In 2011, while in grad school, I was out on a daily run and got a tick bite. Tick bites are a frequent occurrence in the Northeast. I’ve had 50 in my lifetime and most were inconsequential.........until that fateful day.
Shortly after the bite I developed a high fever. It was 105 with a rash that covered my entire body. I went to a doctor, and was tested and treated for Lyme but my symptoms continued to worsen. In the weeks and months to come I developed an inability to feel my skin or play my violin which was devastating since music was my educational and career focus.
In the months to follow I began to notice that my heart rate was extremely irregular. I was spiking up to 200 bpm at a walk as a trained runner and dropping into the 30’s on other days. The same was happening with my blood glucose. Although I was not diabetic, I had spikes of 400 and dropped as low as the 20’s. My blood pressure was also swinging dangerously low. I couldn’t even eat or stand up without a severe plummet that made me very sick. I lost 50lbs due to being unable to eat without severe hypotension. Most doctors had no idea what was happening or how to help. The systems affected seemed broad and unrelated. I was left without answers for several years.
I eventually was able to start consulting with specialists in larger hospitals who were willing to help with a complex case. That often meant leaving my rural area for advanced tests. I was diagnosed with autonomic neuropathy. Autonomic neuropathy is a condition in which the nerves that control autonomic functions (blood pressure, heart rate, temperature, glucose, and sensory ability in my skin) are damaged and don’t work. In my case it was likely due to an immune response to the initial infection, but unfortunately the damage is permanent.
My heart is now 100% paced by a pacemaker after it stopped several years ago. My blood pressure is controlled by IV therapy through a port and a subcutaneous pump of a blood pressure raising medication. My glucose is monitored by a tiny implanted sensor so that I’m warned of dangerous lows. I’m no longer a “normal” person, and unfortunately there are very few similar cases for which to gain support or insight. After I received a pacemaker, many people whom also have pacemakers assumed I would be cured and have life changing improvement like they have. Unfortunately that’s not the case. The pacemaker keeps my heart from stopping but does not reverse the effects of nerve damage which continue to cause chaos on a daily basis.
I’ve had to learn quickly to adapt. Managing symptoms is a daily battle. Slacking off is not an option as it can quickly result in a dangerous flareup. There are days that I’m very tired and upset that this has happened to me. I do my best to use my anger and frustration to toughen up, get up, and refocus on an activity I enjoy......running.
Throughout the years, one of my main coping mechanisms both physically and mentally is running. With the help of medical technology I am still able to run competitively. I’m one of the only pacemaker/autonomic patients to place against the healthy in snowshoe, road, mountain and trail running through the national level. The effort level required to maintain competitiveness amidst autonomic neuropathy is 1000x what it was as a healthy person. My pacemaker unfortunately has major flaws in programming ability for runners. It doesn’t allow me to run uphill so I have had to become an insane descender to make up for it. Mid race I can get a crash in blood pressure or glucose which I must always be prepared for. I walk a fine line at every race never sure of the exact threshold that will push my body too far and result in a crash and hospitalization.
One thing I’ve learned throughout this is to make sure to self advocate. If you feel something is wrong, don’t stop searching for answers. Don’t fall victim to stereotypes in healthcare based on age, gender or athleticism. Also do your best to avoid and stand up to online bullying (which is common even amongst the adult population in many health groups). Not all illnesses are visible, and not all answers/diagnoses are simple. Do your best to keep only positive and supportive people around you in both the medical and social realms.