When I went to bed at 8 PM last night, I was burning up. For maybe a week now, I have been having soaker night sweats. Yesterday was wicked painful. The lumps all over above my muscles hurt like crazy. Everything was twitching, buzzing, spasming, tremoring, zapping. It wears me out, causes me to sweat profusely and uses up most of my strength. As I type this, various fingers are spazing out and moving in directions of their own choosing. A challenge!
My belly continues to be worrisome. Not a day has gone by that I don’t feel my hernia rip a bit more. The further my intestines pop out from behind the fascia, the worse my elimination system gets. It feels like the biggest lump out is stopping the flow in my intestines. Sometimes my belly swells out impossibly huge 😮 After a few days, it starts moving again. That can’t be good.
Laughing and coughing have always made the hernia worse. Thanks to pollen and dust and other crud in the air, I have been sneezing more often. Sneezes make me see stars and almost pass out. The pain in my hernia gets unreal. For years I said I needed an exoskeleton because my joints didn’t work well. Now I need one to keep my guts in.
The morning started out with an ambulance, fire truck and fire chief car with full sirens and lights blazing in to the parking lot. Who now? I was too weak to stand at the window to see what was going on. I had a doc appointment today, but they cancelled it. Why is it that whenever I most want to see a doc, they all take off on vacation? I feel too icky to get to a doc on public transportation, anyways.
Speaking of transportation, I need to see if I can get my Paratransit restrictions changed. As it is now, I can only use Paratransit when the temperature is below 40 or above 80 degrees, if there’s snow and ice, if there are no curb cuts or sidewalks and something about distance more than 2 blocks. That must mean more than 2 blocks to a stop??? Any way, the biggest reason I wish I could use Paratransit is when I am so weak….not just because of weather. The biggest barrier is cost. I cannot afford $4 each way. What good is a program like this if it has so many barriers? I don’t know very many people who need it more than me. Sigh…..
I had been calling and calling. I finally got the Paratransit person. Of course she couldn’t understand me 😦 After a bunch of attempts, she told me to have my doctor FAX her a statement about my functionability and limitations. Hopefully the doc appointment next week doesn’t get cancelled! It really sucks that I can get a free bus pass for doc appointments, but no reduction in price for riding Paratransit. I feel more and more glued to my apartment.
There is only room for 2 wheelchairs on each big city bus. If those spots are filled, tough luck, you have to wait for the next one. When I go to the internist’s office, the buses only run once per hour. I will never forget the intense sun and heat the day the bus would not let me on. It was a very long time to the next bus.
Now that my ward meets earlier in the morning, the bishop offered to pay Paratransit costs for those of us in wheelchairs to get there. Too bad I am not eligible to ride Paratransit most of the time. Why is everything so frustrating?
I long to just bounce out of bed in the morning and do whatever I choose. I miss being a “regular old person”. Everything takes tons of planning and more energy and strength than I have.
I just went to FNB. I wore my Ugg boots and purple long underwear and was still cold. It’s breezy and gloomy. I was near the front of the line. The fake crab was dumpster dived. Not sure if I should really eat it? So…..grapes, lemon cake, crumpets, 3 apples, 2 zucchini, fake crab, milk, wheat bread.
I came in the door and talked to my friend, Gordon. Then wheeled around to read the dry erase board to find out what was going on in the community room. At that moment, 2 guys had a stretcher up and down, diagonal in the elevator and I watched them wheel it out. That’s when I realized they were undertakers and the stretcher held a dead body covered in blankets. Well, now I know why the emergency vehicles were here. I knew the woman, but not well. She only left her apartment to get her hair done every Saturday. She used to come to the monthly sacrament meeting in the community room, but she rarely said anything. A ghost all along.
Geeze! Another knock at my door. It was the oxygen man. He wanted to test my oxygen concentrator and write down the serial #. I was holding onto my bedroom door jamb with both hands, while watching him. My belly was right up against the jamb. I started choking. My body was already quite a ways away from the jamb because of my belly….like a woman 9 months pregnant. When I coughed and choked, my belly inflated like a big balloon. I was probably 6 to 8 inches further away from the jamb 😮 I knew the hernia was a problem, but that was scary and eye opening! What is that REALLY doing to me?
The whole going to FNB and back wore me out. I started falling asleep in my chair. Olive and I had a 4 hour nap. Still feeling wiped out.
President Obama is supposed to be here in SLC today. Before I went to sleep, he was on TV at the White House. I cannot imagine having enough energy to do all a president does. Way too much thinking and moving around required. Yesterday there were two of the classic black SUV’s out between this apartment and the DWS building. I wondered what was up, then heard the president was coming to this city. I thought he would stay out at the Air Force base where he is talking. It must be a real nightmare to make a hotel and a city safe for a presidential visit.
The first thing I remembered when I woke up, was watching the dead body go from the elevator, out the door. She didn’t look very big, she must have lost weight at the end. I hear she died in her sleep…..a good way to go.
Ahhh…here comes the president at 9 PM. He will be sleeping about 5 blocks from me. Yup they are showing the Secret Service black SUV’s on TV right now. Same ones that were here yesterday. Kind of scary to have so much stuff going on so close by.
See ya later….I hope…..