Sunday, 11 June 2017

Misty Rushing, USA. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 11

Misty Rushing, USA.

Patient Profiles DAY 11

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease

Misty Rushing, USA

Name:           Misty Rushing 

Location:       Petaluma, CA USA  

Diagnosis:     

Lyme disease 2009   

Raynaud's and Lupus year 2010    

Limited systemic sclerosis year 2013     

PAH year 2013, ILD and PF year 2015

Age at diagnosis in 2013 = 39    


Where / who diagnosed you?:

Diagnosed by a cardiologist in Santa Rosa, CA USA with PAH.  

Diagnosed with Ssc by a Rheumatologist at Stanford University, Palo Alto, CA.   


What were your presenting symptoms?   

Shortness of breath 

Severe fatigue 

Blue fingers 

Ashy facial appearance. 


Current reality:

In 2009 I was bitten by a tick and developed a red bulls-eye rash 3 days later. I did not have any noticeable signs or symptoms of illness until 9 months later, after having an emotional crisis involving my mother and childhood memories of sexual abuse, that began surfacing at that time. 

I saw a dermatologist in 2010 for what I thought was psoriasis, and who, diagnosed me with photosensitive rashes. I returned to his office and saw a different dermatologist, who took a biopsy of a rash and diagnosed me with lupus. I had all the classic signs of lupus too- sun sensitivity, urine in protein, + ANA, fatigue, rashes, red facial flush (butterfly rash). 

At this time, I was also being treated with doxcycline (an antibiotic) for lyme disease which I had a positive blood test. The antibiotics seemed to work well for the lupus symptoms. 

My lyme doc believed that the lupus was a manifestation of lyme disease. 

I followed a 12 week course of antibiotics and did get noticeably better over the course of 2010-2011. I do recall having the ugliest cuticles in 2011- really bushy with a lot of black specs. 

I showed my doctors my nails and they were puzzled by their appearance.

In 2012 I felt better so I resumed my busy schedule of work and international travel. At the end of 2012, I crashed. I began having symptoms of knee arthritis in May 2012, fatigue and shortness of breath in Sept 2012. 

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. 

I was getting sicker by the week at this point, but ignored it over the winter, staying in bed to rest, as much as possible. 

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. 

The following month I saw a rheumatologist who diagnosed me with SSc from the results of my antibody tests, physical findings and history. 

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. 

I did not start mycophenolate until 2016 after a CT scan indicated ILD and PF. It is worth noting that I have never had a digital ulcer, but in 2016 I started getting calcinosis. 

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 did not start having esophageal issues until 2016 and had an upper EGD and a manometer swallowing test which showed very little esophageal motility. 

I rarely have heartburn or GI issues- knock on wood! 

Today I am much better and I have returned to work part time. My meds are Opsumit 10 mg x 1 once a day, Adcirca 20 mg x 2 once a day , Mycophenolate (1,000 mg 2x a day). I no longer need supplemental oxygen. 

It is worth noting that I have significantly altered my high-stress lifestyle which I believe has dramatically helped me recover. 

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. 

I have tried nearly everything! Even coffee enemas and super intense painful bodywork similar to rolfing. What else? lol.... as you can tell I am pretty adventuresome! 

My full diagnostic reality is that I most likely will die from this disease prematurely but I hope to outlive my prognosis of 5 - 10 years which was given to me by 3 physicians in 2013. I'm at the 1/2 way mark! ;-)  


What are your 3 biggest current challenges due to your diagnosis?    
 
Uncertainty with the disease- I am doing so well right now. 

Will I continue to improve or will I deteriorate again?  

I am receiving residual disability benefits but am concerned that they will eventually force me to return to work full time. 

How do I live with this disease well? i.e. how do I acknowledge it without succumbing to it. I don't want the diagnosis to become my new identity but I also do not want to live in denial. 

How do I find the balance between the two? 


What are your 3 top tips for living with your diagnosis?


Do the Emotional Work. Get to know yourself very well. 

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. 

Maintain an attitude of Gratitude. I remind myself that miracles occur on this planet daily and that the medical statistics do not take into account all the patients that get better. 

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. 

One of my goals of forming the Scleroderma and Functional Medicine group is to find such people and the doctors that treat them and bring them into the spotlight and learn from their successes. 

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. 

Don't be afraid to seek the advice of holistic practitioners. Research the causes of autoimmunity and look deeply at your life and put the pieces together. Take a proactive role in your health.


What are your 3 wishes for the future?

More research dollars toward the causes of scleroderma, not just medications for symptom management.   

Health Insurance companies acknowledgment and proper reimbursement of Functional Medicine.  

A planetary paradigm shift away from a long term sick care system to a system that truly encourages health and well-being from conception until death.  
      


To follow Misty's Facebook Group, Click here



Huge thanks go to Misty for sharing her scleroderma reality and experience for scleroderma awareness month. 

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.   

Thank You Misty!   

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     


June 2016. 

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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, 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      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO


Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018
 

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