It was something small; one point among many in his speech. My memory won't allow me to quote him verbatim, but I think I can get fairly close.
"Living with diabetes is much tougher now, in some ways, than it ever has been. In the years before modern insulins and glucose testing, you took one, maybe two shots a day, and that was it. Now you have blood tests and insulin pumps and CGM data serving as constant reminders of the disease. It's something you're always thinking about. Something you can't escape from analyzing." - Kim, channeling Mr. BrewerHe made sure to qualify that point by saying that technology is certainly a good thing - many of us are in far better health than we'd be if this were, say, 1962. The tools we have now enable us to be healthier than any past generations of diabetics ever had a chance at. We can be grateful, so grateful, for that.
But the other side of that is its cost. The mental cost.
A CGM doesn't let you forget. It buzzes; it beeps. It needs a calibration. It tells you you're dropping. It reminds you you're still above 200.
All of the correction boluses, the precise insulin measurements, the tailoring of basal rates, the tightened glycemic goals, the post-prandial levels, the aim for those pretty A1C numbers... they help and hurt, all at once.
Mr. Brewer emphasized that one of JDRF's goals is to lessen that mental cost for those of us with diabetes. He, too, would like to see the day where people with diabetes don't have that relentless reminder at all hours of every day. Where we can, using the technology available now and into the future, go back to not really thinking about it. Where we can take all of the time and energy we've put into our diabetes care, and focus that into another worthy cause.
This is the kind of thing that helped me decide that JDRF's new CEO "totally gets it".
And it gives me hope.
It's not the little things about diabetes self-care that are so challenging. It's the sum of the parts. Is there any other chronic condition that's so strongly as much about the mental care as well as the physical?
ReplyDeleteDuring my JDRFGovDay rounds, that was my big point for members of Congress: Please, help us automate the treatment of this disease so that all of us living with diabetes can use new-found "free" time to be productive people! Yes, taking care of my health is important and helping others care for theirs is, too. But I'd much rather put our time, energy, and money toward other pursuits!
PS: Hmmm. That cgm line does not look like a cupcake was involved.
Kelly - it involved mac and cheese. I think if you squint and sort of look sideways, the right side of that graph could be mistaken for a macaroni noodle.
ReplyDeleteSort of.
Very true...I don't think people realize all the mental energy that goes into managing diabetes every single day. This is something I'm struggling with lately and just wrote a post about how tired I am. I'm glad the new CEO is someone who gets it!
ReplyDeleteThe mental cost is real, but so is the cost in dollars. There is a money-is-no-object attitude among diabetes doctors and many patients, yet many people struggle to get basic coverage for such basics as sufficient numbers of test strips each month, and fancy devices like CGMS and pumps are all but unattainable. JDRF has not adequately addressed that issue of cost IMHO.
ReplyDeleteKim, I have been a lurker on your blog for awhile now, but I'm happy to come out of lurker-dom and comment on this blog post that I absolutely LOVED. This is the reason why I wait a week in between CGM site changes- the constant reminder that something is "wrong"- you're dropping, you're high, you're rising, ahh! It's too much heartbreak to take constantly sometimes, no matter the fabulous information the CGM provides. Everytime I look at that stupid CGM I'm thinking "when is the next possible moment that I can acheive a no-hitter?" and then everytime I go above/below, it's a failure.
ReplyDeleteThe information is great, but sometimes it sets us up for emotional failure.
Anyway, I love your blog and your advocacy and will continue to read to mitigate the emotional blows of D-technology :)
You're awesome, Kim. I was actually going to write that over the weekend, but you hit it perfectly! His words range true with me at my Endo's office the other day, as we were discussing the pros and cons of CGM and generally online connections - and how it all plays into burn out. So very true, that it can be overwhelming and sometimes we just need that mental break. I'm equally inspired about Mr. Brewer's understanding on this. Thanks for your post, Kim!
ReplyDeleteJessica - it's so very nice to meet you! Thanks for taking the plunge, and feel free to do so more often. :)
ReplyDeleteMike - I hope you still write that post! Even the same topic gets a new twist from different voices.
Couldn't agree more. The more technical it gets the more mentally engaging it gets. Both good and bad, a paradox. Great Post!
ReplyDeleteYes... While I don't personally have Type 1, the mental energy of it is all up to me right now. And it never lets you forget. We just went to a see Gnomeo and Juliet and the cgm beeped thru the entire movie. (I can't ever seem to bolus right for movie popcorn). It makes me want to hop up and down and scream, "Let the kid enjoy a freakin' movie! Can't you lay off for an hour?!?"
ReplyDeleteListening to him was so encouraging. I am very hopeful!
Hey - I have been a lurker and am finally posting!!! I totally agree and I think it's one of the biggest reasons my 8 year old gal, T1, doesn't want a CGM. She keeps saying 'I don't want to SEE it ALL THE TIME' and I gotta kind of respect that. She will have T1 the rest of her life and be looking at numbers. Maybe she will come around to a CGM later in life, but she needs to be ready emotionally for it.
ReplyDeleteGreat post and I do think Jeffrey Brewer gets it. I am thrilled he is at the helm.
This was an excellent post, Kim. You make some wonderful points. I was diagnosed in 1972, and didn't start pumping until 2007, and CGM-ing until 2008. I really love my CGM, but truly I never thought about Type I diabetes as much as I do now.
ReplyDeleteScott makes an excellent point about the COST of all this stuff. I now feel i can't live without my CGM, and my current insurance pays for it. What if the insurance coverage changes, though? JDRF needs to find out why these medical device companies are allowed to charge so much, no matter what the economic climate.
Why hello, fellow lurker Penny! :) Nice to meet you, too!
ReplyDeleteWow! This is a great post!! Love how in the DOC, sometimes others can put into words things that you have thought, but never connected the dots. Thanks!! :)
ReplyDeleteHelps and hurts all at the same time. That is so true.
ReplyDelete