Silent But Deadly

I generally choose to coexist peacefully with my diabetes. There are many reasons for this, including counting my blessings that this is the worst I'm hit with. Including lack of other options--to rage against diabetes would be pointless and even more exhausting. Including even gratitude, for its grounding presence and the healthy habits it encourages in me.

But lately, rage has been seeping in. It started a week or so ago, when I was walking to work and reminiscing that I'd actually had a really nice night's sleep. And then, all of a sudden, I remembered that I had been woken up no less than three times the night before. From a buzzing alarm on my OmniPod reminding me to check my BG 2 hours after putting on a new pod (never mind the fact that I wear a CGM and therefore don't need that reminder--I'm unable to turn it off). From a low BG that danced around 85 and sent buzzes off twice on my Dexcom before it finally calmed down. And that was a good night. I suddenly got so angry. Angry that this was acceptable to me, that I didn't even notice or really remember what it feels like to sleep the entire, whole night through. 

Since then, I'll say it. The buzzes have been pissing me off. They ruin my sleep, disturb my yoga classes. The incessant beeping of my Pod every 3 days--I know it's going to expire! I know it did expire! I'll keep it on as long as I please, since I paid so much freaking money for it!! I'm angry. I'm frustrated. I feel like my devices are running the show, and while I don't want to give them up since they allow for such well-calibrated maintenance of my health, they are causing other problems for my health. Mostly my mental health I guess. 

I am angry. I'm angry that other people's pancreases are free, and my insulin costs me 2 pairs of Lululemon leggings every month and a weekend vacation getaway every 3 months for my Pods and sensors. 

I'm angry that there are lumps on me when I wear my clothes and that my students can feel my pump when they hug me and that there are rashes and scars all over my body.

I'm angry that I have to poke holes in myself constantly and that at least one of my devices seems to constantly need something from me. 

I'm angry at the moments that are, if not stolen from me, at least force me to fight for them, through the soup and fog of a high blood sugar or the exhaustion and fuzziness of a low blood sugar. 

I'm angry at having to explain myself, at feeling like people worry about me, at constantly worrying about myself.

I'm angry at how much of my brain power I waste on thinking about food. 

I don't feel like issuing a disclaimer here. I know there are people worse off than me. I know that everyone has their stuff. I know that my life was not perfect, nor even necessarily better, before diabetes. I know that I'm lucky that I even got to experience so much of my life before diabetes. I know all that and I'm still angry. It's not that it feels unfair. It's perfectly fair. It just also sucks. And I'm angry about it. 

I'm hoping that writing will help me relax, because stewing in it hasn't been working so far. It's been eating at me, creeping in whenever I hear a buzz or see a flashing screen or buy more crap to keep myself alive. Maybe saying some of these things out loud will allow me to shake them off and move on. Because while I do see a future for myself with better management, and hopefully less effort, if I'm being honest, I don't see a future without devices. I certainly don't see one without diabetes. 

Surfing the Crimson Wave

Yeah, it's not what you think it is.

But occasionally, very occasionally, I hit what I like to call a "sweet spot" or a "gusher" with my cannula. So when I pull the Pod off my body, aside from the usual sting of the tape ripping off, I also get a stream of blood running down my body, extremely disproportionate in size and velocity to the tiny, tiny hole the cannula created.

(Cannula=small, thin, plastic tube that does the dirty work of piping insulin into me)

It doesn't hurt, but it is a lot of blood, and I have to fumble around to contain it and recently it cost me a PJ shirt. The funny thing is, is that I'm pretty sure this is what people picture when they (I'm sure extremely rarely) imagine what it's like to change an insulin pump. So this is just a PSA, folks. It's not like pulling a tooth. You don't get a sweet view of my inner organs working like that fistulated cow I mentioned a few months ago. It's just a small mark, hardly noticeable, except when it's not. 

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.