Living at Random » Entries tagged with "Neurofibromatosis"
A Big Decision at Fourteen
ch_client = "manojt"; ch_width = 300; ch_height = 250; ch_type = "mpu"; ch_sid = "Chitika Default"; ch_alternate_ad_url = "http://www.theunrealuniverse.com/ads/ads1.php?size=300x250&kwds="; ch_color_site_link = "#164675"; ch_color_title = "#164675"; ch_color_border = "#B0C9EB"; ch_color_text = "#333333"; ch_color_bg = "#FFFFFF"; It was the summer of 1987. My uncle and I were seated in one of the small clinical examination rooms of Shriner’s Hospital for Crippled Children in Los Angeles, CA. It was my second trip to the US. The first was a couple of years ago — when stayed about a year in the US — when the Shriner’s sponsored my trip for the first time. [Although my parents were with me for both trips, my uncle was designated as my official guardian while I am in the US because he was a citizen.] A few pleasantries were exchanged and the doctor asked how I was doing since … Read entire article »
Filed under: Life with NF
What does the future hold?
ch_client = "manojt"; ch_width = 300; ch_height = 250; ch_type = "mpu"; ch_sid = "Chitika Default"; ch_alternate_ad_url = "http://www.theunrealuniverse.com/ads/ads1.php?size=300x250&kwds="; ch_color_site_link = "#164675"; ch_color_title = "#164675"; ch_color_border = "#B0C9EB"; ch_color_text = "#333333"; ch_color_bg = "#FFFFFF"; Growing up as a kid with NF, I’m sure my parents had this nagging question inside their heads at one time or another: “Will he grow up to be normal?” I’m guessing that the ”growing up to be normal” question isn’t really exclusive to parents whose kids have NF, other disabilities or special needs. It’s a question that all parents deal with but the question comes with a bigger question mark for parents of NF children because NF itself is sort of a question mark in the sense that the parents will never know when, how and to what extent NF will manifest itself. My parents never gave a … Read entire article »
Filed under: Life with NF
Dealing with the Pain
ch_client = "manojt"; ch_width = 300; ch_height = 250; ch_type = "mpu"; ch_sid = "Chitika Default"; ch_alternate_ad_url = "http://www.theunrealuniverse.com/ads/ads1.php?size=300x250&kwds="; ch_color_site_link = "#164675"; ch_color_title = "#164675"; ch_color_border = "#B0C9EB"; ch_color_text = "#333333"; ch_color_bg = "#FFFFFF"; I have never been able to remember when I first experienced the pain associated with my NF. Perhaps it was because I always had a high-level of pain tolerance even when I was very little. But as I grew older, my left leg — on which had numerous nerve endings had formed — had become very sensitive to pain. If I accidentally bump my leg against something, it was horrible. The pain would just go up and down my leg. With the amount of nerve tissues on that leg, I was already told by my doctors and my parents at a very young age that eventually, the leg … Read entire article »
Filed under: Life with NF
Center of Attention
Because of neurofibromatosis, my left leg was malformed. It was longer than my right leg and was continuously growing faster. It was one of the first things noticed by my parents before they found out that was related to neurofibromatosis: whenever I walked or ran, there was a good chance that I’d trip over myself. Aside from being longer my left leg was also bigger than the right leg. From what I understand, the surgery I had when I was four explored the possibility of removing the neurofibromas that were in my leg. I guess, unfortunately, the doctors then found it risky to do anything else and so decided to leave the leg as is. At first, I used normal shoes. To compensate for my legs’ difference in length, may dad would … Read entire article »
Filed under: Life with NF
Being Brave at Four
“What is going to happen?” I had wondered to myself. I was 4-years old and I was going to the hospital operating room. They told me that the doctors were going to take a look at something inside my leg. I was trying my best to put my bravest face on. My parents had assured me that I’ll be asleep while the doctors did their work and everything will be alright when I woke up. Dr. Imamura, my Filipino-Japanese pediatrician, came by my hospital bed and gave me a die-cast miniature bus from Matchbox. That took my mind off worrying a bit. Matchboxes were my favorite toys at the time and the bus would be a great addition to my collection. Dr. Imamura smiled at me and told me to be brave like … Read entire article »
Filed under: Life with NF