Friday Five: What I’m Reading

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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.

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A Caregiver’s Lament

A fellow mom friend posted a frustrating update to her son’s prognosis today. Her son, who is around Bean’s age, has been battling leukemia for the last several months. She shared some not-great news about his current health and is worried about his future development. She brought up the heavy burden and guilt she felt for making decisions about his treatments that could have lasting repercussions on his health.

While other moms reassured her that her son has no reason to blame her–she is making these decisions now so he CAN have a future–she can’t help but feel like she’s not doing enough and her child will grow up resenting her.

For a moment, I stepped into my mom and dad’s shoes. And pretty much every D-parents’ shoes across the world.

Comparing childhood cancer to childhood diabetes is like apples and oranges so I won’t dive down that rabbit hole. The small common threads I can connect are the sacrifice and guilt of a caregiver.

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I didn’t want to turn the conversation to me in my response. But I wanted to share with my friend, that as someone with a frustrating and relentless illness, I value every sacrifice and every decision my parents made to keep me alive and healthy. My parents gave up a lot to keep me complication-free. Namely sleep, free time, and a carefree lifestyle with a nuclear family.

I may have hated them in the short term for superficial reasons. I was, of course, a child, and incapable of seeing things beyond immediate face value.

For example:

  1. When I was a toddler, I didn’t like needles. Shots hurt. Blood tests hurt. I often hid in my dad’s closet to avoid shots. But, they still found me and mom still gave me my insulin.
  2. I didn’t like to eat. I was extraordinarily picky. But, when Regular and NPH insulin dictated my meal schedule, it was either this or a hospital trip. Docs said just give it to me. Veggies be damned. My diet consisted of macaroni and cheese, hot dogs, and grilled cheese for several years. (Karma is a bitch, by the way – my kid loves 2/3 of these things.)
  3. I didn’t go to my first overnight sleepover until I was well passed Junior High. My mom always picked me up around midnight. This was the bane of my tween social status. (On the flipside, we had a lot of sleepovers at my house.)
  4. We lived very frugally. We didn’t have the nice computers (by 1990’s standards), video game systems, new clothes, whatever. We went on vacations but always flew standby. I didn’t always understand it as we seemed to live comfortably otherwise. But then I started paying my own medical bills. Oh.

If I am truly my mother’s daughter, I can understand that the screaming during shots hurt her as much as they did me. That she felt like I wasn’t getting adequate nutrition because I just needed to eat something. That she hated picking me up at midnight as much as I did, but the cost of me passing out among the company of diabetes-strangers was more worrisome. That she probably wished she could give me the world, but the best doctors were out of network.

It wasn’t until I was on my own that I realized the magnitude of my illness and what my parents did. Or what they had to endure from doctors or the peanut gallery; the sleepless nights wondering when my Lantus crash would occur; worrying if I would go blind or lose my legs because my A1C was elevated. Just the sheer impact of doing everything humanly possible to care for me and it still may not be enough. Then not knowing if it would be.

So my friend, I only offer to share the load and to seek others who share similar loads. Being a caregiver isn’t easy–but I come with encouragement that your work and effort will not be in vain.

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.

Honest Recipes: Banana Flax Muffins

I haven’t done a recipe post in a while. (Maybe several years.)

Anyway, we tend to like muffins in this house. (And by we, I mean, the toddler likes to eat them and I like to not think too hard about packing her weekday breakfasts. Win win.) I often find myself hiding vegetables, fiber, and other nutrient dense items in these muffins because let’s face it, toddlers aren’t going to eat it alone.

My usual Spinach Banana muffin standby recipe was thwarted by under-estimating how much spinach this household goes through. Alas, no more spinach left. Since I’m not going to Target for the 5th time this week, I decided to be resourceful and use what I had in my kitchen.

Banana Flax Muffins

My pantry tends to be a breeding ground for good intentions that never see the light of day. I go on Pinterest and find cool recipes with obscure ingredients, buy said ingredients, and then never do anything with them. (Usually, because those recipes feature even more obscure ingredients I forgot to purchase.) This is the one occasion where Pinterest did not steer me wrong, so I must share.

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Banana flax muffins sound as about as interesting as the backside of my hand, but they are actually really good. I’m sure the toddler will find them most appealing in her morning fare; especially because they crumble into pieces of sweet allergen-free banana bread flavor quite easily. (I can hear the “Mommy, I made mess” from the backseat of my car now.)

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Why are they so crumbly? Well, that would be the rice flour and the flax meal… and not a lick of eggs, flour, dairy, or refined sugar or fun to be seen here. I literally have no idea why I had brown rice flour in my pantry. It was sealed and old – so I definitely brought it over during our move because I felt guilty for paying so much for it. Do you have any idea how hard it is to find a decent recipe that uses only rice flour?

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And flax meal – well, bonus for me as I’ve been looking to incorporate more fiber-rich whole grains into my diet. Apparently, flax can help lower LDL cholesterol. Cool – I’ll scarf down a few of these a week and maybe that will get my endocrinologist off my back. (Don’t worry – my LDL level is okay-ish for a normal person. Just not a person with diabetes.)

Thank goodness they taste pretty damn awesome.

Without further ado, I present Banana Flax Muffins.

Banana Flax Muffins

Banana Flax Muffins

Makes 16
Ingredients
  • 2-1/2 cups brown rice flour
  • 3/4 cup golden flaxseed meal
  • 1-1/2 teaspoons ground cinnamon
  • 1/4 teaspoon nutmeg
  • 1-1/2 teaspoons baking soda
  • 1 teaspoon baking powder
  • 1/2 teaspoon salt
  • 1-1/2 cups mashed bananas (3 medium)
  • 3 tablespoons oil
  • 1 cup maple syrup (or agave, or whatever liquid sweetener you prefer)
  • 2 teaspoons vanilla
  • 2 Tablespoons fresh squeezed lemon juice
  • 3/4 – 1 cup water or milk of choice (I used almond milk)
Instructions
  1. Preheat oven to 350˚ F. Line 2 muffin pans with 16 muffin papers. Spray liners with cooking spray.
  2. In a large bowl, whisk together flour, flaxseed meal, ground cinnamon, nutmeg, baking soda, baking powder, and salt.
  3. In a medium bowl, mash bananas very well. Stir in oil, maple syrup, vanilla, lemon juice, and water or milk until well mixed. (I used a Kitchen Aid mixer on the lowest setting.)
  4. Add the flour mixture to the wet ingredients and mix until well combined. Fold in raisins, if using.
  5. Fill the muffin tins to the rim with batter. Bake in the center of the oven for 20-23 minutes, or until golden brown on top. Cool completely before serving.

Notes

  1. The dough is going to look odd if you don’t normally bake with alternate flours. It almost had a gelatinous, gooey look to it. It’ll come together – flax is often subbed out for eggs.
  2. There was a note about the muffins sticking to the liners – solve that by spraying the liners with cooking spray. Or use silicone ones.

 

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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>
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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.