Chronic Pain

Chronic Pain Diaries: That Old Waiting Game

On Friday I have my appointment with the good doctor to get my spine poked and prodded. First time in nearly two years. I didn’t make the connection before, but since I’ve made an attempt to be more, shall we say, self-aware, about what my body is doing and trying to tell me (insert witticism re: the separation of body and spirit), I’m very, very aware of how damn nervous I am.

My tummy has gone full wibbly-wobbly, and I’m having a difficult time kicking the nerves that have settled into my brain. Why my brain decides to go all negative-nelly every time appointments come close when the rest of the time I am, generally, fairly positive, is beyond me. Why now? Why worry about the worst outcomes now instead of focusing on what will probably be good news? Hell, why not stay completely neutral until I have an answer?

I suppose after so many years of getting the obligatory check-ups at the hospital and receiving less than stellar news regarding the state of my spine, I just have a tendency to expect the worst. I could probably talk myself out of it, but the trouble is that this sort of nervous, negative, niggly knot in my noggin (HA!) permeates every aspect of my life. What is even worse is that I know it. I am like Muggy, the self-actualization Robot from Fallout New Vegas DLC Old World Blues who knows that his only purpose in life is to collect dirty mugs, and he hates doing it, and he despises the fact that he knows it is his only purpose. I know how my negativity impacts those around me, but try as I might I can’t kick myself back into shape.

It is classic Chronic Pain mentality. I don’t want to go to work today. I want to curl up at home with a blanket, a cup of tea, and a book. I have not one but two girl’s nights that I’ve been invited to this weekend and the thought of going to either makes me sick to my stomach because I can’t imagine a state of happiness existing, even temporarily, after my appointment on Friday.

To me, the hospital seems like a whirling black hole that I have been drifting listlessly towards for some time. Now I’m being pulled into the void and I can’t bring myself to focus on what is on the other side.

It’s problematic, because this is exactly what we are taught to avoid in CP classes. We aren’t supposed to get caught up in the negativity, but instead make a concentrated effort to imagine… well, happiness. We meditate, listen to music, write, draw, create and destroy. We force ourselves to become part of the world around us by contributing to its beginnings and ends. We focus on anything other than pain. Maybe it’s been so damn long since I’ve had to fight this mental battle, but the idea of being part of the greater metropolitan Earth makes me feel exhausted.

I know this is just a bad day, maybe two. I know it won’t last because I’m not the sort of person to let it dig under my skin and fester. I know all this, courtesy of perfectly rational thought, and yet I cannot shake the nerves. The more I try to distract myself with the larger Universe, the stronger the pull of the black hole. Whatever is on the other side, good or bad, surgery or another year of waiting, I have to find a way to get back to the old me. What is particularly troubling is that I’m not entirely certain if the old me is happy-go-lucky or doom-gloom-and-shrooms (I was trying to go with rhyming. In reality, I find fungai to be disturbing. Largest network of connected organisms? Creepy as hell is more like it.)

Two more days until I cross that event horizon. I’ll see you on the other side.

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An Open Letter to an Awful, Just Terrible, Doctor

Dear Awful, Absolutely Terrible Doctor,

Bravo and congratulations! You, madam, have the healing prowess of a druid, or perhaps some sort of automaton. You have healed me of all which ails me. Goodbye chronic pain, hello bright, shiny new day without chronic pain.

Except, wait, no. That’s not right at all. No, sorry, what I meant to say was Bravo and congratulations. For the first time in thirteen years of suffering from chronic pain, you have made me feel like a drug seeking addict.

 I guess that says something about my experience with the health care system thus far. I’ve been very lucky with all the doctors and nurses I’ve dealt with. That is, until I had to deal with you. (more…)

Chronic Pain Diaries VII

I wouldn’t say I’m the sort of person to put things off, but really, when it comes down to it, I am. I put off making wedding decorations until the last minute. I put off sending in my Student Loan repayment information. I have been putting off getting a drivers license since… well, I guess at least ten years now. I don’t mean to put things off. I think I just have one of those minds where the best intentions become very quickly overshadowed by other things. New ideas for books, character development, shiny things, is that a popcorn kernel stuck between my teeth? I get distracted by the little things in life because, and I say this with no shame whatsoever, the little things are what get me through the day.

I’ve been putting off making an appointment with my surgeon, my “Once a year check-up” for about nineteen months. Close enough, in case anyone is counting. It wasn’t because I was busy. Far from it. My health is a major priority in life and I would have easily been able to make the necessary phone call had I not been utterly terrified about what the results might be.

I try not to think about the fact that my lower back is on the cusp of needing surgical intervention. To think that I am one degree away from surgery. A single degree of change, the slightest movement, could lead to my spine being thoroughly and utterly fused for all eternity. At least until they discover some sort of spine-acid which cleverly devours specific parts of bone, thus freeing my from my calcified cage and allowing me to bend so I may tie my shoes while standing once more.

Oh, to dream.

One degree makes all the difference, and given that over the last few years it hasn’t jumped from 49 to 50 degrees, you’d think I’d be fairly confident. My spine is perhaps the only area in which I am a doomsday believer. I notice aches and pains and clicks and grinds that weren’t there a year ago. I notice that when I lay flat on the floor my body contorts as if my lower half is trying to run right, and my upper half is trying to escape to the left. And damnit, it hurts.

So I made the call to the good doctor and booked the appointment. January 8th. It now looms like some sort of prophecy. Behold, the woman of positivity shall be fused from tip to toe. Maybe if I pretended my life was directed by more awesome prophecies I wouldn’t feel so uncertain about it. Still, I can’t help but feel as if this is the time. This will be the appointment. This will be the one degree.

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

In Which Someone, Who Won’t Be Named, Forgot Her Limits

Perhaps one of the greatest struggles for anyone suffering from chronic pain, aside from the suppression of the frequent homicidal rages and the desire to kill or be killed, is the acknowledging and subsequent acceptance of new limits. Limits imposed upon said person because their body, whether they like it or not, probably now has the structure of al dente spaghetti and a single wrong move will result in hours if not days or even possibly centuries of excruciating pain.

Maybe it’s because I am young, or naive, or have the mythical sense of invincibility, which I am told people my age suffer from, but I just do not know my limits.

Oh sure, I can grasp the psychological impact of chronic pain. I can deal with the emotional highs and lows. I have even learned how to properly speak of my pain without resorting to vulgar swears. Okay, that last one is a lie. Fuck chronic pain, but still. I really mastered 90% of what the CPC was trying to teach me. I am vocal enough about my pain to ensure my health professionals listen to me; I am in control of my medication; I find the sunnyside of life mildly more interesting than the other side of life.

I have not, however, learned to accept my limitations and, when recognizing said limits, I still refuse to speak of them. I am woman, hear me groan in agony as I limp towards the finish line.

At this point I would make some pithy comment about my limits not being the mountain I will die on, however yesterday I am fairly sure that is exactly what happened. Because we decided to go on a nice little hike in Banff. And now I feel dead. So dead.

In our defense, we did not plan on climbing the mountain. It is generally accepted that I am not capable of taking part in such activities unless I have all my morphine with me, and also possibly some sort of sherpa who is willing to tote my fragile corpse back to the car. We had planned on hiking/walking gently over man-made paths through Johnson Canyon to the Ink Pots in Banff. My understanding was that these Ink Pots contained some sort of magical fairy, much like The Legend of Zelda, who would grant a single wish to me if I played the Song of Healing. Let me tell you, if that damn fairy was actually there I would have wished to be transported directly back to the car.

But I’m getting ahead of myself. We had planned to move through Johnson Canyon, only to arrive in Banff and discover it was closed for repairs. Because nothing says “Preserving natural sites” by repairing them with man-made tools. No, no, I understand. It is done to prevent obese tourists from getting wedged between canyon walls. But still, we could have used some heads up.

Still, that magical wish-granting-fairy was too much to miss, so we decided to access the Ink Pots via Moose Meadows. Meadows. Sounds picturesque, right? Maybe a moose or two? Something extremely Canadian that would undoubtedly fulfill my Canadiana quota for a day or two. When the average person thinks meadows,  the generally accepted synonym is probably not mountainous switchbacks that equate to roughly 124 flights of stairs… one way. That is, I imagine, more of an antonym.

And yet that is precisely what the Moose Meadows Trail is like. No moose, not a single meadow, and somehow it managed to be uphill both ways, like some sort of Man vs Wild on Acid experience.

It was just over 11 kilometers altogether. For you American’s, that is generally accepted as “not that bad of a hike”. It was really only the uphill part that caused issues. Oh, and the deep downhill part. And the roots, the winding, the questionable animal prints and, finally, the disappointment that was the Ink Pots at the end of the journey. To be fair, had we known what we were in for by taking the Moose Meadows Trail, we probably wouldn’t have raised our expectations to the point where we imagined magical wish-granting-fairies. Had we expected five beautifully coloured, naturally occurring springs (one of which was frozen over. Yes. Frozen over) we might have arrived there thinking “Ah yes, that was quite the hike for this lovely sight. Now let us return home.”

Instead, as Alex so eloquently said, “This is fucking it? This is what we came all this way for?”

But this isn’t about the nature version of the disappointing Armstrong Cheese Factory experience. This is about limits. If I had known how difficult the hike would be for the… ahem… mildly disappointing Ink Pots, I would have listened to my body which said, roughly every 1.2 kilometers “Turn back. Just turn back. Tell Alex you are sore. You will regret this the next day.Turn back, you foolish cow!”

We did not turn back. We completed the entire hike.

Last night, after doping myself into a deep sleep, I stirred, just enough that my body shifted in the glory that is our bed. The pain was excruciating. It jolted me straight out of my sleep. Turns out I didn’t have to wait until the next day to regret the hike or those goddamned Ink Pots. I just needed to wait an hour or two after falling asleep.

I don’t want to be limited simply because my back is full of delightfully polypy degenerative arthritis. I certainly don’t want to be limited because of the constant, agonizing sensation of someone punching me repeatedly in my vertebrae. I would like to be able to hike and see the highly overrated Ink Pots (although once was probably more than enough for me.) I would like to not have to take copious amounts of morphine just to roll out of bed the morning after these adventures.

I also want my goddamned one wish, because bitch, I want a pony.

Chronic Pain Diaries VI

I imagine my pain as a black fungus that covers a forest floor. It began as an anomaly, a foreign invader to an ecosystem untouched by fire or drought. The conditions were perfect; greenery to wrap around and consume, branches and bark to latch onto, continuing the spread until the whole of my world was consumed by black, sticky fungus. I can burn it away with fire, cut it with a knife, but it will always come back. It is buried deep into the earth, into my body, and no matter which way I push it, it always comes back.

Some days are easier than others. It’s always been that way. Some days I feel like I could dance wildly, or clean the house for hours, or even go for a run.

Some days, not.

Yesterday was one of those days. Arthritis pain, muscular pain, zig-zagging lightning nerve pain. The black fungus spread another few inches through my body and made their home in my limbs and joints.

One of the most difficult things about chronic pain is the communication. How do you tell your loved ones that you feel like a foreign invader, a spirit that doesn’t belong in the body that is inherently yours? How do you explain that the pain reaches into your mind like long, limbering fingers and begins to poke and prod at you; a wild distraction.

We all have ways to fight it: Meditation, hobbies, music. But on days like that, when a reminder about pain is around every corner, music, writing, meditation… They don’t work. They have no place in that world. If anything they are an infuriating reminder that one’s body is abnormal at the very least, and an evolutionary mistake at the worst. And somehow, among the pain and the drugs and the tears, you have to find a way to explain this to your family and friends without swearing excessively or grabbing the nearest knife and waving it madly in front of you like a put-off Gordon Ramsey.

Sometimes there are no words. There is sadness and a sense of hopelessness, but no words. Because you’ve said it before, so many times. How often can you say that you are in pain and hope that it still has the same impact? It’s nothing. It’s just pain. Just every day, all-consuming pain.

An Open Letter to Alberta Premier Rachel Notley

Dear Premier Notley,

First, let me congratulate you on the NDP’s stunning rise to power in Alberta. 40 years is too long to suffer through anything without seeing some change (and I say that almost completely without irony save for the little bit which, I assume, will become clear in the next few paragraphs.) I proudly voted for my local NDP representative, although I believe she lost to the PC candidate who, as I understand it, had avoided drinking the same Flavour-Aid as the rest of Prentice’s self-worshipping team. Was that too bitter? That sounds a little bitter. I actually like our local chap; he’s always spoken up for Silverado. No hard feelings there.

(more…)