Sunday, November 03, 2013

More eyes

I saw my eye doctor last week.  I am officially scheduled for cataract surgery---hoo--friggin'--ray.  It consists of large amounts of office visits, prep visits, pre visits, post visits, and follow-up visits, which, of course, means large amounts of co-pay goodness.  Also, I have a new issue--glaucoma!!  Not full blown glaucoma, but something that the doctor called "suspicious" measurements, so she wants to get a baseline measurement before we do surgery, which means that January is going to be very, very busy, and I will be seeing a lot of this women.  Seriously, like, a lot. Like, almost once a week a lot for about 9 weeks.

Still, I think it's worth it.  Eyes.  They're kind of important.

I missed the PKD Walk again this year, which makes me feel guilty, like always.  There was a lot on our collective family's plate, though, so, we skipped it.  I didn't even make a donation (hanging my head in shame).

It's not that I don't appreciate the PKD Foundation, or the great folks who plan the walk.  I do, so very much, and I know how much work goes into it.  I also know there will a come a time in my life when I will want to get more involved.  That time is just not quite right now.  And is it bad that I want to kind of ignore my kidneys while I still have the luxury of doing so?  I have a couple of things in life I still want to accomplish before these babies fail, so I'm filling my plate with those things.

On a sad note, we lost our golden retriever puppy last month.  My 11 year son was walking the dog, and the dog chased after a squirrel, getting loose from my son's grip.  The dog chased the squirrel right onto a road, where he was hit by a car.  Luckily my son was too far behind the dog to see the accident, although he did come on the scene moments later, and he did hear the thud.  The dog died at the emergency vet about 3 hours later.

It was a rough week at our house after that.

Still, life goes on, and although my kids miss the dog, they are learning to come to terms with it.  We had some lovely people do lovely things for us, including giving us a book about dog heaven, and the DVD "All Dogs Go To Heaven".

That is one friggin' weird show, I tell you.  Nice of our friend to loan it, but still.  Weird.

I'm writing this entry at 1am because I'm having a hard time sleeping.  Insomnia, it's the worst.  I usually get it when I'm stressed, and unable to mitigate that stress.  Such is the case tonight.  Again, there are some heavy things on our plate---not bad things, thank goodness, just heavy, but it makes us busy and, yup, a little stressed.

(Just re-read that last sentence and realized that it sounds like I'm suddenly speaking in the royal "we", or talking like Gollum, "yes, we're stressed precious, so stressed by the nasty kidneyses...". I'm not trying to be royal or Smeagol-like, I promise, just referring to the things my family and I have going on.)

(Now that sounds like I'm being cryptic about trials.  I'm not.  Our lives are not cryptically difficult, they are normal and ordinary.  My kids are healthy and happy, just busy, and I'm mostly healthy and maybe mostly happy, depending, but I too am busy with normal ordinary stuff.)

(This entry is rapidly declining in literary value.  I'm going to bed.)





Saturday, October 05, 2013

Liver update

I don't have gallstones.  My gallbladder is just as pretty as can be, which is nice.  My liver, however, has an 8 cm cyst on the right lobe, which I kinda knew, but didn't know the exact dimensions. Also, it's grown about a centimeter since the last ultrasound, which was a few years ago.  So this disease, it progresses.

The pain is gone, though, which I suppose is the good news.  Dr. Steinman said my description of the pain is pretty typical for patients who have liver cysts, and that the cyclical nature of the pain is also typical.  He says it has to do with cysts pressing against nerve roots of the different organs.  I've never heard of organ nerve roots, and, when I went back to the GI guy (I forgot to cancel my follow up, and figured a no show would be just as expensive as just going and saying, 'It's just PKD, yo'), it was clear he had no idea what I was talking about either.  Is he just massively under-informed, or is Dr. Steinman pulling nerve root terms out of his butt?

Either way, things don't hurt anymore, so I guess it doesn't really matter.

Lots and lots of people have lately been asking me about my health.  I finally said to one person, "Wow, am I looking rough these days?"  I always wonder how much people really want to know, and how much they are asking just to be nice. I don't mind people asking just to be nice---after all, it's nice!--but I often find myself gauging how much to tell them, or if I should simply say, "Oh, it's fine.  I'm fine."

Which I am. I'm fine.  I have softball sized cysts growing all over everything, but for the most part, I feel fine.  Some days I feel great actually.  This particular week I don't, which I guess is why I'm looking rough. I'm dragging a bit, as it has been a long and tiring week, and my husband is out of town, which means I'm not getting good sleep.  I joke that I'm like a kid with a favorite blanket---I just can't sleep without my husband.   The good part is that he says he can't sleep without me either.  I don't know if that's healthy or just super co-dependent, but either way, we need each other.

He'll be back tonight, and we'll snuggle down together and sleep in as late as our devil dog will allow.

I so hate that dog.


Monday, September 02, 2013

Liver cysts

My stomach hurts.  A lot.  It hurts right under my breastbone, and when I press on it, it feels tender.  But I'm not sure if it's tender because there is an infection/ulcer/gallstone/alien parasite, or if it's just because my liver is coated, yes, COVERED in cysts.  That was a revelation from my first MRI at Beth Israel.  It was shocking, even as I was prepared for it.

After dealing with this pain for a few months, it's time.  Time to get it checked out.  Sigh.  I could go to my nephrologist, but I don't know if she can help if it's stomach/gall bladder related.  I could go to a gastroenterologist, but then I'd have to explain why my abdomen is such a mess.  (My gyno, for example, was shocked when he palpated my abdomen, and said he was glad I told him that my kidneys could be felt anteriorly, because otherwise he would have suspected serious uterine growths, or something else crazy.  He also said giving me a hysterectomy would be a real bitch.  Okay, he was more professional than that, but that's what he was thinking, I promise you.)

I mentioned it to my GP, who happens to go to church with me, and he said, "See me first."  Sigh again.  Not that I'm opposed to seeing my GP, it's just that I'm trying to minimize my interaction with doctors.  Because I hate them.  I mean, not as individuals.  They're nice enough, I suppose.  I just hate spending my life in doctor's offices.  It's a drag.

So, anybody else have painful liver cysts?  Because if it's not liver cysts, I can imagine a long line of testing with no light at the end of the tunnel, and a lot of surprised doctors along the way who have barely heard of PKD, much less palpated kidneys anteriorly.

Sigh.

Sunday, May 19, 2013

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.

Friday, May 03, 2013

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!

Friday, April 05, 2013

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.)




Thursday, April 04, 2013

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.