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 would have to go. Perhaps when I hit my 18th birthday, they said. I actually looked forward to that day because the leg wasn’t a sight to look at: it was big and bloated, it was growing longer that my right leg, and it was painful.

But I never had to wait until I was 18. When I turned 14, it was discovered that the NF was causing the bones of my leg to slowly disintegrate.  When we looked at the X-ray of my foot, the bone structure was literally gone. The doctors then asked if I was willing to have it cut-off already.  Of course, I said yes. I’ll discuss more of the amputation of my leg in another post.

It’s been 22 years now since I’ve had my left leg cut-off just below the knee. When it was cut off, I was happy. I wouldn’t have to feel that sort of pain again or so my parents and I hoped.

Just five years ago, I noticed a slight pain on my right ring finger when I accidentally jammed it somewhere. I didn’t think too much of it after that. Then, I started noticing how sensitive that finger is compared to my other fingers particularly on the part of the fingernail. There’s no way to deny it, the NF has caused numerous nerves to form on my ring finger.

The good thing is the nerves seem to be concentrated on the fingernail area. Good because I really need my fingers in my line of work. I’m a consultant specializing in software/applications programming,  so I need to be able to type in program codes. My touch typing speed would be greatly affected if I ever decide to cut it off. Besides, I really don’t like the idea of having every painful part of my body removed unless that it has become totally useless.

The only downside is I can unconsciously hit the sensitive part of my finger doing the simplest of things: shifting gears in my car, hitting the bottom of the keyboard, hitting the handle of a coffee mug, getting my wallet out of my pants, hitting the rim of my eye glasses when I take a speck out of my eye, washing my hands… well, you get the idea.

Even things like temperature changes causes it to tingle. One time, I wanted a cold shower. My whole body was enjoying the experience but my ring finger was protesting. It even tried convincing my whole hand and my arm to join the protest action. The same thing happened when I wanted a hot shower.

It just really bothers me when it’s painful, but it doesn’t hinder me from doing anything. Do I think that this is will be the last part of my body to experience pain from NF? I hope so, but even if it isn’t, I won’t focus on that.  I’ve learned to deal with it. My wife has learned to deal with it. When I suddenly close my fist and bite my tongue, she’ll take my hand and slowly stroke my ring finger until it feels better. I’m just so lucky to have a loving and understanding wife who goes through all this with me. My parents are always right there too.