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June 30, 2009

GlucoStories: Everyone's Got One.

I'm a supporter getting the stories of people with diabetes out there for public consumption. Awareness and advocacy are the name of the game, for me.  We aren't perfect, we don't have all the answers, but we do know what it's like to live, every day, with diabetes.  

And now you can share your story and win a prize!  Here are the details, according to the info I received:

If you have diabetes, support someone with diabetes, or help the diabetes community, then tell us. Your story could win you a trip to Charlie Kimball’s Firestone Indy Lights Championship race in Florida October 8-10, 2009! (Or other great prizes!)

Entries deadline: Monday, July 6, 2009 Midnight (EST).  Enter at www.GlucoStories.com.

I'm pro-Charlie, as you know.  I think he's a great guy and I like his mission to help people with diabetes (and I'd also like to drive his car).  So when the folks at American Diabetes Wholesale (they're putting this contest on) asked me to help spread the word, I was more than happy to help - and I'll be serving as one of the contest judges, as well.  Also, according to the email I received from my buddy at ADW, "any funds that are received from this event will be donated entirely to JDRF."  I can't argue with that. 

So if you have a story to tell, you still have a few more days to enter to win! 

/public service announcement  :)

Penguin Truck.

We're planning for a pregnancy, so I've been working tirelessly to stalk my blood sugars.  I'm wearing the Dexcom, testing regularly, and really aggressively chasing highs and lows in pursuit of that nice "between the lines" look on my blood sugar graphs. 

So when I changed my infusion set last night and neglected to take the 1.0 u bolus in anticipation of the high (which seems to be the only way I can keep the highs at bay after a site change), I knew I was in trouble.  Sweaters on my teeth, and my tongue thick with dehydration, confirmed by the 254 mg/dl on my meter.  I cranked up a correction bolus and sent it cruising in, along with some frustration and a few choice curse words. 

A few hours later, I was on the steady but seemingly safe decline, with the Dexcom keeping tabs and my meter serving to confirm.  No worries.  I ate a snack (cottage cheese with some frozen raspberries) before bed and snuggled against the pillow (read: cat) at a blood sugar of 187 mg/dl.  Higher than normal, but I knew it would continue to come down.

Didn't anticpate the 3:30 am wake-up call of BEEEEEEEEEEP!, though. 

I have no idea what my blood sugar was.  The Dexcom showed me only as "low" and I woke up crying, for some reason.  Chris was next to me, fast asleep, but I didn't wake him up.  I don't know why.  A bottle of glucose tabs sat on the bedside table but I didn't reach for them.  I don't know why.  The shape of my body was outlined in sweat on the bedsheet and my hair was sticky, and for some reason combing my hair down before I went to get juice took priority over eating something to correct the low. 

I don't know why.

I don't remember a lot of this low, and that scares me.  I was dizzy.  I was stupid for not waking Chris up and asking for his help.  I remember hearing the Dexcom wailing from the bedroom as I stood at the fridge in the kitchen.  I drank the juice directly from the carton, drinking well past my eight sips and gulpinThese guys can just go right to hell.g until I couldn't catch my breath.  Yet, I remembered to wipe down the floor to clean up what I spilled.  I don't know why.

Hitting that stride, hugging close to the center lane of 100 mg/dl, is really what I'm aiming for.  I've been doing better lately, so every time I'm way off target, I feel the symptoms too late for lows and very intensely for highs.  I know this is a signal that I'm in tighter control, but once I'm stuck in the spin cycle of high-to-low-to-high and back again, it's hard to climb out.  And a lot of time my morning number sets the stage for the rest of my day.  Last night's low blood sugar left me at 199 mg/dl this morning, and I still haven't settled back into range.  I feel frustrated, knowing my A1C is being drawn at the end of July.  But last night's events kicked my ass too thoroughly for me to focus on anything other than muddling through the day.

It's that pesky penguin truck again.  I hope the tire tracks aren't too visible this morning.  

June 29, 2009

Guest Post: 500 Days of Diabetes.

After a hectic week with the conference in Philly and then Chris's great news, I need to spend some time today catching up on everything.  Thankfully, Jessica Phillips has offered to guest post today, writing about marking 500 days with type 1 diabetes.  She's come a long way, and I'm proud to host her words here on SUM.

Heeeeeeere's Jessica! 

*     *     *

As I was injecting myself with insulin on a lunch break at work, a co-worker walked by and exclaimed, “I couldJessica Phillips guest posts for SUM. never do that! EW! I hate needles!” Less than two years ago I might have agreed. I never had a strong phobia of needles, but that is not to say that I particularly liked them either. I was known in my childhood to run out of doctor’s offices into the parking lot at the first mention of “shot”. Now when I hear such a strong and callous remark to my now normal routine of insulin injections, I struggle with trying not to angrily reply, “Well you would have to give yourself shots if you had to in order to live!” or, “How do you think I feel? You think I want to do this?” I’ve learned as of late to simply smile and say, “It’s not easy.”

Reactions like this are commonplace for those of you who have experienced Type One Diabetes for many years, and even some for the majority of your life. For me, June 9th, 2009 marked my 500th day with type 1 diabetes. I was diagnosed in my hometown of San Diego, California on January 25th, 2008 at 26 years-old. For a couple months prior to diagnosis I had been experiencing the typical signs of hyperglycemia and a failing pancreas as I was constantly dehydrated, urinating, and tired. Being a college student and in a constant state of stress, I quickly attributed the majority of my symptoms, from dizziness to infections, to be solely related to my immune system’s battle with my constant stress. After many weeks of procrastinating, I finally urged my doctor to order a blood test. I went in to the lab on January 23rd and was called by my doctor 24 hours later while I was driving to school. The tone in her voice immediately caught my attention and set me in a state of alarm. She informed me that my blood sugar the day before was above 300 mg/dL and I was to avoid sugar and be referred to an endocrinologist immediately.

Luckily I was able to see an experienced endocrinologist the next day, and he diagnosed me with type 1 within minutes of being seated in the exam room. I was in complete shock, and felt confused, angry, and overwhelmingly sad all at the same time. I felt a struggle between trying to remain alert to the bombardment of information he was feeding me, and trying desperately not to cry. The doctor left the room to retrieve my new meter and insulin pens, and I lost it. Luckily I had some moral support with me, but I have never felt so alone and lost. I kept thinking, “how did this happen?” and, “what did I do wrong?” To have gone many years without having anything major occur medically, not even a broken bone, it was a major shock to hear I had something irreversibly wrong with me. I not only had something wrong, but I could not do anything to change it.

The next few days were extremely challenging to say the least. I was unable to give myself insulin and had to have someone else do it for me for the first couple days. I would sit and look at the needle and could not conceive of how this tiny piece of metal was going to go through my skin. I just kept thinking it was so wrong, and foreign. I also cried. A lot. And I researched online and in books so much that I felt as though I could speak at a lecture on the biology of diabetes. I found the knowledge empowering, and the more I grasped what my body was actually doing, and not doing, I became more confident in my ability to control my state.

Now, 500 days later, this diabetic routine is normal to me. I can hardly even remember a time when diabetes wasn’t on my mind. The memories have faded of when my blood sugar was not a concern, and when I was able to look at food as just food. The last year and a half has been a giant emotional roller coaster, full of ups and downs, but they have changed me. Sometimes I get the look of sympathy from others when I detail my hardships with this disease, anywhere from medical costs to just the simple annoyance of pricking myself all the time, and I have found myself realizing that although I would not choose to have this disease, I consider myself lucky. I am lucky of course to not have something worse, but having gone through this change has made me look at my life through a new and clearer lens. My bottom-line now is a cliché idea, but it is so true … life is short, and you only get one shot, so make it worth it, no matter what.

*     *     *

Thanks for sharing your story, Jessica.  (And for the record, Jessica is the one with the fantastic hair on the right in that photo.  Also for the record, I just realized that today is my 8,209th day with diabetes.  Holy crap, my pancreas is lazy.) 

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

June 25, 2009

A Sparling Sighting in Variety: Buried.

This morning's Variety article reads as follows:

"After starring with Sandra Bullock in romantic comedy "The Proposal," Ryan Reynolds has lined up a much grittier proposition for his next film.

Reynolds will star in "Buried," playing a civilian contractor who's kidnapped in Iraq and awakens buried in a coffin in the desert, armed only with a cell phone, a candle and a knife.

Rodrigo Cortes will direct a script by Chris Sparling; production will begin this month in Barcelona.

Peter Safran will produce through his Safran Co. banner with Adrian Guerra of Spain-based Versus Entertainment, which is financing the film. The picture will shoot entirely in Spain, which is home to Cortes, best known for directing "The Contestant."

Reynolds takes the job after the showy role of Deadpool in "X-Men Origins: Wolverine" and "The Proposal."

He decided to go the indie route as a way to stretch his acting chops in a movie with a claustrophobic premise, and one in which he holds the screen through most of the picture.

Reynolds, the writer and director are repped by UTA."

Wait a second ... is that a Sparling in there? 

Oh indeed it is!!!  That's a Chris Sparling right in there!!! 

I am so, so proud to announce news that I've been itching to share for a while now.  Chris's script, "Buried," is being made into a movie this summer.  In Spain.  Starring Ryan Reynolds.  More details to come here in a few weeks, but for now I remain a very proud Sparling.

Thanks for being part of not only the diabetes journey here, guys, but the life one.  I'm really happy to be able to share this news with you all!!

June 24, 2009

Why I Wanted a CGM.

On my soapbox again.  Hello!I'm often asked about why I chose the Dexcom CGM over the Minimed, and I have plenty of posts here on SUM that talk about my experiences with the two devices:

And then fighting for insurance:

And after I had won insurance approval, Dexcom and I joined forces:

Phew!  But part of even starting this process was wanting to go on a CGM to begin with.  I'm often asked about the different continuos glucose devices and pros and cons of each, I get just as many questions as simple as this:  "What made you ready to go on a CGM in the first place?" 

I know that for going from injections to pump therapy, I was frustrated with the lows that were happening three times a week, and how my ex-boyfriend was constantly finding me motionless in the bed at 4 am, covered with sweat.  After 17 years of injections and after two years of an A1C that wouldn't budge, I made the decision to use an insulin pump.

After deciding to wear one medical device, it was easier to try another one.  A few years of pumping made me feel comfortable with the 24/7 attachment of a diabetes device, so when the continuous glucose monitors became more prevalent on the scene, my interest was piqued.  At the time, I was in a serious relationship, thinking about having children in the future, and realizing how my blood sugars still weren't running better, despite my increased education and effort.  It was time to try something a bit different.

With a CGM of any kind, there's a certain security that comes with it.  I feel more confident speaking at events when I can look at the graph on my CGM and see that I'm holding steady.  Same for getting in the car for long drives, or on a plane for a few hours.  After twenty plus years of only having snapshots of what my numbers were like, I now have access to the streaming video, so to speak, of continuous monitoring.

Yes, there's also the "Hey, you're a robot" component to this.  I can't lie.  When I look at my body and I see all these things stuck to me, in addition to the red dots of diabetes devices past, I feel a little overwhelmed.  But it's part of living with this disease. (Most of the time, I'm able to shake off the robot feeling and just let Chris call me Rosie.  Whoops - there's the digression.)  I actually feel okay with wearing two medical devices.  It's sometimes cumbersome and inconvenient, but for me, the pros outweight any cons.  I hear a lot of bad news about diabetes, about how this many years with type 1 can really cause a landslide of issues, about how life can be compromised.  And I don't want that. 

Regardless of what happens in my future, I want to make every effort to be as healthy as I can, both mentally and physically.  And I'm ready to keep trying.  That's why I blog.  That's why I raise awareness.  That's why I pump. 

And that's why I wanted a CGM.

June 23, 2009

Channeling Grammie.

I can't ever buy apples again.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.  

June 22, 2009

Flu'd Out and Father's Day.

The end of last week was a bit of a bust, because I spent the majority of Thursday and Friday hiding in my bed with the flu. (Not the swine variety, though.  According to my doctor, "just the flu.")  I haven't read many blogs, I haven't answered any emails, and the only thing I've done is devour the first 3/4 of the Twilight book.

Note:  I kind of resisted reading Twilight because of all the swoony buzz over Robert Pattinson and vampires and all that stuff.  I'll admit it - I scoffed.  But then I remembered how rabid I was over the Harry Potter series, despite my best intentions.  And then my mother happened to drop the book off at my house.  And then I happened to get sick and have little energy for anything other than napping and reading.  This perfect storm of events now has me itching to get home so I can finish the book and pick up the next one in the series.  Sigh.  I'm a nerd.  A nerd who has digressed.  Hang on ...

I was on the mend by Saturday afternoon, thankfully in time to celebrate Batman's 30th birthday with her at the Ivy Restaurant in Boston.  (After some wicked traffic on 95 North in MA, leaving us almost two hours late for the event, but getting into Boston was worth it.  I love Boston.  And also, the birthday girl was stuck in the same traffic, so at least we were there before her!)

The carousel horses.

And on Sunday, Chris and I spent time with my father for Father's Day.  We don't often have the chance to hang out with my dad, so having a leisurely lunch (steaks and burgers - manly food!) and then some black raspberry ice cream from St. Claire's Annex in Watch Hill before our drive home to CT was a very nice, relaxing way to spend the day.

So what have I missed?  (And also, did you know that Sara actually has a paper chain counting down the days to FFL?  Go see ...)

June 19, 2009

Some Diabetes Advocacy Goodies.

Some bits and pieces that I wanted to get out as soon as possible, seeing as how I've been under the weather for a few days and falling wicked behind on just about everything.  Here are some diabetes advocacy bits I've been meaning to share!

SUM flower images.The NYC support group I visited a few weeks ago has outgrown its Tuesday meetings and is now spilling over into a third meeting, at the end of each month at The Cure Thrift Shop.  If you are in the NYC area and you have next Thursday free, here are the details:

First meeting: Thursday, June 25th, 7:30PM-9PM
Meets every last Thursday of the month
Meeting location:  Cure Thrift Shop
111 East 12th Street (btwn 3rd and 4th aves),
New York, NY 10003
No cost or commitment.  All adults with T 1 diabetes welcome, newly diagnosed or old D veterans.  Get in touch to let them know you're interested/RSVP to: support@act1diabetes.org

I will not be able to make the first meeting (will be in Philadelphia for a conference) but if you are able to meet this fantastic group of women, I HIGHLY suggest you do just that.

SUM flower images.Next on tap is some news I received from the JDRF about their fabulous Children's Congress. According to the press release,  "Some 150 children and teenagers throughout the U.S., and several from around the world have been selected to travel to Washington, D.C. this summer to represent their state and country and remind Congress and the Administration of the critical need to find a cure for a disease they live with every day— type 1 (or juvenile) diabetes.

These children—ages 4 to 17, representing all 50 states and the District of Columbia, and all diagnosed with type 1 diabetes—will converge on Washington, D.C., to tell their stories and urge lawmakers to help find a cure during the Juvenile Diabetes Research Foundation’s Children’s Congress 2009, from June 22 to 24." 

Also part of this Congress is Nick Jonas (OMG he is so hot ... if you're 15), who will be testifying to request federal funding for diabetes research.  With Nick will be Mary Tyler Moore and Sugar Ray Leonard, locking it down for diabetes research.  This is a very cool event indeed.

SUM flower images.And lastly, as I mentioned before, I'll be in Philadelphia on June 24th - 26th for a conference, then hanging out with some members of the diabetes community.  If you are local to the Philly area and would like to join us for a diabetes meet-up on Thursday night, please email me at kerri (at) sixuntilme (dot) com (with the subject line "Philly").  Would LOVE to have you join us, if you can! 

That's all I have for the moment.  More stuff coming later, as I sift through emails.  :)

Sick Day.

Blargh.  Sick.The weather - I'm under it.

I've been trying to work through some kind of flu for the last two days (hopefully not the piggy kind), so I'm taking today as a sick day.

Going to the doctor later this morning and spending the rest of the day hiding in bed.  Most likely covered in cats.  (I think this may be the cat flu? Sigh.  I'll be more clever next week.)

See you Monday!

June 18, 2009

Working On Working Out.

Way overdue on a new vlog post, but I was inspired by George's post yesterday about getting back on track with exercise.  So here's my vlog post about diabetes, working out, and what motivates me to move.

Some of my reasons are a little goofy, but I think whatever gets me to exercise is well worth laughing at myself a little bit.  What gets you to break a sweat?

June 17, 2009

Magic Beans.

Lows are The Suck.  I am not a fan.

The pear ones are the best.

But if I could treat every low blood sugar with Jelly Belly jelly beans, it would almost be okay.

(The pear ones are my favorite and even when I'm low, I save them for last.)

That is all.

June 16, 2009

Do I Have the Right?

Over the weekend, Chris and I (and his sister and dad) ended up in a harborside restaurant in South County, RI.  We stood in line and read the chalkboard menu until it was our turn to order from the girl behind the counter.

"What can I get for you?"

"Can I have an iced coffee?  Do you have iced hazelnut?"

"I'm sorry - we don't have hazelnut.  But we have snickerdoodle or french vanilla.  Either of those work for you?"

"Snickerdoodle sounds awesome.  Is that a syrup?  Is it sugar-free?"

She gave me just a quick look.  Not judging, just looking.  "It's definitely sugar-free.  Medium or large?"

"Large," I said, and she turned away to make my coffee and I saw the pink Animas pump clipped to the side of her black pants, the tubing sticking up all crazy. 

And instantly, I want to ask her a million questions. 

With the Dexcom and the Animas being integrated sometime "soon" and with my only pumping experience being with Minimed, I wanted to ask her how she liked the Animas.  I wanted to see how long she'd been diabetic and did she go to Joslin, too?  Did she know any other diabetics?  How long had she been pumping? 

I wanted to tell her that the tubing gets all crazy on my pump, too, sometimes. 

But do I have the right to make her diabetes my business?  Just because I write about it doesn't mean I have the right to grill her about her diabetes.  She wasn't asking me why I wanted to make sure the coffee was sugar-free.  She was just going about her business.  Did I have the right to poke into hers?  Just because she wears an "external symptom" of her diabetes in the form of that pink pump, did I have the right to ask her about it?

There have been a few times when a diabetes discussion was thrust on me without my invitation.  "Hey, what's that thing on your hip?" becomes this moment of advocacy that, while effective, wasn't what I wanted to do that day.  Sometimes I just want to order my coffee without being grilled about why I need to make sure the syrup is sugar-free.  Other times I'm blogging about the teeniest minutiae of life with diabetes.  I oscillate between wanting to be a diabetes advocate and someone who lives a quieter diabetes life.  Sometimes I don't want to talk about it at all.  That day, I didn't want to be an advocate.  (Or a pain in the ass.)  I just wanted to get some coffee and enjoy the day.

Maybe she doesn't want to talk about it, either. 

She made my coffee and added some cream.  I handed her my money. 

And I left without saying anything.

Do I have the right?

It's not always what we have to talk about.  There's way more to us than this. 

June 15, 2009

Old School Diabetes: Diagnosis.

I saw my niece over the weekend.  She just turned seven.  She had a bit of a fever and wasn't feeling very well, so when I saw her snuggled up on the couch under a blanket, she looked every bit the little kid she is.  Poor little peanut, hiding out until she felt better.

I remembered that I was about her age when I was diagnosed.

I found an old school photo from second grade, with me sitting next to my friend Bobby (who I still talk to, which is a very surreal experience, hanging out with someone I've known longer than I've known insulin injections).  I was diagnosed in September, right as second grade started.

Second grade, 1986.
I'm in the blue dress, second row from the bottom, third from the left.
Swinging my feet.  Not much for sitting still, even in second grade.

Over the last few days, I've been reading some emails from the CWD parents as they gear up for the Friends for Life conference in Orlando in a few weeks.  These emails are sent out to a whole mailing list of attendees, and somehow I ended up on the list with all the parents.  (Or maybe the list just happens to be mostly parents and I just happen to be an adult "kid" with diabetes.)  These parents are comparing notes and reaching out to one another, looking forward to other parents who understand what they're going through every day as they care for their kid with diabetes.

And I wish that my mother had this kind of support when she was dealing with my diagnosis over twenty years ago.  My mom had a lackluster team of doctors at the Rhode Island Hospital (where I went for a few months before going to Joslin) and Eleanor (the only other mother of a diabetic kid that we knew of in our town and the woman who just happens to be my local Dexcom rep), leaving her with little to manage the enormous learning curve.

This weekend, I went on a bike ride with my sister-in-law, my father-in-law, and my husband.  I had to remember to test beforehand, bring my meter, stash some glucose sources on several people, and monitor as re rode.  A lot of thought for maybe an hour long bike ride.  And it made me wonder what kind of preparation and worry my mother went through when she sent me out to play for a whole Saturday afternoon.  Lot of work on my mom's part just to keep things normal. 

I forget this sometimes, how many people are really involved in keeping me healthy. 

I need to call my mom. 

(Granted, my diabetes diagnosis hasn't kept me from doing much at all.  And it definitely didn't keep me from being ... um, a bit of a goofball.)

June 12, 2009

Community, Everywhere!

Earlier this week, dLifeTV did some filming for our upcoming new season.  And as part of a segment we're doing on online diabetes support, I had the chance to see Nicole Johnson again and to meet two members of the dLife community - Mark and Shauntaye.

Tune in to dLifeTV to catch these new shows!

We talked about our common experiences as people with diabetes, and how online communities have positively impacted our health.  I thought about all of us, writing our blogs and really sharing so much of our personal medical experiences, and how much this whole journey has helped improve my life with type 1 diabetes.  Our little community here has gotten so big.

I spent the better part of this week confirming travel arrangements for the next few months, and even though I'm not a very good (or calm) traveler, just knowing I'll have the chance to connect with more people who "get it" makes all the flight anxiety worth it.  I'm looking forward to visiting Philadelphia for a conference at the end of the month and hanging out with some fellow d-community members.  I cannot wait to go to Orlando in a few weeks and attend CWD's Friends for Life conference.  I'm excited for the Diabetes Summit in Indianapolis in July, and for the BlogHer event the next day in Chicago.  And I am so honored to be speaking at the BlogWorldExpo in Las Vegas in the fall.  Lots of travel for a cause I'm still so passionate about.

But damn ...  I'm going to need a bigger suitcase.  ;)

Since I started blogging four years ago, I've had the opportunity to meet many fellow diabetics, either through SUM or TuDiabetes or the JDRF or dLife.  We're a supportive and inspiring crew, and I'm really looking forward to meeting more of us "in person."

June 11, 2009

An Open Letter to Brett Michaels.

Idiot.Dear Brett Michaels,

Really?  Really?  I'm going to hope that you were misquoted.  I'm going to hope that maybe the reporter took your comments out of context and made you sound like an idiot, instead of you actually saying the following:

"Brett Michaels:  The only time it [diabetes] will ever affect you in bed is if you have extremely low blood sugar and you go into insulin shock, at which point you won't be standing up, let alone performing sex. However, I will sometimes hold off on the insulin, which will jack my blood sugar level up to the low 200 range. It's like how a prizefighter will want to go into the ring with his blood sugar levels high. It gives you the stamina of a bull. So, yes, sometimes I will endanger my own life to pleasure a woman."

(source:  Huffington Post

You dumb shit.  Brett, going low during sex is a pain.  I know.  I've had to stop for snacks, and I've had to stop entirely.  I've had discomfort and the inability to perform due to high blood sugars, too.  I've had sex while connected to my insulin pump, and I've also had to find ways to feel comfortable with sharing my diabetes with sexual partners.

But you, saying that you purposely run high "like how a prizefighter will go into the ring?"  Gives you "the stamina of a bull," you say?  You don't sound cool - you sound like a toolshed.  I was under the impression that high blood sugars are among the main reasons for sexual complications for diabetic men.  Are you hearing me, Mr. Michaels?  If you run purposely high, your manhood runs the risk of malfunction.  And stamina of a bull?  Pffft.

High blood sugars aren't steroids.  They're toxic and cause lethargy.  They are dangerous for a diabetic.  They make your breath smell like airplane glue, and telling a reporter that running high makes you shag like a rock star is a bit of a misleading statement.  (Are sure you're rocking these women as passionately as you claim?)

Dude, you are in the public eye.  You are among the very few celebrities who are living with type 1 diabetes.  I'm not saying you have to be Johnny Advocate, but don't spread misinformation.  Don't encourage some young guy to skip his injection in pursuit of being good in bed.  You know as well as I do that good diabetes control is what leads to strength and stamina.

You know better.

Or maybe you don't.

Best,
Kerri.

June 10, 2009

Blueberry Awesomeness.

There's stuff that's bolus-worthy.  New York style cheesecake.  Chai tea on a snowy winter day.  Wedding cake made out of red velvet with butter cream frosting.  These indulgences are worth draining my pump reservoir for, and almost worth the spike I try to, but don't always, avoid.

I've been very, very attentive to my diabetes lately.  Logging all these numbers, sporting the Dexcom, trying to manage stress levels, exercising ... whatever it takes to make me as healthy as I can be for the baby I want to have someday. But that wagon is hard to stay on all the time, and I have taken a risk or two in the last month.  Like a trip on the Connecticut Wine Trail with some friends.  And some pasta at Carmine's last weekend with my sister-in-law.  

Oh holy awesome.

And blueberry swirl cupcakes from Crumbs Bakery.

My diabetes control isn't made or broken in one bite of a fluffy, delicious cupcake.  Usually when I'm having a high sugar indulgence, I'm right on top of things, diabetes-wise.  I bolus aggressively to avoid the high and I watch that Dexcom like a hawk for any subsequent lows.  My management problems come more in the form of letting my numbers go untracked and pinging all over the place, letting highs creep up without corrections, then stacking boluses until I hit a nasty low, which I over-treat and rebound into a high ... you know the cycle.  It's not the "one thing" but more my inability to care for more than an hour or two.  The last few weeks of intensive management have been about keeping an eye on everything and not letting the cycle spin out of control. 

And it's hopefully working.  My machine averages are down, I'm seeing many hours straight of flat-lines on the CGM, and knowing my Joslin appointment is at the end of July keeps my mind on task.

Besides, it's not like I ate the whole cupcake.  I split it with Chris and I asked for the estimated carb count before I took a bite. 

But I did take the first, awkward bite. 

Whoops!  Cupcake!

And I did enjoy every other bite of it, too.  Go ahead and judge!  :)

June 09, 2009

Zombie Lows.

Weirdest dream.  Ever.The BEEEEEEEEP! woke me up from a dream about having my arm chewed off by a zombie that looked like Kevin James.  (Zombie dreams are common in my house, apparently.)

I wasn't sweaty and my skin didn't have that flushed, clammy feel, but my whole body was extra-sensitive and jittery.  Like being covered in sand, only every granule was touching a nerve.

For once, I didn't bother testing.  I knew I was low.  The Dexcom was howling from underneath the bedside table (where I must have lobbed it like a softball when it went off the first time.)  The display kept glowing "LOW."  I reached into the drawer of the bedside table and retrieved a tube of cake frosting.  Red.   

It's been a while since I've had a low in the wee hours of the morning.  I've woken up on the lower side a few times in the past several weeks (morning numbers in the 60's and 70's - too low for me), but there haven't been any low messes at 3 am. 

Until last night, of course.

Still unnerved from the Kevin James zombie dream, I consumed some cake frosting and let the sugar settle into my system.  It was absolutely silent -  not a sound coming from the roads outside or the cats milling around in the living room - and my brain kept screaming for more sugar.  

This is where I get stupid every time.  The frosting I ate was enough to cover my reaction.  After I tested, I saw that I was 45 mg/dl.  I'd already eaten about 20 grams of carbs, which would have brought me up nicely to about 100 and left me there.

But I had a brain full of zombie nightmare panic and low blood sugar, so I stumbled out into the kitchen. And proceed to drink about three cups of juice to quell my anxiety, checking in the hallway for zombies after each gulp.  It's so psychological, the way that juice calms the "low feeling" faster than anything else, purely in my mind.  Even if my blood sugar doesn't budge a bit, just drinking something sends my brain the "it's going to be okay" message.  (But I hate over-treating, because then I just end up high. See also: This morning's waking 290 mg/dl blood sugar.)

I wander back to bed, Abby circling my feet like a shark while I walk.  I'm starting to feel better, even though it doesn't dawn on me yet to maybe bolus for all the extra juice I drank.  Running my toothbrush under the water (because I can't stand waking up with that juice taste in my mouth and yes, this post-low dental hygiene thing happens all the time), I look into the mirror.  My hair is a disaster.  My eyes are wild, like a child who has been locked in a closet for days on end, pupils darting from side-to-side, panicked.  The bags under my eyes are distressing and apparently packed for a long trip.

God, I look awful.  Is this what a low looks like from the outside?

I remember the zombie dream and realize how ridiculous it was.  What kind of person dreams that Kevin James is gnawing off her arm?

I smile.  

And am startled to see my red teeth grinning back at me, stained from the frosting.   

June 08, 2009

The Green Drink.

I'm not going to bother saying it again, but in case you're new to SUM, I can't cook to save my life.  Seriously.  (I eat froast, for crying out loud.) 

Thankfully, Chris is always on the hunt for healthy, and tasty, recipes that work with his regimen and are easy on my bloodsugars.  And lately, he's been making this Green Drink. (Capitalized, because it's sort of official and better than when he pretends it's called "Pretty Green," after the Liam Gallagher clothing line - which it is NOT.  But Liam Gallagher is beyond funny in the interviews about his clothing line, so if you have a chance to watch this arrogant popstar wax on about his clothing line, you can follow him on Twitter.  And now I've digressed myself right into a stupor.) 

The Green Drink.

Point is, it looks a smidge like "You Can't Do That On Television!" sludge but it tastes very nice.

The recipe is pretty basic:  Three stalks of celery, one apple, a handful of baby spinach, all chopped up so they can be obliterated by the blender.  Add in approximately three quarter cups of water, a good dash of cinnamon, and blend it until the cats' ears get all panicked.

When it's done, you'll have a frothy glass of Green Drink that tastes very nice and is about 8 grams of carbs. 

How do you guys get more vegetables in your diet?  Since I'm doing what I can to keep the carbs at a minimum to (hopefully) lower my A1C, I'm eating more fresh green beans and celery as snacks, and drinking the Green Drink, too.  Will you like it?  I don't know - ahhhhh! - but it's currently topping my favorite way to get some extra servings of fruits and vegetables, so I'm for it.   

June 05, 2009

The Friday Six: Stuff on my Twitter.

NERD ALERT:  This post will reference Twitter.  For those of you who are unfamiliar with Twitter, it's a websiteThe Friday Six:  June 5, 2009 edition that serves up 140 characters worth of people's thoughts and links, illustrating just how much time people are spending on the Internet talking about their need for, oh, let's just say coffee. Or diabetes.

And apparently I'm spending some quality time there, too. 

I wanted to share, here on SUM, some random bits I came across over the course of the last week or so.  It's a Friday Six, Stuff on my Twitter edition.  (Nerd!!!!!)

1.  This is a "literal video version" of Total Eclipse of the Heart.  My co-worker found this and passed it on to the rest of us, which left the editorial department in tears from laughing for at least five minutes.  Favorite parts: Slo-Mo Dove, zoom camera under the arch, and "this classroom has a fan." 

2.  Goths in Hot Weather.  I've seen my share of "goths," but I've never thought about how the summer heat must affect their personage.  Sweaty goths must have tough summers, but man are they fun to read about . (This one, with four of 'em standing in the Pacific surf, brought me great, mascara-smudging joy.)  

3.  Yes, I missed the original Ellen clip.  And no, I hadn't seen this Hawaiian Chair infommercial until my boss's daughter sent it my way.  I want to try this thing out so badly and see if I can stay on it for more than a minute.  It could be like the bar rodeo bull, only for work.  Pondering ...

4.  And THIS freaking hysterical (and supposed) ad from a 1955 issue of Good Housekeeping had me and my college roommates giggling like idiots.  I can't even wrap my head around this.   "Speak in a low, soothing, pleasant voice." "A good wife always knows her place."  Oh dear.

5.  Rambo on a unicorn?  Don't mind if I do.  Seriously.  I'm getting one of these on my forehead.

6.  And finally, there's that FML (F*$% My Life) site and usually the posts on there are really crass and not the best stuff to share with everyone.  But this one was so cute and so sweet that I want to find the person who wrote it and hug them.   

Oh the Internet - always at the ready with something entertaining to click!

June 04, 2009

Stereotypes: We Haz Them.

I'm sorry, can you speak directly into this and let me know what ignorance you're spewing?A member of the Diabetes UK outreach group sent me their video about "setting the record straight," featuring a young girl with type 1 diabetes who is being bullied by her peers.  They taunt her, telling her she brought this on herself and that she is contagious.  She turns to the camera and asserts the facts about type 1.

And I agree with this.  My diabetes isn't contagious.  It isn't because I ate too many candy bars as a kid or because I had a weight problem or because a black cat carrying red balloons crossed my path on a Tuesday evening. But how often do I turn to the camera ... I mean, person, and set them straight with a well-articulated and poised onslaught of accurate information?

I am not a doctor and I can't spin you a tale of the precise physiological aspects of how diabetes works, but I do know that there's a pile of stererotypes. Though blogging, my job at dLife, and just simply sitting on the subway, I come across plenty examples:

  • "Diabetes is from eating too much sugar."
  • If you wear a pump, it means you diabetes is "really bad."
  • "You can't eat sugar."
  • "You can't eat carbs."  
  • (You can't eat anything, it seems.)
  • "Diabetics shouldn't have kids."
  • "Aren't you supposed to exercise when you're low?"
  • "Diabetes is contagious and you can get it through sharing needles."
  • "People with diabetes are unclean."
  • "Diabetics are the reason for increased healthcare costs."
  • Kids with type 1 diabetes can eventually outgrow their disease.
  • "Diabetes is cured by taking insulin shots."
  • "People with type 2 diabetes gave it to themselves."
  • "All diabetics are overweight."
  • "Diabetes isn't a big deal."
  • "Did you used to be fat?"
  • "No one wants to date or marry a person with diabetes."
  • Diabetes can be cured by taking this pill, this chocolate shake (!), this raw food diet, this crap supplement.
  • CGMs and pumps are a closed-loop system and by wearing one, I don't even have to manage my diabetes anymore.
  • "You're grown up now, so your mother doesn't have to worry about your diabetes anymore."

And the list goes on and on and on ... for miles.  I can't even list all the ones I've heard over the last 20+ years because they vary in shapes, sizes, and levels of ignorance.

Chris and I talk about this sometimes, about how much the "average" person doesn't know about diabetes.  About how I get offended at times when people talk about diabetes like it's something not worth worrying about or how people who end up with complications are at fault for their body's failure.

"Not everyone understands, Kerri."

"I know, but I really wish they did.  And I know that's unreasonable because plenty of people have much better things to do than care about a disease.  But I cannot stand when diabetes is made out to be something that I 'asked for' or something I manage so easily with the push of a button on this pump, right?  Do we look to healthy?  Do we not look healthy enough?  I think this is a serious disease and the stereotypes make me nuts sometimes."

After a beat:

"Good thing I'm not bitter, right?" 

We laugh, but the song remains the same.  People don't have a clue sometimes.  Sara is writing about itGeorge is Tweeting about it.  And I've touched up it here at SUM, too.

I want to know what kind of stereotypes you guys hear about.  Do you bother to correct people?  Do you write letters to let companies know that their marketing campaigns are painful to watch?  Do you make efforts to ignore the misinformation or do you work to correct it when and where you can?  Or are you practicing your apathetic "pfffft!" and moving on without giving it much thought? 

June 03, 2009

Pump Battery FAIL.

A funny thing happened on the cruise ship two weeks ago.

My pump refused to accept shiny new Energizer batteries.

About two days into our vacation, my pump threw out the familiar boop beep boop, and a quick glimpse at the screen confirmed what had been looming for a few days - low battery.  Since the low battery alarm goes off every few weeks, I keep a spare AAA battery at the ready in my testing kit.

Using a quarter, I unscrewed the battery cap, pulled out the dead battery, and slid in a brand new Energizer AAA.

Boop beep boop!

FAILED BATT TEST.

Oh come on.  I took the battery in and out again, trying the insulin pump version of "roll the batteries in the remote to get it to work" theory.  

Boop beep boop!

FAILED BATT TEST.

Battery FAIL!

Bullshit!  I went over to my suitcase and snagged another battery from the back-up stash.  The package of batteries was about a month old - Energizer, like the Medtronic manual recommends - and tried two new batteries.

FAILED BATT TEST.

"Arghhhhhh!"

Half expecting Chris to ask me if Lucy moved the football, I asked if he would run to the onboard cruise shop and purchase a package of batteries.  "I don't know what's up with the pump, but it refuses to acknowledge my new batteries.  It's being a prick."

Chris nodded and took off.  I proceeded to try each of the four batteries in the pack I had in my suitcase, and they all refused to work.  OMGWTFBBQ, what is up with this pump?  Why isn't it accepting new batteries?  This happened once before, of course when I was traveling, and it caused panic on my end.  Even though I had a tattered box in my medical bag with an almost-expired bottle of Lantus in it, and even though I had enough syringes to finish the trip without the pump, coming off the pump isn't easy.  I did it once before and it was a hassle of highs and lows - not what I wanted to wrangle with while I was on vacation.

Chris quickly returned with new, nine dollar batteries.

"Nine bucks?"

We both shrugged.

Of course these pricey batteries worked.

I believe my pump and the cruise ship were in financial cahoots on this one.  And Medtronic, what's the deal with this battery issue?  Has anyone else had this happen before?  Should I contact Medtronic?

June 01, 2009

Focus: The Diabetes Things I Like.

Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile:

  • I like when I change the battery and the insulin reservoir at the same time.  Having my Medtronic 522 "full" on both sides makes me happy.
  • I like when the carb count on something is exactly 10 grams of carbs because it matches my insulin to carb ration precisely.  One snack, one unit, one oddly happy Kerri.
  • I like the sound of the pump counting up a bolus.  Boop boop beep!
  • I like when the sound of the bolus is caught by Chris and he ends up whistling it back to me, almost without thinking.  It's a little soundtrack snippet of our life.  
  • I like when the cats wait patiently for me to remove the pump tubing from my body before they lunge for it.
  • I like when new boxes of diabetes supplies show up and I can organize them in my little OCD supply closet.
  • I like when the number on my meter is two digits, but higher than 89 mg/dl.  It's a tight range, I'm not usually in it, but it brings me weird joy.
  • I like when the Dexcom beeps and my coworker (who works a wall away from me) IMs me quietly to check, "Low?" because she's ready to get juice if necessary.
  • I like not having to wear a watch. Diabetes simple pleasures.  Damnit.
  • I like when I get to dump all the used test strips that have piled up throughout the day.  Knowing I've tested a bunch makes me feel like I really stayed tuned in.
  • I like the smell of white glucose tabs.
  • I like when the new infusion set doesn't sting at all.
  • I like having someone in my life who is willing to get their hands covered in SkinTac in an attempt to stick a Dexcom sensor to random places on my body.
  • I like that the hope of the parents of kids with diabetes rubs off on me, and makes me feel good for even just a few minutes.
  • I like that diabetes gives two people, who wouldn't otherwise have a thing to say to one another, a whole dinner's worth of conversation.
  • I like having coworkers who understand but don't push.
  • I like when my best friend clinks her beer to mine and says, "Bolus, baby."
  • I like when the cat licks my hand after I test.
  • I like "free shower:"  a shower without a pump site or a CGM sensor attached.
  • I like having a whole network of people who understand - and do not judge - my diabetes life.
I like when I can focus on the silly, simple things when I feel a little overwhelmed by the tough stuff. 

Let There Be Cake!

Even though our anniversary was two weeks ago, we had to wait until this weekend to score our cake.

This shit will set you back about 4,323 units of Humalog.

(Note:  Our original agreement with the cake baker was that instead of saving our wedding cake topper for a year and eating nostalgic, yet crunchy-stale cake, we would have a new cake baked on our anniversary.  Which was fortunate because our actual cake topper ended up in my Aunt Linda's back room for three weeks, stored with our wedding gifts, while we were on our honeymoon.  We returned to a box filled with cake that had sprouted what appeared to be ferns.  Thus, inedible.  And double-thus, we were thankful for the 'new cake' agreement.)

So on Saturday morning, Chris and I went to a cool little tea house in southern RI and stuffed our faces full of red velvet cake with butter cream frosting.

So delicious!

It.  Was.  Awesome.

And as irony would have it, my blood sugar was 130 mg/dl two hours after aforementioned gluttony.

The diabetes gods were smiling upon us.  Thankfully.  Because I've been wondering where the hell they've been lately.  ;)

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