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Posts from the ‘Diabetes Advocacy’ Category

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.

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

Airport Connections.

The plane from Cincinnati to Washington, DC was a petite one, leaving little room for carry-on luggage and even less for calm.  After ferreting out my medication bag from my suitcase, I checked it at the gate and ended up second-to-last to board the plane.

“Smells like … something, doesn’t it?”  The gentleman behind me asked casually.  I wasn’t sure if he was addressing me, but I answered anyway.

“It does.  Like a ham sandwich.  Or Bad Thanksgiving,” I replied, noticing that the plane had a “stale cold cuts” smell to it.

We boarded the small plane and took our seats at the back of it.  Turns out the scent-sitive man who boarded behind me was also my seatmate.

We chatted briefly for a few moments about what we did for work – he worked for a surgical medical device company, I told him I was a writer – and then the discussion turned specifically to medical devices.

“I’m familiar, to a certain extent, with some medical devices.  I wear a few for diabetes management,” I said.  “Going through TSA is always interesting.”

He looked at me for a minute.  “Diabetes?  Type 1?”

“Yes.  Since I was seven years old.”

“My daughter is nine.  She also has type 1.”

And over the course of our flight to Washington, DC on the plane that smelled like spoiled lunch, this kind man and I compared notes on life with type 1 diabetes from our different perspectives.  It wasn’t a life-changing moment or a pivotal interaction, but served to confirm once again, how diabetes becomes a common thread that brings strangers together.

Even on a stinky plane.

 

Revisiting: Undefined.

“You have diabetes  You seem fine.” “I am fine.”
Diabetes makes me walk the precarious fine line
Between “I’m sick” and “I’m not” and the whole in-between
That makes diabetes invisible, and yet so seen.

“Needles?  Every day?  I could never,”
You could.  And you would, and you’d do it forever
If that’s what kept you from good life or harm,
You’d never think twice of needles in your arm.

“You seem fine.”  “I am fine, at least I think?”
I try not to let it push me to the brink
But even my best days are still diabetic
And on some days I feel frustrated, mad, or pathetic.

I can follow the rules and try to appease
The needs and requirements of relentless disease,
But even my best days are burnt at the edge
By the efforts that work their way in like a wedge.

“You seem fine.”  I am fine, except days when I’m not.
But I do what I’m told, and I learn what I’m taught.
And I’ll keep working harder to keep from the claws
Of an illness that doesn’t do “rewind” or “pause.”

Will it stop me?  It might, I can’t lie – and that’s scary
But between now and then, I throw all these hail marys.
It’s life, and it’s mine, and I won’t let it bear
The weight of a heart and mind wraught with fear.

There are miles to run, and children to hold.
There are travels to have, and stories to be told.
Diabetes?  Intense, and it looms, and it’s giant
But I’m more than my pancreas.  I’ve become self-reliant.

I may host beta cells that checked out long ago
But I refuse to accept the assumed status quo.
I’ll work harder, think smarter.  I’m not resigned
To accept limitation.  I live life undefined.

#WalkWithD: Lorrian’s Type 2 Experience.

(This might look familiar to you …)  A few weeks ago, I wrote about how I was seeking to learn more about my peers with diabetes, specifically folks with type 2 diabetes.  Living with type 1 diabetes myself, it’s hard to me to “walk a mile in their shoes,” so to speak, when I felt so uninformed about type 2 diabetes in the first place.  A few people left comments on that post, and I’ve been working to bring more of their journey with type 2 diabetes into the forefront, so I can learn from them, and so we can learn as a community. 

Last week, John shared his story, and this week, Lorrian is sharing hers.  Lorrian Ippoliti has been living with type 2 diabetes for almost 11 years, she is a native Californian, and she has been married to her husband, Mike, for nine years.  Today, I’m grateful that she’s sharing her #walkwithd.

*   *   *

The year before my diagnosis, my primary care physician called me and told me that my annual blood work showed that my “sugar (was) high” and that I “should watch it.”  Watch my sugar? What did that mean?  I didn’t ask, and my doctor didn’t offer.  [She certainly didn’t say anything about pre-diabetes]

The following year, my doctor’s office asked me to return so my doctor could review my blood work in person.  My doctor told me I had type 2 diabetes, gave me a sheet of paper about low carb diets, a prescription for Glucovance, and told me to “call me after you pick a meter.”  [My A1c was 13.4, but she didn’t explain what that meant]

That. Was. It.

No referral to an endocrinologist, no suggestions for reading materials or classes, no direction on how to choose/where to find a meter, and I was too stunned and frightened to ask any questions.

My husband and I researched diabetes (thank goodness for the Internet) and made drastic changes to our diet because of our fear, which led to multiple hypoglycemic episodes (chugging fruit juice in Costco, anyone?).  A coworker of mine explained to me about meters and showed me how to test, and a coworker of my husband’s referred me to an endocrinologist.

The endo took me off Glucovance, which eliminated most of my hypo episodes.

Even with my husband’s support, the first 8 years were awful, full of misery and fear and guilt.  The drastic diet changes we’d made were hard to sustain and I was constantly battling food and trying to make sense of how my body reacted to it.  I somehow got my A1c below 7, only to have it climb back up to the 11-ish range as I alternately rebelled or gave into feelings of helplessness.

Eventually, that endo told me there was nothing else medically she could do for me.  Yeah, a doctor gave up on me.

I completely gave up on myself after that.  I continued to take my medications, but for about a year I didn’t see any doctors at all.  I didn’t think anyone could help me or would listen to me.  (Even my dermatologist argued with me about the name of one of my diabetes medications, insisting that there was no such thing as Glimepiride and writing down Glyburide in my chart instead, so I gave up on him!)

Eventually, my husband told me how worried he was about me and that he wanted me to live for a long time.  Mike had found a nutritional therapist and we began seeing her as a couple.  Then he asked me to see his primary care physician, who turned out to be the first doctor to listen to my frustrations and fear.  He was so caring and agreed to manage my medications, but told me he wanted me to find an endo and gave me a six month deadline.

I found a new endocrinologist who is kind and compassionate, and both a cheerleader and a taskmaster.  She listens to me, celebrates my small victories, and pushes me to accomplish more than I believed I could.   Was there anything she medically she could do for me?  Sure!  She tweaked my medications, taking me off Glimepiride, increasing my Actos, and adding Lantus (insulin) and Victoza (an injectable which slows the emptying of my stomach).  (These medications were all available when I was seeing the previous endo.)

I’ve gained weight using Lantus, but my A1c has decreased from 11-ish to 7-ish.  I’m also back to having hypo episodes (one or two a month).  It’s a frustrating trade-off.

About two years ago my endo prescribed a Dexcom CGM, which has helped change my outlook about having diabetes.

For example, my endo wants me to have a glucose level of 100 mg/dl when I wake, which has been impossible for me to achieve and made me feel like a failure.  Using the CGM revealed that I have dawn phenomenon.  Seeing my glucose level in action relieved a lot of frustration – and – my endo can see that I hang out around 100 mg/dl for much of the night, but my level usually rises 30-40 points starting around 4:30am.  Plus, as an accountant I’m a data geek and having access to my numbers round the clock has helped me see patterns related to food and activity.

It has been an arduous journey since my diagnosis.  I’ve gone through the various stages of grief – indeed multiple times it seems – and I believe I’ve finally arrived at acceptance.  I can live with diabetes.

Kerri’s blog has been a touchstone for me throughout my journey – her openness about the challenges she faces have helped me know that I’m not alone, and I especially appreciate learning about the technology available to us.  In fact, my endo was impressed that I already knew what a CGM was, and now I’ve added CGM in the Cloud/The Nightscout Project to my diabetes management. (I HIGHLY recommend it!)

I share John’s outlook on what the designation type 1 vs. type 2 means.   Despite how we each developed diabetes, I feel that those of us with the disease share many more similarities than differences.   I want to thank Kerri from the bottom of my heart for inviting me to share my story and I’m looking forward to the future.

Thank you so much for sharing your story, Lorrian!!!

#DayOfDiabetes Went a Little Rogue on Me.

I started the day strong, but after hours of a frustrating high blood sugar and seemingly bolusing saline instead of insulin (but it was insulin – I checked), I hit a big NOPE when it came to documenting the end of my #dayofdiabetes. I didn’t want to keep documenting my frustrations, not because I was ashamed of them, but because I was FRUSTRATED, you know?

Even though there isn’t a hashtag for my day today, I’m still here. I’m still doing this diabetes thing. And despite some frustrations, I remain fine.

Chronicle. (See also: #dayofdiabetes)

(Chronicle was a movie from a few years ago that I actually liked very much, even though it god a little crazypants towards the end.  Still, a quality film, IMO.)

But today’s post is not about that movie.  It’s about chronicling a day with a chronic condition.  For Diabetes Awareness Month, I’m taking diabetes awareness to task by documenting the daily duties of life with type 1, from site changes to emotional responses to blood sugar numbers … and all the non-diabetes-yet-still-diabetes crap in between.  A big advocacy “thank you!” to Chris Snider’s #dayofdiabetes campaign, and I think November is a perfect time to pop the bubble of diabetes awareness.  People living with diabetes know what diabetes is like.  Let’s show people who might not understand what a day in the life truly means.

Join in on Twitter using the hashtag #dayofdiabetes and share what strikes you about life with diabetes.  Then share that hashtag with your non-diabetes friends, family, coworkers, and Internet connections because Diabetes Awareness Month should be about educating outside of the DOC (Diabetes Online Community).

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