Tuesday, January 19, 2021

Lupus Saga part 2: January 19, 2021

I am officially in complete remission from kidney disease.

My doctor gave me the good news in our virtual appointment last week, and I'm thrilled. It doesn't change everything, because I'm still suffering from lupus, but it does allow me to loosen up my diet restrictions slightly (I can reintroduce some forbidden foods as special treats!). I was cautioned not to go crazy, and I don't intend to, but it will be nice to have a piece of bacon again.

Now my biggest concern is the lupus, which continues to attack my joints. The rheumatologist noted swelling in some joints but said my lupus seems to be taking a fairly classical route, which means the usual treatments will hopefully help. Although a whole category of treatments is cut off due to my reactions to one of the medicines they tried during my kidney failure. Still, she said they would start to work on upping my dose of the latest new medicine, and if/when that happens it'll be another couple of months before we know if it's working.

I have good days and bad days. The bad days tend to be marked by horrible pain that makes it difficult to move at all, while the good days are marked by horrible pain that I'm able to fight through and move when I need to. Exercise always seems to help, but it is very difficult to start exercising when the pain is bad. I send prayers of thanks for my sister every time I get on the exercise bike she gave me or use the lift chair so my knees don't hurt so bad.

The doctors are pleased that I'm exercising daily, but I need to ramp up the amount of exercise I do. I'm trying to get on the exercise bike the moment I'm dressed first thing in the morning - and get at least five minutes in. I want to then start adding a couple more short sessions of exercise later in the day. And my doctors said I should start walking again, even if I have to use the cane. I also need to figure out some exercises for my upper body, as my shoulders are often very sore.

I've been streaming almost daily since the start of the year, although this past weekend I was in too much pain to get more than a few test streams in. I don't have a lot of viewers, which is fine, but I'm an affiliate so I have my own emotes. I can use them anywhere on Twitch, and anyone who subscribes to my channel can use at least one of them (all if they subscribe at the highest level). In the event I get some subscribers, I hope to make a few more emotes. But I have to get "subscriber points" to earn emote slots, so I don't expect that to happen any time soon.

My three Twitch emotes. Regular subscribers get access to "SUS".

The best thing about streaming, for me, is figuring out the tech and learning how to do neat new stuff. I have a good teacher at Sophie Fatal TV. Sophie's husband is a tech wizard who also runs online clinics on how to set up OBS (the software people use to stream) and make it do cool things. With his help I've been able to sort out some of the early issues I had and now am expanding into other things. Like a new opening and closing for my stream just in time for my January 20th birthday!

After someone asked me if I intended to put my Twitch videos on YouTube, I remembered that I have a YouTube channel. And so my streams are being archived at my YouTube Channel and I've got a playlist for DC Universe Online going, and a complete playlist for The Room as well as a playlist for The Room Two. I expect I will be terribly embarrassed by those vids as time goes on.

My mother is home from the hospital, but is in a halo brace. I urge you to not Google that if you don't know what it is, because the images will disturb you. My sister is sending the entire family regular updates with photos. I worry about my mom every night, but there's not a lot I can do from here.

Inkwell has finally decided that my lift chair is great, and now is willing to sleep in it. This means I have to evict him from my chair each morning - a chore made difficult by his general cuteness and the way he purrs loudly when I enter the room. But it is my chair, and I need it, so he always loses the battle in the end.