"What is Lyme Disease?"
I've come to know that the MOST common question that any Lymie receives is the aforementioned question above. I've found myself answering this question dozens of times, and I am quickly reminded how tragic the Lyme epidemic is due to the lack of information and education that the average person has on the topic. There is nothing "rare" about Lyme disease, as there are 27,000 new cases of Lyme disease in the United States every MONTH! And yet those who do not suffer from it often seem to turn a blind eye to it because the medical system has caused society to believe that it "doesn't exist." As a Lyme survivor myself, I can attest that it does exist, and it is one of the most challenging adversities that I believe a human being can suffer from.
So what is Lyme disease? Lyme disease is a bacterial infection that can spread to virtually any organ system in the body due to its spiral shape that easily can drill into any tissue, cell, muscle, or organ. Lyme disease and its co-infections can attack its victim and leave it completely paralyzed or in severe and unbearable pain for years, and Lyme disease is a constant battle to fight and the chances of beating it are slim to none. And yet there are thousands who fight every day, despite the harsh reality that is Lyme disease. Lyme disease is science, and yet it is so much more.
Lyme disease is pain. More pain than I ever believed a single human being could bear on their own until I was forced to bear it myself and watch many of my loved ones bear it as well. Lyme disease is loneliness, isolation, and insufferable boredom as you spend a lot of the time waiting for a treatment to work (or not work), waiting to feel better, waiting on doctors and support that never comes, and waiting to be well enough to be able to live life like anyone else. Lyme disease is blowing all your money on treatment that you don't even know will work, trying anything and everything to feel better, and crying in prayer during many dark nights because it's impossible to endure on your own. Lyme disease is hoping. Because sometimes when you've been stripped of everything, hope is the only thing you have left. And let's not forget that Lyme disease is resilience, patience, perseverance, and at times its just pure grit. Lyme leaks into everything, and it changed my life. And it is currently changing the lives of thousands and millions of others who are fighting the good fight every day of their lives.
Why is it important that we seek to crush Lyme? Because with so many suffering, we have to fight to crush the disease before it crushes us. And if we all ban together on this issue, we may find that doctors, friends, mothers, fathers, brothers, and sisters will start to listen to us. And once that happens we can change the world. We can offer more help and hope for the hands that hang down by the crushing the grip of Lyme.
So the next time you find yourself talking to a fellow Lymie, take time to LISTEN and offer love and compassion. That small act can truly be one big step into crushing Lyme disease and the stigma that comes with it. Lyme disease may try to crush us, but it never will because we do not intend to quit anytime soon.
This post was inspired by Splash of Lyme's "Crushing Lyme" campaign. You can follow this amazing Lyme warrior by following @splashoflyme on Instagram and checking out her amazing blog here. Thanks so much to Courtney for starting this and for sending love to all the Lymies this Lyme Disease Awareness month!
I wish I could tell you that it was going to be easy. I wish I could say that the road of Lyme disease was something that everyone understood and that there wouldn’t be moments of disappointment or despair along the way. I wish I could explain that there aren’t very many tears and that there is an absolute solution to it all. I wish I could express to you that it wasn’t as mindboggling and scary as it is.
The truth is that Lyme disease is one of the most difficult adversities that a human being could experience. Lyme is commonly all encompassing, meaning that it will impact every ounce of your life. And at some point, you’ll find that you’ve been changed forever and that there is no going back to the person you were before. The day will come that you’ll glance at yourself in the mirror and you won’t recognize yourself. That first day of sudden realization will be met with tears and grief, but with time will be transformed to acceptance, gratitude, and hope.
The reality of Lyme disease is that all of the pain and hardship may be strikingly real. However, I can promise you as well that the reality of Lyme disease can also have an elegant beauty about it that is found deep within the veins of your pain and struggle. A beauty that is born from your strength, resilience, courage, and determination to continue forward the best you can despite your difficulties.
There may be pain and tears of sorrow, but there will be days of relief and rejoicing of your victories. There may be anxiety and despair, but there will also be moments of peace and gratitude that runs deeper than it ever did before. There may be loneliness, but there will be a connection and love from God and others deeper than you have ever imagined. Furthermore there may be days where you feel unlovable and worthless, but your continuing faith and persistence will prove otherwise.
You see my friend, it may be piercingly difficult at times, but it is those difficulties that will shape you into the glorious person that you were destined to be. For progression, growth, and grace bloom out of the deepest adversities.
You are not alone. You are strong. You are loved. Don’t give up. You may have Lyme disease, but Lyme disease will never have you. Your body has the capacity to heal and there are resources and protocols out there that can and will heal you with patience and persistence. There is hope and healing ahead.
Stay strong my friend. For there are battalions of people and angels rooting for you and cheering you on in your journey of Lyme.
A Fellow Lymie
This post was inspired by Lyme Now who has kicked off Lyme awareness month by starting the #lettertoalymie series. You can check out their website and read a lot of other letters to Lymies by clicking here!
Lately, I've found myself pondering the pure and seemingly sparkling crystals that so frequently fall from the sky these days. Snow is a funny thing in that there is no one snowflake that is exactly the same. Each has its own Divine design, and the path that each snowflake takes to reach the ground is unique to that particular snowflake and looks different depending on its time and place.
Similarly, we as human beings walk different roads, come to different bumps and turns, and come equipped with our own unique design that God blesses us with when we came down here. I often wonder why my path in life often seems so different than other's may be... but then again I'm sure that all of us experience that daunting perception at some point in our lives.
With that in mind, I've watched many people suffer from chronic illness and the wide range of differences that come from being sick. This phenomenon is something that would do everyone some good if they took the time to look into the hearts and minds of these people who suffer on many different levels. The fact of the matter is that there are no two chronically ill lifestyles that look the same. We're all simply moving along on our own individual paths, trying to survive the best that we can.
The words "chronically ill" are usually accompanied by a substantial amount of expectations and perceptions from others. There's a certain "type" and "look" that apparently we're all supposed to have, but the reality is that some of us just don't have that "look" but that doesn't make our lives any easier, and it doesn't take our painful circumstances away.
The majority of people view illness by the book. When you're sick you lay in bed with body aches and head congestion while consuming large amounts of ibuprofen or Tylenol to relieve that pain and wait for it to pass. It may take a few days of discomfort, but it passes, and you move on with daily life. Others simply push past the pain and continue their daily lives and are lucky enough when their symptom cease, despite the need to persist in their prior commitments and responsibilities.
Now when you're REALLY sick it's a little different. When you're in unbearable amounts of pain, you rush to the doctor, load up on pain medications, and wait for hard-working health experts to diagnose and treat you. And after countless tests and hours, these loving and caring doctors treat you with medication or surgery, and you go home ready to recover and your pain eventually passes so you can live a normal life.
This is what illness looks like, right? This is how we manage our health and wellness so we can feel vitalized and renewed, right?
A flu virus is one thing, but being chronically ill is an entirely different paradigm that requires a lifestyle change and a realization that maybe being sick isn't what you thought it was in the first place.
Many chronic illness patients do spend a lot of time in the hospital, and many chronic illness patients do treat their symptoms with pain medications, which is definitely not something to downplay and consists of an incredibly difficult road. But my story and many other's stories are different, and that doesn't make any of our pain less valid or less painful.
What most chronic illness patients don't tell you is just HOW MANY doctors they had to go through in order to find one that would finally help. What a lot of us don't talk about is the PTSD that comes from how badly we're treated by people, and the desperation we all have to find answers. And what a lot of us don't tell you is that hope may not be found in a doctors office or in a medication, and that doesn't mean that we're crazy or that all of our symptoms are psychosomatic. It simply means that our path is different, and our answers are different.
I'm never in the hospital.
I've don't take any medications.
I treat my symptoms with natural food, remedies, and protocols.
And I never managed to find one doctor in my area that helped me very much.
And the things I'm doing now are HELPING ME TO HEAL!
My symptoms can range from tremors to being light-headed, to passing out after taking a shower, to skin lesions, panic attacks, extreme fatigue, and severe abdominal pain. But sometimes the pattern is that one day I can feel healthy and strong, and the next day I can hardly function at all.
Sometimes I feel like I'm losing my mind.
Other times I feel free and hopeful.
I pray every day for the feeling of the floor falling out from underneath me to cease, and for the grief that comes from illness to pass. Some days it does. Some days it doesn't. And that's just a normality for me and many others.
Chronic illness is a wide spectrum of struggle and perseverance, and there is no one size fits all. For some of us, it's doctors and hospitals on the daily. For others, it's constant protocols that never seem to end. And for others, it's diet change and learning how to be healthy half of the time and sick the other half of the time. For others, it's all of those things combined and it's often overwhelming and exhausting trying to keep all of the daily health routines straight.
Whatever it is, and no matter your place in your journey... your pain is valid and I urge you to heed not the expectations and perceptions of others who have never walked in your shoes. It would do the world some good if all of us could increase our love and compassion towards those who suffer in any way. The more we're aware of the suffering around us, the more empowered we can be to pull others out of the swamps and dark places that we all can find ourselves in.
Despite the difficulties and the struggles, there are some things that all chronically ill people have in common:
All of us are warriors. All of us have battled sore affliction. And all of us are beautiful, resilient people who are seeking to live life to the fullest and emerge out of the norm of society to bring light and healing to a world that craves those things. As we're sculpted into the warriors that we are, we're transformed on our path and seek to touch the world with our newfound being, just like the snowflake that travels to the ground to ultimately bring beauty into our lives and nourishment to our earth.
I sense extreme pressure that builds up in my chest and makes my nerves tingle from my heart all the way to the tips of my fingers. Pressure that makes me fear the future and gives me a severe distaste for my present. Pressure that brings tears to my eyes when I least expect it and leaves me looking at myself in the mirror wondering who that girl is.
I'm not completely sure where this pressure comes from, but I have a slight notion that it originates from past traumas. Memories of insufferable pain from Lyme disease for long nights. Recollection of people that I love making promises they never intended to keep. Thoughts of being hurt by the harsh words and actions of people who don't even seem to understand how much effect you can have on another's human heart. This odd awareness for past experiences flashes through my mind when I least expect it, and leaves me feeling like something inside me is crawling up my spine. I can't stand it, and for once I'd like to just be me and not have to worry about being crushed again by the insensitive human temperament that so many seem to possess.
I want my heart back, and I want to feel comfortable in my own skin again around other people.
When I'm occupying my own space, I get to experience a sense of acceptance of the girl that screams to be free. In my sanctuary, I have the privilege of being that girl that doesn't eat sugar and experiences a thrill from eating healthy food. I'm that girl that can sense things that others can't and is allowed to be highly sensitive to smells, tastes, sights, and the little beauties that are all around us, and it's not crazy, it's insightful. I'm that girl that sings her favorite song as she's walking down the street and wears maxi-dresses for no special occasion, just because she can. I'm the girl that jumps up and down when she gets excited over seemingly insignificant things, and I'm that girl that obsesses over to-do lists and loves schedules, but also loves feeling free as a bird! I'm the girl that never does anything half baked, and it doesn't matter if everyone else executes everything in their lives with half the effort, because she can be happy living in her full and vitalized life. I'm the girl that lavishes my entire heart in her endeavors and thoughtfully verifies that the beautiful living creatures that she comes in contact with can experience the intense Divine love that she can bestow.
I'm also that girl who can be smiling one minute with gratitude that she's not in pain and crying the next because coping with trauma from illness is SO HARD. I'm that girl that can laugh at the humor in life one second and be on her knees in prayer the next praying for release from severe anxiety and depression. I'm that girl that can be on my feet and doing yoga one day, and in bed with a heating pad hardly being able to move the next, because Lyme disease sometimes breaks you. But when I experience my whole being in a safe place for myself, I don't feel completely insane for the various and rapidly changing ups and downs. When I'm safe, I can accept that I'm just a girl with a chronic illness who is trying to learn how to heal to the best that she can and sometimes she's dissatisfactory and defective at it, other times she thrives, and that's okay!
In the presence of large groups of people, everything changes and I often find my indestructible and merciless brick walls building up around my heart as a protection against the naysayers. I often can feel the lock and key as I stuff my personality in a corner for the meantime. I often feel trapped to be like everyone else, and if a little part of me comes out it could be dangerous in the hands of people who disagree or misinterpret. I often find myself performing the act of the perfectly composed woman who wasn't just in excruciating pain the night before and can be wherever it is I need to be because I'm expected to be there, even if my body cries otherwise. Concealing my thoughts, holding my tongue, not venturing too close... Because if you unexpectedly get too close to someone who bites... you're left suffering on levels that they don't understand simply because they haven't experienced their severe adversity yet. Protecting myself is chaining, exhausting, and lonely. And for that reason, I choose my safe space as often as I can.
Everything changes in the presence of people who misunderstand and misinterpret. And the unfortunate truth is that so many people throw wrath and fear at others simply because they lack the ability to reach their hearts into someone else's. So many lack the ability to be raw and honest with themselves and others about their lives. We all struggle, and if the human struggle was a shared effort where we all sustained each other, there wouldn't be so many who feel the need to live a double life.
I often wonder what it would look like if it were possible to compile all the tears from human suffering into a box, how big that box would have to be. And if people had a chance to witness how large that box was, if it would soften their hearts in a way that made them slightly more sensitive to the people around them and slightly more aware of the hearts that are crying out for help. If we knew how deep other people's waters were, would we take extra time to stop and help them so that they don't drown? And if everyone stopped and helped the people in deep water, maybe all the water as a whole would be lessened to the point where we could all patiently wade through less troubled waters together. Maybe if we all decided to be a little more real, and a little more honest... then maybe those who suffer wouldn't feel the need to live a double life because then they would know that they weren't along and that there were strong hands waiting to lift their aching hearts.
God doesn't expect us to live out our lives in cold hard shells so as to not let other's notice our pains. God desires us to love and lift the hands that hang down. God wishes us to let love penetrate so deep that we can all feel His Divine love through each other. I hate the pressure I feel to live a double life as a chronic illness warrior (and I know I'm not the only one), and I've found that I'm more effective at bringing light into other's lives when I'm simply striving to be my best self. Maybe all of us could come to that realization in a way that could change the world.
It recently occurred to me that I've been fooling myself. I've faithfully proclaimed on social media year after year since I was diagnosed my deep hope that the next year will be easier, or that it will be better than the year before. I've hoped, and prayed, and fought my way into society's view of a "better" and "easier" life, only to find that this "easier" life that I'm seeking for doesn't exist. There's no such thing as "easy" in the vocabulary of a chronic illness fighter, and it turns out that the moment you think that the chronic illness battle has become "better" or "easier," something else painful and heartbreaking will come along that will try your resilience and test your nerves. And then after you've made it through that trauma, your illness will flare again. Due to this eternal pattern that keeps kicking me, I have finally reached the point in my life where I can say that I am no longer hoping, wishing, or praying for an easier year ahead!
Sounds like I've reached the point of intense embitterment, but I wouldn't exactly call it that. In fact, I've finally discovered that this statement that I'm making isn't a negative or chaining statement at all. In fact, admitting to it is probably one of the most freeing experiences I've ever had!
For as long as I can remember, my family's motto has always been "we do hard things." I was taught growing up that working hard and doing things that appeared to be difficult would bless my life and create a stronger person inside me. I was taught that striving to achieve things that were seemingly out of my reach was healthy and something that should be practiced on a regular basis. Back then it never occurred to me that there was something harder out there than Saturday morning chores, striving for a 4.0 GPA, and losing a best friend. Hard things came and went when I was young, but eventually, there will come a time in all of our lives when those hard things won't just leave. There will come a time when those hard things stick around, and you'll find yourself on your knees begging for relief more than once.
I've been in that place for years now, and I think I'm finally beginning to understand and live the truth that adversity and affliction has a divine purpose. Things may not get easier in the moment, but that's okay. Because God promises us better things through our suffering and God sustains us every step of the way. It's through the hard things that I've developed sensitivity to God's precious mentoring that He blesses my life with.
C.S. Lewis says that "God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world." I think my world has been roused and it's been a loud and painful awakening, but completely worth it. Many of us have probably experienced that this year, and what a blessing to say that we've learned this lesson firsthand.
I'm not going to begin to pretend like I have life all figured out. In fact, I often find myself in prayer expressing how unsure I am about life. But there is one thing that I do know:
Sometimes life is absolutely awful. Sometimes it's blood, sweat, and tears to make it through the day. And sometimes it seems absolutely unbearable. Other times life is magical, joyous, romantic, and absolutely beautiful to the point where you can't seem to breathe in enough of the moment, and you wonder what you could have possibly done to be blessed with such a perfect moment in life. And other times life is somewhere in between... mundane and boring. And the reality is that in order to live life to the FULLEST, every single one of these experiences is absolutely necessary. Because without the pain we wouldn't appreciate the joy. And without the mundane, we wouldn't appreciate the magic. And the glorious truth is that we have a loving God who sustains us through it all. How loving and merciful He is to enable me to do the hard things, even if they seem to be never-ending.
So this year I'm not praying or hoping for things to be easier. I'm hoping and praying for the strength to endure the hard, the wisdom to appreciate the magic, the patience to remain hopeful through the mundane, and the courage to submit to God's will even if it's more difficult than past years. May we all have the ability to discover those places of balance and vitality in the year to come.
I'm Claire Dalton, I'm 22 years old, and I suffer from endometriosis, anxiety disorder, depression, arthritis, joint pain, muscle pain, chronic fatigue, and a whole host of other symptoms that can be wrapped up in a pretty little package that is referred to as CHRONIC LYME DISEASE. I'm bold, strong-willed, and driven, and when my quality of life was ripped out from underneath me, I desperately needed all of those qualities to keep myself alive. My story is a story of blood, sweat, tears, and a family burdened with Lyme disease who chose not to quit and still chooses to stay and fight every day. Lyme is brutal, but not brutal enough to kill us.
My story begins when I was a teenager my junior year of high school. I was sixteen when my mother became gravely ill and bedridden in a more permanent manner. I don't ever remember my mom being completely healthy. She frequently experienced flares of illness of every kind throughout each winter season, and in the summer it would improve. Come to think of it, this was my pattern as well, but we never gave it a second thought because we were so frequently met with comments like, "it's normal for kids to be sick all the time" or, "all kids are frequently sick during flu season." That was the belief in my culture, my home, and my family, and we didn't realize how wrong that statement was until one day my mom went down and didn't come back up. One day everything simply plummeted... and this time waiting it out didn't make it better.
I went to school like a normal teenager. I looked like a normal teenager. I worked hard and studied hard like a normal teenager. But my home life was far from normal and I was often filled with overwhelm and fear because I never knew whether or not my mother would be alive when I came home from school that day. It almost seemed at times like we were simply waiting for death to pass over our house because death would mean the release of pain for my sweet mother. Our home was often filled with moans, groans, screams, tremors, and seizures due to how much pain she constantly suffered from. I desperately wanted my mom to live, but not like that. Not while death seemed so close on such a constant basis. Hospital runs, medications, being forced out of our house, trial and error of every diet under the sun! It was a living hell in my house, and I prayed so often for the feeling of the floor being ripped out from underneath me to cease.
Medications made things worse. Doctors assumed my mother was psychologically unwell. Friends and neighbors stayed away in fear of "catching it" or simply not knowing what to do. My mother went undiagnosed and misdiagnosed for a seemingly endless period of time. We craved a diagnosis. We craved answers. We craved an ending to the constant suffering.
In the year 2014, we finally received a diagnosis. Chronic Lyme disease. We received a diagnosis only to find that there is no proven cure and no doctors in our state that knew very much about Lyme disease. We searched elsewhere for answers and protocols, and the long and arduous journey of healing for my mom began.
Meanwhile, I worked hard to graduate from high school. I recall major brain fog, severe anxiety, extremely painful menstrual cycles, and a constant state of stress in high school. It never occurred to me that I could be diagnosed with the same disease I listened to my mother scream from night after night, but my first semester as a freshman in college was my trigger, and I went down fast.
I remember existing in a constant state of panic in college. Nothing ever felt right and my heart and nerves often felt tightly clenched as I spent many dark nights experiencing panic attacks all by myself. My heels and feet would hurt and ache every time I walked across campus to the point where I tried buying gel inserts for my shoes that never worked anyway. I couldn't remember hardly any word that came out of my professor's or tutor's mouths, and I had to come home and sleep for three hours just to make it through each day. I suffered from severe excoriation disorder and would claw at my own arms until they bled and would leave massive scarring. I had major joint and muscle pain, and my menstrual cycles were nearly unbearable. My hair kept seeming to fall out in massive amounts, I'd break out in skin lesions, and I was losing weight faster than I could count.
"Your test results came back positive." That's not a sentence any college student wants to hear, but I heard it and my heart sank. Doctors appointments, tests, and 30 vials of blood later, I knew I had Lyme disease. I also knew that if I didn't change my lifestyle and get on treatment soon, I'd end up being the one in screams.
I started my first treatment while I was still going to college. At the time my mom had been on a cancer protocol for about a year that was known for being very beneficial to Lyme patients. So far that protocol had healed her to the point where the screams had stopped and there were some days that she could get out of bed. We decided at the time that the best route was for me to go on the same treatment. This began an entirely new way of living.
I remember throwing everything out in my pantry and changing my entire diet. No more sugar, dairy, meat, gluten, citrus fruit, tomatoes, or spices of any kind for a while. I didn't know how to cook and I submitted to eating bland food for quite a while. I remember sleeping with oxygen tubes to prep for treatment the next day. I recall waking up early, taking all my supplements and my treatment, and hoping that I wouldn't herx too hard so I could make it to all of my classes that day. At the end of every day, my treatment required me to record all of my vitals and rate each symptom from one to ten. I so often marked high numbers on each symptom, my heart rate was always in the hundreds, and I always seemed to be bone cold. My grades dropped dramatically, and everything felt awkward and uncomfortable. I had good days and bad days, but the bad days usually left the good days as recovery days. The problem with Lyme is that it usually gets worse before it gets better. As was the case with me.
I left college before the semester was over. I felt like a failure, but I fell to the floor and cried tears of joy when I finally reached home that day. It felt so good to be home. It felt so good to know that at least now I could be sick in my own house. I looked in the mirror that night and wondered who the girl was that was staring back at me. I pleaded to God for help. I knew I had a long road ahead of me. I just don't think I knew what that entailed.
The herxing was brutal at first. I remember my first major herxheimer reaction was so excruciating that I lost my ability to get up and walk to the bathroom by myself. I recall my head throbbing every time I opened my eyes, and my entire body hurt so bad that I couldn't lay on one side of my body for too long because the weight of my own body was too much. I remember everything spinning, and passing out in front of my bedroom door after I attempted to walk by myself. What I didn't realize then was that overcoming that herx was the first of many baby steps to getting my quality of life back.
After a year of that treatment, I changed my diet again. I gradually reintroduced spices, dairy, gluten, and meat back into my diet, taking care that everything was organic, whole, and clean. I had no desire to eat refined sugar again, and I still don't. I found myself gaining some of my life back as symptoms began to peal off little by little. The severe pain that came with endometriosis was torture every month, but the improvement of symptoms the other times of the month gave me hope for healing. I continued trying different protocols. I tried high dose vitamin C IVs, magnesium injections, large amounts of supplementation, and light exercise as I could. Some things started to clear. Others didn't. Lyme disease always seemed to leave me frustrated and confused because things would come and go and extreme pain left me scarred with memories and fear of if or when it would come back.
The Sauna Detox Protocol is the treatment that CHANGED MY LIFE. After a vigorous two months of sweating it out in a sauna, I began to feel like I had my life back. My skin cleared, I began to gain the weight that I had lost, my hair started growing back, my pain lessened, and the herxheimer reactions decreased. I gained my energy back and my panic attacks eased. My brain fog, fatigue, and cognitive dysfunction lessened, and even my endometrial pain improved! I never believed that I would get my life back, but to a point, I did. I don't have non-stop excruciating pain anymore, and I can't begin to express how thankful I am for the healing that I have been able to experience in the past two years.
Now, I have the unique opportunity to look back and contemplate everything I've been through, and I often take time every day to allow myself to feel the emotional pain that comes from experiencing such large amounts of physical pain. I still struggle with severe anxiety, lower abdominal pain from Endo, and excoriation disorder and I'm still fighting to overcome. I now treat my Lyme with AmpCoil, and I've found that if I don't regularly practice treatment and self-care my symptoms will reappear. What helps me function is consistent 8 hours of sleep every night, drinking half my body weight in oz. of water every day, and only consuming organic and whole foods.
PTSD is a real thing that Lyme patients suffer from, and I often find myself having flashbacks of severe pain flares that leave me paralyzed for a time. With that said, I often find myself holding onto God's love in those moments, and that gives me a reason to keep going and keep striving for a cure. I am not "cured." I do not live an easy and symptom-free life at all times... but there have been so many blessings and miraculous amounts of healing that have taken place in the past couple of years, to which I am incredibly thankful for.
To anyone suffering from a chronic illness... I've learned that even in the darkest nights, there is HOPE FOR HEALING. Some of us in life are called to pass through the darkest nights and the scariest of circumstances, but those experiences are for our refinement and for our good. The road ahead may be full of darkness, but there's always a light. I've now gained the wisdom to know that it takes more than one protocol to find healing. It usually takes many tools in your toolbox to survive the depths of Lyme disease. I've also gained such a love for the concept of suffering and why some are called to pass through such deep adversities. I'm learning every day how to accept my illness and love and appreciate the good moments. I'm learning to love my scars, for they are my battle wounds that tell the story of how I overcame something horrendous. I'm learning how to be patient and flexible with God's timing instead of my own. And I've gained a passion for loving and helping people who suffer through dark misfortune and come out stronger in the end.
Chronic illness warriors are INCREDIBLE people! If you want to learn about resilience, dedication, desperation, hard work, and perseverance, love somebody who is sick. Because when you get sick for the long haul, something inside you begins to bloom that is the only thing that will keep you going during your most desperate nights. And then one day you'll wake up and realize that the bloom inside you grew into a garden of flowers that you didn't know you were growing.
Some days are good. Some days are bad. Some days are bland and some days are more than I feel like I can handle. Progress is not a constant upward motion, but a roller coaster that makes you want to scream at times and laugh at others. It's all about learning how to enjoy the ride. This is Lyme disease. This is invisible illness. This is my Lyme life.
You can find more information on the Sauna Detox Protocol HERE
I frequently travel through my life with a sense of a double identity as our society loudly screams frivolous ideas of success and popularity that seem to be difficult to ignore. And as I attempt to "fit in" with my peers, I always find myself feeling slightly fake and two-faced.
As a woman living in a world brimming with photo-shop, snap-chat filters, and unrealistic glimpses into other people's lives via social media, it's easy to blindly chase after the false belief that in order for me to be a thriving influence in society I must be living up to society's standard: I must be going to school full time, holding a job, eating the best tasting food, traveling to the most exotic places, fulfilling all my callings in the church, and I must be stunningly beautiful every day. I must never have problems... and if I do I must keep my mouth shut in order to avoid causing anyone discomfort. If I experience emotional pain, I must quickly throw it under the rug and pretend it doesn't exist. I must smile... but not too wide and not too frequently. I must be happy... but not too emotional or enthusiastic. I must be tired... but simultaneously drill myself to accomplish all the to-do lists, schedules, and appointments. And while I'm juggling all that... I must also be having the most fun and posting it all to Instagram and Facebook so that everyone else can feel bad about how they're not having enough fun. Thank you social media for this unrealistic and impossible view of reality.
I've tried to be that girl. That girl that has perfection in the bag. That girl that appears to have vitality and richness overflowing in her life. That girl that doesn't talk about her inward struggles in fear that she'll make other people uncomfortable or that she'll give the wrong image or idea. But that girl is fake. That girl isn't real. That girl is living a double life and because I've always tried to be that girl, it makes it easy for my peers, associates, and family to assume that I'm not really sick.
"You don't look sick."
"She must be faking it."
"You're a beautiful girl that probably just feels like you're not getting enough attention."
"You must thrive off of attention."
Some of the comments that all chronic illness warriors hear on a regular basis cut us deep because we're simply trying to survive in our own skin to the best of our ability. What's worse is the words that go unsaid. What's worse is the gaping mouths and blank stares we receive that translates to the disbelief that any person actually suffers on that kind of level. What's worse is the attempt of someone apologizing and stating how hard that must be because they don't know what else to say. The silence is just as painful as harsh words simply because it traps us in the corner of disbelief where we constantly feel the need to prove that we're sick.
So I'll be the first to admit it... You're right... I'm faking it.
I'm faking the smile on my face when I'm trying so desperately to hold back tears. I'm faking that I'm feeling okay when I'm usually riddled with muscle pain, nerve pain, or severe anxiety. I'm faking that I'm living life pain-free when there are so many times that I feel like I'm suffocating under my own skin. I'm faking my sanity when I feel like there are bugs crawling under my skin. I'm faking that I'm flying when at times I feel so utterly close to drowning beneath the pressure of it all. I'm faking that my heart is whole and complete, when really it feels exhausted, broken, and bleeding.
When these things that I'm faking are expressed out loud, I simply feel inadequate. I feel like I lack the ability to ever be "good enough." I feel like it's my fault and if I just tried a little harder.... maybe my pain would subside. I feel ashamed of my own existence, and I often wonder why at times it feels like the world keeps turning while my time stops and I'm trapped in one place until my inward storm chooses to cease for a while. And as these feelings envelop me, the vicious cycle of feeling forced to "fake it" starts all over again.
We live in a society that believes that pain can be relieved with substances. We cope with alcohol, drugs, pills, porn, food, or anything we can do to numb our afflictions. But at some point, we have to realize that the SUBSTANCES DO NOT HEAL US. The substances numb us to the harsh reality. Instead of relying on substances, we can rely on God and on each other so we don't have to feel the desperate need to "fake it till' you make it."
LOVE is the key to healing. "For God so loved the world, that he gave his only begotten Son." (John 3:16) God loves us, so He gave us His son so that we don't have to suffer alone. Christ knows of our pains and our sorrows, and He loves us all the same. If we strive to be more like Him, we can act as a rock and relief for others who are suffering. We don't have to have all of the answers for the chronically ill. We don't have to take their physical pain away. But what we can do is seek to understand the depths that others and in, and then... we simply love them through it.
Here's the joyful message of it all... Because I have a Savior who loves and sustains me... I can find pure joy through pain and illness, and I'm not faking it. Because I know that people are more important than substances, I can understand that after I walk through my own furnace of affliction I develop the ability to love others through their afflictions. I also understand that as I suffer I gain a greater capacity to later help others which in turn helps me. What I stop trying so hard to fake it, I can be true to myself in enduring pain and happiness.
So the next time that you meet somebody, or the next time that you're talking to somebody... "treat them as if they are in serious trouble. And you will be right more than half of the time." (Henry B. Eyring) It would all do us well to bring our shallow existences to a halt. The next time that somebody says they are doing well and you sense that they are not, do not believe the words they speak. Believe the silent plea for help in their eyes. Believe their subtle look of discouragement and pure exhaustion. Believe that little voice in your head telling you that maybe this person needs help. Believe the inherent ability you have to love somebody through their pain.
We all have that power. May we seek with pure diligence to know how to help ignite that power in ourselves and in others.
For this post Chronically Beautiful teamed up with The Hello Lovely Project. The Hello Lovely Project exists to promote self worth in young girls and women illustrated through pictures and stories. In a day and age when women's contribution to the world is so often objectified and diminished, it's more important now more than ever that every woman recognizes her Divine worth. The heart of this project rests in the fact that women are so much more than what you see on the outside. Women are human beings that have hearts that pump blood and determination through our veins, lungs that breathe air and influence throughout our society, and minds that hold treasures of knowledge and wisdom that ought to be recognized. Every woman has Divine gifts and Divine worth that makes them absolutely amazing, and for some it's incredibly difficult to see the beauty and worth that lies within. For the Hello Lovely Project, we strive to let that truth penetrate the hearts and minds of women all over the world.
Let's face it... the years that we all walk as a teenager are always the most difficult, and my road to discovering my individual worth began here. Bottom line: I hated the mirror and I never felt like I was ever enough. I spent countless amounts of time in Sunday school lessons and seminars about beauty and worth and yet I couldn't quite seem to visualize in my head how it all applied to me. I was told time after time by my peers how I wasn't smart enough or how I lacked in one thing or another. Due to physical disability, I wasn't as quick to think on my feet as some of my friends were, which lead me to believe that I was just plain stupid. Stupidity was also implied multiple times through that sarcastic comment that rolled off the lips of my peers on multiple occasions: "It's a good thing you're pretty because you don't have much else going for you." Those words cut deep as I let them penetrate my heart and allowed them to affect how I viewed myself and my worth. For these reasons, I rotted in the belief that if I could look "perfect" then maybe I might have something to offer in the world.
At this time in my life, I spent a lot of time watching beauty "how-to's" on Youtube, and wondering why my hair never seemed as shiny, or my teeth as straight, or my lips as full, or my skin as clear as all the girls in the videos. How did they master this idea of "perfection" and yet no matter how hard I tried, I would never be enough. No amount of makeup or hairspray could help me reach the level of physical "perfection" that I could see in others. And yet I didn't pause a minute to strive for anything less than excellence in my appearance.
As you can imagine, living in a way that makes everyone else happy and comfortable with you can be very exhausting, and I often wondered what it would be like if I ever resolved to show up to school as someone who was comfortable in my own skin (without all of the extra makeup and hair care). The truth was that I couldn't ever get myself to take that step due to fear of what others would think. I was often told by women that "beauty is pain" anyway, so I figured that it was normal to never find true comfort in my appearance. The truth was that I never was comfortable in my own skin. I didn't like my own face. And I didn't want to think about what I actually looked like because my looks were seemingly "all I had to offer."
Let's fast forward to post-graduation and my first taste of young adulthood. How does one's self-worth play a part as a young woman attending college who had just been diagnosed with a debilitating disease? I was diagnosed with Lyme disease soon after I began college, and naturally, the obsession I had with looking perfect came to an end. I lost 15 pounds my first semester of college (keep in mind that I already only weighed 125 lbs and I'm 5'9" in height), and could often feel and see my spine, wrist and ankle bones protruding from under my skin. When I came home from college I found unnatural amounts of hair coming out in my brush and I remember standing in front of the mirror in tears as I'd pull the hair out of my brush to throw it away. I remember my face, neck, arms, and back very frequently being broken out in lesions and rashes that would itch and hurt to the point where I had a constant relentless urge to pick at my skin whenever I felt nervous or panicky.
Naturally, the makeup, hairspray, and the need for "perfect" appearance quickly vanished. Suddenly my drive to stay alive became more important than my desire to look like society's ideal woman. Naturally, I felt horrible about myself day in and day out. I was useless. I had to stay in a bed and participate in laborious treatments that frequently made me feel worse. What could someone with Lyme disease ever have to offer in a world that pushes work, education, money, traveling, exercise, and looking amazing while doing it?
Eventually, as I learned to find comfort in my own face and my own skin, I learned the answer to that question. I had to come to a place of acceptance in my life. Acceptance of who I am no matter where I happen to be or what I happen to look like in my life. A place where I learned that the worth of a woman has nothing to do with how she looks. The worth of a woman doesn't equate to how smart or stupid society tells her that she is. The worth of a woman isn't about what men or other women think of her. The worth of a woman isn't drawn based off of her abilities or her disabilities. The worth of a woman isn't determined by how perfect she can get herself and her life to look.
I didn't realize when I was younger that my worth comes from my heart, not from my body. To say that one's worth comes from their physical appearance doesn't make sense simply because the heat of life being turned up doesn't equate to the worth of a soul being turned down. If my body determines my worth, then when my body breaks down from physical illness I don't have any worth! I know now that this perception of 'worth" just isn't true. I suppose it's true that "beauty is pain" not because of eyebrow plucking and long hours of makeup application, but because my illness does not make me "less beautiful." If anything it makes me more beautiful because of the extra strength and resilience that is accompanied with all the painful aspects of Lyme. I choose to not let Lyme define me, and even though it's incredilbly difficult... it doesn't determine who I am or my worth. Every single one of us is blessed with innate worth and ability when we are born, and that worth doesn't merely vanish when life gets hard, or when we feel inadequate in various aspects of our life.
In God's eyes, every single one of us has an undeniable amount of worth. When I can see that my worth comes from God, then I can also see that my worth is enduring and eternal. The glorious message from that is that every single one of us has the power to take our worth in our own hands and create something beautiful with it. I never was stupid. I never was ugly. I never was useless. I simply perceived myself to be that way which held me back and made it so I was living way beneath my privileges.
I've always been beautiful, smart, and capable. I've always had something to offer to the world. It is so with every woman if they so choose to discover and realize their internal worth. God loves His children. God loves His daughters. That doesn't change because of things that others say or expectations of society. My hope is that all women can come to an understanding of who they are and the innate beauty that is instilled in there own hearts and souls wherever they may be in their lives.
*This post was inspired by #thehellolovelyproject. You can learn more about the incredible woman who started this project by visiting her "About Me" page here.
Do you want to get involved with this project? Here's what you can do!
Throughout my life, I've had the privilege of sharing my story with lots of different minds and hearts that I've met along the way. Putting the intense battle of so many various kinds of pain into words that are relatable to the average person always seems to be an arduous task on my part, and I frequently seem to receive the same message from people that don't know me very well yet:
"Wow, Claire... That's really personal." or,
"I'm surprised you just shared all of that with me... that's really personal." or,
"Wow... you've been through a lot."
As expected, these comments are usually accompanied with wide eyes, dropped jaws, and a look of bewilderment. It wouldn't surprise me if at times people read my blogs and think similar thoughts.
Now, don't get me wrong... I have experienced very valuable conversations with people about my adversities as well, and this isn't to say that I don't appreciate the chances I do have for listening ears and open minds to hear me out and answer my cries for help with love and compassion. Those people know who they are, and they are very much loved and have forever left handprints on my heart.
But for this particular post, I want to articulate to my dear readers why I'm so very vocal about illness and tragedies, and why I feel such a deep desire to share my story, even if at times it may sound terribly personal, or be overwhelming to listen to or read.
I recently came across this quote on a Facebook page I follow that is dedicated to spreading awareness for Endometriosis (something that I've struggled with for years). This quote really hit home for me personally and is partially why I felt inspired to write this post. Which brings me to my first reason for refusing to stay silent in the midst of suffering:
1. It took me a really long time to develop a voice, and now I finally have it. I vividly remember in high school I obsessively agonized over what people thought of me. I was the "perfectly well behaved high school girl." I couldn't stand it if a single hair on my head was misplaced, or if a single drop of makeup was smeared or absent. I didn't have enough courage to say what I thought most of the time, and when I did say what I thought I was usually ridiculed or quickly shut down by my peers or teachers. This subconsciously lead me to believe that being fake and keeping my mouth shut was the best option in most cases. That, or subconsciously believing that I was incredibly unintelligent at least kept me in a social standpoint where I never had to step outside of the status-quo unless I was around a trusted friend where I could finally just be myself.
All of these false beliefs turned out to be incredibly damaging to me as I grew older and suffered greater tragedies than mere harsh judgments from my peers. I reached a point where I truly believed that I was stupid and worthless, and it's been a battle ever since to remember who I am and why I'm here. About a year ago, I suffered tremendous loss in my life, and when that happened, something inside me finally woke up. Ultimately, I'm tired of pretending. I'm tired of being afraid. I'm tired of thinking that what I have to say isn't worth hearing. I FINALLY found my voice. And now that I have it, I'm not going to be silent.
2. Deep connection and inspiration don't come from silence. Here's something to consider: Why would all of us be put on this earth TOGETHER, to experience pain and suffering, if we were never supposed to talk about our experiences? Adversity and hardship exist so that we can learn, grow, and be inspired, but we were not meant to do that alone. If we were, we wouldn't all be here TOGETHER.
Everybody has a story that can bring tears to the toughest of people, but cold hearts and false beliefs are born out of silence. If I choose to stay silent about my suffering, I'm depriving someone else of the strength that they may not know exists yet. If I'm too afraid to share my story, I'm sending a message of fear to a society that is already riddled with fear and anxiety for the future. In order to understand and truly appreciate the light in life, you have to experience and understand the darkness. That's non-negotiable, but thankfully God blesses us with other people to help us to understand the darkness so we don't have to experience every ounce of suffering by ourselves. And through our pain and suffering, we can learn to succor others... which is my next point.
3. We're not meant to suffer alone. When I think back to the times that I've been bedridden for months on end, I've tried multiple times to pinpoint the worst part of it all. And I have to be honest... The worst part of Lyme disease and Endometriosis isn't the long nights of seizures, puking, and indescribable lower abdominal pain. It's not endless exhaustion, joint pain, and muscle pain. It's not panic attacks, depression, and fits of Lyme rage. The hardest part of chronic illness... is the isolation. I've had so many nights where I've felt like I'm the only one in the world who is suffering on such an immense level. I've felt completely and utterly alone as I've come to realize that while I'm fighting a disease, everyone else's lives are continuing on without me.
Nobody deserves to suffer alone. Almost 50% of America suffers from one or more chronic illnesses, and while the other 50% are near oblivious to the excruciating suffering of us warriors of invisible illness, we're fighting for our lives. Everybody needs help. Every one needs support. Every person needs compassion. We were put on this earth to help each other. We're put on this earth to experience pure love, but I truly believe that we cannot do that without experiencing hardship and being willing to walk the more difficult roads in life. If my story can bring hope, peace, or strength to even just one person... it's worth it to me. It's worth the vulnerability. It's worth the chance that I could be shut down or ridiculed by some. It's worth opening up and being personal. We all need people we can relate to. Silence cuts us off from that connection that we all need in order to survive this life.
This is why I refuse to be silent anymore. This is why I speak up and speak out. This is why I believe that we all need to be a little more personal... because connecting hearts and promoting comfort and healing is so much more important than feeding our fear and protecting our pride.
It's been about a year since I've written in my blog, and as I recently skimmed through some of my old posts I found tears streaming down my face and I wondered how I could have left such an immense and deep-seated part of my soul in the past. My heart resides in this blog, and shame on me for burying such a special part of me in the dirt. I've changed and experienced so much this past year, and I hope to be able to share new messages of hope and peace to anyone who is struggling with any struggle, whether it be an outward struggle, like an illness, or an inward struggle, like feelings of inadequacy and fear of the future. I hope whoever comes across this can feel overflowing love from God, and hope for better things to come.
I desire to focus on healing. But I'm not one to sugarcoat experiences, or pretend like my healing journey was comfortable and effortless. I desire to share the good and the bad. The beautiful and the ugly. The tears and the laughter. The suffering and the blessings. The miracles. The hope. All of these things together make up my healing journey from chronic Lyme disease. And yet, I still find myself battling this dreadful disease. It's simply a different battle than it used to be.
Lyme disease is a monster. Perhaps one of the scariest monsters I've ever had to face. At times I feel as though I fight a grueling battle, only to wipe the blood off my sword and prepare for the next battle. It's been brutal. But it's been worth it.
My healing journey began with my angel mother. Despite her own extended battle with Lyme disease, while I was at my worst she spent all of her extra energy and time on discovering new ways to help me heal. And it was her who studied for days on end about the protocol I was to engage in. Everybody deserves to have someone like my mother in their lives. Someone who fights with you every step of the way and doesn't give up on you, even when the nights get long and the days get dark. It takes courage and endurance to be a caretaker, but the best of people do it because their love for the person who is suffering is stronger than any disability or illness could ever be. I'll forever be grateful to my mother for being that love that I needed. That love that helped me to find answers.
I woke up on my first day of treatment with a deep seated fear, but also a renewed hope. At the time I felt like I had reasons to fight. I was fighting for my future family. I was fighting for my Heavenly Father. I was fighting for all the people who suffer from Lyme disease and feel hopeless. I was fighting for my mother who has suffered twice as much and three times as long as I have.
My treatment was a seemingly simple detox therapy. The theory of the protocol consisted of killing the bacteria, bringing the bacteria to the surface of your body, and then sweating it out through your skin, which would then later be washed off in the shower. This happened in a step by step process that I completed every day for two months. My morning began with a protocol that would specifically target the Lyme bacteria, and kill as much of it as it could in one shot without killing me. I'd then orally take a specific dose of niacin and other supplements, followed by 30 minutes of exercise. The excersise would then induce what is referred to as a "niacin flush" which means that my entire body would light up bright red, bringing the bacteria in my body to the surface, which then puts my body in the perfect position to sweat out all the toxins. I would then spend the next hour and a half to two hours in a infrared sauna, at approximately 131° sweating, hurting, burning, and detoxing. The treatment was then completed with a quick shower, and spending the remainder of the day feeling weak, exhausted, and achy.
Ultimately, this treatment was a miracle in my life. But there's no denying that while I was suffering through it, I questioned whether or not it was worth it. I recall days where walking on the treadmill seemed impossible. I have memories of passing out and throwing up at random. I remember times when I felt as if I were enclosed in a box and experienced panic that comes from feeling like your air is being taken away from you. I remember the burn that came so fiercely across my skin. The kind of burn that feels as though there are tiny shards of glass embedded in every pore of my body. I recall the heartache and the tears, and the desperate waiting and watching the clock. The glorious mental relief that came when the timer would go off, signalling that treatment was done for the day.
We sometimes see healing and miracles as things that are easy and painless, but I can't say that's always the case. And if it were, we wouldn't ever have the divine chance to learn the crucial and vital things in life that we need to learn in order to overcome our greatest pains and suffering. Painful healing is sometimes necessary for the growth of one's soul. I was blessed with the glorious opportunity of a significant amount of healing from the plague that is Lyme disease. After two months I found myself with renewed energy. My pain slowly became less and less. My strength increased little by little. Even things like my face, hair, and skin seemed renewed and glowing towards the end of this era. It was nothing short of a miracle and I will forever be grateful for all the loving hearts and hands that supported me through such a crucial time in my life.
So to anyone who feels as though no matter how hard you try the more painful it seems, I encourage you to hold on. Because God may be healing you as we speak. Soul stretching moments of healing aren't supposed to be easy. But they're always nothing short of a miracle. There is always hope for healing. There is always light at the end of the tunnel. The day will come when we will all find healing from our seeming brokenness. The peace in the meantime comes from knowing that we're not alone, and that we have a loving God who's hand is divinely guiding us through it all. It's critical that we don't lose hope.
I've found that trauma and emotional anguish, over exertion, and a failure to continuously practice healthy living feeds Lyme bacteria. I've found that my greatest desire is to be made COMPLETELY whole, but I've also learned that that may never be a reality in this life. Despite all that, despite feeling like I've been pushed a little backwards, and despite that life is hard sometimes, I have a renewed outlook on life. I have a new perspective that helps me to see the beauty, the healing, and the mercy in life. My prayer is that we can all find that in life, even if at times that entails pain and discomfort.