Karmel was born in Southern California, diagnosed with Type 1 Diabetes at the age of nine, and educated at UC Berkeley. Karmel now lives in San Diego with her husband, where she is loving the sunshine, working in computational biology at the University of California, San Diego, and learning to use the active voice when talking about her diabetes. Read full bio

Is an Artificial Pancreas Good Enough?

Prescript: It’s been a while since I’ve written, I know. I had a beautiful baby boy who is now nearly six months old. Perfect and perfectly healthy, so take that, diabetes! This post is about other things, though.

Four years ago, I left my job as a software engineer to enter the world of biomedical research. My goal? Cure diabetes. I have since learned enough to fill an ocean, with the most important lesson being an ocean is only a drop in the bucket when it comes to the complexity of the human body.

Where are we in terms of a cure? We edge closer and closer to understanding the fundamentals, but it is a long, hard road. I believe we are getting close on a vaccine- that in the next ten years, we will be able to stave off the start of diabetes by at least ten years.

But over the last few months, something has become increasingly likely: the artificial pancreas will win the race. I have been thinking about this for about a year now, since I first heard initial results from the Bionic Pancreas project, led by Dr. Steve Russell and Dr. Ed Damiano. To make a long story short, using both insulin and glucagon, the Bionic Pancreas is able to achieve glucose values equivalent to A1cs of about 6.5% in early short-term trials.

Now, 6.5% is not good enough for me. But in those initial studies, people were eating whatever they wanted. So let’s imagine for a moment: in five years, let’s say there is a device that requires multiple injections per week, and requires wearing a pager-sized machine. That device is imperfect, but can achieve an A1c of less than 6.0% without excursions if I maintain the same diet I do now– which is to say, relatively low-carb, and well-watched. And the device does this without any input from me, without my having to think about it, without highs above 140 mg/dL, and without lows below 70 mg/dL.

That’s not a perfect system. But, hell, that’s good enough for me. I could happily go the rest of my life wearing a pager and never eating a donut or a slice of pizza if that meant I could avoid complications and not have to think about diabetes.

And, crucially, if that system existed, and I were on a funding committee at the NIH or any other research organization, and someone came to me and asked for money for a cure for diabetes– I would have to say, “You know what, there are needier diseases. Let’s put the money to those instead.”

Now, don’t misinterpret me– we aren’t there yet. The current systems are not good enough to avoid excursions, glucose monitoring is not reliable enough, and glucagon does not exist in a stable soluble format. But these are solvable problems that require iterations on current technology, not entirely new discoveries. With enough funding and attention, we will get there.

And when we do, our cry for a cure becomes much less convincing. A vaccine is still very important, and funding for a vaccine should be viewed separately from a cure, as it skips the need for machine-orchestrated treatment and complications due to delayed diagnosis. Similarly, funding for complications research should be viewed separately, as there are many of us already suffering from complications related to diabetes. But funding for a cure, assuming for a moment we have a mechanical solution? Better to spend that money on, say, celiac disease. Or Rheumatoid Arthritis.

Of course, the last thing I would want to see happen is to have the Artificial Pancreas become a foregone conclusion, resulting in the ebbing of funding for it as well as a biological cure. It ain’t over till the fat lady sings, especially in biology, so until we’re there, we shouldn’t give up on any potentially successful research.

All of this is to say: it’s exciting to recognize that we’re getting really close to my life being much easier. And the way we get there might not be how I originally expected to get there, but as long as we get there– count me in.

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Diabetes Blog Week – Day 4: What I Tell Myself

The question, for day 4 of Diabetes Blog Week: Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?

What I tell myself to get through the anxieties and failures of diabetes is the same thing I tell myself for anxieties and failures in the rest of life: And one day I’ll die, and none of this will have mattered. When standing at the pearly gates, no one will ask how many times my blood sugar was over 200 mg/dL. They might ask about the sins of temptation got me to that point, or about the patience and grace (!) with which I responded, but the numbers themselves? I can only imagine we’re the only ones counting.

And from another angle: the edges of biology are blurry. It matters that I am a diabetic, and that my blood sugar is not euglycemic. But this time? This instance of my being 264? A drop in the bucket. The idea is to reduce the overall load, but freaking out at this instance of hyperglycemia won’t save me much. Reacting quickly and efficiently is good, but, hey, I’ve been here before, and there’s no reason to panic.

Of course, that’s what I tell myself. What I do and feel is another story. Much like that part of me that gets a pit in my stomach if I’m late– even if the deadline I’m late for is self-imposed and completely invisible to the rest of the world– there is no helping it sometimes. So in the end, perhaps the most important thing I tell myself is, Breathe, work through it, and evaluate what happened on the other side. Que sera, sera.

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Diabetes Blog Week, Day 2: Poetry

What diabetes is

The problem is
What diabetes isn’t
Which is ever not
In and out dusk and dawn
It is and it is and it is
I left my nothingness
At home today sir
An iron lung on wheels
It is what it is
Blood and analytes
Now now and now again
Is it in on cue
If so now only
Each is is
A moment unto itself
Was and will be impossible
Dreams and guesses
Every is is a hypothesis
Every experiment
Ends with blindness
I did not choose this adventure
But so it is
Over and again
And so it is
What it is
And what will be as they say
Will be
Which will be
Maybe one day
That diabetes isn’t
And is instead
Tasteless odorless quiet
Like the hollow
In your clavicle
I kiss when you breathe.

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Diabetes and Pregnancy: And So We Enter the Third Trimester

A couple of months ago, I wrote about my awful night of hyperglycemia. At the time, I was unsure what the precise reason for a persistent high blood sugar was, with the most likely culprits being bad insulin and my ongoing pregnancy. After that night, I switched insulin bottles, and my daily insulin requirements dropped right down to where they had been a week prior. I concluded: the insulin was bad.

Over the couple of days, I have again seen a sharp spike in my insulin requirements. Pre-pregnancy, I would take 12 – 15 units of insulin on an average day. Requirements have been slowly climbing for the past two months, and in the last few days I have reached double that original level, requiring 24 to 30 units for a normal day.

This time, though, I don’t suspect the insulin. Tomorrow marks three months left in my pregnancy. In other words, third trimester insulin resistance is upon us.

Right now, it is 8:20 AM. First thing when I woke up, my blood glucose was 69 mg/dL with a slight downward trend, and I had not suspended my basal or anything. I have worked out for 45 minutes on the elliptical machine at the gym, and eaten a total of about 3 grams of carbs. I have taken a whopping 5.3 units of insulin over the past hour and a half, and am finally leveling out at 94 mg/dL.

Pre-pregnancy, I might take 0.6 units of insulin for a similar waking blood sugar plus (albeit slightly more intense) workout, plus about 20 grams of carbs. So the idea of pumping more than five units of insulin into myself before the day has even begun is a little bit shocking.

The other night, I went down to 34 mg/dL in the night because I had stacked and stacked boluses waiting to go down, thinking, insulin does nothing anymore! The trick of it seems to be that the insulin does less, but also takes longer to do it, which I am not used to. So total efficiency is greater than I perceive, just over a longer period of time. Delayed responses really complicate bolusing strategies; how do I know if I haven’t taken enough insulin, or if it’s just going to hit me in two hours?

And the third trimester has yet to officially begin. My strategy? Low carb. Or rather, lower carb — I have been anticipating needing to reduce my carb intake for a while, and so began in the second trimester, but only a little. But based on how much insulin it’s taking just to defeat my hormones, I’m thinking the third trimester is going to involve a lot of string cheese.

But, hey! I’ve made it this far, and thank God it has been easier than expected so far. The little tummy-dweller has stayed put, despite what seem like concerted efforts to kick a path out of me. So, one more trimester? We can do that. Onwards!

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Scott Malkinson has a Lisp and Diabetes

I have finally been catching up on some South Park episodes from the last few seasons. I enjoy the show, usually, despite its constant crudity and occasional inanity. The recent Black Friday/game system wars episodes were rather entertaining, and, lo and behold, it turns out South Park now has a diabetic kid!

Scott Malkinson has a lisp and diabetes, and is profoundly uncool. Scott Malkinson needs to eat every two hours (because he has diabetes), and complains in the recent episode that he is feeling tired because he is running out of insulin and needs to eat.

As a diabetic, I recognize that doesn’t make any sense. As a South Park fan, I don’t care. I propose a new saying: Better to laugh at it all and be thought a fool than to complain and prove it.

Sure, making fun of kids with a disease is cheap, the representation of diabetics as weak and high-maintenance is unflattering (says the woman who fainted recently), and the perceived relationship between insulin and food is inaccurate. On the other hand, one of the preceding episodes involved comparing African American anger over the George Zimmerman trial to the zombie invasion in World War Z. In other words, if we want highbrow humor, we better go read Aristophanes, and turn off South Park all together. Complaining about the diabetic character in South Park would be like complaining that women have their ankles showing in Playboy.

Plus, Scott Malkinson is sporting a totally sweet insulin-and-syringe bandolier in the Black Friday episodes. Now that just makes me want to be Scott Malkinson for Halloween next year…

 

South Park Diabetes

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In Praise of Diabetes Unawareness

November. My birthday is in November, as is Thanksgiving. And November is Diabetes Awareness Month.

Diabetes Awareness is important. It’s important that the public understand the looming threat of type 2 diabetes, and the constant burden of type 1 diabetes. It’s important because sympathy goes a long way in helping us all move forward, and because we need as many voices as possible to urge legislators to get their hats out of their rears and start funding the NIH again.

On the other hand.

On the other hand, I hope, if you are not a diabetic, or the parent of a diabetic, or a loved one of a diabetic– I hope you never have to be aware of diabetes like I am aware of diabetes. I hope you never have to think, every moment of every day, in a constant background track to life, “What is my blood sugar? Where is it headed?” I hope you are never brought to tears by your own inadequacy, unable to mimic even a single organ’s competency. I hope you never learn that shots are the easiest part of diabetes, that food is only one of a thousand variables to keep track of, that lows leave you sweating and exhausted and dumb as sand, that highs rot your veins from the inside. I hope you never have to cry every time you go to the opthamologist, just because you know one of these days she’s going to tell you she sees red rivers invading your retinas. Ferment the cider till the raisins are bloated, I read; don’t let my body ferment, don’t let me grow bloated like a raisin from the sugar in my veins, I think.

I am never not aware of diabetes. Not during work, not during spring or Thanksgiving, not during sleep, not during orgasm. It is always there, and I am always running the numbers, regretting decisions, calculating my next move, counting the number of mistakes I can make before the complications catch up with me.

May you never, ever be as aware of diabetes as I am.

Even more than that– nothing against you, but you’re not the one I have to protect– even more than that, I hope– God, please, I beg– please let this baby inside of me never have to be aware of diabetes. Please, let him be born at a normal size, his shoulders unencumbered by my blood sugar levels. No congenital malformations because of mistakes I made too early. Please. And let him grow up, and let him never, ever have to know like I know. Let him never even have to know like my husband knows. Please, God, let it be one of those weird things his parents worry about that seems silly and antiquated. Please don’t ever let his body turn against him, please keep him ignorant of this cellular genocide. Please, may he never drink too much water, or eat without end and without consequence, his body unable to process any of the sugar. Please, God, each and every receptor, each and every antibody– make them perfectly formed in his body. Let him reach his quarter-life and complain that he has nothing to write a dark novel about. Let no one hesitate to say, “Hey, at least you’ve got your health.” Let him eat candy with abandon at every damn Halloween and birthday party and holiday.

Please, God, let him never be aware of diabetes like I am aware of diabetes. May he be blindly, naively, even offensively unaware of diabetes.

Please, God. Please.

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How I Met President Obama (and fainted): The True Story

One week ago today I stood behind President Obama and fainted as he addressed the nation on the Affordable Care Act.  This is  a very long account, in excruciating detail, of how I came to meet the President. No one person will likely make it through all of this, I fear, so I added section headings for your convenience. Feel free to skip to the parts you care about!

 

Karmel Allison with President Obama

The Invitation

On Friday morning, my plan was to extract spleens from three mice, isolate dendritic and T cells, stain, and co-culture the cells. I would collect on Monday and analyze using the flow cytometer. In the meantime, over the weekend, I would sit down and force myself to write out responses to the reviews I had just received back on a paper I submitted– a task I was by no means looking forward to.

The best laid plans of mice and men often go awry, indeed.

On Friday around noon, I happened to check my email while my cells were spinning in the centrifuge. I had received an email the prior week from a representative of the American Diabetes Association (ADA), expressing her appreciation for the blog post I had recently written about the Affordable Care Act; I had thanked her for her kind words, and now saw a response. Rather than a generic, “Sure thing!” what I saw was an invitation– my blog post had been passed by a director at the ADA to a contact at the White House, who wanted to invite me to an event at the White House on Monday!

“The White House!” I thought. “How cool would that be!” But I kept reading, and there was more — the President would be speaking about the Affordable Care Act, I would be standing with the President, and I might even get to meet him!

And then my brain hits pause. “This Monday? I have cells to collect! I need to be here Monday.”

“Self, the cells will wait. When someone invites you to come meet the President, you don’t say no.”

The day was frantic to begin with, as I was rushing to get my cells cultured before a meeting at 1:30. Now, I was also running back and forth to my computer, and checking my phone at every opportunity. Emails were traded; the ADA would pay for my travel. By the way, I’m pregnant, but only 20 weeks, so traveling should be fine. Can my husband come? He’s a crucial part of my diabetes care team! We can get him in to the audience at the event, but can’t pay for his travel. How long do you want to stay? If I fly back Monday evening, I can still collect my cells on Tuesday. Less than 24 hours in Washington DC seems like a shame, but such is the pain of short notice. The hotel is booked! The flight is booked! Now to find a dress for my pregnant self in less than 24 hours!

Arriving in DC

We awoke at 4:30 AM on Sunday morning to pack and head to the airport. Even with my printed boarding pass, I had a slight, half-joking worry that I would arrive at the airport and be told the ticket was no good; this was an extremely elaborate phishing scam, and now someone claiming to be the ADA had my Social Security number. But everything went smoothly, and I even found that TSA agents are friendlier if you’re visibly pregnant. Bonus. My husband and I joke about trying to cut in the security line– “Excuse us! We’re on the way to meet the President!” and about the relative likelihood that this would actually happen — “Sorry, but there was an incident in Syria. The speech has been canceled.” While waiting for the plane, we read all the comments and emails from friends and family who are excited for us– meeting the President! My brother had joked that it might be the coolest thing any one of us siblings had done to date; I corrected him– it is perhaps the closest-to-celebrity thing, but, hey, our older brother is a pilot in the Air Force. That’s hard to beat.

I remarked to my husband that I felt sort of silly; all this attention for being very lucky. I didn’t labor for months and years over that blog post– I wrote down what I was feeling at that moment. It just so happened that it struck a chord with a lot of people, it seemed, and was in the right place at the right time. And it just so happened that there was a speech that needed a backdrop, and that I was selected for that. No great accomplishment on my part. I felt lucky, not proud– and in fact, all told, would probably be much happier if I could just get that darn paper I was submitting accepted in some journal!

(Now, in a moralistic view of the universe, this might be seen as the cause of the ensuing events. I say to God, “This is awesome! Thanks! But it’s strange of you to land this good fortune on me!” And He responds, “What– you feel you need to work for it? Fine, I’ll make you do some work for it.”)

We land in Baltimore at around 6 PM, Eastern Time. We are picked up by one of the representatives from the ADA, and are thrilled to find she is fun and funny. The drive into DC takes a while, but is still very exciting for me; this was my first time in DC, and really my first time on the East Coast north of Florida. So much greenery, and leaves beginning to change color! Two deer, one of which was dead. And as we approach the city, we begin to pick out the famous landmarks and sites. The Washington Monument is draped in scaffolding, like chain mail.

We drop our things off at the hotel, about 15 minutes outside of the city, and then head into the city to catch a few sights before the night is done. Given the tight schedule of the trip, we know we won’t be able to see much, but I figure it will be a while before I’m back in DC, and I should at least see a few things! We get dinner at a Lincoln-themed restaurant with a floor assembled from over 800,000 pennies, and then head to the Lincoln Memorial. Truly beautiful– glowing marble, and the Gettysburg Address carved into the walls. My husband and I discuss the relative paucity of overt Biblical references in Presidential speeches nowadays as compared to how prevalent they are in the Address. We turn around, and there is the Washington Monument, and the famous pool that I associate with many protests throughout American history. After a little while, I’m cold– though I’m told this is the finest weather DC has ever had at this time — and I’m tired after a day of flying. We head back to the hotel and try to sleep despite the time change and undercurrent of excitement about the coming day.

The White House

The drive into DC in the morning is a trip back in time as I try to recall facts I learned in high school. The Jefferson Memorial! He was big on the rotundas. All roads lead in to the Capitol, designed to be like Rome by some guy whose name I’ve forgotten (Benjamin something?). Ionic columns everywhere, not so stoic as Dorian or so exuberant as Corinthian. My, the Pentagon casts quite a shadow. Per capita, there are way more suits in DC than in San Diego. And way fewer flip flops. Streets are closed, with police protecting some important dignitary at a famous hotel. The city is pretty; not so oppressive as Chicago. Apparently, no building can be taller than the Washington Monument, and no building can obscure a view of the Monument. So many old buildings! So much marble! In Southern California, if it was built before 1950, it’s considered ancient.

We park as close as we can to the White House, and our friend with the ADA explains that I will have to go into one entrance, and she and my husband will go to another. We circle around the White House for a little, trying to find the entrance. The White House! We stop for a photo in front, and wait for a gaggle of teens in school uniforms to clear out. One girl stops beside my husband and me as we wait for the kids to clear out, gives a grin full of braces and says, “Selfie!” as she snaps a photo with her arm around us. I giggle; teenagers! Such a strange species.

All this time, the velcro holster I strapped around my thigh that morning to hold my insulin pump is sliding down my leg as I walk. Not good. I’m holding it on as we walk, trying to stop and adjust, but it’s not sticking in place. This I will need to fix before getting on stage, lest I embarrass myself with a pump sidling down my leg!

We find the entrance for me, and part ways. I enter through a guardroom; they verify my name and identity, and send me through a metal detector. They hand me a visitor badge, and tell me I’m good to go. I stand at the door for a minute. “Do you know where you’re going?”

“Not a clue.”

“Just walk across, over to that building with the big columns. See it?” “Got it! Thanks!” And all of the sudden I’m walking across the White House grounds, feeling like I’m breaking some rule. Should they just be letting me wander around? It’s strangely quiet and peaceful. Someone comes out of the doors of the columned building; “Karmel? Am I saying that right?” and I’m whisked into the White House. People are gathered, and a few introductions are made. I find a restroom as quickly as possible. I tighten and readjust my makeshift pump garter. A little uncomfortably tight, but it will hold, and it’s hidden. Phew.

Back in the gathering room, there are about twenty people, and I can’t tell who anyone is. Are these all White House staffers? Should I recognize anyone? Who else will be standing on stage, and why were they invited? Should I try to mingle? All these people seem to know what they are doing; am I the only one suffering from impostor syndrome here? Oh man, what’s going to happen if I get low? How am I supposed to do this with no continuous glucose monitor (CGM), which I will not be able to hide in my dress? What if I get low? Low I can probably tough it through. What if I get high? Do I just keep standing there on stage? It will only be half an hour, probably, at most; that won’t hurt my baby, right? Is it obvious that I’m pregnant to strangers? Does this dress look okay?

Luckily, I am quickly saved from my self-doubt as we are directed into a meeting room with a large table and large leather chairs. Ten or so of us are invited to sit; we are the invited guests, to be standing behind the President. We will wait here for a bit, practice going out on the stage so that we know what to expect. The President will come out of the Oval Office before the speech, and come around to meet us all. Then we go on. It will be a longer speech than usual– really long, 20 or 25 minutes. Does anyone feel uncomfortable about that? Make sure not to lock your knees! We don’t want anyone becoming ill, so if you have any concerns, please let us know.

I of course at this point think, 20 or 25 minutes? That’s not that long at all! Who wouldn’t be able to stand there for 20 or 25 minutes? God laughs.

We are in the Roosevelt Room; the Oval Office is next door. Teddy Roosevelt was the first American to win a Nobel Prize, and there it is.

While we wait, we gathered ten chat; where are you from? Why were you selected? When were you told? Most people are from the DC area, with a few from other states. Most are small businesspeople who have taken advantage of the Affordable Care Act already. A few students, and a pharmacist representing CVS. We were all told Friday– is it normal to get so little notice? Apparently. Janice was told yesterday she would be introducing the President, and had prepared a few words. Did you sleep at all? Brave. Nervous. Her speech would be printed and on the podium. Janice runs a dog kennel in Delaware. The group chats about dogs and Congress and the wide-ranging effects of the shutdown. We chat about how weird it is not to have cell phones to turn to (they were all placed in little cubbies before entering the Roosevelt Room). I laugh about the fact that all the staffers are using Blackberries– Blackberries! I haven’t seen one of those in California for years! A dozen people standing there, tapping away on their Blackberries, and we have no cell phones to distract ourselves with; we’ve been transported back in time, we joke.

Throughout all of this, I am keeping a close eye on my blood sugar. I start to head down, and eat a low-carb snack bar. I lament that I don’t have a perfect idea of how this will all be timed, and that my body thinks it’s three hours earlier; I can’t rely on my normal tendencies and trends to predict where I’m going to head. I take 8 grams of corrective carbs as well, just in case.

Time to practice. We are directed outside the room, down a hallway, to the Rose Garden nearby. You can leave your purses; this is the White House. The teleprompters are scrolling the Gettysburg Address, which I presume is the teleprompter version of Lorem Ipsum. They will be safe. Out on the steps in the Rose Garden, we self-arrange by approximate height, shorter people in front. This results in all women in the front row, and all men in the back. The staffers rearrange us a bit, attempting to achieve some balance of color and height. I am placed directly behind the podium on stage right. I lament internally that I will be right behind the rather tall President– no one will see me! And I chide myself — have you grown so vain that it’s not enough to be on stage behind the President? You must be in clear view of the camera to be happy? Here again, God laughs.

Remember where you’re standing, and remember to part when the President and Janice walk through!

Back inside; my blood sugar has turned and is heading up. 85 mg/dL. Good. Unless it’s heading up too quickly? A few more minutes and I’m in the low nineties. I bolus a little bit of insulin for the food I had eaten earlier.

Now we’re almost there! Let’s have you all stand around the table, in the order you’ll be heading out there. Valerie Jarrett enters the room, and goes around the circle, introducing herself. I recognize the name. Kathleen Sebelius follows, in a lavender blazer. She asks where each of us from, shaking hands all along the way. She doesn’t introduce herself, though, and several of us whisper around– who is she? “Obviously important enough to not require an introduction!” I remark. Someone has seen her speak before; it’s Kathleen Sebelius, she says. Ah! The name I know; I’ve just never seen her before.

And then! The President! Coming through the door that connects the Oval Office and the Roosevelt Room. As he enters the room, it feels surreal for a moment, as my brain says, But wait– shouldn’t there be a TV screen separating us? I note that he looks remarkably similar to how he looks on television; there is no shock of, “Gee, he looks so much more [fill in the blank] in person.” He makes his way around the room, shaking hands and collecting names. He calls me Carmela. Close enough! I rack my brain for something clever to say that will make me memorable to him; nothing. I let the moment go, recording on my mental chalkboard– I met the President! Shook his hand! What fortune and fame!

The Faint

President Obama Catches Karmel Allison

 

And it’s time! Last blood glucose check — 97 mg/dL. I take a half unit of insulin, not wanting to go up during the speech. We walk out, in order. I find my place, hoping I won’t be too hidden. Is my dress okay? Is my bra showing? Don’t lock your knees!

We part the waters as the President and Janice come down. Janice approaches the podium and reads her speech. It is printed in Comic Sans. Weird. She does well; I am impressed. I ponder whether I could give a speech in front of the nation on such short notice. The President begins. There are two hundred people sitting out on plastic folding chairs, and rows of cameras behind. Nice cameras. Giant cameras. One cameraman is sitting on top of a twelve foot ladder. Yikes. I scan the audience, looking for my husband and my friends at the ADA. I don’t see the ADA representatives, but soon enough I find my husband, smiling, iPhone held up. I grin; conveniently, he is right below the President’s ear in my view. That will work well.

I listen to the speech, making sure to smile. I always notice in speeches when the backdrop people start to look bored, and I giggle. I will smile, even if it seems weird! I think. I watch the teleprompter, and the back of the President’s head, and my husband. I think that tall dude in the front is the Secretary of Education? What’s his name? A lot of the offhand remarks during the speech are not on the teleprompter; whoever is manning the teleprompter pauses the text while the President remarks that people are getting healthcare for less than a cell phone bill, and joking about old people like himself. I consider the politics of it all. What do I feel about the botching of the website rollout? I’m surprised anyone is surprised; can you name a single government website that works well? The only one I can think of is Obama’s campaign website– which was built before he became encumbered by the Great American Bureaucracy. This isn’t about Obama or Sebelius or the Democrats or Republicans; this is a problem endemic to large, unwieldy institutions. There’s something comforting in that, though; streamlined websites require a little bit of autocracy to build with such efficiency. If the government were too good at building effective technology, it could quickly graduate to totalitarianism. With all the recent concern about the NSA, I much prefer the government to be a little bit technologically inept.

The speech is good, I think; he makes the crucial point, which is that all this fighting over the Affordable Care Act was not about a website. I consider the digital divide, and hope that there are already alternate means of signing up for healthcare. Indeed there are; the President lists them off, including a phone number. I worry for a minute that he won’t actually give out the phone number, and instead will just say, It’s on the website. But he gives it out. And repeats it. I am relieved. Ironically, he is mocked for the infomercial-like quality of this later, but I think it would be unfair to the many people who are not always online to not give it out in a very public forum.

And as the President continues, I see the sun begin to come out. I am pleased; it’s kind of chilly for my San Diego self. The sun spreads slowly over us, from stage left to right. It finally reaches me, and I enjoy the warmth for a moment. Then it hits me. Suddenly, stars. Shit, I think, that’s not good. No stars! Go away! This has happened before; even before pregnancy, I have always had low blood pressure. My dad does too; it’s one of those things that can be mildly annoying, but I figure I will benefit in the end when everyone else is worrying about hypertension. It is not unusual for me to get dizzy if I stand up too quickly in the cold, and if my blood pressure is taken at the doctor’s office, the machine occasionally gives up the first time around. “80 over 40,” the nurse often says, “That must be wrong. Is that normal for you?” I have fainted maybe a handful of times in my life, including last Christmas, as I stood up to hug my husband and he lifted me into the air.

Stars. Not good. Focus. Breathe deeply. They will pass. The President has already said “In conclusion.” I’m almost there. Hold on.

The stars multiply. Uhoh. Not good. Hold on. Two “In conclusions”? What? Please, finish soon! Please, God, don’t let me faint! I’m so close! Lighter and lighter headed. I reach out to the woman standing next to me and grab her hand, hoping to stabilize myself. She seems to realize that something is wrong. Hold on, self!

I must not have held on. The next thing I knew, I was looking at the President, but his face, not the back of his head. “You’re going to be okay.” Uhoh. What just happened? Someone from behind pulled me off stage, walked me quickly back to hallway at the entrance of the Rose Garden. Sitting. Water, cold water. Orange Crush, in case you’re low. Am I low? I shouldn’t be low; I was going up. Can I get my purse? Next to a white jacket. Yes, I’m feeling better now that I’m sitting. I am so sorry. My husband is out there — can someone get him?

Karmel in WhiteHouse ClinicA medic, and the White House doctor is coming. Lots of water. My purse, the brown one. Measure my blood glucose. 140 mg/dL. Not hypoglycemic. That at least is a relief. Dear God, did I just faint on stage? I will go get her husband. No, he’s here already– he found his way back. Boy am I happy to see him. Are you okay? Are you low? I’m okay; lightheaded. 140 — not low! Was it bad? I ask. Was it visible? Did anyone see? The President stopped his speech to help you. I’m pretty sure it was visible. Oh man. Oh no. Wow, I am so embarrassed. Wow. Did that really just happen? I am so sorry. Had you eaten? Was it low blood sugar? No no, I had eaten, I wasn’t low.

The President! I wish I could remember better what exactly he said, but this part is all a haze. Are you okay? Yes, just got a little light headed, I think. My husband introduces himself; later he will explain the sense that he should be focused on meeting the President, but all he can think is, Is my wife okay? My heart melts.

Once I am okay enough to stand, we are taken back to the White House clinic by the White House doctor. A small room, with marble floors and minimal medical equipment. They take my blood pressure and pulse; ninety-some over sixty-some, and fifty-some, rising to 66 BPM. All normal for me; the pulse a little fast, but that’s probably because now I’m shocked at what just happened. I still don’t have my phone, but David is already fielding calls; my mom has been texting, and she knows I’m okay. An unknown number — Jessica, my editor here, calls. Another unknown number– CNN wants to talk to you. What? Are you joking? Wow, this just got weirder. Wow, I can’t believe I just fainted on national television. I am so embarrassed.

The White House physician gets serious: it sounds like this was just a question of maybe dehydration, and the sun, and lightheadedness. But it’s his job to consider the worst case scenario. And it could be some sort of internal bleeding, or something wrong with the baby. (Oh please, God, that’s impossibly unlikely, right? Please? Anything but that!) Watch closely how you feel; if you feel any cramping or pain or abdominal discomfort at all, I advise you don’t fly, and go to a hospital immediately.

Yikes. But I feel no pain, and feel much better now that I am hydrated and have sat for a while. I think we’re okay, but will definitely keep an eye on it.

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Media Queen for a Day

Did you guys drive here? No, we came with friends from the ADA. They are in contact with my husband, and are waiting outside the gates for us. I get my phone back. Texts and phone calls already piling up. Uhoh. Emails. Tons of emails.

We get lunch with our friends from the ADA, and I have reached the point of laughing about it all. Wow, he stopped his speech? How far was I from the end? Oh wow. You think everyone saw? That was unexpected. Wow. How did you even get backstage to see me so quickly? As lunch continued, we all excused ourselves for checking our phones so often– the calls and texts and emails were rolling in. Several people from CNN. Who was talking to whom? Local San Diego papers. Diabetics emailing. Friends and family — are you okay? Several people noting they saw me standing right behind the President, and I laughed realizing they hadn’t watched to the end of the speech where I fainted on national television. Overwhelmed, and my blood sugar showed it– the adrenaline pushing me up despite tons of insulin flowing in.

And then the question that the day had turned to: do I respond? Am I willing to talk to these people? Despite writing a blog, I am a rather shy person. Do I really want to expose myself like that? It is a good opportunity to talk about why I was at the White House in the first place: the Affordable Care Act, diabetes, and pre-existing conditions; but I’m a scientist, not a public speaker. Then again, you only get your fifteen minutes once. And, my husband is here with me, and damn he looks good in a suit. Besides, no matter what I said, everyone would forget about me by Tuesday, and this would only come up once a year at Thanksgiving when my family teases me about the time I fainted in front of the President. Unless I manage to do or say something even more embarrassing. But, hey, at the end of the day — YOLO. Let’s do this, I concluded.

We needed a battle plan, and I needed to take off my shoes. I only had the one dress, so a change of clothes wasn’t really an option. The representative at the ADA found us a meeting room at a nearby law office to use, and we began to triage emails and calls. First order of business was ensuring worried family and friends I was doing just fine. Next was figuring out who I should be talking to. Before I knew it, I was agreeing to phone and Skype interviews. My husband was keeping track of who I spoke to, and who I promised to speak to — but I was pretty quickly overwhelmed, and just let the tide of excitement carry me.

The biggest thing to remember, I was told, is that they’re going to try to ask you about what it’s like to be caught by the President and so on; don’t worry about what they ask you — just answer the question you wished they had asked you. Sounds like holiday dinners at my parents’ house; I’m pretty sure I can handle that.

Still, each time I spoke to someone, I was nervous– how did I get here? What am I doing? Am I crazy? What if I manage to embarrass myself further, or embarrass the ADA? I just kept telling myself no one would remember by tomorrow morning, and no one would listen to these interviews except my mother, so I was okay.

Emails from strangers flooded in. Most were concerned and sympathetic; some were accusatory. Very quickly, I was a gif, stuck forever in a loop of being caught. I still hadn’t seen the video, or the end of the President’s speech, or any of the pictures of me behind him, and I didn’t want to– I could hold my own as long as I didn’t think too hard about myself on stage.

A fortunate coincidence — at the start of this trip, I happened to be about 90% of the way through Dave Eggers’s new book, The Circle. It’s great — I highly recommend it — and it just so happens to include a number of scenes in which lives are unwittingly thrown open to a public forum. It could be worse! I thought, and I don’t have to feel bad about all the comments flowing past me that I can’t respond to; that’s just the way of the world now.

My first phone interview went well. My husband, ever by my side, assured me I sounded coherent and confident, despite how I felt. I managed to stick my story in there– why I cared about the Affordable Care Act, the fact that I was a diabetic– and didn’t lose all my words, as tends to happen when I get too nervous. Everyone was friendly, congratulatory, sympathetic, curious. One after the other, and next thing I knew CNN was asking if I would go on Piers Morgan that night. They would pay to have the flights moved to the next morning.

Television? That’s a whole different ballgame. No one will see it, right? Except my mother? I’ve never seen the show; there can’t be that many viewers. You only live once…

At some point, in my red dress and teal tennis shoes, I left the war room to go to the restroom. The law office we were in had quite a bit of security, and during the afternoon, the receptionist had switched out. As I was returning to the room, the new receptionist stopped me — “Excuse me,” he said. “Yes?” I replied, expecting to have to explain whom I was with, and what I was doing. “Are you the woman who was standing next to the President? And fainted?”

I laughed. “Yeah… that was me.”

“Oh wow, I thought so. Are you okay?”

“Yeah, doing fine now– just a little embarrassed and overwhelmed by all the sudden attention!” Well, I thought I would be getting a brief tour of the Library of Congress right about now. The best laid plans of mice and men, and how!

I soon decided I couldn’t respond to everyone, or all the requests. I chose somewhat haphazardly, I admit. The hundreds of unread Twitter and Facebook messages I just marked as read, and decided they would have to be ignored. Emails that went to the inbox normally reserved for promotional and social network messages were also ignored. My apologies if you were in there!

I was on for Piers Morgan at 9:00. I worried a little about whether I would be able to stay awake and coherent to that point. Around 5, we decided to head back to the hotel so that I could shower and clean up. I would have to wear the same dress on the show, but at least I would have a few minutes to rest.

Again, the unexpected– an hour later, we were still stuck in DC. Apparently, rush hour traffic in DC is no joke. We gave up, recognizing we weren’t going to make it back to the hotel. We stopped and got dinner instead. During dinner, I called to make an appointment with my perinatologist back at home, just to make sure everything was okay with the little guy inside. After dinner, we walked over to the CNN studio nearby. “So what’s Piers Morgan like?” I asked our ADA friend. “Is he the kind of anchor who will be mean to me?” I was assured he was more mild than that.

Karmel in CNN Studio

Once in the studio, I was moved into makeup with relatively little explanation about how this was all going to happen. The makeup artist carried on with some disinterested patter while applying more makeup than I had ever worn in my life, cumulatively. Have I ever even worn mascara before? I wondered. Maybe when I was a kid, at some girly sleepover.

“So why are you on the show tonight?”

“I fainted while standing behind the President!”

“Oh. What do you do?”

“I’m getting my PhD in Bioinformatics.”

“Oh. That’s great.” Pause. More lipstick. “So you’re here because you work for the government?”

“Uh, no.”

“Okay, you’re done.”

My escort had disappeared so I wandered outside the makeup room for a moment before hearing my husband. I found the waiting room, and tried to drink some tea and not get tired while not ruining my mask of makeup. I was pointed in the general direction of the bathroom, and wandered through the back halls of the CNN studio, empty so late at night, with large televisions permanently cycling the current stream. The cleanup crew was laughing and running in the halls.

Back in the waiting room, I watched the live feed of Piers Morgan, presumably in New York, as it neared my time. He’s British, apparently. We joked about the fact that all I needed to do was not faint again on national television. I tried not to think about me on that screen. My blood sugar held steady, even after the walk over, and I was thankful.

“This is the first time you’ve been on TV?” someone from CNN asked.

“Yup,” I said.

“Perfect,” she replied. Is that better? Am I more likely to botch this and make for good entertainment?

I was moved into an adjacent room, small and painted black. The key is to stare straight at the camera, and not to shift in your chair, I had been told. One chair, one big camera. Giant lights behind the camera. The chair swiveled too readily; that makes it harder not to shift, I thought! The CNN staffer set me up with an earpiece, and tried to wire the microphone through the sleeve of my dress. She fumbled around with it a bit. Her cell phone rang; the microphone just has to go around the back, the voice said, not through her sleeve. “Oh– they’re watching us?” I asked, though as soon as I said it I realized of course they are. Once I was wired up, I waited. The screen below the camera played the show. “That will be turned off when I’m talking, right?” I didn’t want to be looking down at Piers Morgan’s face instead of the camera, and I certainly didn’t want to see myself talking. It would be turned off as soon as I was on.

The staffer left the room, and I was in the dark, waiting. I could hear the show through the earpiece. Children dead in a Sparks school shooting. We know people from Sparks. Tragic — I have to follow this? Then a White House representative talking about the Healthcare.gov website, and where the blame lies. A voice told me it would be just after the commercial break. Silence during the commercial break. And then back on, with the intro video showing the clip of me fainting. That was the first time I had seen it, and I laughed out loud, alone in my fishbowl room. Wow, that’s embarrassing. Then I forced it out of mind– it didn’t happen, and no one saw it. And no one is watching this; it’s just a phone call with some guy. No big deal.

And I was on. I stared at the camera, tried to smile. Bright lights. I don’t remember what he asked, and I can’t bring myself to watch the segment yet. I just recall him asking something, and me launching into why I was on stage in the first place. Close enough, I figured. He kept asking about the fainting, so I kept trying to answer about healthcare. And then as soon as it started, it was over. A single instant in time.

I wasn’t told I was done, but after the show continued on for a few seconds, I figured it was safe to assume I was not on the air. I was detached from my cabling, and I exited back into the waiting room. “So how was it?”

My husband and the representatives form the ADA assured me it was great. I didn’t know whether to believe them, but I admit it was exhilarating to have survived. I get to be done now, right?

“They asked if you wanted to do the morning show tomorrow.” One more time: YOLO.

Sure, why not. I’ve already gotten this far, right? But I’ll need something to wear– all I have is this dress and the t-shirt I brought for the plane ride.

On the way back to the hotel, we stop at a CVS to pick up makeup remover. It takes me half of a package of face-wipes to get all that makeup off my face.

The emails and phone calls keep rolling in. My husband triages for me; I fall asleep.

The next morning, a car from CNN picks us up at 8:00 for an 8:45 AM arrival at the station. By 8:35, the driver is getting frantic calls; they’re supposed to be here already! We say we were told 8:45, and I assumed that like the previous night that was an hour before air time. When we arrived at 8:45 at the station, however, the CNN staffer was literally running, telling me I was on in two minutes, and there was no time. I grabbed one of the shirts the ADA representative had brought for me to try, and put it on in the bathroom. I tried to calm myself. If they botched the start time, that’s okay; this must happen all the time. Don’t get nervous, and don’t panic. Just play it cool. No one watches morning shows anyways.

I was rushed into the studio room, and miked and makeupped simultaneously. No time, no time! And you’re on! I have not seen this segment either, and have never watched the show, so I’m still not sure whom I was talking to. Not knowing makes it easier to respond as if it doesn’t matter. They played some clips about people fainting in other speeches by the President, asked some fluffy questions. Done in twenty seconds, and I was led out of the studio, to the car to the airport.

Home

A relief. On the way to the car, a woman stops me– are you the woman who fainted? At the airport, strangers strike up conversations– are you the one who fainted? Emails and calls still. Facebook friend requests from strangers. I’m exhausted. We make the mistake of watching Prometheus on the plane. Not the film to show to a pregnant woman who is concerned about the health of her baby at that point in time. My husband ensures that I don’t watch the parts that involve gestated aliens and robot cesareans.

Back in San Diego, and no one cares who I am. Happy is the city that doesn’t watch as much news as in DC! I love you, San Diego. Back home, still culling emails and phone calls. Avoiding phone calls now; I’m done. Yesterday’s news.

The next morning I somehow ended up in tears before leaving for work. The little guy hadn’t moved much in the anatomy ultrasound a few weeks prior, or in the ultrasound I had the previous week, and I still couldn’t really feel him kicking. Maybe I could, but it seemed like just my stomach. What if something is wrong? What if fainting hurt him? I was tired, and overwhelmed by the last few days, and horrible images of the little guy floating around, limp inside of me drove me over to tears. My husband comforted me, and assured me everything was fine. He understood my worry, but I was being ridiculous. I knew it too.

Back to work. People from neighboring labs greeted me with, “I saw you on TV!” and a few comments about how much my blog post had meant to them. That moved me. In my lab, I explained the story a few times, and we all laughed, and then got back to work. Oh, academia, where the minutia of obscure cellular functions is infinitely more interesting than the President! How at home I felt.

My 72 hour CFSE stain had turned into a 108 hour stain, and I hoped all would still be well. I spent the morning too busy to worry, analyzing the cells. And, hey, it worked! Not perfect, but well enough, certainly!

After noon, I left for my doctor’s appointment. The perinatologist asked for all the details of my fainting, and agreed the most likely cause was just lack of blood flow. She hadn’t heard about the fainting, and was surprised to hear this fainting took place at the White House, behind the President. An ultrasound to check on the little guy. I held my breath. But there he was, happy as a clam. Spinning and galumphing. I explained I had been worried, because I still couldn’t really feel him. The nurse expressed disbelief; surely I could feel that movement! I tried to feel and watch simultaneously, and then it clicked. The visual confirmation plus the feeling, and I realized, oh, yeah, I have been feeling that! And I can definitely feel that! An amazing moment. A tiny secret, held inside of me.

And then from there on out, I could feel him all the time — rolling and bucking and galumphing about. Amazing. Even now, I am sitting here, pausing to feel. Incredible. I am thrilled to be back to real life, and that this is the wonderful realness that life is.

The Aftermath

Now, for the most part, the emails and comments and messages I received were supportive and positive — from diabetics expressing camaraderie, despite their feelings on the healthcare act, and from friends expressing how much my writing meant to them. A few comments saying my hair was cool — I’ll take that! Still, even early on, there were people suggesting I faked the faint, that I was an Obama plant, and so on.

A number of friends and family have expressed great concern and surprise at the negativity, and have arisen in my defense. I appreciate that. But, for my part– I find the “faint gate” conspiracy theories hilarious. Absolutely entertaining. There is certainly no shortage of crazy on the internet, and where would we be without it? Can you imagine the internet without all these people? A boring place indeed!

Not to mention, there must be some metric of press freedom we can derive from all the Obama-bashing on the internet; number of real government critiques plus number of batshit crazy critiques over total amount of new content on the internet equals the “Anti-government speech tolerance score” of a country. The AnGST score!

Some of my favorites? The disbelief that the President turned around — how did he know? Never mind that he has an earpiece and that the Secret Service and entire White House staff is watching for any suspicious behavior. That my husband is a multi-millionaire Silicon Valley tech exec. Honey, where are all our millions? Have you been hiding a Silicon Valley palace from me? That I’m not really a diabetic — I only wish! Maybe in the future.

The internet is such wonderful fun. The irony, of course, is that mainstream media has totally forgotten I ever existed, yet I live on in the hearts of the internet crazies! Over and Out And that’s all, folks. Life is now happily back to regularly scheduled programming, which includes lots of work and feeling for baby. It was fun while it lasted, but I’m glad it passed, with me still in one piece. And when all is said and done, it was an honor to be part of such an important part of our country’s history, as we move forward with this legislation that is so crucial for people like me.

A million “Thank you”s to my husband, our friends at the ADA, the staff at the White House, my friends here at ASweetLife.org, everyone who expressed support and love for me during this whole time, and everyone who is still my friend even after my fifteen minutes are over. See you all around!

34 comments

10 Things to Consider if Your Blood Sugar is High

I just read Catherine’s piece about a series of pump and insulin failures (It’s great! Read it!), and I had to shake my head in that oh-I-so-feel-you way.

I’m going on nearly two decades as a diabetic now, but Friday night was a first for me, and one of the worst blood sugar nights I have ever had. I had been trending insulin resistant for a few days — requiring on average about 22 units of insulin per day rather than the standard 14 or 15. This was not too surprising, as — well, I suppose I meant to write a piece announcing this, but it hasn’t happened yet, so here goes nothing– I’m pregnant, and the hormonal ups and downs lead to periodic changes in insulin requirements. Still, heading into Friday night, my insulin behaved like water, and I was just pumping it in with relatively little return on investment. By the evening, I had used some 25 units for the day.

Now, being pregnant, hyperglycemia is my bogeyman. Hyperglycemia is bad bad bad. And not just standard, over 200 hyperglycemia. I now begin to panic when I hit 130 mg/dL. So before bed, when I began to climb to 120, 130, I bolused excessively and walked in circles, trying to bring myself back down. I stayed up for an extra hour, waiting, walking, bolusing. Finally I was closer to 100 mg/dL, and went to bed, annoyed to have had to stay awake longer than desired.

To my chagrin, not an hour later, my CGM woke me up with its buzzing: HIGH. I cursed, got out of bed, measured myself. 139 mg/dL. Damn you, diabetes. Under normal, non-pregnant circumstances, I would bolus and go back to bed. Now, the risk of going up is too high, and I want to make sure I go down first. I left the bedroom, and proceeded to walk and bolus and wait and walk and bolus and wait and watch lame Netflix movies. Cursing diabetes all the way, of course. Another hour and a half goes by in a state of semi-sleepy frustration as my blood sugar resists going down. Finally, I’m heading back down below 120 mg/dL, and I go back to bed.

An hour later, again the buzzing. And the cursing. This time my CGM shows me headed up quickly. 130 mg/dL. I bolus a unit of insulin– which for me, under normal circumstances, is a ton of insulin, and would send me plummeting. But at this point in the night, I have already taken an extra three or four units of insulin trying to get down from 130, and I’m frustrated. I wait for ten minutes in bed, and measure again. 150 mg/dL. Shit. Now I enter panic mode. I take another unit and a half, recognizing how insane that would seem under normal circumstances, but at this point I would welcome a low. I get out of bed. Walk, bolus, wait, walk bolus wait. But this time I don’t hold stubbornly steady; I go up. And up and up. 180. 190. I wake up my husband. I’m impossibly tired, and crying, worried about what I am doing to the baby inside of me. He hugs me, assures me it will be okay, and starts running through the things I should be checking. Change your set. Change your insulin. I changed my insulin cartridge earlier that night, so I knew that wasn’t bad yet, but I changed my infusion set, and I primed my pump to make sure insulin was coming out of the tube.

Is this just insulin resistance? Is this the high-carb meal I ate earlier in the day? I suspect that contributed at first– but 8, 10 hours later would I still be digesting chips? And requiring so much insulin to do so? I have noticed in the past that if I stay awake in the night, I stay higher for longer and require more insulin than if I just bolus for a high and go to sleep– presumably my body’s hormones get all out of whack and I get a midnight version of the dawn phenomenon. Is that what this is? Am I sick? People were sick at work; maybe I’ve caught it and don’t know?

Walk, bolus, wait. I’m some 8 units in since the start of the night, more insulin than I normally take in half a day complete with eating. I keep climbing. Above 200. Occasionally, I start to head down, and I see a glimmer of hope. Then I just start climbing again. 239. Please forgive me, little baby, for what this is doing to you. The hours pass by. Stupid Netflix movies come and go. I’m hovering between 210 and 240 for hours. I am so damn tired. I wake my husband again. Nothing is working. Should we go to the hospital? Not yet, but I don’t know what to do. Did you change the insulin bottle? Did you try taking insulin with a needle? No, I should.

Somewhere around 4:30 AM, for the first time since I started using an insulin pump in 2005, I took insulin with a needle. I opened a new insulin bottle and took two units, right of the bat, which even in my sleepy state seemed crazy to me. But another hour goes by and I’m still 230. I take another two units. I seem to begin to budge, but only barely. 204. I sit there for another half hour. Two units. Now I’ve taken more insulin than I do in an entire day, all in one hellish night.

Finally, finally, finally, my CGM begins to run. And I feel myself begin to go down. 193. I am so happy to see you, 193. 185, 167. At 155, I get back into bed, praying that the oceans of insulin inside me don’t send me crashing. Part of me expecting that they will, and almost welcoming a low.

It’s 6:30 AM when I get back into bed. I have gotten a total of about two hours of sleep. I feel like shit.

At 7:30, I wake up, 69 and heading down. I eat. I get back into bed, squeeze out another half hour of sleep before waking up again, heading down. At that point I give up on sleep and decide I will just get up. The day passes in an exhausted set of couch-camping sessions and reading The 19th Wife, with my husband being the perfect amount of helpful and sympathetic.

And always the post-analysis. What the hell happened, and how can I avoid it in the future? Was it the high-carb meal? Hormonal periodicity? Crazy pregnancy? Staying awake? The fact that I was so frustrated? The insulin pump? The insulin bottle?

The insulin bottle change was the last I made before the tide turned, so that seems like an easy explanation to choose. But I don’t have an independent test, so it could be just that after so much insulin, my body finally reached the threshold it needed. Or it could be the passage of time was finally enough. Or the metaphorical fever broke. Or that meal was finally out of my system (12 hours later?)

Catherine mentions a flow chart; I have a list of things to consider when I am high that I keep on my phone and computer:

 Things to consider if your blood sugar is high 

Is it really?
Did you miscalculate food-to-insulin amounts?
Have you had too low a basal rate?
Did you exercise or move less than normal?
Did you eat or drink something that wasn’t what you thought it was?
Is the infusion set bad?
Is the insulin pooling?

You’ll note that checking the insulin itself is not on there; that is because in my two decades as a diabetic, I have not had a confirmed instance of bad insulin. I have had a handful of suspicions, but never a case where I am sure my insulin was bad. I attribute this to a few things:

1. I don’t travel much.
2. It’s never hot in San Diego.
3. Luck.

The morning after, I added three things to my list; it now reads:

Things to consider if your blood sugar is high

Is it really?
Did you miscalculate food-to-insulin amounts?
Have you had too low a basal rate?
Did you exercise or move less than normal?
Did you eat or drink something that wasn’t what you thought it was?
Is the infusion set bad?
Is the insulin pooling?
Is the insulin bad?
Is the insulin bottle bad?
Is the pump not working? Take injections.

I wish I had an easy in vitro test for the efficacy of the replaced insulin, so I could know. My best measure now will be observing insulin requirements over the next few days; if I continue to seem insulin resistant, then perhaps that is the root cause. If, however, I am back to where I was a week ago, perhaps my insulin had been sub-standard for the last week, reaching an awful climax in the night, the problem worsened by my earlier meal, my frustration, hormones, life, etc.

Thank God all that insulin didn’t make me crash on the other side. Thank God it was Saturday, and I didn’t have to work. Thank God I could wake my husband to both talk me off my emotional ledge and reason through what the response should be when I was too tired and distraught to think. Thank God Saturday night I slept without major issue. I hope and I pray I have not harmed the baby inside of me.

I suppose this is all just practice — when the baby comes out, I will have a new irrational black box to spend all night awake trying to fix!

16 comments

What Obamacare Feels Like to a Diabetic

Others have written much about what the Affordable Care Act (ACA), also known as Obamacare, means for diabetics. I will leave the analysis to the people who have done the research. I just want to tell you what Obamacare feels like to a diabetic.

First, some background on my current healthcare status: I have been with the same HMO, Kaiser, since before I was diagnosed with diabetes at the age of nine. I have therefore felt married to Kaiser; in Kaiser’s eyes, I do not have a pre-existing condition, whereas switching health insurance companies might expose me to being labeled with the big scarlet D for diabetic. Kaiser is pretty good as a health provider so long as you can find good doctors, and I am lucky enough to have lived in big cities with big hospitals where I have lots of choice. I am also lucky enough to have wanted to stay in California all this time, and to have a husband who is very good at talking his way through pharmacies and bureaucracies when I am busy weeping with frustration that they won’t give me the medication I have been prescribed. (That’s a story for another time, though.) All that said, Kaiser raises its rates by 10 – 15% every year, and I don’t like the feeling that if I wanted to change, or needed to move to the East Coast, I would be in a very precarious position.

So on October 1st, I went to my state’s ACA exchange, CoveredCA. I was mostly curious, and wanted to see what the plans and rates would be; even if I want to change my healthcare, I intend to give this whole Obamacare thing a few months to make sure Congress doesn’t knife it in the back right after I make a switch.

But, noncommittal as I was, I was floored by what I saw. I filled out the simple questionnaire on the website to see my options. They asked me about my age, my income, my family size. And that was it. No medical history. No “Do you have diabetes?” No “Are you more likely than average to get kidney disease and retinal disease and neuropathy?” No “Do you cost a fortune because of all the medication you need?” No “Have you already had cataract surgery because of this stupid disease?” Age, income, family size, and then I was presented with options. The same options my healthy-young-male husband sees. The same options every late-twenty-something sees.

It’s an amazing feeling. After almost two decades of feeling tied to a single option– an option I like and am extremely grateful for, but still a single option — I felt liberated. Even now, I get chills just thinking about that feeling of, “Hey, you’re just one of us now.” It’s incredible. It’s profoundly American, to feel like I have choices and the freedom to move.

Even if you don’t intend on changing insurance providers, try it. Go to Healthcare.gov and find your state’s exchange. Fill out the minimal necessary information, and watch in wonder as they present you your options, blind to the secret truth that you have diabetes.

Death and taxes may be all that we are guaranteed, and you could argue back and forth about whether healthcare is a national right, but you’ll have to excuse me while I sit here and enjoy this intoxicating sense of liberty I’ve just been given.

Obamacare. Rock on — please!

 

Update, 2013-10-22: If you or anyone you know is uninsured or shopping for new coverage, check out the American Diabetes Association’s Q&A document The Health Insurance Marketplace and People with Diabetes, and then visit www.healthcare.gov to find your state’s Marketplace. For information on changes to health insurance rules that impact people with diabetes, including both changes that are already in effect and some starting on the first day of next year, check out the American Diabetes Association’s “Health Insurance Update: Protections for People with Diabetes” document.

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That’s So Random

When I was in high school, the phrase du jour was, “That’s so random.” For example:

“OMG, did you see the dress she was wearing?”
“Yeah, that was so random!”

“Hmm, I want ice cream.”
“That’s so random.”

And so on. As you may notice, the use of the word “random” here has little to do with actual randomness, by which I mean having no underlying design and selected from an arbitrary statistical distribution. Really what all the teenagers around me meant was something akin to, “That’s so strange.” (As an aside, the current version of this phrase seems to be, “That’s so awkward.”)

This abuse of the concept of randomness bothered me in high school, and I bring it up now because I find that I still hear “random” misused often, although not by teenagers anymore.

We as diabetics misuse “random” frequently, and I think it is to our detriment. For example:

“Ugh, I ate the same breakfast for the last two days in a row. Yesterday, I went low. Today, I went high. It’s so random!”

“This insulin is like water– I keep bolusing, and nothing is changing. It’s so random sometimes.”

Raise your hand if you’ve said something like that. Yeah, that’s what I thought.

Diabetes is hard. It is unpredictable, and it often seems uncontrollable. But we do ourselves a disservice by calling this unpredictability and variability randomness. Random implies that there is no rhyme or reason, no governing principle behind the changes in blood sugar that we observe. In reality, we often don’t understand or can’t see the physiological inputs, but they _are_ there. Perhaps you have different levels of hormones circulating this morning. Perhaps the tissue around your infusion set is more resistant today. Perhaps the extra mile you walked home yesterday afternoon is having a lasting effect on your metabolism. Perhaps your body is fighting some minor infection you haven’t even noticed. And on and on.

It’s not random; the source of variation is just outside of the parameters we are able to measure. My body in many ways is a black box to me: I put insulin and food and exercise in, and blood glucose values go out. But that black box is not a random-number generator. There is rhyme and reason and cause and effect– it’s all just hidden from me.

So when we say, “That’s so random,” really what we mean is, “I don’t understand what happened to result in that particular blood glucose value.”

What’s wrong with saying diabetes is random, even if it’s technically not? It changes how we think about ourselves and our own control, and perhaps more importantly, it changes how other people think about us and our own control. If diabetes is truly random, an artificial pancreas will never work; a computer is always just going to be reactive if there is no method to this diabetes madness. If diabetes is truly random, why waste my time and effort managing it in a methodical manner? Better to just guess and roll my eyes when I’m wrong.

But diabetes is not truly random. It is unpredictable, and we can’t see all the variables, but overtime we will gain insight into more and more of the variables. We gained insight and control over variables with home blood glucose meters, with CGMs, with faster insulins, with insulin pumps. Technology will continue to progress, and we will get further and further in our quest to understand the system that generates blood glucose values.

Until then, let’s not fool ourselves or others into thinking diabetes is random. Random is scary and uncontrollable. Random is not FDA-approvable. Let’s call it what it is– not, “It’s random,” but, “It’s unpredictable.” “I didn’t see it coming.” “I don’t know what changed inside of me, so I don’t know why it was different today than yesterday.” “It’s variable.”

But it’s not random.

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