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Re: [IP] Vanity & the dangers of DIABETES, was Hiding your pump (Long -- sorry)

Fair enough.  But the teacher in me couldn't let this one go.

Maybe it is more a question of tactics than anything else.  Or maybe it is also a question of assumptions.

Assumptions first:
With supportive, well educated, well off, and thoughtful parents and friends and good access to medical care and info, it is fair to assume that most kids will be able to achieve better control on a pump than off one.  The only problem is how many teenagers (never mind including all the little ones) actually have those things?  The pump is great but especially with humalog and with misinfo or poor support or help it is incredibly easy to mess up.  2 hours and you can be out cold or in seizures (I've been there).  Granted that MDI also takes a fair amount of work, but the old short schedules (even several a day) with some long acting insulin are far more forgiving.  Yes, they don't achieve the same good control.  Yes, the pump is a not so great best solution to an otherwise dismal bunch of choices but it is predicated on a huge amount of resources.  Yes, I think everyone deserves these resources and a try.  But it is naive to believe that simply putting a kid on a pump without any consideration of all this and turning them loose is just going to work.  I get the parents on this list tend to be proactive and involved.  I also know that most of the childhood diabetics I've known over the years were like me -- we became mostly responsible for our regimens very youg:  starting at 8, 9, 11, 12, etc.  As a grown up with the best support system I have ever had, I am suddenly realizing that I do a fantastically better job with my husband around to smile and make suggestions and add numbers for me when I am tired and remind me what I can control and what I can't and that I don't honestly know if I would have survived forever entirely on my own.  I'm grown up and despite all my independant tendencies need some back up.  What about kids?   It's not fair to set the pump up as a "fix it".  It is a tool that can make life a lot better.  Everyone certainly deserves access to that tool.  But they also deserve a realistic picture of what it takes to use it and some support to accomplish that.

On the tactics end:
I appreciate the statistics.  I appreciate that they are the hard evidence and that they ought to motivate us all.  But I am concerned about threatening kids with statistics or how horrible the future will be if they don't....

When I was diagnosed, I was repeatedly marched around the hospital to see and meet all the "non-compliant" diabetics who had lost legs, feet, eyes, kidneys,etc.  I was supposed to be horrified and I think I probably was although I mostly just felt bad that everyone treated them with such disdain.  Sure, I was afraid of being like that too.  But those sessions and the endless articles and statistics only made this a fate that, when I achieved it, would prove what everyone else seemed to know already:  that I was inconvenient, a problem, and incapable of doing anything right, much less remaining whole.  Did this affect my control?  No.  Because when I couldn't get things to work I got in trouble so the safest mode was to hide it.  20 years down the road or an unhappy bout of disapproval and parental tears made the 20 year option safer.  After all, if I couldn't appear to be doing things right then, I wouldn't make it another 20 years anyway.

I once went to a meeting with a group of diabetics in their late 20s-40s.  All of us had been diagnosed before age 13 and only 2 of us had been diagnosed after age 9.  I was surprised to learn that all of us had spent years figuring out which complication we could live and what possible options we had when the others hit.  Between the "I told you so"s and the hideousness we felt certain we hadn't managed to avoid ("I've been over 200 at least 2 x this week..."), we all believed we would be blind, on dialysis or amputees sometime in the near-distant future.  One woman spoke about imagining that she could cope with being blind since she then could have a seeing eye dog.  Otherwise, she'd just have to find a way out.  I remember thinking that i couldn't live without seeing (I do too much reading and art work), but no legs was something I could manage if I could figure out how to get my family through it.  On some level, we were joking.  None of us was really planning to kill ourselves or "quit" when the wrong complication came up.  But on some level we were not joking at all.  The jokes were a way of pretending it wasn't there.   But it was there: our families and doctors (who were quite a varied group) had done a great job of engraining this kind of defensive thinking in us and the rest of society picked up where they had left off.

These kind of tactics are used with preteens and teenagers to try to deter them from drugs and drinking.  I've seen lots of "teacher research" that suggests they are at best successful once in a while and often cause more drug and alcohal use.  Kids realize very quickly that those harsh threats are worst case scenarios, that some people get away with it (you can see that around you with diabetes and drugs/alcohal use), and, at least with diabetes, they are sometimes out of control b/c of factors they couldn't have done anything about anyway -- i.e. a displaced infusion set, a cold, etc.  If they can only sometimes control the results, are they doomed?   Threats and guilt will definately work for a while.

But take Lily who last used shots at a relatively old age -- not 3 or 5 or 8 like some of the kids here -- in 10 years she will still actually be able to remember (intellectually) the pre-pump diabetes.  But she won't remember what it felt like any more than you or any of us are likely at this exact moment to remember all the slight feelings we had the last 5 or 10 times we tied our shoes.  The "better than" is not going to cut it forever.   If she's not free to have problems with the pump and to see it as a tool she can get help with, all the long term risks aren't going to make one bit of difference.

For the first 5-6 years, pumping is a fantastic break from shots.  But it also requires an intense amount of energy.  It is  easy and  common for people to feel like they can't do something right so they might just as well give up or rebel.  I see this at the community college level, I see this with my mother in law who needs to loose some weight and keeps talking about it and giving up, and etc.  I could give you many more examples but I will spare you.  The point is just that the"best possible treatment" is only best when it actually works.  Long term fear is paralyzing not motivating.  Check out all the literature and films with threatening parents and children who eventually go off and do the opposite (you could start with Shakespeare or Rebel Without a Cause).

This is not meant to be anti-pump.  It's just meant to be a cautionary note so that people might understand that the pump is not a cure all and much support and understanding are necessary.  Diabetes is not "easily controlled" with a pump but it can be controlled much better and with less short term inconvenience.  Please forgive the lecture.  I know all of your intentions are the best.  It's just that people, especially parents, always seem to mean so well and cause so much accidental harm.  It would be nice to think we can avert just a little.


Michael wrote:

> Wow, that sure seems a bit harsh.  I did shots for 30 years and
> doing pretty darn well!
You are one of the lucky ones. Better read the stats again from the
National Institute of Health. Or better yet, why don't you chat with

Diabetic Retinopathy - the most common cause of blindness
Diabetic Nephropathy - the most common cause of kidney failure
Diabetic Neuropathy - the most common cause of nerve damage and lower
extremity amputation

These complications can be reduced enormously or avoided by good
control (not easy as you know). The easiest way to achieve that
control for most people is by the use of an insulin pump. Data
gathered from list members indicates an average reduction in hba1c to
6.9 for members of this list. That is well BELOW the average cited by
the DCCT for which reduction in complications for the above
conditions were cited as:

Diabetic Retinopathy - risk reduction 76%
Diabetic Nephropathy - risk reduction 43%
Diabetic Neuropathy - risk reduction 69%

These stats were for individuals with an aggregate group
hba1c of 7.2 during the study, whereas pumpers on this list as a
group average 6.9

Am I being to harsh, I don't think so. The biggest problem today
facing the those who have diabetes is that everyone thinks it is
easily controlled by injections of insulin. That is why research
funds are difficult to get (earlier thread) and why the problems of
many persons with diabetes are brushed aside by the medical
community. For long term good health it is essential that blood sugar
control be as good a practical. Being lucky doesn't change the
outcome for the vast majority of people afflicted with this
condition. The "it won't happen to me" attitude is juvenile at best
and foolish at worst. I am not criticizing your response on a
personal level, this is a national - no, make that world wide
problem. Diabetes is a killer. The level of awareness of the damage
caused by this disease needs to be raised. Might as well start right
here. I for one, do not want my daughter to ever have to deal with
the complications of diabetes. I know very well what some of these
complications can do. My father and uncle both suffer from macular
degeneration even though they are not diabetic. One is blind and the
other is close behind with only partial vision in one eye. The
question to ask of the young women mentioned in the earlier post is
simple. Should she worry about the 'looks' of a pager size object
that literally millions of people wear daily (pagers) or worry about
the complications of diabetes which if untreated NOW will be
devastating in her future. Brings to mind Lily's diabetes camp
counsler who at age 20 had already undergone laser surgery in both
eyes because....... or perhaps Renee's daughter Melissa who is on ACE
inhibitors because of microablumin levels that were close to 100 time
normal (talking about a 14-15 year old here). When is it too soon to
undertake the best possible treatment for diabetes?

I don't think I'm being to harsh, just realistic and aware of the


> Michael wrote:
> > >  She wants to wear little dresses etc. and does
> > > not think she will be able to accommodate it.  I told her miss
> > > america has one.  Does anyone have any suggestions to convince her??
> > >
> > You might ask her how she would like to accomodate retinopathy, a new
> > kidney or maybe dialysis, or perhaps feet with only 3 or 4 toes, or
> > maybe throwing up all the time and not being able to eat. Unless she
Insulin-Pumpers website http://www.insulin-pumpers.org/