Friday, May 29, 2020

Kidney Saga part 105

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

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

Wow.

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

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

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

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

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

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

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

Thursday, May 28, 2020

Kidney Saga part 104

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

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

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

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

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

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

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

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

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

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

Tuesday, May 26, 2020

Kidney Saga part 103

The back pain is killing me.

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

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

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

Sunday, May 24, 2020

Kidney Saga part 102

Friday and Saturday were marked by pain.

The back pain came back with a vengeance, and it's still here. I'm barely able to walk right now. Fortunately, I don't have to go anywhere for awhile.

Eric went shopping on Friday and brought back a gift for me. The first I knew of it was when Inkwell ran up the stairs and looked back down with genuine concern and a little of his scaredy cat routine. Since the vacuum wasn't out, I couldn't figure out what he was upset about.


Then Eric brought the balloon into my room, and Inkwell freaked and ran to hide under a bed. It's an Aquaman balloon that he just happened to find. I was delighted, and put it on my walker for awhile. Inkwell was not pleased with it. He was, in fact, terrified at first. After some time, curiosity overcame fear, and he came into my room to look at it, but cautiously.


He hid under the bed again after viewing it for a bit. And stayed there for about an hour until he decided it wasn't really a threat. I brought the balloon down for him to look at, and he attempted to eat the ribbon, so I guess he got over his terror.

In the meantime, I can't tell if I'm getting better or not because the back pain is so bad I can't move properly. I don't have another appointment or blood draw until June, so I'm flying blind for a week. I don't feel particularly horrible except the back pain, so I hope all is well.

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

Friday, May 22, 2020

Kidney Saga part 101

Two steps forward, one step back.

Yesterday was awful. I was sick the entire day, and slept as much as possible because I felt so bad. My back was screaming in pain again, after almost feeling normal for a few days. My stomach kept complaining, and food felt like an intrusion.

I was grumpy and mean and probably abused poor Eric and Inkwell. I tried really hard to not, but I'm sure I was awful to everyone who tried to talk to me.

Thanks to the back pain, I had to use the walker to get around. I could barely stand up. It felt like a serious setback since I've been able to move around without it for a few days.

More scary, my right hand, where the nurse hit a nerve, sometimes started to twinge painfully if I moved my hand in just the wrong way. It was rare, but it was nasty. Also, the spot where they finally got the IV in is now bruised. Now there are three visible bruises on my arms from IV and blood draws.

In short, yesterday sucked.

That said, I have a comfortable home, a husband and cat who are taking care of me, enough food to survive, a medical team that's trying their best to keep me alive and in general I'm very blessed. So I'm going to try to not keep yesterday in my brain and just try to be a little less grumpy.


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

Thursday, May 21, 2020

Kidney Saga part 100

Ouch.

Ouch ouch ouch ouch ouch. That was yesterday's infusion.

Four tries to get the IV in, and the second one, in my right hand, hit a nerve. Not just hit a nerve, hit it HARD and I actually started sobbing in pain because it hurt so much. It took ten minutes before the direct pain stopped, then another half-hour or so before it stopped hurting whenever I moved my hand.

Crying while wearing a face mask is not fun.


And then there is the nausea. Although I was given an anti-nausea med, the nausea still hit and by the time the Cytoxan was done I just wanted to throw up a few times and go to bed. As I was still a 45-minute drive away from home, I ended up sitting in the passenger seat wishing I was dead all the way home.

It was not a pleasant experience. The whole thing was, in fact, an ordeal. I got through it, but it sort of made me feel like my anxiety was justified. So I'm already not looking forward to the next infusion.

Other than the infusion, my day was marked by general discomfort.

In the shower I noticed how thin my hair is getting. I'm almost certain it won't all fall out, but I used to have very thick hair that almost every hairdresser would comment on. It's now thinned a lot and feels like straw. The thinning is not a bad problem to have during a pandemic when I can't visit a hairdresser at all.

My skin continues to contract to fit my body. It feels very odd at times, like someone is pinching me lightly. The lotion with Retinol helps a lot, but it still feels weird.

My legs and arms are skinny to the point of being flesh wrapped around bone, but my face looks like a balloon and my mid-section still has quite a bit of weight on it. I look in the mirror and feel like I'm a caricature of a human. My arms and legs are extremely sensitive at times, hurting just from clothing rubbing against them.

This morning I woke about 1am with more nausea and ended up getting up because sleeping wasn't an option. I spent a few hours piddling around on my computer before going back to bed, and this time I was able to sleep for awhile. I'm still feeling queasy, but it's not as bad now. I'm also fairly tired from the lack of good sleep. Oh, and my back hurts again. Yay.

So, a bit of a set-back in the last 24 hours. Hopefully I can get back to healthier again quickly. But if I seem a little grumpy, you know why.

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

Wednesday, May 20, 2020

Kidney Saga part 99

It's infusion day. The fifth of sixth.

I'm still feeling irrational anxiety, but hopefully I will be fine once I'm at the clinic and getting infused. I have a novella to read, and even some comics on my phone that I might be able to handle. And if all else fails, I had insomnia this morning so maybe I'll sleep through it.

I've started to toddle around the house without the walker. I'm still not going up and down the stairs much because it takes so much effort to go up, but I can walk safely without the walker a good portion of the time now. I'm not completely steady, but I'm not falling over, either. I probably should have tried to move around without it sooner, but it's nice to have the bag hanging from it that holds my stuff, and after the fainting spells I was a little leery of falling for far too long. Not that the walker helped during those incidents.

I still don't have enough strength to stand for very long, so the walker is still needed. But if the doctor is right about the potassium, I hopefully will have enough strength very soon. Of course, the infusion will throw things off, since I'm always fairly tired right after that.

My brain is getting more active and my writing is improving. It still sucks, and I hate every word I've written in the last few months, but the words are definitely beginning to hold together again, and don't feel as disconnected and wrong. It's hard to explain. I'll just say I'm feeling like I'm headed back to my groove. I'm not there yet, but I'm pointed in the right direction.

With the weather being nasty outside the last couple of days, Dr. Inkwell has been very diligent about seeking out my lap whenever he can, and meowing at me until I put my laptop aside and let him sleep on me. He spent a very long time on my lap last night while I read. His purr therapy helps, but after some time he gets heavy on my now very skinny legs. Without any water weight to cushion them, my legs feel everything that touches them.

I'll report tomorrow, probably with another selfie like my other post-infusion reports. Hopefully all will go smooth today. I can hope and wish.

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

Tuesday, May 19, 2020

Kidney Saga part 98

A very quiet Sunday was followed by a somewhat busy Monday.

I had both a blood draw and a doctor appointment yesterday, and both went well. Hubby-Eric drove me to the Prosser Hospital for the blood draw as soon as he finished teaching. It was really busy, with people all over the place. The lab was slightly backed up because of the number of patients.

I sat in the waiting room and a woman came in who clearly had never dealt with a blood draw before. She had her paperwork but didn't know what to do, so I helpfully told her she could set it on the counter and the nurse would grab it. The woman gave me a look that I interpreted as grateful, since she was masked, and then did as I suggested. She sat when the nurse told her it would be a few minutes, then the woman turned to me and said, "I'm a little nervous." I said it would be okay, and told her I'd never had a bad blood draw here. She asked if it would hurt, and I said yes, a little, as being stuck by a needle almost always hurts just a little. She asked how much blood they would take, and I held up my hands to show the usual size of the vial they get from me. I said it only takes half a minute or so.

Her eyes were anxious, but I think I helped calm her a little. I mentioned that I never actually look when they stick the needle in, but I'm fine after that. I went in first, and when I came out I showed her my bandage and said, "See, no problem." I hope she was fine. Lab tests can be scary the first time.

I was able to walk across the parking lot to the car instead of waiting for Eric to drive around a pick me up. I know I'm getting better.

While we were driving in, I also saw four large birds flying near a canal. I thought at first they were small birds close up, but then they went behind a tree that was far away. I think they might have been storks of some sort. I wish I'd been able to see them better.

After we got home and Eric got me a good lunch, I read and did some gaming while waiting for my doctor appointment. The nephrologist was a bit late to the virtual meeting, but we eventually connected. He was once again pleased that I'd sent my blood pressure and weight logs ahead of time, and he already had the blood test results from Prosser.

The doctor asked a lot of questions about my current condition, but said my tests indicated that almost everything was going in the right direction. My only problem is a lack of potassium, which is slightly amusing to me for various reasons, not the least of which is that kidney patients are supposed to avoid potassium. But my potassium levels are low enough to be a concern, and possibly the reason I'm so tired, so I'm going to pop more potassium pills. Yay.

He was also concerned that I'm still losing weight, but I mentioned I've been overweight for years and now that I'm on a restricted diet, I'm losing more than just water weight. I'm losing fat as well. In fact, I can feel the fat going away. It's scary and pleasing at the same time. I feel some days like I'm the incredible shrinking woman.

In any case, my prognosis is still positive, and there's still a decent chance of full remission after the chemo is through. At which point I will need to stay on a kidney-friendly diet, but will be allowed to have other stuff within reason. I'm far more concerned about the diabetes, which is linked to the Prednisone, which I won't be off of until the end of August at the soonest due to the need to taper carefully. There is a tiny chance the diabetes will leave with the Prednisone, but I'm not counting on it. On the other hand, with the weight loss, who knows? I can certainly hope.

Hubby-Eric and Inkwell continue to care for me the best they can. Inkwell is still demanding I put down electronics and have a lap cat certain times during the day. This is certainly a good thing. As I sat down to write this, in fact, Inkwell pushed the laptop off my lap and demanded scritches and cuddles. He took only about five minutes, but it was good purr therapy.


Inkwell was cuddly this morning.

Today is an off day, but tomorrow is the penultimate chemo infusion. I'm oddly anxious about it again, just like last time. I know I shouldn't be, but I am. I'll just have to persist and get through it.

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

Sunday, May 17, 2020

Kidney Saga part 97

My green screen is up, and I've attended my first virtual party with it.

Hubby-Eric did most of the work yesterday in putting it up while I held one end then almost collapsed from exhaustion. It looks pretty good, although I still need a cover for my chair (Eric found a sweatshirt that works ok) and a little bit of cover for a shelf behind my chair. Still, it was pretty cool to have. I'm still extremely self-conscious about the moon face, but all Eric's Oz friends at the virtual party said I look better than last time they saw me, which was about a month ago.

I felt much stronger yesterday, and was moving around much easier, but still very tired. Thanks to my efforts earlier in the day, I sort of collapsed at bedtime and slept very soundly, but only for about six hours. I went to sleep about 7pm and got up with insomnia about 1am. Not ideal, but not strange in these weird times. I ended up taking another nap after breakfast.

Tomorrow is blood draw day, and I have a virtual doctor visit as well. Beyond that, there isn't a lot to report. Dr. Inkwell continues to care for me with purr therapy. Eric continues to keep me alive. And I have started to take an interest in things I love again, including editing my Aquaman wiki, which I hadn't done for more than a year. So I know I'm getting healthier mentally as well as physically.

Let's just hope the trend continues and my kidney problems go into remission.

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

Friday, May 15, 2020

Kidney Saga part 96

I really don't have anything to report. It's been very quiet here for the last few days. Which has been extremely nice.

I've slept. I've read. I've gamed. I've written. I've played with the cat.

I haven't done a lot of "work" because I'm still very weak. Every time I try to clean up my room to put up the green screen I find myself getting a little faint and having to sit down. So that's been a bust.

I've been trying to do exercises more to build up strength. But it takes time and I'm impatient.

So. There's my update. I probably won't be posting blogs/updates unless there is actually something to report, now. Right now there's just nothing to talk about since I'm mostly just taking information in instead of doing things.

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

Wednesday, May 13, 2020

Kidney Saga part 95

My back pain is nearly gone.

The wedge pillow is working, and I only feel twinges here and there now. This has made exercising easier and life more bearable. I can tell if I stop sleeping on the pillow it'll come back, but hopefully soon even the twinges will go away.

Still suffering from exhaustion. I was hoping to get stronger as the week went on, but I do recall reading in the Cytoxan warnings that it takes a full week for the blood to start turning back to normal counts - and today is one week from the infusion. So maybe I'll get stronger from here on out.

The Retinol continues to work on my skin, which continues to heal slowly from the massive weight loss I experienced. There are two spots, one on either thigh, which tickle a bit every once in awhile. But otherwise I'm not feeling the discomfort anymore. It's very nice to be healing without minor pains.

I have a "green screen" now and plan to put it up and use it for Zoom meetings and such. I am still feeling shy due to the Prednisone moon face, but Eric claims it's starting to go away. I hope so. It feels so wrong to look in the mirror and see a Campbell's Soup Kid instead of me. And when I look at my wrists and ankles - which are about as tiny as they've been since I was in elementary school - and compare them to my face, it feels very strange. If all goes well, I will be off the Prednisone by the end of August, and that should be the end of the moon face. If I'm incredibly lucky, it'll also be the end of the diabetes, but I'm not counting on it.

My nephrologist called to ask if is fine to have another telemedicine session for our next appointment. I was delighted. Any time we don't have to drive to the Tri-Cities for an appointment is a good time. I still have to visit the Prosser hospital on Monday for the blood draw and samples, but that's trivial.

I've managed to start listening to podcasts again. My mind is no longer quite as messed up as before. Even the small reduction in the steroids seems to have had a good effect on my mental state. I can read, I can listen, I can almost play my MMO without running my characters into walls. I can catch Pokemon on my phone and I can scritch Dr. Inkwell when he jumps into my lap to give me purr therapy. Life is getting better.


This is my Pokemon Go Buddy, Storm, posing against my Aquaman wall.

Today's plan is more resting, with a bit of writing, reading and gaming on the side. If I'm feeling extremely bold, I'll start to work on putting up the green screen. It's going to take a bit of work, since I'm going to have to clean my room a little to fit it in. Too bad I couldn't afford a nice stand so I don't have to hang it on the wall. On the other hand, it'll be nice to have something on the wall behind me. The wall in front of me has a huge part of my Aquaman collection, but the wall behind me is pretty much bare.

Well, there are pixels to kill and Pokemon to catch and a cat who probably wants some attention soon, so I'm off to live my day. I hope you are enjoying yours as much as possible.

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

Tuesday, May 12, 2020

Kidney Saga part 94

I've had two wonderfully quiet days.

Sunday and Monday were both marked by exhaustion but lots of resting. I stayed offline a lot, played games, read, and was given purr therapy by Inkwell, who seems intent on keeping my treatments regular.

Inkwell got to the point where he started pushing my laptop off my lap if he wanted lap time, all while being extremely vocal about how I needed to put down the electronics and pet him. So I did. And he loved it, and I loved it.


While I'm able to move around upstairs, my strength is still taking its dear sweet time in returning. I do squats on the walker and some of the "stand up sit down" chair exercises, but I probably need more. I'm also still losing weight at a decent clip. Not all of it is water weight any more.

After reading up on diabetes and foot care, I probably need some more socks. I have just enough pairs right now, I think, adding in the ones Eric found that actually came from the hospital, but more would be nice at some point. I'm trying to be good to my feet because I know the consequences if I'm not.

I've been impressed by a couple of my games and how they are adapting to help people get through the pandemic. Pokemon Go has, as I previously mentioned, adjusted some things to allow players to stay home while still having fun. DC Universe Online has opened up episodes so even free-to-play folks can enjoy most of the game (with lots of restrictions - membership is still the way to go). I've been playing both games with great enjoyment in the last few months.

I am finally getting around to reading comic books again. I'm more than a year behind on a lot of them. I decided that, since I don't plan on "reviewing" them for the blog, I'll just put them into series order and read each series. That was a big job, but it's done and I'm reading now. I may do quick series reviews at some point, but I'm not going to push it. One reason I stopped reading is because of eye issues - those are mostly resolved now. Another health problem that seems to be going away! Yay.

My lifelines online are still Gail Simone (who has now turned into a salmon) and Sophie Fatal on Twitch. Both of them keep me in good spirits when I read/watch and both of them are vital to my world. Add in all the other folks who are helping me, and my life is pretty darn good despite the problems.

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

Monday, May 11, 2020

No update today

Yesterday was lovely and boring, so I'm not going to attempt a write-up. Here's a photo of Inkwell to tide you over.

Sunday, May 10, 2020

Kidney Saga part 93

I was wonderfully distracted yesterday by Pokemon Go's "community day" event which allowed me to participate entirely indoors.

It's silly, but having a minor gaming goal was nice. Gotta catch 'em all, and all that. Instead of having people out walking, the game gave sets of challenges. If you completed the challenges, you got a chance at the special Pokemon of the day. I did a lot of challenges, all of which were possible to complete from inside the house. It kept my mind off everything outside for a good long time.

As for my health, I was still bone-tired yesterday. I am healing, but so slowly I sometimes want to scream in frustration. I overdid food yesterday, eating way too much and causing some minor hyperglycemia, which I'm sure contributed to my exhaustion. Breakfast was an excellent baked pancake while Eric tried a new recipe for low-carb tacos for dinner - and I ate one too many. I really need to be more careful. Sadly, I'm also craving a chocolate shake. I did a search on low-carb shakes and pretty much all the recipes call for fake sugar, bleh. I really need to find one that actually tastes sweet to me or doesn't have a hideous aftertaste.

Inkwell continued his lap therapy, jumping up on me and insisting I stop all computing activities while he purred mightily into my stomach. I'm always amused when he slaps away the phone. He didn't slap away my comic books, though, and let me read quietly while he purred. His sessions are short, usually less than 10 minutes tops, but very comforting.

I did end up taking a nap yesterday, but also slept very well last night despite a couple of interruptions. Inkwell woke me this morning just before my alarm (which is set to remind me to weigh myself). It's another bright and sunny day here, with temperatures supposed to reach 80F and possible thunderstorms later in the day. I find it amazingly surreal to look at friends' Facebook posts showing snow where they are. The world is truly upside-down.

Today's plans include more reading, writing, and gaming. Possibly more purr therapy. Hopefully it will be a restful day.

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

Saturday, May 09, 2020

Kidney Saga part 92

Thinking I was stronger than I am, yesterday morning I headed downstairs to get myself some water and an insulin pen. It wasn't until I was almost at the top of the stairs again that I realized how much effort it was taking. The rest of the day kind of followed suit. I was exhausted.

Emotionally I was feeling wrecked, and it didn't improve much throughout the day. I tried. I stayed away from the news and played my game and read and just tried to not let "it" get to me. But the day was overall unhappy.

Physically I was mostly fine, except for being bone-tired. I ended up taking a long nap before lunch, which helped a little, but I was still worn out most of the day. Of course, this morning I had insomnia - which nearly always happens if I nap during the day.

Inkwell was very clingy yesterday, insisting on lap time without the computer and slapping my hand if I reached for the computer mouse or my phone. He also insisted on scritches and petting. Silly cat. He never stayed too long in my lap, but he made many visits.

I guess I'm frustrated with being so weak. I'm exercising, trying to build up strength, but I just get more tired. I want to be able to cook for myself. I want to bake something, even if I can't eat it. I want to be able to stand up in the kitchen for more than five minutes before feeling like I'm going to collapse. I want to be able to climb the stairs without having to stop and rest.

I know I'm healing. I just wish I could heal a little faster.

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

Friday, May 08, 2020

Kidney Saga part 91

I had quite a bit of nausea yesterday, but otherwise felt pretty strong and healthy.

It's clearly a crap-shoot on what I'm going to get the day after an infusion. Although the last two times it's been nausea and not a lot else. I'm strong enough that I'm almost never leaning on my walker, just pushing it along in front of me and keeping it there in case I have another fainting spell or something. And I'm almost strong enough to pull myself up from a chair instead of push myself up. There's a big difference - one means I can get up from the floor myself while the other means I'm still helpless if I fall.

My skin is feeling marvelous from using the retinol cream. The horrible crawling discomfort is almost completely gone, and the papery bits are starting to heal nicely. It feels so good to not hurt that way.

I spent most of yesterday playing around on my computer and reading. So, there's not a lot to report today. So I'll just blog some photos of Inkwell that I put up on Facebook.


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

Thursday, May 07, 2020

Kidney Saga part 90

For some unknown reason I was really freaked out about yesterday's infusion.

I mean, I was genuinely scared. I don't know why. I had gone through it two times already and I knew it wouldn't be difficult. But yesterday morning I was just dreading it. I didn't want to deal with it at all. I spent the morning trying to forget it was going to happen, and failing.

The drive to the clinic was not pleasant. There was much more traffic than we've seen previously, and people were driving very fast. There was also a massive wind storm, and dust was in the air. Add in that I felt we were a little late (we weren't, I'm just paranoid that way) and I got unreasonably upset on the drive. I went into the clinic feeling like garbage.

The rheumatologist didn't change any of my meds, although she was about to add a preventative until I noted that I was already taking one. When I described the "Satan Spit" she laughed. She told me my kidneys are responding very well to the Cytoxan, so we should be done when I finish the next two infusions. She also cautioned me about the Prednisone - but I've already looked into how difficult it is to taper off the stuff so I will follow instructions. I get to go down 10mg every month until I'm off it. The infusion clinic is part of the rheumatologist's office, so after the appointment she escorted me into the infusion room.

I ended up in the same chair in the infusion room that I've taken the previous two times I went. I learned that they actually removed a bunch of chairs to enable "social distancing". That the chair removal also makes it easier for the nurses to reach patients' arms was an unexpected bonus, apparently. There was a trainee watching me get set up for infusion. She apparently was visiting from another clinic in order to learn how to use the pump that pushes the infusions into veins.

The nurse I got this time was extremely competent. She was one of those folks that the instant you saw her you knew you were in good hands and that everything would be smooth. As I was feeling crappy, it was a huge relief. And, indeed, she managed to insert the needle almost painlessly on the first try, then she knew how to speed up the saline enough to get us out of there in good time.


The nurse had a very cool sleeve tattoo on her right arm, which I complimented her on. She said as a child she told her mom that as soon as she was of legal age she was going to get a bunch of tattoos, but then waited until she was 25 and knew her own mind better. We joked about how tired I was of needles and how many needles are involved in tattoos. I admitted I'm much more a temporary tattoo kind of person, because I cannot make up my mind. I still really want to get a Prinker so I can have constant different tattoos, but it's way out of my price range, sadly.

The infusion went fairly quickly, and we headed home. Poor Eric had to wait in the car, as they aren't allowing anyone who isn't a patient into the clinic. When we got home, Inkwell was quick to chastise us for being away from him. I was exhausted and had to sit for awhile before I could make it up the stairs. The rest of the evening I mostly just rested. I went to bed fairly early, and slept ok.

This morning I feel slightly bloated, which isn't a surprise. They pumped almost my full daily allowance of liquid into me yesterday. I suspect my pee pill and laxative will be working overtime today. I do need to check my feet and legs for any sign of dropsy (you press the skin, and see if it takes more than a second for the mark, if any, to vanish). I just wish the hydration I got would translate into less thirst.

As today is Thursday, and I got blood tests done on Monday, I should be able to see the graphs of my lab tests tonight in my online chart. Then I can see for myself what sort of progress is being made. I've been very interested in looking at the charts, even though I don't totally understand what they mean as medical information. I can at least see the trends.

I'm still very tired, but every time I've had an infusion I've had a slightly different reaction, so I don't know if this will be like the last infusion when my heart healed enough that I started passing out because the medication was too strong. Or if something else will happen with a different med. It's hard to say, but I need to watch for any signs that something has changed and report it immediately if I see it. At least I didn't throw up this time.

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Wednesday, May 06, 2020

Kidney Saga part 89

I woke up to a storm outside this morning. I wasn't sure that's what it was at first, but I heard the thunder and then rain pounding against windows.

Today is infusion day. I also have an appointment with the rheumatologist, which means I need to remember to send my weight and BP logs to her office. I'm not really looking forward to the infusion, as I still have a nasty bruise from the last one. I wish my veins were more cooperative. I'm actually getting really tired of pain from injections.

My nephrologist changed the standing orders on my blood draw without informing me, which was strange. It's now going to be every other week. So my next blood draw isn't until May 18th. So, hey, at least one fewer needle next week!

Yesterday was very calm and relaxing for the most part. My pee pill and laxative were working exceptionally well, which meant I was getting up and moving a lot - probably a good thing in the long run, but a little annoying in the moment. I won't go into details, but the laxative makes the need for the bidet more pressing.

Inkwell had a vet visit yesterday, and after it he came to me and complained about it. He's fine - everything checked out. But he definitely needed some loving after the trip. He even got a bit cuddly.

My sister and mom sent me a wedge pillow, and the angle is perfect, but the wedge itself is a little... um... solid. I picked one that was cheap, so its my fault. I guess the more expensive ones probably have memory foam instead of just foam. We put a comforter on it and it worked nicely, though, so I won't complain. It's more comfortable than the husband pillow.

There are moments when I forget I'm sick, and forget the world is sick, and I feel almost human for a bit. Then everything comes crashing back into my head. I like the moments and hate the crash. I especially hate when I forget I'm sick and try to stand up and realize how hard it is for me. I am not weak, but I'm unsteady and keep forgetting that a fall would be a horrible thing. I fear the stairs. I constantly ask Inkwell to move his furry little butt out of my way. I don't want to trip. I could walk around without the walker, but I'm terrified to try. Only when I'm in my computer chair writing or killing pixels in my video game do I feel right.

Ok, enough thought. On with my day.

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Tuesday, May 05, 2020

Kidney Saga part 88

I was completely exhausted yesterday, even though I got a good night's sleep.

I had plenty of rest, but my body definitely was in some sort of "healing" mode, and I found myself drifting off into mini-naps all day long. It wasn't bad or unpleasant, just surprising after knowing I actually slept a full night.

I did dream a little. Mostly about paying off my medical debt then paying off other people's medical debt. I guess my fantasy is being rich enough to help other people get out of their financial holes.

The blood draw yesterday was a little bit surprising. When I got there, they said the standing orders had expired - which no one told me about. They took the tests anyway, since I was there and I needed the blood panel at the least. Then when I got home I sent a message to the doctor's office. I was told my blood tests will be every other week from now on, but I wasn't told which week exactly, so I'm waiting for new information. No one informed me of the change, which I find odd.

I really really want to install the bidet that someone sent from my wish list, but I don't think I can bend over enough to do the plumbing that is required. And while Eric is a handy fellow, I'm better at plumbing than he is. I found the listing of the bidet and there is installation advice in the reviews on Amazon, so I probably will read everything and then decide if this is a project I can tackle. I have to be super careful, though. I still cannot lift myself from the floor without assistance, and the plumbing involved is close to the floor.

Tomorrow is infusion day, along with an appointment with the rheumatologist. I wonder if my medication will be changed yet again? I've already started tapering off the Prednisone and I hope she'll confirm that and continue.

I got more play time with Inkwell yesterday, which delighted him. He's definitely concerned about me, as he spent a good deal of time yesterday in the entrance to my room, watching over me. Having a cat is fun; having a doctor cat is amusing.

Today I rest. Inkwell is going to the vet today, but for maybe the first time in ages I won't be going with him. I hope he behaves. While he's gone, I'll just have to be careful, since I won't have my in-house doctor available.

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Monday, May 04, 2020

Kidney Saga part 87

Yesterday started with insomnia and grumpiness, but ended on a bit of a high note.

The internet was still having issues when I got online, but as the sun rose it started to clear up. I tested everything I could think of, but couldn't isolate a problem. There were lots of reports online of Centurylink having issues, and their own website kept dying, but as the problem cleared up I started looking elsewhere to see if something on the local network had gone nuts. Sure enough, I found it. A spider had spun a web over the security cam, which was sending constant video and photos of the intruder's webbing. It was clogging my network. I had to go downstairs and clean the cam to get it fixed. Now, I'm not 100% sure that was the problem, but I suspect it might have been.

That I was able to get downstairs was nice. Getting back up didn't take quite as long as I thought it would, although I had to get Inkwell to move his furry little butt to get up past him. Once upstairs I was once again exhausted. The insomnia and the stair climb took a toll. I sat up for awhile trying to write, then game a little. I drifted off a bit at times, but was able to get some things done before a nice leftover lunch. After lunch I napped for a long time, and woke to dinner - orange chicken. Eric managed to make orange chicken and it was really good. Maybe slightly spicy for me (I'm not a big fan of spicy food) but really excellent. Eric has been amazing.

I spent some time yesterday playing with Inkwell, who appreciated the effort. He purred and putted and meowed at me and attacked his wonderful little knitted eyeball (I need to get him another one, some time), and loved up to me. He made a sad sound when I left, but I was too tired to continue. Poor kitty.

I was able to get a little more done after dinner, gaming mostly. I went to bed at a decent hour, and actually slept through most of the night. Only once did I have to get up to take care of business. And thanks to the husband pillow, I was able to get up without much pain. The stabbing, horrible back pain that I was having previously is pretty much gone, but there's a constant soreness that's annoying and may not go away any time soon.

Today is blood draw day. I woke up later than usual (yay!) and got my shower. I'm dressed for when Eric finishes his classes and will be ready to take me to Prosser Hospital. Until then I'm going to listen to some podcasts, read comics, write, and maybe even get a little gaming in.

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