Friday Five: What I’m Reading

narrative-794978_1920

I received notice that my dance team is taking a break for the summer, so I have this insane amount of “free time” in the evenings for a couple months. And I say “free time” because I am too tired to do anything productive. Toddlers are exhausting.

Reading wasn’t always a pastime, especially if I danced six days a week. However, since that has slowed down, I need more productive things to do in lieu of scrolling through Facebook all night.

Here is what I’m currently reading, have read recently, or have in my queue to start.

  1. Life Is Short, Laundry Is Eternal: Confessions of a Stay-at-Home Dad by Scott Benner. Scott is one of our own DOC members, but I’ve never picked up his book until now. His viewpoint on D-parenting is spot on — all while bending gender norms. The couple chapters on Arden’s diagnosis hit me hard, as I would expect them to, and shed some more light into caregiver struggle.
  2. Bright Spots and Landmines by Adam Brown. Another one of our “own.” Adam just published this book and is offering a free/name your price PDF download via DiaTribe. The proceeds go to the DiaTribe Foundation. Or you can pick up the Kindle or Paperback version for next to nothing. I enjoy personal accounts rather than clinical accounts when it comes to diabetes, so I’m looking forward to this one.
  3. Oh Crap! Potty Training: Everything Modern Parents Need to Know to Do It Once and Do It Right by Jamie Glowacki. Not a diabetes book, but definitely a parenting book. Bean is just over two and a half and started showing interest in using a potty a couple months ago. I didn’t follow this method to a tee, but I tried to stay as true to it as possible (like ditching diapers cold turkey) and I return to it when we are struggling. We aren’t there yet by any means, but the intent is there. Potty training sucks, though.

  4. The Handmaid’s Tale by Margaret Atwood. I haven’t started this one and I’m trying to prep myself for it. I never read it in high school (could have been the whole Catholic school thing…) I know it’s dystopian fiction, but I just feel like I’m going to be extremely pissed off and uneasy through the process. Nothing changes by being comfortable, right? And no, I don’t have a Hulu subscription, so I’m not watching the series. Would prefer to read it first.
  5. Strangers in Their Own Land: Anger and Mourning on the American Right by Arlie Russell Hochschild. I’ll be honest – I finished this up about a month and a half ago, but I’m adding it because even I can’t realistically read five books at a time. In a search for more nuance and understanding of people I don’t agree with politically, I picked this up based on the recommendation from the podcast I listen to. This book, while a struggle to not to scream at every person interviewed, attempts to empathize with citizens residing in the deep south. Great for exiting your echo chamber if you swing leftward.

Happy reading! Enjoy your weekend.


Disclosure: There are affiliate links here. Clicking and purchasing the items listed do provide me a small commission. All thoughts are my own, however.

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.

33789629371_813958636e_o

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?

Take a Look at My Future

A hot topic in the diabetes world is health care: how expensive it is to have a life, let alone remain upright; how we couldn’t get private insurance before the ACA was signed into law; how we still can’t get coverage now that ACA is law; the fire-laced hoops we jump through just to make sure we have have a semi-normal life without going bankrupt by a disease we didn’t want.

I don’t normally jump into advocacy beyond this blog and sharing the latest news on Facebook or Twitter. There are far more influential people with diabetes out there that people will listen to that there is no sense in me trying to add my thoughts to the mix, I think.

But no! That’s the problem! If there is anything I’m learning about this goofy election cycle circus, it’s that I do have a say and a voice, regardless how pint-sized it may be. So whether I have 100 readers or 100,000, someone might hear me and also want to help raise a voice as an advocate.

Here is the current dilemma. At some point in the future, I will retire and need to rely on Medicare for my health insurance needs. (This is all assuming that nothing changes in regard to health care and insurance in the next 30 years.) Medicare currently has a bidding program to determine which and what brands of durable medical equipment it will cover for seniors enrolled in the system. Durable medical equipment typically includes diabetes supplies like test strips, glucose meters, syringes, insulin pumps, etc. – items that help administer the care of a PWD. (Versus a prescription of insulin, which is required to keep a PWD alive.) Like any government agency I can think of, the competitive bidding program was established to find the required durable medical needs at the cheapest possible price, and then having all Medicare patients use those brands only, unless they wanted to pay out of pocket.

The problem arises when taking the cheap way out actually effects the patient’s livelihood, and sometimes can mean more hospital stays or deaths. Let’s take test strips as an example. A person with diabetes will rely on a test strip and glucose meter to give them an accurate picture of where their blood sugar stands at a given moment. Brand A, while more expensive, may have about a 15 point variance in accuracy. Brand B, a cheaper generic brand, may have a 30 to 45 point variance. Both brands are FDA approved. Let’s say my blood sugar is 70 mg/dl – which brand would I prefer to have test my blood sugar? The Centers for Medicare and Medicaid Services will argue that Brand B is acceptable. Because it’s cheaper! And saves us money! And the FDA says it’s okay!

Meanwhile, I’m wondering if I need glucose tablets or correction insulin.

Anyway, The Journal of the American Diabetes Association says that the bidding program is doing much more harm than good. (Source – Abstract. Source – Full Text [requires log in] / Other Links Here.) And really, hospital stays are typically more expensive than test strips, so I’m not sure what Medicare is actually saving. Based on these findings by ADA, PWDs are calling for a halt on the bidding program since it failed to meet standards in its test areas. In July, the program will roll out to more states and effect more Medicare patients with diabetes.

It’s already hard enough just to get my insulin pump supplies from Medtronic as a 30-something female with private insurance through her employer. Since Medicare’s coverage and ideas can trickle down into the private sector, what’s stopping my private insurance from implementing the same sort of game of health care roulette?

I have a fairly diverse readership since I cover a litany of topics. (I know, all you capsule wardrobe followers are like, what gives, woman?!) But I ask, please, hear my pint-sized voice just this once and help me take action. After all, this was, and is, still technically a blog about my life with diabetes. My very long life with diabetes.

SuspendStripWarning

DPAC (Diabetes Patient Advocacy Coalition) has made it SUPER simple to write to your legislators. Visit this clicky link to fill out one quick form about where you live and it generates letters to  your Senator, Assemblyperson, and local representative and send it all for you! OMG this is so simple. And I hate writing letters like this. The more voices your reps hear, the better.

Oh, maybe I should have posted this sooner, but, DPAC has a nifty infographic you can share/read/whatever. Consider this the reward for reading through this.

DPAC Infographic (PRNewsFoto/Diabetes Patient Advocacy Coal..)

DPAC Infographic (PRNewsFoto/Diabetes Patient Advocacy Coal..)

Friday Five: Busy Weekend Edition

55200414

I realize I haven’t done a Friday Five in a LONG time. This week in summary…


1.| So this happened.

Go home #dexcom, you're drunk. #diabetesproblems #type1 #diabetes

A post shared by Jen G. (@seejendance) on

Don’t get me wrong. I love my Dexy. Except when it doesn’t work. At all. Clearly, Dexy enjoyed too many St. Patrick’s Day Green Beers a day early. (I removed it and enjoyed too many Irish Shortbread cookies without it screaming at me.)


2.| My monthly Stitch Fix, Golden Tote shipment, and Trunk Club trunk are ALL coming at the same damn time. Fantastic timing, because I’m supposed to be figuring out my seasonal wardrobe around now. I might write summaries about all three of them in one post rather than individually. Because, tired. And Fuller House is on Netflix. (Priorities!)


3.| I’ve never really taken an interest in politics until recently. Maybe it’s the whole, being a staff member under a lobbying firm thing. I can’t make sense of the circus, even being a left-leaning centrist who prefers science over woo. A friend of mine recommended a Podcast that has been helping guide her in discussions. It’s Pantsuit Politics – or a conversation between two female friends with different political views. Their podcast began last November, but they’ve been covering more and more of the election process. (Because even they admit, they can’t escape it.) But it’s just refreshing to hear both perspectives of the political spectrum without all of the Facebook drama and subsequent unfriending. (Speaking of, post-Primary, I may retreat to Instagram. This is getting ugly, y’all.)

download


4.| I’m ridiculously excited for some time to be an adult this weekend. It’s been far too long. M and I got tickets to a local craft beer festival and we’re seeing “The Book of Mormon” as well. Sitters (and grandma) are all lined up to watch Bean. The sad part was finding out how out of touch from the local scene we are. I don’t know if we ever really were in tune with it, but now we’re so far gone, it’s analog. Thank God I have savvy friends who can tell me what’s happening.


5.| I used my travel time last week to start (and finish) listening to an audiobook for the first time. I had 6 hours, one way, to kill, so I figured I’d try it. One thing is for sure – the new Apple earbuds are NOT made for extended wear. And, Girl on the Train was a really depressing read. But I’ll give myself kudos for picking it up before it was released as a movie.

 

 

How many days until Thanksgiving?

Gah! Post election Facebook feed is unreal. It’s amazing how crazy both sides are. If your candidate won, you gloated. If your candidate lost, you claimed the world was really going to end in December and you were off to go buy guns.

Then there is me who wasn’t a fan of either large party candidate, but liked one over the other. So – I’m happy with reservations. There is a lot of work to be done, kids. It’ll be an interesting four years. But really, can the awful memes about Muslim domination stop? Jeez. We’re all in this hot mess together.

Anyway, enough of my political banter.

Now that the election is over, it’s time to start thinking about all the holidays that force my insulin pump into overdrive. If you thought Halloween was bad… wait until we get to Thanksgiving and Christmas. Anyone can avoid Halloween candy. You don’t buy it. You don’t hand it out. The end. But how do you turn down invitations to parties where the centerpiece is a giant turkey and overindulgence is the norm? The holiday social hour is centered around a high carb display of appetizers and the actual meal isn’t served until later. So you have no choice but to snack.

Don’t let me start on desserts.

So, what to do? Take a “day off” from being a staunch diabetic to enjoy the meal you only get once a year? (Seriously, when else are you going to make candied yams?) Well, that’s normally what I do. Despite my best efforts, I annually end up in the 300s post dinner and take my dear sweet time coming down. Sometimes I try to load my plate up with salad instead. (Not a big turkey fan.) But that generally doesn’t work. (See note about the appetizers.)

The added challenge will be if I have to encounter the holidays while pregnant. Since I can’t guarantee a mid-October birth in any year, I might as well start training myself now to not eat everything in sight. (Oh, I’m just sampling! Yeah…)

The problem? I’ve been so incredibly hungry in between meals. My sugars have been okay. (My app says I’m running around a 132 average or so.) But even with the added morning and afternoon protein-laced snacks, I’m famished by the time my next meal rolls around. My activity level is about the same and I’m not gaining any additional weight, so I suppose the extra calories won’t be awful. But feeling hungry an hour before your next scheduled meal just makes everything way more dramatic than I want it to be. (I’m really surprised my stomach hasn’t started singing 3 part harmonies yet.)

My fear for the holidays, that despite my best efforts and restraints, the snack table will call and I will eat All.The.Food! And it’ll all be empty carbs because that’s how my family rolls. Unless there are cashews. Then maybe all might not be lost. (Well, except maybe the cashews.)

I have two weeks…

Election Day

Happy Election Day! And it couldn’t come soon enough. I’m sick of the wasted paper flyers in my mailbox that ask me to vote for a candidate that isn’t even in my district… sick of the robo-callers… or the real ones that won’t leave you alone… and also sick of my Facebook wall becoming a battleground for my liberal and conservative friends.

However, I sincerely hope that people get off their asses and make their voices heard. Granted I live in a pre-destined “blue state,” there are still plenty of other issues, besides the Presidency, that should motivate people to go to the polls. And of course, there are your local, state senate and representatives to vote for. In Cali, we’re voting on everything from education, to labeling GMOs, to the death penalty. It’s a bit deal!

Apathy solves nothing. If you choose not to exercise your right, then you have no right to complain if you don’t agree with the outcomes.

And may the odds be ever in your favor!

…Wait.