Lupus Saga part 4

I have discovered that in my dreams, my hands do not hurt. They hurt all the time when I am awake. But my dream persona doesn't have sore hands. In fact, my dream persona is able to do chin-ups, as I learned last night in a vivid dream. I can still feel the surprise and joy when I managed to pull myself up on a bar - I felt powerful and strong and wonderful. I thought to myself, "I'm so glad I can do this now!" and laughed. And shortly after, when I woke up, I still felt the happiness, and the disappointment did NOT overwhelm it.

Today I saw the rheumatologist for a check-up. I'm improving, dramatically, according to my bloodwork. My overall health is slowly improving. The doctor was very pleased to learn that I've done at least five minutes a day on the exercise bike every day this year, and the "movement is medicine" mantra seems to be true, in my case, as I'm having very few problems with my legs.

My hands, meanwhile, continue to hurt. And I cannot lift my arms over my head without pain. Plus, I've got a bit of "Golfer's Elbow" thanks to sitting at my computer too much. I have some exercises that should help with that. One of them involves "walking" my hand up the wall until my arm just starts to twinge - but letting my fingers do the effort of lifting instead of my arm. I also am getting a couple of cheap weights to do regular curls. I plan on doing them on my morning streams.

Speaking of, I am streaming regularly in the mornings on Twitch. I've been usually doing about five hours of streaming, mostly playing Stream Raiders, sometimes on cam and mic, sometimes off. If you want to pop in and say hello, I'm at twitch.tv/realtegan and usually start around 7 am Pacific and go until about noon. I monitor the chat almost constantly, so if you make a free Twitch account and write in my chat, I will probably answer... unless I'm in the middle of a Stream Raiders battle.

I had no obvious side effects from the COVID vaccine I got on April 6th, just a very slightly sore arm that didn't bother me half as much as my hands do every day. I did venture out to a restaurant when my sister visited, which was quite daring for me.

Hubby and I invested in HBO Max so I can watch DC movies, and I've taken full advantage of the service already, getting my money's worth. In addition to DC movies, I also went ahead and watched Godzilla vs Kong (fun in a classic monster movie sort of way) and Mortal Kombat (I expected violence and very little plot, I got violence and very little plot). After watching the Godzilla movie, I went back and watched the other three movies in the modern franchise - they were all fun. I didn't bother doing the same with the Mortal Kombat franchise, though. I also finally watched The Matrix all the way through, and found it much more compelling when you actually pay attention to it. I don't have any particular desire to see the sequels, but I may change my mind. I watched the Halle Berry Catwoman movie, and decided that it isn't a DC Universe movie at all - it just borrowed the name and almost nothing else. It's what a movie called "Catwoman" would be if someone who had never read a DC Comic and only knew about the superhero genre from Spider-Man wrote it.

I also tried to watch Cats, but the modem committed suicide while I was streaming it and I've been sternly warned by both the Spectrum internet tech and hubby-Eric not to try to finish it. No, not even just to listen to the songs. We don't want to lose another modem.

I do not play League of Legends, but I've found their music videos to be very interesting, which led me to look up the lore of the game - and it goes VERY deep. I'm not sure how deep I'm willing to go into that universe, but it's interesting and has been somewhat inspiring. The music is helping me trigger writing sessions. It's odd, if I'm writing while music is playing I will not actually hear the music, but if I stop writing for a bit, the music can help trigger another spurt of writing. So I play the music and hope for inspiration. One story I got quite a way into writing and felt like I need a first reader for it, but I'm not sure I'm currently brave enough to let someone else read.

So that's my latest update. I'm still keeping on, lots of pain, but still living. I guess I'll just have to see what tomorrow brings.

Full Kidney Saga (Start Here)

Full Lupus Saga (Start Here)

Lupus Saga part 3

Oops.

Yeah, I meant to write a blog entry, but would put it off for "a day or so" until I got more information. Then after a week or two, I'd think, I ought to write a blog entry, but wait, there's an appointment next week, I'll do an entry right after... And then another couple of weeks would pass. So, I have no actual excuse.

As I said in my last entry, my kidney disease is in complete remission and the kidney doctor says my blood tests show my system is processing everything normally. I'll have to continue having follow-up check-ups, but I can stop worrying about kidneys now.

My main issue is the lupus, which has decided to attack my joints. The most pain is in my hands, which hurt all the time. My knees are sometimes in pain, and it's still difficult to get out of a regular chair (thank goodness and my wonderful sister for the lift chair!). Getting up and down the stairs has become slightly easier overall. I've also gotten at least five minutes on the exercise bike every single morning - even on bad days - since I last wrote. The other bad spot is my shoulders, which I cannot lift over my head most of the time.

The big news today is that I got the vaccine for the coronavirus. Eric and I got the Johnson & Johnson version at a local pharmacy this morning. We then wandered around the store for a few minutes (to make sure there wasn't any reactions) and then headed home. I'm actually feeling pretty delighted to have it done - there was a line forming in the store for the vaccine by the time we left.

I've seen some worries about how fast the vaccines were developed, but there are two big factors that helped complete these vaccines: 1) the tech behind them has been in development for about 60 years (look up mRNA vaccine development) and 2) because the disease was so widespread, trials were more comprehensive and easier to conduct than if the virus hadn't been endemic. Add in the fact that the vaccine development was accelerated during the SARS crisis in 2003, and anyone who is paying attention understands that these vaccines were not developed fast - just finished and approved fast.

I've mostly been spending my days streaming in the morning and reading or watching videos in the afternoon and evenings. I'm not healthy yet, but I'm healing and making progress. I have regular blood tests and doctor appointments, and five days of every week I feel pretty good. But it's those other days, the bad days, that keep me from celebrating. I will sometimes wake with so much pain I just don't want to do anything. I usually force myself to stream since that's my only socialization at the moment, but will stay off the camera and sometimes even off the microphone.

I guess one reason I haven't been writing is that I haven't got much to tell. I mean - it's all the same news. I'm in remission from kidney disease, the lupus is painful, I'm streaming on Twitch, the cat is cute, the hubby is wonderful. I don't get out much, so there's nothing new coming in for me to write about.

Ah well. At least life, overall, seems to be looking up.

Full Kidney Saga (Start Here)

Full Lupus Saga (Start Here)

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.

Full Kidney Saga (Start Here)

Full Lupus Saga (Start Here)

Lupus Saga part 1

Time to start a new chapter in this book, eh?

A year ago I went in for blood tests after feeling unwell for a couple of months with what I wrongly believed were allergies. The next morning the doctor ordered me to the emergency room because she suspected my kidneys had failed. As it happened, my body had gone into kidney and heart failure due to lupus, which I may have been suffering from for a number of years without knowing it.

The kidney failure nearly killed me, and the cure had its own problems. The steroid that kept me alive gave me temporary diabetes as well as inflating my face to balloon-size. The first attempt at bringing my kidneys back to full function resulted in massive rashes and worse, forcing me into chemo. Luckily, the chemo worked, and I have been slowly recovering the past few months. Now the lupus has become my main issue.

Not a lot has happened as far as my health goes in the last month since I last updated. I kept thinking I would update when I had news - then I didn't have news. I still don't. My next appointment isn't for another week, and although I've had a blood test, the results - that I can understand - just show more improvement as expected and nothing dramatic.

I have good days and bad days. My hands hurt all the time, no matter what I'm doing. They are worse in the mornings. My legs are good at times and bad at other times, with my knees having the worst issues. Thankfully, my house has been made as friendly as possible to my condition, so I'm not having too many difficulties getting around and doing daily tasks like feeding myself. My long-suffering hubby, Eric, has also been able to help on those days I just cannot manage.

My biggest difficulty is keeping myself busy both mentally and physically. I've been playing a lot of video games, which isn't ideal, but does keep my mind going. I use an exercise bike for physical movement, but I feel like I need more. I haven't been out walking because of the virus, as well as the general difficulty getting out and just walking.

I'm still waiting for the new medication to have its desired effect, although I think it's beginning to work. I have had a few more good days in the last week than bad days. And the goal is for my lupus to stop attacking my joints, which is what happens on a good day. It's still too soon to be sure, though. Another few weeks is when the studies I read said it would become obvious. I would cross my fingers, but that hurts.

In other news, Inkwell has his own merchandise. Mark Monlux created RedBubble shops for his line of people's cats, and Inkwell is on it (with my permission). I haven't been able to buy any of it yet, but my sister purchased a couple and has been amusing me with photos of Inkwell merch around the house. The real cat, meanwhile, has continued to make my legs his favorite daytime cat bed.

CBS News made a short video tribute to PBS, and hubby-Eric actually appears in it! He's about 90 seconds into the piece, sitting at a phone bank while our friend William talks to Dalek Rainier.

As our Centurylink internet service has been degrading ever since Centurylink took over and bought the original company we signed up with, we finally made the hard decision to move to another service. I don't like moving internet providers for a lot of reasons, not the least of which was needing new hardware to go from DSL to Cable internet. I ended up buying a new coax cable and a new router, but frankly the advantages are truly worth it. The new internet, from Spectrum, is on average about 15 times faster than the old. But most importantly for Eric's teaching job, it doesn't keep dropping the connection. Centurylink had gotten so bad as to drop our service a couple of times a day. And while most of the outages were in the evening when Eric wasn't teaching, not all of them were. Since signing up with Spectrum, I haven't noticed any disconnects.

The decision to upgrade our internet has had another unforeseen effect. I'd been being encouraged by Sophie Fatal to try streaming with Twitch, but knew our internet couldn't handle it. Heck, there were days I couldn't *watch* Twitch because of outages and the incredibly slow speed. But with a fast internet, I started to think about streaming seriously. On December 31st, I woke up in such pain that I couldn't do my usual stuff online, or even play my game. What I could do was read online, so I read about how to get started streaming on Twitch. And before the end of the year I managed to stream three very short test streams, and one longer stream. I deleted the test streams and left the longer one up. Then on the first day of 2021, I streamed my favorite game, DC Universe Online, for a bit over 30 minutes. So. I guess I can call myself a streamer now.

Another thing that fast internet did was finish my online backup. It was due to finish in February with the old internet. It finished with the new internet in less than a week. My entire hard drive backed up online. Nice.

In other news, I found a couple of cat-related mods in Fallout 4. One, called Craftable Cats, allows you to make cats for your post-apocalyptic settlements. Naturally I went a little nuts on them and made a few too many. This didn't last, of course. I had to go back to an earlier save because having that many cats just KILLS the framerate on the computer. But it was fun anyway. The other mod is Immortal Cats for those of us that cannot, for whatever reason, bear the sight of a dead cat even in a game. Despite the description in the mod's notes, this did lead to an amusing incident when a robot started attacking cats that were weaving around its feet.

In family news, while I started the year in the hospital, my mother ended the year in the hospital. No, she didn't get COVID (at least I hope not), but instead somehow managed to break her back. I've questioned my siblings, but we aren't sure which one of us stepped on a crack. While she's putting up a good show, I know she's in a lot of pain. I hope she's able to get home soon.

Full Kidney Saga (Start Here)

Full Lupus Saga (Start Here)