Sunday, November 29, 2020

Kidney Saga part 126

I really am a lucky person.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life is pretty good despite it all.

Monday, November 16, 2020

Kidney Saga part 125

I meant to write sooner, but things kept happening in real life.

Let's see... late October my wonderful sister bought me a Christmas/Birthday present: a new lift chair! It's a recliner, although it doesn't go fully flat. Inkwell the cat has found that he can rest on my lower legs while I'm playing on my computer, and likes to stretch out and sleep on me when I'm napping in the chair. Getting up has become much easier. I no longer feel the agony in my knees as I stand after a long writing/gaming session. This has made it easier in general to move around, which has made my life in general better.

The hospital system updated its policy on lab test results. Instead of waiting for a doctor to screen the results, they are immediately released to the electronic chart, accessible via a website. So when I got labs done at 11am, the results were already up by 1pm that same afternoon. Reading through them without a doctor's advice is a bit sketchy, but I knew enough of which items to look out for, so I was able to tell before my doctor appointment that I was still heading in the right direction. Some of the numbers that used to be way out of whack are now almost normal or within normal range. Don't get me wrong, my estimated GFR still puts me in Stage 3 kidney disease, but even that has improved dramatically since the beginning of this year.

A week after the tests, I saw my kidney doctor via Zoom. He confirmed my analysis, telling me I was definitely showing improvement. Except for the pain in my joints, I'm doing very well. Unfortunately, the pain in my joints is a classic lupus symptom. So he added a new medication that has been shown in clinical trials to have a good effect on people who took the treatment route I did - including the cytoxin chemo therapy. It's still too soon to see if it's having the desired effect, but I can say the medicine makes me miserable for about an hour or so after I've taken it. Not pain, just discomfort and stomach ache.

I've continued to manage a few minutes on the exercise bike most days. I have missed a few days due to pain or other things happening (when I installed my new light switch, it took enough out of me that I didn't try to exercise). I still have hope that I can get up to 30 minutes a day at least five days a week by the end of 2020, although I'm not going to push it when it comes down to it. I only do as much as I can tolerate without real pain.

In my tech world, some big things happened that helped to delay me writing this. My storage hard drive on my computer died. As I was only running my operating system and a single game from the boot drive, this meant that I lost EVERYTHING else. Fortunately, I had a back-up. Unfortunately, it was four months old. D'oh! So I lost four months of photos, writing, and other projects. Which is painful, but not so horrible that I feel like I need to go to a data retrieval company to try to recover the stuff on the drive. Instead, I purchased a new drive, installed it, restored the back-up to it, and am getting on with life as best I can. I now have a nightly back-up to an external drive *and* a cloud back-up going. I hope to not lose everything again.

In addition to the lift chair, I installed a nice "smart switch" for my room. The light levels in my room change frequently during the day depending on the location of the sun and whether or not we have weather outside. It's not a big thing to get up and turn the light on or off, but I often have severe feline paralysis when I want to change the light. Also, I have to wait for the lift chair to push me up. So a smart switch, which allows me to turn the light on or off from my phone, seemed like an interesting project. And so it was. I've done a little bit of DIY wiring before, and this was not a difficult thing to install. The worst part about it is that my hands, wrists and arms are still very weak - even pushing the wiring back into the box was harder than it should have been. I managed it anyway, which made me extremely happy on multiple levels. Being able to accomplish a small home improvement task is amazingly gratifying.

Installing the smart switch led to me installing some more apps on my cell phone, including figuring out how to install a new launcher on Android. I wanted to customize the icon for my light switch, and that's easiest with a launcher. Which is something I hadn't explored yet. But it will probably keep me fascinated for a bit, as it has a lot of options that techie-Laura loves. Ah, more toys to fool around with!

For once I'm also looking forward to my birthday, January 20th. Inauguration Day. Twice in my life, my birthday has been devastating. Hopefully this next one will be as wonderful as the one in 2009, which has probably been the best inauguration day b-day I've had. We just have to get through the two months leading up to it. Fingers crossed it won't be too bad.

No promises on my next update, but I'll try to keep updating regularly here as well as on Facebook.

Thursday, November 05, 2020

Newbery Winners: The Trumpeter of Krakow

Hi, Eric here again with one of my rare posts here. Yes, I'm still trying to read all of the Newbery Medal winners in order, and with The Trumpeter of Krakow by Eric P. Kelly, we wrap up the 1920s with an exciting adventure of intrigue and mystery and all that stuff that makes for a pretty good story. Kelly had spent time in Poland not long after it was established following the Great War, and grew to love and appreciate the country and its people, which really shows in the book. He really brings medieval Krakow to life. Which is good, because the book's protagonist, Joseph Charnetski, has to learn about it, as his family have had to flee their village. His father hopes to stay with a cousin in the city, but he has been murdered and his estate seized, so the Chartenskis have no friends or resources to help them. But they save the life of a kindly alchemist who offers to help them, and finds not only a place to live, but also work, as the trumpeter who plays "the broken hymn", the Heynal, at the Church of Our Lady St. Mary every hour. While the job is primarily his father's, Joseph helps out and learns the Heynal himself, which becomes useful when those who are seeking out the Charnutski family and the incredible secret they are hiding come to Krakow. Through a secret code in his playing of the Heynal, Joseph is able to alert his friend, the alchemist's niece, who raises the alarm and helps save the family. It is not enough to stop the Great Fire of Krakow, but all ends up working out well in the end. It's an exciting, well-paced historical novel, and worth the effort to track it down. Yes, thanks to the COVID-19 pandemic, getting a copy of the book to read was a bit of an adventure. Our local library was completely shut down, so I couldn't borrow their copy. I ordered an inexpensive used copy online, but the sent the wrong book! No problem, it was a book I wonted to read anyway, and they refunded my money, but I was still without the book to read. But by this time, the library was open again, at least for no-contact deliveries of reserved books, so I finally got the chance to read it. But interlibrary loan is still curtailed, and since they don't have the 1930 winner in their system, I may have to venture into the used book market again. Ah, but that will just have to wait for my next entry on this blog, most likely.

Wednesday, October 28, 2020


Thursday, October 22, 2020

Kidney Saga part 124

Movement is medicine.

My cardiologist was very happy to learn that I've got an exercise bike and have been using it almost every day. I also mentioned my goal to start walking daily to the nearest Pokestop - and she admitted she hadn't realized Pokemon Go encourages exercise.

Well, last Friday was the first time I missed a day of exercise since I got the bike, mostly due to pain. The pain - in turn - causes fatigue. And sometimes it's just too much to overcome. Mostly I've been able to carry on despite the hurt and exhaustion, but some days you just have to stop and rest. Last Friday was one of those days for me.

Fortunately, I was able to get back in the saddle and ride again - and have kept up at least five minutes a day since then.

I went to the cardiologist on Monday with my new "2020 Scariest Costume Ever" mask. I was mildly disappointed that no one commented on it, but by now lots of people have seen lots of masks, so I shouldn't be surprised. I suspect the etiquette of mask compliments is still not set.

The results of my echocardiogram were in, and are very good. In January when I first went into the hospital my "ejection fraction" was under 50%. Normal range is 50 to 70%. My echo showed I am now at a solid and healthy 58%. It's not enough to dump my medications, but as far as my heart is concerned I'm out of the woods. Whew!

The result is that I don't need to see the cardiologist until January unless I relapse. In the meantime, I have strict instructions to continue avoiding salt, to continue exercising, and to continue restricting my liquid intake. I also get to taper off the diuretic and see if I develop edema again.

Because the appointment was in Richland, about 40 miles away, hubby-Eric drove me. But as we came back I commented that my vision is fine again and I feel fairly strong, so maybe my next medical visit - to get x-rays - I should try to do alone. Eric was reluctant, but agreed if I thought I could do it I should give it a try.

I didn't have the energy on Tuesday, but on Wednesday I headed out to the Prosser hospital - about 15 miles - alone. It was odd driving again. I've driven exactly once in 2020 - to the dentist less than a mile from home. I made it to the hospital just fine, and went in with my newest mask. I was shepherded into the x-ray room where a duo of goofy techs helped me with my "photoshoot". I got x-rays of both feet, both knees and both hands. I also got asked how to pronounce my last name, to which I first replied "very carefully," which got a good laugh.

The drive home was slightly less fun. I felt a wave of exhaustion hit about halfway back and considered pulling over. In the end, I decided it would take as much effort to get off the freeway and find a safe place to stop as it would to continue all the way home. So I continued, and made it home safely.

I got the results back from the x-rays today - everything is within normal parameters and no immediate action needs to be taken. The only result that showed up in my online chart so far was for my left foot, and noted the heel spur that has been a slight bother for many years now.

My next appointment will be virtual again, yay! I need to visit Prosser hospital before then for a blood draw. All the standard tests need to be done. Hopefully I'll have made even more progress since my last tests and maybe, if I'm extremely lucky, I'll hear that my kidneys are healthy? Hey, a girl can dream!

Sadly, I know the lupus is here to stay. The pain is mostly in my hands and knees. My hands hurt all the time, waking or sleeping. It hasn't woken me up, but I dream about my hands in pain. The worst pain is always just after I've woken up, since they've been still for so long. Typing or playing the video games tends to make them hurt less - movement helps.

My knees hurt maybe three quarters of the day. The worst moments are still getting up from low chairs. My sister, being a wonderful person who loves me very much, decided to help out with that problem. She's ordered me a lift recliner which should arrive in the next few days. It will effectively remove the worst of the "getting up" pain if it works as advertised.

I've been keeping my kidney wish list up-to-date although I'm no longer in any desperate need of anything on the list. It's so nice to be able to say that!

I am continuing to use the lavender shower bombs as aromatherapy, and they continue to apparently work to reduce the intensity of my hot flashes.

The weather has finally turned enough that we switched from AC to heat. Inkwell has been extremely cuddly recently, clearly seeking out the human cat bed for my warmth. I mostly don't mind, although he doesn't really take a hint when I'm trying to play my game or type. I end up with cat butt in my face entirely too often.

I listen to Eric teaching each day. His teacher voice really carries - I only hope it gets through to his students. He's still learning how to be an effective online teacher, but he seems to be doing great.

I'll try to continue to update weekly as I move into a new phase of sickness. Living with lupus is going to be strange, I guess. Hopefully I can stay on track.

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.