Over the weekend, I had the unmitigated pleasure of wandering through the de Young Museum in San Francisco.
Most of my time spent in places of curated beauty is one of breathless anticipation, rounding corners to discover new pieces of art that stirs up emotions deserving to be felt in raw form. I have my favorite genres and periods and tend to gravitate towards those galleries, but sometimes, as I wander through a room on my way to get to what I want to see, I find what I need to see.
Edmund Charles Tarbell’s The Blue Veil.
As I stopped to admire the piece for the colors and her captured solitary moment, I noticed the placard next to it held more than just the name of the artist and who donated it. It was this…
I have no idea who Jonah Copi is, but I’m grateful to him.
My diabetes community is my blue veil.
“I give her clarity
in a state of confusion.
I give her guidance
in a time of fogginess.
I am not only her veil
but her friend and protector.”
Sometimes we forget that we have a blue veil when diabetes becomes overwhelming.
And sometimes we lift that veil to allow others to step in underneath it to see our secrets and share in its comfort.
But this is what I know: my world is colored with the beautiful blue that symbolizes my community and my friends. And I wear my blue veil proudly and hope that I can protect it as well as it has protected me.
As November draws to a close and another “Diabetes Awareness Month” is on the books, the general public will go on to the next awareness campaign. I’m not angry or jealous, as we should all look to other communities with the same openness that we ask from them. I am just so very grateful that my blue veil will not disappear or leave me. It is always with me.
Even in a museum tucked in a corner, waiting for me to find it.
No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.
“To the extreme I rock a mic like a vandal…”
I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.
I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.
Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.
The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…
“…We are all in this together.” - Rebecca Killion (type 1 diabetes, 17 years)
Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.
“Dance, Go rush the speaker that booms…”
By the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.
diaTribe is continuing the “diaTribe Gets Fit Giveaway” - giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!). They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…
“Anything less than the best is a felony…”
I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)
This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.
This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.
“Check out the hook while my DJ revolves it…”
For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.
One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.
It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)
And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.
I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.
The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.
“Quick to the point, to the point, no faking…”
Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.
John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)
I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:
Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. - Tony
I don’t think Tony gets what I was trying to say. So, here I go… no faking…
- We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
- Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
- Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.
(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)
And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:
If you have diabetes, it’s Friday, one day out of… the rest of your life.
You’ll be inundated by social media mentions of WDD and the color blue (chosen as the patron color of awareness) will be worn by those in the know. I had planned on telling you all the events and excitement that is going for World Diabetes Day, but instead, I woke up with this in my head…
This I Believe
I believe that if your pancreas doesn’t work as it should, you are part of my community. This means my voice is yours to raise if you want to help the community as a whole. This means I will champion for you, no matter where you fall on the “pancreatic spectrum”.
I believe that all 382 million people living in this world with diabetes today deserve to live their lives without discrimination, stigmatization, or finger-pointing. Diabetes doesn’t discriminate. Neither should our community.
I believe that diabetes awareness begins with me. The more I understand about my diabetes, the more comfortable I am passing on the right knowledge to others, be it friends, strangers, or the general public.
I believe that I have a duty to educate people about diabetes without prejudice or anger. We are not a house divided; some individuals with one type of diabetes has been helped by another’s research. To silo us is to separate us and the potential to learn from each other. I do not expect the general public to understand the difference between different types of diabetes, just as I do not purport to know about all of the different types of cancer. They are all devastating and have different courses of treatment, just like diabetes.
I believe that it doesn’t matter what diabetes is called. I have it. Mine might be different from yours, but in the end, our goals are the same: to live long and well with as few complications as possible.
I believe that access to technology and treatment should be available to all. Regardless of where you are, what you do, if you have insurance or live a life of privilege, we do not have a choice.
I believe the fault is in our genes, not in our choices. No one “chooses” to have diabetes and to berate or belittle someone for a perceived lifestyle discounts the science showing that most diabetes involves a genetic predisposition.
I believe that the impact of diabetes is not just on our bodies, but our psyches, wallets, and families as well. There is not enough treatment effort given on the psychological aspects of living with diabetes, not enough financial assistance given for those living with this chronic illness, and not enough support to those who love us. This needs to change.
I believe that a cure will not be the end of living with diabetes. I will always live with the vestiges of this disease, even if there is a cure found. The damage that has been done to me by the disease will live on long after a cure. There will be no way to undo what diabetes has given to my body and my mind.
I believe that we all have work to do for diabetes, using what talents we have. For some, it’s advocating, fundraising, or awareness. For others, it’s the important job of living gracefully and with dignity. We all matter in the work we do.
I believe that we cannot live a life of diabetes alone.
I believe in the power of community.
I believe in us.
This ain’t no Rog and Rerun post, but here’s their picture just in case you wanted to take a moment and remember life in the 70s.
Now that: “Hey, hey, hey!” is in your head, let’s move on quickly.
If you haven’t heard ::insert tongue firmly in cheek::, it’s Diabetes Awareness Month. Last year, I tried to give some basic information that you could share with others (including the sexy woman analogy to insulin, which is always worth a second read and a hearty guffaw), but this year… I’ve been busy doing some other things that have left me very little time to write.
DTS Payers Meeting (Which Was Poorly Named)
Last week, I was honored to sit on the Patient Perspective panel at the Diabetes Technology Society’s Payers Meeting. It was supposed to be a meeting where payers and patients and people (alliteration!) with stakes in the game of diabetes were to engage in a dialog. While the meeting was worthwhile and full of dialog, only ONE payer (and a second person who plays a fringe role in the payer world) actually spoke. (There was a CMS representative in the room, but she refused to identify herself as a payer, but we all knew who she was. She may have been on strict orders to not speak or engage, which was probably a wise idea, seeing as her performance last year in a DTS meeting gave CMS a black eye in the community.)
If you’re interested in what was discussed, Amy Tenderich over at DiabetesMine captured the overall meeting (and the feelings around it) so concisely that I’m telling you to click on this link and go read the recap of the DTS Payers Meeting.
The Diabetes UnConference
Then, having forgotten my past life as a road warrior for my previous career, I flew home and less than 12 hours later, was back at the airport headed to Vegas for The Diabetes UnConference site visit. I needed to be face-to-face with the chefs as we discussed the foods being served to our celiac attendees. For me, it was crucial to express the “this is not a fad diet for these individuals, so treat it like a nut allergy” feeling. The chefs completely understood and gave me suggestions that will ensure not only will the menus for our celiac diagnosed attendees are gluten free, but delicious as well.
And I got to tour The Flamingo’s campus. I’ve been to Vegas hotels where the rooms and the conference space are almost a mile walk (A convention in the MGM Mirage has you wishing for a foot massage before you even get to the exhibit floor). Not this place. They actually have a section of rooms that are right near the conference space and even the main section of rooms make it easy to get to where we’ll be. There’s a wide variety of food options (both in price and type) there - and even better? We’re right next to The Linq, which has more food options, a 24 hour Starbucks, and a Cupcake ATM. Yes. You read that right.
I’ll be focusing on The Diabetes UnConference logistics for the next several weeks, so expect to hear a
little lot more about the amazing events that will happen because of this event. I’ve got so much good news that my little brain is bursting.
Thursday, November 13th
World Diabetes Day is November 14th, so everyone is trying to pack in something before WDD. ::Sigh:: It’s not like we don’t have diabetes the rest of the year, but OK…
FDA Public Workshop - Regulatory Science Considerations for Software Used in Diabetes Management
This is happening all day, so if you need me, I’ll be sitting in front of my computer, watching the live stream. (Unfortunately, online registration for this webcast is closed.) If you’re curious as to what the heck this is all about, amazing advocate Stephen Shaul has what I believe is the the most eloquently crafted post ever about it. This impacts all of us, and it’s so crucial to have a patient voice in the mix (heck, a whole choir of patient voices). I’m interested in hearing Howard Look of Tidepool speak, because I so believe in what they’re doing.
Emerging Technologies to Improve Glycemic Control among Persons with Diabetes: A Healthy People 2020 Spotlight on Health Webinar
HealthyPeople.gov is ALSO holding an interesting webinar on Thursday, November 13th and YOU CAN REGISTER HERE TO ATTEND ONLINE. This will be from 12 - 1:30pm Eastern, so my lunch will be eaten while watching this. According to the info, webinar attendees will learn:
- About evidence-based and emerging mobile technologies that can help improve glycemic control;
- How persons with diabetes and their caregivers can use mobile and emerging technologies to improve their health; and
- How mobile and emerging technologies fit into larger health information technology initiatives.
Diabetes: Slowing the Epidemic
My friend, Scott Johnson, let me know about this live stream event. It will be from 8:30am to 12:00pm Eastern, so I’m missing it as I’m on the FDA Public Workshop stream, but you can watch it through the live stream on your computer. This Washington Post forum, featuring many of the nation’s top experts, will look at how to prevent, diagnose and treat the chronic disease that can cause so many other health problems, including kidney, nerve and eye damage. They’ll have a mix of speakers, including some patients and Dr. Robert Ratner from the ADA (I like that man a lot!), so I encourage you to attend if you can.
And Coming Up…
World Diabetes Day is November 14th. You have options… and I’ll share those on November 14th, but I’m sure you probably already know most of them. (But even so…)
That’s what’s happening in my world. What about you?
The last three A1Cs.
My CDE asked a simple question:
“What do we need to do?”
I love that she thinks she can help. That she can do something. But I know better.
I’m a creeper. And I know why I’m creeping up, but I’ve been ignoring it.
I’m ignoring the beeps and buzzes of my Dexcom. John will hear it go off - in the other room, because I can ignore it more effectively if it’s not near me - and he’ll say: “Your diabetes is going off.” I’ll nod, say: “It’s high.” or “It’s low.”
Actually look at it? Well…
Take action on it? Well…
Sometimes it takes someone else to point out that you’re creeping. After I went to my latest appointment, John told me that he’s noticing that I’m not doing anything after I see my blood glucose level on a screen.
“Why? What’s stopping you from doing this when you know it will help you?”
The lows are scaring the hell out of me, because I’m not feeling them until they are so bad that my heart is pounding and I’m in panic mode. The highs are safety. And when they’re too high for too long, my action is to SWAG to bring it down, but never so much that I’ll be at 100. I want to feel safe. And I also know that I don’t have to be as vigilant if I know I’m high . And that’s dangerous.
“What do we need to do?”
It’s what I need to do.
Take action. Take care. Listen to the technology that I do have to help. Do it.
I’m not burned out, but I’m in that headspace where my own diabetes becomes a distant hum of a gnat I can’t swat, so I let it buzz.
My CDE and I upped my basal rate, looking at the graphs that were in front of us, and I’m hoping that the highs will stop being so high - and I’ll work on listening to the Dexcom.
It takes listening to others sometimes to make a change happen. Listening to your medical team, your family and friends, and the DOC. (Because, DOC, knowing that I am not the only one who does this makes me feel not so alone.)
And then doing it.
So, thank you to my CDE and John and the DOC for being the “we”.
I’m done creeping for now.