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Posts from the ‘Psychosocial Support’ Category

A Beautiful Attempt.

Right now, outcomes are not reflecting the things I’m doing to manage diabetes every day.  And that pisses me off.

I need to remind myself that every attempt at keeping diabetes in line is worth it.  Even if the results haven’t quite caught up with the efforts.

Another #dayofdiabetes.

Every day (at least for me, since 1986) has been a day of diabetes, but now there’s a hashtag to go with it, so I guess that’s cool?  (Yes, yes it is.)

Today, I’m documenting what a day in the life of this type 1 diabetic is like, one Tweet at a time.  If you’re on Twitter, you can follow the #dayofdiabetes hashtag to see a dozen different day-long perspectives on what life with diabetes includes.  And if you’d like to join in, you don’t have to limit yourself to Twitter.  Log your day on Facebook, in a blog post, on Instagram, or whatever online sharing model moves you.  Track using the #dayofdiabetes hashtag, and join the conversation!

 

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

Even Small Medical Advances Can Mean Big Jumps in Quality of Life.

I came home after two days away to a flurry of discussion about Sunday’s New York Times article, “Even Small Medical Advances Can Mean Big Jumps in Bills.”

My knee-jerk response was to be thrilled that type 1 diabetes received above-the-fold coverage in the New York Times.  Reading the profile of and quotes from Catherine Hayley felt like a fair assessment of life with type 1 diabetes, and painted Catherine not as someone who suffered from anything, but who worked hard to power through a whole lot.  I wished the columnist had been more focused in her discussion (Is this article about health system economics?  The cost of treating type 1 diabetes?  The complications associated with diabetes as a whole?) but I am not the best person to discuss a lack of focus because … (shiny thing)

That said, the quote that really bothered me was right at the beginning:

“But as diabetics live longer, healthier lives and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.”

Really?  It’s that simple?  I wish I was being dramatic, but every, single night before I go to sleep, I think about whether or not I’ll wake up in the morning.  It’s not a thought I belabor, and at this point, I sometimes debate the possibility almost pragmatically, calculating insulin on board and exercise I’ve done recently, thinking about my last A1C or EKG, thinking about how 27+ years of type 1 diabetes has affected my body.

I wish financial worries were replacing others, but instead, I worry about diabetes-related complications in addition to cost of treatment.  However, the trick is that these advanced treatments will allow me to worry about diabetes into proper old age, because I will live longer, and better, with access to this technology.

Devices like an insulin pump, which can precision dose my insulin and help efficiently calculate and track insulin use throughout the day, help me fall asleep with more peace of mind.  Wearing a Dexcom, which alarms when my blood sugars falls out of my pre-established comfort zone, helps me fall asleep with more peace of mind.  Peace of mind, when living with a complicated chronic illness, matters.  These are not devices I wear because they’re “cool” or “fun.”  I don’t care what colors they come in or whether or not they resemble an iAnything – I want it to work and work well.  I turn to technology to help best manage my diabetes because my pancreas stopped making insulin almost three decades ago, and these advances in treatment have improved my quality of life immeasurably in some ways (emotional health) and very measurably in others (better blood sugar control).

One other quote was particularly frustrating, not because it was the study that was referenced, but because the study itself is over 20 years old:

“But that all changed after a landmark study in 1992 showed that patients did better if they maintained very tight control — keeping their blood sugar within a nearly normal range by checking it frequently and taking multiple insulin shots a day.”

Where is today’s modern DCCT?  Where is the study that’s looking at the influence of insulin pumps, CGM, and insulin analogs on patient outcomes?  (Please tell me this study exists – I hope it does!)  We’re talking about modern-day diabetes treatments and lining these discussions with studies involving somewhat out-dated treatments.  I’ve seen the benefits of pumping and CGM use on my personal diabetes management, and I can only hope that the overall PWD population sees positive outcomes in their management when given access to these technologies.

The discussion I’ve seen across the DOC and the web at-large has been enlightening, and I’m really glad to see and hear people talking about diabetes with such excitement and passion.  Diverse opinions should be shared, and heard.  Progress is important.  Innovation matters.  And in my opinion, modern-day diabetes should be treated with modern-day technologies.

 


 

[hi, there are my disclosures]

 

 

The Art of Compliance.

Is the word “compliance” frightfully out-dated? Or misunderstood? This month, “compliance” is the word under investigation over at diaTribe, with some crowd-sourced input from fellow people with diabetes, stemming from the Facebook question, “As people with diabetes, how does the word ‘compliance’ strike you? (Positively? Negatively? Apathetically?)”

“As with everything related to diabetes, your mileage may vary, and the concept of “compliance” is no exception. For me, it can feel like the end-all, be-all assessment of my diabetes, like an A1c result. But even if the word itself stirs up some negative feelings, it does serve to remind me that the to-do list of diabetes is never fully checked-off, and while there are plenty of reasons to feel good about my efforts, there is always something I can do to improve. The quest towards “better” remains constant, and I have to remind myself that a label doesn’t matter as much as my actions, and their outcomes.”

Check out the full article over at diaTribe, and if you want to weigh in with your opinion, I’d love to hear it.

 

What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

YCDT: Encouraging Independence.

There’s an excellent, and inspiring, new You Can Do This video centered on parents helping their children with diabetes gain independence.

From the YCDT site:  “Independence in any aspect of a teen’s life can be a double-edged sword for parents – while parents want their children to be capable, that same capability is the gateway to their separation and evolution into adulthood. Independence can be a scary concept as it means children are ready to try their wings. Flying on their own means that sometimes they will fall and make mistakes, but most importantly it means that they are growing up.”

Check it out, and if you are ready to submit your own You Can Do This video, submission details are here.

 

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