A Meme!

Feeling a little crap from an overnight basal test of basals that I artifically dropped super low, so instead of a real post, I give you: a meme!

What type of diabetes do you have: Type 1


When were you diagnosed: January 26, 1997 



What's your current blood sugar: CGM says 176, but probably a bit lower; the Dexcom has been running higher than reality over the last 24 hours, and my BG dropping fast from the heights to which it soared during my overnight basal test. 



What kind of meter do you use: Right now the Omnipod thing, because I'm participating in a study, but once I run out of free freestyle strips I'll be back to the OneTouch Ping.



How many times a day do you test your blood sugar: 8 ish? Less lately because I have a Dexcom in pretty much continuously. 

 Depends on the day.

What's a "high" number for you: I pretend to myself that "high" is over 180, but really it's over 200.


What's do you consider "low": Under 70. 



What's your favorite low blood sugar reaction treater: Tootsie rolls. 5 g carb per roll, hella cheap, available in bulk, resilient to being stored in unfortunate conditions (...in the bottom of my backpack) for long periods of time, and I hate them so I'm not liable to eat them when I'm not low. My ex hated them too, which was also useful. 



(someone should explain to me the appeal of glucose tabs: THEY ARE SO EXPENSIVE OMG.)

Describe your dream endo: Responsive to phone calls about pharmaceutical refills, accepting of the fact that I know more about my disease than she/he does, but not to the point that he/she offers no advice. Honestly, I have little faith in endos: I'd rather a good CDE any day of the week. 



What's your biggest diabetes achievement: 6.8, for 6 months at least.


What's your biggest diabetes-related fear: Kidneys, I think, followed by a heart attack, follow by limb loss or chronic pain. 



Who's on your support team: My absolutely phenomenal CDE, friends, officemates, sister, parents, boss (surprisingly), the grad student who is currently studying me for her masters...My Dexcom. Not kidding. And the people at various insurance/pharmaceutical companies/doctor's offices/pharmacies who work to get me the things I need, and paid for, in a reasonable amount of time.


Do you think there will be a cure in your lifetime: No. On the one hand, the advancement in treatment options over the ~15 years I've had it have been remarkable. On the other hand: no. 



What is a "cure" to you: Immunology to fix the immune system problem, and some sort of encouragement to get the beta cells going again, with minimal side effects.


The most annoying thing people say to you about your diabetes is: "Oh, my [uncle | relative | neighbor | 1st grade teacher] had that, and he didn't take care of himself at all…[enumerates the numerous unpleasant side effects said unfortunate relation experienced before dying tragically young.]" Thank you. That kind of comment is extremely supportive.

Runner up: "Can you eat/do that?" Wait, what? Oh, I have diabetes? Really?! Wow! THANK GOODNESS YOU TOLD ME BECAUSE I DIDN'T KNOW AND THIS CUPCAKE/STRENUOUS PHYSICAL ACTIVITY WOULD HAVE KILLED ME.



What is the most common misconception about diabetes: I think the biggest misconceptions apply to Type 2, not as much Type 1. When people figure out the difference between the two, they sometimes suggest some sort of moral virtue on my part, because the kind I have isn't associated with behavior, which drives me crazy; Type 2 is a big, undertreated problem, and the public perception of it can't possibly be helping.


If you could say one thing to your pancreas, what would it be: I feel bad for the pancreas. It gets a bad rap. It's not really it's fault that the immune system went ape and killed the beta cells. Besides, it's still useful, producing other hormones needed for metabolism. So I would tell it that I'm sorry for all the bad press it receives, and that it's doing a stellar job under the circumstances.

An illustration.

To follow up on my last post...

While on hormonal birth control (as in, for years, up until last Sunday) I averaged something like 45 units of insulin a day. There was a pretty wide spread there, but I very (very) rarely went below 35 (if sick and not eating, or if eating super duper low carb and also exercising like crazy), or above 55. I hate to make claims without the actual numbers in front of me, but that's roughly accurate, and close enough to make the point.

Today is the first day since I didn't start my new pack of pills last Sunday that I didn't get catastrophically, blindingly (literally) low. I probably ran a little higher than I'd like to, but nothing ridiculous.

I took 28.80 units of insulin. That includes a bolus (2.3 units) I took after midnight for food I ate at 9 pm last night, which shouldn't count. I did not eat low carb by any measure (cereal for breakfast, rice with dinner), though in the interest of full disclosure I had a pretty strenuous (but not entirely out of the ordinary) workout this morning.

I keep rechecking my pump to double check that number because it's so absurd.

And that fairly tidily sums up the current ridiculousness in my life.

Hormonal Birth Control + insulin resistance?

Question for the female blogging public: have you noticed hormonal birth control affecting your insulin needs? Like, in a dramatic way?

I was on the pill for roughly 10 years. I recently stopped taking it in lieu of other methods of BC (story for another post). I would have started my most recent pack on Sunday.

I have been low ever since.

Day 1: low all day. I figure, well, there are days like that.

Day 2: low all day. Well, there are two-day stretches like that.

We're on day 4, now, and it's more than a trend at this point. I'm looking at the 24-hour window on my Dexcom, and I count 8 times that I've been low enough to treat. EIGHT. That's once every three hours. It gets up above 100 from the tootsie rolls and crashes right back down.

It's bizarre. And the only difference in my life is the pill. I assumed that ending hormones would change my needs a bit, but I figured I'd give it all a month to settle down before redoing all my basal tests. I don't really have that luxury, now, though, because at this rate I'll die before a month is out.

Does anyone else have any experience with this? I'm failing in a google search and getting a lot of info on PCOS, which is not helping.

In which the Omnipod makes me cry.

As I mentioned, I'm currently trying out the Omnipod for a clinical study at the Diabetes Technology Center at UVA. Free strips (!), free sensors (!!), free pump supplies (!!!), and some money (hooray!) serve as reasonable incentive, and I was looking forward to the chance to try out the Omnipod. If I stick with the study, I even get to keep the PDM (the remote thing you need to program the pod).

Oh, Omnipod. I wish I could like you. I almost love you.

Except that I don't. It's kind of the worst of both worlds because now I know both how much I hate the tubing that comes with traditional pumps and also how much I can't use the Omnipod.

It's not just the IOB thing, although that remains ridiculous (yes, I really have been carrying around my Ping for a month to track IOB). No: I've lost 4 pods in just over a week, 3 to unexpectedly kinked canulas. The kinked canulas are bizarre because one of the things I nominally like about the pods is how easy insertion is. The pod inserts the canula for you, very quickly, and automatically retracts the needle. Given my struggles with the Ping sets, this is nice. But somehow, over the course of three-day wear, something keeps going awry, and I never know how or why until my blood sugar is over 400 for no reason at all. Thank heaven for the CGM, or it would be even worse.

(And when I say over 400, I mean it: both yesterday morning and this morning, I essentially took no insulin for breakfast, as far as I can tell. With the introduction of carb counting into my life, I've been able to eat breakfast cereal again, a vice I'd long since given up. I don't eat it every day, but I'm pleased as punch that I can plow through a bowl of frosted mini-wheats and go no higher than 130; wouldn't you eat it too? But when your pod decides to silently fail to bolus the 12 units of insulin I need for it, well...).

And then today. Today, up near 500, I changed out the inexplicably kinked pod for another. And 1 hour later, the PDM gives me some incomprehensible error, tells me to remove the pod, and call customer service.

I'm not a violent person, and I'm not a crier. I do get a little...excited, sometimes, but I don't throw, hit, punch, whatever. But I freely admit that I threw that thing very hard across my car when it did that.

The error signifies some sort of memory corruption problem, according to the guy on the phone. He had no useful understanding of why I lost the other three, nor anything particularly reassuring to say about the ~300 units of insulin I've lost in all this. There are ways to get insulin back out of the pod, but you always lose some, and you're not supposed to, but somehow today with 150 units in this brand-new pod I had to pull, I completely failed to extract more than 20 or so.

So here I am, busted-ass PDM, tons of lost insulin, sky-high. So I do the sensible thing. No, I do two sensible things:

First, I load up and insert the Ping.

Second, I burst into tears.

Like I said, I'm not a crier. And when I cry, it's very typically frustration, which it sort of was this morning. But it's a sad frustration: sad, because my A1C has been 6.8 for 6 months, for the first time in years, and a week of Way Too High will ruin it; sad, because freedom from tubes is amazing; sad, because 500 makes me more emotional than 50 does, somehow, and this is the second day running I feel crappy; sad, because of the fight I'm going to have to have with my insurance to get an extra bottle of insulin when I run out early this month.

I haven't reset the PDM yet, because I'm waiting to hear back from the study people about what they want me to do. I'm so happy for the Ping right now, I can't even tell you.

I wish the Omnipod were not produced and sold by a bunch of amateurs (seriously, you're not on the medical exemption list for devices on airplanes below 10,000 feet?!), because it's so close to being wonderful.

Instead, it manages to morbidly highlight exactly how much this disease sucks while just failing to make it better.

The OmniPod, or How Much Can We Mess up IOB?

I'm currently participating in a clinical study with the Diabetes Technology Center at UVA (I tried to find a link to them, but apparently they have no web presence. Wtf?). I've done a trial with them in the past, and I've found it very worthwhile: the pay is great, the free supplies are great, and none of the meeting locations are more than 2 miles from my apartment. Effectively, in practice, they pay me to be diabetic and test my blood sugar and take insulin, which I normally do every day for free, so it's a total win.

I just started week one of the current study, which involves wearing an OmniPod. One of the reasons I was enthusiastic about this study was the opportunity to try the OmniPod risk-free (and get a free PDM at the end!). I was a bit averse to switching paradigms (from tubed to tube-free) so hard without a test run, and the little plastic trial pod that doesn't actually inject insulin was not exactly fitting the bill.

First impression: I liked it. I love the insertion. I have no end of problems with the Ping sets (the same problems I had with the Paradigm angled sets, compounded by crappier insertion mechanisms). This is comfortable. It's big, but not ridiculously so. The size is less of a concern than I thought it would be.

Which is why it breaks my heart that their IOB calculation mechanism is so, so, so royally screwed up that I can never switch over, and am considering dropping out of the study because I'm afraid this thing is going to kill me.

For those who haven't followed the drama (which has been going on for years, and users are still screaming about it): the OmniPod doesn't include insulin taken to cover carbohydrate consumption in tracking insulin on board. It only includes insulin you take to correct a high (and maybe insulin you take for no specified reason? Unclear). The "logic" is that the insulin taken to cover carbohydrates are already used up by the carbohydrate and therefore shouldn't be included in the correction.

This is so confusing it's actually hard to argue with. It actually just makes no sense whatsoever. First, it assumes that both insulin and food hit your system at the same time and disappear at the same time. But they don't: this is part of the reason we'll never really get management as perfect as the undiabetic body, and also, more practically, why post-prandials are such a bitch. Injected insulin doesn't hit the system as quickly as native insulin, which begins to be released when your tongue signals that you're eating. This is why problematic post-prandials can't always be solved just by taking more insulin: I tried this, and I used to get wicked low, after going super high first.

This works best with an example. Let's say I eat a banana. The banana hits my blood stream super-quick. I bolus appropriately for the banana, let's say because I have a scale and I know it has exactly 24 grams of carbs (it's a small banana). If I test 1/2 an hour later, I *guarantee* that my blood sugar will be above 120, or whatever other example of a "perfect" blood sugar you want.

Let's pretend I'm having a good day, and it's 160. Let's pretend I tell this to my OmniPod PDM.

Now remember, I've taken insulin to contend with that banana. It's doing it's thing. Humalog works in my system for about 3-4 hours, so it is getting started. But the OmniPod will tell me to correct as though I have no food in my system and no insulin either. In the end, I will bolus 1-2 units extra for that banana.

And I will end up low.

It makes no sense to do it this way. If we could just ignore the insulin we took for food because it was used up for the food...why are we high? It's like there's some weird extraneous third force in the world besides food and insulin that makes your blood sugar go up. If it's high it's because the food is hitting the blood stream and there either is or is not enough insulin to deal, eventually. Ideally I guess we'd be able to track the degradation of glucose in the system along with the insulin ("carb on board", if you will). But we need to know how much insulin there is in the system to figure it out.

I have had enough problems with catastrophic lows in my life that I refuse to risk more for a system that dogmatically refuses to calculate this properly. This is one of the biggest benefits of pumping over shots, in my book (besides super-fine-tunable basal rates. I love basals!). I bitch and moan about bad software and crappy UI and all the rest, but the one thing -- the one thing -- that is really non-negotiable to me is IOB calculation.

At the moment, I have the Ping totally disconnected, pumping saline, bolusing every time I bolus with the OmniPod, to track IOB properly to make sure I don't kill myself with this thing. I'm going to see if I can stick with it.

This is really, really breaking my heart, because I really like the OmniPod, in so many ways. I've been up and down in and out of bed a few times over the last hour, and every time I get up, I reach for my pump site to disconnect, and every time I come back, I reach for the pump end to reconnect, and realize that I don't have to. It's really....liberating.

If only it weren't so fundamentally broken.

Mystified, in a good way

Dexcom will replace (free of charge) sensors that fail before day 5??

Color me both surprised and delighted.

Things You Don't Realize When You're 12 and They Tell You It's Forever

There are things you don't realize when you're 12 and your doctor tells you she thinks you have Type 1 diabetes, and then gets on the phone with your parents' insurance and tells them in no uncertain terms that you need to be transferred to a different hospital, a better hospital, with a pediatric ICU, instead of the regular ICU at the hospital with the ER that you've been sent to. So you're transferred.

And the doctors tell you that you do have Type 1 diabetes, and the next day the nurse says she is going to give you a shot of insulin, which you're going to have to learn to do yourself, and she promises it's not going to hurt, and she's right.

And your new doctor, the pediatric endocrinologist, smiles at you that day and tells you you're looking so much better, and while it's true that you're feeling a little better, when you drag the IV tower with you to the bathroom and look at your own ashen, unrecognizable face in the mirror above the sink, you think "This is me looking better?"

But the hot dog they bring you after that shot that actually didn't hurt is the most delicious meal of your life (that you'll remember as such for the rest of it), because you've actually been starving to death for a month.

Your new doctor also tells you not to worry, you can live with this, this problem that isn't going away, and you can still do just about anything you could have done without it, don't worry. You'll be fine.

And you, being 12, you think about how sick you felt when you went to the doctor, that you thought that you had cancer, and that comparatively diabetes sounds like a relief, because you think of Stacy from The Babysitter's Club, and how she didn't die, and how she was still the coolest babysitter, so it looks like you're not going to die either.

They tell you that it's for the rest of your life, and it's serious, but really, at 12, you just think, OK, they won't let me leave until I give myself a shot, well, pass over that needle, then, I can't sleep here anyway and the food is awful, might as well clear out ASAP, I have a ski trip to go on next week, and so much homework to catch up on...

And you do it. And you set a hospital record for the (short!) length of your stay, relative to the pH of your blood when you were checked in.

And you do go on that ski trip. Because your parents are amazing.

They tell you it's forever, but that you can do it. And you believe them, because you're 12, and you want to.

But there are so many things they don't tell you.

Some of those things are actually pretty good, like the awesomeness of living right near a 24 hour pharmacy. And how when you go to that pharmacy, always after 10:30 pm because it's just so much faster than going during the day because you're the only one there, that after a while the night staff will greet you by name, and they will know how to pronounce your last name properly even though your own freshman year roommates didn't know how for like 8 months.

But some things are not good, even though they're really just stupid, like the fact that brand-name prescriptions will be $30 while generic prescriptions are $10, which is supposed to encourage you to use generics whenever possible. But they also don't tell you that there's no such thing as generic insulin. Or Symlin. Or any host of other things. And even $10 a piece is a lot when you're 25 and a graduate student and you have Type 1 diabetes, no matter how good your student insurance happens to be.

And that's how I ended up sitting at the second of the 4 stoplights on the mile and a half between the pharmacy and my apartment, at 11:15 pm, mulling over the two $30 prescription copays I just gave over to CVS, and realized: I will have to do this every month for the rest of my life.

The thought of forever is somehow just so much more exhausting, when put that way.