December 30, 2007

Psychological Whipping Boy

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Type 1 isn't easy.

It is juggling daily, activity, checking, eating, bolusing and activity. You want a day off, you want a holiday off. You don't get it. Our holidays started with a trip to the endo and our A1C were up. Not bad 7.5 but still both were up.

Humbug.

To a large extent we take life a little less intensely than a lot of other T1 families. We eat what the holidays offer and try to bolus around it. We don't use scales. We try to have normal lives. Still it is a lot of work and you get the feeling that more intensity may be needed.

We expected Delaney's to be up. She has been working though some basal rate changes. It is that growing thing. We still need to work out some Delaney's overnight numbers but we are making progress. Connor's number was a bit of a surprise but to be honest his attention was on being in a community theater play and trying out for the school play. He says he needs to test more at school and probably back stage too. What is really important is he is still managing his diabetes almost completely autonomously.

We need to bring both of their overnight numbers back into tighter control. CGM would be such a great tool for this. Even if it was only used overnight. Plug'm in, put'm to bed, think about it in the morning when your brain works.

I wish the insurance company got that. CGM will make trend spotting better. We will do it more if we don't have to get up every 2 hours for a few weeks to spot a trend make a change and check to see the change had the desired results fine tune, lather, rinse repeat.

OK I get that insurance companies are there to not pay for health care. They are about actuarial expectations and minimal payouts. We, the patients, are NOT their customer. Their customer is the company who pays for the insurance and that company and the insurance company are all about low costs. Care costs and neither the insurance company or their client have care as a priority.

What I still don't get is why the ADA, in the person of Richard Kahn, is anti CGM. But to be honest, we the people with T1 are not the ADA primary market either. ADA is a big self servicing special interest group. It is more about keeping itself healthy and cash flowing so that it can pay huge amounts to its executive leadership (AKA Kahn.) An executive leadership that are more interested in big deals with big companies (like soda makers) to move big money around to make the big compensation look small than caring about individual members.

I have been trying to get past my anger at Mr Kahn's anti diabetes technology comments of a few months ago. As you can see I have made little progress. Why little progress? - Well because I have to get up at night and do basal testing to properly manage insulin pumps. CGMs would do that while I sleep.

Mr. Kahn is on record as thinking that CGM, pumps, and even strips in most cases of diabetes (he doesn't often distinguish T1 from T2) strips are a waste of resources. He says more testing needs to be done, so presumably funds should flow from funding CGMs, pumps and meters for individual people with diabetes to ADA to do the test they are not doing now with the money they have now, inflate the ADA budget. His already generous compensation package* would naturally rise with the tide.

I have no doubt that Mr. Kahn is a capable caring man. That and he is dead wrong about technology and type 1. He is also a voice that the insurance companies will hear and cite as a reason to choose not to fund CGMs for clients. The only choice I have is to not renew my membership and make a case of others to do the same.

No technology is the panacea Mr Kahn seems to set as a bench mark, one that works without the operator paying attention. He is right BG checks without coaching on what to do about it is pointless. But the meter is only that, a meter. In the hands of someone striving for compliance it is a tool. It is equally pointless to hold back technology from those who will use it as part of a care program because the non compliant will not benefit from it without becoming compliant.

We would be left presumably with pee strips.

Stress tends to make me angry. A lack of sleep doesn't help either. We have two T1 kids and that is enough to generate more than a little stress. I would love not to have enemies in diabetes care. Not the school. Not the ADA. Not the food police. Not the Churches who will not admit the little diabetic children. Not the theme parks. Not the food places that don't have carb counts.

I understand part of this is that I am frustrated with the fact that type 1 is forever and since I can't strike out at it I can focus on the people who make type 1 harder.

Most of those groups like the ADA are self serving institutions no mater what the say about themselves. They take care of the institution first and serve a client base only after assuring the continuity of the institutional hierarchy. For the most part we are not in a position where service is a competitive advantage to the institution.

Yet part these are also whipping boys, a place to focus the frustration when type 1 becomes overwhelming. I am sure part of the deal and it is probably not a healthy thing.

*Mr Kahn's generous compensation package (see page 70 of this .pdf)

December 17, 2007

It used to be a Teddy Bear

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Delaney had been running high. Growing. I know all parents feel this way but, can’t they just stay small? - just so the Basal rates last for more than 6 or 8 weeks.

Nope.

It was time for the basal reprogramming process, start over night, work through the morning, into the afternoon and evening. Naturally it was the week Mrs. YDMV went on a cruise with her girls friends, leaving me to realize just how much I appreciate not being a single parent the rest of the time she is here.

I checked her at 11, midnight, 1, 2, 4 and 6. Delaney’s number used to get funky between midnight and 1. Not this time. The number started up a little at 2 and by 4 were skyrocketing. Dually noted. I corrected and settled in for a few more nights of checking to see if this was a trend - if so the basals would be adjusted accordingly. Oh joy! a few more nights of this.

I was just getting back to sleep when I heard such a clatter, I should have sprung from the bed to see what was the matter.

(Did I mention the 11, midnight 1 and 2 blood checks? At 4:15 I tried to pretend I didn’t hear it.)

Then more clatter and the older son was at the door to tell me Connor fell out of bed.

OK I get it, this was the spring from the bed kind of clatter.

I slouched out of bed to see what was the matter.
Away to the stairs I crawled like a snail,
Staggered to the steps and stepped on the dog's tail.
The green screen of meeter let off a soft glow
that gave a luster to the body below,
and what to my wondering eyes should appear?
No not miniature sleigh, and eight tiny reindeer.

Only Connor half under then bed checking his blood.

36.

We keep juice in his room for just such an emergency, well with type 1 it is more of an eventuality. Connor has swim practice a few times a week. The coach swims him hard. It would be enough to drown me.

Next night he was meant to back off the basals. I didn't know if he did but since I was up confirming the other one's late night trend I stopped in and checked him too. 34. 34 is #$ if you hold down the shift key. It is also close approximation of what you say too.

So I started checking in to see if he did a temp basal after swimming.

The next night, fast asleep he had a juice with him, tucked in just like his Teddy Bear when he was little.

December 15, 2007

With Energy & Enthusiasm - Who Needs Accuracy

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I read two columns on diabetes:

Someone you know - maybe you - has diabetes
Take control

http://www.philly.com/dailynews/features/12196296.html
http://www.philly.com/dailynews/features/12453731.html

I wan't too impressed so I sent this:

Kudos for getting the difference between Type 1 and Type 2 correct. You correctly write that Type 1 is an autoimmune disease mostly surfacing in children.

Unfortunately your examples are all cases of adult onset.

You further cloud the issue that type 1 is not preventable by recounting Mr. Gladsen saying "I would go to McDonalds and eat like a horse.” This reinforces the idea that type 1 is related to fast food abuse. That is not the case, as you said it is an autoimmune disease.

In your second article, mostly about type 2, you recount type1 complications. In neither article do you speak about type 1 from the perspective of a child or a family with children.

Instead of illuminating the distinctions in life challenges between type 1 and type 2 two you sadly compound the confusion between them. A child living with type 1 will take hundreds of insulin shots and do thousands of finger sticks to check their blood each year.

All these sharps are, at times, literally a pain in the butt. Reporting that stigmatizes them with the implication that their type 1 is somehow the result of diet, inactivity or eating like a horse at McDonalds adds insult to the thousands of little injuries that result from these blood checks and injections.

I suggest you contact Children’s Hospital of Philadelphia or the local West Chester base manufacturer of Insulin Pumps, Animas Corporation, and learn how Type 1 really impacts children and families. Or stay at your computer and read parents’ posts at Children With Diabetes (http://forums.childrenwithdiabetes.com)

I am sure you will find that the experience of Mr. Walton is way out of the norm. Type 1 families work hard every day to successfully manage this condition in spite of misinformation and prejudice. The suggestion we need to see the case you site as a wake up call to “get real about” managing our health is at best uninformed and at least condescending.

The author responded:

thank you for sharing your comments.

With Energy & Enthusiasm,

Kimberly

December 12, 2007

Out of the Fog

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Connor took a date to see Stephen King's "The Mist." Me, I am not a scary flick kinda guy. The thought of the kid dating is scary enough.

I drop off. I pick up.

They saw Beowulf the week before. Connor didn't like it. He wouldn't say that to his date in case she did, but he told me later.

Connor and his sister are quite the movie critics. They get into all kinds of stuff from writing to lighting and acting and direction. If they are any indication the animation techniques of Beowulf are not the wave of the future. However, I think they may have more discerning tastes than the average teen.

So, I was looking forward to the Stephen Kind review. I was a tad concerned that the review may suffer from the classic strategy of choosing a scary flick for a date as a reason to sit comfortingly close. It may however be that Connor likes dates because they involve movies more than movies because they involve dates. I don't know.

Anyway I need not have worried. I got a heated review.

He hated the ending. Ranted about it as soon as he got into the car, her views not withstanding. So after we dropped her off and he escorted her to the door while I discreetly turned the car around I got the details, movie details, the date is their business.

Seeing how I'll never see the film, he explained the movie on the way home. You may see it, so I'll skip over the details. Suffice it to say it turned out that Connor was of the opinion that the father didn't defend his family up to Connor's standards. "I would fight for my kids!"

I got to thinking about how a 14 year old comes to that opinion of fatherhood. Maybe all the bad times, struggles and tears standing up for proper care of his diabetes in school left a mark. Thinking back through the fog of that time I remember thinking about that. Maybe this turned out not to be the scary movie I was worried about.

The idea of dates is still a bit unsettling and I still don't like Stephen King but the movie review was a nice Christmas present.

December 10, 2007

Fatherhood and Trenches

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I want to write something profound and motivating about fathers and diabetes care. Here is the problem. I can't think of anything profound or motivating.

I know there are great dads out there who are engaged in their kids lives and as a result are involved with the care of their kids who have diabetes.

I also know there are a lot of dad's out there who aren't. I hear the frustration of their wife's in online forums. I wish I knew how to help get them involved as I suspect they are missing out on a lot of the fun in their kids lives.

Watch Pixar's The Incredibles. The story here is the dad is missing out on the adventure of his life and that is not the headline adventure of a super hero but of an engaged dad. Great flick. (At least two T1 dads involved in the production.) OK fun movies out of the way, maybe there are some other things to explore.

I know I didn't have a choice but to participate. I am as needle-phobic as they come. They spotted that at Children's Hospital. When our first D kid was in the hospital, they made me give him a shot. "Here it is dad's turn." I was probably more scared than he was but then maybe not I am sure kids can read fear in their parents better than dog smell it on an intruder. They made me get over the fear. Fear is real and I suspect that fear is one reason some Dad's don't do as much.

Fear of hurting the kid. Fear of not knowing what we should and not being able to show it, fear we will not do it as well as or the same as mom.

"No Fear" is a stupid slogan, of course you have fears - deal with'm.

Mom's way is another issue. Now ladies here is where you are making a choice. Dads most likely will not do things the same way you do and you have to be good with that or you are choosing to do it all. We are all different, not just husbands and wives all of us in all our families. To expect me to do things exactly the same as my wife is not going to work. YDMV. Ladies if you make it my way or the highway most guys are gonna hit the road or at least tune out. Say "It's Your Turn" and step away.

I can pour 3/4 of a cup of cereal by eye. Dead on. I have had to proved it a number of times to the kids and to mom. I am a good cook but I never measure anything. Making me use a measuring cup will piss me off. Measuring and scales work great for some folks - God bless'm, It ain't me. YDMV.

Guys - Step Up.

In point of fact there isn't anything magic here. You're on a team, you are a guy, you know that means ya gotta pull your weight. Fatherhood is about blocking and tackling not 85 yard glory pass plays. Get in there and do it. It isn't the glory of super hero work - there is an adventure in that the day to day work slogging it out in the trenches, be a part of it.



YDMV - I would love to hear from other dads.

December 2, 2007

How you see youself

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One of my friends over at Children With Diabetes (CWD) has started blogging about diabetes. He is an adult onset T1 and has a young T1 child. Great guy. Great perspective. Check out his blog www.diabetes360.blogspot.com

Both he and his wife participate in the CWD forums. I hope they come to one of the CWD conventions I am sure I would enjoy meeting them and we can always use more people at the pool side parties.

It common at CWD for parents to create user names that include their T1 child's name. For example Bobbysmommy would be Bob's mom. My friends wife, following this practice, is Emmasmom. Now here is an interesting choice he is Brensdad after his non diabetic son - right form his signature "Brenden, age 8 non-D. (That's where "Brensdad" comes from.)"

We are the parents of all our kids - even when the D kids take more maintenance. It is a dangerous trap to let the diabetes disproportionately distribute our parental attention. (How was that for alliteration?)

So hats off to Brensdad for making that distinction in his user name.

OK in all fairness there is also a Emmasdad at CWD but Brensdad signed up before Emmasdad or Brendensmom. Some times the who is who is it confusing - but I digress.

Diabetes puts enough strain on a family. Don't let diabetes care be seen as favoritism. No matter who you are or how you define yourself, be sure you are mom and dad to all the kids.