Night at the ER

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

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

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

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

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

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

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.