The Long Road

Audrey_qui_MCTD

Audrey Qiu's Story

Florida

Age: 25-36

A little bit about my journey:

My Diagnosis

Mixed Connective Tissue Disease

Time to Get Diagnosed

A year

Year I was Diagnosed

2000

Sending Love to

Dr. Melissa Elder

Hospital I'd Recommend

Shands @ UF

This is my story:

It was Christmas 1999 when I got bitten by a cat, by January 2000, everything started, the joint pains, the persistent fever, and the swollen lymph glands. Orlando has no pediatric rheumatologists so absolutely nobody had the slightest clue what might be happening to me. Finally, the doctors at Nemours sent me to Shands with a ‘if they can’t figure it out, it’s impossible.’ Cue meeting Dr. Suzanne Skoda-Smith who after repeating the same bloodwork for the millionth time declared me to have JRA crossover SLE. Acting as my primary care for about a year, she transferred me into the care of Dr. John Sleasman. Where despite my obvious joint pain and dominant arthritis symptoms decided to put me on methotrexate, a lupus medication that of course is an immunosuppresant. Fast forward to 2002, it’s standardized testing week and I’m having the worst headache of my life. NBD, I suck it up, take them, and on the last day before spring break, go home early because if I don’t take the tests, I don’t pass 5th grade. That night, it gets so bad that I go to the ER. It’s pneumonia, 8 days of antibiotics, rest, and I go home. Two days pass, fever is through the roof and it’s back to the hospital. Thinking the pneumonia never really cleared, they redo chest xrays, I have white spots everywhere on my lungs. Welp, it must be TB…but she’s not coughing and every PPD test is negative…WTH is going on? Nobody knows, I spend the rest of the year in the hospital until they throw their hands up in defeat literally screaming “we give up! WTH is wrong with her?” and I’m officially property of Shands UF. I take a file thicker than my arm with me for them to analyze. Months pass, I receive every imaging test there is, nobody knows. My blood gets sent to Duke, Harvard, Mayo Clinic, and Princeton. They’re all stumped. Finally, last resort, I get a lung biopsy. Three months go by, every professor and doctor has looked at it, nobody knows until one day, a curious grad student has a peek and asks, “Is’t this just [insert very basic bacterial infection]?” Voilà! I start steroid treatment, everything immediately gets better, I FINALLY get to go home after four long months of a wild goose chase. Everything continues getting better and all is well until October 2006 when I’m 13, in 10th grade and taking 9 week exams, it’s another bad headache but I don’t want to mar anything at my new school so I don’t talk, grit my teeth, and just do it. By the night before the last day, I have a stabbing headache, ripping me apart. It’s midnight and I can’t do it, I scream. At urgent care after a CT, it’s a hemorrhage. I’m in the hospital before I know it. Last thing I remember is fighting people who were pinning me down. Two months go by, I wake up from coma right before Halloween wondering if I should be speaking English or Spanish. I’m in the Shands UF PICU until Christmas 2006 before being sent to Brooks Rehab. I FINALLY get to go home in June 2007. I’m now hemiplegic

Let’s play 20 questions:

The song that keeps me going is:
Hi Ya Ya Summer Days By DBSK
I never leave home without my:
Mother
My go-to feel better movie is: 
Me Before You
If I was in the hospital, the celebrity I would most love to visit me would be:
Tom Hiddleston
When I need to relax, I:
Daydream
My favorite food is:
Noodles
The quote that keeps me going is:
Sarcasm -- the body's natural defense against stupid
When I need a laugh, I:
talk to my dad or sister
Meet my pets (or favorite stuffed animal):
Hedgehog plushies named Smitty and Rocky
My hero is:
My mom
When I’m having a down day I binge watch:
Meteor Garden [2016 Netflix Series]
My favorite book to get lost in is:
Harry Potter series
I want to be best friends with:
Try Guys
The thing I’m most proud of:
Haven't lost my sense of humor
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The minions *cough* friends I've acquired/made
The most hilarious thing that has happened to me is:
Every medical personnel in Florida is willing to pay me to be rude
It really means a lot when someone does this:
Randomly checks in on me
My favorite social media account to follow is:
The Try Guys
The advice I would give to myself back at the beginning of this journey would be:
Just keep going, it is worth everything
Words of encouragement that I’d give to my fellow warriors are
Don't let the crap in your life cover up who you really are
Follow my journey:

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