Jan's Corner 2005
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1 October 2005
Today I made a $6.38 donation to PC Project. We’ll, sort of. I actually wanted to buy some things at one of my favorite on-line shopping stores, Eddie Bauer. But instead of going straight to the Eddie Bauer website, I first got on this – the PC Project website -and checked the box “Help us Raise Funds by Shopping Through our Marketplace.” (You can even see the box at the left of the page while you’re reading this Jan’s Corner right now.) So I clicked that box, typed in “Eddie” in the search box and there was the same old Eddie Bauer website I’ve shopped at many times previously. I proceeded to shop, placed my order, and about a week later my purchases were delivered to my door, same old deal.
And then today, about two weeks after placing that order, PC Project got a statement in the mail saying Eddie Bauer had donated $6.38 to PC Project because of my purchase! I was so excited – and it was all for things I was going to purchase anyway.
Now maybe $6.38 doesn’t seem like that very much money, but it was thrilling for me to know that I had done something so very simple and PC Project had received that much more money to go directly towards research.
I am just one person, and in the big scheme of things, I really don’t do a lot, but that day, I made a difference. I’ve checked out all the stores that are listed on that “Fundraising Marketplace” and found not only do I shop at a number of them, my friends and family members do too. (I’m now telling them all about how to go through our website to shop.) I cringe to think I’ve actually bought things online from some of those stores without accessing them first through PC Project’s website. Never again – it’s too easy to not help in such a simple way. Of course, I won’t buy things unless I really intend to purchase them, but with sore feet, online shopping has always been a good investment for me. And besides, it’s the least I can do for a Project that’s dedicated to helping me and my boys walk free of pain someday.
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.
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!
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!
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.
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.
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.
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.
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.
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.