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!


Lenka said...

Hi Melissa! Good to see your post! I know exactly what you mean about the ups and downs of CMT, and the HUGE wanting to have fun with our kids instead of being exhausted all day long. The worst is when I rally enough energy to get somewhere, the park or store, then run out of steam midway. I get snappy with them, then angry at myself. Not fun!

Facilitates me how our 'normal' stories sound so crazy if you are outside the CMT world. I also had a winter/spring of problems with medication, pain in my feet, then in my hip. And it sounds so wild if your don't understand CMT.

That's why I am so glad that we are all connecting online, too! I need all of you now more than ever! I hope we all have a fantastic summer. Hopefully energy will find us :)

Lenka said...

Oops, meant fascinates, not facilitiates. Silly wrist brace with autocorrect!

I'm Nic. said...

Add me to the "Frustrated by my CMT body, particularly in the summer" list! I head ya! Looking forward to a post about how your first Support Group meeting went! nd

Casee said...

I am happy to hear Addison is doing so well, and that she likes her doctor, that is always a bonus. I am sorry that the last few months have been rough (pain and energy wise) I really hope that you can figure out how to gain back your energy and that you aren't totally "screwed" and something will change with your foot pain.