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.