Life...ha

I have been away for the last week since surgery and I have been going through sleep cycles and taking the pain meds. But it seemed like since I have been out of bed I get a little bit better daily, yet I still hurt not in my head thankfully but in my heart for having the feeling of never getting back to normal. Maybe this is my new normal. I went to the neurologist and he said I could have a bone spur in my back causing the numbness, dizziness etc. He doesn't think it is MS but it could still be a possibility. My namesake, god mother, and one of the smartest women I had in my life had the same disease, and I know if I were to be diagnosed then I would push myself to not only get more fit then I am and work to stay active, something as my aunt did until it was too much. They really did not have the type of knowledge they do now back in the 80's. I would honor her and fight like a girl against this disease. I have overcome 8 facial surgeries whats another challenge.

When I think of the loved ones I have lost in my lifetime, the last few have been the most difficult. I never realized how much of a bond I had with my uncle until it was too late, he already was dying from pancreatic cancer. Cancer has been a huge factor in my life with my mom mom losing her battle over 15 yrs ago, my grandfather before I was born, and then my uncles who I was not too close to but they were still apart of my life. The first death of my mom- mom in 98 changed my life for the worst as I sought out a way of outlets using binge eating and having a bulimia type problem for over 10 yrs, I learned it paid me back big time in acid re-flux, GERD, IBS etc. But with all these issues, I decided I would grow from this and help myself by helping others. Unfortunately, my uncle passed 6 months after being diagnosed with pancreatic cancer, and again I took it rather roughly as I did my aunt before him. I regret not spending the time I had with them when they were here on earth. But I do know they are always with me. My aunt proves it every night by being in my dreams and butterflies and dragonflies always around me. My uncle always sends me a dime to let me know he is here with me.

My aunt's favorite singer was Neil Diamond, and I can always remember his version of Felis Navidad playing in her house while decorating her tree. Well this song I found the day my uncle passed and it has made me realized that they are all with me and guard me every day from straying from the path I chose to take. I still listen to Neil today and it feels like my aunt and uncle are up in heaven singing to me. I love you both MEMs and Uncle Bob!!!

https://www.youtube.com/watch?v=VI8FIm1Mrw0


I can say that I am happy I still have my mom, loved ones, family and friends, especially Tony to get me through everything that comes my way. I will face this and some other issues straight ahead!!!

Thanks for listening.

Surgery #8...

As I sit here on the eve of my 8th head surgery, I wonder what is in store this time. This is all old hat to me with opening my head and taking out bone etc. But this time, it is said to be outpatient and a breeze compared all the other surgeries of 8+ hours in the OR. This last surgery my plastic surgeon went in and took leg fat and inserted it into my head for cushioning and grow nerves to help bring life to the area. While being in the OR for over 10 hours, I have to say even if it was one of the easier ones, I have had a harder time recovering from it! Since the doctor took leg fat from my right leg, I had to learn to walk again, without being able to feel my leg. I have to go down steps one leg at time even months after surgery. I am slowly getting back to normal, but I am hoping this surgery tomorrow will be nothing! However, it seems my disease likes to go wild and surprise everyone.

Last year's surgery in July was a bit different story as I had an extremely bad infection in my sinuses in the forehead and the fibrous bone had grown through them. After a harry surgery and 9 days of hospital care, I have to say it was one of the tougher ones, but I bounced back fairly quickly. And all previous surgeries were pretty easy as they would take out bone, and put artificial up there, or try to fix nerves from other doctors negligence, but over all the worst one was in 2005 right before College. I had done well in the surgery itself, but once in the ICU my sodium levels dropped extremely low and my blood pressure was lower then that of the newborn across from me. I know it scared my family and friends, but after 24 hours I was able to reboot and come back.

What you ask is the disease I have??? It is called Monostotic Fibrous Dysplasia meaning: "A rare bone disorder characterized by benign bone growths which can cause very painful swellings and bone deformities and makes bone prone to fractures" Wiki. I was born with this and did not ask for the struggles it has given me along the way, as migraines, worsening eye sight, fractures, and deformity to the face. And many years of teasing in school. But I have learned to love myself no matter what I look like, go ahead make fun of me, I am OK with who I am and I am unique! I have to thank my friends and family for that love they have given me and to continue to me as I go through this. I always thought I was the only one in the world with this problem, boy was I wrong! After joining a group on FB I have learned there are lots of people all over the world who have not only the disease but in the same areas! I have read their stories and feel blessed to only have monostotic instead of polystotic which is more than one bone. I pray for those worse then me and learn from others to better my situation. 

I have to be thankful for my parents and brother who have been there every step of the way and continue to encourage me to achieve my dreams and goals of working with children with Autism. Also I have to thank my incredible other half, my rock, Tony he has been here for after tomorrow 3 head surgeries! He is always there if I need him, and picks me up when I fall. I only hope that this surgery will be the last for now three in a matter of a year is crazy. 

Thanks all for listening and I plan on blogging my recovery and my story on here. I may even write a book about my experiences. Below are Pics of this past surgery. 

XOXOXO 
Mary