A JOURNEY WITH NO REAL DESTINATION

In December of 2010 I was diagnosed with Lupus/Mixed Connective Tissue Disorder. In March of 2011, I was diagnosed with Ehlers-Danlos Syndrome, type 3. The MCTD/Lupus Dx was incorrect, they should call EDS "ACTD", (All Connective Tissue Disorder)!
Since my Ehlers-Danlos diagnosis, I have read a few wonderful blogs that have inspired me and touched my heart. One blog brought me to my knees; I cried, my heart broke, I laughed, I smiled and I identified with this Katie's story. Reading her journey made me realize that I wanted to share my own.
Details are not something I spare and I have never been a girl of few words. I hope I inspire you, educate you, motivate you and touch your heart. I hope by writing this, I learn, understand and accept my new journey...Is there a destination?

Friday, April 6, 2012

Some Photographs.

OI- One of EDS's closest family members! 
I love this quote! I am so thankful that my Doctor doesn't
try to give me a useless pill to try and cover up my symptoms
that can not be covered!
My dear friend Heidi. I wish I also knew her as a Dr but
maybe I'll have that opportunity someday! 
Dr. Rodney, he is the head of the Rheumatology Research Center
In England. I was so honored to spend some time with him and learn learn learn!

Some of my new friends from the conference.
Front: Me, Sweet Molly, Back: Gary-my friend that lives about 20 minutes away!
Let's not discuss the girl in the neck brace! Amazing Paula and Troy Winkler!


Me with Troy Winkler. He's an amazing person!

Me dealing with some issues for Miss Molly!

My dear friend here in NY, Elisa. God bless her for
listening to all of my weird stories, EDS and otherwise! Also with my faux sister-
In-Law, Christina Arce Bagaglio.

The man that keeps me going! Thank you Andy,
You are my biggest fan and I LOVE you!!!

I can still hang!


My Aunt, one of my biggest inspirations. She has severe,
debilitating Rheumatoid Arthritis. You think it stops her? NO WAY!
We talk daily, fight occasionally and love unconditionally. 

I am going to be featured in a poster for EDS Awareness. This is one of the photos,
sorry, they haven't been edited yet. Once they are, you'll only see joints....Hopefully they will
never know it's Ila! 

No comments:

Post a Comment