Life once stressed me out. I was anxious to do my best, work too much, over exercise, and lose sleep over silly things. Yet something magical happened when I became sick. As my energy depleted, I lost the capacity for stress. Somehow my body knew to conserve its energy for what truly mattered. Things that used to drive me bonkers suddenly rolled off my back. I had no choice but to prioritize. I couldn't do it all. At the end of each day, I did all that I could and that was, for once, enough.
Two years ago, I picked out a puppy for my birthday. I knew he was the one from the moment I saw him. He was still and content and quite unlike all the other barking, jumping, rowdy dogs in the shelter. He was silly and sleepy. He got along easily with everyone and everything. He loved his new life as a farm dog and showed his appreciation every single day. I was at my worst when I brought that puppy home. I was incredibly ill and required lots of rest every day. Thankfully, Harvey could sleep for days. He slept so much there were times when I wondered if Harvey too had Lyme Disease.
An incredibly sad turn of events happened last week that ripped my therapy dog away from me.
I heard a gun shot and ran to find my Harvey lying in the grass peaceful and still. There was no reason for anyone to take his life. He wasn't anywhere he wasn't supposed to be and he wasn't doing anything wrong. I will never comprehend this senseless act. I will never understand it.
All of a sudden, I have the energy to feel again, and I am angry, broken, confused, and sad. I have the energy to stay up all night, drown my sorrows in whiskey, and feel so much more than I have in years. It hurts my heart and boggles my mind.
Harvey spent over two years nursing me back to health, and thanks to him, I am almost there.
My body is mending and feeling whole again, but I don't know how to heal my heart without Harvey. I am doing my best to keep moving and working the emotions out of my body through daily walks and many tears. When I am still, this loss covers me like a weighted blanket that I can't get out from. I can’t imagine making peace with such a cruel act that resulted in an unnecessary loss.
I have spent the majority of the past two years snuggling that dog. He took his role seriously. He comforted me on the couch, in bed, and in my reclining chair every day. He gave me a gigantic sense of confidence during an incredibly hard time. He was stable and silly and sweet and he loved me unconditionally when I was most frustrated with myself. He there on every bad day and every adventure, every nap and every time we dug for potatoes. We were incredibly bonded, in such a short time. Harvey was the funniest and most affectionate dog I have ever known and I can’t thank him enough for choosing me as his human.
Pardon my hiatus. It’s August, and I have been busy sowing, hoeing, harvesting, and selling vegetables. In my off time, I have been too weary to find words and inspiration. I have had more good days than bad and am operating steadily at a 6 to 7 out of 10. I am farming most days of the week, which is gratifying, tiring, and enjoyable. I have spent long hours bent over harvesting carrots, beets, and peppers, yanking out weeds and sweating out toxins. I am heavily medicated and highly caffeinated, but I am out doing and that feeds my heart more than any pharmaceutical.
I have made a few friends and spoken with many people through Lyme disease and this blog. Every single contact has been uplifting and educational. I have received many questions that I am unable to answer. “Why is it so difficult to get tested, diagnosed and treated for Lyme disease?” I have asked myself the same question. Why do the majority of doctors in this area deny Lyme’s existence, yet I receive postcards from the veterinarian reminding me to get my dogs vaccinated for the same disease?
This summer, Rolling Stone published an article about Lyme disease, the controversy, and celebrities who have been affected by the infection. They stated, “Lyme has been a known disease for several decades, but only in the past five years has it forced its way into cultural and medical relevance and become something that's widely discussed. Lyme is now the focus of A-list fundraising galas and E! News headlines. Unfortunately, the increased attention hasn't translated to a more hopeful prognosis for Lyme sufferers . . . For a disease that's been studied for 40 years, with many prominent people pushing for answers, the truly shocking thing about Lyme disease is how much of a mystery it still is.”
Though we don't have all the answers, we are still fighting and finding hope every day.
Virginia Commonwealth University News reports of a researcher who “has developed a test to more effectively detect Lyme disease in humans. And after successfully developing a Lyme disease vaccine for canines last year, VCU researchers are now closing in on a human vaccine for the disease.”
I have spent nearly 2 and 1/2 years being sick. My life is suddenly divided into before and after Lyme. Someday soon I will walk upright without a cane or a wobble or a limp. I look forward to when this illness doesn't dictate my plans, my pace. I can't wait to plow through my days and adventures without a nap and when I can go to town without a bucket of pills to keep me going. I crave a good day without fear of paying for it later.
According to the Huffington Post, “In December, President Obama passed the 21st Century Cures Act, which includes a specific clause that requires reform in the ways that Lyme and other tickborne diseases are addressed by the federal government. This is extraordinarily significant, and is a reason for Lyme disease patients, physicians and other advocates to be both hopeful and vigilant.”
At this point I would rather fight a tiger than battle Lyme Disease. The pace of this race is still much slower than I would like, but I’m still in it and moving forward bit by bit. Most days after work I collapse into a pitiful puddle in my reclining chair with my best pal Harvey. However, the other evening, after a full day of farming, I hopped on my shiny red bicycle and tapped into my old self. My dog Harvey and I ventured down the road to the park, wind in our faces and around and around until we made it back home. It was a short ride but a huge sign of progress. I can see the rainbow on the other side of this shit storm, and I believe we are approaching the happily ever after.
In the past couple years The Mountain Goats have comforted me with lyrics that sing straight to my heart. “This Year” is one song that speaks to me and this Lyme adventure.
“My broken house behind me and good things ahead
I am going to make it through this year
If it kills me
I am going to make it through this year
If it kills me”
It only took one tiny bug to change my world. My life quickly withered to work, rest, sweat, recuperate, over-extend, fall over, sleep, repeat. It has been more than convenient to work from home with my loyal confidante as my business partner.
Rett has been there to scrape me off the dirt when I did too much, to get me to bed safely when my vision went squirrelly. He took me to the hospital when I couldn't bear to sit up straight. He has made my meals and encouraged me to rest, rest, rest.
Early on in my sickness, my neighbor gifted me with invaluable advice. She said that when people offer to help you, take it because you are doing them a favor. It is a gift and an irreplaceable fuzzy feeling to help someone in need. It is important to humble oneself and admit the need for assistance. For those who want to help, let them.
I have had friends show up at my front door with weed-whackers in tow and many folks have lent a hand working at the market. I have been gifted bone broth, art work, blankets, and ice cream. I am eager to return the favors once I am well.
I always thought my energy was the most vital piece of me. I wasn’t that good at school, I fall asleep when I read, and I could never sit still long enough to learn a musical instrument. But I know how to work hard, and I have learned the most from doing, moving, and busting ass. I valued not who I am, but what I could accomplish in a day. Lyme Disease has stripped me of my most valuable characteristic.
When Lyme hit home, as farmers, we quickly realized that work was not the most important thing. We neglected certain crops and stopped having friends over. We learned that being sweet and supportive was the most important thing to do. I may not have the energy to do the dishes, but I can be nice most of the time and most of the time that is enough.
It turns out people don't love you less when you aren't able to do what you used to. In fact, they may love you more or have more reason to show it.
Even with receiving high quality care, I was on the fence about farming this season. I am passionate about my work and can’t imagine doing anything else. While I have started to see pieces of myself coming back, I have decided to move forward but go smaller this season. I have an excellent community and tremendous employees that have made this possible.
It is important for me to recognize though I am not where I want to be, I am still improving. Recently I went out after dark to see some live music with old friends. This is something I wouldn't have considered doing months prior. I have never been so sober at a concert venue, and yet I found myself becoming so overwhelmed with nausea that I vomited in the bathroom stall and then again in the parking lot. I had gallbladder surgery a week later.
Every woman on both sides of my family has had Cholecystitis, inflammation of the gallbladder that resulted in removal of the organ. I had mine yanked at a much earlier age than the women who came before me, and we are certain that Lyme has had everything to do with it.
Again, I have had to say yes to offers of meals, fond company, healing crystals, cards and homemade pie. Being sick has forced me to allow others to show me love me despite my own frustration with myself.
Though I get disheartened with not being who I used to be, I am constantly reminded that I am still lovable and that has lightened my load more than anything. Thank you for helping me, help you, help me.
My dad taught me the art of optimism. Most days, I can’t help but notice the silver lining in this shit storm. However, through illness I have struggled to keep my bright perspective and still convey the reality of this grizzly situation. I don’t like to complain, yet I crave understanding. Sometimes the bad days pile so high that I lose myself. Lately, my rose-colored glasses have become a little foggy.
The truth is I have been scared for my life. There have been times when I wasn’t certain I would survive this. There have been moments when my partner Rett was convinced I was dying. Now I can say that we are certain I’m going to make it. Lyme can be so difficult to comprehend because of its turbulent nature. One day I am hopeful and busy planning my upcoming farming season and ordering seeds for the coming year. The next day I am confidently calling the season off and researching residential Lyme facilities.
I have recently turned a substantial corner in my Lyme venture. Most days, I am rising out of bed and getting dressed and working, plopping seeds into tray-after -tray and facilitating their progress. After two months of physical therapy, I feel muscles coming back to me and strength that I have not felt in years. As I feel bits of myself again, colors become more vibrant and menial tasks become triumphant. I want to shout from the roof of my barn, “I swept the floor! I walked the dogs!” …and without falling over or losing my vision. These tiny tasks are considerable accomplishments after a long, dark winter.
I am not healed, but I am on my way. I have been on antibiotics for 10 months now. I take four different probiotics four times a day, and often my guts feel like I swallowed a bucket of nails. I have been religious with my health tonics, detoxing, and strengthening exercises. On top of my antibiotic regimen, pages of supplements, and prescription medications, I have been traveling every other week across state lines for biomagnetism therapy.
As I have been sick for so long, my mind has become open to just about anything that will get me well. As a society, we are so quick to judge or dismiss the more natural remedies that are far less damaging than the Western approach. Without much thought, we jump on board with extremely toxic medicine that has lasting negative impacts on our health. In the past two years, I have tried several different types of treatment, all of which had their role in getting me on the road to recovery.
Biomagnetism is certainly one of the key steps in my comeback. This therapy was invented by Dr. Goiz in Mexico nearly 30 years ago. The theory is that certain anatomical areas of the body can become either alkaline or acidic and create a habitat for bacteria and disease. The goal of biomagnetic pairing is to neutralize the bodies ph so that it can no longer be a host for pathogens. As the body is no longer a home where disease can thrive, infection retreats.
After a biomagnetism session, I can usually be found adhered to the couch due to a massive herxheimer reaction. A herxheimer reaction is the bodies response to heavy detoxification. As the body is ridding itself of illness, it often becomes hard to move or speak or think clearly. It’s feeling is like a colossal hangover minus the alcohol. There is no doubt that gigantic shifts are happening inside me.
I am not there but I am on my way. Progress has not been immediate, but I am patient—just like my dad taught me to be. I don’t have the energy for frustration or boredom. I cannot muster the strength to be pessimistic. I have no choice but to be present and rosy.
I don't believe this happened for a reason.
I like to think my character wasn’t—and isn’t—all that bad. Before my illness struck, I was not headed down a path of destruction or bad habits. I was an athlete and an organic vegetable farmer. I served my local community, donated boxes of produce every week to the hungry, and looked after my neighbors. Even my mom, the retired minister, didn’t believe I lived in sin.
Still, I don't think this illness has completely changed me or my life's course. I do believe that unfortunate circumstances make us grow and learn and be better for it.
…or that's what we say when it's all over.
I started writing because I thought I hit a turning point, the final stretch to the happy ending. People have been telling me for a long time, “It's going to get better”. I have done all the things that I know to heal and make a full recovery. I've endured enough pain and have experienced too many heart-aching days completely wasted.
I've learned more about myself and made positive changes. I have been extremely diligent with my treatment, what I eat, and how much I sleep.
I have dedicated these winter months to getting better. It is a glorious time of year to bear down and hit Lyme disease with every tool I have. I have spent most of these three months in bed, snuggling with my dog Harvey, and sleeping away this misery. When it hurts to move and my world spins with every exertion, it quickly becomes a full-time job to take this amount of medicine. My schedule quickly fills up with succumbing to every bad day, getting routine lab work, going to doctors, specialists, physical therapy, and trying to wrap my brain around being a farmer again.
The December issue of National Geographic was titled “The Healing Power of Faith.” The cover story delved into the power that belief has on our healing. It has been shown in rigorous clinical tests that the expectation of relief can induce self-healing. A strong belief that a treatment will work can trigger medicinal neurotransmitters and hormones. The expectation of a certain result can activate a neurochemical response that may inhibit pain or promote recovery. This is also known as the placebo effect.
I agree that there are myriad ways to heal. I recently traveled to see “The Hillbilly Psychic” because I was desperate for some positive news…but I only wanted to hear the good stuff. The psychic told me that I had been beaten up badly, but she reassured me that I was on the upswing. I had hit rock bottom and was starting to crawl my way out; however, this process would be slow. After I saw her, my health took one more nosedive, but since then, I have begun to see better days.
The other day, I met up with two other women facing a similar battle. We connected over words like biofilm, mycoplasma, babesia, borrelia, bartonella. These are terms that I have become all too familiar with. We have communicated through phone calls and emails. In my darkest hours, I have found light in reading one of the women’s powerful writing. Melina recently stated, “You can be extremely sick for a very long time, and your health may rise and fall and bounce around (mine did) and you can still get better. You can lose all hope for a night or two. I did. And you can still get better.”
If the belief alone could heal me, I think I would have been better a long time ago. For me I had to believe that it couldn't get worse and then experience the fact that it could. As it turns out, I can believe, lose all faith, and still recover. I don’t believe this happened for a reason, but I believe that finding reasons to heal can become a powerful indicator of my will to survive.
My doctor told me the best thing for your immune system is laughter.
I recently took a trip, my first large adventure in two years. For the first time as a mascot for the Blue Ridge Rollergirls, I sat on an airplane with my closest teammates as we headed to the biggest competition of the year, the international roller derby championships. My team had made it to the finals, and I was on my way to Portland, Oregon, to cheer my heart out. From the age of two, I grew up rollerskating in the Midwest. For seven years of my adult life, I competed in the sport of roller derby as a jammer for the Blue Ridge Rollergirls. For many years I was obsessed with the game, challenging my fitness and being the best teammate I could be.
That was until I was taken down by a tick bite.
The hardest part about being sick is grieving my old self. Somedays it feels like a past life, when I was healthy and strong. I could work 10 hours, ride my bike, attend roller derby practice, cook a nice meal, drink beer with my friends, and wake up and do it again and again. My life now couldn't be more different. My days involve taking pills and naps. My schedule revolves around doctors’ appointments and anticipating the next crash.
One evening, I found myself attending a webinar about releasing emotional baggage regarding Lyme disease. Prior to Lyme, I am not sure I ever used the word “webinar” in a sentence. Yet here I was, taking notes and increasing my knowledge of my own feelings and how to work through them.
I would have much rather been playing roller derby.
Yet from the comfort of my couch, I am learning. I am becoming versed in the value of compassion for myself. I am beginning to understand the importance of observing my emotions instead of riding them.
If I can give my hardest feelings the space to feel, instead of judging them, they quickly dissipate. If I get caught up scrutinizing my feelings, they become stuck and damaging. On a hard day, resisting emotions requires too much energy. It is not the emotions that are harmful but rather our emotions about the emotions. Guilt for feeling sadness, shame for feeling broken. We are all human, yet we lack compassion for our own humanity.
While in Portland, I watched my team, the Blue Ridge Rollergirls, battle against the competition. I cheered from behind a squirrel suit as they played with intensity, strength and smarts. They were victorious and graciously asked me to receive a gold medal along with the team. This was the time to be ecstatic, thrilled with pride and excitement. I was in fact, the mascot.
But I was having an emotional breakdown. The experience of watching roller derby was a harsh reminder of how weak and different I had become. I was full of tears. I missed “Skelley-Tor,” my old roller derby self.
The day after championships, some of my most loved teammates and I travelled up the coast of Oregon to Astoria, a charming, magical place and home of The Goonies. Fortunately, it is extremely difficult to remain sad while keeping company with friends and sea lions. From a person who grew up on the Great Lakes, I find sea lions hilarious and mysterious. I could spend days laughing at them as they snuggle, bark, and flop around.
We watched the sea lions from a dock for a long time. Later that evening, we found them at a microbrewery. The brewey had cut a hole in the floor of their establishment and replaced it with a piece of glass. You could observe the sea lions sleeping underneath the restaurant, laying on top of each other, making a loud racket when one got out of place. We can learn a lot from these animals. As Mackay Rippey reminds us, “When an animal feels emotional upset, it does something physical to release its feelings. Once the emotion is fully expressed, there is peace.”
It turns out spending time with sea lions on the Oregon coast, feeling my feelings, was the most effective antidepressant of all.
(photos by the talented Sheena Laine Honeycutt)
I’m fortunate to have caught Lyme disease when I did. I was no longer broke and uninsured. I am in a supportive relationship that has only grown through my illness. I am now self-employed and currently one of 16.9 million people who are newly insured under the Affordable Care Act. I would not be able to undergo my current treatment without health insurance, that I was once denied because of my health history.
I feel scared in a country facing new uncertainties. All I want to do is burrow myself deeper into hibernation. I want to surround myself in whiskey, sloth videos and the new Snoop Dogg, Martha Stewart cooking show. But I have been encouraged to speak up. I know not all of us share the same views.
When in college I travelled through India and Sri Lanka and brought home several parasites in my intestines. After treatment, I still experienced relentless digestive issues. They did extensive tests and put cameras every which way until eventually I had a diagnoses of Crohn's Disease. On the bright side, I ended up learning how to better care for myself. I altered my lifestyle, diet, stressors and kicked most of my digestive issues to the curb. Because of this history, I was denied health insurance.
Since Spring, I have been gearing up for a ferocious antibiotic treatment. I spent months before taking antibiotics, on probiotics, immune boosters and new prescription medications. My doctor wanted to get me to my strongest, most resilient place, in order to tolerate and benefit from the protocol as much as possible. We planned this in accordance with my farming season. I would be hitting the peak, the worst of it, in the non-production portion of my season. Here we are.
As the bacteria dies, it makes a lot of noise as it goes. This can manifest in headaches, nausea, heart palpitations, fever, rash and the general feeling of being run over by a small tractor trailer. There are many days when turning the pages of a book is too difficult.
Mepron is the generic name for a prescription anti-malarial that is a small part of my current antibiotic protocol. This drug is targeting the Babesia, a Malaria-like parasite that has shown positive in my blood work. It is a common co-infection to Lyme Disease. A tick is often not only carrying Borrelia (the Lyme bacteria) but a host of other bacterium that cause incredible damage. Somedays I take 9 different killing agents that target the various infections and mutations. We are constantly showing up with new moves, hoping to catch the boogers off guard in order to completely eradicate this disease.
Mepron, for example, one drug, without health insurance would cost me $1,298.88 for a 10 day supply. In many ways, I am lucky and Im not the only one. According to The Department of Health and Human Services, we have seen the largest reduction in the uninsured in four decades. I agree that the Affordable Care Act is not perfect but without it, millions of us would be left out sick and in the cold.
I watch the world crumble from my bed and there is so much I am inclined to do. I dream to volunteer, feed the hungry, clothe the cold, march, protest, roller skate. I want to make up a tiny bit for all of the hate, greed, racism and environmental neglect around us. Recently, I may have a few good hours a day. This is just enough time to read the news, fill prescriptions, call my mother. On a fantastic day I go to the store, cook a meal or go for an incredibly slow and painful walk with the best dogs in the world. I have begun planning my comeback tour. I know when I have energy again, where exactly I would like to put it, but the list is getting shorter, more efficient. My goals have become smaller and bigger all at the same time.
I've been sporting a cane and it's not for fashion. With my new pulsing antibiotic treatment I feel like there are holes being drilled through my hip sockets, ankle, knee, elbow and wrists, making me shake, weak and grouchy from pain. The doctor says the infection is nesting, seeking refuge in my joints instead of going for my organs. This is a good thing.
A year and a ½ ago I was diagnosed with Lyme Disease. I was treated and didn't get better. For awhile I thought maybe I was just recovering from the 2 months of antibiotics and steroids. Then I started getting more tests, blood work, an echocardiogram, a heart monitor, allergy testing, a nasopharyngeal swab that nearly touched my brain (don't YouTube this) twice. I travelled the region seeking new doctors. I searched in vain for a specialist that had all the answers.
Every time I received a new diagnosis or swallowed a new pill I held my breath and crossed my toes. I wished for a ticket back to normal. I have been labeled with a Patent Foramen Ovale (hole in the heart) , Hashimoto Thyroiditis (autoimmune thyroid disease), a mold allergy, vitamin D deficiency, chronic fatigue, polyuria, polydipsia, polyarthralgia, systemic inflammatory response syndrome, unspecified viral infection, headache syndrome, visual disturbances, volume depletion, tick-borne relapsing fever, fibromyalgia.
I have been paleo, vegan, ketogenic. At one point I have given up sugar, grains, coffee, alcohol, legumes, carbs, nightshades and root vegetables. I have consumed gallons of bone broth, sauerkraut, supplements, vitamins. I have seen the 3 best acupuncturists and herbalists in this area. I have been prayed for. I have done yoga and I have drank my fair share of whiskey. I have detoxed, rebounded and I have slept for weeks.
Eight months ago we moved out of our house and into the barn. We had discovered a toxic mold issue in our home. It had obviously taken a toll on my immune system and health. I spent months sleeping in the fresh air, through freezing temperatures with no walls. In my most adventurous years, I was never fond of winter camping. We thought I would finally get better. I didn't.
Lyme Disease is so frustrating because there is not a clear test or a well known effective cure. Most Lyme patients spend years experimenting with treatments, diets, and making huge life changes.
I tell myself 100 times a day that “I'm ok”. I filled an entire wall with inspiring quotes, beautiful photos of people that I admire and love, letters that I have received, cards and drawings from dear friends. I look at it everyday. Nothing was working.
So I got a puppy.
May 2, 2015, is ingrained in my memory like a bad tattoo. It was the day that tick took ahold of me and infected me with a debilitating disease.
It was a glorious spring day in the Blue Ridge Mountains. It was the best time of year to be a farmer. The crops were young, full of hope and potential. There was enough time in the week to prep, seed, plant, mow, repeat. Rett, my other half, partner in life and business, was at the market pedaling produce. I was working on the farm, the usual breaking stuff and fixing things. Each year, I have gotten better at the fixing part. The sun was shining but not too hot.
The best part of each day was when the sky turned golden, and the dogs would start jumping and spinning with excitement. I would change my shoes and hop on my bike or go for a jog. We would tuck into the woods where the air was cooler and our heads felt lighter.
We had three dogs, Milla, the boss, Oscar, the loyal protector, and Melvin, the lovable stinker who just showed up one day. Milla was arthritic in her old age and didn't venture on too many hikes anymore. But for some reason, that day, Milla wouldn't let us go without her. With Milla, a short jaunt turns into a lengthy adventure, taking our time, catching our breath, sniffing the mountain air and relishing the views. I was running late. A very important little guy was turning two, and his birthday party was that evening.
As we finally got back to the farm, I jumped into the car and went to town. The birthday party was a success. The kids ate cake, the adults drank beer, and everyone was happy. After the party, a girlfriend and I went out for tacos and margaritas. We talked about the state of the world and our relationships, politics and kids. It was the end of a long week, and I was feeling ready to wind down and get some rest.
I drove the long drive back to the farm where my dogs greeted me, and I poured myself a night cap. Some nights I get so excited for bed that I can't sleep. I threw off my pants and there it was . . . a tiny tick embedded in my left calf muscle. I have pulled many ticks off me before, but none had made me angry. This one struck rage in my heart. I cussed, pulled it out of me, flushed it down the toilet and went to bed mad.
It left a mark.
That Wednesday at the Farmers Market, the sun was beating down hard on the back of my neck, and I noticed some small bumps arising on my skin. I figured it was my delicate epidermis readjusting to the Spring UV rays. I was wrong. Within a few days I was covered in a red, burning, irritating rash. I was hot, tired, and cranky. It was May, and I was a farmer. My doctor put me on the standard course of antibiotics, Doxycycline for two months. Most things you read on the internet say this will cure most tick infections, if you catch it early.
They were wrong.
(Painting by the wonderful, talented, supportive Jaime Kaye Lockard AKA Riot Crrrls)
At the time, I didn't know the journey I was about to face. I'm glad I didn't. I also didn't know that was the last hike Milla and I would enjoy together. Sadly, she went to doggy heaven three months later.
Milla was not only the boss of the farm: She was a legend. I only knew Milla for the second half of her life, but that was enough time for her to gnaw at my heart. She was as tough as nails and sweet as pie. She was shot in the face and barely flinched. She ate goats for breakfast and turnips for dessert. She was terrified of thunderstorms and never hesitated to seek comfort on top of your face. She told you how she felt, what she needed, and never apologized for any of it.
Milla had spunk and sass till the morning she left us. She taught me that we gain more from being vulnerable, from sharing our needs. Strength is speaking up, and silence has only made me bitter. In being open about our struggles, we can learn and try to understand and support each other. No apologies.
I am stepping out of my cave because I have something to say.
It has been easy to be silent, to crawl into a hole, to wait it out.
It has been easy to play it tough, to convince the world I'm getting better… even if some days I don't believe it myself.
It has been easy to hide when I'm not feeling right…but I have been an empty shell of my former self for far too long.
I could just keep my struggle between me, my dogs, my family, my doctors, and my loving, supportive other half.
However, I am learning that being silent and letting that emptiness fill me like a tick gorged with once-healthy blood does not help me or anyone else.
I have been struggling with Lyme Disease for a year-and-a-half.
Now I refuse to remain silent.
Lyme Disease is a thing, a very real thing that is commonly misunderstood by the most educated medical professionals. It is a scary, tick-transmitted disease and the fastest growing epidemic in America. Lyme Disease has been documented on every continent except Antarctica. Despite these staggering statistics, there is yet to be conclusive, affordable testing for Lyme and the various co-infections that often accompany the disease. People can be misdiagnosed for years or decades. The spirochete bacteria— so graciously gifted by the infected ticks—can wreak havoc on your brain, your heart, your nervous system, your joints, and your mental and emotional health. It can affect every organ in your body and rob you of your energy, cognitive function, and the ability to live and move.
Still, there is a lot of controversy and denial about Lyme Disease in the standard medical community. I have been to the Infectious Disease Department, supposedly the highest level of care for this sort of thing, where they said Hey, you are okay.
I wanted so badly to believe them.
I have ended up in the emergency room, where the doctors told me that Lyme Disease is not actually around here. Don’t worry.
I wanted so badly to believe them.
It is hard to advocate for yourself when you are sick, but I’m here to say that Lyme Disease is real. It's here and nearly everywhere. It took me a year to find a medical team who knows and understands the disease’s effects and can treat me appropriately and successfully. Right now, I have full confidence that I am finally on the right path back towards health.
Yet it took me time to get here, time to crawl out of my cave.
I hope that in speaking up, in moving forward, I can give someone else a straighter path to recovery. I hope that someone else who is battling Lyme Disease knows that they are not alone and that much like myself, they will find the strength to speak up and share their story.
'Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us."