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