Wednesday, May 23, 2012

Go Bernadette!

This is the latest news story about Bernadette Scarduzio, an amazing woman who also has CMT, like me.  4 years ago, she opened her life up to a film-maker and spent the next 3 years having her life filmed for a documentary about CMT.  The film is finally finished (yay!!) and is about to be submitted to film festivals all across the country.  I secretly really hope that it comes to would be such an awesome opportunity to see the film and to meet Bernadette here in my home state!

Here are some other links so you can read more about this amazing film:

Monday, May 21, 2012

Busy Weekend

Woohoo!  Look at me....two posts in less than a week!  We'll see if I can keep up with this trend.

We had an insanely busy weekend, and I still feel like I'm recovering from all of it.  Saturday afternoon was the first meeting of the support & action group that I facilitate through the CMTA.  I was SOOOOO nervous!!  I feel like I'm always silencing the 16-year old voice in my head that says, "You're just a young girl....what authority do you have to do this?"  And then I have to give myself a little pep talk and convince myself that I'm not the awkward, shy teenager anymore, and that I am in fact an adult (almost 30....yikes!) and that people will take me seriously.

Anyway, my sweet husband and I spent Friday night and all morning Saturday getting ready for this meeting.  If you're having a gathering of people, you need to feed them, right?  That's my mantra, anyway. So I decided to make some Starbucks-esque lemon pound cakes, barbecue meatballs, and a chicken pasta salad.  (Allow me to add the side note that I do not enjoy cooking.  I CAN cook, and I do it well.  But I pay the price later for the time spent on my feet doing it.)  The food all came together well, and all of the information got put together in time.  While I was waiting for people to show up, I kept having all these visions of nobody showing up, and me sitting there alone in a big ol' conference room eating salad and pound cake by myself.  Thankfully, that's not what happened!  There ended up being 6 of us there....a small group, but a good group.  We did introductions, and then actually spent most of the time talking, sharing our stories and experiences, and asking each other questions.  I'm not sure how everyone else felt, but it was honestly one of the coolest experiences I have ever had!  I've only ever had the opportunity to meet one other person face-to-face with CMT, so it was a bit surreal to be sitting in a room with other people who totally understand the things I go through.  I didn't get to much of what was on the agenda, and I totally don't even care.  We did talk a bit about the fundraiser that we're planning for September, so we can get the ball rolling for that.  I am beyond excited to get to know all of these people better, and can't wait for our next meeting!!

Sunday was another long day.  First off, at 9 am, my husband and I each had to give a 15-minute talk at our church meeting.  It went well and I was happy to do it, but that meant getting up earlier than my tired body wanted to so I could get everyone out the door in time. (We barely made it!)  After that, we got the family all loaded up to head down to Southern Utah to check out the annular solar eclipse.  By the time we picked my son up from his dad, swung by to grab everyone else, and got to where we were going, we had been in the car for roughly 5 hours.  Now, I've been on a lot of long drives in my life, and aside from a little muscle stiffness, I've never really had a problem.  But yesterday, I started having a new problem that I'd never really experienced before.  I had been so busy making sure my baby was happy, that I hadn't noticed my left leg (the one I wear my AFO on) slowly swelling.  It was fairly swollen and sore when we finally got out of the car, but a bit of walking around at the park seemed to help.  The city we were in was supposedly THE spot to see the eclipse, so there were quite a few people there.  We were set up in a park, so the kids had a chance to get some energy out and go play on the playground for a couple hours, and I had a chance to just lounge around with my baby.

I was feeling tired, but pretty good when we started out on what ended up being a 5-hour drive home (normally, without all the traffic, it would have taken just over 3 hours).  By the time we arrived home at 1:15 am, I was in a lot of pain.  My back was screaming, every single joint in my body felt locked up, it felt like I had charlie horses throughout my legs, and my left leg was more swollen than I had seen it in a very long time.  We got the kids into bed, and then I sat down on the edge of my bed to take my AFO off.  I seriously had to pry the thing off my leg.  The indentations on my leg from my AFO and my sock were bright red, and hurt to touch them.  My husband collapsed on the bed next to me and was immediately asleep....I thought I'd fall right to sleep as well, but that wasn't the case. I was so uncomfortable and in so much pain that I tossed, turned, and cried for about an hour before pure exhaustion took over.

Unfortunately, Monday morning came all too soon.  I feel like I've been run over by a truck.  Luckily the swelling is completely gone, that's one good thing.  If I'd had my choice, I would have instigated a "pajamas and movies" day.  Instead, I had to get all of us presentable and to my son's school to watch his end-of-year program.  He did such a great job, and I was so happy to be able to be there.  Seeing the joy on my kids' faces when we go do fun things together or when I attend one of their school functions or extra-curricular practices helps make the inevitable physical sacrifice so much more worth it!  I'm starting to feel a little bit better tonight, so hopefully tomorrow I'll be back to my "normal".

Friday, May 18, 2012

Clearing Out The Cobwebs

I know, I know.....I'm a slacker.  It feels like I've been slacking in a lot of things lately.  Why?  I'm not really sure.  Chalk it up to exhaustion.....mentally and physically.   But no more!  I got lucky enough today to be a part of a fun discussion with other women who also blog about CMT.  It was so refreshing!!  I love being able to connect with other women who are going through a lot of the same things I am!  I read some new blog posts, and have resigned myself to sit here and blog until all the cobwebs have been dusted away.  It's time for an update!

Ok, we'll start with Addison.  Addison turned 4 in March, and thankfully I think she's leaving parts of the "terrible 2's and 3's" behind finally.  We just had her visit with the doctor up at Shriner's a few weeks ago.  I always get so nervous before these visits every 6 months, but I have to bottle it all up and convince Addison that this will be a fun appointment.  Have I mentioned how much I love Shriner's Hospital?  They are amazing!!  So, at the beginning of every appointment, they take Addison back for x-rays.  They put her in these hideous (but comfy) shorts, and walk her to the x-ray room.  A couple visits ago, she walked in there and got totally freaked out by the life-size skeleton they keep in there.  So now, before she will even step foot in there, she makes the nurse take the skeleton out.  I laugh and roll my eyes at her dramatics.  So this time, they actually make her stand on a stool instead of lay on the table, and for some reason she got really anxious about that.  The nurse taking the x-ray was trying to distract her, and they started talking about the purple nail polish on Addison's toes. The nurse told her that she also had polish on her toes, and that it was blue.  So of course, Addison asks to see it.  I opened my mouth to tell the nurse not to worry about it....but before I could get a single sound out, that nurse was pulling her shoe and sock off and showing Addison her bright purple toes.  That distracted Addison enough that they got the x-ray, got her a princess sticker, and sent us back to the waiting room.  After they got her weight and height, Addison bribed another nurse into giving her a purple sucker (always purple with this one).  She walked back in the room with five!  Spoiled child, I tell you.  Her appointment with the doc went really well!  Her hips are developing normally, despite the slight dysplasia, and her spine is straight. She will eventually need her achilles tendons lengthened, but we're still looking at a couple years down the road before that's a necessity.  Yay!  As we were leaving, the same nurse who helped Addison horde the suckers let her pick out a special prize (she chose a pink hat), and also let her pick something out for her little sister (a bobble-head Mickey).  As we were getting in the car, she said to me, "Mom, I like going to this doctor!  It's so much fun!"  That makes me happy to hear. :)

As for me, the past few months have definitely had their ups and downs.  After having my bone spur removed last fall, things seemed really great.  I was able to get through all the holidays 95% pain-free, and I kept hoping things would stay that way.  Boy, was I wrong!  I should be used to this roller coaster of pain that comes with CMT, but I always find myself hoping that the highs will stay longer than they ever do.  Around the end of January, my left foot started aching every now and then.  I thought it was just the cold weather, but it kept getting worse.  Strangely, it wasn't so bad when it was in my brace, but once the brace came off I wanted to cry because it hurt so badly.  Roughly around the same time, the outside edge of the bottom of my right foot began to get really sore.  I've always had a small callous there due to the position of my foot, but it had never really bothered me until then.  Now, I'm used to one foot really hurting for one reason or another, but still being able to kind of rely on the foot that wasn't hurting.  Having both of them in pretty much constant pain made me beyond miserable.  I made an emergency appointment with my orthopedic surgeon.  The callous on my right foot had ulcerated, and he had to clean the infection out. (Ouch!!)  Nothing showed up on the x-ray for my left foot, but the surgeon said he was afraid the pain may be the start of a stress fracture.  Just the news I wanted to hear!  4 weeks later, my right foot was looking better, but not really feeling better, and my left foot still hurt.  More x-rays and another exam of the left foot still showed nothing.  This was the middle of March.  By the middle of April, my right foot was back to normal, with a nice little callous in the same spot where the previous one was.  My left foot was feeling a bit better, but still really hurting every now and then.  I decided to chalk up the pain in my left foot to the pieces of screws that are still stuck in my bones.  It's the only explanation I can come up with without getting a bone scan and MRI.  And unfortunately, there's no way to get those pieces of screws out of the bones.  I guess you could say I'm screwed.....literally.

This last roller coaster of pain has left me beyond exhausted.  I can usually muster up some bursts of motivation and energy to get some stuff done, or to go do something fun with my husband or kids.  Not this time.  I've been in an energy slump for weeks now.  I even took a girl's weekend with one of my best friends, hoping that a weekend of fun relaxation could re-invigorate me.  Nope.  I can sleep for 8 hours, and still wake up feeling exhausted.  I hate it.  Especially as summer is approaching, and I have all of these fun ideas of things to do with my kids running through my head.  I want to have a summer full of memories, not a summer of me just telling my kids to go play outside or find something else to do because I'm too exhausted to do anything else.  I went and saw a new doctor a couple weeks ago, who ran some blood work to test my hormones.  Apparently, after having 3 kids, they're all out of whack. (Yeah, I know, just the kind of thing you wanted to read about.)  So I'm on a new medicine regimin, which the doctor says should help improve my energy in the next month or so.  I'm definitely crossing my fingers on this one!  Oh, and I also went and got the padding on the bottom of my brace built back up......that 1/4 inch change makes a huge difference when it comes to my hip!

And as for the last bit of news....tomorrow is the first meeting of the CMTA Orem Utah Support & Action Group!  Aaaahhh!!!  I've got so much running through my head about this, and about trying to get a fundraiser set up for awareness month this September.  I'd better run get everything finished for tomorrow, but I'll post again after the meeting.  Wish me luck!