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

#21

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 happened....it 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

#20

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 surgery.....it'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 pushed......to 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!

Tuesday, May 6, 2014

Viva Las Vegas!

So, this blog post is a good two months past due. Honestly, my trip to Vegas seems like years ago, not just months.  Life has been insane, and thrown us more curve balls than I ever could have planned in the past couple months.  But that's another post that I'll get to soon.

Right now....Vegas!!

Oh my goodness, I had SUCH a blast!  Once we got all of our luggage (aka, crap) loaded up, we drove 4 hours south and stopped in St George to have lunch with Jenny, another of our friends from high school.  Lunch was delicious, and after a quick fuel fill-up we were on our way again.  



Now, Vegas is about a 6-hour drive from Spanish Fork, and being that it was my vehicle we were taking, I drove the entire way.  I was doing just fine, and have driven long distances before, so I didn't think much of it until we got out of the van at our hotel.  My left leg, with my AFO, was so insanely swollen that it was hard even getting the AFO off. My back was also killing me.....thank you, scoliosis.

Anyway, we got settled into our super-nice room for a bit, and got all ready to hit the town for the night.  We had a super delicious dinner at The Steakhouse at Camelot in the Excalibur.  So.  Delicious.  Oh, and as a side note, when driving down the strip at night, especially during rush hour, give yourself A LOT of extra time to get where you're going.  You'll thank me for this advice later, I promise.

After our super yummy dinner, we headed off the strip to the Red Rock Hotel & Resort to go bowling.  They have the largest bowling alley in Las Vegas, and it definitely did not disappoint!  We bowled 2 games, and had a blast!  








We started our Saturday morning off with a nice, peaceful trip to the Las Vegas LDS Temple.  We finished up there around lunch time, and headed down to the south end of the Strip to the gigantic outlet mall.  We snagged some lunch, and then hit the mall to do some shopping.  This is where my decision to bring my wheelchair with me after all came in super handy!  All of the travelling and exhaustion from the day before hit me full force while at the outlet mall, and my amazing friends were more than willing to push the wheelchair through the crowds of people.  After the outlet mall, I was then pushed around M&M World and the Coca-Cola Store, both of which made me feel really claustrophic. It was so crowded!  Despite the claustrophobia, and the fact that the main elevators were having problems, it was much easier being in the wheelchair than worrying about losing my balance in the middle of the throngs of people.

After our shopping excursion, we rushed back to our hotel to freshen up a bit, and then navigated down to Treasure Island to see "Mystere" by Cirque du Soleil.  Another CMT-related trick I've learned came in super handy at this point.  Whenever I'm vacationing somewhere new, I do a lot of research.  I research things like where the closest parking lots are, if there are lots of stairs, valet parking, etc.  If I can minimize the amount of time on my feet, even by just a little, it will save me in the long run.  Anyway, back to the show.... We were running a little late due to traffic and me taking a wrong turn, so we were lucky that we knew exactly which parking garage would put us right by the theatre.

For anyone who has never seen a Cirque show.....go do it now!  Mystere is on the cheaper side of their shows, and we got some cheaper seats, so we weren't entirely sure what to expect.  It was absolutely astounding!!  I can't even describe how cool all of the stunts were, and they just kept getting more amazing as the show went on.  And honestly, I really enjoyed our cheap seats because it gave us a view of everything!  So. Freaking. Cool.

After the show, we headed downstairs to the buffet for dinner.  I think that everyone's favorite part was the dessert bar....we got cotton candy!  On our way out of the hotel, we popped into a gift shop really quick, and had a little too much fun playing with all of the pirate stuff. (We were most definitely hopped up on sugar!)  Once we left the hotel, we drove all the way to the south end of the Strip, took a picture at the Las Vegas Sign, then drove all the way back to the north end and our hotel.





Sunday morning, we kind of took our time getting ready and getting out of the hotel....none of us were super anxious to get home!  3 of us had quite the entertaining time loading all of our luggage into the luggage carrier on top of the van, so much so that one of my friends had to climb up on top of the van, eliciting very strange looks from the other people in the parking lot.  We encountered a lot of backed-up traffic in the canyon outside of St. George, but other than that, our trip home was fairly smooth.  We had a late lunch in St. George, and stopped in at Dairy Queen in Beaver for ice cream and a picture on the giant chair.





It was seriously such a fun and much-needed getaway.  I got to spend some quality time with my besties, get some sunshine, and recharge my batteries a bit.  We're already talking about our next girl's weekend, and I can't wait!



Saturday, February 15, 2014

Five More Days....

Five more days.....that's what I keep chanting to myself.  Five more days, and I'll be enjoying the beautiful sunshine here:




Vegas, baby!  Oh, I seriously can't wait!  I get to enjoy a quick, kid-free, girl's weekend with some of my best friends from high school.  We'll see a show, see some sights, and definitely eat some delicious food.  I've been counting down to this for weeks....I need me some vitamin D!

Here's the problem...travelling always makes me a bit nervous.  I think that anyone who has CMT, or who has traveled with someone with CMT, will understand this feeling.  Will places be accessible?  Will there be adequate handicap parking? Will I have to walk a great distance, or stand in a forever-long line to get to do/see the things I want? 

The last time I went to Vegas, I took my standard wheelchair, and my sweet husband pushed me around everywhere we went.  (He's a total catch, right?)  And, it about killed him.  It was a lot of pushing.  I've decided not to take the wheelchair this time around, and though I'm firm in my decision, I still worry about the toll this choice will take on me.  My pulled quad muscle still isn't fully healed, and I've developed a fairly painful callous on my left foot where I wear my AFO.  To say the least, I'm a bit sore by the end of the day.

Anyway, I'm trying really hard to not worry about things.  Don't want to let CMT get in the way of my fun, right?  Honestly, I can't wait to get away with these ladies....a great time will definitely be had!  Wish me luck!

Monday, February 3, 2014

My Apologies

Wow....has it really been that long since I posted?! I thought it had just been a couple months, but over a year?  I couldn't believe it.  I guess that blogging took a big back seat to everything else that's been going on.  For those (very few) of you who may still follow this blog, I'm trying to be better!  No big promises, though.

Ok, time to play some catch-up.  Here's my amazing, fun, crazy family:


Seriously, when did they all get so big?!  Tyler is 10 now, Kaiden is 8, Addison will be 6 in a few weeks, and Alexis is almost 3.  They are all such amazing kids....so smart, funny, and creative! (And yes, I know I sound totally biased.)  Some days it's hard to keep up with all of them and their never-ending energy, especially with CMT, but I do my best.  Zuke and I just celebrated our 6th wedding anniversary!  It seems like we've been together a lot longer, but in a good way. LOL.

Speaking of my CMT, I seem to be at a plateau for now. (Knock on wood!)  I started having some hip problems late last spring, and found a new hip specialist that I went and saw.  I'm usually a bit wary of new doctors, but I actually really liked him.  He took the time to explain every little thing to me, and helped me come up with a plan to try and postpone the inevitable hip replacement as long as possible.  We decided to try a cortisone shot into my hip joint, to see if that would relieve the pain.  Oh my goodness, that thing was miraculous!!  The doctor said I could come back every 3-4 months if needed....this one lasted 7 months!  I just went back in for another shot, and I'm hoping it lasts as long as the first one.

In other news, I just signed up for my very first gym pass!  I'll admit that I've always been intimidated by going to the gym.  Not just by all the skinny, buff people, but because there are quite a number of things that I am unable to do at the gym.  Luckily for me, I have a great friend who is helping me stay motivated, and helped me realize that it's time I get in shape for myself.  I haven't been too many times yet, partially due to an aggravated quad muscle in my knee, but I'm so excited to start this journey!

Well, that's how my CMT is in a nutshell.  There are so many other things I could write about right now, so many other things that have been going on, but I'll just leave it at this for now.  Hopefully you will hear from me again, soon!

Thursday, October 18, 2012

Positivity


"Correction does much, but encouragement does more. " - Johann Wolfgang von Goethe

I don't think that it's a secret to anyone that us CMT-er's have our days where we feel down and depressed.  Gosh, sometimes it may be more than one day, or a week, or more than that.  It can be normal for anybody, especially someone with a chronic illness.

The one thing that I believe is THE most important asset that we can have is a great support system.  I don't think I am alone in this belief!  I have been extremely blessed throughout my life and struggle with this disease to have an amazing support system.  Wonderful and supportive parents, siblings, spouse, in-laws, extended family, friends, and even my own children.  All amazingly wonderful people who have always been there for me.  They have adjusted how things are done around me, and make minor changes and accommodations without question or hesitation.  And, most importantly, they have always been there to lift me up when I'm feeling down.

I remember the day I found out that my then 6-week old daughter also had CMT.  Even though I had suspected it even before she was born, I broke down in inconsolable tears.  My husband was right by my side, and my parents both rushed to be there to calm me and tell me that things would be okay.  When my husband hasn't been able to attend important appointments with my, another family member has always stepped in to be with me.  When I was 14 years old, and about to go in for a rather big surgery, 6 or so of my best friends gathered together one weekend in support of me.  When I'm having a physically rough day, one of my best friends, who coincidentally lives right next door, is always there to step in and give me a hand.

Support systems like this one are vital, and for me, essential to getting through my day-to-day life dealing with CMT.  But one part of that support system has not been mentioned....supportive and understanding doctors.  I've heard stories and had experiences on both sides of the coin.  Amazing and positive doctors, and some not so much.  So what do you do when a physician can't offer you the emotional support and positivity that you need?

I had one such physician, we'll call him Dr. R, who I had seen since I was about 14 years old.  I always really liked Dr. R.....he was funny, blunt, and reminded me of Danny Devito a little bit.  When I was 16 and had my learner's permit, I accidentally ran my mom's car into the cinder block wall in his parking lot.....and he teased me about it for years.  He always joked around with me before surgeries, always asked about my kids, and knows very well how much I despise getting stitches removed.  I trusted his opinion when I trusted nobody else's, even my own.

Earlier this year, I went and visited Dr. R for a problem with a callous on my foot.  We were chit-chatting as we usually do, and I began expressing my excitement about starting my support group here in Utah.  He inquired a little more about it, and I began sharing with him all of the research that is being done, and how a cure is believed to only be a few years out.  This is something that I'm very excited and passionate about, and I had assumed he would be, as well.  His response?

"Well, good luck with that.  I wouldn't count on a cure happening during your lifetime."

Wait, what?!  I could not believe what I was hearing.  I'm not sure if he saw the incredulous look I was giving him or not, and I really didn't know what to say.  How could this doctor that I'd put my emotional and physical trust in for 16 years have zero hope?  I left his office that day feeling very defeated.  I spent a lot of time thinking about that experience, and came to the conclusion that I would not be going back to see Dr. R.  I don't think I could trust someone again who has such a negative attitude toward this disease that I struggle with every day.

I've heard similar stories from other CMT-ers, and those stories always make me so sad.  We trust our physicians to have the answers and solutions for our physical health, but we also trust them with our emotional health.  For instance, my daughter's orthopedic doctor is one of the funniest, most positive people I have ever met.  My daughter actually gets excited to go see him, because he is so focused on making the visit a positive experience for her.  Having great physicians in your support system, I believe, can make or break your own attitude about dealing with this roller coaster ride that is CMT.