Shaping Tough Times and Becoming a Happy Human
[Music]
[Music]
we’re all met with a different mountain
to climb in life
whether it’s with relationships
friendships within ourselves or
worldwide pandemic
there will always be a challenge in your
way or trying to stop you
ever since i can remember i’ve always
been very outgoing
very positive never went to complain and
i never let anybody tell me what i was
or wasn’t capable of
however one of the greatest mountains in
my life started when i was only 18
months old
my parents realized that something was
wrong when overnight my knees were
swollen to twice the size they used to
be
and trying to move or stand up had their
baby in tears
right away they took me to doctors and
after a long road
with some bumps and some testing i was
diagnosed with a rare autoimmune
disorder called buchette’s disease
bachet’s is an inflammatory disorder
that affects the blood vessels
throughout the body
can cause variety of inflammation or
symptoms basically anywhere the blood
flows
so the fighter inside us all that’s
meant to fight off coughs colds
or rapidly spreading coronavirus instead
it fought my own body
causing chronic juvenile arthritis in my
ankles knees wrists and elbows
ever since then i’ve been learning more
about my body and my condition
how it affects so many other people and
a world of things
i didn’t think would come with just one
disorder
not long following my diagnosis i began
seeing a team of amazing specialists
nurses doctors and therapists at
children’s hospital
at this time i started physical therapy
and that is one of the first times i
remember learning that arthritis
actually stops the mobility in your
joints and can make it very painful if
you push past those limits
at three years old i started dancing i
was in ballet and tap classes that i
loved
and went on to try hip-hop and jazz
dance was a great place for me to meet
people and be active but it was hard
it made a lot of my symptoms worse and
caused a lot more pain
slowly i stopped dancing entirely for a
really long time
but i had to learn at a young age not to
exhaust myself trying to push my limits
i started kindergarten and i already
understood my differences
when i was young and life was simple it
was much easier to accept but the older
i got the more i lost that acceptance of
myself
adaptations and modifications are a very
important life
part of life more so now than ever
growing up for me learning to adapt in
everyday
movements and activities became one of
my greatest skills one year at my school
one of our teachers was doing gymnastics
and i was so excited to join
this group was something i looked up to
for years and i was so ready to change
things and learn so that i could
accomplish a goal
so the 10 year old me took myself to the
meetings and i went to go write my name
on the list
but of course not without saying that i
have juvenile arthritis
and i have to modify the way i do things
people were concerned about me and
wanted to protect me
but i was frustrated i was told that if
i do it the way i do
then i’m going to get hurt even though i
knew my body best and i knew that i have
different strengths
so i went home and explained to my
parents what happened and they stood up
for me
from that point on any teacher activity
or coach that i met
heard a forewarning about me and a small
listen about arthritis from my mom
a very big aspect in my life and anyone
else with chronic illness is treatment
i’ve been on treatments from prescribed
amounts of painkillers
to steroids to medications they use as
chemotherapy
to struggle to find something that stops
your disease from evolving further
helps with the pain that’s already in
your joints and
prevents damage from being done to your
body further
i was started on a biological
immunosuppressant
called infliximab and paired with this
drug came another one
to ensure that my body didn’t build up
antibodies and reject it
i know it’s confusing but it was going
very well for about a year
but four to six months into it i learned
through blood tests that
the paired medication was starting to
damage my liver to the point was miles
above average or healthy
right away i stopped it and only went
for my monthly infusion
this was a normal day i remember waking
up and going to the hospital
i was wanting to get a popsicle or make
my dad stop for ice cream on the way
home
i was hooked up to my machine and when
my nurse started the medication
it was seconds when nothing felt right i
started sobbing and was very nauseous
and i couldn’t breathe properly i
thought i might be choking or about to
vomit or just wake up from a bad
nightmare
she ran out of the room and came back
with pink benadryl
i took it and slowly the symptoms went
away
my throat released and i was able to
breathe normally again
but i stayed the night in the hospital
and later on sent my doctor to learn
that my body
did build up antibodies to my medication
and rejected it in the form of an
anaphylactic reaction
this experience was awful and scarier
than anything i could have imagined or
expected
i wanted to share my story today to help
inspire and connect with people
i want to show people that there’s a
different perspective you can see
or a different way to fight your battle
now i’m on a weekly medication
that i’ve been on for the last four
years and it’s still going well i’ve
played my first practice season of rugby
and met an amazing team of girls
and i hope that once they graduate high
school i’ll go into sciences and move on
to medical career
so much of my life leads back to
arthritis
but i wouldn’t change it for anything
i’ve learned too much to let it go at
this point there’s so many great aspects
to it as well
and the way it’s changed my life for the
better an amazing group called the
sunshine
foundation gives kids with a challenging
chronic illness
a day to remember forever i was given
the amazing opportunity
to go to disneyland with my brother and
meet even more amazing people
and of course my childhood favorites
another great group called the arthritis
society and they help put on camps every
year for kids specifically with
rheumatic diseases
at this camp i’ve met so many kids my
age older and younger that all
share the same stupid disease but our
connections exist a lot deeper
i’ve seen so many of them go on to
travel and get married and grow into the
strong beautiful independent people that
we will all become
so a few things i’ve learned so far one
i know my body better than anyone else
better than doctors teachers families
and i will always be my own expert and
two
i can’t educate i will advocate and i
need people to know that i will never
let my disease take over me or stop me
from living life to the absolute fullest
and three some days will be absolutely
amazing
and some days will leave you hanging by
a thread or facing the edge of your
mountain
so leaving this stage i want to ask you
what’s hurting right now
what makes you feel secluded or alone
what can you change or modify to
accomplish a goal
if you don’t know then that’s okay too
so get to know yourself
know your limits and know what you want
we all live such a different life and i
think that’s such a powerful concept
so what’s something that you learned
that you want the world to know
what leaves you facing the edge of your
mountain find a branch
and keep going you’re the only one that
gets to take your path so be the boss of
it thank you