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Re: [IP] (IP) Diabetes horrible?? (My opinion)

On 6 Oct 00, at 11:14, Carrie Super wrote:

> I've read alot of postings here, where people are saying how horrible
> diabetes is, and that it sucks.  I don't consider diabetes being horrible,
> ok it is not that great but it's not all that bad.  It could be alot worse.
> What is so bad about eating healthy? Alot of people eat very healthy just
> because its good for you!  What is so bad about taking shots or wearing a
> pump all the time, to me it is just like wearing a pager.  

Hmmm... This is one of those that I'd better get on top of the soapbox 
before I pick it up and throw it...  Ooops... that was the Halon automatic 
fire extinguisher that just went off here in the office.  Looks like it got the 
flames put out just in time...

Eating healthy?  I'm not sure about that one.  First, the dietician tells you 
that you can never, ever, ever, no more, not again, ever, under no 
circumstances eat anything that tastes good.  July 2, 1982, I had been told 
by my doctor an hour before that I had diabetes.  I was hospitalized in 
extreme DKA, had an I.V. hooked up, had just had my first insulin shot given 
by the pub dart throwing champion and  had just been chewed out by an 
ancient nurse because I hadn't taken care of myself (she didn't read the 
rest of the chart to see that I was newly diagnosed)  

As far as the eating healthy part goes we had always eaten pretty well in 
our house.  The ADA diabetic diet wasn't that difficult for my wife to 
learn, except that most of the stuff out of the cookbook that year either 
tasted like boiled cardboard or roasted toothpicks...  I was so excited that 
I felt like dancing as I left the new dieticians office when I visited for an 
update a few days after I went on the pump.  She had just told me to throw 
the diet plan out the window and we went on to discuss normalized diets 
with carb counting...  I don't dance so the hospital hallway was spared that 

Taking shots?  Are you one of those people who can use  a 16 gauge needle 
for your shots?  I have always had an intense fear of shots, probably from 
my childhood and caused by being told by the nurses that "this won't hurt a 
bit" and then watching blood run down my arm as it throbbed from the 
pain...  When I was on the four to six shot a day game there were some days 
when I would sit there for forty five minutes psyching myself up for the 
first shot of the day.  Insulin shots can hurt, and usually did...

Compared to the pincushion days, the pump is much better.  I've 
had people comment "I wish I could get a pager in that color too" when they 
see it.  It is a little annoying when I wear my pump, my radio, my 
leatherman tool, my cell phone, and my meter on the same belt 
that is trying to hold my pants up.  I told my wife that I think 
I need suspenders for my equipment belt, not my pants. 

> It is not contagious and is not anything that anyone should be ashamed
> of.  It's not our fault that we have this disease.  In my opinion it is
> nobody elses business what you are doing with when you poke your finger
> while out at a restaurant, or why that pager-looking thing is beeping
> everytime you hit a button.  

The catch is that we are still discriminated against.  And it's legal 
government endorsed discrimination, courtesy of the establishment.  Try to 
buy health insurance and you'll quickly discover that you are a member of a 
persecuted minority.  Many "health professionals" will mistreat you on sight 
because "you ate too much sugar" and are thus responsible for your medical 
condition.  Many of them are so far out of date they don't know what your 
meter is, much less how the pump works - yet they are willing to offer 
destructive advice and criticism.

I cannot get a CDL (commercial drivers license) and therefore cannot drive 
a church bus or volunteer to be a backup driver for the bus for a field 
trip.  In many states diabetics have trouble just keeping their regular 
drivers license.

Many of us have had our lives disrupted in major ways because of this 
disease, condition, affliction or whatever you want to call it.  Our lives are 
constantly affected, from worrying about whether that new medical plan 
the office is switching to will cover pump supplies, to having someone 
complain that we are testing our blood sugar in public.  (Boycott any paper 
that carries Ann Landers!)  My wife worries when I'm driving because she's 
been around me when my bg does one of those diving through the floor for 
no good reason tricks.  Her fear is that I'll be on a business trip and end up 
like that guy who was listed in the papers a while back - beat up by the 
cops when he was having a hypoglycemic episode because they thought he 
was a druggie.  He almost died before they figured out he might have some 
other reason for being unconcious.

There are other ways that we are discriminated against.  Many people have 
been denied promotions, raises or otherwise mistreated in the workplace 
because they are seen as "captive employees" who cannot leave and who will 
thus accept being mishandled.  The courts are busy gutting the ADA, which 
used to be perceived as giving us a little help in that area, but under the 
Clinton administration they are forming the opinion that we have a covered 
handicap as long as we don't treat it. There's the subtle, social 
discrimination that operates against those of us who are publicly practicing 
diabetics.  I've had people take a plate of food away from me at dinners, 
picnics and even at restaurants when they see me eating something that they 
think I shouldn't have.  I've had people "encourage" me by telling me about 
their great-aunt Sophie who died at age 50 after loosing both feet and 
never eating any sugar for forty years.  

> I am just thankful that there is a better way to help us manage our
> diabetes, and ok, yes there is a chance that most of us will have
> complications, but you could also walk out to get the paper tomorrow 
> and get hit by a bus.  

Given the traffic around here, I'll gladly trade diabetes for the chance of 
getting hit by the bus... and I live right next to a school.  

I am glad that the technology for diabetes managment is constantly 
improving.  I would like to have that hour or so each day that diabetes 
dominates back.  I would like some of the missed opportunities that this 
condition has taken away from me.  I'd like to finish graduate school but 
that was one of those things that was given up in favor of a job with good 
medical coverage.  I'd like to have my boys grow up without having to help 
by watching Daddy to see if he's acting strange and needs to eat.  I'd like 
to be able to go on a trip without having to carry the meter, backup meter, 
insulin vials, infusion set changes, test strips, glucose tabs, emergency 
snacks, and all the other parts of the twenty pound "medical pack" that I 
have to carry with me.

> Life is very unpredictable, but if you live life
> thinking because you have this disease your life sucks, then it probably
> will. 

The condition stinks, and it makes my life and the lives of those around
 me more difficult.  That's why I constantly seek to use the best 
available technology to help manage this disease.  However, to tell 
me that "it could be worse" is worse than remaining quiet because 
it is a blunt reminder that "it could be better" too...   

There isn't a good score card for chronic or serious medical condition.  It 
should be regarded as a Boolean function - it is either true that you have a 
serious medical condition that requires minute-by-minute treatment or you 
don't.  There are many conditions that cause this to be true.  Any of them 
or any combination of them is bad.  If the function  
die_without_treatment(your_name) returns True, then you've entered what 
some have called the negative pressure zone.  (translation - it sucks)  It's 
hard to create a true relative ranking of conditions.  All of us face the 
situation where we have to make some tough decisions and continually 
manage our condition.  Our long term prognosis may be more optimistic than 
others, as long as we have access to decent treatment, equipment and 
supplies, but it is still a long term, difficult to treat chronic condition.  

Our best option is to attempt to get the best information, treatment and 
technology to manage our diabetes each day.  We then have to make sure 
that others are informed, educated and we may even have to do a little 
congress-critter harrassment to get them to allocate more money for 
research (We want a cure, we want it to be available for everyone, and we 
want it NOW!)  

You did make one important point that cannot be emphasized enough.  If our 
lives are bad because of diabetes then we need some serious counseling.  If 
our diabetes is bad (assumed to be true) and that makes our lives difficult 
then we have a better chance of dealing with it.  Diabetes may be a 
contributing factor to a life in the negative pressure zone, but there are 
other factors that can cause a lower pressure region in our lives...

Hope everyone has a good weekend!  
Rev. Randall Winchester
WD4HVA (email @ redacted)
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