A normal day for me.
Starts at 7:30am. That is when I wake up most days. I then go across the hall and look at the emails that came in over night. Then I go downstairs.
I prepare a syringe with water to accept one pill of Theramycin. It takes about an hour to dissolve, so put that to the side and wait.
I prepare a second syringe of Riluzole. That medication dissolves much quicker. So I set that on the coffee table in the living room then get the papers out of the front yard.
When I come back in, I get a large syringe and a bottle of pedialyte. I put the syringe of Riluzole in my stomach tube then follow that up with about 4 large syringes of the 33oz pedialyte.
After an hour goes by while I am reading the NYT, I then grab the syringe of Thermycin and put that in. Then I follow that up with three containers of Jevity.
Here is the manufacturer's description of the product.
JEVITY 1.0 CAL is fiber-fo+ rtified therapeutic nutrition that provides complete, balanced nutrition for long- or short-term tube feeding. For tube feeding. For supplemental or sole-source nutrition. May be used for oral feeding of patients with altered taste perception. Use under medical supervision.
5. Then ten days a month I hook my IV pole and hang the two bags of Radicava I have to infuse through my port. I have to hang the bags, then puncture one bag with the dripline that comes with it. I then flush out the port with Saline and then connect the port to the drip line that is in the first bag. Then I dial the meter on the line to 200 and wait for about an hour for the two bags to drip all the medicine into my veins. When I am done with all this it is usually noon or one in the afternoon.
And then the day can get started! I take a shower come downstairs and finish reading the papers. Then I go upstairs and read through half a dozen websites I look at everyday. Like the Milwaukee Journal Sentinel and the Washington post. I am a digital only subscriber to those two papers. I get the print copies of NYT and WSJ delivered to my home and they both take about 3 hours of reading time. So I am usually not upstairs on the PC until 3 or 4pm in the afternoon. Then I go back downstairs and read a book for about three hours. Then I watch TV or go upstairs and play a game on my computer. I will usually end up there for good around 9pm and watch an episode or two of the The Wire as I can only access HBO MAX on the computer. Then around 10pm I lay down in bed and read a book some more than turn out the light about 11:30pm. And then start the whole thing over again the next day.
Exciting isn't it? The only pain I suffer during the day is something I came to realize only after watching TV for 50+ years. About 50% of the commercials are about food. And dammit, I always forget for a second or two I can't eat anything anymore. And that bums me out when I remember that one fact.