But You Don't Look Sick! GOOD, I'm NOT!

Define the word "Sick"...When I hear the word "sick" I think of fever, vomit, cancer, appendicitis or the flu...Anything where the body is a "host". I don't ever think about my crazy body being sick. I make it a point to tell anyone that asks me about EDS that I am "BROKEN", I am NOT "SICK". Don't get me wrong, on bad POTS (Dysautonomia) days, I can feel very sick, especially just before I faint!

In the past few months, I have come to understand that it is not always bad to be “broken.”  I know that I was born with Ehlers Danlos, it just never "kicked my butt" until 2009. A lot changed in my life when I started to feel icky frequently,  hurt like crazy, fainted often, and could not find any answers. I realized that I had to "pace" myself; there was WAY to much "junk" in my life. I realized that I spent way to much time with people that didn't really matter and doing things that really weren't important in the grand scheme of things. The day I met Dr. Lavallee and we talked about EDS type 3 and Vascular EDS, I was horrified.  I asked if it is likely that I have VEDS, he said "You show significant signs; I recommend that you live your life the best that you can. Ila, make sure that you always have your 'house' in order and that your life is right with God and those that you love and care about". Those words still echo in my mind. It was sobering to learn there is no cure for Vascular EDS; if you have it, you are going to die! Aren't we all going to die? Do we ever know when? Do any of us have a promise of tomorrow? NOPE! We are only guaranteed this very moment, right now! I know, it can be a scary thought, but it's called reality; healthy, sick, rich or poor, old or young; any moment is potentially our last. During an in-depth soul searching, I realized that it didn't matter if I did or did not have VEDS and "knowing" for sure (via genetic testing) would not benefit me. 

You are reading a blog of a girl that grew up in the Funeral Home business; aside from that, my Mother died when I was 13, my Grandmother when I was 17 and My Papa when I was 20...Death and mortality are not strangers to me. As long as I can remember, I have always been the person that forgives and asks forgiveness frequently. When I admire someone, I tell them frequently. I treasure the important people in my life. I say "Thank You" far to often, I say "I love you" without hesitation (when it's true) and I think hugs are sometimes the best medicine (especially if they "crack" your back). Don't get me wrong, it's not all sweet, I don't just say what I think or feel when it's positive... I always "tell it like it is" and I get along best with others that do the same. I believe that life is far to short for dishonesty and "going with the flow". I call a spade, a spade. I do choose to always use class and tact when speaking my mind. I believe"I am who I am" because of circumstances of my life (See above if you have already forgotten). I've never taken life or people for granted. However, after my first conversation with Dr. Lavallee, it hit me like a ton of bricks; somehow, someday, I AM going to die and buster, I better be ready! Whew, that hit harder than any "hell, fire, and brimstone" sermon that I had ever heard!

So many things Dr. Lavallee said to me that day had a profound impact on my life! I left there feeling like Tigger after gulping a Red Bull! #1 I had a diagnosis #2 I had HOPE #3 I had "some" idea of the challenges ahead of me #4 I knew that I had a great Doc that would be kicking my butt and holding my hand every step of the way! When I left that office, I wanted to do back-flips! I was thrilled to know that I am BROKEN, I am NOT sick! 

Over the past 13 months, I have made significant progress! I have quit smoking "real" cigarettes (396 times!) and I am working on kicking the "fake" cigarette habit! I work out more than I have since my gymnastics career ended 17 years ago and I am enjoying it. In the beginning I struggled with the fact that getting better was solely up to me. I quickly learned that eating right, exercising/strengthening and pacing myself are not options for me, they are requirements.  Most of all, I am learning how STRONG I am and how weak I have been.  

On a happy note, being "broken"  has allowed God to work in my heart and life, it has enabled the fragrance of His love pour into and out of me. Per human nature, our hearts and lives are like little fortified “castles” where self and ego rule. Until I was  broken there was little room for anything but my ambitions, and desires. I thank God for utilizing my "brokenness" to strengthen his presence and "kingdom" in my heart and life. My body may be "broken" but that's not all. I have been a christian since I was a child but I have never experienced the power of God in my life as I have in the past 13 months. I have been broken through repentance to experience the renewed beauty of God's Peace. Broken in weakness to experience the power of God's strength. Broken through suffering to experience the sweetness of God's grace. Essentially, Being Broken has made my life and heart for Jesus stronger than ever before.

There is no “cure” for EDS and I doubt they will find a "cure" in my lifetime; it can't be completely "fixed" either. I thank God for blessing me with 2 amazing Doctors; one who "understands", he's broken too; he's in Indiana, but only a phone call away when I need him. My local Dr (Amnott) is fantastic, he does everything he can to help me feel better and I have had a significant decrease in pain since I started seeing him. They are very different with their approach but they both motivate and inspire me, they both pick on me, make me smile and they both offer me hope.  The GREAT Physician has always known I have EDS, he made me this way! I have Ehlers Danlos and I thank God everyday that it does not have me! I am thankful for my amazing EDS friends that I have met on this journey. As my dear friend Molly says “It’s wonderful to have friends that ‘GET IT’!” I am grateful for my best friends Val (her hubby Matt) and Jeri that have heard the question "is this normal?" at least 2500 times and always answer. I am so thankful for my amazing husband that does his best to understand and my children that love me no matter how I feel! Actually, I am thankful for the abundant blessings that being "broken" has brought into my life thus far!  I pray the journey that lies before me is long, adventurous, fun,forgiving and fruitful!

Gentle Hugs,

Ila

P.S. What inspired this blog? I had a conversation today that provoked me to reflect on the significance EDS has had in my life and to reexamine my goals for the future. A few minutes following that conversation I turned on the radio, one of my favorite songs was playing: The Hurt and the Healer by Mercyme. I always cry when I hear that song because it makes me think about how God has always used every loss or “tragedy” in my life for his glory. It brought to mind my favorite “Ila-ism”...My life is a canvas, today is just a brush-stroke, all I can see today and the past. However,.God is my artist and he sees the entire masterpiece. I pray that God continues to bless and utilize this “Broken Masterpiece” so that I bring him glory in everything I do.