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.

Something Different

* taps mic *

Is this thing on?

In all seriousness, hello, I am indeed still alive. My health isn’t the best, but that’s nothing new. Anyway, here’s a snippet of a story I’ve been toying with since January. Constructive criticism is always encouraged!


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

Photo by Debby Hudson 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.]


. . .

  A part of me wants him to find me. Kai and Maev are my best friends in the entire universe. Sure, our relationship changed after Kaidell found out I was to be his charge, but I swore to myself I would not let the formalities of the hierarchy dictate who I could and could not be friends with. Unlike his cousin, it took time for him to see things my way.
  When we were growing up, Kai’s mom often said, amusement playing at the corners of her lips, if the three of us were in a room together, trouble was bound to find us. I miss being in their lives more and more with each passing day. Especially now, with the loss of their fathers… I want more than anything to be there for them, but exposing myself would mean putting everyone, humans and Irithians alike, in danger.
  So, I stay in the cabinet.
  “I could’ve sworn I heard…” Kai leaves the thought unfinished.
  “These walls are terribly thin. Maybe one of the neighbors?”
  “Maybe.”
  “You came here for a reason,” Emelyse says, diverting the conversation.
  “Yes. Empress Martenna sent me with a message. ‘The Qilxon is endangered.’”
  Mom? She’s the one who ordered Emelyse to take me and run. I’ll never forget the desperate look on my mother’s face when I begged her to let me stay. We haven’t seen or heard from her since. Well, aside from when she shows up in the news, usually alongside my father.
  “‘The Qilxon is endangered,’” Emelyse repeats carefully. “You’re sure that’s what she said?”
  “Verbatim. What d-”
  Kai’s cut off by Emelyse’s sudden need to be mobile.
  The Qilxon is endangered.
  What could that mean? Qilxon are an endangered species, but so are Irithians, for that matter. The closest comparison I can think of to one of Earth’s creatures is the acanthopholis, but smaller. Also unlike the acanthopholis, a Qilxon’s legs are all the same height and they have more horns on their backs, extending up and down their spine. Despite their intimidating exterior, the Qilxon are gentle creatures. They’re only aggressive when first provoked.
  Mom compared me to them once, after she found out I was being bullied at school for Dad’s progressive views. A girl named Nell pushed me during our learning break. I kicked the back of her knee when she’d begun to walk away, causing her to collapse and break her nose on impact. Only aggressive when first provoked.
  The Qilxon is endangered.
  I cannot escape the cabinet under the sink fast enough.

Chronically Stuck

rawpixel-611119-unsplash

Photo by rawpixel on Unsplash. [Image description: Someone putting a blue Post-it note on their laptop reading, “Let it be”.]

For the past few months, I’ve been feeling…off, and I think it shows in my blog posts. I’m not writing as much as I used to, both with my blog and fiction. Don’t get me wrong, I want to write. I’ve had ideas, and even if I didn’t have any ideas, I have lists overflowing with them for exactly that kind of situation.

However, as soon as I grab a pen, or open a fresh Google Doc, my inspiration is gone and I’m forced to set my tools aside once again. Now, I’ve tried the “just start writing and see where it takes you” method, which is actually the only reason I’ve posted anything at all on my blog these past few months. It’s just not doing it for me.

When I launched ChronicallyDannie, I had this…drive to create. I remember finishing five posts in my first week and being so proud of every single one. I’m trying desperately to find my way back to that place by reading and rereading my favourite posts, flipping through journal entries from that time, distracting myself with other projects, and straight up asking my friends to tell me what I should write about. My goal when I was reading my old blog posts and journal entries was to get a better understanding of where and why things changed for me. You know what I’ve come up with? Bubkis. Nada. Zilch. Zero. Not one dang clue.

I am in no way saying I’m going to abandon this blog. Writing is and has always been my creative outlet. I’ve simply misplaced my inspiration, I think, and need to figure out a way to get it back. Until then… Well, I truly don’t know.

Breathing and Spring Cleaning

Breathing-Spring-Cleaning

Photo by Annie Spratt on Unsplash. [Image Description: Blue hydrangeas in the background. The words “Breathing & Spring Cleaning” in black against a sheer white rectangle in the foreground.]

If you follow me on Instagram, you might’ve seen that I did some spring cleaning last weekend. Bulk week started on Easter, so my dad and I agreed it was the perfect time to get rid of the furniture I’ve been staring at 24/7 for over a decade of my life.

Can you tell I was all but begging for a change of scenery?

To be fair, this furniture set is way too much for the size of my bedroom. It was my brother’s, up until he became a teenager, and of course I inherited it when our parents redecorated his room. I can’t remember what my furniture situation was like before the hand-me-downs swallowed any and all of my free wall space. For over a decade, though, I haven’t been able to access one of the drawers in my bed frame. Drawers from one of the three dressers are also blocked just enough that I can only pull them open halfway. I found ways to work around it, but I’m an adult now. If I’m going to be bedbound for a majority of the time, I’m at least going to have furniture I can actually access, damn it!

To test the waters, I cleared 1 out of 3 of the dressers and my dad hauled it away. Ugh, you guys, I cannot tell you how much of a relief it is to not feel like your bedroom walls are closing in on you anymore. It’s weird having open space where the dresser used to be, but a good weird, you know? Anyway, I’m happy.

During this process, I ended up discovering a wall socket and a previously beloved pajama shirt I hadn’t even noticed was missing. Pretty successful evening, if I do say so myself. If you don’t count the disaster area that is my bedroom floor at the moment… Boxes and junk everywhere! When did I accumulate so much stuff?! Seriously, the amount of graphic tees I own alone is ridiculous. Especially considering I only wear, like, three of them regularly, on the rare occasion I leave my house. Otherwise I live in pajamas, which are currently taking up two drawers and half of a gigantic cardboard box.

On the chronic illness front, ankylosing spondylitis is piiissssed. I tried to lay down with my legs against the wall to make my POTS happy, but then ankylosing spondylitis decided to show up to the party and declared that position was going to be my worst nightmare come to life. I’m propped up against some pillows now, so the pain’s not too bad, but I shudder at the thought of what laying down to go to sleep is going to be like… Yikes. I’m also about 99.9% sure waking up tomorrow is going to be a drag. I used muscles I’d forgotten even existed trying to get this dresser situation sorted. My body is literally in for a rude awakening.

Now that I think about it, Methotrexate must be working because I had zero shoulder pain. Before, if I was upright for too long, the back of my left shoulder would start to burn so bad, I wouldn’t have been surprised if it were actually on fire. Don’t get me wrong, my back is screaming at me, but I’d take this over that shoulder pain any day.

Do you have the spring cleaning bug, too?

Versatile Blogger Award

I’ve been nominated for the Versatile Blogger Award. Thank you so much for nominating me, Mackenzie! Mackenzie, from Life with an Illness, is a fellow spoonie. I particularly enjoy her Midweek Motivation series and I think y’all will agree with me, so go check her blog out!

versatile 18

[Image Description: The words “The Versatile Blogger Award” in the middle of a rosey pink floral wreath.]

Rules

  • Share 8 interesting facts about yourself.
  • Nominate a few other versatile bloggers.

8 Facts About Me

  1. I started a YouTube channel when I was twelve and kept it going until I was about sixteen or seventeen years old. All of those videos have since been deleted or privatized, as no human being should be subjected to that level of torture.
  2. I’ve been chronically ill for over nine years and only recently learned how to refill my own medication.
  3. It’s in your best interest not to stand between me and a slice of cake. Especially if it’s chocolate or carrot.
  4. I’m one of those people that immediately checks for abs after they exercise.
  5. I really want to get better at applying makeup, but apparently not enough to actually try.
  6. When I was ten years old, I dreamed of being a pro skateboarder. Hate to break it to ya, younger me, but you never even learned how to turn!
  7. If I were a braver person, I would get rid of 3/4 of my wardrobe and start over, only bringing in pieces I 100% adore. I’m also broke, so there’s that.
  8. I don’t subscribe to the idea that you only have to be/do one thing for the rest of your life. I’ve got dreams! They’re multiplyin’…
electrifying gif

[Image Description: A GIF of a scene from the movie Grease. The character Danny is pretending to be electrocuted with the caption, “It’s electrifying!” at the bottom of the image.]

Nominations

I’m going to be that blogger right now and not nominate anyone. *Gasp* Yes, I know, I’m terrible, but those eight facts took me three! hours! to think up and I need sleeeep. “Life is hard,” she types sarcastically.

Is This How Abled People Feel Every Day?

ryan-moreno-99460-unsplash

Photo by Ryan Moreno on Unsplash. [Image Description: A side view of a person with long blonde hair and their arms outstretched. Even without seeing their face, they look free.]

The past few weeks have been hectic around the ChronicallyDannie household. My mom was in the hospital due to her own health issues, which I will not go into detail here because, unlike her daughter, she wouldn’t appreciate having every intimate detail of her malfunctioning body broadcast on the Internet… Although, I will say she was discharged this week and is recovering from her surgery now. Things here are calming down a little bit.

Man, have I missed blogging! The only thing stopping me was lack of inspiration. To be honest, I’m still not at all inspired, but I figured I should stop thinking about blogging and just do it.

If you were a reader of Chronically Dannie around this time last year, you might remember that spring is my favourite season in regards to my health. The arthritis bit with the rain can be a killer, but Chronic Fatigue Syndrome gives me a much needed break. I forgot what it was like to wake up feeling rested. I feel human again! And I’m able to get so much done…

Today, I tossed out the recyclables, brought the basket of clean clothes upstairs, and unloaded the dishwasher. Do you want to know when I was able to do that last? Last spring! I hadn’t taken my meds yet, so I definitely had to rest my heart after all of that excitement, but you guys… Ugh. I don’t even know what to say. It feels nice; that’s all I’ve got.

I know my body won’t keep this up for long. Hell, I’ll definitely be feeling the consequences tomorrow. For now, though, I’m going to enjoy the little time I do have left until Chronic Fatigue and sleep apnea catch up to me once again.

Is this how abled people feel every day?

Bracelets for a Cure: Raising Money for Gastroparesis Research

For those that don’t already know, I have an Etsy shop, where I make and sell beaded bracelets. I knew even before I opened my shop that I wanted to do something to raise money and awareness for different illnesses. I’ve done a couple of fundraisers for Dysautonomia International in the past, raising over $60.

This time, I’ve chosen G-PACT, a nonprofit dedicated to the funding of research and awareness of illnesses such as gastroparesis (GP), Chronic Intestinal Pseudo Obstruction (CIP), and Colonic Inertia (CI). If you buy a bracelet from my Etsy shop before April 2nd, 20% of your purchase will be donated to G-PACT!

Go HERE to shop.

image1

Graphic made by me in Canva. “Bracelets for a cure! Until April 1, 2018”

You Behind the Illness Tag

renee-fisher-494610-unsplash.jpg

Photo by Renee Fisher on Unsplash. [Image Description: A black wall full of graffiti hearts in a variety of colours.]

Though I wasn’t technically tagged by Linds, I thought this one looked like fun, so I’m doing it anyway! You should definitely go and check out her blog.


Four Places I’ve Lived

  1. The same house my entire 21 years of life.
  2. We’re off to a great start.

Four Places I’ve Worked

  1. My mom’s office, folding statements and putting stamps on things.
  2. Proofreading for family here and there.
  3. Self-employed with Etsy.

Four Favourite Hobbies

  1. Writing
  2. Reading
  3. Video games
  4. Watching TV shows for an unhealthy amount of time.

Four Things I Like to Watch

  1. YouTube
  2. Gilmore Girls
  3. The Bold Type
  4. People. It’s a big help with writer’s block!

Four Things I Like to Read

  1. Other blogs
  2. YA Fiction
  3. Sci-Fi/Fantasy/Paranormal
  4. Books before watching their movie adaptations.

Four Places I’ve Been

  1. Florida
  2. Mexico
  3. Aruba
  4. Cape May

Four Things I Love to Eat

  1. Macaroni
  2. Dessert
  3. Krave cereal
  4. Potatoes. Any kind of potatoes.

Four Favourite Things to Drink

  1. Lemon Propel
  2. Milkshakes, extra whipped cream, paired with french fries.
  3. Hot chocolate, extra whipped cream, and some chocolate sprinkles.
  4. Iced lattes, extra whipped cream (only when I’m so fatigued that I don’t mind risking tachycardia and a headache)

Four Places I Want to Visit

  1. London
  2. New Zealand
  3. Seattle, Washington
  4. Portland, Oregon

Four Bloggers I’d Like to Tag

Anyone who’d like to do this! I was going to write that it’s a good way to connect with your audience, but honestly I just enjoy filling out questionnaires.

The Blissful Art of Not Caring

 

becca-tapert-357496

Photo by Becca Tapert on Unsplash. [Image Description: A girl sitting on the edge of a hill. She’s looking over a lake surrounded by mountains with her hypermobile arms in the air, flashing “rock on” signs with her hands.]

“We’re adults.
When did that happen?
And how do we make it stop?”
– Meredith Grey, Grey’s Anatomy

When this whole chronic illness thing began, or at least when my mom and I started looking into my symptoms, I didn’t care. I didn’t care about the tests or the treatments or the medications. I just went with it and trusted that the doctors and my mom knew what they were doing. During appointments with my doctors while we were still searching for the big answers, after a certain point I would check out. It was usually after I explained where it all began and listed my symptoms, but then I would check out. My mom would take over, my mind would wander elsewhere, and I didn’t care because I’d been through that appointment twenty other times with other specialists who promised they’d figure out what was going on with my body. Spoiler alert: very few of them kept their promises.

This time, this round of specialists, this past year… I care. More than I ever have before. Since transitioning from pediatric to adult doctors, I’ve had to reclaim some of my independence. I’m the one filling out paperwork and signing consent forms. I’m the one making decisions about which treatments to pursue and what medications I do or don’t want to try. The stakes seem higher now.

It’s really friggin’ terrifying.

When I was a teenager, my “life” seemed so far away. I had years before I would become an adult and have to handle all of this on my own. I hid behind that, I think. I’m not a decision maker. I don’t like uncertainty. There are too many variables, too many risks, feelings could get hurt and every choice has a consequence. Decisions are too final. Pair all of that with fatigue and brain fog and I can’t make a decision to save my life.

I’ve come to realize my “checking out” during appointments was a coping mechanism. If I detached myself from the situation, didn’t pay attention while my doctor discussed my case with my mom, and didn’t do any research for myself, then I wouldn’t have to face it. What I didn’t know couldn’t hurt me. The decisions were not in my hands and I hid behind that. It was my comfort zone. Now… It’s really friggin’ terrifying, okay?

Like I mentioned above, I didn’t care when it came to tests and scans and treatments. Fine, I’ll swallow that camera pill. Sure, I’ll eat those radioactive eggs. Yeah, I’ll go under anesthesia so you can stick cameras in places I don’t want to think about. Whatever, I’ll lay back as you put needles in my feet. Sure, why not?

Now, I’m aware. By legal obligation, I have to be aware of the risks and possible complications. I have to be aware of why we’re going for this test and trying that drug. There’s no more pretending nothing bad will happen and handing the real decision making off to my mom. I’m twenty-one years old, my doctors address me now.

I find myself worried about what this pelvic ultrasound I’m going for will show. There are symptoms I’ve put on the back burner while we were focusing on POTS and gastroparesis and leg pain, but we’re finally exploring them and I’m afraid of what we’ll find.

What about this new psoriatic arthritis treatment plan? Did you know in rare cases Methotrexate can cause missed periods and infertility? My period was a week-and-a-half late and for once I actually cared. I cared about possibly losing my hair, and my ability to become pregnant, and whether or not my veins will finally give up with these added Remicade infusions. I was so detached before and I don’t even think I was aware of it.

Obviously I knew I had POTS and Gastroparesis and Chronic Fatigue Syndrome and hypermobile Ehlers-Danlos Syndrome and everything else that’s going on with my body. I knew I was/am chronically ill and that none of these things have cures so I’d be dealing with them for the rest of my life. I knew what each diagnosis meant and I accepted the reality of it all, but I wasn’t really paying attention to the details. I didn’t research other treatment options or ask any questions… I was complacent. And now I’m not complacent. My eyes opened, the glass ceiling shattered, and I am aware.

There are moments, like right now, when I wish I could go back to not caring.

I Swear I’m Not Contagious

 

alexandra-gorn-471463

Photo by Alexandra Gorn on Unsplash. [Image Description: A girl laying in bed, holding her white bed sheet up, covering her face from the bridge of the nose down.]

I get “normal people sick” easily.

Since I’m housebound for other chronic illness reasons, I’m not exposed to as many germs as I would be had I been in a crowded public place, such as a restaurant or shopping mall. When I do leave my house, I take my Vogmask with me, which helps filter out the germs that I would’ve been breathing in.

The Vogmask doesn’t look like those regular paper surgical masks you see in medical dramas on TV. That’s part of the reason why I like them so much. However, as you might be able to imagine, you get a lot of staring from people who may not understand why you’re wearing it. I suppose the first thing that pops into a stranger’s head is “contagious” in the form of a big, flashing neon sign. It’s fine; I expected as much when I made the purchase.

What I didn’t expect were the stares from medical professionals.

When I was visiting family in the hospital last weekend, I of course wore my mask. I almost left it in my purse, but I’d heard they were crowded with flu patients recently, and I was not about to chance that. When my dad and I checked into the visitor’s station, the person manning it thanked me for wearing a mask. I guess they thought I was the sick one. Which, let’s face it, I am, but I’m not contagious! I almost corrected him, but people have a hard enough time hearing me without the mask.

We got in the elevator with other people and I think one of them was part of the staff, but I don’t remember. That’s when the staring began. Again, I expected this, and I was pretty used to it already with my knee braces and wheelchair. I tried to smile to make them more comfortable, but, you know, the mask was in the way… I also wanted to tell them I was wearing it for my protection, not theirs. I didn’t, though, because I was tired and getting kind of hot. Those masks are great, but damn does it get hot under there sometimes.

A couple of days later, we went back to the hospital to pick up our patient*. I wore my mask again. As we were leaving, we said goodbye to some of the nurses that took care of our patient. When the nurses saw me, they looked at me longer than they did everyone else. I get it, they’re curious, but it’s a medical mask… I don’t know. If they had asked questions like “where did you get that?” or commented on it at all, I wouldn’t feel the need to write an entire blog post detailing my experience. All they did was stare and it made me uncomfortable, to be honest.

It wasn’t even just that one group of nurses. This went on for the rest of our time in the hospital until we reached the car and I took my mask off for some fresh air. I’m obviously not going to let this one minor uncomfortable experience deter me from ever wearing my mask in public again… I’d rather get stared at and stay relatively healthy than entertain my vanity and risk catching a cold. Or worse, the flu!

I wanted to write about this to share my experience and I was curious to see if any of you have had similar encounters! By far my favourite as far as public reactions go is when I stand up briefly from my wheelchair to reach something. Priceless.


*I’m referring to my family member as “our patient” for their privacy.