Monday, August 03, 2020

Kidney Saga part 116

Disappointing, but not entirely unexpected.

I just got back from the rheumotologist. My lupus is beginning to show itself, which I suspected when my hands started to hurt. She checked, and said it was classic symptoms. So I need to start taking medication for the lupus. And I suspect everyone can guess just what drug I'm going to have to take. Yup. I'm going on hydroxychloroquine. With a list of instructions on how to avoid dying by taking it (watch for rashes, stay out of sunlight, have my vision checked regularly, have my bone density checked...).

I can honestly say I'm not in the slightest bit thrilled about it. But my lupus is minor enough that taking this drug might well prevent way worse problems. So I'll deal with it.

I'm even less thrilled that the rheumotologist also wants me to slow my tapering off of Prednisone. Instead of 10mg and off, she thinks I should go down to 5mg for a month - after this month of 10mg. Ug. Well, if it keeps my kidneys alive, I guess I'm for it. Perhaps with the lower doses I'll get my face back.

Hubby-Eric started work this morning. Orientation for teachers. He won't have students for a few more weeks. But it's nice to see him "back in class" again.

Inkwell is being a stinker. He attacked my leg this morning while I was playing with him, and forgot his teeth actually can cause harm. He'll grab me with his paws and not use claws, but forgets about his teeth and bites me. Ouch. I'm not entirely happy with him right now.

And we just got a call while I was writing this. The dentist can fit me in tomorrow for a full cleaning, so I have that to look forward to.

I think I'll go kill some pixels in my game to work out frustrations.

Wednesday, July 29, 2020

Kidney Saga part 115

My kidneys continue to improve, even as the world is afire around us.

I have been feeling much better over the past couple of weeks. I can move around without walker or cane, although if I go out I take the cane just in case. Today I had a blood draw at Prosser Hospital and had only my cane. The woman who checked me in noted that I didn't have my walker, as did the excellent nurse/technician who took my blood (on the first try, yay!). I find it slightly amusing that I'm recognized so easily by people there.

The virtual doctor visit with my nephrologist a couple of weeks ago was mostly good news, including positive trends in my blood sugar levels. A few days ago I forgot to take my insulin for lunch and was panicking as I remembered at dinner time, but when I tested my blood the levels were completely normal. I hope that means the steroid-induced diabetes is truly going away.

I had a dental appointment yesterday, which was a strange experience in this time of pandemic. I had to repeat my medical history since January twice, once for the hygienist and once for the dentist himself. Everyone had to wear masks in the office, including the patients. I was only allowed to take the mask off once I was in the chair. I have a follow-up appointment in September to deal with cleaning, since the appointment was too short to do all the stuff they needed to do.

I do have a new problem, and since I'm going to see my rheumotologist on Monday, I'll be bringing it up then. My hands hurt. A lot. Especially when I wake up or make a fist. I have suspicions, but I'm going to ask the experts about it. Hopefully it is something minor. We'll just have to wait and see.

I'm slightly worried about the underlying cause of my distress: lupus. Now that my kidneys and heart are recovering, the focus will switch to the lupus to see what needs to be done to prevent further problems. I only hope it will be tolerable. I have a strange loathing for hydroxychloroquine recently, although it's one of the main medications for people suffering from lupus. I only hope there will be some of it available if I need it, considering the recent stupidity of some people in falsely promoting it as a cure for a completely unrelated illness.

Hubby-Eric got some excellent news that helped both of us feel much better. He's been hired as a full-time online teacher by a company that actually offers a great salary AND benefits. He'll be teaching algebra, and starts next week. I don't know when classes start, but having a solid full-time position is going to help him a lot. Now, if only we could get better internet here. Our current connection is a bit slow for my tastes. I wish we could get fiber.

I used a shower bomb from Frakking Bombs this past Sunday night after letting folks online vote for which of the three scents I would use. I ended up using the lavender bomb, which was very nice. I think I'll probably try the pink grapefruit next. I really wish I could have a bath bomb, but I'm still restricted from taking baths for a couple of reasons, including the difficulty of getting out of the tub. I can stand up in the shower a bit more, but I still have need of the shower bench and have to sit after a short time. I run out of energy very quickly, but I'm slowly building up some endurance.

Another milestone: I can pick up Inkwell again. He's only 15 or so pounds of cat, but for a long time I could not lift him. I've been able to pick him up a few times in the last weeks, and give him cuddles that he tries half-heartedly to escape. He continues to get on my lap with some frequency, and has even sat on my computer mouse and run across my keyboard while I was in a chatroom. So, typical cat behavior.

Again, I have to say I've been extremely lucky. I've been able to get proper care despite the pandemic. I seem to be healing. My husband has been home and available to help me. I have an attentive nurse in the form of a cat. Things could be much worse, so I'm grateful for what I have.

Saturday, July 11, 2020

Kidney Saga part 114

I've closed down my GoFundMe, because most of the bills are now paid.

We received word from the hospital with the last big bill that they are forgiving most of the debt, which means that any extra money we already collected can go toward diabetes supplies and hospital bills the insurance didn't cover. For the rest of the year, we are probably going to be fine as far as medical bills are concerned (knock on wood). At the very least, we are no longer looking at a medical bankruptcy. We're still going to be paying a bit out-of-pocket, but the amounts are not terrifying any more.

Health-wise I'm doing okay. My horrid back pain has been slowly decreasing and I'm able to move around again without the walker (yay!) so I feel much more human. Hopefully the trend will continue and I can get back to exercising. I've been doing "walker squats" when I can, but I really need to get started on a real exercise regimen. Perhaps I'll dust off the Wii Fit.

As I suspected, now that my liquid restriction is higher, I'm not as thirsty. I'm not taking full advantage of the higher amount - but because I know I can, I no longer feel so desperately that I need to drink. It's very nice.

My blood pressure is still comfortably low, so changing the dosage of medicine was definitely a good choice. I'm very happy with my morning BP readings, and I think that part of my system is moving in the right direction. I just wish I knew for sure that my kidneys are recovering. The blood tests are the only way to figure it out, and the doctor said to reduce them to once a month, so I don't have the data to know what's happening from week to week.

This morning when I looked in the mirror after my shower I realized my "moon face" is getting smaller. My face is still round and puffy, but it no longer looks as big as it did. I've been told it was reducing, but this was the first time I truly noticed it myself - as opposed to being assured by someone else it was happening.

As I told the cardiologist, I'm fine mentally except when I read the news. Inkwell has been doing his part to keep me happy, including insisting on frequent lap time with me. He'll get in my lap and butt my hand with his head until I give him scritches, then purr so loud and happy that my pain all goes away for a bit. After a bit he'll roll over and look up at me, still purring. Then he'll either settle down for a good sleep or jump off my legs to go bother hubby-Eric. It's terribly amusing.

I'm working my way through my backlog of comic books I didn't read while I was sick. There's this fantastic series called Fairlady that I highly recommend if you can find copies during this weird time. It was, sadly, canceled too soon, but each issue is an excellent stand-alone story in a well-developed universe with an interesting protagonist. Well worth your time to hunt down. In other reading, I caught up with my Fortean Times issues, which filled my head with all kinds of neat stories. I am hoping I can start writing again soon, as the ideas are all bouncing around up in my head.

I've also been watching one tv/streaming show a night with hubby-Eric. We are caught up on Stargirl and nearly caught up on Doom Patrol. I just have to say, Doom Patrol is truly, truly strange on pretty much every level. Fun, but strange. I've also been working on catching up with my podcasts, with the notable exception of "No Such Thing As A Fish". I haven't caught up with that one because it makes me laugh too hard, and while I had back pain the laughing hurt way too much. Now that my back is feeling better I might be able to catch up with that one, too.

The other thing I've been doing is my MMO (Massive Multiplayer Online) game, DC Universe Online, which is about to drop a new "episode" in August called "Wonderverse". I'm not the biggest Wonder Woman fan around, although I like the character, but this storyline involves the multiverse and a bunch of different versions of Wonder Woman - including the Flashpoint Wonder Woman who killed Mera. In fact, there's a whole area of the open world with Atlanteans, so I'm happy. I listen to podcasts while playing DCUO, which sometimes makes for some strange mental twists.

So, overall, life is getting better for me. I'm worried about the state of the world and the country, but at the moment I'm safe and secure and healing. That's all I can ask for.

Tuesday, July 07, 2020

Kidney Saga part 113

Back in late April, I fainted a few times after my blood pressure got too low. It almost happened again.

I guess it means I'm healing, because I had to reduce my medicine again in order to keep from feeling overly faint. On July 4th when I stood up after eating dinner - with which I had some of my pills, including my heart medicine - I felt really odd. As I started to walk to my room, I realized I was feeling faint and had to sit down. I got Eric to help me to my room and then checked my blood pressure, which was low. I reduced the amount of medicine I was taking and messaged the cardiologist to let her know.

Today I had a cardiology appointment, and the doctor decided to keep me on the lower dosage, based on my experience and the lab results from yesterday's blood tests. So yeah, I'm healing. Maybe there is a light at the end of this tunnel.

The cardiologist also said my blood tests overall show a marked improvement since the last blood test in June. Enough that she even raised my liquid restriction from 1.5 liters to 1.8-2 liters. I can have more to drink every day! Celebration time! Half of my thirst is knowing I cannot have more to drink, so I hope this will alleviate some of the annoyance.

The cardiologist also suggested I get outside a little. A very little. She said I shouldn't stay out much because I will burn quickly, but I should be able to spend a few minutes a day outside. She joked that dermatologists would kill her if she suggested I stay outside for long. As there is a new Pokestop within easy walking distance of our house, I'm hoping I can build up to walking there soon.

My facial swelling (moon face) from the Prednisone is finally starting to reduce a bit. I can't wait to get off the stuff, but I have until the end of August. Next week I get to see my nephrologist, and hopefully I'll get to reduce or remove some other medications, although I'm not counting on it.

Mentally I'm still good. I still have some strange mood swings, which I'm putting down to the Prednisone. Yesterday I actually had a five-minute crying jag which made no sense and wasn't apparently triggered by anything. I just suddenly had to cry. Then it stopped and I was fine. I wasn't actually sad or depressed, so it felt very strange. The Prednisone also gives me nightmares along with memory dumps. I'm hoping that now that I'm on a lower dosage they will get more rare.

Inkwell has insisted on sitting on my lap more in the last week than usual. He's gone back to pushing my laptop off my lap or sitting on the keyboard or (worst of all) attacking the mouse until I move the computer. He'll meow until I let him on my lap if I fight it, so I often give in. I have ways of making him leave if I get truly annoyed at him.

Monday, June 29, 2020

Kidney Saga part 112

Two steps forward, a half a step back?

I'm making progress, I think. I feel healthier, and have gotten used to walking around without needing the walker at all. I can sleep through most of the night now, although I'm having restless leg issues. I have been able to exercise a little - which is nice. I might even be able to go outside into the yard at some point.

But I have setbacks, too. Yesterday was tough. One of my medications (probably the Prednisone) gives me some digestive troubles that lead to severe pain every week or so, and yesterday I had an attack. Add in a massive storm that came through at the same time, triggering my other issues (I always have muscle pain during bad storms) and I was in horrible agony all day yesterday. I had to use the walker again to get around, which depressed me quite a bit. Even the excellent lentil soup my hubby-Eric made for dinner wasn't enough to pull me completely out of it.

Still, overall I am getting healthier. I am stronger, I usually don't hurt as much, and I can move, which is a big deal. I can also think and read, which is a huge deal. For weeks I was unable to understand anything I read, which was frustrating on so many levels. Now I'm zipping through magazines and comics like I'm insane. It feels SO good to be able to comprehend concepts and words again. Now I just need to get my writing back on track. I've looked through some of what I wrote while sick and... um... yeah, I'll hold on to it but it isn't all that great.

I'm on track to reduce the Prednisone again in a couple of days, then the final reduction will happen at the end of July, leaving me with the lowest dose through August. At the end of August I will be off the evil stuff and we'll have a good idea whether or not the chemo worked. Until the Prednisone is gone, we won't be certain. Fingers and toes crossed, though.

Mentally, I'm doing better than most. As a confirmed introvert, the enforced solitude isn't harming me as much as it hurts other folks. And thanks to Twitch and Twitter and the usual suspects that I've mentioned many times before, I have some human contact that I am comfortable with and keeps me sane. Inkwell the cat also spends enough time annoying me to keep me on my toes. I try not to pay too close attention to the news on an emotional level. It would easily drive me insane.

So. After we deal with the kidney problem, then it's time to worry about the Lupus and what impact it will have on my life going forward. I won't know for awhile, and in the middle of this pandemic I'm not willing to think about it too much. But at least I do seem to have a future to look forward to now. A few months ago that wasn't a sure thing.

Wednesday, June 24, 2020

Stargirl and friends

I have not regretted getting DC Universe at all, and have enjoyed a number of shows on the website already. But as hubby-Eric and I just caught up with Stargirl, I thought I'd give a quick overview of the service and what I've gotten from it so far.

First off, the shows. In addition to Stargirl, which is cringe-worthy at moments but still a great deal of fun, we've also watched Young Justice, Doom Patrol, Titans, Swamp Thing and Harley Quinn. I've enjoyed all of them, although Harley definitely is NOT for children. My favorite of the bunch is probably the tamest: Young Justice. I was disappointed in how Swamp Thing ended - a problem with the production, not the show itself. Titans was uneven at times, but overall had strong characters and interesting plotlines. Doom Patrol is just really, really strange and I'm looking forward to the next season. Harley Quinn makes me laugh and then feel bad about laughing - but the themes and characters are spectacular. I am a HUGE fan of this version of King Shark. I wasn't too cool on the Aquaman appearance, but no hero comes off positively in this one.

Stargirl, a legacy show about the reforming of the JSA, is also a very strong show. I sympathize with Beth, in particular.

In addition to these shows, I've also been able to watch older shows and movies on the service. Eric has been watching the 1940s and 50s Superman and I watched the Constantine series from 2014. We've watched Super Friends together as well. In short, we've been able to catch a lot of cool vids.

An unexpected bonus came up recently when the service introduced a temporary rewards program. I was able to get enough points quickly to "buy" a movie that I wanted to see: Birds of Prey. So hubby and I got to watch that entirely because of the DC Universe service!

The service also offers comic books, which has allowed me to read a number of older books that I wanted to read/check out. While I haven't used this as much as the videos (mostly because I had a lot of trouble reading the last few months), I still have gotten through a couple of series I missed when they first came out.

I haven't really gotten into the community at all, mostly because I've learned over the years that I don't work and play well with others, so community forums are not something I should get involved in if I want to stay calm and happy. Nor have I paid much attention to their daily shows. I've just been more interested in pure content.


I'm writing this mostly because Stargirl was a lot of fun to watch this evening, and for perhaps the only time in a long time we are completely caught up with the shows on DC Universe we want to watch.

Wednesday, June 17, 2020

Kidney Saga part 111

Yesterday was my best day in months.

I had strength, I had energy, I was able to get up and down and the stairs without difficulty (for the most part). I felt fantastic compared to the past few months. I was happy - and surprised at how happy I was. It was a lovely day. And instead of overdoing it, I recognized that I was still a bit weak and took a nap in the afternoon. So I felt decent when I woke up this morning, too. In fact, I was able to make part of my lunch today! Maybe tomorrow I can do the whole shebang myself and spare Eric the work.

I just got off the Zoom with the nephrologist, who says my kidney functions are getting much closer to normal. Not quite there yet, but so much better. With the last of the chemo done, now we just have to wean me off the Prednisone and monitor my vitals to make sure I don't relapse. He made a small medicine adjustment, but for the most part I'm just staying the course for the next few weeks.

Basically, I can see the light at the end of the tunnel, and I'm hoping to get there soon.

My beard continues to grow, and I am amused and disturbed by it. I don't dare shave it, but I have found myself absently pulling out hairs. I just hope the hair will go away once the Prednisone goes away. A little more than two months before that happens, though.

Once I'm off the Prednisone, my immune system will start to rebuild. The doctor said it would actually begin coming back once I'm on the lowest dose, in August, so by September or so I should begin to be a little safer than I currently am. So I need to avoid catching any other colds or viruses before then, I guess. That shouldn't be too hard with me in lockdown and hubby-Eric taking all precautions whenever he goes out.

My back pain is pretty much gone, knock wood, which is incredibly nice. I attempted to sleep in my bed flat last night, but in the morning I had a tiny bit of back pain, so I'll continue using the wedge pillow for a bit longer. It does feel like I should be able to sleep normally again, but I'm not quite there yet.

We are still awaiting word about one large medical bill. We requested relief, and sent in our information. We now qualify for food stamps - even under the more strict rules. But we don't know if we will get a reduction in the medical bill, which is close to $5000. We just have to wait and see.

So, it's now a case of wait-and-see, and there won't be a lot to report on unless I relapse or dramatically improve.

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

Sunday, June 14, 2020

A Sunday Comic Books Review

Here are quick and simple reviews of some comic book series that I've gotten around to reading:
  • Four and a half StarfishNaomi #1-6 - I really enjoyed this series. I like Naomi, I like how she's very much her generation, right down to the "gotta see the superhero" stuff. I like that she's practical about suddenly having powers. I like the back-story. I just enjoyed this a lot. Good artwork, fun concept, a new character with a fairly unique origin in many ways - just an all-around fun book to read. I'm looking forward to her future appearances and seeing how she is fleshed out as a superhero.
  • Four StarfishWonder Twins #1-12 - I really didn't know what to expect from this series. I was slightly afraid it would go grim and gritty, but fortunately that didn't happen at all. Instead, it was silly with an underlying pathos that gave it enough depth to enjoy on multiple levels. I'm still grinning about "Thunderlust", but also feel for Jayna's pain and worry for the world and her friendships. The connection to the regular DC Universe seemed odd at first, but I managed to justify it with the idea that this is the way Zan and Jayna see the heroes they are working with, not the way the rest of the world sees them. There are flaws, but overall this is an excellent series worth a read.
  • Three StarfishDial H for Hero #1-12 - For me, the Dial H series are all hit-and-miss. I like some bits and hate others. This one rubbed me the wrong way a lot of times, with the Robby Reed gee whiz nonsense. Good concepts, but the writing felt off. As I learned about Mister Thunderbolt's plan, it seemed oddly familiar. Then I realized it was the concept behind the DC Universe Online game, in which a future Lex Luthor jumps back in time to seed the Earth with "exobytes" that trigger superpowers in most of the population (thus allowing the players of the game to have superpowers). Mister Thunderbolt just wanted to do the same thing to everyone in the Multiverse. So, yeah. It didn't seem all that much original an idea to me. The only thing I really disliked was the constant pausing for "origin stories" that I wasn't interested in at all. I know, it's a fun thing and everyone loves it - except me. I just want to read the story, not another boring origin of a character that I won't see again after five pages. I wasn't sure what to think of Miguel's story, but I liked Summer quite a bit. Not my favorite of the Wonder Comics series, but not too bad.
  • Four and a half StarfishYoung Justice #1-12 - Everything in Wonder Comics comes together as Young Justice is re-formed with all new characters (I love Jinny) and some older stalwarts. I really liked this, even though the sheer number of characters was slightly too many and I have no interest at all in Gemworld. Seeing Conner again was nice, and I'm very interested in the mystery of why Robin cannot remember the team. The whole "lost in the Multiverse" bit was great fun, until it wasn't. The Kingdom Come universe was pretty scary in its implications. I loved how Naomi, the Wonder Twins and eventually the Dial H kids joined the team at the end of the first arc. Definitely looking forward to more from this group, and I hope DC keeps it going for awhile.

Saturday, June 13, 2020

Kidney Saga part 110

My beard is coming in nicely.

Yeah. Prednisone. Steroid-induced hair growth all across my body, including my face. Fortunately for me, it's happening as I'm tapering off (two and a half more months of the stuff) and also fortunately I have thin hair that is generally light in color, so it's not blindingly obvious. But I'm definitely growing a lot of hair all over my body that I've never grown before. I'm finding it very uncomfortable. I do hope it goes away quickly once I'm off the steroid. There are so many side-effects I hope go away quickly.

Since I last wrote, I've had up days and down days, but mostly up. My back pain has come and gone, but the doctor worked out what was most likely causing it and the medicine is now working to... um... relieve the pressure. Let's just say it seems to be working, and that's good enough for me. I do have more tests scheduled just in case, but I have been able to move around more freely the last few days, including getting up and down the stairs. I've been trying to take my lunch downstairs whenever possible.

Hubby-Eric continues to hit it out of the park as far as food goes. This morning he made a breakfast casserole that was just amazing. He's also made kidney-friendly sloppy joes, tacos, spaghetti, fettuccine alfredo and rice pilaf. And I'm probably forgetting some other awesome meals he's made. Extra servings get saved for lunches, which means I'm well-fed pretty much all the time. I seem to have stopped losing weight, but I'm ok with that for now. I've gone downstairs for lunches, but I find I'm still a little too weak to make my own lunch most of the time. I can start, but I tend to get very tired very fast and Eric takes over. When Eric had a Zoom conference during lunch one day, I managed, but it took me a LONG time and I had to rest between steps, meaning the meal was cold by the time I was able to eat it. Ah well. Progress is being made.

Inkwell continues to monitor my situation, and frequently pushes my laptop off my lap so he can sleep on me. I'm a glorified pillow to him. He swats away my phone if I try to play with it while he's on my lap, as well, which can get annoying. He's a very confused cat - he can't figure out why I'm so weak and tired. And he is always shocked when I make it downstairs. He also makes sure that both Eric and I are awake and up by 5 am every morning. His meowing does not have a snooze button.

While I'm improving physically, my mental state has been all over the place. I continue to have memory dumps that are nearly hallucinations due to the Prednisone. There are moments I feel like crying for absolutely no reason, and times I laugh without knowing why. The mood swings are awful and disturbing. I hope they go away when the steroid goes away. I still cannot handle reading or watching the news for more than a couple of minutes every hour or so because I get angry/sad/happy/insane and lose all sense of perspective. The raw thoughts that surface bother me immensely. I'm trying to keep tabs on everything that's happening without going insane - which would be hard enough if I was healthy.

My solace continues to be my friends on Facebook, Twitter and Twitch. I spend a good bit of time watching SophieFatalTV on Twitch because of the positive attitude the hosts present. My friends on Facebook tend to post awesome stuff. And Gail Simone is a shining lamp on Twitter, along with current Aquaman writer Kelly Sue DeConnick. With all the crap going on, I can still find some good in the world with my online friends.

In short, life is going well. I have some bumps and tough spots, but I still feel extremely lucky. I'm in a better place than a lot of people, and I'm continuing to improve. With luck, I'll improve a LOT more in two and a half months when I'm finally off this awful medication. Time will tell.

Pandemic-prepared Aquaman, by Paul Trap

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

Tuesday, June 09, 2020

Kidney Saga part 109

Not a lot to report in the last few days.

I've been marking time, living with back pain, otherwise doing fine physically. Mentally I've been in a different place, but that's becoming the new normal.

My latest blood test results were positive, with everything still headed in the right direction. The last infusion gave me some nausea and not much else.

There just isn't much to tell, so I haven't been telling much.

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

Thursday, June 04, 2020

Kidney Saga part 108

The last infusion went well.

The nurse with the awesome sleeve tattoo was called over to insert the IV, as the other nurses had figured out my arms are too picky for anyone other than an expert. She's clearly the best at it, and this morning there is no bruise - not even a mark to show where the IV went in. In contrast, the IV spot from two weeks ago still has an ugly purple bruise.

If all goes well, this will be the last chemo I endure. There's a possibility of follow-up, but that depends on a lot of factors that I don't entirely understand and will be discussed with me in future appointments with the nephrologist.

In the meantime, I need to exercise as I am able and see if my strength returns. My immune system won't recover for awhile, so I still need to stay isolated, but in a few weeks that will start to be less of a worry - although still a worry.

My back pain is still a very big problem, but the doctors have ordered some tests to rule out certain possibly serious issues, and both the nephrologist and rheumatologist think it's not too serious because of the lack of other symptoms to go along with it. I most likely pulled a muscle or am having digestive problems.

The nausea returned last night, but I was also so tired that I barely managed to stay awake for half of an old Supergirl episode Eric and I were trying to get around to watching. Sleep overcame nausea, and I slept for many hours before my bladder woke me. It sometimes seems like life is just waking up to eat, pee, and then go back to sleep.

Inkwell the cat was very interested when I got home, jumping up into my lap and sniffing my arm near where the infusion went in. He then shook his head a couple of times, clearly not liking what he smelled, and gave me a Look before jumping off and wandering away. I guess my arm really didn't smell all that good. The cat knows I've been sick, but sometimes I'm not sure he knows how to react to it.

As for everything else happening in the world - I am watching. I cannot do much at this moment, but I am watching and will not turn away. I fear for my country, but these hands are too weak to join in. But I will witness. It is truly the least I can manage.

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

Tuesday, June 02, 2020

Kidney Saga part 107

Tomorrow is infusion day. Hopefully the last one.

Yesterday I had a blood draw. There was something happening in the Emergency Room at the Prosser Hospital when I got there that was occupying pretty much all the attention of the lab. One of the folks who knows me as a regular quickly walked by on her way to the ER and said, "We may be awhile, sorry." I got out my phone and started reading a magazine while I waited.

Eventually the fantastic nurse - who can draw blood without any pain and never leaves a mark - came in, saw me, and said she would take care of me. It only took about five minutes once she was there, so life was great. I love that woman. I wish she was in charge of all my blood draws. She saw the huge purple bruise from my last infusion and just shook her head in dismay. "They shouldn't do that," she said.

I've started my tapering off the Prednisone for the month, and I'm impatient to see if it results in less facial swelling. So far, nothing, but it's been - oh - two days. Yeah. I'm being a bit silly.

Health-wise I seem to be doing as fine as possible. I'm hoping to hear from the nephrologist soon about the latest blood tests, and then I'll know more. I'm also seeing the rheumatologist tomorrow, so we'll get more information then. It'll still be August before I'm off the Prednisone, and I have no idea when I'll be able to drop other drugs, if I am ever able to drop them. Time will tell.

As for my mental health... not so good.

There is a large part of me that wants to be out and in the streets with my fellow citizens, but I can barely stand at the moment. I watch the news, and find myself shaking and crying with anger and frustration. I want to comment, but I find myself mute because so many others are saying what I want to say with more authority and eloquence. Also, the color of my skin means that I will never truly understand the sheer horror that other people with different skin colors are going through and have gone through their entire lives. My viewpoint is not needed at this time, but I wish I could do more to help.

Understand that I am here and I care, but my ability to do anything at all is severely limited thanks to my illness. And that is driving me crazy.

Enough. There are other voices you should go listen to today. Mine is not important. I've updated, I'll probably update again Thursday morning. Let's hope we still have a country by then.

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

Sunday, May 31, 2020

A Sunday Comic Books Review

Here are quick and simple reviews of some comic book series that I've gotten around to reading:
  • Four and a half StarfishAquaman #43-49 - Reading and rereading through this storyarc was fun. It definitely has a different feel when reading it all at once. I'm not sure I like the whole dying and rebirth thing. I'm kind of tired of Aquaman dying. But I can overlook that and enjoy the tale for what it is. I like the introduction of the sea gods and the mythology presented there. I don't think Arthur's reaction to learning about the pregnancy was particularly correct for his story, and Mera's reaction was over-the-top stupid, but again, I'll overlook it for the sake of the story. Everything else seemed pretty spot on. Having him return with a whole new set of super-powered beings to his home in Amnesty Bay was an interesting twist I really wasn't expecting at all, so I'm looking forward to seeing how this works out with the locals. Good stuff.
  • Three and a half StarfishAquaman Giant #1-3 - Almost no new material, but a very good selection of old material. I notice the new stories are also being reprinted as "digital first" in Aquaman: Deep Dives. The new stuff is mostly standalone, but the older stories are connected, which might make them difficult for new readers, which I'm guessing these are aimed at. I'm not sure how I feel about it all, but I applaud DC for the effort of making these.
  • Three StarfishHeroes in Crisis #1-9 - A mini-series with a mystery at its center. I liked the mystery, but the rest of the series - especially the deaths - was not really my cuppa. As a superhero story, I felt it lacked a lot. It's a good concept - superheroes are as vulnerable to PTSD as anyone else and a place for them to recover is good. But the very very very slow revelation of the story didn't work well for me. The first three or four issues were almost unneeded and could have been combined into one book. The series really didn't pick up until the reveal of the true culprit. The very strange "team-up" of Harley Quinn and Booster Gold was one of the few things I actually liked about the series, as the two of them do play off each other nicely. But the relationship alone wasn't enough to really sustain the book. I didn't hate it, but I didn't feel I gained much from reading it.
  • One StarfishMartian Manhunter #1-12 - Wow, I really hated trying to read this book. The art was very much not my bag, and the way it was written turned me off immediately and kept me from enjoying the story. There were some great concepts presented, but I couldn't get past the art, which (apologies to the artist) looked like a caricature artist fell off a truck and then kept drawing with a broken hand. Not a style I enjoy at all. Add in a color palette that made me nauseous just looking at it, and I just did not like this series at all. I struggled to read it and was relieved when I was through it. I only finished it in the hopes that it would get better. It didn't.
  • Four StarfishScooby Apocalypse, last few issues/series as a whole - There were moments I didn't like this series, and moments I really enjoyed it. Overall, it was a mixed bag but a lot of fun to take characters that I was familiar with for all my life and turn them into Elseworlds versions that actually endured drama and pain instead of simple mystery solving. Was it standard Scooby-Doo? Heck no. But it was a fun ride for all that. I enjoyed it for what it was and not for what it was based on. The ending was decent, although a little pat. The sheer trauma of the whole event would certainly cause more problems in the future, so the optimism seemed a little thick. But overall, an interesting experiment in storytelling. Not bad at all.
  • Three StarfishThe Green Lantern #1-12 - I'm afraid I've never been a big fan of Grant Morrison's writing. His ideas are lovely, but the execution often leaves me a bit cold. This series follows the usual pattern. I like the concepts, but the writing and the flow bother me a bit and I'm just not as into it as other folks. The art was gorgeous for most of the series, but the writing - meh. I would love to say it was mind-blowing and all that, but I couldn't connect with the story enough at times for it to actually blow up my mind. This is not the fault of Morrison - this is just an incompatibility between myself and his writing. I'm guessing a lot of other people loved this intensely. Good for them.
  • Two StarfishGreen Lantern: Blackstars #1-3 - Morrison. Not really my thing. I can't really say much more without being mean, I think. Fun little concept, but I just could not get into the story. I think I'll move on to the next series.

Kidney Saga part 106

Thankfully, there's not a lot to report.

Since the good news on Friday, I've been marking time until my appointments this week. Tomorrow is blood draw day, and I have some other tests that need to be run, and then Wednesday is my final (hopefully) infusion day.

I've been both tired and energetic in the last two days. I managed a couple of trips downstairs on Friday, but yesterday a major storm moved in and triggered some pain in my body, which kept me from getting as much done as I wanted.

Hubby-Eric continues to make excellent meals and try out new recipes. He's having a blast with the Instapot, and he's been hitting it out of the park as far as food goes.

Inkwell has continued to be very clingy, including literally pushing my laptop off my lap this morning in order to get some time with me. I was cute but annoying, and delayed me writing this.

The big thunderstorm passed over us and did little damage here. It was mostly a few rattles and booms, a tiny bit of rain, and a few moments of flickering lights. It hit other areas much harder. It was noisy but not bad here.

I have been watching the news, but also avoiding the worst of it. I'm still in a very strange mental state thanks to the medications, and until I get off the prednisone at least, I'm not able to emotionally handle much. Fortunately, I get to taper off the prednisone more starting tomorrow (YAY!) so I'm on my way to some form of normalcy soon. Hopefully I'll be completely off that stuff by the end of August.

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

Friday, May 29, 2020

Kidney Saga part 105

I actually have tears in my eyes right as I'm writing this because of something I read in my medical information.

Our request to reduce our HUGE bill from KADLEC has been approved. By 100%. So half of the $10,000 we owed in medical bills is now gone. Half of it. I am literally crying from relief. I didn't realize quite how horrible I felt about not being able to pay, and the lifting of that burden is such a profound relief I can't stop crying about it.


Right. So, yesterday. Our internet was out for 28 hours, and didn't come back until 3pm yesterday afternoon. In the meantime, we had stuff to do online. I managed to hook up my phone as a hotspot to post my kidney update, but it was difficult because Windows doesn't work and play well with others. But I managed for a short time and got a couple of things done.

But Eric had a virtual teacher meeting he needed to attend, so we headed down to McDonald's to see if we could use their free wifi. Because we were planning on leeching, we bought two chocolate shakes. Yes, I had a chocolate shake. I knew it wasn't a great idea, but I will allow for failure in my life. I found out the hard way that if you don't accept failure at times, you end up falling much harder when you inevitably do fail. So I figured yesterday would be a failure day, and I would deal with the consequences of having way too many carbs at once.

McDonald's wasn't great, but we managed to find another free wifi that allowed Eric to get into his meeting and we sat in the hot car for a bit. I played around, getting my Android games played and checking FB, Twitter and my mail. Once Eric's meeting was over, we went home to wait for Centurylink to get their act together.

Inkwell thought the internet outage was great. He spent pretty much forever on my lap while I read. He was very fuzzy and very clingy. When the 'net came back he was clearly disappointed because my laptop took over his spot.

A friend in Sunnyside (Hi Sara!) loaned me a heating pad. I turned it on immediately after she dropped it off and it really helped with my sore back. I am so grateful for helpful people. I'm using it now and it is helping a lot.

I expected to feel ill from the McD's shake, but instead I felt great. I mean, I felt wonderful. Better than I had in a long time. When I checked my blood sugar, it was actually right in the proper range. I was stunned, because those shakes are NOT low in carbs. I expected my blood sugar to be way high. It gives me some hope, but I'm not going to celebrate just yet.

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

Thursday, May 28, 2020

Kidney Saga part 104

I had an interesting two days, for all they were fairly boring in many ways.

The back pain made it difficult to do anything productive, but on Tuesday Eric and I finished installing the bidet. The big problem with its installation was that our toilet seat was non-standard and had connectors that didn't fit. So Eric got a new toilet seat - but bought one the wrong shape the first time and had to exchange it. As he only goes out about once a week, the whole process took awhile.

So on Tuesday we finally got down to business and got the thing installed. And it's - interesting. It definitely helps in the medical situation I'm currently in (which involves laxatives and pee pills) and it certainly gives me a nice clean feeling. But it is pretty cold at first and will require a little getting used to. Still, another task done.

Over the weekend, I noticed that the back pain didn't seem like my normal lower back/spine pain. In fact, as the pain came into focus, it seemed to be centered a little higher on my back and on my right side, mostly. I realized at some point that it was very near where my kidneys are. Um. Okay, terrified now. I wrote to the doctor immediately with the information. But it was a holiday weekend. Another thing that distinguished this current pain from my usual back pain is the fact that when I took some Tylenol, it actually helped a little. My usual back pain isn't touched at all by normal painkillers.

Wednesday morning I got a call from the nephrologist's office asking for an immediate virtual doctor visit. I guess my alarm was echoed by the doctor once he learned of the back pain. The meeting happened at about 10:30am, and basically we ran through a checklist to make sure it isn't an infection. Since the pain is literally the only symptom, he was relieved but ordered a few extra tests for me to take during my next venture out. He'll also be checking my blood draw information carefully. He suggested using a heating pad for comfort. Of course, we can't find the one we know we have, so I'll just have to do without, I guess.

At 11am our internet went out. I was fortunate that it happened after the doctor visit. I called Centurylink immediately, and went through the recording troubleshooter steps. I suspected a bigger outage, but I called so quickly that the system hadn't registered it yet. I called again after an hour and, sure enough, big outage in our area. They said the 'net would be back by 3pm, so I settled down to read, then took a wonderful nap.

When I got up at 4pm, the 'net was still out, so I called again and the new estimated fix time was 7pm. I have a LOT of reading to catch up on, and can also do writing without the internet, so I didn't find myself put out too much. Until the internet was still down at 7pm and I called again. This time the estimated fix time wasn't until this morning at 5am. This morning at 5am with the internet still down, I called again and got an estimated time of 10:30am.

We have mobile data through Ting, which means we pay as we go and only for what we use. We generally do not use mobile data for that reason. We usually don't need it. I'm currently using my phone as a hotspot so I can post this.

In other news, I probably need to get a new loofah puff for my showers, and I definitely need a loofah or soft brush with a handle so I can properly clean my upper back. I guess I'll put that on the shopping list for Eric.

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

Tuesday, May 26, 2020

Kidney Saga part 103

The back pain is killing me.

I woke up this morning thinking it wasn't so bad, but it got progressively worse as the morning wore on. It's been pretty obnoxious since the weekend. It's pretty much filled my every waking thought.

So. Not much else to report. I don't have a lot of desire to keep writing, either. I'm hoping the pain goes away and I can get things done, but that's just how life is going.

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