Tuesday, July 29, 2014

Things That Piss Me Off Tuesday - the all diabetes all the time edition

I'm just going to apologize in advance for this post. This series is ordinarily all about me ranting about the things going on in the world, sharing news stories, railing against injustices.

This week, my worldview is a little narrower. Not because there isn't a ton going on in the world, but because right now I'm finding that my focus is a little more local, a little more personal.

It's hard to worry too much about what is happening on the other side of the world when you have a kid going in for surgery. In moments like that, I've found that everything else that happens in the world all continues to happen. It doesn't need or require my involvement to continue. It doesn't require me to keep paying attention. It doesn't.

In those moments, I've found that I get so wrapped up in trying to wrangle health insurance companies and dealing with scheduling nightmares and finding providers and surgeons that suit our individual needs and doing it all within set parameters and deadlines. I get so caught up in that until the day arrives when surgery is scheduled and everything else in my world stops.

My perception of the world slows, it draws in closer, and all I can focus on is the clock ticking in the waiting room.

That's where I was yesterday.

Monday is ordinarily my most productive day, when I get the whole week laid out in terms of my writing and topics. I didn't do any of that.


Instead, I held the hand of my little girl and kissed her forehead and told her that everything was going to be just fine, quieting the voices in my head.

Consequently, this post isn't what it normally would be. And I might be "off" for the rest of the week.

Also, the surgery went well. It was an attempt to reset a broken nose. We will have to see how she heals.

After we got home from the hospital and rested a bit, we got ready to attend a wedding. (see the above mention of the scheduling nightmare...)

Sitting at our table, a couple that I'd never met, but one that we got along with splendidly. The antics of the kids entertained them, and I was immediately grateful that they'd parented four boys so they embraced us more than most people ever do.

At some point during the reception, I sat Little Boy down after asking him how he felt and took out his glucose meter, trying to be discreet about it. The gentleman on the other side of the table asked about it, asked if he was diabetic. My answer, the one I always give, the sorta but not quite yet, yes, no, maybe, probably. 

This limbo stuff. Man.

Anyhow, he expressed a compassion and empathy that I don't normally get from strangers who see me poking my kid with needles. He told me that he had recently been diagnosed Type 2, that he had a long family history of it, that everyone in his family seems to get it eventually, that he'd lost his mother fairly young and fairly quickly because of her unwillingness to try and control it.

Oh, the feels.

His mother was in her mid 70s when she died.

Mine was only 60.

And it's not fair.

We swapped stories like war veterans of the things we'd seen and what they went through and the constant frustrations of caring about someone who doesn't want to take care of themselves.

We sat there, this stranger and I, vowing that we would take better care of our own health because of what we had seen, what we had lived through, what we had lost. Who we had lost.

Then the conversation shifted to his wife. Her sister, now 70 years old, was diagnosed Type 1 at nine years old. She's still here, still kicking ass. We talked at length about how remarkable her life had been, how much harder this condition was to manage when she was diagnosed, how doctors hadn't expected her to survive the diagnosis period first, then childhood, and then and then and then...and she is still here.

It gave me so much hope.

The sister, unlike his mother and mine, understood that taking care of herself was not an option. It was required if she wanted to stay alive.

That's the thing about this disease, regardless of which form of it you deal with. Watching carbs and reading labels and being conscious of sugars and all that is required, not because we'd like to drop a few pounds or because we feel like being healthy today, but because we want to keep living.

We don't get cheat days or vacations or the luxury of indulgences. We don't just get to let ourselves go for a little while and then get back on the wagon because we could be doing organ damage.

We spoke for quite a bit about how it was a blessing and a curse that Little Boy was so young. He's been dealing with this almost two years now, and he's never known any different. To him, it's normal to get poked and have mom ask you how you are feeling and have her tell you to drink water. It's normal for there to be good days and bad days. It's normal for him to ask adults if he can eat something or not. It's normal for him to go trick or treating and then not eat most of the candy.

It's normal for him, but none of it is normal.

He just doesn't know it. Which is the blessing part. There isn't anything for him to adjust to...this is just the way it is.

We talked about how this woman's sister struggled as she went through her teenage years, and how those years tend to be a time of struggle for so many T1 kids. Rebellion is a part of being a teenager, but these kids have so much else going on. They just decide that they don't want to be diabetic one day, or that they aren't going to listen to mom and dad anymore about what to eat and what not to eat. They sneak things, they fight back...they do what teenagers are supposed to do, except that unlike all the other kids, these rebellions can land them in the ICU.

For a parent of a T1 kid, it's more than a little bit terrifying honestly.

This man on the other side of the table asked about my meter when I took it out. I told him that I was borderline Type 2, that my mom was probably only one of several people in the family with it, that I'd imagined that many people in the prior generation had it too but were never diagnosed, that I've had gestational every single time I have been pregnant, and that it has gotten worse every time.

More empathy.

I guess I am just jaded. To be in the presence of someone who actually "got it", who didn't shame us for these things we deal with, who didn't try to cure us with something that does nothing...it was nice. He wasn't just being nosy, he wasn't being rude, he wasn't being dismissive. He was commiserating.

He understood because he lives it.

Most doctors don't even understand what the personal reality of this disease is really like.

This disease is a big deal. It's all encompassing. It affects everything about your day. It affects what and when you eat, how you feel. It's overwhelming at times, and so few people understand.

I get people who try to tell me all the time that I need to just relax. That it's not a big deal. That "at least it's not ________" (insert any other condition in the world).

To all those people, I issue this challenge. Set a timer for 8 different times a day, one of which needs to be in the middle of the night. Poke yourself with needles. Count the carbs in everything you eat, keep track of all of it. Ignore hunger and eat when you are supposed to eat. Never make the mistake of leaving home without your meter and a source of fast acting carbs.

Do it just for one day, then tell me this disease isn't a big deal.

Get up and do it every single day...welcome to our lives. 

To those who understand, fistbumps of solidarity. xo

3 comments:

  1. I don't envy you or him the life he has ahead. Yes, thankfully this is all he's know, but again, this isn't something he should know. You wouldn't want him to know. I am just learning the Type 2 version of this, trying to cook for my SO who doesn't count anything...he thinks he's infallible. I personally want him around as we get gray and old and he can see his granddaughters get married etc. Kudos to you for being a mom who cares about her kids, and to him for not complaining about getting poked and prodded. I love reading your stuff everyday, who cares if this is a little more personal. Sometimes we need a little more personal, and sometimes that personal helps someone else pull their head up and say...hey, I need to do this.

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  2. I don't have any words of wisdom but I am sending you great, big, GIANT HUGS!!!!!!
    Most of the time, if something doesn't affect someone personally they just don't have the ability to empathize. Then they want to sound smart or helpful so they will tell you what their cousin's best friend's sister did and she was CURED. (Insert eye roll here.)
    My father has diabetes. He has to test several times a day. He has to give himself shots and take 2 different meds. No day is a normal day. He may wake up feeling one way and feel completely different in a couple of hours. You're right it IS a big deal, especially when it's your child.
    Just keep putting one foot in front of the other.
    More HUGS!!!!!!!!!

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