What goes up must come down

When I was seven years old, I took my first plane ride to California. I was technically visiting my aunt, but we all know I was really there for Disneyland. My parents promised me the Happiest Place on Earth and I believed them.

My aunt had the honor of taking me. Holding my hand, she led me around the theme park, as I marveled at the attractions. The first item we bought was an autograph book, commencing the hunt for Disney characters. As the morning progressed, I became braver at approaching princesses. I even procured my own princess hat.

So, when my aunt suggested Splash Mountain, I was excited. I love water. She asked me if I was sure, and I said yes. To be certain, we watched several boats drop down the waterfall, as the photo kiosk captured gleeful riders.

I hopped into the seat next to my aunt and boat continued to glide forward through the towering rock walls. I grasped my aunt’s hand on one side and the handrail on the other. The first dip, a few feet, made me giggle and my hands relaxed. We drifted along the outside of mountain, and re-entered the dark cavern, this time surrounded by ducks, alligators, and bears. At each turn, new creatures sang and danced along to the catchy big band music vibrating throughout the mountain.

I snapped back to vigilance as we approached the first big conveyor belt. The boat tipped backward and I tried to determine how high we were climbing, but it was dark. I simultaneously wanted the rumbling of the boat to stop and to not stop. Finally, a small circle of daylight appeared at the top of the lift.

My aunt squeezed my hand and whispered in my ear, “What goes up must come down.”

I tried to pull my hand away. My aunt snickered. I tried to reckon with her warning. I imagined throwing a ball in the air. The ball fell. I didn’t want to fall. I was only seven years old, but I knew gravity always won. Why would my aunt do this to me?

My panic was interrupted by the sight of the tree line. I’m pretty sure I wasn’t touching the boat as we dropped down side of the mountain. The boat began to climb another conveyor belt and my aunt taunted, “What goes up must come down.”

“I don’t want to go up anymore!” I screamed.

*****

My mast cells are beating up my right kidney again. The pain got so bad I swore I’d never drink water again, but I need water to live, so I decided to try a prednisone burst instead.

I FEEL GREAT!

If you’ve never been on prednisone, it’s sort of like 3 shots of espresso, except the buzz lasts from 8 am to 4 am every day. In fact, I forgot to drink coffee this morning, as if coffee is optional. I was too distracted by overwhelming feelings of hope, determination, and joy. I spent the morning scanning documents, mending clothes, and vacuuming air ducts. I’ve eviscerated every miscellaneous pile lurking in my condo.

From there, I moved on to shopping, online AND in stores. My FitBit battery can barely keep up. I take breaks for eating, of course. Food tastes great and prednisone allows me to digest many MCAS forbidden foods like spaghetti and chocolate. It’s impossible to cook a meal without dancing.

I’ve got my ducks in a row. I’ve got my poodles in a row. I am the best version of myself.

Of course, I wish I could feel this way every day, but prednisone is black magic. The main side effect is total destruction of your body. It eats your muscles and bones, while you swell into a bulbous blob. After a few months, your can-do attitude is offset by atrophy and disfigurement. My body is still recovering from 2015, when I took prednisone for a full year.

I know what’s coming. I have already begun to taper my dose. In a few days, my heart will pound, my head will swirl, and I will struggle to sit up on the couch. I will want to sleep from 8 am to 4 am every day. I will tell my friends I feel like I am dying.

What goes up must come down, but I’m sure as hell going to enjoy this ride while it lasts.

Disneyland
Seven year old me trying to hold it together after a long day at Disneyland.

9 thoughts on “What goes up must come down

  1. Interesting because an increase of pred to my usual dose (been on it 12 years) never makes me feel that way. I get anxious-depressed and go mental. Buzzing yes, but with unproductive worrying and thinking haha. Take care!

    1. Well I did have an huge dose to start with! 40mg prednisone and 120mg Solumedrol, because I could barely pee. Of course, I always worry about spontaneous meltdowns/crying. When I was on 5 mg for a year, I did not feel great, but it helped me to be able to walk.

    2. I did six months of 60 mg of Prednisone in 2010 and became a rhymes with witch. I wondered the house every night unable to sleep and felt like had 24/7 PMS. My weight and body ballooned and going off prednisone did not resolve the weight gain – being very sick on limited safe foods a year of so later is what took my extra weight off. I decided after then would only use if life or death.
      Last week suffering from a big my grandchildren shared with me that caused a mast cell flare up, I followed my doctor’s suggestion of 20mg of Prednisone for five days. It really helped and my bad knee felt better than it had in a few years. I got my kitchen boxes unpacked and cabinets organized and a few other things. Unfortunately the sleeplessness reappeared the second night and by the fifth dose looking so forward to getting off of it. Also it seems to have brought my hot flashes back where I am smoldering and drenching wet. At nearly 6 years since last period I had progressed to infrequent and fairly mild hot flashes and hope I return back to that soon.
      I did sleep the day after my last dose and am playing carchup for the “what goes up must come down” effect of them.

      Thanks for your posts!!

      Deb

      1. No I don’t get the crash either, which I guess is good? I’ve only been on them short term tho. My sister goes completely manic on them.

  2. Ah the evil pred! On one of my last go-arounds (10 years ago), I went from being bed-ridden to walking 4 miles a day overnight.
    Then the paranoia set in, I organized and labeled all my photo albums because I was so fearful that I was going to die and the person that found them wouldn’t be able to make sense of it all.

    I was hungry ALL the time! I couldn’t control myself. It was hard to explain the the conflicting feelings of a painfully full belly at the same time an altered brain was believing I was starving. I joined Weight Watchers so I could learn their Point system and game it so as to eat as much as I desired and not gain weight. I ate high volume of low point food. It worked because I was more focused on volume rather than exceptional taste (but everything tasted good!)
    Now I have Osteoporosis. And I am still here, living my best life, cheers to you 🙂

  3. I once did 100mg a day for 2 months, and then the world’s longest taper back down to 0.
    My home was never cleaner than it was during that period of time.

Leave a Reply