We got to Concord ER where they rushed me into a trauma room and arranged for me to get an IV from an EMT student. They ordered a head CT and the basics of blood tests and urine tests to make sure I wasn't drugged or prego. Even though you can give emergency room doctors the best reasons why there is no chance of you being on drugs they still have to check as it is standard protocol. Once they decided all my tests were clear and they didn't know what to do with me they fed me terrible cafeteria food and ordered an ambulance to transport me to Boston Children's Hospital since we were 100% sure that Dartmouth did not believe in Chronic forms of Lyme Disease. I don't remember the ambulance ride aside from singing 'Take Me Out To The Ball Game' as we passed Fenway Park in Boston. Once I got there we got settled into a crumby ER room and waited for 7 hours just to talk to one neurologist and fail the neurology test miserably. Then they hospitalized me upstairs and we got settled in for bed at 4:30 AM on Sunday. After a few hours of sleep we heard from a few doctors and got blood drawn but I was already feeling a tad bit better. They took me off all my medications with the theory that 'Not even the best pharmacist can tell if 25 medications are colliding or not, they can only tell if one messes with one, not the entire webbing network of my 26 including over the counter medications and supplements'. They also changed their minds and didn't run the lumbar puncture (lp) or spinal tap, and the MRI they wanted to run. Simply, I had improved a tad bit so it must not be neurological.
On Monday I woke up feeling much better, did some physical therapy and walked down to the Boston Children's Garden, and I spoke with a psychiatrist who labeled me as over bubbly (which for the record is an extreme compliment and he did not even realize it). I did an OT evaluation which determined OT would be helpful but never fell through. I introduced myself to my neighbor/room mate who had a lot of stomach pain that brought her to the hospital and was given the same excuse that her body was over stressed and wired wrong, and there was no actual reason for her pain. That night we were told I'd be going home Tuesday afternoon and my room mate moved rooms so we had a private suite for the last night. I was woken up by a neurologist at 7:30 AM, who decided that since my neurological exam first thing in the morning, before I could even see straight, was perfectly fine I was okay. All I can say is that is the most ridiculous excuse ever. They had a large meeting with my entire team of doctors that all shared and discussed theories of me being over stressed and wired wrong and crazy, thankfully which I was not present for. Then we waited a few hours to be released and 'yessed' them to death so we could get the heck out of this place that believed that I never had Lyme and was treated incorrectly by the only doctors that ever really listened to me.
We got home at 9:30 PM on Tuesday and I crashed into my comfy bed, thankful for no IV in my arm and no people prodding me all night. From here we would just push forward and try to see if maybe the medicine theory could be right, or maybe the stress theory was close to correct. For now we just would wait and see.
Lyme, Fibromyalgia & More
1 week ago