Diabetes in the long run. My personal experience of what it's like to be a type 1 diabetic runner and triathlete.
Thought for the Day
Tuesday, December 21, 2010
Hurt
"I hurt myself today
to see if I still feel"
- Trent Reznor, "Hurt"
Ouch.
Yesterday my legs felt baseball-bat-beaten. They're a little better today.
I ran the Arizona Road Racers Desert Classic 30K on Sunday, which should have been a fun, unique distance. It should be too short to "hit the Wall." But the sad fact is I was in no shape to do this race, and it's been a long time since I've been in shape to do any race.
I have some amazing friends, and some of them also ran this 30K.
The indomitable Melissa Williams was first in her age group, with Lara Pockros just behind her in second and type 1 diabetic Ironman Kevin Burgess following her.
I had kept right with them through the first half of the race, on an out and back course along the Arizona Canal. But I was hurting. Both legs were sore, but at the twelve mile marker, I thought to myself, "It's only a little over a 10K to go. Pick it up!"
As soon as I accelerated a little, my left calf started to cramp. It never knotted up, but it threatened me.
And after about 14 miles, I had no more energy to even think about accelerating.
People started passing me from behind. They weren't speeding up, most of them. It was just that I was slowing down.
I had dropped into that death march that should only happen in a marathon you're under-trained for, and this was just a 30K.
OK. Lesson learned. Again.
I have the Carlsbad Marathon on January 23rd, and plenty of time to train for it. I got one good, long run in on Sunday. I put in a lot of miles at marathon pace. I can be ready to race without hurting myself too bad by January 23rd, right?
.
to see if I still feel"
- Trent Reznor, "Hurt"
Ouch.
Yesterday my legs felt baseball-bat-beaten. They're a little better today.
I ran the Arizona Road Racers Desert Classic 30K on Sunday, which should have been a fun, unique distance. It should be too short to "hit the Wall." But the sad fact is I was in no shape to do this race, and it's been a long time since I've been in shape to do any race.
I have some amazing friends, and some of them also ran this 30K.
The indomitable Melissa Williams was first in her age group, with Lara Pockros just behind her in second and type 1 diabetic Ironman Kevin Burgess following her.
Mel and Lara |
I had kept right with them through the first half of the race, on an out and back course along the Arizona Canal. But I was hurting. Both legs were sore, but at the twelve mile marker, I thought to myself, "It's only a little over a 10K to go. Pick it up!"
As soon as I accelerated a little, my left calf started to cramp. It never knotted up, but it threatened me.
And after about 14 miles, I had no more energy to even think about accelerating.
People started passing me from behind. They weren't speeding up, most of them. It was just that I was slowing down.
I had dropped into that death march that should only happen in a marathon you're under-trained for, and this was just a 30K.
OK. Lesson learned. Again.
I have the Carlsbad Marathon on January 23rd, and plenty of time to train for it. I got one good, long run in on Sunday. I put in a lot of miles at marathon pace. I can be ready to race without hurting myself too bad by January 23rd, right?
.
Monday, December 13, 2010
That's impressive
Back on November 20th, I rode El Tour de Tucson, 109 miles around Tucson, Arizona. I had imagined that I might be able to do it in under 8 hours, but it was just my imagination once again.
There were a few hills, and some headwinds that may as well have been hills, but mostly it was just a long, more or less flat ride. I have got to get in way better shape by the time May 7, 2011, and Ironman St. George rolls around.
Another thing that makes El Tour de Tucson slower than it would otherwise be are a couple of stretches of trail, where you have to dismount your bike and walk it for at least a quarter mile on narrow, dusty (muddy in some other years) trails as you cross a river and a creek bed.
But of course, the most significant thing slowing me down is the fact that I haven't been riding that much. Other than the JDRF ride across Death Valley, I hadn't ridden over 25 miles in months.
So El Tour de Tucson ended up being an all day thing, another nine hour ride. I was a lot more comfortable than in Death Valley. The weather was perfect, overcast most of the day.
The following day Ironman Arizona was going on in Tempe, and several Triabetes athletes, like Julie Sekella, Steve Parker, and Jason Uhl, were out doing it. I didn't get down to the course to cheer them on until about five in the afternoon. (I was laying tile getting the house ready for Thanksgiving company.)
I hadn't eaten yet when I got there, and neither had Jenny Crandell and Christian Chiappe who had been cheerleading all day. So I suggested we make a quick trip to FatBurger, as Peter Nerothin had earlier that day.
Shortly after we ordered, Chrissie Wellington herself walked into the restaurant. She got a standing ovation. She would have been appreciated any time, of course, but this was just a couple hours after she had set a new women's Ironman world record.
Christian and Jenny were wearing their Triabetes jackets, and they asked to get their picture taken with her. She was very cheery and accommodating. I took a picture with Jenny's phone. She assures me it's not my fault it's so blurry.
We thanked Chrissie for her patience, and sat down to continue our meal. I started to send a text to my brother Jon about being in FatBurger with Chrissie Wellington. Chrissie walked over and asked Jenny for a recommendation on the fries, steak fries or skinny fries. Jenny said she had chosen the skinny fries.
It took me a moment to realize I should stop texting and actually pay attention to what was happening in real life.
Chrissie then commented on the burgers we had, and I told her I had bacon, egg, and cheese on mine. (Yes, I had the half pound burger with bacon, egg, and cheese on it. Why go to FatBurger if you're not getting a big, fat, burger?)
She said, "Yes, but you haven't finished yours." Well, I hadn't finished mine as quickly as Jenny and Christian because they had ordered more ordinary burgers, not gut-busters, but before I could explain that, Chrissie said, "But you didn't do an Ironman today, did you?"
I just said, "No, I didn't, but I'll finish this."
Then Jenny said, "He did ride his bike 109 miles yesterday, though."
And Chrissie Wellington, a couple of hours after setting a world Ironman record, looked me in the eye and said, with no hint of sarcasm I could detect, "That's impressive."
I should have said something. I should have said, "Thanks." But all I could do was tip my head to the side, furrow my brow and go,"Ohhhhhh." It was like a groan. I was dumbstruck.
.
There were a few hills, and some headwinds that may as well have been hills, but mostly it was just a long, more or less flat ride. I have got to get in way better shape by the time May 7, 2011, and Ironman St. George rolls around.
Another thing that makes El Tour de Tucson slower than it would otherwise be are a couple of stretches of trail, where you have to dismount your bike and walk it for at least a quarter mile on narrow, dusty (muddy in some other years) trails as you cross a river and a creek bed.
But of course, the most significant thing slowing me down is the fact that I haven't been riding that much. Other than the JDRF ride across Death Valley, I hadn't ridden over 25 miles in months.
So El Tour de Tucson ended up being an all day thing, another nine hour ride. I was a lot more comfortable than in Death Valley. The weather was perfect, overcast most of the day.
The following day Ironman Arizona was going on in Tempe, and several Triabetes athletes, like Julie Sekella, Steve Parker, and Jason Uhl, were out doing it. I didn't get down to the course to cheer them on until about five in the afternoon. (I was laying tile getting the house ready for Thanksgiving company.)
I hadn't eaten yet when I got there, and neither had Jenny Crandell and Christian Chiappe who had been cheerleading all day. So I suggested we make a quick trip to FatBurger, as Peter Nerothin had earlier that day.
Shortly after we ordered, Chrissie Wellington herself walked into the restaurant. She got a standing ovation. She would have been appreciated any time, of course, but this was just a couple hours after she had set a new women's Ironman world record.
Christian and Jenny were wearing their Triabetes jackets, and they asked to get their picture taken with her. She was very cheery and accommodating. I took a picture with Jenny's phone. She assures me it's not my fault it's so blurry.
We thanked Chrissie for her patience, and sat down to continue our meal. I started to send a text to my brother Jon about being in FatBurger with Chrissie Wellington. Chrissie walked over and asked Jenny for a recommendation on the fries, steak fries or skinny fries. Jenny said she had chosen the skinny fries.
It took me a moment to realize I should stop texting and actually pay attention to what was happening in real life.
Chrissie then commented on the burgers we had, and I told her I had bacon, egg, and cheese on mine. (Yes, I had the half pound burger with bacon, egg, and cheese on it. Why go to FatBurger if you're not getting a big, fat, burger?)
She said, "Yes, but you haven't finished yours." Well, I hadn't finished mine as quickly as Jenny and Christian because they had ordered more ordinary burgers, not gut-busters, but before I could explain that, Chrissie said, "But you didn't do an Ironman today, did you?"
I just said, "No, I didn't, but I'll finish this."
Then Jenny said, "He did ride his bike 109 miles yesterday, though."
And Chrissie Wellington, a couple of hours after setting a world Ironman record, looked me in the eye and said, with no hint of sarcasm I could detect, "That's impressive."
I should have said something. I should have said, "Thanks." But all I could do was tip my head to the side, furrow my brow and go,"Ohhhhhh." It was like a groan. I was dumbstruck.
.
Wednesday, November 17, 2010
An Inconvenient Truth
I went to see my endocrinologist last week, and we looked at some unfortunate patterns in my blood sugars. I explained that my basal rates were almost certainly too low since my activity has decreased so much from where it has been in the past. She agreed, and made some suggestions about adjusting the basals upward incrementally. There might be no need to go through basal testing while fasting if I already know I need to increase the basal rates. Later I could fine tune it if necessary.
So I was listening to this and nodding my head, but meanwhile, inside, I'm thinking, "NO! It's not my basal rate that's wrong! It's my body! I need to get more exercise, not compensate for not exercising!"
So it's been a week, and my basal rates are still too low, as I knew they were before I even went to see the endo, but I'm reluctant to make the change. It's like conceding that I'm lazy.
Maybe a century ride down in Tucson on Saturday will kickstart me out of this funk. Maybe.
So I was listening to this and nodding my head, but meanwhile, inside, I'm thinking, "NO! It's not my basal rate that's wrong! It's my body! I need to get more exercise, not compensate for not exercising!"
So it's been a week, and my basal rates are still too low, as I knew they were before I even went to see the endo, but I'm reluctant to make the change. It's like conceding that I'm lazy.
Maybe a century ride down in Tucson on Saturday will kickstart me out of this funk. Maybe.
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. |
.
Tuesday, November 9, 2010
D-blog Day: 6 things
As noted before, November is National Diabetes Month, and November 14 is World Diabetes Day. Today is D-blog Day, started on November 9th 2005 during Diabetes Awareness Month to help unite diabetes bloggers and create awareness about diabetes.
This year’s topic is: 6 things you want people to know about diabetes.
Here are the first six things that came to mind for me:
1. Diabetes is not one disease. Some times people like to say there are two types, "type 1" and "type 2," but those names are inadequate and don't fit a lot of people with diabetes. Doctors fell back to numbered types because they kept picking bad names for the diseases, as in "juvenile onset diabetes" for a disease that could strike at any age, "insulin-dependent diabetes" when dependence on insulin could come about in many totally different ways.
Type 1 and type 2 are still lousy names and there aren't enough of them. There are many different causes and symptoms of different people with both "type 1" and "type 2" diabetes.
The generic nature of these names, type 1 and type 2, expresses a continuing lack of understanding of the diseases.
It's hard to blame the public for not knowing the difference between type 1 and type 2. They sound the same.
Names like insulin-resistant diabetes or autoimmune diabetes, monogenic diabetes, MODY, LADA, would all be good for the public to learn.
2. I would like people to know that the idea that unnecessary medical tests are a huge financial burden on our health care system is a myth. Medical tests are how doctors figure out what you've got.
Did you see the short list of kinds of diabetes above? Do you know that there are more? Do you know that not only does most of the public treat them all the same, but so do many in the medical community?
Do you know that many people who think they have autoimmune diabetes may in fact have monogenic diabetes? Those with autoimmune diabetes require injected insulin, but some with monogenic diabetes could be treated with oral medications, if their doctors knew.
Diagnosis makes a difference.
There is a part of our health care system that takes 30% off the top and provides no health benefit. It is not medical testing. It's the insurance industry.
3. I would like people to know that diabetics suffer disproportionately in the broken health care system of the U.S.
I'm grateful that we have finally done something about affordable health care after all these decades of people struggling, suffering, and dying because of the system we have had in place. I wish more had been possible, but not much can be done politically when billions of dollars are at stake.
4. I would like people to know that my insulin pump does not take care of my diabetes for me. Being diabetic requires a lot of attention, 24/7.
5. I would like people to know that insulin is not a cure, and we really want a cure.
6. I would like people to know that while it's no fun to be diabetic, it's something we can deal with because we have to. It has to be dealt with, but it doesn't have to limit us.
.
This year’s topic is: 6 things you want people to know about diabetes.
Here are the first six things that came to mind for me:
1. Diabetes is not one disease. Some times people like to say there are two types, "type 1" and "type 2," but those names are inadequate and don't fit a lot of people with diabetes. Doctors fell back to numbered types because they kept picking bad names for the diseases, as in "juvenile onset diabetes" for a disease that could strike at any age, "insulin-dependent diabetes" when dependence on insulin could come about in many totally different ways.
Type 1 and type 2 are still lousy names and there aren't enough of them. There are many different causes and symptoms of different people with both "type 1" and "type 2" diabetes.
The generic nature of these names, type 1 and type 2, expresses a continuing lack of understanding of the diseases.
It's hard to blame the public for not knowing the difference between type 1 and type 2. They sound the same.
Names like insulin-resistant diabetes or autoimmune diabetes, monogenic diabetes, MODY, LADA, would all be good for the public to learn.
2. I would like people to know that the idea that unnecessary medical tests are a huge financial burden on our health care system is a myth. Medical tests are how doctors figure out what you've got.
Did you see the short list of kinds of diabetes above? Do you know that there are more? Do you know that not only does most of the public treat them all the same, but so do many in the medical community?
Do you know that many people who think they have autoimmune diabetes may in fact have monogenic diabetes? Those with autoimmune diabetes require injected insulin, but some with monogenic diabetes could be treated with oral medications, if their doctors knew.
Diagnosis makes a difference.
There is a part of our health care system that takes 30% off the top and provides no health benefit. It is not medical testing. It's the insurance industry.
3. I would like people to know that diabetics suffer disproportionately in the broken health care system of the U.S.
I'm grateful that we have finally done something about affordable health care after all these decades of people struggling, suffering, and dying because of the system we have had in place. I wish more had been possible, but not much can be done politically when billions of dollars are at stake.
4. I would like people to know that my insulin pump does not take care of my diabetes for me. Being diabetic requires a lot of attention, 24/7.
5. I would like people to know that insulin is not a cure, and we really want a cure.
6. I would like people to know that while it's no fun to be diabetic, it's something we can deal with because we have to. It has to be dealt with, but it doesn't have to limit us.
.
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 |
Riders lined up ahead of me |
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.
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.
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. |
Furnace Creek is toward the upper right. |
Badwater is down the mountain from here. |
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?)
.
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?)
.
Thursday, September 23, 2010
House on Fire
A certain diabetic marathon runner said some controversial things recently. I would like to be a fan of this guy, but he makes it difficult.
Mike Huckabee, former Governor of Arkansas and candidate for President, compared the provisions in the Affordable Health Care Act which prohibit insurance companies from denying coverage for pre-existing medical conditions to enabling people to purchase home owners' insurance for a house that has already burned down.
As someone with a house on fire, you might have expected Mr. Huckabee to be more sympathetic to people with pre-existing conditions.
I think it's likely Mike Huckabee's viewpoint is influenced by his type 2 diabetes. He was over 300 pounds and a self-confessed foodaholic. He turned his own health around, corrected his diet and started exercising, lost over 100 pounds, and became a marathon runner.
He may have a tendency to feel that sick people are responsible for their own illnesses.
My position is probably influenced by my experience. I was diagnosed with type 1 diabetes at the age of 15. No one is completely certain about the cause, but it certainly wasn't anything I knowingly did.
And I can't just eat right and exercise and have the symptoms go away.
But Huckabee has a point. Insuring that sick people will not continue to be sick is not a profitable proposition.
That seems simple enough.
It was called the Affordable Health Care Act, not the Profitable Health Insurance Act, because we need affordable health care. There is no great public outcry for a more profitable health insurance industry. Health insurance is, after all, extremely profitable.
Huckabee was right about this law being tough on insurance companies. It's another reason we need to get insurance companies out of our health care.
I don't think it's fair to make insurance companies insure houses that have already burned down, but when my house is on fire (As a type 1 diabetic, my house is definitely on fire.) I want to be able to dial 911 and get a fire truck.
Huckabee was speaking at the Values Voter Summit. It's clear that human health and life are not among those values.
.
Mike Huckabee, former Governor of Arkansas and candidate for President, compared the provisions in the Affordable Health Care Act which prohibit insurance companies from denying coverage for pre-existing medical conditions to enabling people to purchase home owners' insurance for a house that has already burned down.
As someone with a house on fire, you might have expected Mr. Huckabee to be more sympathetic to people with pre-existing conditions.
I think it's likely Mike Huckabee's viewpoint is influenced by his type 2 diabetes. He was over 300 pounds and a self-confessed foodaholic. He turned his own health around, corrected his diet and started exercising, lost over 100 pounds, and became a marathon runner.
He may have a tendency to feel that sick people are responsible for their own illnesses.
My position is probably influenced by my experience. I was diagnosed with type 1 diabetes at the age of 15. No one is completely certain about the cause, but it certainly wasn't anything I knowingly did.
And I can't just eat right and exercise and have the symptoms go away.
But Huckabee has a point. Insuring that sick people will not continue to be sick is not a profitable proposition.
That seems simple enough.
It was called the Affordable Health Care Act, not the Profitable Health Insurance Act, because we need affordable health care. There is no great public outcry for a more profitable health insurance industry. Health insurance is, after all, extremely profitable.
Huckabee was right about this law being tough on insurance companies. It's another reason we need to get insurance companies out of our health care.
I don't think it's fair to make insurance companies insure houses that have already burned down, but when my house is on fire (As a type 1 diabetic, my house is definitely on fire.) I want to be able to dial 911 and get a fire truck.
Huckabee was speaking at the Values Voter Summit. It's clear that human health and life are not among those values.
.
Tuesday, September 21, 2010
Support the JDRF
If we know each other, you probably already got this in email, but I'm posting it here just in case.
Hello,
Please bear with me for a minute. After writing this, I thought for a moment I might be getting over-dramatic.
But how can you be over-dramatic when kids are dying?
This October I'll be taking part in the Juvenile Diabetes Research Foundation's Ride to Cure Diabetes in Death Valley along with riders from across the country as we try to help the JDRF reach it's goal of curing type 1 diabetes.
I was diagnosed with type 1 diabetes at the age of 15, 37 years ago. Although I personally would like to see a cure for myself, that's not really why I'm riding for the JDRF.
I've been living with diabetes for a long time. I know I can survive, even be healthy, in spite of it. I'm used to it. But this disease is hard on kids.
In February of this year, a personal hero of mine, Jesse Alswager passed away at the age of thirteen, after 10 years of fighting type 1 diabetes.
When I say fighting, I don't just mean like all of us type 1 diabetics fight, with finger stick blood tests, injections or infusion sets, machines and medicines, counting grams of carbohydrate, thinking through the metabolic effects of every meal, every bit of physical activity, everything....
What I mean is that Jesse was fighting as if he was in a war.
When Jesse was diagnosed at the age of three, his mother, Michelle Alswager, declared war on the disease, and she took her son into battle.
Jesse raised thousands of dollars for the cure, a cure he will never enjoy. Michelle, as a member of the board of directors for several diabetes foundations and an executive at the Juvenile Diabetes Research Foundation, was involved in raising millions.
Jesse met governors, Congress members, First Lady Laura Bush. Politicians loved to be photographed with him and talk about him.
I never met Jesse. I wish I had the chance to thank him. He did a lot for me, and all people with type 1 diabetes.
One of the things that Michelle Alswager did to fight diabetes was to come up with the idea of a type 1 diabetic triathlon team, and a documentary about how they could train for and complete an Ironman.
That was how Triabetes began.
Triabetes has had a profound effect on my life, and I know that it has touched many more diabetics out there.
When I first heard that Jesse had died, it knocked the wind out of me. It was more than a little discouraging personally, to learn that the inspiration for Triabetes had died.
The inspiration had died.
Yeah, that's how I felt.
And it was heart-breaking to think that Michelle Alswager, who had worked to spread hope to people like her son, people like me, suffering from type 1 diabetes, had lost her son.
For several hours this was a hope-crushing thought for me.
But now I've decided that it's part of a war. I've been around for the war, but mostly on the sidelines. I have not yet begun to fight.
I have to take to the battlefield now.
I'm riding across Death Valley in honor of Jesse Alswager, and to help the children who now have this disease or will have it in the future.
Also riding will be Michelle Alswager, in memory of her son, and Bob and Jen Nicholson, who lost their 14 year old son Trent to type 1 diabetes in March of this year.
Please go to this page to donate to the Juvenile Diabetes Research Foundation:
http://ride.jdrf.org/index.cfm?fuseaction=rideCentral.personalpage&riderID=9801
Thank you,
Jerry
PS:
See this video to learn more about Jesse:
http://www.youtube.com/watch?v=L8yNxqWoasg
Or here:
http://www.youtube.com/watch?v=QPDS2V1AF9w
Learn more about Michelle Alswager here:
http://www.dlife.com/dlifeTv/v587287464001-michelle-alswager.html
And more about Triabetes here:
http://www.dlife.com/dlifeTv/v14985633001-Triabetes.html
Memorials to Jesse:
http://www.caringbridge.org/visit/jessealswager
Memorials to Trent:
http://www.tributes.com/show/Trent-Nicholson-88196543
PPS:
Many employers do charity matching gifts. If you decide to give to the JDRF, please find out if your company will match your gift, and make your contribution count twice as much.
If you want to make a contribution in honor of or in memory of someone, whether they have diabetes or for any other reason, please state that in the "Message for Rider" box in the online contribution form. I will put that person's name on my bib number to wear while I ride across Death Valley. Thank you for the opportunity.
.
Hello,
Please bear with me for a minute. After writing this, I thought for a moment I might be getting over-dramatic.
But how can you be over-dramatic when kids are dying?
This October I'll be taking part in the Juvenile Diabetes Research Foundation's Ride to Cure Diabetes in Death Valley along with riders from across the country as we try to help the JDRF reach it's goal of curing type 1 diabetes.
I was diagnosed with type 1 diabetes at the age of 15, 37 years ago. Although I personally would like to see a cure for myself, that's not really why I'm riding for the JDRF.
I've been living with diabetes for a long time. I know I can survive, even be healthy, in spite of it. I'm used to it. But this disease is hard on kids.
In February of this year, a personal hero of mine, Jesse Alswager passed away at the age of thirteen, after 10 years of fighting type 1 diabetes.
When I say fighting, I don't just mean like all of us type 1 diabetics fight, with finger stick blood tests, injections or infusion sets, machines and medicines, counting grams of carbohydrate, thinking through the metabolic effects of every meal, every bit of physical activity, everything....
What I mean is that Jesse was fighting as if he was in a war.
When Jesse was diagnosed at the age of three, his mother, Michelle Alswager, declared war on the disease, and she took her son into battle.
Jesse raised thousands of dollars for the cure, a cure he will never enjoy. Michelle, as a member of the board of directors for several diabetes foundations and an executive at the Juvenile Diabetes Research Foundation, was involved in raising millions.
Jesse met governors, Congress members, First Lady Laura Bush. Politicians loved to be photographed with him and talk about him.
I never met Jesse. I wish I had the chance to thank him. He did a lot for me, and all people with type 1 diabetes.
One of the things that Michelle Alswager did to fight diabetes was to come up with the idea of a type 1 diabetic triathlon team, and a documentary about how they could train for and complete an Ironman.
That was how Triabetes began.
Triabetes has had a profound effect on my life, and I know that it has touched many more diabetics out there.
When I first heard that Jesse had died, it knocked the wind out of me. It was more than a little discouraging personally, to learn that the inspiration for Triabetes had died.
The inspiration had died.
Yeah, that's how I felt.
And it was heart-breaking to think that Michelle Alswager, who had worked to spread hope to people like her son, people like me, suffering from type 1 diabetes, had lost her son.
For several hours this was a hope-crushing thought for me.
But now I've decided that it's part of a war. I've been around for the war, but mostly on the sidelines. I have not yet begun to fight.
I have to take to the battlefield now.
I'm riding across Death Valley in honor of Jesse Alswager, and to help the children who now have this disease or will have it in the future.
Also riding will be Michelle Alswager, in memory of her son, and Bob and Jen Nicholson, who lost their 14 year old son Trent to type 1 diabetes in March of this year.
Please go to this page to donate to the Juvenile Diabetes Research Foundation:
http://ride.jdrf.org/index.cfm?fuseaction=rideCentral.personalpage&riderID=9801
Thank you,
Jerry
PS:
See this video to learn more about Jesse:
http://www.youtube.com/watch?v=L8yNxqWoasg
Or here:
http://www.youtube.com/watch?v=QPDS2V1AF9w
Learn more about Michelle Alswager here:
http://www.dlife.com/dlifeTv/v587287464001-michelle-alswager.html
And more about Triabetes here:
http://www.dlife.com/dlifeTv/v14985633001-Triabetes.html
Memorials to Jesse:
http://www.caringbridge.org/visit/jessealswager
Memorials to Trent:
http://www.tributes.com/show/Trent-Nicholson-88196543
PPS:
Many employers do charity matching gifts. If you decide to give to the JDRF, please find out if your company will match your gift, and make your contribution count twice as much.
If you want to make a contribution in honor of or in memory of someone, whether they have diabetes or for any other reason, please state that in the "Message for Rider" box in the online contribution form. I will put that person's name on my bib number to wear while I ride across Death Valley. Thank you for the opportunity.
.
Monday, September 13, 2010
Diabetes Meme
This is a link in a chain of blogs started by Kerri Sparling of Six Until Me.
What type of diabetes do you have:
I have the bad kind. No, seriously I've got type 1 diabetes.
This question can rightly be seen as either vitally important or totally irrelevant.
Type 1 and type 2 diabetes are both terrible diseases that have some things in common but are also extremely different from each other.
When we lump them together it's a little like lumping together muscular dystrophy and multiple sclerosis.
When were you diagnosed:
I don't know the exact date, but it was in the fall of 1974.
What's your current blood sugar:
119.
What kind of meter do you use:
OneTouch UltraMini.
How many times a day do you test your blood sugar:
Usually 8 to 10 times, but depending on things that might be going on, like some kind of problem with an infusion site or some athletic activity, it could be over 15 times.
What's a "high" number for you:
It depends on context, insulin on board, if I'm about to do something like go for a run...
I will do a correction bolus for 130 if I haven't had a bolus recently, but shortly after a meal and a bolus, I will only think about whether or not to correct if I'm over 190.
Sometimes I go by both the number on the meter and by "feel."
What's do you consider "low":
This also depends on context, but I don't like to be under 90 ever. I wouldn't call it a "low blood sugar" or "hypoglycemia" unless I was under 75, but I would eat something.
What's your favorite low blood sugar reaction treater:
I love having an excuse to slurp down a juice box, but I always carry glucose tablets because they're so convenient, 40 grams of carbohydrate in a tube of ten tablets.
Describe your dream endo:
She would look like Halle Berry and be able to cure type 1 diabetes. Maybe it is Halle Berry.
I want my endo to listen to me and respect my opinions, and to stay up on the treatments even more than I do. Someone who understands my life would be good. A type 1 diabetic marathon running endocrinologist would be good.
What's your biggest diabetes achievement:
I'm not even sure what a "diabetes achievement" is. If there is an achievement, is it a diabetic achievement just because I have diabetes?
I got on the cover of Diabetes Forecast once.
I once ran 10 marathon or longer races in one year. I know faster type 1 diabetics. I know at least one type 1 diabetic who has run more marathons than I have. But I'm not sure whether there is another type 1 diabetic who has run 10 marathons and ultra marathons in a year. (8 marathons, 2 50Ks.)
What's your biggest diabetes-related fear:
Not waking up tomorrow morning.
Who's on your support team:
InsulInDependence, Triabetes, Glucomotive, DESA, Team Diabetes and Coach Dave, the DOC, Sue, my kids, my brothers, my parents, Penny, Rusty, East Valley Runners, Sole Sports Running, any friends not already mentioned...
Oh yeah, and my endo.
Do you think there will be a cure in your lifetime:
No, I don't think so. As many others have said, I've been told that a cure is only a few years away ever since I was diagnosed, in my case, 36 years ago.
I'm planning to get a Medic Alert tattoo, something I won't need if I'm ever cured.
But that's just what I think, and it's not an excuse for not working for the cure.
What is a "cure" to you:
A cure means not requiring any medicine or devices to keep my blood sugar in a normal range. It means being like I was before I had diabetes.
Oh, and this.
The most annoying thing people say to you about your diabetes is:
I'm not easily annoyed. It doesn't happen often, but the most annoying thing is when someone who doesn't know what it's like starts to talk about how easy the disease is to manage with all of the technology, like pumps and meters.
Oh, yeah. The most annoying thing is when insurance companies want to tell you that some technology that's been available for over a dozen years is "experimental," or that you want too many test strips, or insulin, or that you can't have this because your blood sugar management isn't good enough, or that because your blood sugar management isn't bad enough.
Basically, anything an insurance company says about your health care, any excuse for a short-sighted, unhealthy decision, is the most annoying thing people say.
And anything that Dr. Oz says.
What is the most common misconception about diabetes:
It's hard to pick one, but it's probably still the idea that there is only one kind of diabetes, that it's all pretty much the same thing.
If you could say one thing to your pancreas, what would it be:
I don't blame my pancreas. I blame my immune system. The pancreas is the victim in all this. I would ask my pancreas to keep fighting, but I would tell my immune system to wise up.
.
What type of diabetes do you have:
I have the bad kind. No, seriously I've got type 1 diabetes.
This question can rightly be seen as either vitally important or totally irrelevant.
Type 1 and type 2 diabetes are both terrible diseases that have some things in common but are also extremely different from each other.
When we lump them together it's a little like lumping together muscular dystrophy and multiple sclerosis.
When were you diagnosed:
I don't know the exact date, but it was in the fall of 1974.
What's your current blood sugar:
119.
What kind of meter do you use:
OneTouch UltraMini.
How many times a day do you test your blood sugar:
Usually 8 to 10 times, but depending on things that might be going on, like some kind of problem with an infusion site or some athletic activity, it could be over 15 times.
What's a "high" number for you:
It depends on context, insulin on board, if I'm about to do something like go for a run...
I will do a correction bolus for 130 if I haven't had a bolus recently, but shortly after a meal and a bolus, I will only think about whether or not to correct if I'm over 190.
Sometimes I go by both the number on the meter and by "feel."
What's do you consider "low":
This also depends on context, but I don't like to be under 90 ever. I wouldn't call it a "low blood sugar" or "hypoglycemia" unless I was under 75, but I would eat something.
What's your favorite low blood sugar reaction treater:
I love having an excuse to slurp down a juice box, but I always carry glucose tablets because they're so convenient, 40 grams of carbohydrate in a tube of ten tablets.
Describe your dream endo:
She would look like Halle Berry and be able to cure type 1 diabetes. Maybe it is Halle Berry.
I want my endo to listen to me and respect my opinions, and to stay up on the treatments even more than I do. Someone who understands my life would be good. A type 1 diabetic marathon running endocrinologist would be good.
What's your biggest diabetes achievement:
I'm not even sure what a "diabetes achievement" is. If there is an achievement, is it a diabetic achievement just because I have diabetes?
I got on the cover of Diabetes Forecast once.
I once ran 10 marathon or longer races in one year. I know faster type 1 diabetics. I know at least one type 1 diabetic who has run more marathons than I have. But I'm not sure whether there is another type 1 diabetic who has run 10 marathons and ultra marathons in a year. (8 marathons, 2 50Ks.)
What's your biggest diabetes-related fear:
Not waking up tomorrow morning.
Who's on your support team:
InsulInDependence, Triabetes, Glucomotive, DESA, Team Diabetes and Coach Dave, the DOC, Sue, my kids, my brothers, my parents, Penny, Rusty, East Valley Runners, Sole Sports Running, any friends not already mentioned...
Oh yeah, and my endo.
Do you think there will be a cure in your lifetime:
No, I don't think so. As many others have said, I've been told that a cure is only a few years away ever since I was diagnosed, in my case, 36 years ago.
I'm planning to get a Medic Alert tattoo, something I won't need if I'm ever cured.
But that's just what I think, and it's not an excuse for not working for the cure.
What is a "cure" to you:
A cure means not requiring any medicine or devices to keep my blood sugar in a normal range. It means being like I was before I had diabetes.
Oh, and this.
The most annoying thing people say to you about your diabetes is:
I'm not easily annoyed. It doesn't happen often, but the most annoying thing is when someone who doesn't know what it's like starts to talk about how easy the disease is to manage with all of the technology, like pumps and meters.
Oh, yeah. The most annoying thing is when insurance companies want to tell you that some technology that's been available for over a dozen years is "experimental," or that you want too many test strips, or insulin, or that you can't have this because your blood sugar management isn't good enough, or that because your blood sugar management isn't bad enough.
Basically, anything an insurance company says about your health care, any excuse for a short-sighted, unhealthy decision, is the most annoying thing people say.
And anything that Dr. Oz says.
What is the most common misconception about diabetes:
It's hard to pick one, but it's probably still the idea that there is only one kind of diabetes, that it's all pretty much the same thing.
If you could say one thing to your pancreas, what would it be:
I don't blame my pancreas. I blame my immune system. The pancreas is the victim in all this. I would ask my pancreas to keep fighting, but I would tell my immune system to wise up.
.
Friday, September 10, 2010
Coach Milam
I was just informed that Coach Rick Milam, who was my high school cross country coach, recently passed away due to a series of events. He had been fighting cancer for 8 months, and it had greatly weakened him. While driving, he apparently had a heart attack and subsequently an accident. He had another heart attack in the hospital and passed away.
I hadn't seen Coach Milam since a race in the '80s where he was race director. Although he was very busy that day, I was able to get over to see him before the race. He shook my hand and seemed to be glad to see me and curious about what I had been up to.
After coaching successfully at the high school level, Rick Milam went on to work in the field of Sports Psychology. He worked with many college and professional teams.
He was a fixture in Bay Area Track and Field, organizing meets and races, and working as an official at everything he could fit into his schedule.
He was a great coach. He worked us hard, but no one disliked him. We had fun running for him.
Coach Milam will always be connected in my mind to the onset of my type 1 diabetes. It was during my second year on the cross country team that I started to show serious symptoms. I'm sure the coach was wondering what was going on with me as I slowed down and seemed to get in worse shape rather than better as training continued.
I will always be thankful to Coach Milam that he never hesitated to encourage me to get back on the team and continue to run when I got out of a week in the hospital. Who knows how I could have turned out if he had a different, more cautious attitude.
A memorial service for Coach Rick Milam will be held in the Los Gatos gym on Sunday, Sept. 19 from 2-4 p.m.
.
I hadn't seen Coach Milam since a race in the '80s where he was race director. Although he was very busy that day, I was able to get over to see him before the race. He shook my hand and seemed to be glad to see me and curious about what I had been up to.
After coaching successfully at the high school level, Rick Milam went on to work in the field of Sports Psychology. He worked with many college and professional teams.
He was a fixture in Bay Area Track and Field, organizing meets and races, and working as an official at everything he could fit into his schedule.
He was a great coach. He worked us hard, but no one disliked him. We had fun running for him.
Coach Milam will always be connected in my mind to the onset of my type 1 diabetes. It was during my second year on the cross country team that I started to show serious symptoms. I'm sure the coach was wondering what was going on with me as I slowed down and seemed to get in worse shape rather than better as training continued.
I will always be thankful to Coach Milam that he never hesitated to encourage me to get back on the team and continue to run when I got out of a week in the hospital. Who knows how I could have turned out if he had a different, more cautious attitude.
A memorial service for Coach Rick Milam will be held in the Los Gatos gym on Sunday, Sept. 19 from 2-4 p.m.
.
Thursday, September 2, 2010
How Tough is Ironman St. George?
Holy crap!
That's the phrase that leapt to mind when I saw this analysis from RunTri.com of the easiest/hardest Ironman courses, based on average completion times:
Easiest/Hardest Ironman Course
Overall, St. George has the longest average finish time:
Finish Times
St. George is ahead by a wide margin, half an hour longer than the next longest time, over two hours longer than the fastest ones.
I can take some small degree of solace in the fact that St. George has only one year of results, so this may be an anomaly.
Swim, St. George is tied for 3rd slowest:
Swim Times
There is about 20 minutes between the slowest and fastest.
You would think that water is water and there couldn't be that much difference. The guy doing this analysis says that things like the crowding/tightness of the course, chop/roughness of the water, and currents matter. Temperature matters to me.
The St. George course is tight at the start, and the water is cold. The water didn't look choppy to me the first and only time the race was held, but according to some reports it gets windy sometimes and it could be worse in 2011.
Bike, St. George is tied for slowest:
Bike Times
There is about an hour and twenty minutes differential here between the slowest and fastest courses. The three slowest are almost the same, and about 20 minutes slower than the next course on the list.
Run, St. George is 6th slowest out of the 25 races analyzed:
Marathon Times
Having seen the run course, this is surprising. That's a tough marathon. I would have guessed it was in the toughest 20%.
St. George isn't just a tough course, it is the toughest.
So what does that mean for me?
I can't just train to be an Ironman. I have to train to be one tough Ironman. I can't train with the thought that I just need to be good enough to make it through this. I have to train to be a serious triathlete. To do all right at St. George, I have to be ready to excel on any other course.
Good enough isn't good enough.
I'm pretty scared.
Holy crap.
.
That's the phrase that leapt to mind when I saw this analysis from RunTri.com of the easiest/hardest Ironman courses, based on average completion times:
Easiest/Hardest Ironman Course
Overall, St. George has the longest average finish time:
Finish Times
St. George is ahead by a wide margin, half an hour longer than the next longest time, over two hours longer than the fastest ones.
I can take some small degree of solace in the fact that St. George has only one year of results, so this may be an anomaly.
Swim, St. George is tied for 3rd slowest:
Swim Times
There is about 20 minutes between the slowest and fastest.
You would think that water is water and there couldn't be that much difference. The guy doing this analysis says that things like the crowding/tightness of the course, chop/roughness of the water, and currents matter. Temperature matters to me.
The St. George course is tight at the start, and the water is cold. The water didn't look choppy to me the first and only time the race was held, but according to some reports it gets windy sometimes and it could be worse in 2011.
Bike, St. George is tied for slowest:
Bike Times
There is about an hour and twenty minutes differential here between the slowest and fastest courses. The three slowest are almost the same, and about 20 minutes slower than the next course on the list.
Run, St. George is 6th slowest out of the 25 races analyzed:
Marathon Times
Having seen the run course, this is surprising. That's a tough marathon. I would have guessed it was in the toughest 20%.
St. George isn't just a tough course, it is the toughest.
So what does that mean for me?
I can't just train to be an Ironman. I have to train to be one tough Ironman. I can't train with the thought that I just need to be good enough to make it through this. I have to train to be a serious triathlete. To do all right at St. George, I have to be ready to excel on any other course.
Good enough isn't good enough.
I'm pretty scared.
Holy crap.
.
Wednesday, September 1, 2010
Happy Birthday, Peter
Years ago, I didn't know anyone else who was trying to stay athletic in spite of having type 1 diabetes. I met a few other type 1 diabetics, and I heard about athletes with type 1 diabetes, but I had no real connection with anyone like me.
Eventually, I became acquainted with other diabetic athletes via the internet. First I sought out the email addresses of people like Bill King. Then I joined DESA and other groups. That's how I made a connection with InsulInDependence and became a charter member.
For about a year I exchanged email with Peter before we finally met for lunch the day before the Rock 'N' Roll Arizona Marathon in 2008.
That's when I entered the third stage of my life as a diabetic athlete. That's when I became a part of a real community of diabetic athletes.
I was 48 years old, sitting across the table from this kid, from the same generation as my children, and thinking about the life he had already led, from hitch-hiking across Europe, to visiting Base Camp on Everest, to multiple Ironman finishes. I was amazed.
And I didn't know Peter well enough to be appropriately impressed.
I have met a lot of amazing and special people through Peter and InsulInDependence, but Peter is the most amazing for this reason.
He shows others, each of us, how special we all are. It seems to be his mission.
We are all better for having met him.
Happy birthday, Peter!
.
Tuesday, August 17, 2010
Friday, August 13, 2010
Symptoms of Hypoglycemia
What are the symptoms of hypoglycemia?
This is what the American Diabetes Association says:
These are good guidelines, but I've been thinking about what hypoglycemia means to me. Here are some more personal experiences of the "symptoms of hypoglycemia."
Being quite certain, as you watch "Angels in the Outfield" on television with your wife and kids, that the angels in the movie are speaking directly to you, and the whole movie was created to send you personally a message that you must change your ways, touching you so deeply that you begin crying uncontrollably so that at first you seem funny but gradually more and more worrisome to your wife and perplexing to your children.
Noticing on the way to work that you can't remember driving the last few miles and realizing it's more than just an ordinary commute driver's trance because you're starting to feel those waves of the universe going in and out of focus, and knowing you need to get off the freeway and stop but taking an exit that turns out to be a truck weigh station that you cruise through way too fast on your way to a real exit where you pull onto the shoulder and fumble some glucose tablets out of your pocket and into your mouth.
Knowing, without a doubt, as you watch a Twilight Zone marathon, that you are being abducted to a duplicate dimension while someone else takes your place in the real world, while simultaneously knowing that you are just experiencing a hypoglycemic event, but also knowing that your low is part of the alternate universe you are being trapped in.
Feeling exhilarated and light-footed running down the beach with two of your brothers, suddenly noticing twinges beginning in your hamstrings, and knowing what it is, but thinking maybe you can just make it back to the car, until the hamstrings just fold up under you, your legs unable to bear any weight, and your abs beginning to convulse, folding you, clenching and unclenching your entire body, your neck, your jaws, seemingly the whole world, tight, loose, tight, loose, whim, wham, and you're laughing, terrified, but laughing uncontrollably as you jerk uncontrollably, because it's so damn funny, to be carried, in seizures, off the beach, by your brothers, who are simply terrified, unable to see how funny it is.
Coming to groggy consciousness staring straight up into a bright, white light in a white panelled ceiling in a hospital hallway with your back flat on a gurney, arms and legs strapped firmly to the rails, head aching, muscles sore, remembering only reeling, swirling glimpses of how you got here, somehow, from sleeping in your own bed, learning only later that you fought for several minutes with three EMTs you can't even remember seeing while they were trying to save your life.
Then there is that other symptom of hypoglycemia, going to bed and not getting up, ever again, like a nurse in Tucson a few years ago, or a teenager recently in Southern California, or others I've heard about over the years. It happens. Insulin is a killer.
That's one major reason that, even though I am surviving pretty well with diabetes, I'm still hoping for a cure.
.
This is what the American Diabetes Association says:
Symptoms of hypoglycemia include the following:
* Shakiness
* Dizziness
* Sweating
* Hunger
* Headache
* Pale skin color
* Sudden moodiness or behavior changes, such as crying for no apparent reason
* Clumsy or jerky movements
* Seizure
* Difficulty paying attention, or confusion
* Tingling sensations around the mouth
These are good guidelines, but I've been thinking about what hypoglycemia means to me. Here are some more personal experiences of the "symptoms of hypoglycemia."
Being quite certain, as you watch "Angels in the Outfield" on television with your wife and kids, that the angels in the movie are speaking directly to you, and the whole movie was created to send you personally a message that you must change your ways, touching you so deeply that you begin crying uncontrollably so that at first you seem funny but gradually more and more worrisome to your wife and perplexing to your children.
Noticing on the way to work that you can't remember driving the last few miles and realizing it's more than just an ordinary commute driver's trance because you're starting to feel those waves of the universe going in and out of focus, and knowing you need to get off the freeway and stop but taking an exit that turns out to be a truck weigh station that you cruise through way too fast on your way to a real exit where you pull onto the shoulder and fumble some glucose tablets out of your pocket and into your mouth.
Knowing, without a doubt, as you watch a Twilight Zone marathon, that you are being abducted to a duplicate dimension while someone else takes your place in the real world, while simultaneously knowing that you are just experiencing a hypoglycemic event, but also knowing that your low is part of the alternate universe you are being trapped in.
Feeling exhilarated and light-footed running down the beach with two of your brothers, suddenly noticing twinges beginning in your hamstrings, and knowing what it is, but thinking maybe you can just make it back to the car, until the hamstrings just fold up under you, your legs unable to bear any weight, and your abs beginning to convulse, folding you, clenching and unclenching your entire body, your neck, your jaws, seemingly the whole world, tight, loose, tight, loose, whim, wham, and you're laughing, terrified, but laughing uncontrollably as you jerk uncontrollably, because it's so damn funny, to be carried, in seizures, off the beach, by your brothers, who are simply terrified, unable to see how funny it is.
Coming to groggy consciousness staring straight up into a bright, white light in a white panelled ceiling in a hospital hallway with your back flat on a gurney, arms and legs strapped firmly to the rails, head aching, muscles sore, remembering only reeling, swirling glimpses of how you got here, somehow, from sleeping in your own bed, learning only later that you fought for several minutes with three EMTs you can't even remember seeing while they were trying to save your life.
Then there is that other symptom of hypoglycemia, going to bed and not getting up, ever again, like a nurse in Tucson a few years ago, or a teenager recently in Southern California, or others I've heard about over the years. It happens. Insulin is a killer.
That's one major reason that, even though I am surviving pretty well with diabetes, I'm still hoping for a cure.
.
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