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. 

 

0 comments

  1. Scott E

    So this post seems to have started out with a lot of good stuff, but then moved on to things that are a bit more unpleasant. I’m quite impressed over how much you typed with that bum finger!

    But this post really helps to explain your motivation for why you do what you do. There’s already an inequity when it comes to having diabetes, but then the further inequities regarding insurance coverage is tragic. There *IS* a problem; and yo, I know you’ll do your damn hardest to solve it.

    I really admire your dedication to making things better. I mean: Word to The Kid’s Mother.

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