We broke a record today for high temperature. 65 degrees! I left home prepared. I wore my Birkenstocks :-) On the way home…..I didn’t even wear a coat! Yup, that was exciting! :-)
My trip to the doctor’s office was STRESSFUL. On a UTA bus, my wheelchair has to be tied down at 4 points. This was the first time I ever got on a big bus that didn’t have a long enough area between seats to let my power chair fit in the alloted space. I could only get held down at 3 spots and my chair took up most of the aisle. The way it goes is that while the driver is doing tie downs, they ask where I am going. That way they know when to come untie me and put out the ramp. The guy repeated the address a couple of times, then promptly forgot me. I had to go to the end of his route, wait 10 minutes and circle around again. Then where he told me I was, was totally wrong.
I flagged down a nice motorist who tried to help, but he didn’t know what building I was looking for. I think this part of the world is called “research park”. I HATE when I see a doc up there. There are no curb cuts on sidewalks and much of the area doesn’t even have sidewalks. Bus stops let off passengers uphill onto grass, with no way to get off the curb. Good thing I left early!!!! I was at least 10 minutes late for my appointment, as is. And luckily, they tell you to get there too early! I was frazzled by the time I came through the door.
I love that particular doctor. He is nice AND smart. I hadn’t seen him in a couple of years. It was the first time they downloaded info from my CPAP. He says I have almost NO episodes of apnea! I have lots without the CPAP. He is friends with my friend, the pulmonologist. He was amazed I have known her since I was 18 :-) Of course, my voice was very broken during my appointment. Sooooooo frustrating! He knows the spasmodic dysphonia doc I see soon. He says I will like him :-)
Then I was sent in to have my headgear adjusted. That woman gave me a cool new device. It’s not a mask, exactly. Let’s see if I can find a picture….
Those protrusions go up my nose, instead of a mask covering my whole nose. When I lived in Florida, I had nasal pillows and hated them. The new technology is much better :-) I only tried the mask for a few minutes in the office. We will see how I feel about it tomorrow morning.
The woman who gave me the mask says she hears lots of people with voices similar to mine. She says people with neuromuscular diseases usually need CPAPS, so they see many of us. I felt better knowing I wasn’t quite the freak of nature that I thought :-)
Then I had to leave by going down the road, but this time there was more traffic. Most people driving were very, very rude :-( I felt like I was in danger. I decided to take a university bus to the hospital. I needed to use their handicap bathroom! It was about a month ago when I took the darn black bus last time. Then, the guy had to manually crank up the ramp….then he went around a corner so fast that I did 360’s inside the bus. This time, I again had to have the guy use the hand crank. He said it’s because the lift doesn’t work well from grass. I made it to the hospital with only minimum sliding around in the bus.
Get to the special bathroom and someone was ensconced in the handicap stall. I waited about 10 minutes and yelled in and asked if she was OK. It was a very pregnant woman with a bag of her belongings. Not sure what the story was, but she was basically hiding out in there, not using the facilities. I had reached the endurance limit for crossing my legs. Sigh….
Then I went to the hospital cafeteria and blew some money. I didn’t have breakfast or lunch and was getting very dizzy. Mmmmmm…..I had a meatball calzone :-) I sat there using my chromebook and got a killer headache. Then I put the computer away and slung my messenger bag over the back. I got instantly weak and my left eye drooped shut. While going down the elevator towards TRAX, I realized it was time to give in and buy an eye patch. I went over to the Moran Eye Center. Only $2.33. The second I put on the patch, my killer headache went away and my queasiness level plummeted. Dang! I wish I had bought the darn thing sooner!
When my eyes twitch and droop, I get double vision. So far my theory is that my MG muscles are trying so hard to work and focus, that it gives me a headache and makes me sick to my stomach. Even MORE amazing, was that the next time I tried to talk, my voice worked. Wow! I need to study up about what is happening.
A block from my apartment, I found my laundry lady looking wicked bad distraught. She was with another tenant and scuffing through the grass, their heads down. I wondered what was up. It didn’t take long to find out. The apartment building was buzzing. I don’t know what the truth is, just the gist of things. After not being here in a long time, The Stomper seems to be back. She glared at me a couple of days ago. There was some sort of altercation between my laundry lady, The Stomper and her abused boyfriend. Cops were called. I happened to be in the lobby when the manager had the couple in his office….with the doors locked. Whatever happened, those people are trouble. I will be very disappointed if they are not kicked out. The police have been here before because of them.
As I sat in the lobby, lots of people came over to ask what was wrong with my eye. I said nothing! The patch was making me better :-) My voice worked the whole time. One woman said she felt so sorry for me the other day when I could hardly be understood. Sigh….
When I got back in the apartment, it was hard to navigate around with monocular vision. I definitely appreciate binocular, 3D vision even more than I did before. It’s also hard to read with only one eye. From now on, when I feel the killer headache creeping up, I will put the patch on ASAP. My body seems to appreciate the reprieve.
I just looked up what the sleep doc wrote about today’s appointment. He says my diagnosis is myasthenia gravis, obesity and a respiratory disorder. That sounds awfully generic. What respiratory disorder??? I also have to go to the hospital for an arterial blood gas and some sort of pulmonary test. He says my past tests show too much carbon dioxide in my lungs during the day. I HATE having a needle stuck into my artery! I met a guy there who was really good at it. I need him again.
The medical records I have access to online are a mere fraction of the ones the doc can see. It was fascinating to watch the sleep doc try to sift through hundreds of pages. I kept commenting on the good and the idiot docs as he got to their records. He asked me who the idiot neuro was. I LOVED watching his face when I told him. It seems that hardly anyone likes or respects the guy. We were talking about all I had been through since I saw him last. I was wearing my velvet skirt that really shows my hernia. I pulled up my shirt and showed him the fairly flat left side of my belly and the huge 9 month pregnant sized right side. He looked amazed. As he should! I am always amazed!!!
The sores and wicked intense itchiness on my head are increasing exponentially. The same itches on my face are making me look like a meth addict. Bright red sores. Some of them have rings around them. I see yet another doc appointment in my future. Sigh…… My guess is it’s autoimmune related since they popped out the same time as my latest butterfly rash. I have had the head sores before, but never the facial ones. Eeeeeewwwwww!
Oh, I have blathered on enough. Good night :-)