I spend a lot of time writing about diabetes within the diabetes online community, but I don't have a lot of opportunities to bring diabetes advocacy outside of certain parameters.  I've done some guest blogging for non-diabetes sites, but for the most part, I speak about and to the diabetes community.  Sometimes my advocacy efforts exist within a bubble. 

But last week, I had a chance to step entirely outside of my comfort ... bubble? and speak with woman bloggers who aren't living with or caring for diabetes.  It's very humbling to sit in a room with women who have lost a child.  Or who have traveled to Africa to work towards eliminating pediatric AIDS.  Or who have made a difference for women who are dealing with depression or anxiety.  Women who can make you laugh while they describe the darkest moments of their days.  Women who can find something beautiful with just a click of their shutter.

On Thursday, I traveled to New Jersey to meet with members of the Johnson & Johnson team, the Edelman PR team, and some very powerful bloggers in the parenting space.  I was honored and humbled to be in the company of Alice Bradley, Karen Walrond, Heather Armstrong, Ana Roca Castro, Catherine Connors, Katie Allison Granju, Jennifer Hutcheson, Nirasha Jaganath, Isabel Kallman, Jyl Johnson Pattee, Ellen Seidman, Heather Spohr, and Allison Worthington.  An intimate but inspiring group gathered (and dubbed 'a salon') to talk about using social media to contribute to social good. 

When it came time to introduce myself to the group, I was shaking with nerves, not sure how I ended up in this room full of change-affecting women.  (They DO know I blog about my cats, right?  I mean, really.)  I stammered through an introduction, unsure of what to say or how to measure up to these fellow bloggers, but hoping that they'd reweave my words into something that properly represented the passion and power of the patient blogging community.  After introductions, we talked.  All day.  Stories were shared; people laughed because it felt right and because it filled a moment where tears would have otherwise flowed.  (But tears flowed at times anyway.)  We discussed topics including preterm childbirth, pediatric AIDS, using social media to help educate new moms, and how we, as social media influencers and strategists, can impact positive change in these areas. 

And these discussions really embedded themselves in my brain, because it became clearer and clearer that blogging is more than just a web page filled with musings.  A blog, and a blogging community, is a vehicle for change.  Diabetes bloggers are helping to raise awareness and funds for a disease that much of society ignores or misunderstands.  I think that diabetes bloggers make a big emotional difference for ourselves and our fellow PWDs, but I do think we can do more.  And after sitting with these really inspiring women, I'm both inspired and convinced that we CAN do more.

What, exactly?  I'm not sure, but there are a few ideas percolating in my brain.  I am tired of diabetes being a condition that is ignored by society as a whole.  Just because we don't look sick until we're dealing with serious complications doesn't mean we don't deserve a cure.  And just because many of us have grown up past the "children with diabetes" phase doesn't mean that our adulthood with diabetes should be written off as "easy" or unsupported.  The support I've received from the online community has been changed how I manage my diabetes and the emotions related to chronic illness, and I want everyone who is living with diabetes to have access to this kind of care. 

I left the meeting in New Jersey renewed as an advocate and amped up as a member of the patient blogging community.  And I can't wait to develop and implement new ideas with our diabetes online community.  More to come, but for now, I'm just INSPIRED.

[Disclosure:  Johnson & Johnson paid me a consulting fee to attend their New Jersey-based Salon and advise on using social media for social good. I was not paid to write this post. I'm also sure there are typos in this post.  Opinions expressed, as usual, are my very own.]

Posted by Kerri Sparling at 10:08 AM | Permalink | Comments (16)

I met Julie back in Philly a few years ago, and she's vivacious, hysterically funny, and has a great sense of fashion.  (Every time I've seen her, I've coveted whatever dress she's wearing.  Can't lie.)  And I'm really happy that she's offered to guest post today.  Take it away, Julie!

I am a product of the Leach-effect…  No, not the leech effect that thwarted Gordie and his pals in Stand By Me (but wasn’t that an awesome movie), but the kind Robin Leach use to encourage at the close of Lifestyles of the Rich and Famous with his signature phrase encouraging viewers to have “Champaign wishes and caviar dreams.”

Growing up I would wish for a Barbie Dream House or for those purple jelly shoes that my mom didn’t want her daughter wearing. As I got older my wishes evolved into more substantial things like passing my driver’s test and making the school play.  But after my diagnosis with Type 1 diabetes, the Leach-effect really took over….

I guess it’s fair to say that I’m a practical dreamer; positive in my approach to life; strong in my faith and regular in my prayers.  This – however – has not stopped me from making wishes on the first star I see at night and on every eyelash (and probably a few eye brows) that leap off my face.  And yes, I did set my alarm clock for January 11, 11:09 – so I could be awake to make a wish at exactly 1.11.11.11:11.  And I plan on doing the same thing in November.

But when I woke up to make that wish on Jan. 11, it took almost the whole minute. My wishes have become incredible complex and almost always focus on, or are effected by my diabetes. There is always a disclaimer or specific details I feel the need to incorporate into my complex Leach-style wishes…

Today, as I wished on an eyelash, I started thinking about everything that would have to be addressed to make my wish come true.  This also led me to wonder if I was starting to tick off the granter of the wishes, or if, perhaps, that is why some of these wishes take so long coming true. (BTW, who does grant wishes?  Is it God, the tooth fairy, or perhaps there is a diabetes genie out there somewhere.)

As an example: “I wish everything that needed to happen to assist in a full point drop in my A1c would happen soon, so I can get this under control and get on with my life.” Not a simple wish; not a simple reality.  Here is what it took for that wish to come true: my husband’s company relocating, him finding a new job, selling our house, moving to a new city, getting new insurance and a new healthcare team, finding another new endo (‘cause the first one was a putz), getting a new pump and CMG, more than a thousand hours of training, finger sticking and carefully monitoring my food, exercise, stress, activity, medicine, and a whole bunch of other stuff you’re even less interested in.

I’m not making wishes, I’m trying orchestrating the world with my wishes!  No wonder the wish genie’s annoyed! 

Of course, my A1c did come down a full point eventually and then some…  And you know how that goes…  I’m on to new wishes and happier dreams. And now, when I’m closing my eyes, and exhaling with all my might, wishing for …  well I can’t share that or it won’t come true…  but it’s a good one and 65 words long! (Yes, I typed it out, did a word count and deleted it.  So what?  It’s my wish… ) I won’t stop wishing for it nor will I leave a detail out.  I believe this wish can come true; so many in the DOC have proved that to me…  And I know it’s going to take a lot more orchestrating and world moving to find a sustainable cure – but I know that’s a wish we’re all making and expecting to come true, as well.
Thanks for posting today, Julie!  And how about you guys - what are your diabetes wishes??  (Aka, how do you annoy "the wish genie?"  ;) )

Posted by Kerri Sparling at 08:02 AM | Permalink | Comments (13)

I'm doing some traveling this week, and I'm really grateful to have some wonderful guest posts on tap for while I'm away.  Today, Tamara from T1 Family offers up her story.  Tamara is the wife of a person with type 1 diabetes, and also the mom of a CWD.  (And she's a family physician, to boot.)  I'm really proud to be introducing her to the Diabetes Online Community - please give her a warm welcome!

Sometimes I sneak to the garage and eat Skittles -- they are for my daughter's lows and the only candy in the house.  Other times I have wondered "why me?"  But, most of the time I am so incredibly thankful.

Before the year 1922, insulin did not exist.  Back then, I would not have had the chance to meet and fall in love with my wonderful husband, a Type 1 diabetic.  I would have been forced to watch my beautiful, sweet 7-year old daughter slowly die before my eyes, as a result of her own Type 1 diabetes.

I remind myself of this multiple times a week as I spend hours meal planning, grocery shopping, preparing food, checking blood sugars, changing sites, empathizing with my T1 daughter that having diabetes stinks, trying to spend adequate time with my non-T1 daughter, communicating multiple times a day with the school nurse ... all while working as a Family Physician which is in fact my paying job.

I have discovered being the caregiver is a fine balance between nagging, enabling, and empowering.  I'm not sure I've got it quite right yet.  And, having an almost 40-year old and an 8-year old to care for are two very different things.

The 40-year old has been diagnosed since right before he turned 18.  He is an inspiration.  He finished med school, became a family doc as well and is an amazing husband and dad.  But, he's not always an amazing diabetic.  And, who could blame him, really?  I truly cannot imagine what it feels like to have a pancreas that doesn't work. As hard as my job is, I get breaks.  I can sneak the Skittles in the garage without having to worry about all the short and long term effects if I don't dose the insulin just right.  He can't, and maybe denial is the coping mechanism that is only natural.  And, so he has me reminding him "that always makes you high... did you check your blood sugar?  Are you high? Are you low?"  It must be exhausting to him.. it is to me.  But, diabetes doesn't take a break.  It is there 24/7.  And, I love him and want to grow old with him and so I nag.

I try to empower and support, and at times I clearly enable.  And, I get frustrated at times.  I make him a lunch... the carbs are clearly labeled on the bag... and then I find him snacking after lunch with handfuls of chips.  What was the point, I wonder?  He's going to be high anyhow now.  Why did I bother to measure the lunch?  I might as well have just sent him with a big scoop of pasta and label it "take your best guess!"  At times I feel angry.  At times I feel scared.  But, I continue day by day trying to be as supportive and helpful as I can, all the while trying not to drive him nuts with my nagging.

But, then on October 7, 2009 my sweet 7-year old baby girl was diagnosed.  She has a fraternal twin, my only other child who thankfully does not have it (yet?).  What a different playing field.  Initially she needed me to do everything, all while my heart was broken and my world shattered.  I held her down screaming while I gave those first shots.  I had to -- I would not let diabetes win.  I told her "no" more times than I could ever count that first year.  No, you can't have chocolate milk.  No, you can't have a brownie.  Oh, and by the way, diabetes can't stop you.. you can still do anything.  But, you can't have that chocolate cake that the other kids are eating.  In case you haven't guessed my T1 daughter is a HUGE chocoholic.

As instructed I kept her on the rigid prescribed carbs with every meal.  I became the food police in ways I had never, ever been with my husband.  I had to re-learn to shop, re-learn what to feed my daughter, forget what it felt like to get 7-8 hours of solid sleep.  Instead of enjoying her school plays, I sat paralyzed in the audience.  What if she gets low?  I couldn't help but have times I looked at my friends -- why me?  But, then I would realize it truly is why not me?

We all have our life story.  Perhaps this was always meant to be mine.  I am a caretaker at heart.  I chose a healing profession as I love to help people and encourage them to take care of themselves.  I wasn't dissuaded in the least when I found out my now husband had Type 1.  We'll deal with it, was my attitude.  I always worried that my children might get Type 1.  The odds are so small, but I worried.  I remember beginning to read Cheating Destiny and being unable to continue when he described his son's diagnosis.  But, one random day in October my daughter was thirstier than she had ever been, and a new phase in our journey began.

And, now there are two of us with working pancreases and two without.  Some days I look at my non-T1 daughter and wonder: is it starting?  Has the process already begun?  Will I soon be the only member of my family without T1?

But, none of us know our destinies.  I do know I will rise to the occasion.  I will handle it.  I will take care of my family, working pancreases or not.  I'm a mom.  That's what we do.

Tamara, I am only beginning to understand what being a mom means.  Thank you for such a moving post, and for taking such good care of our fellow PWDs.

Posted by Kerri Sparling at 08:34 AM | Permalink | Comments (21)

I did not make this video, but fellow PWD and pumper Hannah Lambert did. I think this video is a really cool way to show how an insulin pump site change takes place ... if you were the Sorcerer's Apprentice and you could accomplish most of this task without using your hands.  Clever stop-motion animation here.  Check it out:

And now I'm dying to figure out how to create a stop motion animation video of my own.  You know, in my free time.  While the kid naps.  ;)

Posted by Kerri Sparling at 08:23 AM | Permalink | Comments (9)

As an Animas Ping pumper myself, I wanted to share the letters that Animas Corporation is sending out to their pumpers who may have been impacted by the proactive insulin pump cartridge recall.  The affected lot numbers  are contained in these letters, so you can check and see if your supplies are on the recall list:

Letter to patients
Letter to health care professionals

These letters were provided by the Director of Global Communications, Caroline Pavis, and these proactive moves by Animas make me proud to be working with their company.  Just wanted to pass the info on!

(More info on TuDiabetes, Diabetes Mine, and Trials and Tribulations of a Type 1 Diabetic.)

Posted by Kerri Sparling at 10:44 PM | Permalink | Comments (16)

People 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!!

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.  :)

Posted by Kerri Sparling at 10:09 AM | Permalink | Comments (24)

The most awesome thing I have done in spite of diabetes is this:

Diabetes has had more than its share of moments in my life, but not this one.  Becoming a mother is the most awesome thing I have done in spite of diabetes.  When I first held my daughter in my arms and felt her warm cheeks against my lips, when I realized that motherhood wasn't denied to me because of my uncooperative pancreas, when I realized that my life wasn't defined by anything before, but was now defined by my baby ... these moments were mine.

(This post is my February entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/introducing-the-dsma-blog-carnival/)

Posted by Kerri Sparling at 10:14 AM | Permalink | Comments (17)

When Michael Park emailed me about the opera he was writing that centered around diabetes, I couldn't say no.  Because, aside from picturing him wearing a giant hat like this while he emailed, I also loved the idea of a musical version of life with this crappy disease.  Michael, a fellow person with type 1 diabetes, is looking for some input from the DOC for his amazing project, and today he's guest posting about the how, why, and whoa of his diabetes opera ambitions.  

To get involved, check out his call for submissions! 

*   *   *

As Kerri's tagline implies, we are all more than our diabetes, but it's fascinating to think about the role diabetes plays in how we define ourselves. Lately, I define myself first and foremost as a composer. Nevertheless, I spend so much time thinking about diabetes, that I would feel insincere trying to hide it. Like it or not, growing up and living with diabetes shapes who we are. As an artist, I feel compelled to explore that influence through my creative process.

The music I write is about experience – the experience of writing music is never the same from piece to piece, I constantly think about the experience a performer will have with my music, and finally, I want the audience to experience more than just a succession of notes.

I think it's only natural for artists to want to explore their own experiences, so for years I've been looking for a way to musically portray diabetes. Specifically, I don't want to write songs about diabetes, rather, I want to bring the experience of diabetes to life. This is not the first time I'm approaching a medical condition through music; in fact, one of my most successful pieces brought another condition to life through music.

After watching my grandmother go through and ultimately succumb to Alzheimer's Disease, I was inspired to write a set of piano pieces that I called the Alzheimer's Variations. I wouldn't have been satisfied paying lip service to the disease by just slapping on a title or dedication. I needed to write something that brought both my grandmother and the disease to life as a piece of music. I did things like asking the performer to actually make mistakes - involving them as an actor, not just a pianist.

After I finished writing the piece, I doubted myself, “what if this is just self-indulgent drivel?” Thankfully, my fears were silenced. After the performance, the pianist described how powerful the experience was for her; she felt that she understood what it was like to go through the stages of Alzheimer's. I had audience members come up and thank me for perfectly encapsulating what they had gone through with their own loved ones.

If you can spare about 11 minutes and want to listen, please go here.

As it's been mentioned all over the diabetes blogosphere, diabetes is an invisible illness, and the things I want to illuminate about type-1 diabetes can't be shown in a straight forward way. Can you imagine the headlines if I tried to portray it like I did in Alzheimer's Variations...

New Opera 'Hypoglycemia': More Like 'Stage Full of Drunks'
or
Carb-Counting Songs: Man Stares Blankly Before Biting a Dinner Roll

Instead, what I have in mind is an opera with three main characters: Charlie (accompanied by his parents) is a young boy, newly diagnosed with diabetes; Heidi is a professional woman, obsessed with maintaining the tightest control over her condition; and Frederick, early in his retirement, struggles with complications developed over a lifetime with diabetes. The opera follows their stories through interactions with their Endocrinologist, nurse educator, dietician, waitress, and friends.

While I have a starting point and loads of ideas, I need the help of the diabetes blogging community. If you've ever read or written a blog, please go here to see how you can be a part of what promises to be an incredibly exciting project!

Considering this project will be a while in the making (as part of my doctoral studies in music), I'm trying not to let myself get carried away, BUT I've gotten nothing but support and excitement from everyone I've talked to so far! There's a summer opera program that wants to workshop a scene or two this July, and that means I need to get cracking! I hope to get as many story suggestions from the blogging community as possible within the next month – that way I can get some good writing done for the summer, get some musical feedback, and hopefully have a video recording to use for promotions and gathering further support for the opera.

By starting with real-life stories from the blogosphere, I see this opera as an opportunity to try and define the diabetes experience. While many of us avoid defining ourselves as diabetic, I put this forward as an opportunity to define 'diabetic' as ourselves – both as individuals and as a community.

Posted by Kerri Sparling at 08:39 AM | Permalink | Comments (4)

The kid is mobile now, and with that mobility comes the baby-proofing of our home.  We have those little electrical socket covers on each outlet, the coffee table corners are capped with squishy edges, and a big ol' gate at the base of our staircase is locked and loaded.  So now, anything that BSparl shouldn't touch for fear of hurting herself is as carefully guarded as possible.

And I wish I could say the same for me.

Will power is not my middle name.  (It's "Morrone," switched from "Lynn" when I got married.)  I'm good when it comes to action-oriented plans, like resolving to test my blood sugar more often throughout the day, or making sure I exercise at least four times a week.  These plans involve getting up and doing something, and I'm motivated when it comes to checking that box. 

But the plan to NOT do something?  Little more challenging.  

Food has always been a bit of an issue for me.  Not surprising, since type 1 diabetes has a firm foothold in my dietary decisions and guilt about said decisions.  (Sneaking cookies?  I may have done that one or two ... thousand times as a kid.)  Growing up with type 1 diabetes and using the peaking insulins (NPH, Lente, UltraLente) that required timed meal structure, I was a card-carrying member of the "clean your plate or you will end up low" club.  It actually wasn't until I started using an insulin pump that I realized what "hungry" felt like, having been on an eating schedule for the previous seventeen years.  Adjusting to the fact that I didn't HAVE to eat was new.

In addition to that "Hey, hunger is confusing!" feeling, food is a confusing friend/enemy.  Frenemy.  Even at times when my blood sugars are completely in control and an Italian bread smothered in olive oil and salt indulgence-fest doesn't cause massive spikes, I still feel guilty about eating it.  Like someone is watching me, and I need to hurry up and swallow before they see me take the bread.  It's a very screwed up way to view something as fun and delicious as food, but it's a combination of the influence of diabetes on my food philosophy and the guilt assigned to something as benign as a banana.  (That, and how women are taught to view their bodies and their appetites of all kinds ... but that's a whole different post.)

Which brings me back to my problem:  not doing something. Avoiding certain foods at certain, inopportune diabetes times.  Not eating the bowl of pineapple when the Dexcom shows double arrows pointing up.  (Why IS it that high blood sugar equals ravenous hunger?  Seems like a cruel twist to me ...)  Not buying E.L. Fudge cookies.  And if you do buy them, not eating a whole sleeve on the ride home from the grocery store. 

Sometimes I want to Kerri-proof the kitchen.  

Maybe I should just stick an electrical socket cover in my mouth.

Posted by Kerri Sparling at 09:29 AM | Permalink | Comments (27)

A few weeks ago, Chris and BSparl and I went out to dinner.  Dining out with our little bird is a bit of a tangled experience, and we don't spend as much time people watching as we used to because we're very preoccupied with the baby wrangling. 

That night, though, we were sitting and settled and throwing gluten-free puffs (yes, all of us) around the dinner table like confetti when I saw this woman walk in with her family.  She settled her family in at the table, and then reached to remove her coat, revealing a beeper clipped to her pocket.

Only it was one of them fancypants beepers with the tubes and the buttons and the accompanying not-making-insulin pancreas.  Reckon it was an insulin pump.

Immediately, I wanted to swing mine over my head like a lasso and say "OMG lady, me too!!!"  I've had this feeling before, of wanting to sidle up next to someone and say, "I like your pump; want to see my pump?" but to me that sounds more like an awkward attempt to flirt instead of a moment of diabetes bonding.  Living in a very comfortable bubble of diabetes advocacy makes me think that everyone who has a visible "symptom" of diabetes wants to talk about it.  I have to remind myself that some people just plain don't want to talk about it.

But since I still wanted to say something, I targeted Chris instead.  

"Dude, 12 o'clock.  Actually, my 12 o'clock, your six o'clock.  Minimed pump on that lady."  I said to Chris without moving my lips, as if a pump sighting was a covert Navy Seals operation.

"Six o'clock?  Okay, do you guys know one another?  And why are you whispering?" he whispered back.

(I love that because she and I both wear pumps, we must know one another.  I've brought him right into this bubble with me.)

"No, I don't know her.  I have no idea who she is.  But I just saw her pump."  I paused, still whispering.  "And I was like a toddler, wanting to wave my arms around and say 'Pump! Pump!'"

He laughed.  The waitress came over to bring our food, and the two of us were immediately distracted by keeping BSparl's grabby little hands away from the hot plates. We had a nice dinner, and I sort of forgot about the fellow Navy Seal at the other table.

... Until we were leaving the restaurant, when I saw her glance at my hip (where my Animas Ping was tucked away), nudge her husband, and give a little nod. 

In my head, she whispered, "Dude, four o'clock.  Animas Ping.  Hooyah!"

Posted by Kerri Sparling at 09:51 AM | Permalink | Comments (55)

Dear Birdy,

Sweetheart, you are ten months old today.  We're already thinking about your first birthday party (which makes me a lunatic) and I'm excited to play outside on the swing set this spring.  But these moments right now are awesome, watching you become the little person you will be.

Nothing is safe anymore.  I blink and you slingshot yourself across the room, giggling.  A few weeks ago, I was trying to entice you to creep across your bedroom floor, but now you are unstoppable.  I've never seen a critter scuttle with the kind of awkward intensity you possess, and the fact that even if you end up fumbling and headbutting the floor, you're still up and moving forward in a matter of seconds. I think your forehead is made of steel.  Or whatever material super bouncy balls are made of. 

And despite the pile of toys in the basket in the living room, you want to play with the Forbidden Items:  The remote, my pump, the outlets, and my cell phone.  Even if I pour the entire bucket of wooden blocks onto the floor and they make that lovely wood-against-wood clattering sound, your head whips around if the cell phone lights up and you're off to try to lick it.  God forbid I try to bolus in your presence; you're mouth pouts into a perfect "O" as you reach for the awesome beeping machine.  (Usually scoring a grip on the tubing and flapping it around while you laugh and say "bababa.") 

Your vocal stylings continue to impress me, my lovely bird.  You've figured out just what that baby monitor camera does, and in the wee hours of the morning, Daddy and I hear you starting to stir in your crib.  "Bah bah bah."  And then we look at the video monitor screen and see you staring intently back at us, opening your little rosebud mouth to carefully and clearly say "Dada."  At which point, Chris sighs and smiles and says, "I'll get her."  And then I am quietly thankful that you don't quite say "Mama" with such clarity yet.

I'm not sure when it's going to happen, but I see walking in our near future.  Which is terrifying, because when you stand up on your chubby little legs, it amazes me that you're still such a pipsqueak.  We were just at the pediatrician two weeks ago and you are still on the peanut side, but like a peanut with leg and belly rolls.  (Basically, you look freshly baked and I think if I poke you in the belly, you will say "hee hee!")  But we're ready, with the child-proofing in full swing here at home. 

And, like your mama, you love books.  But while I'm more of a reader, you let us know you favor a certain volume by trying to eat it.  "All the hippos go berserk!" I read out loud, and you clap your hands and then try to chompy on the pages.  You love being read to, and you love doing your own version of reading, as well.  (But I love the look of grown up concentration when you hold the book on your own, furrow your brow, and turn the pages with practiced ease.  With the book upside down.)

You make everything feel like it's new and shiny and covered in sticky fingerprints, and I love you more than I ever thought possible. 

Love,
Mommy.

Posted by Kerri Sparling at 08:33 AM | Permalink | Comments (17)

Oh rotting, feeble pancreas of mine,
Won't you be my Valentine?
Won't you wake from your long sleep
And make some insulin, you creep?

What makes you sit, all shaped like a wiener,
Lazy and dull, with a pompous demeanor?
What makes it okay, that for your enjoyment
You've spent twenty plus years filing unemployment?

We need to start over; we need to be friends.
We need this whole type 1 diabetes to end.
I'm tired of shots and I'm sick of the lows,
So I think we should talk about ending this row.
I could use a break, my corn-cob-shaped friend.
I'd love to have 'old age' listed as my end.
I think that your time off has drawn to a close.
I'd like working islets, and plenty of those.

How 'bout it, old pal?  Care to start working?
Care to start minding duties you've been shirking?
I promise to be an attentive best friend,
I'll thank you each morning and as the day ends.
I won't take for granted the hormone you make
And I'll forgive you for the last 24 years' mistake.

I've brought you some flowers and a Border's gift card,
In hopes that when I bring milkshakes to the yard
You'll be so inclined to jump start all those islets
Who've been holding their breath for so long that they're violet.

So what do you say, oh pancreas of mine?
Won't you be my Valentine?

Posted by Kerri Sparling at 08:27 AM | Permalink | Comments (38)

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!

Posted by Kerri Sparling at 09:20 AM | Permalink | Comments (64)

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

Posted by Abby (the Person) at 08:37 AM | Permalink | Comments (38)

When I look at the graph on my Dexcom, I like to see a nice, flat line.  You know, like a bread stick (that would be flat if I had rotated it a bit in Photoshop but I forgot and now it looks a little like it's a rising blood sugar holy run on sentence AGAIN #Bes).  Imagine it flat:

And there are some days when the stupid thing looks exactly like a giant letter M, having tea with a giant letter W:

I aim for no-hitters as often as I can, but it seems like tea parties are all the rage these days.  I need more breadsticks.  

(And now I'm seeing CGM graphs everywhere I look, and it's freaking me out.)

Posted by Kerri Sparling at 08:25 AM | Permalink | Comments (18)

Today is my birthday.  There's a good amount in my life that needs to be worked on, but there's so much that's great without effort.  Like my family.  And my littlest bird.  And all the support and inspiration I get from you guys.  I'm really grateful.

And I am happy.

Posted by Kerri Sparling at 09:24 AM | Permalink | Comments (58)

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?). 

Posted by Kerri Sparling at 08:43 AM | Permalink | Comments (307)

The other night, I ended up swept into something work-related and didn't smash my face into the pillow until almost 2:30 in the morning.  (If I had been forced to be at work for the breakfast shift at 6 am, it would have been a perfect college throwback.)  So when morning rolled around I started hearing the "Dada, dada, dadaaaaa" coming from the baby monitor as BSparl shuffled her fleece-covered feet in her crib, I was beyond exhausted.

"Mama," I said to the video monitor, trying to will her to say it from our bedroom.  "Say Mama, little bird."  I rolled over and grabbed my meter off the nightstand, fumbling with the lancing device as my hands woke up.

Okay, 68 mg/dl.  The Dexcom confirmed with a flatlined 70 mg/dl, so I at least knew I wasn't tumbling.

The lump in the bed shaped like Chris turned towards me.  "Want me to get up with her?"  

No hesitation.  "Yes.  Yes, I do."  I flopped back down into bed and closed my eyes.  On the monitor, I heard Chris rescuing BSparl from her crib, and I tried to get back to sleep.

Oh wait.  That low blood sugar.  Damn it.  

I foraged underneath the blankets for my pump and clicked through the screens until I hit the "temp basal" option.  I wound the basal down to 0% and set it for one hour, knowing that an hour without my morning basal bump would be just enough to bring me from upper 60's to the upper 90's.  And then I wouldn't have to get up out of bed to get juice.  I could just sleep.  Ahhhh, blessed sleep.  I set the pump to run at 0% basal for an hour, and then snuggled back underneath the comforter.

Fur Elise rang out from underneath the blankets, the pump vibrating as well.

"What???"  I fumbled for it, and the screen cheerily told me that the pump wasn't delivering insulin.  Smile!

"I know.  It's on purpose.  Shut up," I mumbled to it, clipping it back on to my pajamas and trying to sleep again.

BEEEEEEEEP! the meter case sang from the bed stand.  

"What, now you?"  I looked at the screen and it, too, reminded me that the pump wasn't delivering any insulin.  

"Argh, stop!"  I smashed against the buttons with my fingers and the meter stopped nagging.  Then the Dexcom starting wailing, because it finally realized my blood sugar was under 70 mg/dl. 

"It's okay, stop making noise.  I'm fine.  Everything is fine would you people please just shut up and let me sleep I am exhausted run on sentence."  I babbled, mushing my face into the pillow as the pump started vibrating again, just in case I didn't know that I was running a 0% basal.

Thirty minutes later, after muting the meter, the Dexcom, the pump, and my temper several times over, I finally gave up and shuffled downstairs.  

"We're okay, baby.  You can go back to bed," Chris said from the kitchen, where he was making breakfast and BSparl was happily chomping on some puffs.  

"Nope.  I had put the pump on a temp basal to head off a low.  It worked - I'm 98 now, but sleep was thwarted by all the reminders from my diabetes crap saying 'OMG you are on a zero percent temp basal!'"  My grumpiness was tangible.  I was rambling borderline incoherently to Chris about diabetes math problems.  The baby was making faces at me from her highchair.  "Baa baa!"

"Hang on, Little Birdy.  Momma needs to make some coffee."

BSparl raised her tiny fists in the air and tossed a few puffs in my general direction.

At least she had the decency not to BEEEEEEEP!

Posted by Kerri Sparling at 09:16 AM | Permalink | Comments (28)

Today, I have the honor ot posting a guest post from Kim at Texting My Pancreas.  I'm not going to lie - Kim is one of my favorite new(ish - she started blogging last year in June) diabetes bloggers and her posts made me grin and think, all at once.  (Which makes for a weird looking grimace, but that's okay.  I really enjoy the reads.)  Thanks for posting, Kim!

I have one of the worst roommates ever.

At least, that’s how I like to think of diabetes and I. We might both live in this body, but I was here first - which means I get the final say on things like decorating, and whether or not we should make room on the DVR for Glee.  (Answer: “Yes, of course”.)  

On most days, I can accommodate my roommate’s eccentricities. He’s easily offended over some of the foods I really enjoy (like breakfast cereal and delivery pizza), and I try to respect that. He’s introduced me to some pretty great people over the years, though I’m not sure he realizes that they don’t hold him in very high regard. He can be a good motivator when the mood strikes him, and I often like to prove to him that he isn’t always the boss of me. (See also: doing my first half-marathon last year.)

However, if you live with the same kind of roommate I do, you know that he also has a darker side. There are nights diabetes has kept me up on an all-night juice bender; stumbling down the hallway and sweating through my pajamas. He’s left me stranded, far from home, with a deficit in both blood sugar and glucose tabs. Diabetes doesn’t have much consideration for timing - he’s happy to barge in on holiday celebrations, job interviews, school exams, and even weddings. He can give you a pretty epic headache, steal away your patience and rational thinking, and leave unsightly blood stains on your favorite shirt. Diabetes is a jerk, like that.

Given all this, you can understand why living with diabetes wasn’t a situation I felt comfortable with in the past.  At least, it wasn’t until I found a whole mess of other people online who, it turned out, knew exactly what this is like. They, too, were roommates with this unpredictable and moody rascal. The burden of living with diabetes started to seem less heavy. Truthfully, I hadn’t realized just how heavy it was until I found I wasn’t the only one carrying it around.

Though I haven’t been blogging for very long, I’ve quickly found that sharing my story - and making fun of diabetes whenever possible - is an integral part of keeping myself healthy. Writing about the good, the bad, the funny and the frustrating - and finding that others share those same experiences - helps me validate the concept that I’m not alone in this. Feelings of isolation get replaced with connection and camaraderie. The act of living with diabetes became a “team sport”, which helps me feel eager to suit up and tackle it each day. It’s also handy to have folks around who can answer questions like, “Where, exactly, on my thigh should I put an infusion site?”, and “Do I really have to pull my Dexcom sensor after seven days?”.

Diabetes: you may be a horrible roommate, but you’ve introduced me to some wonderful friends, and for that I can be thankful. 

We’re all anxiously awaiting your eviction notice, though, buddy.

Thanks for the great post, Kim.  And by the way, I wear my Dexcom sensor on the outside of my thigh. :)

Posted by Kerri Sparling at 09:19 AM | Permalink | Comments (19)

The game: Hammer vs. Doughnut



The players:  Chris gives her both toys (the yellow ring apparently is "doughnut") and he encourages her to bang the two toys together while he sings "Hammer versus doughnut! Hammer versus doughnut! This is what happens when an unstoppable hammer meets an immovable doughnut!!" 

 He laughs.  She giggles uncontrollably and battles on with the aforementioned hammer and doughnut.

The conclusion:  I realize that she is all him, through and through. I live with two strange birds.

Posted by Kerri Sparling at 10:25 AM | Permalink | Comments (14)

After college, I moved in with my then-boyfriend and we lived together for about five years.  But when he and I broke up, I lived alone for a little over a year before Chris and I moved in together.  (And by "alone," I mean with Abby the Cat and then Siah Sausage was introduced to the fray.  But neither of them were able to handle a low blood sugar effectively, so they were useless, in a diabetes sense.  ... except that whole "Abby sensing low blood sugars" thing ...) 

Living alone was a big thing for me, because I was always fed the line "You are diabetic; you shouldn't live alone."  And for a long time, I was scared to be by myself.  But after spending those first few weeks alone in my brand new place, alone for the first time ever, I felt empowered.  I know my mother worried - she called every morning - and my grandmother used to drop by "unannounced" (but she was checking to make sure I was in one piece), but I understood why they checked in on me.  Lows were a constant and scary threat.  It was a big adjustment, going from being under the constant care of my college roommates and then my boyfriend to being solely responsible for myself, but I liked it.  I felt like it lifted me up, emotionally, and showed me that I can do anything, with or without the diabetes crap. 

Abby (the Person) talked with a few of her PWD friends about living alone.  Some are in their own apartments for the first time, some are adjusting to college, and some are getting ready for that first leap into living on their own.  Here are a few perspectives on what it's like to live alone with diabetes:

Katie M.
I'm in my junior year in college now, so have been more or less on my own for about three years now. The transition did a number on my A1C because I really don't like being low. Although I know that high numbers can be just as dangerous that's definitely the side I air on because they're much less immediately debilitating - key word immediately. My precautionary tendency is to run high, flawed logic though it is. It's also been very important and helpful for me to be open about my diabetes and to create a support system for myself at school - I mention it to my professors at the beginning of every semester and have friends who I trust and who are interested. This way I have people in my daily life who more or less know what's happening when I talk about diabetes related things and who I can count on to help if need be.

Arianna J.
I've been managing my diabetes on my own for 8eight years now and I'm so used to doing it on my own that I have a really hard time letting other people help. I even get nervous at the doctor's office because I would really like to do my own shots and don't trust other people giving them to me.  Living on my own, I try to keep in touch with other diabetics because it keeps my mind thinking about the best things to be doing (like checking and bolusing), aka the basic things that sometimes are easy to forget in the college life.  I also like to feel like I can complain to others who understand because that keeps me from getting super discouraged every time I'm low or high and just sick of diabetes in general.  Keeping a sense of humor has really worked the best for me.  But now, I have to say that I wish I didn't take so much control because right about now I wish I could go back to the 7 year old phase where someone else does it all for me, but as for now not taking it too seriously seems to be going pretty well.

Samantha S.
There are definitely pros and cons of living on my own. On the one hand, it gets a little lonely, as my D-support team is rather far away (aka my family, aka my parents and camp-friends). Sometimes when I'm really low, I get scared that I'll pass out before I can grab the OJ from the fridge. But living on my own has given so much independence, and so much maturity. My mom no longer comes to my endocrinologist appointments with me, I'm responsible for communicating my questions and concerns. If my pump breaks, I'm the one on the phone to Minimed. Living on my own has made me grow up, like it does for most "aspiring adults". However, living on my own with diabetes has certainly put me on the fast-track.

Bethany K.
Living alone is the best thing I have ever done for myself. However, right before I moved into my new  apartment, I started having second thoughts.  Cold feel. Butterflies. If I move into a new apartment on my own, who is going to take care of me if I have an emergency?  What if I have an extremely low blood sugar and need help, but no one knows it because I live on my own?  What if something horrible happens to me while I live here as a single, young lady who just happens to have type 1 diabetes?  ... So far, so good. It has only been 3 months now, but I've grown so much from this time on my own both personally, spiritually and emotionally.  Also, when it comes to my diabetes, control has only become tighter. Not only do I not need to worry about what my roommate is going to say when she gets home, but I've also found that I have more peace of mind if my blood sugars stay within the range of 90-130-which in the end lead to a 1/2 point drop in my A1C.  So, living alone is pretty great. Are there demons I had to overcome? Definitely. Do I still worry sometimes? For sure, but I have made friends in my complex who know about my diabetes.  I live across the street from a friend from diabetes camp who would be here in 2 seconds flat if I needed her. I am proud to say that I'm doing alright and I recommend living alone to every person at some point in their life. It will change you for the better.

Briley B.
I technically don't live on my own; I have a roommate.  Except that she is clueless about diabetes, even though her own mother also has T2.  Her mother has tried to ignore it for many years though, so I can understand that.  I have to say that when I first realized my roommate was clueless, and after my dia-buddy left again, is when I started my blog.  It helps to write, and then notice what is going on in my diabetes life. I have my glucagon next to my tabs and juice boxes next to my bed.  And I talk to my mother every morning before work (I'm the one to call her).  I try to test before I go to bed and when I wake up.  That way I am at least safe during my unconscious hours.  I've been testing more regularly, but whether that's because of living alone or just growing up, I'm not sure.  I also have everything organized so that if anyone needs to come in and help me, they can easily find it.

Abby Bayer.
The first time I moved out into a dorm room for college, I didn’t really consider diabetes an issue, but more a part of my life that needed to be packed up and brought with me. I bought a tall plastic drawer thing (that most college kids buy) and filled two of the drawers with diabetes supplies.  I also made sure that I had my own mini-fridge to ensure that people knew the stuff inside was off limits. My roommate was totally cool with it, and we just stayed away from each other’s refrigerators.  People often came in and took my snacks (crackers and such), but they also hung out in my room and were my friends, so I kind of took it as a loss (and borrowed things from them without guilt). When I finally got my own house in college and was off the meal plan, I made it a point to try to cook healthy and make sure my house-mates knew I had diabetes and that some of the stuff was simply to be thought of as my medicine, and not as food.  I’m nervous to ever live completely by myself, but I’m sure I’ll come up with some sort of system to make sure I’m safe, and that I can keep my health a priority. It’s also a wonderful conversation starter when people see Arthur or Sesame Street juice boxes in a 20-something female’s kitchen.

Thanks for sharing your perspectives, you guys! 

Are you a PWD who has some insight on living alone, or making the choice to avoid living alone?  Are you a parent who is nervous about their kid going out on their own?  If you have insight to offer, please do!  :)

Posted by Kerri Sparling at 09:34 AM | Permalink | Comments (37)