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).

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!

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.

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!

 

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!