My Pregnancy Announcement

Ladies and gentlemen, boys and girls… big news.

This is my pregnancy announcement.

Surprised?

You shouldn’t be.

Women with T1 diabetes can have healthy babies. Healthy pregnancies. It can happen.

If you are a T1 family (of one or more, seeing as how I feel having a baby as a T1 involves more than just yourself…), join Glu on September 28th from 5:30 – 8:00pm.

 

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Attending In Person

If you can attend in person, you’ll go here: 11 Avenue de Lafayette, Boston, MA after sending an email to: gluevents@myglu.org

Attending Virtually

They will be broadcasting it live through a super cool feature called blab.im. Register at the email above to get the details.

Want to get your questions answered?

Here is the link where you can submit questions up to a few hours before the event starts. https://blab.im/glu-t1d-exchange-type1-diabetes-and-pregnancy

I’m proof that T1s can have successful pregnancies and have amazing babies. There is so much bad information out there, so let’s change that. 

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The Kid thinks this post is funny, because she is definitely going to be an only child (and she likes it that way.)

My pregnancy announcement is this:

No. I’m not pregnant. Seriously. 

My 9 Rules for the DOC #DOCBurnout2015

DOCburnoutDayMany of us talk about the power of the Diabetes Online Community, a virtual entity that has grown organically over the past 10 (or so) years. If you’re looking for support, advice, experiences, kindred spirits or an answer at 3am, you can reach out through your keyboard and find someone almost immediately. We share ways to connect, communities that center around diabetes, and resources to make daily living a little easier.

But few of us talk openly about the underbelly of the Diabetes Online Community: the shaming, the bullying, the misconnects, and the frustrating attempts at feeling accepted. That’s why Diabetes Daily suggested that today, we share our thoughts and experiences using the hashtag #DOCBurnout2015 on social media. I’m hoping that we can stop the shaming and bullying within our own support system and help those who feel excluded rather than included.

My Experience

My experience is different than most when it comes to what we now call the DOC. My early forays into connecting with others through diabeticfeed, the podcast John and I started in 2005, put me in touch with some of today’s heavy hitters in the community: Kerri, Scott, Amy, Manny, Bennet, Kelly, Wil, and so many more – all who I’ve grown to love and think of as family. The community was young, small, and tight-knit – and reaching out to each other, while not easy, was gratifying.

As I’ve mentioned in other posts, my career and personal life shifted my focus away from the DOC for a number of years. I didn’t connect as much, didn’t do as much, and while I cared about the community, I wasn’t actively participating. When I decided to “come back” and be active, I wasn’t a newbie, but there were (are) a lot of people I didn’t know who had become integral threads in the fabric of the newer DOC. I was an “old newbie” and it was weird.

I was grateful to be welcomed back by many, but there was also an undercurrent of “Who the hell is this chick? Why the hell should we care who she is?” And rightfully so. As far as most people were concerned, I was like the kooky aunt in the attic that no one talked about anymore. “Ohhh… so you’re the Christel people talked about.” (To be fair, no one said “kooky aunt” outright, but I had a few interactions with people online and face-to-face that didn’t leave me with the warm fuzzies.)

Over time, that feeling has mostly dissipated, but wisps of discontent drift up occasionally online. It’s like every community: no one will be happy all the time. But I’m seeing a rising tide of discontent and I’m calling it out. It’s bullying. 

Bullying

  • Bullying a person in the diabetes online community over their choice of treatment plans or what type they have is unacceptable.
  • Bullying a person for giving their time and support to help others in the diabetes community is unacceptable.
  • Bullying a person for sharing correct medical information is unacceptable.
  • Bullying a person for having (or not having) medical insurance, medical devices, or access is unacceptable.
  • Bullying a person for making choices and telling them they’re stupid for making those choices is unacceptable.

I’m witnessing the bullying more and more online: Type 1 versus Type 2, LCHF versus paleo versus Dr. Bernstein versus “I’ll eat what I want,” pump versus MDI, Nightspot versus Share, “helicopter parents” versus T1 adults who were T1 kids… you name the discussion and there will be discourse and discontent.

Personal attacks are also unacceptable. I know of one individual who, without ever having met anyone in a particular diabetes FB group, was threatened with physical violence, suggestions made on how to make this person “pay.” I’ve been personally attacked in private messages on social media and I know of others who, simply by sharing their lives with diabetes openly, received emails that would horrify even the most hardened of hearts.

By now, I hope you’re thinking: “What the hell?!? Who does that?” (If not, please email me. Seriously. We need to talk.) And then I hope you’re asking yourself: “What can I do to ensure that I am helping and not harming the DOC?” (If not, please email me. See above.)

Here are my DOC Rules for Interacting with Other Human Beings:

  1. We are all human beings with emotions. We all bleed when we’re poked. (Some of us, literally. Hey – a reminder to change our lancets!) The words “stupid”, “ignorant”, “dumb”, or “idiot” should be banned in discussions within the community (even if you’re explaining an interaction with someone outside of the community (like a nurse or a doc or a stranger on the street).
  2. Think before you angry post. If you read something and you are angry and want to respond, do not bang out a response and hit send at the height of your anger. Walk away and then come back.
  3. Some people are new to the DOC. Be kind. They will ask questions that have been asked before. Help them find the information. (Know that employee in Home Depot who walks you over to the item you’ve been searching for in the wrong aisle? Be that person. Wearing an orange apron is optional.)
  4. Your diabetes is your diabetes (or your family member’s diabetes is your family member’s diabetes). If someone asks a question or is looking for support, answer the question and give support. Don’t be a jerk in your response. If you can’t NOT be a jerk, then move along and don’t respond at all.
  5. Share blogs and information you like – and that don’t give incorrect medical information or dangerous information. I love reading new blogs and learning about other people in the community – new ways of thinking about daily life with diabetes or new research that I want to share. (Hint: if the info has okra or cinnamon in it, keep scrolling….) If you find misinformation online in a group, notify the administrator and ask for its removal. It’s like the Smokey The Bear campaign: Only you can prevent bad information from spreading like wildfire.
  6. If you are bullied, walk away if you can as soon as possible. Do not engage, because sometimes, it’s exactly what that person wants: a reaction. I was always told that when children misbehave, it’s because they want attention: any attention, good or bad, is attention. If you react, then they got what they wanted. People will try to “hit and run” – send you a private message or an email, spewing their hate. Delete it. Block them. There will always be those who just can’t play nice.
  7. It is perfectly OK to step back if you’ve been hurt. It’s perfectly OK to apologize if you’ve said something mean and ask for forgiveness. Just don’t blame it on a low blood sugar. (Posting while low should be a term.)
  8. If you’re not connecting within the DOC, you may want to rethink your approach. Are you writing a blog and expecting people to flock to it and praise you, but no one knows it exists? Are you constantly posting negative comments in a group but not giving support or asking for opinions? Do you focus on one thing about diabetes and bang that drum every day in the same chat board? Do you gloat or act smug because your blood sugars are always in range and you never do anything wrong and tell everyone that when they share their experiences or ask for advice? Do you pick fights with other PWDs on Twitter or FB? Do you make fun of family members or others online who don’t have the knowledge about diabetes that you do? Take a step back and look at your interactions. Are you helping… or hurting others?
  9. Remember why you wanted to connect with the DOC in the first place. For me, it was simply this: I was alone. Reaching out to others who had the same chronic illness and learning from them helped me to be stronger, more resilient, more knowledgeable about diabetes. What’s your reason for wanting to connect? Keep that close to your heart as you connect with others.

Stepping Away

Sometimes you need to step away. It’s OK to step away from the DOC. I did, and I came back. Others have stepped away and are missed. Burnout is real.

Until there’s a cure, we’ll not going anywhere and we’re trying to keep our community uplifted and supportive. When you want to come back, we’ll be here… most of us with open arms. Those whose arms aren’t open?

Well…group hug for them, too. They probably need it the most.

Share your suggestions and thoughts about #DOCBurnout2015 at www.diabetesdaily.com and Diabetes Daily’s FB page.

 

It Is Better to Burnout Than to Fade Away… (with Diabetes)

Neil Young is perfectly correct when he sings this….

“It is better to burn out than to fade away…”

– Hey, Hey, My, My from Rust Never Sleeps

I feel this way when it comes to diabetes burnout in general, and I had my own brush with online diabetes burnout a few weeks ago. Fading away (just ghosting from the online community and not coming back) is real. A few of my peers have done exactly that over the past ten years since the DOC took shape and I wonder sometimes what happened to them.

Did they have a bad experience online? Did they find they couldn’t connect or get their voice heard? Did they really intend on fading away… or are they just burned out?

DOCburnoutDayOn September 1, 2015, Diabetes Daily will be hosting the first ever Diabetes Social Media Burnout Day...a day in which we can all blog and discuss how we “personally maintain our own emotional wellbeing within the bustling, passionate Diabetes Online Community.”

Here’s the challenge: Think about how you deal with social media issues relating to diabetes and how you internally deal with it.

Do you shut down? Step away? Dig in? Reach out? Do you have a story to share? Do you have advice?

You don’t have to have a blog to discuss this topic.

This is what Diabetes Daily is asking all of us to think about:

“Do you take breaks? Have you been the target of an attack? Felt bullied? Unappreciated? How do you heal, endure, recharge, or reconnect to find your own happy balance within this powerful and tremendous community? Share your tips for thriving/surviving burnout in the DOC on your blog, and in the comments section on DiabetesDaily.com’s burnout blog on September 1, 2015.”

#DOCburnout2015

And because the DOC isn’t just about blogs, you can share your thoughts on Twitter and Facebook using the hashtag above.

Fading away is OK. Burning out shouldn’t be.

Let’s think it over and talk about it on September 1.

Cursing The Darkness

candle-1421437-639x847“It is better to light a candle than curse the darkness.”

I allowed my candle to be snuffed out last week and spent a few days cursing the darkness.

Social media is a two-edged sword. It allows me to connect with like-minded individuals, transforming what can be a lonely existence with a chronic illness into one filled with support. Strangers become confidants and sometimes even lifelines. Communities blossom, become stronger, make the world a better place with the addition of social media.

It can also suck. Strangers can also become critics, seeking attention through negative attitudes. They prescribe to the idea that they can be wrong at the top of their lungs and someone will listen and believe them. There’s an entire world out there that is fueled by the perpetuation of misperceptions. (Helllooooo…. Crossfit.)

Normally, when faced with an Internet troll, I remind myself that keyboard courage is a real thing. People hid behind a computer and say things they would never say standing in front of that person. These individuals simply are unable to have a civil conversation online. ‘Bow gracefully and step away’, I mumble to myself. ‘You have other things more worthy of your attention.’

I got caught with my computer pants down. Coming off of a few weeks of traveling and intense conversations with people who matter, I was emotionally and physically drained. Out of nowhere, there were a few social media interactions that pushed the boundaries of politeness  went for the jugular about what I was doing, who I thought I was, and my place in the community – from more than one person in the space of a few hours.

Let’s get this straight: I am no angel.

black-and-white-eye-1254497-640x480I am not altruistic; The Diabetes Collective and the Diabetes Patient Advocacy Coalition are passions of mine because I benefit directly from my efforts and the efforts of others. I have been told (by both friends and employers) that I can be condescending, passive-aggressive, abrasive, aggressive, and a few more “you’ve got to work on your ability to work with others.” I run with scissors. I can be quick to anger. I can be an asshole.

Take them all as character flaws and know that I am acutely aware that I am not perfect. (Helloooo… title of my blog?) But… I’m a perfectionist, holding up impossible standards that I will never reach. Diabetes makes anyone with perfectionist tendencies feel like a failure. It’s taken me a long time to get over that.

I am also incredibly sensitive, want to be loved as much I as love others, seek to learn from my mistakes, and extend a hand to help whenever it’s needed. It took me years to laugh at myself or not spiral into anger or sadness when someone picked on me. (I was/am easy pickin’, too. I’m tiny with a weird name.)

Bone weary, drained, thinking intently over the previous few days “where do I belong in this growing community?”, and the tacit confirmation of a friendship lost set me up for a wailing wind that blew through my soul and snuffed the candle I work very hard to keep lit.

Cursing the darkness, I let it be known to my group on friends on Facebook that I had reached my limit of putting myself out there. I was done sharing, done being passionate, done. Just done.

It’s cold in the dark. Quiet. Isolated. It’s not where I like to be and there are moments that I think sharing my story and my life openly on this blog and on social media puts me in danger of having my candles blown out. We’ve all seen the damage that social media can do to one’s psyche. It happens every day.

My beautiful friends, being who they are, responded with soothing words and candles of their own to light the way out of the dark for me. I am grateful to them.

This is why the blog has been quiet as of late. I’ve had to do some much needed introspection and think about how I reacted and how I would react in the future if this happened again, which we all know, social media being what it is, probably will.

I don’t have answers, but thanks to people who know who I am (sometimes better than I do myself), at least I’m not cursing the darkness.

 

 

 

DPAC – Diabetes Patient Advocacy Coalition: Why?

Your day just got a little more exciting.

Why?

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You can make a difference…in not just your life, but the lives of 29 million Americans and their families, friends, and employers.

Wait! Don’t sip your coffee and click to the next tab on your browser. (Sip your coffee and keep reading.)

If you are like I was (not too long ago), the thought of diabetes advocacy was simply this:

“Like I have time. Someone else will do all the hard work. Whatever.”

Now…

  • What if I told you that someone did all that hard work for you?
  • That advocating for yourself, people you love, heck… anyone in the U.S. with diabetes is now simple, easy, and quick?
  • One website to learn about the issues impacting people with diabetes being decided by lawmakers and governmental agencies and then tell them quickly how you feel?
  • A few clicks and you’re done, but you’ve helped the diabetes community and become a diabetes advocate?

Allow me to introduce the Diabetes Patient Advocacy Coalition (DPAC) and invite you to join me and others who care about our community.

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Who is DPAC? You are. I am. We all are.

 

DPAC is a non-profit and non-partisan organization founded to provide united, simple, and effective advocacy opportunities for people impacted by diabetes for safety, quality and accessibility of care.

And there is no cost to be a part of it.

Sign up and take action immediately from the comfort of your keyboard. You won’t have to figure out who your government representatives are or how to contact them – it’s done for you. After you quickly learn why it’s important to let them know how you feel on a diabetes issue, you just… Click. Click. Done.

I don’t think I’ve ever met anyone who said: “I’d like to spend my day reading over proposed legislation and policy all day.” I certainly don’t. DPAC does that for you, boiling it down to the key points that you need to know.

Why?

Why bother to join? Have you ever been to a concert where the booming sound from the speakers drowns out a conversation you’re trying to have with your friend? One conversation gets lost sometimes.

Have you ever been to a concert where the singers asks the crowd to belt out the chorus of a song? When everyone is raising their voices as one… the whole audience is heard. That booming sound comes from the people in the crowd. We are that crowd.

The diabetes community deserves to be heard by our policymakers as a united voice. 

Why?

1434784_54457950Why join the Diabetes Patient Advocacy Coalition? I already do stuff with other diabetes organizations, you say. How is DPAC different, you say?

DPAC will keep policy makers’ attention on people with diabetes. Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes. 

Every diabetes organization has a mission; sometimes the mission and the issues that need to be addressed don’t align. Organizations may support one bill and not another – and that’s fine! Some wonderful diabetes organizations are constrained by their non-profit structure, preventing lobbying or the type of advocacy that pierces the heart of the matter.

DPAC is pro-diabetes, pro-existing organizations, pro-getting our diabetes voices heard by policymakers – and that’s the sole focus. Where there is already a movement by one wonderful organization, DPAC adds to the swell. Where an issue is not being given the spotlight, DPAC will shine the light. DPAC doesn’t want to re-invent the wheel; they want the wheel to go faster and gather steam.

If you’ve heard me mumbling over the past few months about a project that I’ve been working on… this is it, along with Bennet Dunlap and some pretty fantastic people and organizations. I’m all about making diabetes advocacy easy – and now it is.

Help raise a united diabetes voice and become part of DPAC. Come join me.