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  • Writer's pictureRuss Newton

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.

  1. 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.

  2. 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.

  3. 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.

  4. 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.

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Kathy Roland
Kathy Roland
Oct 19, 2021

I feel your pain about the food commercials! I can eat some soft foods now but the commercials are always for food that I am unable to swallow but would love to have.

Kathy Roland
Kathy Roland
Oct 19, 2021
Replying to

I am going to have a series of attempts to stretch a tight spot (using a balloon) that is preventing me from eating anything that is not really soft. The first is next Tuesday. If this method doesn’t work they will resection my stomach to remove the tight spot. They did say I would never be able to eat like I did in the past. I can’t imagine how things are for you without the hope of eating.

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