There’s a fire that flickers beneath my skin,

I burn to touch, and a burn rages within.

A name it took years for the doctors to say, 

Each flare more questions, ongoing treatment delay.

They called it rare, like a secret untold,

Passed down through blood, through family stories of old.

No cure to chase, no finish line near,

Just learning to live with the weight and the fear.

Some days I disappear inside the pain,

The world moves on, I quietly remain.

Tired bones, tired soul, tired leaking eyes,

But I still search for blue in dark stormy skies.

Isolation wraps like a silent shroud,

While others speak laughter, my pain speaks loud.

But in the hush, I’ve learned to focus and hear, 

The peaceful & zen things that draw me near.

A cup of tea to soothe lifted with aching hands,

A soft breeze that cools my swollen glands.

A kind word sent through digital thread,

A scented flower placed beside my bed.

Treatment’s a maze of locks and gates,

Of failed trial lists and then hopeful waits.

But I walk them still, with stubborn grace,

A rare disease warrior in life’s slow race.

There are flares, yes, when I break apart,

But there are also days that heal my heart.

Moments untouched by pain’s cruel hand,

Where I laugh, I love, I take my stand.

So don’t assume this story is only sad, 

There’s more to me than a disease that’s bad.

I’m stitched with strength that won’t unwind,

A guiding, fierce light you’ll always find.

This is the life I did not choose,

But it’s mine to shape, not just to lose.

And though it burns, it also glows 

From the fire inside, my strength arose.