Tuesday, December 2, 2014

Happy Giving Tuesday!

If you didn't get a chance to give back today, make a point to do so before the end of the year.  There's nothing more important.  
Donate to a charity, volunteer, or do something nice for someone else.


Tuesday, November 11, 2014

Free Again!

The Graceful Art of Falling will be available for free on Kindle this weekend!


If you haven't had a chance to buy the book yet, download it for free!


 

Tuesday, October 28, 2014

Re-Cap

Some things I've posted other places but not on this blog:


This excellent blog about reading young adult novels to escape reality.

An update on clinical trials for a DMD drug.

The Graceful Art of Falling was available for free for a weekend on Kindle!  I'll be better about posting it next time (probably early November).

And, President Obama signed the #MDCAREAct into law. 


Whew, I'll try to write another entry soon...

Thursday, October 16, 2014

Happy Disability Awareness Month!

October is disability awareness month!  It sometimes gets lost behind all the pink ribbons and breast cancer awareness, but it's equally important to bring awareness to disabilities- mental, physical, and cognitive. 

I plan to read up on a disease or disorder I am not familiar with- I challenge you to do the same.  



Thursday, October 2, 2014

Yes, do.


If we can't do this everyday, we should at least try to do something a few times a week.  
Great advice to live by.

Thursday, September 18, 2014

Looking Back

In honor of our 1 year anniversary (woohoo!), I give you some of the original cover options we had for the book.

Did we make the right decision?





Sunday, September 7, 2014

It Has Been One Year!


I can’t believe we’re already in September!  The 17th 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…:


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.

Thursday, August 28, 2014

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...





Thursday, August 21, 2014

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.

Thursday, August 7, 2014

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).

Thursday, July 31, 2014

OPMD in New Mexico

As many of you may know, I am currently residing in the state of New Mexico.  I have been quite interested in the fact that OPMD (another type of MD) is very prevalent in the state of NM.  Apparently, some muscle diseases have pockets like this around the country. 

View the news report for more info!

Thursday, July 24, 2014

Oh, Vermont.

You'll have to forgive me for not posting a blog entry last week... I was on vacation.  Well, sort of.  I went home to visit my family and friends in Vermont.  Vermont is quite lovely in the summer.  The landscape and style of houses still prove to be difficult, though.

I was frustrated the first night I was home with the obstacles in my parents' house.  Things all over the floor: rugs that slide, toys for my nephew, gates for the dogs, steps and stairs to get almost everywhere.  It's like an obstacle course.  The first emotion that hits me is sadness- sadness that I can't work around these things easily, sadness that I couldn't live here anymore.  But then I remember that this isn't my life anymore.  I don't live here.

I go home to see the people I love.  I just need to remember to mentally and physically prepare  myself when I go home.  Prepare myself to be even more vigilant about where I'm walking and how tired I am.   Prepare myself for the unavoidable falls and to do the best I can to make it through the week without falling all over everything.

My mind then drifted to my time living in Boston.  I have no idea how I got around like I did. It's a testament to how much my strength has declined in 5 years.  I wonder if I had stayed in Boston if my strength and coordination would still be like it was.  Maybe.  Or maybe it would have declined just the same and it would have gotten impossible for me to live there. Then what would I have done?  I would not have known that it would be easier for me in New Mexico.  After all, I had never been there before I moved.

I get a little depressed every time I go home.  I am reminded of all the things I cannot do. But, like I said, I go to Vermont to visit the people (and area) I love.  I only go home two weeks a year.  ...Eventually it might need to be two weeks in the summer instead of also going in the winter.  But surely, surely I can handle that.

Thursday, July 10, 2014

Book Signing July 19th!

It's official. I will be doing a book signing at the Original Vermont Store on Saturday, July 19 from 10-11:30am! Come on out and visit!

 

Friday, July 4, 2014

Currently Reading 7.2014

I often get asked if I am "a reader."  I am indeed a reader.  I usually get a response such as, "Ah, I figured, author's usually are." 

My goal is to read 20 books in 2014.  I believe I am a little ahead of schedule right now.  Because I am such a fan of books, I thought it would be fun to share what I am reading from time to time. 

So here goes... I am currently reading the Vampire Academy series.  I LOVE book series. It can keep me occupied for months!  I'm not ashamed to admit that I've read the Harry Potter books (multiple times), Twilight, The Hunger Games, Divergent, etc.  Loved them all.


I just finished Blood Promise and will soon begin Spirit Bound.  I have to take a break between books because I get so drawn into them.  After I finish one it's like I have a book hangover and have to snap myself out of it before I start another.  If you like book series, I would recommend this one!

Saturday, June 28, 2014

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. >>


Thursday, June 19, 2014

My On Again Off Again Relationship... With Food

For as long as I can remember I have been a picky eater.  I have gotten a lot better about eating more diverse foods.  Unfortunately, I also have several food intolerances.  About five years ago, I was first tested for food issues.  I was having a lot of trouble with foods, mainly being nauseous every day.  I was living in Boston at the time, and on my way to the work in the morning, on the T, I would be looking for the exits in case I needed to get off to throw up.  I found out that I was severely intolerant to apples.. and at the time I was eating an apple everyday (an apple a day is supposed to keep the doctor away).
 
I have been told by several naturopathic doctors that my food intolerances are related to my MD.  Something about the MD starting as a virus, then your body can't fight it anymore, so it sort of goes behind the scenes and other things (like food issues) show up a lot.  I don't understand kinesiology as much as I wish I did, but my body always seems to respond well to the supplements given to me from the testing.  So I usually believe what they tell me.

Just last week I went to a new kinesiologist and found out that I am having issues with food again. I went back into a small depression about eating.  I went through this before.  I get told all these things I "shouldn't" eat, and at some point it's like... what else is there?  If I didn't have to eat, I probably wouldn't.  Because the truth is, most food makes me feel bad- tired, stomach aches, even stuffy nose and head congestion.  It's more like a chore.

Once again I have to figure out what I can't eat, what I shouldn't eat very often, and what is okay to eat as much as I want.  And then, I have to really pay attention to what I'm eating.  It's exhausting.  My relationship with food is rocky, but I try to eat as well as possible in the hopes that I can feel as good as I can, despite my chronic illness.

Thursday, June 12, 2014

Goodreads Giveaway Winners

Congrats to Nancy in IL and Margaret in WA for winning the Goodreads book giveaway!

And thanks to everyone who entered the contest for your interest in The Graceful Art of Falling.  You can also buy the book here.

Thursday, May 29, 2014

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.

Thursday, May 22, 2014

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

Saturday, May 17, 2014

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.

Thursday, May 8, 2014

Book Giveaway!

Enter to win a free copy of The Graceful Art of Falling!


Check out the giveaway on Goodreads!



Saturday, April 26, 2014

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

Sunday, April 13, 2014

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...

Thursday, April 3, 2014

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

Thursday, March 27, 2014

Book Signing!

The first event for The Graceful Art of Falling will take place on April 6th at a Local Author Fair at Bookworks in Albuquerque! Event starts at 3pm. 

Come on by, say hi, and get another copy of the book!


Friday, March 21, 2014

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


Thursday, March 13, 2014

Happy St. Patrick's Day!

'Tis the season... Don't forget to buy a shamrock and support the fight against muscle disease! 


Friday, March 7, 2014

Alternative Medicine

I wrote a little about alternative medicine in The Graceful Art of Falling, I mentioned that chiropractic care was one of the only things I believe improved my health.  Now, I know a lot of people don’t “believe” in this type of medicine, especially western medical doctors. I find that extreme considering acupuncture has been around for thousands of years- before modern medical technology.  Either way, I can only talk about my experiences with these therapies.  
 
Having a chronic disease for which there is no treatment or cure, one often asks herself: okay so what else can I do?  Interestingly, when I first started seeing my amazing holistic chiropractor when I was 16, she told me she thought she could decrease the severity of my muscle degeneration.  She also told me that she repeatedly tested me for MD and my body never reacted positively.  I wish I had picked her brain on that one… could it have been the type of MD she was testing for was not what I had?  While I was (probably) falsely optimistic starting chiropractic care, she did treat, cure, or improve any other issues I was having.  And to only have to deal with a chronic muscle disorder IS easier than dealing with a muscle disorder in addition to say, an ear infection causing dizziness, a stomach virus, or severe moodiness.  

This past week I visited an acupuncturist for the first time.  I haven’t been receiving the kind of chiropractic care I would like in several years- I probably should have sought out an alternative sooner. For any of you who may be considering acupuncture I need to be honest... you absolutely can feel the needles… well some of them.  Some you can’t feel at all, which is bizarre.  But like other alternative medicines, practioners target the places you are having issues.  Luckily, it only hurts for a second, and once they are all in it is very calming.  I had more energy after my appointment than I had in over a month.

My reason for the visit to the acupuncturist was that I had been having trouble with kidney stones and UTIs for the past month and a half.  If you’ve never experienced kidney stones, consider yourself VERY lucky.  I had two urgent care visits, and a visit to the ER in the past month.  Unfortunately, they don’t really do anything for kidney stones... you are given pain meds and anti-nausea meds (which are truly useful), but nothing about how to prevent them or really treat them (unless they are so big that intervention is needed).   I finally saw a urologist three weeks after my ER visit, and it was a useless waste of my time.  The images from the CT scan were so old that he couldn’t determine anything, he didn’t want to do a urine screen because he wasn’t sure if the stones were still in there, and for some reason he thought it would be a good idea to talk about “prevention tips” at our next visit.   

What?  I waited a month for this appointment and you did absolutely nothing for me.  I was told I needed to get another x-ray in a few weeks, bring the images back to him, and then we can discuss the other things.  Perfect example of why I am not a fan of western medicine.  Don’t get me wrong, if I needed surgery or was having a baby I would be all about a hospital, but I can’t wrap my head around the way we (as a country) handle “preventative care.”  It makes so much more sense to treat the cause, like alternative medicines do, rather than just the symptoms.

Needless to say, I will continue to go to the acupuncturist and see how that works out for me.  It’s always worth a try.

Thursday, February 27, 2014

Drug Study

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

 

Read more here.

Thursday, February 13, 2014

FSH Documentary

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



It's worth the watch.

Tuesday, February 4, 2014

Winter Weather

While I love Vermont with all my heart, the winter weather is miserable.  I was watching the weather before I left New Mexico.  It was supposed to be fairly mild with no precipitation for the week.  It obviously couldn't be that easy for me.

I got home on a Sunday evening, it was humid out, but not raining.  I love the humidity.  I fly into Albany which is about an hour and a half from our house in south-western Vermont.

"Everything's covered with ice," my mom said to me as we are leaving the airport.  "Your father said to call when we get close and he'll put some salt on the deck." 


The roads weren't bad, the temperature wasn't too cold, but it had rained and then the temperature dropped, and everything was indeed covered with ice.  Icicles were hanging from the mailbox, the trees, the side of the house, and the driveway... oh our driveway, which I'm pretty sure every one of my friends has driven/slid off at some point during our high school career... it was like an ice skating rink.


After the challenge of getting me into the house when we got home (this included both my mom and dad helping me after I almost got taken out by one of our very large dogs), I stayed inside for three days.  I didn't have to go out, so why go?  It got a little warmer toward the end of the week so the terrain was not so treacherous.  I was able to go out and hang out with friends. 


Maybe I needed a reminder of how impossible winter weather is for me.  As I am considering leaving New Mexico for the east coast, I have to very strategically figure out where I can be that isn't too far from home, but also somewhere that doesn't get too much (if any) snow/freezing rain/ice.  Because I can't hack it.  It's not so much of an issue when I don't need to be anywhere, but if I had a job, had to run errands, etc., it would make it very difficult.  Just one more pain in the ass side effect of having a muscle disorder that affects your mobility.

Saturday, February 1, 2014

Follow Us

Want to keep up with all The Graceful Art of Falling's blog posts?  Enter your email address in the box to the right, and you will receive an email notification when a new entry is posted.

Thanks so much for checking us out!

Friday, January 24, 2014

Raising Awareness

In promoting The Graceful Art of Falling I have become much more aware of how many individuals are raising awareness about muscle disorders and disabilities.  I am so impressed with all that is out there and believe that we truly can make a difference.

"When American Girl announced this week that its 2014 Girl of the Year doll was a blond ballet dancer named Isabelle, at least one avid fan was crestfallen: 10-year-old Melissa Shang of Pennsylvania. And so Melissa, who has muscular dystrophy, did something about it: She launched a Change.org petition asking Mattel (which owns American Girl) to create a doll with a disability. The online petition has picked up 15,000 signatures in less than a week."

Read the full article here.  And please sign the petition!

Thursday, January 16, 2014

We Are All In This Together

Mr. Brad Miller of 'My Beckers Story' so kindly asked me to send him something to post on his blog!  You can see the guest blog post here.  Please follow his blog and follow him on facebook and twitter

"The best thing about sharing my story is the opportunity it gives me to meet others. Like I have said before no matter what form of Muscular Dystrophy someone has I truly believe that we are all in this "Together". So as the My Becker's Story blog enters its fifth year it is my plan to make people more aware of the many different forms of Muscular Dystrophy. Recently I had the opportunity to connect with the author of The Graceful Art of Falling a book created by L. White who has chosen to share her story of what it is like living with FSH MD (or FSHD)." 

Thanks so much for your support, Brad!