Introduction
​Hello everyone! I'm a teenager who has to confront complex medical issues every day of my life. To be completely candid with you all, I started this blog not because I have pride in my condition and want to share my story, but because I am embarrassed of it. And I know it may seem counterintuitive for someone like me to even start a blog, but I thought it would be necessary for my growth and ability to feel more comfortable with my condition. I hope to finally rip the bandaid off and share my most vulnerable and raw thoughts with you all, and build a community with those who may be facing challenges similar to mine. Often times, I've felt so alone in my condition, and I don't want anyone else to feel that way. I want to be that someone who's there for you and understands.
Because I am still a minor and not completely comfortable with putting myself out there on the internet, I have chosen to remain anonymous so I can go all-in on the details of how my medical condition effects my development into an adult, including how it impacts my relationships, and future aspirations for my life.
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About my condition:
When my mother was pregnant with me sixteen years ago, she went in to her doctor's office for a routine appointment, but ended up having an ultrasound that would forever change her life. She was about four months pregnant and discovered that I had what's called a Sacrococcygeal teratoma (SCT), a rare, congenital tumor that had formed on my tailbone. This tumor obviously posed a terrifying and significant potential threat to the pregnancy, but her doctor's were hopeful that she could deliver me safely, and that the tumor would be benign.
About three months later, my mom found herself having an emergency cesarean section after my tumor had begun to grow out of control. As a premature infant, I went straight from my mom's uterus into an eight-hour long surgery, which was touch and go. On top of all that, my tumor also turned out to be cancerous, and I had to start chemotherapy on what would have been my original due date.
Thankfully I was at a great hospital with doctors who poured their hearts into their careers. These men and women have been like family to me, and have been a bright spot in this whole ordeal.
Now, I wish that I could tell you that after several rounds of chemo and a few more surgeries (orthopedic, intestinal, a liver biopsy) that was all to the story, but sadly, this condition continues to plague me with complications that I need to deal with every single day.
The trauma from my original surgery to remove my tumor has left me with a neurogenic bladder and bowel. This basically means that I cannot pee on my own and have to use catheters every time I need to go. When it became clear that my bladder would likely never be able to hold the amount of urine an adult female tends to produce, it was determined that I would need to get a massive bladder augmentation (won't bore you with the details - this just means my doctors had to make my bladder bigger) so that I could be "socially acceptable." This is a polite way of saying that after my surgery, I wouldn't be peeing myself all the time. I also have colon issues that make my bowels sluggish and make it necessary for me to have a fairly complicated daily regimen that helps me get my waste out in a healthy manner. There may be some TMI going on here, but that's really the point, isn't it? To show how someone who looks "normal" can have a whole secret medical world they're dealing with. One that's invisible to everyone but those closest to me.
In my posts, I will go into depth about these problems and how I plan to deal with them as I embark on my life's journey:)
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