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
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.
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.
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.
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 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.
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 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.
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!
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 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?
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.
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.
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.
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
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.
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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, 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.
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
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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
