#ive been like actively failing to fix my sleep schedule again for like a month now

[nyancrimew]

Are birds going chiirp chiiirp chiiirp chiirp and tweet tweet tweet a good time to sleep?

based on when ive been managing to sleep the last like two months id probably say yes

[lenin-it-to-win-it]

just gonna rant about my health issues to no one in particular for a bit under the cut sooo

im just so fucking tired of being sick all the time like. its been almost 2 years now of actively Going To Doctors And Having Tests Done And Trying To Get A Diagnosis and fucking!!! nothing works!!! and i only have until the end of this coming school year to get it figured out before my insurance runs out otherwise im just fucked!!! because im sure as hell not gonna be able to afford a fucking mri every six months making 10 bucks an hour at some retail shithole but so far ive seen SIX different fucking doctors (not counting 2 ER visits) because they all just keep shuffling me back and forth like “idk maybe have someone else deal with this? weird lol” or like “have you considered that maybe you might have anxiety :) you seem stressed :)” 

like yeah its a fucking stressful situation getting progressively fucking sicker for two goddamn years wasting thousands of dollars and reaching the end of a fucking ticking clock because almost every doctor ive seen is an incompetent jackass who does NOTHING but waste my time and money and then fucking condescend to me about anxiety like!!! yeah i probably DO have anxiety and depression and autism and what the fuck ever else but this isnt THAT 

and the literal ONE TIME i had ANY treatment that worked AT ALL helping with my eye spasms (literally One of Many Symptoms that i deal with on a fucking daily basis that still manages to completely fuck up my life) is something i cant take anymore because it damaged my fucking eyes!!! possibly permanently!!! i already HAD issues wtih light sensitivity that this medicine made WAYYY fucking worse and guess whats one of the WORST things at setting off my eye spasms??? anything to do with fucking light so YEAH thANKS for that @ the opthalmologist who had me take those damn eye drops for two months straight, which other neuro opthalmologist said was bullshit when i saw her again, not that im letting HER off the hook either since she REFERRED me to that incompetent bitch in the first place and then had NO solution other than “hm well you definitely shouldnt take that medicine again, but theres literally No Other Treatment, maybe blow another $400 in a few months to come see me again so i can continue to Not Help You In Any Way”

and its getting wORSE ALL THE TIME!!! and the best thing doctors can think of is “hm well maybe wait a bit to see if it gets worse? and maybe then we’ll know what it is?” well its getting worse!!!! but they still dont seem to know what it is!!! like at first it was just my vision going out of focus for a few seconds at a time, then it was a few minutes, then i was having visual distortion (or maybe hallucinations? who knows! certainly not any of the fucking doctors ive seen!), then awful fucking eye strain headaches, then spasms in my neck, then my jaw, then my arms, then my legs, now all fucking over, and now i get sick and dizzy just by moving my HEAD too far or too suddenly and like at work earlier today i was just stumbling around for two hours bc there was too much pressure in my head and everything felt tilted and i was just grabbing at every surface trying not to fall with my head like on my shoulder bc keeping my neck straight was too fucking hard and i swear to fuckign god a couple nights ago there was this weird buzzing on the side of my face??? and like it felt like my mouth was moving slower than it should??? but i dont even KNOW if thats a Real SymptomTM or if i was just freaked out and tired and imagining things or if i really am just getting to be a paranoid delusional nutcase about my health because every little thing terrifies me at this point, like ive been coughing for a couple weeks and instead of being like “oh its a bad cold” im like “maybe now my immune systems fucked up too maybe this is A New Symptom” i literally cant tell anymore i have no fucking idea 

and i dont WANT to think about all this All The Fucking Time but i do!!!!! i literally HAVE to bc it affects my life in every fucking possible way and i cant escape it like even rn the light from the fuckign computer is hurting my eyes and i cant even see what im typing half the time bc my eyes keep going out of focus and my teeth keep chattering and my head hurts or ill go to get a drink of water but then just Stand there for a few minutes bc i dont trust myself to hold a cup full of water and not spill it bc im having spasms or ill have to wear sunglasses at the dinner table bc my fucking idiot asshole dad got the BRIGHTEST possible lightbulbs for the dining room and i physically cant stand them 

or like im already dreading having to explain all this shit to my professors this semester about how like “oh so i probably wont be able to keep up with daily readings, especialyl not if theyre on physical paper and i cant scale up the text because my eyes just spontaneously stop working and i cant read..... and ill need a computer to take notes, i can Usually hold a pencil but one time i had a spasm in class and flung it across the room and it was super embarrassing and i ltierally skipped that class for weeks because of it so id really rather not deal with that again.... and even though im a fuckign AMAZING public speaker like, state champion debate level public speaking, ill still probably get super fucking nervous and suck at any kind of in class presentation bc ill just be thinking about my spasms the whole time and wont be able to focus....... and ill have to wear sunglasses all the time too so hopefully thats not an issue........ and also ill probably miss a lot of class bc whether or not i can handle walking half a mile Varies Wildly from day to day and also i have a lot of doctors appointments and sometimes im on medicine that completely ruins my sleep schedule so you know... looking forward to a great semester, hope i dont completely fail your class” 

and i have fuckign work tomorrow where ill have to deal with trying to pretend like even the most minor tasks arent painful and difficult and deal with awful btichy entitled customers complaining that im not SMILEY enough for you like the motherfucker who asked me how i was and i said fine and he was like “jUuUUuuuST fINE” like shut the everlasting FUCK UP with that ive met my obligation leave me ALONE my day isnt FINE im in awful pain and i HATE you and everyone like you or ill have to deal with my coworkers giving me weird looks while im having spasms or outright MOCKING me for them like the asshole that called me TWITCH (and a whore, but thats Another Fucking Story) or just not knowing how to deal and making bad taste jokes like when my teeth are chattering bc I Physically Cant Make It Stop like “haha are you chewing an invisible piece of gum lol” like no bitch im a neurological nightmare and my brain doesnt work and im Barely Holding Together would you PLEASE shut the fuck up 

and most of the time i just feel like everyone thinks im a fucking freak like even just sitting in the waiting room to see the neurologist or opthalmologist or whatever and everyone else there is Old and im the only person even remotely close to my age there and even the doctors dont seem to take me that seriously bc of it like “oh shes young, cant be that bad, all these old people out here are gonna die like tomorrow so why worry about this girl, its probably just anxiety from being on her period or having a test to study for lol” like straight up when the movement disorder neurologist was examining me she was like “im not used to seeing anyone this young or healthy’ and i know she meant it relatively speaking but like!!! clearly im NOT healthy or i wouldnt BE here like obviously something is wrong with me and its ruining my life and its serious and id like it fixed thanks!!!!! 

and i feel like No One Gets It like, obviously there are people wayyyy sicker than i am who suffer a lot more or people in similar situations but like. i dont Personally Know someone like that i can just talk to and like, of course i have friends who can Listen but.................................. theres a difference from being able to listen and being able to actually Understand and sometimes you just cant Get It unless youve gone through it like i really dont think ANYONE in my life has any idea how serious this is or how much it affects me and i know i cant expect everyone to just Always Think Of My IssuesTM but little things!!! like maybe NOT having the brighest possible lightbulbs in the dining room!!!! my brother NOT having his birthday party at dave and busters, which i had TONS of spasms at last time i went (and im even worse now!) AND the staff gave me shit about wearing sunglasses so now im nervous about That too or just! idk! people respecting and listening to me when i tell them that i Cant Do Something or that Doing That Thing Hurts and not just brushing me off or telling me im overreacting and then getting all shocked pikachu face when their dumbassery actually physically HURTS me and i get pissed with them for it!!!!

i dont think anyone gets how much it scares me all the time or how its Always on my mind and i literally cant think about anything else like. this could be the rest of my life. this could end my life. i dont know what i have. i might get diagnosed in the next month and have it completely cured, i might get a diagnosis and still be sick forever, i might not find out until its too late and i have LITERALLY NO FUCKING IDEA WHICH ONE!!!! ITS GREAT!!!!!!!! WELCOME TO MY LIFE!!!!!!!!!!!!

[braindamageforbeginners]

Intermezzo: Free Solo Review

Pre-Cycle 11

So, first of all, for anyone wondering, I did get the go ahead from the warlocks on Tuesday to continue with treatment through Cycle 12 (assuming my blood tests come back okay), which is great news. And I’d normally write about that and how awesome it is (Hooray! More chemo!), but it’s been such a long, weird, event-filled week even by my standards (my car got hit by lightning)(that’s a dramatic exaggeration, but, like everything else in my life, far less of one than I’d like), that instead, I thought I’d review the fantastic (and - for me - utterly terrifying) film “Free Solo.” Also, that’ll enable me to put off trying to figure out my upcoming chemo schedule, which is somewhat less-predictable than others (I’d have to come in on Christmas Eve or Christmas according to my current estimate, which seems a little ghoulish even for me).

A bit of background. Even though I like rock climbers and have many friends and family in that group, and even though I have nothing but love for them, their utterly terrifying sport isn’t for me (and thanks to them for putting up with me long enough for me to figure that one out). Full confession; I’m not only psychologically unfit for it, I’m physically not a good candidate. Even putting my neurological issues aside (unreliable left leg, vertigo)(those are the lasting impacts of neurosurgery #3 and #2, respectively), I’m terrified of heights. And with good reason - I’m about 182 cm tall and 100 kg; if I fall, it’s a much bigger problem than if someone smaller/closer to the ground and lighter does. And I’m about 85% torso, by height. So, why would I see a film about a sport that frightens me? Simply put, Alex Honnold, who is possibly the world’s premier greatest living rock climber.

Many, many, many years ago, someone pointed out to me that everyone’s heard of LeBron James, or Colin Kaepernick; fewer people have heard of Royal Robbins (or Kelly Slater, for that matter), largely because the latter two exist in a weird sub-culture of extreme sports that’s not as profitable or plugged in to pop culture as main-stream sports (I’ve only heard of Honnold because I’m a big fan of the Banff Film Festival). So, one of the world’s most niche-sports-figure getting a film - even if it’s not in wide release - is really cool. Again, it means society, as a whole, is opening up to non-traditional people, and sports, and stories. Which, as a now non-traditional person (again, traditionally, people like me die within two years of diagnosis, and that annoying new gimp/cripple physical aspect makes life a lot less accessible than I’d prefer), is cool, and, more importantly, as a storyteller, it means more, different, and better stories.

The story of “Free Solo” is pretty straight-forward. A man works his whole life to perfect his craft, and then, at the height of his talent, decides to gamble it on a potentially lethal career high-point. Wait, what? Most rock climbers - and certainly my sub-par, failed attempts - use various safety equipment and climb with buddies and do other things to minimize risk. The downside is both minimized risk, and, from my limited understanding, some of these safety devices permanently “hurt” (or pierce, anyway) the rock. “Free solo” climbing eschews such devices, or, indeed, a sense of self-preservation. Says the guy who’s letting science use him as a lab rat for a poisonous substance. Again, when you’re desperate, you make odd choices. However, like me, A. Honnold points out that most free-solo rock climbs are calculated risks (to paraphrase him, “The odds of me actually falling are low, but if that happens, the odds of something really, really bad happening are high.”). Which brings us to El Capitain, the Everest of the climbing world. As I may have mentioned previously, this is the Holy Grail of climbing. If you ever go to Yosemite Valley in Yosemite National Park (and I recommend you do this before you die), you will not be able to miss El Cap. If you’re like me, you might even have to go lie down for a few minutes just looking at up at it (it’s terrifying even from ground level). Even though it’s been climbed by blind, deaf, and physically disabled people (it’s a long story; there’s an old Yosemite joke that El Cap is handicap-accessible), it has never been climbed (clumb? someone help me with these conjugations) without safety devices. Enter Mr. Honnold, stage right, and the codependent National Geographic film crew. To make a long story short, he climbs the mountain and survives, with the support of both the film-makers and his long-suffering girlfriend. Hooray.

The reason this film is worth seeing - and why I’m reviewing it - is that, for all that, it’s a very weird film (it’s a really good film, but it’s weird). First of all, the camera and framing devices need a little description. In every scene or shot of El Cap, it not only dominates everything around it, but they use some cool VFX devices at various points to show Yosemite valley shifting and swinging around El Cap. Which made me grip my seat rests, but also gave an interesting insight into how Yosemite is absolutely dominated by these staggeringly massive walls on all sides. Secondly, this is - as far as I know - the only character study of A. Honnold on file in video form. Even though he’s been prominently featured in the Banff Film Festival and other places, they don’t give a real sense of who he is - he’s just a sort of stand-in rock climber fantasy figure; a James Bond of the rock climbing world - in all the other films I’ve seen, he goes somewhere and climbs something impressive; there’s not a whole lot revealed except he likes to climb. And he’s pretty much fearless - according to a little background research (yes, I do read about my subjects before tackling them), Honnold isn’t known for being the most technically-proficient or skilled climber, but he is known for taking on risks and challenges that no one else in the climbing world does.  Qui audet adipiscitur and all that. This film delves a little more into that, actually following him into an fMRI (one of those specialized MRIs that shows which parts of the brain “light up” during various tasks and images. The science-person in me would point out that this test is so overly sensitive, it should be taken with a grain of salt (my favorite research poster of all time was one that used fMRI analysis to show which images a dead salmon prefers)(you read that correctly). However, in this case, it showed that Honnold’s fear threshold/tolerance was much, much higher than usual. The film also looks at what that looks like in a relationship, as they also follow Honnold’s girlfriend, Sanni McCandless, for some of it. In retrospect, she’s probably the real hero of the film, because she fully supports him in his near-suicidal ambitions. There’s also the weird aspect about how the world’s most recklessly brave climber gets... stage fright. The film actually documents this very well, about how Honnold doesn’t seem up to the task when everyone’s around, watching him; and it takes a series of hidden cameras and a tactical retreat by McCandless to force him up the wall. As someone who has, ah, “performance issues” when it comes to urine samples (I’d imagine that after a year of those, it wouldn’t be a big issue, like the IVs and neuralgia bother me less, but we all have our idiosyncrasies - I intend to ask the chemo ward to quietly move to a different floor next time), I weirdly get it. And I also sort of weirdly get how, in an extreme situation, sometimes the riskier, more outrageous path is also the safer one. Having said that, I still have to give the man props for a following through on a near-psychotic ambition and seeing it through.

ANYWAY… WEIGHT: 96 kilos CONCENTRATION: Not bad, but I’m also exhausted from a week of travel and holidays. Which reminds me, if I make it out of this alive, I intend to start hibernating from Nov.15-Dec, 25, which should make this sort of holiday seasonal travel a little easier. APPETITE: Good. I’m even starting to appreciate “fun” things, like non-vegetable or protein-based foodstuffs. I imagine that’ll definitely decrease as I get back into the grind and find my willpower renewed with... well, the same willpower that allows me to swallow pills that come in “biohazard” bags. ACTIVITY LEVEL: Good, but I’m still exhausted. SLEEP QUALITY: Okay. COORDINATION/DEXTERITY: Excellent; I even went to the gym yesterday without braces. MEMORY: Not bad, I still have trouble forgetting to complete long or multi-step tasks, but that’s hardly new.. PHYSICAL: Overall, not too bad. At the moment, I’m mostly tired, sore, a little cold, and hungry, which - if you haven’t had peripheral nerve damage or chemo-induced panic-attacks, might seem bad, but to have normal, every day physical complaints instead of my usual, hyper-bizarre ones... well, it’s deeply comforting, in an odd, slightly-masochistic way. EMOTIONAL: Good. I realize I just got a clean scan on Monday - I had to wait until Tuesday to review the findings, though - and after 24 hours of that sort of frenzied anxiety, the volume on standard emotional issues gets muted. SIDE EFFECTS: Tired. So tired. Which reminds me, based on my records, I’m pretty sure my limp’s tied into exhaustion/fatigue issues. Which gives me hope that, after the next two cycles (and possibly a six-month nap to catch up on my sleep) I might get something like consistent progress fixing that complaint.  CURRENTLY READING (For Donna): “A Monster Calls.”