notes on gabapentin, day 6

ok, so 6 days of taking my new meds. here are some notes on it.

  • it works. i mean, it definitely stops my twitching when i’m awake. however i’ve noticed, now my twitching has stopped, that i also have nerve pain in my extremities. i just never noticed it before because i was always either jiggling my limbs or twitching.
  • i’m not worried about the nerve pain, as it can take 2 weeks for gabapentin to get rid of it. so if i still have it after 3 weeks, i’ll worry.
  • i sleep really well on it. first 2 nights i used it were on the recliner, because my neck was so stiff and sore. i never sleep well on the recliner, but those 2 nights were the best recliner sleeps i have ever had. and the third night, in bed, it put me into a mini-coma.
  • i’m still tired during the day, but i also haven’t been taking my iron daily and i have a massive sleep debt of like, 20 years. so i’m expecting to still be tired throughout the day for a while.
  • even though i’m still tired throughout the day i’m way more awake than usual.
  • side effects i’m experiencing: drowsiness (useful), slight dizziness and nausea, when i wake up in the morning it takes me longer to shake the sleep fog, and longer for my vision to come back to normal, and some extra bleeding and bruising (which i’m not actually 100% sure is from the gabapentin, as it could have other causes right now). all in all, nothing too severe and nothing i’m not willing to deal with in order to get a better night’s sleep. (regardless i’ll bring up the side effects with the doc when i see him next, which should be a week tomorrow.)

conclusion: it’s working, and so far i’m happy with it. will continue to monitor it for any severe or scary side effects, and am waiting to see how close to “normal” i’ll get with regards to feeling awake in the day, but for right now allowing myself to feel cautiously hopeful that this might be the answer to my sleep woes.

and now, i am a sleepykat so i am off to bed. yes, at 6am. don’t judge me.

~katje

ps: i think it also made my breasts bigger, which i consider a win. at least i do today; on a day when i don’t id as femme as i do today, it’ll probably cause some severe dysphoria. c’est la vie du genderqueer.

new meds

content warning: emetophobia

got my gabapentin today. trying it tonight.

also sleeping on the recliner tonight, because my neck won’t stop hurting. i don’t know what’s up with it. it hasn’t hurt this much since the last time i got whiplash. which was…on a bumper car i think. (yeah, bumper cars give whiplash. just in case you were out of things to worry about your kids doing.)

we had to go out when i was just waking up and before i had a chance to let my muscles adjust to actually being upright. that was less than fun. i’m doing better now, though, and we did pick up the package from the post office and our scrips — can i just publicly thank Asclepius for insurance? i don’t even know what it would have been without, but with our extended insurance from mr. katje’s workplace it was 17 bucks for three scrips. gone are the days of me taking my anti-depressant every other day to make it last! Io Asclepius! — and also got a little grocery shopping done as we were out of milk.

we’ve recently switched to 3.25% milk from 2% and i’m drinking a lot more of it. IT’S SO GOOD. however, we kind of regret going to IGA instead of Save-On today. milk was over 6 dollars for a 4L; at Save-On it’s around 4.5 bucks. that was a huge ouch. but i was too unwell to handle too grocery trips, so we just got it and sighed heavily.

i also asked at the pharmacy about switching from zoloft capsules to tabs because the capsules are incredibly hard for me to swallow and can cause me to throw up if i don’t do it exactly right. apparently the tabs are not available in Canada. because Canada has super draconian laws about medicine and food. (if you think the FDA is tough, haha have i got news for you.)

sometimes, i appreciate those laws. not today.

so continuing to use zoloft in capsule form until i can figure out a new med. maybe one that doesn’t make me sick and actually works better for my mental illnesses. hoping i get that appointment with a psychiatrist soon because i am running low on my meds.

but i’m excited about the gabapentin! i had a feeling i have Willis Ekbom Disease (aka ‘restless legs syndrome’ but the restless legs are a reaction to the uncontrollable spasms it causes) which i brought up with my doctor (short aside: i love my current doctor. he actually practices medicine instead of just telling me to lose weight. sent from the heavens. Io Asclepius again!) because i’m worried that it’s causing me to have a bad sleep. even after using the cpap for 6 months i am still exhausted all the time. much better with the cpap than without, but still. i shouldn’t be this tired.

so i asked if there was a test for willis ekbom and he said no, it’s one of those things where we give you treatment and see if it works and then that’s the test, basically. so i’m only supposed to take it before bed to see if it helps interrupt the processes that are causing me to spasm so i can actually get a full night’s rest instead of my body shaking itself ever so slightly awake all the time.

(i still spasm during the day and it’s uncomfortable, but if i can just get it to stop at night i can handle the daytime spasms. i’ve been dealing with them for a long time, after all.)

i’m really crossing my fingers the gabapentin works for me, because if i can fix my sleep i have a feeling i will feel 100x better, even with continued disability and chronic pain.

-katje

edited to add: between finishing writing this post but before publishing it i actually took a look at my pills. they’re capsules, because of course they are. i now have three prescription pills that are capsules. huzzah me. XD

Hope in the face of numbness

This post was originally published on my Medium profile on January 6, 2016.


My left pinky has become permanently numb.

I don’t know when this started. Every day I press it, hard, to the palm of my hand, in the hopes that that feeling, that pins and needles, that signal to my brain that something is wrong with the flesh — in the hopes that will disappear. It never does.

My pinky has become permanently numb.

Continue reading Hope in the face of numbness

Can we talk a bit about chronic illness?

Specifically, acid reflux. I want to talk about my reflux.

I’ve been holding back so much from my public life. I’ve stopped blogging here almost completely because I always feel that any post here has to fit my “brand” — whatever my brand is. I think the problem became me trying to fit myself into some mold I’m not; trying to always be camera-ready, even in my writing.

When I first started blogging I talked about everything that was going on in my life. I didn’t hold back. Over time I decided there were some things I’d prefer to keep private, but generally I still blogged about my life. And then I became a writer, and suddenly I needed a writing blog.

I’m tired of this. I’m tired of feeling like every post here has to relate somehow to writing or reading or literature or just “My life as a writer” as if that is separate in any way from the rest of my life. I’m tired of feeling like there needs to be a theme for my blog. There is a theme: me. There is a brand: a genderqueer, disabled, chronically and mentally ill writer who tries to pen books when zie’s not feeling like absolute crap, and who has fucking had it with the stigma around talking about one’s illnesses.

So today I want to talk about reflux. Warning: this post will contain some graphic description of the effects of acid reflux. Not recommended for emetophobes.

Continue reading Can we talk a bit about chronic illness?

Letting Go of Shame

I just read this great piece by Daniel José Older called Writing Begins With Forgiveness: Why One of the Most Common Pieces of Writing Advice Is Wrong. There’s a paragraph I really want to share with you, so I’m going to quote it here:

Here’s what stops more people from writing than anything else: shame. That creeping, nagging sense of ‘should be,’ ‘should have been,’ and ‘if only I had…’ Shame lives in the body, it clenches our muscles when we sit at the keyboard, takes up valuable mental space with useless, repetitive conversations. Shame, and the resulting paralysis, are what happen when the whole world drills into you that you should be writing every day and you’re not.

The whole article is great, though, and I urge you to take the time to read it.

But this thing, this shame…it hangs over my head every day I don’t write. Every day I don’t put in the time on my writing, or my author career — every day I don’t blog, I don’t edit, I don’t proof, I don’t put new words on paper — every day I focus on something else, I feel shame.

And I need to let go of that.

Right now I’m not writing as much as I’d like to. I’ve been putting in some work on a small project, but it’s slow going and like pulling teeth to be honest. I would like to have been finished with it in August but at this rate, I’ll be lucky to write “the end” in October. And as for the big project, Anala, book 3 in The Third Age, I’ve had to promise myself that on day 1 of my honeymoon I’ll sit down and do more work on it, but that I can’t try to get to before then.

I still have a bunch of stuff to do before then anyway — I just finished proofing The Jade Star of Athering, finally, and now I’ll be sending off the edited files so I can get the final paperback proof, and maybe there will be a paperback available by November. (Let’s not get hasty here; there have been so many issues with getting that book out.) I have that small project to get out, which I’ll talk more about when it’s launched, but suffice it to say it consists of 5 short pieces — a story, a myth, and 3 character backstories — that are proving difficult to get done.

These things I have to find room for in between the day job, the other publishing work I do, keeping house, wedding planning, and keeping my health up. To be honest I’m kinda crap at all of these things, except the day job, where the requirement is I show up, smile, and do the same thing for 8 hours. The fact is I just don’t have time to focus on writing all that much right now, and I have to let myself be okay with that.

It’s a struggle. I already shame myself for not being productive enough on whatever I’m doing; writing is no exception there. It’s supposed to be my greatest joy, but I also want it to be my career — to provide for me on some level. Is it any surprise I am too hard on myself for not doing enough of it?

I’ve been writing for most of my life and I’ve yet to really find my process. It’s changed and fluctuated so much over the years, I’m honestly not sure what really works for me. I’m sure I’ll figure it out someday — if I can let go, and trust myself, and actually have the time to do so.

So I’m letting go of the shame. I’m not letting myself feel crappy for not writing (aside from, you know, the crap feeling I get when I’m not writing just because I’m not writing — I’m not giving myself extra crap feeling, is what I’m saying). Shame does nothing productive; it drags us down; it makes us despair; it constricts whatever creativity we might have had. Shame is the mind-killer, for it is rooted in fear.

I’m going to start with self-forgiveness instead. Then, when I have the time to sit down and write, I can truly let what’s in my heart sing on the page.

~Katje

Praying for Wellness for Wolffy

You know what’s terrifying?

Hearing that your mom “might have cancer again” 6 months out from your wedding.

Putting it that way seems selfish, I guess, but I’m not trying to say that I care more about my wedding than I do my mom. I’m saying that having my wedding being so close puts things in starker perspective than the first time I heard my mom had cancer.

A young woman with short ash-blonde hair holds an infant with dark hair. The young woman's face is pointed away from the camera; she sits cross-legged and is dressed in a white dress covered in colorful embroidery.
Me and Mom.

The first time I heard my mom had cancer, my radar was clear of any major life events that I wanted her to be part of — so the bone-deep terror that struck me, paralyzed me, didn’t get a chance to really extend to “What if she won’t be at my wedding/see her grandkids?” beyond vague thoughts of such far-off, seemingly fantastical events. The only event that I thought she could possibly miss would be my graduation from University (though, honestly, if she’d died 5 years ago I doubt I would have graduated last year, or at all).

I remained worried, terrified, until she recovered from surgery. All her assurances of “They caught it early; it’s just a few polyps at this point. They’ll just snip them out and I’ll be fine,” did nothing to calm my fears. All I could hear was “Mom has cancer. I’m going to be alone.”

I have abandonment issues. They’re deep-seated; I’m aware of them; I don’t have the money to get therapy to try to work through them right now. I have coping skills to get through the common triggers.

There are no coping skills for hearing “Mom is really sick and we’re pretty sure it’s cancer again.”

And the thing is, it’s even scarier this time. *This* time, we’re not sure it’s cancer, not right now. *This* time, we are waiting for a firm diagnosis. *This* time, mom is _visibly sick_ in a way she wasn’t 5 years ago. 5 years ago you never would have guessed cancer was setting up shop in her colon. Now? I look at her and feel icy claws close around my throat because she’s definitely ill and _we don’t know why_.

Two women smile at the camera. One is older, with short ash-blonde hair and a toothy smile. The other is younger, with a closed mouth smile and red hair. She rests her chin on her mother's shoulder, and it's clear she's holding the camera for both of them.
A more recent picture.

All we know right now is what’s working and what’s not. Mom’s taking a bunch of her supplements to deal with the weakness, which is caused by iron anemia (supposedly probably related to cancer “somewhere in the gut”), and the pain. She’s sleeping a hell of a lot more than she used to, and down in the library, on the guest bed that has a remote to lift her partially upright in the morning. She’s unable to work. She’s lost so much weight she doesn’t really look like herself anymore — not like the woman I’ve known my whole life, who raised me.

I look at her and my heart skips beats, my breathing becomes short, and the terror descends. I have been paralyzed with this terror for almost two months now, feeling helpless and out of control.

The truth is, we have no idea what the next few months hold. I’m trying desperately to keep it all together, to keep our lives going as normal as possible, but it’s the most difficult thing I can think of right now. All my spare energy is twisted up with praying that she’s okay; that it’s not as serious as they think; that in a few months she’ll be back to her old self. But I don’t let myself cling to those ideas, because that sort of hope can be deadly.

Mom’s sick, so my life is on hold. She doesn’t want it to be, of course; she doesn’t want things disrupted for me. But the very fact of her illness means things are emotionally disrupted for me — and these things are fucking dominoes. Everything else comes tumbling down.

My mom is sick and all I can think about is my wedding, wondering if she’ll be there to down the aisle with me, to give a toast at the reception, to have fun with family and friends, to witness me making one of the best decisions of my life.

All I can think about is my wedding, and all I can feel is fear.


We’ve set up a fundraiser to help support Mom during this time. If you’re able to give anything to it, it’s greatly appreciated. If you can’t give monetarily, we totally understand, and just ask that you pass it on. Alternatively you can give my mom’s blog a read as she chronicles what’s going on in her life.

I should probably post something here

Just so you all know I’m not dead.

I know, I haven’t posted in over a month, and now I am posting it’s just a boring general update on my life, not something fascinating about the backstory of Athering.

I apologize.

I’ve been fighting off illness, physical and mental, for most of February and March, and been finding it really hard to keep my focus. Even now I’m getting distracted, looking away, letting my attention wander, obsessively checking Kitten Clicker to see if there’s a new astronomical event I can observe and make a star chart from (there isn’t).

Yesterday I decided that cleaning up and reorganizing my office/the guest bedroom would help me focus better, because the mess has been distracting. It’s true the mess has been distracting, and I do feel better now that I’ve taken the first step to cleaning. Of course, there are still a million steps, and I’m sitting here trying to convince myself to do some actual work before tackling the mess again. It’s going to take me several days to finish it, so there’s no need for it to be the first thing I work at every day.

All this is to say: I have no idea what to write about here. Or, I have ideas, I just haven’t had the focus to sit down and get them done.

I don’t know where my focus went. I wish it were something simple, like I’ve been off my meds and just need to start taking them again, but that’s not it. I’ve been taking my meds faithfully for a while now. I just…can’t concentrate. It might be a symptom of absolute overwhelm. Whenever there’s too much on my plate (as there is now) my brain just sort of…shuts down. It won’t focus on what needs to be done, what’s priority; it’ll just grab onto random passing thoughts and run with them. Which is why I find myself doing low-priority things first, because they’re easier, and I can convince myself I’m being truly productive because hey, that thing I’m doing is on the list. Somewhere near the murky bottom, but still on the list.

So I think what I’m getting at with this post is that I need to reduce my stated posting schedule here until my current state of overwhelm is relieved a bit. Posting once a week would be awesome, but it’s apparent I just can’t manage it at the moment, and every week I miss I feel guiltier and guiltier until I’m stuck in a shame-spiral that won’t end. Well, time to end the shame-spiral because it’s not doing anyone any good. I’m going to post here once a month, on a topic related to the worlds I write in — character snapshots, backstory, maybe unpublished myths, who knows. Stuff like that.

Reducing my posting commitment here, for now, will lower my stress levels and allow me to finish other projects — like proofing the paperback copy of The Jade Star of Athering, which really should have been done this week, and would have, probably, had there not been a TON of errors for me to correct (because I apparently misplaced my brain when I did the layout). New goal: end of the month.

Other projects I should be focusing on? Writing the third book in The Third Age, Anala, as I have a self-imposed deadline of April 12 to finish the first draft. Going to have to pull out the big guns to make that happen: coffee IVs and huge sacrifices to the Mousai. (Only half-kidding.)

Then there’s this month’s episode of Fifty Shades of Drinking; finishing the cleaning of the office; finishing last year’s taxes; re-organizing my pantry and cleaning my kitchen; doing my filing (a Sisyphean task); and oh, did I mention, wedding planning? Yeah. Getting (officially) married in 7 months and am super behind on that. Go me.

Adulting is super difficult and the benefits don’t always outweigh the costs. If you’re a kid reading this, take my advice: don’t grow up. Run away to Never Never Land and just stay a kid forever. MUCH BETTER CHOICE.

Anyway. I’m off to work some more on The Jade Star of Athering, and if I don’t post again this month (with something actually about Athering or something) then I will see you in April.

-Katje