Totally Inspired to get my head out of my REAR!

Last night was one of the weirdest nights I have ever had. The impossible has been done. I found another person with Paraneoplasatic Pemphigus (PNP), and she is ALIVE! Those who have followed my struggles with PNP and my Castlemans disease know that I have felt so alone in all of this as most of the people who have PNP die before you can get the chance to speak to them. Her name is V and she is the reason for me getting my head out of my ass. She is the reason I start this blog/journey today.

I think I have always been afraid to track my progress, set backs, and emotions through words because they are hard to look back at. Hard to see the pain that I was feeling at that moment and in general I just didn't want to be the "sick girl!" Not anymore. In most peoples eyes I am the "sick girl", the girl they pray for in church. The girl that when they pass by me in the grocery store they say to me, "Well it was nice seeing you, I hope you feel better." Whatever category you want to throw me in is fine. I will no longer pretend that I do not struggle every day with fears of the unknown.

The biggest issue that I have been facing latley is my most recent diagnosis of Constrictive Bronchiolitis. It is a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are plugged with granulation tissue. My lung function is now HALF of what it was and should be. The things I have always loved to do like workout, DANCE, and run are something I will never be able to do again unless I recieve a "successfull" lung transplant, or recieve some sort of divine intervention (MIRACLE!) :)
Walking hand in hand with my 3 year old daughter reminds me daily of how ANGRY I am for this dreaded lung disease. "Mommy catch me!" "Mommy lets race." words that would normally bring a smile to my face, now bring tears to my eyes. I push myself! Emily helps me stay strong and in charge of my emotions. I love her for this.

Looking up information on any of the 3 diseases that I have (Castlemans Disease) (Paraneoplastic Pemphigus) (Constrictive Bronchiolitis) you will find one common thread. The word that gets me every time...... Fatal. I have my moments but overall I have always remained very positive about the hand I have been dealt. So much so that most people arent even aware at how severely limited I am in my day to day life. I say this because I have never felt like it is my time to go. I have been told countless times that I have less than a year to live, even been told that I would be lucky to make it out of surgery. I am still here. Fighting with a purpose and a love for life. I would like to think that we have a loving, understanding, and patient god. I know him to be all of these. I know that no matter what path he has chosen for me to go down, or what time he chooses to take me from this realm the outcome will be no diferent by me not LIVING my life today.

Through this blog I made a promise to myself. To say the things that I want to be heard in such a way that it makes you question YOUR spice for life. To be honest and raw without holding back. Im sure not all of my posts will be uplifting and empowering but thats life and thats me. I would be lieing if i said I lived a life of optomisim, and fearlessness. I know I have never meet anyone as optomistic as I am but when your dealing with an illness of this magnitude, I dont think you could ever be too optomistic. My journey is just now begining. There has to be something left for me to accomplish out there.... I cant wait to see what that is!