-When I was 20 years old
and I first got admitted into the hospital,
I overheard my doctors telling my parents
that I had two months to live.
The average lifespan for someone with Takayasu's
is anywhere from 10 to 15 years.
And I've had it for nine years.
- ♪ Happy birthday...♪
-♪ Birthday to me ♪
-♪...To you ♪
♪ Happy birthday, dear Devri ♪
♪ Happy birthday to you ♪
-Yeah!
♪♪
-All my symptoms started hitting me at once.
I had a fever that wouldn't go down,
I lost my voice, I had really bad night sweats.
One day, I was at the store, and I was reaching the shelf.
Midway while I was reaching, I couldn't see my hand,
and all of a sudden, everything went black.
I finally saw the doctor.
He told me I might have COPD,
which is a chronic breathing disease
that a lot of old men who are smokers have,
and I'm none of those things, so it didn't make sense.
I went to another doctor,
and he told me I just must have heavy periods.
A lot of male doctors have said things
that were very gender-specific.
They think I must not have been that sick
because I had time to do my hair and put my makeup on.
I've been told I'm demanding, I can be a diva.
These words are just associated, I think,
with women who demand certain things.
♪♪
Waking up every morning has been a challenge.
I will mentally wake up and be awake for maybe two hours
before I'm able to actually be mobile.
[ Exhales sharply ]
Whatever we assume an 87-year-old woman feels like,
that's how I feel.
♪♪
Feeling isolated with a chronic illness,
it's a horrible feeling.
There's so little research on what I have.
I don't think there's a cure anytime soon.
This is already what I have,
just in a month and a half, of bills
based on my prescriptions,
my infusion that I get, imaging, CT scans,
because my disease affects my heart, my brain, my eyes.
You can feel like you're drowning in medical bills.
♪♪
One of the first things
that really stuck out to me at 20 years old
was that I'm not able to bear children,
and that's something that I still think about
because I want children so badly.
My legacy now has shifted through my writing
through whatever I create and leave behind.
[ Laughs ]
So, this journal in particular is from 2001.
I remember I used to write a lot of short stories
with female characters
who would be kicking ass, basically.
And I've always kind of envisioned myself
as that person,
and getting diagnosed really put things into perspective.
Like, "Oh, you're gonna fight for your life, literally,
like, the rest of your life, every single day."
♪♪
When I was first diagnosed,
I dealt with a lot of people
who didn't believe that I was really sick,
just based on my appearance, based on my demeanor.
Don't doubt yourself.
If you feel something,
you know better than anyone else knows.
♪♪
I have come to terms with the idea of death.
It's something that we're all gonna be faced with one day,
but because of the disease that I have,
I've had to face it sooner.
My heart beats really irregularly.
That's my literal reminder every second of the day
that I'm still alive.
I don't live around the fear of death anymore.
So, I feel like I'm gonna live a long life.
♪♪