I belong to several support groups on Facebook….but I basically hate the way most people use it. I don’t read much about people who are my “friends”. I have most of them hidden 😛 I do like several news sources and a few popular FB’ers like George Takei. Mostly I want to keep in touch with my daughter and read and write stuff on support groups. I have FB set up so I get emails telling me about support group conversations. Today I got almost no emails.
For a few months now, I’ve been getting way fewer emails from FB. When I go to the support group’s main page, I can see that I was never notified of quite a few conversations. I often wonder why. FB keeps track of everything about us. They probably know that I have never, ever seen an ad on their site…and then bought something. I tune out ads on TV, radio, the computer, etc. It’s kind of amusing how I can hear an ad without paying attention, and after hearing it dozens of times, I look up at the TV and actually see it one day. I had no idea what they were blathering about. I am not a very good consumer. I wonder if FB snubs me because I am doing nothing to support them? Is it one of their new algorithms?
I have an ad blocker installed on my chromebook. I have no money to buy things, so I sure as heck don’t want advertising. I spend most of my day online reading interesting things. I wish I knew more interesting people! I miss having real conversations. Most people on FB are doing well to put 2 sentences together. I long for the days when I could spend hours talking about things that really matter…with people who had a varied background and understood math, science, social justice, food policy, vocabulary, art, travel, world news, kids, and a whole lot more.
I think the saddest thing for me is to not be part of a larger picture. I was a lot happier with Heather and the grandsons here. My life-long communities of homesteaders, organic farmers, unschoolers, etc are no longer in my life. I don’t know of any support groups of people in hospice or for those of us slowly fading away…while losing brain power, sight, mobility, health and all that. It would probably be a depressing group, though.
On the noon news was a segment about Angel Trees around town. They say it’s for both kids and seniors. I realized that there is nothing I want here except food, clean laundry and Olive to be happy. Olive is all set, the senior missionaries do my laundry every other week and what about food? What if I could get whatever my heart desired? I don’t even know any more. I was loving Costco flan for breakfast, but now they are selling creme brulé instead. Too rich for breakfast. Most everything hurts my guts. I can only stand for a minute or two at a time to prepare food before my breathing cuts off. I’m ready for my Jetson’s Foodarackacycle. I want what I am hungry for to magically appear the instant I am hungry 🙂 I especially miss people I want to be with.
I was very fortunate that we had a long, mild fall….and was on enough steroids to make it enjoyable. I found many excuses to go out and about by purchasing one or two kinds of food at a time. That way I always had a destination. Food is a big group 🙂 I could go Asian or Mexican or to Smith’s or Costco….or just about anywhere. And while going to and from, I had plenty of time to take pictures or veer off and go to a park.
Snow and cold weather change everything. It’s not so comfortable to wander around outdoors. My nemesis is uncleared sidewalks. With my hernia this huge and delicate, I am not going to be able to get out of the chair to get me unstuck from piled up snow, slide-outs on the ice and other winter obstacles. My old chair has totally bald tires. My new chair is difficult to maneuver and keeps showing itself to be unreliable. It’s a lot bigger deal to be stranded on a side street in the bitter cold.
It’s funny that I wrote that and went to my doc appointment. I wore just the windbreaker part of my purple coat….and was too hot. On the way home, I had my coat off, short sleeve blouse, skirt and sandals on 🙂 Lot of startled looks. Temperature was in the mid 30’s. I took a few pics of the mountains and sky.
After not going anywhere for days, I was surprised about just how weak I was. I was so SOB that I had to sit in the hallway for a few minutes after putting on my coat and maneuvering through the door. I was gasping for air. It’s not even a whole block to the doc. I was a wreck when I got there. Very broken voice, wicked SOB, droopy eyes and face, slumping to one side and apparently my eyes were doing all their weird fluttering, jiggling and changing size.
This guy is a fantastic doc. I feel bad that he has to deal with me dying. He is upping my steroids from 32 to 48 mg of Medrol. That’s the equivalent of 60 mg of prednisone. I didn’t even have to ask for more. It’s as if he reads my mind. I told him the potassium is making me sick and I wanted to stop it. He said OK 🙂 I’m thinking food will feel better without it! The doc is referring me to yet another hospice company. I told him about the internist wanting to do a pacemaker…but that I will refuse it. I explained how my diaphragm gets paralyzed or quivers. He says it’s spasming. I felt bad that my dying shakes him up. I told him I know he wants to fix people. It was hard for him to come out and say he knew nothing could be done for me. Then he fled the room. He stayed gone a long time….blamed it on the printer or something. Actually, it makes me feel better to know he is human. It’s nice that someone cares if I live or die.
I’m glad to see the smoker’s window wide open!
My heart has been beating all wrong this afternoon. It’s making me numb on the left side, including my face and neck. I am looking forward to more steroids and no potassium! I hope this doc’s third hospice referral is the charm. If not, there’s always that company the last dead person here used….the company that the pastor emailed from. I really want someone to help me with the last wishes paperwork!!!