Here’s the conclusion of the Artificial Pancreas Trial blog on the JDRF page. As I have said before, these trials need volunteers and people to spread the word. I was asked by a relative last night, if I got “the” pancreas. She thought my participating in this trial was a pancreas replacement of some sort… like surgically. People beyond the T1D community need information. I ask you to please help me spread the word if you too want the AP to become a reality. Get other people to like the JDRF Facebook page too. Every once in a while, people get inspired by something they read, something that catches their eye, a conversation. Let this be part of a continuing conversation. Good conversation. Keep it going beyond us in the T1D community. Thanks.
I have another post over at A Sweet Life today. I wish I’d done a better job editing but it was a bit (totally and completely) rushed. I am still in the Artificial Pancreas clinical trial and there continues to be lots more information to share. The more people who know about this program, the better. The more people willing to participate, the better. And the more people who get involved in fundraising for crucial research, the better. My experience is proof of a JDRF grant at work and testament to the incredible and honorable dedication of teams at both Mt. Sinai New York City and the University of Virginia.
2 other things:
1. This is my DiAs screen from last night. The loop is CLOSED in this photo and I am supposed to be asleep (and a cool view of the Empire State Building):
2. I was briefly reunited with my dog today. He smells less than superb and I don’t care:
I, along with 4 other people affected by T1D from the JDRF NYC chapter, met with representatives from Senator Chuck Schumer’s office 2 weeks ago (yes I did almost autocorrect his name to “Chick Schumer” recently, caught it in time, and then laughed so had alone in an elevator that i partially slid down the wall). We were there to discuss S. 2689 (Medicare coverage of Continuous Glucose Monitors). I left hopeful and with finger’s crossed.
On Thursday night while in route to Artificial Pancreas stuff (Wow, yes, wow), I received an email that Senator Schumer will co-sponsor the bill. We need this to happen folks. Many people (and I’m sorry to say fellow T1Ds) don’t see how important this is. Let me reiterate why this is important to support this and help fight, even if you are nowhere near 65 years old and think this doesn’t affect you.
1. If you support the Artificial Pancreas Program, a CGM is an integral part of this program. Let me spell it out: to Close he Loop, you need a CGM. If Medicare does not support and cover CGMs, whatever the device is that becomes the Artificial Pancreas will have THAT much tougher of a time to get in OUR hands. CGM coverage by Medicare is a hurdle we can knock out of the way to get us closer to the availability of the Artificial Pancreas.
2. Health insurance companies look to Medicare. If Medicare does NOT cover CGMs, it makes CGMs “appear” unnecessary. My CGM is a savior to me. If yours a savior to you? A savior to someone you love? A savior to someone you mildly like? Then go HERE and support THIS.
Now here is the BIG part… TALK this up! Post it on Twitter, FaceBook, Instagram and whatever other social Media things people use these days. Reach out to people BEYOND the diabetes community! REACH OUT.
Did you go to High School? Reach out to your High school alumni. Do you have siblings? Get them to sign. Friend of friends? Yeah, grab them too. This doesn’t cost money. it just takes a few minutes.
Next up… Artificial Pancreas stuff. The photo is pretty ridiculous (why are we in a magnifying glass? Well it’s appropriate that I’m laughing, no?) but here’s the skinny from Brian and me over at JDRF’s Type One Nation.
Thanks for reading. Spread the word.
A few items of note:
1. Health insurance stuff is taking up a tremendous amount of my time and is downright upsetting (re-applying to have an insulin pump? & No CGM coverage?). After an exorbitant amount of BS, I finally am working with a health insurance broker. After the 16th phone call and 14th email to my current insurance company asking about the durable medical equipment of the new plans, I was emailed a list of approved diabetes durable medical equipment suppliers. I Googled every single one on the list. They do not carry insulin pumps, pump supplies, Dexcoms or Dexcom supplies. You know what they do carry under “diabetes supplies”? Glucose meters, prosethetic legs, and impotence devices… ummmm WTF?). So yeah, I went to a health insurance broker. When she told me yesterday that this process would be easier if I either had a dependant or a spouse, I didn’t even want to kill her (shocking since under other circumstances, those words would sting like crazy). By this, she meant that due to how my business is set up and living in the state and city that I do, having someone else to put on the plan would be a benefit for me and give me more options. I’m running out of time to get this sorted out. Health insurance being a constant stressor in my life is getting old.
2. On the other side of insurance woes, is beauty. True, all encompassing, can’t-get-enough, I-can-smell-it-in-my-sleep, beauty. Beauty that is soothing, and seems magical. I experienced this kind of beauty on Sunday when I hiked through Muir Woods in San Francisco. Realizing you are just a speck, with a limited timeline and are only here for a blip is humbling and also beautiful. You know what else is beautiful? Hearing a rustling on a hillside and a few seconds later having a buck jump right into the trail a few feet away from your face (ok that was beautiful and heart-pounding-out-of-my-chest scary). We are just so small.
3. I didn’t see this right away, but yes, a moss/Redwood trunk heart. Also, the clover leaves are all hearts too. I’d love to go back and take in all the smells again (but I’d wear warmer clothing and a hat). It smelled like Autumn leaves, moss, wood, damp air and adventure (adventure smells awesome).
4. I am blogging about my Artificial Pancreas experience at A Sweet Life (and some stuff for JDRF that I think comes out tomorrow). I’m a little behind (a lot) and need to catch-up ASAP. Tomorrow I go back on the clinical trial’s insulin pump. Today I started both trial Dexcoms. I currently look like this (well it’s freezing here so I am also wearing a HUGE sweater that looks like a tent). It’s all sweatpants and leggings for me these days. Cozy rules. Totally sexy: