September 30th, 2010 by

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I’ve written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I’m still comfortable with the term "ePatient."  I find it to be empowering – another "e" word – and having it as part of my identity makes me feel like I’m part of a very strong, very forward-thinking community.  Having lived with diabetes for … forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it’s part of my health."  Empowered, electronic, encouraged, engaged … ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health – or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

Source: Six Until Me.

September 30th, 2010 by

Elaine Massaro believes in the power of treating people with diabetes in group settings.  She’s an RN and CDE who was recently honored as 2010 Diabetes Educator of the Year by the American Association of Diabetes Educators (AADE) for her success in “improving the effectiveness and efficiency of diabetes patient education by using this (group) [...]

Source: AmyT

September 29th, 2010 by

Conferences are a good time and a great networking opportunity, but there’s NOTHING like hanging out with fellow PWDs (and PWD caregivers). 

Thanks for coming out last night, everyone!  It was awesome!!!

Source: Six Until Me.

September 29th, 2010 by

“If this book were a video game it would be rated ‘Mature’ for a sprinkling of explicit language and for deadly serious subject matter.” — statement kicking off the “Preface” of Wil Dubois’ latest book, Beyond Fingersticks Whoa. While I might have to disagree with Wil’s idea of “sprinkling” (I lost count of how many [...]

Source: admin

September 28th, 2010 by

Today’s guest post comes from another Barton Camp alum – Savannah.  (And, for the record, I first met Savannah by seeing her name over and over and over again on the Boathouse walls.  I had to meet the girl who had gotten her name up on the beam over the door.)  She’s living with type 1 and is also a self-proclaimed artsy-fartsy type, and I’m happy to have her guest posting about finding inspiration. 

Though sometimes I might like to think it, diabetes doesn’t physically affect just my pancreas. Depending on my blood sugar, it affects anything from my ability to feel my body, to my emotions and coherent thoughts – basically anything from my head to my toes depending on the day and mg/dl. Hence, not surprisingly, it also has a large say in how successful (or not) my artistic endeavors turn out to be.

It’s pretty safe to assume that everyone has experienced the car crash known as god awful singing at some point – most likely multiple points – in their lives. Whether your congested friend is belting, “If love is a labor I’ll slave till the end” during a late night drive home, or your strep throat, metal-in-a-blender, voice makes passerby cringe as you drive around in your convertible, it happens to the best of us. And even though no one (well, no normal people, at least) can quite hit those blasted high notes in “Happy Birthday” it’s still frustrating, especially when you’re in one of those slap-happy, sing-songy moods where all you want to do is dance around the house and sing at the top of your lungs (and be the recipient of your neighbors’, who are playing golf outside in the backyard, looks).    

To me, what’s even more frustrating is singing (when I’m really inspired – usually between the hours of 1 and 4AM) with ketone-breath – what I call that dried out, spongy, sugar-coated, just heavy cotton-mouth feeling my mouth and tongue get when my blood sugar is, let’s just say, not below 300. Ironically, it is quite hard to hit the right tones when you’ve got the ‘tones, and high blood sugar + inspiration = time to whip out the audio editor.

Now, I’m no superstar singer, but I am a writer, photographer, montage-maker, friendship bracelet connoisseur, doodler, you name it – I’d like to think, pretty artsy-fartsy. I write poetry that I convert to songs and, when I am really inspired, I write lyrics.  I like to pretend I play guitar (even though I only know a couple chords), and realistically, when you have original lyrics and music, you’ve gotta mesh the two together and sing.

Problem is, when my blood sugar is high or rapidly rising, I sound like Miley Cyrus at the 2009 Grammy Awards – like screechy metal, and when my blood sugar is too low, I can’t even see the guitar strings clearly let alone strike the right ones. (I also can’t write anything of remote, coherent, intelligence and practically don’t have eyes for seeing let alone the “photographer’s eye.”) In a nutshell, doing what I love doing involves ensuring that my blood sugars are stable and in range.

I have absolutely no idea if it’s biological or psychological – or if the two are connected in any way – but I’ve found that I can focus, sing best, and harness inspiration into producing an essay, song, photo, etc most successfully when I am slightly dropping from, for example, 140 to 90, or even 120 to 100.

With college-essay season in full gear, and being in the middle of recording for the first time, I’ve gone to extra lengths to be on top of my ‘betes (trialing the Omnipod being one of these lengths.)  And if you were to ask me my recipe for a successful artistic endeavor, I would give you a nice little note card to put in the location where you work your magic (for me, I write, sing, and play guitar in my bathroom – weird, I know, but best acoustics in my house):

Savannah’s Recipe for Producing Whatever Your Diabetic Artsy Fartsy Little Heart Desires:
(Makes 1 serving)

1 ¾ cup inspiration
4 cups water
¾ focus
2 ½ cups emotion
1/3 sinus health
¼ cup sugar **

** Depends on your sensitivity factor

Thank you so much for writing this, Savannah.  I’m printing out that recipe and sticking it to my mirror.  And for anyone reading, what’s your "recipe" for staying inspired?

Source: Six Until Me.

September 28th, 2010 by

Whenever I learn something new (diabetes-related), I like to share it here. Because I figure if I hadn’t heard about it — as I’m sniffing the air for D-news over the years — then lots of other PWDs out there probably haven’t heard about it yet either. Today’s tidbit is about that famous diabetes activist [...]

Source: AmyT

September 27th, 2010 by

(Post title edited, thanks to input from @kelsse.  )  I had a conversation with a fellow PWD a few weeks ago.  She was leading a support group for younger girls with diabetes, but she was having some trouble feeling in control of her own diabetes.

"I’ve been like 260 all day long.  It’s hard to feel like a good role model when you’re in such crap control.  I don’t feel like a very good advocate these days."

And her comment stuck in my head and rolled around in there like a bingo ball for about two months.  This morning, as I was testing my blood sugar before heading downstairs to make a bottle for the BSparl biscuit, it dawned on me that her question is probably one that every patient blogger struggles with at any given time.  How do you put on a brave face when you feel like your disease management is in a tough spot?  How do you tell people to take control of their own diabetes when yours is roaming around unsupervised?  How do you advocate when you feel like a schlep?

For the last week and a half, I have been a walking diabetes disaster.  I’m still wearing the pump and the Dexcom and I’m aware of my disease, but I’m not managing it.  It’s managing the hell out of me, though.  I’m not proactively nailing down any blood sugar trends, but instead am chasing random highs and lows that I KNOW have a pattern somehow, but I haven’t motivated myself to really plot the numbers and find their rhythm.  I can count my daily finger sticks on one hand (pun sort of intended).  Overall, I’m treading water instead of making real progress towards actually making changes.

How many times can I say "Tomorrow is a new day"?  I feel like I’ve been singing the same tune for weeks now.  Is this a patch of diabetes burnout, brought on by diabetes obsessiveness in pursuit of the healthy pregnancy?  Whatever it is, I’m definitely in it and having a very hard time getting myself out.  The problem is priorities.  I have myself fooled into thinking that taking care of the baby, unpacking the house, and continuing my consulting work is more important than diabetes management.  What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn’t ever as well done as it should be.  My health needs to come first.  Not last.  Or second to last.  Or finishing somewhere in the bottom five. 

It’s hard to come online and admit these things.  I wish I could say that I had the baby and then bounced right back into fantastic control and excellent health.  But I’m struggling.  A lot. It’s frustrating and I’m overwhelmed.  I don’t make a habit of lying to you guys.  So even though I am trying to make changes, I’m feeling challenged. 

"I don’t feel like a very good advocate these days," my friend had said that day.  But what makes her a good advocate is that she tries.  Every day.  And that’s what makes the entire diabetes online community such a strong and honest source of support.  It’s not comprised of a bunch of people with "104 mg/dl" winking back at them on their meters and a plate of chicken breast and baby spinach leaves smiling in low-carb contentment.  We’re a bunch of real people writing about our real experiences with this disease.  And I’m so glad for that because I’m looking at string of several rotten diabetes days in a row, all lending themselves to settling in my brain and making me feel defeated.

You guys make it easier to dust myself off and get back on the wagon.  (Even though it is speeding by like the Acela.)  It’s hard to advocate when you feel like a schlep, but it does feel good to be honest.  Honesty helps fuel advocacy.  And it also helps to be supported by people who really get it.  When this community helps lift us out of our respective diabetes burnout phases, it makes all the difference. 

… coffee helps, too. 

Source: Six Until Me.