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October 31, 2011

Halloween and Diabetes: 2011 Edition.

Happy Halloween!!!  I've been writing about the diabetes and Halloween nest of chaos for the last few years, and I wanted to highlight a few of my past (and some recent) Halloweenie posts:

Pumpkin item one!"Dressing up was not an issue. I wore my silly costumes proudly and they were always homemade. I was a fairy godmother one year. I was a gypsy for about three years running. Another year I was Bo Peep, complete with sheep.

Then one year, I was diabetic."  - More Than Candy and Costumes (Generation D, 2006)

Pumpkin item one!"I never dressed up as scary things. I wasn't drawn to witch costumes, or goblins. But one costume I always pictured was dressing up as diabetes.

Only I couldn't completely nail down what that would look like." - My Diabetes Halloween Costume (Generation D, 2011)

Pumpkin item one!And then there's that video with the convict costume:

But what Halloween is really about this year, for my family, is seeing how much longer we can convince Birdy that she's a fire-breathing, high-octane-giggling dragon:

Squeeze her too hard and she'll burp fire all over you.

Dragon Bird, taking a break

Happy Halloween, everyone!!!  Stay safe, and don't burp the dragon, or you'll end up needing a fire extinguisher.  

October 29, 2011

Snapshots: The San Francisco Shuffle.

There's the story about almost missing the flight out.  And the one about how the first flight had to make an unscheduled landing to deal with some pressurization problems.  And then how I almost missed the flight home because the driver couldn't find his GPS.  Oh yeah, and I was only on the ground in San Francisco for twenty-four hours.

But I saw the Golden Gate Bridge, damn it.

Thanks to the three guys with their Nikon camera expertise who offered to take the shot.  Of course, it looks like the bridge is growing out of my head. Experts.

And it was a beautiful day.  

"No fog today, miss," said the driver, blaming me for bringing the sunshine.  I couldn't claim that, but I did bring the glucose tabs.  Holla.
 
I'm already looking forward to the next trip out.  :)

October 28, 2011

Diabeetus Ink.

For someone without any permanent ink on their body (unless Sharpie marker counts), I sure do feature a lot of posts about tattoos.  Like the one of the Minimed pump.  And Abby's dia-ink.  I think that committing fully, and tattooing something diabetes-related on your body, is a really daring feat.  

And sometimes, I get emails from people who have diabetes tattoos that make me laugh out loud and I beg them to let me share.

Thankfully, SUM reader Tim didn't mind.  His diabetes tattoo is straight out of one of my favorite TV shows, The Family Guy.  Here's Tim's quick take on the how and the why, and then you have to see these photos:

From Tim:  "I got this tattoo at Hard Knox Tattoos in Hinesville, Ga. I'd been wanting some fresh ink for about a year, but I couldn't decide on what it should be. I wanted something to tie in with my diabetes. When I saw the Family Guy clip with Wilford Brimley I knew what it had to be. I bounced the idea off of my friends and coworkers with mixed responses. My diabetes camp friends thought it was awesome. My mother didn't."
"I love my new tattoo and I can't wait to show it off at diabeetus camp next year.
Well-played, Tim.  Well played, indeed.

October 26, 2011

Getting Ready for Diabetes Month.

Diabetes Month is fast approaching, and I've been thinking about this community - our community - and how much it means to me. I was reminded of a poem I wrote back in 2007 about the impact this community has had on my own health and awareness, and I wanted to share it here, because you guys are what matters.  

What Matters (originally published in November 2007):

I live every day with a pump at my hip
A meter close by, and a smile on my lips.

So many moments there are in my day
When it seems that my pancreas gets in the way,
Be it exercise, cooking or sleeping or driving,
I’m constantly checking to keep myself thriving.
And while my fiancé, my family and friends
Support me and hold me and love to no end,
I started to blog because I felt alone -
The only diabetic as far as I'd ever known.
Needing to find others who understood
How a number was scary, how a food could be good.
How I worried my eyes were damaged from cake.
I worried my worries were too little, too late.
How I worried my feelings were strange and unique
And that my diabetes made me some kind of freak.

I wrote my first post, took a great gasp of air,
Hit the big publish button and from out of thin air
My words were set loose to the great world wide web
And I wanted and hoped to hear what others said.
Within just a week I had found several others.
Type 1’s and type 2’s and some fathers and mothers.
These people, they knew, and I felt less alone.
I feared less my future and all the unknowns.
The blogging took off and it chronicled things
Like my job and my friends and my engagement ring.
I poured out my feelings and dealt with my fears,
I let loose my laughter and reigned in my tears.
I felt so much stronger with all the support
Of the people who knew how my body fell short.

When I peel back the layers to what matters most,
It's not about how many readers I host.
It's not about statcounts and not about feeds.
It's not about fame and it’s not about greed.
It’s not about comments or big recognition,
It’s about all the challenges of this condition.
This community knows me where I hurt the most.
It makes me feel normal, supported, and close.

I'm thankful for every day towards good health.
I’m thankful I’m not doing this by myself.
Endless thanks to the people who read these brave writers
And for making the burden we carry much lighter.

 

October 25, 2011

Yes? Dexcom? You have a question?

"Yes, Dexcom?  You have a question?"

BEEEEEEEEEP!

"Oh, I see you have several questions.  Three, in fact.  Well let's just hold each other close and see if that helps, okay?"

BEEEEEEEEEP!  SENSOR FAILED

"Oh dear.  That's not good.  Okay, since we just stuck this one in, let's try it again, okay?"  Clicks a few buttons to restart sensor.  Sighs.  "Yes, Dexcom?  You have three questions again?"

WHAT ARE YOUR FREAKING QUESTIONS?  AHHHHHHHH!

I hate, hate, hate when Dexcom sensors don't queue up.  I don't often have this problem, but when I do, it makes me go completely and utterly berserk.  Putting a new sensor in doesn't hurt, usually, but it's not the highlight of my week, so having to peel off a sensor that's only a few hours old and stick myself with a new one makes my head explode with frustration.

(Am I the only one who pictures the Dexcom sensors questions as a long, drawn-out game of Marco Polo?  Where the receiver is hollering out "MARCO!" in the form of those infuriating question marks, never answered with a "POLO!" of any kind?  Maybe the sensor gives up because it's lonely.)

I gave this one a lot of tries (as you can see from the photo), but sometimes you have to tell technology to go screw and start over. 

[Dexcom disclosure

October 24, 2011

The Return of Low Blood Sugars.

For a good, long time, I ran higher than usual on purpose because of my focus on the baby and my fear of low blood sugars while I was responsible for her care.  In the last few months, I've started to lower my blood sugar goals to reclaim a little more control and tighten up that freaking standard deviation.

Which also means that my sensitivity to low blood sugars is tossed out the window once again, along with any whisper of a symptom.  ("Pssssst.  You're low.")

So these lows are starting to creep back into rotation.  For a few weeks, it was the 60 mg/dL range that had me sweating and shaking and reaching for juice before bothering with my meter, because the symptoms of the low were so intense.  Those lows were weird because I wanted to drown myself in grape juice, even though I really only needed a few sips to bring me back into range.

But now, with my control slightly better and my meter average down a smidge, I'm back to the Symptom-Free Zone, where lows are caught more by the Dexcom and less by my actual body.  In the last week alone, I had:

  • a 48 mg/dL at 4:30 in the morning (wherein I started texting people back about random things, in my low stupor, and when I woke up, I had to ask people if I really had a text conversation, or if it was something I dreamt);
  • a 44 mg/dL which had me so disoriented that I fed the cats before getting my own juice (see also: casual low);
  • a 39 mg/dL after sleeping-in one morning, where my only symptom was confusion about who I was.  (I had to remind myself: "I'm a person.  I'm a person named Kerri.  Hello, Kerri!  Those are glucose tabs.  Eat them?")
Lows bug me out.  They are unnerving moments in my diabetes management when, even after all this time, this disease can grab me and shake the leaves off my mental tree.  And the lack of symptoms seems to be a strange reward for achieving tighter control, which is so counterproductive that it makes my liver throw its hands up in frustrated disgust.  ("Seriously?  Now I work harder?" while my pancreas happily sips on a mango margarita and plays soduku.)

I want that middle ground.  That place where lows aren't so dramatically low (I'd love a good 65 mg/dL as a trade for these 30's) and the rebound highs are so sticky.  Where troubles melt like lemondrops, and my blood sugar is 130, tops  ... something something. 

For now, I'm testing a freaking ton and relying heavily on the Dexcom as I make adjustments to my basal rates.  And I'm keeping my phone in another room while I sleep, to keep the 'texting while low' at bay.  ;)

October 22, 2011

Snapshots: Pump Reboot.

Sometimes I really do feel like a mad scientist.



Because my bathroom doubles as my diabetes laboratory.

... and photography studio, apparently.  ;)

October 21, 2011

The Droid You're Looking For.

Okay, THIS is the droid you're looking for.  Seriously.  He's right in front of you.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.

A moment of mental math took place:  I was rising, but I had some insulin on board, and how many carbs was I about to consume?  After a quick calculation of the insulin I had on board already, I reached underneath my shirt and grabbed the insulin pump off my hip.  Buttons pressed, bolus delivered, but whoops - ended up a bit tangled when I went to clip the pump back to my hip and I ended up flashing the infusion set on my hip by accident.  

The guy behind me in line was there with his son, who had started first grade a few weeks ago.  (How do I know this?  Because when they got into line behind me, the little boy smiled at me and said, "Hi! I started first grade last week!")  It wasn't until I had successfully untangled my pump and returned the Dexcom back to my purse that I realized the little boy was staring at me with wide, blue eyes.

"I learned a word last week in first grade,"  he said to his father, tugging on his sleeve insistently.

"What did you learn?" the father replied absently, as he foraged for his wallet.

"'Droid.'  It means you have robot parts.  Like Luke Skywalker's arm after his dad cuts it off!  And the yellow C3PO guy!  And that lady!"  He pointed at me.

"What?" The father was paying rapt attention now.

"She has droid parts.  I saw them."  He smiled, sticking his tongue through the hole where his front tooth should have been.

"Ethan, that's not nice.  Apologize to the lady - she's not a droid."  The father looked at me and said, "I'm so sorry!  He's watched a lot of Star Wars.  Like, a lot." while he put his hands on his son's shoulder.  

This is where I should have given a nice, concise speech to this little boy and his father about diabetes and the hardware involved.  This is where I should have said, "Oh, I'm not a robot.  I'm wearing an insulin pump and a continuous glucose monitor and I wear these devices because my body doesn't produce a hormone called insulin."  There are many things I should have done at that moment.

But instead, I grabbed my coffee from the counter.  I smiled at Ethan.  And I leaned down to whisper "I am not the droid you're looking for."

His whole little kid face lit up and his words came out in one, single, excited breath.  "Oh-my-gosh-Dad-she-knows!"

October 20, 2011

Opsite Flexifix: You Can Stick Around.

A few days before I headed to San Diego, I slapped on a new Dexcom sensor.  And when I was ready to fly out on Sunday morning, I noticed that the edges of the sensor adhesive were peeling back.  I casually mentioned this to a new acquaintance of mine, and she immediately started talking about "optiflex something tape?" and suddenly, a patch of it appeared from the depths of her purse. 

Which is how I ended up at a conference with my pant leg hitched up to my hip, asking an almost-stranger to tape down the edges of my medical device. 

But this stuff?  Works.  Like proverbial gangbusters.  That Dexcom sensor was on its second-to-last day, and it made it another nine days before the results started to wonk out on me.  (NO I am not advocating that you restart your sensors and try to get more life out of them.  I'm simply saying that the tape helps keep your sensor stuck firmly for seven days.  I just happened to get mad lazy with this one and left it on longer than recommended.  YDMV.)

I mentioned this stuff on Twitter the day after I returned home, but I keep getting the name wrong.  "Optiflex?  Opflex?  Optimus Prime Flex?"  For the record, it's Opsite Flexifix tape:

Behold!  The magical tape!

I ordered mine from Amazon, and when it arrived, it was in a nice, little tight roll (not this kind of tight roll) with a light green grid on the outside of the tape.  My current Dexcom sensor is on its third day, so I thought I'd slap a little tape on it.  I rolled out a short length (enough to cover the sensor edges fully) and cut out a center square (Jim! J! Bullock!) to accommodate the transmitter:

Cutting out that center bit is a little complicated, but small scissors do help.

On one side of the tape, it says "REMOVE FIRST."  I can take a hint; so I pulled that side of the tape off first and stuck it to my thigh (around the sensor). 

Sensor with the Optimus Prime tape around it.

Then I pulled the grid layer off, which left a flexible, bandaid-esque cover (cover band?) over my entire sensor.  It was a little clumsy for me to put on, because the tape is super-sticky and trying to settle it down is like keeping a length of saran wrap from getting all lumpy.  But now it's on, and I don't feel it or notice it, and hopefully it will keep the sensor stuck fully and happily.

Opsite Flexifix didn't ask me to write about this.  They didn't send me free stuff (but if they'd like to credit my Amazon account so I can buy more ribbons for the baby's hair, that would be badass), and they have no idea I've mentioned their product on my site.  But I had to:  that one good turn in San Diego deserved another.  And this Optimus Prime tape stuff rules.

[Dexcom disclosure]

October 19, 2011

From Abby: The Diabetes/Sleep Equation.

Sleep.  It is the thing I covet most, especially when I work late into the night and Birdy starts chirping oh-so-early in the morning.  Sleep is a luxury when there's a little one trolling around your house, but when diabetes is the cause of my sleepless nights, it's less cute and more frustrating.

Seems like I'm not the only one battling it out on the overnights.  Take it away, Abby!

*   *   *

"Chicken or egg, people."  My favorite line from this whole post.  :) - Kerri.Ever have those nights when you sleep like a zombie, and wake up to a CGM graph that was firmly planted between 110 mg/dL and 120 mg/dL the entire night, or a fingerstick that shows a fancy 100 mg/dL?

Yeah.  Until last week, I can't remember the last one I had either. Steady diabetes nights are one of those like, super mysterious only-heard-about-in-commercials kind of nights.  That steady graph or fingerstick lets you just sit in your bed an extra 30 seconds and think, "Heck yeah."

So anyway, this happened to me recently and of course I Tweeted about it (because despite my best efforts, I have been completely sucked into the Twitterverse).  [Editor's note:  HA!  Mission accomplished.]  My reaction to this straight line and rested feeling, after the initial, "I'm freeking awesome" was "Wait.. did I sleep so well because of the stable blood sugars, or was my sugar so stable because I was sleeping like a log?"

Chicken or egg, people; I was boggled. A few Twitter friends responded. One said that he attributed the stability of blood sugars to the good sleep. Another friend said she was also as clueless, but equally as thankful.

Add in the fact that I got about five hours of sleep the night before, and the fact that I haven't slept through the night my entire life unmedicated (there was that week I don't remember after getting my tonsils out, but that's a whole different story) - I don't know what to attribute this success to.  Did I accurately carb count that pizza-feast I had for dinner, added to my perfect basal rates, mixed with some sleep deprivation ... does that all adds up to this win of a night?  Or was it complete luck? Did my body need a solid night's sleep so badly that it overrode my diabetes' intentions and just let me sleep?  (And, if so, how did it do that?  Can it even do that??)

The world may never know, but I hope I can someday experience another slumber so sweet.

... pun intended.

*   *   *

Do you sleep well when your diabetes is under steady control, or is your diabetes under steady control because you sleep well?  How much does a good night's sleep play into your control the next day?  For me, it's a combo deal, leaving my mental chicken AND eggs ... fried.  (Sorry.  Couldn't resist that one.)

Guest Post: The College Diabetes Network.

ChristinaWhat would have made college easier for me, diabetes-wise?  Having the diabetes online community.  Unfortunately, at that point in my life, I didn't really know anyone else who had diabetes, so I was a health soloist instead of part of this incredible, chronic choir.  

Christina Roth, founder of the College Diabetes Network, has created what I wish had been there for me.  And today, she's taking some time to share her story, and to encourage others to get connected.

SUM: What gave you the idea to start CDN? 

Christina: Having been diagnosed at the age of 14, in the midst of those rebellious teenage years, I wanted nothing to do with diabetes in high school. It wasn’t until college that I felt ready to connect with other people with diabetes, but when I reached out to other students I found that there was no way to connect with anyone. I had met a nurse practitioner at our university health services who had had diabetes for 30 years before getting a pancreatic transplant. Before meeting her I had never talked with another diabetic, I had never experienced anything like it, it was freeing. We started talking about how great it would be to connect all of the diabetics on campus, as she saw several of them as patients and thought that they would also benefit from connecting. At the time, I had also heard about a group that a few students at Harvard had tried to start several years before, but found all of the links and information on their webpage to be out of date.

So we decided to start a group on campus, but in order to get information out about the group, I realized we needed a website that we could refer people to. Over my winter break that year I met with a webdesigner and put together the website. All of the information was specific to UMass, as at that point the thought of this being any more than a UMass student group had never crossed my mind, nor would I have ever believed it to be possible.

We were able to get information out about CDN by referring people to the website and had our first meeting at the beginning of the Spring semester. We had booked the room for about 1-1 ½ hours and ended up all staying and talking for over 3.

When I started receiving emails asking how students could start similar groups on their campuses, I decided that we needed to make this information available, and of course expand the website so that each school would have a page, as it was such a key part of our success at UMass. From there everything just kind of snowballed into what it is now. We added several new chapters, completely redesigned and relaunched the website, and got our 501c3 status from the IRS. I’m not quite sure how it happened…but CDN has become my full-time job (in addition to my real-life full time job…), as well as my passion. Although we didn’t start out to create a national organization for students, I feel that the grassroots way in which we have come into being is what makes us so successful. CDN knows the support and resources that are needed by students because the organization was created by students and is run by students.

There are many people, who without their expertise and willingness to help and donate their time, CDN would not exist (and I would have lost my mind a long time ago!).

Click here to visit the CDN website.

SUM:  Do you plan on extending to more schools? 

Christina:  We are always looking to expand and create chapters at new schools, or to register existing student groups. We currently have about 20 chapters, all randomly located throughout the country. CDN provides the resources for these groups to get started and to succeed, but the groups themselves are run by students on campus and are based around the needs and desires of their members. Through my own experience with CDN at UMass, it is the peer support and the friendships that the group fosters that empowers and motivates people.

SUM:  I see you have a “students” section as well as a “parents” section which is an incredibly important aspect of PWD going away to college. Do you get a lot of parent activity with CDN?  Do the parents ask questions that you try and find resources/answers for?

Christina:  Our parent section was added because of the discussions that came up in some of the meetings that we had at UMass. I actually worked very closely with my mom, using her own personal experiences, to set up the original information and tips that went in that section of the site. As the organization has grown, we are expanding the resources available for parents. The most exciting of which, in my opinion, is an online networking community where they can connect with other parents of college students to help support one another. We are working with the Diabetes Hands Foundation through TuDiabetes to set up this exciting new addition.

As word has spread about CDN, I have received many emails and phone calls from nervous parents. These parents are mainly seeking reassurance and want to know how they can help to keep their child safe. Speaking with these parents is a big reason why we are expanding the resources for parents, as it has made it apparent that there is a bigger need than we had expected.

A few weeks ago I was actually at the Boston ADA Youth Leader Summit, which is the annual kick off event for this amazing program for teens. At the event, CDN held a focus group for parents, where we collected information about the fears and needs of parents whose children will be leaving high school and entering college. The information from events like this and feedback from parents are helping us to design our resources to match these needs.
    
SUM:  What do you think are the most important aspects of being involved with CDN, as a student or a parent?

Christina:  I think that the most important aspects of CDN, for both students and parents, are the community we create through our in-person and online resources, and the access to information that the CDN website provides. Our website helps to connect people to information relevant to their lives and their health, and our communities help provide the motivation and support to use that information.

SUM:  If a student wants to start a group at their college, how would they get going?

Christina:  If as student wants to start a group it is very easy, simply email us at croth@collegediabetesnetwork.org and we will create a webpage and a CDN email address for their chapter. We then help walk them through the steps to creating and setting up their group, from reaching out to other students, to registering as a student organization on campus, we provide the support and resources to make this process as easy as possible.

SUM: What's next for you guys? 


Christina:  We are currently working on several projects, most of which are aimed at improving the delivery of our resources and further establishing the information to better enable us to carry out our mission. As we were started when I was in college, we have had to generate our own funding through grassroots sources and have subsisted solely off of time dedicated by volunteers. We are working on securing funding and expanding our leadership which will enable us to progress to the “next level” as an organization.

SUM:  Thank you, Christina, for helping connect people with diabetes in a way that has impacted so many!  You are amazing, and we're excited to see the College Diabetes Network achieve that next level!

*   *   *

Christina was diagnosed with Type 1 diabetes when she was 14 years old and grew up near Boston, MA. She attended the University of Massachusetts Amherst where she earned her degree in psychology and started the College Diabetes Network (CDN).

You can find more information about CDN here:
Website: www.CollegeDiabetesNetwork.org
Facebook: College Diabetes Network
Twitter: @CollegeDiabetes

October 18, 2011

Get Your Blue On.

November is Diabetes Month, and Cherise is asking us to rock blue on Fridays. 

From the Blue Fridays Facebook page:  "Blue Fridays is an initiative to bring attention to World Diabetes Day, and to advocate and bring awareness for diabetes and the people living with it. Diabetes is more than a national issue; it's a world epidemic. This year, I want to rally the diabetes community to celebrate World Diabetes Day and Diabetes Awareness Month by asking people to wear blue every Friday during the Month of November and on World Diabetes Day (November 14). Please help spread the word"

Need a little visual encouragement?  Got it:

WEAR BLUE!!

Eighteen.

Birdzone,

Oh you strange little Bird, you are eighteen months old and you have found sentences.  And you aren't afraid to use them.  Last week, you busted out with "I do!" as your first affirmation, and now you toddle around the house on your tiptoes, sounding like a walking wedding vow.

"I do!"

"You do?  Do you love Daddy?"

"I do!"

"Do you love Mama?"

"I do!"

"Do you want to take a nap?"

".... no."

(See?  You know exactly what it means.)

You've also found words.  Lots of them, and it seems like your vocabulary doubles every day.  You have a lot to say, and even when you don't know how to say the words, you know what they mean.  "Swim!" means you lay down in the bathtub and kick your feet until water splashes onto the floor.  "Kick your feet!" while you're on the swing in the backyard means you kick so hard, alternating your legs, so that you look like an aerial can-can dancer.  And when you sniff flowers of any kind, it's less of a "sniffing in" and more of a violent "blowing out."  We try hard not to laugh at you, but it can be a challenge at times.

"Sniffing" the flowers.
Snarfing up all the flowers

And you have found silliness.  In the last few weeks, you've started laughing at silly things on television, or when Mommy and Daddy make faces or say goofy things.  Instead of responding to our smiles or our tickles, you actually get the joke.  You know that the colander on your head is silly.  You know that pretending to brush your nose instead of your teeth is funny.  And you know that when we make the stuffed animals burp, it's comedic gold.  You're a total goofball, and that's an inherited trait.  From your father.  And ::coughs:: your mama, too.


Petting a giant, metal pumpkin

When you were much littler, we, as your parents, did most of the entertaining for you.  We danced, we sang, and we read you books.  But now, you're the entertainer.  You bust out with these strange little dances and funny little tunes, shaking your head and your shoulders at the hint of any kind of music (you really love Beyonce and the Beastie Boys, and some old school U2 from Boy), and trying to make out with any Elmo doll or t-shirt that will stand still for more than five seconds.  (Dude, you totally love Elmo.  I can't, for the very life of me, imagine where you picked that up from.  Whoops.)

Birdy and "Melmo."
We ask her, "Where's Elmo?" and she points at her shirt. Then we ask her "Where's Birdy?"
And she points at her shirt. Then she gets all confused, like she ate Elmo.

You continue to amaze and confuse me on a daily basis.  Just when I think I have something figured out, you either change it or try to eat it.  (That's fun.)  Your day is one, giant, exhausting cycle of running around and playing and singing and eating and trying to lick my laptop and pretending to be a doggy or a kitty or an elephant, and sometimes I just watch you and wonder if you're sneaking sips of my coffee. 

But at night, when you want to snuggle up in my arms and read a book, and you smell like Aveeno baby shampoo and your curls tickle my cheek, I wrap you up and try to make the moments last just a little longer.  You're getting so big, so quickly, and even though I keep asking you to slow down, you just. keep. running.

"Does Mommy love you?"

"I do!!"

You bet I do.

Love,
Mommy

October 17, 2011

To Palooze.

to palooze: v. the act of people with malfunctioning pancrei and their caregivers coming together for cupcakes, support, and fun

In the last few weeks, I've had the pleasure of meeting some old friends for the first time.  (That may sound like a peculiar sentence, but anyone who is part of the diabetes community and has found themselves immersed in a deep discussion about the emotional impact of this disease with an otherwise complete stranger understands the connection between PWD.) 

A few weeks ago, in Boston, I had dinner with Harry Thompson.  (He's @harrythompson on Twitter.)  Our diabetes is about the same age, and our daughters are, too.  Our spouses are supportive and amazing, and our collective appreciation for a good pun is unparalleled.  We spent a few hours exploring Boston and the North End, and we drank cappuccinos made from an old-fashioned coffee robot.  (More on that some other time, because if I try to explain it here, I'm sure to become confused again.)  But it wasn't weird ... it was comfortable, despite the fact that we hadn't met in person until that night.  Harry is awesome, in every freaking way.  (No photo, though, which I'm regretting.  We just forgot!)

And over this past weekend, I trekked into New York City with Briley and Karen to meet up with Simon and a whole pile of other PWD for what's become this strange Simponpalooza phenomenon.  It's hard to explain how and why people with diabetes forge a friendship that's instant and lifelong, despite differences.  It's harder still to explain to people why a man would want to fly halfway around the world to meet a bunch of strangers. 

But when you see photos, and read people's posts, and see videos, and take into account how much love is found in a disease that hurts so much sometimes, it makes more sense. 

I love that he has, like, a LOGO.
The "tour book," which served kind of as a yearbook for Simon's trip to NYC


Kerri, Jeff, and Briley, and Jeff OWNS this shot.  Owns it.


MOST of the group (because Kelly came running in seconds after the shutter clicked)

Kerri and Simon.  Simon says, "Look happy!"
"Simon says ... be happy!"

Actually, it makes perfect sense.

Thanks for coming to spend time with us, Simon.  And thank you to everyone who writes about the friendships found in the diabetes community.  Diabetes isn't exactly known for "giving back," but the community of people who live with it are

(More photos on Flickr here.)

October 16, 2011

Snapshots: Pump'kin.

No, I didn't waste an infusion set, silly.  I ripped this one out of myself and then stuck it into a pumpkin.  Sanitary!!

What do you mean, you don't know which one is mine?

October 14, 2011

Diabetes Sisters: Pearls of Wisdom.

At the Diabetes Sisters conference last weekend, the theme seemed to be "pearls of wisdom," and sharing those moments with others in the "sisterhood of diabetes."  I loved this workshop moment, because regardless of how long you've been living with or caring for someone living with diabetes, you've learned something.  That's something that I'm reminded of everyday:  it's impossible to know it all.  The learning curve for life with diabetes is steep and constant, but sharing our stories and leaning on one another helps make the tougher moments easier to manage. 

Here are a few of my favorite "pearls" from the conference:

I love this one.

And this one ...

And this one.  :)

Looking at this whole table of wisdom inspired the hell out of me, and confirmed, yet again, that I'm not alone with any of this.  Do you have a pearl of wisdom about life with diabetes?  Share it!  

[Disclosure:  I was asked to attend the conference by the team at Animas, and they paid my travel, lodging, and expenses.  Full details on my relationship with Animas here.  And lastly, do you start your day with a bowl of Sugar Frosted Fat?]

October 13, 2011

Transforming Diabetes: Hanging Out with Heather.

:)Heather Clute, one of the hosts of the Transforming Diabetes podcast, describes herself as "living well (but not perfectly) with type 1 diabetes since 1997."  I love that.  I love that she recognizes the impossibility of perfection, but appreciates the fact that life can still be awesome after a diabetes diagnosis. 

And I also really respect the mission of their organization:  "Transforming Diabetes invites listeners who have diabetes, love someone with diabetes, or simply care about the issues around this epidemic to join in our community of inspiration.  We are creating connections around living well in spite of – or even because of – diabetes.  We hope to turn the 'S-Word' of scare in diabetes into great self-care, self-responsibility, and personal empowerment.  Let’s turn the table on those scary statistics, and take the diagnosis from challenge to opportunity!"

And I'm honored to have been a guest on the Transforming Diabetes podcast earlier this week, talking about the Diabetes Sisters conference, how diabetes meet-ups are like "grown up diabetes camp," and the power of positive influences in the diabetes community.  You can check out the podcast by clicking this link (which will take you to their blog) or by downloading the streaming podcast here

(I apologize for my excessive giggling.  I don't know what got into me.)

From Abby: Clinical Trails.

It's like a Paas egg coloring kit, no?

Abby tackles clinical trials and that feeling of "catch-22" in today's post, and this is an issue that's very top-of-mind for me.  I wrote an article about clinical trials in the latest issue of diaTribe, and I share a lot of Abby's concerns. 

*   *   *

A few weeks ago, the Twitter chat #dsma topic was about clinical trials.  There is and was a lot of conflict about this topic - online and in my mind.  Last summer a few of us at Clara Barton Camp looked into participating in the Closed-Loop-System trial at MGH. It was something we fully believed in and seemed easy enough to help with. I personally couldn't do it because I was still in nursing school in NY at the time and didn't have a schedule flexible enough to spend the amount of time necessary in Boston for the trial.  I know that another staff member at camp got through the blood test portion of the trial but found out she was still making a small amount of her own insulin, and was unable to further participate.

Clinical trials are a vital step in the process to approve new technology, medication, therapies - pretty much anything - through the FDA. I fully support the trial process (it's the scientist in me), I understand why it takes so long and I'm quite comfortable waiting for the FDA to be very, VERY sure that this product or system they're approving is safe for me.  I know that every trial needs a lot of people to test on. I'm also more than willing to be that person... in certain cases.

I've been looking at trials for a few years now, on and off. Now that I'm living near a lot of the hospitals that are conducting the trials I'm looking into them more seriously and more in depth.  There are trials for everything - from using asthma inhalers to raise blood sugar, to getting a full medical history of PWD to track disease process, to taking experimental medications.  I know it's selfish, but I'm definitely not going to ingest, inject, or inhale any medication that hasn't previously been FDA approved or that could harm me or change my health in the future. I'm young, I'm healthy, and I have a lot of plans for my body in the future.  That being said I know someone has to try these new things to find what works.

It's a catch 22, I guess. They need "me", and "I" want them to cure us, but "I" am not willing to try some of their methods. The question is, I suppose, who will? I think about this a lot, and I haven't changed my mind, but it is for sure something that pulls on my moral heart-strings.

For now though, I'll stick to applying to trials that won't permanently change me or my body, and trials that I believe can make our lives better. Not just for me, but for all of you out there, and all of the people who have yet to be diagnosed. 

*   *   *

Have you participated in clinical trials?  Why or why not?

October 12, 2011

Guest Post: World Diabetes Postcard Exchange.

Lee Ann Thill is the DOC's resident art therapist, and her work is just as important as insulin, in my opinion, because it feeds the soul.  Today, she's guest posting about the World Diabetes Postcard Exchange, and if you want to get involved, the details are below!  Let's rally for Real Mail with a diabetes twist!

*   *   *

My love of Real Mail started when I was young.  I loved getting cards and letters from my grandmothers, but it was the letters from my diabetes camp friends that made me step off the school bus and run home to check the mail.  Before the World Wide Web, it was Camp Sweeney and all the friends I made at camp that made me feel less alone.  During the school year when I wasn’t at camp, it was the letters I exchanged with those beloved friends that always gave me a reprieve from feeling different, letters filled with love and kindness, not just in the handwritten words, but in the time and effort it took to compose and send them.

These days, if you’re like me, you probably don’t get a lot of Real Mail.  You get bills, you get enough junk mail to wallpaper your entire home with enough left over to never have to buy toilet paper again… if only junk mail was less abrasive and more absorbent.  I’m just as guilty as anyone of abandoning the art of letter writing in favor of emails, Facebook, Twitter, and oh, right, blogging, as a means of staying connected to people.  Thanks to those means of communication, I have more friends than I ever imagined, and I can stay updated on what’s happening in their lives and how they’re doing.  I’d be the last to deny that the internet makes staying connected and updated very efficient.

AWESOME!

However, I still love Real Mail, and Real Mail with a diabetes twist is that much more special.  With fond memories of sending and receiving letters with my diabetes camp friends, and with the desire to do something for World Diabetes Day this year that transcended bricks and mortar, I’ve initiated the World Diabetes Postcard Exchange as a way for everyone to celebrate World Diabetes Day together, no matter where you live.  The World Diabetes Postcard Exchange is a means of connecting more people affected by diabetes to each other, and it’s an opportunity to get a little creative.  Here are the rules:
  1. Email your postal address to me: leeann@thebuttercompartment.com. If you would like to be matched with an adult, child or family, another type 1 or type 2, or if you are a type 3, spouse, sibling or parent, or other loved one, please indicate that. I will do my absolute best to match you with someone who is similar. If you don’t indicate any preference, your assigned recipient will be random in that regard, which isn’t necessarily a bad thing! I’m trying to match people who live far away from each other, but I can’t commit to specific geographic matching.  We’re sending old-school post office-delivered postcards, so I need your snail mail address.

  2. Expect to receive an email with the name and address of your postcard recipient. I expect to get those emails out around the end of this week.

  3. Use the WDD Blue Circle and all the creativity you can fit on a 3.5”x5” piece of heavy paper, cardstock, or paperboard.  I want the creative part to be as easy as possible, so check The Butter Compartment over the next couple of weeks for posts with simple ideas and inspiration for making your postcard.  

  4. On the back of the postcard, complete this mini D meme, in addition to anything else you’d like to share with your recipient, like URL or twitter handle:
    • Your name:

    • Where you live:

    • Your connection to diabetes:

    • Type of diabetes:
Year of diagnosis:

    • One thing you do to Act On Diabetes:

    • One Word:
  5. Mail it, ideally in time for the recipient to receive it by November 14th. If you’re unable to do that, please at least have it postmarked by then.

  6. Check your mailbox for a postcard from the person who was assigned your name and address.

  7. If you like, post a photo of the postcard you receive on the World Diabetes Day Postcard Exchange Facebook page.

Since this project was announced last week, we have over 150 participants, mostly from the US, but a few from Canada, Europe, Australia, and even South Africa.  I’m hoping that this week will bring many more participants, and welcome any and all efforts to help spread the word.  My vision is of blue circle postcards spinning around the world, connecting each of us with another individual or family living with diabetes.  Email your snail mail address, start working on that postcard, and tell your friends to tell their friends with diabetes – help bring the world into this World Diabetes Day initiative!

*   *   *

I signed up.  Have you?

Cleaning Crews.

The urge to clean grabs me by the throat, and I find myself spritzing Clorox on the counter and rubbing frantically with a fistful of paper towels.  Once that task is accomplished,  I notice that the floor just below the refrigerator door is sticky with juice or something, so I kneel down and scrub that, too.  And then suddenly the fridge door needs a scrub down, and I should probably grab all the sweet potatoes that are growing actual faces there on the back shelf and I think there's a jar of minced garlic that's spilled somewhere in there and ...

... all while the Dexcom wails, shouting "LOW!!  KERRI!!  STOP FRIGGING CLEANING AND EAT SOMETHING!!!"

I look at the graph and see the double-down arrows, and confirm the low with my meter.  But it takes an awful lot of self-control to stop scrubbing and drink some grape juice.

Why am I struck with that urge to clean when I'm low?  I do not understand what it is about the Low Cleaning Crew that moves into my brain when the sugar apparently moves out, but they are a merry and manic mix of maids.  When my blood sugar is in the absolute trenches, I get these cleaning fits.  Emptying the dishwasher, folding laundry, picking up the piles of Bird toys that little the floor ... it's like the slow ebbing of glucose from my blood stream makes my body feel so disorganized and rattled that I search and destroy all external messes to level the proverbial playing field. 

(And I am clearly not alone in this affliction.  Scott posted about this the other day on Facebook, and the flood of comments was just enough to make my low blood sugar cleaning crews grab a mop.  This apparently happens to a lot of PWD ... so explain why my house isn't cleaner on a regular basis?)  

Usually, it's the beading of sweat on my forehead that makes me stop cleaning and acknowledge my blood sugar.  A lot of times, that cleaning fit comes with a frantically panicked mindset, where my brain is racing to think as many thoughts in as little time as possible, my hands shaking open a new garbage bag or sliding silverware into its place in the drawer organizer.

"Did you have a low?"  Chris asks, looking at the gleaming kitchen and the piles of folded clothes.

"How could you tell?"  I responded, wiping the glucose dust off the kitchen counter with a swipe of my sleeve.

"Wild guess." 

October 11, 2011

Mindfulness.

At the Diabetes Sisters conference, there was a lot of talk about mindfulness.  And it was a term thrown out constantly, with everyone nodding their heads, but I was sitting there thinking, "I have no idea what mindfulness is."

During one of the sessions, a definition of mindfulness was offered:  "It's moment-to-moment, non-judgmental awareness."  Okay.  "Being in the moment."  Gotcha.  "Appreciating the fruitfulness of the moment."  (I can't lie:  I do like anyone who uses the word "fruitfulness" while I'm eating a banana.  Game on.)

I wanted to harness this power of mindfulness, because it seemed like a really nice, calm place to be, mentally.  I thought I'd have a bit of a leg up on your average person, because living with a chronic illness heightens self-awareness in a lot of unique ways, so I figured I'd have mindfulness in the bag. 

Not quite.

There was a moment of guided meditation, during which the room full of people closed their eyes and were gently encouraged to let their mind wander where ever it wanted to, to focus on their posture and breathing, and to just find a centered place of relaxation.  When the brief exercise was over, one woman talked about not wanting to open her eyes and "return" to the room.

I couldn't confess that I didn't want to close my eyes in the first place.

One of my (many) problems is that I'm not good at relaxation.  Even if my body is relaxed, my mind is usually racing.  Kind of at all times.  Before I started working for myself, I threw myself into my jobs, and now that I'm self-employed, my work day is only briefly interrupted by sleep.  This doesn't bring me to a very zen-like place, but I don't mind terribly because I like being busy.  And an intimidating to do list makes the fire under me burn a bit brighter.  

(I think I unfortunately thrive on chaos.)

My zen-like place is behind a gigantic iron wall.  Of cortisol.  ;)

Which is why these discussions about mindfulness made me uncomfortable.  It's not that I didn't agree with what was being presented, or that the concept didn't resonate for me, but more that it's just not my kind of mentality.  I've tried yoga, and meditation, and other calming exercises, but what seems to make me feel calmest is either being on a beach with a book to read, or crossing another item off that to do list.  There's not much gray area for me.

There was a "mindful eating" focus that really stuck with me.  The point was to bring the focus back to slowing things down and being very aware of the moments we spend consuming food, instead of the standard shovel-haul so many of us employ.  I really appreciate the concept behind this, but I hadn't ever tried it before, so I didn't know how I'd actually feel about doing it.

We were told to take a small portion of trail mix and to select one item from our pile.  I grabbed a yellow M & M.  

And then it began an exercise in utilizing all the senses.  We were told to examine the item with our eyes, taking note of the shape, color, and visual texture.  Then we put the item in our mouth, but were asked not to chew it.  Instead, we were told to recognize the saliva in our mouths, and to run our tongue over the item.  Then we were told to chew the single item for a few seconds.  Then we were told to swallow.

For whatever reason, this mindful eating exercise completely skeeved me out.  I have a tendency to eat quickly, either to treat a low or in recognition of the brief moments I have while the Bird is napping, but I don't eat without appreciation.  However, I really didn't like taking three full minutes to consume one M & M.  By the time we were sanctioned for swallowing, I was grossed out.  Something about all that talk about saliva and rolling a single candy around in my mouth made me go "blargh." 

I wanted to achieve that mindfulness.  I wanted my brain to be less clouded by the fog of chaos I usually roll around in.  But all I could think was, "I never, ever want to eat an M & M again." 

I know I need to find more "down time" in my life, but I don't think I'm wired for mindfulness.  My zen-like place is somewhere ... but I haven't found it yet.

[Disclosure:  I was asked to attend the conference by the team at Animas, and they paid my travel, lodging, and expenses.  Full details on my relationship with Animas here. And this is what happens when you're too close to a cat.]

October 10, 2011

Diabetes Sisters: A Celebration of Strength.

For the last three days, I was out in San Diego for the Weekend for Women: Celebration of Strength conference, and throughout the course of my quick, two and a half day trip, I met so many inspiring women.  And I heard so many inspiring things.  

Brandy Barnes, creator of the Diabetes Sisters organization, opened the session by talking about dispelling some of the myths and misconceptions of life with all kinds of diabetes.  “Fight the mental battle of making our diabetes management a priority, while juggling the competing forces of jobs, family, friends … we have this all in common."  Everyone in the room was living with type 1, type 2, or LADA (and with one self-proclaimed "Type weird", Ms. Natalie Sera, who I had the pleasure of meeting and hugging).

Natalie rules.  And all of her dresses have pockets!

“Lets wrap our arms around them and help them feel like they are part of our sisterhood," Brandy said, encouraging those who have attended the conferences in the past to reach out to new attendees.  

That was the theme of the weekend - reaching out and being there.  There were many speakers (and I was very honored to be one of them, on a panel with some fellow insulin pumpers, talking about diabetes and technology), and their topics varied but their messages all contained the common thread of community.  

Susan Jung Guzman, Phd and Director of Clinical Services at the Behavioral Diabetes Institute, spoke about the diabetes juggling act.  She talked about how, if you sit in on an average diabetes education course, you will hear about over 155 recommended "things to change" in your life.  "Or at least 155 things, because we stopped counting after 155.  But really?  155?  That's three hours per DAY that diabetes eats up."

"All of you are diabetes jugglers.  Some of you are quite masterful.  And some of you are learning," she said in reference to all of the things we, as people with diabetes, are trying to manage in the course of our lives.  And without a lot of positive reinforcement.  "You bring your A1C down from 11% to 9%, and it isn't met with a 'Good for you!'  Instead, you hear about the things that can happen when your A1C is 9%."  She shook her head.  "There are 26 million  people with diabetes, but only 13% are managing to the established metabolic goals.  We're scolding people instead of offering them help, and hope."

I heard a lot of inspiring things over the course of the weekend, but one of my favorite quotes did come from Susan in that first session.  "We have a full spectrum of wellness in here," she said, smiling at the group of women with diabetes who were listening to her.  And I appreciated that focus on wellness instead of illness. 

The outdoor lunch on the patio, overlooking the water, was pretty nice.  :)

More on some of the other sessions later this week, including a mindful eating exercise involving an M&M.  Which I'm still wrapping my mind around.  :)

[Disclosure:  I was asked to attend the conference by the team at Animas, and they paid my travel, lodging, and expenses.  Full details on my relationship with Animas here.  Also, if you're interested, this is a really cool Rube Goldberg machine.]

October 07, 2011

Invisible Diabetes.

Today is No D-Day.  So instead, we had an I Can Haz Cheezburger moment with the Bird in the backyard. 

Exhibits A and B (but not D):

Invisible guitar ... rock out, girl!!!!

It almost looks freaking REAL. 

I'm off to San Diego for the Diabetes Sisters: A Celebration of Strength, where I plan to rock out on an invisible guitar for the majority of my trip. :)

October 06, 2011

Vlog: Interview with Charlie Kimball.

Charlie Kimball is one tolerant guy, because not only did he allow my child to sit in his racing helmet when she was two months old (risky move there, Charlie), but he also offered up some of his time to record a vlog interview about racing in Indy Car with type 1 diabetes ... and a car. 

And be sure to root for Charlie as he takes on his last race of the season next week, October 16th in Las Vegas, on his four year diabetes anniversary.  

(For more on Charlie, you can visit CharlieKimball.com or his personal Twitter account, @charliekimball.)

October 05, 2011

Toronto Type 1 Update.

I have a lot of travel scheduled for this fall, but one trip I'm particularly excited about is my first true Canadian Adventure ... aka the Toronto Annual Type 1 Diabetes Update.  Taking place on Saturday, November 19th at Mount Sinai Hospital in Toronto, it's a half-day party of diabetes information and exhibits. 

The last (and actually first) time I was in Toronto was for TIFF last year, and we didn't have a chance to see much of the city.  I'm excited to check out Toronto, and hopefully get together with some PWD locals, if you guys are around!

You can download the full PDF here.  And to RSVP for this event, you can call Robin Dales at 905-464-4939 or email rdales@itsjnj.com.  Should be a fun party - would love to see you there!!

October 04, 2011

New Dexcom Goals.

Before getting pregnant, I lowered my blood sugar range goals on the Dexcom because I wanted my standard deviation tightened up ... and also because I know that for me, beating back those high blood sugars is my biggest challenge. 

Even though we are not moving towards another pregnancy (hell to the no), I still want to regain the kind of preconception control.  For the last few months, I had my Dexcom goals set between 200 mg/dL and 60 mg/dL, and I recently lowered my high threshold to 180 mg/dL.  Not a big change, but enough of one to make me pay closer attention and to put in that extra effort.

Trying my best to hit the mark.  Or stay between the lines.  Whatever the right catch phrase is:  that.

This isn't a no-hitter, but it's close.  I'm not aiming for perfection, but just to feel a little bit better.  That still counts for something, right?

How About a Little Fondant with Your Pump?

When I opened the email from Kristie and saw this picture, I laughed out loud at the irony.  Her beautiful daughter, Ava, has type 1 diabetes and recently went on an insulin pump.  So when her tenth birthday rolled around and she asked for a birthday cake in the shape of her Ping, Katie made it happen. 

Estimated at 55 grams of carb.  PER SLICE.  :)

"Doesn't that fit the definition of irony?" Katie asked in her email. 

Between Ping cakes and Novolog cake pops, I think the Cake Boss has some stiff competition in the DOC.  :) Thanks for sharing your photo, Katie, and happy birthday to Ava!!

October 03, 2011

ePatient Connections: A Patient Checks In.

We are all patients, damnit.Two weeks ago, I attended my third year at Kru Research's ePatient Connections conference, and every year, I'm amazed at how many different industry people show up and showcase their impressive efforts ... but how few patients.  But this year, there were a lot of patients.  Lots as in "more than five." 

For a conference with "ePatient" in the title, it was good to finally see more than just a handful of ePatients in the audience.  (And this is thanks, largely in part, to the ePatient Bill of Rights project that took place on September 19th, across the hall from the SXSH event).  And it wasn't just a handful of diabetes patients - there were many health conditions well-represented at these events.  For me, it was nice to talk about the universal issues that people with chronic illnesses face, instead of drifting around in the bubble of diabetes.  I like stepping outside of our comfortable space and learning about what others are living with.  I need that exposure to other types of patients ... keeps me thinking globally. 

Part of the panel discussion I was co-leading, with my friend Jenni Prokopy of ChronicBabe, was about Partnering with Patient Opinion Leaders.  We ran our session on both days of the conference, with different panelists and health perspectives on each day.  (Including Ann Bartlett, Mark S. King, and Eileen Bailey, just to name a few.)  But the main point was to have conference attendees hear from patient advocates, and to be able to ask the questions they really wanted answers to.

The discussions ranged from "How can we get our brand into the social media space without offending people?" and "How do we join this conversation despite all the regulatory?" But the main point that kept being revisited, by fellow conference speakers and attendees alike, was that we are all patients.  That phrase was as ubiquitous as the term "epatient," only it meant more. 

Because we're all patients.  If you are enjoying good health, you are still on the mission to maintain your good health.  If you're dealing with a health condition, you're on a mission to regain your health, or to adjust to your new perception of health.  The definition of "health" varied from person to person, but the point remains:  we are all patients.

I think there's an important point to be made at these industry conferences.  We can talk about the latest cancer app for iPad.  We can talk about amazing technological advances that allow children to attend school from their sickbed (Hello, vGo the Carpathian).  But at the heart of this progress is the patient.  These things are developed to improve the health of patients, and to offer a higher quality of life to those who are dealing with health conditions.  Make the lives of patients better.  And the patient is all of us.  

[Disclosure:  I was invited to help organize the SXSH event and speak at the ePatient Connections conference independently, but my travel, lodging, and expenses were provided by Animas.  And I appreciate that. Full Animas disclosure for SUM is found here.] 

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