22 September 2003
Pachyonychia Congenita? (PC) Thirty-five years it’s been a part of my life and I can still barely spell it! How excited I am about this Pachyonychia Project! This is even more exciting than the introduction of the World Wide Web, when I could connect for the first time with other people who had PC, and realize not only was I not alone, but there were others who knew exactly what an infected nail feels like, or understand the difficulty and pain of walking with blisters on the soles of your feet. Now, here we are, embarking on a project we hope is instrumental in finding THE CURE FOR PC. Even if it takes 20 years, what’s 20 years when generations can be helped?
6 October 2003
Soon after I was born, my parents noticed my nails were different. My parents took me to specialists in Utah, and in California. The diagnosis: Pachyonychia Congenita. Because I am a spontaneous mutation, my parents knew little about what was affecting their little girl. My mom still recalls how painful it was for me to suck because of the Leukoplakia on my tongue. After much crying, a very hungry me would finally give in and suck. Soft bottle nipples helped, as well as plastic bottles to basically squirt the milk into the mouth. As I got older, sucking on bottles wasn’t as painful. Today, my tongue is still white-coated, but pain there is not an issue.
Juan & Beto
1 November 2003
Let me tell you about two good friends named “Juan” and “Beto”. These are the names given to my pair of crutches by a real friend when I was a young girl. For years, that’s what we called them. And like good friends, I’ve not always needed to rely on them, but they’ve been there when I’ve needed to. While attending college, my dermatologist told me about another of his patients with pachyonychia. He told me this patient stayed in her apartment and rarely went anywhere. I didn’t blame her. For many of us, thickened nails are a very secondary problem compared to the sores and blisters on the bottoms of our feet. The first thing I asked him was, “Does she have crutches?” He said, “No.”
One of the greatest gifts my parents ever gave me was a pair of crutches. I was in third grade, I came home from school one day to see them propped against the kitchen counter. Crutches have been a part of who I am ever since. They don’t take the pain away, but they certainly alleviate it. Crutches have allowed me to participate in activities in high school and college, including sports reporting and writing, clubs, orchestra, and leadership positions. Crutches have given me the mobility to serve a mission for my church, travel many places, including parts of Asia and Europe, and hold various kinds of jobs (although I’ve never applied to be a waitress or a mail carrier!)
Today, I am a stay-at-home mom (which is a contradictory term since what mom really stays home?), but that doesn’t mean I’m not using my crutches to run my kids around to the kazillion things we sign our kids up for, serve in community and school activities and run all the errands that need running. I don’t do more than the average person (I probably do less), but, thanks to my crutches, the choice to get left behind is up to me – not my feet! I may not call them “Juan” and “Beto” anymore, but crutches are still this pachyonychia person’s very good friends!
Sore Feet/Painful Feet
30 November 2003
This morning I spent about an hour and a half standing and walking. I made a conscious choice to spend my morning this way. As president of a children’s organization at my Church, my desire is to be moving among the more than100 children in my care. For me, life with pachyonychia means choices. Even with the mobility of crutches, I must choose which things are worth wasting my feet on. Pain pills can mask the hurt to a degree for a time, but the damage done while standing or walking will be there once the medicine wears off. As a result of my choice this morning, now I feel sharp pain in my feet that radiates as an ache up my legs. This hurt will last for the rest of the day. Tonight, I will probably have a hard time falling asleep because of the pain. I’ll most likely read until I’m too tired to care about what my feet feel like. In the morning, my feet will still hurt, but the pain will be different. Then my feet will feel “raw.” However, by one or two in the afternoon, if I stay off my feet, the intense pain will subside and I’ll have my regular sore feet back. If you have PC, do you make choices about sore feet/painful feet in order to accomplish the things important to you?
10 December 2003
Here in the USA, the Christmas season is in full-force. This means that more than ever, I need to balance my walking time with my non-walking time. I know my feet are good for about two hour’s worth of shopping or errand running with crutches (with the painful aftermath, of course.) With a wheelchair I last longer. Whether or not I take the wheelchair depends on the situation. If it’s one long trip to the mall, I take it. If it’s lots of little errands, it’s easier to use crutches, especially if I’m alone.
But, even time sitting needs to be balanced. An interesting thing that happens when I sit in the wheelchair, or when I sit anywhere for that matter, is after two or three hours, my feet start to ‘buzz’ I get a weird feeling in the sores and blisters and my feet get ‘puffy’ – which means extra sore feet. (Although the healing time is shorter than had I walked to make my feet extra sore.) I’ve wondered if others with pachyonychia have this same problem.
It sounds like I should be horizontal all the time, doesn’t it? That’s not really true. It’s all about balance. It’s fine to sit –just not for hours at a time. It’s fine to stand or walk — just for short (and I mean SHORT) periods of time. And there’s always ways to cheat. I may sit up straight for the Christmas concert, but I’ll curl my legs up at the restaurant afterwards. And like right now, as I type, I’m sitting, but my knees are pulled up as high as my chest so my feet are as high as the chair seat. No problem!
PC Project Goals
27 December 2003
My last couple of entries, I feel like I’ve sounded so whiney about having PC! Sure, I would like to have finished my Christmas shopping in one day and had all the gifts delivered the next! I’d love to have feet that don’t hurt all the time. More importantly though, my hope is that anyone who reads this will know that PC is so much more than just ugly nails. Sometimes I think, because this condition isn’t life-threatening, we should be spending our energy on things that are. But, then I realize, that as great as my life is, there really is nothing wrong with wanting to live without pain in my feet. And more so, I’ve got two beautiful boys, and there are others out there with beautiful boys and girls, who don’t want to see their kids have this much pain in their lives every day. So I apologize if I seem a complainer — my life IS good and I am very blessed. My hope is, however, that with this PC Project, our lives — and especially the lives of our children — will be even better with less pain. And, if we can succeedd in a cure for PC the ripple of success will extend to many other types of diseases as well.