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.