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Posts from the ‘Diabetes Community’ Category

Do You Hate Diabetes?

I asked some friends on Facebook if they hated diabetes, and the answers* were as varied as the folks responding:

  • “I hate it, the hassle, and the complications but I do not hate the growth amd strength I’ve achieved or the family I’ve gained because of it.”
  • “I don’t hate it as a thing but it does annoy me. At the same time I am very thankful that if I must have a problem of this type at least there are good doctors and advancing technology to help me live a normalish life.”
  • “I didn’t used to hate it when I was younger-I think because I had camp. But at this point, to be honest, I do tend to hate it.”
  • “Do I hate diabetes in general? Yes probably … I hate that it causes so much pain and suffering all over the world. I hate that people die from it and that companies exploit us living with it to make crazy profits. But do I hate living with it? Yes I dislike it very much.. and at times in rage I would say hate. But diabetes has opened so many doors for me and taught me a great appreciation for life. It’s easy for me to say that however within my environment. So who am I to judge anyone for saying that they hate it!”
  • “I don’t hate it, but it makes me tired and exasperated too often.”
  • “I don’t hate it. When I think about the ailments some of my other friends/acquaintances have, I am thankful this one isn’t a death sentence.”
  • “It’s a love/hate relationship. I wish none of us had it, or had to deal with the daily demands of it, and all the bullshit that comes with it. That’s the part I hate about it. But without it, I wouldn’t have met many of the people that make all the difference in my world, what I’m going back to school for wouldn’t be as clear, and my profession wouldn’t be as meaningful to me and (hopefully) others. I might not have as much empathy for others if I hadn’t lived my whole life with diabetes. Diabetes keeps me from being an asshole. Mostly.”
  • “I don’t hate it. Hate stirs up sadness, anger and emotions of feeling trapped. Hard to work with it if I hate it. But I wish to the depths of my core that I didn’t have to face it every day; every minute. It’s hard. It’s horrible. But it’s not hate.”
  • “I’ve always wished I didn’t have it (obviously), and I hate what it’s done to my body and how much it’s cost in both money and effort, but I’ve never hated the disease itself. It’s just part of who I am.”
  • “On some days or in certain moments, YES with a passion. However, most of the time, I’m kind of indifferent about it or it can feel like a minor annoyance or inconvenience. On rare occasions I actually feel that it gives my life more meaning.”
  • “Every damn bit of it, except for seeing how exceptional my daughter is in spite of it.”
  • “On an overall day I don’t hate it but when I stop to think about the expense or the guilt when I pig out on something or thinking about potential long term effects I hate it. I also hate it when it interrupts a full night of sleep which is does most nights but during the day I’m not walking around with hate on my mind.”
  • “No. Hating takes so much energy, emotion & attention. I already give diabetes so much of those. I don’t want to give it more.”
  • “No time for hate. To busy being SO ANNOYED.”

  • “I feel hate is too strong a word. I don’t enjoy living with it but that’s the thing… it lives with me not in place of me. It doesn’t stop me from particular events in life but it does have me consider them more. For instance I have never had an A1c lower than 8% and therefore have never been given “the go ahead to ttc ” but in saying that it won’t wholly define our choice, our timing nor the outcome.  It can be hard, tiring and frustrating but it isn’t worth hating.  I probably wouldn’t be the person I have become, without it.”
  • “Hate maybe isn’t the right word…but I certainly resent it. I get that people appreciate the community and relationships they’ve made because of diabetes, but didn’t we seek those things out as a way to cope? Just think of what we could have done if we hadn’t felt the need to find that support. I doubt I’d have a spotless medical record without diabetes, but starting with a level playing field would have been nice.”
  • “Well, I don’t hate mine, but I kind of hate other people’s. Like the fact that so many people here hate it makes me hate it. But if it were just mine, I wouldn’t be that mad about it.”
  • “I do not. I hate many things about it but, at this point, it’s all I know. If a cure were found tomorrow, I would be utterly confused.”
  • “Nope. I barely think about it. It’s just something I do. Part of my daily routine.”
  • “It is bits and pieces of the fabric of my girls. I wish terribly, fiercely, sometimes desperately that it wasn’t a part of them or anyone else. But hate … if I am honest, I can’t hate it. That emotion would tear me up. I have to focus on being strong for them. So I focus on the things that we can control and I work hard to make it as easy, ignorable and stress free as possible.”
  • “Hate is such a strong word. My feelings towards Diabetes aren’t that strong. I have stronger feelings about people who are hateful and disrespectful. Diabetes certainly takes a back burner to that. I would certainly be ‘me’ without Diabetes and it would be amazing if it were obsolete but I’m not going to put that much thought into something I cannot control.”
  • “Sometimes. But feeling constant hate would make my life a lot more stressful I think. Most of the time we co-exist with various degrees of annoyance. Sometimes I would like to punch it in the throat.”
  • “More then I could ever explain.”
  • “Nope. Met a lot of great folks in real life and online due to it. It’s something that I deal with on a low level constantly and so it doesn’t really flare up to a major pain for me. Everyone has something. I’d rather have something that is manageable, invisible to the world, and commonly understood by the general public on a basic level.”
  • “I don’t hate it. I have some semblance of control over it and at least technology and management is improving drastically all the time. I have another medical condition that is a total wild card, that while it (probably) won’t kill me, could make impossible to walk or use my hands at some point, makes me much more physically tired than diabetes, and makes me physically unable to do certain things. And has far far less chance of getting better or being cured. If I could “just” have diabetes, I’d totally do that.”
  • “Yes. I’m not going to sugarcoat that one. But I don’t hate it enough to let it cripple me/us. I don’t give anything that much power over me.”
  • “Sometimes. I hate that there are many aspects of life I can’t be spontaneous with, and that some times I plan and nothing goes to plan. I hate that I constantly think about health insurance and the role that diabetes plays in my financial stability. There’s a daily, if not hourly, fluctuation that exists when it comes to feeling positive, neutral, and negative about my diabetes.”
  • “Well, I sure as hell don’t love it!”

For me, after 31 years of type 1 diabetes, I don’t carry around a lot of anger or shame about diabetes, but I don’t harbor warm, fuzzy feelings.  I don’t hate it. I don’t like it and would get rid of it in a heartbeat if given the chance, but I don’t spend the day loathing it. (Some days, yep.  I can’t pretend to be happy about this condition.  Especially now that I’m getting older and Things are Happening that make me wonder, “Hey, is this diabetes?” or “Hey, is this just the aging process?”)

But I think that’s because it’s mine and mine alone. If one of my children had diabetes, I’d hate it seventeen different ways.

The responses from people on Facebook were so diverse, just like our community.  And I think responses could also change depending on what’s going on in the world, in their lives that day, or what result might have just stared back at them from a glucose meter. No “right way” to feel. Whatever way you feel is right.  Diabetes is part of every day, and the emotional influence is has on our lives is rarely discussed but nonetheless pervasive and constant.

But I’m glad we’re starting to talk about it.  No matter how we feel about diabetes on any given day, the community that’s bloomed around this disease continues to inform, inspire, and redefine living with diabetes.  That’s something worth loving.

 

 

 

(* All of the following bullet points are from comments on th FB thread.)

Guest Post: Until Next Time, FFL.

Leigh Fickling was at the Friends for Life event this past weekend in Falls Church, VA and this morning, she posted about the power of FFL and of the green or orange bracelets given out to attendees on her Facebook page.  I asked if I could share her post on SUM, and she was kind enough to say yes.

Take it away, Leigh!

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The armband.

I remember laying in the hospital bed with Ava almost five years ago and looking at her little arm. She was three. Her arm and wrist were full of IVs and she had on a little tiny hospital arm band. The nurses scanned that band every time they came into the room. Blood sugar checks. Scan. Insulin shots. Scan. Vitals checks. Scan. It was an armband that broke my heart. I couldn’t believe that she had been diagnosed with diabetes and couldn’t imagine how we we ever go on. I laid in that hospital bed and held her hand and never felt more alone in my life. I was suddenly in a place that was unfamiliar and I was afraid. I took a picture of our hands and have that picture burned in my memory still to this day.

I remember moving over to the big blue mom chair in our hospital room and turning to Dr. Google. I didn’t know anything about diabetes but I knew the Google would know plenty. One of the first links that appeared in my search was for Children with Diabetes. Sounded like a good hit, right? I now have a child with diabetes. I followed the link and went to the webpage and found the information that I needed. Forums. I had no idea that the Facebook groups even existed yet but found people just like me in the CWD forums. Newly diagnosed. More seasoned parents. Providers. Peers. Support. I spent hours that first night reading as many posts as I could possible read. Learning. Writing down questions. Looking at my tiny daughter and her armband. Wishing that it would all just go away.

It didn’t. And, it might not ever.

Flash forward almost five years to Friday. It was time for another armband. This time I ran to the people giving out the armbands. I couldn’t wait for the registration table to open so that I could grab my bands and put them on our wrists.

This time, the arm band gave me hope. It made me smile. It made me laugh. And, cry. Instead of being isolated in a hospital room and feeling alone, I was with several hundred other arm bands. Parents just like me. Kids just like Ava. First timers. Old timers. Grandparents. Babies. The circle of diabetes life and we were right in the middle of it bound together by green and orange armbands.

Third grade is hard. Work is hard. Life can be hard. We don’t give up but we do occasionally get down. Who wouldn’t?

I think that I underestimated the power and magic of the orange and green band. The healing power. The friendship and companionship. Speakers at the top of the field giving hope about the future and tips to make it through until we get there. Kids that have screamed and squealed and run through a convention hall with absolute delight. Hair that smells like chlorine. Lips stained with sugar free fruit punch. Hugs and hand holds and elbow bumps. Lunches with moms just like me. Alarms ringing and one hundred people clutching their bags ready to offer glucose. Personal stories that ring true with everyone. Amazing session. Supporting vendors and exhibitors. So much food complete with little accurate green carb counts.

I think that my pancreas battery was running low.

Thank you Jeff Hitchcock and Laura Billetdeaux for helping me to recharge. This weekend. These Friends for Life. This is what diabetes is all about. Thank you and the entire team for giving us armbands that mean so much at times when we need it more than ever.

As we drive back home today, our armbands are still bright and intact. As the days fade, they will lose their bright colors but will still be a reminder that we are not alone. We are in this together. In a circle.

Until next time, FFL.

  *   *  *

Leigh lives in Durham, NC and is mom to 8 year old twins, Ava and Davis. Ava was diagnosed with type 1 diabetes when she was three years old. Leigh’s day job is the Director is the Disability Management System at Duke University and Health System, and her other job is to be Ava’s pancreas.

Until next time indeed, Leigh.  Thanks for letting me share your perspectives, and for everything you do for the diabetes community.

Thirty One Years with Diabetes.

When my diabetes marked it’s 25th birthday, I wrote a bulleted of stuff I’ve learned since diagnosis.  Another handful of years later, most of that list still holds up, with a few tweaks:

Sometimes I can’t believe this is still A Thing.  That diabetes is still a thing that requires attention, work, and patience.  I used to believe in the “five more years until a cure” thing, but that promise has been folded and refolded six times over by now.  I believe that the research maybe prevent diabetes in my children, but I’m not sure it will cure it for me.  And that weirds me out.  “Forever” was always tempered by that, “Yeah, but five more years …”

And there’s a strange sense of acceptance that’s come in the last seven years, accepting that diabetes might not really be cured for me.  I find myself looking at research and technology that’s rocketing towards alleviating the burden of diabetes on people living with it and feeling awesome about that progress.  And it’s not just the Big Companies who are making a difference.  It’s the renegade ones.  And the community groups.  And the PWD empowered and inspired to make a difference.

I’m regularly impressed by families who live with diabetes.  They know how to take These Things seriously without taking those Things too seriously.  They speak in a special language of numbers and ratios and tubing lengths and labwork percentages.  They are tireless, even when they’re tired.

They inspire the absolute hell out of me.

Life is still filled with a whole bunch of colors and I’m not done coloring yet … even if it’s occasionally outside the lines.  Despite diabetes.  And because of diabetes.

But duuuuuuude, I still pretty much despise this disease.  Yep.  I can’t pretend to be above that, to have embraced it and found happiness in it.  Nope.  I do not like diabetes.  Any grace that’s borne of it doesn’t change the chokehold it’s had on my life at times.  I wish that wasn’t true, but it is true.

However.  I have gained so much from this disease.

Not just perspective, although that’s a powerful grab.  Troubles whittle themselves down a little bit when put through the mental diabetes woodchipper.  That perspective has been to my benefit as I went through my teen years (other girls were angry and upset that their jeans were a size 8 instead of a size 2 –  I was fine with a size 8 so long as my morning BG was between 80 – 140 mg/dL) and also as I managed pregnancies (stretch marks?  morning sickness?  yeah, but that healthy baby, though).

I’ve also made friendships – ones as chronic and lifelong as diabetes – where these like-pancreased connections are part of my inner circle for life.  FOR LIFE.  This connection was forged through similar circumstances but will remain intact despite distance, time, and even a cure.

But the reality of diabetes sets in more and more, especially as the same realities of Regular Life hit their stride.  I can’t pretend that it’s all easy and effortless.  This shit might look easy, but some days it’s hard.

Diabetes scares me more now that I’m older.  I read about heart attacks and other crisis events and used to think, “Damn.  They were so young.”  And now I read, thinking, “Damn.  I’m in that age range where I’m old enough for it to happen and young enough for people to think, ‘Damn, they were so young.'”

This freaks me out.  I worry about the Big Things more these days than I did before.  I try not to, but I still do.  Sometimes bedtime is when my brain hits the spin cycle and I have trouble falling asleep, picturing What Ifs and Oh Shits.

Aging and diabetes is now a thing.  Are my knees making that weird cricking sound when I run up the stairs because I’m older?  Or because of diabetes?  Or is it a combo deal?  And when you answer, can you speak up because I’m seriously having trouble hearing you.

Even after 31 years, diabetes still has days where it behaves.  And days when it doesn’t.

I can say exactly the same for myself.

Since I wrote my list at 25 years of diabetes, I’ve had another little baby bird and my life now is tied to two young people, not just one.  I have two babies to stay healthy for, two babies to annoy well into their old age.  The motivating force towards good health that my children provide cannot be properly appreciated.  They are my little world.

My hope lives in a different house now.  As I mentioned, I’m not expecting diabetes to be cured, but I’m anticipating that I may be able to ignore it altogether in the future; that data and technology will come together in a way that doesn’t make me produce insulin but also doesn’t produce worry and anxiety in the same way.  Stick on the device and it will diabetes for you.  Yes, please.  Hurry, please.

Instead, I hope for my kids.  I hope for their kids.  I hope that my mom will know with certainty that diabetes will never make my life less mine.  I hope that my husband knows I’ll be around to drive him bananas for decades to come.  I hope the community rallies and sticks together with one another, rising up against our common enemy while educating, supporting, and loving one another.  Enormous thanks to all of you for being part of a network of hearts and hopes that make this walk with diabetes easier, and less lonely.

After 31 years, I look at this body, all riddled with shouldn’ts and can’ts, and see that it should, and it can.

And it will.

 

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.

  *   *   *

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.

  *   *   *

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.

 

 

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.

  *   *   *

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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