I just wanted to quickly post and say that I'm alive and well, just a little busy and getting caught up. We received a visit from Fox 26 Houston reporter Greg Groogan, who spent some time with Schuyler and Julie and myself, both here at the apartment and at Schuyler's school. I'm told that his story will probably run in early May and may be picked up by affiliates in different parts of the country. In your town, too? Well, perhaps!
It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.
There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.
In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.
How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.
Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
April 10, 2008
March 5, 2008
Sick day
As I write this, Schuyler has been asleep for about thirteen hours straight. She was sent home from school yesterday with a temp of 100.3, and while she spent the day at home with Julie in good spirits and seemed to be her usual happy self when I got home from work, she crawled into our bed at about 6 last night and is still there now.
It's interesting tome how much energy seems to get sapped out of the world when Schuyler is sick. It makes me realize exactly how much of my own attitude and enthusiasm is drawn from her. Anyone who has met Schuyler knows what I'm talking about. Her energy is contagious. Here's hoping that whatever has her laid out for thirteen hours (and counting) isn't.
I take off for my book tour in two days. Houston on Saturday, over to Austin on Sunday, and then San Antonio on Tuesday. If you're in town for any of these, come out and say hello. I'm looking forward to this as much as anyone looks forward to driving over 800 miles in five days. There are a lot of people I'm looking forward to seeing on this trip, and I'm really excited about meeting new folks as well. My social circle in Plano is pretty limited. (And short, and mute.)
It's interesting tome how much energy seems to get sapped out of the world when Schuyler is sick. It makes me realize exactly how much of my own attitude and enthusiasm is drawn from her. Anyone who has met Schuyler knows what I'm talking about. Her energy is contagious. Here's hoping that whatever has her laid out for thirteen hours (and counting) isn't.
I take off for my book tour in two days. Houston on Saturday, over to Austin on Sunday, and then San Antonio on Tuesday. If you're in town for any of these, come out and say hello. I'm looking forward to this as much as anyone looks forward to driving over 800 miles in five days. There are a lot of people I'm looking forward to seeing on this trip, and I'm really excited about meeting new folks as well. My social circle in Plano is pretty limited. (And short, and mute.)
February 1, 2008
Philanthropy and boobs
I don't know about your friends, but I know some pretty remarkable and generous people, and of them all, I can't think of one that I admire more than my friend Dana. She has been a good friend to my family and me since before Schuyler was born, and I can't think of anyone who we've been able to consistently count on more than her. I know that I'm not the only person who feels that way, too. We miss her madly.
Back in the summer of 2000, Dana embarked on a crazy bicycle ride from Boston to New York, benefitting AIDS research. To me, the person who has to have an internal dialogue every day I go to work concerning whether or not I should take the elevator to the second floor, this was an astounding achievement.
Now she's doing it again. This time it's a three-day walk benefitting the Susan G. Komen for the Cure and National Philanthropic Trust, funding research, education, screening and treatment of breast cancer.
Go to Dana's Philadelphia Breast Cancer 3-Day page and help out, won't you? It's for a great cause, and besides, as Dana points out, "EVERYONE LIKES BREASTS". Which I think is probably a universal truth.
November 19, 2007
Dancing away the monster
Excerpt: "Ballerina dreams: A True Story"
Make sure you watch the video, which is the story that ran on The Today Show this morning and turned me into a big weepy girl before I'd even had breakfast.
(Yes, I watch The Today Show, Dr. Judgey McTelevisionsnob.)
November 17, 2007
Because "separate but equal" worked out so well the first time...
The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.
Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.
They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".
That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.
When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.
As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.
Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.
I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.
Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.
This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.
If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.
Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.
Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".
I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.
November 15, 2007
Sometimes it's not monsters that we fight
From the CCN website (which I usually visit for the guilty pleasure of reading about people being eaten by alligators and sharks and bears):
"Help! My pediatrician's not listening to me"
Of particular interest to me (and relevant to Schuyler's story) was this part, near the end:
"Parents of children with severe disabilities are often the experts on their children. They're with them all the time."
The trick here, she says, is to stand firm, even when you know you're annoying the doctor.
"You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.
Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.
For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."
Tell me about it.
November 14, 2007
I have choices!
So what is the thing that I should spend time fretting about today? The determination by the dealership that Julie's car is officially dead (turning us into a one-car family, with me working an hour away from Plano), or the fun fact that I do believe I am getting another kidney stone?
Decisions, decisions!
Decisions, decisions!
August 30, 2007
Hard to even think about
I'm not going to set this up with a lot of commentary. I will simply say that you should go read this post, maybe the most affecting and poignant blog post I've ever read. It was written by Danielle, a med student whose stuff I've been reading for a while.
I read this last night, and then I sat up thinking about it for a long, long time. I think when you're the parent of a broken child, it's very easy to believe that you'll always be around for them, as if your special work grants you some sort of invulnerability to the shitty, horrible things that can happen in the world. I honestly can't tell you what would happen to Schuyler if something happened to Julie and or, who would take care of her and assume the life's work of fighting her monster with her.
It's a hard conversation for us, because there aren't any easy answers, no family in towns with schools even remotely prepared for someone like Schuyler. The thought of Schuyler suddenly left on her own in this world opens a dark pit in the very center of my body. I think it's something we need to figure out, though, and soon. It's easy to forget just how fast things can happen, or how cruel the world can be.
I read this last night, and then I sat up thinking about it for a long, long time. I think when you're the parent of a broken child, it's very easy to believe that you'll always be around for them, as if your special work grants you some sort of invulnerability to the shitty, horrible things that can happen in the world. I honestly can't tell you what would happen to Schuyler if something happened to Julie and or, who would take care of her and assume the life's work of fighting her monster with her.
It's a hard conversation for us, because there aren't any easy answers, no family in towns with schools even remotely prepared for someone like Schuyler. The thought of Schuyler suddenly left on her own in this world opens a dark pit in the very center of my body. I think it's something we need to figure out, though, and soon. It's easy to forget just how fast things can happen, or how cruel the world can be.
May 25, 2007
Acronym Planet
Schuyler had her last IEP meeting this week, which was also her final week of school. (We're celebrating later today with some Father/Daughter Age Inappropriate Pirates & Monsters Movie Time. Don't judge me, jealous haters.)
The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.
Here's what the government says about the IEP:
What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.
We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.
The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.
(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)
What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.
Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.
They get her. I suspect they get them all.
At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.
At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.
The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.
With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.
The IEP, or Individualized Education Program, is part of the implementation of the Individuals with Disabilities Education Act (IDEA), which we Shepherds of the Broken use, along with the Americans with Disabilities Act (ADA), to bully the rest of the world into helping our kids get an appropriate education and generally not get swept under the rug. The IEP is the plan by which parents, teachers and therapists decide on the course of a student's school studies.
Here's what the government says about the IEP:
Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.
To create an effective IEP, parents, teachers, other school staff -- and often the student -- must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing -- and implementing -- an effective IEP requires teamwork.
What that little block of government-issue cheese doesn't tell you is that for many parents of a broken kid, or perhaps even most parents, the IEP meeting itself is usually a gigantic, frustrating pain in the ass.
We've been lucky since coming to Plano. Our IEP meetings are generally a breeze now, although we certainly paid our dues back in Manor (the district near Austin where she attended school before) and in New Haven. I still remember the meeting where Schuyler's speech therapist in Manor finally admitted that the reason she wasn't recommending sign language was that she didn't know it herself and didn't think she had time to take a class. That was swell.
The Plano public schools' special education programs are among the best in the country, and so for the first time we've been able to relax a little and allow her teachers to take the lead. You have no idea what a relief that is, unless you have a broken child yourself, in which case you know EXACTLY what I'm talking about. IDEA provides for something known in special needs circles as "FAPE", or Free Appropriate Public Education. It's the part of the law that sets the minimum standard for special education in public schools. In some cases it's a life saver; in others, a mockery.
(If you want to put your broken kid in a neurotypical private school, you're on your own. Private schools do not have to accept students with special needs, and many choose not to. The ones that do typically make the parents of the child responsible for the cost of additional resources. On the other hand, your broken child is free to talk about Jesus, so there you go.)
What FAPE doesn't guarantee is the best possible special education. It provides for an "appropriate education", which many courts have defined as "access to an education" or a "basic floor of educational opportunity". Parents who go to court seeking additional services for their kid are told never to use the terms "best" or "maximizing potential" during legal proceedings. Parents have to educate themselves on what their kids need, and they need to find the programs that serve their kids the best. The idea of moving to a whole new city in order to put Schuyler in a particular school district struck some parents as an extreme move on our part, but to other parents of a broken child, it made perfect sense.
Plano was worth it, and continues to be worth it, but the thing is, it's not just because the teachers and specialists are good. Schuyler's team is exactly right for her for one simple reason. With a very few exceptions, they almost never tell us what she CAN'T do. They assume we already know that, and they're right. They set goals for Schuyler, they let us know when she's succeeding and when she's falling short, but they never set boundaries and they never accept limitations for her.
They get her. I suspect they get them all.
At her last meeting, her team pushed hard for a cognitive evaluation, a school-mandated three-year assessment of her abilities that we originally resisted when she was in Manor. I didn't trust her old school team in Manor, not with a test like that. Such a test is very difficult to administer to a non-verbal subject, and very subjective, so it requires an expert test administrator who can make appropriate accommodations for a nonverbal subject. This is the first time we've trusted the school to administer such a test correctly. Even so, I had and continue to have my reservations.
At the end, there's a number, and our fear was that it would be a number that would follow her along forever. Schuyler didn't do poorly on the test, but she had problems. I was happy to see that her team did recognize (in the actual written report itself) that her score probably represented the low end of her actual capabilities. It was nice to have confirmation that I'm not just being Defensive Denial Dad when I mention her aversion to evaluations. They see it, too. Schuyler can be defiant in evaluations, perhaps partly in sport but mostly because she becomes extremely impatient. She likes to give the answer after merely glancing at the possibilities, and the problem only gets worse as the test drags on. It's a problem that they identified at this last meeting, and one that we're going to have to work on.
The possibility was brought up that she might be ADD. Attention Deficit Disorder often accompanies cerebral palsy, which is related in many ways to Schuyler's polymicrogyria. Because of her malformed brain and the fact that no one knows exactly how it functions at the high level that it does, medications that affect brain chemistry are probably out of the question. But ADD was mentioned only as a possibility, and not one that they even feel compelled to test her for yet, so it's probably a little early to freak out. Even so, Julie and I were both surprisingly unmoved when they mentioned it.
With everything that our daughter has been through (and will likely go through in the future) with polymicrogyria, Attention Deficit Disorder isn't very scary. Compared to Schuyler's monster, it's a hamster.
February 16, 2007
Bug
Well, my weekend plans have changed slightly.
She seemed absolutely fine when she got on the bus, but about an hour later, we got the call. Schuyler is suffering from either the flu or demonic possession.
It sucks when any kid is sick, but with Schuyler, it's extra heartbreaking because she can't really tell us very much about how she feels. The Big Box of Words helps to some extent, but it requires a certain amount of concentration and clarity that might just be somewhat lacking at the moment when your stomach is threatening to go all Vesuvius on you. Sometimes there's not much of a high-tech alternative to yelling "Gotta puke!"
We were practicing just now.
"So if you feel like you're going to throw up, here's a trash can," I told her as she lay on the couch. "Be sure to move Jasper out of the way first." (I swear, he looked worried.)
She nodded her head.
"Okay, so you need to let me know if you feel like you're going to be sick. What are you going to say if you feel like you're going to throw up?"
She opened her mouth and howled at me. "Aaahh!"
That'll do.
She seemed absolutely fine when she got on the bus, but about an hour later, we got the call. Schuyler is suffering from either the flu or demonic possession.
It sucks when any kid is sick, but with Schuyler, it's extra heartbreaking because she can't really tell us very much about how she feels. The Big Box of Words helps to some extent, but it requires a certain amount of concentration and clarity that might just be somewhat lacking at the moment when your stomach is threatening to go all Vesuvius on you. Sometimes there's not much of a high-tech alternative to yelling "Gotta puke!"
We were practicing just now.
"So if you feel like you're going to throw up, here's a trash can," I told her as she lay on the couch. "Be sure to move Jasper out of the way first." (I swear, he looked worried.)
She nodded her head.
"Okay, so you need to let me know if you feel like you're going to be sick. What are you going to say if you feel like you're going to throw up?"
She opened her mouth and howled at me. "Aaahh!"
That'll do.
November 20, 2006
Better
Schuyler and I bought these Chuck Taylors over the weekend. Think of it. Shoes with something to say, worn by a little girl who can't say a word. That's some fated footwear right there.
There's one good thing about depression, a great thing, actually, even if it's a little manic. When it finally lifts, you feel fucking awesome, like nothing can beat you. You may not suddenly have all the answers, but you feel like you do, and that's not nothing.
I'm sure there's a chemical element to the passive of a depressive episode. I'm not sure I care so much. It's the other reasons for improvement that interest me more. There's clarity of thought and good advice of smart friends who listen and care, and improved health, too.
And exercise. I've started hitting the treadmill at my apartment complex's workout room for an hour a day, walking at 3.5 mph. Not exactly tearing it up, but compared to the ass-to-couch regimen I've been following, it's a start.
Mostly, however, it involves reaching the point where you're just not going to be down anymore. That's how it works for me. I never know exactly why I go into a down period, other than identifying the things that trigger it on the surface, and likewise I have no idea exactly what makes my mind arrive at "Oh, fuck this", either.
But I feel better, and stronger, and ready for the next few weeks. I need to finish the book, have a productive and successful New York City trip, and turn thirty-nine without stepping in front of a bus.
I can handle that.
There's one good thing about depression, a great thing, actually, even if it's a little manic. When it finally lifts, you feel fucking awesome, like nothing can beat you. You may not suddenly have all the answers, but you feel like you do, and that's not nothing.
I'm sure there's a chemical element to the passive of a depressive episode. I'm not sure I care so much. It's the other reasons for improvement that interest me more. There's clarity of thought and good advice of smart friends who listen and care, and improved health, too.
And exercise. I've started hitting the treadmill at my apartment complex's workout room for an hour a day, walking at 3.5 mph. Not exactly tearing it up, but compared to the ass-to-couch regimen I've been following, it's a start.
Mostly, however, it involves reaching the point where you're just not going to be down anymore. That's how it works for me. I never know exactly why I go into a down period, other than identifying the things that trigger it on the surface, and likewise I have no idea exactly what makes my mind arrive at "Oh, fuck this", either.
But I feel better, and stronger, and ready for the next few weeks. I need to finish the book, have a productive and successful New York City trip, and turn thirty-nine without stepping in front of a bus.
I can handle that.
October 31, 2006
On second thought...
First of all, I want to thank everyone who has been concerned about my health. I really appreciate it.
I've been thinking about this all morning, however, and I've come to the conclusion that while blogging is by definition a self-indulgent endeavor, writing about my stupid health issues is beginning to feel like it crosses the line. I'm boring everyone with it, particularly my friends and most of all myself.
For those of you have expressed your concern, I am very grateful. Go get some candy. Talk to you soon.
October 28, 2006
Audience participation
Come on, everyone, chant it with me.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that pebble!
Pee! Pee! Pee that boulder!
I have to say, I'm just about all funned out with the kidney thing.
October 26, 2006
Rock star
So last night I got this massive pain in my left kidney, like I had been kicked hard, and just this once, I was smart enough not to ignore it. I had Julie take me to the hospital, and sure enough, it was a kidney stone.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
In addition, however, I apparently have gall stones and a stone in my appendix, something I'd never heard of before. I am full of rocks!
A few hours before, I'd hooked up with my friend Jill to give her a copy of Part One of Schuyler's Monster, which she is going to read for me. We met for Japanese bubble tea, or "boba", which, if you've never had it, can be a little weird. There's no appetizing way to put this, but it is basically tea with balls of tapioca in it. Sarah Vowell refers to it as "tea and dumplings", and while it sounds revolting, it's actually quite tasty. Meeting for boba has become something of a ritual for Jill and me.
When the doctor got a look at my CT scan, he saw, in addition to my belly full of pebbles, the undigested pudding balls in my stomach. He came into the room with a puzzled look on his face.
"Um, did you eat a necklace?"
Before the night was up, all the nurses and doctors in the ER were talking about my CT scan. I was the Freak of the Night. I rather enjoyed the attention.
So I'm home now. They elected not to do any surgery just yet, and sent me home with a script for Vicodin, which I have been taking all day like a good little stoner. As of about 11:00 tonight, my kidney has still not relinquished its prize. I have to say that even with the drugs (and don't let me sell Vicodin short as a drug that will fuck you up and good), this sucks.
The doctor at the ER said that for a man, this is about as close to labor pains as I'm ever going to feel. This made Julie snicker.
"Yeah, at least you got a prize at the end," I said.
As for that prize, Schuyler had to go with us, and we were concerned that she would be traumatized by the hospital. Keep in mind that the last time she was there, she was getting blood drawn for genetic testing, and before that she was being operated on for a bad staph infection, and before THAT was the MRI that was such an awful experience. Schuyler had gotten to the point where she would panic any time we went to a doctor's office of any kind, and I can't say I could really blame her.
Well, I'm happy to report that not only did she not freak out at all, but she seemed to have the time of her life. My nurse was a good-looking guy who flirted with her and gave her stickers and cookies, and she liked looking at photos of boba balls in my belly, along with the rest of the hospital staff.
Well, I'm glad someone had fun.
July 21, 2006
FOMB
That's what I told a friend of mine yesterday that I must have been suffering from. Fat Old Man Belly.
Feeling much better today. Must have been that 24-hour appendicitis.
Thanks to everyone who send me their learned opinions and their fucked up little activities. You people are freaks.
July 20, 2006
So...
What does appendicitis feel like, anyway?
Yeah, this isn't how I wanted to start the day. Well, it also feels like gas, so we'll see. Perhaps I just need to, you know, play a little pants tuba.
I'll let you know. Without a lot of detail, because I love love love you all.
Ow.
Yeah, this isn't how I wanted to start the day. Well, it also feels like gas, so we'll see. Perhaps I just need to, you know, play a little pants tuba.
I'll let you know. Without a lot of detail, because I love love love you all.
Ow.
July 6, 2006
Well, yeah
(Cross posted from Diabetes Notes becaause it's more amusing than anything I am likely to write here today).
In a development sure to be covered in more detail in the next issue of The Journal of Duh, a study of overweight type 2 diabetics has found that increasing the amount of walking they do every day will result in significant improvements in heart and respiratory fitness. The study examined the exercise routine of eight subjects who were already walking more than the recommended 10,000 steps a day.
“The program used simple tools (pedometer and stopwatch) and a simple message to pick up the pace,” said Steven T. Johnson of the University of Alberta in Edmonton, Alberta, Canada, along with colleagues in the journal Diabetes Care.
The “Pick Up the Pace” program measured the number of steps that test subjects were typically taking and increased them by ten percent. This increase led to improvements in heart rate response to exercise, as well as a decrease in blood sugar levels.
In an earlier study, Johnson and his colleagues found that type 2 diabetics typically walk at a speed that is slower than that necessary to derive health benefits, even when the number of steps taken daily were increased.
There’s no word on whether or not they uncovered any mysterious connection between slow walking and painful feet, but I can only hope that in the near future, these researchers can unlock the secrets of how not smoking or eating donuts can also increase the health of diabetics. Well played, Mister Science!
In a development sure to be covered in more detail in the next issue of The Journal of Duh, a study of overweight type 2 diabetics has found that increasing the amount of walking they do every day will result in significant improvements in heart and respiratory fitness. The study examined the exercise routine of eight subjects who were already walking more than the recommended 10,000 steps a day.
“The program used simple tools (pedometer and stopwatch) and a simple message to pick up the pace,” said Steven T. Johnson of the University of Alberta in Edmonton, Alberta, Canada, along with colleagues in the journal Diabetes Care.
The “Pick Up the Pace” program measured the number of steps that test subjects were typically taking and increased them by ten percent. This increase led to improvements in heart rate response to exercise, as well as a decrease in blood sugar levels.
In an earlier study, Johnson and his colleagues found that type 2 diabetics typically walk at a speed that is slower than that necessary to derive health benefits, even when the number of steps taken daily were increased.
There’s no word on whether or not they uncovered any mysterious connection between slow walking and painful feet, but I can only hope that in the near future, these researchers can unlock the secrets of how not smoking or eating donuts can also increase the health of diabetics. Well played, Mister Science!
June 13, 2006
Breakfast with Rob
Good morning, kids! Say, what's for breakfast? Here's what's on the menu today:
Metformin ER. (generic form of Glucophage XR) This is the primary drug addressing high blood sugar for type 2 diabetics. If you know a type 2 diabetic, they are probably taking some form of this, unless they reached their "fuck THIS" stage and gave it up. Each pill is huge; they come in a bottle roughly the size and shape of a Red Bull can.
Potential Side Effects: Good lord. One 500mg pill did nothing to or for me, two made me vaguely nauseous and fatigued. It was when I went up to three that the real fun began. Extreme nausea, diarrhea cha cha cha, and a fun thing where you burp a lot and the burps taste like you have been eating a skunk, ass first. I finally had enough and stopped taking them while I was working over the weekend, and guess what happened? I INSTANTLY felt 100% better.
Actos. This is another drug for high blood sugar. Starting today, I'm taking one of these a day instead of that third Metformin.
Potential Side Effects: A whole new set of possibilities! Shakiness, dizziness, sweating, confusion (beyond my usual level, I assume), nervousness or irritability, mood swings, headache, facial numbness, pale skin, sudden hunger, and my favorite, seizures! Wouldn't it be ironic if I got seizures before Schuyler? I went and read what other patients said about Actos, and a lot of them complain about weight gain. Which is funny, since two of the other drugs I'm taking are supposed to cause weight loss. A war is shaping up inside the Rob!
Lisinopril. Okay, so this is the thing I didn't want to talk about last time. This drug is normally used to address high blood pressure, but my BP is normal. In my case, it is being prescribed to arrest and hopefully reverse early signs of kidney failure. Yeah, that's the thing I didn't and don't so much want to talk about.
Potential Side Effects: Dizziness, headache, fatigue, dry cough, muscle cramps, numbness, nausea and diarrhea (well, of course), and a rash (delightful!).
Phentermine. This is my supermodel diet pill.
Potential Side Effects: Restlessness, nervousness, anxiety, headache, insomnia, cha cha cha, and extreme sexiness! Oh, and it is habit forming.
Cinnamon Bark. This is my new age natural supplement to address high blood sugar. No idea if it works.
Potential Side Effects: No idea. Cinnamon taste will make me a more attractive target for cannibals and vampires. Fucking vampires, man. As if life wasn't hard enough already.
Banana. A tasty treat.
Potential Side Effects: Improper disposal of the peel may result in comical injury.
Metformin ER. (generic form of Glucophage XR) This is the primary drug addressing high blood sugar for type 2 diabetics. If you know a type 2 diabetic, they are probably taking some form of this, unless they reached their "fuck THIS" stage and gave it up. Each pill is huge; they come in a bottle roughly the size and shape of a Red Bull can.
Potential Side Effects: Good lord. One 500mg pill did nothing to or for me, two made me vaguely nauseous and fatigued. It was when I went up to three that the real fun began. Extreme nausea, diarrhea cha cha cha, and a fun thing where you burp a lot and the burps taste like you have been eating a skunk, ass first. I finally had enough and stopped taking them while I was working over the weekend, and guess what happened? I INSTANTLY felt 100% better.
Actos. This is another drug for high blood sugar. Starting today, I'm taking one of these a day instead of that third Metformin.
Potential Side Effects: A whole new set of possibilities! Shakiness, dizziness, sweating, confusion (beyond my usual level, I assume), nervousness or irritability, mood swings, headache, facial numbness, pale skin, sudden hunger, and my favorite, seizures! Wouldn't it be ironic if I got seizures before Schuyler? I went and read what other patients said about Actos, and a lot of them complain about weight gain. Which is funny, since two of the other drugs I'm taking are supposed to cause weight loss. A war is shaping up inside the Rob!
Lisinopril. Okay, so this is the thing I didn't want to talk about last time. This drug is normally used to address high blood pressure, but my BP is normal. In my case, it is being prescribed to arrest and hopefully reverse early signs of kidney failure. Yeah, that's the thing I didn't and don't so much want to talk about.
Potential Side Effects: Dizziness, headache, fatigue, dry cough, muscle cramps, numbness, nausea and diarrhea (well, of course), and a rash (delightful!).
Phentermine. This is my supermodel diet pill.
Potential Side Effects: Restlessness, nervousness, anxiety, headache, insomnia, cha cha cha, and extreme sexiness! Oh, and it is habit forming.
Cinnamon Bark. This is my new age natural supplement to address high blood sugar. No idea if it works.
Potential Side Effects: No idea. Cinnamon taste will make me a more attractive target for cannibals and vampires. Fucking vampires, man. As if life wasn't hard enough already.
Banana. A tasty treat.
Potential Side Effects: Improper disposal of the peel may result in comical injury.
June 9, 2006
I thought drugs were supposed to be fun.
I wonder if I'll get fired from my diabetes blog for what must surely be the very worst blog post ever. It's a very real possibility.
I know I was pretty upbeat last time about my health, but the past two days haven't gone so well. One of the things that Dr. Hottie did was increase my daily dosage of Metformin (the poor man's Glucophage) by another 500mg, and that, possibly along with the Supermodel Diet Pills, has caused my body to reject the very idea of human life in a rather dramatic way. I won't go into a great amount of detail except to say that I'm glad our apartment has two toilets. You figure it out.
I got a call today from Dr. Hottie's office with results from my last round of tests, and it was basically one of those "I've got some bad news and I've got some good news" calls.
Oo, that reminds me of an old favorite joke!
A man has been having serious dental problems, so he goes to see an oral surgeon. The surgeon examines his mouth and then goes off to analyze the results. After a while, he comes back into the office and sits down with his patient. His face is somber.
"Well," he says, "I have some bad news, and then I've got some REALLY bad news. But then I have some good news."
"The bad news," he continues, "is that a rare but serious infection has attacked your teeth. I'm afraid we're going to have to pull every single one of them out."
"Oh my God, that's terrible!" the man cries. "I can't imagine what the REALLY bad news could be!"
"Oh, it's bad," the doctor says. "It turns out that the infection has also moved into your gums. We're going to have to actually go in and file your gums down, all the way to the bone."
By now the man is in tears. "That's horrible," he says. "What good news could you possibly have?"
The doctor looks up at him. "Did you see that good looking receptionist at the front desk when you came in?"
"Yeah?" says the man.
"Well, I'm banging her."
Ha! Anyway.
So the good news is that my blood sugar is actually coming down, slowly but steadily. It's still too high, but not crazy high. More wacky high now.
The bad news, well, just this once I'm going to keep it to myself for a while. I know it sucks to mention something on a blog and then be all "But I can't tell you, tee hee hee!", but we're still processing it and sorting out what it means and what we'll have to do about it. It was unexpected, I'll say that much.
I'm embarking on a crazy weekend where I'm shooting two weddings in two different towns, neither of them local or even all that close, and also working a bridal expo. That's a lot of pretending to be a nice person. This is the first time I've ever been concerned about actually making it through a gig, but I think I'll be okay. The truth is, I feel best when I'm shooting, with all the moving around and thinking on my feet. It's when I'm sitting on the couch watching Battlestar Galactica reruns all day like today that I feel bad.
You know, I'm standing by my assertion that the Diabetes Notes post I mentioned earlier is the worst blog post ever, but now that I look back on it, I think this one maybe runs a close second.
I know I was pretty upbeat last time about my health, but the past two days haven't gone so well. One of the things that Dr. Hottie did was increase my daily dosage of Metformin (the poor man's Glucophage) by another 500mg, and that, possibly along with the Supermodel Diet Pills, has caused my body to reject the very idea of human life in a rather dramatic way. I won't go into a great amount of detail except to say that I'm glad our apartment has two toilets. You figure it out.
I got a call today from Dr. Hottie's office with results from my last round of tests, and it was basically one of those "I've got some bad news and I've got some good news" calls.
Oo, that reminds me of an old favorite joke!
A man has been having serious dental problems, so he goes to see an oral surgeon. The surgeon examines his mouth and then goes off to analyze the results. After a while, he comes back into the office and sits down with his patient. His face is somber.
"Well," he says, "I have some bad news, and then I've got some REALLY bad news. But then I have some good news."
"The bad news," he continues, "is that a rare but serious infection has attacked your teeth. I'm afraid we're going to have to pull every single one of them out."
"Oh my God, that's terrible!" the man cries. "I can't imagine what the REALLY bad news could be!"
"Oh, it's bad," the doctor says. "It turns out that the infection has also moved into your gums. We're going to have to actually go in and file your gums down, all the way to the bone."
By now the man is in tears. "That's horrible," he says. "What good news could you possibly have?"
The doctor looks up at him. "Did you see that good looking receptionist at the front desk when you came in?"
"Yeah?" says the man.
"Well, I'm banging her."
Ha! Anyway.
So the good news is that my blood sugar is actually coming down, slowly but steadily. It's still too high, but not crazy high. More wacky high now.
The bad news, well, just this once I'm going to keep it to myself for a while. I know it sucks to mention something on a blog and then be all "But I can't tell you, tee hee hee!", but we're still processing it and sorting out what it means and what we'll have to do about it. It was unexpected, I'll say that much.
I'm embarking on a crazy weekend where I'm shooting two weddings in two different towns, neither of them local or even all that close, and also working a bridal expo. That's a lot of pretending to be a nice person. This is the first time I've ever been concerned about actually making it through a gig, but I think I'll be okay. The truth is, I feel best when I'm shooting, with all the moving around and thinking on my feet. It's when I'm sitting on the couch watching Battlestar Galactica reruns all day like today that I feel bad.
You know, I'm standing by my assertion that the Diabetes Notes post I mentioned earlier is the worst blog post ever, but now that I look back on it, I think this one maybe runs a close second.
June 6, 2006
Beedies update
I had my monthly visit to Dr. Hottie today, and it went fairly well. I was all prepared to find out that I am even fatter and lazier than I was last month, but I was surprised to learn that I've actually lost three pounds in the past few weeks. I'm still on the wrong side of where I was the day I was diagnosed and was told that I should lose twenty pounds, but considering that I thought the news would be worse, I was happy to hear that I am at the very least not turning into a chud monster at quite the rate I thought I was.
It's hard, losing weight when you've led a free and easy, chocolate-coated, deep-fried existence. I'm proud of some of the changes I've made. I don't find it all that hard to stay away from sugar stuff (although yeah, I miss me some cookies), and what cravings I do have are easily enough satisfied with some items made with Splenda, things like Sugar Free Jell-o Pudding (but not the Jell-o itself, oddly enough) and some fakey-fake chocolate ice cream by Breyers. There are a number of diet soft drinks I can have, but honestly, I mainly end up drinking lots of Propel.
The thing that's hard to fight is carbs. And honestly, I snack more than I should, and I exercise less than I should, and so I lose less weight than I should. This last twenty (okay, shut up, twenty-five now) pounds is going to be a challenge. It's funny, too, because I have lost about, and this is not a lie, seventy pounds since college. Man, I was a treat for the eyes back then.
To help with these last remnants of Jabba the Huttliness, my doctor prescribed Phentermine, a diet pill that I thought was all controversial until I actually started reading about it. Turns out Phentermine was the "phen" part of Fen-phen, and it was the other part, the Fenfluramine, that was messing people up. Phentermine doesn't appear to be a big deal, although it is very tightly controlled and is not intended for the 125-pound purging sorority girl so much as people with a medical reason to lose weight, like the morbidly obese and, well, me.
As for side effects, Phentermine can affect your blood pressure, but my BP is completely, weirdly normal. According to Dr. Hottie and the stuff I'm reading, it also can make you jumpy, and after one short afternoon on it, all I can say is "yep".
So between the Phentermine and a newly invigorated exercise program (I am Bikezilla these days), be ready for the hot new Rob.
Slim. Sexy. And jumpy as fuck.
Subscribe to:
Posts (Atom)
