Jan's Corner 2010

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Contents

December

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!

November

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?

September

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!

August

Life With PC: Special Article by Katri-Anna Lehto

23 August 2010

Katri-Anna Lehto was able to share her PC story with a magazine in Finland and we've linked the English translation and photos here for you to enjoy. [Read the article here.]

May

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!

April

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.

March

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.

February

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!

January

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!

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