The Gentle Season

blue christmas ornamentsNot feeling it these days.

The halls may be decked and the menorahs may be lit, but right now, the muttering of humbugs are drowning out the choirs of angels. If not for The Kid, I have a feeling that John and I would be jetting off to parts unknown, sunblock in hand.

Truth be told, it’s been years since I have bounded out of bed during the holidays. Our family dynamics are complicated, and while we love all of them dearly, holidays have become such a source of stress that even without food issues, I’d be cranking up the basals along with the ringing bells.

I’m not even in December anymore, at least in my head. With less than 90 days until The Diabetes UnConference begins, my focus is there. The “leap of doom” that I took this year in deciding to found this conference, starting a 501(c)(3), and scrambling to secure funding has been filled with those 3am “What the hell did I do?” moments.

I’ve had some eye-opening and heart-breaking moments, getting support from where I least expected it (and you know who you are and I am so thankful) (And where I expected it and I am so grateful for continuing friendships…) but then at the next turn being berated by others for not making this event completely free and offering more scholarships for travel and lodging. (Or worse, knowing that some in this community will not attend, because… well…I just can’t get into that right now.) I promised John that this conference would not become a financial burden to our family. I may break that promise this year.

Why do I bother telling you all this? You all have your own burdens. Your own issues.

I am asking you all to be gentle with each other. This needs to be the gentle season.

We are all going to have days (or weeks or months or years) of not feeling it. Don’t heap on what is already a tough psychological trudge by calling someone out for their own blues.

Instead, give.

Give comfort.

Give succor.

Give hope.

Give love. 

It costs nothing to give these things.

For those of us with chronic illnesses like diabetes that can suck the fun out of an average day, being gentle goes to a new level. Be gentle with yourself.

Have an extra helping of your grandmother’s stuffing? Eat a piece of that peppermint bark that has been taunting you? Watch that blood glucose level not bother to creep, but to leap and bound upwards like a goat on meth?

It’s going to be all right. Do what you can. Acknowledge that being perfect doesn’t exist, but working towards keeping in range does, and take the steps slowly. But take the steps forward. And be gentle with your steps.

I thank each and every one of you for reading the thoughts I share with you. For sharing your thoughts with me in emails and comments. For being a part of the community that no one wants to be a part of and one I adore so desperately. 

Be gentle. This is the gentle season.

Every season should be the gentle season.

Much love,

Christel

 

#Giving Tuesday – More Than One Way To Give

The diabetes community has something in common besides malfunctioning pancreases*: our giving nature.

*I prefer pancrei, but Webster’s would probably laugh at the petition.

We do it all year round and in many ways: Spare A Rose, Save A Child; JDRF and ADA Walks, volunteering time and talent to projects like Nightscout (CGM in The Cloud) and Tidepool, sharing knowledge and much needed support through non-profits like Diabetes Hands Foundation and diaTribe (who is celebrating their First Anniversary as a non-profit!) and much more.

So, it seems strange to ask you to donate today, because you already do so much to help others in our community, but here I go, hat in hand (but a lovely chapeau it is, bedecked in feathers and a wide brim)…

Whether it is a few minutes or a few dollars, please consider helping these worthy causes today:

It costs you nothing, but the addition of your voice is priceless.

We have two days left to tell the FDA that patients should be involved in every discussion, at every level, when it comes to the devices we use to keep us healthy and safe. Go here, read the easy steps, and add your comments to the FDA docket. (It closes December 4th, so giddy up, cowboy.)

I’m truthfully astonished to see how far the diabetes community has come in the last year, rallying to ensure the FDA understands how important our opinions matter. They’ve been stellar at recognizing and working with us, but there are no resting on laurels, because while we know it and some forward-thinking individuals know it, not everyone does. Until there’s a cure, all we have is our voice. Give it today.

You’re Going To Shop, So Might As Well Give At The Same Time

Full disclosure: When I’m not being a rabble rouser or loving on my family, I’m the founder of The Diabetes Collective, Inc., which is a recognized 501(c)(3) non-profit organization, created to fund programs like The Diabetes UnConference. There are so many wonderful non-profits out there that focus on living well with diabetes, so why create one more? Because there wasn’t a program designed to bring all adults with diabetes together to share their thoughts and get support in a safe environment. In order to make that happen (and some other things that will be coming after the first Diabetes UnConference is in the bag), The Diabetes Collective, Inc. was founded.

The Diabetes Collective, Inc.

Amazon has a program called AmazonSmile and you can select The Diabetes Collective as your charitable organization.

“The AmazonSmile Foundation will donate 0.5% of the purchase price from your eligible AmazonSmile purchases. The purchase price is the amount paid for the item minus any rebates and excluding shipping & handling, gift-wrapping fees, taxes, or service charges. From time to time, we may offer special, limited time promotions that increase the donation amount on one or more products or services or provide for additional donations to charitable organizations.”

There is NO additional cost to you. The prices on Amazon are the same as if you are shopping without the AmazonSmile selection.

Please consider helping this way by choosing The Diabetes Collective, Inc. as your non-profit organization and help support the scholarships we provide to bring people with diabetes together to have the discussions they can’t have with their doctors or family.

If You Got a Penny or Two to Share…

You can donate directly to The Diabetes Collective, Inc. by clicking on the button below or on this link.  It will take you directly to a secure PayPal checkout.

un-diabetes-conference-fullcolor-h

This is a tax-deductible donation so you’ll get a tax receipt from The Diabetes Collective, Inc. for 2014. Any amount will help.


But I also want to direct you to another amazing opportunity that is near and dear to my heart: The Bionic Pancreas.

You can donate (and it’s tax -deductible) here:

GoBio_Fundraiser_thumbnail_260x202

There you have it. Three ways to give: no money, giving through shopping, and giving through tax donation. Do one, two, or all three.

Wait. Stop. There’s one more way to give.

You can share this post with your friends. Your family. Strangers on the street. Tell them about how important a role diabetes plays in your life (even though you don’t want it to…) and how they can help you and millions of other people. (And if you don’t follow this blog on Twitter or Facebook, please do! I’m funny on all sorts of social media avenues!)

So, give. Whether it’s your time, your shopping acumen, or with a financial gift. I adore you for even allowing me to put it out there.

Give what you can.

Do what you can.

And we are grateful.

How Much Do Diabetes Supplies/Medications Cost in The U.S.?

batch of dollarsWhile everyone’s diabetes treatment plan, medications, and technology may be different, there is one thing we can all agree on: diabetes is expensive. In two previous posts at The Perfect D, I gave some sense of what the bare minimum of care for a U.S. adult with Type 1 diabetes would be and also financial resources and programs to help with the financial burden of living with diabetes.

However, this post is about how much it could cost an adult with Type 1 diabetes if they used the technology and medications that are currently out on the market (and thought of as “the latest and greatest”) and paid out of pocket with no insurance. Research on this topic has shown me that: 1) prices can fluctuate wildly, so it pays to shop around and 2) there is a very big gap (financially, medically, and technologically) between the bare minimum and “surviving” and actually utilizing the tools and latest technology that is out there.

So, the hypothetical person for this exercise is a Type 1 adult in the United States who weighs 60kg, just like the other calculation post I did.

Ground Rules

  • These prices are accurate on the websites I have referenced for December 1, 2014. They may change, they may add shipping, they may not offer the services, technology, or drugs on their website after this is posted. These prices are not a guarantee. They are to be used as a reference.
  • The listing of prices/websites on this post does not mean that I endorse the company or product or service.
  • I have not listed all the products available on the market for people with Type 1 diabetes. I have listed major ones to give you an idea of major manufacturers’ costs for the products that are available for general public viewing.
  • I did not call any companies and ask for pricing. Why? Because I believe that we, the diabetes community, should be able to really know how much something costs without having to go through hoops and customer service/sales representatives. Device prices should be listed on a company’s website, knowing that insurance pricing will be different. (We should be able to know how much a drug would cost without insurance, too.)
  • Some of the items are only dispensed with a prescription.
  • Yes, I know that some people with Type 1 do not use an insulin pump. In fact, only 30% of Type 1s use a pump for insulin delivery. Some are happy and do well with MDIs/pen needles. The cost of pen needles are comparable to using a syringe, so you can refer to this post if you want to do your own calculations. As I say, my blog, my words…
  • I used averages. That means that some pump therapies may cost more or less than the average.

Insulin

mediumIf you take a total of 30 units per day (hey, adjust for more or less, this is a hypothetical Type 1 adult weighing 60kg), you will take about 900 units per month. You might be able to get by on one vial a month, but this doesn’t factor in correction boluses that might need to be raged to bring down a high blood sugar or a heavy carb meal. So…. two vials per month.  If you’re on a pump, it’s two vials of fast acting. (Don’t forget that you’ll need that back up prescription for long-acting insulin if your pump malfunctions…)

Fast-acting:

Apidra vial 10ml = $177.59

Humalog vial 10ml = $217.45

Novolog vial 10ml = $210.49

Average cost per month (insulin pump): $403.68

Average cost per year (insulin pump): $4,844.16

Average cost per month (MDI): $201.84

Average cost per year (MDI): $2,422.08

Basal/long-acting:

If you aren’t on an insulin pump, T1s must use a long-acting insulin in conjunction with their fast acting. This hypothetical (hopefully not hypoglycemic) T1 would use one vial of fast-acting and one vial of long-acting insulin per month.

Lantus vial 10ml = $284.39

Levemir vial 10ml = $216.69

Average cost per month (MDI): $250.54

Average cost per year (MDI): $3,006.48

(So, for those of you keeping a tally for comparison,  the total cost per year for insulin using a pump is $4,844.16 and for MDI, it’s $5,428.56.)

Insulin Pumps

800px-Early_insulin_pump

This is an early version of an insulin pump. You’d never get a button error with this. Dials!

You know that some of these prices may not be the price you actually pay if you have no insurance. You call the manufacturer and explain that you will be paying out of pocket and ask what the “cash pay price” would be and if they have a financing program. (Some companies offer this; others do not.) But these prices are what’s shown on websites where you can purchase them….so ta-da.)

Most pumps are under warranty for four years. Some have upgrade programs. Others have a “trade your old pump from another company and we’ll give you a discount…) Do your homework before committing to a pump. Please. Some will let you test drive. Others have a return in 30 days policy.

Minimed Paradigm Real-Time Revel 723 Pump = $5655.99

t:Slim Insulin Pump = $5720.00

Omnipod = $800 for the PDM, which is the brains of the pod. The pods are extra. ($337.00 per 10 pod box and 12 boxes needed annually) = $4844.00

Animas Ping = $4977.29

Accu-Chek Spirit Pump = $4,751.07

(I would have added the Asante Snap, but there are no places online to get an actual price. I got estimates from blogs and news outlets that say $700ish, but without a definitive click, I can’t in good faith include it.)

Cartridges

Got pumps? Then you need cartridges. Can’t have one without the other (except if you’re talking the Omnipod, because the pods act as the cartridge and the insertion set.). Cartridges (or reservoirs, if you are Medtronic) are needed to hold that expensive insulin you purchased.

Omnipod = $0.00 because the pod acts as cartridge and insertion set. See below.

T:Slim Insulin Pump Cartridge – 3ml – Box of 10- 10/bx = $46.19

Animas 2ml Cartridge 1200 Pump – 10 Bx = $45.79

Accu-Chek Disetronic Spirit 3.15mL Plastic Cartridge System – Box of 5 = $24.30

Medtronic

Some people change their cartridges once per week, while others change every three days. So, you could use 4 per month or 10 per month.

Average Total Cost per month: $41.39

Average Total cost per year (9 boxes): $372.51

Average Total cost per year (12 boxes): $496.68

Insertion Sets

800px-Infusion_set_3Those pumps and cartridges aren’t enough to get the insulin into your body. You need insertion sets (again, unless you use Omnipod, which are tubeless and incorporate the cannula directly into the pod).

Most people change their insertion set every 3 days. (You should. I don’t judge. Some people change it more frequently, due to inflammatory reactions or the dreaded occlusion.) So, you’ll go through one box per month… if not more.

Most people have a preference of the type of insertion type/tubing length they use. 90º or 30/45º angles, short tubing or long tubing, 9 or 6 mm cannula, metal or plastic… so I’m giving you a few choices. And again, it pays to shop around. Sometimes the manufacturer of the pump is not the cheapest place to get supplies (which confuses me to no end…).

Reference: Omnipod pods (10/box)= $337.00

Inset Infusion Set 23″ 9mm (10/box) = $95.77

Cleo 90 Infusion Set 24″ (60cm)/6mm 10/bx = $112.99

Comfort Infusion Set – Can be used with t:slim, Animas (Box of 10) = $105.99

Accu-Chek Disetronic Rapid D Infusion Sets – 6mm Cannula and 24″ (60cm) Tubing – 15/bx = $94.39

Medtronic

Quick-set 9mm Cannula / 43″ Tubing (10/box)  = $136.70

mio 9mm Cannula / 32″ Tubing CLEAR (10/box) = $151.00

Silhouette 17mm Cannula / 43″ Tubing (10/box) /cannula only = $121.19/$117.30

Sure-T 29g 10mm Needle / 32″ Tubing (10/box) = $94.60

Average Total Cost per month: $101.60

Average Total cost per year : $1219.20

Continuous Glucose Monitor (CGM) & Supplies

Dexcom

Dexcom Platinum G4 Sensors (4/pk) = $349.00

Dexcom Platinum G4 Transmitter = $599.00

Dexcom Platinum G4 Receiver = $599.00

(Remember that you need all three of these items to get your Dexcom to work properly. Start up can be expensive. In addition, the new Dexcom transmitter warranty is only good for 6 months and you will most likely need to purchase two each year.)

Initial/Replacement Cost of Transmitter & Receiver:$1797.00

Cost per month for sensors: $349.00

Total cost per year for sensors: $4188.00

Total Annual Dexcom cost: $5985.00 

Dexcom Share Cradle w/ Free Service = $299.00

(This is an add-on device that caregivers/loved ones can use to view the graph/numbers on the receiver in another room.)

Medtronic

The Medtronic insulin pumps use integrated technology on their Revel and 530G to show the continuous glucose monitor graphs/numbers, so you don’t need a “receiver” if you are using these pumps. You can purchase a receiver to use the Sof-Sensor sensors, but… why? (And I couldn’t find a place to purchase with a price on a stand-alone Medtronic receiver.) The sensors cost are per month, as the Enlites last longer than the Sof-sensors.

Enlite® Sensor (5 pack) – used with the Medtronic 530G pump only = $473.00

Total cost per month: $473.00

Total cost per year: $5676.00

Sof-sensor® Glucose Sensors (10 pack) = $439.00

Total cost per month: $439.00

Total cost per year: $5268.00

mySentry Outpost (this allows you to see data from the Medtronic pump/sensor in another room) = $500.00

Blood Glucose Monitors/Test Strips

1154350_32525829According to the ADA, for Type 1s, self-monitoring of blood glucose (SMBG) is key to diabetes management. They recommend 6 – 8 times per day as a minimum of blood glucose testing. When you read the Standard of Care document, they state:

“…prior to meals and snacks, occasionally postprandially, at bedtime, prior to exercise, when they suspect low blood glucose, after treating low blood glucose until they are normal glycemic, and prior to critical tasks such as driving.”

8x/day minimum = 240 strips per month minimum, so 250 (because that’s easy to purchase in boxes of 50). So, that’s what we are going with, although I know that some people with diabetes use more – and less – than that. We are not going with the bare minimum.

Here’s where it pays to shop around…

Wal-Mart is NOT always the least expensive when it comes to purchasing blood glucose monitors and blood glucose test strips – not by a long shot. Of course, prices always vary given the day, the website, the weather…. you get the drift. SHOP AROUND. (Click the link to be forwarded directly to the website that had the price listed.)

And don’t forget that there are certain meter companies that have “special savings programs“, even for those who have insurance!

Accu-Chek

Accu-Chek Aviva Plus Glucose Meter Kit = $9.97 or FREE.

(Remember, if you use the subscription based Accu-Chek To Program, you get a Aviva Plus Meter for free with your first shipment.)

Accu-Chek Aviva PLUS Test Strips – 50ct = $30.29

Cost per month without Accu-Chek To program: $151.45

Cot per year without Accu-Chek To program: $1817.40

Cost per month with Accu-Chek To Program + regular purchase: $131.77

Cost per year with Accu-Chek To Program + regular purchase: $1581.24

(Remember, if you use the subscription based Accu-Chek To Program, you can purchase 50ct Accu-Check Aviva Plus Test strips for $20.00 and 100ct. for $40.00 per month.)

Accu-Chek Nano Glucose Meter = $5.07 of FREE

(Remember, if you use the subscription based Accu-Chek To Program, you get a Aviva Nano for free with your first shipment.)

Accu-Chek Smartview Test Strips – 50ct = $27.77

(Remember, if you use the subscription based Accu-Chek To Program, you can purchase 50ct Accu-Check Aviva Smartview Test strips for $20.00 and 100ct. for $40.00 per month.)

Cost per month without Accu-Chek To program: $138.85

Cot per year without Accu-Chek To program: $1666.20

Cost per month with Accu-Chek To Program + regular purchase: $123.31

Cost per year with Accu-Chek To Program + regular purchase: $1479.72

Abbott FreeStyle

FreeStyle Lite Glucose MeterFreeStyle Freedom Lite Glucose Meter = $10.09

Abbott FreeStyle Lite Test Strips – 50 ct. = $46.99

Total cost per month: $234.95

Total cost per year: $2819.40

Bayer

Free Bayer Contour Next Meter  – shipped by Bayer to you. $0.00

Free bayer Contour Next USB Meter – shipped by Bayer to you. $0.00

Contour Next Link Blood Glucose Meter = $89.00

Wireless communication to Medtronic devices enables fast and easy bolus dosing and continuous glucose monitoring calibration
• Built-in USB cable has pass-through feature to allows for easy downloading to Medtronic’s convenient online CareLink® Personal software

(Bayer Contour Next Test Strips (box of 50 strips on Medtronic’s website) = $52.00 BUT THIS IS WHY YOU SHOP AROUND…)

Bayer Contour Next Test Strips – 50ct = $19.09

Total cost per month: $99.95

Total cost per year: $1199.40

LifeScan OneTouch

OneTouch Ultra 2 Glucose Meter Kit = $19.88

OneTouch Ultra Mini Glucose Meter Kit = $17.63

One Touch Ultra Blue Glucose Test Strips – 50 ct. = $74.99

Total cost per month: $374.95

Total cost per year: $4499.40

OneTouch Verio IQ Glucose Meter Kit = $29.99

OneTouch Verio Sync System Kit =  $29.99

OneTouch Verio IQ Gold Test Strips – 50ct = $90.89

Total cost per month: $454.45

Total cost per year: $5453.40

But We Aren’t Done Yet

If you’re on an intensive management plan, then you’re strongly encouraged to have a glucagon kit available in case you have a severe hypoglycemic reaction. This item isn’t cheap.

Glucagon Kit = $213.69

220623_1002Some people with diabetes on intensive management plans (those who are on pumps, microbolusing with flex pens, and/or CGMs are considered intensive management therapies) often see an endocrinologist and other specialists. You might need to include these in your team:

  • Endocrinologist/CDE
  • Cardiologist
  • Podiatrist
  • Nephrologist
  • Neurologist
  • Ophthalmologist/Retinal Specialist
  • Orthopedic specialist/surgeons

These specialist costs are higher than just seeing a regular general practitioner. Some by hundreds of dollars. The tests that may be prescribed can cost thousands of dollars out of pocket (say the word “nuclear stress test” and shudder when they tell you what it costs).

For reference, I see a retinal specialist for a dilated eye exam follow up every six months: $335.00 without insurance. My annual cardiologist visit is $430.00 without insurance for the (literally) five minutes I talk with him, including the pleasantries. One orthopedic surgeon office visit was $295 while the second opinion office visit with another surgeon was $180. As with everything else, shopping around if you have no insurance, especially when it’s diabetes related, is necessary. 

Then there are the additional medications that might be needed: statins, blood pressure medications, medications for neuropathy, kidney disease, etc. These are too numerous to mention (and quantify), but you know that these are additional costs. Most people with diabetes wouldn’t be taking these medications if they didn’t have diabetes.

In a previous post, I mentioned the costs for treating mild hypoglycemia, for lancets and alcohol swabs, for the little things that all add up. The purchase of a juice/glucose-heavy item at a convenience store because you are low is a cost, but rarely factored in. Parking at hospitals for appointments. Tolls. Wear and tear on a vehicle as you travel to see various physicians to stay healthy. Batteries for the gear that isn’t rechargeable.

So, if you are truly calculating the costs of the latest supplies, technology, and treatments, there are items that you don’t even think about… the small ticket items that leech money from your pockets. They can add hundreds of dollars to the existing cost.

Let’s do some math.

If I am a T1 adult with no insurance who uses Humalog in a new Animas pump and a new CGM Dexcom, checking my blood glucose with a One Touch Verio IQ meter, it could be:

$23,348.47

If you have already purchased a pump and a Dexcom, the out of pocket costs would be:

$16,574.18

If I am a T1 adult with no insurance who uses Apidra in a new Omnipod and a new CGM Dexcom, checking my blood glucose with an Accu-Check Nano meter, it could be:

$14,439.80

If you have already purchased a pump and a Dexcom, the out of pocket costs would be:

$11,842.80

If I am a T1 adult with no insurance who uses Novolog in a new Medtronic (not 530G) pump and Sof-Sensor CGM, checking my blood glucose with a Bayer Next meter, it could be:

$16,917.27

(The price would be greater with the 530G pump and the Enlite CGM sensors.)

If you have already purchased a Medtronic pump with CGM integration, the out of pocket costs would be:

$11,261.28

That’s not counting the physicians (multiple visits), the labs, the other tests that you might need, the glucagon, the back up long-acting insulin, the small items, etc.

That’s just for the technology, supplies, and insulin analog.

Are You Getting What I’m Saying Here?

994448_53508805Without insurance, it is unlikely that you have thousands of dollars under a mattress for this type of intensive management. Even with insurance, many of these items can be cost-prohibitive, with deductibles to be met each year and percentages paid out each month to durable medical equipment companies and pharmacies.

This is not meant to shame medical device manufacturers and pharmaceutical companies. I’ve said before that they are not charities; they’re businesses and they can choose to set their prices and work with insurance companies for discounting.

Who loses in this scenario are those who want the technology but do not have an insurance company adept at bargaining or adept at meeting customer (that’s the subscriber) needs. Or those who don’t have insurance at all and fall into the gap of making too much to qualify for assistance programs but not enough to pay out of pocket for these items.

When someone asks a person with diabetes if it’s a hard disease to live with, they’re often asking about the physical aspects of the disease. Very few people outside of the community understand the financial burden many families face if they want what is the BEST technology and treatment for the person with diabetes.

Until there is a cure (be it biological or otherwise), this is the financial cost of living well with diabetes. Insurance companies can blunt some of the cost through their collective bargaining agreements, but we are still paying through premiums and deductibles and, in some scenarios, an inability to choose the medications or technology that they want, because of contracts.

There is no grand “THE END” to this post. For many people with diabetes, this is the reckoning that we do in our heads, wondering if we spend less now, will we pay more later? The answer is almost always… yes, but if we cannot even afford what the best treatments for diabetes on the market, how can we live long enough to get to that “later“?

I have no solutions. This is more of an academic exercise to see if what the statistics touted by the government on how much a person with diabetes pays for care was correct. It’s not.

People with diagnosed diabetes incur average medical expenditures of about $13,700 per year, of which about $7,900 is attributed to diabetes. People with diagnosed diabetes, on average, have medical expenditures approximately 2.3 times higher than what expenditures would be in the absence of diabetes. – NIH

 

We pay much more if we want excellent care. What can be done? Beyond a cure? I don’t know. Do you?

 

It’s Black Friday. And I need your help.

theperfectd:

You know how I do my “Two Minutes of Diabetes Advocacy”? Stephen just did it for all of us today. Please read and take your two minutes.

Originally posted on Diabetes Blog - Happy-Medium.net:

Did I say I need your help? In fact, we need your help.

For the next week, the U.S. Food and Drug Administration has a docket open, waiting for public comment from you and me and anyone else living with or affected by diabetes. What makes this docket unique is that they are actually asking us to weigh in on how we want to be included in the review of diabetes devices and drugs. Can you believe it?

From the FDA’s official docket:

The Food and Drug Administration (FDA) is announcing the establishment of a public docket for comments on FDA activities performed under the Food and Drug Administration Safety and Innovation Act (FDASIA), Patient Participation in Medical Product Discussions. This notice announces FDA’s intent to gather input from stakeholders on strategies to obtain the views of patients during the medical product development process and ways to consider patients’ perspectives…

View original 698 more words

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