(Got a text message from one of the JDRF staff asking if I had seen the plaque when I was in the office for the last volunteer meeting. I hadn’t, so of course I had to stop by on the way home from work today.)
I have a super-human ability for spotting insulin pump tubing among headphone cords and blood glucose meter cases among wallets and I like talking to people about diabetes, so when I saw the infamous black case I knew I had to start a conversation.
“How did you know?”
“I have it too.”
He shared a little about his recent blood sugar results and the blurry vision he gets when his blood sugar is too high. We talked about the frustration he feels when he is wait for his numbers to come back down.
He told me he wished that he had known about his family history with diabetes sooner because he would have made different choices so he wouldn’t be facing the battle he is now.
It doesn’t really matter what type of diabetes a person has, a lot of the feelings and actions are the same. I don’t get blurry vision when my blood sugar is high, but my body definitely lets me know in other ways that it is unhappy. I also get really frustrated when I wait for a stubborn blood sugar to come back down. I do have the “benefit” of insulin to speed up the process, but I understand the feeling.
Towards the end of our brief conversation, my new friend with diabetes told me about his most recent A1c result and that his doctor had told him that as long as he stays in that range he doesn’t have to take insulin. He mentioned someone else he knows who has diabetes “really bad” and has to take shots. My friend shared that he is really trying to make the right decisions because he doesn’t want that to happen to him.
There is a lot that I don’t know or don’t understand about type 2 diabetes, but I have picked up a few important pieces of knowledge from being a part of the greater diabetes community. One of those things that I’ve learned is that type 2 diabetes is a progressive disease. There is a good chance that eventually his pancreas will get burned out and need a little assistance in its insulin supply from an outside source. I shared what little I knew about the progression, and shortly after that we both had to get back to our tasks.
There is a lot of talk about diabetes – online, in person, with health care professionals, and in the media. How do we move the conversation from the idea of insulin signifying some sort of failure toward the acknowledgement and acceptance that it is the regular progression of a disease?
P.S. I don’t think insulin = failure is an issue just for people with type 2 diabetes. I know I have been in situations where it is so tempting to compare basal rates or total daily doses with other people with type 1 when really our insulin amounts have very little to do with each other.
Just last weekend I spent some time in two different airports, one large and one very small, but ended up with two very similar experiences.
My personal choice is to opt out of the body scanners. I am not going to question anyone else’s decision or security techniques, but with the devices I wear, it is the decision that makes me feel the most confident.
The routine was the same at both airports. I unpack my laptop and put it in a bin. I take off my shoes (and belt) and put them in a separate bin with my baggie of liquids. I make sure my bags and bins are headed into the x-ray machine before I turn to the TSA representative and tell him or her that I am opting out of the body scanner.
On my flight out, at a very busy airport, the official asked me if I had a reason to opt out.
“Yes. I do.”
“Can I ask what it is?”
(You can, but you shouldn’t. It really isn’t any of your business.)
“Yes. I have medical devices that cannot go through the body scanner.”
“The body scanner is safe.”
“Actually it voids the warranties on my devices and I don’t have $8000, so I am going to opt out.”
It turns out that agent was the same one that ultimately did my pat down. I heard another agent mention to her that they were short-staffed that afternoon.
As I was putting my shoes and belt back on, a woman who had been behind me in the security line asked me if I had actually had a reason for opting out. Still excited about my trip and deciding not to be annoyed, I briefly answered her personal question as well.
— Sara (@saraknic) February 28, 2014
On the way to the airport at the end of the weekend, I ended up talking to my friends about accommodations at public places and not being too embarrassed/ashamed/shy to ask for the services we deserve. As a
somewhat stubborn adult, it is pretty easy for me to stand up for myself but I wonder how hard it is for children and young adults with diabetes. It’s also just frustrating to me that I have to over and over again.
At the airport, I found myself in almost the exact same conversation as I had just a few days before. I asserted my rights again. I defended my position again. I got a pat down instead of the body scanner again.
It was probably no more than a 10 minute inconvenience each time. But it’s not really about the amount of time it takes.
I’m not saying they’re wrong. There are a lot of unknowns in the security technology. There are a lot of unknowns in diabetes device technology. That’s why I prefer to play it safe.
I just wish I wasn’t forced to disclose my medical condition in a crowded security line in front of a bunch of strangers to effectively assert my rights.
Sometimes life brings unexpected surprises (hello, diabetes!) but with it comes the laughter, joy, encouragement, fun, support, hope, and strength of unexpected friendships.
(please excuse my drowned rat look, sometimes it DOES actually rain in the desert)
On Saturday, I was up before the sun to volunteer at a local diabetes event. I spent most of the day running around the conference center and up and down the stairs. The extra bit of exercise did amazing things for my blood sugar and CGM graph. I continued to see the results the rest of the weekend – it just started to pick back up around dinner last night (Saturday night/Sunday morning on the left, Sunday night/Monday on the right).
It’s extra appropriate then, that I found a bracelet I bought a few years ago and have started wearing it again.
Last week the diabetes online community helped raise over $26,000 for people who are dying without access to insulin and education. This week, the diabetes online community told a 75 year old woman to “eat” things and “suck” things that I would not repeat in polite company or impolite company.
I am not saying that just because someone in another country is struggling to find insulin does not mean that I cannot fight discrimination in my country (obviously). Comparing battles is a fight that no one wins.
What I am suggesting is that a little patience and kindness be delivered with the education (please read this excellent post by Kari). Just a few days ago, someone who I have been working with every day since October asked me what an insulin pump does. I am the first person with type 1 diabetes that my coworker knows (or at least feels comfortable asking questions to). If I respond with anger and name-calling (or even my oft used sarcasm) to his questions or ignorant statements, what will the reaction be when I ask the same person to spare a rose or donate to a walk?
Before diabetes entered my knowledge after my grandmother’s diagnosis, I really had no idea what checking a blood sugar using a blood glucose meter actually involved. There were no meter commercials back in those days. And then, it was not until my diagnosis that I had ANY idea of syringes, insulin pens, or insulin pumps. Until I was brought my first syringe in the hospital, I had no idea that insulin just had to be injected under the skin into fat and could be done quite discretely.
Yes, Miss Manners’ advice was misguided. Perhaps she has not seen a modern blood glucose meter. She may not know that meters today require a sample as small as 0.3 µL (that’s tiny!). As one of her readers humorously suggested in the comments of the Washington Post column, perhaps Miss Manners has not seen a coach bathroom in decades. She may not know that it is barely a safe place to actually use the restroom, much less take care of quick diabetes management needs. On the same note of the column’s comments, I was actually encouraged by the number of people who replied that they were not that familiar with diabetes yet also realized that the airplane restroom would be the best place to take care of diabetes management.
I am confident I have checked my blood sugar on almost every flight I have taken for the past 11 years. I am even more confident that not a single one of these checks took place in the airplane bathroom. When I needed to change my pump infusion set and reservoir during a layover due to a persistent high, I prepped everything right in the terminal. I did step into the bathroom (but not into a stall) to do the actual insertion only because it was located under my clothes.
Miss Manners was wrong. But the diabetes online community is also wrong to resort to name-calling and vulgarity rather than using it as an opportunity to educate with kindness and understanding. After all, I think even Miss Manners herself would agree that two wrongs don’t make a right.
Weird is the nicest word I could think of for both of the above circumstances!