Saturday, October 17, 2020


Thursday, October 15, 2020

Kidney Saga part 123

I went to the rheumatologist last Thursday for a follow-up/check-up on my new medication and pain. She ordered X-rays on my hands, knees and feet so we can get a baseline - and to see if the lupus is already causing damage.

She also decided to keep my HCQ (Hydroxychloroquine) dosage the same for now, and discussed some options for future treatment. Due to my body's rejection of the first drug we tried for kidney failure, some treatment options are denied to me.

When I mentioned my fatigue, she noted that going off the Prednisone after being on it for nearly nine months would be tough on my body, and I could expect some rough patches. I've had some very down days and some days when I felt almost normal. And some days when I thought I was fine until I tried to do something. I have to keep reminding myself that I'm still sick and stop trying to overdo it. I gotta walk before I can run.

While at the doctor's office I also had a blood draw and got a flu shot. Lots of stuff going on.

I got an echocardiogram on Monday to check how my heart is progressing. The last one I had was in an emergency room when I was barely conscious, so this one was interesting. For most of the procedure I could see the monitor and therefore was looking into my own body. The valves were so vivid - I was surprised at how clear the image was. I don't know what it found yet, but I actually enjoyed seeing it.

I got risers for my chair and for the couch, and both have helped immensely in getting up. My knees still hurt quite a bit when I get up from my chair, but nothing short of a lifting chair/cushion will stop that, I think, due to the nature of the chair. Lifting the chair two inches still helped a lot even if it still hurts. And getting up from the couch is almost painless, although I still need to brace myself and push up with my arms.

The lavender treatment has dramatically decreased the annoyance of my hot flashes. I'm down to maybe one or two a night instead of a dozen or so, and they aren't nearly as severe. I'm going to keep getting lavender shower bombs and leaving them near my computer before I use them in the shower. The scent is clearly helping.

I'm still using the exercise bike, and to my surprise I haven't missed a day since I got it. I know I eventually will have a day that I'm just too tuckered out to ride it for even five minutes, but so far that day has not come.

Inkwell and hubby-Eric continue to survive, as well. Inkwell has been getting more cuddly as the days get cooler, so I'm turning into a glorified cat bed more often. And Eric is teaching heartily and keeping in touch with his students. My waking hours are spent mostly playing DC Universe Online and writing on various projects.

Wednesday, October 07, 2020

Who Is That Masked...

Now that I have my excellent Dick's Drive In mask, I'm looking at my wish list of other masks I'd like to get.

First up would be a toss-up between the Aquaman themed mask and the Doctor Who themed mask from TeeFury:

TeeFury also has a couple of EXTREMELY timely masks that I wouldn't mind getting just for the collectible/memory value:

The Museum of Flight has a good one that I would like to get:

And after all the protests, who wouldn't want a postcard from Anarchist Seattle on their face?

But I guess the best one of all is one that we should all keep in mind during this whole pandemic thing:

Saturday, October 03, 2020

Kidney Saga part 122

I want to thank people.

I want to thank people, but I don't have the words to thank them enough. I want to thank the folks who supported us financially, and the folks like Anna and Elayne who sent socks and other needed objects. The person who, very early in my sickness, sent me a $50 Amazon gift card that literally kept me clothed. The folks who bought a humidifier, and the bidet. The folks who contributed to my GoFundMe, including the streamers on Sophie's channel. My sister-in-law, who not only gave me stuff to help but also provided advice and calming information.

I want to give you all the hugs and kisses and praise and happiness.

You helped us. You helped us a lot, during times that were really bad. Life has improved dramatically for us, with Eric now employed and my health slowly improving. I don't have enough thanks to give to everyone who deserves thanks. I hope I am past the worst of it, and can just concentrate on healing now. But I wouldn't have made it this far without all the support I got from other people.

Right. Health update time.

I'm off the Prednisone now, and we're watching to see if I relapse at all. I have a rheumatology appointment next week, and we'll see what adjustments need to be made to the HCQ (Hydroxychloroquine). My hands and knees both hurt a lot frequently, so I hope there's some solution that will help make life a little more tolerable. I've been using a combination of Tylenol and compression gloves to keep the pain at bay, but neither are perfect.

My hair has gone curly. Not as curly as some folks, but far more curly than I'm used to. I find it terribly annoying, but there's not a lot I can do about it right now. If not for the pandemic, I'd find someone who can style my hair and get a cut that would minimize the annoyance. But as it is I have only two real options: cut it short or let it grow. At this point I'm going to let it grow a bit and see if it starts to behave. If not, I may go ahead and chop it.

Still no issues with the diabetes. My blood sugar levels are extremely stable and normal. It's actually kind of surreal in some ways. I got used to worrying about making sure I took insulin, now I'm still testing my levels but not jamming a needle in my stomach before each meal.

My hot flashes are still an issue, but I read a study that said the scent of lavender actually helps reduce the intensity of hot flashes. So I ordered some lavender shower bombs and when they arrived left them next to my computer chair, filling the air with lavender scent. I don't know if it was the placebo effect, but my hot flashes that night were both less intense and far fewer in number. If my house smells like lavender for the next few years, you know why.

My biggest discomfort at the moment is getting up from my chair or the couch. Both are just a little too low, and my knees hurt fiercely when I stand. I'm looking into options for raising the chair a few inches (it's an Ikea Poang Chair). I could probably easily raise the couch with some store-bought risers, as well. It's just a matter of getting the risers for the couch and figuring out how to get or make risers for the chair.

I've been doing very well with my short daily exercise session on the recumbent bike. I've gotten up to 15 minutes a day. I'm not allowing myself to push it too much, with my daily hard goal set at 5 minutes and my hopeful goal at 15. I've also told myself that I can take a day off each week if needed. So far, keeping the goals easy has helped me reach the higher goals.

Inkwell is healthy again, and is restless and wants to play or cuddle all the time. I indulge him as much as I'm able.

Hubby-Eric is still settling into his new teaching job, but it appears online teaching really fits him. He spends a LOT of time doing research and prepping, and I can listen to his classes sometimes (he still has a classroom teacher voice that carries throughout the house). I have heard him calling students individually and he has conferences with fellow teachers on a regular basis. Assuming a child is suited to online learning, it appears this company is a pretty good outfit to be taught by. I know Eric is putting in as much work as he did when he had a physical classroom, and seems as interested and concerned about his students around the state as he was with his local students. If only we could get faster internet out here, it would be perfect.

So I am going to go and count my blessings again. And send good vibes and thanks to everyone who has helped me the past nine months of this nightmarish year.

Thursday, September 24, 2020

Kidney Saga part 121

Every day a little stronger.

It gets a little easier to go up and down the stairs each day. The exercise bike feels less of a strain each day. I can get up out of my chair a little easier each day.

Oh, the evenings are difficult, as the exhaustion and pain take their toll. But I can feel the improvement each day in the mornings.

The diabetes seems to be gone. Going off the insulin didn't change my blood sugar test results. I'm still on the long-lasting insulin and will still need to test for a few more weeks, but the results have been spectacularly good so far. I even allowed myself to have a cream soda the other day to celebrate.

My biggest problem right now is the lupus arthritis pain. Most of the pain is in my hands, but I also have some in my knees and ankles. The compression gloves I ordered to help with the pain in my hands have not arrived, and seem to be stuck in some sort of post office limbo.

I was playing with Inkwell the cat yesterday on the landing, and sat down on the floor to play a little more intensely. I wasn't able to get up from the floor directly, I had to scoot over to the stairs and use the railing to pull myself up. I was disappointed, because I'd hoped I had enough strength now... but it'll come in time, I hope.

The hot flashes continue to be annoying but not intolerable. They always strike in the evening, and have kept me awake a couple of nights. I don't know how long they will last, but they do add an interesting sensation to my already full life. Again, I think I'm getting off easy with them. I know they could be a lot worse.

The windows are open this morning, with a light breeze clearing out the stuffiness of the house. Inkwell has been jumping from window to window to sniff and listen to the outside. I'm trying my best to forget about the rest of the world for a few hours and simply enjoy being alive.

Thursday, September 17, 2020

Kidney Saga part 120

My diabetes is either gone or going away.

I talked to my doctor today about the tests I had the day after Labor Day, and the indicator for diabetes is dramatically normal. She said she's never seen someone go from where I was the last time she checked (around 8%) to where I am now (about 5%). The normal range is 4.8-5.6%, prediabetes is 5.7-6.4% and diabetes is more than 6.4%. She said most of the time she sees people drop to somewhere in the 6% range first, then drop down to normal range after a few months. But we still have to be careful. So I'm going off the fast-acting insulin as of now, but staying on the long-acting insulin for a bit longer. I will need to continue to do blood tests twice a day and watch carefully for either high or low blood sugar. I'm to report any oddness, and take insulin if needed. If everything stays happy, I'll check back in a couple of weeks to determine if I can go off the long-acting insulin.

That translates to three less needles a day, but the most annoying bits (the finger prick tests) are still necessary. Oh well. I guess you can't win 'em all.

Still, I'm delighted. Even though I was told there was a good chance the diabetes would go away once I was off or mostly off the Prednisone, I was prepared to live with it for the rest of my life. If I can keep my weight down, there's a chance I'll never have to deal with it again. I have a serious motivation to avoid it in the future now that I've lived with it for several months. On the other hand, I'm no longer frightened by it.

My dietary restrictions are a bit less onerous now. I don't have to count carbs, though I'll probably try to stay within the guidelines. I still have to avoid sodium and phosphates, and keep a close eye on how much potassium I get (although it's less of a concern due to the way water pills work). I will be able to eat when I want to instead of having to keep a careful schedule due to the insulin shots, which will be nice. Not dramatically different, but nice.

I also talked with the nephrologist via video on Monday. He didn't change any of my medications, which surprised me a little. His main concern was making sure I'm tapering off the Prednisone correctly (I am) and that the Hydroxychloroquine isn't having any massive side effects (it isn't). My blood tests are showing continued improvement, in line with the timeline from my chemo treatment. He wants to see me again after I'm off the Prednisone for awhile to make sure I don't regress. In short, all is well on the kidney front.

My hands continue to hurt, usually worse right after I wake up in the morning and late in the evening. I've ordered some compression gloves that are supposed to help with arthritis pain, so should (in theory) help me. In addition to hand pain, I feel minor pains in other joints, particularly my knees.

In fact, it has been hard to get out of my chair lately. I keep wishing for a new chair, but the downsides are a pain. I would want one that has a higher seat so it's easier to get out of it, but I still need to be able to elevate my feet. The sheer logistics of finding the right chair at the moment would be difficult. And then I'd have to get it upstairs and in my room. So I'm just trying to deal with the pain and make sure I'm careful about getting up.

To combat the pain, I've been exercising. My sister brought a recumbent exercise bike she's stopped using, and I've managed to get at least five minutes on it every day since she visited on Labor Day. Between it and going up and down the stairs for every meal, I'm very tired. But each day it all gets a little easier and I feel a little less exhausted, so I'm building up my energy again. It feels good when I think about being able to do normal things without collapsing. Movement is medicine, and one with only a few side effects.

The other new exciting medical issue I'm experiencing is hot flashes. Yup. I'm that old, and going through THAT. My hot flashes tend to happen every evening. Each one lasts a few minutes, and there's usually five or six of them in a row. I think I'm getting off easy, despite the annoyance. When I told my doctor, she was a bit concerned I was going to ask for hormone treatment or something. I basically said I'm on too many medications right now as it is, and I wouldn't even DARE to add another unless the hot flashes become intolerable. Right now they are annoying - mostly because of the sweat that gets into my eyes every time I have one - but not impossible to deal with. It's just one more thing to pay attention to, though.

Inkwell got sick last Thursday, throwing up and refusing to eat. He also became lethargic, to the point where he didn't even attack my hand when I touched his belly. We took him to the vet, but his blood tests came back normal. He only had some inflammation in his intestines. So we waited it out, and he slowly got back to eating and moving and being himself. But for awhile it was scary, and I checked on him every hour or so to make sure he was still breathing.

In addition to a sick cat, the smoke from all the wildfires in three states settled in across Washington and northern Oregon, turning the sky a filthy shade of yellow and causing local agencies to discourage people from going outside. I was given strict orders by my nephrologist to stay inside, as the smoke could definitely cause me serious problems. I have no problem with those orders. I'm just glad we have an air purifier. Both the nephrologist and my regular doctor said they are waiting for air purifiers, expressing some regret that they hadn't already gotten one.

Eric has been teaching on-line, and seems to be doing fine. I haven't really bothered him much, but he has cheerful little anecdotes about his students, and it's easy to read between the lines that he likes them and is already bonding with some of them. He's had some minor successes with the technology, as well. If we only had a faster internet connection, the job would be absolutely perfect.

Wednesday, September 09, 2020

Kidney Saga part 119

I haven't updated in way too long, sorry.

I meant to write every Monday, but on the 24th I was scheduled to have a blood draw, so I figured I would wait until after that so I could report on the visit to the hospital. Well, I went to the hospital on Monday and they didn't have any orders for a blood draw. So we contacted my nephrologist - but I ended up going home without a blood draw that day. I went back on Tuesday for the draw, which went well. My Zoom appointment with my nephrologist was scheduled for Wednesday, so I figured I might as well wait until after that appointment to write an update. Right?

I got a call Wednesday morning from his office - he was at the hospital taking care of an emergency, so he cancelled all his appointments for the remainder of the week. So I didn't have my visit. Which was a little worrisome as I expected a medication adjustment. Oddly, the office didn't reschedule - possibly because the emergency threw his entire schedule into chaos. I kept expecting a reschedule, and putting off writing an update until I had an idea what was happening... and so another week passed.

In the meantime, the local clinic called about my diabetes and scheduled an eye exam and blood tests for the Tuesday after Labor Day. So. I figured I would wait until I'd done that before writing. Hubby-Eric drove me to the appointment yesterday and then went off to go shopping while I went in and got my eyes checked and some blood taken. I'll have the results by early next week. The blood test might tell the doctors if I still have the steroid-induced diabetes. If I do still have it, it's very much in control, based on my blood sugar tests. I got out of the appointment only a few minutes before Eric got back to the clinic from the store, so our timing was nearly perfect. It was also a beautiful day out, so waiting outside the clinic for less than five minutes was very pleasant.

So, let's see... the HCQ (Hydroxychloroquine) continues to have annoying side effects. Whenever I stand up, I have to stand still for a moment to let myself balance or else I get dizzy. There is almost always a bit of nausea, but I'm getting used to it to the point that it barely bothers me unless I start to think about it. The no-need-for-laxative side effect is also persistent and disturbing. The pain in my hands continues, and when it gets intolerable I take some painkiller for it. I haven't seen any improvement. I was warned that the medication might not have an impact right away, if ever. But it supposedly will prevent the lupus from getting worse.

I'm down to an incredibly low dose of Prednisone, and most of its side effects are gone. No more nightmares and memory dumps, and my moonface is nearly gone. I still have a lot of extra hair, but that apparently tends to stick around for a bit. While the facial hair is distressing, the worst is the hair on my arms and shoulders because it's just light enough to move in any sort of wind or breeze and freaks me out because it feels like a spider or insect brushing against me.

My parents and younger sister visited on Labor Day. My mom brought me an awesome cat house, which I suspect I will enjoy far more than Inkwell will. My sister brought me an exercise bike that can be folded up nicely. It's recumbent and low impact, so I should be able to use it for a few minutes each day and start building up my strength again. I've already used it for very short sessions two days in a row, and it wore me out completely. Still, the point is to get to the point where I can go for longer and not be exhausted when I finish, so I hope I can keep at it.

My sister also helped me move a piece of furniture that I needed to move in order to take the next step in my recovery. I wanted to put my medicine table downstairs instead of in the bedroom, but there was a free-standing book rack in the way. My sister moved the book rack, and then I used all my energy and then some to get my table downstairs. This basically means hubby-Eric no longer has to haul my meals upstairs, as I'll be going downstairs to eat. It also means I will be getting more exercise because I will have to go up and down the stairs several times a day. Going down isn't too bad, but going up can be a challenge if I'm at all tired. Again, the point is to get stronger, so the move is a good thing.

Over the past weeks I also watched as my namesake hurricane moved in and caused death and damage as one of the biggest hurricanes to make landfall in recorded history. I've been following news about the Post Office being gutted. And I've followed the news of protests and shootings with dismay. This hasn't been a good year for most of the world.

Late in the night on September 1st, Eric and I got alerts on our phones to evacuate immediately due to a wildfire. Fortunately, it was a mistake. The fire was more than 40 miles away. We got more alerts later on explaining that it was a goof. Each one woke us up. The fires have been pretty bad in the state, and Labor Day was actually really bad for this area due to heavy smoke and high winds.

This past Friday our AC went out. As the temperatures were in the 90F range over the weekend, it wasn't pleasant. We decided to wait until Tuesday to get it fixed rather than pay for emergency service. There were moments I regretted that decision, but in the end we survived. Inkwell melted all over the house, and I sweated more than I have in some time, but we got through it. On Tuesday afternoon the tech came and fixed it very quickly. I opened some windows while the AC was out, but the smoke made it impossible to leave them open too long.

On Sunday, hubby-Eric tried a new recipe for lasagna, and it was excellent. It was very nice to be able to eat lasagna again - a nice low sodium version. Even better, there were several servings left over for lunches. Yum!

With Eric's permission, I also joined two Kickstarters over the past couple of weeks. The first is for Nani, a graphic novel inspired by African mythology. I pledged at the level to get both volumes digitally. To my delight, it funded very quickly and is already well on the way to its second stretch goal. I also backed Girl Genius - Adventures In Castle Heterodyne, a new video game based on the Girl Genius series. While it hasn't fully funded yet, I'll be surprised if it doesn't reach the goal.

Today is Eric's first teaching day on his new job. There have been some technical glitches along the way, but it sounds like he's ready. Ask him how it all went later in the day today, or check his Facebook page to see if he talks about it.

A fly got into the house, and Inkwell the magical cat has been delightedly chasing it around. From my chair I've watched him leap into the air many times after it. He also chitters at it, so I know when it comes into my room. He loves his new sky raisin toy, and seems extremely happy to have it. I wish he could catch it because it drives me nuts when it flies near me. Inkwell was also shocked by my family's visit, and has carefully examined his new cat house. He's been great entertainment for me.

Inkwell being cute.

My time continues to mostly be reading, listening to podcasts and e-books, and playing on DC Universe Online. Two new podcasts I've started listening to are the Archie McPhee podcast, Less Talk, More Monkey, and the Pat Cashman podcast Almost Live! Still Alive. The Archie McPhee podcast is surprisingly entertaining for being basically adverts for their products - mixed in with Seattle lore. And any fan of Almost Live really needs to listen to Pat Cashman's limited series as he goes back and interviews the folks who brought the show to us.

So, I guess to sum up, life is going as well as can be expected in this year of pandemic. I'm certainly grateful that I have a future to look forward to.

Monday, August 17, 2020

Kidney Saga part 118

I wrote a quick update this past Thursday on taking HCQ for my lupus. I noted the persistent low-grade nausea, the dizziness and the exhaustion. I also mentioned a worry that my depression was coming back.

Well, I seem to have gotten through the depression. I suspect I just got a little unbalanced, and it came back - as it tends to do - for a visit. I felt pretty solid over the weekend, and overall feel much better mentally now.

The dizziness, nausea and exhaustion haven't gone away. The dizziness has been fairly bad at times, leading me to wonder if I shouldn't start using the walker again. I don't want to, but I also don't want to fall.

Other side-effects are also apparent, including the "don't need the laxative any more" one that I'd rather not talk about much, but I find incredibly disturbing at times. I really don't recommend taking this stuff if you don't have to. It is not quite as bad as the prednisone, but it definitely is unpleasant.

Speaking of prednisone, the step down of dosage has made a difference. The memory dumps have almost entirely stopped. I did have a brutal memory/dream experience during a nap that surprised me (it involved a road I thought I knew with rock faces I'd never seen/noticed before and was really haunting and terrible), but it kind of felt like a last gasp of the last grasp the stuff has on me. I've also noticed a lack of mood swings in the last month or so, which is nice. Prednisone is a wonderfully useful drug that I hope to never ever have to take again.

Hubby-Eric has been working regularly, now. I have started to feed Inkwell the cat during some of his feeding times. Getting down the stairs is fine - getting up them again can be difficult at times. But overall I'm healthy enough to handle it.

I made my own breakfast the other morning, and nearly passed out as I finished. I am still very weak. Standing in the kitchen stirring a pot of oatmeal took more out of me than I like to admit. But it turned out good, although I had to rest on the couch for awhile before I could get back up the stairs.

Inkwell has been goofy. He has gotten brave enough to examine my lunches again, and has no compunction about telling me how awful my food choices are when he smells my veggie dish. He seems to know I'm healthier and has been trying to get me to chase him and play, which I try to do when I'm strong enough. He also insists on sleeping in my chair and refusing to move when I come into my room. I have to shoo him off, which he does not appreciate - although sometimes he decides to occupy my lap once I've sat down.

I still spend far too much time asleep. When I'm not asleep I'm often playing my video game and listening to podcasts. I'm entirely caught up on all the podcasts I got behind on, and have been looking for new ones that aren't too annoying. Unfortunately, I get really picky about what I like. There are some that are good but have really annoying ads, while others are just too long for my tastes (I prefer 15-45 minutes).

Overall, I'm still getting better, slowly but certainly. I guess that's all I can ask for now.

Monday, August 10, 2020

Kidney Saga part 117

My hands hurt. A lot.

I'm keeping the worst of it at bay with a bit of Tylenol in the morning and a bit in the evening. I'm also doing exercises meant to help with arthritis. But the pain is real, and really annoying. Still, it could be worse. I could be on dialysis.

I'm now a week into taking hydroxychloroquine (HCQ) and haven't had any major side effects yet. I have low-grade nausea at times and some dizziness, but it's mostly tolerable. There have been times lasting up to an hour or so where I felt on the edge of throwing up, but again, tolerable. I did not develop the terrible rashes that the doctor warned me to watch for, so I guess that's good news. I will need to get an eye exam as soon as it's feasible and I can't go out in the sun, but it looks like I will be fine for now (knock wood).

Another side effect is that I don't have to take Miralax any more. It would be overkill. That's all that needs to be said on that subject.

My face is DEFINITELY getting back to normal. I can feel the bloating going away and it feels absolutely wonderful. When I look in the mirror I'm seeing myself again. Physically it's really not that big a deal, but psychologically it's HUGE. I still find it strange how awful I felt about the "moon face" when I had so many other problems. "You have heart failure." "Yea, but LOOK AT MY FACE! AHHHH!"

I went to the dentist last Tuesday, and got the complete cleaning that we didn't have time for during my first visit. The hygienist did a fantastic job, and got rid of some build-up from the hospital that had been driving me crazy since January. I was doing great at keeping my teeth feeling fine - right until my first hospital visit, then a few days with no access to a toothbrush and strange medications meant my teeth developed some yuck on them. Now that it's gone, I feel much better.

My hair is growing out slowly. I could be imagining things, but it seems a bit darker (where it's not grey). It also feels much more thin and crinkly than it used to feel. Hubby-Eric wants me to give him another haircut soon, but my hair is growing slowly enough I'm going to wait.

I've been paying close attention to the world outside. There's far too much going on in the world.

The explosion in Beirut was another terrifying reminder that regulations are written in blood. That stuff should never have been stored where it was stored. That's all I should say about this, except that it made my heart ache and again made me angry at my own inability to help.

Honestly, my helplessness is another source of stress. I feel like everything is falling apart around me, but I have to stay sheltered. I think other folks are feeling it as well, as indicated by our neighbors who had some sort of party that was still going at 4 am on Sunday.

Eric is settling into his new job, which seems to suit him perfectly. Hopefully it will continue to suit him once he has students - but I don't see an issue as every student of his I've ever talked to said he's a great teacher who conveys concepts in a way that people can easily grasp. His weakness as a teacher has always been classroom management, and with a job like this he isn't managing a classroom. His employers are also encouraging him to exercise, so he's started his morning walks again. I hope to be able to do some short walks, preferably before the sun comes up (as I'm not supposed to be out in sunlight), in the near future. There's a new pokestop nearby that I would like to visit.

With my strength returning, I've been able to play with Inkwell some. Not as much as I would like, but the cat sure seems to appreciate what time I can give him. He's gotten a bit wild at times, but overall he seems to understand when I need to stop. He continues to occupy my chair, and I've come up with a variety of ways to get him out of it. Last night I sat nearby and petted him until he gave up and left. It was amusing.

I'm still mostly playing DC Universe Online and reading to pass the time. I haven't really been following any sports. I think opening any professional sports season is currently irresponsible, even if it results in amazing videos like the one I'm posting below. With the pandemic still in full force, opening anything is irresponsible.

Well, I'm going to attempt to post this with the new Blogger interface, which they switched me over to a few days ago. I'm not sure how well it will work (spoiler: it hates me). All I'm certain of is that I won't like it because I don't like change - particularly change for the sake of change. A recent update to Thunderbird (my email client) changed all the icons into horrible ugly outline things and I haven't yet figured out a way to change them back. Not a fan. If it isn't broken, don't "fix" it.

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