Posts Tagged ‘insomnia


Five Weeks

I'm officially not anemic anymore!

My creatinine is well below 1!

My GFR is holding at 95! 95!!! Up from 7!

I feel great! My incision has healed up nicely. I'm hardly experiencing any discomfort at all anymore. I'm getting my strength back, walking as much as possible, and going up stairs. I'm drinking, and staying out late, and still have plenty of energy to work five days in the office and go out on the weekends.

I have my life back. I haven't felt this good in years.

I got to taper my steroid dosage back down to 5mg this week. I don't seem to be experiencing much side effects from any of my new meds, except possibly some insomnia from my anti-rejection meds. I've been having a hard time falling asleep and only staying asleep for 4-6 hours most nights. So far, that's enough to keep me highly functional, though not ideal.

I was able to gain back 5lbs pretty quick, but I'm still a bit underweight. Things seem to have plateaued, so I think I'll be stuck here until I can do more physical activity and build some muscle back up.

My twice a week labs are getting pretty tiresome, but maybe those will get reduced at my doctor's appointment in a couple weeks.

Everything's great, and I'm so, so happy.


After several days of really bad insomnia leaving me really strung out feeling yesterday, I finally got what felt like actual sleep last night. THANK GOD.

I drove my car today! I ran a bunch of errands and prepared all my own meals!

My ankles are fucking wrecked.

I was on my feet a ton today and they are massive. Elevated for the rest of the night, and tomorrow. I cleaned out the fridge, tidied up a bit around the house, did some Christmas shopping, picked up a few items for myself to get through these extra husky weeks I’m having, and spent a lot of time analyzing food labels and picking up some low-sodium/protein snack options for work.

There was something very weird about trying on clothes that I hope don’t really fit in a couple months. I realize this a normal thing tons of people do, but I’ve never targeted a different weight before, so it’s a new experience for me. It’s also weird to try on clothes when your sausage legs are full of water and will, to a degree, take on the shape of whatever vessel they’re in. Seriously, they’re so squishy and weird. It’s super disturbing. But I needed one more pair of pants I can wear to work–mission accomplished. I hope that’s the closest to a dressing room breakdown I ever get.

I’ve made some observations.

  1. There is a lot available for people looking to cut out sodium, but you have to look pretty intensely for it and always pay more. It’s roughly 3x more to get a can of tuna without salt added, for example. I hate our food system. My sodium limit is not much less than the suggested daily for an average person. People are killing themselves with all this extra salt they’re not even aware of.
  2. I pretty much don’t need to worry about my potassium limit so long as I’m not eating bananas, avocados, or tomatoes. My protein and salt limits take care of the rest anyway. All the delicious high-potassium preparations of potatoes are too salty for me to enjoy. This is a relief because potassium is hardly ever listed, making it really hard to track on the fly. So long as I stay away from large quantities of danger items and pay attention to salt and protein, my kidney diet will be fine.
  3. Items that are gluten-free, unless marked as ‘good source of protein’, are generally a nice shortcut, as long as they don’t have a ton of potassium or salt. A lot of the stuff that gets removed to make something gluten-free also makes it lower in protein, unless they’re trying to compensate for that in particular.
  4. I was definitely eating a ton of protein as a vegetarian. Anyone who ever gave me crap for the last ten years about getting enough protein on my diet can retroactively STFU and probably leave the other vegetarians they know alone, too.
  5. Calcium is interesting. I’m on a lot of calcium supplements because the steroids are bad for my bones. I think I’m starting to notice when I go too long between supplements throughout the day. I’m digging into it. Calcium absorption is apparently very complicated.

M&D are in LA for the next week and a half, so J and I are on our own. I plan to do the same wfh/office split this week, to manage my water-retention gravity-hates-me problems. Despite being super active today, I still have a lot of energy, which is great! My body is just wrecked — my ankles/feet are killing me from all the standing/walking. I made the HUGE mistake of picking up Rosie yesterday morning and now my arms are wrecked, haha. Gonna take a while to build my strength back up I guess, whoops. Here’s hoping I get more sleep tonight.







Uncle Bill = Dad + Grandpa + Awesome

“Better” is pretty relative. I’m dealing with a lot of side effects from these steroids that are very unpleasant. From my perspective, if I wasn’t on these steroids, I would feel pretty fine. But since the steroids are the thing keeping my kidneys functioning at all, I guess we can’t really say that. Soooo here we are. Insomnia, mood swings, 25 extra lbs of water weight putting strain on my muscles and joints, and working-for-now kidneys. I think the anemia is getting better — I’m able to carry jugs of juice from the fridge to the counter again without feeling like I might collapse! I’ve more or less got my diet figured out — it’s still an adjustment, but I’m making progress. The salt limit is definitely the tricky one, just because it’s so low. My overall mental state is improving — extreme mood swings and general irritability from the steroids notwithstanding.

To keep my legs more usable, I’ve started keeping them elevated as much as possible. I elevate them when I sleep and I keep them up all day long while I’m working/hanging out. They’re still sausage legs but at least I can walk on them. The skin is still too tight, especially behind my knees, but it’s not total fucking agony. The tradeoff is more of my water weight is sitting in my waist, back, chest, and face causing more pain there. I’ve decided to think of this as me turning into Santa Clause just in time for the holidays! I hit what I hope is peak chubalicious on Saturday morning.


Ho ho ho amirite?

I’m trying to return to some normalcy this week — part of which is resuming a full work schedule. I know I’m not physically capable of doing a full week in the office with this weight being so susceptible to the whims of gravity, so I’m trying to work from home a couple days and go into the office a couple days and see how it goes. I’ll have a much better idea of what my real limits are after trying to spend a day working in the office tomorrow. I worked very effectively, I think, from home today, but if I don’t get out of this house I’m going to lose my goddamn mind. I’ve already planned to stay home Wednesday, assuming my legs will probably need the day off and if I’m in rough shape from overdoing it, I’ll take a full sick day to recover. Don’t worry everyone!

I’m seeing Josh first thing Thursday morning — hopefully getting a bit more clarity on my prognosis and finding out what the tapering schedule is for these fucking steroids. Also going to take his temperature (heh) on consulting an acupuncturist.

I’m due for my next chemo treatment next week, but I’m trying to get it moved to the week following. I have a lot of shit going on next week that makes blowing up my blood levels again really inconvenient to say the least, but so far I haven’t been successful calling a number to get to a human who can move an appointment on a calendar, so we’ll see how that goes. Wish me luck!