Forever Arriving:

IMG_0839I’d love to give you a comprehensive synopsis of what happened at the inaugural Diabetes UnConference in Las Vegas a few weeks ago, but I can’t.

It’s not because of the social media blackout (more on that later in another post) that the attendees agreed upon at the beginning of the sessions so that people could talk freely about personal issues.

It’s not because no one took notes or had nothing to say. Others have already spoken eloquently about their experience.

It’s because I can’t yet fully wrap my arms around what transpired, because they are filled with my heart. And my heart is filled with emotions I thought I could handle, but apparently… silly me. Two weeks later and I find myself struck mute, throat constricted from a remembered confession and the gratitude of brutal honesty.

As Stephen Shaul says so beautifully:

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

About Us

He (and many others who have said much the same) is right. It was – and will always be – about us. Not just those physically present in the room at The Diabetes UnConference, but the “us” of our community. I’ll talk about the logistics and what worked and what didn’t – but the crux of what made this event so indescribable was the people and their individual experiences.

We are more than our diabetes, more than our diagnosis, more than our desires for a cure… but if we don’t discuss day-to-day living and “scary” or “taboo” topics with this chronic disease through deep, meaningful interactions (whether online or face-to-face), we run the risk of feeling isolated and disenfranchised.

1436965_20488329The Diabetes UnConference came out of a personal desire to create a safe place for these discussions – and an even more personal desire to push past the superficial connections that are sometimes created (not through anyone’s fault, but the way the Internet works…) online. When we walked out of that room a few weeks ago, were connections made that will take root and inspire others to be more open about living with diabetes and connect in new ways? Time will bear witness.

I know that I’ll be able to talk with greater clarity about what happened and what we are going to do next because of what happened, but for now, the cocoon is still woven tightly around me. I am comforted by that and I’m not ready to let these emotions fly just yet.

 

Stolen Words from Octavio Paz

While I can’t yet talk about it, this aptly describes how I view what occurred…

a crystal willow, a poplar of water,

a tall fountain the wind arches over,

a tree deep-rooted yet dancing still,

a course of a river that turns, moves on,

doubles back, and comes full circle,

forever arriving:

- Octavio Paz, “Sunstone”

1188980_19108234The poem is about an individual’s quest for connection and community and the loneliness that one can experience without it. (If you’ve never read it, be forewarned. It’s 584 lines long, representing the number of days it takes Venus to orbit the sun. It begins and ends with the same stanza above. This monumental work is beautiful and haunting and worth every line.)

The takeaway of the poem and The Diabetes UnConference is simply this:

we need each other. 

Whether it’s at The Diabetes UnConference or in local face-to-face meet-ups or in welcoming online community sites like TuDiabetes.org. We must create these spaces and throw open the doors to those who need to talk, all the while respecting the sanctity of what needs to be discussed

There will be a 2016 Diabetes UnConference.There will continue to be opportunities for more individuals with diabetes (and those who love us) to have heart-to-heart conversations and build new circles that grow, welcoming new and brave souls to share and teach us. I hope that smaller versions of what we began in Vegas will pop up in a local meet-up. I believe it can be done.

What did I learn (although perhaps, I always knew in my heart)?

Our community needs to have sacred spaces and full circles. We have deep roots and we will dance together. And most importantly…

We are forever arriving:

 

Two Minute Diabetes Advocacy: CGM Medicare is Back and FDA Goodness

708615_95129272It takes two minutes to make a difference for people with diabetes. Here’s the latest on how you can help.

CGM Medicare Bill: It’s Back!

Want the back story? It’s here.

Right now, Medicare does not cover CGM devices, leaving seniors with diabetes without access to this technology. Among the most important goals of our advocacy and education efforts is to ensure that those entering the Medicare program at age 65 do not experience disruption in their diabetes management. (None of us with diabetes is getting younger. If you are, please let me know your secret!) I don’t want a single person to be denied coverage of this device simply because of their age (or any other reason for that matter, but first things first, right?) and we have an opportunity to make a difference for our entire community.

Remember that this bill will also help when artificial pancreas technology comes to fruition. We need everyone to get involved.

The Medicare CGM Access Act has to be reintroduced in both the House and Senate in order to move forward. (New Congress = sort of starting from scratch, but this is a good thing, in my opinion…)

Representatives Tom Reed (R-NY) and Diana DeGette (D-CO) just re-introduced the bill in the House. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH) are expected to drop the parallel legislation in the Senate very soon.

57 members of Congress co-signed the bill last year. This is a great start, but we need your support and the support of your communities to drive more co-signatures.

Here’s what you can do RIGHT NOW:

Contact your representative (for the first time – or again!) about supporting and co-sponsoring this bill. 

Yes, you may have done this last year, but you may also have a new representative in your district or your representative may not have heard you the first time. Every. Voice. Matters.

FDA Goodness:

Clinical Considerations of Risk in the Postmarket Environment

If you care about the medical devices that we use each day to manage our diabetes (think insulin pumps, CGMs, blood glucose meters) and the risks that we take (and how to mitigate those risks), then sign up to be a part of this workshop. This will be webcast, so you can participate from the comfort of your home or office, but sign up ASAP. Registration will close on April 13th. Those in the DC area should know that you can attend this in person on the FDA Campus. Here are the details:

The FDA has announced a public workshop entitled “Clinical Considerations of Risk in the Postmarket Environment.”  The purpose of the workshop is to provide a forum for an interactive discussion on assessing changes in medical device risk as quality and safety situations arise in the postmarket setting when a patient, operator, or member of the public actually uses the device.  For details and registration, please see: http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm436365.htm

Date, Time and Location:

This meeting will be held April 21, 2015, beginning at 8:30 a.m. at the following location:

FDA White Oak Campus
10903 New Hampshire Avenue
Bldg. 31, Room 1503 (the Great Room)
Silver Spring, MD, 20993

Get some knowledge and take the world by storm. We can do this together!

Gang of Four (Meme of Four)

There's a story behind why I'm called Teapot. (And no, I"m not telling you.)

There’s a story behind why I’m called Teapot. (And no, I”m not telling you.)

I’m a little crazy right now with the final preparations for The Diabetes UnConference, so thankfully there is a meme called Meme of Four going around the DOC (Thanks to Stephen and Kerri and Laddie and Scully…) that I am totally going to do because my brain is mush.

Enjoy.

(Gang of Four is a band. They’re pretty good. I immediately thought of them when I read the first Meme of Four.)

Meme of Four

Four names people call me other than my real name:
1. Christi  – My nickname when I was young, until three girls in my class were all called “Christi” – we had to go by our full given name. I reverted back and forth throughout my life, depending on my location and how tired I was of trying to get people to pronounce my name correctly.
2. April  – Aprigliano gets people really confused. My first name sometimes becomes April in emails from strangers.
3. Marsha  – Marchand. See April above. Same issue.
4. Teapot  –  In my 20s, that became my nickname to some friends and family members.

Four jobs I’ve had:
1. Sales & Marketing representative for Nabisco (Planters & Lifesavers Division). My home office smelled like Cotton Candy Bubble Yum (all those samples!) and I always had a case of LifeSavers in the back of my company car. I never ever had a problem finding something sweet when I was low.
2. Chamber of Commerce Executive Director for the nation’s largest active-adult community. I loved that job and the people I got to meet; the business owners and the residents of the area were amazing.
3. Collections agent/skip tracer for a large credit card company. It was scary how good I was at getting people on the phone, even after they avoided other collection agents. No one expected a sweet voice asking for “Bobby” to not be his friend.
4. Target Cashier. I lasted three weeks.  Approved! Just… no.

Four movies I’ve watched more than once:
1. Bladerunner – Sci-Fi nerd.
2. Valley Girl – I was young and Nicolas Cage had real hair.
3. Monsters, Inc. – It comes with being a parent.
4. La Femme Nikita – The French original version, not that horrible US version or the horrible TV show.

Jitterbug_PerfumeFour books I would recommend:
1. Neuromancer by William Gibson – If you are a Sci-fi/cyberpunk nerd, this is required reading.
2. Lamb (The Gospel According to Biff) by Christopher Moore – Hysterical and eye-opening.
3. Jitterbug Perfume by Tom Robbins – Love, immortality, and beets. Yeah. Beets.
4. Hitchhiker’s Guide to The Galaxy by Douglas Adams – Or anything by him. I miss him.

Four places I’ve lived: 
1. Montréal – smoked meat sandwiches, poutine, St. Viateur bagels, tortière …sigh.
2. New England – lobster, baked beans (both the candy and the real thing), clam chowdah… sigh.
3. Atlanta – The best doughnuts in the world. Hands down.
4. Germany – Quarkbällchen, Brötchen mit Speck und Ei, Glühwein, Schweinehäxe…sigh.

Four places I’ve visited:
1. Isle of Skye
2. Aruba
3. Praha
4. Reykjavik (Ok, just the airport. But I’m going back.)

Four things I prefer not to eat:
1. Things that are still alive
2. Oysters
3. Sweetbread (you would think that it would be just sweet bread, but OH NO!)
4. Gloopy food with bits in it

Four of my favorite foods
1. Crème brûlée
2. Lamb
3. French onion soup
4. My Mémère’s Stuffing – it’s a meat stuffing with celery and spices and potatoes. I grew up eating it and before she passed away, she taught my stepmom how to make it (which she does… just for me.)

tv-spiralFour TV shows I watch/(ed)
1. Battlestar Galactica (The newer one… and to this day, I’m still upset with the way they ended it.)
2. The Avengers
3. Engrenages (Spiral) - John says that if it has dead bodies and cops in it, Christel’s watching it. He is correct. Bonus because it’s in French with subtitles and not dubbed.
4. Odd Squad/Curious George/Anything on PBS that is for kids. Because, you know… The Kid runs the TV.

Four things I’m looking forward to this year:
1. Diabetes UnConference – Duh.
2. The Kid turning four, despite our pleas to not get older.
3. The launch of a major project later this year for people with diabetes.
4. A trip with my family…and some time alone with John.

Four things I’m always saying
1. “Really?!?!”
2. “We can’t go outside if we’re naked.” (The Kid hears this phrase daily.)
3. “How can I be out of Diet Coke?!”
4. “Let’s do this.”

A House Divided…

Symbol home from hands isolated on whiteWhether you want to attribute it to Lincoln’s famous speech regarding slavery or a line in the New Testament (Mark 3:25), I’m repeating it for all of us to hear:

“A house divided cannot stand.” 

I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.

It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.

Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.

Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.

The Divided House

I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.

Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.

But this community, this house I love, is a house divided.

Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:

“I’m sick of the public thinking I’m Type 2.”

“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”

“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”

“My son did nothing to deserve getting Type 1.”

“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”

“I’m not like them.”

 But you are. We all live in this house.

The Numbers Don’t Lie, But They Are A Little Fuzzy

Here are the latest numbers, taken from JDRF’s General Facts page and the National Diabetes Statistics Report 2014 from the CDC. (It’s pretty. With graphics. And it’s a PDF so you can print it out and put in on a bulletin board. Or maybe that’s just me.)

Who Lives In Our House

29.1 million people have diabetes in the United States.

21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.

3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)

The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)

The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?

Our House is Getting Crowded

1429629_22426307Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.

Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.

Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?

  • Is the exterior a hodgepodge of different colors, because we couldn’t decide?
  • Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
  • Do we have an inviting path to greet everyone who knocks?
  • Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?

I do not want a diabetes house divided.

I want a diabetes home.

Home, Sweet Home

1278626_89193909How can you help make our house a home?

  • Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
  • Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help – or hurt – people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
  • Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
  • Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…

Help build our community.

Help build our home.

Help make a home for everyone impacted with diabetes and let the world know that we are united.

 

Diabetes Diagnosis Increases Psychiatric Disorder Risk

KONICA MINOLTA DIGITAL CAMERAI understand that scientific studies must be completed so that it can become more than anecdotal evidence. These studies need to be published in reputable academic journals, showing the researchers have followed the proper protocols to get to the conclusion.

But for this latest study, I could have saved everyone a lot of time and money.

This starkly titled study was published on February 3, 2015 in ADA’s Diabetes CareRisks of Psychiatric Disorders and Suicide Attempts in Children and Adolescents With Type 1 Diabetes: A Population-Based Cohort Study.

A large study in Sweden assessed children diagnosed with T1 diabetes and their healthy siblings over a longitudinal study (and also combined a comparison to the general population). Upshot? Here it is:

Children with type 1 diabetes are at high risk of psychiatric disorders, which seems to be a consequence of the disease rather than due to a common familial etiology. The results support recommendations on comprehensive mental health surveillance in children with type 1 diabetes, especially in recently diagnosed children.

In their research, the investigators found the risk for psychiatric morbidity tripled in the first six months of diagnosis. Even long-term, it was still twice as high for the entire observation period compared to the control subjects. I could have told them that.

No Surprise

For a child, a Type 1 diabetes diagnosis is traumatic. (Yes, it’s traumatic for the whole family. Let’s focus on the kid right now and what she/he thinks.) You go from being fine (or your concept of fine) to being told that you have an incurable disease that you can, at best, manage well enough to avoid major complications. Of course, you’ll have to be diligent, stab yourself with needles and lancets, and despite your best efforts, you may still get complications. You tell me if that would send you to your happy place…

I was diagnosed in 1983. Less than 24 hours after my Type 1 diabetes (it was called juvenile diabetes back then) was confirmed, I was in Joslin Clinic’s inpatient Diabetes Treatment Unit where I spent 11 days being indoctrinated. I was too busy learning about insulin and exchanges and sick day rules to really think about what the long-term impact on my life would be.

When it overwhelmed me, it wasn’t in the first six months. In my experience, my medical team and my family worked hard to prepare me for the long slog ahead to the best of their abilities. I know that I was loved and that I was educated in my disease. It took a year and a half, away from my family for an extended period of time on my own.

After the “novelty” of this diagnosis wore off, my head went to very dark places. I would have gone spelunking because I was a teenage girl, but diabetes gave me exclusive entry to depths that most kids don’t reach. Instead of crying over a crush, I was crying over a shortened life span and all those complications that everyone’s grandmother had. Guilt over blood sugars and A1Cs and feeling judged had me questioning my self-worth. My inability to get my blood glucose levels under control (thank you, puberty) for very long played a part in how I felt day-to-day. How the hell was I going to do this every day for the rest of my life?

We Can’t Do This Alone, But We Are Alone

898781_96304223I’ve never kept my bouts of depression a secret. It is liberating to talk about the things that scare you, as long as you know you feel safe. I have had some incredible medical professionals who have led me out of the dark places. I have some wonderful fellow T1 talkers who shine the light on the strong connection between T1 and depression. We can’t do this alone. It’s exhausting. And terrifying.

You can have the best cheerleaders on your team, but they’re not going to win the game for you.  (That’s as close to a sports metaphor as you’ll get on this blog. Go team!)

 

Parents go through their own private hells when a child is diagnosed and I encourage any family to get counseling to talk through the tough times. (Think about the siblings who can become jealous because the T1 kid gets all the attention. I’m grateful that my brother wasn’t like that – at least that I know about.)

But in the end, it’s us. We are alone. The Type 1 child, no matter how protected, loved, educated, watched over… when we close our eyes at night, we think. And dream. And wonder. Sometimes, we travel to dark places. Some of us don’t want to come back. And that’s when it’s crucial that we have people who help us.

Researchers needed to do the studies to tell the medical community what we’ve been telling them for years. It’s not all in our heads. We are at risk simply because we have diabetes. We need a holistic medical team for every T1 child (and dare I say it, T1 adult): someone to teach us how to use insulin and count carbs and someone to teach us how to live our lives with diabetes in a healthy way – body and mind.

If you (or someone you know with Type 1 diabetes, especially those who are newly diagnosed) need help, please… talk with your medical team about your thoughts. There are options and support groups and professionals… For your children who have been diagnosed, please understand that no matter how much love you show them, they may need outside help that you can’t give. That’s OK. Really, it is.