The Tribe

Birdie (Kerri Sparling's daughter) and The Kid (my daughter) at Friends For Life 2013 - just two of the gorgeous children that T1s can produce.
Birdie (Kerri Sparling’s daughter) and The Kid (my daughter) – just two of the gorgeous children that T1s can produce.

In less than twenty-four hours, I will be surrounded by my tribe.

Friends for Life, the premier conference for families with Type 1 children (and some of us Type 1s who are children at heart), is going on in Orlando for the next few days. It’s the one conference that no one will ask you if you can eat that, look at your pump and wonder aloud if it’s a pager, or want you arrested if you say you’re high and pull out a needle.

The tribe grows larger this year. I’m honored to be on a morning panel for the first ever Diabetes Advocates MasterLab – a full day session discussing the importance of advocacy and how everyone touched by diabetes can be an advocate. What’s special about this is that we’ll have Type 1 and Type 2s together, along with the parents and grandparents of Type 1s (with some of them being Type 2s themselves). The more encompassing the tribe is, the more powerful it becomes.

For as horrible as this disease is, there is comfort in the solidarity of the tribe. Complete strangers give knowing nods in passing, acknowledging green bracelets signifying Type 1 diabetes on each others’ wrists. When a Dexcom trill goes off in a room, twenty people look down to see if it’s theirs. Someone has a low blood sugar? A torrent of glucose tabs rains down upon them.

There is such comfort in being with others who understand the silent wish as a meter counts down to a number. There is such joy in celebrating the new, squishy babies of T1 moms. There is even such pain as the tears flow when a fellow T1 speaks aloud your innermost fears. We are bound together by blood. And nonfunctioning pancreases.

The dream of The Diabetes UnConference came out of last year’s attendance at Friends For Life. I learned so much, but it was the moments of “life discussions” outside of the meeting rooms that sparked so much of what has now become a part of me. This year’s Friends For Life will continue to be a catalyst in how I live and be an inspiration of who I want to be.

I am eagerly awaiting the open arms of the tribe that no one ever wanted to join.

My friends.

My d-family.

My tribe.

 

This Is Not A Contest…

189659_2508If you don’t know this by now, I’m here to tell you.

Diabetes is not a contest.

There are no grand prize winners, no consolation prizes, and no picking what’s behind Door Number 2. You can dress up in a silly costume, but a game show host will not be selecting you to jump up from your seat in the studio audience.

And yet, I see that some people with diabetes trying to make it seem that way on social media.

I belong to a number of groups on Facebook that focus on diabetes. Some groups provide wonderful articles from reputable sources while others, promoted as a place of support, are crammed full with pronouncements and requests for advice.

“What’s the highest your blood sugars have ever been?”

“What’s your lowest recorded blood sugar?”

“How much insulin do you take each day?”

These are questions that pop up frequently on my newsfeed and the answers are almost boastful.

“1125!”

“18!”

“I take 150 units of Novolog every day…”

I’m curious as to why these people ask (and answer) these questions. Is it because they feel the need to compare themselves to others with diabetes? Are they better than others? Worse off?

Diabetes is not a contest. 

Yes, sometimes we play the “Guess my blood sugar!” game with a friend or family member. (John always wins that one in our house; I think he cheats.)

We take bets daily on which dosage will be the right amount to keep blood sugars within range. Sometimes we take a chance with our blood glucose meters.  I’ve played chicken a few times with my diabetes management, and I’ve always come out the loser. Some are diligent and still come out losers. But it’s not a contest, right?

We may try to game our disease, but there are too many slots on the roulette wheel to say for sure where that ball will land… and you know that the house always wins in the end.

And in the end, the quality of life for all of us is compromised because of a disease that doesn’t let us win, but we do get to have the play at home version as a lovely parting gift.

Diabetes is not a contest. 

There are no right answers. No buzzer at the end of the round with commercials from our sponsors.

Every individual with diabetes is different and while some may be coherent (barely) at 35 mg/dl, others may have long lapsed into unconsciousness. Those wandering upright with highs over 500 mg/dl are not to be scorned or lauded; they need help to bring their blood sugars back into range. It doesn’t matter if you take one unit or 1,000 units of insulin per day – whatever you need to keep you safe and alive is what you need.

I have never hid my A1C struggles. My current is 6.7%, up from a low of 6.3% last year. I don’t get a medal for that, just as I don’t get a medal for the A1Cs in the teens during my high school years. My A1C is a signpost and I have a choice to make every day on how I handle my blood sugars and my diabetes.

Some people with diabetes share their A1Cs in an effort to show others that they’ve been working diligently at making positive changes in their lives. These PWD talk about those positive changes, giving their take on their own struggles. I love reading these posts, because this is the reality of diabetes.

Those who, and I’m judging a little bit here, boast about how they’ve never had an A1C over 6.0% because they take care of themselves… well, I can do without the gloating. (And they seem to never give the “how” of how they keep it at 6.0%, more of a “I just follow the rules…”.)

Diabetes is not a contest. 

It’s not a reason to get incensed when an unsuspecting stranger makes a comment that blatantly shows they do not understand the nuances of the disease and its many iterations. I see these posts far too often:

“How dare they tell me that I can’t eat [insert food here]! They don’t get it at all!”

“That mother has NO idea how difficult it is to parent a child with diabetes!”

“I hate that the public thinks we all have Type 2 diabetes! I want to change the name so that they will know it’s different!”

Well, this is, as a former supervisor would say to me, “an opportunity to excel”. Turn the rage into a teaching moment. Rather than getting all indignant and stirring up others who feel like we’re misunderstood, take a moment and breathe, then say:

“Diabetes is a complex disease. There are different types and different ways to treat the disease. If you have a moment, I’d love to tell you a little bit about it, so that you can help others learn.”

And you can change the name of a disease all you want… it will still be the same disease with the same misperceptions. You’ll just spend more time hollering into the blackness about how the name is different.

Diabetes is not a contest. 

It doesn’t matter in the end what diabetes you have. There are preconceptions and misconceptions about both types from the general public and even from within the diabetes community. Have you seen these quotes before?

“That person asked me if I have the bad kind of diabetes!”

“She told me that my diabetes must be severe if I have to take shots!”

“Type 1 diabetes is far more difficult to manage than Type 2!”

“Type 2 is an obese disease. Type 1 isn’t.”

Long term, we all are hunched over from the weight of complications that pick at every part of our bodies. Our pancreases don’t work properly. All diabetes is bad. All diabetes is severe. All diabetes is difficult to manage. And guess what… both types of diabetes can be “obese” diseases.

I am living proof that you can be fat with Type 1 diabetes. I know many people who are thin as rails with Type 2.

Why are we trying to prove to ourselves and others that one type of diabetes deserves more pity or money or time or effort or public awareness?

Diabetes is not a contest.

It’s a disease.

No one wins.

 

 

 

 

 

#DBlog Week: Thank This…

Wanna know what gets me all fired up? I’ll get to that. First, I want to tell you how I got here to get fired up.

Thank this guy.

John Wedding Day

Without John, I would have never found the Diabetes Online Community. It was his “What are you going to do about that?” to my lament over the lack of podcasts about diabetes way back when that began me on this journey. Before him, I was a person with Type 1 diabetes who didn’t know anyone else living day-to-day like me.

He and I created diabeticfeed, the first podcast about diabetes. It was a mélange of research news, interviews, and resources and a way to connect with people who have become like family to me.

One of my first interviews was with this woman who was Type 1 and had just started a blog. We clicked and connected over a love of all things snarky and the bond created by diabetes. You might know her. Kerri Sparling.

Kerri and Christel

Thank this woman. Kerri began working at dLife, and through her, I penned a column about living and celebrating who we are. Kerri and I might both have diabetes, but I have a feeling that even without this disease, we’d still be making inappropriate comments to each other.

Over time, the little group of ragtag renegades who talk about diabetes on the Internet became closer. Friends. Some of us became like family. Thank these people. Kerri, Scott K. Johnson, and George Simmons have been my rocks and my confidantes and I love them.

Extended Family. © Kerri Sparling Kerri, Christel, Scott, and George.
Extended Family.
© Kerri Sparling
Kerri, Christel, Scott, and George.

As the small group grew larger, it became known as the Diabetes Online Community, and it encompasses thousands of people all across the world. I got busy with things outside of my diabetes and drifted off into obscurity. I kept in touch with many people I had met, but did nothing “formal”. And it was that way for a while.

But the Diabetes Online Community is like the mafia. Blood in, blood out, blood on the test strip…

“Just when I thought I was out, they pull me back in…”

This blog began over a year ago in response to something that irked me, and it was appropriately titled: “In Retrospect, I Should Thank Him…” So thank that guy.

And then… you should thank this guy. Heartily thank him.

Bennet and the Sign

 

Bennet Dunlap and I forged a friendship at the first Roche Blogger Summit in 2009 and he’s my Don Corleone. We both think alike when it comes to sharing what we find not cool in the world and speaking freely about it. (See the sign above? Yeah….) And because of him, I’ve realized that I have the ability to make a difference… and a little trouble.

All of these people helped me find a voice, connect with others, and share my ideas about living well with diabetes.

  • I advocate for all people with diabetes (discriminating between Type 1 and Type 2 is a waste of time and effort) and blood glucose test strip accuracy.
  • I advocate for data access so that I can better manage my diabetes.
  • I advocate for access to the medications and tools for everyone with diabetes, regardless of location or financial situations.

I advocate for myself, my family, my friends, and for every single person with diabetes and their friends and family.

I know that I can’t do it alone and I’m thankful for those who have built an amazing community and continue to make it stronger.

I’m fired up for my community. So, thank my community.

This is how I thank my community. Join us. 

un-diabetes-conference-fullcolor-icon

 

 


 

This is my post for Monday’s Diabetes Blog Week. We were asked this:

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.


 

Diabetes Awareness Month: I'll Be Your DAM Guide

230436_5814November is Diabetes Awareness Month. (It’s also Awareness Months for epilepsy, COPD, Movember, pancreatic cancer, and prematurity.) For those of us living with diabetes, it’s also called… November.

I wanted to do something different this year to help raise awareness of a chronic illness that directly impacts 26 million people in the United States alone. (The indirect impact is staggering. Think of family members, friends, coworkers, employers, and health care professionals and you get dizzy and a little nauseous.)

Every day this month, I will share information about diabetes in an easy-to-read, easy-to-share post. I promise to be honest and not sugar-coat (Oh, the puns will happen. Just roll with it.) anything I share. I’ll give you facts. I’ll give you resources. I’ll give you experiences. I’ll give you the real deal. Some information will be common knowledge, but other posts will be ones that will make you stop and think.

For November, I’ll be your Diabetes Awareness Month guide. Your DAM guide, like Arnie.

 

 

 

Can I ask you to do one thing for me?

(You can do one thing – or many. Your choice. I’m happy with one, but go crazy if you feel like it. You’ll be in good company.)

  • If you haven’t subscribed to my blog, please do so. (Upper right hand corner. See? Over there? Where it says: “Get It In Your Inbox?”) Sign up and get posts about diabetes awareness and as a bonus, you’ll get other posts about diabetes and me. I don’t sell your email address, will never send you spam (not even the one in the can, because I hoard those), and you’ll never miss a post about the coolest toddler on the block.
  • Like this blog on FaceBook. Or you can follow this blog on Twitter. These don’t just have posts from this blog on them. I fish throughout the Internet for nifty snippets of diabetes goodness and throw them out as chum. Or delicacies. You pick.
  • But at least once this month, if you do nothing else, share a post about something you think is important for people in your life to hear about diabetes. (Each post has a share section at the bottom of it. You can even share a post via email!) Share with other people with diabetes. Share with a friend or a coworker. Anyone who will listen (and even those who may not want to listen, but need to hear it.), but share.

I am one woman, but I am aware that a single person can make a difference in the world. I am aware of what a few of us can do. I am aware of what many of us can accomplish. The Diabetes Online Community has shown me that. 

Now, before we start the DAM tour, does anyone have any DAM questions?

It's Not Just About Diabetes…

IMG_3617DOC bloggers make for hysterically funny bedfellows. 

I had the pleasure of meeting Rhonda from Fifteen Wait Fifteen recently. (She and her daughter took a day of their vacation to spend with me and The Kid. How cool is that?) We connected after reading each other’s blogs and recognizing some kindred spiritedness.

When I meet fellow diabetes online community compatriots in real life, I’m consistently struck with this thought: “Even if we didn’t have diabetes, we would be friends.” That was definitely the case with Rhonda, who had me laughing within two minutes of her arrival. And kept me laughing throughout the day.

We had met at my dad’s house (it was midway point from her vacation spot and chez moi), which put an interesting spin on things as my dad joined us for lunch. He played the role of Pépère (grandfather) to two darling toddlers who, I’m not joking, charmed a lady with their good manners and smiles to come to our table and give them cookies after we sat down. And yes, we let them eat the cookies before lunch. She and I believe in the “Life’s too short, so eat dessert first” ideology.

My father got to hear about diabetes from another T1 adult’s perspective, and as Rhonda was diagnosed at 21, he got to learn about the frustrations of having parents who didn’t have the benefit of classes and learning how to deal with a child with diabetes. I’m grateful that she was able to talk openly about that and just as grateful that he paid for lunch.

While we connected because we’re both T1s, diabetes didn’t dominate the day. She was dropping when they arrived and later in the day, I shotgunned a Mountain Dew to prevent a crash (Damn you, delayed gastric emptying. I’ll get you back one day.) There were boluses and finger sticks and a conversation about our spouses and how diabetes can impact relationships, but the majority of the day was spent talking about other things.

And that’s what I love about meeting people from the DOC. Diabetes may be something that we live with 24/7 with no breaks or vacations (try as we might), but with many of my friends in the DOC, it’s not just about diabetes. The connections are deeper.

If I had a million dollars (Please hum along with Barenaked Ladies if you know the tune…), I would build a place where all my DOC friends could come and hang out and just be…us. We may talk about diabetes, but there are so many other aspects of our lives that diabetes doesn’t touch – and that’s the core of who we are.  I love going to conferences, but when my DOC friends are there, it’s a constant struggle to get all the goodness out of the conference AND spend enough time with them outside of the diabetes tent. A few of us joke that we need a national/international diabetes meet-up where we just get together for three days in a room and hang out. Who’s with me?

I now miss Rhonda as I would a friend who I long to see again. And for that, I thank diabetes.

(But I’m not thanking it for the delayed gastric emptying. No way.)