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Posts from the ‘Diabetes Online Community’ Category

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

Guest Post: People with Diabetes are Demonstrating for #insulin4all

Today’s guest post comes from Elizabeth Rowley, director of T1International – an organization working towards sustainable access and affordability of insulin, diabetes supplies, medical care and education for all people living with type 1 diabetes.  They are planning a protest at Eli Lilly on September 9th, and Elizabeth is borrowing SUM today to share the who, what, where, and why of that plan.

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The diabetes community has watched in agony as the prices of insulin have increased again and again, with the most recent outrageous increase of 7.8% by Eli Lilly. To get right down to it, the list price of Humalog was $274.70 per a vial as of May 2017. That’s a price increase of 1123% since June 1996.

Insulin manufacturers keep the cost of insulin production a tightly-guarded secret, but U.S. prices are likely hundreds of times higher than the cost of making the drug. Patients in the U.S. and internationally have died due to an inability to afford insulin, and physicians report seeing an increasing number of insulin-deprived patients coming into emergency rooms in crisis. The insulin price increases have been called “price-gouging, plain and simple” by U.S. Senators and a “racket” by an endocrinologist writing in the New York Times.

We in the diabetes community have expressed our frustration online, in meetings with these companies, and in numerous blog posts. T1International has also had conversations with some of the “big three” insulin producers about insulin affordability, but unsurprisingly we were met with standard PR responses and blame shifting. Some of our other attempts to talk have been ignored, but the diabetes community as a whole has been talking to Lilly and others about these issues for a long time. Eli Lilly, Sanofi, and Novo Nordisk know that people are outraged, suffering and dying because insulin costs too much.

I think most of us can agree that none of the concerns that have been expressed have been taken seriously enough. Taking patients concerns seriously does not mean somber conversations, hosting forums with advocates or creating limited charity programs. It means actually making insulin affordable and not wringing every last dollar of profit out of desperate people. It means putting people before profits because pharma’s prices are putting people in danger.

That is why an #insulin4all demonstration is being held outside of Eli Lilly’s headquarters in Indianapolis on September 9th. People with diabetes are demanding change.

Specifically, we are asking Eli Lilly for three things:

  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. Stop the immoral act of price-gouging and lower the price of insulin

graphic provided by T1International

Why Eli Lilly, you ask? The location of our partner organizations, People of Faith for Access to Medicines and Public Citizen in Indiana, makes Lilly a good first target. On September 8th, in solidarity with the protesters, we will also be holding an online day of action about insulin pricing – addressing all three players in the insulin market.

We know that Novo Nordisk and Sanofi are just as much a part of the problem as Eli Lilly, and that all of them must be held accountable. We are very open to planning something similar outside Novo and Sanofi in the future, so if you want to help organize, please get in touch!

These companies’ business models are dependent on government decisions about regulations and bulk purchases of their products, so the companies absolutely will provide transparency and lower prices if the people and their representatives demand it. This demonstration can amplify our cries and raise public awareness that the price gouging must be reined in. We believe the momentum will continue to build, and we hope you will join us in speaking out.

If you are planning to attend the Indiana demonstration or want to stay up to date with the event, join us on Facebook in our #insulin4all Action group.

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Elizabeth Rowley is the Director of T1International. She was born in the United States and has lived with type 1 diabetes for more than 25 years. Elizabeth moved to London in 2011 to complete her Master’s degree in International Development at the London School of Economics and Political Science and she founded T​1​International in 2013. T1International’s aim is to unite the diabetes community and advocate for equal access to insulin, diabetes supplies, medical care and education for all people living with type 1 diabetes, no matter where they live. Elizabeth believes that where you were born should not determine whether you live or die with diabetes, and she is confident that by working together we can find long-term solutions.

 

 

In Sickness and in Health: My Partner Has Diabetes.

A week or two ago, I received a message from a reader asking about the influence diabetes has on my marriage.  I took to Facebook to get some broader feedback, but the question forced me to drop into the weeds to see how my diabetes touches my marriage.  This will be part one of a two part post, with today’s focus on the people in a relationship who are in a relationship with someone who has diabetes.  Read yesterday’s post here.

As the person in my marriage who hosts diabetes, I struggle to see things from the other side.  Which is why I’m really grateful for the partners of PWD who offered their take on diabetes and marriage, because it’s some great insight on what diabetes looks like “from the other side.”  Whether diabetes was part of the family before the wedding or came into effect after the vows, diabetes can add some intensity to the relationship equation.

Brian “married into diabetes” and shared some thoughts with me. “[My wife] Laura was diagnosed really early in our dating relationship, so it’s something we learned about and have always dealt with together. It certainly tested and proved our bond in the beginning. Now that we’ve been married (almost) six years, it’s simply a part of our lives.  I’d say the biggest struggle for me is that we generally are partners in everything we do. But with diabetes, no matter how supportive I am and how much I try to help, we’re never really partners because it is always hers to deal with. No matter how much we confront it together, she is always facing it alone.”

A female friend who wanted to remain anonymous said, “My husband has had T1D for 25 years and we’ve been married for 9. Diabetes doesn’t necessarily affect our marriage in a tangible way. It’s an underlying current. It’s little things like having to stop for juice 10 minutes into a family road trip, wondering if he’s cranky because he had a bad day or if he’s high or low, or whether the insulin pen he left on the kitchen counter is the long-lasting one or the one he should have taken to work. It’s developing the ability to know if he’s low simply by the look in his eyes. It’s understanding that he always gets low when he mows the lawn. Other than the absolute horror show of having to deal with our insurance, I feel like we do a pretty good job of not letting it affect our everyday life. But we also try to understand that, no matter what, it affects his everyday life.”

Meredith is married to Harry (who has T1D), and they have a daughter close to Birdy’s age.  Meredith said, “It makes me worry. Not just worry about the future, but everyday things. When Harry goes on a business trip or I am away from him at night I worry about low blood sugar. He doesn’t always hear his alarms at night and so I worry about what could happen when I’m not there. I also worry when he works out (which you know is often). If I text and he doesn’t answer or if he’s gone longer then I think he should be my mind almost always goes to BS problems. I still have the regular spouse worries, like normal accidents, but his diabetes adds to that and I’m already a worrier. I think it drives him crazy.”

I’ve thought about this before, the whole “what if it was Chris and not me who had diabetes.”  I know I would nag the absolute shit out of him and would also worry a lot. That’s my role (in life?) – to worry.  And if someone other than me was living with diabetes, I’d worry incessantly about them.  Preferring to have diabetes myself isn’t heroic, but selfish because I’d worry myself into a stupor if it were anyone other than me.

Another woman, who asked to post her comments anonymously, refers to her husband’s diabetes as the third wheel. “We often call [his] diabetes the third wheel in our marriage. It’s always there and challenges our relationship often. [My husband] has a very different demeanor when he’s high, which requires a lot of my patience and to be honest- with two kids under 4, I don’t have any extra patience. So I’m not as kind and forgiving as I should be.”

Sometimes both partners have diabetes, which can add an extra layer of both understanding and of stress.  Kelley was married to someone with type 1 diabetes, and the influence on their relationship was not entirely positive.  She said, “Type 1 very much strained my marriage of 11 years to another type 1. He had hypoglycemia induced seizures along with hypo unawareness. He never wanted to wear his sensor, and it got to the point where I would refuse to leave our sons with him alone for long periods of time. I made sure both of us had insulin and supplies, I made sure our blood work was done, that alcohol wipes and tape were on the shelf where he liked them, and that there were always 2 glucagon pens in the house. I was the one that would argue with him and force feed him glucose gel or tabs, and the one that called 911 if things went too far south for my nursing skills to handle.”

“It caused a lot of resentment and frustration, and made me feel thankful for my own diabetes being easier to manage,” she continued.  “Now that we are divorced, our oldest son has taken on some of the burdens I used to shoulder, and has had a cell phone since the age of 7 to help him with all of this.”

When I was growing up, I didn’t know many other people with diabetes, but in the last 12 years, I’ve made up for lost time.  Which  means I have a lot of “diabetes friends,” which in turn produces a lot of love and a lot of worry.  I’ve never dated someone else with diabetes, but I’ve wondered what that would be like.

Kelley has strong opinions about this.  “I told myself I would never date or marry another type 1 as our marriage began to dissolve. And I have stuck to this. My new partner follows my Dexcom, makes sure I have plenty of insulin in the fridge and fruit snacks and grape glucose tabs in the night stand. I never realized how much I loved being taken care of. I have experienced both ends of the spectrum.”

But it can go either way, as with anything.  By contrast, my friends Chris and Dayle both have type 1, they are married, and they actually met through the diabetes community.  Diabetes is woven around different parts of their relationship, as Chris recounted.

“So do we talk about the dresser devoted exclusively to diabetes supplies?” Chris shared on my Facebook thread.  “The conversations about insurance? The cupcakes? The races to see who finishes their TSA patdowns first? The fact that juice boxes made it into our vows? I think we kinda stacked the deck with both of us having diabetes”

Dayle has a similar outlook, through a lens of humor.  “When Chris and I first met, I was actually dating a different pwd. But he was weird in that he actually changed his lancet for every. Single. BG test. So Christopher was a welcome change.”

Reading through people’s responses really opened my eyes to what it might be like to have diabetes on the other side of my marriage, and made me grateful for the people who live with and love someone with diabetes.  I know that when I’m frustrated with my own diabetes, it’s the steady and calming influence of my husband who keeps me from throwing my meter across the room and watching it shatter into a thousand pieces.

Which is a useful skill, since cats and kids alike might try to eat the little broken meter pieces.

Thank you to everyone who decided to share their thoughts on diabetes and marriage. Your perspectives are valued, appreciated, and comforting.

 

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.

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

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