Thursday, July 24, 2014

Superman

This post isn't about diabetes, just so you know.

I met you in the summer of 2007. I fed you, and you were mine.  Jason says it was like feeding a stray puppy. 

You were a big brother to my boys, and a little brother to my husband.  I loved our twisted "family tree" and how you called the boys "brophews" and they called you Uncle Bubba.  I know you had lots of "moms" and I'm so proud I was one of them.


You were a role model for all the other guards.  They looked up to you, respected and loved you.


And sometimes you were not such a great role model.




You freaked me out when you wore the sunglasses contacts.  I loved seeing your blue eyes.



I loved your deep voice, deeper than it seemed it should be.  And the way you sang just a little tiny bit off key.



And for some reason you loved putting on tiny clothes from the lost and found.



In most crowds, you were the biggest one there.  I think you cried a little bit when Seth passed you up and you became the runt of my litter.



Cancer came back.  We all got scared.  The surgery got it all, but the chemo after was rough.  I hated taking you the couple of times I did.  Hated watching them put that poison in your body. I couldn't even feed you anything that made you feel better. But we all hoped that poison would kill the cancer before the cancer took you from us.  And it did, for a while.



And we had some more fun times.



Then it came back again. We all thought/hoped you would beat it again.  I never gave up on you and held out for a miracle until the very end.  And at the end, we were there. I hope you felt the love as you took your last breath.

How do I heal the hole in my heart?  I will never be the same again.  But I would do it all over again, even knowing I'd lose you.  I could certainly do without this pain, but I wouldn't have wanted to miss the dance of having you in my life.  I'll love you always, and you'll always be my Superman.



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Tuesday, July 22, 2014

Show Me Your Pump

Most of the time, Seth and Jason don't care about their Dexcom sensor showing.  In the summer, they both work as lifeguards (Jason is a pool manager in the summer) so their sensor is pretty much always showing.  The questions are pretty much nonstop at the pool, people asking what it is.  Neither of them really mind telling people what it is, otherwise they would wear it under their swimsuit somewhere.  But they do sometimes get tired of answering the same question over and over.  Depending on who asks and how, the answer may be humorous. (I always make them answer sincere questions with the real answer.  Buzzkill, I know.)

Enter Miss Idaho Sierra Sandison.  She wore her insulin pump ON STAGE during the SWIMSUIT portion of the competition.  Well, she actually wore it during the entire thing, but the swimsuit competition was the only time it was really visible.  In a place where appearance is pretty much everything, this brave young lady wore a visible medical device.  Wow!  I am just blown away by her bravery.  She also started a hashtag on social media, #showmeyourpump.  It's kinda gone crazy, with people posting pictures not only of their pumps, but also of other medical devices.  She is empowering people!  How cool is that???


Anyway, back to my guys.  Their reach is nowhere near that of Miss Idaho, but I have no doubt they are influencing someone with their openness.  Medical devices of all kinds are not easy to wear, and even less easy to wear in the open.  But these devices are what make a more normal life possible. It takes brave people that aren't afraid to show those devices to make them more visible/acceptable to the public.  Brave public figures like Sierra Sandison, and all the regular people that just wear their devices in everyday life like Jason and Seth.


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Sunday, July 20, 2014

Closing the Loop

These has been lots of talk recently about the closed-loop (artificial and bionic pancreas) trials.  Many of my awesome friends have asked me about it, posted about it, etc.  It is a very exciting development that I have been following for a while.  I do have some concerns, things that will need to be addressed before it becomes available to all type 1s. 

First, the artificial and bionic pancreas both require 3 sites on the body.  2 pump sites, similar to the one shown in the first picture, and 1 CGM (Dexcom) sensor, like the second picture.


Having even one thing attached to the body can be a hassle, much less 3.  The pump sites will both be attached to plastic tubing.  Each one is attached to a separate pump. One pump delivers insulin, the other delivers glucagon. Pump sites can cause scar tissue.  Areas with scar tissue can no longer be used, at least not for a period of time to see if they heal. This is especially a concern for children, who have much less surface area for inserting all these devices. All 3 devices are connected to a smartphone that basically controls the insulin and glucagon delivery.

Another issue is that glucagon is not a stable solution.  At the present time, it must be replaced daily in the glucagon pump.  That would be a huge expense in regular use.  Researchers are working on stable forms of glucagon, so hopefully this issue will be solved soon.

At present, CGM (Dexcom) technology is not advanced enough to make dosing decisions.  We use Dexcom as a tool to view trends, but never inject insulin based on the number Dex gives.  A fingerstick test on a blood glucose meter is needed to confirm.  In closed-loop systems, the number from Dex is used for the system to make the decision.  A more accurate Dexcom is currently being worked on, from what I understand.  Until Dex is reliable enough for dosing insulin it really can't be used outside of clinical trials.

Insurance companies are also putting language into their policies to specifically exclude closed-loop systems.  Without insurance coverage, most people will not be able to afford the systems when they do become available.  Some companies do not cover pumps and CGMs, either. There are still many people that do not have the option to use the current technology, much less what is on the horizon.

One important thing to keep in mind...the closed-loop systems are in trials right now.  They have not been approved yet.  The people that are doing the trials are amazing.  They are volunteering their bodies to advance the technologies that will hopefully improve the lives of all those with type 1 diabetes.  Heros in my book, especially the children that have just recently been approved for these trials. Heros like Elise, who just started the bionic pancreas trial.  At 6, she is the youngest person to trial a closed-loop system.  

Don't misunderstand me. These clinical trials are hugely important. This will be life-changing for people with type 1 diabetes.  We're just not quite as far along as I think the media sometimes implies.  There are still some big obstacles to overcome before we get there. I am so thankful for the people that are working tirelessly to make this happen.  We'll have an even better tool to KDA. Until there's a cure.

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