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May 10, 2007

Your Story

There are many of us who blog about diabetes.  (Thank goodness - for years, I was wondering where all you guys were hiding.) 

Your Story on Six Until Me.

I've been fortunate to have this blog as my soapbox, venting station, and outlet for sharing diabetes moments.  The effects blogging has had on my life are tremendous and having the opportunity to share my story has made me stronger.  This community is the best and has made such a difference in my diabetes life.

However, there are so many more who may not have the time to blog.  Maybe they are reluctant to share so much of their life online.  Perhaps they just need a few minutes to "aaaarghh!" or ask questions or connect with other diabetics ... or just plain tell their story.

I've put up a section of Six Until Me. called "Your Story."  It's for people who want to share their story - or questions, poems, pictures, videos, frustrations, successes ... you get the picture - with the ever-supportive blogosphere.  You send it, I'll post it.  It's easy.  And it could be fun.

Are you living with diabetes?  Do you have a child with diabetes?  Your husband?  Mother?  Your girlfriend?  Your uncle or aunt?  Maybe even your cat?  (Oh damnit, Siah, stop playing with the keyboard.  Man, you are annoying.) 

Do you want the chance to tell your story? 

Share your story by sending it to story@sixuntilme.com.  

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April 17, 2007

Reader Response - Her Own Pump Poem

From the ol' mailbag.I received one of the best emails EVER yesterday, from Kymberly in New Jersey, in response to my poem - Pump, O Pump. Here it is:

Hi Kerri, my name is Kymberly,
I've had diabetes since 1973.
Found your site doing an internet quest:
"Where to put a pump when wearing a dress".

Saw your post today about your pump
And had to email, cuz' I'm in a slump.
Have taken injections for 34 years
And the ever-imbedded cannula is what I fear.

The doctor says that it's my decision
But a lower A1c he can envision.
It's something I long for - tighter control,
A long healthy life is the ultimate goal.

Your website answers alot of my questions
Along with giving helpful suggestions.
Figure I've got to give the pump a 3-month trial
To see if the partnership is friendly or hostile.

Diabetes can be so easy while other days it's a curse,
But I always remember I could have it worse.
I prick and I test with the goal of perfection
And feel like I failed when it doesn't meet expectation.

So just wanted to write and tell you "hello",
Congratulations on your engagement to your beau.
I'll keep checking your website to see what you wrote
And I'll let you know if the pump gets my vote.

Regards,
Kymberly McDonald
from Texas but living in NJ."

If you have any tips to offer up to someone who may be teetering on the edge of deciding to pump, have at it!

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February 21, 2007

Unlocking the Memory.

Strange, this "blogging."  Unlocking this memory.

It’s one of those things that I never expected would interest me, and then once I started, I never expected anyone to read it.  I write this stuff to get it out of my system and to deal with the emotional aspects of being diabetic.  And I write it so that the parents of diabetic kids, and the diabetic kids themselves, will maybe read it and see that they’re not alone. 

But mostly, I write it to write it. And I never expected anyone to read it.

Which is why writing about a moment that made me feel so vulnerable didn’t really give me pause, because who would see it, really? 

Written back when I first started the blog, I told the story about a time when I was in 5th grade and a classmate made me feel like … well, “Crumbs Morrone.”  She and another classmate had left a note in my locker about how they hated me because I was diabetic.  It was a dark moment in my diabetes memory and one that I haven’t forgotten about, even now, so many years later.  But I did keep it locked up and close.

It’s been almost two years since I started blogging.  I had sort of forgotten about that post.

Until I received an email from that classmate.

“I don’t know why I’m writing you.  … I guess the only thing I can say is I’m sorry.  I wanted to let you know that it is one of the things that I remember and regret daily.” 

I haven’t talked to this classmate in ten years.  I never thought she would ever read my blog.  The shock of hearing from her was tremendous.

“I work at a high school now and one of my students is diabetic.  I’ve told her the story about what I did to you one day when we were talking one-on-one.  I explained how mean I was and how ignorant.  And I told her about your blog.”

I can’t help it – I start to cry at this point. 

“I wanted you to know what just as you remember, so do I.  And it still stings my memory as well.”

Thank you, Red Headed Girl, for letting me unlock this memory and set us both free.

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February 14, 2007

The Peanut Butter.

Before we moved in together, I lived alone in a very cute apartment in South County, RI.  He came over one night after work and we made a trip to the grocery store.  As we unpacked the bags, I told him I had a very strange habit once I developed a crush on someone.  It was silly and childish, yet I was still doing it.

It involved peanut butter.

“If I buy a new jar of peanut butter, I peel back the foil and use the tip of a knife to write in the name of the person I have a crush on.”

He looked at me with an amused grin. 

“You do?  Really?”

I blushed.  “Yes, I do.  I know it’s a weird habit.  But I keep doing it.” 

“Have you ever written my name?”  He poked me gently in the ribs.

“Yes.”  Face on fire now.  Why was I telling him this?  I sounded ridiculous.

We finished putting away the groceries. 

A few nights later, as I was alone in my little apartment, I reached up into the cabinet and grabbed the new jar of peanut butter.  Knife in hand, I unscrewed the lid and prepared to etch his name.  I smiled to myself at the goofiness of it all. 

I lifted off the lid and the knife clattered to the countertop.  I couldn’t help myself from smiling and my eyes filled with tears.My name in the peanut butter.

In the top of my new jar of peanut butter, he had written my name.

He inspired me to start this blog and he supports every bit of this adventure.  He moved away from home with me so I could pursue a career at dLife. (He even helps me check for typos.)  He makes me laugh every day.  And he tolerates my idiot cats.

He is my best friend and I love him dearly.

Happy Valentine’s Day, Chris. 

I still write your name in the peanut butter.
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February 06, 2007

From my friend, Demarco.

Six year old Demarco and his mother, Kate, read this blog from their home in Australia.  Kate reads the parts outloud to Demarco that are appropriate (apparently he thinks Siah is pretty darn cute) and sometimes he sends me emails that make me laugh out loud, other times they just about break my heart.  Recently, Demarco did his own edition of a "Letter to My Pancreas," that I had to share with you.

Thank you, Kate, for letting me post Demarco's letter.  He's an inspiration, my friend, and his letters always make me smile.  I'm proud to share him with the readers of Six Until Me.  (Hello, Demarco!)

Dear Pancreas,

You and I were good friends before my second birthday. You helped me grow from a little tiny baby into a big boy who could walk. My mum had planned a Bob the Builder Cake for the 23 November, my 2nd birthday. For some reason though, every time I thought of that cake I didn’t want it as much as I used to.

On the 1st November, you stopped being my friend. Mum stopped talking about the Bob the Builder cake. I didn’t know I had a pancreas. I didn’t know what you did, or where you lived. I thought you were going to help me grow into a big man.

Now that I am 6, I know what islet cells are, and I know my body destroyed them by accident. It was a pretty big accident though, Pancreas, I looked at a picture on my Mum’s computer. You look like a bean! A trouble-making bean…

I have learnt lots about you now and why you stopped working. Just like when a car runs out of petrol. I have 4 needles a day now to replace the insulin you can’t make anymore. My mum’s eyes looked so sad (even though she is always happy) whenever she had to give me my medicine, so now I have decided to do it myself. What I just wanted to ask was, I know the doctors’ are helping, I know JDRF are working super hard and I know everyone wants a cure. If one day, please, you could just wake up again, and let a couple of islet cells escape, maybe then you will remember what to do and how to work again.

If you can’t do it though, I understand.  I know how it feels to be different from the other kids. You must be feeling the same way, living so close to the liver and the stomach. I hope they don’t tease you.  One good thing is that, even though you stopped working, I got to go in a plane and see Parliament House and see John Howard!  Not many kids without Type 1 Diabetes could say that. I’m not angry I have Type 1 Diabetes, and I’m not angry at you. I am really patient and have learnt how to wait for scientists to help you work again. I want to be a zoo keeper when I grow up. I have heard that Diabetics can go blind after a long time with no cure…if I went blind, I couldn’t feed the lions or they would eat me!

I believe in you, Pancreas.

Your owner,
Demarco

Demarco

 

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January 24, 2007

Kitty.

They told me I had to go into the hospital for a few weeks.  I wasn’t exactly sure what “diabetes” meant, but I knew it must involve vampires, because people were drawing my blood every few hours.

“You can pick any friend you’d like to bring with you to the hospital.  Any one you want.” 

My father held my hand as we walked into Ray Willis’ Toy Store and I looked at the rows and rows of cuddly and soft stuffed animals.  My seven year old shoes clicked against the tiled floor as I examined the fare.

The soft ears of a gray elephant looked so nice.  I could picture myself hiding behind them if I was scared.  I saw an amber-eyed puppy dog with a pokey little nose.  He looked like he could be my friend.

Then I saw it.My beloved Kitty.

Kitty.

A huggable, marmalade-colored stuffed animal cat with bright eyes and a long, fluffy tail.  He was sandwiched between a giraffe with the tongue sticking out and a stuffed octopus (can’t figure out why anyone would make one of those). 

I reached out with my little hands and grabbed him from the shelf.

“This one?  Is this one okay?”

My father gave me the thumbs up.  “That one looks good to me.”

Mom and Dad paid for Kitty and we started our drive up to the hospital for my overnight stay.  Originally named “Tigger” but eventually falling victim to a less imaginative moniker of “Kitty,” I kept this stuffed animal at my side for every blood test and doctor visit.  He was a loyal friend and received the occasional shot, too, when I wasn’t feeling brave enough to be the only one being injected.

I used to wag his tail and make him wiggle about, trying to convince people in the hospital elevators that he was real.

A boy on the bus in second grade tried to pull Kitty’s arm off and gave him a good rip.  I cried to my mother, who was about to sew up the wound with orange thread, that she needed to use black thread so it would look like a stitch and I would know he was better.  Ever-obliging, my mother stitched Kitty up and I admired his war wound with fascination. 

Twenty years later and no longer the newly diagnosed little girl at the toy store, I've had this Kitty with me through it all.  He used to look vibrant and fluffy, but now his fur is matted and mangy.  He lived on my bed in college.  He moved to my first apartment with me after college.  Even when I felt “too grown up” to have a stuffed animal on display in my house, Kitty has managed to weasel his way into a bookcase or a closet shelf.  Currently, he lives on top of my winter sweaters in my closet, looking at me with his matted fur and sad eyes from the mountain of wool and cotton.

He made me feel comforted.  Admittedly, he still does.

He’s a testament to how long it’s been.  And how far I’ve come. 

(But Siah doesn’t like him too much.)  

Siah is not a fan.
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October 15, 2006

JDRF Walk to Cure Diabetes

The Temple at RW Park

The day dawned bright and crisp.  Roger Williams Park in Rhode Island served as a gorgeous backdrop for Team Six Until Me. to make their second annual JDRF Walk appearance. 

There were over 4,000 walkers this year and among thSandra and Kerri.em were my mother, step-father, Chris, Chris' sister and brother-in-law, his adorable niece, oh, and a Special Guest:

Team SUM had the pleasure of Sandra Miller and her sister joining up for the walk! 

Fresh from the blistering Wisconsin cold and recovering from a surprise party in MA the night before, Sandra made the jaunt to RI to walk with our team.  And yes, as you probably guessed, she is as warm and gentle in person as she is on her blog.  Funny, quick to smile, and fiercely passionate, Sandra and her sister were a much-appreciated addition to Team SUM.  (It was cool watching her and Chris chat about "Uzi" and seeing she and my mother exchange hugs even though they've never exchanged words before.  This internet is an amazing thing.)

We walked.  We chatted.  (Chris served as our photographer.  Thank you, Chris!)

Walk Chats.

We saw Ronald McDonald.  And I had this uncontrollable urge to hug him. 

Ronnie.
Our team crossed the finish archway after a brisk 5 mile walk (yes, that is a just-in-case can of juice in my hand) and I was just so damn proud to have this collection of people in my life. 
The Finish Line. 
Walking in that enormous pack of people, all supporting the same cause and harboring the same hopes, I felt like I was a part of something bigger than just testing and shooting and counting carbs.  All of those people, walking for a cure.  It highlights one of the best parts of the human spirit:  that sense of unity.

We're all in this together, no matter how far apart we seem at times.

Steve.

And, of course, my man Steve was there again.  Here's to you, Steve.
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October 03, 2006

Blogging Across Boundaries

Blogging Across Boundaries.“Because the internet should be a tool for bridging gaps as well as building communities.”

This line struck me most about Andrea’s call for entries for Blogging Across Boundaries.  Bridging gaps as well as building communities. 

There are plenty of gaps in the internet communities I find myself a part of.  It’s not so much between the topics we cover when we write, but more about bridging the gaps between the words and the people. 

There’s something about meeting these people in person.  These people whose intimate details you know but whose faces you can barely begin to picture.  I have had the utmost pleasure of meeting several bloggers in the past and it’s always this startling combination of comfort, ease, and laughter.

This past week was no exception.

Early last week, I met a fellow d-blogger who announces herself online as Violet.  (Real name remains under wraps, until she uncloaks at her own discretion.)  It's a strange thing, meeting a fellow blogger for the first time.  I wonder if it will be awkward.  Will we get along as well in person as we do online?  What happens when I finally have a face and a voice for this writer I enjoy so much? I stood in the middle of Grand Central Station, looking every inch the Country Mouse.  I have posted pictures of myself online (why why why do I do that?) so I was recognizable, but what she looked like was a mystery to me.  She said she would meet up with me, so I stood like a kid lost in NY until I heard a voice say, "Kerri?"

"Violet??"  Knowing full well that wasn't her given name, but instead the one she goes by online to protect her anonymity, I leaned in to give this stranger that I knew so well a hug. 

When two people meet for the first time, there is often that awkwardness that needs some time to dissipate.   Strange thing, though, meeting a fellow blogger whose heart and soul you have peered into for the last year and a half.  Who was one of the very first bloggers you ever knew existed, well before the explosion of diabetes blogs.  Stranger still, having a discussion about very deep-seeded fears and knowing exactly what she means when she sits in silence.  And possibly the strangest of The bridge to Pumplandia?all, feeling comfortable – instantly comfortable – with someone you’ve never met before.

Weblog.  We blog.  Some of us blog daily.  Others blog when the inspiration strikes us.  We blog about such a wide array of things, ranging from politics to medicines to emotions to experiences.  We don’t share the same experiences.  We don’t have the same backgrounds or interests or opinions.  Yet we are all able to meet together on the web and offer up glimpses into our lives, embracing as a community despite the fact that we wouldn’t know one another if we passed on the street.  Meeting my fellow bloggers has helped to make them Real, in ways that the internet, despite its constant advances, can’t rival.

There don’t appear to be many boundaries, just a lack of bridges. 

Here’s to bridging the gaps. 

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September 28, 2006

A Penny for my Thoughts.

The little bastard.My head has been in the clouds lately.  But I want to thank you for your very kind comments.  They've provided me with much-needed solace this week.  I'm currently regarding this issue in my eye as a very annoying Squirrel that has taken up residence.  I will drive him from my tree (read: head) and send him on his merry way.  Whatever it takes:  more time at the gym, tighter blood sugar control, easing off the stress in my life to keep my body calm ... I'll do everything I can to keep this Squirrel at bay.   And if he's still there in six months, so be it.  As long as he doesn't bring more friends.  Because if I end up with a head full of Squirrels, I'm going to laser the hell out of them and they'll be sorry they didn't leave when they had the chance.

Whoa.

Very long-winded metaphor there.  But I'm sticking with it.  Here's to the banishment of The Squirrel.  He won't drive me nuts for long.  (Ah, there's the pun.)   Until then, and forever more, it's business as usual.  Forging ahead.  And with that, I've stolen a meme from Sandra (who stole it from Penny) in efforts to get my head back in the game.

***     The MEME.     ***

Do you still have tonsils?  Yes.  They are back there in my throat, along with that hanger-ball thingy.

Would you bungee jump?  Oooh, no thank you.

If You Could Do Anything In The World For A Living What Would It Be?  Write.  Ah ha!

How many tattoos do you have?  
None.  I never liked the idea of a stretched out, aging dolphin or rose.
Crimey, DM!
Your favorite fictional animal? 
Danger Mouse.  Dashing,  British, and best friends with a hamster named Penfold.  That’s a triple win.

One person that never fails to make you laugh? 
Nurse Best Friend.  She and I make no sense to anyone but each other, and it’s damn funny every time.

Do you consider yourself well organized? 
Yes.  No.  Um, what was the question?  Hold on, I need to grab a pen...

Any Addictions? 
Coffee.  Trashy magazines in the aisles at supermarkets.  (Oftentimes, Chris is kind enough to unload the grocery cart so I can stand there and read the magazines on the sly.)  I think I’m addicted to blogging.  And I really do like driving fast.    

From what news source do you receive the bulk of your news?
Sigh ... Yahoo.  I’ll admit it:  I get most of my current news either from Yahoo news blurbs or Jon Stewart.

Would you rather go to a carnival or circus?  
Carnival.  Where else can you toss a ping pong ball and score a goldfish? 

When you were twelve years old, what did you want to be when you grew up? 
A writer.  And taller than I was at the age of 12.  I’m one for two at the moment. 

Best Movie You've Seen This Year? The Illusionist.  Or Little Miss Sunshine.  Both brilliant.

Favorite alcoholic drink? 
Pinot grigio.  Or a madras.  And I’m in the process of developing a taste for Corona.  More on that once I’m convinced it’s not actually carbonated bread.

What is the first thing you do when you wake up in the morning?
Remove the sleeping Siah Sausage from my head and then test my bloodsugar.

Siblings?
But of course.  Older brother, younger sister.

What is the best thing about your job? 
That I get to write for a living.  And it doesn’t involve insurance in the least bit.   

Have you ever gone to therapy?  Once, after my parents divorced.  It didn’t do much for me but I was emotionally unreachable at the time. 

If you could have one super power what would it be? 
To have three more super powers. 

Do you own any furniture from Ikea?
The chaos of IKEA has been ferreted out by Mr. Sparling and me.  Half of our living room is furnished with IKEA stuff we’ve built ourselves using dowels and that wild, L-shaped screw thing they give you.  I’ve never been so horrified and delighted at the same time as when I realized that over $500 worth of Ikea stuff fit into a VW Jetta.

Have you ever gone camping? 
Yes.  Many, many times.  I don’t fancy myself a woman of the woods, but I “roughed it” and have been known to pee behind trees on occasion.  (I think I may have just crossed the liCiao.ne into Too Much Information Land.)

Gas prices! First thought?
A vespa. 

Your favorite cartoon character? Slowpoke Rodriguez.  Speedy may have received more press, but SlowPoke was just so sleepy and slow ... he makes me laugh every time.

What was your first car?  A 1984 Volvo DL with no horn, windows that fell into the doorframe everytime I rolled them down, and started in accordance with it’s German whims.  My brother left it behind when he went to college and I snapped it up when I turned 16.

Do you think marriage is an outdated ritual?  
No.  But it isn’t the only benchmark for a committed relationship.

The Cosby Show or the Simpsons?   The Simpsons.  All the way.  Comic Book Guy stands guard on my bookshelf at work as we speak.  He’s the gardener here at dLife. 

Do you go to church? 
No.  Do I have to in order to affirm my faith?

What famous person would you like to have dinner with? 
Bono.  Or Larry Bird.  (Are there any surprises anymore?)

What errand/chore do you despise?  
The dishes.  They are disgusting.  Once food is done being eaten, I immediately consider it “trash.”  And who wants to scrub trash off their dinner plates?  Horrendous.  I do, however, love washing laundry.  Goes in dirty, comes out clean.  I love that system.  And I could sniff dryer sheets all day long.  They’re like crack for me.

First thought when the alarm went off this morning? 
"Why is there a little gray tail in my ear?"

Last time you puked from drinking? 
 
Come on ... my mother reads this blog.  (This morning.  Nah, just kidding.  Yesterday morning.)

What is your heritage?   Irish, English, and Italian.  I’m a tea-drinking, hot-tempered pitbull who should be able to cook but is dreadfully deficient in that arena.

Favorite flower? 
The ones from Chris.  From roses for Valentines’ Day to a bouquet of daisies he grabbed while grocery shopping, I love them all.

Disney or Warner Bros?  They’re all mildly amusing but if I see one more grown woman wearing a jean jacket with Tweety Bird embroidered on it, I may lose my mind.

What is your best childhood memory? 
Riding the carousel every summer in Watch Hill.

Your favorite potato chip? 
I don’t like potato chips.  But I love Sherbet Cyclone popsicles.  I haven’t been able to find them in about three years.  If you know of a place where I can purchase Sherbet Cyclones, please disclose your source.  I seriously would drive across states to score a box.  But then I’d have to eat them all in one sitting because otherwise they would melt.  That’s the price I’m willing to pay.

What is your favorite candy? 
Gummy peaches.  The first three taste so delicious, but then you have to quit because you’re either going to end up ridiculously high or sick to your stomach.  Still, those first three are money.

Do you burn or tan? 
I tan to golden brown perfection.  I am currently missing my summer glow at the moment... looking rather pasty these days.

Astrological sign? 
Aquarius.

Do you own a gun? 
No way.  But I do have a baseball bat under the bed, just in case I want to play homerun derby in the middle of the night.

What do you think of hot dogs? 
They can be kind of pushy.

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September 26, 2006

No title.

My eyes were wide, wide open and my pupils were dilating further by the second.

It’s strange, sitting there as the dilation solution starts to affect your eyes.  Things start to look a bit wavier and the light seems brighter.  Then it’s almost too bright to focus and you ask them to turn off the fluorescents above you.

“No problem.  Now let’s talk about your diabetes.”

“Yes, I’m a type one.  Since 1986.  I just marked my 20th year a few weeks ago.  …  I’m trying to get it under 7%, yeah.  No complications.  I do take Altace for high blood pressure, though. … yeah, it’s working okay, I think.  How many times?  Um, I test about twelve times per day, on average.  … Yeah, it makes me anxious not to know what my bloodsugar is.  I did have a  cotton wool spot about a year and a half ago, sort of prompted the whole Altace thing.  It was gone as of September 2005, though.  I’m feeling pretty good.  I exercise a lot.”

He shines the light in my eyes.  Looks at me with that weird miner cap with the light on it. 

“Look over my shoulder… okay … at my left ear … okay …”

The visit goes on and my eyes are wide, wide open. 

“Left eye looks good, kiddo.  You work hard to take care of yourself, don’t you?”  The light shines brightly in my face and I wince a little bit.

“I do.  I do my best.”

“Right eye has that little cotton spot and a very, very small hemorrhage … two very small hemorrhages.  Nothing to worry about, though.  They’re so small.  So over at dLife, what exactly do you do?...”

And I start to cry.  Not big, sobbing, aching tears but the ones that just spill out and you can’t stop them and they burn so hot on your cheeks. 

“Bit leaky there, eh?  Those eye drops make people react differently.  I’ll grab you a tissue.”

Blot at my eyes.  My eyes. 

“So, nothing to worry about.  I wish every patient I saw who had been diabetic for 20 years was as fastidious as you!  Your eyes look great.  Nothing to worry about.”

“The spots, though?  The hemorrhage?  What do I do about that?”

“Keep doing what you’re doing, Ms. Morrone.  You are testing often, eating very well, exercising more than most patients I see.  You are doing a fine job.  Twenty years is a long time with this and you are doing just fine.”

My face is so streaked with tears but it’s okay because the lights are still dimmed and he can’t see me clearly.  I can’t see anything clearly.

“Can I do anything differently?  I want those spots to go away.”

“Well, see how tight you can run your sugars.  And maybe increase that blood pressure medication, because a higher BP doesn’t help.  But just stay on top of things and you’ll be just fine. This is nothing to worry about.  You're doing a fine job.”  He snapped my chart shut.  “Just visit the girls at the front desk and they’ll set up your six month follow up.”

I work hard at this.  Harder than I’ve ever worked at anything before.  I devote so much of my time to trying to monitor my diabetes that sometimes it makes me ache.  I’m scared that it’s never enough, that no matter what I do, it’s won’t ever be enough to keep me safe.  Monitoring bloodsugars, seeing the best doctors, eating a very healthy meal plan, exercising diligently, keeping myself as educated as possible – and it isn’t enough.

People tell me that they wouldn’t know I was diabetic by looking at me.  And now that secret hides in my eyes and I wonder if people know. 

I’m scared.  And I can’t help but blame myself a little bit.  There’s so much guilt with this disease sometimes that it suffocates me. 

I thought about not writing about this on the blog because I’m scared to see it actually written down.  I’m not sure if I’m ready to really face how scared I am of this sometimes.  And I know that it’s just a little smudge in my eye and it may correct itself and all I have to do is work harder, but to have someone regard it almost as what is expected to happen to me … I don’t want what is expected.  I want to defy expectations and have my doctors say, “Wow!  Fifty-three years with diabetes and you are in terrific condition!  Wouldn’t know by looking at you.”  My stomach is in knots at the thought that I’m 27 years old and I’m forced to face more of my journey as a diabetic.  The doctor said there’s nothing to worry about.  My family says it will be okay.  My boyfriend says he loves me today and will love me 50 years from today, regardless of what happens.  I don’t feel sick.  I hardly ever feel sick.  But will it get me?  Will it change the course of my life and make me sick?  Will I ever feel safe or am I always waiting … waiting for that next bit of dodgy news, that sharp poke of a complication, that fear making my heart it’s home. 

I'll keep trying - I'll always try - and tomorrow won't feel as scary.  But today does.  And so did yesterday.

My eyes are wide, wide open and I’m scared to look at myself.  I don’t want to change.  I don’t want this.

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September 11, 2006

Twenty.

Me as a wee little lass.Twenty years.

I thought I would feel this epiphany, this moment of clarity, a feeling of pride and accomplishment that I have lived such  a normal life with diabetes.  That I would have sage words of wisdom to impart.  Some tips and tricks, maybe.  Advice.  Something I could look back on in another twenty years and nod my head in agreement with.

Twenty years of insulin. Of blood sugar tests.  Of diet plans and food exchanges and carb counting and ratios.  Twenty years of my mother worrying.  Of doctor appointments.  Of explaining the disease to new bosses, new friends, new lovers.  Of meters and needles and glucose tabs.  Of highs and ketones, of lows and juice.

I was just a little kid when I was diagnosed.  My mother and father were strong for me then.  Now, I am all of my twenty-seven years and strong for myself, leaning on my friends and family and support systems when I need help.  But I don't have any words of advice.  I'm not an expert.  I deal with this the best I can.  There are days when I feel confident and in control.  There are others when I'm not sure which way the world is spinning.  Just like you. Just like everyone.

Twenty years ago today, I was diagnosed with diabetes.  Today feels good.  I feel no different from yesterday.

Here's to tomorrow being just the same.

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August 22, 2006

Superfriends, Take Two.

A while back,  The Anonymous Lurker Mom posted an open question in the comment section of SUM.  The online community responded with the compassion, resourcefulness, and honesty we're known for. 

There's now another de-lurker with a question: 

"Hi,
I'm a long-time lurker and new-time pumper. Actually, infant pumper. As in, one week (I’ve been diabetic for 15 years). I have a couple of questions and I’d appreciate practical advice.

1. How long do you actually leave your site in? If you leave it in longer than 3 days and you run out of insulin, do you just change/refill the reservoir without changing the infusion set?

2. I think I remember reading that you’ve used pen cartridges to refill a reservoir? I tried unsuccessfully to do that and then gave up because I didn’t want to waste any more insulin. But I also don’t want to waste my leftover cartridges.

Maybe you could do a post about things you wish you had known or had been told when you first started pumping? Not that you need ideas. I don’t have any diabetic friends, but I really enjoy reading your blog and the blogs that I found through Six Until Me. There is always something there that I can relate to. Superfriends

Thanks!
Em"

This is "Em" and she's a self-proclaimed pumping infant, having just started on her insulin pump this past week.  Looks like she's in hot pursuit of the real life, everyday bits of insulin pumping, from finagling an extra day on the infusion set to making the most of her insulin cartridges.  She's looking for practical advice.  And we're a veritable treasure trove here in the blogosphere. 

This is what we're here for, F.R.'s.  Let's help our newly de-lurked, infant pumping friend.

Capes en route.

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August 04, 2006

Paper Cranes

Last week, I had a pretty sneaky low pounce on me while I was on the treadmill.  Readings have been steadily improving but aren’t back on track yet.  So I’m erring on the side of caution as much as possible.  This is resulting in many “dead test strips.”

My initial meter reading when I started my workout was 170 mg/dl.  The pump was stashed in my purse and I had a bottle of juice and my kit on the treadmill with me.  (Not running beside me, mind you, but in the little holder compartments.)  Fifteen minutes into my workout, I was 100 mg/dl.  That’s quite a drop.  Sip the juice, keep going.  At the thirty minute mark:  84 mg/dl.  Hmmm.  I’d rather finish my workout at 200 mg/dl then have to stop because of a low, so I finish the juice off.  Forty minutes:  113 mg/dl.  Spot on.  No problems.  Fifty-three minute mark … all of a sudden sweating like a maniac.  I was reading the closed-captioning on the TV screen just a few minutes earlier, but now the words are dancing along the bottom of the screen.  Headache.

We know where this is going.

Turn off the treadmill.  As the machine stops scrolling back, I prick my fingertip.  51 mg/dl.  Damn it.  113 mg/dl only thirteen minutes earlier.

Reaching into my kit, I grab the only money I have on me:  a one and a ten dollar bill.  Walking determinedly towards the juice machine, I notice that juice is two dollars in this (god-forsakenly expensive) Connecticut town.

“Excuse me.  Can you please break a ten?”

“Sure thing.  You want me to break it like I’m a ninja?  Put my hand straight through it?”  The guy behind the counter grins and means so well, making jokes with me, the New Girl at the Gym.

“It’s okay.  Just ones are fine.”

“I can make it into a paper crane.  Watch my paper crane.”  He starts to fold.  I lean on the countertop.  This will not be a repeat performance of the Showcase Cinemas episode.

The money shift under his hand and I watch as wings take shape.  I’m running out of time to wait.

“Listen, I’m a diabetic and I’m having a low bloodsugar reaction.  I need to buy some juice.  It’s okay.  Just please give me a dollar and I’ll come back for the rest of my change.”  I smile.  I’m not a completely hypoglycemic mess so it’s easier to be in control this time.

“Sorry.  Here.  Here you go.”  He casts his eyes down, hands me a five and five ones and I wander off to the juice machine.

I drain half of the bottle.  It’s going to be just fine.  A few minutes pass.  I test.  94 mg/dl.  Back on the climb.

I walk back over to the counter, where the man behind the counter is deliberately not looking at me.
“I’m sorry if I was short with you.  I just needed a hand.”

He didn’t look at me.Paper Cranes

“I appreciate your help, you know.”  I start to walk away from the counter.

“Hey.”

I turn around.

He gently places a paper crane made from a post-it note on the countertop.  Wings flutter from the ceiling fans.

“My cousin has diabetes.”

Continue reading "Paper Cranes" »

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July 19, 2006

HR 810 - Stem Cell Research

You are reading this blog.  That means that you are affected in some way by diabetes. 

It may be your children.  It may be your parents or your grandparents.  It may be the nice kid you sit next to on the subway during the morning commute.  It may be the author of the book you just read.  It may be the CEO of your company.  It may be your partner.  

It may be you.

Every minute of every day.  That’s how often diabetes affects life.  Every second is kissed by this condition.  While we all live every day with this disease, it is a tough journey sometimes.  So much effort to live normal, healthy lives.  And we do our best.  Our very best.  Taking each step with courage and determination and the knowledge that a cure could be within our lifetime.My 2006 medical bills as of July

Our lives are full.  We have successes and failures.  We have careers and make contributions to our society.  We are strong sons and daughters, mothers and fathers.  Our lives will not suffer the consequences of this condition without a fight.

And we’ll keep fighting. 

For at least another five years.

Because with one penstroke, Mr. George W. Bush pushed the cure for diabetes, and for many other diseases, just out of reach again.  He said the bill would have crossed a line and “once crossed, we would find it impossible to turn back.”  

I am not advocating the killing of a child.  I’m talking about saving one. 

And I don’t want to turn back.  I’m tired of the “Five More Years Promise.”  The possibility of a cure is a bitter taste I wake up with in my mouth.  I want my chance.  I am twenty-seven years old and I want my chance to experience my life without diabetes.  Diabetes will never quiet my ambition or temper my dreams, but it has the potential to shorten my life.  This September will mark my twentieth year with diabetes and I want nothing more than to feel strong and hopeful for my healthy future.

“In our zeal for new treatments and cures, America must never abandon our fundamental morals,” is the response he gave.  Our fundamental morals?  Protecting human life?

Mr. Bush, what about our lives?

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June 08, 2006

MacGyver Morrone.

Little black dressIt was short.  It was low cut.  It was ever-so slightly slinky.

It was the opening gala for the Newport Film Festival and the dress code was "a little bit dressy."

Seriously, when can you go wrong with a little black dress?  It always looks classy and simple and suitable for almost every occasion.  I had a beautiful one from Ann Taylor in the closet.  Just grab a pair of black heels, some sparkly (fake) jewelry, and slip into that dress.  No problem.

... No problem until I went to slip into my Something Most Comfortable: namely, my pump. 

Most often, I don't have problems wearing a dress and the pump at the same time.  Usually I tuck the pump safely between my ... in my bra and that's the end of it.  Or I utilize the thigh thingie that straps around my leg and has a little sleeve for the pump. 

This dress, however, was too low cut to hide my pump discreetly in my bra and the damn thigh holster wasn't cutting it.  (I think the velcro in that foolish thing is clogged up and is un-velcro-y now.  Damn it.) 

I debated forging forward with the bra attempt and started planning answers:  "Yes, it's very nice to meet you.  I loved your film.  Um, yes.  I was born half robot but I usually don't speak of that to strangers," or "I'm actually taping this conversation with my boobs," or "I, too, enjoy injecting hormones.  Seriously.  I'm hooked."

I couldn't do that.  Besides, the little peeking loop of tubing clashed with my necklace.

I tried to set the pump in the waistband of my underwear, but that proved to be both nearly impossible and completely visible under the form fitting bodice of the dress. 

Damn it, damn it.

I had no long acting insulin at the house.  I didn't want to disconnect and be forced to test and piggy-back boluses all night long.  I wanted to wear the pump and get on with it.

The Solution?:  I rigged up a little contraption using the clip on straps to a convertible bra (thank you, Oh Secrets of Victoria), the case from the thigh holster, and the tiniest piece of duct tape.

The pump stayed put.  The film party patrons were none the wiser.

And MacGyver's got nothing on me.

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May 26, 2006

The Boy at the Health Fair

I'd guess about ten years old.  Spikey blonde hair, pale blue eyes, chubby little kid face.

His mother stopped by the table we were manning at the School Health Fair, mussing with the pamphlets strewn about the blue plastic tablecloth.  The tri-fold cardboard display announced "Juvenile Diabetes Research Foundation" in bright blue letters.  Myself and another volunteer from the RI JDRF stood vigil at the table, handing out trinkets and informational packets, answering questions, and enjoying the sights.

"Hey buddy.  Would you like a t-shirt?"  My fellow volunteer leaned in towards the little blonde boy.

"Sure.  Thanks."  Shy blue eyes.

Turning to the mother, my partner asked, "Does anyone in your family have diabetes?"

She waved a green sweatshirt clad sleeve at her son.  "Yeah!  He does!  He has diabetes."

He looked at the floor and contemplated his untied sneaker. 

His mother laughed loudly and clapped him on the back.  "Some days he talks about it and some days he doesn't.  Today he just ain't talking!"  She picked up an issue of Countdown Magazine and flipped through the pages.

"Here's your t-shirt."  Pale blue eyes met my own.  "I have diabetes, too, you know."Lost in the Crowd

"Really?"

"Yeah.  I have an insulin pump."  I pointed to the pump clipped inside the pocket of my khaki skirt.  "I've had diabetes since I was about six."

"I've had it since I was seven."  He smiled and fingered the plastic sleeve around the blue JDRF bracelet.  "It's okay... so you have it, too."  He looked at all the other volunteers at the other booths. 

After a beat:  " You look just like the rest of them."

I stood there after he and his mother walked away, toting plastic bags filled with health fair goodies and JDRF magnets and pamphlets on bloodsugar management.   His blonde head blended in with those of the other kids until I couldn't find him in the crowd anymore.

He looked just like the rest of them.

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May 04, 2006

Happy First Birthday, Six Until Me.

I existed for six year before diabetes came into my life.   I don’t remember much before I was diagnosed – all of my memories have been touched in some way by this disease.  I went to every birthday party as a kid with my trusted stuffed animal and my black zipper case blood testing kit by my side.  I remember every day in elementary school starting with my mother waking me up and testing my bloodsugar.  I remember injections in the kitchen before we had summer dinners on the back deck.

It’s not sad that things are this way.  It’s just how life is.

What is sad is that for a period of time during college and just afterwards, I felt like I was the only diabetic for miles.  I knew there were others out there, thanks to Clara Barton Camp, but I was ten plus years away from camp and hadn’t talked with another diabetic in as long as I could remember. 

In my apartment on a sunny May afternoon, I sat at my desk next to the bedroom window.  Switched on the computer.  Googled “diabetes.”

The page filled with a litany of links, urging me to take fastidious care of my feet, be sure to schedule annual eye exams, and discussing the benefits of testing my bloodsugar at least four times per day.  Organizations like the American Diabetes Association and the Juvenile Diabetes Research Foundation cropped up, along with countless medical and research articles.

I have had diabetes for most of my life.  I knew the essentials and then some.  It wasn’t that this information was useless to me, but it was mostly clinical and statistical and besides, who were these people writing this stuff? 

Where are the people with diabetes?  The ones who have it?  The ones who wake up every morning and deal with the daily maintenance?  The ones who have glove compartments filled with Smarties candies and caches of used test strips in the corner of every room?  The ones who don’t view juice as nutritional sustenance but instead a life-saving medical treatment?  The ones who know what it’s like to feel overwhelmed with the daily tasks? 

Elated at a bloodsugar of 112 md/gl after eating Chinese food?  

Ecstatic at an A1c drop of 1 percent?

These people were writing blogs.  And there were a handful of d-bloggers when I first started searching.  Tek.  Violet.  Kathleen.  Amy.  Scott.  I’m sure there were a few others, but these were the first that I found.  Reading their experiences and feeling an instant sense of comfort and community with these wonderful people, I knew I wanted to do what they were doing.  I wanted to blog, too.

A year ago today, I started “Six Until Me.”  One fledgling post, perfectly blended with the hope that someone would find me and the fear that someone would find me.  One post that ushered me into the blogging community.  One post that confirmed for me, almost instantly, that I wasn’t alone. 

In self-celebration of my one year anniversary, I’m switching over to my own dot com.  Six Until Me.Com will be the link for this blog going forward.   The blogspot address will remain active for the archives.  If you have my site linked from your own, I would appreciate it if you would update your links!

Thank you.  To each reader.  To each commenter.  To each quiet lurker.  To each fellow d-blogger.  To each person who has changed me.  To each person who has emailed me and made me smile. Thank you to my wonderful family.  And my boyfriend, who inspires me. 

Thanks to each and every one of you. 

Now when I Google “diabetes blogs,” there are so many voices out there to be heard.  We most certainly are not alone.

Continue reading "Happy First Birthday, Six Until Me." »

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