Today was my first steroid infusion. I don’t mind admitting that I was very nervous. I seem to have a talent for experiencing side effects when they are on offer. My first two drugs, fludrocortisone and midodrine both had to be stopped because the side effects were dangerous. Fludro dangerously rose my intra-ocular eye pressure. If my optometrist hadn’t noticed the rising numbers, I could have gone blind. The midodrine (my most favourite medication of all time) caused urinary retention and hypertension. Again, I had to stop.
As always, I had done my homework before today’s infusion. I knew the common side effects and the less common. I also had a moment of panic when the ward immunologist explained during her disclaimer, “…and I have to tell you, it’s rarely ever heard of, but some people do have serious allergic reactions to high dose steroids”. See? Don’t tell a girl with a rare diagnosis that things ‘rarely’ ever happen. It’s like putting a siren strobe light on my head, pointing at me and yelling at the universe
“That rare-side-effect-magnet-girl is HERE! Come stuff her up some more!”.
Of course, in the interest of self protection, I always do consider the worst-case-scenario when I am embarking on a new medication. I scan the Medsafe sheet and think ‘Can I handle that?’ If I am prepared to handle that in exchange for the benefits the drug might bring, then it’s worth the risk.
So this was the list I examined last night. It’s from the Mayo website:
I scanned the list and realised that of all those side effects, most are my current symptoms anyway (highlighted in yellow). Nothing new there. The ones highlighted in blue are not usual for me, so would be easy to spot if they turned up. I decided it was worth the risks. But there were other sites I visited, too. Ones like this one, that listed side effects I felt sure were too nice for me to ever have. Like euphoria (apparently this ranks at #36 in all on online discussions about IV steroids). Euphoria is a sense of ‘misplaced wellbeing’. Or as one of the sites describes it: ‘inappropriate happiness’! When could happiness ever be inappropriate? Well maybe at a funeral. Or job interview. Or in the wee small hours.
I arrived at the Immunology Daystay and we got underway. The Immunologist who saw me was wearing killer heels and wrote with a Mont Blanc. It was a brilliant start. I wanted to get a photo but I thought she might think me weird. She was that sort of doctor who talks to you without any hint of superiority, too. Taste and tact. Smart and sensible and kind. I liked her right away. She asked me questions and explained the process. I signed the form. They stuck the needle in my hand, taped it down and away we went. It’s the fastest infusion I have ever had; it only took a morning.
This is what I noticed:
First, a rising metallic taste in my mouth. It even made my water taste brackish. The kind lady next to met gave me a mint. She was nice. We talked about books we loved (she was reading Barbara Kingsolver’s Flight Behaviour and I am in the midst of Karen Joy Fowler’s We Are All Completely Beside Ourselves). I began to feel woozier than normal and really tired. I noticed when I got up that my legs were weaker.
Back at home, I propped myself up in the armchair and drank a cup of bitter tea. Then the hunger hit. I was a ravenous creature! Thankfully, an entire pomelo was on the bench (pomelo are giant fruit from my childhood in the tropics, kind of a cross between a huge grapefruit and a mandarin). I ate a whole one. What? They’re only the size of a human head! And then (shhhh) a few other things besides! Aunty Dee’s tua tua fritters with wasabi mayonnaise, a salted caramel and date cupcake. There goes my liquid diet! BAM. Delicious. By late afternoon I felt really odd. Just wrong, weak and dizzy, but different to my normal weak and dizzy. Who knew that weak and dizzy had so many different presentations? I lay and marvelled about that. All the different dizzies. I was sleepy, but I didn’t couldn’t stay asleep. I got ready for bed, hoping sleep would claim me for the night.`But there in the back of my head, there was a shiny little secret twinkling. I pulled it closer so I could see what it was.
Every little thing is gonna be alright.
‘That’s odd. So not true!’ I thought. ‘But it is true, come see’ was the thought that came back at me. I closed my eyes and this is what I saw…
Earth, from space, like you see in the movies, all that blue and green with wispy scuds of clouds. Breathtaking. But as I looked I saw that in some places there were burnt patches. I knew; those patches were the horror scenes we see on the news, we read about in books, we worry about as we hold our babies close. And then, from the back of my tiny brain, somewhere down there in New Zealand, that twinkly little thought rose up and burst through the atmosphere. I saw it climbing up. Then millions of starbursts of thoughts, from everyone else too, everywhere else, cutting vertical lines upward through the atmosphere across the entire planet. Then they bent and arced around the earth, forming a web of light that shone down over everything, even the burnt places. And there was regeneration. But new burnt patches appeared, pinpricks and vast stretches. And the arcs of light kept shining. And the world kept healing itself. One patch at a time. Links of light shining down in the dark spaces.
I opened my eyes then. Looked around my room and thought: ‘There is more good than bad’. And that little epiphany made me happy. And the happiness just sort of filled me up. Just like that. I haven’t felt happy like that for a long long time. I’ve felt content, but not so completely happy. Better than being able to hike up to a good view, even. Better than being deliriously tipsy in the kitchen, lost in the sway of your man’s arms and a good song. Better than floating on your back in a sapphire sea. A better buzz than most of life’s joys. Better than baby feet! So nice to feel that every little thing is going to be alright. So good to feel it in my bones.
And then it occurred to me. HAPPY DAYS! Far out, Rachel. I’m experiencing euphoria! For once in my life, a nice side effect! Huzzah!
And then I chatted with my dear friend, Nettie, and I rocked around the internet marvelling at it’s extraordinary wonders. I felt a growing sense of Eudaimonia (there’s a word to make you happy); human flourishing. Another thought twinkled away: this illness, this experience, it’s a process. It’s not the opposite of good, it’s just a process, like any other biological process. I can flourish from it just as well, or maybe more, even, than I could have if I were well. And I am, I will. I’m a quick study. And that thought made me even happier.
The Bobby D came into the bedroom to go to sleep then, it was already late and he was concerned. I don’t do well with poor sleep, so he suggested with that lovely man-kindness, that I call it a night. But you know what? I JUST COULDN’T. I am happy!!! I want to squeeze every last drop of this euphoria out. I told him I needed to write (that look lasered over at me) and that I would come to bed as soon as I possibly could. I repaired to the living room and lay on our lovely long velvet sofa. It makes me happy too. The feeling of my feet brushing across the nap, smooth, rough, smooth. Life.
And I wrote this down. Well, in fits and starts. I’m a bit distractable tonight! Flitting here there and everywhere in my laptop world! Loving all of the world, the light and the dark. The shiny thoughts that are gonna make everything all right. It’s all probably a bit wuwu. I hope it won’t be so nutty I will have to delete it tomorrow. Because I want to capture this feeling. Can you feel this joy? It’s so nice. It’s like one of those big round papasan chairs but instead of a cushion there is lots of sunshiney light, and I am coccooned in it; euphoric!
Goodness! it is nearly 2am already. How did that happen?
May euphoria find you some time in your lifetime too. And may it not be via drugs.