Monday was a perfect day. Karen came in and fed the hungry little guy, fed me, then got me dressed and up in my chair. All morning while I'm getting dressed, I look outside and see that it's beautiful like this, and I try to plan our cruise for the day, sometimes it works out the way I plan, and other times it takes a turn, and I never know where I will end up. When I left, my plan was to cruise down to the end of the boardwalk, then to the end of the wharf, then down Westcliff, but when I got to Depot Park, I decided to just go up the hill and take some pictures on the bridge of the beach and then head on down Westcliff Drive until it's time to turn around. I always have the same favorite places that I like to stop and take pictures; while taking pictures, I say to myself that next time I'm going to go to a different route and take photos of something else, and maybe someday I will actually do that. I always try to remember how gorgeous these places were the last time I came down to take a picture, but it seems more beautiful every time I come by. Of course, I have to stop at my cousin's memorial and take a couple of pictures, and a couple of videos, the waves behind her are always so gorgeous. It seems like no matter what time I go, it's always really dark right there; I need to ask my brother how to fix that… I'm sure it's just a simple flick of something? One of my favorite things on Westcliff to take pictures of, besides the waves, or trees and benches followed closely by all the birds and dogs on the beaches. People always leave cute little memorials to friends they have lost; I also like taking pictures of those. I also see a lot of adorable little art projects that people made and left behind; I never know what I will find… I love it! There's one place almost all the way to the end of Westcliff Drive where there is just one big beautiful tree on edge with a memorial bench in front of a cliff in front of the ocean that I love to stop and take pictures, one time I ran into a friend named Tammy who is a cousin of my friend in high school. At the end of the day, she messaged me and said how nice it was to see me, and she showed me a picture of the tree and the bench and said that that was her favorite place to go to read. I wonder how many people love that picture as much as I do? Probably thousands… I always turn around and cruise back, thinking I haven't been out here for very long but then looking at my clock and having to rush home either because it's time for my caregiver to come in or because my battery on my chair is dying.
I cruised home and tilted back for a while until Rachel came in; she fed the wild one, put me to bed, got me something to eat, cleaned up and wiped everything down, and then went home. Looking back on how I described it, that seems really fast but usually takes about 4 to 6 hours. Then my caregiver goes home, and I have my whole room to myself; I can do whatever I want. Even when my caregivers come in, morning and evening, I figure out what they like to watch, and I always have whatever they like. I usually listen to music, catch up on my blog, watch my TiVo shows… Mostly the ones I don't care about when people are around. My cousin posted pictures of her daughter, son, and the foreign exchange student they had lived with for a while… I can't believe how grown up and beautiful/handsome they have become. I keep looking at myself and thinking how much older I look, and then I look at my nieces and nephews who used to sit on my lap, and they're growing up so much. I watched TV until I fell asleep.
Tuesday wasn't such a good day. Cindy came in and fed the hungry hound, got me dressed and up in my chair, and drove me over to Dominican Hospital to get my very first PICC line for antibiotic infusions; apparently, the UTI that I have is so bad that it can't be cured with pills, so I'm on my way to the hospital… They have threatened me with this a couple of other times but then decided not to; hopefully, this works! As soon as the doctor came into the room, I could see his mind working… "How my going to get this lady up on the short bed to insert the PICC line?" He introduced himself and then left the room; he came back a couple minutes later and said that he had to consult one of his other colleagues because they've never experienced putting a PICC line in a quadriplegic. He wanted to make sure there weren't any special instructions. The funny thing is he could have asked I or Cindy, and we could've given him a pretty good answer, but then he doesn't know us. She brought me back home and left; I just hung around and watched TV until Rachel came in. She carefully put me to bed after she fed the hungry hound. And by the time she set me up in front of the computer for the night, I just wanted some cannabis gummies and quiet. I woke up briefly and checked my mail because I thought I saw an email earlier from one of the physical therapists from Dominican; the last time Roger and I tried to start a support group, she helped us get it going. Sure enough, she sent me an email, so I read it, and then I was too excited to sleep; she wanted to start another support group on the east cliff side of town and wanted to know if I would like to be involved, and I said heck yeah! They've been talking about starting one on River Street at the rehab hospital I went to, so maybe they will begin to two. I'm going to keep my fingers crossed and hope it works out this time; I think since the pandemic, people are going crazy to get out of the house and do something… I went back to sleep.
Thursday was an okay day. Karen came in and fed the hungry hound, fed me, and got me dressed and up in my chair. This is the first day I have to go to the cancer center and get my first antibiotic infusion through my PICC line; my aunt said she would drive me, and I'm so glad I don't have to find a way to get over there. After it was over, she brought me back home to deal with the drama here; they were supposed to deliver a new refrigerator for the kitchen. I was going to move the old refrigerator out into the garage, but when they got here, they said they couldn't put the new refrigerator in the kitchen because the ice feature was connected and frozen over… I don't even have a nice feature on my freezer. They did leave a number and said to call back when we get the inside freezer fixed, and they will install the refrigerator; Omar came by and said it wasn't frozen, so now I have to call them to come back. Andrea, the organizer, came in, and we worked on the kitchen; I didn't realize I had as many appliances as I had… I even had an ice cream maker, and I had just bought a new one. We did part of the living room because we wanted to move on to the bedroom next, but all the boxes were decorating for Christmas. While I was working with the organizer Karen, a nurse from Dominican rehab that helped us with our support groups, called an answer she could borrow my van to take Rogers wheelchair over to the hospital; he wasn't feeling well and had to go to the hospital in an ambulance and is not good to leave your wheelchair lying around. She came by and got the keys, and luckily they were going to let him go home, so they took him home; whenever you don't feel good, you just want to go home. Another Karen, they all work together, brought the keys back, and drop them off. I'm so glad that Rogers is okay! Rachel came in, and I noticed throughout the night she looked a little annoyed, and she said, "why don't I have a garage sale and sell all the stuff she's taking away" I said, "because I really don't want strangers to come to my house." She said that she would be glad to take it and sell it somewhere, so I told her next time, I would leave the stuff and go through it before the organizer took it away. I just wanted it gone! Rachel fed the crazy pup, put me to bed, and then fed me. She did some light housekeeping and then went home; it always feels good to get back into bed after a long day of purging… I feel like I purchased my mind as well as my house. I watched TV for a while and fell asleep.
Friday was a pretty good day. Karen came in and fed the hungry little Dude, provided me, then we did some personal care and a nice long hot relaxing bath. I didn't get to enjoy it as long as I wanted because the visiting nurse was coming in to do my first at-home infusion; we got done just in time. The nurse's name is Lily, and she just lives right around the corner; it seems like a lot of the nurses and therapists I meet lived right around here. She walked Karen through looking up the little ball of antibiotics and then showed her how to take it off when it's done, and then she left; I was a little nervous about her going, but she wasn't, so I figured she knew what she was doing and of course after was done Karen did a great job and remembered everything! I decided to stay in bed, so Karen cleaned up and then home. I watched a movie, listened to some music, edited pictures, and got a little caught up on my blog before Rachel came in. She fed the hungry little guy and then took him out for a nice long cruise; I was thrilled she did because I didn't know what to have her do for four hours. She got me something to eat, cleaned up, and then home when she came back. I watched another movie and then some TiVoed programs before I fell asleep.
Saturday was a nice relaxing day. Cindy came in and fed the hungry beast, fed me, and then we had to wait for the nurse to come to give me my infusion. She said it up and then left and instructed Cindy how to take it off. They bring these tiny round bulbs to keep in the refrigerator, and I was joking about them looking like Christmas tree decorations and putting one on the tree. Is that weird? It was freezing and rainy outside, so I decided to stay in bed; I couldn't wait until summer! I have a lot of New Year's resolutions this year, and of course, one of them is to try to follow my resolutions; I'm starting to realize that I'm getting older, and I need to get myself in shape and eat better. My cousin sent me some pictures of his view up on the hill as he's drinking coffee; it's so gorgeous! He has his brother's memorial bench facing the Valley; you can see the mountains and the fog… He has some bird feeders and a birdbath. The birds just really have a good time. It seems like the best way in the world to wake up! My nephew and niece posted some more pictures of the baby, so of course, I had to lift them off the Internet; the baby is so adorable, and they are so happy! Rachel came in and fed the hungry hound dog and then took him for a nice long walk; it makes me feel a lot better when I stay in bed if I know that at least, Dude, and get some exercise. She returned and got me something to eat, cleaned up, and then home. The rest of the evening, I just watched Christmas movies, listened to music, and just tried to get myself in the Christmas spirit. I watched my TiVo programs until I fell asleep.
Sunday was another relaxing day. Cindy came in and fed Dude, fed me, and then we waited for the nurse to come for another infusion; I'm so glad I only have to do this for a week, and I'm kind of hoping that it will really make me feel better, but I have a feeling that I'm just getting old and this is how it's going to feel. I hear about so many people passing away, and it really makes me nervous, and I want to take better care of myself; I used to think I was invincible, but I don't believe that at all anymore. After the nurse left Cindy, put me back up to my computer, and I still had about an hour before Karen came in. Cindy cleaned up and then decorated the living room a little bit before leaving. Karen came in, and we did some personal care and a nice long hot bath, then back to bed for a lovely relaxing evening of watching TV. Cindy sent me some pictures of her house when she finished decorating; it looks fantastic and festive! Now I'm getting in the Christmas spirit a little bit! She is so creative and always finds the cutest stuff! I watched TV for a while and then fell asleep.
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