Help Leigh Ann LIVE w/ :RareDisease

In May of 2015 I was notified by Kaiser that a bone marrow biopsy taken in August 2014 was mis-read. The results were reviewed at my request by Marianna Castells, M.D.,P.h.D. and her team at Harvard/Brigam Young Women's Institute in Boston, MA resulting in a definitive diagnosis of Systemic Mastocytosis. This is a rare mast cell and blood disease (a myeloproliferative neoplasm)  affecting less than 150,000 people in the United States.

In that moment I heard a voice inside me say, "Don't worry, you will be okay," as tears streamed softly down my cheeks.

Since this disease is rare it is very hard to diagnose.
I had done research on my symptoms leading to the request for consultation from Dr Castells, one of the few specialists  in the disease. I felt an overwhelming sense of relief from the uncertainty of not "knowing" what was wrong with me while being dismissed by the medical establishment. I felt empowered because now I could begin to work on healing.

In September 2014 my 25 year career in Financial Services ended. I went on medical leave and on December 2015 I was deemed permanently disabled.

Each day I consciously manage a  multitude of sensitivities that "trigger" episodes that render me helpless and on my back and on the floor on many occasion. It is like being allergic to life.

Recurring life-threatening Anaphylaxis, sudden hypotension, head to toe fire-hot flushing, syncope ("fainting"), pre-syncope, throbbing headaches where I could feel and hear my heart beat pounding in my head are some of the debilitating symptoms that visit me. I feel my life force leave with every  "flare up " or episode.

The costs to support and sustain me are exorbitant. There is no pill to "cure" Systemic Mastocytosis and its symptoms require "Aggressive Symptom Management" 24/7.

The months have now become years and I continue to take a proactive role as part of my medical team.  I remain an optimist while embracing and  traveling a road of uncertainty.

I thank you in advance for your contribution toward my healing journey.  
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"Dis-ease" does not define me, although it is a constant companion. Living with this rare, debilitating disease is not easy, yet bountiful blessings have come to me and I am forever changed and grateful.

One of the hardest things I have ever done is share my vulnerability by opening up publically here this way.

It is also one of the most liberating.  In many ways illness set me free.  Today I savor what it means to Be me authentically and without apology.

Systemic Mastocytosis is invasive. But it does not diminish my Light. As it progresses, Life becomes more precious, fragile , uncertain and unpredicatable. In its wake it stripped me of my dignity, identity and femininity.

Then, a strength I never knew I had emerged. A strength that encourages me each day to rise up and show up to greet each moment with Hope and Inspiration!

I know everything is changable, transmutable. I believe in miracles. They are a part of the natural order of things happening all the time, seen and unseen.

I receive each "Love-Lesson" along the Way with Humility, Grace and Gratitude. I have learned that I am not a victim of "any-thing"!

Healing in on-going (for "everyOne" of us). Only it's packaging is unique. My healing journey is yours too, though our paths may appear different, our humanity connects us. (#MyHealingJourneyisUrs2)

Illness brought me back to my core purpose.
I am a writer, poet and singer. These are my Gifts to share with the world. This is what I know for sure.
Creativity heals the heart, soothes the soul; it heals and inspires the physical, mental and subtle energy bodies.

Listening to that still clear voice within guides me with every breath I take. Some days feel like I'm
balancing on a tight rope without a net.
The balance is a delicate one.

Systemic Mastocytosis is my roadmap to inner peace. In it's volatility a connection to the Divine continues to deepen within me. And today, I Am grounded in
my Being.

Thank you in advance for your Love, your Prayers and your Gifts of Financial Support.

I will close with the greatest prayer I know,

THANK YOU.

"If the only prayer you ever said is, thank you, it will be enough."
(Meister Eckhart)

With Grace, Gratitude & Love,
Leigh Ann
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  Visit the  Mastocytosis Society  at:  www.tmsforacure.org for more information.
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Systemic Mastocytosis should not be a best kept secret. It's time to raise awareness and shed Light on it.

I intend to be of service differently now, below are some of my intentions:

-To Humanize  ("put a face") on:
Systemic Mastocytosis
-it's real, often mis-diagnosed  and rarely understood.

-Educate  Medical Care Providers:
-so others may be treated better, not dismissed & get diagnosed faster than I was.

-Be a Voice
-for those who suffer silently from this erratic, life altering, debilitating, disabling  "dis-ease" and others with seemingly invisible disabilities.

-Inspire Others
-through Writing, Singing, Speaking
 
I ask you today to remember that no man or woman is an island, and it sometimes truly does take a villiage.

"It is in giving that we receive."
( St. Francis of Assisi)(Me, Raw and Real, March 2016)

Follow me on Twitter & Instagram:
@LeighSongbyrd