Thursday, June 28, 2012

Bad Days Gone GOOD!

Last night I gathered the courage to sift through my most recent hospital journals and came across some very interesting entries. This particular entry struck me in particular because I can vividly remember how i felt the exact moment I wrote it!

[3 Days after tracheostomy: Written conversation to Psychiatrist]

"I feel like I'm losing my mind! Please make it stop! The voices in my head tell me crazy and scary things. I am afraid to go to sleep at night and I can't decipher whether I am awake or dreaming. I was having a lot of pain over the weekend but it is better today. I was having a large amount of secretions and so every time they had to suction, it would irritate the stoma site (the opening to my trachea) and cause it to bleed. Fortunately they haven't had to suction much at all today. I was having pain in my ankles and legs the last couple of days but now that I am out of bed that has been better as well. My physical therapist is very pleased with my progress. I could have done more but he did not want to push me because it was my first time out. Sometimes I get very nervous and feel like I need to go back on the ventilator because I am short of breath. Being out of bed has helped with that as well. Walking really helped today. Some days I feel like I'm stuck in prison! I just want to get out, feel the fresh air, eat a slice of PIZZA! My numbers look good, but being tied down to the bed and stuck in this room with all the IVs and stuff is starting to make me feel insane!" 

Doctors had then predicted that I would need 24/7 in home nursing care for the remainder of my life. If only they could see me now, haha! This is certainly not the first time doctors have told me that I defy the laws of medicine, lol. I have overcome many obstacles since that time both mentally and physically. It was not an easy journey but I took small steps, one day at a time. At that point it seemed as if there was no end in sight. And somehow here i sit, nearly two full years later, with a contented smile on my face. I have won again! ;)

The Life I Live!

My name is Christophe and I am from Norwood, NJ. I first became sick when I was six years-old with what I recently found out to be a rare degenerative muscle disease called "Myofribullar Myopathy" - with a mutation of my Desmin gene. Less than 100 people in the country have been diagnosed, and there are virtually no clinical trials underway at this time. MFM is a progressive disease in which my muscle strength progressively weakens over time. I walk with the use of AFO leg braces, and I can barely climb a set of stairs. Over the course of my life, I have undergone a number of serious and complicated surgeries, often accompanied by extremely harsh side effects. When I first became ill, I was diagnosed with complete heart block and had a pacemaker implanted.  Since that time I have had 2 heart transplants, 1 kidney transplant, a Cholecystectomy (gall bladder removal), liver stones, diabetes, and most recently a tracheotomy. My kidneys failed after I spent 8 long months in the ICU at New York Hospital. As a result, I was placed on dialysis for 3 painful years. I currently have a trach tube in my neck and I sleep with the assistance of a ventilator every night. I have dealt with illness all my life and as difficult as things have been, I try my best not to let it affect my attitude and daily life. I love to laugh and make jokes!  With the support of wonderful family and friends, I do my best to stay positive and hopeful that some day we may find a cure and hopefully a better understanding of this extremely rare disease. My mother is my angel! I would not be here today if not for her. I try to live a very active and social life and refuse to allow my limitations to hold me back. Most people have a hard time believing my story, and to be honest sometimes I have a hard time believing it myself. I have stared death in the face several times and refuse to give in. I have never been one to get down on myself or look for pity. We create our own destiny and I truly believe that. After all these years, I would like to share my story with the world in the hopes that anybody going through a similarly difficult situation may feel inspired and motivated to NEVER GIVE UP! I intend to spread awareness of my condition and organ donation. I would also like to give a voice to every nameless, faceless, illness that may be affecting someone out there and let them know that they are not alone. There is no question that THIS is my purpose in life!