The diabetes community has something in common besides malfunctioning pancreases*: our giving nature.
*I prefer pancrei, but Webster’s would probably laugh at the petition.
We do it all year round and in many ways: Spare A Rose, Save A Child; JDRF and ADA Walks, volunteering time and talent to projects like Nightscout (CGM in The Cloud) and Tidepool, sharing knowledge and much needed support through non-profits like Diabetes Hands Foundation and diaTribe (who is celebrating their First Anniversary as a non-profit!) and much more.
So, it seems strange to ask you to donate today, because you already do so much to help others in our community, but here I go, hat in hand (but a lovely chapeau it is, bedecked in feathers and a wide brim)…
Whether it is a few minutes or a few dollars, please consider helping these worthy causes today:
It costs you nothing, but the addition of your voice is priceless.
We have two days left to tell the FDA that patients should be involved in every discussion, at every level, when it comes to the devices we use to keep us healthy and safe. Go here, read the easy steps, and add your comments to the FDA docket. (It closes December 4th, so giddy up, cowboy.)
I’m truthfully astonished to see how far the diabetes community has come in the last year, rallying to ensure the FDA understands how important our opinions matter. They’ve been stellar at recognizing and working with us, but there are no resting on laurels, because while we know it and some forward-thinking individuals know it, not everyone does. Until there’s a cure, all we have is our voice. Give it today.
You’re Going To Shop, So Might As Well Give At The Same Time
Full disclosure: When I’m not being a rabble rouser or loving on my family, I’m the founder of The Diabetes Collective, Inc., which is a recognized 501(c)(3) non-profit organization, created to fund programs like The Diabetes UnConference. There are so many wonderful non-profits out there that focus on living well with diabetes, so why create one more? Because there wasn’t a program designed to bring all adults with diabetes together to share their thoughts and get support in a safe environment. In order to make that happen (and some other things that will be coming after the first Diabetes UnConference is in the bag), The Diabetes Collective, Inc. was founded.
Amazon has a program called AmazonSmile and you can select The Diabetes Collective as your charitable organization.
“The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. The purchase price is the amount paid for the item minus any rebates and excluding shipping & handling, gift-wrapping fees, taxes, or service charges. From time to time, we may offer special, limited time promotions that increase the donation amount on one or more products or services or provide for additional donations to charitable organizations.”
There is NO additional cost to you. The prices on Amazon are the same as if you are shopping without the AmazonSmile selection.
Please consider helping this way by choosing The Diabetes Collective, Inc. as your non-profit organization and help support the scholarships we provide to bring people with diabetes together to have the discussions they can’t have with their doctors or family.
If You Got a Penny or Two to Share…
You can donate directly to The Diabetes Collective, Inc. by clicking on the button below or on this link. It will take you directly to a secure PayPal checkout.
This is a tax-deductible donation so you’ll get a tax receipt from The Diabetes Collective, Inc. for 2014. Any amount will help.
But I also want to direct you to another amazing opportunity that is near and dear to my heart: The Bionic Pancreas.
You can donate (and it’s tax -deductible) here:
There you have it. Three ways to give: no money, giving through shopping, and giving through tax donation. Do one, two, or all three.
Wait. Stop. There’s one more way to give.
You can share this post with your friends. Your family. Strangers on the street. Tell them about how important a role diabetes plays in your life (even though you don’t want it to…) and how they can help you and millions of other people. (And if you don’t follow this blog on Twitter or Facebook, please do! I’m funny on all sorts of social media avenues!)
So, give. Whether it’s your time, your shopping acumen, or with a financial gift. I adore you for even allowing me to put it out there.
Give what you can.
Do what you can.
And we are grateful.
She was born five weeks (and one day) early. A little bit of a low blood sugar upon arrival , so she went off to the NICU for a few days. The nurses fought over who could hold her; she was the only baby in an open bassinet who could be picked up.
“We were going to move her to the intermediate care nursery, but she had a brief bradycardia incident.”
As parents who didn’t brush up on the NICU speak before arriving, we learned quickly that her heartbeat had slowed because she forgot to breathe. It’s common amongst preemies, but it’s still a freakout show when you hear that it’s happening to your child. Forgot to breathe? What?!!!! Despite that “brief” moment and a few others just like it, she came home with us 96 hours after she was born. (John and I occasionally raised our eyebrows at each other as we were being discharged. They’re letting us take her? Wait…. we’re not ready.)
The first few weeks postpartum are tough, regardless of how the birth all went down, and due to her feeding schedule (every.two.hours), I was a
little extremely loopy. The cycle was feed her, burp her (careful not to pat her back so hard that I knocked her head off, because that was also one of my concerns), put her back to sleep, then pump breast milk for the next round so that I could get some sleep and John (or my parents when they visited) could take over.
I cat napped with my hand on her chest, feeling her heartbeat and her little chest rise and fall. I refused to sleep deeply. She slept next to me within arms’ reach. And I had quiet panic attacks. What if she stopped breathing and I wasn’t there? What if I was sleeping and she needed me?
What if she…died?
No matter what someone else says to allay your fears, there is always that deeply rooted feeling of unrest that claws at the base of your spine. She did not have any more bradycardia moments. She kept breathing.
She likes to snuggle next to me and fall asleep now, and I still find myself watching her little chest rise and fall.
I think I will try to watch that forever.
Yeah, so what does your story about The Kid have to do with sleep and diabetes?
Sleeping with diabetes is like having a preemie. Will I go low tonight? Will I wake up for the low and treat it myself? Will I stay in the low for hours and… I can’t even think about it.
My CGM is the hand on my chest. I have dear friends who have slept through the CGM alarms and have needed help to bring them out of severe hypoglycemia. I know of parents whose fears were realized. There are no words.
For parents of children with diabetes, my heart aches for their fears. Every time the alarm goes off and they check their sleeping child at night, the fear rises. Using CGMs and the jaw-dropping technology of Nightscout, a DIY remote monitoring for Dexcom have helped those parents immensely.
Elizabeth Stone said:
“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. ”
She didn’t mention the pancreas, but we get it.
For those of us who have diabetes or have a loved one with diabetes, sleep is not restful. When we do, we dream… of days of freedom from the fear of lows and what those bring. It’s well documented that sleep and Type 1 diabetes don’t go well together:
- Cardiovascular autonomic neuropathy contributes to sleep apnea in young and lean type 1 diabetes mellitus patients (Sleep sucks because of diabetes)
- Impaired sustained attention in adult patients with type 1 diabetes is related to diabetes per se (I hate this quote: “Patients with type 1 diabetes have altered sleep characteristics and are thought to have deficits in sustained attention.” I hate it because it’s true.)
- The Relations of Sleep and Quality of Life to School Performance in Youth With Type 1 Diabetes (Parents, you may want to skip this one if you aren’t feeling particularly happy right now, because it’s downright depressing.)
But there is hope:
- Impact of continuous glucose monitoring on diabetes management and marital relationships of adults with Type 1 diabetes and their spouses: a qualitative study I love this quote: ‘Both the pump and continuous glucose monitoring have been a godsend for us. Initially, I looked at it more as it was good for her, but in reality, it’s for me because I can wake up in the morning and if I don’t hear that thing beeping or if I wasn’t woken up in the middle of the night, I can let her sleep another hour… It was nice for me to have some way of knowing what was going on…’ (male spouse, age 41 years)
- Closing the loop overnight at home setting: psychosocial impact for adolescents with type 1 diabetes and their parents (It’s a foregone conclusion that the latest technology like the Bionic Pancreas will help parents and Type 1s sleep better at night…)
There is no magic wand or pixie dust to help us sleep. And sometimes, no matter how adorable they are, they still raise hell at 3am. I know this from experience.
But there are devices/products/software/services that can lessen the burden. And I encourage you… if you haven’t investigated them, check them out.
If you haven’t heard of Nightscout or the #wearenotwaiting movement, get on over to the Nightscout website. Some of the stories of individuals using this will make you smile and make you grateful for the smart people who help us get our data to where it needs to go: in the hands of those who can help us immediately when things go south.
And then there’s Tidepool. Howard and his team are rocking it big time, working with device companies to make our data readable and workable and easy to understand and I.want.Nutshell. right now.
And, of course, if you haven’t heard about the Bionic Pancreas, well… here. I am a fan. A big fan. Like, Beatles girl screaming and swooning fan.
You may know me personally; you may not.
It doesn’t matter.
I have never - and I mean never - asked for money from my friends or family - or strangers - for diabetes. I’ve donated plenty to walks and research institutes and organizations for better care and cures. But I’ve never asked from others.
This is my first time laying it all on the line for something I know will make a difference for every person with Type 1 diabetes, so I’m standing up boldly and asking you to read on.
One hundred years ago, a diagnosis of diabetes was a death sentence.
Type 1 diabetes is an autoimmune disease in which the body attacks and destroys the beta cells in the pancreas that create insulin. The cause of the disease is not known and there are no preventative measures.
Unfortunately, despite research and advancements in technology, there is still no cure. I sadly know this all too well. I was diagnosed with Type 1 diabetes thirty-one years ago.
Daily living is a precarious challenge for the over 3 million people with Type 1 diabetes (and their families who love and care for them) in the United States.
Insulin, the drug that keeps people with Type 1 diabetes alive, is dangerous due to the complex dosing calculations to keep blood sugars stable. We self-manage our disease, making decisions each day to the best of our ability.
We are human. We make mistakes.
Too much insulin may cause seizures and unconsciousness without the administration of glucagon, a counter regulatory hormone that raises glucose in the blood. Too little insulin can increase the chances of long-term complications such as blindness, kidney failure, heart attacks, strokes, and nerve damage - and cause comas quickly if no insulin at all is given.
In both extremes, death becomes a sobering and real possibility.
Despite my vigilance, diabetes has done irreparable damage to my body. I am unwilling to let this disease continue to ravage my body – or anyone else’s.
Imagine a medical device that calculates and administers the proper amount of insulin and glucagon without human intervention or guesswork, keeping a diabetic’s blood sugar in “normal” range and eliminating the fears of immediate and long-term complications.
It exists now.
The Bionic Pancreas uses a complex algorithm for insulin and glucagon dosing based on glucose readings taken from a continuous glucose monitor every five minutes - 288 dosing decisions per day, 7 days per week, 365 days per year. The automatic dosing decision is delivered via insulin/glucagon (bihormonal) pump without the diabetic doing anything.
Created by Dr. Edward Damiano of Boston University and a dedicated team of collaborators from Massachusetts General Hospital and Boston University, this revolutionary device has been undergoing successful clinical trials and is expected to receive final FDA approval by 2017. (Dr. Damiano has a personal stake in this: his son, David, has Type 1 diabetes.)
Not only will this device change my life and those with Type 1 diabetes, it will lessen the financial burden on the U.S. economy: in 2012, diabetes accounted for $176 billion in direct medical costs and $69 billion in reduced productivity.
While private and government support have accelerated the successful clinical trials, funding is needed to build the integrated bihormonal Bionic Pancreas platform that will be used in the final pivotal study of 2016. This new platform is intended for commercial production after FDA approval.
I’ve held the device in my hands. I’ve talked with the clinical participants. I’ve diligently read the research. (And this research, too.)
I know this works.
We need your help to finish the Bionic Pancreas and put it in the hands (and on the bodies) of people like me.
Unlike other requests for donations, your financial support for a medical device that is not in a nebulous research state, but a viable, tangible product will ease the emotional, financial, and physical burden for those living with Type 1 diabetes and their families, employers, and friends.
No. This is not a cure. There may be a cure someday, but until then… I want to have a life without daily high and low blood sugars and the threat of complications looming over me.
Drs. Damiano and Russell have discovered a way for people with diabetes to not just live, but thrive with the Bionic Pancreas.
Your support is needed.
Every dollar you give is tax-deductible and goes directly to The Bionic Pancreas project, not for “administrative fees” or extraneous knick-knacks.
Skip a Starbucks run. Donate $5. Skip two, if you’re so inclined. $10..
Or $20… or $50… or more.
Every dollar means something.
Here’s the link to donate.
You can change my life. You can prevent the heart attacks and kidney disease and complications caused by diabetes. You can allow us - and our families - to live - to thrive, without worry.
You can change our future right now.
Thank you for reading all the way to the end, because that’s what I want.
An end to the challenges of Type 1 diabetes.
Much love and gratitude,
P.S. I won’t know if you donated. That’s not important to me to know how much I raised. It’s not about that. Even if you can’t donate, you can still help. You can help by sharing this post far and wide. Tweet. Facebook. Pintrest. Tumbler. Skywrite.
Please feel free to make the story your own if you or someone you love has Type 1 diabetes and you believe in this project. This is the one time I won’t talk about copyright. This post is for all of us. Help in any way you can.)
I still haven’t recovered from the Children With Diabetes Friends for Life Conference (CWDFFL) last week. I’m tired in a good way and my head is still full of ideas that I want to share with the DOC (and others that I will keep to myself because they are so very personal to me). Expect to see a lot of posts over the next few weeks about FFL as I come back down to earth, but for now… it’s Fab Five Fridays: FFL Style!
Christopher Angell, a Type 1 diabetic himself founded the company and I’m so glad he did. (His dad helps at trade shows… see Christopher’s comment below…They currently offer three flavors (Orange Creme, Wildberry, and Cherry) but I think there are more flavors on the horizon. (Many in the DOC are pulling for Nutella flavored tabs, but Chris is keeping mum…)
You know how you’re low, pop a glucose tab that you bought at the store, and go: “Oh, yuck. I have to chew this? Yuck!” Glucolift doesn’t make your brain do that. And unlike the old B-D Glucose tabs (which haven’t been available for years, may they rest in peace) or Starburst or juice, you’re not going to overdo it and end up sky high a few hours later.
You can order Glucolift directly from their website and they send you a nifty-gallifty (Extra points if you know that phrase’s origin) travel tube and a cool sticker. When we were at FFL, Chris put a Glucolift temporary tattoo on my daughter’s arm (with my permission, of course). She wore that tattoo proudly and showed everyone her “rocket ship!”.
I keep a jar of Cherry next to me in the cupholder in the car, one on my bedside table, and a full travel tube in my purse.
(They have a sample pack with all three flavors and a free travel tube so you can pick your own favorite.)
2. Drs. Sean and Tamara Oser - I attended a session about how to be the best patient you can be, led by these two very intelligent and very personable doctors. Sean is a Type 1 diabetic and so is one of their gorgeous twin daughters. They have the full 360 degree perspective: as doctors, as patients, and as parents of patients. I learned so much from them (and was shocked by some of the statistics they shared, which is another post in itself), but the cool takeaway was a planning worksheet to prepare you for your appointment. I’ll ask them if they’d be willing to post it online for download, because it’s so worth it. Sean blogs at t1works and Tamara blogs at t1family. Check them out!
3. Dr. Ed Damiano and the Bionic Pancreas (sounds like a band, doesn’t it?) - I’m still, a week later, trying to put into words what I felt listening to this gentleman speak. Driven by the T1 diagnosis of his young son, he set out with a grad student of his to create an algorithm that would push a little insulin or a little glucagon based on a CGM reading. I held it in my hands and sat with Anna at our table, who participated in the human trials this spring. (Scott Johnson even wore the CGM portion of it for the remainder of the conference and we saw his BG numbers on a large screen) I want one now, but I’m willing to wait four years until it’s available. Four years. It may seem like a long time, but in the diabetes timeline, it’s a blip. I’ll have a whole post about him and the Bionic Pancreas. Soon. Promise.
4. Meri Shumacher - Mom to four boys, three of whom at T1, she was one of the keynote speakers. Dr. Richard Rubin, who was a huge force in the DOC for years, passed away from cancer this year, and Meri had a special connection with him. Please have tissues handy when you read My Homage to Dr. Rubin at FFL 2013 - this is her keynote address.
5. Friends For Life 2014 - July 2-6, 2014. ORLANDO. Put it on your calendar. Look, whether you are an adult Type 1, teenager T1, parent of a T1 or interested in diabetes research, this is where you need to be. As I sat next to my parents at the keynote (They were so gracious as to attend to provide me some much needed toddler backup.), I wished with all my might that this conference existed thirty years ago. I’m grateful that it exists now. Join us next year. Please. I want to meet more amazing people. You were missed.