Holding on and Letting Go

Growing up, I spent a lot of time in casts, especially after the crush injury. So I’ve accumulated a lot of crutches — those metal ones the ER gives you, with the painful rubber grips. We got rid of most of them a long time ago, but there’s one pair left, and it’s been gathering dust in my bedroom for years. Though I have an unobstructed view of them from my bed, I forgot they were there.

It’s funny, because my dad used to tell me it was bad luck to keep a pair of crutches in my room when I didn’t need them. But I was in one cast or another for so many years that, by the time I stowed them in the garage, I’d injure myself and need them again. It made the most sense to keep them close.

I can’t remember the day I set them down for the last time. It wasn’t after an injury; possibly chronic pain?

My dad used to say it’s bad luck, but I’ve come to think of this particular pair of crutches as good luck. I’ve had injuries since, don’t get me wrong. Hypermobile Ehlers-Danlos Syndrome, remember? However, I haven’t needed the crutches.

I’ve thought about getting rid of them. Especially now, in the process of decluttering the room in which I spend all of my time. But how do you let go of your good luck charm? I imagine it like a sports enthusiast’s lucky jersey. Do I really want to risk breaking this winning streak?

More than that, I’d be saying goodbye to another piece of my childhood. Which seems silly, now that I’ve typed it out, but true nonetheless. I have fond memories of swinging my body down sidewalks, conquering stairs, and racing my brother. And I know I don’t need a physical reminder. I know I could simply take a picture of them and look at said picture when I’m feeling nostalgic. The fact still remains: letting go is hard.

Of course, now I have an image of me, fifty years from now, with the same pair of crutches staring me in the face. I can only hope I’m not still living in my childhood bedroom… Yikes, maybe I should get rid of these things!


toa-heftiba-274947

via Unsplash. [Image Description: A flatlay in what I presume is a cafe. Two bright yellow mugs of coffee sit on matching yellow plates. A pair of sunglasses sits, folded up, to their left. A small, white picture frame with a quote inside sits below. The quote reads, “Inhale the future, exhale the past,” in all caps.]

We Can Wait (But We Can Feel, Too)

Sideways photo of budding yellow flowers against a partly cloudy sky.

Photo by Masaaki Komori on Unsplash. [Image Description: Sideways photo of budding yellow flowers against a partly cloudy, blue sky.]

I have a lot of feelings.

My family’s busy prepping the house to ride out this pandemic. Stocking the kitchen. Disinfecting handles, knobs, and switches. Refilling gas containers. Refilling meds early, where possible. So we’ve been busy, and I have a lot of feelings, but I haven’t slowed down enough to feel them.

Until now.

We’ve been prepping our house, but also our lives. Cancelling plans. Deciding which doctor appointments can be pushed. Making the choice to press pause on my IV saline appointments. Pushing off an important consult that—fingers crossed—could get me functioning again. This, combined with enlightening gastro test results, gave me hope.

Before the global pandemic, anyway.

So I’m grieving. Again. For a life just beyond my reach. I’ve been waiting this long, right? A few more months can’t hurt. If it means the safety of millions of people, I can wait. But I can grieve, too.

And so can you.

Living vs. Surviving

A close shot of a brown, wooden bookshelf. An assortment of books fill the shelves There's a pair of folded up reading glasses on the top shelf.

Photo by Mari Potter on Unsplash. [Image Description: A close shot of a brown, wooden bookshelf. An assortment of books fill the shelves There’s a pair of folded up reading glasses on the top shelf.]

I often write about balance. My eternal struggle to find it. Today, for what feels like the first time, I caught a glimpse at what my version of balance looks like.

My day started at a hospital, aggravating my orthostatic intolerance in the name of gastro testing. My mom and I had been staying in a nearby hotel for two nights already, knowing I wouldn’t have been able to travel after fasting (no food, water, or medication). That morning, we decided to check out a day early, missing our dog and the comfort of our own home.

My day started at a hospital, but they only needed me for a ten-minute scan. With so much extra time on our hands, and a fresh dose of Midodrine in my body, my mom and I thought we might do some sightseeing.

Then decided it was too damn cold, so we looked up a used bookstore instead.

This place was like a TARDIS: bigger on the inside. I was surrounded by stacks and stacks of books, covering every inch of wall space, and mazes of tables and carts in each room. My mom and I separated, aiming for different genres.

For that short hour, it was just me and a few other book lovers among thousands of fictional characters. Can you imagine a more perfect afternoon? I can’t. I hadn’t stepped foot in a proper bookstore in…years. I stepped foot in my local library, months ago, just to pick up the library card I’d electronically applied for, but other than that? Nope.

It was wonderful. I felt like a person, not a patient. If you’ve read my blog before, you know these moments don’t come often but I revel in them when they do. There’s rarely a moment in a day that goes by where I’m not managing one illness or another. Whether that means prepping for upcoming doctor appointments, or practicing self care after treatments, or researching the next scary thing my doctors want to try, or keeping up with my psoriasis regimen, or dealing with new symptoms that are always cropping up…

Well, you get it. My point is, for the entire hour in that bookstore, I barely thought about my illnesses. My cane was an extension of my body; a third leg that warranted no special attention. I was simply a twenty-three-year-old woman in a bookstore. And holy hell was it refreshing.

Balance. Two books closer. Will I be bedbound for the next few days because of this adventure? Yes. At least I’ll have books to read.

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.]

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.

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.

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.)

Chronic Illness Flare Fog (Or Hibernation)

 

Photo of a woman sitting on a hilltop, looking out at the ocean's horizon. The sun highlights her silhouette, like a small miracle.

Photo by Artem Kovalev on Unsplash. [Image Description: Photo of a woman sitting on a hilltop, looking out at the ocean’s horizon. The sun highlights her silhouette, like a small miracle.]

If nothing else, chronic illness has taught me to take advantage of the little moments.

Breaks from my symptoms are few and far between these days. Last week, for example, I took the few less dizzy moments I had to check in with a friend, thank family for their birthday gifts (an entire month late), and update the listing photos of an old bracelet in my Etsy shop (Project Relaunch is slow going, but it’s going!). You get the idea.

It’s so easy for me to get lost in a chronic illness flare fog. I call it hibernating, because frankly “chronic illness flare fog” is a tongue twister. When I finally emerge from hibernation, I am continually shocked to find the world went on without me. Birthdays, anniversaries, movie nights, and other opportunities to support my friends and family pass by and I can do nothing but watch from afar, through social media… If my foggy brain even allows me to remember those important dates are happening in the first place.

It’s frustrating. Being sick when all you want to do is hype up your friends on significant days of their lives is frustrating! Of course, they always understand, many of my friends are chronically ill themselves, but that almost makes me feel worse. Here I am, surrounded by amazing and lovely people who probably don’t feel well themselves, and my body can’t cooperate long enough to show up for them for five measly minutes. They forgive me. I try to forgive myself.

So, the little moments. The little moments — where I’m granted a tiny break from the hell one illness or another has brought upon me — I treasure. I treasure them always.

Miralax Tips & Tricks

Flatlay of a pink smoothie with berries on top. Green foliage branches are scattered around it.

Photo by Brigitte Tohm on Unsplash. [Image Description: Flat lay of a pink smoothie with berries on top. Green foliage branches are scattered around it.]

The last time I was under the care of a gastro specialist, I was in high school. I haven’t chosen a new one since, which means gastroparesis and GERD have gone untreated for at least six years. My symptoms are not as severe as they once were, but that doesn’t mean I no longer have them.

All of this is to say I started taking Miralax again. Is it helping? Debatable. But I like the ritual. I imagine it brings the same comfort as if I were making a cup of coffee or tea, though I rarely drink either.

Miralax Tips & Tricks

  1. Start off at a low dose and increase as needed.
  2. Powder first, then pour your drink.
  3. It’s tasteless, unless you mix it with water or milk. Learn from my mistakes.
  4. The powder tends to stick to ice. If you want a cold drink, put it in the fridge first.

I Stopped Fighting

A baby against a yellow backdrop with their fists outstretched.

Photo by bady qb on Unsplash. [Image Description: A brunette baby with their fists held together, arms outstretched. They’re standing against a yellow backdrop.]

I’m two and a half years into my twenties, primarily bedbound, without a stable income. Not where I saw myself being at this point in my life, as I’m sure we all know by now. In the past, I’ve said I’m not bitter about it.

Who was I trying to fool?!

Hell yeah, I feel cheated! I feel angry, which is another thing I thought I had worked past years ago. With chronic illness, I’ve cycled through the stages of grief so many times. We all do. Another promising course of treatment fails, a new symptom crops up, yet another diagnosis added to the evergrowing list… It’s a lot to handle, over and over again. Silly me thought I was done. I thought I’d cried all of my tears and journaled all of my exclamation points. I was wrong.

Hope is a fickle thing. There’s a balance that, in my twenty-two years, I haven’t quite found. I was starting to feel better. Three good days in as many months, that’s all it took. Three good days spread out over ninety and I let myself hope. Hope that my new treatment plan was going as well as my doctors had promised. Hope that I’d be able to go back to school, finally earn that GED. Hope that I’d be able to spend more time with my family and my friends. With this renewed energy source, anything was possible! I knew it was fruitless; I knew I’d have to crash eventually; I knew my symptoms could never be so predictable. Yet I let myself hope. I let myself daydream about a life I’m so far from living.

Anyway, hope is a fickle thing. I did crash, eventually. Some symptoms have improved, others have not, even possibly getting worse? (I have a hypothesis, but it’s still being tested.) My point amongst all of this wallowing is grief. Grieving is a staple of living with chronic illness. We grieve for new treatments failing, for neglected friends who’ve had enough, for family members who make it ever so clear how much they don’t understand our lives, for beautiful days spent in bed, for events we can’t attend, for public accessibility nightmares, for self-righteous notes left on windshields, for piles of medical bills we can’t pay, for-

Well, you get my point.

Grieving is a permanent part of life with chronic illness. I was wrong because I thought ten years was time enough. However, I wasn’t wrong because I had hope for those three short months. I wasn’t wrong for the goals I set, or the precious amount of energy I spent. I was wrong for the years I went without hope. I was wrong for giving up, accepting that this was to be my life for the next 65 years.

I stopped fighting.

I stopped fighting.

I will not be making that mistake again.