#medaesthetic

I got dressed up with the intention of taking some awesome hospital glam photos in my GP’s office today, but… Sometimes, it’s just not going to happen.

I had to try on about 10+ different pieces of clothing before I could find an outfit that wasn’t just falling off me thanks to the 25lbs I’ve lost in the past 6 months. Getting dressed and undressed over and over with joints that don’t stay in their sockets, and low blood pressure…

You maybe can’t imagine how that leaves me feeling, but let’s just say it’s not glam. And that’s completely okay. A big lesson that has featured in my life these past few years is learning how to have flexible expectations of myself. How to let go of an idea that may not be possible given my physical limitations in that moment.

I’m still learning. It’s all about experience points and leveling up. There is no level cap in these lessons, just like anyone’s life, sick, disabled, or not.

Subtle hospital glam. Ambulatory medical tests require you to ‘go about your ‘normal’ activities’ while undergoing the testing. This was my latest 24hr holter monitoring (ambulatory ECG). It happened to fall on my 10 year anniversary with my love.

This was taken as I was getting ready to go out for our date. Seeing these photos a week later, I look sad; even though that wasn’t my intention. On reflection I think I was sadder than my steel-braced consciousness was allowing me to perceive. A night or two later I had my very first enormous, sobbing, spluttering cry since the arterial dissection/stroke in 2013.

When I took these photos I intended to share them as a ‘looking glam and awesome, despite this ugly medical inconvenience’. I wanted to look peaceful. Divorced from that moment, instead, I look somber; almost funerary given my clothing.

Grieving is fucking hard. It’s even harder when it’s for yourself.

Rainy ninja missions. Keep on staring, random strangers; IDGAF.

Late night #HospitalGlam because maybe some things are meant for darkness. Today I advocated for myself to get the electrode connectors that I’m not allergic to. Sometimes it’s even the small wins that power our engines for better care.

Full Circle! Refueling upgrade complete!

This is my feeding pump, it is indeed tiny. All things considered, even including the liquid feed its not that heavy either. The bags for the feed come in two sizes: 500ml & 1L; so far I’m using the 500ml bag which isn’t much bigger than the pump itself.

Am I a cyborg? An astronaut? A ghostbuster? Pretty sure this means I get to collect backpacks now.

h. e. a. l. i. n. g

HospitalGlam :; errors in framing. I like it anyway. Letting go of perfection has personally been my biggest obstacle with disability. It’s also been one of my greatest learning moments… To learn that absolutely nothing will go exactly as planned, or even expected.

That to seek perfection is to seek out futility. ///

PT this morning. At this point I’m only going for osteopathic management. Hopefully after I recover from surgery I can get back to strengthening.

Both cripples and punks can be happy too (;

Trying on jeans. Painful, but necessary when you’ve lost 4 clothing sizes.

Why are dressing rooms some of the least accessible places in all of retail? Disabled people want to try on nice clothes too, fuckers.

Android in Space. I’ve finally discovered a way to break the icy exterior of my Internist… Wear awesome space leggings. First time I think I’ve seen him smile. Thanks, Jeffie! Also, my Zak Smith shirt… One of my faves.

Cripple Punk with all the angles, city, mountains and sea. Shorts & Scarves & sunny winters.

HospitalGlam from this morning… Some blood tests which I’m used to now, but I forgot to warn the phlebotomist about the Ehlers-Danlos and she used a large needle. This resulted in two things… A mild vaso-vagal response due to the pain (blood pressure drop/dizziness etc) and then as I was leaving I sprang a leak and gushed blood everywhere. For whatever reason connective tissue disorders can cause excessive bleeding in some cases. I have this problem with a lot of things, but as long as they stick to the small child sized needles I usually just leave with a fantastic bruise.

Self Portrait in recovery.

| After yesterday’s feeding tube change, coming out of sedation. I had to advocate hard, as always. So it is with rare disease. The nurse and doctors did congratulate me when I tried to apologise for any terseness.

Feels a little autumnal today so that means it’s nearly my favourite season to wear little shorts (;

What a torture train this has been.

Sorry I haven’t been around much, tumblr. I need to come back and do some writing and share some photos. My soul hurts.

In the meantime, follow me on Twitter (@cherryrae) or Instagram (@cherryperson).

Sassy, accidental selfie

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It’s world Stroke Day today. Two years ago and one month I had a dissection (rupture) in an artery in my neck. This temporarily cut off blood supply to my brain, similarly to how a blood clot would. Mine is a rarer form of stroke, and my dissection was spontaneous (no trauma) due to the fact that my blood vessels are weakened by my faulty collagen.

This is extremely rare, BUT! That doesn’t mean perfectly normal young people aren’t at risk of strokes too. Strokes aren’t just old people. 25% of strokes are in people under the age of 45. The dissection that happened in my neck, can also happen in perfectly healthy people from trauma (usually weightlifting, moderate car accidents or even chiropractic adjustments). Young people can also suffer from blood clots (the usual cause of stroke in most people).

Know the signs. They’re not always as obvious as the common acronyms proclaim (FAST). In my first stroke I had no one-sided weakness or numbness that I noticed. I DID have vision loss, severe sudden headache, and dizziness (that I get a lot of anyways). I also experienced confusion and a sense of DREAD like I have never felt before. I missed my stroke and so did the ER triage.

I was extremely lucky that my blood flow went back to normal on its own as it was something like 8-9 hours before I got to see a doctor. Don’t let the same happen to you!

My second stroke DID include one sided weakness, but it was extremely brief. Stroke is not always as obvious as you’d expect (as in the more common severe face drooping and speech difficulties). Be aware. Thankfully the ER doctor I finally saw knew right away what was probably going on.

I feel incredibly lucky to be a stroke survivor! ❤️

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I think I mentioned this already, but I’ve got a new computer and a new, updated version of Photoshop, and adjusting to it is hard.  Plus, it’s pretty demoralizing to have most of my photos come out super grainy, even though I’ve worked so hard to try and fix it.  So that’s why I’m not taking and/or editing a lot of photos.  Anyway, here’s an outfit from March, with what may be my new favorite skirt.

[Image description: one full-body photo of a young woman (me) with orange hair that’s been pincurled.  I’m holding a metallic cane and standing indoors in front of a white wall.  I’m wearing an off-white linen blouse tucked into a rainbow plaid midi skirt.  I have on a black belt, “nude” tights, red lipstick, and black-and-grey sneakers.  As always, I’m wearing my round black glasses.]

I planned this outfit last year but then it got too cold to wear… and I was gonna wear it with my brown flats but then I broke a tiny bone in my foot and there’s all these annoying complications… and now there’s a pandemic. damn.  This outfit came out very coordinated, though!

[Image description: one full-body photo of a young woman (me) with orange hair that is rolled back in front and pulled into a ponytail in the back.  I’m standing indoors, in front of a white wall, holding a metallic cane in my left hand.  I’m wearing a navy blue tank top tucked into a yellow/orange/tan knit skirt that hits just above the knee.  The skirt has a sporty stripe of white at the hem, with narrower navy stripes.  Over the tank top, I have on a white blazer.  I’m wearing brown earrings, a navy blue scarf tied around my ponytail, “nude” tights, red lipstick, and brown hiking boots.  As always, I have on my round black glasses.]

Who’s this prep lmao

[Image description: one full-body photo of a young woman (me) with medium-length (and slightly damp) orange hair.  I’m standing indoors, in front of a plain white wall.  I’m holding a metallic cane.  I’m wearing a dark red pullover sweater–I think I had a collared shirt on underneath, but it’s not really showing.  The shirt and sweater are tucked into a khaki skirt that buttons down the front and hits at mid-calf.  The skirt is belted with a wide black belt.  I have on “nude” tights and black-and-grey sneakers with white soles.  I’m wearing dark red lipstick.  As always, I have on my round black glasses.]

I got this gorgeous dress completely free from ThredUp–at first I thought it was a mistake that they’d refunded me the money and I was getting away with something, but it turned out that they’d discovered some stains after I paid and gave it to me for free.  It’s 100% silk and washing it is going to be a huge (and expensive) pain in the ass, so not charging me for it seems pretty reasonable.  The color is more teal in real life (I don’t really like pure blue) but my camera struggles with stuff in the teal and red-orange categories and always messes up the colors.

[Image description: one full-body photo of a young woman (me) with orange hair that’s been pincurled into vintage waves.  I’m standing indoors in front of a white wall, holding a metallic cane.  I’m wearing a blue (teal, really) silk dress with a tie at the neck and a ruched section at the waist.  The skirt goes to just below the knee.  Over it, I have on a black cardigan.  Under the skirt, I’m wearing “nude” tights.  I have on red lipstick and black snow boots.  As always, I’m wearing my round black glasses.]

Well clearly this was for work, but hell if I can remember anything else about when I wore this.  It’s from the end of February, I think.

[Image description: one full-body photo of a young woman (me) with bright orange hair that’s braided and pinned at the back of my head, with long bangs hanging free.  I’m standing indoors in front of a white wall, holding a metallic cane.  I’m wearing a blue-green silk tank top tucked into a brown calf-length skirt that’s belted with a black belt.  Over the tank top, I have on an off-white robe/cardigan sort of thing, made of flower shapes all connected together with little holes here and there.  It has a border of blue-and-green paisley fabric around the neckline and the front.  I’m wearing bright red lipstick, “nude” compression stockings, and black-and-grey sneakers with white soles.  As always, I have on my round black glasses.]

I converted this to a “night out” look by switching to khaki shorts and hiking boots and just went Full Jurassic Park Gay.

[Image description: one full-body photo of a young woman (me) with orange hair pulled back and braided in a low updo.  I’m standing in front of a white wall, holding a metallic cane.  I’m wearing a tan-and-white striped long-sleeved button-down over a muted orange tank top.  (The button-down is somewhat oversized and loose.)  Both are tucked into a pair of dark brown suede pants, which is belted with a thin black belt.  The pants are tucked into plain black snowboots.  I have on bright red lipstick.  As always, I’m wearing my round black glasses.]

This color combo looked sooooooo much better in natural light.  I got to work, and the first time I went to the bathroom there I cringed SO hard when I saw my outfit under fluorescents.

[Image description: one full-body photo of a young woman (me) with medium-length orange hair.  I’m twirling in front of a white wall, holding a metallic cane.  I’m wearing a tiered yellow dress with geometric white patterns on it, which hits a little below the knee.  Over it, I have on a maroon pullover sweater, which is belted with a black belt.  I’m wearing dark grey tights and plain black snowboots.  I have on dark red lipstick.  As always, I’m wearing my round black glasses.]

time for… Sleeves

[Image description: one full-body photo of a young woman (me) with orange hair that is in a low, braided hairdo.  I’m standing in front of a white wall, holding a metallic cane in my left hand.  I’m wearing a light-blue-and-white striped shirt with big, ruffled sleeves.  It’s tucked into a pleated, khaki skirt that goes to about mid-calf.  The skirt is belted with a black belt.  I have on black-and-grey sneakers and “nude” tights.  I’m wearing silver stud earrings, mixed metal earrings that look like pansies, and bright red lipstick.  As always, I have on my round silver glasses.]

Well that took me even longer than I thought it would, but I finally have Photoshop set up on my new laptop!  I’m having some issues adjusting, since it’s a much newer version, and some of the controls are extremely un-intuitive.  I also find that this laptop can only have, like, three things going on before it crashes horribly.  Not sure if something is wrong with the computer, or if it’s just a Windows thing.

[Image description: one (grainy) photo of a young woman (me) with orange hair up in crappy victory rolls.  I’m standing in front of a white wall, holding a metallic cane in my left hand.  I’m wearing a collared, light brown dress with a wrap front and tie waist, and a hem that hits just above the knee.  It has a white polka dot pattern.  Under the dress, I have on dark purple-red tights.  I’m wearing a black cardigan and black-and-grey sneakers.  I have on dark red lipstick and silver earrings.  As always, I’m wearing my round black glasses.]

I finally have new winter boots!  These were a present, so I got them a while ago, but I had to return them for a half size up.

[Image description: one full-body photo of a young woman (me) with medium-length orange hair.  I’m standing in front of a white wall, holding a metallic cane in my left hand.  I’m wearing a yellow button-down under a black cardigan that’s partially tucked into my skirt.  Said skirt is khaki and pleated, and it hits a little above mid-calf.  It’s hard to tell, but I have it belted with a plain black belt.  I have on “nude” tights, but they’re not showing, since my plain black boots go right up to the hem of my skirt.  I’m wearing red lipstick, and a brooch that looks like a little pie.  As always, I have on my round, black glasses.]

I organized my mending pile (you may have seen me mention it in my Instagram stories if you follow me there) and it’s really motivated me to actually work through it and fix things.  I don’t know if that’ll hold as I start working on the more complicated mends/alterations, but this sweater was an easy one–just a little hole on a seam.

[Image description: one full-body photo of a young woman (me) with orange hair that’s twisted back into a messy bun.  I’m standing in front of a white wall and holding a metallic cane in my left hand.  I’m wearing a light brown collared dress with white polka dots that goes to just above the knee.  Over it, I have on a dark green cardigan, with a gold sword brooch pinned to the chest.  I’m wearing “nude” tights, with an ankle brace on my left ankle.  I have on red lipstick, gold-and-green earrings, and dark brown hiking boots.  As always, I’m wearing round glasses–but these new ones are black.]

Yeah, I’m into sweater vests now I guess.  (This isn’t actually meant to be a sweater vest, but it works well as one.)

[Image description: one full-body photo of a young woman (me) with orange hair twisted back into a ponytail and tied with a brown scarf.  I’m standing in front of a white wall, holding a metallic cane in my left hand.  I’m wearing a bright yellow collared shirt under an off-white knit tank top that I’m wearing as a sweater vest.  Both are tucked into a brown skirt that goes to about mid-calf, which is belted with a darker brown belt.  I have on dark red lipstick, a dark brown cardigan, “nude” tights, and dark brown hiking boots.  As always, I’m wearing my round silver glasses.]

Big Leia Energy

[Image description: one full-body photo of a young woman (me) with orange hair up in milkmaid braids.  I’m holding a metallic cane in my left hand and standing in front of a white wall.  I’m wearing an orangey-pink button-down hanging loose over dark blue skinny jeans.  Over the button-down, I have on a reddish-brown cardigan and an off-white knit infinity scarf.  I’m wearing chunky silver earrings, dark red lipstick, and dark brown hiking boots.  As always, I have on my round silver glasses.]

Interestingly enough, when I went to talk to my boss while wearing this monitor, she mentioned that she’s had to wear one in the past.  And the day before, when I went to get my hair dyed, my hairdresser also recognized that it was a Holter, but I was expecting that because I know he has heart problems too.

[Image description: one full-body photo of a young woman (me) with pin curled orange hair that’s twisted back in front and pulled into a ponytail.  The ponytail is tied with a black scarf with white polka dots.  I’m standing in front of a white wall.  I’m wearing an off-white ¾ sleeve linen shirt tucked into a khaki pleated skirt that goes to about mid-calf.  The skirt is belted with a black belt, and I have a cell phone case clipped to it.  There is also a sensor coming up from the front of my waistband and hanging around my neck.  Under the skirt, I have on “nude” tights.  I’m wearing red lipstick and black-and-grey sneakers.  As always, I have on my round silver glasses.]