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August 10, 2012

Wrong Diabetes Diagnosis.

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

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

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

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

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

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

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

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

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

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

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

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

September 29, 2011

Diabetes Terms of Endearment eBook!

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

February 22, 2011

Diabetes Terms of Endearment: Third Edition.

Diabetes Terms of Endearment:  Third EditionPeople living with and caring for diabetes have their own special language; it's a language that includes terms like "no-hitter" and "tsunami" that people without diabetes wouldn't understand, but those with it nod their heads and say "Yup.  Same here."  This dictionary is compiled from input from the fabulous diabetes community and is definitely a collaborative effort. 

Bring on the dTOES (Diabetes Terms of Endearment): Third Edition!!

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A1C twins
Two PWDs having the same A1C within the same week of endo appts

"Are You Unplugged?"
How to intimately ask if your partner has unhooked his/her pump site.  A way of subtly asking if it's sexy time.

Baby Bear number
When your number is in target, or juuuuuust right
ex. “It's almost time for lunch, go ahead and do a stick. What'd you get? Hey, great, you're Baby Bear!”

Basaling

The act or process of working out kinks in the basal rates 
ex.  “I was up half the night basaling.” or “We're skipping breakfast today because we're basaling.”

Bat Belt
The belt of a PWD (person with diabetes) who has all their diabetic accoutrements worn about their waist.  May include insulin pump, Dexcom receiver, and that grappling hook thing Batman uses to climb over buildings.


Beeg
The oral version of the abbreviation "BG" (for "blood glucose")  
ex.  “I’m checking my beeg!”

Bionic parts
A method of referring to diabetes technology instruments.  These items are often found on the aforementioned "Bat Belt."

Bolus-worthy
Food that is enticing enough that we'd take a ton insulin for it, despite any blood sugar results
ex. “That chocolate-covered cupcake looks bolus-worthy

BS-brain
aka "Blood sugar brain," the fog, agitation that seems to last all day and affects everything after a bad low or high blood sugar

Buddy Batteries

AAA Energizer pump batteries solely reserved for use in diabetes devices.  A lack of Buddy Batteries may result in an incident of D-Postal.

Case of the Ms
When your continuous glucose monitor graph looks like giant M's.  (Editor's note:  M's or W's.)

Case of the Shakies
A low blood sugar episode that causes shakiness


CDD
aka "Crappy Diabetes Day", when your blood sugar goes from 43 mg/dl in the morning, to 37 mg/dl an hour later, to 243 mg/dl at noon, to 321 mg/dl at 3 pm, back to 54 mg/dl at dinner, plus you might have an occlusion as well just to top things off.  See also: Gluco-coaster

Chaser
The bolus given when a PWD consumes a copious amount of food to treat a low blood sugar

Checka
A cuter way to reference a blood sugar check.  
ex.  “Time to checka your blood, mommy?”

Cluster-Beep
When you have to pull every single device out, from cell phone to CGMs, to figure out which one is beeping, buzzing, or just being a general pain in the arse. (It also applies to having to pull the same device out twice in 30 seconds)

D'Ambien experience
One of those middle of the night lows where you can't remember what you ate or drank, or how much, as well as any conversations you had. Quite similar to someone's night who takes Ambien.

D-Dumb
Term applied to people who just don’t "get" diabetes

D-Mom/D-Mama
The mother of a kid with diabetes, taking the disease on as their own.  See also:  Surrogate Pancreas

D-Postal

The act of lashing out as a result of societal misunderstandings of diabetes.  
ex. "You can’t possibly understand how hard it is living with diabetes, so I’d advise you to step down before I start beating you with my pump and a fist full of glucose tabs."

Diabadass
A PWD who does something awesome that non-badasses think diabetes should stop them from doing (e.g. having babies, biking across the country, playing in the NFL). See also: most members of the DOC

Diabetonese

The language of managing this madness! See also: all three editions of Diabetes Terms of Endearment

Diabuddy

A real life friend who also happens to have diabetes, too

Dia-
(can be an adjective, noun or verb) A prefix applied to any word when diabetes impacts said word.  Examples include "diafail," "diawin," and "diabadass."  Often found as Twitter hashtags and in the Clara Barton Camp dining hall conversations.
ex.  "I can't believe I forgot to bolus for the seven pancakes I ate for breakfast ... diafail!"

Diasecret
Those diabetes-related secrets that you have never told anyone

Diaversary
The anniversary of your diagnoses date, (aka the time you stick it to diabetes no matter what the blood glucose number is.  ex “We're having cake for dessert to celebrate your diaversary. You're 250? Then we'll just have to bolus extra.")

Disco Boobs
When a pump is hidden between a PWDs breasts, that moment of when it lights up and starts beeping, giving the chest area a look not unlike a disco ball.  See also: Iron Man

DOS Bag
aka "The D-Oh-Sh*t bag," the bag where a PWD carries around all of their emergency supplies (it goes everywhere) - extra infusion sets, insulin, extra strips, back up meter, juice, tabs, Glucagon, etc

Double Downing
When your continues glucose monitor graph has two down arrows, telling you you’re dropping fast

Double Rainbow Day
Means a line on the continuous glucose monitor that is inexplicably good and deserves ecstatic celebration.  See also:  What does it MEAN?

DSMA
aka #dsma aka Diabetes Social Media Advocacy.  Refers to a Twitter chat that takes place every Wednesday night at 9 pm ET, where members of the diabetes online community talk about diabetes lifestyle issues

E.T.

When your pump is still lit up inside your shirt

Exercise
Any form of physical activity, which most often effects blood sugar levels directly.  Such activities that may affect blood sugars include running, tennis, shopping, sexy moments, parking your car, lifting a pencil, and sometimes just the mere thought of exercise.

Flatlining
When your blood sugar is holding steady as seen on a continuous glucose monitor graph (see also: no-hitter)

Frankenbutt
When an old pump site is on the left side of your backside and you place the new one on the right, leaving the bum looking like Frankenstein’s neck with the bolts sticking out

Free Shower Day
Taking a shower on the day that your infusion set and/or CGM sensor are being swapped out, leaving your skin site-free

Glucocoaster
A crazy CGM graph.  Antonym:  no-hitter

Glucover
Diabetic version of a hangover. Is the after-affect of a bad late night low. Most often includes headaches and a bad taste of old orange juice and decaying glucose in your mouth. Cracker and candy wrappers and empty containers of food are often found lying around the person who is having the glucover. Most remedies include: brushing of the teeth, heavy applications of makeup to remove bags under eyes, Tylenol, and healthy binge eating.

Hard Low
There is a low and then there is a HARD LOW.  Most often coupled with standing with the refrigerator door open, eating the majority of a pound cake, and washing it down with half a bottle of grape juice.  Often followed by a Chaser

Hooked
When going about normal, everyday life and an inanimate object jumps out and grabs at an infusion set tubing, resulting in pain and/or cursing and/or the pulling out of said infusion set

H.A.B.
Huge Ass Bolus, usually taken in conjunction with huge ass meal

Insulin-Mama
The name my family calls me since my daughter regularly follows me through the house carrying crackers in her hand, saying "Insulin, Mama!"

Juicer
Another term for "insulin pump"

Lazy River Ride
An in-target CGM graph.  See also: flat-liner and no-hitter

Leaning
The act of standing quietly while low trying to hide a low blood sugar "lean" and someone notices you slightly tipping over

Liver Dump
When your blood glucose rebounds after a hard low (usually one in the 40s or below)
ex. "Hey, Mr. Liver ... thanks for the help, but it is a little too much and a little too late."

Make a Ladybug
To form that giant drop of blood that the old glucose meters used to require

Morning Boost
Refers to drinking coffee and the subsequent blood glucose spike the caffeine offers up

Mother-Birding
When a D'Rent feeds their young child glucose tabs or a sugar source

No-Hitter
A time period in which a diabetic does not hit their high or low threshold on their CGM. For a Dexcom user, they must be without any alarms during the entire day, and the day must be at least 24 hours. A diabetic who prevents their blood sugars from reaching a threshold is said to have "bolused a no-hitter."

No-No Cupboard
Where you (or your mom) keeps all your diabetes snacks that are off limits to others

Number
The glucose reading on the meter.  "Number" no longer refers to a phone number, jersey number, or the number you’re holding in line at the deli counter

On the Rise

When you're blood sugar has been low for so long, and then FINALLY shows signs of coming back up ex. "72. Thank goodness! I'm on the rise!"

Poker
Lancing device, also known as a "pokey"

Pump Envy

The feeling of T2/1'ers who are taking insulin injections 4+ times per day but do not qualify to receive a pump due to insurance issues or having a MiniMed or Animas or whatever-brand but coveting another brand or newer model

Pump-It-Up

What to do when you see a dessert that you just can’t resist (while simultaneously doing the raise-the-roof gesture)

SDD
aka "Shitty Diabetes Day."  May include any of and more than the following: feeling terrible due to blood sugar fluctuations, running out of low blood sugar treatment methods, needing to skip exercise due to blood sugar issues, and any and al instances that lend towards a "Diabetes: 1; Me: 0" day.

Sleep Treating
The act of bolusing, changing basal rates, or silencing ones CGM in the middle of the night without actually waking up to do so…(makes for interesting mornings…)

Stick
When ‘blood sugar test’ gets to be a mouthful

Sugar Baby
A name to call someone with diabetes, such as your daughter

Sugar Bloods
A more fun way to say blood sugar (especially with a southern accent)

Sugar Buddies
When you and another both have diabetes.  See also:  Diabuddies

Sugar Hang
The horrible headache that comes after a bad low or high

Sugar-Soil
When you get sugar on your fingers after treating a low which results in a falsely high re-check

Tsunami

A result of over treating a serious low blood sugar
ex. "Blood sugar at 38 mg/dl, can't hardly walk, grab the quart of OJ, not following the 15 rule. Result: two hours later a Tsunami blood sugar of 300 mg/dl.

Venom

What spews from our mouth when our blood sugar is off the charts high and we are less than sweet

"What’s off Limits?"
How to intimately ask where your partner’s pump site/continuous glucose monitor are located on the body
 
Winter Muted
When a pump or continuous glucose monitor is concealed under so many layers of clothes, its beeps are inaudible

Woodchuck
Safe word for “check your sugar” if you’re acting bitchy during a low blood sugar moment
(Editor's note:  Sounds like it could be "Wood-ya-chuck your blood sugar?"  PUNS!)

*   *   *

The first edition of dTOEs can be found on the old SUM blog, and the second edition can be found here. A compilation eBook will be available soon, with all three editions (and some bonus new terms) included!  Should be up in a few days.  Thanks to everyone for their input, and for Abby's help in compiling this edition.  :)

February 11, 2011

Adding to the Dictionary.

Ready for round three?  Yes?  No?  Maybe?  Check one.The first Diabetes Terms of Endearment post went up on my old Blogspot blog back in March 2006, and re-reading last night made me laugh all over again.  (Everything from SWAG bolusing to dotties was on that list!)  Then I found the dTOEs from April 2008, where we saw vampires cannulas and the acronym "YDMV" added to the pile. A community effort, with our whole community contributing.  (Only back in 2006, there weren't nearly as many of us online - power to the patient bloggers!)

But it's been a looooong time since the last dTOEs - like three years?! - and I know we have a bunch of words and phrases that only people with diabetes would really understand.  (Like no-hitter.  And #dsma.)  So I think it's time for a third edition. 

For the community-compiled third edition of dTOES, I'd love to hear from anyone who has a term that they use as part of their life that has become part of their vernacular.  The weirdo terms that you throw out at a dinner table with friends and they drop their forks to their plates, startled, while you're casually mentioning "shooting up." 

If you want to email your diabetes term of endearment (aka "sniglet" ... remember those?), please send them to Abby at abby (at) sixuntilme (dot) com with the subject line "dTOEs."  And if you want to leave them in the comments section of this post, go for it.  Third edition's the charm, right?  If you can send these/leave comments by Monday night, that would be awesome!!

Enjoy your weekend, and I'm looking forward to what our community comes up with this time!

February 07, 2011

Postsecret.


I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting.  (Also, the photo permalink URL included "onbackdiabetestype1forever," so that was a bit of a hint.)  And I realized, thankfully, that I don't hold any secrets about diabetes, because I've had the good fortune of this community to help me feel supported and empowered enough to deal with all my diabetes demons openly and unabashedly. 

I've had a few ideas for a non-diabetes related PostSecret postcard in my head for a few years now, and I took these pink cookies as a sign that 2011 is as good a time as any to let some things go.  PostSecret is kind of like Pandora's box, only the secrets that are released come from inside of you.  Like blogging, it's a unique kind of free therapy, and who can't use that every now and again?

Thanks for the inspiration, diabetes postcard writer. 

What would be on your PostSecret submission?  Feeling brave?  Leave an anonymous comment here, if you want.  Or submit your own PostSecret to Frank (does he have a last name, or is he like Cher?). 

November 24, 2010

Feeling Thankful.

Tomorrow is Thanksgiving here in the States, and I'm feeling pretty thankful.  While tomorrow is reserved for turning hand tracings into turkeys, today is a good day to highlight what I'm thankful for this year:

I'm thankful that we have a backyard that the cats can go crap in, because I was tired of cleaning that litterbox.  (And I'm also secretly glad that our neighbors have a ridiculous cat that comes over and starts trouble with ours, because when they pile into the bushes out back and cause the shrubbery to vibrate with their Andy Capp-style battles, it cracks me right up.)

I'm thankful for our family and friends, who have helped Chris and I adjust to our new lives as 'parents' and who make "home" a place that matters.  We're so glad to be sharing this chapter of our lives with the people and in the places we love the most.

I'm thankful for having good enough health to take it for granted, and to actually have the luxury of feeling frustrated when I'm "sick" because it's such a foreign concept.

I'm thankful for the wonderful work opportunities that have come up in the last few years, specifically for the companies and organizations that have embraced the voices of patient advocacy and who have decided to become part of the conversation.  

I'm thankful I have an insulin pump and a continuous glucose monitor that can help me make sense of the holiday meals.  Also known as:  Pie?  Yes, please.

I'm thankful that the lady across the street doesn't judge me when I wander in the front yard to check the mail, clad in workout clothes, slippers, a sloppy ponytail, usually with the baby strapped to the front of me a la Bjorn, my cell phone secured to one ear, pump tubing swinging in the breeze, and an army of cats weaving in and out between the maple trees.  She must think I'm a work-from-home crackhead.

I'm thankful that the Internet has brought a group of fellow PWDs into my life, and that I'm healthier and more informed as a result.  To boot:  I've made some very close friends through these bloggy blogs, and I'm grateful for their friendship every day.  Life is good when you're surrounded by those who don't make their own insulin. (And let's not forget that I'm also thankful for Abby the Person, who already rocks.)

I'm thankful for my husband, who is my best friend, my partner in parenting, my editor, and remains my hero.  And I'm thankful for my healthy and extremely happy baby bird, who wakes up every day with a smile, and helps me to do the same.  I didn't realize how much I missed her until she arrived.

And with that, I'm thankful for video:

July 13, 2010

Clara Barton Camp.

I love Clara Barton Camp.  I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds.  Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.

And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed.  Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).

When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs.  "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC.  Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.  

"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm.  But seriously, cabins having bathrooms is amazing.  My mind is blown."

Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes.  I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had.  And the audience with the highest percentage of diabetes!  According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis! 

The awesome staff members at Clara Barton Camp.

We all hung out in the dining hall and just chatted.  It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home).  They had a lot of questions about managing things like college, dating, and of course, the whole baby thing.  I tried to be as honest as I could be, toeing the line between "one of them" and "an adult."  Like when they asked me about drinking.  "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true.  But I can't lie and say that I didn't drink in college.  So here's what my experiences were like ..."

It was an incredible night.  These girls are a group for the entire diabetes community to be proud of.  Their energy, their endless smiles, their excitement for everything.  They took pictures (some goofy) and burst into song at the mere mention of the word "song."  (Video of a song about ketones coming at you ... now:)

Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there.  It sounds cheesy, but it's true.  CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay.  I asked some of the staff members to tell me what camp means to them.  Their responses were varied, but all hitting on the same general theme:

"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool.  The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."

But my favorite was when one staff member raised her hand and said, "It's the happy bubble.  This whole place makes me feel like I'm in a happy bubble."

Clara Barton Camp is definitely one, big happy bubble.  And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today.  Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt.  (And props to Savannah for rocking those mismatched galoshes!)

June 23, 2010

"When can she fly?"

"Um,   doctor?  When can she fly?"Summer tends to be a busy travel time for my family, so once Chris and I knew when BSparl was arriving, we started researching "traveling with babies."  We consulted different books, some websites, and asked around our collection of family members.  We also spoke with our pediatrician at her first appointment - and we asked her a ton of questions of all kinds.

"When should we expect her to start sleeping through the night?"
"Does she like us?"
"Should she be taking some sort of vitamin supplement?"
"Why is her poop, like, electric yellow?"
"When will she start crawling?"
"How do we get her to stop smiling when she eats, because it makes it hard for her to latch on?"
"Does she know we don't have a clue what we're doing?"

But the question that always made me laugh was this one:  "When can she fly?"

As though she was going to sprout wings and start flapping.

But apparently BSparl gets her wings next Monday, as the full Team Sparling travels to Florida for the Roche Summit and a few days of the CWD conference.  

And I have no clue how to truly travel with a little baby.  

As far as BSparl's safety and immunity goes, her pediatrician is completely fine with us traveling so soon.  BSparl has had her first round of vaccinations and we're breastfeeding, so her immune system is ready for travel.  But am I?  I'm a nervous traveling as it is, and the idea of planning for all my diabetes stuff and now BSparl's needs makes me feel like I'm certain to forget something.

So I would love some advice, if you have any.  What are some tricks for keeping a two and a half month old baby happy and content on a plane ride?  How do you pack for four days with an infant in tow?  What toys might keep her happy and quiet?  How can we keep the rest of the passengers from hating us?  Do airlines have special arrangements for teeny kids?  Is it true that breastfeeding is a good way to keep her content and to protect her ears from popping?  Do they have baby changing tables in the airplane bathrooms?  (Is there even room in there for one of those??)  Do you check the carseat as baggage or do you bring it on as a carry-on?  I HAVE NO CLUE!!!  (And please don't make your advice, "Don't bring the baby.")

If you have traveled with a little kid before and you have some sage advice, please, pass it along.  I'm still figuring this mommy stuff out and I can use all the help I can get!!

March 02, 2010

Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

February 12, 2010

Diabetic Mommy.

I opened this gift that arrived in the mail, and almost burst into tears because I hope, hope, hope this is the case for my daughter.

Thank you, Lindsay!  For making me feel like I'm going to be a good "diabetic mommy."
(This photo is also part of today's Diabetes 365)

I was thinking about how much planning and effort has gone into this pregnancy, from a diabetes perspective - never mind the regular gearing up that parents-in-training go through.  Chris and I have worked very hard, as a team, to manage my diabetes in efforts to get pregnant, and now that BSparl is in there baking cookies (or whatever it is she does all day), diabetes focus has turned up even higher in our household.

I'm blowing through test strips like a champ, wearing the Dexcom to help me keep track of the constantly-changing numbers, using an insulin pump, trying hard to eat healthy (even though I'm currently weighing the pros and cons of a red velvet cheesecake - recipe link courtesy of my friend Elizabeth Arnold), and making feeble attempts to get a workout in here and there.  Managing diabetes has become, seriously, a full-time job as my pregnancy rockets into the third trimester.

But I wonder what she'll think when she arrives.  And how much things will change.  Will she understand when I need to eat before she does, sometimes?  Will she feel upset if I need a few minutes to get myself together before I'm able to play with her?  Will she think I'm cramping her diaper bag style if I shove my meter in there, alongside her wipes and her binky?  Will she wonder what's wrong with my priorities when I refuse to share my juice box with her on our future playground dates?

Will she understand that even though that t-shirt will only fit her for a few weeks and she may not even remember it, but will she know that her diabetic mommy loves her, and has loved her since the moment she knew she carried her?

(And will she forgive her for all the third-person dialog?  Maybe not.)

I'm heading to Joslin again today, for the first of my four seven-months-pregnant appointments.  Chris and I will see our baby girl through the magic of ultrasounds, and then I'll meet with my endocrinologist to discuss how my body is soaking up insulin like a sponge.  Just a few more months until she's here, in our house, in our arms.

Baby girl, I hope you know how loved you are.

(This is part of a gift from my friend Lindsay, who I've never actually met in person, but I feel like I know, though emails and Facebook and blogging.  Thank you again, Lindsay, for such a thoughtful gift!  BSparl says thanks, too, only I can't really hear here because she's muffled by my enormous uterus.  And potentially the sound of the oven *ding* as her cookies bake.  Who knows?)

February 04, 2010

What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

January 12, 2010

Some Calls for Diabetes Help.

Good morning!  I have a few requests from readers, looking for information from you guys.  First up is Wil from Life After DX.  He's writing another book and these are the detail about what he's searching for:

Diabetes author William "Lee" Dubois is at it again, writing a book to fill a niche that seems either un-addressed, or under-addressed. He's starting work on his next volume, this time a handbook written for "Type-3s," the non-diabetic loved ones of all of us who suffer from the various flavors of diabetes. Type-3s are commonly husbands and wives, but can be parents, siblings, other family and close friends. Both Type-1 and Type-2 diabetics often complain that our Type-3s just don't "get it" and don't "understand" us. This book seeks to address this, and Wil is asking for input.
 
Wil tells me, "People have been asking me for years to write something to help their loved ones better understand what it is to be diabetic, why we do what we do, what we need from our loved ones, and perhaps more importantly--what we don't need from them. I've got some pretty good ideas on what should be in this book, but I wanted to cast a bigger net. So what I'm hoping is that both people with diabetes and their loved ones will share with me their thoughts on the things that should be covered in this new book."

You guys can email Wil at riosdad@plateautel.net and send your feedback.  :)

Also, another SUM reader had sent me a question about finding a good diabetes doctor in the Dallas/Ft. Worth area.  Here's her question: 

"I wanted to know if you had ANY recommendations for a good doctor in the Dallas/Ft. Worth area?  I live in Dallas but would be willing to commute a little ways if it meant someone who actually cares about my medical condition.  The doctor I go to know barely listens to what I have to say and I feel all alone in trying to manage my disease.  Any help or information you have in finding a good doctor would be much appreciated!!" 

If there is anyone reading who is from the Dallas area and can recommend a good doctor, please do in the comments section!

Thanks for all of your help, guys!!

December 29, 2009

Reader Question - Can You Help?

Can you help?Hey guys - quick question from a reader about medical insurance and insulin pump coverage.  I've had limited experience with insurance switches while pumping, so I'm hoping a few of you guys can offer another perspective or two for this SUM reader, so she can make an educated decision (and move towards a successful pregnancy - yay!!) 

"I'm switching jobs soon and will also be switching insurance companies.  Does this mean that I will have to go through the approval process [for the pump] all over again or will my next insurance company support whatever supplies I am using at the time I start my policy with them?  I have never changed insurance companies while on the pump and I don't know what kinds of hassle that will bring?  If any?  If I do have to start all over with the new insurance company, should I just give up and stay on MDI's?  Or should I go ahead and get pregnant and if I get approved, then start pumping mid-pregnancy?"

If you've got some advice for this reader, please leave your comments below!   Thanks in advance for your help, guys!

November 09, 2009

Two Heartbeats on D-Blog Day.

Diabetes Blog Day, 2009.  Holla ... and whatnot.The first time we saw him (or her), it was at the emergency room back in Connecticut.  We were only seven weeks into the pregnancy and barely had caught our breath from finding out when the bleeding happened and I panicked.  We spent five hours in the emergency room, poked and prodded and with an IV line at the ready, only to finally be wheeled into the ultrasound room. 

"Just relax, Mrs. Sparling.  And we'll take a look and see if everything is okay."

And the screen switched on and Chris and I saw our baby's heartbeat, strong and steady and fast, beating inside of me.  Everything changed forever, even though nothing had changed yet.

The bleeding stopped that day, and we moved forward, cautiously, frightened, and so hopeful.  A few weeks later, my mother and I (Chris was in LA on business) were at my Joslin appointment for the first "official" ultrasound, hoping to see the baby growing strong and steadily.

"Oh, there it is.  There's your baby.  Those parts there at the end?  The feet.  Those are the little feet, ready to kick."

And I watched as the teeny, hamster-looking creature inside of me kicked his little feet.  So small.  So ... surreal.  I couldn't wait to see him again.

Two weeks ago, Chris and I were at the Joslin Clinic for the first of a few second trimester ultrasounds, and from what my eight months pregnant best friend had already told me, this ultrasound was very different than the first one.  "It looks like an actual baby at that point," she said, her blue eyes wide.

Chris and I talked with Dr. T, the OB/GYN, for a while about how I've been feeling, my numbers, and overall how the pregnancy is progressing.

"I feel good.  Tired a lot, and doing a bit more traveling than I'm used to these days, but I'm feeling better now that I'm in the second trimester and past that fall-down exhausted bit from the first couple months."

"Good, sounds like you're doing great.  So ... wanna see the baby?"

"Yes!"

I hopped up on the examining table and Chris took a seat by the ultrasound monitor as Dr. T. moved in with the external ultrasound wand.  "A little bit of this warm gel right on your belly and ... okay, there we go!"

On the screen was a baby.  A whole baby, all big-headed and waving arms and kicking legs.  Our baby.  Hands with fingers, legs with knees.  This baby looked like a real baby.

"Oh my God, is that him?  He's so big!"  I couldn't believe this was the same little hamster from just a month or so ago.  He took up the entire space of my uterus, which was a big change from all the room he appeared to have a month ago.  Now he looked like he was out of room in there (and I knew that meant my own expansion was coming fast).

"Yes, that's the baby.  Calling him a 'him,' are you?  We'll find that out next month, right?"

I watched as the baby turned and squirmed, raising his arms up and his body lurching just a little bit every few seconds. 

"Dr. T, does he have the hiccups in there?"

She looked closely and smiled.  "Yes, that looks rhythmic and steady.  Looks like hiccups to me.  Would you like to hear the heartbeat?"

She turned a knob on the ultrasound machine and suddenly the room was filled with a steady whump whump whump sound - the sound of our child's heartbeat.  It was incredible, hearing my own heart thudding in my ears with excitement as my baby fluttered along inside of me.  Chris held my hand as I brought the other one up to my eyes to catch the tears that collected there.

Two heartbeats, both inside of me.  

And today, on D-Blog Day, I wanted to share this story with you guys.  You have been with me from when Chris and I first moved in together, back when the dream of a heartbeat other than my own was something I only hoped to one day hear.  Now, every day that passes brings BSparl closer and closer to meeting his mom and dad.

When I was diagnosed, they said that children would be near impossible for me.  And while I know that nothing is certain until that baby is in my arms, I am already so proud of where we've come, as a Sparling family and as an even larger diabetes community.  We have hope now, hope for lives that are wonderful and meaningful, despite diabetes.  Diabetes is a heavy load to carry, but with the support we get from this community, the burden is so much lighter.

Happy D-Blog Day, you guys.  And thanks for being part of my extended family.

November 03, 2009

Lovenox, Heparin, and WTF.

What the hell am I supposed to take?During my endocrinologist appointment last week, I brought up that itchy, scratchy Lovenox rash to my OB/GYN, Dr. T.  And she wasn’t comfortable with how my body reacted.  

“That rash is from two weeks ago?  How does it feel now?”

“Less itchy, that’s for sure.  But it got all hivey and wouldn’t relax, not for about a week.  It itched like mad.”

“I don’t like that.  I don’t want you to continue to take Lovenox, especially if it gave you that reaction.  Who knows how bad the reaction could be the next time?  I want to switch you to something else.”  She started to write on my chart.  “Heparin could be another alternative for you.”

“Okay, what’s the difference?”

She told me that both Lovenox and Heparin are large-molecule drugs that don’t pass into the placenta, so Bsparl is safe, and also that they both serve the same purpose:  to protect me and my baby from blood clots (the risk of which increases with both Factor V and pregnancy).  

But you guys know how I am by now.  I feel weird taking extra drugs, and I’m very conservative about adding more and more Rxs to my daily routine.  Also, consulting with Dr. Google brings me all this scary information about how Heparin is a category C drug, meaning it could have effects on the baby.  I don't know what's what, but I do know that I need to trust my doctor and her years of experience over a Google search.  (Right now, I'm wondering if I can bypass these drugs altogether and just work out in the airplane bathroom for the whole flight.  Kidding.  Sort of.)

Yet I still find myeslf feeling uneasy, and looking to see if any of you have had personal experience with Heparin.  I'm very WTF about this and confused as can be.  Right now, I’m only on insulin, pre-natal vitamins, and blood pressure meds (don’t worry – safe for baby), but according to Dr. T, I’ll be taking something to help protect me from clots for six weeks after BSparl is born.  (Great.)  So now is a good time to figure out what works best for me.

Once again, I’m clueless about what to expect.  I’m sorry to keep pestering you guys with all these questions, but when it comes to anything other than insulin, I’m lost.  When I wrote about Lovenox before, you guys were invaluable and I learned a ton (even brought some of it up to my doctor).  Now I’m asking once more – has anyone ever taken Heparin?  Any weird, itchy side effects?  Any burning at the injection site?  Any … anything?  

(And BSparl says hi.  He just sent a messenger pigeon to me from the womb.  He is baking cookies in there.  Busy little peanut.)

September 29, 2009

Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

July 29, 2009

PatientBloggers at BlogHer09.

The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone.  Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.

Fast-forward to July 2009, when the PatientBlogging panel debuts at BlogHer, with Jenni Prokopy, Loolwa Kazoom, Casey Mullins, and me on deck as panelists, with Mr. Lady as our moderator.

I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues.  But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.

(It helped that my fellow medbloggers Rachel, Lee Ann, and Kim were right there in the front row.  Familiar faces ease nerves!) 

The PatientBlogger panel at BlogHer.  More on this photo later.  Sorry I'm not smiling.  :)
The PatientBlogging Panel at BlogHer '09.  For some reason, I'm not smiling.  But I was v. happy.

Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases.  Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me.  I'm also married, but that doesn't mean I'm only someone's wife.  There are many, many parts to the whole.  Diabetes is just a part of me."

We talked about what it was like to connect with people who "get it."  About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.  

"Big, fat disclaimer, guys."  I kept repeating myself, when asked how we deal with people thinking we're offering medical advice.  "It's not medical advice.  We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”

Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved.  As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.   

It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions.  But it was intimate.  Comfortable.  We, as a group, were protected within that room.  People spoke their minds, and let themselves cry, without fear.

So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room.  "I look like I have cancer, but I don't."  Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.

"No one has seen me without this, except my husband and my children."  She was crying, along with almost everyone else in the room who was watching her in awe.  "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want.  It will do wonderous things for you."   

Sometimes it's hard for us to blog about our diseases.  It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness.  Sometimes readers lash out and attack us for our opinions or our care regimen.  Sometimes we are forced to have thicker skin than we'd like.

But sometimes blogging about our conditions is what gets us through the day.  Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today."  Sometimes it's the comments from people who really understand what it's like to live with these diseases.  And sometimes it's simply knowing we aren't alone.  And that we never have been alone.

And now, with the support and love of our communities, we never will be alone again.

Patient blogging ... that's some powerful stuff.  This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.

July 27, 2009

Wait, You Wanted Pictures??

Wait, what's that?  You want to see pictures?  Oh hell yes I have pictures.

This event offered more than interaction with a seemingly open-minded Pharma company.  This event gave me the opportunity to meet and reunite with some of my favorite bloggers in the diabetes space.

Here's the standard shot that the crew at Roche took of all of us.  We look downright jolly.

Jolly bloggers

The night before our meetings with Roche, we went down to the hotel bar and hung out for a few hours (before getting kicked out, sort of, and ending up in Christel's room until the wee hours of the morning and being harassed by "Tim," who has been explained in several wrap-up posts from other bloggers).  

Here are three very special members of my diabetes family, even though this was my first time meeting Scott in person:

We are family.
 
But, of course, every family photo session has it's awkward moments where the big guy tries to toss the tiny blond in the air.  The Ninja and the me could only laugh and end up captured in awkward, eyes-closed grinniness:

Christi gets tossed.

There are plenty of wonderful people I finally connected with, but without formal photographic evidence.  Like Will from Life After DX, who I've been reading for years and am always inspired by.  And Bernard (spelled Bernard) from The Diabetes Technology Blog, who I should have met years ago but until this past week, had never had a chance to hug in person.  I had the honor of meeting Crystal (aka CalPumper), Christopher Thomas, Chris Bishop, Ginger Viera, and Brandy Barnes for the first time, too.  And there were also the several bloggers who I have had the pleasure of meeting before, like Fran, Amy, Manny, Christel, Scott Strumllo, LeeAnn, SuperG, Scott King, Kelly, Jeff, Gina, Riva, Kelly Close, Allison, and Bennet.

Also, my old friend Sandra Miller was in attendence, representing with Bennet Dunlap (again, I know!) and Jeff Hitchcock as the parents of children with diabetes.  David from Diabetes Daily was also there, on behalf of his wife Elizabeth (who is type 1).  Charlie Cherry and David Mendosa represented for the type 2 crew, and Kitty Castelinni stood as one of the few recipients of a pancreas transplant.

So we all met up. 

And goofed off.

A potluck of bloggers ... and this isn't even everyone.

Including Bennet showing off his fabulous pink camera (ooooh!), a late-night packy run, Kelly sharing stories from her diabetes past that made me want to give her a huge hug, a Blair Witch moment and, of course, Christel throwing down to "Tim," a random caller who was intent upon snuggling with Mr. Diabetic Rockstar.  Needless to say, all 4'11" of Christi kept Tim from making any fast moves, and to say that Christopher owes her big time is a gross understatement.  ;)

(Sidenote:  David, I still think it was you who called from the bathroom, but the world may never know the real truth.)

It was a true potluck of diabetes bloggers, representing from all sorts of different demographics.  Unfortunately, there were several bloggers who were missing from this group, and I'm hoping - no, damnit, I'm demanding - that there is an invitation sent to more members of our influential blogging family for any future meet-ups.

These people are my friends.  They're the people who understand what living with diabetes is really like, and they are the external support network I have been hoping for since my diabetes diagnosis in 1986.  So thank you to Roche for giving me the opportunity to say hello to, and hug warmly, the people in this community that I cannot wait to see again.

More of my photos are in Flickr, and there's also a D-Blogger Summit photo pool where you can grab the best of the shots!   

July 05, 2009

Tin O' Joy.

I love surprises, and I'm a bit smitten with pear jelly beans.

So when this arrived last week,

Thank you, Windy!!

... filled with pear-flavored jelly beans, I was very happy indeed.

Thank you, Windy!  This was a wonderful anniversary surprise.  :)

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!!

May 13, 2009

Guest Listener.

I boarded the train in Connecticut and from the time I found Karen (of Bitter-Sweet fame), I was downing Dex4 liquid things, glucose tabs, and Smarties constantly.  The Dexcom kept BEEEEEEP!ing, my meter kept confirming, and I kept infusing the sugar.  I was under 70 mg/dl for the entire train ride, the cab ride, and then the first ten minutes of the support group meeting in NYC.  By the time the group arrived and we were doing introductions, I was punchy from the sugar rush.

"Hi, I'm Kerri Sparling and I've been low since Karen and I got on the train in Connecticut." 

This is how I decide to introduce myself to the support group in NYC?  Great.  Already off to a decidedly awkward start.  (But I'm nothing if not awkward.)

But these women were patient with my ramblings.  And they truly are something else.  Katie Savin, organizer of the NYC support group for young women with type 1 diabetes, has found some of the most compassionate, open, and well-spoken women in the NYC area to share her space with.  I was invited at their guest speaker, but I was humbled to be more of a guest listener.

They share openly.  Someone asked a question about CGMs and three people leapt up to show their sensors.  A woman shared her emotional journey with complications and guilt and the rest of the group immediately offered words of support and validation.  Another woman is getting married nine days from today and went on her pump barely a month ago, and the group offered tips on hiding her pump in her dress.  Another (with the best hair I've EVER seen) is marrying in November but proactively preparing her body for pregnancy, and I felt her frustrations intimately. 

We talked about what it's like to be newly diagnosed, or a diabetes veteran.  Some on pumps, some on shots, some on CGMs, some on the fence - it was a melting pot of personalities and passions, all lives laced with type 1 diabetes.

It.  Was.  So cool. 

(And I finally had a chance to meet LeeAnn from The Butter Compartment and author Elizabeth Joy. I love putting smiles and inflection to the writers I read, and I was very happy to say "Oh my gosh, hi!" in person.  They are two lovely and extremely talented writers, that's for damn sure.)

The hour and a half meeting ended too soon, and we found ourselves tumbled out onto the sidewalk and chatting out there.  Sidewalk chats lead to sidewalk photo shoots.

And photo shoots lead to "Are you going to put that on the blog?"  

Of course I'm going to put this on the blog, damnit!  :)

(Answer:  Yes.) 

And then we blinked and about ten of us were sitting at the Gramercy Diner and still talking our faces off.  I am constantly amazed by the steady and comfortable flow of conversation between diabetics, and how quickly the conversations stray away from diabetes stuff.  We are not short on things to say, it seems.  (Just short on islet cells.  :: rimshot ::)

Much like the Fairfield County dinners, the group is comprised of people who have nothing in common but diabetes.  But at the same time, that gives them everything in common that they need to sit and talk for hours on a Tuesday evening and become friends.

Thanks for having me, Katie - I was very honored to be your guest.  I hope to see you guys again soon!! 

April 17, 2009

Guest Blog: Diabetics Have Healthy Babies All the Time

Baby advice for diabetics, brought to you by not-doctors. Thanks to Jessica Hickok for offering to guest post today (I'm still in Tucson with the fabulous Dr. Val).  Jessica wrote a post about something that is definitely on the forefront of my diabetes mind, namely diabetes and motherhood.   Jessica offers up her thoughts on her diabetes pregnancy and advice on managing all the emotions.

*  *  *  

Quoting a line from the movie “Steel Magnolias” for the title of this post seems only fitting when guest blogging about what it is like to have babies and type 1 diabetes. 

You see, I am type 1 and currently 31 years old.  When I was 22, my husband and I had been married 2 years and decided it was time to fulfill our dreams and have a baby.  And the biggest piece of advice I can give to everyone who has seen the movie “Steel Magnolias” … it is important to remember that life does not always imitate art.

We did the planning and really worked hard on keeping my blood sugars regulated.  We spoke to my doctor and with an HbA1c of 6.8% we were given the green light to have a baby. <insert cheesy, romantic interlude here>.

However, when I found out that I was pregnant with my first child, I was both elated and scared at the same time.  I knew it was coming, but I immediately thought to myself “what if something goes wrong?” 

When other PWDs ask me about my child-birth experiences, I feel compelled to share my story and the following advice of what you can expect or should consider: 

1.    Do not let diabetes steal your thunder.
Be happy for yourself, you’re having a baby!  Just because you have a chronic condition, does not mean that you cannot enjoy the pregnancy and anticipation of motherhood.  Nor can you let your dreams be ruled by fear or guilt of your disease.  So you have to work a little harder at staying in a healthy glucose range, big deal, you’re going to do that anyway.

2.    Be comfortable with your doctor.
Being diabetic automatically puts you in a high-risk category.  However that doesn’t mean that you should lose sight of your basic rights as a patient.  Find a doctor that is comfortable with your disease and one that is willing to work with your diabetes doctor or endocrinologist. 

3.    Expect that your baby might be big. 
High sugars can spill over into the placenta feeding the baby and causing a large birth weight.  Both of my boys were born approximately 3 weeks early and the first one weighed 9lbs 12oz and my second was 10lbs 14oz.  No, I am not looking for a prize, but I do point that out just to prove that all of my complaining during pregnancy was justified.

4.    You may have to have a c-section.
C-setions aren’t bad, they just sound scary.  Yes, it will take you time to recover, but just think with your tightly controlled blood sugars that you had during pregnancy, your recovery time should go relatively quick. I had both of my babies delivered c-section and I wouldn’t trade it for the world…I did tell you that they were big babies, right?!

5.    Expect that your sugar readings will roller coaster after having the baby. 
While my hormones were bouncing around back into place the few weeks after having the baby, it caused my sugar readings bounce along with it.

6.    Diabetics have healthy babies all the time. 
Today, my first child is 8 years old and my second is 5 years old.  They are bright, healthy and so-far diabetes free. (knock on wood).  And the good news is that my story didn’t turn out at all like the one in Steel Magnolias.

I was lucky to have my insulin pump while I was pregnant.  And because there have been so many advances in diabetes technology (enter CGM!), I know that it has only become better and easier for PWDs to have children. 
 
The moment I held that precious newborn, my fears were all washed away.  For those amazing first moments of holding my new baby, I was not diabetic … I was a mother.

Disclosure from Jessica: Please keep in mind that this post is written purely based on my opinion and my personal experiences with pregnancy and childbirth.  I am not by any means a medical doctor.  Nor do I share my story as medical advice. Please talk to your doctor about your plans to have children.

Editor's note:  Thank you for posting today, Jessica!  There are guest blogger spots I'm looking to fill, so if you'd like to guest blog on SUM, email me!

April 10, 2009

Color Comparision Chart.

As I mentioned yesterday, I stumbled upon some diabetes relics at my dad's house the other day.  Now I'm totally in memory lane mode.  :)  I found this staple of my early diabetes management:

The Red Diabetes Book

The "Red Bible."  This book was given to my parents by the Joslin Clinic when I was diagnosed, and it held the supposed answers to any diabetes questions.  (You can see on the cover there where I was practicing spelling "restaurant" many years ago.)  I thumbed through the book and found plenty of recipes and snack ideas, all using the old food exchange philosophy.  Pages and pages of things I couldn't eat, and small sections of what my lunch options were. Half a cup of spinach, one sugar-free popsicle, rice cakes with peanut butter, those peanut butter nab things ... places to buy food scales and measuring cups ... countless pages focusing on food.  I always hated that assumption that a healthy diabetes life was achieved solely through my dinner plate.

There were three pages on handling diabetes in school settings.  No mention of 504 plans or testing in the classroom or anything about how my fellow students would react.  A short description of the symptoms of low blood sugar and how to treat it, but that was about it.

The pages on blood sugar monitoring and management brought me back to my diagnosis days.  When I first started testing my blood sugar back in 1986, we used a machine that took 120 seconds to produce a result and the strips were color-comparison ones that had to be wiped with a cotton ball and then plugged into the meter.  The color comparison chart seems so remedial compared to the UltraLink on my desk or the Dexcom on my hip.   Here's a screenshot of what we'd compare the color pads to:

Chemstrip color comparison chart

Not much to go on.  (And the numbers were too easy to manipulate.  I remember wiping the color pads on the strip with rubbing alcohol to make the results seem lower.  I wasn't the most responsible kid.)

The thing that kills me is the lack of focus on the emotions of diabetes.  There were only TWO pages on "living with diabetes."  How stress can affect blood sugar management.  How important the impact of a support network is for acceptance and dedication.  I want to rewrite this Red Bible and flesh out more of the parts that count.  Support groups, diabetes blogs, communities ... this is the future of diabetes management.  Meters have improved a little, insulin has improved a smidge, but our methods of support have leapt by such enormous margins that my future health is already brighter.  

My Joslin appointment is next week.  And believe me, I'll be talking about you guys there.

April 07, 2009

Diabetics Running Amuck in New Haven.

I'm a road warrior ... or at least I was this weekend.  And it all started on Friday night, when I met Manny Hernandez for dinner in New Haven, and we were joined by Adam. 

Manny, Adam, and Kerri in New Haven.
 
Plenty of wine, beer, and coffee later (coffee was me - had to drive to Rhode Island after dinner), the three of us were knee-deep in discussions about Dexcoms, diagnosis dates, and our first low blood sugars.  These guys are true kindred spirits and excellent dinner dates. 

One thing that came up was our "before" and "after" with diabetes.  For Adam and Manny, they were both diagnosed in their late 20's, early 30's, respectively.  For me, I was diagnosed when I was in second grade.  Their "diabetes before" included decades of memories and a certain sense of self, not to mention memories without the disease.  My "diabetes before," for better or worse, doesn't include more than a handful of childhood memories without the disease, and my sense of self is coiled around some aspects of diabetes.

"What's better, though?  I mean, there are pros and cons to both and I don't see a definitive 'yay' to either, honestly."  I drank my second cup of coffee and let the caffeine spin around in my brain.

A lot of the people I'm in contact with that have diabetes were diagnosed in their childhood years - Howard at dLife, Christel, most of the Fairfield County dinner ladies - so they are dealing with the same "lifelong" diabetes as me.  But I've also met many late-onset type 1s - the LADA crew, as I fondly call them and then subsequently picture a fire engine - and their life-altering diagnosis must be so jarring, coming into their lives later.  Adjusting to diabetes wasn't much of a challenge for me because it's almost always been there.  I only had a year or two of elementary school before I was diagnosed.  I can't imagine finishing college and then being forced to change everything midstream. 

But I will admit to a bit of a pang of envy as I tried to remember my first low blood sugar while the guys described the recent memory of theirs.

"I'll have to ask my mom," I said.  "She'll remember." 

It's not a debate, believe me.  It's not a question of "Who has it worse?"  Type 1 diabetes, regardless of it's arrival date, is its own cyclone of discovery.  But the discussion made me realize how long I've had this and how old I'm not.  And when people talk about cures, how lives will be changed when a cure for diabetes is found, and even though I don't often think about a cure, I can't help but happily muse about "diabetes after."

I've kept the tags on for 22 years, just in case I need to make a return.  ;)

March 31, 2009

Townie Bar Meetup.

"What are you on?"Connecting with other d-folk!

Four sets of hands fumble for their hardware.

Me:  "I'm on a 522."

Karen:  "I have the other one?  The bigger one?  722?"

Erin:  "I've got Minimed, too."

M:  "Animas ping!"  (She reaches into her shirt and pulls out a pink pump.)  "I bet you didn't even know it was in there." 

Where does the question "What are you on?" get everyone to flash their pumps, other than at a dinner with fellow diabetics? 

Last night, four of us (me, Karen, Erin, and M) met up for another Fairfield County dinner at a townie bar in western Connecticut.   Despite the fact that none of us were locals, the townies in the bar accepted us and allowed us to occupy a table for two hours and chat about pumps, pregnancy, and coffee addictions.  (Dear Waitress,  Sorry I yelled to get your attention.  I was excited.  It was coffee!  I'm sorry.)  It's nice to hang with nice people who completely understand the need to briefly bleed before eating, and who get it when your "hose" is exposed. 

It has become a comforting tradition, with the attendees fluctuating dependent on the weather, the season, people's work schedules, etc, but there's always at least a handful of us who have a few hours to spare with new friends.  Note:  Beware of stories taking a decidedly non-diabetes turn, i.e. storing lipgloss without pockets.  ;)

Are you interested in meeting up?  Are you in Fairfleld County, CT?  Email me at kerri (at) sixuntilme (dot) com and we'll add you to the email list!

March 25, 2009

All-Inclusive Diabetes Software.

Do you know of any?  (See title.)Diabetes info OVERLOAD!!!

I've received a few requestions from readers about software to take all the information from our respective diabetes devices (multiple meters, continuous glucose monitors, electronic food diaries, etc, etc, etc.), and I don't have a clue where to refer people.

I know some d-folk use SugarStats and other data tracking software, but are there others?  I have a few readers who are looking for info, but quite frankly, I'd like to know, too.  :)  My logbook is being updated regularly (and blue stars are being steadily applied to my calendar), but to have an all-in-one system that can integrate all of my various diabetes info moments would be awesome.   

if you have any ideas, please share them! 

Update:  Someone emailed me about Project Diabetes - which has an iPhone app and everything.   Another person mentioned the Track3 device (which I will be reviewing later in the week/next week) for tracking.  If you're using this, let us know how it works for you!

March 13, 2009

My Mom Says Hi.

I love my mom.It's no secret that my mom is a huge part of my success as an adult with diabetes.  Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me. 

My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again.  Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal." 

From My Mom: 

Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post.  What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)

The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.

Parents are responsible for the well being of their children from birth to when they  are able to live on their own. (Not that it stops us from worrying.)  Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.

Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.

I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun?  But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!

I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!

Thanks, Mom.  For everything. 

February 26, 2009

SUM Reader Needs a Hand!

You guys are total super heroes!Hey again.  I received a question from a reader I'll call "NC Mom" and "NC Daughter," but it's out of my geographic grasp.  Maybe one of you can help?  Here's her question: 
 
"Kerri, my 28 year old daughter (who has diabetes) and I love your blog.  I have a question I am not sure you can help with, but it's worth asking ...
 
Do you know of any resources to help preggo diabetics in North Carolina? We are so excited that she is pregnant, but also are concerned about the costs. She has to see her Dr. every week with a $50 co-pay, since he is a specialist.
 
I know the costs are going to continue to sky rocket, with pump supplies, test strips, etc.  I am just reaching to everyone I know (and don't know) and asking about resources.  Any help you can give will be greatly appreciated!"
 
I edited out some things from the email, but one point to make is that our pregnant North Carolina reader is employed, but her insurance has a wicked high deductible and her income is above the poverty level, so she doesn't qualify for Medicaid.  Do you guys know of any North Carolina resources - or ones she can tap from the Internet or phone - that can help NC Daughter maintain a healthy pregnancy with diabetes?  Leave it in the comments section.
 
Thanks in advance!  I appreciate all of your help. 

January 27, 2009

Not Perfect, Never Claimed To Be.

Diabetes perfection?  Nope.A few weeks ago, when I was gearing up to hear my A1C results, I admitted freely that the wedding stress of eight month ago really left it's mark on my numbers.

And over that weekend, I received several emails from people that said, "Me, too!  I have trouble lowering my A1C too, but every step towards my goal is a step in the right direction!"  I also received emails just wishing me some luck on controlling these numbers.

Then there was the one that asserted "A person in your public-facing position should have better control of their numbers.  You are a role-model and someone that should set an example to these young children.  An A1C of 7.5% is not good enough."

And then there was a comment from Dr. Bernstein:  "An A1c of 7% corresponds to an average BG of 180 mg/dl.  Not a wise target for someone who wants to become pregnant.  A normal A1c is 4.2-4.6 % -- not what the ADA promotes.  Pregnant non-obese non-diabetics usually have blood sugars below 70mg/dl."

I'm not sure what kind of impression people get of me from reading this blog, but if I've made the mistake of fooling you into thinking I know how to perfectly control my diabetes, that unfortunately is not the case. I'm not a role model, not like that.  I don't have perfect diabetes control and on some days, I'm not sure what to do next.  I am trying to fill in for my islet cells, for an organ that went rogue on me, and it's not a science I've perfected.  I'm working hard, every day, to achieve a level of life and health balance.

So to the folks who think I should have an A1C of 5.0% simply because I blog about diabetes ... for those who are reading and clucking your tongue against the roof of your mouth - "Oh, her baby is going to be upset in there if she has an A1c that high when she conceives." - I invite you to stop clucking around.  (Puns.  Cannot resist.  Sorry.)  SUM is a public blog, and I've made the choice to make my diabetes life a public one, but I'm not a doctor.  My A1C is not 5.0%.  I don't have this "all figured out."  (And I sometimes eat E.L. Fudge cookies when I'm frustrated.)  

But blogging has provided me with a support community I couldn't have imagined.  I can't even begin to tell you what kind of an impact you all have had on me, proving time and time again that I am not alone with this disease.  You guys make me feel connected, secure, and confident that every bump along the way can serve to educate me and make me a tougher (E.L. Fudge?) cookie. I appreciate the support, and I appreciate the criticisms because they are more than valid.  But don't expect me to have this thing completely controlled.

I want to be healthy, and I want to enjoy a healthy pregnancy in my future.  I am working to bring my body to a state of optimal health, but I'm not lying to myself, or to my readers, along the way.  Shit.  Gets.  In.  The.  Way.  I can't pretend to be perfect, but I am honest about my shortcomings, and I am trying to do better for myself and for my family

If you want to leave comments about how you think I should be better controlled, I'll agree with you.  If you want to peck at my armor and find the kinks, you won't have to look very hard.  I put all of this out there knowing the risks and the judgments that come with a public-facing blog.  And I appreciate that people care and offer their opinions and perspectives (both good and bad), and provide that community I was craving when I felt alone. 

But my diabetes, shared with the Internet or not, remains mine. 

Remember that before you pick up a stone.  My house isn't the only glass one.

January 26, 2009

The Biggest Loser: Diabetes-Style.

The Biggest Loser:  Diabetes-StyleReckon that on these here diabetes blogs (spits into spittoon), we do a lot of sharing.  We share our best diabetes practices, our literal highs and lows, and we also have the common bond of this disease.  And through these shared experiences, we learn to take care of ourselves, and each other. 

(Is that Jerry Springer's line?  I can't remember.  But in any event, I mean it.)  

So when I heard about The Biggest Loser:  Diabetes-Style, I knew this was another example of the power of the diabetes blogosphere.  Turns out that 18 of our very own are taking on a "Biggest Loser" type challenge, and they're letting us follow their progress and become inspired by them along their journey. 

My friend Landileigh, creator of Landileigh's Little World and this weight loss challenge, took some time to talk with me about The Biggest Loser:  Diabetes-Style and how she's hoping it will rock their worlds!

Kerri:  What made you want to start The Biggest Loser - Diabetes Style?   And how long is the program?

Landi:  With having Chronic Kidney Disease, I need to be at a weight that won’t be so hard on my body for when the time comes for dialysis. My good friend George over at TheBADblog.com was also going through a similar weight realization and I knew he couldn’t go through this alone, and neither could I. The Biggest Loser ‘D’ Style was born with helping the two of us out. I never thought I’d have 18 people join up!  We’ll be following the schedule of the show … so 12-16 weeks.

Kerri:  What was the catalyst?

Landi:  Seeing this picture! I never realized I’d gotten so .. ummm.. large.

Kerri:  You say on your site that it's not about diet or exercise, but more about supporting one another as you work towards better health. How are you guys rallying the troops and keeping everyone inspired?

Landi:  I’m sending daily emails to everyone who is participating, and posting on my new blog at www.landileigh.com.

Kerri:  How are you holding one another accountable? How do you keep track of where people are "starting from" and what their goals are?

Landi:  No holding back, it is out there on the internet for everyone to see. If you can’t post it and show it, you can’t say to yourself that you want to do something about it.  I have a large spreadsheet in Excel that is keeping it all [the results] straight for me.

Kerri:  You have Other Diabetes, and many of the other participants are also diabetic, or the parents of diabetic kids. Does the same kind of inspiration work for all kinds of participants, or do you need to tailor your approach?


Landi:  I think the main goal is doing this for our health, diabetes or not. Obesity and being overweight is one of the largest health concerns there is today. I’m not guiding people on what their diet/exercise plan is. There are tons of them out there for them to pick from. But I am asking that people say, "Here I am! I want to do something about it!" Kind of like an AA program for being overweight. I also wanted to help my comrades in the D-force!

Kerri:  What happens when you guys cross the finish line?


Landi:  For every week that you completed that week’s challenge and sent in your weight, your name goes into a hat. At the end of the 16 weeks, names will be drawn and given prizes. So far I’ve gotten donations from Rickina at StickMeDesigns and AmyT at DiabetesMine will also be donating prizes.

Kerri:  What happens once the 16 weeks are over?
 
Landi:  Hopefully they’ll be less of us! And I’ve already been asked to start a Biggest Loser ‘D’ Style II for people that weren’t able to get in on it this time.

To follow the success of the Biggest Losers:  Diabetes-Style, scuttle on over to Landi's blog and stay tuned!  (And look out for some prizes from me here at SUM - hopefully it won't be a lock of Siah's fur.)  Thanks, Landi!!

January 21, 2009

Diabetes For The Day: Round Four

This past Monday and Tuesday, another dLife coworker volunteered to be "diabetic for the day."  (We'll call him Johnny CoWorker for the purposes of this post.)  He wore an infusion set (sans needle), a "pump," and tested his blood sugar throughout the day.  But in addition to the physical hardware of diabetes, I spoke with Johnny CoWorker about the emotional aspects of diabetes, citing how vulnerable highs and lows can make us feel, what the feelings/food conundrum is like, and what it's like to manage a chronic condition not just for the day, but for a lifetime. 

He asked a lot of questions.  And he listened.  This is his feedback about his experience with diabetes for the day:

Kerri:  You wore a “pump” and tested your blood sugar throughout your day with diabetes.  How did you feel about these devices?

JC:  The pump was not an issue for me, it was slightly weird getting used to it and when I had to decide what to wear for work. Other than my kids asking me what the wire attached to me was, I didn’t notice it.

I got the hang of testing after a little bit, and was very interested in how working out or what I eat affected my numbers.  A couple of times I got a bleeder and it stung and then one time I had to prick my hand four times to get enough blood to get a reading (rookie!).  I felt in tune with my body and was intrigued to learn my numbers each time.

Diabetic For the Day!

Kerri:  You wore the pump all day and overnight.  Was it comfortable?  How was sleeping with something attached?  Showering?  Was it difficult to dress for?  Did you almost drop it into the toilet at any point? 

JC:  Definitely the decision of what to wear was interesting – a button down shirt tucked in where the wire would be sticking out of my shirt or a sweater where the wire can easily go into my pocket.  I choose the sweater to avoid the tugging of the wire.  Relaxing, sleeping, and showering was much more comfortable than I expected.  When I bent over to tie my shoes, I caught the injection site the wrong way and it pinched, I can only imagine what that would of felt like with a needle injected.
 
Kerri:  How did testing your blood sugar affect the way you thought about food? Did you find the blood sugar testing to be painful? How comfortable were you with the process?


JC:  I ate healthy all day so no big swings high or low, but I was very cognizant of testing before I ate and then two hours after to see what affect the food had on my numbers.

A couple of times it was painful.  Initially when I first started I thought if I had to do this all the time I wouldn’t mind.  But as the day wore on I found it to be more of a burden to do and was struck with the realization that this was a 24 hour experiment for me vs. a lifetime for many others.
 
Kerri:  How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow? 

JC:  Luckily no, I exercised and ate well all day so my numbers where in a range of 83 – 121, which I was pleased with.
 
Kerri:  Do you feel as though you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?  

JC:  I think I do, but I don’t know that I can truly appreciate what it would be like for others unless “I had” to do all of this.  I would be interested in learning more about if I had a heavy carb meal (like my favorites – pasta or pizza) and what that might of done to my numbers.  I am grateful that I don’t have to know how food, exercise, or stress effects how I feel on a daily basis.
 
Kerri:  Did this experiment make you appreciate your health any more?  Less?

Continue reading "Diabetes For The Day: Round Four" »

January 11, 2009

Graduate Student Needs Our Feedback.

Survey says ...Happy Sunday night!  I have another reader request for help, this time from a graduate student named Devon.  She's been emailing me for several months now and is aiming to get some feedback on her thesis survey.  I asked her to provide me with a write up about what she's looking for, and this is what she sent to me. 

"I am a graduate student at the University of Denver in the Human Resources Administration program. The purpose of the capstone is to take an important current issue, that is personal to me, and make it not only a thesis paper but a project. My project is to look at how the ADA has changed over the years, especially as shaped by court cases, and how the ADAAAA intends to help restore the intentions of the law passed in 1990. My belief is that the ADA is not sufficient in improving the employment of people with disabilities because there are many illnesses and conditions that fall within the definition of the ADA, yet these people do not consider themselves disabled.

The survey therefore looks at what people know about the ADA, what they consider disabilities (by taking disabilities that are visible and those that are not) and also looking at attitudes. After all of my research it seems that doing more to increase positive attitudes by setting an example in the workplace goes farther than the protections the law provides. I do not believe by any means that we can go without the ADA. The protections it provides are vital. With all the research and the survey results I gather I hope to create a program that my own company can use to increase appreciation for diversity, especially in the area of hiring, promoting and developing people with disabilities."

If you have a minute to fill this short survey out, please click through on this link and offer up your perspectives.  And thanks!

(Note:  These are Deven's words and views, as are the contents of her survey.  These views do not reflect my own perspective or beliefs.  Just tryin' to help get the word out.)

January 10, 2009

Looking For A Little Type 2 Help.

Hey again, guys.  I received this email from a reader named Barbara who wanted some feedback re: Byetta andFaithful Readers strike again! how it might affect her.  I've never taken Byetta and I don't know much about it, but I was hoping some of you could help fill her in on what she might encounter.  Here's her question:

"I have heard lots of good things about Byetta and don't have any serious aversion to taking the stuff except that it's still kind of new, expensive, and don't feel that he is managing my type 2 properly. There are no endocrinologists in this town and a good internist is scarce as hen's teeth. Is there any body out there who would like to share their experiences with Byetta? My family practice type tells me that if I take Byetta, I'll lose weight and then I won't have diabetes anymore. I've already lost 12 pounds on my diet, but have hit a plateau and am starting to cheat big time. I have to do some thing quick. HELP!"

Can you help fill in the blanks for Barbara?  (And I love, love, love the phrase "scarce as hen's teeth."  I may borrow that from time to time.)  Thanks for your input, and thank you, Barbara, for asking!

January 08, 2009

The Year of the Log.

My mom and I used to fill in my log book the night before Joslin appointments, clicking through the glucose meter's memory and writing results into a steno notepad.  

"Use a different pen, Mom," I'd encourage her.  "That way it will look like we did this on different days."

"Kerri, grab that coffee cup and smudge a bit riiiiiiight ... here."  

My logbooks looked like treasure maps from centuries past, complete with fire-singed edges and wrinkled, tea-stained corners.  And my then-endocrinologist at Joslin was no idiot. 

"Your log book is very ... weathered," she'd say with a smirk.  "Has it seen far-away and exotic countries?" 

Blush. 

I've been diabetic for over 22 years, and keeping track of my numbers has been a challenge for me and my management team since Day 1.  I need to turn this trend around and actually keep track of these numbers because they mean so much on their own, but they mean so much more when they're viewed as a big picture.  Logging is the one big resolution I have for 2009, and I said I was going to try.  So I'm trying.

I needed to get myself all incentivized to log my blood sugars.  Logging, as I've mention a million times before, is THE hardest thing for me to reign in.  I test regularly, eat well, and exercise, but I have a mental block about logging numbers.  One that I need to get over.

So I did a very grown-up thing.

I bought stickers.

Stickers work for adults too, right?

 And made myself laugh with a pun.
 
My not-so-clever pun about my diabetes log book.  I'm trying, though!

This is going to be my Log Book, and my last week's blood sugars are printed out, three-hole punched, and all nice-nice in there.  I had the chance to look at my glucose average (173 mg/dl, thanks to a 404 mg/dl after a pump site change), my glucose numbers within target (62%) and the number of hypos I've had (5).  Rough week.  I'm determined to look at better results next week and say, "Ah, there it is- I've hit my stride."  Or at least, "Hey, there weren't any numbers over 240 mg/dl and you only had one low."   

I'm hoping I can stick with printing out my blood sugars every week, and if I can stick with the program, I will slap a star on my calendar.  Stupid?  Maybe, but it's tangible proof that I DID IT.  And hopefully by DOING IT, I can hold myself accountable for my management and make some improvements.  I won't know unless I TRY.  In all caps.  That's how I roll.

So, armed with stickers and silly puns, I'm making 2009 "The Year of the Log."   And I think that I'm telling you guys in efforts to make me stick with it.  Knowing that YOU know makes ME feel like following through isn't so tough.  IN ALL CAPS.  ;)

January 07, 2009

FDA Petition For Diabetes.

A little patient perspective goes an awfully long way.

And this time, the diabetes community is rallying to make a lot of patient perspective go as far as it can - straight to the Food and Drug Administration (FDA) to urge them towards creating a Diabetes Advisory Council.

Members of the diabetes community, myself included, are co-sponsoring a petition to achieve this advisory council goal.  Here is the core goal of the petition, as written on the website:

"Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process of evaluating new diabetes treatments.  Our aim is to improve options for patients.

We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy.  Our recommendation can benefit patients without sacrificing their safety."

- Ask FDA to Better Serve Diabetes Patients

This petition isn't about passing unsafe drugs and paving the way for companies to market crappy products to our community.  It's not about turning a blind eye to drug-induced cardiovascular issues.  What this petition does is give people with diabetes, and the people who care for them, a clear voice in these government processes.  As the petition states, our "experience, focus, and keen awareness" of the needs of the diabetes community would be an invaluable resource to the FDA. 

We want safe and effective treatment options.  Diabetes is a disease that affects my life every single day, and I work hard to stay as healthy as possible.  I believe that the perspective of patients like us and those who love us can collectively raise our voices and bring newer, safer diabetes treatment options into our lives sooner rather than later.

I want a cure.

But for now, I'll settle for progress.

If you want to see a Diabetes Advisory Council created, sign the petition and pass it on.  And for more information on the programs the FDA already has in place for patient advocates, check out this link.  Help spread the word on how the diabetes community can make our collective voices heard.

December 22, 2008

Dexcom Pros and Cons.

As with everything diabetes-related (or maybe just life-related), there are pros and cons to this whole continuous glucose monitoring thing.  For those of you who are still thinking about whether you want to make this CGM leap, here are my pros and cons of CGMing to shed some light on the subject.

CGM CONS:

The sensor is bulky.  The sensor isn't tiny (about the size of an iPod shuffle), but it's held securely down by the adhesive gauze, so once it's in place, I can't feel it.  This is a big deal for me, since the Minimed CGM was painful for me.  However, it's visible underneath the sleeve of my shirts when I wear it on my arm and it's slightly uncomfortable to sleep on when it's on my back.

Can be "too much information."  Having blood sugar updates every five minutes is awesome, until you find yourself checking it every five minutes and obsessing over each result.  I needed to be psychologically ready for a CGM, and I need to be able to keep it from ruling my life. 

Receiver is enormous.  The Dexcom receiver is pretty big - bigger than my Blackberry - and it's cumbersome to wear.  I usually keep it on my desk, in my purse, or in my coat pocket when I'm out.  At night, I strap it to the headboard of the bed using a headband.  Not a big deal, but it's hard to miss.  Especially when it ...

Beeeeeeeeeeeps! The beeps are LOUD.  Mega loud.  Loud enough to wake me up during the night if I'm low (thankfully), but during the quieter parts of the workday, it's loud enough to distract my coworkers.  I recognize that the beeping is important, but it's not always convenient.

Adhesive sort of sucks.   This is my biggest compliant about Dexcom sensors.  The things do NOT want to stay stuck for more than five or six days.  I shower twice a day (before work and after the gym) and I wear clothes that rub up against the sensor, no matter where I place it.  Even with SkinTac, the edges of the sensor start to peel up at about the five day mark, and it's loose and ready to fall at the 7 - 8 day mark.  (And sometimes, the SkinTac and the Dexcom adhesive and a not-so-helpful bandaid create a huge and ugly problem:  frigging ouch.  See the photo on Flickr for a full rundown.) 

Ouchy Dexcom

I do not like when a $60 sensor starts to peel away.  This is highly annoying.

Insurance coverage battles. While others have had their requests approved without batting much of an eye, my insurance coverage for the CGM had to be fought for.  I battled my insurance company for over eight months before receiving my approval letter.  The insurance hurdles are a definite con, and might make some people reluctant to fight for their right for a CGM.  (Cheerleader note:  But don't let it stop you!  Go for it!)

Doesn't feel "sexy."  (Yes, I know this "shouldn't matter," but these are my personal pros and cons, so roll with me, okay?)  With the pump infusion set stuck into one part of me and the CGM sensor in another, wearing two devices doesn't exactly feel like I'm ready to model for Victoria's Secret.  There have been plenty of times when a moment has been interrupted by the CGM beeping or the sensor getting stuck on my clothes and whatnot. 

CGM PROS:

Low blood sugar safety net.  This was a huge part of why I wanted to use a CGM in the first place:  hypoglycemia unawareness.  I was exhausted and frightened of the lows at 3 am, so having the added safety net of the CGM has been a huge improvement.  The CGM does its job and protects me from plummeting blood sugars.  When Chris is away on business, he prefers that I wear the CGM to keep an eye on those lows.  It makes me feel safe, and I value that "pro" above all others.

Helps me avoid staying high.  My body reacts to blood sugars that are over 260 mg/dl or so, but those 160's and 180's often go unnoticed.  The Dexcom helps me wrangle in these "minor" highs and tighten up my blood sugar standard deviation overall.  Staving off both the lows and the highs will be particularly helpful during my future pregnancy.

Excellent for exercise.  I go to the gym at least five days a week, and my workouts range from walking/jogging on the treadmill to cardio circuit training.  The CGM has been AWESOME at detecting fluctuations in my numbers while I work out, helping me avoid those crash-and-burn lows at the gym and also the highs that sometimes crop up after a hard workout.  (And it was great on our hikes when we went to Acadia - excellent tool!)

Driving safety.  I spend a lot of time in the car driving back and forth to RI, and the drive time is anywhere from 2 1/2 hours to 4 hours (depending on traffic - I hate CT highways).  Having the Dexcom in the center console next to me while I travel is another big bonus.  With hypoglycemia unawareness and blood sugars that seem to be affected as much by my moods as by what I'm eating, having an extra eye on those numbers is crucial to keep be safe behind the wheel.

Integration-free works for me.  I trialed both the Minimed CGM and the Dexcom and for me, the Dexcom being a seperate device worked best for me.  With the Minimed CGM, I couldn't hear the pump alarming in the night because it was buried underneath the blankets.  Having the Dex receiver separate from the pump is convenient for the nighttime alarms and also if I want to avoid having to deal with the CGM for a little bit.  I can shove it into my purse, bury it in a desk drawer, or even walk away from it for a little while if I want.  I like the freedom from being beeped at sometimes.  It sounds counterproductive, but in the longrun, this is a bonus for me.

Trending and tracking.  Here's the point of CGMs - to track the trends of my blood sugars.  The Dex doesn't replace my meter, but instead works with it.  I test on my meter and see a result of 100 mg/dl, but with the Dex, I know I'm "100 going down," "100 going up," or "100 holding steady."  This makes it easy to go into long meetings at work without fearing a crash, and also lets me go to bed at a blood sugar of 90 mg/dl with confidence.

Pretty darn accurate.  I don't expect this thing to be right all the time.  I already have my head programmed to accept that a CGM doesn't replace finger sticks, so when things don't match up all nice-nice, I don't flip out.  Overall, though, I've found that the CGM rides pretty close to my meter.  Dex works better when I'm running a bit steadier, so it's actually a weird sort of incentive to maintain better control to retain the integrity of the sensor.  Don't ask me to mentally make sense of that - I need to take whatever motivation I can and run with it.  ;)

But it does feel sexy.  And this is the flip side to that "con" coin.  The Dexcom is sexy.  It's stuck to me to gain better control of my diabetes.  Good control helps everything from my weight to my hair to my internal organs to my smile.  Being healthy is sexy as hell.  And being confident enough to wear this machine, despite its cons and because of its pros, makes me feel stronger all the way around.  For me, after weighing all these pros and cons, the CGM is definitely worth it.

Conquering diabetes, damnit.

Readers Beware!!:  These are MY pros and cons.  I chronicle my personal experiences with diabetes here on SUM and I'm not a doctor or a CDE or a medical professional of any kind.  I have decided to use the Dexcom CGM after trialing both the Minimed and the Dexcom, but I know plenty of people who are using the Minimed CGM without issue.  For me, the Dexcom was a more comfortable fit into my life, literally and figuratively.  It's all about personal preferences, and these are mine. 

If you're thinking about trying out a CGM, I recommend trialing as many kinds as you can before making an informed decision.  Your mileage on these devices will vary, so it's important to find out what works best for YOU.  Contact your CDE and see if you can schedule a week trial session with different devices. 

If you want to share your perspectives, feel free!  I love that the online diabetes community has become a real source of information for diabetics everywhere who are looking for real information - we are the true mavens of patient experience!

November 21, 2008

Insulin Pumps In Wedding Dresses!

Six months ago, Chris and I got married.  (Holy crap, six months already?  I can't believe it's been that long!)  When I picked my gown, I spoke with the seamstress about creating a pocket for my insulin pump to hide in all day long.  And on my big day, my pump was safe and secure, and so was I.

Over the past few weeks, I received emails from other women who had just tied the knot.  These two different, wonderful, recently-married women also had their insulin pumps worked into their wedding day, like I did.  And they agreed to let me share their stories - and their gorgeous photos - here on SUM! 

Here is Lindsay:

Lindsay
Lindsay on her wedding day.

"I've been a reader of your blog since this spring when I Googled 'insulin pump' and 'wedding dress' in the same thread.  Your site popped up and I was hooked.
 
I wanted to thank you for showing your readers pictures of the insulin pump pocket that your seamstress made for your wedding dress.  I, too, was wondering how I'd manage a pump in that corset-back dress with a very full skirt (and no way to access a thigh holster!)  Attached is what my seamstress came up with.
 
I was able to have my cake (and champagne) and eat it too, all while maintaining a 121 mg/dl throughout the wedding."

(The best part of this is that her best friend, Jenn, emailed me months ago about how her best friend is diabetic and is getting married.  She and I corresponded for a bit ... then Lindsay emailed me a few months later!  Small online world!)

And this Suzanne: 

Suzanne
Suzanne on her big day - with her big smile!

"I only bolused once during the whole reception.  It was one of those rare 'perfect diabetes days' - hovered between 85-110 mgdL all day!  I didn't have the cake & danced like crazy, so that probably had something to do with it.  :) 

Anyway, it was a grand day, but my husband and I marvel at how great every day since then has been.  We love being married!"

I love their pictures.  I love the look on their faces - gives me goosebumps!  Thank you so much, Linsday and Suzanne (and hi, Jenn!) for letting me share your stories and photos here.  There's no better way to end the week than by celebrating love and showing that diabetes doesn't stop anything - not even a beautiful bride on her big day.

October 29, 2008

Hannah Montana Does Diabetes?

Old school TigerBeat.  Ahhh!  Luke Perry!Here I am again, stepping waaaay outside of my comfort zone and admitting that I've seen that ridiculous TV show "Hannah Montana."  My niece M (formerly "Chris's niece M," but now that he and I are married, she's my niece, too!) has made me watch Hannah Montana many times, and it makes her giggle, so I tolerate it.

Now we all know that Hanna Montana is played by Miley Cirus.  Miley Cirus used to date Nick Jonas.  (Gag - I can't believe I'm writing this, but there's a point.  Bear with me being all TigerBeat.)  Nick Jonas was diagnosed with diabetes in November 2005.  And in an episode airing on November 2nd, diabetes makes an appearance on Disney's Hannah Montana show.

I've come full circle.  Finally.  ;)

This upcoming Hannah Montana show was brought to my attention by one of the wonderful CWD parents (full disclosure:  I love the CWD parents.  They remind me of my own mom and dad, and they rock!), and she wanted to know if I could help get the word out about this upcoming episode.  I watched the bootlegged show on YouTube several times, and I can see why the parents are up in arms about this.

Parents are protectors.  That is their job, and the parents of kids with diabetes are the ultimate protectors, acting as external pancreases while maintaining a normal life for their child.  So when a show that kids are rabid for, like Hannah Montana, highlights diabetes, there's this sense of hope.   Like, "Hey, Disney is involved with Nick Jonas.  They are tuned into kids.  They won't screw this up."

But did they?

If you watch the episode, you'll see plenty of references to diabetes, some accurate and some completely eye-rolling.  Calling the character with diabetes "sugar boy"?  Pointless.  (I'm not the most PC person you'll ever meet, and if someone called me "sugar girl," I wouldn't care.  But if it were my kid receiving that moniker, I'd rip heads off.  Yet I've digressed.)

However, the thing that struck me as completely off-base was the constant theme that Oliver couldn't have any sugar.  He spends most of the episode drooling after sweets, fantasizing about cotton candy, and even diving into a trash can to retrieve a tossed out candy bar.   The other kids in the show kept talking about how they need to keep sugar away from Oliver, at all costs.  This is what made me think, "Uh oh."  I get that the show is trying to talk about diabetes in ways that kids can understand, but this theme was dangerous. 

So what if Oliver gets low at school?  And needs sugar?  Is the lesson here that diabetics can't ever have sugar?  Holy food police training video.  This message sets a dangerous precedent, one that could leave a low diabetic child being denied sugar, if all their peers have to base their knowledge on is Hannah Montana.  And yes, I know that education comes in more forms than Hannah Montana, but lots of kid watch this foolish show, and I don't want their impressionable heads filled with misinformation.

I'm not blowing the whistle on this episode, not entirely.  I'm glad that diabetes is making its way into mainstream media, and I'm also glad that the end of this show had Hannah Montana and her friends reassuring Oliver that he was still the same guy and still their friend.   That's pretty damn important.  I just want to see this positive message of acceptance accompanied by accuracy. 

Watch the video (there are three parts) and let me know what you think.  Do you feel like this episode presented factual diabetes information?  Were there parts you liked?  Didn't like?  Wanted changed?  Are you of the mindset that all exposure is good exposure?  That intentions were good with this episode?  Or do you expect more from Disney?  Are you inclined to write a letter?  Plain don't care?  Are you sick of my questions?  Who the hell is Hannah Montana, anyway? 

Phew!  I'm off to read the newest issue of TigerBeat.

October 27, 2008

Do Something!

Mollie Singer is a sweet girl, a talented singer, and a fellow type 1 diabetic.  And like me, Mollie has the benefit of a really terrific support network that helps her better manage her diabetes.  In particular, Mollie has her twin sister, Jackie, who rises above all others to support her.

I'm happy to share that Jackie has been selected as one of the winners of the Do Something awards, and as part of a partnership between Do Something and Doritos, Ms. Jackie herself will be featured on the back of a nacho cheese Doritos bag.  Jackie is highlighting diabetes awareness and their organization, the Diabetic Angels

Mollie and Jackie Singer

Congratulations to Jackie, and thanks to her for her hard work in raising awareness for diabetes!!  And be on the lookout for these snack-tastic heroes in grocery stores today!

October 14, 2008

Fran's Diabetes Parade.

A cup of coffee with a fellow diabetic.  :)There's that instant connection between people who have diabetes, because we really know.  We know what it's like to test blood sugars, count carbs, wrangle in pump tubing, battle numbers, fear complications, and live life with this disease every single day.  We get it, physically and emotionally.

And then there are the people with diabetes who you connect with, regardless of the disease bond.  When I heard Fran Carpentier take the microphone at the Women's Empowerment, Diabetes, and Development event (sponsored by Novo Nordisk, World Diabetes Foundation, the MDG3 Global Call to Action, and the Global Alliance for Women's Health), I knew this lady was on my wavelength.

"I didn't cry when I was diagnosed because my mother was too busy fainting," she said with a loud laugh, filling the room with her warmth and charismatic spirit.  Type 1 for over 39 years and a Senior Editor at Parade.com, Fran looks healthy, sounds healthy, and has a seemingly unbreakable spirit.  And she's passionate about diabetes.  Diagnosed in 1969 and "Patient No. 2" of the landmark DCCT trial, Fran stated confidently, "You not only survive, but you also prevail!"

After the speakers finished their presentations, I made my way over to Fran to introduce myself.  Instant connection - we started comparing diagnosis dates, insulin pumps (we're both Medtronic users these days), questions about CGMs, and talking about those moments that only another diabetic woman can understand. 

"So my pump is here," she reached into her shirt and pulled out her insulin pump.  

I laughed.  "Mine, too.  In the bra is the best place to hide it in a dress!"  

We sat at one of the tables in the conference room and chatted without effort.  Life as a diabetic, life as an editor, growing up in RI versus growing up in NYC, insurance battles (at that time, I was mid-stream in my war with Oxford for the CGM), and diabetes blogs.

"I've been a diabetes blogger since May 2005.  It's a fantastic way to connect with other diabetics, and to help me feel like I'm not the only one out there who is dealing with this."  I grinned at her.  "It's what connected me to dLife in the first place." 

"I know!  I've read your stuff!  I'm starting my own diabetes blog next month at Parade.com."

The conference ended, yet we found ourselves at a diner down the street, sharing stories over many cups of coffee (don't worry - we switched to decaf to prevent off-the-wallishness).  Diabetes brought us together and gave us "war stories" to share, and we spent several hours chatting each other up.  It was like connecting with an old friend, even though we'd never met before.  

I sat across from Fran, a powerful career woman with a laugh that caused heads to turn at the diner and with her pump casually hanging out of the front of her dress, and I saw what I hoped would be my future.  Thank you, Fran, for being someone I can relate to, respect, and hope to be just like.

Editor's Note (read:  more from Kerri):  Fran's blog is live!  Check out Diabetes, Day-By-Day over at Parade.com!

October 13, 2008

BlogHer Boston.

The weekend was a good one.  I gave up my old car ("gave up" makes it sound like it was a struggle to part with ... I "tossed out" my old car) and picked up my new Honda Civic, which I love, love, love and it is such an upgrade from my fickle Jetta GLS.

Oh holy YAY new car!

After nabbing the new ride, I went to Boston and attended the BlogHer Out Reach conference, along with several hundred other bloggers.  This was my first adventure at a BlogHer conference, and I definitely learned a ton.  It was an interesting experience, having "What's your blog about?" as a socially acceptable "getting to know you" query.  Even more interesting was breaking outside of my normal comfort zone, as a patient blogger.   I met women who wrote food blogs.  Marketing blogs.  Book blogs.  Political blogs.  Mommy blogs.  Blogs about the environment.  And blogs about ... well, blogging.

The first session I attended was about how Social Media Can Save Media.  Moderated by Lisa Stone, the panel of Lisa Williams, Sarah Corbitt, Theresa Hanafin, and Colleen Kaman hit on hot topics like online communities, using social media to distribute knowledge, and the power of connecting through networks like HARO and Twitter.  The main reiteration was "content is queen" (it was BlogHer, after all), and how the best blogs are those with original and engaging content.  I agree - nothing stinks more than a recycled idea. 

Lunch was brought to BlogHers by Shine, Yahoo's new community, and the session focused on building web traffic, optimizing search engine queries, building a loyal community base, and CONTENT.  Again, content being the most important aspect of blogging was the focus of this discussion.  On my Flickr site, I have shots of all the powerpoint slides, if you want to poke through and get some tips.

The first afternoon session I attended was about how Social Media Can Save Your Business.  Susan Getgood, Laura Fitton, and Laura Tomasetti anchored this panel and the hot topic was definitely Twitter.  Everyone in the damn room was Twittering, from the girl behind me to the woman on my left.  Lisa Stone, who was in attendance at this session, was tweeting updates as we went along.  We talked about the usual suspects - Facebook, Twitter, blogs - and how businesses can make use of these new media outlets.  Bottom line appeared to be that good content goes the farthest.  Theme of the day for sure.  "Be genuine.  Post frequently.  Be original!"

The last session was about (this title made me laugh) How Social Media Can Save Dinner.  This lively discussion was hosted by foodbloggers Sarah Caron, Kalyn Denny, Nika Boyce, and Lydia Walshin.  As the only diabetes blogger in the room, I made sure I asked about where people can find nutritional information for online recipes - Lydia recommended SparkRecipes.  (dLife also has a database with full nutritional information, FYI.)  We also talked about food photography, which I thought was awesome.  Those foodbloggers work hard - they cook, photograph, consume, and then blog it.  One blog post can be a four or five hour adventure! 

Lisa Stone and Kerri Sparling at BlogHer

Closing keynote was with Elisa Camahort Page and included Dana Rudolph, Beth Kanter, and Isabel Walcott Hillborn.  They talked about blogging success stories and unique experiences, and I offered up my story of how blogging brought me from a crappy job to a great job in new media marketing.  After the keynote, there was an open bar (brave, brave BlogHer), where I had a chance to talk with Lisa at length about medical bloggers and our special place in the blogging community. 

Blogging - it's the great uniter.  (Hondas also appear to be a great uniter, but that's another digression I don't have time to make.)  If you haven't attended a BlogHer event, see if there's one coming your way soon!

October 07, 2008

Doodle For Google.

A Doodle For Diabetes!You know those cool little drawings on the Google homepage?  The moaning man on Edvard Munch's birthday?  Or the one of the turkeys sitting around the dining room table to mark last year's Thanksgiving holiday?  (That one was pleasantly ironic.)  These doodles are done up by the Google crew to raise awareness for specific events and holidays.

And this year, the diabetes community is aiming to have a diabetes doodle for World Diabetes Day on November 14th.  

"How can I help?  I can't even draw a straight line!"

Yes, there is something you can do.  The advocacy crews at Diabetes Daily and TuDiabetes have teamed up to get Google's attention by providing a petition with 20,000 signatures by November 1st.  That means we only have the month of October (which is whizzing by) to get names added to the petition. 

Sign the petition by clicking here.  Add your name, then share it with your coworkers.  Send it to friends.  Family members.  Buddies from Facebook.  Your Twitter pals.  Ask your brother (Hey Darrell) or your sister (Hi Court) or husband (Hi Chris!) or your mom or dad to sign.  Maybe even send it to the nice man at the Honda dealership who is working to get you a new car at a reasonable finance rate.  (Hi, Bill!)  Either way, 20,000 signatures isn't going to be easy, but if there's any community that can pull it off, it's us.

I think it would be pretty damn cool to have our own Google doodle.  Let's make it happen!!

October 02, 2008

A Unified Front.

United by diabetesTmana wrote a post on TuDiabetes today that hit home and hit hard. An excerpt:

"I am concerned that these different outlooks and interests could, rather than unite us in the common cause of improved quality of life and life expectancy for people with diabetes, cause public conflicts that could rob all of our communities of the resources needed to assist diabetics, both within our online communities and outside of them."

I agree with this whole-heartedly.  While I'm an in-house editor at dLife, a member of several online communities like TuDiabetes, Diabetes Daily, a diabetes blogger here at SUM, and an active supporter of organizations like the JDRF, ADA, CWD, and DRI, these things all come second to why I'm doing this in the first place:  I am a person with diabetes, a diabetic, a type 1, pancreatically-challenged ... whatever you want to call me, I have diabetes, first and foremost.

What I care about is improving my life, and our collective lives, as we live with diabetes.  I want to see support communities do just that - SUPPORT.  The very concept of different online groups pitting against one another is ridiculous.  Aren't we all working towards the same common goal?  To live long, healthy, and well-supported lives with diabetes?  To see technological improvements?  To see a cure, maybe in our lifetimes? 

Everyone has different agendas and different goals - I understand that.  But I also understand that diabetes is not a business to me.  It's my life - our lives.  And anything that can improve that life should be supported and encouraged, despite whether or not I'm a member or if I participate in a fundraising walk. 

And while I understand the business aspect of different companies and organizations, I don't like the idea of division.  I don't like the idea that three different places are working their tails off to cure this disease, but not sharing the data.  I am not sure who crosses what communication lines, but I want to know that the JDRF, DRI, and other research hubs are sharing their theories on curing this disease.  That is happening, right?  We're all working together to cure this, right?  There are so many different diabetes organizations, but where is our unified front? 

In her post, tmana said that she didn't want different communities to assimilate in efforts to "merely to present a united front to the high-priced resources and partners," and I agree with that completely.  This disease is unique to each diabetic and their loved ones, and the various communities and organizations reflect that.  But I want the diabetes communities to mature and embrace one another instead of ostracizing and battling.  It sounds altruistic, but we're not talking about t-shirts here.  This is about a disease, a serious one, that we live with every day.  And while we rally behind all these different organizations, we need to remember - never, ever forget this - that we are really rallying behind one another as a community of diabetics, regardless of whose newsletter we receive or whose network we have a username in.

The "industry" of diabetes continues to grow, especially as more and more people are diagnosed every day.  But we can't lose sight of the most important aspect of these communities and organizations:  Support.   And I value the support I get from you guys here on the blog, outside in your blogs, in-person at dinners and events, and all over the internet and the Real World as a whole.

We are all living with diabetes.  Standing together does far more than walking alone. 

September 24, 2008

Kiss Diabetes Goodbye!

Us Barton girls stick together - it's a proven fact.  And when a Barton girl emails me about her efforts to raise funds for diabetes research, I have to do what I can to help her raise awareness.  Meet Valerie Riordan, both a fellow Bartonian and a type 1 diabetic, and her campaign to Kiss Diabetes Goodbye!

Kerri:  What is your diabetes story?

Valerie:  I, like you, was diagnosed with type 1 diabetes in August 1986.  Twenty two years ago this week.  It was one week before my 11th birthday.  That was one birthday I'll never forget!  I remember seeing the doctor the day after I was diagnosed.  He told me I couldn't have cake and ice cream at my birthday party.  I was devastated.  What's a birthday party without cake and ice cream?!  And so a life with diabetes began.

It hasn't always been an easy road.  I am very thankful that early on I found many friends and a very large support group in Clara Barton Camp.  At home I was the only one in school who had diabetes.  At camp I was one of many.  I loved being in a place where everyone understood.  I wish those camp years could have lasted forever.

However, my camp days did come to an end, and when they did I suffered a little diabetes rebellion.  I didn't want diabetes, so I was going to pretend I didn't have it.  I cut so far back on my insulin that I pretty much wasn't taking any.  The same was true for food.  That was pretty much nonexistent as well.  Of course I wasn't seeing my endo at this point either.  I got very, very skinny, but in my mind I was in control.  Even though my diabetes wasn't.

Fortunately for me, there was a new endo at the office I went to.  She really helped rescue me.  She got me and my diabetes back on the right track.  She was very encouraging and didn't lecture me.  With her rooting me on, I worked really hard to pull things together.  But there were still a lot of ups and downs.

Then in August 2000 I got married.  A year later, my husband and I were ready to start a family.  Then before I could even come up with a plan with my endo, I found out I was pregnant.  I, very quickly, whipped myself into shape with a lot of help from my endo.  When I was 4 months pregnant my endo started me on my first insulin pump.  Suddenly I was in the best control I had ever been in.  My A1C went from 8 to 4.8!  I amazed even myself.  My very healthy baby boy was born in May 2002.  Then I was blessed again with a beautiful little girl in August 2005.

Now at ages 6 and almost 3, they are seasoned veterans of diabetes.  They watch me do my blood tests everyday.  In fact I had to give my daughter one of my old machines to play with.  She kept swiping mine because she wanted to do a blood test like mommy.  They know mommy's pump is not a toy, but occasionally they get to help mommy by pushing the blue button.  My daughter loves to help me out by putting my pump in my pocket for me.  They know that when mommy's blood sugar is low I need sugar fast and they know exactly which soda to get out of the refrigerator for me.  And my son amazed me when he had to get blood taken one day.  They put the needle in and he didn't even flinch.  He said he knew it wouldn't hurt because he watches mommy get it done all the time.  

They don't know my life without diabetes.  They only know their mommy has diabetes.  For all they know I've always had it.  That's okay for now, but I hope someday that will change.

For now I just do my best to take care of myself, not only for myself, but for them.  So I may enjoy watching them grow for as long as I can.

Kerri:  What is the inspiration behind 'Kiss Diabetes Goodbye'?

Valerie:  A friend of mine, who's son has diabetes, told me about Dr. Faustman and the research she was doing. (Editor's Note:  YAY Dr. Faustman!)  She was very enthusiastic about wanting to do something to raise money for this project and she wanted me to be involved in it. She had an idea of what she wanted to do, but couldn't quite seem to make it happen.
 
Also, the mom's group that my friend and I belong to was getting involved in doing community service projects.  They were looking for fund raising ideas and charities to give to. So, I began thinking of some ideas.

While I was trying to come up with something, I came across this idea on the Arbonne yahoo group that I belong to.  It seemed like perfect timing!
 
Kerri:  What makes your fundraiser different from all the other diabetes fundraisers?

Valerie:  Having a son in elementary school, I've seen many fundraisers come through my house.  I feel this fundraiser is unique because it's different than anything I've ever seen, it's affordable and it's something I would use.

Continue reading "Kiss Diabetes Goodbye!" »

September 22, 2008

Diabetes ... Period.

Diabetes and birth control ... WTF?About once a month, there's a certain spike to blood sugar patterns that is both predictable and completely chaotic - welcome to this morning's TMI post about diabetes and the menstrual cycle. 

Two months ago, when the gene for the Factor V Leiden mutation was detected in my blood, my endocrinologist and my gynecologist decided to remove me from my birth control pill and switch me to something with less of a clotting risk.  Since I decided to go on the pill when I was a freshman in college, I have always been on the standard estrogen/progesterone pill (I was on the ortho-tricyclen, then tri-sprintec, if you want a good ol' dose of TMI).  When it came to diabetes and this kind of pill, there was plenty of information out there, so I had a good idea of what to expect.

But this new one?  The progesterone only?  It's a bit of a wildcard.  I'm currently taking the Errin pill (28 days of hormones, no "placebo" pills) and these first two months have been pretty damn tricky.  I'm not sure if it's my age, the ticking of my biological clock, or just the changes in my body as I age, but this pill made my emotions run wildly.   And the information I've received on this pill has varied.  The internet (oh Internet!) informs me that the brand name version of this pill comes with a diabetes-specific warning:  "Diabetes patients - Ortho Micronor may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine."

Oh for crying out loud ... another variable?  

I was on the old pill for almost ten years, in total, and I was used to the effects it had on my body.  I was accustomed to the 28 day cycle, the guaranteed four day period, and the pre-period spikes weren't dramatic.  I actually noticed a drop in my insulin needs while I was on the placebo week, and I had a decade to really adjust to the whole process.  This new bit, with a whole new hormone regimen, has thrown my body into the spin cycle.  I can't anticipate the highs because I'm not sure if/when the actual period is coming.  (Part of the trick with progesterone-only pills is that you may not always have a period, which makes my brain melt.) 

Aside from these unpredictable start times, this seems to be the first pill that affects my emotional state closer to the end of the 28 day cycle ... for example, I came across this video of a singing little six year old and promptly burst into tears.  I had a few days of feeling amped up, over-emotional, and anxious, and these emotions had their own little tea party with my blood sugars.

I want stability.  My whole reason for being on birth control at this point is to protect my body from pregnancy, because my A1C is spikey.  So I take the pill to protect body-from-baby/baby-from-body, yet the pill itself could be contributing to an elevated A1C.  It's frustrating because pill options are limited (thank you, Factor V), pregnancy is not encouraged at this A1C, and I'm a young, newly-wedded woman with a healthy libido.  (Kerri!  Your mother reads this blog!  And so does HIS mother!  Ahhhhhh!  Go delete that!  I'll wait.)

Nope.  Can't delete it.  This is real life with diabetes, awkward bits and all.  Anyone out there on a mini-pill and seeing some numbers (and emotional) fluctuations?  I'm trying to learn everything and anything I can, with the end goal being Nice Healthy Baby Range.  Talk to me - I need some advice!

September 19, 2008

Arghhhh, Me Hearties.

The Friday Six:  September 19, 2008 edition

Holy late post, but better late than never, right, me hearties?  (Oh, this pirate crap will be the very death of me.)  Jumping right into this week's Friday Six!

1.  Yes, it's Talk Like a Pirate Day.  In celebration of this silliness, I offer you the Pirate Translator, some pirate jokes, and a Twitter avatar, courtesy of my extremely silly brother:  Kerri the pirate.

2.  The JDRF is still taking applications for the 2009 Children's Congress - but not for long!  The deadline for application is October 6, 2008, so if you and your child are interested in applying and representing the diabetes community before Congress, now is the time to apply.  Visit the JDRF website for more information.

3.  Another D-related event is the First Annual Diabetes Rockstar Cruise, brought to you by the folks at Diabetic Rockstar.  According to Sara, a SUM reader and a member of the Diabetic Rockstar crew, "The most exciting part about the cruise is that Carnival has a program called Cruising for Charity, where we will be receiving a portion of the proceeds for Fight It! our charity arm at Diabetic Rockstar.  Our funding goes to uninsured, in-need and newly diagnosed diabetics who need supplies and additional help."  Unfortunately, I won't be attending this event, but if you're interested in learning more about this cruise, taking place next May, visit the Diabetic Rockstar website

4.  And in my own personal diabetes news, I've been embroiled in the battle with Oxford Health of Connecticut for CGM coverage.  Fun.  (Sarcasm.)  I have a solid insurance representative at Dexcom who is helping me get all the paperwork together for my external appeal - yes, this is the one I have to send them a CHECK for, greedy bastards - and I'm working with my endocrinologist on a letter highlighting pre-pregnancy planning and the need for tighter diabetes control.  This is a paperwork nightmare, and now I understand why lots of people never get to this stage of the appeal, because it's so damn complicated.  BUT I am moving forward and will file this external appeal by the end of next week.  Hopefully this will overturn my previous three denials.  In any event, I'm almost positive they won't refund the $25 filing fee.  Pricks.  ;) 

5.  On the Children With Diabetes site, there's a short video about Friends For Life 2008, and you'll find a smattering of diabetes bloggers in there, including Sara, Heidi, Bennet, and me!  (And I look seeeeerious, since they caught me in the pregnancy seminar and I was all panicked ears.)  Check out the video!

6.  And I'm still woefully behind on vlogging, but I'm hoping to get a clip up here by Monday or Tuesday.  Next week is pretty nuts - I have plans for dinner in the city, I'll be at a seminar at the UN midweek, and I'm gearing up the dLife crew for our JDRF walk next weekend - but I need a little face-time.  I'm sort of short on vlog topics - any ideas from you guys?  For now, all I have is this sort of crummy quality clip from The Swell Season show on Wednesday.  I have another one, of one of their new songs, that I can post this weekend after I pull it from my KerriBerry

For now, I'm off to RI for yet ANOTHER wedding this weekend (btw, Chris and I have been married for four months as of yesterday - holy cow!) and to spend time with the family.  You guys have a great weekend!!!

September 16, 2008

Twenty Nine.

"Are you ..."The bond of diabetes between strangers.

"Yes.  Hi!  Are you ..."

"I am!"

When people who have never met before, yet know one another from the blogosphere, suddenly collide in person, it's always a fun mix of awkward, comfortable, and excited.  And last night I had the wonderful opportunity to have dinner with Karen from Bitter-Sweet Diabetes, R (who I have met several times before), and a woman I will call MW (for "MathWhiz" because she is good with numbers and I am absolutely not).

I've mentioned it before, but the diabetes connection is an instant and easy discussion, helping people who otherwise may have nothing in common to talk freely and comfortably about something that is a huge part of their lives.  Karen, R, MW, and I had trouble ordering our dinner because we were so busy chatting that we barely cracked open the menus.

What was really interesting to me was that MW was 29 years old, like me.  But unlike me, she was diagnosed 6 months ago.  I couldn't stop thinking about that.  R and Karen, also diagnosed as children, have spent most of their lives living with diabetes and for the three of us, life has always included diabetes management.  For MW, diabetes and all its bits and pieces were new to her life.  Life before diabetes for me is something I can barely remember, and it was all I could to do keep myself from quizzing her:  "How do you feel now that you have diabetes?  Do you feel like everything is different?  Do you feel like your life is completely restructured?  Do you remember sometimes that you didn't always have to do this stuff?"  I had to exercise restraint and keep myself from asking all the questions that were floating around in my head.

Diagnosed as a kid, this is just the way things have always been.  Soccer games always started with a glucose check, bedtime always involves a glass of water and a bottle of juice, and now, each skirt hopefully comes with a small, conveniently placed pocket.  For people who were diagnosed as adults, I can't imagine how their lives have changed.  Some people will say that being diagnosed as a kid is easier because you grow up with this disease and it becomes your "normal" without much effort.  Others say that an adult diagnosis is easier because you have decades without the disease, thus maybe lowering changes of complications.  From my perspective, I can't even wrap my head around an adult diagnosis.  I only know what I know.  But I am always eager to learn from others.

We sat at dinner long past when the chairs were put up at the other tables and past when the waitstaff was sitting, watching the football game at the bar.  We compared pumps, weighed out the pros and cons of different CGM systems, and when a quiet beep sounded, we all looked quizzically to see which one of us had "gone off."  The diabetes bond was enough to bring us to the table, but it was the company of kind people and easy conversation that kept us there.

September 10, 2008

Diabetes For The Day: Third Edition.

I've said it before, but I must say it again:  my co-workers are a rare breed.  They are funny, brilliant, and they actually care about making a difference in the lives of people with diabetes.  Another co-worker took the Diabetes For The Day challenge, and wrote about what it was like to test all day and wear the newest version of the "faux pump."  (This one was a definite upgrade from the Kool-aid box of yester-post.  We used a Freestyle flash meter as "the pump" and taped an infusion set, sans needle, to the back of it.)  Here's her take on a day with diabetes.

Meter, with infusion set attached, serves as a pump for our experiment.

Kerri:  You wore a “pump” and tested your blood sugar throughout your day with diabetes.  How did you feel about these devices?

Co-Worker:  At first I thought it was kind of fun to know what my blood sugar was, but after maybe the second prick, the novelty wore off. It hurt and seeing my numbers go up and down freaked me out. The pump was a huge pain. At work it wasn’t embarrassing but outside of the office, I felt like everyone saw it and wondered about me.

Kerri:  You wore the pump all day and overnight.  Was it comfortable?  How was sleeping with something attached?  Showering?  Was it difficult to dress for?  Did you almost drop it into the toilet at any point?  ;)  

CW:  It was relatively comfortable, comfortable enough that I would forget about it until I caught the tube on something and felt the yank on my “infusion point”. I was nervous about sleeping with it since I don’t own pajama bottoms with pockets but I was able to tuck it under my pillow. I slept fine but woke up with the pump halfway across the bed. I wore pants with pockets the day I had my pump so I didn’t have to worry about where I would stick it. However, I wear a lot of dresses and I could see that being a big pain. I didn’t drop it in the toilet but only because I was paranoid that I would.

The infusion set, without the needle inserted.
My co-workers put up with a lot from me, and they even wear fake pumps to help them understand.

Kerri:  Did physical evidence of diabetes (i.e. wearing the pump) make you feel self-conscious?

CW:  At work, I felt normal, even proud of what I was doing. However, the second I left, I felt awkward, especially when a friend nearly pulled it out and I had to explain what it was and what I was doing. 

Kerri:  How did testing your blood sugar affect the way you thought about food?

CW:  It made me aware of how many carbs I eat and that it is probably contributing to the fact that my blood sugar was all over the place. It also made me less likely to snack because I wanted to avoid testing.  I remember thinking, "A piece of candy is already in my mouth before I think about testing. Did I just mess up? Man, this is annoying. Diabetes sucks."

Kerri:  Did you find the blood sugar testing to be painful?  How comfortable were you with the process?

CW:  After the first or second time, I started to really wince every time I had to test. The sharp pain only lasts a moment but it made my fingers sensitive and bruised. I felt pretty comfortable with the process because I’ve tested before and I’m not afraid of blood or needles.

Kerri:  How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow?


CW:  My blood glucose numbers made me feel anxious. I was like a roller coaster, relatively high and then a few hours later, relatively low. If I hadn’t had Kerri around to reassure me, I would have freaked out.  After a bagel with cream cheese and an iced coffee with Splenda, two hours later I was at 141. I panicked. 141, that’s bad! (Right, except you have a pancreas, give it a second woman). Kerri assured me that I was fine. 

(Editor's note:  Her blood sugars hit highs of 140 mg/dl after a high carb lunch.  So "high" by her standards was a little different than my highs.)

Kerri:  Do you feel as though you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?

CW:  I still don’t think I have a clue what it must be like. I did it for one day. I didn’t change my diet, I didn’t have to take action when my numbers went out of their normal range. I can’t imagine having to test every day. Given that experience, I would rather not know any more.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW:  It made me appreciate my health tremendously. That my body functions and regulates things on its own is a blessing most people don’t take notice of.

Kerri:  Do you think other people who are close to diabetes, but aren’t diabetic themselves, should spend a day as a diabetic?


CW:  I think everyone should.

Kerri:  Anything else you want to add?


CW:  Kerri is pretty awesome. (Editor's note:  YAY!)  And diabetes sucks.  (Editor again:  Word.)

August 26, 2008

Corn On The Carb.

Elizabeth Joy Arnold(Editor's note:  Sometimes I like the title of a post so much it makes me smirky.  Man, I love a good pun.) 

Today's post is from my friend Elizabeth Arnold.   Elizabeth is the bestselling author of two novels, with a third due out next summer.  She’s been diabetic for over thirty years, and is the "proud, doting owner of two cats, a husband and an OmniPod, all of whom she considers her best friend forever."  I've had the pleasure of chatting with Elizabeth a few times and she's sharp, funny, and definitely on the level.  She offered to write a guest post for SUM, and I'm honored to have her contribution!

*   *   * 

I woke up the other morning, and my sugar was 287.  And my first thought?  Well my first thought was a word that can’t be printed on a “family” blog, but my second thought?  That I’m an idiot.  I’d eaten corn on the cob the night before (sweet New Jersey corn which has approximately a bazillion carbs), and I could only guess at the correct bolus as one cannot use Calorie King for this corn; it’s THAT sweet.  And I must’ve come up about 20 carbs short.  I know I shouldn’t really eat this corn because I rarely get it right, but you know, it is truly one of the world’s greatest foods.  I do happy dances in July when I see the cornstalks rising on local farms, and when the ears start to grow I fall on my knees in rapture, so giving it up is Just Not An Option.  So I eat and inevitably my sugar’s high, and then of course I beat myself up.   

I also despise myself for those nights my husband’s had to give me glucagon, knowing how freaked out it makes him to see me unresponsive.  (Although for some reason I never feel guilty when I catch a low myself, just think, Yay!  I get to pig out! eat 15 grams, test again and if necessary eat another 15 grams!)

But you’ve all been there, haven’t you?  You test and your number’s not where you want it to be, so you start blaming yourself for not being perfect.  I’d assume it’s twice as bad if you’re the parent of a diabetic, and–since you’re not superhuman–can’t keep your child in perfect control.  And even worse for many type 2’s who probably blame themselves for the disease itself.  The problems we face aren’t the fault of the diabetes, they’re because we’re just not working hard enough.

It can be the same with complications.  I felt guilty about my retinopathy, even though my A1C was in the high 5’s at the time I was diagnosed with it.  I blamed the teenage-Elizabeth for not being more careful, all the afternoons (and yeah, there were a lot of them) when I’d gone out with friends and not taken a shot to cover pizza or fries, NEVER testing in public because, when you’re 14 years old, exposing your blood to the world seems excruciatingly embarrassing.  Even when I was five or six, before the days of blood testing, whenever my urine tests read 4+ I’d be ashamed, and sometimes fudge the numbers so my parents wouldn’t see.

Does this make sense?  Well of course logically, it doesn’t.  We feel guilty because we do have so much control over this disease, but we all know diabetes can be a stubborn and temperamental (insert curse word of choice), trying to prove it’s stronger than all the time and energy we put into controlling it.  There are site issues and infections and stress and hormones, and just days our bodies decide to go wacky for no conceivable reason.

So what’s the answer?  Who knows?  I think it’s our tendency to want to place blame on things we're not happy about, and who can we blame for this other than ourselves?  I guess you could look at diabetes as a separate entity, pin a photo of a broken pancreas on the wall and throw darts at it, or something.  But that doesn’t work for me–I’ve been diabetic for virtually all my life, so it’s an integral part of who I am, which means hating it would be like hating my own right arm.

There probably is no real answer, except to remind yourself that you’re human, and humanness + diabetes = inevitable fallibility.  So I’ve been telling myself that I’m going to just relax when I feel like beating myself (or my meter) upside the head.  If my sugar’s high, I’ll make myself a cup of tea (or rather, take a correction dose, test for ketones and THEN make the tea.)  Put up my feet and go easy on myself until I feel okay.  The “bad” sugars aren’t bad, they’re just information I can use to make things better, and why should I feel ashamed of information?  Ashamed if I don’t test to get that information, yes, but not if I don’t like the results of that test.

So…here we go.  The truth is my sugar wasn’t 287 on the after-corn morning, it was actually 302.  (Eek!  That sounds so much worse, doesn’t it?  Even though it’s only 15 points higher?  Even writing it down was kinda painful.)  But I’m going to remind myself it wasn’t really my fault, just a mistake, and that making mistakes once in awhile is no big deal.

And dammit, I don’t care, I’m having corn again tonight.

*   *   * 

For more from Elizabeth Arnold, including information about her writing, visit her website at www.ElizabethJoyArnold.com

August 22, 2008

Friday Face-Time.

Six Until Me - Vlogging Since ... Three Weeks AgoLow blood sugars are not fun.  Over the past ten weeks or so, I hadn't experienced many lows, but I've hit more than my fair share of highs.  (And not normal highs - instead, those warm, feverish highs that made my eyes ache and suits my teeth up in sweaters.)  But the lows seemed to have returned a bit, in part to a tendency to aggressively correct highs and the lack of carbs in my house this week. 

Like this morning:  I woke up and sat on the side of the bed for a full five minutes before getting up to test. I knew I was low, but it's like I'm unable to let myself drink the juice before testing.  Instinct?  Impulse? The room was thick with a cottony fog and my head was spinning, but I couldn't function clearly enough to grab the bottle of juice from the bedside table.  I grabbed my meter, waited patiently for the 52 mg/dl to pop up on the screen, and only then would I let my hands wander towards the grape juice bottle. 

It's frustrating.  My lows over the years have become progressively stickier, taking longer to come up and with symptoms that linger far beyond their textbook-issued 15 minute window.  This week's vlog entry is about lows and their irritating ways.  (And I tried my best to speak  more slowly, but I think I'm somehow related to the Micro Machines guy.  I just talk too damn fast.) 

Click on the logo to visit my YouTube channel, don't laugh at my crappy flashcards, and let me know what kind of vlog topics you want to see covered in the future! 

August 15, 2008

The Diabetes Police.

The diabetes police are usually well-meaning, usually nice, but most often think they are the resident experts on all things diabetes. Frustrating for sure. Dealing with the diabetes police usually means supressing a sigh, carefully explaining the situation, and hoping it sinks in.  But when the person policing you is someone you love, it can be tricky.

My video post this week is a short cartoon about being hunted by the diabetes police and how Siah, a little iced coffee, and the support of some friends can make a difference. 

Stick people have it easy. They don't even have faces. And cookies fall from the sky.

August 13, 2008

Three Coffeys, No Sugar.

 
This is one of the most remarkable stories I have heard in a while – three siblings, all with type 1 diabetes?  When Lori first emailed me several months ago, I was intrigued by her site, 3CoffeysNoSugar.com.  After hearing her family’s story, I had to share it with you guys.  Lori, take it away!

Kerri:   What's the story behind your involvement with diabetes?

Lori:  Our middle child, Emily, was diagnosed with type 1 diabetes almost 7 years ago. She was 2 1/2 years old at the time, and still in diapers. She had been peeing excessively and her diapers were like bowling balls; they would sometimes fall off her tiny waist from the weight of all the urine. That was really the only symptom she had.

I worked as a research scientist in my life "pre-kids," so I have the type of personality that researches every little symptom in children.  I had read somewhere that increased urination was a sign of juvenile diabetes, so I scheduled an appointment with her pediatrician and requested a test for diabetes. I'm sure her doctor thought I was overreacting. To be honest, I was hoping that my suspicions were wrong.  When they pricked her tiny finger for a blood test, I expected the nurse to say, "Everything is normal; she must have a urinary tract infection."  Instead, the nurse said, "Don't panic, but her number is so high that this meter won't read it."  (Too late, I was already panicking!)

The Three Coffeys

So began our journey with type 1 diabetes. That was October 19, 2001.  Fast-forward almost five years, and my youngest child, Matthew (age 5), was exhibiting extreme thirst symptoms. I had checked his BG on previous occasions when I thought he was drinking too much water, and in the past, his BG levels were fine.  But this one particular morning, he had peed his bed again, and when he woke up, he was so thirsty that he went to the bathroom and drank water using a bathtub toy as a cup.  I checked his fasting BG and it was close to 200.  Later that day, our beloved pediatric endocrinologist confirmed our worst fears: he, too, had type 1 diabetes.  That was September 7, 2006.

We were devastated by this second diagnosis and remained in shock for quite awhile. Yes, we already knew how to "manage diabetes" (I use quotation marks because there are many days I think the possibility of managing this disease is a myth!!). Many people pointed out this silver lining to us: we already knew what to do!  But since we had been dealing with D for five years, we also knew all the bad parts, like severe low BG episodes, sick days with ketones, counting every gram of carbohydrate, the long-term risks, and the day-in, day-out relentlessness of it.

Fast forward seven months, and our oldest daughter, Sarah (age 11), remarked that she had been feeling very thirsty lately and wanted to check her BG.  My husband, Brian, was out running errands with the kids, so he tossed Matthew's diabetes kit to her. She checked her BG and remarked to Brian, "It says 310."  Brian scolded Sarah, saying "Sarah! Don't tease about something like that!" but Sarah held up the meter and said "I'm serious."  Brian immediately called me on the cell phone, and my first thought was that she had sugar on her fingers and needed to wash her hands first. I remember thinking, "No way, there is no way Sarah can have diabetes, too. It just isn't possible!"

When they arrived home, Sarah washed her hands thoroughly and re-checked. Now, the meter said "Hi."  I grabbed a second meter and an alcohol swab and checked myself. 470.  We grabbed a third meter and cleaned a different finger with more force. "Hi."

At this point, Sarah began crying and saying "No, no! Please don’t let it be diabetes!"  She had watched her sister cope with this disease for 5 1/2 years, and her brother for the past 7 months. She was old enough to understand the huge burden this would be placing on her life. She and Brian held each other and sobbed. (I went upstairs and called a friend for support.  We deal with grief differently.)

And that is the story behind our involvement with diabetes.
 
Kerri:  Holy cow, that’s quite a story! Can you explain the "Three Coffeys No Sugar" title?

Lori:  After Emily's diagnosis, we learned about JDRF and began participating in the Walk to Cure Diabetes. 

Continue reading "Three Coffeys, No Sugar." »

August 06, 2008

CWD: Jay Hewitt.

Photo credit to JayHewitt.comRole models are crucial when dealing with a chronic illness, and the CWD conference wasn't short on it's share of role models.  From session leaders like Nicole Johnson to the parents who take care of their children with diabetes, heroes were everywhere.  The keynote speaker at the banquet was Jay Hewitt, and he was diagnosed with type 1 when he was 24 years old. 

His speech was nothing short of inspirational.  Aside from the fact that he is in top physical condition (not to mention pretty damn handsome) and well-spoken, Jay said some things that resonated to my very core. 

"You are not alone," he said, striding across the stage and smiling down at the group of kids who were looking up at him.  "All of your friends here are doing the same thing.  I checked my blood sugar before I walked out here on stage so I wouldn't forget my own name."

He talked about his Ironman competitions, saying "I don't forget that I have diabetes, but I forget that other athletes don't."  This struck a chord in me, and made me value this diabetes community even more.  I have the comfort of people who really understand, both in my personal life and on the Internet, and sometimes I forget that other people don't have a good grasp on how diabetes really affects our lives.  (I wrote about this very concept in last month's Generation D.)   

Jay encouraged the kids to set goals and take control of their lives.  "Make the bad things that happen to you the best thing that happened to you.  Seek failure.  Think about failing.  Set goals that have failure potential.  Failure is not a bad thing.  If you've never failed, you aren't trying hard enough." 

"People ask me, 'Why do you do this?'  I do this for the finish line.  You have to earn your finish line.  You don't earn your finish line on race day - you earn it when no one's watching."

I thought about what we, as people with diabetes, do every day.  We test when we aren't reminded.  We take our insulin not because we're nagged but because we want to be healthy.  We seek out information and talk with our doctors and do the best we damn can, even when no one's watching.  This journey with diabetes isn't for show and isn't for accolades.  It's for life.

Role models are important for kids with diabetes.  They're important for adults with diabetes, too.  Thank you, Jay Hewitt, for being someone I can look up to. 

August 04, 2008

SugarCube Society.

"Just a spoonful of medicine helps the sugar go down" is the tagline for The SugarCube Society, a group of crafters on Esty run by Melody Claussen-Furry.  Her son was diagnosed with type 1 diabetes in 2005, and she and her family decided to start a JDRF walk team to raise money for research.  With all proceeds (minus shop fees) going to the JDRF, it's no wonder that The SugarCube Society is making a difference.  I had the chance to connect with SugarCube Society Coordinator Melody and ask her about the reasons, and mission, for her site.

Kerri:  What inspired you to start the Sugarcube Society?
 
Melody:  In 2005, our son Christian was diagnosed with type 1 diabetes. It was a complete shock. He asked me if he had eaten too much sugar. I explained that it didn't work like that. I played the blame game with myself (didn't I have a diabetic relative somewhere in my lineage? Or maybe it was because I had undiagnosed gestational while I was pregnant with him? Or maybe it was giving him whole milk at 11 1/2 months old?) After spending three days in the PICU with him, the reality set in and in turn, so did acceptance. We immediately focused on learning how to help him manage his disease. We were totally overwhelmed by all the information, but even more so, by watching our son administer his first dose of insulin via a syringe. He was so tough about it. I think he cried more about wearing the hospital gown than he did from the pain of the shot.
 
He's had a lot of growing pains caused by managing his diabetes. The fear of short-term and long-term complications was the catalyst for us to fundraise for the cure. We do the JDRF Walk to Cure Diabetes every year and will continue to until there's a cure, but it didn't seem like enough. So, I decided to draw on something I do to raise money. I make and sell crafts and jewelry online on Etsy (an independent crafters' marketplace). I decided to open a shop specifically with the intentions of donating all the proceeds to JDRF. I first listed some items I created, but then I called on my crafting sisters from the Sacramento Craft Mafia, who quickly gave from their own shops for the cause. We even had a Sacramento Craft Mafia team for the Walk. It was awesome - we brought in $1200!

I then called on the greater independent crafting community, which is HUGE. I posted the call for donations on forums and soon enough, people were blogging about the shop and sending in donations and even buying the goods! We've had donors from as far away as Australia. I'm very lucky to belong to a part of a creative and generous collective of crafters!

Items from The SugarCube Society
 
Kerri:  What kind of items do you sell?  Are there any special stories behind any specific items?
 
Melody:  We sell anything that is handmade. Currently in the shop we have paper goods, jewelry, buttons, accessories and what we like to call Sugarbabies, which are dolls (some are pincushion dolls) that started as plain white dolls donated by sewing geniuses Loreen Devlin and Lhay Browning Thriffiley. I then sent out an email to all my crafty girls asking if they'd like to adopt a Sugarbaby (which meant, take a doll home and embellish it at their leisure with the ultimate goal of selling them in the Sugarcube Society shop). Within an hour, I had all but two out of 14 babies adopted! Two of the babies have already sold! More are on their way to the shop. I'm still working on mine, which is a little daunting. The girls in my group make it look so easy. They're craft studs!
 
I also had to opportunity to collaborate with graphic designer/illustrator Kate Dana Detwiler of Kukaru.com to create buttons that take a poke at diabetes. She did a great job with the design. They look fabulous! She calls them Sugarbuttons, but on the site they're called the Pins and Needles button pack. We also offer them in magnet form for those who are tired of pin pricks ;)
 
Kerri:  Who are the people behind the Sugarcube Society?
 
Melody:  The crafters who donate their items. The shop wouldn't exist without the generous crafters, most of whom have been touched by diabetes in some way. I'm merely the promotional and shipping and receiving departments.

Kerri:  Thanks, Melody!!

Editor's Note:  To learn more about The SugarCube Society, visit their Etsy store.  And if you have a creative fundraising idea that you want to share, email me

August 01, 2008

Flaking Out Friday Six.

The Friday Six:  August 1, 2008 editionWhirlwind doesn't even begin to describe the last two weeks, but I'm trying to recap bit by teeny bit.  From adventures with web-camming (There you go, Google. Just for you.) to Manny Ramirez being traded, it's time for The Friday Six.

1.  A few months ago, I mentioned a Fairfield County D-Dinner meet-up, and several people emailed.  Then, because I am hopelessly disorganized and was in the middle of planning my wedding, I lost track of planning that event.  I'm very sorry, and still hopelessly disorganized.  :)  But I'm trying to set it up again, and am looking at having the dinner sometime in late August or early September.  If you are still interested, would you please drop me (another) line at kerri at sixuntilme dot com?  If it's okay with the potential attendees, I can create an email list so we can figure out the details via email.  Thanks!

2.  Also, adding a little Canadian flair to the diabetes-theme, have you heard of Team Diabetes?  Skip off to Orlando this coming January and join Buzz Bishop and the 95 Crave Team Diabetes Crew to raise funds and awareness for the Canadian Diabetes Association.  For more information, check out the Canadian Diabetes Association and throw some support to our neighbors to the north.

3.  I'm very eh about this:  Manny Rameriz?  To the Dodgers?  Granted, he's one of the best ballplayers on paper, but boy is he a "wicked pissah" (thanks, Julia).  For the real-deal details, without even a smidge of bias, check out Boston Dirt Dogs.  (And keeping with the Boston news, do you want to see what your site looks like written in the ol' Boston accent?  Here's how SUM readsDo yours!  Valley Girl may make you laugh out loud for real.)

4.  Total side note:  On my way to lunch, I heard "Crazy In Love" on the radio.  As I was leaving lunch, I heard "Ring The Alarm."  I love Beyonce.  She is my musical guilty pleasure.  Please share yours, so I'm not forced to have my face burning in shame all alone.  I also like Yanni.  Help!!!

5.  In some TuDiabetes news, there's a new video about seeing diabetes through the eyes of children.  As a former child with diabetes (now a pseudo-adult with diabetes), this video helps me remember how I saw diabetes, and how I saw myself as a result, when I was small.  Click here to watch the video on YouTube, and click here to get involved with the inititative

6.  Lastly, because I bought a webcam and have nothing but time on my hands (What? Lies, Kerri - lies!), I'm debating starting to vlog (video blog) here on SUM.  Only - here's the problem - I have no CLUE what to talk about.  I'm much more the wordsmithy-type than the talk-to-the-camera type.  But I love meeting other diabetics and am always so surprised when I hear their voices or see their faces.  Words are just one dimension to our personalities - the way someone sounds or the way they laugh really tells you alot.  I'm curious to hear what you guys would be interested in (or should I just give the camera to Siah and let her do her thing?).  In any event, forgive me for talking too fast, moving too much, and using lions for my own personal gain.  (The password is "sixuntilme")

Chris and I are excited to host Batman and her boyfriend this weekend - yay for friends who will drive all the way out here! - so have a good weekend and I'll see you Monday!  :)
 

SUM Tags: , , , , ,

July 28, 2008

CWD: My First Time.

My diabetes greeting card.Up until last week, I had never been to a CWD event before.  I had heard about them through the diabetes community, and I knew that many of the parents who were reading my blog were members of the CWD forums.

Now I know why people are so into CWD.  It's like coming home.

These people get it.  I've said that before about my best friends, who do their best to understand the subtleties of diabetes, and about my wonderful co-workers, who go to great lengths to know what a real "dLife" might be like. But the parents and children at the CWD conference are the ones on the front line, the folks who are living with this disease every single day, either as the diabetic themself or the caregiver of a PWD.

The CWD Friends for Life conference in Orlando is filled with parents who care.  With kids who boop beep boop and shunk and who know the carb content in their favorite breakfast cereal.  With grandparents who can proudly program a pump, or siblings who know how to treat their brother or sister's low blood sugar.

It's also filled with some of the diabetes medical community's finest, with Fran Kaufman, Bruce  Buckingham, Richard Rubin, and Barbara Anderson among the faculty.  I attended several focus groups about diabetes and pre-pregnancy planning, CGM use, and the artificial pancreas.  (The groups deserve their own posts, so more on those later in the week.)  I also had a chance to meet with some of d-blogging's most friendly faces, like Manny from TuDiabetes and Sara from Moments of Wonderful

The first focus group I attended was about Diabetes and the Web, which has people talking about websites they frequent for their diabetes care.  A little girl sitting in front of me, about 8 years old and with an insulin pump clipped to her shorts, said "I visit dLife to find recipes I can eat."  My heart swelled with pride. 

They asked us to envision cards we'd receive from our endocrinologists or CDEs.  "What kind of card would you want to receive from your doctor?"  Even though the group was dominated by children, there were several adults (myself and Manny included) who grabbed for the crayons with vigor.  

The front of my card read:  "Do you have diabetes?"

Inside:  "You are still YOU."

After sharing our cards with the group, the leader asked when we'd want to receive these cards.  On our diagnosis anniversary?  After we have an A1c done?  When we're feeling frustrated?

"I'd take these cards anytime.  Randomly, monthly ... daily."  I said. 

A father in the group laughed.  "Me, too." 

I've said it before and I'm sticking with it:  Diabetes doesn't define me, but it helps explain me.  And attending this conference drove that point home.  I was one of many, united by a common medical bond, but I was still me.  A pump in my pocket, a meter in my bag, and two decades of diabetes under my belt - but I was still me.  And I wasn't alone.

Thanks for the warm welcome, CWD. 

(I have a Flickr set of the conference online now - feel free to poke through if you have time.  More on the conference to come!)

SUM Tags: , , , , ,

July 21, 2008

Blue Bird of Happiness.

We drive.  Friday night, after taking in the new Batman movie, we hopped in the car late at night and drove home to RI.  (Late-night driving means less sleep but also means less traffic, and we'll take the latter, thanks.)  Saturday morning had me at the beach with a few of my college roommates, then dinner out with family on Saturday night, then breakfast with Batman (my friend, not Christian Bale), then a cookout at my mother's house on Sunday afternoon.

It sounds like a lot of driving because it IS a lot.  Chris and I try to connect with as many of our friends and family as possible when we come home on the weekends because we don't have the opportunity to see them for several weeks on end.  Connecticut, though filled with career opportunities for us both, doesn't have much in the way of family.  And lately, family and friends are something I've been missing tremendously.

I've hit a very rough patch, diabetes-management wise.  My A1c came back the highest it's been in five and a half years, and I didn't take the increase with any grace at all.  Even though I can attribute the rise to wedding chaos and honeymoon laziness, I still felt so disappointed.  In addition to an elevated A1c, I've also been diagnosed with a disorder called Factor V Leiden, which can cause blood clots and has forced me to change some of my routine (read: birth control pills are now a no-no).  Despite the fact that this disorder is unlikely to cause problems, it's still a new blip on my health radar and contributed to my feeling of "eh" last week.  I was feeling overwhelmed with health concerns, frustrated with insurance issues for the Dexcom, and pretty damn grumpy.  Crumbs Morrone ... er, Sparling.  Crumbs Sparling.

I needed some time with friends and family this weekend, to help take the edge off a roughish week.  And it worked.  Yesterday afternoon, I was hanging out in my mother's yard, taking pictures of her garden.  My mom is very whimsical and a little silly, and her yard is crammed with flowers and these strange little garden critters that she finds from the Christmas Tree Shop:  small ceramic ducks, little turtles, and garden gnomes.  It sounds like her lawn is littered with trash, but these creatures aren't just flung about haphazardly.  They're carefully placed, hidden between hydrangea bushes and underneath rhododendrons.  You have to look for them to find them.

Bluebird of Good Health 

I came across a big, fat, ceramic bluebird yesterday.  It was in her front lawn and guarding an azalea bush.  

"Bluebird of happiness!"  My mother came by, checking out what I was photographing.

"I see that."

"Well?  Doesn't it make you happy?"

I thought for a minute.  I felt revitalized after being socially reconnected with my friend and family.  I felt ready to make the medical changes necessary to accommodate the new condition and to take change of my diabetes management once more.  I felt loved.  Supported.  Happy.

"It does, Mom.  That fat bird totally makes me happy."  She grinned at me. 

Onward, right?  All I can do is get over the bad news and move forward towards something better.  Good health is one day at a time.

July 03, 2008

Diabetes For The Day.

Working in a diabetes company means understanding the culture and responsibilities of a person with diabetes.  This is easy for me, because I'm a person with diabetes.  But not everyone at work is living with diabetes.  My fellow employees work with diabetes every, but they don't live with it. 

People at work have taken a very active interest in becoming more familiar with the diabetes lifestyle - more than just understanding the "facts" of this disease.  They ask questions about the pump, or different insulins, or what a CGM does.  They ask how things "feel."  One of my co-workers decided to have "diabetes for the day," which included him testing his blood sugar several times and wearing a pump infusion set (minus the cannula - just stuck to his abdomen for "the feel" of it) attached to a makeshift "pump."  He spent the day thinking about carbohydrate intake, blood sugar results, and the constant presence of a device, in efforts to better understand the community he's trying to help.  Here's his feedback:

Kerri:  How did testing your blood sugar affect the way you thought about food?

Co-Worker: 
I'd love to say that I'm a changed person and that I look at the world through different eyes having worn the shoes of someone with diabetes for a day.  Truthfully I think it was the inconvenience pain of testing that caused the greatest hesitation and re-jigging  for me.   The event that caught me most off guard was when I returned home from work and passed up having a cookie before dinner.  My inner dialog went something like,  "Mmm cookies.  Wait, I'd have to test first.  Kerri said I had to test before eating anything.  Hmm.  I'm going to be eating dinner in an hour so I'd probably have to test twice.  BUT.  If I have it with dinner, I can test just once ... I think I'll wait."

I have to say, all those fake sugars [note from Kerri - he's talking about artificial sweeteners] are really yucky and drinking mostly plain water is no fun.   Give me my plain sugar in my coffee.  If I had to inject insulin (saline) I think it might have really changed the way I thought about food because it would have forced me to do more calculations and understand what I was putting into my body (both the food and the insulin).  With just testing, I only had to make simple yes/no decisions.  Maybe next time I'll get wired up for a pump.  Shooting actual syringes saline ... am I getting paid to do this?

Kerri:  Did you ever feel inconvenienced by the presence of the meter or the "pump?"  How so?

CW: 
Having the meter/pump on my belt wasn't too conspicuous as I think it looked a lot like a geeky cell phone belt clip.  (And I'm pretty geeky.)  However, I did almost drop it into the toilet once.  Unlike a cellphone, it's wired/tubed to me which created a bit of a juggling act and not one you're likely to see at the circus.  Thankfully all my years of playing frisbee came in handy and I was able to prevent a very embarrassing accident.  (Since it was just a meter it wouldn't have been too costly.)

I also think that if I wasn't at a place where we talk about diabetes everyday, I might have been a bit more self-conscious.

Kerri:  How did the blood glucose numbers make you feel?  Did you associate any "guilt" to a higher number?  Did any of your results make you raise an eyebrow?

CW:
  Since I knew that my body could "handle" the swings I wasn't too worried and thus not too guilty.  (I had pizza for lunch and pasta for dinner ... and two cookies.  Something that I don't think would be part of a typical menu for someone who was managing their BG.)  I did have some pretty high swings and it did make me realize that keeping your BG within an acceptable range is not a passive act that can be programmed like a thermostat and left on auto-pilot.  There's a constant feedback loop that occurs and I don't think a CGM talking to a pump would be able to easily and reliably handle the delicate balance.  (And that's coming from a programmer.)

Kerri:  Do you feel as though  you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?


CW: 
I think what I experienced is just the tip of the proverbial iceberg.  I was forced to stop and think a few times, but I didn't have to pay the "penalty" of being careless and I knew in the morning it would all be over.  Sort of like playing with tasers without the batteries.  "Don't fake taser me, Bro!" 

I am a bit curious as to what a high and low are like.  Is it similar to being hungover?  Like having a bad flu?  Is it worse than a papercut between the fingers?  (I really hate paper cuts.  How can something so small hurt so much?  I'll inject saline before getting a papercut.)  The insulin pump is still very intriguing to me.  Can you feel the insulin going in?  Can you "feel" your BSL/energy change?

No amount of simulation will ever help me understand what it's like to not be able to just disconnect.  There is no vacation from diabetes.  It doesn't sleep when you sleep.  I can't even imagine that.  Even as I type this, the concept is so foreign to me.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW: 
I've been very fortunate and have been very healthy all my life.  I have my scars and stories, but overall I can't complain.  I don't think the experiment changed how I thought of my own health.  I think I appreciate how amazing the human body is to keep everything working properly, but I don't think I'll change any of my habits as a result of the experiment.  Don't get me wrong.  I'll continue to watch my weight and try to eat healthy food.  (I haven't been to a fast food joint, except to use the bathroom, in over 15 years.)   But it's about my general health and well being, and not specifically as a way to prevent type 2 diabetes.

The experience will stay with me longer than the lancet marks on my fingers, but I would not classify it as life-altering.  Something well worth the time and I'd recommend that other participate in the experiment.

July 02, 2008

Dexcom Tips.

Dexcom and an old Trot Nixon shirt.  Almost classic.Last Thursday, my local Dexcom teaching nurse came to visit me here at dLife.  I think she's fantastic, but I'm also tremendously biased.  Little back story:

When I was first diagnosed, I was a little peanut of a kid.  My parents had no experience with diabetes or how to handle type 1 being a part of their child's life, so they looked for help within our town.  As fate would have it, one of my father's cousins (one of those once-removed cousins added to the family by marriage sorts of things) had a son with diabetes.  Jim was diagnosed when he was 18 months old, his mother, Eleanor,  was a registered dietitian and had spent time as both a diabetes professional and the mother of a kid with diabetes.  Perfect guide for my parents, right?  Right.  For years, my mother and I traveled to Joslin with Eleanor and Jim for our back-to-back endocrinologist appointments.  And when my parents would go on vacation, I would stay with Eleanor and her family because she knew how to take care of me.

So imagine my surprise when I find out that the CT/RI Dexcom teaching nurse is Eleanor!  Holy small world.  And holy long story, sorry about that.

Anyway, Eleanor came to visit me last week and brought me two spare Dexcom sensors.  We covered a lot of the technical bits about Dexcom'ing, as well as some tricks o' the trade.  My session with Eleanor helps me answer some of the reader questions I've received over the past few weeks.  Like these:

Q:  Can the sensor get wet?  I used the Dex3 and had to wear the shower patches.  They were terrible!


Yes, the Dexcom 7 sensor can be worn in the shower and the pool and any other soggy environment.  You don't need to wear those wild shower patches that eat your dermis anymore.  But here's something I didn't know:  When you are ready to put a new sensor on, you should clean the underside of the transmitter with an alcohol swab or similar.  I thought you weren't supposed to get this transmitter wet at all, but it turns out that a good swabbing can remove any soap residue, body lotion, or other random smudgy bits that may worm their way underneath.  This cleaning process helps retain the integrity of the transmitter.  

Q:  I've seen you wearing the sensor on your arm.  Aren't you supposed to wear it on your abdomen?

Ahem - according to the official Dexcom guidebook, "Choose a site on a fatty area of your abdomen (belly) to place your Sensor.  You can choose a site above or below your beltline. The best insertion areas are usually flat, 'pinchable,' and relatively free from where rubbing can occur (i.e., pant line, seatbelts)."  However, and off the record, the sensor can be worn anywhere there is a good amount of fatty tissue so you can grab the ol' interstitial fluid easily.  For me, I have a lot of placement options.  I've been wearing the sensor on my arm because that keeps it away from my waistline (I hate wearing any of these devices on my abdomen) and doesn't encounter much friction throughout the day.

Q:  You always talk about how you want your diabetes to be "seamless" and you've talked about how you hide your insulin pump so that it's not part of your wardrobe. So, my question is, how come you don't wear your sensor on your stomach or thigh?


This reader caught my recent dLife column, where I talked about some people staring at the Dexcom sensor on my arm.  This is a very good question. I wear the Dexcom sensor on my arm because it stays put there best.  The sensor is less apt to become peeled back and doesn't catch on my waistband.  It is also less likely to become loose and therefore irritating.  I don't feel comfortable wearing any diabetes devices on my stomach, and my legs are too muscular for the sensor.  Also, the sensor needs to be away from any insulin pump infusion set and from big pockets of scartissue.  So ... my arm is the best out-of-the-way location for Dex and still have it working correctly.  I'm trying to find the compromise between "external symptom" and "using available technology."  People stare sometimes, which makes me bristle a bit, but I would probably stare, too.  It's a different look for your average twenty-something.  ;)

Q:  Can you get more than seven days from one sensor?  Or are you just sticking $60 on your arm, getting a week from it, and then ripping that $60 off?  I can't imagine!

I haven't had the opportunity to restart a Dex7 sensor because the past few have melted off me before the seven day point.  On this last sensor, Eleanor applied some SkinTac on the sensor gauze and it has held steady through daily showers, daily workouts, and this blasted heat.  I have heard that you can "re-queue" a sensor by "pretending" that you've installed a new one.  I will give this a go next round.

Any other CGM-type questions?  Send 'em to kerri (at) sixuntilme (dot) com. 

EDIT:  Again, comments are being problematic.  Hopefully they're fixed now.  I need a new webhost, damnit.  Thanks for letting me know, Rachel! 

June 12, 2008

Job Perks.

Should be a fun time!I've worked plenty of crappy jobs (none as crappy as the Poopsmith, but pretty crummy nonetheless), so I don't feel bad at all about enjoying my current job at dLife.  Aside from terrific co-workers who both inspire and entertain me, a quick commute, and the opportunity to be creative, I have the chance to make a difference in both my diabetes life and the lives of other people living with diabetes.  (Not to mention the traveling Frog.)

Oh, and they've decided to send me to the CWD conference in July.  :D  I am very excited!

I've never been to the Children With Diabetes Friends for Life conference, but I've heard some great things about it.  Chris and I be traveling on Tuesday and arriving early in Orlando, then attending as many of the events that we can.  Any suggestions on what focus groups are expected to be the most informative?  What are you guys most interested in hearing feedback on?  And if I have the chance to embroider my name on Mickey Mouse ears, should I do it? 

Maybe ears that say "Sausage."  I wonder if she'd wear them.

If you are attending the conference, I'd love to hear from you.  I'm excited at the opportunity to meet some of the people I've been communicating with over the past three years, to see what kinds of events are offered, and to walk into a room filled with the friends and family members of diabetics and think, "Everyone here understands."

June 04, 2008

Where's Waldo?

Holy crap - this made me laugh out loud.  Part of yesterday's post involved Nick naming my new insulin pump "Waldo," since it's always hiding and people are trying to find out where it's stashed.  I liked the name and thought it was pretty damn funny.

So this morning, I received an email from Michelle.  She attached this:

Where's Waldo?  Oh wait, he's right here.

Which made me almost lose it.  I had to share.  Where's Waldo?  Oh wait, he's right here.  Waldo the Insulin Pump.  I love it. 

June 02, 2008

Mr. and Mrs. Sparling.

Photo courtesy of Erick Browne Photography.  All rights reserved.The night before my wedding, NBF and Batman holed up in a hotel room with me, keeping me company and aiming to keep me sort of sane. 

"What if I fall on my face while walking down the aisle?  You guys know me - this is sort of likely."

"You won't fall on your face, Kerri."  Batman stuck her tongue between her teeth as she helped to touch up my nail polish.

"I could.  This is me we're talking about here.  I know I'm marrying the right guy and I know I love him, but I'm scared to death I'm going to take a digger in the middle of the church."

"You.  Will.  Be.  Fine."

I fell asleep with a racing, panicked mind and my nerves all bundled up. 

But the next morning, I woke up to bright spring sunshine streaming in through the window and a feeling of serenity.

"I'm getting married.  Today!"

NBF was throwing her clothes into her bag.  "You ready, future Mrs. Sparling?"

I grinned at her.  No more nerves.  I was a tumble of excitement and unexpected calm.  "Let's roll."

The morning cruised by on fast forward.  We stopped for iced coffee.  We filled NBF's car with sequined shoes, hair curling irons, make up bags, and bridesmaid dresses.  And since it was nine o'clock on the morning of my wedding, of course we blared "Baby Got Back" and sang along as loudly as we could.

We met up with my mother, my cousins, and the fine ladies in my bridal party at my aunt's house, where we spent the morning drinking coffee, doing our make up, and having our hair coifed by The Fabulous Liz.  Even though everyone was twittering about and fussing over different details, the world still had this warm, calm center to it.  The whole morning was a whirlwind, ending with my mother helping me into my beautiful , ivory-colored wedding gown and all of us scurrying into the white stretch limo outside of the house.

In a blink, we were at the church.  My bridesmaids guided me down a long basement stairway so I could enter the doorway at the bottom floor of the church, keeping me from being spied by my handsome groom.  Everything was moving so quickly - suddenly I found myself at my father's arm.

"It's time.  Are you ready?"

I nodded.  And the music swelled.

Every moment of our wedding is a crisp and fine-edged memory in my mind.  I remember seeing my college roommates in the church pews.  I remember my mother's face smiling at me as I walked by.  I remember seeing Chris as he stood by the altar and how my whole heart ached with happiness.  I remember our flower girl and ring bearer, nervously grinning as they walked down the aisle.  I remember my MOH's face as she adjusted the train of my wedding dress.  I remember taking his hand and promising to love him and cherish him for the rest of my life.  I remember him taking mine, vowing to love me in sickness and in health, just as he does now. 

And I remember how "I do" melted like cotton candy in my mouth.

"I now pronounce you husband and wife.  Go ahead and kiss your bride."

We kissed.  "We're married!"  We laughed.  We posed for pictures.  We rode in the limo by ourselves and drank champagne and fell in love once more.  We walked in to the reception hall as Mr. and Mrs. Christopher Sparling.  We danced our first dance to "The Luckiest."  We listened as his best man and my maid of honor toasted to our love.  We ate delicious food and cut red velvet cake with butter cream frosting.  We watched as my nephew did his seven-year-old version of break dancing by himself on the dance floor.  We took more pictures, only plenty of these were damn silly. 

With my insulin pump tucked safely and quietly in a pocket at my hip, we celebrated the biggest day of our lives surrounded by our families, friends, and loved ones.  I am so, so blessed to be the bride of this man who keeps me safe and makes me feel loved and takes care of me in a way that keeps my mother from worrying. 

My wedding day was the proudest moment of my life.  I am so happy to be his wife.

(And I did not fall on my face walking down the aisle.  That, my friends, is certainly saying something.)

April 30, 2008

AccuChek Spirit Pump: Help!

Hey guys.  I'm sending out the BatSignal for a reader who is looking for some information:Sueprfriends, unite!

Hi Kerri,
 
I'm looking for information on the AccuChek Spirit pump.  I currently wear a Cozmo insulin pump and LOVE it, but my new insurance only covers Medtronic and Disetronic insulin pumps.  I have worn a MiniMed pump in the past, so I know what that's like, but I'm looking for any user experiences or advice on the Accu-Chek pump.
 
Thanks very much!
Jenni
If you are an AccuCheck pump user, or if you have any advice regarding this pump, please leave some love for Jenni.  Let's show her what this community can do (which is to show what real life with diabetes is all about)! 

April 25, 2008

Friday Six: The Short List.

The Friday Six:  April 25, 2008 editionNo intro.

1.  Last night I attended the premiere screening of Life For A Child in NYC, a moving documentary profiling children with type 1 diabetes who are living in developing countries.  I'll have a write-up for this next week, but suffice to say that there is so much work that needs to be done, both around the world and here at home.  I ended my evening with a low blood sugar as I left the screening and with mounting frustration on how much worldwide attention diabetes needs, yet doesn't receive.  More on this next week.

2.  The dTOEs that were sent in are AWESOME!  I'll be posting the dTOEs, Second Edition on Monday.  :)  If you have any others you want to add, pop them in the comments section for yesterday's post, or email them to me at kerri [at] sixuntilme [dot] com.   

3.  I spent at least a few minutes siphoning through this list of Smurfs to figure out which one I would be.  I think I'm Jokey Smurf (or Schtroumpf Farceur ... are they French or something?) - I love the idea of his alter-ego, the Masked Pie Smurfer, "a cloaked figure known for sneaking up on other Smurfs and throwing pies at them."  Which Smurf would you be?

4.  Speaking of blasts from the past, one of my favorite books growing up was The Monster at the End of This Book, Starring Lovable, Furry Old Grover.  Come on ... you remember this, don't you?  If not, here's a slide show of all the pages in this book.  I remember being terrified of turning the pages when I was little, entirely unsure of what the monster was going to look like.  I read it to my nephew a few years ago - as we turned the pages, he looked up at me with his big, blue eyes, put his hand on my wrist, and whispered, "Auntie, please don't turn the page, okay?"  The world keeps spitting out all this garbage but at least children's books are still wonderful.

5.  Want to be on dLifeTV?  We're looking for people in good health who have lived with type 2 diabetes for 25 years or more. Send our production team an e-mail and tell us about yourself, including your name, age, contact information, number of years living with type 2 diabetes, plus your thoughts on how you have handled your diabetes, especially what you have done to maintain good control.  Thanks in advance!

6.  It's going to be a long weekend, but not exactly a relaxing one.  Tomorrow night we have the pleasure of attending the wedding of two friends in Brooklyn, then a Cirque du Solelil show on Sunday night, then we're spending Monday in RI to finish up last-minute wedding stuff like finalizing the floral arrangements, the marriage license, our marriage classes, and my final wedding gown fitting.  May is right around the corner, and I couldn't be more excited.  :)

Have a stellar weekend, and look for the dTOEs on Monday!   

April 24, 2008

Diabetes Sniglets: dTOE II ?

Waaaaaaaay back in the day (like in March of 2006), I wrote about the special language that diabetics, and the people who love us, use every day.  Phrases like "I'm so high," make people encourage you to take an injection instead of taking a drug test.  Or terms like "rage bolus," when you take a massive dose of insulin as response to the frustration and annoyance of a prolonged high blood sugar.  Or the ol' SWAG (Scientific, Wild Assed Guess) bolus, where you use more instinct than data to bolus an unexpected or uncalculated meal.

Just like the genius IT guys in my office, we've got our own unique jargon here in the diabetes community.  We walk the walk and talk the talk!  I'm looking to compile another edition of the Diabetes Terms of Endearment (dTOE?) - and I need your help again.  If there's a special diabetes-related phrase, or an inside joke, that you and your family use, send it to me!  Or leave it in the comments section. 

dTOE:  Second Edition?

Either way, I'm looking forward to laughing my arse off and nodding my head in recognition as I read the dTOEs.  (The "Daylight Savings Time" one gets me every time.)

March 28, 2008

The Friday Six: Weekend Prep.

The Friday Six:  March 28, 2008 editionShannon tells me it's snowing like 8 inches up in her neck of the woods.  My mother reports rain in Providence.  And it's chilly with a side of potential frogs raining down here in Connecticut - what the heck is up with this weather?  Here's the Friday Six for this bizarre-weathered Friday.

As I stated in my earlier post today, Children With Diabetes is now a part of the Johnson & Johnson family of companies.  See it ... look closer - it's diabetes, right there on the map.  Nice.  I'm excited to see how this will affect the diabetes community on the whole.  Big news!

In other diabetes-related news, April 14th is Raise Your Voice: Type 1 Diabetes Awareness Day!  There's a Facebook event if you haven't seen it already (and it's not hard to "attend," seeing as how this is a virtual event.)  Now that the troops are rallied, all we need is a logo ... and here's where you come in.  Bill over at EatSmart has offered one of his nutrition scales as a prize for our logo contest - that's a $75 value!   Here are the rules:

  1. Design a logo (the size cap is 200 x 300 pixels). 
  2. Include the event name:  "Raise Your Voice!" 
  3. Have fun designing it.
  4. Maybe have a snack while you're designing - apples are tasty.   
  5. Email it to me as an attachment to kerri [at] sixuntilme [dot] com with the subject line "LOGO CONTEST" no later than 3 pm on Thursday, April 3rd
  6. Grin because it's done and submitted.

That's it.  The winner will be decided on Friday morning and Bill (thank you, Bill!) will send you an EatSmart nutrition scale of your very own.

And one last thing on the scale:  After I posted my review of the EatSmart nutrition scale yesterday, Bill over at EatSmart gave me a call and told me that if you guys want to order your own scale, enter "KerriSentMe" into the coupon field during checkout on the EatSmart site and receive 10% off your order.  I thought that was right-kind of him - so if you're thinking about ordering a scale, score your 10% off, damnit!

I know many of you have seen the Gaping Void cartoons (this one is my favorite today), but did you know you can get business cards with these quippy little suckers on them?  I was unaware.  Now I am intrigued.  I like my business cards, but it would be kicking to have something so bizarre.  Food for thought.  And just as a sidenote:  I love these cartoons. 

Tomorrow is my wedding shower.  (Yes, I know I'm not supposed to know, but since I live out of state, I needed to know what day to come home.  So I know it's tomorrow.)  I know I need to be there at noon-thirty.  And I know it will be fun, because with my mother and my terrific bridesmaids at the helm, it's sure to be an awesome time.  Everything is happening very quickly now:  the bridal shower, then bachelorette party, then the last meetings with our vendors, then the rehearsal dinner, then the wedding ... I'm afraid if I blink, I'll find myself on the plane bound for our honeymoon.  I wish I could slow this time down so I could actually enjoy it!  Instead, I will blog it.  (This may be the mark of a blogging addiction.)

And six.  Ahhh, the final moment for me today before the weekend cracks wide open and swallows me.  This morning, at about 3 am, I woke to the sound of scritch scritching, coming from the bedroom floor.  I ignored it at first, thinking that it was just one of the cats lolling around.  But it came again, louder this time:  scritch scritch.  So I leaned up, looked to the floor, and saw Siah completely wrapped up in toilet paper.  She had completely unraveled the roll from the master bathroom, dragged the bulk to the middle of my bedroom, and made a nest in it.  Like an enormous hamster. 

I do not need a dog.  I have a Sausage cat who laughs at me.

March 19, 2008

Dear Medtronic.

These are the sneakers I have.  Just as a sidenote.Dear Medtronic,

How are you?  It's been a few weeks since we've touched base, but I wanted to let you know that my new insulin pump is chugging along just fine at the moment.  It's finally a bit scuffed and I have all my new carb ratios and basal patterns plugged in there - just like the old one.  So thanks for making such a great pump and for having a commendable level of customer service.

Why am I sucking up a bit?  Well, this is a little awkward.  I'm really disappointed in something I've read today.  I've always liked you as a company and I've always been proud to be a part of your user base.  But I received an email from Marcus last night that upset me. 

He sent me a link to the Medtronic Global Heroes campaign, aimed at highlighting the achievements of runners with diabetes.  According to your website:  "A Global Hero is a runner. An inspiration. A person whose life has been improved by medical technology."  Aside from earning some recognition and plenty of product benefits, the Global Heroes will also have this option:  "Medtronic Foundation will donate $1,000 on behalf of each Global Hero to a non-profit patient organization that educates and supports individuals who live with the runner’s condition."

What an awesome opportunity!  I know plenty of strong, talented runners from the blogosphere.  Like Marcus Grimm.  And Anne.  And Ed.  People who are conquering their condition and pushing themselves to higher levels of physical fitness and health.  But only if they fit the specific criteria.

Because you have added a stipulation this year that states: "Runners 40 years or older with insulin pumps and who have had diabetes for more than 15 years are ineligible."

Medtronic, would you care to explain to us how you justify leaving them behind?  Your Global Heroes program is inspiring and can really show people with diabetes how limitless their lives can be.  I understand the need for a CYA caveat, but to forbid them to even participate?  Taking away their option to earn funding for their chosen charity?  That's shameful.

Medtronic, you make a great pump.  But you've made better impressions. 

-- Kerri. 

March 13, 2008

Beyond Insulin.

Moving away from home has been tough. 

Almost two years ago now, Chris and I moved from our respective hometowns in Rhode Island and ventured out here to western CT.  Work for both of us has been productive and has advanced our careers, but socially it's been a little lacking.  We do have each other (and he is my best friend and fiance, so we can actually hang out and have fun), and Chris and I have explored so much of our new town and surrounding areas.  We've dined at great restaurants, found some fun new places, and created bits of comfort in this strange new place. I still really love my job and my co-workers have gone from "office mates" to people I feel are my friends. 

But at least twice a month, we go home to RI and hang out with our friends, visiting Boston or Providence or teeny seaside towns like Watch Hill or Narragansett.  Even though CT has great job opportunities and the excitement of NYC just a quick train ride away, Rhode Island and its sandy beaches will always be home.  And my friends will always be my friends, whether I live in the same town as them or I live thousands of miles away. 

I realize that RI is only about three hours away from our home in CT, but sometimes it feels like we're living out on the moon.  It gets a little lonely at times, and I've missed my friends and family tremendously over the past few months in particular.  As the wedding draws nearer, my bridesmaids call often and my mother and I talk several times a week, but I miss having these conversations in person.  Truth be told, I'm homesick these days and I miss my friends to the point where I'm starting to whiiiiiine about it.

Blogging, and the internet in general, does provide a certain social outlet.  I really enjoy writing and am grateful for all of the people I've "met" in the last few years.  But there's something sterile and a bit detached about the internet.  I feel very lucky to have met people like Nicole, Shannon, Julia, and Christel who have really stepped past blogging buddies and into the parts of my life that are beyond diabetes.  For me, it's about building relationships that actually mean something, not just collecting "friends" like they're baseball cards.  And so much of that real connection is possible within this community.

Last night, I had dinner with two women who I connected with through the Fairfield County chapter of the JDRF.  One I've met before and the other is actually the sister of a guy I work with here at dLife.  (Everyone here has some connection to the disease.)  It was terrific to hang out with new people - in person! - and realize there was way more than diabetes to talk about.  The three of us tossed around the idea of a Fairfield County monthly dinner or something, and I'm totally game.  So ... long blog post short, if you're living in the Fairfield County area and would like to join us for a monthly "It's More Than Diabetes" (or something like that) dinner, drop me a line at kerri [at] sixuntilme [dot] com.

In the meantime, I'll be analyzing how much time I spend online and how I want to reposition the internet as it relates to my life.  Life is short -- too short to spend more time face-to-face with a computer instead of ... a face. 

Too linked in?

March 12, 2008

Infusion Sets.

I've made it pretty clear that I'm an advocate for using my thigh to host my insulin pump infusion sets.  I like having it placed lower on my body, keeping it a bit incognito, even from me.  It doesn't rub against the waistband of my pants, it doesn't press against Chris when I hug him, and it doesn't get in the way when I'm at the gym.  Overall, the thigh placement keeps my blood sugars stable and my pump tucked away most easily. 

I'm a fan. 

But there are times when it's a little tricky, too.  Take this weekend:  I spent the majority of the day lolling around the house and traipsing around town in jeans, vs. the dress pants or skirts I wear at work.  The jeans aren't baggy or loose, so the denim fabric is pressed pretty snugly against my legs.  Over the course of the last few months, I've noticed that wearing jeans while wearing a thigh site leaves my infusion sets a little battered.  The white edging gets frayed and stained with blue fibers.  Eventually, if I wear jeans for a few days in a row, the site gauze starts to peel back a little, threatening to dislocate the site entirely.  

Insulin pump infusion set, post-jeans.
The infusion set, hanging out on my right thigh. 

Aside from the times I've almost ripped the site out while getting dressed, this jeans thing is the biggest problem.  To help keep the site from bailing before its time, I will stick a few pieces of medical tape around the edge of the gauze.  The tape ends up frayed and blue, but the site remains intact.

I've been thinking about doing some site rotations again - maybe trying out the arm site again or perhaps making an attempt at the (gasp) rear end location.  I'm such a creature of habit, though, a little shy to try something away from my regular routine.  Are you guys using some creative locations for your infusion sets?  (Aside from the breasts - I cannot bring myself to try that one.) 

(Also, THANK YOU for all of the great music selections yesterday.  I have been at Amazon all morning long, picking out CDs and previewing stuff on Seeqpod.  I feel like I've been completely revitalized.)

March 11, 2008

A Good Tune.

I even own some Yanni.  I know...For as far back as I can remember, music has been such a crucial part of my little world.  When I was a little kid (we're talking like six or seven years old), I can distinctly remember listening to my mom's Elton John tapes on my Fisher Price tape player.  I also remember buying my first tape cassette when I was 10 - Beethoven's 9th Symphony.  I played that tape over and over until it wore out and the actual cassette tape warped.

In my mind, my life has a constant soundtrack.  If I trip and fall over my own feet while walking downtown (often right in front of a coffee shop window where people are sitting and, of course, looking out), I hear the sounds of a stumbling tuba, a la Droopy Dog.  When Chris proposed on the balcony in St. John, I heard the swells of some wildly romantic Italian aria.  Even as I sit at work and watch the emails file in first thing in the morning, "Flight of the Bumblebee" runs frantically through my head.

I LOVE live music and have seen plenty of awesome bands in person - The Frames, U2, Muse, 311, Jewel, Radiohead, Gomez, Damien Rice, Stereolab, and The Beastie Boys.  There's something so intense about hearing these musicians perform their songs LIVE, in front of my face, streaming right into my ears and dipping directly into my soul.  Gets me fired up, makes me feel alive.

There are definitive genres of music that are called into play when I'm trying to write, as well.  Regardless of whether or not I'm writing something upbeat or emotionally evocative, I always head to the same kinds of tunes:  moody sorts of music that is someone was going to guess my personality type by listening to my iTunes, they'd think I'm itching to off myself.  Radiohead, Damien Rice, The Frames (especially the new stuff from the "Once" soundtrack and tracks from "The Swell Season"), Nick Drake, Tori Amos ... and soundtracks.  Like "Schindler's List" and "Braveheart" and "Last of the Mohicans." 

I know - pretty damn moody for someone who spend the majority of her day laughing.  Looking at my iTunes library makes me look all emo and crap.  ;)

I spend the majority of my day plugged in to headphones or listening through the speakers, doing my job, and enjoying tunes.  Over the last few months, I've been listening to the same music, but I rec'd a mix cd from Carey a few bit ago that introduced a whole new cache of bands into my playlist.  Now I'm itching for some new songs and new bands - it's like I need a musical spring cleaning, shuffling out the old stuff I don't really listen to anymore (sorry, Snow Patrol) and bringing in the new blood. 

So, O Wise Internet - what are you listening to these days?  Anything worth sharing?  Can I usher in the Spring with your playlist?   

March 07, 2008

Early Weekend.

This morning I had the pleasure of sitting down for a great breakfast with Mollie Singer and her mom, Jackie.  (Yes, her sister is Jackie as well.)  Mollie blogs over at CureMoll and has been type 1 since she was four years old.

We sat down for coffee and eggs at Pershing Square (right near Grand Central) and gabbed about college, relationships, and our experiences growing up with diabetes.  There's something very unique about sitting down with another blogging diabetic and have that instant connection.  Mollie's mom reminded me so much of my own mother, talking candidly about how an upbeat attitude can make all the difference.  And Mollie, with her bright smile, was just as sweet and positive as I had anticipated.

To that end, we laughed, joked, and had a good time.  Maybe too good a time, because when Mollie's mother excused herself to the ladies' room, this guy came over to our table.

"Excuse me, but my friends and I have a bet that you aren't from around here."

Did I hear him right?  "What's that?"

"That you aren't from New York.  Are you?"

Mollie shook her head.  "I'm from Vegas."

"Me?  I'm from Rhode Island."

The guy laughed.  "So definitely not from New York.  I knew it!  You seemed to fresh-faced and happy to be from the city."

I couldn't help but laugh right back.  "You're telling me that we seem too happy to be from New York?  That we're too smiley?  Well sir, I take that as a high compliment then."

Kerri and Mollie - not locals!  :)

Cheers to you, Mollie, for being another happy face visiting NYC!! 

I'm off to get an early start on the weekend - have a good one!

February 25, 2008

The Blogs That Bond.

Six Until Me has existed for almost three years now and over the last three years, I've had the opportunity to meet some of the best people.  And on Saturday afternoon, I had the chance to hang with some of my favorite bloggers and take in a play at Trinity Repertory Company in Providence, RI.  Shannon, Julia, Nicole, and I watched a terrific play, took in some tasty sweet potato fries (okay, I had the fries), and chatted about all kinds of stuff.

The play we saw was Some Things Are Private,  which was a docudrama about "a provocative look at who determines 'what is art?'"  It centered on the work of Sally Mann, a photographer whose collection Immediate Family drew criticism from many circles, claiming the nude images of her children were not innocent or "slice of life" but instead pornographic. 

"What is private?" was a line that was offered up several times throughout the play, pointed at Sally and her decision to go public with her family's private lives.  What is private?  It made me think about the four of us and our decisions to blog, women sitting together who have decided to make their private lives public.  Whether we are writing about our children, our lovers, our disease, or what makes us laugh, we as bloggers are putting our private lives on display for the public to consume.  Some times, this is a terrifying feeling, knowing that your life is chumming the waters for people you will never know.  And sometimes, it is the most therapeutic feeling in the world, letting your thoughts float out freely and being bold enough to do it day after day, inviting strangers into a life they wouldn't otherwise even glimpse.

What is private?  Is it my moment with low blood sugar in the wee hours of the morning?  Is it an argument with my loved ones?  Is it being ushered into the flowing folds of my wedding gown as my maid of honor honor watches?  Is it dinner out with my old college roommates and laughing at our chaotic pasts?  Is it that moment of fear, that moment of laughter, that moment of insecurity, that moment of complete and unabashed bravery?

Blogging is a very unique undertaking, sharing our lives with strangers.  In rare turns, these strangers become our friends and part of our lives outside of the blog, letting us sit together for an afternoon of remarkable theater and easy conversations. 

Our photographer was the host at the pub. Sorry he was off-centered!
 

February 21, 2008

Where Do I Hide My Insulin Pump?

I had dinner this week with a woman who has been type 1 diabetic for over two decades, like me.  She lives in my proverbial neck of the woods, so we met up in Fairfield and hung out for a while.  (Read:  Almost three hours.)  How is it possible to find something to talk about with a complete stranger for three hours?  Oh yeah - the diabetes connection!

One of the things we talked about was pumping, and how we handle wearing our pumps.  R has been pumping for three years, me for four, so we're relatively new to pumping insulin but veterans to diabetes.  R has a 15 month old son whose cute little feet occasionally kick against her pump when it's clipped to her hip, and she also expressed the same "where the heck do you put it?" question when it came to dressing for work.

"Mine?  Right now?  It's in my sock."

"No kidding?  Right in your sock?"

Being the shy and timid human being that I am, I hitched up my pants leg and showed her.

"Here.  It's attached at my thigh, the tubing goes down the side of my leg, and my pump rests against my shin bone.  The only thing that's a bit of a hassle is reaching down to bolus, but I was over that within a few days of wearing it here."

"Wow.  I may have to try that!"

I'm very fastidious about integrating my pump into my wardrobe.  I've written about this several times before and am sometimes met with the "You shouldn't be ashamed of your diabetes - you should wear your pumpinBLOGnito with pride!" response.  Please know:  I wear my pump with plenty of damn pride.  I'm proud to be taking these steps towards controlling my diabetes and I'm proud of the access I have to such progressive medical technology.  But be warned:  I'm also proud of being sort of incognito about it.  "You have diabetes?" they ask, not sure.  And I like that uncertainty.  I like being healthy to the point where people are surprised when I reveal my diabetes.  And also like seeing my reflection and noting no evidence of diabetes unless I know where to look.

Pumping - yes, very proud.  And subtle about it - also very proud.  This topic comes up so often when I'm talking with other young professionals that I'm always happy to share my techniques, and to learn any tricks from them. 

So when I heard this voicemail message on my phone this morning, I laughed out loud. 

"Kerri, hey it's R from dinner the other night.  I'm calling because I wanted to tell you that I've been doing the sock thing and I'm so, so excited.  You've revolutionized where I put my pump.  So far, it's wonderful!"

I was barely able to contain my grin.  Here's to the power of sharing ideas! 

February 20, 2008

Strip.

I am a relatively clean person.  I don't like dirty dishes, hampers filled with needs-to-be-washed laundry, and I despise knowing the cat box has those teeny morsels of yuck in it.  Sometimes, late at night when I should be getting ready for bed or relaxing on the couch, I'm hit with these cleaning fits.  I'll scrub away at every last stain on the counter, reorganize my underwear drawer (yes, it's organized for the most part), or start chucking the expired items from the fridge. 

I clean up my desk whenever I leave the office.  I can't stand messy piles of paper or a filthy, unwashed coffee cup with that tell-tale ring of grinds the bottom.  I don't like when the garbage can isn't emptied every night.  

Clean.  I like it that way.

So why, oh why, do I find myself completely and utterly inept when it comes to properly disposing of used test strips?  

These little buggers are everywhere.  I've written about them before (stuck to Chris's face, on the floor at the gym, and even discussed in dictionary entries), yet I still haven't found a way to solve the problem.  I test anywhere from 8 - 15 times a day, so these used strips accumulate and are inadvertently stashed in parts of my life like those hidden picture things from Highlights for Children

Glucose meter strip on the floor.

On the floor just next to my garbage can. 

(And that's a sticker from an apple.  I couldn't get it to peel back up.) 

Bag o' stuff.

At the bottom of my massive work bag (with many other assorted bits).

Even in the damn camera bag.

Even in my relatively-new and almost always zipped camera bag.  How the hell did it get in here?

Crafty little testy suckers.  I do my very best to make sure I do not leave a pocket of test strips when I visit new places or people, but I always find a pile of them hanging out in the spots I frequent the most:  my car, my office, and my home.  I keep trying to get them in the garbage can but it's like the bin takes a step to the left every time I go to toss one out.  Are garbage cans across the country uniting to thwart my best intentions?

I need to sharpen my disposal skills.

January 28, 2008

Making Decisions.

Your feedback has been tremendously helpful on this CGM front.  Thank you SO MUCH for your help.  I've had a lot of moments lately when I'm not sure what to do next, because things are spinning so quickly.  Must write that article, must finish that edit, must call that vendor, must try the newest and latest diabetes technologies, must, must, must.  Oooh, and don't forget to sleep.

There's an art to time management, one that I haven't even begun to figure out yet.   I envied people who are able to take on several tasks and get them all done without compromising their sanity.  In my own busy brain, I figured that I just wasn't trying hard enough.  I needed to try harder, and then the work tasks would be done, the body would be well-managed, and diabetes wouldn't be sending up distress flares.

But I am trying hard.  I need to learn to be more forgiving of my own short-comings.  I need to live at peace with this disease.  While it wants attention at every moment of every day, and has demanding that attention for the last twenty-one years of my life, I can't always give it what it wants.  I have a LIFE going on here, one that isn't even close to dictated by diabetes.  

"Wait, wait.  What about your job?  Your job is about diabetes!"

But it isn't.  While I'm writing and editing articles about diabetes, my job isn't about focusing on my own diabetes.   It's about raising awareness of diabetes as a whole, providing information to the public about the disease, and enjoying the inspirational vision of this company.  Diabetes-related or not, this job comes with awesome co-workers, stressful deadlines, and a full range of chaotic fun. I enjoy my job.

"Okay, then the blog.  Your diabetes blog?  Doesn't that become suffocating?"

Yes and no, to be honest.  I like blogging, and doing it for almost three years now has been awesome.  But this blog isn't about diabetes so much as my life with diabetes.  LIFE.  I know I'm in a tough place, diabetes-wise, when I see that my blog posts are focused solely on diabetes-related matters and I'm all questions and stress.  I know I'm light-hearted and silly when the stupid cat makes an appearance.  This blog, though it deals with diabetes issues, is free therapy.  It makes me feel better to write it.  And I like going back to read how I've healed.

"... so your life isn't about diabetes?"

No, it isn't.  It's about ... me.  Diabetes is just a bit player on a big stage.  And for the next few weeks, I have a wedding I want to focus on.  My mom called me about my wedding shower today and I'm completely excited and nervous and thrillled.   I have my awesome friends who are just a state away and I can't wait to see them this weekend.  I have work to do here at dLife, working on content for the new shows and having some silly moments with co-workers.  I'll always have this disease to manage, but sometimes it's easier to manage from a distance, rather than with my nose pressed against the glass. 

I'm going to take a few more days off from the CGM.  I'll call Mr. Minimed in the next day or two and tell him my plan.  And I'll wait until I'm feeling less rumpled and more at ease with other aspects of my life before throwing in the frustration of a new, albeit potentially beneficial, device. Giant, Happy Chili Pepper.  Duh.

I'm making the decision to relax, have some laughs, and loosen up a bit.  It'll all get done ... no need for the furrowed brow.  I'm not myself when I'm being so damn serious.  It's against my nature.

(Notices the huge chili pepper posterboard cut-out taped to my office wall.) 

Totally against my nature.   

January 10, 2008

SUM Questions Answered.

I've received a few questions about the Minimed CGM in the comments and I wanted to address them here, because when I started to answer in the comments section, I was waaaaaaay too wordy.  Here's the MiniLink FAQ, answered with my limited three day knowledge base.

Did your insurance cover your CGM?I love Legend of Zelda.

I had the good luck of finding a Minimed Representative who would let me trial the CGM for a few weeks in order to make a decision about making the MiniLink a permanent part of my diabetes management plan.  So this CGM is cost-free at the moment, or at least until I give it back and buy my own.  ;)

However, I have spoken to my insurance company, my various medical representatives, and other diabetics about getting insurance to cover a CGM.  The feedback varies, but the common theme seemed to be "need-based coverage."  At this point in my life, I have an A1C under 7% (believe me, this was a battle), I have not visited the emergency room as a result of diabetes issues, and I have not called the paramedics due to hypoglycemic unawareness.  From what I'm told, insurance companies look at me and think that I did fine without a CGM before, so there's no need for me to have one now.

Per usual, I don't agree with the sentiments of the insurance companies.  With my wedding in less than 5 months and motherhood on my radar, I want my diabetes to be as tightly controlled as possible.  Wearing a CGM to ward off excessive highs and to protect me from debilitating lows sounds to me like a terrific way to prepare my body for babies.  That's not reason enough to be approved for coverage?  I don't like being told that the only way I'll get a CGM approved is if I'm visting the emergency room.  Shouldn't the point of having access to this technology be aimed at preventing those moments, not reacting to them?

More on insurance coverage in the coming weeks, as I decide what role a CGM will play going forward.  But believe me, I will not go quietly into that insurance mess. 

What I want to know is how you got the sensor in your arm.

Ah, tricky one, this.  Thanks to my friendly neighborhood Minimed rep and my inability to be completely shy, my rep helped me place that sensor on my arm.  Otherwise, I'm not sure how I would have held the sensor in place while withdrawing the needle.  Even now, as I change the bandaids that hold the transmitter in place, I need to enlist Chris's help.  I don't think I could have placed it effectively without help. 

Does it feel weird to have it in your arm, though?

Not really.  Since I don't like employing my abdomen as a holding place for diabetes devices, I was happy to use my arm for this first sensor.  I have to be careful when I take my clothes on and off (like last night, when I almost ripped the transmitter from my arm with my bra strap), but I encountered that with my thigh sites when I first started using those for pump sites.  My brain just needs to adjust.

I did have a little trouble at the gym two nights ago, during my run.  Thanks to the bandaid becoming a bit unsticky and the fact that I was wearing a sleeveless shirt, the transmitter became a little loose and started shaking about.  I had to cut my cardio short to keep the sensor from flying out, but my next plan is to wrap a light ACE bandage around my bicep to hold the MiniLink in place.

I wanted the CGM to be unobtrusive and discreet for this debut.  The arm placement helped me achieve that comfort level.  Now I feel less daunted by the technology and more apt to try different placement sites. 

I'm happy to share my experiences with this device, and to answer questions as honestly as I can.  Thanks for your questions, and let me know if there is anything you're curious about, or what your experiences have been like.  I'm so new to this device that I appreciate all the feedback on it, good or bad, that I can find.

SUM Tags: , , , , ,

December 28, 2007

Question for the Blogosphere.

From the mailbag.Hey FR's. 

I received an email from Rachon about life insurance for someone with diabetes.  I asked if I could repost her question and she said sure.  Here it is:

Hi Kerri.

Could you recommend any life insurance companies that will provide life insurance for a diabetic person?  My father needs life insurance and he is always getting turned down.
 
Thanks

I haven't had to scope out any life insurance policies for myself yet, but maybe some of you out there have.  If you have any words of advice for Rachon, could you please leave a comment below?

Thank you, as always, for your limitless amounts of perspective and information.  Damn, the internet is terrific.

November 03, 2007

Oh the Captions!

So here's the part where it gets tricky for NaBloPoMo - on weekends.  I spend my weekends spending time with friends and family, not necessarily blogging or ... internetting.  Ah, November.  You are the new monkey wrench in my plans.

No problem. 

I've got cartoons to keep me entertained.

Hat tip to Emily Hastings!

I received this in my email from reader Emily Hastings and it had me laughing out loud.  (Yes, aLOL.  For real.)  Darn internet cat memes.  Darn giggling fits. 

Off for some fancy Italian cuisine here in town -- must go get gussied up.  Don't forget - it's time to change your lancets tonight (and your clocks, if you are so inclined).  Daylight savings time ends today and now we're plunged into the darkness of winter. 

Good thing I have this handsome guy to keep me warm.  Oh, and like fifty thousand annoying cats.

October 22, 2007

Walk in My Shoes.

I walked with the October sunshine warm against my back.

Kerri, Nicole, and Shannon.

I walked with Shannon, whose son knows what I know.  She shared moments with my mother that made me feel like my mother was less alone now, too.  I walked with Nicole, who shared orange slices with me as we treated simultaneous lows.  (I also wore the hat of a viking warrior princess, but that's an entirely different post.)  These were my fellow bloggers, my friends with diabetes, folding me into arms that know what it's like to have fallen down the well of a low.

I walked past toddlers in their strollers who offered their chubby fingertips to their parents for a quick blood sugar check.  I saw children holding hands with their parents, passing glucose tabs between their fingers.  I saw a group of teenagers and scanned their hips and their hands for evidence of their diagnosis, but I couldn't tell which one had it.  I walked past children with bright blue pumps clipped to their bodies, smiles even brighter.

I walked with my aunts and my cousins, who have always made sure there is diet soda at the family picnics and a sugar-free dessert after a holiday meal.  I walked with one of my best friends, who has learned about diabetes in the same breath that she's learned about my favorite bands.  I walked with the support of my other best friend, who is as quick to make me laugh as she is to count the carbs.  I walked with my fiance's sister, who by just showing up makes me feel like she understands.  I walked with my future niece, who knows I wear my medicine on my hip, but that I will also play teddy bears with her. 

I walked with my fiance, who loves me not because of or despite this disease, but simply because he loves me.

I walked with my mother, who was there the day I was diagnosed and who has lived with this disease as long as I have, only she feels the sting of a high without needing insulin, the tears of a low without needing juice. 

I walked proudly, surrounded by friends and family both new and old, taking steps towards acceptance, towards progress, towards a cure.

Team SUM, 2007.

Team Six Until Me.  2007 edition.

(Missing from photo:  My aunts, cousins, Jeff, and Superman.)

July 19, 2007

A Handful of Items

Item One:  Arching in as topic one (oh ha, the puns!), I will be at the Annual AADE meeting in St. Louis this year.  (My poor editor-in-chief is my travel companion.  I hope she doesn't mind when I'm half on the moon from xanax for my fear of flying and rambling on nonsense about my cat until the medication wears off.)  Will any of you be there?  I'm very excited to participate in this event as a member of the dLife team.  And I'm very excited to see the big ol' Arch. 

Item Two:  Back when we went rafting, the raft guides has some rogue kayakers who skipped ahead, perched themselves on the rocky sidewalls, and snapped photographs of the rafters as we passed by.  Here is how we rolled:

Rolling down the river.

Item Three:  Wedding planning, though having taken a bit of a backseat to different work projects for both Chris and I, is in full swing.  We've booked our reception hall and nailed down our actual wedding date, so now it's time for all the other stuff - like the photographer, the church, dresses, and deciding how many flowers is really "too many."  Admittedly, I have no idea what I'm doing.  I have several books and have consulted with The Knot on several occasions (only to notice that my post about Oliver's gas was linked from their discussion boards - I laughed until I cried), but time is going by so quickly and I fear I'm falling behind. 

Our engagement party invitations came in, so that's all set to take place on August 18th (yay!), but aside from that, I'm sort of lost.  How exactly do you find a photographer?  (If anyone has any recommendations for a photographer in the RI area, I'd love to hear from you.)  How far in advance do you need to find a wedding dress?  How hard is it to wrangle all the bridesmaids into one style of dress or can I have varying styles along the same color theme?  How much wood would a woodchuck chuck, were he so inclined? 

Item Four:  Social networking is all over the place these days.  LinkedInTwitterFacebookNing networksMySpace.  Whoa.  (No, "whoa" isn't a social networking platform.  At least not yet.)  There are plenty of networking opportunities.  I'm sure there are plenty that I have no clue about.  Any new ones that you know about?

Item Five:  I don't know if you caught this link on my sidebar, but I want one of these in the worst way.  And I can't figure out why it appears to have a hand brake.  Bizarre indeed!

July 17, 2007

An Interview with My Friend, Demarco.

The Interviews at SUM

My friend Demarco from Australia has returned for another visit at Six Until Me, and this time he brought his new hypo-dog friend Chino!  Fresh from Australia's Paws for Diabetics, Chino and Demarco are taking care of each other and having some fun.  Demarco and his mom, Kate, spent some time with me and gave me a glimpse into their diabetes lives. 

Kerri:    Can you tell me about when you were diagnosed with diabetes?

Demarco:  I was only 23 months when I was diagnosed with Type 1 Diabetes. I don't remember much about it, but some of the bad things I will never forget. I had these terrible pains in my legs and tummy, and because I couldn't tell Mum, she couldn't help me. I just screamed at her, the only times I stopped screaming was for water. I also remember getting my nappy changed a lot. I remember Mum taking me to a new doctor, and he did a prick on my toe. A little after that, my Mum screamed, and cried and she couldn't even walk to the car. The doctor had to take her to the car and my Dad had to drive. She was shaking a lot too. The strange thing was that I stopped crying and screaming for the first time in days because I finally knew that SHE knew that there was something seriously wrong with me, and she was going to get me help. She hugged me tight, and I clutched on to her long red hair, because it made me feel safe. I remember 4 men with stethoscopes trying to hold me down to put a huge needle in my arm, and looking at my Mum and wondering why she wasn't stopping them. Whenever I hear the song 'Tomorrow', from the musical, Annie, I think of hospital too. My Mum used to sing it to me when I had to have an injection or a fingerprick, but instead of singing, 'The sun will come out, tomorrow,' she changed the word to ' Demarco.'  I remember there was lot  of Winnie the Pooh and Tigger stuff given to me. I have a strange feeling when I see Winnie the Pooh now.

Kerri:    I know you’ve had some very cool experiences as a diabetes advocate – can you tell me Demarco and his hypo-dog pal, Chino.about your favorite one?

Demarco:  Since I have been fundraising, I have now made in total $5500 for JDRF Australia. The best thing that has ever happened from being an advocate is that a lady from Sydney rang my Mum and asked if  I would like to go an event called 'Kids in the House', where 100 other kids with Type 1 got together to tell politicians just how much we all need a cure. It was a pretty serious event, but the best thing was that I got to play basketball with the Australian Sydney Olympians at the Australian Institute of Sport.  I met one player, also with Type 1 Diabetes. He told me that I was the bravest kid he ever met.(I felt my ears go red.)  He said when he was diagnosed at 7, he was horrible to his parents, he used to steal lollies out of the cupboard and lie about his readings. He even said he hated himself. It wasn't 'til he became good at basketball that he realised that Diabetes could stop him at nothing. He changed his life completely. He shook my hand, and introduced me to the team. They lifted me up high in the air, and one guy tried to slam dunk me! The other cool thing was John Howard walked past our table, and I said to Mum' Wow! He looks like George Costanza from Seinfeld!!) I thought world leaders would be big and powerful. Mr. Howard looks like a grandad with caterpillar eyebrows!!! He DOES know a lot about Type 1 Diabetes though, and he is very passionate about finding us a cure. So I guess he is a pretty decent guy then. He’s just very small!

Kerri:  You and your mom are a good team and you work together to manage your diabetes.  Do you have other friends with diabetes?

Demarco:  I have met lots of people with Type 1 Diabetes. When older people find out that I am a diabetic, they sometimes say that I will grow out of it, or I should cut back on sugar. This hurts my feelings,but I am getting better with it now. I have my best American friend, Brendon, who is my penfriend, and I have met lots of kids who are a bit older than me who are great to talk to. There is nothing like talking to someone who has diabetes, because they walk in your shoes. My mum is a mentor to a girl named Jelly, and she is probably my best girl friend. She goes to high school, but we are on the same insulin, and we both feel the same way about having diabetes. I really like her a lot. She is really, really pretty too.

Kerri:    Being diabetic means there will be some low blood sugars sometimes.  I heard that you recently added a new friend to your diabetes team – Chino!  Can you tell me about your new friend?

Demarco:  Chino is a 4 month old pure bred whippet. He is the best thing that has ever happened Demarco and Chino have a cuddle.to me. He goes everywhere with me. The law says that he can go everywhere except an operating theatre of a restaurant kitchen. We have cool ID Cards with our pictures on them. He has picked up so many hypos before they turn dangerous. He has a few different ways of alerting. He will either nudge my chin and whine like he is crying, he will  howl like a dingo, he will jump up on Mum and start biting her jewelry or her collar, or he will bite my fingers, and won't stop when I say 'no.' If he does any of these things, we test, and each time, I have had a problem with my blood sugar that I wouldn’t have known about until much later when I started feeling sick. I have had less hypos. It's such a good feeling not to feel that way all the time. I am a happier boy now! Chino came to me because my Mum got in contact with a lady from a company called 'Paws for Diabetics.' She has matched up dogs with people all over Australia and their lives have improved, as well as having a new friend! When he gets older, he will be even better at his job. His sense of smell is 500 times better than ours, so he is able to detect when my sugar levels are changing through sweat. He has all the same rights as a guide dog. As he is so friendly, he has to do a lot of training so that when we are out, he is totally focused only on me. I can't imagine life without him now. I used to only like cats, and there were three breeds that can detect hypo attacks. A Chinese Crested (it has no fur except a tuft on his head-a little creepy) A Shetland Sheepdog, (too big and lots of fur to look after) and that left a whippet. I kept thinking that he would look like the dog off the Simpsons, Santa's Little Helper! He doesn't though. He is beautiful, and he cares for me so much.

Kerri:    Aside from doing things to raise awareness about diabetes, what other things do you like to do? 

Demarco:  I really am into Yugi-Oh Collector Cards, I guess because I can speak a bit of Japanese, and I like Anime cartoons. I am also doing pretty well at karate now that I have swapped insulin. (I am on Novorapid and Levemir). I love hanging out with my Mum, she is a good teacher, and she sure knows how to look after people with Diabetes! I just love talking to people, Kerri. They don't have to be six, they can be 30, or 80 or 13, just as long as they have a good heart and treat themselves and me with respect. I want to be a good swimmer too, so when it gets warm again, I will start swimming again. (When I was on Protophane, I couldn't do many sports. I was always hypo even after loads of carbs and less insulin.)

Kerri:    Demarco, if you could ride around in a hot-air balloon, what would you want to fly over? 
 
Demarco:  If I got to go in a Hot Air Balloon, I would probably wanna check out Heaven, just to say hello to my Uncle Paul, and my Grandmother. I would ask my uncle if he could use some heaven magic to keep my eyes and kidneys well. I would want to say hi to Jesus and the angels too. Oh, and the Artic Circle, so that I could spy on Santa, to see what he's got in store for me this Xmas. (I have been pretty good for the first half of the year!)

Kerri:  Thanks, Demarco!  Enjoy your new friend!

Visitors since November 7, 2005