As soon as I published the last blog post, I went to bed. I seem to be in a 2 hour nap phase. I liked the 4 hour naps better. What woke me up was my A/C going nuts. I had closed the windows against the dust storm and turned on the A/C before going to sleep. Darn thing iced up. This was the first time I turned on air conditioning this year. So….I opened the window back up and turned on the box fan again. I went to bed cold when it was warm outside and woke up burning up with the A/C on. My body is being contrary.
My head is really swollen. I went to itch behind my ears and my reading glasses have left about half inch deep pits in my head. I keep taking my glasses off just to feel them. They are each deep enough pits so my index finger goes as deep as the first knuckle. Geezum crow! I have gone a few days now without night sweats. I want them back….even though I hate them! My body does a terrible job regulating temperature and fluid without them😦
Again, the pressure in my port area is intense. Feels like it wants to pop. Stupid swelling is all over. I am being my usual bag of water self. Stupid angioedema! Stupid autonomic dysfunction! The edema has already moved down to the back of my head/upper neck. The more swollen I get, the lower my blood pressure goes, the dizzier I am. Ugh. Since I am awake and scared in the middle of the night, I decided to write in my blog to calm myself down.
I managed to eat one meal on Friday. It was a good one 2 pieces free bread, free spinach dip, 1 Roma tomato .16, cucumber .15, half of an avocado .39, 2 slices Havarti .50, turkey .75 for a total of $1.95.
Huh. It has been a couple of hours. The edema in my head, neck and chest is gone….as if it never happened. I feel better…not good….but better What a weird sensation. While the pain was intense, I wondered if I was going to have to call the ambulance. My port was poked way out and my whole left chest area was on fire. Now my feet are tightly swollen. It took hours to move down there. Now move out!
I hope I get sleepy soon. It’s after 2 AM. Still 71 degrees outside. There have been a few more big wind gusts. If this system goes east, I feel sorry for the midwest. Oh, oh….I just looked at the southwest radar. Here comes rain, heavy rain, ice and snow! But then again, the weather is going north and east. A lot of that is going to miss SLC.
Geeze…I just went from burning up to major goosebumps. I am confused. I need a new internal thermostat. I don’t feel so good. Groan……. Moan………
It was another rough night. I was up every hour or less to go pee. Wore me out. This morning and until well after noon, I was supremely queasy. No way did I want to eat! I finally had a banana with my second dose of meds. I went outside in the wind to take some flower and sky pics. I felt awful the whole time.
Tonight, my daughter called. My voice is not very intelligible. Sigh…. I talked….or actually mostly listened for a long time. Then I had to pee. When I stood up from my not-so-comfy chair, I had an oops moment. By the time I got to the bathroom, I had peed my pants. This makes me very sad😦 I have thought about mentioning my new problem day after day, but chickened out. Each time I cross the bathroom threshold, I start to lose control of my bladder. Sometimes it almost happens as I first get up from my chair. I have dreaded this day for forever. I was hoping it would not happen to me.
For a long time, I have counted myself lucky because I have no trouble holding back pee as long as I am sitting. I can endure needing to go for quite awhile as long as I am sitting in my power chair. It’s when I stand up that all bets are off. Losing bladder control is a symptom of several of my stupid diseases. An awful lot of people on my support groups mention it. I am hoping that when I am stronger and less sick, this problem will disappear! At least it’s not my other sphincter, too!!!
In the hospital, after my hysterectomy, I was not allowed out of bed without a nurse. No one came when I pushed the button one day. I really had to go. Finally I stood up on my own. Gush! I sobbed and sobbed. It did not happen again. Now this problem lately. I am not amused😦 It’s hard to fight neurological problems. I need to get over-all better.
Olive has been trying to cheer me up.