Saturday, September 26, 2015

Just Say Yes....

Last week I climbed a mountain. It took 12 hours up and down, and it was exhausting. I finished sunburned, feverish, jelly-legged, muscles depleted, CGM graph frenetic and as peaked as the mountain we just climbed.

But I made it. I hauled myself up slippery rock steps and down precipitous cables and my body, my muscles, heck even my pancreas made it possible. Remembering my body a year and a half ago, I can't be anything but thankful for it's capabilities. Thinking about all the work I put into my health, it was exhilarating to think, This is what it's all for. 

Yes, of course I manage my health so that I can live a long and healthy happy life with all my limbs intact. Of course I manage my health so that my day-to-day quality of life isn't sticky with high blood sugars. But I more-than-manage my health, I keep myself healthy because this is the kind of stuff I want to do. I want to look out over valleys and scramble down rocks and dip my feet in rivers. Or not, if I change my mind. But the freedom to choose and change my mind and explore and experience? That's what I work for. 

Saturday, September 19, 2015

Death by Stubbornness

Every two years, I get CPR certified as part of my job requirements. And so every two years, I watch the lame safety video on offer about all the various diseases/conditions/ailments/disasters that might befall people on my watch and which I, as a First Responder, now have a duty to, well, respond to.

There's anaphylactic shocks and EPI Pens, choking, asthma, and of course, good old T1D and hypoglycemia. While I hated the feeling of watching a safety video about myself, I did think it was interesting the part of hypoglycemia they chose to highlight---the attachment to tasks and resistance to eating/addressing the problem. The actor is trying to finish some paperwork, and getting increasingly frustrated and unable to complete the task. Yet when his concerned friend suggests that he check his blood glucose and eat a snack, he repeatedly refuses and remains focused on the task at hand.

I think, to a non-T1D person, this might be hard to understand. You have a "condition." You're obviously not well. Your body is *literally* sending you signals that you are dying right now. Because you are. Your brain, picky eater that it is, is starved for glucose and will shortly no longer be functioning as you'd like it to. Your systems will shut down, one by one, and in a way, it will seem as though you have died of stubbornness.

I know that there is some counterintuitive neurological explanation for all of this. Your body is being flooded with                       and yada yada yada. But I also think that this symptom taps into an essential weakness in a T1D person's personality. And that is, simply, to not have to deal with diabetes. To not have it. To climb a flight of stairs and eat the dinner they want to prepare, rather than hastily devour a granola bar on the front landing while the neighbor's kids watch. To have a conversation with the person addressing them, rather than mumbling "mhmm, uh-huh" distractedly while chugging a juice.

And so, while you're at your weakest, you have to be strong with yourself. You have to admit, I'm sick. I need a break. I need to be awkward, be uncomfortable, expose a part of myself that I'd rather not. I have to reprioritize, reorganize, and rethink. Most importantly, I need to eat something and think about all the rest of this later.

When I find myself in this place, just trying to make it through X before I deal with my blood sugar, I try to rein it in with a firm reminder to myself. This will be easier when it's over. And it's usually true. 

Saturday, September 12, 2015

One vs. Two

I just want to clarify here that I am not an endocrinologist (surprise!). I don't even know close to everything about Type 1 diabetes (although I'm attempting to learn all that I can), and I certainly don't know close to very much at all about Type 2 diabetes (although I am also attempting to learn about it too). But people ask me about it, all the time, of course. And so I research, and I read, and I try to answer their questions honestly and fully and point them towards resources (Wikipedia, mainly...) that can help them learn more. So I just felt like I wanted to point something out here. Mainly when people talk to me about my diabetes, I receive a lot of sympathy and compassion. But unfortunately, it can often come with a downside, which is people's attitudes about Type 2 diabetes and what that means. 

I just want to go on record here and say that, diabetes sucks. All kinds suck. And to be honest, in my opinion, it's more of a "spectrum" disease, what with LADA, insulin-dependent Type 2 diabetes and all that whatnot. 

I can't imagine what it would be like to be going through diabetes, all the stress, and the math, and the changes and the responsibilities, and to have on top of that the stigma of most people walking around thinking you did this to yourself. Or even worse, the twin thought attached to that, you deserve this.

Here are some (endocrinologist-approved) facts that I know about diabetes. Guess what? Type 1 is not genetic. That would be Type 2. Yeah....some people are just genetically predisposed to be unlucky in their dealings with carbohydrates. 

Here's another fact. You never "undiabetes." No diabetes is curable. It's true that during diabetes onset, you can stave off the full effects with diet and exercise control. But once you have diabetes, you have it. Type 1, Type 2, Type 1,000,000,000 (that's pronounced "Type tres commas"). 

I'll tell you two stories that I've been told in my life. Here's one: My great-grandpa used to eat whatever he wanted all the time. Every night of his life, he would come downstairs before bed and eat a giant slice of pie and drink a big glass of milk. He was skinny as a beanpole and healthy as a horse. Here's another story, of which I've been told several variations by many people about many people: My cousin has Type 2 diabetes. He eats whatever he wants all the time and just takes the pills but doesn't do anything else besides that. He once went out to dinner with my mom's family and ordered macaroni and cheese and dessert!! Did I mention he has Type 2 diabetes?

I don't know what it's like to have Type 2 diabetes. I can't speak for them. But I can speak to the experience of watching people's face change as I....reassure....them?? (not sure on word choice there but it kind of feels appropriate) that I have "the other kind" of diabetes. The kind that everyone can feel comfortable talking about. The kind that doesn't make people think uncomfortable thoughts about people's access to healthy food and food education. Or who's serving food in our public schools. Or entire mass marketing campaigns and food industries that are built around tricking our brains and getting us addicted to their products, pancreases be damned. Or just the crappy, crappy luck of having a body that doesn't 100% function perfectly. 

So this has been a bit of a scattered rant. But I just wanted to lay things out here, because guess what? No one deserves diabetes. And if you think that people do, then maybe you're the rare exception that actually DOES deserve diabetes, just so you can gain some freaking empathy. That felt mean. But, you know, I don't want to deny the fact that I do have Type 1 diabetes and that's an autoimmune disease, which is distinct. But I also don't want to deny the experience of anyone with diabetes. I am not sure how this belief plays into my future with this disease. But I want the people I care about (aka you, my limited audience) to make sure to check your attitudes, too, even when you mean well and are trying to express how much you care about me. 

Saturday, September 5, 2015


Earlier this summer, I was looking for some new real estate opportunities. What this means in teacher-salary-speak is, I was looking to move from a shared apartment to another shared apartment in a slightly more central part of town. But still a shared apartment. That I rent. That being said, finding any kind of living situation here in San Francisco is a pretty great opportunity...

On the course of my journey, I went to several open houses. These were, without exception, extremely awkward and cringe-inducingly uncomfortable. How exactly are you supposed to behave when you show up to a situation where you need a living situation, and so does literally everyone else who is there at the exact same time as you? And it is very very clear that only one of you will be chosen? Do you try to make yourself memorable? Do you try to force a "connection" with one of the current occupants? Do you accidentally walk into a closet while trying to let yourself out of the apartment? I tried all three of these strategies, and let me tell you, none of them worked for me.

At one of these open houses, though, as I was signing the guest book (?!?!?!?!!?), one of the other desperate searchers came up to me and asked, "I don't mean to be rude, but is that a continuous glucose monitor on your arm?"

Stop. Drop. And roll? What a magical question! I dream of these sorts of connections. So we chatted for a few minutes about how it was actually my insulin pump, and the glories of tubeless pumping. Then I asked her for the source of her expertise--was she or someone she knew T1D?

"No," she said. "I used to have Type 1 but I don't anymore."

Crap. I thought. My connection person is actually a weirdo! I braced myself for some herbal supplement advertising (*cough* Halle Berry *cough*) and prepared to extricate myself.

"Yeah, it was really hard to control for me, so I had to have a transplant. But now I've been cured for about 5 years."

Somehow, in all the talk of artificial pancreases, closed-loop systems, and stem-cell research, I missed the memo that there is already a cure for Type 1 diabetes???? I did some more research, and it turns out that it's extremely dangerous and really only for use in extreme cases. But still. How did I miss that?!? Still learning every day, you know?

Just in case you're really tormented by the cliff hanger of this post, I did in fact find a place to live. In a great apartment. With a lovely roommate that I met with one-on-one and we clicked right away. So there!