Thursday, April 09, 2020

Kidney Saga part 64

Yesterday was NOT great.

Oh, it wasn't horrible. But I was mentally in a bad place most of the day. Physically, the back pain was minor, but I was very thirsty all day. An annoying side-effect of the liquid restriction.

I got a filter for my shower (and a new showerhead, ah!) and I've noticed the difference already. The filter doesn't soften the hard water, but it does remove some of the harder elements. Showering is still difficult, but the water feels much nicer. I was able to install the filter and showerhead myself, which was amazingly delightful for me, as getting to do something for myself makes me feel stronger and healthier. Installing a showerhead is one of the easiest bathroom tasks around, but it's more than nothing.

Another task I tried to do was replace the air filter on my air purifier. I'd bought the filter in February, but only opened it yesterday. It didn't fit. The company had accidentally cut it to the wrong size. I took a few photos, contacted them, and within an hour got an apology and a promise of a replacement in the right size. If you need a custom filter, I recommend FilterBuy. My air purifier is an odd size, and they are the only place that was willing to get me something that worked with it.

I tried to count my hospital bruises that still remain, but I'm not sure I found them all. I have at least three on my arms and a couple on my chest/stomach. They heal very very slowly and are rather striking in appearance. I also have two new bruises on the back of each hand from the infusion. I've mostly been spared the pain from all the bruises, but it's sometimes strange to look at myself and feel like I've been beaten up. Another jarring thing about my current appearance is the "moon face" from the steroids. It makes me look, from the neck up, like I'm a really fat Campbell's Soup Kid, but my arms and legs are about as skinny as they've ever been, thanks to the constant draining action of the pills I'm on. So I look at my face and think "I'm fat," then look down and think, "Well, no."

Still recipe hunting. My diet is severely restricted, though. Once I'm able to see a dietician regularly I will have a better idea of what I'm able to eat outside the standard limits (no potassium, phosphorus, sodium or sugar!), but that isn't happening right now with the virus at large. I also need a couple of tests that aren't urgent and therefore have been put off thanks to the virus, but also would inform what kinds of foods I should be eating. It's annoying, but not life-threatening. Yet. Still, I have spent an inordinate amount of time looking at recipes the last few days and checking what resources I have at home to use to make them.

I can't/won't eat artificial sweeteners. Most of them do not taste at all sweet to me (including, sadly, Stevia). This makes it hard for me to be diabetic, as too many recipes call for replacing sugar with splenda or something else that tastes to me like motor oil smells. So I'm having to adjust my taste buds to not having sweet foods except fruit and very special small portions. Again, the lack of access to a dietician makes this even more difficult as I'm not entirely sure what I need to be looking for on food labels to avoid excess sugar (although I'm told it's the carbs listing - I just don't know what levels are "good" or "bad" yet for me).

And so life goes on. I'm almost happy to have the kidney disease to distract me from the wider world at the moment, despite the frustrations and difficulties.

Full Kidney Saga --- Start Here --- Kidney Wish List --- GoFundMe