April 29, 2008
April 28, 2008
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.
April 23, 2008
No evidence for diabetes self-monitoring
Blood glucose self-monitoring not cost-effective, report says
Self-monitoring kits could cause 'harm' to diabetics
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.
April 20, 2008
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.
April 19, 2008
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 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 . 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 . 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 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 too.
The real answerer for why I do a 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 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 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 .
April 16, 2008
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.
April 15, 2008
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.
April 14, 2008
I am Delaney.
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 14th 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
April 13, 2008
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.
April 10, 2008
What in the name of God is Gods name? And for that matter what's he do?
I am not at all convinced we see the workings of God, we certainly don’t see them in real time but some times I think we see the acts of Providence after the fact. Providence, it seems to me is the sorting out the mess we make with our freedoms into the best that it can be. I think in retrospect there are some things that seem silly that turn out to have a lot of good after the fact.
Take Atkins for as a case in point, now I mean this as much as a joke as anything but I’ll use it as an example. A few years back the lovely Mrs. YDMV and I did the Atkins no carb thing. I lost 15 pounds over three months an put it right back on just like everyone else. I did learn to carb count. Funny, a year later that carb counting became a life safety skill for our first diabetic kid.
It was almost like there was this master plan out there saying, ‘You you gotta learn this skill, not for you but for what is coming.” Almost like it was providential.
So I am not so sure that God doesn’t have a hand out in every little aspect of life and I am just too dam stubborn and stupid to see it.
Someone on one of the diabetes parents boards (there is a board for everything out there) wrote: “I truly believe in God, Allah, Jehovah, Buddha, by what ever name your religion calls it, there is a Master force directing the universe.”
Wow I think there is a lot of wisdom in that. I particularly like the by “what ever name” part. Assuming there is a God, that God is going to reach out to people in the way that best lets those people understand Him (Her if you like.) OK who has kids? (On that board we all did it was a diabetes parents board right? LOL.)
Anyway as parents we try every conceivable way of explaining stuff to our kids we can, to get them to see a point. Seems like a good plan. I figure God would do it too. God’s a parent. I can’t see a parent getting all hung up on the name we call Him, as long as we call.
There’s even old testament biblical teachings about this. As far as I understand it to goes like this; Abram (Abraham’s name before God changes it) get called by God Jehovah. But Abram is a newbie and doesn’t know from Jehovah. He grew up with a house idol called Shaddai. So Jehovah says to Abram something along the lines of, ‘look you’re used to the name so call me Shaddai, we can sort it out later.’
Now that is an interesting historical and religious moment. Your big three religions all look back to this moment as significant.
Jews, Muslims and Christians all look back to this event as a critical part of their faith. God is saying, “Hey Kids. There is only one of me, God Jehovah, but hey call me what you will we can sort that out later, just get the one God idea down for now.”
So here is the Old Testament fire and brimstone, iniquity to a thousand generations, God saying, something like ‘Dude just call me the nick name for God you know for now.’
Ya think we could figure that out but (my apologies to Steve Martin) Nooooooo.
Look at all your major religions and there are striking similarities if you are willing to be open minded about it. The basic ideas of the Ten Commandments are there in all of ‘m.
So maybe that all powerful God is saying to the kids, ‘Dudes call me what works for you, live a good life, here some basic ideas on how to do that. I’ll translate the general ideas into the variety of different cultures you creative little twerps have come up with so each of you has some basic idea of Me. Start small. I can work with that. Be cool dudes.’ (Yes I think God uses the word Dudes, particularly if it helps get His ideas across, hey wait that's my whole point here….)
If God is infinite love and wisdom then we are not going to understand but a small, small, finite bit of Him. In fact by definition of finite and infinite we understand nothing in relation to everything, so ‘Call me what works for you to learn something of the love part’ seems real logical to me.
So if we are allowed to call the one God by a nick name that works for our limited cultural understanding aka Shaddai, I can’t quite see how we are with in that same spirit if we have trouble when others call that same God by the names of Allah, Jehovah, Jesus or what ever.
So when we (read humanity) do something in the name of God is it really in the name(s) of God or taking that name in vein. God's will or ours?
April 9, 2008
Once again there is exciting news on research to cure Type 1 - in mice - sort of.
Maybe it is just me, but are most stories about possible cures about curing mice? OK, sometimes the story is about how the mouse model isn’t always analogues to the human model - No Kidding!
Well, I have more exciting news for mouse cure fans! Science is looking to cut the mice out of the deal.
Don’t get too excited. It isn’t that there is a cure for actual people or mice. No, they are working on a virtual mouse!
(Thomson Financial) - Entelos Inc. and American Diabetes Association (ADA) announced that LONDON members and researchers will have free access to Entelos' Realab 'virtual mice' testing platform. ADA
The simulation technology will enable researchers to conduct simulations on drugs, drug combinations, dose levels, dosing regimens, therapeutic targets, biological pathways and functions on the primary animal model used to study type 1 diabetes.
Science will be able to cure virtual mice soon. So a cure for virtual humans is just a few years down the road. I am sure this will be big news to all the type 1 avatars in Second Life.
No mice were harmed in the writing of this blog entry.
Tolerx Advancing Novel Type 1 Diabetes Agent into Phase III Clinical Trial Program Following End of Phase II FDA Meeting
Phase III study will evaluate effects of otelixizumab, an investigational
anti-CD3 monoclonal antibody, on preservation of endogenous insulin secretion
CAMBRIDGE, Mass., April 9, 2008 /PRNewswire/ -- Tolerx, Inc., a
biopharmaceutical company engaged in the discovery and development of novel
therapies for immune-mediated diseases, today announced that it is proceeding
toward the initiation of a Phase III study of otelixizumab in new-onset type 1
diabetes. Tolerx is initiating this pivotal trial after reviewing the
results of the otelixizumab development program with the US Food and Drug
Administration (FDA) at an End of Phase II meeting.
One day it may be possible to mimic the tactics used by parasites to trick the body into accepting transplanted tissues or organs.
That is the hope of Dr Shane Grey from the Garvan Institute for Medical Research and Professor John Dalton from the Institute for the Biotechnology of Infectious Diseases at the University of Technology (UTS). The pair has been awarded a $400,000 grant through the Australian Islet Transplantation Program, administered jointly by the Juvenile Diabetes Research Foundation (JDRF) and the Commonwealth Department of Health and Ageing.
The Australian Islet Transplantation Program funds much innovative transplant therapy work in the hope of one day finding a way for recipients to tolerate islet (insulin producing cells in the pancreas) transplants without having to take highly toxic immunosuppressive drugs for the rest of their lives. Many people believe that effective islet transplantation offers the greatest hope for curing Type 1 diabetes, or insulin dependent diabetes.
Experimental Treatment for Type 1 Diabetes Patients Shows Promise
New research monitoring the effects of Islet cell transplantation resulted
in near-normal metabolic control and decreased hypoglycemia. This research will
be presented at the American Association of Clinical Endocrinologists (AACE)
17th Annual Meeting & Clinical Congress, on Friday, May 16th, at the Walt
Disney World Dolphin Resort in Orlando.
NEW YORK - Pfizer Inc. said on Wednesday clinical studies of its insulin
drug Exubera found increased cases of lung cancer, leading developer Nektar to
abandon the troubled product.
BOSTON -- April 9, 2008 -- Researchers at the Joslin Diabetes Center have
identified a gene that is responsible for the division and movement of
marrow-derived, blood-forming stem cells, a finding that could have major
implications for the future of bone marrow and blood cell transplantation.
Every year, some 45,000 patients undergo bone marrow or peripheral
blood progenitor cell transplantation for the treatment of a variety of
diseases, including leukemia, lymphoma, and immunodeficiency. Blood cell
transplantation may also one day help people with diabetes better tolerate islet
cell transplants without the need for prolonged use of powerful
immunosuppressive drugs. In addition, transplantation of blood-forming stem
cells, also called hematopoietic stem cells, may prove useful in halting the
autoimmune process that causes type 1 diabetes.
April 5, 2008
Spicy Tuna Roll from the California Grill, Disney World.
I can’t describe this dish.
It was so good I had to order a second one.
Then I personally thanked the sushi chief Yoshi. This is art. She is a national treasure.
We gave her a ThankShoe pin for making a Magic Moment.
Even my “No Way I am Eating Raw Fish” son liked it.
The diabetic son, who loves Sushi said, with no disrespect or sacrilege, “If God were food this is what He would be.”
At that point, you don't even consider carbs.
April 4, 2008
Diabeta Balance Tea is a gentle preparation of herbal tea that has evolved from the blending of Gymnema Sylvestre herb and Camellia Sinensis. In addition to managing blood sugar levels, the tea also lowers blood cholesterol levels, promotes weight loss and helps prevent liver disease, stomach ailments and constipation....
...For more than 2,000 years this plant has been used in traditional herbal medicines and, more recently, was found to be effective in reducing blood-sugar levels in type-1 and type-2 diabetes sufferers.
Good to know that for 2,000 years type 1 was manageable with tea.
I'll have a side order of cinnamon too.
April 2, 2008
The other makes note of pockets of higher incidence of type 1 and the income of New Zealand neighborhoods. Apparently the rich kids are getting T1 more. (It goes on to the hygiene theory of illness, which I think could go on to suggest we shouldn’t wash slimy stuff off our hands.)
I didn’t know we were doing so well financially. I mean with two type 1 kids you think my family would be living on Boardwalk or at least the Trump Tower.
These stories fall into the category of more studies needed maybe not necessarily right nest to right next to cinnamon studies. I have a need to read news but these have me wondering, why isn’t Donald Trump mainlining insulin?