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December 31, 2011

What's Next?

I don't do well with resolutions.  I've tried, but they end up being revolving doors of resolution.  The last few years have been a spin cycle of chaos, and I need to whittle things down to a more manageable size.  (Thank you for the quote that's forever in my head, Charlie Kaufman.) 

This year, I only have one goal.  One resolution that touches into everything else - work, health, family, friends, emotional well-being.  It's not a big one, and it doesn't have any lists I can check off or apps I can download to mark my progress.  It's just a feeling.  A general state of being.  My 2012 resolution is to be happy.

Birdy learned this word just this week, and she lets it fly with reckless abandon.  Only it's rarely an exclamation or a question.  Her "happy" always ends with a period, as though it just is. "Happy."  

May 2012 be a year of good health for all of us, emotionally and physically.  And I hope we're all happy, with ourselves, for others, and in general. 

Happy New Year, you guys. xo

December 30, 2011

The Year In Review: 2011.

I like this meme, and apparently I also like this image, because I've used it a bunch of times.  :)I like this meme because it lets me poke around in the archives of the last twelve months, and reminds me of what's been on tap since January 2011.  Here we go: the first lines of a definitive post from each month in 2011.

January: "Over the holidays, my husband and I had the opportunity to join his agent (who happened to be in town) for dinner."

February:  "I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting."

March: "It's been well-documented that my coffee addiction is ... substantial."

April:  "One year ago today, the best little write-off ever was born."

May: "Dear Littler Me, I wish you'd known you weren't alone."

June:  "During the Joslin medalist meeting last week, I didn't say anything."

July:  "Lead by Korey Hood and Stefan Rubin, the Parenting with Type 1 Diabetes session at Friends for Life was aiming to touch upon the different challenges of being a parent with type 1 diabetes, instead of the concentration on parenting a child with type 1 diabetes that Children With Diabetes was once known for."

August: "A few years ago, I was talking with (or was I actually hanging out with?) Faye from SugarBump."

September:  "What I've learned in the last twenty-five years with type 1 diabetes:"

October:  "I grabbed the Dexcom receiver from my purse and gave the button a quick click while I was standing in line for coffee, checking the graph and noticing the single "What UP!" arrow pointing my blood sugar up from 146 mg/dL."

November:  "BEEEEEEEEEEEEP!"

December: "Rounding out "Awkward Week," my mother reminds me of this story every time we go out to dinner."

Need a meme to help you recap 2011? Grab this one and run with it!

December 29, 2011

Pricey Stuff.

Back when I was a young bird with type 1 diabetes, insulin cost about $70 dollars per bottle.  (And I had to walk uphill both ways to the endocrinologist's office.)  I had no concept of this cost, or how it played into my family's finances, at the time.  I would just open the fridge door, grab the bottle, uncap the orange top to a 1cc syringe, and take the units my mom would yell to me from the kitchen sink.

"Two. Two of Regular should do it.  Rotate to your right arm this time, okay?"

"Okay!"  (And then I'd proceed to jab it into my left arm because I'm right-handed and also stubborn.)

Now, twenty-five years later, insulin has taken a bit of a price hike.  I just ordered a three month supply of Humalog from Medco and the total for the insulin came to six hundred and ninety-seven dollars.  For six bottles of Humalog that will be all gobbled up by early March.  (And thanks to a high, but manageable-on-paper deductible, we're responsible for the full cost this round.)  Almost seven hundred dollars worth of insulin.

We're lucky that we're able to pay for that cost without panicking, but knowing what these bottles cost without the assistance of insurance makes me look at everything through a diabetes lens.  When three days are up on my insulin pump site, I am very aware of the twenty-odd units left in my pump cartridge and in the tubing.  And when I refill the pump, I make sure I only put what i think I'll need into the reservoir, instead of automatically filling it to the 185u mark.  (Which is what I did before, but now I'm very aware.)  And when I prime the 43 inch tubing, I have this mental image of siphoning it out like I'm draining gas from a Jeep Wrangler when I'm done with the site.  (Ew.)

The other day, my insulin order arrived.  The UPS delivery guy rang the doorbell, and I greeted him with a messy ponytail.

"I have a delivery for you, but I didn't want to leave it outside in the cold.  It's medication," he said, handing me that familiar "giant pillow" that protects the insulin vials during shipping.

"Thank you!  I appreciate you taking good care of ... of the drugs," I said, realizing I wasn't going anywhere productive with my statement.

"Yes, the drugs."  He smiled as I signed the electronic receipt.  "I'm curious what comes delivered in a giant puffy pillow."

"Insulin.  There are some bottles of insulin in there."  I handed him back the signature pad.  "Thanks for bringing ... the drugs.  That makes you sort of my dealer."

He tucked the signature pad back into his pocket and, without missing a beat:  "No problem.  Call us when you're ready for your next fix.  Happy holidays, miss."

Not cheap, this stuff.

Diabetes is an expensive disease.  And the things we use to keep ourselves alive are pricey little items, from the vials of insulin to the little plastic test strips we shove into our meters.  In the last few years, I've had the benefit of forgetting how expensive managing this condition can be, in part thanks to sponsorship agreements and excellent health insurance, but I have had my share of hits to the wallet, and many, many reminders of how lucky many of us are.  (Watch the "Life for a Child" documentary when you're feeling a little financially strapped and your perspective will shift in a moment's notice.)

I went back into the house and unpacked the insulin that was just delivered by my UPS drug lord.  And as the bottles lined up neatly in the butter compartment of the fridge, I was thankful.  I'm thankful that I can afford this necessary medication, but I remain hyper-aware of the costs of both having and not having access to it.  A fridge full of insulin makes me a very, very lucky girl.

(With the holiday season upon us, now is a good time to think about others and help, if you can.  To make a donation to the Life for a Child efforts, please click here.)

December 28, 2011

From Abby: Closed Loop Trial (Part II).

Hey, this picture again?  Yes.Hi again!  Thanks for checking in with Abby's experience with the diabetes closed-loop study.  Here's part two of Abby's feedback on the closed-loop study, including her questions and concerns about what happens next:

*   *   *

The great thing about this study, and the people running it, is that they are fully aware of the human component. The engineer I spoke with has a 12-year-old son with type 1, so he “gets” how this system needs to function, and under what circumstances. The nurse practitioner who runs the study also has type 1, and so did the night nurse) who watched me puke for two hours). These people know what its like, and why we need this system to function and help us.

While I'm not sure how much I can share publicly about what the engineer of this computer program told me, he did fill me in on where he sees this whole shindig ending up.  His plan is to develop an iPhone application that would be controlling everything.  The OmniPods would be replaced by a tubed pump (one that can hold glucagon and insulin in a very small pump; they have a contract with a company) and we, as patients, would wear two infusion sites about two inches apart, but connected to the same pump.

While this might seem like an excessive amount of stuff to wear, i don't actually think it would be, considering how tiny infusion sets have become. Also, he's really pushing to use the Navigator CGM system because of it's accuracy. Unfortunately that technology is no longer being made so he's trying to figure out a way for another company to make the same system - aka "reverse engineer" it. So patients would be wearing a Navigator (he's pushing for a smaller transmitter, since the current Navigator one is huge) a pump, and two infusion sets. The other problem is the lack of stability glucagon shows after 24 hours. So again, they're working with a company to develop a glucagon that is stable for three days at room temperature.

Assuming they get this pump generated, glucagon stabilized, and Navigators back on the market, the plan is to have an iPhone app that controls all three aspects. The algorithm would figure your body and habits out over the first few days, and then use a 10-day model to dose your insulin and glucagon. What this means is that your basals for the last ten days might not be the same as the next ten days, but the computer learns from what it's seen. The really coolest part to me, though, is how you bolus for meals.  You would literally push a button that says either small meal, medium, or large meal. If you're eating less than 15g, for example, you don't bolus at all and let your computer react to your blood sugar. 

At first I thought this was totally insane, but he said that during the trials they're finding this is actually an okay way to do it, and that your blood sugars won't skyrocket because you're being controlled so tightly. Also, the system learns what you consider a "medium" meal. So I may eat meal that is actually 60 grams of carb and guess it at 45 grams, so I call that medium - while you would see the same meal, guess it at 90g, and call it large. It won't matter after a few days, because the computer will just know what you consider small medium or large - as long as you're consistent with your guessing. How awesome is that!!

This team will build into this program things like sick days - the computer will adjust your basal rates if it is seeing consistent lows or highs for three hours. Also, it would shut off insulin for a while if you're dropping from something like exercise, but since it wouldn't be for over three hours it wouldn't totally change your basal pattern.

Abby, all hooked up to the system.

I have questions and concerns about this, as I'm sure you do. First of all this whole system, when available to us, will be SO expensive. Heck, I don't even have an iPhone now.  [Editor's note:  Neither do I.]  Also, this is so complicated, you'd need to be in very close contact with your medical team. A large part of the population can't handle insulin pump therapy because of it's complexity - so how will people be able to grasp this concept? I suppose with time it'll become more readily covered by insurance, and easier to understand. I'm excited about the future of technology, especially after seeing it at this stage.

It may not seem like it, but I had such a positive experience during this trial, even though it was cut short by vomit. There are people working very hard to help those of us with diabetes. They know what we're living with, and they see a future with an easier-to-control system.  My hope for “something better” has increased after this experience.  If we aren't able to be biologically cured, we will at least have a more efficient way to control this disease. 

I think that future is coming soon.
*   *   *
I want to thank Abby again for sharing her experience at MGH with us, and the photos and feedback have been amazing.  I'd love to hear from anyone else who has participated in a closed-loop trial - if you want to share your experiences, please email Abby directly at abby (at) sixuntilme (dot) com. 

December 27, 2011

From Abby: Closed Loop Trial (Part I).

This is all Abby's pee.  No, I'm kidding.  It's Siah's pee.Okay, so the birthday girl (HAPPY YESTERDAY BIRTHDAY, ABBY!) was part of a clinical trial last week that involved the closed loop system, and she both Tweeted her experience and wrote it in two parts here on SUM.  I think this trial is fascinating, and Abby's first-hand experience was inspiring.  Here's part one of her feedback:

*   *   *

(During the summer of 2009 at CBC, I heard about a Closed Loop Trial in Boston.  For one reason or another none of us on staff were able to participate at the time.  I personally couldn't because I was unable to commit the time to coming to Boston, but I stayed in touch with the trial coordinator and this fall, she contacted me with some openings in the trial. Here is the extra-long story.)

There are a lot of requirements that factor in to being approved as a participant in this closed-loop-trial.  For example, you can’t make any of your own insulin (you need a negative c-peptide blood test) and you also have to have an A1C under 9%. At the first screening visit, I had to fast from 10 pm the night before, then I had to deal with a ton of paperwork and a physical examination before they eventually gave me a Boost milkshake (that I wasn’t allowed to bolus for).  The point of this was to draw blood 90 minutes later to screen for c-peptide. (Lucky me: I make zero of my own insulin.) So by the time they drew blood, I was starving and my blood sugar was pushing 300 mg/dL. It was a rough morning but worth it, because I ended up being accepted into the trial!

The next step took place about a month later when I had to select my food for the three days I’d be participating in the trial. They base your carb counts on your weight, and I had to eat between 85 and 120 grams of carbs at every meal, but the trick was that I would only be eating three times a day (will explain this more later). Choosing food was fun, but hard. That's a LOT of carbs for me, I generally don't eat more than 100g carbs all day, let alone in one sitting, three times a day.  There were tons of good food choices, like pizza, and lasagna, and sandwiches. I was excited to stuff my face with delicious fatty food in the name of science.

Finally, it was trial time. The day before the trial started, I had to go in for a quick visit to have the continuous glucose sensors placed.  I wore two Freestyle Navigators (one “active” for the computer program and one “dummied up” in case something happened to the active one.  Navigator sensors take 10 hours to "warm up," so having two saved time in case there was an error) and one Dexcom for control purposes. All three sensors went on my belly, which was totally weird since I NEVER wear any diabetes gear there, but for research purposes they have to do everything in a uniform fashion. They also drew outlines of where the OmniPods would be placed the next day. Once the sensors were on, I went back home to get used to sleeping as a robot.

Abby the Robot
What won't this girl do for science?

The day of the trial, I couldn’t sleep. I woke up around 6:00 am, even though I didn't need to leave my apartment until 9:00 am. Whoops.  I arrived (after taking the packed T with a giant backpack and a purse and a pillow in sweats while everyone else on the train was in fancy-shmancy work clothes - oh hey awkward) and was put into my hospital room for the weekend. Everyone who works on this research floor is SO NICE. I can't even explain how caring and wonderful these nurses and personnel are. Amazing.

After a quick physical and orientation to the floor, things were off and running. I had an IV placed that was hooked up to a machine called a GlucoScout which checks your blood sugar through this weird tubing and machine and then puts it back into your vein, so you don't lose a lot of blood and don't have to have your finger pricked all the time. It was great being able to just look at a machine and see what I was every 15 minutes and really trust the number. After this IV was placed, I ate lunch and manually bolused my insulin for the last time for the duration of the trial. At this point, the GlucoScout was checking me but I was reacting to everything, meaning they had no control over my insulin yet. I bolused for lunch, and watched my blood sugars from there using the Scout, not my meter - the nurses just recorded what I did. I went from 141mg/dL to somewhere around 180mg/dL and came back down, even though I ate 97g of carbs and took 12.6 units which is totally ridiculous amount of insulin (for me to be taking at one time). Things worked out fine. 

Next, two Omnipods were placed on my abdomen (using up every last available spot of skin, I looked ridiculous and felt even more ridiculous). One Omnipod had glucagon in it and the other contained Humalog. (Fun fact: OmniPods don't hurt nearly as much as you'd think they would considering that very loud click they make when the needle goes in.)

At 2:50 pm, I took my personal insulin pump off, and at 3:00 pm the whole closed loop system was turned on. At first, it wasn't totally weird, because I don't pay attention to my pump between meal times, but it was super cool to see this computer reacting to the Navigator number and bolusing me every five minutes.

The Glucoscout
The Glucoscout

The closed-loop system is totally complicated, and even after the engineer came in and completely explained it to me for over an hour, I still only have the general gist of how it works (which is fine since I'm not an engineer nor do I want to be).  Basically, the computer relies on the Navigator CGM, and gives you insulin or glucagon units based on the number. It keeps track of how much insulin you have in your body, gives you a 45% pre-meal bolus when it knows you're eating (which for the trial was at 8 am, 12 pm, and 6 pm, for uniformity’s sake), then reacts to your blood sugar from there.

So for example, I got 3.2u of Humalog right before I ate dinner, and then as my blood sugar rose after my meal, I got between 0.1u an 0.3u (depending on the result), every five minutes.  The system administered a basal and correction dose at the same time.  This pre-meal bolus was why I had to eat so many carbs, to keep the environment controlled. The researchers realize this isn't a “real life” scenario, but they aren't at the point of testing real life yet. Also, if you're below 120mg/dL you get a small amount of glucagon (I think the most I got was 2u at once, when my blood sugar was somewhere around 74mg/dL) but it also gives you insulin because you need basal.

The whole thing is mind-boggling and I'm glad it makes sense to the doctors and engineers.

I had pizza for dinner, with a salad, an apple, and some milk. It was really tough to eat all of that food, but it was so darned delicious (which helped). My blood sugars rose steadily, I peaked at 217 mg/dL around 9 pm, but then came back down. Apparently it came down too much, because while I was sleeping, I started receiving regular doses of glucagon from the system. I wasn't ever low, never had any hypo symptoms, but I was hovering in the 80s and 90s. This is when the trouble started.

In addition to the fifteen minute GlucoScout checks, the nurses drew a little bit of blood every 30 minutes while I was sleeping to check the glucose in the "gold standard" machine, as well as keeping some fluid for testing after (insulin, glucagon, and c-peptide levels, I think), so I wasn't sleeping well to begin with. Then around 3 am, I woke up feeling really nauseous and like I was going to pass out - that strange feeling where you stop hearing and your body gets really flushed. I told the nurse and he helped by turning the heat down and giving me a cold cloth and some diet ginger ale. I was ok for a while, but from 4 am to 6 am I was (to spare you gruesome details) vomiting and not sleeping. This immediately disqualified me from the study, which was a HUGE bummer. (The first time I vomited they took all of the pumps and sensors off me and I reconnected my own pump, but we kept the GlucoScout on so they could monitor me).  By 6:45 am I felt much better and ended up falling asleep until around 8 am.

The whole time I was there they were checking my ketones, and I never spilled any. When I woke up in the morning I was 89 mg/dL and I ate a piece of toast. After that, the nurse checked again and I had large ketones with a blood sugar of 119 mg/dL. The whole thing was just bizarre. I'm sure I had ketones from dehydration and vomiting but it's still disconcerting to have ketones with a perfectly fine blood glucose and not even feeling sick.  I drank my weight in ginger ale (diet and regular, so I could take more insulin to clear the ketones) and by 10:30 am my ketones were gone and my blood sugar was 178 mg/dL.

So the moral of my clinical trial story is that even though the researchers only got 12 hours of data from me, they saw that someone could be very sensitive to glucagon, even in small doses (I received 15 units over three hours total) which tells them that maybe a glucagon pump isn't for everyone, or maybe a more conservative dosing would be required.
*   *   *

Part two of Abby's feedback will be posted in a little bit.  :)  But for now, I just want to thank Abby for doing this, and for sharing her experiences with us.  What you did helped move us forward, Abby.  You rock.

December 26, 2011

Vlog: Traveling with Diabetes.

Sometimes the iMovie little function things are too good to pass up, like the effect that lets you track travel as if you're Indiana Jones.  Which is what prompted me to do my last Animas vlog for 2011 on diabetes and travel.  (The last few months have been a little travel-heavy, which I'm glad is over for a few weeks, and I'm looking forward to being a complete homebody while Bird-watching.)

December 24, 2011

Happy Holidays!!

Nothing says "holidays" like a teeny BirdBear.  In a plastic house.  Like you do.

'Tis the season for watching Birdy play with her Christmas treats (we got her a play kitchen .... good thing she can't read my blog yet) and for spending time with friends and family.

Happy holidays and much love from the Sparlings!!

December 23, 2011

Guest Post: Diabetes For Christmas.

I wanted to share this guest post on this precise day because exactly five years ago, Lindsay joined the diabetes community as a person with type 1 diabetes.  She's sharing her diagnosis story today, and marking five years as a diabetes badass.  (Also, she's married to a "shit hot sailor" [her words], and I think that's awesome.  Lindsay and I met a few months ago in San Diego, and she's an incredibly smart and passionate part of the diabetes community.  I'm proud to host her words today!

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December 23, 2006

Lindsay ... whoops, I mean "Linds."  :)After moving to Puerto Rico with the Navy in September 2006, December came, and it was time for my favorite yearly doctor appointment (joy). The gynecologist insisted that I have complete blood work just to make sure everything was okay (how did he know?). I went to Clinica Las Americas Guaynabo for my appointment. One week later I received a phone call from the lab that my results came back abnormal and I should try to get to my PCM as soon as possible. They refused to send the results to my doctor (down the hall); I had to physically pick them up and hand deliver them to her, when I could get in.

I went the same day to pick up my results, and sat in the car looking at them. Right away, I noticed the low and high markers that were out of clinical range. The glucose was 399 mg/dL, with a clinical range of 70-110, and the glucose in my urine registered 4+.

I went home, called my best friend Michelle, a nurse, and told her. She hesitated and said “Linds, you need to go to the doctor right away, that’s really high, and might mean that you have diabetes.” I was able to get an appointment on December 22nd to see my PCM, who said, “You might have type 1 diabetes, I’m going to send you over to the lab to redo the blood work and we’ll see what it says."  She put a rush on it. The result was 256 mg/dL, not quite 399 mg/dL (go pancreas go!), but still too high, so she said, “You have to go to the hospital and get insulin, we can’t help you here."

I thought, “Insulin? Puerto Rican hospital?”  Uh oh.

I was referred to Ashford Presbyterian Community Hospital in San Juan. I went home from the clinic and called Seth, and said, “We’re supposed to go to the hospital, because the clinic can’t handle my case, and this is the only hospital that will accept our insurance.” At this point, the importance of this trip was greatly misunderstood, and Seth happened to be getting off work early that day so his command could have their holiday celebration. I decided to go with, have lunch, and then we were going to go to the hospital (which I laugh about now). After the celebration, we left for the hospital with printed directions in hand, and whoa, with traffic, it took us quite a while to get there. When I saw the hospital, and after we finally found parking in this cramped and congested touristy area, I grew uncomfortable. We went to the ER, filled out insurance paperwork, gave them my PCM referral, and they brought me right back. Upon initial check in, they tested my blood glucose and it was 389 mg/dL, he said, “we’re going to have to admit you and get your blood glucose down into a safe range.”

There were no open beds in the ER, so they put me in the very back corner on a gurney, next to another patient’s day old food tray. It was dark and scary. I got up to go to the bathroom, and the bathroom floor was covered in urine, the soap dispenser was broken, there were no towels. I came out of the bathroom and there sat 10 or so staff members sitting at the desk with their feet up, chatting.

I was immediately hooked up to saline, and they came to inject insulin into my arm…right into my muscle (no subcutaneous injections here!). Every hour they would come and draw blood from my bony small wrists (no IV, just repeated digging around in veins in my wrist), and check my blood sugar. It was starting to drop. Two technicians came by to perform an EKG to check my heart, but they couldn’t figure out how to work the machine. They kept laughing and saying “You have to be smarter than the EKG machine.” At one point, the ER doctor came by and I asked, "Do I have type 1 diabetes?” She nodded, said "Yes," and then just walked away. At this point, neither Seth nor I really understood what was going on, nobody explained anything to us, and were both so overwhelmed that we sat and cried together. I told Seth I was scared, he told me that he would take care of me and protect me (which he has done 1,000,000%). 

When my glucose was in a safer range, the doctor gave me a prescription for insulin, and referral to an internist whom I could call on Monday (this was Friday) and make an appointment with. I asked where the pharmacy was, she said the hospital pharmacy was closed but there was a Walgreen’s up the street. After eight hours in the ER, I signed the discharge papers, and off we went at 12:00 am.

Trying to find Walgreen’s in the middle of a very popular tourist area, on a Friday night was interesting and apparently this is peak time for filling prescriptions. It took a while, so we walked around, waited, and I called my mom to update her, and then they finally called our name. After that entire wait, the pharmacist couldn’t get our insurance to go through, so the bill was a couple hundred dollars.

Again, completely misunderstanding the severity of this situation, we said, "Forget it; we’ll go to our primary care clinic in the morning which has a pharmacy and get it there." We did purchase a glucose meter to test blood sugar (this was never explained to us), although neither of us knew what any of the numbers meant or when we should actually use it. On the way home from this overwhelming day, we got stuck in rush hour traffic at 1:00 am in the morning, which gave me a good opportunity to call my best friend Michelle again. I told her everything, and asked, “How do I give myself an injection?” She was totally flabbergasted that nobody took the time to show me how to give myself a subcutaneous injection.  She was crying, telling me that she wished she was there with me, and to call anytime day or night.

Once we got home, we tried to decompress by playing with our new golden retriever puppy Lucy, who’d been alone that day, more than she’d ever been in her short life. The next morning, we woke bright and early and went to the primary care clinic, prescription in hand. The pharmacist filled the prescription, and we talked with her briefly about how we received no information or instruction on type 1 diabetes at the hospital, so she told us to hang on while she quickly ran next door to the clinic and got me in to see another PCM who could help me.

Her name was Dr. Roselyn Martinez-Olivieri, and I will never forget her. She gave Seth and I the most important (you know, life-saving) information, when to test blood sugar, how to inject insulin, and started me on an insulin regimen. This was December 23rd, and the clinic closed early that day, at 3:00 p.m. for the Christmas holiday, so she gave me her cell phone number (mind you it was a “movie star” cell phone which rarely worked where she lived in the jungle in PR), and for the next three days, I called her regularly with updates, numbers, etc, and she told me how to proceed. Seth and I had finally received some decent information, and had, so we headed home, to try and enjoy our first Christmas in Puerto Rico, with a new disease (Merry effing Christmas!).

Several hours later, we went to get some insulin to inject (thanks to Seth for giving me my first injections, I couldn’t do it myself), and much to our surprise (although no surprise now), the pharmacist had given us insulin two years past the expiration date.  [Editor's note:  !!!]  Again, Seth and I set out to find some insulin for the third time, and eventually found an ER (the 3rd hospital we went to) doctor that wrote me a new script and we proceeded to the hospital pharmacy. They wouldn’t fill it because I’d already had one vial filled that same day (and so begins the insurance shenanigans that accompany type 1 diabetes) ... so we fought with insurance to explain the necessity, and that it wasn’t our fault the second pharmacy gave me two year expired insulin and is closed for the holidays ... and on and on. Finally, insurance gave in and filled the prescription.  

So we headed home with fresh, unexpired insulin to start our new life together. A life that in most ways, replaced the life I had been living for 25 years up until that point.  Looking back now, you could say that this really was the worst Pap smear ever; I went in for one test, and I came out with type 1 diabetes!

*   *   *

Lindsay's bio (in her own words, because I'm not changing a write-up that made me smile this much):  My name is Lindsay, but please call me Linds.  Born and raised in West Des Moines, Iowa and I miss it terribly.  Very happily married for almost 9 years to a shit hot sailor and we’re currently living in San Diego, CA with our Golden Retriever Lucy and Kitten Izzy.  I’m 30 years old.  Diagnosed with type 1 diabetes at age 25.  Started TOAST (Type One Adult Support Tidewater) at the Tidewater Chapter of JDRF.  Currently, the finance chair for DiaBuddies, a one on one mentor/mentee program here in San Diego.  I’m also a mentor with the program.  I’m the Volunteer Outreach Chair for the San Diego Chapter of JDRF, and an active volunteer.  Have walked in every single JDRF walk since diagnosis and raised over $16,000.  Currently employed as a Financial Analyst at Dexcom.  This year I was one of three corporate JDRF Walk chairs at Dexcom and helped raise over $41,000 dollars for the walk this year.  

I have a lot of hope, and really believe I was meant to have type 1 diabetes (after all, I was named after the Bionic Woman).

HAPPY DIAVERSARY, LINDS!!!

December 22, 2011

Revisiting: The Guy With the Heart Pin.

Rounding out "Awkward Week," my mother reminds me of this story every time we go out to dinner.  And it still makes my face completely red.  :)

*   *   *
OMG I SAID HEART!!!!(This has nothing to do with diabetes, but I had to tell this story at a dinner a few days ago and it made me blush all over again.)

When I was in college, I met my mother for dinner at a town halfway between her office and my dorm.  We decided on an Italian chain restaurant and asked to be put in a corner booth.  

"We're kind of loud," my mom said.

So we settled into our table and ordered our food from the waiter, who was wearing a white button down shirt, a red vest, and a black apron.  (And pants.  Don't get all crazy on me.)  After our waiter walked away to place our order with the kitchen, my mother noticed that a bus boy, clearing tables, was wearing a bright red  heart pin on his collar.

"Mom, do you know what that pin means?"

I always notice pins, ribbons, and other awareness jewelry. 

"No.  Our waiter didn't have one.  Ask him, he's right over there."

So I leaned across our table a bit and said, pretty loudly:  "Excuse me?  Why do you have that heart on?"

The tables closest to us stopped chattering and turned to stare, a shared incredulous look on their faces.  But I had no idea what was wrong.  So I cleared my throat and tried again, only louder this time.

"I'm sorry - excuse me?  Why do you have a heart on?"

The busboy stopped dead in his tracks and a bright red blush took over his cheeks.  "Um, what?"

(Oh.  My.  God.  What did I just say?!)

"No, no - oh my God.  I said a heart.  Like the heart pin on your shirt.  The heart.  Not hard.  No, no ..."  I'm crying, laughing, and trying to forget that the rest of the dining room heard something decidedly less appropriate than "heart on."  He shuffled over, about to burst into flames.

"Um, I'm wearing this pin because I made a donation from my check to the Heart Association and they gave me a pin to wear on my uniform to show what I did and okay?  That's why I have a heart on.  A heart PIN on."  The words came out of him in one steady stream, like a firehose.

"I am so sorry!!!"  I buried my face in my hands, laughing.  My mother was almost out of her chair, cackling, "You're asking him about a heart, not his manhood!  Not his manhood!"

The dining room errupted into laughter, old ladies dabbing tears from their eyes. 

The busboy shuffled off to call his therapist. 

And dinner arrived shortly thereafter, with a seven waiter escort because they wanted to see the perverted patron who accosted the busboy.  I could barely whisper a word, I was so embarrassed.

"I said HEART." 

*   *   *

Originally published here:  The Guy With the Heart Pin.

December 21, 2011

Revisiting: Surprising Gym Results.

Blog hiatus'ing still, and I remain grateful that my current gym doesn't talk to me this way.

*   *   *

I like my gym.  It is small, tidy, and there's never a wait for the machines.   Chris and I go there every weeknight for about an hour.  My workout varies from resistance training, circuits, and sometimes just some plain old cardio.

Last night, I did a cardio circuit that involved 10 minutes on the elliptical machine, 10 minutes on the treadmill, 3 minutes jumping rope, and then another 10 on the stationary bike.  (Thirty-three minutes.  Larry Bird, baby.)  After I was done on the bike, the machine beeeeped! and flashed a message of completion which took me by such surprise that I yelped.

Slut!!

Excuse me? 

Apparently the machine was programmed in the wrong language, because as it cycled through the results, it offered me my snitt fart count, as well.

Snitt Fart workout!

I do not know what language this is.  All I know is that it surprised the hell out me.  And I ended up with an impromptu ab workout due to uncontrollable laughter.

*   *   *

Originally published here:  Surprising Gym Results.

December 20, 2011

Revisiting: It's In the Fridge.

I have left curling irons in many countries.  It keeps happening, and I don't know why.

*   *   *

I have a boatload of photos to upload from the Roche Diabetes Blogger Summit, but I'm currently at the BlogHer conference in Chicago and the bags under my eyes are hollering for SLEEP.  Photos next week!

However, since Ms. Rachel has already outed me on my Walgreen's purchase, I figured I should just tell this story and get it over with before someone else makes fun of me.  (Ahem, Scott Johnson.)

So this morning on the bus going from the hotel in Indianapolis to the Roche headquarters, I was sitting next to Scott.  And we're talking and then all of a sudden ...

"Oh my God!  Oh shit, I left the curling iron in my room!"

We'd already checked out of our suites and our luggage was waiting in the foyer of the lobby for our return.

"I have the number for the hotel - can you just call them up?"  Scott rummaged in his wicked cool Cozmo bag for the hotel reservation print out.  

"Yeah.  But, um, I'm embarrassed."  Blushing and realizing how goofy this sounds, "My curling iron is in the fridge."

Scott laughed at me, unsure.  "The fridge?"

"It was hot after I used it so I put it in the fridge to cool it down so I could pack it in my suitcase.  And I forgot to grab it."  I tried to make this sound like a normal thing to do.

Scott was laughing at me and could barely speak.  "Oh, I can't wait to hear this phone call."

I dialed the number and did my best to be discreet on the crowded bus.

"Hello?"

"Hi, I just checked out and I realized I left my curling iron in my suite.  Is it possible for someone to grab it and stick it in my suitcase?"

"Hi, yes we can do that for you.  What is your room number?"

"Nine, sixty-three."

"And where is the curling iron?"  I could hear her typing as she spoke.

"Ha.  Well, it's in the fridge."

Her typing stopped.  "Excuse me?"

"It's in the fridge?  It was hot and I stuck it in the fridge so it would cool down and I could put it in my suitcase.  So the fridge.  It's in there."  I spoke calmly and tried to ignore Scott's shaking shoulders as he giggled at me.

Silence from the woman on the other end of the line.  I had to say something.

"What, you've never heard that before?"

She lost it.  The woman let loose with a guffaw that I think other people on the bus could hear.  

"No, that's a first for me, miss.  Let me get your Sparlings taste like chicken.last name and we can rescue your iron from the fridge."

"It's Sparling.  S-P-A-R-L-I-N-G."

"Tyson?"

"Tyson?  No!  Sparling!  Like darling with an S-P!  How did you get Tyson?!"

And then I remembered I was the one who was calling to retrieve her curling iron from the refrigerator.

And so I shut the hell up.

*   *   *

Originally published here:  It's In the Fridge.

December 19, 2011

Revisiting: Channeling Grammie.

I'm taking a little bloggish hiatus this week to hang out with the family and do holiday-type things, so I'm revisiting some posts from back in the day.  This one?  Is about them apples.

*   *   *

You know, "red delicious" apples are not properly named.  They are crap.  They should be renamed "Crapples," because they suck.  Gala apples are the bomb.Last night after work, I stopped by the grocery store to pick up a few things on my way home.  The place was post-work packed.

I was wearing a dress with a bit of a busy print, and loud, clacking heels, so I wasn't really a shrinking violet.  But it wasn't a big deal to be a big over-dressed for grocery shopping - I was just running in and running out as quickly as I could.

I go to the produce section and fill my cart with a few items, then I remember that Chris asked me to get fruit.  So I went over to the selection of apples, which had apparently just been refilled, as they were piled high.  High as in like two dozen levels of red, shiny apples.  With a plastic bag in my hand, I reached out and grabbed an apple.  And then another.  

And then I reached for a third.

Which must have been precariously placed.

As every apple in the stack came tumbling towards me.  Like in a cartoon.

"OOOOH!"  I yelled, whipping my arms around like a windmill in effort to stop the avalanche.

"OOOOH!"  I yelled, as I pressed myself against the side of the shelving to keep the apples from hitting the floor, letting them pile up against me instead.

"OOOOH!"  I yelled as the apples created a slope against my body and then starting falling faster from the tower, rocketing off my shoulder and flying high into the air.

"OOOOH!" The woman a few feet away yelled, as an apple ricocheted off the shelving and landed in her cart. 

I was dying of embarrassment.  The apples were hitting the floor with a loud thunk and people were staring and the grocery store produce guys were running over, trying to help, but their laughter rendered them useless.

"Oh my God, please make this stop.  Please, can you just make the apples stop their onslaught!"  I pleaded, my arms filled with fruit.

The produce guy closest to me tried to stem the flow of apples, but it was fruitless.  These apples were powered by inertia and determined to make a spectacle of me.

"Miss, you need to step away from the apples so we can clean them up.  Can you move back a few steps?"

"If I move, all the ones I'm holding will fall.  And then I will of shame."  I tried to talk without moving my mouth, as to not further enrage the apples.  

The produce guy tried to hide his laughter.  "Miss, step away from the apples.  I'm ready to deal with them.  In three ... two ... one ..."

I moved back and all the apples I was holding in my arms tumbled to the ground with a SMACK.  A sea of large, red marbles on the tile floor.  My face was as red as an ... well,  you can guess. 

"Can I help you clean up?  Or can I go?  Can I just walk away and pretend this didn't happen?"

"Run, lady.  You might want to run."

I fumbled for my purse and my grocery cart and tried to eek away gracefully (as gracefully as one can, with loud heels and a noticeable dress), turning my ankle on an apple only once.  People were smirking and laughing, and one old man started to applaud.

I left the grocery store, my face on fire and laughing to myself.  I called my mother from my car and told her the story through my embarrassment and tears of laughter.

"I think I'm channeling Grammie," I said.  

"Oh Kerri ... you're right," my mother laughed.  "Grammie was known for wearing platform shoes in the grocery store and falling over at the deli counter.  And you know what?  I wore platform shoes to the deli counter when I was your age and I fell over, too!  It's hereditary!"

Note to self:  Do not buy platform shoes. 

*   *   *

Originally published here:  Channeling Grammie.

December 16, 2011

Myabetic: The Champ.

A few years ago, I connected with Kyrra Richards, creator of Myabetic, to highlight the completely adorable "Lovebug" meter case.  She and I have talked a few times since, and I had the opportunity to reconnect with her at the Diabetes Sisters conference in San Diego back in October.

It was at that conference that I was able to check out her new project, Champ, in person.  And it's totally cool, in that "hey, let's make my glucose meter case something that doesn't suck" sort of way.  I love it.  

I asked Kyrra what the inspiration for Champ was, and she had this to say:

"We wanted to create a colorful supply case that captured the energy and active spirit of children with diabetes.  The Champ reminds kids that diabetes doesn't limit their ability to have fun and play.  Run, jump, and don't be afraid to get dirty - just make testing time part of the game plan.  Warm up your muscles, tie your sneakers, and test your blood sugar.  I know the Champ will excite young sports fans and create a positive association to their diabetes care.  This shift in perception is the reason I started Myabetic - I want children (and all of us living with diabetes, for that matter) to feel special, unique, and proud of our ability to control our health."

The Champ!!
Exterior of the case

The Champ!  Yes!  This alt text is strikingly similar to the previous alt text!
Interior of the case :)

Hell yes.  Kyrra and her team have continued to inspire me, and I really love her work as an alternative to that boring, black, standard, yawn-inducing meter case. 

Visit the Myabetic website to score some great holiday deals, and thanks, Kyrra, for everything you do!

December 15, 2011

Twenty.

My lovely Bird,

There's something about my travel schedule that has these weeks passing faster than I'd like.  I've been on a trip a week for the last three months, and I feel like every time I come home, you look different. 

"Oh Mama! Hi!"  You greet me as though we're meeting for the first time, always with a big smile and a wave of your chubby little wrist.

Actually, the chubby-little-baby phase is past.  I realize that every time I look at your picture or give you a big hug.  You are fast-becoming a little girl, one that reaches up to hold my hand when we go up the stairs towards the front door, but pulls back when you're sure of your footing.  Fiercely-independent, you are, and it's evidenced in everything you do.  "Socks!"  And you want to put on your own socks.  (Usually a long and painstaking process, involving you trying to ball up the sock to fit onto your big toe.  Then, "Ta-da!") 

You want to get your own book, pick out your own pajamas ("Do you want the monkey jammies?"  "Eeeee!! Eeeeee!" as you pretend to scratch your armpits.), and buckle yourself into your car seat.  You want to do. it. yourself, and I'm amazed at how much of myself I see in you as you furrow your brow stubbornly and try.

Oh, and those poor kitties.  You love them.  You LOVE them, and you want to smush your face into their bellies while they sleep.  Their feet?  Their tails?  Their eyes?  Noses?  You want to pet it all, asking "What's that?" and then repeating the answer softly to yourself. 

"That's Siah's tail." 

"Size tay-el," you mutter, reaching for the gray mass.

Birdy and "Size."

They remain remarkably patient with you.  You're like the cat whisperer, only you don't whisper.  Usually, you chase after them with your pink, plastic shopping cart, sealing my theory that you're en route to becoming the crazy cat lady ... already.

And you are crazy.  Crazy in all the ways that make me laugh.  You are silly.  You make weird faces and you give big hugs and you are not afraid to ask for faffles in the middle of the night.  (And we aren't afraid to make them, either.)  You read books out loud, in your special, Birdy Language which includes insane hand gestures and a full two-octave vocal range, and sometimes a tutu.  Your favorite songs this month are Coldplay's "Paradise" and anything by Jay-Z.  And your tantrums are this strange, braided dance of spastic kicking feet and a sideways glance to make sure I'm watching.

"Birdy, you are going in time out."  And I put you in the time out chair, turning my back to you so I can count to ten.  "One ... two ... three ... four ..." and as I count, I hear your chiming in and counting with me, giggling excitedly when we get to ten.  And sometimes it takes me until "twelve" or "thirteen" to stop smiling enough to turn back around.   

When I'm away from you, I miss you.  And when I'm with you, and you snuggle up beside me and pat my face and say, "Hi, Mommy," and I fall in love with you all over again.

You're only twenty months old today, my love, and I have no recollection of life before you.  In my heart, I've always been your mama.  And that feels right.

Love you so much,
Mommy

December 14, 2011

From Abby: Employed!

I could NOT be happier for Abby, who has just scored her dream job.  Congrats, Abby!!!!!

*   *   *

To do list:  CONGRATULATE ABBY!!!  :DAttention world, I have just landed my dream job. And I'm SO FREAKING PUMPED!

I want to be that nurse kids remember as the one who taught them how to give injections and teenagers remember teaching them how to be secure in their disease while dealing with the tragedies that are the teen years. I want to be the nurse that adults remember for teaching them about how to cut a hole in their tape to keep that sensor on a few more days.

I applied to nursing school because of diabetes; because I have diabetes, and because you have diabetes, and I want to help.

Folks, I have just been given the opportunity to do all of the above.  This job is entry level, I'll be refilling a lot of prescriptions and answering patients phone messages and giving the occasional injection, but it's a start - and all of my hours there will count toward being able to take the exam to become a CDE (not to mention that everyone I met in the office during my interview is SO incredibly nice and helpful and just overall amazing).

For those reasons, this job is perfect. And I owe a lot of this to you out there. The DOC has given me the courage to go after what I really want, no matter how difficult the process. You've given me the strength to apply to that out of state job even though I still have nine months left on my lease here in Boston. Most importantly, you've all given me the purpose to go out there and be a positive and helpful nurse even to patients with the most ridiculous problems, because everyone needs help sometimes.

So celebrate with me please, because I'm am super, duper happy today :)

(Special shout out to Sara for helping me not freak out about my interview and answering my silly email questions. You are so fantastic :) And to Kerri for dealing with a completely scatterbrained assistant during my job hunt, which defeats the purpose of an assistant, but please don't tell her that ;) )

*   *   *

Abby, you should be happy today.  Congratulations - and we're all so, so proud of you!!  You will change the face of diabetes, one patient at a time.

December 13, 2011

Adventures in Dubai.

Like I said yesterday, I didn’t sleep on the plane ride over.  Not on the leg from Boston to London, and not on the journey from London to Dubai.  I was too awake and too nervous to close my eyes.  Much of the flight from London to Dubai was in the pitch black of night, leaving me only able to tell my location by looking at the interactive travel map.  

But I watched the sun rise over the deserts of Kuwait.

“Huh.  Sunrise over Kuwait.  I can check that off my list.”

(It became one of those items I wrote on my “list” simply so I could check it off.  Because I never, in a million years, thought I would ever watch the sun rise over Kuwait.)

I’ve never been anywhere like Dubai before.  My exploration of the world has been mostly limited to the United States and Canada, with a few visits to Europe in the last two or three years, so culturally, I’ve never experienced anything truly different from what I grew up with.  Language barriers, sure (especially in Spain, where Chris and I ended up communicating with the cab driver through carefully drawn napkin pictures), but never a true shift.

Visiting Dubai was the furthest from home I’ve ever been.  My cell phone didn’t work.  My international cell phone barely worked (my fault – I should have bought a SIM card with more prepaid time on it).  Internet outside of the hotel was spotty, so outside of the scheduled calls home to check on Birdy and Chris, I was in this new world and out of touch with my world.  

There were a lot of familiar faces from the diabetes online community out in Dubai at the same time as me - Manny and David and Cherise - but I wasn't attending the Congress so much as participating in the Six Degrees event.  Since i only spent one day at the Congress, I felt like I was halfway across the world and tooling around on my own. 

And it felt liberating.

A few years ago, the airport was the scariest place on the planet for me; more so than the plane itself.  Something about thrusting myself through security and trying to get everything (diabetes crap included) through the x-ray machine without feeling anxious, coupled with my fear of flying, made travel something I didn't look forward to until I was at my destination and on the beach.  (And even then, I was sort of riled up about the trip home.)  But over the last five or six years, I've done a significant amount of traveling - alone, even - which has me more accustomed to the chaos. 

And last week, I went to the Middle East, by myself.  I navigated a completely new world without panicking.  Even though I had my fellow PWDs (when we were able to connect through email, that is), the Six Degrees team, and a friend or two to hang out with, I wasn't afraid to be alone.  I had my medical alert bracelet hanging off my wrist, enough glucose tabs to choke a camel, and an international cell phone that worked well enough to call home if I needed.  Almost seven thousand miles from home, I felt oddly confident.  To people who have been comfortable traveling their whole lives, this isn't a big deal.  But for me, this was a big deal.

The people I met along the way were incredible.  I have to admit to preconceived notions about the people of Dubai.  When your knowledge of a group of people is limited to Google search results, you are sure to only get a small bit of the bigger picture.  Most of my Internet research showed me lists of what NOT to do and examples of ways that my American cultural upbringing was going to be offensive in the UAE.  I should have known better - as a person with diabetes who was rattled by what Google had to say back in 2005, I should have known better than to believe everything I read on the Internet.  From the father of five and pilot that I met on the flight over (who offered his and his children's cell phone numbers, should I have any issues while traveling) to the cab driver who gave me an impromptu taxi tour on the way back from the Diabetes Congress to every single person who I encountered on my travels, the people of Dubai were very welcoming to this American mess.

Plenty of people go to Dubai every day.  And there are millions of people far more traveled than me.  But this trip really opened my eyes to the fact that the diabetes community has brought me to some incredible places, and has given me the opportunity to cross things off of a list I didn't even realize I had.

December 12, 2011

Traveling with Diabetes: I Can't Tell Time.

I traveled by small, wooden plane.  The flight from Boston to London took just over six hours.  The time change was five hours ahead of Boston, so when we landed at 6 pm, I was only ready for lunch.  The trek from London to Dubai was almost seven hours, pushing the clock ahead a full nine hours from Boston, making my head hurt because how was it Wednesday morning when I was still on Tuesday’s timetable?

(I wrote about the impact of changing time zones for an Animas column last month, but I seriously had no idea what I was in for when I decided to take the trip to Dubai.)

That first day there, the Wednesday, everyone gave me the same advice:  “Don’t go to sleep.”  (It felt like A Nightmare on Elm Street.)  “Work through the exhaustion and just go to bed on Wednesday night on Dubai time, and you should be good the next day.”  

For the first few hours after landing, I couldn’t make my body recognize the time change, and once it did, I had to force myself to stay awake instead of curling up on the hotel bed at two in the afternoon.  (Which is why I ended up foraging for coffee and meeting up with a friend to drag my jet-lagged body around Dubai for some exploring.)  And even when I started to adjust (a little), I still had no idea what time it was because of the freaking 24 hour clock.

“Just subtract twelve.” 

(This from the same people who told me not to fall asleep.  I should have told them that exhaustion made math impossible for my brain, but instead I just smiled and tried to remember my own name.)

I couldn't tell time.  Mentally, I was turning the gear on the back of an old cuckoo clock and watching the hands spin around the face.  Subtracting by twelve?  Simple, but somehow became this big mess and the only way I knew the time was after changing my pump to 24 hour time display.  

Telling time was one (sad) challenge; keeping track of my diabetes in this new time frame was entirely another. But I'm very determined to make small subtractions at least in my A1C, so I didn't want to apply the mindset of "Eh, I'll just get back on the ball when I get home," or "After the holidays is a better time to refocus."

Unfortunately, I had some problems with my Dexcom on the way over to Dubai.  The sensor I put in on Monday morning completely crapped out on me during the flight to London (complete with "???" and "SENSOR FAILED" and "Kerri, you're an idiot for not bringing a back-up sensor, silly fool"), so I was flying blind. 

On average, I blew through about fifteen test strips a day while traveling.  Seeing the number on my meter was one thing, but not being able to "see where it's going," CGM-wise, made me very insecure.  My alarm went off in the middle of the night (or, as far as my body was concerned, mid-morning) so I could test and make sure I wasn't tanking.  (But of course, once I tested, I was awake for the next hour and a half, watching Disney TV shows on the hotel television, subtitled in Arabic.)

Basically, I spent five full days completely confused.  What end was up?  I had no idea.  What was my blood sugar doing?  I wasn't sure, but I kept stalking it and thankfully avoided any highs or lows.  (I think my lack of appetite due to exhaustion helped out in that regard - hard to get high when you don't want to eat.  Conversely, treating lower numbers was kind of tough when you're full after two stupid Swedish fish.)  What country was I in? 

Oh yeah, the United Arab Emirates, visiting the World Diabetes Congress and participating in a project for Novo Nordisk.  Halfway around the world with only a carry-on filled with Swedish fish.

The Swedish Fish website is awesome.  They have chatty fish over there!

[Disclosure:  Six Degrees Medical Consulting, asked me to participate in a patient advocacy discussion with advocates from around the globe, covered my travel and lodging, and provided a per diem.  They worked with Novo Nordisk for this project.]

December 11, 2011

Trimming the Tree.

"Where's your Elmo, Birdy?"

She grabs my hand and pulls me over to the Christmas tree, where's she's been busy trimming.

Elmo is Father Christmas in this house.  Instead of "Ho, ho, ho!" he says, "Hee hee hee!"

"Nice."

She nods happily.  "Nice, Mama."

December 09, 2011

Photos from Dubai.

Some photos from Dubai, because I'm still there and am so jet-lagged that I have no idea what day it is, never mind how to finagle word things.

Downtown Dubai
In downtown Dubai, after meeting up with some of the World Diabetes Congress PWDs

The Persian Gulf sky
Looking out into the Gulf from Palm Island

View from the world's tallest building
View from the top of Burj Khalifa (highest building in the world)!

On the monorail, heading back from The Palm Island
On the monorail, headed back from Palm Island

Amazing place, but I think I miss that little Rhode Island. Heading home later today, and I can't quite wait.  :)

December 08, 2011

From Abby: Dr. Awesome.

Newly-minted as a nurse, Abby sees the health care system from a myriad of perspectives. Thankfully, today is about Dr. Awesome. 

*   *   *

This is a blue stethescope.  Yup, that's all I've got for this alt text.  There is often a lot of talk in the Diabetes Online Community about health care professionals. We deal with them on a regular basis, and we deal with quite a variety of different providers - so I'd say our opinions are valid when it comes to ranting about or praising HCPs. As a newly-licensed Registered Nurse, I take everything that I read and hear into consideration as I begin my own journey in this field, as someone who will (hopefully) have her own set of patients some day as a Certified Diabetes Educator (hello life goal).

That being said, I talk about my own providers as much as everyone else. I've encountered some nasally sensitive lab techs, and some doctors at conferences that like to put everyone on pills no matter what their test results. Fortunately, as far as my own physicians go, I've got an arsenal of excellent people on my team. (Seriously, my ophthalmologist calls my retinas "beautiful" - and he wears cartoon ties.)

Principally, my endocrinologist. She is everything I want in an endo AND she emails me. WOAH.

When I first transferred to Dr. Awesome's practice from my pediatric endodrinologist at a large hospital, I went to her purely because her office was closest to my house. I didn't do any research; I didn't try different doctors. My first A1c with her was in the 10s (so she says, I don't recall this at all - ignorance is bliss I suppose, and college was rough for me).  Needless to say, we didn't see eye-to-eye those first few visits. Dr. Awesome put me on an upgraded Medtronic pump (I had been wearing mine for over five years), and started in with her plan of attack, or so I assume.

Long story short, within a few years, a lot of hard work, and an awakening from going to Clara Barton Camp and realizing diabetes was something to embrace and not avoid, my A1c has now been under 7% for over a year (I'm not bragging, seriously - I have only myself to take care of and a ton of free time and get really lucky at carb guessing), I'm wearing a Dexcom almost all of the time, and I feel great.

The point of this whole story, is that sometimes it can take one bad apple to ruin the taste of the pie - er, one bad HCP to ruin our image of doctors? But there are a plethora of helpful, caring, patient, and understanding professionals in this world that really do worry about us.  Case in point, an excerpt from the email I just received from Dr. Awesome, in response to me thanking her for dealing with my new hypothyroid diagnosis from four hours away:

"Please give some heads up when you are in town so that I could arrange patients and get you in.  I don’t want you to feel you are hanging out there doing this on your own ... Hope to hear from you soon.  I am in the office several days over the Christmas holiday week if you want to try and come in then."

So if you have a doctor that makes you feel guilty when you admit to eating an entire cheesecake and dealing with the 350+ mg/dL blood sugars just because it was delicious, or a nurse that scowls at you when your A1c isn't under 7% - talk to your provider about how you feel, or keep searching and don't think they (we) are all like that. There is a Dr. Awesome out there for you too, I promise!

(Please note Dr. Awesome has no idea I'm writing this, and she probably doesn't even read this blog - I was just so freaking astonished at this email I had to tell everyone :) ) 

*   *   *

Just like every patient, Abby has had really good, and some not-so-good experiences with health care providers.  (Just like every HCP has had good, and not-so-good experiences with patients.)  Do you have any "my HCP is awesome!" stories to share?

December 07, 2011

From Abby: Getting in Touch with JDRF.

Abby, like me, grew up with the JDRF as her go-to organization for diabetes.  She's recently reconnected with her local chapter, and people recognized her from Twitter.  (HA! Abby! I told you you'd love Twitter. ;) ) Here's an update on how she's getting in touch with the JDRF locally.

*   *   *

How do you advocate?  And do you use an old-school radio microphone?  When I was a kid I was such a big fan of JDRF. I walked on my friend's advocacy walk team even before I was diagnosed. (I was diagnosed with diabetes two months later - that stuff is contagious apparently.  And yes, I am kidding.) I went to every dinner, kick-off event, fundraiser; You name it, I was there. I even got to the point where I was speaking at these events. Telling my diabetes story to get people to "understand," and donate money. I loved it.

The JDRF is an amazing organization, they do so much for diabetes, they make kids and families feel like they aren't alone, and that they have support whenever necessary.  They have even made huge strides in the Artificial Pancreas Project, which is quite literally the closest thing we've had to a cure in - well - ever.

In short, I love me some JDRF.

Unfortunately for the past eight years or so I hadn't been as involved as I probably should have, or have wanted to be.  Once I went away to college, it was hard to keep up with my walk team, and to raise money when people thought I had the kind of diabetes that the press likes to make out to be the patients' fault. I eventually gave up on it, and turned to camp instead.

Since moving to Boston, however, I have realized that I need to get back into helping - and it just so happens that the Bay State Branch of JDRF is starting up a Young Leadership Committee here in Boston.  I don't know much about it, but Briley invited me to go to a meeting a few weeks ago with her to check it out.  I figured at the very least it would get me out of the house and to meet new people.

After the initial "Hey, are you Abby? Do you work for Kerri? I recognize you from Twitter," silliness, the meeting got started and I was quite impressed.  I did feel a little out of the loop since it was my first visit and they were talking about all these other events that had happened that I was completely clueless about.  This YLC group is targeting the "lost generation" of people with type 1.  Those of us who are 21-35 years old who have had this disease forever and kind of get forgotten about since we're past the cute kid stage.  So far, they are planning on doing a holiday meet-and-greet type of event in Boston, so we can get to know each other better and have a more solid support system here in the Boston area.  I absolutely loved this idea.  There was also talk of a Marathon Monday fundraising event at a bar on the route. Again, such a great idea.

I guess what I took away from this meeting is that even though I was definitely an outsider in this group, there are people who acknowledge this population of PWD who have been lost in the shuffle, yet have a lot to contribute.  We have friends and contacts and interests that are much different than the child demographic, and tapping into this resource could generate a lot of support of JDRF.  I'll definitely be keeping up with this group, and hopefully getting back into JDRF as much as I can.

*   *   *

Not everyone has to support the same diabetes advocacy organizations or even the same goals.  Our strength is not what divides us; it's in what unites us.  What are your favorite ways to advocate for diabetes? 

December 06, 2011

Guest Post: New to Diabetes. New to Motherhood. New to Cancer.

Meghan's story is honestly one of the most amazing and terrifying whirlwinds I have ever heard of.  She went from "completely healthy" to a person with type 1 diabetes, then a new mom, and then a person with cancer ... all in the span of 18 months.  Her story is an important one to be told, and I'm really honored to be hosting her words here today.
*   *   * 
My name is Meghan.  I am a type 1 diabetic.  I am a new mommy.  I am a cancer survivor.  I am only 27 years old.  When diagnosed with Hodgkin’s Lymphoma last year, I scoured the internet for info pertaining to both Type 1 and cancer.  I found nothing.  I hope to provide at least ONE resource for people that might find themselves in a similar, unfortunate situation.

This is my story.

When I was diagnosed with type 1 diabetes in April of 2009, I was completely caught off guard.  I was a healthy person, or so I thought.  I ended up getting a Dexcom and Omnipod within six months of diagnosis.  Obviously diabetes was a huge change to my life routine.  My beta cells were still cranking out tiny bits of insulin, so I decided to take advantage of the “honeymoon period” and plan a pregnancy, figuring that would be the best time for blood glucose management. A short while later, on November 1, 2010, my husband and I welcomed our son into our lives. 

And when my baby was less than three weeks old, I was diagnosed with Hodgkin’s Lymphoma.  It was such a shock.  I only had a very slight pain in my chest that turned out to be a tumor the size of a baseball just above my heart.  When I heard that news, I knew my world and sense of security had changed, once again.  I was about to begin the fight FOR my life.  I remember yelling at the doctor who told me the news – “I was JUST diagnosed with diabetes, are you kidding me!!!”  I was so scared of what was to come.  Not physically, but emotionally.  I already thought that the burden of diabetes was too much.  I wasn’t sure I could handle my new reality as well.

Ironically, right after my diabetes diagnosis, I remember asking my husband “What will happen some day when I am like 80 and get diagnosed with cancer?  Will my cure be harder to come by?”  Who would have ever thought that fear would become my reality at just 26.  During my first meeting with my oncologist, I made it clear that I did not want diabetes to change my odds.  My 90% chance of a forever cure would not drop because of diabetes.  I received the same four chemo drugs as every Hodgkin’s patient.  I got the same dose of the steroid Decadron before every treatment (and had the pleasure of my pump dying during the process).  The only difference?  I had to think of crazy basal rate adjustments before getting the steroids and for two days after each chemo.  I think it was 3.5 units/hour!  My BG consistently ran 250+ for a few days after every treatment.  There was nothing I could do to lower it.  I stopped caring, I just wanted to survive.

Perhaps the part of cancer I found most challenging for diabetes was a PET Scan (actually two in my case).  In a nutshell, this test provides the doctor with a full body picture that illuminates areas of active cancer.  It is accomplished by the injection of radioactive glucose into a patient in a fasting state without insulin.  I couldn’t have food after midnight.  My first PET, I was still experiencing some postpartum blood glucose swings and was always low around 5 am and usually still requiring a snack at that time.  I tried to compensate with an 11:30 pm pasta binge.  With a PET Scan, you also can’t have insulin for three hours before the test.  Oh yes, and your blood sugar must be below 200 in order for the test to be functional!  Talk about a diabetic nightmare!  Of course I failed the process, twice.

As in every situation, it is important to find humor.  I remember waking up from my second biopsy to find my husband in deep thought pondering the placement and insertion of a new pod and Dexcom sensor (my doctor was very concerned that a blood sugar of 180 mg/dL be corrected, immediately.  Seriously?!?)  Watching him fiddle with the bolus function while I later downed pudding made me laugh (and made me nervous). He is now a professional when it comes to all things diabetes related!  I can’t even count the number of times I have had to rely on his diabetes-judgment and skills over the past year!  He has made me feel less alone in my little diabetes world.

Meghan and her adorable son!!
Meghan and her completely adorable son

As of today, I am in remission.  Through all of this I’ve learned that it’s hard when deciding how much to share with others, both about cancer AND diabetes independently.  I struggle with sharing too much about what happened in fear of pushing others away – with sharing just enough in hopes that they might understand me better but still see me as normal. 

Cancer was hard, the process grueling and I had a newborn.  But we made it.  I am on the other side looking back with a new insight – Life is simply amazing, especially since I know I am not supposed to be here.

*   *   *

Meghan has graciously shared her email, meghan.manor@gmail.com, if you want to reach out to her.  Thank you again, Meghan, and we are so glad you are here! 

December 05, 2011

Morning Mugging.

The coffee cup that was front and center this morning was this one from the Behavioral Diabetes Institute:

Well-managed diabetes is the leading cause ...
News flash:  Well-managed diabetes is the leading cause of ...

NOTHING.
NOTHING.

The last few weeks have been better.  I'm a fan of "better." And I also appreciate coffee mugs that seem to know what I'm thinking, like that one.  Or ... like this one.

December 03, 2011

Snapshots: Back Up Insulin Pump.

Will this fit into my carry on?

Usually I don't think of it until the day before I leave, but I am glad I (finally) remembered to make the request for a vacation loaner insulin pump for my trip next week.  This shiny little spare arrived on Friday afternoon, with plenty of time to spare. (And it came with a handy little card to help explain itself to airport security people.  A nice addition to the letter I received from my doctor at Joslin, outlining the same sorts of things.  I feel double-prepared ... for once.)

[Animas disclosure]

December 02, 2011

Small Victories.

I need to celebrate the small stuff, instead of sweating it.  Also, laughter is the best medicine. And humor is in uniform. TAKE THAT, READER'S DIGEST!!!After a hellish A1C and a little bit of emotional purging yesterday (thank you guys so much for all of your support and encouragement), I need to take my small victories, diabetes and otherwise, into account.  So here we go:

  • Since having my A1C drawn, I have been significantly more attentive about testing my blood sugar.  For the last three weeks, I've been making myself STOP what I'm doing, even if it seems SO IMPORTANT and slowing down for the 30 seconds it takes to test my blood sugar.  During the course of any given day, I'm all over the place, schedule-wise, so it sort of feels good to force myself to breath and pay diabetes a smidge of attention.
  • In conjunction with testing, I'm also making a conscious effort to react to the numbers, even if I feel distracted.  If I'm over 140 mg/dL, I'm correcting that number and using the bolus calculator on my pump.  If I'm low, I'm rejecting the desire to tidy up and instead I'll hit the grape juice bottle for a quick swig.  Small victories.
  • I bought pants that didn't need to be hemmed.  (Not diabetes-related, but for this 5' 3 3/4" girl, that is quite a victory.  #short)
  • Siah, due to her incessant padding around on the bed while we sleep, has been banished to the living room at night (read: we shut our door).  Even though she spent the first few nights yowling at the door, she's now quieted down and spends her evenings plotting revenge from the couch.  Sleeping more soundly is a victory.
  • Also in the last three weeks, I've been back to my routine at the gym. It's another thing to carve out time for, but I know it's important and ... blah blah ... it sort of feels good okay don't tell anyone I said that run on sentence.
  • When I went to get the Bird out of her crib this morning, she greeted me with a very sunny, "Oh hi, Mommy!"  I love that she is happy every morning, and that she greets me as though she's surprised to see me.  "Oh hey, thanks for stopping by, Mommy!  Would you like some biscuits?"
  • The buttons on my coffee maker, despite being caked with baking flour, still work and the coffee maker still brews up some delicious coffee yums.  Not bad for a $10 Mr. Coffee from Target.  (And you have also worn coffee filters as a hat at one time or another, right?  Just me?)
  • I remembered to order holiday cards, and I can't wait for them to arrive.  This is kind of a #bigvictory because I'm so scatterbrained lately that I'm lucky I remember to put my pump on.  So I'm celebrating this one in my head with a happy dance.
  • I'm on the hunt for movies and music to entertain myself with on the epically long flight to Dubai next week.  If you have any recommendations, I'd love to hear them.  And this counts as a victory because I'm remembering to ask this now, instead of Tuesday morning from the airport in the wee hours.
  • I haven't sworn yet today.  At all.  This is also a big victory.
  • Oh shit, I said "hell" up there in the first paragraph.
  • Argggggh ... see above bullet point.
  • Please negate the bullet point that's three up from this one.
  • And I'm feeling much, much better after yesterday.  You guys really know how to make a girl feel empowered, and less like crap.  So thank you very, very much for being a part of what is making me feel victorious today.
What small victories are you celebrating?

(Blog post title nod to Ms. Amanda Dolan - she knows why, and she also knows the tune. #smallvictories)

December 01, 2011

Honesty Sucks.

[This post has been removed.]

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