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Katherine's avatar

Excellent ideas. Thank you.

Please also consider Nurse Practitioners in addition to PAs. They are often focused on education and quality of life.

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Kira Stoops's avatar

Great point—I went back and forth on including but I will update. :)

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Molly Freedenberg's avatar

I've found almost all my doctors through Facebook groups and sickie websites and asking other spoonies for referrals. I have found exactly zero truly helpful docs by looking at in-network catalogues or websites, or asking my GP for referrals. In fact, I wasted so much time and money doing the latter.

I found my diagnosing doctor by contacting Bateman Horne (which I'd heard about through Health Rising or the groups or... somewhere) and them referring to someone who'd studied with them and started a private practice (since they weren't taking new patients).

I found my next doc by finding out who Jen Brea saw and then getting on a waitlist.

And my next by asking around to see who else is in the field, well-respected, and a woman.

My OCD therapist was a referral from my amazing somatic therapist, who had to ask a friend.

My craniosacral therapist was a referral from another craniosacral therapist who wasn't the right fit.

I just ask a lot. I research a lot. I don't stop til I find someone. I look at the national organizations. I look at the TED talks. I'm not afraid to call the top specialists. My mom is also really good at admin and knows how to get through red tape and fight insurance to get things covered.

If there were one skill I wish I could teach every new spoonie, it's how to do *waves hands around at this post* all of this. Thanks for writing this series.

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Amy - The Tonic's avatar

EXCELLENT series, invaluable information, and I just love the way you weave in humor. Sent you a lil Venmo something. Now you know my last name but keep it in the vault, sister 🤫😬

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Kira Stoops's avatar

Aw. Thank you so much, Amy. I already knew from the spoon delivery but lips are SEALED! Also, why didn't I think to not put my last name onto a column where I discuss my bowel habits in depth...

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Amy - The Tonic's avatar

lol, (p)oopsy! also, I didn’t realize Amazon revealed my last name to peeps - yikes!

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