“Where’s the damn cable that works with this? ARGH.”
John hands me one after another as I clumsily attempt to connect the correct USB charger to my Dexcom receiver. We’ve got lightning cables, USB micro cables, USB 3.0 and 2.0 cables strewn all over our house. We’re a wired family. We even have a cable “coffin” where older, no longer needed cables reside (but we won’t throw them away, because you.never.know.).
My diabetes exhausts me sometimes and not just physically or mentally. With the technology available these days to us, I have now added mechanical to my list.
The mechanical tools I use to manage my diabetes include: iPhone, iWatch, insulin pump, continuous glucose monitor and glucose monitors. I’m like an electrical junkie that’s always looking for a fix. (My friend, Briley, once snapped an image of me after I got out of my car. I was charging my Dexcom through the car adapter and forgot to disconnect, shutting the door on the cable.)
Much like our community’s desire to have a universal uploader and standard operability for our devices, I wish that the world would just settle on one charging method. My phone connecter won’t charge my watch and the watch connector won’t charge my Dexcom and my Dexcom charger won’t charge one of my glucose monitors…
I am on a constant quest for power to charge/recharge these devices and when a get a notification that one of these devices are low on juice, it triggers a tiny anxiety that grows until I get connected to a power source again. These tools help me to manage my diabetes but along with alarm fatigue (when you hear the beeps and buzzes so often that you begin to ignore them, to your own detriment), I’ve come to realize that these devices are also creating a type of exhaustion that I can’t seem to quit. It’s mechanical.
Of course, you’re telling me that I could just stop using the devices. Sure. That’s an option. And I also know that the next generation of devices may have better battery reserve capacity and my quest for power may not send me into a tizzy. I made the choice to use these devices, but sometimes the side effects include exhaustion. They don’t list “mechanical exhaustion” on the warning label.
But I know that I’m not alone. It’s much like the feeling you get when the alarm on your pump tells you that there’s a finite amount of insulin left in it. You’ve got to add that to the list of other things in your life.
What would you do to help keep the mechanical exhaustion at bay? I’d love to know. In the meantime, I’ll be carrying around four different cables, looking for a place to plug in to stay healthy and on top of my diabetes.
Please excuse the insensitivity of this rant, as it’s full of first world complaints. I recognize that for many individuals, access to these devices are impossible, improbable, or downright unaffordable. As a family, we’ve made decisions to pay for these tools, eschewing other “luxuries.” These tools are my family’s luxury, as John feels that having me healthy is a necessity.
My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)
I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.
I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.
Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)
Now re-read those first two paragraphs.
I Don’t Expect You To Know…
I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.
All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?
“What do you mean the ER nurse didn’t know what a CGM is?”
“The optometrist asked you what your blood sugar was this morning?”
“The doctor wanted to take your insulin pump off in the hospital?”
“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”
“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”
We are the experts…
We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?
This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)
We have a choice…
When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them.
“The ER nurse didn’t know what a CGM is?”
Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.
“The optometrist asked you what your blood sugar was this morning?”
Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)
“The doctor wanted to take off your insulin pump in the hospital?”
If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology – and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation – a two-way conversation – and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.
(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)
When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.
We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to usto be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.
We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?
My tolerance for ineptitude is miniscule. I wouldn’t consider it a character flaw. (It’s inherited. Genetic. My father has the same tolerance level.) I’m all for giving people breaks if they are new to a position or might be having a bad day, but if the inability to fix a problem for a client is written (in invisible ink) into a company’s mission, there’s a serious issue.
Insurance companies have a lot of serious issues. I paint insurance companies with a broad brush because while there is always an exception to the rule, I have yet to turn to someone after getting off the phone and say:
“Wow. They’re the best insurance company ever. I’ll be a loyal customer until I die!”
Because they don’t want you to be a loyal customer. They want you to leave when you start to have complications or get serious illnesses. They all hope you’ll be another company’s problem by the time that happens.
You’re technically not even a customer; you’re a subscriber. (Unlike a newsletter or a magazine subscription, you’re not subscribing voluntarily.) You’ve “chosen”” ::cough cough:: a particular insurance company, but really it’s your employer in most cases that does it for you.
Side note: Most employers don’t care about the fantastic experience you’d get from the insurance call center or if you have to jump through rings of fire for durable medical equipment. They want to check a box for the government under ACA (although some companies are happily paying the fine) or add “we offer a medical plan” to potential job prospects. (I think all job descriptions should include a URL to the medical plan they offer, but that’s just me being efficient.)
Insurance companies are not altruistic. They are not charities. They are not there to help you. They are businesses. Businesses that have profit margins and bottom lines and investors. For years, they did everything possible to avoid having chronically ill individuals on their plans. These days, they can’t avoid us. We’re here.
But they are not making it easy for anyone these days to get answers. Or help. They think we’re just going to eventually give up.
My latest foray into the seventh circle of hell (which is reserved for insurance companies) had nothing to do with diabetes (except that it was fun to watch the Dexcom graph rise while I was on hold and seething…), but it did prove to me that sometimes, you have to say that you’re just not going to take it.
The Never Ending Story
I had COBRA for two months while John switched to a new position, waiting for his company’s healthcare plan to kick in. I had a Continuation of Coverage certificate, showing the dates of COBRA coverage. COBRA was through the same company as the healthcare insurance company, just a different department. And that’s there the problem started.
COBRA had put in the wrong date (off by one day) for the end of my coverage. Of course, I had two doctor appointments and lab work on that last day, so the bills came in from the providers. I called the insurance company.
Them: “You had no coverage on that date of service.”
Me: “I have a Continuation of Coverage certificate from your company showing that I did. I’m happy to fax it over to you.”
Them: “We can’t receive faxes. You need to contact COBRA and have them change the date. Then you can call us back and have the three claims reprocessed.”
I called the COBRA department. It was a “data error” and they would update my file to show the correct date.
Them: “It should take just a few business days for the correct data to be updated throughout the system.”
It took five months and over 11 hours on hold/discussing/explaining over and over/cajoling/pleading with both the COBRA department and the insurance company (They are the same company. I can’t stress this enough.) and the date finally got straightened out.
I was told it was fixed by COBRA and that it was the insurance company’s fault for not updating. That excuse was used twice, but then a third person admitted that they hadn’t submit the data change after three weeks and two phone calls. I was told that there was no single point of contact for either company to handle the escalated (by now) issue. I was told that they couldn’t make any outgoing calls and that I couldn’t get a phone number to call anyone. An email? ::insert evil laugh:: Silly woman.
I thought it was fixed. I was told it was fixed. After five months, it was over. Hot damn and hallelujah.
I received a dunning letter from a provider, threatening collection and damage to my credit. Originally, the claim was paid. The insurance company’s “claims recovery” department has asked for the payment back and was not releasing the request, despite the correction of the date. Could I talk with anyone there in the claims recovery department? No. Could I send documentation showing the coverage date? No.
Could I pay the bill to the provider? Yes.
I thought about it. Thought about how I was exhausted, fighting against a company I paid a lot of money to receive benefits that weren’t being given. I was tired of the tinny on-hold music that became the soundtrack of my days. And then I decided I wasn’t going to take it. At this point, I had clocked over 13 hours on this mistake that was not my fault.
Filing A Formal Complaint With The State
I filed a formal complaint against the insurance company with my state. Uploaded my documentation and did it online. I used the word “ineptitude”.
On December 23, almost eight months after the date of service, I got a phone call from a “member advocate” of the insurance company. He was “calling to help me resolve the issue”. He admitted that he was calling because I had filed the complaint with the state. Can you imagine what would have happened if I hadn’t formally complained to the state?
Those of us with diabetes understand that we have to work with constricted formularies, certain types of pumps and meters, get letters of medical necessity and write appeals.
We can choose to wait on hold while Mozart Muzak drones off-key or we can say that we’re not going to take it anymore.
If You’re Having a Problem With Your Health Insurance Company
If you’re having an issue with your insurance company not paying claims for services, not providing documentation for denials or appeals, here are my recommendations:
Document everything. Hint: Get a notebook just for insurance calls.
When the representative comes on the line, ask for their name and identifying ID. Write it down along with the time and date of the call (and even the length of time the call took, if it tickles your fancy).
Be respectful towards the representative, who isn’t the individual deciding on your claim status or your appeal or denial.
Have your claims documentation at the ready, because they’ll always ask for information.
If you’ve got an issue that’s been going on for a while, allow the representative to take a moment or two to re-read the notes. This will save your breath.
Ask for an escalation if you’re not getting anywhere. There are “escalated claims specialists” that will magically appear on the line who can give you (at the end of the call) a different number to reference as part of the escalation.
Give them time to work the issue, but hold them to the timetable. Some issues are complex, but others should be resolved quickly.
If you have an issue with a provider being paid properly, work with the provider. (They all have resources and recourse against the insurance company, so two heads are better than one.)
As of today, my issue still isn’t resolved. Why? (For those of you playing at home: these people all work for the same company. Just different departments.) The member advocate gave me this excuse:
“I can’t get in touch with anyone in the claims recovery department. I’ve called a few times. I’m trying to make sure they have all the documentation they need so they can stop the request for the refund.”
It’s his turn to sit on hold for a while. I’m not going to take it anymore.
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.
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.
If 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…)
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.
(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.)
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.
(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.)
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.
Insertion device for your Medtronic infusion sets = $26.20
Serter devices for your Medtronic sensors = $25.00/$14.70 (depending on the type of sensor you use)
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
Those 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…).
(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
(This is an add-on device that caregivers/loved ones can use to view the graph/numbers on the receiver in another room.)
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.
mySentry Outpost (this allows you to see data from the Medtronic pump/sensor in another room) = $500.00
Blood Glucose Monitors/Test Strips
According 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!
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
Some 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:
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:
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
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:
If you have already purchased a pump and a Dexcom, the out of pocket costs would be:
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:
(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:
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?
Without 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?
If you don’t know this by now, I’m here to tell you.
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.