Wishing everyone a happy holiday season!

Last Minute Shopping?

Doing some last minute holiday shopping? Buy The Graceful Art of Falling on Amazon Smile and donate to the FSH Society at the same time!

Find the FSH Society on AmazonSmile.com; it’s just like shopping on Amazon but .5% of your purchase is donated to the FSH Society!

MDA Shout-Out

I would like to give a shout-out to the New Mexico MDA. They had a lovely holiday party last weekend, and I was able to talk about the book for a few minutes.

We all need to keep spreading the word and raising awareness about muscle disorders! 


... I also found this awesome MDA blog for teenagers and young adults.  Check it out!

Yoga Healing

The strangest thing happened to me in yoga class the other night.

We were doing "pigeon pose" which is a serious hip stretch.  We are told that you carry emotion in your hips.  If you are really tight in your hips it's because you are holding onto something that is no longer serving you.  I have cried on many occasions while doing hip stretches in yoga class.  Well, most of the time it is my right hip that is the tightest, and your right side represents masculine energy.  There is one visualization that I really like for the pose; on the inhale in the {uncomfortable} stretch you bring light, love, and energy into your body, and on the exhale you send it to a man in your life who has caused you pain.  Recently, this has always been the same guy, a guy who is on my mind more than I would like.  But, on this night, it wasn't my right hip that was tight, and no specific guy popped into my mind during this stretch. 

My left hip was the tight hip. The left hip which represents feminine energy.  And who popped into my head as I was visualizing light, love, and energy? I did.  I listened to our instructor saying, "..this may be 'past' you... and you are not 'past' you anymore, and you will not be 'past' you in your future... forgive yourself and let go of any guilt or negative energy you are holding onto about your past mistakes or decisions." 

I finally cleared up all negative male relationship energy in my life, and who was my focus on now? Me. How interesting, I thought to myself.  I had been spending so much time in the past few months clearing all the clutter away from my brain and my heart, and the only thing left was the issues with myself.

I didn't think about it too much in class, because you are supposed to clear your mind and let things go.  But, I was contemplating this later, thinking about the things I might not have forgiven my 'past' self for.  I remember not always being so nice to my siblings (especially my sister) and even some of my friends in high school.  One might say I was just a normal teenager, but I think some of that anger came from having to deal with muscular dystrophy.  It's always been frustrating.  

Another thing I haven't forgiven my past (or present) self for: not accepting my body.  When my muscles fail and I am on the ground cursing in my head, when I think about something I want to do and then realize how difficult that might be for me, and even my recent acceptance that my body may never be able to give me children... These are all things that I wish were different.  But then I feel guilty for wishing these things were different.  Aren't I supposed to accept my body and myself for what it is and who I am?  Aren't I perfect just the way I am?

It will take many, many more yoga sessions, dedicating the class to myself, and sending myself good energy, to know if this is really something I can do- if I can forgive myself for all past mistakes and decisions.  But I feel like this was an "aha" moment that might be leading me down a path that will really help me heal.

It's Giving Tuesday

I loooove the Giving Tuesday campaign.  I think it's awesome to be reminded that the holiday season is actually about giving.  After Black Friday and Cyber Monday comes #GivingTuesday which is a day to give back to your community.  It is only the 2nd year of the Giving Tuesday movement and some parts of the country are much more aware of this amazing day than others... 

I was so happy to see the FSH Society mention Giving Tuesday- they are receiving matching grants up to $300,000 for any donations made by December 31st.

The Muscular Dystrophy Association is also participating in the movement.

How will you give back?

Happy December!

Have you started your holiday shopping?  There are always those people on our lists who are impossible to shop for.  Why not buy them a new book? 

The Graceful Art of Falling is available in paperback or as an e-book.  Check out the book on Amazon.

Thanksgiving!

I am so thankful for so many things... Let's all remember to be thankful for the things we do have and not focus on the things we do not.

Have a wonderful Thanksgiving!

Sharing: My Becker's Story

In the spirit of sharing about other forms of muscular dystrophy, I would like to share this video.  It is specifically about Becker's MD, but many of the symptoms and facts conveyed are true for other muscle disorders as well.

What is Becker's MD?

You may even be inspired to click on other videos about MD on YouTube!

FSH Society

~FSH Society partners with Wellstone Muscular Dystrophy Cooperative Research Center~

"There are currently no clinical trials of novel therapeutics for FSHD ongoing in the United States because of a lack of relevant preclinical data to direct development of therapeutic targets to disease mechanisms. The Wellstone Center seeks to change that. 

'FSHD leads to severe muscle weakness and our Center's therapeutic approaches will focus on development of drugs that target disease genes, as well as drugs that improve muscle strength,' says Center Director Charles P. Emerson Jr, PhD, professor of cell & developmental biology and neurology. 'The therapeutic approaches being developed by our center will have broad application to the treatment of other muscular dystrophies and other debilitating medical conditions of muscle weakness including aging, muscle injury and confined bed rest.'"

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.

Veterans Day

Let's all take a moment to honor and pay tribute to our veterans on Monday.
 
"On the first anniversary of her election to Congress, Rep. Tammy Duckworth, an Illinois Democrat and Iraq war veteran, urged the passage of a treaty that would protect the rights of individuals with disabilities on a global scale."  Read the rest of this article here.

FSH MD

FSH MD occurs in 7 out of 100,000 people and is the most common form of muscular dystrophy.

People with FSHD comprise about 25% of all muscular dystrophy sufferers.  

There is no cure.

Friends of FSH Research is a wonderful organization dedicated to finding a cure for FSH muscular dystrophy! If you're looking for a way to support the cause, consider donating to them. 

No matter how large or small the obstacle may be- this is an important reminder that you can get through it.

Website Up and Running!

Check out The Graceful Art of Falling website!

I like to think of it as the hub of all Graceful activities :). 

Disability Awareness Day

I have had the privilege over the past month and a half to work with a student group on UNM campus.  The A.C.C.E.S.S. group (Accessible Campus Communities Equals Student Success) planned the Disability Awareness Day Event going on tomorrow, October 28th, on the University of NM Campus.  

I am a little embarrassed to say that I did not know this group existed while I was attending graduate school at UNM. I don't know that I would have been a part of the group at that time, but I'm so glad that I was able to participate in this event planning.  The members of the group are incredibly strong and capable individuals who promote access for EVERYONE: those with physical, mental, and learning disabilities, LGBT, and other underrepresented groups are a part of this advocacy.  

We will have several workshops at the event put on by organizations in Albuquerque and Santa Fe.  Tim Harris, of Tim's Place, will be the keynote speaker.  The theme of the event is: "Accessibility is for EVERYONE: Understanding 'Ableism,' Redefining Disability." 

This will also be the first event to promote The Graceful Art of Falling! Bookmarks will be handed out, and I will be participating in a student panel discussion about barriers and access for students with disabilities on campus.  Come join us!

Book Review

Below is a recent review of The Graceful Art of Falling:

"This book will bring you comfort, tears, and hope. Without having to know the author, you can hear her voice as she recounts her experiences with MD, good and bad. There are parts of this book that make you root for L. White while you are silently cheering for her as you feverishly read through the chapter. There are parts that make you hold your breath and say a prayer for her. There are parts that make you feel like you are right there next to her and wish you could reach out and offer her a steady hand. Then there are parts that make you envious at the amount of strength and bravery this woman goes through everyday. You wish you had half of what L. White has. This book makes you hope for a future where MD has as much publicity and awareness as some of the more popular foundations. It makes you hope that there will one day be a cure for this disease. L. White is truly a brave woman and should be admired among all who read this book for giving us a look inside her head and what everyday life is like with this disease."


Have you had a chance to read the book?

Consider writing a review on Amazon and/or the AuthorHouse page.

I would love to hear your thoughts!

Preface

...Very few people are fully content in their lives all the time.  Everyone has negative thoughts; many feel as if they can’t make it through at some point or another, and I think it would be a disgrace to my experience not to share my most shocking and shameful thoughts... I believe a book solely about my positive thoughts on my good days would not be truthful, and would not resonate with those who struggle from time to time. And we all struggle; we all have our problems.

To read more, buy the book here.

So Many Muscle Disorders

The main reason I wrote The Graceful Art of Falling was to bring awareness to the many muscle disorders.  I recently learned the local MDA provides services for 40 different muscle diseases- and there are many more.  Check out the amazing blogs below which have been written about experiences with several types of muscular dystrophy.

Limb Girdle MD

Becker MD

Duchenne MD

Nothing is impossible

So amazing! Maickel Melamed finishes the Chicago Marathon!

http://news.yahoo.com/video/chicago-marathon-final-runner-maickel-112325532.html

Support Group Meeting

On Monday night, I attended another support group meeting.  The group meets once a month, and depending on the day there can be anywhere from 3-10 people there.  Individuals who have a muscle disorder, those who are care takers, or those who have family members with a muscle disorder often attend the meetings.  At this meeting we had a very good discussion about the challenges we face as individuals who have muscle disorders.  One main concern mentioned was, that doctors don’t tell us what’s going to happen to us.  This is not a concern of mine- as you will read in my book- I am quite certain that I have been better off and had more will to keep pushing forward because I ignore what is “supposed to happen.”  I will continue to do this for as long as possible.  Additionally, doctors can’t always tell us what to expect.  The disorders vary so greatly, and even within a specific muscular dystrophy the symptoms can range significantly.

The other major concern noted was, not knowing how much we should exercise.  It is true that vigorous exercise can damage muscles which, in our case, may not recover.  Several types of exercise were encouraged from other group members.   Some of these included: working out with a personal trainer/physical therapist, doing aquatics therapy, and practicing hot or warm yoga (this is a favorite of mine!).  One gentleman shared that when he was first told he had MD, he was afraid to exercise- he thought he would damage his muscles.  Because of this fear, he developed illnesses like diabetes and high cholesterol.  The body is meant to be in motion, it’s meant to move.  For those of us with muscle disorders, loss of strength, and loss of coordination, this can be a serious challenge.  To the extent that we can, though, we should all try to do some physical activity.  

One important point we kept coming back to at the support group meeting: even though we all have different muscle disorders, our experiences are so similar.  We experience challenges in daily functioning, we often experience depression, anxiety, and there’s always worry… even if we can keep the thoughts it the background most of the time.  The future is the hardest thing to think about because we really can’t know what to expect.  We don’t know what our lives might be like, we don’t know what other functions might be lost, and we don’t know how bad it will get. 

Disability Awareness Month

Many places, including New Mexico, have declared the month of October Disability Awareness Month.

See if there is anything going on in your community to celebrate, or learn something new about a physical or mental disability...

The book is available!

The Graceful Art of Falling is available for purchase!  Buy it here.

Woohoo Healthcare Reform!

The Top 5 reasons I'm stoked about Healthcare Reform:

5. Individuals who have NEVER had health insurance in their lives, will be able to access health care.

4. Insurers can't spend more than 20% of premiums on their administrative costs; 80% needs to be spent on my healthcare.

3. Healthcare plans have to cover preventative services like cancer screenings and annual flu shots at no cost to me.

2. Insurers can't charge me more for an individual insurance policy simply because I'm a woman.

AND the number 1 Reason:: Starting January 1, 2014 insurers can no longer deny coverage or raise premiums because an individual has a pre-existing condition. It's about time!

The book has been sent to the publisher!  

It should be available for purchase in a few weeks!!

Walking to Class

Below is another preview of The Graceful Art of Falling- due out Fall 2013!

    Lynchburg didn’t get much snow, which was good for me.  Unfortunately, I didn’t realize how much freezing rain and of course, ice, Virginia gets.  We didn’t have many winter weather days either, classes were only canceled a few times throughout my four year stay.  What was frustrating was that classes would be canceled for an inch of snow, but not when the entire campus was a sheet of ice.

    Ice and I are not friends.  When it was bad enough, I would skip class, sometimes just my morning classes until they could get the sidewalks cleared up.  I don’t know why I went to class at all on one particular day, maybe I had a test, but I can’t remember my reason for trekking out.  I only remember this day because something mortifying happened to me, and at the age of twenty, it may as well have been the end of the world.  

    Our campus had a main section called “the dell.”  This was in the center of many of the main buildings and dorms.  In the center of the dell was a circle of benches and flowers where all the sidewalks which extended from the buildings met.  This convergence of sidewalk was about half way from my dorm to the building I had class in.  Not a long walk by any means.  It was a small campus.  

     I bundled myself up and put on my winter boots which I didn’t often have to use at school. They were heavy duty boots, my parents wouldn’t have it any other way, they had a thick rubber sole with strong grips meant for walking on ice and snow.  I stepped out the front door of the third floor in Tate Hall and noticed that everything was covered in ice.  Wonderful!, I thought.  It was obvious that someone had made a pretty feeble attempt to throw sand down.  I can’t explain my annoyance with places that use sand as a means of melting ice.  Sand gives a little bit of traction, but it quickly is washed (or wiped) away after a few people walk through it.  Being from New England, I know that the only thing that works on ice is SALT. 

    I started to walk to class.  So slowly you would think I was 110 years old.  I realized about ten feet from my dorm steps that walking in the grass would be a better idea.  Grass doesn’t usually form a solid sheet of ice like sidewalks, so I moved into the grass and continued my slow and steady pace.  When I got to the center of the dell I had to cross to the opposite length of sidewalk- there was no way to stay on the grass.  I needed to go straight across and the benches were in a wide circle around the outside.  There was nothing for me to hold on to.  I paused for a second weighing my options.  I decided to go for it.

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!

The 2013 MDA Show of Strength Telethon is scheduled for this Sunday, September 1.  The MDA has been using telethons to raise money for muscle diseases since the 1950's!  The first Labor Day weekend Telethon was broadcast in 1966.  The fundraiser has raised nearly $2 billion in the last 46 years in order to advance research seeking treatments and cures for muscular dystrophy.

The show starts at 9pm EST.  For more information check out the MDA website.

The Baggage We Carry

Below is a sample from The Graceful Art of Falling, due out Fall 2013!

           I remember the day we met like it was yesterday. I was standing outside of our locked classroom door the first week of classes in the fall semester. He had his motorcycle “gear” on, and it reminded me of the attire race car drivers wear. He came over and started talking to me, and I thought, This guy is going to ask me out someday.

            I wish I could say that this was the love of my life, that we fell in love, got married, and are still happy to this day. That was not our story. What was significant about this relationship, though, was something it brought to my attention. I am a firm believer in “you always learn something from a relationship.” What I learned in this particular relationship (besides not to trust a guy when he tells you he’s divorced) is that many of us have some issue in our lives that we think of as baggage; it’s what will make us unattractive or appear damaged to the opposite sex. For some guys it might be having a child, a crazy ex-girlfriend, no career path, or significant credit card debt. For Jared, it was his “divorce.” We had this kind of conversation many times:

            “But do you think you can be with someone who has been divorced?”

            “Yes. I have a chronic, progressive disease that I am asking you to be okay with—I don’t have a problem with your divorce,” I would say.

            “But it’s not the same,” he would reply.

            No, it’s not the same. Because really the divorce, if it was actually a divorce and not a current marriage, is something that will eventually be over. Even with a three-year-old son, of whom he shared custody, his ex-wife would only be a limited part of our life. In fifteen years, when his kid is eighteen, one might never have to see her again except for huge milestones such as birthdays, graduations, or a wedding. I wish I could put an ending point on my disease. I wish I could say, in fifteen years I’ll be perfectly normal, still walking around, and everything will be fine. I cannot say this.

            He was adamant that his “burden” was much greater than mine, and even though he could deal with my situation, he never believed that I could deal with his. When I told him about my disease he researched it. I knew he would; he’s that type of person.

So when we sat down to talk about it, he said, “I’m not going to ask you the basic questions; I already did research on that. I know what the outcome will most likely be, and I know, even as you become weaker, your brain and your mind will remain intact—you will still be you.”

            I wish I could remember what he asked me. I’m sure it had something to do with the future or how I would see someone being involved in my future.

            After we broke up, I couldn’t stop thinking about this interesting state of affairs. I had spent sixteen years believing somewhere inside me, even if I didn’t outwardly admit it, that no man was ever going to be able to accept my condition and what that meant for my, and our, future. It’s not that I don’t accept it for myself. I do. I accept that I’m living with this; I accept that I will have to keep fighting a losing battle; I accept that it’s okay to be scared about my future. I accept that if and when I end up in a wheelchair I will be sad and feel as if I’ve lost my independence. But I still couldn’t accept that someone may choose to spend his life with me when this is my fate.

            I was honestly okay with the “divorce.” Obviously, it could complicate our relationship a bit, and it might make some situations more difficult, such as holidays or disagreements on parenting techniques. There would most likely be situations that would make me unhappy, but I could look past that to be with someone who was as amazing as I thought he was. It just wasn’t that big of a deal to me. I was actually a little excited that he had a son. I realize that many guys might want at least one biological child, and if I couldn’t give that to him, it would be okay because he already had his son.

            “I am stronger than you think I am,” I would tell him.

            Even though I disagreed about the severity of baggage a divorce was, I understood where he was coming from. It’s exactly how I feel; despite what people say, they won’t really be okay with it. I realized, from this not ideal relationship, that if I was honestly okay with something he thought was such a big deal, it could be possible that guys I’ve dated and the guys I will one day date will be okay with my circumstances just the same.

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