Last night I was chatting with someone after class at Stanford (excuse me while I pick that name up off the floor) about my perception of the FDA and realized we’ve come a long way. In particular, I recalled seeing Bennett Dunlap literally sitting at the table with the FDA, talking about the accuracy of our blood glucose meters. I can’t speak for other disease communities, but seeing one of “us” there with one of “them” is something I never would have anticipated five years ago.
An organization like the FDA has to move slow. The health of the country is in their hands. When it comes to reviews, recalls, reports, and other ‘r’ words, they have to take their time to ensure they’ve done their due diligence to get things right. That approach is what makes the conversation Bennett had all the more important. An entity as massive as the FDA doesn’t pivot in an instant. They don’t turn on a dime. Change is a slow, gradual process over there. That’s why it’s important for us to applaud, encourage, and continue to support efforts that recognize and include patient communities in their processes.
Every time they look to “us”, the patient community, we have to be ready to support the mere fact that they are including us in the conversation. Feedback on open dockets, like blood glucose meter accuracy offer an excellent opportunity to say “thank you for giving us an opportunity to share what we think, let’s do this again, as often as possible.”, or something like that.
My point is, when the FDA looks to the patient community for feedback, we have to speak up. We have to speak up not only for ourselves, our loved ones, and each other – we have to speak up for other disease communities who deserve a chance to be part of the discussion. We have to speak up to reinforce that this type of action is most welcome, and should be pursued as often as possible.
To that end, here’s your next opportunity to speak up. You can go to diatribe.org/survey and help inform the FDA on what matters most to you. Continue reading
I know, I’m burning this post title awfully early in the grand timeline of my wearing an insulin pump, but enough has happened already – in just 48 hours – that I’m going for it.
I’ve had an eventful start.
- My first night on a pump, we had pizza for dinner – like you do – celebrating my ability to program a legitimate extended bolus.
- Somewhere in the process of living my life, my infusion set went wonky.
- Despite the wonk, corrections had some effect. Which (incorrectly) led me to think my pump settings were off. Because I would know things were wrong after my first-ever 20-hours wearing this thing.
- After continued blood glucose tests, failed corrections, and general frustration, I did a full site change. Infusion set, insulin cartridge, everything.
- The next 12 hours involved staring at my iPad (monitoring my Nightscout site) as the number slowly fell back into range.
Today officially marks a new era in my diabetes management.
This should be…fun? Scary? Promising? Interesting? All of the above?
Before I explain my perspective on the CGM in the Cloud movement, the technology I’m utilizing to make this part of my diabetes management, and the resources I used to complete my implementation of said technology, I figured now would be a good time to put in a bit of a primer on Dexcom, the benefits I’ve found in wearing a continuous glucose monitor, and if you’re up for it, why this cloud business might be worth your time, energy, and money. If you want to skip to the CGM in the Cloud bit and ignore the tl;dr bits, this link will skip you a few paragraphs down. I’ll try to keep the run on sentences to a minimum.
Let’s begin. Continue reading
As teased earlier this week, I’m embarking on the process of taking my Dexcom Continuous Glucose Monitoring System to the Cloud. Assuming I get all this stuff working, I’ll share my specific steps and reasons next week. But, after my initial apprehensions with all of this Cloud stuff, and later messing around with the Chromadex App (and it’s most recent update to fully integrate with NightScout) for a few weeks, I knew it was only a matter of time before I took all of this to the next level.
Wish me luck!
Image (linked) via giphy.com
Submitted on My Diabetes Secret (Linked)
The ever-infallible Wikipedia defines Stockholm syndrome as “a psychological phenomenon in which hostages express empathy and sympathy and have positive feelings toward their captors, sometimes to the point of defending and identifying with them.” When I read this submission, this was the first thing that came to mind. I know this secret isn’t exactly the same as the situation described in classic Stockholm scenarios, but there’s enough similarity to merit some kind of conversation around this.
Add this to the list of things they don’t tell you at diagnosis. With all of the time and energy spent focusing on and managing this disease, to suddenly have that taken away, that away would feel…I don’t know how that would feel. I’m sure I would feel relieved. I’m sure I would be incredibly grateful. I’m sure life would go on. But despite my efforts to not let diabetes define who I am, it is an integral part of me.
I’m not a psychologist, but I know enough smart people to pass this along to: is there a medical term for this kind of association with a condition, disease, or mentality? Diabetes isn’t necessarily a ‘hostage taker’ or a ‘captor’, even if it can feel like it at times, but can you really have the kind of emotional breakdown associated with Stockholm syndrome and a person (or persons) with an inanimate ‘captor’ like a chronic disease?
A long time ago (in blogging years) I shared some thoughts about rotating insulin injection sites. At the time I never would have predicted I would revisit this post with the perspective of a soon-to-be-insulin pumper. But that was then.
Of course, the fun part about wearing an insulin pump is there’s only one “injection” every three days. Yes, it’s more complicated than that, as there’s much more hardware associated with that single point in time. I suppose less truly is more? But with each site change comes a new opportunity to attach this insulin pump in a manner that will provide a new and foreign experience to my life with diabetes. Based on my limited experience with this thing, trying to figure out the how and where of pump tubing management will be a constant game of cat and mouse. But while I’m still writing the Saline Chronicles – read: pumping saline until my official insulin start date – I’m treating these site changes as genuine moments of experimentation and exploration. This is the time to test out various placements around my body to see what feels comfortable, what is reachable with my own arms, hands, and potentially a mirror for guidance, and what is physically impossible for one person to accomplish.
And as I have a decent number of choices for each new infusion set, experiment I shall.