Thursday, September 1, 2016

The Power of One - CMT Awareness Month

And, I'm at it again!

As most of you who are reading this probably already know, September is designated as CMT Awareness Month.  Because of that, and also because of a lot of CMT-related stuff happening in my life recently, I'm going to attempt this blogging thing again.  We'll see how long it lasts this time!

So, in honor of the first day of Awareness Month (and my birthday!), please take a few minutes and watch the CMTA's new "Power of One" video, made especially for Awareness Month.  There are many familiar faces I see in this video, and showcases why I do what I do!

Monday, April 18, 2016


I was really hoping to not have to write this post.  At least not for a while, anyway.  Definitely not so soon after my last one.  But, if there's one thing I've learned about CMT, it's to never assume how anything will go.  Let me back up a little...

My last surgery, back in January, went really smoothly.  Like, picture perfect smooth.  My metatarsal got shaved down, my toe got moved down about 15 degrees, and all is FINALLY well on that foot.  My incisions are healed, there are no sores or pressure points bothering me, and my toe has finally stopped aching. Oh, and my AFO is feeling great and working well, too!

I went to Florida for a few days in March for a CMTA Branch Leader Conference (that's a whole other post), and my goal had been to be pain-free by the time I went.  I was very happy that that ended up being the case.  I got through all my long days at the conference pain-free, while wearing my AFO's 24/7.  Returning home, I was really excited to finally get back to "normal life" again, after almost a year of surgeries and recuperation.

About 2 weeks ago, the outer edge of my right foot started hurting.  A lot.  I thought that maybe I had just overdone it for a day or two, so I scaled back a bit on my walking, thinking it would fix itself.  Instead, just the opposite got worse.  A few days after the pain started, I noticed a large black spot under my skin in that area, and immediately called my doctor's office.  As I had suspected, the callous was ulcerating and bleeding under the skin.  Not fun.

The doctor and I chatted for a bit about my options, and in the end, it was up to me to decide which way I wanted to go.  I hate that.  I'd much rather someone just tell me exactly what I have to do to fix a problem.  I decided that I'd take a couple days and think about it, but it didn't even take me until the end of the day to make up my mind.  Pretty easy to do when every step becomes more painful than the last!

So, my next surgery is scheduled for this upcoming Thursday.  The fabulous Dr. M is going to shave off the edge of my 5th metatarsal, which should hopefully take a lot of the pressure off of that callous spot.  I also decided to have him straighten my big toe on this foot while he's in there.  Might as well get it all done at once, right?  At least I'll be in a walking boot and can still get around...that's a big bonus!  I'm trying not to dwell on this being my 4th surgery in a year's time, but it's a bit of a hard pill to swallow right now.  All in all, I'm just excited to get the surgery taken care of, and to get moving again.  Wish me luck!

Wednesday, January 20, 2016


I've debated back and forth for months about whether or not I wanted to start blogging again.  Anyone can see that it's been nearly 2 years since I blogged last, and my posts have been really sporadic.  I tend to really feel like blogging when something big and CMT-related is happening.  Then I put it off because of, well, life.  I suppose it makes sense....I want to share my thoughts and feelings with people who might understand when something big is happening.  So, here goes.

I'm having my 20th surgery this week.  I am going to go on record and clarify that this is not my 20th CMT-related's probably my 15th.  Still though, that's a lot. That's my share, and a handful of other people's shares, in my opinion.  It's also my 3rd surgery in the past 9 months. Excessive, right?  Let me back up a bit.  

Last April, I elected to have surgery to straighten my big toe on my left foot.  It was constantly rubbing on any shoe I owned, and I finally just couldn't take the pain.  The surgery wasn't too big of a deal, and I was walking in a surgical boot in a couple days.  Recovery went pretty smoothly, and I was certain that my problem had been fixed and I would be pain-free.  Not the case.  Apparently, straightening my toe had changed the position of my foot so much that the callous on the edge of my foot was starting to ulcerate.  My doctor, Dr. M., discussed with me how this callous would likely continue to ulcerate with all the pressure on it constantly, and suggested another surgery as an option.

                                                        Straight Toe!

This surgery he was suggesting had actually been brought up before by a completely different doctor.  It would essentially mean going in and moving bones and tendons around, in an attempt to straighten out my entire foot and make it more flat.  Sounds quite amazing, right?  Well, the surgery would also mean 8-12 weeks off of my foot completely -- not something that is easy when you have 4 children.  In any case, I brought up the option with my husband, and since we had already met our out-of-pocket max for the year (meaning the surgery would essentially be free), we decided to go with it.

I think that if I had known ahead of time exactly what having this second surgery would entail.....I seriously may not have done it.  Finding out the day before surgery that my name wasn't even on the schedule at the surgical center was likely a bad omen.  No idea how that happened, but I got on the schedule for 1 pm.  Then it got 1:30, then 2, then finally 3.  That made for a very long day of fasting.  So long, that I cheated and ate a snow cone so I didn't feel like dying.  I didn't end up going back until 3:30, and then it took nearly 5 hours instead of planned 3.  We didn't get home until almost 1 am. 


The next few days were hell.  Pure hell. (Note: never, ever, ever take Dilaudid.  Ever.  You'll thank me for this advice, I promise.)  Having the 85 staples pulled out of my foot was torture.  The 12.5 weeks following that were frustrating and never-ending.  Then the 6 weeks following that were intensely painful as I started walking in a surgical boot again.  It's been a ridiculously long process, to say the least.  Once I was able to start putting weight on my foot, I began the process of getting some new afo's (that's a whole separate post).  The finished products came in a couple weeks ago, and I was feeling anxious, but also was feeling like this was the final step.  I'd have them adjusted, take some time breaking them in, and then everything I'd gone through since April would be worth it.

I should know by now to not assume that things will go the way I plan them to.

The right afo fit just great, and actually feels quite miraculous.  The left one, however, was problematic.  Well, I should clarify that the afo was great, but my foot was not.  My big toe (the one that was fixed....twice) kind of curves up at the tip, and my 2nd metatarsal kind of pokes out on the bottom of my foot.  All of my x-rays have looked fine, but those 2 things are making it impossible to wear an afo and shoe without immense pain.

I went back to my doctor a couple days later, expecting the worst.  Despite my emotional preparation, I was holding back tears when he said that I'd need surgery again.  I ended up feeling really bad, because I could tell that he really hated having to tell me that!  (For the record, my doctor is THE COOLEST. Period.)  

So, surgery #20 is on the books for tomorrow.  Dr. M. is going to shave off the part of my metatarsal bone that is poking out, and take a bone wedge out of the bottom of my toe and move my toe down.  All in all, a pretty minor surgery.  I will be off of my foot for 2-3 weeks until the incision heals, and then everything should (hopefully) be back on track.

I'm attempting to be calm, cool, and collected about this whole thing, but honestly, I'm not.  I've done this routine so many times that I could list it as a hobby. I've had more than one anxious freak out about this. Ugh. It's not a bad sign, right?  Oh well....not much I can do about it now.  Here's to #20!