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. 

 

Three Is A Magic Number

Out of all the Schoolhouse Rock videos, this is my favorite. (I’m Just A Bill and Elbow Room are runners up.)

There is something magical about the number three. And that song (and the cover done by Blind Melon, too.)

But today, three is not a magic number. It’s the number of trigger finger releases I am supposed to have in a few weeks.

I say supposed to have, because like any empowered patient, I’m going to to do my research about having three fingers done on one hand when only one is actively triggering (although my pinky and my middle finger – hey!). I’ll ask around, look up information in medical journals and perhaps even get a second opinion by another hand surgeon. Why, you ask?

My Appointment Was Not What I Expected

The appointment itself was interesting, because if I had met the surgeon a few years ago, it would have been a different conversation. Here’s how it went (and my thoughts as it happened).

My appointment was for 12:10pm. Brought into a room by Jason with a M.A. on his name tag.

::What does M.A. stand for in this office? Master of Arts? I don’t think so.::

“So, why are you being seen today?”

::Does ANYONE read the reams of paperwork they make me fill out? Anyone? Bueller?::

I give him the lowdown. 

“How do you know that it’s trigger finger?”

::Again, paperwork. Four previous trigger finger release surgeries.::

“You’ll get an x-ray and then the doctor will be in to see you.”

From the time I saw Jason and got two X-rays on my hand, it was another 40 minutes before I saw the doctor.  He breezes in with a guy behind him wheeling a cart with a computer on it. His own personal stenographer for electronic health records.

He knows I have trigger finger. There are no questions. I didn’t get an opening statement in.

Because of my friends, Drs. Sean and Tamara Oser, who present an incredible session at Friends for Life, I know this statistic: 

In a well-known study of the survey phase, Beckman and Frankel found that physicians prevented patients from completing an opening statement 77% of the time. Those who interrupted their patients did so in a mean time of 18 seconds.

He beat this statistic to death.

“Hi, I’m Dr. X (not his real name, although that would be neat, right?). So, let’s see your hand.”

He examines it. Palpitates the area where it hurts. I wince. He keeps asking me to open and close it, telling me to make a fist.

::I can’t make a fist, dude. My finger won’t do that anymore. If it did, I wouldn’t be here.::

He pokes at it again, while I explain that I’ve had trigger release done before, but not here and not for this finger.

“O.K., so I’m going to give you a cortisone shot.”

Options

::Oh, no you aren’t.::Water Punch

::He didn’t even give me options. Ask me if I’ve ever had a cortisone shot in the FOUR other fingers I’ve had trigger finger. Explain that I could choose: physical therapy, cortisone injections, percutaneous release or open surgery release. Four options. I know which one would work for me, for most Type 1 diabetics, but HE DIDN’T GIVE ME OPTIONS.::

“Dr. X, I’m not doing a cortisone shot. It’s been proven and published that it’s not a successful treatment option for individuals like me with Type 1 diabetes. Surgery is almost always done in these cases following a cortisone shot.”

He looks at me, then turns to the steno guy, who is now looking confused.

“I’ve done the research. I am an e-patient.”

He looks at me again. He says:

“I’ve done over 10,000 release surgeries. Most people with diabetes do end up with surgery.”

The steno guy is wide-eyed. Dr. X nods to me, then tells the silent interloper with the computer:

“We’re going to do surgery.”

He turns back to me, starts palpitating my palm again and asks if there is any pain when he presses here or here.

::Yes and yes.::

“You know that you’re already showing signs of triggering in your pinky and it’s only a matter of time before you’ll have to have the pinky and the middle finger done. So, let’s go ahead and do all three while we’re in there doing the ring finger.”

::I am so over this trigger finger thing. Whatever.::

After this brief conversation, he leaves and I schedule surgery, but not before he popped his head in and told me that I would probably want to schedule it at one surgery center over the other he uses, because the anesthesia company he uses does not accept insurance at the one closest to my house.

::In my next life, I’m coming back as an anesthesiologist.::

If this had been a few years ago, I would have blindly accepted the cortisone shot, then floundered for weeks dealing with super high good sugars and staggering amounts of insulin to bring it down, eventually ending up in his office again, this time to schedule surgery.

I have done a lot of research, talked with my friends in the DOC, and had this done four times already, I didn’t go in blind. I just came out angry.

Angry that I wasn’t offered a choice. Angry that I had to state that I was going to have the option he didn’t initially present to me. And then I am angry because I am not even sure I should have three fingers released when I know only one needs to be done right now.

Questions

So, for those of you who have had trigger finger release surgery, has anyone had THREE fingers done at once? What would you do?

And maybe the other question I have is this: Is it wrong to expect doctors to have a conversation with you about options, because right now, I’m as confused as the poor steno guy?

 

 

 

 

 

The Wrong Finger

1283953_23864084One of the lovely little complications that you can get from having diabetes is stenosing tenosynovitis, affectionately known as “trigger finger”.

What is Trigger Finger?

À la Wikipedia:

a common disorder characterized by catching, snapping or locking of the involved finger flexor tendon, associated with dysfunction and pain. A disparity in size between the flexor tendon and the surrounding retinacular pulley system, most commonly at the level of the first annular (A1) pulley, results in difficulty flexing or extending the finger and the “triggering” phenomenon. The label of trigger finger is used because when the finger unlocks, it pops back suddenly, as if releasing a trigger on a gun.

Let me add on:

The pain of trigger finger can become so bad that it wakes you up in the middle of the night. The locking of the finger in a curled position to an open position can make you see stars and clench your teeth and make you lose your breath. The inability to flex the finger renders it useless.

Trigger finger is not one of those items on the list of complications that you learn in your quest to understand what diabetes does to your body. Kidney disease, blindness, cardiovascular issues… they get all the attention. Those get hammered home in all the media and resource information.

Trigger finger isn’t even on the first page. In fact, until the first time it happened to me, I had no idea it was a complication at all.

Ain’t My First Time At This Rodeo

About ten years ago, I got “hitchhiker’s thumb”, which is trigger finger… except it was… yeah. My thumb. Both of them at the same time. (Long story. You can read it here.)

After The Kid was born, it was my index fingers. Both of them. Repetitive motion can trigger (sorry for the overuse of the word) trigger finger, and I was changing a lot of diapers. By the time I dragged myself to the orthopedic surgeon, I couldn’t change a diaper or move them much at all.

Well, it’s back. Just one finger this time. My ring finger on my right hand. And it’s the wrong finger. (I’d much prefer not to have it at all, so any finger is the wrong finger.)

How Do You Fix Trigger Finger?

First line of defense that many people try is: NSAIDS (anti-inflammatory meds), splinting, and steroid injections into the tendon.

While for non-diabetics, the injections of steroids can help and make this issue go away, it’s not a successful course of action. Surgery is recommended to most people with diabetes: percutaneous release or open release. (The first is done via a needle inserted without cutting open the hand.) Open release surgery has been my only option, where the surgeon opens up the sheath surrounding the tendon and as it was explained to me: “the gunk gets cleaned out so that the tendon can smoothly move back and forth”.

So, right now, I’m splinting it and taking NSAIDS. I’ll most likely have surgery as soon as I find one I trust in the area (I moved last year…).

In the meantime, my typing is slow and a little very painful and I am apologizing to John about the level of cleanliness in the house. Unloading the dishwasher is a joke that isn’t funny. I can’t cut my own meat. My right hand is becoming less useful. I am having problems typing, which is why I haven’t written a blog post recently.

This has happened over the last few weeks. No warning. But I know the ending. And that it will most likely happen to other fingers in the future.

I’m hoping next time it’s one of my middle fingers. Because that’s what I want to give this complication.

Ouch.