Looooooong day. I hardly slept last night. Got up, took my meds, went back to bed for half an hour. Then it was time for a shower, then getting dressed which is wicked painful with my bum arm. It took me several sweeps of the apartment to gather up my CPAP, the tote for it, my chromebook, paperwork, instructions to the doc’s office, etc.
Just as I got a block from TRAX, the train pulled up and out. Soooo…I spent the next 10 minutes taking pics in Washington Park.
By the time I got to the U, I had time to go in and schedule my next neuro-opthalmologist appointment at Moran, then go up to the clinics and make an appointment to see the gastroenterologist. Then I waited outside for the black campus shuttle bus. I have told scary stories about my trips in those buses! I HATE going up to the industrial maze, with outlying clinics, labs and a nightmare road layout.
The bus driver had no clue where I was going, so I handed him my written notes. He still didn’t know, so he ran to ask another bus driver. Then he had no clue how to operate the wheelchair lift and had to ask another guy. He did not tie my chair down. I figured he did not know how. He did surprise me by taking me right to the door of where I needed to go! Last year the driver pulled up to a steep grassy slope and put down the lift. No sidewalks, no curb cuts. Scared the crap out of me.
I went to see the sleep doc. He is always nice to me. He was worried about my myasthenia gravis. My voice was hard to understand, my eye had slammed shut, and he had walked around the corner just when I was coming out of the bathroom and hitting the walls on my way to my chair. The doc was adamant that I need a neuro. I told him I liked the last one, but the idiot neuro had called the good neuro and told him to send me back to them. I explained to the sleep doc about the new (HCC) on 4 of my diagnoses, including MG. I said it was pretty ironic that they try to deny I have MG and deny my care, while at the same time making sure they get paid extra for me having it 😛 We talked about MG way more than sleep apnea. He wrote down 2 people who he said were good neuros and told me to try them. I explained I had to stay in the Healthy U network. I don’t think he really understood. Came home to discover those docs are at Intermountain…..definitely not covered by my insurance. Sigh…
So, back to talking to the sleep doc’s nurse or coordinator or whatever she was. They want me to do an overnight oximetry tonight. She wanted the machine back by noon tomorrow. I told her how long the whole complicated trip is. I also said how happy I was that today’s bus driver left me at the door instead of up a hill on grass, with a curb to hop. She got ripping mad. I had no idea they were supposed to leave me at the door every time! I told her about sliding in the bus because they never tie me down. Whoa! I unleashed a dervish! She called to have a bus come get me and she bitched out someone on the phone, then the poor, innocent guy who came to get me got it, too. He was on the radio when I got outside….calling headquarters to learn how to use the wheelchair lift! I don’t think they bother to train people. Just hand them the keys to drive around.
I had 10 minutes to chill out before TRAX took off for downtown, so I took some pics. Looking down over the city, the trees and grass make the whole valley green. The mountain snow was gleaming in the sun 🙂
I was sooooo tired coming home. Heck, I barely remember the trip on TRAX or wheeling it home. My arm hurt….and every other part of me hurt. I have been a zombie for the last 6 hours.
More another time, I think my brain cells just went to be without me….
carolee888 said:
I love all pictures, I miss tulips so much. We had them everywhere in Indiana. Haven’t seen any in Texas. They are as hard to find as cardinals in Southern California.
Your MG problem just doesn’t make sense. I think it a way of cutting the budget which probably gets them cash awards for performance. That figures that the best doctors are in a different network.
That makes me so mad!! It sounds like there is no training for bus drivers!
Your day is so frustrating!!!!
Felt awful by the time I went to the hemo/onc. I forgot to ask her about the 24 hr urine test that she says I should have once a year. Yesterday, all my joints here. I stopped to think about where, the weird thing was that all of them, neck, hand, arms, leg, ankle and back joint hurt. I have been taking more and more Extra Strength Tylenol. Today, because of the tylenol, my joint are not screaming at me in such volume, not my muscles are. I want to take a day off and do nothing but have a lot to do so will be doing it in slow motion. Pain doctor tomorrow. I will have to remember not to use the restroom before the appointment because all the pain doctors screen for addicts!
New York’s decisipn time is tonight,