personal

I almost died last week.

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. (more…)

The Horror Is Mine

My social circle has been remarkably supportive of the traumas and challenges I’ve faced over the past year.  A few of its members, however, haven’t yet grasped the nature of the rift that has emerged between me and my parents.  They keep telling me to watch how viscerally I criticize them and to intersperse my rage with acknowledgement that the people who raised me are doing “the best they can” to wrap their heads around my situation.  At their worst, they tell me not to “air the family’s dirty laundry,” failing to grasp that one of the foremost weapons against their particular secrecy-based abuse dynamic is the cleansing light of day.

Every time I hear those phrases, my mind flits back to the worst nightmare I ever had, in June 2015.  This was around when my parents first started losing their minds over seeing my long hair and painted nails over webcam, and sent the first of an onslaught of Emails that stabbed directly at what I was going through.  I was terrified that, in their bigotry, they would do something extreme.  They threatened to cut off my financial support if I breathed too loudly in their direction; what “punishment” would they impose for joining what my culture regards as its most outré abomination?  What would I face if I ever again put myself at their mercy by sleeping under their roof, as I did for two weeks every year?

Those are the fears they tell me to put aside when they plead for reconciliation.

Those are the fears I dreamed about that night.

Those are the fears I wept about that morning.

Content note for oneiric horror, kidnapping, and emotional trauma.

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The Little Sewing-box Star

little plastic red starWhen I was a little girl, I was playing with my mother’s sewing box looking for something pretty. I found this little button or piece of a pendant or something in the shape of a small five pointed red star. At the time I loved the colour red, and I loved star shapes, so I took some thread and turned it into a necklace.

When my father saw it he froze solid. For a few moments he just stared at me, then told me with excessive calm to take it off. Shocked at seeing my father like that, the way his face paled, the way his eyes looked like someone had just stuck their hands directly into his chest and squeezed his heart, made me take it off and put the thing back in the box.

Later my mom told me that the star was a symbol of bad things that had happened to them in Poland before they came to Canada. That it brought back bad memories for them.

It was innocence only, and my father knew that. He didn’t scream, he didn’t curse or yell or threaten. He didn’t even explain. But that star disappeared.

Years later, I learned about Stalin and Soviet Russia and the Communist takeover of Poland. Over the years I learned about solidarity and bit by bit my father’s involvement with it. I learned that my father was blacklisted. I learned that my parents as newlyweds, were separated for 6 months while my father got out of the country and they worked to bring my mother down as well. (more…)

Deep Master, Deep Issues: Reflections on Four Years of Dungeon Mastery

Last weekend, I finally managed to bring my D&D campaign to a close.  I started conceptualizing the story that became this campaign close to ten years ago, in a different city, with different ambitions.  It was part of my first serious attempt to be a Dungeon Master, after two previous games that devolved into high-powered absurdity.  It evolved hand-in-hand with the expansion of my campaign setting, a homemade version of the detailed worlds published for reference and inspiration.  The end of this long-running game gives me a lot to think about, including what to do with all this extra free time.  Somehow, I think I’ll find something.

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The Cost of My Disability

Once again I am left in a position of asking for help to cover what is an essential medication for the management of my symptoms. As many of you have doubtless figured out by now, I use medical marijuana to treat my Crohn’s disease.

The medication acts on two fronts. The first is symptoms management where it relieves the severe pain and nausea caused by my conditions. The second is by making the other medication I am on, more effective.

I’ve mentioned time and time again that it can be expensive, but for once, I am going to share specifics.

Every once in a while, someone will complain about the fact that I ask for monetary assistance. I get advice on how to “save money” which often ignores the reality of my situation.

So just how much does my medication cost?

Medical Marijuana ranges from $6 per gram to $12 per gram. Thanks to compassionate pricing, I get a 20% discount with my dispensary. I do my best to buy the cheap strains as much as possible, but often those strains are not the ones that work for my conditions.

More frequently I end up needing the strains that cost me $7.60 per gram.

My prescription is 2 grams per day.

That adds up to at least $465 in an average 30 day month. If the cheaper strains are not available, that total can go up to $600 per month. The choice literally becomes, do I buy groceries or do I buy my meds. Frequently what happens is I use the money we used to pay down our debt on the credit cards, to then purchase my medication, in effect never actually making any improvement in the debt situation. The remainder comes from the overdraft protection, which in turn can cost us up to $5 for each day that the account in overdrawn.

Some months it is a matter of deciding which is more important, my meds or groceries.

Medical Marijuana has not been covered by Trillium or ODSP since the rules surrounding prescriptions were changed by Harper’s government. It is also not covered by any other insurance, even if I wasn’t prevented from accessing other forms of insurance due to my “pre-existing conditions”. This despite the fact that it is a known treatment for chronic pain, chronic nausea, and a variety of conditions.

Every month means an overwhelming amount of anxiety as I try desperately to come up with some way to get extra money, so that maybe just this once, we don’t overdraw and can start the month without being in the red. Overdraft protection is supposed to be a failsafe, not a line of credit. The anxiety of course makes my conditions worse, increasing pain, increasing nausea, increasing blood loss, to the point where medication becomes even more of a priority.

It’s a desperate circle, and one I hope someday to be able to escape. But in the meantime, I ask for help.

 

 

Resolutions and My Mother’s Bike

For 2016, I am hoping to spend more of my time writing. I am particularly interested in working on and even finishing some various fiction projects.  I want to write more stories, both short and long, produce more blogposts, and generally get in the habit of writing a lot every day. Writing is like a muscle, it needs exercise.

Among these projects are:

1. Hunting Blackbirds: the first book in a series set in a world where people are divided into three categories and which one you belong to determines how human you are. It explores issues of racism, ableism, sexism and oppression. Total written: 46, 382

  1. The Tsarina and the Wizard: a retelling of a Slavic/Ukrainian myth about a beautiful Tsarina imprisoned by a heartless wizard. Explores queer themes, and gender bends rolls. Total Written: 687
  2. Cassandra Prophetess of Troy: a retelling of the story of Cassandra that plays with the idea of what prophecy is and what it means not to be believed.
  3. Beauty and the Beast: What if beauty was the beast? And what if there is more to the story than we really know.
  4. Book 2 of Hunting Blackbirds: Where I explore what happens after the hunt.

One of the best gifts I received this Christmas is from my sister. It is a writing prompt book make up of 642 things to write about. I plan on working my way through the book this year, working on at least one prompt a day. Some of them probably won’t generate much, some might produce stories, but some might end up as blog posts. To that effect I start with my first one, written before midnight, because why put off something good.

Write about something that was stolen:

I went to a high school that was about one and a half km from home. Deemed close enough to walk, and it was. I would walk to school every morning and walk back in the evening. Sometimes, if it was raining, or particularly bad weather, or I was running late, my parents would give me a ride to school. I didn’t particularly like walking, especially as my book bag got heavier and heavier. My joints would ache all the time, and whenever I brought it up the answer was always the same. I was out of shape I needed to lose weight. Except even when I was going to the gym regularly, I still found I had the same problem. Back problems ran in my family, so I didn’t understand why it was so impossible that there was something really wrong with mine.

Finally I came up with a solution that would work for me. My mother had an old Raleigh bike that she had had for I think something like a decade. It had come with us from Saskatoon. They had gotten me a great bike for my birthday, but were worried about it getting stolen, so they told me to take the old bike. I loved that thing. It spelled freedom for me in so many ways. Because I could rest my backpack on the seat, my back didn’t hurt as much. Moreover, because I could ride much faster than I could walk, it gave me more time to myself. I could take the long way home and have a few moments when I didn’t have to face anyone else.

I didn’t have to meet expectations, I didn’t have to perform, I could just be me alone, riding my bike. I don’t know how many stories and fantasies I played out in my mind during those rides. The benefit of the bike was so great, that even when I walked with friends, I would still bring the bike with me.

While at school, I would lock up the bike next to the cafeteria door. The lock I had wasn’t great. Sometimes it would come undone for no reason, even when I was sure I had locked it. But still, I was lucky. Even when it unlocked, it was ok. I would lock the bike next to the cafeteria, except of rare occasions when something kept me from it. A cluster of wasps that made it impossible for me to lock it there, or perhaps too many other students were there with their bikes. When that happened, the only chain-link that would work for a lock was closer to the street.

It was on one of these occasions that my freedom was stolen from me. The lock had come undone and someone took advantage of the opportunity. My beautiful red and white bike, my mother’s Raleigh, was stolen. And I was devastated.

Now years later, I don’t have a bike. I can’t ride the same way I used to. The damage to my hip is extensive enough that I would need a custom bike to make sure I didn’t injure myself. Now more than ever though, I miss that mobility. I find it harder to move more and more. The aches in my joints, not as bad as when I had my real problem, are still becoming more pronounced. I should say something to my doctors, but I’m afraid, because this time I know I’m fat. But what can I do? I go swimming twice a week as much as I can. I even have a swim buddy to stay accountable. My energy levels are so depleted between the depression, the constant anxiety over money, the increase in pain over the last several months.

I’ve started using the motorized carts at the stores. I feel guilty every time I do. I feel like I am failing somehow, like it is the ultimate proof that I’m a lazy fat-ass. But I do it, because the alternative is that I come home so depleted, that my whole day is eaten up by one errand. I can’t afford that.

I wish sometimes that I could have one of those scooters at home. Then I could spend more time, exploring my neighbourhood. Maybe it would be easier to take the dogs outside more regularly. Explore the city a bit more. I can’t afford it though, and I’m scared to ask my doctor about it, because I don’t want to hear again about how all my problems are just caused by my weight. And so, sometimes I dream of my mother’s bike.

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Diary of a Failed Laboratory Method

My thesis is one chapter away from completion, and it’d be three chapters away if I hadn’t made a strategic decision to give up on a certain measurement I’d been hoping to make.  That measurement has been a pox on my career since I first proposed it.  Even as I acknowledge that actually getting it would have been an impressive boon for my thesis, I am glad to see it go.

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