Personal limits.

GuiltI was talking with a patient at a diabetes event on Saturday, and we chatted about CGM, pump sites, and how awesome it was to have a sunny day in November.  I noticed he was chugging his way through the bottled water in his hand at a rapid pace. Once the last swig was down the hatch, he copped to the reason for his voracious pace.

“Man, not enough water in the world right now!” he said “I’m thinking that cinnamon rolls were not the best idea for breakfast!” he added with a laugh.

“Oh man, those are a beast to bolus for!” I replied.

“Seriously though,” he said. “I took a lot of insulin and I still ended up over 600mg/dL.”

I felt my face make that “Holy s%$&” look and quickly tried to back track to a more casual stance.

“Oh.Um. Wow, yep that’s pretty high. Hey do you want another water bottle? Also I have ketone strips in my bag, if you want one?” I asked.

He gave me that “Seriously? Calm down” look.

“Nah it’s coming back down, I mean I bolused again you know? It’s all good!” he said with a laugh.

In my mind it was not all good. In my mind I was ready to kidnap this full-grown man and drive him straight to the ER and get him started on an IV insulin drip and call his mother to let him know that he really should talk to a CDE about carb counting one of these days and I don’t want to say that anything is off-limits but really man cinnamon rolls? There’s not enough insulin in the world to manage that the right way and……wait a second here, Miss Judgey Pants. This is not your diabetes. This is his diabetes. And just because a 600mg/dL would be cause for the ER for me, that doesn’t mean it is for someone else, and it doesn’t mean I know the context of why and how he ended up with a high BG, or why he feels ok with it.

Remember this post about me going running in the 50mg/dL range for two hours? There’s a lot of folks that would call that crazy and reckless, but I was ok with it. I felt safe, I felt like I had it under control, and I would have been pissed if someone had told me I was being dangerous. Being over 600mg/dL isn’t a good thing – and that guy knew it. And running for two hours when you’re under 50mg/dL also isn’t good and I knew it too. But cause for concern has to do with our own personal limits and comfort levels, not what someone else thinks is ok.

There’s a phrase: be kind, for everyone you meet is fighting a hard battle. That’s twice as true for those of us with diabetes.

Let’s do shots. But not THERE!

OUCHHaving diabetes, whether you pump, CGM, finger-stick only or use multiple daily injections (MDI) means one thing for sure: you are a human pincushion. Talk to someone even month into their diagnosis and they will tell you they’re so used to sticks at that point that something piercing your skin becomes as regular as brushing your teeth. But get a few years into that diagnosis and another issue starts to arise which is how using these sites over and over again can affect the skin and tissue in the area. I’ve built up scar tissue on the outside of my left leg up near my hip where I injected for the 15 years I was on MDI. My left ring finger (everyone has a favorite finger!) has significantly more callusing than others. And my tummy is showing some wear and tear from my CGM while my lower back where I wear my pump pods is becoming a bit dappled and discolored.

One way to combat these issues is to consciously rotate through a variety of sites with all of my sticks. So on Wednesday, I decided to try my CGM sensor in an alternate location that I had seen other people wear it: on the top of my right thigh. Fresh meat! I got the sensor out and cleaned a nice, unmarred swath on the top of my leg, peeled of the adhesive and….totally balked.

Here’s the thing about having diabetes: just because we have to take shots and continually pierce ourselves doesn’t mean we’re comfortable with all injections and all injection sites. We get comfortable with our own personally selected “spots,” and other areas can seem totally foreign and creepy for injections. For example, I knew a guy in college who would inject on his right leg, just above his knee where his thigh muscle started. It gave me the heebie-jeebies every time! But, he’d cringe when I’d bolus into my upper thigh spot. And he couldn’t even look if I decided that due to an wardrobe limitation or something to inject in my tummy (that one bugged me too actually, but I’ve always been ok with my CGM there). It’s so funny how us folks with diabetes will get used to injecting ourselves over and over again…but not there!

After a deep breath and countdown (like I was about to bungee jump off a cliff or something) I was able to deploy the needle for my sensor right into my thigh and get the thing affixed. It didn’t hurt any more than another location, and I’ve enjoyed giving my tummy a break for the week. But it surprised me how much that location challenged me mentally!

What about you guys? Where are your spots? And which ones give you the creeps?!

Standard Hotel Room Sleeping.

Just another night for one lonely business traveler with one too many beds in her hotel room. What’s a gal to do but use bed number two for all of her devices and potential low BG treatments? And if you think I already have too much hardware between the phone, CGM, and pump controller, consider this: I took the photo with my fourth device, my work phone.

I seriously need the Bat Belt for all this crap…..

 

Hotel Sleeping

Toddler Logic.

A weekend with my nieces, ages two and five months are full of questions. Mostly they’re from the two-year old whose vocabulary expands exponentially by the day:

“What’s in your coffee cup?”

“Read Larry Gets Lost in Portland again?”

“Outside? To the park?”

These are all valid questions with easy answers: Coffee, Yes, and Let’s go!, respectively. On Saturday evening, I went into the kitchen to change my insulin pump. I needed a toddler-free zone where I could lay out the instruments needed to change my site, including the giant syringe used to fill my pump pods. I tucked my shirt up under itself the way I usually do when I change my pump site so I can have better access to my lower back where I wear my pods. My CGM sensor was on my stomach, exposed in all it’s plastic-and-tape glory. I heard the padding of little feet approaching.

“What’s that?” my niece asked, eyes fixed on the sensor. Her question had caught me off guard. Do I just tell her what it is? Do I tell her it’s medicine? Do I tell her that it’s something for diabetes, knowing that’s beyond her comprehension and neccesity of information right now? It didn’t bother me that she asked or noticed, I had just genuinely never thought how I’d answer that question for a kid, and especially a kid that I love and plan to spend a lot of time with. I found myself stumbling over an answer while she filled in the blanks on her own.

“Is that a sticker?” she asked, in total seriousness while I stalled with “uuuummm, it’s uuuummm”. It’s amazing how kids build the world around them, bouncing relevancy off experience, feelings, and kid-logic. I was about to tell her “yes” – because I certainly didn’t have a better answer in that moment -when my sister piped up from the couch in the family room with perhaps the best, most fitting answer that was so obvious I hadn’t thought of it.

“It’s just something Aunt Lex wears on her stomach sweetie, that’s all.”

The answer completely sufficed the inquiring two-year-old mind, and after I changed my infusion site,  we went right back to reading about The Gruffalo in no time.

And at the end of the day, that’s really all it is.

 

 

 

Do you play it by the numbers? Or hooked on a feeling?

photo (10)I blogged a few weeks ago about a well-known endo in the area saying that according to an independent study he did with his patients, folks who override their smart pump suggestions 20% of the time do the best with their management overall, as measured by A1c. Meaning, patients who skip over the “suggested bolus” amounts and make their own decision about how much insulin to take only do this 20% of the time for the best success. They use the features of their smart pump to make decisions for them the rest of the time by plugging in carb counts and a blood sugar. The 20% of the time they don’t we can assume the patient is probably taking something into context like exercise, being ill, or something else that they know will affect the outcome of a bolus.

What I found fascinating about this was that the number was so exact: 20% of the time. Not 25, and not 15, but exactly 20% of the time. I think this surprised me because I always think of diabetes as such an imperfect science, full of surprises and nonsense. Assigning such a solid number to the recipe for success seemed impossible. But he ran this study with enough people to make it count. And recently, another doctor asked me by what percentage to I pull back on my bolus or my basals when I decide to have alcohol with my meals, because of its glucose lowering effect. I told him it depends and he said there must be a percentage that I’m using as a guideline. I had to tell him that maybe there should be, but there isn’t. For me, I take everything in to context and then make a decision. And I am the first to admit that this isn’t the best practice, because hey, those features are there for a reason. I seem to always feel that I know best but in reality, I could use the cool features on my pump every once in a while for a little help, ya know?

So my question for the crowd is also about numbers: what percentage of the time do you “follow the rules?” And what kinds of rules are they? Do you follow the “rule of 15″ for lows for example? Do  you let your pump make almost all of your calculations? Or are a chronic overrider like yours truly?

The Whole Holiday Experience.

GingersHalloween: It’s the first in of a series of holidays that take us screeching through what remains of the year in rapid succession. Halloween hits, then all of a sudden it’s Thanksgiving, Hanukkah, Christmas and you’re shouting “Happy New Year” a little too loudly after downing three hot toddy’s because you and your friends decided to hike into the woods and celebrate around a bonfire in 30 degree weather…oh wait…that last one was just me? Right. Ahem. But you know what I mean – Halloween happens and then it’s all over. And also, it seems to kick of the season of food issues/challenges/guilt/compromises for many of us with diabetes.

The days get shorter, the weather gets colder, and the ability (and will) to squeeze in a jog before work wanes a bit. Instead, it’s tempting to hunker down and cook up a storm with family and friends. I’ve definitely made some of my most lasting memories while cooking and dining on the meals that go with all the great fall and winter holidays. But I also remember as a newly diagnosed kid the feelings that went along with navigating this whole diabetes thing while still trying to feel “normal.” Rationing the candy I collected on Halloween, with me secretly hoping I’d go low so I could eat all the Milky Ways in my bag with abandon. Asking my grandpa (himself a retired endocrinologist) if I was allowed to have a cookie from my Great Aunt Florence’s famous cookie Christmas tree and him, feeling badly, saying “ok, one cookie.”

The fact is, many of our holiday celebrations revolve around food. And although I’m now an adult who is allowed to make her own choices about what I do and do not decide to eat and bolus for, there’s still a lot of guilt and mixed feelings that come with it. I’m a big “experience” person. I want to get in there and do all the things you’re supposed to do with an experience: I like carving pumpkins and singing Christmas carols and watching The Grinch on Christmas Eve. And I like all the fun cooking, meals, and foods that come with the holidays – I don’t like feeling like I missing out or modifying the experience. And although I’m generally able to carb count, track, and bolus adequately for things I want, that doesn’t mean its easy to do – not by a long shot. For anyone who has ever tried to figure out how to bolus for latkes while taking in to account the that you’re also drinking a holiday cocktail and going for a walk around the neighborhood to see Christmas lights and battling a slight winter cold, well,  you know it’s simply not that simple.

I have a few memories of times when I was a kid where I knew that my parents were modifying the experience I was having, like rationing the candy at Halloween, but I don’t recall having real hard and fast rules about things. We kind of managed on the fly. There was a lot going on in my house(s) at that age and diabetes wasn’t always at the top of the list.

Do all of you have an experience from life before and after diabetes where you remember how things changed for you? And do you give yourself a pass during the holidays, or try to stay on track? Does it make you upset when you feel like you’re missing out on an experience, or do you feel good that you’re not going to “suffer the consequences?”

Super CDE.

photo (9)One thing I love about my job is the fact that I get to be all up in the diabetes world every single day. I talk to patients, doctors and CDEs for a living, and we all have one thing in common: managing diabetes. Interacting with providers feels like I’m with the band, even if they don’t have diabetes. And sometimes, they can truly save the day. Like Tuesday, for example:

The scene: A certified diabetes educator’s office in Washington state.

The goal: Get her trained on our product!

The characters: Aforementioned CDE and myself, Alexis, with at least four units of insulin on board in varying sections of their peak time and duration of action. This was due to substantial rage bolusing for a 185mg/dL that would not. Come. Down. Damnit. Until then of course, when all my boluses had caught up with each other, right as I walked in to my meeting. I sat across from her to begin our training and pulled out my CGM receiver to check in before we started:

90mg/dL, arrow slanted decidedly down. Crap.

“Oops, well, as it so happens, my CGM is letting me know that I need to eat something, looks like I’m trending down right now,” I said to her.

“Oh yeah you are,” she said, eyeballing my CGM. “Do you have something with you?”

“Of course!” I said with all the confidence in the world. “I always have something with me for lows.” My hand fished around in one pocket of my work bag for the GU pack that’s always in there…always except for right now…damnit where was that thing!? I reached to the side pocket for my backup – a tube of glucose tablets. I pulled the tube out. It felt suspiciously light in my hand. I popped the top and the glucose dust floated out but alas, there were no tabs behind that sugary smokescreen. Empty.

“Um, well,” I started. “THIS is embarrassing. Here I am a Type 1 of 21 years, in a CDE’s office about to train her on a diabetes device and uh…..no more glucose tablets,” I said while shaking the empty tube upside down.  “Do you mind if I run out to my car quickly? I have more tablets in there” I said, totally mortified.

I mean SERIOUSLY? Did it have to be in front of a customer, and happening right now just as we were about to start our meeting? I know I know, she’s a CDE and of all people she will understand but she’s still my customer you know? I always want to portray a person who is in control, professional, put-together, and especially, on top of her diabetes management at all times to my customers. I know it’s not a big deal in the grand scheme of things it was just one of those “why now?” moments. I was about to get up from my seat when she stopped me.

She smiled. “Alexis, don’t you know you’ve come to the right place? What kind of no-good CDE would I be if I didn’t have something for low blood sugars in my office?”

She stepped over to one of the cabinets and grabbed a few things inside and then laid my choices in front of me: raspberry, fruit punch, grape, or classic orange glucose tablets. A whole rainbow of solutions for my bonehead moment.

“Take your pick!” she said, smiling. “And don’t worry, it will be our little secret.”

Cure vs. Cure.

CellThere’s been a whole bunch of buzz lately about this project out of Harvard, claiming a breakthrough in stem-cell technology. This could all translate (and by “translate” I mean don’t hold your breath – I’ve heard they’re just five years away from a cure for the last…22 years) to a means by which people with Type 1 diabetes could get new insulin-producing beta cells implanted so they can once again make their own insulin. They would be, in a word, cured.

Meanwhile, also on the east coast, you have the Bionic Pancreas project headed up by Dr. Damiano and Dr. Russell which uses CGM and two pumps (one with insulin, one with glucagon) to automatically regulate blood sugar using devices. Patients using the system would for the most part be on auto-pilot. In the sense of not having to think about diabetes much or at all would also be. They too would be, in a way, cured.

Which brings us to that very important question of: what really constitutes a cure? Is a mechanical, bionic solution enough? If the artificial pancreas system was perfected to the point that you didn’t have to do anything except wear a device, is that considered “cured”? Or, is it only a cure when there’s no need for any sort of intervention because your own body is back to work? And where does prevention fit in to all of this? What if tomorrow they invent a vaccine that prevents Type 1 from ever developing? What would that mean for those of us living with diabetes today?

Where do all of you weigh in on a cure? Is a bionic solution enough or do you believe until we can make our own insulin again that everything else falls short? And, the million dollar question – does this effect which charities (and therefore what research) you are inclined to give to?

Serendipity is…

….your brother-in-law saying he’s cooking Italian and finding out he went this Italian route instead of pasta or pizza.

IMG_2052.JPG

Nope, no carbs here.

Would you rather: Diabetes Edition

Make a ChoiceYou know that game people play at parties called “Would you rather?” It usually involves two not-so-awesome choices and you have to pick the least-worst situation. For example, a question might be: “would you rather spend the day with someone you can’t stand or stand in line at the DMV for the same amount of time?” or something like that….

I realized over the weekend that us folks with diabetes play this game every day without meaning to….here’s just a smattering:

 

 

So…I’m thinking the diabetes version of this wouldn’t go over so well at your average cocktail party…but maybe all of us in the ‘betes blogosphere should get together and actually play this game together…because that would be hilarious! And just know that you’re winning this game every day by the sheer fact that you have to play it, even though you don’t want to :) What other “Would you rathers” have you had today already?