I sat down this afternoon at my computer with my highlighted article in my hand, ready to write about a concept new to me about evolution
and body weight and insulin resistance.

But then I opened Facebook, and the JDRF Bay Area had a link to an Op/Ed article written by a former JDRF advocate and published in the San Francisco Chronicle, and I got sidetracked.

It was the headline that hit me wrong.

“Lives Wasted as FDA Stalls on Artificial Pancreas Technology”

Let me say first off that I understand that this author is advocating for funding for research on type one diabetes.  I understand that advocacy before Congress requires highly charged vehement pleas, essentially, for money.  For that, people have to care about the goal
you have and have to want to help.

But here’s the thing that’s hitting me wrong about the entire article, and a lot of the pleas some of these research and other groups are required to adopt in order to wrestle sufficient funds out of others’ hands.  It’s not only the MESSAGE; it’s the tone.  They are discussing my disease, you know.

MY life isn’t being wasted.  MY diabetes isn’t the “constant, frightening, deceptive and malicious” one this author discusses her daughter lives with every day.

My friends with diabetes aren’t wasting their lives, either: they are nurses, teachers, mothers, scientists, engineers, dieticians, social workers, authors, attorneys, students, photographers, volunteers, artists, and more.  They are amazing and normal people who are busy improving their worlds as they live with their diabetes.

If I were waiting around on the latest “breathe into a tube instead of prick your finger” machine, or hoping for a pancreas transplant, or if I spent any time at all hoping for a cure; those things would make me feel like I were wasting my life.

Not one of us will get out of this alive, you know.  We don’t get guarantees.  We only get the here and the immediate right now today.
Sure, we need to plan and learn and dream and work and play and appreciate and share and do our very best as often as we can—but I for one think we have no time available for wasting.

(I also think that any death due to low blood glucose levels is horrible and think the only thing possibly more terrible is the thought that
someone might say that it was a “wasted” life.)

I’m clearly not the best Drama Queen when it comes to what it takes to live well with diabetes.  The author says “every hour of every day, individuals with type 1 diabetes have to balance insulin, food and activity to try to prevent low and high blood sugars, and the devastating and costly complications: seizures, comas, kidney failure, heart disease, blindness and amputations.”

Balance: yes.

Prevent: yes.

Devastating: really?!

Costly: alright; I’ll give her that.

Seizures: haven’t had one.

Comas: haven’t experienced one.

Kidney failure: haven’t had any.

Heart disease: not planning on it.

Blindness: none I can see in my future.

Amputations: ticklish as a schoolgirl.

So who is this lady talking about in her article?  What is she telling Congress?  Who do the SF Chronicle readers now think I, as a type one diabetic, am?  How many of them have I already met?

How many will I run past during Sunday’s marathon through San Francisco?

Will they see me as devastated, tragic, or doomed?

I can’t help but think of Bill Polonsky’s speech starter: Well-[managed] Diabetes is the Leading Cause of… Nothing!

If you’re waiting for the Big Bad Diabetes Wolf to come and get you, you may very well have a very long time to wait.  Don’t waste that time.

Go out and get living.

I think some people are afraid of their blood glucose meters.  I think that fear needs to be eliminated because it makes diabetes too big and powerful—you have given it permission to dictate your emotions.

If you were trying to lose weight, you would emotionally not fare as well by stepping on the scale every day as you would by stepping on it only once a week.

Yet blood glucose readings need to be taken several times a day, without fail.

The more we can do to minimize emotions with the task, the better off we will be when it comes to the emotional side of life with diabetes.

So try this on for size.  You can do it with someone else in the room or not—you can say it under your breath.  But speak loud enough that YOU CAN HEAR YOURSELF say it.  Heck, you can be in a closet in the dark for all it matters—you just need to be able to read the screen.

Start the sentence when your meter has 2 seconds left.  That way you’ll have already started before any BG number appears on the screen and you’ll be more likely to finish the sentence.

It has two parts.  Each recognizes the PURPOSE behind checking blood glucose levels.  You need to (a) know the reading because it (b) helps you decide what to do next.

So, with 2 seconds left before the meter is finished, start saying MY METER SAYS MY BLOOD GLUCOSE LEVEL IS [fill in the reading].  THAT MEANS I NEED TO [complete the sentence].

For example, when I got back from my run yesterday I checked and said aloud: My meter says my blood glucose is 158.  That
means I need to enter the number into my pump and have the bolus wizard tell me if I need to bolus to bring down the number.

It’s kind of funky to hear it out loud.  But very good training for keeping things in perspective about why we do what we do when it comes to blood glucose management.

Rock on.

I really really don’t want this one to sound preachy.  So if it feels that way
to you, please accept my apologies.  I just really believe in this one.

I think one of the most important ways we can improve our lives with diabetes (type one or type two or one of the other four unnumbered types) is by taking charge of our medical care.

From the mental side of things to the physical side, there are about three kazillion things we think about all day and night every day when we live with diabetes.

So why do we allow things we CAN do something about to languish and fester and eat at us?  One thing I try and do all the time is to identify my biggest stressor and do what I can to get rid of it.

If that includes my medical care, you can bet I’m going to make some changes. It is so much easier to fix something like that than it is to work to lower my A1c it just makes sense to do the easy stuff first.

Deal With Your Doctor/CDE Situation

If you feel your doctor or CDE is judging you, there are hundreds of other doctors out there who might not.  Check with your insurance, Yelp the covered people, ask around.  Find someone you can be comfortable with most of the time. 

If you are incredibly anxious when you have an upcoming appointment, when you next see your doctor or CDE, tell them that.  Talk about how it feels for you to sit there for an hour and nitpick what you’ve done every day for the past few weeks.  Maybe they need a wakeup call, too, about what it’s like.

If you aren’t sure why your doctor is suggesting a treatment or drug or avoiding it with you, find out why they are making the choices they make for your body.

Heck, they ask us why we go high and low and what we eat and yaddah yah; it’s perfectly appropriate for YOU to ask THEM why they are doing something with your health.

It’s a responsibility you have when you inhabit your body: you need to know what’s going on when someone else is making changes (or not). 

The thing about living with diabetes: you are the expert on YOUR BODY and YOUR DISEASE.  Sure, they went to medical school and see a
lot of people with diabetes and they know a lot about the science involved… but the one thing they don’t know is one of the most crucial when it comes to life with diabetes: they don’t know YOUR body
like you do (from the inside!).

And that’s as it should be: if it were something simple enough like a broken bone, you’d see them, they’d fix it, and you’d go on your way.  But
with diabetes, there isn’t anything you can point to.  It involves a lot more communication and a lot more thought and a lot more trial and error.

So if your medical team isn’t up to snuff, take charge. 

You owe it to yourself.