‘My mom noticed a hole above my tailbone she could fit her pinky into. The doctors told her, ‘As long as it’s covered with skin, it’s nothing to worry about.’: Woman with spina bifida and fibromyalgia suffers from ‘back attacks’ and ‘wild symptoms’

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“Albert Einstein once said, ‘There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.’ I don’t know about you, but I choose to believe in the latter. You see, me just being here alive today is a miracle.

During birth, the umbilical cord was wrapped around my neck. My heart rate was at 85 beats per minute and dropping rapidly. In order to save my life, the doctor had to act fast by forcing her hand up into my mom to get her fingers around the umbilical cord and pulling me out, which resulted in breaking my mom’s tailbone. Then like any other mom, she diligently looked over my body and immediately noticed a hole above my tailbone she could fit her pinky into. The doctors checked me out and told her, ‘As long as the hole is covered with skin, it’s nothing to worry about.’

Courtesy of Timberly Fabian

However, at just seven days old, I came down with a temperature of 104 degrees and had to spend two weeks in the hospital. After a spinal tap and many other tests, the doctors never did find out what was wrong with me. I spent the next ten years in and out of the doctor’s office with bladder and kidney infections, constantly complaining of back pain.

Courtesy of Timberly Fabian
Courtesy of Timberly Fabian

Then on my tenth birthday, I woke with a temperature of 105 and had to be rushed to the E.R. (Happy birthday to me!) There, the doctors performed another spinal tap before transferring me to another hospital that was better equipped. After two days at St. Luke’s Hospital, the doctors still couldn’t figure out why my temperature wouldn’t go down from 105 degrees. That morning, a different doctor came into my room and asked my mom if there was anything abnormal about my birth. She told him about the hole above my tailbone. Within 20 minutes I was prepped for an emergency back surgery. It turned out, I was born with spina bifida AND a tumor on my spinal cord. And as I grew so did the tumor. It branched out like a tree with limbs, tightly wrapping around my bladder and kidneys, slowly killing me.

In the end, the surgery saved my life, physically, but in order to do so, the doctor who performed the surgery had to remove several of my vertebrae. I had to lay on my stomach for the following three days and try my best not to move. I remember on the fourth day, at 7 a.m., a physical therapist woke me and told me it was time to walk. At ten years of age, I had no idea of the severity of my situation or what the surgery really did to me. I remember being so shocked, confused and terrified my body forgot how to walk. Like how does that even happen? What was worse was the insurmountable pain and effort it took just to do something as simple as walking. I immediately started screaming out in pain, but the physical therapist essentially had no compassion towards me and forced me to continue to try to walk up the stairs. I remember feeling so defeated because I couldn’t do something that was once so simple for me. The following three weeks, I spent in the hospital learning how to walk and take back control of my bladder.

Courtesy of Timberly Fabian

The doctors told me I’d never be able to play sports, let alone walk normally. Basically, I should just feel grateful to be able to walk at all. I should have been born paralyzed from the waist down at birth. It was a miracle I’ve even walked at all. The next year, I did everything in my power to get back to my normal life. Within a year, I shocked everyone and was running and playing with my siblings. There were times when I would have what we called ‘back attacks,’ when I would get stabbing, burning pain in my lower back. The pain was so severe, a few times I actually blacked out. The worse part was I would lose feeling in my legs and wouldn’t be able to walk. I’m so blessed to say the feeling always eventually came back, but I was always left with a sense of fear and anxiety of, ‘Will the next time be the one where the feeling never comes back?’

Courtesy of Timberly Fabian
Courtesy of Timberly Fabian

I was able to play volleyball, softball, and basketball in the seventh and eighth grades. Then came high school. For the most part, I was able to have a pretty normal freshman year. I still had back attacks, which sometimes happened at school, but most of the time it was met with love and compassion. I won’t lie though, there were a few times my peers treated me like a disease. Literally. One day at school, some people who I thought were my friends saw the scar on my back and asked, ‘What is that?’ I told them I had spina bifida and a tumor had to be removed. They both immediately scooted away from me, put their hand over their mouths, and asked if they could catch what I had. I remember feeling completely devastated and embarrassed. From then on. I tried everything in my power to hide my scar and be as ‘normal’ as possible. That all blew up in my face, though, the next year.

Right before I was about to step on stage for the first choir concert of the year, I felt something snap in my back. I remember screaming in a room full of my peers and going down to the ground. The pain was breathtaking. I knew something was wrong. Something happened. I spent the rest of what should have been my sophomore year in and out of the hospital. Now I was having back attacks all the time. I couldn’t walk and often had little to no feeling in my legs. My mom became my full-time caregiver. It broke my heart seeing the pain on my family’s face as they watched me have back attack after back attack. I felt so worthless, having my younger siblings take care of me. I wanted to be the one taking care of them, not the other way around. After months of no answers from the children’s hospital, I was taken to a different physician who immediately found I had a Pars fracture, which meant it was possible I was going to have to have another back surgery. Eventually, I elected not to have the surgery but entered into intense physical therapy. By then, I had missed so much high school that I had no choice but to get my GED.

I slowly regained my strength and was able to start to live my life again. At 19, I met my husband Conor. I gave birth to our first son, Michael, at 21.

Courtesy of Timberly Fabian

When my son was 18 months old, we began to notice he was starting to fall behind in milestones and by his 2nd birthday, my husband and I knew we needed to seek help for our son. In November 2015, we were told Michael may have autism. (He was later diagnosed with apraxia/dyspraxia and a sensory disorder, but that’s a story for another day.) Also, that same week, my grandma passed away from cancer. My mental and emotional health were at an all-time low. I had no idea how to be a young mom to a special needs child and process my grandma’s death. My family and I moved in with my grandpa, and I started focusing on my health mentally, physically, emotionally, and spiritually. I began losing weight and hitting the gym, which helped me to start feeling better.

Courtesy of Timberly Fabian

I hit a brick wall. I found myself feeling sick and in pain, more and more often. At first, my doctor thought it was just arthritis, but after repeatedly seeing her again and again, she decided to send me to many specialists, where I was diagnosed with fibromyalgia. Within a month of my diagnosis, I had my first pain cycle that lasted three weeks. The oxford dictionary defines pain as ‘physical suffering or discomfort caused by illness or injury.’ I’m obviously no stranger to pain, but this was more than pain. Pain doesn’t even begin to describe what I felt. I had to spend 3 weeks in bed, naked because wearing clothes was too painful. It broke my heart not to be able to even hug my son because it was physically too painful. I felt like I had the worst case of the flu. Every inch of my skin felt like it was constantly on fire. Even the air hurt me. I was continuously nauseous, and I also had an intense migraine. It felt like the hair on my head was burning into my brain, along with other wild symptoms. I’ve never been one to really contemplate suicide, but in those moments, I truly understood why the suicide risk among fibromyalgia patients is ten times that of the general population. Being in pain literally 24 hours a day, 7 days a week changes a person. The physical pain is unbearable, but what it does to you mentally doesn’t even compare. Your mind goes to dark places. Places you never thought it could go. Eventually, the pain cycle ended and I worked on finding ways to help ease the flares. For me, it was changing my diet to a more fibro friendly diet, yoga, meditation, working out, and growing spiritually, which helped me a lot.

Courtesy of Timberly Fabian

A few months later, I became pregnant with our second son, Kayden. After the pregnancy, I found myself flaring constantly. I spent that next year utterly depressed from the pain and just trying to make it through the day. I spent a lot of time in bed due to fatigue, which was unbearable. I felt such shame because I was not able to be the wife and mother I wanted to be. I found myself wishing for death daily, literally praying to God to take my life. I was convinced it would be better for my family if I wasn’t around anymore to be a burden to them. I tried different medications, but they all seemed to make me feel worse. As a last resort, I tried Essential Oils to help me sleep longer than just a few hours a night. At the time, I purchased these oils purely to help me sleep, but little did I know this was the start of something life-changing for my family and myself. I began researching all the different ways oils can help your life and the benefits of living a toxic-free life. That, paired with eating a fibro-friendly diet, saved my life. I now have my quality of life back.

Courtesy of Timberly Fabian

My mental health is the healthiest its ever been. I can be my best self for my loved ones now. There are still hard days. I am a work in progress, but I know I am living a quality life now. And more than that, I get to be an example for my boys. No matter what life throws at you, you don’t give up. Plus, I’ve had the privilege of getting to connect with others on their own fibro journeys.

Courtesy of Timberly Fabian

Because of everything that has happened to me, I have an understanding and compassion I wouldn’t have otherwise. I don’t look at someone’s physical appearance and assume they are ‘normal.’ I know what it’s like to be harshly judged because I look like I should be okay. Everything that has happened to me has made me who I am today, and I am so grateful for all the miracles I get to call mine.

Fibro friends, please know you’re not alone in your pain. It is very real and you are 100 percent validated to feel however you do. You are amazing for waking up every morning and making it through the day. We are strong, amazing warriors! Sending you all my love and positive energy.”

Courtesy of Timberly Fabian

This story was submitted to Love What Matters by Timberly Fabian from Denver, CO. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘We’ll operate to decrease her brain damage. Nevermind. BMI is too high.’ I was too fat to save my baby.’: Mom births baby with ‘severe’ Spina Bifida, says she is ‘not disabled, just does things in her own way’

‘Something is wrong with her brain…’ I was wailing, screaming. ‘What does that mean?!’: Mom births rainbow baby with Spina Bifida after 3 pregnancy losses, ‘She is a twice-born miracle!’

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