Throughout the course of my illness, which seems like forever by now, I have become really good at accepting my body’s limitations. I don’t credit this to myself, but rather to the incredible people that God has placed in my life in one way or another. One of my boyfriend’s favorite things to say is, ‘it is what it is’. And it’s true, you can fight it all you want, but at the end of the day you won’t be able to move forward until you accept it, whatever your ‘it’ may be, so that you can effectively move on. Another person who helped me to accept my body’s new limitations was a ‘therapist’ I saw when I was still in NYC. The type of healing techniques that he practiced were absolutely unconventional- he was a chiropractor, a nutritionist, and also specialized in energy work and the mind-body connection.
When I started to get my really scary symptoms (facial numbness, severe jaw and neck pain, tingling in my extremities, etc), I went to countless doctors who all told me that I was fine, that my symptoms were all in my head. Part of me knew that this wasn’t true, but the other part of me wondered if maybe I could ‘fix’ myself with some mind training. That’s where this ‘therapist’ came in. He taught me not to be so afraid of my body, but to be thankful that it was trying to tell me something (rest, eat some protein, drink some water, etc). Over time, I learned not to get so scared of the wacky things that were going on inside of my body. I learned to ride out the symptoms, and most of all, I learned to accept my body’s limitations, something had never learned to do in all my 26 years.
I try to practice acceptance so that I’m not living in a constant state of friction between what I want and what I cannot do because I am sick (side note: this does not mean that I stop dreaming, goal digging, or fighting for my health). I am not immune to my feelings though, and throughout my illness I have experienced all of the emotions that you would think were a normal reaction to having the life literally sucked out of your body. I’ve been overwhelmed, frustrated, sad, anxious, terrified, and angry. Out of all of these emotions though, the emotion that I have experienced least is anger. I don’t know why this is, maybe it’s because I have gotten so good at acceptance, or maybe it’s because I simply don’t have the energy to be angry. It’s much easier to shed a few tears (or let’s be honest, sob uncontrollably) out of my own personal sadnesses than it is to get worked up about the larger injustice that this disease has brought into the lives of it’s many victims. Whatever the reason, I can say rather confidently that I don’t get super angry about being sick very often. It’s not productive.
When I started reading Kerissa’s story though, I got angry, really angry. I got through question five before I had to set my phone down and stop reading. It was too much. It was too much to read yet another story about a lively, intelligent, fun-loving person being taken down by this stupid disease, and I got mad. Really mad.
I’m mad that most of the world either doesn’t know about or doesn’t believe in Chronic Lyme Disease. I’m mad that living a healthy lifestyle didn’t spare me from the cruelty of this disease. I’m mad that this disease picked me. I’m mad that I suffered for over ten years before receiving an accurate diagnosis. I’m mad that there are many others who are going through the very thing that I am struggling everyday to cope with. I won’t go on. Like I said, it’s not productive.
What is productive is raising awareness. Two years ago I had no idea that something as seemingly trivial as the bite of a tiny-poppyseed-sized-tick could wreak such havoc on one’s health. I don’t want anyone else to risk their health simply out of ignorance, and that is why I started this blog, that is precisely the reason for this series. If any of our stories can prevent someone else from becoming so desperately ill, then I’d say it was all worth it.
I hope that Kerissa’s story enlightens, inspires, and encourages you, whether you’re a fellow Lyme fighter or just a passer by. Thank you Kerissa for sharing these words, you are a brave and beautiful soul.
First Name: Kerissa
Where do you live? Fort Worth, Texas
When/Where do you suspect that you contracted Lyme?
I really wish I knew. My guesses are: In 2011, I took a 30 state road trip since I had turned 30. Sometimes we would get to campsites in the middle of the night and set up our tents. I didn’t wear bug spray at the time, because I never got bit by mosquitos. I didn’t know about ticks. Or I loosely did, but not seriously. I could have also gotten it in 2009 when I lived in Austin on the greenbelt. My yard was overgrown with forest, and I used to lay in my hammock or work in the yard barefoot. Honestly, who knows?!
When did you first begin to feel ill or start to notice strange symptoms?
After 2009, I started having more and more headaches. It’s all hindsight now, but at the time I didn’t think anything of it. I started taking more naps. I started having more troubles running with weird injuries. I thought, “I’m just getting old!” In May of 2011, I got a 4 day intractable migraine. I went to the ER and they made it go away with what I think was DHE. I thought that was obviously strange. I went skiing with my dad and could barely keep my eyes open after a few runs.
What were they?
Leading up to the main event, I was sleeping all the time. I had a colonoscopy in late July and then three days later, the *life changing thing* happened. In August 2012, I woke up with a headache that hasn’t gone away since. I kept explaining to people and doctors it was unlike anything I’d ever experienced. My heart rate, which was usually in the 60s, was resting higher and higher over the months to a point where it was resting at 110 and doctors told me that was normal. I had adrenal fatigue. Brain fog. My menstrual cycle, which was always normal, just stopped. I got pneumonia. My legs hurt. I really couldn’t pinpoint all my symptoms because my head hurt *so* bad.
How many doctors did you see before reaching an accurate diagnosis?
I would say 20-30. So many neurologists. ENT doctors. General Practitioners. I kept getting 2nd and 3rd opinions. Whole teams of doctors.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
Migraine, Tension Headache, Trigeminal Neuralgia, Occipital Neuralgia, Intractable Migraine, “See a psychiatrist”, an acupuncturist told me the emotions of losing a friend had caused it, and finally, Near Daily Persistent Headache. Someone said the word “Lyme” to me in October. I know this by searching my email chats. But I didn’t really seek it out until January or so. I found out March 21, 2013 that I had Lyme. A week after staying in a headache hospital being pumped full of DHE and steroids to try to break the headache.
What are the main symptoms that you experience currently?
I’m much better than I was. But I still have a headache, though it’s not as debilitating as it was. I have neuropathy, as many others do. My legs and feet kill me everyday. I have very swollen legs. I’m exhausted. Low blood pressure. Menstrual cycle is still not my friend and I have a very painful time with that. My heart rate is still too fast. I can’t stop gaining weight. But mainly headache and fatigue.
What does your treatment regimen look like?
I am on an antibiotic protocol. It’s a mixture of Jemsek and Horowitz’s theories on treating Lyme. I was on 4 oral antibiotics for 9 months. They were just recently changed, so I’m on 4 new ones to target the 3 forms of the bacteria and Bartonella. I am also on supplements and a huge diet change. (I think most people do these things so maybe this isn’t news.) I had decided to go the antibiotic route to start. I also see a chiropractor and acupuncturist and take daily epsom baths and detox in any way I can.
How much do your symptoms prevent you from living a normal life?
Oh goodness. Well, I used to live in Austin in my own apartment with what I considered the best life. I had my dream job in education and was extremely happy. I lost it all in a blink. Two months after the headache started, my parents came down while I was in the hospital and got me out of my lease and moved me into their home in Fort Worth, where I currently live. I couldn’t attend all my fun music festivals. I was in the hospital during SXSW. I lost my job. I *felt* like I lost my friends. Some of them I did lose, but some of our relationships have obviously had to change. I was unemployed and in bed for a long time. Now – it’s just a different life that I don’t consider normal.
What do you like to do in your free time and how is this different than before you were sick?
In my free time, I play with my new puppy. I watch a ton of TV and read books (mostly not about Lyme. I like to take my mind off of it.) I take epsom baths (that has to be in my free time because they don’t allow that at work. ha!) I go to trivia and small events when I can. Movies when I feel okay. I’ve even made it to a few concerts and traveled to close places a few times. Before I was sick, I was a marathon runner. I was doing something every night with my friends. I explored and adventured. I will do those things again.
What do you want people to know about Lyme?
There are so many things to know about Lyme. I don’t even think I’ll ever understand or know all of it. But what people need to understand is that if it’s not caught immediately and treated, then everyone heals differently. No one person with what Horowitz calls MSIDS can be ‘fixed’ the way you think they can. People experience different symptoms. It mimics a lot of diseases. If you’re told you have an auto-immune disorder, don’t just accept it. Fight for your health and see if a tick has burrowed its way into your system to try to ruin your life.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
I think I’m very much more aware of people’s experiences. I am able to connect with the people I work with in a more meaningful way and able to witness the struggle of others much better. I practice empathy as much as I can now. I am thankful for family, because I don’t know what I would have done if they didn’t have a place for me, or couldn’t help take care of me. I felt sorry for myself for a long time, and sometimes still do, but I think I now understand what it means to truly fight. For the life you want. And the life you deserve.