The Ehlers-Danlos Circus

My life under the Ehlers-Danlos Hypermobility/Type 3 big top trying to manage this syndrome and the multiple other disorders and issues that fall under it. It took 30 years to get a proper diagnosis and I did the majority of the work to figure it out. Sadly not an uncommon story. Official Diagnoses: Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Fibromyalgia Things on the List to Discuss: Gastroparesis, CCI (I think we're going to sort of be treating my neck issues as CCI a little) Things They Don't Seem to Care to Help Me With or Dx: Dysautonomia (POTS), pain management, GI/GP stuff, My Flipboard of EDS articles: EDS & Related Conditions I also have a couple mental health things but I don't really want to go into specifics here. I'm also a transracial trans-national adoptee My everyday Tumblr is The World Upon My Shoulders. My twitter is on my everyday blog. My Line ID is Solielfox Just let me know who you are or drop me a line here letting me know. Wishlist Amazon wishlist Paypal PayPal 

[pianta]

peaches & cream 🍑

★ twitter | ko-fi | ig | prints ★

[ehlers-danloscircus]

Oh, hi! We had a tornado last Wednesday that resulted in a 40 hour power outage. Everything is fine. Well except my poor emotional wellbeing that's a little traumatized. Never experienced a tornado before but ya know tornado alley is moving eastward so...

[ruinedchildhood]

[90skid-com]

[ehlers-danloscircus]

I keep wanting to update on things but then I remember I haven't shared the whole story of what happened at the end of 2023 and all of 2024 and I always remember on days when it's super inconvenient.

All this to say I wanted to share something today and I remembered again but it is roaaaaaasting here today! I'm barely functioning it's so hot and humid.

[tam--lin]

I don't want to put the user on blast but I just saw a "you're never too old to start" post about the Artemis II astronauts, and, respectfully, they are astronauts on our first trip back to the moon since Apollo because their entire lives have been building up to it. Christina, the youngest on the crew, wanted to be an astronaut since childhood, has two bachelor's degrees, and has been involved with NASA since 2001, well before she joined as an astronaut. Jeremy joined the Canadian equivalent to Civil Air Patrol at 12 and did his undergrad in space science. Reid started out as a Navy pilot in the late 1990s. Victor went to a public Ivy, has three master's degrees, and became a Navy test pilot 20 years ago. These people's whole lives have been building up to this.

We are not yet at the point in human space travel where you can just up and career change to being a working astronaut* unless you already are very well-established in a closely relevant career (like medicine), or you're part of a specialty program training mission specialists (like Christa McAuliffe was).

*as opposed to a space tourist

[tam--lin]

Perhaps a better message, if we insist on mining on here, is, "it's normal for people who are experts in their fields to be middle-aged, actually"

[ehlers-danloscircus]

Yep, I started reading Chris Hadfield's memoir (haven't got a chance to finish) a while back and oh my goodness the work and dedication, mind blowing.

[spin-the-wheel-polls]

you can only do this career for the rest of your life

https://wheelofnames.com/dng-wgq

How are things going?

Great! A job I actually enjoy!

okay. I can put up with this

bad but not terrible

terrible

I don't work/results

Voting ended onApr 13

(this wheel is set in a magical world where all jobs pay enough to support yourself so this is purely about the work you do and not the money)

[throwbackblr]

When cereal boxes came with computer games

[ehlers-danloscircus]

Well I fell back to sleep but then my brain was like oh you're sleeping again well here's those upsetting grief dreams, enjoy!!

So now I think I'm just gonna nibble some chicky tendies (I get the Applegate gluten free ones) and wait till my eyes stop leaking. Maybe try to read All Creatures Great and Small.

[cyberxbattalion]

[ehlers-danloscircus]

This is by @1924us aka Christian Watson on Instagram btw

[heyatleastitsnotcancer]

Crap, I didn't realize it didn't have credit. I always try not to reblog anything stolen or without credit so thank you!

[ehlers-danloscircus]

Hehe i was like ooh nauuur, she's gonna wanna know!! 🫶🏽

[cyberxbattalion]

[ehlers-danloscircus]

This is by @1924us aka Christian Watson on Instagram btw

[ehlers-danloscircus]

Aaaaagggg! I woke up too early and just as i was about to fall back asleep the smoke detector at the end of the hall died and started its beeping torture! Now my heart is like

[titsay]

[ehlers-danloscircus]

Helllp! I got those Squishmallow pillows everyone in the EDS/chronic pain groups always talk about...

I'm too cozy and keep over sleeping!

[passionpeachy]

music taste

(acrylic markers on panel)

[ehlers-danloscircus]

Got that coat hanger pain and it's trying to rain, I have so many chores I need to do but still recovering from some other stuff (I know I still need to update on what happened in 2024) so I'm playing acnh lolol

I decided to work on flattening my island last week.

[ehlers-danloscircus]

It's my 12 year anniversary on Tumblr 🥳

Wow, I missed my 12th anniversary day?!

That seems so wild though 12 years?!