Carli Lyn

a much overdo (at home) nail day 💅🏼

i’m still me.

just with a wheelchair, a color-coded calendar, and enough medical paperwork experience to qualify for an honorary degree… but honestly, i kinda love the paperwork 🙊

people hear my diagnosis and assume it changed everything overnight.

the truth is, some of the biggest changes happened slowly… along the way.

it changed how i plan, how i spend my energy, how i see my body, and how i imagined my future.

but it never changed who i am 🤍

but what do mean i couldn’t get out of bed yesterday??? 🥴 chronic illness is such a ride 😵‍💫

these are the face moisturizers i keep reaching for over and over again. some are splurge-y, some are drugstore, all have survived the “would i actually repurchase this?” test.

what’s your ride-or-die moisturizer? 👀

something i’ve learned over the last 25 years is that acceptance isn’t a finish line.
there are still things that hurt.
there are still moments that frustrate me.
there are still days when i wish my body would cooperate.

i can love my life and still grieve the parts that are hard.
those things aren’t mutually exclusive.

one thing i’ve learned is that grief isn’t always about the diagnosis itself.
sometimes it’s about the life experiences attached to it.
the independence.
the milestones.
the ordinary things that other people do without a second thought.

some losses are loud.
others show up quietly in a thousand little moments over a lifetime.
those are the ones i wanted to talk about today.

my favorite place to be 🫶🏼

iving with a rare disease is funny sometimes because not every diagnosis comes with a clear answer.

some are directly related to fop.
some are related to treatments i’ve tried over the years.
some run in my family.

& some seem to have shown up because my body enjoys keeping things interesting.

after 25 years, i’ve learned that not every symptom fits neatly into a box. sometimes the answer is obvious, & sometimes it’s 🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️

at this point every new symptom becomes a game 

which diagnosis would you like me to talk more about?
👇