EMERY'S (ELIZABETH'S) ILLNESS FACT SHEET 💾
For any of my new followers or even old friends wondering what the heck is going wrong with me medically, here’s a giant post to fill you in!
My family has problems with genetic coding, the kind that happens during cell reproduction. We have lots of spina bifida, MS and other chronic illnesses related to gene mutations in our family.
I have a one of a kind (as far as I know) genetic mutation that I like to call …
🎉Emery’s 15 year hell, 2.0: progressive update🎉
My mutation affects my lungs ability to regulate growth rates. More simply, my lungs don’t know how, when, where or how much to grow or not grow. They grow an abundance of excess tissue in random spurts, attaching to (and thus attacking) my other organs and muscles, and grabbing on to other parts of my lungs, creating pockets and more recently closing of parts of my lungs all together.
🎀Current Chronic symptoms are: chronic pain, muscle weakness in lower extremities, severely decreased lung function/volume (about left 68% according to recent tests)
🎀leading to: oxygen deprivation and then organ damage and eventually failure due to lack of properly oxygenated blood, occasional inability to move properly, and frequent hospital and clinic visits 😷
Because of the illnesses daily effect on my life, I consider myself a part of the spoonie community. 🐎🐄 I love you all so much, thanks for all the support, even for an invisible illness homie like me 😘
All the medication AND vitamins I’m on (for this and all my other stuff):
Thorne research neurochondia
Vitamin C ***
Double Strength Zinc Picolinate
Vitamin D ***
Polyflora type AB
Chromium Complex ***
Cod Liver Oil
Lithium + Latuda + Ariprazole + Zoloft
I was diagnosed at age 10, after my choir director realized I couldn’t get as much air as the other kids. For more than a year, I was a medical mystery until a doctor took a look at my genomics scan and then made the rash decision to open me up and look inside. I love you Dr. Larson ❤️
SO HERE ARE THE FACTS:
At age 10, I was given 15 years to live.
At age 15, I have 10 productive years left.
In those 10 years, I am not only living with the symptoms of this illness but other chronic illnesses as well: I also have endometriosis (like my lung condition but for reproductive organs), scoliosis and organ displacement, OCD, PTSD, bipolar disorder, and a BPD.
Even so, I have things I want to accomplish, a master bucket list if you will.☺️😚😊😘
Visit: Italy, New York, Prague, (TYC 2k14 y 17)
Go to VidCon
Go to a Ted Talks conference
Get 1000 subscribers on YouTube
Go to a pride parade
Go on a date
Get my degree
(current plan: anthropology (specializing in gender and sexuality studies and minor in psychology)
Go to an apple event
See a concert in Madison Square Garden
Fly 1st class with the bed seats
Stay in the Tacoma Dome hotel special suite
March on Mayday
👯 I AM MORE THAN MY ILLNESS AND MY PROGNOSIS 😺
I am a daughter at times, a sister, a friend, a lover, a substitute mom, a musician, a singer (a singer with a lung condition, wow, but a damn good one) and most of all, I’m a human being with hopes and dreams and feelings.
I love deeply, I live with the time I’m given and want every moment to be as beautiful as can be.
I’ll be doing these every 2 weeks or so :) maybe by the end of the week, I’ll answer some of your questions if you want, like an FAQ. Send me an ask (anon or not) or fan mail or even contact me through the stuff in my bio. 😀 OR come find me if you know me in real life, I’ll answer all of your questions, promise. Just be nice 😇
Lots of Love, ❤️