Living With PKD

I'm a crappy patient

2012-02-13T19:11:00.000-08:00

I hate being laid up. Like, HATE IT. I am inherently lazy, and usually am not generally opposed to a day spent sort of lounging around. I do it more often than I should, really.

But FORCED lounging, well, the only good thing about that is that I can make my husband do the dishes without feeling guilty about it.

To top it off, this weekend I got pinkeye, compliments of the 4 year old carrier monkey that lives with me, who brought it home from preschool. Being prohibited from driving AND having a contagious condition? The universe must be seriously laughing its guts out right about now.

And I'm discovering that I'm not really a very nice person. I mean, it's all well and good to be cheerful when things are fine, but when your foot hurts and your body goes stale from inactivity and your mind goes to mush because it's too hard to concentrate on anything real when you are in pain and you can't see past your eye boogers, it's harder to maintain a cheerful exterior.

In short, I'm becoming a raging emotionally unstable banshee from hell.

This morning, I broke down in the kitchen upon discovering that my daughter had poured the last of the milk into a large cup, just for fun. There was no mess to be cleaned up, only room temperature milk that could still be used for cereal. Normally I would have just packed my kid up and gone to the store, but since I can't drive, I knew that there no more cold milk to be had until my husband got home from work that day.

It was too much. I started to cry, and asked tearfully why my daughter didn't put the milk back in the fridge to keep it cold. She got confused, and then worried, and then started bustling about, saying things like, "I can put this milk back in the fridge, mom!" When I resigned myself to eating cereal with warm-ish milk, I still sat there crying into my Captain Crunch. Little Sister continued to be concerned, and offered me her leftover milk from the cereal she had eaten about an hour before, and she said, "I'll put THIS milk back in the fridge, and in 4 seconds, it will be cold again!" I told her not to worry about it, that it was fine, so she left the bowl next to the fridge and said, "It's just riiiight here, Mommy, if you change your mind." She said it softly, soothingly, like she was trying to calm a crazed animal.

She then came back to the table and awkwardly stood there, looking at my dripping face, and finally whimpered, "Just please stop crying, Mommy!"

It struck me then that I'm not sure if in her short life, she's ever seen me cry. I don't know if that's a good thing or not, but it did make me feel a little sheepish that the first time she sees her mother break down in sobs is over milk. And not even spilled milk at that.

Tonight I unleashed a storm of fury at my 9 year old who refused to do his homework. Because nothing motivates a kid to do his math like his mom throwing a bigger tantrum than he did.

I'm just sayin', today MIGHT have been a bad parenting day.

I think I'll take a Vicodin and try again tomorrow.

Grace under fire

2012-02-01T07:26:00.000-08:00

I have always admired my grandmother. She lived well into her 90s, and was bedridden the last year of her life. Her hips, which had been replaced earlier in life, basically crumbled away, and she was unable to walk. She handled her situation with grace and composure, and I never heard her complain about something I'm sure was fairly painful.

I've learned this week that I most definitely do NOT take after her.

I broke my foot on Saturday. I wish I could tell you that I did it in some awesome way, but really, I just misstepped and rolled my foot in a ditch at the end of the a driveway. I was carrying Little Sister, and I'm sure I compensated somehow so as not to drop her, and ended up with two avulsion fractures in my foot. Basically, that means that I snapped some ligaments, and they took small pieces of bone with them. Nice.

In the ER, things were moving slowly, as would be expected. When they x-rayed my foot, and twisted it in such a way as to get the picture they needed, I yowled in pain. When we got back to the room, there was a pain pill sitting in a cup, with water next to it. I asked my husband to give me the pain pill, but he decided he should ask somebody. The nurse and the doctor came in, and the nurse said, "I'll give you the medicine after the doctor explains things to you." I said, "Could you please give it to me now?" I wanted to say to her, "I don't know if you know this, but BREAKING A BONE HURTS LIKE HELL", but I refrained, thinking that being a nurse and all, she would probably know this fact. But she diddled, hemmed and hawed, and finally I said to my husband, "Just GIVE IT TO ME!" and the nurse only acted when my husband picked up the pill himself and got ready to give it to me. I also wonder if me closing my eyes and banging the wall with my fist in an effort to take my mind off the pain gave her pause. She huffed and puffed and said "Fine, I'll give it to her."

Well, thanks, nurse lady, thanks very much.

When she left in a huff, the doctor grinned at me and said, "She's having a bad night."

Really? Worse than mine? She broke her foot in two places too?

(See? Not gracious. Not gracious at all.)

(I actually didn't say that, though. Just because I'm not gracious doesn't mean I want to piss off my doctor. Plus, I'm kind of a coward when it comes to confronting folks, so I just usually say mean things about them in my head.)

While I sat in the hospital bed, enduring, well, the hospital, DH kept taking pictures of me on the iphone, just to show me how bad I was scowling. Apparently I'm funny when I scowl.

How I wished I had had something to throw at him.

I now have a storm trooper boot on my foot, something that will be my companion for the next 4-6 weeks. It could be worse. I could have a cast, or need surgery. As it is, I just get to hobble around for a month. But since it's my right foot, it means I can't drive for that long, either. Oh, the joy. It's like bed rest all over again, except at the end of it, I don't get a baby, I get a foot. Which is not nearly as cute.

The good news, though, is that UNLIKE bed rest, I have some excellent drugs to keep me company. And it's hard to hate the world when you're blissed out on Vicodin. Vicodin's my favorite.

It's like a rite of passage

2012-01-28T12:44:00.000-08:00

I went to Trader Joe's yesterday. Love that place, and it gave me lots of good ideas for some vegetarian meals. I'm not going fully vegetarian again, but you can't argue that veggies and beans are good for you. So I thought I'd make more of an effort to incorporate some of our favorite vegetarian meals in our regular diet again this year. I went to our old standby, chickpea masala, with some naan bread from Trader Joe's. I got it all set up, put it on the stove on simmer, and headed outside in the unseasonably warm twilight to help my 4 year old ride her bike.

I burned the beans.

Again.

And there's nothing quite like the smell of burned beans.

Someday, someday, I'll get it right.

Eyes

2012-01-25T15:58:00.000-08:00

I have cataracts. Have I mentioned that? I also have astigmatism and some major near sightedness, which means that basically, my eyesight blows.

I was updating my contacts prescription as well as getting new glasses today, and the doctor was explaining all of the various things wrong with my eyes. I asked him if my cataracts are related to my PKD. He shrugged and said that such a thing has been postured, but never proven. He also said that my particular type of cataracts, something called "posterior subcapsular cataract" (PSC) is not necessarily congenital, and can be related to kidney problems, but is more often caused by steroid use.

Now, before you ask, no, I'm NOT actually a professional baseball player looking to beef up my home run average. I was briefly on an inhaler for asthma my early years in college after a freak asthma attack during an outdoor basketball game. I used my inhaler sparingly, mostly when I exercised outside (and since I lived in Boston for so long, you can imagine how often THAT happened). I had the most trouble whenever I went back West, where I am allergic to pretty much anything that grows out there. Also, the winter inversion in Salt Lake City, where my family is from, doesn't help much either, as evidenced by an attack I had there once at the top of a ski slope.

(And, for the record, husbands who have LEFT you on top of said ski slope are not very helpful either, especially at the bottom of said ski slope. Neither is saying, over and over, "Just come down! You're fine!")

I gave the doctor a shortened version of this history, basically saying, "Yeah, I had an inhaler for a few years, but hardly ever used it." He shrugged again and suggested that it might not matter how often I used it, if I had PKD at the time (which I did), my body could have just processed the steroids differently, because people with compromised kidney function could react differently to various drugs.

Neat.

We talked a little bit longer, about how I still struggle with my eyesight, and how even though living a lifetime with myopia has given me some cool compensatory strategies, I am not crazy about how my contacts are correcting my sight. I'd like to see better. He said, "Frankly, with your issues, I'm surprised you see as well as you do."

He went on to tell me that not only are my cataracts sort of uncommon, but that MY cataracts, specifically, are atypical of PSC. They're not placed where the typical PSC would be. He said that he can't really tell me how my eyesight will progress, either for better or for worse, because usually, these kinds of cataracts get bigger with time, and mine are not only in the wrong place, they haven't progressed at all since the last time I saw him. Which happened to be 4 years ago, because I may have gotten a little behind in my yearly eye exams.

So he said something along the lines of, "Your issues are just very atypical", which I pretty sure is doctor speak for "Lady, you are messed. up."

And WHO KNEW my mess could even impress an eye doctor? Nephrologists and ER docs, pshaw, no sweat. But an eye doctor? That's brand new territory, folks.

So I asked him about surgical options, and he shrugged AGAIN. I don't mean to imply that this doctor had no answers, it's just to illustrate that "shrug" seems to be the medical default in my case. We talked about Lasik, and cataract surgery and all that. I have to decide if Lasik is worth me undergoing to knife (laser?) twice in my life for my eyes, in case I need cataract surgery in the future, or if I'm just willing to shell out a coupla hundred bucks a year for the next little while for contacts and glasses that kinda sorta basically fix my eyesight except driving at night when I'm tired and there are all kinds of glares on the road to mess a be-cataracted sister up.

And my insurance didn't cover a nickel of this whole thing. Thanks a lot, Obama.

(I actually don't have any idea how Obamacare affects my insurance, it just feels good to blame somebody.)

Webinar

2012-01-24T18:09:00.000-08:00

Just finished listening to the PKD Foundation's webinar about recent research. Interesting complex stuff.

2 things Dr. Cowley said that we can do right now, while all this cool research is going on:

1)Drink lots of water to reduce kidney stones, UTIs, and the production of vasopressin (I had to google that. I suggest you do the same, because I doubt I can explain what it means).

2)Decaffeinate

Dr. Cowley didn't say these were magic bullets, or really that there are definite clinical implications for these two things, but common sense and logic has led folks to these conclusions.

Noted, Dr. Cowley. I'm off to drink some water.

On being very bad at peeing and eating

2012-01-24T12:12:00.000-08:00

When I got diagnosed 6 years ago (yup, my anniversary is just around the corner-Jan 31st, 2006), my mind leaped back to a random experience I had with a friend in high school. He and I were hanging out, and I think we went to a movie. The details are hazy, but I remember making fun of how often he had to go to the bathroom. I'm not sure why I thought that was funny, or even something to discuss, but there's no accounting for teenagers, I guess (although here I am, twenty years later, still talking a lot about pee, so maybe some things never change). I DO distinctly remember him coming out of the bathroom, though, and pointing at me and saying something like, "I drank a LOT at that movie, and it's not unreasonable that I have to pee! There's nothing wrong with me, maybe there's something wrong with YOU, didja ever think of that?"

At the time, his statement gave me pause. I wondered if there WAS something wrong with me, because it was true that I didn't have to pee as much as my friends or family did. My mother was constantly asking me on roadtrips if I had to go, and whenever I said "No", she dragged me to the bathroom anyway, "Just to try". As a mother now, I appreciate why she did it--kids are notorious for telling you that they don't need to go, only to break out the tinkle dance 30 minutes later. But the truth was, I almost never had to go. And NOW I have to wonder, is my lack of peeing because of my PKD? My last 24 urine sample was so pathetically small that Dr. Wang said, "If I didn't know it was you, I would say you did it wrong."

My friend was right. There was something wrong with me.

Fast forward 20 years to present day. I can't tell you how many times my husband has come home to find a grumpy wife who is having a hard time dealing with the day. At these times, he invariably asks me, "What have you eaten today?" And invariably the answer is something along the lines of "One bowl of Captain Crunch and a piece of celery." And when my beloved asks me WHY on earth I haven't managed to feed myself during the day, I say, "I forgot". Or, as is most often the case, "I'm not hungry."

He points out that I must be hungry, because no sane person can get through an entire day fueled by Cocoa Puffs and be happy about it. And then when I do sit down and eat, I find that I'm ravenous, but quickly satiated. I remember one time I was at a restaurant with friends, and we were talking about sharing an order. A friend said, "Don't worry about Heather, she hardly eats anything." I looked at her at surprise and said, "Why do you say that?" She sort of laughed and said, "I've seen you eat."

When my husband first saw the MRI pictures of my kidneys, he said, "That's why you're never hungry. Your kidneys are so huge they are probably pushing on your stomach, messing up your hunger signals. It's like you have to tell yourself to eat, because your body can't let you know what you need."

I don't know if he's right. I've never heard of this symptom as being related to PKD, but I suppose it makes sense. My kidneys ARE huge, and they do take up a lot of space in an area where space is at a premium, so it stands to reason they would push up against anything that would give. It may also account for why eating when I was pregnant was so very hard. I would be nauseous, starving, desperate for food, but I could barely eat. Ensure and Boost saved my life. And I mean that very literally.

But I just don't know what is related to PKD, and what isn't. It's like when I was running the other day and my foot went numb. It hasn't happened since, and my shoes are better broken in, so, again, it stands to reason that it was just a side effect of running in new shoes.

But with a disease like this, my mind always goes to the kidneys. Even if they're just innocent bystanders to bad shoes.

At least I'm not blaming the rain. Or my husband. Or my spleen. My spleen's too pretty to cause problems.

P.S. It's 3:30 in the afternoon, and the only thing I've had to eat today is a thing of yogurt and a Gatorade power-up drink that I drank right before my run, which I pushed to 4 miles today. I should probably go do something about that.

To post or not to post

2012-01-21T19:01:00.000-08:00

Today I spent some time on the PKD Foundation's FB page. I'm so glad they have this page, because 1)it's a sign that the PKD Foundation is moving with the times (seriously, when I got diagnosed, nobody I talked to at the PKD Conference had even heard of a blog) and 2)because it's a great dumping ground for good stories and questions and stuff. Plus, you can connect with other PKD folks in a non-threatening, non-creepy way. (Unless you ARE threatening and creepy, in which case, please stay away, thanks.)

Anyway, today, I came across something fun. Somebody has put up an AWESOME picture of some polycystic kidneys:

They are kinda gross, so don't click if you don't have the stomach for it.

I "shared" it on my own personal FB page, hoping that it could explain why you can't just remove the cysts, which is one of the non-stupid questions I often get. I mean, it seems logical, if cysts are growing on something, why can't you just go in the and lop them off?

This picture, gross as it is, explains why that doesn't work. Worth a thousand, no, a million words.

Even if the million words are "ewww", said a million times. I'm cool with that.

But I thought about it for two seconds, and took the picture down from my page. I figured there was no way that I could put something like that up without a warning for my peeps. It's kind of like the time when another friend posted a picture of a gnarly cut on her husband's leg that was, granted, stapled up and stuff, but was also red and oozing. I'm definitely not the squeamish type, but it was just so in my face in my newsfeed, I was initially taken aback.

So I figured I would spare the poor souls who don't have the stomach for shocking kidneys.

But I think I'll put up a link, though, and see who clicks in. I bet I could tell you EXACTLY who would get excited about geeky anatomy stuff like that.

I know I do. Get excited about anatomy stuff, I mean. Yes, I'm a geek.

Crappy Genes

2012-01-15T19:28:00.000-08:00

I have a twin sister. We're not identical. She was diagnosed with Type I diabetes, about 2 years ago.

My older sister just found out that she is insulin resistant, which explains some of her extreme reactions she has to sweets. My mother was also told she was mildly insulin resistant, and was heading towards Type II diabetes, which is different than Type I diabetes, but in the end means that my mother and my twin sister often order the same kind of food at a restaurant.

Of course, my mother gets to eat the food without the silly nuisance of an insulin injection, unlike my sister, who pretty much has to shoot up every time she puts anything in her mouth that isn't an egg.

And please, before you ask, let me just say, no, my twin sister is not fat (5'7" and pushing 100 pounds soaking wet), she didn't get the disease from drinking too much Diet Coke, and no, diabetes is not like AIDS. (These are real questions. Not even joking. People are seriously dumb.)

I come from a family of 8. 6 kids. When I was diagnosed, every female in my family immediately got tested. Every male in my family refrained, including my father. My mother pushed my father to get a kidney ultrasound at his conveniently scheduled yearly physical, and it was then that we found out that I got my disease from him.

My brothers haven't been tested for PKD. Part of it is that they are worried that they would lose their health insurance if a pre-existing condition is discovered. I don't know how that all shakes out now with Obamacare and everything. Maybe that's not an issue anymore. But the rest of it, I think they just don't want to know. Even when I tell them that any of my father's children have a 50% chance of having PKD, and the fact that my 2 sisters don't have it considerably ups the odds for them.

Plus, it's not exactly a cheerful conversation. I mean, how do you bring it up--"Hey, don't you want to know if you're going to DIE??" My family would much rather talk about politics and religion than kidneys. (Although you'd think politics and religion wouldn't be cheerful conversations either, which is sometimes true, but at least in my family, the conversations are never boring. Unless my husband is talking about contract law.)

But regardless of the stimulating conversations, between the kidneys and the pancreases (pancreai?) it seems my family didn't exactly win the gene lottery, did we.

Still, I suppose it's not all bad. I did inherit long legs and a musical ear. My husband tells me those count for something. Especially the long legs.

New Year, new shoes, and a new symptom

2012-01-04T08:04:00.000-08:00

I bought new running shoes on Monday. Because it's a new year, and because I'm predictable, of course I've made fitness goals. You know, like everybody else on the planet. And with new goals come new shoes, because I've found that nothing is as motivating for fitness as shelling out a chunk of change for shoes. It's all about putting your money where your mouth is.

So yesterday I tried out the shoes. They are Saucony brand, which is the brand of shoes I was using previously. Those shoes treated me pretty well, except they started giving me blisters as they broke down, so it was time to get new ones. The store didn't carry the same shoe in my size, so I picked another type of Saucony shoe. I had my kids with me, so I didn't have time to put them on, but again, with experience, I knew I liked Saucony, so I wasn't too worried.

Last night, I gave them a spin on the treadmill. My socks were slipping, which I knew would give me a blister on my heel (it did, a small one), but other than that, they felt good.

And then my right pinky toe went numb.

I ignored it, and kept running, wondering if it had anything to do with my hamstring, which is STILL bugging me. It's been almost a year and a half, HOW can it still be bugging me? Sigh. But like I said, I kept running.

Then my 4th toe went numb, and then my 3rd and my second toe. Then the numbness spread across the middle of my foot. I slowed down to a quick walk/run, but it didn't help. I also realized that as it was going numb, I had started limping in an odd way, which I'm sure is the reason my whole body feels jacked up this morning.

But hello, what is going on? My other foot felt totally fine, so I don't think it's the shoes. And my feet have been going numb on and off all week, since Sunday, so maybe there is something else going on independent of the running, and I just exacerbated it on the treadmill. Maybe my spinal nerves are slowly getting shredded, and it will only be a matter of time before I lose feeling in my feet completely.

(Sorry, I'm kind of a "worst case scenario" gal sometimes.)

I'm going to hit the bike today, so see if that will help. But at this point, I'm wondering if I'm doomed to walk the earth, out of shape and numb.

Kinda like a piece of meat

2011-12-30T16:48:00.000-08:00

I had a massage the other day (yes, it was lovely, thank you so much for asking.) I told the massage therapist that my hamstring was still bugging me (which it is, and at this point, I'm beginning to think it always will), and so she said she'd see if she could find some trigger points to release some of the tension, or pain.

When she got around to my hamstring, I told her where the pain was, and well, let's be real, the hamstring originates (or inserts, I can't remember which) on the ischial tuberosity, which is, to be plain, your butt. The medial side of your butt, to be exact, which means that massaging it (or diagnosing the tendonitis) means you get pretty close to, well, parts that not everybody gets to be up close and personal with.

This therapist asked permission to massage me there.

I was a little surprised she asked my permission. It was something new. Seriously, hardly any doctor asks permission if he can poke and prod, and frankly, it never occurred to me that they should have to. Which says less about them and more about me.

It means I've officially accepted the idea that I am a piece of meat.

Don't get me wrong, I don't mean to imply that I have ever been mistreated by a medical professional. That has never been the case. By and large, I think doctors are competent professionals who care about what they do and the people they treat. I've seen some loser doctors in my time, for sure, but as a patient, I have been (mostly) treated with the utmost respect.

That said, my body seems to be fair game a lot of the time, and I've been more than one doctor's educational patient for the day.

And that's okay. It comes with the territory. I totally get it.

But it was nice to be reminded, just for a second, that I am more than the sum parts of my kidneys.

A pregnancy tale

2011-12-20T09:27:00.001-08:00

This month, my period started a few days early. More annoying than alarming, I didn't think anything of it. Then, 3 days after it started, it stopped. Completely. Done. Nothing.

For me, that's not normal. I've been pretty lucky in that I'm a regular gal, and my cycles are very, very predictable.

There has been only one time in my life that my cycles were all messed up, and it happened right after I got diagnosed with PKD. We were also trying to sell our house and move, which meant that I had to keep our house spotlessly clean every day or leave with an active 4 year old WHILE I was reeling from the diagnosis of a life-threatening disease. I went to the doctor, he looked at me and my chart and said, "Um, it might be stress." To which I responded, with my eyes bugging out and my mouth foaming with spit," I AM NOT STRESSED AND IF YOU DON'T IMAGE MY OVARIES TO MAKE SURE THEY ARE NOT EXPLODING I WILL KILL YOU!"

(Or something like that.)

(It might have been stress.)

I told my girlfriend about my not normal cycle (because, yes, women talk about their bodies. A lot. Especially when they're bleeding, because the crazy, it likes to share). She suggested it might be implantation bleeding. She suggested I google it, call a doctor, and get myself to the nearest CVS for a pregnancy test.

I shuddered. Pregnant? Really? No. Bad.

I'm on Lisinopril, you see, which is great for my blood pressure, but bad bad bad for a fetus. Like, KNOWN bad, not just maybe could be we need more study bad. So I googled implantation bleeding, and sure enough, it sounded just like my not normal cycle this month. I told my husband about it as we went to bed last night, and for a half an hour, we considered what it would be like if I was pregnant.

We got so excited he was almost ready to run to the store in his pajamas to get a test. He relaxed, though, when I told him it could wait until morning.

Which was a good thing, because this morning, it became abundantly clear that not only was I not pregnant, but that the early spotting I had was just a warm-up for the real thing.

And it made me sad. Not relieved, just sad. The half an hour when we thought I was pregnant was a pretty awesome half an hour.

I know, I know. Being pregnant is bad. I know the risks. I'm not stupid, nor am I reckless. My creatnine is up, my kidneys are as uncomfortable as ever, and my blood pressure doesn't respond well to procardia, the only blood pressure drug I know of that is safe for pregnancy. Pregnancy would mean 9 long, difficult months, most of them spent either in bed or in the hospital. It would mean my husband would bear the load of the child-rearing and the house-hold chores (not that I'm very good at those in the first place, but 1 person doing a half hearted job is better than nothing, as we rapidly learned the last time). It would be difficult all the way around, with an unpredictable, possibly dangerous outcome for me and the baby.

I know, I know, I KNOW.

It still made me sad.

The Reluctant Donor

2011-12-19T07:07:00.000-08:00

It's a book. My dad told me about at a family dinner the other night, and he said while he was reading it, my mom said, "Don't tell Heather about this book!"

Which means, of course, that 24 hours later, I had it on my Kindle and was halfway through it.

It's an interesting book. The literary snob in me says that it could have been edited better. Chronologically, she skips around a lot, which leaves the reader confused about timelines. I know she's trying to be interesting and thought provoking, but she doesn't pull it off. Not to be too morbid or anything, but I find myself wanting a spreadsheet of who died in her family when.

Still, editing issues aside, it's an intimate look into a family that has been devastated by PKD. The author's mother died of PKD, as did 5 of her mother's siblings. 6 out of 8 family members, dead from PKD. There is a picture of the family, and I showed it to my husband and said, "6 out of 8 of these people are dead from PKD." He said, "No babe, ALL of these people are dead because that picture was taken in, like, 1938." I laughed but his witticism did hit home an important point. This family suffered because in the 1950s, there was nothing that could be done for PKD. I mean, that's our party line now--no treatment, no cure--but that's not entirely accurate. Dialysis is readily available for anybody who wants it and needs it, and although I don't know the specifics of how insurance covers dialysis (yet), I know that nobody dies because a machine isn't available. Such was not the case when this family was trying to figure out how to beat the crapshoot of their genetics.

I'm at the part in the book where the author, the one sister of 3 who did not inherit PKD, is getting educated on being a living donor for her sister, a woman who is rapidly declining on dialysis. She's freaking out, and, well, I get that. My dad mentioned that he figured I already knew the horrors of kidney donation, and I told him I spent a difficult evening with Google once. I haven't really done much research since that one terrifying evening, and I what I know I've gleaned from the one PKD Foundation Conference I went to, 5 year ago, and my discussions with other PKD patients who have gotten transplants. So I know some hard stuff.

But I also know that even if research into PKD hasn't given us very much in terms of treatment options yet, kidney transplants are getting better every day. Dr. Perrone said (5 years ago at that afore-mentioned attended PKD Conference) that donation is easier, as they can now remove kidneys laprascopically (I have no idea how to spell that, but you get my drift), so recovery is faster and safer. Also, whereas Dr. Perrone also said that removing polycystic kidneys is a big deal and is hardly ever done, the University of Maryland is reporting success with bilateral nephrectomies for PKD patients.

I don't know if that is good news, but it sure sounds impressive. And I know that I would love to have these lumpy kidneys gone. They are totally messing with my plans for washboard abs.

(You know, because if it wasn't for PKD, I would TOTALLY have a six pack. Washboard all the way baby.)

(Why are you looking at me like that? It's totally my kidney's fault I'm not ripped. Excuse me while I go have a cookie.)

So if anything, this book has taught me that while the progress looks slow, we've actually come a long way. And my heart breaks for her family, having to struggle with a disease in a time when options were painful and few, and awareness of the disease was next to zero. What a lonely fight.

House MD

2011-11-06T20:34:00.000-08:00

PKD was mentioned TWICE this season.

(Season 6, that is. I'm catching up through episodes on Itunes.)

But how cool is that?

The first time, the patient didn't have PKD because no UTIs or flank pain. I yelled at the screen, "I've never had a UTI in my life! HA! So much for YOUR diagnostic skills!"

What? They can totally hear me.

The second time, creatnine wasn't elevated and kidneys weren't palpable. I thought, "Oooooh, much better than no UTIs or flank pain. Palpable kidneys--much cooler diagnostic decision."

I'm told that in a later episode,one of the doctors tries to con a patient out of a kidney by pretending SHE has PKD. I am kinda giddy with anticipation.

Like, HEY! If my disease is referenced on a hit TV medical series, we've totally made it.

Now all we need is a color. You know, how breast cancer is pink, diabetes is blue, AIDS is red, um, and I think there's a yellow ribbon, but I have a feeling that's like, for troops and stuff.

Still, if we get a color AND a hit TV show, we are well on our way to being one of the sexy diseases. Seriously.

Pain, once more with feeling

2011-10-21T15:11:00.000-07:00

The group of women I used to run with has sort of fallen apart. Pregnancies, new babies, job changes (which took two of my best girls to a whole other city. Stupid jobs) all contributed to the dissolution of the group. One of my friends, though, wants to get back in shape after giving birth, and the easiest way to do that with a new baby is to work out at her house. The easiest way to do THAT is a video.

Our video of choice? P90X.

We started on Monday. Chest and back with something called "ab ripper".

It is aptly named.

The day after we did the ab ripper, I could barely move. That's not all that big a deal, it happens when you do something you aren't used to. But what WAS a big deal was the pain in my abdomen was specifically centered around a spot in my lower right quadrant. From my many imaging sessions, I know there is large cyst there, perhaps the largest one among the many. I figured the tenderness was muscle pain, and moved on.

Except that I COULDN'T move on. Normally, with just regular out of shape muscle pain, it's manageable once you warm up, but trying to work out again, there were some moves that were too excruciating to do.

This lasted until Thursday. I woke up, and was in so much pain it hurt to stand up. I stayed in bed as long as I could (until about noon--yes, my daughter trashed my house), and then reluctantly tried to massage the pain away. I faithfully met up with my friend to do another round of p90x (it's a different muscle group each time--we haven't repeated the ab ripper yet), and was pleased to see that we were doing yoga that day. Hard, kick your butt yoga, but still, something that would stretch my sore muscles.

As I stretched, my lower abs were still painful. And not in the "wow, that feels good to stretch because they're sore" kind of pain, the "Hmmm, I'm not sure I should be doing this" kind of pain.

I wondered if it was a ruptured cyst, but I would think I would notice some blood in my urine. My urine is normal. So, I'm still hoping it will go away.

Today I ran for 30 minutes. Never before have my kidneys hurt DURING a run. Running is my saving grace, the one thing I can count on to take my pain away. Halfway through, however, my abdominal pain kicked in, and hurt with every step. It's less than it was yesterday, and it didn't stop me from finishing my run, but I was surprised to feel it.

So, I'm stumped. Massage doesn't help, exercise doesn't help, rest doesn't help.

Blerg. Again.

Creatnine

2011-10-06T13:31:00.000-07:00

Up to 1.07. I think that's bad.

I get confused about creatnine, mostly because I'm not ever totally sure what my level is. When this whole thing began, I thought I started at about 1.0. Then when I got pregnant with my daughter, my OB said that my creatnine went down to .7, which she says never happens. Yay, it's a miracle! Or a different lab. You decide.

So my local nephrologist has always used .7 as my baseline. Beth Israel uses the same lab every time they test me, so that's the number my neph here uses, too. She always tests my creatnine herself, but if it's different than the level from BIDMC, she goes with that one.

This last month, I was supposed to take my semiannual trip to BIDMC, but my life sort of imploded and I didn't make it. So, I did my BPs at home, and got a blood draw at a local Quest Diagnostics lab, which is supposedly the same lab all the HALT PKD subjects use. My last read from BIDMC was .9. Now it's 1.07. These seem like insignificant changes, but my nephrologist assures me they are not. And, also, she has always reminded me that even though my levels have always been within normal limits, the fact that they have increased steadily is also not a good sign, that many nephrologists will blow off any level that is within normal limits, forgetting that they need to take into account where the patient started. I'm not sure who to believe--when I brought up my changing levels with Dr. Steinman, he sort of shrugged and said my neph might have a point, but I'm still far from needing a transplant!! And who KNOWS what will happen in 10 years!!! Medical technology is going to be totally different!!!The future is so exciting!!!!!

(I'm using exclamation points because that's how I think about Dr. Steinman. An eternal optimist who sees endless possibilities. This is an excellent quality in a researcher. It's not as helpful, though, when you are trying to get practical answers about how you should prepare for that exciting future full of possibilities that might not be so exciting.)

But with a creatnine level of 1.07, I am now no longer within normal limits. A normal creatnine, according to the printout I got from Quest Diagnostics, ranges from 0.58 to 1.06. Obviously, 1.07 is not very FAR out of normal limits, but it's not like it's going to go down any time soon.

So now I'm racking my brain, trying to think of what I've done in the past 8 months to have my creatnine go up. All the while when I was stable, it was because I was more active. Okay, I'm on that--getting back on the horse after a few injuries. I was a little more liberal with caffeine intake--okay, a LOT more--guess I can cut that out too. I think of how I used to search for "kidney friendly" dinners to make (although I'll admit the eggplant casserole I made from a dialysis cook-book didn't go over super well with my family). I used to obsess over my food, and it made me a little neurotic.

Do I have to go back there again? This afternoon, I was thinking about all of this, and the constant question, "What can I do? What can I do?" started to thrum through my brain, and it made me sad, only because I've been there before, and despite all the work and the worry, there is still no guarantee that anything I do can save my kidneys.

Blerg.

Donating my body to science

2011-10-01T08:41:00.001-07:00

I totally want to do it.

This freaks my husband out.

See, when I was in college, I had an anatomy class where we worked with cadavers. I thought it was the coolest thing ever. I was just an undergraduate anatomy student, so I wasn't actually dissecting anything, we were just mostly doing a lot of looking and labeling, but it was still pretty cool. We were never told the names of the cadavers, and we were also never told how the people died, although it was pretty easy to guess what the female cadaver with no breasts and no uterus died from. Also, we decided that that rock hard gall bladder of the other cadaver was probably not a good sign, either.

It was made very clear by our lab TAs that we were to treat these people with the utmost respect. No dangling of their intestines, no joking about their bowels. We could not give them nicknames (although to be honest, we called one of the cadavers "Tattoo Guy", for obvious reasons. And since he had no family with a claim on his body, that cadaver sat in that lab for far longer than any cadaver should. He was in rough, rough, shape.)

I always had the feeling that I wanted to thank these folks for giving us such a gift. And I thought it would be cool if I could give another student some day the same gift.

When I got diagnosed with PKD, that idea was firmed up in my mind. I mean, my kidneys are freakin' awesome, in a diseased kind of way--what anatomy student wouldn't want to see that? And I kind of feel like if I benefitted from somebody else's gift, I should pay it forward, and give that gift to another generation of students.

Needless to say, my husband doesn't see it that way.

First of all, medical stuff freaks him out, and the idea of people rooting around in my body doesn't sound cool to him, it just sounds freaky. Also, he said that if he is alive when I die, he wants to bury me properly, with a gravestone and everything, so he can come visit. He doesn't want my body lying on a cold slab--he wants it in the earth, where it belongs. I think that's silly--why let my body rot in the ground when other people can benefit from learning from it? Heck, what if studying my body gives clues to PKD, how it starts, how it progresses, why some people in a family get it and some people don't, and leads to a cure? If there is even the slimmest chance of that, isn't that enough to keep my body out of the ground?

I told him I didn't want to stay in a lab forever, just one year. I think the family can make stipulations about stuff like that. After all, I don't want to be like Tattoo Guy--that's seriously gross. But one year in a lab, teaching students about PKD--I really like that idea. THEN my body can be buried, or cremated, or whatever my family wants to do with me, whatever will bring them comfort.

My husband suggested that I was actually being selfish, that giving my body to science denies my family the right to properly grieve when I die. Maybe he's right. It's not dead people you have to worry about, it's who they leave behind. Maybe it IS selfish to ask this of my family, to have them manage all of the arrangements, etc. And it's not like donating an organ--that stuff is done quickly, right after death, with no disfigurement and with a promise of a proper funeral afterwards (not that anybody would want my organs--they all pretty much suck). Maybe this IS too much to ask.

As you can see, this whole thing is still very much open for debate at our house.

Anybody else have thoughts about donating things to science?

At the very least, though, when I get my kidney transplant, I'll save my old kidneys, if I can. Because seriously, who WOULDN'T want to see polycystic kidneys in a jar? That's just pure awesomeness.

More about pain

2011-09-19T11:33:00.000-07:00

I think I've said this before, but I'm always amazed at all the different kinds of pain you can feel, at the same time, in the same body. Amazing, really.

For example, this month I sprained my foot. Holy rollers on a cheese stick, it hurt. It's been a while since I've broken a bone, and the pain was so intense, I thought for sure I had broken a bone in my foot. Luckily, I hadn't, but that didn't stop me from taking Vicodin and passing out in my bed after I got back from the doctor's office. The pain woke me up 6 hours later, and I popped another Vicodin without even thinking, and went back to sleep. Rough stuff.

Again, since it wasn't broken, I was able to walk without crutches or a boot about 4 days later, but the pain isn't gone for good. Now it's just a dull ache, the kind that you can sort of ignore until you wonder why you're grouchy, and then you realize your foot has been hurting for hours and you were too busy to notice it. Yet the brain still sends signals that says, "DUDE, this HURTS!" and it still takes energy to deal with pain. SO much energy--ever notice that? Pain is exhausting.

Anyway, today I went running for the first time in about 8 months. Still healing from the hamstring tendonitis, I've been using that as an excuse not to exercise, and I feel like I'm back to square 1. Or square zero, if that exists. I don't know why I need to relearn this lesson so often. I NEED to exercise. Without it, I get depressed, my mood swings get bigger, I lie in bed longer than should be allowed. And also, of course, there's the pain. My kidney pain, which is completely different than my foot pain, or even my hamstring pain.

So I went running today, after deciding I need to pull it together again.

Oh, the pain.

Foot pain from the still healing sprain, hamstring pain from the tendonitis, knee pain from the fact that I'm no longer doing the cross-training necessary to support a running habit and keep my knees healthy, and then just the regular groaning of a body that is not used to running anymore.

So then I think, "I'm doing all this to avoid a little kidney pain? Shoot, what's a little kidney pain compared to all of THIS?"

And there you have it. The rub, as it were. The trade off of the pain of getting in shape vs. the pain of being out of shape. I tell myself that the pain of being IN shape--the sore muscles, the tired knees, the blisters--is better than the pain of being out of shape, and mentally, I suppose there's a big difference. When I have tired and sore muscles, I feel like I've earned that pain. But seriously, how mental is that? I did such a good job in taking care of my body that I drove it to the brink? That I pushed it so hard it hurt? Go, me? Craziness. And yet, I guess I prefer this kind of pain to my kidney pain. And depression. Depression sucks.

So, I'm going to run again. Soon. I'm thinking about signing up for a 10K next month, because obviously, I need races in my life to keep me running, and I need running in my life to keep me sane.

Not pain free, though. I used to say that running kept my pain at bay, that it made me feel good. It makes me feel healthy, for sure, but pain free? No. To say that, well, that's just me, being a runner. And runner's are notoriously delusional. And notoriously always in pain.

At least I'll have nice calves again, though.

It's an illness MEME!

2011-09-17T14:21:00.000-07:00

So, apparently, this past week was "Invisible Illness Awareness Week". Who knew? And apparently, there's a meme that goes with it, which is something that I guess is like a list that gets passed around, and you're supposed to answer the questions on the list. These memes (and I have no idea how you say it---me, me, or rhymes with theme?) are popular on facebook, and I have done them there before, but this is the first time I've ever done one on a blog. Either way, I suspect nobody actually cares very much.

Still, they're kinda fun, and really, what's the point of a blog if you can't spout even MORE nonsense about yourself? So, here goes.

1. The illness I live with is:Polycystic Kidney Disease

2. I was diagnosed with it in the year: Early 2006

3. But I had symptoms since: 2005, although I have a memory of a doctor palpating my abdomen in prep for anesthesia when I got my tonsils out at 12. He pushed on the spot where I now know is a cyst a size of an orange, and he asked he if anything hurt. I told him it did. He stopped and said, "That hurt?" I nodded, and he looked at my mom. She shrugged and said, "Anything will hurt if you push hard enough." They both laughed, and he moved on with his examination. At the time, I wondered why he bothered to ask me if something hurt if he wasn't willing to take my answer seriously. It ticked me off, and the experience stayed with me as an example of how doctors don't listen to patients. When I was told that there was a good chance I've had these cysts for over 15 years, I remembered that moment. And now that I know why it hurt, in a weird way, it made me glad to know I wasn't crazy.

4. The biggest adjustment I’ve had to make is: daily meds. I'm super bad at taking them.

5. Most people assume: I can do something to stop the progression, or that there is a treatment. Or, that it's no big deal to get a new kidney. I had one friend say, "Why don't you just get a new kidney right now, to get it over with?" Yeah, sure. No big deal. They do it on House all the time, after all.

6. The hardest part about mornings are: um, that they are mornings? Mornings mean you have to get out bed. Beds are comfy.

7. My favorite medical TV show is: House. He's so mean, and yet so likable. Why is that? And it's fun, except for the unrealistic, "Hey, we found you a heart in 30 minutes, let's go do the transplant, and while we're at it, let's give you a new liver from your girlfriend, too!" thing. That kinda bugs.

8. A gadget I couldn’t live without is: My Iphone. Seriously, I'm addicted. And I love my ring tone.

9. The hardest part about nights are: getting comfortable. My kidneys make it hard to lie down on my back or my stomach, so I most often lie on my side. That makes my hips hurt, so I have to change positions a lot. Needless to say, I don't sleep very well. Also, my husband snores, and my dog is super flatulent.

10. Each day I take __ pills & vitamins: 3 pills. No Vitamins.

11. Regarding alternative treatments: I've already addressed that here. I hate it when people who know nothing about medicine, PKD, or my body tell me that they know how to cure me. Drives me crazy.

12. If I had to choose between an invisible illness or visible I would choose: um, invisible, of course. Who wants something visible, like leprosy or ebola? Yuck.

13. Regarding working and career: PKD didn't affect my career. My children did.

14. People would be surprised to know: that my kidneys are the size of footballs. And are seriously nasty looking. I mean, even nastier than normal kidneys, which most people would think are gross, but which I think are pretty cool looking, because I'm an anatomy geek.

15. The hardest thing to accept about my new reality has been: not knowing what could happen in the future. Although that sounds lame, because seriously, nobody knows what would happen in the future. I mean, nobody's passing out crystal balls, right?

16. Something I never thought I could do with my illness that I did was: run a half marathon. Twice. I totally rock.

17. The commercials about my illness:There are no commercials. PKD is not very sexy (although Wilford Brimley isn't very sexy either, and somehow he got that diabetes gig).

18. Something I really miss doing since I was diagnosed is: eating bacon. Love me some bacon.

19. It was really hard to have to give up: caffeine. So hard, I went back to it. Sorry, I'm weak. Plus, I really like Diet Coke.

20. A new hobby I have taken up since my diagnosis is: running. Sorta. You know, when I'm not recovering from a running injury.

21. If I could have one day of feeling normal again I would: Eat some bacon. And maybe wear a bikini because I'd have to take advantage of the fact that my belly button isn't sticking out in a weird way. Other than that, I feel pretty normal every day.

22. My illness has taught me: that hospitals all smell the same.

23. Want to know a secret? One thing people say that gets under my skin is: "I could care less". Really, the phrase is "I COULDN'T care less. (What, I can't say things that bug me that have nothing to do with PKD?)

24. But I love it when people:give me presents. I just had a birthday, and presents are fun.

25. My favorite motto, scripture, quote that gets me through tough times is: Jo Dee Messina's song, "Downtime". You can hear it here. (Sorry about the weird Japaniation video that goes with it--I'm not really sure what that's about. Also, this video of her song, "My give a damn's busted", which is another great song, really shows off Jo Dee's awesome arms, even though they show her rocking out on a guitar during the violin solo.) I used to sing "Downtime" to myself when I was vomiting during my first pregnancy. I have a memory of lying on the floor of a public bathroom, next to the toilet, because it felt good to have my face on the cold tile. I had to sing the chorus, "I tell myself that everything will be just fine. I'm just going through a little down time" to pick myself up off the floor. Yeah, it's a song about getting over a break-up, but it also works great for puking. Again, not specifically PKD related, but a great story, nonetheless.

26. When someone is diagnosed I’d like to tell them: That even when things change about your body, you're still you. That doesn't go away.

27. Something that has surprised me about living with an illness is: how much better I take care of myself, now that I'm sick.

28. The nicest thing someone did for me when I wasn’t feeling well was:mow my lawn. Actually, it wasn't because I wasn't feeling well, it was because my husband hit his head and couldn't function very well, and they figured that if my husband was out of commission, the lawn wouldn't get mowed, and so they mowed it. I didn't tell them that more than half the time, I mow the lawn, and that by taking care of that, they took something off MY plate, not my husband's. I didn't tell them that I was perfectly capable of mowing the lawn, just because I was so grateful they did it. It really did reduce my stress. I might fake another injury, just so they can come do it again. Again, not PKD related, but a really nice thing to do for somebody who is sick and stressed and too poor to have a lawn service.

29. I’m involved with Invisible Illness Week because: meme's are fun, and I like to talk about myself. Plus, my sister told me to do it, and I basically do everything she tells me.

30. The fact that you read this list makes me feel: like you might be disappointed that this list wasn't very funny. Aren't memes supposed to be funny?

Trying not to get fat

2011-07-16T10:45:00.001-07:00

My appt went pretty well the other day. Creatnine is up, but not by too much. If I continue to progress this slowly, I might have 20 years before a transplant. But of course, I have no control over my progression, so I'm not sure that means very much.

My neph looked at my belly button, and told me not to gain any weight. Unfortunately, I DO have control over that, and I guess the take-home message is that if I don't want my belly-button to enter the room before the rest of me does, I have to cut down on my regular trips to Chick-fil-A. That, and start running again. I'm giving myself 6 months before starting up completely again. It's been about 4 months since I stopped, and while my hamstring still hurts now and then, I'm hoping 6 months of inactivity is enough to get it healed. I'm also going to look into Hot Yoga--anybody ever tried it? I heard from a PT that it's good, especially for tendonitis. Lots of heat, lots of stretches, all good things for a chronically impaired hamstring. Like I said, I'm looking into it, and I'm trying to justify the cost by telling myself that PT would cost as much and do less.

Not that I'm speaking ill of PT, just that in my case, it wasn't the magic bullet I had hoped it would be. I learned some good exercises that I still do, though, so I guess that's good.

I'm extra tired lately. Does that mean anything?

I'm off to Boston in a few months. After a summer of traveling, getting on another plane sounds like torture, but at least it's a short flight, and I can schedule it so I can go up and back in a day. Usually I try to drag it out and do something with family and friends in Boston, but at this point, I'm mostly interested in spending as much time in my own bed as possible.

That sounds like I'm lazy. Maybe. I'm going to blame my kidneys, though. Except for my expanding thighs, crappy kidneys can pretty much be blamed for everything. Like I said, before, having PKD is all about finding the perks.

And then it was summer

2011-07-07T13:00:00.000-07:00

I swear, either time is moving faster, or I'm taking longer to blink. Every time I turn around, it's a new month. I didn't know it was possible for seasons to go so fast.

We are back in the United States, after spending 6 weeks abroad in Israel. I love saying, "abroad". It's almost as fun as telling the YMCA I spent the last 6 weeks "overseas". It makes things sound much more glamorous than they actually were. We were living in a small apartment in Jerusalem while my husband taught a seminar at Hebrew University. In so many ways, it was completely different than anything we have ever done. And in so many ways, it was just like life at home. Laundry, grocery shopping, cleaning, cooking, putting kids to bed---all of these things have to happen regardless of the language the locals are speaking. Still, it was a great experience, and one that I hope we can do again.

Now summer is in full swing, and half over. HOW did that happen? I have no idea. We are in the middle of swim team, garden harvest, mowing the lawn every other minute, and thunderstorms every other day. Before you know it, it will be August, then September, and then school will start again and I'll wonder how my children got to be so old.

I'm seeing my nephrologist on Monday, and again I find myself in the position of not having a 24 hour urine sample for the lab. I remembered at around 10am that I needed to have it done before my appt, which means that they would probably need it tomorrow for results to be in on Monday. No big deal, I hadn't peed since 8am, I could totally just start collecting my pee the rest of the day and call it good.

It's 4pm. I've got nothing. I was too busy taking my son to the doctor (he stepped on a rusty spike--OUCH--), getting his antibiotics, picking up drinks and pasta salad for the swim meet tonight, getting the kids lunch, doing laundry, playing with my daughter so she doesn't torture her brother, hunting down swim meet paraphernalia (I'm convinced that a single swim cap is the very hardest thing to locate on this planet, or at least it's always the hardest thing to locate in my house), catching up on some work I need to do to prepare for a church meeting I have tonight, and carbo-loading my oldest so he doesn't drown when he faints from lack of calories as he swims the 50 meter butterfly to think about my own urine. I wouldn't be so concerned, except my creatnine went up again the last time it was measured in Boston, so I'd like it to be measured accurately.

Sigh. I wish I didn't have to think about pee so much.

On another scatalogical note, my daughter got violently ill with vomiting and diarrhea on our trip abroad (see? It's just fun to say), and didn't get better when we came back. I finally took her in to the pediatrician, and of course by the time we got in to see the doctor, she acted perfectly fine. But the doctor was nice and checked her out, and suggested that if she continues to have diarrhea, that I should take a stool sample and bring in it to be tested for parasites, or the like. He gave me a sterile sample cup, and then said, "Now I have to dig up a hat for you". Not only did I know what kind of hat he was talking about (and let's just say it ain't the kind that goes on your head), I already have two.

Sometimes having a kidney disease does have its perks.

I'll keep you posted on my appt next week. And I'll tell you what she says about the fact that my belly button is now a permanent outie. Like I said, PKD has its perks.

Back in the saddle

2011-04-11T21:41:00.001-07:00

I have permission from my physical therapist to run. 1 mile. I'm going to try tomorrow. The sad thing is, I bet it will be tough. I'm about 3 weeks into PT, which means I'm about a month without outside exercise. And when I say without exercise, I mean NO exercise. I got felled with a nasty cold, which turned into a nastier sinus infection. I'm not one for pain meds, but me oh my, I haven't been in that much pain in a long time. I was popping Tylenol like it was candy. The antibiotic I got kicked it pretty well, but not before I spent the better part of 2 weeks in bed. Not ideal.

But on the plus side, not moving for 2 weeks has done wonders for my hamstring. Lying in bed tends to be pretty easy on the joints.

My physical therapist is very nice, and I like her. It's interesting being on the other side of the evaluation. I hope to learn from it to be a better therapist myself. I often think back on my early career as an SLP, and wish I had done things differently. Youth and inexperience can be energizing, but I sure made a lot of mistakes. If and when I go back to work, I'll be better prepared to handle the things they just can't teach you about in grad school.

On a random side note, my son and I taught Maggie, our big fat lab, to catch a frisbee this weekend. She IS an old dog, and yes, it's a new trick. Especially tricky for her, considering she weighs over 100 pounds. My son and I haven't laughed so hard together for a long time. Maggie caught about 4 tosses until her big snout broke the frisbee in half. She has more distraught about it than we were, and pawed at it, like a cat trying to revive a mouse.

Like I said on my sidebar, she's sweet, but stupid. But surprisingly agile for a creature who resembles a warthog.

Seeking for alternatives

2011-03-28T14:55:00.000-07:00

Today I want to talk about alternative medicine.

This is my opinion, obviously, so I'm not speaking for any community at large. Just me. But it's been a bee in my bonnet for a while, so here goes.

I think there are a lot of great alternative things out there. For example, I use peppermint oil to help with poison ivy and aloe vera to help with sunburn. I like massage. I even like reflexology, and while I'm not really sure how it works, or even if it DOES work, I like how it feels when people rub my feet.

I believe in acupuncture, though I've never used it personally. When I was struggling with infertility and seeking every thing I could get my hands on, I worked with an "allergy" specialist who did muscle response testing and acupressure to clear my body's energy and make me healthier. Again, I don't know if it worked, but it sure felt good.

I have a friend who thinks lavender is the cure-all. She sprayed some on my son's skinned knee once, saying it has antibiotic properties and pain killers. Spraying lavender on a skinned knee is pretty low stakes, so I let her. I don't know if his knee healed faster than with plain old neosporin, but he stopped crying, and that was good enough for me.

Myofascial release. Good stuff.

Mostly, though, I believe in food. My infertility and miscarriages ended when I read the book The Schwarzbein Principle. It's the best book about food that I've ever read. She claims that sugar and salt, not fat, is our enemy, and she outlines a healing program, complete with recipes. And her basic premise can be boiled down to this: If you can't pick it, fish it, pluck it, or hunt it (at least theoretically), you shouldn't eat it. Basically, if you have to open a box or a can before you start eating, you are eating the wrong food.

I followed her healing program (which consists of eating, you know, crazy things like lots of fresh vegetables and dishes made from scratch), and within 2 months I was pregnant. My conclusion is that food is a powerful, powerful drug.

So I'm down with looking outside the box to improve health. A friend of mine posted a picture of a red velvet cake made with pureed beets instead of 2 bottles of red dye, which I thought was FABulous. And if you want to go on a spinach juice fast, be my guest.

My issue, though, comes when people offer me things that they think will help with PKD when they themselves are ignorant about both PKD and the product they are recommending. I listened to a woman recently talk about some drops she has that could help cure another friend's hay fever. "What's in the drops?" I asked, because hey, I have hay fever, and I'd love a cure.

She didn't know.

She couldn't tell me one ingredient.

So, in essence, she was advising a friend to take something into her body when she herself had NO IDEA WHAT IT WAS. And this friend has some pretty intense health issues of her own and is on some pretty heavy duty medication, and there was no knowing how these drops could interact with those medications, because the person RECOMMENDING the drops couldn't tell her what they were.

This is reckless behavior. And it bothers me.

I am often approached by people who think they have the answer for me and my family, people who often have never heard of PKD, but have had awesome results with product X, and they want to share. They are well-meaning, and I appreciate the thought.

But here's the problem. My body is not like their bodies. I am a unique person, with a unique make-up, just as all of us are unique. More importantly, however, I have compromised kidneys. I want to ask these people, Are you positive that whatever you are going to give me is going to interact well with my polycystic kidneys (which are not the same as kidneys affected by diabetes, or infection, or any of the dozens of other reason kidneys fail.)? How will it interact with my current medications? With nothing but vague claims posted by vague sources on the internet and personal anecdotal evidence, are you willing to stake my life on the benefits of this product?

You may be. I am not.

And that's what gets me--the higher the stakes, the more crazy the claims. It's like we are all so desperate to find something that will fix everything, we start making things up. Like the magic elixer of
Nicholas Flamel, we want to find something that gives us the answer to heal us.

But nobody really knows the answer. Even top researchers in this field disagree how best to heal PKD. The CRISP study was interesting to read, and even more interesting found that decrease in protein intake did not directly affect the ultimate outcome of renal failure. But Dr. Steinman says in his (anecdotal) experience, vegetarians just do better over the course of the disease. I went vegetarian, then asked a dietitian about it, and she said that Dr. Steinman's observations could be contributed not to a decrease in protein, but to an increase in the use of fruits and vegetables. So it seems that having an extra cup of broccoli is better than cutting out the burger.

I've seen a lot about the use of an alkaline diet for patients with PKD, and there was a debate about that at the PKD conference, too. The dietitian who was there said that an alkaline diet is a pretty healthy way to go, but then one of the doctors said that the initial studies they did in animal trials with an alkaline diet weren't promising. So even TOP PEOPLE who are doing CUTTING EDGE research aren't exactly sure what we're supposed to eat. The only thing they have come up with is that eating a lot of fruits and vegetables is good for you.

I'll keep putting peppermint on my poison ivy and aloe vera on my sunburn. I'll even make lemon balm tea from my garden, because lemon balm is supposed to have antiviral properties and I've got a nasty cold. But I also know enough that even something as mild as lemon balm shouldn't be given to my friend on thyroid medication, because it inhibits the absorption of Thyroxine. See? Herbs can do more than just make things all better. They are drugs in and of themselves, which means that just because it's natural doesn't mean it's safe.

So until you can tell me EXACTLY how what you're giving me is going to interact with my meds and my kidneys, HOW it will lower my BP (BP is controlled by more than just one thing in the body, multiple feedback systems with multiple hormones), and how it will interact with those huge cysts that are caused by a GENETIC disease (not environmental, not hormonal, not bacterial or viral--it's in the very fabric of my DNA), I'll ask that you just leave me to my lemon balm and fresh veggies.

Thanks.

Learning even more about myself

2011-03-25T17:20:00.000-07:00

I had my PT eval today, and it was pretty much what I expected. The PT said that hamstring injuries can take a while to heal, and I got the feeling that she was hoping she could point to one thing and say, "It's because of THAT!" but alas, that would be too easy. Predictably, we're going to work on strengthening my core, aligning my pelvis, maybe correcting my stride while I run, and maybe some soft tissue massage.

I DID, however, discover that my external (maybe? It might have been internal) hip rotators are super weak. The PT was going around my legs, testing my strength by having me push against her, and she did something with my hips and I couldn't push against her. At all. It was weird. And surprising. Even she seemed surprised. I mean, I'm not the strongest person on the planet, but my legs have carried me through some pretty tough races, so I didn't expect for them to be found wanting.

So she gave me an exercise to do to strengthen these rotators, and boy HOWDY is it hard. Because I'm weak.

But it was kind of fun to learn something new about my body, even if it is about weaknesses. I always think I'm sort of the expert on myself (I mean, I have seen just about every organ in my body on some kind of image or another), so it was interesting to be taught something new today.

Because I'm kind of a geek like that.

In other healthy news, I snorted salt water mixed with baking soda tonight to help alleviate my sinus suffering. My own improvised Neti pot, if you will. I'm here to say it was grossly unpleasant and remarkably effective. Another learning experience. Maybe tonight I'll finally be able to sleep without going through an entire box of tissues.

Linky Goodness

2011-03-22T19:00:00.000-07:00

Here is the story from The Daily Press, our local newspaper, about me and PKD. The print version included a half page picture of me lifting weights. I look lame. The picture of me and my daughter is much better.

I have to say I was surprised it was so extensive, and, I dunno, embarrassed? Maybe that's not the right word, but while I'm not usually one to shun the spotlight, this article feels, well, it feels like they should be writing about somebody else. Somebody more important, somebody sicker, somebody who is doing more to fight the disease. I'm not exactly out there on the front lines---I haven't even been to a PKD Walk in 2 years. And my life is really good! I look at my kids, both healthy and happy (and potty trained---oh yeah baby, you heard right) and I realize that I could look back on these years as the best years of my life. Both kids at home, both living simple lives, both facing problems that rarely go beyond who was being a butt-head during recess kickball. We have a good life, and I don't go a day where I don't offer a prayer of gratitude for everything we have going for us.

Bottom line, I'm doing pretty well. And besides not being able to kick this recent cold that has left me coughing up my lungs and singing show tunes an octave lower than usual, I usually feel pretty good too.

Still, my kid IS pretty cute. And she takes a dang good picture, if I do say so myself.

For those who are visual learners

2011-03-21T18:51:00.001-07:00

Here is a shot from my latest MRI scan. A girlfriend of mine calls it "The Money Shot". And it is impressive, if I do say so myself:

All the white parts are cysts. All the non-white stuff is actual kidney matter. Now you know why they can't just take out the cysts. It just doesn't work that way. Sadly.

When I went to the orthopedist last week to talk about my hamstring, I told him about my kidneys, and he palpated them, just to see what I was talking about.

"Oh my gosh, that is SO COOL!" he said, while feeling all my cysts. "I wish I had a med student here---this is rare, a total learning experience!"

Yup, that's me. Educating doctors since 2006.

The doctor, who is a runner too, said I should trash talk somebody about my kidneys, like on a basketball court or something. "Oh yeah, well, my kidneys can TOTALLY crush YOUR kidneys!"

Good times, my friends. Goo-hood times.

My friend calls it "drunk dialing the blog"

2011-03-18T22:13:00.000-07:00

That's what she says, anyway, when you find yourself awake at night and sleep is far away and you have the good luck to have a blog. I guess it's the 21st century version of drunk dialing somebody, when you call them up for a brain dump. Except because we're mothers (and, in my case, happen to be a Mormon), we don't drink. So blogging is the next best thing.

(Well, being drunk is probably more fun than blogging, but you take what you can get.)

Not that I have anything too radical to say. In PKD related news, my creatnine is up, which can't be good, but I haven't sat down with anybody to calculate my GFR and all that jazz. So I'm not sure EXACTLY what it means. But I know it means I'm off the plateau I've been enjoying for the last 2 and a half years, so that's kind of a bummer. We'll just have to wait for the next plateau, I guess.

In other non-PKD related news, it's spring around these parts, and it's such a luxurious glorious thing it almost makes a girl feel a little crazy with happiness. My husband planted a dogwood, which is the first tree we've planted in our yard. It's the first thing we've done in 5 years, beyond flower beds and vegetable gardening, that really changes the landscape. It feels permanent. And grown up. Like we're finally pulling things together.

Of course, then I walk into my house, past the chalk drawings the porch and the dirty rocking chair, and come face to face with the dog hair and the toys littering the playroom and the toilet paper my 3 year old has unraveled in the bathroom, and I realize that we're really not all that together after all.

So then I go back outside and pretend I didn't see any of that other stuff.

(I'm excellent at solving problems by ignoring them.)

In body-related news, I went to get my PT eval done today, only to be told that my appt was next week. I brandished the doctor's order at the girl behind the desk and said, "I SWEAR I was told to come in today," and she politely pointed out that the piece of paper I was using as my defense did indeed have the words, "PT appt, 3/25, 9:30am" written on it. And when I say politely, I mean she really could not have been nicer.

Which is to say, I am a dork.

In actual news related news, a local news story is coming out about me on Sunday. It's been kinda fun to tell my story to a reporter, and get my picture taken (although I haven't seen the picture yet, so I may be using a different word than "fun" when I see it). It's funny, because a lot of other diseases are a lot more serious than mine, and while mine doesn't have a treatment or a cure, there is the possibility of a transplant, which can't be THAT bad. I mean, it's not an ideal situation, for sure, but there are lots worse things. So I sometimes have a weird kind of guilt about PKD, like it should take a back seat to bolder, sexier diseases, like cancer and diabetes. But nobody has ever heard of PKD, so it makes a good story. (And my kids are awful cute, so there's that, too.) Anyway, I hope the story will be well received. It was sure fun to work on.

I'm going to try to go to sleep now. The brain dump is complete. Ah, the power of bloggin....

Tendonitis

2011-03-16T06:35:00.000-07:00

That's what the doctor thinks. I have a PT appointment on Friday, so we'll see.

Monday, I ran 4 miles, and felt great. Monday afternoon, I was wincing from the pain. Monday night, I almost couldn't sleep, it was that bad. Wow.

Yesterday, I didn't do a lot--ran about one mile, with some walking. I was actually in the middle of a photo shoot (can I use that word if there is one photographer snapping pictures of me running?) for an upcoming article about me in the local newspaper. Our new head of our local PKD Foundation chapter is trying to raise awareness of PKD, and asked if he could send my name to the local paper so they could do a spotlight of somebody who is living with PKD. I agreed, and it's been kinda fun.

But that meant they needed some photos of me working out, which meant more running, which means more pain today. And I've learned that when one thing in your body doesn't work quite right while you run, you unknowingly compensate, throwing off your stride, etc. So the result is that this morning, not only is my leg burning, but I've got all kinds of weird twinges in my back. Blerg.

Last night, I was complaining about my leg, and my husband started complaining about HIS legs (he was recently diagnosed with bursitis, and had to go through his own round of PT about 6 months ago), and we started laughing. Old and creaky, that's what we are, and neither one of us is even 40 yet.

I tell ya, exercise, especially running--it's a bear. Maybe it's a sign we should give up running and take up shuffleboard instead.

Ragnars, Half Ironmen, and hamstrings

2011-03-11T17:07:00.000-08:00

In the winter, I get lazy.

It's cold. And I'm wussy.

I used to be tough. I spent 8 winters of my life in Massachusetts, and boy, they don't mess around with winter up there. When the sun comes up at 9am in January and it's dark by 4:30, you know you're in a place where winter commands some respect.

But I've been gone from New England for 8 years now, and what can I say, I'm a soft southern girl. And so running at 6am in 20 degree weather? I'd rather be fat.

Also, I tweaked my hamstring somehow. It's been bugging me since October, but I figured once I finished my half marathon in November, and backed off a little bit, it would heal. The same thing happened last year--I injured my knee and it bothered me for a long time, but after a period of rest and easing back into running with some walking thrown in there, my knee was as good as new.

I haven't had the same luck. I picked things up again last week, but nothing serious. I did a fast 2 mile run at the Y, followed by an easy 400meters in the pool, a total 45 minute workout at best just to ease me back into things. My hamstring was fine until I cooled down, and it's been a beast ever since. I was okay this morning, so I took my dog for a quick 25 minute walk (and she's as fat as they come, so we weren't exactly sprinting) and the pain is back again. Dang it. I've broken down and called a doctor, and will be seeing him on Monday.

The thing is, winter is over. It's moving on, which means it's time to get moving myself. I'm putting together a team for a half Ironman this fall, a team where I do the swim leg of the race, a 1.2 mile endeavor. Also, my running partner, who had the audacity to MOVE (stupid job), is trying to put together a Ragnar Relay team. The Ragnar Relay is this crazy 200 mile overnight ultramarathon, where you and 11 of your closest running buddies run 3 legs each over a 24 hour period. Punch drunk, sleep deprived, and possibly dehydrated, people say it's great fun. If we can pull off a fun team (and really, it's all about peeing yourself laughing with friends in the van), it could be an awesome thrill.

But HOW am I supposed to do all these things with a bum hamstring?

Stupid hamstring.

And if I needed a reminder to stay in shape, it came in spades last month after weeks of not working out. Yup, kidney pain.

Stupid cysts.

I saw Dr. Steinman last month for my check-up in the study, and he said that maybe after all of the double-blind stuff is done, he wants to go back and do a sub-study (that's what he called it, at least) to determine if muscle tone helps decrease pain. He wants to compare pain surveys with the back MRIs and see if muscle strength and thickness have any correlation with decreased pain.

I'd like to think I personally inspired this study. After all, I AM the one who told him that exercise helps with my pain. I wonder if he'll give me credit on the paper? I don't need to be first author or anything---I'd take 4th author, or even a footnote. With asterisks. And lots of happy face emoticons. I'm not greedy, or anything.

I'm planning on running on Monday before my doctor's appointment, mostly to make sure I'm still hurting so as not to embarrass myself or waste my doctor's time. I mean, how much would it suck to get to the office and have everything feel fine? You know how that happens. It's like your body decides, "Holy CRAP you're taking me to a doctor? No way, sister, I'm not letting that guy NEAR me!" and then pulls off some miracle healing so by the time you actually GET to the doctor, you look like a perfectly healthy idiot.

But if it's cold, I might just stay in bed and risk the embarrassment.

Stupid winter.

So do you still blog?

2011-02-07T17:41:00.000-08:00

Somebody asked me this. Yes, I still blog, I thought, but then realized this one has been neglected. And since I am once again sitting at Beth Israel for my semi-annual check in with Dr. Steinman, I have a lot of time to catch up.

First off, Haiti was, well, Haiti. People keep telling me I need to write something up about it, and I did some blogging about it on another blog, and kept friends and family updated through facebook while I was there. But every time I sit down to really write about it, I don't know where to start. Do I start with the heat, the humidity, the sheer physical difficulty living in a place where there is no break from the stifling weather? That proved harder than I thought, and I even passed out once when I was particularly dehydrated and badly sunburned. Do I start with the trash, the goats eating aluminum cans, the smell every night when people set fire to their trash piles? Or do I talk about the people who were living in a make-shift shack on the median in the middle of a highway? There is so much to talk about, so much to absorb, so much to sort through, that 6 months after I went, I'm still processing. So I don't have something awesome to offer those who want a write-up. Sorry. But it was, without a doubt, an amazing trip.

I was going to go back in January, but the cholera stopped us. Yes, because a place that has come literally crashing down needs to deal with a deadly disease, too. And then the hurricane hit and flooded Leogane, the city where we were going to work, and along with the political riots and the airport shut downs, I suppose a trip seemed a little crazy.

So I'm in Boston instead.

I did my MRI and blood work today, as well as met with Dr. Steinman. I have to stick around another 12 hours or so as they collect a 24 urine sample, and then hopefully I'll have some free time to tool around the city, if it's not too cold. What can I say, in my old age I've become a wuss.

Everything still seems to be going well--my BP is low, and I'm feeling pretty good. The MRI was more difficult than I remember. I got overconfident and didn't really mentally prepare. I mean heck, this is my 4th MRI, piece of CAKE. That didn't help much when they pushed me in the tube, and I utilized a time honored relaxation technique to keep my panic attack at bay by chanting in my head, "CALM DOWN CALM DOWN CALM DOWN CALM DOWN CALM DOWN CALM DOWN CALM DOWN CALM DOWM CALM DOWN".

I should totally market that. That's relaxation gold, right there.

My body must have been super keyed up though, because once I finally did calm down and focus on relaxing into the cushy table (and cushy it was), I was actually jerked awake by the tech giving me instructions through the microphone.

Going from panic attack to asleep in 15 minutes flat. That can't be good for you.

Dr. Steinman discussed cutting my BP meds in half, because it's getting so low, almost too low for the control group I'm in. That makes me happy, not because I want to screw up the study, but because it means that I'm still doing something right. Maybe the exercise is making a difference after all.

Speaking of which, I did the same half marathon again this fall, and knocked a full 15 minutes off my time (can I get a small woo-hoo, y'all?). It was a great race, and a lot of fun to run the course again, knowing I was stronger and faster this year. I've backed off the running, though, because I tweaked a hamstring (there's always something, isn't there) and am going to try to ramp up my swimming. Plus, I started a new exercise video, Jillian Michaels' 30 Day Shred. That woman is of the devil, but she sure know how to plan a workout. I couldn't walk right for 2 days when I started it. Sadistic witch.

(I'm sure she hears that a lot, and I'm sure she doesn't care. She gets paid to be sadistic. Heck, maybe all personal trainers are just wannabe serial killers, and get their aggression out instead by doing personal training. You can't TELL me they don't like pain....)

My daughter is almost 4 (I know, I can't believe it either), and I talked to her on the phone today. She kept asking where I was, why I wasn't home, and I had to start to explain everything to her. It made me remember that my son was this age when I first talked to him about PKD, when we got out my anatomy book, and I showed him where the kidneys were, told him what they did, why mine were bad. I realized I'm going to have to go through this with her, too, as she starts to figure out that mom goes to the doctor a lot. She knows about doctors now too--she's old enough to remember (and be scared of) shots. So the cycle of education begins again, as we deal with this disease as a family.

At least the trips to Boston will help them grow up as Red Sox fans.

And at least this time I got my own personal copy of my MRI scans. I can gross out my husband with pictures of my diseased internal organs.

Good times, my friends, good times.

So the big news

2010-07-12T20:11:00.000-07:00

In one week, I'm going to Haiti.

I'm going to teach sq. foot gardening, maybe a little English, maybe love on a few little kids who need some love. I don't know, I'm not sure exactly how it will all work, I just know that I think my life is going to change forever in a week.

I've never been to a third world country---a stopover in Mexico while on a cruise was the closest I have ever come, and it wasn't exactly rustic, if you know what I mean.

There aren't many experiences in my life that have been life changing. I can think of a few---working with 3 quadriplegics for almost 2 years, becoming a mother, and, yes, getting diagnosed with PKD--but by and large, life's ups and downs are small hills rather than big mountains. I have a feeling that Haiti will be like Mt. Everest in terms of defining moments.

When I was in college, I strapped on a backpack and wandered through Europe. I knew what I looked like---a fresh faced college student who, at age 20, thought she was the coolest thing to hit the Autobahn (although I didn't actually get to drive on the autobahn, I was just a passenger, and I look back now and wonder, WHY didn't I ask to drive?). I was sort of fearless, in the way that only a college student can be.

Well, I'm not a college student anymore, I'm a mother, and not as fearless. I've seen more, hurt more, loved more, and know more than I did back then, and I wonder how I will look to the 20 year old college students I will be traveling with. Oh yes, it is a student group who is doing spearheading this--who else would take on such a challenge? I know what it feels like to be a headstrong student--the world is your oyster, your playground, something to conquer. After all, you have nothing to lose.

I'm really looking forward to this trip, not only to learn things about Haiti, the people, and to hone my gardening skills, but to also rediscover something inside of me, something that I hope hasn't been lost forever as I've grown older. I'd like to rediscover my fearlessness, and feel the freedom that comes from that.

I'll let you know what I find.

As you can see, now I have birds

2010-06-27T18:30:00.000-07:00

I'm not sure why I have birds, they just sort of appealed to me. I'm kind of lousy with this kind of stuff--colors, style, layouts, picking curtains, picking carpets, finding cute jewelry, etc. Pretty much anything that requires any kind of artistic eye, I suck at.

But I thought I'd check out some new templates, and there were the birds. They made me go, "Oooh! Birds!" So I picked the birds, and then fiddled around with the colors, and now you have this. I don't know if it's good, I don't even know if I like it, or if it's readable, or even very fun. I just know I liked the birds.

Some day maybe I'll figure it all out. I mean, it's not like I haven't figured out hard things before. For example, I can honestly say that after almost 20 years of applying make-up, I have the eye shadow thing down. I even recently learned about eyeshadow PRIMER, which keeps your eye shadow on ALL DAY LONG. Who knew?? Not me. So now, with a few tutorials from friends and family who have awesome eyelids, I can now say that for the past two days, my eyeballs have rocked. And after mastering eyeballs, mastering a blog is mere child's play.

Of course, twenty years ago, I also thought that bright green eyeliner applied to the actual inside of my eyelid put me in the awesome make-up group, too, so maybe I'm just deluding myself, and it will take another 20 years for me to figure out that I am, as usual, completely whacked.

In the meantime, enjoy the birds. And don't tell me if they're ugly. Eventually, I'll figure that out, too.

PS. I would TOTALLY take a picture of my eyelids for you all to applaud, but my baby, who happened to turn three this month and is way too big and too talkative and too interested in her own excretions to merit the label "baby", broke our camera when, in a shocking display of tantruminity, she ripped it from my hands and threw it across a room where it landed on a very very hard wood floor.

My excellent husband, however, has turned this travesty into an opportunity to exercise his love of all thing gadgetry, and has spent the last few weeks perusing the internet for a camera that will FIT OUR NEEDS, because OUR NEEDS of all things photography are so VERY high. Needs like NEEDING to post a picture of my eyeshadow on my PKD blog. So very high indeed.

PPS. actually, we do have an event coming up that could actually use a high end camera, but I am not ready to post about it. No, it's not a baby (I WISH!), but something very cool anyway. When the details are in place, I'll tell you all about it.

A day in the life

2010-06-10T13:46:00.001-07:00

I often get emails that thank me for this blog. That makes me feel super duper great, actually, because it makes me feel like 1) people are reading (wooHOO!) and 2)there is something in my story that resonates with others. I think that's pretty cool.

When I was first diagnosed, I didn't find any other blog out there about PKD, or at least I didn't know anybody who knew about any other blogs. I have since found a few, and they are great, but at the time, the only thing that was available was the patient support group, which was run through a list-serv.

This list-serv freaked me out.

Every day I would get emails about one bad thing, or another bad thing, or how something else awful happened to yet another person with PKD. Seriously, after a month or so, I unsubscribed, because I couldn't simultaneously deal with my own emotional adjustment and everybody's else's grief too. And so I started my blog.

An email I got a while ago thanked me for being so normal. I don't often get thanked for being normal, so while it was an odd thing to say, I actually took it as a compliment. And it's true that in so many ways, I lead a completely normal life. Let me tell you about it. And if you want to skip this post, I'll understand. A normal life is pretty boring.

Today, I woke up at 6:00, but turned off the alarm to snuggle with my husband. I usually run at six on MWF and Saturday mornings, but Tues and Thurs are my day off to sleep in. Plus, my husband and I had gotten into a big fight last night, so some snuggling was in order. He left the house at 7 for work, right before the kids got up. My 8 year old crawled into my bed around 7:15, and he and I snuggled until around 7:30, when he got up to get dressed and do his homework. I dragged out of bed at 8, helped him with breakfast and getting packed up for school, and hugged him out the door at 8:45 to the bus stop.

My 3 year old daughter and I spent the morning sort of puttering around the house. She and I watched Dora (or, rather, she watched it wrapped up in my lap while I dozed. Yes, I was tired--didn't I tell you Thursday is my day to sleep?). I put in a load of laundry, cleaned up breakfast dishes, chatted with a friend and my sister, and then around noon, I packed up my daughter and headed to the Y.

I dropped her off in daycare while I did laps in prep for my open ocean swim next month. It was a short work out--I only got to do 700m before they closed the day care (a hazard when you leave your house after noon, and the day care closes at 1:00). I then played in the kiddie pool with Little Sister for another 45 minutes or so, then gave her a hot shower and headed to Chick-fil-A. (I don't know about you, but swimming laps gives me a hankering for chocolate shakes.)

After Chick-Fil-A (I chose the char-grilled chicken sandwich--it's only 300 calories, and compared to other items, it has a lower sodium count), I went grocery shopping. I came home, fixed dinner, ran another errand, then picked up my son from the bus stop. He and his sister are currently wrestling on the playroom floor while we wait for my husband to get home. Then we can have dinner before one of us takes the boy to swim practice and the other one puts the girl to bed. Dinner is a rotisserie chicken I picked up at the store with ceasar salad and cantalope--again with the chicken, I know, but again, low (ish) sodium all the way around. I have a caffeine free Diet Coke sweating on a napkin on the computer desk while I type, the same Diet Coke I used to wash down my meds I took just a few minutes ago.

I'll admit, I'm not very good at taking meds. I take them when I remember, which means I never take them at the same time every day, and there are often days I forget altogether. I'm told this is bad, that the best way to make meds most effective is to take them daily, and at the same time. 4 years into this, I'm still getting used to that. Maybe someday I'll get the hang of it.

So that's the life of a mom with PKD. Tomorrow will probably be much of the same, with some variations because we have family in town.

See? Painfully normal. And boring. But I've said this before-- I've learned to never, EVER underestimate the power of boring.

Still kicking

2010-05-22T21:36:00.001-07:00

I went to my annual check up with my nephrologist this week. Things still look stable, which is great. No changes in creatnine or kidney function. Phew. If things continue this way, I might forget to worry about myself. And THEN what would I do for drama in my life?

I'm in the process of training for another race, and it's slow going. My run-swim-run is coming up, and a long winter with a husband who was working out of state during the week has taken it's toll. I am officially out of shape again, which is frustrating. 2 weeks ago, I ran the Race for the Cure 5K, and managed one of my slowest times ever. Not that it's all about the time, but, well, okay, yeah, it's all about the time. Why ELSE does anybody run a race? But not only was I not well conditioned for a 5K, but it was a hot and humid day, and the last quarter mile of the race was uphill. I mean, really, uphill?

It totally sucked, and kicked my butt. For the first time since I started running seriously, about 4 years ago, I found myself walking in a race. I just couldn't get up that hill with any kind of speed. And then, as my husband constantly tells me, once you stop running, it's hard to start again. He's right, of course. I just had to tell myself over and over, "Slow and steady, slow and steady, slow and steady gets it done." I managed to run the last part of the hill, and was rewarded with a down hill slope to the finish line. I tried to compensate for my walking by sprinting as fast as I could the last hundred yards or so of the race, and was rewarded with an overwhelming wave of nausea and the need to sit down and put my head between my knees.

Not exactly my best race ever.

And so I start the process over again. Slow and steady build up as I train for another race and go through the motions that I've gone through before. The cycle begins again, but I know as frustrating as it is to start over, it's still better than giving up completely. And life just seems to go in cycles, right? Or maybe cycles isn't the right imagery. That suggests that things are always the same, or they revert back to the way they were. I guess a better way to think of it is going through ups and downs. Because when it comes to my body, I'm pretty sure I'm never going to be the way I was.

Still, I'd like to think that there are some things I'm doing that make my body better than it has ever been. I mean, I fully expect to have Evageline Lilly arms after my 1K open ocean swim in 2 months:

TOTALLY doable, right?

Slow and steady, people. Slow and steady.

I can't do a side plank

2010-03-16T06:40:00.000-07:00

I've been struggling with this exercise for weeks now, and I've given up. I can do everything else (with a little effort, and not without some resulting soreness) in all of the exercise classes I take, but side plank is impossible. It's not even a matter of not being able to keep up, or needing to take a rest. I. Can't. Do. Them. At. All. I was frustrated and discouraged, until it finally dawned on me that maybe it's because of my enlarged kidneys. My kidneys push out on my waist on the side, so maybe that's why my obliques (?) are so much weaker. And it makes me wonder if I will ever be able to do these exercises, or if I should even bother.

Or maybe I'm just lazy.

Nah. I'm going with bad kidneys on this one.

For those who are interested:

Can YOU do that??

A strict no baked goods policy

2010-02-15T19:52:00.000-08:00

I went to the Y today for a yoga class I really love. I try to get to class on time, but today, I was 10 minutes behind all day. When I finally forced my toddler, a girl who prefers to wear either only a diaper or a princess dress-up, to put on decent clothing and shoes (although even there we compromised---she went wearing her swimsuit, pajama bottoms, and a jacket) and got everybody corralled into the day care, I was 15 minutes late. Walking in 5 minutes late, I can do. And I have even walked into a Pilates class close to 15 minutes late. I apologized to the teacher afterwards, and felt sheepish, but got over my sheepishness when somebody let out a delicate toot whilst we were doing rolling exercises.

Hey, I may make some noise when I walk in late, but not THAT kind of noise.

And the fact that I had to surpress a giggle when this fair lady tooted while her bum was in the air clearly means I've been spending too much time cooped up with small children. Yes, I know, I need to get out more.

But walking in late to this yoga class is altogether different. The lights are off. There is quiet music. And even though people are sweating and grunting because they are forcing their bodies to contort in ways that look tortuous but feel great once they've been mastered, it's not an environment that is easily interrupted.

Plus, when you open the door, you let in more light, and everybody squints at you from their downward dog position. That can't be good. For anyone.

So I skipped it, and headed to the gym instead. The only problem was that I was dressed for yoga, not the treadmill. I was wearing clothes that I picked specifically to keep me warm in the freezing group exercise room, and I quickly discovered after 30 seconds on the elliptical machine in a room well heated by running, stinky, sweaty bodies that I was in trouble.

So I stripped.

Well, not completely. I peeled off my shirt, revealing my jog bra underneath, and dropped the shirt on the ground. I took a peek at the other exercise freaks around me, to see if anybody else had done the same. Nobody had. I briefly wondered if it was allowed, or if it was just that not everybody is as totally comfortable with a muffin top as I am. After all, I am perfectly willing to contribute my softish middle to the remarkable size of my kidneys. Sometimes being diseased does has its advantages.

Turns out, it's not allowed. I had the following conversation with a perky Y employee who saddled up to the elliptical machine next to me.

Girl:"Hi! How are you tonight?"

Me, wondering who the heck starts up a conversation with a sweaty stranger, "Um, (puff, puff) fine."

Girl: "So, are you new to the Y?"

Me: "No. (puff, puff)"

Girl. "Oh. Well it's just that I don't think I've ever seen you here before."

Me, thinking Really lady, there are a billion people in this room. Do you really think I'm ready to believe that you recognize them all? "I usually come to the gym in the mornings (puff, puff)."

Girl: "Oh, great. Well, welcome to the Y! We're so glad to have you here."

Me, thinking, I've been a member for six months, somehow I don't think you're only here to welcome me. "Did you come here to tell me to put my shirt back on?"

Girl: "Yes. Please. Sorry."

Me, getting off the machine, putting on my shirt, getting back on, "No problem. I just got really hot. It's just really crowded and hot in here."

Girl: "Yeah, I know, sorry. But we have a no-midriff policy. Thanks for understanding."

Me: "Yeah, no, it's cool. I kinda wondered, since I didn't see anybody else like this. But I've never taken my shirt off before, so I didn't know about the policy."

And then it struck me how truly truly odd this conversation was. Or maybe it was just me. Just me, being odd.

Y girl bid me a cheery goodbye, and I sweated like nobody's pig through the rest of my workout, then headed to the pool. As I swam, I thought through the odd conversation, thinking that although she was cordial and professional, what that employee was REALLY saying was, "Nobody wants to see your muffin top. And look around--you don't want to see anybody else's either."

And that made me giggle almost as much as the pilates toot.

Nobody ever told me working out at a gym could be this fun. I should have signed up years ago.

Swimming

2010-02-06T19:30:00.000-08:00

I've signed up for a new adventure. This summer, I'll be doing a race that is a run-swim-run. It's a 1K run in the sand, a 1K open ocean swim, and a 5K on the beach boardwalk. The running distances don't worry me---I can do a 5K without too much trouble. It's the swimming I'm going to have to work up to.

I grew up in Southern California, and my earliest memories are of swimming. And when I say earliest memories, I mean my very first memory is of a swim lesson, or, rather, sitting wrapped in a towel eating the candy my teacher bribed me with, watching my twin sister standing in the pool, wearing nothing but a diaper, arms wrapped around herself, bawling her eyes out. I even have a memory of thinking, 'Just do it and you'll get some candy.' I don't know what it is she was meant to do, I just know that I did it, and got the candy. My twin sister has a similar memory, so I know I'm not making this up. When I asked my mother why she thought our memories were so salient at such a young age (she claims she started us swimming when we were younger than 2), she says it was because it the lessons were so traumatic.

I think it was because I just really liked candy.

The upshot of the trauma, however, is that my sister and I became fairly strong swimmers. This is a must when you live in California and have a pool in your backyard. Fences are great and all, but my mother figured the best defense in keeping her kids safe was to teach them how to swim.

(I followed her example, by the way, and taught my son to swim at an early age. I was profoundly relieved at having done so when he fell off a dock at age 4, and was able to safely and easily swim to the shore. Seriously, folks. Teach your kids to swim. It's the only sport that can save their life.)

I never swam competitively, or anything, but I did have some amazing experiences swimming with Rick Hoyt in Walden Pond. It became a weekly summer ritual for us. Every Friday I would drive from his home in Boston to Concord, where I would unload him and his wheelchair down to the shore of the lake, and then I would swim with him across it. In retrospect, a lot of bad things could have happened, and when we started, I was probably not in good enough shape to really manage things safely. But we pressed on, and despite the raging ear infection I got from swimming in one of the most baceteria-filled bodies of water in Massachusetts, those summer days at Walden Pond are some of my best memories of living in Boston.

And so I going to try to get my swimming groove back. I'd like to come up with some cool cosmic reason for why I'm doing this, but the bottom line is that I've discovered that if I'm not training for an event, I won't stay motivated to exercise. Yeah, I know, you'd think that a life-threatening disease would be motivating enough, but, sadly, it's competition that really gets me going. Actually, it's not so much the competition--I don't care very much about speed or winning--it's really fear of embarrassing myself. It's not impending death, but making a fool out of myself that gets my butt off the couch. Sick? Twisted? Perhaps. But that's what works for me, so I'm going with it.

I picked a run-swim-run for 2 simple reasons. I can't train for a long running race again (my husband's new work schedule doesn't allow me to run in the mornings), and I don't have a nice enough bike to do a short triathlon. So, run-swim-run it is.

I started the training for the swim yesterday. I learned something. My arms are not as strong as my legs. Ouch. I have a long, long, LONG way to go.

Do you think my old swim teacher would be proud? Hope so. And maybe at the end of it all, I'll reward myself with some candy, for old time's sake.

Boston

2010-01-11T20:37:00.001-08:00

Off to Boston again this week to see Dr. Steinman and be tethered to the Beth Israel hospital for them to collect at 24 hour urine sample. It's an odd thing, really, to be at a hospital all day for no other reason than to have people collect your pee. And sometimes I'm the only person on the floor, which means everybody is there for me and my urine. Like I said--odd.

There are even nurses on staff who hang out all night, just in case I have to pee in the night. And in the interest of blogging and the tradition of TMI that goes with it, I have to say that I rarely, if ever, pee in the night, and knowing that there was a person on call for that very specific reason made me feel all guilty and awkward, like I should drink extra water so as to have to get up in the middle of the night to pee so the nurse's job wouldn't be a total wash. But then I thought, well, what if she sort of dozes in the middle of the night in a cot somewhere? Would she be bummed to have to get up for something that I really don't need to do anyway?

It's all very complicated, you see.

But a trip to Boston is always nice. From my window at the hospital, I can see my old college dorm at BU, and I get to think about what my life was like then, and what it's like now. And even though I'm looking at it through a hospital room, it's nice to know that at least in some areas, I've made progress.

But it's butt cold there now, and despite progress in some areas of my life, I'm quite certain I've lost all my New England toughness. I didn't think I would--eight years in Boston tends to toughen up a girl, as well as add to her wardrobe of hats. I'm woefully short on cute hats these days, and cute gloves are even scarcer. I hardly own a sweater, and I own one scarf that I wear when I visit family in Utah. Good thing it's versatile.

I hope to have good news in Boston, that is, to learn that nothing has changed since I was there in May. Because sometimes, progress isn't a good thing at all.

The gospel according to me

2009-11-24T08:30:00.000-08:00

I get a lot (okay, not a lot, but let's pretend half a dozen is a lot) of emails from people who find my blog who are newly diagnosed that ask me lots of questions. How do I keep my BP down? What diet do I adhere to? What alternative methods are available? How do you manage pain?

Biggest one of all--HOW DO I STOP THIS DISEASE FROM PROGRESSING?

I don't really have any answers, especially not to the big one. But 4 years into this, I've learned some things. And I've given up some things. And so this is how I live with PKD:

I eat like a normal person. Over the years, I've tried lots of different diets. I even went vegetarian for a year, and the result was increased creatnine levels, 10lb weight loss (which sounds good, but can be really bad. In my case, it was bad), and a constant feeling of hunger and general crappiness. I was happy and relieved when Dr. Steinman's dietitian told me that eating a cup of broccoli with my hamburger was probably more beneficial than leaving out that hamburger altogether.

So now I just eat mostly normal food. I work hard not to eat food out of the box, to prepare stuff fresh. I don't always succeed, and I don't beat myself up about it the nights my family eats Kraft Mac'n'cheese. I don't eat ham, bacon, beef jerky or sausage (well, okay, sometimes I eat sausage, but only if my husband grills it) because of the high sodium content. I almost never eat canned food, and if I do buy it, I always (or I try to always) buy low sodium varieties. Since changing to this diet, I've gained back my 10lbs (which is a good thing), my creatnine has stabilized, and, most importantly, I feel a thousand times better. So, that's what I'm going with until somebody tells me something different.

I manage my pain with exercise. And not only some exercise--really regular exercise. I need to work out at least 3 times a week to keep my flank pain away, but when I do manage that, it's like magic. No pain. I know that I haven't been moving enough when I feel pain again. It's not an exact correlation; last night my kidneys were really bothering me, and I ran a 5k on Saturday and another 3 miles on the trail on Monday, so sometimes pain just comes, no matter what. But flank pain used to be my constant companion. Since I've stepped up my activity, that's not the case. And that's been really nice.

I keep my BP down with meds. I'd like to say the exercise helps, and maybe it does, but I wouldn't trust exercise alone to keep me healthy. That's the bummer part of it all, but I'm grateful for meds that keep me stable.

I don't know how to stop this disease from progressing, but I do know that thinking about it can make a person crazy with fear and anxiety. I've worked through that part of the equation with some anti-depressants. I've never been on them before, and I was hesitant to add another medication to the mix. After all, can't I just depend on the endorphin rush from running to keep me sane?

Apparently not. The night my husband found me, at 3am, curled up in the bathtub sobbing was the night I decided that I couldn't live like this.

I'm grateful for those kinds of meds, too. With them, I'm able to approach life with a lot less anxiety and anger, and my family has benefited from having a wife and mother who is physically AND mentally stable. I have been told, as a rough estimate, that probably about 50% of people with PKD are being treated for mild-moderate depression. So either PKD is kind of a big thing to manage emotionally, or genetically, we're all seriously whacked. Either way, I love my Lexapro.

So that's the gospel according to me. Everybody is different, and I don't expect everybody to live like me. Coming up on the 4th anniversary of my diagnosis, this is how I am living with PKD.

Done. Now what?

2009-11-22T20:37:00.000-08:00

13.1 miles done and done. 2:23:21. I can honestly say I felt great crossing that finish line. I had a big dopey grin on my face, and I was whooping like an idiot. My knees complained at me the next morning, and I was moving a little slower than before, but all in all, my body handled the 2 plus hours of pounding remarkably well.

I was back on the treadmill 4 days later, and ran a 5K yesterday at my son's school. I got complacent--what's 3 miles after 13?--and didn't prep for the race at all. No stretching the night before, no breakfast, no liquids.

I almost puked at mile 2.

Lesson learned---even the smallest races still require preparation.

And so I find myself now in the best shape I've been in my life. And yet, there's an odd sense of let-down. This goal has sustained me for months, and I achieved, pretty much, exactly what I wanted to achieve. I wanted to run the race maintaining a 10 minute mile pace. Done (well, 10:12, but close enough) (and don't mock me for being slow until YOU'VE run for 2 hours straight). I wanted to feel good enough to sprint the last mile. Done. I wanted to cross the finish line with dignity and happiness. Done.

Now what?

Another lesson learned---races don't change who you are on the inside.

I'm not sure what I expected would happen after I ran the half marathon. Certainly not that my PKD would go away. I wanted to do it to prove something about my body, which I think I did. I proved that my body is still capable of doing great and amazing things, that I can push this thing beyond what I think possible, and that it will respond better than I had hoped. I also developed a more profound sense of gratitude for what my body is. That's certainly something I wasn't expecting.

But I'm still the same person. What's up with that?

And so another lesson learned. If I want to change who I am, it has to come from something deeper within. I'm not sure exactly what that means---I'm still pondering it. I'm still trying to figure out who I want to be, and where PKD and my body fits into the bigger picture. And after almost 4 years of sort of obsessing over my body and the numbers and the doctor's appointments and all the rest of it, the idea that who I am transcends physical space is something that is going to take some getting used to. It's an idea that I took for granted before my diagnosis, an idea that has gotten lost in the shifting sand beneath my feet as I've struggled to find my footing. It's an idea I have to spend some time getting reacquainted with.

In the meantime, I'll be hitting the trail tomorrow with my running buddies, getting ready for another 5K in December, and perhaps even another half marathon in April.

Yet another lesson learned: post race let down notwithstanding, running is addicting.

Crossing the finish line

2009-11-11T16:46:00.000-08:00

When I started this whole hare-brained (or is it hair-brained?) idea of running a half marathon, I asked 3 other women to do it with me. Along the way, we've picked up a few more who come to our training runs, and for a while, it looked like we would have as many as 8 women run on Saturday.

As it has gotten colder, and life has happened (pregnancy, heart problems, knee issues, unemployment--these women have been hit hard, I tell ya), we're down to 4. It's not the original 4 who were going to run, interestingly, but still, 4 is a good number.

Today, it might be down to 3.

My friend twisted her ankle today, possibly spraining it. I haven't seen it yet, but she says it's pretty bad. I'm almost as upset as she is, just because I know what this training has cost her, what it's cost all of us, and I know how hard she's worked. It's been an awesome pleasure, training for a big race with this amazing group of women. And I know that sentence has far too many adjectives, but sometimes you just have to break those babies out.

So she called me tonight and jokingly said we should follow Rick and Dick Hoyt's example of running, with me pushing her in a wheelchair.

I actually don't think it's a bad idea.

Where does one get a racing chair, anyways?

Still, there's a chance she just twisted it, and it will be okay by Saturday. But if she doesn't run, then we'll just have another excuse to train for yet another race.

And that's okay with me.

Wish me luck on Saturday.

Oh, and if you don't know who Rick and Dick Hoyt are, then seriously, look it up. Spend some quality time with Google and learn about one of the coolest human beings on the planet. You won't regret it.

Night at the ER

2009-10-08T17:31:00.001-07:00

I got another "wow" from yet another health professional. I LOVE that.

Last night, I drove myself to the ER with excruciating abdominal pain and vomiting that had occurred almost every half hour over a 4 hour time frame. That wouldn't be all that impressive, I suppose, except that I'd been vomiting for 3 days. The ER doc, who I have since heard is a good and competent doctor, did a thorough exam of my abdomen. When he got to my overlarge kidneys, he got a confused look on his face, so I filled him in.

"That's a cyst. From my kidneys."

He looked even more confused, and felt the outline of my entire kidney, starting at my back, and palpating forward. He nodded, and said, "Wow. I'm impressed."

Seriously, I love that. I'm not sure why--I guess I just like to think that if my kidneys are failing, at least I can be impressive while I do it.

I told him that he should do an ultrasound, just to look at them, because kidneys like this don't just come in every day. I informed him that he was missing a GOLDEN opportunity. He hesitated, and then just laughed it off and left. I like to think he considered it. I am, if nothing else, a kickin' medical learning experience.

Instead, he ordered an X-ray, had the nurse put in an IV to rehydrate me, and ordered anti-nausea meds. As the nurse emptied the syringe into my IV, I asked her what she was giving me.

"Zofran", she answered.

Nice.

They give that stuff to chemo patients.

But I understand why it's so expensive ($100 a pill?). That stuff ROCKS. I shudder to think what our hospital bill is going to be, but I gotta tell you, it might just be worth every penny.

As it turns out, my kidneys are not failing, at least not at the moment. The ER doc thinks it was a just a nasty stomach virus that flattened me but good. He sent me home with more Zofran (score!) and told me to contact my primary care physician or come back if the vomiting doesn't subside. But he said that with the Zofran, that wasn't likely.

Have I mentioned that stuff ROCKS?

So it's been a long and puke filled week, and I'm a little pooped out (no pun intended). But I'm grateful it didn't turn out to be something more serious, and that it was nothing to do with my kidneys. I'm having an ultrasound tomorrow just to be sure (something about my condition makes my PCP want to cover all his bases. My husband told him that he had a headache, and the doctor shrugged and said "So, you have a headache." I told him that I had a headache, and he told me to call his office for an MRI.) I have never been so happy to see an IV in my life. And I have no bruising from that IV, which has to be a first, which means my nurse pretty much rocked too.

My ER visit has done nothing to ease my fears about health care in this country, and I still think there is a lot that is seriously screwed up about the way we do things in this country. But I do just want to say one thing:

Thank heavens for patented chemo drugs.

Everybody has an opinion

2009-09-30T08:59:00.000-07:00

When I had trouble having kids, I got all kinds of advice.

"You have to gain some weight. That will help."

"You need herbal supplements."

"You just need to relax."

"After having sex, stick your legs up in the air. That will help the sperm get to the egg faster."

I so wish I was kidding about that last one.

When I got diagnosed with PKD, the same thing happened. Surprisingly, the advice was similar, with the suggestion of weight gain and herbal supplements. People who had never even HEARD of PKD went spouting off about this remedy vs. that remedy, and how this one program helped them SOOOO much, never mind the fact that they had absolutely no idea what polycystic kidneys were. I mean, if it worked for their fibromyalgia, it would work for my genetic defect, right?

(No mention of sexual positions, though, which is actually slightly disappointing. I mean, can you think of a more fun way to get rid of a life threatening disease?)

Now that I'm running, I'm surprised that I'm STILL getting advice, now on how to run. I mean, isn't running sort of basic? Like, you just put one foot in front of the other? Oh, heavens no. There are all kinds of things to know about shoes, clothes, hydration, training schedules, nutrition, and everybody seems to think he (or she) is the expert. I found myself having a hard time not getting irritated when somebody told me that I was heading straight for injury if I didn't run a specific program, which, when explained to me, sounded like it would drive me completely crazy.

(And still no sex tips. What's up with that?)

It all makes me wonder if any of us knows anything about anything. It makes me realize how much we are at the mercy of the loudest or most popular voice, and how unless we want to spend a huge amount of time researching every method ever developed for whatever we are working with, we have to just rely on what other people tell us, and go with our gut.

My gut tells me that running 3 miles and feeling energized at the end of it is a good thing, that 8 hours of sleep and 3 days of rest during the week and eating food that is recognizable will go much farther than taking some unregulated herbal pills mixed with fish oil.

And sex. Sex is a good thing. But don't worry--I won't be sharing any tips either. You'll have to figure those out on your own.

Missing the walk

2009-09-11T20:18:00.000-07:00

Normally, at this time of year, I'd be timidly asking folks to donate to the PKD walk, and I'd be packing up my kids and heading down to Virginia Beach or wherever to participate in the Tidewater PKD Walk.

We're skipping it this year.

The Tidewater Walk got canceled, (I think nobody was willing to be in charge, and I wholeheartedly put myself in that category) which means that I would have to go to DC to participate in the walk. That's all fine and good, and DC probably has a kickin' walk going on, but that's quite a drive for me and my kids. The DC walk is also tomorrow morning. I have other responsibilities on Saturday night I can not ignore, and it would have meant a crazed weekend of driving.

So, like I said, we're skipping it.

I feel guilt.

The PKD Foundation is full of folks who are doing their best to help people like me. They are working with legislators, funding the research I'm a part of, and dedicated to getting as much information as possible about this disease out to the general public and to primary care providers. Sometimes I feel like I owe them a lot. Okay, I DO owe them a lot. They are an anchor in this crazy world of chronic illness.

But I really didn't feel like driving my kids on a 5 hour round trip journey.

Does that make me ungrateful?

I got a call from somebody from the PKD Foundation not long ago, asking me specifically if I could head up the walk in my area, or if I was willing to take on a more administrative role in the Tidewater chapter. I had to be honest and tell her no. All kinds of no. Adminstrative duties and fundraising aren't my thing. I know my limitations, and I know it would drive me crazy trying to manage all of this stuff. And I have little kids who are giving me a run for my money as it is, and I have to think of their needs first.

Maybe I'm using their needs as an excuse not to be involved. It's possible. But sometimes I feel like PKD invades so much of our lives already--my daily meds, my trips to Boston, my trips to my local nephrologist (wow, that's a weird phrase), my dietary restrictions (which I don't follow nearly as much as I should, but they are there). I feel like if I open the door to the PKD Foundation right now, we would all drown in a sea of constant talk about kidneys. And my kids deserve more than that, don't they? Can't they at least have the illusion of having a normal mom?

That's my thinking anyway, and that's where I am right now. Which is to say, that's why I'm not at the walk.

I'm not closing the door on involvement with the PKD Foundation. I have only awesome things to say about my interactions with people over there, and they are doing fine work. I just think I need a little while before I can be a part of it. And this time around, the walk just didn't work out for us.

So I wish everybody a happy PKD walk weekend. And don't worry--my guilt about missing it will fester enough that I'll be sure to make it next year. So you can look for my timid plea for cash then, too.

The whys

2009-08-01T18:23:00.001-07:00

I went shopping for new shoes tonight. We took the whole fam-damily, as the store was having a buy one, get one half off sale, and my husband needs new shoes too. So we wrestled our overtired toddler through the aisles, trying on shoes and getting socks that won't give us blisters. You should see the blister I have on my heel. It was bleeding profusely after my run today. There is something morbidly empowering about running until your feet bleed. Either that, or I'm totally insane.

Which brings me to the main point of the post. Why am I doing all this? That's what somebody at the store said to me as I asked his wife about her shoe preference, although I think his exact words were, "Why you be doin' all this running?"

Why I be doin' all this running stuff, indeed. I gave him a short answer. "To stay in shape," I said. He said, "You already in shape, girl! Why you be runnin' for a marathon?"

A half marathon, I reminded him, but he just shrugged and kept looking at me, waiting for a good answer. I said, "So when I'm old, I can still get around! And look good doing it!" His wife said, "Yeah, so we don't fall apart, so we can keep going!"

I gave her a little powah to the sistah fist pump, and walked away, laughing.

But he brings up a good point.

I'd like to say that it's because of my PKD, and that's partly true. Exercise helps with pretty much everything in life, including blood pressure and kidney function, and training for a big race with people who are counting on me to show up at the trail head at 6:30 am ensures that I am getting that regular exercise. I'd also like to say I'm doing it because I have something to prove to myself and others, but if that were really true, there are less painful ways to make a point about how awesome I am. And none of them involve bloody blisters.

It is also true that exercising makes me less moody, and being stronger and more fit helps me feel better and sleep deeper. These are all good reasons to do what I'm doing.

But I finally figure out the real reason I'm doing this.

I just want to look good naked.

Not a reason I can share with a stranger in the Reebox store.

Nonetheless, I feel it's a valid reason as any.

My husband wholeheartedly agrees.

5.2

2009-07-26T19:03:00.000-07:00

Nope, not the number of my creatnine, or my phosporus levels, or any other crazy amount of numbers that I deal with these days. Those are miles, baby.

I know that I said I wasn't going to log my miles, but c'mon, we broke the 3 mile barrier we've been butting up against, and it felt really, really good. Okay, it didn't feel that good when one of my partners made me sprint up the very last 50 yards or so, and I honestly truly wondered if I was about to have an asthma attack, but we did it. And I'm not even sore. I'm amazed, really, that I didn't feel any pain. That means we were going really, really, REALLY slowly. But hey, none of us are out for Olympic medals or anything, so slow is just fine.

My husband was the one who mapped the run, and he showed the map to my friend later in the day, the one who made me sprint. She was incredulous that we had gone that far (again, when you're moving slowly, sometimes progress isn't readily apparent). She then looked at me and said, "We can do this."

And I believe her.

It is time

2009-07-06T12:47:00.000-07:00

When I write that, I think of the baboon monkey in 'The Lion King', you know, the one that was voiced by Benson. I also saw that guy as the Phantom of the Opera. The Wikipedia article said he stirred controversy when he played that part because of his race. I think he stirred controversy because he kind of stunk.

But it's time to rebuild my body. I know I've said this before, and I know that I've even blogged about it before, but you have to realize that I blog with the best of intentions, and write down each and every time I exercise because I feel that if I blog about it, I will be motivated to continue. But I've come to find that a blog post is pretty lame motivation to go running when the alarm goes off at 6:30 and it's raining outside. Seriously, it's much easier than one would think to just say, "I'm tired, I'm comfortable, and there's no way in hell I'm getting out of bed. Screw you, blog" and go back to sleep.

And, of course, the beauty of the blog is that even when you say that, they are still waiting for you, forgiving and nonjudgemental. Blogs are WAY less judgemental than journals. I've found that journals have a huge judgemental streak in them, mixed in with just a pinch of mocking. It must be the paper.

Blogs are like dogs. You can kick them around, and they'll still come back, tail a'wagging. Okay, maybe not all dogs will do that, but Labrador Retrievers will. Blogs are like that. Like labrador retrievers.

But what I'm blogging about is no small spurt of exercise, documented by a day of pain and then no exercise for a week. I'm talking about a world of pain. It's a HALF MARATHON. Yes, I'm going for it. I've employed helpers to help me do this, too, 3 women who are not dog-like in the least, and will not have tails wagging if I leave them in a lurch at 7:00 in the morning. We did it today, and it was perfect. We're all slow and plodding, so we will all improve together. And chat our way through the pain. Girl talk is my favorite way to exercise.

Now, I'm not going to use this blog to document every moment of the training process, because I know somebody who does that and wow is that boring. Not that my traffic here is astronomical or anything, but I think I should at least put in more effort than to log my milage. I can do that other places. But I thought I should at least log that I'm doing it, as one more way to motivate me. Lame as a labrador it may be, but every bit counts.

In actual kidney related news, they are very big. But they stick out in such a way in my abs that I wonder if people just think I have ripped abs. Not that anybody really sees my abs, mind you, but I was in a swimsuit the other day, and my cysts had sort of shifted in the spandex to make a not-unattractive ripple through my torso. Sometimes, of course, my cysts make me look like I've taken one too many trips through the Krispy Kremes drive through, and that is less appealing. But sometimes, it's all fake abs, baby.

Too bad I don't have cysts other places to pose as muscle. There are some seriously freaky possibilities there.

Happy July, everybody.

Overthinking it

2009-06-15T17:04:00.000-07:00

This post is about poop. Just so you know.

I have a two year old, so poop is a major part of my life. Well, I have a dog, too, which means that even if I didn't have a two year old, poop would still be part of my life. Someday, I hope that poop will not be so prominent in my daily existence, and that I will just have my own poop to think about. But by that time, I perhaps will have to have somebody else around to help me with my poop, so maybe I shouldn't be wishing for that day to come after all.

Anyway....

My daughter, (we'll call her Little Sister) does not like diapers. That is to say, she prefers Pull-Ups that have her favorite Pixar character on them. (Yes, she's only two, and can already identify Buzzy, Woody, and Lightning McQueen. Don't judge me.) And really, if it was up to her completely, she'd be naked all the time. But my carpet is white, so I do draw the line at 24 hour nudity.

This morning, though, she had on a diaper, the one that my husband had put on her last night. I was still blurry eyed and hadn't gotten around to changing her yet, when she grabbed her bum and started to cry. It was clear that she was straining, trying to poop. And she was yanking on her diaper. So, I said, "Do you need to go potty?" She said, "Yeah. Potty" (and, by the way, let me just interject that her "yeah" is just about the cutest. thing. ever). I pulled off the diaper, and she ran into the bathroom, where her little potty sits, and she dutifully pooped a little in her potty. Success! Hooray! I couldn't believe it, and I praised her excitedly. I figured she was good to go for a while, so I let her roam free, sans diaper. (And hey, it was a rainy day, we had no plans to go anywhere, so it's not like I was neglecting her or anything. Again, don't judge me.)

Not long after that, she starts the whimpering thing again, and I check out her bum. (this is where it gets kinda graphic--those with weak stomachs should not continue...) She had a very large poop coming out, and she seemed completely freaked out about it. I took her back to the potty, thinking we could repeat the earlier performance, but no such luck. She screamed, she trembled, she wrapped her arms around my neck, and only calmed down when I sat back on the big potty and pulled her into my lap. We rocked there a second, and I cooed to her as I rubbed her tummy.

Why is she so constipated? I wondered. I rubbed her little abdomen,hoping a little massage would get things going. Is it because she's dehydrated? Did I not feed her enough fiber? And then, of course, my mind went to the more morbid. Are her kidneys enlarged, too? Are they displacing her bowels, the way mine are displacing MY bowels? I rubbed and cooed, cooed and rubbed, and worried all the while. She eventually slid off my lap, and toddled back to her room to play.

I watched her, though, mindful of her bum AND my white carpet. Sure enough, the whimpering and trembling came again, and again she wrapped her arms around my neck and begged to be held. Finally, though, I figured I couldn't do this all day, and so I simply put a CARS pull-up back on and hoped for the best.

She pooped within 5 minutes.

Hmmm, mom. Overthink much?

Perhaps, just perhaps, Little Sister is not ready for potty training. And perhaps, just perhaps, I should worry less about kidneys and just buy more Pull-Ups.

When Cyndi Lauper sings about kidneys, attention must be paid

2009-05-19T21:03:00.000-07:00

I don't know, maybe I'm biased, but there is just something wicked awesome about celebrities singing about giving a kidney to a man named Milton Greene, "We are the World" style. Simply Awesome.

A lot of pee in one week

2009-05-13T17:02:00.000-07:00

It's been a kidney intense week. It started last Thursday, when I did my 24 hour urine collection for my nephrologist here, which of course lasted until Friday. I got a blood draw Friday morning, and then Sunday afternoon headed out to Boston to see Dr. Steinman and spend yet another 2 days collecting urine. On Tuesday afternoon, I've never been so happy to pee in a toilet in all my life.

More blood draws, more conversations, and then back home to see my nephrologist here, with more lab results.

Phew.

There is good news, though. For the first time in 2 years, my creatnine is stable, which means that my kidney function has stablized since Little Sister was born. She'll be two next month, which makes me feel good and weird and happy and sad all at the same time. My baby, two years old? And it took 2 years for my body to finally feel good again?

The question, of course, is why my creatnine is stablized. The most likely explanation is that the drug study is working, and that this new treatment has some promise after all. That would be good news, although it's a bit early to think that. And I've spent so much emotional energy preparing myself for a kidney transplant, it's almost like I can't get rid of the idea altogether. Plus, what if this is just a temporary thing (which, let's face it, is probably the most likely)? Then I get back on the emotional rollar coaster.

Sheesh, I haven't felt this emotionally whiplashed since college, when I made out with my best friend (yes, he was a guy) who then refused to speak to me for 2 weeks.

Ah, young love. Or, whatever that was.

I'm a dope

2009-05-03T19:11:00.000-07:00

I was in the garage today, looking for some stuff in the freezer, when I came across my 24 hour urine collection jug. (Man, why does that thing always end up in the garage?) I took it out of the bag, along with the order the doctor had put in, the one about the lab work I was supposed to get done and the 24 hour urine sample I was supposed to submit BEFORE my appointment tomorrow.

Oops.

I called the lab today, because, as it happened, I was fasting today, because our church fasts on the first Sunday of each month. I needed to be fasting for one of the lab tests (the lipid panel maybe? I dunno--I can't keep track anymore), so I figured I Was in good shape to run over there, get it done, ready for my appointment tomorrow.

The lab was closed. Which is probably just as well, because even if I could get a quick blood draw, I can't exactly produce 24 hours worth of urine on command.

Seriously, I'm a dope. What is my nephrologist supposed to do with me tomorrow if she doesn't have any lab results? Nothing, is the real answer. So I have no choice but to change my appointment, which may mean I won't see the doctor until 2025. And I can't wait to call and say, "Sorry, I need to reschedule. Why? Um, I forgot to collect my pee."

On a good note, I'm heading to Boston next week for yet another round of testing at Beth Israel with Dr. Steinman, and I'll have an entire hospital room to myself for 2 days. I bought a cheap laptop for this very reason, so I can blog, waste time on Facebook, and catch up on some digital scrapbooking I've been putting off while my husband deals with getting kids to school, lunches, and cleaning grass stains off of baseball pants.

Good times, I tell you. Good times. I love Boston in the spring. Maybe I'll see some ducklings.

An outie

2009-05-02T19:48:00.000-07:00

I read a book about pregnancy once where the woman said that she can tell a woman has been pregnant just by looking at her belly button. This made me think of two things:

1) How is my belly button going to change when I'm pregnant?
2) What the heck is this woman doing looking at other people's belly buttons?

But of course, she was right. When you are pregnant, your belly button does fantastic things. It stretches, mostly, which is weird, but it also sticks out in crazy ways. My second pregnancy, it was particularly bad, so bad that it actually made my friends giggle. My niece even drew a picture of my pregnant, and added a HUGE belly button. It was actually pretty cute, and I found it much more endearing after I stopped looking like a beached whale.

And my belly button did go back to some semblance of its normal self after my daughter was born. A little worse for the wear, perhaps, a little gooshier, but on the whole, pretty much the same as always.

Now I have an outie again. And it hurts.

This can't be a good thing.

My last renal ultrasound showed a lot more cysts than I had ever seen before. When my daughter climbs up on me in bed and sits on my stomach while I sing to her, I can't have her sit too long there because it starts to hurt. I can't lie on my back for very long anymore, and if my husband hugs me the wrong way, I wince. And through it all, my outie sits there, a outward manifestation of the inside growth and movement of my kidneys.

At least this time it doesn't poke through my shirt.

I get new creatnine readings on Monday. Wish me luck.

I guess they can't hear the people in my head

2009-04-01T16:25:00.001-07:00

In church, we have a "good news minute". That's the time where anybody who has good news can quickly shout it out and share.

I almost never share any good news. I have many reasons for this, not the least of which is because I doubt "Hey, I got my pantry organized. GO ME!" is anybody's idea of good news. And I don't like to monopolize the time. I've been told in the past that I talk too much, so I lately I have tried to tone it down. To not talk about myself so much. To be the type of person where people say, "Wow, you're a really good listener."

That's not something I hear very often. Talker, yes. I'm amazing. I can talk your ear off. Listening is something I need to really work on.

But I participated in the good news minute when I got accepted into the HALT PKD study. I felt it was good news, and it was bigger than just having found the perfect cleaning product that gets grease off my microwave. And I was surprised when, not long thereafter, I got an email from a friend who expressed her deep concern about my health, not having known that I have a life threatening genetic disease that makes my kidneys look like moldy footballs.

Not long after that, I was chatting with a friend about healthcare. Her husband and my husband have the same employer, and we were comparing health plans and talking costs and FSA (whatever they are--is that a real thing?)and I mentioned offhand that we pay out of pocket quite a bit each year with all my appointments, and that it's ridiculous that I have a $35 co-pay to see my nephrologist.

She gave me a weird look and said, "Why are you going to the nephro whatever so much? What are your issues?"

I was genuinely surprised she didn't know. I told her about my PKD. She said, "I didn't know you had a kidney disease. You've never talked about it before."

I haven't? Really? I THINK about it all the time--how can I not be TALKING about it all the time?

So I guess it's good that I'm not talking about it as much as I'm thinking about it.

It could also mean that I think I'm talking about it because I'm answering some crazy voices in my head and not actually communicating with real people ever.

Yeah, that can't be good.

A love story

2009-03-29T19:47:00.000-07:00

It's not often that PKD makes the mainstream media news. I'm glad to see this article, posted in the Boston Globe. It's a PKD love story. Enjoy!

Another year, another ultrasound

2009-03-27T14:11:00.001-07:00

I'm going in on Monday for my yearly ultrasound, which used to be a little freaky to me. After seeing MRI images of my kidneys, though, the ultrasound will be nothing. It will be like looking at a picture taken with a disposable camera after seeing the same thing photographed with a professional lens. Really, MRI scans are amazing. They are definitely worth the hassle. If more people could see their scans after the fact, I think it could take a lot of the fear and trepidation out of having an MRI.

Well, maybe a little of the fear and trepidation. MRIs are still pretty awful.

And so I have to get up and get to the hospital at 7:30 in the morning and sit around trying not to pee on myself while they get me registered and in the computer and all that jazz, only to find out info that I already know.

My kidneys are big. Very big. The end.

Gotta love modern medicine.

Cruisin'

2009-03-14T19:17:00.000-07:00

Let me just say that I recently returned from a Caribbean cruise with my husband's family. Let me also say that I broke every single dietary rule I have and enjoyed the incredible cuisine this cruise had to offer. Let me also say that it was worth it.

Is that bad?

I'll be a better PKD patient, I promise. Starting....tomorrow.

A boring life

2009-02-12T19:05:00.000-08:00

In 2005, I was living in Northern Virginia, a mom working part time as a speech language pathologist. We had been in Virginia for about 2 years, and our lives had settled, after a rough first year, into a humming rhythym. In fact, it was downright boring.

I commented, lamented, even about this to my husband. We were...grownups. Mortgage paying, homeowning, parenting type grownups. It was a good life. But it felt small. And dull.

In early 2006, I was diagnosed with PKD. Life was boring no longer. And boring looked really good.

It's now 2009, three years and 1 month after my initial diagnosis. We've settled into what a therapist friend of mine called "the new normal". My appointments with my nephrologist, so new and scary at first, are now little more than routine. My renal ultrasounds, so enlightening and horrifying, are now just an inconvenience. And taking daily meds doesn't throw me nearly as much as it did. The new normal indeed.

It's almost boring.

I'm a bit of a Facebook junkie, and although I like connecting with old friends and seeing pictures of past lives, sometimes it makes me depressed, because lots of times I see status updates about cruises, and vacations, and new babies, and exciting adventures. It makes me life seem very dull by comparison. Boring.

I lamented, nay, practically shouted, about our sad and dull lives tonight to my husband, particularly in light of the mound of dinner dishes and never ending stream of laundry that faced me with my better half out of town for the weekend. How I would love to ditch it all and go head for something better, greener pastures, a place without laundry. Because laundry is so BORING!

And then I remembered what happened last time I said, out loud, that my life was boring. I thought of a friend, who's mother is battling a new diagnosis of breast cancer, and how she would probably give a whole lot to go back to boring. Instead, it's going to cost her a breast and her hair for 6 months to get back to boring, but we're all praying she does. Suddenly, boring doesn't seem so bad.

I know people who find great amounts of joy in the every day things. Honor in the ordinary. Sometimes, I'm really good at this, and the power of being a mother and a homemaker overwhelms me, takes my breath away, makes me gasp out loud at the beauty of it all. And sometimes, I find myself crying over my kitchen sink.

So I resolve to be satisfied with boring. With stability, with routine, with a humming rhythym. Because if you complain about boring, you'll never know what you'll get instead.

I'm not making this up to bug you, doc.

2009-01-07T08:38:00.000-08:00

I gave birth to my first child at Massachusetts General Hospital. At the time, it was rated as the second best overall hospital in the country, second only to Johns Hopkins.

Before I had my first ultrasound, I had to empty my bladder. There were signs all over the place, demanding that I do this, and the tech even asked me if my bladder was empty before we started. This was my very first ultrasound ever, so I thought it was normal.

At 20 weeks, I flew from Boston to Utah to celebrate my mother's 60th birthday. My sister and I were driving somewhere, and we got into a car accident. It wasn't her fault or anything, but I was in enough pain and was having enough contractions that I opted to go the ER to get checked out. In retrospect, I probably overreacted, but pregnant woman aren't known for rational behavior.

They decided to do an ultrasound, and I told them, "Go ahead, my bladder is empty". The nurse looked at me and said, "We need to FILL your bladder. I'll put in a fluid IV to get it going quickly."

I was confused. My last ultrasound, I needed an empty bladder. So again, I said to the nurse, "Well, last time I had an ultrasound, they said they need an empty bladder."

She said, "It's impossible to do an ultrasound without a full bladder. Where was this?"

"In Boston. At the MGH. Maybe they have a different kind of ultrasound machine than you do?"

She got REALLY huffy then, and said, "This is the standard ultrasound machine. It's a good machine, and this is a good hospital. You just don't do ultrasounds without a full bladder. Seriously, somebody must have made a mistake when they did your last ultrasound. Or you're remembering wrong."

Not being very familiar with ultrasound, I figured she was right. My bladder filled up nicely (the nurse even complimented me on that, and I remember thinking, 'Like I have any control over my bladder filling--whatever') and we did the ultrasound which showed my happy son, kicking and squirming in his very healthy manner.

I went back to Boston, went back for yet another ultrasound, and kept my bladder full. Then the tech asked me to empty it.

"Don't you need a full bladder to do an ultrasound?:

"No, we can't do an ultrasound with a full bladder. You'll need to empty it."

At this point, I was fully confused, and a little frustrated. Full or empty--which one was it?

I talked to the tech about it, and she was surprisingly understanding. She said that most ultrasound machines do indeed need a full bladder. At MGH, however, they had state of the art technology, stuff that most hospitals don't have, or can't afford. They were the only ones doing it like this now, because it was better. It's the future, she said. And I was mollified, and excited to be where people were on the cutting edge of technology. And I thought dark thoughts about that other nurse, because I'm kind of evil like that.

(I feel I need to point out, however, that I've had several ultrasounds since then, dozens even, and I've always needed to have a full bladder. So I guess the future isn't here yet, or I'm just getting really crappy healthcare.)

Fast forward to yesterday. Yesterday, I had an MRI at the Beth Israel Hospital, a hospital located only a few miles from MGH. I walked in to the room, and said, "Oh, this is one of the open MRI machines." I was also inserted feet first, which was a new thing for me. I told the techs how my previous MRIs had all been in closed machines, with me going in head first.

"Well, all MRI machines are open. Some of them are longer than others, but they are all open."

I said, "Well, mine weren't. And I've always gone in head first."

They looked at me and said, "And where was this?", as if to imply that surely such a travesty could only take place in a backwater.

"Um, Washington D.C."

To their credit, they shrugged, and didn't press it, but I saw the look pass between them that means, "Yeah, this patient is out to lunch. Let's just humor her."

Let me say, THIS DRIVES ME NUTS. I wish that more medical professionals would take their patients seriously. One of the best SLPs I ever met told me that she thinks most patients are almost always right when it comes to describing their symptoms, and that you can figure out a lot just by trusting patients and asking them enough questions to get the info you need. After all, she pointed out, most people are not keen on having invasive, expensive, and uncomfortable testing done on them just for kicks. People don't seek out these things unless something is vastly amiss or bothering them. And most people don't have MRIs or barium swallow studies done on a weekly basis. These are major events that get seared into people's brains. Why wouldn't we remember what happened during them?

I did appreciate that these techs were very open with me, and told me everything that was going to happen. This always makes things better, when I know what is going to happen beforehand. And, I got to see my scans, which made it all worth it. If the patient can see the result the doctor is going for, I think it makes her much more willing to endure the test. Holding your breath for 22 seconds in an MRI machine is not an easy thing to do, and it's not an easy thing to do over and over, which was the case yesterday. There were many times when I thought, "I'm not sure I can take much more of this." But when I saw how awesome the pictures were, how much information it gave the doctors, I was ready to hop back in the machine and hold my breath for however long if it meant getting more of those beautiful images.

What can I say, I'm kind of a dork.

I've been on the other side of the stethoscope, so to speak, working in hospitals with patients in various stages of illness, listening to their chief complaints and trying to come up with a solution for it. In graduate school, my supervisors always emphasized that these were people, sick people who didn't feel well, and we had to be aware of there emotional needs as well as their rehab needs. I'm always glad when, as a patient, I meet a practitioner who has learned this lesson too.

Because, seriously folks, nobody gets an MRI for kicks. And when you suffer from claustophobia, you remember which way you got put into an MRI machine. Trust me.

Wash Out

2009-01-02T08:21:00.000-08:00

I'm not a very good research subject.

I'm in the last few days of the "wash out" stage, where I go off all my previous meds to I can start clean for the HALT PKD study. The assignment is simple--take my new meds every day, and take my blood pressure every other day.

Apparently, that's just too much for me to handle.

Yeah, over the holidays, I had a hard time keeping up with the blood pressure readings. I did the best I could, and never skipped more than 2 days in taking a reading. Does this mean I get kicked out of the study? I hope not, but in a few days, I will be returning to Boston with a sheepish face and an incomplete log. Do you think they will still give me free food?

I'm actually a little nervous about this next appointment. It's a biggie, with the MRI looming large. I've had two previous MRIs, and I don't like them. I do okay, and I keep myself calm, but I come up with all kinds of scenarios that creep into my mind as I'm lying motionless, unable to move or help myself in any way. One time I imagined that there was a terrorist attack on the hospital, my technician got hit on the head, and I was stuck in the machine, alone, and died of thirst because nobody knew I was there. Since an MRI machine's walls are like a mile thick, nobody would hear my screams.

Yes, I know. I'm totally morbid. When I tell my husband about this kind of stuff, he's constantly amazed at my totally freaky imagination and tells me I should write a murder mystery or something. You know, so I could get paid for freaking myself out.

Anyway, I'll keep you posted on the appointment. And if anybody has tips on getting through an MRI that don't involve imagining a terrorist attack, I'd love to hear them.

HALT PKD study

2008-12-16T06:15:00.000-08:00

Being a research study subject rocks.

I just got back from my screening appointment to be a part of the HALT PKD study, which Dr. Steinman is conducting out of Beth Israel Deaconess Hospital, in conjunction with Harvard Medical School. It was actually kind of fun.

They took some blood, fed me, talked to me about every detail of my life, explained the study, gave me some info, explained the study again, took some urine, fed me again, and then let me talk to a dietician who told me that she's more concerned about increasing my intake of broccoli than she is about restricting red meat. (Woo-HOO!) They paid for everything, including cab fare to and from the hospital, as well as my plane fare. This is good stuff.

So, what is this study? I'll try my best to explain, although I'm sure my own understanding isn't quite right. Basically, they are trying to figure out if keeping a low blood pressure using ACE Inhibitors and ARBs (Don't ask me what that stands for--I've totally forgotten, as it was a seriously $5 word) has a positive effect not only on hypertension, but also on the development of the kidney cysts themselves. And, if it DOES have a positive effect, they want to know how low the blood pressure needs to be--standard, 120/80, or lower than that?

If somebody else has a better explanation for the HALT PKD study, please share.

Anyways, right now I'm in "drug wash-out", which means that they took me off the ACE inhibitor I was on, and put me on a beta blocker (which doesn't have anything to do with kidneys) to keep my blood pressure under control as my system washes out the lisinopril, the drug I've been taking for the past 6 months. That's the ACE inhibitor they want to do the study with, so I have to start with a clean slate, or, in this case, clean blood, if you will. I need to take my blood pressure every other day, 3 times a day, and this beta blocker once a day. Then I go back at the beginning of January, and things really get moving then. I'll give them more blood and a 24 urine, and they will give me an MRI and hopefully a few more free meals.

I told my parents all of this, and my dad said, "Who is going to pay for all that? Does your insurance cover this?"

Oh, the beauty of being a research subject. I pay for NOTHING, nada, zippo, zilch, and I get my kidneys imaged every 6 months. Even in these tough economic times, science has to go forward. Harvard, whining about losing millions from their endowment in the last year, still has a few million sitting around, and NIH can apparently still afford to cough up some dough as well.

And being a study subject is way better than being a patient. I didn't even have to put on one of those goofy gowns. I was hardly left alone, with everybody coming and going, and they were quite willing to cheerfully serve my every need. This is all still taking place in a hospital, of course, so it's not like I'm hanging out in the Hilton or anything, but it's still the nicest hospital room I've ever been in (except for the room where I delivered my daughter. Now that WAS like a hotel room, complete with pull out bed for my husband, but the recovery room totally, totally sucked, which makes me feel like it kind of made up for the earlier luxury).

So, I've got a new blood pressure cuff and some new meds, and I got to say hello to a city I dearly love. Not a bad start to the week.

ARPKD sucks

2008-11-17T16:40:00.000-08:00

I don't have ARPKD. I have ADPKD, the adult onset type. But here is a video to touch your heart about what some families who struggle with ARPKD are going through:

Need a tissue? Yeah. Me too.

6 month check up

2008-11-11T11:11:00.000-08:00

Everything was great. Everything except that pesky creatnine.

It's up. From .8 to .9. Now, other doctors will tell you that I'm still in the range of normal. They'd be wrong.

My nephrologist carefully explained that it's not about the range, it's about where you started. My creatnine started at .6, which is really pretty good. Now, 2 and a half years later, it's .9. That means I've lost 40% of my function in that time.

At this rate, my nephrologist calculated my kidneys would fail in 3 years.

She thinks that won't happen, though. She thinks that my function will level out--sort of hit a rock bottom quickly, and stay there. She said she doesn't think anything will need to be done for at least, oh, 5 years.

5 years.

I told all of this to my husband, and then I said, "We need to think about the next five years. We need to think about what we want to do, what we want to accomplish, the vacations we want to take. Because everything could change in 5 years."

I don't know for sure that I will be on dialysis in 5 years. I don't know for sure how things will change.

I do know for sure that we are going to the Bahamas this spring for our 10th anniversary. Yessiree, I'm gonna milk this thing for all it's worth.

Losing weight

2008-11-08T11:56:00.000-08:00

I was doing yoga the other day (the first time in way too long), and had one of those moments. You know, those moments when you catch a glimpse of a part of you and think, "Whoa. Is that me?"

These days, I'm pretty thin. Most women, I know, would say, "Tough life! Oh that we could all have your problems!" And I suppose I'll take the problems that come with being thin that the ones that come with being fat, but still, being thin isn't always a picnic.

I think that I share a commonality with people who are overweight. I actually think about food all the time. But my thoughts aren't happy ones (although I don't know if obese people have happy thoughs, either.) I'm constantly thinking about what I should make for dinner, if I'm eating enough protein, if my kids are getting what they need.

These thoughts depress me.

And then I don't eat.

This is not to say that I'm depressed. I'm fairly certain I am not. But when it comes to food, I do get depressed. I get depressed because I can't just toss a turkey into the oven, or I can't just put together a chicken salad. And I miss steak. Like, a lot.

I've never been one to stress eat. That's not my style. My depression style (is there such a thing? I should totally get credit for inventing it if there isn't) is more of a curl up and hide under the covers kind of deal. Food isn't really something that feeds my soul, although my husband repeatedly tells me that I'm much happier with calories in my body. Go figure.

I know I have to figure this food thing out. I saw a dietician, and she was absolutely great. But it's hard to make these changes, even as I come up on the anniversary of my diagnosis and the year mark of vegetariansism (holy crap, where does the time go?)

But I can't spend another year not eating. Even yoga can't replace the muscle mass I'd lose. And then scrawny wouldn't even begin to describe me.

For the woman who asked about follicular cysts

2008-10-31T19:16:00.000-07:00

I got an odd email the other day, where somebody was asking me about follicular cysts. I can only assume she means something along the lines of polycystic ovarian syndrome (PCOS), something that I know only the vaguest details about. Her daughter apparently has it, and she wants to know my treatment plan.

I'm happy to announce that I have no treatment plan for my follicular cysts, because, as it happens, my ovaries are fine. They're quite perfect, actually, and I know this because after I was diagnosed with PKD, I demanded that my ovaries be imaged as well. I was surprised to discover that they look exactly like the pictures in my anatomy book. Most of the time, I just assume the pictures are sort of rough sketches of the human body, as I've seen many things in real life that bear absolutely no resemblance to artistic sketches in a textbook (polycystic kidneys being on top of that list, by the way. Seriously, it made me laugh when I looked up the drawing. It looked like a little kid had taken a crayon and drawn a bunch of spirals, and then labeled it.) But seeing my ovaries lookin' so awesome gave me new respect for anatomy book artists. Whoever they are. (Yeah, seriously, who does do that stuff?)

So, I have awesome ovaries. And I have never even written an ode to them. And they've never complained about that. What good little gonads.

I can't help you, woman with the daughter whose ovaries are not awesome. I wish I could, I really do. But PKD and PCOS are really very different. One means you have a hard time having kids. The other one means you have a hard time having kids AND you get to look forward to dialysis, a kidney transplant, and possibly early death. See? Totally different.

HALT PKD study

2008-10-08T19:09:00.000-07:00

I'm in.

Dr. Steinman persuaded me by saying, "Hey, you wanna do it?" Seriously, how can I resist such mind control?

Actually, truth be told, I'm doing it mostly for my mom, who thinks that if I am under the watchful eye of Dr. Steinman, perhaps everything will turn out okay in the end. I try not to tell her that she's in denial, that just because Dr. Steinman is you know, THE guy, that doesn't mean he is God and can reverse the whole kidneys turning into pus-filled bags of slime process. (That last part is a quote from my husband. I keep trying to tell him that cysts are fluid filled, not pus filled but he retorts, "Pus is fluid". So, just go with it.)

I'm actually kind of excited to be a psrt of this study. With my work as a speech therapist, I'm not unfamiliar with research methods and significance ratios. Although I may have just misused that term--it has been a while since I took research methods, I guess, so maybe all I'm doing is proving that I'm basically clueless after all. Whatever. What I'm trying to say is that I think medical studies are cool, I've read a lot of them in graduate school, and it's fun to think I'll be a part of one. And, if along the way, I get to rub shoulders with the people who are the best in their field, well, bonus.

Of course, thre is also that extra added perk of a paid trip to Boston twice a year without my kids. Not that it's always fun to be somewhere without the people you love, but sometimes it is. Yes, it is.

Some of you asked how I am feeling physically. I'm doing pretty well. I haven't had any side effects from the new meds. Quite the opposite, actually. I feel a little bit more energized with them, which makes me think I was definitely feeling that "fatigue" side effect with the last batch. Of course, it could have also been the whole baby not sleeping thing, too. Being up all hours of the night tends to lead to fatigue, too. Go figure.

So overall, things are good. I recognize that this will not always be the case, and I'm grateful. So grateful. Seriously, nothing like having a life threatening disease to make you appreciate the little things. And the little things are pretty great right now.

Success!

2008-09-22T18:08:00.000-07:00

The PKD walk last weekend was a huge success, unless, of course, you count the 10 heart stopping minutes where I couldn't find my son, and I suspected he had wandered off the trail to meander into a busy street (a suspicion that turned out to be well-founded, by the way), and was about to hunt down a ranger so we could organize a search party while I envisioned taking his limp body home to his father who would howl and wail and plead with me to make it not so, before he came toodling up the road after a nice motorist stopped and told him that his mother was freaking out. Yeah, other than that little blip, we were all good. (And it's a good thing I'm blonde, because I'm sure that little episode gave me several gray hairs.)

The total tally for my team (which consisted of me and my two children): $850. That's a big WOW. Thank you, thank you, and thanks again to everybody who donated to my team. It's truly amazing to me, and I appreciate it so much. Total tally for the walk was unknown, but I do know that it was close to $30,000, which isn't bad, considering this chapter of the PKD Foundation has been in existence for less than 5 years. We're movin' up, baby, and I say that with the complete confidence of a person who does no work whatsoever for the walk, and reaps the rewards of other people's efforts.

What can I say, I'm good like that.

It's that time of year

2008-09-03T19:27:00.001-07:00

The air is getting cooler, hurricanes are on the horizon, lunches need to be packed for little kids who are getting on that big yellow bus. Oh, and the PKD walk. That too.

Last year, you all were so generous. It was amazing to me. It still is. So many people did so much to make the walk a huge success, including people who don't have PKD, or who don't have family members hurt by PKD. Just folks wanting to help out.

If you'd like to help with beating this disease that to date has no known treatment other than a full on transplant and dialysis, please visit my Walk for PKD page. And please, know that I am very humbled by this whole thing.

Venison Stew

2008-08-28T16:14:00.000-07:00

I met a hunter today. Like, a real live hunter, as in, he's a man who has spent a large portion of his life providing for his family by hunting their food. You just don't meet men like that anymore.

He had an entire photo album full of pictures of his various hunting activities, which are certainly not limited to hunting deer. He traps beavers, otters, turtles even, although he said that he stopped trapping turtles because it sort of made him sad. Plus, he couldn't justify it economically. Turtle shell soup is just not that big a seller here in the states. Go figure.

He also complimented his wife a lot, a woman he clearly loves dearly, about her cooking skills with all the game he would bring home. She would cook anything he'd bring her, including muskrat, and he described all the different ways venison tastes, according to its diet (which, as you can imagine varies widely).

So he offered to make me some vension stew sometime, and I just didn't have it in me to refuse him. He started talking about all the ingredients that can make a rich broth, and it sounded delicious. I told him my husband would LOVE some venison stew, and he said, "You don't like meat?"

I smiled, gave a little sigh, and said, "It's a long story."

I briefly explained my issues, in the vaguest term possible. I told him that I do eat chicken about 3 times a month, and that I could make an exception and slip in some venison. That seemed to please him, and he waved me on my way.

I've never actually had venison stew. I'm looking forward to it, actually. Do you think Dr. Steinman would approve? Probably not. Oh well. How often does one meet a bonafide hunter? It's a once in a lifetime culinary opportunity.

I'll keep you posted.

Summer is over. Time to get moving.

2008-08-26T07:04:00.000-07:00

School starts next week. Does it make me a bad mom to say that I can't wait?

DH wants us to run a half marathon at the end of November. I agreed, and in typical fashion, my husband proceeded to print out an entire traning schedule so that we will be ready in 3 months. His enthusiasm is catching, so I got up yesterday morning, and we tagged team with the kids while we each took our turns running the 3 miles the training schedule said we should.

I'm sure my husband ran the whole time, and probably went a little farther than 3, just for good measure.

Yeah, um, I didn't quite make it to 3 miles. And I'm hurtin'. Boy, am I ever.

It's frustrating, actually. I used to run 3 miles, no sweat. I even got to the point where I understood the runner's high, the feeling that you could go forever, and that you would actually enjoy doing it. It's just as awesome as everybody says it is.

Totally NOT feeling that today. Or yesterday. I'm very far from where I used to be. Blech.

My only hope is that I can get to where I was quicker than I think. That if I perservere, this half marathon will be no sweat. Yeah, that's what I told myself this morning when my quadriceps groaned in protest as I got out of bed.

Oh, but I have a long way to go.

Side note: Some people have asked how they can donate to the PKD walk, which will happen on Sept 20th. I've been a little swamped with internet stuff lately, and I haven't gotten around to setting up my online donation site. I appreciate so much everybody's interest and support. I'll let you know where and when you can sponsor our family's team. Thanks again!!

The Price of Fun

2008-07-25T12:29:00.000-07:00

We have some friends who like to throw lavish parties. I'm not really the party type myself, but hey, if somebody else is in charge, I'm there.

Last week, they did their ultimate summer bash, the famous Slip 'n Slide party. Basically, they set up a giant slip and slide in their back yard, turn on 6 sprinklers or so, and let everybody have at it. Kids, of course, go down that slide about a thousand times, but some adults get in the act, too.

My hubby and I weren't about to let all the kids have the fun, so we slipped and slid (slided?) to our hearts content, laughing and trying to make it to the very end of the slide without stopping. DH even tossed our baby down the slide, just to see how she'd take it.

Yeah, she was not amused.

All this slipping and sliding is done in sort of an out of control manner, and it works best if you run down the top of the slide at top speed, and then sort of throw yourself down on your stomach once you've got some momentum. Of course, you sometimes just sort of slip to your knees, or your bum, or kind of in between the two. Good times, I tell you. Good times.

I was having fun flailing all about, and then I stood up after a particularly crazy run, and felt a deep pain in my side.

It suddenly occurred to me that my nephrologist had recommended that I stay away from contact sports, or doing anything that might hurt my very enlarged kidneys.

Crud.

I'm guessing that throwing myself down a slip'n'slide is not on my doctor's approved activities list.

I woke up the next morning sore all over, from my hamstrings to my deltoids, but my abdominal region was especially sore. Clearly my underworked abs got a serious workout slipping down that slide, but it was more than that. My right kidney was enlarged, and tender to the touch. And I looked sort of lopsided in my bathing suit. I said to my sister that maybe it was nothing--maybe I'm just getting fat.

"Does FAT hurt to touch?" she said.

Ok, she had a point.

It took almost a week to feel better again, and even now, it still hurts if I poke it in just the right spot. It's a reminder of a few things: 1) How totally and completely screwed up my insides are (seriously, normal people do not poke at their bellies to feel their kidneys) and 2) how I have to keep things in check, because I'm not like everybody else. And I hate that more than all the pain.

Sure was a fun party, though.

Cooking strike

2008-07-19T17:48:00.000-07:00

Yesterday was a bad cooking day.

It wasn't that the meal was bad, really. It was the chickpea meal that we eat when I can't figure out what else to eat, which is always fine in a pinch. Only I tried to make home-made pita bread to go with the chickpeas, and the recipe was a little more time consuming and overwhelming than I had anticipated. So come 6 o'clock, my husband found me covered in flour, rolling out pitas, the baby screeching and my 6 year old grazing on popsicles while playing a game on the computer that had a soundtrack that felt like it was boring into my brain. Oh, and dinner was probably about a half an hour away.

My eternal companion volunteered to go the store to grab some milk, and he even volunteered to take the baby because he could tell we both needed a break from each other. I told him it sounded fantastic, and we proceeded to search for my keys for the next 15 minutes, all the while with the baby crying, the pitas cooking, and the beans burning.

I swear, those keys were hiding just to piss me off.

I got so frustrated with it all that I threw a dough ball across the room. It gave a satsifying smack against the wall, then bounced off and rolled into the playroom. The dog went for it, but my husband caught her before she could make herself sick eating uncooked yeast. Good thing, too, because having to deal with dog barf at that moment may have sent me directly to the loony bin. Do not pass Go, do not collect $200....

I did my best not to burst into tears, as my husband and son looked on. I took deep, cleasning breaths, got dinner on the table, and remarkably felt less like attacking everybody with a spatula once I had some calories in me.

(Funny how that works, huh?)

After dinner, when the kids were down, the dog walked, and the kitchen cleaned (BLESS that man of mine--he washes a mean dish), he and I talked about my meltdown in the kitchen.

"I'm tired of cooking. It depresses me. Every time I face the kitchen, it reminds me of all the changes we've had to make because of my PKD. And I hate having PKD," I told him, this time letting the tears come.

I'm not like this all the time, I promise. For the most part, I've been able to look at all of this as a good thing--we are eating healthier than we ever have before, my weight is good, I've been forced to learn some advanced cooking skills that I would have never learned, and I've made some pretty impressive dishes, if I do say so myself. But yesterday, the combination of a couple of lousy nights with the kids (when one parent is in one room rocking the baby and another is in the other room rocking a sobbing 6 year old who has an outer ear infection, and it's only 2am, you know it's gonna be a long night), a crazy summer schedule, and good 'ol PMS turned me into a dough-ball throwing, spatula wielding, PKD hating banshee from hell.

That last part is actually a direct quote from my husband.

Yeah, it wasn't pretty.

So, this week, I'm on strike. Or, rather, I get the week off. I told DH that I would get up with the kids to feed them breakfast and get my oldest off to swimming if he would take responsibility to plan, shop for, and put on the table a meal for our family that I didn't have to think about. He's excited to be cooking, I'm excited to NOT be cooking, so hopefully it will be a win-win.

Tomorrow we're having stir-fry.

This week may very well go a long way in saving my sanity.

Now maybe I can do headstands without having a stroke

2008-07-05T19:16:00.000-07:00

Last weekend, a friend of mine tried to teach me a new yoga move.

Headstands.

She made it look simple. Just interlock your hands, squeeze your head with them, and then straighten your legs. Viola--head stand.

Now, I don't mean to be a pain in the butt young whipper snapper, but this woman has some years on me. I figured if she could do it, I could do it.

Oh how very very wrong I was.

After almost knocking over everything in sight with my flailing legs, I stood up, laughing a bit, flushed in my face. And my heart was racing.

5 minutes later, it was still racing. Faster.

I turned to my new friend and said, "Wow, what a work out! Is that stuff supposed to make your heart race?"

My friend look at me, puzzled, and said, "No. Not unless you have high blood pressure, or something."

Oh, yeah, that. Forget to mention that yes, I do have high blood pressure, oh, and um, it has been a few days since I've taken my meds because I'm currently on vacation and sorta forgot to pack them and I always run a little high at night and I'm supposed to be on a different medication entirely because my old meds aren't exactly doing the trick and I've lost 30% of my kidney function in 2 years and I should have gotten off my old meds ages ago only I didn't because I like nursing my baby because hey, she's awfully cute and did I mention how fun it was to learn how to do a headstand?

Well, nothing like a night spent wondering if you are going to stroke out in the morning to make a gal hightail it to the pharmacy for a little sumthun' sumthun'.

The good news is that my BP is in the low 120s/80s, and my new medication costs $8 less.

The bad news is that I still suck at headstands.

Fantasy dinner

2008-06-20T19:56:00.000-07:00

The other night I plunked down a rice/cheese/spinach/sunflower seed casserole on the table for dinner. It was, as I call it, an adequate meal. Nothing fancy, nothing hard, just, you know...adequate. As in, something not gross that my family can eat to stay alive that won't endanger my kidney function.

My son stared at it, looked at me, and said, "Is this all there is for dinner?"

"Yes," I told him. "Eat it".

He stared at it, and said, "No salad, even?"

"No salad. We don't have any salad."

He stared at it some more as I dished some on his plate. He looked up at me, and said, softly, "Mommy, I want a hamburger."

I felt a surge of fury, thinking of all the things I could say to him, about how hard I had worked on this meal, how we should all be grateful for having food at all, how he needs to eat what he is given without complaining, how spinach is good for you.

Instead, I looked into my sons big blue eyes, a little kid pleading for some beef, and my fury dissipated. So I said, "Oh yeah? Well, I want a steak."

He looked at his dad, and said, "A steak? What's a steak?"

(Yeah, this is what happens when you raise a kid eating vegetarian. The other day he told my sister, "What's a chicken breast?" Nice.)

I responded, "A steak is a big 'ol juicy piece of meat. Kinda like a hamburger, but even better."

His eyes lit up and he said, "Ooh, I want a steak too! AND a hamburger, AND a cheeseburger, and some chicken on the bone!!"

I said, "I want a steak slathered in butter and some sauce that is REALLY REALLY SALTY!!"

He laughed and said, "I want every steak in the whole world!"

At this point we are all laughing, so I said, "Ok, kiddo, let's eat our gross healthy food instead."

DH guffawed and said, "Well, I think it's good."

I reached over and stroked my beloved's cheek and said, "You are a good man to lie to my face like this."

Our meal went off without further comment, with my son eating enough of the healthy stuff to satisfy me that he wouldn't starve. And when he asked for a PBJ right before bedtime, I gave it to him without comment.

We didn't keep the leftovers.

And I still want a steak. A salty one.

I've weaned my baby

2008-06-17T15:17:00.001-07:00

Yessirree, I have done it. I'm ready for that new medication that is supposed to work miracles with my blood pressure. She's all set. What am I doing? Oh, this? This isn't nursing, this is just some comfort sucking. She's totally weaned. Seriously. Oh, this nursing bra I'm wearing? I mean, it's not really a nursing bra--it just supports me really well, and is sort of convenient if,you know, just in case she needs something, like if she's really distraught, or if she's really out of control, or if I'm lying on the couch reading my book and she comes wandering up and pulls at my shirt wanting to nurse. You know, emergencies.

But really, other than a little swig in the morning after she gets out of her crib, maybe some alone time with her in the afternoon before she goes down for a nap, and some nursing in the middle of the night when she wakes up and won't go back to sleep, she is totally done.

Totally. Absolutely. 100% weaned. You betcha.

Excuse me, I must go. My milk is coming in.

Swim suit shopping 101, or seriously, can I take a course for stuff like this?

2008-05-22T21:10:00.001-07:00

Ok, it's that time of year again. Swimsuit season. And it's not like I'm a total beach girl or anything, but the reality of life with a child on a swim team is that I spend a LOT of time at the pool. I gotta look good, people.

So last year, my baby was born at the beginning of swim season, and I just gave it up for lost that I would look remotely appealing in a swim suit. I sort of went for 'not grotesque', and called it good.

This year, well, I have no excuses.

Now, I may have mentioned before that my kidneys are huge. And if I needed any reminder of that, it was given to me by my nephrologist last week, who said THREE TIMES, "Your kidneys are HUGE!" (It doesn't sound quite as rude as it looks in print, because my doctor is actually from China, and her English is sometimes broken and not entirely correct, so I cut her a lot of slack. Plus, she's really friendly and smiley and stuff, so I like seeing her. Picture a small, relatively well-dressed Chinese woman in her 40s saying in a loud Chinese accent, "Your kidneys are HUGE", and you get the picture.)

Ok, anyway, my point is that sometimes I wonder if my HUGE kidneys affect my waistline. Part of me hopes that is the case, because then how I look in a bathing suit would have NOTHING to do with my Oreo eating habit. (shhh, don't tell Dr. Steinman!!) But part of me hopes that my kidneys have no affect whatsoever on my waistline, because an Oreo snarfing habit is way easier to fix than, you know, ballooning polycystic kidneys that displace all the organs in your abdomen causing you to look about 5 months pregnant.

And I haven't even gotten to the stretch marks. Suffice it to say, what with the Oreos, the ginormous kidneys, and the stretch marks, nobody, NOBODY wants to see my belly. Not even the teeny weeny bit that is exposed with the cute little tank-ini I wore for years before all of this action around my waistline happened.

Okay, the point. Yes, I'm getting to it.

So I was in Target the other day, looking for some stuff (Because Target has great STUFF), and I saw this sassy red two piece swimsuit on the clearance rack. IN MY SIZE. For EIGHT LOUSY BUCKS. So I scampered into the dressing room and tried it on, and low and behold, I actually looked darned good in it. It was so cute and flowy, not tight at all around the belly, and it covered my waist completely without looking too matronly. Not too revealing up top, and the red was a great color on me. And did I mention it was 8 bucks? Sold, people.

I took my STUFF home to show hubby, and was so excited about my new suit that I ripped off all the tags and put it on again, just to show DH what a smart and sassy shopper I am (because, you know, men LOVE conversations about smart and sassy shopping), and as I am twirling around in the mirror, I noticed one of the tags that I've ripped off.

It says "Liz Lange".

Hunh. Liz Lange. That's funny. That's the brand of clothing I used to wear when I was....

And the awful truth dawned on me as I stopped twirling. A maternity suit. I had bought a MATERNITY suit. A swim suit for pregnant ladies. The only suit in the entire store that looked cute on me was one that was built for watermelon bellies.

No wonder it was flowy.

Maybe I'll just tell everyone at the pool that my next baby is due in November, and leave it at that.

Creatnine .8

2008-05-15T16:09:00.001-07:00

Which isn't really all that bad, considering normal levels are around 1.0. But given the fact that 2 years ago, my creatnine was .5, well, that changes things. My nephrologist told me that I have lost 30% of my kidney function in the last 2 years.

Those are some sombering numbers, baby.

So, I'm not exactly a math student, but if I continue to lose kidney function at this rate, I'm looking at a trasnplant BEFORE I'm 40. Bummer.

Although, I suppose that if I'm young enough, they might be able to give me liposuction while I'm under. Maybe some Botox, some collagen--you know, just shoot the works.

Looking for a silver lining here, people. Just looking for the silver lining....

Ode to my gall bladder

2008-05-10T19:01:00.000-07:00

1)Liver
2)Biliary Tree
3)Bile Duct
4) Gall Bladder

I don't know much about you,
though I've seen you on the screen.
"An organ, not a cyst",they said
and I think your bile's green.

With all my organs festering,
you are the most pristeen.
The only one worth donating.
Well, you and Mr. Spleen.

My liver's shot, my lungs get tight
My eyesight's not so keen.
We all know how the kidneys are
They're the lumpiest you've seen.

But you, dear bladder, sack of juice,
with healthy, slimy sheen
You're the bomb, da man, the whole shebang-
I dub you Organ King.

The Magician's Nephew

2008-05-06T11:01:00.001-07:00

My 6 year old son is really starting to get into The Chronicles of Narnia. They are just easy enough for him to read by himself, and just challenging enough that he doesn't mind if I read them to him at night. Having devoured The Lion, The Witch and The Wardrobe (the easiest, and in my opinion, best book of the series), we are on The Magician's Nephew, which is book #4 or #5 that C.S. Lewis wrote, but which has since been renumbered as #1. Blasphemy, I say, to renumber the serioes like that, but whatever.

For anybody who does not have a 6 year old currently obsessed with Aslan, here is the basic plot of the book. Young Digory goes to London for the holiday with his sick mum so they can all be looked after by his aunt Letty and his eccentric Uncle Andrew. Digory learns that Uncle Andrew has been dabbling in magic, and has suceeded in forging magic rings that will transport people to other worlds. Through a series of mishaps and misadventures, Digory ultimately ends up in Narnia before the beginning to time and witnesses the creation of the world. His focus then becomes on procuring something in Narnia that he can bring back to his world to cure his mother of her mysterious illness.

This sick mother plot caught my son's attention. Like, a lot.

He would keep interjecting questions like, "WHY is Digory's mom sick?" and, "Is she going to die?" "What is going to happen to her?" and again, "WHY is she sick? What does she have?"

Perhaps it is just my mothering paranoia coming through, but it made me wonder how much he has internalized about HIS mother being sick. Luckily I am able to lead a fairly normal life right now, but there are things that he has noticed and has to live with. Yesterday, he moaned that we haven't eaten chicken with bones (yes, he digs drumsticks) for a LONG time. He said, "Why don't we eat chicken anymore? I miss chicken."

Yeah, you and me both kid. So I told him we would go to Chick-Fil-A after his T-ball game. I've discovered that for kids, there are few things a good fried meat product and a milk shake can't solve.

I don't know how to cushion my children from PKD, or even if I should. Part of me wants to see them grow up into productive, involved activists who will be able to fight for what their mother and they and their future children need. The other part of me wants to curl up under the covers with both of them with our books of fantasy and tell them in the real world nothing bad happens to anybody, ever.

It's what keeps us from having more kids, really. My husband keeps reminding me that that nobody benefits from having a large family if their mother is too sick to take care of everybody, or, worse, not around at all.

In the end, Digory's mother is healed, as the magic from Narnia makes her well.

See? Perfect ending. Here under the covers with my book, things look great. I think I'll stay awhile.

And to think of all the money wasted on pharmeceuticals

2008-04-30T08:08:00.001-07:00

This story claims that chocolate reduces pregnancy risk, specifically the risk of pre-eclampsia, by reducing blood pressure.

Move over, PBJ. I'm having organic dark chocolate with a side of Rolos for lunch today. And don't forget the M&M's for dessert.

Government task force seeks Child Development Specialist

2008-04-21T14:42:00.000-07:00

Every time I go to the hospital for lab work, I have to register. It's a very time consuming process, and very lame, especially when I am only there to drop off a 24 hour urine sample. I have in the past tried to just dump my pee on someone, but no, I have to sit and wait to be called, and then go through the "registration" process, which consists of somebody asking me my name three or four times, and checking all of my insurance info, my address, etc, etc, etc.

One of the questions is about employment. I'm technically not employed at the moment, but I am a trained and licensed Speech Language Pathologist. Of course, if I tell people that I'm an SLP, they inevitably ask who my employer is, or an address, or something, and I am forced to admit that I'm not working. "Then what do you do right now?" is the next question, and I have to tell them I'm a mom.

"Homemaker" is the technical term that gets written in the little blank box. And I confess. I hate it when they write that.

It's not that I hate being a homemaker. Ok, cleaning isn't exactly my favorite thing, and yes, I know, there are all kinds of quotes from all kind of people about how being a homemaker is a wonderful grand thing that is the most important occupation in life.

But even if I believe it, or my husband believes it, or a million Mormons believe it, I still know medical personnel would need some convincing. And in their minds, "Homemaker" often translates to uneducated, unemployed, ignorant woman who is largely disconnected from the outside world.

I don't mean to speak slightingly of medical personnel, really I don't. I've worked with doctors, so I know a little about how things go down. When you have to explain medical things to people who are not familiar with medical terms, it helps to have an understanding of where they come from, a baseline, if you will, so you know if they will understand the word "larynx" or if you should use the word "voice box". This is just an example from my own experience, and I'm not a doctor. I'm sure the communication barriers are even bigger for doctors, which may be one reason why they generally suck at it.

Moving on....

When setting up my blogger profile years ago, I couldn't bring myself just to put SAHM (Stay At Home Mom.) Being a mom means that you have be the expert in so many things, including but not limited to early childhood development, nutrition, sleeping patterns, growth cycles, med administration, gross and fine motor skill development, and, last but not least, psychological warfare. "Homemaker" doesn't even begin to describe it all.

So in my profile, I try to make a little joke, and I call myself a Child Development Specialist, for all the reasons I listed above.

Imagine my surprise, then, when I opened an email this weekend addressed to "Heather O., Child Development Specialist".

It was from Dan Larsen, President of the PKD Foundation. At first I sort of thought it was a joke, as I know and like Dan Larsen, and he can crack a joke or two, I suppose. But it wasn't a joke, or at least I don't think it was. It was information about a task force that the PKD Foundation wants to set up to address efficacy issues related to legislation and liasions with law makers. It sounds like an interesting project, to be sure, and I'm honored to be invited to be a part of it. But I'll admit I had to giggle when the "Invited Task Force Members" list came up, and there, among some other highly qualified individuals, was my name and resume, which included three lines:

*Former Speech Language Pathologist
*Child Development Specialist (A mom)
*Author of "Living With PKD", blog listed on PKD Foundation's website.

If that doesn't sound like task force material....

I really am excited to be a part of this thing, even if I do find myself underqualified. I've never done anything like this before, and if nothing else, it promises to be a good learning experience (and probably good blog fodder, which is always a plus in my book).

I just hope nobody asks me any questions about my supposed expertise in child development. Expounding my views on potty training with Mike 'n Ikes is probably not all that helpful to the cause.

Bean Girl

2008-04-13T18:44:00.000-07:00

It was Spring Break for my son this week, so I took a trip with the kids to see their grandparents. My mother told me in no uncertain terms that she hadn't the slightest clue what to feed me, so if I didn't want to be eating out (something that can get tricky if I'm really trying to be good), I had better be prepared to cook.

I really didn't mind cooking. I went simple--black beans and rice the first night, salmon with potatoes and veggies the next. Not too freaky, not too out there, and not a bit of quinoa in sight, as I think the thought of eating quinoa might just have pushed my very carnivorous parents over the edge.

My black beans and rice recipe is also very far from exotic. I literally got it off the back of the can one day when I was searching for something to make for dinner. Sauteed onions, garlic, and green peppers in olive oil, a can of black beans (low sodium, of course, or drained and rinsed), some spices (I went with cumin and lemon pepper), and then a few tablespoons of vinegar. Simmer, stir, serve with brown rice and you're good. Another bonus--all told, this meals costs like a buck fifty. Well, I added a fruit salad, which ups the price a bit, but seriously, beans and rice are an awfully cheap way to go, espeically if you buy beans dry and in bulk.

Anyway, my dad came home after we had started eating, sat down and said, "Well. Looks....healthy."

"Yes! Heather cooked it! It is healthy!" said my mother, a little TOO enthusiastically.

To his credit, my father, a man who has been known to turn down a meal of curry chicken for a bowl of milk and bread with sugar sprinkled on top, ladled himself a big 'ol helping of beans and poured them over a big patch of rice. He took a bite, looked down, swallowed, and said, "Hey, this is good!"

I laughed and said, "You sound surprised."

He shrugged and said, "Well..."

He cleared his plate, had seconds, and even polished off some of the leftovers next day at lunch.

See there, it makes me feel good when people realize that beans are our friends. I'm actually growing rather fond of them myself.

So I guess you can call me Bean Girl. Educating one carnivore at a time.

Yearly ultrasound

2008-04-07T11:59:00.000-07:00

I got to see my spleen today. Last year I was pregnant, so they couldn't locate my spleen with ultrasound. So now I officially know where every organ is inside my body. Neat.

The good news is that the kidneys seem to be a stable size, which means that they haven't grown since the pregnancy. To me, the kidneys seemed to have more cysts, and looked more misshapen, but we all know that it's size, not shape, that matters.

So, that's over. I don't have to look at my kidneys for another year. Too bad. I always like being a good educational experience for others. And you know, it's always good to get acquainted with one's spleen.

Keen WAAAAH!

2008-04-02T10:32:00.000-07:00

That's what we're having for dinner tonight. Quinoa, pronounced Keen WAH! Sorry, the name just lends itself to saying it loud, with some sort of martial art move. Seriously, try it. I mean, you don't picture people kick boxing and shouting, "BULGAR!" But you can imagine the karate kid, balancing on that beach thingie, doing that crane move thingie, saying, "Keeeeeen WAH!" and then landing a fatal blow on the school bully with the final syllable. And they all cheered--Keen WAh!

C'mon, I'm trying to make the best of things. Work with me here, people.

Sometimes I hate having PKD

2008-03-28T19:43:00.001-07:00

That is all.

So that's where that went...

2008-03-26T12:56:00.000-07:00

My husband cleaned out the garage the other day, a task that was beyond odious and for which he has my undying affection. He sorted through the junk (well, sort of, mostly, kinda) and at the end of it all, had a big pile of trash. He called me into the garage so I could look at the pile of trash and see if any of it was actually NOT trash. That can be a dangerous game, really, depending on what kind of mood I'm in. Sometimes I'm in a really chuck-happy mood, and anything I haven't used that day goes in the garbage. Other days, however, I look at something I have completely forgotten I own and think, ooooh, but I really NEED that, and I stick it away somewhere where it sits forgotten again until I sort things out and finally decide that after years of nonuse we can THROW IT AWAY ALREADY, SISTER!!!

Anyway, lucky for all of us DH and I were both in chuck-it happy moods, and I happily declared all of the pile trash, rescuing only a tube of sunscreen and a tube of baby lotion.

Then DH picked up something that looked familiar and said, "Um, I think we need to keep this. I don't know how it got in here, but don't you need it?"

It was my 24 hour urine collection jug.

Oh well, I suppose I do need that, seeing as my yearly 24 hour collection lab work/full work up is coming up next month. It's 4 months late, pushed back because of the birth of my daughter, but it cannot be ignored.

I nodded to my husband, and dutifully took the jug, despite all urges to chuck it and run. I suppose it could be considered a sign of how my subconcious feels about getting poked and tested and ultrasounded (I love how blogging gives you license to use completely made up words) that the collection jug somehow migrated to the trash pile of the garage.

I stuck it in the deep recesses of the front hall closet. Subconcious messaging indeed.

Marrying an optimist means I gave birth to one too

2008-03-17T17:16:00.000-07:00

J is still on antibiotics for his uber-strep. I, of course, am still (and forever) on drugs for my blood pressure issues. We took our medicine together tonight, and I said, “Hey, we both have medicine!”

He said, “But I don’t know why. We’re not sick.”

I said, “Well, you need medicine for your throat, and I need medicine for my kidneys.”

Then I hugged him and said, “I just hope someday you won’t need this medicine.”

He held up a green heart shaped glass rock the “leprechaun” gave him at school and said, “Well, mommy it’ll be okay, because this rock is SHINY! That makes it LUCKY!” And he skipped away.

Lucky green rocks. I’ve got to get me some of those.

I missed the meeting

2008-03-13T20:34:00.000-07:00

Because I am that lame. I never transfered the email about the meeting from my spam folder into my regular inbox, and it got zapped. Here I am, pretending to have some skillz when it comes to email and blogging and such, and then announce to everybody, EVERYBODY reading this blog (all 40 of you, and let me tell you, I love every single one of you) that I'm going, and then I flake.

I feel like such a fraud.

And now I'll never get the wisdom of that dietician who was scheduled to speak, and I will never hear the words, "Why, yes, go back to eating meat" from her lips, which is something that I dreamed about.

Ok, not literally. Just figuratively. Call it a day dream as I passed Outback Steak House the other day.

I'll hit the next one. I promise. And don't worry, I won't go in any Outback Steak Houses on the way either.

Because I'm sure there are plenty of Chick Fil-As.
(kidding)
(sort of)

Lame blogger

2008-03-08T17:45:00.000-08:00

That's me. All day I have been trying to think of things to blog, as I blog at two other places (three if you count my private family blog-yes, I do keep SOME things private. Hard to believe, I know, but there you go). So far, I've come up with very little.

And I think that is a good thing.

I don't have any horrendous health scares to blog about, my children are safe and happy and healthy, and even my baby seems to have stopped pooping in the bathtub, making life much more pleasant all around. My blood pressue continues to be well managed, and that pleases me more than anything. We had thought we would have to increase my medicine, which doesn't sound very fun, but with diet changes and an increase in exercise, things are stable. For now. And I have learned never to underestimate the beauty of stability.

For the first time in a year, I am going to our local PKD chapter's meeting tomorrow. These meetings are always held on Sunday, and last year I didn't make it to any. They conflicted with our church schedule, not to mention the fact that I felt like dog chow for most of 2007.

But it's a new year, with a new church meeting schedule, so I'm looking forward to being a little bit more active in our chapter's activities this year. Fundraising doesn't scare me nearly as much as it did, and I'm getting used to the fact that I have PKD. I know, it's been two years, which seems like it would be more than sufficient time to adjust, but cut me some slack here. In addition to being diagnosed with PKD in 2006, we sold our house, my husband got a new job, we moved to a new city, and I got pregnant. There's only so much a girl can take in at once.

At our chapter's walk this year, somebody was honored who had "lost his fight with PKD". Those words tumbled around in my head for quite a long time after that, making me wonder what it means to fight PKD, and reminding me that just because I feel great right now, that will not always be the case. But for now, I'm okay with not having to fight. For now, I'm just happy to be where I am. Stable. Like I said, I've learned never to take stability for granted.

More Adventures in Veg Cooking

2008-02-27T15:12:00.000-08:00

I made some calzones from the Moosewood Cookbook last night, and for the most part, they were a success. They did sort of ooze out a little, and as I took them out of the oven, I said, "Oh, SHOOT!"

My 5 year old said, without missing a beat, "Burn the beans again, mom?"

Then, when my husband came home, he took a whiff and said, "What's that smell? Was there an electrical fire in here?"

Nice.

Bad things

2008-02-16T17:34:00.000-08:00

Reading “The Stand”, a book about an epidemic super flu that kills everybody.

Reading “The Stand”, a book about an epidemic super flu that kills everybody– during flu season.

Getting diagnosed with the flu after reading “The Stand”, a book about an epidemic super flu that kills everybody.

Almost passing out in the doctor’s office, and vomiting in front of the nurse.

Having to use your jacket as a pillow and lie down on the cushy table so you won’t pass out.

Having to listen to piped in music that included “She’s like the wind” (by Patrick Swayze? Is that right?) and “Manic Monday” while you wait for the doctor.

Having to listen, “Every Rose Has It’s Thorn” while waiting for your prescription for cough medicine.

Basically, being sick blows. Especially when you are forced to listen to 80's music all day. I was bracing myself for Cyndi Lauper at any moment.

Good things:

My baby had a flu shot. She’s perfectly fine.

The cough medicine is a narcotic. Oh yes, that’s right. A NARCOTIC. Sometimes in the midst of badness, you just have to turn yourself over to better living through pharmocology.

I’m going to go blow my nose.

On a bulgur quest

2008-02-05T11:12:00.001-08:00

Time to report:

BP--down about 10 points.
Weight--Down about 7 lbs
Legs--can now run 3.6 miles with my girls at a reasonable pace without complaining. Mostly.

Conclusion:
This healthy diet and exercise stuff might just be true. Dang it.

I am attempting to make Schehezerde casserole (I think that's how you spell it) tonight, and it calls for 'bulgur', which apparently is a mainstay of vegetarian diets, and hoo-boy, do I feel silly for not having the foggiest idea how to get me some of that. I'm going to be an optimist and hope that it's in the organic section of my local supermarket, but as last month I made the manager hunt all around for some garam masala (yes, I did. I know, so embarrassing), I'm not too keen on making him scrounge me up some bulgur. I'll have to brave it on my own. After all, I don't want some stranger to think I'm the wacky whole food organic lady who only eats things most people can't pronounce. I have my reputation to consider.

(Again, I have no idea what that means, but just go with me here.)

Can anybody give me any clues to help further me on my bulgur quest?

Wacky Steroid lady

2008-01-23T18:16:00.001-08:00

That's what they are going to call me after my transplant. Or at least that's what I gather after seeing this clip involving super Hollywood designer, Steven Cojocaru, a PKD patient who has gone through two kidney transplants.

He said the steroids made him crazy. Completely.

I am learning, bit by bit, what it means to have an kidney transplant, although I'm constantly discovering just how much more I need to learn. I vaguely knew one took steroids, but I was more focused on the "Hey, didn't you know that the immunosuppressents you have to take afterwards make you susceptible to skin cancer" aspect of the whole side effects issue to be overly concerned with the steroid part. I knew they make you fat, but I thought that was temporary. I've been temporarily fat before--pregnancy and all, so I figured I could handle it.

Going nutso--not so much.

I could probably freak out at my husband, who would probably hate it, but take it anyway. But what this man describes is absolutely unnacceptable behavior around children, kids who will be unsettled and upset anyways, seeing their mother ill and hospitalized. Hopefully my children will be fairly self sufficient by the time I need a transplant (and my husband constantly reminds me that there is an "if" in there that I routinely ignore--yes, I married an optimist.), but that doesn't mean it won't be traumatizing to see their mother, as Cojocaru described it, "seething" with rage.

This worries me. Truly. To have my mental state so radically altered is something I have never heard about, and it makes me sick to my stomach to think that my children will have to witness something like that.

Anybody have some rays of hope to offer?

On the plus side of all of this, it's nice to see a celebrity talking about PKD in such a candid way, and with Mary Hart, of all people. It's nice to see somebody who has people like Renee Zellweger sending him balloons on our side of the fight. Maybe he'll design some cool PKD, um, evening gown or something.

Ok, that was a weird statement. Sorry.

I was a lion today

2008-01-21T16:58:00.000-08:00

And I ate a zebra. Boy was it delicious.

Ok, in case you have no idea what I'm talking about, I am referring to the advice that Dr. Steinman gave me regarding vegetarianism. He said if you are going to eat meat, do it like a lion, a predator who will gorge and overfeed on a zebra, and then not eat for days, weeks, possibly. Tonight I cooked up some burgers for my boys, but not just any burgers. This is the beef I get from a farm in the Shenandoah Valley, from a farmer who grass feeds his cows in the way nature intended. And if you think there is no difference between a grass fed, "salad bar" beef hamburger and beef from a cow that eats primarily corn (which is what most cows eat in our country while they are crammed into feed lots, but I won't go into that because that's a rant for another day) then you haven't tasted this stuff. It's excellent. While my husband tried to surpress his sighs of gustatory pleasure, I looked at my pathetic little Boca burger with slumped shoulders.

Then my son neglected to finish his burger. And I pounced.

I am lion, here me roar.

Tomorrow we'll go back to eating chickpeas.

Nursing

2008-01-17T08:54:00.000-08:00

I like nusing my baby. I'm pretty good at it, really. Ok, so my milk supply isn't overwhelming, which means she has to eat a little more often than the average baby, but we do pretty well.

I don't really want to give it up.

At my last nephrology appointment, my doctor said that we needed to shift my medication for my blood pressure, because it was higher than she liked. We wouldn't do it, though, until my baby is 10 months old, because nursing is so good for babies, and the medication she wants me on is not.

Well, Little Sister had a check up today, and the doc asked me how long I planned on nursing. I told him I would have to stop in about 3 months, because of my blood pressure, blah blah blah.

He shrugged and said, "All it would do would slow her heart rate a little bit, nothing serious. I should think she would be okay. I'll check for you, though."

I don't know if he really will check, because he's sort of a laid back kinda guy, and didn't seem all that concerned.

But then I started thinking--is 2 months will slightly elevated BP really that dangerous? I'm running in the mid 130s/mid 80s on meds-- butI was running that high before without meds. If I push it two more months, will that really change the outcome of my kidney function all that much?

Another reason I want to keep nursing is that formula is expensive. Really expensive. We went through this with my son, and it's a chunk of change.

It's also inconvenient. Who wants to pack a bottle around? Not me. I did it with my son, because my milk supply went dry at about 8 months. What a pain. For me, nursing is much more convenient.

I'm not a nursing Nazi. I know many women who have given their babies formula, and their babies do just fine. And I'm not going to pull out the argument that my baby will be obese and stupid if I don't nurse her until she's 1 year old. I have no doubt that she will suffer few if any effects of being bottle fed for three months.

But this is the last time I get to nurse a baby. I'd like to get the most out of the experience. Plus, she makes really cute sighing noises after she's done, and snuggles into me. Seriously, you can't beat it.

My legs hate me

2008-01-12T19:01:00.000-08:00

I went running today. The first time in months. 3 and a half miles. With a former marathon runner.

Ouch is the word of the day.

And here's where you say, "Hey, you kept up with a marathon runner! Way to go!"

Sorry, that doesn't help matters much. She's slower these days, for good reason. She's pregnant.

Oh, I have a long way to go.

How to make your 5 year old eat Chick Pea Masala right after he told you it looks like dog poop

2008-01-08T10:02:00.000-08:00

Tell me him will make him toot.

Promise him a tooting contest with his father.

Appeal to his innate competitive nature and tell him the more he eats, the more he’ll toot, the easier he’ll beat his dad.

Get out of the way as the cloud of flatulence erupts over your dinner table with your two ‘boys’ laughing like maniacs.

Wonder if you should be a proud momma when your son yells, “Hey, FART and TOOT are SYNONYMS!”

For those of you who wondered, J won. 9 to 4. Yes, score was kept. But at least my boy’s plate was nearly clean.

I think I”ll go rent a chick flick now.

What does one of Utah's leading cardiologists say about vegetarianism?

2007-12-28T10:15:00.001-08:00

He's a fan, actually.

Not that he's treated me, or anything, but he happens to be a member of my family, and I got to chat with him at Christmas.

Unfortunately, he agrees with Dr. Steinman that cutting back on meat is a good idea. He did, however, confirm my own suspicions that cutting back too much on protein in my mid 30's is a recipe for early onset of osteoporosis, so he said focus on plant protein and eggs, with meat maybe once a week.

Dang it.

The whole vegetarian thing proved to rather tricky this week, what with ham on Christmas Eve, roast beef for Christmas dinner, and a family trip to Hires, a restaurant in Utah known for its giant burgers.

Veggie burgers made of barley just don't match up to the Big H.

All of this advice, of course, is coming from doctors who are not actually my own personal physicians. As good as they are, I am not actually under their care. My SIL pointed out this week that I need to really sit down with somebody who knows exactly what my numbers are, figure out where I'm really at, and make a cohesive diet plan from there. I agree with her, and I am looking forward to doing just that in January after my annual renal ultrasound and full panel of bloodwork.

I probably still won't be able to eat a Big H, though. Oh Hires, I never really knew thee. (sigh)

What's your drink?

2007-12-13T18:15:00.000-08:00

Take 2 at the grocery store...

Ok, this time I was only shopping to get stuff to make homemade chicken noodle soup for a friend. Not for me, I promise. I did taste it, just to make sure it had that chicken noodle goodness, but I didn't pour a bowl. Be proud.

Anyway, in addition to the bullion cubes, basil, and oregano, I found myself filling my cart with random beverages. Chocolate soy milk, vanilla soy milk, oooooo, that pomegranate juice looks interesting. Wow, banana colada with 8 essential vitamins and minerals? Yeah, gotta have that too!

It wasn't until I found myself putting tangerine sparkling water next to the sparkling pink grapfruit juice that it dawned on me.

I was splurging. Obsessing over beverages. Because I can.

I can't have soda--too much caffeine and/or sodium. I can't have a lot of chocolate, because for whatever bizarre reason that makes my cysts hurt. I can't have any canned foods (again the sodium issue), and now all carnivorous goodness has disappeared from my plate.

But damnit, I can have pomegranate juice. And whatever else the beverage industry wants to tempt me with. So bring on the tangerine orange banana pina colada grapefruit carrot juice cocktail. I'm buyin', baby.

Where's the beef?

2007-12-10T13:25:00.000-08:00

Not on my plate. Not anymore. (sigh)

Last week I had the distinct privilege of meeting with Dr. Steinman, PKD doctor, guru, and all around nice guy. In addition to persuading me to join his clinical trial up in Boston, he also told me I need to make some changes in my diet. In addition to low sodium, (and when he says low, he means low--1500mg) he suggested that I also go vegetarian. Not vegan, necessarily, but lay off the beef, pork, and chicken.

When he said that, my brain practically exploded.

But, like the good PKD patient that I am, I am trying. Dr. Steinman made the point that it's not that one steak will kill you, but the negative cumulative effects a regular animal protein diet can have on kidneys that are already compromised. So, with that in mind, I went grocery shopping today.

The experience almost made me cry.

It's not only giving up the meat, really, although I'll admit that most of the meals I cook for my family revolved around meat of some kind. It's the balancing act I am faced with that was overwhelming for me. How do I balance a vegetarian diet with low sodium? How do I balance my recent commitment to eat locally ground food that is in season with such diet restrictions? How am I going to feed my family when the only real vegetarian dish I know how to make is Eggplant Parmesan, a dish my 5 year old adamently refuses to eat? And what do I do with the 10 lbs of frozen ground beef I bought in bulk last month from my favorite farmer?

The enormity of what I faced, the changes I would have to make, hit me in the produce aisle, and I wanted to sit down amoung the potatoes and weep.

Like everything else, I know that I have to do this in small steps. I picked up some trout to make for dinner, with a bag of salad and locally grown acorn squash for side dishes. I got some organic tortillas and some canned refried beans, thinking we could do bean tortillas tomorrow. The sodium from the canned beans isn't ideal, but it will have to do until I figure out how to actually make food with real beans.

I did have some positive thoughts in the grocery store. One: beans are cheap. Two: Eating like this, the baby weight is bound to come sliding off in a jiffy.

I guess there's a sliver lining in everything.

All things dark and creepy, all creatures who eat my carrot cake with cream cheese frosting

2007-12-02T16:43:00.000-08:00

I did all the natural treatments-the vinegar, the eucalyptus oil, the peppermint oil, the pepper, the lemon juice. I finally paid the nice man lots of money, watched him put down sticky bait that turned my counters into a feeding frenzy. I’ve planted mint leaves around my house to keep them gone, and even laid traps down next to our termit tubes in the ground.

And yet, at approximately 7:30am yesterday, had you been in the neighborhood, you would have found me wildly brandishing a can of Raid screaming, “Die, ants, DIE!” and hopping up and down while spraying what I’m sure are toxic levels of Raid into the outlet next to my stove.

They were eating my carrot cake. What’s a girl to do?

I’m no bug-a-phobe. I trap spiders and take them outside, I don’t mind if a beetle wanders across my path now and then, and silverfish, although rather gross, move so fast that I hardly have time to register they were there until they are gone.

But ants. I hate them. With a passion.

It just might be left over from my childhood, when ants used to get into our cereal. There is nothing that will make a child cry faster than pouring milk into a cereal bowl and watching ant corpses bob to the surface. And yes, it’s just that gross.

While living in Arkansas, I got into the habit of putting all my food, yes, including cereals, in big plastic jugs, to keep the cockroaches away. I have adopted a similar pattern here, and have managed to keep my sugar and other obvious ant delicacies ant free. We have also gotten into the habit of keeping our counter spotless from any food items, or at least making sure that before we go to bed, there is nothing to tempt the little beasties.

I got overconfident, I admit it. After all my time, effort, and yes, money to the bug man, I thought we’d won the battle, so I covered my carrot cake with cream cheese frosting with Saran Wrap, and left it on the counter overnight.

And they pounced. Cheeky little bastards.

The big guns, aka Mr. Exterminator, will be coming in a week or two for the quarterly spraying. I can’t wait. Then, there will be nothin’ left but the cryin’. And you can be sure that I will be standing by, watching with glee, screaming again a mantra I have adopted for my life,

“Die, ants, DIE!” *

Yes, the bug man might think I’m nuts, but I don’t care. When it comes to killing ants, I have no shame.

To any of you who read this over at my mommy blog, I apologize for double posting. Time is tight these days, people. Cut me some slack.

There is too much urine in my life

2007-11-18T15:53:00.000-08:00

My dog, Maggie. Behold.

She pees a lot. Well, all dogs do, I suppose, but my dog is special. She pees without even noticing it.

All over my carpet.

Special indeed.

The last time she did this, she had a bladder infection. I called the vet again, and she said it was probably incontinence secondary to hormonal changes that occurred when she was spayed.

Or her kidneys were failing.

So, in order to decide what to do with our lovely animal, I had to "collect a specimen". Yes, I stuck a bowl under my dog's bum to collect her urine, and then I stored it in the fridge until I could get it to the vet.

My husband had to audacity to say, "How do you know you have to store urine in the fridge?"

Trust me. I know.

Luckily, my dog will not need a kidney transplant. She simply needs some meds for life to counteract the hormonal reactions that are causing her incontinence. And, I'm happy to report that since we have started on this new pharmalogical regimen, I haven't had to clean up any urine at all.

What a relief.

I think this family can only handle one member in need of a kidney transplant, thank you very much.