Waking Up With A Chronic Illness
“One early October morning in 2013, in my college dorm, I woke up with a chronic illness. Of course, I didn’t know that at the time because no one wakes up feeling sick and thinks, ‘Great, I’ve come down with a chronic illness.’ I had no idea how long my symptoms would last, but I knew in my gut something was seriously off that day.
That first week was surreal. I was dizzy, feeling like I was rocking on a boat. Nothing in my vision was moving or anything; I just felt like I was constantly on unstable ground, even if I was lying in bed. Everything beneath my feet may as well have been water or a moving sidewalk, you know, like those ones they have in major airports. I also felt exhausted no matter how much sleep I got. It was as if I hadn’t slept in three days.
When I woke up feeling awful that day, I knew something was seriously wrong, but I also had in my mind that I could just go to the doctor and get it fixed and move on with my life. A week or two passed since that first morning of symptoms, and I remember walking into the local clinic, explaining my symptoms seemed to be progressing as time went on.
Dizziness, extreme lethargy, cold extremities, not able to focus well, having to study longer for tests because of my brain fog, often taking ten minutes to read a single page in my textbooks because of all of this. The doc jotted down a few notes on her computer.
In the end, her conclusion was I must have a simple condition called BPPV, where the crystals in your ear get dislodged causing dizziness. She sent me away with some exercises she said were sure to cure it, ignoring all my other symptoms in the process. I felt so defeated. I felt as though she dismissed me completely, but I did exactly as she instructed. I was faithful to those exercises, wanting so badly to feel better, to get my quality of life back.
Weeks passed. Nothing. No changes. I was so confused. I felt scared and somewhat unsafe not knowing what to expect from my body anymore. Not long into my journey, my symptoms escalated.
Occasional days of excruciating gut pain, moments where my arm or face felt partially numb, swelling and pain in my arms after holding a book for too long (too long meaning 10-20 minutes), swelling in my knees, joint pain, neck pain, all over muscle tightness and pain. Then, lights and sound started to bother me, making me feel like I was going to black out.
Our school was a small Bible college, and every day we got together in the chapel to sing, pray, and listen to a devotional. I began to dread that hour. I couldn’t stand the fluorescent lighting alongside the noise of the songs. Situations of too much stimulation suddenly not only made me feel like I was going a little crazy, but they also messed with my vision. I would see this dark overlay on everything. It was becoming way too much to handle. For anyone.
Pushing Through Pain
I was the kind of person who pushed through pain because I felt like I didn’t have a choice, so I kept going. Studying, working in the school office, babysitting, small photography projects here and there, maintaining friendships, trying to help as much as I could as one of the Resident Assistants in the dorm, juggling two minors, choir, ministry on Wednesday nights, and church on Sundays both in the morning and evening.
At this point I had started seeing a chiropractor, which helped slightly with some pain, but it barely made a dent. I went to multiple specialists in the medical world, and after countless blood draws, appointments, images taken, ER visits, etc. they weren’t coming up with much.
The general conclusion was I must have gotten a traumatic brain injury from an incident back in May of that same year. That didn’t add up to me. Traumatic brain injuries are noticeable from the beginning, right? Why had I felt totally fine for four months and then finally got symptoms from it? It didn’t make sense.
I was so upset about it all. None of my doctors gave me much direction other than advising a decent diet and dishing some antidepressants my way to help me cope, telling me time would heal the wound. When I went on to see a gut specialist, he barely glanced at my meticulously put together list of over twenty symptoms and denied any testing at all; saying I was young, my vitals were perfect, and it’s Irritable Bowel Syndrome without a doubt. He sent me on my way telling me to eat more fiber, problem solved.
To say I was devastated would be a huge understatement. Surely there was at least one doctor who would believe me and do more testing, but I had been to over a dozen at this point, and so far none of them had helped. Really, they just made me feel like I was crazy, dipping me deeper into depression.
I had been trying so hard to advocate for myself, but nobody was listening. Doctors wrote me off again and again, and I couldn’t take it anymore. ‘God, I followed You. I chose Bible college. Over all the other things I could’ve done, I chose to follow You. Why are you letting this happen to me?’ I thought.
My college years passed, and by some miracle, I graduated with a decent GPA. Oh, how I wish I knew how dangerous it was to push myself through the pain. It only made things worse.
I ended up back in my hometown after graduation, beginning a job at a bakery. Graveyard shift. I was in tears every single day at that job. Between the pain, the exhaustion, the pressure of the job, and the bad sleep schedule, I was a total mess. I continued to see my doctor off and on, but still, nothing.
After a few months, I had no choice but to quit and find new work. Next, I started working at the local library. Honestly, I loved my time there! But that job, as much as I loved the work itself, was also too much. By the end of my short shift of only four hours, my legs were at a level 8 pain. It was more common than not for me to be awake until 3 or 4 a.m. crying and exhausting myself to sleep because of the pain. I felt lost, and so alone.
Testing For Lyme Disease
I didn’t share much with others outside of my medical providers, because any time I mentioned it, they began playing doctor, telling me how to fix it all. The truth is I had already researched all kinds of things, and tried pretty much anything my family, friends, or coworkers mentioned.
I do remember one conversation that was actually helpful, however. I met with a family friend who was very convinced I had Lyme Disease like she did. I am forever grateful for that conversation, even if it did take me a while to believe she might be right.
One day at work, I ran across a book by Dr. Richard Horowitz. In it there was a self-assessment quiz for Lyme Disease. Perfect! I checked it out and got to reading right away when I got home. My quiz results were unbelievable. I took it to my doctor, and they agreed to run a Lyme test. I knew this had to be it!
Never mind, it came back negative. I knew the book recommended particular testing, but my doctor at the time was so set on doing it her own way. She was so confident that it wasn’t Lyme disease that I just believed her.
I know I should’ve felt relieved, but I really wanted to finally have an answer so I could start treatment for whatever was going on in my body, so again, I felt defeated. ‘When will this end? I had so many plans for my life. I’m only in my 20s! How is this possible? Why do I feel like I should be 90? Why do I feel like I’m slowly dying?’
Marriage & Pregnancy
In 2018, I got married to my incredible husband, Ben! He knew how sick I was, but bravely took on marriage even knowing about all the possibilities of challenges up ahead. He’s truly my hero, because there’s no way I could have handled this alone forever. We enjoyed the early stage of marriage as much as we could, centering all our activities together around whether I could handle them or not. (I’m in tears now writing this and remembering it all).
I got pregnant and had our daughter at the beginning of 2020. Quite the time to be going through all this. Little did we know the pandemic would end up being the least of our worries. The pregnancy had been pretty good, just dealing with the same symptoms I always do. The labor and delivery was extremely long and painful, but that’s a story for another time.
I enjoyed a couple months of bliss, being able to go on short walks with my baby girl every day, which felt like a dream. I felt like maybe pregnancy had sparked healing in my body. I was wrong. One day when I was sitting editing pictures of a recent family shoot I had photographed, I suddenly felt like I couldn’t breathe. I got really hot, then really cold, and then felt shaky. I called Ben.
Ultimately, I ended up in the emergency room that day. My vitals were perfect, but for some reason, they decided based on my symptoms that I had a heart attack and was also in septic shock. They slammed an IV into my arm, pushing antibiotics into my bloodstream. I was terrified.
‘I must be dying then, and I can’t even say goodbye to my husband and baby because of Covid rules,’ I thought. ‘I’m confused, because while I don’t feel right, I feel like I’d be feeling way worse if I were in septic shock.’ Turns out I had low potassium and that’s it. They were totally off in their diagnosis.
Reaching Its Worst
The next three weeks, I was bed bound. My parents came to help. I had no idea why I was so much worse out of nowhere. Looking back, I can see now that the antibiotics from that ER trip are what made me worse for those 3 weeks. It was a die off reaction from all the infections doctors had missed in me.
A couple months passed, and I made it through even though I was struggling badly on the inside with symptoms and sensations of all kinds. Ben got a big promotion and his company moved us to Oregon. I did okay for a month or two in our new location, but then out of nowhere I went downhill even further. Worse than I had ever been. I could not be up longer than 5 minutes without shaking internally from head to toe. I couldn’t even trust myself to carry my daughter most days.
We had family come out for a week. Then another family member, and another, and another. Ben’s boss’ wife even came over and helped for a few days. I was at the point where I couldn’t shower without Ben’s help, and sometimes even had to have help walking to the bathroom.
I was dizzy, exhausted, had countless food sensitivities, gut pain, shaking all over, muscle pain everywhere, and much more. My symptom list was at least 30 things at this point. There was mold in the apartment, which I would find out later exacerbates chronic illness like crazy. I did everything to try and clean it, but nothing worked. I had no idea at that time how badly it was contributing to my health, but figured it had to be contributing at least some.
With all my struggles, we realized we couldn’t stay there. We couldn’t keep having family come out to help; it was our turn to move close to family. So we headed back to my hometown to move in with my parents since I couldn’t even live alone at this point. We were out of options.
I was heartbroken because we’d had so many dreams. We had just gotten out of debt, and we sold our second car just to have an emergency fund. We had been around family, having no alone time for months, and now here we were, moving in with family.
Goodbye to being just us, our own little family. Goodbye to the apartment I so carefully chose décor for. Goodbye to Ben’s career and the financial freedom we had just gained. Goodbye to being 30 minutes away from the ocean. Goodbye to our everyday beautiful views. Goodbye to our dreams. Goodbye to the pursuit of happiness. Hello to the full time pursuit of healing.
Retesting For Lyme Disease
It took several months, but we finally found a functional medicine doctor who ran in-depth Lyme and coinfection tests alongside mold tests. Results came back with extremely high mold levels, and positive tests for Lyme and multiple coinfections. I lost it. Cried off and on in shock for a few days.
I had nearly 10 infections and 4 types of mold toxins. I couldn’t believe all this had gone untreated for so long. If only someone had believed me in the beginning and looked deeper into my suffering. I was mourning what I had lost to Lyme after all these years, but I also felt excited to have answers. Finally I could start treatment.
Before treating, I had to throw out anything that had gotten ruined by the mold toxins in that apartment. I soon realized all of my clothes from there would have to be thrown out because they caused me nerve pain and tingling every time I wore them, even after we did everything we could to clean them. Lyme just made me extremely sensitive.
So I bagged every single clothing item, every book, sheet, towel, blanket, anything we would not be able to salvage. Our furniture pieces and other belongings are in storage right now, and once we have our own home again we will likely not be able to take those with us either. No point in taking on more symptoms when we start our new life one day.
Nearly everything, gone… Another loss to mourn. Some items were harder to get rid of than others, because of the sentimental value. The light blue top my hubby bought me, the nightstand he made as a wedding gift, my favorite books… I could go on. Once we removed the mold sources, treatment could begin.
Treatment for me so far has looked like NUCCA chiropractic, ozone injections from a biological dentist for my chronically infected tonsils, herbals, nutritional supplements, teas, a medication called Low Dose Naltrexone, homeopathy, EFT Tapping, Frequency Specific Microcurrent, dry brushing, dead sea salt baths, switching all my personal products, cookware, and food to be completely clean and non-toxic, lymph massage, nasal rinses, red light therapy, physical therapy, counseling sessions to help with past traumas, safe and sound protocol to help with vagal tone and retraining the brain, at home vagus nerve exercises, consistent eating, and sleep schedule.
The treatment that’s helped most so far, the thing that got me out of bed after only one day of treatment, a treatment called LymeStop. LymeStop is so simple it feels like it shouldn’t work. The doctor uses muscle testing to find where the different Lyme infections are hiding in your body, and then uses the magnets to tell your immune system where these infections are so that your immune system kills the infection on its own.
Typically, when Ben and my daughter go inside a store, coffee shop, or really any errand at all, I wait in the car. I wait in the car because a few minutes after being up I feel lightheaded, my pain levels are too high to stand it, and I am dizzy.
After my first day of magnet treatments, I started to notice changes. We pulled up to a juice bar, and this time I didn’t wait in the car. I went inside. I walked up to the counter and ordered, and then promptly sat down anticipating the lightheadedness, but it didn’t come. I cried tears of happiness when I got up and danced with my daughter in my arms a few minutes later. It’s hard to explain how life changing that moment was!
For the first time since that morning in my dorm room, I felt like there was hope. I’m not fully better yet, but I believe between my current LymeStop treatments, the Safe and Sound protocol that uses specifically calibrated music to retrain your brain to feel safe again, sauna, and my functional medicine doctor continuing to guide me in treating the high levels of mycotoxins (mold toxins), I will be in remission within a year’s time.
Raising Awareness For Lyme
Lyme is missed in so many patients. It’s the Great Imitator, often misdiagnosed as an autoimmune condition, Multiple Sclerosis, Fibromyalgia, Bipolar, Chronic Fatigue Syndrome, and more. I’ve seen posts from people who have had both Lyme and cancer in their lifetime, and they say that both your quality of life and the treatment process with Lyme are worse than dealing with cancer.
The leading cause of death in Lyme patients is suicide. If that doesn’t tell you how horrible it is, I don’t know what will convince you. So many of us lose everything because of this disease, and believe it or not, many doctors still do not believe that chronic Lyme even exists.
I will never quit sharing my story to help bring awareness to this disease. I never even saw a tick (they’re tiny and easy to miss). I never noticed a bullseye rash. And yet, here I am. Sadly, my story is not unique. I have met many who have eerily similar stories. If you’re healthy, I’m begging you not to take it for granted. Every breath we have truly is a miracle.
To my fellow Lyme sufferers: I’m not sure why God allowed this to happen to me, but I also don’t know why He’s allowed good things to happen in my life either, when I don’t deserve them. I struggle to see hope in all of the suffering, but I have to remind myself that our hope doesn’t rest in this world, it rests in Christ.
It is SO difficult to see these truths in the middle of extraordinary pain, and I want you to know that it’s okay to ask the hard questions. Sit with them, dig for answers, cry to God for help, and remember that Lyme steals your ability to think and feel clearly in the first place.
Remember your clarity of mind and emotions will get better with treatment. Friend, I know you’ve had days when hope is completely lost and you feel like you can’t go on, but please… Please don’t give up! I believe you will get through this. Don’t stop pursuing hope!”
This article was submitted to Love What Matters by Alanna Winkelman. You can follow her journey on Instagram and support her chronic illness awareness t-shirt shop here. Join the Love What Matters family and subscribe to out newsletter.
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