Taylor Swift and Existential Crises

A pile of long-stemmed red roses against a chalky black background.

Photo by Annie Spratt on Unsplash. [Image Description: A pile of long-stemmed red roses against a chalky black background.]

Do you ever feel like you’ve been alone for so long that you don’t know how to spend time with someone else? Not even romantically. I’m sitting here, listening to Taylor Swift — yes, I know exactly how pathetic this sounds, thank you — after watching her documentary. (Stick with me here.) In the documentary, she talked about how she’d achieved her dreams and, while she was over the moon about it, she was struck with the realization that she had no one to call. Yes, she worked her ass off all of these years and achieved her grand goal, but she did it alone. There was no one to high five, as she put it, because her success was her own.

That stuck with me. When I kick ass and become a bestselling author, who would I call? I mean, besides my family. Who would I go out on the town and celebrate with? So, naturally, I thought of my friends. And while I have wonderful friends I wouldn’t trade for the world, and would 100% call them in this theoretical situation, who do I talk about my writing with?

My family knows about my blog. They know I want to be an author. But I never actually talk about the stories I’m writing. To anyone, friend or family. I’ve operated under a fear of “jinxing it”. If I talk about it, it’ll become a job, and these characters are too precious to me to let telling their stories become something that I dread.

The fear is not unfounded. I’ve made this mistake with projects in the past. I told people in order to become accountable and see the thing through, only to feel weighed down by expectations and pressure and possible disappointment. A lot of it was me projecting; convincing myself that if I don’t get this done everyone will see me for what I thought I was: lazy, fraudulent, never finishing what I start. Which wasn’t fair to myself, and I know that now, but I still hate the thought of having to do something. Because once I know I have to do something, I lose any and all interest in doing the thing.

Plus, why get anyone’s hopes up about any of the stories I’m writing if I may not stick with them? After all, I have a habit of not finishing the things I start. Evidence: the dozens of unfinished first drafts in my arsenal of notebooks and thumb drives. Which, to be fair, is partly because I’m still growing as a writer.

So, I didn’t jinx it. I didn’t talk about my stories. And I’m not sure it’s for the best.

Fear. Anxiety. Some days it feels like they rule my life. Because, yes, I have friends, but who am I really close with? Who do I call on a Friday night when I’m bored and need to get out of the house? Nobody, that’s who. Yes, a lot of the time I don’t feel up to it, but sometimes I do. And so now, fresh from the empowerment of Taylor Swift’s album Reformation, I’m running hypothetical situations in my head. Who would I call on a Friday night? Who is my best friend (within driving distance)? And that’s when it hit me.

I don’t have one.

I mean, I did, a long time ago, but shit happens and life moves on. In the time between then and now, I was so consumed by the daily drama of living with multiple chronic illnesses that I didn’t have time to think about strengthening my other friendships. Life moves on, yeah, but apparently without me.

Then I start thinking about how I can fix this. Forget a best friend and focus on being a better one to the friends I already have. And I’m hit with another realization.

I don’t know how.

Is it possible that, in the five or so years since, I’ve forgotten how to be a friend? With long distance friendships, your circle of people are a few taps away. And it’s hard, the distance, but your bond doesn’t suffer for it. Sitting here now, typing this, it feels like all of my friends are long distance, even though some are only a couple of towns away. How did this happen? When did normal, face-to-face conversation become a foreign concept to me? When did I stop showing up? When did I stop inviting people to hang out just to spend time with a human I don’t share a bathroom with?

Most importantly, when did I stop letting people in?

At some point in January, I promised myself I’d stop apologizing for taking up space. For having an opinion. For existing, in general. John Mulaney once said, “Hey, you could pour soup in my lap and I’ll probably apologize to you,” and I don’t think I can explain it any better than that.

My point is, while I am undoubtedly afraid of getting hurt again, I believe part of the reason I haven’t made an effort to spend time with friends in person is the same as the reason I apologize for taking up space. But I’m not a burden. And the worst anyone can say is no. And I’ve always known both of those things, but I’m still working on being okay with them. And for now that will have to do.

Review: DEATH WARDEN by C.J. Stilling

Disclaimer: I was given an ARC of Death Warden for free through Booksirens in exchange for an honest, unbiased review.


Cover of DEATH WARDEN by C.J. Stilling. The protagonist scaling rooftops with a knife in her hand. She's looking out, to the heart of the city, the stormy sky setting an orange glow over the book cover. Ravens fly in all directions.

Title: Death Warden
Author: C.J. Stilling
Genre: YA, Fantasy
Publication date: Nov. 15, 2019
Average rating: 4.43/5 stars
My rating: 4/5 stars

Goodreads Description:
“A teenage assassin. An impossible choice. The fate of everything hangs in the balance…

Sixteen-year-old Reen swore she’d never take another life. Divinely selected to assassinate a few in order to save many, she learned to jump from shadow to shadow and claim her victims without question… until she was ordered to kill the boy she loved. But when an ancient plague returns threatening to infect everyone she knows, she is forced to resume her deadly duties.

Battling a disease that turns people into nightmarish monsters, Reen must track down and terminate those responsible before the city falls, and the evil spreads beyond its borders. But the closer she gets to the source, the more she uncovers sinister secrets that will shake the foundations of her world and everything she believes.

Can Reen defend her realm without losing her soul?

Death Warden is an exhilarating YA fantasy. If you like strong heroines, compelling magic, and dark secrets, then you’ll love C.J. Stilling’s imaginative tale.”

My Thoughts:
Death Warden is a coming-of-age story about a young girl’s struggle to accept the enormous responsibility forced upon her by the Life Giver. We see Reen through her first months as a Death Warden — in a time where Death Wardens are dropping like flies — and alternate with present-day Reen, a few years later.

Y’all, this poor girl has been through so much loss and heartache. I just want to give her a hug and tell her everything’s going to be okay (even though I’d definitely be lying to her).

The amount of worldbuilding that must’ve went into creating Death Warden is enviable. At times it felt like there were too many moving parts, but it all made sense when it came together in the end. I loved the idea of extracting memories and saving them in marbles! The idea was explored further in a school setting, where teachers used these marbles like live-action autobiographies of notable people in their world’s history.

As for the romance arcs, I wasn’t particularly invested in either of them. By the end of the book, I was simply happy that Reen was happy. Though I do have to say the guy she ended up with was far more developed as a character than Erend, whose entire personality was his love for Reen.

Despite all of the above and my overall enjoyment of the book, I couldn’t get past the fact that every girl seemed to be defined by their breasts, even shadowed custodians. Don’t even get me started on Cron. I only tolerated him because of Reen and, even so, I felt like gagging during that one chapter in his head. Combined with multiple characters’ repeated use of the word wh*re, it left a sour taste in my mouth. For what it’s worth, I didn’t see anyone else talking about this in their reviews, but I thought it worth mentioning anyway.

Do I recommend this book? Yes.

So, Otherwise You’re Healthy?

Buckle up, folks, because this is a stream of consciousness blog post. Who knows where it will take us?

~

There’s this screenshot of a Tumblr post floating around the chronic illness community where a doctor asks a patient, “So otherwise you’re healthy?” and the patient laughs like it’s the funniest thing they’ve heard all year. Never have I related to anything more.

It feels like… I don’t know, like there are too many things happening at once. I’m juggling a multitude of flares that require a lot of guesswork to treat. In a lot of ways, I feel like it’s 2008 again and my doctors don’t know what to do with me and my long list of symptoms. Bouncing around from specialist to specialist, filling out new patient paperwork, hoping someone can save me from my body’s shenanigans…

There’s so much from that time in my life I’d forgotten, or, more likely, repressed. Feelings I never fully dealt with. A couple of months ago, when a doctor asked if I had pulled my own hair out, if that could be contributing to my hair loss, the memories of all of the times a doctor didn’t believe I was physically sick came rushing back.

I was eleven years old, sitting outside an exam room, while an optometrist in the mall asked my parents if there were any problems at home. I was thirteen years old, standing in a hallway, while an angry pediatric rheumatologist told my mom I was too young to have arthritis. I was thirteen years old, attending a meeting with staff at my middle school, when I was told I needed to take a glorified IQ test and meet with their psychologist before they’d consider accepting me into their homebound program. I was fourteen years old when a school nurse contacted a doctor I only saw once to “prove” I was faking it all of those times I had to call family to pick me up early.

I saw dozens of specialists before I finally received answers (hEDS, dysautonomia, gastroparesis). Some were pleasant experiences, saying they believed something was wrong but I’d exhausted all of their resources. Others were not so pleasant. Honestly, my mom remembers more than I do. Everything from around that time is such a blur… From my mom arguing with ER staff, to being misdiagnosed and treated for lymphedema, to a child psychologist interviewing me about my sexual history while I was waiting on HIV test results (I was thirteen and a virgin).

Y’all, my childhood was far from normal. I’m sure I should already be seeing a therapist to properly unpack and deal with all of it.

Anyway, back to my point, if there ever was one.

Too many things happening at once. I am currently juggling six specialists, not to mention all of the tests they’re sending me for (which all have to be done ASAP, of course), and attempting to keep up what I call my psoriasis containment regimen. Now I have all of these repressed feelings to sort through, from a time in my life I’d rather leave in the past, and…

Where do I find the time and the head space to be…myself? Not a patient, not a tangled bundle of childhood trauma, not stressed out the wazoo. Just plain Danielle: writer, reader, jewelry maker.

I think half the battle of living with chronic illness is finding balance. The ever-elusive balance.

Lately, balance for me means catching up with a friend over Snapchat or Instagram, while I wait for a doctor to enter whichever exam room I’m occupying that day. I mean, frantically swiping a finger across my phone and shoving it in my back pocket while my face burns with embarrassment isn’t the most graceful first impression to give my doctor, but it’s either that or leave my messages unread for another week, so, we do what we have to.


A faded picture of a fountain resting over a handwritten letter. Purple flowers lay on the top left of the table.

Photo found on Unsplash. [Image Description: A faded picture of a fountain resting over a handwritten letter. Purple flowers lay on the top left of the table.]

Review: THE SOUND OF STARS by Alechia Dow

Disclaimer: I was given an ARC of The Sound of Stars for free through NetGalley in exchange for an honest, unbiased review.


Cover of THE SOUND OF STARS by Alechia Dow. A galaxy of cool blues and vibrant purples surrounding a disintegrating city skyline.

Title: The Sound of Stars
Author: Alechia Dow
Genre: YA, Romance, Sci-Fi
Publication date: February 25, 2020
Average rating: 4/5 stars
My rating: 4/5 stars

Goodreads Description:
“Can a girl who risks her life for books and an alien who loves forbidden pop music work together to save humanity?

Two years ago, a misunderstanding between the leaders of Earth and the invading Ilori resulted in the deaths of one-third of the world’s population.

Seventeen-year-old Janelle ‘Ellie’ Baker survives in an Ilori-controlled center in New York City. Deemed dangerously volatile because of their initial reaction to the invasion, humanity’s emotional transgressions are now grounds for execution. All art, books and creative expression are illegal, but Ellie breaks the rules by keeping a secret library. When a book goes missing, Ellie is terrified that the Ilori will track it back to her and kill her.

Born in a lab, M0Rr1S (Morris) was raised to be emotionless. When he finds Ellie’s illegal library, he’s duty-bound to deliver her for execution. The trouble is, he finds himself drawn to human music and in desperate need of more. They’re both breaking the rules for love of art—and Ellie inspires the same feelings in him that music does.

Ellie’s—and humanity’s—fate rests in the hands of an alien she should fear. M0Rr1S has a lot of secrets, but also a potential solution—thousands of miles away. The two embark on a wild and dangerous road trip with a bag of books and their favorite albums, all the while making a story and a song of their own that just might save them both.”

My Thoughts:
I’m torn, y’all. There are a plethora of things to love about The Sound of Stars! On the other hand, I can’t help but think this book was not ready for public consumption.

Let me explain.

Ellie is easily one of my favourite protagonists of all time. She felt like a person who could actually exist, rather than just a main character in a sci-fi novel. Does that make sense? I related to her struggles with anxiety and hypothyroidism and, as an adult in my twenties, was surprised to learn some new coping mechanisms for anxiety through a fictional teenager’s mind. I don’t simply love her for her health issues, so, moving on.

Ellie draws strength from the memory of her parents’ activism, as well as the main characters of her favourite books, and I am 100% here for all of that. I do have to confess that my favourite character in this book is actually her best friend Alice.

The LGBTQ+ representation in The Sound of Stars was fantastic. I adored the fact that Ilori respect pronouns and genders beyond the binary. Ellie is demisexual, which is cool to see firsthand during her adventures with M0Rr1S.

On the subject of Ellie and M0Rr1S… Watching their romance develop was adorable. I loved reading about them bonding over music and books, especially The Starry Eyed. After they finally expressed their growing feelings for each other (I don’t think this is a spoiler considering the genre of the book, but you have my apologies if you feel otherwise), it got kinda cheesy, and not in a cute way. Was I so insufferably gushy when I dated in high school? Possibly. I hope not. By repeatedly professing their undying love, it felt like the characters were trying to overcompensate for something, when they really didn’t need to.

As for the story itself, M0Rr1S’s plot twist came out of nowhere. Okay, yes, I know, it’s a plot twist. But it gave me whiplash. I suppose it makes sense for M0Rr1S as a character, but having been in M0Rr1S’s head a number of times… I felt lied to. Basically, everything after that halfway point threw me for a loop and I had trouble following the storyline. My review notes consisted of me begging the book gods to enlighten me on what the heck was happening. However, when I took a glimpse at other readers’ thoughts, I realized I might’ve been alone in this. So do with that what you may.

As for the ending, I liked the part with the other aliens, and their history with the main characters. It should be noted that it set up for a possible sequel, which I wasn’t aware of at the time.

All things considered, The Sound of Stars could still be an incredible story for teenage girls like Ellie who struggle to find themselves in the books they read. Anyone above that age bracket might want to look elsewhere.

30 Minutes and 1 Bowl of Chicken Noodle Soup Later

The back of a femme person. Their arms are crossed behind their back, with tiny white flowers attached to look like veins. Bandaids hold them in place.

Photo found on Unsplash. [Image Description: The back of a femme-presenting person. Their arms are crossed behind their back, with tiny white flowers attached to look like veins. Bandaids hold them in place.]


As I sit here, waiting for a delivery person to arrive with our groceries (which mostly consists of tissues, medicine, and comfort food), I’m all too aware of the irony in being the only one up to the task of going downstairs, answering the door, and directing grocery bag traffic.

You see, everyone in my household, with the exception of my older brother (who is at work, thus unable to greet the delivery person), is muggle sick. I, as a professional in the field of living with illness, have been doing what I can to take care of everyone, and in doing that I’ve discovered being useful is something I enjoy. I like being busy. I like multitasking. I like feeling as if I’ve done something… What’s the word I’m looking for?

Not productive, exactly…

Score another one for brain fog, I guess.

[ Thirty minutes and one bowl of chicken noodle soup later. ]

What was I saying? Right, so everyone is sick and I am, too, but I’m used to it.

Don’t get me wrong, hauling bags upon bags of groceries upstairs left me feeling as if my lungs were on fire and that all of the oxygen in the world wasn’t going to satiate my hunger. But I’m already familiar with the consequences that come with any type of physical exertion.

It was both interesting and sad to watch my parents live the past week or so in my shoes. Of course, coughing and mucus aren’t usually in my chronically ill job description, but the other symptoms are there: dizziness, fatigue, muscle weakness, joint pain, stomach upset, headaches, tachycardia, shortness of breath… You get the idea. For this short time, our roles are reversed, and I’m reminded of every Disney Channel show where two characters switched places to view their arguments from a different perspective.

Everyone is sick and I am, too, but I’m used to it.

Review: ALL THE STARS AND TEETH by Adalyn Grace

Disclaimer: I was given an ARC of All the Stars and Teeth for free through a Goodreads giveaway in exchange for an honest, unbiased review.


Cover of ALL THE STARS AND TEETH by Adalyn Grace. Title dominates the center of the cover in all caps, bordered by oceanic skeletons and intricate weaponry. The corners of the borders feature a skull, a crown made of bones and ivory, a mermaid tail poking out of ocean waves, and a pirate ship doing the same.

Title: All the Stars and Teeth (All the Stars and Teeth, #1)
Author: Adalyn Grace
Genre: YA, High Fantasy, Romance
Release date: February 4, 2020
Average rating: 4.16/5 stars
My rating: 4.5/5 stars

Goodreads Description:
“Set in a kingdom where danger lurks beneath the sea, mermaids seek vengeance with song, and magic is a choice, Adalyn Grace’s All the Stars and Teeth is a thrilling fantasy for fans of Stephanie Garber’s Caraval and Sarah J. Maas’s Throne of Glass series.

She will reign.

As princess of the island kingdom Visidia, Amora Montara has spent her entire life training to be High Animancer—the master of souls. The rest of the realm can choose their magic, but for Amora, it’s never been a choice. To secure her place as heir to the throne, she must prove her mastery of the monarchy’s dangerous soul magic.

When her demonstration goes awry, Amora is forced to flee. She strikes a deal with Bastian, a mysterious pirate: he’ll help her prove she’s fit to rule, if she’ll help him reclaim his stolen magic.

But sailing the kingdom holds more wonder—and more peril—than Amora anticipated. A destructive new magic is on the rise, and if Amora is to conquer it, she’ll need to face legendary monsters, cross paths with vengeful mermaids, and deal with a stow-away she never expected… or risk the fate of Visidia and lose the crown forever.

I am the right choice. The only choice. And I will protect my kingdom.

My Thoughts:
I adored this book! I mean, come on, a charming pirate, bad-ass heroine, blood-thirsty mermaid, endless adventure, and the promise of a world-ending battle?? Sign. Me. Up.

The only reason I deducted half a point is because foreshadowing made some of the plot twists predictable. To be honest, though, the author built such an immersive world that I barely cared that I knew what was going to happen before the characters did, and there were other twists I never could have predicted.

Amora’s character development had me in tears by the end (in a good way). Without spoiling anything, she grew and learned so much and I’m just really proud of her, okAY??

Do I recommend this book? Yes.
Will I be reading the sequel? Yes!

Review: ASHLORDS by Scott Reintgen

Disclaimer: I was given an ARC of ASHLORDS for free through NetGalley in exchange for an honest, unbiased review.


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Title: Ashlords
Author: Scott Reintgen
Genre: YA, Fantasy
Release date: Jan. 21, 2020
Average rating: 4.27/5 stars
My rating: 3.8/5 stars

Goodreads Description:
“Every year since the Ashlords were gifted phoenix horses by their gods, they’ve raced them. First into battle, then on great hunts, and finally for the pure sport of seeing who rode the fastest. Centuries of blood and fire carved their competition into a more modern spectacle: The Races.

Over the course of a multi-day event, elite riders from clashing cultures vie to be crowned champion. But the modern version of the sport requires more than good riding. Competitors must be skilled at creating and controlling phoenix horses made of ash and alchemy, which are summoned back to life each sunrise with uniquely crafted powers to cover impossible distances and challenges before bursting into flames at sunset. But good alchemy only matters if a rider knows how to defend their phoenix horse at night. Murder is outlawed, but breaking bones and poisoning ashes? That’s all legal and encouraged.

In this year’s Races, eleven riders will compete, but three of them have more to lose than the rest–a champion’s daughter, a scholarship entrant, and a revolutionary’s son. Who will attain their own dream of glory? Or will they all flame out in defeat?”

My Thoughts:
ASHLORDS strongest elements are its intricate world design and beautifully fleshed-out characters. I particularly loved the science behind Phoenix recipes and the delicate calculations required of adding special components. Learning more about that is what kept me reading whenever the first half of the book lost my attention.

Because there were times where my focus wandered elsewhere.

The story moved slowly at first; I could only get myself to read one chapter at a time during the first half of the book. The pace did pick up around the halfway mark, when the races officially began, and held my attention until the very end.

Around 80% through, I said this on Goodreads:

“During this whole book, I’ve been wondering where the author went. NYXIA captivated me from start to finish, but the first half of ASHLORDS was such a bore. Now, however, I’m so happy I kept reading! This is what I’ve been waiting for.”

Let’s talk about Pippa’s character development, shall we? I was probably supposed to be rooting for Imelda, the underdog, but Pippa’s character development was just too good to ignore. I’m interested to find out how Pippa’s loyalties will change, moving forward. If I’m being completely honest, I wasn’t all that invested in Imelda’s POV during the races. Not until… Well, you’ll have to find out for yourself.

I have to believe the tedious start to ASHLORDS was necessary. That the sequel will be full of the action and adventure I so craved until the second half of this book. Only time will tell.

Do I recommend this book? Sure.
Will I be reading the sequel? Yes.

Remicade & Hair Loss: These Are the Facts as I Know Them

A white cat, with spots of black and brown, yawning. The cat could also be screaming into the void. Whichever you prefer.
Photo by Sophie Dale on Unsplash. [Image Description: A white cat, with spots of black and brown on its head, yawning. Or shouting into the void. Whichever you prefer.]

It’s amazing how much things can change overnight.

Last night, I was reduced to tears over the worsening state of my scalp. It was finally getting better with use of a steroid gel, to the point where a substantial amount of hair was growing back, but I had to stop using that gel due to the stitches from a punch biopsy (doctor’s orders). Even with prescription shampoo, my skin is back where I started from: inflamed, itchy, painful, dry, and crust-like.

Weeks, if not months, of hard work… Erased.

I was cursing myself for agreeing to the biopsy without a moment’s hesitation. I was cursing my doctor for requesting I get the punch biopsy done in the first place. I was cursing the universe for giving me hope, for letting me believe this nightmare would soon be behind me, only to rip that hope away just as quick.

In summation, yesterday sucked.

Today, I received my punch biopsy results. A test I’d previously thought pointless, since none of my doctors could agree on their theories about why I’d lost so much hair in such a short amount of time. A previous biopsy gave no substantial answers and my skin was showing signs of a combination of flares. How would we ever narrow it down? Why would I have any reason to believe this biopsy was going to tell us more than the last?

Well, these are the facts as I know them:

Remicade wreaked a lot of havoc; the extent of which I doubt I’ll ever truly know. My psoriasis is the worst it’s ever been. Which isn’t saying much, I guess, because I’d only ever had a tiny patch on the back of my head before starting the infusions. Anyway, it’s everywhere now, in areas I’d rather not mention.

Along with worsening psoriasis, Remicade also gave me drug-induced lupus.

Last, but certainly not least, the punch biopsy results:

As if worsening psoriasis and drug-induced lupus were not enough, I have been diagnosed with alopecia areata.

Like I said, I received the biopsy results today, so I still have research to do regarding this new diagnosis. All I know is that my immune system is attacking my hair follicles, causing a hell of a lot of hair loss. There’s no cure, but it could grow back. Some of it already is. I’ll know more when I meet with the many doctors I’ve been shuffling between for the past two months.

It’s amazing how much things can change overnight.

Review: NIGHT LATCH by Anela Deen

Disclaimer: I received an ARC of Night Latch for free through the author in exchange for an honest, unbiased review.


Cover of NIGHT LATCH by Anela Deen.

Title: Night Latch (The Locksmith Duology, #1)
Author: Anela Deen
Genre: Urban Fantasy, Romance
Publication date: Oct. 1, 2019
Average rating: 3.92/5 stars
My rating: 4/5 stars

Goodreads Description:
“Sam Alvarez doesn’t just open locks. He’s the key.

Living in Bellemer, Iowa, Sam leads a typical small-town life. When he’s not looking after his Nana or dealing with his mother’s expectations, he runs a one-man locksmith company. Unlike regular locksmiths, he can open anything with a touch and a wish, but Sam keeps that secret to himself. No reason to alarm the neighbors, after all. And if he sometimes feels an indefinable pull to do more with his life, well, that’s probably just indigestion.

Then one day, an unsettlingly beautiful out-of-towner asks for Sam’s help to open a door. Only one problem: The job’s in a graveyard. And the client? Turns out she’s Death.

Maybe that’s two problems.

When Sam unlocks more than he intended and demons come out to play, he discovers he’s far more than a locksmith with a hidden quirk. Now, he needs to figure out who he is and what he’s been called to do before darker forces close the door on him for good.”

My Thoughts:

I have to admit, when I first heard about Night Latch, I wasn’t sure if it was going to be my thing. Yet, as with all of Anela Deen’s books thus far, I finished reading it in record time.

You can’t go wrong with Sam’s boundless wit, but I particularly enjoyed the smaller details to his character, especially once we discover the truth about who he is. Sam is a young adult, but he’s an old fashioned soul who uses a flip phone and stays away from social media (unless he’s e-mailing his long-distance friends). While I’d previously only attributed those character traits to drug dealers, serial killers, and the tech-averse elderly, you might be relieved to know Sam is none of those things.

What a doozy of a cliffhanger! I need to know what becomes of Sam! And Alice, for that matter. Does the end of this journey lead to redemption?

Do I recommend this book? Yes.
Will I be reading the sequel? Yes.

The One Where I Kind of Lose My Shit

Happy Dysautonomia Awareness Month, friends. Holy shit am I glad the summer’s behind us!

Well, I say that, but it was in the eighties last week (Fahrenheit). Just my daily reminder that our planet’s temperature is set to a slow boil.

GIF found with Google images. [GIF Description: Schmidt from NEW GIRL saying, “The economy stinks, bees are dying, and movies are pretty much all sequels now.”]

So, summer. I did absolutely nothing I had originally planned to do. Chronic illness has a habit of pulling out a Jenga piece at the very bottom just to watch the whole tower collapse into a loud, messy puddle of blocks. “Oh, you wanted to hang out with your friends for the first time in over a year? It’d be a shame if you felt overwhelmingly dizzy-nauseous for three months straight, huh? Happy 23rd birthday!”

So, summer.

I was on a new medication that my doctor was hoping would delay my need for monthly IV fluids. Well, shocker, my body rebelled (again). I actually had to increase my IV fluid appointments to every two weeks, instead of every four. I should’ve made the change a long time ago, if we’re being honest. I had an appointment with the prescribing doctor set for a week or two from now, where I planned to suggest we get me off of that medication we were trying, but I had to move it because dermatology trumps everything right now.

If you follow me on Twitter or Instagram, you already know a little about my psoriasis flare. It’s gotten to the point where most of the top of my scalp is bald, save for a few stubborn strands of hair and large patches of psoriasis.

How did it get this bad, you ask? It’s only a theory at the moment, but I suspect Remicade plays a big role in the severity of it. Something about my body’s lowered resistance… I don’t know, a bunch of science-y words I’m too tired to recall. Before I started Remicade, I had a minuscule patch on the back of my head that was pretty much gone after a couple of washes with prescription shampoo. Cut to present day, about 11 months later, the psoriasis has spread to various areas all over my body and it is only getting worse.

You might be asking yourself, “Dannie, how do you know it’s psoriasis? Could it be a different side effect from Remicade, or something else altogether?” And my answer would be, “Because I had a surprise scalp biopsy.” Then I’d throw confetti because, yes, y’all! This is my life!

Bo Burnham throwing confetti toward his live audience.

GIF from Google images. [GIF Description: Bo Burnham throwing multicolored confetti toward his live audience.]

My mom turned pale at the sight of a needle in my head, but I felt nothing except for a sting with the lidocaine. Honestly, the biopsy was over before I had time to process what was happening. Probably for the best.

I had a follow-up appointment with the same dermatologist recently, where he referred me to another doctor for answers as to whether or not my hair will grow back on its own. Because apparently there’s a chance it won’t. Which would suck, considering there’s no escaping it without putting a hat, headscarf, or wig on. Sometimes I prefer to walk through life without a chronically ill spotlight, you know?

I’ve been making jokes about my situation ever since we got out of that appointment because that’s who I am as a person, but I’m kind of losing my shit on the inside. I am twenty-three years old. I had an amazing head of hair! It was thick, dried straight, easily curled, and I pretty much rocked every hairstyle I’ve ever dared to try. And now the top of it is just…gone. You can see for yourself on my Instagram, if you dare.

It makes me laugh that you can’t even tell I lost any hair when I have a headscarf or hat on. Perfect, even my hair loss is invisible to strangers on the street… Which, I mean, I’m not complaining, but it’s discouraging to feel like I need to whip off my head covering to prove I’m not exaggerating or being overly dramatic. I’ve been put in that position a couple of times already and, though I’m not ashamed of showing my rather large bald patches, it’s the principle of the thing.

Alrighty. Well, I think that about covers it. I need to go hop in the shower, thanks to my new psoriasis containment routine, consisting of an alternating schedule of showering and applying a steroid gel every other night. I don’t know how I’m still standing. (Hint: I haven’t done much standing. Or moving in general.)