So yesterday was the big day.
My first Remicaide infusion after a year of failed experiments attempting to treat the inherited, nebulous auto-immune condition that after a 10+ year remission had reactivated after the birth of my son, and has been kicking the crap out of me ever since.
Everyone thinks that because I’m sick so often, have to avoid large public gatherings, and have to enforce strict hand-washing protocol in my house and carry hand sanitizer at all times, that I have a weak immune system. I do, but that’s because it’s been chemically neutered. My immune system is actually very strong. So strong in fact, that if I weren’t already taking drugs to suppress it, it would not only destroy my own body, it would beat up my loved ones and pets, then go next door and beat up the houseful of post-grad guys living there also, before climbing through this screen to go a round with you for good measure. The problem is, it’s also very stupid. The only thing it WON’T reliably fight is things like viruses and infections.
Thus was Remicaide finally prescribed.
Remicaide is a TNF blocker, that prevents the body from producing certain protiens, normally associated with healthy immune response, but over active in auto-immune patients, resulting in an immune system that attacks healthy tissues in the body, such as joints, heart, lining of the gut, all kinds of fun things that auto-immune patients live with.
It’s also prohibitively expensive. Yesterday’s infusion came with a price tag of $6487.14. And that was just the first dose.
For this reason, prior to agreeing to cover the cost of Remicaide, my insurance company insisted that I had to try and fail on every other possible option under the sun. So I’ve spent the last year as a walking science experiment, with the disease continuing to progress while I’ve been prescribed antidepressants, steroids, anti-inflammatories, immune suppressants and even an anti malarial. Side effects (in addition to the chronic pain, fatigue, internal bleeding etc. that I was already dealing with) have included dizziness, weight gain/loss, migraines, vision problems, confusion, mood swings, sleep disorders, an increased risk for a dozen different cancers later in life, nausea…the list goes on. My favourite to date being the anti-malarial, prescribed to help with pain and sleeplessness that not only successfully put me to sleep, and kept me asleep, but also caused vivid, screaming night terrors that I couldn’t wake from, as well as daytime panic attacks, while doing nothing to help with pain or bleeding.
Then my cousin observed that, on a more positive note, apart from rendering me poisonous to biting insects, and possibly causing me to glow in the dark slightly, at the very least, because of all of this, I’m far more likely than the rest of you to develop superpowers.
With this thought in mind, after jumping through the dozens of administrative hoops to get the drug approved for coverage, then several more delays due to a clerical error at the pharmacy that supplies the drug, and a persistent case of bronchitis, I was cautiously optimistic as the nurse clinician inserted the needle into the back of my left hand yesterday. At this point I figure I’m either going to get back into remission, or develop the powers of flight, super speed or invisibility. Either way it’s a win, and I can either go back to my normal life as a faceless phone-jockey for The Company That Shall Not Be Named, or go on to a new career as a superhero. Both have their advantages.
First thing I learned about IV infusions yesterday – THEY’RE FUCKING COLD!!!
While normally stored at 5-8 degrees C, the nurse clinician explained that in order to prevent shock, they do take the drugs out of the fridge prior to infusion to allow them to come up to room temperature. This sounds fine, but when you compare a ‘comfortable’ room temperature of 73 degrees F to a normal body temperature of 98.6, that’s one hell of a gap. (Yes, like many Canadians I think of low temps in Celsius, and high temps in Fahrenheit, owing to our national tendency towards hyperbole when we discuss the weather.) It’s like having ice water trickling into your veins. I was shivering before the premedication, an IV steroid prescribed to help my system absorb the Remicaide, and hopefully make it work for longer, had even finished. By the time the nurse added the Remicaide my teeth were chattering, and the IV site was aching from the cold. For this, I had the beautiful new fingerless mitts that my sister made me for Christmas. Though not intended for the purpose, they turned out to be perfect clinic mitts, since they kept the IV site warm, while still keeping it accessible to the nurse, and leaving my fingers free to work my gadgets. For the knitters in the crowd, the project kit is available from Soak and includes the hand dyed yarn, SOAK wash, Handmaid hand lotion, and a colour-matched nail polish by Essie as well as the gorgeous Clark Cable mitten pattern from Fiona Ellis. The knitter, my sister, can be found on Ravelry, or here, in her own little corner of the Internets.
When my lips started turning blue, the nurse very helpfully brought me a blanket, and a wi-fi password, but it didn’t really matter. I had thoughts of X-Ray vision and invincibility to keep me warm. Thoughts I continued to cling to when I realized that what was actually slowly being infused into my bloodstream was the Mother of all Hangovers.
It’s odd to feel a hangover creeping up your arm before it takes up residence in your skull as a screaming headache. When the nausea kicked in and the room started spinning, I just hung on to the chair and pictured myself leaping tall buildings, and smiting my enemies with my new laser vision.
This did not occur.
Almost 3 hours later, the nurse removed the IV, warned me that I might experience ‘some discomfort’, (I think that’s what she said. It was hard to focus with the room spinning) gave me a Benadryl tablet to take home in case of a delayed allergic reaction, and a little card with the date of my next treatment written on it.
I asked when I could expect my superpowers to kick in.
She looked confused and gave me a lollipop. (A green one. I hate green.)
I asked if my superpowers were in the lollipop.
She told me to go home and rest.
I tried waving the lollipop around a little, just to make sure.
My husband sighed, exchanged weary looks with the nurse, then took my elbow, and led me to the car.
On the drive home, I frowned and squinted, testing for signs of X-Ray vision or maybe super sensitive hearing.
Maybe they needed time to develop.
Sweet Hubby drove me home, checked to make sure I had anything I needed, then left me tucked in on the sofa, still disappointed that I could not, in fact, fly, and went off to finally start his greatly disrupted work day.
An hour or so later my superpower began to ’emerge’.
Apparently my superpower is vomiting.
I struggled to think of how this could be applied to saving the world from the forces of evil while simultaneously observing that if you throw it up fast enough after eating it, a chocolate chip cookie tastes more or less the same no matter which direction it’s going in. That sounds really gross, but an hour or so after that everything started to smell and taste like Varsol so chocolate chip cookie vomit was definitely my preference. So now apart from being poisonous to biting insects I’m probably flammable as well. If there’s a lamer superpower than flaming vomit, I have yet to imagine it. I suppose instead of becoming a superhero I could go out onto the Rennfaire circuit as the world’s only ‘Reverse Fire Eater’, but that’s hardly the glamorous life of derring-do that I’d been envisioning all morning.
So thank you to all who wished me well.
Still no superpowers.