Jan's Corner 2009

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Contents

December

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!

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.

October

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.

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!

August

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.

June

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.

May

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.

April

Spring Snow

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.

March

Patient Support Meeting - San Francisco

Last week my son Nate and I attended the PC Patient Support Meeting in San Francisco. In all, 15 people with PC attended. As PC Project has grown, so have the numbers at the patient support meetings. Of course, that is great. I did enjoy, though, once again attending a smaller meeting. I talked with every single person who attended. I liked that. I love being with my fellow PC people.

The meeting was a lot like other patient support meetings in that we got a basic PC background. When I was first learning about PC, I found myself eager to understand why I have PC. I’ve found knowing that has even empowered my boys who have PC. They don’t feel so weird when they just know it’s a single mistake in the DNA strand and exactly what that means. But because science is not my background, I always like the refresher course I get at these meetings.

One of my favorite presentations at every patient meeting is the one about current PC research. I get excited every time and feel so grateful for what is being accomplished. Another presentation I thoroughly enjoyed was one on pain. I loved having a dermatologist talk with us about pain. I love knowing there are doctors that truly understand and who want to learn more. Throughout the pain presentation, this particular doctor had us hold up colored cards – red if something didn’t apply to us, green if it did. It was neat to see similarities amongst us, and it was also telling that we can be so different.

Okay, here’s my confession: I sometimes get uncomfortable at patient support meetings because I walk a lot with crutches while many other PCers do not. I feel insecure and feel like I’m not as “tough”. The best thing about presentations like this one is it reminded me (once again) I cannot compare my pain to even the person sitting next to me. We who have PC understand one another because we obviously have common issues, but we are different. At the meeting I met three of five siblings who all have PC. They told me how different they were, even in the same family and with the same genetic mutation. Yes, I know this is true, but I still have issues with it sometimes when I meet others with PC who seem to do more physically than I do.

We also had a few new features that were fun – all provided by patients. One patient presented information on PC genetics. Another provided an exercise video just for PCers. I was inspired to get moving again. Another PCer shared his experiences with pain clinics. Another PC was a model while his wife, a massage therapist, demonstrated techniques and talked about the about the benefits of massage. At first it was hard to imagine anyone touching my feet. But I was one of the lucky ones who received a hand and a foot massage. Not only was it pain-free, it was completely relaxing, soothing and I crave another foot massages just writing about it. Who’d have ever thought I’d say that? And I appreciate the massage therapist because at first I was so self-conscious, worried if my feet smelled funny (which they often do) and especially worried about how they looked. She kindly reassured me and gave an awesome massage.

Another PCer led the patient discussion. He did a super job. I liked discussing in a smaller group. Everyone got the chance to share and it was easier for me to open up with less numbers. You can read all the details of the patient meeting on the main page of the website. Just know how thankful I am to these talented PCers who spent so much time preparing and sharing with us. I’m also thankful to everyone who participated. You are wonderful people and I feel like I’ve made some new friends!

As PC Project membership continues to grow, we’ll always be re-evaluating everything we do, including these patient support meetings. But I recognize these meetings are a gift. They are a bonus. The goal of PC Project is to first and foremost find the cure and effective treatments for PC. So I appreciate all the more the extra time and resources it takes for PC Project to provide these meetings. Thank you for another rewarding experience.

February

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.

January

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.

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