…tl;dr: that’s me in my wheelchair — this is one of my favourite photos of me and my kids… Batman, Robin, and Sparrow.
In 2008 I was asked by the local historical society to put together an article regarding the 90th anniversary of the 1918 Influenza Epidemic, and its effects on our local village. For research, I used the extensive archives of our local newspaper.
What I found was remarkable.
Using the newspapers’ archives, I could trace the disease as it spread towards the region thanks to ads for cold and flu remedies that were published before people knew there was a plague amongst them, when The Flu seemed like any other flu. There was even a small wire copy story from China that spoke of a “mystery plague“, and a missionary finding bodies in the streets of Beijing, published almost a year before the disease came to Canada.
Looking back, the ads and the wire copy were hints of the tragedies to come that could only be deciphered in hindsight.
Reading over a years worth of my own Facebook updates, I can now see something similar in my own life. Early in 2016, I had begun to fall regularly, I also started to lose weight, and get weaker. In the beginning, according to my updates, I blamed it on the diabetes, and various injuries, and the kids bringing home a virus.
It started slowly, a couple of months after first falling over and giving myself the first of three major concussions, I was having a very difficult time with stairs.
Three months after the initial fall, getting off the couch was nearly impossible, I was walking with a cane, and I could only get up stairs with assistance. I was actually driving to fast-food restaurants to use their disability-friendly restrooms, because getting upstairs to my bathroom had become nearly impossible.
And four months after my first falls, I was in the hospital, trapped in my bed, I couldn’t feel my arms or legs, I was so weak I couldn’t roll over by myself, I couldn’t dress myself, I couldn’t even sit up by myself, and I had lost 80-pounds.
…I was being told I there was a very good chance I would never walk again.
At the time my reaction, or lack of one, both in ‘real life’ and on Facebook, to each new situation all made some sort of sense. I would lose a physical capability, or a physical activity would become more difficult to perform, and I would adapt to the new situation. The adaptation would work, problem solved, on to the next one.
It was like someone in 1917 reading a small blurb about an unknown plague in China would have no reason to think, a year later, 50,000,000 would be dead worldwide. Or how something that happened halfway around the world, could explain why so many local families had to be quarantined a year later.
But, looking back on six-months worth of Facebook updates (it’s basically a 7000-word diary of my experiences), each new situation becomes an obvious reason to see a doctor, to at least recognize that something major was happening… only the end result gives clarity to each individual incident.
When I was first admitted to the hospital, in April, 2016, I was a medical mystery. My nervous system was shutting down, and the only real clue as to what was going on was my creatine kinase (CK) level was extremely high:
“A CK test may be ordered when muscle damage is suspected and at regular intervals to monitor for continued damage. It may be ordered when a muscle disease (myopathy) such as muscular dystrophy is suspected or when someone has experienced physical trauma… . Testing may be ordered when a person has nonspecific symptoms, especially when taking a drug or after an exposure to a substance that has been linked with potential muscle damage.”
It’s relatively common to have a high CK when someone experiences Chronic Kidney Failure (CKF), which had happened to me in 2013, thanks to a combination of insulin and Lithium.
Six weeks after being admitted to the hospital, and ten days after being put on dialysis, they diagnosed me with having “severe uremic neuropathy” and “myopathy” due to a combination of the CKF and the medication I had been put on to replace the Lithium that had been partially responsible for killing my kidneys.
The four months of weight loss, falling, concussions, weakness, loss of feeling in my lower body and arms, was due to Epival, a medication I had been on for almost four years before it turned on me.
Within a few weeks of the diagnosis, and changing the Epival for Abilify (and a LOT of hard work in Rehab), I had regained the ability to walk, if only with a walker. A week after that and I was walking with two canes and actually getting up and down stairs by myself, ten days later it was one cane, then I was well enough to be discharged. Two months on my own, and I was walking with no help.
…it has been a year since my body fell apart, and nearly eight months since I was discharged from The Rehab Centre, and I’m still learning how to walk again. I can get up and down stairs, I can walk around the block, I was even healthy enough to undergo a kidney transplant in January — which is something else I’m recovering from.
In total, including the time it took to recover from the transplant, I spent nearly half of the past ten months in the hospital.
Looking back over the Facebook health updates I posted last spring, it’s easy to see how blind I was to what was going on. Just like the people in my region were blind to the plague racing towards them. But none of the original symptoms — the falling, the general weakness, the weight loss — were enough for a diagnosis.
I did go to the Emergency Room on a couple of occasions, and even talked to my family doctor before finally being admitted to the hospital in April. But the doctors I saw thought it was related to the diabetes, or to the falls themselves. Without finally, and completely, falling apart, they never would have figured out how to put me back together.
…anyway, this is one of my favourite songs:
“Love Kills”, by the Circle Jerks, from the ‘Sid & Nancy Soundtrack‘ (1986) & ‘VI‘ (1987)
tl;dr: …I like some things more than others. Also, it’s a photo of my grandfather, my oldest son, and me. It’s one of my favourites.
I’ve been reading a lot recently… or a lot more than I have been in the past year, anyway. It has been difficult, thanks to the medications I’m on to suppress my immune system (ie: prednisone). Very difficult, actually.
Being in the hospital for 4.5-months out of the past year didn’t help either (April 27 to July 31, and all of January, 2017). Mostly, while laying in bed 20-hours a day, my anxiety level was so high all I could manage was to watch TV and sleep.
So, basically, my brain was shut off for half a year. In January, while I was recovering from my kidney transplant, my cousin brought me two Hemingway novels — ‘The Sun Also Rises’, and ‘For Whom The Bell Tolls’. I used to read a book a week, so I was pleasantly surprised it only took me a few days to read ‘The Sun Also Rises’… which was excellent, but that was literally the first book I’ve read since early last spring (reading Dr. Seuss to Victor notwithstanding).
So, now that I’ve been home for a few weeks, and the lower dose of prednisone is making it possible for me to think again, I thought I’d dig around the boxes of books in the basement to find some reading material. And I managed to find some of my favourite books.
And these are them… since my brain is still fried, I’ve selected reviews from Goodreads.com to stand in for the brilliant analysis I would normally offer (except for ‘Ten Lost Years’, I wrote that one all by myself).
tl;dr: …at least he didn’t burst into flames, so we must be doing something right.
…Little Victor, my oldest son, had his first confession on Saturday. It’s one of those things you have to do, being a student in a Catholic school. I don’t know what he had to confess to… I didn’t ask, but I assume it had something to do with farting at dinner time.
To be honest, I had no idea what was going on during the ceremony. The service was in French… Victor can speak the language, but I know exactly just enough French to get me into trouble (basically I can order a couple of chiens chauds and a bière froide at a hockey game).
It was the same thing when I was a kid… Big Victor, my fluently bilingual grandfather, used to take my brother and I to church every Sunday during our summers together. The services were in French. So I had no idea what was going on then either.
But over the years I did develop some hardcore skills at sitting still and standing / kneeling in unison. Apparently those skills last forever, because at Victor’s service I was up and down like a Pro-level Catholic and looking like I had some clue as to what was happening.
“Come together”, by Godsmack, from ‘Live & Inspired’ (2012)
…tl;dr: those things are real. That’s not PhotoShop. Ketchup Doritos… for sale, in a public place.
I’m diabetic. Type 2. It took me years to get my numbers under control. But they’ve been completely out of control for the past month, thanks to the prednisone I take because of my kidney transplant. My numbers are ranging between 11mmol/L and 22mmol/L, where normal is between 4-7mmol/L… I have no idea what that means translated into Imperial, but basically my blood sugar ranges from High to Pure Sucrose.
My diabetes nurse has been increasing my insulins (I take two types: Humalin N, and Humalog) every week, but the numbers have been barely moving downwards.
It’s beyond frustrating.
The prednisone is also making it hard for me to concentrate, it’s fucking with my memory, making it very difficult to connect thoughts, and, just for kicks, it’s screwing with the manic depression. I’m only taking 10mgs as of today, that’s down from 45mgs nearly two months ago. But I’m still having to push my way through the day… survive each day. I’m not getting the weirder side effects, thank God.
…those would include weight gain, severe facial swelling, cataracts, severe swelling, mouth sores, severe joint pain, just for kicks it’s give you a peptic ulcer, avascular necrosis, and stretch marks along with about fifty other things.
Fatigue… that’s another one I’ve been living with. It’s a little better since the dosage has dropped, but it would still be difficult to operate heavy machinery if I had to.
The problem is, the medication is an immunosuppressant, so it’s basically keeping my new kidney working. Which means it’s keeping me working.
It’s just that I can’t remember shit, I can’t concentrate on shit, I can’t connect shit to shit, and I’ve been in a shit mood for the past eight weeks. And I’m going to be on at least 5mg of this shit for the rest of my… well, the rest of my life anyway, which I’ll be glad to have thanks to this shitty medication.
…anyway, the song title Google-translates into “Today, my life is shit.” It’s by, Lisa LeBlanc and she’s one of my favourite artists.
“Aujourd’hui, ma vie c’est d’la marde”, by Lisa LeBlanc, from her 2013 self-titled debut.
…lets get this thing going. I created this blog in 2015, with the idea of having a place to post about my favourite things. Two-years later and that’s pretty much still the plan, but I think I’ll also include updates on what’s happening in my life, you know, the stuff blogs are made for. So, yeah, stuff I find on YouTube, and health stuff. Like, today, I had a stent removed from my body.
The procedure is called a cystoscopy. Basically the doctor inserts this wire into my… well, the place your mother told you to stop touching while you were grocery shopping. He uses the wire to grab the stent which was implanted to attach my new kidney to my bladder, then simply pulls it out. Simple. Or simply horrible. Who thinks of these things?
The cystoscope itself is “a lighted tube” which is “gently inserted up the urethra into the bladder”. A lighted tube can never, ever, be gently inserted anywhere, let alone straight down the bald-headed giggle stick. So once the cystoscope had been gently inserted up my dangling participle, the doctor then injects “sterile water” to “expand the bladder to get a clear view” of the stent. Then he hooks on, and whooosh, out of the end of my poozle weasel comes this eight-inch white plastic stent. The entire procedure, from a sterile wash of my Rodzilla while my legs were in stirrups, to the insertion of the cystoscope into my schlongasaurus rex, to the removal of the stent from my one-eyed wonder wiener, took less than a minute.
I’m still walking a little funny.
Anyway, this is one of my favourite songs. It’s about a guy who disappears, and his buddies are pretty sure he has either been disappeared by the mob, or that he’s on the run.
“Mais où est donc carnior”, by ‘Les Dales Hawerchuk’ (self-titled album, 2005)
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