A family living well with type 1 diabetes.

Posts tagged ‘inspiration’

Steve Needs YOU!

Over six months ago I wrote about Steve Richert. If you missed that post you can be brought up to speed here

From what I’ve learned about Steve in the almost year that I’ve “known” him without actually meeting him in person, is that he is passionate about a few things: his wife, his health, climbing things of a rocky, steep nature and inspiring others to live life to the fullest in spite of diabetes, or any obstacle that one must overcome.

He is driven, level-headed, focused and disciplined.

Anyone who has kept their finger on the pulse of Living Vertical’s Project 365 will tell you it hasn’t been easy for Steve and his wife these past seven months. They have had numerous set backs and life has gone on delivering its usual grab bag of the unexpected in spite of the year long project of climbing every day that Steve has committed to, all the while managing his type 1 diabetes. But Steve has stayed strong throughout.

Along with the set backs have come some pretty amazing opportunities as well. Recently Steve has teamed up with Roche, the maker of Accu-Chek® Nano,  to help fund this project.

This is where YOU can play a part in helping Steve achieve his goal. For every “like” this video receives, Steve’s initiative gets one much needed dollar. Please view the short video where you will meet Steve and see what he is really trying to achieve, “like” the video, then please share the video with your Facebook friends and on Twitter. Every “like” the video gets helps out.

Thank you.

Stephen Richert: A Man Living Vertical.

A few months back I “met” Steve Richert on Twitter. He commented on a link I posted–completely non-D related–and we got chatting. He introduced himself and told me about what he was planning to embark upon come the new year. I was instantly intrigued and impressed.

Steve is an avid rock climber who has started an initiative called Project 365. He plans to climb for 365 straight days in some of the most extreme environments our continent has to offer. With the help of his wife, Stefanie, he will document the journey.

Oh! And he also happens to have type 1 diabetes.

People like Steve fascinate and inspire me and I knew I had to keep in touch with him and watch his progress while he attempted to achieve his goal. As much as I want to believe in a cure for Jenna, the reality is that she may very well have to live with this disease for the rest of her life. I certainly don’t want her to sacrifice a single dream or ambition using diabetes as an excuse. Fortunately, there is no shortage of inspiring people in the diabetes online community and Steve is a shining example of just such inspiration. He is living proof that a person can do anything, be anything and live a rich and fulfilling life with type 1 diabetes. His determination and courage give me hope.

In mid January Steve and Stef began their 365 day mission. In between climbs Steve found time to answer a few questions I had for him and I am thrilled to share his words with you here:

* * * * *

Sherry: How long have you had diabetes? Would you mind sharing your diagnosis story?

Steve: 13 years as of January 16 2012. I was away from home, living in alaska at age 16. I came down with what felt like the flu and it just kept getting worse instead of better. Blurry vision, thirst, headaches, loss of coordination and I was constantly fatigued. After about a month of this I wound up having seizures and being hospitalized with encephalitis–which resulted in a concurrent diagnosis of type 1 diabetes. There were two days that I completely don’t remember and I just woke up in the ICU. I had been under an incredible amount of stress and it was all pretty disorienting–but once I got out of the hospital, it felt so good to not feel like complete shit, that I welcomed the application of insulin and the whole learning process that went with it.

Sherry: What prompted you to decide to embark upon this incredibly ambitious mission of 365 straight days of climbing in some of the most extreme terrain North America has to offer while managing your type 1 diabetes and what do you aspire to accomplish?

Steve: I want to empower people with type 1 diabetes and other chronic illnesses to think big. To not let a medical condition constrain their dreams–also I want to demonstrate the benefit of being active and eating a fresh, high quality, plant based diet and connecting with nature. Doing more with less (drugs/meds, “stuff”) is both possible and beneficial.

Sherry: You and your wife have taken some risks to make this adventure possible. You have sold almost all of your possessions and are using your savings to help finance this mission. Can you explain what emotions you experienced while you went through the process of preparing for this year long journey? Was there ever a “HOLY SH–! Are we crazy?!” moment? Any epiphanies?

Steve: Risk is an inherent part of life. Living in a conventional setting with an unfulfilled dream in our heart was deemed to be a bigger risk–so we decided to at least try. I think failure and struggle are vital components of human development that we as a society have managed to avoid to our great detriment. I am ok with failing or having to pick up the pieces if the money runs out. You definitely have to go all in and commit fully or else what’s the point? No one lives forever–so do what you can, while you are able!

Preparation has basically been DAYS spent on the computer, wishing I could just go out and climb. Trying to make other people care about this project. The most emotionally taxing part of this has been leaving our home and realizing that if this fails we literally have no home to go back to. Leaving our cat has been SO painful because in our absence he hasn’t adjusted to his new home and has run away several times for a week at a clip with no contact with anyone. It may sound weird but he is my little friend, not just a pet. I have never been a very social person and he (we call him Mr. Kitty or Mr. Bear) has always been there for me when people let me down and it rips my heart out knowing tht he is scared and feeling abandoned. I try not to dwell on that part.

Holy Shit moments? Every single day. Especially at night when your mind just goes to those dark places.

Epiphanies…yes…the little things, the small steps–those are where we succeed or fail ultimately in the big picture of things.

Sherry: You are on injections (pens?). Have you ever been on or considered using an insulin pump?

Steve: I am on pens–never been on a pump. I am not against the idea of a pump but I am used to taking shots and I don’t mind it. I am a fan of simplicity and the fact that it is a lot more affordable. I was offered a sponsorship deal from a pump company that would have cost me 400 bucks a month…needless to say, insulin pens started looking a lot better! I am sure that there are advantages to both–I am just more clued in to the advantages of my system because that’s what I know.

Sherry: As a substitute pancreas myself, I have a keen interest on the specifics of how you plan to manage all that diabetes will, no doubt, throw at you while you are dangling from a cliff in the wilderness. What challenges does having type 1 diabetes present while you are climbing and how do you plan to address them?

Steve: Type 1’s biggest challenge is the variability of insulin sensitivity that goes with varying levels of activity. Also, not being able to carbo-load before a big day of climbing can make it a bit tougher to recover AFTER that big day. Otherwise, you just have to be consistent and check a lot. I find that the quality of the foods I eat makes a HUGE difference in the consistency of my sugar. Low GI foods like Clif Bar Builders Bars and raw almonds keep me from spiking or tanking and give me energy when I really need to pour it on. Basically though I have found that everything is based on cause and effect. If you want to be all ready to roll in the morning, you have to take care of your meal the night before. Consistency is key.

I have redefined my relationship with food as part of being a type 1 diabetic–which is something I see others struggle with or refuse to do. That is their choice, but I can tell you without a doubt that I could not do what I do if I was unwilling to view food as fuel rather than entertainment or comfort. That is part of what I want to communicate to others throughout this project. YOU have the power–no, it’s not easy, but it’s POSSIBLE and you will be better off for taking control of yourself!

Sherry: Although I have never rock climbed before, I would think that it takes a well-planned, methodical, controlled approach–much like managing diabetes does. And yet the unexpected can, and indeed does happen with diabetes. Can the same be said of rock climbing? Do you feel the mental and emotional coping skills you have learned from climbing reflect or enhance your approach to managing your diabetes and vice versa?

Steve: Yes. Climbing is not about some RedBull commercial with a generic heavy metal riff playing in the background. Climbing is about self control, discipline and simplicity. That is the same approach that I have chosen in managing my diabetes and the two are inextricably linked, in my mind. Also, both have risks as a very real part of the equation–which is great motivation not to be lax.

Sherry: What suppplies do you pack with you while you are climbing and how do you tote them?

Steve: I usually take a pack of glucose tabs but I have never opened them. I think I have eaten 2 of them in 13 years. I avoid shooting fast acting insulin when I am climbing–I let my activity lower my blood sugar, which keeps the hypos reasonable and treatable with normal snacks. I carry a couple Clif Builder Bars and my meter–depending on the length of the climb, I may leave the meter down at the base of the climb. If it is one long route that will be an all day affair, then I will bring a small backpack that has enough food to last for several days, as well as my meter. When I was guiding, I would always have plenty of Clif bars to give to my clients because I always pack significantly more than I would eat in a given day.

Sherry: The physical demands of this project will, no doubt, be a challenge to manage and your diet will, undoubtedly, require as much careful consideration as your insulin dosing. Can you explain a little about what you will be eating throughout the year?

Steve: As much whole foods as possible. This means food whose identity can be discerned through simply looking at it, not reading a list of ingredients. Fresh, Raw (when possible). Predominately vegetable matter.

Breakfast: usually raw almonds and some form of oatmeal. Possibly part of a Builder Bar too or a little cheese. Eggs with mushrooms are an option too since eggs in their shell will keep for a good amount of time if you are careful with them. Onions, spinach, work great as add-ins.

Lunch: raw nuts, seeds, a salad (yes greens keep without refrigeration if you are creative!) carrots, crackers, Builder Bar, tuna fish with mustard or sardines, trail mix.

Dinner: salad, veggie stir fry (cabbage, broccoli, sprouts, peanuts, hot sauce, black beans) lentils, whole wheat pasta, raw almonds, sweet potatoes, garlic…and so on.

Fruits are always good too–apples and pears keep magnificently, strawberries…etc.

A few miscellaneous items I have recently explored are kale chips, almond butter and nori–and OH MY GOODNESS I am officially addicted. Sadly I am not going to be able to afford that stuff on a consisten basis, but it is super healthy and GOOD when I earn a treat!

Sherry: The publicity you are receiving by doing this gives you a great opportunity to send a message to other people with diabetes or other chronic diseases. What is the message you want to send?

Steve: YOU have the power to be healthy. Diabetes is a challenge but it does not have to stop you from being healthy. It is our responsibility to avoid adopting a victim mentality.

In the words of Captain Sub-text, “ A little suffering is good for you. If you embrace it instead of bitching, you will be better off for it!”

* * * * *

Thank you, Steve, for sharing your story with me. You ROCK! (pardon the pun. ;))

For more information about Project 365 please visit the website here. You can also check out (and “like”) Steve’s Facebook page where there are many more mind blowing pictures to view!

Crafty D-Crafting.

So I’ve been busy helping my girls create homemade Valentines to hand out in class next week. I blame Pinterest for this sudden blast of creative ambition. If you haven’t yet familiarized yourself with Pinterest, be forewarned, it is habit forming. As if any of us need yet another online time-suck! But the cool thing about it is you can get some really neat ideas for crafts and art projects (and a plethora of other topics).

One such project that just dazzled and amazed me was this one:

You take a picture of your child holding out his or her hand as if clutching a lolly-pop, then use some sort of photo editing software to add text and embellishments, print it off, cut slits above and below the fist and feed a lolly through! Is that not the coolest thing?!

So after I had my Valentine fun with this idea, I got to thinking — how could I make use of this idea in a D-awareness sort of way? It didn’t take long for me to come up with this:

 

I think these would be cool to make bunches of and hand out at school events during Diabetes Awareness Month in November or any time there is an opportunity to raise a little awareness. What a great way to educate people about how people with diabetes can have treats too and are not relegated to a sugar-free existence. In fact, this myth is a dangerous one that really needs to be dispelled. We know too well how important and, indeed, life-saving sugar can be to a person with type 1 diabetes.

This project is more simple than it appears. Go ahead and give it a try, whether it’s to create Valentines or awareness!

 

World Diabetes Day Postcard Exchange!

If you haven’t yet heard, there is something going on in the global Diabetes community that you really don’t want to miss. Seriously. I mean, this is sheer brilliance. But then, it comes from the creative genius of none other than Lee Ann Thill of The Butter Compartment — the very same Lee Ann Thill who came up with Diabetes Art Day — so I’m not the least bit surprised.

If you submit your mailing address to Lee Ann, she will then forward it to another PWD (Person With Diabetes) and send you the address of that person as well and then you create a postcard incorporating the World Diabetes Day blue circle in the design, then you complete a mini D-meme on the back with details such as your name, your address, your connection to diabetes, etc., then you mail it off to your recipient and that person will return the favour! The idea is to make connections with people in other parts of the world who know the D as you do. It is a way to feel less alone — to connect.

But you should really just head on over to Lee Ann’s blog and read her description. She has all the need-to-know details there for you, including her email addy.

I am really chuffed about Jenna being a part of this. I know she will be tickled to get something in the mail from someone who “gets it”. Heck, she’ll just be revved to get her own piece of mail! And if this becomes an annual event (as I’m confident it will), she will look forward to World Diabetes Day every year for such a fun reason.

Anything that helps Jenna and others with diabetes feel less alone in this, as well as gets people’s creative juices flowing is a beautiful thing.

Imagine.

There’s a saying that goes, “If you can imagine it, it can be achieved.”

I invite you to join me in daring to imagine a cure.

They’ve done it! Those scientists who have been accepting our steady flow of hard earned donations and working tirelessly for many, many years have finally done it! A CURE for our babies — our children, young and old!

It wasn’t easy, and the faith of many faltered along the way. Promises were broken time and time again and it wore us down. How could we continue to believe in a myth that only served to disappoint and deflate our spirits. And as children with diabetes grew into adults with diabetes and learned by necessity to live with this ruthless disease, their dreams of a cure became as distant a memory as their diagnosis stories. The repeated disappointment was too much to endure. They watched as more children were diagnosed and given the same promise of a cure. They knew better, but they couldn’t crush the spirit of the newly drafted recruits. It was all they had to help them through those first few years after diagnosis. Besides, they’d find out over time.

But the headlines read “A CURE AT LAST!” on the papers today and told of hundreds of thousands of people rejoicing in the streets all over the world, planning the parties to celebrate their new freedom — freedom from the injections, finger pokes, site changes, carb counting and the constant, never ending struggle to regain and maintain blood glucose homeostasis. Freedom from the fear of losing our precious, precious children in the night as they sleep. Freedom from the worry about long term complications, some of which are too horrible to mention.

Indeed, the road has been long and fraught with set-backs. Years of hurting families gathering together to walk for a cure, struggling to stay positive but each year without a cure casting a little more shadow of doubt on their already broken hearts.

But no more.

No more walks are necessary. No more fund raisers. No more funerals for children stolen by an invisible bandit known as “Nocturnal Hypoglycemia” or the more macabre name “Dead-In-Bed syndrome”.  The goal has been reached! The cure will be made available to humankind and this relentless, ruthless, lawless disease will become extinct — a part of our history. We will be teaching future generations about the age before the great cure. It will be known as the second dark age. Because along with the cure for type 1 diabetes came a better understanding of the human immune system and set in motion a chain of events that would make possible, more than ever before, a cure for many other auto-immune diseases, including cancer.

Type 1 Diabetes is no more.

A cure.

A CURE.

Let’s get the job done. Let’s do this for all of our children and for all those we have lost.

Bathroom Art!

Today is the second annual Diabetes Art Day. Lee Ann Thill of The Butter Compartment came up with this fantastic idea to give people a creative outlet, bringing together the Diabetes community in a way like no other.

And bring us together, it has. The creative capacity of our community is astounding. The unique way each of us interprets our own journey with diabetes is impressive and thought provoking.

This year, I saved some diabetes trash instead of recycling it. I had been collecting stuff since the start of the summer in anticipation of creating something for this day. I wasn’t sure what we would do but I had no doubt that between myself and the incredible, creative capabilities of my two little girls, we could come up with something exciting.

So, on a rather tight budget, we visited the craft store for more inspiration. I wanted something to ‘hot glue’ some of our D-junk to — a form of some sort. Jazmine pointed to a twig wreath and since the price was right (under 4 dollars!) I jumped on her suggestion. We also found a string of white lights, some blue pom-poms and blue glittery spiders, and so the “Glittery, Spidery Circle of D” was born:

"Glittery, Spidery Circle of D"

Only blue insertion devices were attached, in keeping with the whole World Diabetes Day blue circle theme. Jenna envisioned using the pump tubing to create the spider’s web in the centre of the wreath and so that’s what we did. Jazmine – my deep, thoughtful, almost-eight-year-old, explained that the spider’s meaning was in reference to the constant, ongoing hard work D management is — much like the hard work a spider must engage in to construct its web to survive. A meal certainly doesn’t come easy to the spider. And the same could be said about a person with diabetes, in a sense. I was so proud of Jazmine for her depth and insight and her incredible grasp of artistic symbolism at such a young age.

As pleased as I was with the results, it wasn’t the easiest piece to photograph. Hanging it up somewhere where I could plug in the lights and where the backdrop wouldn’t detract from the piece was incredibly challenging. I ended up taking a suction cup hook thingy and hanging it on the mirror of my bathroom where a plug was available. I played with the exposure and colour saturation to make the wreath pop and hopefully to make it less obvious that we were in a bathroom, of all places, even though I’ve heard that Jim Morrison recorded the vocals for “Hyacinth House” in a bathroom for the unique acoustic properties. So this isn’t the first time art has been enhanced by the distinct ambience of the loo. If it was good enough for The Doors, it’s good enough for me.

So there you have it. Our contribution to Diabetes Art Day 2011. If you would like to check out what we created last year click here.  Now I’m going to go check out more art on the Diabetes Art Day site.

Hey! You should too! Come on!

Stuff. Very Important Stuff.

Summer stuff beckons but I absolutely must take a few moments to post some important tidbits. So are you ready for another, bulleted JPM post? Here goes:

  • Did you catch me featured on D-Mom Blog yesterday? Yup. I was there. If you missed it you can nip on over now, or better yet – after you finish reading my post. Just click the shiny button you see here.

  • I recently did a little online shopping over at Lexi’s Misbehavin’ Tees. She has a pretty cool lil set up over there. $3 from the sale of each tee goes directly to JDRF.  You need to go check that out too. I purchased two tees:

This one is for my husband. Now if only the girls didn't know how to read...and weren't so darn inquisitive.

This one's mine, except I'm still wondering what this "sleep" thing is that it mentions.

  •  Finally, it has come to my attention, and to that of the mighty Diabetes Online Community (affectionately known as the D-OC), that a profoundly uninformed individual named Wendell Fowler has been spreading misinformation and lies about diabetes. This individual actually had his dangerous, hurtful and false opinions published in a newspaper called The South Side Times. You can read his drivel article here.  Just cruise through the comments and you will see how upsetting his ignorant message is to those of us that are closely affected by diabetes. But the comment that I personally think kicks ass – likely because the author is a friend of mine and a fierce advocate for people with diabetes – is Kelly’s, affectionately known as K2. She blogs at Diabetesaliciousness and she is awesome. I love her response so much that I didn’t just want to link to it, I wanted to post it here in it’s entirety. And having received permission from Kelly, I have done just that. So sit back and enjoy the magic that is K2…and be thankful she is on our team.

Wendell – You speak of of magic and truth for the greater good – And I agree, truth for the greater good is indeed magical.
However your article is neither truthful, magical or good.
On the contrary Wendell, your article is incredibly dangerous, grossly offensive and guilty of perpetuating diabetes myths and stereotypes in the media and to the public. Speaking of your job Wendell, you’re research skills regarding both the event and people that your writing about SUCKS.

Diabetes is not “avoidable.” Are you even aware of the various types of diabetes?

Type 1 diabetes is certainly not avoidable, and just so we’re all on the same page, the event you so carelessly mocked was held to benefit “The Diabetes Foundation of Indiana,” an organization devoted to providing both education & support to children with type 1 diabetes. Smooth move, Wendell!

Type 1 diabetes is an autoimmune disease. The body of a person with type 1 actually attacks the part of the pancreas( the islet of langerhans) that produces insulin (which every human being on the planet needs to live) and destroys our ability to make our own insulin, rendering those of of us with type 1 diabetes depend on injections for the rest of our lives. Your diabetes myths of SUGAR CONSUMPTION & LACK OF EXERCISE HAD NOTHING TO DO WITH IT.

As a type 1 for over 30 years, I was diagnosed as a skinny 8 year old little girl. I was 20 pounds under my normal weight at my diagnoses. Undiagnosed type 1s resemble starvation victims because of our inability to make insulin actually starves our cells. I come from a type 1 family.
2 of my sisters had/have type 1, as did my father, my 2 aunts, my cousin & my brilliant and talented nephew. We did nothing to deserve our faulty pancreases and sugar consumption had nothing to do with our diagnoses! If it were that easy, my family would have gladly given up the demon sugar years ago!
As a matter of fact, I indulge in ice cream from time to time (cupcakes too) and my Endocrinologist (one of the top in the country) is more than fine with that.
As a person who lives with diabetes,I test my blood sugars litigiously, sometimes as many as 14 times a day. I count the carbs for every piece of food I put in my body and then administer the proper dosage of insulin to cover said carbs & blood sugars & I haven’t had a day off injecting insulin into my body for 33 years.
Now Wendell, if you can find away for those of us with busted pancreases to magically start producing our own insulin, go for it man – knock yourself out.
If you could do that, you could win the nobel prize for medicine and become a hero to millions – if not billions, and you’d never want for money again. Monuments would be built in your honor and every family would name at least one of their children Wendell (regardless of gender) and there’s a good chance the Vatican would anoint you the first canonized living saint.

But….. I’m not going to hold my breath.

And as far as my diabetes brothers in sisters in the type 1.5 Diabetes or LADA (latent autoimmune diabetes in adults) and type 2 branches of my diabetes family tree are concerned, – they are not carry the shame and weight of society’s blame either.

Type 1.5 LADA Diabetes is (and this is the Cliff Notes version) also autoimmune related and occurs in normal sized adults (mostly) who gradually lose the ability to produce insulin. Their inability to produce insulin usually occurs within months, have positive diabetes antibodies and low c-peptide levels.

Type 2 Diabetes is a considered a metabolic disease/disorder and genetics plays a large part in a person Type 2 diagnoses. Yes, weight and food are also known factors. But I know many type 2s who eat right and who aren’t over weight. Unfortunately, their parents, grandparents, and great parents were all insulin resistant.

And as long as were pointing fingers, how about you look in the direction of food manufacturers who over process the foods they produce and replace sugar with High Fructose Corn Syrup (HFCS) so they can have a larger profit margin.
Do you really think its a coincidence that in the past 40 years, since HFCS was added to our diets in ever increasing amounts, America’s weight has continued to climb?
FYI: HFCS is outlawed in Europe.

And here’s where more damage is done because of what you wrote.
YOUR WORDS directly effect fundraising and research efforts for a diabetes cure. People tend not to donate research funding when they think the people living with a disease “deserve what they get.”
I can assure you Wendell, nobody deserves diabetes, regardless of the type.
And HOW DARE YOU put research for a diabetes cure in jeopardy!

So before you write about my disease,and a disease that many of my friends; family, and coworkers have, take the time to at least GOOGLE! Take the time to know ALL the facts,do you’re research, and stop the diabetes blame game!

FYI: Karma is a bitch! And if you think Karma is a bitch, wait until you encounter “Diabetes Karma.”
Diabetes Karma is when people with diabetes, or who’s friends, family and loved ones who have diabetes read your callous words – And start to make noise.
And by noise I mean emails and calls to your editor; publisher and the many advertisers of the SS-Times, and let them know exactly how we feel about what you wrote.

You want Karma my friend, YOU GOT IT. You wanted people to talk about your article? Congrats – We are talking! And we are writing; posting, facebooking, tweeting, & picking up our phones. Our numbers our strong & our voices are very loud and we are incredibly passionate about our diabetes cause!
Sincerely
Kelly Kunik

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