Ah, Life.

Life is so dangerous when you live with diabetes. 

It’s so dangerous it’s amazing we make it out of bed.  It’s so dangerous every time we take a shot or prick our fingers we might get an infection.  If we don’t we live in fear of long term complications.  If we need sugar we need it immediately or we could die. 

It’s dangerous.  It’s immediate need just on the other side of our consciousness at all times.

It’s scary.  It’s serious.  It’s a full time job without any breaks.  We count everything.  We don’t eat without thought.  If we do, we are living on the edge.

We need to have emergency supplies of quick sugars, emergency supplies of medication, extra medication in case the original supply gets too hot or too cold or randomly goes bad.  We need to carry emergency syringes in case our pump konks out.  We need to be within an hour of insulin at every moment of every day.

It’s dangerous.

It’s complicated, and it’s quiet. 

Living with danger.

 _______

I tell you; just writing the above few sentences exhausted me. 

I don’t deal well with articles or mentions or people who feel a need to highlight the dangers of hypoglycemia or the dangers of hyperglycemia or the dangers of whatever or the struggles we face every day.

I really don’t deal well with it at all.

I’m not saying I ignore any of the above dangers.  Yes, I know what could happen.  I also know what could happen when I cross the street or get on a plane. 

I just don’t agree with highlighting it all the time—we’ve all sat in a medical office and heard the lectures; we’ve read the articles; we’ve answered the questions. Heck; we all get into our cars multiple times every day despite the dangers involved.

When it comes to life with diabetes, we’ve felt most of those dangers, too.

And, amazingly enough, we’ve kept on keeping on. 

It isn’t the people living with diabetes who highlight those dangers, I don’t think.  It isn’t those of us who have felt what a blood glucose of 27 or 538 feels like.

We don’t need to mention it—we’ve felt it.

And I, for one, continue to keep on keeping on; doing my best every day to live my life.  With and without the danger attached to living with diabetes.  I can’t see it as “dangerous” when it’s my daily reality.

Maybe I should get myself a leather jacket and a Harley—I’m such a thrill seeker. What do you think?

So I learned recently (because I never looked it up or remembered before now) that you are a med student, then an intern, then a resident, then a fellow.  I’m sure there are a few more (HA!) steps involved, but super basically that’s it. 

This means that the fellow I saw last week at my doctor’s office has had at least 7 med-school years behind her.  And I must say that if she wants to work with patients with type one diabetes she probably should spend some more time learning before she goes one-on-one with a patient with type one.  She seemed like she had a lot to learn, despite knowing a lot of the calculations and science behind my pump readouts.

As we all know, it’s a lot to learn.  A LOT.  I’m sure for a physician it’s even more to learn than the rest of us!

(That doesn’t sound very fair, and that’s not how I intended that to sound: I don’t have any particular issue with her— but I was glad she isn’t my doctor.) 

For one thing, the fellow kept looking at my doctor for answers to her questions about my diabetes instead of looking and listening to ME. 

Yes, I am the rock star in the room at my own visit!

Which was fine; she hadn’t ever met me before and she was there working to learn from my doctor.  And, my doctor knows a lot about type one diabetes.

But then the two doctors started discussing my sensor.  Saying things like “a representative told me it didn’t work very well with pressure” that they thought would be a help for me to learn.  At that moment it really hit me like a ton of bricks in a crystallized vision I hadn’t seen with such clarity in a while.

They don’t understand what it’s like to live with diabetes. 

Really, truly, LIVE in the mundane, somewhat silly yet important ways that teach us something with every experience, every day.

Most of us with a sensor who has worn it on their hip and fallen asleep at 200 and woken 30 minutes later to a false “low” alarm knows that it doesn’t work when you’re sleeping directly on your sensor.  Any of us who have worn it underneath tights or (gah!) nylons and have been alerted to a false low can tell you: the sensors don’t like pressure.  (It makes sense, given that the sensor uses measurements from your interstitial fluid, that if your circulation of interstitial fluid is impeded by your body weight or by compressing clothing, that the sensor won’t work as it was designed.)

So the fact that neither of these women had worn a sensor for 3 days (ever, I imagine) seemed off to me.  If I was a physician and I could try something that might give me an insight into my patients’ daily life with their disease, I would like to think I’d try it out. 

Then again, what’s the point of wearing a sensor if your pancreas works?  They wouldn’t ever get an alarm, much less any of the 13 I got between 9:30pm and 5:00am last night.

Maybe it’s that I want to think my doctors WANT to know what it’s like to live with diabetes… which is kind of strange, as I tend to think I’d never wish diabetes on anyone. 

As we all know, life with diabetes takes a heck of a lot of knowledge and everyday teensy things that end up teaching us more and more. 

No matter how many years of school and training they put in, it’s beyond me why we consider our doctors the “experts” in diabetes.  Sure, they know a heck of a lot and are incredibly skilled and talented in their own right… but I have to consider myself the expert when it comes to my diabetes.

23 years of daily life is longer than any formal medical education, anyway.

I worry sometimes about most of us.  I worry because I think having diabetes is really difficult and I see people in the “spotlight” that is the internet and I don’t see their struggles as often as I feel my own.

It’s a little hard to describe.

I worry about the people who are lurking around reading blogs and tweets and random snippets of the lives of others with diabetes.  I worry they see the public successes of these few people and feel badly about themselves and their own diabetes.

It’s kind of a mess.

In a lot of ways, I say “congratulations” and “great job” to those people online.  To myself, I often say “oh crap.”

And I’d say I’m one fairly in tune with myself and my disease.  So I extra worry about those who may not be as accepting of the ups and downs of living with diabetes, or even of life in general.

I know people want to point to others as a way to show us we can do it.  Just look at Sue: she’s doing it!  Look at Joe: he’s doing it!  It’s possible!  But sometimes it doesn’t feel like encouragement. 

Sometimes it feels entirely different.

Since diabetes is such a personal disease and it matters who we each are, what we do, when we do it, what insulin or medications we take, what the weather is, how our immune system is working each day, what our hormones are doing, what we eat, etc that it is almost impossible to compare apples to apples. 

Yet the numbers we deal with (A1cs and regular BGs) are dangerously identical.  Dangerous to us because they promote a very simple comparison between our own numbers and the numbers of complete strangers.

Clearly, I haven’t solved how to tackle this issue in my own life or in the lives of others.  So I do what I can: I recognize it, I think about it, and I do my best for me and my life with diabetes.

And, I worry too.

I hope everyone is able to recognize that a tweet of a number doesn’t tell us a bit of a thing.  It tells us at one moment someone had a certain blood glucose reading.  Or, for one 2-3 month segment of time someone had a certain range. 

It certainly doesn’t tell us who they are or what they are about.

I wouldn’t want to be judged on my numbers alone and I don’t even want to meet anyone who would want to be judged solely on their numbers either.

There is just so much more to us, as people, than a number.

So I’m still going to worry, just for the record.  I’m going to keep worrying about the people who have determined they are either never diabetics or those who have determined they are always diabetics.  I am going to worry for those in denial in either direction, because we each have a lot of living to do and I don’t think anyone can really live when they are busy denying something as big as diabetes. 

I don’t want you to deny your disease, but I don’t want you to be consumed by it either.

We’ve got a whole figurative fruit basket comprising our identities.  Sure, we have apples and oranges, but I’m betting some of us have kumquats and kiwis and dragonfruits and starfruits and pineapples and even a few bananas and peaches, too.

(Or maybe we’re all fruit loops.  I’m not always sure!)