Hospital

Chronic Pain Diaries: The Longest Cycle

Sometimes I imagine that I am in a time loop. That my life is only capable of extending to a certain point before I reach a door that is meant to represent change. Instead, the door leads me directly back to the beginning of the cycle. I walk, and run, and prance my way through everyday events until I reach that damnedable door. The whole process begins again.

Today was a bad pain day, fitting given that I had my appointment with the Good Doctor. It was the sort of morning where it felt like the pain was leaking from my spine and staining my hips, my thighs, and even my ass. My ass, for god’s sake. This is mechanical pain, coming from the arthritis. I assumed it’s because the weather is properly cold now. This mechanical pain is the sort that claws into your body and doesn’t let go no matter how much morphine or baclofen or kittens you throw at it. It’s a vibrant, hot, red and black pain.

In the last two years my pain has gotten worse, and with it I assumed so did my curve. Perhaps the only highlight of the visit was learning that my lower curve has settled nicely at it’s 45-49 degree range. It hasn’t moved and likely won’t anymore. Hooray for me!

But at the same time it was some of the worst news I could have imagined. 50 degrees is the magic number. That is when the specialists go from shrugging their shoulders and saying “meh?” when you ask about surgery, to rushing you into the OR and rubbing iodine over your back themselves. Don’t get me wrong. I don’t want more surgery. The concept of my spine being almost fully fused is troubling.

But I’ve learned to live with a fused spine. I’ve adjusted my life to it and I get by even without being able to bend over to tie my shoes. What I still find myself struggling with every day is the inconsistencies in pain. One day is good. One day is bad. One day is puppies and cotton candy and the next the puppies have rabies and the cotton candy is actually some sort of snake that is propelled by rockets made out of spiders. And while I can predict when snake-spider-rocket days might occur, it’s fairly hit and miss for the most part. And not knowing when I will be in that sort of pain is exhausting. You feel as if you can’t make plans, can’t make promises. You never know what sort of person you will be when you wake up in the morning.

Because the pain comes out of nowhere and it infects your life like those damned rabid puppies spreading through a daycare.

If the doctor has told me that the time had come to fuse my lower spine I would have been a-okay with that, because there is a slight possibility that fusing those two vertebrae would decrease some of my mechanical pain.

Maybe.

Then again, maybe not.

So I open the door and I walk through, back to the start of the cycle. I look back and see all my friends and family walking through the same door, yet somehow being able to reach another path that isn’t open to me. I have so many questions. When can I finally step onto that new path? What preparations do I have to make? Can I speed up this process? No. I am shunted back to the start of the cycle. Another year of waiting, of snakes and spiders nibbling on my nerves and burrowing into my body.

I’ll give myself one day to be sad, to feel a bit of self-pity that this will be another year when this cannot progress. I’ll put all my focus onto writing, of being a good partner to my husband and support him as he has supported me not only today, but every day rabid puppies and spider rockets strike me down. I’ll work and save, and in October I will go to Japan and see another culture with towering mountains and verdant plains. I’ll snuggle my cats when I feel sad and knit my blanket when I am lazily watching TV.

And I will have pain, every day, because the cycle is just starting again.

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Extra Life 2015 – A Week Late

Last week was the official Game Day for Extra Life 2015. Unfortunately I couldn’t partake as I was busy screaming at children and their parents. Now, you might be saying to yourself “Tell us something about you that we don’t know, Kathleen.” If I am to be honest, I was paid to scream at them. I was paid by my place of work. I was paid to pump up the copious parents and their wee children who had arrived for the grand opening of our American Girl Boutique. It was great fun. I spent the day meeting and talking to parents and kids, escorting them through the store as I threw on my best Ol Timey Radio voice and waved my hands around like a Wacky Waving Inflatible Arm Waving Tube Man. Some parents were even kind enough to thank me for the job I did on twitter, which was jolly good.

But, that meant while I was screaming at children, all my Extra Life buddies were busy with bloodied fingers and sore eyes, taking part in a 24 hour video game marathon for our local Children’s Hospital (which I have spoken about before.)

Well, a week later, and I’m getting off my ass to do it. Cheryl will be joining me again this year, as will Shawna. My goal is $1500, and at this point I’m only at $340. It doesn’t matter, though, because it is the thought that really counts. Sean Rooney and his team raised over 40K in the memory of their son, Dominic. That money will go directly to ACH and help them remain one of the most prestigious Children’s Hospitals in North America. We are so, so lucky to have access to the research and staff at ACH, and every year around Extra Life time I feel the need to reflect on my time as a patient as ACH.

Like most sick kids, I never really had the capacity to look at my situation with any sense of rational thought. I never looked around and mused about the remarkable things happening all around me, about the lives being saved and lost within the bright walls of ACH. I never said, “Golly! The medical research taking place here is out of this world! Surely we, as a community, ought to go out of our way to support this fabulous institution!”

I was, simply put, a dumb kid with no concept of the world that revolved around me. In many ways I am glad that my education focused heavily on rational thought. I constantly wonder if I would be capable of looking back at my time as a patient at ACH with gratitude if it weren’t for the teachings of those around me.  For Doctor Harder, who stepped into the role of a father and still keeps my graduation picture on his desk; to Evelyn, who became a close friend and comfort to my mother. To Doctor Salo, who took on my case with his dry sense of humor and, to this day, is the only person I want on my side when Skynet takes over (because he is, and I quote “Not afraid of no toaster”.)  To my teachers who showed more patience than necessary through high school, as I adjusted to my life in this new and relatively disagreeable body, who offered me books and words of comfort every time a surgery came around. To the professors in College in University, who put up with my sarcasm and helped me hone it in such a way that the energy of it went towards educating others instead of fueling my own regrets. To my mom, who stood by my side for every surgery, every x-ray and MRI, who brought Momma Bear forth when needed, and joined me in outlandish and childish commentary about other patients during the long hours in hospital waiting rooms. To my husband, who stands by my side now, through everything. Who does it without being asked, knowing that I am perhaps a bit too stubborn to acknowledge that I need him there, when the truth is I do, for every appointment.

I do this ridiculous marathon for all of you, because you taught me how to survive, and help me to do so every day. And knowing that the love and compassion you showed to me was not meant for me alone, but meant to be shared with those who I encountered as I got older. I will continue to show compassion, thoughtfulness, and rational thought on a daily basis because that is what I took away from Alberta Children’s Hospital. Every child who walks through the front door of that amazing structure is fighting their own battle, be it cancer, blood diseases, autoimmune diseases, or broken bones. They don’t know it now, but they will learn compassion and thoughtfulness as well, probably years after the fact, when they are older and capable of reflecting on their experiences.

So tomorrow, if you are having a lazy saturday, join myself, Cheryl, and Shawna as we play games of all sorts for ACH and all the kids in Southern Alberta who have, and will eventually use ACH in some capacity.

We will be streaming via twitch here, starting around 10 am MST.

Donations can be made here.

There will be singing and antics and various games. Cheryl will also stream, I imagine, as she has a much larger and dedicated audience! There will be Moscow Mules to drink (I bought a bag of limes just for this event), popcorn eaten, and lots of Beemo and Vivi time in front of the camera.

Help me support Alberta Children’s Hospital, a week late but hopefully not a dollar short. If you can’t spare a dime, then please consider sharing this with your friends and family.

Thank you,

Kathleen Sawisky, esq.

Integrity Commissioner and also Prime Minister of Canada Hur Hur