Friday, September 30, 2011

Bye-Bye Bone Spur!

Today was surgery day.  Happy day!  Zuke and I left around 8:30 this morning to make the half hour drive to the hospital.  Well, it's usually a half hour drive.  Thanks to the lovely construction on our exit, it took us 20 minutes to just get onto the freeway.  About ten minutes after we were supposed to be at the hospital, I get a call from them making sure I was coming. LOL


The one bonus to being a little late is that I only waited in the waiting room for about two minutes.  They took me back, asked me my name and birthdate about 27 times, and got me ready.  Then came the worst part of the whole thing....getting an IV in.  My theory is that I've had so many IV's in my life (no, really....I've had my share and probably about 50 other people's share) that my veins protest every time I need an IV.  It's amazingly rare for a nurse to get it on the first try.  It took 3 different nurses 4 tries to finally get one in.  The bruises on my arms make me look like a druggie!


In any case, the got the IV in, I talked to the anesthesiologist and the doctor, and then they gave me the good drugs.  They must have taken effect quickly, because I don't even remember kissing Zuke as they wheeled me out of the pre-op room.  The last time I had surgery, I was alert enough to move myself onto the operating table and listen to them set the radio station (to my favorite station - this is the sole reason I trust my doctor to operate.  Hee hee!).  


Zuke says it was about 50 minutes or so from the time they wheeled me in to the time they wheeled me to a recovery room.  Coming out of the anesthesia for me is always an adventure. (I won't share what happened when I had my emergency c-section....I need to maintain a little dignity.)  This time, I must have been feeling pretty okay, because when the nurse offered me a drink, I immediately asked for a Dr. Pepper.  I ended up settling for grape juice (the smarter choice).  I remember just feeling comfy, and then I'd suddenly pop my eyes open and become very alert.  Then I'd get all comfy and sleep a bit more.  They had these new papery gowns, that are equipped with an air bladder thing.  They can hook a tube up to the air bladder and blow warm or cool air into it to help regulate a patient's temperature.  I hated it before surgery because it felt hot and sticky (paper stuff doesn't breathe very well), but then I was happy for it when I got cold in recovery.  However, I think that's also what eventually woke me up for good....I'd had warm air blowing into the gown, as well as three blankets on me.  It was hot!


So we got the blankets off, sat me up, took the IV out, and then I noticed it....the BRIGHT green cast on my foot.  I was confused.  I had told the doctor I wanted blue.  Then I vaguely remember the nurse asking what my favorite color was while wheeling me to surgery.  Yes, green is my favorite color....but not THIS green.  Oh, well.  It looks awesome with my bright purple toenail polish!  LOL


Anyway, we got home around 3 this afternoon.  My foot was still numb, so I could walk on it without much pain or discomfort.  We picked up  my traditional "post surgery/pregnancy/sickness sushi", which is a must!  I've spent the majority of the rest of the day lying on the couch.  Addison has been such a sweetheart, constantly coming over and asking if the operation made my foot all better.  I did stand up a few hours ago to the painful realization that the pain block from the surgery had worn off.  Ouch!  Thank heaven for pain meds!


All in all, I'm doing really well.  I played Rock Band for a while with Zuke and my mother-in-law, and now I'm lounging in bed.  Honestly, I'm really happy just to have it done.  I should be in a cast for 2-3 weeks, and then everything should be pretty much healed up.  Oh, and I got to bring my bone spur home. :)

Thursday, September 29, 2011

I'll Stand Back Up

Anyone who knows me well, knows that when I'm alone in the car, the radio is cranked and I'm belting out a song.  I'll occasionally do it with other people in the car, but not usually.  It's my "reset", my way of venting, my therapy.  I don't care if people give me weird looks....I'm in my own little world.


Earlier tonight, I had one of those rare moments while I was driving by myself.  (With 4 kids, it's VERY rare!)  I was thinking about a lot of CMT-related stuff.....my surgery, the benefit dinner, Addison's appointment at Shriner's, etc. While lost in thought, this song shuffled through my Ipod.  Now, I've loved this song for years, and it's had different meanings to me at different times of struggle in my life.  I naturally started singing along, and suddenly it took on a different meaning.


It became me singing about CMT.  About not letting this disease run my life.  About standing back up after the hard days and the trying times.  After it played through the first time, I played it again.  And again, and again, and again....the entire way home.  The first time, I cried.  It was refreshing to let some emotion go.  But by the time I pulled into my driveway, my tears were dry, and it became more of an anthem.  An anthem of hope, strength, being human, and the fight that we all have within us.  And I wanted to share it with you.




Wednesday, September 28, 2011

Date Change!!

Due to some scheduling problems at the venue, we had to change the date of the CMT Benefit Dinner.  The benefit will now be held on Saturday October 22.  Same time, same place, same awesome cause!


I'm getting super excited about all of it!  We're working on our gourmet menu (seriously, you DO NOT want to miss this food!) and collecting donations for the silent auction.


Don't forget to purchase your tickets by October 17th!  Hope to see you all there!

Tuesday, September 27, 2011

Quote

You never know how strong you are until being strong is the only choice you have.

Monday, September 26, 2011

Realization

I came to a stunning, yet exciting, realization today.  I had just picked Tyler up from piano lessons, and we were stopping at the gas station for a treat.  I opened my door, stepped out, and walked up onto the sidewalk.  As I stood there waiting for Tyler, it hit me.  My foot didn't hurt.  At all.  I hadn't had to pause when standing up out of my van to compose myself because of the pain. I hadn't had to push thoughts of searing pain out of my mind to walk 5 feet.


I got a little lost in my excitement for a moment, and Tyler was already impatiently holding the door to the gas station open for me.  (He REALLY wanted those M&M's!)  It was just such an exciting thought!  I honestly can't remember the last time I could even stand up without wincing in pain.  I can actually walk around my house and do some cleaning without wanting to cry.  It's so awesome!!!


My podiatrist said this would likely happen....that he would remove the callous and the pain would eventually go away.  At that point, he said, I could decide whether or not to have this bone spur removed.  What's the point in doing surgery if you're not in pain anymore, right?  I definitely don't see it that way.  You see, he also said that if I didn't have the spur removed, the callous would most definitely come back over time.  Maybe if all the searing pain of the past few months wasn't so fresh in my mind, I'd consider that.  But there is no possible way that I would even chance going through that again.  No. Way. At. All.


So, here's to pain-free steps when we can get them!

Sunday, September 25, 2011

Sore

Man, I am so sore.  And tired.  I guess having food poisoning will do that to you.  It was a really low-key day today, so that helped.  Just did a lot of relaxing.  The really nice thing is that my foot pain is almost non-existent. Yay!

Anyway, like I said, I am majorly wiped and have to get up early to head to the doctor with my husband, so I'm hitting the hay.

Saturday, September 24, 2011

Blech

Food poisoning tonight.....I'll be back tomorrow.

Friday, September 23, 2011

Questions

Alright, we're in the home stretch!  Only one more week of CMT Awareness Month!  What have you done to spread awareness?  Who have you told about CMT this week?

My friend, Lenka of Lenkaland, agreed that it would be fun to do a question and answer post, with questions from all of you!  Wouldn't that be a great wrap-up to this awesome month? I think so!

So, this is how it works.  Leave me a comment on here or on facebook, or send me an email with your question(s) about CMT.  It can be any type of question, from facts about CMT, to personal experiences, or to how we handle certain situations.  Nothing regarding CMT is off limits!  Then next week, Lenka and I will both answer your questions, so that you can get more than one viewpoint on the subject.  Answers will be posted on both our blogs, and possibly answered on Lenka's Disability Community Podcast.

I am so excited for this!  So send in your questions.....I can't wait to read them!!

Thursday, September 22, 2011

Better

I felt a lot better today.  Still wearing the cam walker, but didn't have to use crutches at all.  Yay!  I can still feel some irritation in that spot, but no major pain.  I am totally ready to be out of this dang cam walker, though.  It totally changes the way that I walk, resulting in heel pain, hip pain, and some muscle pulling in my lower leg.  I'm not sure how I wore a cam walker for about a year straight before!  It makes me very grateful for my AFO.


Surprisingly, though, I'm still amazingly exhausted.  I have so much that I want and need to get done before surgery next week, but I just haven't had the energy or motivation.  Hopefully I'll be feeling a lot better by this weekend and can actually be productive.

Wednesday, September 21, 2011

Busy, Busy, Busy

So, I've been busy all night stuffing and addressing envelopes with invitations for my CMT Benefit Dinner.  Want one?  Let me know!


Anyway, I am totally wiped, so this post will be short.  I only had to use one crutch today, so that was nice. I didn't feel quite as useless today as I did yesterday.


More tomorrow!

Tuesday, September 20, 2011

Long Day

Wow, today was an insanely long day.  Longest I think I've had in a very long time.  Last night when I was getting ready for bed, I noticed that the spot where that callous had been cut out had bled.....a lot.  Soaked completely through the bandage and my sock.  Zuke and I cleaned it up, put some antibacterial spray on it, and wrapped it up for the night.  Around 1:30, I woke up with my foot throbbing like crazy.  I took the wrap off, thinking that relieving the pressure would make it stop hurting.  Nope.  No such luck.  I spent the rest of the night tossing and turning because my foot hurt so bad.


I got up this morning, put on my AFO, and stood up to walk to the bathroom.  I took one step on my foot, and pretty much crumbled back onto the bed in tears.  It felt like someone was stabbing a sharp knife straight into my foot.  Walking on it definitely was not an option.  I put a call in to my podiatrist to see if there was any way he could squeeze me in sooner for surgery.  I got a very quick "no" answer, but the nurse did say that they could call in a prescription for me, so I took that offer.


This next part is testament to how much it pays to know the right people.  One of my mom's neighbors is the office manager to one of the biggest groups of orthopedic doctors in the state, so she put a call in to him.  I originally had an appointment scheduled with Dr. F for the middle of October, but this friend of my parents' got me in at 1:00 this afternoon.  Dr. F is, according to my insurance, the only foot and ankle specialist in the county, so I was pretty excited to be seeing him.  I went in with a single mission - get rid of this bone spur and stop this excruciating pain.  I got a lot more than that!


Well first off, he told me that apparently the callous was what is called a "core callous", meaning it wasn't just on the surface.  My podiatrist most likely dug a little too deep to get it out, which is what made it bleed.  He said it was most definitely inflamed, but not infected, and should feel better in a couple days.  He also gave me a cam walker to wear until it felt better so that there wouldn't be as much pressure on that spot.  Unfortunately, his available surgery date would be two weeks later than I already have scheduled, so I'm just keeping with my previous one.


Then came the crazy part....well, to me at least.  He started talking about my CMT, and showed me on all my x-rays what could/should be fixed. He talked about what could happen if we didn't fix certain things, and how long I could possibly go without doing anything.  Keep in mind that I haven't had any big surgery for over 4 1/2 years, so this was all a bit overwhelming.  I think I would have freaked out a bit, except that I have never been to a doctor who seemed to know as much about CMT as this one.  He was able to look at my x-rays and pick out the surgeries that had already been done.  My husband asked him if he'd worked with CMT patients before, and he said that he'd worked with quite a few.  He knew his stuff.


Needless to say, we left that appointment with my head spinning.  We have a surgical plan for my left foot (which is the worse of the two), even though it will be at least a year before I can afford the recovery time.  He also wrote me a prescription for an AFO on my right foot as soon as I feel like going to get one.  Having a doctor tell me that I will definitely need surgery and another AFO was kind of a hard pill to swallow.  I knew that eventually I'd need more surgery and another AFO, and maybe I'd just been avoiding the reality of all of it.  Luckily I have some time to let it all sink in.


In any case, it was a good visit.  I'm still hopping around on crutches.  I took a pain pill a little while ago, and while my foot is no longer in constant pain, it only takes a little pressure for all the pain to come raging back.  Hopefully another pill before bed will help enough that I can actually get back to being useful again tomorrow.

Monday, September 19, 2011

Number 14

Well, I went to my podiatrist today, and things were just as I expected.  I have a lovely little bone spur on the bottom of the outside of my left foot.  It's created a deep callous, which is what was causing the pain.  The doctor said that the bone spur has likely been there for a while, due to the shape of my foot.  He took the callous off, and told me we could just wait and see if and how quickly the bone spur would cause the callous to come back.  Yeah.....right.  I told him if there's a chance that it will happen again, I don't want to take my chances.  The last few weeks with this pain have been hell.


So, I did it.....I scheduled surgery #14.  The podiatrist will be cutting off that annoying bone spur on the 30th.....which still seems like ages away!  At least there's a light at the end of the tunnel, right?

Sunday, September 18, 2011

To-Do

I had an absolutely lovely weekend getaway with my husband.  We relaxed, ate some yummy food, and did some shopping....all minus the kids!  Except for the chronic foot pain, it was the perfect time.


And, as usual, I get back from vacation and have a million things to do.  I have a list a mile and a half long of things to do this week, and a lot of them are CMT-related (at least, in my book).  So, I thought I'd share with all of you my to-do list for the week.



  • Get in touch with the event planner at the Blue Lemon to confirm details for our fundraising dinner.
  • Design posters, fliers, and webpage for fundraiser, and then ADVERTISE!!
  • Begin getting donations for silent auction.
  • Write guest blog post for the Hereditary Neuropathy Foundation website.
Ok, so maybe that doesn't look like a long list....but combined with all the personal stuff that I didn't list, it's going to be a busy week.  I'm hoping that the appointment at the podiatrist tomorrow goes well, and I can get some kind of relief from this pain.  That would make my week go so much more smoothly!  Wish me luck!

Saturday, September 17, 2011

HNF Article

The article that was written about me on the Hereditary Neuropathy Foundation's website was published today!  I feel so incredibly flattered by this article.  I have lots of thoughts to write about it, but I'll save it for another time.  And, as promised, here is the link:

Friday, September 16, 2011

A Break

I am currently on a much needed weekend getaway with my adorable husband up in Park City, so today's post will be short and sweet. I got my appointment with my podiatrist moved up, which is good since this foot pain is so bad. In thinking it's a bone spur, and if so, I'm going to have it removed asap. Yay for another surgery! I spoke with Keri from the HNF again briefly today. I was given my topic for my guest blog post, so that will be ready in the next couple days. Also, my article on HNF's website should be up very soon! I'll post links to those as soon as I have them. Happy weekend!

Thursday, September 15, 2011

Save The Date!

I am so beyond excited today!  I finally got confirmation that I will be able to book the location I want for my CMT fundraiser in October!!  *Squeal!!!*

I still have to nail down all the tiny details (hopefully this weekend) before I share them all, but I'll tell you what I do know.  The fundraiser will be held on Friday October 21st at the Blue Lemon Restaurant in Highland.  There will be a 3-course plated gourmet dinner, live entertainment, a presentation on CMT, and a silent auction.  I will post all the information here on my blog as soon as I have it!

I have so much to do!  Invitations, posters, menu, etc.  I am so excited to be able to raise money for the CMTA and especially to raise awareness for this disease.  Look for more information coming in the next few days, and save the date!  I hope to see lots of you there!

Wednesday, September 14, 2011

General Randomness

I really don't have anything going on today that's worthy of it's own post, so you guys get a bullet-pointed list of random things today.  Ready?  Here we go...



  • My foot still hurts.  A whole freaking lot.  Tried putting some mole skin on it today, and it did nothing. *Sigh*  Only 11 more days until I can go see the doctor, but I'm now worried that he won't be able to do anything.
  • I spoke with Keri from the Hereditary Neuropathy Foundation this afternoon.  She is so much fun to talk to! (Hi Keri!)  Apparently, an article is being done about me for their website, and I get to do a guest blog post for them as well!  Now, I just need to decide what to write about.  Any suggestions?
  • There are 24 (slippery) stairs down to where Addison's dance class is held. That's a lot.  More than twice as many as there are in my house.  I dread having to deal with them every week.
  • Speaking of dance class, Addison adores it.  She's slower and not quite as coordinated physically as the other kids, but she doesn't notice.  Plus, she just looks so cute in her purple tutu!
  • I suddenly became very hyper-aware of my foot drop today.  I was walking out of JCPenney into the parking lot, and for some reason it was really prominent, at least to me.  I know it's always been there, but I guess I usually just don't pay much attention to it.
  • I really wish that I could stand to have other people touch my feet, because a foot massage and/or a pedicure would really rock right now!
Ok, I think that's about it for today.  I'm tired, and not just physically.  I have a lot of stuff to do around the house tomorrow before my husband and I go away for a night, so I'd better get to bed.

Tuesday, September 13, 2011

Support Group

Today was a pretty quiet day.  I did some laundry, finished an amazing book, drank a Dr. Pepper.....you know, the good stuff.  And in the middle of this quiet day, something really cool happened.


I applied to be the facilitator of a new CMT Support group here in Utah!


I am SOOO excited about this opportunity!  And, admittedly, a little bit nervous.  This is a huge undertaking, but I feel confident that I can do it.  The closest support groups to here are either in Denver or Las Vegas, which is just not close enough.


Growing up, I never knew of anyone else who had CMT.  I never admitted it to anyone but my close friends, and even then we didn't really talk about it.  The internet wasn't what it is today, and so there wasn't the availability of information or connecting with other people.  Nobody else in my family has CMT, so aside from the doctors I'd see, there wasn't anyone else who seemed to understand what I was going through.  It was a lonely, frustrating circumstance.


And now, I've had the opportunity to connect with so many amazing people who are dealing with CMT in their lives in one way or another. Some of them in my own area!  We've been able to share stories, ideas, and support.  I don't feel like I'm alone anymore, and I want to be able to give that opportunity to everyone that I can!


None of the details have been decided yet (dates, location, etc.), but this is a start!  I am so excited about this new adventure!

Monday, September 12, 2011

Pain

First off, I have to give a gigantic THANK YOU to my husband, my best friend, and my sister for their wonderful posts!  They are all huge blessings in my life, and give me a lot more credit than I probably deserve.


So, I've been having a hard time deciding what to blog about today.  On my family blog, I have a tendency to avoid blogging when things aren't going so great or we're having a hard time with one thing or another.  I like to keep things light and happy.  And somehow, that same feeling has trickled over onto this blog.  I know I'm supposed to write about the ups AND the downs of everyday life with CMT, but I don't enjoy writing about the downs.  I don't like dwelling on them much, and I don't want this to be turned into a pity party or anything.


But the past few days have been a major down, and this "downer" seems to consume so much of my life, that there's not much else that's CMT-related to blog about right now.  So, unfortunately, you get to hear about the downside today.


I've never been able to walk or stand for long periods of time, and I've mentioned before about the burning, excruciating pain that I experience when I do stand or walk for too long.  Usually that pain goes away with some painkillers and a good night's sleep.  Well, not this time.  For the past week and a half or so, my left foot has been in a constant state of pain every time I stand up or take a step.  I can usually find some relief when I take my AFO off, but not this time.  And unfortunately, that numb feeling that usually comes after a while and offers a bit of relief is nowhere in sight.


I've tried to take it easy the past few days, but to be honest, that's not really easy to do with 3 kids.  I still have things to do at home, errands to run, and just the day-to-day things to do.  I find myself lying in bed each morning dreading having to get up and deal with the pain all day.  And then I find myself in bed every night, hating that I didn't get everything done that I needed or wanted to because I was in so much pain.  It feels like the pain is consuming my days, and I can't stand that.


I finally made a call to my podiatrist today, but he can't get me in for two more weeks.  That two weeks seems like an eternity right now, but I know that it will come faster than I think.  It's hard not to get depressed and down about it all right now, but I'm amazingly thankful for family and friends who continually build my spirits up.  With their help, I'm pretty sure I can make it through.

Sunday, September 11, 2011

Where Were You?: Remembering 9/11

As I contemplated what to write about on this blog today, I was a bit conflicted at first.  I really wanted to write my thoughts and feelings about what happened on this tragic day 10 years ago, but then I thought, "This is a CMT blog....my post needs to be about CMT."  It was then that I realized that in a small way, the two actually connected.


I will always remember where I was on the morning of September 11, 2001.  I was on my way to Primary Children's Medical Center to have the screws and plates removed from my hip, which had been reconstructed the previous year.  The funny thing about it, to me at least, is that I originally was not scheduled to have surgery on that day.  I had bumped up the surgery because the screws were causing me a lot of pain.


So, I remember being in the car with my mom, listening to the radio, when suddenly the music was interrupted by reports that the a plane had crashed into the first tower.  Nobody knew at the time what had caused that to happen, and I remember feeling shocked, and wondering how someone could "accidentally hit something that large".


We reached the hospital before the second plane had hit, and I got sent to my surgeon's office for final x-rays before the surgery.  The nurse took my x-rays, and then I sat in the waiting room waiting for the copies to take down to the operating room with me.  Of course, the tv channel was turned to a news channel, and that's when I saw that the second tower had been hit.  I remember a sick feeling in the pit of my stomach, knowing that this was no accident.  As I sat there wondering who could have done this and why, I watched both towers crumble to the ground. The whole hospital went silent.  Nobody said anything, and it seemed like nobody even dared breathe.  We had just witnessed one of the most horrifying things we would ever see in our lives.  


Unfortunately, I had to rush downstairs for my surgery, and left the television and the news behind.  My surgery didn't take too long, and I was in the recovery room about two hours later, slurping on a grape slushee.  Once I was coherent, I turned to the television again.  I had only been "out" for hours, but it felt like a lifetime of things had happened during that time.  The footage on the news was terrifying.  The reports of terrorists made my skin crawl.  


There was already talk of military reaction, of bombing whoever did this to us, of going to war and taking revenge.  I remember being worried for a good friend who was in the Marine Corps.  He had just been out to visit a couple weeks earlier, and was on active duty.  I couldn't get out of that hospital and home fast enough to call and get word from him.  We finally arrived home early in the afternoon, and as I was hobbling into the house on my crutches, he called.  I felt immense relief hearing from him, and felt the knot in my stomach loosen every so slightly.


I planted myself on the couch in our basement, and since I had been told to take it really easy by my doctor for the next few days, on the couch is pretty much where I stayed.  I watched all the news reports, which continued for days.  When my friends were done with work or school every day, they would come over to my house and join me.  I think that probably helped me the most.  I remember crying together over what we were seeing, and talking about how horrible this all was.  It was an interesting realization to us that this was our "Pearl Harbor".  This was a day that would be talked about and written in the history books, and we were there to witness it all.


The one thing that stands out in my mind the most, is watching a tribute in Nashville by a bunch of country music artists.  (Yes, I have CMT, AND I watch CMT. LOL)  I very vividly remember Martina McBride taking the stage, and without any accompaniment, singing the chorus to her hit song "Independence Day".  It was touching and emotional, and so poignant.


              "Let freedom ring, let the white dove sing,
               Let the whole world know that today is a day of reckoning.
               Let the weak be strong, let the right be wrong.
               Roll the stone away, let the guilty pay,
               It's Independence Day."


Some people may have forgotten over the past ten years what happened that day.  How it felt to see our homeland under fire, and know that so many lives were lost due to a senseless act. I pray for those who lost their loved ones on that day, as well as for those lost in our continuing fight for freedom.  I am grateful  for them, and I will never forget.

Saturday, September 10, 2011

A Sister's View

And now, for your reading pleasure, another guest post from my wonderful little sister, Whitney!  (Btw, I will be back to posting myself tomorrow, so be prepared!)

"Hello folks! I am Whitney, I’m Melissa’s younger sister.  She has asked me to write a little bit about my perspective of CMT having lived with Melissa while we were younger.  First off, let me get out in the open that there is NO better older sister than Melissa. She is an amazing person that is so willing to do anything (including answer my five hundred calls a day), and is so caring and so strong that CMT will never have a chance to ever run her life. Maybe slow things down a bit, but in the end she will kick it in the BUTT!!

 I still don’t fully understand everything about CMT, and I learn more and more about it the older she gets and the older Addison gets.  It is definitely different as a kid growing up with a sister with CMT because you don’t really know any different.  For all I knew, Melissa just didn’t like running around with me, or playing  sports as much as I did. It hasn’t been until recently that I realized it wasn't that she didn’t want to… it’s that she couldn’t. There is no question in my mind that God knew what child in the family was going to be able to handle the disease, He chose the right one.  Melissa has handled CMT the best anyone could.  I never remember her EVER complaining about having CMT. Whether it was the pain after surgery or the brace she wore, she never once said anything negative about it.


However, Melissa having CMT has led us to some amazingly fun adventures. Here are a few pluses we have been able to have:

  •        Close parking at stores
  •        Being able to ride the rides at Lagoon TWICE! (As a kid, I thought it was the coolest thing Melissa was able to get us on the rides, let alone let us go two times!)
  •         It is extremely entertaining for us and others when we go to IKEA and we have a massively long train (picture this: me pushing Melissa in a wheelchair, while she is pushing the shopping cart in front of her.) Great fun at IKEA weaving that around the aisles.
      CMT is something that needs more attention in the world.  I am glad that it is talked about more and the professionals are realizing that something needs to be done.  1 in every 2,500 is a very big percentage when you think of other diseases that happen 1 in every 10,000 or 1 in every 100,000.  The only thing I can hope for, for Melissa and Addison, is that someday (soon) there is treatment to help and hopefully someday a cure."

Friday, September 9, 2011

A Friend's View: CMT As A Teenager

Here is an amazing guest post by one of my best friends, Annalee of The Whims of Anna.  I'm so lucky to have such awesome people in my life!



"I have always known that my friend Melissa was an amazing woman. My first memory of her was when I was in 8th grade (she was in 9th) and we were both auditioning for a coveted choir position. She auditioned right before me and I put my ear to the closed door to try and hear if she was a better singer than me. Even though I didn’t know her name and never spoke to her, it’s hard to forget the girl with the leg braces and crutches (she had just had another surgery).

A couple years later when I was a sophomore in high school, Mel and I got to know each other through a mutual friend and we quickly became close friends. As a teenager, I hardly took a second thought to Mel’s CMT (it took me the longest time to even remember the name of her disease) but it was clearly evident that being a teenager with CMT was not an easy position to be in.

Mel couldn’t walk as quickly as the rest of us or dance as much as the rest of us did at the dances after the football games. She had multiple surgeries that left her wearing colorful casts and using wheelchairs and crutches. Overall, it made her constantly different and no teenager wants to stand out as being different. However, Mel was a trooper and you would never know that she sometimes wished to be like the 'normal' girls. Even though it sometimes killed her, she still went to dances, amusement parks and toured internationally with her choir. Despite the difficulties, I think CMT allowed her to discover her inner strength and helped her develop attributes of endurance and patience at a young age.

As her close friend, I benefited from the lessons she was learning and our friendship allowed me opportunities to experience new and difficult situations. I have fond memories of pushing Mel around in her wheel chair after one particular surgery. Her mother was always very distraught about her leaving the house with the rest of us teenagers, but I promised that I would bring her home safely. I learned how to fold up the wheelchair and fit it in my trunk, how important handicapped parking is, and how to give dirty looks to those people who thought we were just playing around on the store’s electronic shopping carts. I also felt the frustration when places were not wheelchair accessible. One night the two of us went to the mall and went shopping on the 2nd floor. When it was time to go home, the elevators were not working. The mall sat on a kind of hill and had outside entrances on both the 2nd and 1st floors. I hauled Mel outside in the dark and we took the very long, very steep sidewalk all the way around the mall to the other side where it met the ground where our car was parked. Let’s just say that’s an experience neither of us wants to relive!

Now that we are both adults, it is easy to see how having learned these life lessons at a young age has made a difference over the years. Melissa has proven that it is possible to take this 'liability' and use it to benefit the lives of all who are around her. I hope that other teenagers who find themselves facing the difficulties that CMT brings will also find the strength to face it head-on and smile in spite of the pain."

Official Declaration

Look what came in my mailbox today....





Yay!!!  I had almost given up on the thought that this would actually happen! Now, the State of Utah recognizes September 2011 as CMT Awareness Month!!



Thursday, September 8, 2011

A Post From The Hubby

Hi everyone! My name is Zuke and I'm Melissa's husband. When she told me she would be trying to post everyday for the month of September, she then invited me to contribute some posts as well. This isn't exactly normal for me; I don't think I've posted to our family blog in years and I only update my tech-site a couple times a week!

When Melissa and I first met, I learned very early on that she had CMT. She was very open about it and matter of fact, so I knew that it was nothing to really be bothered about (and frankly, not the scariest thing your new girlfriend could drop on you); "Sweetie, I have something I need to tell you. I used to . . . "

Knowing nothing about CMT (it's a country channel, right?), I immediately hit the internet to search for whatever info I could find. High arches? Meh, no big deal. Hammer toes? Better than hammer pants. Curvature of the spine? She looked fine to me! What the information didn't share with me, however, was the effect it had on a person's quality of life. Fast forward a few years, and it all seems second nature to me now; she will get tired faster than me, she won't be able to do everything I can do, she will try anyway, and she will feel bad about it.

It may sound as though I'm bragging, but house cleaning is not a difficult chore to me. Being raised by a German/Japanese parental double-team meant that you did what you were assigned and you did it FAST. Our kitchen takes me 20 minutes to spic & span. Our living room, only 10. And while I know she appreciates what I do around the house, I can always tell she feels guilty that I "had" to do it. The same chores take her much longer and end up sapping her energy in ways I simply can't imagine.

The guilt isn't just limited to house work; our daughter seems to be a living reminder to my wife as well. When we found out we were pregnant, the obvious question (other than "How do you raise a girl!?") was whether or not she would inherit CMT as well. With her previous child, Melissa had dodged a bullet that Addison would not be so lucky to avoid. When the test results came back that Addison had indeed inherited the disease, Melissa was beside herself. Looking back, I realize that I didn't react as much because I was pretty much clueless; I knew how Mel coped as an adult, but never knew of any of the pain she had as a child.

I think logically she knows that there's nothing she can do about having less stamina or Addison inheriting CMT. But at the end of the day, when she's physically exhausted herself trying to keep the kids from destroying the house or killing each other, when the wear of the day has ground her joints to a halt, that's when the real side-effect of living with CMT shows itself. The one Wikipedia fails to mention and most doctors who only treat your symptoms never know about:

The sheer emotional fatigue that the weakness, pain, and guilt has left you with . . . and the knowledge that it will be the same tomorrow.




Wednesday, September 7, 2011

New Friends

Today ended up a lot differently than it started. Thank heavens! I was trying to get out the door to take Addison to dance class, and it seemed like it was just one thing after another. Then, of course, we get stuck behind the driver who insists on driving at least 10 miles under the speed limit. I had found an elevator to take down to the basement to dance class (I had Alexis in the stroller with me), but before class was over, someone had shut and locked the access door to get back to the elevator to get upstairs. Lucky for me, two of the other moms offered to help get the stroller and carseat with baby inside up the stairs for me. I'm grateful for people who see a need and don't ask questions, but jump in to help.


In any case, by the time we got home, I was wiped. I put Alexis down for a nap, fed Addison lunch, and sent her to her nap as well. Then I planted myself on the couch with my Dr. Pepper and a rerun of Grey's Anatomy, content to spend a chunk of my afternoon vegging. That is not what ended up happening at all.


I found out today that the newspaper article in the Daily Herald was read by a couple other CMT patients in my area, and both of them contacted me! I was so excited, because I have never met another CMT patient face-to-face! Ann contacted me through Twitter (which I admit I hardly ever use), and we exchanged a couple emails today. We discussed the possibility of putting together an official support group in our area in the near future, which I am so pumped about! Karri read my article, and then found me on facebook. We actually spent half an hour chatting on the phone about our symptoms and how CMT affects us. It's always amazing to me as I chat with people how differently CMT affects each of us, but yet how so much of it is the same. The two of us also talked about the possibility of a support group, and will be meeting up for lunch or dinner soon.


I got off of the phone with Karri today, and had to fight back the tears. For years I have felt so alone with this disease, having never been able to talk to other people who have gone through or are experiencing the same things as I am. I am so grateful for all of the people I have had the blessing of coming in contact with this past month. Michelle Hayes, Lenka, Michele, Jeana, Karri, Ann, and everyone else I have talked to or will get the opportunity to talk to....THANK YOU! Thank you so much for being willing to share your stories and your lives. Thank you for being such an amazing support. I hope that I can return that friendship and support to each of you!

Tuesday, September 6, 2011

Not Much

I don't really have a lot to blog about today.  I spent most of the day in a t-shirt and sweats lounging around on the couch.  I think I caught the little stomach bug that Addison had over the weekend, and I frankly felt like crap today.  On the up side....all the lounging around I did meant that my feet and hip didn't hurt much.  The couple trips up and down the stairs I took to do laundry weren't too fun, but it wasn't bad.  Here's hoping that I feel better tomorrow and can be a bit more productive!

Monday, September 5, 2011

Mobility

Today has actually been a pretty calm day, which is nice, considering it's a rare day off for my husband.  We had all these things on our to-do list....boring things like laundry, cleaning the garage, grocery shopping, etc.  We bagged most of that list, to be honest.  I am a firm believer in the occasional need for a real day off.  We had a late sushi lunch (yum!), stopped and bought some fresh peaches, picked up my son from his dad, and stopped to pick up my new HD camcorder (which I will be using to record my videos for the CMTA site! Yay!).


When I stopped to pick up the camcorder from my sister's house, we decided that since we both had to run to the grocery store, we may as well go together. That way, Zuke and I wouldn't need to drag all of the kids with us.  I did, however, take Addison because, as mentioned previously, she has quite the affinity for the grocery store.


We made the decision, as usually happens to take my vehicle.  Why?  Because I have the handy dandy handicapped license plate, that's why!  It's amazing how not having to walk that extra 10-20 yards makes such a difference, but it does. I also opted to use the motorized cart while shopping.  Usually, if it's a quick in-and-out trip for just a few things, I'll just push a cart.....the exercise is good.  But this was an enough-food-for-two-weeks type of trip, so the cart was necessary.  I have to say, this was probably the first trip where I've used that cart that I haven't gotten some sort of funny look from another shopper.  I've found that when I wear shorts or capris so people can see my AFO, I don't get as many funny looks.  Or when I was pregnant, people never seemed to question it.  


Once, a few years ago, I was at a large chain store (name not mentioned) after I'd had foot surgery.  I had a cast on my foot, even.  In any case, I was motoring around the store doing my shopping, and some guy came up to me and started chewing me out.....loudly!  It took me a few seconds to figure out what he was upset about....he was accusing me of playing around on the motorized cart, and therefore making it unavailable for someone he was with (his wife, I think?) to use.  I stayed really calm, surprisingly, and listened to him rant.  As he's going on and on, my friend came walking around the corner carrying my crutches, and by that time I had pulled up my pant leg enough that my cast was clearly visible.  A small crowd had gathered by this time, and were all staring at him incredulously because they had seen what was actually very obvious.  Seriously, this guy was so oblivious....it's kind of funny thinking about it now.  Finally, one guy standing in the small crowd called the ranting guy out, making him stop and pay attention.  This guy's face turned bright red, and a few people in the crowd started snickering.  He immediately spun on his heels and hurried off, muttering some obscenities to himself.  The crowd dissipated, and an employee of the store came up to apologize to me.  I told him not to worry about it, but that the store should really consider investing in some more motorized carts (I think that they only have 2....and it's a large store) so that everyone who needed one had one available.


I've found myself more and more lately only shopping at the large stores that have motorized carts available to their customers, and ample handicapped parking.  It's hard sometimes dealing with the stares and questioning glances from people, but I'd much rather shrug those off than barely be able to walk back to my car after a shopping trip.  

Sunday, September 4, 2011

The Aftermath

So yesterday, I believe that I more than made up for skipping out on doing any shopping on Friday, as I'd promised Addison we'd do.  If my calculations are correct, we hit up 12 different stores yesterday.  Granted, a few of them I was only in for about 5 minutes, but still.  That's probably the most I've been to in a day's time since I was a teenager and hanging out at the mall was the cool thing to do.


We got a lot accomplished, picked up some fun items, did a little window shopping, and had an all-around good time with each other.  However, a little more than halfway into our shopping marathon, I started feel that all too familiar pain.  It starts like little pin pricks on the bottoms of my feet.  Then my hip starts aching, the muscles tighten up, and I can feel the joint grinding with every step I take.  Then the pin-pricks change to nails.  But not just nails....flaming hot nails.  I feel like I'm walking on a bed of flaming hot nails.
After a while, the pain in my feet starts to numb.  And while I'm glad that the fiery pain is gone, the numbness is almost more difficult to deal with.  It's like trying to walk when your legs or feet have gone to sleep.  


In any case, I powered through, and we had a great time. We decided to stop at one of our favorite restaurants for a nice, sit-down dinner.  I had a chance to relax and rest, which was nice.  Well, nice until I had to stand up and walk out to the car.  It was like the entire day's worth of pain all came flooding back into my limbs, and that 30-second walk out of the restaurant to the car almost had me in tears.


Now it's a day later, and I'm still recovering.  Every step still hurts, and all I want to do is curl up in bed.  It's hard not to get discouraged at times like these.  Hard not to wish that I had the energy and stamina to do everything I want to do, when I want to do it.  All I can do is keep pushing forward, and make the decision every day to focus on what I CAN do, as opposed to what I can't.

Saturday, September 3, 2011

Dance Class

I made the decision last week to sign Addison up for dance class.  She starts this Wednesday, and let me tell you, you have NEVER seen a little girl so excited for anything in their life!  It is all she has been able to talk about lately.  Today, we went out and bought her dance clothes.....leotard, skirt, tights, and ballet shoes.




Isn't she adorable?!


I find it a little funny that some people still give me a funny look when I tell them that I signed her up for dance lessons.  Looks that say, "But, she has CMT....are you sure dance lessons are a good idea?"  "But dance isn't something that she'll be able to do the rest of her life, so why bother?"  "But what if she isn't good at it?"  "What if she gets hurt?"  Those looks usually make me want to say something not-so-nice in return, but I keep my tongue in check.

Why shouldn't I sign my princess-loving, wants-to-be-the-center-of-attention, ultra girly 3-year old up for dance lessons if she wants to?  There is NO GOOD REASON NOT TO!!  Every time that we have taken Addison to be seen at Shriner's Hospital, her doctor has reiterated to us that she is a normal kid, and the best thing to do is treat her as such.  Let her run.  Let her play.  Let her do the things she wants to do, whether we believe she will be great at them or not.  I don't ever want my daughter to feel like she missed out on things that she wanted to do because she was "different".  I also believe that things like dance classes, softball, etc., can only aid in keeping her active and keeping her muscles strong.

When we came home from the store with all of her dance clothes, Addison insisted on putting them all on and prancing around the living room.  Daddy's eyes got a bit misty when she proudly stated, "Look, Daddy! I'm a dancing princess!"  Yes, Addison, you most definitely are.

Friday, September 2, 2011

Shopping Buddy

Today started out with great, ambitious intentions.  I had gotten a decent night's sleep last night, so my pain level was really low this morning.  I got up, got dressed, and got both of my girls ready to go run a bunch of errands.  Contrary to what some may think, I really like running errands.  I like getting out of the house, and, stereotypically, I like shopping.


Lucky for me, I have the cutest shopping buddy EVER.  Addison, my 3-year old.  She adores getting out and going shopping, just like I do.  She can distinguish most stores from a mile away, simply by the route in which we're driving.  She loves the grocery store, and riding in the "blue cars".  She loves going to Target, and especially WalMart.  I love going shopping with her....almost as much as I love going by myself.  


So we set out this morning, with the promise to Addison that we would run a couple errands, then hit up WalMart and the grocery store.  Addison was elated!  And after every "errand" we ran, she would ask, "Mommy, are we going shopping NOW??"  We made it to the bank, dropped something off to my sister-in-law, paid and bill, and took my husband lunch.  I had hardly even gotten out of the car, but by that point, I was utterly exhausted!  All I could think about was getting home, putting my kids down for naps, and taking one myself.  I wanted nothing more than to kick off my shoes and take my AFO off.


But how do I explain that to my eager 3-year old?  How do I explain that suddenly the thought of hauling 2 children through the grocery store makes me cringe?  How do I explain the intense pain that would likely follow, and how long it would take to recover from that?  How do I explain to her that I'm already exhausted, and I'm not entirely sure why? And the worst....how do I come to grips with the possibility that my sweet, eager daughter may one day be in the same position I'm in....not so willing and eager anymore?


In the end, I don't explain those things.  I simply reason with her that it's nap time, and end with a promise that when I do get to the grocery store, she can go with me.  Then come the promises of riding in the "blue car" at the store and getting a lollipop from the checker if she's good.


Hopefully we'll make it to the store tomorrow.

Thursday, September 1, 2011

The Goal....

Well, here we are!  September 1st.....the beginning of CMT Awareness Month!  I honestly didn't think I'd feel as much excitement as I do, but it's actually pretty overwhelming.  Over the past few weeks, I've gotten more involved than I've ever been.  


I've talked to, emailed, and chatted with other people living with CMT from all across the country.  


I've read dozens of blog posts, emails, and real-life accounts of CMT experiences.  


I've emailed every local media outlet, asking them for help in raising awareness.  


I've been interviewed and photographed for a newspaper article for CMT. (Link to the article here.) 


I've been in contact with the Governor's office for an official declaration of CMT Awareness Month. (Still waiting for final word.  Keep your fingers crossed!)


I've been planning a fundraiser, which seems insanely more stressful than planning my own wedding!


I've passed out t-shirts, bracelets, pins, and pamphlets to my friends and family.


And still, there's more to do!  I'm working on putting some videos together, which will be on the CMTA's website.  I'm still hounding all the media outlets I haven't heard back from, and I'm continuing to post about CMT on my facebook and twitter pages. It's so awesome to feel like I'm contributing to a cause that I'm so passionate about!


But one of the big goals I've set for myself is to blog at least once a day during September about CMT and my experiences with it.  I've even talked my husband into doing a guest post on CMT from the "caregiver's perspective".  I'm excited to be able to share a side of myself that I have kept so personal for such a long time.


Happy CMT Awareness Month!!