Showing posts with label diabetes. Show all posts
Showing posts with label diabetes. Show all posts
Tuesday, May 5, 2020
Glass
It's crowded behind the starting line
but the people around her take some of the chill off the morning air
She stands in shorts and a jog bra,
gloves and arm warmers,
a band around her head keeping her ears warm
minutes before the start
She goes into her routine
Kneels and checks the snugness of her shoes
Makes sure the laces are securely tied
At this point she always notices how
from knee high
The runners at a marathon are like a forest of legs
So many sinewy legs
So many miles
So many stories
She checks the fit of her shorts, her top
Then pulls the insulin pump from her waistband
She sees her blood sugar number on its touch screen
And a graph indicating whether it is rising or falling
She smiles at the technology helping her today
It hasn't always been this way
Her first syringe was made of glass.
She didn't like shots, but adjusted fast
A pediatric nurse told her Mom to be proud
then, very serious, but not very loud
"She's a brave little girl, but she may not last"
Fifty-five years on
she’s about to run
she’s about to run
yet another marathon
comfortable in the crowd at the starting line
Friday, October 11, 2019
Tuesday, October 17, 2017
A Haiku
New post dedicated to Type One Run. A Haiku.
on the longest run,
no end in sight, remember
leave no ones behind
OK, one more.
we're incurable
we run with diabetes
not away from it
Credit to Craig Stubing for the "Leave No Ones Behind" motto and James Mansfield for teaching me to count syllables.
on the longest run,
no end in sight, remember
leave no ones behind
OK, one more.
we're incurable
we run with diabetes
not away from it
Credit to Craig Stubing for the "Leave No Ones Behind" motto and James Mansfield for teaching me to count syllables.
Wednesday, May 24, 2017
That Thing on my Arm
A couple of weeks ago, I was just getting ready to leave the gym, stuffing my sweaty shirt into my bag in the locker room, when this guy, Burt, came over and said, "I hope you don't mind my asking, but what's that thing on your arm?"
I said, "I don't mind you asking, but it's a long story, and you wouldn't believe it anyway."
He seemed amused, even though I wasn't trying to be funny. He kind of laughed and said, "Well, that just makes me more curious!"
I said, "Look, if I tell you what I know, you won't believe me, and you still won't know what it is."
Now his brow furrowed. I couldn't tell if his face was red because of his workout, or because he was getting pissed off at me.
"I'll believe you! Just tell me!"
"Then you'll just drop the subject and leave me alone?"
"Sure."
So I told him the story.
"OK. I was walking the dog one night, and suddenly I was surrounded by a bright light shining down from the sky. I looked up toward the source of the light, but it was so blindingly bright, I couldn't see any details. I could see that it was coming closer and closer, and as it did, I started to hear a high-pitched noise getting louder and louder... then I blacked out.
When I came to, it was hours later, in the early morning, before dawn. I was a mile away, lying in an empty parking lot, and I had this thing on my arm.
I knew where I was, so I was able to walk home. My dog was on the porch, all right, but shivering with fright.
Anyway, I don't know what it is, but that's how it got there."
"Why don't you just pull it off then?" He asked, clearly thinking I was pulling his leg.
"Whenever I think about doing something like that, a voice in my head says, 'DO NOT REMOVE THE TRACKING DEVICE.' and I forget about it. It really doesn't bother me."
"How about if I pull it off for you?" Burt was obviously angry now.
"Whenever someone starts to do that, I black out again. Please don't do that."
"Oh, so you do this a lot?" He asked, moving closer.
"I'm starting to hear that high-pitched noise. Please don't..."
Then I blacked out.
I came back to consciousness miles away, in the woods, with a shovel in my hands, standing on a mound of freshly turned earth. I was able to follow my footprints back to my car. They were deep footprints, as if I had been carrying something heavy. My phone was there, so I figured out where I was and drove home.
But I would like to know what happened when I blacked out. I would ask Burt, but I haven't seen him around the gym for a couple of weeks.
 |
| Actual photo of that thing on my arm |
He seemed amused, even though I wasn't trying to be funny. He kind of laughed and said, "Well, that just makes me more curious!"
I said, "Look, if I tell you what I know, you won't believe me, and you still won't know what it is."
Now his brow furrowed. I couldn't tell if his face was red because of his workout, or because he was getting pissed off at me.
"I'll believe you! Just tell me!"
"Then you'll just drop the subject and leave me alone?"
"Sure."
So I told him the story.
"OK. I was walking the dog one night, and suddenly I was surrounded by a bright light shining down from the sky. I looked up toward the source of the light, but it was so blindingly bright, I couldn't see any details. I could see that it was coming closer and closer, and as it did, I started to hear a high-pitched noise getting louder and louder... then I blacked out.
When I came to, it was hours later, in the early morning, before dawn. I was a mile away, lying in an empty parking lot, and I had this thing on my arm.
I knew where I was, so I was able to walk home. My dog was on the porch, all right, but shivering with fright.
Anyway, I don't know what it is, but that's how it got there."
"Why don't you just pull it off then?" He asked, clearly thinking I was pulling his leg.
"Whenever I think about doing something like that, a voice in my head says, 'DO NOT REMOVE THE TRACKING DEVICE.' and I forget about it. It really doesn't bother me."
"How about if I pull it off for you?" Burt was obviously angry now.
"Whenever someone starts to do that, I black out again. Please don't do that."
"Oh, so you do this a lot?" He asked, moving closer.
"I'm starting to hear that high-pitched noise. Please don't..."
Then I blacked out.
I came back to consciousness miles away, in the woods, with a shovel in my hands, standing on a mound of freshly turned earth. I was able to follow my footprints back to my car. They were deep footprints, as if I had been carrying something heavy. My phone was there, so I figured out where I was and drove home.
But I would like to know what happened when I blacked out. I would ask Burt, but I haven't seen him around the gym for a couple of weeks.
Friday, October 19, 2012
No, Dude Working at Vitamin Store...
Earlier this week I was shopping in a local franchise of a nationwide vitamin store chain, and the saleswoman there asked me about my tee shirt. I was wearing a "Team Diabetes" shirt from a marathon several years ago.
The vitamin store woman told me that her mother was a type 1 diabetic "Red Strider" and that they were going to do the Step Out Walk to Stop Diabetes together in Griffith Park on October 27th.
We had a nice talk about diabetes-related events. I told her I couldn't do the event in Griffith Park in LA because I was planning to go to the TCOYD Conference and Health Expo in San Diego. I told her about Insulindependence and some of the events I've been involved in with that organization.
So then the guy at the cash register said, "You know another web site you should check out is ..."
And he helpfully told me about a raw food diet web site, and assured me that it was helpful to many diabetics.
I started to explain that I was type 1, and he said he knew about type 1 and type 2 and the difference. He didn't seem totally ignorant. But as I tried to tell him that diet can only do so much, he would agree, then start telling me how good this raw food diet is.
So I started to tell him about this guy from Phoenix, a type 1 diabetic who earlier this year was convinced that a spiritual healer could cure him with a drastically modified diet, herbal detox, reducing his insulin...
While I told this story, the vitamin store dude kept saying, "Yeah!" "Uh huh." like it all made sense and sounded right to him.
I knew he wasn't getting the point of the story, but the look of shock on his face was so profound it shocked me when I finally said, "... then he died."
"He died?!"
"Yeah, he died."
Yes, vitamin store dude, he died. Yes, this is serious.
No, I can't cure myself by eating raw food.
I think the saleswoman smiled. She may have tried to have a talk about diabetes with this guy before.
.
The vitamin store woman told me that her mother was a type 1 diabetic "Red Strider" and that they were going to do the Step Out Walk to Stop Diabetes together in Griffith Park on October 27th.
We had a nice talk about diabetes-related events. I told her I couldn't do the event in Griffith Park in LA because I was planning to go to the TCOYD Conference and Health Expo in San Diego. I told her about Insulindependence and some of the events I've been involved in with that organization.
So then the guy at the cash register said, "You know another web site you should check out is ..."
And he helpfully told me about a raw food diet web site, and assured me that it was helpful to many diabetics.
I started to explain that I was type 1, and he said he knew about type 1 and type 2 and the difference. He didn't seem totally ignorant. But as I tried to tell him that diet can only do so much, he would agree, then start telling me how good this raw food diet is.
So I started to tell him about this guy from Phoenix, a type 1 diabetic who earlier this year was convinced that a spiritual healer could cure him with a drastically modified diet, herbal detox, reducing his insulin...
While I told this story, the vitamin store dude kept saying, "Yeah!" "Uh huh." like it all made sense and sounded right to him.
I knew he wasn't getting the point of the story, but the look of shock on his face was so profound it shocked me when I finally said, "... then he died."
"He died?!"
"Yeah, he died."
Yes, vitamin store dude, he died. Yes, this is serious.
No, I can't cure myself by eating raw food.
I think the saleswoman smiled. She may have tried to have a talk about diabetes with this guy before.
.
Thursday, September 13, 2012
Diabetic Running Gear
Hey, reader,
I've been doing a bit of running lately, but not enough. When I get out there, I'm having fun, so I'm confident that I'll be able to build up some more mileage before meeting up with the Insulindependence crowd at the Carlsbad Marathon, which is the next event in which I'm sure I'll participate.
But today I'm just going to share a report on the diabetes gear I take with me on runs.
Glucose tablets, or some source of quick carbohydrates:
Some ID, indicating that you are diabetic:
A meter:
A meter is so much smaller than so many less important things people run with, there's really no excuse for not carrying one except if you're not going far. The little piece of cloth is for those few times when it might be necessary to dry your fingers to get a test.
An infusion site:
An insulin pump:
My DexCom sensor and transmitter:
My DexCom receiver:
Then of course there are all of the ordinary runner things, a watch, maybe some Gu, some water...
It does take some organization sometimes to get out the door.
.
I've been doing a bit of running lately, but not enough. When I get out there, I'm having fun, so I'm confident that I'll be able to build up some more mileage before meeting up with the Insulindependence crowd at the Carlsbad Marathon, which is the next event in which I'm sure I'll participate.
But today I'm just going to share a report on the diabetes gear I take with me on runs.
Glucose tablets, or some source of quick carbohydrates:
 |
| These are the store brand glucose tablets. Glucolift makes a tastier, all-natural alternative, but this is what I have right now. |
 |
| This is my MedicAlert ID. I started with the MedicAlert Foundation in 1974, so I'm not going to change now. |
 | |
| OneTouch Ultra Mini meter, lancet device, a few strips in an old Listerine Strips container, a piece of tech fiber cloth (like ShamWow) and plastic bag to hold it all. |
An infusion site:
 |
| What a fat model I had pose for these pictures, huh? |
 |
| My Animas Ping. |
 |
| That's the back of my arm near my shoulder. |
 |
| It's in an iPhone arm band wrapped around my forearm. I can see my blood sugar trend as easily as the time on my watch. |
It does take some organization sometimes to get out the door.
.
Tuesday, July 31, 2012
Testing Limits in Montana
I had the good fortune to spend a week hiking in the mountains of Montana with a group of diabetics, and one non-diabetic.
I say that it was good fortune because:
a) It was an unforgettable experience.
b) There's no way I would have done this on my own.
https://picasaweb.google.com/100190050835559964278/Montana2012
In case you were wondering, I used about a third less insulin than usual every day of this five day hike.
I posted a picture of a 100 I got on the last morning in the mountains at One Hundred BG.
.
I say that it was good fortune because:
a) It was an unforgettable experience.
b) There's no way I would have done this on my own.
This was another adventure organized by the Testing Limits club of Insulindependence.
I don't think I could possibly describe this trip, so I will just ask you to follow the link to my pictures if you're interested.https://picasaweb.google.com/100190050835559964278/Montana2012
In case you were wondering, I used about a third less insulin than usual every day of this five day hike.
I posted a picture of a 100 I got on the last morning in the mountains at One Hundred BG.
.
Monday, May 7, 2012
I'm back
Hello. I'm back, at least for one blog post.
I have moved from Chandler, AZ to Simi Valley, CA. Simi Valley is hills and trails, awesome running territory.
I'm totally out of shape, but I did this run last Saturday.
What else is new? There's a new No Sugar Added Poetry Book coming out from the Diabetes Hands Foundation, and it looks like I'll have a couple of poems in it, both about death and diabetes. Inspiring, I know.
Here are a couple of other things I wrote recently, after poetry was collected for the book.
Blue Candles
I thought about buying blue candles
In symbolic support for the dead
But I would hope never to light one
That they'd melt in a drawer instead.
my eyes
I hate what you see in my eyes
I know you only know because you love me
Please, when I come around
I mean me
not the me with barren, hungry blood
not the angry, resentful me
I hate that you see it in my eyes
before I know myself
I hate that you learned to notice
please when I come around
forgive me.
If someone can get grouchy
missing a meal
what happens when the brain is starving?
I know, because I've felt it
You know, because you've seen it
Please forgive me
I hate what you see in my eyes
That's all for today. I have at least a couple other blog posts half-written, but you know how it goes with this.
.
I have moved from Chandler, AZ to Simi Valley, CA. Simi Valley is hills and trails, awesome running territory.
I'm totally out of shape, but I did this run last Saturday.
What else is new? There's a new No Sugar Added Poetry Book coming out from the Diabetes Hands Foundation, and it looks like I'll have a couple of poems in it, both about death and diabetes. Inspiring, I know.
Here are a couple of other things I wrote recently, after poetry was collected for the book.
Blue Candles
I thought about buying blue candles
In symbolic support for the dead
But I would hope never to light one
That they'd melt in a drawer instead.
my eyes
I hate what you see in my eyes
I know you only know because you love me
Please, when I come around
I mean me
not the me with barren, hungry blood
not the angry, resentful me
I hate that you see it in my eyes
before I know myself
I hate that you learned to notice
please when I come around
forgive me.
If someone can get grouchy
missing a meal
what happens when the brain is starving?
I know, because I've felt it
You know, because you've seen it
Please forgive me
I hate what you see in my eyes
That's all for today. I have at least a couple other blog posts half-written, but you know how it goes with this.
.
Saturday, October 15, 2011
Bad-Assedness
I wrote this a few days ago in the "Diabetics Who Run Marathons" group on TuDiabetes. It occurs to me that it might be OK for a blog post, and I'm not writing much else. So here it is.
So... I've been thinking about the headline "Stunts to Impress" in Higdon's advice on multiple marathons, and the much appreciated comments on me being "BADASS" and "amazing."
Of course I'm often looking for opportunities in the conversation here to brag about things I've done. I like to be called bad-ass. And I don't see anything wrong with that. Some of the greatest achievements of mankind have been done so someone could say the equivalent of "Look, Ma! No hands!"
A good part of people doing this is that it expands the realm of possibilities for others.
In that spirit I feel like I should point out that I know a type 1 diabetic who's run about twice as many marathons as I have, and run them faster.
I've met two diabetics who have gotten the silver buckle at the Western States 100 mile endurance run, and I'm aware of at least one other whom I haven't met. You get the silver buckle for finishing in less than 24 hours. There are probably others I'm not aware of.
There is a type 1 diabetic world class marathon and ultra marathon runner.
I could go on. I guess the point is that while I like being called "BADASS" and that's at least part of why I do some of the things I do, I'm aware that there are others more bad-ass than I am.
And 14 years ago I was a diabetic runner afraid to try a marathon. I was inspired and comforted by reading about or meeting other diabetic athletes, and not just the fantastic athletic ones, but the ordinary folks like me.
Wherever you're at with diabetes and exercise, there are people ahead of you and behind you on the bad-ass scale. Well, since everyone is different, and every life situation is different, there really isn't a scale we can all be measured against.
We are all inspiring each other.
Reading back over this, I kind of rambled. I hope I had something to say.
"Stunts to Impress" aren't necessarily a bad thing.
In other news, along with a contingent of runners from Glucomotive, I ran the Denver Rock 'N' Roll Marathon last Sunday.
So... I've been thinking about the headline "Stunts to Impress" in Higdon's advice on multiple marathons, and the much appreciated comments on me being "BADASS" and "amazing."
Of course I'm often looking for opportunities in the conversation here to brag about things I've done. I like to be called bad-ass. And I don't see anything wrong with that. Some of the greatest achievements of mankind have been done so someone could say the equivalent of "Look, Ma! No hands!"
A good part of people doing this is that it expands the realm of possibilities for others.
In that spirit I feel like I should point out that I know a type 1 diabetic who's run about twice as many marathons as I have, and run them faster.
I've met two diabetics who have gotten the silver buckle at the Western States 100 mile endurance run, and I'm aware of at least one other whom I haven't met. You get the silver buckle for finishing in less than 24 hours. There are probably others I'm not aware of.
There is a type 1 diabetic world class marathon and ultra marathon runner.
I could go on. I guess the point is that while I like being called "BADASS" and that's at least part of why I do some of the things I do, I'm aware that there are others more bad-ass than I am.
And 14 years ago I was a diabetic runner afraid to try a marathon. I was inspired and comforted by reading about or meeting other diabetic athletes, and not just the fantastic athletic ones, but the ordinary folks like me.
Wherever you're at with diabetes and exercise, there are people ahead of you and behind you on the bad-ass scale. Well, since everyone is different, and every life situation is different, there really isn't a scale we can all be measured against.
We are all inspiring each other.
Reading back over this, I kind of rambled. I hope I had something to say.
"Stunts to Impress" aren't necessarily a bad thing.
In other news, along with a contingent of runners from Glucomotive, I ran the Denver Rock 'N' Roll Marathon last Sunday.
Saturday, October 8, 2011
Team Type 1 Has No Stout Members
It's true. James Stout, who was a member of the Team Type 1 Pro Cycling squad was terminated last November.
Team Type 1 says he was terminated for two infractions:
1) Wearing this shirt to a party at a friend's house:
2) Sending this tweet from his twitter account:
I don't have a big problem with Team Type 1 deciding when to terminate the contract of a professional rider. They have to be able to make those decisions, even if I feel they're being puritanical, prudish prigs about it, they have to draw the line somewhere, and it's a very subjective thing.
I don't hold it against them that they were never able to help James Stout with his visa, since I don't personally know how difficult it is to arrange a work visa for a professional cyclist. It may simply take a long time, or there may have been some bureaucratic snafu. It could be due to incompetence, whether at Team Type 1 or a government office.
I don't even hold it against Team Type 1 that they stopped providing insulin to James Stout as they had agreed. There may have been very good reasons why they couldn't afford to be responsible for riders' medications. It may even have been the Willem Van den Eynde case that made them make that decision.
Oh, maybe I should explain that Willem Van den Eynde is another of the type 1 diabetic bike racers who rode for Team Type 1 and felt abused. I only mention it here because Willem said that Team Type 1 failed to provide the health care he was promised. It's possible that his case caused enough problems that Team Type 1 decided not to be involved to the same extent in the medical requirements of riders.
In 2009, 18 year old Willem was never sure of medical supplies, mainly insulin and test strips, from the time Team Type 1 brought him over from Belgium until he got money from his parents to go back home. His A1c went from being consistently in the 7s to being 9.9 after several months with Team Type 1.
But I was about to say what really disturbs me about the actions of Team Type 1 in James Stout's case.
They did not communicate to him that they were about to terminate his employment, that they were in the process of terminating, or that he was terminated, until he left the USA. Then they told him his employment had been terminated months earlier.
They stopped paying him and helping him with diabetic supplies, stopped dealing with him at all. It's almost as if they were waiting for him to quit instead of telling him he was fired. Knowing that they've treated others similarly makes this seem like a plausible explanation.
They let him think he still worked for them. He continued to represent Team Type 1 at events. He continued to communicate with them about what he was doing. He would ask about his pay and his work visa, and there was always some delay.
You might wonder how he could go on that way, working at a job he wasn't getting paid for. I can't explain his actions. I can only guess. My guess is that like many of us he was inspired by what Team Type 1 has accomplished and what it represents. I guess he was glad that he was a part of it, and he didn't want to give it up.
Although I have many friends on Team Type 1 teams, cyclists, runners, triathletes... and I love to read about and hear about the inspiring things they're doing, I worry about what is happening to kids like James and Willem, and the others who are afraid to speak out.
I worry about the riders breaking their backs to support the team's mission.
I worry that the mission and the message will be corrupted if the organization doesn't wise up and treat these athletes fairly.
Meanwhile, I've come up with a couple of ideas for shirts:
Please enter any shirt ideas you have in the comments below.
Stout podcast about Team Type 1 on Crank Cycling, when Stout believed he worked for Team Type 1.
http://www.crankcycling.com/podcast-interview-with-team-type-1s-james-stout/
A two part Bikezilla interview with James Stout and the author's analysis:
http://cyclismas.com/2011/07/bikezilla-interview-with-james-stout-part-1/
http://cyclismas.com/2011/07/bikezilla-interview-with-james-stout-part-2/
http://cyclismas.com/2011/08/team-type-1-and-electric-kool-aid-litmus-test/
A letter from a lawyer friend sent in a futile attempt at reasoning with Team Type 1 management for decent treatment:
http://www.newcyclingpathway.com/news/blog/the-global-mission-of-team-type-1-and-the-ethics-of-managing-a-team
A post by James Stout about his feelings toward Team Type 1, which are not all bad:
http://www.newcyclingpathway.com/news/blog/team-type-1-and-ethics-a-post-from-james-stout
Willem Van den Eynde's Team Type 1 story, never disputed by the team.
http://forum.cyclingnews.com/showthread.php?t=645
Team Type 1 response, or lack thereof re: the treatment Willem Van den Eynde got from Team Type 1:
http://www.podiumcafe.com/2009/5/7/867897/team-type-1-a-sad-truth
.
Team Type 1 says he was terminated for two infractions:
1) Wearing this shirt to a party at a friend's house:
2) Sending this tweet from his twitter account:
RT @AJELive: Afghan president Hamid Karzai says that the killed of Osama bin Laden is very important news. #AlJazeera #noshitsherlock
I don't have a big problem with Team Type 1 deciding when to terminate the contract of a professional rider. They have to be able to make those decisions, even if I feel they're being puritanical, prudish prigs about it, they have to draw the line somewhere, and it's a very subjective thing.
I don't hold it against them that they were never able to help James Stout with his visa, since I don't personally know how difficult it is to arrange a work visa for a professional cyclist. It may simply take a long time, or there may have been some bureaucratic snafu. It could be due to incompetence, whether at Team Type 1 or a government office.
I don't even hold it against Team Type 1 that they stopped providing insulin to James Stout as they had agreed. There may have been very good reasons why they couldn't afford to be responsible for riders' medications. It may even have been the Willem Van den Eynde case that made them make that decision.
Oh, maybe I should explain that Willem Van den Eynde is another of the type 1 diabetic bike racers who rode for Team Type 1 and felt abused. I only mention it here because Willem said that Team Type 1 failed to provide the health care he was promised. It's possible that his case caused enough problems that Team Type 1 decided not to be involved to the same extent in the medical requirements of riders.
In 2009, 18 year old Willem was never sure of medical supplies, mainly insulin and test strips, from the time Team Type 1 brought him over from Belgium until he got money from his parents to go back home. His A1c went from being consistently in the 7s to being 9.9 after several months with Team Type 1.
But I was about to say what really disturbs me about the actions of Team Type 1 in James Stout's case.
They did not communicate to him that they were about to terminate his employment, that they were in the process of terminating, or that he was terminated, until he left the USA. Then they told him his employment had been terminated months earlier.
They stopped paying him and helping him with diabetic supplies, stopped dealing with him at all. It's almost as if they were waiting for him to quit instead of telling him he was fired. Knowing that they've treated others similarly makes this seem like a plausible explanation.
They let him think he still worked for them. He continued to represent Team Type 1 at events. He continued to communicate with them about what he was doing. He would ask about his pay and his work visa, and there was always some delay.
You might wonder how he could go on that way, working at a job he wasn't getting paid for. I can't explain his actions. I can only guess. My guess is that like many of us he was inspired by what Team Type 1 has accomplished and what it represents. I guess he was glad that he was a part of it, and he didn't want to give it up.
Although I have many friends on Team Type 1 teams, cyclists, runners, triathletes... and I love to read about and hear about the inspiring things they're doing, I worry about what is happening to kids like James and Willem, and the others who are afraid to speak out.
I worry about the riders breaking their backs to support the team's mission.
I worry that the mission and the message will be corrupted if the organization doesn't wise up and treat these athletes fairly.
Meanwhile, I've come up with a couple of ideas for shirts:
Please enter any shirt ideas you have in the comments below.
Stout podcast about Team Type 1 on Crank Cycling, when Stout believed he worked for Team Type 1.
http://www.crankcycling.com/podcast-interview-with-team-type-1s-james-stout/
A two part Bikezilla interview with James Stout and the author's analysis:
http://cyclismas.com/2011/07/bikezilla-interview-with-james-stout-part-1/
http://cyclismas.com/2011/07/bikezilla-interview-with-james-stout-part-2/
http://cyclismas.com/2011/08/team-type-1-and-electric-kool-aid-litmus-test/
A letter from a lawyer friend sent in a futile attempt at reasoning with Team Type 1 management for decent treatment:
http://www.newcyclingpathway.com/news/blog/the-global-mission-of-team-type-1-and-the-ethics-of-managing-a-team
A post by James Stout about his feelings toward Team Type 1, which are not all bad:
http://www.newcyclingpathway.com/news/blog/team-type-1-and-ethics-a-post-from-james-stout
Willem Van den Eynde's Team Type 1 story, never disputed by the team.
http://forum.cyclingnews.com/showthread.php?t=645
Team Type 1 response, or lack thereof re: the treatment Willem Van den Eynde got from Team Type 1:
http://www.podiumcafe.com/2009/5/7/867897/team-type-1-a-sad-truth
.
Friday, October 7, 2011
the Politics of Diabetes
I know I haven't been blogging for a while. I don't know exactly why. I really can't say that I've been too busy. I've been letting a lot of things in my life slide.
I have friends who can keep writing new stuff day after day. And it's interesting stuff.
It's honest. It comes from the heart. They are putting their lives out there for the world to see.
It's easier for some of them, because they're nice people. They wouldn't be so open with their thoughts and feelings if they were selfish, egotistical, greedy, lazy, apathetic, lecherous, chauvinistic, cantankerous curmudgeons like me.
But I'll try to blog more often anyway, because as I've observed before, if you don't write anything, no one follows your blog.
If you follow my twitter account, then you know one of the areas which I'm obsessed with, but I don't blog about, is politics. I have felt that this blog was not about politics, and it would be easy for me to drive away people who were interested in diabetes and endurance events if I posted too much about politics.
But on twitter, you're probably seeing more than you'd like of my political opinions. Too bad.
I've decided I may occasionally say something about things happening in the news, including political events or non-events that are in the headlines.
That's because these things do involve diabetes and how people with diabetes live.
Of the two main political parties in the US, one has supported a rational approach to stem cell research, while the other has opposed it. As a diabetic, I would like scientists to be able to explore all ethical avenues which might lead to a cure.
One party supported taking some action toward affordable health care for all, and one party wants to repeal the little that has been done. As a diabetic, I would like to be confident that I will not find myself unable to afford the best possible treatment.
One party has become decidedly anti-science. As a diabetic, I depend on science every day to survive.
That's probably enough for today.
.
I have friends who can keep writing new stuff day after day. And it's interesting stuff.
It's honest. It comes from the heart. They are putting their lives out there for the world to see.
It's easier for some of them, because they're nice people. They wouldn't be so open with their thoughts and feelings if they were selfish, egotistical, greedy, lazy, apathetic, lecherous, chauvinistic, cantankerous curmudgeons like me.
But I'll try to blog more often anyway, because as I've observed before, if you don't write anything, no one follows your blog.
If you follow my twitter account, then you know one of the areas which I'm obsessed with, but I don't blog about, is politics. I have felt that this blog was not about politics, and it would be easy for me to drive away people who were interested in diabetes and endurance events if I posted too much about politics.
But on twitter, you're probably seeing more than you'd like of my political opinions. Too bad.
I've decided I may occasionally say something about things happening in the news, including political events or non-events that are in the headlines.
That's because these things do involve diabetes and how people with diabetes live.
Of the two main political parties in the US, one has supported a rational approach to stem cell research, while the other has opposed it. As a diabetic, I would like scientists to be able to explore all ethical avenues which might lead to a cure.
One party supported taking some action toward affordable health care for all, and one party wants to repeal the little that has been done. As a diabetic, I would like to be confident that I will not find myself unable to afford the best possible treatment.
One party has become decidedly anti-science. As a diabetic, I depend on science every day to survive.
That's probably enough for today.
.
Tuesday, February 22, 2011
Wearing the D Gear
What seems like many years ago I read about Bill King running marathons with a glucose meter strapped on his wrist. I tried a few ways to do that myself, but it seemed like more hassle than it was worth. It's really not easy to insert a strip, get a drop of blood, and touch it to the strip, all pretty much using one hand. It's more convenient to carry the meter elsewhere, like a SPIbelt, and take it out when you need it.
But at Ironman Arizona in 2009, I saw Bill Carlson with a Dexcom receiver in a plastic bag duct-taped to his forearm. That looked convenient, but painful to remove. Bill had his current blood sugar trend at the touch of a button, right there like a wrist watch.
So I've given some thought, and done some experiments, in that direction.
My first thoughts went toward sleeve-like things, cheap garments from a thrift store, cut-off tube socks or sleeves with some modification to hold the Dexcom.
I had this idea that all I really needed to do was to wrap the Dexcom in plastic wrap. Then I thought, well, just wrap it all the way around my arm. It's actually difficult to wrap my arm and the Dexcom together that way, though, and it would become a sweaty mess very quickly.
I had used stretch bandage that comes in rolls, one brand is called Co-Band, to attach some things to my bike before. It's the stuff they wrap your elbow in when you give blood. It seemed like this might work for this purpose also.
So here's something that seemed to work, the Dexcom receiver wrapped in plastic wrap with lots of plastic hanging off the ends, then the ends wrapped onto my arm using stretch bandage material.
This seems to hang on well enough while biking. I haven't tried it on a run yet. I'll probably go back to the sleeve idea, since it would save a lot of time in the swim to bike transition to have something I could just pull on, instead of wrapping my arm. I can't see fitting my wetsuit over this, even if I wanted to.
.
But at Ironman Arizona in 2009, I saw Bill Carlson with a Dexcom receiver in a plastic bag duct-taped to his forearm. That looked convenient, but painful to remove. Bill had his current blood sugar trend at the touch of a button, right there like a wrist watch.
So I've given some thought, and done some experiments, in that direction.
My first thoughts went toward sleeve-like things, cheap garments from a thrift store, cut-off tube socks or sleeves with some modification to hold the Dexcom.
I had this idea that all I really needed to do was to wrap the Dexcom in plastic wrap. Then I thought, well, just wrap it all the way around my arm. It's actually difficult to wrap my arm and the Dexcom together that way, though, and it would become a sweaty mess very quickly.
I had used stretch bandage that comes in rolls, one brand is called Co-Band, to attach some things to my bike before. It's the stuff they wrap your elbow in when you give blood. It seemed like this might work for this purpose also.
So here's something that seemed to work, the Dexcom receiver wrapped in plastic wrap with lots of plastic hanging off the ends, then the ends wrapped onto my arm using stretch bandage material.
This seems to hang on well enough while biking. I haven't tried it on a run yet. I'll probably go back to the sleeve idea, since it would save a lot of time in the swim to bike transition to have something I could just pull on, instead of wrapping my arm. I can't see fitting my wetsuit over this, even if I wanted to.
.
Saturday, January 1, 2011
Wednesday, November 10, 2010
Medtronic and "upgrading"
My insulin pump, a Medtronic Paradigm 522, is out of warranty, so my insurance will cover a new one. Medtronic would like me to upgrade to a Revel, but I don't think I will.
Everyone has their own wants and needs, and Medtronic may be the best brand for a lot of people. I just don't think it's right for me at this time. I've heard their sales pitches and looked at the features online. Even as Medtronic explains it, I don't feel great about choosing Medtronic.
Here are the features Medtronic mentions in a comparison with other pump brands, with my thoughts on them highlighted.
o Insulin Pump With Built-In CGM
I don't care. I've used the CGM, and I'm unimpressed. I wrote about it here before, saying how I both loved and hated it. From what I've heard, the other CGM option available is much more user-friendly, even though it is not integrated with a pump. The bottom line is that a CGM that is seldom used is not much better than no CGM at all.
o Always Tracks Active Insulin
This feature matters, but Medtronic is only marginally better than Animas, which loses track of active insulin during a battery change, once every few weeks. Omnipod is stupid in its handling of active insulin, so it's not much to beat them.
o Simple Bolus Calculation
I don't know why Medtronic considers this a feature of their pump. Medtronic is just like everyone else, except for not having a food database. They are critical of the difficulties in using the food databases in the other pumps, but that ignores the fact that with Medtronic you still need to get the carb count, maybe reading a label or something, and punch it in.
o Pediatric Friendly Features
Not being a child, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.
o Specialized Type II Features
As a type 1 diabetic, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.
o Easy Task Completion
The interface is not that good that Medtronic should think it's worth bragging about. Where do they find designers and user interface experts?
o Active Lifestyle
Swimming, sweating, bike riding in the rain. All of these things are facilitated by waterproofing. Medtronic actually calls out "The pump can be detached" as a way you can adapt your pump therapy to your active lifestyle. That's so stupid it's insulting.
o Convenient Software with Clinical Evidence
CareLink sucks. Really, where do they get human interface experts? It's convenient in the same sense that the forms for filing your income tax return with the IRS are convenient. Thanks tons, Medtronic.
o Diabetes Support Team
Medtronic does seem to lead on this, but I only use their support a couple of times a year. So I don't rate this as a high priority for me.
o Partner for Life
All pump companies would like to be my partner for life. It is profitable.
Some companies have dropped out of the pump business. So right now, Medtronic is the oldest company in the insulin pump business. Is PanAm the best airline, or do you prefer to fly TWA?
This is not a selling point for me.
Here are some of the technical features of Medtronic's next generation pump, with my comments highlighted:
New Basal Features in the Paradigm Revel™:
· The smallest basal increment (0.025 U/hr)
· Basal Delivery Pulse based on basal rate volume:
- Delivers in pulses of 0.025 for basal rates from 0.025 to 1 unit per hour
- Delivers in pulses of 0.05 for basal rates from 1 unit per hour to 9.95 units per hour
- Delivers in pulses of 0.10 for basal rates of 10 units per hour or more
I don't care about any of these.
New Bolus Features in the Paradigm Revel™:
· Missed Bolus Reminders
- Set up to 4 per day by time period (i.e.: 11:00 AM – 12:45 PM for lunch missed bolus reminder)
I don't care. Forget to bolus? Happens about once every five years for me. This feature would just be reminding me to bolus when I didn't bolus because I didn't need to.
· The smallest bolus increment (0.025 units) of any pump
· Widest Carbohydrate Ratios available from 1:1gram to 1:200grams
· Adjustable Bolus Scroll Rate feature allows for the most precise bolus dosing: - Default setting is 0.1 units
- When the scroll rate is set to 0.025 units, boluses smaller than 1 unit are calculated to the nearest 0.025 unit
- When the scroll rate is set to 0.025 or 0.05 units, boluses between 1 to 10 units are calculated to the nearest 0.05 unit
- All boluses greater than 10 units are calculated to the nearest 0.1 units
· Variable Bolus Delivery Speed (regardless of scroll rate selected)
- Boluses in the range of 0.025 to 0.975 units are delivered in 0.025 pulses delivered at a very gentle rate of 1 unit in 1 minute 16 seconds.
- Boluses from 0.975 to 9.975 are delivered in 0.05 unit pulses and delivered at a rate of 1.5 units per minute.
- Boluses of 10 units and larger are delivered in pulses of 0.10 and are delivered in 5 minutes. Even a 25 unit bolus is delivered in 5 minutes.
I don't care about any of these.
· Active Insulin is displayed on the "Estimate Detail," "Status" and the "Bolus + Delivery" screens
- Active insulin will be displayed even if the Bolus Wizard is not used
Neat. However, it's not a big deal to have it finally work the way it always should have. And like a lot of these improvements, this seems like a software/firmware upgrade which must have been fairly easy to do.
· High and Low glucose alerts will sound on the Revel™ from a RF meter reading
I don't care. If I check my blood sugar with the meter, I know if I'm high or low from the meter.
· Capture Option
- Allows users to electronically save certain types of information, including BG measurements, amount of insulin used, carbohydrates eaten, exercise and other information that is useful in diabetes management with the CareLink
Nice. However, this saves only a little bit of information. You can fill in more later in CareLink. This is getting better, but still feels like 20th century, rather 21st century technology.
New CGM Features in the Paradigm Revel™:
So far, I have found the CGM almost unusable. All of my comments should be seen in this light. A feature might sound good on its own, but the drawbacks of the whole system probably render it irrelevant to me.
· Predictive Alerts
- Can alert user of a hypo or hyper event 5-30 minutes prior to threshold being hit
- An internal study published this year showed that when Predictive Alerts are used, the hypo detection rate increased by 36% compared to using a low glucose alert alone
Nice.
· Rate of Change Alerts
- Alerts patients to rapid changes in glucose regardless of where the Sensor Glucose is. Rate of change alerts can be set for fall or rise rates from 1.1 mg/dl/min to 5.0 mg/dl/min
Imagine, my blood sugar is 40 but rising quickly, so I get a rate of change alarm. My blood sugar is 350 but falling rapidly, so I get a rate of change alarm. I should not get these alarms.
The only reason I can imagine to provide these alerts in addition to predictive alerts is if the sensor may be totally inaccurate.
· Customizable alert thresholds
- Up to 8 different time buckets can be programmed with individualized high and low thresholds
Nice.
· Historical Sensor Glucose Graphs are displayed for the previous 3, 6, 12 and 24 hours
· Glucose Sensor graph timeouts can be set to 2, 4, 6 minutes or none. If NONE is selected the graph will not time out unless and alert/alarm occurs· Area-Under-the-Curve ( AUC ) metric - New measure of glucose exposure under and over preset glucose threshold
These features are nice, but not a big deal.
· CGM demo option for training purposes
This is totally irrelevant to anyone but a Medtronic sales rep.
· All alerts can be silenced for a set period of time up to 24 hours
I hope they didn't spend any time working on this feature that they could have used doing something useful.
Other important information:
· USB included with all pump purchases not just CGM orders
Neat. However, it's not a big deal to have it finally work the way it always should have.
· Alert Directed Navigation
- When an alert goes off the Revel™ goes directly to the screen to resolve alert, dramatically minimizing button pushing
Neat. However, it's not a big deal to have it finally work the way it always should have.
· Simplified menus and language used (Manual Prime changed to Fill Tubing)
Wow! I mean, wow they really think this is worth mentioning? It only calls attention to the fact that they didn't do it right the first time.
· Auto Calibration has been improved
- Sensor patients can use RF feature to beam readings directly to the Revel™, but they will be asked if they want to use BG reading for calibration
Neat. However, it's not a big deal to have it finally work the way it always should have. Seems like a software/firmware upgrade that should have been done a long time ago.
· CareLink Professional and Personal have been updated and will be available later in March
- Guardian REAL-Time will be on the new version of CL Pro
First, it's been my experience that CareLink sucks. Second, I am personally insulted that there's a version of CareLink that provides additional features for health care professionals, but it's not for lowly diabetic patients.
Once again, I remind everyone that these are just my opinions. I haven't used a Revel or the latest Medtronic CGM sensors.
You may need features I don't care about. You may like things I dislike.
I'm just sharing my thoughts on the decision I'm making.
.
Everyone has their own wants and needs, and Medtronic may be the best brand for a lot of people. I just don't think it's right for me at this time. I've heard their sales pitches and looked at the features online. Even as Medtronic explains it, I don't feel great about choosing Medtronic.
Here are the features Medtronic mentions in a comparison with other pump brands, with my thoughts on them highlighted.
o Insulin Pump With Built-In CGM
I don't care. I've used the CGM, and I'm unimpressed. I wrote about it here before, saying how I both loved and hated it. From what I've heard, the other CGM option available is much more user-friendly, even though it is not integrated with a pump. The bottom line is that a CGM that is seldom used is not much better than no CGM at all.
o Always Tracks Active Insulin
This feature matters, but Medtronic is only marginally better than Animas, which loses track of active insulin during a battery change, once every few weeks. Omnipod is stupid in its handling of active insulin, so it's not much to beat them.
o Simple Bolus Calculation
I don't know why Medtronic considers this a feature of their pump. Medtronic is just like everyone else, except for not having a food database. They are critical of the difficulties in using the food databases in the other pumps, but that ignores the fact that with Medtronic you still need to get the carb count, maybe reading a label or something, and punch it in.
o Pediatric Friendly Features
Not being a child, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.
o Specialized Type II Features
As a type 1 diabetic, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.
o Easy Task Completion
The interface is not that good that Medtronic should think it's worth bragging about. Where do they find designers and user interface experts?
o Active Lifestyle
Swimming, sweating, bike riding in the rain. All of these things are facilitated by waterproofing. Medtronic actually calls out "The pump can be detached" as a way you can adapt your pump therapy to your active lifestyle. That's so stupid it's insulting.
o Convenient Software with Clinical Evidence
CareLink sucks. Really, where do they get human interface experts? It's convenient in the same sense that the forms for filing your income tax return with the IRS are convenient. Thanks tons, Medtronic.
o Diabetes Support Team
Medtronic does seem to lead on this, but I only use their support a couple of times a year. So I don't rate this as a high priority for me.
o Partner for Life
All pump companies would like to be my partner for life. It is profitable.
Some companies have dropped out of the pump business. So right now, Medtronic is the oldest company in the insulin pump business. Is PanAm the best airline, or do you prefer to fly TWA?
This is not a selling point for me.
Here are some of the technical features of Medtronic's next generation pump, with my comments highlighted:
New Basal Features in the Paradigm Revel™:
· The smallest basal increment (0.025 U/hr)
· Basal Delivery Pulse based on basal rate volume:
- Delivers in pulses of 0.025 for basal rates from 0.025 to 1 unit per hour
- Delivers in pulses of 0.05 for basal rates from 1 unit per hour to 9.95 units per hour
- Delivers in pulses of 0.10 for basal rates of 10 units per hour or more
I don't care about any of these.
New Bolus Features in the Paradigm Revel™:
· Missed Bolus Reminders
- Set up to 4 per day by time period (i.e.: 11:00 AM – 12:45 PM for lunch missed bolus reminder)
I don't care. Forget to bolus? Happens about once every five years for me. This feature would just be reminding me to bolus when I didn't bolus because I didn't need to.
· The smallest bolus increment (0.025 units) of any pump
· Widest Carbohydrate Ratios available from 1:1gram to 1:200grams
· Adjustable Bolus Scroll Rate feature allows for the most precise bolus dosing: - Default setting is 0.1 units
- When the scroll rate is set to 0.025 units, boluses smaller than 1 unit are calculated to the nearest 0.025 unit
- When the scroll rate is set to 0.025 or 0.05 units, boluses between 1 to 10 units are calculated to the nearest 0.05 unit
- All boluses greater than 10 units are calculated to the nearest 0.1 units
· Variable Bolus Delivery Speed (regardless of scroll rate selected)
- Boluses in the range of 0.025 to 0.975 units are delivered in 0.025 pulses delivered at a very gentle rate of 1 unit in 1 minute 16 seconds.
- Boluses from 0.975 to 9.975 are delivered in 0.05 unit pulses and delivered at a rate of 1.5 units per minute.
- Boluses of 10 units and larger are delivered in pulses of 0.10 and are delivered in 5 minutes. Even a 25 unit bolus is delivered in 5 minutes.
I don't care about any of these.
· Active Insulin is displayed on the "Estimate Detail," "Status" and the "Bolus + Delivery" screens
- Active insulin will be displayed even if the Bolus Wizard is not used
Neat. However, it's not a big deal to have it finally work the way it always should have. And like a lot of these improvements, this seems like a software/firmware upgrade which must have been fairly easy to do.
· High and Low glucose alerts will sound on the Revel™ from a RF meter reading
I don't care. If I check my blood sugar with the meter, I know if I'm high or low from the meter.
· Capture Option
- Allows users to electronically save certain types of information, including BG measurements, amount of insulin used, carbohydrates eaten, exercise and other information that is useful in diabetes management with the CareLink
Nice. However, this saves only a little bit of information. You can fill in more later in CareLink. This is getting better, but still feels like 20th century, rather 21st century technology.
New CGM Features in the Paradigm Revel™:
So far, I have found the CGM almost unusable. All of my comments should be seen in this light. A feature might sound good on its own, but the drawbacks of the whole system probably render it irrelevant to me.
· Predictive Alerts
- Can alert user of a hypo or hyper event 5-30 minutes prior to threshold being hit
- An internal study published this year showed that when Predictive Alerts are used, the hypo detection rate increased by 36% compared to using a low glucose alert alone
Nice.
· Rate of Change Alerts
- Alerts patients to rapid changes in glucose regardless of where the Sensor Glucose is. Rate of change alerts can be set for fall or rise rates from 1.1 mg/dl/min to 5.0 mg/dl/min
Imagine, my blood sugar is 40 but rising quickly, so I get a rate of change alarm. My blood sugar is 350 but falling rapidly, so I get a rate of change alarm. I should not get these alarms.
The only reason I can imagine to provide these alerts in addition to predictive alerts is if the sensor may be totally inaccurate.
· Customizable alert thresholds
- Up to 8 different time buckets can be programmed with individualized high and low thresholds
Nice.
· Historical Sensor Glucose Graphs are displayed for the previous 3, 6, 12 and 24 hours
· Glucose Sensor graph timeouts can be set to 2, 4, 6 minutes or none. If NONE is selected the graph will not time out unless and alert/alarm occurs· Area-Under-the-Curve ( AUC ) metric - New measure of glucose exposure under and over preset glucose threshold
These features are nice, but not a big deal.
· CGM demo option for training purposes
This is totally irrelevant to anyone but a Medtronic sales rep.
· All alerts can be silenced for a set period of time up to 24 hours
I hope they didn't spend any time working on this feature that they could have used doing something useful.
Other important information:
· USB included with all pump purchases not just CGM orders
Neat. However, it's not a big deal to have it finally work the way it always should have.
· Alert Directed Navigation
- When an alert goes off the Revel™ goes directly to the screen to resolve alert, dramatically minimizing button pushing
Neat. However, it's not a big deal to have it finally work the way it always should have.
· Simplified menus and language used (Manual Prime changed to Fill Tubing)
Wow! I mean, wow they really think this is worth mentioning? It only calls attention to the fact that they didn't do it right the first time.
· Auto Calibration has been improved
- Sensor patients can use RF feature to beam readings directly to the Revel™, but they will be asked if they want to use BG reading for calibration
Neat. However, it's not a big deal to have it finally work the way it always should have. Seems like a software/firmware upgrade that should have been done a long time ago.
· CareLink Professional and Personal have been updated and will be available later in March
- Guardian REAL-Time will be on the new version of CL Pro
First, it's been my experience that CareLink sucks. Second, I am personally insulted that there's a version of CareLink that provides additional features for health care professionals, but it's not for lowly diabetic patients.
Once again, I remind everyone that these are just my opinions. I haven't used a Revel or the latest Medtronic CGM sensors.
You may need features I don't care about. You may like things I dislike.
I'm just sharing my thoughts on the decision I'm making.
 |
| My current pump. |
 |
| What an insulin pump looked like a dozen years ago. |
 |
| A 21st century pump. |
.
Monday, November 8, 2010
The Cure
The Cure
For years they prayed for the day,
the day they could stop
bleeding him for blood sugars.
staring at his food,
counting the carbohydrates,
insulin on board...
They wished they could forget it all,
all of the knowledge and lore,
the glycemic index,
site sensitivity,
medical adhesives,
long-term complications...
... as if it weren't all complicated.
They wanted to stop worrying
about the impact of joyful play
on blood sugar balance.
So they wished for the day,
the day they could get rid of it all...
boxes of test strips,
the sharp things, needles, lancets, syringes,
the technological marvels...
meters, pumps, sensors,
the tools of replacing beta cells
and mimicking
the way the body is supposed to work,
the insulin
would all finally be stacked up in a big pile,
packed up to be sent away.
They wished and prayed the day would come,
But diabetes left in the night,
And with it took their son.
When I first posted this on Tu Diabetes in the Poetry Club, I apologized and wrote, "Why did I write this? I don't know. Maybe I shouldn't have. But here it is."
I'm sorry to be so negative sometimes. I hope that this blog is positive often enough to make up for it. It's sad that when I try to be profound, I'm often profoundly depressing instead of profoundly uplifting or inspiring.
The whole picture is bound to have some dark as well as light, though, when you're trying to show what it's like to live with type 1 diabetes.
So what made me write this?
I've certainly heard of a lot of diabetic children dying, and it's hard not to try to imagine how that must be for parents. And I heard a little bit of what it's like. And right after that, I read about someone else imagining what it would be like to finally have a cure.
The two ideas swam around in my head for a while, then collided. And the above poem is the wreck.
Here's another poem, a Haiku.
The Diagnosis
Your food is poison
But there is an antidote
It is poison too
For more positive feelings, watch this video, and help provide insulin to kids in need:
The BiG Blue Test.
November is National Diabetes Month, and November 14 is World Diabetes Day.
.
For years they prayed for the day,
the day they could stop
bleeding him for blood sugars.
staring at his food,
counting the carbohydrates,
insulin on board...
They wished they could forget it all,
all of the knowledge and lore,
the glycemic index,
site sensitivity,
medical adhesives,
long-term complications...
... as if it weren't all complicated.
They wanted to stop worrying
about the impact of joyful play
on blood sugar balance.
So they wished for the day,
the day they could get rid of it all...
boxes of test strips,
the sharp things, needles, lancets, syringes,
the technological marvels...
meters, pumps, sensors,
the tools of replacing beta cells
and mimicking
the way the body is supposed to work,
the insulin
would all finally be stacked up in a big pile,
packed up to be sent away.
They wished and prayed the day would come,
But diabetes left in the night,
And with it took their son.
When I first posted this on Tu Diabetes in the Poetry Club, I apologized and wrote, "Why did I write this? I don't know. Maybe I shouldn't have. But here it is."
I'm sorry to be so negative sometimes. I hope that this blog is positive often enough to make up for it. It's sad that when I try to be profound, I'm often profoundly depressing instead of profoundly uplifting or inspiring.
The whole picture is bound to have some dark as well as light, though, when you're trying to show what it's like to live with type 1 diabetes.
So what made me write this?
I've certainly heard of a lot of diabetic children dying, and it's hard not to try to imagine how that must be for parents. And I heard a little bit of what it's like. And right after that, I read about someone else imagining what it would be like to finally have a cure.
The two ideas swam around in my head for a while, then collided. And the above poem is the wreck.
Here's another poem, a Haiku.
The Diagnosis
Your food is poison
But there is an antidote
It is poison too
For more positive feelings, watch this video, and help provide insulin to kids in need:
The BiG Blue Test.
November is National Diabetes Month, and November 14 is World Diabetes Day.
.
Friday, November 5, 2010
Yea, though I ride through the valley of death...
Once again I'm blogging well after the event I'm blogging about. If you've been reading this blog, you've probably come to expect that.
If this is your first time here, you probably haven't been waiting for this, so it's all right with you, too.
On October 16th I rode my bicycle across Death Valley with about 350 others, all of us having made the commitment to work toward a cure for type 1 diabetes. In addition to the riders there were dozens of volunteers working at the aid stations, in the SAG (Support And Gear) vehicles, and at the start/finish. Behind every rider there were the many people who made donations that are the real, rather than simply symbolic, investment in a cure.
I want to thank everyone who contributed to my efforts to raise $3000 to cure type 1 diabetes.
However, I'm writing about the symbolic journey across the Valley of Death.
My blood sugar was 152 before breakfast at 5:30, and I didn't bolus as much as I would have if I wasn't about to go for a long ride. Knowing my blood sugar was a little high I didn't check again before the start.
I started riding with friends I had made in the Western Wisconsin Chapter of the JDRF. I was the only rider from the Desert Southwest Chapter. (something we should fix)
Since I had, in my registration for the ride, said that I was riding to honor the memory of Jesse Alswager, and I wanted to share a room, I bunked with Jeff Steuer, a Western Wisconsin rider who who has a 17 year old daughter with type 1 diabetes.
So when I started out, I was riding with Jeff, his sister, Nancy and brother-in-law Keith, and other cheeseheads. I was glad to be welcomed to their group, but I couldn't stay with them.
I almost never do group rides, so I'm not used to sticking to a pace line. When I was in a line, I would either be working harder than I wanted to keep up, or feeling like I was blocked by the rider in front of me and had to coast or even brake. They would go up the hills faster than I was comfortable with, then coast down the other side. Except for Jubilee Pass at the turnaround point, the road was all rolling hills, or at least seemed that way to me.
We had been told that the best plan for success was to get as far as we could while the valley was in shade, before the sun came up over the eastern mountains. We had to do that without, of course, going so hard we ended up worn out before we got to the big climb at Jubilee Pass.
I couldn't see the benefit in coasting downhill, especially in the early going. So I would go to the back of our little pack on the uphills, then keep pedaling and pass everyone on the downhills. Finally, the ups outweighed the downs, and I fell behind and couldn't catch up. But I was going my own, inconsistent pace, riding alone the way I am used to.
I caught up again at Badwater, the first rest stop and the turnaround point for those doing the 32 mile option, but they were well on their way by the time I checked my blood sugar, (126) ate some food, took a couple of pictures, waited in line, and used the restroom.
This stop verified that so far, my hydration and food plan was working well. I hit the road.
That first 16 miles had taken about an hour.
At the pre-ride dinner the night before, it had been announced that we would have a special feature added during this ride, which may become part of all JDRF rides from now on. One mile of the ride would be declared a "mile of silence" to honor those we have lost to diabetes. It could have been any mile, but it was declared mile 23. February 3rd, 2/3, was the day that Jesse Alswager died.
I rode in silence most of the day, but out there between Badwater and the second rest stop, Mormon Point, I rode a mile in silence to honor Jesse, and all others who have died fighting type 1 diabetes.
This stretch was more of the same rolling hills, or actually gaining and losing elevation as the road followed the curves of the mountains on the eastern edge of Death Valley.
We were mostly in the shade of the valley until about 8:30, when the sun came out and the temperature began to climb.
At Mormon Point, 31 miles, my blood sugar was 135, so I was pretty happy with how I was doing. I ate some more from the well-stocked tables, another half banana, another quarter pbj, refilled my three water bottles, and was off again.
The rolling continued for a while, then there was a long, rather steep hill before I reached the next stop, Ashford Mills, at 46 miles. Although the distance between Mormon Point and Ashford Mills was shorter than the distances between the previous two rest stops, with the climb in the heat, it was much harder, and of course, the next segment of the ride, from there to Jubilee Pass was supposed to be 6 miles that would take at least an hour.
My blood sugar at Ashford Mills was 104. There was not a lot of room there. I would have liked it to be higher. I didn't want to panic, though. It wasn't as if I had a real low blood sugar, and it wasn't as if I was really dropping rapidly. It was about 10:15, so I had dropped about 30 points in an hour.
I tried to eat more than I had at the previous stop before setting out on the six mile climb up to Jubilee Pass, about 1300 feet of elevation increase.
It had gotten seriously hot, and I say that as someone who has lived for almost a decade in the Phoenix area. People with thermometers on their bikes were seeing temperatures like 113. Someone said 118.
So I cranked away as best I could, climbing and climbing, trying to keep drinking the warm water I had in my bottles, water that had been ice cold minutes before, feeling more and more exhausted, but knowing I was getting closer to the top.
When I got to the Jubilee Pass aid station, I discovered it is actually a few yards away from the actual summit. For about two seconds I considered riding up to the summit before coming back to stop at the aid station... then I wised up and stopped. I got into the scant shade as quickly as I could, and checked my blood sugar again.
86. Hmm, a little sugar would have made that climb easier.
Bob Panisch, one of the coaches and a CDE came over and asked me how I was doing and what my blood sugar was. I told him and let him know what was going on. He made some good suggestions, but I told him I was going to do this my way.
I could see that he had good reason to be concerned about me. My bike shorts and my jersey were crusty with salt. Many riders were dropping out. I had a borderline low blood sugar.
But I assured him that I had done a lot of hard things before, and I wouldn't be stupid.
I pigged out, refilled everything, and rode to the summit for a picture.
Then I started back. On the way down, one of the coaches asked how I was doing, and I said that I was glad the hard part was over.
He said, "That was tough, but the hard part is getting all the way back."
And he was right. After one large, wonderful cloud blocked the sun for maybe half an hour, the heat did not let up. I felt at times like I could feel waves of heat coming off the pavement. It was like being roasted.
Back at Ashford Mills, my blood sugar was back at 140.
When I reached Mormon Point, it was 144. All was well in that regard.
Then at Badwater it was 198. I was probably getting dehydrated. Looking back, my pace had greatly decreased in that section of the ride. But my reaction was to just not fuel up so much. I probably could have cooled off in the shade a little longer and drank more before going on.
Anyway, an additional rest stop had been set up for us, because of the conditions, about 10 miles from the finish. When I got there, about an hour after I had stopped in Badwater, my blood sugar was still 188.
Figuring that I "only" had ten miles to go, and I would be done soon, I thought it would be a good idea to give myself a small correction bolus, less than I would give if I wasn't riding.
And I didn't eat anything.
Well, those miles dragged on. It was hot. The hills were steep. My body was sore all over. Sure my muscles were sore from working, but my back was sore from being hunched over, my neck was sore from looking up from my hunched over position, my butt and my crotch were sore from hours in the saddle, my feet were sore from pushing down on them all day.
And I was feeling like my blood sugar was low.
So with less than a mile to go, with one last, short, 100 yard climb left before a long downhill into Furnace Creek Ranch, I just stopped. I considered testing my blood sugar, but instead just pulled out a Clif bar and started trying to eat it. That was a poor choice. I only ate the bar because I had been carrying it all day. Before that, I ate gels while I was riding, and replaced them with new ones from the rest stops. I felt silly about everything that I carried the whole way without using it, like my cell phone.
It turns out a Clif bar is really hard to chew and swallow when you're dehydrated.
So I was probably standing by the side of the road for a long time before I started up again. About eight other riders passed me, and of course all asked if I was OK.
I cranked up that last hill, turned the corner, and rolled the remaining half mile in.
At the medical tent (Everyone checks in at the medical tent after finishing. It's a rule at this ride.) my blood sugar was 98. It certainly must have been lower before I stopped to eat the Clif bar.
So it wasn't perfect blood sugar management for the day, two minor lows, enough to affect my energy level, but it was a magnificent experience.
105 miles ridden. 9 and a half hours. 1 mile of silence. $3000. A shot at ending type 1 diabetes.
If this is your first time here, you probably haven't been waiting for this, so it's all right with you, too.
On October 16th I rode my bicycle across Death Valley with about 350 others, all of us having made the commitment to work toward a cure for type 1 diabetes. In addition to the riders there were dozens of volunteers working at the aid stations, in the SAG (Support And Gear) vehicles, and at the start/finish. Behind every rider there were the many people who made donations that are the real, rather than simply symbolic, investment in a cure.
I want to thank everyone who contributed to my efforts to raise $3000 to cure type 1 diabetes.
However, I'm writing about the symbolic journey across the Valley of Death.
My blood sugar was 152 before breakfast at 5:30, and I didn't bolus as much as I would have if I wasn't about to go for a long ride. Knowing my blood sugar was a little high I didn't check again before the start.
I started riding with friends I had made in the Western Wisconsin Chapter of the JDRF. I was the only rider from the Desert Southwest Chapter. (something we should fix)
 |
| Riders lined up behind me |
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| Riders lined up ahead of me |
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| Jeff and me |
 |
| Jeanne, one of the fantastic coaches |
I almost never do group rides, so I'm not used to sticking to a pace line. When I was in a line, I would either be working harder than I wanted to keep up, or feeling like I was blocked by the rider in front of me and had to coast or even brake. They would go up the hills faster than I was comfortable with, then coast down the other side. Except for Jubilee Pass at the turnaround point, the road was all rolling hills, or at least seemed that way to me.
We had been told that the best plan for success was to get as far as we could while the valley was in shade, before the sun came up over the eastern mountains. We had to do that without, of course, going so hard we ended up worn out before we got to the big climb at Jubilee Pass.
I couldn't see the benefit in coasting downhill, especially in the early going. So I would go to the back of our little pack on the uphills, then keep pedaling and pass everyone on the downhills. Finally, the ups outweighed the downs, and I fell behind and couldn't catch up. But I was going my own, inconsistent pace, riding alone the way I am used to.
I caught up again at Badwater, the first rest stop and the turnaround point for those doing the 32 mile option, but they were well on their way by the time I checked my blood sugar, (126) ate some food, took a couple of pictures, waited in line, and used the restroom.
 |
| Badwater. I'll be back. |
That first 16 miles had taken about an hour.
 |
| A couple of Western Wisconsin riders in Godspeed Jesse jerseys. |
I rode in silence most of the day, but out there between Badwater and the second rest stop, Mormon Point, I rode a mile in silence to honor Jesse, and all others who have died fighting type 1 diabetes.
This stretch was more of the same rolling hills, or actually gaining and losing elevation as the road followed the curves of the mountains on the eastern edge of Death Valley.
We were mostly in the shade of the valley until about 8:30, when the sun came out and the temperature began to climb.
At Mormon Point, 31 miles, my blood sugar was 135, so I was pretty happy with how I was doing. I ate some more from the well-stocked tables, another half banana, another quarter pbj, refilled my three water bottles, and was off again.
My blood sugar at Ashford Mills was 104. There was not a lot of room there. I would have liked it to be higher. I didn't want to panic, though. It wasn't as if I had a real low blood sugar, and it wasn't as if I was really dropping rapidly. It was about 10:15, so I had dropped about 30 points in an hour.
I tried to eat more than I had at the previous stop before setting out on the six mile climb up to Jubilee Pass, about 1300 feet of elevation increase.
It had gotten seriously hot, and I say that as someone who has lived for almost a decade in the Phoenix area. People with thermometers on their bikes were seeing temperatures like 113. Someone said 118.
So I cranked away as best I could, climbing and climbing, trying to keep drinking the warm water I had in my bottles, water that had been ice cold minutes before, feeling more and more exhausted, but knowing I was getting closer to the top.
When I got to the Jubilee Pass aid station, I discovered it is actually a few yards away from the actual summit. For about two seconds I considered riding up to the summit before coming back to stop at the aid station... then I wised up and stopped. I got into the scant shade as quickly as I could, and checked my blood sugar again.
86. Hmm, a little sugar would have made that climb easier.
Bob Panisch, one of the coaches and a CDE came over and asked me how I was doing and what my blood sugar was. I told him and let him know what was going on. He made some good suggestions, but I told him I was going to do this my way.
I could see that he had good reason to be concerned about me. My bike shorts and my jersey were crusty with salt. Many riders were dropping out. I had a borderline low blood sugar.
But I assured him that I had done a lot of hard things before, and I wouldn't be stupid.
 |
| More Godspeed Jesse jerseys, with 2/3 on the sleeve. |
 |
| The kind of picture you take when you won't stand in line. |
He said, "That was tough, but the hard part is getting all the way back."
And he was right. After one large, wonderful cloud blocked the sun for maybe half an hour, the heat did not let up. I felt at times like I could feel waves of heat coming off the pavement. It was like being roasted.
Back at Ashford Mills, my blood sugar was back at 140.
When I reached Mormon Point, it was 144. All was well in that regard.
Then at Badwater it was 198. I was probably getting dehydrated. Looking back, my pace had greatly decreased in that section of the ride. But my reaction was to just not fuel up so much. I probably could have cooled off in the shade a little longer and drank more before going on.
Anyway, an additional rest stop had been set up for us, because of the conditions, about 10 miles from the finish. When I got there, about an hour after I had stopped in Badwater, my blood sugar was still 188.
Figuring that I "only" had ten miles to go, and I would be done soon, I thought it would be a good idea to give myself a small correction bolus, less than I would give if I wasn't riding.
And I didn't eat anything.
Well, those miles dragged on. It was hot. The hills were steep. My body was sore all over. Sure my muscles were sore from working, but my back was sore from being hunched over, my neck was sore from looking up from my hunched over position, my butt and my crotch were sore from hours in the saddle, my feet were sore from pushing down on them all day.
And I was feeling like my blood sugar was low.
So with less than a mile to go, with one last, short, 100 yard climb left before a long downhill into Furnace Creek Ranch, I just stopped. I considered testing my blood sugar, but instead just pulled out a Clif bar and started trying to eat it. That was a poor choice. I only ate the bar because I had been carrying it all day. Before that, I ate gels while I was riding, and replaced them with new ones from the rest stops. I felt silly about everything that I carried the whole way without using it, like my cell phone.
It turns out a Clif bar is really hard to chew and swallow when you're dehydrated.
So I was probably standing by the side of the road for a long time before I started up again. About eight other riders passed me, and of course all asked if I was OK.
I cranked up that last hill, turned the corner, and rolled the remaining half mile in.
At the medical tent (Everyone checks in at the medical tent after finishing. It's a rule at this ride.) my blood sugar was 98. It certainly must have been lower before I stopped to eat the Clif bar.
So it wasn't perfect blood sugar management for the day, two minor lows, enough to affect my energy level, but it was a magnificent experience.
105 miles ridden. 9 and a half hours. 1 mile of silence. $3000. A shot at ending type 1 diabetes.
 |
| Keith, Nancy, Jeanne, and Jeff post-ride. |
 |
| Some pictures of Death Valley from Dante's View. |
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| Furnace Creek is toward the upper right. |
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| Badwater is down the mountain from here. |
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| Penny smelling my sweat-salt crusted jersey after I got home. |
Saturday, October 2, 2010
We're Not Stuck
I attended a JDRF Research and Technology Update today. I'm not sure what I expected, but I was curious. I didn't expect to get fired up about the prospect of a cure.
I know, I'm asking all my friends and family to donate to the JDRF, which was founded and is dedicated to the search for a cure for type 1 diabetes. But I wasn't going to get my hopes up that it would happen soon. And I still don't believe a cure is right around the corner.
But one of the local JDRF Outreach Managers, Elizabeth Romero, speaking at the seminar, said something very simple that really hit home for me.
She noted that many of us who have had type 1 diabetes for a long time have become somewhat jaded. We heard when we were diagnosed that a cure was only a few years away, and we've heard that over and over ever since. It's been 36 years for me. That's how long I've been hearing and reading about cures around the corner.
Elizabeth said she understands that. And she said, "But we're not stuck."
She went on to point out many of the things that have come about partly because of the presence of the JDRF, since it was founded 40 years ago.
The essential thing is that there has been a lot of progress. We know more about diabetes now than we have ever known before, and next year we will know more. And the rate of progress is accelerating.
We're not stuck.
We don't have a cure yet, but we're not stuck.
So that's the good part.
The other part of this story is where it seems like we aren't making progress.
There was a pediatric endocrinologist on the panel of speakers, the only doctor in the group. He referred to multiple daily injections as "conventional" treatment, even though he said that it is better to have a pump. How long will it be before a pump is "conventional?" Why isn't it now, when studies show that people manage their blood sugars better on pumps?
Some parents of diabetic children expressed some frustration that they were having to wait for insurance coverage, and the doctor seemed to feel the delaying tactics were a good thing, that for some reason people should learn to deal with injected insulin before they were allowed to use a pump. He said that it was a "red flag" to him when someone newly diagnosed wanted an insulin pump.
To me, requiring people to get used to injections before teaching them to use a pump is like making them learn to drive a stick shift before they can use an automatic transmission, or maybe more like making them prove they can steer with their knees for a few months before you let them put their hands on the wheel.
I just don't get that.
All in all, I'm glad I went. I got another back-up meter, that may become my main meter, I like it so much, I met some great people, and I got a little bit fired up about the search for a cure.
.
I know, I'm asking all my friends and family to donate to the JDRF, which was founded and is dedicated to the search for a cure for type 1 diabetes. But I wasn't going to get my hopes up that it would happen soon. And I still don't believe a cure is right around the corner.
But one of the local JDRF Outreach Managers, Elizabeth Romero, speaking at the seminar, said something very simple that really hit home for me.
She noted that many of us who have had type 1 diabetes for a long time have become somewhat jaded. We heard when we were diagnosed that a cure was only a few years away, and we've heard that over and over ever since. It's been 36 years for me. That's how long I've been hearing and reading about cures around the corner.
Elizabeth said she understands that. And she said, "But we're not stuck."
She went on to point out many of the things that have come about partly because of the presence of the JDRF, since it was founded 40 years ago.
The essential thing is that there has been a lot of progress. We know more about diabetes now than we have ever known before, and next year we will know more. And the rate of progress is accelerating.
We're not stuck.
We don't have a cure yet, but we're not stuck.
So that's the good part.
The other part of this story is where it seems like we aren't making progress.
There was a pediatric endocrinologist on the panel of speakers, the only doctor in the group. He referred to multiple daily injections as "conventional" treatment, even though he said that it is better to have a pump. How long will it be before a pump is "conventional?" Why isn't it now, when studies show that people manage their blood sugars better on pumps?
Some parents of diabetic children expressed some frustration that they were having to wait for insurance coverage, and the doctor seemed to feel the delaying tactics were a good thing, that for some reason people should learn to deal with injected insulin before they were allowed to use a pump. He said that it was a "red flag" to him when someone newly diagnosed wanted an insulin pump.
To me, requiring people to get used to injections before teaching them to use a pump is like making them learn to drive a stick shift before they can use an automatic transmission, or maybe more like making them prove they can steer with their knees for a few months before you let them put their hands on the wheel.
I just don't get that.
All in all, I'm glad I went. I got another back-up meter, that may become my main meter, I like it so much, I met some great people, and I got a little bit fired up about the search for a cure.
.
Friday, October 1, 2010
Glucomotive 2010 Ragnar Great River Relay
Yes, this relay was run in August, the 20th and 21st. Yes, it is October. That's how slow I am.
Andrew, the driver for van 1, the van I was in, had just injured his ankle on a bike ride. It was so swollen and ugly that we wondered if he could reliably work the accelerator and brakes as he drove us up the Mississippi.
Andrew's ankle later that day, as we waited for van 2 to come into the second van exchange. In the small version of this picture, it looks OK because the swelling has gone down, but if you zoom in, you can see the tiger-striping from the bruise being wrapped with an Ace bandage. But Andrew did fine driving. He kept us guessing about whether he was about to run into things, but he must have known what he was doing.
You get a good look at some of our Costco supplies in this picture, too.
Dave and Daniel relaxing at the first van exchange, I think, before Saci (below) hands off to Pratt from van 2.
Saci in Triabetes gear smiling through his first leg, which was rated "Very Hard."
Daniel, Saci, Jennifer, and Igor after a dip in the Mississippi at the second van exchange.
Daniel by our van in the early morning of the second day, at the fourth van exchange.
The runners from both vans get a rare chance to spend some time together at the fifth van exchange, waiting for Saci to come in. This is counter-clockwise from Daniel, shirtless, Gary in the "Diabetes. Run with it." shirt, Emily in her "Running on Insulin" shirt, Dave, Jennifer, Andrew, and Corinne.
Pratt hauling up a monstrous hill on his last leg.
Dave, Daniel, Igor, Anne, Saci, and Jennifer at the finish, ready for our anchor runner, Corinne, to come in.
Corinne tearing down the pavement toward the finish.
Post-race joy.
Gary, Emily, Mike, Corinne, Pratt, Anne, Igor, Jennifer, Saci, Dave, me, and Daniel.
Not pictured, the awesome drivers, Andrew and John.
Here's a great video Peter put together from stuff we shot during the race.
(Teammates, I left out last names because I wasn't sure if anyone would mind. Am I being silly?)
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You get a good look at some of our Costco supplies in this picture, too.
Not pictured, the awesome drivers, Andrew and John.
Here's a great video Peter put together from stuff we shot during the race.
(Teammates, I left out last names because I wasn't sure if anyone would mind. Am I being silly?)
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