Wednesday, July 30, 2014

The Diabetes Registry/The Diabetes Shower

I’m trying to create a wedding registry, which is hard when you have lived together for ten years, have a tiny city apartment, and need less, rather than more, stuff. Thinking of consumables and stuff I actually needed, I clicked around Amazon, and suddenly found myself looking at pages of glucose tablets. There was even a case of them.

Could I…could I register for glucose tablets? That would be weird, right? I probably shouldn’t do that.

Then I started thinking: you have a wedding registry, to start a life and home together.

You have a baby registry, to come together as “a village” to raise a child.

Where’s the diabetes registry?

When you’re diagnosed with diabetes, you suddenly find yourself facing a life of needing a ton of stuff to stay alive, all of it costly. Sure, insurance (if you’ve got it) pays for some of it, but it’s amazing how big of a hole can be burned through your pocket at the end of the day (or month). Making such a big financial commitment is, in some ways (particularly in a country without socialized medicine), almost like taking on a baby, in that it’s expensive, capricious, unpredictable, you can’t leave it alone for a second, and it will probably need plenty of medical care. Even though diabetes isn’t a choice like marriage or a baby, unlike the former, it will be with you ‘til death do us part. (Don’t listen to the people who give it five years. They have all been wrong so far.) Even with a baby, you’re only legally obligated to provide money and care for 18 years. I will hit that milestone with my diabetes in March, and I will only be 30.

So my proposal is, with every diagnosis should come a diabetes registry and a diabetes shower. You can eat cupcakes and drink wine (depending on your age), and talk about what you’re going to do on your honeymoon and what you’ll do when it’s over.

There’s no shortage of stupid games you can play. “Guess the carbs on the plate.” “Pin the test strip on the meter.” “Wrap the diagnosee in pump tubing.”  “Label all the items in the D-kit.” “Lancet quick-change.” “Can you eat that?” is an easy one, because the answer is always yes, except for the poison.

Instead of giving you advice on marriage or babies, everyone can give the guest of honour one piece of unsolicited diabetes care advice, with the knowledge that it’s his or her last chance to ever do so.

Gifts would be deeply appreciated, and everyone could ooh and aah over the various baskets as they were opened:
  • A number of sharps containers
  • A crate of glucose tablets
  • An economy pack of insulin
  • Pharmacy gift certificates
  • Pump supplies to last a months, two months, or more, or insulin pen needles
  • A “Calorie King” carb-counting book, or other
  • Diabetes apps for your phone
  • An exercise club membership (packaged with juice boxes)
  • A case of Diet Coke
  • A “cake” made of bandages, wipes, and syringes
  • One month’s insurance premium
  • Batteries. So many batteries. AAs and As, and lithium.
  • An assortment of pump skins, for the fashion-forward
  • Gift certificates for healthier groceries
  • A bouquet of test strips
  • Coupons for “sick days,” where others will demand nothing of you and help you feel better
  • A pack of DOC-penned books
  • A Blunt Lancet CD
  • Tickets to FFL or another D-conference
  • Blue-circle jewelry and wrapping paper
  • Medic Alert bracelet
  • Coupons for “at-risk” specialists and co-morbidities
  • Comedy gift: 100 lancets (enough for the rest of your life) 
…well, you get the idea. All lovingly wrapped and presented for the adventure ahead. Stories would be told, love would be shared, and a few tears would probably be shed.

Perhaps it could even be a celebration of life and possibility.

Monday, July 21, 2014

D-Blog Check Day: Connect / #ShowMeYourPump

Hi all! Today (well, July 22nd) is #dblogcheck day, so I figured I should fight the summer laziness and check in (that is, post). It actually hasn't been a lazy summer; I'm teaching five class sessions a week to 130 students, I saw 36 plays in 12 days, and I've been socializing like mad, along with prepping for one of the biggest events of my life, but D-Block Check Day is worth stopping for. D-Blog Check Day is a day where we learn how many people we actually reach with our words. Many of us read blogs and, even if moved, never comment. Perhaps it feels intrusive, or time-consuming, or removes a layer of anonymity. The purpose of blogs, however, isn't only to work things out for ourselves on the page (though that is a large part of it - blog as therapy); it's to connect with others, to hear an "it's going to be okay," or a "me too." This day encourages us to step forward and be counted.

I used to have a very involved, nearly daily blog, through undergrad and most of grad school. It was over at LiveJournal, if anyone remembers that. Now, Facebook and Twitter have taken over the world of connection (so instant! So many "likes"!), and the LJ world has dwindled to the point where it's hard to convince myself to put in the effort to chronicle my life. I'm not disparaging Facebook, and I kind of wish there was a "like" function on this blog; after all, what's an easier way to "check in"? Most of us don't remember to comment day-to-day, which is why we have this event. However, LiveJournal seemed more permanent, less ephemeral in its own way, which is a strange thing to say about two websites that both essentially exist in the ether.

When I go back to my college years, I see them in full. Highlights, of course, but much less carefully curated. I see events and whole conversations reproduced. I cringe at my emotional meltdowns, but I laugh and admire the passion and creativity that I and my friends brought to each others' worlds. My blog, my life, my feelings were open to the world, for better or for worse. (Now, the journal is locked to "friends-only," so it's a bit of a time capsule.)

Why am I telling you this? I'm talking about connections and the importance of reaching out. Almost a year into my LJ blog, more than ten years ago, someone who I'd never met reached out to me. He was moved by what I'd written. A friend of a friend, he had never been introduced to me, but we would both be on campus in the coming fall. He felt like he knew me, a bit, after reading my writing. He wanted to get to know me more. He commented more. We started talking. We took a chance, and met after moving in to our sophomore dorms.

And we're getting married in six weeks.

So connect. Connect. Reach out. You never know what will happen.


The new Miss Idaho, Sierra Sandison, has certainly gotten people around the world to connect lately. She decided to be bold and wear her pump visibly clipped to her swimsuit during the pageant, while worrying what people would think. She won, is what they thought. She has started a hashtag, #showmeyourpump, to encourage others to be "out and proud" when it comes to wearing a medical device. This stirred up all sorts of thoughts for me. The first thought is that I have come a long way from when I refused to even consider wearing a pump. I have such better control with a pump that part of me berates myself for not getting one earlier, but I wasn't ready until...I was. Forcing myself to be "tied down" to a pump when I would have resented it might have been an even bigger disaster than waiting to get it in the first place. It was the people who connected with me (that word again), online and in person, who even convinced me to give it a try.

Now I'm out, as far as pump-wearing is concerned. I blog. I'm proud, even though the pump still makes me question my fragility, my femininity, and my desirability. Sometimes it is still claustrophobic, even when you're out in the open. The questions arise: what does this attachment say about me? What do people see when they see it; do they think I'm taking charge, or that I'm less of a person? (Most probably think it's a pager and I'm a time traveller from 1995.) I'm not shy about my pump, but often I don't deliberately display it. Therefore, I find myself asking: am I proud enough? Do I show enough?

A friend of mine and I had a conversation on FB (the LJ replacement) about what showing or not showing your pump means. I'm glad we did, because it clarified a few things for me. Here's how my side of the conversation went:

I wear a lot of dresses, so it's actually hard to show my pump without tearing it through the dress or clipping it to the neckline and dragging the front of the dress off. I usually put it inside the waistband of my pants, too. Otherwise, though, I'm not shy about it (though I realize that seems like a big "otherwise"). When I'm wearing a dress (see: every day for the past month), what that means is that I am "hiding" my pump to avoid breaking the line of the dress. I still want to be pretty. Does the pump mean I feel I'm not pretty, though, and is that why I hide it, or is it just a fashion consideration? As much as, for example, diabetes will be evident and a part of my wedding, I'm not going to clip my pump to the top of my strapless dress. Does that mean I'm letting down the side, so to speak? Am I playing off shame as a fashion crime? (Is it a crime?) Ultimately, there will always be that frustration with diabetes, that frustration with bodily failure, that will in some way shape how I feel when I look at my pump. Of course, if I looked like Miss Idaho, I might feel differently.

Ultimately, I don't think that we should feel like we "have" to show our pumps at all times, or that we are letting down the cause if we don't, because that's as much of a trap, a pressure, as the pressure to hide. It's like running a marathon: you shouldn't let diabetes stop you if you really want to do it, but you shouldn't feel like you have to do it just to prove you can. However, I unabashedly love the #showmeyourpump campaign, because it provides a safe and open space; it might sound like a command, but it's really just an invitation, and one we can respond to in our own time.

So, when I wear a dress, it's both a practicality and aesthetic choice for me, and for the most part, shame isn't a factor (shame is when it starts buzzing No Delivery under my dress two minutes into an hour-long Fringe play). A pump lets me wear a dress without it being obtrusive, even something relatively tight and clingy, which is one of the awesome things about the pump - it doesn't have to be front and centre all the time. So, when it's easier for what I want to wear, I hide it. If it's convenient for me, I show it. Not letting diabetes completely control you, to me, means that I get to choose when I want to make a statement and when I don't. No shame, and no pressure from others either way. I do, however, think it's a good idea to occasionally have that reflection and ask those questions, just in case there's something deeper under the reason of convenience.

Having said all that, it's about time I showed you my pump.

Is that an insulin pump in your hand, or am I just happy to see you?

Yes, yes I am.