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Jenny Tasker posted an update 6 years, 10 months ago
Today is the 11th International Rare Disease Day, so I am sharing some of my story in hopes of spreading awareness and to ultimately find a cure.
Living with a rare form of Mastocytosis called Mast Cell Activation Disorder, dubbed the ‘Allergic to the World disease’, is a challenging, and ever-changing journey.
It causes my body to produce way too many mast cells. Normally, our mast cells are a great thing. They are there to protect and alert our body to all sorts of dangers, and allergens, and actually work to protect us from said danger. But in a condition like mine, with just too many mast cells, we are in a constant high alert mode, always in what we call a ‘flare’, just beneath the surface. Due to our unpredictable and sensitive ‘alert mode’, almost anything can trigger us and cause us to go into ANA. (Anaphylaxis Shock)
Basically, you never know what you are going to get each day, as the symptoms and effects are always changing, and adapting.
Tricky little cells those.So I spend my days going in and out of flares, alternating good days and bad, waxing and waning just like our Moon.
I remain focused on the blessings in each day, and have faith and trust, that my light will always show me the way.
I am so grateful to be home with my family, and for the days I am able to write, and share some inspiration, laughter, or thought provoking quote.
I am even thankful for those bad days, the ‘resting times’, as they always make me feel lighter and stronger, getting brighter with each flare I overcome. I feel like I’m literally glowing in all of my light, giving me the courage, and strength I need, to continue to persevere, move through, and beyond this recent challenge.I am honored to have shared, a piece of myself with you.
I hope it helps to remind you, to have continued faith, trust and embrace your resilient light. Always remain grateful, even for those struggles, as they will only make you a stronger, brighter, and much wiser person for it.I am closing with a poem I wrote to express how I feel through these flares. Do you ever feel like our ever-changing Moon?
I Feel Like the Moon
I feel like the moon, a sliver of light,
a wink of brightness in the darkness of night.I feel like the moon, as with each passing day,
I get fuller and brighter, lighting my way.I feel like the moon, so full and so bright,
as the world is aglow, with all of my light.I feel like the moon, as my light whisks away,
as the tides rumble through me, and I begin to fade.I feel like the moon, while I rest and I heal,
as my whispering light, reminds me to feel.I feel like the moon, beginning a fresh new glow,
as my strength grows only stronger, when I just let it flow.I feel like the moon, as I boldly shine,
this light that surrounds me, that is completely divine.I feel like the moon, this ever changing ball of light,
just waxing and waning with all of my might.Namaste
Jenny TaskerTo learn more about Mast Cell Disease or to make a donation, please visit:
https://www.mastocytosis.ca/en/
https://rarediseases.org/rare-diseases/mastocytosis/ 0FA5A531-5FE6-4B3C-8D42-B17F3838EB86A28FE9BA-597E-4AB8-9BF8-BC26DBDAFA47C017226F-0D54-4CCE-993A-265C9E020416D196C905-9D5E-4A60-AE82-B44690EE8D0F