Who’s Your #1 meets LOOK what I found!
Was up early today, drinking coffee in bed, bracing for a cold, wet day (I dropped/spilled buttery brussel sprouts on my winter coat and forgot to pick it up from the dry cleaner yesterday. Damn) and saw this in my newsfeed. I read it once and thought it was interesting and then a second time as the inner Jimney Cricket in my mind seemed to want a re-read (and a second cup of coffee). I think this is worth a share.
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:
This was the first thing I read when I woke up this morning (as I treated a nagging low BG). I have read it a few times throughout the day, and have read it 3 more times as I’m getting ready for bed tonight. I hope to absorb this message, let it really sink in. Let it soak through and weigh heavy in my heart. I’d like to live more like this. It’s a quote too good to keep to myself. You are already naked. How beautiful.
“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. ”
—Steve Jobs (1955-2011)
Co Founder Apple Inc.
This is from my Thank You Supporters email, however TODAY ASC reached a flabbergasting milestone and based on yesterday’s news, the final paragraph needed to be updated too:
Wow! We did it! We raised an astounding $40,714.55 and we still have donations and sweepstakes ticket sales rolling in. We have achieved a fundraising level far beyond my greatest hopes. Thank you!
We had Walkers this year from NY, NJ, PA, IL, VA and MN. We had our largest Walk team ever. We had friends and family from the very first Alecia’s Stem Cells team in 2001 and first time walkers who’d never been across the Brooklyn Bridge. We had a grandmother who’s T1D, a 40-something T1D (me), a 20-something T1D and a 8-year old T1D. The team may carry my name, but we were walking for ALL of us. Alecia’s Stem Cells was announced as one of the top 5 fundraising teams for JDRF NYC. We ran out of yellow ASC team ONE to NONE shirts and even had some walkers in the grey shirts from our online fundraising sale last month. Simply put, it was AMAZING adventure this year.
At our post Walk lunch, I finally got to announce what I’d been waiting 2 months to say, this year I was saying good-bye to Alecia’s Stem Cells. Sunday 9/28 was the end of a HUGE part of my life with JDRF and the Walk program. This team has walked 15 JDRF walks; 13 in NYC, 1 in Boston and 1 in LA. Sunday wasn’t just an end though, it was a step for me in the next level of my involvement with JDRF, and a new adventure. I am now joining JDRF’s endurance sports program, specifically I am looking to participate in 2015’s “The Ride” which is a 100 mile bike ride held in various spots across the United States (including Death Valley which sounds like a place I’d like to avoid). I am excited and scared silly to train for something like this, not just as a T1D navigating low and high blood sugars in an endurance sport, but as someone training on a bike via Manhattan streets (yikes… well for now). My next “step” is less about stepping and more about pedaling.
To the Walkers, the fundraisers, the donors, and everyone who sold/bought our online shirts and Mercedes raffle tickets, I thank you. Whether you walked or cheered us on, you are indeed part of the ASC team. Thank you to everyone who supported my fellow walkers too. We had many walkers who reached V1P status by raising over $1000 for our team. Thank you for supporting my dream, a dream shared by so many others involved with JDRF, that there IS a future where T1D simply doesn’t exist.
As all this Walk stuff has been going on, I have been involved in another project that has been a rollercoaster (since June 2013). On Friday, I had my final screening at Mt. Sinai for the next step as a hopeful participant in an artificial pancreas clinical trial. As I have mentioned, this is just ONE program that is happening because of a grant from JDRF. The Artificial Pancreas is not a CURE, but it is an incredible advancement in diabetes care and management. The Artificial Pancreas Project is JDRF money at work. This is happening because of YOU.
Yesterday I got my results. I am no longer a candidate. I have PARTICIPANT status.
Thank you for helping JDRF turn Type One into Type None.
Now, I need to get a bike (don’t worry, I do have a helmet).
Love and gratitude. xo
Here are some D travel pointers and PLEASE add to them.
There is enough information out there regarding insulin pumps and being on a plane that you could stay busy reading for days. All sorts of info about the affects of altitude, cabin pressure and the pressure in our own bodies. Here’s what I know (for myself). Be prepared to do a pump site change once you get where you’re going. Traveling with extra supplies is a given, so add an extra, to your extra set of supplies, for that change.
You are allowed 2 carry-ons. Do not put your D supplies in the larger of the the 2. I repeat DO NOT. Your roller board may be small and fit perfectly in the overhead BUT that does not mean, with all the other passengers, there will be room for YOUR bag above your seat. If it comes down to checking your bag at the gate or at the door of the plane, frantically pulling out Dexcom and pump supplies with your undies falling out of your bag is no fun. Nope. No fun. Unless you have silly undies.
Insulin pumper? Yes? Bring a back-up pump. You could live your whole life and never have a pump problem. You will go someplace unfamiliar and your pump will be so excited, it will go cuckoo. Lots of companies have pump loaner programs. Did you have a pump BEFORE the one you have now? Bring it. It may be just something else to lug around and if that’s the case, consider yourself lucky. If you are in another country over a major holiday and discover a crack in your pump, no matter how great the pump company is, customs is a biatch and you will really really really be glad you have a back up.
Carry quick sugars that don’t melt. Glucose tabs are my go to. Glucolifts are my current fave but who doesn’t want a Starburst from time to time? They melt. Treating a low while eating the Starburst rapper because it was all melted together is simply not the ideal. Maybe the paper is a source of fiber? Doubtful. No melting treatments for lows. Do it.
Take a photo of your pump settings. Let’s say that awful scenario of having to use your back up pump OR simply something goes wonky with your current pump…. Do you have any idea what your basal rates are off the top of your head? I do not. Having a pic on your phone can be a true game changer. Also this takes maybe 20 seconds to do, so do it.
We all know a zillion horrible D stories of people going through security. I have a few incidents myself which were full-on “oh no you didn’t”. Here’s what I try to do. I try to be pleasant. I smile. I make jokes. I am courteous. Why? Because why the hell not? I want to get on the damn plane, not cause a scene. I engage in conversation. Don’t get me wrong, I actually was in tears once with a bunch of security BS and then flew across country being upset the entire time BUT for the most part, I lay on the charm. Flies, honey, vinegar. You chose.
If all else fails and you’re away from home, and perhaps you’ve traveled all over the damn place and yet THIS is the trip where you forgot a supply, reach out to the DOC. The diabetes online community is a bunch of doers and helpers. It’s amazing and heartwarming. Social media can really be your BFF. When my Dexcom sensor went bananas on a trip to Dallas (and I didn’t bring a spare), I was amazed at people’s willingness to either send me a sensor OR contact Texans they knew to try to help. Amazing. Dexcom Fedexed me a new sensor to my hotel. All worked out but would have loved to have skipped that stress.
I’m off and running! Travel safe.