“The Big Heat” - 11/4-10/24

Monday, November 4th

I was exhausted all day today because I was up most of last night. I forgot to mention my disastrous evening in last week’s blog. Somehow, there was a big staffing shortage on Sunday and my daytime CNA became my evening CNA. After she gave me dinner, she helped me brush my teeth and then said she had to go do rounds. I don't know if she had ever put me to bed before, but a whole routine is involved.

I made the fatal assumption that someone would come to replace her and put me to bed. Obviously, my brain decided to go on vacation for a little bit. So I just watched three more hours of TV and then looked at the time to see it was 11:20 PM! The evening shift ends at 11 so no one came! If I had been just a little bit conscious, I would have asked her when the person would come to put me to bed, and I would've realized that it was her.

Anyway, when I pressed my call button at 11:20 p.m., the CNA who came must have realized what a shitshow she had been given by the overworked and overwhelmed CNA she was relieving, and when I asked to be changed, she laid into me. “Why didn't you have your evening person change you? You're getting a suppository in the morning; I'll change you then.” I wondered, "You mean seven hours from now?" That’s longer than I want to wait.

By the time her partner came and offered to change me, it was a couple of hours later and I had asked her to cover me with some blankets, so I wanted to stay bundled up and try to sleep. I was so wired up now I couldn't get to sleep and just lay quietly while the next few hours crawled by. When she did come back at 6 AM, I had her wipe me good before I got the suppository. I spent the entire day in an exhausted fog. We watched a movie that was part of Criterion Collection’s Noirvember. I saw about half of it.

Tuesday, November 5th

The best part about staying up 24 hours is you sleep really well the next night. And I did. Like an absolute rock. I didn't remember until the end of the day that my masseuse was coming on Thursday this week. I had not finished my blog by Sunday night, and Monday was a wash, so I wrote the week's posts this morning. Luckily, I had a picture and got everything posted before the end of the day. I really need to start writing things earlier in the week.

I had successfully avoided thinking about the election all day. I had been living under the hazy illusion that America would do right by democracy and elect her first female president. My sister texted me around 9 PM with the news that the other guy won. F***.

Wednesday, November 6th

I purposefully do not want to impose my political views on this website, but I cannot let these election results go by without commenting. I think he is a very good con man and the people who thought he would take care of them are going to be sorely disappointed when all his policies benefit the very rich. He said whatever he needed to say to get people's votes, and now he will do whatever the f he or his ‘friends’ want. That is my general prediction. Don't get pregnant if you don't want to be.

Thursday, November 7th

I went out to a drug company-sponsored dinner at The Old Spaghetti Factory. I was eager to go and meet people with MS on Oʻahu. I personally met five people with MS, one of whom works closely with the MS Society and wants to start a self-help group in Honolulu. Perfect! He gathered everyone’s contact info and I made sure to tell everyone about the website!

It was very interesting for me to notice how willing I was to be admittedly doing the worst out of everyone there. I only saw one other person in a wheelchair and that one was manual. My disabilities are very obvious and very advanced. I do not mind being the person you look at and say, ’I'm glad I'm not them.' If I can do it with a genuine smile on my face, being as bad as I am doesn't look so scary. Who am I kidding? I want to be an inspiration! Mission accomplished today.

Friday, November 8th

I was glad to be in bed today after being up yesterday and knowing I will be up tomorrow. I can make a strong case that if I want to avoid pressure sores, the best place for me is in bed. I have a low air loss mattress and have had one for the last three years. My skin is doing great. Before that, when I lived in Pukalani, we did nothing but take care of my skin as I lay on the mattress, that is the next best thing before the low air loss mattress. It was not very good, but I didn't realize what I needed. So I am set. My wheelchair has a very nice cushion, but it is still static, so if I don't move around in the chair, I will be prone to pressure sores there. Anyway, I like just lying in bed.

Saturday, November 9th

I got up and got a taxi to Mom's. My sister arrived 10 minutes later and met the pizzas that she had delivered there. Excellent! I loved finding a place that made pizza that I could eat! Pieology seems to be the hot pizza place now. We got three pizzas, each with a different crust. Regular, cauliflower crust, and gluten-free. They all tasted the same to me! I was hoping the regular crust would not be so flat, but no…

We tried to do an ear coning, but we didn't get my positioning correct and simply burned the cone. I need to find someone who can come to Mom's place and do it to me correctly. I also have boxes of my stuff from Maui in Mom's storage lockers. I went through all my stuff when I moved and got my 400-square-foot ʻohana down to a dozen boxes. She wants me to go through those boxes and get through the fat there. OK, but there's not much fat. She brought up a box of photo albums. Can't get rid of that! What's your argument? These photos are old! Throw them out and get some brand-new photos! We could digitize them but there's something fun about going through the actual albums.

We did get rid of a few things and found two small framed pictures that I can put up on my wall! One is a line drawing of a cat on his back, and one is my personally autographed photo of Stephen Colbert from his time doing The Colbert Report. My sister had a connection and was able to get me a signed photo for my birthday about 12 years ago. I had just the reaction she wanted to see. I went crazy for it! It's great to have something from the ’before’ times on my wall. I think they are definitely going to have to repaint this wall when I leave.

It was a great day and my aunt stopped by as well. We had birthday pie, which my sister was fine with. We need to find a good gluten-free bakery so Mom can have a place to get gluten-free cakes for my sister and I. Her best friend has celiac disease! Let's figure this out.

Sunday, November 10th

I spent today writing most of this week. That, and playing Wordscapes and the New York Times Games app. My favorite is Wordle, of course, quickly followed by Connections, Spelling Bee, and Strands. Anything but the crossword. I've never been into that. My iPad Pro was at 54% last night so I turned the display way down and it lasted 24 hours just fine. So that's where all your battery power goes. Good to know.

The cover photo is of my sister and me at The Old Spaghetti Factory. I had taken a nice picture with the drug rep who I knew from Maui, but family won out. Sorry!