The Journey Continues


Photo found on Unsplash.

Happy April 28th! Also known as the anniversary of the day I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Seven years ago today! I was fourteen at the time, so you can imagine how much has changed. For one, my health has gotten worse. Partly due to my body sucking and partly do to not having gone to see a POTS doctor in 2+ years. (I know. Trust me, I know.)

Of course, I as a person have also changed. I’d be more concerned if I hadn’t changed at all, to be honest. In April of 2010, I was a freshman in high school and two months into my first relationship. It was the second semester of school, and I’d convinced my mom and my team that I was able to go back to regular classes with everybody else. Though I gladly accepted accommodations like delayed openings and lighter schedules, and still had classes at home a couple of days per week to catch up on what I missed. Sure, I missed more days than I was able to attend, but I’m still proud of myself for trying.

Up until I was diagnosed, I had been on the train of medical discovery for two years and four months. At times it felt like it would never happen. That maybe it really was all in my head, and though it felt real to me, it wasn’t. I’m not going to sugar coat it. There were nights where I would be talking to my mom about the next specialist we were going to see and I’d break down crying because it felt like that living nightmare would never end. My middle school was fighting with us, basically telling me I was faking it to be able to stay home. I was falling dangerously behind in my classes because I couldn’t drag my body out of bed long enough to go to school. There were a handful of truancy officers called to our home, where they grilled my mom about why she was letting me stay home all the time. I’d act like I was sleeping, but I heard my mom break into tears at each visit. I know it’s their job, but it wasn’t her fault that I was sick and nobody knew what was causing it… The seventh and eighth grade sucked. Sixth grade wasn’t so bad, though.

By the time April 28, 2010 rolled around, I’d become numb to these appointments. Besides, no test could be worse than that lymphoscintigraphy I was put through at some point in those two years and four months. You’ll just have to trust me on that one.

If you’d like to read about my appointment (for POTS, not Lymphedema, which, as it turns out, I do not have) you can go here!

I’m not gonna lie, it’s been a long and emotional journey to get to where I am today. Accepting my new normal was hard at fourteen, especially dealing with the things that went along with it, like losing friends and not being able to do everything a healthy teenager is able to. So, no, it wasn’t a walk in the park- Okay, that was poor phrasing considering I’m bedbound… You know what I mean!

My point is, no, it certainly has not been easy, but I am who I am because of what I’ve been through, and that’s alright in my book. Before I go and schedule this post, I’d like to tell anyone still searching for their diagnosis to keep going. And definitely get second opinions if you feel the need because if my mom and I didn’t go with our guts, I would have accepted a diagnosis of Reflex Neurovascular Dystrophy (RND) and I would’ve thus been forced to go through an awful physical therapy boot camp that would’ve left me feeling even worse than I did at the time (because I do not have RND, I have POTS).

On that note, I’m gonna go. I hope you’re having a semi-okay-ish health day!

EDIT: It has actually been six years, not seven! My mom and I get this wrong every year, oh my goodness.


Is All Publicity Good Publicity?


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In my quest to find something new to get into on Netflix, I stumbled upon The Night Shift. It’s a medical drama centered around the night shift of an ER in San Antonio, Texas, where you’ll find a lot of the doctors used to be field medics in the military. Despite this post, I’m actually really enjoying it.

In the middle of season two, there’s this patient who we discover has a tumor in the area of her brain that tells you when you’re full. On the road to getting her gastric bypass surgery, she starts throwing up whatever she’d recently eaten, and when the doctor and the intern on her case come to her aid, the intern tells the doctor it’s gastroparesis. Gastroparesis. Solely because she was throwing up her food! When the mother of the patient asked them what gastroparesis is, the doctor tells her, “It means she can’t keep anything down,” and orders a drug I don’t remember and erythromycin.

Now, I know this is a fictional TV show. I get that the writers behind the show probably aren’t real doctors. Hey, I should just be happy they mentioned gastroparesis at all, right? But, man, this really grinds my gears! First of all, though in many cases patients with gastroparesis can’t keep their food down, and thus have to use substitutes like Ensure drinks or even feeding tubes, that is not the definition of gastroparesis. Gastroparesis, or delayed gastric emptying, is exactly how it sounds. The gastric system is paralyzed and doesn’t digest things in a timely fashion, if at all. Though erythromycin can help some patients with GP, it’s not a cure. GP is a chronic condition, which means that girl in the TV show would have it for the rest of her fictional life.

Let’s talk diagnosis. Puking, while common amongst GP patients, is only one fish in a much larger pond full of symptoms. On top of that, when someone’s vomiting from overeating, my first thought is not, “It must be gastroparesis!” But I’m not a doctor… I’ve just been living with this illness for the better part of my life. It took me about a year, give or take some months, after we started looking into my symptoms to get a diagnosis. That was after seeing multiple specialists and taking so many tests and scans, I can’t even remember them all. You know what I do remember? The countless blood tests. The taste of the radioactive eggs I had to consume for my gastric emptying scan. The pill-cam I swallowed before waiting around in the lobby of the Children’s Hospital of Philadelphia for hours and hours, not allowed to pass the time with electronics like my phone because it might’ve messed with the machine I was hooked up to. The icing on top of the cake? The colonoscopy, endoscopy, and two biopsies I was put under for to rule other things out. And this intern, however fictional, decided after three seconds of watching his patient vomit up her food that she has gastroparesis? Girl, please.

Symptoms. Like I said, puking is common, but I know patients that never experienced that with gastroparesis. I, however, used to vomit so much, I stopped eating Chinese takeout because I thought it was food poisoning. (Spoiler alert: it wasn’t. Although I still can’t look at boneless spare ribs the same way.) Along with that, there is stomach cramping, constipation, loss of appetite, nausea, fatigue, headaches, bloating, significant weight gain or loss, malnutrition, vitamin deficiencies, indigestion, etc., etc.

Do you see what I mean?

Some people say any publicity is good publicity, and maybe to an extent they’re right. However, accurate representation is just as important. There are people who will watch that episode and think they know what gastroparesis is now. I, like so many others, have already been told I’m exaggerating my symptoms by doctors, we don’t need that from our peers, too.

Or Maybe They’re Wrong


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Ribbonrx recently made a post about making friends with people they’ve never met through their blog. In it they mentioned how some people in their life don’t quite get the “chronically” part of being chronically ill, and that reminded me of a post I’ve been meaning to make!

When you’ve been chronically ill for a while, it’s no secret that you lose friends, maybe even family, in the process. The important thing to understand is that it’s not your fault. Nor is it really theirs. Unless it is their fault, in which case screw them!

I became bedridden in high school, so the way I lost friends was similar to graduating high school, only without the diploma and promise of a bright future ahead of me. We grew apart, lost touch, or were only friends because we saw each other every day in class. People grow up and move on. It happens.

Though sometimes the reason we “grew apart” was because I had undiagnosed chronic illnesses at the time and that was hard to explain to friends inviting me to places like amusement parks and, I don’t know, anything before one o’clock in the afternoon… Eventually they’d stop trying because they’d think the reason I would cancel plans so often was because I didn’t want to hang out with them, which wasn’t true at all. Then there were the rare eggs that got frustrated with the limitations of my illnesses, not being able to grasp the idea that they weren’t going away any time soon. Or ever.

Back in February, I made a post titled “FAQ People Ask About My Chronic Illnesses”. In it I mentioned that I’ve been asked if I’m still sick, like my incurable chronic illnesses miraculously disappeared. Of course my answer is always some variation of “yes” and then we usually move on, probably to one of the other questions on the list I linked to. However, on rare occasions people go off-script and surprise the heck out of me by implying that, since I’ve been ill for so long, I should be able to manage it all by now. And maybe they’re right. Maybe after nine+ years I should have my shit together, with the perfect combination of medications, a solid exercise routine, full-time job, a spouse, and twelve kids.

Or maybe they’re wrong.

Maybe POTS doesn’t have a set treatment plan like some other illnesses. Maybe POTS can only be treated symptomatically with trial and error. (A lot of error.) Maybe, after being on the same medication for an extended period of time, my body built up a tolerance to said medication. Which means I’d have to start all over again because the new medication isn’t playing well with others, all the time afraid there won’t be anything left to try. Maybe, just maybe, being bedridden on and off for almost a decade of my life isn’t as simple to fix as it may seem, Aunt Judy!

(I don’t actually have an Aunt Judy. That I’m aware of.)

There was a point. What was my point? I completely lost my train of thought thanks to brain fog, so your guess is as good as mine. Probably something about not judging a medical book by its cover. Or maybe I just needed to vent a little. In any case, thanks for hearing me out.

March Goodreads Reading Wrap-Up

Unfinished edition! Yeah, I wasn’t all that impressed with these two books. You win some, you lose some.

Miss Peregrine's Home for Peculiar Children Title: Miss Peregrine’s Home for Peculiar Children (Miss Peregrine’s Peculiar Children #1)
Author: Ransom Riggs
Genre: YA, Fantasy
Average Rating: 3.88/5 stars
My Rating: 3/5 stars

Goodreads Description:
“A mysterious island. An abandoned orphanage. A strange collection of curious photographs.

A horrific family tragedy sets sixteen-year-old Jacob journeying to a remote island off the coast of Wales, where he discovers the crumbling ruins of Miss Peregrine’s Home for Peculiar Children. As Jacob explores its abandoned bedrooms and hallways, it becomes clear that the children were more than just peculiar. They may have been dangerous. They may have been quarantined on a deserted island for good reason. And somehow—impossible though it seems—they may still be alive.

A spine-tingling fantasy illustrated with haunting vintage photography, Miss Peregrine’s Home for Peculiar Children will delight adults, teens, and anyone who relishes an adventure in the shadows.”

My Thoughts:
I was able to get through 3/4 of this book before I decided to put it down for good. I hate that I couldn’t finish it because the ending battle probably made the tediousness of the progression worth it, but I just could not get there. I found myself becoming really easily distracted, not because of brain fog, but because I wanted to be distracted. There were other things, too, like how nobody thought it was weird that the main character and his grandfather’s childhood sweetheart were so in love with each other, especially right off the bat? Is it supposed to be okay because she still looks like a teenager? Overall, I liked the concept, and the dialogue between the children was fun, but there were too many things that didn’t sit well with me.

Title: Mask of ShadowsMask of Shadows
Author: Linsey Miller
Genre: YA, Fantasy, LGBTQ+
Average Rating: 3.78/5 stars
My Rating: 2/5 stars
Publication Date: September 5, 2017

Goodreads Description:
“Perfect for fantasy fans of Sarah J. Maas and Leigh Bardugo, the first book in this new duology features a compelling gender fluid main character, impressive worldbuilding, and fast-paced action.

Sallot Leon is a thief, and a good one at that. But gender fluid Sal wants nothing more than to escape the drudgery of life as a highway robber and get closer to the upper-class―and the nobles who destroyed their home.

When Sal steals a flyer for an audition to become a member of The Left Hand―the Queen’s personal assassins, named after the rings she wears―Sal jumps at the chance to infiltrate the court and get revenge.

But the audition is a fight to the death filled with clever circus acrobats, lethal apothecaries, and vicious ex-soldiers. A childhood as a common criminal hardly prepared Sal for the trials. And as Sal succeeds in the competition, and wins the heart of Elise, an intriguing scribe at court, they start to dream of a new life and a different future, but one that Sal can have only if they survive.”

My Thoughts:
First off, I was given an advanced reading copy of this book from Netgalley in exchange for an unbiased review.

I so wanted to like this book. I mean, come on… Sal, the main character, is a genderfluid assassin-in-training! That’s completely up my alley! Alas, I did not enjoy Mask of Shadows as much as I’d hoped. I’m all for jumping right into the action, but Sal’s romantic interest was forced on us from the first chapter and totally insta-love. While I’m at it, the whole wanting to be an assassin thing came out of nowhere, too, and didn’t make much sense. I know Sal’s reasoning behind it, but it was completely out of the blue and honestly a little far-fetched considering her as a character. Speaking of Sal as a character, the only thing I truly enjoyed about her is that she identifies as genderfluid. Aside from what I suspect is PTSD, there weren’t many distinctive qualities to her personality.

Okay, but Mask of Shadows wasn’t all bad. I enjoyed the clever one-liners at the end of each chapter, the author’s use of imagery, and the fact that Sal wasn’t a stone cold robot when she chopped that one dude’s hand off. Details like Sal upchucking right afterward and the scene where that poor contestant was flayed in a tree made me want to keep reading until about halfway through, where I stopped and decided to call it quits. Who knows, maybe I’ll finish this book one day, but unfortunately that day is not today.

Have you read any books lately? Did you love ’em or hate ’em? Tell me all about it!