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.
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.
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.