#chronic disease

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benedarkmansabookiread:

Disabled… in SPACE!


Was perusing file770 a nerdy news aggregator and found this⤵️ announcement

so spread the word they’re looking for disabled applicants to ride a Vomit Comet,

did the preliminary research, it does not appear to be a scam, the parent organization SciAccess grew out of conversations at scientific conferences about equity and inclusion in STEM. Both ZERO-G social media pages have confirmed the partnership


MIT has been conducting annual flights of 50 students with the same company, ZERO-G, out of Fort Lauderdale, since 2016 (the link gives an idea of what experiments are like.)

(Taken from this LightHousearticle)

“The goal of this mission is to bring together the largest and most diverse group of disabled crew members in a weightless environment, with the hopes to learn how to adapt and make accessible outer-space travel for disabled space explorers, scientists, and researchers. The Mission: AstroAccess parabolic flight is scheduled to take place on October 17, 2021, launching from Long Beach, California.

“Our mission is to change outer space and change the world. If you are a disabled person who is confident, enthusiastic, playful, and literally willing to float upside down to change the future, we are looking for you!” says Dr. Sheri Wells-Jensen, Associate Professor of Linguistics at Bowling Green State University.”


There is an impressive team behind AstroAccess, you can find the full list on their site here.

Here’s a couple of those bios.

Anna Voelker is the founder and Executive Director of the SciAccess Initiative, an international program dedicated to advancing disability inclusion in STEM. Through SciAccess, they lead numerous science inclusion initiatives, including an annual conference launched by their receipt of the 2018 Ohio State University President’s Prize. Anna specializes in accessible space science outreach for diverse learners and has worked extensively with blind and low vision students using 3D printing and data sonification. In June of 2021, Anna joined the Aspen Science Center as its new Executive Director. Anna is a 2018 Brooke Owens Fellow and previously worked at NASA Kennedy, NASA Goddard, the Space Telescope Science Institute, the International Astronomical Union’s Office of Astronomy for Development, and the Aerospace Corporation.”

Eric Ingram is the Founder and CEO of SCOUT Inc., a company de-risking space operations with sensor suites that enable spacecraft to see and understand the area around them. He also currently serves on the Board of Directors for the Space Frontier Foundation. He was previously an Aerospace Engineer for the Licensing and Evaluation Division of the FAA’s Office of Commercial Space Transportation, where he gained expertise in the regulatory environment. Prior to this, Eric was an engineer for Deep Space Industries, where he designed cubesat subsystems for testbed missions. Outside of the space industry, Eric previously served as the President of the United States Wheelchair Rugby Association, leading the USWRA to its largest budget surplus in its 30+ year history. Eric has competed in the sport of wheelchair rugby for 15+ years, competing domestically for several club teams, and internationally with the US Developmental team. Eric holds a Bachelor of Science in Physics from Old Dominion University, most of a Master of Science in Electrical Engineering from the University of Houston, a sport pilot certificate, and is working towards SCUBA certification.”

Dr. Sheri Wells-Jensen is an associate professor of linguistics  at Bowling Green State University in Bowling Green, Ohio. Along with various aspects of astrobiology, her research interests include social aspects of human colonization,  disability, the relationship between language, embodiment and thought, language evolution and ways in which alternative sensory inputs could influence the evolution of scientific thought. She is on the board of SOCIA (Social and Conceptual Issues in Astrobiology and METI (Messaging Extraterrestrial Intelligence) International.”

Dr Jamie L. Molaro is the Executive Director of Disabled for Accessibility in Space (DIAS).  Dr. Molaro is a planetary scientist at the Planetary Science Institute and located geographically with host institution the Caltech/Jet Propulsion Laboratory. Her research focuses on understanding the way that rocky and icy materials fracture and break down, driving landscape evolution on asteroids, comets, and moons. She is also a team member on NASA’s OSIRIS-REx mission to retrieve a sample of rock from an asteroid surface. Service is an integral part of Molaro’s career, including organizing and running exhibitions and workshops on science and data-driven art, and leading DAIS (Disabled for Accessibility in Space). DAIS is a peer networking, support, and advocacy group for disabled and chronically ill people in space science and related fields and professions, and proud collaborator in Mission: AstroAccess.”

This is how i feel. I smile, I tell jokes, I try to ignore it but the thruth is, I AM HURTING

This is how i feel. I smile, I tell jokes, I try to ignore it but the thruth is, I AM HURTING


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Sometimes i just want someone to hug me and say i know it’s hard. You’re going to be okay. Here is c

Sometimes i just want someone to hug me and say i know it’s hard. You’re going to be okay. Here is chocolate and 6 million dollars.


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I Just want to sleep until i wake up completely better.

I Just want to sleep until i wake up completely better.


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Top 10 things to not say to someone with a chronic illness

Top 10 things to not say to someone with a chronic illness


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Hmm …. I’m not sure if i actually have some free time

Hmm …. I’m not sure if i actually have some free time


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spondy-spoons:

Today was another bad day for me. This made it infinitely better and put a smile on my face. Hang in there my spoonie friends. 


*Side Note: I know there’s a negative stigma because on bad days we are often seen as lazy instead of trying to cope and get better. I just think this song is fun  and has a cute video.*

the-sunshine-cult:jenroses:elierlick:This is it See also autismSee also Ehlers Danlos syndrome &

the-sunshine-cult:

jenroses:

elierlick:

This is it

See also autism
See also Ehlers Danlos syndrome & Fibromyalgia

It’s amazing how much more visible things become when you accept that they exist.

It’s amazing how much more visible things become when you accept that they exist.

Definitely on the EDS thing. But it’s really worth pointing out that most people who were diagnosed with fibromyalgia are later correctly diagnosed with something else after testing.

If you have a fibromyalgia diagnosis, you probably actually have EDS, lupus, jra, psoriatic arthritis or something else. I’m not even being ableist or rude, it’s literally what Penn State and John Hopkins told me and my family after I realized that I knew 27 people and were related to 9 people who had their diagnosis fixed (specifically my mom, sister, brother, neice, nephew, several cousins and myself)

Fibromyalgia is often a placeholder diagnosis for when your doctor doesn’t know what to say and has no idea what tests to run. While it is a real disorder, it’s way overdiagnosed, and probably 80% of people who think they have it and therefore have very few treatment options actually do have treatments available for what is actually going on.

If you believe you have fibromyalgia, you have to get a second opinion from a specialist, like a geneticist or a rheumatologist who specializes in autoimmune and genetic disorders. For my family, we realized that we all have EDS and some have psoriatic arthritis. The change in diagnosis and treatment let my mom and sister go back to work for the first time in years and got my twin cousins’ off opiates and out of leg braces. ‍♂️


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does anyone have any tips for keeping rooms tidy with chronic illness? I’ve been struggling as I dont always have the energy to put things back, thank you!

does anyone have any tips on hygiene and chronic illness? I dont have enough energy to brush my teeth, shower, brush my hair etc. most of the time and it’s not great. thank you!

A quick psa:

There is only one appropriate time to ask someone what their disability is. This being, if you are a medical professional who is currently treating them. There is litterally no other time when this is ok, if someone wants you to know. They. Will. Tell. You. Otherwise it is none of your business. This includes mental health problems.

So… I won’t be posting anywhere for awhile. I’ve had a chronic illness that makes me very sick, and I’m going to be spending some time in the hospital treating it, and I need to focus on having the upper hand. Thank you for your understanding.

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