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Hi all.

This post has been a long time coming but I wanted to update yall on doodle

A couple months ago it became clear I would not be able to keep doodle as my life circumstances changed. I had to make the absolutely heart wrenching decision to rehome him he is in a better place right now than I could offer him in my current position but I miss him so much

This blog will stand a s a place for my memories of him and I may add to it with posts about disability but there won't be any more about doodle or my experiences with a service dog

Thank you all for going on this journey with us

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For people in the UK:

Link to take part: https://www.decodeme.org.uk/

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GUYS

HEY YOU GUYS

WATCH THIS

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hierarchy of disability mobility aids

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So pretty frequently I see people saying stuff like "Where does the zebra come from with EDS? Is it because we are prone to stretch marks? So we have stripes!"

No.

The zebra is a symbol for ANY rare disease, not just EDS. In medical school, providers are taught "if you hear hoof beats, think horses, not zebras." Meaning think of the common causes for a person's symptoms, not rare. Doctors are taught to think of and rule out common conditions before you jump to looking for rare conditions. But sometimes, it is actually the rare disease. It is the zebra.

So that is where the zebra mascot comes from for any rare disease. Unfortunately, the EDS society has co-opted the zebra specifically for EDS.

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This is my survey on experiences of adolescence and age of diagnosis/realization of disability. If you had a disability before the age of 26, (diagnosis not required) please fill it out. The more responses I get, the more likely I am to be approved for an undergraduate research grant in order to make this something that can actually enter the literature. As far as I can tell, this is the first survey of this kind that includes people that do not have a formal diagnosis, so it’s providing some really important information!

If you do not have a disability or weren’t disabled before the age of 26, please pass this around! The more participants this gets, the better the data will be.

Tagging a few people to hopefully boost this. The wider it spreads, the better.

@capricorn-0mnikorn @phoenixonwheels @thebibliosphere​

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Sometimes I wish I looked how I felt so people would stop thinking I’m faking it or exaggerating

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talking to potential employers like 

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this is exactly what customer service is like

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Zoom Dog

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Hello, I'm looking for research participants for my dissertation on chronic pain. If you have chronic pain and a spare fifteen minutes or so I'd love it if you could check the above survey out.

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Shout-out to the "not like other girls" girls who turned out to really be not like other girls

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Biden signs PAWS Act, which allows the Veterans Administration to pay for service dogs for Vets!

now that’s good news, hopefully this can extend to all people with disabilities in future, a service dog can cost over 20k to train.