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NF Warrior: Samantha
Meet our first NF warrior of May, Sam Palumbo.
My name is Samantha and I am twenty-two years old. I currently attend University of Wisconsin Whitewater for English with an emphasis in Professional Writing and Publishing. I am currently in my fourth year with an expected graduation date of May 2018. I have been abroad once and I am considering a program that can take me abroad again. Both programs are three-week travel studies that also earn credit towards my graduation. I was diagnosed with Neurofibromatosis and Scoliosis at a young age.
I believe I was about five or six years old for both. I always forget that I also have an optic glioma in one eye because since I am twenty-two, it is not something that is top priority. Sure, it was top priority when I was younger because my family was told that if the optic glioma were to cause something, it would happen before I turned sixteen and that was with an ophthalmologist. I was also in glasses for most of my life up until this point. My optometrist said I no longer needed glasses, but she still wants me to come in so she can keep an eye on the optic glioma because of freckling that she noticed changed between two eye appointments.
I have had six scoliosis surgeries which two were fusions. During that time, I spent six years total in a back brace known as a turtle shell brace or a Boston Brace. But through my middle school career, it got the nickname of body armor because I was in middle school when the paper mosquitoes were popular. One of my close friends wanted to see if I could feel it and shot one at my brace. I never felt the impact, but the brace vibrated from the it.
That was how the body armor nickname started. I don’t remember much from my first surgery or fusion since I was six years old, but I do remember my sense of balance was off once the doctors let me get out of bed and that was the main thing I had to practice. The other five surgeries were not as long of stays or in bed, so that experience never happened again. Even my final fusion at fourteen was only a six day stay.
The other four surgeries were lengthening surgeries. They were short hospital stays since they got me up and walking within a short amount of time. My doctor had originally planned for me to have lengthening surgeries through my teen years and do the fusion closer to my eighteenth birthday, but my growth wasn’t enough to warrant that number of surgeries and he didn’t want to put my body through that if there wasn’t going to be a big enough benefit. That moved the fusion to me being fourteen and left the number of lengthening surgeries to four.
Now at twenty-two, there are only reminders of my journey with NF. For example, during the winter months or stormy weather my back will tighten and I need to be careful with the amount of weight on my back (not that I necessarily am all of the time). I still have fibromas and am finding more café ole spots, but was told when younger that is normal as I age. Walking around campus (albeit one of the smaller campuses) took some getting used to, but is still something that can be done. I get joint pain on occasion and everyone freaks out because I put on a brace on that joint for during the day and go about my normal routine. Everyone is also always asking me why I am in class when they can tell I am tight or am in pain. I always respond with the “I already took pain reliever and am fine” or “it isn’t too bad and I don’t was to miss class”.
I never stay back for joint pain because for me movement helps. My back is the only thing that will get me to stay back from class if I am almost am or actually are crying from pain.