8/13/2017 0 Comments my story..sto-ry {an account of past events in someone's life or in the evolution of something} I wanted to share My story, my medical story. I keep typing this out, deleting, retyping, and deleting again.. I've been thinking about this post for months now, I think about what to type, I think about what I want to share, and what I want people to take away from my story.
I think, and I think, and I think I've just been overthinking the whole thing. That my story should just be shared, plain and simple. But, that's the thing, it's not plain and simple. Preparing to write this, has brought up so many emotions, good and bad. Thinking about everything I've gone through, medically, has been so hard. It is a lot. I've been through a lot. But somehow I'm still here to tell the story.. I'm still here to let people know who I am, and what I've been through... So I guess I'll just start from the beginning.. I was born with Severe Congenital Scoliosis. I had a cute little crooked head, and at 6 months old, my family started to notice that I sat very crooked.. My mom took me in to see a pediatrician, he recommended that they rush me up to Primary Children's Hospital. After doing scans, they found that I had a severe curve in my Lumbar Spine. Starting at 6 months old I had an X-Ray and an specialist appointment, once a year. I remember being fitted for my first hard shell back brace, I was 2 years old. I went to this specialist every year, from 6 months until I was 12 years old, same specialist, same X-rays.. Every. Year. I remember hating those appointments. Not because of the usual reasons, but in elementary school I wanted the {Perfect Attendance} award, and I knew, I knew, I would never get it, because every year i would go to this appointment.. It sounds silly, but when I was young, it made me so sad that I couldn't be "normal"... I always thought these appointments were ridiculous because, I was convinced there was NOTHING wrong with me.. I remember saying, "so what? my back is a little crooked, it is NOT a big deal." "I don't even need to go to the appointment this time, I'm sure my back hasn't gotten worse." When I was 2 or 3 years old, I got my first hard shell back brace, I remember hating it.. The doctor tried to cheer me up by helping me put stickers on it, and placing hot pink Velcro straps.. My mom was always very good about having me wear it, but still, it didn't touch my curve. But, because I wasn't in pain, they just wanted to watch me with X-Rays until it got worse. The brace didn't change anything because my curve was way too low. My curve started in my sacrum and lumbar spine, then shot up, where I also have a small curvature in my thoracic spine.. I played soccer from 5 years old to 12 years old, I played until I couldn't play anymore, I loved it. I also took dance, I actually would wear my dance clothes underneath my soccer uniform so I could leave my games early to go to dance.. I also loved to ride my bike, play dodge ball, kick ball, and touch football, I loved long hikes and running. It seemed like if I wasn't on the trampoline I was doing something else outside. If I wasn't playing outside, I was playing a dance game on the x-box or running around with my Aunt's dogs.. I loved my life, I was a very happy kid.. When I turned 12, it allll changed.. I can remember the exact day I had my first episode of really bad back pain.. I decided to go on a walk with my "best friend" at the time. We walked from my house to the local High School, which was about 10 miles round trip.. I remember, on the way home, my back started to REALLY hurt, I got home and cried because it was hurting so bad, it was the first time I had ever felt back pain, and it was bad.. After this, everything went down hill, I was taking Advil everyday, I slowly quit everything. First, soccer, then dance, and everything else followed. It was very, very, hard for me to quit the things I loved most.. The pain never went away after that. Literally. When the pain began, we went to see the Pediatric Orthopedic Specialist, who had done my X-Ray appointments every year. He told my mom and I, that my curve had grown, but that he wasn't concerned. He said, if I ever did need surgery, it would be for cosmetic purposes only.. And BOY was he SO wrong!!! I would in fact need surgery, and I would need a lot of it.. After that appointment, we decided to seek help elsewhere. My mom works at our local hospital, she actually worked on the ortho surgery unit, so she knew of a surgeon who actually specialized in Scoliosis. He had an amazing record, he went to school in Wisconsin to specialize in Scoliosis, all of his patients adored him. When he looked at my scans, he immediately knew that he needed to surgically help me. My Lumbar Spine, was rubbing against my Hip Bone, I was walking crooked, I was in so much pain.. My pain started when I was 12, in November 2011 I started seeing this surgeon, In April 2012, I had my very first surgery.. Because my surgeon was an adult doctor he had to go to the hospital board and fight for me, fight for me to get the operation that I so desperately needed, by this time my curve was 90-100* .. Before I was able to have my surgery I had to go through months of physical therapy, and I started taking stronger pain medication, daily. I was having horrible, daily back pain.. I was being checked out of school almost daily, because of pain. When I started this medical journey I was in 7th/8th grade, and my school didn't offer any sort of help or support.. It was basically "good luck, sorry".. I still continued to try to go to school, but, I just kept falling further behind with everything going on, PT, surgery, procedures, and appointments. The school offered an online course, after spending 6hrs+ a day, the school informed me that those credits didn't count, so that's when I was done with them, I had to drop out. I'm now, planning to take my GED. I went through some struggles with all of this, not just medically, but family struggles, school, my mental health.. It was all a mess.. After I had my 1st surgery, my "best friend" since 3rd grade, told me she couldn't hang out with me anymore, that I wasn't "normal" anymore.. She came to see me when I got home from my 1st surgery, and when I had fallen asleep, she didn't want to come back to see me.. When I never got better, we weren't friends anymore.. Our group of friends from school, they didn't want to hang out with me either.. I stopped having friends, I wasn't able to sit through church anymore.. I couldn't do anything. And it sort of broke me, I didn't know how to handle it, I was so young and it was Soo not fair.. No teen should have to live through this sort of pain. I struggled with it for a long time, "why me?", "why can't I be (normal)?", "This is all my fault, I pushed myself too hard." I remember when I first started having pain, when I took that 10 mile walk, I thought that it was my fault, that my walk damaged me.. That I deserved this.. I distinctly remember not wanting to be sad anymore, I was in pain, and I held my head up high for most of the time, but after a few years, I started to get sad and hopeless. Who deserved to live in this much pain? with no doctor in sight to help? My siblings struggled with me getting attention.. Even though it wasn't the kind of attention you would want, they struggled. People were visiting me, grieving for me, praying for me, bringing me gifts, and I never understood why my siblings were jealous. I was going through something impossible for a 12/14 year old, and they were upset I was being given, {get well} gifts. It's not like we were celebrating my birthday everyday of the year, I was in a lot of pain, and going through a lot of surgeries.. I wasn't celebrating, I was in pain.. Most of my gifts? I didn't even use or eat because I was in too much pain after surgery.. If I could trade it all to be able to be pain free, I would in a heart beat. I will never understand the hurtful words they have said to me because of my medical situation, I will never understand how they could think I'm spoiled, I will never understand why they were jealous of the attention I was getting.. But it's not for me to understand I suppose, I was really hurt by them.. When my body was hurting me physically, they were hurting me emotionally, they were hurting my heart, when I needed them the most.. They've told me that they hate me.. This life wasn't something I imagined for myself, these relationships weren't something I ever wanted for me or my siblings.. But, it is, what it is.. I never meant to pull my mom away from them for my surgeries, or so she could rush me to the ER, or so she could lay by me in my bed while I screamed in pain.. I never meant for any of it to happen, it just did.
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AuthorMy name is Madison, I have quite a few rare diseases and chronic illnesses. Archives
July 2019
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