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For the last several weeks, I haven't done much more than walk to the bathroom, get myself food, and sit in bed. I haven't been able to work, go grocery shopping, make dinner, or even brush my daughter's hair some days. I do have days where I push myself and do more and I regret it instantly. I have been struggling with severe fatigue, weakness in my extremities, pain throughout my entire body, numbness, headaches, and the worst brain fog I've ever experienced. I've seen multiple doctors and spent hours in multiple emergency rooms. I was recently diagnosed with Fibromyalgia and referred to more specialists because it's believed that I have Long COVID that has turned into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
I have luckily gotten an appointment scheduled with one of few ME specialists in the country, Dr. Sarah Levine. I will have my initial appointment virtually on May 4th. Unfortunately, my insurance won't cover it and the initial appointment & testing costs $600-$800. This is before any treatment plan is put in place. On top of this, I will be seeing a couple doctors in Buffalo. Thankfully, my insurance will cover those appointments, but we still have the travel expenses to worry about.
We aren't ones who ask for help often. It's a very uncomfortable feeling for us. We have always prided ourselves on being able to take care of ourselves and our own problems. Today after really thinking about it, I decided to write this. I'm not asking for help for just myself. I'm asking for help for my daughter who doesn't understand why I can't get up and play with her. I'm asking for help for my family thats helping to take care of me and our house. I'm asking for help for my boyfriend, who has taken on all of my responsibilities on top of his. When these problems first began, I had no idea how much it was going to effect everyone around me. I'm asking for any help, anyone is willing to give me, at a chance at getting better.
Organizer
Nicole Delaney
Organizer
Bolivar, NY