Winter Regimen

When the air outside is cold and crisp and dry, so you put on extra moisturizer and chapstick.

When the chill sneaks into your bedroom at night, so you pull out the space heater and the extra blankets.

When you're fighting off a cold and it's also the holiday season and the air is filled with carbs and sugar and everything nice.....

So you start to wonder, maybe I should just be drinking insulin with my breakfast? Brushing my teeth with it? Showering in it?  

Boo ya!!!

So I mentioned I've been experiencing a bit of a fizzle lately. And I also mentioned that I've been doing the work to get back on track...backing off the free-wheeling, high carb lifestyle, reinvigorating my exercise routine. That helped somewhat, and things were a bit less crazy, but when I put my CGM back on after a week or so, I still wasn't completely back on track.

I was trying, but I wasn't seeing the results. Unpredictable, unfair blood sugars, things going bananas even when I haven't even touched anything as remotely high-carb as a banana. Nighttime highs, late afternoon highs, all the time highs.

Until....it occurred to me....that maybe my basal rates needed a bit of adjusting? I did a small increase, and...all of a sudden....boo ya!

Things are going my way again :)

How does this translate into real-life, non-diabetic life? Well, I think the moral of the story is something like: when things are going haywire, go back to the basics and see what you can do from there. 

The Last Thing

The last thing I ever ate unhesitatingly and wholeheartedly, was some watermelon chunks. I sucked on them as we drove to the hospital, at 6 am the day after the 4th of July. 

We had made the plan the night before, when the wheezing wouldn't stop, the stomach pains were overwhelming, and we spent a lackluster holiday together in a crappy motel room, watching sitcom reruns and the Food Network (I think) as I drifted in and out of sleep. The plan was this: in the morning, we would get up at 7 and drive to the local medical center (helpfully marked with a blue H on our free visitor's guide to Flagstaff). He would drop me off, and while I spent the morning getting some medicine, he would go on a hike nearby and come pick me up afterwards. 

But that night, we both slept fitfully, both of us waking each time I turned over, just to make sure I was still alive. As the sun rose, I sat up and told him it was time, I couldn't wait anymore. He agreed readily, and so we grabbed our things (I think? I barely remember honestly). I ate a few chunks of watermelon, not wanting to go in on an empty stomach. (An empty pancreas, sure. But not an empty stomach.)

We drove over, parked, and headed in. The first sign that things were a little far gone was when, shivering and struggling to fill out the intake forms, I was ushered into a small room for a consultation...ahead of everyone else sitting in the ER. The second sign came when, as I answered the nurse's questions, and she told me that I weighed roughly 30 pounds below my normal weight. The third sign was when I was ushered immediately into an exam room and my then-boyfriend followed me in. I looked at him strangely, wasn't the plan for him to go on a hike while I dealt with this? He looked at me like I was nuts and soothingly reassured me that he would go "later." 

The nail in the pancreatic coffin came a few minutes later when another nurse bustled into the exam room. She stepped inside, sniffed the air, and asked the question I haven't been able to shake since: "Do you have diabetes?"

I said something roughly along the lines of, "you tell me lady, I'm the one that's in the hospital. Do you think if I knew what was wrong with me I'd be here?" but only more polite. I think I actually just said, "I don't know." 

That's when she explained about ketones, and DKA, and got me the insulin and the IVs and drew blood for tests and got me a stretcher and wheeled me down to the ICU, where I spent a fun few days relaxing, recuperating and getting exposed to tuberculosis (story for another time). 

You know what's funny though? I don't even like watermelon. It was just part of that time, when I was ruled by my thirst and craving for sweet. So I didn't even get my last meal right. It's not like I got to guilt-free enjoy some waffles or ice cream cake or things that make me tighten my seatbelt for the blood sugar roller coaster these days. 

This is Important

I owe the Affordable Care Act so much $32,000.  When I went into the hospital in DKA, I was 24 years old, unmarried, and working full time at a job with no benefits. So a four-day stay in the ICU was really not in my budget. But thanks to the raising of the age limit from 23 to 26, I was still on my family's insurance. Thanks to the ACA, that stay was in Aetna's budget, not mine. Now that I have a "pre-existing condition," I owe the ACA even more thanks that I won't be discriminated against. I owe it thanks for feeling like I can be a substitute teacher if I want to next year, even though there are no benefits, because I can purchase my own insurance on the exchange. 

Speaking of the exchange...on the off chance that there is someone on here, looking for help, trying to understand health care with diabetes, Diatribe (an excellent resource in general) published a great guide here that I'm half posting for a fake audience and half posting for myself as a resource in the future: Diatribe's guide to buying health insurance

Fizzle

I've read plenty about diabetes burnout. Blogs, books, doctor's pamphlets. It's understandable. Diabetes is there, every minute of every day. And it can often feel like it's between you and your life, every minute of every day. And when I thought about burnout and exhaustion, I pictured something big and well, something deserved. A breakdown after 5 years. A flameout when I am diagnosed with my first health complication.

Instead I got this--a slow but steady fizzle for the past 3-4 months. A "bare minimum" mentality after barely even a year of taking care of things. I went a little easy on things during summer break, and I kind of never got back into the routine of tightening things up. Of course I've still been taking insulin, and dosing, and checking my CGM. But my care has been reactionary--I frankly haven't wanted to do the "hard" part of predicting, and calculating, and adjusting, and well, sacrificing. I've been eating whatever I want, as much as I want, and having a "bolus and watch the CGM and take care of things depending on what happens there" mentality. My exercise schedule has been erratic, as well as my schedule in general. I've been letting myself go to bed high in order to avoid having to wake up during the night to treat a low. I haven't uploaded my data in months, let alone adjusted my basal insulin. Part of this has been because of life changes I've been going through, and the struggle of setting up a new routine. Part of this is because of me, and being tired and defiant and a little bit annoyed with diabetes constraints on my life. Part of this is me, feeling like a cowboy who's got this, thank you very much. All of it is a struggle, and embarrassing to admit. I don't feel wise right now, or calm, or collected, or proud. I have been feeling a little lost. I think this is also why I had trouble explaining my diabetes, as I recounted in the last post. I haven't been thinking, or talking much about it lately at all.

But then earlier this week I got a little gift. My CGM sensor (which had been hanging on for 4+ weeks....long enough that I was considering giving him a name) finally gave up the ghost. Right at bedtime. So I decided to wait to put in another sensor so I didn't have to wake up in 2 hours and calibrate. Then the next morning, I was in a rush so I decided to just put one in after work. I knew that day I would have to be extra careful with what I ate, so I was. I put more thought into my doses and timing. I drank more water and ate less snacks. And lo and behold, when I did prick and check, my numbers were just fine. They weren't great (think between 70-170) but they were good. They were relatively consistent. I felt fine. So I didn't put a sensor in when I got home. The next day, I went on a hike without a sensor for the first time in forever. And you know what? I did go low twice but I felt it coming, felt the face numbing and the anxiety, and I took care of it, but not too much care of it, and I honestly felt just fine. And when I checked my numbers they were okay.

So now it's day 5 without my sensor, and I've eaten the same breakfast every day and I feel fine. I've gotten back in the habit of checking first thing in the morning and two hours before bed and right before bed. I feel fine. I feel safe. I feel like I'm maybe back in the driver's seat somewhat, after careening along in the passenger's seat for a while.

It's not all the way. I still saw a BG of 300 last night after an over-treated low. But I took some insulin and when I woke up in the night to check I was 170 which is okay. I woke up this morning at 77 but I ate my breakfast and it's still okay. I still haven't uploaded my data and I'm sure that my next A1C will be higher than I'd prefer. But I have a doctor's appointment on the books at least, so that's good and that's okay.

That's as good as it gets right now, I think, and that's okay. 

"The Talk"

Or, how to introduce people to your diabetes. Specifically, people you are dating.

I recently had to give "the talk" to someone, and I was embarrassed at how embarrassed I sounded. For all my reasonable discussion with my students and contemplation on this here blog, I blushed and stuttered and made light of everything.

I skimmed details, I made everything sound like "no big deal." Because it's not. But also, it totally is. And it doesn't get in my way and yet it does all the time. More like, it gets in my way but it certainly doesn't stop me from going forward. And I want the person I'm spending time with to understand that a sticky high blood sugar doesn't feel good and it might make me cranky, and tired, and yet it's also not life threatening. I'm embarrassed and unhappy about it, but there's no need to worry, unless there's a lot of them happening and maybe I'm not taking care of myself the way I should and maybe then they do worry. I want them to understand that a low blood sugar is something I can generally handle on my own, but sometimes I need a break afterwards. And they might have to push me into that. That three short buzzes means, lower than I'd like but I'm fine, and 4 buzzes means, check in with me, and that two buzzes means, I don't even want to stop and talk about it.

I'd like them to know that I was sick, really sick, and sad, really sad, before I was diagnosed. That it was scary, and it's changed me, and I no longer feel optimistic and trusting and confident in quite the same way. But I am still all those things, in varying degrees, most of the time.

But to express these things is to be vulnerable. It's taking away the jokes, the fun, it makes you more of a real person. It's explaining that you're going to need to lean on the other person. It's giving them a glimpse into the future, when there will be times you won't be able to keep up. It's asking this person to take care of you, or at least prepare themselves to take care of you. And maybe some of these things are the things that I am the worst in the world at asking for. (Just maybe. Okay yes I am.)

That didn't feel great

Generally my convos with my students are pretty awesome, at least the diabetes- related ones. They are so loving, accepting, and genuinely curious that good things usually happen. But when you factor in families, misinformation, and other stuff floating around, sometimes things can be a bit....stickier.

Like last week, when one of my students came in and told me that her sister ate a doughnut for breakfast. And her dad told her, "Maybe you need to go talk to Ms. Gerber about diabetes." And of course it was a joke, and my student was telling me in a lighthearted way. It felt bad to rain on her parade and tell her that her dad had made a mistake. A mistake because nobody's diabetes is a joke, regardless of whether it's autoimmune or not. She was confused, and I'm not sure how much she really absorbed. It was awkward. It didn't feel great.

Or once when I needed to calibrate my CGM in the middle of a reading group, and another student said "Ooooh I hope you don't prick your finger here. I really don't like that." My stern response that I don't really like it either surprised her. That didn't feel great.

I can be harsh on my students, and assertive when it comes to my feelings about diabetes and how their comments and behavior affect me. It's not how I actually am when dealing with other adults, but I think it's important for their future interactions out in the world, whether it's with a PWD or a PW_____ disease, for them to remember that it's a sensitive subject. That people have feelings about their diseases, and that you can't be cavalier. I have a thicker skin than most (working with kids you have to...they will definitely let you know when you've been wearing the same outfit too much or your hair is looking unusually greasy) but I don't want to send the message that people with diabetes have to have thick skin. That just because their pancreas is on the outside, you have a right to comment on it however you want. I want to send the message that curiosity and respect are welcome, but feelings and boundaries must be respected. And sometimes that means shutting students down. And well....that doesn't feel great.