Apparently I pulled an epic brain-fart and missed a day. I don’t know. Anyway, here’s a post to make up for that then. OK found my day 5 one. Nevermind!
This one is a little more personal, so it’ll be read more’d so it doesn’t get long and spam walls. Please go back and read the other day’s posts too.
For the longest time, I had had no idea that I had NF. I was diagnosed when I was very young, so I have no memory of diagnosis. All I do remember was being dragged to and from various doctor’s offices, moreso than my peers. All my friends only had pediatricians. I was seeing an eye doctor, a pediatrician, a neurologist, phelbotomists, MRI/CAT/CT scan technicians…the works. I was in and out of the doctors all the time, and never knew why. In fact, when I found out that my friends weren’t getting scans like I was, I was shocked. I had been under the impression that everyone was just like me.
I never got used to the MRIs or CAT scans or CTs…they were loud and uncomfortable. I always had to drink contrast. The contrast came in two colors—red and white. The red tasted like off cranberry juice, and the white tasted like melted plastic. I’d always get sick afterwards, and vomit.
I recall bursting into tears during a scan, because the noise was giving me a headache, my bladder was about to burst because of all the contrast liquids they’d made me drink, my back was aching, and I was starting to get claustrophobic. All the while, I still had no idea why the hell I was in the machine in the first place.
When I was seven years old, I had major surgery to close up two hernias, and to debulk a large tumor that had been growing on me for god knows how long. I didn’t know about the tumor—all I knew about was the hernias.
One day, I think I was probably 13 or so, while at my pediatrician, he turns to my mother after doing his standard physical, and mentioned the letters “NF”. I looked over at her, and asked “What’s that?”.
That was how I found out.