Name: Misty Rushing
Raynaud's and Lupus year 2010
Limited systemic sclerosis year 2013
PAH year 2013, ILD and PF year 2015
Ashy facial appearance.
My lyme doc believed that the lupus was a manifestation of lyme disease.
I showed my doctors my nails and they were puzzled by their appearance.
I went to see a lyme specialist (different doc) named Dr. Klinghardt in Nov 2012 and spent a week at his clinic using holistic medicine as an intense treatment for lyme disease.
By February 2013 I knew I had something seriously wrong with me and needed to see a new doctor so I chose a new GP in March 2013 and after my checkup (bloodwork, EKG, physical exam) he referred me immediately to a cardiologist, who diagnosed me with PAH after an echo and heart cath, 2 weeks later.
I was started on Ad Circa and other cardiac medications as well as oxygen and went out on full disability. I slowly began to improve and by 2014 was off of oxygen and on Ad Circa and Opsumit for PAH.
1 on each index finger, one on right elbow, 1 in left knee- very squeaky when I move it, several in my toes and bottom of my foot.
I rarely have heartburn or GI issues- knock on wood!
I prioritize sleep, use an infared sauna, eat healthier, talk to a therapist once a month using Quantum Biofeedback, went to countless workshops on healing my childhood wounds, drank Ayahuasca with the Quero shamans in Peru in 2012, travelled to visit with John of God in Brazil in 2015 and 2016.
I use light therapy to assist with circulation (www.wholehealthlight.com) and had a series of IV Ozone injections and used a vibration plate to stimulate lymphatics.
Will I continue to improve or will I deteriorate again?
Do some intense inner work with a therapist and/or plant medicines.
There is usually an emotional component to autoimmunity.
I invite people to also discover their unique desires and dreams and find a way to achieve them.
Becoming self-aware is vital to recovery, without it is easy to succumb to depression and disability.
There are many cases of people with scleroderma getting well and living normal lives, but we don't hear about them because they aren't in the spotlight.
Perhaps no one is "cured" but what if they live normal or near normal lives with little disability? I want to hear from those people. I know they are out there.
To follow Misty's Facebook Group, Click here
And, immense gratitude to her, for her amazing trailblazing approach which she gives to her diagnoses, and for all of her educational information on this.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice