White Hearth Coffee Blog

I have Lyme disease, it doesn't have me

I mention Lyme disease quite frequently in my posts. So I figured I might as well do a blog post sharing with everyone one of the most trying times of my life. I shared this piece at an autoimmune wellness event done by The Wild Way coffee and was touched at the amount who have similar stories and experiences with chronic illness. So read on if you’d like, or don’t, because this post isn’t about coffee. 

Photo by Lindsey Dyer

I developed Lyme disease when I was 19, though it didn’t take hold of my life the way most chronic illnesses do until I was 20. I was months away from marrying the love of my life, Andrew, the man who has walked me through every step of this journey. It started as extreme fatigue and a series of misdiagnoses. I went from running half marathons and filling every spot on my schedule to becoming so weak that walking a quarter of a mile was my limit. Over time my fatigue turned into lymph node swelling, severe weakness, mental fog, pain all over my body, difficulty concentrating, facial paralysis, difficulty walking and the eventual collapse of my life as I knew it. I would have loved to have seen my chart at that point in time as I’m sure anyone would have been dumbfounded as to how a 21 year old girl could have depression, Fibromyalgia, chronic fatigue syndrome, severe stress, Mono, a really bad sinus infection, chronic migraines, a chiari malformation and TMJ dysfunction (that’s right, the hospitalist diagnosed my bells palsy and inability to speak as TMJ, most dentists tend to disagree with that being a symptom but what would I know?).

Not sure who took this photo, it was a long time ago. 

I remember doctors specifically saying to steer clear of the Lyme diagnosis, for some odd reason they thought the diagnosis of stress was much more appropriate. Not sure how they planned to treat that since I had been stressed in the past and never once been so incapable of functioning, but that’s neither here nor there.  Over this period of time I learned something about the medical field, it was abundantly flawed, and I was doomed. That’s probably about the same time I decided to become a nurse, maybe hoping to make some sort of a difference. Months of pain, weakness and an overwhelming sense of loss and betrayal of the body which once allowed me to do so much turned into dropping out of my undergrad at KSU, quitting my job as a waitress at Houlihan’s, stepping down as captain of my frisbee team, quitting the team altogether and ultimately turning into a shadow of the person I once was. My identity was lost with the collapse of everything that made me, ME. A few weeks before my wedding, a family member received a call that they had seen me through a prayer list and suspected I might have Lyme disease. They sent me to a primary care doctor who diagnosed me with Lyme disease and said that we would begin treatment as soon as my husband and I returned from our honeymoon. 

Photo by David Fiser 

We started treatment right when I returned, what a way to start a marriage huh? It was terrible, part of Lyme treatment is that you know that the treatment is working when you have something known as  a herxheimer reaction, this is when the bacteria dies off and releases toxins into your body that make your symptoms worse. Most lymies will tell you that the treatment is worse than the disease, and they are right. It sucks. I felt sick pretty much every day for a few months and my angelic husband came home to me lying on the couch most days because I had become too weak to make it to the bedroom. Thank God for the people in our lives who carry us. He carried me, many times. This was just the start of the wonderful sparkles that were found throughout the course of my experiences with Lyme. Over time, the herxes got better, I eventually learned how to live with the pain and my fog lessened, or so I thought, I wasn’t really sure because my reality became the pain. Some days were better than others, and for that reason most people looked at me like I was either A. Crazy or B. a complete and utter liar. 

“How could you walk so well yesterday and today you say you’re in excruciating pain?”

“I don’t get it, you don’t look sick.” 

Photo by Andrew Dalbey of climbing a mountain in Colorado that sent me on a downward spiral.... oops

Over time, I learned to conceal what I felt and that the pain of rejection or doubt I received from the people around me superseded my need for comfort. Eventually, I even started to have good days, the days that were super great where I could walk and even run! I utilized these days as sunshine in the darkness, they were my slivers of gold. But as most of us know, every good day has a price and that tends to be the week spent paying for those laughs or active moments on the Frisbee field. After  a year of treatment I got so much better that I even climbed a mountain, that one was definitely a mistake. It sent me on a spiral which ended in me being referred to another doctor who had a much more aggressive take on treatment. My meds quadrupled over night, after 10,000 worth of lab work just to START seeing this provider, we spent another K or 2 every month just to maintain this treatment because insurance doesn’t believe in Chronic Lyme. Every single day of my treatment was a question of whether or not it was all worth it, had we invested our savings into my health in vain? Were the thousands of dollars going to amount to anything more than another herxheimer reaction? I wasn’t sure that they ever would. But my husband was, my friends were, and my tribe stood beside me during the most difficult times of my life. They sat next to me on the sideline when I had to step out during a game because I couldn’t do what my mind wanted my body to do. They sent me cards in the mail when I thought everyone had all but forgotten that while they were living life in the amazing invincible state we all love to find ourselves, I was still, sick. It was EXHAUSTING. 

Photo by Amanda Johnson with her selfie stick

I think I reached a point where I stopped talking about it. Why beat a dead horse? I hid my pill case with well over 50 pills and ran off to the bathroom to take the random elixirs I had to consume. Close friends were well aware, but even they didn’t actually know how much pain I was truly in, because I didn’t let them. I learned something from this process, I learned that we need a tribe, that we need to open up and that sometimes people will let us down with how they respond, especially when it comes to chronic illness. But that doesn’t mean we need to shut down completely. 

It took a few years with my new treatment regimen before I heard the blessed words that I was in remission. I would wait 6 months to see if my symptoms returned and if they didn’t, I would TRULY be in Lyme remission. What a fun game. I was welcome to pay another 1000 to actual take a test to see, but I consider myself more of a risk taker and thought that would be the best bet in this situation, and frankly I WAS DONE with taking pills that wreaked havoc on me. 

I’d like to end the story there and say that it was the most amazing thing that happened to me and I haven’t been impacted whatsoever by my experiences. But that would be a lie. My immune system doesn't function as I would prefer it function, but I've learned how to take better care of myself. I go to counseling now, I have some major PTSD And still struggle to drive by my doctors office. I decided to go ahead and get a job in the infusion center that I was a patient so that can be a trigger at times. But I’m learning that sometimes touching the pain, even if only briefly can bring healing in such profound ways. After I went into remission I dove headfirst into ways to take control of my health which might make me feel more like I had control over whether or not Lyme came back. I did a lot of research on diet and lifestyle modification and for that reason I try to eat mostly paleo. Although I’m not as strict as some, I find that I feel much better than I did before these changes and they make me feel like I can prevent this terrible illness from returning. I also rely heavily on counseling, prayer and my tribe. I’m no longer a closed book like I once was, I like to be transparent with how I’m feeling and to let people in. People want to help, they truly do and they want to see you if you’ll let them. Counseling has been life changing to undo some of the habits I formed from being sick for so long. I recommend it to anyone who meets the criteria of being a human. 

Autoimmune wellness event at The Wild Way and I'm completely unsure who took this photo

For those of you who are reading and are still suffering, I’m sorry. There aren’t even words that can convey how sorry I am that you have to experience this pain. But I’d also like to say something else, don’t lose hope. Whether it’s hope that you’ll be able to take a ten minute walk this afternoon or simply enjoy a dinner with your family without getting up mid meal to lay down, you can do this. When you feel like you can’t, find your hope in your friends, your family or your faith. Honestly, I don’t know what to say other than that. I encourage each and every one of you to find your sparkles where you can, find the moments that make you grateful to be alive and cling to them so tightly that your disease doesn’t stand a chance. Your disease doesn’t define you. You are YOU with or without the ailments that so desperately attempt to take yourself from you. I used to say that I had Lyme disease and it didn’t have me, the same still rings true for all of you, you have your disease, but it doesn’t have you. Show it who's boss, you get the final word, not your lousy symptoms. So don’t lose hope, don’t lose faith and please don’t lose yourself.  

Photo by Andrew Dalbey of the first mountain I climbed a year and a few months after achieving remission, I didn't relapse after this climb and I definitely cried a bit when we made it to the top. 

People sometimes ask me what this means for me now, I have Lyme disease, though it's in remission my life will never be the same. But like I always say, it doesn't have me. I run again, drink all the coffee the world has to offer and you better believe I climb that mountain. Sure, the Lyme could come back, but right now I'm just going to appreciate each and every second I have that I don't have it looming over my head, because even if it does, I'll take that darn lyme and make some lymeade, lol who am I kidding, I'll just make coffee. 

Peace, love and White Hearth Coffee,