Liza Lou

One of my favorite books as a kid was Liza Lou and the Yeller Belly Swamp.

It's written by Mercer Mayer, who also wrote such classics as There's a Nightmare in My Closet and The Little Critter series.  These were also among my favorites, and before I could read them on my own, I figured out they were drawn by the same person.  I'm not an artist by any stretch of the imagination, but as a pre-reader, I spent hours poring over these illustrations, so much so that when I came across something else drawn by Mayer, I recognized his style.

I ordered this book for my daughter last year, and was gratified when, on the day it showed up on our doorstep from Amazon, she immediately wanted to read it.  And then, when we were finished, she wanted to read it again.  And again.  And again.  Last night she asked for it again, so I pulled it out and read it to her.  It was late, though, and it's not a super fast read, so I skipped some sentences to make the experience go a little faster.

She caught me.  Scolded me.  And told me to READ IT RIGHT.

Then she asked me to stop so she could look at the pictures.  Which is fine and everything, but it was late, and I was impatient, so I told her to wait until we were done, and then she could go back and look at her favorites.

She did, and then asked me which illustration was my favorite.  I showed her.

Like I said, I'm no artist. Really, I'm the opposite of artistic.  But I've always loved this illustration, the way that Mayer did the close-up of the little girl, so we know how small the fly is, how her eyes are calm and serene, but the possum's eyes are frightened (because SPOILER ALERT that blue bottle fly is really the Sly Swamp Devil, who we all know will jump down inside a person and steal her soul away).  And even as a kid, I thought the color of Liza Lou's skin was beautiful.

While talking to my daughter, I pointed out the things I liked---her skin, her eyes, the possum's eyes, and then I pointed to the hands.  I think the hands are just beautifully drawn, and told her that.  She pointed to the heel of Liza Lou's hand, the one holding the cork, and said, "I think that looks like two kidneys!"

Well. So it does.

Hope, Inspiration, and Wisdom: A Treasury of Thoughts on Coping with Kidney Disease

This showed up on my doorstep today.  It's a book from the Renal Support Network, a treasury of essays generated from their annual essay contest.  Remember that contest? I entered and won $50 for being honorably mentioned.  I was pretty stoked about the $50, which I think I spent on a pedicure, and plus I got a cute certificate that I ended up throwing away.  (My apologies to whatever graphic designer made that certificate.  It really was quite lovely.  It wasn't personal, I just have a hard time managing paper in my life.)  I thought the cash and the certificate would be it, but, here we are, a book!

The essays are short, which makes for a quick read, I'd imagine. I haven't read it yet. I don't know if any of the essays are good, and my own essay is constrained by the topic and the word count limit of the essay contest (although I'm noticing that not every essay adhered to that word count.  I edited my dang essay so many times to get it within the word count that it makes me a little annoyed that others ignored it, but whatever.  I'm not bitter or anything.).  I would have written a very different essay about PKD if the theme had been more fluid and less specific, but to be honest, I wasn't writing it to be heard or even to express myself, I was writing it for the money.  First place was a couple of hundred bucks, which sounded appealing and within my reach.

So it's a pleasant surprise to be included in this treasury, and I'm glad it's out there.  I think it's supposed to be Chicken Soup for the Kidney Failing Soul, or something. I know I sound like I'm being flippant, but actually, I think this is really cool.  I always feel a little guilty about how little I do to raise awareness, so I'm grateful that there are folks like the Renal Support Network who take this work more seriously than I do.

So here's the link for the book: http://www.amazon.com/Hope-Inspiration-Wisdom-Treasury-Thoughts/dp/1482643537.  Happy reading!

In one so young

I saw the eye doctor yesterday.  It was a good visit, one where we talked seriously about surgery for my cataracts.  I liked her--she was direct, efficient, asked good questions.  I wouldn't recognize her if I saw her on the street though, as I didn't have my contacts in when she walked into the room, but her voice was lovely.

She asked about my blood pressure meds.  Why does somebody who is 37 need blood pressure meds?

She asked about my kidneys.  How well are they functioning?

We talked about my vision, how I sometimes have a hard time with simple things like reading music on the piano, and how I can't really watch TV because the couch is too far from the screen and I can't see it, and how every time my husband sees me read, he comments that I need new eyeballs because even with my contacts in, I'm reading with my book ridiculously close.

She kept commenting along the lines of "Wow, in someone so young...."

I texted my sister while in the waiting room, commenting how I was, by far, the youngest person in the room.  Probably by about 30 years.  My sister is a diabetic and I asked her if she feels the same way in her doctor's office.

She texted back:

"We have old people diseases."

We totally do.

Is that agist?

Maybe.

Still, I do feel like most 37 year olds don't worry much about their blood pressure OR cataract surgery.  Seems like that's something you'd expect to face in your 70s.  Or 80s.  Or 90s, because if 40 is the new 20, then 70 is the new 50, and really, these days you have be 90 before anybody even thinks you need Medicare.

Anyways, the outcome of the appointment is that she's going to put me in some new contacts, see how it goes, and follow up in 6 months.  I can live with that.

She did tell me, though, that with my issues, once we go the surgical route, it would change my life.  And she said "Change your life!" as if she was saying "BLOW YOUR FREAKIN' MIND!"

Surgery is risky and costly and all that, and I'm not keen on spending my life needing reading glasses, or, most likely, losing my reading glasses (I already spend my life losing my keys and sunglasses and wallet and most everything else.  Even lost my kids a coupla times.).

But still, I'd like to be able to see.  Maybe reading glasses is a small price to pay.

(Well, actually, reading glasses is just a small fraction of the *actual* price I would be paying to fix my eyes--- you know, the thousands of dollars that eye surgery requires that is most likely not covered by insurance, but you get my drift.)

Kale makes you poop and other stories

I'm trying to revamp my other blog, mormonmommywars.com, and I'm getting into serious code/server/Yeti territory.  I have no idea what I'm doing, so mainly I'm just clicking on links and texting people things like, "Hey, what does PHP mean, and do we have any of it?"

In the process, I'm digging out stats for both blogs, which include google searches that lead people to the bloggy goodness.  I ask the question, how do people get here? And the answers are always, ALWAYS awesome.

Mostly people get here because I send them here, either through a link at Mormon Mommy Wars, or from Facebook (I am nothing if not shamelessly self promoting.).  The other big lead is if you google "PKD Blog", mine comes up on the first page.  That's kinda cool, actually, although it also speaks volumes about how little there is online for folks like us.  Bit by bit, I suppose.

What made me really laugh were the following searches:

Does kale make you poop
Kale and poop
Can kale help you poop
Does kale make you throw up

And my very favorite:

Flatulence and PKD

A few folks want to know about depression and PKD, but mostly, people want to know about kale.  And poop.

Which is understandable, really.  Everybody likes kale, right? I like kale, and I like to talk about poop.  I have an excuse, though--I have two kids and two dogs.  When you have two kids and two dogs, your life revolves around poop.  And you know you are kinda letting the poop win when you find out the lawn guy has dubbed your house "poopville".

Yes, we are *that* house.

(Wait, did I even mention I got a new dog?  I did. He's a puppy. I'm insane.)

Yes, that's a fence, yes, he's bigger than it, yes, he has figured out how to open it.  After the dog escaped the 4th time, my husband finally lashed the fence shut with a leash.

He's not really a dog, he's more like a moose.  A big, dopey, lovable, slobbery moose.  I'd say he's a dumb moose, but he did figure out how to open the back gate before he was even a year old (yup, he's only 7 months old in that picture.  Did I mention he's a moose?)  Our black lab, Maggie, has lived in that backyard for almost 7 years and never once opened that fence.

She's kinda dumb though.  And really fat.

She did, however, figure out how to buckle herself into the car, so maybe I ought to give her more credit.

Having big kidneys

I got a wild idea last summer, and tried on my wedding dress.  I've been married for almost 14 years, and am only about 5 pounds heavier than I was when I got married.  I figured it would fit, and I'd spend a couple of silly moments with my daughter, pretending we were princesses or something (my dress was really really poofy.  Sue me.)

It didn't fit.

I couldn't zip it.  It fit over my hips and my butt, and it looked like it would fit around my bust, but I couldn't zip it past my waist.

This made me sad.

I know it's silly to want to be able to fit into a dress that I wore 14 years ago, and that such an expectation is a pretty tall one.  I mean, how many women can still fit into their wedding dress?  But for some reason, it made me mad to think that I've done a pretty good job of keeping my body in good shape, indeed, am probably stronger and healthier in a lot of ways than when I got married (I was playing a lot basketball and doing a lot of walking back then, but I was also a full time graduate student which meant a lot of time sitting on my butt) but I still can't fit into that stupid dress because of my overlarge kidneys.  As my kidneys gets larger, my waist is slowly disappearing.

Is it vain to admit that as I think about my future kidney transplant, one of my thoughts is, "Well maybe I'll be able to get back into my wedding dress." ?

Yes. Yes it is.

I don't care.

Shut up.

More eye stuff

In January, I made an appointment with an eye surgeon, just to get a baseline for my cataracts, and see what we're dealing with.  I told the nice appointment lady that I didn't need one right away, that whatever happened to be the doctor's first available was fine, even if it meant I'd wait 6 months.  She was surprised and said, "Oh thank you, that makes my job so much easier!" Of course, when she called back at 9:02 the next morning as I was getting my kids out the door for school, and my son handed me the phone and said, "I think it's a telemarketer, or something.  She didn't know our last name", she probably didn't think her job was so easy when I grabbed the phone and barked that I didn't have time for anything right now.  (Yes, I was embarrassed when she meekly said, "I'm calling from Dr. Kaz's office?"  Oops.  Sorry about that.)

So my appointment is in April.

I wish it was tomorrow.

I can't see things anymore.

Okay, I'm not, like, completely blind, but even as I type, I'm struggling to see the screen that can't be more than 2 feet in front of me.  I was reading earlier, on a Kindle, and struggled to see that.  It's long been difficult to play the piano (although my difficulties there are also due to the fact that as a pianist, I kinda suck), and if I can, I let my husband drive at night.  This is huge for us, as we discovered long ago that the success of our marriage hinges on me driving any time we're together.  He says it's because I'm the worst back seat driver known to man.  I say it's because I hate putting my life and the life of my children in the hands of a colorblind crazy man who isn't 100% certain when a traffic light is red.  (Yes, we've had many close calls.  That's a different post altogether.  If you'd like to read it, I did actually write it up once.  I wrote it up with a religious bent, for a religious blog, FYI.  It's still a good story, though.)

Anyway, I think I need new eyes.  Soon.

Dang it.

Take two lisinopril and call me in the morning

The blood pressure, it is bad.  Well, not super bad, but not super good.  It could be that I'm officially lazy, having never quite recovered from my forced exercise hiatus last year when I broke my foot, or it could be that my progressive kidney disease is, well, progressing.  As I told a friend today, it's not unexpected, because PKD is indeed a progressive disease, but it's always kind of a bummer when things get worse.

So now I'm on 10 mg of lisinopril instead of 5mg, with 40 mg of Telmisarten, the drug from the HALT PKD study.

The double dose makes me feel lousy.

Maybe I should get off my meds and just run a marathon instead.

(HAHAHAHAHAHA.  Sorry, had to laugh at my own joke, there.)

The dose was changed at my last appointment with Dr. Steinman up in Boston.  My appointment coincided with the WORST STORM EVER AND WE'RE ALL GONNA DIE moment in New England history, and because of the impending doom of winter storm Nemo (when did winter storms get names? Were they jealous of the hurricanes?) everything was pretty rushed.  I did end up getting stuck smack in the middle of the storm, and even had to spend the weekend in Boston.  Luckily I have some excellent family members who live just outside of Boston, who took pity on me and put me up for 2 and a half days.  The snow was insane, and for once the weather guys had it completely right.

Boston.  Always an adventure.

I didn't get to see my kidneys this time, either.  The tech didn't have time to show them to me, which in a weird way was disappointing.  What's the point of sitting in an MRI for two hours, freezing your butt off while you stay perfectly still if you can't even see the pictures they're taking?

Oh well.  Maybe next time.

In other non kidney news, we got a puppy last month.  We are officially insane.  My goal is to make him a therapy dog, and he was getting excellent marks in his obedience class up until last night, when he acted various scenes out from Marley and Me.  He's getting big and powerful, but is still puppy-ish and goofy, all of which adds up to maximum destruction.   At least he's soft.

My son, a rising 6th grader, wants to homeschool next year.  I have always said that if my child ever wanted to leave the public school system, for whatever reason, and homeschool, that I would always make that option available.  Well,  to my surprise, he's cashing that option in, and I wonder how on earth I thought I could do it.   May God have mercy on my soul.