Babygirl's most recent visits to the doctors were generally productive and reassuring. Driving in the Philadelphia area during the Democratic National Convention, less so. All of the trucks seemed....confused.
Nephrology had nothing new to say. They scolded her for missing doses of medication (how does that even happen? I wake her up EVERY DAY and she has phone alarms. It's the morning pills this time, two sets still in the boxes when she sorted. UGH). The kidney is doing well despite this, with a creatinine of 1.05, about average for her lately. The headache medication still have her a bit too acidic but they decided that taking 14 bicarbinate tablets a day was about the limit. Fourteen. It's a lot of sodium, seriously. So, lab work here in six weeks, and see you in three months in Philly.
Gyn had nothing new to add. We were overdue by a couple of months there. Dr Z of course took Babygirl aside alone to question her ("Why do they always ask me if I feel safe??" she asked me later. "Be glad that question puzzles you," I replied. "Oh.").
Neurology talked Babygirl into the full 31-injection set of Botox. Watching this provider do the injections, compared to the CHOP provider, it seemed that she was more organized about her approach, or perhaps it was that she just talked more about the logic of the shot locations as she worked. The really interesting thing was that I didn't need to order the Botox from our specialty pharmacy and have it shipped to Nemours/Dupont hospital ahead of time (copayment: $300 each time CHOP had us do this!). These folks just pulled the vials out of their fridge and gave it to her. It will be part of the bill for that day, so it will be interesting to see how that plays out. I did call our insurance company ahead of time to check on this, and they weren't sure WHY CHOP had us send the medication in like thay - they would have paid for it as part of the service. Dr P, our new neurologist, tells me that they get the Botox for about $100/vial. Since they use 2 vials for Babygirl's injections, the total cost MAX would be $200, so what the heck, CHOP? Could I have my extra $200 back?? Just one more reason that I'm glad we aren't going there anymore.
One of the big problems for people with migraine is sleep. Babygirl routinely reports poor sleep, so Dr P asked me to put my FitBit on Babygirl at night to see how much sleep she is getting, which is a creative approach to data collection. I've also made Babygirl commit to turning off all electronics at 11 PM whether she is having a hard time sleeping or not.
We are to update neurology in 2 weeks with a headache report and sleep data. And then we'll see.
DeeDee
Follow a mom and a child with nephronophthisis through the kidney failure and transplantation process.
Sunday, July 31, 2016
Saturday, July 30, 2016
Sure-Fire Paint Remover....
Some years ago when I decided to paint the fireplace bricks, I painted the cheap-looking ceramic tile hearth as well. (Painting With Brownie Mix) The tiles are bland beige squares, and the former owner must have gotten a deal on them because he used them all over the house on both sides, on walls, floors, counters - places where floor tile has no business being. We've gotten rid of all of them, except these.
The ultimate goal is to install a gas fireplace insert, and when we do, we'll upgrade the sad little hearth to something pretty. Poured colored concrete, perhaps, or quartz, or Italian tile, or ANYTHING but these sad, boring beige babies.
Painting them brown helped a little, but paint doesn't really stick too well to tile unless you rough it up a little first, so over the years it has chipped away. I've convinced myself that it's charming. It's either self-delusion or go find the rest of that can of paint and touch up, and THAT always sounds like work.
Enter.....Larry.
You can see the "charming" tile next to him on the floor, under his Sudoku book. He's chill that way.
We've had him since mid-May, and he's been a perfect gentleman. Or he WAS, until the Great Backyard Apocalypse engendered by our neighbors' July 4th celebration began. Apparently setting off fireworks less than 30 feet from his head was more than he was prepared to take. And thus began Poopmaggedon. It took us nearly two weeks of leash-walking the poor boy into the backyard every day to convince him no one was going to kill him. And in the meantime, his guts were in a total, uncontrollable uproar. His location of choice to let go? The tile.
It could have been worse. He didn't select the Chinese rug, and he (mostly) avoided the hardwood. And the tile is not in a path that anyone has to cross in the dark. But let me tell you: Dogshit is fabulous paint remover. Every successive cleanup peeled larger and larger circles of paint off of those tiles, leaving the left side completely, well, unpainted.
If it weren't for the smell, there'd have to be a patent here someplace. The supply appears unlimited, it's cheap to produce and probably not hard to package and ship if anybody needs some. I'd be happy to help out.
DeeDee
PS Some crating, probiotics and regular walks have him set right.
The ultimate goal is to install a gas fireplace insert, and when we do, we'll upgrade the sad little hearth to something pretty. Poured colored concrete, perhaps, or quartz, or Italian tile, or ANYTHING but these sad, boring beige babies.
Painting them brown helped a little, but paint doesn't really stick too well to tile unless you rough it up a little first, so over the years it has chipped away. I've convinced myself that it's charming. It's either self-delusion or go find the rest of that can of paint and touch up, and THAT always sounds like work.
Enter.....Larry.
You can see the "charming" tile next to him on the floor, under his Sudoku book. He's chill that way.
We've had him since mid-May, and he's been a perfect gentleman. Or he WAS, until the Great Backyard Apocalypse engendered by our neighbors' July 4th celebration began. Apparently setting off fireworks less than 30 feet from his head was more than he was prepared to take. And thus began Poopmaggedon. It took us nearly two weeks of leash-walking the poor boy into the backyard every day to convince him no one was going to kill him. And in the meantime, his guts were in a total, uncontrollable uproar. His location of choice to let go? The tile.
It could have been worse. He didn't select the Chinese rug, and he (mostly) avoided the hardwood. And the tile is not in a path that anyone has to cross in the dark. But let me tell you: Dogshit is fabulous paint remover. Every successive cleanup peeled larger and larger circles of paint off of those tiles, leaving the left side completely, well, unpainted.
If it weren't for the smell, there'd have to be a patent here someplace. The supply appears unlimited, it's cheap to produce and probably not hard to package and ship if anybody needs some. I'd be happy to help out.
DeeDee
PS Some crating, probiotics and regular walks have him set right.
Tuesday, July 12, 2016
Turning It Upside Down....
Once you have lost 80 pounds, you have a little....mmmm....slack. Since I have about 20 more to lose to get anywhere close to a healthy weight, I have to live with this for the time being. Dressing around this requires careful shopping and fitting, and if you all want to say you never noticed, well, then, I'm shopping pretty well, thanks.
But I'm enjoying this yoga thing, so I'm making a comittment in appropriate clothing. I had pants, but they were purchased about 30 pounds ago. Loose t-shirts do okay for cover up, but when you go into Downward Facing Dog, you get Upward Facing T-Shirt. Not only can't you breathe, but everyone else gets a flashy show. And the slack stuff?
Okay. Feel free to stop reading if you are faint of heart. Or take a shot of whiskey or something.
It's bad enough that when I am moving quickly up a hill there are inexplicable squamous smackdown noises when my 'apron' meets my upper legs. Turn that upside down and there's an almighty adipose avalance toward my ribcage. To make things worse, I finally learned how to relax all my facial muscles when I'm upside down. I'm thinking that perhaps Maybelle the hound-dog has been reincarnated in the result: I can feel my jowls displace my cheeks, but that's okay because I think my cheeks have shoved my eyelids up to my hairline. (Side note: If I were truly intended to put my arse above my wrists, a merciful Father would not have let it get so big.)
Thank God for Old Navy. They actually believe that Plus Size women exercise, and they make stuff that keeps your skin from sliding all over the damned place while you do it (well, except my face. No fixing that in this life, I suppose), and shirts that stay DOWN without making you look like you are wrapped in an inner tube. I wouldn't wear it to Walmart (although I've met people who would), but I'm okay for class.
So far this has had no measurable effect on headaches for either Babygirl or I, but I feel like my posture has improved, and I can tell my balance and upper body strength are better. It's an easy place to meditate. And it seems nice to be in a 'sport' where the only competition is internal, and everyone cheers everyone on.
DeeDee
But I'm enjoying this yoga thing, so I'm making a comittment in appropriate clothing. I had pants, but they were purchased about 30 pounds ago. Loose t-shirts do okay for cover up, but when you go into Downward Facing Dog, you get Upward Facing T-Shirt. Not only can't you breathe, but everyone else gets a flashy show. And the slack stuff?
Okay. Feel free to stop reading if you are faint of heart. Or take a shot of whiskey or something.
It's bad enough that when I am moving quickly up a hill there are inexplicable squamous smackdown noises when my 'apron' meets my upper legs. Turn that upside down and there's an almighty adipose avalance toward my ribcage. To make things worse, I finally learned how to relax all my facial muscles when I'm upside down. I'm thinking that perhaps Maybelle the hound-dog has been reincarnated in the result: I can feel my jowls displace my cheeks, but that's okay because I think my cheeks have shoved my eyelids up to my hairline. (Side note: If I were truly intended to put my arse above my wrists, a merciful Father would not have let it get so big.)
Thank God for Old Navy. They actually believe that Plus Size women exercise, and they make stuff that keeps your skin from sliding all over the damned place while you do it (well, except my face. No fixing that in this life, I suppose), and shirts that stay DOWN without making you look like you are wrapped in an inner tube. I wouldn't wear it to Walmart (although I've met people who would), but I'm okay for class.
So far this has had no measurable effect on headaches for either Babygirl or I, but I feel like my posture has improved, and I can tell my balance and upper body strength are better. It's an easy place to meditate. And it seems nice to be in a 'sport' where the only competition is internal, and everyone cheers everyone on.
DeeDee
Sunday, July 3, 2016
The Downside of Fit....
Adding three 75-minute classes/week to a full schedule sucks some time out of your life, you know? Not that the yoga hasn't had some very nice benefits. Babygirl and I get to spend time together. We are getting in better shape. We have some new life skills: Breathe. Be in your body. Let your shoulders relax down your back.
I no longer fall sideways everytime I stand on my left leg. Babygirl is beginning shape up a nice plank. Neither one of us has any real good news to report yet on headache improvement, but it's less than a month, so....
In other news: Larry. My sister-in-law (an animal savant if ever there was one) said, after one brief glimpse of Larry, "He's at least 10" despite the rescue's estimate that he was about 6. Our vet saw him the other day, and she agrees with my SIL - he's probably about 10 years old. Ah, well, we don't care, he's cute, and walking him has made him younger every day. Yesterday's walk had him leading ME the whole way. He's so different from Maybelle. She selected a different route every day, and crossed the street as often as I would let her. Larry is more predictable: Go west until I won't go west anymore, then go north until I turn him toward home. Unless it's hot, then south to the river. We've heard him bark only twice, once when another male dog tried to check out his sexuality and he let out a houndy, "Notgay!" and once in the middle of the night, when he bayed at SOMETHING outside the front window for long enough to wake us all up.
So life is pleasantly boring, but singularly lacking in free time.
Besides, it's summer. I have books to read, and grandkids to hang out with.
DeeDee
I no longer fall sideways everytime I stand on my left leg. Babygirl is beginning shape up a nice plank. Neither one of us has any real good news to report yet on headache improvement, but it's less than a month, so....
In other news: Larry. My sister-in-law (an animal savant if ever there was one) said, after one brief glimpse of Larry, "He's at least 10" despite the rescue's estimate that he was about 6. Our vet saw him the other day, and she agrees with my SIL - he's probably about 10 years old. Ah, well, we don't care, he's cute, and walking him has made him younger every day. Yesterday's walk had him leading ME the whole way. He's so different from Maybelle. She selected a different route every day, and crossed the street as often as I would let her. Larry is more predictable: Go west until I won't go west anymore, then go north until I turn him toward home. Unless it's hot, then south to the river. We've heard him bark only twice, once when another male dog tried to check out his sexuality and he let out a houndy, "Notgay!" and once in the middle of the night, when he bayed at SOMETHING outside the front window for long enough to wake us all up.
So life is pleasantly boring, but singularly lacking in free time.
Besides, it's summer. I have books to read, and grandkids to hang out with.
DeeDee
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