Disclaimer: The information provided is for educational and informational purposes only, and is made available to you as self-help tools for your own use. This is my personal experience, and I do not claim to be a doctor or any other medical professional and this article should not be used as a replacement for professional medical advice. All and any information given is for the purpose of sharing information to help you help yourself, and not for me to take on any other role as any health professional.
I've rolled these thoughts and experiences over in my head hundreds of times in an attempt to put words to such an experience. I've pinched and prodded those memories in the back of my heart and mind that I've tried so desperately to forget in the passing of time. And yet I can't manage to put words to it. There are no words for such pain. There are no words that could manage to make anyone who hasn't been through it themselves to quite understand the depths of the pain, and how it's left scars that I work so hard to heal on a daily basis. My story seems to become slightly more dark and scary when you reach into the bits and pieces of my illness that are endometriosis, and I've never managed to put more than a sentence or two to it before the topic is quickly changed or an instant assumption is made. I suppose the reason why I write this today is because it's time for those moments of awkward silence and assumption to stop... because any kind of chronic illness that destroys lives is something that should be talked about.
Everybody needs a safe space to talk about their life's anguish... and it's okay to be that safe space for someone. The more you know about these things, the more you'll be able to provide that safe space that somebody so desperately needs.
I've shared my Lyme story hundreds of times. I experienced strange and unexplained symptoms my whole life. I spend two years of high school worrying about my sick mother who has Lyme. I went to college, was diagnosed with Lyme myself, crashed, came home, and began my seemingly endless road to healing. Simple enough right? I had all the usual Lyme symptoms. I felt like I couldn't function. It was really hard. But the one thing I've never talked about is the endometriosis symptoms, and how those days and nights are the days and nights that haunt me the most.
"It's just cramps. All girls have cramps."
"Are you on your period again?"
"You went home from school for that?"
"Let's be honest Claire, you're not the greatest at handling pain."
All these comments were thrown at me so many times in high school and that I often felt embarrassed and ashamed for existing in a female body. If this piercing pain that brought me to my knees in tears and sent me home from school was so normal for so many women, then how come I never saw other girls on the floor gasping for air because of its excruciating nature? How come other girls didn't stay home every month? How come I was the one girl in the world that had pain that was THIS BAD? I couldn't understand how this was normal or how anyone could live with it. And I often felt confused when all doctors could tell me was that I was young and that it would even out. It never did.
"What does your pain feel like?" is the most common question that I receive, and I think it's about time that somebody finally put words to this kind of pain:
It's like someone is squeezing one of your organs as hard as they possibly can, only to slightly release their grip and then repeat the process over again.
It's like knives being pierced in and out in multiple waves.
It's like someone taking sandpaper to your lower abdomen.
It feels like something is trying to pull your hips out of socket and like your legs are going to give way at any moment.
It's like being in full blown labor for three to five days, every month, for the rest of your life.
Don't believe me? Spend one month in my body and you will.
The first time I experienced pain so excruciating that it caused me to have a seizure was one of the most frightening days of my life. It was as if I could feel my body deciding to check out from this dreadful existence, but not enough to kill me. I spent seemingly endless amounts of time on my bathroom floor with my head over the toilet because when your body is in that much pain, you can't manage to keep anything down. The nightmare just continued as I found myself in a position where I couldn't walk across a room by myself, but simultaneously I couldn't lay in a bed and wait for the pain to gradually increase anymore. I remember my dad would help me walk around the house through these flares because walking was slightly less painful than laying down which placed all the pressure where the pain was. There were so many nights that I prayed for the sweet release of death, and I often wondered if I was destined to do this for the rest of my life. I remember screaming to just rip it all out and make it stop and I often felt like I just couldn't do it anymore. I would beg every month... "Please... not another month of this..."
What I Didn't Know vs. What I Know Now
I didn't know that people actually lived like this. My lack of awareness for how dark and frightening life could be is astonishing. I didn't know that I'd ever heat bath water so hot that it burned because I was so desperate for pain relief, and I never knew that all the medications that doctors prescribed wouldn't work, and I never knew that this existence was something that one in every ten women experience on a constant basis. Pain changes you, and it changed me with every flare, every month, every day as I fought to remain sane through it all. I didn't even know that PTSD could come from physical pain, but now I find myself trapped in flashbacks every month, wondering if one day that level of excruciating pain will come back.
I didn't know that doctors would treat me so badly as if it were all in my head. I chose to go natural. I chose to say no to medications, birth control, and painful surgeries that are no guaranteed cure. Why would anyone want to listen to any medical professional that treats you as if your pain is all physiological and that ibuprofen and an anti-depressant will solve it? I didn't have the option of medications because I found that the more medications I took, the more Lyme symptoms would appear. Why would I trade one symptom for another that is equally as painful? Why did this road seem like this endless pit of options without answers?
What I didn't know then was that endometriosis and Lyme disease have a direct correlation. One can feed the other, and my endo battle had everything to do with my Lyme battle. Once I learned that truth, a wealth of knowledge seemed to pour down on my family as we learned a multitude of facts about Lyme and endo.
We learned that Lyme disease feeds parasites in your system (including in your uterus and ovaries), and those parasites and bacteria in your uterus can then cause endometrium growth, lesions, heavy bleeding, and insanely painful menstrual cycles. We learned how hormones play into illnesses like this, and how balancing the hormones can help balance the body, which will then reduce pain. And we learned that removing your uterus or painful excision surgeries can cause major damage to your immune system and the rest of your body. And with that knowledge, I figured that if I can get rid of the Lyme, I can get rid of the endo. I didn't know at the time exactly what that meant, but I did know that I had to try everything in my power to retrieve my quality of life back, and if that meant doing every "crazy" natural protocol out there, it was worth it if I could keep my uterus.
And so I proceeded with as much courage and strength that I could muster, and after years of constant struggle and perseverance, I am where I am at now.
Where I'm at in the Endo Battle Now
I believe that we live in a society that promotes instantaneous solutions. Instant gratification, instant entertainment, instant relief from discomfort, and instant healing. That's a nice thought, but life is not always meant to be instant and easy, and it was and is far from easy for me, but I know that I'm doing the right thing. I spent years gritting my teeth through the pain, and hoping that something we were doing was working. I spent so many dark nights wondering if I should just give in and take it all out. I ran images in my head of downing an entire bottle of pain pills because I was desperate for relief. I spent nights in tears thinking that my dream of having children would never come to be, and I now spend many a day in tears because the memory of those excruciating days and nights haunts me.
With all that said, the battle has been completely worth it. Currently, my pain is still there, and it's still difficult, discouraging, and arduous at times. My life still revolves around the menstrual cycle and I often find myself having to reschedule plans, or not make them at all because I know that an endo flare is coming. One of the most difficult parts of it all is having to explain to people how I know when a flare is coming, and then watch the frequent blank stares and speechless mannerisms. There are still difficulties, but the differences are miraculous and I find myself filled with gratitude for the immense progress.
I no longer have seizures and I no longer find myself in pain that is so severe that it brings me to my knees in screams. I no longer spend three days out of every month throwing up. I no longer question if I'm finding the right protocols because I can feel them working inside me for the better. My healing may not be instant, but it is effective. And along the way, my pain is necessary because the things that God teaches me through all this pain often leaves me in awe.
The reality is that God is greater than all of this. He's greater than any pain, heartbreak, or agony. He's greater than the devastating plague of Lyme disease. And when I find myself forgetting His greatness and love for His children, I grasp onto the fact that He's brought me this far... and He will not forsake me now. There are trials in life that are beasts, but God can and will bless us to stand still in His miracles and glory, and in turn, we will find ourselves experiencing miracles of healing and hope in places we never thought possible.
There may be no words for the full extent of pain and suffering from endometriosis and Lyme disease, but my attempted words will rest here in hope to bring light and hope to the woman on her bathroom floor screaming, because you're not crazy, and it's very real, and through it all, you are never alone.
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