Nov 15, 2018 Latest post:
Mar 17, 2019
In the summer of 2011, I became very ill in the midst of my final years of college studying to become a music teacher. An avid runner in the northeast US, I had gotten many tick bites without consequence until the one that ended my future.
It started quite suddenly with a severe fever (105) and a rash a few weeks after a tick had embedded itself in my abdomen. I couldn’t remove it easily and while I was trying I saw it deflate from fat to flat as it regurgitated it’s stomach contents along with Lyme disease and Babesiosis into my system.
Over the next few months I started losing the feeling in my hands which was terrifying as a professional musician. I could no longer feel my fingers to play an instrument that I had studied my entire life. Over time I started to notice my body weakening. I was developing several abnormal heart rhythms and getting very dizzy and nauseous. I had lost nearly 50lbs in a few months without changes in diet or exercise.
The next many years was an onslaught of hope that I’d meet a doctor who could cure me and crushing despair when all treatments failed and I continued to worsen. I had a few excellent physicians whom I am very grateful for, but many other terrible ones who at times made me question my sanity and why I kept trying.
Three years in, my heart stopped. I will never forget the feeling. I was sitting on my bed and suddenly felt an overwhelming sense of dread and doom. I felt like I was going to die; and briefly I did. I saw a flash of white and soon woke up very disoriented but fully aware that something terrible had just happened. I was also relieved that I had an implanted heart monitor and a cardiologist at the time that I respected and trusted. A month later I found out that my heart stopped that night and I was scheduled for a pacemaker. I am now 100% paced and the struggles of trying to learn to run at a competitive level with a pacemaker have been immense.
In addition to arrhythmias, Lyme has also left me with no control of my blood pressure. My blood pressure can suddenly and unexpectedly drop into the 50/30 range or lower. This makes me very ill. I rely on a subcutaneous medication pump to help regulate blood pressure and IV saline through a chest port when it gets out of control. The chest port saves me from a LOT of ER visits and the stress and aggravation that comes with that, but it also brings a very real risk of death by infection or blood clot. That risk is one that I willingly take because of how poor my quality of life is when I need saline and cannot access it.
This past year I also lost control of my glucose. My blood sugar can rise to over 400 and drop under 30 many times a day. This also makes me feel extremely weak and ill non-stop. Since I am not diabetic, I have no effective treatment beyond monitoring via continuous glucose monitor (Dexcom) to warn me of how close I am to fainting from a low.
The neuropathy also affects my ability to sense pain and temperature. I can’t feel my skin so I accidentally cut and burn my hands and feet fairly often. I also tend to inappropriately overheat in very cold weather or get very cold in hot weather. I’ve had quite a few nutritional deficiencies as well like severely low iron and anemia, low magnesium and phosphorus and low potassium on occasion.
A typical day for me is filled with chest pain, my pacemaker strongly snapping me at high rates (160bpm) to warn me of hypotension 10+x a day, nausea, my glucose alarm going off 20-30x, severe fatigue, hot flashes and severe chills, dizziness, poor appetite and bouts of extreme stress and sadness over what my life has become. On a good day, I’m up and functioning and unless I’m in a swimsuit you’d never know I have 5 medical devices implanted and keeping me upright. On a bad day, which are frequent, I’m so sick I can’t get up. Sometimes I can’t even get my IV fluids hooked up. I stay in bed and cry. I wish for help. I wish I had a specialist to help me. I wish I could go to a hospital where they had experience with my disorder. I wish I could feel better or get better permanently. I sleep, I give up for a while and then I try to force myself to fight it again for as long as I can until the next round of physical and mental exhaustion.
Throughout all my health obstacles, the one thing I’ve kept is my running. It helps me both physically and mentally. Over this past summer I’ve started to see glimpses of losing running as well. It’s been hard to cope with. What am I if I’m no longer able to teach what I devoted my life to? I’m no longer able to run well. I will never be a mother. I will always be sick and may get worse. These realistic feelings of a loss of worth are part of my illness that I struggle with daily.
I have started this site to speak candidly about the realities of living with a rare, serious chronic illness at a young age. I am not seeking to be an inspiration or a beacon of positivity in the midst of darkness. Rather, I am hoping that my entries reach other chronic illness patients who feel similarly so that they know they aren’t alone. It’s okay to feel sad, have give-up days, be angry, etc. Getting through each day knowing that you’ll never “get better” is a difficult yet very real aspect to living with chronic illness.