Monday, November 16, 2020

Kidney Saga part 125

I meant to write sooner, but things kept happening in real life.

Let's see... late October my wonderful sister bought me a Christmas/Birthday present: a new lift chair! It's a recliner, although it doesn't go fully flat. Inkwell the cat has found that he can rest on my lower legs while I'm playing on my computer, and likes to stretch out and sleep on me when I'm napping in the chair. Getting up has become much easier. I no longer feel the agony in my knees as I stand after a long writing/gaming session. This has made it easier in general to move around, which has made my life in general better.

The hospital system updated its policy on lab test results. Instead of waiting for a doctor to screen the results, they are immediately released to the electronic chart, accessible via a website. So when I got labs done at 11am, the results were already up by 1pm that same afternoon. Reading through them without a doctor's advice is a bit sketchy, but I knew enough of which items to look out for, so I was able to tell before my doctor appointment that I was still heading in the right direction. Some of the numbers that used to be way out of whack are now almost normal or within normal range. Don't get me wrong, my estimated GFR still puts me in Stage 3 kidney disease, but even that has improved dramatically since the beginning of this year.

A week after the tests, I saw my kidney doctor via Zoom. He confirmed my analysis, telling me I was definitely showing improvement. Except for the pain in my joints, I'm doing very well. Unfortunately, the pain in my joints is a classic lupus symptom. So he added a new medication that has been shown in clinical trials to have a good effect on people who took the treatment route I did - including the cytoxin chemo therapy. It's still too soon to see if it's having the desired effect, but I can say the medicine makes me miserable for about an hour or so after I've taken it. Not pain, just discomfort and stomach ache.

I've continued to manage a few minutes on the exercise bike most days. I have missed a few days due to pain or other things happening (when I installed my new light switch, it took enough out of me that I didn't try to exercise). I still have hope that I can get up to 30 minutes a day at least five days a week by the end of 2020, although I'm not going to push it when it comes down to it. I only do as much as I can tolerate without real pain.

In my tech world, some big things happened that helped to delay me writing this. My storage hard drive on my computer died. As I was only running my operating system and a single game from the boot drive, this meant that I lost EVERYTHING else. Fortunately, I had a back-up. Unfortunately, it was four months old. D'oh! So I lost four months of photos, writing, and other projects. Which is painful, but not so horrible that I feel like I need to go to a data retrieval company to try to recover the stuff on the drive. Instead, I purchased a new drive, installed it, restored the back-up to it, and am getting on with life as best I can. I now have a nightly back-up to an external drive *and* a cloud back-up going. I hope to not lose everything again.

In addition to the lift chair, I installed a nice "smart switch" for my room. The light levels in my room change frequently during the day depending on the location of the sun and whether or not we have weather outside. It's not a big thing to get up and turn the light on or off, but I often have severe feline paralysis when I want to change the light. Also, I have to wait for the lift chair to push me up. So a smart switch, which allows me to turn the light on or off from my phone, seemed like an interesting project. And so it was. I've done a little bit of DIY wiring before, and this was not a difficult thing to install. The worst part about it is that my hands, wrists and arms are still very weak - even pushing the wiring back into the box was harder than it should have been. I managed it anyway, which made me extremely happy on multiple levels. Being able to accomplish a small home improvement task is amazingly gratifying.

Installing the smart switch led to me installing some more apps on my cell phone, including figuring out how to install a new launcher on Android. I wanted to customize the icon for my light switch, and that's easiest with a launcher. Which is something I hadn't explored yet. But it will probably keep me fascinated for a bit, as it has a lot of options that techie-Laura loves. Ah, more toys to fool around with!

For once I'm also looking forward to my birthday, January 20th. Inauguration Day. Twice in my life, my birthday has been devastating. Hopefully this next one will be as wonderful as the one in 2009, which has probably been the best inauguration day b-day I've had. We just have to get through the two months leading up to it. Fingers crossed it won't be too bad.

No promises on my next update, but I'll try to keep updating regularly here as well as on Facebook.