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Earned.

This morning, the Joslin Clinic shared a photo of Dr. C Kenneth Gorman, who was awarded the Lifetime Achievement Award for living 80 years with type 1 diabetes.  He’s one of five people to have received the medal, and the first Canadian (eh?).

Here is this wonderful man, medal and all:

joslin medalist

[From the Joslin Diabetes Clinic Facebook page]

Dr. Gorman redefines what it means to “earn” a medal, in my eyes.  Thank you, Joslin, for letting us know about Dr. Gorman and to Dr. Gorman for inspiring me to keep working towards my 80 year medal.


Old School Blogging.

Over the weekend, I saw a post from Stephen with the meme in it and felt this moment of, “Oh hell yes.  Something fun and kind of mindless that doesn’t involve being on a soapbox.  Want.”  So I did the meme post and it felt fun.  Like I didn’t give a shit and wanted to write something for the sake of the fun and connection of it, not to say something Important.

Reminded me of old school blogging.  I started writing online in May 2005 and back then, there weren’t a lot of people reading so it was kind of a don’t-give-a-shit-free-for-all.  Write whatever you want.  Don’t even spell check it HA HA you REBEL.  (But then go back and spell check it immediately, also giving it a grammar once-over because I am a lifelong English major.  In related news, never end a sentence with a preposition because it will give you forever-hives.)  Get to know your peers without self-editing and self-imposed deadlines and self-consciousness.

I don’t know what’s happened to my voice in the last year or two, but it’s harder and harder to write some days.

“Is it writer’s block?” asked Chris.

“Kind of.  But it’s more like rehashing the same topic all the time and while there’s always something new to say because diabetes is that way, sometimes I don’t want to talk about it at all.  Keeping my head straight while managing the disease itself doesn’t always leave room for editorial.  Sometimes the best way for me to deal with some diabetes stuff is to work it out privately, you know?”

It’s hard to share things as I’ve grown older.  I stopped sharing photos of my daughter (and have never shared her name) on this website because I wanted to protect her privacy, but after a while, I realized I wanted to protect some of my own privacy, too.  I chronicled my engagement and wedding and move from RI to CT (and back again, all Hobbit-style) and pregnancy and, and, and … and now I’m not sure what I want to share, but diabetes-wise, I’m more and more inclined to share less.

Logging on to write about a wicked low blood sugar, for me, is an easier story to share because it’s encapsulated in that moment of the low.  Writing about how it feels and what I did to treat it is therapeutic.  But it’s a little more challenging to write about the aftermath of lows like that; telling the story of how fears of hypoglycemia permeate so much of what I do takes longer to tell.  Do I write about how I have trouble going to sleep for weeks after a bad low, because I think about how morning might be a stretch to reach? Do I even want my brain to take that journey?

Nope.  Sometimes that answer can be a big, fat nope.  Writing about that stuff is a complete fuckery of my mind.  While I have been grateful, at times, for the ten years of archived writing here on my website because it can be good for me to see how far I’ve come, other times I am a little bummed out that ten years of writing about diabetes could easily turn into twenty (but maybe not fifty because What If and that’s the shit that makes my head spinnish).  It’s been a really short and simultaneously loooong ten years of blogging, and the same goes for 28 years with diabetes.

I miss the old school blogging, quite a bit.  I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”  (I’m not sure that makes sense written out as it feels in my heart, but I’m resolved to not delete anything from this post, kind of proving a point to myself that I can write without considering consequence.)  I appreciate all of the new information being posted and the innovation and reporting that’s taking place but I miss the people themselves.  I don’t give a shit about bylines.  I care about people.  The people are still there and sharing, but there’s a lot of Agenda permeating the community and I kind of miss when it felt more organic and PERSONAL damn it and a little less structured.  I, personally, am losing a bit of my grip on what motivated me to blog in the first place.  I want to return to the real “why,” which was to find community and make the journey with diabetes suck less.

So what’s the point?  The point is that I liked writing that post this weekend.  It’s the first time I’ve written (or at least listed) without thinking too much over the past few months.  The second time I’ve written without caring for consequence is today.  I’d like to return to that kind of blogging, for at least a while, because it feels good.  Fun is also a thing, and I want more of that.  Especially here on my website, where I’m proud have built my online nest.  Better than trying to create something “perfect.”  Perfect isn’t a thing.  Reality is, and this community has forever been rooted in reality.

The reality of life, of life with diabetes, of an imperfect life with an imperfect pancreas and an imperfect mouth that curses often but please forgive me for saying fuck so often.  It’s a curse of a curse.

Happy Birthday, Dr. Seuss!

Happy birthday to Dr. Seuss!  He’s always been one of my favorite writers to read, recite, and then parody as needed.  In homage to the good doctor on his birthday, I’m revisiting a poem I wrote called A Human’s Resilient, One Hundred Percent! Because we are resilient, damn it.

*   *   *

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

Four Things.

I stole a meme from Stephen, who stole it from Jeff, who stole it from Scully.  (This is an exercise in content theft.)  I haven’t done a meme in ages and am drinking half-caffeinated coffee this morning in an effort to cut back on the amount of caffeine I take on, so I’m meme’ing in hopes of waking up my brain in full.

Four names people call me other than my real name:

  1. Zippy (since dLife)
  2. KSparl  (since being married)
  3. Mom (since giving birth)
  4. Six (since blogging incessantly)

Four jobs I’ve had:

  1. Banker
  2. Service writer at a car dealership
  3. Editor
  4. Writer

Four movies I’ve watched more than once:

  1. Momento
  2. Buried
  3. Dead Poet’s Society
  4. The LEGO Movie (because I frigging love Vetruvius.)

Four books I would recommend:

  1. Me Talk Pretty One Day (David Sedaris)
  2. The Princess Bride (William Goldman)
  3. Middlesex (Jefferey Euginedes)
  4. A Walk in the Woods (Bill Bryson)

Four places I’ve lived:

  1. Rhode Island
  2. Connecticut
  3. Rhode Island
  4. (As a native Rhode Islander, you do realize we don’t “move” out of the state.  We move to different parts of the state but we don’t leave.  It’s against our culture as a people.)

Four places I’ve visited:

  1. Berlin, Germany
  2. Dubai, UAE
  3. Melbourne, Australia
  4. Cobh, Ireland

Four things I prefer not to eat:

  1. Olives
  2. Raw onions
  3. Oranges (sidebar:  I like to eat oranges, but I loathe peeling them and then having the orange peel smell remain on my skin.  That skeeves me right out.)
  4. Boogers

Four of my favorite foods:

  1. Panna cotta
  2. Iced coffee
  3. Persimmons
  4. Reisling

Four TV shows I watch:

  1. The Good Wife (I miss Knox Overstreet)
  2. Scandal (I want a good, solid wine cardigan)
  3. Orphan Black (The halter bra from episode 1 is amazing and I am in hot pursuit of it.)
  4. Key & Peele  (“I said biiiiitch …“)

Four things I’m looking forward to this year:

  1. For the effing snow to effing melt
  2. Birdy’s 5th birthday party
  3. Friends for Life in Orlando
  4. Touring Fenway Park (I gave birth at Beth Israel Deaconess Medical Center up in Boston, and babies born in that hospital receive a tour of Fenway Park when they turn five years old.  See above about Birdy’s 5th birthday and then insert a loud “SQUEEEEE!!!”)

Four things I’m always saying:

  1. “Eat your eggs.”
  2. “Where’s my meter?”
  3. “I need to check my calendar.”
  4.  ”I love you.”  Because I don’t think you can say that enough.

Have a meme?  Leave one.  Need a meme?  Take one.

Arrival and Departure Times.

Yesterday, I checked in at the Joslin Clinic in Boston and saw this screen on the wall:

“Are those boards new?” I asked the woman who was checking me in for my appointment.

“Which ones?” she said, acknowledging the on-going construction in the waiting room.

“The ones that look like they’re from the airport.  The arrival and departure boards for the doctors.”

“Those are new.  It helps keep people from asking when their doctor will be calling them in,” she said, scanning my insurance card.

In my twenty-eight years as a patient at the Joslin Clinic, I’ve never seen anything that noted how on time or late my doctor was running.  I remain a patient at Joslin because they have been taking good care of me and my diabetes since I was seven years old, but it is admittedly an all-day affair to make my appointments.  Driving in from Rhode Island takes about two hours, all told.  (Driving home, depending on how late I leave the clinic, could be a three hour endurance event, thanks to New England traffic on 95.)  Most of the time, I wait a significantly long time to see my doctor, but she doesn’t make me feel rushed when I’m in the office with her.  Usually, once we’re in her office, the wait seems justifiable because it’s clear she cares about her patients and doesn’t simply shuffle them out the door once the *ding* goes off.

My endo appointment yesterday was at noon, but the paperwork I received before the appointment asked me to show up at 11.30 am, so I structured my morning to pull into the Pilgrim Parking Lot at 11.15 am and be in the waiting room just before 11.30.  (I don’t make a habit of being late because there was one time I was fifteen minutes late due to traffic and they cancelled my appointment, so I’m paranoid and now perpetually early.)

My endo, according to the arrival/departure board was ON TIME.  Which is good, because I was also ON TIME.

After my pre-appointment work up, I waited in the waiting room to be called for my appointment.  As scheduled by Joslin, I had an endo visit at noon and an eye dilation at 1 pm, which the woman who scheduled my appointment on the phone said would be more than enough time between appointments.  At 12.15, I still hadn’t been called in to see my endo.  The board said ON TIME.  At 12.25, I was starting to get a little antsy and had my logbook and list of questions in hand so that I could get going as soon as my endo was ready.  When I was called in at 12.30, I called the board a liar because it still said ON TIME but things were not ON TIME and now I was going to be RUSHED in order to make my second appointment.

I have pockets of being upset about diabetes, but on the whole, I’m usually pretty okay.  But waiting for doctors and appointments and being on hold with insurance companies and having to have stupid fucking tests for c-peptide to confirm whether or not I have type 1 diabetes so that my insurance company will cover an insulin pump … this sort of thing makes me bananas.  Diabetes management on a day-to-day basis takes up significant brain space, but it’s necessary so I do it.  Sitting in a waiting room for an appointment that I was ON TIME for but the doctors are not turns me into a ball of rage.

I’m glad I have an established history of reasonable communication with my endocrinologist, or she would have thought I was unhinged.  I was so angry by the time I was called into the appointment at 12.30 because I knew that I only had 28 minutes to hash out six months worth of diabetes-related concerns (after she did the required hearing of my heart, checking of my thyroid, testing my feet for nerve damage, etc) and then run downstairs to the eye clinic for my dilation.

To make matters more frustrating, the c-peptide test that I had done was not in her file.  It was missing.  “I will find this,” my endo said, shuffling through the pile of papers on her desk.  “I will email the team now and have them follow up with your lab this afternoon.”

“This is making me crazy, and I feel bad complaining about it to you, but this is not cool.  The board says ON TIME and yet we’re just now in the room, and instead of being able to talk about what needs to be talked about, you are being forced to chase down paperwork for a lab I’ve already done to prove I have type 1 diabetes for a stupid insurance company.  And I have thirteen minutes before my eye dilation appointment downstairs.”

The look on her face was one of understanding.  She nodded, and I wondered what kind of boxes she was required to check throughout the day.  How many patients was she required to see?  How often are the patients ON TIME, or prepared with log books and questions?  How many times is my endo put through a discussion about what insurance companies do or don’t cover, when that is not her job?  My journey with diabetes is forced, but hers was chosen, and there are moments when I want to thank her for making this her life’s work.  And then I want to throw a rock at the arrival/departure board and shatter it into a million pieces because that day, it was just another, “Oh, what a good idea and this will really help patients!” but instead it’s another savvy-looking tool in place to keep patients sitting still and not asking questions.  “Yes, your doctor is ON TIME.  Look at the board.”  What is the point of this board if it’s inaccurate?  Just to look patient-centric?  How about being human-centric and requiring that patients and doctors alike be on time and prepared for their appointments?  And what are my options if the doctor is running terribly behind?  As a friend commented on Facebook:  “So what are the ramifications if it says ‘WICKED LATE’ next to one doctor’s name? Do you get to choose, as the patient, to leave and not be charged?”

We burned through my appointment in record time – my weight is down, A1C is fine, plan is to continue to be tuned in to diabetes – and then I was shuffled off to my eye appointment.  The eye appointments always take a long time (dilation) but that appointment was uneventful as well, with my macular edema holding steady where it was back in May (I’ll take “not worse” and “staying stable” as a good sign).

And then I was off home.

Later in the evening, the phone rang.  It was my endocrinologist, who was calling to say that the c-peptide test had been found and the results were in.  “This won’t be a surprise to you, but your c-peptide was undetectable.”

“So you’re saying I have type 1 diabetes?”

“Yes.  Just like we thought.”

“Well I’ll need some time to adjust to this new diagnosis, but thank you for letting me know.”

She laughed, and we exchanged other pleasantries before getting off the phone.  Birdy was sitting at the kitchen table, staring at me while I was talking with my doctor.

“Mom, you have diabetes?”

“Mmm hmmm,” I said absently, handing her a napkin while she ate her dinner.

“But mom, didn’t you already know?”

“I already knew.  But now it’s official.”

She looked at me with a mouthful of food.  “Well that doesn’t make any sense and anyway, you knew the whole time!”

I respect my endo.  And the Joslin Clinic.  But holy hell, yesterday’s healthcare excursion was an exercise in frustration and to boot, now I have diabetes officially, after all this time of not wondering.

 

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

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