Tag Archives: diabetes

The Long Goodbye

August 8, 2019 – 10:11 am

Today marks the 901st blog post at Happy Medium.

And it’s the last.

Probably. I mean, never say never, right?

I’ve been working up to this for over a year. I had always wanted to end this blog officially, rather than letting it just fade away. Not that there’s anything wrong with that… but I wanted to have a definite beginning and end to everything here.

A couple of years ago, I decided to publish 1,000 blog posts and call it a day. Then, a few months later, I checked to see how many I had churned out, thinking I was sitting at around 900 or so. I was only at 788. That’s when I decided that 900 would be enough. When the action group I was working with decided to roll out #IHearYou on August 1, I was perfectly happy extending to 901.

But this is it. This is part of the reorganization of my life that’s been going on for a while now. My service on Maryland’s Advisory Council on Health and Wellness will end on September 30, and at that point, I will be completely free of ongoing commitments.

I guess the best way to explain it is to remind you first that I do not work in diabetes. The diabetes community is not where I make my living. I already have a (right now) more than full-time job.

A little less than seven and a half years ago, I started a blog. Then I started attending workshops and symposia and participating in clinical trials and going to blogger summits and #DSMA Live events. I facilitated at the Diabetes UnConference, started a podcast, was a speaker before groups a few times, and I sat on the state Advisory Council on Health and Wellness these past two years. Add in HealtheVoices and HIMSS and the other one-off things that have come up now and then, and it makes for a pretty busy life outside the office.

Over the past two years, I’ve spent more than half of my paid time off from work doing everything I just mentioned above. Add in additional meetings, phone calls, inteviews, and more, and it’s a lot. Again, diabetes is not my job. But increasingly, I’ve been treating it like a job.

What that also means is that it’s been about two years since I’ve spent even a full weekend one-on-one with Maureen, let alone a full vacation. Until this winter, it had been a few years since I had been back to Ohio to see my parents, who are in their 80s. I’m fortunate enough to have good friends locally, who I haven’t spent one-on-one time with for I don’t know how long. None of that is healthy.

This is not the end of my advocacy. It’s just the end of this platform for my advocacy. I’m not looking to do nothing in diabetes… but goodness knows, I need more work/life balance.

To say that this blog has exceeded all of my wildest expectations is to damn with faint praise. I never wound up on anyone’s “best blogs” lists, but I wasn’t really shooting for that anyway. I’ve always looked at writing, and really everything I’ve been involved with here, as a gift, as an honor, as a learning experience, even if it was testing a crummy device during a clinical trial or having to take time off from my job to go to work volunteering.

What’s next? I have absolutely no idea. And for the first time in my life, I’m not afraid of that.

I’m not going away. I’ll be involved in various things here and there, advocating with DPAC and moderating #DSMA and such. You can still write in to get your Champion Athlete With Diabetes medal. After all this time, I still love to write, and I plan to continue doing so. I also loved podcasting, and it would be fun to do that again. But not here, and not as often. But then again… who knows what the future will bring?

I’d also like to look into participating in clinical trials again, if I’m not too old by now. I’d like to sign up to do another long bike ride next spring or summer. I’d like to start going back to the gym again, something I also gave up in the last year as my schedule filled up. I think it would be fun to take an acting or a cooking class, even though I have no ambitions to be an actor or a chef.

I just need time to clear my head a bit, and give myself the opportunity to choose the one or two things I’d really like to do, instead of always saying Yes to everything.

I can tell you what I won’t be doing. I won’t be racing through airports or to train stations to catch flights or trains that were scheduled too close to the beginning or end of what I was attending. I won’t be filling out forms, answering the same questions designed to show commitment to my advocacy (i.e., begging) so I can attend something I want to get into. It’s not that I’ll never do those things again. But the situation has to be right, it has to feel right for me to go there.

To those of you who have read along with me, through thick and thin, through these 901 posts, and through this long, last goodbye, Thank You. I hope we can stay in touch.

To those who have served with me on projects and on committees, and at conferences and advocacy events and everything in between… I’m afraid I can’t fully express my gratitude for accepting me as an equal, and in some cases, providing opportunities that I will never forget. I hope I’ve been able to pay it forward, and I will continue to try to do so.

To the entire diabetes community: I will never be able to thank you enough for pulling me out of my despair eight years ago and making me feel like I had worth in this world. I truly hope I can continue to compound your kindness in the future, helping others who are today in the place I was then.

After attending Kim Hislop’s memorial service in June, a few of us had dinner at her favorite restaurant in New Hampshire. I never order off of the drink menu, but after seeing this one, I had to order it, for both of the farewells I was going through and didn’t want to let go of:

It’s called The Long Goodbye.

It’s been a long time coming, and it’s certainly not easy, but it is finally time to say Goodbye.

Thank You.

By StephenS | Posted in Milestones | Also tagged , | Comments (14)

I Hear You

August 1, 2019 – 10:11 am

Many things about living with diabetes can be difficult. One of the hardest things is when we start to feel alone in our walk with this condition.

It can be when we’re at our best, when we’ve had a good day and we post something about our blood sugar playing nice. On those days, maybe we just want to ask, “Will it last?”.

Other days, nothing seems to go right, and we need a place to share our frustrations and our deepest fears.

As part of her Doctorate research, The Chronic Scholar, Heather Walker convened an action group that came away with a campaign to promote listening and support among those living with and affected by diabetes. We’re rolling it out as a group today, August 1st, using the hashtag #IHearYou.

I hope you’ll join us as we stop and take the time, first to listen, and then say, #IHearYou.

What are we trying to do with this? It’s an affirmation of what the Diabetes Online Community has been doing so well for so long.

You are not alone. Every day is not perfect, or even like any other, and it’s okay to reach out for support when you need it. It’s important that all of us recognize your contributions.

In fact, there’s an entire community made up of people with diabetes, our loved ones, health care professionals, researchers, non-profits, writers and podcasters and many others who believe in the power of sharing your story, free from judgement and stigma, with absolutely no conditions.

Yet I’ve been guilty of it myself sometimes. I keep going, with my nose to the grindstone, grinding along, and suddenly I realize I haven’t been listening the way I should.

This campaign is about that too. Taking the time to listen and acknowledge, as much as possible, everyone’s successes and triumphs, as well as your fears and frustrations.

I hope you’ll join me and the rest of the DOC and reply using the hashtag #IHearYou when someone in the community posts something meaningful, or even when someone just reaches out to you one on one to share something personal.

It’s about spreading the support and recognition that each of us works hard every day to live our best lives, with diabetes along for the ride.

We all need a safe place to share what we’re going through. We need a sounding board. We need an ear to listen. More than ever, I’m here to say to you: #IHearYou
 
 
Special thanks to Heather Walker for including me in her action group, which also included the late, great, one and only Kim Hislop
and

Bea Sparks
Kerri Sparling
Karen Graffeo

Christopher Snider
Mike Lawson
and
Bill Woods

By StephenS | Posted in Support | Also tagged | Comments (8)

Friends for Life 2019

July 24, 2019 – 10:11 am

For many of us living with diabetes, being together and supporting one another through the day-to-day grind of a chronic condition is what makes us feel like we have meaning.

The notion of that statement was on full display last week at Children With Diabetes’ 20th annual Friends for Life event in Orlando. Young and old, newbie and veteran, all took turns sharing (both lterally and figuratively) and supporting one another.

I was at Friends for Life as a member of CWD’s IT team, helping to set up projectors and sound in rooms, and getting speaker presentations ready to go. Full disclosure: Children With Diabetes paid for my accommodations so I could work on the IT team at FFL. All opinions are my own.

When I think about it, I’ve probably been to four or five out of the last six or seven of these gatherings. But… I’ve never been there as a participant. I’m always working. First it was MasterLab a couple of times, in and out in a day or two. Then I manned the DPAC booth in the exhibit hall for a couple of years. Now, IT and AV tasks.

I say this so you’ll know that my observations are from someone who didn’t attend everything, or really anything, but watched as people who did experienced their best week of the year.

This past week, I saw kids happily run from place to place with smiles on their faces, knowing that no one was going to try to stop them from what they were doing because of their diabetes.

I watched teenagers as they learned to grow into bigger, better versions of themselves, knowing that they will have support from lots of friends and family along the way.

I saw a meeting room packed with people learning about DIY looping, and then participating in a looping workshop that was so popular its time was extended, and the next session, scheduled to take place in the same room, was moved to accommodate the effort.

I saw passionate advocacy sessions led and attended by people who want so much to make a positive impact for everyone living with diabetes, and to teach and learn how to do so.

I witnessed hugs and handshakes. Side conversations and inside jokes. The deep sighs from first-timers who are just starting to rein it all in, and the knowing support from veterans who have been there, and then some.

Behind the scenes was a dedicated staff of individuals, working registration, as room captains, in Sports Central, on the IT team, and handling a number of other roles with empathy and service toward all those attending.

Altogether, it made for an outstanding week of education, networking, and social events that isn’t seen anywhere else in our community. That’s why Friends for Life is so special.

For my part, I didn’t get to spend nearly enough time with anyone newly met or that I already knew. Weeks like this have a way of just flying by. To anyone who’s time was short with me, I’m sorry… I’ll try to do better next time.

For so many kids and adults who have diabetes in their lives, Friends for Life is their safe place. Their unique environment. Their hallowed ground.

Eleanor Roosevelt once said, “The future belongs to those who believe in the beauty of their dreams”. A couple of decades ago, there was a dream, and for the 20th time, it came true, for everyone at Friends for Life Orlando.

By StephenS | Posted in Events | Also tagged , | Comments (1)

That Time of Day

July 3, 2019 – 10:11 am

I don’t know what it is about that time of day, but…

There’s something about 4:00 to 6:00 p.m.

It seems like every single day between 4 and 6, my blood sugar takes a nosedive. Doesn’t matter what I’m doing, doesn’t matter where I am. It’s a strange, strange thing.

This has been happening for years. It goes back over ten years, in fact. Some things have stayed the same during that time, but some have not.

I still work for the same company, though I’ve worked in my current office location for almost a decade. On the other hand, I don’t go to the office five days a week like I did back then. Now I work two days each week from home, and the lows happen on those days too.

On the days in the office, I have about a half mile walk from there to catch the train home. Typically, between the time I leave the office, walk to the subway, get on the train and come home, my blood sugar will drop 50 to 80 points. When I work from home, it will still drop 30 to 50 points during the same time of day.

I’m not as active as I was back when I first noticed this phenomenon. I’m still fairly active for someone my age, but let’s face it, I’m not as young as I used to be either. Who is? My blood sugar is still reacting to this time of day like I was on the spin bike for two hours straight.

Before you say it, I adjusted my pump settings long ago. Between 4:00 and 6:00, I’m getting half a unit of insulin per hour. That’s it. And most days, I could just suspend the damned thing for two hours and I’d be just fine.

One of the hardest things to explain to people who haven’t had diabetes in their lives is the constant changing nature of our endocrine systems. It’s like, they hear you when you say diabetes isn’t “set it and forget it”, but they really don’t understand that it means I need 1.6 units per hour in the morning, and less than a third of that (or less) during those two hours.

And truly, even the regular basal settings on the pump aren’t perfect for each moment of the day, because every day is different, right? Stress, no stress, exercise, diet, caffeine, alcohol, and any number of other things can affect my BGs from day to day, minute to minute.

But if I had to pick a time where my diabetes is most consistent, I’d have to say it’s during that magic time between 4:00 and 6:00 p.m.

By StephenS | Posted in Random Glucose | Also tagged | Comments (1)

What are your dreams for the future?

June 27, 2019 – 10:11 am

Earlier this week, I talked about how far closed loop technology has come in the past ten years or so. Today, I want to ask you: What’s next?

In other words, what do you think is next in diabetes care? What are you wishing was next? What do you want your world with diabetes to look like in five or ten years?

Maybe you just care about a cure and nothing else. That’s fair. Perhaps you’re interested in trying a patch pump, whenever it’s available in your country. Or maybe you want to learn more about that implantable CGM you’ve been seeing headlines about.

Would you like to see improvements in software to help you keep track of your diabetes hour by hour, day-to-day, week-to-week? Is there a nifty device you’d like to see developed?

My interests these days not only focus on diabetes, but on health care in general. I’m interested in what people living with conditions other than diabetes experience, and if there are any parallels to diabetes. I want to hear about their interactions with health care professionals, and whether there’s anything I can learn about that.

Of course, I’m interested in how we can improve access for new and existing patients, to help them get the best of what is already available. I will keep fighting for that as much as I can. Same goes for families and loved ones of those living with diabetes.

As far as everyday diabetes goes, two things:

First, I can’t wait until there’s a glucagon solution that doesn’t require a bunch of steps to go from unpackaging to injection. That’s exactly why there isn’t any glucagon in my house. The time has more than come for this. Here’s hoping it gets to approval and into our hands in the very near future.

Second, I think I’d like to see some improvements in insulin pump infusion sets. There really haven’t been changes in infusion sets in the almost ten years I’ve been pumping, and I think there’s an opportunity there for someone to make a difference. Ultimately, I’d like to see a less invasive (read: less scarring) set that could also last a little longer than today’s infusion sets do. I realize that’s a stretch… I’m just wondering if it’s possible, and if it is possible, how to get it from idea to approval.

I realize those are two non-pie-in-the-sky things, but I’d be happy if they happened anyway. And really, any improvement in diabetes drugs, technology, devices, therapy, and access are huge wins for our already too large community.

Now, let me bring it back to you again. What are your dreams, wants, needs, and desires for the future?

By StephenS | Posted in Diabetes | Also tagged , | Comments (4)
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