advocacy / dare you to move / guest posts / health + fitness

living vertical: steve’s story

• by Awesome Guest Blogger

In 2012, Steve Richert and his wife Stefanie will embark on the adventure of a lifetime–three hundred and sixty five days of climbing with a goal of changing people’s perceptions of physical activity and being active with diabetes.  Diagnosed with type one when he was sixteen, I’m blessed to have Steve here today sharing his story of owning his diabetes through changing his perceptions, what he’s doing through climbing to educate and advocate for physical activity as an integral part of diabetes management, and what he’s going to be up to in 2012.

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When I woke up in a hospital bed 13 years ago and was told “You have Type 1 diabetes” I had no way of knowing how much it would change my life. Today, this condition I live with has shaped who I am and has caused me to reach greater heights (literally!) than I may have otherwise.

My first reaction to my diagnosis was that I determined to find a way to beat it. I couldn’t stand the idea of being dependent on medicine or hospitals. I wanted to be free—and the fact that the doctors all told me that there was no cure, made me decide that I had to simply find a loophole.

To start with, I decided that I would prioritize my health above everything else. As a 16 year old, that meant explaining my strict diet to other kids in the lunch room and checking my blood sugar before (and during) soccer games, always carrying food in case my sugar dropped low and not getting to treat eating as a recreational activity. Diabetes forces you to redefine your relationship with food—or lose your eyesight, your limbs, your kidneys and circulatory system—so there is a lot at stake!

Fitness became a big part of my life because the insulin injections that I took would work more effectively when I was active—playing sports and working out basically became medicine for me—both to help my body use the insulin I took and also as a means to combat stress. As I grew older and made it through college, the mental aspect of diabetes began to impact me—or at least to the point that I suddenly became aware of it.

Having a chronic illness carries with it some sort of routine that you must adhere to in order to stay well—and while this monotony can allow you a measure of success in dealing with the disease, it causes you to become tired mentally. Depressed. Bored. Hopeless.

I was staying healthy by just eating well and going to the gym, but I knew that I needed to escape the routine if I was going to progress—and that is when I found climbing. I had tried climbing when I was in high school as part of a Phys Ed unit. It initially appealed to me but I didn’t really know how to get into it. So I let it be. Once I revisited the sport after college, it became both a physical activity and mental stimulant. Climbing became my means to explore the world outside my comfort zone: my gateway to the unknown.

I followed the path that my passion led me down and I began learning how to teach others to climb and in 2009 I began working as a climbing guide. I get great enjoyment from being able to teach people to climb and showing them that they CAN do it. Taking something that seems impossible and making it possible is the magic of climbing. Some of the richest experiences I have had climbing have come from situations that held an unknown—that became a success only after the fact.

When I tell people what I do to stay healthy, they frequently smile and shake their head: “That’s fine for you, but I can’t do enough pull ups” or “I am terrified of heights—I could never do that”. Those are the people that I MOST want to take climbing, because turning that can’t into just did is a life-changing experience—and I want others to experience the power of the natural world like I have—through challenging themselves!

Recently, this exact initiative has been my focus. I decided that since I can’t bring people to the mountains, I can bring the mountains to the people—through film. Starting on January 1st 2012, my wife Stefanie and I will begin 365 days of climbing across North America, which we will be filming to make an in depth adventure documentary that will bring you into the high and wild places that we will be climbing! We are selling all of our possessions that won’t fit into our little red hatchback and setting off on a grand adventure. We want everyone to follow along. We will be blogging at www.livingvertical.org where you can keep up with our adventures and support our film if you would like to be part of what we are doing.

My goal at 16 was to overcome diabetes. 13 years later, I still have to take insulin injections 5-10 times daily. I still have to stick my finger 4-6 times a day. There still is no cure. But diabetes has forced me to problem solve, forced me to raise the bar and step up and out of my comfort zone and given me life experience that a pharmaceutical cure would have stolen from me! I consider myself blessed to have the opportunity to take on this challenge and I look forward to sharing my successes, struggles, failures and mountain-top experiences with you all during 2012!

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Steve is the founder of Living Vertical as well as a climbing instructor.  In 2012, he and his wife Stefanie will be picking up their lives and heading out on the road to spend the year climbing and spreading the message that yes, you CAN do this!  LivingVertical is a non-profit organization that uses climbing and organic nutrition to empower and improve the lives of people living with type 1 diabetes.  To help Steve and Stefaine reach their goal, please consider donating to their project here (all kinds of cool incentives, too!), or contributing through donations of supplies they may need along the way, specifically climbing equipment, snacks and OneTouch blood glucose test strips–gotta keep our friends safe and healthy on the road!

As Steve’s mantra says . . . “Why wait for the ‘cure’?”  What are YOU doing to stay active and healthy with chronic disease and own it — not tomorrow, not next week, but today? Want to share your story?  E-mail me and join the journey.
badassmatics / dare you to move / guest posts / health + fitness

mental health and exercise: natasha’s story

• by Awesome Guest Blogger

Over the last year or so as I’ve been switching a lot of gears in my own life, the amazingness that is the internet has facilitated the growth of a friendship between two people halfway around the world from one another who have, in my opinion, far too many parallels between themselves for it to be a coincidence (that said, I don’t believe in coincidence).

I’m blessed to have my friend Natasha sharing her story here about the effects exercise has on not only her body, but also her mental health (and that whole body image monkey that comes with the intermingling of the two).  Natasha lives in the Netherlands, grew up in the UK, and is a Canadian citizen [yay for Canada!], which makes for a lot of interesting discussion!  She’s also in the fairly recent past completed two triathlons and her first half marathon–no small feat for anybody, but when you add not only asthma but also a host of mental health problems, you’ve got one amazing woman!

It takes a lot of guts to open up about mental health issues in a forum such as this, but it’s something that needs to be talked about, so I’m really excited to be able to share Natasha’s story.

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natasha

I think it’s fair to say that I have a long standing love/hate relationship with exercise.  I’ve had the image of myself as exercise-hating, non-athletic and unfit as long as I can remember, and yet if I think back to my childhood, I don’t think this was always so.  It’s a fair point that I never fared well in team sports – a lack of co-ordination, coupled with being prohibited from wearing glasses in school PE lessons didn’t make me a very useful person to have on a team.  And then, of course, there was the fact that I was sick on a fairly regular basis.  I was only diagnosed with asthma in my early teens, but the signs were there from a younger age.

On the other hand, though, I used to love going on cycling ‘expeditions’ to the local woods, or to the park.  I enjoyed gymnastics, skating, skipping, playing elastics… I think I wasn’t the inactive child I picture myself as.

Kerri’s already had a couple guest posts by other asthmatics, and I’m not sure that I have so much to add, so I want to take this post in a slightly different direction and rather than focus on the topic of physical health and exercise, to direct my attention to the area of mental health.  In reality there’s a fine line between the two things, and for me, at least, the two are very intertwined.  As a teenager and through much of my twenties I suffered from depression, and both then and now I’m more prone than the average person to anxiety.

Cause and effect are a murky line, I’ve been recently diagnosed with ADHD, with which both depression and anxiety are often linked – either through biochemistry, or simply the result of trying to fit into a round hole as a square peg.  I also suffer from a condition called Poly Cystic Ovarian Syndrome (PCOS).  PCOS causes hormonal imbalance, which leads to weight gain and hirsutism amongst the more visible symptoms.  Needless to say, neither the body image issues which result, nor the wonky hormone levels do much to help your mental and emotional health.

Between issues of self-image, and the breathlessness which came with the asthma, then, exercise quickly because something I hated as a teenager, in a world where school PE class involved tiny gym skirts, which suited only the sylph like.

And yet, here is the biggest irony of them all.  The PCOS, the ADHD, the depression, even the asthma, exercise would seem to be that magic pill that has the power to help all of these conditions.  The one thing you can do for yourself, without cost, without resulting to pharmaceuticals.

But…

The weight gain caused by the PCOS keeps you out of the gym because you’re ashamed of your body.  The ADHD distracts you when you intend to go out for a run.  The depression… well, really, when you’re curled up on the sofa in a ball of misery, does stepping outside for a walk even cross your mind?  If it does, it only serves to remind yourself how worthless you are, because it’s a beautiful day outside, and you just can’t face it… yet you hate yourself for wasting it.  And then, the icing on the cake, the anxiety, the fear that you’ll have an asthma attack you can’t bring under control.

When I read back over that last paragraph, I have to say that it doesn’t sound very hopeful.  And yet, last year I took part in a 160km (100miles) walk in four days.  After a year sidelined from running whilst I worked to bring my asthma back under control, this year I ran my first half marathon, and took part in two triathlons.

Yes, I am still overweight, although I have it under better control than in my teens.  I can’t say that I’m happy with my weight, but I’ve learned to live with it, and I haven’t stopped striving to lose those final pounds.  I’m learning to take baby steps, set myself concrete goals, and figure out how to work with the ADHD, rather than waste my energy fighting against it, and myself.  The anxiety remains, but I refuse to let it defeat me, and with every small success, I come closer to defeating it.  My asthma is better managed, and I’m beginning not only to run despite asthma, but to learn to push myself beyond what I believed were my limits.

And yes, it is true, the further I push myself out of my comfort zone, be it facing an Open Water Swim in a triathlon, or sparring in a kickboxing class, the more I feel the benefit, both physically and mentally.  I may not be losing weight, but I’m toning up.  I may still get more out of breath on the stairs than my colleagues, but I know that’s the asthma talking and not my fitness level.

And most importantly?   At the end of a workout, I feel like I’m on top of the world.

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Thanks for sharing your story, Natasha!  (Gym SKIRTS? You poor thing!)

Natasha lives with her crazy cats, enjoys reading pretty much anything she can get her hands on (she keeps saying she needs more bookshelves!), and is a software architect with a passion for photography and travel.  Natasha blogs at Heron Underwater, sharing her stories of athletic endeavours, her health and life in general.

asthma / badassmatics / guest posts / health + fitness

becoming an athlete with asthma: elisheva’s story

• by Awesome Guest Blogger

Several years ago I connected with Elisheva over our common bond of our occasionally spazzy lungs.  Since then, she’s become among my closest online friends, and we’ve shared in both frustration and celebration with one another. She is currently training for the Tel Aviv Marathon 10K and I’m excited to have here sharing her story about being diagnosed with asthma in middle school, growing from that point forward, and her current fitness goal participating in her first race.

I’d also like to add, that while Elisheva downplays her story with the “mild asthmatic” clause in her second paragraph, I’m thankful she’s sharing it because it’s a story that a lot of people with asthma can identify with, as somewhere from 50-75% of people with asthma fall into the “intermittent or mild” categories (Lieberman, AAAI), like Elisheva does.

Take it away, Elisheva!

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This is in response to the challenge Kerri posted in her post “exercise and chronic disease : sharing my asthma story“.  First off, I don’t like the term “chronic disease”.  The word “disease” makes me think of creepy crawly infectious diseases that are going to kill you.  And second I don’t like associating that term with myself.  I’m a healthy person.  I really am.  I’m lucky.  I spend the vast majority of my time not thinking about my health or feeling sick at all.  Hence the word “disease” is out since I don’t have any creepy crawlies.  And the word “chronic” is out since I spend most of my time feeling healthy.

Tho.. what’s the exact definition of “chronic”?  Can it also mean something that keeps coming back?  If so… okay fine.  I guess chronic is back in.  Then again, I spent about half an hour today hunched over doing body shaking coughs and taking a couple more puffs on an inhaler as a result of running in the cold this evening.  But hey, that’s normal, isn’t it?  That doesn’t bother me that much.  Tho this was my first (quite pathetic) run in two weeks, after an unscheduled hiatus due in part to my apparent inability to breathe like a human in winter weather, not that running in pouring rain and hail is all that great of any idea anyway.  Kerri expressed interest in me doing a post, and I don’t want to let my buddy down.  Tho I do feel a bit unoriginal writing about the same condition as has already been posted about.  Plus overall, I’m a pretty mild asthmatic, tho certain things – exercise included – will always be challenging for me.

Asthma is nothing new to me – I’ve been dealing with it since I was in fifth grade, back in 1996.  Pretty awkward age to get diagnosed with anything, but hey, everything’s awkward when you’re a tween.  And a teen.  Happy I never have to do those years again.  And at that point I was already pretty familiar with it since my little brother, who was six years younger than me, was asthmatic since birth and was a regular in the ER and did inhalers and nebulizer treatments at home.  That ended up being beneficial to me since (a) my parents were already pros and (b) I had his nebulizer available, which I attribute to my never having been in the ER myself.  Looking back at my middle school and high school years, I don’t remember asthma being a particularly huge deal.  I only have a few distinct memories of it really affecting my life throughout those years.  Carrying around asthma equipment in your school backpack is hugely awkward.  Actually using it is 100 times more awkward.  There were many instances where I had friends pleading with me to use my inhaler already when my breathing was clearly out of control but I insisted I was fine.  I think I even got kicked out of class once because my coughing was so loud and distracting.  In getting ready for gym I used to wait for all of the other girls to finish changing and leave the bathroom before I took my inhaler.  I think I did the same thing while I was on the volleyball team in high school.  Seventh grade gym class was interesting.  For probably the first and only time in history, the asthmatic kid was the teacher’s pet.  The teacher told me that her four year old daughter had just been diagnosed with asthma and she was going through the process of learning to properly cope with it and manage it.  She was extra nice to me and asked me questions now and then about asthma.  There was one time that year when I sat out on gym class because of asthma (I think I was getting over a cold then).  There was another girl who was also sitting out and she asked me what was wrong with me that I wasn’t participating.  I said “asthma”.  And she replied “Oh. I have asthma too. That’s not a reason to sit out of gym class.”  I don’t remember if I asked her why she happened to be sitting out that class.  Thinking… thinking… Oh, there was that time in volleyball when I guess I lost my inhaler and didn’t notice and suddenly one of the teachers was up in front of everyone waving my Ventolin asking whose it was.  I realized I was missing mine and had to go up and claim it, which I found to be highly embarrassing.  And… that’s it, I think, for schooltime asthma exercise memories.  School was a long time ago, man.

So anyway, fast forward to the present.  In an attempt to get in shape I swim once a week (which I’ve been doing for the past two years or so), do Zumba once a week (since January) and now I got it into my head to take up running (about two months ago).  In theory I’d like to be running twice a week.  I’m planning on running 10K in the Tel Aviv Marathon in March for a group of asthma awareness people.  I used to be good about running twice a week, but then the weather changed and whatnot and yeah.  In addition, I live four flights up with no elevator and don’t have a car.  So I spend a lot of time walking and going up and down stairs.

I’m not going to lie.  Exercising with asthma is hard.  And it’s frustrating.  The frustration is probably the worst part.  You take your inhalers like you’re supposed to.  Before exercise.  Sometimes during exercise.  Often after.  Sometimes you’re totally fine (I’d say about 50% of the time I’m totally fine).  Sometimes you cough your way through the exercise session.  Sometimes you’re fine during the exercise and fine right after and then an hour later you’re doubled up emitting these body shaking coughs.  And it all seems worth it (Okay it seems worth it to me.  Not to most of my real life asthmatic friends.  I guess they’re not masochists.) because you’re always improving.  Your speed is better.  Your endurance is better.  Your breathing often is better.  You get minor frustrations here and there about why you STILL get so out of breath in the pool after two years of regular swimming and changing up your meds, when you take them, etc.  But whatever.  Swimming makes you happy (okay, I don’t know about you.  I love swimming.  Even when it’s hard.)  You start believing in yourself and looking up asthmatic athlete forums online and reading articles and interviews with famous asthmatic athletes (How cute is this?) and then you get your period or a cold or the weather changes and suddenly you can’t even sit quietly on your couch in your house without the body shaking coughing and the breathlessness.  You take what seems like a billion inhaler breaks throughout the day and wonder how the hell you’ll be able to run in that damn Tel Aviv Marathon if you can’t even take a deep breath or laugh or yawn without setting off uncontrollable coughing.  I honestly don’t know how people with constant asthma symptoms deal with it.  My main coping mechanism is telling myself that it’ll be over soon.  Of course it will be back later, in weeks or months if I’m lucky.  But this specific episode will always be over soon.  Cuz things end.  Periods, colds, rain… it all ends.  And then I’ll be fine.  Back to my regularly scheduled breathing well, taking exercise and other things into account.  But those things don’t generally last long.  Or are particularly disabling.

The biggest frustration is the time lost.  Like now.  Missing two weeks of running doesn’t just keep your training from moving forward.  It actually moves you backwards.  You end up losing some of what you’ve gained and have to start all over again.  And I’m actually worried that something will happen and I won’t be able to run the 10K.  How do I know I’ll be okay specifically on that day?  Worst case scenario I can walk it.  The chances that I wouldn’t be able to even walk it are pretty slim.  But I really do want to run it.  Like really really.

I think for me at least, asthma serves as a driving force for getting in shape.  Some of my friends have pointed that out to me.  I tend to use it sometimes as a guilt card to get people to come to Zumba or to swimming with me.  Or to train for the marathon.  I say something along the lines of “I have an incurable lung disease (make it sound as pitiful as possible, eh?) and I do _______.  I have to take drugs in order to breathe well enough to do ____________ and I cough while I do it and I still do _______.”  Unfortunately for me, such tactic doesn’t work as well as I’d like it to.  A lot of times they’ll just say I’m nuts or if they’re smart, they’ll tell me that I exercise because I’m asthmatic.  Because I want to prove to myself – and others – that I can.  The first time I heard someone tell me that I was impressed.  I think there’s a lot of truth in that.

I hope this gives you some insight into what it’s like to be an asthmatic athlete (even tho there have been a couple before me already).  I’d really like to read what it’s like to exercise with other conditions and what kinds of things you have to take into account and what your feelings about the whole thing are.  Kerri – I know you have friends with diabetes who read this.  And people with other stuff too.  Also, Kerri thanks for coming up with the topic.  Challenge accepted.

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Thanks for sharing, Elisheva, and best of luck with your race!  I can’t wait to hear about the rest of your training and read the race report.

Elisheva lives in Jerusalem and blogs at Ramblings of an Occasionally Oxygen Deprived Mind about whatever strikes her–whether it’s asthma and exercise or the situation in the Middle East, posting recipes to her favourite dishes, or general updates about what she’s up to.  She loves coffee, beef and chocolate, is currently on a muffin baking kick (sometimes making me want to get on a plane to Israel to share!) and exploring her community.  She’s also mom to a hamster named Boten [which translates to “peanut”–awwww].

advocacy / guest posts / health + fitness

guest vlog! | cupcakes, memes and type 1.5 diabetes

• by Awesome Guest Blogger

Invisible Illness Week officially ended yesterday, but having an invisible illness doesn’t end until a cure is found.  Today, I have one more perspective on living with an invisible condition to share.

Cherise is an amazing diabetes advocate and lives with Type 1.5 diabetes, also known as LADA [Latent Auto-Immune Diabetes in Adult].  Cherise helps connect the Diabetes Online Community in a major way through the #dsma Twitter chat on Wednesday nights and is an awesome diabetes advocate.

Cherise has taken a new spin on the 30 Things About My Invisible Illness meme created for Invisible Illness Week, and chose to make her guest post in the form of a vlog.  I had a giant smile on my face while watching [also, I totally love the subtitles, so watch for those!]

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Thanks for sharing, Cherise!  I will be happy-dancing with the D-OC when diabetes is cured.  And y’all are gonna eat a gazillion cupcakes and not have to bolus or even THINK about carbs.

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Cherise was diagnosed with diabetes when she was 23 and is the founder and moderator of #dsma — Diabetes Social Media Advocacy twitter chat.  Cherise blogs at Diabetic Iz Me, and can be found on Twitter.

advocacy / guest posts

an interview with another kerri! | living with type one diabetes (and many cats!)

• by Awesome Guest Blogger

Today is the last day of Invisible Illness week!  I had the pleasure of being able to interview Kerri from Six Until Me (see also: creator of the #KerriPower hashtag we use when doing awesome things together!) about life with diabetes and being an amazing advocate for people with diabetes.  Kerri is also the reason that I have so many awesome friends in the Diabetes Online Community [yay #KerriPower!]

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Me: Hi Kerri! I’m so stoked to have you here sharing your perspective! YAY FOR KERRI POWER! Tell us a bit about yourself!

Kerri: Hi back to you, Kerri!  (Nice name you have there.)  I’m really honored to be hanging out on your blog today.  I usually blog over at my diabetes blog, www.SixUntilMe.com, where I write about life with type 1 diabetes, my goofy little daughter, my husband, and those three cats that somehow ended up living in my house.  It’s a potluck of chaos.

You’re a pretty elite and FAMOUS diabetes blogger :] — how did you get started in the blogging world?
Awww, you are way too nice!  I started blogging back in May of 2005 at the prompting of my then-boyfriend/now-husband.  I had been talking to him about Clara Barton Camp (a summer camp just for girls with type 1 diabetes) and explaining how I missed that feeling of knowing other people who had diabetes, too. He told me about this mysterious “blaaaahging” thing, and I decided to give it a go.  I posted my first post on May 4, 2005 and I found other diabetes bloggers almost immediately.  And then other people with diabetes found me.  From there, it got kind of crazy, because now there are hundreds of people who are blogging about their diabetes or the diabetes of someone they love, and suddenly I’m not at a loss for people who also don’t make their own insulin.  It’s nice, having a community that really gets it.  I’m honored to be part of this.

What kind of impact has the Diabetes Online Community [DOC] had on your own perspective on living with and managing your diabetes?
The DOC has confirmed for me that I’m not alone.  Managing diabetes is one thing, but feeling like you’re the only person on the planet who has to do it is really isolating and depressing.  Finding this community has made me feel more confident that there is a good life to be had, even after a diabetes diagnosis.  There are so many people with diabetes who are doing incredible things – and incredibly normal things – that I feel inspired and empowered by this community every, single day.

It’s evident that advocacy for people with diabetes is important to you. What’s your favourite advocacy moment story? [I know it could be a tough one!]
Growing up, I didn’t have a lot of mainstream media examples of people with diabetes.  The only one I knew of was Julia Roberts’ character in Steele Magnolias, where she’s a woman with diabetes who decides, against the advice of her medical team, to have a child.  Long story short, her character has a baby and then dies soon-thereafter from diabetes complications.  This was my mental image of a woman with diabetes who wanted to have a baby.  Now, after several years of planning, more hard work than I could imagine, and one very closely-monitored pregnancy, I have a healthy and happy 17 month old daughter. Blogging about my pregnancy is one of my proudest moments because I hoped to be an example of hard work equalling a healthy outcome.

What kind of advocacy projects are you currently involved with?
I write daily on SixUntilMe, and I try to keep it raw and honest because I want to share what life is really like with type 1 diabetes.  I also speak regularly at diabetes and healthcare conferences, and I’m currently hard at work on a big project that will be announced next year … so stay tuned!  🙂

You’ve had diabetes for a long time, but has having diabetes brought you anywhere that you’d never have imagined?
These advocacy opportunities have me speaking about diabetes to the CEOs of companies, and to government officials in Washington.  I’ve traveled the country on a platform of humor and honest advocacy, honored to be speaking at different health-related events.  And in December, I’ll be headed to Dubai, UAE for the World Diabetes Congress, which is the farthest I’ll have ever been from home.  I never imagined that advocating for diabetes would bring me such opportunity.

How do you encourage other PWDs to get involved with the DOC?
I tell people that we’re here, all the time.  Any time of day, you can log onto the computer and find another person with diabetes hanging out on a blog, or on Twitter, or on Facebook.  Diabetes never sleeps, but thankfully, neither do PWDs and their caregivers.  😉  Just add your voice to the chorus; the bigger our community becomes, the more our health benefits.

If you could tell a person without diabetes just ONE thing about living with diabetes, what would it be?
There IS life after diagnosis.  You’ll be okay.
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Thanks, Kerri, for sharing your thoughts here today!  [We need to have an epic meet-up full of iced coffee and cupcakes and Kerri Power!]

Kerri Morrone Sparling lives with her husband, Chris, and her ridiculously adorable pink-tutu wearing seventeen-month-old daughter.  Kerri was diagnosed with type one diabetes at the age of six and is an influential member of the diabetes community, both online and off.  Kerri blogs at Six Until Me.