The BioHub Brouhaha of 2013: An Animated Retrospective

So most of us know what happened last week with our super top-secret cure-that’s-not-really-a-cure exploding Internet DOC rage fundraising nonsense. And everyone has an opinion on the subject; most of those opinions have already been (very eloquently) expressed in others‘ blogs.

Multiple times, I tried explaining the situation to some non-diabetic, non-DOC friends, family members and co-workers. I work at an advertising and PR firm, so I assumed most of my contemporaries would really get what a shitty PR move the *fauxnouncement* was. Instead, most people just gave me a half-smile as they tried to empathize with a concept they couldn’t really grasp.

So. For those unfamiliar with the “5 more years” nightmare and all the feelings that can beset an Internet-full of diabetics like a bad case of sorbitol-induced diarrhea, I attempted to retell the story using the most expressive content I could find: GIFs.

[Many thanks to Martin Wood, who helped collect the GIFs below.]

March 4, 2013. People with diabetes and parents of children with diabetes across the world began their days with carb-counted bowls of cereal, infusion set changes and finger pricks — as usual. But then, a stirring.

I saw it first on Kim’s Facebook page: a mention from Tom Karlya, Vice President of the Diabetes Research Institute and self-appointed Diabetes Dad, about “What We Have Been Waiting for Since Diagnosis!!!!!!!!!!!!!!!!!!!!!!”



Pretty exciting announcement, right? Only it wasn’t really an announcement. It was an announcement that there would be an another announcement. It was all top secret, see?


Those of us who have had diabetes for 5, 10, 20 or more years were skeptical. After all, we’ve all been told since the day of our diagnosis that a cure for diabetes was “5 to 10 years away.”


We’ve also seen mice, dogs, wombats, fruit flies, Shetland ponies and other lab animals cured of Type 1 diabetes. None of it’s translated to human stuff.

But then, this is Diabetes Dad, right? Dads don’t wildly exaggerate for self-promotional purposes. Dads don’t do things to get your hopes up and then smash them to bits. Dads aren’t mean, are they? What if . . . what if he’s for real?


In other corners of the Internet, some parents of recently diagnosed children were flipping the hell out, God bless them. “They were right!” they must have been thinking. “It’s been 4.5 years since little Johnny was diagnosed, and now, the cure has arrived! The nightmare is over!”


But real information was still hard to come by. Ol’ Diabetes Dad was sworn to secrecy, and the Diabetes Research Institute’s website was down — it takes a lot of website preparation when you’re about to make an announcement that will change the diabetes world. So everyone had the rest of the day — and the night — to dream big dreams about the DRI’s news.


March 5. The time had come. DRI’s website was back in business, and they posted a video that would explain all the details of this diabetes quantum leap.


It was the BioHub! A small sponge-y thing that goes in your body that makes insulin! You don’t have to take anti-rejection drugs! It gets all filled up with re-generated or transplanted islet cells, and the scientists can keep it healthy with “helper cells” and oxygen and things. (For a very well-written description of the BioHub, see Mike Hoskin’s DiabetesMine article.)

Diabetes will be reversed!


The announcement came with a few caveats, though. See, the BioHub hasn’t actually been invented yet. Per se.


Also, the scientists at DRI don’t really know where they’re going to get all these islet cells.


And they don’t really know where in your body they’re going to put the BioHub. Also, it’ll cost a lot. Like, A LOT. And, it’s pretty close to several other projects that are being done by other organizations. So it’s not really a new thing, even though it is really cool and amazing and still imaginary.


At the end of the explanation, the BioHub video tells us that, if we want this thing to actually happen, it’s up to us. And our money.


And the best part: this cure should be ready to go in . . . five to seven years.


I’d say that people were pissed, but that might be an understatement. (According to Diabetes Dad himself, people were particularly nasty in email messages, and some people even threatened him and his family.) The DOC was alight with anger and frustration and other bad feelings.


We’d been promised something cure-like, and instead had been presented with another theoretical treatment that still required lots of money, lots of time, and lots of patience. A theoretical treatment that, if it had been announced without the previous day’s fanfare, would have been welcomed as a big step toward islet cell transplantation.

Now, all the science and technology and forward movement that so many people had worked very hard to accomplish had been overshadowed by one man’s really bad blog post.


Diabetes Dad apologized. When he said things like, “The promise of restoring natural insulin production to millions of children and adults living with diabetes will be outlined” or “I am a diabetes dad……….but it very well may be, for not too much longer,” he didn’t really mean that we were close to a cure for diabetes. He just meant that he needed more money to get closer to making a plan to cure diabetes.


March 6 – Present. Diabetes life goes on. We test, we inject, we eat, we repeat. We try to remain grateful for the amazing tools we do have, and keep a little bit of hope alive for the day when a cure (however you define it) really does arrive.


And we remember that sometimes, as wonderful and dynamic as the Diabetes Online Community is, shit gets out of control — fast. When something sounds too good to be true — even when it’s from a trusted member of the community — it probably is.

It’s better to take a step back, breathe, and go eat a cupcake.


I Hate the Nightlife

It would make sense that low blood sugar and sleep deprivation share some of the same symptoms: confusion, a vague sense of instability, lethargy, hunger, uncontrollable rage unfairly aimed at the family dog. Sleep and sugar are both things our bodies and brains run on, and when they’re in short supply, everything feels . . . wrong.

The difference between sleep deprivation and low blood sugar? One of these problems is easily fixable.

I know it sounds trite and ungrateful and cliché to complain about the lack of sleep that comes with a new baby. But I’ve got diabetes, too, and between those two factors, I honestly don’t believe I’ll get a solid night of sleep any time before 2024.

As much as people assure me that, at six months, little Magpie should be sleeping through the night, she’s just not. Old girl will go three to four hours, tops, but then she’s up for a midnight — or early morning — snack. And during those three to four hours, when I should be clinging desperately to every minute of sleep I can possibly get, I can often be found in the kitchen, draining a juice box or filling my face with Easter candy. Or I’m in the bathroom, rage-bolusing a high blood sugar from a low I overtreated earlier in the night, or changing my infusion set because the rage boluses aren’t working.

Somewhere along the line, my record of almost-perfect overnight blood sugars went off the rails. Now, it seems, I’m either climbing, or crashing, or it’s time to calibrate the sensor, or there’s a weak signal that needs my attention, or my CGM beeps and wails and screams just for its own amusement. Last Thursday I awoke to find that, in my sleep, I’d given myself a 5-hour square bolus of 10 units of insulin. I can’t be sure, but I’m guessing it happened while I was trying to silence an alarm. Thankfully, I caught it a couple of hours in — only 3.5 units had been delivered.

It’s a cycle. The breastfeeding affects my blood sugars, which keeps me from sleeping, which (I swear) affects my blood sugars, which causes me to overtreat a high or low, which sends me in the opposite direction, which wakes me up or makes me more tired . . . you get the idea.

The most tragic part of all of this is that sleeping has always been one of my favorite hobbies. Even when it seemed there was nothing else to look forward to, there was always a nap to be had. I collected pajamas and sheets and pillows the way cyclists hoard bike accessories.

Now I look at the smiling people on mattress commercials and want to throw things at the TV. I’ve got this weird perma-bag that hangs out under my right eye, fluctuating in puffiness according to how much salt and caffeine I’ve consumed in the form of microwave popcorn and Diet Coke.

I’m losing my damn mind, and even if there was something I could do about it, I’m too tired to try.

No insight to this blog post — nothing to learn or appreciate. Just me, complaining about the same stuff millions of other people soldier through every day.  And really, I don’t expect anyone to feel sorry for me, and that’s okay. I’ve got enough self-pity to last a thousand sleepless nights.

The Tinglies

My feet feel weird.

I don’t know how else to say it, and for that reason, I’m not sure what to do about it. And I’m kind of freaked out.

It all started with my “ring toe” on my left foot. (You know, where I wear my wedding band all the time.) A few weeks after I had the Magpie, I noticed it would go numb a few times a day. I blamed it on a few things: exhaustion, pregnancy, tiredness, exhaustion, and not wearing shoes very much (clearly, I was stretching).

Just when I was about to get seriously worried, it went away. All was well with my feet, except that they looked a little like they belonged to komodo dragons.

But now it’s my right foot. On the side, kinda forward from the ankle — it feels like someone glued an extra funny bone to the area where the buckle of my favorite mary janes hits my foot. If I turn my foot a certain way, or twist it a little, or wear a certain pair of shoes, I get this weird nerve-y buzzing tingliness that shoots down the length of my foot to my last two toes. Some days it’s more pronounced than others, but even on the days it’s not there at all, I’m still thinking about it.

Foot issues are the number 1 boogeyman, I think, for most people with diabetes. The threats of blindness and amputation are always there, hiding behind the worst-case-scenario bushes, waiting to jump out and ambush a perfectly good Wednesday afternoon when things might look a little blurrier than usual, or when your right pinky toe starts buzzing in your shoe.

But as much as I’ve heard about taking care of my feet, no one’s really told me what to do if (or when, if you’re a real pessimist) they start to misbehave. Do I call my CDE and waste thirty minutes of her time on something I can only describe as “weird and funny bone-ish?” Do I head to the sketchy Diabetic Foot Wound clinic down the street, and hang out with all the people in wheelchairs in the waiting room? Can I call a normal podiatrist? Should I invest in a thick, sexy pair of diabetic socks? I don’t know.

So far, my main course of treatment has involved poking the afflicted area every 4 to 6 hours to see if it still feels tingly. It does.

After all my worry, it could just turn out that I’m getting older and so are my feet. I mean, if non-diabetic people didn’t have foot issues, too, there wouldn’t be a $927 billion* shoe insert industry in this country, would there?

What say you, diabetic friends of the internet? What’s the first step in foot tingliness investigation? And if it is diabetes-related, then what?

Help a girl — and her feet — out.

If you look very closely, you can see the lightning bolt shooting down the side of my right foot.

If you look very closely, you can see the lightning bolt shooting down the side of my right foot.

*dollar amounts estimated

Oh, the Technology!

I may have been quiet, but while I was holed up with my wee Magpie this past  fall, I spent a lot of time on Facebook. And it seemed like every time I pulled up my timeline, along with cheesy “Repost if you like baby dogs!” updates and stomach-turning political missives, there was a new piece of diabetes technology staring me in the face.

Most of these tech pieces were Dexcom G4 CGMs. My Facebook friends shared pictures of boxes full of new sensors, shots of high-tech display screens, updates on how long each sensor was lasting and how great the radio frequency range was. Some d-friends post pictures of their blood glucose test results on various machines, just to see (and show) how much they can vary from device to device. There’s the meter with the back-lit screen and the friendly reminders, the meter that doubles as a USB drive and automatically uploads blood sugar data to your computer. There’s a meter that connects to your iPhone and a meter that delivers Civil War trivia alongside your blood sugar results.*

verucaAnd I’m not sure if it was the postpartum haze or a lack of real contact with the outside world, but seeing all those terrific gadgets nurtured deep feelings of envy and inadequacy in my insulin-starved soul. I felt like a diabetic Veruca Salt: “But Daddy! want a meter that communicates in conversational English!** I want one now!”

Never mind the fact that I’m attached to thousands of dollars of very sophisticated diabetes management technology that I’m not even using to its fullest potential. I was thrilled to open up my brand-new Revel a few months ago, but I’ve barely glanced at the accompanying guidebook that details all the fancy new upgrades I should be enjoying. All it takes is a few glitches with the Java settings on my computer to discourage me from uploading the weeks of blood sugar patterns stored in my CGM. And I’ll be damned if I can conjure up the energy to change the battery in my OneTouch UltraMini.

All this while there are people out there who can’t even get their hands on a reliable supply of insulin.

Just like  it can with everything else in life, technology has a way of complicating the hell out of the relationship I have with diabetes — both physically and emotionally. There’s almost too much access to information, and then there’s more guilt when I’m not using it the way I feel I should be. And then there’s the green-eyed ogling of my friends’ new doohickies.

What’s vital, I’ve decided, is not conflating the possession of technology with the successful management of diabetes. Instead, it’s best to do the most with what we have, whether that’s a syringe and a bottle of insulin or an insulin pump that lights up the night with warnings and whistles and psychic tendencies. That’s because no piece of diabetes management technology is any smarter or more effective than the person using it, right? Without a user to calibrate and set blood sugar thresholds and do basal tests, an insulin pump is just an expensive little brick.

So, I’m committing myself to contentment. I’ll tweak what I have. I’ll finally go through the Revel owners’ manual. I’ll remind myself that, as jealous as I can get about the longevity of Dexcom sensors, that receiver is still an extra thing to carry around, and that’s not something I want to deal with now. I’ll appreciate the technology behind every “beep” and “boop” that reaches my ears.

I’ll direct all my jealousy toward the people with the spiffiest technology of all: good old-fashioned pancreases.

*Not really, but I’d appreciate it if Bayer or Johnson & Johnson could start working on that.

**I actually have one, but my insurance company won’t cover the strips. I know, I’m shocked, too.

My Regularly Scheduled Diabetes

About 100 years ago, I wrote about how taking good care of diabetes and a baby feels like an impossible feat. Even impossibler than taking good care of diabetes alone.

Time has passed, though. I’m back at work and feeling altogether more like a capable human being. I’m optimistic.

I had a good — if not perfect — appointment with my CDE. My A1c is up a bit, but it’s still surprisingly decent, so I’m trying not to be too hard on myself. We tweaked some basal rates and insulin/carbohydrate ratios to even things out a bit. Also, I brought the Magpie along to the appointment to help deflect any bad vibes. It worked.

I took advantage of the fact that I’d met my deductible for the year and ordered a fresh transmitter for my CGM system, so I’m looking forward to more accurate and consistent readings.

And really, I never thought being at work could feel so liberating. Now I have time for the luxury of blood sugar checks — all day long. I can even check my blood sugar without having to balance my meter case on top of the baby that’s in my lap. I can look things up on my phone or the internet to see how many carbohydrates they have. I can put those carbohydrate calculations into my pump before I eat my food! And then I can actually eat it! After that, I can focus for extended periods of time about things besides nap schedules and diaper sizing and Words With Friends.

When I’m in the office, I can almost feel my health insurance around me like a protective blanket. Even though I was still on the books the entire time I was on maternity leave, I kept expecting to order an insulin refill and discover that my coverage had lapsed. Now I’m surrounded by (mostly) covered sensors and infusion sets, and seeing the FSA funds subtracted from my paycheck makes me feel safe and happy.

And then when I get home, there’s a pair of chubby legs to gnaw on and a little spherical head of silky blond hair to wash in the sink, and it feels less like a chore and more like the old comfortable routine to add up a few dozen grams of carbohydrates or change an infusion set.

For now — for just this tiny second — I feel like I really have everything I need, with the exception of a functioning pancreas, of course.

Taking Care of Two Babies

News flash, everyone! Having a baby is hard. And time-consuming. It’s amazing to me how I can spend an entire day doing nothing — and watching the Magpie do nothing — and end up so exhausted at the end of it.

I knew that having a newborn would be a lot of work. (It’s one of the things people tell you right after they congratulate you on your pregnancy: “Oh, you’re having a baby?! That’s so great. You’re going to feel like total death for several weeks after she arrives!”) What I didn’t know is that I’ve actually been taking care of a baby for almost 22 years now. A real ugly SOB that won’t move out: diabetes.

I’ve compared diabetes to a terrible pet before, and no disease is any fun to manage, but I’ve never felt the intrusion of diabetes’ demands the way that I do now. Before the Magpie, I was always focused on taking care of myself and addressing the demands of Type 1 diabetes before all else. Even when I was pregnant, good diabetes care meant good baby care, so there was never a conflict of interest.

Now, though, I feel like diabetes is there to mess up my attempts at doing normal Mom things successfully. It’s almost like I spent 9 months spoiling this thing, and now it thinks it’s going to get special pregnancy-level attention forever. Not quite.

I wake up to feed one baby in the middle of the night, and the other one needs feeding, too. The Magpie’s crying for milk, and the diabetes wants orange juice — and, depending on my low symptoms, an entire box of cereal. Not a minute after I’ve coaxed one baby to sleep in my lap, the other starts wailing; it’s my CGM alarm, sounding off because I’m low from feeding its sibling. I’m getting better at unclipping my pump from beneath my breastfeeding pillow and silencing an alarm by feel alone, but it’s still hard to do without waking up a barely sleeping Magpie.

Her little peanut toes get caught up in my pump tubing, and my pump gets in the way when I try to hold her baby carrier at my side. I’ve dropped so many granola bar bits on her tiny body as she sleeps in my arms, and I always wonder if she notices the reek of insulin, or if she thinks that’s just normal mommy smell.

The good news is, I’m getting better at it. The Magpie can entertain herself (or stay asleep) for short bursts during the day, so we’ve gotten to the point where I can do things like shower or make a PB&J or change my infusion set without feeling like I’m neglecting my child. And look! I’ve even written two blog posts in the ten weeks since she’s been born.

As frustrating as diabetes management can be — with or without a human baby to take care of — I know I’ve just got to get used to it. For at least the next 18 years, I’ll be carefully tending my two children, balancing the needs of the two (along with my own), feeling that little twinge of guilt on the occasions when I fail one or the other, but heartily celebrating every little success along the way.

This one’s the favorite child.

The Way it All Went Down

One year ago, if you’d told me I’d be putting my birth story on the Internet, I’d have totally thought you were drunk. But, what a difference a pregnancy makes. I feel like it’s important to share what happened, for my own mental clarity and for the sake of pregnant T1s all over the land. That said, I promise not to get gross here.

Picture it: Jacksonville, August 2012. It was a Thursday morning, I was hugely pregnant, and I’d been experiencing weird symptoms for a few days. Part of me felt like something had just shifted — I felt a bit more normal than I had in months, I was feeling a lot of Braxton Hicks contractions, and I had some suspicions that my water had broken. At the same time, I didn’t want to be that person who goes to the hospital 17 times with false labor, so I was trying to keep my cool. I had a standing appointment that morning for a non-stress test, so I figured I’d bring my concerns up as soon as I got to the doctor’s office.

Once I arrived, I explained my situation to the same nurses I’d been seeing twice weekly for the last four weeks. They hooked me up to the fetal heart monitor, and let the OB know what was going on. Everything was pretty much normal, except that the wee one’s heart rate seemed to take a brief dip every several minutes. It didn’t seem like anything to freak out about, they all explained: the baby could just be rolling around, or could have the umbilical cord all wrapped up in her fist. But, given my suspicions about my water breaking, they decided to send me down to Labor and Delivery, just to be safe.

I knew things were getting official when they loaded me into a wheelchair. I ended up in a bright little hotel-like room on the second floor of the building, and met Dana, the nurse who’d be taking care of me that day. Fully expecting to be sent home in a few hours, I changed into the worn blue gown the hospital provided and climbed into the Super Robot Bed 3000 in the corner. Had I known what was coming, I probably would have done a few push-ups first.

My other OB entered the room a short time later to assess the situation. She did a few tests, and sent them off to the local CSI lab, the Pentagon, and several other independent labs for extensive analysis. A few minutes later, the results were back: my water had indeed broken, and I would be having the baby in the next day or two.

The stuffed Peep I used as a focal point to help me withstand labor pains. This may be the only time in my life a Peep has failed me.

This, of course, was the moment that I realized I was not really ready. I hadn’t practiced the Hypnobirthing scripts as much as I’d meant to. I didn’t have my preferences for things like umbilical cord clamping procedures on record. I hadn’t even started writing my baby gift thank-you notes, and I was still lacking a concrete plan for the management of my blood sugars during labor.

My CGM graph the morning of Magpie’s birth. That Regular insulin isn’t so bad, after all.

I talked to my nurse and my OB about my pump and my CGM, and explained that I’d like to keep both of them on and functioning as long as I could, and they were okay with that. And then my blood sugar crashed. Not an hour after I’d been in the room, I was 64 and falling, and freaking out. Here I was, trying to project the image of a diabetic woman who was so in control, so on top of it all, that I could manage the rigors of labor and my blood sugar levels without outside assistance. I felt like a drunk person struggling to stand upright in the middle of my own intervention, insisting that I didn’t even like the taste of alcohol. It didn’t work.

I wasn’t supposed to consume anything but ice for the duration of my hospital stay, but I think that low scared the nurses enough to ensure a steady supply of apple and orange juice. “These are only for emergencies,” Dana the Nurse told me, stacking foil-sealed portions of juice on the bedside table. “You’re not supposed to drink anything, but if you need ’em, you need ’em.”

Contraband juice! And my fancy Fossil meter holder.

Several minutes and a few plastic cups of room-temperature apple juice later, Dana announced that they’d like to hook me up to an insulin drip and have me check my blood sugar every hour. I’d already gotten an IV for the administration of fluids and dextrose and antibiotics, so all it would take was another bag hanging on the little IV stand thingie. I called my CDE, who encouraged me to go along with the doctors’ and nurses’ recommendations. “They know what they’re doing,” she said. “They’ll take good care of you.”

And they did. I was doubtful at first, especially when the nurse walked in with an IV bag of Regular (Regular!) insulin.

“Are you sure about that?” I asked her. “I seriously haven’t used Regular since the mid-nineties.”

She was sure; apparently rapid-acting insulin like Humalog isn’t available for IV administration, so I’d be kicking it old-school for the duration of my labor. Hours later, after my blood sugar had stayed faithfully in the low-100s range, I’d feel like an insulin snob for doubting that bag of Regular insulin. In fact, my blood sugars were pretty much perfect for the rest of the time I was hooked up to their IV, with one exception: during the installation (if you can call it that) of the epidural.

Bob, me and Dana the Nurse. Look how much fun we’re having!

Six or so hours and several dozen deep, relaxing breaths into the labor process, I realized I’d be needing that epidural after all. Driven by curiosity and stubbornness and all the Hypnobirthing hoopla I’d been immersing myself in, I’d gone into the labor experience wanting to see how long I could make it without the meds. This was supposed to be the worst pain ever? But also perfectly natural and experienced by billions of women throughout thousands of years? Bring it on, I thought. Let’s see how I do.

I don’t think I was prepared for the kind of pain I felt. You know those weird little gas bubbles that you sometimes get in random places, like in your ribs or just under your shoulder blades? That’s what it felt like. But instead of a tiny gas bubble, this pain felt more like a giant, pulsating orb of wrenching pressure, almost all the way up my back. Making matters worse, I was tethered to the World’s Most Uncomfortable Hospital Bed by two IV lines and four tubes. There would be no warm showers or walks down the hall or leaning over the bed to ease the pain. I was stuck.

I started sweating. And shaking. And crying. There was wailing and gnashing of teeth — and that was before the anesthesiologist (his name was Dr. Kramp!) began threading the epidural into my spine. That’s, like, the bonus pain — an extra series of pinches and stabs before you can start to get comfortable.

After the epidural was in and my toes began to tingle and itch, my CGM chimed in with a “High” alarm, so I checked my blood sugar. Twenty minutes prior, I’d been happily coasting along at 110. Now I was at 327. Hello, adrenaline rush.

While copious quantities of Regular insulin were pumped into my arm, I settled in for the remainder of labor. I knew I was nowhere near where I needed to be, but the epidural was such a relief that it was almost fun, and I looked forward to hanging out with my friends and my parents while we waited for the Magpie to show up. Just in time to freak my parents out, the nurses strapped an oxygen mask to my face to help stabilize the baby’s heart rate. I mean hey — if you’re going to get into the “medicalization of childbirth,” you might as well go all out, right?

The night passed, and what I remember most about it are that a) I didn’t sleep at all, thanks to continuing hourly blood sugar checks, and b) I had another wonderful nurse, who remained suspiciously chipper and dedicated to my well-being even as the end of her 12-hour shift drew near.

I don’t remember much from the next morning, either, except that I saw the sun rise through the cracked window blinds and enjoyed an invigorating breakfast of ice chips and oxygen. Labor progressed, as labor does, Dana the Nurse returned for Friday’s shift, and my epidural started to wear off in weird places. My back was still killing me, and each time I pushed the magic button for more “juice,” I felt a burning and cramping sensation where the medicine dripped into my back.

It must have been around 10:00 when my primary OB decided that I was ready to start pushing. It was happening! For real! I was out of the “sit around and be uncomfortable” stage of labor and entering the “get it done” stage.

As it would happen, the “get it done” stage of labor and childbirth lasted about two and a half minutes – for me, at least. After just a few pushes, the Magpie’s heart rate started to drop again, and everyone completely lost their shit, to use a technical term.

Suddenly, my labor and delivery room was like a scene out of poorly recreated emergency-room show on the Discovery Health network. I would be having a C-section, and there were at least ten nurses, anesthesiologists, physicians and surgeons swarming around the room to make sure it would be in the next few minutes. A new anesthesiologist cranked about six gallons of extra-special C-section fluid into my existing epidural, and a nurse gave me a small cup of something bitter and disgusting “for your stomach.” They flung me onto a gurney, and as I began to sob uncontrollably, wheeled me into an adjoining operating room.

I’m not proud of how I responded, but I was terrified and pissed off — and I hadn’t slept, eaten, or had anything to drink since my bowl of Cheerios and Diet Coke 28 hours earlier. I began playing my favorite mental game, What Did I Do Wrong and How Could I Have Prevented This?, as the nurses hung up that awful C-section sheet and wrapped my upper body in folded towels. I should have taken my Iron supplement more faithfully, I thought. I shouldn’t have gone with the epidural. I should have waited to start pushing.

God bless the second anesthesiologist on duty that day. She sat next to me and tried to distract my pitiful self with stories about her family, questions about my work and my husband, and jokes about the towels that were positioned around my head. “You look just like Mother Theresa!”

It seemed to take an eternity, but I’m sure it was just a few minutes before she was born. I remember the anesthesiologist telling me that she was out, and then hearing a cry that sounded almost exactly like a kitten. And I was so jacked up on a variety of painkillers that I actually entertained the idea, just for a second, that maybe I’d given birth to a cat instead of a baby person.

After that, I crashed. I remember Bob bringing the baby over, clean and swaddled and be-hatted, for me to look at, and I remember the calm, interested expression on her face. I was still doing all the crying; she just looked at us like, “I’m here. Now what?”

As I struggled to stay awake and/or stop crying, Dana the Nurse accompanied me to my recovery room. I gulped and blubbered, and she leaned over the bed.

The Magpie!

“What’s wrong, honey? Why are you crying?”

I tried to go through all the feelings of self-blame and regret and also joy and disbelief that I was feeling at that moment, but I was too out of it to speak. My mouth wouldn’t work. After several attempts at forming a coherent statement, it was all I could get out: “I’m. So. Fucked. Up.”

And that was it. I passed out for what felt like a day and a half, but was actually just a couple of hours. When I woke, Bob was there with a picture on his phone of our little Magpie, and shortly after I was able to see and hold her myself.

Despite all the drama, I’m proud to report that we didn’t have any real problems — at least not the kind they make Lifetime movies out of. Her blood sugar dipped quite a bit shortly after birth, but she recovered. Also, she had jaundice, so Bob and I spent a few days force-feeding her and strapping her to a tiny tanning bed once we returned home.

It’s the champagne of diet ginger ales, really.

But I did it. I made it out alive, with a kick-ass A1c, a healthy (if early) baby girl, and a crazy new scar. We spent the next several days on the Maternity floor, introducing the Magpie to her new friends, enjoying scrumptious hospital “diabetic” meals, gulping pain medications and watching bad TV.

People always talk about that moment that you get into the car with your new tiny family member and wonder, “What are we doing? How are we allowed to leave with this baby?” I didn’t feel that, though. We clicked the Magpie’s car seat into its base and started our 3-mile trip home through the rain. We merged onto the highway, and I turned to Bob.

“I could totally do this again,” I said. “Couldn’t you?”

Meet the Magpie*

In what’s becoming her signature style, she showed up unexpectedly — almost 4 weeks before her expected due date.

But she’s arrived! Born at 11:08 AM on August 24. Six pounds and 5 ounces of sweet, amazing, healthy babyness.

Thanks to an aggressive regimen of painkillers, a lack of continuous sleep, and the overwhelming nature of the emotions I’m feeling toward this little lady, I don’t have many clear thoughts to offer about her presence in our lives right now. hernmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm (<– The cat typed this. I’m leaving it.)

For now, suffice it to say that I’m making a habit of bursting into tears at the randomest of moments. Not because I’m sad, though. I’d say it’s because I’m sleep deprived, maybe just a little unprepared, tremendously relieved that I managed to pull off the diabetes-and-pregnancy mix, and totally confused about how anyone can function normally in the world with such a ridiculous amount of  love for another tiny person in their hearts.

It’s been insane, and I’m so happy she’s here.

*Of course, I did not actually name my child Magpie. But I don’t feel right creating an online identity for a 12-day-old. So, that’s her name here!

Having the Baby. And Diabetes, Too.

Several weeks ago, I insisted that I wasn’t going to bother with a birth plan. I may have been lying.

I’m at 34 weeks now — too swollen and exhausted, it seems, to keep up with much of normal life, including regular blogging.

All along, I’ve tried to ignore the fact that this child I’ve been growing actually has to get out of my body somehow, but I can’t really do that anymore. Faced with the reality of things like nature and physics and the miracle of life, I signed up for a few birthing classes. Those classes have done more than introduce me to words like “effacement” and “fontanelle” — they’ve opened up an entirely new can of gummy worms when it comes to how I think about my body, how sick it is, and what I can and cannot pull off as a person with diabetes. What fun!

Last weekend, we completed our hypnobirthing course. As batshit crazy as the name makes it sound, hypnobirthing is essentially just an approach to childbirth that emphasizes deep relaxation and trust in the capabilities of one’s own body. (Can you guess where this gets tricky?) The basic idea: the more educated you are about what’s actually happening with your muscles and body parts and your baby, and the less freaked out you are, the easier the birth. I decided I wanted to take this class because the group teaching it is supportive of necessary medical interventions and emphasized staying cool no matter what obstacles or twists might come up during the birthin’ process. I didn’t want to end up in a class where some nutso with dread locks would to try to shame me into having my child at home in a baby pool full of kombucha.

When I signed up, I made sure to let the instructor know what my situation was: that I was pregnant with Type 1 diabetes, that — so far — I had no reason to expect a cesarean section, and that I’d made it this far without any diabetes-related pregnancy complications. “Lookit me!” I thought. “I’m almost normal!”

As we went through the hours of instruction and homework assignments, I realized I was going to have to put my diabetes in its own little cage for portions of the process. The CDs we got, the reading materials we received and the instructor we worked with all repeat the same message: Relax. Your body knows what it’s doing. It’s a hard message for me to absorb — at least without a bit of maniacal laughter.

So I removed my pancreas from the equation. Yes, it’s true that I’ve spent the last two decades regulating the tumultuous relationship between my liver, my pancreas, the food that keeps me alive and almost every other system in my body, but this whole baby thing hasn’t been half as disastrous as I’d been led to believe it would be. Maybe my body sucks at keeping its immune system from attacking its own digestive organs, but has been waiting all these years to demonstrate how good it is at growing a person and then bringing that person into the world without any unnecessary drama.

The doula/instructor kind of blew me away when she posed the question to the class: “We’re all preparing for the bad stuff. But what if you have your baby and everything goes okay?” I realized it was a thought I’d never even considered, and what a difference it could make in the way I view the events of the coming weeks. Or hell — the way I look at my entire life, with and without diabetes!

But since I am who I am and because I have an OB who’d like to hang on to her medical malpractice insurance, things may not be that simple. When I saw her on Monday, I brought up some of the bigger issues that were floating around in my head. Like, can I move around when I’m in labor? (A little.) Will I be on a strict labor progression schedule while I’m in the hospital? (Pretty much.) How long can I go before you guys get all induction-happy? (39 weeks.)

I could tell she was getting flustered. “I don’t want you to have a vision of this perfect, ideal birth, and then feel like you failed because we end up having to do something different than what you planned,” she explained. She then went on to mention complications like intrauterine fetal death and placenta degradation and how it was her responsibility to avoid these things.

I get (and appreciate) that. I do. I love western medicine. I just don’t want to be treated like another faceless Type 1 diabetic mother from an outdated study — especially when I’ve worked my water-retaining ass off to keep my blood sugars as close to normal as possible and there’s no evidence of any diabetes-related badness taking place at this point. Does that make me prideful? Ignorant? Completely naive?

Here’s what’s hard: managing the day-to-day details of the world’s most intense do-it-yourself treatment plan — for 20 years — and then being expected to surrender complete control of your body and your baby to a team of doctors and nurses who may or may not make certain decisions for their own convenience.

Of course, I don’t know how any of this is going to play out. Maybe I’ll need a c-section after all. Maybe I’ll have one of those mythical 30-minute labors. Maybe I’ll have the baby in the back of a cab, even though I never take cabs, because that’s what happens in the movies.

I just need everything to be okay, and between now and September Whateverth, to be able to maintain the  assumption that it will be. Wish me luck.

Friends for Life — with a Stowaway

About two weeks ago, for the second year in a row, I joined thousands of others in a pilgrimage to Orlando for CWD FFL 2012. (That’s Children With Diabetes Friends For Life, for those of you who prefer words to acronyms.) Put simply, Friends for Life is a jam-packed week of keynotes, emotional and social support, health information sessions, fancy medical exhibits, planned and unplanned social gatherings, freebies and other craziness — all created just for people (mostly children) with Type 1 diabetes and their loved ones.

The biggest difference between this year and last year, besides all the rad new people I got to meet in person? Baby Weejcik, of course.

Belly, You Can Do This sticker, and green bracelet — all in the same picture. Thanks to Scully for the shot.

And what a difference she made. I found myself in more nuts-and-bolts informational sessions than I did last year. I listened to Gary Scheiner, who may be the smartest man on earth, talk about the best strategies for treating low blood sugars. (Fun fact: Nerds, Spree, and Runts, since they contain dextrose, are among the best candies to use to treat hypoglycemia.) Lows are always an issue for all of us, but beating them into submission has become an area of special concern since I’ve been pregnant; there are just so many more of them.

Steven Edelman led a great session on self-care for adults beyond insulin and test strips. This was an hour that stuck with me, and here’s why: for the first time since my diagnosis, I feel like I’m really questioning the things that doctors have told me will and will not happen as I age with diabetes — the things I can and cannot do. I gleaned from personal experience many moons ago that I could probably get away with going barefoot around the house, even though the Diabetes Powers That Be will tell us it’s dangerous. It’s the same, now, with this pregnancy — everyone’s so used to presenting (and hearing) the worst-case scenarios that reality gets lost along the way. I felt like Dr. Edelman broke down the complicated complication story in a way that was accessible and hopeful. Yes, you should floss once a day. But no, you don’t have to check your feet every night before you go to bed. And stop worrying about going blind — as long as you keep up with your yearly exams, it almost definitely won’t happen. The best part was that all of these messages were delivered by a dude who’s been living with Type 1 diabetes since the urine test tube days of yore — and if I may say so, he looks pretty damn good. Dr. Edelman closed with this quote from Sir William Osler, and I’ve thought about it almost constantly since then: “If you want to live a long life, get a chronic disease and learn how to take care of it.” Amen, y’all.

Socially speaking, Baby Weejcik made her presence known through waves of exhaustion that hit at the most random and unwelcome of times. Last year, I burned the midnight insulin with the best of ’em, getting to know my new friends and drinking Diet Coke like it was my job. But this year, although I had a wonderful time, I felt like I was constantly battling to keep up with everyone and everything — or sneaking out of events and gatherings early to crash in the super-air-conditioned condo we rented for the week. One particular event stands out: an entire diabetic mob of us (I think there were 19 total) had tickets for a 10:30 (PM!) viewing of The Amazing Spiderman in IMAX 3D. I managed to stay awake, but had to carefully pace my ingestion of liquids; there were like 14 flights of stairs between my seat and the nearest bathroom. And at the end of the movie, Bob and I were in the car before the credits had stopped rolling. It was frustrating to be among so many people I was so excited to see and talk to, but to feel totally zombie-fied at the same time.

I should have had my own t-shirt made: “Diabetes doesn’t slow me down, but pregnancy completely kicks my ass.”

The important thing is that I made it. I soaked up tons of information, scored a new Verio IQ (whose nifty light-up feature has come in handy during 2:00 AM blood sugar checks), ate a lot of ice cream, saw some good friends advocate their asses off, and added dozens of new names to my list of “Rad People I’ve Met in Real Life.”

Just like last year, the emotional effect of the week didn’t strike me until after the conference had ended. Bob and I were full of hotel bacon and room-temperature hash browns, all packed up and headed east on I-4, when The Flaming Lips’ “Do You Realize??” came on the radio.

Damn it. Happiness makes me cry, indeed — or maybe it’s just the pregnancy hormones.