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Re: [IP] Expressing Emotions -- FRUSTRATED!!!

On  7 Jun 98 at 10:01, Sue W wrote:

> Apparently the statement below is not true.  I thought this was a safe
> place, among friends, to vent my frustrations.  Was I ever wrong.  Thank
> God I haven't opened up very much so far.  

You should be able to vent here... at least I hope so.  This is the 
one group of people I've found that at least has some of the common 
experiences that nobody, repeat - nobody, else can even imagine.  How 
about that sinking feeling from the pit of your stomach when you're 
sitting in an airplane at the start of a long flight and suddenly 
your infusion site feels like it is coming out where the line got 
tangled in the seat belt and then got caught on a button on the 
person in the next seat's coat...  and all your equipment except 
for the meter is in the overhead compartment.  Or the frustration 
when you order diet Coke in the restaurant, they give you regular, 
and then the manager gets mad because "we wouldn't do that" when you 
question why they keep bringing regular instead of diet...  

> After spending last night in the ER (again) and having my Endo
> completely contradict himself several times, I feel like maybe just
> giving up.  Apparently no one cares ... so why should I?  Maybe if I am
> lucky this damn disease will kill me sooner instead of later then I
> won't be your problem or anyone else's!  

That's why so many of us get "down" on "medical professionals" - they 
are the experts, and when dealing with them I am reminded of the 
definition of an expert that was given in one of my electrical 
engineering classes - "a former drip under pressure (ex-spurt)"...   

I hope that you'll discover that many of us care and hope you don't 
give up.  At the least that would mean one less person who could 
understand each of us.  The problem is that we are all people with 
strong brains (well, I'm not so sure about Buddy <grin, grin> and his 
brain cells), drive, determination - so we should'nt be surprised 
when we run into the brick wall of "doing everything right but 
it all coming out all wrong."   Those who haven't hit it yet will 
sooner or later, and the rest of us who aren't in the process of 
bouncing off the wall carry scars from previous encounters.  Wear 
them as badges of honor - at least you are fighting the good fight.  

> I am sick and tired of seeing people put down because they express their
> frustration about trying to take care of themselves.  I feel like giving
> up on the pump, the MDI, and everything else.  Maybe then, when I quit
> trying to take care of myself and feel like shit, someone (like an Endo
> or such) will realize that there really is a problem and help me do
> something about it!  I don't imagine that this likely, though, the way
> things look!

Put downs are as varied as the person doing the "putting."   I 
generally write them off as either signs of ignorance, fear of what 
is expressed or someone else who is in denial.  Most of us cycle 
between acceptance, grief, denial, proactive action and confusion.  
Some of us can even get very creative in our combination of these and 
other emotions.  I was talking to a friend the other day and he was 
surprised when I told him I loved pump therapy and I wanted to slam 
the thing into the brick wall and scream in frustration.  He couldn't 
begin to understand the combination of frustration, relief, hope, 
exasperation and stark raving fear that we all live with continually 
whether we've managed to bury or redirect it or not.

As far as medical help, I wish there was more to say except been 
there, done that, and it stinks.  We have to do our own research too 
often - and finding resources including CDE's, MD's, nurses and 
things like journals, books and papers is hard, time consuming and 
cna be expensive.

> Don't tell me to get psychological help, I already have.  It doesn't
> help much either.  All they want to do is dope you up on a bunch of
> pills so you won't be a bother -- the hell with any real problems.

I think they all have stock in the pill companies...  they love the 
pharmacies...  but they are in a corner too.  I know a couple of 
doctors who have told me that many times they don't have a clue about 
what is wrong or what to do - but the patient is demanding something 
so they've learned to look knowledgeable, dispense a pill and many 
times it works.  I thought that was taking the "placebo effect" too 
far until a read an article in a recent Scientific American that 
discussed research demonstrating that it is a real medical result.   

> Sorry I took up the bandwidth to vent -- I really have a lot more to say
> but I won't bother you with it because you obviously don't care to hear
> about it.
> If you want to flame me for this post ... GO AHEAD!!!  I really don't
> care, I can always scroll through the shit.

As far as I can determine it was good use of bandwidth...  and if
people complain about someone expressing frustrations, problems, fears
or even good things then I will be glad to help them set up Pegasus so
they can filter out any message with negative words in the text.  

Flaming is a waste of bandwidth.  We've all had those days where you 
get up, do everything right, and no matter what you do it all falls 
apart and goes down the toilet.   Then you have those days that start 
off good and then by mid morning you're swirling around as you go 
down the drain...   I had one of those yesterday - even though my bg 
was OK I was exhausted by a trip to Detroit, airline hassles, dealing 
with yankees (hand the girl at the hotel my credit card, she says 
"Hmm...  You have a reservation...  you want to stay here or what?" 
in a tone of voice that is dripping hostility...  of course my weird 
sense of humor kicks in and I say "Yes, Maam,  I've heard you even 
have the outhouses IN the rooms and I'd shore like to see THAT." with 
my broadest southern drawl...

> Good luck with your happy little lives ... those of you who have them. 
> The rest of you have my sympathy.  I've been there, done that!  I have
> no solution.

"Happy little lives"  - that's an interesting concept.  I have a 
friend who is dying of cancer and is under hospice care.  He's 
consistently happy even though he is in pain and looking death in the 
face.  I also know another person who is perfectly healthy and has 
more money than most of us on the list, but her life is extremely 
unhappy because she cannot get the exact shade of blue in the 
bathroom in the hallway of their new house...  

Me, I'm not sure what "happy" is...  I've studied a lot of things 
while preparing for my work as a pastor, and I've never gotten a good 
handle on this "happiness" thing.  I do know that our society screws 
us up by a false definition of happiness.  I'm learning to be 
content, not necessarily "happy" because I don't know what that 
really means.   I'm content with my marriage, with my job, 
with my children and with my friends - and I am hoping to be able to 
improve the quality of relationships in each of these areas.  I work 
hard to control my medical condition instead of letting it control me 
- and almost succeeed sometimes.   Maybe we all need to think about 
this for a moment and let our response be tempered by the fact that 
we all have those days that really suck the life out of us...  and on 
those days we desperately need to know that somebody understands.  
And we also have those days that are exploding with joy and we need 
to share those with others who understand....

I appreciate your understanding more than your sympathy - I get that 
from the people who say "diabetes... my brother-in-law's third cousin 
on his stepsister's side has that..."  I appreciate somebody who can 
stand with me as we both scream "this stinks" as loud as we can, and 
can then tell me a funny story or discuss our shared anxieties, hopes 
and dreams...  
Randall Winchester

* The views expressed here are mine and do not necessarily *
* reflect the official position of my employer.            *
* There's no guarantee on anything said here...
* If I say I understand something completely the only thing
* we can both be assured of is that I must have completely
* misunderstood something. 
Insulin-Pumpers website http://www.bizsystems.com/Diabetes/
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