Category: Diabetes Awareness Month

#DiabetesDivide – How to Close The Gap

sidewalk-crumble-1487848-640x480I’m at the airport, waiting to get on a flight to NYC for The Diabetes Divide: Cities, Inequality, and the Spread of The Disease event hosted by The Atlantic and underwritten by Novo Nordisk US and thoughts about the upcoming discussions have actually prevented me from sleeping soundly. Why? Because we have a divide and the solution to close the gap isn’t simple.

Here’s the description of the event:

Diabetes is a serious public health challenge: 29 million Americans have diabetes, and 86 million more are pre-diabetic. Worse, the disease disproportionately strikes racial minorities, and trends show that diabetes prevalence is growing at an alarming rate in urban areas. How do socioeconomic, racial and geographic factors shape how the epidemic is being addressed in urban communities — and perceived by the general public?

In a town hall event with community leaders, patients, public health experts and more, The Atlantic will consider the social determinants of diabetes, and what they require of the response.

The “patients” on the discussion surrounding Citizens and Diabetes are Kelly Close of Close Concerns and diaTribe and me. We’ve been paired with a physician from Mount Sinai and the VP of Healthy Lifestyles, YMCA New York. The topic will be moderated and truth? I have no idea how the conversation will unfold.

There is a divide. Culture, race, perceptions, health insurance, food deserts, and motivation all play a part in the rise of Type 2 diabetes. These are the questions that caused my insomnia:

  • How do you change a society that values convenience?
  • How do you entice someone making minimum wage to purchase “healthy” food choices when few restaurants and grocery stores offer them at a reasonable price?
  • How do you counter cultural pressures surrounding food? (Imagine a 45 year-old construction worker saying to his friends: “Hold on while I run into the bodega and grab a kale salad with chicken and an apple for lunch.”)
  • How do you test individuals for pre-diabetes when they can’t afford to go to a clinic?
  • How do you explain to the healthcare system that simply telling an individual to lose weight and get some exercise is not going to change behaviors?
  • How do you get someone to take time out of their lives to do diabetes education programs or diabetes prevention programs when they’re working two jobs to feed their family?
  • How do you tell someone to walk a half-hour each day when there is no safe place for them to walk?
  • How do you “market” diabetes in way that truly matters?
  • How do you teach children that Type 2 diabetes does not have to be an inevitability in their lifetime when the latest statistics show that 1/3 of kids and adolescents are overweight or obese and they’re not getting enough physical activity?

Cities Changing Diabetes is a project that was begun by NovoNordisk and other partners looking for solutions. They understand that it takes more than one organization to attack this issue, so they are working with healthcare, non-profits, and social services organizations to combat the rise. It’s also important to note that rural areas have their own issues. Another time, another event.

My type of diabetes was not caused by race, weight, or sedentary lifestyle. (My beta cells left the pancreas party and never came back.) Type 2 diabetes is also not caused by race, weight, or sedentary lifestyle.

I don’t believe in the “You ate too much sugar and you are lazy. That’s why you have diabetes.” These can be contributing factors, but Type 2 diabetes is a metabolic disease that can, in many cases but not all, be prevented with small changes to every day life. (And more importantly, shaming and blaming individuals with Type 2 diabetes is also a cultural issue that needs addressing.)

How do we make a difference? Good question. I’m hoping for answers at this event and ways that I can help my diabetes community become healthier – and maybe prevent the community from growing larger. We’re a great group of people, but I’d like to keep it as exclusive as possible. The cost to enter this club is pretty expensive.

If you want to watch the event, you can register here. (You can see me be nervous live!)

 

#CollegeDiabetesWeek

unnamed-8I rode to McGill University on a wooly mammoth with my abacas strapped to my back.

At least, it feels like I did when I talk with current college students. (I didn’t have a cell phone. FaceBook didn’t exist. You wanted to use the Internet? Go to the computer lab.) Yet, despite the years that will separate our convocation dates, we have the same university experiences: not enough sleep, too much to do, new challenges to face, and navigating towards an uncertain future.

For some of us, we add diabetes to the mix to make it fun. (I wish there was a sarcastic font. Then again, most of this blog would use that font. Never mind.)

I didn’t hide my diabetes, but I certainly didn’t raise awareness, advocate for myself, or seek out other T1s to get support at McGill. I didn’t know a single person with diabetes the entire four years of my undergraduate degree. When I disclosed this to the team at the College Diabetes Network  (CDN) last week, my heart ached a little.

Christina Roth, founder and CEO of the College Diabetes Network explains why CDN exists: “In 2009, during my junior year at the University of Massachusetts, Amherst, I started a group on campus so that I could meet other students juggling diabetes and college life. That group changed my life and the many barriers I experienced in creating the group changed the path of my life.”

I needed that peer support back then, just as much as I do now. I’m thrilled that this organization exists and is creating programs so that support is always available for students (and parents and friends, too!).

College Diabetes Week

logo_0This week (November 9 – 13), I’m going back to college. Not on my wooly mammoth, but on the Internet, and I hope you join me on social media.

As part of National Diabetes Awareness Month, CDN is hosting the 2nd annual College Diabetes Week. With over 30 campuses participating in the week’s events, we can join in on the fun (well, at least online)!

What’s this about? Here is a blog by one of the CDN students about College Diabetes Week.

How can you participate?

Use the #CollegeDiabetesWeek hashtag (and you can also use #college and #diabetes too!) to share your thoughts about what it’s like (or was like) as a college student with diabetes. Each day is a different theme:

Monday – Education

Tuesday- Fundraising

Wednesday- Awareness

Thursday Advocating

Friday- Celebrating!

Friends? Yes. Did they know I had diabetes? Only two of them. The others thought I really liked LifeSavers.
Friends? Yes. Did they know I had diabetes? Only two of them. The others thought I really liked LifeSavers.

If you could go back to university, what would you do differently to help educate, fundraise, raise awareness, and advocate? How would you celebrate life with diabetes as a student? What do you want current students to know?

Share your thoughts, views, and ideas on Twitter, Facebook, and Instagram and help CDN make this an amazing #CollegeDiabetesWeek!

 

#LaceUp4Diabetes – I'm Giving Away These Sweet Laces, Too!

unnamed-5I’m lazy. There. I said it. My cardiologist even told me: “You’re lazy.” (I like medical professionals who don’t beat around the bush.)

I need more exercise. O.K., I need to starting doing some exercise.

Ironically, Novo Nordisk contacted me a few days after my doctor’s appointment and asked me if I would participate in their #LaceUp4Diabetes campaign to show how we can take steps to reduce the risk of diabetes (or in my case, reduce my laziness and my blood glucose levels at the same time!). Of course, I said: Shoelaces?! Count me in!

I’ve got five extra sets of laces and I want to send them to five lucky random people within the next few days, so they can participate in the #LaceUp4Diabetes campaign on World Diabetes Day (November 14th…)

Here’s how you can get these sweet (yep, pun intended) laces:

Take a picture of you in your sneakers. (Points for creativity, you know! Think outside the box… or the sneakers in this case. Please do wear clothes.) Then, by Monday, November 9, 2015 at 5pm:

  • Instagram the pic using the #LaceUp4Diabetes as a hashtag and theperfectdblog in the caption (this way I’ll know it was meant for this giveaway!)
  • Facebook the pic using the #LaceUp4Diabetes as a hashtag and upload it to ThePerfectD’s Facebook page: https://www.facebook.com/ThePerfectD What? You aren’t a fan of this page yet? All the cool kids are fans. Come jump off a bridge with us!
  • Tweet the pic using the #LaceUp4Diabetes as a hostage and mentioning @theperfectdblog in the tweet. Don’t follow me yet? Follow me. I’ll lead you down the primrose path or the yellow brick road or the rabbit hole, but I promise it will be fun!

I’ll select five lucky people based on creativity and ingenuity and the results from the swimsuit competition.  

I’ll announce the crazy people who participated and won on Tuesday, November 10th.

#LaceUp4Diabetes – I’m Giving Away These Sweet Laces, Too!If you’re selected, I’ll ask for your email and mail address and I’ll ship these laces out to you ASAP so you can have them by November 14, 2015.

You don’t have to have diabetes to participate. You just have to want to help take a single step towards diabetes awareness. 

As for me, I’m going to take a step. I’m joining a gym and will make it a priority to work out three days a week, even when I’m traveling. I’m packing my sneakers with the laces that remind me that I have the power to help myself…

Disclosure: Novo Nordisk sent me six pairs of shoelaces with no instructions. I’m doing this giveaway of my own free will and sending these to five people (because I kept a pair and laced them up on my sneaks…) of my own money (which I wish was free). They didn’t ask me to write about this. They didn’t ask me to share anything. We are a community. Sharing and helping and supporting is what we do. 

If you want to find out if you’re at risk of diabetes: AskScreenKnow.com

If you want to get a personalized support program for people who live with diabetes – and their caregivers: Cornerstones4Care.com

If you want to learn more about Novo Nordisk: novonordisk-us.com

Take a step, take a photo, win shoelaces. Go!

 

My Blue Veil…

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.

photo-6

 

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…

photo-5

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.

 

All Right, Stop. Collaborate And Listen…

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…”

heroBy 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…”

DM Summit Logo 2013I’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…”

logo-2Open 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:

And I may have a thing for Vanilla.