My Blue Veil…

Over the weekend, I had the unmitigated pleasure of wandering through the de Young Museum in San Francisco.

Most of my time spent in places of curated beauty is one of breathless anticipation, rounding corners to discover new pieces of art that stirs up emotions deserving to be felt in raw form. I have my favorite genres and periods and tend to gravitate towards those galleries, but sometimes, as I wander through a room on my way to get to what I want to see, I find what I need to see.

Edmund Charles Tarbell’s The Blue Veil.

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As I stopped to admire the piece for the colors and her captured solitary moment, I noticed the placard next to it held more than just the name of the artist and who donated it. It was this…

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I have no idea who Jonah Copi is, but I’m grateful to him.

My diabetes community is my blue veil.

“I give her clarity

in a state of confusion.

I give her guidance

in a time of fogginess.

I am not only her veil

but her friend and protector.”

Sometimes we forget that we have a blue veil when diabetes becomes overwhelming.

And sometimes we lift that veil to allow others to step in underneath it to see our secrets and share in its comfort.

But this is what I know: my world is colored with the beautiful blue that symbolizes my community and my friends. And I wear my blue veil proudly and hope that I can protect it as well as it has protected me.

As November draws to a close and another “Diabetes Awareness Month” is on the books, the general public will go on to the next awareness campaign. I’m not angry or jealous, as we should all look to other communities with the same openness that we ask from them. I am just so very grateful that my blue veil will not disappear or leave me. It is always with me.

Even in a museum tucked in a corner, waiting for me to find it.

 

Creeper

723890_942368176.3%.

6.5%

6.8%

The last three A1Cs.

My CDE asked a simple question:

“What do we need to do?”

I love that she thinks she can help. That she can do something. But I know better.

I’m a creeper. And I know why I’m creeping up, but I’ve been ignoring it.

I’m ignoring the beeps and buzzes of my Dexcom. John will hear it go off – in the other room, because I can ignore it more effectively if it’s not near me – and he’ll say: “Your diabetes is going off.” I’ll nod, say: “It’s high.” or “It’s low.”

Actually look at it? Well…

Take action on it? Well…

Sometimes it takes someone else to point out that you’re creeping. After I went to my latest appointment, John told me that he’s noticing that I’m not doing anything after I see my blood glucose level on a screen.

“Why? What’s stopping you from doing this when you know it will help you?”

The lows are scaring the hell out of me, because I’m not feeling them until they are so bad that my heart is pounding and I’m in panic mode. The highs are safety. And when they’re too high for too long, my action is to SWAG to bring it down, but never so much that I’ll be at 100. I want to feel safe. And I also know that I don’t have to be as vigilant if I know I’m high . And that’s dangerous.

“What do we need to do?”

It’s what I need to do.

Take action. Take care. Listen to the technology that I do have to help. Do it.

I’m not burned out, but I’m in that headspace where my own diabetes becomes a distant hum of a gnat I can’t swat, so I let it buzz.

And creep.

My CDE and I upped my basal rate, looking at the graphs that were in front of us, and I’m hoping that the highs will stop being so high – and I’ll work on listening to the Dexcom.

It takes listening to others sometimes to make a change happen. Listening to your medical team, your family and friends, and the DOC. (Because, DOC, knowing that I am not the only one who does this makes me feel not so alone.)

And then doing it.

So, thank you to my CDE and John and the DOC for being the “we”.

I’m done creeping for now.

#DOCAsksFDA Needs You

FDACalling all PWDs! Calling all PWDs! Pick up the bat phone!

 

O.K., really, just need you to take a quick survey to help the entire diabetes community. 

On November 3, the FDA will host an unprecedented discussion between the diabetes community and senior agency leadership (both drugs and devices). 

The event will be live webcast from 1 – 4 pm.

How much of a big deal is this?

Big. Super mega colossal big. 

The event will include a panel of patients (T1 and T2), as well as representatives from ADA, JDRF, and diaTribe.

Each of us live with challenges due to our diabetes every day. Take a few moments to share your thoughts on what’s important when it comes to living with diabetes.

The survey, posted over at Diatribe, is short. The results will go DIRECTLY to the peeps over at FDA and will influence the dialog that will happen on November 3rd. Diatribe is asking those with diabetes (Type 1, Type 2, MODY, LADA, etc.) to help gather all of our thoughts.

We need to show the FDA that patients care about these issues, that patients have valuable input to share, and that the treatment options we have are still not good enough. 

As soon as the link to register for the live event is posted, I’ll get you the details. In the meantime, the survey awaits your input.

Help the FDA understand what we want for our future.

They’re listening.

Let’s tell them.

AADE 2014 – Fasten Your Seat Belts…

event_guide_icon_100x100.original.1389889617.ios-2x.1400474897I have arrived in Orlando for this year’s American Association of Diabetes Educators conference. How excited am I to be here?

These individuals help to make our lives… livable. My current CDE is amazing (shout out to Michele!) and without my favorite “teaching nurse” (which was what Joslin Center called them; they’re diabetes educators…) Cindy, I would have been a mess more of a mess in my teens and twenties.

If you have the honor of knowing a CDE, take a moment to thank them. I plan on doing a lot of that for the next few days.

How excited are my blood sugars?

Very. In the wrong way.

300?

Really?

I feel like I should yell “We Are Sparta!” as I rage bolus.

In between the DOC-centric presentations (Cherise of DSMA is speaking today and Bennet, Kerri, Jeff Hitchcock and Dr. Block are speaking on Friday), I’ll be talking with exhibitors about the latest products on the market and with diabetes educators doing some amazing things with… diabetes education.

So, this is just a quick post to say:

“Please buckle your seat belts and place your tray tables in the upright and locked position. We are ready for takeoff.”

 

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.