Young and Sick

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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The Cost of a Chronic Illness – Tuesday 5/16

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?  (This topic was inspired by suggestions from Rick and Jen.)


Alternate title: how to piss off the entire diabetic online community on a Tuesday morning. (#thanksjen)

It’s no secret that having diabetes is expensive. It’s also no secret that no one in public office seems to understand that chronic conditions are usually the result of drawing a genetic short straw. I mean, check here, here, here, and here for examples from our elected (and appointed) officials.

For me, it’s the difference between being a stay at home mom, freelancing or working part time, or being a full-time working mom. I have a job with rare, excellent coverage and I have little to no complaints about my medical benefits. I have both individual and dependent premiums covered 100%. (I pay for it by not getting annual raises and a relatively low wage for my job description – but, win some, lose some.) I often go through scenarios where I opt to pull Bean out of daycare because I don’t think it’s worth my paycheck – then I realize that I’m probably also saving about $1200/month by getting insurance from my employer. With the legislature now rolling toward a repeal of the ACA that would effectively double the cost of any individual insurance plan for us, I will be staying at my job until I’m 70. In lieu of paying for individual medical insurance, I’d like to retire comfortably, save for an emergency and Bean’s college fund, pay off our mortgage, stay out of credit card debt, and a litany of other things other than a new iPhone every year.

 

How insurance companies see me.

My voice is one that Congress needs to hear the most. My experience as someone who is young and sick differs greatly from someone approaching the Medicare age. I am a middle-aged adult in the middle class with an invisible illness that requires high-cost, around the clock maintenance. My income disqualifies me from most drug rebates and assistance programs. However, I don’t just have $10,000 per year lying around. Obviously, we are smart enough to cut non-essentials to keep the insulin flowing, but at what point do you deem retirement and fiscal responsibility a non-essential?

But, if you listen to news coverage or our public officials, our stories are seemingly left out of the conversation. I’ve been trying to think of ways the health care conversation would be different if the “young and sick” had seats at the table. Several things would need to be accepted beforehand:

  1. That not all chronic conditions are the result of lifestyle choices.
  2. That medical costs not only are a drain on those on fixed incomes later in life, but also hinder the choices young people make about their futures.
  3. That those younger will effectively pick jobs or careers based on benefit packages offered by an employer.
  4. That chronic conditions don’t benefit from catastrophic coverage alone.  
  5. That a majority of Americans are one diagnosis away from medical bankruptcy.

It’s hard to get anywhere because the current conversation revolves around Americans obtaining affordable health insurance and confusing it with getting affordable health care. Until we can accurately address the rising costs of medical care with our legislature, we will continue to fight the wrong battle. Have you considered looking up the Diabetes PAC?

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Diabetes is a Cranky Toddler

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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Diabetes and The Unexpected – Monday 5/15

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?  (Thank you, Heather, for inspiring this topic!)


We hear the narrative from a variety of sources – Control your diabetes better with XYZ diet. Avoid complications and medications with better control. Your diabetes is out of control. You have great control of your diabetes. Your fetus depends on having the ultimate control of your diabetes.

Of some of the most candid advice that I’ve read in the diabetic online community, what has stuck with me the most was this: “Diabetes, by definition, is not something we can just control. At best, we can only manage it and hope for the best outcome.” So really, diabetes is a cranky toddler.

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No, really. In the present moment, there is no better comparison to diabetes than dealing with a toddler who is in serious need of a nap. Have you ever tried to reason with a fussy toddler? It’s damn near impossible.

I mean, I can try to negotiate with diabetes. Just a few more units of insulin will bring you down… No? How about a new infusion set? I can attempt to redirect diabetes. If I go for a walk, maybe I can distract this high blood sugar from escalating. I can punish diabetes. Only a 1 unit correction? No way! Rage bolus, activate! I could also ignore diabetes. Oh. 250 mg/dl? Meh.

The reaction is exhausting and leaves me wanting a nap, or a beer, or both. But deep down, I know that this sleepless, screaming, tantrum-ing reaction is temporary. A phase or blip in the grand scheme of things. Addressing the problem with this mindset often helps bring in some much-needed perspective. My diabetes isn’t always like this and sometimes there is no real reason for the less than perfect blood sugars.

Now, if you want something real crazy, you can have both a toddler and diabetes, like I do. This post inspired by the fact that my kid has skipped her nap for the last two days. Oof.

Ignorance is Not Really Bliss

So hey… so much for getting back into blogging after DBlogWeek. Oh well. I’ve been busy buying baby things and reading and counting summersaults in my lower abdomen. But I figure I better check in.

I’ve become incredibly dependent on my Dexcom since becoming pregnant. Dex wakes me up in a timely manner for those middle of the night lows and probably saved me a lot of trouble in DKA-ville two weeks ago when my site went bad. (Got to see Labor and Delivery for the first time… but I don’t recommend doing that to see it sooner.)

Like most PWDs, I order my durable medical supplies from the a 3rd party distributor rather than the vendor itself. (Medtronic seems to be the exception to the rule, however.) So when I was taping on my last sensor in the box, I called my supplier to place a refill order. Supplier said no problem; we hang up the phone and I wait.

And wait. And wait.

A week passes and I don’t hear a peep from UPS, the supplier… nothing. So I call again before the holiday weekend and complain. The clerk apologizes, isn’t really sure what happened, makes sure I have a valid prescription, and sends my order through for approval again with an overnight delivery guarantee.

Holiday weekend comes and goes and nothing has been dropped on my doorstep by the time Tuesday afternoon rolls around. By this time, the tape on my two week+ old sensor has irritated my skin so bad that I’ve disconnected entirely. I call again. Different clerk takes my call and explains my order won’t go through because my doctor on file is located in Montana and I’m in California.

Wait, what?

I attempt to calmly explain that all they needed to do was pick up my order from March, which has the exact same information they need. The original prescription was authorized to give me a year’s worth of supplies, so what’s the problem. The clerk said she’d “leave notes” in my order. Sigh. I asked for a tracking number to be emailed me when the order was approved so I knew when it was done. Again… more notes.

Two more calls finally yield another promise to overnight the sensors to me on a Friday. This time, however, I did receive an email confirmation and tracking number. So I figured I’d be plugged in again very soon – which was great, because I was getting really sick of dropping into the 40s and not feeling a dang thing. (When the kid gets hungry, it eats all my food!) To counter my overnight lows, I woke up twice via alarm to test myself at my most common drop points. I was beginning to think how I survived 30 years without my CGM.

Saturday arrives and I check my tracking number, discovering the package has been delivered! Hooray! I run outside to discover an empty doorstep. Huh? Where are my sensors?

In the off chance that my sensors were delivered to my office building instead, how where they signed for and left at the “front desk” on a Saturday? The office building is closed and can only be accessed via key and UPS typically holds all packages until Monday.

On the phone with UPS now – discover the package was indeed delivered to my office building and signed for by someone I didn’t recognize. Great. Since I’m so desperate for my sensors by this point, I commute to my office. To my dismay, my package is no where to be found and none of the surrounding suites were open to even ask if someone maybe signed for the package and were holding it. So I reported the box lost and/or stolen with UPS but couldn’t get an investigation going until Monday morning.

I continued my weekend Dex-less and frustrated, especially since I saw more 40s and 30s than I wanted to. And when keeping your blood sugars in check is such a big deal as a pregnant woman, you seek comfort in seeing those straight lines and arrows on the Dex. There is only so much information to gain when checking your blood sugar via fingerstick every 2 hours. (Also – not efficient.)

Monday arrived and the package still wasn’t anywhere to be found. I needed to work off-site for the morning, so I alerted our admin to keep an eye out for UPS in case they dropped something by for me. I also got a call from UPS indicating they still had no idea where my package was.

Around 10 am, our admin sends me a text saying someone dropped by my package and it was on my desk. Was it UPS? No – it was dropped off by a woman in another suite who was working on Saturday and caught UPS as they were arriving, signed for the package and held it until today.

…Um.

Does anyone else see anything wrong with signing for a package that 1) doesn’t belong to you and 2) isn’t even going to your suite? Maybe not so much #1 in an office building, but still. Good samaritan or not – it would have saved me a lot of grief if the package was just held until Monday.

After all that madness, I’m finally plugged back in and feel better sleeping at night. Of course, today wasn’t without calibration errors and the three question marks of doom. But that seemed to be just misbehavior and not an indication of a bad sensor and site.

I guess from here on out, I need to order my sensors when I have two left in the box…