Where to start? Wednesday night I was given a blow up bed. It’s one of the stupidest things I have ever seen or heard. In 2013, when I was at Huntsman, they had me in a horrid blow-up bed that hurt like heck to get in and out of. The one this time had a giant blower motor on the floor. Seriously, it made more noise that a propeller plane. I was given ear plugs with the bed. It was still very, very loud. If I was lucky, I might have slept a whole 4 hours.
I spent the morning begging for a shower. It was my first one since I have been here. Ewwwwwww! Then I was whisked to a new room. I told the nice guy nurse that I would rather sleep on the floor than the same bed for another night. He got me a real one that makes NO noise. It took a long time to get my IVIg. This is a mostly surgical floor and wow…..it’s busy! I feel bad for the harried nurses and their assistants.
Ohhhhh…..let me go back. On Wednesday I had a nice, but ditzy nurse. She decided my infusion was too slow and doubled the infusion rate. I had what must have been the worst migraine of my life. The roots of my teeth were in agony. The nurse ran her finger along my jawline and I at first jumped, then almost fainted from the pain. She got me a hot, wet towel for my head and an ice pack for behind my neck. Every shred of light or bit of noise was excruciating. THEN they turned the bed on 😮 Last time my head hurt THAT bad, it turned into aseptic meningitis. When I woke up at 2:30 AM, the nylon bed was soaked in sweat and most of my head pain was gone! I was surprised.
Today they ran the first half a bottle at 50, then never went past 100. It takes a loooooooong time for my infusion at that rate. It got done at 10 PM. Around 6 or 7 I had a pressure headache. I used to get those a lot in Vermont. The only thing that relieves them is pounding myself on the head. I saw people walk by and stare, but no way, no how, was I going to stop. After more than an hour, I had it mostly pounded into oblivion. Those are the headaches that always got better with a spinal tap.
Today I have had all nice nurses and aides. Yesterday I got some that could ONLY be described as crazy bitches 😦 Of course maybe the monster migraine didn’t help their popularity from my point of view. I can be a fairly nice person….until pushed. When one of the aides started screaming at me, I banned her from my room. Why did her bad day have to collide with my migraine??? I hadn’t even done anything. She had never met me and came in yelling. I heard her boss rip her a new one. Sigh…..
Most of today’s people were so much fun that they totally made up for the crazies. I saw lots of specialized hospital people. I have mentioned before that when my voice is broken, people equate that with having a low IQ. I get treated TOTALLY differently when my voice works. When I got to the ER, they didn’t know what to make of me. The triage nurse told everyone I was having a stroke. On my way to the hospital, the left side of my body, right down the middle, had become numb. I could not move that side of my mouth or tongue and that eye was mostly shut. I told the ER nurse I thought it was just MG, but in the past I have had TIA’s and strokes….it just didn’t feel like them. They did a CT of my head and x-ray of my lungs.
I was right across from the doctor’s station. I could hear everything said. Neither doc could remember much of anything they had ever learned about MG and were kind of freaking out that here I was to deal with. Luckily the neuro’s office really did make my records available to them. Nobody said I didn’t have MG, it was all in my head, or that I had Munchausen’s. At least that was in my favor 🙂 My head was very swollen up and very red. That concerned them a whole lot. Remember the salivary glands at home?
When the nurse accessed my port and injected saline, the salivary gland where the jaw moves, but more into the neck, instantly swelled up and got HOT. I gave the nurse a scared face and said something was wrong. I pushed on the throbbing spot on my neck. My eye opened, my voice almost worked and something flew from the side of my mouth, to my tongue. It was about the size of a pepper seed. The docs much later decided it was a salivary stone. What the heck did that voice doc do to me last Wednesday? He woke up something in all my salivary glands!
Yesterday my voice would sometimes revert back to dysphonia when I was weak. Today it worked all day 🙂 A woman came in to give me a cognitive assessment. Some of it was corny, some fun and the backwards stuff was just plain annoying and made my head want to explode. The woman assessing me said nobody had ever done it as fast as me. I told her that was thanks to all the solumedrol and IVIg in me. If I had been given the test on Tuesday, I would have failed miserably. I felt very exuberant and excited to have found some of my missing brain cells 🙂
Over and over, each new nurse tells me she has read my chart and can’t believe it 🙂 My health problems and my quick recoveries tend to do that to people. I am still miffed that I had to slog through the last 3 years without IVIg! Sigh….. My neuro could not stop smiling about my progress. I love the old guy doc here who is the hospitalist. He is never quite sure what to think of me. Even he hasn’t seen many people transform like I have.
All along they have been giving me heparin shots so I don’t get blood clots. Tonight my belly wound was itchy. I absentmindedly itched it. Blood gushed out and then I remembered I was on anticoagulants. Sigh…. A nurse had to go get some special tape and squishy Vaseline dressings and put it on my belly wound. Now it itches worse! 😮
I wish I could remember all the evaluations and consultations I had today. One woman was trying to get me to go to a rehab center after here. I told her no way in heck! The cancer hospital tried that nightmare with me. I said I would be happy to do physical therapy rehab at my apartment or as an outpatient. I cannot stand being a captive here any longer than necessary. I flunk being docile and compliant. Heck, I wouldn’t be alive today if that was my personality.
My nurse at the moment is from Ethiopia. She is the funnest one yet. We have a mutual admiration thing going on. Her sister works at the Blue Nile, an Ethiopian restaurant right near my apartment. I told her I always wanted to go there, but the front door has a step and is not handicap accessible. She had never thought of that before. Sadly, neither have most people about public and semi-public places.
In half an hour, I will have been up 24 hours straight. I need to tone down my steroid high and try to sleep. Two more days of IVIg’s yet to go…..