Nearly every day I hear from an individual who has been affected by Lyme.
I found a tick on me. What do I do?
I’ve been sick for months. I’ve been tested for everything, but my symptoms really match Lyme disease. Is there a test for Lyme?
I’ve had Lyme disease for six years. Your blog makes me feel less alone.
Could you give a mini-presentation to my coworkers and me about Lyme disease?
Sometimes the messages give me purpose, and for a few minutes I become consumed with responding, guiding someone out of the darkness of Lyme toward the light of treatment and recovery. It’s much like when I’m reading a book. The rest of the world ceases to exist. Dinner goes unmade and bedtimes are overlooked. My kids have joked that when Mom starts a new book they know everything else will stop. My reading habits illustrate my lack self-discipline. Rarely can I read just one more chapter; I’m greedy, devouring most novels within a day or two. I can’t help it. Books are my only addiction.
I’ve realized that my passion for Lyme awareness is much the same. When I receive a message, I’m consumed with a deep need to help, to support, and to advise. Even when I’m having a flare up myself, I work to quiet the brain fog and joint pain enough to respond. Time is often of the essence, particularly for those recently bitten and showing symptoms. After all, if Lyme is caught early enough, a round or two of the antibiotic Doxycycline can be effective at preventing long-term health problems.
Sometimes the messages weigh on me. Most of the situations are not a quick fix. Late-stage Lyme disease is forever. Even with a diagnosis, there is no cookie-cutter, one-stop treatment. You can’t take a few pills and get over it. My heart hurts for those in any stage of Lyme, and I find myself thinking of their pain. Pain I know too well. Pain I can’t cure. Pain that hurts not only physically, but also emotionally. Pain that strains even the strongest relationships. Invisible illnesses are cruel like that. They infect bodies, relationships and minds.
In those early months, I can’t tell you the number of times I wondered if I was crazy. The official diagnosis, something I could see on paper, was such a relief to me. Once there was a legitimate reason for my symptoms, there was a tremendous sense of comfort and validation. But many individuals who have Lyme disease do not test positive. Our testing for this disease is not adequate, especially considering the CDC estimates that over 300,000 people in the US contract Lyme disease per year. The ELISA, the earliest test for Lyme, is only about 65% accurate. It’s the most widely run test and is generally covered by insurance, yet it is the least definitive. The Western Blot, which is a blood test that measures “bands,” each representing certain antigens, parts of the bacteria that the immune system reacts to, has only 80% sensitivity.
I was one of the lucky ones. Although my ELISA came back with a false-negative, I had three bands, two of which are required by the CDC criteria, test positive on the Western Blot. My family doctor was thorough, and while my symptoms were not those of early Lyme disease, he ran the Lyme tests just in case. I was evaluated in the right window, just enough antigens built up in my system but not too many antibiotics to throw the test off.
Many are not that lucky. Like me, many miss the early warning signs of Lyme: flu-like muscle aches, headache, fatigue, and low-grade fever. Less than 70% get the “tell-tale” bull’s eye rash; I didn’t. I had thick, dark hair, so if a tiny black-legged deer tick decided to feast on my scalp, I missed the dinner invitation.
Many are treated for other illnesses for months or years before they’re even tested for Lyme, which often creates false-negative test results. If they actually do receive a positive diagnosis, many have to fight with their insurance companies for treatment. Few insurances recognize chronic or post-treatment Lyme disease; therefore, patients are forced to pay for treatment out of their own pockets while their income is drastically reduced because of missed work days. Currently, Lyme disease is quite possibly the most controversial illness in the U.S., dividing the medical community on nearly every aspect, from the diagnosis requirements to the standards of care, and leaving patients in confusion as to whom or what to believe.
Lyme disease is a mess. A big mess.
Have you ever walked into a room that, as my mother used to say, looks like a tornado hit it? My oldest daughter is quite the tornado. Give her thirty minutes and she can completely destroy a room. It’s a baffling skill. Clothes I’d forgotten existed will litter the floor. Toys, teeny tiny ones especially, in piles. The baskets, my attempt to keep items sorted and organized, emptied and mixed together. Even the closet will be in upheaval. Stuffed animals, Barbies, Legos, you name it. Everywhere. Standing in her doorway, my brain attempting to comprehend what I’m seeing, I will at once be frustrated and impressed. If I were trying to create this disarray, I couldn’t do it this effectively, especially in under an hour.
This is the kind of mess that is Lyme disease. The kind of mess that is just flabbergasting. Once you see it, you can’t un-see it. You know the mess has to be cleaned up, but you don’t even know where to start. You want to scream, but it won’t do a darn bit of good. Yelling won’t get rid of the mess, and eliminating the root of it isn’t an option.
We cannot eliminate ticks, the carriers of this mess, but we still have to deal with it. Lyme disease isn’t going to quietly disappear. and it can affect all of us. The cleaning fairies aren’t going to sprinkle a little dust and make the tornado wreckage go away. We can’t close our eyes and pretend it doesn’t exist. Sure, we can avoid it, but sooner or later, we have to get down on our hands and knees and start picking up the debris, one piece at a time.
My piece is awareness. It’s educating students and their teachers, stepping out of my comfort zone and showing embarrassing selfies taken at the darkest points on this journey. It’s advocating for fellow Lymes, listening as they admit their deepest fears and offering encouragement and support when I can. It’s writing this blog, sharing stories of hope and laughter, inspiring those with Lyme or other invisible illnesses or, heck, just invisible needs to keep coloring their lives. It’s as simple as wearing a t-shirt with the words “Lyme Disease Ticks Me Off” and sharing it on Facebook to remind others to keep fighting, to be vigilant, and to find the good.
Because there is always, always, always something good. It’s easy to get bogged down by the bad in our lives. The messes overwhelm us, and we often forget how small our one mess is compared to how big our blessings are. When my little Tornado Gracie creates total mayhem in her bedroom, it’s easy to be overpowered by the destruction.
But it is just one room. It’s just one mess. It does not define me, my home, or my life. Sure, it’s a hassle, a wasteful depletion of my energy and time. I’m entitled to frustration and disappointment, but I can’t wallow there. After the initial feelings of exasperation and a few mental bad words, I have to pick up the mess and move on.
This is Lyme. This is invisible illness. This is unemployment or the loss of a loved one or a child who isn’t living up to his full potential. It’s divorce. It’s cancer. It’s financial strains and family disagreements. It’s heartache and loneliness. These are our messes.
During one of my awareness presentations, a little boy asked me “What is the best thing that came from your Lyme disease?”
My mind raced for the answer then, and I still contemplate that question now. In the midst of all the ugliness of this disease, there has been unmistakeable beauty. The kindness of others. My closer relationship with God. The friendships forged as a result of Lyme camaraderie. Strength I never knew I had until it was required. Appreciation for little things, like taking a shower without having to worry about getting my PICC line wet.
The last seven months of my life have been a big mess, and I am still trying to tidy up. I wish for cleaning fairies. I wish the Lyme disease mess would disappear. But as the optimist in me wishes, the realist works to clean it up, one presentation, one email, one blog post at a time. Life is messy; however, gratitude harnesses the disorder. I try to see the good, to remember that my blessings are so much bigger than my messes, to be thankful that I’m finally climbing out of the wreckage.
Do you have a mess in your life? Does it feel like it’s just too much and you don’t know where to start? Or maybe you’ve started, but are feeling exhausted from the struggle? We all have them, and the size of my mess does not make yours any more or less daunting or valid.
After all, we’re in this mess together.
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