Opening Up and Getting Real: The One Where Adult Burnout is Addressed

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That’s right, in honor of Diabetes Awareness Month, and in realizing there is more to say, I’ve decided to fire up the good old blog. Sure, blogs are old fashioned now, but in this diabetes life, there more to say than we can fit in an Instagram image. A new addition: my now adult daughter will now also be a regular contributor. This first “back to blogging” post comes from her. Read on. As always, I find her courage to be amazing. — Moira 

For my entire life I have been an open book. This is especially true with my diabetes life. If you’ve read about me (from me, my mom, whomever), you probably think you know my diabetes experience well. And for the most part – good or ugly – you do. But there is one thing I keep very hidden: the loneliness, guilt, and overall mental endurance it takes for me to live with this disease.

Let me give you a little background. I have been living with diabetes for 21 years. I was diagnosed at age six, went through the whole teenage burnout phase, successfully went to college 500 miles away, and came out of the burnout phase and have a flourishing career in Washington, D.C. By the time I was 25 I thought I had it all figured out. This isn’t that difficultI often thought to myself. I would frequently question why I was the way I was when I was a teenager. I should have just tried a little harder, I thought, judging my teen self.

This past May, I went through a break up; an unexpected, dumped via text by my boyfriend of 2.5 years kind of break up. Instead of getting bogged down by this, I made the decision to enjoy my summer and see it as an opportunity to focus on myself. Because really, it was clear almost right away we did not belong together. But here’s the thing: I did not realize how much I relied on my ex-boyfriend to assist me with day-to-day care until I was back to managing it on my own. Without that daily support, the burnout slowly eeked back into my life.

First, I didn’t want to wear my pump anymore. Then, I didn’t want to wear my CGM. Then, I didn’t want to check my blood sugar via finger prick six times a day. And I remembered why burnout was so easy to slide into: I cannot describe to you how incredible it feels to just ignore my diabetes management. Whenever something difficult happens in my life, I want to put diabetes in the back seat. It is like by freeing my mind from diabetes, (despite the sick feeling of out of wack blood sugars), I am free to focus on the rest of my life. It’s a powerful urge, and one I had learned to ignore before. But this summer, I gave in. Old habits die hard.

My burnout as an adult is completely different than my burnout as a teen, but it stems from the same addiction. The irony is: I am led to it by a nearly unquenchable desire to be free of diabetes, and yet I feel my loneliest when I am in these burn out phases. I cannot describe how alone I feel when I think about how I will be dealing with diabetes for the rest of my life. Yet, In my lonely, dark space, I feel content. It is a familiar place, but I am not happy. I am not sleeping well, I am having a difficult time focusing at work, I am emotional. I think about diabetes way more than I do when I am laser focused on my care. (Do you see the irony there?) I don’t want to be a burden to my friends and family by complaining to them about how difficult it has been for me, so I find myself lying to the people who love me about how I am doing. I wake up everyday and say, I will focus on my diabetes today. Nothing changes.

Then, a few weeks ago, I saw a tweet:

Wow. I am not alone in this dark place.

The diabetes community has taken strides in addressing the needs of teenagers with burnout, but what about us adults?  Since seeing this tweet, I have thought about the mentality of living with diabetes a lot. We look at our CGM downloads and labs over and over again, but we never discuss how much it takes a toll on our mental health.

I reached my breaking point. I called my mom on my way to work and confessed that I wasn’t doing well (thank you to all of the nice people who saw me sobbing and didn’t give me dirty looks, I guess it’s normal to cry walking down the street in D.C.?) I am fortunate that she is calm and understanding and has helped me develop a plan to get back to normal. But what about everyone else? And why did it take me months of feeling this way before I felt I could confide in someone? I think that is time for the diabetes community to focus on mental health.

Right now, I have to work my way back out of this burn out, very much like an addiction, starting with step 1. Later, when I move back to a place of relative peace with this insipid disease, I’m going to work at finding ways to help adults. Until then, as always, Ill be an open book. If I can fight my shame and be open, perhaps more will follow.

Thank you, Lauren, for your honesty and willingness to share the good and the challenging to benefit all. 

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21+15=105: An epic birthday planned: Blinged-up Hope!

Okay, okay. I was kind of an anti-ride person back in the day. But you know — a lot has changed. The folks who care deeply about it have tightened things up and made it run like silk. And slowly, my life has changed. Back in the day, when Lauren was little, we could form a walk team and expect, without worry, at least 120 walkers and $30k raised that day. Now she’s a young adult, and most of her good friends are, like her, far away in college. It’s just not easy to do a walk team anymore.

I'm doing this for my crazy, happy gal who knows that sometimes -- a cat IS the hat!

At the same time, as you’ll read in the link below, we are coming up on a huge milestone. My baby girl will be 21, and at just about the exact same time, her diabetes will be 15. I need to do something remarkable; something meaningful and impactful. So I’m going to ride. Ride 105 miles through Death Valley. Ride to CURE diabetes. Please click on and read. I hope you’ll find it in your heart to donate today –even the smallest donation is HUGE so don’t be shy…… just do it. I want to work up to the fall and make Lauren’s 21st one that not only makes her smile, but helps change the world. Here’s the link. More to come later — such as AMAZING auction items and more ways to give again (in ways that will not hurt you!)

I am doing this for Lauren. But I’m also doing it for us all. If you have someone you love who needs a cure — please donate. If you are blessed enough to not have diabetes in your life, please donate. If you are in a good mood and just wanna share, please donate. If you are in a lousy mood and need a lift, please donate.

I deeply appreciate ANY donation, and hope you’ll consider doing so a few times between now and October — did I mention I decided to do this before the ride date was set — and the Ride is on MY birthday? Chills. Here goes:

http://www2.jdrf.org/site/TR/Ride/JDRFNationalRides?px=1267496&pg=personal&fr_id=1763

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Perfect for today …. a reblog. Have a great Easter.

despitediabetes

It was a week before Easter a few years ago and, as tends to happen quite often, I was enjoying a cup of coffee and a good chat with my long-time dear friend Anne. You see, that year she “joined the club” when her son (the baby who won “youngest walker” on my daughter’s JDRF walk to cure team just 11 years prior) was diagnosed with Type 1.

This day, she wanted to talk about what was weighing on her mind: “Moira. What do I do about the Easter Basket?”

“Oh that’s easy,” I told her in my usual D-Mom who’s-been-through-it-all tone. “Get him a pony. A real, live pony.”

I was only kind of kidding. Because from the start, there was something about that silly Easter Basket that tripped me up, brought me to a strange level of dread and in the end, opened me up to the challenging…

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#WEGO #HAWMC Day Five: Random flickr picture

 

 

I am participating this week in the WEGO health writer challenge. Today’s assignment was to go to flickr and let it choose a random photo, then write about it. Here goes.

Here is the photo that flickr randomly chose for me. It took me about a millisecond to know what I was going to write.

 

Riding – horseback riding – was a big part of Lauren’s growing up. And despite diabetes, she got out there and rode a few times a week as a little, little girl. Without me. Without a nurse. Without worry. Without hesitation. With joy.

I loved that I knew little about the sport itself, or the amazing place she got to do it in. Called, “Little Forge,” it was tucked into a rural part of our town. There, she told me (and I only saw the street side; this was truly her world), they could ride across fields of flowers, or ride for what felt like forever in the woods, or ride right into a pond and let the horses swim – all while still on their backs. I kind of loved how it was a place that, for me, existed only in her stories to me. It was her world; hers to share what she wanted but keep close what she chose to protect. For a girl whose entire world was her mother/caretaker’s to pick over, stress about and plan to the minute, that must have been cool for her. Anyway,  it all sounded magical to me, and from the look on her face every time she went there and every time I picked her up, it must have truly been.

Mind you, I made sure she had what she needed on her. Glucose. A meter. The works. But she tucked it into a backpack that she could barely feel and she just set herself free out there. I imagined her in the woodsy sun, galloping away, hair flying in the wind, smiling.

When I dropped her off, I didn’t even wait around. Somehow, the beauty of the spot lulled me; convinced me that not only would my little girl with diabetes be fine, she’d be amazing out there.

And she always was.

There were funny times too: like the time she fell off her horse as I was watching – there to pick her up – and got caught by her pump tubing on the saddle. She was hanging from it! It was pretty hilarious. Or the time the JDRF national office sent a professional camera crew to film her time at the stables. She got thrown. And broke her ankle. All while the cameras whirred. (They did not use that part).

Thinking back, I realize: when I wasn’t there, these things did not happen. Could it be the universe was trying to tell me, even way back then, that the best thing I could do for my girl was to let her live a full life despite diabetes?

Lauren does not have much time to ride nowadays. She’s far away in Washington DC mastering other dreams. But in a way, it’s kind of the same. I drop her off and pick her up but really, I cannot see her. Her face when I do is alive; as if she is in some magical place; one I don’t quite know all about. And in a way, she is. There are her new friends. There’s an amazing city. There is all she is learning in her classes and internships and sorority life and more. I hope she tucks what she needs in her backpack out there, but I’m happy and lulled by the beauty of it all. Because I know my girl will be fine. She’ll be amazing

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#WEGO #HAWMC Day Four: Why I Write About Health

I am participating in the WEGO prompt week, along with other health bloggers from around the world. It’s pretty cool and you can follow it all at WEGO on twitter and on line!

When Lauren was diagnosed on that autumn day almost exactly 14 and a half years ago, one of the first thing my friends said was this:

You can – and will – write about this.

To which I answered, with no hesitation: Never. Never ever. Writing was something I did to earn a living. It was also something I did because I loved it. I could not imagine “using” Lauren’s diabetes to make a buck; nor could I imagine letting this disease, which was taking over my life in so many ways, seep into the vocation I loved.

I’d been a writer for just about as long as I could breath. As a tiny kid (back in the pre “Adam” days when parents would let their kids go to the toy section while they shopped Jordan Marsh), I always chose to go to the book department instead. I think I was seven when I started anticipating the annual announcement of the Caldecott and Newbery Medals for the best children’s books. I actually gave short stories and poems to friends as birthday gifts before I was even 10. (I’m sure they expected a Mr. Potato Head. Hopefully they didn’t mind). In fifth grade, I stood up on career day and announced I’d be a writer for SKI Magazine one day. No lie. Writing was as much a part of me as, me.

The girl who was determined to become a ski writer. (Posted by the adult who wishes she could still do a split on skis)

Before D, I’d been a newspaper editor, a bureau chief for a large daily paper, a crime reporter, a feature writer, an award winner, a magazine editor, a ski writer, a daily newspaper editorial columnist, an author, and more. I loved my writing career. I cherished it. So I had the fierce desire to protect it from D. My daughter used to protect her left hand baby finger from D. She’s hold it up and smile and say, “See? Diabetes has never touched this.” (And I so felt for the ICU diabetes nurse who quietly checked her one night….on that finger. Lauren snapped out of her sleep and sobbed, “You let it take it. You let it take it.” Yes, my writing was like that baby fingertip.

And yet, diabetes seeped in. The first time I ever remember writing about it was in 1999, the first year we “truly did” the JDRF Walk (it was actually the JDF walk then). New to it all, we were told letters help. Lauren wrote one in her childlike way, and I wrote my own. I poured my soul out, on paper, for the first time. Licking the envelopes (that was a long time ago!) I wondered if it was worth it, letting diabetes touch my writer self. The answer poured into the mailbox: in the end, over $30,000 from friends, all to help find a cure.

The first time I went way public with writing about it was in 2002. It was Lauren’s five-year diaversary and I wrote a long email to then JDRF President and CEO Peter Van Etten, the man leading the charge toward the cure and a man I considered, at this point, a good friend. (When you’re a powder skier, you bond quickly). He, in turn, forwarded it to the entire JDRF universe, staff and volunteer alike. He marked it “must read.” It was my first experience with “Going viral,” and that was before facebook.

And I realized then I could use my writing not to profit personally, but to help in two ways: to build funds for a cure and to help others know they are not alone.

But still. Two things were rock solid: I would never write a book about diabetes. And I would never, ever blog.

Never say never.

The book came via a ski world friend, and my agent Gina. A large publishing company was looking to do a book on raising a child with diabetes. Both felt it had to be me. I said no way. In time they turned me (by helping me see I could send my profits directly to JDRF and by showing me some scary resumes of others being considered. Tree bark cure, anyone?)

So I wrote it. It was like thowing up knowledge. I pounded it out in seven weeks, those 300-plus pages, and to this day it’s a hot seller. I am still a tiny bit embarrassed, but when I meet parents with dog-eared copies who say “You helped me at my darkest time,” or when I see another check being sent to JDRF, I’m okay with it.

My first diabetes book. Who knew I'd get more from it than I ever imagined?

And then there was blogging. Why the hell, I thought, would I ever blog? I was, for a long time, a pretty well-known leader in the diabetes volunteer community. But I was from the “pre-on line age.” Time ticked away and suddenly, I was no longer as relevant. And the one thing that keeps me going – by fueling me with new knowledge, contacts and information – is being relevant.

So last spring I caved. And started blogging.

It’s strange how it satisfies me. I’ve written for publications that millions read each day. I’ve had articles nominated for prestigious national awards (and won them). Yet when I see the “stats” tick upward on a particularly relevant post or when I get a note from a D mom like I got yesterday (“It’s like you looked right into my soul,”) I feel relevant. I feel empowered. I feel like I’ve made a difference.

My daughter, too, loves my blog. And with her 500 miles away and pretty much taking care of her own diabetes (I still do the scripts. Master of the customer service rep fight; that would be me), it’s nice for her to read what’s on my mind and for me to read what’s on hers when she responds.

The prompt question today was why do you write about your health, and what I wrote is about why I write about my daughter’s health.

I write because it makes me feel better. I write because it helps others. I write because it connects me to people and issues and programs.

But most of all, I write because it’s who I am. Diabetes has touched that part of me, but for the better. Who knew?

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WEGO HAWMC Day 3: Super Powers

Admittedly, I am two days behind in the WEGO health blogging challenge. But those who know me well know I have a sad and acceptable reason to have missed a couple of days (saying goodbye to a D friend we lost this past week). I will be writing on the WEGO prompts this month, and I promise to catch up. But here’s to stepping in and taking up today’s topic: Super Powers.

Usually I’d write something pithy and clever. Usually I’d say something silly but meaningful. But today I have one superpower wish to use in the health activism world:

The ability to make it yesterday. I say “yesterday” hypothetically, because what I actually mean is “before.”

Make it before.

 Make it before I knew the difference between a real problem and a ridiculous one (although I’m so thankful for that gift. I mean come on: how many of you in this diabetes and health-challenge world have snorted; hell, guffawed at a “problem” an acquaintance shared or posted?). Still, I don’t remember innocence anymore. I don’t recall a time when constant worry about filling scripts, making sure my child’s levels stayed semi-okay, helping friends who are in the same boat, learning about regeneration and beta cell replacement and artificial pancreas technology and just plain living diabetes wasn’t my life. Oh, and I forgot to throw in “acting like it’s not big deal.” And I’m just the mom – not even the patient.

This week I want to make it before because before, my beloved friend was alive. Before, I could count on her to help my daughter understand how to deal with things like drinking and diabetes or dating and diabetes or just plain becoming a young woman with diabetes. Before, I could see her. Yesterday, she was on the other line. Yesterday, she was a glimmer of the future. Yesterday, she was here for me to call or not call or ignore or think about in real time.

Before, preppy colored roses reminded me of a dear friend. Today, preppy colored roses make me miss a dear friend.

Before, I was not some kind of superhero expert on getting my daughter to the big city ER fast and then making sure they did exactly what she needed in an instant. Before, I didn’t turn off my compassion to make sure things just got freaking done already.

Before, my child was just another child, wondering if she’d need a shot at her next check up.

But then again, before, or yesterday (and in a way, 15 years ago seems like yesterday), my child had not blossomed into an amazing and outspoken advocate. She’d not yet become a beyond compassionate friend who would drop anything for a friend in need. Before, she had no diabetes camp friends. Before, she was not the young woman she is today.

And yet ….. I want it to be yesterday. I want innocence back. I want my friend back. Super power to me, today, is just as simple as that.

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It seemed appropriate for me today to repost this. While as always I don’t have a blue candle on my facebook page, I have one (actually A Clara Barton Camp Candle) burning in my heart this week. We’re all remembering an amazing young woman and struggling with how we will go on without her. But at the end of the day, I know she’d want each and every one of us to Go On Living. For you, my friend. How I’ll miss you, but how I’ll see your spark in all the young women who so love you.

despitediabetes

 

It is what we call here in D-world, another “Blue Candle Day.” If you are in the D-world, you know what that means. If you are one of my friends and readers who is not, let me explain: When a person with Type 1 passes away from a situation related to Type 1 diabetes, folks around the world change their FB profile pics to blue candles.

I don’t, only because my daughter and I communicate on FB constantly and I just don’t think she wants to stare that kind of thing down at this point in her life. Doesn’t mean my heart doesn’t break. Doesn’t mean I don’t care, and care deeply.

Today’s Blue Candle day comes from the sad and sudden death of a high school basketball player. According to news reports, he had a diabetes-related seizure and died. Didn’t say if it was in his sleep or…

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