Last night sucked. I fell asleep great….I just could not stay asleep. Looks like tonight will be more of the same. I am a big old exhausted, hurt mess. I slept 3 1/2 hours at first, sat up for 2 1/2 hours, then back to sleep for 3 1/2 more hours. Already tonight I slept for 2 1/2 hours and am back awake. I have way overdone what I can easily endure. I was gone from home a long time again today. I took TRAX to the hospital and got another one of those evil little shuttle buses back to the sleep doc’s office to take back the oximeter. Again….the driver did not tie down my chair. I thought he was getting back in to do that, but instead he drove off. This guy was both grouchy and a horrible driver. He hit every curb he could 😦 Never ever have I been so car sick. I don’t know how I made it to my stop without barfing all over.

Well….there was no way in heck that I was willing to go back on one of those shuttles. I wheeled it back to the hospital. But that part of the campus does not have curb cuts. I had to go real slow off the curb to the road. Then down the road quite awhile. Like an idiot, I got back on a sidewalk, then about a quarter of a mile later, got to the end of the sidewalk….a steep set of stairs! There were cars parked all along and the curb was way high up. There was nothing I could do but turn around and backtrack. I found a spot with a car not parked, got out of my chair, and ever so slowly drove over the cliff. That bottomed out the chair and I had to push it over the edge. My back still hurts from that fiasco.

I was able to go in the neurosicences building, take an elevator, zoom across an inside bridge to the regular hospital, zoom to the gastro clinic, and I signed in at exactly to the minute when I was supposed to be there. I was shaking. Got to see the doc right away. She looked at my humongous hernia and said she was really sorry, but there was nothing that could be done. I already knew that, but it was hard to hear. I burst into tears. I told her at least now I could tell the other docs to quit harassing me.

That made her almost cry. She apologized a zillion times. I think it stressed her out more than me. She decided to get me another abdominal belly band and wrote a prescription for it. She said there are 2 new surgeons and that I should see one of them to see if they have something different to say from the last 2 surgeons, who said I had an 80 to 90% of dying from the hernia repair operation. It was also interesting to watch her face when I explained the (HCC) after myasthenia gravis and my lack of care by the evil neuro department. She had better control of her emotions than yesterday’s doc, but when I told her I did finally get 5 IVIgs last year, it came with a verbal outburst and look of incredulousness. She was happy I got that much.

Yesterday my BP was 137/66. Today it was 141/55. Those are some weird numbers. From what I understand, the top numbers are high from all the pain I am in. And the bottom numbers are why I am so incredibly dizzy and queasy. Oh, look, an article from our local paper about my BP. Because my legs have hung down for 2 days while in my wheelchair, my feet and legs are hugely swollen. Which came first? The weid BP or the heart failure? Thank goodness it’s not like the old days in Vermont when I had full blown CHF.

I was overwhelmed with gratefulness by the time I got home today. Too much stress!!!!!! I managed to force myself to stay awake a couple of hours, then napped. But I am in so much pain and soooo queasy, that I could not stay asleep. These pics are from yesterday. Today I forgot both my cellphone and camera. Dang!


Monday, I got a new spot of the deep sort of angioedema. It’s creepy that it keeps happening so the swelling goes into the orbit of my eye. Pics don’t tell the whole story. When touching the red spots, they are thick under the skin…and the outside skin is very rough. The pouch under my eye is hard from the swelling. Lately my eyebrows have been itchy and the eyebrow hair has been falling out 😮

The skin all around my fingernails is red, peeling and swollen. It’s one of those things that’s cyclical for me. Also the skin above all my fingernails is peeling off. I don’t remember which autoimmune disease that goes with. Perhaps MCTD? I seem to be getting a lot of symptoms from that and Sjogren’s lately.

I am most worried about what’s going on in my arms. Still burning on the surface and lumpy under the skin and a very creepy itch deep down. It goes right to my guts. Yuck.

Another weird imponderable is my butt. Ever since I have been complaining to the wheelchair people about the way I list to the left, I have been paying more attention. I do think part of the problem is the wheelchair seat cushion, but I also think my left butt cheek is considerably smaller than the right. Now the question is….has the right side swollen, or has the left side lost muscle? I think something happened to my left side. It’s bonier and hurts. Now what???

Wednesday morning I will have a visitor. The very nice PT who evaluated me for the wheelchair in 2012 is going to do an updated eval so I can get a new chair. Every time I think of her, I think of her advice. She said not to say I walk like a drunk, but to say “I have ataxia”. Snicker…