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Last night dislocated jaw and this mornings dislocated shoulder are making themselves known.
No sleep for me 🙄
Normally about 90% of the time I only get bad sublocations at the worst, although they can take days to go back in if I can't do it manually I am still fairly functional depending on the location. With then minor sublocations and subluxations being my constant for every day.

Full blown whole sodding joint out of whole sodding socket events are not normally this frequent. I need to check the post again tomorrow but I don't think my moth guard thing to wear in the day has come yet (it was supposed to be here by the 5th of January according to the hospital bit we all know how well that goes.) I Am Supposed To Have The New One Now 😣
I was told to stop wearing it because it wasn't *exactly* the right one, but when it's the only thing giving me any relief I nodded and kept with it till the next solution was supposed to turn up.
My symptoms have decided to creep up on me. My shoulder went fully out again. Where there are no people. Luckily the whole use the wall and pray thing worked okay 😶

And now I can't sleep and am left again with the pain that will not respond to painkillers (just why?!) it's 2am. The rest of today is a wheel to the doctors and then a write of.
EDS: 1
Zoë: 0

#spoonie #jawdislocation #dislocations #jaw #ehlersdanlossyndrome #ehlersdanlos #HEDS #EDSIII #chronicpaindisorder #NEAD #ouch #oopsIdiditagain #zoestribe

Repost from @theremightbecupcakes 13/365 There Might Be Cupcakes Podcast Episode 33: Best Fiction of 2017 (plus catchup on my disability status, and podcast plans for the year). On @podbean , @stitcher_podcasts , @pandora , and wherever else you catch your pods. 🎧 Host URL: https://theremightbecupcakes.podbean.com/e/33-best-fiction-of-2017/ #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

There Might Be Cupcakes Podcast Episode 33: Best Fiction of 2017 (plus catchup on my disability status, and podcast plans for the year). On @podbean , @stitcher_podcasts , @pandora , and wherever else you catch your pods. 🎧 Host URL: https://theremightbecupcakes.podbean.com/e/33-best-fiction-of-2017/ #books #amreading #bookstagram #bookpodcast #bookpodcaster #paper #beyourownheroine #EDS #EDSiii #hypermobility #POTS #fibro #fibromyalgia #zebra #zebrastrength #spoonie #spoonie #bujo #commonplacebook #handlettering #trypod #podcast #beyourownheroine #carlahufstedler #podcasts #carla #theremightbecupcakes #horror #planner #bulletjournal #podernfamily #ladypodsquad

12/365: working on my own writing while rediscovering Ani’s. Working on the novel “Watching the Detectives” that I read from in episodes 14 and 28 of @theremightbecupcakes podcast, so there’s more to come. “I am beyond your peripheral vision/so you might want to turn your head” #anidifranco #music #lyrics #love #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #amwriting

11/365. This is the switchback I have to traverse to see one of my doctors. Known as the Devil’s Backbone around here. Took a video of the going-home ascension and descension, then grabbed this photo from the video. Yes, that’s a tight curve you’re seeing around that stone. #mountains #virginia #blueridge #appalachianmountains #nelsoncountyva #nelsoncounty #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #winter #winter2018

10/365. This sublime mug is my Secret Santa present from the wonderful @sofakingpodcast group. How splendiferously perfect is this mug❣️ I also received a pack of happy socks, which just made the present that much more special. Coffee, tea, hot chocolate...today is episode day for @theremightbecupcakes, so today it holds pens and midliners for me. #itssofluffy #itssofluffyicoulddie #gifts #gratitude #theremightbecupcakes #podcasts #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

9/365. Have had tremendous fatigue today—been asleep for most of it—so the day’s pic is my #cpap mask. I have obstructive sleep #apnea, likely due to Ehlers-Danlos. EDS is a disorder of the body’s collagen—no structure or connecting tissue works quite right. Up side: I get to pretend to be “Major Tom”. Going back to sleep now. Again. Night-night. 💤 #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #selfie #greeneyes

8/365. Got some fresh air today. My husband and I drove up and around the mountain to see how the river was faring—I haven’t seen our river in so long. This is the Little Piney. I love the constraint in textures between the ice crystals and the boulders. The Little Piney flows down the mountain and meets and becomes the Big Piney at the bottom of the mountain. Glad we got out when we did; it’s snowing and freezing rain now. #winter #winter2018 #virginia #mountains #blueridge #appalachianmountains #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #amherstcounty #amherstcountyva

7/365 of a picture every day. Flared up heavily, so snuggling with my heating pad owls and amusing myself with ghost photography, reading and (after my vision blurred) podcasts. Planning to record There Might Be Cupcakes Podcast episode 33 tomorrow, God willin’ and the creek don’t rise. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #theremightbecupcakes

5.5/365: my nursemaid, my #dachshund Ellie. She is a #doubledapple #shorthairdachshund rescue, and the worse I feel, the closer she sits—whether I like it or not. The household joke is that I cannot lie about my well-being, because all anyone has to do to check on Ellie’s proximity. #elliethedachshund #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #dachshundsofinstagram

5/365: Today’s picture, since I am down with the flu, is screencaps from the @ancestry app We’re Related. I’ve done quite a bit of #genealogy work (I am the xth great-granddaughter of King James via a mistress, so #clanstuart), so I am pretty certain these ancestors of mine are correct. And I know the official White House genealogists do not play around, so...❣️I am honored to be related to these two marvelous people. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #scales #teague #pettigrew #obama

4/365. Today’s picture is the journal itself, a Christmas gift this year from my lovely parents. It’s a hand-stitched beauty purchased from the #Virginia historical site the @michietavern, and it has the richest handmade paper. I am journaling for each day, leaving a 4x4 space for each photo. I will then print them in batches, once a month or so, through the @shutterfly app (yay, free 4x4 prints with shipping!), and my art and journaling will be ready to receive the photos I’ve shared here. The poetry I’ve written on the frontispiece is #maryoliver
“When it’s over, I want to say: all my life I was a bride married to amazement. I was the bridegroom, taking the world into my arms. When it is over, I don’t want to wonder if I have made of my life something particular and real. I don’t want to find myself sighing and frightened, or full of argument. I don’t want to end up simply having visited this world.” #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #journaling #poetry #journals

3/365. Today was a doozy, so I thought I would photograph one of EDS’s manifestations in order to illustrate today: my peculiar fingers and swollen knuckles. See how some of my fingers are crooked? They are all double jointed—they will bend backwards at their middle joint in an alarming party trick I used to do as a kid. All of their joints are loose. I think my decidedly crooked pinkies (for both of them are like that, elegantly inelegant) might be due to dislocations while I was still in the womb. Perhaps just a fancy. My piano teachers loved my strange hands because of my extended octave reach. Strettttttch. 🎹 I like my fingers but despair of my ever-swollen knuckles, thank you EDS, thank you fibro. I actually rotated this photo before posting, because the original shot showed the swelling too well and shockingly so from that angle. The ring is a spoon, from my best friend, so I always have #onespoonleft. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla

2/365. Days like today are why I started this #apictureaday2018 project. So much pain and brain fog that everything becomes an extreme exercise in patience. I have put in the good fight, checked off a task or two, and now am putting the notebooks and planner aside for meds and a book—a good mystery that I hope distracts me from the agitation that the high levels of pain cause (fight or flight) The #owl is a Christmas gift; he’s actually an #assistivedevice, the cutest heating pad ever. Going to go put him in the microwave and try to read. Any name suggestions? #amreading A Door in the River, #hazelmicallef series no. 3, #ingerashwolfe #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #bookseries #owls

Undertaking a personal project to expand my somewhat #homebound #chronicillness world: one photo a day of my life. I received a beautiful journal for Christmas, so I am going to take a picture each day of what my day looks like—good, bad, or ugly. More connection with my life, not letting days slip by with #chronicpain. More engagement with myself and my world. Starting the #2018project with a selfie, and it illustrates my word for the year: light. Thanks to @acolorstory, I was able to create a light/shadow, yin/yang effect with my selfie. So inflamed, flushed & hurting today, but starting with my own face. Let’s do this, 1/365. #carla #apictureaday #apictureaday2018 #beyourownheroine #greeneyes #heterochromia #greyhair #foureyes #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong 💜 #apictureaday2018carla

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