Jan's Corner 2008
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Different is OK
1 December 2008
Recently I talked with a college student with PC. She told of the difficulties walking across a big campus. She doesn’t use crutches, a cane or any kind of walking aid. She told me she doesn’t want to be different; she doesn’t want people to know she has PC. She also doesn’t want to answer the questions that come with using some kind of walking aid.
I remember when I was in college having my doctor tell me he knew of another person with PC who was also in college. This particular person missed class a lot and the doctor told me she didn’t engage in nearly as many social activities as me. I asked if she used crutches or any kind or walking help. My doctor said no. I always felt badly for this person I never met.
Anyone who knows me knows I use crutches often. The main reason is to “lengthen my walk” (do more and do it faster!) Even as a college student, if my friends and I were going to do something really fun in the near future, they would tell me, “Don’t waste your walk.” Crutches and sometimes a wheelchair have helped me do more and go farther. I hate to be different, I hate to answer the questions, but I haven’t always understood why people won’t get the extra help.
I think that I’m starting to understand this side of it, especially after talking to this young college student. I also understand more because I’m seeing it in my own family. A few months ago in this Corner, I mentioned my son Nathan was having a lot of pain with his feet after dancing at school. I talked to his teacher and both she and the dance teacher have been very sensitive about his feet, giving him full permission to sit out if he wants to. There’s even now a plan if he wants to sneak out and just go read he can.
However, Nate is still dancing and coming home barely able to walk with blistering calluses. The reason he is still dancing is he told me he doesn’t want to be different and he doesn’t want people to wonder or ask what is wrong with him.
Nate may be extra sensitive, because last spring, when it was hot and his feet were very sore, I was going to keep him home rather than have him participate in a fitness day of running, running, and more running. The school called me the morning of the event and said the teacher would give him something “special” to do that would make it so he would not have to participate and still not be embarrassed. This “special” thing was to send him for the duration of the activity to the bench by the school office – the one where children go when they’re in trouble. So not only did my straight-A child who is never in trouble get asked by all his classmates why he didn’t participate, but everyone who saw him for those hours (with no book to read, nothing) asked him what he did to get in trouble! He was mortified!
A kind of funny thing happened with Nate this last Halloween though. Halloween here in the USA is the last day of October. The children dress up in costumes and after dark go door to door “trick-or-treating” in hopes of getting candy at each home they visit. The day before Halloween, Nate danced at school. The day of Halloween was another busy day for walking at school with the Halloween parade and an active class party.
Nate’s feet were so sore that evening he wondered if perhaps his younger brother could just trick-or-treat for him. That was a sure sign Nate was in a lot of pain! When I suggested he go in my wheelchair (which he will normally NEVER do) he hesitated. And then, because he was dressed up as some kind of weird, face-painted scary thing, he said, “Great! I’ll be a crippled…(whatever it was he called himself)!” I thought it was so interesting that Halloween gave Nate the chance to use the wheelchair uninhibited. It was part of his costume so it was ok.
Dave said Nate never would have made it without the wheelchair. The little bit he did walk, navigating stairs and such was more than enough. The bad side of the wheelchair is it gave Nate the ability to “trick-or-treat” longer and farther than he ever would have just walking and all my boys got an obscene amount of candy!
Everyone with PC has a different reason for using certain types of walking aides. Sometimes it’s because the mutation is different – the feet just aren’t that painful and no extra help is needed. But there may be others reasons too. And just as I’m glad people don’t look down on me for using crutches, I also want to be supportive of those who choose not to use extra help for their own reasons and for their own personal feelings.
1 November 2008
The fall season in Utah has always been my favorite time of year. Besides the stunning array of colors from the changing leaves, the weather is cooler and my feet typically feel better.
This year, I’m a bit confused as to why, even with the cooler weather, my feet are extraordinarily sore. My calluses aren’t blistering or infected, they just hurt more to walk on. It’s kind of a raw pain – like the pain I often feel when I first wake up, except now it seems to last all day. I also have some calluses that have a few more bloody spots than they usually do, thus causing extra pain, even while I’m not walking. For example, right now, I have a particular callus on my right foot that always alternately stings or throbs all the time. I feel it even as I type here.
I would be curious to know if other people with PC have extra pain for no reason that they can pinpoint. Like if the weather is hot, or if I do a lot of walking, I know my feet are going to hurt more than usual. But what about when nothing is out of the ordinary and the pain is still extra bad?
I always walk with pain – that’s a given with PC. But when the pain is a little more than I expect, it’s hard to not feel a little discouraged about it. I get used to doing things in life a certain way, even with PC. Then when even those things need adjusting, or they take more effort, I find it exhausting, not just physically but mentally.
Don’t worry – I’m not depressed. But I do find myself working harder to stay motivated when every move takes so much mental effort. I wish I could forget my feet sometimes. These days I’m aware of both of my feet about all the time.
It’s a good thing it’s still so gorgeous outside. I can still let the stunning beauty of nature take my breath away – instead of the pain.
Back to School... For me!
1 October 2008
I’m almost 40 and this fall I did what I consider to be a very brave thing. I enrolled in one class at the University of Utah. The first day of school, I was excited, a little nervous and feeling that exhilarating first-day-of-school feeling. As I walked to class amongst the throngs of students, I looked at them and wondered if they felt that those feelings too, after all, we are all just young college students, right?
But then it dawned on me - I don’t look like them! There I was thinking we’re all the same when really, I look 20 years older than most of them. To those students, I look like the old married lady that I am. It’s just that when I’m surrounded by lots of young adults, it’s hard for me to remember that I don’t look just like them!
After being in school for over a month now, I’ve also realized not only do I not look young like they do, but I’m not the same and my life is not the same. (That includes my memory!) However, after 20 years, especially with PC, some things about going to college are exactly the same. Here they are:
- Parking – Trying to find a place to park that doesn’t leave me so far to walk to class on a big campus that once I get there I’ll think only about pain instead of the lecture. (I miss the days when I rode my bike from my apartment and could park it right outside the buildings where I had class.)
- Walking distances – Even if I do get a decent parking spot, there is really no such thing as a “close class” on a college campus. Everything is just big. There is no such thing as not having sore feet after having been to class, simply because of the walking. And I only have one class! Good thing I graduated when I was young and didn’t have children. Back in college 20 years ago, I always carried pins or needles with me to pop my blisters when needed. Sometimes right in class, I would discreetly stick a pin through my sock to get to a blister, just to relieve the intense pressure. So I can’t complain now at all. I think it would have been harder to have that much pain as a full time student with lots of walking, and then have to go home and take care of a family.
- The awkward “PC walk” - I’ve had to walk around the classroom and stand in front of the class several times now and it’s still awkward. I simply don’t know how to walk “right” and I feel very self-conscious about it. Also, because it’s a big campus and a fairly long walk to class, I do take my crutches along. I don’t care if I’m just an old lady to everyone I pass – and I mostly pass people who I’ll never see again on any given day – I still feel awkward with my “crutch walk”. Is my book bag sliding off my shoulder? Is my shirt climbing too high on the sides?
- Kind people – After 20 years, I am still appreciative to kind people who open the door for me as I’m approaching a building. Were university doors always this heavy? It’s made me aware that I must continue to teach my boys (and husband Dave is the best teacher by word and by example) to open doors for any woman – young or old – and whether they have crutches or not. Maybe that’s not a very liberated viewpoint, but it’s important to me, and after all these years, I’m still grateful for kind people who open doors for me.
- Answering PC questions - After a long time of not talking often about my PC, I’m going through the question again, “What happened?” in all forms and varieties. And what’s funny, the first times it’s happened, I immediately went back to my old standard answer, “Bad feet.” Whatever happened to all that great stuff I learned about answering questions at the patient support meeting discussions? Wow, habits die hard. But see, I don’t get asked about my PC much anymore. I mostly live in a comfortable circle of people who know me. So college life is bringing out all those old feelings – even awkwardness - of having to explain things again more frequently than I’m used to. I have gotten better at answering though, thanks to the patient discussions! It’s also been a good reminder that my own boys are still going through that, and will for a long time as they experiences new situations and meet new people.
- Accepting people – There are a lot of good people in this world, people who are accepting of me, regardless of my funny looking nails and my weird walk. Frankly, I don’t think anyone in my class really understands about my PC. But the best lesson I learned in college 20 years ago (I wish I had learned it earlier) is still applicable today - If I act comfortable with my PC and with myself, other people are comfortable with my PC and with me too. Actually, the PC becomes a non-issue. One month into class, and there is always a cluster of people around me - no one seems to care at all that I am “different” – age wise or physically.
I still have a hard time remembering that I don’t look like a 20 year old when I go to school each day. It’s refreshing to be around so many young adults who work hard and care deeply about their futures. It’s a positive experience. And it’s also helped me recall the experiences I’ve had, and that I’m having again, so I can be empathetic to my own children and other PCers as they navigate through school and college life.
Back to School... again
1 September 2008
School started a few weeks ago for my children. As usual, at our elementary school, we met with our children’s teachers a few days before school began for parent-teacher-student conferences. Because one teacher was behind and another one was ahead, I was still visiting with Spencer’s teacher when Nate’s teacher was ready for his appointment. Dave went on to that one. I joined them just as they were finishing up and therefore missed the entire conference. I asked Dave if he told Nate’s teacher about Nate and PC. Dave said yes, but we had forgotten to bring the PC Project “Back to School – PC Basics” brochure. We said to each other that we’d send it later and then just let it slip.
However, a few weeks into school, with high temperatures and no air-conditioning, Nate’s feet were very sore at school. His class was doing dance – something Nate enjoys. But, on this day, he told his teacher – as he was supposed to – that his feet were bad. She told him to just go ahead and dance anyway. So he did. He’s a pretty compliant kid, which is a mother’s dream at home, but sometimes, I’ve wished he’d be a little less compliant in certain situations. This was one of them.
I’ve no doubt Nate’s teacher has seen him play at recess, running around playing football and other sports. He looks perfectly fine. Not too many people get that sometimes he can run around and other times he can’t. And it’s true, sometimes Nate – like all of us with PC – chooses to “run around” and then pay for it later with blistering and increased pain. And in the case of the dancing day, Nate paid dearly when he came home from school with terrible pain in his feet.
We need to help our teachers understand that our PC kids are affected by many things – infections, the weather, shoes, socks, activities from the day before, even too much activity from the recess before – and sometimes for no reason that I can always tell, our feet just hurt extra badly.
It’s been my experience that teachers are kind and compassionate. They are willing to help our kids. They just need a little knowledge. I blame myself completely for the dance incident. The brochure would have gone a long way in helping her understand. Even if Dave did an excellent job of explaining Nate’s PC to his teacher – which I’m sure he did – it still doesn’t mean she got it. Sorry fellow PCers – but again, in my experience, PC just seems too strange for many people to really grasp.
So I just did what I should have done before school ever started. I picked up some brochures from PC Project. I wrote a little note, explaining a little more about Nate’s feet. I didn’t address the “dance day” – because it’s wasn’t her fault at all. But I did let her know that Nate is the only one who can tell if he can walk or run on any given day. Or even at a given time during a day. This whole experience is just another reminder to me that educating others about our rare PC is a lifelong process.
NOTE: Jan's presentation given at the 2008 Patient Support Meeting on her clinical trial experiences is now posted with the IPCRR Videos & Presentations.
1 August 2008
I’m back! Thanks to all of you who have been so understanding (and supportive) while I took a break from Jan’s Corner for all these months.
As many of you know, I’ve been involved with the first siRNA clinical trial for skin in a human being. The clinical trial proved to be more time consuming and more physically and mentally demanding than I’d anticipated. That first month of January, I wrote a Jan’s Corner about shoes. And while shoes are very important to us PCers, my heart wasn’t in it and I never posted it. At that point, the trial was consuming my life and all I could really focus on was what was happening to me. I had plenty of thoughts about the trial that I would have loved to share with you all, but I wasn’t sure what I should or should not say. Needless to say, I took the time off from this Corner simply because every subject to write about besides the trial was far from my mind and heart, and yet I was afraid that what I might write about the trial might either raise false hopes or unduly disappoint when frankly for much of the trial, I really had no idea how it would all turn out.
So with that explanation, let me just say it’s nice to be back in touch. I still am in the actual trial. Although my last injections were in May, I am monitored for what’s called a “wash-out” period. The trial is also still blinded, which means no one, including my doctors, know which foot had the actual siRNA.
However, I personally am 100% sure which foot had the siRNA. Because the trial doesn’t end until August 14, I’ll wait to give all details, but let me tell you this – in my opinion as a patient, the trial was a success. I’m healthy with no known side effects at all. The primary reason for this trial was to prove safety in a human. To my knowledge, that was proven.
Best of all, after three months of gradually increasing the volume and dose concentration in the injections, the targeted callus on one foot not only thinned out in the targeted area, it turned to beautiful, pink skin. And I have pictures to prove it! Wow! Just writing this makes me feel weepy. It really happened. Of course, I’m not cured – it was just one spot on one callus. This trial was just the first step in a very large process. But it’s still amazing. I could write pages and pages about the trial and exactly what happened.
I did give a presentation of the trial from “a patient’s point of view” at the Patient Support Meeting in Scotland just a few weeks ago, complete with photos. We hope to get that presentation posted soon so all of you can see exactly what happened and really, what it all means for all of us.
In the meantime, while this siRNA trial has been happening, still other treatments for PC are being developed. Which one will be the very best one for us is yet unknown, but the fact that there is more than one is just amazing. Once again, I express my undying gratitude to those incredible people who are working so hard for us PCers!
Taking a Break
1 January 2008
We're giving Janice a break from writing this monthly column. We hope you enjoy these entries from 2004-2007. We may post special submissions from PCers around the world from time to time. If you'd like to submit a column, please send to Jan'sCorner@pachyonychia.org. All entries will be reviewed by committees of the MSAB and PAB before posting.