where did i leave off? (i was waiting for all of this to seem funny so i could write about it, but eh, let's give it a shot.)
ah yes, we were staying at a friend's place momentarily. my opinion at the time was that she was saintly, seeing as i was not sleeping in my car in August, entirely due to her goodwill. yeah. about that goodwill. not very long-lived, as it happens.
i will REALLY never understand people who try to "steal" someone else's partner, particularly when said partner is polyamorous. and that's not just shade (not gonna lie, some of it's shade - she deserves all the shade, as you will shortly see), it's a genuine statement: i will never understand it. as she got possessive (towards Matt) and grumpy/snappy towards me, i just left. i was dealing with suicidal depression at the time, and i Did. Not. Have. Time. For. Her. Shit. i went back to my friend's place, because there i didn't have to pretend to not be rolling my eyes at girl's weird - and you know, knowing i was actually welcome at my friend's, etcetera.
her weird was progressive. Matt was not feeling good about any of her nonsense either, so he went to stay with a coworker of his for a while. then she got even stranger, began telling her coworkers and friends he was her boyfriend... all while Matt was backing off like a roadrunner at that point, because the situation was Not Okay.
she then proceeded to stalk him all across social media, and with multiple telephone numbers, started flagging down his coworkers when she saw them out & about... just a few months ago, she showed up at Matt's place of employment and started yelling at people. thankfully he wasn't there. and also that she hasn't found out how close we live to his place of employment.
(brief aside - girl lives wayyyyy down in south Austin & does not own a vehicle. how she even managed to get up here to commence stalkery is beyond me. she must have spent 5 hours on a bus that day.)
shit was crazy for a while. i didn't want to exacerbate the situation by confronting her, particularly if she was the "level up" type, because i didn't want to make it any worse for Matt, who was already stressed the fuck out.
but we finally found a shithole apartment for way too much fucking money at the tail end of November 2014, and were officially Not Homeless Anymore, mostly through the grace of my mother helping us to pay rent at first. the situation was looking up, relatively speaking, though i wouldn't have said that at the time (see: depression). at least, the living situation fuckery had been dealt with, if none of our other issues.
and then, i really fucked my back up.
i may need to include some quick backstory, here. i was an active kid - gymnastics, ballet, marching band, etcetera. so i was always tweaking something here or there. i figured it was normal. injuries do happen in competitive sports. none of the injuries were ever that bad, except for when they were (that one time i danced EN POINTE on a foot with both a broken toe & tendon injuries, although i didn't know about the broken toe at the time. i only found out about the toe much later, after it had healed, via x-ray).
i thought i was normal (physically speaking, anyway). my neck & back had started hurting me when i was fifteen. nobody ever took me seriously when i said it, because i was young and nobody expects a teenager to actually be hurting, hurting. plus, i'd had severe whiplash as a kid from an accident, and we knew my neck was screwy. but i was in pain every day.
i did go see a chiropractor, which helped some. i talked to my GP about back pain, and also the hand tremor i'd developed at 16 or 17 - but although he remarked on all of my symptoms correctly at the time, he didn't put them together (as a family GP for a small town, frankly i wouldn't have expected him to. he still got closer than anyone else).
now back to December 2014, where i injured my back more severely than i ever had before. this wasn't like a minor twinge issue. this was one of those stabbing nerve pain when i sit or stand or breathe or pee or really do anything but lie perfectly still. i was in bed for two weeks, and couch bound for probably a month after that. and although my chronic pain was definitely daily and chronic and had been worsening throughout the fifteen-plus fucking years i've been in pain, this back injury ratcheted it up to a whole new level.
so you get a general idea of what i'm actually talking about, here is a pain chart. previous to this back injury, i had probably spent most of my days in the 3 - 5 range.
now i was living mostly in the 6 - 8 range.
i don't think i had talked about pain much before this last year, on social media or otherwise. some of my joints and my neck/back really bothered me - but i had done enough physical stuff and had enough legitimate back/neck injuries that i thought there were concrete reasons for all of these old pains. and again - i thought this was normal. i didn't have a way to gauge my pain as compared to other people who talk about their back hurting. it can be difficult to gauge something so subjective. and again, i wasn't taken seriously by a lot of people - because i'm young, this sort of thing isn't normal.
but i don't think i was being honest with myself about how my functionality was degrading. i was having worsening problems with hand pain, and function. my tremor was just getting worse. and i was having increasing issues with other joints which hadn't previously been an issue - my right knee, even my ankles and feet. i found myself more and more short-tempered, which i later realized was largely due to pain. i was also experiencing the kind of chronic fatigue that left me exhausted even after sleeping 12 hour nights all the time.
when i injured myself, i fell into a perfect storm of bullshit. my back never did fully recuperate from the most recent injury; even now it's still not at its pre-recent-injury level of my "normal." at the same time i was living in allergy hell (not properly medicated + allergic to shithole apartment = Not Good.), and experiencing headsplitting tension headaches or migraines on a daily basis. i went for about a month having a horrible splitting headache of some variety ever single day. and that was on top of the heightened overall body pain.
i basically became a rage monster. i'll own up to it, i am not a fun person to be around when i'm in this much pain. particularly when i was experiencing daily migraines while coughing my lungs out, with a nasty back injury. i straight up wanted to die at that point, and i'm not being hyperbolic. thankfully i didn't have the energy to pursue it. (yes, i am on psych meds and doing a lot better, so don't worry on that front.) and i felt horribly guilty about not being able to work - or contribute to much of anything, for that matter.
i started researching. because there was no way in fucking hell this situation was normal. i was 29, 30, and this level of debilitating pain is not fucking normal. i'd already been researching BEFORE injuring my back - before even moving out of that rental house - but i really leapt into it then. i didn't have anything left to lose and i needed answers. i'd already failed to get a minimum wage job that i was both recommended for by an employee of theirs, AND hideously overqualified for, due to me being honest about my physical condition. (a mistake i won't be making again - disclosing disability is definitely a bad idea, don't do it.) talk about an ego blow. i cried.
i lucked into finding a great group of people on twitter, many of whom were experiencing similar (or exactly the same) symptoms - and many of them already had diagnoses! i researched more. it was like looking into a mirror. with the necessary IANAD (i am not a doctor) caveat out of the way, still, i will eat every hat i own if i'm not right. i *like* medical science so i tend to do things like read scholarly articles about things, particularly things i think might be affecting me. (my life's not all bad news - somewhat relatedly, i'm currently getting paid to write about medical science/research, so for the first time i have regular freelance work - woot!!)
i have Ehlers-Danlos Syndrome. and trying to figure out how to live with my changing body has eaten up my past year, for the most part. (if you'd like more information about EDS you can get a brief overview here, or for scads of info, i recommend Oh Twist as a great one-stop resource.)
a lot of things have changed for me, in the past year. i got tired of being the "strong silent type" about it and i started talking about my daily reality some, particularly on twitter. i now own a cane, to help mitigate the chronic fatigue - doing routine stuff like going to the grocery store can cause a pain or fatigue spike, and the cane helps me hurt less. but fuck, i'm 31 and i own a cane. i've effectively become disabled by pain and fatigue. it's the most frustrating thing i've ever had to deal with.
in fact, once we sell the house here, we're going to be moving back to Portland - i love it there, but the main reason for the move is that Oregon has a well-established medical marijuana program. i absolutely have to get my chronic pain under control, if i want to have decent quality of life. it's exhausting to be in pain all the time. i'd like to avoid the opiate/opioid route if i can, because entirely separate from some of the drawbacks of the drug itself, i've personally seen my friends who are prescribed them to manage chronic pain get dicked around and treated like addicts by a shocking number of medical professionals.
i haven't really wanted to talk about this much, since i'm not technically diagnosed yet. but since the most effective method of diagnosing EDS is usually through a geneticist, for fuck's sake, and i have no insurance... well. i guess it will have to wait a while. but i wanted to put an update up, since i basically left you hanging a year ago... if anyone still reads this, anyway. i want to be updating the blog more regularly - particularly with funny shit! but y'all, i'm overwhelmed as hell. and all this is why.
well, this post was depressing as hell. but if you're looking to get your hands on some fresh humor writing, don't forget that i have a Patreon (it's so cheap to support, for real, it's a dollar a story!), and if you become a supporter you'll get material that this blog won't see... tempt, tempt.
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