A new journey...

Most of you have heard by now that I have been experiencing severe weakness and pain in my shoulders and upper back since Bella was born. I began to notice that simple tasks such as lifting Bella, drying my hair and putting dishes away were becoming increasingly more difficult. Where this was annoying and inconvenient, I didn't think too much of it at the beginning. But by the year's end, it started to concern me. And at the beginning of 2010 I decided to see a doctor. I was immediately referred to start physical therapy. A few weeks into my PT, I found myself questioning if what I was doing was even worth it. In my gut, I felt like there was just no way any (relatively) healthy, active, 28-year old just looses the ability to lift their arms. (Even if you have never worked out a day in your life...I bet you can still lift your arms above your head.) I was convinced something else was going on. So I went back. This time I was referred to a sports medicine specialist. This doctor took one look at me and said..."I believe we are dealing with a version of Muscular Dystrophy called FSHD." FSHD stands for Facioscapularhumeral Dystrophy. It is a genetic disease and is a version of MD that primarily affects the face, scapula's and upper arm areas. Upon hearing the words "Muscular Dystrophy," I lost it. I burst into tears as visions of "Jerry's Kids" danced in my head. (As a side note, FSHD is NOT the same as the MD that you see in Jerry's Kids. PHEW.) I was then set up to take a few tests to rule out other options such as severe nerve damage. After the tests for nerve damage came back negative, I was referred to the neurology department to get a second opinion. My meeting with neurology was nearly identical to my meeting with sports medicine. The neurology team took one look at me and said..."FSHD." So, after receiving two diagnoses for FSHD, I went in for genetic testing to confirm (or rule out) FSHD. Today, 5 agonizing weeks later, I received the test results. They were positive. Not a huge surprise...but still very disheartening.

So what does this mean and where do I go from here?

Physically speaking: This is still yet to be determined. I am getting hooked up with a team of genetic counselors at Kaiser as well as an independent organization called MDA.org. (Muscular Dystrophy Association) I am actually somewhat excited to start work with the MDA. They apparently will be able to set me up with a specialist who works soley on FSHD cases, a nutritionist, a physical therapist, a counselor, a support group, and even an advocate that comes to my place of business to make sure my workspace is ergonomically correct for my condition. Together I am confident we can come up with a plan on how to best manage this disease. There is even a slight chance I will qualify for a disabled parking badge. (I WIN! Just kidding.) Anywho, I will keep you all posted (in one way or the other) on my progress here.

Emotionally speaking: This is still yet to be determined as well. (Ok...I have to laugh at my comment right there...HA!) I feel like I've been slowly coming to grips with this reality for the past month...but, truthfully, up until today, I still had a glimmer of hope that MAYBE this wasn't my new lot in life. Boo. But I am thankful that I at least now know for sure what is wrong. This will help me move forward. The past 5 weeks have been some of the toughest I've experianced in life to date. I have battled so many fears, thoughts and emotions that today's news almost brought relief in a weird way. It isn't the answer I wanted, but at least I have an answer. I've said this to many of you already...but you would think that with God's track record in my life, it would be easy to trust that "in ALL things, He works for the GOOD of those who love and trust Him." But trusting Him isn't easy...it is a learned skill...only made easier by making it a moment by moment, habitual act. I forget so easily that despite every trial and "valley," I've encountered, He's always been there to walk with me, through, up and out of them. There will be good days and bad. Seasons where I barely think of my condition and others where I feel as though I am not able to think of anything else.

To quote a favorite line in a song played at my grandpa's memorial service, "All I have need of, His hand will provide........He's always been faithful to me." My hope is that I learn what it means to truly live by this statement...someone who is able to live life to the fullest, in true freedom, knowing that regardless of my circumstances, God will provide.