Thanks to the move we have on tap for tomorrow and the fact that we're up to our eyeballs in packing tape and cardboard boxes (and also that we've accidentally packed Siah into three boxes now ... that cat had better be careful or she'll end up in the moving van), now is a great time for a guest post from a fellow diabetes blogger. 

This morning's post comes from Jacquie of Typical Type 1, and I'm very honored to be sharing her writing talent here on SUM!

I swear I wasn't trying to get out of jury duty.

See, I was in the juror pool, answering questions about my job, my home ownership status and the last parking ticket I'd received, when the judge asked one question of all of us: "Is there anything we should know about that may impede your ability to serve as a juror in this trial?"

Sheepishly, I raised my hand. "I have Type 1 diabetes," I admitted. "It's not a huge deal, but there may be a few minutes when I'm not able to pay complete attention. I may have to eat something in the middle of the trial."

For a second, no one said anything. Then the judge spoke up: "Hundreds of thousands of Americans have diabetes, and they're able to perform everyday tasks like jury duty. If you need to eat, just let us know, and we'll take a recess."

I nodded, and accepted my fate as a diabetic juror. (Also, I felt like kind of a dumb ass for even saying anything.) While I sat there and listened to the details of the trial and the life stories of my fellow jurors, the weird familiarity of the situation started to sink in. Of course I know that hundreds of thousands of Americans live with diabetes, Your Honor. Of course we're all able to perform everyday tasks with relative ease. Of course I'm a normal person – except for the times when I'm not. Sometimes I have to excuse myself from a meeting or a bridal shower to shotgun a juice box. Sometimes I wear a mechanical pancreas in my cleavage. Sometimes I say things on the phone with insurance company customer service representatives that I would never say to a person in real life. But I'd be darned if some innocent citizen was going to go to jail because I'd miscalculated my breakfast bolus and spaced out on the defense's arguments.

This was a perfect example of the proverbial tightrope we all walk as people with diabetes. Lean too far to one side, and you're Sick. Fragile. Old before your time. Wilford Brimley's biggest fan, with a collection of pill organizers and sad story to tell anyone who asks you how your day is going. Teeter too far to the other side, and your friends, family members and co-workers begin to believe that your diabetes is no big deal, after all. They'll become convinced that your insulin pump does all the work for you, that diabetes is no more of an inconvenience than the task of flossing, that maybe if you just exercised more or laid off the Cinnamon Toast Crunch, your health problems would effectively disappear.

Before I started wearing my pump – and way before I started connecting with others in the diabetes online community – I treated my disease as an accessory. I wasn't embarrassed about it, but I wasn't exactly forthcoming, either. I gave myself injections in cars and at dinner tables the way other people apply lipstick. I kept up with everything, but I didn't obsess over it. Every once in a while, a roommate would complain about my trail of test strips, or someone would shoot me a look while I tested in public, and I would retreat into a more secretive or jocular mode, shrugging off diabetes like it was a case of the sniffles or pesky rash.
Now that I'm in my thirties, I feel like it's a tougher performance than ever. I don't want anyone to assume that I need to eat lunch just because it's noon, but I also want people to know that when I need to take a break from normal life to treat a low, I'm not screwing around. I really do feel like crap, and I really am in a potentially scary situation. Forty-five minutes later, however, I feel as average as they come. (Assuming I haven't overtreated, of course, but that's an entirely different kettle of Swedish Fish.)

I suppose the balance between "sick” and "normal" is just as difficult to achieve as a consistent blood sugar level that's not too high or too low. The story of Type 1 diabetes – and how any person lives with a chronic illness – is a complicated and nuanced one, and it takes decades to tell.

Am I a healthy person who happens to have diabetes, or a diabetic person who happens to have a pretty healthy life? For this girl, the jury's still out.

*   *   *

Thanks, Jacquie!  And for you guys, what's your take on that last bit?  Are you a healthy person who has diabetes, or a diabetic person who has their health?  

Posted by Kerri Morrone Sparling at 09:41 AM | Permalink | Comments (38) | TrackBacks (0)

Steve at Without Envy broke my heart by answering, by way of poetry, the letters I wrote to BSparl while she was growing inside of me.  I'm very honored to be sharing his words with you guys today, as I read them to myself over and over again in the hospital, waiting patiently for my daughter to arrive.

*   *   *

The Child's Reply to Her Mother

Dear Mommy,

Were the world imperfect and only so cozy
compared to your big pregnant belly,
I would wish for these moments to last,
To be as close as I am to you now.

But Sound lends music to eager ears;
Thoughts turn from angst and guiltless fears;
And Galileo falls quiet;
This child inside you stirs.

Old Winter has gone, and blossoming flowers,
Bibs, small dresses and candy pacifiers, are sprung in baby showers;
While monitors, cultures, and blood pressure cuffs,
Hold but a whisper’s attention.

Fluids and proteins, and peeing in hats,
Headaches, fat feet and carpel tunnel wraps,
Will soon give way to the soft touch of your hand;
This child inside you stirs.

But could nature embrace, and wrap tenderly
The same tender love you’ve woven for me,
In your arms do I wish for these moments to last,
To be as close as I am to you now.

Love,
Baby

Written by Steve, who blogs at Without Envy.  Please visit his site and appreciate his fine writing!

Posted by Kerri Morrone Sparling at 08:39 AM | Permalink | Comments (5) | TrackBacks (0)

The Diabetes Sisters Weekend for Women took place a few weeks ago, and as much as I wish I could have been there (something about a new baby and whatnot), I am so excited to be posting this recap from Sarah Condon, who was there for the whole thing! 

*   *   *

On Saturday, I woke up at 230am, hours before my flight took off. This was the weekend that my entire life would be reevaluated, redone, re-inspired. I arrived at Detroit Metro Airport around 4am expecting TSA to hassle me about my insulin pump (now that its tubeless) and all of my supplies that I needed with me in case of an emergency (insulin pens, pen needles, a plethora of new pods- hey I’m clumsy and I’ve managed to rip a pod off in some of the weirdest ways). I reviewed the TSA website prior to this weekend to make sure I was packing everything correctly so I knew that I had to have my shoes off (eww!) and my liquids and laptop pulled out, no big deal. I also pulled out my bag of diabetic goodies too, just in case. After pulling everything out and trying to juggle my purse, backpack, laptop, bag of shampoo and the like, and the bag of goodies, the TSA agent was not what I expected. They were friendly and walked me right through security without a second glance (well almost, the guy behind the x-ray machine smirked at me. He probably was trying not to laugh at me since I packed everything into baggies, even my underwear, and I tight rolled my clothes into little logs). I sat at the gate for almost 2 hours, occasionally walking around. I knew this trip was of great value monetarily but I had no clue how much I’d value every second of this trip …



I touched down in Charlotte, North Carolina, and race walked to the opposite side of the airport (do you know how huge that airport is? Or maybe it just seemed abnormally large because I was trying to balance a backpack and purse while trying to keep my dress from riding up and race walking in my sparkly heels. Note to self: sparkly heels are amazing. Not so amazing when traveling.). Once I’ve arrived at the gate and boarded the plane, I was filled with anxiety. I was alone in a state that I’ve never been in before and I knew no one (what if something happened to me, like a fierce low?). The closer I got to my destination, the more the anxiety turned into excitement. I was on my way to meeting women who are just like me, diabetic or persons with diabetes- depending on their point of view (I personally don’t care, but I’ve always said that I’m diabetic. While diabetes doesn’t define me, it is a very large part of me and its something I fight for, fight against, and fight with). Some time passes and I get into my rental car (a Yaris- really small and adult word for “crappy” car) and head toward the hotel.

All of the 20 minutes of driving and getting lost was exasperated by a pending low- I say pending because it wasn’t yet confirmed by a glucose test but I could feel it full blast coming on and coming on with a vengeance… first, aggravation while driving… I know I’m from out of town, but really, you all drive like idiots on I-40. Or maybe it was me driving like an idiot? Then the confusion sets in… I’m going even lower and this confusion had made me (yes made me) read the directions from MapQuest wrong. While looking for a gas station (there are none, btw) I pull out a roll of glucose tabs and quickly chew a few. Getting really frustrated, aggravated, confused, and now weak, I pull over and activate the GPS program on my phone and quickly discover I’m two miles away. SUCCESS AND RELIEF!!!


The conference was starting to get underway (it was around 5pm at this point) and just thinking about it makes my eyes water (you’ll see that the smallest things make my eyes water... cute babies, love, sunshine, being alive, etc). There were 100 of us, women with diabetes. Every woman had a type of diabetes but I’ve met more Type 1’s here than I’ve met in my entire diabetic life (persons with diabetes life?) which is almost 14 years. We’ve talked about where we were from (I was the only one from Michigan, as I expected) and how long we’ve been diabetic (here’s that conundrum again) and how excited we were to be surrounded with people like us, to be away from the kids, to be away from the significant others, to be away from the food police, to let our hair down and just be…. Us. It was here that I’ve met some of the most amazing women, the most inspiring women. I’ve felt so alone my entire life and here I am, it was the complete opposite of what I’ve felt back home. Guest speakers entertained, stories were shared, icebreakers were agreed upon, and we all laughed and giggled our way through the orange soul train. DiabetesSisters… We were sisters, we were sisters with diabetes. One big family full of battle wounds, success stories, frustrations, and celebrations.

I overslept for the Belly Dancing class that I wanted to go to, but the events from the previous night were well worth it. During breakfast Nicole Johnson spoke about her life with diabetes and her determination to not let diabetes stop her. This woman was my hero growing up as a pre-teen and then teenager with diabetes. She was young, she was pretty, and she was Miss America 1999... her life seemed pretty amazing and she proved to me that I could do anything that I wanted to do; after all, diabetes didn’t stop her so why should it stop me? Having her tell us about her life growing up with diabetes made her even more of an inspiration- while her life seemed amazing, she had the same daily struggles as me (as well as the rest of the women there). At the conclusion of her speech we all got the chance to meet her and take pictures with her. The afternoon discussion panels were interesting and it was astonishing to know that I wasn’t the only one dealing with the matters discussed. Once again, I was no longer alone.

I left early because my flight left at 7pm but I offered to drive another attendee to the airport too and her flight left a bit earlier than mine... and this time TSA did search me and question me. My bags were scanned with no issue but then the receiving agent told me she wanted to test my bag for explosives. I was trying not to laugh at her, I know she is doing her job, but it was just the irony of the situation. I don’t get searched in Detroit but I get searched on the way back ... just plain silly. After giving me the all clear to continue, I gather my items and turn to walk to the gates. This is when things get slightly intense... she asks me “what is on the back of your arm?” (I was wearing a sundress). I politely inform her it’s an insulin pump. She looks confused and asks me what its purpose was.

 Trying to be polite, I inform her I’m diabetic and instead of taking shots all the time, this injects insulin into me. She starts to move her arm as to touch my pod (I’m using the Omnipod) and now I’m losing my politeness, “I prefer that you do not touch my insulin pump, you wouldn’t want me touching your arm, or your behind. This is like an artificial pancreas, like another part of my body”. She gives me this blank look, I knew I confused her and honestly, I did it on purpose so she would get a supervisor. She looked at her supervisor who was sitting just a few feet away and heard everything and he smiled and asked me how long I’ve been diabetic (which I replied “around 14 years”), he smiled proudly at me (a big full teeth smile with a glimmer in his eye, which may have been a tear), bowed his head and told me to have a safe trip and a blessed life and to keep doing what I’m doing because I’m doing something right. It was cool to have a complete stranger react that way. Once I got past security and got familiar with where my gate was located, I decided to walk around; it’s good for the blood sugars. I hear my name out of nowhere so I turn around and walking towards me is B, the sister I drove to the airport. We walk around some more, get a quick dinner, and continue to chit chat before parting ways again. As I continued on my journey home, I started to get all teary eyed; being surrounded by some of the strongest and bravest women was beyond inspiring and made me reevaluate how I care for myself and my diabetes. I’ve never felt such support before and to look back on it makes me get all teary eyed all over again.

Diabetes doesn’t define me but it is a part of me....
And it’s a key to the door to an amazing sisterhood.

*   *   *

Sarah has had type 1 for 14 years (no complications), is an active breakdancer in Metro Detroit, and spends weekends with her boyfriend and cable stealing cat.  (Editor's Note:  Her cat doesn't steal cable.  Her cat stole the camera upload cable.  But her bio made me laugh out loud at the thought of a cat stealing television cable.)

Posted by Kerri Morrone Sparling at 08:56 AM | Permalink | Comments (12) | TrackBacks (0)

I think "Instructions Not Included" is a very cool name for a diabetes blog (or, as I'm quickly learning, a mommy blog).  I'm excited to have Becky from Instructions Not Included stepping in today here on SUM to guest blog about all the freaking numbers.  NUMBERS!  People with diabetes know the drill - there are so many numbers to juggle throughout the day that if you aren't a math major, it can be pretty daunting.  Becky acknowledges that, but she also gives a beautiful twist at the end that I just loved.

Thanks for posting today, Becky, and be sure to check out her blog!

*   *   *

I am twenty five years old. I stand at five foot and a debatable number of inches. My last HbA1c was 6.2%. Cholesterol was 3.4. By the end of today, I will have done approximately 1340 injections. I will have tested my blood glucose levels over 2555 times, testing seven times a day if everything goes well. I have filled and disposed of four sharps bins, two are sitting filled up under my coffee table, and I'm working on my seventh.  Today is my 365th official day of having Type 1 diabetes, which makes me a whole year old. Time flies.

Numbers are fascinating. They really are. I'm always keen to look at the numbers on my test results - it's in my nature to want to understand what's going on. I think there gets to a point though, and it happened to me recently, when you just want to yell 'stop!', because there are just too many numbers. It reaches overload, and you can start to feel as though you're either drowning in them, or it's all there is to you.  

It's all about the numbers. It's this amount of mmol/l. It's that many grams of carb. This percent and that percent. Turning this into a fraction, working out the carb value. Dividing and multiplying. Adding and subtracting. Diabetes has done so much more for my maths skills than watching Countdown ever did when I was trying to pass my GCSE.

I've always found it strangely reassuring that though I rarely see my consultant, he remembers where I work, knows that I take ballroom dancing classes, and remembers my housemate. But yet I know that it's my numbers he's really interested in.  Unless I say something to concern him, it's what's on the paper that matters.

I did a bit of research, based off a hazy memory I had of some figures of what the human body consists of. According to the U.S. Bureau of Chemistry and Soils, the body is made up primarily of oxygen, which clocks up at 65%, followed by carbon (18%), hydrogen (10%), nitrogen (3%), calcium (1.5%) and phosphorus (1.0%). Then there is potassium, sulfur, sodium and magnesium, copper, zinc, selenium, molybdenum, fluorine, chlorine, iodine, manganese, colbalt, and iron, all at under 1%. Finally, trace amounts of lithium, strontium, aluminium, silicon, lead, vanadium, arsenic and bromine. And if you made it through that, I'm seriously impressed.

So that's what makes up a human body. But is it what makes up a human being? Sure, I'm 65% oxygen and 18% carbon, as well as all the rest, but that's not what makes me me.  When I was talking to Andrew (my housemate) about this post, and that I was researching what makes up a human body,  and he said something that really struck a chord:

The elemental form of almost anything, is almost worthless. Take a diamond, for instance – it's just a lump of carbon. Same thing we stick in our pencils. Change its chemical composition, and it's worth far more.

That's very much what I'm trying to say.  I might have a HbA1c of 6.2%, but I also compulsively buy pyjamas, and have at least 11 pairs. I test at least seven times a day, but I also don't like to walk with someone on my left hand side (strange but true).  These are some of the things that make me who I am. Diabetes and all its related statistics doesn't define me. I'm sure that it's true of you as well.  So maybe every now and then, when we're swamped with all these numbers, it's a good moment to take a deep breath, and remember some of the things that make us a diamond rather than a heap of carbon.


Posted by Kerri Morrone Sparling at 09:19 AM | Permalink | Comments (10) | TrackBacks (0)

Mike Lawson offered to guest post, and I'm always one to encourage people to share their stories ... even when those stories hurt to share.  This afternoon, Mike shares a very tough experience with us, and one that I think anyone (diabetes notwithstanding) can relate to, on one level or another.  Thank you for sharing your story, Mike.

*   *   *

This is the one where I’m super-depressing.
 
My apologies to Kerri.  I was originally going to write a post for Six Until Me titled “Twitter Your Way To Better Blood Sugar,” and it was going to be awesome…but with some recent events in my life I couldn’t help but do a quick switcherroo.  So now you have the super-depressing story of how diabetes has negatively affected my love life:
 
There are a million articles on the web about how to support your loved ones living with diabetes.  You can find half a million articles on how diabetics can help their loved ones deal with this chronic illness.  I’m going out on a limb, but I think this may be the first blog post out there about how diabetes can ruin a relationship.
 
Last week I ended a relationship with my partner of three years.  And it sucks to say that my type 1 diabetes was a factor in the breakup.
 
Dan and I started dating back in 2007, and quickly hit it off.  We both have nerdy hobbies and love sitting around criticizing the television.  We both wear dorky glasses.  We frequently went out to dinner, or I’d cook for him.
 
What Dan didn’t know at the time was that I had a really nasty secret: I had absolutely no control over my blood sugars.
 
I was waiting out my health insurance’s stupid pre-existing condition penalty, and struggled to afford the basics for my diabetes management.  I wouldn’t test my blood unless I felt sick because when paying full price, those strips are more expensive than a strip of gold leaf.
 
I’d like to make villains out of the insurance companies, the government or other people…but the reality is that I dropped the ball on my own well-being.
 
During this time Dan tried to understand my Diabetes.  He has a problem-solvers brain, and hated not understanding why my glucose levels were high when all I ate was a pizza.  It’s sugar-free after all, right?  Ha!
 
About a year ago I was literally days away from the end of the pre-existing condition hold on my insurance when I started getting really sick.  I thought that I was facing a serious flu.  I had all of the normal and nasty flu-like symptoms…vomiting, aches, chills, and extreme tiredness.
 
Dan was super supportive…doing all of the things boyfriends do.  He got me crackers and medicine.  He came upstairs to refill my ice water.  And then I started having trouble breathing.  And I was hallucinating a little.  
 
Dan scooped me up and took me to the hospital.
 
“When was the last time you tested your blood sugar?” the nurse in the ICU asked me.
 
“Well it’s been a few days,” I said.
 
The nurses eyes got wide.  “You don’t test before each time you inject insulin?” she asked.
 
“Yes I do,” I said.  “That’s been a few days too.”  Actually closer to a month.
 
Ketoacidosis.  In basic terms, my body was completely deprived of all insulin.  This is potentially fatal.
 
I had to explain to the nurses and doctors about my pre-existing condition – which thankfully concluded one day before the hospital visit – and Dan sat by my side silently nodding as if he was an accomplice to all of this.
 
Dan cried in the hospital.  Scared as hell.  That problem-solver that I told you about had no control over this one.
 
Since the hospital visit a year ago, we had ups and we had downs.  I started seeing a wonderful doctor that put me on an ultra-low carb diet that made my numbers close to perfect.
 
What non-diabetics sometimes fail to understand is how persistent this illness is.  Even (God forgive the analogy please) cancer has an end date.  It gets better or it doesn’t.  And while I’m not wishing for cancer, I do think that perhaps Dan and I could have battled that one out a bit better because of the finality of it.
 
So with time, my doctor’s visits became more and more spread out.  I would cancel appointments because I hadn’t been testing and recording as regularly as I know my doctor would have wanted.  I started sneaking in more and more carbohydrates.
 
And the carbohydrates made my numbers higher, and I was afraid of what my a1c results would be.  Another canceled appointment.
 
I even lied to Dan about a canceled appointment.  “She said everything was fine,” I told him, unable to fess up to canceling another meeting with my doctor out of fear for the harsh words he might have.
 
There’s really no bad guy here.  Dan loved me and wanted me to be healthy so we could grow old together…with all four of our feet.  And I wasn’t a bad guy either.  When confronted I always told myself that I could handle this.  “Just give me one more week to start testing and recording my numbers, and then I’ll go to the doctor.”
 
And ultimately I failed.
 
I’m totally leaving some stuff out.  Dan didn’t break up with me because I can’t control my blood glucose levels.  That would be jerky.  And Dan is less than jerky.  But my diabetes (un)management was a contributing factor in our decision to break up.  It’s tough to worry about your own blood glucose levels … let alone your boyfriends.

Mike Lawson is a program director for a youth-serving non-profit organization in Tempe, Arizona.  He was diagnosed with Type II diabetes in 2005, and then was re-diagnosed with Type I diabetes in 2007.  At this rate, he should be diagnosed with a working pancreas any day now.  Find Mike on Twitter: @mrmikelawson or read his blog: WhatSomeWouldCallLies.com

Posted by Kerri Morrone Sparling at 06:30 PM | Permalink | Comments (31) | TrackBacks (0)

Holly is a sweetheart who is jumping into the diabetes blogosphere with her blog, Arnold and Me.  She says that she used to have a lot of conflicting emotions about diabetes, but she's no longer ashamed.  Check out her post below and then be sure to skip on over to her blog and welcome her to the crew!!

*   *   *

Hello, my name is Holly!  I am 25-years-old and I’m from Alabama.  I am married to the most wonderful, patient man I’ve ever known, Trey.  I am the pet momma to two cats (Charlie & Elvis) and one dog (Roscoe).  I love SEC football.  I work as an environmental engineer for NASA.  And I love the weather, especially thunderstorms, tornadoes, and hurricanes.  

Oh yeah, and I have diabetes.  

On December 11, 2006, I woke up in my local hospital’s intensive care unit after experiencing diabetic ketoacidosis.  My blood sugar was over 1400 at the time of my hospitalization.  That afternoon, I met my endocrinologist.  He told me that I was type 1 diabetic but it wasn’t my fault and I had done nothing wrong.  So, two weeks after my 22nd birthday, my life changed.  

For the first three years after my diagnosis, I was ashamed that I was diabetic.  I avoided testing in front of people, especially friends and family.  I would test and dose in restroom stalls when I was out in public.  I would always wear my pump inside a pocket or somewhere discreet.  Regardless of what my endocrinologist told me, I somehow felt this “thing” was my fault and I wanted to hide it.  

But now, I want to start a diabetes blog.  What changed?  Am I more open to this “thing?”  Am I less shy and private about it?  Hardly!  Then, why start a blog about one of the most personal areas of my life?

For starters, I am no longer ashamed to have diabetes.  I understand this was meant to be a part of my life and was written for me long before I was born.  However, there are some aspects about living with a disease that can only be fulfilled by sharing it with others:  

Accountability:  I don’t know why, but my numbers are always better when I write them down.  Regardless if I eat the same or work out the same, my diabetes is more in check when it’s logged.  I guess it’s kind of like when a trainer tells you “think about the muscle you’re using.”  When I think about my diabetes, the more in control it seems to be.  I’m hoping that with displaying my numbers and habits for anyone to see, my conscious will nag me to take better care of myself.  

Community:  The first type 1 diabetic that I met in real life was April (fellow d-blogger, Nerdy April, and space nerd).  We were working together at a summer camp for kids.  It had been less than six months since my diagnosis, and I guess I was still in shock.  When I told her I had just found out I was diabetic, she gave me a hug.  A hug.  From someone who understood.  NO!  She knew!  That was my turning point, I wanted more of that.  More people who felt the same way I did.  More people with this “thing.” 

Encouragement:  Let’s face it, we all have our highs and lows (pun intended) with diabetes.   And I’ll have my days where all I want to do is test on my middle finger and say, “F-U, diabetes!”  But sometimes we have our little victories.  Like finally getting a fasting BG below 130.  Or bringing my A1c down by 0.5%.  I want encouragement for all that and for when my husband and I want to have a baby (but not yet, Mom!).  And encouragement for when I want to ask my doctor for a CGM—and fighting the insurance company afterwards.  

For those of you who are experienced at this, what other reasons have you found a d-blog to be beneficial?  I’d like to know what I’m getting myself into.  =)

So, thanks to Kerri, for letting me make my first official d-blog post on SUM.  You can check out my blog at Arnold and Me.  I’ll start with the story of my diagnosis, which you can tell from my intro was very dramatic.  Then, some more non-D things about me.  

P.S.  I’m also a huge Twilight nerd.  Team Jacob! 

Posted by Kerri Morrone Sparling at 08:55 AM | Permalink | Comments (18) | TrackBacks (0)

About a month before my daughter was born, my friend Elizabeth became a mom.  Her baby girl joined her family through the miracle of adoption, instead of the c-section that brought BSparl roaring into our family, and both Elizabeth and I share the experience of first-time motherhood and type 1 diabetes. 

Her post, which I have the privilege of posting here on SUM today, echoes many of my own fears and thoughts.  I've had a few lows while watching BSparl, and the combination of panic, guilt, pride, and love is intensity defined.  Thank you, Elizabeth, for sharing your story here.

*   *   *

It was a bad one.
    
And of course I’ve had the bad ones before, plenty of times. Where you’re working so hard or playing so hard (or worst of all, sleeping so hard) that you don’t realize what’s happening with your body until figuring out the series of muscles you’d need to walk feels as complex as solving differential equations, while drunk. Course I’ve had the bad ones before and it’s annoying, sure, and somewhat scary but no big deal. Except that this time it happened while my daughter was screaming.
    
I need to ingrain this in my brain, like that canned airline speech about what to do when your oxygen mask drops. My oxygen mask had conked me square in the nose, but my instinct, of course, was to save my child first.
    
The back story is that Anna has a hard time pooping, something called dyschezia where she gets all confused and tenses up. (I know, right? Who knew some babies actually have to learn how? This is not one of those things the baby books tell you, perhaps to keep you from gouging out your eyes in despair over what’s to come. Imagine this, a prolonged high-pitched screaming and me cheering, You can do it, push, push, push!  It’s like Anna is giving birth to a poop.)
    
The only thing that helps somewhat is to pull her knees up to her chest (as one would if she were giving birth to an actual baby), to help her relax. Drop her knees and the screaming escalates. So there I was last week, standing over the changing table with my hands on Anna’s knees, Anna sobbing, me sobbing and not wanting to let go. Until I didn’t have a choice. It was chomp down glucose tabs or pass out, so…and thank God I had the presence of mind not to try and lift Anna from the table … I dropped her legs, and tried not to hear the screaming as I raced to the kitchen.
    
It was awful.
    
And when I became lucid enough to think through what had happened, it became even more awful. Anna’s only five weeks old now, so she’s not in danger of rolling herself off the changing table, but what happens in three months when I can’t leave her alone? Or what if I’m carrying her or walking her down a busy street in her stroller, and I go hypo without realizing how low I am? And then there’s a whole other set of worries, not as immediate but just as profound…Namely, what will my diabetes do to Anna in the long run?

   
I’m sure all d-parents think this through before deciding to raise a child, and I wonder how they manage to come to terms with and accept it. Because my daughter will inevitably go through things no child should have to experience. There will be times when she isn’t the center of attention, and whacky-bg times I won’t have the energy to chase her in circles. She’ll be one of those children who, at the age of 3, knows how and when to dial 911, and as she gets older, experience will make her worry about me, doing that thing my husband does where he tries to gauge my sugar through the pace of my conversation. She’ll get used to the sight of blood. She’ll have to learn restraint, that some of the candy in the house is just for me. She’ll very likely see me with extremely low bg, nonresponsive or confused, acting in a way that scares her. She’ll likely see me go through various complications throughout our lives. She’ll likely lose her mom at a younger age than she would have otherwise.
    
Before my husband and I first signed up to adopt, I thought a lot about the weight the child of a diabetic parent might carry. I’m sure the d-parents who actually conceive a child have the same thoughts, along with others that’re even more terrifying (see: everything Kerri went through over the past 10 months.) But I probably looked at the issue even more closely, because this child’s existence didn’t depend on us creating her. I knew we’d be amazing parents, but I also knew that for every child available for adoption, there are tens of other amazing parents who want them, most of whom don’t have a chronic illness. (And okay, those of you who know me are now thinking you need to comment, saying she’s lucky to have us⎯You’re sweet, but that’s not going to help. I know we’re lucky to have each other, but that doesn’t change the fact that she’ll necessarily need to make sacrifices. And now that I actually know our daughter, and love her with all my heart, thinking about those sacrifices hurts like hell.)
    
Oh lordie, this post has gotten too melodramatic and woe-is-us-ish, sorry. Listen, I’ve also thought about the good things that’ll come from having a diabetic mom…And there are good things, or at least good sides to the bad things. Anna will hopefully learn to care how others are feeling, sooner than she would have without me. She’ll have empathy and patience. She’ll learn not to take health for granted. And, you know, learning how to dial 911 is a useful skill for anyone. But the idea of my diabetes ever, ever being a burden for my child is pretty heartrending. Add to this the very real fact that I have much less time to test and log and weigh food and remember how long I need to extend a bolus when eating oatmeal, and I’m just scared the whole family will topple down the huge mountain diabetic parenting can be.

And yet many hundreds of thousands of people do it every day, and do it really well. They probably have to learn as they go, which I guess is what I’m doing now. (My first lesson was to have a constant stash of Dex 4s in my pockets so I can eat without leaving her side. Should’ve thought of this sooner, I’m a slow learner, but I do tend to get there eventually.)
    
What else have I learned from these five weeks of experience? I have a checklist now on my refrigerator, with items to pack with me before I leave the house. Now that I have to remember what to stock in Anna’s diaper bag, it’s easy to forget my diabetes supplies. I’ve learned that lack of sleep and an inconsistent eating schedule will completely skew my insulin needs, and I’ve learned how to test and bolus while supporting a bottle with my chin. I’ve learned that dancing a baby around the living room requires a decrease in basal rate, and that a buzzing CGMS in one’s pocket, while dancing said baby, makes her squeal in surprise.
    
And over all of this I’m learning something that I’m sure Kerri is learning now too, that the many challenges of diabetic parenting are completely and totally overshadowed by the pure joy of it.

You can read Elizabeth's blog, or check out her fantastic books on her website.  Thank you again, Elizabeth!

Posted by Kerri Morrone Sparling at 09:02 AM | Permalink | Comments (15) | TrackBacks (0)

Despite the fact that she feels I say her name wrong ("Saraaaaaah" vs. "Sara"), and despite the fact that back at CWD several years ago, the lady at the registration desk thought she was my daughter (ahhhh!), I'm honored to have Sara from Diabetes Daily guest posting today on SUM.  :)  She's very tolerant of my ball-busting, and I am pretty sure she might be one of the nicest people I've ever met.  So thanks, Sara, for lending your words today!

*   *   *

My whole life has been a competition. I have an older brother so I was always working to be as smart, athletic, funny, and creative as he seemed to so easily be.  When I was able to find those things that I was good at, like school, I worked very hard to not only be good, but the best. I’m not just competitive but also a perfectionist.

I was not diagnosed with Type 1 diabetes until my senior year of college in 2003. I think until that point, I could count the number of people I knew with diabetes on one hand, and four of them had Type 2. It was a whole new world for me, and one that I had to quickly perfect.

For example, I was sent home from the hospital after my diagnosis with what was basically an exchange system diet. Since I suddenly felt like I couldn’t control so many things in my life, following that diet was something that I could control. I ate the same thing every day and can remember it even now – an English muffin with peanut butter and a scrambled egg with cheese on it for breakfast, a sandwich on light wheat bread with a banana and two small ‘sugar free’ cookies for lunch, and a piece of baked chicken with vegetables and a piece of toast or small potato for dinner. Every day. I could measure my success by how well I followed that diet, and I followed it well.

In January of 2007, I stumbled upon one of the diabetes forums looking for the answer to a question. Living my life in the online diabetes world quickly became a new measure of success. I went from posting on my blog occasionally to posting almost daily. I was always reading the comments and posting some of my own on all the diabetes message boards. I became almost a nightly visitor in a diabetes chat room. I twittered diabetes and even pushed myself to be one of the first people to successfully finish the diabetes365 photo project. If anyone was going to have an answer to a question, I was going to have that answer and I was going to post it first! Being the best diabetic and, more importantly, the best member of the diabetes online community was my new obsession.

Obsession is not always a bad thing. The pressure that I put on myself gave me excellent control of my diabetes. I got my A1cs consistently in the low 6 range. I always knew about the latest controversy, advocacy, and research. I was taking really good care of myself, but for completely the wrong reasons.

My life had become nothing but diabetes and I didn’t notice anything wrong with that until it slapped me in the face this past October. It was actually what caused me to write this post and follow up with this one. Two people who are a very important part of my life shared with me some very painful things that had recently happened in their lives.  I almost immediately felt guilty because I knew that I had been so wrapped up in my diabetes world that I missed my opportunity to prevent even a small part of their pain.

I was suddenly forced with reevaluating my priorities. I don’t blog as much anymore. I don’t tweet as often as I should. I hardly ever visit the message boards anymore and I had to step back from being a moderator on one of them. I dropped out of my second attempt at the diabetes365 project after about two weeks. My perfectionist tendencies want me to call that a failure. But you know what? A bigger part of me is perfectly content with all of those decisions.

Diabetes still requires a lot of my attention. There is not a meal, a bedtime, a vacation, or even a long car ride where it does not make an appearance. And every time I look at my meter I am still reminded of those feelings of success or failure based on the number that appears. But there is so much more to my life than diabetes and I would rather have my life be measured by those moments rather than words or numbers on a screen.

Posted by Kerri Morrone Sparling at 10:29 AM | Permalink | Comments (9) | TrackBacks (0)

So, so awesome to have my good friend Karen guest blogging here on SUM.  She's the creator of a diabetes blog, a knitting blog, and Siah's yarn nemesis.  She's one terrific lady, and I'm very excited to have her filling in today.

*   *   *

Three years ago if you bet me a year’s worth of Blood Sugar Nirvana that I’d have a diabetes blog along with my knitting blog, I would have taken that bet.  I would have insisted I’d never have two active blogs.  And I would now have 365 days of constant highs and lows ahead of me, while you’d be enjoying a year of perfectly in-range numbers.

I started my knitting blog in 2005 while teaching myself to knit with a book that had a chapter devoted to blogging.  With each knitting blog I visited, the urge to join the knit-blog community got stronger.  I soon I found myself setting up a Blogger account and diving in.  I liked blogging from the start, even back in the early days when no one except my husband was reading.  Over time, I gained some regular readers and made some great friends, both online and in real life.   Although I blogged mostly about knitting, other topics peppered my posts too, including diabetes stuff.  But the thought of starting another blog dedicated to diabetes never entered my mind.  I certainly didn’t imagine there would be a thriving diabetes blog community out there.

Then came the day I started to seriously consider getting an insulin pump, even though the thought of being attached 24/7 freaked me out.  The self-conscious part of me didn’t want what I deemed an ugly piece of medical equipment clipped to my favorite outfits.  So I typed “where to hide an insulin pump” into my search engine and was brought to this very blog.  I read with great interest how Kerri tucked her pump into little pockets that Ann Taylor pants were designed with.  All along I had felt like the only person in the world silly enough to be self-conscious about an insulin pump.  It was wonderful to realize that others wanted to keep their pumps out of sight as well.  I continued to visit Six Until Me and soon started to visit the blogs of those who left comments for Kerri.  Often I was tempted to leave my own comments, but I held back out of embarrassment.   I figured anyone who clicked through and landed on my knitting blog would wonder what that heck this knitting chick was doing leaving comments on a diabetes blog.   In hindsight, that was a ridiculous assumption, because the diabetes community is so supportive and welcoming!  But to me, if I really wanted to join the D-OC, I decided I would need to take the plunge and start a diabetes blog.  And that’s when Bitter-Sweet was born.

At times having two blogs can be difficult.  I will admit I don’t post to either blog as regularly as I’d like.  Sometimes finding topics to for two different blogs can be a stretch.  Although on a knitting blog, it’s completely acceptable and even encouraged to just put up a picture of a pretty skein of yarn - that is absolutely considered a valid post.  It’s not so easy on a diabetes blog, because pictures of lancets or glucose tabs are pretty boring!  I could have just one blog that includes knitting and diabetes and anything else I wanted to blather about.  But I’m far too compulsive for that - I like things orderly and labeled, one blog for knitting and a separate blog for diabetes.  Heck, I could even start a whole new OCD blog but then I’d have three blogs . . . and three is an odd number so I’d feel compelled to start a fourth just to keep things even . . .  and frankly, it wouldn’t end well.  I’d end up with 100 blogs and people would start calling me a crazy blog lady.

So what is the upside of having two blogs?  Hands down, it’s the reward of being a part of two wonderful communities.  On either blog I can post about a problem or frustration, and my blog friends will rush to the rescue with support and tips and cheers to hang in there.  Although I have to say, I feel a tighter bond in the diabetes blog world.  Knitters are wonderful, don’t get me wrong.  But there is a different bond that forms when you share a chronic illness than when you share a hobby.  For this very reason, I’ve never once regretted my decision to maintain two different blogs at once.  Because even when writer’s block is at its very worst, and even though you can’t woo the D-OC with pictures of yarn, you can always get by with posting a picture of a good cupcake!

Posted by Kerri Morrone Sparling at 09:40 AM | Permalink | Comments (12) | TrackBacks (0)

Nan from My Pump Gear is today's guest poster, and she does such a great job of introducing her post that I'm going to just hand it over to her.  :)  Take it away, Nan!

*   *   *

Okay … I am thrilled to be a guest here @sixuntilme!!  Kerri’s is the first diabetes blog I started reading.  I remember searching for answers to my questions like  “How in the world does a 3 year old wear an insulin pump?”  And there she was!...talking about diabetes and fashion!  Well, I scoured her sight and archived posts until my eyes were bloodshot.  It was the starting point in discovering that my daughter, Claire, can actually live a full and happy life with, yes … diabetes.

When this opportunity arose to be a guest poster here, of course I thought of the exposure for our little business, My Pump Gear.  And, then I thought well maybe I just need to share our 8 year old daughter’s diagnosis story.  But, I’ve done that in several different ways online already.  So, if you’re interested, you can find our business here:  My Pump Gear and our diagnosis story here. 

What I really want to share is a story of connection for me, a mom of 3, whose youngest happens to have type 1 diabetes.

“Twitter? Who has time for that?”

“A tweet?  What in the world?”

“What can possibly be written in 140 characters that’s worthwhile?”

I remember having those exact thoughts as I set up an account.  I thought it would be good for business, although I had no idea how or why.  I went through the motions and began “following” people in relation to diabetes.  And then I noticed someone whose location was the Monterey Bay area.  This intrigued me.  That location is like my second home, so I “tweeted” @notsostilllifes.  I don’t remember exactly what I wrote.  But it started a conversation.

That was nearly a year ago.

Since that time, twitter has become my go-to source for encouragement, inspiration and answers.  It has connected me to a virtual support system.  Parenting a kid with diabetes can be lonely.  And, though family and friends offer their love and support, no one can truly relate to the constant of diabetes except those who live with it too.   This diabetes online community, via Twitter, Facebook and countless blogs fills a void.   

Last Friday, I had the opportunity to meet Melinda (aka @notsostilllifes) and her husband, Scott…live and in person!  It was a D Mom Tweet-Up, as we called it.  We got to visit for a couple hours. It was wonderful!  We talked diabetes, of course.  But we also talked about all of our kids, sports, school, our lives.  

If you’ve ever communicated with Melinda at all, you will agree that she is a wealth of information when it comes to parenting a type 1 kid (and sea glass hunting too…but that’s an entirely different post!)  Her son, Michael, will soon be off to college next year.  He has had type 1 diabetes since the age of five.  Michael was to join us that day and meet with all of us too.  But other demands prevented him from traveling around the bay that day.  We look forward to meeting Michael (aka Captain Insulin) on a future visit!  He has the perspective on diabetes that we all should have.

It was interesting … while visiting, Melinda would begin explaining something and I would think, Yes, I know that about you or I remember that story.  You see, even though we had never seen each other in person, I felt as though I was meeting an old friend for the first time.  There was a bond between us already, even before our meeting that day!

Connecting with others in similar life situations is so important.  I felt pretty isolated when it came to diabetes … for years after Claire’s diagnosis.  The type 1 families we knew were very few.  We craved interaction with people who really could understand what this disease means to our family.  Who knew that support was literally just a mouse click away?

I look forward to our next D Mom Tweet-Up!  Oh and, now, when people roll their eyes at the mention of Twitter … I just smile and nod.  : )

Posted by Kerri Morrone Sparling at 08:41 AM | Permalink | Comments (13) | TrackBacks (0)

I wish I had the chance to meet up with Traci when Chris and I were out at Sundance in January, but our schedules never synced up.  But thankfully, she's offered up her words as a guest post today, and I'm grateful to have her filling in with her perspectives on being the wife of a person with type 1 diabetes.

*   *   *

I remember sitting on that hard plastic chair in the doctor's office. The list of things we had to do before the wedding just running through my head. And you, so calm, but running your thumb softly over my knuckles. You knew what he was going to say. You had been living with this disease for so many years. I only thought I knew. I had worked with patients on the floor of the hospital who had diabetes. I got this. I understood this. A quick glance from you reassured me that we were going to be okay.
 
The doctor came in and sat down in front of us, paused for a minute and then looked at the chart sitting on his desk. He cleared his throat and then said, "First off, let me give you two my congratulations. However, I wanted to meet with you both, but most especially you Traci because there are some things that you need to know--that you will want to know as your marriage progresses. Diabetes will largely be your husband's responsibility, but you will find that it will become a family affair and you will have a large part in it as your marriage progresses."
 
And then came the lecture. The fact that Scott had had diabetes for over 20 years and had no long term effects at the time. The fact that I had to look forward to thyroid problems, kidney problems, amputations, and impotence?? (Is that word even in a soon to be newlywed's vocabulary??) I left armed with a dictionary sized amount of carb counting materials, diabetes booklets, and the smiley and sad faced chart that showed what signs and symptoms of hypo and hyperglycemia were.

The starry filled eyes of early marriage began to wane into the look of silent long term understanding, disappointment, and joy we came to recognize when we would look at each other.
 
The silent look we gave each other when we couldn't get health or life insurance because Scott chose to pursue his dream of owning his own business.  

The look we gave each other when we found out how much an insulin pump would cost out of our meager newlywed pocketbook wages.
 
The glance when we were told we couldn't get pregnant for years.
 
The surprised look when we saw those two dotted lines--a few short months after going off birth control.

Our first baby girl, and a few years later our first baby boy.

Our first house.

Saying good bye to our first house.
 
And signing for the second.

The comforting look of relief when you wake up and realize that I'm sitting next to you on a bed surrounded by tubing, IV pumps and bright lights after having an insulin reaction.

The tired looks we give each other as we grab not the alarm, but the meter at 3:00 am in the morning.

The weary glances we give each other when another and another and yet another medical bill come in the mail.

The look of pain depending on who got the pleasure of sleeping on the insulin pump most of the previous night.

9 years. Two kids. Two dogs.

Also two hospital admissions, two trips in an ambulance that you don't remember (but for some reason wish you did), and two different career moves. Looking back to 9 years ago when we sat in that same chair that sits in the doctors office today, I wouldn't change any of it. I'm actually grateful for it. And most especially, learning that your doctor was right. Diabetes is something you deal with and manage day to day, but it is a family affair. You are the one that shows me by example everyday that diabetes isn't something that your going to allow to take over your life. You live with it, and you learn from it. And you don't let it define who you are. Our kids have learned lessons on compassion and love that no book, no authority could ever teach them. And I have learned that love isn't just some word you throw around each day. It's much, much deeper than that.
 
Has it really become a family affair? In small ways I guess. I count the carbs for my dinner or dessert creations that you either happily or willingly try to consume to be nice. I order the insurance supplies and call to question the bills that arrive in the mail. You report about your doctors appointments, manage your day to day care, pump site changes, and invite me to wake you up at 3:00 in the morning to poke you in the event that you forget (which you quite often do, even when your son turns on that bright bathroom light in the middle of the night that you don't seem to notice). I entertain the kids when you have a sick day, hold them while you are taken away by ambulance, and check your blood sugar hourly for two days because you, yourself aren't able to do it. But while the doctor missed a lot of what our life would be like, he missed the most important thing. He never said how much your diabetes would bring us closer together. And I thank diabetes for forcing us to tackle the hard issues we may not have wanted to face, or may have put off. For sitting us down together at a computer each day to write about how we feel. For talking about the trivial and the serious parts of diabetes. And most especially, thank you, diabetes, for making us stronger through the hard times.

*   *   *

Scott and Traci are owners of the site DiabeticParents.org and write from their separate and combined perspectives on what life with diabetes is like on their blog http://blog.diabeticparents.org. Scott has had Type 1 diabetes since the age of 4 and was diagnosed with Addison's disease at age 19. He works as a sales manager and loves that it allows him to pursue his favorite sport of golf. Traci works with Utah Diabetes and the Faces of Diabetes and owns the site www.BurntApple.com. She teaches cooking classes and does regular appearances on her local television morning shows. They have two kids and two dogs who have this weird belief that they are kids in the family too. And are treated like it.

Posted by Kerri Morrone Sparling at 09:18 AM | Permalink | Comments (11) | TrackBacks (0)

Today's guest post is from Amy, aka "collectingblues" on Twitter, who writes about her "thoughts on sewing, knitting, life, and that whole diabetes thing."  Take it away, Amy!

Sunday, January 10, was the first and the last time I said the phrase “the new normal.” I was three or four days into my transition to Cyborg Pancreas, and stood in the shower, sobbing at the looks of an infusion site and the Dexcom sensor on my stomach. As I got out and toweled off, I looked down, and said to myself, “Well, this is the new normal.”

I didn’t like the sound of that phrase then, and I don’t like it now.

What is normal? I’ve been type 1 since I was 3 years old. Quite literally, being diabetic is all I know and remember. I’ve seen the transition from the Autoclix (and still shudder at the thought of using it again, to the point of preferring to stick a syringe into my finger in the absence of lancet availability) and wipe-off test strips to shiny new “clickers” and the Dexcom (often referred to as Thingy). So for me, diabetes is normal. It’s not different, or special, or another pithy cliché. It just… is.

It’s occurred to me over the past many years that what’s normal for me isn’t normal for others. While I wouldn’t say that I have a cavalier approach to the Care and Feeding of a Type 1 Diabetic, I do have a different perception of Normal than your average “normal” 30-something. Stick a sensor into your stomach? No problem. Laser surgery for retinopathy? A pain, but better than kidney failure. Poke myself with a lancet eight times a day? OK, whatever — let’s get on with it. It hit me that others don’t have this fun when a colleague was diagnosed with gestational diabetes. “Amy,” she said, “I can’t imagine always having to do this.”

Sometimes I do wonder what it would be like to not have to think so much about diabetes. What would I do with my time if I weren’t looking at CGM data, or trying to figure out a combo bolus in my head to combat a high? Would I suddenly become a five-star chef, or turn out quilted bags like Vera Bradley? Probably not. Knowing me, I’d just sit around knitting until 1:30 a.m. … just like I do now.  

A few weeks before I got my Dexcom, I was at my parents’ home for a few days off at Christmas. My parents knew I wanted Thingy, and that it was a long-time coming. I had first commented to them when I got my Ping, that at a football game I had really felt “normal” when I bloused for beer. I suppose my father thought that the Dexcom was the next step. As we worked to load my car before I drove back to Pittsburgh, he leaned over, hugged me, and said, “I hope this will help make you more normal.”

“Well, Dad,” I responded with a wry grin, “I’m not sure if I would have been normal even if I weren’t diabetic.”

I’m just me.

Posted by Kerri Morrone Sparling at 08:49 AM | Permalink | Comments (12) | TrackBacks (0)

Bethany Rose is a new diabetes blogger on the block (you can check out her blog at Me with the D) and today she's offered to guest blog here on SUM while BSparl and I are hanging out (and most likely cleaning up spit up).  Thanks for blogging, Bethany, and I hope you guys enjoy her words!

Let’s be honest.  Dealing with doctors isn’t always as pleasant as we’d like.  It’s difficult when we really do need them for help with something so pervasive in our lives.
 
Nobody knows our diabetes better than we do – we live with it every single day!  Still, we so often emerge from appointments with doctors feeling scolded, undermined, and/or unheard.  Why?
 
To be fair, there are some really good doctors out there (I should know – I see some of them!) and there are some pretty scary complications associated with poor control over this disease.  Perhaps our doctors are just doing what they think is best to help us avoid these complications.
 
Maybe our doctors just need a little help understanding the full picture of what we need from them.
 
A few months ago I had a unique opportunity to speak with a group of medical students about what it’s like to have diabetes and to deal with doctors in that context.  As part of this discussion I was able to communicate to these doctors-to-be some of the points that I feel medical professionals really need to understand when dealing with people with diabetes.  Following are some of the issues I raised:

1.  Every person with diabetes is unique.  A textbook might be a good starting point, but realistically, nobody has “textbook diabetes”.   We want to be viewed as individual patients with individual problems requiring individual diabetes management techniques.  Clearly there will be similarities between us, and certain generalizations can be made, but just because one strategy works for one person doesn’t necessarily mean it will work well for everyone with diabetes.
 
2. Some of us have spent a lot of time educating ourselves about diabetes.  We don’t want to be lumped into the same category as patients who aren’t interested in understanding this disease or how to manage it.  We know what we’re talking about and we appreciate it when that fact is acknowledged.
 
3.  Diabetes sometimes requires thinking outside of the box.  Since we deal with our disease on a day-to-day, hour-to-hour, minute-to-minute basis, we might have ideas that our doctors may not have considered or seen before, or that don’t initially seem to make sense.  But even when our suggestions seem unusual, we want to be heard and we want our ideas to be given a chance.  They might actually work!
 
4.  Sometimes poor control isn’t an indication of a lack of effort on our part.  Sometimes it just means we haven’t found what works for us yet.  Sometimes we need help finding a solution.
 
5.  People with diabetes deal with a lot of guilt.  (I know Kerri’s touched on this one in the past.) We don’t appreciate feeling blamed for our diabetes, for our diabetes management problems that we work so hard to fix, or for our diabetes complications that we’ve worked so hard to avoid.  Encouragement and motivation are helpful – blame isn’t.      

I don’t know how much of what I said stuck with the students that day, and I don’t know how much will continue to stick with them as they go on to get their degrees - perhaps even specializing in endocrinology.  I’m sure I only touched on the tip of the iceberg in terms of improving the doctor/patient partnership, but hopefully I was able to plant some seeds that will benefit their patients who are living with diabetes in the future!

Posted by Kerri Morrone Sparling at 08:21 AM | Permalink | Comments (21) | TrackBacks (0)

I am honored to have Riva Greenberg guest blogging today, and she has some great insight on what might be happening in the bodies of those who don't have diabetes.  Check out her post about testing the target range below, and thanks to Riva for filling in today!

*   *   * 

Thirty-eight years ago, when I was diagnosed, I remember very clearly lying in my hospital bed being told by my insensitive young male doctor that having a baby was out of the question. Oh, baby, how times have changed. Happy to fill in Kerri as you put up your tootsies.

If I asked you right now where you think non-diabetics’ blood sugar hovers what would you say? I would have guessed around 100 mg/dl and here’s why:

1)    Pre-diabetes is considered anything over 100 mg/dl up to 125 mg/dl
2)    126 mg/dl and up is considered diabetes
3)    The target range prescribed for diabetics is between 80 mg/dl and 130 mg/dl
4)    I must have watched every video on videojug of Dr. Anne Peters, diabetologist and Professor of medicine and director of the USC Clinical Diabetes Programs, whom I respect and admire say we should shoot for 100 mg/dl most of the time.

But based on an unexpected family experiment the anecdotal evidence I gathered is rather different. In fact it seems non-diabetics’ blood sugar rises even above our prescribed target range some of the time. Call me crazy but this was news to me.

My evidence gathering all began a few months ago when my mother told me my 84-year old father had diabetes. I was shocked. Yes, a surprising reaction for someone who blogs and lectures about diabetes, but the thought that one of my parents would actually get diabetes was, frankly, shocking. Maybe I was just being a little possessive? After all, diabetes is my illness.

A few weeks later my mother told me my father no longer had diabetes. The doctor said his blood sugar was O.K. This seemed just a tad fishy to me. My mother was confused as well. “Would you bring your meter with you next time you visit?” she asked. “We’ll test his blood sugar.”

I returned two weeks later with a spare meter, 100 strips and 100 lancets, a lancing device and my intense curiosity. I had my husband in tow and my brother, sister-in-law and niece were there as well to join for a family lunch. Seeing my testing supply-haul, my mother said, “Oh, no, I just thought we’d test one time.” I obviously took this a bit more seriously than she did.

Bringing out the meter the requisite two hours after lunch my father looked at it suspiciously, so my husband volunteered to test his own blood sugar. Then everyone wanted in. My father tested, my brother, my sister-in-law and my 12 year-old niece. The testing results of this group of non-diabetics respectively were: 155, 158 (that’s dad), 131, 130, 102.

Now for the side-story. My husband’s 155 mg/dl made him concerned about his own blood sugar. So he decided to test his blood sugar pre and post meals for three consecutive days. His first day out, his pre-breakfast reading was: 92, two hours after breakfast: 94, before lunch: 83, after lunch: 128. That 128, we guessed was from his French baguette at lunch. We also reflected that his 155 at my parent's house was the result of a lot of bread at lunch. Both numbers seemed to confirm that no one lives at or near 100 mg/dl steadily and that a refined carb meal tips the scales upward even for non-diabetics.

Mind you this is all anecdotal evidence, but it does suggest that non–diabetics’ blood sugar, just like ours, goes up after eating and much higher at times than I would have guessed. It also makes me feel that these limits, bands and ranges we’re all trying to squeeze into throughout the day should come with a clause: “Sometimes no matter what you do your blood sugar will be out of range. Keep breathing and just fix it.”

This experiment may give you some piece of mind, it did me. I know that after struggling and striving to be hovering, like a space-craft, in target range all the time, that even my best efforts won’t always produce blood sugars that sit demurely where they should, and it’s O.K.

Two side notes: 1) My prince among men, my husband, toppled the second day into his blood sugar testing. “Boy, my finger still hurts from this morning! I don’t think I’m going to do this anymore,” he said. Frankly, I think it was the dribble of blood on his keyboard that pushed him over the edge.

And 2) my father does not have diabetes, but pre-diabetes would be a safe bet. As various doctors have told me, if we live long enough most people will develop type 2 diabetes over time as the typical American diet and lifestyle wears out our insulin-producing beta-cells. Good thing I left a meter and 95 test strips at my parent’s house.

Riva is the author of “50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It” and “The ABCs Of Loving Yourself With Diabetes.” Riva presents educational/motivational presentations to fellow patients as a peer-mentor, blogs on the Huffington Post and her web site diabetes stories, and helps others live an exceptional life, not despite having diabetes but because of it, using diabetes as a catalyst to create a healthier, happier, more meaningful life.

Posted by Kerri Morrone Sparling at 08:12 AM | Permalink | Comments (18) | TrackBacks (0)

Nick has a the most adorable little girl I have ever seen, and both he and his little one have type 1 diabetes.  He has offered to guest blog here today about some of the challenges he faces at the pharmacy, and I'm happy to host his words here on SUM today.  :)

There are a lot of things that are not funny about being diabetic, but there are some that are. Thrush is not funny, but pretending to use your pump as a phaser on everyone that asks if you’re “brittle” is. Lows in the middle of the night are not funny. Looking incredulously at strangers and yelling “WHAT DID YOU DO” when your kid’s CGMS alarms is funny. Well, it’s funny to me anyway.

I never in my life thought that a trip to the pharmacy would be fun, let alone funny. However the perspective of a type 1 diabetic is nothing if not unique. The pharmacy is not a foreign land for us. Most of the non-pancreatically challenged among us wander in for the occasional anti-depressant and a pink “Snuggie.” We, however, are the business-travelers of the pharmacy world. I can pick up a bag of dog food and a 12-pack of juice boxes in no time flat, and I can do it in any pharmacy at any time. Mom is so proud.

Being in the pharmacy so often means we are keenly aware of when a pharmacy is well-run, and when one appears as though it is run by drunken space-monkeys. I had the supreme pleasure of visiting a well-run pharmacy in my hometown. The pharmacists and staff knew us by name, and they were partners in our health care. That’s really how it should be shouldn’t it? Frankly, I didn’t know any differently. And then we moved away…

I witnessed my first pharmacy hoedown within a month of moving to this fair city. My first thought was “so THIS is what a drunken space monkey looks like!” Since that time I have re-considered my position and decided I wasn’t really being fair to the pharmacy or to drunken space monkeys. What I was actually witnessing was a pharmacy hoedown.

In all likelihood, you have all seen a pharmacy hoedown; you just didn’t know the name for it. Luckily for you all, most of Kerri’s brain cells are being consumed by BSparl and mysterious writings found in jars of peanut butter, so I am here to enlighten you.

First, the pharmacy hoedown begins with you, the customer, walking up to the counter and automatically regurgitating your last name. This is where the dance begins. The pharmacy tech leans over toward you and says “Holmes you say?” And I say yes, and then I spell it. At the conclusion of this opening set, the fiddle launches in the background and the tech walks first over to the dizzying array of white bags arranged like a child’s playroom. Unable to spot the name, they spin in a circle and look through the bin of recently completed bags. Typically this stage of the dance is highlighted by a deep sigh followed by a customary deep bow to search under the counter, just in case my prescription magically ended up with her warm can of Amp. Is this dance sounding familiar yet?

At this point the tech joins their partner, the pharmacist, where a brief bow and conversation takes place along with them both tracing the same route, only in reverse. What a treat! Pairs! Following the crowd-pleasing synchronized 720 degree spin, the pairs portion of the dance ends…the fiddle slows to a deep and haunting rhythm…and the crowd behind you takes in a deep breath in anticipation of the move you’ve all been anticipating…

“What was your name again?”

Nick offers up his "Obligatory Blogger Info" ... in his own words:

"I was diagnosed with type 1 diabetes about 2 months after my first endo tried to kill me by diagnosing me with type 2. My daughter, Emma, was diagnosed with type 1 diabetes when she was 9 months old; she is now a beautiful and happy 5 year old. My only randomly-updated blog can be found at Diabetes 360."

Posted by Kerri Morrone Sparling at 08:02 AM | Permalink | Comments (15) | TrackBacks (0)

Today's guest post is from talented photographer Amy Free, and she was diagnosed with type 1 diabetes a year ago, at 27 years old.  She tells the story of the fog of falling out of control and the hard climb back.

I hung up the phone and just wandered around our quiet empty house bawling my eyes out. Bristol, our great dane, followed me shamelessly as I ended up in a crumpled pile at the foot of our bed. The obvious concern in the nurse’s voice as she gave me my blood work results was enough to shame me. My blood sugar numbers along with my A1C were off the charts, and on top of that my cholesterol was also high enough to be of concern. I could not hide from reality any more. The numbers were there to prove me wrong.

About a year ago, at 27 years old, I was diagnosed with Type 1 diabetes. It was a jilting reality that I didn’t really fully understand, but it scared me enough to kick me into a reactive mode where all I wanted to do was fix it. My nature as a "people-pleaser" took over and I wanted to show everyone that I was smart and able enough to manage this strange new disease that had entered my life. So that is what I did... for the first few months. I successfully dropped my A1C from a hideously high 14, all the way down to below 7 within 3 months. I religiously monitored, charted, tested, gave myself shots, and dutifully counted carbs. But after a while all the shots and pricks and “managing” got to be quite bothersome. No one around me really seemed to understand what I was going through. Friends and family were supportive, but no one really seemed to fully comprehend this disease and the constant (and emotional) the management that I was all the sudden responsible for 24/7.

Once I realized that no one else really understood what was going on with my body, I decided to start ignoring it myself. I fell to the allure of eating whatever I wanted and still managing to lose weight (extreme weight loss was one of my symptoms before being diagnosed). I stopped checking my numbers and taking insulin as frequently, so when I did happen to check, my blood sugar was usually well over 300. It was not pretty. When people asked how my diabetes was doing, I just said... oh its fine. Most people didn’t even know what to ask to call my bluff. I somehow managed to get through my days in a haze of exhaustion by chugging water and Diet Dr. Pepper. Looking back it’s actually pretty amazing that I could put on such a good front (and that I never suffered from DKA), when in reality I was doing such serious damage to my body.

Thank goodness for that phone call from the nurse that snapped me back into reality. The reality that if I ever wanted to even try to start a family I needed to start making my body a safe place for a baby to exist and grow. I needed to start making my body healthy again for me, for my husband, and for all the people who love me. I needed to get back on track with my relationship with food and insulin, respectively.

That was almost 6 months ago now and I can safely say that I’m in the healthiest place - mentally and physically - in living life with Type 1 diabetes that I’ve been in quite some time. I have accepted that diabetes is a part of my day... all day, every day. It’s not something that I can just take a break from or ignore without serious long term consequences. Sure there are ups and downs, highs and lows along the way, but I’m learning accepting and learning from those things is a part of the healthy management process. The learning curve is a steep one, but I’m on the climb and I love to connect with others who are in their own various stages of the process.

Amy Free is a lifestyle photographer who lives in NC – and whose heart lives wherever adventure can be found.  She makes a home with her husband, Ross and their lovable Great Dane, Bristol. She has been living with Type 1 diabetes since August 2008. You can visit her photography website at AmyFree.com.

Posted by Kerri Morrone Sparling at 08:03 AM | Permalink | Comments (12) | TrackBacks (0)

I'm off figuring out how to change diapers and all that fun stuff, but while I'm out, I've had some very generous offers to guest post in my absence.  Today's post is from Sherry Roberts, who writes the diabetes blog Jenna's Pet Monkey, where she talks about her life with her two daughters, one with type 1 diabetes.

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As parents our aim is to teach our children how to be independent of us.  It is a painstaking, bittersweet process spanning many years and encompassing countless achievements along the way—the first time a baby reaches for a toy, holds a spoon or takes a first step.   The first time a child sleeps over at a friend’s house, rides a two-wheeler, drives a car—each first represents a step closer to the goal of independence and is celebrated accordingly.  Having a child with Type 1 Diabetes adds considerably more to this list of firsts.

My daughter, Jenna, will be four years old in a few weeks and her two year diagnosis anniversary will follow nine weeks after that.  I haven’t pushed her to learn to perform any of the routine tasks related to the management of her diabetes.  She’s still quite young and lacking in some fine motor skills to accomplish the tasks involved with ease.  It takes a steady hand to zero-in on that bead of blood with a test strip then allow enough time for the strip to slurp it up until an adequate sample is obtained.  Besides, she faces a lifetime performing the never-ending, daily litany of blood sugar checks, boluses, site changes and corrections.  There’s no hurry.  Like other aspects of raising a child this will be a process requiring time, patience and a relaxed, supportive approach—the pace of which will be set by Jenna and her cues signaling readiness.

Last year on a few occasions, I tested the waters and offered Jenna the opportunity to do her own blood sugar check.  Each time she refused I would do the check myself without further discussion.  Then one day during a family camping trip I offered her the lancing device expecting her to refuse as usual.  This time, however, she surprised me when she quickly took it from my hand with such confidence—more than she was prepared to commit to.  Jenna’s expression when she pressed the device to her finger and triggered the lancet was that of shock, bordering on panic.   It was then that I knew she hadn’t really intended to perform her own check.    But when she saw the drop of blood and realized what she had done her panicked expression changed to one of proud amazement, like when a child snaps her fingers for the first time or blows her first chewing gum bubble.  

We congratulated her on this achievement being careful not to overdo it.  Jenna isn’t one for a lot of fanfare.  She is uncomfortable in the spotlight and becomes annoyed by too much ado, perhaps feeling patronized.  I thought this would signify a turning point whereby Jenna would feel empowered and take more of an active role in her diabetes management.  But this was an isolated event.  Jenna refused to do any more checks after that.

Then one day this past January, five months after the unintentional lancing incident, Jenna was just about to enjoy a mid-morning snack.  She had washed her hands and was pulling out the kitchen stool to sit and enjoy her cheese, crackers and half an apple.  I asked her to get the checker ready which entails getting a strip out (she has finally mastered uncapping the container without flinging strips everywhere, for which I am truly grateful) and inserting it into the meter.  Jenna said “Sure Mom. “ After a brief moment she said something I wasn’t expecting; “...actually, I’ll do my own check today.”  Then without hesitation she proceeded to do just that, as if she had done it a hundred times before.

When she was finished and the number appeared I kissed her on the top of her head and with as much restraint and composure as I could muster I quietly said “Good job, honey!”  But inside I was bursting.   I realized that this was the way it was meant to happen.  On her own terms Jenna had done her blood sugar check and had taken one more step closer to her independence—a step I wish with all my heart she didn’t have to take.  But the fact of the matter is it’s just one in a long line of firsts necessary for her to become independent in life and in the management of her diabetes.

It’s also just another reason for me to be proudly in awe of Jenna—my beautiful, brave, strong girl.

*   *   *

Thank you so much, Jenna, for sharing your words!

Posted by Kerri Morrone Sparling at 08:18 AM | Permalink | Comments (16) | TrackBacks (0)

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

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Pilgrimage

Shortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

*   *   *

Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

Posted by Kerri Morrone Sparling at 10:21 AM | Permalink | Comments (12) | TrackBacks (0)

Today, I have the honor of hosting a guest post from Scott Kasper, photographer extraordinaire and parent to three little boys, two of which have type 1 diabetes. He offered to share a diabetes moment he and his family had over Superbowl weekend, which I'm proud to share here.

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We are a family of five … a mom, a dad, and three awesome boys aged 12, 10, and 6. We love to do all the stuff that every family loves to do. This weekend was packed with snowball fights, snow men, fire in the fire place, hot chocolate, movies, the Super Bowl, and of course the family board games … fun for all ages!!!
 
Sounds pretty much like a normal, par for the course white picket fence family in suburban New Jersey doing what most normal families do … right? Well, for the most part that may be true. However, there is a big disclaimer that makes my family a bit of a departure from most others. Two of the three boys have type 1 diabetes. That means, for us, the six year-old’s blood sugar crashed half way through the snowball fight, the twelve year-old gets mad when he has to count his carbs as he grazes the treats at the Super Bowl Party, and the ten year-old (who does not have diabetes) complains that he is tired of having to have sugar free hot chocolate!! Oh, and then there is the board game…

This weekend the kids decided that they wanted to play Sorry™. Okay, that’s fun enough, and doesn’t last all afternoon the way monopoly does. Mom was reading a book (if you can still call it a book when all one does is scroll from page to page on the Kindle™), Dad was available, and it’s a game for four players….perfect!! Not exactly. One of the things my kids like to do most is NOT put stuff away when they are done. As it relates to Sorry™, that means that there are no green pieces left.
 
“That’s okay Dad”, pipes up the six year old, who has had type 1 diabetes since the age of 13 months. “I know what we can use!” Off he went toward what we refer to in our home as “The Cabinet,” where we have a veritable pharmacy of diabetes supplies. Within moments he returned with four cone shaped objects, just the right size to substitute as a Sorry™ game piece. It did not strike me at first, but as I got my first turn I quickly realized that the pieces he had provided were, in fact, packaged needles for the insulin injector pen. 

We are a family of five that is, in large part, defined by type 1 diabetes. I have seen it impact every aspect of our lives. About this, my wife and I are very sorry! We’re sorry that two of our boys have to grow up with the daily complexities of life with diabetes. We’re sorry that my middle son wonders whether he will ever become diabetic. We’re sorry that, perhaps, something we did or something we genetically passed on has caused this to happen…on a daily basis we are sorry!

This weekend, without even missing a beat and without realizing how NOT normal this is, my six year old resorted to using insulin injection supplies to play a board game … not just any board game … a game of Sorry™!

How ironic is that!

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Thanks for sharing, Scott!  To check out more of Scott's amazing photography, visit his website (and you can also become a fan on Facebook).  And if you're looking for a classy medical ID, visit the website of Scott's wife, Rachel, at RescueMeIDs!

Posted by Kerri Morrone Sparling at 09:32 AM | Permalink | Comments (24) | TrackBacks (0)

I wasn't aware of this story until Shannon (fellow d-blogger at LADAdeeda) emailed me and asked me to help her raise awareness of this story.  Apparently, Roddy Pippin stole cattle.  And is being held for eight consecutive years, without proper medical care.

Roddy has type 1 diabetes.

Shannon has contributed a guest post about this issue, but I wanted to also add a link to a post on Roddy's Ride 4 Life page, about the crime he committed and the punishment he is receiving.  Check it out and draw your own conclusions as to whether this punishment fits the crime, and please read Shannon's post below for her take on Roddy Pippin.

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Many years ago, I watched a movie called Return to Paradise.  A thrilling premise, it centered on a young man imprisoned in Malaysia for drug trafficking.  He was sentenced to death by hanging unless his two friends, who also bought and used the drugs in question, returned to Malaysia and accepted their share of the responsibility – three years in prison if both returned, six years if only one returned.  The deal, while not in writing, was promised by the Malaysian justice department.  One friend ultimately complied.

But, in an unbelievable twist, an American reporter wrote a story about the young man, his sentence, and the “unjustness” of Malaysia’s justice system.  As a punishment for this negative portrayal of Malaysia, the judge on the case refused to abide by the terms of the agreement.  The first man’s death sentence remained, and the other was sent to prison.

Watching this film, I waited for the dramatic rescue of the man.  As he was led to the gallows, I waited for the last-minute stay of execution or other intervention.  None came, and he was hanged.

This movie was a fictional account, but it’s not difficult for us to imagine this sort of scenario happening in Malaysia.  It’s easy to picture it happening in China.  Or Indonesia.  Or even Mexico.  But, do we expect that sort of thing to happen here in the United States?  I never did.

Roddy Pippin is just twenty-six years old.  When he was nineteen, he committed a crime.  While it might not seem all that serious to me, I recognize that it is very serious to his victims.  His crime?  Cattle rustling.  He stole livestock from hardworking farmers in his Texas community.  At nineteen, he made a stupid, juvenile mistake.  One that he might pay for with his life.  Roddy has type 1 diabetes.

I think most T1s have thought about what would happen if we suddenly lost the tools we rely on to manage our diabetes.  I’ve even had the thought about what life in jail would be like for a T1.  It’s even worse than I thought.
As I’ve learned more about Roddy’s experiences, I know that being a T1 in jail is harsh.  Having your care managed by those who really don’t care at all is the reality.  Recurring hospitalizations for diabetic ketoacidosis (DKA) are common.  After all, people die from DKA all the time.  In fact, in a recent, highly-publicized Texas case, the parents of a sixteen-year-old girl are facing manslaughter charges in her DKA-caused death.  They took her insulin pump away, she became sick, and within days, was dead.

So, Texas recognizes that deliberately withholding insulin from a T1 diabetic is murder (or at least, manslaughter).  Yet, they care little for Roddy’s health.  Instead of giving him access to adequate medical care, Roddy has instead been moved to a facility that houses violent criminals, even death-row inmates.

Where is the justice in this?  How large should Roddy’s debt to society be?

*   *   *

Your thoughts?

Posted by Kerri Morrone Sparling at 08:07 PM | Permalink | Comments (13) | TrackBacks (0)

Today, I'm honored to have Catherine Price (of A Sweet Life and The New York Times fame) guest blogging at SUM, and she's tackling the issue of the Christmas holidays and diabetes.  Enjoy her post, and welcome her to the diabetes online community!

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December is scattered with diabetic land mines, and things only get worse on holidays themselves. In my case, that's Christmas, an occasion my family used to celebrate not just with large amounts of carb-laden foods, but by going to the Nutcracker, the world's most diabetically unfriendly ballet. Featuring a hula-hooping troupe of human candy canes, the entire second act is set in a place called The Land of Sweets, and stars the nemesis of every diabetic ballerina: the Sugar Plum Fairy.

I was lucky -- I wasn't diagnosed with Type 1 till I was 22, which meant I had a childhood full of injection-free holiday treats (and, for that matter, ballets). Believe me, I lived it up: Christmas was a time to make chocolate-dipped peanut butter bars for my grandmother, who had a sweet tooth, and birthday cakes for my dad, who was born on Christmas Eve. My mother and I celebrated the holidays by baking Irish soda bread and laboring over pots of boiling oil to make chrusciki, a traditional Polish cookie made of deep fried dough dipped in powdered sugar. And at college, when my classmates and I decorated a tree with hand-made gingerbread men, I was known for eating cookies off its branches. In other words, as someone who spent her youth with a natural source of insulin, I know all too well what we diabetics are up against. Forget two front teeth -- all I want for Christmas is a new pancreas.

It's easy to let the consequences of our malfunctioning immune systems get in the way of holiday fun, but this year, I've decided to adopt a new attitude. I was wandering around a mall a few weeks ago and noticed that I was feeling very satisfied with myself.  I tried to figure out why and realized I was feeling virtuous for not spending money when there were so many options around. This made me happy for a moment, till I realized why, exactly, I hadn't made any purchases: there wasn't anything that I wanted to buy. I didn't want faux-fur-lined Dansko clogs; I didn't need reindeer candle holders from Pottery Barn. Sure, I enjoyed looking around, and I did end up with a $15 box of Aveda tea. But for the most part, being virtuous was easy. Not only did this faux sense of self-control make me feel good about myself, but it left me happier about the few things I did decide to buy.

So what if I were to adopt a similar attitude toward food? It's easy to bemoan all the things that diabetes makes hard to eat, but there are plenty of high-carb holiday treats that just aren't that good. Like candy canes, for example. Who needs more than a few licks? Egg nog is great till you see one of those holiday scare stories on the 5 o'clock news about how many calories there are in a cup (343, to be exact). And then, of course, there's fruitcake -- loaded with fat, studded with dried fruit, and completely, totally, unappealing. The list goes on. Christmas Stollen -- gross. Rum-spiked fruit punch -- fine, till you get up on a table at your office holiday party and insist your boss refer to you as Santa. Cakes that look like yule logs? Totally not worth the insulin.

Approached this way, holiday eating can become almost fun: just surround yourself with food you don't want and then take pride in saying no. It reminds me of a quote I once heard about Miles Davis. Someone pointed out that what made him such an amazing musician was the notes he didn't play. So forget feeling guilty about that one Christmas cupcake. Instead, measure your accomplishments by the food you didn't eat. That way, when you meet a holiday cookie you truly can't resist --or, in my case, a glass of really rich hot chocolate -- you can count up the carbs, turbo-charge your pump, and enjoy.

Catherine Price is a freelance journalist and blogger/frequent contributor to the diabetes site A Sweet Life.

Posted by Kerri Morrone Sparling at 09:46 AM | Permalink | Comments (5) | TrackBacks (0)

Posted by Kerri Morrone Sparling at 08:22 AM | Permalink | Comments (12) | TrackBacks (0)

Bennet Dunlap is a husband, father of some seriously cool kids, and blogger over at YDMV.  He's also the keeper of a pink camera and a bit of a goofball.  But he's been a supporter of the Sparlings (yes, both of us) and I'm both honored and a bit scared to have him guest posting on SUM today.  You just never know what Bennet is going to say.

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Kerri asked me to guest babble while she flies off to Southern European film shoot. Sucks to be her huh?

What do you get out of the deal? Less than squat - you are stuck with me as the After School Movie of the Week Special Guest Star.  Sucks to be you, huh? 

Anyway this whole Mediterranean movie thing has me thinking of the old Clint Eastwood spaghetti westerns. Stumped for anything intelligent to say I thought I would turn to Clint for some type 1 diabetes care wisdom:

Diabetes life is only in part about Blood Work most is about attitude. Look at the meter and say make my day.  When you don’t like what is says then learn to adapt, to improvise. The key is to get the care done Any Which Way You Can. Don't walk a Tightrope trying to make it A Perfect World. That would be a True Crime.  Don’t go looking for a Sudden Impact.

Newbies  - you may be the The Rookie but you’re not in the Dead Pool. It isn’t Breezy, easy. BG is sometimes going to go Every Which Way But Loose. When your fingers feel like "Rawhide" remember someone thinks you are the Million Dollar Baby (Like say the strip companies!)

Be the Enforcer of what you do and let the numbers be the Changeling. When your numbers go to Where Eagles Dare or drops top where you are the Pale Rider,  don’t let them make you feel you are Unforgiven on Heartbreak Ridge. You have the Absolute Power to move up from a Gran Torino to a Pink Cadillac.

It would be fun to move Clint into Larry Bird territory around here, so how about chipping in your favorite Clint inspired silliness?

OK if that doesn’t make you miss Kerri, I don’t know what will.

*   *   *

Ring, ring.

Kerri:  Hello?

Larry:  Kerri.  It's me.  I'm not sure if you saw that post from that Bennet guy?

Kerri:  Larry ... um, I obviously saw it.  It's what we were just reading before you called.  Kind of hard to miss.

Larry:  He's not building many bridges into our respective Madison Counties, Ker.  If he runs his mouth about our relationship, I might send him out to orbit like a Space Cowboy.

Kerri:  Dude, you just got sucked into it.   Don't let Bennet get in your head.  You'll never get him out.  It's like ...

Larry:  Escaping from Alcatraz?

Kerri:  Silence.

Larry:  Get it?  

Kerri:  Larry, this just got too weird.  I gotta go. 

Click. 

Posted by Kerri Morrone Sparling at 08:04 AM | Permalink | Comments (8) | TrackBacks (0)

 

Posted by Kerri Morrone Sparling at 08:00 AM | Permalink | Comments (10) | TrackBacks (0)

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

Heeeeeeere's Jessica! 

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

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

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

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

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

*     *     *

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

Posted by Kerri Morrone Sparling at 10:24 AM | Permalink | Comments (17) | TrackBacks (0)

I'm not sure why I'm even letting her do this, but she asked like a million times.  So here is a guest blog from Ms. Siah Sausage. 

Sigh.

*   *   *

I'm not as bad as she makes me out to be. I'm a little gray cat and I barely cause any trouble at all, so I'm not sure why she's always complaining about me.

Sure, I like to use the litter box and then attempt to snuggle with her, but I'm just as shocked as you are that she doesn't want to appreciate my olfactory contributions.  Every scent I make is lovely, I assure you.

And of course I have to pad around the bed while they're trying to sleep. But how am I supposed to know which side of the bed is softest and comfiest unless I try both out, repeatedly?  She's just grumpy because she goes to bed late and gets up early.  It's not my fault.  I just lay there, against her ankles, forcing her to sleep like she's the Vitruvian Man.  (I looked that up.) 

Yes, there's also some truth to her issues with me stalking her in the bathroom. But that's just fun for me.

Also, this whole "the cat ate my pump tubing" complaint is just plain silly.  I am a cat.  If something plastic and bouncy dangles in front of my face, I will go after it.  Instinct, people!  I haz them.  Besides, insulin has a nice, chewy band aid sort of taste to it. Same goes for playing with and hiding test strips.  Toys are toys - I don't care if they have your DNA on them.  (Yes, I also looked up "DNA."  I may be a cat but I can use Google.)

The plain truth is this:  She loves me.  When people aren't looking, she picks me up and snuggles me.  She balances used test strips on my head and laughs at how I walk around without knocking them off.  She talks to me when Chris isn't home, and I wouldn't be surprised if she was on the verge of issuing a commemorative plate in my honor.  

So don't listen to her rantings about what a pain I am.

The woman thinks I'm my own pajamas. 

*   *   *

I don't even know what to say.

Posted by Kerri Morrone Sparling at 09:18 AM | Permalink | Comments (16) | TrackBacks (0)

Today's guest post comes from blogger Jeff Kuhns.  His daughter Olivia had type 1 diabetes and his blog, Team Olivia, was among the first that I found after I started SUM.  I'm honored to have him posting here, sharing the perspective of the parent of a child with diabetes.

*   *   * 

10.2!  10 point freakin’ 2!  I was aghast, shocked, astounded, and flabbergasted.  At least I felt the need to be.  Play the part for the dietitian and the CDE.  But I guess I knew.  Being father of the year was going to take a little more work.  I’m taking this hard because I had the unfortunate duty of being the one to take the day off and hit the doctor’s appointments.

As a father of a 10-year old Type 1 daughter.  I always struggle between the need for my daughter to gain independence with her diabetes and the need to make sure that she remains healthy.  This time I apparently erred in the wrong direction.  (I say I because I am writing this but really it is we – my wife takes a tremendous amount of responsibility.) Never have either of us been “helicopter” parents.  We were raised to be independent and have lived away from our families for almost 20 years. 

So, 10 point freakin’ 2.  Let that settle in and wrap your head around it.  That’s an average blood sugar of around 300 – AVERAGE!  And, Olivia, my daughter, is on a pump.  “Horrible,” as the CDE reiterated to me. What is going on?  (This is where I think it is pertinent to mention that Olivia was also recently diagnosed with ADHD.)  Forgotten boluses!  Incorrect basals! Not putting insulin in before she eats! 

I had to reconcile it with myself.  All of these things could have been better reinforced by my wife and me.  We are ultimately responsible for our daughter’s well being.  It was time to take back the responsibility for now.  Independence will come – but in small steps.  Now we have a goal, 8.5 or bust.  This means an average blood sugar around 200.  How?  Phone calls when we are not eating together.  My wife and I manipulating the pump at meal times.  Consequences for forgotten boluses.

Okay, so “Father of the Year” may have to wait a while but, there are more important things!

(Olivia pretending to eat a giant cupcake.)

*   *   *

Jeff, we'll be pulling for you.  I know Olivia (and you guys) can hit that 8.5!  Thanks for posting, and let us know what happens! 

Posted by Kerri Morrone Sparling at 08:27 AM | Permalink | Comments (6) | TrackBacks (0)

Today's guest post is from ePatient Dave, who beat stage IV, grade 4 renal cell carcinoma with the help of fantastic doctors, supportive family and friends, and the power of the ePatient movement.  Today, Dave writes at The New Life of e-Patient Dave and he's offered to post here on SUM about the true power of patients online.  (And we, as PWDs, know how important the patient community is!)

One year ago today I finished reading e-Patients: How they can help us heal healthcare, the e-patient white paper. It turned my head around because although I’d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.

The people who assembled that report (not me) are smart, perceptive, and insightful about the future. When I “synopsized” each chapter in posts on my own blog last summer, here’s what I wrote about chapter 2.

This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.

Remember, I didn’t read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, “How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!” So here we are.

From the introduction:

“John Seely Brown… notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm … We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view… But as Brown discovered, ‘Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.’”

The authors – mostly doctors, remember – said “Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before.”

See what I mean about how this had strong echos for me? They continue:

… many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.

Presenting their findings, they said “We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were ‘anti-astronomer.’” The preliminary conclusions:

1. e-patients have become valuable contributors, and providers should recognize them as such.
“When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”

2. The art of empowering patients is trickier than we thought.
“We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”

3. We have underestimated patients’ ability to provide useful online resources.
Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!

4. We have overestimated the hazards of imperfect online health information.
This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.

    * “[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
    * We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)

5. Whenever possible, healthcare should take place on the patient’s turf.
(Don’t create a new platform they have to visit - take yourself wherever they’re already meeting online.)

6. Clinicians can no longer go it alone.

    * Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberge, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
    * In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift - same for your interest in “participatory medicine.”

7. The most effective way to improve healthcare is to make it more collaborative.
“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”

Great stuff! An awakening for all players in the “ecosystem,” as we say in the business world: patients, providers, equipment developers, everyone.

Wake up to the new world of participatory medicine: equip, enable and empower patient participation.

*   *   *

I love it - "participatory medicine."  We, as health bloggers, are part of an enormous revolution.  And I'm proud we're all a part of it, from the bloggers to the commenters to the lurkers.

(Note:  This post originally appeared on e-Patients.net.)

Posted by Kerri Morrone Sparling at 01:00 PM | Permalink | Comments (1) | TrackBacks (0)

The guest blog today is from Willie Cromack, the CEO for Accu-Chek Cyclebetes.  Willie writes passionately about Cyclebetes and their mission to keep the promise for a diabetes cure.  That sounds pretty darn good to me. 

The floor's yours, Willie!

I don’t have diabetes.  I don’t know what it is like to monitor my sugar levels.  I don’t know the emotional levels that accompany being a type 1 diabetic or even the parent of a child with diabetes.  I am not an official insider.

However, I am loyal.  I am aware.  I understand the consequences.  I am a parent. I am passionate about leaving the world a better place than when I came into it. And I must help my friend fulfill his promise.

In 2007 a group of five friends bandied around one man who had made a promise to his daughter.  I was one of those men.  The father’s promise: to cure juvenile diabetes before his daughter’s 18th birthday.  In 2007 she was 12.

As it turned out we decided to take our passion for the outdoors, sports and events and create a cycling event like no other. Team Halifax to Vancouver [Team H2V] was born.  The idea: relay race across Canada [just over 6000km] in the shortest period of time ever.  Long story short: we succeeded in crossing in only 8 days and raised nearly $1 million for the JDRF.  More than that the media we gained, we raised the awareness of juvenile diabetes in Canada by an enormous level.  Watch the story unfold here.  

When we returned I resumed my life as a bike shop owner, an event creator/promoter, and a dad.  However, I was haunted by the idea that we had created something amazing and I did not want it to die.

We continued with our ideas and proceeded to write a book on the attitude it took to create our amazing ride.  It was called the Principles of the Ride: How to maximize what’s inside You.  Of the physical copies proceeds would continue to aid the JDRF.  (If you want a free copy, you can get one here.)

Still it was not powerful enough to create a long-term legacy.  We needed young people around the world to take action, see their power and we needed our original ride to inspire their efforts.  For years I had done a lot of promotional charity work through my bike store and these efforts ended up yielding the final piece of the legacy puzzle.  In particular, I had done some 24 hour rides within my store to raise money for charity.  I would use a bike trainer to ride continuously for an entire day and our customers would throw a few dollars into the jar.  The money raised was always a significant amount but paled in comparison to the money we raised going across Canada.  Coming from the category of “you just never know who is paying attention or what will happen” a friend and racer at John Henry Bikes wanted to talk to me, inspired by the race across Canada.  He had also been a person who had threatened to join me on my 24 hour spins.  Together we decided to create a 24hr spin-a-thon at the high school where he taught.  But rather than being the heroes we would emphasize school leadership committees taking on the production.  The Team H2V ride across Canada would be the inspiration for a modified version of relay teams indoors and at a high school.  The focus would be - students leading students to help their friends, family and others with type 1 diabetes.

The idea was a huge hit.  The students loved it and attacked the organizing of it with zest and zeal.  They created the name Cyclebetes and decided teams of 1-12 would participate … the aim being as many teams as possible.  In the end each team was to attempt to raise $1000, our goal being $50,000 from the one school.  

Cyclebetes, version one, exploded! Thirty five teams, a student driven organization and $82,000 raised!

This was it. The true legacy.

In 2009 Accu-Chek Cyclebetes officially became a charitable business.  In 2009, over 20 schools will participate in the spin-a-thons, a tandem relay engaging thousands of participants will relay over three weeks across Canada.  A relay team of ten will begin the process of moving Cyclebetes into Australia and a small relay team of ten will cross the United States stopping at local high schools to unveil what a father’s promise has yielded.

In 2009 the rock dropped in the ocean and the small ripples are beginning to spread.  

In 2009, Accu-Chek Cyclebetes will bring the promise back into the public eye, helping everyone realize that they can have an impact on the world.  In 2009 the start of something absolutely huge has created roots.

Goal: 10,000 schools, millions of riders, cure juvenile diabetes.

The promise revolution is alive.  What’s your promise?

*   *   *

Thanks for letting me host your post, Willie!   

Posted by Kerri Morrone Sparling at 08:31 AM | Permalink | Comments (2) | TrackBacks (0)

Thanks to my friend Landileigh at Landileigh's Little World for guest blogging today.  (Hopefully, as you're reading this, I'm drinking some kind of tropical concoction from a coconut and laying out on a beach.)  She's one of the kindest souls here in the diabetes community, and I'm proud to host her post.  Take it away, Landi! 

*   *   * 

I want to thank Kerri for allowing me to be a guest blogger on SixUntilMe! She is one of the main reasons for this post, and I hope to explain why.

So often we are asked about our “diabetic team.” Videos and brochures you receive from your doctor’s office always talk about your “diabetic team.” They explain that this is your endocrinologist, your nutritionist, your CDE, family, and friends. I believe that these days my team also includes my Online Community.

My online community began with the Diabetes 365 project in October of 2007. The support from the other photographers that were participating, through comments and then through the mail, was outstanding. Soon I was to learn that their support was not just relegated to this particular project. There were blogs, and social networks, and messaging. It was reaching out to me in all sorts of mediums of communication.

In February of 2008, I met my first diabetes online community member, then another, then another. These online people were now no longer figments of my imagination, but flesh and blood who responded in kind, like true friends.

At any given moment in time, there is a D-friend online, either on Twitter, or Facebook, or Juvenation or one of the other social media outlets. Someone to commiserate with, laugh with, cry with, or just to hold your hand – virtually. I value these friendships as much as I do the ones within my real life. They are real, just thousands of miles away.

Recently my dearest D-friend went on a vacation for a week. Far from time zones where we could really talk, I missed her more than I thought I could. I awaited for her return as if I was awaiting any loved one from an airport. During her time away from the internet, I knew that she was so much more than just a face/name on the internet that went away when I closed the lid of my laptop. She was in my thoughts, and prayers until I knew she was home safe and sound.

I love the D-OC and all that it stands for. The community of people that we are striving to become grows by leaps and bounds, and that feeling of no longer being alone in this crazy ass disease gets smaller every day.

If you have a chance, reach out to a fellow D-OC’er and give ‘em a virtual hug today. Since you are reading this, I’m giving you one right now too! Remember, we are all part of your diabetic team!

*   *   *

Thanks, Landi!  I can see the t-shirts now:  "Have you hugged a blogger today?"  For more on the power of community, check out my post on "Who Benefits From Patient Blogging?"  

Posted by Kerri Morrone Sparling at 08:30 AM | Permalink | Comments (6) | TrackBacks (0)

Hello from my cruise!  (Only sort of, because I'm loading these guest posts in ahead of time, so right now I'm home with a gray cat circling like a shark.  But I'm pretending to be on the cruise, and that's a nice thought.  Whoops!  Digression again.) 

Today's post is from Christine who blogs at By The Numbers.  Her son, Thomas, was diagnosed two years ago with type 1 diabetes, and she's offered to tell her story here at SUM.  And, as always, I remain in awe of the parents of diabetic kids.  They're truly amazing.

Two years ago, at age 5, our son Thomas was diagnosed with diabetes.  We were blindsided.  I knew absolutely nothing about this disease, treatment, long term effects.  Nothing.  That first night in Children’s Hospital the nurse told us TJ would be receiving his first insulin dose and I wondered aloud what form that dose would take – a pill?  How many doses until he would be over this diabetes thing?  We were planning on a Celtics game the next day - would be out of the hospital in time?  Seriously clueless.

One week later I was home, in a fog. I had a binder full of information, a list of appointments at the Joslin clinic, and pages of questions.  I was like a new mother again – too many questions, too few solutions.  When my babies were little, I belonged to a new mother’s support group.  The women in that group were a lifeline, and I am lucky to call them great friends ten years later.  In search of something similar, I began scouring the web.  I didn’t find support groups, but I did find heaps of blogs (SUM included).  Those became my first peek into life with diabetes.

Slowly, the care became easier.  The questions became answers, the treatment became an insulin pump, diabetes became a part of our life instead of a massive intrusion.  Less and less I found I wanted the answers for right now, more and more I wanted answers for the future.  Although none of us can see the future for our children, I can imagine a sports event, a sleepover, a first dance.  I can’t imagine an adolescent and adult life with diabetes.  What would it be like for TJ to play sports, go on a date, go to college, get a job, all with diabetes in tow?  It’s the desire to know the answers to those “long-term” questions that have driven me to become like a voyeur of adults with diabetes, staring in at the lives of adult (and adolescent) diabetics (or PWD’s). 

The first summer after Thomas’ diagnosis, when things were still quite fresh, we were sitting on the beach when I noticed a mother on a nearby blanket.  I was watching at first because she was pregnant and in a bikini – a fashion statement I was never brave enough to attempt.  But then I noticed the tubing of her pump snaking around her bikini bottom.  And shortly after she took a test kit out of a little makeup pouch, tested, and promptly drank a juice box.  It was amazing to me – I had just witnessed someone treat a low.  Sitting right there, without the big to-do that ensued in my house.  I wanted to jump up and scream to all my friends, “look!  That lady over there is diabetic, and more than that she is LOW!”  It was then that I realized I was being rude – staring in at someone’s private life.
 
So, in an effort to remain socially acceptable, I have curbed my initial voyeurism a bit.  But, I do allow myself a few peeks into the lives of people with diabetes.  Although I stopped reading most of the blogs I found (I did have to go back to work, after all) I became addicted to SUM.  Kerri (unknowing – I’m a world class lurker) became a constant source of information about life as a diabetic.  While pondering a management or logistical question I will often remember back to a post I have read.  Kerri’s blogs about sleepovers, for instance, allow me to see the possibilities for Thomas to also spend a night with friends.

The two adults I know find themselves the constant recipients of diabetes related questions (How much did you bolus for that?  Do you ever go low while you are teaching? How often will you test now that we just finished three martinis? What kind of pump do you have? How often do you change your site?).  When I am with them, they must feel as if they are under a microscope, but they are both gracious, kind, and caring individuals who have answered question upon question without so much as a sigh.

So far, I’ve been lucky.  Kerri continues to update her blog daily.  Those amazing adults don’t run when they see me coming, and they continue to share ideas, thoughts, and personal information.  I might not be able to know what TJ is going through, and I certainly can’t predict his future, but because so many in the diabetic community are willing to offer a glimpse into their own adult lives, I have a better idea.

*   *   *

Thank you so much, Christine!  (And hi to Thomas!)

Posted by Kerri Morrone Sparling at 09:00 AM | Permalink | Comments (6) | TrackBacks (0)

Hello from my cruise!  (Only sort of, because I'm loading these guest posts in ahead of time, so right now I'm home with a gray cat circling like a shark.  But I'm pretending to be on the cruise, and that's a nice thought.  Whoops!  Digression again.) 

Today's post is from Christine who blogs at By The Numbers.  Her son, Thomas, was diagnosed two years ago with type 1 diabetes, and she's offered to tell her story here at SUM.  And, as always, I remain in awe of the parents of diabetic kids.  They're truly amazing.

Two years ago, at age 5, our son Thomas was diagnosed with diabetes.  We were blindsided.  I knew absolutely nothing about this disease, treatment, long term effects.  Nothing.  That first night in Children’s Hospital the nurse told us TJ would be receiving his first insulin dose and I wondered aloud what form that dose would take – a pill?  How many doses until he would be over this diabetes thing?  We were planning on a Celtics game the next day - would be out of the hospital in time?  Seriously clueless.

One week later I was home, in a fog. I had a binder full of information, a list of appointments at the Joslin clinic, and pages of questions.  I was like a new mother again – too many questions, too few solutions.  When my babies were little, I belonged to a new mother’s support group.  The women in that group were a lifeline, and I am lucky to call them great friends ten years later.  In search of something similar, I began scouring the web.  I didn’t find support groups, but I did find heaps of blogs (SUM included).  Those became my first peek into life with diabetes.

Slowly, the care became easier.  The questions became answers, the treatment became an insulin pump, diabetes became a part of our life instead of a massive intrusion.  Less and less I found I wanted the answers for right now, more and more I wanted answers for the future.  Although none of us can see the future for our children, I can imagine a sports event, a sleepover, a first dance.  I can’t imagine an adolescent and adult life with diabetes.  What would it be like for TJ to play sports, go on a date, go to college, get a job, all with diabetes in tow?  It’s the desire to know the answers to those “long-term” questions that have driven me to become like a voyeur of adults with diabetes, staring in at the lives of adult (and adolescent) diabetics (or PWD’s). 

The first summer after Thomas’ diagnosis, when things were still quite fresh, we were sitting on the beach when I noticed a mother on a nearby blanket.  I was watching at first because she was pregnant and in a bikini – a fashion statement I was never brave enough to attempt.  But then I noticed the tubing of her pump snaking around her bikini bottom.  And shortly after she took a test kit out of a little makeup pouch, tested, and promptly drank a juice box.  It was amazing to me – I had just witnessed someone treat a low.  Sitting right there, without the big to-do that ensued in my house.  I wanted to jump up and scream to all my friends, “look!  That lady over there is diabetic, and more than that she is LOW!”  It was then that I realized I was being rude – staring in at someone’s private life.
 
So, in an effort to remain socially acceptable, I have curbed my initial voyeurism a bit.  But, I do allow myself a few peeks into the lives of people with diabetes.  Although I stopped reading most of the blogs I found (I did have to go back to work, after all) I became addicted to SUM.  Kerri (unknowing – I’m a world class lurker) became a constant source of information about life as a diabetic.  While pondering a management or logistical question I will often remember back to a post I have read.  Kerri’s blogs about sleepovers, for instance, allow me to see the possibilities for Thomas to also spend a night with friends.

The two adults I know find themselves the constant recipients of diabetes related questions (How much did you bolus for that?  Do you ever go low while you are teaching? How often will you test now that we just finished three martinis? What kind of pump do you have? How often do you change your site?).  When I am with them, they must feel as if they are under a microscope, but they are both gracious, kind, and caring individuals who have answered question upon question without so much as a sigh.

So far, I’ve been lucky.  Kerri continues to update her blog daily.  Those amazing adults don’t run when they see me coming, and they continue to share ideas, thoughts, and personal information.  I might not be able to know what TJ is going through, and I certainly can’t predict his future, but because so many in the diabetic community are willing to offer a glimpse into their own adult lives, I have a better idea.

*   *   *

Thank you so much, Christine!  (And hi to Thomas!)

Posted by Kerri Morrone Sparling at 09:00 AM | Permalink | Comments (6) | TrackBacks (0)

I'm in vacation prep mode BIG TIME (prep = mega spazzing), so I'm grateful that Tony Rose has offered to guest post here today.  Tony blogs over at Blogging Diabetes and has been living with type 1 diabetes since 1998.  He's been pumping for the last 3 years and is a diabetes advocate.  You can find Tony actively participating in the diabetes online community on Twitter (and you can also find me there, too).

He's got some insights on handling diabetes as the weather starts to warm, so take it away, Tony!

 

As we come up on the nicer weather, many different activities start happening.  People are getting out more, there’s yard work to do, traveling, vacationing and just more all-around outdoor activities.  With these activities come some important considerations in order to effectively manage diabetes and stay safe.

Activity/Exercise
With more exercise and activity from outdoor tasks and enjoyment, comes a new level of difficulty with controlling blood sugar levels.  The first nice day of Spring had me outdoors doing some yard work that had a dramatic impact on my blood sugar.  I didn’t need nearly as much of a basal dose and found myself eating just to keep my sugar up.  The temporary basal rate on my insulin pump comes in very handy for yard work and that round of golf (walking).  Also, it might be a good time to look at and test your basal rate’s effectiveness.  This can be dome by testing your sugar, fasting for 4 hours and then retesting to see if your blood sugar level goes up.  Consult your doctor to fine-tune that basal.

Traveling
I have had diabetes for over 10 years and travel frequently.  Over this time, I have never had a problem going through airport security with diabetes supplies, like syringes, pump supplies, insulin vials, and so on.  Never have I carried a letter from my doctor saying that I am a diabetic and require medical supplies.  Sadly, I think the security people are accustomed to seeing the supplies and don’t question it.  For more detailed information check out the American Diabetes Association’s web site.  A very important consideration that is important to make is taking extra supplies with you.  When I travel, I typically take 1.5 times the supplies I would typically need at home.  You never know when a flight may be canceled or you could be stranded on a deserted island.  I found myself in a situation early on with the pump where one infusion set had lost its stickiness and I was down to my last one.  Having no supplies left is not a good feeling and can be avoided by a little proper planning.

Glucagon
To this day, I have never needed a Glucagon injection because my sugar was so low I couldn’t eat/drink to bring it up.  What I found is that they expire after a year or two.  I know it’s not rocket science to figure that one out, but it’s kind of like, out of sight out of mind.  Since I have never used it, I don’t tend to think about it that often.  As the fire department recommends in regards to smoke alarm batteries, I would say to check your Glucagon expiration date every year at a minimum to ensure it’s ready if you need it.

Reading
I am a big fan of reading when I can and try to do a little every night in bed.  As the nice weather arrives, more people may be lounging outside, at the pool or at the beach.  One of my favorite things to do while vacationing is to read by the water.  I just finished an exercise where I solicited feedback from either people with diabetes or have a family member with diabetes on what they think is the best book related to diabetes.  Here are a few that you may want to pick up for when you have some down time.

1.    Pumping Insulin by John Walsh and Ruth Roberts
2.    The Mind-Body Diabetes Revolution by Richard Surwit
3.    Know Your Numbers, Outlive Your Diabetes by Richard Jackson and Amy Tenderich
4.    Sweet Invisible Body by Lisa Roney
5.    Cheating Destiny: Living with Diabetes by James Hirsch

Thank you for this guest post opportunity and keep up the great work on SUM!

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Editor's note:  Thanks for guest blogging, Tony! 

Posted by Kerri Morrone Sparling at 09:04 AM | Permalink | Comments (4) | TrackBacks (0)

Thanks to Jessica Hickok for offering to guest post today (I'm still in Tucson with the fabulous Dr. Val).  Jessica wrote a post about something that is definitely on the forefront of my diabetes mind, namely diabetes and motherhood.   Jessica offers up her thoughts on her diabetes pregnancy and advice on managing all the emotions.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 07:58 AM | Permalink | Comments (21) | TrackBacks (0)

I'm traveling to the Canyon Ranch Institute (and spa!!) this morning to give a lecture with Dr. Val of Better Health, so I've asked Adam Kaye to guest post today.  Adam and I have been corresponding by email for a while now, and I had the opportunity to meet him last week.  He's a type 1 diabetic and in medical school - so he understands what "in the trenches" means on plenty of levels.  

Take it away, Adam!

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First year of medical school, we learn mostly basic science: anatomy, physiology—we learn how things are supposed to work. Second year is when things start getting interesting.  We learn mostly pathology—why things don’t work. We’re finally faced with the reality that sometimes, those little twinges of pain, that mild nausea, can, in fact, be real disease. During my second year, I was convinced, at different points, that I had a brain tumor, two blood clots in my lung, and six episodes of appendicitis. You pretty much have to force your mind to write it off as what I like to call “Second Year-itis.”   

So, cue up December 1, 2005. It is my second year of medical school. I’ve just come back from Thanksgiving break. My parents had complimented me on losing weight, and made mention of the fact that I almost single-handedly took down one of their Poland Spring tanks. I’m sitting in a lecture entitled “The Presenting Signs of Diabetes.” As I’m sitting there listening to the professor’s description of polydipsia (increased thirst), polyuria (increased urination), weight loss, and fatigue, my mind begins to go into its usual “Second Year-itis” routine … only I can’t shake the feeling that this is real.

If you’re reading this blog, chances are you can fill in the rest of the story. My first diagnosis in medical school was in fact myself.

Now fast-forward to third year of medical school. Third year is easily the toughest year for medical students, both intellectually and physically.  You leave the cozy confines of the lecture hall for the sterile floors of the hospital to practice your newly-learned skills as a diagnostician. The work can be, at times, very rigorous physically, as well as intellectually. I am lucky enough to be at a school where our “overnight call” (read: staying up all night) is kept to a minimum, but the demands of many of my rotations meant very long, odd hours. On my surgery rotation, for example, I would be at the hospital around 5:30 am to round on patients. Surgeries would begin at 7:00 am, sometimes lasting well past lunch. Surgeries could be scheduled in the afternoon, too, meaning we would have to wait until the late evening to round on patients again. With so much to do, and so many hours at the hospital…well, not much time built in for diabetes management. As opposed to the regimented, strictly scheduled second-year routine I had spent 6 months getting accustomed to (my only 6 months as a diabetic, mind you), I was now flung into the chaotic, regiment-less world of a hospital.   

Our fellow Type 1’s can relate to the fact that the world doesn’t wait for us. The rest of the world doesn’t want to wait 15 minutes to eat—they want to eat quickly and get right into the next patient’s room to keep the patient queue in check. The rest of the world doesn’t want us to scrub out from a surgery to check our sugar, they want me to keep holding traction so they can see the whole operating field. The patient will be alarmed, even in a noisy hospital setting, by the BEEEEEEEEEEEEP of my Dexcom, and will be even more confused when I have to excuse myself in the middle of a physical exam to check my sugar.
   
Reading other Type 1’s experiences on sites like Six Until Me, I know I’m not alone. I know we all deal with the frustrations of a world not waiting for us, of a world that just doesn’t get it — a world full of “real people.”  As a medical student, however, I’ve been given a crash course in how to deal with them.

I can only hope my experience has helped me become a better doctor — to understand my patients’ diseases and how frustrating it can be to deal with “real people” on a constant basis.  As doctors, we ARE the “real people”—we don’t know, for the most part, exactly what our patients are going through—but I at least have a head start in my training towards understanding the patients’ side of things.

Editor's note:  Thanks, Adam!  And more guest posts coming in the next few weeks!

Posted by Kerri Morrone Sparling at 07:00 AM | Permalink | Comments (18) | TrackBacks (0)