I want to do this blog and my goal is two things - make it honest and daily. Daily hasn't been so easy. My body, mind, fingers don't always cooperate. I also always want to be positive. I am positive most days. Today I am having a hard time. The last weekend has been a major change. I can't tell you what happened when - I can say that it was rough. The MAJOR highlights were Jaimie, Nick and John came to visit, brought beautiful cards, flowers, gifts and most importantly themselves we enjoyed wonderful conversation and a delicious dinner they grabbed for us from California Pizza Kitchen.
Saturday my Dad came by in the morning and sat with me. Later in the morning/lunch time, Correen and Breanna came by - we visited, they went shopping while I rested. When they came back I was in the middle of a pretty good seizure/episode. NOTE: Technically we don't call them seizures because they have ruled out epilepsy. Correen supported me through the rest of the event - just being there, rubbing my arms, back gently. I was so embarrassed to be what I was at that moment yet I have never been so thankful for another human just being there by choice - and seeing I didn't scare her away. Finally my new neurologist has been assigned to the case (We had to fire the original one for multiple reasons). His weekend cover came in during the "episode" and immediately ordered 1mg IV to stop it. Within 20 minutes I felt beat up and worn out as usual. I believe I had another one that night but honestly I can't remember. The days and what happens is all jumbling together.
Sunday is a little bit of a blur. My mom and dad came over in the morning. That was nice because hadn't seen my mom in a couple weeks while she was taking care of my grandparents. The three of us had lunch - and of course of soft serve. My favorite is the bigger the better from downstairs. Brett returned some point after lunch. At dinner - I had a gross combo of food on my dinner tray. Food that I for sure wouldn't have ordered. I'm lucky because Brett went downstairs and got me something yummy. I can't breakdown exactly when they all happened, but I had a total of 4 "not seizure" events between Saturday and Sunday. by the time the last one finished last night it was midnight. Luckily our new neurologists weekend on-call didn't believe "Just work it out" and prescribed 1 mg ativan by IV. They have never worked themselves out alone. We have always had to use medication to stop them.
I am struggling today because for some reason after four attacks in just around 24 hours my body hurts everywhere. I feel frustration with my medical staff because they don't have answers, they keep telling me what it is NOT, the "not seizures" just keep getting more frequent. In addition to all this happy new stuff, I still haven't figured out my pelvic pain - I have learned that thrashing around in a bed harder than I ever thought possible - is NOT good pain treatment for it, not are the alternative twisted back spasms that the "not seizures" bring. I'm taking a list of drugs that has my brain so muted - however I seem to still be wide awake and hurting like hell.
Because the doctors won't make a fucking decision on what the hell is going on with me - I am going to get fucked again. My doctor put me on the neurology floor for a reason. He gave me a very large room with a sitting area, dining table. The nurses on this floor have been perfect. They understand what is happening and what I am experiencing. They are trained for it. Thursday they are moving the entire floor to allow for renovations. Apparently it has been determined that I am not going to stay with the unit because all I have is a a"medical problem' i.e. who knows what the fuck is wrong with me. So, as soon as possible they are planning to pack up me and all my shit and ship me to another floor. They won't understand my "not" seizures at all - if they even see people have seizures. So back to hell where I was the beginning of the stay. It's hard enough that the doctor's don't have a clue what is going on - the relief the whole time has been at minimum the nurses understand. Now we are back to square one in every shape and form.
I am crying and done with the day - it's not even noon.
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