Daily Mew #149

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Late last night I realized that almost all the daily mews this week have been in the car on the way places. Bleh! Things have been so go-go-go there hasn’t been time to stand still long enough to pose anywhere. I was determined not to take a car picture today though.

Saw the Nephrologist. He had some good news! He was MUCH less concerned about my kidneys and while we do need to keep a close eye on them and do a bit more testing (nothing invasive) he said things look pretty good overall. This is nothing to panic about yet. Whatever it is he thinks we caught it early enough to hopefully prevent it from turning into something bad. Such a load off my mind.

He was more concerned about my kidney stones. I actually had no idea but the one I DID know about got bigger (7 mm) and I now have TWO more (6 mm and 4mm) and they are both in the same kidney! I had no idea those other two existed at all but two of those are too big to pass peacefully. We’re going to do a bit of testing (again nothing bad) to figure what they are made of and then he said he will probably be able to give me pills that could shrink them so that they pass on their own OR help them become less serious when they DO pass. That’ll be nice. I’ve passed kidney stones before, I don’t want to do it again. And again, no surgery or invasive testing or anything so I was gung ho.

So I’m getting my tests done and we’ll discuss everything at the next appointment. It was nice to have an easy appointment for once.

Apologies for that blanket in the floor, by the way. I got a little behind on laundry because we didn’t get home until late last night and had to leave early today.

Daily Mew #148

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I got a phone call from my neurologist with some bad news earlier. My nephrologist was postponed until tomorrow though and I need to go to that to see exactly what this all means. I’m being seen though so at least there is that. We’ll figure it all out.

Tonight was errands! Just got in. I’m soo tired. Not sleepy though, heh.

Earrings Solved

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A while back, Master gave me a new rule about wearing earrings each day.  While it does not say so in my original post, the rule is for when we leave the house.  The rule is not a new one anymore, and I always remember them now.  My ears are somewhat finicky though, and we don’t really know why but there are days I will wake up and they will be bleeding (not a ton, just a few drops, or there will be dried blood on the ear) and sometimes they will be swollen and bright red.  Again, we have no idea.  I only wear earrings with a sensitive skin post because my ears have always been sensitive, but I do still have trouble with them from time to time.

Due to my trouble wearing earrings, Master has taken to inspecting my ears that day before I put the earrings on to make sure that I don’t have any weird bleeding or swelling.  If I do, I don’t wear earrings that day (per his orders).  Six days out of seven, this process works quite well for us, with the exception of the one “early” day..  Infusion!

Infusion days are hectic.  I need to be up, ready, and out the door dressed with some kind of food in hand, and with cream on my port so it has time to set in.  Master doesn’t always have time to check my ears before we go, and then when we get on the road, I will realize that I forgot to ask him to check my ears and worse, I don’t have any earrings with me.  I hate failing at my rule like that.

Recently, I ran out of yarn.  I still have yarn to work on during the day, but I don’t work on anything striped while we’re watching TV at night because I’m more likely to mess up the stripey scarves if I’m not paying full attention to them.  I usually am working on a single color scarf while we watch TV.  At the moment, I’m waiting for my new yarn to arrive by mail, so I’m just working with scrap yarn.  I’ve been making cozies for Master’s soda cans, and I’ve also made sex toy bags out of scrap yarn I have kicking around that’s not enough yarn for a scarf or other project.  In the middle of my last project, I got the idea to make this little pouch.

It’s nothing fancy, only about two inches by two inches.  I sewed a little button on it too to keep it shut in my bag.  It’s just small enough to hold a couple pairs of earrings, and I keep it in my ostomy bag so that now I always have a pair of earrings with me, even if we have to scoot really fast in the morning due to the rush-rush-rush.

Kind of funny though, is that since I made this little bag, I haven’t forgotten to ask Master to help check my ears in the morning.  Almost like the act of making it and keeping this little pouch in my bag has fool-proofed me from forgetting, even in the hustle and bustle.  I’ll take it.  I think the process of putting so much time into such a small little bag really made me think about its purpose and the fact that earrings are so important to Master Pravus, and thus, to me.

 

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Still, a little insurance never hurt anybody, and the prepared slave is the happy slave.

Complicated and Frustrating

Yesterday I made I tweet where I said getting better is complicated and frustrating.  It’s true, it is.  I hadn’t tweeted all day and I wanted to tweet something, but I didn’t want it to be complicated and long, so that’s what came out.  So true, it is.

I started the Prednisone on Friday.  I was warned ahead it’d make me want to eat everything, and I’d feel the effects quickly.  I was told I’d have a bunch of energy especially because I was being given such a high dose.  I’ve been on steroids before, so I knew what to expect in other ways: insomnia, acne, moon face, etc.  Other than the insomnia, I don’t particularly expect anything other side effects to be “overnight” things.  Dry skin, puffiness etc will all be things that kick in within a few weeks, most likely.

I took my first dose on the way to Infusion after eating a small snack.  I was warned to take my new medicine with food.  I always get food at Infusion, and it’s always two slices of dry white toast, a boiled egg, and a green tea.  Nothing big, but for me that’s a pretty substantial meal.  If I’m going to get solid food in, my best bet in first thing, and then I tend to eat liquids for the most part.  Anyway, Prednisone is unlike Florinef in that Florinef takes six weeks to kick in.  Prednisone doesn’t take that long.  I didn’t notice anything too different while we were at infusion (and we were there for about two and a half hours) however, I noticed that despite the fact that the kitchen accidentally only sent up one slice of dry white toast, I seriously struggled to eat it.  I felt full after eating only half of it, but I don’t usually have that much trouble first thing, least of all with the first slice (as I said, I always get two).

We left Infusion, and we had a couple of places to go.  Nowhere spectacular.  We had a couple little things to pick up that we didn’t manage to get on errand night, so we generally will do that after Infusion which is when I’ll typically have the most energy.  The first store we only needed maybe two items in, and I didn’t need a wheelchair or scooter.  I don’t ordinarily need a chair or scooter for one item unless we’re in a giant warehouse type of store, although on my bad days (or if we know there will be a long line or something) then I’ll sometimes need it.  I didn’t think anything of the fact that I didn’t need help to get around until we got to the second store, which was a giant warehouse type.  I never ever am able to get through there due to the long lines at checkout without at least a scooter, but before we went into the store, I told Master I didn’t feel like I needed my chair or the store scooter.  He was surprised but let me try it out anyway.  I was completely fine.

We had a couple more stores to attend, but I didn’t use my chair or scooter in any of them and I even went home and cooked, did errands, and crocheted a bit.  This is much more than I usually accomplish on an Infusion day.  I need to be up so early for Infusion that I am usually wasted for the remainder of the day.  My current step goal right now is 2,000 and on that day, I got over 7,000.  This was a smashing it out of the park kind of day.  I was even able to do a bit of light strength training with two pound hand weights.  That is not something I’ve been up for in quite a while.  It was pretty miraculous.

I didn’t feel much different on the whole though.  I simply went through the day feeling “normal” (or, my version of normal) and even though I was tired I was in no way lightheaded or in need of rest.  It was great.  Once we got to bedtime, however, everything changed.

Master put my cuffs on and tucked me in, and when I laid down I started to notice palpitations.  I’m really not the type to worry about palpitations.  I have POTS, so I’m pretty used to them.  My heart was racing, but it wasn’t pounding, so I didn’t care.  The only thing that was an issue was that I couldn’t sleep at all due to this (I mean, when your heart is set to “speedy” sleep doesn’t come easy.  So, I spent all night tossing and turning until around 4AM when I finally got to sleep.  Ah, insomnia.  I really didn’t expect it to arrive so quickly.

The following day, I took my new medicine and I felt..  Speedy.  I didn’t have anywhere to be all day so I got far less steps, but I did hit my goal and then I went about working on chores (laundry, dishes, general tidying, sewing, etc) until Master came home.  They are doing an upgrade at work, so he’s working all weekend.

Master was quite impressed with my new found energy.  I was able to get a bunch of stuff done, cook dinner, sew in the Mewtique room, etc etc.  It was (again) pretty nice.  That night, Master made the decision to let me stay up in the front room and play video games rather than try to sleep.  Lying down when you are wide awake doesn’t help insomnia.  He put my cuffs on me and told me to come to bed when I felt like I was tired enough.  I did, and I fell asleep around 3AM, which was earlier than the previous night and probably due (at least in part) to not lying around tossing and turning.

This morning, I feel like I did before I even started the medicine.  Complete zombie bullshit.  I’m exhausted and kind of out of it.  It’s a rest day, so I’m not worrying about steps and I’m doing chores in bits and pieces, but nothing really miraculous has happened.  Some laundry, some dishes, crocheting, that kind of thing.  Sadly I don’t think I’ll make it into the sewing room today, but hopefully tomorrow.

The one thing I’ve noticed aside from the increase in energy is that the new medicine has the exact opposite effect on my stomach as we thought it would.  I’m even less hungry than I was before, and considering I have gastroparesis, that’s saying something.  I’m probably eating about half of what I ate before starting this medicine, and I was only getting three or four total cups of food in per day.  It’s nice that I likely won’t need to worry about weight gain (unless things change and I get this side effect later on) but I wouldn’t be surprised if I wind up losing weight on this medicine.  No appetite, very little sleep, and I can’t stop moving.  At least, I couldn’t stop moving the first few days.  I’m unsure if this is just a random bad day, if I’m having a bad gastroparesis day (meaning, food is moving even slower through my stomach, and therefore I haven’t digested the medicine yet, so I may yet get a burst of energy later) or if I’m just tired from doing so much the last couple of days.

It’s complicated and frustrating.

Still, after a couple of decent days, I do have a lot of hope that the medicine will help me.  We’ll just have to see what tomorrow brings.  I did see some progress, and I really hope to see more.

Just A Bit Of Cupping

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Just a couple pictures from a recent cupping session I thought I’d share.  I’m hunched over because we’re not yet sure if it’s a great idea for me to be lying flat on Gob, so Master put ZeeBee in my lap for me to hug (and cushion Gob) and he put my black wrist cuffs on and g-clipped them together (not pictured).  It’d been a bit since I got cupped so I really enjoyed this.  Maybe when Gob is totally healed up I’ll be able to lie flat or flatter.