2nd Dia-versarry

A few weeks ago, one day before I turned 26, I had my second diaversarry. Two days before that, I had my first A1C check that included only time I had been using an insulin pump.

To check your A1C at my endo, the assistant takes a blood sample, sticks it into the machine in the exam room, then walks out. The machine counts down from 7 minutes. The second I’m alone in there, I become Cookie Monster in the Siri commercial.

This time, my husband couldn’t come to the doctor with me for distraction during this very countdown, so I waited alone and tried to read on my phone for as many seconds at a time as possible before I peeked back at the machine. I’m pretty sure I didn’t breathe the whole 7 minutes.

When the countdown was over, a 6.5 popped up. This is a HUGE milestone for me. I’ve never been below 7.0 and have wavered up to 7.6 in the two years since dx at 14.1.

For months I’ve been texting my friends and family #roadto6.5 whenever I go for a walk or to a Zumba class. I can’t believe I actually hit my goal just two days before I hit the two year mark with diabetes. I honestly believed it would take another 6 months to move the A1C marker down that low (partly because data from my CGM predicted an A1C of 7.0)

So I celebrated the dia-versarry, the A1C, and my birthday with a mid-day cupcake. This is definitely not an end point, but I feel amazing to have come so far and so lucky to have access to a doctor who meets my needs (finally), technology that gives me information and control (finally) and a huge team of supporters (have had since the very second the doctor called me two years ago <3).

Diabetes, I wish we weren’t in a relationship. But we are. I can’t break up with you, so I guess we’ll find a way to make it work over the next 60 years or so. If you can’t be with the healthy body you love, love the imperfect-but-trying-so-hard body you’re with.

On Loving a Body with Chronic Illness

Body positivity is a difficult thing for pretty much everyone I’ve ever met. None of us are perfect, and we’re reminded of that a lot. We try a lot of things to feel positive about our bodies, from pushing them to the limit with exercise to thinking about all the bodies that we say are “worse” than ours.

I know a few people who respect and care for their bodies in a healthy way, but it’s pretty rare. We hide and over-correct and ignore the issue entirely and fake confidence thinking it’ll come eventually. At least those are some of the strategies I’ve tried so far.

And then there’s diabetes. If you find a way to love your body in the circumstances we all face, you’ve done something pretty incredible. But if your body fails you in this huge, permanent, constantly irritating way, it’s so so hard to forgive it.

I feel angry at my body for the weakness of chronic illness a lot. I think it’s especially hard because diabetes has sort of a moral failure stigma attached to it. People believe that if you eat too much cake, you get diabetes. You couldn’t control yourself like the rest of us, so you gave yourself a disease that you probably won’t be able to control either.

Of course, that’s not how it works. People do not eat cake and give themselves ANY type of diabetes. Type 1 doesn’t even have any correlation to lifestyle choices. But I still feel like this disease and the difficulty of its management are seen as character flaws by a lot of people. It’s pretty hurtful to have healthcare providers insist that every problem with management is caused by you when diabetes is so complex and sometimes so random.

And I wouldn’t have to deal with any of this if my body had just kept it together. If my pancreas would do its job, none of this would be my problem. So it’s hard to love a body that has failed in keeping me healthy AND brought the emotional stress that comes with diabetes.

So I tried hating it for a while. I thought it was okay to be mad at a body for failing me in ways that it wasn’t okay to be mad at a healthy body. Maybe that was part of my acceptance process, but you can’t stay there. This body is mine, and I have to make peace with it.

So I did some soul searching, and I think I know how to love my body now. It can’t power itself without my help, which is infuriating. But it’s the only way I get to be with the people I love.

My body keeps me here in a world where I hope I have a lot to do. It lets me cuddle with my husband and hug my friends and see movies and go to beaches and restaurants and malls and art museums. My body, even in its broken state, is what lets me be a part of all the families I’m lucky enough to call mine.

So sometimes when I’m tempted to hate my body, I look at my feet on the floor or hold my husband’s hand and say thanks to it for doing its best. It’s not perfect, but thanks to a lot of hard work from a lot of people, it’s keeping me here.

10 Things I Wish I Knew Before Getting an Insulin Pump

When I was trying to choose whether to switch from shots to a pump, I read a LOT of blogs. I got a ton of great perspectives and information. But I had hard time getting details about the logistics of what it was really like to start pumping. Lots of T1s have been on pumps since they were children so the don’t remember the transition well, or they focus on the changes in BG levels or management decisions. All this is great, but there have still been a lot of surprises these first few months. Here’s what I wish I knew during the decision-making process.

1. My doctor believes me so much more.

I’ve had my fair share of bad endocrinologists, and I’m so lucky to have a good one now. But in my appointments since I got the pump, there’s been a definite change. She comes into the room with a game plan, and I rarely hear things like “are you counting carbs?” Which leads me to number 2…

2. I have much better data (with or without a CGM)

I’m using the Medtronic Minimed 530G with Enlite. Even before I started wearing the sensor, the overlay of my BG checks, insulin doses, and carb/correction inputs into the pump was a complete game changer. The CareLink software has been so much more valuable than I expected. I don’t think I’m disciplined enough to keep these records by hand, and I honestly don’t think my doctor would trust them as much if I was writing them down. With the addition of the sensor data (even though it isn’t exactly 100% accurate), we know so much more than we did when I was taking shots and letting my endo scroll through my meter at every appointment. The data and better doctor relationship have been the real game changers. They let me take advantage of all the features that sold me on a pump/CGM combo, like advanced types of bolusing and varying basal rates throughout the day.

3. The timeline is about 30 days from giving “green light” to wearing the pump.

I had the hardest time finding info about the timeline for getting my first pump, so here’s a quick recap. My endo suggested it at my very first appointment with her. I had to wait for my husband’s job/insurance switch to be complete. I made the call to the doctor to say “go ahead” (she works very closely with some Medtronic reps, so there wasn’t much debate about which pump to get for me), and the process got started. There were a lot of phone calls, but much less insurance arguing than you might expect. Medtronic really handled most of that for me. A few weeks later, my pump came. I scheduled training and started wearing the pump about a month after that initial phone call to the doctor’s office. I went back for training on the CGM about 2 weeks later.

4. Switching to 100% short-acting insulin means a ~25% reduction in overall insulin dosing.

When I read about people taking 2.5 unit meal boluses before I started on the pump, it blew my mind that they could be so small. And I still take much more insulin than most T1s. I’m dealing with some insulin resistance in addition to my insulin dependence, but I’m still down a good bit from my pre-pump days and in better control. On my first day we started by cutting all my doses by 25%, and it was a big surprise to me. I knew there would be adjustments, but this was a standard one I didn’t expect.

5. I don’t love pump pouches.

I wear a lot of dresses, so I expected to use a pouch on my leg pretty frequently for my pump. I’ve found that the one I got is a little uncomfortable, though. If I can’t clip it or put it in my pocket, I tend to just put my pump in my bra. I have to go to the bathroom to bolus, but I got the Minimed Connect, so I can see my CGM data on my phone. This makes putting the pump in hard to reach places much better, since I don’t have to sacrifice access to my CGM readout.

6. No strangers have asked me about it in public, but all my friends thought it had to be surgically implanted.

I expected to get a few questions from people who saw my pump, and I may still. I know I would ask people with pumps questions before I got one, even if I didn’t know them. Of course, I knew exactly what they were and was asking some pretty specific PWD-to-PWD questions. I’m not nervous about this, exactly, but it is different than I thought.

Friends and family are different, though. They all thought pumps involved some sort of surgery/port. I guess that’s logical, but it surprised me that even the healthcare professionals I know didn’t know how sites worked. I also got a few of the “so this does everything for you, right?” questions. I usually try to explain an artificial pancreas system, but their eyes glaze over pretty quickly.

7. A bottle of insulin has 1,000 units in it.

It was surprisingly hard for me to find this out, but I’m a little obsessive about insurance and refills. It just helped me to know exactly what to expect.

8. Boluses can take forever.

I hear this is different with other pumps, but the Minimed takes SO LONG to deliver a big bolus. In the 5 minutes range. I know this is for comfort to avoid the stinging that can come with quick pump boluses, but it takes some getting used to after shots!

9. You can get some weird overlap in the first 24 hours.

I had been splitting my Levemir dose between morning and night when I was taking shots. They told me not to take the morning part of my dose on the day I would switch to the pump, and most of the day was fine. About 9 pm, I had my first ever asymptomatic low. I was 55 on my new meter, so I ate my standard fun sized bag of Skittles, waited 15 minutes, and checked again. Down to 50. Still no symptoms. To be in the 50s is very unusual for me, so I totally freaked out! I ate more Skittles and suspended my pump, and came back up above 100. I thought by that time all of the Levemir would be out of my system, but I guess it just took a really long time for it to absorb.

10. Doorknobs, pants, and couches will rip out your site. Gravity won’t.

Adjusting where you sit, your jeans, or getting your tubing caught on a doorknob will all pull out your site if you aren’t careful. It hurts less than you would think. But dropping your pump so that it’s hanging by your site won’t rip it out, which is great for those times it falls out of your pocket!

Edit: Sometimes gravity will rip it out. Like maybe 1 in 20 times you drop it at most. Usually only if your site isn’t so good anyway.