Finding a place to start my story is proving to be harder than I had anticipated. I was always a kind of weak child, complained of chest pain and being dizzy a lot but doctors always insisted I was trying to get attention. Nothing more. When I was 7 I got Scarlett fever and was confined to a bed for nearly 6 months. My body didn’t respond to antibiotics the way I was expected to. At the end doctors started with the same line, “Your child is faking being sick. She doesn’t want to go to school.” Needless to say, my mother started listening and punished me anytime I complained of not feeling well from then on out. I stopped admitting to feeling weak. I had frequent migraines and joint pain, my skin would flush for no reason. My mom started calling that my “tell” that I was lying about something.
I obviously grew up, accustomed to hiding health issues. I regularly was hospitalized for pneumonia or chronic bronchitis though. Some things you can’t hide away. In 2013 I was bitten by a tick and developed the bullseye rash and flu like symptoms. My doctor at that time refused to test for Lyme because he said it was too rare. I was fine. 2 weeks later I started a new job as a manager of a restaurant. I passed out for the first time while being introduced to my employees. That was my first time in an ambulance. After that I would pass out 4 to 15 times a day. I would be sent to the ER three or more times a week and was quickly diagnosed with POTS (postural orthostatic tachycardia syndrome) by a tilt table test. I asked if the tick bite caused it and received a shoulder shrug. “Maybe. Who knows.”
I was seen by a cardiologist but because I had no health insurance and was unable to work at that point, there wasn’t much they could do. I couldn’t pay for a visit and the quick “charity visit” they would allow didn’t give the doctor time to listen. I was told to get used to my new life. They tried propanolol. I had seizures. Steroids. Seizures. Salt pills. Just made me itchy. Was told to exercise. I fractured my cheek bone and eye socket from passing out. Injury after injury. Use a walker. Don’t use a wheelchair. Walk more. Don’t walk alone. Everything contradictory and unhelpful.
Fast forward three years and I still faint nearly daily. I was told I “probably” have lupus but “let’s wait for formal testing until insurance kicks in.” That is this week thankfully. I cannot work because no one will hire someone who faints every day. I am in so much pain most days that I have become a bitter hateful woman. I take no medications and get no relief. Doctors in my area tilt their heads and ask “what is POTS exactly” when I try to get help. I’m lost at this point.
In addition, two years ago, because I was unable to work and I have no family, I became homeless. At first I was living in my car. I had to leave my two children with my ex husband because it was winter and I didn’t want them living like that because I couldn’t provide for them. I ended up in a homeless shelter and after a few months was able to get help finding a home. At that point though, my ex husband had hired a bulldog lawyer and took me to court to keep my children from me. Fast forward to now, I still cannot work but my fiancé provides for us and I am only allowed to see my daughters every other weekend. The judge told me that if my condition was serious enough to cause me to lose my home then it was too serious to allow me to care for my children full time. That’s the most heartbreaking thing about this. I never thought a illness could steal my kids.