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.
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.
The 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,
- Octavio Paz, “Sunstone”
The 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:
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, 2021 to December 31, 2020 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.
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).
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:
- The lodging is primarily for and essential to medical care.
- 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.
- The lodging is not lavish or extravagant under the circumstances.
- 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.”
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!
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
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!”
“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.
In less than twenty-four hours, I will be surrounded by my tribe.
Friends for Life, the premier conference for families with Type 1 children (and some of us Type 1s who are children at heart), is going on in Orlando for the next few days. It’s the one conference that no one will ask you if you can eat that, look at your pump and wonder aloud if it’s a pager, or want you arrested if you say you’re high and pull out a needle.
The tribe grows larger this year. I’m honored to be on a morning panel for the first ever Diabetes Advocates MasterLab - a full day session discussing the importance of advocacy and how everyone touched by diabetes can be an advocate. What’s special about this is that we’ll have Type 1 and Type 2s together, along with the parents and grandparents of Type 1s (with some of them being Type 2s themselves). The more encompassing the tribe is, the more powerful it becomes.
For as horrible as this disease is, there is comfort in the solidarity of the tribe. Complete strangers give knowing nods in passing, acknowledging green bracelets signifying Type 1 diabetes on each others’ wrists. When a Dexcom trill goes off in a room, twenty people look down to see if it’s theirs. Someone has a low blood sugar? A torrent of glucose tabs rains down upon them.
There is such comfort in being with others who understand the silent wish as a meter counts down to a number. There is such joy in celebrating the new, squishy babies of T1 moms. There is even such pain as the tears flow when a fellow T1 speaks aloud your innermost fears. We are bound together by blood. And nonfunctioning pancreases.
The dream of The Diabetes UnConference came out of last year’s attendance at Friends For Life. I learned so much, but it was the moments of “life discussions” outside of the meeting rooms that sparked so much of what has now become a part of me. This year’s Friends For Life will continue to be a catalyst in how I live and be an inspiration of who I want to be.
I am eagerly awaiting the open arms of the tribe that no one ever wanted to join.
Diabetes is not a contest.
There are no grand prize winners, no consolation prizes, and no picking what’s behind Door Number 2. You can dress up in a silly costume, but a game show host will not be selecting you to jump up from your seat in the studio audience.
And yet, I see that some people with diabetes trying to make it seem that way on social media.
I belong to a number of groups on Facebook that focus on diabetes. Some groups provide wonderful articles from reputable sources while others, promoted as a place of support, are crammed full with pronouncements and requests for advice.
“What’s the highest your blood sugars have ever been?”
“What’s your lowest recorded blood sugar?”
“How much insulin do you take each day?”
These are questions that pop up frequently on my newsfeed and the answers are almost boastful.
“I take 150 units of Novolog every day…”
I’m curious as to why these people ask (and answer) these questions. Is it because they feel the need to compare themselves to others with diabetes? Are they better than others? Worse off?
Diabetes is not a contest.
Yes, sometimes we play the “Guess my blood sugar!” game with a friend or family member. (John always wins that one in our house; I think he cheats.)
We take bets daily on which dosage will be the right amount to keep blood sugars within range. Sometimes we take a chance with our blood glucose meters. I’ve played chicken a few times with my diabetes management, and I’ve always come out the loser. Some are diligent and still come out losers. But it’s not a contest, right?
We may try to game our disease, but there are too many slots on the roulette wheel to say for sure where that ball will land… and you know that the house always wins in the end.
And in the end, the quality of life for all of us is compromised because of a disease that doesn’t let us win, but we do get to have the play at home version as a lovely parting gift.
Diabetes is not a contest.
There are no right answers. No buzzer at the end of the round with commercials from our sponsors.
Every individual with diabetes is different and while some may be coherent (barely) at 35 mg/dl, others may have long lapsed into unconsciousness. Those wandering upright with highs over 500 mg/dl are not to be scorned or lauded; they need help to bring their blood sugars back into range. It doesn’t matter if you take one unit or 1,000 units of insulin per day - whatever you need to keep you safe and alive is what you need.
I have never hid my A1C struggles. My current is 6.7%, up from a low of 6.3% last year. I don’t get a medal for that, just as I don’t get a medal for the A1Cs in the teens during my high school years. My A1C is a signpost and I have a choice to make every day on how I handle my blood sugars and my diabetes.
Some people with diabetes share their A1Cs in an effort to show others that they’ve been working diligently at making positive changes in their lives. These PWD talk about those positive changes, giving their take on their own struggles. I love reading these posts, because this is the reality of diabetes.
Those who, and I’m judging a little bit here, boast about how they’ve never had an A1C over 6.0% because they take care of themselves… well, I can do without the gloating. (And they seem to never give the “how” of how they keep it at 6.0%, more of a “I just follow the rules…”.)
Diabetes is not a contest.
It’s not a reason to get incensed when an unsuspecting stranger makes a comment that blatantly shows they do not understand the nuances of the disease and its many iterations. I see these posts far too often:
“How dare they tell me that I can’t eat [insert food here]! They don’t get it at all!”
“That mother has NO idea how difficult it is to parent a child with diabetes!”
“I hate that the public thinks we all have Type 2 diabetes! I want to change the name so that they will know it’s different!”
Well, this is, as a former supervisor would say to me, “an opportunity to excel”. Turn the rage into a teaching moment. Rather than getting all indignant and stirring up others who feel like we’re misunderstood, take a moment and breathe, then say:
“Diabetes is a complex disease. There are different types and different ways to treat the disease. If you have a moment, I’d love to tell you a little bit about it, so that you can help others learn.”
And you can change the name of a disease all you want… it will still be the same disease with the same misperceptions. You’ll just spend more time hollering into the blackness about how the name is different.
Diabetes is not a contest.
It doesn’t matter in the end what diabetes you have. There are preconceptions and misconceptions about both types from the general public and even from within the diabetes community. Have you seen these quotes before?
“That person asked me if I have the bad kind of diabetes!”
“She told me that my diabetes must be severe if I have to take shots!”
“Type 1 diabetes is far more difficult to manage than Type 2!”
“Type 2 is an obese disease. Type 1 isn’t.”
Long term, we all are hunched over from the weight of complications that pick at every part of our bodies. Our pancreases don’t work properly. All diabetes is bad. All diabetes is severe. All diabetes is difficult to manage. And guess what… both types of diabetes can be “obese” diseases.
I am living proof that you can be fat with Type 1 diabetes. I know many people who are thin as rails with Type 2.
Why are we trying to prove to ourselves and others that one type of diabetes deserves more pity or money or time or effort or public awareness?
Diabetes is not a contest.
It’s a disease.
No one wins.