Jan's Corner

PC Keeps Me Guessing

12 January 2012

After living my whole life with PC, I find my PC still keeps me guessing. Take these past months. It’s been cold here in Utah. Typically my feet love cold weather. They still do. I still don’t turn the car heater on to the foot vents. Too hot for my feet. I’m also still sleeping with my feet out of the covers at night. The best thing I love to do is stick my feet out the back door. It’s very cold outside and that rush of cold air feels great on my feet. The problem is my feet have been incredibly, extra painful these past two months. For the most part, they haven’t been infected. I’ve had a few pus-filled sores, but mostly my feet seem like, well, my feet. So what gives? It isn’t unusual for me to have a bad cycle of pain. So when my feet were really painful in December I didn’t worry too much about it. But now we’re going on another month and no relief in sight.

That’s what I mean by my PC keeps me guessing. I would have thought January would be a month of pain relief. It usually is. Instead, I’m hardly sleeping at night. I’m exhausted most days because my feet wake me up so much at night. I’ll get that deep itch in the calluses that drives me crazy or the feet just plain hurt. It’s also a bit discouraging because I’ve walked on my knees for so many years that now my knees hurt. Often at home it can be a choice – feet or knees. I do have a wheelchair at home but it doesn’t go everywhere or get me everywhere I want to be, even around the house, so I have to choose if I’m going to thrash my feet or my knees.

As is my nature, I try to guess what’s making my feet so bad and for so long. I put my feet out of the covers each night, but invariably while I’m sleeping, they’ll come back under. So am I baking my feet with extra covers? I’ve had a pretty stressful past few months. Could stress affect my feet? What about diet? December was not a banner month in healthy eating for me – partly because of the stress. Could diet make a difference? But I’m eating healthy now and the feet still hurt.

So as cold as it is outside, my feet are still incredibly sore at a time of year when I’d expect them to be a little less painful. Don’t worry – I’m fine. I’m still plugging along like all PCers do and I hope I don’t sound too whiney. I actually feel quite matter of fact about what I’m trying to explain. I do wonder if others have experienced anything similar. Have they found patterns for good and bad PC days, or weeks, or months? I’d love to know. Because yes, after all this time, my PC still has me guessing.

Summertime

27 June 2012

Summertime is here in Utah and with it, the hot, dry weather. As a result, my feet boil often. Why the heat hurts my feet so much, I don’t really know. But it does and summertime can be miserable for me.

As a mom of four kids, in the springtime, I typically start thinking of all the marvelous things I’m going to do with my kids during the summer: field trips, outings to the pool and park, library, nearby museums, picnics in the canyon, and visits to educational or historical places nearby. I always have great plans in the springtime for neat, educational things I want do with my kids during the upcoming summer.

Then, inevitably, the heat of summer comes and with it the pain. I don’t know what it is about my skin, but not only does the heat hurt my feet, but also my face. I’m not sure if that’s PC related or not, but in heat, the skin on my face also boils, causing little blisters and bumps. Yes, I’m a real beauty in the summer with all those bumps on my face. This happens regardless of whether or not I’m in sun or shade. It’s all about the heat. And so my face, and especially my feet hurt in the summer. (My feet hurt more since I don’t walk on my face!) Pain is as mental as it is physical for me, and so when that pain and heat hit, all my best-laid summer plans to be mom-of-the-year tend to go by the wayside. I see all these moms taking walks with their kids and doing other fun activities and projects, even going to the malls together. But who wants to do any of that when every step hurts so much?

So what do I do? Because I now know myself well enough, in the spring, when I’m still feeling ambitious and the weather is still cool, I sign up my kids up for lots of summer activities. There’s been swimming lessons, tennis, basketball, fencing and horseback riding, plus there are always fun and educational classes for youth offered through community education, the library or the local college. Some of these activities cost money and some are quite cheap, even free. It’s just a matter of finding the activities.

This summer, my two oldest boys, who both have PC, have summer jobs. They are also both taking high school classes, either online or at the nearby college. It’s not them I worry about. They stay busy all on their own. It’s my two youngest children who don’t have PC and who have lots of energy that concern me. I don’t want them to spend the summer watching TV. They do know how to play by themselves and there are play-dates with friends, but that only lasts so long. I wish I were a mom that was excited to take them on fun summer adventures – like I see other moms doing – DURING the summer, not just when I dream big in the springtime. But the pain becomes too much.

So my coping strategy is to sign them up for things. I take them because I’m “forced” to at this point. I’m committed, especially if I’ve paid in advance. It ensures that they have something to do to keep them physically active and engaged. Sometimes I think I’m basically paying someone else to play with my kids. Except they are learning new skills – skills I can’t teach them – and they are exercising and having fun opportunities.

So even though I’d rather stay home in the air-conditioned house and read a book because the thought of putting on shoes is so awful, I spend my summer running my two youngest kids all over the place from one activity to another. I’m always hot and sweaty and my feet are puffy and sore all the time. But I often take a book to read or a project to work on. Most of all, I get to experience the thrill of seeing them learn new things or laugh with fun at something delightful. I’m not playing by their side, but I do get to watch them participate and learn and do something neat. We talk a lot in the car too, and we do have down-time at home as well. It’s not really how I imagine a hands-on mom to be, but it’s my coping strategy. It’s the way that works for me to help my non-PC kids when the pain of summertime makes me want to do nothing at all.

A Tribute

17 December 2012

My Dad recently passed away. This past year, I watched as his health got worse and worse. But his health problems really began 38 years earlier. As a young man, my Dad was healthy and physically active. My mom was pregnant with their 6th child when my Dad went in for a supposedly routine surgery for what was thought to be an ulcer. Seven hours later, my Dad came out of surgery with no stomach and a diagnosis of cancer.

There are no words to convey the courage my Dad exhibited over the years, because from that point on, he lived a lifetime of daily physical pain. Because of polyps, scar tissue built up and all kinds of other complications, including another bout with cancer, Dad had 21 major surgeries. The last surgery was a year ago. After each surgery Dad fought to get better – or at least as better as was possible to have enough health to have a good enough quality of life. This last time, he fought and fought and his body didn’t get better. It was like his body said, “Enough.”

I have had the privilege of watching my Dad display incredible courage throughout his life and especially this past year. He never, ever complained. Even this past year, as my Mom lovingly, tenderly cared for him, my Dad’s concern was always for her. Through all the years of pain and health troubles, my Dad always had time for others – especially his family. Near the end of his life, he reflected that having health problems actually made him spend more time with his family instead of pursuing career opportunities. Yes, he did work after the first cancer. But he worked with pain. There was a time where the job he had when he first got cancer didn’t work out for him anymore. He was too sick. He spent a time not working and became Mr. Mom. Then, he went on to find a whole new career. He had to adapt to this new life of pain. And he succeeded.

One thing I remember in particular is many people with all kinds of problems – physical and otherwise – would come and talk with my Dad. He had a lot of compassion for people and they knew it. His pain made him empathetic to the sufferings of others – even if their hurts weren’t necessarily physical. Even a few weeks before he died, I was with him when a neighbor called. This man was going to have minor surgery the next day and he was nervous. He wanted to come over and talk with my Dad. I was so touched. There was my Dad, literally on his deathbed, and yet he was still helping someone else.

I don’t remember much about my Dad being sick and in pain all those years. I remember him being fun and I remember him being happy. Because of his love for the outdoors, nearly every weekend he took his kids (and other people) fishing, hunting, camping or somewhere in the mountains. He worked with us, played games with us, talked with us. He came to every sports event my brothers played in.

Because of my PC, I didn’t play sports. I didn’t really even like sports. When I was in high school I wrote for the school newspaper. For my very first story, I wrote a feature article about the football team. I guess it was ok because my advisor assigned me to cover the first football game of the season. I didn’t know a thing about football. My Dad sat down with me and together we watched football games, all the while dad explaining things, telling me things like what a 1st and 10 was. I continued writing sports stories into college and Dad was my best supporter. Sitting together with my Dad watching all those football games while he explained them to me is still one of one of my fondest memories of my Dad. And what does this have to do with life with PC? Well, everything. My Dad often told me I was an example to him. The truth is, he was – and still is – the ultimate example to me of how to successfully live a life with pain. Our pain might have been different. But we both had it every day. My Dad showed me through example that pain doesn’t stop a person from living a happy life. Pain doesn’t stop us from spending time with family, working (even if it means different kinds of work) and serving other people.

These last few months, when we all, including my Dad, knew his body just wasn’t going to rally this time, my Dad was asked if he had any regrets, or if there was anyone he needed to talk with or if he had anything left to do. His answer was no. That’s the way he lived his life. When he died, there was no doubt I knew he loved me. He had told me through words and his actions often enough.

My goal is to live life, regardless of my PC or my pain, like my Dad lived his life with his pain – with courage. My Dad was a praying man. I often heard him say in his prayers with us as a family, “Help us have the courage to do the things we know are right.” My dad certainly had the courage, in spite of daily pain, to live his life to the fullest and do the things he knew to be right.

That is how I hope to live – happily and with courage – even with PC pain. I’m not there yet. But I thank my Dad, for leaving me such an incredible legacy as I strive to be like him and live life valiantly.

Getting Old

31 March 2011

A few weeks ago I sat in a high school auditorium with Dave and all my children except Sam, who was up on stage, singing in a choir. As I watched Sam perform and looked over at my children in the seats next to me, I felt a little freaked out. Yes, I’ll use the word “freak”. All of a sudden, my kids seemed to be growing up too quickly.

Sam really just has two more years of high school. Nate has four. For the first time, I really thought about the fact that my kids are going to leave home, maybe sooner than I want them to!

What made me especially thoughtful was watching Sam up there singing. He looked quite dashing in his tux. But I also know he was in pain, standing up there so long. I wondered what the future will hold for him, especially how it relates to his PC. Sam is just 16 and hasn’t shown much interest in dating. Is that because of his PC insecurities or is he just not interested?

I have four brothers who didn’t date much in high school – they just weren’t interested either. They didn’t have PC though and they all went on to marry nice women and have happy lives. So perhaps that’s the same for Sam. I do know that when I was in high school and even into college – where I dated a lot – I still wondered if anyone would want to marry me with my PC. I wonder if Sam ever thinks about that. Or Nate. I guess I’ll just ask them. (In one of those good talking moments I have with my kids, of course. Not just over breakfast.)

Nate is less than two years younger than Sam. Yesterday I watched him play in the Jazz Band. He’s a trumpeter and he stands in the back. If he wanted to he could use a high stool to sit on. But he doesn’t and he won’t. He’s too embarrassed for anyone to know he has PC or that he might need a special accommodation. I sometimes think it’s ridiculous. After all, it’s just a stool. But I’m also not in junior high either. So like Sam in the choir concert, I watched Nate shift around from foot to foot. I knew he was in pain. But he never says a word of complaint.

I wonder how long both boys will be able to get away with it – this standing and extra walking and not wanting others to know and so doing nothing to relieve the pain – even something as simple as sitting when everyone else is standing. They both had to come home after their respective concerts and pop blisters. That’s the thing about PC. You can say you’ll tough it out – and you probably can. But then you have to live with the trauma you cause to your feet. For me, I will blister within just a few hours of walking or standing too much. It also translates to lost sleep and lost production later on. So I’ll always have to weigh that in to my walking choices. My boys do too and as they grow older and have to walk even more, especially when they go to college, they will really have to make good walking choices.

I do know that PC influenced some of my decisions in the teen and young adult years. I wonder how much PC will influence my boys’ choices, especially as they are entering the ages where their choices will have an ever greater affect on their lives.

I have no doubt whatsoever that my boys can and will do fine in life. It’s just lately that I’ve realized their time as kids in my home is quickly closing. I know they have to go through their own set of challenges. As a mom, though, I also want life to be kind to them. I don’t want things to hurt too much. I know that’s not realistic because that’s not, well, life. But I can’t help but still want the very best for my boys – PC and all. In turn, it’s my hope that regardless of their PC, both boys will continue to be the good individuals they are and bless the lives of others.

Springtime 2011

1 May 2011

It seems like I recycle a lot of my thoughts here from season to season, simply because the same things happen with my PC season after season. I’m beginning to see patterns in my PC. Ever since PC Project was formed, I’ve tried to pay more attention to how my PC is affecting me and when.

Springtime is certainly a time for a PC pattern for me. Right now spring is trying to emerge here in beautiful Utah. While most people I know are looking forward to warmer weather, I feel a little trepidation. I, too, look forward to that good earthy smell and jacket-only weather, but I also know what’s in store.

A few weeks ago, the temperature increased by about 20 degrees and suddenly so did the pain in my feet. It’s ok. I expect it. I say to myself, “Here we go again.” Although I admit, when the pain increases each spring, I’m always taken a little by surprise initially. It’s amazing how easy it is for me to accept life in the winter when I might not hurt as much. Even with constant pain while walking, it’s easy to forget that it does get worse.

Perhaps the spring pain is just to prepare me for the summer months ahead when it really gets hot and I will really feet an increase in pain. I guess we can start saving now for that big air-conditioning bill we’ll have this summer! 🙂 And it still won’t stop me from enjoying the tree blossoms and flowers and the warm weather after a cold winter

Vacation Worries

1 July 2011

Dave and I are taking the kids on a family vacation to Washington DC. I toured there once on band/orchestra tour in high school 25 years ago. I remember our bus driver somehow secured a wheelchair for me, which was very nice. But other than that, I can hardly remember a thing about how we got around and how far everything was other than there was a lot of distance to cover.

Dave was in DC once on business and spent a free day there. Dave is a fast walker and in good shape and he said his feet were sore and his legs were tired at the end of the day.

So here we are – a family of six, with three PCers, including me and my two boys. And already I’m getting nervous about this vacation, thinking what in the world are we getting ourselves into?

I’m back to the whole vacation nervousness of going somewhere new, wondering how we’re going to do it with three of us with sore feet. It’s one thing for us to take a vacation in our car where we just drive up to places and don’t have to walk much. But DC seem like it’s a place where we’ll be walking a lot and taking a lot of public transportation. If it were just Dave and I it wouldn’t be an issue because we’d just take my wheelchair and Dave would take care of me.

But this time we’ve got the whole crew – three who hurt to walk and two younger ones, especially our young daughter, who will need to be held onto in the big crowds.

Our kids love history. They love learning. Dave and I decided this was the perfect time, especially for our older boys, to see the nation’s capital. Even when we told the kids we were going, they each had specific places in mind that they already knew about that they wanted to be sure and visit. So we’re doing it.

It’s just one of those things about having PC that adds that little extra stress in my life. Once I’ve been somewhere and done something I don’t worry about it so much. But when my feet are sore and I can’t walk a lot, there’s a kind of vulnerability I feel, going to a new place. Having kids to take care of – especially ones that will also be hurting – just adds to that feeling.

I’m sure it will all be fine. I’m trying to get us prepared. I’ve tried to research as well and it looks like there are lots of hop-on/hop-off buses that just might save our feet. I’m trying to map out where we want to go and when so that we minimize our walking. And we’re taking two manual wheelchairs that we can share between the three of us if we need to.

We’ve just never done a trip of this scope where we need to get a whole bunch of us around in a place where we have to cover large distances. And for those of you know Washington DC, you probably think I’m crazy to even be worrying. But like I said, it’s just one of those things about having PC where the unknown makes it a concern.

I wonder if others with PC ever have concerns like this or if it’s just me – the chronic worrier?

Back to School

14 September 2011

School started a few weeks ago for my kids. Each day I watch as Sam and Nate leave the house walking with their “PC shuffle”. They don’t complain but I know they’re hurting. By the end of the day, when they come home, I see them hurting even more after walking to different classes, work and other activities. Sometimes I see Nate drag himself across the hardwood floor. He doesn’t crawl quite like I do at home. That’s good. I’m only in my 40’s and my knees are a mess. We have office chairs in our kitchen and it’s a veritable race track – or traffic jam – when we’re all home. My heart aches at times for my boys with PC who are getting older and who are now busier with more and more activities that involve walking – which translates into more pain.

My third son, Spencer, who does not have PC, just started his first year in junior high, thus his first year of walking to 7 different classes each school day. At first I had a hard time transitioning my mothering thoughts to having a child who walks pain-free. First, I caught myself worrying whether or not the carpool Spencer is in was dropping him at the door closest to his first class. Then, I caught myself worrying about how much he was going to have to walk to get to the car after school. Each time I had to stop and remember, “Oh, it doesn’t matter – he doesn’t have sore feet.” In fact, once I caught myself, I thought, “Great – walking a bit more will be good exercise.”

I found myself doing that several times the first week of school for a whole number of activities Spencer is involved in. Both Spencer and Nate are involved in band. Because of that, band kids get their lockers at the far end of the school. It’s really inconvenient and adds a lot of walking. When that happened to Nate a few years ago, we petitioned to get his locker changed. When that happened to Spencer, I had to remember that it is ok.

It’s kind of interesting having a child who doesn’t hurt when he walks. I have to step back and realize that it’s really no big deal for him if he has to walk the length of the school several times over. And if I’m honest, it’s actually a relief. It’s one less thing I worry about for Spencer. As he follows in the footsteps of his older brothers, I realize Spencer is going to make those steps pain-free.

Then I have Rebecca who has boundless energy. She, too, is like Spencer and doesn’t have PC. She runs freely across fields and courts and plays happily and pain-free. It is fun to watch and my heart is happy to see my children who can, run and play till they are completely exhausted and then be able to sleep at night because their feet aren’t keeping them awake.

That said, I don’t want to diminish in any way the great strides Sam and Nate are taking. I don’t ever want to paint a picture of my “poor, hurting children with PC.” To portray them in any way as miserable would be a great disservice to their characters. They hurt, no doubt about it. But Sam and Nate both are highly successful in school and in their activities. If you ask them if they are happy, they will tell you yes. There is too much laughter in their lives for anyone to think otherwise. I am told on a weekly basis from people from all walks of life what outstanding boys Sam and Nate are. I take no credit. I truly believe their PC has made a huge difference in shaping their characters. I believe other people with PC would say the same thing about themselves. It’s important to me to write this because I don’t want anyone with young children with PC to ever think that just because life is painful, it’s not happy.

It’s mostly been a week or two of observation, as a mom, the differences in what I worry about between my kids with PC and my kids without PC. Bottom line, I worry about all four of them for different reasons – because unfortunately I’m a worrier by nature – and I also rejoice in all four of them as well.

It Could Be Worse

11 November 2011

For the longest time, I’ve wanted to a treatment or cure to be found for PC. I’ve especially wanted that for my children – and all the children out there – to be helped, even more so than for me. I still do. However, lately things have happened that have made me realize there are worse things in life than having PC. Everything is relative I suppose, even in the PC family. People who only have PC nails think nails are the worst thing. For those with painful calluses and who struggle with walking, that may be the worst thing and the nails don’t seem so bad. For those with debilitating cysts, or even cysts on their face, that may be the worst thing. And sometimes other things occur in life and all of a sudden maybe those nails aren’t so bad, or maybe those feet or cysts aren’t the worst things a person could be dealing with.

Sometimes hard things happen and I think I’d just like my life to go back to dealing with my PC and no other problems. And always, always, there’s someone who has a problem, whether it be physical, emotional, financial, whatever, that is worse than PC. Of course, that’s also relative too! I love to read. I like to read the words even more than hearing them on a CD. I’ve thought what a gift it is to be able to see. But then maybe a blind person would rather have sore feet. I don’t know. I guess the most important thing is to be thankful for what I have when I have it. It doesn’t mean I don’t be content to NOT try to find a cure or a treatment. That’s not it at all. It just means it’s important to enjoy the now and what I do have because it could be worse. And for sure, someone will always have a problem worse than I do.

Count Your Blessings

1 December 2011

About two weeks before Thanksgiving, our family decided to do individual gratitude journals. Each of us had a paper with a list of the dates for the next two weeks. Then each day we were to write something we were thankful for that day. On Thanksgiving Day, after all the relatives had gone and it was just our own little family again, we shared are journals with one another. That was a special time for me, especially to hear what my kids and my husband were thankful for.

What I found really neat about doing the journal was instead of taking just one day only to count our blessings, by taking 14 days, our entries were full of things we were thankful for, particularly based on what happened on each individual day of those two weeks. For example, during that time, our heater broke on a particular snowy, cold day. We all were really thankful for a repairman with knowledge, for heat, and for money to pay the bill. Dave and I had a special date during that time. We both ended up with similar journal entries commenting about how thankful we were for each other, our marriage and our friendship.

The experience made us realize how much we have to be grateful for, even the little things, in any given day. I found that writing what I was grateful each day was empowering. In fact, it was so empowering I plan to do it regularly. It’s the holiday season now and a time when I often reflect on family and people and things that are most important to me in my life. But doing a gratitude journal has made me realize that each and every day is a blessing and it’s the little things that make life grand.

So what does this have to do with my life with PC? Well, everything! My life is so much more than my PC. Sure, PC makes me who I am in so many ways. And I have an incredible life with PC, because of PC and yes, in spite of PC. Sometimes it takes just looking at the blessings of each day to see that.

I also think about the progress of PC Project. There may not be a cure right now. But if I take a look and count the blessings along the way, I can see so much progress, even little – and big – miracles along the way. Not a week goes by without something wonderful happening at PC Project – an important contact is made, a new research discovery is found, a patient’s life is changed. It all amounts to looking at the individual pieces that make up the whole picture. There is much to be thankful for in the daily things that occur in the PC world. I have much to be thankful for in my life. Life is beautiful. It’s not always easy. But it’s certainly extraordinary when I take the time to count my blessings each day.

HAPPY NEW YEAR!

1 January 2010

Happy New Year to my PC friends! Last month during the first Kid’s Webinar, the question was asked, “What is something good about having PC?” One young man answered, “I get to meet other people from all over, like on this webinar.”

I thoroughly agree with that boy’s comment. I too am blessed for having talked either by phone, email, or in person with people from all over the world, from all walks of life. These individuals have truly enriched my life. I’ve learned so much from each person I’ve met.

In addition, my family has been blessed as well, including those who don’t have PC. All my children are growing up knowing other kids and adults with PC. There are numerous admirable PC role models for them. My children are meeting interesting individuals who teach them and inspire them. Dave, my husband, has also has had the opportunity to meet others besides his wife and two kids with PC. He’s met many intriguing people and has certainly enjoyed these associations.

In the end, I think it’s our relationships with others that really count in life. So at this time of the New Year, when I’m reflecting about all the blessings in my life – I count the people I’ve met through PC Project – including doctors and scientists, PC patients and their loved ones – as some of my very best blessings. They have made a difference in my life and I’m so thankful for them. Happy New Year!

A True Love Story for Valentine’s Day

3 February 2010

When I first met my husband Dave, we were both students at Brigham Young University. Because we were in many of the same social and church settings, I had interaction with Dave several times a week for almost two years. We attended numerous activities together and often did things with small groups of friends. Dave would often visit me on campus where I worked at a copy center. He even attended a Sunday school class I taught every week for a year and a half. During that time, we dated occasionally, but never as a serious couple. But we still spent a lot of time together and were friends.

After those two years, I moved to Arizona for 18 months and except for a postcard or two, we really didn’t stay in touch. Then I moved back to Utah. Dave had since graduated from college, but fortunately was still in Utah. Mutual friends put us back in touch. At that point, Dave and I started dating, this time a whole lot more regularly. After a number of months, our relationship began to turn more serious and we were both wondering if we would be spending forever together.

One evening, Dave asked if we could talk about some of the bigger issues that were important to us. We knew a lot about each other from having spent so much time together, but it was good to really talk about our values and make sure we wanted the same things out of life. I remember that fantastic discussion well. It was during that discussion that Dave asked me if I’d mind telling him about my nails and feet. To say I was surprised is putting mildly. After all this time, how could he not know about my skin condition?

I only say all this – not because you want to read about my courtship with Dave – but so you’ll know if I had any doubt that Dave liked me – even loved me – regardless of my PC, I had no doubt at that point.

During that discussion, Dave told me he figured I’d tell him when I was ready. I told him I thought he knew three years before then! It just goes to show that Dave was not interested in me as a PCer – he was interested in me as a person. He knew I walked sometimes with crutches. He didn’t know why, and he wanted to know why, but it wasn’t going to determine whether or not he had a relationship with me.

Since being a part of PC Project, I’ve often heard PCers discuss when to tell someone you are dating or beginning to care for about your PC. It can be hard for us PCers who spend our lives hiding nails and calluses and being misunderstood by people. It’s just like people without PC don’t tell all their problems to someone on the first date. You need them to like you a bit more before you tell them everything. They’ve got to want the package, before they’ll take the packaged deal. Believe me, I understand this issue. What’s more, during my more insecure times of life (teen age years!) I’ve been in my share of trouble because I’ve told potential dates that ended up being real dates some nice little lies about why I had difficulty walking.

It’s is also true that there are those who may not be interested in you – ok, NEVER interested in you – in a romantic way because of your PC. On the other hand, I’ve had guys interested in me that I’ve thought were feeling sorry for me more than feeling interested in me as a person. The last thing I needed in a relationship was someone who wanted to treat me like a charity case. Good grief!

I think what I’m trying to say in this corner is not just that I have a wonderful husband (which I do), but that the people who end up being forever companions or friends with a person with PC are typically exceptional people. I’ve found that to be true laterally as I’ve met people with PC all over the world and more importantly, the people who love them. The spouses, family members and friends of PCers are caring and compassionate. They unconditionally love the person with PC. They don’t ignore the fact that they have PC. In fact, they are selfless, supportive and adaptable. But they certainly haven’t let PC be the deciding factor in their relationship.

I don’t think a person has to be like Dave and wait a long time to ask a person with PC about their skin condition. Dave obviously dated me knowing I had a permanent problem. Nor do I think a person with PC has to wait a long, long time to talk about it. This is only my opinion, but I think if a person with PC is overly worried about being accepted by someone they care about, then perhaps that person isn’t for them.

PC is a part of who we are. Until that cure comes, we can’t escape the fact that we walk with pain. Our feet aren’t too pretty and sometimes our nails aren’t either. There’s nothing wrong with a person dating someone with PC to seriously ask to know facts about PC and to even ask him or herself if this is something he or she could live with in a future spouse. That’s fair and it’s certainly appropriate.

But bottom line, the people who end up in our lives are typically selfless, kind and good. Dave didn’t do it on purpose, but the way it all turned it out left me assured that Dave courted me for me. Just me. That’s what I want for everyone with PC – to have relationships with friends, partners, and spouses who truly love them – just for them. I want them all to have a true love story!

PC Pain

17 March 2010

My feet are really sore right now. I don’t just mean this very minute, but all the time right now. A few days ago my overall pain increased dramatically. I have no infections, extra blistering or other changes to my feet that I can see. I think it’s an interesting thing that all of a sudden I’m waking up in the mornings in pain. Even as I type this I feel quite a bit of pain.

I can’t tell that there has been a significant change in my lifestyle, activity level or diet. I have been getting very little sleep this past week. I’m not eating as well I as should. Because I’m so tired all the time, I’m not exercising every day like I usually do. It’s kind of a vicious cycle. But I don’t know if that is making a difference in my pain. I also don’t know if I’m more tired because of the pain. It certainly wakes me up at nights. Over the next weeks my goal is to sleep more, eat better and exercise more regularly. I’ll see if that helps.

Also, in the past few days the weather temperature has increased 20 to 30 degrees. I’m wondering if that has made the difference.

It’s always somewhat of a mystery to me why my pain gets worse at times. I’m trying to pay attention to external influences so I can adjust accordingly.

It always takes me some time to adjust to increased pain. With PC I always deal with pain, particularly when I stand, walk, or when I’ve been sitting too long. But recently, I’ve had several months now where the pain has only been extra bad when I’ve done extra activities. It’s been a very nice time! But now that the pain has ramped up a bit, it’s a little harder to deal with because the contrast is so great.

Yesterday I needed to go to a store. I would have liked to have lingered and looked around a bit. But because of the pain, I just purchased what I needed and left. Driving home I passed another store I really wanted to look in. But because of the pain in my feet I kept on driving. I’m not fond of pain-imposed choices.

In the meantime, I’m trying to be aware of what might cause extra pain. The mystery of PC pain would be a great one to solve.

Life is Good

28 April 2010

Today as I was driving to the PC Project office, I was overcome with warm, happy feelings. I expressly thought “Life is good.” Today the sun is shining on the snow covered mountains. The air is clear. It’s a beautiful day and I just feel happy. Maybe it’s because last night I got the first night of uninterrupted sleep I’ve had in a long time. (Lately my feet have been waking me up either because they itch or hurt.) But regardless of my night’s sleep, I’ve felt my heart swell because of all the good things in my life.

Last month I wrote about the unexplained increase in pain I’ve been feeling. That hasn’t changed. I wrote how painful feet can prevent me from doing certain things. But yesterday I received an email from one of my fellow PC friends in England. She had read my last month’s Jan’s Corner and told me she keeps her wheelchair in the back of her car. Then if she’s driving along and wants to do something, but her feet are hurting badly, she just whips out her wheelchair. That way she doesn’t have to miss out on opportunities. Her words put a smile on my face. This incredible woman reminded me that that’s what we with PC do. We adapt. My friend isn’t going to be stopped because of her PC. I can’t tell you how happy it made me feel to read her comments. Her pain hasn’t gone away either. She has increased pain at times and like me, is still trying to figure out why. But she’s still going to live a good life. And I’m going to continue living a good life too. We may be a little slower at times, and we may have to grit our teeth a little more, but we keep plowing on.

What’s more, while I’ve been here today at PC Project, I’ve observed a whole slew of things being done on behalf of us with PC. I’ve listened to Mary talk to and help new PCers in Germany and Brazil. I’ve heard her talk on the phone with one of our scientists who is moving so quickly in his collaborations with other scientists it makes my head spin. She’s set up additional projects with other scientists and doctors to further PC research, one of them directly based on data from the PC Research Registry. I’ve also observed preparations for the next International PC Consortium meeting. What’s more, I was privy to hear just a few of the results of the skin delivery meeting held last month at Stanford. That includes numerous scientists who want to collaborate now and the positive feedback they gave because they’ve never been to such a unique meeting where scientists work together for a common goal.

Really, I don’t know how can sum up all that I’ve observed what’s happened here in the office today in just a few hours. How can I not be happy when so much is going on for us PCers? Oh yes, life is good.

Fast, Faster, Fastest

14 May 2010

Right now my life is incredibly busy. It’s all good things. But things that take a lot of time. Or rather, things that take just a little bit of time, but there’s a lot of them. It’s hard not to wonder if I could just walk fast, if I could do so much more. I also have a lot of errands that need running. But I can really only run so many per day. Again, if I could just go faster.

Lately, for our Friday night dates, Dave has been a good sport and has taken me shopping in the wheelchair for our dates. Dave walks fast by nature and it’s awesome to have him push me from place to place. We get in, we get out and we get things done.

I wonder what it would be like to be able to walk quickly all the time? Just think how fast I could move around my home doing chores and housework? Or how fast I could move around the kitchen? Or how fast I could zip in and out of stores and other places? If only I could just walk without a lot of pain. How fast, fast, fast I could go!

Summer 2010

9 September 2010

I’m always amazed at how a simple decision can lead to a series of events that will change your life forever. For example, my first summer after graduating from high school, I was offered and accepted a job at a camp. This led me to make some really neat friends who invited me to be their college roommate. This led me to meet a handsome student who lived in a nearby apartment named David Schwartz. See where this is going?

In time David and I fell in love and married. About 10 years after we were married, my sweet mother-in-law decided to do something about finding a cure or effective treatment for PC – something that would bless the lives of not only me but two of my children who have PC.

As a result of Mary’s compassion and ability, PC Project was founded. Mary’s decision has affected the lives of so many people and in so many ways. Just like me working at a summer camp set off a series of events that lead to my marriage to Dave, my marriage to Dave (and into his family) eventually set off the creation of PC Project which has since set off a whole other series of events. It kind of astounds me when I think about it all.

One of those “shoot off” series of events was in 2006, when a person from the UK, who helps orphans in China, contacted PC Project about getting help for a little orphan girl with PC. PC Project wrote a number of emails, sent literature and as much information as possible to this person, who in turn, passed it onto this child’s caretakers in China. But as is sometimes the case with people who initially contact PC Project, because there is no cure, the contact died off.

In what I would call a miracle, there was an email blip that put us back in touch with this volunteer – just in time for the 2008 IPCC meeting in China, where other PCers in China were invited to attend a Patient Support portion of the meeting. It was arranged for this little orphan child to come to these meetings and meet the best doctors and scientists in the world to help her and her caretakers care for her PC.

At this point in her life, this child wasn’t considered adoptable because of her PC. We were able to convince her caretakers to submit her adoption paperwork. We insisted she was indeed “worthy” to be adopted. Her orphanage did submit her paperwork and she was adopted in 2009. I’m summing up quite simply a year’s worth of events from 2008-2009 that changed our lives forever.

I must thank this little girl from China who stole our hearts. Because even though it wasn’t meant to be for her to be our child, she turned Dave’s heart and my heart to other older children in China who needed to be adopted – something I doubt we would have ever done had we not known about this child with PC in China.

We found the child who was to be in our daughter earlier this year. This past June, Dave and I went to China to adopt and to bring home our almost 8 year old daughter, Rebecca Meiping Schwartz. Rebecca has brought an extra abundance of joy into our lives. She is a delight! Rebecca has such a fun personality and a strong personality too. She is a survivor and she is brave. I love viewing life through her eyes as she experiences so many new things. She teaches me something new every day. I cannot imagine my life without her.

And because I know you’ll want to know – no, Rebecca does not have PC. But she sure doesn’t seem to mind that she has a mom and two brothers who do have PC. Like all of you know, you don’t need good feet to freely love another person. Our little girl is certainly loved by us. And we think she loves us right back.

Tonight, as I tucked her in bed, Rebecca sang with me a sweet song that she loves about families. (In fact, she likes to sing it with me or the family several times each day.) She especially loves to sing loudly and emphatically the part at the end that says, “A family is forever!” It warms my heart every time I hear her sing it. After the song, I kissed her forehead and told her goodnight. And as I crawled away from her bed, she told me, in Chinese, “I love you.” And of course, I told her “I love you” right back, just like I do many times every single day.

So if you’ve wondered where I’ve been all summer – well, I’ve been on “maternity leave”. My life in the past three months has been completely focused on bonding with this sweet child and helping her adjust and feel comfortable and loved in her new family and in her new life. That focus has also included the new dynamics of three older brothers who love, tease and adore her – and whom she loves, teases and adores right back.

This is a PC story because who would have ever dreamed that it was Mary’s creation of PC Project that would lead us to adopt a beautiful 7 year old from China? Oh how I love my little girl. I’m so glad I took that summer job nearly 25 years ago that would lead me to Dave!

The Advantage of a Wheelchair

15 November 2010

In the past I’ve talked about some of the advantages of having PC. There have been some perks I never expected. One of the biggest occurred last summer when Dave and I went to China to adopt our 8 year old daughter, Rebecca.

Before meeting Rebecca, Dave and I had been thoroughly educated that this would be a huge life-changing experience for our new daughter. We were told to expect displays of grieving in the form of crying, tantrums, anger, and even wild behavior from our new daughter because of her fear, her losses and her feelings of being out of control. We were told that behavior was normal and in time, with lots of patience, love and parenting skills, it would get better. We were also told that many parents needed to wait for months, maybe even years, for their new children to display physical affection with them.

Dave and I mentally and emotionally prepared for all and any of this. When the time came for us to go to China, another big concern was my feet. I knew it would be hot and humid in China and I worried my feet would be in trouble at a time when I really wanted my feet to be good. I also knew that where we were going in China was not wheelchair accessible at all. Even more importantly, I worried what our daughter would think if her new mom was sometimes in a wheelchair.

We decided to take a light-weight wheelchair anyway. It was the best choice ever! First, it was true – my feet were a mess while we were in China. They blistered terribly in the heat and humidity. I don’t think I would have made it without the wheelchair.

But the best part of all, our daughter Rebecca was, like most kids, perfectly fine and accepting of me popping in and out of a wheelchair as needed. What’s more, at this time of fear and insecurity in her life, she wanted to ride on my lap – everywhere. Whenever I got in the wheelchair, she was immediately on my lap. She rode around like a queen. She rode to breakfast in the hotel on my lap. (It was a big hotel with long hallways!) We went sight-seeing with Rebecca on my lap. We explored back streets and alleyways with Rebecca on my lap.

And just like we’d heard, the city was not wheelchair friendly at all. We went bumpity-bump down all kinds of rough roads in China. This gave me the excuse to put my arms around Rebecca and hold on tight! It also forced her to sometimes put her own little arms around my neck. Sometimes, we had to get in and out of the wheelchair while Dave carried it up and down stairs or escalators. (That’s the beauty of PC – you can walk for a bit if you need to.) And those times getting in and out of the chair gave me opportunities to hold onto Rebecca or lift her up and down.

They also gave Dave a lot of chances to hold Rebecca and lift her up and down. And when I wasn’t in the chair and using my crutches instead, Rebecca would let Dave carry her on his shoulders. So she still got a ride, one way or another. We laughed that our guides rarely saw our daughter walk. But we loved it because these experiences gave Dave and I a chance to touch, hold and comfort our new daughter in a non-threatening way. So many of the things we were told could and would probably happen in those first days and weeks with Rebecca did not happen. Physical affection doesn’t always come easily for some of these kids. It takes time and it takes trust. But Dave and I got it quickly – all because of a wheelchair!

Dave and I now think all adoptive parents of older children (children who are old enough that you wouldn’t typically carry them around) should be able to have a wheelchair so they can have an excuse to touch and hold their new child!

What was a source of worry before we went to get Rebecca turned out to be one of our biggest blessings in the early attachment process with our new daughter. Who would have ever thought a wheelchair could do all that?

Christmas 2010

29 December 2010

At the end of each year and at the beginning of a new one, I’m always a little reflective. As I think about how PC Project has influenced my life, my greatest feeling is that of gratitude. While I have spent less time this past year with PC Project, Mary has continued to work countless hours each week running the charity, helping patients, networking with doctors and coordinating research efforts. Mary never gives up and is always striving forwards and upwards. Research for PC therapeutics is as strong, or stronger, than it’s ever been. While most PCers may not hear on a daily basis what’s happening with the research, trust me – it’s happening. To this day, I still can’t get over the fact that it IS happening.

As I reflect, I particularly think of my two teenage sons who have PC. I still see them come in the door and fall to their knees in pain after too much time on their feet. And yet their outlook about their lives is positive, in spite of their daily struggles with pain. They have a confidence in themselves knowing their PC is simply a little gene mutation. They know who they are, they know what they have and they know they are not alone. They know they are extremely blessed. That knowledge has made a world of difference in their lives.

My boys hope for a pain-free life, but they aren’t planning on it. They work hard in school and other activities in pursuit of future careers and opportunities that won’t be affected by their feet. I owe this positive outlook to PC Project, as well as people with PC they’ve met through patient meetings. These PCers are great role models of people who haven’t let a painful disorder get them down. Don’t get me wrong, my boys still have rough days and still get discouraged from time to time (like we all do!), but what a difference the influence of PC Project and PC people have made in their lives! And of course, they’ve blessed my life too.

It’s been another amazing year. I fully expect 2011 will be no less amazing. And it’s all thanks to Mary, to the researchers, to the doctors, and of course, to my fellow PCers, who make all the difference in the world!

Merry Christmas –and Happy New Year!

Happy New Year 2009!

1 January 2009

Happy New Year! As I’ve thought my hopes for PC Project and PC research in 2009, I’ve found it difficult to know exactly what I hope for. The reason why is because every year previously, the progress made by PC Project and PC research has always exceeded any expectations, any imaginings I might have had. Of course, I hope for all of us with PC to walk pain-free. But I think we know that will take time – there are many different mutations and the whole process to reach an effective therapeutic is complex, costly and time-consuming. Except since PC Project seems to shatter all norms of timetables and progress expected from a charity you never really know what may happen and when. PC Project somehow seems to drive things quite a bit faster than what is typical. PC Project is an incredible blessing for PC patients worldwide.I was looking back on the year 2008 and I realized that almost every aspect of my life was influenced for good by PC Project.

The first five months of 2008, I was involved in the first clinical trial for a siRNA in both skin and in human genetics. The results were impressive and are leading to further studies. During the summer I was able to go with Mary for a short trip to Stanford to check out some of the collaborations being made there. Also during the summer I was involved in the planning and attending of the Scotland patient support meeting. Like all other meetings, I was blessed to be with wonderful PCers who enrich my life. I was also able to meet a number of patients worldwide on the webinars that PC Project introduced this past year. That was lots of fun! Fall time brought me back to spending a little time in the PC Project offices once a week and having some input into research studies. Even a short trip my family took to Southern Utah had me meeting up with one of our scientists who was passing through who wanted to take a look at my feet. It’s like everything I did last year had a touch of PC Project.

In addition, there are personal things that have affected my life and my family that have come about as a result of our involvement with PC Project. I won’t share them on this post at this time, but suffice it to say, they have affected our lives in incredible ways. I think every part of my life has been touched for good this past year by PC project.

So you see, as I look ahead at 2009, I do wonder what will be in store for PC Patients, PC Project and PC research. But because each year, PC Project has blessed me with opportunities and hopes and experiences that I never in my wildest dreams would have even thought about, it’s difficult for me to even guess what a new year will bring. All I know is that once again, and always, I am grateful to those that have made all these opportunities and blessings a reality for me. I may not be cured and walking pain-free quite yet, but the journey I’m taking – and I hope all PC patients are taking the journey with me – is an incredible one. I don’t have to walk pain-free to enjoy all the good things that have come into my life because of PC Project.

Busy, busy, busy.

1 February 2009

The past couple of weeks have been incredibly busy for me. Some things have involved walking, some things sitting. However, whether I walk or sit, the challenge for me is either way, my feet get sore. My body can only handle so much and then it is overwhelmed with fatigue. I don’t know if dealing with pain all the time wears me out faster than a “normal” person or if it is just me. I have to balance activities that involve walking with those that don’t. But even then I still get amazingly tired and weary from pain.

Last week I had something all day, every day, just one thing after another. By the time Thursday came, I was unbelievably exhausted. It’s like my bones hurt because my body was so tired. And naturally, my feet hurt like crazy. So that morning, after Dave went to work and the kids went to school, instead of going to my college class, I went back to bed and slept for an hour or so. Then I exercised, riding my stationary bike where I can pedal using the arches of my feet and not touch a callus. I thought the exercise would help get oxygen to my heart and the circulation going in my feet. I felt much better after the sleep and the exercise. After that I was able to once again handle the onslaught of activities. Right then, I read the email from my teacher telling me not to sluff class – which really made me smile because I knew the self-imposed rest was just what I needed to keep going. My next appointment was at noon that day and I was able to pick myself up and continue for the rest of the day.

What bothers me though is that I did need the rest. I see so many people who just go, go, go and accomplish many things in a day. Why can’t I do that without crashing? I get frustrated that I can’t walk faster. But I also just hate that I wear out. Sometimes after a long day, I get home and just need to lie on my bed with my feet up for 30 minutes in order to deal with the pain before I can even make dinner.

I don’t remember if I felt this way when I was younger. I know when I was a young adult I always went to college full-time and had at least a part-time job, plus other extracurricular activities. But I don’t remember needing a time-out to deal with pain. Maybe I just had down-time because I didn’t have responsibilities for other people like I do now. I was responsible only for myself really. That may make a difference. I do know that my sons with PC, who are 12 and 14 years old, come home from school or activities in pain and sometimes they just need to lie on the coach and read a book before they can tackle chores or homework. It’s like they need to deal mentally as well as physically with pain as well.

Sometimes just a little bit of time helps to let the pain subside and then we can deal with other responsibilities again. Sometimes, a lot more time is needed to deal with the pain and the fatigue that comes with it. No matter what though, it can be discouraging to get tired out so easily with pain. I’m wondering if others with PC deal with this or if it’s just me.

Spring Snow

1 April 2009

Yesterday it snowed here in Utah – a beautiful spring snowfall. The temperature had dropped significantly from what I’d been used to from the past few weeks of warmer spring weather. At some point during the morning, I noticed my feet were cold – even uncomfortably cold. But did I try to warm them up? No way. I let them stay nice and chilly because it meant I would walk a whole lot more and with less pain. I distinctly recall standing on someone’s porch thinking how cold my feet felt and at the same time, how wonderful it felt to stand there without my crutches.

Throughout the winter and whenever the weather is cool I always let my feet stay naturally cold. In the car, I never put the car heater on the foot section. At home, I may wear a sweater, but my feet remain sockless and shoeless. In bed, it is too cold to keep my feet out of the covers all night. Inevitably, during the night, I will at some point pull my feet in under the covers. Then I’ll wake up with hot, painful feet. But this past winter I discovered I can skew the middle blankets so they don’t go clear to the edge of the bed. Then I leave only the top sheet and the top cover closer to the edge. That way I can have all covers on the top part of my body and legs, but only a light covering for my feet. However, with warm weather coming, I will soon have no covers at all near the edge of my bed.

A few years ago, when we needed a new bed, we replaced our queen size mattress with a king size. Except for king size sheets, I never got new bedding. I just kept the queen sized blankets (which we have plenty of) so the bed is always made normal-looking on Dave’s side, but on my side, the blankets never quite reach. It’s perfect for the summertime when I want no covers on my feet and it’s perfect, too, for my little winter and cold weather trick. I may not win any home decorating awards but it works for me.

Like I said, it’s not always the most pleasant of feelings to have cold feet, but when I’m tempted to get them warmer, I weigh the benefits and never feel it is worth it. I’d much rather have feet that can walk or stand more than have even comfortably warm feet.

Empathy

1 May 2009

For the past two weeks, my sons Sam and Nathan have both been in terrible pain – even more so than me. Their calluses on the bottoms of their feet are blistering, cracking and walking is excruciating for them.

As their mom, I understand exactly what they’re feeling. I understand how badly they are hurting. I understand how mentally and physically exhausting it can be for them to deal with this pain.

And yet, knowing all I know about PC, I am still at a loss at how to help them. As their parents, Dave and I provide clean needles for popping their blisters. We encourage them to keep the areas clean to avoid infection. We have them soak their feet with a capful of bleach. We provide Neosporin, the kind with a little numbing agent in it, to apply to their feet, especially the open calluses. When the open areas on their feet seem too raw, sore, mushy, etc. we bandage their feet. We provide petroleum jelly for their calluses to keep them soft enough so they won’t crack. We keep their calluses trimmed so they aren’t too thick or too thin. We bought them quality sandals to keep their feet cool. We gave them wicking socks for padding and to absorb moisture. On occasion, we give them oral pain relievers. But the pain is still there and currently it’s some of the worst they’ve ever experienced.

And yet, pain and all, both Sam and Nate walk out the door each morning to go to school with their “PC walk” – except now it’s more pronounced. More and more people are commenting to me every day about their limps. It is painful to watch them walk. It breaks my heart to see them hurting so much.

I’ve asked each of my boys if they want to use crutches, but both say no. Both boys think their peers won’t understand. Sam will use crutches every now and then as long he thinks he won’t see anyone he knows. Fortunately, here in Utah, school is out for the summer in about three weeks and perhaps then their feet will have time to rest and heal a little bit. They have lots of fun summer activities lined up, but hopefully, they will have enough “down time” to let their feet get better.

All I know is as a mom, I’m trying everything I can, but I still feel helpless to know how to help my boys. I hug them a lot. I tell them I’m sorry they’re hurting. But I also tell them how happy I am that they are my boys and how glad I am for all the good things they do in their lives. It’s important to me that they don’t feel sorry for themselves. I know from experience that just having someone be empathetic really helps in handling the pain. Maybe that’s all I can do for now. I wish it were more.

What They CAN Do

1 June 2009

Last month I talked about my boys, ages 14 and 12, and the incredible pain they have been experiencing. They are still walking with a lot of pain. But so far, their spirits are up. I thought because my Corner sounded so depressing last month, I wanted to comment on the things the boys are able to do.

Here is a list of some activities either Nate or Sam (or both) have recently participated in or will participate in soon:

Camping, fishing, chess club, academic games, debate, band (trumpet), piano lessons, boy scouts, household chores, reading, computer programming, cybercorp, robotics, service projects, sewing, shooting clay pigeons, visiting older, single people, swimming, youth conferences, river rafting, science fairs, musicals, youth leadership meetings, and of course, lots and lots of biking!

I recognize my boys have many opportunities, but you’ll notice many of them are things that are offered free through schooling and the community. It’s just a matter of taking advantage of what is available and what fits their interests.

When Sam was born with PC, my dad, who is an avid fisherman, said he wanted to teach Sam how to fish since you didn’t need good feet to fish. That was the first of many things my kids have been able to do. They are not alone in that there are many kids – and adults – with PC who do a huge variety of things.

Sam’s passion is computer programming. He checks programming books out of the library and practices writing code. He hopes to work in the field of computers someday. For as long as I can remember, Sam has expected to go to college and have a career that doesn’t involve standing or walking. I never told him he needed to find that type of career – he just thinks ahead and knows his feet hurt.

Nate’s interests are different from Sam. Right now he is interested in being an engineer or a lawyer. He, too, knows that he’ll need a career that doesn’t involve a lot of walking. He knows that he can still do something productive even though he has PC. When his feet were extra sore last month, Nate didn’t want to go to piano lessons. He said, “My feet are sore – I can’t go to piano.” And I said with a smile, “Then don’t play the piano with your feet.” He laughed and went to piano lessons.

Because regardless of painful feet, my boys need to know that they must go to school, and they should participate in things that interest them. Most of all, they can use their minds, hearts, personalities and integrity to progress in life – if not their feet. The good news is there are many PCers in this world who are excellent examples of people that have taken advantage of good opportunities and worked hard, in spite of pain, to make their lives meaningful.

So I write this all today to say that yes, life is very difficult with pain – and my boys are certainly learning that – but lest you think it’s an excuse to do nothing with our lives, it is not. We are all trying to be our best. And there are many, many things we can do, as children, and as adults. Thanks to those of you with PC who have inspired me and my boys with the way you live your lives.

The Weather

1 August 2009

It seems like so many of my posts mention the weather. This one is no exception. It’s July and the temperature is reaching 100 degrees most days. My life with PC is absolutely affected by the weather. The pain of heat is different than regular PC pain. Regular PC pain for me is a burning sensation with sharp pains in different areas of my feet. Pain from hot temperatures is like a stifling, suffocating pain. I guess all pain is uncomfortable, but this pain is really uncomfortable. It makes my feet feel like they will combust.

It’s ok though. It is what it is. Mentally, it’s harder to gear up to walk when my feet feel this way. There are things I can do to effectively cope with the heat. For example, I try to get everything done that involves considerable walking in the morning because once the afternoon hits, it will be much harder for me to walk. I save things that involve sitting for the hot afternoons.

Another thing I do to cope with the heat is to exercise early in the morning. All summer long, I’ve been getting up with Dave four times a week and together we ride our bikes for an hour just after sunrise. The sun hasn’t yet come over the mountains, so it’s shady and cool and it’s the time my feet feel the best all day. I still have the lingering effects of summer heat though. Even though the temperatures are lower in the early morning, overall, my feet are still worse than usual. Thus, when I ride, I try to avoid stopping so I don’t have to put my feet down on the ground. I also find I move my feet around the pedals a lot, jockeying for the most comfortable place to put pressure.

Another thing I’ve done to cope with the heat of summer is to plan summer activities in the spring, or while it’s still cooler. In the past, at the beginning of every summer, I’ve always made big plans for what I’ll do with the kids to productively fill their time while they’re out of school. But every year, the heat comes and my feet hurt and many of my best laid plans go by the wayside. So this year, because I know my pattern so well, I signed us up for activities before summer began, before the heat. Now here we are, the heat is on, and as predicted, I don’t feel like doing much. But because I already signed up for things, we are doing them anyway. Just simple things like swimming, camps, day trips, classes, and other activities. And I don’t mind doing them. But it’s a good trick to ensure we don’t totally waste the summer away. Like early morning biking, it’s just another way to beat the heat as we adapt to our lives with PC.

Patient Support Meeting – Sep 2009

1 October 2009

Prepare for Success. That was the theme of the Salt Lake City Patient Support Meeting on September 24-26. All sections of the conference focused on this main theme. We have PC, but we have the tools and the abilities to be successful. There are many things we can do to prepare for success.

About 25 PCers – including me – learned about PC – what it is and why we have it. We learned about living with pain and how to manage our pain. We heard about the research efforts going on around the world. This is always my favorite presentation at every patient meeting. I’m always moved by what is happening in PC research. This time was no different.

We learned about our mutations and how we fit in the scheme of things with other PCers. We learned how we are similar and how we are different. We were able to ask questions to a physician’s panel. We learned how to choose a health care provider and how to enhance the patient/physician relationship.

One of the things I enjoyed the most was hearing about the careers of other PCers. I am fascinated and impressed by the things people with PC have chosen to do with their lives. I was highly motivated by hearing their experiences. An expert who helps people find employment also came and spoke on the value of work and how to find meaningful employment. I hope to help my own children incorporate many of his ideas.

Of course, for me, the highlight of the patient meetings is always meeting others. People come from all places and from all walks of life. I love meeting people with different lifestyles, belief systems and personalities. I find associating with them enriches my own life.

Every time I go to a PSM, I think “This was the best PC patient meeting ever.” This time was no different. I loved the smaller group size. I felt like I got an opportunity to talk with each PCer at some point over the course of the conference.

Before this last meeting, I’ve never given much thought about the name “Patient Support Meeting”. But this time I particularly felt the “support” in the meeting. I love my fellow PCers. I love that they understand me. I love that they don’t judge me. I love that I see PCers whom I’ve met before; they are like long lost friends. I love meeting new PCers and I feel just as connected with them. We will always be connected through the common journey we are making in this life with PC.

The last part of the patient meeting was a dinner where we all received darling cans filled with homemade caramel popcorn and labeled with the phrase, “Yes we can!” Can we understand the whats and whys of PC? Can we be contributing members of our families and of society? Can we find effective treatments for PC? Can we be successful in life as PCers? Yes, yes we can!

Vacation Choices

15 October 2009

This past month our family went on a vacation to upstate New York and Canada. Dave and I decided to take some time out of our regular itinerary to see parts of New York we hadn’t seen before.

Before traveling, we learned of a place called Watkins Glen State Park. The literature said “Watkins Glen takes one into an ethereal world of beauty and mystic including 19 waterfalls”. I really wanted to experience this place. Dave did too. The catch – over 800 stone steps on the mile and a half one-way non-wheelchair accessible trail. Could I do it? Probably. But our vacation was also after the most recent patient meeting and my feet were very sore. More importantly, my two boys’ feet were extremely sore, blistering and weeping. Dave and I decided to wait until we got to New York and talked to people who had been to Watkins Glen before making a decision about going there.

There was another state park in upstate New York on the way to our next destination – Letchworth State Park. It was also supposed to be beautiful, but in a more grand, majestic way. We talked to someone who had been to both parks. Both were supposed to be beautiful, but the person said if we had a hard time walking, Letchworth Park would be the better choice. It was Dave who made the final choice about which place we should experience. He knows his PC family well.

Though Dave has never once complained, I am aware (probably more than Dave is) of things he misses out because he’s married to me. Dave loves nature and beautiful things in the outdoors. Yes, I know there are many things we can experience together without a lot of walking, but still I worry that he doesn’t get to do and see all he could if he had a “walking wife.” That said – if Dave read this, he would roll his eyes. He doesn’t seem to mind nearly as much as I do.

In the end, we loved going to Letchworth Park. We entered the park at a side entrance in order to see the lower waterfalls. We needed to walk an easy trail on soft dirt. It was about a half mile one way and it was worth it. With the fall leaves changing colors, the views were stunning. We felt like we were in another world and because it was raining softly, we were the only ones on the trail.

Once we arrived at a main entrance of Letchworth, however, we got some bad advice at the ranger’s station when entering the park and ended up walking down many flights of stone steps to get to a place where we could see another beautiful waterfall. It was painful and I kept trying to weigh whether or not it was worth it. The funny thing is had we driven down the road just a little bit more, we would have avoided that trail altogether and still had seen the same views. After that, we stuck to driving only to places in the park. I laughed and said we’d probably walked just as much had we gone to Watkins Glen. But it’s so hard to know when you’ve never been somewhere before, even when you do ask people for advice because it’s hard for those who share that advice to really understand what you can and cannot do.

All in all it was a wonderful experience and we saw gorgeous scenes at Letchworth State Park. I was particularly happy Dave enjoyed it so much. In fact, a few times, he went further on down some trails on his own and I was glad. Even though he says he doesn’t mind, I don’t want Dave to miss out on anything. I’d like to think nothing can stop us, even having PC. But the bottom line is weighing in on the pain is a factor every time we make choices on a vacation.

Coping with PC

2 December 2009

Every single person has problems and challenges in their life. Almost daily I work with or talk with people who have problems that I think are worse than mine. These experiences have made me somewhat thoughtful about my own package of problems. People who know me think having sore feet must be terrible and they are grateful they don’t have PC.

However, I find that I’m quite comfortable in dealing with PC. I’m not saying I like walking with pain. It’s just that I know how to manage this particular problem. I know I can live happily in spite of PC. It hasn’t always been this way. But especially now, when I so often see challenges other people deal with, whether they be physical, mental, or emotional problems, I’ve decided I’ll take my own problems, thank you very much.

I think about my sons, Sam and Nate. They have gone through times in their lives where it’s been very discouraging for them to have PC. Sam, who is 14, is currently dealing with three infected toenails. Yellow pus is weeping from the nails and the toes are bright red. It’s not fun for him to walk right now because of those toes – let alone the pain caused by his regular calluses and blisters. (And yes, he is now starting on an antibiotic because the infections are not healing up on by themselves.)

Sam would love to not to be dealing with those infected toenails. But he’s still coping just fine. He’ll certainly have more trials with his feet, but he’s kind of settling into his life with PC. He knows what he has, why he has it and he’s learning how to handle it. I find these kids with PC to be so courageous.

Nate, who just turned 13, went through a time where he was discouraged about the fact that he is often sidelined from sports by the pain in his feet. Yet on Thanksgiving morning, he played in the “turkey bowl” in our neighborhood. For Nate that football game was worth wasting his feet. But I also notice that Nate does a series of exercises at home regularly including push-ups, sit-ups and a ridiculous amount of pull-ups. He’s got the most defined biceps I’ve ever seen on a kid that young and his six-pack is unbelievable.

What I’m saying is even though Nate was sad to give up soccer and other sports because being physically fit is very important to him (and because he enjoyed the sports) he has found his own way to compensate.

Nate still has many friends that play sports. But this year, on his own, he joined the Academic Games team (with Sam) and he also is on the Science Lab team – a group that learns lab experiments and then travels to elementary schools to teach younger children and to get them excited about science. Nate is finding his own niche as is Sam.

My whole point is we all have problems. And while I don’t want to diminish in anyway the struggles we have with PC, we do learn to cope. Like my boys, there will be more hard times with PC, but we all kind of “settle in.” We learn to proactively deal with our lives. We make necessary adjustments. And in the end, sometimes we find we’d rather be dealing with PC than a whole lot of other problems we see others dealing with. And we’re okay.

Holiday Time PC Survival

16 December 2009

“City sidewalks, busy sidewalks, dressed in holiday style” are not always the best thing for someone with painful PC feet, especially when the shopping lines are longer and the crowds are heavier. Thus, the past few years, I have discovered the beauty of online shopping. I am so busy in my ordinary life, along with the extra activities of Christmastime, that to have terrible sore feet from extra walking would probably put me over the edge. I really don’t have time to have more blistering on top of my regular pain.

Fortunately, I can shop from the comfort of my own home computer, take all the time I want to pick and choose, and then always get free shipping and other online deals. I love online shopping. It’s literally saved my feet.

When I do need to run errands that involve a lot of walking, I’ve found that my husband Dave or a good friend is kind enough to take me in the wheelchair. Then we go quickly and efficiently because we can go fast!

In the past, my feet have always hurt a lot more during the holiday season. But now that I’ve set aside my pride and shopped in my wheelchair, and even more so, now that I’ve discovered online shopping, my feet are so much less sore at Christmastime. That way, I can save my feet for the good things – special activities and time with family and friends.

I can enjoy the Christmas season whether or not I have sore feet. My happiness is not dependent upon my pain level. But it sure is nice when my feet don’t hurt too much!

Taking a Break

1 January 2008

We’re giving Janice a break from writing this monthly column. We hope you enjoy these entries from 2004-2007. We may post special submissions from PCers around the world from time to time. If you’d like to submit a column, please send to Jan’sCorner@pachyonychia.org. All entries will be reviewed by committees of the MSAB and PAB before posting.

I’m Back!

1 August 2008

I’m back! Thanks to all of you who have been so understanding (and supportive) while I took a break from Jan’s Corner for all these months.

As many of you know, I’ve been involved with the first siRNA clinical trial for skin in a human being. The clinical trial proved to be more time consuming and more physically and mentally demanding than I’d anticipated. That first month of January, I wrote a Jan’s Corner about shoes. And while shoes are very important to us PCers, my heart wasn’t in it and I never posted it. At that point, the trial was consuming my life and all I could really focus on was what was happening to me. I had plenty of thoughts about the trial that I would have loved to share with you all, but I wasn’t sure what I should or should not say. Needless to say, I took the time off from this Corner simply because every subject to write about besides the trial was far from my mind and heart, and yet I was afraid that what I might write about the trial might either raise false hopes or unduly disappoint when frankly for much of the trial, I really had no idea how it would all turn out.

So with that explanation, let me just say it’s nice to be back in touch. I still am in the actual trial. Although my last injections were in May, I am monitored for what’s called a “wash-out” period. The trial is also still blinded, which means no one, including my doctors, know which foot had the actual siRNA.

However, I personally am 100% sure which foot had the siRNA. Because the trial doesn’t end until August 14, I’ll wait to give all details, but let me tell you this – in my opinion as a patient, the trial was a success. I’m healthy with no known side effects at all. The primary reason for this trial was to prove safety in a human. To my knowledge, that was proven.

Best of all, after three months of gradually increasing the volume and dose concentration in the injections, the targeted callus on one foot not only thinned out in the targeted area, it turned to beautiful, pink skin. And I have pictures to prove it! Wow! Just writing this makes me feel weepy. It really happened. Of course, I’m not cured – it was just one spot on one callus. This trial was just the first step in a very large process. But it’s still amazing. I could write pages and pages about the trial and exactly what happened.

I did give a presentation of the trial from “a patient’s point of view” at the Patient Support Meeting in Scotland just a few weeks ago, complete with photos. We hope to get that presentation posted soon so all of you can see exactly what happened and really, what it all means for all of us.

In the meantime, while this siRNA trial has been happening, still other treatments for PC are being developed. Which one will be the very best one for us is yet unknown, but the fact that there is more than one is just amazing. Once again, I express my undying gratitude to those incredible people who are working so hard for us PCers!

Back to School… again

1 September 2008

School started a few weeks ago for my children. As usual, at our elementary school, we met with our children’s teachers a few days before school began for parent-teacher-student conferences. Because one teacher was behind and another one was ahead, I was still visiting with Spencer’s teacher when Nate’s teacher was ready for his appointment. Dave went on to that one. I joined them just as they were finishing up and therefore missed the entire conference. I asked Dave if he told Nate’s teacher about Nate and PC. Dave said yes, but we had forgotten to bring the PC Project “Back to School – PC Basics” brochure. We said to each other that we’d send it later and then just let it slip.

However, a few weeks into school, with high temperatures and no air-conditioning, Nate’s feet were very sore at school. His class was doing dance – something Nate enjoys. But, on this day, he told his teacher – as he was supposed to – that his feet were bad. She told him to just go ahead and dance anyway. So he did. He’s a pretty compliant kid, which is a mother’s dream at home, but sometimes, I’ve wished he’d be a little less compliant in certain situations. This was one of them.

I’ve no doubt Nate’s teacher has seen him play at recess, running around playing football and other sports. He looks perfectly fine. Not too many people get that sometimes he can run around and other times he can’t. And it’s true, sometimes Nate – like all of us with PC – chooses to “run around” and then pay for it later with blistering and increased pain. And in the case of the dancing day, Nate paid dearly when he came home from school with terrible pain in his feet.

We need to help our teachers understand that our PC kids are affected by many things – infections, the weather, shoes, socks, activities from the day before, even too much activity from the recess before – and sometimes for no reason that I can always tell, our feet just hurt extra badly.

It’s been my experience that teachers are kind and compassionate. They are willing to help our kids. They just need a little knowledge. I blame myself completely for the dance incident. The brochure would have gone a long way in helping her understand. Even if Dave did an excellent job of explaining Nate’s PC to his teacher – which I’m sure he did – it still doesn’t mean she got it. Sorry fellow PCers – but again, in my experience, PC just seems too strange for many people to really grasp.

So I just did what I should have done before school ever started. I picked up some brochures from PC Project. I wrote a little note, explaining a little more about Nate’s feet. I didn’t address the “dance day” – because it’s wasn’t her fault at all. But I did let her know that Nate is the only one who can tell if he can walk or run on any given day. Or even at a given time during a day. This whole experience is just another reminder to me that educating others about our rare PC is a lifelong process.

NOTE: Jan’s presentation given at the 2008 Patient Support Meeting on her clinical trial experiences is now posted with the IPCRR Videos & Presentations.

Back to School… For me!

1 October 2008

I’m almost 40 and this fall I did what I consider to be a very brave thing. I enrolled in one class at the University of Utah. The first day of school, I was excited, a little nervous and feeling that exhilarating first-day-of-school feeling. As I walked to class amongst the throngs of students, I looked at them and wondered if they felt that those feelings too, after all, we are all just young college students, right?

But then it dawned on me – I don’t look like them! There I was thinking we’re all the same when really, I look 20 years older than most of them. To those students, I look like the old married lady that I am. It’s just that when I’m surrounded by lots of young adults, it’s hard for me to remember that I don’t look just like them!

After being in school for over a month now, I’ve also realized not only do I not look young like they do, but I’m not the same and my life is not the same. (That includes my memory!) However, after 20 years, especially with PC, some things about going to college are exactly the same. Here they are:

• Parking – Trying to find a place to park that doesn’t leave me so far to walk to class on a big campus that once I get there I’ll think only about pain instead of the lecture. (I miss the days when I rode my bike from my apartment and could park it right outside the buildings where I had class.)
• Walking distances – Even if I do get a decent parking spot, there is really no such thing as a “close class” on a college campus. Everything is just big. There is no such thing as not having sore feet after having been to class, simply because of the walking. And I only have one class! Good thing I graduated when I was young and didn’t have children. Back in college 20 years ago, I always carried pins or needles with me to pop my blisters when needed. Sometimes right in class, I would discreetly stick a pin through my sock to get to a blister, just to relieve the intense pressure. So I can’t complain now at all. I think it would have been harder to have that much pain as a full time student with lots of walking, and then have to go home and take care of a family.
• The awkward “PC walk” – I’ve had to walk around the classroom and stand in front of the class several times now and it’s still awkward. I simply don’t know how to walk “right” and I feel very self-conscious about it. Also, because it’s a big campus and a fairly long walk to class, I do take my crutches along. I don’t care if I’m just an old lady to everyone I pass – and I mostly pass people who I’ll never see again on any given day – I still feel awkward with my “crutch walk”. Is my book bag sliding off my shoulder? Is my shirt climbing too high on the sides?
• Kind people – After 20 years, I am still appreciative to kind people who open the door for me as I’m approaching a building. Were university doors always this heavy? It’s made me aware that I must continue to teach my boys (and husband Dave is the best teacher by word and by example) to open doors for any woman – young or old – and whether they have crutches or not. Maybe that’s not a very liberated viewpoint, but it’s important to me, and after all these years, I’m still grateful for kind people who open doors for me.
• Answering PC questions – After a long time of not talking often about my PC, I’m going through the question again, “What happened?” in all forms and varieties. And what’s funny, the first times it’s happened, I immediately went back to my old standard answer, “Bad feet.” Whatever happened to all that great stuff I learned about answering questions at the patient support meeting discussions? Wow, habits die hard. But see, I don’t get asked about my PC much anymore. I mostly live in a comfortable circle of people who know me. So college life is bringing out all those old feelings – even awkwardness – of having to explain things again more frequently than I’m used to. I have gotten better at answering though, thanks to the patient discussions! It’s also been a good reminder that my own boys are still going through that, and will for a long time as they experiences new situations and meet new people.
• Accepting people – There are a lot of good people in this world, people who are accepting of me, regardless of my funny looking nails and my weird walk. Frankly, I don’t think anyone in my class really understands about my PC. But the best lesson I learned in college 20 years ago (I wish I had learned it earlier) is still applicable today – If I act comfortable with my PC and with myself, other people are comfortable with my PC and with me too. Actually, the PC becomes a non-issue. One month into class, and there is always a cluster of people around me – no one seems to care at all that I am “different” – age wise or physically.

I still have a hard time remembering that I don’t look like a 20 year old when I go to school each day. It’s refreshing to be around so many young adults who work hard and care deeply about their futures. It’s a positive experience. And it’s also helped me recall the experiences I’ve had, and that I’m having again, so I can be empathetic to my own children and other PCers as they navigate through school and college life.

Fall Weather

1 November 2008

The fall season in Utah has always been my favorite time of year. Besides the stunning array of colors from the changing leaves, the weather is cooler and my feet typically feel better.

This year, I’m a bit confused as to why, even with the cooler weather, my feet are extraordinarily sore. My calluses aren’t blistering or infected, they just hurt more to walk on. It’s kind of a raw pain – like the pain I often feel when I first wake up, except now it seems to last all day. I also have some calluses that have a few more bloody spots than they usually do, thus causing extra pain, even while I’m not walking. For example, right now, I have a particular callus on my right foot that always alternately stings or throbs all the time. I feel it even as I type here.

I would be curious to know if other people with PC have extra pain for no reason that they can pinpoint. Like if the weather is hot, or if I do a lot of walking, I know my feet are going to hurt more than usual. But what about when nothing is out of the ordinary and the pain is still extra bad?

I always walk with pain – that’s a given with PC. But when the pain is a little more than I expect, it’s hard to not feel a little discouraged about it. I get used to doing things in life a certain way, even with PC. Then when even those things need adjusting, or they take more effort, I find it exhausting, not just physically but mentally.

Don’t worry – I’m not depressed. But I do find myself working harder to stay motivated when every move takes so much mental effort. I wish I could forget my feet sometimes. These days I’m aware of both of my feet about all the time.

It’s a good thing it’s still so gorgeous outside. I can still let the stunning beauty of nature take my breath away – instead of the pain.

Different is OK

1 December 2008

Recently I talked with a college student with PC. She told of the difficulties walking across a big campus. She doesn’t use crutches, a cane or any kind of walking aid. She told me she doesn’t want to be different; she doesn’t want people to know she has PC. She also doesn’t want to answer the questions that come with using some kind of walking aid.

I remember when I was in college having my doctor tell me he knew of another person with PC who was also in college. This particular person missed class a lot and the doctor told me she didn’t engage in nearly as many social activities as me. I asked if she used crutches or any kind or walking help. My doctor said no. I always felt badly for this person I never met.

Anyone who knows me knows I use crutches often. The main reason is to “lengthen my walk” (do more and do it faster!) Even as a college student, if my friends and I were going to do something really fun in the near future, they would tell me, “Don’t waste your walk.” Crutches and sometimes a wheelchair have helped me do more and go farther. I hate to be different, I hate to answer the questions, but I haven’t always understood why people won’t get the extra help.

I think that I’m starting to understand this side of it, especially after talking to this young college student. I also understand more because I’m seeing it in my own family. A few months ago in this Corner, I mentioned my son Nathan was having a lot of pain with his feet after dancing at school. I talked to his teacher and both she and the dance teacher have been very sensitive about his feet, giving him full permission to sit out if he wants to. There’s even now a plan if he wants to sneak out and just go read he can.

However, Nate is still dancing and coming home barely able to walk with blistering calluses. The reason he is still dancing is he told me he doesn’t want to be different and he doesn’t want people to wonder or ask what is wrong with him.

Nate may be extra sensitive, because last spring, when it was hot and his feet were very sore, I was going to keep him home rather than have him participate in a fitness day of running, running, and more running. The school called me the morning of the event and said the teacher would give him something “special” to do that would make it so he would not have to participate and still not be embarrassed. This “special” thing was to send him for the duration of the activity to the bench by the school office – the one where children go when they’re in trouble. So not only did my straight-A child who is never in trouble get asked by all his classmates why he didn’t participate, but everyone who saw him for those hours (with no book to read, nothing) asked him what he did to get in trouble! He was mortified!

A kind of funny thing happened with Nate this last Halloween though. Halloween here in the USA is the last day of October. The children dress up in costumes and after dark go door to door “trick-or-treating” in hopes of getting candy at each home they visit. The day before Halloween, Nate danced at school. The day of Halloween was another busy day for walking at school with the Halloween parade and an active class party.

Nate’s feet were so sore that evening he wondered if perhaps his younger brother could just trick-or-treat for him. That was a sure sign Nate was in a lot of pain! When I suggested he go in my wheelchair (which he will normally NEVER do) he hesitated. And then, because he was dressed up as some kind of weird, face-painted scary thing, he said, “Great! I’ll be a crippled…(whatever it was he called himself)!” I thought it was so interesting that Halloween gave Nate the chance to use the wheelchair uninhibited. It was part of his costume so it was ok.

Dave said Nate never would have made it without the wheelchair. The little bit he did walk, navigating stairs and such was more than enough. The bad side of the wheelchair is it gave Nate the ability to “trick-or-treat” longer and farther than he ever would have just walking and all my boys got an obscene amount of candy!

Everyone with PC has a different reason for using certain types of walking aides. Sometimes it’s because the mutation is different – the feet just aren’t that painful and no extra help is needed. But there may be others reasons too. And just as I’m glad people don’t look down on me for using crutches, I also want to be supportive of those who choose not to use extra help for their own reasons and for their own personal feelings.

Happy New Year 2007!

1 January 2007

Happy New Year! When I write a Jan’s Corner, I try to write about what’s on my mind in my PC life. My most overwhelming thought right now is that of incredible gratitude to the people who are working so hard for PC Project and PC research. I wish I could somehow convey to all of those with PC the things that go on behind the scenes at PC Project. Most people see only this website. I’m not sure many people have a clue about the hours, costs and sacrifices that are made by really just a few individuals who have dedicated their lives to finding a successful therapeutic for PC. It amazes me how much they care and I am thankful beyond what any words in this Corner can express.

PC Project’s mission statement is “To find a cure for PC.” Knowing that, I am even MORE grateful for all the optional things PC Project has done to bless my life and the lives of my two children who have PC, such as:

A booklet just for patients Access to consultations with a highly qualified medical doctor An informative website with a patient message board Brochures to give to teachers and health professionals Free genetic testing Periodic emails and newsletters for me as a patient, and of course Patient Support Meetings both in Europe and North America.

I have only mentioned a few of the extra things PC Project provides for me, but those things have changed my life forever and the lives of my children. We are all better educated (and we’ve educated those around us), we know better how to cope both physical and emotionally, and we don’t feel so alone in the world.

None of those extra things are needed in order to find a cure for PC. They are all provided for by by just a few PC Project volunteers apart from the funds that go directly to research. Beyond the cost of these ‘extras,’ is the time spent in making and answering phone calls, writing emails and letters, designing and executing every brochure, newsletter, blood kit packet, planning the patient meetings and so on. It’s all a labor of love to help make the lives of PCers better while a valid treatment is being developed.

I feel so grateful for all the extra things done on my behalf as a PC patient. In addition, I’ve not even touched on the time, time, time and enormous costs involved in the research process. There are people involved there who have truly given us their hearts. In return, I start the year 2007 in giving them all my own thankful heart!

Frustrated

1 February 2007

Today I’m feeling a bit frustrated. Two days ago I did a lot of fun activities with about 15 small children. Since I was in a carpeted area, and my feet were sore (as usual), I simply walked around on my knees for a couple hours. I guess it’s a sign that I’m getting older because I used to be able to walk on my knees any time I wanted to and for as long as I wanted and my knees would be just fine. But now, two days after my fun adventure, my knees are still very sore. When I’m going to do things like that, I try to use my knee pads, but this day, I got too involved and simply forgot to put them on. And now I’m paying for it.

Today – and yesterday – my feet are sore, but that’s to be expected. After all, I do have PC. But when my knees are sore AND my feet are sore, it really gets in the way of doing things I’d like to do. For example, my upstairs carpets really need to be steam vacuumed. My plan was to do that yesterday. The machine is very heavy – so I only steam-vac on my knees so I can muscle the big apparatus around without hurting my feet. And it’s fine to do it on my knees -unless I’m careless and “walk” on my knees too long without using my knee pads.

I’m not really complaining. For one thing, my bathrooms are clean, my hardwood floors are mopped, and most of the house is vacuumed. And I do have nice children who are capable of doing things too. And I could steam vacuum if I really wanted to – I could grit my way through the pain. But I’m not sure it’s worth ruining my knees. I guess I’m writing about this because I just hate it when I want to get things done – on MY time – and my body says “no thanks.” It’s that way often with PC feet too.

But, I do know from experience that in a few days, my knees will be back to normal. I’ll put those knee pads on – just in time to mop the floor and scrub the bathtub out because it will be time to do those things again too. And maybe I’ll even get those carpets deep-cleaned.

Comparing with Others

1 March 2007

As you know, two of my three sons have PC. That means they have the exact mutation so you would think all of their symptoms would be exactly alike. However, it’s interesting to me how differently PC affects each of them – especially in regard to pain.

Nate, who is now 10, walks around like he has no pain. At the end of a very busy day, especially if he’s worn boots or shoes all day, his feet will hurt and feel hot – and he doesn’t like that feeling – but he’s still okay. Nate is also playing football during recess at school and snowboarding every weekend.

Sam on the other hand, who is 12, can barely make it through school on his feet. He comes in the door at the end of the day and falls to his knees in pain. He does walk quite a bit in his regular day and he doesn’t stop doing what he needs to do because of his feet, but he is clearly in agony when he gets home. It’s not a rare thing for Sam to look absolutely fine around other people, and then when we’re all alone, he’ll drop. For example, if I pick him up from school, he’ll be with other kids, talking and smiling. Then the second he’s inside the car and the door is shut, he is groaning from pain and pulling his shoes off as quickly as he can.

Sam also is my boy who seems extra sensitive to the heat. He often wears sandals in the winter or at the very least some kind of canvas shoe that is cool and breathable. Nate, on the other hand, can wear closed in shoes or boots in the wintertime and be all right. I’ve observed this same thing in other PC families I’ve met – siblings with the same mutation and one walks more or less than the others. It does not mean one child is “tougher” than another. I understand that although we have the same mutation in our family, as individuals, we have modifier genes, other genes that affect the way PC and the associated pain manifests itself.

For our own little PC family, we have learned not to compare with one another. No one can say mine hurts more, or we are the same so that means you must be faking it. Also, though Nate seems to be doing better than Sam right now, these roles have been reversed in the past. Who knows how they’ll each do when the weather gets warmer? I’ve also learned that kids will be kids and nothing will stop them from doing what they want to do. So if a child falls to his knees in pain when he thinks no one is looking, you know the pain is real. Each child must be supported and his pain be taken at face value.

Changes

1 April 2007

When I wrote last month, I never dreamed of the changes in my children that would come so quickly. Almost overnight, Nate’s feet turned terribly bad – blisters everywhere that need popping several times a day. The blisters were extensions of his regular calluses and turned his feet into a raw, mushy, painful mess.

I thought maybe the warmer spring weather might have affected Nate, but since Sam was actually walking much better, I couldn’t totally attribute Nate’s problems to that. There were also no noticeable changes in his lifestyle, no new shoes, shoes, nothing. Nate limped terribly and it broked my heart to see him in so much pain. This is the worst I have ever seen his feet. For the first time ever, I watched as he sidelined himself from activities he loves. I also hated the hopeless feeling I had because everything I was trying wasn’t working (and I was trying everything I could think of!) and his feet remained in awful shape.

Nate’s feet showed no obvious signs of infection – no redness around the blisters or red streaks in the skin, no thick, colored pus. (The fluid from the blisters was always clear and we tried to keep needles sterile and the blisters clean.) However, because I was feelings so helpless, I made an appointment with Dr. Leachman, our family dermatologist to have a look at Nate’s feet. I wasn’t sure what she could do because I could see no obvious infection, but I was out of ideas.

But then, I was almost embarrassed when we went to the doctor’s because Nate had been home from school for a few days and the mushy blisters were starting to dry up. I was starting to wonder if it was a wasted trip. Fortunatedly, it was the best decision of all. Dr. Leachman saw signs I didn’t see. See also took some cultures of his feet. As it turned out, Nate had two different strains of infection in his feet. The infections might not have been obvious to me, but they were there, causing havoc.

This totally knocked out my belief that an infection is only manifested by redness and colored, stinky pus. Nate definitely needed an antibiotic to get his feet under control. Within a week, his feet looked much better – back to his “normal” calluses. He was even walking again without the terrible limp he’d been walking with for the past several weeks.

Interestingly enough, Sam was walking around quite well. My boys really did switch places in the way PC was affecting them. Another thing, though Sam’s feet had been doing really well, he did have a toe that was red. I couldn’t tell for sure if the original problem was with the nail or the skin around it but they both areas looked bad and there was some pus in the thin layer of skin surrounding it. It was such a small spot, I wondered if it was worth a trip to the doctor. But I figured since Dr. Leachman was seeing Nate, I might as well make an appointment for Sam at the same time. It was a good thing I did because Dr. Leachman took one look at Sam and pronounced he needed an antibioitic too. This one was red and it was close to the bone. She explained once again, the importance of not messing around with infections.

You know, I often think because I have PC that I know quite a bit. This experience has taught me that I’m still learning. I also still need the help of a doctor on occasion, and I should never feel badly about taking my kids in and trying to get the best help for them. I also need to remember that regardless of what I see with my eyes, and whether or not what I see fits with my current knowledge, my mother’s intuition is often the best “advice” to follow – even if it means getting help above and beyond what I can give.

IPCC Meeting

1 May 2007

At the first of this May, Mary and I went to Los Angeles to host the fourth annual International Pachyonychia Congenita Consortium (IPCC) meeting. We typically hold it in conjunction with the annual SID (Society of Investigative Dermatology) meeting, usually the day before the SID meetings officially begin.

The decision to have an annual IPCC meeting was made at the very first symposium in Park City when scientists first gathered to discuss PC research. It is a way of staying in touch – in person – even though our consortium members, especially the primary researchers, are in touch weekly, even daily sometimes. But, because our scientists are spread throughout the world, it’s an excellent opportunity to come together once a year, learn and be connected to the latest findings. Scientists give presentations on what they’ve accomplished, discovered, etc. and then the group discusses and makes research decisions for the upcoming year. I’ve been very blessed because of my role with PC Project to be a hostess for PC Project at these meetings. Scientific meetings are typically not for patients. These are some of my non-scientific observations about this latest IPCC meeting:

Observation #1 – This time, like every time, I’m amazed the scientists came. They take extra time and costs to come a day early to the SID meetings in order to attend our meeting. Some come only for our IPCC meeting. They come from all over the United States, and the world too – Scotland, Singapore, China. Mary and I got a few chuckles when Mary received calls from anxious secretaries who wanted to be sure the scientists or doctors they worked for would be allowed to attend. We’re thrilled to have these scientists attend and it’s hard to imagine them asking ‘is it okay?’ As this IPCC meeting asked for pre-registration, I thought it interesting that scientists wanted to be sure to be included. PC Project gave a travel stipend to each registered person who attended and offered the option to return it as a donation. Almost all returned the stipend to PC Project. What it is about this PC consortium that is drawing the attention of big names (and great minds) in research? What is it about this group that makes people so generous with time and resources?

Observation #2 – Although we required pre-registration for this IPCC meeting, many (about 30), who were attending the SID meeting and were not registered for the IPCC, came and sat in the back at the IPCC. We always set up the conference room in a large U-shape to promote discussion after the presentations. There is an assigned seat for everyone. But in the back this time, every extra chair was filled, people were standing against the walls, and the hotel people kept bringing in more chairs. I’ve never seen anything like that at one of our IPCC meetings before. I can only guess that maybe they read the main SID program which announces our PC meeting as an ancillary meeting. Then, after reading who was presenting, they wanted to come and hear these incredible scientists. We do have some impressive names on our team. My other thought is maybe PC research really is vaild. Maybe we do have something. We think so. Maybe others are starting to think so, too.

Observation #3 – PC is becoming more familiar among dermatology scientists. The SID meetings officially began the day after our IPCC meeting. Part of those meetings include oral presentations and poster presentations. At certain times, the author of the poster is available to discuss the research while other scientists who are interested can seek them out. They are given the opportunity to talk about the research presented. It seems to me to be a great opportunity to exchange ideas and learning and to generate interest. It’s quite an experience for me to walk up and down the rows of 1000 or more posters and scientists. The thing I found most fascinating was to hear other scientists refer to what they called “PC Row.” There were so many posters that included the word, “Pachyonychia.” I’m not naive. The world of skin-related research is enormous. But I think three years ago, there would never have been a “PC Row” at a meeting such as the SID where thousands of scientists participate. I am incredibly grateful for what scientists are doing to help us when we are such a rare disorder.

Patient Support Meeting

1 June 2007

We recently held our Patient Support Meeting in Park City, Utah. We had 46 PCers attend, plus their family members, as well as a dozen doctors and scientists (for a total of about 130 people). It was our largest gathering ever. Our constantly growing PC Project does seem to translate into larger numbers at these meetings and we’re adjusting as we go. For example, this is the first meeting where we’ve needed two separate children’s tracks (with a younger track for those six and under).

Because of our growth, every patient meeting is new, different than the previous one. It seems we are constantly evolving. Each meeting has its own flavor, I’m sure, based on the mix of personalities. Yet in many ways, each patient meeting is the same. It is the same connecting of people who may have nothing else in common except they understand each other in ways no one else on earth can.

The best part for me at this past meeting was seeing PCers from previous meetings and meeting new people. When I saw PCers I’d met before, even two years ago, it felt like I was with good friends I’d been with only yesterday. I love the reunion feel of a patient support meeting. Then there’s the wonderful opportunity of meeting new people. I love meeting those I’ve communicated with either by phone or email because I feel like I already know them. I love finally putting a face with the name. I feel connected immediately.

At this past meeting, as at all patient meetings, I am always impressed at what people with PC are doing with their lives, how they are coping, how they are succeeding. I am amazed at the scope of careers PCers have. I see how parents are raising their children. I see how PCers manage each day. You inspire me and teach me.

So thanks to everyone who participated in this past patient meeting. I’m a better person for having been with you!

After all, we’re family.

1 July 2007

Several months ago, I took my boys with PC – Sam and Nate – to our dermatologist for some problems about their PC. Spencer, who is 7 years old and who doesn’t have PC, came along. Sam and Nate got a lot of attention from the doctor as she thoroughly examined their skin. She is caring and loving and Spencer watched this examination for some time.

Then Spencer came up to me and whispered, “Can the doctor look at my skin too?” I just smiled. Fortunately for us, this nice doctor caught on quickly and kindly looked at Spencer’s skin. Spencer does have eczema that we work to keep under control and so the doctor was able to take a real look.

That experience was a reminder to me that our children without PC need attention too. Typically, we tend to focus on the infected nails, the blisters that need popping or bandaging, the trimming. We try not to make a big deal of it all at home, but obviously, we have to care for the PC and it is a part of our lives. The important thing is for me to remember that Spencer needs to feel a part of things too – especially in a family such as ours where he is the only one without PC.

There are times when I may be talking with Sam and Nate about PC and how hard it may be at the time, perhaps because of weather or something, and Spencer will pipe up with how his toe hurts or how his eczema hurts. The others will say, “Oh yours doesn’t hurt like ours does.” But I know as a parent, Spencer’s feelings are just as important. The others get attention because of PC that he doesn’t get.

In some ways, it’s kind of funny – when Spencer was younger, Sam and Nate would ask why he didn’t have PC. They wished their nails were more like Spencer’s and dad’s nails. They wished they had feet like Spencer’s too. PC Project has really changed how Sam and Nate feel about their PC. Sometimes now it seems like Spencer is the odd one out.

PC is a big part of our lives, particularly because our family is so involved with PC project. The kids see me working on my laptop at home, often answering patient emails. They hear me talking with the director, Mary (grandma) often on the phone. They know I go into the PC Project offices. They’ve seen projects, especially for the patient meetings, laid out on the living room floor. They’ve participated in many of those patient meetings. All of my children have been involved at some point or another. We talk about current research and other PC Project topics at our dinner table. We might be a more extreme family when it comes to PC topics simply because of who we are and Spencer is part of it all.

At the same time, nothing will change the fact that Sam and Nate really would like to be like Spencer and not have PC. I have to be careful because when Sam and Nate are really hurting, it’s easy for me to ask Spencer to do the running. I have to be sure that chores are spread out evenly. For example, if I know it’s a bad feet day, I try to subtly give Spencer chores that may involve more of the walking – like taking the garbage out, for instance. But it still has to be fair. He’s never complained, but I don’t ever want him to resent Sam and Nate because he has to do more, or because he has it harder and they get off easy because of their pain.

The reality is they do have more pain than Spencer. I just have to be sure and treat them all my children fairly. Some days, one may get more attention than the other because of different needs and circumstances, but as long as it given consistently to all, over all, that’s okay. They shouldn’t have more or less love and attention because of their sore feet, lack of sore feet, or for any other reason. They all get it because they are my children – no other reason.

At the same time, Spencer is learning compassion for his siblings. He’s becoming more sensitive to hurting feet. I’ve heard him often jump up and say, “Here, I’ll get that for you!” He may be the youngest in the family, but he knows he can still serve his older brothers. Recently, Nate and Spencer were playing with each by the river at the family cabin. They had wandered along the river quite a distance away. I was watching out a window and I wondered about Nate, whom I knew had pretty sore feet that day. But then I saw Spencer, who is much smaller than Nate, piggybacking Nate back to the cabin. I can’t imagine, knowing Nate, that he asked Spencer to carry him. Knowing Spencer, I’m sure he volunteered. I can’t tell you what that did inside my heart to see little Spencer carrying Nate. The most important thing, regardless of PC, is that we have each other and we love each other. After all, we’re family.

Josh Groban

1 August 2007

A few nights ago, the extraordinary singer Josh Groban came to town. To explain how much I enjoy his voice, if he sang “Twinkle, Twinkle Little Star” I’m sure it would sound like a masterpiece. So to hear that voice live…well, the day concert tickets went on sale I was ready to secure my spot in the arena. That said, I thought I’d take you through just one event in my life and how it was affected by my PC.

The first part of the event was pain-free. Thanks to the internet, getting the concert tickets was easy.

The day of the show, I’d been pretty busy. So when Dave came home from work, just before I was to be picked up by my concert buddies, he found me lying on my stomach across the bed with my feet sticking up in the air. I was hoping those five or ten minutes with my feet up might earn me some extra walking or standing time later that evening. I also took three “preventative” pain pills.

I probably would have dressed up a little nicer, but since my most comfortable shoes for walking and standing are very casual looking, I elected to wear jeans. I’m sure Josh didn’t mind. I just wanted to explain that it’s the shoes that dictate what clothes I wear – not the opposite.

The sold-out show meant lots and lots of people. I paid extra to get us into a close parking lot. (It was worth every penny.) Still, the walk – and the line into the doors – in 95 degree temperature – was long. By the time we got into the arena, my three pain pills didn’t seem to be working. That’s okay. It was all very exciting and my hot, sweaty feet were just an annoyance I chose to block out.

Our seats were really great. Right on the side, very close to the stage, and only 18 rows up. I was glad to be in the stadium type seats. There were floor seats but as a PCer, I would never want floor seats unless I was on the front row because everyone stands pretty much the whole time at about every concert I’ve ever been to. And at this concert, towards the end, the whole floor pretty much crowded the stage, so I wouldn’t have wanted even front row seats there anyway. I wonder if only a PCer would look at floor seats and feel grateful to not be in them.

The opening show was fantastic. And we all sat. Which was good, because once Josh Groban came on stage for his show, we stood a whole lot more. It was also announced that they had chosen our concert to be the one filmed for a DVD, which made the audience extra hyped. Every time Josh came up on the platform close to our half of the stage, our whole side stood and screamed. Ah, the fun of a concert! I could be this guy’s mother, but even at my age, I’ll cheer for anyone that can sing like that.

Then of course, there were lots of other antics, performances and effects to stand and clap for. By the time we reached some of the encores, I was reaching in my pocket to grab a few more pain pills – based on a vague thought in my mind that I might need them just to make it back to the car. I was also leaning on my upright seat instead of fully standing. But I didn’t mind. I would’ve stayed there all night, just to hear that voice.

When Josh Groban left the stage for good, I finally really thought about my feet. But I was still too excited to care. As soon as we reached the car, my shoes and socks were off and I was rubbing and scratching like crazy, all the while enjoying the rush of exclamations with the others about the incredible performance we’d seen.

The next day was one in which I felt truly blessed not to have to go to work or to school. My feet burned all day. I took some pain pills later that afternoon just to run some simple errands and to get my children places. The day after that, my feet were still on fire. They finally started feeling back to their PC “normal” the following day although they were still mushy and tender.

Okay, so the concert was a two-day commitment. I hadn’t expected that cost. But looking back, I have no regrets. I made a planned choice to participate and enjoy something. My whole life is full of those choices – some on a grander scale than others, and some more spontaneous. Not all events would be worth it. Some I choose to skip. Especially because I have a family to care for, I really can’t do things on a regular basis that will cause even a day’s worth of ramifications. But in this case, I chose the extra pain. The exhilarating sound of Josh Groban’s voice in my ears was enough to sooth the pain in my feet.

More Changes

7 September 2007

A few weeks ago, for no reason I could fathom, the calluses on my feet changed physically. The temperatures were cooler than they’ve been, the kids were back in school and I should have been in a good place with my PC. However, for about two weeks, typically somewhat dry calluses turned mushy, leaving open parts all over them. I could actually look down into the calluses and see this raw layer of skin – or something – beneath the pieces of the calluses. I don’t know if what I’m describing makes sense because it’s such an unusual occurrence for me. For those two weeks, I called them my “pregnancy feet” because that’s how my calluses became each time I was pregnant. Fortunately, last week they began to dry up again over several days and I am now back to my PC normal.

The thing that made the physical change in my calluses so difficult for me is the changes were accompanied by incredible pain – the “crazy pain.” Sure, I deal with pain all the time, as do most PCers. It was just interesting to me how I felt when I was dealing with increased, more intense pain for those two weeks. I found my motivation to accomplish things was a lot lower. All I wanted to do was put my feet up and do mindless things. Household chores became burdensome. I chose to make the easiest meals possible. I had zero desire to run errands and I only did so if absolutely necessary. The thought of even putting on socks was unbearable. Because life doesn’t care if you are in pain or not, I still had to bully my way through the pain and get certain things done, but I truly did the bare minimum.

I realized, too, that I had to watch myself and still be kind to my family members. Just because I hurt like crazy didn’t give me license to be grouchy to my innocent kids. (As for Dave, it’s impossible to be grouchy at him, because he’s so good to me.) I was paranoid about anyone getting near my feet for fear they would touch them. I was also extra tired because I didn’t sleep well at nights. I wonder, too, if dealing with intense pain affects fatigue levels. Finally, I found that I was getting discouraged and even a bit depressed, especially after the first week. Even though my motivation was low, I still had a mind that wanted to do things and I felt frustrated and helpless.

Like I said, I’m fine now. But the experience made me thoughtful about how I deal with extra bad pain. I’m no champion, that’s for sure. In hindsight, would I have done anything different? I don’t know. When the body and the pain take over like that, I felt like all I could do was cope. I lived more reactively than proactively during that time. That’s not the most fulfilling way to live, in my opinion. I only hope now, after this short-term extreme pain experience, that I will be more compassionate to others who deal with trials, whether they are PC-related or not. And, I certainly hope I will be empathetic, not judgmental, about the way people react to their situations.

Sometimes having a rare disease can be inconvenient

1 October 2007

Sometimes having a rare disease can be inconvenient. Last week I went to the dentist for my bi-yearly check up and cleaning. The dental hygienist is one I’ve seen before and who understands that the whiteness on my tongue is part of my PC. This time however, she was concerned because there is a place on the lower side of my tongue where the whiteness runs down the side, unlike the rest of the white areas which are basically symmetrical. The white was also a lot brighter. The hygienist didn’t say “cancer” but I’m sure that’s what she was thinking. She showed the spot to the dentist and advised me to see the oral surgeon down the hall. She even went so far to see if that office could see me when I finished my check up. My dentist was pretty sure it was just part of my regular white tongue, but again, because this white patch was different from the other parts, he said it couldn’t hurt to get it checked out.

So after my dental appointment, I went down the hall to the oral surgeon’s office. I, too, was quite sure the white streak was just part of my regular white tongue. I feel like I’m well educated about PC, but honestly, I’d never really looked at that lower side of my tongue before. I couldn’t say whether that unusual white part had always been there or if it was new. As I sat in the waiting room, I stewed about whether or not I should just walk out, especially since this oral surgeon didn’t accept my insurance and the visit would cost me $50.00. But then I didn’t want to be stupid and ignore something that could be a potential problem. I finally decided peace of mind was worth it.

I had to first explain to the oral surgeon all about PC and my tongue. At first he thought I was there because of the whiteness on my tongue because he started telling me different ways to possibly get rid of it, although he did tell me it would probably just grow back. I knew he must be pretty knowledgeable because he even called it Leukoplakia. [IMPORTANT – the correct name of this PC condition is leukokeratosis and not leukoplakia. As leukoplakia can be pre-cancerous and leukokeeratosis is not, knowing the correct term is important for PCers in speaking with medical professionals. Editor]. I quickly assured him I wasn’t there to try to get rid of it – that he just needed to look at the funny white streak and tell me if it looked like the rest of my tongue or if it was something I should be concerned about. The doctor determined quickly that it was just part of my PC. He did want to measure it and take a picture of it. He also said to watch it and that I could come back in six weeks as a follow up. But I think we both knew I wouldn’t be back.

It’s okay. I paid my bill. I told Dave about it at over dinner that evening. Before I even told him I decided to pay for peace of mind, Dave said it was better to pay and know for sure it wasn’t cancer or something, than not know and wonder, especially if it had been something more than it was. Sam piped in on the conversation and reminded us that once he had been told by another dental hygienist that he was biting his checks and tongue and therefore causing the white stuff in his mouth.

And that’s what I mean about it being inconvenient having a rare disease. I know a lot. But I still don’t know everything. And I know more than most. I often find talking with others about PC that we don’t know what’s always natural because we’re not dealing with “natural” things in the first place. We have to learn first what’s “natural” for PC and then help others learn. And for me, even when I think I know everything, I still find I’m learning.

Thanksgiving

1 November 2007

Tomorrow we celebrate Thanksgiving here in the USA. I love the Thanksgiving season because even though I try to be thankful all year round, it’s a good reminder for me to count my blessings.

With PC Project, my many blessings come in the form of people. I am so grateful for the many PCers who have touched my life. They have given me strength, ideas and encouragement. They’ve also been great role models for my children with PC. If you are a PCer reading this, I hope you’ll know what a tremendous blessing you are to me. Because of you, I do not feel isolated or PC lonely.

I’m thankful for the scientists and physicians who graciously share their time and talents within the PC consortium. I’m thankful for their spirit of cooperation and collaboration in a competitive field. In particular, I’m thankful for the scientists close to this siRNA project that is coming closer to clinical trials. They’ve found something that has a real shot at working. I never thought I’d see the day. I’m still amazed that scientists who are so brilliant they could do successful research anywhere are dedicating their careers to finding an effective treatment for the very rare PC. If nothing even worked, I’d still be grateful because of their tremendous efforts for us PCers.

Part of my thanks concerning the upcoming clinical trial is towards three consultants not associated with our PC consortium who have volunteered their time, talents and expertise. When these professionals whom we’ve never even met realized this is an out-of- pocket expense for a rare disorder, not a pharmaceutical project, they donated all their services free of charge. There is absolutely no way this clinical trial would be at the point it’s at now, or could proceed, without these remarkable individuals continually helping this complicated process.

A little closer to home, I’m grateful to Mary’s assistant at PC Project, Holly, who is the perfect match with perfect skills for a PC Project team member. She is cheerful, happy and competent. Every time I’m around her I am impressed by her abilities and disposition. I know Mary appreciates her very much. The “office staff” at PC Project consists of Mary and Holly so that tells you how much Holly is valued. Last week, Holly went on vacation. I knew for sure she was priceless because of how much she was missed.

Finally, my greatest thanks is for Mary. I think I could just stop typing because nothing I write here will ever convey what her work and her sacrifices mean to me. If there were no PC Project, I would still have an incredible second mom who I talk with and confide in, who helps me with personal problems and cheers me on in life. She would still have my greatest thanks. Everything Mary touches in her life is successful, regardless of what it is, big or small. Mary helps many people and in so many ways. I could make lists of the organizations and people she’s helped and influenced. Mary could have chosen any cause, any project and made it just as successful as PC Project. But she chose PC. Maybe she would tell you PC chose her. Either way, I am humbled, grateful, and still overcome with emotion even after several years of watching her labor with love day after day (and night after night) to help us PCers. She does it without any thought of personal reward or gain. But even without her PC work I am thankful that I have her in my life forever.

Yes, it’s Thanksgiving time here. To all of you wonderful people in the PC world – THANK YOU!

Happy New Year 2006

1 January 2006

And happy it is! With plans already set in motion, this year appears even more promising and more wonderful than last year – if that is possible.

Included in the 2006 plans are another patient meeting in Scotland, several important scientific gatherings for PC researchers, and probably most importantly, all the behind the scenes research that is occurring in labs around the world. If last year’s history is any indication, PC Project will continue to move forward at breakneck speed. I still need reality checks to comprehend this is really happening.

Amidst it all, my heart is warmed by the goodness of so many people. Mary’s sister in Florida sent 100 PC brochures to people she knows and many sent in contributions of $5, $10, $50, and $100. I wrote an email to my immediate family, telling them how to shop through the website to help us raise funds. In turn, my sister-in-law emailed my letter to many people she knows. I know many of you have told your friends about the shopping portal on our PC site. Suzanne, a PCer in England, has now set up similar fundraising shopping opportunities in Europe. PCers in France are setting up their own local support network to help with translations and fundraising efforts. Other PCers are looking out all the time for new products, shoes, creams, etc. and reporting back on their effectiveness. I could go on and on. Others are contributing in monetary ways – and no matter how big or small, not only does every cent go directly to research, it ensures our status as a charity.

In addition, the release of the PC-specific JID publication has put “pachyonychia congenita” on the brains of dermatologists and scientists worldwide. Now, when a new PC patient goes to a doctor for help, there is a definitive resource to turn to for help. And just yesterday, a researcher emailed me to ask if he could use a photo to use in a presentation at a medical research conference to promote the PC cause and encourage researchers to check out our website. I could share many more examples of helping individuals in the medical and scientific world. PC is definitely getting “on the research map.”

And so, on my wish list for 2006 is the hope that as many people as possible around the world can “find” PC Project. I know there are many more PCers out there but language and different situations are surely barriers. And, I hope that each one will participate in the research registry – especially so they can be genetically tested to know their exact mutations. When I think of the progress of the research, I don’t want any PCer left ‘undiscovered.’ But all in good time… Besides, look where we were two years ago and look at us now. Inconceivable – except that’s it’s all really true! Welcome 2006!

Discovering PC Project

1 February 2006

Today I spoke on the phone with a man with PC who found us through this website. When I first said hello, the man was overcome with emotion. He could hardly believe he was speaking with another person with PC. And even more so, he was moved that finally, something is being done for people with PC – a website, a support system, and above all, research.

This incident is not an isolated one. It’s almost a repeat of nearly every call I’ve had with people who discovered PC Project for the first time. I’ve also been to patient meetings where people meet for the first time and burst into tears. There’s so much emotion involved for all of us after spending so much of our lives feeling all alone in dealing with PC.

Now that I’ve been meeting with people with PC for over two years since the Project began, I have to look back and remember how emotional it was for me the first time I talked with someone with PC. What a thrill it was for me to actually talk with someone over the phone, through the internet, and then finally meet another person with PC.

I will say this, though – having met and contacted so many PCers has not diminished in any way the thrill and excitement I feel EVERY time a new person with PC finds us. It’s as exciting as the very first person ever to email in to PC Project. When Mary and I saw that email, we got so excited that PCers were out there, looking anxiously for some hope, looking for a PC Project! It’s made us both realize how very important this Project is – to me – and to all PCers.

Today, when I talked with this man, I was inspired and edified by him. I hung up the phone smiling and on a high. It was like Christmas day — and lives changing other lives as we all benefit from each other, is the best gift of all.

Burning Feet

1 March 2006

Lately my 11-year old son has been waking up every night because his feet are “burning.” He has all the sores and calluses that I do and they look like they always have with no extra infections – so what’s wrong? What’s making his feet hurt so badly right now? When he wakes me up to tell me about the pain, I take notice of my own feet. I notice they are “burning” too. Even while I sit here typing, I feel the burning. But am I just so used to it that it’s no longer a big issue for me?

I remember once as a young adult my feet hurting extra badly for no apparent reason. I made an appointment to see a dermatologist who knew me well – and my PC symptoms. When he saw my feet he said he expected them to look a lot worse than they did. I remember feeling a bit badly about that. How bad do my feet have to look for someone to believe the pain is severe?

As for my son, is he now just coming into a stage of PC where he will begin to feel pain almost always? Will he get used to it? I have PC yet I still feel so helpless. There are some things I can do to help my boy feel a degree of pain relief, but for the most part, I fear he will feel this constant pain for the long haul – at least until the cure comes…

Still Learning about PC

1 June 2006

As we prepare for the upcoming patient meeting in Dundee Scotland, I am reminded that even though I’ve lived my whole life with PC, my understanding of PC has increased immensely just from meeting others with PC.

At the patient meeting in Kansas City, Missouri in 2004, I met 10 others with PC who had nails and feet that looked very different from mine. I wondered why some calluses looked so much worse than mine and why some looked so much better. I wondered why some could walk so seemingly painlessly, while others hurt much, much more. I wondered how much care and treatment played into those differences.

One person with PC had beautiful flat fingernails. They were a tiny bit raised, but for the most part, they were flat. The top smooth part also extended the length of any normal nail! (On my nails, the top part extends only half way across the nail bed and my nails are raised quite a lot.)

I asked this PCer many questions about how he cared for his nails. I was amazed that he had PC and could still have such terrific looking nails. He kindly showed me the tools he used to trim with, how he filed, in which direction, and how often and on and on. As much as I wanted to know, he graciously shared and explained to me. There were others with me who thought that if I took the time to file and trim in such a way, in time, my nails could look as flat as his. There was a sense that if you filed a certain way, you could get nails to grow a certain way.

Honestly, I wasn’t sure. For one, I wasn’t sure it would be worth the time and trouble to do all that filing. But I was very interested for my two young sons. I wondered if I could trim and file their nails at this young age, if such a change could occur for them and they could have more normal looking nails.

It wasn’t long after that that we discovered that no amount of trimming or filing would ever change my nails to look like this other person with PC. He had a different mutation from mine. And even if he had the same mutation, we all have other modifying genes that also affect the symptoms of PC. I’ve learned that everything about PC can be very different from patient to patient – from the way the feet look, the hands, skin, tongue, everything. We’ve found there are at least three distinct ‘types’ of PC nails and care doesn’t change this ‘type.’ We learn more about PC every day through the patient participation.

From that patient meeting, and the others I’ve been to since, I’ve learned that I can’t determine the amount of pain a person experiences just from looking at their feet and judging from the amount of calluses and blisters. I’ve seen that a person with very few calluses may walk with more pain that another person whose feet are covered with calluses. There are just too many factors involved. I’ve also learned that people who have PC and can walk nearly painlessly can still suffer terrible pain from cysts.

I’ve learned that the way I deal with PC is different from many others with PC. And my way isn’t necessarily the best way. And even if my way is the best for me, I’d better not be thinking it’s the best way for another person. On the other hand, I’ve learned about some tricks and treatments, socks, shoes and insoles, and other ways of coping that I’d never thought about before that are now helping my boys and me. Probably most importantly, I’ve learned that PCers are a strong, resilient bunch of people, who’ve figured out that life is what you make it. I’ve learned with PC you can be a successful student, attorney, businessman/woman, computer programmer, journalist, manager, mother, father, wife, or husband. And the list goes on.

My thinking about PC – and my knowledge about PC – has changed tremendously since that time two years ago when I thought perhaps I could change the direction my nails grow. And I thank the marvelous others with PC who have come to these meetings and helped me in the learning process.

I can hardly wait until the patient meeting next month in Dundee. Once again, I expect I will learn many more things – not just about my PC, but also about me as a person.

Children With PC

1 August 2006

At the recent PC Patient Support Meeting in Dundee Scotland I spent much of my time with the children who have PC. I was amazed at the resilience of these children with PC. These kids are bright, happy and fun to be with. I was also impressed with their parents who have instilled good self-esteem in their children, regardless of the challenges these kids face growing up with PC.

The experience made me thankful for my own parents. Though I was shy, and in many ways insecure about myself growing up, I always had a good self-esteem. That may seem a contradiction. But walking awkwardly, or with crutches and having what I thought were ugly nails (probably because people told me I had ugly nails) made me feel insecure about myself. However, regardless of what people might have thought about me or even said to me, I liked myself and always knew I was a person of worth. I thank my parents for that.

At the patient meeting, I was able to spend time talking with many of the parents with PC children, particularly those parents who have children with spontaneous mutations of PC (these kids are the only ones in their family with PC). I was able to answer lots of questions as we shared experiences about raising a child with PC. Many parents also shared their feelings as well as challenges both they and their child have faced and how they’ve coped.

Again, I thought of my parents. I, too, am a spontaneous case of PC. There was no PC Project when my parents went from doctor to doctor trying to determine how to best care for me. They were basically on their own as they tried to figure out how to deal with nail infections, painful blisters, special shoes, social situations and so on. How they would have loved to have talked with other parents or someone else with PC. How blessed we are now to have this opportunity.

The parents I met at the patient support meeting have done incredibly well with their PC children. Their kids touched my heart with their smiles, talents, and undemanding love. These children are amazing individuals and a joy to be with. That doesn’t mean the heartaches and trials aren’t there. But I salute great parents and their awesome kids. What a privilege to meet them all. I think it’s wonderful that we have a resource to be together and to help one another while we raise our PC children. Thank you PC Project!

Back to School

1 September 2006

Back to school… Jan said the new PC brochures really made it easy to visit with each teacher and school staff to explain PC. But back-to-school is a busy time for Mom’s PC or not! Watch for an October posting.

RNA Interference

1 Oct 2006

This month, you may have heard the news that the 2006 Nobel Prize for Medicine was awarded to Craig Mello and Andrew Fire, two American scientists “whose discovery of RNA interference has revolutionized the science of genetics. In discovering that specific genes can be silenced through RNA interference, therapeutics are now being researched to treat, among other things, genetic diseases.”

PC research has been directly affected by this incredible discovery. The most promising research being done right now for PC patients is in the field of RNA interference. Already, scientists affiliated with PC Project have successfully inhibited the expression of the K6a gene in both tissue cultures (cells in a dish) and in mice. The treatment has been given “Orphan Product” status through the FDA meaning it has a special process at the FDA because it is for an ultra rare (called Orphan) disease.

Currently, toxicology studies are being performed to test the safety of this treatment. The treatment is given to mice over a period of 28 days and dozens of tests are performed to check all of the their organs and measure every possible thing to be sure there are no problems with the treatment. Better to experiment on mice (although very expensive) than on humans! This is necessary before our scientists are able to apply for FDA approval for human clinical trials. This is remarkably fast progress.

Since PC Project begun about three years ago, I have been awed and amazed at the timing of things. How incredible that just eight years ago, these Nobel Prize winners first made this remarkable discovery and now, our very own PC scientists are working to make this knowledge applicable to our skin disorder.

Just today, Mary and I were reminiscing about how one of the main scientists, who is working on RNA interference for PC Project, came to be part of our group. It’s nothing short of a miracle that Roger Kaspar came to our first meeting at Park City in 2004. He wasn’t on our original list of scientists, but Dr. Leachman wanted to include something on RNA interference as one of the possible approaches for PC. A colleague at the UofU told her about Prof. Kaspar and although invited at the last minute, he came to Park City and made a presentation on his work (called hairpin RNA).

Everyone was impressed that after Prof. Kaspar listened to what the other scientists had to say about PC research possibilities, he told the group he thought some of the other approaches such as siRNA were more applicable to possible PC research than the hairpin research he had presented. We thought perhaps that was the end of his research contributions to PC. But Roger Kaspar didn’t forget about us. And through a series of small, significant events (one including lunch with us in a hospital cafeteria as he was passing through Salt Lake City), Prof. Kaspar made a career change and partnered with PC Project to start a small biotech company that is devoted to PC research, primarily with siRNA interference! I could tell you amazing stories about all the main scientists who are working together to find a cure for PC. The timing is too uncanny to be ignored. These scientists each seem to step in with their contributions at just the right time in the research process – and in the patient support process. Many, many times, Mary and I both have shed tears of gratitude for them.

I will probably never meet in person with Professors Mello and Fire. But I thank them for the countless hours they surely spent in their labs to discover something that may truly be applicable to me, my boys, and all my PC friends. I also thank the scientists I do know, for their time and efforts in making the findings of Mello and Fire something that has given me, for the first time in my life, hope of walking pain-free someday. Our PC scientists may not be the Nobel Prize winners this year, but they truly emulate the word “noble” to me. Thanks to all of you!

Christmas Shopping

1 December 2006

At the end of October, I bought my first Christmas presents. Okay, I know, Christmas was still a few months away. But I was shopping for a birthday present and saw some things that caught my attention and decided it was time to get started. I shopped for a few hours, happy with my purchases. But that night, my feet woke me up about 1:00 am and I couldn’t go back to sleep for several hours. I thought, “Why are my feet hurting so badly?” And then I remembered – Christmas shopping! And that’s why I start early every year, even though Dave good-naturedly teases me about it. I can’t just get it all done in a few days because I my feet won’t let me have marathon shopping days. (I know, I can internet shop and I do – but some things I like to see for myself first.)

With PC feet, sure I can say I’ll tough out the pain to get things done. I often do. But I have to remember that I’ll do damage that’s going to affect my life for several days – and it will happen within the day, if not immediately after walking or standing. It will affect my sleep too, unfortunately. I’m also a mom of three active boys. I need to choose wisely which activities I plan to waste my feet on. Besides, I confess, it’s harder to be a happy, cheerful mom when my feet are so sore I can’t see straight.

When I was a child, I remember seeing a movie about a young girl with a disease that caused her pain when she walked. She wanted to be a runner and learned that if she made monster faces while she ran, she could work through the pain. I was so inspired by that movie. The next time there was a chance to run a race at school, I ran with all my heart, through the pain. But the little girl in the movie only dealt with the pain while she ran. She didn’t deal with oozing sores afterward and increased pain on top of the pain she normally felt. I think I was given a little dose of PC reality that day when the sores on my feet turned into a total mess as a result of my running. And when I realized I wasn’t going to be like that girl in the movie, I was very disappointed, to say the least.

But I’m not discouraged now. I just have to pace myself, even if my mind runs faster than my body. And besides, Christmas shopping for several months keeps me in the giving spirit longer than just a few days, right?

The Kiddos

1 January 2005

Okay, here’s another entry about the kiddos. (For me, at this point in my life, I’m often more concerned with my children’s “life with PC” than my own “life with PC.”) Now that the school year is half over, I’m reporting that it is going pretty well for Sam and Nate. (I actually wrote this in November, but I figured you’d heard enough from me then.)

Before school started in the fall, Dave and I talked individually with Sam and Nate about school and how they wanted us and their teachers to handle PC issues. Nate, now a second grader, had feelings about PC similar to Sam’s when he was in second grade. Nate felt other kids were now noticing (more than ever) his nails and he wanted his teacher – not us parents – to tell the class about PC, to explain it so the other kids would understand what it was and know it wasn’t contagious. Nate has the same teacher Sam had two years earlier so she already had a pretty good understanding of PC. Sam was like Nate through third grade – wanting people to know and understand PC. But this year, starting in fourth grade, Sam wanted his teacher to know about PC, but he did not want the class to hear about it. He figured most kids his age knew by now anyway and he especially didn’t want to call any extra attention to himself. He said he just wanted to be a normal kid.

So that’s what we planned on with the boys and that’s what happened. Before school started, Dave and I met their teachers at the first parent-child-teacher conference. We gave the teachers a copy of PC Project’s brochure so they could better understand PC and access the web site if they wanted.

Even though Sam didn’t want special attention given to him, when we mentioned to his teacher that heat bothers him, she said he was more than welcome, when the cold weather came, to have sandals at school and wear them in the classroom. It’s been great because recently, I finally forced Sam to wear real shoes or boots – not his sandals – when the snow came and the temperature was in the 30’s. He’d protested so long because he said his feet get too hot in shoes. But knowing we had that option made it fine. It’s a simple solution I’d never thought of – even though I wore sandals in the snow as a teenager. How nice Sam has a teacher who was already looking out for his needs before they even became needs.

Sam’s teacher has even emailed me occasionally to make sure I let her know if there’s ever any teasing going on. At the first of the year, some 6 th grade girls came up to him several times at recess and said some pretty cruel things about his nails. His teacher just happened to be there. She told Sam to go and play, so Sam doesn’t know what she said, but they never bothered him again. She’s also helped him with knowing what to say and how to act around other children. A while ago I asked Sam if he ever gets teased by kids in his class. He adamantly said, “No – that would never happen in my class.” Somehow this incredible teacher has made him feels safe. In addition, he’s making real friends in her class because she has fostered such a great atmosphere of respect.

It’s interesting to me that as Sam gets older, he wants to draw less and less attention to himself and his PC. He sings in a children’s choir. Someone must have told the director about Sam, because one day the director stopped to tell me he’d heard about Sam’s feet. He asked if Sam was okay to stand for concerts. I said yes. The director then said if the choir was ever standing in practice and Sam needed to sit, he was welcome to do so. That was nice to know since it’s quite a serious and well-disciplined choir.

Well, today at school, Sam went on a field trip that involved a lot of walking. He came home in a ton of pain. An hour later, when I dropped him off for choir practice, I told Sam what his director had said about sitting. Sam got out of the car, scoffing that there was no way he would sit, it would be too embarrassing, and everyone would think he was looking for special privileges. Okay honey, stand if you want 🙂 .

Even though I have PC, my children are so individual in their personalities and in the way they handle situations. I’ve really appreciated the advice and comments I’ve received from other people with PC, as well as parents with PC children. I’m no parenting expert and I’m grateful for all the help I can get. That’s why I’m happy to educate teachers who are also willing to help out with PC issues.

I’m Slow

1 February 2005

I’m slow. My mind, though not particularly bright by some standards, definitely moves faster than my feet. Sometimes, when I think about the possibility of a cure, I think how neat it would be to move around the kitchen quickly, preparing dishes and setting the table while gracefully moving about on my feet, instead of moving clumsily from chair to chair, or on my knees. No complaints really, I get around fabulously. An office chair with wheels works great on my hardwood floors and leaves both hands free. But sometimes when my feet aren’t so bad and I’m standing up in the kitchen, wow, it’s just FUN!

But alas, I usually cannot stand without pain. And on those few times when I can stand without pain, I have about one minute – if I’m lucky – before the pain starts in the sores on my feet and then radiates up my legs because of the intensity. So I stay on chairs in the kitchen. And I’m still pretty fast. But sometimes, I like to dream of how much FASTER I could get things done if I were on my feet. Ah, but maybe having PC is a good way to force me to slow down. When I was a teenager, my mom often said something to the effect that it was a good thing I had bad feet or else she and my dad would never be able to keep me down.

But still, though I don’t dream of running marathons (I don’t need to be THAT fast), I do think of how fun it would be to simply WALK. You know, walk around the grocery store – quickly, run errands – quickly, even take walks – quickly. I wouldn’t want to take a leisurely stroll. When I imagine myself walking without pain, I see myself walking quickly. (Even on crutches, I hate to go slowly, though that’s not always a choice.)

And best of all, I live at the base of several beautiful canyons here in Utah. I would love to hike all those gorgeous trails. That’s my dream – to hike, to feel my legs pump and climb on trails surrounded by beautiful nature. And not slowly hiking, but ever pressing forward on those trails, to see what’s around the next tree, boulder, or up the next incline. And yes, quickly. When I think of being cured, I think of life without pain, but even more so, I think of doing things quickly. Yeah, maybe it is a good thing I have bad feet.

Grand Rounds

1 March 2005

Last month, several of us PCers here in the Salt Lake valley went to the University of Utah Dermatology clinic for Grand Rounds. Grand Rounds is an occasion for doctors and medical residents from both the University of Utah and the surrounding area to come and see different kinds of skin conditions. What happens is we – the patients – go into an examining room. Then, for the next hour (or less), doctors come in and out of the room, sometimes in groups, sometimes one at a time, and look at our nails, hands, feet, tongue, skin, and so on. This is a chance for these doctors to see rare conditions and learn more about them. In the past, in such a situation, I might have felt like I was some kind of freak show at a circus. Not anymore.

When my doctor asks me about attending a Grand Rounds session, I’m more than happy to come. It’s different now that I’m involved with PC Project. I want to educate just as many doctors about PC as I possibly can. In fact, in the examining room, I don’t just sit there and wait for them to ask me about PC. If they don’t ask to see one of my symptoms, I show them, and tell them as much as I can. I want them to understand and learn as much as possible about PC. At this point, it may not make that much of a difference in my life, but I hope that if these doctors, many of them just starting out or still in school, ever come across another person with PC, they will know better how to care for that person. I’ve been at some Grand Rounds where I’ve been the only patient in the room. However, the last few times I’ve had great fun, because I’ve had others with PC who live in Salt Lake City, whom I’ve met through PC Project, come with me. Last month there were four of us in the same room. We had a great time, joking, laughing and showing off our PC. Because we weren’t all related, it was a neat opportunity to show all these medical people the different ways PC affects different people. What was even neater is after Grand Rounds, the medical folks all went to a special presentation specifically about PC, put on by yes, you guessed it, Dr. Sancy Leachman. Thanks to her, many dermatologists in Salt Lake City, and many up and coming doctors who will leave this area and practice medicine in other places, now know more about PC than ever before.

I’m also grateful for the Salt Lake City PC friends I’ve made here. Whenever Dr. Leachman has needed anything – from photos of symptoms to even skin biopsies – they have willingly participated in whatever has been needed to further the cause of research and understanding of PC. We’ve also had some nice social occasions together as well, always filled with lots of laughter and good talk. What a difference people can make in the lives of each other as we boost each other up. It’s like having a mini patient meeting every time we get together. I’ve been so impressed with them as they’ve generously given of themselves to further the PC cause. I think all of us, even those of us who are a little older, really want life to be better for all PCers. And if that means being on display for other doctors to see, hey, that’s okay with us.

Wicking Socks!

1 April 2005

I’m addicted to a new kind of socks – wicking socks. Typically, if I wear socks and shoes for any length of time, my sores get soggy and painful – I mean, MORE painful than their usual pain – even if I’m sitting down. Last fall, Mary saw an article about socks that hikers and athletes wear. They are made with synthetic fibers that wick away the moisture from feet and claim to be anti-blistering.

Since then, I’ve done my first non-official clinical trial with these types of socks. I have tried a number of different kinds of these types of socks. Today, I report that I will never go back to cotton, or any other kind of socks I used to wear in the past. These new wicking socks have saved my foot life.

I particularly like socks that have “Cool Max” in them. It’s harder to find them in regular stores. I usually have to get them at “outdoor recreation” stores. And they are a bit expensive. What I’ve done though, because there are so many out there, is buy only one pair at a time. I’ve worn them and washed them a few times. This way I know which ones react best with my feet. I like the socks that have nice padding (but not too thick – usually “medium” thickness) and still stay soft after being washed. The “Thorlo” brand is my personal favorite. My feet aren’t soggy and clammy like they used to be when I’ve worn socks and shoes. This has significantly reduced the terrible itching that usually comes when I take off my shoes, and most of all, I can wear socks and shoes longer before the pain of simply wearing them starts setting it.

Now, wicking socks aren’t a cure, and I still hurt when I walk, but they have helped me considerably enough that I am hooked for life. It’s amazing I’ve gone so many years not knowing about socks that wick away moisture. It just goes to show there may be other small and simple things out there that could help us PCers – we just might not have thought of them or found them all yet.

Summertime…

1 May 2005

Summertime…and the living ain’t easy for PCers! We’ve had an unseasonably wet, cold spring this year here in Utah and it has spoiled me because the cool weather is so much nicer for my feet. Now, suddenly, the temperature has jumped 30 degrees in just a few days and my feet are FEELING it. My feet hurt all year round, but the hotter the temperature, the worse they feel. What’s more, I hate seeing my boys’ feet hurt. They are now getting new blisters, some developing as part, or to the sides, of their main calluses, and some blisters are popping up in places on their feet where there are no regular calluses at all. What a literal pain. I hate to see my boys hurt.

I watched Nate play soccer the other day. He has strong feelings about being an asset to his team. He ran all over the field and I couldn’t tell at all that he has sore feet – until he finished playing and badly limped off the field. No one on Nate’s team knows he has PC. Sam sang in a choir concert that same day. He stood and sang his heart out. Then, when it was over, Dave piggybacked him on the long walk to the car. No one in Sam’s choir knows his feet hurt either. People have no idea what these little PCers go through on any given day. My boys can still tough out the activities they like to do. But no matter how much they tough it out, they will still feel the after effects of walking or running on their feet. The damage shows when they walk through the door and fall to their knees. And when we carefully trim their throbbing sores or lance their blisters.

But, now this heat will slow them down a bit. So we’re cranking the air-conditioner, wearing sandals (or no shoes at all), soaking our feet in cool water, and hoping our feet acclimatize somewhat to the hotter weather. I always have big plans for summer time, especially with the kids soon to be out of school, but when the heat sets in, the best laid plans seem to often take back burner to just coping with the pain.

Understanding PC

1 Jun 2005

Not too long ago, Mary, our PC Project Director, asked our friends with PC if they had any ideas to help friends and family understand PC. One of them sent a little “exercise” which I thought was terrific, because it truly is so hard to help people have a clue of what it’s like to have PC. And maybe, others don’t really need to understand, but I think sometimes it helps for people close to you, who are going to be in your life for a significant amount of time, to at least have some kind of understanding. So thanks to this fellow PC friend, who told me I could publish it here. “An Exercise In Understanding The Restrictions Of PC” Pick an average day to try this exercise.

You will need: A pair of sensible, flat, thick soled shoes and a pedometer/step counter (or a good memory!).

Rules: 1. You may only walk a total of 500 steps per day 2. You may only stand for up to 20 minutes per day in no more than 5 minute lots. 3. For every solid hour you can stay off of your feet, you may add 50 steps to your total for the day. 4. You are not allowed to tell anyone, other than your close family and friends, what you are doing. 5. You must avoid uneven or rough ground.

Hints and Tips: Try and park as close as you can to where you need to be, this may involve getting to work or shops earlier than normal to try and get a better space. Go to smaller shops or order shopping to be collected or delivered. Visit banks/post offices etc in off peak times to avoid queues. Take a packed lunch to work to save having to go out. Slide around on chair to filing cabinets/printer/fax etc. If you have to get up, think what else you can do at the same time. Ask others to pass things to you or deliver things for you.

Remember, this is just a lighthearted game, but if you can’t do it, then neither can we.

Thanks PC friend for sharing. And as this friend noted to me, the distances and times in the rules may be different for each PCer as our symptoms vary. The only thing I might add is a Rule #6 – All standing, walking, and excess sitting is done with constant pain – and the longer you stand or walk, the more intense the pain is and the more likely you’ll face even more pain, plus blisters and possibly infections later on as a result. But really, we wouldn’t wish that pain on anyone – even if it would help them understand PC better.

Uncle!

1 July 2005

Last May, for Jan’s Corner, I talked about the pain we’d all be dealing with as the weather got hotter. This month, I’d just like to whine and yell, “Uncle! I’ve had enough!” Is that okay? Everyone thinks I’m so strong and enduring. This month, I say to those adjectives, “Blah, blah, blah.” Sometimes I get tired of being tough – and I’m really not as tough as some people think I am anyway.

Last night I was working with some of the neat leaders at PC Project and I was asking about the pain. I wanted to understand why we PCers hurt even when we are just sitting with our feet up! I was given a very good medical explanation that there are callouses and conditions with keratodermas that are not painful…but physicians believe PC is a blistering condition. So even though I can’t see anything but a callous and can’t see a blister, underneath there is a space — and even if that space isn’t filled with fluid, the nerve endings are feeling that space = PAIN. Our feet hurt like crazy because of what’s going on underneath the callous.

A good explanation helps, but it still didn’t prevent me from dreading the move from my seat in the office, down some stairs and to my car when it was time to go home. Since my feet hurt so much just sitting there, I actually envisioned in my mind how I was going to get to my car several times before I actually started to move. And this mental role play started about an hour before I even left. Is that pathetic or what?

For me, dealing with pain is such a mental thing – maybe even more mental than physical. I have to mentally gear up for any errands or activities where I know I’ll be counting every step I take. And I’m tired of it. It’s physically tiring and it’s mentally tiring. And I’m also tired of feeling pain every waking moment. I’m tired of the ache in my feet and legs that goes with the pain. I’m tired of going to sleep every night and feeling pain, and I’m tired of waking up to it as well. There is no break.

I know it will be a bit better when the weather cools off. I know I need to just hang in there, because there are times of the year when I can actually not feel my feet hurting when I’m sitting or laying down. But that time is not now. And I know from several of you that I’m not the only one. Maybe that’s why I’m justifying putting such a whiney entry in here this month. I’m whining on behalf of all you PCers out there that tell me in private that you’re miserable, but are strong, tough, and enduring in public. I admire you so much and I know you understand. I hate that YOU are hurting, though it is nice to know I’m not alone. So I’ll say it one more time for all of us – I’m tired of pain!

Limericks

1 August 2005

I’m happy to report the weather temperature in Utah is back in the 90’s, and life with PC is once again bearable. I appreciate the fact that I can moan and groan in this Corner and still find people who are not only non judgmental, but who can empathize perfectly. I promise, I really don’t think I whine too much in my life (okay, maybe I do), but every now and then, it’s so nice to just vent. And I’d only do it to you. Most people I associate with really have no idea what I’m going through. Thanks for sharing your own experiences and for your letters of support. And what a support group you are! This month I’m going to include a limerick from another great supporter – my mom. She is always writing little poems and songs and recently sent this to me. She wrote the limerick for me, but I think it can apply to all of us PCers. Thanks mom!

There lives a fun girl we call Jan

Who likes to do all that she can.

And though she is slow

She’s eager to go.

On crutches it seems that she ran.
A problem we like to call Pac

Has put us all way out of whack.

But what ere the trouble

We just have to double

Our smiles so we don’t go “Bezack”.
P.S. We’re all looking forward to the Patient Support Meeting in Niagara Falls!

Biking

1 September 2005

Right now the weather is perfect here in Utah. After a hot summer, it feels heavenly in the upper 70’s. The mountains are radiant with the changing colors of the leaves. It’s a perfect time for my feet, and it’s a perfect time for my favorite outdoor activity – bike riding. Though there are sports I’ve always wished I could play, especially racquetball and basketball, the one thing I can do is ride a bike. I don’t have sores on the arches of my feet, so that’s where I press the pedals. Also, because biking isn’t a weight bearing exercise, even when my feet are quite sore, I can still usually do it.

I have a stationary bike for indoors which I ride quite a bit. But outdoors, I really love bicycling. For a person who spends most of my walking time limping or on crutches -both painful – riding a bike, the faster, the better, with the wind blowing in my face is absolutely exhilarating! As long as there aren’t too many stops en route where I have to put a foot down, it’s pretty much a pain-free activity.

If I have an actual destination, not just a ride, on a bike, I can often get a closer “parking spot” than in a car. In fact, while I attended college, where parking was always a mess, I would ride my bike carrying my crutches to campus and work. These days, I ride my bike to meetings, my children’s school, and other places where the walking isn’t too far once I’m off my bike.

Too often we think of things we can’t do with PC. Biking isn’t one of them. In addition, there’s numerous weight lifting exercises that can be done that don’t require much – if any – pressure on the feet. Swimming is another great option. Of course, my feet are very sore and tender for a day or so after I swim, so I only do it if I know I don’t have many walking obligations afterward. When I see others who are even more limited by physical challenges, I’m so grateful for the many things I can do. I’d love to hear what other PCers enjoy and CAN do for recreation and exercise.