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. November 14th, Richmond, VA, I'll be there. 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.
Monday, July 06, 2009
Monday, June 15, 2009
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.
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.
Tuesday, May 19, 2009
When Cyndi Lauper sings about kidneys, attention must be paid
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.
Wednesday, May 13, 2009
A lot of pee in one week
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.
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.
Sunday, May 03, 2009
I'm a dope
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.
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.
Saturday, May 02, 2009
An outie
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 friend's 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.
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 friend's 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.
Wednesday, April 01, 2009
I guess they can't hear the people in my head
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.
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.
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