A family living well with type 1 diabetes.

Posts tagged ‘the diabetes community’

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!

The Facts

I’ll be honest, I’ve been censoring myself. I’m afraid.

I’m afraid of posting too much negativity and offending people. And it’s not just here on my blog; I’ve been censoring myself on my facebook page too. I know people don’t like to read upsetting things, especially if it doesn’t pertain to them personally, so I have been trying to avoid posting too much upsetting information and news about diabetes. But that isn’t very honest of me, is it?

Many in the DOC have been talking about something. It is the most horrible side-effect of taking subcutaneous injections or infusions of insulin: nocturnal hypoglycemia resulting in death. The victim just never wakes up the next morning. This is a terrifying phenomenon. And I’d love to say that it is also a rare phenomenon, but that just doesn’t seem to be the case–not according to the latest findings.

1 in 20. Let’s do some math: thats 10 in 200, 100 in 2000, 1000 in 20 000! Does that sound rare to you? If you had a child on insulin therapy, thereby putting your child at risk of suffering this fate, would that be acceptable to you? Would you be comfortable with that? How many is too many? At what point do we, as a society, stop and say, “Shit! Something must be done!”

I don’t want to be a Debbie-Downer. I’m actually quite a positive person. But I am also a realist. I don’t shove my head in the sand, or for that matter, in piles of glitter. It’s just not how I choose to live life. I prefer to know what I’m up against. Knowledge is power. The only way to change this statistic is to get people pissed off about it. And the only way to do that is to share the information.

For, you see, we keep losing our children. They are still dying in their sleep from nocturnal hypoglycemia. It is happening. It seems like every few weeks I learn of another family who kissed their precious child goodnight one night and never got to kiss them good morning the next day. And I’m tired of it. I’m mad. I’m heartbroken.

Admittedly, I am also afraid. I don’t live every waking hour in fear for my daughter’s life, but I do admit that not a day goes by that I don’t worry about her. That worry is pronounced at night. It’s what compels me to get up every night, sometimes more than once depending on the circumstance, to check Jenna to make sure she is safe. Those routine checks have caught countless lows and thwarted many disasters.

We can’t just sit quietly by and accept these tragic losses. We can’t just shrug and say “well, that’s the nature of the beast known as diabetes.” Tell that to the families who have buried their children.

And I can’t censor myself and pretend that everything is just fine. It isn’t. We walk a fine line every day and every night. We act as our children’s pancreas–our children’s imperfect, clumsy, inadequate pancreas. We are on-call, 24 hours a day, 7 days a week. We must be prepared at all times for the unexpected. We must be diligent.

We fight every day and every night to avoid our children becoming statistics.

We want the world to know.

We want a cure.

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.

Dust Off Your Runners!

Okay. I’ve been terribly remiss. I’ve been like a dog chasing its tail – easily confused and distracted by shiny things, an unfortunate side effect of chronic sleep deprivation and a busy schedule. Something big is afoot (ha!) and I’ve not blogged about it yet! So without further ado – and before the next butterfly flutters by capturing my attention – lets talk 5K.

The awesome Reyna of Beta Buddies, has an amazing sister named Tara. Tara is a running machine. I mean, this woman doesn’t just run marathons, pfft! She trains for and runs ultra marathons!  We’re talking 30 miles or more (sometimes over 100 miles) of straight running! And she LOVES it! (You’d have to, wouldn’t you?)

She is incredible. Don’t believe me? Go check out her blog here.

But it’s not just her incredible running ability that makes her amazing. It’s also the remarkable support she is extending to her sister, Reyna, a fellow mother of a child with type 1 diabetes. Recognizing the urgent need for better treatments and a cure for her nephew and everyone living with type 1 diabetes, Tara decided to put her passion for running and her love for her family to work and came up with The Virtual 5K. Wendy at Candy Hearts has a fantastic post up that includes an interview with Tara and what motivated her to initiate The Virtual 5K. Clearly, awesomeness runs in this family.

This is an event that anyone can register for and participate in. You don’t have to have diabetes or have a child with diabetes or be a runner. You just have to want to help make a difference. But the deadline for registration is fast approaching. More participants are needed to meet Tara’s fundraising goal. So go here and check out the details of the event, then go here and register to participate!

I’m in. Are you?

We Walked.

Last Sunday was our third JDRF Walk To Cure Diabetes.  We are proud to say we came within 15 dollars of our goal of $1000.  We have many dear friends and family members who continue to support our passion to find a cure for this relentless disease.  Without their help we wouldn’t have done nearly as well in our fundraising efforts. But what is just as important (sometimes more so, even) is that we would feel more alone and misunderstood without the compassion and understanding of these dear, caring people. Diabetes can be a very lonely journey. The love and support of friends and family is crucial to the overall wellbeing of people with type 1 diabetes and the family members who care for them.

The walk was a success with our city raising over $100 000 for JDRF. The weather was more than cooperative and, with the exception of a poor choice of footwear for Jenna that I foolishly endorsed and rued my poor judgement for the entire walk as J and I traded piggy-back duty, our little family team enjoyed spending a couple of hours mingling with other D-families.

A pensive Jenna with her balloon animal.

To kick off the walk several people spoke to the crowd. One such person was Sarah, the woman I had serendipitously met only a couple of weeks earlier at a kids clothing store. Sarah, it turns out, is a real firecracker at fund raising. Dressed in a wedding dress she addressed the crowd, explaining her attire as a fundraising initiative to create a buzz and get people asking questions.  In essence, it was a way to get attention. She and other friends of hers dressed in wedding attire and called themselves “Brides Gone Wild”. They walked the streets of the city the night prior in a successful attempt to raise awareness and raise money. Her team accumulated $11 000 for the JDRF.  That’s eleven THOUSAND dollars! Impressive.

Sarah spoke to the crowd, giving a speech that was very emotional. It cut straight to the heart of every parent of a child with diabetes in attendance. After her speech she left the stage and made her way through the crowd. I was lucky enough to be in her path and I stopped her. Her eyes were red and her face full of emotion. I hugged my new friend. My fellow D-Mom warrior.

I asked her if I could somehow get a copy of her speech. Without hesitation she handed me the copy she had in her hand and gave me permission to print her words on my blog. She explained that her passion is raising awareness. Raising funds is secondary. She wants to make the world a friendlier place for our children who have been burdened with a disease that has so many unfair stereotypes and misconceptions surrounding it. She wants to educate. I couldn’t agree more.

Here are Sarah’s poignant words:

Last night I was a bride gone wild. Today I am an overdressed Mom determined to do whatever it takes to find our kids a cure.

Sarah giving her moving speech.

This past winter my husband and I taught our kids to ski. We started nice and slow on the bunny hill. Easily picking our kids up when they fell on the gentle slope and easily keeping them within arms reach.

Type 1 Diabetes is a lot like learning to ski. Except that you  don’t start on the bunny hill. You are thrown on the chair and when you get to the top you discover the only way is a double black diamond run and there is so much fog you can’t see the way to the bottom.

You realize very quickly that you are never going to get down safely without a community of support to guide you.

We are all here today because we are either on the icy slope or we are part of someone’s team.

[We are] Mothers that love [our] kids fiercely. Mothers, that have built teams of support that help their children live their best lives.

Janice is also a mother who loves her son fiercely. Tragically, her son, Kody, is no longer here with us. In March of this year, at the age of 22, Kody passed away from Diabetic Ketoacidosis.

Diagnosed with Type 1 Diabetes at the age of three, Kody had his ups and downs and challenges with Diabetes but he never let [it] keep him from doing anything.

Growing up … Kody had a great team of support, but as a young adult, Kody said his Diabetes was just another problem he had to solve. He thought he could do it on his own but everyone living with Type 1 Diabetes needs someone to watch their back.

In Prince George, where Kody was living at the time of his passing, he did not have a team looking out for him. If he had reached out and educated those close to him about his disease they may have recognized the dangerous warning signs. He might not have passed away.

Many people living with Type 1 Diabetes are embarrassed to share their disease with friends and co-workers because there are serious misconceptions associated with the word Diabetes and it won’t change unless we speak up and educate the larger community.

Don’t brush it off as no big deal. We all know that Type 1 Diabetes is a 24 hour, life threatening disease, that couldn’t have been prevented. By speaking up and advocating about Type 1 Diabetes we will grow our small community of support into a large one.

When we begin changing these misconceptions we make it easier for our teens … to build their own team that will have their back when they eventually leave the support network their family’s have carefully built for them.

Today we are walking … because a cure is our only way off the icy slope.

…. In the words of Frank Sinatra: “Walk on through the wind. Walk on, through the rain. Though your dreams be tossed and blown. Walk on, walk on, with hope in your heart. And you’ll never walk alone. You’ll never walk alone.”

… so don’t walk quietly. Walk loudly. Lets make ourselves heard. Lets start spreading the awareness.

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