Sunday, November 29, 2020

Kidney Saga part 126

I really am a lucky person.

I mean, when I basically collapsed with kidney and heart failure in January and then nearly died in March from a diabetic coma, you probably wouldn't think of me as lucky. But I didn't die. I didn't even have a lot of pain, compared to other people. And falling so ill just *before* a global pandemic hit was also lucky, in a sense. No one actually expects me to leave my house and be sociable during a pandemic.

I'm also extremely lucky to have Eric, who is amazing and has managed to hold up well, despite unreal pressure being put on him as a caregiver. I'm stubborn and sometimes extremely annoying to get along with, but he's managed to keep me alive and well-fed and taking my medicine all along. I also have a fuzzy lap-warmer named Inkwell who has purred me to sleep more than once.

And I have an extended support network, including family and on-line friends. I haven't felt the sting of being alone because I can "talk" to other folks on the internet, via Twitch and Twitter and Facebook. Just watching Twitch and chatting with folks has given me all the social activity I felt I needed. Thank goodness for the internet! I even got to see most of my family on Thanksgiving via Discord and Zoom.

So... an update on my health. I had another virtual visit with my kidney doctor last week, and he confirmed the results of my last blood test: I'm in stage 2 kidney disease now, a very good improvement from stage 3. This means the threat/danger of dialysis is basically gone as long as I'm careful, but I still have damage so I need to stay the course and continue to eat low-sodium, low-potassium and low-phosphate foods. It may be upwards of a year before my body can handle normal levels of sodium again, if ever. Processed food is still too dangerous for me to have regularly, although I'm allowed a little wiggle room now.

The new medication will take at least 12 weeks from my starting it to show improvement, according to the studies I read after my doctor prescribed it. I've been taking it about three weeks now. Lupus is an autoimmune disease, which means that my immune system is attacking my organs and my joints. The really simplistic explanation of my treatment goes like this: we're turning off my immune system to try to reboot it. The first attempt didn't work, but the second attempt with Cytoxin did. That resulted in my kidneys getting better. Now we have to convince my immune system to stop attacking my joints. The new medication is used for people who had transplants to prevent rejection, as well as for severe arthritis, like mine. In about 12 weeks it should shut down my immune system again, and we'll see at that point whether or not my joint pain goes away. If it does, then the doctors will decide how long to keep my immune system suppressed before letting it come back and seeing if it's been properly rebooted. The doctor said it could be a year or two before I can stop the medication.

The on/off method even works for the human body, apparently.

The biggest problem with the new medicine is that I'm supposed to take it after meals - about 30 minutes after meals. Which means there is an even chance I'll forget to take it. And so it was - I *think* I forgot to take it one night. However, I wasn't certain I had really forgotten and that I hadn't just forgotten that I'd taken it. The confusion and uncertainty was distressing. So I turned to my cell phone, which is always with me, for help.

A search for a simple medication reminder app resulted in a lot of options, and after viewing a number of them, I finally settled on one called MyTherapy Pill Reminder & Medication Tracker. It has ways to track blood pressure, blood sugar, weight, and exercise along with a basic pill reminder that even includes a pill inventory so you can get a reminder when you need to refill a prescription. The default weight unit was in kg, and I had to write to support to figure out how to change it to lbs (it wasn't hard, just not obvious). I've only been using it for a week or so, but I am finding it very useful already.

For example, I have been recording my exercise daily, and it even provides me with a chart to show my progress.

My tech world has been very busy of late. In addition to my new reminder app, I also got some smart plugs for various lights around the house. I also plugged my room heater into one so I can turn it on and off remotely. Very nice! My feline paralysis makes it difficult to turn things on and off manually. The plugs have timers, so I replaced the mechanical timers on two of our lights with the smart plugs, and now I have them on a schedule AND can turn them on and off from my phone. I am even able to signal Eric (when he's downstairs) that I need his help by blinking one of the lights - which saves me from shouting across the house - although that's not something I want or intend to make a habit of doing.

My poor computer is running smoothly again, although I've still had no luck recovering my four months of lost data from the old drive. I have the old drive in an enclosure now, and keep hoping it might just decide to work one day. Sometimes computer stuff does that just to annoy people. I've managed to get it to show up a couple of times, but the recovery software "loses" it almost immediately, and the drive vanishes again. I am continuing a nightly local backup of my new drive and working on a cloud backup, although my data upload rate is so slow it'll be a couple of months before everything is fully backed up to the cloud. Once it is backed up, however, nightly backups should be fairly quick and easy.

The after-Thanksgiving sales allowed me to upgrade my memory on my computer from 8GB to 32GB, which has improved my gaming experience quite a bit. I also indulged in the Autumn Steam Sale and got Fallout 4 with all the DLCs. It was only about $20, and I suspect I will have a great time with the game despite its many faults. And vaults. I've already started playing it. I started out with a God Mode mod - and still somehow nearly managed to die. This one will take me a while to learn. The variety of mods available makes the game much larger than its base game, so I'm hoping to get some fun out of it when I tire of killing pixels as a superhero in DC Universe Online. The Fallout franchise is the spiritual successor to Wasteland, which I played on the C64 as a teenager and loved. I didn't actually finish Wasteland until I played it on an emulator as an adult. I don't know if I'll finish the main storyline in Fallout 4, but I suspect I'll enjoy it regardless.

I've been listening to a lot of audiobooks lately, in addition to podcasts. So far I've mostly stuck with books I've already read. Listening to them is a different experience and I've been surprised to find that I react differently when I listen as opposed to reading. I suppose the emphasis is different due to the narrator. It feels like adding a new dimension to the books, and I've enjoyed the experience immensely.

I made a couple of purchases on Etsy recently. I got two more catnip eyeballs for Inkwell from Scarywhitegirl and more lavender shower bombs from Frakking Bombs. Along with my lavender shower bombs, she threw in extra shower bombs in new scents, and a rubber ducky.

And so, life is not bad. My hands hurt all the time, and my shoulders, elbows and knees hurt most of the time. I can't lift heavy things, and I have trouble opening containers of all types because of the weakness in my hands. I have to go slowly up and down the stairs to avoid falling. But I feel good despite the pain, or maybe with the exception of the pain. My mood is certainly fine - I haven't fallen into a bad depression in quite some time (knock wood). And my boys are keeping me content, one by cuddling on my legs and purring and the other by cuddling me, feeding me, and generally being my everything.

Life is pretty good despite it all.


Roger Owen Green said...

Congrats on your improving wellness