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Posts from the ‘Psychosocial Support’ Category

What Does the DOC Mean to You?

This video is one of the last ones I did for Animas, but it’s one of my favorites because it features some of the friendliest faces in the Diabetes Online Community.

Much love to the folks who offered to share their perspectives on the diabetes community, and thanks for being part of the family.

If you are up for chiming in: What does the DOC mean to you?

Small Victories.

My only resolution for 2016 was to write more. Not necessarily here on my website, but wherever the words seem to come most comfortably. I have a few fiction ideas I’m fleshing out here at home, but blogging has always served as a way to unknot some of the thoughts in my head, mostly centered around my disease. Once my disease angst is unknotted (with blogging being the mental equivalent of gently tapping a fork against a knotted necklace chain until it goes slack and gives up), my mind feels better about diverting thoughts to things that are More Fun.

The problem with blogging is that it’s a public forum. Which means that I sometimes write with readers, or perceptions, or assumed judgments in mind. Sharing while simultaneously panicking doesn’t make for good writing, and more importantly, it takes away from the whole therapeutic/fun aspect of blogging. SO. I’m trying to blog like no one’s reading. Which means there may be more fractured sentences. And shit that doesn’t make the most sense. And probably less-than-lovely language, but oh well.

[ clumsy segue ]

I’ve been making use of Dexcom Clarity over the last few weeks and while it’s humbling to see my blood sugar graphs plotted out in full color folios, but there is a certain power to logging and reviewing my blood sugars.  (Huge sigh here because I make progress when I fastidiously review my blood sugars, which means I should continue to review my blood sugars, which I hate because is a tedious pain in the ass.  That’s kind of a diabetes theme:  tedious pain in the ass.)

Applications that actually DO SOMETHING USEFUL and don’t require extra work are my favorites, like the One Touch Reveal app that my Verio Sync uses and the Dexcom Clarity one.  Checking my blood sugar is mildly painful; reviewing data compilations should not be.

My numbers are improving, and with them, my mood.

This A1C is not entirely accurate (as it changes every few days when I review the PDF downloaded from Dexcom Clarity), but it’s very close to where my lab work pinned me, so I’ll fucking take it.

Also bringing much joy this week? These Tweets:

Unrelated to anything:  I found this sleeve smiling at me the other day:

And now it’s smiling at you.

A Fonder Heart.

Spending a few weeks offline was nice.  Good for me.  Removed that panic from, “What can I write today?” and replaced it with, “What can I do today?”  Stepping away from my website for the bulk of December was in efforts to shake the dust off my advocacy and outreach efforts by allowing a little room to not advocate or reach out.

Funny how that works, that absence thing doing weird things to the fondless levels of my heart.

When last Wednesday rolled around, I was excited to join the #dsma chat.  Emails are being answered with renewed excitement because I had a couple weeks to disconnect from things, making me appreciate the * ding * of email a little more.  Diabetes doesn’t feel like the narrator anymore; I’ve taken that role back for myself.

And doing non-diabetes things was good.  Traveling a bit with family and friends distracted from the constant hum of pancreatic chaos.  Christmas and New Year’s included hosting a lot of people in and out of our home, filling the space with voices and laughter and pleasant mess.  We made busted-up looking gingerbread cookies that ended up looking more like Super Mario Sunshine stars, but there’s joy found in Mario so yes.

I did a lot of laundry.  Yes, super boring, but superior therapy for me.  Things go into the machine horrible and come tumbling out of the dryer smelling fantastic and all fluffy-clean.  You can have your resolutions for 2016; I just want a pile of clean laundry to snuggle with.

I found one of those big, tupperware packing containers downstairs and it was filled with unused yarn.  The squeal I let out upon discovering this treasure was embarrassing, but I’d do it again because I frigging love yarn.  Currently dreaming up projects, while Birdy steals snippets from skeins to make wigs for her dinosaurs.

I watched my kid go bananas in a New Hampshire snowfall.  “MOM!!” and then EXCITEMENT.  After a winter where shorts have been more necessary than snowsuits so far, it was a beautiful thing, watching her scoop up handfuls of snow and lob them in her five year old rendition of a snowball.  The snow was beautiful.  (Remind me in February that I said that.)

… does this stuff sound boring?  MAYBE IT WAS but at the same time, boring felt nice.  Mellowing out is not my strong point, and neither is sitting still, but a concerted effort to not mentally and physically fidget myself into oblivion was such a stark change of pace that I liked it.

But now the holidays are over and it’s time to ramp things up again, keeping the pleasant mellowing on-call when necessary.  School is back in session and work is edging towards full swing here at home.

But the break was good.  Necessary.  And now my brain feels ready to do its job.

… can’t say the same for my pancreas, but that little bastard is a work in progress.

Opportunities to Participate in Research Studies.

The best way to change diabetes is to participate in diabetes.  Research is important because it shapes and informs how the medical community takes care of people touched by diabetes.  So when there is an opportunity to participate in a research study – especially one that doesn’t require any travel or a huge time commitment – the “Yes, I’ll help!” is hopefully easy to offer.

I wanted to share two diabetes research studies that are currently recruiting participants.  There are gift cards as payment, so there’s extra incentive.  Even though I know helping the diabetes community is incentive enough [insert group hug emoticon here].

And please share this information with others who might be interested.  Thanks!!

Opportunity No. 1

This explanation is short and sweet, and comes from my friend Sean Oser (and his research team).  They are look to find out more about the challenges and success you might have as a person with diabetes.  This study is for people living with diabetes and will take about 30 minutes to complete.  (You’ll be given a $20 Amazon gift card for participating.)  Take a look at the information below, and please take the survey to see if you are eligible to participate.

The survey can be found here:  https://redcap.ctsi.psu.edu/redcap/surveys/?s=HJEKP9MAD3

Opportunity No. 2

There’s a lot of talk in the diabetes community about artificial pancreases and bionic pancreases, but usually about the device functionality.  There haven’t been a lot of conversations about the potential emotional influence of these devices, and one research study is trying to change that.  Jill Weissberg-Benchell, psychologist and CDE out of Chicago, is hoping to have a focus group dedicated to that topic … which I think is very important because tech is terrific but you have to actually use it, and what it emotional factors keep you from using it?

I asked Jill to provide a little background on the study and what she’s hoping to accomplish, so that I could share that information with you guys.  Here’s what she said:

“Whether you have had experience with insulin pumps or continuous glucose monitors (CGMs) or not, whether you have participated in artificial pancreas trials or not, we would love to hear how you and your loved ones feel about the potential impact that automated insulin delivery systems (also called artificial pancreas or closed loop systems) could have on your daily lives.

The INSPIRE study team hopes to identify both the potential benefits and  the possible difficulties or barriers people may face in using such technology so that we can develop  ways to support people when these systems are available to use.  Your feedback will also be shared with teams around the world who are developing these systems so that they can integrate the feedback into their products before they are commercialized.

These focus groups, to be held at your convenience, using an internet-based video conferencing system, will involve one group for PWD and a separate group for their loved ones. In both groups, members of the INSPIRE team will help lead the discussions. These two hour meetings will give you the opportunity to share your thoughts about automated insulin systems in a casual environment and in a confidential manner.  We will mail each family a $50 Target gift card for their participation.

If you would like to learn more about the focus groups, please e-mail Jill and her team at: INSPIREstudy@luriechildrens.org or call at (312) 227-0330.”

Sleep Number.

I love sleep.

But I did not love sleep while Chris was traveling for work these last few weeks.  Mostly because I did not sleep.

From the middle of September to last week, my husband was away for work. He came home three times for 24 hours apiece, which meant that we missed him terribly. And it also meant that Birdzone and I held down the fort for two months on our own, which, for the most part, went very well. Now that she’s five and a half years old, Birdy is excellent company and we had fun hanging out with friends and playing games. (For the record, she can kick my ass at Uno Attack. And Crazy Mates. If you haven’t played Crazy Mates, look into it. Buccaneer Bob is quite the fella.)

Doing the school routine and maintaining my work schedule was one thing, but getting enough sleep was the most difficult, and somewhat unachievable, goal. The compounded effects of not getting enough sleep took their toll over the last two months.

The first week that Chris was gone, I had a low blood sugar during dinner that was pretty intense. My best friend and another friend were over for dinner, with their kids, so there were people in the house.  I wasn’t afraid that my low was going to leave my daughter unattended.  But this low was long and drawn-out, making my mouth and cheeks numb and leaving my brain unable to formulate anything even close to a coherent thought.  I remember sitting at the dining room table, my Dexcom receiver hollering, and I didn’t respond for a few seconds.  I’d already had a juice box and some glucose tabs and my dinner, for fuck’s sake, but the food wasn’t hitting as fast or as hard as the hypo, so I was floating around on adrenaline and scraps of glucose.

It went on for about 45 minutes, and afterwards, the low hangover was epic.

I didn’t realize this low had scared me so much until a few days later, when I realized that sleep was not happening.  I wasn’t able to fall asleep at night and I woke up several times throughout the night because I was paranoid about experiencing that hypo intensity again.  I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of my husband’s trip, because she was familiar with what the numbers mean, she knew how to respond in an emergency, and she lives five minutes away (and has a house key), so she could bust in if she needed to.

But even with the safety net of data-watchful eyes and technology that promised to buzz me awake if I fell out of range, shaking that hypo fear was difficult.  It stuck with me for the duration of Chris’s trip, alleviated only when I was either away briefly for work myself or when my daughter was sleeping at my mom’s house.  It wasn’t the actual low that scared me, but the idea that my child could find me low that kept me awake at night.

I wish this wasn’t the case.  I would love to end this blog post with a clever line with advice on how to manage these situations and the best ways to avoid fear of hypoglycemia, but the reality is that I slept through the night again once Chris was home.  And only then.

“It’s Diabetes Month … have you been advocating?” someone asked me in an email this morning.  And I realized I’ve been avoiding it a little, because diabetes has spooked me a little in the last few weeks.  I didn’t want to write about being nervous to go to sleep at night.  That didn’t feel like the “right” kind of advocacy (though there isn’t a “right” kind).

But then I realized that it was the truth.  And as much as I have accomplished despite diabetes, this disease influences my daily life in a way that far exceeds the seconds I spend checking my blood sugar or dosing my insulin.  I had trouble getting any sleep because I was scared.  Plain and simple.

The clever last line of this blog post?  I’m fucking thrilled, for a dozen reasons, that my husband is home.

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