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Posts from the ‘Diabetes Advocacy’ Category

Guest Post: #Insulin4All Protest at Lilly

T1International founder Elizabeth Rowley guest posted before the #insulin4life rally in Indianapolis, and today her colleague Karyn Wofford is taking over SUM to share more about the protest itself, their goals, and how the diabetes community can continue to help.

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For nearly 18 years, I’ve had type one diabetes. I’ve been on “life support” via insulin over half of my life. I heard another person with type 1 diabetes refer to it as life support, and that really struck me. When we think of that term, we envision an ill person with breathing tubes, heart monitors and a medical team surrounding them. Diabetics truly are on life support, but it’s invisible to those around us and comes from a small glass vial or plastic pen.

When in my teens, I woke up every day and took what I saw as mere “medicine” to treat my disease. It wasn’t until I grew older and had legitimate fear of not being able to afford insulin, that I no longer thought of it as medicine. I know now it is life.

Speaking out at the #Insulin4all Demonstration

On September 9, I gathered with people with type 1 diabetes, parents, and others who had been directly impacted by diabetes to speak out in front of Eli Lilly Headquarters in Indianapolis. We spoke out against outrageous insulin prices that are likely a result of price gouging and collusion among the “big three” insulin manufacturers. Prices have been jumping in leaps and bounds over the past 20 years, and now have reached a point where patients are paying more than their mortgage to foot the monthly bill. Lives have been lost so these companies can pull in sickeningly high profits.

T1International served as the primary organizer of the event, while People of Faith for Access to Medicines (PFAM) was a huge contributor whose representatives went above and beyond to make everything happen without a hitch.

Just a few years ago, I started becoming much more vocal about having type 1 diabetes. I’d finally realized that there was so much I could do to raise awareness and educate people about the kind of diabetes I have, type one. Awareness is an invaluable tool in our fight for affordable insulin, because there is great misconception that type ones can just stop eating sugar to “treat” or “fix” our diabetes. Of course, this is untrue. No one’s body can survive without insulin, and people with type 1 diabetes cannot produce insulin, so the medicine in essential to us. Insulin = life. I was able to voice this at the demonstration, along with my personal struggles.

A Community Uniting

At the demonstration, I was moved hearing the stories of Mike Hoskins and Angela Lautner, who also have type one diabetes. Instantly, I felt a connection with them, and an overwhelming sense of community amongst all those who attended. The energy in the crowd was contagious; people who’d only met moments before were lending shoulders to cry on and unifying as a force. I think we all realized something really special had been ignited, and we are eager to keep pushing forward.

Clever chants and signs were aimed at the enormous central Eli Lilly building across the street. One protestor toted a Frederick Banting doll, while others wore shirts with phrases such as “give me insulin or give me death”. Everyone was loud, powerful and to the point, with no fuss or crazy antics. We didn’t want to cause anger, we wanted to provoke thought. A powerful message executed with passion and constructiveness was the core of the rally.

I heard many stories, like the one of a grandmother caring for her preschool-aged, type one grandson. Her life is consumed fighting for his rights and ensuring he has a future. Another mother was there with one of her three diabetic children. I struggle with the costs of only myself; I can’t imaging paying three times that amount.

The Impact

Local Indianapolis news cameras and reporters were amongst the group, and our cries to Eli Lilly were amplified. A response was released from Eli Lilly later that night:

“We are pleased that people in the diabetes community are engaged in this issue and demonstrations are one way to do so. It will take continued effort across the healthcare system to affect real change and Lilly is committed to working with others to make it happen. This topic sparks a passionate response from people who are affected and we are committed to finding solutions. Lilly has been an active participant in the insulin access dialogue for a long time, and that work will continue. In the last year, we have introduced a number of initiatives to help reduce the amount people pay at the pharmacy until broader changes occur.”

It is encouraging that we caught their attention and received a response, but people with diabetes know that current programs are only short-term fixes, or “bandaids”, as noted by an Eli Lilly Representative. On the day, we asked for three things, and we continue to ask Eli Lilly and the other insulin manufacturers to address them.

  1. Be transparent about how much it costs to make one vial of Humalog insulin
  2. Be transparent about your profits from each vial
  3. Lower the price of insulin

We are hopeful we can achieve this, especially as we ensure that the nation understands what exactly it means to have type one diabetes, or to be insulin dependent. We hope that our next stops will include New Jersey based insulin companies Novo Nordisk and Sanofi, as they are as much to blame as Eli Lilly.

A fire is burning in the hearts of those impacted by insulin prices, and with six million Americans depending on insulin to survive, this movement is anticipated to become an uprising people can longer look away from. The Eli Lilly #insulin4all demonstration has moved the online initiatives to in-person confrontation that cannot be ignored. If more and more people take a stand, we can make lower insulin prices a reality.

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Karyn Wofford is a writer, type 1 diabetic and advocate. She’s had diabetes for nearly 18 years and now serves as an advocate for T1International. Her goal is to raise awareness about her disease, while providing support for fellow people with diabetes through her writing.  

Guest Post: Mindy Bartleson on Chronic Illness, Mental Heath, and Removing the Rose Colored Glasses

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much.  Today, she’s sharing the why behind her efforts on SixUntilMe.

And if you’d like to help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word.  The Kickstarter ends a week from tomorrow.

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Usually, there are multiple things going on. It might be visible. It may be shared. It could be a secret- only shared with your inner circle. Even without a mental health diagnosis, mental health is an important thing to keep in mind with chronic illness, like diabetes. Hell- even without a chronic illness- mental health is important. Sadly though, it’s something that isn’t often talked about or taken seriously. It’s taboo. It’s not important. It’s hard to understand. You name it- we’ve heard it. Social norms also play a role. We’re supposed to be productive members of society and not acknowledge anything negative.

Over the years, I’ve adjusted my blog.. I wanted to talk about it all together- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. I didn’t used to do this. It wasn’t until diabetes burnout hit me with full force when I was in college. That’s when I realized something. Up until that point I wouldn’t acknowledge the negative parts of diabetes- of chronic illness. I thought I had to pick a viewpoint and couldn’t move. I had to either be positive or negative so I found myself not only lying to the world around me, but also to myself. That’s when I switched how I approached my blog and life.

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That it’s hard. That maybe there are systematic things that play a part too. That I should still check my privilege. That’s what life is. It’s what I needed to do.

We need to talk about and share those moments- not just for ourselves but for other people who need that honesty to know that they are not alone. We need to share the moments where we sit crying on the bathroom floor because diabetes wouldn’t cooperate all day and someone made a hurtful comment. Then we can share how we got back up to change that pumpsite and maybe to tell that person who made the hurtful comment how we feel. The how is so important. The fact that we get back up is so important. But- maybe someone needs to hear how we felt when the tears hit – how we felt when you just had enough – how it felt to let it out. We need to do that.

About two years ago, I made the decision to start a project. I decided to write a book about chronic illness and mental health. Everything I’ve talked about so far is what I applied to writing this book.

I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride. I talk about moments of why I sat on the bathroom floor crying and how I got up. Of course I talk about more- and it wasn’t always a bathroom floor.

Over the past two years, writing this book has pushed me to process a lot of my past. All of it. I’ve seen how far I’ve come and realized the importance of so many situations.

I’m pursuing self-publishing. Because I recently graduated college (and put myself through it so I have loans) and have a social work degree, I’m utilizing crowdfunding to make this happen.

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I’ve put my money where my blog post mouth is and backed Mindy’s campaign, as I think this resource would be a powerful one for our community as a whole.  Mental health is health and I agree it needs to be talked about, shared, and cared for as openly as diabetes.  

For more from Mindy, you can follow her on Instagram, Twitter, Facebook, and her blog “There’s More to the Story.”  

 

Giving It Another Go

I have been trying to write a post since this morning, but my website keeps eating the content and/or refusing to save.  It did let me post the technical difficulties picture earlier, but I think that was mostly out of pity.

Hopefully this post works.  Let’s see …

  • I’ve been quiet on the blog lately, not entirely because of technical difficulties (that was only today) but because summer plus two kiddos rocked my productivity world to its core.  All humans who live in my house are safe and well-cared for but everything aside from that has become dust bunny-infested.  School starts in a few days, and I’m exploring some part-time childcare options for the little Guy, so that should free up more time for me to actually get shit done.
  • Lots of links to share, though.  My inbox, when I have a minute to comb through it, is crammed with useful information I keep meaning to read and then not finding time.  (Related:  I have 23 open browser tabs on Safari right now, and another 10 on Firefox.  I’m in browser hell but I can’t bring myself to actually shut any of the windows SEND HELP!)
  • Links like this … Tandem has finally announced their Dexcom G5 update, and I am wicked excited to make improvements to my insulin pump from the comfort of my home on a Saturday morning – updates on the update once I do it..  Yaaaas convenience (and also yaaaaas queen only this version because John Oliver and also what the hell does yaaas anything mean?  I miss grammar.).
  • The team at Beyond Type 1, after taking over some of the TuDiabetes properties a few months ago, has officially relaunched EsTuDiabetes as Beyond Type 1 en Español.
  • “What experts have long debated, however, is whether reducing the depression can also help control diabetes.”  I’d like to think so.  This article agrees.
  • “Any creatures misappropriated from local zoos should be returned once liberated from your child’s pelt.”  Thank you, McSweeny’s, for How to De-Feralize Your Children for Back to School.
  • Are you in the DC area on October 6 – 8?  The Children with Diabetes Falls Church event is taking place that weekend.  Information is here.  Information plus inspiration will be found there.
  • What you should know about closed looping, from the godmother of DIYPS herself.
  • “Amidst the terror of having to grab essentials and flee their homes, they had to think about keeping diabetes supplies above water: How am I going to handle diabetes through this? Can I bring everything with me? What if everything is not enough?”  This post over at A Sweet Life about PWD and Hurricane Harvey is terrific – read for yourself and see how you can help.
  • And lastly, but not the least bit leastly, September is Childhood Cancer Awareness month.  Please visit Lindsay Rhoades’ website, Kate’s Cause, and do everything you can to help until childhood cancer is extinct.

Happy weekending.  Here’s hoping the Internet doesn’t eat this when I hit publish …

Diabetes on the North Coast Trail

Everyone involved with Connected in Motion impresses me; their sense of adventure coupled with their ability to jam diabetes into those adventures is something I draw inspiration from.  (Come on … go look at their social media feeds and tell me you don’t want to be part of something that explores this kind of landscape.)  Their community is centered around empowering people with diabetes to explore, take responsibility, and get outside.

This week, 13 members of the Type 1 community are coming together to take on an epic adventure – completing the North Coast Trail – a 60km trek on the northernmost tip of Vancouver Island, British Columbia, Canada.  They’ll travel by air, van, boat, and foot. On the trail they expect river crossings, beach trekking, miles of mud to their knees, ladders, and rope rappels (all while carrying 70L packs), bringing diabetes along on one of the most challenging backpacking treks.

Even though I’m not in a position to join an adventure team this year (adventures in parenting taking precedence at the moment), I am really excited to follow along with the crew as they travel this week.  I’ve been watching the social media feeds with interest, like this one, with careful packing all planned out:

“Since 2008, I’ve used my background in anthropology and journalism to promote the idea that peer support and experiential education play vital roles in sustainable health systems and I’m honored to have this opportunity to help tell this CIM Adventure story,” said Blair Ryan, official photog of the 2017 adventure team. (Those are the contents of her pack in that photo up there.)

I think about what I bring to leave the house, just for a few hours, with diabetes.  My purse always has glucose tabs, an insulin pen, snacks, a back up infusion set, and my glucose meter.  This is simply to walk out of the house.  Keeping those supplies close makes me feel safe.  Packing a backpack with necessary life supplies and wandering off into the woods taps into some of my biggest diabetes-related fears (namely not being adequately prepared for trouble), making me admire the Connected in Motion adventure team even more.  

They aren’t afraid of being caught off guard.  In fact, they plan on it and plan for it.

“We’ll be thinking about where the best place for each of us to put our pump and CGM sites are before hitting the trail. We’ll avoid places where our packs will consistently rub (certain areas on our stomachs), or places that might get snagged when loading up a heavy pack (certain areas on the arms),” said Jen Hanson.

Join the Support Crew and Cheering Squad Facebook group to send the adventure team your encouragement, and to see where they are in their journey.  You can also follow along with the adventure team on Instagram, twitter, Facebook, and through the Connected in Motion website.

Safe travels to all our fellow PWD!  <3

Looking Back: Language and Diabetes.

In combing through some older posts, I found this one about language, and the words we use.  (Older post here)  How I talk about my diabetes influences how I feel about it, or how it can make me fee.  Which is why I wanted to revisit this post this afternoon, looking back to last year’s Diabetes Blog Week.

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Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

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