Saturday, July 19, 2014

Slip 'N Slides are a bad idea

We recently took an awesome vacation with my in-laws to a dude ranch in Wyoming.  I can't think of anything I would rather do, and the experience met and exceeded my expectations.  I'm pretty sure I'll never have another vacation like that again (unless, of course, my in-laws decide to go again, in which case I would jump up and down and say, "WOO-HOO!").  Excellent times, my friends, excellent times.

Besides the horses, though, there was an afternoon of wild games.  It was silly stuff, like putting on wet clothes and running with a full bucket of water, launching marshmallows and catching them, and moving cotton balls from one bowl to another by sticking them on your nose with vaseline.  (I particularly excelled at this event, by the way.  Who knew I had such hidden talent.)

There was also a Slip 'N Slide, a big sheet of plastic set out on the grass, slicked up with water and dish soap.  We all got a big dose of dish soaps on our stomachs, and people looked like penguins splashing down the plastic on their bellies and sliding around like mad.

It looked like fun, and I wanted to participate, not only for the fun factor but because I'm not always good at just playing with my kids.  I'm good at scheduling stuff for them, I'm good at getting them to those places, I'm good at taking them to the library, reading to them,  keeping them (sort of) clean, and I love snuggling with them, but playing with them?  Sometimes I'm at a loss.  I know, it should be easy to play with kids, but kids often make up complicated rules to games and have shocking amounts of endurance for said games, and I'm often not up for the task.

But this was simple and straightforward fun, and the kids were having a ball, so when it was my turn to do a penguin impression I soaped up my belly, ran towards the plastic, and took the plunge.

Oh.  My. Gosh.

I landed on my belly like it was a ton of bricks.  The fall knocked the wind out of me, I slid about 3 inches, and I literally moaned with pain.  I couldn't stand, so I got to my hands and knees and crawled off to the side to make room for the next person.  I stayed on all fours for a moment, but stood up a minute before it was really comfortable so the people watching (yes, the people, ALL THE PEOPLE) didn't get too concerned.  I stayed in a crouch for a little longer, trying to get my breath, and then sort of hobbled over to my husband.

"That was a bad, bad idea," I said.

I was in pain for the rest of the night, and I wondered if I had ruptured a cyst.  I kept checking my urine for blood, and luckily it was clear, but wow did I hurt.  I took some Tylenol,  moved a little gingerly the rest of the night, and went to bed early.  In the morning, I felt better, and was relieved again to have clear urine.  No lasting damage done.

But I have to say, lesson learned.  When you have an umbilical hernia and liver cysts and kidney cysts and kidneys the size of nerf footballs, launching yourself onto slick plastic belly first is possibly the dumbest thing you could ever, ever do.  Pick a different way to play with your kids.  And stick with riding horses.

Tuesday, June 10, 2014

On Looking Pregnant and Being Cool

Recently, I read this post over at PKD Will Not Beat Me.  I related to it so much.  People don't ask me if I'm pregnant--I'm 5'9", so I have the blessing of having a lot of space for my overlarge kidneys.  But I feel like I look pregnant, and I'm so over having an umbilical hernia.  I mean, I guess it's kind of cute to have an outie belly button when you are pregnant, but otherwise, it's just kind of gross.

(Side bar:  I realize I talk a lot about my belly button on this blog.  Sorry.  I guess I obsess about it a little bit.  But don't worry, I'm not crazy. Even *I* know that a belly button obsession is very, very odd.)

But I loved what this woman had to say about embracing her body, about just letting it be what it is.  I have a hard time doing that sometimes, only because I think what is happening to me is, well, to be frank, kinda ugly.

There are some things I've always hated about my body that tortured me in my youth---I have small boobs and white skin and I'm a little bit gangly but also always felt like my butt sagged.  Scratch the surface of any women's gathering, and you'll find most women have some kind of complaint about their bodies---boobs are too small/too big, thighs are too fat, stomach is too round, whatever.

But there is a lot that I have always liked about my body.  I have nice legs, I've been blessed with thin genes, my skin, while white, has had the occasional zit but otherwise is fairly clear.  And over time, with age, and with a husband who genuinely thinks I'm hot, I've come to be very comfortable in my own skin.  When I started really exercising, and working out, that comfort grew as my body hardened and became strong.  It's really awesome when you feel strong.

But as my waist disappears and my liver cysts push out my stomach and my kidneys make my abdomen get lumpy and for the first time in my life, some clothes just don't fit right, I get more and more discouraged about the way I look.  It feels like tangible reminder that there is something going on in my body that I can't control.

So this woman is a great example of somebody who has felt discouraged and out of control and has decided to just embrace the good parts and live life because you can't control most things in this world anyway so you might as well enjoy what you've got.  And I've got so much.  So so so much.

Also, my husband got me a punching bag for Christmas, and it is awesome.  So I may look about 3 months pregnant, but after working on that bag enough, if you ASK me if I'm pregnant, I'll be able to literally punch you in the throat (*).

See?  Feeling strong.  It's awesome.

(* I don't condone violence, and I have never and would never ACTUALLY punch somebody in the throat. Just thought I'd put that in there in case somebody thinks I'm a terribly violent person and calls CPS, or something.)

Friday, May 16, 2014

Mom's Night Out

This is not a post about PKD, but my tagline does say this blog is about motherhood (does it?  It does, right?  And something about a dog?), so I thought I'd write about the new movie, Mom's Day Out.

I didn't have high expectations for the movie.  And ultimately, it delivered pretty much what was expected: some frazzled moms go out for a well deserved night on the town, hijinx ensue.  The hijinx are a little ridiculous, and kind of over the top (an entire fleet of biker gangs and a police force join together to find a baby, which, by the way, happens to be in the house NEXT DOOR, which isn't a spoiler, because the audience knows this way before any of the characters do).

 It was when the fleet of bikers show up and one of them is driven by one of the moms'  husbands, and she DOESN'T say, "Um, what the hey nonnie nah are you doing on a motorcycle with Trace Adkins in his BIKER GANG instead taking care of our three children?" and instead embraces him with the tender affection that is usually reserved for a spouse you haven't seen for days instead of, say, hours, that I said to my friend, "This is officially silly."

Which is okay, because you go to the movies with your friends to see silly things because really you are mostly interested in escaping your life as a mother, not because you don't love your children but because a little time away from them is refreshing and actually makes you a better mom and silly escapist movies are a great way to do just that.

It was the parts of the movie that weren't silly that sort of blew my mind.  The part where I sat there and thought, "I have said those exact words.  My children have done those exact things.  I have felt those exact feelings."

Is it awesome that the filmmakers nailed the nuances of being a stay at home mother, or a little creepy?

And during the scene when the husband comes home and the camera pans a destroyed kitchen and a catastrophic mess in the house and a trail of candy wrappers and opens a closet to find his wife finishing off an entire bag of Lindt chocolates while she watches some inane video of a eagle live cam, I laughed but inwardly thought, "I have been there.  Exactly there."

Lemme just tell you, people, if you find a momma hiding in the closet eating chocolate (or curled up in the bathtub crying uncontrollably, or eating an entire cake BY HERSELF), that's not time for laughter.  That is time for some intervention, my friends.

And maybe more cake.

My kids are getting older, and easier.  They can pee and poop on their own, and as soon as my daughter loses her morning drama and stops being traumatized every time I ask her to tie her own shoes before breakfast, they will both be able to officially, completely, totally dress themselves head to foot unaided  (although asking my daughter to not be dramatic in the morning is a little bit like asking my dog not to fart at dinner time, which is to say, I may be tying her shoes until high school).   There are no dirty diapers, no big diaper bags, I don't pack snacks anymore, and for the most part, there are no more major messes.

(Except my daughter's room, because she's like a squirrel--she hoards everything.  Seriously.  There was a whole conversation between her and her father that involved her freaking out after he cleaned her room and going through the trash bag that held her "treasures".  I died in fits of laughter as I heard him say, "But that's BROKEN!" and her screaming back, "But I want to SAVE IT ANYWAY!" and him saying, "But it's TRASH!" and her wailing, "But I LOVE IT!")

So being a mom is getting easier, in some ways.  In some ways, it's getting harder.  The stakes are getting higher.  My son is in middle school, which is a jungle, and I pray for him every day that he can navigate it and come out on the other side with as little bruising as possible.  His choices are no longer just about what he wears or who he hangs out with.  He has some big stuff coming up, big years, and those years are scary.  Great and wonderful and exciting, but----scary.

I'm not sure where this post is going, other than to say that being a mother is crazy making and wonderful and beautiful and painful all at once, and watching all of that being portrayed on the screen was kind of---unexpected.

And it made me want more cake.

P.S. I'm pretty sure my dog has PKD.  (See, there is some PKD in this post after all!)

Tuesday, May 06, 2014

Post cataract world and other random crap

I got my cataracts removed in February. Wow, that was, well, not what I expected at all.

One of the things I never knew I really counted on was my close vision.  There was never anything I couldn't read---if I brought it close enough, I could read it.  The smallest print, the tiniest words, nothing was unavailable to me.  I'm realizing now that it was kind of my superpower. My husband laughs at me because hello, without glasses or contacts, the world was almost entirely unaccessible to me past about 8 inches (not even jokeing.  Myopia, bitches).   But it seems logical that if the broad world is unaccessible, it makes perfect sense that I would revel in what I *could* see, what my eyes *could* do unaided.

Cataract surgery makes it so seeing that close is impossible.  It has to do with the lens implant---it's not flexible, like a real eye, and so it's harder to focus close in.

This, my friends, blew my friggin' mind.

I was completely unprepared for it.  I mean, the idea of reading glasses sounds innocuous enough, but to actually be unable to read is sort of panic inducing for somebody who has always depended on bringing things close.  Again, my husband tried to get me to focus on the positive---after my right eye was done, I could DRIVE without aids---but it threw me for a huge giant loop not to have that close vision anymore.

My doctor anticipated that, and suggested we do the left eye with a close lens, something she called mono vision.  My right eye would be corrected for distance, my left eye for close, and my brain would make up the difference.

Yes, please, let's do that RIGHT NOW.

So she did, and it's worked out pretty much the way she intended, although there are still some gaps in my sight that I don't like.  For example, I can't thread a needle anymore---it's too small and requires too much close focus, even for my close eye.  I have to put on reading glasses for that.

I can't see ticks anymore on my family's skin, which may not sound like a big deal if you don't live where we live, but we do tick checks almost every night, and for good reason.  We live in tick heaven, and those babies are dangerous.  Just yesterday my husband found one in an, ahem, unmentionable place, and he couldn't reach it and needed my assistance.  I had to PUT ON MY GLASSES to get the damn thing.  The way I see now---it's completely different.  And I'm not sure I love it.

AGAIN, yes, I know, I can see without aids, and that's kinda huge for a gal who has been wearing coke bottles on her face since the second grade.  But I guess I kind of expected perfect vision.  I'm still struggling, which I wasn't prepared for.  Ah, the loveliness of high expectations, dashed against the rocks of reality.

Anyway, I see the doctor again this week, and I have glasses that are actually pretty awesome when I wear them at night to drive.  So, bit by bit we move on.

Speaking of moving on, the study with Dr. Steinman is concluded.  I'm now officially on my own in terms of my medical care, and need to go back to my local nephrologist. I haven't done that yet, only because I can't quite muster up the energy to make another doctor's appointment.  After the flurry of doctor stuff in January and February with my eyes (and my daughter's eyes--yup, she had surgery in March), voluntarily calling another doctor kind of makes me want to curl up in a ball and hide in my bed (which I did all day yesterday, actually.  It was a nice day.  Everybody needs a day off from the world sometimes.  Especially if that day includes a Sherlock marathon.   Benedict Cumberbatch.  Yum).

Whine, whine, whine.  Let's see, what's good around here?  The school year is coming to a close, and I think we're going to have a great summer.  I am trying to work towards doing a new kind of speech therapy that involves horses, which is crazy cool.  I have to find a mentor that can supervise my treatment hours, and I have to do some more classwork, and take some tests, which means that this whole idea may come to fruition a few years out, but if not when, now?  As my mother said, I can't do it any younger, so even though I'm a little late to the game, better late than never.

The Renal Support network sent me a form letter asking for submissions to their essay contest again.  I'm torn.  In 2012 I got an honorable mention.  Could I do better this year?  What if I do worse?  My writing is a little rusty--anybody who follows this blog (I think there are, like, 10 of you) knows that I've taken a break from blogging.  Not for any particular reason, it's just that sometimes I have less to say than at other times.

I also had another mommy blog that is now defunked, again, not for any particular reason, I think we all just said everything we had to say.  That, and our kids got older, and writing about how  your 12 year old had a meltdown because his basketball team lost their game and his math teacher scolded him for doing a math problem wrong is, generally speaking, less entertaining than when that same said 12 year old streaked naked through our neighborhood at age 3 and peed on our neighbor's lawn.  I mean, a naked 3 year old peeing on a neighbor's lawn? That's blogging comedy GOLD, people.  A 12 year old dealing with big boy problems, less so.  Plus, my kids are old enough to be picky about what I write about them.  They don't want the internet to know about these things.  Public urination as a toddler? That's fine.  Stuff that their peers can read about them now?  Again, less fine.

Anyway, I did spend the morning writing an essay for the contest.  I sent it to my husband to read/shred, and we'll see if I want to submit it.  First place is $500.  Seems like that's worth it a shot, right?

I'll keep you posted.

 No, really, I will.

I swear.

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.