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Posts tagged ‘type 2 diabetes’

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.)

Look to the Edges.

I saw this thread on Twitter last night from Dr. Jake Kushner, Chief of Pediatric Diabetes & Endo, BCM/Texas Children’s Hospital in response to a person with type 1 diabetes living without health insurance. Here is her account of what that experience is like.

You can throw whatever stones you’d like about people needing to pull themselves up by the boot straps or whatever you want to use to explain their perceived inability to fix their dire situation, but I read her words and they were overwhelming. I was diagnosed with type 1 diabetes at the age of seven and right away, I was on my parents’ insurance policy and they fought the access battles for me. I stayed on their insurance through college and started my “real job” two days after I graduated, on my own insurance policy and finally understanding what it was like to ensure I was insured. Now, I have the support of my family and access to insurance coverage that, for the time being, covers what I need and also a fair amount of what I want.

I am lucky. I know this. I appreciate this more now, in these strange political times, than I ever have before.

Dr. Kushner mentioned “the edges” of the diabetes community, where people are crowdsourcing funding for their insulin or forgoing other bills in order to afford their supplies. Where people are struggling. Where people are dying. These stories aren’t often heard. But they need to be. Reading Ana’s story didn’t open my eyes to the fact that these stories exist, but more than they need to be told and amplified and heard.

They need to be heard.

“We need to look to the edges of our T1D community, away from the center. Who is having trouble? Who struggles to get care? How can we help?”

If you feel as though you are on “the edges” that Dr. Kushner mentioned, and you have a story about diabetes, access, and what real life is like with this disease that needs to be heard, please share it. If you’d like to share it here, please email me. I would really, really like to share this platform for stories that make a difference, and those stories are so much bigger than mine alone. Our collective is powerful.

But whatever you do, please don’t stay quiet. We need to hear your stories.

Every single person with diabetes counts.

Bright Spots & Landmines: An Interview with Adam Brown

Adam Brown has written a new – TERRIFIC – book for the diabetes community, full of the same brilliant, actionable advice that we’ve come to happily expect from his diaTribe columns.  His book, Bright Spots & Landmines, is billed as “the diabetes guide I wish someone had handed me,” and that sentiment is absolutely correct.  This book is a powerful tool that people living with diabetes can pour through and make their own, with moments of reflection and inspiration interspersed among research, recipes, and amazing graphic design.  
Bright Spots & Landmines by Adam Brown
Kerri: What inspired you to write Bright Spots & Landmines?

Adam:  When I started writing my diaTribe column (Adam’s Corner) four years ago, I never would have guessed that more than half a million people would read it! I’ve received hundreds of emails and comments sharing gratitude and kindness, which is what motivated me to do something loftier with Bright Spots & Landmines. Each Adam’s Corner column stands alone, so I wanted this book to be a single guide that distills all the most helpful diabetes tips I’ve learned in four areas: food, mindset, exercise, and sleep.

Kerri: What makes Bright Spots & Landmines different from what’s already out there? 

Adam:  I agonized over this question before writing this book – I wanted to make sure Bright Spots & Landmines would add value!

From the beginning, I had two major goals with this project: (i) write an extremely actionable book that anyone with diabetes can use to improve some aspect of his/her life immediately; and (ii) give it away at as low of a price as possible! Based on the early reviews and the free/name-your-own-price PDF download, I’m so excited about the outcomes. A few other things come to mind:

Bright Spots & Landmines is written from a person-with-diabetes perspective and based on more than 10,000 hours writing professionally about diabetes, over 50,000 hours of personal learning from CGM, and everything I’ve taken away from hundreds of diabetes conferences and leading thinkers.

The book focuses on food, mindset, exercise, and sleep, which are not often addressed in the same actionable diabetes guide.

Bright Spots & Landmines went through an extensive feedback process, with a combined 500+ years of diabetes experience between all the reviewers – yourself included!

Last (and perhaps most important), my girlfriend, Priscilla Leung, did all the wonderful illustrations and graphics in the book – these really make the writing come to life. I’m as proud of how it looks as I am of the words!

Kerri: How do you want readers to feel after reading your book?

Adam:  Uplifted, positive, and ready to try some new things and experiment! I hope people leave Bright Spots & Landmines with tangible actions and nuggets they can use to improve their life with diabetes – whether it’s a recipe I eat, a quote I like, or an answer to question that the book poses to them.

I hope this book also reminds readers that we all have moments of enormous diabetes frustration, self-sabotaging food decisions, negative thoughts and questions, busy days where exercise is hard to fit in, and nights without enough sleep. Bright Spots & Landmines shares my toolkit for navigating the choppy, unpredictable waters of living with diabetes. I hope it puts some wind in readers’ sails.

Adam Brown, author of Bright Spots & Landmines

Kerri: Is Bright Spots & Landmines made up of rules for living well with diabetes, or are these suggestions for people to implement in their own lives?

Adam:  Awesome question! This is a book filled with things that have made an enormous difference in my life with diabetes. By sharing them, I hope readers will glean tips they can try or adapt to fit their needs.

For instance, chia pudding is one that has been fascinating to follow. Some readers make it exactly like I do and love it! Others have tinkered with the recipe to fit their needs. And for others, it’s not a fit. I expect this variance with all 43 Bright Spots and 16 Landmines in the book – some will resonate, some will need to be adapted, and some won’t apply. This is why each chapter – food, mindset, exercise, and sleep – concludes with Bright Spots & Landmines questions so readers can identify what works for them.

Kerri: Is this a book you would want to give newly diagnosed PWD? Long-timers? Caregivers? Is there something for each group in this book?

Adam:  All of the above – and I don’t say that lightly. Every one of these groups read drafts of the book. A mom of a newly diagnosed son read Bright Spots & Landmines, as did a woman with over 50 years living with diabetes. Other readers fell in between (see testimonials and Amazon reviews). I even had some people with prediabetes read the book and find it useful!

Kerri: What was your favorite part to write?

Adam:  I love the Mindset chapter most of all, even though it comes second in the book. (Of course, Food had to be first in a diabetes book.) The right Mindset is like rocket fuel for living better with diabetes – it underlies everything and can provide such a boost, even on the toughest days. This chapter shares lots of tips and tricks related to perfectionism, motivation, stress, goal setting, hacking my brain and habits, and beyond. I’m a voracious readers of psychology and self-help, which is probably why I had so much to say in this chapter.

Kerri: What was the most challenging portion of this book for you to tackle?

Adam:  I struggled a lot with the title. We went through many iterations, including “Diabetes Bright Spots & Landmines” (too long), “Solving Diabetes” (a bit too presumptuous), and the original (read: not great) title, “Make Diabetes Awesome.” Probably the worst title in the original brainstorm was, “Diabetes should be less awful and more awesome.” Haha! I’m so happy about the final title:subtitle combination, since it really illustrates the book’s framework and why I wrote it in the first place.

I also spent an enormous amount of time trying to figure out how to make the book as low cost as possible, but still look amazing. I originally wanted full color interior printing, but this made the book twice as expensive in paperback. I wasn’t willing to accept that tradeoff. I love the current model of a name-your-own price PDF download in full color, a paperback on Amazon for under $7 (the black-and-white interior still looks really good), and a Kindle version for $1.99.

Funnily enough, the writing process was the easiest part, though getting feedback on the book was always scary. It’s never easy to show your work to other people.

Kerri: What’s next, now that the book is live?

Adam:  For now, I’m laser focused on finding every possible avenue to get this book into people’s hands – whether that’s print copies or free digital versions.  And we will certainly do follow-up Adam’s Corner articles that talk about different pieces of the book.I’d also love to do an audio version, video snippets of different Bright Spots & Landmines, weekly Facebook Live Q&As with readers, and perhaps translation into other languages. But whew… one thing at a time! If you have any ideas you’d like to see, please let me know at brightspots@diaTribe.org!

Kerri: And how can people find more of your writing?

Adam:  Adam’s Corner is here on diaTribe.org, diaTribe’s Facebook page is here, and diaTribe’s twitter is here (@diaTribenews), and my twitter is here (@asbrown1).

Kerri:  Thanks so much for chatting, Adam.  Also, you adopted a dog? Awesome!  What kind?

Adam:  A mini schnauzer mix! I talk about him in the introduction and the exercise chapter 😃 A dog is an incredible Mindset and Exercise Bright Spot, all in one package! I’m a huge convert, despite my skepticism when Priscilla wanted to adopt. Definitely one of the best life decisions we’ve made in the past year.

  *   *   *

Thank you , Adam, for taking the time to talk and also for creating such a powerful resource for the diabetes community.  (And I have a soft spot for Adam because he has never yelled at me, despite my occasionally being spotty back in the day on getting my diaTribe columns to him on time.  To that same end, look for a reboot of the SUM Musings column over at diaTribe in the coming weeks!)  

Adam is patient, ridiculously well-informed, and when it comes to bright spots in the diabetes community, don’t look directly at Adam or you may burn your eyes.  Congratulations again on the book launch!!!  

DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The 5Calls.org website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.

 

“Don’t you all know each other?”

A few weeks ago, we were in Venice and I almost walked right into the canal because I saw a lady with an insulin pump on her waist and a CGM sensor on her arm, speaking Italian to the shopkeeper and casually wearing her pancreas on her hip.

The flurried rush of emotions – excitement, understanding, the urge to shout “one of us!” – flooded me.  I grabbed my husband’s arm and said, “Hey DID YOU SEE HER PUMP?!” and he was all, “No, where?” and I pointed my finger while trying to make it look like I was itching my nose.

And my daughter said, “Yeah mom, I saw her!  And her pump! Do you know her? Don’t you all know each other?”

(You know, I wish we did.)

And even though we don’t all know one another yet, we can contribute to the growth and collective power of our diabetes community by participating in Diabetes Blog Week.  Sign-up details are on Karen’s blog – this is the 8th year! – and topics will be provided throughout the week.  And if you’re not into running a blog, you’re welcome to guest post here on some of the topics, if you’d like.  (Email me!  kerri (at) sixuntilme  (dot) com. )  Also, you can shape-shift the topics to fit into 140 characters on Twitter, or through Instagram, or other social sharing platforms.  Don’t let the “blog” in blog week keep you from sharing your story.  All voices are welcomed!

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