overcome the relentless crap. I was so grateful for the circumstances that did keep manifesting and the timing of them, which was of a divine power or energy. For the very few people over 8 years who did not give up on me through emotional encouragement, even though they themselves didn't know what the hell was going on, including the family who took me in. For the out of the box doctors who were a part of where I am today. For the person I have become emotionally and spiritually and intellectually now. For my now husband who at my most broken time and literally near death, saw through everything and saw a person worthy of joining the fight with. For the individual people with Lyme who don't give up on this serious global situation. Do you have a role model in the Lyme community? I really don't have a specific role model. There are so many complexities with the disease itself and how it reacts with people and each person ends up in such different circumstances. A friend of mine once said, "This is a silent disease for the rich." In this political, bureaucratic present society I would tend to agree. Just having some contact with various Lyme groups I would say I have an extreme amount of respect for all those I have met and those I have not, but know they are out there and what they go through. I will be very blunt here and say, I have attempted to reach out to many Lyme organizations as well as mainstream media and have sadly gotten very little if any acknowledgment back regarding this critical pandemic (I call it that when you start to really dig into the research and numbers). One organization, Hand in Hand for Lyme Disease, Inc., a nonprofit that helps Lyme persons of all ages in crisis, is run by Laura Ann Watt-Closser. She makes a fantastic role model. Why? Because she experiences the ugliness of this disease day in and day out, but her will, determination, and strength fuel her to reach out and take steps on the frontline with people who need help and to the politicians and government and corporate sectors who could make a difference. Please share a mantra or quote that inspires you: As an artist I say: "What the eyes can see, the heart can feel." A little voice inside me would always repeat: "A little mustard seed of faith goes a long way." And, "You are Ok." Never drop your mustard seed. You are worthy, so believe it. A friend recently said to me: "You must always fight, and keep fighting, and sometimes the fight never stops until the end. And therein is your worth." My mother said this to me and I stuck it in my head and it keeps me going to this day: "You will always have a million chances to give up, so why do it right now?" - Pamela Joy Perry "Everyone you will ever meet knows something you don't." - Bill Nye Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Robin Fiorese is a champion for her husband, Tony, who was finally diagnosed with Lyme disease after a misdiagnosis of ALS. In this installment of The Lyme Interview, she shares his story with the goal of spreading awareness of Lyme Disease and the many ways it imitates other illnesses. This is a family that will inspire you to never give up, traveling all the way form British Columbia to Florida for treatment. They went from hopelessness to hope. This is a picture of Tony taking a break from treatment to visit Epcot. Tell us a little about who you are and what you do:
I'm in my late 40's, I don't have human children, but I have dogs. I have been involved in a volunteer parrot rescue for the last 16 years, and have a few adopted birds. I enjoy being outside and we have recently moved from our 2.5 acres in the City of Surrey to a property 3 hours away in the city of Peachland in the sunny Okanagan, British Columbia, with a lake view. Needing to downsize to pay for treatment and for a drier climate. Tony is a 50 year old craftsman of all trades, working in the movie industry building sets, as well as, a volunteer Fireman and presently a Paramedic, he is also an outdoorsman into hunting, fishing and outdoor sports. Your husband was diagnosed with Lyme after a misdiagnosis of ALS. Please share your story: Tony was in the best shape of his life and working out 6 days a week, but while at work, one of his patients adjusted herself on the cot as she was being carried out of her residence, and Tony, along with his partner, went to stop her from falling and he ripped his right rotator cuff. He started physical therapy and was only getting weaker, losing all his muscle mass on the entire right side of his body, including his leg. He was then sent to a neurologist, and then a second neurologist, and they both said Tony had ALS, which as they said is "a death sentence." They said they had a drug they wanted Tony to take, but he refused and started to do his own research. He found that ALS and Lyme mirror each other very closely. Tony being a hunter thought it was quite possible he was bitten by a tick. We don't know when, it could've been 20 years ago. It was not until he had the trauma to his body (ripped rotator cuff) that it started to show its ugly face. Then we found a Lyme Literate Natropathic Doctor about an hour from where we lived. Tony's blood was sent off to the United States for testing. He had enough markers to diagnose Lyme disease, so the year-long treatment started. Things were getting worse but we held onto hope that at some point he would turn the corner. Once all the so-called natural remedies we tried didn't work the doctor wanted to use heavy, high doses of IV antibiotics. We left and started treatment with a Chinese Medicine clinic only 5 minutes from our home for 8-9 months, again we were holding onto hope... What was your family's lowest point and how did you find your way out of it? After realizing the Chinese remedies were also not working and feeling we were at a dead end was probably the lowest point. More research on the internet brought Tony to the current treatment in Florida where he has been for the last 5 months. What is the one thing your husband has found most helpful in treatment? Finding a doctor that knows what he is talking about and knows the proper treatment for each individual case of Lyme. What do you want people to know about Lyme disease? It can can happen to anyone. Who hasn't been bit by a mosquito? Or flea, which are also carriers. If you could take away one symptom, which symptom would you take away and why? The deterioration of the myelin sheaths on the nerves. This has taken away Tony's ability to walk and do things with his arms and fingers. He had bad breathing issues as well, but that has been Improving. Finish the following statement "I wish…": There was funding available and the government would recognize that Lyme is an epidemic and needs to be addressed. Please share a mantra or quote that inspires Everything happens for a reason. "Take your victories, whatever they may be, cherish them, use them, but don’t settle for them." - Mia Hamm Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Lori Dennis is the definition of a Mama Bear in the Lyme community. She is a fierce advocate for better treatment of Lyme patients and recognition of chronic Lyme disease by the CDC and IDSA. Her son was diagnosed with Lyme, and as a mother she fought with him for an accurate diagnosis and satisfactory treatment. As an intelligent and thoughtful person, the bureaucracy surrounding Lyme disease made her intensely angry and frustrated. She channeled her feelings into her book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease, which is available on Amazon. Follow Lori on her Facebook page and visit her website. Enjoy the interview. I especially like what she has to say about Googling symptoms and the quote she shares. Tell us a little about who you are and what you do:
I am a Registered Psychotherapist in private practice in Toronto. Your son has Lyme disease. Tell us about his Lyme story, how do you think he contracted Lyme? I was forced to plunge myself into the world of Lyme four years ago when my adult son, who lives and works in New York City, became acutely ill. I could see for four years prior to that time, in his last semester at Brown University in Providence Rhode Island, that he was just not himself. He began to exhibit symptoms that were outsized - he lost a lot of his hair quickly at the age of 22 and he was experiencing anxiety that was not easy to explain. His light seemed dim. It was not until one week after he had a flu shot in the fall of 2012, that he fell acutely ill. Like most chronic Lyme sufferers, we don't know how or when he contracted Lyme. It could have been a tick bite at overnight camp in northern Ontario where he spent his summers from ages 12-17. Or it could have been at Brown University where Lyme is also endemic. He never saw the bullseye. He never saw the tick that apparently bit him, if in fact that is how it was actually transmitted. We just don't know. After he got a flu shot he fell ill and the symptoms just cascaded from that point on. How long did it take him to get a diagnosis? It took 18 months and 20 medical specialists in Manhattan to completely miss his diagnosis altogether--I remain outraged at this fact to this day. I obviously came to learn that most chronic Lyme sufferers have experienced the same thing, give or take a detail or two. This is honestly what has driven me to write Lyme Madness. I have been propelled by my outrage at the medical system. The lack of interest, the denial, the neglect, the invalidation that people are experiencing worldwide is unconscionable to me. At my son's lowest and most desperate place in May 2014, my intuition kicked in and I Googled Lyme (I certainly wish that my intuition had kicked in sooner). Despite what doctors have to say about Google, I feel blessed to have had this resource. It was the only way we could have figured it out as none of these hot shot specialists even had it on their radar. So, if this hurts their egos or causes them to mock us, so be it. I can live with that. Until they begin to do their job properly, we are left to be our own diagnosticians, microbiologists, immunologists, rheumatologists, neurologists, infectious disease specialists, and so on. As Kris Newby of Under Our Skin fame told me when I interviewed her, chronic Lyme is a "do it yourself" disease. Rings true. Once I knew in my heart that it was Lyme he was suffering from, I Googled (once again) "Lyme specialists" and learned for the first time that there was such a thing as a Lyme Literate MD. We were fortunate to get in to see one in NYC very quickly--on a cancellation. And so our medical odyssey with chronic Lyme disease began. I look back to that watershed moment and think about how little we understood then. How we had no idea how long and arduous this road would be. How I would be compelled to write a book on the subject. How this disease is so much more than ticks and bulls-eye rashes as the media would have us believe. As you stated, you wrote a book entitled Lyme Madness. What compelled you to write the book? Lyme Madness was derived from my sense of chronic outrage, confusion, isolation, worry and overwhelm. I was busy reading about chronic Lyme disease at every moment I could find. And the rabbit hole just got deeper and deeper, darker and darker. No one in my world understood or had the capacity to listen to everything I was learning. So I needed to find an outlet for all of this information that I was gathering and the madness of it all. Thus Lyme Madness was born. I am hoping that my book will help others be able to navigate this journey a little bit more easily, and that it will help them to feel a little bit less isolated and "crazy" by their experience which is being negated by so many. I hope that their loved ones will think twice before rolling their eyes or offering ridiculous platitudes. I hope that some doctors (including psychiatrists) will wake up and join us in this nightmare called chronic Lyme. What do you want people to know about Lyme disease? Last spring, I wrote a post on my Lyme Madness Facebook page that read: "Lyme sufferers are victimized in five different ways: by the disease itself; by doctors who turn their backs; by loved ones who roll their eyes and walk away; by insurance companies who refuse to provide coverage; and by the CDC and IDSA who say that 'chronic Lyme disease does not exist.'" This post had 104,000 views and more than 1,000 shares. What this tells us is that it hit a nerve far and wide. I’ve since been told that Lyme sufferers are also victimized by schools that require ongoing paperwork for academic accommodations - something I hadn't thought about as my son is an adult. When I read your post on your hospital stay, I realized, not for the first time, that hospitals victimize Lyme sufferers too, of course, by forcing them to explain and justify their illness at each and every emergency visit, clouding sufferers with a sense of shame, as if they are fabricating their experience. Do you have any advice for the newly diagnosed? What I want Lyme sufferers to know is that they are not alone. That there are millions suffering, and few listening. But that they can get support and validation from the other chronic Lyme sufferers all over the world. I have spoken to people in the Netherlands, in the UK, in Australia, in Japan, in Scotland, in Ireland, in Germany, across Canada, and the US. It is the very same story world-over. The medical powers that be insist that chronic Lyme disease is "difficult to catch, easy to diagnose, and easy to treat." Nothing could be further from the truth. I want Lyme sufferers to know that we are making strides. With every book, every blog, every protest, every petition, we are being heard. But it will take time to steer this ship in the right direction. In the meantime, we all have to find "workarounds"--doctors and protocols that are outside of the box of conventional medicine. I believe that chronic Lyme is now at the forefront of a paradigm shift in medicine. In time, we will continue to move far more toward homeopathic, naturopathic and energy medicine as allopathic medicine has rendered itself ineffectual for chronic Lyme sufferers. Please share a quote or mantra that inspires you: The quote that keeps me going and helps me to gather more and more courage as I move toward publishing this book is: "All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident." - Arthur Schopenhauer "Hope will never be silent." - Harvey Milk Most of the links on this post are informational, but a few are affiliate links to help maintain this website. One of my guilty pleasures is celebrity gossip. I know it's a waste of time, but I just can't help myself. Sitting down with my US Weekly is the perfect way to check out. When I’m reading about Gwen Stefani and Blake Shelton, I forget about any worries from the day, if only for a few minutes. One of my favorite columns in US Weekly is "25 Things You Didn't Know About Me" Sometimes they are boring and braggy, but sometimes it gives you a glimpse into the real person behind the persona, warts and all. I know I'm not a celebrity, but I when I'm reading that column I can't help but wonder What would I say? What are the things about me only a few people know? So, here's my attempt to let you in on some fun facts about me. 25 Things You Didn't Know About Me: 1. I didn't think I liked dogs, until my husband convinced me to get a puppy 8 years ago. Now I'm obsessed with my Jack Russell mix, Scooter. 2. I collect magnets from every place I've traveled, but don't like putting magnets on my refrigerator. 3. I'm a Francophile and love everything Paris, France, & Eiffel Tower. 4. I'm a published haiku poet. 5. I love clothes, but have very little fashion sense. 6. Although I have no near future plans to have kids I love picking out baby names, most of which are criticized by my friends and family. 7. I have nine piercings in my ears. 8. I have one tattoo of my name in Irish, "Ciarrai," but I want four more: something to symbolize overcoming adversity, my dog’s paw print (see #1), The Little Prince (see #2), and a humpback whale (see #9). Update: I recently got a lotus tattooed on my arm. 9. I love large animals, especially whales and dinosaurs. 10. I'm claustrophobic and it manifests in MRIs, planes, and small cars. 11. Shark Tank is my current favorite TV show. I also never miss an episode of Veep, Crazy Ex-Girlfriend, or Homeland. 12. My favorite movie is My Best Friend's Wedding, but there are many close runner ups: The Lion King, LOTR, Jurassic Park (see #9). 13. I am very talented at the "claw machine" and can win you anything you want. 14. The best gift I ever got was a heated blanket from my husband. I use it every single day, even in the summer. 15. I am drawn to water bottles and travel coffee mugs and buy way more than I could ever use. 16. My favorite book is I Know This Much Is True by Wally Lamb. It is 928 pages, so I've only read it once. 17. I've been told I look like Mayim Bialik, Helen Hunt, Celine Dion, and Ana Gasteyer. 18. My top 3 concerts are: Kelly Clarkson, Paul McCartney, and Billy Joel. Spice Girls is #4. 19. I'm pretty good at impressions of Saturday Night Live characters, but not on cue, only organically, so don't ask me. 20. I'm distantly related to both P.T. Barnum and Isaac Newton. 21. I'm hoping for a Squatty Potty for Christmas. 22. I'm born on Flag Day and like to make a big deal about a holiday no one celebrates. 23. I have an official 'Bucket List' that has 101 items on it. So far I've accomplished 22 items. Update I am up to 32 items. 24. My favorite flower is blue hydrangea. 25. The top 3 celebrities I would like to meet are Oprah Winfrey, Hillary Clinton, and Lin-Manuel Miranda. What's a fun fact about you? "Always go with your passions. Never ask yourself if it's realistic or not." - Deepak Chopra 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 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 Most of the links on this post are informational, but a few are affiliate links to help maintain this website. When you visit Victoria's blog, Lemons 'N Lyme, you will find it hard to believe she's only in her mid-twenties. She's already created over a hundred healthy recipes and she's an accomplished personal trainer. All this while coping with Lyme disease. I can't wait to try some of her recipes, most of which are plant based. It is apparent through her answers that even though she struggles with physical fatigue her spirit remains light and vibrant. Enjoy Victoria's interview: Tell us a little about your blog and who you are: Well, my name is Victoria. I'm 25 and I live in Santa Fe, NM. I run a blog called Lemons 'N Lyme which combines my journey with Lyme disease and my passion for food. I not only share my experience with Lyme and the treatments I am doing, but I also share lots of recipes that fit a restricted, anti-inflammatory Lyme diet. I love to cook and bake and although I've had to alter my diet due to Lyme, it's been a lot of fun to create and share recipes that fit that diet. What is your Lyme story? I grew up in Washington D.C. and we had a river house in Virginia. I spent my summers growing up pretty much rolling around in the grass 24/7 at our river house. I remember pulling ticks off of myself every weekend in the summers, but we didn't know about Lyme disease back then. I routinely got strep, dealt with eczema, and had severe allergies and headaches as a child. I had plenty of tests done, including CT scans of my brain due to the severe headaches. In high school I began developing severe digestive issues and would get sinus infections 1-2 times year. I began getting sicker, with severe fatigue and digestive issues, horrendous allergies, and constant injuries as a high school athlete. I figured it must be normal since all my tests were fine and the doctors said nothing was wrong. I knew deep down something was wrong though, I felt miserable and started to develop anxiety and depression. I first experienced insomnia my freshman year in college and that was not fun. Throughout this time frame, I was diagnosed with parasites on a few occasions. Treating them helped slightly for a bit but the effects never lasted. Then I was diagnosed with Hashimoto's, an autoimmune condition that causes hypothyroidism. Finally, an answer. But treating my thyroid didn't help my symptoms at all. I was still tired and my stomach always hurt. Mid-way through college (4-years ago), I became very ill. I got food poisoning, but never recovered. My college health center told me it was mono even though my mono test was negative. I had almost every Lyme symptom in the book and I have no idea how I managed to finish that semester. So, I flew back home over spring break to see my functional medicine doctor who immediately recognized it as Lyme, started my on doxycycline, and told me to find an LLMD. And that is exactly what I did. I treated for 2 years with my first LLMD using oral and IV antibiotics, some herbs, and addressing mold and heavy metals. I was able to graduate college and then moved to Santa Fe where my parents had retired. I've found an amazing doctor here who I have been treating with for the past 1.5 years. I use a variety of holistic treatment modalities now which range from diet, detoxing, alternative IV's, supplements, and more. I see on your blog you practice yoga. What are the benefits you have found with yoga, specifically related to Lyme? I'm certified as a personal trainer and have always been active. Getting sick with Lyme has been quite a challenge since I can't exercise the way I used to and release my stress and anxiety in that manner. I've found that even though I'm sick, finding small ways to move my body is still very beneficial. Movement is so important for your muscles, bones, cardiovascular system, joints, and even your lymphatic system (which helps move toxins out of your body). Yoga has been gentle enough on my body but still allows me to reap the benefits of movement. Since I spend most of my days in bed not moving, my muscles and joints can get tight which creates pain. Yoga allows me to stretch everything out without overdoing it. I love doing twists because they help me detoxify, which is so important if you are treating Lyme. You also develop and post many recipes. What is your favorite recipe? Any dessert would be my favorite recipe. I can't go to bed at night without dessert, but I'm a health nut, too, so I don't want to eat any of the sugar-laden crap. Even if it is just a bowl of granola, I need dessert. Actually, granola is my favorite food. So maybe my favorite recipe would have to be my Gluten-Free Banana Bread Granola. What is your most popular recipe? My most popular recipe is my Chocolate Avocado Muffins. These are super delicious. I'm a plant-based eater now, so I'd like to recreate this recipe and make it fully vegan. Right now the recipe contains eggs. What is your easiest recipe? Probably any of my smoothie recipes, I mean how much easier can it get than sticking 5 things in a blender and turning it on? My Roasted Cauliflower and Carrot Soup is also super easy and super delicious. What was your lowest point and how did you find your way out of it? My lowest point was probably 2 years into being ill. I knew what I had but I wasn't getting better. I had a picc line in my arm with infusions 2 time a day. I was up until 5am many nights due to having 2-3 panic attacks in one night. I was trying to finish my college education, felt as sick as I had when I first got sick, and my life completely revolved around timing all my infusions, medications, supplements, and meals. I wanted to finish school so badly and not have to drop out in my last semester, but I felt so horrible it was such a challenge. I was scared and lost. I found my way out of it by just continuing to press forward. I knew there were answers and I was going to find them. I began to connect more with others who had Lyme via social media and that really helped. I had people to talk to who understand what I was going through, who would support me, and who kept offering up suggestions for helping me find the right treatment. Unfortunately, I've been really sick again lately, but I'm able to get through it "easier" now. I truly think that finding others who can relate to you and understand you is very important. I've made a lot of friends via social media, who I'm able to talk to on the bad days. I also consistently try to remind myself of the accomplishments I've made so far and try not to compare my journey with anyone else's because we are all different. Finding routine and taking care of myself the best I can when I'm really low is important and taking moments in the day to do some deep breathing, stretching, or manifesting also helps a lot. What is the one thing that you have found most helpful in treatment? I'm assuming you want to know what treatment has been the most helpful but I'm going to answer a little different. The thing I've found most helpful in treatment is listening to my body. Our bodies are amazing, they are smart and know what they want. They do want to heal and they are fully capable of it. I still sometimes struggle with this but I've learned it's very important to listen to my body. My doctor can say XYZ is what I need but he isn't me and he isn't sick and he doesn't know how my body is feeling. If something doesn't feel right, I'm not going to do it. If a treatment begins to feel off or wrong then I'm going to stop. If I'm being drawn to some absurd sounding treatment, I'm going to give it a try. I truly believe our bodies know what works for us, we just have to listen. Do you have any advice for the newly diagnosed? Find a great doctor who knows about Lyme and knows what they are talking about. And make sure it is someone you feel comfortable with. If a doctor is supposedly the top doctor in your state, but you don't connect with them well, then don't be afraid to switch doctors. Again, our bodies and our intuition know best, so listen to that. Lyme is a very complicated illness (because it encompasses so much more than just the Lyme bacteria), so you really need someone who understands that or a team of people willing to work together who understand different aspects of Lyme. Also, immediately cut out the junk food, educate yourself, and begin instilling healing practices into your daily life (anything from detox baths, to healthy cooking, to meditation). This disease is a life changer, so be prepared for that, but it's a big, important lesson, too. You got sick for a reason, you are here to learn, it's not the end, I promise. Who inspires you in the Lyme community? Every other person with Lyme. I'm inspired daily by the battle that everyone in the chronic illness community fights, for their willingness to keep going, their strength to battle all of the symptoms, and just for being them. Everyone in this community is who keeps me going and reminds me that I can do this, one baby step at a time. Please share a mantra or quote that inspires you? Maybe it's cheesy or cliche but I have this quote as my desktop on my computer and it keeps me going, "A smooth sea never made a skilled sailor." We all learn from our mistakes and hardships and, dang, am I learning a lot. "Life doesn't get easier or more forgiving; we get stronger and more resilient." - Steve Maraboli |
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