i just realized i didn't nap yesterday! for the first time in ages! i don't think i even had the URGE to nap!!!! hot shit.
ANOTHER NAPLESS DAY AND FEELIN' FINE!!!!! fuck yes maybe the "i will literally die if i don't get more sleep" feeling is gonna stay gone for a while im so excited
killin' it on the "not being a complete mess bc my roomie is moving" front rn, v proud of myself. v calm. feel much more secure in the potential of finding someone to replace her front, gonna hang onto that feeling. writing a bit more too, have the next chapter plotted out and ready to be written. wanna draw more... but its late... mmmm i should behave and take my sleepy pill and see if i can break my 3 night run of terrible shit sleep probably will, i always sleep a bit better when im not home alone, makes the hyperalertness die down a bit the napless days are past but i think thats mostly from three days of terrible fucking sleep being had, bc i was taking a nap + still conking out sitting up later the last few days, which sucks napless days was also hypomania oops, but. hey. it happens.
excavated most of one side of my bed. found where kricket had made a mess, which seems luckily to have all been on top of an old bag which im comfortable with throwing away entirely. so thats out now at long last. sorted some recycling. gonna go for round 2 in a bit. tired from hanging upside down but glad im finally fucking doing it, im one step closer to getting my bedframe swapped out. also was kinda hypomanic last night but managed to conk out at 3am. ....til fucking noon. then again for another two hours after i was awake for a bit. i think im all caught up now on sleep thankfully, after that sleep deficit from hell of multiple days of bad sleep.
ive lost the entire day to sleep. orz kricket woke me up hella earlier than i intended to get up so i passed out again after getting her water. till like noon. then at 2:30 i got tired again and laid down. ....till 6.
therapist said he was very pleased with how im doing right now, which is nice to get reassurance im not just imagining how im feeling right now. i WAS a miserable upset wretch struggling to want to stay alive, VERY recently, but since the semester ended and the meds got swapped up a bit, I'm doing much much better. I'm making plans. I'm gonna get a walker next month and use it each day to walk around the block or a few blocks as i get stronger, sitting as needed bc its a seat walker, and keep doing that along w/ recumbent bike indoors during the heat of the day with the AC keeping me alive. plan is to be strong enough by August to handle walkies w/ the walker through Matsuricon with friends. I miss conventions and with my roomie moving I'm not gonna have help with the wheelchair, and im not strong enough to do that alone. if i can avoid shelling out for an expensive electric wheelchair as long as possible, i will do it. i want mobility. i want that power. longer term goals: be able to go to classes in august without the walker, bc its only one class and its right by the bus stop. be strong enough w/ or without walker to do my field placement when its time. be strong enough to go to other conventions and see friends more often w/ walker to avoid dizzies in lines. get into a masters program and do that classwork/field placement while getting even stronger get job i can do once i graduate save money get own apartment somewhere, procure vehicle go to japan, either with walker or without if im strong enough and feeling spicy, enjoy my bucket list location and hopefully be up for future visits bc i wanna explore ALL of the fucking places and cannot do that in one trip. they're probably funny goals, and they might not go as i hope, but its nice to have like... some kind of sense of 'maybe if im lucky and hope really hard' instead of it all feeling futile to even dream.
started getting Anxious for unknown reasons earlier. tense, couldn't focus, couldn't watch or read anything comfortably. jittery. some of it's probably related to the rough sleep i had last night but the rest might just be Evening Pattern I'm still fighting off. most likely the tired tho. wound up falling into drawing. finished the art refs for my new commission sheet im putting together (since roomie is leaving soon i need to buy some things for the house to use once she's gone, cookware and some towels and stuff for example on top of needing to restock kitty litter and getting my walker) and then all but blacked out and spent 3-4 straight hours inking a drawing with a complete background because apparently i'm insane.
got really upset about my weight... and after a brief sulk i decided to do something about it. start the physical therapy so im more prepared when the walker gets here. did 6 minutes on the recumbent bike before i had to stop. then did a lot of arm reps in different positions. arms are noodles now. im soggy from sweating from the bike. baby steps, but steps.
Ehlers Danlos dx officially Get. gonna get checked for sjogrens as well Just In Case but they're p sure its not that or anything autoimmune. She just straight up took my history, looked at me and said "yeah you're 9/9 on the beighton score so there's that to take into consideration" so ive gotta remember its that and not just general hypermobility. also gonna see a gi doc about my liver bc i wasn't seeing anyone. also also they stuck me twice and couldnt get Any fucking blood out of me :') i must be so dehydrated.. so imma just. try again on the 21st at my other appointment. lol. pregame with tons of liquids. also apparently osteoarthritis dx get???? there's subchondral cysts in my sacrum
got an appointment with a gastro on Wednesday by surprise. There was a sudden opening so I went ahead and took it when the scheduler called. It's a nurse practitioner, I've never seen a gastro before so idk what to expect really. But I guess we'll see? I should probably mention the intermittent bloody diarrhea while I'm there for the liver stuff, go ahead and cross all my t's and dot all my i's.
pro: got my blood taken perfectly, no issues, not even any pain from being stuck, no dizziness or faintness, no pain from the band. amazing. 10/10 5 stars would get stuck by him again. con: not all the blood i needed done got taken. oops. they didn't get the stuff from the rheumatologist before. pro: my liver might not be AS damaged as the initial scan said, because I'm fat it can give some false amount readings! and even if it IS as damaged as the initial scan said, I'm not in any major danger currently. con: i am not losing weight fast enough and need to find some way that my pcos + other bullshit will respond to decently bc it Needs To Come Off for medical reasons and i SINCERELY do not want to ever get a gastric surgery. oh also con/pro/unsure: she recommended asking my GP about getting a colonoscopy after all
blood results looking good, I think they're mostly done now. had a brief "?!?!?!?!?!?!" when i saw Hep A was positive before i remembered I've had a vaccine for it so that's why it's registering that.
my liver enzymes wound up being higher than February which is :///// but unsurprising because I've not been sticking to my diet in a long time. Because I suck and have no self control. BUT on the up side of this new not having access to someone with a car thing, instacart will force me to be VERY conscious of my choices, way less room for spontaneous purchases and impulse buys. I don't get to see the limited time sections but. Eh. I'll live. Can survive. I know the general items in the store well enough by now that I can at least prep around that. Plenty of options. I go in for another ultrasound/elastoscan or whatever it's called on Tuesday morning. Not sure what to think. It won't be anything amazing, testwise, I don't imagine it's any different than the fibroscan I had last year. But knowing this one will apparently be a bit more accurate in checking how fibrous it is makes me nervous. I've been fucking around: how bad has it gotten? Has it gotten better at all? Or worse? My enzymes are better than they were last year when I got scanned first, so. Hopefully good change? idk. Nervous. I also have therapy that day, a few hours later, so bluh. tried to call my dentist to schedule my cleaning for july since they're swamped this month and was told to call back tuesday because they'll be back in office then, bc I said North High Street for the one I was calling about. ...Only to remember afterwards that there are Two offices at separate locations on North High. I didn't clarify that I meant the one by the grocery store. ah well, tuesday wait won't kill me. So I'll get my scan in, come home, rest a bit and see my results, do therapy, and then call and schedule. I've already made a phone reminder about it so I won't forget again, because goddamn have I forgotten consistently till now. I also still need to get my learners permit but at this point like... It's not as big of a rush. I just need my state ID at bare minimum, though, so I have that. not having ID sucks.
SO! Doctor appointment today. My doctor is very attentive and VERY sweet, I adore her ass so much. she LISTENS. she has a real desire to help people, esp folks who've been fucked over by the system already. She was thrilled to hear the EDS diagnosis bc it made sense and also explained, most likely, the random Insane Pelvic Spasms I get sometimes. we'll do a pelvic exam later just to be sure there's nothing else, though. She also suggested and referred me for a colonoscopy bc I still get intermittent blood in the stool and she's concerned. So uh. That's gonna be a whole thing. They'll probably find nothing, honestly, but I guess I'd rather get a clear bill of health and an all clear on any potential polyps they see than there be something lurking in there. Logistics of finding someone to accompany me for the procedure will be an entire Thing, but that'll be dealt with later I guess. Roomie is back in town till Sunday morning to get more things before leaving again. She's taking her cat this time, too. I have NO idea how much of this hellhole she intends to clean up before disappearing, but the intention is for me to finish the rest and then try to find someone to move in ASAP. So uh. That'll be exciting I guess, considering I have such little stamina. Maybe I'll hit a groove and do really well though, who knows. I've got my walker now so I can have Seat any time anywhere, but a lot of what needs done will involve lifting, bending, walking, etc etc etc and it's gonna be an entire Thing as well. kind of annoyed considering 90% of it isn't even fucking MY MESS but oh well. Can't be helped. We're doubling my POTS med, because my blood pressure can handle it and the tachycardia is responding to it favorably. Also got word from her and then confirmation from my support group that the weird low blood sugar thing I've been dealing with/feeling lately is most probably linked to the POTS as well. Fun times, but at least it's something I can now be aware of and like. Focus on keeping under control so I don't have any more nasty surprises. I already feel safer keeping a few bits of candy in my purse to fend off sudden attacks again. Safety net. Uhhhhhh. Mental health is. Wobbly. Very wobbly. But I'm no longer teetering in the pit of despair actively, more tottering around the edges precariously and peeping over the edge too often for my own good. progress still being made. i think. idk. im still here and im still alive so i can't be fucking up too terribly badly i guess.
yesterday I: moved a box of books out of my room for donation next time roomie's in town cleaned litter and took it and two bags of trash out to the dumpster lugged 40lbs of cat litter upstairs bc the other box was empty now today I hope to: tackle laundry without entirely eating shit on the stairs again (stairs are terrifying now) im too wobbly maybe put my walker together maybe try to put clothes away/vacuum if i can
down 11-12 pounds from the 21st of June. I've just been eating less. haven't really had an appetite, but I haven't been going without. mostly it and my upset stomach have forced me to have a more cautious plan with my portion sizes, and the things I've been eating have been mild to try combatting them. I'm still having treats, I'm just not eating much of them either. aside from popsicles, i went through an entire box of otter pops in like a week and a half lmfaoooooo
yay eye doctor said its not sjogrens, instead he suspects its my eyelid oils misbehaving. if you have dry eye that doesnt seem to improve with drops it apparently might be ur eyelid oils not keeping the tears you make from dissolving too fast. options to help if it's that: -warm compress for 5-10 minutes twice a day, doesn't have to be wet heat. -normal lubricating eyedrops 4x a day -gently rub and massage ur eyelids/lash line with baby shampoo in the shower to clean it and get rid of clogged oils. should show improvement within 6 months. but gotta keep doing it forever.
i just reached out to someone i dont even know if they use the account i reached out to anymore on DA. its been like 12 years since we talked, and i wasnt the best friend the last time we spoke bc my life was Garbage and i was not coping/or being treated At All™️. But we were rp buddies on aol/aim for a lot of my preteen and teen years, and they were a big sense of stability in an otherwise shitty life. i hope they see my message. i hope maybe someday i'll get a reply back.