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Ella Steinbeck

Chronic Illness/Medical Sherpa

Click "contact" for appointments.

I am now offering my experience and "Rolodex" to those who seek it. This is meant to be used as a consultation. This is in NO WAY medical advice. I am NOT a doctor. I am simply someone who has been sick for a VERY long time. Maybe everything that is wrong with me can help you!

I know what it is like to waste valuable time, energy, and finances trying to navigate an overwhelming system to find the right help. I can only offer my experience and contacts. I also have a "gift" for writing pointed letters to those who have denied us access to care or otherwise medically disappointed us- if you need help with that (I'm not a lawyer! BUT sometimes letters need to be written to get our frustration out, be understood, or some other reason...I post many of those letters on Instagram as well).

Appointments are limited because I don't have a lot of energy. I wish I could do more! I apologize.

I do not want money! I ask that you make a donation to a non-profit that benefits those who suffer from Lyme/EDS/chronic pain/chronic illness etc. If you prefer, you can donate to a foundation that helps fight to end child trafficking/exploitation. If you need ideas, I can send a list of appropriate foundations. Your donation receipt will be "proof of payment". A screen shot of payment, or a confirmation email, from your chosen foundation will suffice. I suggest contributing $60 or more per 45 minutes of phone consultation. I can only schedule 45 minutes at a time. I know being sick is expensive and money is tight. Do what is comfortable for you and what you deem "fair" for my time.

I strongly encourage and request that you make time to read my pieces on living with Lyme and Ehlers Danlos. And please also listen to the podcasts I have participated in -BEFORE we meet for an appointment. That way you have a full understanding of what I can offer and my medical history. You can make notes and a list of a questions.

When you contact me for an appointment I will send the links. After you have read/listened we can make a time for me to call you.

My Instagram is full of free information. I am an open book.

Diagnosed:
Classical-Like Type Ehlers-Danlos Syndrome TNXB Gene (hEDS), POTS, Arthritis, Fibromylagia, Lyme Disease, Bartonella, Convergence Insufficiency, Traumatic Brain Injury and 3 Concussions, I've been on Accutane 3 times, CPTSD, Hypervigilence, Anxiety, Panic, Depression, Interstitial Cystitis, Endometriosis, Adenomyosis, Mast Cell Activation Syndrome, Multiple Chemical Sensitivity Disorder, Aniscoria, Chronic Fatigue Syndrome

#mentalhealthawareness #spoonie #invisibledisability

"Nothing changes if NOTHING changes"

Writer, Ex-hairstylist to the 1%, Producer, Advocate, Taught English to Novice Monks in Thailand, Board Member for FRAME Foundation...I've also been known to do a little Life Coaching, Modeling, Acting, and Stand-up Comic-ing in the past.

I believe there should be more humanity in humans.

Living Life On The Couch... If you take chronic illness, mix it with good luck and then some bad luck...you'll get ME!

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Dealing with Ehlers-Danlos…why hyper-mobility isn’t a cool cell phone plan, doing the splits is bad

Ella Steinbeck

May 13, 2020
2 min

Dealing with Ehlers-Danlos…why hyper-mobility isn’t a cool cell phone plan, doing the splits is bad

I started doing stand-up comedy with a writing class because I needed a creative outlet. I took that writing class and did nothing. I...

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