Monday, 11 June 2018

Misty Rushing, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Misty Rushing, USA. 
Scleroderma Awareness Month 2018. 
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 2017 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? 
 
Staying consistent with the best diet and lifestyle that is best for my needs.   

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



UPDATE 2018:

I am feeling better than I did in 2017.

I have had a few flares but I recover quickly.

It is also worth noting that the last 3 echos I’ve had in 2017 showed a reversal of PAH.

My cardiologist told me based on that information and how I’m feeling, he could not diagnose me with PAH today.

He agreed to a trial of weaning off of the 2 PAH meds which I did without any problems and I’ve remained off the meds since October 2017.

I am in the process of moving from California to Texas to be closer to family and live in a warmer climate. I am fortunate to have purchased a home which brings me a great deal of stability, further reducing stress and improving my health.

In regards to my online passion, Scleroderma and Functional Medicine, I am in the
process of rebranding. Ssc FNXL will become Scleroderma FM. I’m curating a list of
Functional Medicine practitioners with experience and/or interest in Scleroderma.

This will be released as an ebook for members of Scleroderma FM. The Facebook group Scleroderma and Functional Medicine has over 2,700 members from around the globe! I recently was invited to share my story at the ATS (American Thoracic Society) convention to a large group of Pulmonologists and Cardiologists.

I will be presenting at this year’s Scleroderma Foundation Conference on Functional Medicine in July. I am excited to be invited to speak at various events and foresee more of this in my future.


Current SYMPTOMS:

Raynaud’s Phenomenon.

PAH.

ILD.

PF.

Calcinosis.


Current Medications:

Zero prescription meds, supplements as needed.


RESEARCH 2018

Have you taken part in a research trial?

Yes, Scleroderma Diet Study by Dr. Saketkoo at Tulane University


Did you have to travel far?

No


Would you advise others to take part in research trials?

Yes.

I feel it is important to participate to further research and bring awareness to our cause.

I’d like to see more studies in regards to Functional Medicine and Scleroderma. 


Huge thanks go to Misty for sharing her experience for Scleroderma Awareness Month, and huge thanks for her tireless awareness raising throughout the year. 

 






Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here 
March 2018 Autoimmune Disease Awareness Month, Click here 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

To read my articles:
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   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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: June 2018
 

No comments:

Post a comment