Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

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2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

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I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

Diabetes Connections with Stacey Simms Featuring… Me?

DC_FinalLogo_GrayBkgrnd_Podcast-300x300I’m honored to be Stacey’s first guest on her new podcast, Diabetes Connections. We talk about diabeticFeed (RIP), the connections we make in the diabetes community, the idea of “me, too” and The Diabetes UnConference.

As I listen to it, I remembered that I got a little choked up at one point when I talked about how I felt like a failure…

Take a listen to Stacey (who is amazing) and bookmark her site. She told me that I was her guinea pig… she was speaking to the JDRF CEO next. (That took a lot of pressure off!) I’m glad I helped her get the kinks out and that I got to talk about what is important to me…

Here’s the link…

I’m off to the American Diabetes Association’s Scientific Sessions in Boston. So many research announcements are expected to be made… and I’ll be sharing what I think are the highlights. And I’ll be making connections… like I talked about with Stacey.

Have a wonderful rest of the week. Enjoy the podcast!

Forever Arriving:

IMG_0839I’d love to give you a comprehensive synopsis of what happened at the inaugural Diabetes UnConference in Las Vegas a few weeks ago, but I can’t.

It’s not because of the social media blackout (more on that later in another post) that the attendees agreed upon at the beginning of the sessions so that people could talk freely about personal issues.

It’s not because no one took notes or had nothing to say. Others have already spoken eloquently about their experience.

It’s because I can’t yet fully wrap my arms around what transpired, because they are filled with my heart. And my heart is filled with emotions I thought I could handle, but apparently… silly me. Two weeks later and I find myself struck mute, throat constricted from a remembered confession and the gratitude of brutal honesty.

As Stephen Shaul says so beautifully:

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

About Us

He (and many others who have said much the same) is right. It was – and will always be – about us. Not just those physically present in the room at The Diabetes UnConference, but the “us” of our community. I’ll talk about the logistics and what worked and what didn’t – but the crux of what made this event so indescribable was the people and their individual experiences.

We are more than our diabetes, more than our diagnosis, more than our desires for a cure… but if we don’t discuss day-to-day living and “scary” or “taboo” topics with this chronic disease through deep, meaningful interactions (whether online or face-to-face), we run the risk of feeling isolated and disenfranchised.

1436965_20488329The Diabetes UnConference came out of a personal desire to create a safe place for these discussions – and an even more personal desire to push past the superficial connections that are sometimes created (not through anyone’s fault, but the way the Internet works…) online. When we walked out of that room a few weeks ago, were connections made that will take root and inspire others to be more open about living with diabetes and connect in new ways? Time will bear witness.

I know that I’ll be able to talk with greater clarity about what happened and what we are going to do next because of what happened, but for now, the cocoon is still woven tightly around me. I am comforted by that and I’m not ready to let these emotions fly just yet.

 

Stolen Words from Octavio Paz

While I can’t yet talk about it, this aptly describes how I view what occurred…

a crystal willow, a poplar of water,

a tall fountain the wind arches over,

a tree deep-rooted yet dancing still,

a course of a river that turns, moves on,

doubles back, and comes full circle,

forever arriving:

– Octavio Paz, “Sunstone”

1188980_19108234The poem is about an individual’s quest for connection and community and the loneliness that one can experience without it. (If you’ve never read it, be forewarned. It’s 584 lines long, representing the number of days it takes Venus to orbit the sun. It begins and ends with the same stanza above. This monumental work is beautiful and haunting and worth every line.)

The takeaway of the poem and The Diabetes UnConference is simply this:

we need each other. 

Whether it’s at The Diabetes UnConference or in local face-to-face meet-ups or in welcoming online community sites like TuDiabetes.org. We must create these spaces and throw open the doors to those who need to talk, all the while respecting the sanctity of what needs to be discussed

There will be a 2016 Diabetes UnConference.There will continue to be opportunities for more individuals with diabetes (and those who love us) to have heart-to-heart conversations and build new circles that grow, welcoming new and brave souls to share and teach us. I hope that smaller versions of what we began in Vegas will pop up in a local meet-up. I believe it can be done.

What did I learn (although perhaps, I always knew in my heart)?

Our community needs to have sacred spaces and full circles. We have deep roots and we will dance together. And most importantly…

We are forever arriving:

 

Diabetes & Taxes

90376_1582Death, taxes… diabetes. We’re all certain that until there is a cure, we’ve definitely got diabetes and have to pay our taxes (at least in the United States). Don’t we already bleed enough?

When you have a very expensive chronic illness (hint: diabetes is a very expensive chronic illness), it pays to be prepared when it comes to doing your taxes and squeezing every dime out of your medical deduction. You need to begin the hunt for your expenses – and the receipts for those expenses.

Topic 502 of the IRS is all about Medical and Dental Expenses. We all need to know about this topic. Here’s the deal if you itemize your expenses on your 1040:

For years beginning after December 31, 2012, you may deduct only the amount of your total medical expenses that exceed 10% of your adjusted gross income or 7.5% if you or your spouse is 65 or older. The 7.5% limitation is a temporary exemption starting January 1, 2013 to December 31, 2016 for individuals age 65 and older and their spouses.

It Pays To Itemize

It pays to itemize. Seriously. Plain and simple: we spend a lot of our diabetes care, but we don’t think about all of the items. (And a lot of the time, we don’t keep the receipts…)

I’m telling you this: start now. Even if you didn’t keep the receipts from last year, start collecting. If you’re high tech, scan them in somewhere. Take a picture of your receipts and put them in a file on your computer. Heck, get a folder and put it next to your keys and put any receipts that can be included as medical/dental expenses into it. Find a system that works for you. But start now.

Ground Rules

I AM NOT A TAX PROFESSIONAL. Oh, please. I have a BA degree and a MSc. degree, neither of which is in accounting. You know (hopefully) by now how much I do not like math. I use a bolus calculator for a reason. I have wonderful friends who are CPAs. Do not look to me for tax advice. Do not look to me as the shining pillar of how to do taxes. I am many things, but I am not a tax professional nor am I perfect. (I am The Perfect D, but…)

I’m not giving you the entire list of what are considered acceptable deductible medical expenses. If you want the whole list, you can get it from the IRS website.

Here are the ground rules for what you can deduct:

  • You can only include the medical expenses you paid during the year and you can only use the expenses once on the return.
  • If you got reimbursed for any medical expenses, you must reduce the expense by the amount you were reimbursed.

For instance: You paid a doctor $120 for an appointment in May of 2014, sent the receipt into your insurance, and they sent you a check for $100 in December of 2014. You can then only claim $20 for this 2014 expense on your taxes, because you paid only $20 to see the doctor. 

What You Can Deduct If You Have Diabetes

Deductible diabetes medical expenses may include (but are not limited) to:

Your payments to your healthcare team: physicians, CDEs, nutritionists, dietitians, psychiatrists, psychologists, endocrinologists, nephrologists, podiatrists, cardiologists, physical therapists, chiropractors, and “non-traditional medical practitioners”, including acupuncture for smoking cessation, and massage therapists when used for a medical condition.

Your prescriptions/insulin. Anything that you have a prescription for, you can list as a medical expense. And… even if you don’t have a prescription for insulin, it’s still a medical expense that is covered. That includes your pump and all supplies. Your insulin pens and syringes and cartridges. If it helps you get the drug into your body, it’s a medical expense that can be deducted.

Your meter and blood glucose testing supplies. (These are diagnostic devices and therefore, covered. Same goes for your CGM and sensors. Ketone test strips (urine or blood).

291573_5192Your medical supplies. Yeah, you’re thinking, of course. But medical supplies include: alcohol swabs, IV Prep 3000, Band-Aids, etc.

Your eyeglasses or contact lenses. If you have contact lenses, you can deduct the cost of the enzyme cleaners and daily cleaning solutions. Don’t forget to include your eye exam, even if it was a refraction/non-dilated exam. That’s included.

Dental treatments at the dentist’s office, including cleanings and fillings. (You cannot expense floss, toothbrushes, or toothpaste.)

Your guide dog expenses, including grooming and food and vet fees. 

Your lab fees. Your ambulance fees or ER fees or hospital stay. All of it is covered. They’ll send you receipts. You’ll weep at seeing how much they charge.

Your lodging for medical care (up to $50 per person per night) (meals not included), if:

  1. The lodging is primarily for and essential to medical care.
  2. The medical care is provided by a doctor in a licensed hospital or in a medical care facility related to, or the equivalent of, a licensed hospital.
  3. The lodging is not lavish or extravagant under the circumstances.
  4. There is no significant element of personal pleasure, recreation, or vacation in the travel away from home.

Your cost of special dietary considerations (i.e. celiac disease – and you must click on that link and read this post from one of my favorite bloggers) or costs for participation in a weight-loss program after an obesity diagnosis) when prescribed by a doctor. Don’t try to deduct health club dues. Nope.

Your admission/registration costs AND travel expenses for a chronically ill person or spouse or a parent of a chronically ill kid to attend a medical conference to learn about new medical treatments. (You can’t deduct meals or lodging while attending the conference.) Hello? Friends for Life? AADE or ADA? Ahem. Deductible medical expenses. Holla. 

Your Electronic Health Records cost to keep all your data in one place. Also known as a “medical information plan” or a “personal electronic health record.”

1442111_98999959Your transportation costs to and from medical appointments/hospitals/medical centers. Don’t forget tolls, parking, gas, oil… Straight from the IRS:

Payments for transportation primarily for and essential to medical care that qualify as medical expenses, such as payments of the actual fare for a taxi, bus, train, ambulance, or for medical transportation by personal car, the amount of your actual out-of-pocket expenses such as for gas and oil, or the amount of the standard mileage rate for medical expenses, plus the cost of tolls and parking fees.

Some of your health insurance premiums. I’m not going to get into this one, as it’s a minefield of what you can and cannot deduct. You need to look at the IRS website on this particular subset.

What You Can’t Deduct

One of the things that I wish could be covered is hypoglycemia recovery supplies (i.e. glucose tabs, juice, etc.). I’m doing everything that I can to keep that cost to a minimum, but really… we all probably spend far too much on that, and it’s not reimbursable. (Not unless you have a prescription written by your doctor for “juice”…)

You can’t deduct the cost of the cell phone plans and minutes calling your insurance company to argue over what is covered and what isn’t.

You can’t medically deduct the cost of your Internet service plan for the time you spend getting peer to peer support online from the DOC.

You can’t deduct the over-the-counter salves and moisturizers to keep our pretty diabetic feet from cracking or drying out.

Hopefully I’ve triggered something in your brain that says: “I can deduct that?! Booya!” Start preparing now for the 2014 tax season. (I’m quite aware that U.S. taxes are not due until April 15th, but don’t wait until the 15th to think about all the items that you can add together for your medical expense deductions… you’ll get overwhelmed and you’ll inevitably miss something.)

Happy deduction hunting! 

 

 

 

My Affair With Earnest Hemingway…

1336773_53028368My affair with Earnest Hemingway is neither about love, nor about hate.

It is about his paucity of words and the emotions you must mortar into the cracks of his meanings.

It is about his inability to end a story (or even his life) with any hope or joy.

It is about his words that slip beneath my skin to leave me shivering.

It is about how I abhor reading the words he wove together and yet, a quote he gave has shaped my life and aptly explained my last few weeks.

Not Reading It Again

I was subjected to Old Man and The Sea twice in high school, pulling apart overarching themes and writing trite, hackneyed literary criticisms just like every other teenager. Why twice? Three high schools in four years means forced rereading of a few books. (MacBeth was a three time winner – middle school gave me a head start, Midsummer’s Night Dream was also twice, but thankfully, Crime and Punishment and a list of Russian names written down for reference was, thankfully, devoured only once.)

Upon reaching the third high school in January of my junior year, my English literature teacher handed the book we would be reading next. Old Man and The Sea. I handed it right back.

“I’m not reading it again. I’ve read it twice. Hated it twice. Dissected it twice. It’s depressing. Give me something else to read and I’ll do a separate assignment.” (Yes, even as a teenager, I was… is pushy the right word?)

So, my teacher brought in his personal copy of A Farewell to Arms by Ernest Hemingway for me. In retrospect, I think he did it to spite me. “Old Man and The Sea is depressing? I’ll show you depressing.” I read it and neared the end, clutching that tatter of hope his characters created for themselves.

Hemingway is an ASS.

If you were in my neighborhood as I read the last two pages, I apologize for the angry screams of: “COME ON! SERIOUSLY?! Hemingway is an ASS!” I stomped into class the next day, threw the book on my teacher’s desk, and muttered: “This sucked worse than The Old Man and The Sea.”

To this day, I have yet to read any of his other works. Don’t ask me to do so. There are many other pieces of literature that can depress me, but none with the compact, gut wrenching nature of his view on life. I get enough of that already from reality. (Lest you think I like sappy, happy movies or books… I abhor those, too.) One day, perhaps, I will have the strength and resolve to read the rest of his painful brilliance. For now, they wait.

But… he said something that, if I had any desire to tattoo my body, would be inked across my chest:

“The world breaks everyone, and afterward, some are strong at the broken places.” – A Farewell To Arms

COBRA

Over the past few weeks, the world did its best to break us. Two weeks after meeting our high deductible health plan’s deductible, John’s company surprised a few people by laying them off on the last day of October. Surprise! Including John.

All of the benefits: medical, dental, etc. was terminated “on the last day of the month“. That meant that day. My supplies (and new Dexcom transmitter) hadn’t been ordered. And I couldn’t get them ordered in time before the end of the day. OK, I thought. Breathe. I’ll just order them all when we purchase COBRA.

We’ve purchased COBRA before, but when I called to find out the cost, it was outrageous. Laughably outrageous. The representative gave me this advice:

“Purchase everything out of pocket and keep the receipts; if the total for the month was higher than the cost of COBRA, go ahead and pay COBRA and you’ll get reimbursed.”

We started to investigate other options, including Healthcare.gov’s plans for our state and found that those plans were better – and less expensive – than what we were paying if you factor in the high deductible. Yes, I know all about the pre-tax blah blah blah, but it was frustrating to think that we could have avoided the shenanigans with medical decision making this year if we had just eschewed his company’s crappy medical insurance plan and gone with a marketplace plan.

The World Breaks My Technology

A week later, my Dexcom transmitter died. It was a slow death and I knew it was coming, but when it finally shuffled off its digital coil, it was still jarring. It also felt like it said: “HAHA, I knew you didn’t order a replacement before your insurance kicked it!”

I went without, reminding myself that I went without continuous glucose monitoring for years. Of course, every time I checked my blood sugar, all I could think was: “What would the arrow say?” Blood glucose checks increased, but I felt unsure. I felt high, but I was within normal range. I felt shaky, but I was slightly high. Adjust, check, adjust, check. I didn’t trust how I felt. For good reason.

Et tu, Brute?

Then, in solidarity, my insulin pump died. Four weeks and two days out of warranty. I hadn’t ordered a new one because… you know the story. Deductible. Crappy coverage. It happened on a Friday night while I was across the country, but if your pump is going to stop working, it should stop working while you are standing with other Type 1s at the Diabetes Mine Innovation Summit.

“What the hell? I can’t bolus. Look!” I showed the pump to the group and the troubleshooting suggestions started to fly fast and furiously. “Try this!” “Take the battery out and see if it will reset!” “Let it time out and see if that will do anything!”

And then…

“It’s says Button Error.”

The groan was collective. In the fifteen years of pumping insulin, I had never had a catastrophic failure. And of course, with my head being not in the game, when I packed, what was the one thing I didn’t bring? The back up bottle of Lantus. My head started to go down the rocky road of microbolusing or finding an open pharmacy or spending time on the phone with the pump company begging for a loaner when one of the people standing in the group who uses the same pump as I do said something amazing:

“I have an extra pump that I travel with. You can borrow it.”

Do you know how hard it is to program an insulin pump with tears of gratitude in your eyes? Less than an hour after the failure of my pump, I was pumping again. BG upon reconnecting? 126. (I thought I was high. I felt high.)

Fortunately, my blood glucose monitors are holding steady. They obviously hadn’t gotten the memo that John had been laid off.

Suck It, Hemingway

Ernest thrived on making people miserable and ending his stories on a sad, introspective note. I’m no Hemingway (says the verbose woman writing this blog) and so the end of the story will be a happy one.

  • John recently accepted an offer for a better job – better pay, closer to home, doing what he loves.
  • Because I had done homework on Healthcare.gov, I was able to look at the medical insurance offered and decided we would choose a marketplace plan that is more expensive, but has better coverage – way better coverage and NO deductible for durable medical equipment. (I did a lot of homework, calling an insurance specialist and getting the answers about insulin pump and CGM coverage. It does pay to do your homework.)
  • The DOC (Diabetes Online Community) and the diabetes community are filled with amazing people. A friend sent me her transmitter and a few sensors to tide me over. I have had many others offer to help with supplies. I am a firm believer in paying it forward, but never expected to be the one receiving.
  • The posts I wrote about U.S. financial assistance and programs for people with diabetes and if you are a Type 1 without insurance  was meant to help others… but I reread my own words. Twice. Maybe three times. And unlike Hemingway, those words and programs that companies offer gave me hope.

So, Hemingway. You’re right… about (at least) one thing.

The world does break us all. And I am stronger in the broken places.

But unlike the old man and a solitary trek into the ocean to battle marlins and sharks and the metaphors meant to taken from your work, this part of my story ends on a happy note, filled with helpful people and a community that does what it can when it’s needed.

The End