Disruptive, Unique, Beautiful and Diabetic

Are you still out there, readers? I assume that you are. I've remained quiet in my little space here. Why? It's hard to say. There are a plethora of reasons.

People are saying that blogging is dead; long live blogging.

Every blogging site is promising a "beautifully designed" and "unique" and "amazing" blog/site/whatever. But content is always king, right? I should give you some content to read.

Over ten years ago, when I started Dorkabetic, we (the Diabetes Online Community) were all blogging away, meeting each other via comments sections and daily readership. Now the DOC is so huge I can't keep up. I remember when we all started using Twitter, and now the world *is* Twitter. And Instagram. And...Snapchat? I don't have Snapchat. I'm being an old, crotchety Xennial about it. 

{Author's Note: I should probably learn Snapchat. Give me a good reason to start?}

I am looking at some big diabetes changes on my personal horizon. I want someplace to talk about them. If you've just found me, or if you've been following me forever, I hope to see you around. 

I want to talk about paperwork. I want to talk about insulin pump choices. I want to talk about my perspective. I want to talk about...the Freestyle Libre if I get one? I want to talk about geekery as it relates to diabetes.

Can we do this? Can we start again? Are you with me?

Good.

National Poetry Month, Diabetes Edition.

Aside from the spacing/kerning that makes me twitchy, after who knows how long, I finally wrote a poem about diabetes I'm mostly pleased about. It's freeverse. It's meant to be performed [if I like it, maybe I'll video?] aloud. I originally posted this to Facebook, but have since taken it down so I can share it more widely (and hopefully more copyrighted-ly) with you.

to Anyone Who Has Ever Said "Needles!..."

I just blink pleasantly as you finish,

Because I know your monologue by heart:

"Ohhh, I don't know if I could ever do that.

Needles are the worst! I'd be so afraid!"

I'm not here to belittle a legitimate phobia,

But I am also jaded enough to gag

On your sentiment.

If you required a needle

Injecting anywhere under your skin

To stay alive each day

You'd do it.

After 27 years of this,

On days your body doesn't feel

Like a walking pincushion,

You can feel like a healthy person,

Or a husk starving for water and sleep,

Or a ravenous scavenger, devouring anything in sight to stay alive.

When you wake with the sun,

Sometimes you remember to thank some unknown

That you woke at all,

Or you can thank a juice box meant for a toddler,

Thank that bag of old Skittles from your purse,

Thank your giant water glass, a vial of insulin, a small syringe..

You prepare for your work day,

Stuffing medical necessities in a commuter bag,

No matter how short the commute.

Load a series of devices that chart and graph and calculate

In with your belongings, alongside the phone, maybe the smart watch,

And try not to feel like a collection of numbers running for a bus,

Don't grouch at the lady in line for artisan coffee

Who tsk-tsks at your selection of an artificial sweetener.,

Don't give your officemate a speech

When she offers what she believes to be body-positive encouragement

Because you joke about the carb count of the free bagels.

When you visit your doctor,

Notice how you feel like a walking data set.

Daydream in the waiting room

About the other data sets sitting nearby.

Who has better numbers?

Do insulin pumps dream of electric islets?

Because you love math geeks, do you want them

To analyze your standard deviations when you can’t look?

Is it hilarious that you suck at tipping

And algebra and doing your taxes

But you can rattle off a correctly calculated ratio

To decrease your blood glucose after eating?

When the mother of a child with diabetes

Calls you "brave", just warmly smile

And share something positive.

Is there bravery in acting as your own organ?

Is it brave to function as a normal person?

Smile. Say something nice to her.

Don't let on there's a tingle in your toes

And extra blood vessels somewhere in your eyes.

Pretend you don’t have a pillbox tucked away

With pills to encourage your serotonin and dopamine.

They don't want to hear this.

They see your 27 years of what you consider “good enough”
As a miracle, a celebration, sometimes you might feel it too.

27 years of the day's tiny stabbings

Produce a quiet pride in the right light,

27 years of unwanted but well-meant concern,

27 years of advertisements that the cure is 10 years away,

27 years of other people's opinions

On your meals and your body and your medication doses

And you haven't punched a single person?!

Maybe it's bravery after all.

Never Knowing

There's a person I follow on Twitter, and he's one of those people who posts at least two Tweets on the hour, every hour during the day.  He's got some good information and interesting personal stories, he likes to focus a lot on the oft-ignored effects of diabetes on mental health.  All good, right?

I suppose.

However, this guy makes me question myself all the time.  Many things that happen to me that I chalk up to depression, anxiety, or career-related ennui could potentially, according to things he says, be merely diabetes related.  Maybe this is supposed to serve as a relief to some people, but for me I am finding this unnervingly stressful.

If I snap at someone for no reason, can I just blame my bad blood sugars?  If things seem to be bothering me more than they would bother a normal person, can I just blame my diabetes?  Do I even need to see a therapist at all when I feel overwhelmed?  Would a perfect A1C just make me a happier person overall?

If what you say is true, Mr. Twitter Man, have I been doing it wrong all of these years?  

Because that's every diabetic's favorite thing to hear, right?  That we're doing it wrong and if we just stop doing (xyz) everything will be so much better.

I am irritated because I know there has to be some truth in what this guy is saying, and I'm sure he's not intending to make his fellow PWD feel bad about themselves.

There is a reason that the 'Unfollow' button exists, but what am I losing or gaining by clicking it?

Halloween Knight

Glucolift glucose tabs are running their annual Gluc-or-Treat campaign. They say they'll take all Halloween-related photo entries, even mentioning that you can put your supplies in costume.  What do you get for sharing a pic?  You get a goodie bag of Glucolift treats!  You know how much I love free stuff.  It's a slow day today, so I may have fashioned some things out of office supplies...and so I bring you:

THE ADVENTURES OF SIR NOV O'LOG!

Sir Nov o'Log's blue circle helmet offers him protection.  He comes from the kingdom of Bantingbest, in the chilly north.

Sir Nov o'Log versus the Monster of Unknown Carb Count!  Can he use his wit and experience to solve the Monster's carbohydrate riddle, or will this end in certain disaster for our hero?

(I'm not going to lie.  Sometimes this is how the battle seems to turn out.  VICTORY FOR FRUITOPIA!  Better try swapping out that infusion set, Princess Tandem.  Take a correction via syringe or pen while you're at it.)

Sir Nov o'Log has vanquished his carb-y foe!  The Monster of Unknown Carb Count is slain, and Hannah's BG will not be awful after all.  Thanks for saving this fair maiden, brave knight.

Always keep Sir Nov o'Log, Sir Hum o'Log and their noble steeds Lantus and Levemir at the ready to battle those diabetes dragons.  (Note: Sir Regular and the other knights of the Insulin Table are less outspoken, but still handy.)

Happy Halloween, everyone!  Remember trick or treating is just as fun for kids with diabetes, and the whole point of Halloween is costumes and fun.  Enjoy!  

Invisible Illness Awareness Week 2013: I Choose to Be Bold.

Flawless selfie. Aww yeah.

I can get up on a stage and spill my guts.

I can put my original writings up to the judgement of random audience members.

I can blog candidly about living with diabetes.

I can pull off bright lipstick.

I can wear stripes even though I'm over a size 16.

I can confess to you that I wear over a size 16.

I can go out with no makeup.

I can use my skin as a canvas.

I can love whomever I choose.

I can crack jokes about having chronic illness.

I can make one hell of a baked ziti.

I can be an administrative assistant.

I can be a writer.

I can be an artist.

I can be a communications professional.

I can have friends across the massive spectrum of shapes, sizes, colors, orientations, tattoo patterns, hair colors, genders and sexualities, and they are all awesome.

I can hug with the best of 'em.

I can give myself an injection in a moving vehicle.

I can prick my finger and test my blood sugar at the table in the restaurant, because I'm prepared with a statement if somebody is uncomfortable.

I can often do better.

I can acknowledge that I'm only human.

I can live just as well, and possibly just as long, as someone without invisible illness.

I can do this on my own terms.

I choose to be bold.

D-Blog Week, Day 5: Freaky Friday

Friday:  Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

When we talk about Freaky Friday, are we discussing the Jodie Foster version or the Lindsey Lohan version?  Because in the end I'd rather be Jodie Foster.  Or Jamie Lee Curtis.  Can I just switch with one of them in real life?  I know there are quite a few jackasses out there who feel feminism is like a disease.

This is a tough question to answer.  My initial thought was that just straight-up hypothyroidism might be simpler than diabetes.  Of course, only having to pop one pill every day sounds quite appealing, then you go out to the internet and read that it has its own complications.

What about a chronically high cholesterol level?  Heart disease is pretty strong in my dad's side of the family, so I don't think that's any better either.

So then I started to think, what if I didn't have diabetes, but had only one of the other issues I've got now?  Yes, I probably wouldn't have worried that my tachycardia was diabetes-related, but would that be more or less comforting?  Sometimes I am pretty sure that tightening up my glucose control would lessen some of my mental health issues.  But would I be more depressed and anxious without being able to attribute some of it to diabetes?  As if to say, "I am having this mood swing out of nowhere, I must be bipolar!" instead of "I am having this mood swing out of nowhere, maybe I forgot to bolus for my afternoon snack!"

Is one chronic disease better to have than another?  I don't really think so.

If I were to personify my diabetes, would I give it a hug and say, "Hey buddy, I hope you stick around forever because I love you"?  Never.  But if I could, would I leave diabetes for something else?  I'm not so sure. 

Actually, I think I just made a decision.  I might trade diabetes for being a Never-Nude.  I might just accept having to wear a bikini in the shower if it meant I never had to worry about blood sugar levels, insulin boluses, or carb counting ever again.

D-Blog Week Day 2: We, The Undersigned

It's D-Blog Week...join your favorite diabetes bloggers as we write about/share/mouth off about different diabetes-related topics all week.  Links and learn more at: Bitter-sweet Diabetes!

Tuesday: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

A PETITION FOR GREATER SEXINESS AMONG PEOPLE WITH DIABETES

(I'm pretty much addressing the grownups here.  D-Moms & Dads, I'm not trying to make your kids grow up too fast, but face it.  Your kids will be my age one day.  This is just to say...we're all grownups at some point.  We'll be okay.)

We, the undersigned, hereby believe that people with diabetes are just as hot as people without diabetes.  Many, many people with diabetes are in successful domestic partnerships and marriages.  Many people with diabetes have rich, interesting dating lives.  We are tired of seeing various postings on the internet that reflect self-doubt over body image or worthiness of loving relationships, just because of having diabetes.

Say what you will about Halle Berry, she does look pretty good in a bikini.  Recent scientific studies have shown that people with guitars have greater sex appeal, so what about Crystal Bowersox?  And there's always the cutie-patootie from the days before One Direction, Nick Jonas.  There's delectable chef Sam Talbot. There are actors, musicians, athletes, racecar drivers, and Supreme Court justices, all with their own brand of hotness.

The point we are making is that people with diabetes are cute, sexy, wonderful, loveable people. 

We, the undersigned, agree that:

...we have the right to walk out on any date who would consider our diabetes a dealbreaker.

...we can be confident happy people who ask for what we want in bed, even when what we want is a glass of juice because we're going low.

...it is not a burden to check a BG or disconnect a pump before getting intimate.

...diabetes alone is no excuse.  You can have a love life/sex life just the same as anyone without diabetes.

...there are challenges we may face as people with diabetes in relationships, but people in any sort of relationships have challenges.  Always remember you're not alone.

...PWD are allowed to be just as kinky as people without diabetes...and we're not talking bent cannulas or insulin pump tubing.

...we are dateable.

...we are worthy of finding partners we can love and trust.

...we can be just as gorgeous and confident as any celebrity.  We can strut in our favorite non-diabetic shoes.  We can get nekkid with an infusion set on.  We are just as smiley and charming as anyone.

...we're sexy, and we know it.  Wiggle, wiggle, wiggle, wiggle, wiggle, yeah.



PS--How dare I leave out the intellects, artists, authors and scientists with diabetes?  You guys, statistically speaking, are probably the ones I'm most attracted to.  Sexy smarts, grrrrowl.

Can I put poetry in motion for PWDs?

So a couple of weeks ago I was honored to be featured on Kelly Writers' House Live, airing on Philadelphia's WXPN 88.5fm.  I'd like to thank my friends at Apiary magazine for inviting me to appear, and I'd like to thank Michaela Majoun for her gracious hosting.  Also a big thanks to the University of Pennsylvania for having such an awesome Writers' House and a great bunch of people in it, including Alex (I could have her name wrong) who was running the show.

It'll be archived online soon enough, and I'll let you all know where you can go listen once it's up.

But all this poetry stuff has me thinking--is there a way to combine writing with helping people with diabetes?  Has anybody done writing workshops for PWDs?  Do you think people would be interested?  I am seriously contemplating how to facilitate this one; I think it could be a cool exercise in patient empowerment.

So much brainstorming right now about so many different subjects!  This is merely one thing that's on my mind, but I figured a great thing to bring up among my diabetes community compadres. 

Thoughts?  Suggestions?  Any takers?  Maybe?

Have a great weekend, all.

Eye Can't Fight This Feeling Anymore

If you want to know the annual doctor's appointment that gnaws at my nerves the most, it's not the gynecologist.  It's the eye doctor. 

Coming in second or third to the stories most people will tell you about their family member who didn't take care of their diabetes and lost a foot are the stories of somebody's uncle/aunt/brother-in-law (etc) who went blind. 

I never feel like I know what my eyes are doing there.  Are they just sitting in my skull, happily doing their jobs?  Is there more to it than that?  Retinopathy, sounds like the most insidious of all diabetes complications.  It just lurks in the backs of your eyeballs until your eye doctor discovers it.  Sometimes I have a bad blood sugar day where my eyes refuse to focus properly.  Near the end of a bout with what may have been the norovirus earlier this year (still not sure what illness it was exactly) paired with an infection, I became super photosensitive very suddenly.  Light literally hurt my eyes when I got out of bed in the morning.  I was terrified.  What would the eye doctor find in three weeks?

Luckily, the photosensitivity faded with my illness and the completion of my antibiotics.  It could have been a symptom or a side effect, not sure which. 

Two days ago, I was at my annual eye checkup.  I had a new doctor, who was a nice guy in his mid-40s.  He checked my vision, and while I need to change my prescription slightly, he encouraged me that I was looking great.  Even with my ridiculous nearsightedness that I've had since kindergarten, I can still be corrected to 20/20 vision.  There are new glasses in my future.  I'm excited and also sad to see these glasses go.  After that quick exam, I was given drops.

He said my pressure looked great, which is reassuring given the history of glaucoma in my family, but then I had to wait for my eyes to dilate.  That's the moment I tend to get a lump in my throat.  I paused in my mind to reason with my retinas.  Okay, guys, you're feeling okay, yes?  Maybe?  Please? 

Sitting in the chair for the moment of truth, I asked, "So be honest, tell me how they look?  I've been diabetic for 22 years now.  I've been told that you can tell I'm diabetic by looking at them but there's nothing to worry about."

"They look great!" he exclaimed.  He paused to look at my chart on the computer.  "Actually, they look better than last year.  I can see one micro-spot in your right eye, but it's practically nothing.  And like I said, it's even better than before."

Sometimes I feel like I will forever be dodging bullets, despite my best efforts.  It's always comforting to know I can fight another day.  My eyes are 99.9% perfect.  After 22 years with type 1, I feel happy just knowing that.  I feel lucky.  And of course, I always feel like I could do better. 

So for now I hope that eye squirrel stays friendly.  Or that he's maybe more of a transient eye chipmunk, or a degu.

And so November begins...

It's Movember!  It's NaNoWriMo and NaBloPoMo!

It's National Epilepsy Awareness Month!

And most importantly, for most readers of this blog (as well as the author), it's National Diabetes Month.

JDRF declares the first day of November to be T1D - Type 1 Day.  Wego Health has also declared this month to be National Health Blog Post Month.  Whew!  That's a lot of stuff.  It's in the spirit of Wego Health's post suggestions that I start this month.  I am going to aim to follow them for all 30 days, but we'll see what happens, eh?

Wego says one of the Day 1 topics is "why I write about my health", and what better day to say something than Type 1 Day?

I write about my health because it helps me immensely to be a part of a community that really "gets it".  Having diabetes isn't easy.  Keeping it in control isn't easy.  If you are the type of person who doesn't need to talk about what's going on in their life in order to feel happy, you probably would never feel the need to blog about anything.  I am a writer.  I am compelled to write about everything--what I ate for breakfast, who I have a crush on, what my blood glucose is right now.  Many people do not understand that latter fact.

The people who understand the most about having Type 1 Diabetes also have it themselves, and while some of these people live near me, many of them don't.  Many of us took to the internet in the hopes of finding community, insight, and the occasional bit of advice.

I write about my health because sharing my story with diabetes is cathartic for me.  I love storytelling, both real and fictional.  There are days I feel my life revolves around telling stories, and if I can't involve diabetes in these stories I am, in essence, denying a part of myself.

I actually wrote about this a bit here as well.

If you are reading Dorkabetic for the first time, welcome.  These are my stories.  They are sometimes better when accompanied by a beverage of your choice or a bowl of ice cream.  Stick around for more.

Should've Cured Me at Least Twice Now

So here's what's been on my mind this week:  The Cure.  (Not this one, either.)

I've had type 1 diabetes for just over 22 years now.  It seems that every person I know who has been touched by diabetes, patients and caregivers alike, heard one line as part of their diagnosis story.  That line is something like, "But it's possible there's a cure about ten years down the road."

Whether the person with diabetes is 16 or 65, it seems like we've all heard it so many times.  I'm here to make a confession today:  I'm cynical about it.

Today, I am 30-and-a-half, and in the past week, there was obviously a great press release from Dr. Denise Faustman's lab at Mass General, touting that the promise of Type 1 Reversal could lie within a generic vaccine for TB that has been around for years.  I saw the story run on multiple news outlets.  It gave me a glimmer of hope for a second, just like news of artificial pancreas research gives me momentary glimmers of hope.

Reuters News tried to take a balanced approach by stating that Dr. Faustman's research has at times been controversial, though this could be an important finding.  They quoted a doctor from Columbia University Medical Center who stated the findings may just be "a bit of magical thinking".  The story informs us that the generic TB vaccine only seemed to restore insulin production for a week in trial patients.

How am I supposed to believe there could be a cure in my lifetime if medical professionals don't see the validity in each others' research?

In fact, the Reuters story continues about Dr. Faustman and her project: "JDRF rejected her funding requests and circulated a 2003 letter from two of her colleagues at Harvard Medical School, casting doubt on her work and apologizing to diabetics for 'having their expectations cruelly raised' by stories about her research."

You know, haven't my expectations been "cruelly raised" for 22 years now?  Some people complain that we're living in the future and we still don't have flying cars, or we still haven't reduced our dependence on foreign oil, or President Obama hasn't magically waved his arms and created a job for every unemployed American.  I say, it's the future--and we still haven't cured type 1 diabetes!  (Or AIDS or HIV or cancer for that matter...)

What angers me about this news item about Dr. Faustman's lab and research is that this is a news story about science and research.  Aren't scientists supposed to keep testing their hypotheses?  If one scientist has some success in her hypothesis, shouldn't other scientists maybe try to refute or support one scientist's claims?  Just because Dr. Faustman didn't win the JDRF seal of approval is no reason for people to give up on research that has at least worked some of the time.

Even if the Faustman Lab research doesn't lead to a diabetes cure, what if it made something that made managing type 1 a lot easier?  I'm insulin resistant.  I've tried Symlin, and it's made me feel icky.  I tried Metformin with my insulin, it produced some rather unpleasant gastrointestinal side effects as well.  What if something from the TB vaccine could increase the effectiveness of my injected insulin?  There were no adverse side effects reported in the study, apparently.  I'd try that.

Even worse about the news from Dr. Faustman's lab is a view that made me relatively irate regarding the pharmaceutical industry.  Bloomberg reported that, "[Faustman] tried to interest every major drugmaker in developing the vaccine as a possible cure for diabetes. All told her there wasn’t enough money to be made in a cure that used an inexpensive, generically available vaccine".

If pharma wants to be as involved with the patient community as they would like to be, they need to keep the interests of actual patients in mind.   That sentence there basically tells the world that if there ain't money to be made by it, pharma doesn't want to cure you or even try to if they can't do it on their own ridiculously-priced dime.

What about the artificial pancreas projects and the closed loop systems?  Maybe it's better to be a med device manufacturer than a drugmaker in this case.

Either way, none of this news makes me feel better about ever getting a true cure.  Having a fancy cyborg system that checks my blood and acts like my pancreas with minimal supervision from me does sound pretty fantastic right about now, but is the day ever coming that we've all dreamed about when we were first diagnosed?

You know, the fateful day when we get cover-up tattoos for our "diabetic" medic alert tats, when we have a massive disposal party for all our diabetes supplies, when we can eat a cupcake and have our body provide a bolus instead of our fingers and some stuff from a vial.

Here's where I'm cynical.  Maybe this could be an unpopular opinion around the diabetes online community, but why bother to sugarcoat it?  (Ha ha, puns.)

How do we expect to ever be cured when medical professionals can merely argue over what is the best possible tract?  How do we expect research toward a cure to get done when pharmaceutical companies (who have all the major money out there) won't fund the trials that are necessary to prove efficacy?

How does pharma think they are going to earn the trust of empowered patients when news gets out that they won't help the very efforts many of us have been praying for since we were young?

Are we going to see a cure within the next ten years?  I'm not so sure about that, but I've been given a lot of reasons to feel disappointed.  Maybe if someone can prove otherwise, I'd feel a little more sunny on a diabetes-free outlook.

(Also, I'm curious, has anyone out there seen any research on how the Faustman lab is doing it wrong?  This is the internet, surely someone must have heard something...)

D-Blog Week, Day 4: Fantasy Diabetes Device!

I would like to thank my favorite ninja, George, for making me laugh this morning with his fantasy device.  Little did we know, maybe our pals at Skynet Google are creating the glasses of the future which we are seeking!

I can think of all kinds of "fantasy" devices, like a tubeless pump that holds 300 units, a device that checks your blood sugar without any kind of poking, something that will enable me to wear my pump without bulk or strapping it under my boobs.  These are the kinds of things we all wish for every day.  A working pancreas.  A closed loop system.  A cure.  A CGM sensor that doesn't cost a zillion dollars.

But I am thinking fantasy here, people.  Seeing as this is DORKabetic, let's get overly geeky for a second.

Introducing...Diabetes Navi
If you've played Legend of Zelda, you probably know Navi as that annoying little sprite who follows you everywhere.  "Hey!  Hey!  Listen!" she says.  "Look!" 

Diabetes Navi would follow you around, keeping you out of danger, alerting you to the Dexcom alarm you've been ignoring for 20 minutes, nudging you to bolus for your carbs.  She may get irritating after a while, but she might also save you a lot of hassle.  She'd intuitively know when that barista put sugar in your latte instead of Splenda, when those test strips have expired, when your insulin has baked in the hot sun.  "Look!"  Suddenly, you realize your vial is cloudy.  She'd be really helpful when the d-moms and dads can't always be around, or if you're really stubborn like me about checking alarms. 

Plus, wouldn't it just be cool to have a glowing orb with wings that follows you around, looking out for you wherever you go?

"Hey, look!"
"Whoa, a stray kitten needs my help!  Thanks, Diabetes Navi!"
"Listen!"
"That drunk-looking dude behind me in line needs glucose tabs because he's actually having a hypo!"
"Look!  Look!"
"OMG LOOK AT THAT DEXCOM FLAT LINE AT 115!  High-five, Navi!"

Diabetes bonus: She's blue.

Geeky multiple-fandom bonus?  She can double as your golden snitch if you're into Quidditch.