My Lyme Story
People struggle to wrap their brains around my Lyme experience and I struggle with how to explain it without sounding pitiful.
I suspect I had Lyme’s for a while before being diagnosed or even falling down ill from it. In the fall of 2006, a doctor thought I might have MS because I was having memory issues, dizziness and migraines. He also ran tests for Lyme along with Lupus and a whole host of other diseases; I tested negative for all of them. In the spring of 2007, I had a boiler room job where I was working 50+ hours a week. I would come home from work and pass out on the bed in my suit only to wake the next morning, change into a clean suit and repeat the process. My husband worried about me but I thought all my co-workers were doing the same thing (it turns out they were speaking in hyperbole, where I was speaking literally.) Even going back as far as 2004, I would have to pull over on the side of the road because I was nodding off behind the wheel even though it was the middle of the day.
I officially fell down ill on June 2, 2007 with flu like symptoms, including high fever and vomiting. From that point, it took them over two months to come up with the Lyme diagnosis. I ran a fever for 28 days straight.
The story leading up to the diagnosis is long and humorous with the distance of time and includes more blunders than anyone should have to endure. (picture 7.5 hours in the ER, after being removed from D.C.’s Union train station on a stretcher because they convinced me I was having a heart attack, and the only diagnosis the E.R. could come up with was a bladder infection!!) Yes, this gives a good indication of the idiocy I had to deal with.
I spent a year and a half bedridden; on days when I was able to make it beyond the bedroom, we celebrated. During that time I slept 20+ hours a day. I had significant cognitive deficits: I temporarily lost my short-term memory, I lost entire conversations and I wasn’t able to follow a half hour TV program if I hadn’t seen it before. My ability to read, write, or access my long-term memory was hindered. My life is demarcated “pre-Lyme” and “post-Lyme.” Pre-Lyme I was very capable academically, so of all the things Lyme has taken from me, that is one of the hardest. I employed a neuropsychologist to help me figure out how to retrain my brain. The process of regaining access to my memories has been fascinating, though long and inconsistent. In the fall of 2010, I began doing neural feedback with tremendous success.
I believe I have been through a total of 8 different courses of antibiotics (but I have lost count at this point.) My last course of antibiotics (a combo of Biaxin and Plaquenil) lasted for over a year and finished the summer of 2009. Daily I take several medications to assist in pain management in addition to other supplements to help manage the side effects of Post-Lyme Syndrome and/or the meds. I battle nausea and other side effects from all these pills.
I believe in combining the best of both Eastern and Western medicine, so I swear by weekly medical massage and acupuncture. I have found that movement is key to reducing pain but I have also noticed that staying strong helps reduce the frequency and length of my setbacks. In order to accommodate my unique needs I do private therapeutic yoga multiple times a week and Red Cord
once a week.
I am an equestrian and I find that just sitting on my horse raises my spirits so much and in-turn helps me physically.
Some days I am a strong and capable rider; other days I grab mane and my trainer leads me around the farm on a pony ride. I think this confuses people- that what I am capable of changes from day to day or week to week. There are so many factors that go into the mix to determine how I feel: the weather tops the list, but also stress, sleep, diet, change in meds, and if I have been pushing myself too much are the primary ones. But true confession: if there is something I have my heart set on doing, I manage to dig down deep and find the strength, however that usually causes me a setback.
Pre-Lyme, I went a million miles an hour constantly. Christine Miserandino came up with the spoon theory
, which explains that those living with chronic pain have a limited number of spoons available to use, while the rest of the world has a limitless supply. I have had to learn to plan and ration these “spoons” in my post-Lyme life. I wear down so quickly now. (I find myself chuckling at the irony that my childhood baby-sitters would have loved for me to wear down; lord knows I was constant, boundless exuberance, which was exhausting to those in charge of my care.) Now, I have had to learn to pace myself and be patient with myself, skills I am not known for. [read more about “Spoons” here
There seems to be something about how Lyme affects the hypothalamus because it is common among “Lymies” to be constantly cold. I’m not talking about the “oh wow, I should’ve grabbed a coat” cold; I’m talking about wearing a winter coat, hat and gloves during the summer type of cold. I sleep with an electric blanket most nights, even hot Atlanta summer nights. Days that I feel worn down and in pain, I get particularly cold; they seem to go hand in hand. Of all the things that people don’t understand, this one is the hardest for me, I suspect because it is the hardest to explain. Although, since doing neural feedback, this symptom has been greatly reduced.
It is my understanding that Lyme’s will be with us forever, similar to Shingles. It can flare up in times of stress (just what we need when we’re stressed.) But Lymies can do things to help our bodies stay strong and prevent flare ups: eat well, sleep, exercise, be mindful of weather events (cold & wet are hard on me), try to reduce stress events or prepare for them.
With all the terribleness of this disease, I used it as an impetus for positive change. I am currently at Emory University’s Candler School of Theology pursuing my Masters in Theological Studies. I am here because of my Lyme. I was bedridden for a year and a half, suffering mentally, physically and cognitively; I was so close to just giving up. Lyme is rarely fatal, but when you loose so much of your life, the finite nature of our time on this planet comes into stark contrast. So I decided that I was going to fulfill my lifelong dream of studying religion at the graduate level. When I made this decision five years ago, I had no idea how I was going to make it happen but I was determined. (My LLMD and I believe that one of my greatest tools in dealing with Lyme is my stubbornness, I am fully using it to my advantage.)
If Lyme had not forced me to step back from my life, I would not have had the opportunity to follow my dreams.
Lost and Found Love
Additionally, the man that I was married to when I fell ill essentially abandoned me. That is a complicated story, which is not directly relevant here so I will not expound on it at this time. I know that my story is not unique- so many people are abandoned by their partners when they fall ill with an auto-immune disease. I could have stayed with him, he was a decent man, but somehow I knew that even though walking away and tackling this disease on my own terrified me, I deserved better. I used the line from Some Kind of Wonderful as a mantra, “It is better to be alone for the right reasons than with someone for the wrong ones.” I was terrified, but I survived.
For years I was single and was fine with it. I had no expectations of ever marrying again- I was twice divorced with five cats and Lyme disease, who the hell would want to sign up for that? Then one day, one of the doctors at the eye clinic confessed to me that he was dating a woman with Lyme disease. This information opened up a whole new perspective for me: here was a great man, employed, handsome, kind… and willing to stick by someone suffering in this manner. I slowly began to date again, still with no expectations of anything permanent.
And then Jeff came along. He is an amazing man! He is my perfect match. And he loves and supports me, on good days, on bad ones, and even on terrible ones! I tell you this because love is possible, even post-Lyme.
On my About page, I state that I see getting Lyme as a blessing. I have no idea what my life would look like if I had not gotten Lyme. My life is far from easy, but it is miraculous! But mainly, I refuse to give in to this tragedy.