My whole mind and soul is still reeling on the heels of MasterLab at FFL.
The MasterLab agenda was filled with informative and motivational speakers, the most compelling being Michael Mangianello. He was a key disturber of the AIDS movement, and played a pivotal role in putting a face on AIDS and getting policy and moneys allocated for the cause.
At the Children with Diabetes Friends for Life conference you are given a bracelet at registration. A green bracelet means you have Type 1, a Orange bracelet means you love someone with Type 1.
Michael said so many things that socked me in the chest. Completely paraphrasing: "I walk down the hall and see these little tiny children with Green bracelets. It makes me angry. There are too many green bracelets. You are too comfortable with the status quo. You have the numbers, you have the leaders, you have the means and the social networks....it's time to start a movement."
Which begs the question, is our community passionate enough to start a movement?
Are we angry enough to start a movement?
I'm afraid we might not have it in us. Yet.
I say that because I know that JDRF, the ADA and others have asked us to do simple things for our cause, and for the most part, we don't do them.
They, on occasion, have asked us to call our congressman. Did we do that? Very very few of us do. One phone call, and most of us can't even make it.
We are asked to write. We are asked to comment. Are we?
If we can't do the little things, how can we rise up and do the big? How can we shut down the White House switch board when we can't even get a handful to make the calls? What is stopping us?
I think I have a small inkling of what it may be.
During the MasterLab event there was a presentation on the Spare a Rose Campaign. It highlighted the good the DOC can do when we put our collective forces together. Spare a Rose raised money for children all around the world in developing countries who don't have access to insulin. It saved lives. Literally.
But the comment was made: "What about the children in the US? Why aren't we helping them."
And another comment, "How can $5 save a child for an entire month? It just doesn't make sense."
I think sometimes we realize that our helping is only a drop in the bucket, or in our case, a drop in the silo. We see clearly there is so much that needs to be done...surely my $5, my call, my letter won't make any real difference at all.
Which brings us back to the starfish principle. The little girl that was throwing starfishes back into the ocean after the tide went out? A gentleman, after looking down the beach at the thousands and thousands of starfish questioned why she was even bothering when she barely would make a dent...she wasn't really making a difference, right?
"Well, I just made a difference to this one." She said as she threw another starfish back in the ocean.
Small things done collectively can make giant changes in the world.
Until we start believing that nothing will change.
Don't depend on others to tell your story. Your story is unique and important. One of my favorite quotes from MasterLab is, "You know how the saying goes, if you've spoken to one diabetic, you've spoken to one diabetic."
Our uniqueness is powerful. We are letting it divide us, when really it should be used to unite us. The fact that everyone's diabetes is different is one of the reasons we need to make a fuss. The world is making blanket assumptions about Diabetes, and we're letting them.
Your voice is needed in the din. It could be yours that finally brings our voices to the surface, just like that little Who down in Whoville that made all the difference to his community.
Is there something moving in your chest yet?
Is there fire there?
If yes. Good.
If no. Find that match.
This is our time.
The movement has begun.
Thursday, July 17, 2014
Summertime means changing basal rates.
Let me get right to the point: This is how I feel about changing basal rates.
For those of you who aren’t familiar with what a basal rate is, it is the underlying insulin that is delivered via the insulin pump to my boys' bodies 24 hours a day. It delivers whether they eat or not. Whether they are high, or low…it’s always there.
We need insulin to survive because it metabolizes the sugar in our blood stream. To keep moving my boys need insulin to unlock the energy. It’s pretty cut and dry if you think about it.
Each of my three boys has four different basal rates. At different times of day, they need different amounts of basal insulin.
I used to have those rates memorized.
Yeah. I don’t anymore.
Anyhoo, summertime means a change in activity and schedules, which in turn leads to changes in basal rates. The problem is, changing one basal rate can have a domino effect and as a result, all the blood sugars can go to hell in a hand basket, fast.
This summer I’ve had the pleasure of trying to find the perfect new basal rate for all three boys.
Here’s the kicker. My boys are not the same boy. Their bodies are different.
I know. Not cool.
So I’ve had to dial J’s basal rates WAY down, and I’ve had to dial L’s basal rates WAY up. B I’ve had to tweak minimally…but I had to tweak nonetheless.
Long story short…I’m losing my hair.
It’s been a long 6 weeks, but we are almost there. Vacations required tweaking, but we have been home a couple weeks now, so I am very close to getting the boys to where they need to be.
But here’s a funny story: They start school in four weeks, and then I get to change them all again. (Spoiler alert: It's really not funny at all. That's what makes it funny.)
It’s almost like I’m willing my hair to fall out.
Thankfully, seeing numbers on the whiteboard in the hallway that for the most part start with the number 1 warms my heart so.
My reward is predictability, and we all know predictability is pretty hot.
In light of what I’ve learned lo these past 16 years, I will try not to stew about the impending changes, but rather bask in the light of good numbers while they last.
Basal changes may take my hair, but I’ll always have my smile!
Thursday, July 10, 2014
Attending the ADA Scientific Session was much like drinking from a fire hose. Information is thrown at you at lightening speed, and before your brain has time to decipher the meaning behind one fact, another comes hurling pretentiously, perhaps even unapologetically, towards you.
With my limited smarticals, I must admit, much of the terminology went over my head. I’m thankful for the people that sat near me, who were more than willing to decipher the medical lingo into laymen’s terms.
There was a wealth of information on current technology, and a lot of much deserved buzz around the Artificial Pancreas. Which begged the question: Within the confines of current technology, are we ready for the Artificial Pancreas?
As far as my swelly brain could translate, here are some of the existing roadblocks:
The current CGM’s seem to be accurate enough, more to the point, the Dexcom sensors are accurate enough. But the problem lies in the fact that Day One of a sensor is significantly less accurate than Day Two. And Day Two is less accurate than Day Three. It takes at least three days for the sensor to reach optimal accuracy for the AP device. That gap is significant considering the life of the infusion set.
The current AP Devices I’ve seen need three sites. Insulin. Glucagon. CGM. Real Estate is not just a problem for children; adults struggle to find prime set areas as well. Thankfully, there are researchers trying to find a way to integrate the sites. Medtronic just released an all-in-one sensor in Europe for its pump/CGM combo. Exciting! But how long can the set feasibly last? Maybe five days? Studies show that five days is a possibility for cannula life and insulin absorbability…but then we’re back to the it-takes-three-days-for-the-best-CGM-accuracy problem. If less than half of the wear time is prime time, what is the bonus in that? Even so, my understanding is the all-in-one Medtronic set still uses two needles, it’s just simply all done in one action, under one sticker.
There are studies being done on cannulas, to see what the best material is to use so the site can last longer. The problem is we are sending our bodily fluids up into that cannula just as much as it’s spitting insulin out. (Interesting side note: studies show that there is no difference between Humalog and Novalog in the role it plays in cannula life.)
But I think one of the biggest questions is: Are the current insulins fast enough to do the job of a working pancreas? Turns out people without diabetes release insulin into their system BEFORE they even eat. If I remember right, it was roughly 5 minutes before to a couple minutes after we eat. It is only a small percentage of the total insulin produced, but this small natural pre-bolus has shown to make a huge difference. (Which is why studies have shown pre-bolusing 15 min before is optimal.) Can algorithms be adopted to fix this? It’s possible. The algorithms used already are completely mind-boggling. Thankfully, faster acting insulins are coming down the pipeline.
Lastly is glucagon itself. I spoke with a couple friends at the Friends for Life Conference this week who were part of an AP trial. Both of them experienced stomach upset from the glucagon, and in a couple cases…it was significant. Thankfully this information has only helped the developers create more finite dosing to alleviate this issue. Also, glucagon is only stable for ONE Day. It needs to be changed out, every day. That’s a big hurdle, but one that no doubt will be figured out. I keep thinking we walked on the moon, my iPhone is practically magic…us humans can create a better glucagon. It's also important to note that some believe glucagon isn't necessary for a successful Artificial Pancreas system, so this entire paragraph may be a moot point.
Whether the technology is optimal or not, the artificial pancreas is coming, and it is quite remarkable. I don’t know if we’re going to be able to “set it and forget it” for a while, or if anyone is going to be able to afford it, but we all know that small changes allow for larger measures of freedom.
The Artificial pancreas isn’t going to bring small changes, it’s going to bring big ones.
And that, is exciting for sure.
Monday, July 7, 2014
Turns out, happiness makes you young.
Attending the Children with Diabetes Friends for Life Conference in Orlando last week brought heightened emotions, and as a result:
I laughed louder
I hugged harder
I smiled wider
I danced longer
I loved brighter
I held hands tighter
I bonded strongly
I savored the small moments
And appreciated every bite
It's easy to do such things when you're around wonderful people
Leaving behind all the “stuff” at home and simply being able to enjoy each moment is a gift that can’t be quantified.
I was surrounded by a community that has only embraced and supported me on my journey. They accept my flawed self, and shower me with love unconditionally.
We are a family. All family has diversity, and different personalities. We are all weird in our own way, but our experiences bind us. Those experiences bring out our authentic selves…and when that happens? Life is good.
#FFL2014 is one for the record books. My bracelet may be faded, but my resolve to keep embracing this community is not.
To those that made this week so joyful: Thank you.
And if you missed out? There is a smaller FFL Focusing on technology in Anaheim, California in October. Maybe I'll be there. We'll let the fates decide that one!