Spina Beautiful

katie shivery_spina bifida warrior

Lovelydaydreamer's Story

Indiana

Age: 16-24

A little bit about my journey:

My Diagnosis

Spina Bifida, Fibromyalgia, Chrons, Chronic Migraines, Sinusitis, Hypermobilty, COPD, Depression, and Anxiety

Time to Get Diagnosed

I was born with Spina Bifida and developed other health issues throughout my life.

Year I was Diagnosed

1997

Sending Love to

Dr. Boaz

Hospital I'd Recommend

Riley Hospital for Children

This is my story:

Hi, My name is Katie. I am 23 years old. I was born with undiagnosed Spina Bifida until birth. I was born with a tumor-like mass that was a blessing that covered the hole in my spine. This turned out to be a blessing for many reasons the biggest being that it blocked me from having Mental Delays due to Spinal Fluid Leakage. I was diagnosed with Spina Bifida when I was 3 hours old. Two days later I was transported to Riley Children’s Hospital about 3 hours from our home. I had my first surgery in Feb of 1998. It took 17 hours and my entire pelvis was cut out of me and fused back in after removing spider like leg masses that had wrapped itself around many of my organs, spine, pelvis, and vertebrates. Doctors told my mom the odds of me walking was very slim and my lifespan would be short. They prepared my mother that I probably wouldn’t reach my 20th Birthday. To date I have had over 20 surgeries, 8 on my spine, and another estimated in the near future. I also suffer from many other health issues. Depression, Sleep Apnea, Kidney Disease (I was 9 yrs old when they grew the 1st time), Crohn’s, EDS and a hand full of others. I have been in and out of a wheelchair and or walker my entire life. I took my first independent steps at 9 months old after doctors feared I would never walk at all. The longest I have spent in the hospital at once was 186 days. I don’t let my Spina Bifida or my other health concerns describe who I am. I have competitive danced, competitive swam, worked as a Camp Counselor for others with Special Needs. I also enjoy volunteering at the local nursing home. I have 2 Emotional Support Bunnies that are missing all over their Elders at the nursing home due to the current pandemic. As a family we continue to collect items for elders at the nursing home that are needed, wanted, or just for someone that needs an extra smile during this time. I am taking a little time to focus on my health before returning to college. During this time I spend a lot of my time working on my small scale crafting business. Crafting is very special to the women in our family and I am overwhelmed with the shows of support and encouragement I have received doing so. I joined the Collective a couple of years ago. They have been my strongest support system and I can depend on finding someone to chat with any hour of the day if needed. I am proud to say my little sister and my mother are both also fellow warriors. I think it gives our bond a little bit of a special twist. I have lost count at the friends/family I have made within this organization. I even found after joining the collective a fellow warrior I was talking to lives just a few miles away. I won’t lie, not everything is upbeat and fun and game. I have said good bye to two fellow warrior sisters I miss every day. My life has changed because of the influence the Collective and them have had on my family and I. Without this group I wouldn’t be the confident strong willed young lady I am today. ❤

Let’s play 20 questions:

The song that keeps me going is:
You Say by: Lauren Daigle
I never leave home without my:
Chapstick
My go-to feel better movie is: 
Tangled
If I was in the hospital, the celebrity I would most love to visit me would be:
Selena Gomez
When I need to relax, I:
Read or watch Netflix
My favorite food is:
Mac and Cheese
The quote that keeps me going is:
Always keep your face towards the sunshine
When I need a laugh, I:
Watch TikTok
Meet my pets (or favorite stuffed animal):
Holland Lops: Harley and Chewie, Beagle/Husky: Baxter Cat: Pepper, and Guiena Pig: Theo,
My hero is:
My Gram
When I’m having a down day I binge watch:
Golden Girls
My favorite book to get lost in is:
Five Feet Apart
I want to be best friends with:
The group from Smosh
The thing I’m most proud of:
My crafting
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The people I’ve met
The most hilarious thing that has happened to me is:
The time I slid on an hanger and landed flat on my back. It was scary, but also funny.
It really means a lot when someone does this:
Checks in to see how I’m doing
My favorite social media account to follow is:
Oneof_thosedays
The advice I would give to myself back at the beginning of this journey would be:
Keep fighting, it will get hard at times, but you will meet so many amazing people!
Words of encouragement that I’d give to my fellow warriors are
You are strong, beautiful, and brave!
Follow my journey: https://instagram.com/lovelydaydreamer97?igshid=z9qi9zsxy85w

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