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Posts tagged ‘PWD’

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

Your moop or mine?

The first flight out was jumbly, with the plane riding into some kind of air pocket right after takeoff, eliciting audible screams from some of us.  (No, not from me.  Turns out that, if things get scary, I resort to frantically saying the F word under my breath whilst clutching the arm rest.)  Once the plane hit some smooth air, everyone breathed a little easier and tried to mellow out.

In the silence of folks calming down, I heard that low, moop sound that the Dexcom G5 app makes when it is ready to be calibrated, like the sonar ping from a submarine.  It’s subtle but unmistakable.

Moop.

My sensor was fine when I boarded the plane.  I pulled out my phone anyway, just to make sure my CGM wasn’t crying for attention.  Huh.  Not me.  Sliding the phone back into my purse, my peripheral vision caught the movements of the woman next to me, who had her phone in hand and I could see the little pigeon head I knew by heart.

“Type 1?”

She grinned.  “Yeah.”

“Me, too.  Since I was seven.”

“I was 13.”

“I thought it was my CGM that needed to be calibrated,” I said, gesturing towards my phone.  “But it was you this time.”


It’s the thread that runs through all of us, that instant and unfettered understanding of the thing that simmers on the back burner some days and threatens to burn the house down on others.  I know that feeling. So did the woman next to me.

Instantly, she became familiar. I didn’t know her name or where she lived or what kind of history she brought on board with her, but there was an instant connection of, “Yeah, me too. I know that thing you have. I also moop.  And beep. And check. And worry. And celebrate. And dose. And fight. And laugh. And keep perspective. And move on.”

Guest Post: Taking Steps Towards Better.

Emotional health can influence someone’s physical health, and after decades with type 1 diabetes, I know that my health is best when I’m being cared for as a person, with mental health categorized as high a priority as my A1C or standard deviation of blood sugar.  How you feel about the disease you live with every day matters.

Today, my favorite texting friend (known formally in our house as The Briley) is taking over SUM to talk about the steps she is taking to overcome diabetes burnout and find  some peace in the daily demands of her disease.  You can read more from Briley on her blog InDpendence, or on Twitter as @4thandlife.  

  *   *   *

When I saw my new endocrinologist, Dr. A., she was better than I ever could’ve imagined. She helped me with my problems, and handed me a box of tissues as tears rolled down my face. At the end of our first appointment she asked if I wanted to talk to someone about my burnout. There were so many thoughts flying through my mind convincing me that I didn’t need to meet a mental health professional.But then the memory of being pulled out of a bathtub by my mother after I collapsed from a low BG rushed through my mind and my mental health advocate friend popped into my brain.

I said yes.

I didn’t know if it was for me. I didn’t want to go. But I didn’t want to be scared of my body anymore. I didn’t feel as comfortable with her as I did Dr. A. But it was okay.

There were questions that I was okay with her asking: “How low were you when you passed out?” And questions I tried not to answer: “Are you okay being single?” When she asked if I had a CGM, I had to explain how friends have all given me spare parts, but that I’m interested in getting the G4 with my new insurance. She proclaimed how excited she is for my friends and family to be up to date with my BGs. I didn’t have the heart to tell her I just want to see it on my phone.

It’s funny, when I leave my endo (past & present), I feel better because I feel like I have been hugged and comforted. I never felt comforted when I left her office. But I did feel better. Self-induced fear is a powerfully negative motivator. She believes that the fear of lows is where I sit compared to complete burnout. I have a hard time differentiating the two since whichever the reason is, I eat sugar earlier and bolus later. I was uncomfortable when she suggested raising my target BG (not being my endocrinologist or nurse), but when I saw Dr. A. again, she was very excited to have learned about my session and the why’s behind the change in my care.

I will be going back. But I haven’t yet. Even though I should. See, my co-pays are high enough that being at the office 5x in one month was way too much. She still scheduled me too early than what I can afford, so I cancelled that appointment. (Yes, I told her my very valid reasons for not going as frequently as she prescribes.) When I left her office, I was very unsure about going back since she ignored my information about being able to afford her. However, I feel better after hearing Dr. A. praise her work with me.

Am I out of burnout?

No way.

Am I making healthier choices and focusing on my diabetes in a healthier way?

You bet.

Why I Pack Heavy.

“And then Marcus gave me a Valentine and it had SPIDERMAN STICKERS on it and I love Spiderman stickers so that was the best Valentine I got except the one from Maddie that had a pencil and that was ALSO THE BEST ONE,” yelled Birdzone from the backseat as I was buckling myself into the driver’s seat.

“Yeah?  So Valentine’s Day at school was awesome?” I asked her, reaching over my left shoulder to grab the belt.

And then I felt that familiar, gentle * pop * of the infusion set coming loose from the back of my arm.

Rarely do I have the chance to use my emergency supplies (which is a plus because that means I rarely have emergencies), but I always carry them.  Even though I wear an insulin pump, I keep a back-up pen of Humalog floating around in my purse.  Sure, it will eventually expire and I’ll have to swap it out for a new one, but in a pinch, it’s enough.

And even though it’s a bulky little spaceship to keep on hand, I always have a back-up Inset for just-in-case moments, like when I accidentally rip out my infusion set in the parking lot of Birdy’s school.

This is why I don’t ever pack light; when you’re a klutzy PWD, a small purse just isn’t an option.

 

I held hands with Superman.

I held hands with Superman.

It’s true.

He was six years old and missing a front tooth and melted my heart by comparing pumps and trying not to step on any cracks as we walked along the sidewalk towards the Children’s Museum.

“Can’t step on the cracks,” I warned, tipping my foot sideways to avoid a fissure.

“Got it. I won’t step on a single one.” Superman (aka Shannon’s son) hopped on one foot to dodge the same fracture.

Not since Clara Barton camp have I had so much interaction with other diabetics. Last week when I met Amy and E. for the first time, it was so comforting to sit down to a nice dinner and watch everyone order dinner and then absently reach for their meters; stored in fancy Kate Spade bags, travel cases, or the trusty black zipper case. No qualms about testing at the table. No issue with dosing up insulin, either via pen or pump. There’s a certain odd comfort to someone else sharing the same programs of preservation.

I had the same feelings sitting down for lunch with Shannon and her beautiful family, Julia and her blue eyed daughter, Nicole and Lyrehca. Kids bouncing all over the place, lunches being unpacked or purchased, and a handful of distracting indoor pigeons. Meters gauging glucose levels, pumps brought out from pockets and carbohydrates calculated. As the adults bolused, I saw Superman eyeing the pumps on our hips, similar to the one on his.

We tore through that Children’s Museum like we were all kids. Exploring all the floors, we played in puppet show kiosks, the Arthur Exhibit, construction sites, the Hall of Toys, and the golf ball racetracks. The kids played in the “Supermercado” while Nicole and I tried to put back all the toy food items before the kids could take them all out again (slightly OCD, anyone?). Superman Brendon sold me a $100 plastic pineapple. I learned what a Baby Sling was. I wore a blue plastic bib and played in the soapy bubble exhibit. We discussed how big the cow was that filled the huge Hood milk station in the courtyard. I watched moms integrate testing bloodsugars throughout the day and I wondered if that’s what my mom used to do.

We played all afternoon long. Everyone was diabetic but I forgot I was diabetic for a while.

Such a strange thing, to meet people in person who you’ve only interacted with online. Especially for this group of diabetes bloggers, who know the deepest fears and proudest moments of people who they’ve never seen smile in person. But there was that instant comfort upon meeting these people, into whose lives I’ve had the pleasure of glimpsing, that made an afternoon at the museum feel long overdue.

Thanks to everyone who came out to Boston on Saturday!

Note to Nicole: Please buy a cellphone. Please??

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