Diabetic Friends Action Network
Online Newsletter - July Edition

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If you or the person in your life has diabetes chances are you
are seeing and dealing with doctors on a regular basis.  A
diabetic needs consistent care throughout his or her life.  The
relationship a person with diabetes has with his/her doctor can
be one of the most influential factors in how successful that
person's diabetes management plan will be. 

Finding a family physician is not always an easy thing to do.  If
you're new to an area or if you don't know your way around the
area you might not know where to look for a good doctor.  It's
also difficult to try to find a doctor who's goal is to normalize
a patient's blood glucose levels.  There are some doctors who aim
for a higher blood glucose level because they don't think the
person can handle a stricter diabetes management plan.

You might try getting leads.  Ask your family and friends about
their doctors and how they feel about them.  It's important to
expend some time and energy when you're looking for a doctor. 
Remember that your life or the life of your loved one is at
stake.

Try to find out the attitude of your doctor once you find one you
feel you'd like.  Ask him about his/her attitudes toward
preventing diabetic complications.  This is extremely important
if you're a person with Type II diabetes.  Many Type II diabetics
are given the impression that Type II diabetes is less severe
than Type I diabetes.  This is not the case.  Type II diabetics
can get the SAME complications that a Type I diabetic can get. 
If your doctor is telling you different it's time to get a new
doctor.

If you have a doctor who is cold and unfeeling you might not feel
comfortable about asking questions.  If no questions are asked
there might be something that is misunderstood and not carried
out according to plan.  

It's important that a person with diabetes have a doctor who is
willing to answer questions in a friendly polite manner and who
doesn't mind explaining things fully.  Get a doctor who will give
you the care, support, advice and information that you need and
deserve.

It's a big and important assignment.  But it's worth all the time
and effort it will take.

This issue of our online newsletter is shorter than usual due to
a shortage of articles.  We need articles submissions.  We don't
need anything "professional" and don't worry about typing or
grammatical errors.  We want your story in your own words.  It
can be about diagnosis, how you deal with a diabetic family
member, or anything else that affects your live living with
diabetes.  Just send it to BELVE@DELPHI.COM

****************************ARTICLE***********************

CEREBRAL PALSY AND DIABETES:THE  NEXUS AND THE NUDGE
By Samuel C. Eden

Cerebral Palsy is primarily a congenital disease that has as man
manifestations as there are cases.  No two patients present alike
the last figures I've seen from Health and Human Services say
half a million live births a year are affected, half of them
leading unto mental retardation; severity is a function of the
number of nanoseconds oxygen  has been cut off from the brain
and, indeed, the grace of god.  All cps have some difficulty with
fine motor skills: mine is complicated by an imbalance of
abilities favoring my left side. while I would be able to use my
left hand  to stick my right finger, I cannot turn ny right palm
completely over. in order to complete this, I must use my left
hand to retrieve and dispose of the now blood-stained needle and
place it in an appropriate receptacle specially designated for
the purpose and labeled "BIOMEDICAL HAZARD".   Meanwhile, blood
is still oozing from my right finger since I cannot turn the palm
upward.

The other significant reality cerebral palsy exerts is an ability
to concentrate intensely, sometimes whether you want to or not, "
echoing" much like certain clusters of thunderstorms on a 
meteorologists radar. the threshold central question here is
whether these randomized spasms of anger that can most often
terminate for the moment but stay resident can mimic the effects
of multiple large portions of concentrated sugar products such as
chocolate cake; more pointedly, the fatal effects thereof. 
because I do not require daily insulin or an oral hypoglycemic 
medication, the administrative criterion for receiving daily
blood glucose testing via home health nurses has not been met. i 
recognize that no outside agency could be expected to be in my
home at all relevant eating times to take my blood glucose 
levels. Therefore, the apt long term solution would to seek out
va registered occupational therapist   ( hereinafter OTR) to see
if  a non-conventional needle injection regimen at alternate 
body  sites could be constructed. therein is the very nut of my 
difficulties.

*******************************
Last month's newsletter contained a story about a young diabetic
girl who was having problems coping with the fact that she had
diabetes.  DFAN requested that our readers submit what they would
say to Tara to try to make it easier for her to accept her
diagnosis.  Here's one reply we received.


This is what Jenifer should say to Tara.  She should say, "Tara,
you will not be a pincushion.   You can could do anything you did
before and you could even ride a bike.  It will be fine in a
little while you will feel much better."

by Temima Rothmel
Age (almost) 6

Temima wa diagnosed with IDDM on January 7, 1995 at the age of 5
1/2.

DFAN would like to thank Temima and her father Mike for taking
the time to send us this wonderful answer!

**************************ARTICLE*************************
LIFE AS AN EX-DIABETIC
By Robert Blackburn

   If some of our members & readers are not aware, I {Rblackie}
underwent a triple transplant on Feb 24, 95. I received a heart,
kidney, & pancreas from a generous family after the death of
their son. These organs have given me a new lease on life.
Without them I would not now be here.

   I am of a very small group that can claim to be an
"Ex-Diabetic". This will never be a universal cure for diabetes.
There are currently over 40,000 people awaiting life saving
transplants in the U.S.   Of these, only 2,000 will receive the
necessary organs this year & some 4,000 will die while waiting.
If all of the known diabetics were to demand a new pancreas.
there would be an unimaginable demand on the system. I wish that
there was some encouraging news to add here but there is not at
this time.

   There are still many tests & checks that I must under go
despite my good fortune. Daily blood glucose tests, Daily blood
pressure checks, daily weight checks, & an extensive list of
daily meds to keep my new organs going. At present, I must go to
a clinic once a week for blood tests & DR consults.

Also, once a month I must go into the hosp for a heart biopsy to
check for rejection. Any hint of rejection requires treatment
with either Salumedrol injections or TKO3 injections. The best I
can ever hope for is exams once every 3 months & biopsies every 6
months. The pills will be my new burden forever. Even a new life
as an Ex-Diabetic can be time consuming & hectic. I am eternally
grateful for my good fortune to have received a new lease on
life, but there are & always will be special care that must be
taken. So, check with your primary care physician for advice on
how to avoid kidney involvement.  Dialysis for kidney failure is
no fun, it is HELL ON EARTH! The wait for organ transplant can be
long & tedious {mine was some 2 1/2 years}. Please do your best
to avoid any & all complications from our "BEAST". It is a hungry
animal. Live life to the fullest possible extent, but with care.

   Good luck to all & may a viable cure be in our future. If
anyone desires more information about transplants, contact me @
RBLACKIE@DELPHI.COM   I will do my best to answer your questions
or will ask the medical specialists that I now know. An informed
Diabetic is the only way to avoid many problems. Never be afraid
to ask a question, as the only Dumb Question is the unasked one.

Rblackie :}  
Robert
Blackburn
****************************ARTICLE*****************************
WHAT SUPPLIES SHOULD YOU BUY?
 
Once you or someone you love has been diagnosed with diabetes it
doesn't take long for you to realize that diabetes is an
expensive disease.  Test strips for blood glucose testing, urine
testing strips to test for ketones, syringes, insulin, oral
medications, and a lot other supplies make diabetes an illness
that either requires money or a good insurance plan.
 
There are many products available which means you'll have an
opportunity to find a product that will best meet your needs.
But by the same token it makes the job of finding the right
product more difficult. If you're not sure of what you need to
buy you can ask your doctor, diabetes educator, or a friend who
has diabetes.  Sometimes asking a friend who has diabetes will
also get you an honest critique of certain products.
 
After you've made the list of the supplies you need think about
what features you really need, especially in big-ticket items
like insulin pumps or blood glucose meters.  There's no "one size
fits all" rule when it comes to diabetes supplies.
 
For example, if you're going shopping for a blood glucose meter
you may need a unit that small and easy to carry.  Or you may
want a meter that will give you results in the shortest period of
time.  Or you may want a meter that will allow you to save your
test results and let you download the results to your computer.
 
Once you've decided what you need to buy you need to decide what
type of budget you have to spend.  If you're new to diabetes
adding up how much your supplies might cost might be an eye
opening experience.  You can also try to see where you can save
money too.  You can't really take things off your list since you
need them for your diabetes management plan.  Not taking care of
diabetes isn't cost effective in the long run and you're just
risking your health.
 
There are certain items that won't be able to economize on.  If
you have Type I diabetes there's no way to cut down on the amount
of insulin you require per day.  But you might decide not to buy
an insulin pump because you can use syringes.  There's no one
answer that's right for everyone.
 
It's not important to be too focused on a bottom line.  A meter
might be expensive but without a meter you can't keep track of
your blood glucose levels and you can't tell how well your
diabetes management plan is working.  Try mail order pharmacies
that sometimes offer discounts on diabetes supplies.  Chain
stores also offer many discounts on supplies.  Diabetes is an
expensive disease but by budgeting and shopping around you may be
able to find some good deals.


************************GETTING INVOLVED*******************
This is a sample letter you can use as a guide to write to food
manufacturers to try to get them to have more "diabetic friendly"
nutrition labels on their products.  Please add your own personal
thoughts and views to this letter and send it to the
manufacturers of the products you buy.  The forum gives special
thanks to these DFAN Forum members who helped in this project:
TERRIBAILEY, NBOLTUCH, JOLLIEOLLIE, JOHN400, and ROBOWLER

 
As a person with diabetes (or "Significant Other" of a person
with diabetes) I have great concerns over the current labeling of
U.S. manufactured food products.  Although I realize that the
labeling process has come a long way in the past few years, I
also recognize many instances in which people with diabetes have
not been taken into consideration when it comes to the nutrition
labels on foods.  These product labels need to be changed
slightly in order to make the sugar and fat contents less
confusing.  There is also room for improvement when it comes to
listing the food exchange values on each product.  This would
make nutrition labeling more "diabetic friendly."
 
The current labeling does state approximately how many calories
of a food product comes from fat but it leaves out an extremely
important fact, which is, what PERCENTAGE of that product comes
from fat.  A consumer still has to calculate how much of a
product is fat.  I feel that is not only diabetic-unfriendly but
it's consumer-unfriendly.   People with diabetes have to watch
the fat content of the foods they eat just as much as they need
to watch the sugar content of these same foods.  I do not know if
you have ever calculated fat percentage but it is something I
feel a consumer should not have to do.  I feel this is something
which should be available to consumers in the nutritional
information printed on your products.
 
The words "sugar and other natural ingredients", and other like
phrases are not helpful to a person with diabetes attempting to
construct their meal plan.  While sugar is considered a "natural
ingredient" to most non-diabetics, to a diabetic any hidden
sugars can jeopardize their diabetes management plans which in
turn, jeopardizes their lives.
 
Food exchanges are not only a daily part of the meal planning of
a person with diabetes.  There are also millions of other people
who use food exchange values to decide what foods they will eat.
Including food exchange values in the nutritional labeling on
your products is not only showing that you're conscious of the
people with diabetes buying your products but it will also bring
new business to your company.  If I have to choose between a
product which gives me food exchange values (and the other
information listed in this letter) and one that doesn't, I'm
going to buy the product that gives me the information I need,
which includes food exchange values.
 
It is a known fact that high blood sugars lead to many diabetic
complications including blindness, kidney damage, and a long list
of other complications.  Not knowing the fat content of a food,
that a food has hidden sugars, or not knowing the exchange values
of a certain food does nothing but cause difficulty for people
with diabetes and to the millions of other health conscious
consumers in America.
 
One of the tools for the management of diabetes is the
information on the labels of products they consume.  Why not have
this much needed information on your product labels?  Your
company will only benefit from becoming a market leader. There
are millions of people with diabetes who can benefit greatly from
the improvements mentioned above.  The goodwill and additional
sales generated will be an added bonus.  It will give me a better
choice when I make my decisions on how to spend my money when I
go supermarket shopping.
 
(Also, please add any of your own personal views and opinions)
 
 
We urge you to join us in voicing our concerns about misleading
and dangerous labeling practices by U.S. food manufacturers and
to lead them into "diabetic friendly" products.
 
****************************
If you'd like to send a comment or question to DFAN send it to:
BELVE (Delphi), BELVE@DELPHI.COM (Internet), XJMV62A (Prodigy),
YASURU (Delphi), SO RANGER (America Online), WXUD99B (Prodigy)
If you'd like information on how to join DFAN's online support
group just drop us an e-mail and we'll tell you how to join and
get FIVE FREE hours so you can look around and see if you like
it.
*************************************

There are five other issues of the DFAN Online Newsletter
available.  If you'd like to receive any of them just send us an
e-mail (BELVE@DELPHI.COM or YASURU@DELPHI.COM) and we can send it
to your e-mail box.  Or stop by our forum on Delphi (Custom Forum
255).  Here are the other issues that are now available for
upload.

Fall Edition: DFAN Online * Official Flower Seeds * Article - The
First Day/Diagnosis * Article - A Mother's Dilemma * DFAN
Hottub/Biographies

February Edition: Article - Good Old Days/Part 2 * Article -
Coping As An SO (Significant Other) * Article - The Joy Of A
Transplant * Member To Member Advice * Article - Sorbitol/Is The
Harm Worth The Benefit

March Edition (Special Children's Edition): Interview With Ten
Year Old Diabetic Child * Article - D* At School/Time Of
Diagnosis * Article - Getting Ready For School Beyond Notebooks &
Erasers * Wordsearch Puzzle

May Edition: (Special Significant Other Edition): Looking At The
Glass Half Empty Or Half Full *  S.O.B's (Significant Other
Brothers) * Poem - "The Lesson Needed To Be Learned" * SO
Appreciation * Getting Involved * Meal Planning - The Key To
Success * Diabetes Mystery Story

June Edition: Article - Diabetes In Teens * Article - My Life
After Diabetes * Article - Who I Am * Article - All It Takes Is A
Little Time * Poll Results - Driver's License Suspension *
Article - Traveling With Diabetes * Diabetic Study Announcement *
Finish The Story - Tara's New Beginning

(This newsletter is e-mailed to everyone who visits our online
forum and to everyone who requests it.  If you would like to be
removed from this mailing list of if you'd like to receive any
back issue please send an e-mail to BELVE@DELPHI.COM or
YASURU@DELPHI.COM

