sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
... once with my therapist and once with a new couples therapist. I am suddenly so tired that I can NOT finish any of my evening tasks. Cool.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Of the handful of people I've reached out to about my distress feelings this week, THREE of them have independently said "you are the strongest person I know."

And you know what? That legit calmed me the hell down. Thank you for the vote of confidence, loved ones. I will get through this.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
You know what? At this point I want to start keeping record to see how much time passes between each absolutely fucking terrible thing the world drops on me. Maybe I'll be able to notice that other things do happen.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Hey everyone, aside from all the nonsense which is continuing to fuck with me, I wanted to mention (wherever possible) a thing.

My birthday is a month from today. Ever since I lost a really special romantic and domestic and adventure situation related to my birthday, it has just felt awful and weird. Last year I tried to arrange a chill tea and cancelled at the last minute because I felt so off about it all.

This year I'm going to celebrate by giving myself a full day of silence, and I'll be turning off my phone as well. Which is all to say, please dont send birthday wishes.

Thank ♡

Bleh

Apr. 10th, 2019 10:40 am
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Honestly I have nothing to say which isn't frustrated or sad or afraid.
Also somehow therapy made me feel fucking... a lot worse on Monday? I feel trapped and hopeless, and that old familiar standby: unwanted.

I guess the upbeat shift of this post is that I'm making myself accomplish a few things every day. And even if it's not enough and it doesn't make me feel better, it's still a notable improvement from Sadness Standard.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Okay so I DID in fact survive and am now at home, which was amazing for a few hours. Today I am struggling with my brain having been tuned to such high gear lately that now everything else is BORING. And in a parallel brain issue, I realize that there are many things I could be doing right now but none of them are *my role* because clearly *my role* is to wake up at 6am in Chicago and go to class and work my ass off academically and do the bare minimum to keep my body functioning well and then crash asleep for a few hours. So what the hell is the rest of all this? Where the heck am i?
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Last week was super difficult in the amazing and formative kind of way. I learned a lot about my preaching abilities and was gifted a whole lot of incredibly moving sermons from my colleagues.

This week is starting off difficult in the just awful kind of way. I'm feeling deeply at odds with my professor (not constructively), and the class is not hitting me well.

More excitingly, I thought I was surviving the worst while sitting through two weeks @ 8 hours per day in classes with my slipped disc and sleep deficit. Surprise! I woke up at 2:00 this morning with the flu.

I stayed home today, but I cant tomorrow and retain any chance of passing the class. Extra fun... MCAS makes viral infections extra dangerous and I'm on a lot of immune suppressants as well.

How many times can I wonder about what percent chance of mortality I'm looking at in one month without having to add this to the pile of my major traumas? My disabilities are fucking cumulative and it's... how silly is it to say it's not fair?

I'll keep moving forward with as much determination as possible and I also can't help but wonder how long I'll be able to pursue any kind of career when the health issues are stacking up faster and faster.

In just four days I'll be home and getting Spouse cuddles again. I can make it through four days.

Right?

TDOV

Mar. 31st, 2019 03:02 pm
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I want to be with my people today, and I will not speak to a single other trans individual over the course of this godforsaken Sunday.
Cant find any affordable events in Chicago. Send love to my lonely trans ass.

Patience

Mar. 20th, 2019 08:55 pm
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Today has been about exploring the limits of my patience, which i have determined to be vast but not unlimited.

After a zillion silly inconvenient airline issues resulting in an 18 hour travel day, having to drop $140 on new lodging, and bleeding through my pants multiple times while trying to find an open bathroom, I was holding a sense of serenity pretty well. By boarding hour I was getting a bit hot around the ears from sensory overload but still going strong. Stayed patient on the flight, didn't stress out about how out of breath I got while deplaning...

Then there was baggage claim.

My checked bag didn't get transferred to my new flight. It's still in the air, and due to arrive in Chicago at midnight. There was a bit of an edge to my voice when I explored my options with baggage service, but I kept composure still. I asked for a refund and they gave me a website.

Website returned a 404 error when i submitted my info. Over and over. The error page included a number to call for further assistance. I called said number. Employee explained impatiently how to fill out the form. Yup, I snapped at her. She gave me email address for customer relations.

I'm feeling like I'd like to punch something right now and my voice is not in my control. But god help me I will get to my hotel tonight with no fucking drama and I will do it with dignity.

And also gratitude that I decided to fly over two days early.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Nothing really highlights how much our culture needs to slow the fuck down like being disabled in an airport. I've been yelled at and hurried (while moving at a fully reasonable pace which happens to be my max right now) by no less than six people this morning. It actually took longer for me to get my stuff onto the security conveyor because i was distracted by the guard yelling at me to do each step before I had a chance. There isn't time to put your money back in your wallet at cash registers. It's not personal, it's just the pace of things... and I can't help but feel like things would actually move more smoothly if people would take the stress level down a notch.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
I made it through the prednisone, and the withdrawal, and the stressful friend visit, and the million doctors' appointments, and all the while I'm still studying my ass off... I had a really hard time resting last night because I felt like I couldn't get a deep breath, but when I woke up today and felt pretty off I assumed I had just overdone it yesterday.

Surprise! The sudden arrival of my menstrual cycle! And it's one of the ones like I had as a teenager, where I have the spins and get lightheaded even while reclining!

And I get on a plane to Chicago in the morning!

If I survive this, someone owes me either a medal or a full day trip to the spa.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
My spouse is

Incomparable
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
I'm going through so many things, and many of them are oddly lovely. I just think i'll feel better if I get this on record:

I am in so very much pain.

I'm in so much pain I can't lie down to rest without twisting in it.

It's not just my spine. Ehlers Danlos is a subtle disease day to day, but to be honest

My sacrum, my shoulders, and fucking hell my ribs... it really never ends. And just because I can handle it some days doesn't mean I can face it every day. Except that I have to.

Sometimes I imagine being beaten, like with a baseball bat, because on some level that would be reasonable pain that I could ever heal from. Instead, I creak and burn and wonder if I can make it through my hospital pastoral hours this summer without a wheelchair.

Can I afford a wheelchair? Am I just being dramatic? Wimpy? If there's nothing i can do about it, can I just disregard the sensation?
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Okay one more thing, and I am really not trying to throw shade here, but we live in a modern world working on accountability and these things come up.

Say, you have a friend, and at some point some bad consent went down between you and you whoops sexually assaulted them. You've talked about it, and you're still friends.

ESPECIALLY if you're attracted to them but as a rule of thumb, you need to 100% stop initiating physical contact. They may never be comfortable touching you again, and friend, you gotta deal. But let me tell you from experience, if you stand too close or say for example casually grab their hip in passing or trap them against the wall in their personal space... friend, you are blowing that second chance.
Maintain that friendship? Keep a generous amount of personal space. Operate on the complete assumption you will never have a continued/resumed sexual relationship. Otherwise you need to be honest and tell them you just can't.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
I love that friends come to stay with me.

But i'm disabled and in grad school and kind of a hermit. So.

Please come stay in my guest room, and:

- don't touch me
- please eat the food in the fridge and cabinet, feed yourself when you're hungry
- go on adventures! Some will be without me
- you will not get goodnight hugs
- you will not hang out in my bed unless there's some kind of extenuating circumstance
- stay for days! Hang out with me for small parts of them
- you don't gotta clean but please do your dishes
- I probably shouldn't have to repeat this but please bring your own downtime entertainment
- I swear to god i'm happy to see you just understand it'll be in small doses
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
If this horrible driver revs past my window at 2am ONE MORE TIME i'm going to pitch a full mug of tea at his moving vehicle.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
2. I read a blog post from someone I secretly love about grief and it led to me writing a breakup poem to my romance with death, and I'm actually pretty proud of it, and no you can't read it.

15. The family across the street had an all-afternoon domestic violence/potential child endangerment uproar and I froze because in our poor, Black neighborhood who the hell do I call without putting more people at risk? We did not go over this in Mandated Reporting class.

9. I lost my short term memory from lack of sleep and just kind of rolled with it.

24. My mind turned into an empty, sunny room full of quiet music and whispers of the people and things that I love most.

98. A secret: I would relive those eviscerating seven weeks again, even if I couldn't change a thing about the outcome, just to have one more short chance to feel that presence with me.

6. I drove round-trip to drop Spouse at the airport, which was probably a bad idea in my state of medical impairment, and got home safely but wound up losing 30 hours of study time to exhaustion.

18. My face puffed up something awful from the meds so I spent all afternoon bathing it in tea and watching My Little Pony (no I am not ashamed).

23. My study partner surprised me with some really insightful conversation about our weekly reading, and I managed to write what I thiiiink? is a rather lovely class post about it.

11. My brother (A), my dad, my best friend since kindergarten (S), my healing partner (N), my platonic life partner (M), my teaching pastor (L), and the inimitable @tinuvielchild all showed up for me with kindness from afar.

16. I got super tripped up on my medical trauma but then burned a calming sigil and... actually calmed down?

4. Have spent maybe 20 hours researching prednisone, ehlers-danlos, mast cell activation syndrome, and pharmacological metabolism in a truly NT-fixationesque effort to feel less anxious and uncomfortable.

12. Was shockingly touched by what initially seemed like a pretty bad netflix series, and had more thoughts on death and life and connection.

19. Guided meditation still works for falling asleep, even if I can only STAY asleep for a few minutes at a time.

8. Literally can't read or study, leaving for class in T-5 days, may get very bad grades this semester, physically incapable of worrying about it.

-3. This was actually last week, but I started therapy again, finally, and I like my person.

12. Remembered to move the car for street sweeping before 9am today despite only occasionally knowing that time exists and other surprising acts of adulting.

7. Sorted, folded, and inventoried around 400 merch tees for Volunteer Site and really enjoyed it but also was not able to count accurately at the time so I had to email my supervisor and warn her that the numbers were definitely, definitely incorrect.

25. Through a combination of bubble baths, pretty smells, piano time, sitcoms, snacking, and instant messaging have managed to feel pretty relaxed and snuggled despite facing searing pain, delirium, drug reactions, and insomnia completely alone at home.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
I know I post here a lot and often when i'm raw or obnoxious (or drunk) but I appreciate the heck out of you friends for putting up with it and also all your supportive comments. Many love.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
Today, by necessity, my only goal is to figure out how to sleep.
Got home from dropping Spouse at the airport kind of scared about how affected my judgment and perception are by the past three totally-alert night.
I may have texted like ten people about it (sorry y'all).

Progress so far:
Since 11am I have had 3 gabapentin, 2 beta blockers, five shots of gin, half a wedge of brie with crackers, and a generous spritz of magnesium. I spent four hours winding down lying on a heating pad, and finally, with some intense breathing exercises, I went under for a bit.
Nearly one hour of sleep achieved. The mission continues.
sisceal: Photo of a cats paws, overlaid with a refracted rainbow (Default)
So I wrote to my neurologist asking for a letter confirming that I have debilitating migraines... y'know, like the One Migraine I have had for 15 months now and has landed me in the hospital twice after losing my ability to see... like the one that made me miss four deadlines during the fall semester because I was too sick to look at screens... like the one I have to wear sunglasses in class for...

And my fucking neurologist, who I THOUGHT was a nice guy, responded with "i'm sorry, but while unpleasant, migraine is not a disability. Most of us have had to get through grad school with them, and i'm not sure what accommodation I would recommend" EVEN THOUGH I SPECIFICALLY SAID IT WAS FOR DEADLINE EXTENSIONS IN THE EVENT OF A FLARE
That is ACTUALLY the MOST CONDESCENDING SHIT I can imagine and i'm so fucking sick of being in pain and having doctors laugh it off that I want to beat him and anyone else within a mile radius into the fucking ground

Oh and nevermind that the migraine is almost certainly caused by the same disease that made me skip this spinal disc and of course the only medication bringing my pain down from a 9 right now is uhhhh prednisone which makes me physiologically incapable of sleeping.


DIE DIE DIE DIE DIE DIE DIE DIE
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