I don’t read a lot of other blogs—diabetes-related or others—but I have been more interested in them as I continue to write my own.

One thing I see on nearly every other diabetes blog is something I thought about before starting Diabetes Outside’s blog: posting my latest meter reading or yesterday’s blood glucose numbers.

I opted against doing it, and when I see it on other blogs I know why it isn’t for me.

It’s the same reason I never answer the question “how are you?” or “how was your day?” with a number.  It’s just a number; and a random, relatively imprecise one at that.  (Meters can be up to 20%+/- of an accepted lab result to be considered accurate.)

But more than the randomness of a number, it would seem to me to heighten the importance of my diabetes if I equate my emotional status with a number day in and day out.

Don’t get me wrong; I absolutely will answer by saying: “I feel like crap; I’ve been over 300 all afternoon” or “I’m exhausted I was 43 and now I’m 245 30 minutes later” or what have you.  It’s the response of simply “I’m 180” or “I’m 120” that gets me.

Think about when you were in school and being graded.  Think about getting a grade in every subject several times every day.  Would you want to answer the “how are you?” question by saying “C” or “B” or even “A”? 

I hope not.

I have my own emotions separate and distinct from my blood glucose.  Sure, I get irritable and uncomfortable and exhausted and desperate with different levels of sugar in my blood stream.  But that isn’t who I am.

I don’t let my diabetes define me.  I never have—and after seeing the picture of what I used to imagine diabetes looked like in my world, I’m very glad I skipped any definition as I’m sure it would have had devastating results.  It works for me to know that I’m me and any number that comes after it is properly in its place: AFTER. 

Me first.

If I didn’t have that, I would feel like my diabetes had won. 

I’m not going to let it win like that—at least not without a very good fight—because I am worth more than any random number that pops up after five seconds. 

I cannot express how much I hope you feel the same for yourself.

I was reading a FaceBook page about diabetes and they posed the question: what food do you miss most since you were diagnosed with diabetes?

Hmm.

This question confuses me.

First of all, this particular site shall remain nameless since I’m about to be critical.  Most of their questions seem to focus on what I would say are the more negative side of living with diabetes: what do you miss, what is the hardest, how often do you want to curl up in a ball and cry kinds of questions.  These are all good questions that facilitate camaraderie and discussion, but it doesn’t often work for me and they have a LOT of these questions; I’m not sure many positive things result from this type of camaraderie.

Secondly, to me this may be a question for people with type two diabetes and not type one.  I expect type two diabetics need to mold their eating choices to fit the disease more so than type ones need to in an effort to keep their bodies working at maximum insulin efficiency.  Type ones have zero insulin efficiency on our own, so we need only try to keep our blood sugar levels even and in range.  (Also incredibly difficult, just in different ways and for different reasons.)  Limiting or managing how many quickly-absorbed carbohydrates is one of the best ways to do this, and since candy is a “quick carb” it usually is better managed than, say, a carrot.  (Although both have carbs and both need management.)

Reading the answers, though, it seems like a lot of type ones answer with what a person not well versed in living with diabetes would expect: “my daughter misses eating candy” and “I miss those sugar straws” and so on.  One particular answer was “I miss almost everything.”

Alright.  Here’s where I need to climb on my box yet again: 

IS THIS A PITY PARTY, OR IS THIS YOUR LIFE?  YOU DECIDE.

Yes, there is absolutely a time to feel sorry for your loss.  Of course you miss the now-rose-tinted carefree days where the word “carbohydrate” didn’t mean anything to you and certainly didn’t strike fear in your heart.  Of course you need to eat differently after you have been diagnosed with diabetes—either type.  Of course your food life was simpler then.

But to say that you have nothing now, no options, you miss everything, your world is over… that smacks of a temper tantrum to me: high drama, little reality.

There are ways to eat anything you want to eat when you live with diabetes—yes, the ways you used to eat without thought are gone forever, but that doesn’t mean you need to not eat something in particular ever again.  If I have an undeniable craving for a Coke Slurpee, I can figure out a way to make it work.  I don’t have to miss a thing.

I know I’d rather figure out how to make something work than throw myself on the floor and cry. 

I hope you agree.

I promise I’ll get off my numerous soapboxes.  (After today, I mean.)  And this one I suspect is a little bit preaching to the choir, yet my fingers are itching to write this again:

I want a different name.

I’m trying to figure out how to explain this desire.  I wonder if natural blondes feel similarly when a bottle- bleached platinum blonde stands next to them and whines about blondes not getting any respect?

Or something.  I don’t know.

I just know I want a different name.

I don’t want to ever hear someone ask me if I eat cinnamon because cinnamon is supposed to cure diabetes.  Or blueberries or the latest wack-a-fruit found in the Amazon.  I want to never see that question on someone’s face that starts with “but you aren’t overweight.”  I want my inbox to never contain email about preventing diabetes.  Or prediabetes.

Just give me a new name.  Please.

Is it because I never had the chance to prevent my diabetes?  Or is it because I spend quite a bit of time explaining my disease to others who think it’s the other kind of diabetes?  Do I feel like some sort of victim of the media’s mass marketing of the solitary word “diabetes” to mean something that does not apply to me?  Or is it that I’m offended by the condescension I read into messages from the American Diabetes Association, who I would have thought understood me?  Or am I sad my body destroyed a portion of itself decades ago and can’t believe anyone could be so complacent to knowingly let a similar thing happen in their own body?  Am I bitter that I don’t ever have the chance to reverse or improve my diabetes?

Probably a little bit of all of those.  I don’t know.

I just know I want a new name.

Not a new type.  Not a new term.  Not a new prefix or suffix.  No anagrams.  No new rhyming jingle that works on a bracelet or bumper sticker.  Nope, I don’t need any of those.

I just want a new name, and I think I deserve it.

Out of all of the things about living with type one diabetes I deal with every day as I sleep, wake, eat, breathe, work, dream, move, cry, laugh, and think, THIS is the one I think I really would like one hundred percent.  No conditions, no complications, no pills, no lab work, no trials.  Just a new name.

I’m ready.

Are you?

I admit it—I don’t understand what point all the anger is supposed to serve for people living and dealing with diabetes.

I’m not at all saying that I don’t get or have never been angry about having diabetes—that would be a lie—I just don’t spend much time in that mental space quite simply because being there exhausts me and it rarely gives me anything in return.

Sadness, sure.  Frustration, sure.  Confusion, sure.  But anger, just not that much. 

I read an old blog post from Parenting Diabetic Kids this morning where they listed the Top Ten Things the parents hate to hear.  Mainly it was what you might expect from a loved one forced to give a little one a shot or finger stick, and who is concerned with lows and highs. 

It was the unadulterated anger when faced with comments from others about sugar, what the kids can eat, how they got the disease, unknowing comments and related assumptions there is only one type of diabetes that concern me.  One of the comments in response to someone learning a child has diabetes that topped the list was “at least it’s not cancer.”  The response from many parents to this comment alone was less than gracious.

It was rather startling and I wonder how they make it through the day with all that anger inside and leaking out when they have to also deal with diabetes.

I’m not saying I don’t understand these frustrations.  What I don’t understand is the repeated messages I see online and have seen over the years in “support groups” for people with diabetes.  I don’t understand how so many can “live” so long in such an angry space.

And of course it isn’t just the parents or caregivers I’m talking about.  I meet many people with diabetes who were diagnosed forty years ago and still live with pure anger about it every day.

I think diabetes is a really hard thing to live with.  I think type one diabetes is crazy hard to balance, and I can’t imagine how it is to deal with the rather limited tools and restrictions imposed on people with type two.  I understand that these difficulties can be opportunities to spur more research and education about ways to remove the harmful eventualities of the disease progression and new methods and new medications.  I’m all for that.

Maybe I just get confused because I wonder what guarantees anyone thought were waiting for them in life?  I look around and see so many terrible things happening in the world and I look down at my digital pump and its sterile infusion set and my fancy insulin and get my blood sugar result in 5 seconds and I just wonder: what does all the anger do for anyone?

I do want to applaud one comment I read from someone who has two family members with type one.  I think she gets what it is like, even if her own pancreas works, to live with the constant checks.

My husband and daughter are both diabetic and we always get these comments. But I have to say I agree with the “at least it’s not cancer”. There were kids in hospital when [my daughter] was diagnosed at age 2 last year, who were dying – of cancer or other diseases. Those parents were losing their kids. My husband’s colleague had a 2-year-old boy diagnosed with MD a few years ago. That family watched their child die and there was NOTHING they could do about it. At least [my daughter] has a pump and a blood meter! I’m not going to lose my kid. OK she’ll face physical problems and many emotional issues but with the help and support of her family and friends she can get through them and lead a normal life. My friend’s little girl is highly allergic to a number of foods and can actually eat less at parties than [my daughter] can. If she eats the wrong thing she might die immediately. I think I’d be far more scared about that! We’ve all got challenges to deal with in life, and our job is to get on with them and help our kids lead as normal a life as possible. And who knows, dealing with diabetes might just make them stronger, healthier adults. I have certainly learned a lot and grown up a lot in the last 15 months since [my daughter’s] diagnosis, even though my husband has been Type 1 for nearly 10 years now. He has learned a lot too. Hang in there, keep smiling and keep raising awareness!