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ConnecT1D Retreat: Sign Up NOW!

Last summer, when I was 17 1/3 months pregnant, I traveled to Seattle to take part in the ConnecT1D Retreat.  Despite being a round mound of hormones, I had an awesome time connecting with other PWD adults and sharing experiences.  It was put together by an amazing team of PWD leaders, and today, the Board President of ConnecT1D is sharing details about the 2017 conference.  

(And note:  registration ends on March 15, so register today!!)

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Kerri:  Hi Cassady! Thanks for making some time to talk. Can you let readers know a little bit about you and your connection to diabetes? 

Cassady:  Hi Kerri! A few fun facts about me: I enjoy plants but do not like to garden; gummy bears are best served cold so I keep mine in the refrigerator; my current binge-watching show is “Seinfeld”, and my two cats were in my wedding this past year when I married the coolest guy in the world. We created a special wagon covered in toole for them and my niece pulled it down the aisle—not as a flower girl, but under the official title of “Head of Feline Transportation: Ceremony Division.”

Also, I was diagnosed with type 1 diabetes about 22 years ago. As a teenager, I struggled quite a bit with T1D, both physically and emotionally. Despite having all the medical care I needed, I was labeled a “non compliant” patient who just couldn’t seem to get it together. I remember feeling so alone and overwhelmed with shame and guilt during those times. That’s when I came to see the bi-directional relationship between physical health, especially chronic medical conditions and psychological well-being. Luckily I started seeing a counselor, and discovered the power of emotional support and connection.

I decided to take my personal experience and combine it with professional training as a mental health therapist, and that’s what I do now! I help people with diabetes and other chronic illnesses address the psychosocial issues that, much like that awful bunny onesie Ralphie gets in “A Christmas Story,” so often show up uninvited. No one gets what he’s going through, but I bet they would if they had to wear one. I get it, because I, too, have worn the pink bunny suit.

Kerri:  Who hasn’t worn the bunny suit?  You’re involved with ConnecT1D. Can you tell readers what that organization is about and what your role is there?

Cassady:  I am the Board President of ConnecT1D, which is a nonprofit in the Pacific Northwest that sees social support as a vital part of type 1 diabetes treatment. That’s why we create social support opportunities for families, teens, and adults living with T1D. We do this by bringing people together for meet-ups, educational meetings, retreats, and lots of other fun programming. Speaking of which, I am also the Co-Chair of the ConnecT1D Adult Retreat

Kerri:  Good timing with that mention. The ConnecT1D retreat is coming up soon! What makes this event awesome?

Cassady:  The Retreat is an opportunity for adults living with T1D (partners welcome!) to get together to relax and connect with people who have a deep understanding of what life with diabetes is like. It’s great to be in a room where people are whipping out needles, talking about carb counts and you are not required to explain yourself when you mutter things like, “I’m high” or that when you say “basal”, you are not referring to an underrated garden herb. (Please see “Fun facts” in Question 1.) Inclusion can be life-saving. Isolation can be devastating.

Kerri:  I was lucky enough to visit last summer and hang out with the ConnecT1D team. The event was awesome. What can attendees expect from the 2017 conference? 

Cassady:  We will spend a weekend at the Clearwater Resort and Casino, just a 15 minute ferry ride from Seattle, WA. National and local speakers (who have T1D themselves, or a close connection to it) will lead workshops on a variety of topics promoting social connection and emotional wellness while living with T1D. Mike Lawson of the Diabetes Hands Foundation will be our keynote and he’ll talk about his own experience with and ideas for overcoming diabetes burnout. We even have a workshop for partners/T3s! Being a support person of a PWD is not always easy and often has it’s own set of challenges, and we want to have a dialogue about elements of the T3 life as well! In the evening, we’ll hang out and take advantage of the Resort—whether that’s heading to the casino to listen to live music or sitting fireside with a new friend.

Kerri:  I’m sure people want to go check it out. How can folks find out more about the event??

Cassady:  For more information or to register, please go to connect1d.org/retreat. Once you register, you can join a closed Facebook group where attendees can connect and get updates on the Retreat. The page also ends up being a cool resource even after the Retreat because it’s a place where we can build on and keep in touch with the community formed during the weekend, ask questions, share resources, and post hilarious cat-themed diabetes gifs.

Just kidding. They don’t have to be cat themed. Registration ends March 15th and space is limited!

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Thanks, Cassady!   Whoops one more:

 

 

The Follow Up About Dexcom.

Today is Day 7.  I’ll be pulling this sensor off in six hours.

Day 7. No filter. No rash. No worries. #dexcom

A post shared by Kerri Sparling (@sixuntilme) on

No rash.  No filter.  Does this mean no worries?

(For reference, this post is a follow up from a week ago when I put on a Dexcom G5 sensor and transmitter without a barrier underneath the sensor.  For the last four and a half years, I’ve had an allergic/irritation response to the sensor.  Big, scaly rashes would blister up and take weeks to heal … like the one currently on my left thigh.  But rumor had it that sensors with an expiration date past 8/17/2017 were not causing this rash reaction.  

So I tried a 11/2017 expiration-dated sensor and the result?  No rash. NO RASH! The only issue I noticed was some blood around the transmitter after inserting it, but I wonder if that happens more often than I realize and the Toughpad had previously kept the blood from being visible. Whatever the case, I’m not itchy yet and I’m really, really hopeful that this rash issue is tabled forever. Next question is what to do with the box of sensors that has a pre-August 2017 expiration date …)

Sixaroo.

Little Guy,

Six months old!!  Is what you are.  Indeed, six months ago you were all coiled up in my belly like a snake ready to strike into our lives, which sounds super violent but was more super exhausting and super cute than anything else.  Hey, run on sentence, there you are.

We’re at the point with you where we can’t exactly remember what it was like NOT to have you in our lives.  A highchair in our kitchen?  Always.  The extra bedroom suddenly inhabited by a crib and a stack of diapers?  Always.  The laundry machines churning and burning at all hours, for all eternity?  ALWAYS.  We’ve always had mashed bananas in a bowl.  We’ve always had a giggling little monster man.

We’ve always had you, kiddo.

This Guy. 🍅

A post shared by Kerri Sparling (@sixuntilme) on

Now, at six months old, you have left behind that squishy infant baby person and have become this full-faced, big-eyed little grabby-handed peanut.  You love to grab your feet and try to force them into your mouth.  You think my nose is something removable and you attempt its removal daily.  You laugh – hard – anytime anyone startles you.  (Except the other night, at that restaurant, when the automatic hand dryer in the bathroom made you lose your mind with fear.  Poor little fella.  You sobbed so hard that a woman who was about to dry her hands threw them up in a panic and said, “I’ll drip dry!  Drip dry!  Poor little guy!!”)

On the food front, you’ve tried plenty of different tastes.  Pears are pretty popular.  Bananas are delicious.  Mashed cauliflower confused you but you ate it anyway.  Avocado could potentially be a friend.  But sweet potatoes are your JAM.  They make you delighted.  DELIGHTED.

Your favorite person isn’t me.  Or you dad.  Your favorite person is your sister.  Your whole face completely lights up with a smile reserved just for her whenever she talks to you.  The other night, while we were in New Hampshire for a few days, the two of you refused to fall asleep because you were too busy giggling.  She, playing peekaboo, and you, letting loose a belly laugh that could have caused an avalanche in the White Mountains.  She loves you, big time, and you return that love plus ten.

We snuggle often, you and I, and I love the moments right before you fall asleep for a nap, when you reach up and hold my face.  I love that.  LOVE.  It makes the memory of years of wanting you dull and fade, erasing so much of that pain and replacing it with love.  And spit up.  And diapers that I wouldn’t FedEx to my worst enemy.

But mostly love.

Love you, little Guy,
Mama

The One About Expiration Dates.

On the Dexcom and Libre Rash Facebook group, I saw a note posted back in December from someone referencing sensors with an expiration date after August 17, 2017.

“Dex recently changed their mfg process to eliminate a substance that caused rashes in some. Get some expiration date AFTER 8/15/17 …”

Huh.  Interesting.  (Read: HOLY SHIT COULD THIS BE TRUE??!!) I’ve been experiencing a Dexcom adhesive rash since 2012 and despite many conversations with clinicians and diabetes device industry specialists, no one has a solution for this issue.  (No one openly acknowledges this issue, either, which I find weird.)  For several years, I thought I was the only one having a rash reaction to the sensor adhesive, but then the Facebook group popped up and holy shit, there are a lot of us.  (The group currently has over 1900 members.)

Since 2012, I’ve tried several workarounds for this rash issue.  Steroid inhaler spray, barrier tapes, the blessed JnJ Toughpad … nothing eliminates the rash completely but the Toughpad does the best job of giving me seven days of sensor wear.  Fine.  The data and protection I get from using a CGM is worth the itch.  (See also: two solid pregnancies, two healthy kids, an A1C I’m happy with, and a marked decrease in overnight hypoglycemic events.  See also also:  “hypoglycemic events” is a stupid name)

Expiration investigation.

A post shared by Kerri Sparling (@sixuntilme) on

My previous sensor shipment has an expiration date of August 7, 2017.  The shipment I received last week expires in November 2017.  Even though I have a couple August expiration sensors left to use, I’m skipping ahead.  I want to know if the rumors are true.

New one goes in in a few hours.  Here’s hoping.

 

Eye Quit.

It’s like a patch of horrible road rash that you don’t bandage and instead throw the itchiest wool sweater over, then roll around in pine needles.  All day long.  Every time you blink.

This pretty much sums up what recurring corneal erosion feels like.

Friday night, I felt the twitchy, horribly familiar symptoms associated with an eye tear – the redness, the slight swelling, a little bit of blurry vision – but I assumed that a good night’s sleep and some eye lubricant would do the trick.

It did not do any trick.  Saturday morning, my right eyeball was a disaster, almost as badly injured as the first time it happened (six years ago).  It was swollen, razor-bladey, and super sensitive to light, very similar to what happened in San Diego several years ago.  Plans to bring Birdzone to a birthday party?  Delegated.  Plans to attend the Writer’s Guild awards in NYC on Sunday night?  Nope.  (Good thing I hadn’t taken the tags off my dress yet.)  Hopes of spending time away from the two kiddos and having fun?  Or reading a book?  Or even thinking about opening my computer and looking at emails?

Up in a puff of a cat turning into smoke.

… didn’t see that gif coming, did you?  Me neither.  But thar she smokes.

Because I was only 80% sure that it was a corneal tear and not an eyelash jammed up in there (the eye swelling was pretty tremendous, making me think there could be a foreign body stuck in there) and also because it was a Saturday morning and not a single eye doctor’s office was open in our area, I ended up at the local walk in clinic.  They confirmed my eyeball only contained eyeball and recommended I spend as much time healing as I could.

What best heals a corneal erosion is time with your eyelids SHUT.  Which translates into spending 48 hours straight in bed with the blinds drawn and a bunch of cold compresses and eye goop at the ready.  Which also translates into the kids going to my mom’s for the weekend and me asking Chris to go to the event in NYC so I could hole up and sleep without experiencing any mom guilt.  But with the house empty, I was able to rest and heal, despite blood sugars that went bananas in response to the pain (hello, 200% basal rate for two days).

It wasn’t until Tuesday morning (thanks, holiday weekend) that I was able to get to a proper ophthalmologist, who took a look at my eyeball and deemed it “incredibly swollen.”  He prescribed (in addition to follow up visits) some steroid drops for my eye that took effect within hours and by Tuesday night, I was able to properly see for the first time in three days.

I was eye-lated.  Eye’ll never take my ability to open my eyes without pain for granted again.  I hope I didn’t lash out at my loved ones when I was in pain and that they’re tolerant of my terrible vitreous humor.

Eye jokes are the worst.  But eye-related animated gifs are the best.

Iris my case.

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