Trust your kids

Isabella_gunderson_CRMO

Isabella Gunderson's Story

Canada

Age: 16-24

A little bit about my journey:

My Diagnosis

CRMO

Time to Get Diagnosed

2 years

Year I was Diagnosed

2010

Sending Love to

Dr. Maddie

Hospital I'd Recommend

Vancouver children’s hospital

This is my story:

I started experiencing bone pain at a pretty young age, I was 3 when I started complaining about it in my left leg, however my parents brushed it off as growing pains. As I got older the pain worsened until we finally went to hospital after hospital for an explanation on why a 6 year old wasn’t able to walk without support. I traveled to hospitals all across Canada, sometimes traveling by plane just to see a specialist because every doctor we went to seemed to lead to a new dead end. After dozens of MRIs and CT scans and blood tests we finally got results two years later, I had been diagnosed with a rare bone disease called CRMO. This condition spreads and I had trouble with school and I had dropped out of dance in order to prevent more pain. I was diagnosed 9 years ago and even now the disease is spreading to new areas and affecting my health terribly. Thankfully with support from a team of specialists and what my parents call, stubbornness, I have gotten back into sports. While my health is too unreliable for me to join a team sport I have taken up Kick boxing in order to stay in shape and get out excess energy. No matter how badly I hurt afterwards I will always go back to it because I love kick boxing so much and I don’t want my diagnoses to take that away. While my health is steadily going downhill instead of the other way around I try my hardest to stay positive and trust that my doctors will do whatever they can to help. I’ve been changing medications for years in search for ones that will lessen the pain to a more tolerable amount to no progress so far. Nonetheless I know that I am very fortunate and strive to do my best no matter what my limitations are.

Let’s play 20 questions:

The song that keeps me going is:
Carry On-Fun
I never leave home without my:
Notebook and pen
My go-to feel better movie is: 
The Princess Bride
If I was in the hospital, the celebrity I would most love to visit me would be:
Georgie Henley
When I need to relax, I:
Write in my journal, practice debate speeches
My favorite food is:
Stew!
The quote that keeps me going is:
You did not wake up today to be mediocre
When I need a laugh, I:
Go to my dog, Freya or watch a comedy
Meet my pets (or favorite stuffed animal):
My golden doodle Freya, who is 6 and my favourite stuffed animal is brown dog who has been around for 20 years
My hero is:
Bethany Hamilton (real) Captain Marvel (fictional)
When I’m having a down day I binge watch:
The Politician
My favorite book to get lost in is:
Sadie-by Courtney Summers
I want to be best friends with:
Kelsey Impicciche
The thing I’m most proud of:
Having the the top English mark in my grade for the past 6 years
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I’ve gotten to expand my interests and obtain new hobbies which have led to speech competitions, International debate competitions, kick boxing championships, and being able to speak with so many others who suffer from chronic pain which gives me a connection to people I’ve never even met
The most hilarious thing that has happened to me is:
I explained my disease to a little girl once and she said “you grow bones like a superhero!” So now I just think of it as a super power whenever I’m feeling too down
It really means a lot when someone does this:
Doesn’t make me feel guilty about not being reliable (being understanding that I have limits, even if I pretend I don’t)
My favorite social media account to follow is:
Australia Zoos Instagram
The advice I would give to myself back at the beginning of this journey would be:
Give yourself permission to take a break!!
Words of encouragement that I’d give to my fellow warriors are
Never feel guilty for something out of your control
Follow my journey:

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