am I broken?

@#^%^&^%$%&^%&#$%@#&#

pretty much sums up the current state of activity going on inside my noggin.

Soooo I was supposed to run a 5k 2 weekends ago, remember that?

yeah, me too... how could I ever forget staying up until midnight working on my tutu that would have completed my totally awesome Wonder Woman costume. To run in. Cause I'm a bad ass.

Welp, didn't happen folks... I woke up bright and early Saturday morning with a fever and a head cold and my body told me I wasn't going anywhere but bed. At the time I was super bummed but the next few days reminded me that only God sees the biggest picture and even though I may not always like the road He pushes me down... HE knows what is best for me.

Monday October 22, 2012

I go to the doctor.

I NEVERRRRR go to the doctor.

like ever (Taylor Swift style).

I went to the doctor for one particular non life threatening relatively minor thing and come out of my appointment in.... i don't even know what. I felt dazed, heavy, kind of like I wasn't actually present in my own life. Like I was watching in from outside, weird i know.

I've never had any health issues... My medical record probably reads something like:

birth
cold
cold
ER visit to remove nose ring (yeahhhhh don't ask)
cold
gave birth

prettyyyyyyyyy simple stuff. and now this...

I get an EKG, I have to get labs, then I go get a chest Xray, then I'm scheduled for a ECHO (heart ultrasound), and I need to get a heart monitor put on.

Marfan syndrome is a disorder of the connective tissue.  Connective tissue holds all parts of the body together and helps control how the body grows.  Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body. 

Marfan syndrome features are most often found in the heart, blood vessels, bones, joints, and eyes. Sometimes the lungs and skin are also affected.  Marfan syndrome does not affect intelligence.   

About 1 in 5,000 people have Marfan syndrome. This includes men and women of all races and ethnic groups.

What are the features of Marfan syndrome?Because connective tissue is found throughout the entire body, the disorder manifests itself in many body systems. The most common features are:

• Tall stature - affected people are usually, but not always, taller than other people in their family
• Arms, legs, fingers and toes are disproportionately long, as compared to the trunk
• Loose-jointedness
• Indented or protruding chest bone
• Scoliosis
• Flat feet
• Nearsighteness
• Dislocated lens

What is the most dangerous part of Marfan syndrome?

There is no cure. People with Marfan syndrome are at risk of aortic enlargement. Without proper management, i.e., drug therapy and lifestyle modifications, the aorta (the large blood vessel that carries blood away from the heart) is prone to enlarge and could dissect (tear) or rupture. An aortic rupture is usually fatal.

This is NOT what I have been diagnosed with yet... but it IS what my Doctor thinks I have. I had my ECHO yesterday and as soon as she reads it she will let me know if I have this or not. If I do have this, it's not a death sentence... I can live a pretty normal life. I just have to go to the cardiologist regularly as my aortic valve could rip at any time & I would be at a high risk for aneurysms. No more running tho.

I feel so uncomfortable asking for prayers for myself, so I will ask for prayers for Landon. He needs his Momma. 

With Love,

Leia & Landon

P.S. totally gonna be rockin' the weird blue jelly heart monitor on my birthday next week. par-tay.

Rockin It... Like a boss.