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Posts from the ‘Psychosocial Support’ Category

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

Practice Turkey.

Chris and I are both from big families with piles of aunts and uncles and cousins at every birthday party.  Part of being part of a flurry of people means big holiday gatherings, and Chris and I are prepping ourselves to start hosting some of the holidays.

Problem is, I’m a terrible cook.  Or, better stated:  an inexperienced cook.  Cooking hasn’t ever brought me joy or satisfaction, and I’m not interested in the time it takes to perfect a recipe.  I cook for form and functionality (read: make sure my family doesn’t survive on garlic salt and overripe bananas), not for fun.  I’m not good at making the effort to learn.

But if we want to start hosting holidays, we need to learn how to prepare some of the main courses.  Which brings me to the Practice Turkey:

Practice Turkey is currently taking up residence in our freezer, and my goal is to use him to teach myself how to properly prepare a whole turkey.  (Sidebar:  Animal is in our freezer because Birdy is afraid of him, but refuses to let us donate him or throw him out.  She wants him in the house, but entirely contained.  So he lives in our freezer and has been there about a year.  I always forget that he’s in there, until someone comes over to visit, opens the freezer, and subsequently goes, “OOH!!”) In the next week, my plan is to practice my culinary witchcraft on Practice Turkey so that when we host holidays this year, I’m not in a huge panic because I can be all, “Oh, the turkey?  I know how to do that.  I’m all over that!”

I need to actually do it in order to make sure I can do it.

Same goes for technology hiccups in my diabetes management plan.  I use an insulin pump and a CGM (hellooooo, disclosures), and with that convenience and data comes an influx of autonomy and the sacrifice of my autonomy, if that makes sense.  The devices give me a lot of flexibility and freedom, but if I rely on them too heavily, I forget how to manage my diabetes on my own.

I need to be my own Practice Turkey, relearning the details of diabetes.  I need to make sure I know how to calculate a bolus, check my blood sugar regularly by finger prick, and finagle basal insulin doses if my pump ever breaks, or if I ever want to take a CGM break, or if my will to wear devices breaks a little.  And over the last week, I’ve been on a bit of a device break (thank you, winter skin issues), realizing once again that a refresher course on how to drive the stick-shift version of my diabetes (so to speak) helps me take better care of myself overall.  Taking an injection before I eat makes me think twice about the food I’m putting into my body, and also help me remember to pre-bolus (because it’s a process, not just the push of a button).  Using the treadmill instead of a correction bolus to fix a 180 mg/dL keeps exercise fresh in my mind.  3 am checks aren’t always necessary, but doing a few of them helps me spot-check my overnight basal rates.  I appreciate my devices, but I needed a reminder on what they do for me, and how to continue to do for myself.

Practice (turkey) makes perfect.

[Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, share what your favorite word is, or just say hello.  And thanks for being here.]

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.

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.

That Escalated Quickly.

After downloading and uploading and reloading all my device data to Diasend, I’ve seen the Big Picture, and it kind of blows.

For a good, long clip, things have been completely fine.  In range most of the time, not too many gross lows, and highs were classified as an extended 180 mg/dL, with symptoms to boot.  Well done!  Diabetes on point!  Celebrate by shoveling snow!

But a hiccup here and there have given way to a slippery slope of fuckery.  My two week average a month ago was fine.  My two week average yesterday was gross and not at all where I want it (and know I can have it).

I’m glad I’ve looked at my data, because I’m not sure I would have noticed just how dodgy things had become.  (And a quiet but still curmudgeonish thank you to the need for a flurry of paperwork in order to get my new insulin pump through insurance approval, forcing me to provide blood sugar logs and other data points in order to convince my insurance company that yes, I do have type 1 diabetes.)

I didn’t realize how much higher my two week average had become until I looked at it and recognized the need for change.  Two weeks for me makes a big difference, because it’s in that time frame where I make crappy tendencies into crappy habits.  Ignoring high alarms is okay for a day, but not for a week.  Forgetting to pre-bolus can roll by a few times but more than that equals out to crummy postprandials.  Carby food choices that are lackadaisically carb-counted brings on the blood sugar roller coaster.

Eff that noise.

Time to deescalate this.  Quickly.  Before it becomes as piled on as the three foot mound of snow on the back deck.

Missing Meter.

The initial search through my bag was kind of nonchalant.  “Where is my meter bag?”  Bright pink with a smiling bear on one side, it’s a hard bag to misplace, even in the seemingly unending abyss of my purse.

But the flurry of leaving the house that morning to catch an early flight left me mentally snowed-in.  I brought it with me, right?  I know I checked my blood sugar that morning, and I had a clear memory (didn’t I?) of pricking my finger on the plane after we had reached cruising altitude, so where the hell was my glucose meter?  I had it just a few hours ago?

“Where is my glucose meter?”

The search went from casual to frantic in a matter of minutes, when I realized that my meter bag was nowhere to be found.  Not in my suitcase, not in my book bag, not in the rental car.  No memory of where the hell it could be, and all the moments I’ve ever checked my blood sugar on a plane were melting together.  Did that happen today, or had I been working off info from my CGM graph all day long?

Just as Chris and I confirmed that my meter was, indeed, MIA, my Dexcom sensor alarm went off, warning me that my sensor was going to die in two hours.  And the “low battery” alarm went off a few minutes later on my pump, reminding me that it needed a new battery.

“Everything is breaking and I’m an idiot.  I’ve never, ever left my glucose meter behind before.  Ever!  On so many of my trips, I’ve packed an extra meter, but even on the trips where I didn’t, I still didn’t lose my meter!  I’ve never lost my glucose meter before, in like three decades with diabetes.”  I was rambling, but frustrated.  The device I needed most to properly dose the drug I needed most?  Missing.  Data crucial to my safe survival?  Inaccessible without purchasing a backup system.

(And, as luck would have it, I had just refilled my meter bag with a brand new bottle of 50 test strips and a fresh AA battery for my pump.  Reminded me of the time I replaced my car’s exhaust system, filed the tank up with gas, and then proceeded to total the car.)

Thankfully, finding a pharmacy that sold the brand of glucose meter I had strips at home for was easy enough.  (I didn’t want to have to replace the meter, again, when I got home.)  And thankfully, we have the means to purchase a meter and a bottle of test strips without insurance coverage.  But holy shit, I was shocked to see the sticker price for a bottle of 25 test strips.

“Forty five dollars?  For 25 test strips?  That’s bananas!”  I said the pharmacist.  “How do people afford these things without insurance coverage?”

She shrugged.  “They don’t.  They buy the CVS brand and the strips that go with that one.  Most people don’t pay for the top tier strips out of pocket.”

“But the accuracy is …”

“It’s what it is,” she said.  She finished ringing up the meter and strips (and AA batteries for the pump), bringing my grand total up over $100.  For a meter, 25 test strips, and batteries.

“This is the price for maintenance,” I said to Chris.  “For the stuff that keeps me healthy.  I can’t imagine what the cost would be to do more than “maintain.’”

After reuniting with a glucose meter, our trip continued on without issue.  But throughout the rest of the week, I thought about having access, and having the financial means to replace things I accidentally lose, and being grateful.  I thought about the Spare a Rose campaign and how far $5 goes.

This holiday season, I’m more grateful than ever for more things than I realized.

(And when we came home on Friday evening and I went into the bathroom, I saw my glucose meter sitting on the bathroom counter, halfway hidden underneath a hand towel.  Never again!)

 

Let Loose.

(Is it okay to let loose with a stream of consciousness sort of thing today?  I hope so.  My mind isn’t capable of anything else at the moment.)

I’ve been thinking quite a bit about the diabetes community.  So much has changed since the Internet started to populate with patient stories.  I don’t mean that in a “oh, the industry!” sort of sense, but more that the concept of “I am not alone with diabetes” has gone from hopeful to factual over the last decade.  I love the diabetes community.  After such a long gap between camp and finding online support, I appreciate the friendships – real and true – I’ve forged over the last decade.  To go full Jerry McGuire on the whole mess, they complete me.  I even appreciate the people I find prickly to a certain extent, because my interactions with people I don’t get along with help me grow as a person.

My feelings about the community are a weird contrast against diabetes itself, because the disease is not something I love.  I don’t appreciate it.  I don’t view it as a gift.  I view it as a disease.  So it’s a strange hybrid feeling to be so taken with a group of people anchored around a disease I would give back in a heartbeat.

(Oh hell yes, I’m in that kind of hug-everything mood today.  Wait until I cut-and-paste blooming violets and rainbows and doughnut rain up in this blog post.  It’s a combination of jet lag and hypoglycemia.)

By contrast, I haven’t wanted to share so much online these days.  I thought I was hitting a pocket of diabetes burnout a few weeks ago, but then I realized my blood sugars were fine.  I was checking my blood sugar at the necessary times.  I was wearing my devices and doing whatever was necessary to keep them, and me, up and running.  It’s a comfortable diabetes apathy that I’ve settled into, with results that are in range enough and diabetes control that falls within the guidelines well enough.  But I’ve wanted to shut the computer more and more lately.  Maybe it’s not diabetes but social media burnout?

Over the last few weeks, my life has been busy in ways that have nothing to do with diabetes.  I’ve been outside logging miles on the running trails, as this is my favorite time of year to run outside.  I have a new, comfortable routine of waking up before the rest of my family and making a pot of coffee, then reading blogs and emails while single-handedly killing the pot of coffee.  (Which means, by the time everyone else wakes up, I’m completely lit.)  We moved to a new town, I’ve been on the road for work, I’ve been investing myself in friendships and family, and I’m trying to spend more time talking to people I love instead of Tweeting into the abyss.  I made a conscious decision to pull back from the Internet and rethink how I felt about advocacy, especially in the wake of, for me, a less-than-fulfilling Diabetes Month.

And then yesterday I spent the day with the P4DC team and this welcomed wave of re-invigoration washed over me.  The conversations were diverse, but did close with a brainstorming session about Spare A Rose, which reminded me that the DOC isn’t about sharing thoughts and feelings without recognizing how frigging lucky we are.  We are lucky.  I feel like we found our footing, as an online community, by connecting with one another and comparing our good moments with our tougher moments, talking about our general lifestyle stuff and we got really comfortable in that space.  And then we started to realize, after connecting with our fellow and privileged peers (because if you’re reading this on a glowing screen, you’re luckier than most), that we live in a bubble of sorts.  We have nice problems to be managing, all things considered.  I think we came to realize that, as a community, and our ambitions and outreach started to step outside of serving ourselves.  Greater good sort of stuff.

That inspires the absolute hell out of me.  Changing our world takes a lot of effort and dedication and determination but good heavens, we can do this.  I am going through the ebb and flow of life and diabetes and all that comes with continuing to move forward but when I look at this community and see what we’ve done, and then consider what we’re capable of, the advocate in me rises from the ashes of burnout.  Like a phoenix.  (Or, probably  more realistically, a groundhog.)

Whether furry or on fire, my desire to be part of this vibrant community remains intact, intense, and appreciative.

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