Legs

Legs. I always check out people's legs.  That might seem weird... but hear me out.  We notice things on other people that we like and wish we had for ourselves. 

While I was flying home for Christmas, I couldn't help but notice people's legs.  Walking off of the jet-way, walking through the airport- how nice it must be to walk confidently, quickly, on strong, sturdy legs. How nice it must be to walk without fear that your legs will give out, that you might slip on the floor, or someone will run into you and knock you slightly off balance, just enough that you fall over.

I bet people don't even think twice about their awesome legs that get them from place to place efficiently and without difficulty. I do wish I had better legs.  Don't get me wrong, I am so grateful that my legs can still do what they can do, but of course I wish they could do more. It seems like all legs should be created equal, they should be able to do the same things... what should be simple things. 

Oh, legs.

It Has Been One Year!

I can’t believe we’re already in September!  The 17^th of this month is the 1 year publishing anniversary of The Graceful Art of Falling.  In honor of this anniversary, I want to share some of the wonderful things that Graceful has accomplished this past year.  The Graceful Art of Falling…:

• Had a table at 2 book signings
• Was talked about at two different MDA events
• Got stocked at two bookstores (Bookworks in NM and the Original Vermont Store in VT)
• Donated a portion of proceeds to the FSH Society 
• Got connected with fans on facebook, twitter, this blog and the website
• Received several great reviews on amazon

Some ideas for 2014-15 include:

• Starting an email sign-up for a quarterly or bi-annual newsletter
• Getting Graceful in the “free books” section of amazon for a few days
• Participating in a couple more book signings
• Donating more of the proceeds to another organization that supports individuals with muscle disorders
• And, possibly starting another book… which may be nothing like Graceful.

Show Your Strength!

Don't forget to tune into the MDA Show of Strength Telethon this Sunday!

If you want to learn more about one woman's experience with MD, read The Graceful Art of Falling...

More Frustrating Than You Could Imagine

I often try to be positive in my blog writings.  But having a muscle disorder is more frustrating than you could imagine.  I try to overlook the agitation I feel when something is difficult for me… and eventually it all just sort of spills out.  

Take last week for example.  I finally ordered new pictures to replace the pictures I currently had in a frame on my wall.  The frame is wooden with slots for 8 pictures, four going horizontally and four vertically.  It took me a while to pick out the pictures I wanted to put into the frame, and then had to wait for them to arrive in the mail.  As soon as I received them, I took the frame off the wall and organized the pictures in the frame so that the colors and intensity seemed balanced.  That was all fine- took me about five minutes.  Getting the frame back on the wall was another story.

Since I’m not super tall I already have trouble hanging things.  Weakening arm and shoulder muscles don't help either.  I had to move my desk out of the way to reach where the frame was hanging.  The nails were still in the wall so I thought I could just figure out how it was hanging and get it back up there.  It was not so easy.  I could only get one of the two nails in the right place while the frame kept sliding down the wall.  I was able to catch it several times… until I didn’t.  I could have predicted that was going to happen.  

The frame obviously broke.  And I, in turn, had a small breakdown.  Because sometimes it just sucks to not be able to do something so simple as hanging a damn frame on a wall.  

I can probably fix the frame with wood glue, or get a new frame, but I will need to ask someone’s help to hang it up.  I just never get used to asking for help with something that I should be able to do myself. 

...Having a muscle disorder is more frustrating than you could imagine.

FSH Conference

I would like to take a second to let everyone know about the FSH conference- which is next weekend!  I truly wish I could go.  Info from fshsociety.org to follow...
 
2014 FSHD Connect
The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers
Saturday-Sunday, August 16-17, 2014
The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210
The 2014 FSHD Connect Meeting will bring together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year's meeting will feature talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members have requested, including teenagers and young adults, caregiving, traveling and sports.

View the tentative Program and Agenda HERE
See faculty and breakout speakers HERE
Info and Online meeting registration HERE
Mail-in / fax meeting registration HERE

Visit: http://fshsociety.org/ for more info (info is on the homepage under News and Events).

Stay Involved!

It's been a while since I've shared other ways to follow the happenings of The Graceful Art of Falling.

Are you on facebook? Like us.

Are you on Twitter? Follow us.

Want to learn more about FSH? Check out our website.

If you haven't already, you can also subscribe to this blog to receive notification of new postings.  Just provide your email address to the right. >>

Book Review

"Miss White's story is deeply touching and inspirational. You will find yourself crying, smiling, and laughing to yourself. Miss White has incredible strength and a great sense of humor. This is a very raw and organic story. You'll want to share her book with everyone you know... I hope her message reaches many more. There is a lesson for everyone." 

- A review of The Graceful Art of Falling on Amazon.

I Would Recommend...

I try to post some cool things that I share on facebook in this blog.  And I regularly share other blogs, especially those on MDA Transitions.

If you feel you would like to understand more about the many muscle disorders, I would recommend reading...

Forgiving Yourself

The Importance of Humor: From Frustrated to Funny

The Importance of Staying Active

Birthdays

I'm turning 29 in 2 weeks.  29... it sounds so old.  Birthdays and New Year's Eve are two times of year that I secretly dread (or maybe not so secretly).  These important milestones make us think about what we have or have not accomplished in the past year and cause us to reflect on what we have in our lives. 

I (unfortunately) focus on all the things I don't have, first...  I would like to own a house.  I would like to at least be dating the man I'm going to marry (haven't even met him yet).  I would like to be thinking about kids.  I would like to have my career path figured out.  I was sure by the time I was 30 I would have all of these things.

But then, I usually get a hold of myself and realize all the wonderful things I do have in my life. I have a wonderful family and friends.  I have a Master's Degree.  I have 6 years of real-life work experience under my belt.  I have a nice apartment, and am making enough money to have a car, pay for food, and even buy myself something nice once in a while. Perhaps most importantly, I am still walking, still driving, still getting around reasonably well, and still have my freedom.

In defense of my birthday, I actually have had pretty good ones for the past several years.  And, if I focus on the things I have accomplished rather than the things I am still striving for, turning a year older doesn't seem so bad. That being said, I still may decide that I don't want to turn 30, and this might be the first of many 29th birthdays.

Mobility

FSH Factoid: The rapidity and extent of muscle loss differ considerably among FSHD patients — even among members of the same family. Some report few difficulties throughout life, while others need a wheelchair as walking becomes too difficult or impossible (FSH Society, 2010).

An excellent blog entry about using a wheelchair can be found here. 

Did I Mention I Love to Read?

I'm currently reading a fantastic book series. The series is "The Game" by Terry Schott. The premise is bizarre and really alters your way of thinking about life.  In short, Earth is a planet where avatars from another planet live several lives as a replacement for traditional schooling- youth gain much more knowledge by living and learning from real life experiences. 

What I really enjoy about the books is the emphasis on: 1.Life is just a game, and you receive more points for doing meaningful things, so don't "waste a play"; and 2. Anything is possible on earth- people just don't realize they can do anything.  In the book, very skilled individuals can even learn to fly. 

As one who suffers from a chronic, progressive muscle disorder, I am often perturbed by people who say "you can do anything you put your mind to."  Because sometimes, you physically cannot.  No matter how hard you try.  Recently however, even I have noticed small changes in my body's abilities.

I started practicing yoga last August... only 8 months ago.  And from time to time I will try something in class that I wasn't able to do when I first started.  I am getting better.  My body is getting stronger.  Maybe it's only a small change, and maybe it's not enough to affect the challenges of daily living, but how remarkable it is to notice those small progressions.

I've always thought that muscle strengthening, for me, was a lost cause.  You're constantly taking one step forward for every two steps back.  But my physical therapist will even say things like "I don't think you were able to do that 3 months ago..."  Our bodies are amazing machines, and we need to continually perform maintenance (healthy eating and regular exercise) in order to have the strongest machine possible.

Perhaps with a little extra effort we are able to achieve anything...

Book Review

"Great Read!

As a person who also suffers from FSHD, I greatly appreciate Ms. White's experiences with this disease. I believe that her book helps those dealing with this unfortunate affliction understand that they are not alone... It has always been very hard for me to ask for help, but I have realized that sometimes you have to swallow your pride and ask for help. I believe that when people understand the why's they are more compassionate. People in general just need to be given the chance to understand. This was a great read and I have passed it along to some friends in the hopes that they can understand this disease a little better."

~ A review on Amazon about The Graceful Art of Falling

Beauty

I've recently posted, on facebook, several articles related to beauty, so I thought I would clump them into one blog post.  I talk about this concept a little in the book, but actually removed several sections where I wrote about beauty for the final publication.  I didn't want to sound vain. 

 As a woman, beauty is often on my mind; and as a woman with a disability, the beauty "ideals" seem impossible. 

Here are two great articles on beauty and disability:

Woman with MD Becomes a Model

Perceptions of Beauty for the Disabled

Drug Study

First FSH Muscular Dystrophy High-Throughput Drug Discovery Study Published...

 
Read more here.

FSH Documentary

This is an amazing documentary about living with FSH musclular dystrophy.



It's worth the watch.

Baby Blues

I am almost 28 ½ years old.  I do not have any children, and recently, I have realized how much I want a child.  Lately, I cry when watching TV shows with babies, and I now feel that ache in my heart.  That ache that lets me know- okay, you are now emotionally ready to take care of another human being.  Being physically able is another story.  

Several weeks ago I met with a genetic counselor.  We talked about my family history and about the options for having a baby.  I was already well-versed in the options and the risks for me having my own child.  Not knowing much about FSH MD, I sent her my gene test and she called a genetic counselor at Athena Diagnostics, where the test was performed.  She did learn some interesting things which she passed along to me in a phone conversation after our initial appointment.

One thing I had been told (or read- I can’t remember) was that if I got pregnant, they could test the fetus to see if the baby was likely to have FSH.  This is actually not the case in 2013.  Testing is currently only available from blood samples and therefore could not be done during prenatal testing.  I think I was told/read that while they could test a fetus for presence of the gene they would not be able to tell the severity… the presence could mean symptoms as hard to deal with as mine, or they could show no symptoms at all.  I assume these facts are related.

Therefore, my options would be to have a baby of my own and “chance it.”  The physical stress this would put on my body is obviously a big part of this scary decision.  I could have a surrogate carry my egg and “chance it” or carry a baby with their egg and my future partner’s sperm.  Or, I could adopt.  She was very adamant that while the technology isn’t available in 2013 to test a fetus for FSH MD, it could be in a few years.

Almost as if the Universe was feeling the pain in my heart to realize and accept that I would {probably} never carry a child of my own, the Today Show did this amazing special on adoption for a whole week.  I have always thought giving a child a home who needed one would be a great way to go.  During the special, they were talking with kids of all ages who just wanted a family to love them. 

I am now 99.9% convinced that adoption would be the best and most natural option for me to have children.  I better begin my research.

The book is now in the design and layout phase.  Within 3 weeks the proofs will be done, and the design can be finalized.  So exciting!