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Cyrilla Baer
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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

My Email to the CDC

3/27/2019

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Hello,


I’m Cyrilla Baer (Pond). I was a professional stage actress (www.CyrillaBaer.com) until the hypermobile Ehlers-Danlos Syndrome I’d been fighting (undiagnosed) all my life ripped my beloved career from me: https://www.quora.com/Did-you-ever-have-to-walk-away-from-something-you-loved-and-why/answer/Cyrilla-Baer?ch=10&share=a8f11da9&srid=uNijQ.


I’ve been taking low doses of Tramadol since 2012. My original dosage is still fine and I mostly take it at night - I’ve adjusted to my normal daytime pain (basically level 2-3 with bursts of 8 as my bones slip out of place), but sleep is harder with pain. I also sometimes take it after weekly physical therapy or other exercise. My meds work for me. I don’t abuse them. But my pain doctor is saying I need to consider implanting a morphine pump because access to these pills could be cut off at any time. I’m supposed to go to more medication to be sure I can get any medication! I’m supposed to move to a pump or patch that drips into me 24/7, as opposed to medicating when I really need it! And face surgery which is supposed to be avoided for EDS except in urgent cases because we don’t heal well!


How is this medicine? How is this helping anyone? How is this doing “no harm”??


Law-abiding citizens are being made to suffer for no reason. We see the research and the numbers are out: it’s not the prescriptions that are the problem! https://thefederalist.com/2019/03/26/blaming-prescription-pain-pills-opioid-epidemic-fake-news/


Back away from whatever undue influence is being asserted here and do the right thing. Clear these doctors to treat their patients. Clear the pharmacists to do their jobs. Stop harming the innocent https://medium.com/@ThomasKlineMD/opioidcrisis-pain-related-suicides-associated-with-forced-tapers-c68c79ecf84d



Do the right thing,
- Cyrilla
www.CyrillaBaer.com
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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT, which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

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