Amy wrote another great blog post.

No shock there right?

Well two actually this one and this other one, not to mention the rest of her blog.

So anyway one of the comments on this other one struck me as particularly interesting. I responded by didn't bother to use actual English. In my defense, I was too excited by the whole conversation.

It was about data.

Oh my lord I am in getting excited about data, I am in fact a total geek! Possibly a Trekkie but then I didn't capitalize 'data.'

Anyway I encourage y'all to go read Amy's latest design challenge. For those of you who are not product designers and who understand databases and stuff (and so are even more of a geek than me, but I mean that in a nice way, honest) maybe you can design data standards for diabetes devices the designers design. After all iPods look cool and work intuitively.

After reading the good stuff at Amy's, my prior blog entries on the subject are:

...and I would like a side order of Holy Grail while I am at it too

Swimming in the Data Stream Looking for the UN.

From the New Wire - Treatment of Diabetic Eye Disease

A JDRF collaboration between Johns Hopkins researchers and Genentech has shown that a drug for the treatment of diabetic eye disease has performed better in clinical trials than the current standard treatment using laser surgery.

http://www.sciencedaily.com/releases/2008/04/080429130924.htm

Air in the Tires

I stopped to get some air for the car’s tires. Proper inflation saves fuel and handles better. Air cost money these days and I needed to break a bill to feed the air machine. Walking out of gas station office / mini market I heard someone call out. I looked up to see our pump rep Natalie.

Natalie was the subject of my first YDMV blog entry. She is nuts, psycho. I mean that in the very nicest way. She was at the gas pump, like this lady needs to be around more pumps. She wears two, one for insulin one for symlin.

She is THAT serious about diabetes care. I trust by now regular readers of YDMV know that I make a big distinction between serious and solemn. She ain't solemn at all. She is an evangelist of good diabetes care. Just seeing her makes you want to do better, not by a guilt trip, not an second pump, she is simply an inspiration. She cares diabetes care.

We chatted about the kids. Of course she asked how they were doing. Great! I told her about Connor's progress towards autonomy. She was truely happy to hear it.

Naturally I asked about what is coming from R&D. Something will be coming but she can’t talk out of school. Fair enough, I still have to ask. Our pumps are due for replacement in the next year or so, that is plenty of time for innovation and plenty of time to be making choices with care.

Taking time isn’t my nature. It clearly isn’t her’s either. Seriously who else wears a symlin pump? She is wearing a Dexcom 7 but ordered a Navigator to see how well it works. I mean you have to love this woman. She lives the edge of technology and knows it is about psychology!

She is a big part of why we use Animas pumps. Her passion and humor are as infectious now as they were when we had her over to first talk about the pump. She is an inspiration. Diabetes care takes a dose of inspiration now and again.

Diabetes care is a day in day out process. It is both tediously dull and at times piercingly immediate. Good care takes inspiration. Natalie is that. While we may wish for magic changes to our daily routines, inspiration to do it better makes a difference now.

Yeah I want an integrated CGM (with insurance coverage), faster insulin and longer lasting sets. They would all help A1Cs down the road. Staying positive and tinkering with what we have will improve A1C next visit.


Air in the tires, wind in the sails.

LY/MI Natalie

From The News Wire: Dumbass Headlines

Anyone who looks at diabetes news is seeing a lot of headlines like:

No evidence for diabetes self-monitoring

Blood glucose self-monitoring not cost-effective, report says

Self-monitoring kits could cause 'harm' to diabetics

Oh Joy!

Yeah it is about type II. Everyone should get ready to answer whisper down the lane comments, from marginally informed, well meaning folks, who glance at a head line and try to help. Seriously they are not trying to stress us out.

It just works that way.

My dad and sister are both type II. My dad is bearing down on his 90th birthday. He doesn’t test and doesn’t have a clue what his A1C is and that seems to be working just fine for him. My sister tests occasionally and does know her A1C. It’s fairly good. That seems to be working just fine for her.

We use more test strips in a day, for one kid, than they combined use in a year. YDMV.

Media literacy includes understanding that the media, as often as not, doesn’t know what it talking about. We need to hold that truth to be self evident. It shouldn’t be grounds for intramural grudges between types of diabetics.

Now I still think T1 and T2 should have different names but no body is making me king so what I think - don’t count. But for a chuckle go read this and let this latest dumbass reporting roll off your back.

Peaceably to Assemble

…the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

So I peacefully assembled, with some 35,000 others Friday night. Right out in front of Independence Hall. Smack between it and the Constitution Center, right next to the Liberty Bell on a side walk on 5th Street. Sacred soil to me.

I was there to see a presidential candidate. There were so many of us assembled that I was too far away to see much of anything other than a lot of other peacefully assembled folks. A heck of a lot of'm. That was actually cool in its own way. So I didn't "see" the candidate.

I did have a nice view of the Constitution Center. The preamble is carved into its stone facade. Even from a block away I could read the words; We the people…

So in this huge crowd about all I could do was to talk with a few of the people on our little piece of side walk. 35,000 people, a dozen to talk with.

Still it was moving to be there in such a large crowd and having conversations with a small group. I think this assembly would have made the guys who brought the constitution to life, proud. I doubt it would have surprised them. I think they expected us to go to political events, hang out and talk.

I was a good speech. Strong on Independence and Health Care if not particularly specific. That’s fine. Our 16 year old is into this election. That a good thing. She had a great time. That was the point. Go forth and become a good Citizen my daughter. You make me proud.

I don’t much care what peoples' politics are, heck I am not all that sure what mine are. I have called myself a Schizopublicrat. I doubt that helps define me much. I am however thrilled that people are participating, that primary turn outs are up and that people care.

I hope my fellow Type 1 families will petition the Government for a redress of grievances, what ever they may be. Delaney and I did. I am not so sure we had much of a grievance to redress.

We were more interested in being seen than aggrieved. If we had a grievance it was that type 1 kids can be invisible. In a lot of ways that is what they want – to be no different.

Sadly they can’t be no different. Maybe if we get to see our leaders and they see us, even as faces in the crowd, there will fewer grievances for us to peacefully assemble about.

So since the 18th amendment was repealed, here's a toast to the First.

Our Constitution at its finest.

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

It's 3:00 am…

Somewhere in the world, there is a blood check that needs to be done. Who do you want checking that blood?

Can I call Hillary to come over? Apparently if her ads are to be believed, she is all motivated to be working, up, wearing a suit and taking phone calls at 3:00 am anyway. I mean as long as she is up, I would rather sleep.

I am guessing not.

Non D folks wonder why we do a 3:00 am check. Doesn’t everyone like tripping over toys in the dark?

OK I am being whiny; I don’t trip over toys anymore. No, my daughter doesn’t always put her stuff away. I solved the tripping in the dark by stringing Christmas tree light around the ceiling of her room. They throw off enough light to navigate and test at 3:00 am. Well navigation and she likes the look.

More she likes the look. She’s my baby girl. I am wrapped around her finger. She wants lights, she can have lights. Seeing in the middle of the night is an unintended consequence.

Where was I? Oh yeah… It’s 3:00 am. Doing stuff at 3:00 am is routine in a type 1 household.

Some type 1 families check every night. We don’t. We check to test basals. The clue it is time to check is when the 6:30 am blood numbers start spiking.

I have tried to explain basal setting to the uninitiated. Sadly that is too much information for anyone who doesn’t get YDMV to start with. Those who do get it don’t need an explanation. They probably get up at 3:00 am too.

The real answerer for why I do a 3:00 am check is: So I can sleep the second half of the night.

Once it gets into my head there maybe a blood issue, I can’t sleep. The 3:00 am check isn’t so much an interruption of the nights sleep as it is an attempt to salvage the second half of the night’s rest.

In all honestly not doing a 3:00 am check is not my preference. I would be just as happy with no diabetes and no late night blood checks. That ain’t happenin’.

Next to that, a CGM tracking numbers would be great. Unfortunately that isn’t covered by insurance. It would be a wonderful tool for tracking trends to make basal changes but parents getting sleep and well adjusted basal programs are of no concern to an insurance company.

I wonder if there is anyone to call about that, at 3:00 am.

From the News Wire: Way Early Detection

Researchers in Milwaukee may be on to a path for earlier detection and treatment of T1. They have figured out a means of identifying T1 with an early blood test. Like before symptoms.

Maybe this with some of the approaches being studies to prolong beta cell production in the honeymoon could significantly put off what we now see as diagnosis.

MILWAUKEE, April 16 --
Researchers at Children's Research Institute, located in Milwaukee, recently made significant discoveries in juvenile diabetes diagnosis. Led by Martin Hessner, PhD, associate professor, Medical College of Wisconsin, the research team applied a new approach, finding that type 1 diabetes patients during the honeymoon phase create a unique genomic fingerprint. The research team used a new type of blood test that identifies inflammation associated with type 1 diabetes though a unique genomic fingerprint. Remarkably, this fingerprint is evident years prior to disease onset. This discovery offers insight into the pathways responsible for type 1 diabetes. This fingerprint will be useful in identifying at-risk children earlier in the disease process. This offers hope for earlier treatment and even delay or prevention of full-blown diabetes. The Journal of Immunology recently published this research.

http://www.sunherald.com/447/story/495478.html

From the New Wire - Impressive Sounding Science

New Nanotube Sensor Can Continuously Monitor Minute Amounts Of Insulin

It sure sounds high tech. I was up until 3:00 am testing basal rates and as a result I have no clue what this article may mean. If you figure it out let me know. For now I am thinking Monty Python "Machine that Goes Ping"

Delaney's basal's are finally coming into reasonable fluctuations. I hadn't checked Connor in ages and seeing how I wasn't sleeping I figured I would go check him too.

I had a hard time finding a kit. But after digging around for a while I found all the necessary parts and poked a hole for blood. At this point I noticed the meter wasn't coming on.

Great dead batteries.

So I found a few AAA cells and fired it up. The meter thought it was March 23. Hmmm, me thinks these batteries have been dead for a while. Wonder how he tests? (He claims there are other meteres up there. Can't prove it by me but I am only so willing to poke around in the boys room. I think there could be things living in there and I don't mean the teen age boys, more like their soxs.)

So anyway where was I?

Oh yeah science.

I discovered through very careful testing that if I turn on the TV between 1:00 and 3:00 am, my wife stops snorring. Turn it of and in 2 to 3 minutes she starts snorring again.

I did a number of tests and here is the real interesting part, even if I trurn the sound off, the TV on stops the snorring. It must be light related. Maybe next time I'll try a light.

But it doesn't have a remote.

Love Ya / Mean It

Here is a Voice for Type 1 Diabetes Awareness


I am Delaney.

I’m ten.

I’m type 1.

My brother Connor is type 1 too.

And so are millions other Americans.

This is Connor and I with about two weeks worth of our testing supplies. Look at all those sharp thing we poke ourselves with - talk about a pain in the butt - literally. (OK this was before Connor grew a foot)

The blue and pink puck like things are insulin pump infusion sets, IVs. We each stick ourselves with a new one of these things about 200 times a year. That's a lot better than 1,500 shots a year we would be getting without our pumps.

All that is nothing compared to finger sticks. Dad says think of it as only a finger prick. Love Ya, Mean It, Dad, but the dozen or so blood tests we do every day are a pain too. That’s well over 4,000 a year, for each of us.

There is hope. Scientists are working towards a better understanding of Juvenile Diabetes. They believe there can be a cure in our life time.

We are only two kids. Roughly one kid in 500 is type 1. That is a lot of type 1 kids. We all try to be just normal kids but it would be a lot easier with a cure that did away all the holes poked in us.

I would love cure. So would my brother and the millions of others. So my family will Raise Our Voices for Type 1 Diabetes Awareness.

We would love you to join us.

Love Ya - Mean It! is our theme.

For everyone graciously walking or biking for a cure or what ever you do to support to someone with type 1 - Love Ya - Mean It

To the good folks walking with JDRF - Love Ya - Mean It

All you crazy bloggers out there - Love Ya - Mean It

All you kids and adults with living with type 1 - Love Ya - Mean It

GET YOUR OWN CUSTOM LOVE YA / MEAN IT PIN

We would love you and your family to join us. It is easy and fun. You can click below to get your very own, very cool, Love Ya / Mean It pin to wear on April 14^th and year around.

Inspired by Philly's own LOVE statue, the new pin features a Good Shoe walking to support research to cure Juvenile Diabetes. In addition we are offering a limited number the new "Black is the new Black" BadShoe.com pin.
Proceeds from Pins go directly to our diabetes fund raising efforts.

To order a Pin just click over to our Pin Page at BadShoe.com. There is a limited number of pins so click now. The first LYMI pin sold out quickly, don't miss out. You will be taken to our YDMV shopping cart at Pay Pal. You can also make walk contribution to our JDRF walk with a credit card in our shopping cart in $10 increments.

Click early and often.

Love Ya / Mean It

When Pigs Can Fly

What would I wish for if I found Aladdin’s Magic Diabetes Care Lamp?

It being Aladdin’s lamp it would come with some rules, provisos as it were; no wishing for more wishes and no wishing for true love, which in the type 1 universe, is a cure.

So this is the little list I came up with:

1) Insurance coverage for continuous glucose monitoring, the pediatric edition. We are in the trials of basal rate purgatory and right now it closer to hell than the angelic alternative. Actionable information on real trends as opposed to spot checks and guessing when the numbers move seem more like a fantasy than a technological tool without insurance coverage. Yeah I know I’m asking for insurance companies to turn away from the Dark Side.

2) Faster insulin. Insulin that can jump to light speed without the need to get coordinates from the navi-computer. A real live pancreas uses the force respond to blood glucose as food is eaten. It would be cool if the insulin we give our kids could respond fast enough to cover what is eaten without pre-bolusing. Wouldn’t it be great to be able to bolus for what they ate after they ate it and not get a huge spike? Oh and no insulin floating around for hours in a long insulin on board tail.

3) Now the last one is tough, if it is just our household it would probably be sets that last more than 49 hours and 7 minutes. Or maybe management software that isn’t total crap. That said I have community wide third wish. I think what would help all type 1 families most would be to see the NDEP’s Helping the Student with Diabetes Succeed A Guide for School Personnel have the respect and acceptance in the nation's schools as if it were a unanimous Supreme Court ruling (with a side order of Imperial Storm Troopers enforcing it.) We keep saying what good care looks like but relying on Jedi Mind Tricks isn’t getting it done. Countless families would have significantly less stressful lives if all school administrators could simply make an honest effort to implement the guidelines in Helping Students... . It is thorough, clear, and professional. In my opinion so are the schools that work toward implementation of it.


So what are your three wishes?


I asked our 10 year old what her’s would be. Here goes:

1) A Flying Pig. It wasn’t clear if this was a real pig or a plush toy pig. I suspect plush. It was very clear that it had to fly. Not like Buzz Lightyear. Falling with style was right out. Actual sustained controlled flight operations were required. It was unclear if visual flight rules were acceptable or if Instrument Flight Rules would apply. Probably IFR. The flying Pig would be able to tell her if she was low or high. (and probably have an on board food carb database that works unlike the one in our pumps.)

2) A Flying Monkey could apply for the Flying Pig's job and it would not be dismissed out of hand. However a porcine aviator was much preferred.

3) The pump should play Pong. This game playing ability should link with anyone else in the room that also has a pump. It wasn’t stated but I think it safe to assume that the Flying Pig should also be a possible pong opponent.


It is not outside her realm of consciousness that a pig could fly. I guess a cure isn’t either.