"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!
It's no secret that the community of people who suffer from chronic illness and disability is in an uproar due to the rash and erroneous statements made by Dr. Phil on Tuesday, March 12. In this episode, Dr. Phil claimed that "100 out of 100 relationships that involve care-giving fail. You can be a caregiver or a lover but you can't be both." I've never seen a more beautiful response than from the #100outof100 that's trending on Facebook and Instagram, and as a young, single, chronically ill woman myself, it may seem that I'm not qualified to have any opinion on this topic at all. But, I'd like to offer a fresh perspective to the community and to overall society. Everyone may be appalled by Dr. Phil's statement, but how often does society and communities all over the U.S. actually treat the chronically ill and disabled this way? Thank you, Dr. Phil, for saying out loud what most people think, but would never make audible. Your statement is currently bringing to light the attitudes of many and states that this is a social and cultural mindset that needs to change. Well, this is my perspective, and if you read all the way to the end, you'll find that I may be more qualified to discuss this topic than some might think.
My parents were married in the year 1980, and my mother was diagnosed with chronic Lyme disease in the year 2013. It took years for my mother to receive a diagnosis, which means that there were 33 years of unresolved health problems and 39 years total of disability and struggle.
On my parent's wedding day, my mother was eminently sick, and that was merely a taste of the next 39 years for them. I don't ever remember a time when my mother wasn't sick. My mother is the best mother I could have ever been sent to because despite chronic weakness, fatigue, and unexplained neurological symptoms, she successfully raised six kids in a happy and healthy home who are now thriving adults in society. It wasn't until I came along that symptoms became less tolerable and more abundant with time. As a teenager, I remember my mother often being bedridden throughout the winter months and hospitalized frequently. It didn't make it any easier that my parents had me, who seemed to always be sick with strange and unexplained symptoms, and the frequent doctors appointments for both of us almost never left us with any answers or hope to someday receive answers.
It wasn't until I was a junior in high school that my mom went down for the long run. Her pain levels were excruciating, she would often suffer from spontaneous seizures due to the high levels of physical pain, and she experienced pain so deep and severe that I often wondered what happened to my mom because she wasn't the same person when she was this ill. She was bedridden for years, she lost her ability to walk and was in a wheelchair for awhile, and again... there were no doctors that had any answers to give us other than that there is no illness with all of her symptoms.
Right when life reached it's peak of pain and discouragement, right when most people would leave and surrender to it all, right in the middle of no improvement, and right when a large majority of people would leave... my dad chose to stay. There wasn't a life to be had. There wasn't a possibility of going to work, or church, or anything else that an average man would do because when mom went down, my dad took his rightful position as husband AND full time caretaker. The position he promised he would take the day that he married her.
I've watched my dad care for and love my mother through this awful disease for years, and he isn't planning on stopping anytime soon. I've watched him feed her, push her wheelchair, and peel her off the floor after she's passed out or after a seizure. I've watched him drive when she lost her ability to. I've watched him take over the cooking and cleaning when she lost her strength to do it herself. I've watched him do what any real man would do when the love of his life is put in a situation like this. Because why would you trust a stranger that you pay for to take care of the person that you love and cherish more than anything in the entire world?
True love has absolutely nothing to do with physical ability or lack there of. True love has everything to do with two hearts and souls that would give and sacrifice ANYTHING for the well being of the other person. And if both people in the relationship have that mindset, then both people are thoroughly taken care of. My mother has always been a help-meet to my father. And when she was able, she was always by his side, helping and supporting him in all of his endeavors. My parents set out to be a team from the very beginning, so when they were brought to a point where they had to walk through the fire, they walked through it together without being burned alive.
Not only did my father have the task of taking care of a sick wife, but he also is frequently met with the task of taking care of a sick daughter as well. My small family of three pulls together in our house, and through sweat and tears, we take care of each other, no matter how difficult it gets. Often through the fire of chronic illness, I've so frequently been shut down by others, which is why it's crucial to have a family that is your full-time caretaker.
We live in a society where the breakdown of the family is dominating and the definition of love is becoming increasingly shallow. As a young single person, I watch many healthy young people searching for someone who can be their eternal companion, and basing their decision on how much fun they can have with a person, and how pretty looking they can appear to be together. Why would you need to take care of the person you love when you have doctors, therapists, physiologists, bishops, and pastors doing it for you? Wouldn't it be easier to hire somebody who is a qualified "expert" because they learned about it in a textbook once when they were in college?
The answer is no because true love has nothing to do with how good you can look on Facebook, and often the experiences that cultivate the greatest love are not shared on social media. Often the experiences that cultivate the most love are dark, scary, and require sacrifice. Cultivation of love is often brought on by those experiences that open your eyes to how much you would miss that person if you lost them.
I'll never forget the comments I've received from people towards the men I've dated about how wonderful a man he must be because he's willing to be with "someone like me." I often wonder if the person that told me that "it makes sense why no one would want to be with me" is right in some ways. And I often think of the many men that frustratingly have asked me what it would take to be with me because they don't think they could do it.
What all these people are forgetting is that love is patient and kind. Love is not skin deep but is something that penetrates into the heart and soul of two people who would give anything to be together. What happens when that "perfect" husband or wife becomes paraplegic, or chronically ill? Has our society come so far as to say they won't love another human soul unless there's a guarantee that everything will stay easy and comfortable all the time? Because if we've come that far, then society is seriously disintegrating before our eyes. No wonder there are so many incredible disabled women I know that feel like they're destined to be alone.
As a chronically ill single girl, I know my worth. I know my mind and heart have more to give than a lot of people who are physically able and strong! And I know that there are thousands and millions of chronically ill people out there who are worthy of love because the love that they have to give is the kind of love that lasts into the eternities.
When something is broken, you fix it. You don't throw it away. When you choose to love someone who is broken, the brokenness heals. Because doctors and "experts" cannot heal you. But love can. It is possible to love at maximum capacity while coping with disability and illness. May we all choose to see that in whomever it is that we come to love someday.
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.
Stay in bed and cry all day, and you're not trying hard enough.
Show improvement and look beautiful, and you're not actually sick.
Share your terrifying reality with others, and you're seeking attention.
Keep to yourself and pretend that everything is okay, and you're not actually sick.
Smile, and you're not in pain.
Cry, and you're in more pain than the people around you can tolerate.
I've found myself spinning this dizzy cycle in my head lately and trying to understand how I'm supposed to act and feel as someone with a chronic illness. I've found myself listening to the discouragement that comes from this vicious cycle from other chronic illness warriors. And I've seen lots of posts on social media expressing the same concerns in attempts to understand what exactly we're supposed to look and feel like as chronically ill people.
Unfortunately this perception that other people can sometimes give is frustrating and causes a lot of guilt and an unnecessary inward struggle. I often put extra pressure on myself because apparently there is a certain "look" that chronically ill people have and if we don't fit that particular "look" then we're not an acceptable sick person. The irony of that is that nobody actually knows what that "look" is. They just believe that it's different from whatever vibe we're giving off.
I believe this pattern can be found in any kind of misunderstood suffering. If you haven't been through it yourself, you don't understand, and while it's okay to not understand, it's also important that we increase our love and compassion towards that level of suffering because generally, the person is already suffering enough without that extra pressure. We don't need to put that pressure on ourselves or others because the reality is that PAIN AND JOY CAN COEXIST, and it's okay!
Your Traumas Don't Define You
"I don't want to be known as the sick girl."
I remember having that thought when I was at my worst. I remember feeling extreme frustration from my desire for people to offer extra love and kindness that I desperately needed at the time, but also to know that there is more to me than Lyme disease. It seemed to me like I couldn't have both and I remember feeling like I was never enough because I was now some disease that controlled my entire life and trashed my hopes and dreams for my future.
Fortunately, that was never the case at all, and I've since learned that it's not your traumas that define you. I have Lyme disease. That doesn't mean I am Lyme disease. Your traumas, afflictions, and adversities in life are there to shape and refine you into the person that God intends for you to be. They exist to soften you and shape you. It's through the furnace of fire that we become flexible and transformed into something beautiful. The piece of coal that never had to undergo heat and pressure was still just a piece of coal in the end. We may come out with a few burns. We may be wounded. But we're not eternally broken or stamped with our eternal label. Nobody comes out of this life with a big stamp on their forehead that states their largest trauma.
It's not our traumas that define us, but how we choose to respond to those trials. And sometimes our response is a day in bed or a day in tears or simply doing the best we can do at the time, and that's okay. And other times that response is laughing through the tears and smiling through the heartache, and I've learned that those days are often some of the best days. Some of those days are the days that we learn important life lessons that change us forever. On those days there is no "look" that I feel the need to have. It's just me in my most raw form, and sometimes that form is exactly what I need to be in the moment.
A friend once told me that it's okay to cry. It's okay to stay in bed for a little while. It's okay to be debilitated for a moment. Just don't freeze. The joyful message is that even in moments of pain and paralysis, we don't have to freeze. We can continue on to the best of our ability with hopeful hearts. Our best efforts are always counted in the sight of the Lord, and when we're given that knowledge, we don't have to submit to all the views of other people. When we press forward the best we know how in our adversities, we can come to a place of self-love where we can be happy with our own state of being, whether that be in tears or in laughter.
How is it possible for joy and pain to coexist?
I've often found in life that opposites can regularly coexist. I've found that I can make a list of things I love about myself, while simultaneously making a list of things I hate about myself. I've found that I can be in pain and still find things to smile about. I've found that even when I feel hopeless, there's still hope in the journey.
How is that possible? How can pain and joy exist at the same time? That phenomenon is made possible through a loving God who keeps His promises, and a Savior who was sent to succor and sustain us when we can't manage to sustain ourselves.
First, God promises us that ALL trials come to an end, even if the end isn't seen in this life.
John testifies in the book of Revelation of the people who "come out of great tribulation and have sanctified themselves... that God will wipe away all tears from their eyes." (Revelation 7:14-17)
He then later testifies of God's people and how "God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain." (Revelation 21:5)
And then there is our Savior, who He Himself declared at the end of His sufferings: "It is finished." (John 19:30) There will come a day when every single one of us will be able to declare that "it is finished." Our sufferings do come to an end, not always through death, but through healing and enabling love and power made possible through Christ.
That fact alone is something to rejoice about.
Second, God consecrates all of our afflictions for our good and promises us that our glory in heaven will be returned twice as much as our suffering on earth.
Peter tells us that the trial of our faith is more precious than gold. And "although we may be tried with fire we can be found unto praise, honor, and glory at the appearing of Christ." (1 Peter 1:7)
He then later tells us to "think it not strange concerning the fiery trial which is to try you, as though some strange thing happened to you: But rejoice, inasmuch as ye are partakers of Christ's sufferings; that when his glory shall be revealed, ye may be glad also with exceeding joy." (1 Peter 4:12-13)
God reveals to us in those words that we can REJOICE during our fiery trials. That does not diminish our pain. That doesn't say that we're not actually suffering on such a horrendous level. That doesn't tell us that we're not allowed to feel our pain because that's a sign of weakness, and we lack faith if we feel pain. It declares to us that suffering isn't a strange thing to our Father, and He understands, and He promises hope for a better future. We can be ourselves, and we can find joy in the moment. Not the kind of joy that promises no pain and tear-less eyes, but an inward joy that declares in our hearts that this too will pass.
It's okay to look like you're struggling. It's okay to look happy and beautiful. You should absolutely share your reality with others, and if you feel the need to fake it until you make it then that's okay too! It's okay to smile when you're in pain, and it's okay to cry in front of people even if it makes them uncomfortable! Life is full of ups and downs that we were meant to experience. And as we become accustomed to pain, we are granted the blessing to experience joy, even in the midst of suffering.
Thank goodness for a merciful God and Savior who loves us through it all.
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
The holidays are meant to be joyful! Thanksgiving is a time to reflect on blessings throughout the year, and a time to express gratitude to loved ones and to our loving God who blesses us with more than we deserve or comprehend. So if that's true, then why does it simultaneously seem like the holidays are a time of mourning and grief for so many individuals who have suffered a loss of some sort? Why does a heavy heart often creep into our celebrations and merriness?
Suffering is a universal concept. We've all experienced loss in it's many relentless forms:
The loss of a job or an opportunity.
The loss of a loved one through death.
The loss of a loved one through betrayal, or simply the choice they made to leave.
The loss of health and therefore, quality of life.
The loss of hope that there is happiness and joy in the future.
At times the amount of loss in life seems unfair and insufferable.
The holidays are the time when it seem like our losses should return and magically reappear so the holes in our hearts can be filled for that short period of time when we're "supposed to be joyful." I often find myself wishing for the holes in my heart to be filled once more just for the holiday season... but life doesn't work like that. Instead we must find a way to fill those holes with new reasons to rejoice. This year I've found that obtaining a thankful heart might just be a tool in our toolbox to finding joy despite our grieving hearts or pained bodies.
When I was at my darkest place in my illness, I didn't believe that gratitude could change anything, and I often went about my day filled with bitterness and resent for people who were blessed to live their lives pain-free. Being thankful for what I have would do absolutely nothing in relieving my physical pain, so why should I try so hard when I felt I had nothing to be thankful for? Why should I try so hard now when my past pains often burden my heart in a way that seems unbearable in the moment? Gratitude will not take the PTSD from my nerves and mind. Gratitude won't make my heart any less heavy. Gratitude won't take my past or future flares from occurring. So does it matter at all?
The answer is yes! Practicing and expressing an attitude of gratitude and thanksgiving changes you. Allowing thankfulness to envelop your heart and senses can be the difference between having a happy holiday and having a hollow holiday. Will it relieve all of the pain from the injustices of life? Of course not, but it will take the edge off in a way that gives you the power to endure the pain, and endure it well. A thankful heart often reminds us that there's always a reason to keep going, even if your circumstances are less than desirable.
With that said, there will always be times when gratitude will seem unreachable.
I didn't feel thankful during my panic attack today.
I didn't feel thankful during my endometriosis two weeks ago.
I didn't feel thankful when my heart pinched with pain when I was reminded of the loss of someone I love on Thanksgiving Day.
So what? Do we throw the towel in and quit? NO! We recognize that we're not always going to be happy, and allow ourselves to feel our pain. We then get up and trek onward with hope in our hearts for a better future and faith that God will give us the strength to endure. And when we feel like we can't even do that, we plead with our loving God and lean on His strength and gratitude until we can find it in ourselves. God is waiting to help us hold our burdens, we simply have to ask to put it in His hands for a time.
I'm not going to pretend to be the expert on gratitude. I'm not. But I invite you to take time to write five things you're thankful for everyday. IT WILL CHANGE YOUR LIFE. I never knew I had so many things to smile about until I took a little time everyday to be thankful. Even if you can only find gratitude for the chair that you are sitting in, it is more than some people have. So take time to feel and express gratitude. It may not take your pain, but it will transform your pain into something beautiful.
This year I'm thankful that the years past are over and that I don't have to live in that consistent darkness anymore. I'm thankful for the health I do have. I'm thankful for the people I've lost so that God can heal and open my heart to new people that I can love. I'm thankful for life, breath, and hope that my Savior, Jesus Christ, instills in my heart if I allow Him too. There's always something to be thankful for... we simply have to take time to see it.
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.
A couple of years ago I found myself at the bottom of a gorge, lacking safety ropes, climbing gear, or harnesses of any kind. I sat with my back up against the steep cliff that was before me, and with a loss of breath and words I struggled for a desire to want to look up at the daunting task before me. That steep, unforgiving cliff was my only way out, I knew it and I didn’t want to except it.
I’m not sure how I got there. I’m not sure if I merely tripped and fell over the edge due to an exorbitant amount of overwhelming life circumstances, or if some insensitive person had simply caught me off guard from behind, and gave me a swift push. All I knew was that I was sore, exhausted, and I felt as though the walls were closing in around me. The hot sun beat against my skin as if it were mocking my very existence, and the hard ground lead me to realize that staying in one place wasn’t giving me any easier of an answer.
I managed to pull myself to my feet, and brush off my shorts and t-shirt that were coated in a layer of dirt and dust. I posed my hand to my forehead in attempts to shield my eyes from the sun, only to find a large, bloody gash in my forehead that made me now understand why my brain felt like it was pulsing beneath my skull.
I looked up in the direction I knew I needed to go. It seemed like miles of hard rock, scraped hands, and fairytale destinations. I could see my parents scaling that same cliff miles above me. They had begun this journey long before I had, and to be frank I didn’t know how they were still managing to pull themselves upward. It seemed like the impossible task, and I questioned whether the end goal was really worth it or not.
I resolved to begin my climb. I walked up to the menacing rock wall, placed my palm in a small indent in the side of the cliff, and dug my fingers around it in an attempt to obtain a sturdy grip. I placed my foot in a sufficient gap for a foothold, and pulled myself upwards. So far so good. I continued this pattern for a couple of arm-lengths worth of rock wall before my fingers slipped off my indent, I lost my footing, and fell mercilessly back down to where I started. My skin felt like it had been torn off around my palms, arm, and knees, and my head throbbed even harder in defeat.
Keep in mind that I’m not the type of person to quit while I’m ahead. So of course I got right back up and tried again. Grip, footing, pull! Grip, footing, pull! I never quite got the hang of it well enough to reach a certain destination without tumbling a few inches downward, but after a lot of sweat and perseverance I managed to pull myself up by my parents who welcomed me as we began the rest of the journey together.
Throughout my journey, I had a lot of interesting experiences. I ran into a lot of loose rocks, and unforgiving tree branches. Avalanches and rock slides. Tears and feelings of hopelessness. And of course wishes that I wouldn’t have to do this anymore. Just when I thought I was almost there some kind of obstacle left me scraping my skin down a few inches of the cliff. I also discovered various tips and tricks from my dear parents and the reasons why they were still holding on for dear life. Those lessons I learned helped me to keep going, and helped me to realize that now was not the time to surrender to that demeaning wall of rock.
Now, on this very day, I’m still gripping the side of that cliff. I’m so close to the top where I will find my way out of this horrible place. But I still have quite the climb, and throughout my journey I have discovered my will to live, the people I love the most, and the power that keeps me pulling myself upward.
Of course, I haven’t been scaling a million mile cliff for the past two years of my life!
What I have been doing is fighting a horrible disease that is highly analogous to that of scaling a cliff that seems to be miles high, and undefeatable.
My life’s mountain is Chronic Lyme Disease, and I intend to someday reach the top.
My lack of climbing equipment is comparable to my lack of doctors, health care, and treatment options for Lyme disease. No medical professional seemed to have the answer for me. No medications, no pain pills, no belief in the medical industry that Lyme disease even exists! My Lyme equipment merely didn't exist in the beginning.
That gash on my forehead and sun beating down on me is equivalent to all the headaches, joint pain, nausea, vomiting, seizures, excruciating abdominal pain, vertigo, fatigue, limited energy, and so many symptoms that began the long spiraling journey that assisted in my arrival in that gorge in the first place.
Those trees, rocks, avalanches, and rock slides that kept slipping and slapping me down, limiting my upward progress, are comparable to all the people that have told me that I’m crazy. All the people that tell me that I’m doing this or that wrong, or all the people that don’t believe that I actually have any problem at all, and all the people that continually push me down and hurt me more when all I’m trying to do is my best.
The journey up the side of the cliff that my parents made before me is something that I will always be grateful for. It is my mother that found safety equipment along the way. It is my mother and father that grabbed me by the hand, and pulled with all their might and found answers to help me through my difficult journey. It is my mother that gave me hope in the most difficult of times, and has lead me in my healing journey.
The higher I climb on my mountain, the closer I come to healing, and now I’m almost there.
It was around December of 2016 that I began to realize my swift turn around. I realized that I was hundreds of miles from where I started, and I was beginning to see the glorious blessings that God was blessing me with all along the way! I discovered love and healing, peace and comfort, hope for my future that I didn’t think I had. I’m beginning to see the light at the end of the tunnel, I just have to keep climbing.
This is what chronic Lyme disease feels like. It’s like scaling a million mile high cliff with no safety gear. It’s like falling over, and over, and OVER again and hoping that eventually you’ll reach the top!
Lyme disease is a rough journey. I’m EXHAUSTED! There are days that I don’t want to keep climbing. There are days that it would be easier to quit, but I just can’t. It’s interesting how you begin to discover love and healing, and you begin to see your future incredibly clear, and your will to live comes back. Healing always leaves a lot of room for hope.
A wise man once said, “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. (Jeffery R. Holland, 1999)”
I believe that now. There is always light at the top of your climb. God does not leave us to suffer alone. God does not leave us without answers. God is always with us to offer us help and happiness ahead. That alone is enough to make me want to keep going.
So whatever you do… Don’t you quit. You keep walking. There is ALWAYS help and happiness ahead.
I feel as though I'm walking on a tightrope with me on one end, and all of my possible dreams for the future on the other. As I carefully force my aching and trembling body to take one careful step at a time, there's this constant fear that nags at the back of my neck that someone, at any given moment, is going to walk up behind me and push me just enough to send me plummeting to the deepest depths of despair. Thankfully that hasn't happen yet. I'm still carefully placing one foot of my broken body in front of the other, and with that I slowly get one step closer to fulfilling my dreams, even if they are miles and miles away.
My entire life all I've wanted to be is a wife and mother. Ever since I was old enough to know what marriage was, I knew that was where I wanted to be "when I grew up." I envisioned my future husband, my future children, and my future home centered on God, love for Him, and love for each other. As I grew up I would make lists of things I would and wouldn't do as a mother, and lists of what my husband would be like. I would look at picture of homes and decide what I wanted mine to be like. I watched my mother raise all of my siblings, and me, and I took careful note of the loving and beautiful way she treated us, and her husband. I took careful watch of my dad, and how he treated my mother, and I took mental note of how I wanted my future husband to be "just like that." My vision was clear, and every decision I've ever made in my life has been conducive to that dream. That's all I've ever wanted. I believe that the amount of money you make does not determine success. My belief has always been that success is discovered through family, and the love and fulfillment that comes from having one.
The day I got diagnosed with Lyme Disease, was the day that all of dreams went flying out the window and off into a distant existence where I could no longer reach them. It was the day where I began my endless basket of questions for the future, and since then it's only gotten bigger and bigger. I don't know if my dreams are reachable at this point. And it scares me to think that I'll never be able to be the woman that an amazing man gets to come home to everyday. It scares me to think that I'll never have those babies that I'd get to raise and love. It scares me to think that my home centered on God, will never be.
I have other dreams too. I've always wanted to open a vocal studio. and give to children the incredible miracle of music that my first voice teacher gave to me. I've always wanted to write a novel. One that inspires and uplifts the human soul. I've always wanted to take my voice, and perform with the objective to uplift and inspire peoples lives. I've always wanted to learn how to cook. I've always wanted to become a teacher. I've always wanted to be the perfect homemaker and continuously develop skills that would make it so I could do that. I've always wanted to be someone. I've always wanted to help people.
But how will I ever reach such a far away destination when I'm stuck at home in bed, suffering so bad that I don't even know if I'll make it out alive?
I don't know the complete answer to that, but I'd like to try and answer it anyway.
.Chronic illness is something that you take one minute at a time. Not one day, one week, one month, or even one hour, but one minute. In fact, there are some days that I feel as though I'm taking it one second at a time. And with each precious pain, anxiety, and stress free second, I count that second as a blessing given to me from my loving Heavenly Father. Every piece of strength I manage to muster at any moment I consider a gift from God. I can not do this alone, and I'm grateful that God is always with me.
In every battle, there is always a secret weapon. My secret weapon in this battle is faith. Faith keeps me fighting, and faith keeps my hope for the future. I keep telling myself every moment of the day that I have to keep my faith. Faith that I'm going to get better. Faith that I can fight this and come out stronger. Faith that God is always with me. Faith that God can heal me. Or even faith that I won't be healed, but that I'll find a way to live happily, despite my broken down body, mind, heart, and soul. Without my faith, I am nothing, and my hope that I am so desperately trying to obtain slowly vanishes into thin air.
Some days I have faith that I'll get better, and other days I feel hopeless and despairingly distraught. I look at it this way. Every day I try to do at least one thing that brings me joy. Even if it's microscopically small. If I successfully accomplish one small thing, then I'm not finished yet. Lyme hasn't won yet, and I don't intend on letting it. This trial in my life is incredibly hard, but I want to stay strong. I want to fight this battle, and I want to win. I'm exhausted in every sense of the word, but I can't give up. I just can't.
I'm so grateful to my Savior for giving me the strength I need to continuously fight this. I'm so grateful for the support that comes from my family and others that I hold close to my heart. This is a lonely battle, but knowing that I'm never completely alone is extremely comforting. I'm not giving up yet, and even though the tears streaming down my face scream fear, anxiety, and hopelessness for my future, my faith says otherwise. I intend on keeping my faith in the present in order to dispel my fear for the future. I'll still have my home, my husband, and my children. It just my be a little different vision that I had before. The important thing is that the vision I had of endless amounts of love that takes place in my future will not change, Lyme or no Lyme. In times of fear, my faith will always come out conqueror.