Monday, March 23rd
Sunday was not a great day for me. I was supposed to have had my catheter changed last Monday, but the doctor was on vacation. The area around my catheter felt very irritated, and I could not stop bypassing into my diaper. People are sometimes surprised that I can still pee with my catheter. They expect everything to go down the tube, but if I am sick and the pee really wants to come out, it will bypass the catheter and exit the old-fashioned way.
I finally stopped peeing after dinner and got to sleep. I started peeing again on Monday morning. Yikes! It was going to be a long week until the doctor returned next Monday to change my catheter. I told the nurse they should change me before the doctor goes on vacation, and they replied that they do not know when he will be gone. He goes to different care facilities, and I guess we get him when we get him. OK then.
M and Mom came by, and while I had mentioned to M that I have YouTube Premium for one month, I had forgotten to remind him that it was his day to pick a movie. This was a movie he had suggested after we watched Hooper. Hooper was originally titled The Stunt Man, and M thought it was a much better movie. Not to Mom. She got up and got ready to leave with 28 minutes left to go.
This 1980 film is directed by Richard Rush and stars Peter O'Toole, Steve Railsback, and a young Barbara Hershey. PO’T plays the irresponsible director of a movie starring BH and SR. SR was recruited after he witnessed an accident and is also on the run from the law. In true movie fashion, he blends in seamlessly and also becomes paired with BH to boot. I thought it was acceptable, better on second viewing, but I can't say I would recommend it. Peter O'Toole was the best thing about this movie. Still retains his ‘Arabian’ good looks.
I stayed up too late playing Wordscapes, which I had not done for a long time. And this is why, if I don‘t let the melatonin kick in, I can stay awake all night and not get sleepy. I probably got an hour of sleep right before they woke me up at 5:30 a.m.
Tuesday, March 24th
I was extremely tired all day, but I can‘t nap because then I will not go to sleep at night. So I just have a nothing day until I can sleep like a log and start fresh the next day. D1 came, and I forgot to text her last night to remind her to bring the roach stuff, so she didn’t have it with her. What she did do was show me what it was, and I ordered it on Amazon. It is supposed to be delivered to Mom by Friday, so yippee!
I also started taking my new supplement regimen tonight. As time goes on and I progress with my MS, I realize more and more how I am kind of falling apart. I should put that another way: I seem to be rather a fragile human. I had MRSA about eight years ago, before the pandemic, and I am now permanently colonized with bacteria. I basically exist in a perpetual state of being about to be sick. If I eat too many sweets or get too dehydrated, the bacteria take over my body.
The nutritionist I have been working with for 30 years now has kept my body strong. It has always been my choice to spend money on her. Now Mom and Pam are part of that decision, and I need to justify her expense. I am more completely documenting things so they can understand the difference she makes.
Wednesday, March 25th
I had my CNA make a short video of me moving my hand to document my starting point before I begin these supplements. Today was the rescheduled resident council meeting, so I got up in my chair to go downstairs for that. Before we left, I had time to have a short conversation with my neighbor since we are rarely both sitting up at the same time. I reiterated to her how much I like being her neighbor. I told her I treat her like how I would want my father to be treated. She clarified that she was not mentally ill. Got it.
The meeting was great as the new CEO for Leahi Hospital came to introduce himself. I introduced myself, gave him some background on me, and volunteered as someone who could write something and present it to the state legislature to help justify this hospital's expenses. He said he would remember that and give me a call. I told him I would be waiting. Great!
They always give us donuts after the meeting, and instead of foregoing it, I ate almost the whole thing. Just the kind of thing I really should not do, but my body did not rebel. I might be able to get away with it once, but any more gluten and I would be in trouble. I was OK to operate my chair all by myself going down to the meeting, but coming up, I needed help. Mom stopped by around 3 PM, and we called a friend from Maui and said hi to her. That night, a new resident who had transferred from a home on Maui arrived, and I got my bedtime pills at 11:30 PM instead of 9:30 PM. Yikes!
Thursday, March 26th
I got a call in the morning from E at Gammie Home Care about my wheelchair. Mom had spoken with them earlier, and I asked when someone could come out and take a look at my wheelchair for some minor adjustments. It might take a few weeks, but it will get done. The bigger thing is that I need the doctor here to write me a prescription for a new chair, and then Gammie can start working on that. Insurance will pay for a new chair every five years, and I have had mine for seven.
Dr. R showed up alone. She had a lot of workers at her house, and all her cats were especially freaked out this morning, so she did not add to Freddie’s stress by trying to wrangle him into the carrier. Next week.
Friday, March 27th
I was tired today, and I plan to go right to bed and get some sleep tonight. Mom visited at lunchtime, and after that, we watched two episodes of The Pitt. Mom left shortly after that, and I watched other stuff until it was time for dinner.
Saturday, March 28th
As usual, when I relax and go right to sleep after I get my melatonin, it works, and I slept very soundly until 5:20 AM, when I woke up. Since I had gotten over seven hours of solid sleep, I didn't try to go back to sleep but started listening to my usual morning news podcasts. Today was the big No Kings rally, so no visit from my sister or mom today.
My noise-canceling headphones that I wear at night, I kept wearing until breakfast, and I did not notice that my neighbor was going through a very bad time and got taken to the hospital by ambulance. I only noticed later in the day that it was very quiet. That's when they told me she was not there. Yikes!
Sunday, March 29th
My regular CNA was not here, so J gave me a thorough but slow shower. Slow equals cold, but I would rather be cold for a while than not get a shower at all, so I am not complaining. As I was being put back in bed, I noticed that my neighbor's area was completely cleared out. This is a sign that the person is gone, whether because they passed away or left the facility.
This made me very concerned. I had her daughter‘s phone number, although I had not communicated with her for two years, but I composed a text that apologized for my past transgressions and sincerely hoped that my neighbor was OK. She texted me right back and said that she would be returning eventually after she had recovered from the illness that sent her to the hospital in the first place. I was glad to reestablish communication with her.
My sister visited at lunch and brought a package of sushi. I knew I would ask Mom to bring food tomorrow, so one package was enough. She also helped me submit my latest essay to the newspaper here and to Civil Beat, a local political affairs news organization. I will be interested to see if either publishes it.
My sister also got the lovely task of cleaning up a disgusting amount of roach poop that was around my area. Turns out, my Wi-Fi generator that sits on the side table next to my bed, like all electronics, was a warm place for them to hide and had gotten infested with roaches. A friend of mine had brought back a box of saltwater taffy, and it had been four days before I put the taffy in a gallon Ziploc bag. Before then, all the roaches had clearly identified my area as a food source. My mom would bring the roach repellent, and hopefully that would get rid of them for good.
My cover photo this week is my mom and sister at the No Kings rally. Both of them have been to all the rallies, and they get bigger every time. I hope that is the same all over the country. I don't see why it wouldn’t, as the authoritarian threat gets louder every week. The midterm elections will be a major crossroads. Hopefully, the Save Act gets defeated. Enough politics! Have a great week!
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