« July 2012 | Main | September 2012 »

August 31, 2012

From Abby: Ballet Adventures.

While I reset my body clock after a week in California, Abby is sharing her tales of Swan Lake ... or some version of Sugar-Free Sea?  (Terrible joke, I know.  Forgive me. I'm jet-laggish.)

*   *   *
Diabetes is a huge part of my life. Eight hours of my day is spent thinking professionally about other peoples' diabetes, and the other 16 are spent trying to avoid thinking about my own. So when diabetes pops up in my life activities where I'd really it rather take a nap, things can get shaky.

I decided to take a ballet class this summer. I took ballet one year when I was five years old. I wore a pink tutu and danced to a song called "Pretty in Pink". I was also going through a series of head/skin surgeries, and remember that whole "balance not being my forte" thing? Needless to say, the American Ballet Company did not call my house. Going forward, I took dance classes on and off, jazz, tap, modern, Broadway - a smattering of not-serious but good exercise, with some time to relax hours here and there.

I love to dance. I am not very good at it. I don't care. An eight-week ballet program for beginner adults with nobody that I knew in the class was such a wonderful choice for me. And until week six diabetes stayed quiet.

Dexy and some ballet slippers. Abby's attempt at being artsy.

That changed. I wasn't wearing dexy (took a day off) and tested my BG at our break. 114mg/dL. I was 120ish before class started, so I took a few swigs of watered-down Gatorade and went back at my sad attempts at grace. But you know how if you don't act on a blood sugar with a Medtronic pump it beeps at you like three minutes later? Yeah, that happened. The whole class looked at me, quizzically.

"Oh, that was me. I just tested my blood sugar. But I'm fine. Carry on."

"Do you need us to stop?"

"Oh no, thanks though. I'm great!"

Then there was week seven. When a 63 mg/dL cropped up at half-time. Right before the weird waltzy-spinny-jump-like-a-cat sequence across the floor. I grabbed six glucose tabs and walked back into the room.

"I'm going to just sit this one out, my blood sugar is low" I said, with a mouthful of powdery glucose tab mush.

"Ok sure! Everyone else line up." said tiny teacher, in her abnormally peppy voice.

Again - end of conversation. Nobody even acknowledged what was going on. All the girls in the class probably have best friends and cousins with diabetes, which accounts for their nonchalance. I'm sure that's the case. Couldn't be that diabetes is getting a ton of press these days, thanks to a bunch of advocates. No way.

I'd say that this is an example of solid progress. People my age found out I have diabetes and they didn't even care. That is awesome. 

*   *   *

August 30, 2012

Guest Post: decAY1c.

Aside from his affinity for glucose tabs and wearing mustaches mounted on jaunty little sticks, Christopher Angell is also a former blogger.  He claims to have zero interest in reviving his old blog, but he was wiling to guest blog on SUM about the perils of dental apathy and his newly-minted term:  decAY1c.

*   *   *

Last week, for the first time in far longer than intended, I spent a few hours in the dentist's chair.  It was my first dental treatment in years, following an exam/consultation 10 days prior to establish what I was working with, mouth-wise.  Some highlights of that visit included:

"You do know that this tooth is cracked, right?"
"Wow, that other tooth was really bad, but this is definitely the worst."
"You know, you're really not supposed to wait this long to go to the dentist."

No, you're not.  Nobody is, but people with diabetes such as myself are particularly ill-advised to invite decay or surgery on themselves, oral or otherwise. Add to that my many middle-of-the-night hypos dispatched with glucose tabs (but not with an extra brushing) and my mouth was deep in the danger zone. This was confirmed by the 2-page laundry list of necessary procedures they sent me home with, including one extraction, two crowns, two rounds of scaling (whatever that is), and some other stuff, the shorthand for which I can't decode.

So how did it get so bad? In every other regard, I'm an acceptably responsible patient:  I have kept my A1c at or below 6 for well over a year. I get my full blood work done 3-4 times/year,  and my cholesterol is excellent. I had a full dilated eye exam this year.  I refill all of my prescriptions on schedule (and am a bit of an insulin/test strip hoarder, an artifact of spending the first 9 months of my diabetic life with no insurance coverage and buying my supplies on eBay). I have trained for and completed two running races this year with mileage in the double-digits. What makes me such a disaster in the dental arena?

The obvious answer would be that I hate going to the dentist, but that's just not the case.  I've never hated going to the dentist.  I can't say I love it, but I definitely prefer it to the 405 during rush hour, or watching an Adam Sandler movie made after 2008.  

Is it the cost? That could be a factor.  The last dentist I went to see (also for a long overdue extraction) did not take my insurance, and he too sent me home with a lengthy treatment plan.  This plan, however, was almost five times the cost of my current one, threatening to tip into 5 digits.  That extraction cost over ten times what my most recent one did. I was in no hurry to rush back and fork over all that cash.  Still, I spend significantly more than that each year on the rest of my medical expenses, between premiums, copays, deductibles, and uncovered expenses.  So clearly, there is a priority gap.

I think at the end of the day, dental care is just easier for me to ignore.  How many times in the past two and a half years did I say "I need to go to the dentist"?  Lots.  There was one missed appointment, a few half-hearted plans to seek cheaper treatment in Mexico (not uncommon here in San Diego), and guilt-ridden bouts of compensatory overzealous brushing, flossing, and gum-massaging.  But, absent any acute symptoms (which, miraculously given the sorry state of my chompers, I managed to avoid) it was always easy to put off actually getting to the chair.

Diabetes care, on the other hand, is a lot harder to ignore.  With 4-8 daily finger sticks, a CGM, and familiar symptoms on both the high and low end of bg-land, your head has to be pretty deep in the sand not to have a sense of what’s going on there.  The effects of exercise (or not exercising) on my health are felt almost immediately.  It goes without saying that if I stopped going to my endo or GP, and stopped getting prescriptions for insulin and test strips, that the consequences for my health would be impossible to disregard.  But (as I so gracefully demonstrated) it’s possible to go many years without a dental exam and experience few, if any, symptoms, even while serious problems exist and continue to worsen.  One of my teeth was, according to my dentist, just the tiniest bit shy of needing a root canal yet I had no idea.  I couldn’t even tell that one of my teeth is CRACKED COMPLETELY IN HALF.

So what to do?  Unfortunately,  a Google search for "home toothometer" turned up no useful results, and so far no one has come up with a better method than dentist's x-rays for measuring decAY1c (in fact, decAY1c isn’t even a thing. yet.).  So I'm going to try a more low-tech approach: schedule my next check-up and cleaning while I'm paying for my last one. That, and mentally preparing myself for an all-liquid diet starting at age 40.
*   *   *

(Ready?  Here we go with the Formal Bio.)  Christopher Angell is the Creator and Chief Person With Diabetes (PWD) of GlucoLift All-Natural Glucose Tablets.  Diagnosed with type 1 diabetes in 2007 at age 30, Christopher learned first-hand that for people living with a chronic illness little things, like the taste of a glucose tablet, can have a huge impact on quality of life over time. Dissatisfied by glucose products whose chalkiness and artificial ingredients unnecessarily exacerbated the unpleasantness of the low blood sugar episodes they were intended to treat, Christopher created GlucoLift so that people with diabetes could have a delicious, effective and natural way to raise their blood sugar.   He currently lives with his wife in San Diego, CA (and tonight he's on DSMA Live - be sure to tune in!)

August 28, 2012

Biking in Acadia Park: The Low Chronicles.

Last week, Chris and I took a skip up north to spend some time in one of our favorite places in New England:  Bar Harbor, Maine.  (And ha - a skip?  Six hour drive.  You can begin and end a relationship in that amount of time.  Or write a children's book.  Or scour Spotify for fabulously terrible 80's and 90's songs.  We have tested all of these options.)

We love Bar Harbor because it gives us some quality time to play outside.  We've gone camping, and hiking, and this year, we went biking around Mount Desert Island.  On the whole, I can hold my own when it comes to outdoorsy type crap.  If Chris wants to go hiking up Mount Goram, I can keep up with him.  Leisurely hike around Jordan Pond?  I'm all over it.  Biking 15 miles along the carriage trails in Acadia Park?  Bring it on. 

View from Cadillac Mountain.
View from Cadillac Mountain.

My favorite restaurant EVER.
2 Cats - best breakfast EVER.
Unless I'm low.

After a hearty (and delicious) breakfast at the Two Cats Inn, we went into the bike rental place to get suited up with bikes and helmets.  I checked the Dexcom while we were waiting for the guy to bring our bikes around, and was surprised to see 89 mg/dL and an downward-trending arrow.

"Bit low," I said to Chris, reaching into our backpack for some glucose tabs.  "I may have overbolused for breakfast."

We grabbed two extra bottles of Gatorade to complement the array of glucose tabs (thanks, GlucoLift!) and after I chomped four tabs and took a long sip of Gatorade, we started our ride up to Acadia Park.

I'm not a bike rider (as evidenced by the fact that I didn't use the word "cyclist"), but I knew that my legs shouldn't have been as wobbly as they were.  I was jittery and sweating madly, even though we'd been on the road for literally minutes.  

"I need to stop for a minute and have some more Gatorade.  And I think I need to wait a few for this crap to hit my system."  We pulled off to the side of the road and I tested my blood sugar.  97 mg/dL, but the Dexcom still warned of a low on tap.

So began 35 minutes of stupidity.  I should have stayed on the side of the road and waited for however long it took to see upward trending arrows.  Or at least until my legs started feeling more like they were made out of flesh and bone and less like they were inhabited by SpaghettiOs.  Chris has the patience of a much saintlier type of person, and he would have waited.

Instead, after a few minutes, I announced, "I'm good," and encouraged him to set our pace.  I rode behind him and struggled.  Bears on unicycles have better balance than I had during those first few miles.  Temp basal would have been useless - it was already cranked down to 0.25u per hour for our trip, and I was iffy on turning the pump off for a bit because I didn't want to encourage any ketones.  I felt my blood sugar laboring to get up the hypoglycemia hill as much as I was physically trying to push my bike up the road.  

It wasn't until we were at least six miles into our journey that I started to feel human.  (I knew when I was around the magic 90 mg/dL mark, because I felt like proper athlete, all sweating for reasons of exertion and not due to hypoglycemia.)  It took another few miles to hit stride, with a blood sugar of 130 mg/dL finally showing up on my meter.  And then it felt awesome. Fun.  Outdoorsy and fresh-airy.  Overall, we did close to 16 miles of the hilly Acadia National Park, and despite crushing through as many glucose tabs and the bottle of Gatorade, it was awesome.

Look, Ma!  I'm infusin'!

A bit later, as we ate lunch at the Jordan Pond Teahouse, I looked at my Dexcom graph and saw it plotting steadily between 70 - 130.  My belly was full of freshly baked popovers and blueberry tea (and glucose tabs).  And Chris and I didn't have unruly bicycle helmet hair.  

I'll take it. 
Jordan Pond.

August 27, 2012

Temporary Reward.

"Oooh, you Dexcom is coming off, Mama."

She examined the sensor close up, touching the feathered edges.

"It is.  But it'll hang on for a bit.  Thankfully, I have these dinosaur tattoos to protect it," I said, gesturing towards the two garish temporary tattoos stuck to my thigh, my legs the victim of a first birthday party gift bag we scored earlier in the day.

"We put that there!  Dinosaurs on you ... your Dexcom.  Rawr!!!!!!!"

Buddy and Tiny ... Dinosaur Train!!!

Later that night, I scrubbed at the dinosaurs but they didn't budge.  ("Hey now," they seemed to say as I tried to slough them off with a facecloth.)  I didn't exactly mind - they make me feel like I'm temporarily rewarded for making the sensor last as long as I can.  And today, they're still hanging tough, keeping creepy watch over my Dexcom sensor as I do the diabetes daily duties.

This morning, when Birdy woke up, she popped her thumb out of her mouth and immediately asked me if the tattoos were still there.

"You still have the rawr dinosaurs on your leg by the Dexcom, Mama?"  

I showed her the slightly-tattered-but-still-holding-on evidence.

"Nice job, Mama.  They look tough."

Rawr, diabetes.

August 24, 2012

Insulin Haiku.

Insulin:  It's what's for dinner.

Such a small bottle
with such a huge influence
on my whole damn life. 

August 23, 2012

Guest Post: Insulindependence in NC!

Harry Thompson is awesome, and aside from being one of the wordsmithiest people I've met and having one of the cutest kids ever, he's a fellow PWD.  And he's looking to connect with other people with diabetes who have exercise not only as part of their health management regimen, but as a passion.  Today, Harry is guest posting about his involvement with Insulindependence, and looking for some North Carolina local PWD!

*   *   *

Hi Harry!!!!I was diagnosed with type 1 shortly before my 12th birthday. I've always been an active person - I played baseball throughout high school, rowed competitively in college, and have been an avid runner, cyclist, and occasional triathlete in my adult life. (Of course that's become harder as I get older, with work, family, and toddler-wrangling, but those are challenges already well-documented by the proprietor of this fine blog.)

I ran my first half-marathon in roughly 2 hours and 20 minutes. That's not really impressive from a competitive standpoint...there are people who have run full marathons in less time. The reason I mention the time is that the duration of a single athletic event is longer than the combined time I've spent with my endocrinologist in the past two years. I don't mean that as a complaint, really. He's a great doctor, and I think I've done everything I can to milk every drop of goodness out of our time together - I see him 3-4 times a year, I bring all of my logs and graphs, and have all my questions prepared in advance. However, it seems that whenever I would ask my endo about how to prepare for an upcoming event or race, the answer was something like: "No one has ever asked that before. I would say cut your basal in half and test every hour. Let me know how that goes! Also, here are a couple of book titles you can check out."

I get it. He's an endocrinologist, not an exercise physiologist. I imagine many of his appointments are an uphill battle of getting patients to test their blood sugar and take their meds on a regular basis, so it's hard to be prepared for the questions from people that are trying to push their personal limits. And even if he was more familiar with that end of the spectrum, he's not there during the months of training, or the day before the race, or the morning of the race when I wake up at 300 mg/dl for no reason. So like many other things with diabetes, I had to figure it out for myself.

For many years, I truly felt like I was by myself. I didn't personally know any other athletes with diabetes. I knew they were out there - I'd read about Gary Hall Jr. and Steve Redgrave, but they seemed so far out of reach. As time went on, those other active diabetics became a little easier to find. I'd run across a TuDiabetes discussion here, or a blog post there. Eventually, I even had the chance to talk to some of the actual people that were mentioned as examples in those books my doctor had recommended.

For me, the real "a-ha" moment was when I discovered Insulindependence. Finally, an organization that exists to bring together and support active diabetics, rather than treating fitness goals as an afterthought! Through several friends that were involved with the organization, I learned about the various Insulindependence clubs (Glucomotive, Triabetes, Testing Limits, and A1Sea) as well as their monthly local chapter events, known as Dawn Phenoms. I started to get envious of other cities that had existing chapters, and thought how awesome it would be to have the opportunity to show up at a Dawn Phenom, meet other diabetics, and share stories of how they deal with the challenges of diabetes and exercise.

One slight complication (or "People of the Internet, I need your help!")...unfortunately, the Charlotte, NC area that I call home has no existing Insulindependence chapter. While it's an inconvenient truth, there is a silver lining. I've always had trouble finding my niche in the diabetes advocacy world. I tried my own blog for a while, but it just didn't feel natural. I think the JDRF and ADA do some fine work, I've just never found my place in those organizations. With Insulindependence though, I feel like this is finally a place where I fit in and can make a difference.

So long story short, I've volunteered to get the Charlotte chapter up and running (fitness pun!), but I'm starting from scratch. I know a few local diabetics; I have the books and support of the organization, but I need the network of other people that have the same goals. I know that finding SixUntilMe was a breakthrough moment for me, and it opened my eyes to the amazing interconnected world of the DOC. The reason that I've asked Kerri for the opportunity to write this guest post is that hopefully there are some fellow readers out there that are either in the Charlotte area themselves, or that you might know someone that would like to join our young chapter. I can't promise that charter membership in the chapter will get you any insulin discounts, but I can promise good conversation and a good time sharing ideas with at least one other active diabetic in the area.

If you or anyone you know is interested, please contact me at CLT.Insulindependence@gmail.com so that I can share the details of our local events, which will be starting in September! And even if you've never heard of Charlotte, I hope you'll consider becoming a member of Insulindependence. It's free, easy, and you'll be in the company of many other awesome people. And me.

Thanks to you for reading and to Kerri for the opportunity to use her soapbox!

*   *   *
Harry and his wife Meredith live in North Carolina with their gorgeous blonde almost-two-year-old daughter and a pair of lethargic felines. Harry may someday return to blogging at 25 Units To Go. In the meantime, you can follow him on Twitter @harrythompson.

August 22, 2012

From Abby: Absolutely Not Medical Advice.

Like we said before, this is NOT medical advice.  Not even close.  But Abby has some opinions that are influenced by her years with type 1 diabetes, her nursing degree, and all the stuff she hears people saying about diabetes, and she wants to share those opinions here.  
*   *   *

Myth #3: ALL METERS SHOULD BE ACCURATE ALL THE TIME - ALWAYS!
I love me some accuracy. I fully appreciate and take advantage of the photo opportunity that is a matching finger stick and Dexcom reading. That being said, I want people to remember something about the 20% frustration factor. Think about the fact that labs are little tiny experiments, whether a finger stick glucose reading or a lab draw for yearly cholesterol - it is measuring a small (like, really really small) sample of fluid and figuring out how many of that "thing" is in that sample. You try making technology that requires a micro-amount of capillary blood that will give you the same reading every time. The bigger problem here is that when you think about it there is NO WAY that the glucose concentration in your pinky finger is the same as in your antecubital as in your ear lobe. It's impossible! How could it be the same throughout your body?

What helps? Using the same meter all the time, using unexpired strips, getting a new meter every two - three years, and only base your medication dosing on that meter. When you think about it, if your particular meter reads 100 mg/dL, but your venous blood is 120 it's fine because you're going to do the same thing every single time with that meter reading of 100, which will result in a consistent A1c that will match. See? Stop using 48 different meters and getting mad because they are 8 points off from each other. The key to science is consistency, and diabetes is science.

Note: if you feel low, and your meter reads an in-range number, get back to basics. Wash your hands, chose a new finger, and test again with an ample sample. Test strips are mass manufactured and they are not perfect all the time.  Also, remember than any blood glucose reading is more accurate than a urine strip that gives a vague reading of "in between brown and greenish but more on the brown side" on it.  There has been progress!

Myth #4: My hydration status does not effect my diabetes. Water is not insulin.
Okay, this is sort of kind of true and not true. Fact: Water is not insulin. Fact: Hydration has a HUGE effect on diabetes. Like, arguably the biggest effect of anything short of pasta. I actually heard a doctor say in a lecture a few weeks ago "I've seen people admitted with HHS (the type 2 version of DKA) whose blood sugar went from 1500 mg/dL to 800 mg/dL after two liters of fluids and no medication." Want more evidence of hydration influence? Think about the symptoms you have when you are dehydrated - thirsty, dizzy, nauseous, headache ... sound familiar? If not, you've never felt a high blood sugar. More fluid dilutes your blood, which lowers the ratio of glucose to blood, which is also known as mg/dL - which is how you measure your finger stick glucose on your tiny little meter. So, it's safe to say, that if you are dehydrated your "blood sugar" will increase. Thirsty yet?

(Please note that water is not a substitute for medication. Ever. In any sense of the idea. Ever. Do not drink a bottle of water and think you don't need insulin or your pills. It's not true. It never will be true. What you can do, is if you have a stubborn high that you're afraid of rage bolusing into a low, drink some extra water and wait a little bit - it might not do anything, but a little extra water never hurt anyone right?*)

*If you have kidney, heart, or any other sort of medical issue PLEASE PLEASE follow your doctor's plans for fluids. I am aware that many people have a strict fluid intake limit. Again, this is Absolutely Not Medical Advice. Ever. Seriously.

*   *   *

August 21, 2012

Low.

I look at this and wonder how on earth I didn't wake up to all of the alarms throughout the night, ringing and vibrating from the glass on the bedside table.

And then, in one swift motion, I'm thankful that I woke up at all.

August 20, 2012

Twenty-Eight.

Birdzone,

The world is yours to figure out, and you're making leaps and bounds every day.  No longer my baby but now a kid with the highest, squeakiest little voice I've ever heard, I watch every day as you make sense of this existence. 

You have learned that when I make airplane noises with your fork or spoon, it encourages you to take a bite of those slightly off-putting peas, or maybe a mouthful of chicken.  But you've taken to making airplane noises of your own to make ME take a bite of those same gross peas.  I can't say no when you're careening the fork towards my face, making your best "raaaaaarrr!" airplane noise.

We're done with that crib - "Cribs are for babies, okay, mama?  I'm a big girl, only I'm still little but getting BIGGER." - and you're in a bed that doesn't keep you contained.  Which means we have gone through that awkward "stay in bed" transition, where Mom and Dad need to trick you into staying in bed at night.  There's a routine in play that I love with my whole heart:  I climb into your bed and we snuggle, recapping what we did that day and talking about what we want to do tomorrow.  And Daddy is on the floor, resting on a Thomas the Tank Engine pillow, listening to us ramble on.  I go to leave - "Goodnight - I love you!" - and you ask, "Daddy stay for two more minutes?"  Which he always does, because your little finger is where he lives, all wrapped around.

You have some semblance of what your mom and dad do to earn their keep around this house, only it's kind of confusing because most of these tasks seem to live inside of the computer.  (Or, as you call it, "the 'puter.") You know he and I both write things for a living, and that you'd like to also write.  "I like ALL the letters, mama."

The Dexcom is your new favorite plaything.  "Oh, your DEXCOM!"  You like to yell that particular word, probably because the thing is always yelling at me.  (My blood sugar threshold alarms are set at 60 and 160 mg/dL, so around an hour or so after I eat, I hear the BEEEEEP!  At which point you run and grab the receiver, then bring it to me, and tell me, "Time to checka meh-cine?  Okay!")  My "diabeedles" is something you're not highly concerned with, but you always give me a strange look when I test my blood sugar and then lick my finger.  "Taste yummy?  Or yucky?"  And at the beach this week, you noticed my sensor was peeling off.  "That come off soon."  When it did yawn off, later in the day, you nodded with vigor.  "Told you!"

Everything is so new, and you greet the day with an unrivaled level of amazement.  The clothes coming out of the dryer, all clean and fresh, amaze you.  The tree outside with the pears growing on it amazes you.  Flying kites in the windy sky amazes you. 

And you take the world in, marveling at every little inch of it, not noticing that your mom and dad are doing the same to you.

All my love,
Mommy.

August 17, 2012

The Friday Six: CreepyTown and Keeping Cool.

Hi!  I have links!  And exclamation points!  Which means it's time for a Friday Six

The Friday Six:  August 17, 2012 edition1.  I'm proud to be part of the latest JDRF Countdown magazine, with an article about keeping insulin and other diabetes supplies chilled out in the summer heat.  Click here to check out Keeping Cool: Climate Control for Type 1 Diabetes Management.

2.  It's on for the 2012 Celebrity Chef Sandwich Challenge (I didn't know this even existed until yesterday), and fellow person with diabetes Sam Talbot is up as a finalist.  If his recipe receives the most votes, the JDRF scores a ten thousand dollar donation.  It takes about four seconds to vote, so if you have four seconds handy, please give some clicks to Sam.  

3.  The team at the Diabetes Hands Foundation is gearing up for this year's Big Blue Test, and for 2012, there are five $10K grants up for grabs for US based 501c3 organizations, and $25K to two overseas non-profits.  For more details, check out this press release, and get ready to test, exercise, and test again to show the impact of exercise come October!

4.  Last weekend, Chris and I were lucky to catch a screening of DxONE at the Rhode Island International Film Festival (RIIFF), and it was inspiring to see diabetes represented on the big screen (and not in a way that referenced anyone named "Shelby.")  Dan Masucci and his son Nick have created a film showing diabetes as a disease that, despite being so invisible, penetrates every moment of every day, and deserves constant research and funding towards that elusive cure.  If you're able to catch a screening of this poignant short film, consider yourself lucky - it shook me right down to my non-functioning islets.

5.  "Yes, he IS crying, isn’t he? You are right. He’s probably hungry. Should I feed him? And if so, where do I put the food? His eyeball? His butt? What kinds of cuts of meat do babies like?"  I wish I wrote this:  Hello Stranger on the Street, Could You Please Tell Me How To Take Care Of My Baby?  Thankfully, someone far cleverer did, and it's one of the funniest things I've stumbled upon on McSweeney's in a while. 

6.  And if you spend too much time on Facebook after 11 pm, you'll see the most bizarre links fly by.  Case-in-point is this one from Faye (who made the Novolog cake pops I covet so much), which features a lovely wedding reception and a what the HELL is that?  (Click through and look in the balcony to see what I mean.  Completely creepytown.  Explanation here, but don't cheat!)

Have an excellent weekend, and try not to get nightmares from that last picture. 

August 16, 2012

Guest Post: You Can Do Whatever You Want, So Long as You Have Health Insurance.

Healthcare, and the debate about its "reform," is a topic I think about a lot, especially as a patient with a chronic illness.  Today, guest writer Sara Willi has offered to share her thoughts on this important debate, painting a personal picture of life with diabetes and the impact it has on her finances ... and her health.

*   *   *
I contacted Kerri last month about the Supreme Court decision to uphold the Patient Protection and Affordable Care Act (aka Obamacare) and she graciously agreed to read some of my thoughts on it. I think it’s one of the most important issues facing this country right now (I’m biased, you’ll see why below) and feel it is important to consider this fall as you head to the polls. While I am not a health care policy/insurance expert, I am an expert on living and dealing with a chronic disease in the U.S. with the current health care system.
 
I was diagnosed with type 1 diabetes at age 10. After that point as I was growing up my parents always said I could be whatever I wanted, as long as I had health insurance. Looking back, I realize they never limited me by my gender – my mother has risen through the ranks in a typically male-dominated career - or by my disease – I had a pretty regular childhood minus the shots and sugar-free candy. In my adult life, you wouldn’t know I’m diabetic until you see the insulin pump tubing trailing from my pocket. I have run half marathons, I have traveled to (and lived in) foreign countries and I even had an unplanned pregnancy which, while totally inadvisable considering my high A1C, resulted in a perfect child (that's a whole other story). I’m very lucky that at this point, nearly 23 years of diabetes hasn't shown itself yet in my eyes, kidneys, heart, or feet.
 
What has limited my life, and now my family’s, is the need to have health insurance. I did need to find a job with insurance after college and did so in Washington, D.C. Then I got married, became pregnant and my husband was tasked with ensuring he provided our health insurance so I could quit my job to be with our son. During our time in D.C. our monthly premiums through his work were more expensive than the rent for our two-bedroom apartment on Capitol Hill. I eventually went back to work, this time taking my son with me as I managed a play room putting in 40+ hours a week to cover our insurance costs. After that became too stressful and I didn’t even have time for doctor’s appointments to use the expensive insurance we had, we decided to move back to the small town that I was from. My husband could keep his job and work from home and I wouldn't have to work, but as we were now paying even more for PPO insurance so I could see doctors in our new town, we moved in with my parents.
 
This year we will pay more than $26,000 in direct health care costs (paid almost entirely for me as my husband and son require only a check-up here and there). Our health insurance premiums are taken out every two weeks pre-tax at $950 for 26 weeks equaling $24,700 this year. I pay $35/month for insulin equaling $420 this year. My out-of-pocket expenses are $1,500 for me individually this year before our PPO insurance kicks in to pay the rest (with my new insulin pump this year and monthly doctors visits, I’m already there). The total is $26,620. I try desperately not to think of what we’d do with that extra money (house, car, college savings), but unfortunately we have no choice.
 
We spent a little time looking into alternatives if we were to go out on our own by getting insurance through a health insurance website. The monthly premiums were still high and the plan that would’ve worked best for us didn’t cover maternity expenses for the first 18 months. We couldn’t take that chance knowing the cost of my 2007 c-section alone would have been $35,000 without insurance. I looked at the Health Insurance Risk Sharing Plan (high risk pool) for my state, but that isn’t a viable option either. I would need to be uninsured for at least 6 months to qualify. This is not a good option for a Type 1 diabetic considering the great cost of prescriptions, labs, doctor’s visits or the random medical emergency (like my 2009 appendectomy that would have cost $22,000 without insurance).
 
As a mother, I constantly worry that my child will develop diabetes, or any other chronic disease. Not that a disease would necessarily limit his life (it hasn't mine), but that he might be limited by the need to have health insurance and it would mean the end to his ability to dream big about his life. I would have to advise him, as my parents did for me, that he can be whoever he wants to be, as long as he has health insurance. Instead, I hope he can make his career decisions based on what he wants to do, not the benefits package. I hope he can live in a country that values the health of all her citizens, no matter how much money they do (or don’t) make. I hope he can live in a world that realizes we are all of us mortal, we will all need health care someday and it shouldn't be a choice to afford medication or to afford life's other basics like food or housing. I hope he can use his hard earned money toward reaching his American dream, instead of spending it on managing a disease.
 
Whatever your opinion on health care reform, I encourage you to take a serious in-depth look at the options the two candidates put forth and take a stand for what you support. Perhaps your situation, unlike mine, has been easy and you don’t think we need health care reform in this country. Perhaps your situation has been similar to or even worse than mine. Either way, chances are if you read Kerri’s blog, you or someone in your life deals with diabetes – a chronic disease that requires constant control at potentially great expense. Who better to inform the decision making process on health care in this country than those who need it most?

*   *   *

What are your thoughts on this important issue, and how it may map out, come November?

August 15, 2012

From Abby: Absolutely Not Medical Advice.

This is NOT medical advice.  Not even close.  But Abby has some opinions that are influenced by her years with type 1 diabetes, her nursing degree, and all the stuff she hears people saying about diabetes, and she wants to share those opinions here.  

*   *   *

Diabetes is confusing. Sometimes you think you have it figured out, and then - BAM - you do the same thing that worked the last five days but today it doesn't work. I believe that 90% of the time, there is a reason for these disturbances.  I've decided to take my educated little brain and put some myths to rest, and spread some pearls of wisdom. I am a Registered Nurse, but I am still learning about diabetes, and everything that comes along with it, every day.  So this is not medical advice.  This isn't written to influence how you take care of yourself or how you should take care of yourself.  Talk to your doctor before you make any changes to your healthcare.  Seriously.

Welcome to Absolutely Not Medical Advice: Diabetes Hearsay. 

Myth #1: Insulin Makes Me Fat, So I Need To Use Less, Goshdarnit.
Here's the science (it's an abridged regular-people version): Insulin helps you metabolize your food, so that your body can use it (carbohydrates to glucose, specifically). The problem comes in when you eat TOO MUCH of these foods, and your body doesn't need so much of them. Where does it get stored? As FAT! We store excess glucose as fat. We can thank our ancestors for this skill. When they lived in times when food was sparse, they needed to store it in their bodies for later use. So, okay sure, you take more insulin, you gain weight - I can see why you'd think the insulin is the culprit. But really it is all those carbohydrates and, ahem, CALORIES, you're consuming that makes you gain weight. You gain weight when your CALORIE INTAKE EXCEEDS your calorie USE. It really is that simple. I dare you to take a look at calories in your food while you're looking at carbs/protein/fiber whatever else you're looking at. I bet you'll be surprised at what's actually in there.

Myth #2: If I'm going for a run right now I should turn off my basal. RIGHT NOW.
No. Please, no. If you can promise me anything today, it's that you will not do this. Here's the skinny: short acting insulin (Humalog (lispro), Novlog (aspart), and Apidra (glulisine)) lasts approximately four hours in your body. This kind of insulin doesn't even start working for about 15 minutes, and there is also a ginormous peak around 30-60 minutes after administering it. So, it stands to reason that, unless you're going for a four-hour run/hike/bike ride/swim/whatever, changing your insulin now will not help, and could make you high later. What you should do, if you are wary of lows, is make a change to your basal 30-60 minutes before you work out. (This gets really complicated based on food, type of exercise, recent boluses, time of day, how often you exercise, what color shirt you're wearing, etc - talk to your doctor about making ANY and ALL changes to your medication regimen.) In general, however, stopping your pump or skipping a meal bolus right before you work out will not ... ahem ... work out well. [Editor's note:  This doesn't even begin to tap into ketones and how important it is to have insulin on tap at all times, so talk to your doc before disconnecting your pump for exercise!]

Please feel free to email me (abby at sixuntilme dot com) with questions or diabetes myths you'd like to see discussed, or if there is something you have a desire to know more about. I'd love to research and answer any questions. I love to learn, and I am on track towards becoming a CDE, so this is really helping me do my future job better. No question is too random, or issue too insignificant, because trust me - someone else out there has the same question or struggle.

*   *   *

August 14, 2012

Blows Me Away.

Sometimes it just blows my hair back ...

Like that commercial for the vibrator.  Because that's a normal thing to advertise on primetime television. 

... how a perfectly normal blood sugar can feel exactly like a miserable hypoglycemic episode.

Shaky, slightly sweaty, and a little dizzy.  But no low to be found.  WTF, diabetes? 

("Episode" always makes me think that lows should be more sit-com than drama, but they never have quite the same laugh track.)

August 13, 2012

Vampire Cannula Redux.

Last week, my blood sugar numbers were great for a day and a half after a site change, but then they went off the rails.  Untouchable 200s that no bolus would bring down and only exercise was able to budge.  Usually, these stubborn highs are the fault of an infusion set issue, and sometimes I am just as stubborn as the highs, refusing to pull the site.

But this time, when I examined the site, I saw the pooling of blood, and figured there was a vampire cannula on tap.  (See also:  No kidding, because there normally isn't blood in the site.)

Suspicions confirmed.

And within an hour of the new site, I was back in range.  Funny how well insulin works, when it's able to get into your body.  ;)

August 10, 2012

Wrong Diabetes Diagnosis.

On Monday, the Wall Street Journal (look at me, linking to a real publication instead of a Strongbad email) had an article about doctors misdiagnosing type 1 diabetes in adults.  I posted a link to the article, called "Wrong Call:  The Trouble Diagnosing Diabetes," on my Facebook page and received several comments from people who went through a similar misdiagnosis.  They have offered to share some of their story here, and I'm hopeful that their words will help someone else in a similar situation.

The Initial Symptoms.
Jessica, diagnosed at age 26, was already familiar with type 1 diabetes.  "My diagnosis story actually begins with my husband, diagnosed with type 1 on his 21st birthday.  Fortunately he was diagnosed correctly and quickly, and we were able to get him all of the help he needed."  She described hitting a wall of thirst and exhaustion that set in when her son was nine months old.  "These symptoms continued for about a week, and mostly only bothered me at night.  During the day, although I was tired, I wasn't going to the bathroom constantly or super thirsty."

Lindsay had a similar experience, just before she turned 27.  "I was just a few weeks sPinging and ponging between proper diagnoses.  hy of my 27th birthday.  I had been sick a long time with weight loss, hair loss, you name it.  I ended up with intense upper GI pain that couldn't be ignored, so my mom took me to the ER where the symptoms were investigated with an ultrasound, blood work, etc.  The doctor came back to report that I had 'viral gastritis, likely due to your increased blood glucose level, which is 277.  Now, because of your age, you'll be considered a type 2.'  Love that one, eh?? My mom and I sat stunned; my dad had JUST been diagnosed with type 2 three weeks before."

Sarah also sang the same symptoms tune:  "The morning of February 22, 2007 I woke up and with diabetes without a doubt in my mind. I had nearly every symptom there was - constant thirst, frequent urination, fatigue. I had the works and I knew it.  I had a yearly physical coming up about three weeks after this and decided to wait until then to bring it up with the doctor. I realize now that this was foolish of me and that I really should have gone in right away!"

The Wrong Diagnosis.
Sarah was heading off to Europe the day after her initial type 2 diagnosis, armed with a bottle of metformin and instructions to see a doctor immediately if she felt at all ill.  "When I returned from Europe and for nearly five months, I had appointments every other week to monitor the progress of my BG readings and to adjust medications that ranged from Metformin to Glypizide to Byetta. By the time my last appointment in July had come around, I'd lost 45 pounds, the Byetta had caused my boss to think I was going to vomit every time I ate (even though he knew the side effects only included nausea, not actual throwing up) and for me to feel even worse than I had the 3 months before I began taking it. I was done. If I had to be a T2 Diabetic on insulin, I would be. But I was done feeling sick; being sick. My doctor offered to write me a referral, in which I quickly took him up on - even providing him with the name of an endocrinologist during that very appointment.  He gave me a prescription for insulin and a low dosage to start me off until I could get in to see the new doctor."

"We were given the name of an endocrinologist, a prescription for Amaryl and a prescription for a blood glucose meter," said Lindsay, recalling her initial diagnosis and treatment.  "We were told that once my blood sugars were under control, the gastric pain would go away.  I remember so clearly the nurse making sure I knew that as a diabetic my 'days wearing open toed shoes were no longer.'  No real information on what diabetes was, no instruction on how to use the meter, no information at all.  We left and I felt totally and completely lost. I was still so sick from the upper GI pain that I was relatively accepting of my fate because I was under the impression it would get better fast."

Jessica, however, had her husband's type 1 tools at home to make a quick check:  "One day, we went to my moms for dinner ... a night I now refer to as my "Last Supper."  It was my favorite meal - pot roast, mashed potatoes, loads of gravy, corn, bread, and Pepsi.  Immediately after dinner, I was going to the bathroom every 15 minutes.  I laughed about it, was a little concerned, but rationalized that I had drank a lot of water and Pepsi that day.  My mom looked at me and said sarcastically, "You should check your blood sugar!"  And it hit me.  My husband wasn't with us that night, but my sister drove me home, and we pulled out the meter:  HI.  'Bullshit,' I thought.  Check again:  HI."  She was off the the ER and sent home with a prescription of metformin, after minimal lab work.

Tipping Point, and Resolution.
That endocrinologist appointment was a true tipping point for Sarah.  "I remember my first [insulin] injection like it was yesterday. It wasn't much, but I remember feeling better within the hour. It was the best I'd felt in months - not only physically but emotionally, too. My fatigue and over all demeanor caused a lot of emotional angst that summer.  About a week later, during our first appointment with the endocrinologist, we [my parents and I] learned that I was a type 1 diabetic. She taught us about insulin to carb ratios, how to calculate them, when to take my injections for food and when to correct a high blood glucose reading, and what the difference was between Lantus and Humolog. She told me what was happening to my body and for the first time in months I understood. I was grateful for that day."

Lindsay also found quick, but bittersweet resolution at the endo's office.  "One week after visiting the ER, I met with my new endocrinologist who would be the first to tell me 'Um, no.  The doctors at the ER were shockingly and sadly mistaken.  Your A1c was 15.3 and you are, by every definition a classic case of a type 1, soon-to-be insulin dependent diabetic.  Your lab results are more than clear in that.'  I started SOBBING.  I had just accepted my fate as a type 2 who would have to watch my diet, maybe exercise some more and take medication.  I could handle that.  But shots???  UGH - no freaking way.  Looking back on it now, I'm baffled at how it was SO important to make sure I knew I shouldn't ever get pedicures or wear sandals again, but the meter?  The safe blood glucose ranges?  Ways to treat highs & lows?  Nah.  That wasn't important, I guess."

"I went to an endocrinologist.  I was begging for answers, telling her my story and asked if she thought I would ever be able to stop taking insulin," said Jessica, talking about her first visit to an endo. "She said, 'You know that you have Type 1, right?'  I cried, but more from relief that I finally had an answer.  My latest results had also revealed a hyperthyroid problem and she began to treat me for both.  I understand that I was extremely overweight and that's a red flag for a T2 diagnosis.  But it is terrifying to think about what would have happened to me had my husband not had a stockpile of insulin, test strips and needles for me to use.  We trust our doctors - and when we are diagnosed we do what they tell us to because we are scared, they know more than us at that point, and we want to feel better."

I only know what I know:  diagnosed as a kid with type 1 diabetes, never going through the pain and heartache of a misdiagnosis.  But after reading the WSJ article, and the stories from these women here, it breaks my heart to think of someone dealing with diabetes, but not finding answers, or relief.  All three women were misdiagnosed with type 2 diabetes and given oral medication, when they actually had type 1 diabetes, and needed insulin.

Jessica sums it up for me with this:  "I knew of only one girl with T1 when I was growing up.  I've met a few more as an adult.  What scares the hell out of me is the number of adult T1's I've met who are diagnosed in adulthood.  It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults."

August 09, 2012

High Flying.

I hate running.  So much that I have a Spotify playlist dedicated to my disdain for it.  (The songs are quality, though.  I posted a link on Twitter to the disastrous tunes that keep me upright for 45 minutes.)  But it's a new part of my daily workout regimen, and it's extremely effective at dropping my blood sugar like a rock.  I see my numbers tumble from 180 mg/dL to 80 mg/dL regularly during workouts (which is prompting me to start experimenting with temporary basal rates and different kinds of foods to help keep from plummeting - oh the math!). 

So yeah.  It's a new kind of exercise that's taxing my body in a new, positive way.

But giving running a go when my blood sugar is high?  Holy crap, that's a rotten way to start a workout.

There's something about a high blood sugar that makes my body feel weighted down, like I'm wearing a chain mail suit (not one of those "Forward this or a rabid snail will imbed itself in your ear!" kinds of chain mail - I mean the legit, medieval kind).  Or that I'm exercising with weighted boots on.  Even when ketones aren't present (and I always check for them if I'm over 240 and heading to the gym), high blood sugars make slogging through a workout akin to traipsing through waist-high snow drifts.  It's crappy.

What amazes me is when I feel strongest while working out.  Every time I feel powerful, or strong, or jacked up on exercise endorphins, I usually click on my Dexcom and see a blood sugar around 100 mg/dL.  It's amazing how good I feel when my blood sugar is completely in range.  (My favorite workout number is 90 mg/dL, but the trouble is, it doesn't last very long in that range.) 

"Is this what normal feels like, all the time, for you?"  I've asked Chris, trying to explain how awesome a workout feels for those moments when I'm hovering around 100 mg/dL.  He can't answer, because he has no idea what steep blood sugar fluctuations feel like.

NO WAY did I go on this ride. I stood on the ground and photographed it from the safety of my fear bubble.

I don't often have envy for those who produce their own insulin, but I have be honest:  Sometimes I'm downright jealous of people who don't know what it's like to fly so high while working out.  I'd love to know how fast, and how far, I could go with 90 mg/dL as my norm.

But those brief moments of envy pass quickly, as I work harder to prove that I can go faster and further, fueled by determination ... even in a chain mail suit.

August 08, 2012

Support for the Support Team.

I feel like, as the person in my family who has diabetes, that I have access to a lot of support.  But I wish there was more support for my support team, like my mom, husband, and daughter. This month's video on Insulivin' is about support for those who support us, the PWDs.

It's not a soloist journey; we're a big choir. 

(Beware of the impromptu ode to iced coffee after the credits.)

August 07, 2012

Glucolift: Worth Toting Around.

At the AADE conference in Indianapolis last week (more on that later), my left shoulder basically became dislocated due to the constant drag of my gigantic travel purse.  (It's a camera bag/toddler bag/diabetes bag/purse.  Which means that I could host a family of Sylvanian Family rabbits in there, and all of their accessories.)  This bag carried everything from my camera and iPad to my VerioIQ meter and stash of glucose tabs.

I love glucose tabs.  But not because they taste good.  Nope.  I love them because they are essentially indestructible.  They are the cockroaches of hypoglycemia treatment.  They resist the temptation of temperature, never melting in the heat and never freezing in the cold.  A nuclear blast could come rolling by and these suckers would remain potent.  As previously stated, if there were Diabetes Hunger Games, glucose tabs would be my district's tributes.

Trouble is, they usually taste like crap.  Which is why, this time, my massive bag at AADE was playing host to Glucolift glucose tabs.

I met Chris Angell, founder, fellow person with diabetes, and creator of Glucolift glucose tabs, a few weeks ago at the Children with Diabetes' "Friends for Life" conference.  He had a booth in the expo hall, which was co-manned by his father, so it was hard not to like them both immediately.  After some discussion by email, Chris offered to ship some samples to try out.

"I'll send you some tablets, but you have to promise to wait for a bona-fide low," he said. 

"Sure thing," I replied.

True to my word, I downed my first Glucolift tabs during a workout at the gym.  Being completely honest, I choked them down as quickly as I could without caring about how they tasted.  I cared about how they worked.  (And they worked like every other glucose tab I've tried - fast.)

But the second time I used them, I was at the edge of 70 mg/dL instead of 40 mg/dL, and I was able to pay attention to what I was doing.  No lie - the cherry glucose tabs are where it's at.  Wildberry doesn't hurt, either.  These Glucolift glucose tabs have a flavor palette that doesn't gross me out, which may not sound like a ringing endorsement, but it is.  After decades with "orange" and "purple," it's a pleasant change to have a flavor that's more than just a color.  (And these tabs don't have any 'genetically modified organisms,' which means they don't have any genetically engineered crops in them.  More info on that in the FAQ.)  While I don't like lows, I do like using a product to treat them that is as natural as possible.

Thanks, Chris, for creating something that does the hypo-fixing job and doesn't taste like garbage. And for letting me post this very flattering photo of us from the AADE conference. 

You can buy Glucolift on Amazon, or through their online store.  This post isn't sponsored by anything or anyone.  Except what's left of my brain.

August 06, 2012

Expectations.

Over the last few years, there have been several company-sponsored events where people involved in diabetes social media are invited and participate in a variety of discussions.  I’ve been having some trouble wrapping my head about the respective expectations at these events, and how to capture my thoughts in a productive way.

I love, love seeing my fellow PWD in the same room, bringing our online connections offline.  I am really grateful that these companies afford some of us the opportunity to sit in the same room and actually talk with one another, or have dinner with one another, or just be in one another’s presence in “real life.”  Needing a test strip and being able to borrow one from across a table is an amazing experience, especially when I spent a lot of time prior to 2005 feeling like I was the only diabetic I knew. 

My expectations at these kinds of gatherings is that these companies are trying to get to know the diabetes online community, and that they also wanted to tap us for ideas, marketing opportunities, and organic PR.  While I do believe that many people in these companies care about us as people, and vice versa, with members of the social media space getting to know the real people behind the companies, I know there is a definitive marketing spin to everything that happens at these meetings.  It’s almost impossible for there not to be, because their job is to manage their franchise.  

I think the people in these rooms are lucky.  Those who are voicing some perspectives from the diabetes community are lucky because they have the opportunity to see one another in person, and can hopefully represent the viewpoints of people with diabetes with respect, integrity, and honesty.  The people working in these companies are lucky because they get to hear real concerns and praise from their actual target market, and they get an in-person feel for a snapshot of this community.  All that collective "luck" goes a long way in furthering the patient's voice being heard by Big Pharma, hopefully contributing to change for the good on all levels.

But the tides are turning.  There has been some real progress, in terms of things like patient assistance programs, etc. that have come as a direct result of these meetings.  And I know that I am personally inspired when I see a company’s culture and compassion, first hand, as a patient with diabetes.  But if companies have the budget for meetings like these, I believe we should be using these meetings to benefit the community as a whole.  If we have travel, lodging, and meals as part of these discussions, I know we can see that money go into community outreach, too.  Or instead.  Diabetes camps, or college scholarships for people with diabetes, or assistance programs for the under-and uninsured would benefit from the same attention that some social media representatives are receiving.  If these pharma/blogger meetings are intended to improve the diabetes community, true advocacy and assistance would go a long, long way in that.  What do we, as a community, want to see happen?  If we don't contribute to the agenda, we are just along for the ride.

I don’t know if companies will continue to host these kinds of meetings, but if they do, I hope the outcomes are tangible. I have appreciated the opportunity to see behind the curtain at some companies, but I am hopeful for a shift.  A change.  Outcomes can be as simple as connecting two PWD who live in the same town or as complex as trying to supply insulin to third world countries, but they need to benefit more than the people sitting in the room. 

These meetings need to be less about pulling back the curtain and more about raising the bar, setting expectations for outcomes that actually make a difference in the lives of people with diabetes. 

No specific reason for this photo, other than the fact that I just liked it.

Visitors since November 7, 2005