More than a Diagnosis

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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More Than Diabetes – Friday 5/19

Let’s wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)


The first post of the week I don’t have all queued up. Oops.

So, it’d be silly to not mention that I’m a ballroom, latin, and swing dancer. I mean, I’ve written about it a few times.

But besides that, I’m also:

A mom to a strong-willed toddler.

A wife to a supportive husband.

A daughter to some of the best parents on the planet.

A loyal employee and client manager.

A reliable friend.

A closet Disney fanatic.

A musical theater lover.

The worst cook on the planet. (But I make up for it by baking.)

A hyper-organized party planner.

Pinterest-obsessed.

A perfectionist.

A former choir girl.

Stubborn as fuck.

A lover of all things coffee.

A fan of a good craft beer.

A seeker of nuanced political conversation.

A decent photographer and graphic designer.

Obsessed with understanding social media dynamics.

Easily hooked by a good dystopian novel.

And lastly, not just a pre-existing condition.

An Argument for Spoons

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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Throwback Thursday: What Brings Me Down – Thursday 5/18

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)


I often refer to spoon theory when it comes to breaking down the mental side of living with a chronic condition. If you aren’t familiar with spoon theory, it’s basically how much energy I can devote on a daily basis to all aspects of survival. E.G. diabetes, working, parenting, etc.

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Most days, I fortunate to have enough spoons to complete my daily responsibilities. Some days, I’m pulling the energy from my ass and I barely make it through until my child’s bedtime. I won’t bother opening a bottle of wine on those nights because that would require me to 1) open a bottle and 2) calculate the effects of one 4 oz glass of wine on my current blood sugar with the amount of insulin I have on board. (See, not worth it.)

The most trying days are usually when I can’t seem to get my toddler and my blood sugars on coordinating breakdown schedules. Bean seems to know when mommy needs juice or a snack and it’s precisely when the whining starts. Usually, my husband is around to soothe the toddler while I retreat in my haze. But, since lows happen whenever they may, sometimes we are at the store, in the car, anywhere inconvenient.

The worst are the sustained lows that take forever to recover. I often feel like I can’t address my daughter’s concerns or problem, no matter how trivial, if I’m too busy pulling myself out of a low.

And I get it. Taking care of myself means I’m a better parent. No one wants a car crash. She’ll understand later. But there is something disheartening about listening to your child cry while waiting for those numbers to creep up. The screams are louder. The insatiable hunger is more intense. The urgency is greater but I’m at the will of my own body’s response. It’s unnerving.

I usually end those days with -3 spoons left at my disposal – usually sitting on the couch aimlessly flipping through social media or watching recorded television. And those spoons don’t come back. I can’t bank them and save them for a bad day. I start the next day with the same amount of spoons as the previous day. Rinse. Repeat.

Not all days are like this. Most days, my daughter is a gem and I have great support at home. Most days, my blood sugars behave. Most days, I have spoons to spare. The challenge is not focusing on the days I lose all of my spoons, but it’s hard to just not give a fork.

Blame it On The D

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 Blame Game – Wednesday 5/17

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)


I feel like this topic could be an extension of yesterday’s post. After all, isn’t the crux of the whole healthcare debate whether or not we made some bad life choice and therefore got diabetes as a result? The moment I mention I have diabetes, the questions start. Is it bad? Can you eat that? Why don’t you just exercise more? Why aren’t you fat?

The questions were more prevalent when I was pregnant with Bean. I remember going to an open interview event for local doulas. By the time we got to the meet and greet portion of the afternoon, I experienced a whole lot of side-eyes and strange questions from a group of women supposedly interested in lifting each other up. This wasn’t to say all of them were like this – the two who had worked with T1 patients at my hospital just weren’t available on my due date.

I had meet & greets awkwardly cut off because I was apparently delivering at the wrong hospital in the area (it has a level 4 neonatal unit and is one of the best children’s hospitals). I wasn’t really high-risk (pretty sure diabetes classifies you as a high-risk pregnancy). I probably didn’t love my MFM and I should try a family practice physician instead (um, no, I love my MFM because she lets me do what I want and family practice would just refer me there anyway). Oh, and the kicker – is my child going to have diabetes too? (Sigh, no. She has just as much of a chance of developing it as your children do.)

Needless to say, I didn’t hire a doula and the experience soured me to ever seeking out their services for any future pregnancies. There isn’t anything wrong with wanting to use a doula during the birth process, but I didn’t see how she could have helped me in my unique situation. You could see it during the meet and greets; the minute I mentioned I had a high-risk pregnancy, the shields went up.

I don’t blame them for being scared to take me on as a client, but I would have appreciated the honesty over the judgment. A simple, hey, y’know, not sure if I’m the gal to work with you because I don’t know a whole lot about your condition would have worked better than doubting I actually had a condition.

Also, now I have this song stuck in my head…

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?

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.

Why Not Just Test?


I’ve gotten lazy.

Not to the point that my A1C is out of range, but I’m using the Dexcom as my blood glucose monitor a little too often.

And who wouldn’t – especially when there is a five-alarm high (literally) at 2 am and bed is too comfy to bounce out and finger stick. Especially since the FDA recently approved (eh, sort of old news now) the Dexcom G5 readings to dose insulin.

My issue is that my Dexcom has never accurately captured blood sugar readings over 220 mg/dl. (Maybe once in a blue moon… or on day 8 of a sensor life only.) I will hang tight at 210 mg/dl, stable, and unwavering. But a fingerstick will yield a very different (usually higher) result.

This needs to be taken into consideration with middle of the night dosing. I have been having issues with my bedtime snack bolus (if I have something) and crashing at midnight. Enter midnight juicebox. (And I do get up and test for those.)

Juicebox rebounds and my alarm sounds at 2 or 3 am with a high BG alert. I’m mad for several reasons: 1) it’s the second time tonight I have been woken up; 2) I’ve been skirting my high alarm threshold for several hours; 3) I’m definitely higher than what my Dexcom is telling me.

But rather than treating that 195 mg/dl accurately and having some semblance of a good fasting blood sugar, I opt to treat the 160 I woke up with. And then wake up two hours later needing another correction. This probably could have been avoided if I just got up again and verified the correct blood sugar.

And yes, I’m overanalyzing 35 points difference in my blood sugar and being annoyed by it.  Sigh.

Start Over

For the first time in a while, I actually feel compelled to write again.

I recently saw an ad for 2017’s Diabetes Blog Week dates. Then got a bit depressed that the prompts were not ready. (I know they won’t be for a while, but given how long it takes to write posts over here…)

I have several ideas to tie up loose ends I started last year – just need to sit down and write.

Until then…

Happy New Year

<blows dust off blog>
<coughgagcoughhack>

If I’m blogging, it must be a slow work day. So, you can understand why I haven’t blogged in a while, right? I mean, I could resolve to blog more for the new year, but resolutions are usually broken by mid-February and I don’t like the sound of that.

There is quite a bit going on, all-inclusive, featuring my health and the health of others, dance, my closet (ha!), my family, and spending habits. I spent the last half of 2016 rather lost and I didn’t want to write meandering diatribes here while I figured my way around them. Some might say I’m still lost, but I’m enjoying the scenery a bit more.

I took the mantra, “only write when you feel inspired” a bit too seriously. I had blips of ideas for blog posts during that time, but never got around to writing them. Also, joining a competitive dance team eats up whatever spare time I may have left after my day is done.

I’ve been following the D-community on Twitter to keep a faint pulse on what is happening in that part of my world, but I’m not as in tune as I once was. There is quite a bit going on, so me keeping a faint pulse on the news is more like sitting in a soundproofed room with a rock concert occurring next door – you can still hear the bassline. My main interests have been (now definite) healthcare dismantling reform and insulin/supply costs. So, see… rock concert.


Like most people do, I set up some goals to accomplish during this year. As I was finishing up listening to this week’s edition of Pantsuit Politics, the hostesses closed out the show by sharing their assigned Word of the Year. One hostess has chosen one word to define the entire year ahead of them and then makes goals or lives her life with a focus on that word. For example, one year’s word was “Simplicity” and the goal was to cut out unnecessary items from life. Given my list of goals for 2017, I’ve decided to chose a word myself: “Sustainability.”

The word sustainability automatically triggers a lot of “green” and “eco-friendly” practices and memes for people. This was part of the reason I picked it, but I’m not in the mindset to fall off The Grid and live off the earth alone. (I wouldn’t survive long.) But, can I change things in my life that will sustain my dance hobby – like stretching regularly and becoming more flexible? Can I sustain my income by not shopping as often or dropping stupid purchases? Can I sustain my health by drinking more water, finding a new endocrinologist who I actually like,  and reaching out more to others with my health condition? Can I sustain my relationships by dropping a line to an old friend or having more date nights with my spouse? And yeah – moving toward a less “plastic-dependent” lifestyle and whatnot.

So my plan for this blog is to try and document my year with this word, which, I know, is a bit different than the original premise of being a “d-blog of a dancer.” But, I still hope you find this spot on the internet entertaining and worth reading, even if I’m not dancing as much.

DBlog Week: Misc. Mom Hacks

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Today’s Topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I don’t have too many “pin-worthy” hacks to survive as a T1; particularly ones that are deemed medically sound. (Such as refilling my pump cartridges before the 3-day mark, rage-bolusing, how to use the same lancet for over a year…)

But I have plenty of mom with diabetes suggestions that will keep both me and Bean happy while out and about. (There are also five of them – so, Friday Five!)

  1. Currently pregnant? Here is a link to a sample of a birth plan I wrote for a medicated birth with possible c-section option. Use the template to build your own.
  2. If you are breastfeeding a new baby, keep all of your “one-handed snacks,” juice boxes, and water in a “station” where you prefer to breastfeed at home. I have a few more tips here.
  3. Your strip container, glucose tablet roll, and/or your Dexcom receiver make awesome distractions/toys in a pinch.
  4. Most likely, you will pack two of the same snack while out on the road. This will save a lot of time during a meltdown or hypoglycemic event.
  5. I wear a lot more dresses now. I love my Girly Go Garter (reviewed here) to wear my pump and keep my Dexcom receiver near by while wearing dresses. This also hides my pump wire much better. (Less pulling, getting tangled in toddler feet, etc.)