Diabetes Blog Week Tuesday: The Cost of a Chronic Illness

Today’s prompt is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

For those of us living in the US, this is a hot, scary and depressing topic, especially considering current political climate and escalating insulin prices. Living with diabetes is expensive! In our family, we have three people living with chronic illness. We spend thousands every ear on medication, medical appointments and supplies. And we have good insurance! And don’t even get me started on the price of gluten-free food. I think I will save that rant for a separate post.

Once upon a time, before T1D and before we had kids, hubby and I tried a high-deductible plan. At that time we were pretty healthy, so we figured it was worth a shot. It was definitely a lot cheaper than a standard plan. Turned out that getting reimbursed for our upfront expenses took a really long time. They lost just about every claim we submitted. We eventually got our reimbursements, but knowing that we would have to front a significant amount of $ for even basic medical care really deterred us from seeing doctors. Thankfully nothing bad happened that year, but I clearly remember postponing appointments just so we would not have to deal with costs. How that we live with T1D and other chronic illnesses, I can’t imagine having to deal with a plan like this again. And yet, many people have to.

What advice do I have to share? Is moving an option? Somehow the rest of the developed world figured out how to provide affordable quality healthcare to their citizens.

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For those of us staying put, we need to organize and educate ourselves. First and foremost, do you understand the terms of your health insurance? How much is your monthly premium? Do you understand that the monthly premium does nothing except providing you with access to insurance, and that you are going to incur additional out-of-pocket costs? Do you know the difference between annual deductible and annual out of pocket maximum? What is your individual vs. family deductible? When does your deductible re-set? Do you know the difference between co-pay and co-insurance, and when you are charged one vs. the other? Are your medical supplies covered under pharmacy benefits or Durable Medical Equipment (DME)? What Rx is on the formulary and what meds won’t be covered? Do you have a separate deductible for your pharmacy benefits? Do you know who the in-network vs. out-of-network providers are? Do you know what procedures and equipment require pre-authorization? How often? How much is your ER copay?

Second, you need to advocate fiercely. Don’t take “no” for an answer. If you get a denial, appeal. Work with your doctors to document medical necessity. Learn the language, what to say, how to say it, and who to say it to, to get better results. Ask for help from your device reps – they often know how to get through the hurdles.

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Third, be strategic. We try to schedule medical appointments and supply orders strategically in the beginning of the year so that we can meet our family deductible spending the least amount of money possible. It worked well last year. This year it was a total fail. A similar strategy may work well toward the end of the year. If you met your deductible, and especially if you hit your annual out of pocket maximum for the year, stock up on those medications and supplies. Squeeze in that extra doctor’s appointment if you can/need to.

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Our little stockpile. Note the adorable doggie photobomb 🙂

Fourth, I’d tell you to be financially prepared and set some money aside for healthcare expenses. But I won’t tell you this. BECAUSE IF WE ALL HAD ENOUGH MONEY TO SET ASIDE TO PAY FOR OUR EXPENSIVE HEALTHCARE, MAYBE IT WOULD NOT BE SUCH AN ISSUE?! Yes, I just yelled. It makes my blood boil when some people insinuate that people with chronic health conditions don’t prioritize their healthcare expenses and instead spend money on stupid and unnecessary things. You know, like shiny new iPhones.

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Fifth, pride is stupid. If you need help, reach out. I belong to a vibrant and awesome group of local T1D families. At times people post on our Facebook page asking for a vial of insulin or some test strips to tide them over until their authorization goes through, or their insurance kicks in, or they get their paycheck. Other times people post giving away extras they no longer need. I’ve been on both giving and receiving end. Most T1D peeps will gladly help you out. I personally sleep a lot better at night knowing that if we are in a bind, I know who to ask for help.

Sixth, do your part in educating others about T1D and what it’s like to live with a “preexisting condition.” Help people understand the cost for someone with T1D just to stay alive. Your story and your voice matter. The better everyone can understand the human side of the cost of healthcare, the more we can achieve.

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Diabetes Blog Week Monday: Diabetes and the Unexpected

It’s time for 8th annual Diabetes Blog Week! Thank you Karen of BitterSweet Diabetes for putting this together.

I need this #DBlogWeek badly. I haven’t been blogging much lately. I’ve been overwhelmed by various things in my life and blogging/social media presence/diabetes advocacy has taken a backseat. I am hoping that this week will provide an injection of fresh motivation and inspiration.

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The best way to prepare for the unexpected is to expect it. Ideally, you become clairvoyant and can accurately anticipate all future problems. In reality, we all learn from our mistakes. The main lesson I learned (or rather am continuously learning ) from my mistakes is to not leave without any supplies that we cannot do without for more than an hour, no matter where we are going, how close to home we will be, etc. We always carry extra supplies with us, except when I get stupid and forget about this rule. Like that day when I took V to her Endo appointment and didn’t bring her diabetes backpack. And of course her insulin pump’s pod failed there. Thankfully they were able to hook us up with an extra pod and a vial of insulin, though for a few minutes they worried that they ran out of spare pods. Or the time when I took V to a traveling swim meet 2 hrs away from home and decided to leave her Zofran behind. Because why all of a sudden would she get a stomach virus? Of course, she was hit with the worst stomach virus I’ve ever seen, and we were stuck overnight in a hotel room in the middle of nowhere, with V violently vomiting several times per hour, hardly able to keep any liquids down.  And the battery in the ketone meter was dead! We narrowly avoided a trip to the ER, only because I was able to find batteries for the ketone meter in a store nearby and my husband was able to drive to us and bring Zofran.

Cue our last vacation. I wrote earlier about the hassle of packing all diabetes stuff, or “diacrap”, as Rick aptly suggested in his comment. I packed enough pods for daily changes. Of course, who would expect that a pod would fail every day? They are supposed to last at least 2-3 days. Nevertheless, I was not taking any chances. Sure enough, we had to change a few pods in rapid succession. One day involved two pod changes in 3 hours.

The truly unexpected part? One of the pods could not handle all of the vacation excitement and fell apart. Like, literally. It was quite amazing. These things are bomb proof. They are sturdy, waterproof, designed for all kinds of abuse, and if anyone ever tried to break one apart to see what’s inside, they will testify that it is not a simple tasks. And yet, while the bottom part was still attached to V’s arm via adhesive, this happened…
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What on Earth caused this? We have no idea. We are sending this pod back to Insulet for them to examine and figure out. Perhaps it could not handle the excitement of the FlowRider?

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And here is a close-up of what a broken pod looks like. You are welcome 🙂

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Diabetes Awareness Month, Day 29

Today was the day I rage suspended. Yep, I’ve created a new diabetes term of endearment. Rage suspend is the opposite of rage bolus. It means cutting out insulin completely and for longer than one hour after relenting lows in an angry attempt to stabilize BG. It usually results in high BG a few hours afterwards.

We’ve had a few days on a low side. V has been complaining of some mild GI symptoms – tummy aches here and there, no appetite, feeling tired. When my child is not hungry you KNOW something is wrong. She is always hungry. And when she has any kind of GI upset her BG tends to crash hard. This time BG lows are mild and protracting, just like her GI symptoms. She’s been hovering around 60s and 70s, with a couple of dips into 50s and 40s. We’ve been having great difficulty bringing her above 90. We had her sip on Sprite quite a bit. Today Dexcom would.not.shut.up. It kept alerting and alerting and alerting. It’s set to alert at 75 so that we can be proactive about lows, even though we are perfectly comfortable letting her ride out the 70s as she feels quite good in the 70s range. But today she was dipping in and out of 70s so much, and Dexcom kept thinking she was mostly in the 60s. We made her drink more Sprite and eat more food. Good luck forcing food down V’s throat when she’s not hungry because she’s not feeling well. At around 4 PM I forced her to take a couple more bites and cried uncle. We suspended insulin delivery for 1 hr. After one hour was over she was still hovering in low 70s so I said what the hell, and suspended for another hour. BG finally started to climb up. So I guess mission accomplished? Except she’s still climbing up, 184 as of this exact moment. But I’m reluctant to give her insulin because I don’t want her to crash at night. Again. (Did I mention she was 40 last night at 11 PM?) Stupid diabetes. Damn if you do, damn if you don’t.

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Diabetes Awareness Month, Day 12

Good sick day, bad sick day.

Well, there is no such thing as a good sick day. V has a cold. The combination of stress on the body, inactivity, and who knows what else, is not kind on BG. Yesterday was not too terribly bad, actually. Today, despite feeling better, BG decided to revolt and stay in high 200s and beyond most of the day. Stupid diabeetus.

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The battle of the Nutcraker, T1D edition

What is it about special events that compels me to mess with pump settings more adventurously than any other time? Perhaps it’s remembering that it won’t be a fun experience for anyone if the CGM loudly alarms in the middle of a performance? That it would be a real pain in the neck to rummage in the backpack in the dark, check BG and treat a high or a low? Or that it would be nice to avoid having to deal with Diabetes for a couple of hours or so and just enjoy the show? Well…HA.

V and I head out to watch the Nutcracker. It’s a fun girls afternoon out for us, we are all dressed up and excited. We pull into the parking spot and I have V check her BG. She is high, well over 300. It’s been a weird day from the morning, we can’t seem to beat BG into submission no matter what. She is at the tail end of a cold, which exacerbated her normally very mild asthma, so she was recently put on a different inhaler, and we are pretty sure it’s finally caught up with her and is wreaking havoc with BG. I look at the numbers, cringe when I think of CGM alarming in the middle of the ballet, and go for the rage bolus. I override the pump and administer 1.5 times as much insulin. But wait, I don’t think it’s enough. I increase her basal rate by 50%. That’s ought to do it. V will be sitting down for at least two hours, so even though it’s a  lot of insulin her BG should just normalize, and there’s not a change she’ll drop too much or too fast, I think. We haven’t been able to make a dent with less aggressive measures all day, so what could possibly go wrong?

We get into the theater and find our seats. I keep an eye on the CGM. She’s a hair under 300 and going down fast. Success! Or not? The show starts. It’s time for me to put the CGM away, relax and enjoy the ballet, right? Yeah, right. I have to keep an eye on that CGM now, because she’s still dropping, and fast. So far so good, she could stand to lose nearly 200 points. But things are unfolding rather quickly. By the time the party scene is over she’s under 200 and still dropping fast. By the end of the battle scene she’s under 150 and still dropping fast. Quickly I cancel the increased basal rate but it’s too late. The rage bolus is doing its thing and BG continues to go downhill. Snow scene, she’s fast approaching 100 and still dropping fast. By the time the first act is over she is under 100 and still dropping.

Intermission could not have come at a more perfect time. We get to the lobby and test. 82 and still going down, although not as fast as before. Whew, this was close, and V is excited that she gets a treat out of this ordeal. I get in line for concessions and procure a bag of peanut M&Ms. By the time I have it in my hand, CGM is alarming low like crazy. Yes, Deckie, we got it, we are on top of it. V is feeling fine and we are armed with candy. She gets about half of the bag, which is about 15 g. of carbs. CGM continues to alarm and bottoms out at 52. By now we know it’s a waiting game, it takes good 10-15 minutes for the sugar to absorb and even longer for CGM to catch up to the fact that BG is stabilizing.

We get back to our seats for act two. I continue to periodically glance at CGM and am reassured when it shows that BG is stabilizing and gradually going up. By the time the show is over V is back to about 140. That was quite a glucocoaster.

And by the way, before the second act started I finally remembered that CGM alarm can be set to vibrate only. Duh.

Ready for Nutcracker!

Ready for Nutcracker!