Mega update
Nov. 28th, 2017 11:50 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
ysobelOkay, so.
Survived roommate leaving.
Survived thanksgiving, which wasn't very thanksgiving-y. My mom was down with my sister, which was good because my dad and stepmom were here all day Thursday through Sunday getting things ready for the new roommate, who moved in Sunday morning. And by getting things ready I mean sorting through a lot of shit and getting rid of a lot and organizing things and cleaning things. And by all day I mean 10 or 10:30 until around 6-7:30, and while we had occasional breaks of not doing things, I didn't have any solitude, which is hard for an ultra introvert who's used to being alone half the day.
We went through all the remaining bookshelves -- I think it was somewhere around 22 shelves worth of books, netwwwn having very tall bookcases and shelves that were two or three layers deep. I probably got rid of (well, donated to library) at least three quarters of them. I think there are ... four and a half shelves occupied now, and single stacked.
I also have some fanzines I need to figure out what to do with. Not appropriate for library (especially the slash ones) but I feel weird just throwing them out.
Anyway. I mostly survived the purging/cleaning, though my dad is firmly of the "if in doubt, throw it out" camp. Which works for some things but not for emotionally relevant stuff. I had to argue for a few things, like the tardis string lights. And I drew a hard boundary of no going through yarn. We tubbed all the loose stuff but I was in no mindspace for sorting through and deciding what to keep and what not to.
#
Night before last, my bed decided to stop working.
It's an alternating air pressure mattress -- shifts under me since I can't roll or shift. Good at reducing pressure sores. But the air pump died, without warning, and ,,, it's not a very comfortable bed when not inflated. I have a request in for a replacement but that has to go through insurance; in the meantime I swapped to my old mattress (which I had kept in the closet partly as a spare for visitors, mainly for a situation like this) because it's somewhat more comfortable.
Of course this happened at the end of the Days Of Cleaning, plus I forgot my night meds that night, so I slept horribly. Which meant I felt even more like crap. I even skipped rehearsal, though it took some talking myself out of guilt/should/"maybe I'm just being lazy" stuff -- but the deciding factor was basically that staying home would reduce the chances of getting sick (because when I'm stressed and tired and feeling like crap, I'd pick up any germs floating around).
It's strangely quiet at night without the air pump running.
#
I mentioned a few entries back that I quit session because overwhelm. The entirety of the feedback I have gotten not only supports me in my path, but has been majorly complimentary about how well I wrote my letter and how emotionally mature it was and how true it felt.
Which is weird as fuck because I *still* feel like I selfishly gave up.
#
Unrelatedly.
This Saturday I will be in sf all day for a conference thingie for people with my medical condition and their families. It will be interesting getting to meet some of the people I've only talked with on Facebook.
The ... I think I've mentioned it before, but I'm making a stuffed pink bunny for one kid with FOP who's been in the hospital since march. It's finished -- I think it looks stupid and crude and amateur and dorky, but other people assure me it's adorable. The recipient isn't going to be there herself, but her mom is, and so I'm going to hand it off in person.
(One of the people I was looking forward to meeting up with, died about a week ago. Some sort of bacterial infection leading to toxic shock syndrome. She was almost 33, and I'm torn between "it's not fucking fair" and "this could happen to me ack". Rationally I know that there are FOPera in their 60s and 70s, but 40 is the median age of death, and that's sorta freaking me out to think about.)
Anyway I am ridiculously excited. Also excited because I have a clinical appointment with the main doctors who study fop. I'm not sure what all I expect to get out of a clinical visit (though I do want to ask if hyperkeratosis is common at all) but I am excited about it idek.
I'm not excited about the hours -- I can't stay overnight anywhere, which means day trip, which means getting up obscenely early (I may not make it there by 8:30 when stuff begins) and getting back late (clinical appt is 6-6:30, so probably leaving around 7 at the earliest). At least I'm not the one driving.
Oh, and one of the coordinators messaged me today saying they would be taking video stuff during the conference, for educational or whatever videos, and could I please bring some yarn and knitting needles so they could video me knitting. I am v amused. Said yes of course.
#
There's one more thing, but I'm going to do a separate locked entry because reasons.
Survived roommate leaving.
Survived thanksgiving, which wasn't very thanksgiving-y. My mom was down with my sister, which was good because my dad and stepmom were here all day Thursday through Sunday getting things ready for the new roommate, who moved in Sunday morning. And by getting things ready I mean sorting through a lot of shit and getting rid of a lot and organizing things and cleaning things. And by all day I mean 10 or 10:30 until around 6-7:30, and while we had occasional breaks of not doing things, I didn't have any solitude, which is hard for an ultra introvert who's used to being alone half the day.
We went through all the remaining bookshelves -- I think it was somewhere around 22 shelves worth of books, netwwwn having very tall bookcases and shelves that were two or three layers deep. I probably got rid of (well, donated to library) at least three quarters of them. I think there are ... four and a half shelves occupied now, and single stacked.
I also have some fanzines I need to figure out what to do with. Not appropriate for library (especially the slash ones) but I feel weird just throwing them out.
Anyway. I mostly survived the purging/cleaning, though my dad is firmly of the "if in doubt, throw it out" camp. Which works for some things but not for emotionally relevant stuff. I had to argue for a few things, like the tardis string lights. And I drew a hard boundary of no going through yarn. We tubbed all the loose stuff but I was in no mindspace for sorting through and deciding what to keep and what not to.
#
Night before last, my bed decided to stop working.
It's an alternating air pressure mattress -- shifts under me since I can't roll or shift. Good at reducing pressure sores. But the air pump died, without warning, and ,,, it's not a very comfortable bed when not inflated. I have a request in for a replacement but that has to go through insurance; in the meantime I swapped to my old mattress (which I had kept in the closet partly as a spare for visitors, mainly for a situation like this) because it's somewhat more comfortable.
Of course this happened at the end of the Days Of Cleaning, plus I forgot my night meds that night, so I slept horribly. Which meant I felt even more like crap. I even skipped rehearsal, though it took some talking myself out of guilt/should/"maybe I'm just being lazy" stuff -- but the deciding factor was basically that staying home would reduce the chances of getting sick (because when I'm stressed and tired and feeling like crap, I'd pick up any germs floating around).
It's strangely quiet at night without the air pump running.
#
I mentioned a few entries back that I quit session because overwhelm. The entirety of the feedback I have gotten not only supports me in my path, but has been majorly complimentary about how well I wrote my letter and how emotionally mature it was and how true it felt.
Which is weird as fuck because I *still* feel like I selfishly gave up.
#
Unrelatedly.
This Saturday I will be in sf all day for a conference thingie for people with my medical condition and their families. It will be interesting getting to meet some of the people I've only talked with on Facebook.
The ... I think I've mentioned it before, but I'm making a stuffed pink bunny for one kid with FOP who's been in the hospital since march. It's finished -- I think it looks stupid and crude and amateur and dorky, but other people assure me it's adorable. The recipient isn't going to be there herself, but her mom is, and so I'm going to hand it off in person.
(One of the people I was looking forward to meeting up with, died about a week ago. Some sort of bacterial infection leading to toxic shock syndrome. She was almost 33, and I'm torn between "it's not fucking fair" and "this could happen to me ack". Rationally I know that there are FOPera in their 60s and 70s, but 40 is the median age of death, and that's sorta freaking me out to think about.)
Anyway I am ridiculously excited. Also excited because I have a clinical appointment with the main doctors who study fop. I'm not sure what all I expect to get out of a clinical visit (though I do want to ask if hyperkeratosis is common at all) but I am excited about it idek.
I'm not excited about the hours -- I can't stay overnight anywhere, which means day trip, which means getting up obscenely early (I may not make it there by 8:30 when stuff begins) and getting back late (clinical appt is 6-6:30, so probably leaving around 7 at the earliest). At least I'm not the one driving.
Oh, and one of the coordinators messaged me today saying they would be taking video stuff during the conference, for educational or whatever videos, and could I please bring some yarn and knitting needles so they could video me knitting. I am v amused. Said yes of course.
#
There's one more thing, but I'm going to do a separate locked entry because reasons.
no subject
Date: 2017-11-29 02:00 pm (UTC)Sucks about the mattress. I hope it gets fixed/replaced quickly.
*Hugs*