I Vote for the Ups...

This is our last day of CMT Awareness Month.  Does that mean the last day for awareness of this disease?  I certainly hope not!  It needs to continue to grow, and grow, and GROW.  The light needs to shine on its existence.  So in the future, people with CMT will be diagnosed in a timely fashion, rather than searching for answers for many years.  So in the future, when I see a new medical professional and tell them I have CMT, I don't have to hear "What's that?" or "Is that a problem with your teeth?"  So in the future, everyone will just KNOW.  That is one of many dreams I have...I hope I'm around to see it happen.

In the meantime, I'm focusing on the Ups.  What are they?  The Ups are those moments that make you smile, make you blush sometimes...the moments that make you happy.  Those other moments are still there, intertwined with the Ups like tangled string...and sometimes you can't get the knots out.  Those are the Downs...and they happen, sometimes bringing you to your knees.  With CMT, I've seen many Downs, some of them the knee rocking kind.  I hate those moments. There's no blushing involved...just frustration, tears and sometimes pure anger!  I'm sure everyone has experienced their own Downs at some point in time, whether they have CMT or not...though I've learned that when you do have it, you appreciate the Ups all the more.

This month I'm happy to say has involved many Ups...and not a lot of Downs, at least not the major ones.  I won the 'I'm a STAR' award (YAY!) and just found out that I also won awards for my paintings that were featured in Artist's World Magazine...Best Use of Color, Best Abstract, and Best in Mixed Media.  Triple YAY!  This is one of those happy, blushing moments.  And I got to share it with my fellow CMT artists, Melinda (Best Photo--Surrealism) and Lenka (Best Photo--Realism.)  Congratulations, girls!  I hope we all have more of these happy experiences in our futures!

Cause quite frankly, I like it here.  I like the Ups...I want to have more of them.  I know those other moments will appear in my future, though when I couldn't say...like I mentioned in my last post, there's no guidebook.  And that's life I guess...the most complicated, difficult and wonderful journey, with no map.  Even though you have some control over the paths you follow, mostly you just have to wing it.  Though if I get a choice, I vote for the Ups...cause they make those other moments easier to bear.  With them, you get through the tangled forest, and see the trees...and each positive, tiny little detail shines through!

Losses and Gains

I have been trying to think of another aspect of Charcot Marie Tooth disease that I could talk about, while awareness month still exists and I am prompted to get the information out there.  I confess I have gotten distracted as of late, and one thing that took my attention away from another post (and gave me a huge SHOCK) was that I won the National CMTA's "I am a STAR" award.  My parents nominated me for this award, for everything I have attempted to do to raise awareness and funds for research, and I am very thankful to them for doing so.  I am also deeply honored that the CMTA chose me!  And did I mention shocked??

I guess the shock comes from being such a private person...I'm not used to the attention being on me in any way, and though I'm very forth coming with information when people ask me for it, I prefer outlets like this blog to share my story.  Here in the quiet of my home, I can spell check...take my time...edit my thoughts...and delete complete sentences about virtually anything that seeps out of my brain.  CMT related or not!  No one will see these thoughts unless I want them to, and this gives me some comfort.  In person I may trip over my words, not be able to come up with the answers right away, and the more people looking at me and waiting for my responses the more nervous I get.  Even running the CPO gallery (to raise money for research) is a huge step for me.  Not only is some of my artwork hanging on the walls to be looked at--there are also event nights that provide more opportunity to raise awareness of CMT...and when eyes are looking my way, the nerves kick in! 

But now I'm here, fingers on my laptop keys and the delete button within reach.  So what to discuss?  I always worry that I'm repeating myself, though since this is awareness month and someone new may find their way to this post, I'm giving myself a little leeway.  In November our local CMT support group is meeting to discuss ways in which to deal with loss, as that can be a big part of having this disease...so I've decided to talk about what that means in my life.  I've mentioned in past posts about having to retire from teaching in 2004, and most recently having to retire permanently from working part time as a receptionist.  If there's a paying job out there that will not hurt me, or exhaust me beyond the point of cognitive thought, I haven't found it.  And these types of losses can be devastating; including a loss of financial security which is frightening...paired with a loss of identity.  I admit that maybe I could have been better prepared...but I wasn't.  This is a degenerative disease, though despite that, I never expected I'd be where I am today.  If I'm not a special education teacher, what am I?  And once that hurdle had been sufficiently crossed, another one came my way...if I'm not a receptionist, what AM I??  Each occasion included my doctor(s) saying "You just can't do it anymore, Christine," and involved a lot of crying on my part, and a lot of nose blowing (also on my part.)  But I got through it...and I'm trying to maneuver on this new path, exploring the opportunities that are coming my way with my writing, and my painting.  There is still a part of me that wishes for a knock at my door, with an offer to PAY me for all of this writing and painting I am doing...but I'm not going to stop moving forward until that knock comes.  I'm just going to keep moving!

And why do I think I should have been better prepared for all of this?  I'm not sure, really.  It's not like there's a CMT for Dummies instruction manual, or anything.  There's no guidebook to tell you all the obstacles you'll face, or what losses you'll suffer...because all CMT-ers are not the same.  There are so many types and variations--even two people with the same type of CMT won't deal with the changes of this disease at the same time, or to the same degree.  And the losses you may face include the physical ones, such as loss of muscle and function.  Mine started at age 13, and progressed from there.  And years sometimes passed in between one loss and the next, with no indication of when another big change might come.  How are you supposed to prepare for something like that?  You aren't...you just deal with each loss as it comes, adjust how you do things and adapt as best you can.  It's what happens in life, whether or not you even have a disease...you just keep moving, because that's what you need to do.

I called this post 'Losses and Gains' for a reason, though...because there are gains to having a disease like this one.  And though it may sometimes be hard to see them, they do exist.  It gives you empathy for others and their suffering...it makes you look beyond your own difficulties to the people around you, to see they have hardships of their own.  It forces you to slow down, and in doing so you get to experience the world in a whole new way...you gain an awareness of life you may not have had before. It makes you thankful of what you do have, of friend and family support, and of small gains and accomplishments. And most of all, it makes you strong.  I don't mean a physical strength, but an inner strength that gets you through the difficult times, and shows you the way.  As tired as I get and as frustrated as I often feel from things I can't control, I'll be forever thankful for what I have gained from this life of mine.  For those things are now a part of me.

And so I'll keep sharing, writing and painting, as long as I am able...and when opportunities to step outside my comfort zone come my way, I'll do my best to put the nerves aside and share some more.  I have to do this for myself, and for others who live with CMT...and I do this with my fellow CMT bloggers, for which I am thankful daily:  Melinda, Melissa, Lenka, Nic, Michele...and even more--I discover new ones every day!  Together, we'll be shining some light on this misunderstood disease, so that a little awareness can grow!

Can You Do Tricks?

I have been keeping up with my new-found CMT-bloggers, and recently two of them posted about 'tricks' they have created, from having to live life with CMT.  That doesn't mean pulling rabbits out of hats, or sawing someone in half...it means all the little adaptations they have developed over the years to complete tasks, get through the day, and survive with this disease.  Their posts have inspired me to take a good long look at my own daily routines and tricks so I could best explain them to others, and raise more awareness for this disease.

So what are mine?  It was easiest for me to look at these tricks in groups, related to the body parts they've been developed to assist.  Because of my CMT my legs/feet and arms/hands have been compromised, so there are tools I have acquired over the years to help me be successful...but actually the first 'body part' I thought of was my back.  I am not sure if I would say my back has been the most compromised by CMT, though it seems to dictate my life with the firmest of hands and unyielding opinions on how I should live.  Because of weakness in my trunk, my muscles are not strong enough to hold my bones in place, which have a habit of turning and twisting in the most uncomfortable and disgusting ways...it's probably what frustrates me more than anything else I deal with on a daily basis.  I rarely have 'pain free' days, though some are certainly better than others!  And any injury I have suffered in the past has been back related...I went through year after year of re-occurrences of a severe injury I suffered in 2003, causing me to live in bed for 2-3 weeks at a time in order to recover.  Thanks to continued pool therapy and regularly scheduled Chiropractic treatments, I have managed to get to a point of stability...though it often seems as if this point is delicately balanced on the edge of a cliff.  As long as I do the following things, I don't fall off the cliff, and I can keep going: 1. Always have a seat cushion with you wherever you go, no matter what, even if you look silly carrying it around.  You'll be happy in the end, and your back-end will be happier!  2. Spread errands out, so you have breaks in between to sit down, or lay down (I didn't listen to that one today...I've already had to take one muscle relaxer, and lay on ice packs because of it.)  3. Always know what the seating arrangements will be for restaurants, friend's houses, libraries (etc.) that you may want to go to--are there chairs available with flat, straight seats and backs?  Will the place be too crowded, and all the chairs taken?  Will there be nothing but benches and lawn chairs?  (I don't go to those places.  No outdoor concerts or bonfires for this girl!!)  4.  Leave enough time in each day to lay down.  A lot.  (That's the one I probably dislike the most.)  There are days where it seems like all I do is stay at home, taking turns sitting down and laying in bed...anyone else who is forced to do this on a regular basis, knows that it gets old, FAST.  Here's a picture of my lovely royal blue seat cushion, which despite it's bright color, I've managed to leave in numerous restaurants.  Luckily I've always gotten it back!

I suppose my legs/feet would be next...what I have to help them function are my Helios.  I can't wear anything heavier than socks without having those on, because I am unable to lift my feet to walk--this is because of the foot drop I have, due to the CMT.  Without the braces, my feet are very heavy, as if they are encased in cement.  I actually walk around a lot at home without the braces to give my feet a break from them, and hold onto the walls and furniture when I need to.  But in order to wear shoes, my Helios are my faithful friend, and very necessary!  I also need to follow rules when it comes to my legs: 1. When walking long distances...oh, wait.  You CAN'T walk long distances.  If there IS a lot of walking, make sure there are places to sit down along the way to rest (see rule #3 in 'back' section, as it applies to these random seats.)  Let's just say I don't go to the mall very often!  2. Make sure you time your errands to coincide with small check out lines, so there is limited standing...as standing still is hard.  Noon till about 1:30 is a pretty bad time to go to places such as the bank, because people are on their lunch break, and lines are a definite! 

That leaves my arms/hands.  There are a lot of tools I've acquired to assist me, my scissors being at the top of my list.  I have them all over the house, and they are made for people who don't have good use of their thumbs.  You see, the first noticeable symptom of my CMT was losing my thumb muscles...making my hands very weak!  Because of this weakness I've overused the muscles in my arms and upper back to compensate...and unfortunately when you overuse muscles which are atrophied to begin with, you tend to lose them even quicker.  I've adapted the way I do most things because of my lack of muscle and mobility, from locking/unlocking my front door with both hands because I can't grip or turn keys, to how I brush my teeth (also two handed.)  I have pencil grips I put on pens and pencils and art brushes to make them wider, special rocker knives and meat scissors to cut meat, but my everyday scissors are what I use most.  The way everything is packaged these days is ridiculously hard for me to open, so I cut EVERYTHING.  And if it's something I can't cut, I tend to open it with my teeth...those are very strong!  It's funny when someone asks me if Charcot Marie Tooth disease means I have something wrong with my teeth, and then I proceed to open a box in front of them by chewing it apart. :-)

I guess those are my tricks...some of them, anyway.  I really don't think about them much as I go through life, to tell you the truth.  They are just part of my day.  I don't even think about CMT when I put my braces on--I just put them on and go.  I think as we move through September, trying our hardest to raise more awareness and teach more people about this disease with the funny name, these tricks and differences become more apparent...but you'd be surprised how little us CMT-ers actually think about all the things we do to make our lives livable.  We just do them, because...well, you do what you have to do.  And I will keep doing my tricks, as long as I am able!

 

CMT Bloggers, Unite!!!

I realize my title sounds a little like a superhero cartoon (Wonder-Twin powers, ACTIVATE!) and maybe there's a reason for that...I feel a little like a superhero this week.  It's a nice feeling, especially for a person who often feels very un-superhero-ish.  Yes, I know that isn't really a word, and I am sure spell check will be quick to point that out to me.  Though anyone who faces daily physical challenges will probably understand what I mean...sometimes it's hard to feel like a superhero when you have difficulty opening simple things, lose your balance just crossing the room, and gracefully do things like walk into walls (rather than through them!) 

But I digress...mostly because I don't want to dwell on what makes me feel clumsy right now.  Instead, let me tell you why those things have managed to fade into the background.  As you will know if you read my last post CMT Awareness Month, 2012  we are pushing extra hard to raise awareness about CMT across the country...this includes helping awareness to grow within the medical community, so in the future people who have this disease can enjoy (well, maybe not enjoy...) visits with medical professionals that DON'T include having to teach them the meaning of CMT.  As you can imagine, that takes up a lot of extra time, and doesn't really leave you with a feeling of confidence in their skills.  One of the things I have been involved in recently is a contest for Artist's World Magazine, called 'Expressions Art Challenge for CMT Awareness'.  Artists with CMT, or artists who have friends with CMT were asked to submit their work for the 'Expressions' contest, for AWM's September edition...and three of my paintings were chosen.  YAY!  And even more exciting is that Artist's World will be in galleries and museums across the country, helping to further raise awareness of CMT.  Bigger YAY!!

Though even bigger than having my paintings printed in a magazine is something that has happened within the past few days.  After writing my last post, I received some comments from other CMT bloggers around the country, and was actually able to chat with one of them.  And it is always exciting to meet other people who deal with the same issues I deal with everyday, and who have taken the initiative to blog about their stories as well!  This disease has many different components to it, which can include lovely things like pain, and loss...though one of the biggest components is often this feeling of alone-ness where you feel like no one else in the world exists with CMT.  And even though you know in your heart that isn't true, when you move through your life explaining over and over again what CMT stands for (NOT just country music, people!) that feeling of being alone can grow.  I was 38 before I even met anyone else who had it...and now I feel like I am part of a community of CMT-ers, and CMT bloggers.  Maybe in this growing technological world, we can reach enough people to raise the awareness of this disease to an acceptable level...and maybe CMT-ers world wide will finally have a voice, and be heard!

 

  

So take a moment and check out the links below...I guarantee, it will be well worth the extra clicks!  You will see some exceptional CMT bloggers, and learn their stories.  And if you check out the last link to AWM, you may even notice that one of the other artists is none other than Lenka from 'Lenkaland', who is also an amazing photographer.  Maybe someday I'll actually get to meet these wonderful people in person at a CMT-blogger conference...who knows what the future holds?  In the meantime, keep reading and sharing these various blogs and help us in our 'superhero' fight to raise awareness for CMT!

My Life With CMT
Lenkaland
Clicks for CMT: Bloggers Raising Awareness
Artist's World Magazine