Archive for July, 2012

Things I Could Not Have Known

July 31st, 2012

A diabetes diagnosis at any age is overwhelming, to say the least!  When I was diagnosed at age 10, there were just so many things to learn. 

I wonder, though, what I might have thought if I had known then what I know now about my life with diabetes.  Some key things that, had I been able to hear them, I might have found comforting or useful:

  • You have an opportunity to grow, or to shrink. Right now.
  • You will rely on elementary school math like no one else.
  • You will become a great Diabetes Detective.
  • You will learn all foods available in your country, and some beyond your borders.
  • Nothing will work the exact same way again.  You just have to go with it.
  • Your mind and calculations will be a ribbon of thought never lost, never forgotten.
  • Your vocabulary will expand.
  • You will have an encyclopedic knowledge of what will and will not affect your blood sugar levels; these are things most don’t think about ever at all.
  • You will get to know your body better than any physician.
  • Textbooks will not help as much as you want them to help.
  • You will need to learn to speak up.
  • Time has changed now; minutes matter in new ways.
  • Go find other people with your disease.  You will need to laugh and cry and yell and scream with others who understand.
  • You will sometimes go to sleep with juice still in your mouth.
  • You will carry something all the time.
  • You will calculate and triangulate your days and activities every day.
  • You won’t really get a break. Ever.
  • There will be numbers you don’t understand.
  • You will learn who your friends are.
  • It doesn’t have to be awful.
  • You are stronger than you think you are.

I’m sure you have some words of wisdom about this, as well, when it comes to things you could not have known at diagnosis but certainly you do know now.  What are they?

It Isn’t That I’m Not Angry

July 30th, 2012

I don’t know what it means, but I don’t tend to get mad at my insulin. Or my pump. I do get irritated by my CGM, though, like I would by some loud little brother who Won’t. Shut. Up.

Anyway, I tend not to get angry at my diabetes. I just don’t. I’m simply not angry with my pancreas for failing to withstand the onslaught of self destruction 25 years ago.

What purpose would any of that serve?

Is it that I’m too pragmatic to feel anger is useful? Is it that I’m just so relieved to not be as afraid as I was for so long? Was I in denial and didn’t know I was angry in high school, so now the whole concept of going anywhere near any of that is exhausting?

Probably a little of all of those.

I AM angry at the thousands of medical professionals and marketing campaigns and diabetes organizations who portray diabetes as something we all “suffer” with and are “debilitated” by. I’m angry that it feels they are using fear as a motivator to either sell products, encourage compliance, or generate sympathy.

When I asked Diabetes Outside Facebook fans a number of months ago if they wanted pity or respect when it came to their lives with diabetes, no one said they wanted pity.

So why are companies skewing the reality of life with diabetes and thus encouraging these notions of diabetes as terrible and overwhelming?

Well, actually, I don’t care what advertisers do; I understand their goals are different than mine. But the medical profession?! Come on.

When a toddler falls down, the smarter adult will check the kid out from a bit of a distance before making a big fuss—if it’s just a tumble, the toddler will make a huge fuss if the adult does so first.  They watch us to learn how they are supposed to react.  I think it’s the same way with a diabetes diagnosis.  It’s difficult, and we will for sure have bumps and bruises along the way, but being frightened by a medical professional sharing needless horror stories is just not the best way to get through every day with this disease.

When it comes to those of us completely overwhelmed by our diagnosis and our daily lives with diabetes, I say: you can do this.  It will help if you find professionals who treat you the way you deserve to be treated—with respect, and with understanding, but without condescension. 

We all had lives before we were diagnosed that we want and need to continue.  That we should and can continue.

We now just take our diabetes along for the ride.

I Can’t Get Over How Lucky We Are

July 27th, 2012

I don’t see enough gratitude around here when it comes to life with diabetes these days.  I mean it; thirty years ago we were better off than thirty years before that, and thirty years before that (1922) a diabetes diagnosis was a death sentence for almost all patients.  Why are so many people missing this?

Today, we aren’t so much patients as we are amazing individuals capable of and doing amazing things.  We have little teensy blood glucose monitors that we are encouraged to use—not test tubes or urine strips with 40 mg/dL ranges.  The teensiest one I’ve seen is about the size of a watch—no joking. 

We are so lucky right now, today!

I use tools that most people can’t see when they meet me, which enables me to choose how much I involve others in my disease.  I am strong and fit.  I have a great education.  I have had absolutely amazing experiences in the world.

I credit much of this to my diabetes, and particularly to being diagnosed when I was.

Insulin pumps went from something sick people lugged around on a cart to something on my waistband frequently mistaken for a pager or garage door opener (yeah; that’s my favorite one) that I run marathons with. 

I wear a little gadget that tells me and shows me what it thinks my blood glucose levels are 24 hours of the day.  If he’s irritating me, I can turn him off or tell him to shut up for a few hours.

Absolutely amazing, AMAZING tools when you think about it.

I don’t want to get too Pollyanna on you, here, because of course I’m still mildly irritated that my insulin doesn’t work quickly enough to tackle some foods appropriately, and I’d love a fail-proof catheter for my insulin pump.  I’d love to never wake up with my tongue telling me I’m way past 250 and have a long morning ahead of me.  I’d love to eradicate my dawn phenomenon that means my insulin needs are about twice as much from 8a-noon than they are the remainder of the day.  I mean, I’m a picky demanding type one—I have a list of what I want to see. 

I don’t focus on the things on that list, though.  I’m too busy making my life what I want it to be.

And, if I never get any of those things (many of which I really think are just a matter of time), I’m still way ahead of those who went before me, each of whom were and are pretty amazing in their own rights.  I’m way ahead of people whose bodies work without them thinking about it—because I don’t think they truly value what they have, or what they are capable of.

I’m a type one diabetic in 2012 and I have the world at my fingertips, just waiting for me to reach out.  Pretty cool.

World of Difference

July 26th, 2012

I spent a fantastic four days with 12 other type one athletes last week at the Ragnar Northwest Passage. It reminded me a little bit of being up at camp, plus fifteen years.  (I know; I had to do the math a number of times… fifteen years feels like yesterday!)

I really enjoy the fact that when we get together, diabetes is not as forefront of a topic as one might think.  We pretty much share what type of insulin delivery/monitoring we do (Pump? Syringes? Pen?) and which brands we like and why, and then sometimes how old we were at diagnosis.  Pretty much after that there isn’t that much to say…(unless you want to discuss whether you are a diabetic or a person with diabetes…)

I sort of like that.

We did discuss how so many of us are control freaks/type A personalities.  One woman captured it well when she said we are so used to Being In Charge to protect ourselves it’s sort of now how we operate.  Yet in a group of other type ones, we all sort of did our own thing to take care of ourselves and let the rest go.  Insulindependence did a fabulous job acknowledging that in subtle ways: they sent us the itinerary, discussed and gave links to restaurants we planned to visit, told us how long the drives were scheduled to take.

Little things like that that we so rarely get without scrambling after in our daily lives spent with non-diabetics who don’t have to think about this stuff.

Which, I believe, do not end up being little things at all when you add them together, day after day, for decades.  It’s one of the things I think can wear us down when we live with diabetes.

I don’t have many words of wisdom beyond these: one way to take care of yourself and your life with diabetes (or your diabetic life, take your pick) is to spend some time with other people who care about these same seemingly small things. 

It will do you a world of good.

I don’t mean get together and complain about anything: I mean get together to DO something—whether it be making a meal or taking a walk or going fishing or golfing or shoot running 200 miles—but do it with people who have similar thoughts running silently and relentlessly through their brains.

It’s very nice to know and truly feel you aren’t the only one.  Very nice.

(Many thanks to insulindependence and my team!!)