I couldn’t let May slip away without acknowledging that May is Lyme Disease Awareness Month. In the past, this month didn’t mean too much to me. Though I’ve watched family work through Lyme Disease in the past and had a prior firsthand encounter with tickborne illness in grade school, it didn’t really impact me personally, so it didn’t hit very close to home. In 2019, however, I was diagnosed with late-stage (chronic) Lyme Disease while my husband was deployed, and the disease took on a whole new meaning for me. It became the elephant in the room and brought a whole host of issues to light that I hadn’t truly acknowledged before. So, before Lyme Disease Awareness Month slips away, I wanted to take the time to acknowledge tick-borne illnesses and the disease that changed the course of an entire year for me – and the lives of so many others.
For those of you who are new to my blog, I wanted to share a little backstory with you. I had our third child in late March of 2019. Ryan was able to come home from his deployment in South Korea for three weeks, and we were able to spend time bonding as a family before he returned to finish his deployment when Mieke was 19 days old. I navigated the healing and postpartum process solo, and things were going well. Until one day, I noticed that the healing process just wasn’t really going anymore. Initially, I wrote it off as a postpartum hormone imbalance. When it didn’t start to get better, I figured that marathon training was the cause, so I backed off. Things didn’t improve though.
My hair was falling out in clumps. I bruised easily. I was so exhausted – both mentally and physically, and it didn’t matter that my baby was sleeping through the night. I could sleep from 7 to 7, and I still felt like I was dying. I drank 3+ cups of coffee and Red Bull a day just to stay awake, but I was still running on fumes. My hands were tingly and numb. Sadly, that wasn’t the worst of it. One afternoon, I picked up the kids from daycare and fell asleep at the wheel with the kids in the car. It was quick. I bumped off the curb and woke up, but I was terrified. I called my doctor and made an appointment for blood tests.
Everything came back normal.
They recommended adding some vitamin B to my diet and eating more leafy greens. I accepted it, but I was frustrated, wondering why my body continued to wage war on itself when it should’ve been healing after the birth of my third child. The symptoms continued to get worse over the next few weeks and, more worryingly, they started affecting my mind. I’d forget words mid-sentence. I started to forget the kids’ names. I couldn’t think of simple things. I started leaving notes on the door to remind myself to turn off the stove, check the oven, make sure I had my phone, wallet, and keys. It was terrifying and debilitating. Then, one evening after putting the kids to bed, I sat down on the couch and felt like my joints were old and creaky, so stiff and painful.
It hit me. I knew this symptom. I called my doctor the next day and asked them to test me for Lyme Disease.
They didn’t want to test me. They asked if I’d had a tick bite. I said, yes, back in June(ish) of 2018 (over a year ago at the time) when we lived at Fort Drum. They didn’t want to test me, but I insisted, so they did. My numbers came back three days later sky-high and positive for Lyme Disease. I was immediately placed on a 14-day course of doxycycline, but my symptoms just seemed to get worse. When I called my doctor again, she admitted that she was unfamiliar with Lyme Disease and because of my symptoms, she suggested the best course of action was to go through the ER to be admitted to have a PICC line placed.
I went. After a long night of test after test, the ER doctor refused to admit me and told me…and I quote, “Let the Lyme run it’s course. Your potassium is low. That’s it. Eat a banana.” I went home that night feeling utterly defeated and completely out of my mind. I honestly began to wonder if it was all in my head. I was broken down and thought, well, I guess this is life now.
I was lucky though. The infectious diseases doctor I was supposed to meet at the hospital called me the next day, and I told her how I felt. She decided to make an appointment with me, and after witnessing my right-side weakness and slurring firsthand, she made the call herself. Because it was late-stage and I tested positive for two co-infections (Rocky Mountain Spotted Fever and Babesia), there was no way 14 days of oral medication would have treated it to the point of healing. So, she prescribed a PICC line, delivering ceftriaxone directly to the area surrounding my heart for the next 30 days. I learned to clean my PICC line, administer my own medication, sterilize equipment and, slowly but surely, regain feeling in my hands. The aching joints lessened. My body starting healing.
Beyond the physical healing, however, I learned that there’s a very real, very emotional side of invisible illnesses like Lyme Disease. I didn’t look sick. I looked like a new mother. I looked like the wife of a soldier working full-time during deployment with three children. And yet, I was sick. My body was waging war on itself, and nobody could see it. This is the reality of Lyme Disease; a disease that is misunderstood even in the medical community to this day. It’s emotional, it’s toxic, and it’s damaging – both on the body and on your mind.
Lyme Disease doesn’t discriminate. It can affect women, children, men, all races. It’s a disease that attacks without mercy and presents itself in many different ways. That telltale bullseye you’ve heard about? Many people never get it. While largely prevalent in East Coast areas, it is found throughout the US, and the CDC estimates that nearly 300,000 people are diagnosed with Lyme Disease each year. That’s more than 1.5 times the number of women diagnosed with breast cancer each year. However, because Lyme is difficult to diagnose, that number may actually be much higher. Essentially, my story is just one of many, and I am not alone.
To this day, Lyme remains the elephant in the room for so many people. It doesn’t just “go away,” and it’s not a simple illness. So, I urge you. Educate yourself about Lyme Disease. Learn the symptoms. Learn the risk factors. Above all else though, as in all things, advocate for yourself. You know your body best, and if you feel something is wrong, don’t stop until you get to the bottom of it. It could save your life.