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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Diabetes as your child transitions to adult: It’s hard to let go

Hi Guys — back from a blog break. I am really hoping to hear from some adults with Type 1 on this one — how much do you still need your parents and expect them to intervene for you? At what age did you begin to not expect accommodations? We parents (mostly me) can learn from you! The same goes for parents whose kids are now adults. One more aside: I am going to write out Type 1 Diabetes the first time each blog and then refer to it is T1D from here on in.

Lauren (second from left) with some of her Sorority Sisters. Her roomie (last on the right) knows how to help her if needed -- but Lauren taught her that on her own.

I was at an informational session on Type 1 diabetes recently and a presenter was talking about transitioning a child with T1D to college. Since I’ve done this (oops, just almost sprained my arm trying to pat myself on the back), I decided to sit in and here what the person (a medical expert) had to say.

I was a bit surprised. Because this person was suggesting to these parents just about all the same things we did for our kids in elementary school and high school. Meet with teachers. Explain Type 1. Ask for special consideration if you are high or low for a test. Have an adult or RA near you trained in glucagon administration.

And I thought: Maybe not. I don’t quite agree. And here’s why: College, as my daughter with T1D pointed out to me, is “practice for the real world.” And like it or not, the real world eventually becomes where our loved ones with diabetes dwell. There, for the most part, they are going to have to find a way to do their job or care for their kids or drive their car or the million other things an adult has to do, without special consideration.

At the same time, a mom of a high school girl with T1D was asking if her child should be excused from not being able to win swim sprints if she is low or high, and not be penalized on her high school team. It’s an interesting dilemma. After all, it really isn’t fair that diabetes gets in the way of things. But it isn’t fair that someone with one arm had to work twice as hard to swim fast either. I know that’s a basic example, but really, we are not the only ones dealing with things not being fair.

So the question is: when do we start to back off of fighting for our kids’ rights? In some ways, we never do. We want equal opportunity for employment. We want funding for research for a cure. We want better tools available for all. We want good insurance, darn it. We want people to, once and for all, understand our children did nothing to cause T1D to come on. We will fight until the cure for all of that. Some of the most passionate advocates I know on this earth are parents still fighting these fights for their adult children. (Leah Wooten  (the very first chair and engineer, really of the successful Promise to Remember Me Campaign ,  Lisa Reed and all of you parents of adults, take a bow).

But in other ways, the time comes that we have to just let them be, figure things out and yes, sometimes bite our lip when diabetes messes something up, “fair” or not.

It’s hard to swallow if you are the parent. For as long as they’ve had T1D, we’ve been their advocates, hammering out solid 504s, battling teachers who don’t get it, making calls on behalf of our kids to make sure situations are safe and right for them. Much as I’d love to be able to walk into my daughter’s first workplace and set up a safe, fair and embracing environment for her, (and find a spot where I can hide and pop out with glucose tabs or a correction shot whenever she needs it. I picture it like that desk nap area George Castanza built on Seinfeld. I’ll be fine there. I promise I won’t make a peep), I cannot. It has to be up to her. And in many cases, she’ll have to just deal.

That’s why my daughter did not tell her professors she has T1D when she went to school. She did make a visit to the health center (the director of the center was wonderful; she gave Lauren her cell phone number and told her to call if Lauren ever needed anything and she was no on duty. The health center is great too though; in two years Lauren has never had to use that cell). She also showed her roommate what a glucagon kit is, where it is and how it works and also said to her, “Look, if you are worried about me and are scared, just call 911. It’s better than doing nothing and I’ll be cool with it.” She told her sorority sisters and boyfriend about it, and since her group of friends always have one designated “non drinker” at each party, that person always knows if Lauren is in trouble, get help ASAP. So yeah, she set things up. But she has not asked for anything special.

While I’ve heard of parents helping kids set up special situations for their college kids (and my daughter has actually recently decided to register with the disabilities office at her college in case she has a diabetes related illness that keeps her out of things for a long time), we chose not to, at Lauren’s lead. So far, it has worked. With some kinks.

One morning last year she had a Spanish midterm and woke up throwing up from ketones and high blood sugar. She called me and I talked her through getting better, as the clock ticked towards the exam time. With 15 minutes to go to get there, she still felt miserable. She asked me for advice.

“I guess you can either email him now and tell him you are very sick and explain highs with diabetes, or you can drag yourself down there and take the test,” I said. “It’s up to you.” She thought about it for a while, and since she was no longer actually throwing up, decided to suck it up. She did okay on the test. Not a 100. But okay. More so, she saw that she could power through when she had to (admittedly, had she become sick 40 minutes later she probably would not have made it. But if a kid without T1D had a stomach bug, neither would they).

In another class, she had to write a final speech on some kind of mission or non-profit and get the class to “believe in it.” (Talk about teeing it up for a kid, eh?) Of course she spoke about life with T1D and the JDRF and all they do. She got an A, and a note from the professor that said something to the effect of, “Wow – never seen the entire class, including me, cry before. And I’m very impressed at how you just seemed like any other student in the class. You’ll go far.” In my head as she told me this, I whispered, “Despite diabetes.”

I cannot explain to you how hard the separation process has been for me as a mom. I want to be Lauren’s warrior mom and protector forever. I want to make it all okay. I want to catch her before she falls and fix every scrape and explain to everyone how brave and brilliant and determined she is in the face of great adversity.

But it’s her turn now to take the reigns. College is her practice for the “real world.”

And it’s my time to figure out my new place in her life: advisor, yes. Fixer? No. Warrior mom on Capitol Hill and anywhere you can find me fighting for better tools and a cure? Forever. That’s the one role I never have to back down on.

It’s a tricky life, this diabetes thing. And sometimes, the best thing we can do is not do. Man, it sure is hard.

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Riding On Insulin and the joy of setting kids with D free

A note to friends and family and readers in general who have been to ROI — I hope you add your thoughts to the comment section so more folks can learn all about ROI!

Okay this is going to sound so very selfish, but one of the first things I wailed at Lauren’s endocrinologist at the hospital was this:

“We’re never going to be able to go skiing again! I’m going to have to quit my job!”

I had worked for years as a crime reporter. But only months before Lauren’s diagnosis I has scored my dream job, the one I announced I’d one day have on fifth grade career day (to which the teacher said: “Moira. You need to set more realistic goals. I mean, a ski writer?” but I digress.) Yep, it was going to be my first winter of living the dream: traveling to ski resorts all over and the writing about them. My kids were little so I fully planned on taking them along.

And now, I felt like all was lost.

But our endo, the fabulous Dr. Dude, set me straight.

“Moira: You will go skiing. Lauren will go skiing. You will travel without her; you will travel with her. We are going to help you make it happen. Because to do anything less would be unfair to Lauren. Do you really want her growing up thinking she robbed you of your dreams? I don’t think so.”

All this came rushing back to me last weekend. You see, I spend the weekend hanging out at the Riding On Insulin Camp, brainchild of world-class snowboarder and wicked-cool person with Type 1 Diabetes Sean Busby (and his amazing wife Mollie). I’d read a lot and heard a lot about the camp and was excited to see how it all worked.

So, with Lauren (who was home for spring break) and two of her sorority sisters (who came home for spring  break with her), I headed out and took it in.

Saturday morning the ROI room at Wachusett Mountain was packed – full of excited kids and kind of nervous parents. Parents were talking back and forth: asking one another things like “Are you nervous with them going out without you?” and “Will you go to the parent learning session or follow your child around?”Image

Sean made it clear what he hoped they’d all do: Let the kids feel what it’s like to be on the snow, on the mountain, free from parent intervention, and perfectly safe.

You see, each child, whether on snowboard or skis, was assigned to a group at their ability level, and each group had a coach assigned to them. Most of the coaches were either medical professionals or folks with Type 1 themselves or with a child with Type 1. After the group blood check, each child would be in the hands of the coaches, not their parents.

For some of them, it would be their very first time being so very active without mom and dad along.

The kids headed out, with Sean moving from group to group. The parents, slowly realized they had to take the giant leap and let their kids go. They headed inside for an hour and a half q and a with my daughter and other young woman with diabetes, Lindsay Felix. Lindsay and Lauren were incredible. They spoke openly and honestly about all kinds of things, and gave advice the parents drank in. I kind of felt bad for the very few parents who did not come in and take that in. It was a great session.

Lunchtime came and all the kids came back in to dine together. Mom and Dad studied numbers, but I could see the kids were itching to get back out on the snow.

I know a big reason is riding and skiing are just plain fun. But I cannot help but think another reason is each run, these kids were learning an amazing lesson: Diabetes cannot stop you. In any way.Image

Sean gave a moving speech at dinnertime and shared how he manages to travel the world and ride crazy mountains, all with diabetes along. And I had to think those kids walked off with way more than a cool certificate signed by Sean and Mollie.

They walked off with confidence. They headed home with the knowledge that they can reach for mountaintops and go for high speed and live a crazy, interesting and amazing life, all with diabetes along.

I remember my first ski trip with Lauren. It was two months after he diagnosis and I decided to take her alone for a weekend trip I had to make so I could work out the kinks of skiing on insulin. I had called the ski school ahead of time. Since we’d always put her in ski school, I wanted her experience to be the same (and this was in the days of regular and nph and exact meal times).

I dropped her off at ski school, took a deep breath, and headed off to do my ski work all day (yes. It is cool that a chairlift is my office. But again I digress.)

Late in the day, having not been beckoned by the ski school, I headed to pick her up. A soft, fluffy snow was falling. My little daughter, so new to diabetes and life with it, ran out the door, flung her hands in the air and screamed, with glee:

“Kids with diabetes CAN have fun!!!”

And that’s the best lesson of all. I know in my heart every single kid who has attended Riding On Insulin will completely agree. Because when it comes down to it, Sean Busby is sending the same message Dr. Dude gave me back in the hospital so long ago: Don’t let your Mom or Dad fears hold your child back from going big in life.  I salute those parents for letting their children just go. It’s the bravest, most selfless thing a parent can do.Image

 

 

 

Post note: shortly after I posted this blog I got an email from Dr. Dude himself — at that exact moment he was on a chairlift in Utah — with a friend who is an adult with Type 1. What are the chances??? Here they are:

 

Dr. Dude and friend

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Guest Post: Once a kid, now a wife and mom. Why she needs an Alert Dog

Look at us, with a guest poster and all! Krista is a young woman I so admire. She’s forthright and honest, even admitting to times she has not been the perfect person with diabetes. She’s funny and caring. She reaches out and helps so many. When she explained to me why she had decided she needs a Diabetic Alert Dog, it just made sense. I’ve been reading and learing a lot about these amazing dogs, but I’ve had some questions. Krista’s story is one that just made me say “Absolutely!” Read on. I know — it’s longer than usual, but worth the time.

I’m Krista Middleton.  Wife to Nick, Mommy to Cooper (4) and Wyatt (1).  They are my loves.  I was an elementary school teacher before I had my sons, now I stay home with them and try and do the best I can at this “stay-at-home” Mommy thing.  I live in Wylie, Texas (a small little town just minutes from Dallas).  I love the color red, wearing warm pajamas, baking, getting letters in the mail, and going on vacations.  Oh, I’m also a type 1 diabetic…and have been for almost 27 years.

 

Krista and her beautiful family. A D.A.D. can help her know that her son's have four paws that will help her when she needs it.

When I was 21 months old my parents awoke in the middle of the night to what they describe as the sound of a hurt animal screaming in the woods.  To this day they cannot explain the sound they heard coming from my room without getting emotional.  I was the only one in the house other than them, so they knew it was me.   My parents brought me to the children’s hospital in Ottawa, Ontario, Canada where we lived.  Doctors did test after test but nothing came of them.  My Dad suggested I be tested for diabetes (remember, this is YEARS before the internet when trying to figure things out was next to impossible for parents).  The doctor assisting us told my parents that since nobody else in our families had diabetes that I did not in fact have diabetes.  More tests were run.  Two days later a doctor had come to the hospital from India and walked into my room.  She did not speak English and had a translator with her.  She took one look at me and told the translator “that little girl has diabetes.”  We don’t know much else about that doctor, other than the fact that she diagnosed me on the spot as a diabetic and our world was turned upside down.

My parents kept me on a very tight leash when I was young.  My Dad took charge of my medical needs, keeping my blood sugars next to perfect.  Mom and Dad became medical professionals overnight.  Back then diabetes was so very, very different.  Diabetics could not eat sugar.  No sweets for us.  No birthday cake with icing.  If we went to a birthday party, the icing had to be scraped off.  We could only eat vanilla ice cream because any other flavor would probably have too much sugar from the flavorings added.  We didn’t carb count.  Pumps were unheard of.  Sleepovers never happened.  One of my first sleepovers was in late high school.  I was at my best friends house and was so excited because my parents were finally letting me spend the night away from home.  Guess what happened?  Phone call in the middle of the night to my parents saying “Krista is convulsing, what do we do?”  Luckily my Dad had drove me over to my friends house 2 days before and knew where to go in the middle of the night.  I don’t remember many sleepovers after that one.

After graduating from high school I applied to Oklahoma State University and was accepted.  I was beyond excited!  My parents were too.  I know now that they were terrified to let me leave the house and move an hour and a half away, but they never said they didn’t want me to go.  I went off to college, but came home every weekend for the first two years.  I got into some trouble with drinking while there.  Nothing crazy, just lazy with my needles and checking my blood sugars.  I hear most of us go through it, but I look back and regret it.   I’m really lucky I woke up one day and decided I had had enough of the craziness and finally started taking care of myself.  I also got pregnant with my first son right around the same time.

My mom had gotten really sick and my husband and I didn’t want her to die without a grandchild.  My A1c’s had been high for years and in my mind I really didn’t care.  I truly lived my life pretending I didn’t have diabetes.  I have never been one to openly talk about life with it, until recently.

My diabetes went from bad to good overnight.  I found an endo who understood that pregnancy and diabetes is hard, and perfect numbers all the time are impossible.  I was very fortunate to have incredible doctors who praised my hard work.  Cooper was born 5 weeks early via emergency c-section.  He was 8 pounds 8 ounces.  I knew we had big babies, but wow!  It wasn’t long after I had Cooper that my blood sugar levels started to become unpredictable.

Nick called the house from work one day and told me “Krista, go check your sugars, you’re low.” I fought him, like I always do when I’m low. “No, I’m okay.”  I don’t remember ANY of this. When I am really, really low like this I don’t know what’s happening, I am like a zombie who is extremely out of it. I am writing this from what Nick has told me, not what I remember. He said he instantly left work to come home because he knew things weren’t right. Work was 25 minutes from our house. When he got home I was unconscious, convulsing on the floor in the hallway of our house. Cooper, who was 2 at the time, was hitting me with a kitchen whisk trying to wake me up. I woke up to paramedics putting me into the ambulance asking me “Do you know your name? What day is it? How old are you? When’s your birthday?” I don’t remember anything before that. My arm is now attached to a large IV with a fluid that is “liquid sugar” being pumped into my vein. I’m coming back to reality, but then the nausea takes over and I’m sick. The IV fluids made me vomit, which lowers my blood sugars again forcing me to try and eat and drink constantly until they get back to a safe level without going too low and putting me unconscious again.

Then there was the time I was 10 weeks pregnant with my second son. My older son, who was 2, and I were grocery shopping at Walmart. I felt myself going low (if I do notice myself going low, I get extremely tired, start to convulse/shake, can’t think straight, can’t focus, start to lose my hearing, etc) so I got glucose tabs out of my purse and ate a handful of them.  I was eating them and nothing was happening. I was so disoriented that my brain wasn’t telling me to just open a juice from the grocery store and then pay for it later. There had been a young guy shopping up and down each aisle behind me. I KNEW he had seen me pushing a baby in my shopping cart. I was so weak from my blood sugars being so low that I had to LEAVE my 2 year old son in the meat aisle to stumble to the man. I finally got to him and said “I need help.” I was later told that I collapsed into his arms. I woke up sitting in a chair, surrounded by paramedics, beside Cooper still in the shopping cart. I forgot I was pregnant. I had IV’s in my arms. We were surrounded by Walmart executives (who happened to be doing a walk through at the store that day) and other employees. One employee was standing beside Cooper making sure he didn’t get out or leave my side. Another employee had been sent for juice for me. A third was standing beside me in charge of the chair I was sitting on. The man I had collapsed onto called my husband and told him “your wife has collapsed at Walmart.” Nick drove to the store and parked his truck at the front entrance, beside the firetruck and ambulances who still had their lights flashing.  Just a typical Friday morning in the life of a diabetic.

Two days later was Superbowl Sunday. We had been invited to a friends Superbowl party. We had spent the previous night at my parent’s house because they were going to baby-sit Cooper while we went to the party. I was getting ready when pregnancy exhaustion (or so I thought) came over me. My parents had no idea we were pregnant because we wanted to wait until my second trimester to surprise everyone. I woke up to find myself being overpowered by paramedics who were trying to get the glucose IV started. When I’m unconscious because of these lows I fight. My body doesn’t understand what is happening. Imagine being completely asleep and suddenly having people on top of you holding you down. You don’t know what is happening. I remember saying to my mom as the paramedics were leaving “Well, that’s one way of finding out.” My mom wasn’t sure what I was talking about, so I said “you know, finding out I’m pregnant.” The paramedics had been able to keep my pregnancy a secret from my parents while treating me…I unfortunately didn’t know that because I don’t hear anything when I’m unconscious. I blew the surprise. 😦

Nick came home from work last March to find me convulsing on our bed.  I had taken an afternoon nap while the kids were sleeping and had passed out during my nap.  Cooper was running around the house and Wyatt was screaming from his crib.  Nick couldn’t wake me up on his own so he had to call 911.  I remember waking up to the voice of a paramedic saying “she’s only 12, how is she still alive?”  I have never heard of a blood glucose level that low, and apparently they hadn’t either.  My arm had been flushed with a liquid glucose from the paramedics when that reading was taken so who knows how low I had actually been.  I didn’t have to go to the emergency room that day because I started to do better within minutes of the IV.  The rest of the evening was spend being cold and sore and extremely fatigued.  These are all typical symptoms after a low blood sugar.  My hand was so sore where the IV had been too.  I thought I was just being a baby about it.  The next morning my hand was red and swollen.  By the afternoon I could no longer open and close it.  It was now purple.  We ended up going to the urgent care where the doctor on duty said “I can’t help you, you need to go to the emergency room right now.”  So off to the ER we went.  I ended up being diagnosed with cellulitis.  Doctors said that when the paramedic put the IV into my vein and “flushed” it, that it was in the right place.  The problem was while I was convulsing the needle must have dislodged causing all the IV glucose to go into my skin, rather than in the vein like it is supposed to.  It has been 11 months since then and I still wake up with a swollen hand 4-5 days per week.

Cooper is always asking me when I check my blood sugar if I’m low.  We have practiced over and over how to call 911 and what to say.  My brother was 3 the first time he called 911.  My Mom didn’t even know he called because she was so busy trying to get me back to consciousness.  Cooper is now 4 and I know one of these days he will need to call and that terrifies me.  I  don’t want my kids seeing me like this.  My biggest fear is having one of my kids find me dead.  Its hard to say that, but even harder to write.  Looking at those words is more than any mother should have to think about.  I am supposed to protect them, not terrify them.  When an ambulance or fire truck goes by with its lights or siren on Cooper always says “are they coming for you.”  I don’t want my sons to fear the people who are out there to help us and protect us.  I need help.

We recently decided as a family that we had to do something for all of these lows.  We thought about a CGM but they are often “off” and I didn’t want to risk that.  I needed something that would help me detect the highs, but more importantly the lows.  I needed help.  I heard about Diabetic Alert Dogs.  They sounded strange but I was interested in learning about them.  I didn’t want one though, I just wanted to hear about what they were and what they could do.  I began talking to a local mom who has a “D.A.D” for her two kids (both of whom are Type 1’s).  She didn’t tell me all the details I was interested in though.  I decided to pick up the phone and call the company she got her dog through to find out more.  Forty five minutes after hanging up the phone with Warren Retrievers I was hooked.  I spoke to my husband and he was just as interested as I was.  I learned that these dogs are trained over a 2 year period to warn their owners about highs and lows.  The dogs can get anything I need when a high or low hits.  If I need my glucometer, the dog can get it.  My medicine bag, they can bring it to me.  If I need a juice, the dogs are trained to fetch me a juice.  Warren Retrievers/Guardian Angel Service Dogs are the ONLY Diabetic Alert Dog company endorsed by JDRF.  I was blown away.  I have spent so many years of my life loving JDRF and everything they stand for, and then I find a D.A.D who is endorsed by them?  I was still going back and forth though.  I think I was still thinking of getting a “pet” dog, and that isn’t what I wanted.  I wanted diabetes help.  Then I heard what I had been needing to hear.  Dan Warren, President and CEO of Warren Retrievers said “by the end of the dogs two year training, the dogs are trained to call 911 if nobody else is in the house to help you.”  I had to have one.  Within three weeks of that phone call we had placed our deposit for my D.A.D.

I am excited and nervous.  I was caught off guard by the price of these dogs (my dog will cost $19,500.00).  Gasp, I know.  I was surprised with how unshocked most people have been when I tell them the price.  “Krista, that is the cost of 2-3 emergency room visits a year.  We pay that anyways,” was my husband’s response.  My parents both said “to know that you will wake up every morning, twenty thousand is nothing.”  My parents have often said they never slept well until they saw how good my husband was with my diabetes.  I know my husband cringes when business trips come up that he has to go on because he has told me how he lays in bed wondering “is she okay?”  I remember when he was out of town a few years ago and I didn’t answer the phone the next morning.  I was busy doing typical daily things.  The only thing my husband said he could think of is “she’s low and I can’t get to her.”  I will soon be able to put an end to my fears, and my families fears.  I am really lucky to be surrounded by amazing people who are wanting to help me.  I am thankful for so many great readers like all of you who took the time to listen to my story.  I have been working on fundraisers to help cover the cost of my D.A.D.  If you would like to help me, please visit the Guardian Angel Service Dog’s website.  At the bottom of the website is a link that says “Donate Now.”  Once you donate your money, Dan Warren will write you an email back asking who you would like to donate too.  Krista Middleton, me, would be forever grateful for any donation you are able to help with.  Please make donations on the following website:  http://guardianangelservicedogs.org/

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