medical billS fundraiseR

I'm currently in a flare up of Mast Cell Activation Syndrome, that has brought on multiple issues, including allergic symptoms with all eating. I created this fundraiser to help pay for promising new treatment by a doctor renowned for expertise in complex cases of my chronic illnesses, at his treatment center in a foreign country.

Nothing is covered by insurance, including 4 days of extremely expensive labs, compounded IV treatments, and several trips to the treatment center. 

Platform takes 3.2%, Billed as SJ Coaching

Goal $225,000

1,236

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ABOUT ME

I'm Simone Justice, MA, LMFT, an internationally renowned BDSM educator and former pro dominatrix, based in Fort Worth, Texas.

 

My greatest honor is to be awarded the Sabrina Belladonna Lifetime Achievement Award for my 25+ years of contributions to the BDSM community. I also earned the title of Sublime Lady of OWK and have been named to the BDSM Hall of Fame.

HOW YOU CAN HELP:

  • BID ON MY LATEX CORSET AUCTION - coming soon

  • Link this page in email/TEXT/Social Media:

THANK YOU!

HOW YOUR DONATION WILL BE USED:

  • 3% or more goes to the payment platform.

  • Taxes. All donations count as income, so a big chunk will go to taxes.

  • Everything not covered by insurance: Doctor bills, Medical Tests, Medicine,

       Treatments, etc. Most MCAS, POTS & EDS docs & treatment is not covered.

  • Co-pays for Specialists, Tests, Medicine, Treatment that is covered.

  • Travel to foreign country for specialist doctor appointments at his treatment center, 4 days of testing, and follow up  IV treatments there.

TRANSPARENCY -
CLICK HERE TO SEE ALL MY MEDICAL BILLS

ABOUT MY ILLNESSES

I have 3 inherited & related chronic illnesses:

Mast Cell Activation Syndrome (MCAS),

Postural Orthostatic Tachycardia Syndrome (POTS)

and Ehlers-Danlos Syndrome (EDS), which cause a myriad of symptoms.

 

For the past 12 weeks, I am having allergic symptoms

to all of the 23 foods I can usually eat.

Current symptoms:

  • blurry vision

  • tremors

  • face and palms flushing

  • hives

  • headaches

  • teeth chattering

  • sinus pain

  • memory issues

  • face swelling

  • burning ear canals

  • fatigue

  • nausea

  • sudden coldness with pallor & blue extremities

  • dizziness

  • lips & tongue swelling

  • hoarse, swelling & sore throat

  • motor difficulties

  • brain fog

These are just some of the lighter symptoms during flare ups.

Last time I had symptoms with all eating, I ended up fed by IV, in a wheelchair, and hospitalized many times, for 2 years.

MCAS causes multiple allergy symptoms to almost everything including most foods, strong odors, insect bites, and many medications. Symptoms range from hives to anaphylaxis.

POTS causes fainting from postural changes, very low blood pressure, and dis-regulated autonomic functions.

EDS causes unstable joints, including Cranial Cervical Instability that can result in Cerebrospinal fluid leakage.

 

When I was diagnosed with these illnesses, instantly, all of the unusual and even deathly medical incidents that I've had all my life, were explained.

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ABOUT MY MEDICAL TREATMENT

PRIOR TREATMENT:

For MCAS, which is the most limiting and dangerous of my three chronic illnesses, for the past 8 years, I've been on a protocol of allergy meds plus mast cell stabilizers, as well as a Low Histamine Diet which consists of 23 foods I can eat, that have to be specially prepared. I got diagnosed by a doctor who specialized in MCAS (now retired).  The most important factor is to avoid triggers (many medications, insect bites, strong odors, most food) and mostly stay in my air filtered allergen-free zone at home. Going out or traveling requires a lot of preparation, bringing and cooking my own foods, etc. and is often not worth the risk. Socializing is mostly limited to people who are willing to be as unscented as possible and use fragrance free soap and laundry detergent before they visit me.

This regimen has worked fairly well, but I often get very sick for long periods of time and have to cancel all my plans after some small incident leads to months of illness.  Getting so sick this time from such a small trigger of only a few minutes, when I was feeling great has been a wake up call which has purred me to find a new doctor and treatment program in hopes of reaching more stability.

 

NEW TREATMENT:

I've started treatment with a new MD and Functional Medicine specialist who treats complex cases of MCAS/POTS/EDS. He has a great reputation and has published papers on my illnesses. However, treatment requires traveling to his Treatment Center in another country several times for days of extensive and extremely expensive testing (first round will be $25,931!) and then back again for compounded IV medication treatments. None of the tests, doctor fees, or treatments are covered by insurance.  In addition, he has asked me to see several other specialists including a neurologist, EDS specialist, biological dentist to remove all my metal fillings, their center nutritionist for their recommended diet, and others, most of which will not be covered by insurance either.

So, the good news is there is treatment, bad news is the cost will be astronomical.

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TIMELINE

  • Initial appointments with Specialist Doctor - Done

 

  • Start  "Paleo Autoimmune Low Histamine" Diet - Done

  • Make appointments with other Specialists - In Process

  • January 8th 2023, travel to foreign country for 4 days of testing at treatment center.

  • January 9th, 2023, $25,931 due just for testing.

  • March 2023, get test results & personalized treatment plan.

  • Later, I will return to the Treatment Center for compounded IV treatments, perhaps several times.

  • After I've been on new this treatment program for a substantial time, I'll travel back for more expensive testing to track progress

  • More travel to Treatment Center for compounded IVs.

  • Sometime in 2024? Complete Treatment program!

MY DREAMS

  • I dream of being able to run 4 miles every other day again.

  • I dream of working again as a psychotherapist, helping patients and their loved ones cope with invisible chronic illness, such as MCAS, POTS, EDS and others.

Your donation can help me with a chance to make these dreams come true.

Thank you for your support,

just by reading this, you're increasing awareness about my little-known illnesses, MCAS, POTS & EDS.