Monthly Archives: July 2018

Framed.

They say a picture is worth a thousand words. We should all be so lucky.

After looking at my most recent headshot (thank you Tara Polcaro), I started to think: if someone was going to write a caption under my photo, what would it say? And how would I feel about that?

Would they say I’m an advocate? I’ve been involved in a lot of diabetes advocacy over the last few years, so I think that would be okay. But… would I feel I’m the kind of advocate someone says I am? I don’t know.

Would they say I’m kind? Being kind is a big deal, especially these days. Treating someone like they matter is important. If someone would say I’m unkind, that would hurt. I would try to fix that about myself.

Would someone think I was worth knowing? Should I care if someone thought I was worth knowing? I care if you want to be friends, or if you want to talk about an issue together. If you don’t, then I guess you don’t think I’m worth knowing anyway.

It seems I have a lot more questions than answers.

I’m at a point in my life and career where I care more about substance than about recognition, more about the kind of person I am than about the accolades. I never imagined I would feel this way about things, but here I am.

I’m not one of those people who says, “Screw what anyone else thinks… it’s what I think that matters!”. Really, both opinions matter. I need to be self-examining enough to know if my heart is in the right place… vulnerable enough to ask for help when I need it… strong enough to listen when criticism is shared.

And smart enough to recognize when people are full of shit. Just thought I’d add that in.

In the end, I have to be happy with who I am; and continue working to be the kind of person I want to be in that caption.

Truth be told, I don’t really like the idea of being framed. Like my diabetes, the definition of who I am changes almost daily. I’m okay with saying my caption should change constantly. What matters is if I’m headed in the right direction, wherever that might be.

Advertisements

Like these links: T2 love, diversity, and The Social Diabetes Project.

It’s been a while since I’ve shared what I found in the Diabetes Online Community, so I thought I would make this Thursday edition of Happy Medium about some of the other great writers and advocates out there. Ready? Here we go:
 
 
First of all, I don’t give enough T2 love via my blogroll.

I need to rectify that.

So I’ve added some links to fabulous Type 2 advocates and writers this week. Here are two:
Corinna Cornejo at Type 2 Musings
Bea Sparks at The Type 2 Experience

Here are two more Type 2s, who happened to sit down and talk recently about their experience with the Freestyle Libre CGM. Here are the links to their stories:
Phyllisa at Diagnosed Not Defeated
Sue at Diabetes Ramblings

You’ll find Phyllisa and Sue’s blogs in my blogroll in the future, and I’m feeling pretty good about that.
 
 
The other thing that’s been missing from my blogroll has been diversity. So I’m going to try and do something about that too, by adding Phyllisa and these super advocates:
Ariel at Just a Little Suga’
Mila at Hangry Woman

Ariel has a great take on life, and I love reading the stories she shares. Mila’s recipes are definitely bolus worthy and drool worthy.
 
 
Finally, I can’t leave you today without sharing the link to The Social Diabetes Project: 2018. Written by Kerri Marrone Sparling, it’s an in depth look at the history of the Diabetes Online Community, the rise (and leveling off) of diabetes blogging, all of the various platforms where patients and advocates have interacted in the past and interact today, and terrific viewpoints from people who have been there for all of it. When you have a break in your schedule, or even if you don’t, this is well worth your time.
The Social Diabetes Project: 2018
 
 
That’s all for now, though that should keep you busy for a bit. I hope you’re enjoying your week. Remember… we’re always better when everyone is included.

Apparitions and Optimism.

You know, if I were to describe a condition that’s as emotionally charged as it is physically challenging, I don’t know if I could describe one that fits the bill more than diabetes.

Our blood sugar can go from to perfectly annoying to perfectly comfortable to perfectly fearful in the span of a single day. We can do nothing we’re told to do to take care of ourselves and wind up with zero complications. We can do everything we’re told to do to take care of ourselves and wind up with multiple complications. Yes, we think about these things almost daily.

So we hope.

We dream of the day when we won’t have to worry about our poorly or totally non-functioning beta cells. Parents of kids living with diabetes dream of the day when they won’t have to check to see if their child is still alive in the middle of the night.

We’ve seen a number of promising products talked about on websites, in podcasts, and over various forms of social media. But most of those products never make it in front of patients.

Many don’t make it simply because they’re bad ideas. Others don’t make it because they’re not any better than the products they’re aiming to replace. Still others fail because the laws of science just won’t allow for the inventor’s dream to become a reality.

Some of the drugs and devices we get excited about do make it to market. But then they fail anyway. Again, because they’re a bad product, they’re not much of an improvement over existing options, or the company that produces the product just can’t make enough money from it.

When I think about all of the drugs and devices that don’t make it, inside and outside of diabetes, I often wonder why anyone even keeps trying with this stuff. Why do you try to develop a new insulin if it’s not going to be anything more than another insulin? Why try to come up with a new way to measure glucose in the body when only a few ways have ever proven to be successful so far?

The diabetes landscape, and the health care landscape in general, is a continuing exercise in finding apparitions on the desert horizon and waiting to see if they turn out to be a mirage. Yet, the overwhelming majority of us continue to hope as well. Our optimism may take a hit now and then, but it still remains as part of the health care landscape.

Why is that?

Well, to begin with… in many ways, optimism is all we have. It’s okay to despair now and then, but all you’re left with at the end of despair is more despair. When you have optimism, even if your optimism takes a hit today, tomorrow you still have optimism to go on.

That’s why I think people still go out and raise money for JDRF even though more people live with Type 1 diabetes today than ever before. It’s why brave people at the U.S. Food and Drug Administration worked to make the pathway to approval for new drugs and devices better and more transparent. I even think there may be people at companies working on products because they truly care about making life better, not to mention longer, for all of us living with diabetes.

I’ll be honest… my optimism has waned a great deal in the past two years. But I’m encouraged by the fact that people around me aren’t giving up. And if they won’t stop grasping for something better, I won’t either.

Here’s hoping that today’s apparition becomes tomorrow’s validation of optimism for everyone living with diabetes.

The curse I dare not speak.

Don’t worry… I have nothing weird to share today. I’m just going to riff for a bit about something that’s been on my mind, but I don’t like sharing.

As the months and the years go by, I’m worried that insulin resistance is becoming a larger part of my life.

I’ve alluded to this before, but the basics are this: I eat less today, including less carbs, than I’ve ever eaten as an adult. Yet my insulin needs are higher than ever before.

I’ll bet almost every Person With Diabetes feels like they take too much insulin to stay alive. I certainly do. How can you not?

Well, for about six months now, my insulin needs have increased by about 20 percent, on an nearly daily basis.

When I say I’m requiring more insulin, I mean I’m adding more insulin in terms of meal boluses and correction boluses to continue to keep my glucose in a safe range. It’s just… a lot of extra insulin, nearly every day.

My A1c is still very good. But to keep my A1c where it is, I need the extra insulin, and that bothers me more than I can tell you.

It bothers me because extra insulin gives me the feeling that I’m not taking care of my diabetes well enough. If I really think about it, I am taking care of my diabetes. However, when you come to the realization that this is really happening, you start to ask why, and at that point, it’s a short walk to blaming yourself.

I’m also bothered because extra insulin indicates the possibility of extra weight gain. Hell, let’s be honest… at my age, with my ever-slowing metabolism and the fact that I can’t work out as hard as I used to, extra insulin almost certainly means weight gain. Dammit.

So, what do I do? I have to face this like I face everything else.

First, I’ve got to realize that I’m lucky: I have access to insulin and a good insurance plan through work that makes getting insulin expensive, but still possible. Next, I have to rule out any outside reasons why I might need more insulin right now.

Once I do that, I’ve got to do the best I can, so I can mitigate the effects of the extra insulin I’m using. To the extent I can anyway…

There are a lot of things we’ve got to deal with, a lot of things we have to swallow as we go through our lives with diabetes. None of them are things we look at and say, well, that’s not too bad. They all suck.

But to the extent we can make them suck as little as possible, even if they suck a lot, we can still claim the power over how these things make us feel. Especially when we feel powerless to stop them.

8 Things: Communicate wisely.

Let me just say from the outset… I doubt that many who actually need to read this will do so. Also, I’m not even going to try to top what Renza wrote, because it says so much of what I’m thinking too. Being kind is the best way to establish respect and maintain your own self-respect.

But for the sake of providing my own perspective on how to get along inside and outside of the diabetes community (and I can’t believe we’re talking about this again), here are 8 things I try to keep in mind when I engage with someone who holds a different point of view.

1. First, I almost always wait.

Why wait when your point of view is under attack and it seems like everyone else is responding and jumping into the fray?

There are lots of reasons to wait. Often, just waiting takes the air out of someone’s self-important balloon. By the time you respond, they don’t have as much energy left to disagree with you. Also, and I can’t stress this enough… waiting gives you time to form your words and consider how you’re going to respond, or if you’ll respond at all.

That doesn’t mean I’m doing nothing while I wait. It just means that I’m not responding yet. However, I may be writing a draft of what I want to say; or figuring out a strategy for responding that includes what I want to say and what I want to say to any potential responses to my initial response.

By the time I finally do respond, I almost always do so with a more measured, more powerful message.

2. But sometimes, you just have to let it go. Not everything, or everyone, deserves your response. Some opinions and the people who speak them need to exist in a vacuum all by themselves. Restraint is tough, but sometimes you have to go high when they go low, to quote Michelle Obama.

Also, I like the idea of Abraham Lincoln and the “hot letter”. When confronted with an attacker either inside or outside of government, Lincoln would sometimes write a letter detailing his exact thoughts in the moment. Often, he wouldn’t send them or even sign them. I believe they were catharsis in a way, and probably sometimes, a first draft of a more tactful response to a difficult situation. I’ve done this too.

3. Try to address the issue, not the person. When I was a retail manager, I used to tell my employees that despite what we’re told, the customer is not always right… but the customer should never be made to feel like it’s their fault they’re wrong. Even if it is.

As much as I can separate the issue from the person expressing their opinion, I try to do that. Hurt feelings over being wrong about an issue is something people can get over. Hurt feelings over personal attacks are a much bigger hurdle.

4. Find the dividing line. There’s a dividing line somewhere, between anger or disappointment, and just being bitter. I’m okay with acknowledging someone’s anger over an issue, or disappointment at being left out of a discussion. But if you’re bitter? You own that all by yourself pal, and you’ll have to live with it, because I’m not going to validate your bitterness by responding to it.

Sometimes it can be difficult to find that dividing line I mentioned, but the more you can separate anger or disappointment from bitterness, the more likely it is that you’ll wind up maintaining a decent amount of personal space between you and your critic. And you’ll be more likely to maintain the respect of and from a critic, as long as they don’t cross that line into bitterness.

A few other very important points I’d like to make:

5. Make sure you’re right. If you’re calling out a journalist for using the word “gadget” in a story on medical devices, you’d better make sure you haven’t used the same word in the same context on your blog or in Facebook posts. Nothing kills your argument faster than contradicting yourself.

6. It’s okay to let someone have the last word. I’ve often stated my point of view and told my counterpart that I will let them have the last word. That does two things: 1) It closes the conversation after they make their last point; and 2) It really makes them think hard about the last point they’re going to make, because they know I’m not paying attention after that.

Especially when they’re being bitter, sometimes the best way to handle a detractor is by letting them cry themselves to sleep, so to speak. The more they display bitterness, the more my lack of reaction shines a light on it.

7. Sometimes, it’s better to handle things personally. In other words, through an e-mail, or even one on one at a conference or meeting. That can be more difficult because it doesn’t offer the false high that comes with a swift social media response. Regardless, public displays of outrage are not always the best way to get your point across.

8. Forever is a long time. It’s forever, man. I have had difficult communications with individuals, even where they were being bitter, and ended them in ways that leaves the door open for reconciliation. Now we can at least have a decent conversation online again, even if I don’t agree with their point of view.

Say what you want to say. But if you’re going to set something on fire, make sure it’s worth torching. I speak from experience, and trust me, you don’t want to have to cross back over a bridge you’ve already burned.
 
 
I hope these are useful pointers for you as you continue to navigate the information superhighway. Remember that people are on the other end of what you post. People with feelings, with jobs they’d like to keep, with families to feed, and with reputations they’d like to keep intact.

Aren’t you the same?

%d bloggers like this: