Sunday, May 15, 2011
The final prompt for Diabetes Blog Week 2011 is to chronicle what you've learned from participating in the blogging community - either since discovering the DOC or during this week of blogging.
My initial thoughts drift to all of the new voices I've discovered this week that I had never had the pleasure of hearing before.
People like Haley (an inspiring teen with diabetes blogging at Naturally Sweett), Mike (of What Some Would Call Lies), Penny (of A Sweet Grace) and Reyna (hilarious - of Beta Buddies) and Joanne (who is a part of a local group of D-parents I stalk and I had no idea was behind Death of a Pancreas until I found out she won Chick-Fil-A mom of the year and I put two and two together (and got mor chikn)).
As a voice teacher, discovering new voices is both my work and my pleasure. Every single voice is unique - actually having a mappable, traceable vocal fingerprint that is unlike any other voice's that ever existed.
That always blows my mind when I think about it in terms of singers.
But when I think about it in terms of D-bloggers, it warms my heart.
Each of us has something to share and there is space enough here in the big blue DOC to share it. All week, we read one another's stories, made each other laugh and cry, and offered big, sloppy low blood sugar kisses and finger-pricked high fives.
We're here. Each of us. Coming out as health activists, real people living with a very real though invisible disease. And we become more united with events like this.
We took the time this week to knock on our neighbors' doors and borrow a cup of...um...poison. Yeah. For cookies...made with poison.
Smooth CGMSailing and Flatline Glucoasters to all...and to all a good night.
Saturday, May 14, 2011
Friday, May 13, 2011
Today's prompt is a twist on asking ourselves about the awesome things we've done DESPITE diabetes and instead asks us to consider what awesome thing we've done BECAUSE of diabetes.
In the whirlwind of real life meetups I've had, fundraising walks, my journey into d-blogging, and online sharing via twitter and forums, it's easy to tick off a list of memorable moments that coming together with other diabetics has brought me. Moments and friendships I would not have shared were it not for this common interest that brings us together.
TuDiabetes.org - as an administrator, helping to keep the community running smoothly for the last three years. I can honestly say that I wouldn't have been involved were it not for the big D.
I joined the community in June of 2008, just before the 18th anniversary of my diagnosis. I was newly married, wanting desperately to be given the green light to get pregnant, and my insulin pump warranty had expired and I needed info on what else was out there. The Diabetic Online Community (DOC) was precisely the kind of pool I needed to splash around in.
I quickly jumped in with both feet, sharing experiences, talking insulin pumps and pregnancy planning with members across the globe. The first people to comment on my profile wall to welcome me I now consider some of my dearest friends. I'd never imagined that an online community could feel so warm, so easily navigable, so family-like.
Within two months, I was asked to be one of the first admins on the administrative team. Working side by side with Manny, Andreina, Kristin, Jeff, & Landi, we began to add structure to the way the site was moderated and maintained, learning as we moved forward - from our mistakes and our successes.
As a member, I shared trials and triumphs, posted photos and artwork, wrote poetry, mourned losses.
But as an admin, I was given a unique opportunity to keep my community SAFE, uphold the values that made me want to be a member there, keep threads friendly and keep content fresh.
Fast forward to 2011. I am now the lead administrator, senior member of the team (with the exception of Manny), and I'm the frazzled mommy of a toddler. Hundreds of messages fly through my inbox every week from our team of admins and discussion moderators. I don't think the community has any concept of how much we communicate behind the scenes.
My team has been amazing - past and present members included. Their perspectives, their leadership, their judgment...we've managed to strike that delicate balance of quality full-time commitment from volunteers with limited time to give because they are managing their own families, careers, and yes, their own diabetes.
And then there is our fearless leader. I admire Manny Hernandez to a degree I can't express. He is big brother, listening ear, source of information, social media guru, and ALL HEART rolled into one extremely likable person. Reading the way he consistently reflects the values of our community in the way he responds to members' concerns strengthens my resolve to give back to the community in every way I can.
And what I have done - and I won't claim to have done it alone - is to help streamline what our team does for the community everyday. I create how-to documents, answer technical questions, and handle training of new team members. I have been instrumental in creating and maintaining a message template of the many different kinds of notifications we use in contacting members in violation of our terms of service. I've helped orchestrate the hierarchy of the admin team, including how admins rotate through moderation responsibilities and how we document violations and contact members.
I'm fiercely protective of the admin team. When our decisions are challenged or our motives questioned, I make sure that our team is united and that we clearly articulate our position. Any one of us might be speaking from the anonymity of the Red Hand, but I'm always confident that it's said with one voice. Always reflecting Manny's vision. Always reflecting TuD's values.
This has been one of the first times in my life where I've really been part of a team. And it's a team with diabetes at the heart of everything we do. Our decisions aren't always well-received, but they are always well-intentioned.
I have the opportunity to draw from my strengths with the written word - be it carefully crafted diplomatic responses or snappy shutdowns - and my strengths in leadership (I'm definitely a "decider" - and a cranky one at that).
Diabetes brought me there. And it's because of how that community has improved my life with diabetes that I'll continue to serve with loyalty. It has been an awesome opportunity.
"Where your talents and the needs of the world cross, therein lies your vocation."---Aristotle
Thursday, May 12, 2011
I hate the time you take out of my day - out of my conversations, my getting ready to go somewhere, my meal prep. I hate always having to step away to deal with your crap.
I hate the energy you zap, how you peppered my pregnancy with your nuisances, how I feel chained by the ankle to your regimen. Test, treat, test, treat. The second I stop paying attention, you take the wheel and drive us over a cliff.
I hate the way you sneak into my quietest moments and yell "Surprise!" as you interrupt me with your pump errors and low blood sugars and loose infusion sets. Whether I'm rocking my daughter to sleep or teaching a voice lesson or performing a recital, your intrusions are never welcome.
You're a damned expensive disease - whether it's the insurance, the doctors, the drugs, the technologies, the accessories, or the medical supplies, I remember reading once that I can expect to spend a third of my income on you each year.
I hate feeling high. That unsettling, cotton-mouthed, nauseating, sleepy feeling combined with the rage of fight-or-flight stress hormones that make me unreasonably aggressive toward the people I cherish.
I hate the second and third lows of the day. I hate feeling like I'm constantly slapped down in my place, reminded of my vulnerability, thrown back on the floor any time I try to get up. I hate not being confident to walk ten minutes in any one direction because I don't know if I'll be able to make it the ten minutes back without a low blood sugar. I meet diabetics who are athletes, who run marathons, who play sports. Me? I'm afraid to walk to the park with my toddler.
I hate the way people without diabetes think they know what my needs are, what my diet should be, what my history must have been. I hate the way the media has painted it as a disease we deserve.
I hate when my blood sugar is 441 and I don't know whether it's because my pump malfunctioned, my insulin went bad, my site came loose, that soda wasn't diet, or I miscalculated lunch. There is rarely a simple explanation for the worst days.
I hate fearing what feels like the inevitable. Wondering when it will strike out of nowhere. Waiting for the other shoe to drop. I hate how you hit my friends, one after the other, with neuropathy, retinopathy, heart disease, essential tremors, etc. I wonder when I'll piss you off enough to make you hiss and snarl at me with the worst you've got.
I hate how you claim a stake in my identity - as though you and I are symbiotic, as though I needed you here to be all I am now. I hate that each of the scenes of my life have had you pressing your face to the window, knocking your insistent knock like a pesky neighbor who can't be ignored. I struggle to define myself with you there in the shadows.
And I hate that.
Wednesday, May 11, 2011
Day 3 of Diabetes Blog Week (#dblogweek) asks us to consider the lighter side of the big D - those funny, embarrassing, or ridiculous moments that diabetes has brought into our lives.
I had trouble with this one.
When I "oops" as a diabetic, it's usually a pretty big "oops."
Oops. I left my insulin in Germany and boarded an 8-hour train ride to the Czech Republic for the weekend.
Oops. I suspended my pump during a low and forgot about it until 5 hours later when I started vomiting. During Ryan's voice lesson.
Oops. I didn't refill my pump cartridge before my singing gig and fainted in front of 800 people while singing because I felt so nauseated from the skyrocketing blood sugar.
I know I've had genuinely funny moments, too, though.
There was the time my cat was on a mission to defeat my vibrating Cozmo while I was in the shower.
There was the time I participated in the ADA walk and was so busy chatting it up about diabetes that I walked into a fire hydrant and busted up my shin. Funny if you know my dad is a firefighter.
Or the time (this last Spring Break) when I dropped into the 40s at a meetup of D-parents and they all started whipping out bananas and glucose tabs - every flavor I could imagine. (There is no better place to go low than in a gathering of D-parents.)
But the one that jumps out at me was when my boobs beeped.
I was a junior in college and was being inducted into a prestigious honors society. My essay was one of only three selected to be read aloud and I was receiving a special award along with my new membership. So I was pretty dadgum proud.
My no-frills parents and I were seated at a banquet table with an associate provost and a vice president of the university.
In the middle of the room.
And my Minimed 508, nestled fairly discretely in my cleavage, decided that its cartridge was in urgent need of refilling.
For those of you unfamiliar with the MM 508, when it was empty, you knew. Everyone in a two mile radius knew. It screamed. Progressively louder. Six beeeeeeps in succession. And there was no silencing its beeeeeeeeeping until you'd refilled it.
My first instinct was to try to muffle it.
I pawed at my breasts with the grace of an 8th grade boy.
Heads turned. My boobs squealed.
I don't remember how I got it to stop. I know we didn't run back to my dorm room. I know I never carried pump supplies on me back then, in the spring of 2001. I vaguely remember going out to the bathroom. I'm guessing I stepped away, yanked it out, and removed the battery. Or maybe I just ripped the whole infusion set out and stuffed the pump in a purse, hoping it would hush.
I'm sure I came out and finished a big dinner with a smile on my face and no bolus on board, trying to appear elegant in an environment that felt far too uppercrust for my modest upbringing.
I went on to deliver my speech that night and impressed everyone when the microphone died and I used my vocal training skills to project the rest of it without a mic. I remember getting to shake hands with the university president.
I know that when I look at the pictures from that night, I remember that I felt sick and high the moment they were taken...
...But I felt like that a lot of the time, to be honest.
My college days were not wild, misspent, or noncompliant, though my then-endo often accused me of as much.
But my A1c was over 9, my blood sugars were high all of the time, and I didn't have any support.
I didn't know an entire blogroll of people who would have groped their own boobs if they heard a loud beep at the dinner table.
Tuesday, May 10, 2011
The second prompt for Diabetes Blog Week asks us to write some kind of letter. The recipient can be real or fictitious - an endocrinologist, a pump or meter company, diabetes itself - or you can write a letter to yourself as a younger diabetic.
You know, my very first venture into the D-OC was my husband emailing me the link to Amy Tenderich's Open Letter to Steve Jobs in 2007.
I was in righteous agreement with her, shaking my head affirmatively as I considered how out of date and out of touch the technology behind our insulin pumps and meters and continuous monitors was.
Just last year, in a dinner with some engineers from Abbott concerning the Freestyle Navigator CGMS, I remarked how important I felt a dedicated backlight button was to a device like a CGM. The engineers seemed puzzled.
"How would you like it if every time your phone rang in the middle of the night, you had to sleepily figure out a complicated key sequence to get the backlight to turn on so you could see who was calling?" I asked.
"Oh," they answered.
Similarly, I described all of the other user-friendly options we wish we could see in our devices and they seemed dumbfounded. Timestamped data on the onboard graphs, a test strip port light, range enough that you can use a device while naked, battery life meters that actually measure actual battery life, and...most importantly...meter accuracy. Yes, meter ACCURACY - something companies compromised over a decade ago in the name of faster testing results.
I'm fed up with meter companies' mediocre attention to detail and lack of empathy for their patient customers. (Probably doesn't help my mood that I was on the phone fighting with Abbott yesterday morning about the Navigator CGMS's interminably indefinite "inventory interruption" that has had my transmitter backordered for over a year.)
So here is my letter.
Dear CGMS and meter engineers,
Do you know that I take a different dosage of insulin for a blood glucose value of 136 mg/dL than I do for a 145 mg/dL?
But that's not statistically significant, you reply.
Not to you maybe.
If your meters can be as much as 20% off of lab values (and more in some cases) and I have to base my dosing decisions upon incredibly loose data, how can I ever hope to achieve "normal" control?
If my blood sugar is actually 120 mg/dL and your device tells me that I'm 161 mg/dL, I inject insulin into my bloodstream that my body can neither use or dispose of and then I go low.
Will my medical team blame the meter I used? No. They will tell me I must not be reporting something or that my basal rates might be off or that I didn't wash my hands thoroughly before I tested. They will actually seem puzzled and ask, "Why did you go low here?"
It's never your fault, meter company, is it? You fly your little butterflies and American flags across my tv screen, brag of faster (but less accurate) results and new bright color options for my meter, tell me that coding is my biggest annoyance (really?), and that I can test from my arms (MUCH less accurate). You have smiling rock climbers, fishermen, grandparents...all with blood sugars of 104 mg/dL.
But you and I both know we can't rely on that number, don't we?
Monday, May 9, 2011
It's the 2nd Annual Diabetes Blog Week...and Sweetly Voiced's first annual attempt at it. Coming off of the 30 day Health Activist's Writer's Monthly Challenge, one single week of d-blogs sounds breezy!
Our first prompt challenges us to celebrate what we learn from bloggers with a different perspective on diabetes than our own - such as a type 1 learning from a type 2 or a type 2 learning from a parent of a PWD (person with diabetes).
In honor of Mother's Day yesterday, my mind naturally drifts to a certain mother, blogger, and D-mom I know - one who inspires me with her advocacy and her devotion to managing her son's diabetes - Lorraine of This is Caleb.
I have been following Lorraine's blog for some time. Not only is Caleb an inspiring young man meeting every challenge of his diabetes - first adorably, and now admirably and bravely - but I can appreciate Lorraine's perspective now as a mother myself.
I will admit that I have often had a contentious relationship with parents of type 1s online. As a teacher and a former child with diabetes, I often insert myself into their forum threads with the self-righteous belief that they need to hear my perspective as an adult who has come through on the other side. It's not always taken well. *laughs* It's why I don't venture into the CWD forums and why I volunteer very infrequently with my local JDRF chapter.
I don't even know why I am so impatient with these folks. They are going through hell - especially after a recent diagnosis. But I grow tired of talking in circles about how we just need a cure and I start getting preachy with them about how they need to focus on helping their child live with the condition today.
Maybe it's because that's the only side of the coin my mom ever let me see.
My own mom ROCKED the D-mom role. She was a dosage-calculating, food-measuring, teacher-conferencing powerhouse of strength and confidence.
Or at least that's what she led me to believe.
In reality, my mom sobbed behind closed doors, stalled letting me get my driver's license, and slept uneasily.
I need to just butt out sometimes and let these parents grieve and cope with the disease as they need to. As a parent myself, I need to respect their right to feel whatever they feel.
I am still shaking from reading D-mom Hallie's account of the Scariest Night of Her Life. I could have written something similar about watching my infant daughter have a febrile seizure back in December. Sweetie's wasn't D-related, but it doesn't matter. What a patient's parent sees and feels deserves respect, too. Helplessness. Fear. Questions.
Seeing how Hallie and Lorraine and other D-moms grapple with the small trials like insulin choices and the huge ordeals like 8-day stomach viruses or D-related seizures makes me wonder what my mother would have blogged about 20 years ago. Probably my DKA. My A1c's that hovered in the 13-15% range for years.
Lorraine - and other rockin' D-mom bloggers - have helped me change how I relate to parents of PWD. I consider them to be loving, proactive, empowering activists for diabetes awareness. And I think they should be celebrated on Mother's Day and during Diabetes Blog Week and the rest of the year, too.