Saturday, December 26, 2015

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?  

Saturday, December 19, 2015

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. 

Saturday, December 12, 2015

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. 

Saturday, December 5, 2015

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

Saturday, November 28, 2015

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. 

Saturday, November 21, 2015

"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.)

Saturday, November 7, 2015

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. 

Friday, October 30, 2015

The Big Reveal

T1D life: when in addition to making sure your legs are shaved for an outing, you also have to check and make sure--is my CGM bandage too ratty? How long has that moldering Band-Aid/Flexi-tape/Tegaderm combo been hanging on there anyway? And was it that greyish color when it started?? I mean, it's already a bit unusual looking anyway, so maybe it doesn't matter if it looks like swamp slime around the edges....hopefully....right??

It's an "invisible disease," sure...but only to a certain point. 

Saturday, October 24, 2015

I'm Afraid of...

Dying at night.

It feels crazy to write that, because it's not every night and it's not all the time, but it is something that I think about probably more than the average person. I think I use this blog often to vent my frustrations. Or clear my head. Or share funny stories. It's not often that I like to be truly vulnerable on here, in real time. Usually I write about things a few days or weeks later, with a different lens, a calmer, more rational lens.

But last night I had one of those nights. You know that feeling that you get, where right when you're falling asleep, you feel like you step off a curb or miss a stair step or something and you jerk awake? Well I sometimes get those, except it's the middle of the night, and I feel jerked awake by a sudden fear that my blood sugar is low...like really low. I jolt awake, certain that I'm disoriented, confused, and near seizures. Only to check the CGM or prick my finger and see that I was cruising at 124 and steady. And there are some nights like these, where the fear doesn't subside for the rest of the night.

Or sometimes the fear sneaks in other ways. Like when I groggily hear the CGM go off, warning me that I've dropped below 85, and I just decide to ignore it and hope I'll stay in the 80s. And then it goes off several more times, and by the time I finally pay attention, I'm LOW below 55 and I've wasted 45 minutes pretending it wasn't going to happen and now I'll waste another hour tending to it.

Or when I am camping, and I have to be separated from my food. All food, even my sugar tabs. And I set my low alert to 90 just to be extra safe and I send myself to bed with a BG of 290 because I'm terrified of having to wake up and run to the bear canister. I sleep with my CGM tucked into my beanie, to be extra sure of hearing the vibrations. I wake every hour and a half, to be sure that I'm not accidentally sleeping on the side of my body where my sensor clings to my leg, thus cutting off signal and potentially not alerting me to my brain's starvation.

I think part of it has to do with the fact that I'm sleeping alone now for the first time in my diabetes career. But part of it has always been there, because to be honest, I have no idea what it looks like to have a severe hypoglycemic attack and it's very possible that I could die quietly in the night even with someone sleeping right next to me.

So, yeah. Having diabetes, it is what it is. Anyone could die in the night, at any time and I get that. To borrow a phrase from Bob's Burgers, I'm no hero. I still put my bra on one boob at a time, like anybody else. But maybe I know a little something about fear that I didn't before. 

Saturday, October 17, 2015

Do you or a loved one suffer from diabeetus?

"Ms. Gerber! Ms. Gerber! Hiiiiiii! We miss you so much!!"

It's lovely to be at the beginning of the year, when my class from last year still feels so attached. They're not completely immersed in second grade yet, and are always looking for a hug when I walk by them. They'll move on, but for now it's nice to have the rockstar moments when they all go nuts when they see me.

Especially when they come out with gems like these:

"Ms. Gerber, how is your dia-bee-bu-diba-doot...you know, your, your, dibabeebles?"

So many fun ways to pronounce this condition!

Saturday, October 10, 2015

It's kind of blissful when...

Your pump is on your arm and you're taking a CGM break and you realize that you don't have to do any kind of shimmy or dance to put on your pants.

That's all in terms of words of wisdom this week folks! Just the little things you know 😉

Saturday, October 3, 2015

It's Weird and It's Wonderful

The nurse in the hospital told me that diabetes is like a part time job that you never get a day off from and never get paid for. She was right, and she forgot to mention that it forces you to become a workaholic, too. But while I am working hard, I also have a great appreciation for the work that I'm NOT doing.

Becoming aware and responsible for my body's processing of carbohydrates has made me in awe of everything else my body has been quietly, effortlessly chugging away at. Managing my blood sugar is exhausting and overwhelming and somehow my body is keeping me breathing?! It's translating my every intention into motion, every beam of light I encounter into visual information? Just spend some time thinking about it. It's a fun meditation in yoga class, to picture your muscles flexing and tightening and releasing, right underneath the skin. Imagine your lungs inflating. Try to break down the process next time you lift your leg to take a step.

When I was sick, unable to process carbohydrates on my own and unintentionally depriving it of insulin and access to proper energy, my body began breaking down its fat and muscle as energy sources. I lost 30 pounds. I shrank to a size 2, size 0, I shrank to my "Hollywood" weight, and I got compliments. I was scared but I was also happy. Because what woman doesn't want to be skinny?

But when you lose your fat, you lose your curves. You lose the part of you that looks like an actual adult woman. You can't sit down without feeling your bones hitting the chair. Your face sharpens and your features look too large. When you lose your muscle, you lose your abilities--to hike, to walk, to wander. When everything is effortful, you lose your enjoyment. Your body is "what you've always wanted" but there's nothing fun about it.

So imagine my joy when I actually got my body back. I got a second chance. I still have my struggles with my appearance, of course. But whenever I'm disappointed in the way clothes look, or feeling dismay over my bulky arms (everyone's got that one thing, right??), at least things are working. At least I'm alert enough to dismay. At least my body is functioning so well that I basically (well, with a lot of help from the media's messages to women) have to invent problems with myself.

The body-positive message is always, forget the outside, focus what's on the inside, right? Well of course personality is important. But don't forget about what's actually on your insides--muscle, and bones, and blood, and electrical impulses and whatnot. There's a lot going underneath your skin before you get down deep into your personality. There's a lot to appreciate in virtually every layer of you. 

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

Cured

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!

Saturday, August 29, 2015

Insanity

I once read this quote by Albert Einstein, which (heavily paraphrased here) said that "Insanity is doing the same thing over and over and expecting different results."*

The other day, as I was meditating during my yoga practice, this quote popped into my mind and I let it guide my practice. Suddenly, right in the middle of a downward dog I began to laugh. Very slightly, of course, but really I couldn't help but let out a big chuckle. Because isn't this exactly what everyone warns you about with diabetes? That even though you might do exactly the same thing two days in a row, eating, exercising, bolus, basal, everything, you can still get different results? That what works Monday is not guaranteed to hold up on Tuesday, or even any other day of the week?

So apparently the lesson here is that living with diabetes=living with insanity. Accepting that the rules of the universe no longer apply to the chaos inside your body. So, laugh away, people, laugh away. Because I (and my pancreas) have disproved Albert Einstein. Watch out Galileo! I'm comin' for ya....


*I did not bother to verify this quote because I already had this whole post worked out in my head. 

Wednesday, August 26, 2015

Give Yourself Permission

I read a great article today about wellness, and attitudes towards wellness. There was a section in there that really resonated with me, with quotes from Dr. Michelle Segar, who writes about the science of motivation and exercise. 

Here is the passage:


'Also important is giving oneself permission to make self-care through physical activity a priority. Dr. Segar wrote: “When we do not prioritize our own self-care because we are busy serving others, our energy is not replenished. Instead, we are exhausted, and our ability to be there for anyone or anything else is compromised.”'


I mean, how true is this?! In some bizarre, psycho twist of today's society, we do not give ourselves permission to prioritize our own self-care. It feels very true. We all know that exercise, that movement is important. It's essential. We know that it's good for our hearts, our brains, our circulation, our diabetes, whatever. Yet we still view it as essentially selfish, isolated, independent. It's rarely something we share with others, and it's not okay to prioritize it over many things. The idea of taking care of yourself so you can take care of others? Virtually nonexistent, and unfortunately this is especially true in the teaching world (and in others' view of the teaching world...).


Nowadays, people are very respectful of my needs to eat healthily and prioritize exercise, which is one of those weird "silver linings" of diabetes that I keep running into. While I really appreciate this, I also want to stress the importance of exercise so that you don't wind up with a chronic disease. There is so much wrong with policy and attitudes towards health in the U.S. today, and I really think this is a big one. Why why why do we only value our health once it's already endangered?! Why is preventative care selfish, when treatment here is bankruptingly expensive? Now, I'm not saying that every disease can be prevented, because obviously I have one that can't. But there are side effects that I can prevent. And there are millions of people with side effects of unhealthy living that could be prevented too. There's much more I can (and probably will) say on this topic, in terms of food deserts, institutional foods, and lack of access to resources (including safe outdoors space). 

But right now, I just want to ask you to give yourself permission to take care of yourself. Take care of those around you. Quit guilting yourself about your yoga habit and start appreciating the fact that you're spending money on something that really matters.  Don't think about the fact that your jog takes you away from the people you love and think about how much more time it actually gives you with them in the long run (the long run....see what I did there?). Get out of this mindset that you're only worth worrying about if you're already broken. 

Saturday, August 22, 2015

Afrezza Update

So, in a previous post, I mentioned that I would be giving a bit of an Afrezza update based on how it fits into my "Carb Counting Lite" diet, per se. I figured now would be a good time to give an update, too since I've been using it for about 4 months and a lot of the internet chatter seems to have died down about it.

So we'll start with addressing the pros & cons from my old post to see if/how those have changed. Follow along with the grey text, to see my older comments, and the bolded font to see my new opinions.

CONS:

  • Suuuuuper awkward in public. I've gotten used to quietly beep beep booping away in the corner with everyone else oblivious to what's happening. Of course I'm pretty nonchalant about doing finger sticks, but people are generally cool with that because it's familiar. We've all seen the obesity documentaries. We know what diabetes is. But shoving powders into a plastic whistle and doing your best Snoop Dogg impression? Attention grabbing, to say the least. This one is still very true. It's also happened multiple times that people just start asking me a bunch of questions and I just have to kind of nod along and gesture while inhaling deeply with the whistle hanging out of my mouth. Actually though, one time someone just thought I had asthma so that was kind of a relief. 
  • Dosing is confusing, to say the least. It's just in and out so fast...it's hard to know how much is actually going "in." And it doesn't seem to hang around very long, so it can lead to some roller-coastering around mealtime. Some people have recommended doing a pump bolus and an Afrezza bolus...I'm still investigating. Pump/Afrezza combo is definitely the way to go. I will sometimes use Afrezza instead of a pre-bolus if I don't feel comfortable dosing an hour before a meal, or if I simply don't have the heads up on eating. I use it to stave off an initial post-prandial spike, but I always (okay mostly) make sure to do an adjusted pump bolus at the same time so that it will hit essentially right as the Afrezza is finishing up.
  • Still have to wear a pump--for basals, for food bolusing (because I'm still figuring out the dosing, I mainly use the Afrezz' for corrections). So that means I'm a whistle-blowing, ever-beeping cyborg now. Still wear my pump. 
  • It doesn't keep for very long (although I haven't tested this) but once you open a foil pouch (which contains roughly 10 blister packs of 3 cartridges each), it's only good for 10 days. And it takes up more space in your refrigerator, too. This is not an issue...I definitely take more than 10 days to use a pack and I haven't noticed significant problems. 
  • It's hard to keep track of--I rely on Diasend to help me manage things, but since I'm taking less pump boluses and there's no way to automatically upload my Afrezza use (and no app that lets me upload all my data plus add in manual timestamped notes in once place), it's messing with my organization. And since I'm also Type A, in addition to Type 1, I don't love that. Ugh still annoyed by this. The right diabetes app is harder to find than good real estate!!
PROS:
  • It works. It works. It works, it works, it works. I CANNOT say that one enough. It just does. Wicked post-prandial spikes after breakfast? Accidental snacking binge at the staff meeting? random CGM delay that shows you at 113 --> one minute and 181 double arrows up 5 minutes later? SHAWTY DON'T PLAY. One 4U puff and things are smoothing out. No rage-bolusing. No vigorous, frustrated walks or bike rides that BF is forced to endure. No 5 hour snooze alarm on my Dexcom going off to remind me that I've been out of range for way too long. We're talking results within the half hour. STILL VERY TRUE!!!! Nothing works faster, even on high fat/high carb meals. 
  • It works, just the right amount. As in, this weird flattening out effect where I never seem to drop below 65 with it, as long as there's little to no other insulin in my system. And then I usually drift gently back up into the 80s or 90s. It's confusing, sure, and I sometimes treat for hypos that never happen...but still...Soooooo, this is less true now. I am generally pretty insulin-sensitive, and I think 4U is really just too much for me. If I haven't eaten in the past 2-3 hours, and/or I don't have plans to eat immediately, it's a little too strong for me to take unless I'm above 250 and still rising. 
BOTTOM LINE: Afrezza is great at what it does, but it's no substitute for subcutaneous. It's perfect for those formerly really frustrating situations, like a blood sugar of 200 when you're about to go out to dinner with friends, or an unexpected meal opportunity, or wanting to eat right after exercise/waking up and not being able to pre-bolus. It can help if you accidentally eat the fridge AND the kitchen sink after a low blood sugar, too. It's also really helpful with foods that are guaranteed to give you a spike, like fruit or non-chocolate candy. I also like to take it if I know I'm going to be hiking soon--I'll eat breakfast, cover it with Afrezza only, then leave on the hike about an hour later, as it's wearing off. Since it clears out so quickly, I don't have to worry about IOB while hiking. 

However, it's still a little too tricky and unpredictable to really be a basis for good control, in my opinion. It is definitely a tool to get there, but it is so strong (at least initially) that if you have any other IOB, or exercise going on, the risk of going low is too high in my opinion. It's also not enough to cover a full meal on its own--even with two doses spaced apart, I usually end up yo-yo-ing a lot, and have to spend a lot of time glued to the old Dexcom. 

I still highly recommend Afrezza, however. While it's true that a low-carb diet and rigorous bolus-ing with a pump and super-accurate basals and a consistent schedule can control your blood sugar better, that's just not a 100% reality of life. Afrezza allows you to have a bit more freedom and breathing room (HA.HA. See what I did there? Because it's inhalable?) while still living your actual life. I recently went on a 2 1/2 week road trip and it was invaluable to keeping things relatively under control. Of course I still ran higher than I preferred, but have you ever tried asking for a carb count on a meal in rural Wyoming? Or a salad? 

BOTTOM BOTTOM LINE: Guess what, big surprise, Afrezza is still not your pancreas. But it can help you feel a lot less of the stress and guilt of being pancreas-challenged. 

Wednesday, August 19, 2015

Uhhhhh Doyyyyyyyy (Plus some recommended reading material)

(Author's note: I'm not really sure on the correct spelling of dooooyyyyy. But imagine it said to you in the most annoying, 13-year-old "cool kid" voice)

So, it's always thrilling when people tell me they read my blog and enjoy it. It is definitely flattering, a little dose of celebrity. I always feel just a teeennny tiiiinnnny bit famous. Even though it is always someone that I already knew in real life, who would probably listen to these things if I said them to them out loud.

But then one of my friends said something about how when she reads this blog, she sometimes feels dumb because she doesn't know things like what a bolus is. And I'm like, uhhhhh doyyyyyyy (to myself, of course). To me, this blog has no real, definite audience. Or manifesto. But I do view it as sort of a "letters to my past self" type thing, or really more like a "diabetes for dummies." (Side note: this is not really a good place to get your basic diabetes info if you actually have diabetes. You should read Gary Scheiner's excellent, scientifically accurate and well-researched book Think Like a Pancreas for that). I want people who might know a bit about T1D, or who might know someone with T1D, to feel like this blog is a place where they can get factoids, tidbits, first-person narrative, in-the-trenches perspective, and of course my signature wit. Most importantly, I want people to feel like they actually learned something from this, especially if they're my friends and so T1D is now a part of their lives, too.

So without further ado, I present to you all, the definition of the word BOLUS:

Bolus: (Noun) A one-time dose of insulin, calculated by you (the PWD) in order to correct a high blood sugar and bring it down to normal range or to cover food that you are about to ingest. SEE ALSO: To bolus (verb)

If you're interested in more fun diabetes terms, my favorite D-blogger has a cool glossary here: http://sixuntilme.com/blog2/2011/09/diabetes_terms_of_endearment_e.html

And one last note, if there's anything else you're curious about, please please please don't hesitate to ask me! Drop a comment, or mention it to me in person (it shouldn't be hard to find me since I'm pretty sure the audience here is all close, personal friends). 

Saturday, August 15, 2015

Wise Wisdom

"I do not associate with people who blame the world for their problems. Because you're your problem. And you're also your solution."

Okay so yeah maybe it came from Bridesmaids but it still feels pretty relevant...

Wednesday, August 12, 2015

Diabetic Playlist

I don't own any rights to anything. But if you're a diabetic (or if you're not) you should still know about these songs.

1. A Tribe Called Quest "Oh My God". Because you too can be a funky diabetic. 

2. The Killers "Human". Sometimes after a hard day, you're asking yourself, are we human? Or are we dancers walking pancreases?


3. Aaron Carter "I Want Candy". This is on here partially because we all need to acknowledge and process our feelings re: frosted hairstyles. But also because, well, the title really speaks for itself.


4. Haim "Don't Save Me". First of all, just a wonderful, wonderful band. Second of all, in Taylor Swift's inner posse (no shame in the loving T-Swizzle game on this here blog). Third, they're a sister band and the youngest one actually has T1D. So that's rad.


5. Maroon 5 "Sugar". Another one where the title speaks for itself, but you can feel less ashamed about your sexual attraction to them because Adam Levine is maybe just sex personified. Especially in this screen capture here (kidding...or not?)


So there you have it. 5 songs. It's short. It's not really comprehensive, and I'm not too sure in what context these exact songs actually go together....maybe while you're having a low blood sugar and are too scatterbrained to notice that they actually don't? Or something? But this blog post has certainly got me curious what searching Type 1 Diabetes on Spotify will produce. 

Saturday, August 8, 2015

Confessions of a Guilty Diabetic Part 2

Okay I will add another, bonus confession to this one: this is not actually a new post. I wrote it at the same time as the last one, as a part of the same entry, but I thought things were getting a bit long so I split it. SO SUE ME. Okay, actually, given the way the world works these days, I feel like I should add: PLEASE DON'T SUE ME. It would be a waste of your time, anyway. My pump is the most valuable thing I own. Whoops! Another bonus confession....lucky you! I should probably just quit this intro paragraph now before I tell you my social security number. So here goes, confession number....whatever:


I don't carb count. Okay, new diabetics, don't throw away your hospital-issue "Calorie King" bible quite yet. I do carb count, in the sense that, over the past year I have strived (strove? striven?) to understand/memorize the carbs involved in most of my go-to foods and indulgences. And I do use that knowledge to help me make informed bolus decisions. But here's the thing, peeps. There is so much more to bolusing than just carbs. There's things you can see and calculate with, like IOB, and fat grams, sugar, and fiber. But there's also, EOB (my term for Exercise on Board, aka a workout you just did [metabolism running faster] or have planned), stress, fatigue, unexpected bus system crashes leaving you to walk home, etc. There is no perfect bolus. So in a way, I have given up. I'll admit it! I mostly look at my meals as sort of Large, Medium, and Small in terms of bolusing. Large being, high-fat, high carb bombs, for example a grilled cheese with tomato soup and/or french fries. Anything where you have dessert. Medium is more like, pretty high carb, moderate fat, some protein to calm things down. You've indulged but nothing crazy. Maybe a bit of pasta salad, or fruit salad, or a sandwich. Small (which is where I generally try to stay) is exactly what you'd guess. Lots of veggies, carbs mostly from legumes and/or fruit, protein-heavy and moderate fat. An example would be veggie chili and a salad or something of that nature.

But here's the thing that really helps me with any meal size, and that is pre-bolusing. Many times, I don't know exactly what I'm going to eat for lunch or dinner. But regardless of whatever ends up happening, about an hour beforehand, I use the advice I gleaned from this wonderful blog post by these wonderful people about carbohydrate absorption rates in order to do what I consider to be a pre-bolus. Most people do this about 15 minutes beforehand; however, I found that I was still experiencing considerable post-prandial spikes with that timeline. Upon googling around, I found the #DIYPS blog and it really answered a lot of my questions about that. So I set about testing pre-bolus times/amounts and recording the data and eventually settled on a routine that works for me. Yes it required a lot of eating the same meals at the same time and googledocs. But yes it was worth it. You should definitely try it if you plan on being a diabetic for a while.

So back to my not-carb-counting. Based on my earlier experiments, I give myself my standard "Hey I'm going to eat soon" pre-bolus (Note: I do not use this exact method when I'm experiencing out-of-range blood sugars) an hour or so before I eat. Then, when it's time to eat, I give myself a general bolus based on my meal size and contents. I generally call Large meals 60 grams, Medium meals 45 grams, and Small meals 30 grams. Then I eat. And that's really it.

I keep an eye on things via my Dexcom, and sometimes I need to give myself more insulin, or eat some fruit/juice/glucose tabs to keep things copacetic. But you know what? Even when I was religiously entering everything I ate into MyFitnessPal and sweating out all the details of exactly how many peanuts I was consuming, I still had to do that. I rarely got it exactly right, and now that I've relaxed, guess what? I still rarely get it exactly right.

Relaxing on my carb counting was right for me, because it allowed me to relax myself in general. Although I feel guilty admitting it, I felt way more guilty every time I blamed myself and my addition skills for falling down on the job. But you know what? You know who really fell down on the job? My pancreas. And my immune system. They're the ones who have the capacity to get this perfect. Not me.

Coming up soon: A follow up on this & how Afrezza can help/interact with this system

Wednesday, August 5, 2015

Confessions of a Guilty Diabetic Part 1

I feel that this is a safe space, in that, after a massive spike in interest in this blog due to a Facebook announcement, my daily blog views is safely back down in the 0-4 range. Google Analytics has breathed a sigh of relief, and so will I once I get all this off my chest. Maybe one day I will reveal this blog to fellow PWDs and feel shame once again, but more than likely I will simply click "revert to draft" on this one and guard it safely forevermore. So, as follows, here is one of my guilty confessions. And no, Usher fans, there's no unexpected pregnancy involved.

I don't turn down my basal insulin when I work out. Seriously. Unless it's late in the afternoon and I haven't eaten since forever and I have a plan for something super cardio-intensive, I just don't. It's way more trouble than it's worth to deal with the aftermath of a basal insulin decrease, for one. But also I pretty much don't really need to. Despite my literal sweat, blood (yeah I've been known to pop a finger prick spot or two by accident) and tears (ya okay not really those) during my power yoga/boot camp/dog-walking, apparently my body is just like "Meh. You could go harder." In my head, I rationalize it with terms like "anaerobic exercise" and "breaking down stored fat" but I can't lie, my pride gets injured sometimes.

Phew!! That feels better I guess, and if you're out there somewhere in the same boat as me, then, well woo hoo! Let's just sit here comfortably in our insulin-filled boat, with our pumps ticking away peacefully and not judge each other.


Saturday, August 1, 2015

Feel the Burn

So, I definitely unironically and unabashedly love the Fast & Furious franchise. There's just something so right about its cheesy wonderfulness, and the latest installment is no exception. Not to mention the touching tribute at the end.

However, that's not the scene that really spoke to me. No, the scene I identified with more is present in this gif: https://pbs.twimg.com/tweet_video/B1jFw36CUAAk9Lz.mp4. For those of you who are literally SO LAZY that you cannot click and watch a 2 second video, or maybe you have poor internet connection and it won't load, I will summarize for you. Don't worry, it's not really a spoiler here.

Basically, in this scene, The Rock (yes, both words capitalized) has a cast on his arm. I won't go into why, because, you know, spoilers. But there are bad guys to be fought. And The Rock has gotta fight them!! Because, The Rock. So what does he do? He's sick of being laid up. He's sick of the BS. He's sick of those doctors putting BS-y plaster all over him when he's THE ROCK and he's got BAD GUYS TO FIGHT. So he just, you know, mind over matter, flexes his incredible, The Rock-y arm, and flexes right out of the cast. I sh*t you not. Flexes that cast right off and trots off to fight and obviously defeat the baddies.

And I have to tell you, that scene speaks to me. Because I often feel as angry as The Rock at diabetes BS. Like when I'm trying to go a leeeetttle bit uphill on a hike and get totally foiled by a massive, double-arrows down zinger of a low blood sugar that I have to treat, meaning a mandatory pause and sugar break. When I have to eat a snack, right after a snack, because of an over-bolus. When I ignore students, miss my bus, or skip a meal. Basically any time diabetes makes me do something I don't organically actually want to do, I wish that I could just power on through. Flex my....pancreas? liver?..... and get on with my life.

It takes a huge amount of humility to say to myself, and whoever I'm with, "Wait." "I'm not okay." Because I don't want to scare them. Because they don't know the difference between a little not okay and a lot not okay. Because I don't want to admit that I'm struggling and not in control. Because I hate thinking that I've made the mistake. Why didn't I do a temp basal decrease? Why didn't I under-bolus? Why did I bolus at all? Why didn't I plan better? Why wasn't I better?

But really the question is, why isn't my pancreas better? Why, after all the love and attention and mindfulness and medicine and money and lost brain cells and sugar and exercise and vegetables and doctors and frustration and triumph and lessons learned and lessons forgotten and tape and bruises and rashes and blood given and taken, why is that still not enough? Why is my reward for each day to wake up (sometimes in the middle of the night) and do it all again? Why can't I just put mind over matter, for once

Saturday, July 11, 2015

The battle for territory

My OmniPod is amazing. Hands down, game changer. In terms of having a tiny plastic cannula and liquid-filled computer pod taped to your body 24/7, it is probably top-of-the-line, comfort-wise. It's discreet (except when it beeps which is you know...every two seconds...), wearable, and keeps me alive. All good things.

Same with my Dexcom. Discreet, wearable, mostly comfortable.

The only problem is that both are subcutaneous. Meaning that, they require fatty spots on your body for best absorption and certainly for the most comfort. Meaning that, every time you work out, it's a weird sort of tug-of-war in your mind. On the one hand, who doesn't want a six pack? On the other hand, every spot of muscle you gain is a spot that, while you don't quite lose, certainly becomes more difficult and painful to use for diabetes purposes.

Is my body what I want it to be? Or is it a vessel for my exterior pancreas? Because while I want the former, I certainly need the latter.


Sunday, July 5, 2015

A Precious Human Life

Every day, think as you wake up:

"Today I am fortunate to have woken up.
I am alive, I have a precious human life.
I am not going to waste it.

I am going to use
all my energies to develop myself,
to expand my heart out to others,
to achieve enlightenment for
the benefit of all beings.

I am going to have
kind thoughts towards others.
I am not going to get angry,
or think badly about others.

I am going to benefit others
as much as I can."

His Holiness the 14th Dalai Lama

Saturday, June 27, 2015

My spiritual connection to diabetes

I may or may not have mentioned on here before that I was diagnosed in a hospital a few states away from home while on a road trip with the BF. That's a story for another time. This story, at this time, is about my long and illustrious history with diabetes, and the sweet (pun intended) irony of my diagnosis.

From the very second the diagnosis "diabetes" was thrown at me, I felt relieved. Like, 100% so incredibly relieved. Something was wrong with me!! Something that could be fixed! I felt little shock, no anger, certainly no depression. Part of this, of course, I'm sure had to do with my sugar-laden blood and general foggy headedness. Part of it, though, had to do with, for lack of a better term, my spiritual connection to diabetes.

The story starts back in my youth. Like many young scrappy 80s and 90s kids, I was big fan of Kristy, Mary-Ann, Claudia, Stacey, and the gang aka the ever-popular kid's book series The Babysitter's Club. And as all good fans know, in book #3, The Truth About Stacey*, we find out that the truth about her is that she, you know, has diabetes. She starts guzzling water, sleeping all the time, sneaking candy bars, losing weight, classic. She denies it, her mom drags her to the doctor, mystery solved. And for the rest of the books, Stacey has diabetes. Well I was always more of a Mary-Ann girl myself (I know, I know, lame choice), but I never forgot the many lessons I learned from BSC and diabetes awareness was one of them.

Fast forward to college...the internet is popular, WebMD is rampant, and I'm going through a small period of (what I feel) is extreme thirst. I'm waking up to pee every night and I've lost weight. Am I exercising and hydrating more to compensate? My mind flashed back to Ann M. Martin's vivid descriptions of Stacey's symptoms...Or do I have diabetes? We all know which one WebMD told me...and what I made the mistake of mentioning to a few roommates/friends/family members in an offhand way. We all laughed it off, and I definitely didn't have diabetes. Then a few months later...I happened to make the same internet-based mistake and diagnosed myself with the potential symptoms of being on the autism spectrum....and the makings of a permanent inside joke were created.

I even (and this is the one everyone's really kicking themselves over) brought it up semi-casually last spring when I was feeling so sick. Aware of my reputation and previous diagnosis failures, yet unable to deny what the almighty Google had said when I had searched my symptoms, I attempted to discuss things with the BF and one of my closest friends. To be honest, I don't really remember this, but they do...and they assured me that when I tried to suggest diabetes, they laughed. In my face. And then I laughed too and said yeah it was probably ovarian cysts like usual. Because everyone knows that internet diagnoses are crazy!!

Until. Until one fateful day last summer when I called my dad (way less likely to freak out than mom) and told him, haltingly, that I was in the hospital, had been there for a few hours, and I had been diagnosed with Type 1 diabetes. He laughed. I laughed. It was awkward, because then he was like what??? and naturally very concerned. But eventually the message was communicated.

And with that, my spiritual link came to fruition, and while I in no way actually believe that I brought this on myself, it still felt weirdly right in a way. Like, yes....this belongs to me. And so when I said earlier that I felt 100% relieved, that's not completely true. I think I felt more like 98% relieved. And 2% proud that I had been right all along. Safe in the knowledge that all future WebMD diagnoses made by me will be given the respect they deserve.

*I want the world to know that I did not need to google the number/title of the book, I knew it by heart. Go me!!
**I also want the world to know that I do not think diabetes is awesome. And while I think it's funny that I felt a "connection" to it from a young age, actually getting diagnosed with it at a young age is of course no laughing matter.
***Also if you are ever curious, there is a comedian called Mike Birbiglia (spelling?) who had his WebMD diagnosis come true too!! So it really does happen, people...

Saturday, June 20, 2015

Me too!

"Ms. Gerber?"

"Hmmmm? Yes?"

"Ms. Gerber, I don't know if you saw me before, but when you were talking, I was giving you the me too sign. You know, when you were talking about how sometimes you get embarrassed doing diabetes stuff in front of new people. Or even in front of us! And you wish people weren't watching you, and you didn't have to be different. I was giving you the sign because, you know, when I fell down the steps last week and now I have these [editor's note: she is gesturing to several bloody scrapes and scabs] on my face. And sometimes I feel like people are looking at that and not even my eyes when I'm talking to them! So that's why I gave you the me too sign."

"Oh wow. I'm sorry to hear that you've been feeling that way! It's already bad enough you had to fall down the stairs, huh?"

"Yeah. I don't like it. But I thought about what you said. And it seems like it is making me a little braver. I mean, I'm not staying at home, like you said! And now if I ever have a friend who has scrapes, or even diabetes, or even something else, I'll know how she feels. And I'll always have candy for her just in case and I won't say 'ohhhh man you're so lucky!!'"

"Hmmmm, that sounds like a good plan. And I'm glad to hear you're prepared just in case."

Of course the conversation digressed from there....but man....aren't first graders magical?!? 

P.S. I'm not ashamed to say that I'm pretty proud of how I handled that teachable moment, too! Woot!

Monday, June 15, 2015

Stacks on deck, Patron on ice

So for the past few (9!!!) months I've been on antibiotics that have been absolutely hammering my liver. How do I feel now that I'm free to enjoy...er...adult beverages again?

Weeeelll let's just say that this song has never been more relevant.


Saturday, June 6, 2015

Clash of the Titans

#thatawkwardmomentwhen...

You're sitting in class (not the class you teach, but the one you take at night afterwards) reviewing for the credentialing exam you're scheduled to take in a week and a half. You and your classmates are in the middle of discussing an in-depth case study of a student, going over key terms, analyzing needs. Your professor is warning you to look out for case studies that involve IEPs or 504s. She reiterates what a 504 plan is--legally mandated testing accommodations for students with a physical disability. Accommodations can be anything from special chairs for sitting, large-print testing materials, to access to medical devices in the room.

And as you sit there idly, listening, trying to take notes, daydreaming, wandering....all of that...screeches to a halt. You realize...hey. She's talking about me. I need that. Because of course you need access to your CGM and at the very least your pump. At the very very least some sort of glucometer. Because you can't take a 4 hour test flying high at 250 or wondering every 10 minutes if you're crashing down to 25. Because you have a disability and you need accommodations and when you took one of these tests last year, and the zillions you took before that, for all of your educational history and entire lifetime, you didn't need this. So you didn't think about it. But now you do, it's all you can think about and you sit there alone in class with the realization that you might not be able to take this test after all. And just like that.

CRASH. Two of the biggest stressors in your life (your career aka your real life and your diabetes aka your actual, literal meaning of the word, life) smash into each other at an astonishing velocity. And what can you do? When you forget about the D in PWD?

And you know in the long run (even in the short run) it's not a big deal, you can reschedule, it's not what you want to do but you can do it. But why? It certainly doesn't feel like you that's being accommodated. You made the plans months ago. You've been studying for a while now. You are ready for the test. But apparently, all the shit you drag around with you on the daily is not. That is what needs to be accommodated.

And you need to get on the phone fast and beg and cry and finagle and hope and pray to get your accommodations approved in approximately 1/3 the time it promises you on the website. And you do, and it's fine.

But that's tomorrow.

That evening? There's just a crash, and a smash, and some numbers thrown in your face and the ticking of your pump that you can't just leave outside the door. 

Saturday, May 30, 2015

Diabetes 101

When people ask me about my diabetes (usually while I'm explaining my glucagon kit or awkwardly bolusing in front of them), I struggle with giving a good answer. On the one hand, I don't want to leave them with the impression that it's simply about sugar. On the other hand, I don't want to overwhelm them with a loooooong, drawn out, semi-scientifically accurate response pieced together from my doctor's visits, personal experience, and internet research.

If I had all the time in the world, though, this is what I would say. Who knows what I would say a year from now, 10 years from now, I'll probably still have diabetes then so I'll get a chance to find out I guess.

When people say, Does Type 1 mean you were born with it? I would say this: NO HELL NO!! No one was more surprised than me to discover that, at the ripe old age of 24, I had a disease with "Juvenile" in the name. Type 1 means this: Normally, your pancreas produces cells called beta cells. These cells contain, among other things, a hormone called insulin, which "unlocks a door" aka "signals a receptor" in your cells (which cells? I still don't fully know...) to take in glucose from your blood whenever you eat a meal with carbohydrates in it (the carbs are broken down at varioius rates and then flood your system as glucose). These beta cells also contain (and this is a growing list, I might add), a hormone called amylin, which controls the release of glucose into your body and helps you get that satisfied, "full" feeling after you eat. They also contain something (name??) that helps you absorb potassium, a key vitamin (mineral? nutrient?) that helps keep your heart rythmic and your brain not-swollen, among other things. When you have T1D, it's an autoimmune disease. Meaning that something (gluten before age 3 months? infection? rotten luck??) turns your immune system on and I mean TURNS IT ON. So now it's going crazy, attacking those very same beta cells and killing them just as fast as your panc can produce them. At first, your panc keeps on trying and produces beta cells at a normal rate, which then just keep getting killed off. AKA your "honeymoon period" adjustment into diabetes, where things are a lot more manageable with a lot less insulin. But over time, your pancreas gets tired of this shit and stops producing beta cells at all. So you're totally deficient. Insert something about a c-peptide test here, which I'm not really sure what that is, tbh. So for me, this basically means: something happened. Immune system on, beta cells dead, me in hospital, artificial insulin.


When people ask, So what is insulin? or So you don't eat sugar anymore? I would say, also, NO HELL NO. Sometimes I even wake up in the middle of the night to eat sugar, pure sugar, which is not a habit I was previously into. The way I think of it, is like, it's a BALANCE. So when you have sugar, which, I repeat, is broken-down carbs, any kind of carbs, including super-healthy high fiber/high protein cereal, fruit, nuts, and a lot of other things besides just candy and cake, enter your body, unless I do something about it manually it's just going to float around in my bloodstream and make me feel crappy. So enter the insulin boluses (aka doses) to balance this sugar out. Because your body needs carbs as an energy source, so giving the proper amount of insulin should balance these carbs out and allow them to enter your cells and give you energy. However, talk about easier said than done. There are many many many MANY oh did I mention MANY variables that affect how insulin, carbs and your body interact. Therefore this is less than an exact science, especially when you add in the human labor. So sometimes, due to miscalculating, or unexpected exercise, or illness, or bad luck, or a south-easterly breeze, there's too much insulin running through my system, looking for glucose to suck up. When there's none there, that's where the problems (read: dizziness, anger, general symptoms of starvation, fainting, seizures) start. So that's when I need to chow down on the sugar. And manipulate my basal doses. And make a million other small decisions based on a variety of information in order to save my own life.

What people don't ask (but should) is What does affect your blood sugar levels? My answer would be, virtually everything. Stress, illness, the slowness of injected artificial insulin as compared to the onset of food (meaning that timing is everything). Emotions, exercise, your period, medications, where you place the injection site for your insulin pump, whether or not you have eaten or given insulin recently.

When people say Yikes! That's a lot of shots my answer would be yes, it is. And no, they don't all hurt but a significant portion of them do. And in a non-self-pitying way, I can admit that that's not great. And I can also see that it's a lot less shots than I would have had to deal with 15 years ago, so I try to keep that in mind as I force the CGM dagger sensor in.

And finally, my personal favorite, when people say Wow! I could never... my answer would be, sure beats the alternative. In fact, I've LIVED the alternative, and I can say for certain that life with insulin, and carb counting, and hypoglycemia, and stress, and injection site scars >>>>>> life without insulin. 

Saturday, May 23, 2015

Monster

They told me it was insulin, water, and potassium in those I.V. bags.

But to me, it might as well have been Monster-Energy-Rockstar-Superfood-Protein-Caffeine-Awesome Drink. 

It might as well have been my life back, in a bag.

Monday, May 18, 2015

Afrezza User

After reading initial excited reports here on the interweb, I spent the last few weeks dutifully jumping through the required hoops and I finally got my hands on some of that sweet sweet Afrezza magic dust. On a tangent here, while it's true that the daily pricks and pokes of diabetes are tough, turns out a spirometry exam is TOUGH AS SH*T. Like, disappointed looks from the technician as she explains for the 14th time that I'm "microswallowing. Like doing these really tiny little swallows...anyway the machine can't read it?" So I, nose running, eyes watering, still unclear on what microswallowing actually feels like and how to stop it, rubber hose and scuba mask mouthpiece shoved into my mouth prepare to exhale...exhale...shoot it out...and HOLD HOLD HOLD for flipping ever...again...

Anyway. That semi-scarring incident behind me, I earned myself the golden ticket. The magic juice. The incredible, inhalable....AFREZZA. And I have to say, so far, the hype is not completely wrong. Even though there are fairly few PWDs on it so far, I think it is going to be pretty popular by the end of the year. If people can stick it through the spirometry, I guess. Here are my thoughts so far:

CONS:

  • Suuuuuper awkward in public. I've gotten used to quietly beep beep booping away in the corner with everyone else oblivious to what's happening. Of course I'm pretty nonchalant about doing finger sticks, but people are generally cool with that because it's familiar. We've all seen the obesity documentaries. We know what diabetes is. But shoving powders into a plastic whistle and doing your best Snoop Dogg impression? Attention grabbing, to say the least.
  • Dosing is confusing, to say the least. It's just in and out so fast...it's hard to know how much is actually going "in." And it doesn't seem to hang around very long, so it can lead to some roller-coastering around mealtime. Some people have recommended doing a pump bolus and an Afrezza bolus...I'm still investigating. 
  • Still have to wear a pump--for basals, for food bolusing (because I'm still figuring out the dosing, I mainly use the Afrezz' for corrections). So that means I'm a whistle-blowing, ever-beeping cyborg now. 
  • It doesn't keep for very long (although I haven't tested this) but once you open a foil pouch (which contains roughly 10 blister packs of 3 cartridges each), it's only good for 10 days. And it takes up more space in your refrigerator, too. 
  • It's hard to keep track of--I rely on Diasend to help me manage things, but since I'm taking less pump boluses and there's no way to automatically upload my Afrezza use (and no app that lets me upload all my data plus add in manual timestamped notes in once place), it's messing with my organization. And since I'm also Type A, in addition to Type 1, I don't love that. 
PROS:
  • It works. It works. It works, it works, it works. I CANNOT say that one enough. It just does. Wicked post-prandial spikes after breakfast? Accidental snacking binge at the staff meeting? random CGM delay that shows you at 113 --> one minute and 181 double arrows up 5 minutes later? SHAWTY DON'T PLAY. One 4U puff and things are smoothing out. No rage-bolusing. No vigorous, frustrated walks or bike rides that BF is forced to endure. No 5 hour snooze alarm on my Dexcom going off to remind me that I've been out of range for way too long. We're talking results within the half hour. 
  • It works, just the right amount. As in, this weird flattening out effect where I never seem to drop below 65 with it, as long as there's little to no other insulin in my system. And then I usually drift gently back up into the 80s or 90s. It's confusing, sure, and I sometimes treat for hypos that never happen...but still...
Overall, I'm pretty pleased. On the one hand, I have to admit I appreciate that thinking about the wicked BG consequences often holds me back from over-indulging on the treats. And having Afrezza around certainly mitigates these consequences, which makes me a little worried that I might fall into some bad habits since big bad A is there to come save the day. On the other hand, "pancreo-typical" folks don't have to suffer hours and hours of guilt, misery, and potentially life-threatening hypoglycemia (due to fervent rage-bolusing) after polishing off a bag of chips. So maybe I shouldn't either...especially when often the numbers have nothing to do with my own personal habits/choices and instead have everything to do with my pancreas not functioning. 

And essentially, isn't the modern lingo in diabetes today talking about "improved time in-range?" Well, Afrezza has certainly given that. Never fear, my trusty Dexcom still buzzes quite frequently. I don't have those flat, beautiful graphs that some other new converts have been showing off all over the internet. But while things may be a bit bouncing around a bit more, there's also a lot of time in the white to show for it. 

I just picked up my "real" first supply today...one month's worth. So far it's only been a week and goodness knows after only a week of subcutaneous insulin I was a hot mess. I'll check back in about my progress soon!

Saturday, May 16, 2015

This time last year...

Has become a common refrain in our household. "Remember when?" has popped up a lot as well, because as the weeks start ticking down towards my first dia-versary (spelling?), this time last year I was, well, sick.

It's fun, but also upsetting sometimes. We went down to visit the BF's parents, and we remembered a hike in the canyons that I could barely make it back up out of. I remember drinking all of my water within the first half hour; he had to ration the rest from me so we had some for the return. I remember the pure frustration of feeling so exhausted even from going downhill. I remember the peculiar sensation that my legs weren't holding me up--my legs felt as jelly-ish as if I'd just run a marathon (well actually for me as a non-runner more like as if I'd just run a 5K...) and my ankles jolted with each step. I remember tripping over each stray rock, my feet not lifting as high as I thought they would. I remember pure disbelief when our phones told us the hike had only been 4 miles. I remember napping in the car on the way home.

When we drove to get food, we remembered how I'd drunk the entire extra-large jamaica meant to be shared among his family. And how I'd gotten seconds (no one had ever thought to ask for a refill before!) and drunk most of that, too.

I remembered stumbling around their house each night, 2 or 3 times, restless and needing to pee.

It was after this trip that I went to the doctor for the first time, suspicious that something was wrong. Unfortunately, I have had ovarian cysts before, and so I blamed my symptoms on that (turns out ovarian cyst symptoms pretty much run the gamut and can explain away almost anything) after they found one on my ultrasound. That poor, benign cyst got the blame for everything, right up until they started pumping insulin through me in the emergency room.

But mostly what gets me about the "remember this" game is how much I don't remember, or how clouded my memories are. The spring of last year passed in a cloudy haze for me, and most of my memories are tied into exhaustion or centered around what sugary treat I was desperate for.

Sometimes when I want to refer to that time, I'll say, "Remember when I had diabetes and..." First of all, because "Remember when I had undiagnosed diabetes" is longer and therefore less fun to say. And second of all, because if I think of diabetes as a disease, and of a disease as feeling sick, then I have never felt so sick as those days. 

Saturday, May 9, 2015

One of my least-favorite acronyms

UTIs.

Not the most fun topic for this here blog, but sadly a very real reality in my day-to-day diabetes life. Is anyone else (females only I guess) dogged by these? I swear I take probiotics and a cranberry supplement, as well as drink more water than a drowning fish, but still every time I have a pump fail or a couple of sticky 200s in a row, there I am again drowning in nitrofurantoin...honestly probably my #2 most-relied on drug after the Humalog.

It's not a huge deal, but it's certainly not ideal so I thought I would note it here...hopefully it's just part of the diabetes hazing and it'll be over once I'm out of the early days. 

Saturday, May 2, 2015

These are a few of my favorite things

When the hypoglycemia strikes, when the boluses sting
When I'm feeling sad....
I simply grab one of my favorite things
And then I don't feeeeel sooooo baaaaaaaad!

In no particular order, here are some things that keep my life with diabetes in order.

*Opsite Flexifix tape: Learned about it (like so much else) from good old sixuntilme.com...two words my friends: GAME. CHANGER. Especially for the OmniPod...no more catching my pod on a doorway or clipping it when I'm pulling on a shirt...just a strong base layer of this all over and I'm good to go. It's also amazing for extending the life of my CGM sensors and keeping sweat and water out (which I'm all about since omfg they hurt to put on). I seriously cannot emphasize this enough, and it's the main reason I'm writing this post for future me...if for some reason I get amnesia now at least I'll never forget this stuff. Oh and did I mention that, unlike the rest of diabetes, it's actually a pretty good bargain? $8 for a ginormous roll that's lasted me 4 months and counting...

*Luna Protein bars: Not the regular ones, but the PROTEIN ones. They are the perfect snack for when I'm lightly drifting down with some IOB, or when I want to go for a nice long walk. Under 200 calories, relatively delicious flavors, enough sugar (12 g) to pump me up and protein to keep things easy breezy and lack of post-prandial spikey. When things are a bit more serious (i.e. low blood sugar or going on a hike) I'm all about Larabar Apple or Cherry pie flavor. Also under 200 calories, they are basically smooshed together dried fruits and nuts. Quick energy + fats to keep it going. Also extremely delicious...I used to rely on the carrot cake flavor but it's just so good that I kept eating it when it was non-essential...

*Nightly yoga fix: www.yogaglo.com. Full disclosure--I accidentally originally typed togaglo.com which is another type of fix altogether I suspect. In my head, I'm picturing disco-themed togas or toga-themed discos. Neither of which I'm actually trying to talk about!! A personal strategy for keeping my A1C down is to try and get my nights pretty stable...if I can keep things cool after dinner and up until breakfast, that's a sweet sweet 10 hours or so that my BG is in range and I'm doing absolutely zero to maintain it...which is almost half the day in range with little to no worries :) To accomplish this, I try to stick to a relatively low-carb, low-fat dinner, not eating after 8 pm, and a gentle or more vigorous flow to help me relax, unwind, and maintain my sugars. Plus also did I mention relax and unwind? Turns out working, going to grad school, and managing a new diabetes diagnosis is a lot. So bring on the chaturangas and lion's breath, I say.

*This tip for managing my breakfast bolus. I eat essentially the same breakfast every weekday, and I test my fasting basal morning rates every weekend when I routinely sleep through my weekday breakfast time. Meaning that, breakfast is a great time for me to experiment. I was feeling really frustrated by my morning blood sugar spikes that would occur despite my steady fasting BG and relatively intense IC ratio. There was no reason that nonfat plain yogurt and 2/3 cup of protein and fiber heavy old people cereal should send me skyrocketing into the 300s without constant maintenance. And oh! the rage bolusing...and the subsequent roller coastering...not so fun. Until I read this. Which makes oh so much sense...overnight fasting=not a ton of insulin floating around in the body=no insulin hitting the body until 45 mins or so AFTER eating (since I was doing a 20 min pre-bolus)=my poor little basal insulin trying to do all the work=basal insulin FAILING to do all the work=crazy high blood sugars that won't crack thanks to my sensible ingestion of protein. So now, I set an early alarm, bolus, sleep, get ready, eat, and keep a sweet log of what happens to me over the next 4 hours. So far, the results are extremely promising! Even when I do start to drift up, it's much easier to manage with say, a temp basal increase rather than a whole other bolus which can lead to dropping low a few hours later...This is probably worth a whole post on its own as I attempt to expand it into practice with other meals.

So that's my diabetes essentials as of now so to speak. Of course there's so much more...this post has really had the opposite effect of catharsis because now I'm thinking of so many other things I want to write about...so I guess I should say, to be continued!

Saturday, April 25, 2015

Mad Scientist

Who am I as a diabetic? is something I am struggling to figure out. Not as in, who am I now that I totes around several thousand dollars worth of medical devices strapped to my skin? But more as in, what type of diabetic am I? What approach am I taking, do I want to take, do I think I will take, towards this new...characteristic...of mine?

The answer, at least so far, is a bit bizarre...a bit uncharacteristic, to be honest. When I was a kid, I was NEVER the type to go nuts for the science toys. Kids experiment kits? Mehhhhh. Make your own goo? I'd do it once or twice, but then lost interest. I wasn't deconstructing and reconstructing radios and computers. The power button was good enough for me...as long as it worked, I didn't really care how it worked. I had interests, of course, but I was not a process-based child.

Now that my body is my own experiment though? I. Am. Fascinated. I CANNOT get enough. I loooove reading through diaTribe, tudiabetes, #diyps and other blogs and how-to guides. Tips, tricks, suggestions, new technology and breakthroughs, I can't get enough. I got my first smartphone in 2014, and even that was begrudging. I was the 2nd person at my endocrinologist's office to get a prescription for Affreza. My iPad can often have up to 40 apps begging for my attention before I finally get around to tapping "Update All," and even then I have no clue what's happening nor do I really care. Yet I regularly update my DiaSend account every week, and spend at least an hour poring over the data and evaluating trends. When I went to my primary care provider, I had no idea when I last had immunization shots. Yet every time I go to the endo or educator, I go over my time limit yapping about my trends, analysis, and jerry-rigged fixes.

This window into my body's magical proceedings is just that interesting to me, and I have no clue why!!

Last night we listened to this podcast about a 19th century mad scientist and his obsessive experiments on a man with a fistulated stomach, and I couldn't help but feel an awkward tinge of recognition. This scientist, with his rare & unique opportunity to look directly into a human stomach, spent hours and hours, introducing basically every variety of food in the American diet at that time into the stomach and recording what happened to it in incredibly tiny time increments. I look at my 5-minute incremental measurements of my blood sugar and my eating logs and insulin pump data obsessively. And we are both so fascinated and obsessed! Which is why I guess, if this were a BuzzFeed quiz, I would have to say that my diabetes personality type is definitely "Mad Scientist." Granted, he was at the forefront of human biology discoveries and was literally looking at something that no one understood, whereas I'm simply re-treading ground that endocrinologists and other PWD understand all too well. But still. Can I help it that I'm fascinated with myself?

Come to think of it, after reading that last sentence...maybe my personality is more "Narcissist" than anything else...whoops!

P.S. What I'm reading now.

Saturday, April 18, 2015

That unexpected sense of camraderie

I've mentioned on here that I am kind of a diabetes "lone wolf." If I haven't mentioned it, well, the very fact that I'm blogging to an audience of zero should probably speak for itself. I have gone to exactly one diabetes meetup, and while it was perfectly nice, and probably something I'll do again, that makes exactly 4 other T1D people I know in real life, and exactly 0 that I've met more than once. Add that to the 0 friends I've made online (touche, okay, I know that I haven't exactly been trying too hard...) and I don't get a lot of socializing with other non-pancreatically-inclined folks.

Which is why the little things make me smile. Like when you go to add a hypo treatment on MyFitness Pal and see that Glucolift tabs, Cherry flavor, have already been added to the database.

Just a fun little shiver of recognition, that can certainly help when you're feeling the hypoglycemic blues.  

Friday, April 10, 2015

#FBF

It started around this time last year.

I think the first thing I noticed was at my friend's bridal shower, the dress I'd bought just a few weeks earlier was already a bit looser on me. I'd been snacking more lately, too, finishing kid's lunches at work and clearing out the cabinet of our emergency snacks.

I went through phases like this, I assured myself. It was probably PMS. At least you're losing weight I thought smugly, when I bothered to think about it at all.

As I applied for new jobs, of course my mouth was dry. I was nervous, after all.

I'd always been a thirsty person. I often had to pee during the night. No big deal that now it was every night, sometimes twice a night.

There was more to come, of course. Now, it's become a fond joke in our household--the rattling of antacids in my purse that signaled my approach; my absolute trudging and utter exhaustion on simple 5 mile-hikes; the times I fell so deeply asleep on the train that I missed my stop; my secret fro-yo and Slurpee runs; the abandoned workout routine; the perpetually sunburned face; the days I spent in bed, binge-watching TV and playing Bejeweled.

I remember all these things clearly, of course, and more. I was slipping into diabetes for four long months, but I don't need to provide a WebMD litany of symptoms here.

What I remember most, though, was feeling completely and utterly empty. Resigned. Too exhausted to care about anything I'd ever cared about before. Everything was a burden and, what's worse, is that I assumed that it would just be that way forever. I guess this is what getting old is like. I guess I just don't like anything anymore. 

I read a kook doctor's book about diabetes, and he said that it's called diabetes mellitus because, while untreated, your body is literally melting into sugar. I'm not sure what I was melting into but it mostly looked like a desiccated, bony mess, curled up on the bed, sleeping 15 hours a day.

I don't have a pithy ending for this post...I feel a million ways at once when I think about how far I've come in the past 12 months. Grateful to be alive again, to be totally wrong about everything, relieved that aside from my pancreas, I am still me. Tired, when I think about all the time and stress and brain fog and body pricking I have endured and will endure. Sad, when I think about my students' last months with me and how lackluster I was. Ashamed, because there is no truly blase way to check your blood sugar in public. And of course, the ever-lingering sense of what-the-f*ckness...the utter confusion of going from completely, 100%, top-of-my-game healthy to someone who is covered by the Americans with Disabilities Act? There's definitely a lot to think about these days.