Week Ending 5/26

Busy week...

Fought with Comcast some more. Had an intake appointment with a new councilor (because, let's face it, I need someone to talk to). Had my now annual visit with my neurologist.

Comcast is still evil. So much so that when I mentioned it to both my councilor and my neurologist, I really didn't have explain further. Really, if you need any more proof that the "free market" is bullshit, you're not paying attention.

New councilor is... young. Why is everyone so young all of a sudden? Still, promising. We'll see how that goes.

Neurologist has basically succussed his way out of job. I haven't had a serious headache in ages and ages. Either my medication is working or Post-COVID syndrome is a cure of migraines. Either way, I'll take it.

Spent most the time in between these things in bed, resting. Pretty much the plan going forward.

Mom seems in good spirits. 

Onward.

Week Ending 5/19

Well, where to start... Oh, I know.

Comcast is evil.

The adrenaline that made is possible for me to spend five hours on the phone with Comcast one day and another hour the next day is also evil. 

The several days I'm spending in bed because of this is not fun.

Then we have the realization that I'm fighting with Comcast for my mother because I have an outside chance to getting Comcast to finch and I can't fight the cancer for her. That really sucks.

Meanwhile, I'm binge watching Body of Proof, the first two seasons of which were pretty good. The third, and final, season kinda sucks. When three out of four main characters aren't in the final season, it's a bad sign. 

Ah well.

Onward

Week Ending 5/12

Well, to start with - Happy Mother's Day

I love my mom. She's a great person and a great mother. In my life she's been my friend and my teacher. The person I turn to for advice, whether about parenthood, money or just good movies to watch. She and I have always shared a love of books and movies. 

So, Happy Mother's Day, mom and thanks for being there for me.

At this point, I need to mention this week's bad news. Back in December, mom had her cancer surgery. They said they caught the cancer, and it hadn't spread. It looks like they were wrong. After months of pain and being ignored, my mom finally got them to listen to her and they did more tests. She still has cancer.

Now, there's something you need to understand about my mom. Faced with a crisis, she just gets down to the business of dealing with it. She doesn't give up. (Hey, I had to get it from somewhere. :) ). So, we're not giving up. She's got an appointment coming up with the doctor coming up to discuss the next steps. We'll deal with it.

Good thoughts, positive energy, prayers and general good will are all welcomed.

I'm worried about her. More, I'm frustrated that my own illness prevents me from getting on the next plane home and standing next to her to glower at doctors and generally be supportive. Good thoughts, positive energy and prayers are about my limit. That, and being a there for her if only on the phone. So, I do what I can. We'll deal with it.

OK, now for the good news of the week. I mentioned last week that I got some blood work for Juno's insurance. The tests show that my annoying struggles with diabetes and dieting have been worthwhile. My numbers have gone back down, just across the line into the pre-diabetic range. So, I'll keep doing what I'm doing. You know, I actually like lettuce. 

So, some really bad and some really good. 

Good days and bad days. 

We deal with them. 

Onward

Week Ending 5/5

 Another quiet week. I'm not complaining.

Good days, bad days. 

My big things of the week are that I finished watching the last couple of seasons of Death in Paradise, which I enjoyed, and went out to get blood work done (a requirement for Juno's health insurance). 

So yeah, quiet week. I'll take it.

Onward

Week Ending 4/28

 What can I say about this week? Nothing really dramatic.

Had a hard time sleeping, leading to more than a couple of days where I didn't really get out be bed (not that I really get out of bed that much). 

Still, I managed to paint some minis, started working sorting out screenshots for my next Raven's Apprentice chapter and played a fun and challenging game of Age of Sigmar with D (my barbarian goat-men vs his new steampunk dwarves... a narrow win for my goats, because D was a good sportsman and gave me a chance to take out his airship). 

So, a pretty good week in the end. I would have like to have felt better for it, but I've got remind myself to take the wins where I can and not set my expectations so high. 

Still working on figure out the food thing.

Onward

Week Ending 4/21

 OK, we're going to talk about my health this week... and this is going to a long one.

So, I currently have two chronic conditions - Type-2 Diabetes and Long COVID (also called Post-COVID or Post Acute COVID Syndrome (PACS because we love our acronyms)).  The Long COVID came first. 

So, for clarity, what is Long COVID? 

Long COVID is a condition that develops in a significant minority of people who had the COVID virus. It's new, poorly understood and not really clearly defined by the medical community. The exact causes and mechanism aren't understood. Anecdotally, it is actually more common in people who had mild COVID symptoms or were completely asymptomatic. 

The symptoms of Long COVID include, but are not limited to, severe fatigue that grows worse after physical or mental activity and brain fog (difficulty concentrating, forming thoughts, remembering things). Other symptoms include respiratory problems, sleep problems, depression or anxiety, fever, digestive problems... yeah, it's not fun.

What does this mean for me?

Well, I talk about getting a limited number of active hours in a day. Basically, most days, I get about 2-4 hours of being able to sit up, concentrate and do something. Note, I said "sit up" not "stand up." Physical activity is exhausting. I can get around the house reasonably well, but walking out to the mailbox is a "well, I'm done now" kind of activity. I can talk with someone on the phone for about 30 minutes before I start to fade. Once I've used up my energy for the day, I'm pretty much done. From that point, it "lay down and watch stuff and forget about concentrating."

The one thing that I've found alleviates the fatigue is eating. I get about 30 minutes more energy out of a meal, probably 15-20 minutes for a snack. A little boost that lets me do a little more, feel a little more human during the day.

I can push beyond those energy limits, but I pay for it. I feel like I should mention that getting angry also gives me a "false" boost (adrenaline is a wonderful, terrible thing). I get a boost but I pay for it heavily. 

When is say "pay for it" ... I mean "lay in bed and don't do anything for a day or two or three." 

So that's my every day - get up, have breakfast, do something (hobby, game, whatever), fade out, have lunch, enjoy the little boost, lay down for the afternoon, have dinner, watch TV with my wife, go to bed. How much I can do depends on the day...a "good day" us 3-4 hours of doing stuff. A "bad day" is 0-3 hours. A great day might get me 5-6 hours up. In all cases those "up" hours still mostly consist of me reclining in bed and working on my computer, like I am now.

Got a picture? Cool. Now let's talk about Type-2 Diabetes.

Primary causes of Type-2 Diabetes lack of physical activity and weight gain. Notice the relationship? Let's spell it out - Long COVID prevent physical activity and encourages eating, which leads to Type-2 Diabetes.

The treatment for pre-Diabetes and early Type-2 Diabetes - exercise and eat less to lose weight. Also, changes in diet. 

See a problem. Long COVID means I can't exercise. Not "I don't want to." Not "it's inconvenient and I'm busy." I Physically Can't Do It. 

Next problem - one of the selfcare elements for Long COVID is getting those little boosts to energy to keep going and feel good during the day. That means eating food. Treatment for diabetes... eat less, no snacks.

I don't know how to explain how painful that is. I mean physically painful and mentally painful. I've spent days in the past few weeks too exhausted to do anything and so damn hungry I want to scream. 

The "little wins" that get me psychologically through the day aren't achievable because I'm too tired and hungry to do them. So, on top of exhaustion, hunger and brain fog, I get depression... both from the hungry and from the lack of those "little wins." 

Pile on the depression and anxiety that comes from the uncertainty and general life changing bullshit that is having not one but two chronic illnesses.

Now pile on the feeling that no one... not my family, not my friends, certainly not my doctor... seems to understand what I'm going through. Really, how could they?

Result... 

This blog post! Because guess what... I'm me. I don't give up. You don't get it? I'm going to explain it to you! You still don't get it? Be prepared to hear more about it! 

Also, I'm making minor adjustments to my diet to allow for small snacks (mostly nuts, or a hard-boiled egg) to give me those little boosts back. Will it work? Will it hurt? Heck as I know, but I there's a point where you have to balance Quality of Life against other concerns.

Well, if you stuck through all that good for you. You get a gold star.

I'm not giving up.

Onward

Week Ending 4/14

OK, the eclipse was AWESOME! 

We sat out on the side porch. Juno played music and occasionally wandered around handing out eclipse glasses to the neighbors. We watched the light slowly fade until... the stars came out, while the light still lingered on the horizon all around us. 

Amazing.

Also, I discovered that eclipses smell like rain, snow and the sea. I hadn't known that before.

The rest of the week wasn't great, but I choose not to care right now. 

The eclipse was Awesome.

Onward