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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Surviving a Holiday – T1D Style

Thus begins the season of extra stress, extra meals, and wondering how I managed to plunge through 150 units of insulin in 2 days flat.

It’s the HOLIDAYS!

And if you are celebrating Hannukhah, you get double the celebration today and tomorrow.

With all of the home-made goodness, piles of appetizers, and a litany of desserts, carb counting becomes damn near impossible a challenge. And it’s not just the variety of food that’s available with my family – it’s the amount. Seriously – Thanksgiving is an ordeal. We invite 30 people, but we cook for 50 and for whatever reason, everyone feels inclined to also bring a dessert. It really doesn’t make sense. But – I press on anyway. Usually avoiding my mom’s latest Pinterest find.

So what to do? Well, let’s start with the basics. This really cool infographic got tossed around on Twitter by Glucolift (and was created by Tandem Diabetes Care.) Give it a whirl.

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Not a bad place to start. But it’s missing the appetizers, wine, beer, cupcake turkeys, y’know… what really messes with your carb counts and makes you wonder why you suddenly have 15 active units in your system by the time dinner rolls around.

Here’s my plan – For appetizers, I try to stick to the veggie platter and dip. I’m trying this recipe instead of buying regular ol’ Ranch. Since it has avocados, I’m hoping it’ll fill me up faster so I don’t sit in front of the appetizer table and fill up before dinner actually starts. I just have to watch the carrot intake and I’m good.

For dinner? I’m actually not a huge fan of Turkey by itself. On a sandwich with cheese? Fine. Alone? Nope. But you kind of have to eat it on Thanksgiving. Then I load up the plate with salad, because salad expands and takes up a ton of room on a plate, thus leaving zero room for not so D-friendly items. (Like cheesy casseroles, mashed potatoes and whatnot.) I also don’t like Stuffing, gravy, and certain vegetables. (And definitely not the canned cranberry sauce.) See? Being a picky eater has its benefits! I just avoided a crap ton of carbs right there!

Dessert time! I’m usually too full to stick try and stuff more food down my throat. But if I have room, a sampler plate is generally the way to go. Or I share with my husband. Small tastes of everything are a lot easier to manage than trying to eat all the pie, cupcakes, cookies, candy… yes it’s ALL there!

Or I’m nursing a glass of wine for dessert. Either or. (Alcohol intake and your D may vary.)

So – there you go. A mini survival kit for your holiday experience. Have a wonderful Thanksgiving and thank YOU for following along!

Friday Five: WDD Aftermath Edition

Happy Friday. Hope you are still wearing blue today. 🙂

1) A friend of mine is hosting an all girls slumber party this evening. Complete with adult beverages and junk food. Super fun, right? Made me remember some of the sleep overs I didn’t have as a child. I wasn’t actually allowed to spend the night at a non family member’s home until I was in 6th grade or so. Maybe 7th. My parents hosted sleepovers in our own home, sure. But given my late night lows due to the insulin regiment at the time, my parents didn’t feel like explaining it to each and every parent that hosted a sleep over birthday party for their daughter. So I’d stay at the party until about 10 pm, and then my mom or dad would come pick me up. (Just in time for my evening shot before bed.) If they were close, I could re-join the party the following morning.

In a similar fashion, since I have a very busy weekend ahead of me and staying up until 2 am sounds like a bad idea, I’ll also be leaving the party early to sleep in my own bed.

2) I’ve been following the #Dbminesummit tag on Twitter because there appears to be a lengthy, emotional panel on insurance coverage needs for PWDs. More proof that insurance agents have no souls and my chronic condition is just their next cash cow. It’s a bit infuriating. (To put it lightly.) Especially considering the current stance on “health care for all” in this country.

3) Speaking of insurance, the topic has been a “hold your tongue” exercise on my Facebook wall. Sometimes I succeed. Other times I don’t. But anyone who thinks the pre-ACA system was fine is seriously delusional has never had a chronic condition. (And I have the medical bills to prove it.)

4) This post kind of made my day. And this one.

5) One more week until Disneyland.

Where Am I and What Am I Doing Here?

I’ve been asking this a lot.

And I’m sure you have too since I haven’t really posted anything in the last week.

I’m here… mostly. Like many, I seem to be experiencing a bit of an inspirational dry spell when it comes to content. That, and I’m just busy. But not really “fun busy.” The 9-5 job picked up a bit, but it’s simply busy work and herding a few cats that don’t want to be penned up. And since everyone is slammed and traveling, I can’t really justify blogging at my desk anymore.

I had my first real encounter, as an adult, with someone who knows of this great natural remedy/treatment/pill/thing that lowers blood sugar. I can’t really remember the name. It was loud where we were speaking and I kind of tuned out after she said, “you should try this… my husband’s on it.” <sigh> I’ll shelve it with all the roots and cinnamon myths that my parents dealt with when I was a kid.

This was after my rant about how the medical insurance industry is ruining my dreams of working for myself. Or just having decent insurance… which I kissed good-bye today. Apparently, you can’t have COBRA health insurance AND group coverage at the same time. So when my group coverage kicked in on the 1st, my COBRA was deactivated on the 31st. There goes my $1800 deductible. At least Medtronic just kept sending me supplies for my pump without charge for the last 6 months. I kind of have a bit of a stockpile in my home office. But my new insurance is terrible… just… ugh.

It’s also been an emotionally draining week. Between arguing with my mom about whether I should start searching for another job because I dislike the backasswards thinking and the fact that my talents reach beyond being someone’s assistant, but it’ll look bad on my resume. Insulting a close friend unintentionally thus causing me to rethink all of my interactions, both past and present, and wondering if I’ve dug the hole too deep this time. Listening to my husband’s complaint about the local weather and desire to move elsewhere and faintly considering it. Wondering if I’m just an emotional weepy mess because of hormones or stress or all of the above – which means my cycle starts again… and I’m probably not pregnant again… and how much longer do we need to go before we consult a pro?

On the bright side, I did learn today that it’s National Hug Day. Because the interwebz said so and stuff. I’m sure my problems may seem like mindless drivel to others with much bigger fish to fry. So I offer a collective hug to my readers for taking the time to peer into my reality, or, a virtual hug to console you if it’s needed. Or if it’s not needed. Or something.

In Time

Time is a funny thing.

If there is something fun planned for later in the day, time seems to crawl, making the day seem extremely long. This also applies if there isn’t much to do. And when we have too much to do, there doesn’t seem to be enough hours in the day. We are simultaneously encouraged to “live in the moment,” “take time to smell the roses and enjoy,” and “get somewhere yesterday.” Our morning alarms keep us on track as well as provide a hindrance to something more important, like sleep. We are also reminded that we have a finite amount of time to make something great of ourselves, so don’t waste it by being anything less.

As a PWD, time is also of the essence! It’s recommended that we change our infusion sets every three days and our sensors every six. Our insulin, once opened, only lasts 30 days, but its effectiveness is dependent on the elements, and we discover this over time with high and other erratic blood sugar results.

We are advised to wait 15 minutes after treating a low with fast acting carbs, which can feel like an eternity. And we spend another two hours (or two days) reconciling the inevitable rebound from said low blood sugar. But we can’t over-correct that high blood sugar because our insulin has an active peak time of anywhere between 2 to 6 hours. So that 300 mg/dl is just going to have to wait, isn’t it? (It doesn’t – rage bolus away.)

Our blood glucose meters have gone from taking 2 and a half minutes for a result to 5 seconds or less. Yet we still wonder if the number it pops out is accurate enough to dose a meal we should have bolused for 20 minutes ago.

We have the technology to have our sugars tested every 5 to 15 minutes, but we need to calibrate the technology every 6 to 12 hours to maintain accuracy. Nevermind that we can only calibrate three hours after a meal, when a blood sugar is stable, and when there is little active insulin in the system. So we spend our time planning our calibrations and smack ourselves when we miss the perfect opportunity to do so by about 15 minutes. We also need time to change out sets, sensors, faulty insulin vials, lancets, test and re-test when we don’t like the result… all while being told that there is too much available out there to make diabetes more convenient and we have no excuse to not live our lives like a “normal person” would… except when we try and our A1Cs reflect that.

We spend hours, days, and months fighting with insurance companies to approve the care to give us more time on earth, yet they take their sweet time figuring out if they want to pay for it.

We take risks with time, guessing that 18 units left in the pump will get us through a 10 hour work day… until your co-worker brings in cupcakes. Damn. Let’s not forget about the time and effort required to have a “quick slice of pizza.” Spouse ordered Chinese food on a whim? You’ll pay for convenience later. Or explain, for the third time, why you just can’t partake in it.

We get told that our time will be shortened if we don’t take care of ourselves. That diabetes kills. Yet we see other T1Ds living well into their 90s, which means they began life as a PWD on some of the earliest technology and medical advances available. (Which wasn’t much – but they still survived.) Maybe time really was on their side. Then we laugh half-heartedly at how many times we’ve been told there will be a “cure” in 5 to 10 years, yet wonder if there will one day be any truth to that statement.

We try to manage our time to plan for possible spikes from high-fat meals, over-correction crashes, exercise fall-out, travel, stress, sickness, and well… breathing. But sometimes, even the most neurotic planner can’t expect to time doses exactly to accommodate whatever bricks are thrown at your ideal CGM flatline.

And if we spend too much time thinking about the time it takes to try and be healthy, we kind of go crazy. So we ask for the support of others who advise us to take just one day at a time.

 

 

[Alright, alright, fine… I’ll swim back to the shallow end of the pool next time… ha!]

Saturday DOC Poll

Because I’m insanely curious…

I posted this question on Twitter and didn’t get much response. Probably because Twitter can be a huge black hole sometimes.

But really, what do you do? I’m all about keeping good hygiene, even at 3 am. Plus, waking up with a sour taste in your mouth just sucks.

However, as a young child and was a pro at drinking juice in my sleep via straw, my parents used to just give me water to wash down. Later in life, I’ve had a number of issues with the enamel in my teeth thinning, but I’m not sure if that’s an exposure to OJ acids problem, or a diabetes problem. (Because if I have diabetes, clearly that’s the root cause of EVERYTHING wrong with me, right?)

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My life in 8 Bits

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I’m a flipping video game.

I check my device to make sure my “man” is running in a straight line. And if he’s running down hill, I eat. If he’s running uphill, I hit left>right>up>hold start twice to make sure he comes back down again.

Sometimes I think he’s got a panic disorder because he’ll start screaming and shaking at me because he’s falling down again, when really, I do have enough coins to sustain myself. So I have to wait a few for him to calm down and tell them he’s just fine. The amount of coins we have are actually this number instead.

When he does fall, it sounds like he just got defeated by the fire breathing boss guarding the princess’ castle.

<Beep> <Boop> <Siren!!!>

CGMs are fun.

Like Rearranging Deck Chairs on the Titanic

Last night, I visited an old dance acquaintance who will begin fighting for her life. She was diagnosed with an early form of breast cancer at the age of 30 and she begins an intense round of chemo and radiation next week. The prognosis is good, but reminds us all that cancer can strike anyone at any age. (She’s inspired me to be more proactive about self checking.)

Doning a “superman”shirt, she had her hair stylist shave the remaining short red locks in the presence of family, friends, and co-workers. And in true form, she took part in a round of shots with her friends to celebrate the start of her long journey ahead.

Part of her pre-chemo ritual was getting her hair cut and dyed one last time before it disappeared completely. She shared that she felt like she was “rearranging deck chairs on the Titantic;” or performing an action that seems insignificant or pointless in the grand scheme of things.

I understand why she did it though. Sometimes I rearrange my own deck chairs knowing that it really won’t make a difference later. But it’s oddly therapeutic knowing that I can control this one detail for a brief moment before it changes completely.

What are your “deck chairs?” Have you ever washed a car prior to salvaging it? Painted a room in a building, only to see it scheduled for demolition? Or in my case, baked chocolate chip cookies even though I experienced blood sugars over 240 mg/dl for 24 hours straight?

Actually, my current chair is trying to establish good glucose control before jumping into the hormonal imbalance of pregnancy. But I have had chocolate chip cookie days like that. I’ve had conversations with my CDE about not being able to run at the “pregnancy” standard of control before even getting pregnant. Her reply is that it’ll all change when it gets to that point. So, my reply is “why are we doing this all in the first place?”

Guess I’ll keep rearranging my chairs. Or running on my treadmill.