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

Scar Tissue

Well let see its been a few month since I have been on here and wrote anything. I have had my ups and downs in the past 6 months, while they are mostly good. I have went down a few dress and pant sizes since last time and am able to fit into an xl no more Women section for me!!! 

My parents are also back on track while it kind of dissipated for a month or so while Mom got two surgeries back to back. Her back surgery first then a week later was her foot reconstruction. It has been a heck of a road but so proud to see my mom up and walking again and also down from a size 24 W to 20!! :)  

I have been dating Tony for a year and a month now and I couldnt be any happier!! We celebrated our 1yr by seeing Iron Man 3 which was amazing and then going on a 7 day cruise to the BAHAMAS!!! That trip was amazing and never would have I imagined that I would be able to take a trip there and Tony borught that dream to life for me. He makes me more happy then I have ever been.

I am extremely lucky to have and so many people in my life that care for me.  As I know I will need these prayers and love in the coming weeks and months. I have been feeling great with my headaches and eye  since 2011 when I underwent a small procedure to relieve pressure from a nerve in my skull. But about a month or so now I noticed the swelling and pain is now back in fullforce.

 The Swelling around the eye is the fluid and bone.

I have had Fibrous Dysplacia since I was born which is a rare bone disease where extra bones grow in the body and mine is around my left eye orbit. I have had about 5 craniatimies  since 2001 and looks as if I will be conquering my 6th!!! I emailed my neurosurgeon and my savior Dr. George Jallo who took over for Dr. Ben Carson almost 10 years ago. He has been there through all but one of my surgeries and I would recommended him to anyone!!!  Anywho it seems as though the bone grew around the artifical bone and hardware they put in in 2009. There is also some fluid around there as well which is causing pain and much discomfort.

However, I continue to be a trooper with this pain as I have had this as apart of my life for more then half of it so I can deal with it a little longer. I underwent a CT scan today so I should be getting a better idea of what they are going to be doing in surgery. For those of you who don't really know what it intales I can safely say it is gross. They have to open me from ear to ear, pull down my skin and chisle down the bone around my eye. I told you it was gross. But as I said before this will be the 6th I have had since 2001. It is really old Hat to me  and I know I have so many that will be there for me, and I love them so much for it. I know my parents and family have seen me grow with it over the years and how far I have come, but I know it can still be scary any time. But I know with my hero Tony around with my parents I think they will be fine and I will be great!!! My team of awesome hopkin docs will have me up and running in no time.  I will try and update on here with any news I have on the upcoming surgery and how I am doing. 

Till I Collapse

I was looking at old photos of when I was in middle and high school and I can see myself and how much I have grown since then. It have been hard and had its ups and downs but I know I have learned alot and wouldn;t be the stronger person I have become.  And I may have lost some people in my life since then but I know it only makes me stronger.

I have been through alot in my life with my best friend/grandmother losing her battle to cancer in 98, to my aunt losing her battle to MS in 09. It seems like I have been on the ups and downs of life in the past 15 years. When my grandmother passed away it was super hard to handle anything in my life. I lost a lot of weight and started binge eating and developed Bilema. I never really told anyone until recently but I think my brother had an idea of what I was doing.  As in this picture, I was skin and bones at that point as it was 6 months after Mom-Mom had passed on.

And I was able to get through that so what in which I still am missing her so much, but then when my aunt and name shake lost her battle to MS, I kind of lost it. I went back to eating and purging but this time I think it did quite the opposite and I gained a lot of weight such as the picture here shows. But I think since finding Herbalife I have lost over 36.5 inches and 5lbs. I can see the light at the end of the tunnel and knowing that I will be able to dance again.  and since beginning this blog, I can start to see a difference of what my body is doing. I'm shrinking :).

Thanks again for reading and encourging me to go on this journey!! :)

Milestones

Hey everyone I knew its been a few since I posted last but I have been busy with work and trying to figure things out with my career. As well as trying to get a handle on my life in general. I now am trying to get organized and work on studying and setting a date to take the Praxis I test for graduate school. I have a few dreams that I want to achieve in the next few years. The first is to get my masters in Autism Spectrum teaching. The second is I want to help as many people as I can with overall wellness and maybe open up a nutrition store.

Tonight I brought three people in to the new weight loss challenge that I and Tony are in. I am so proud of all of them for wanting to change their wellness!! Even some may have been reluctant to come they made the leap and I and as well as them are glad they did so.

In the form of progress I have lost 5lbs and 36.5 inches since Sept/October. Here are some more progress Photos. The left side are the new ones and the right is the older ones.

 

Staying Focused

I have been thinking about this new found confidence that I have about myself, and I truly love it. I weighed in at the weight loss challenge last night to find out that I lost 8.5 more inches since I started in the beginning of last month. This brings my total inches lost to 36.5. I can't believe it, I have tried ever since my junior year in high school to lose weight but to no avail.

 I also had a bad habit of purging after eating ever since I was 12 and my best friend and grandmother passed away. I wasn't ever diagnosed with anything since I really never told anyone about it until recently. But over time that developed issues with my digestive system. However, it seems that since on Herbalife I have been only getting better and less symptoms as I continue on my journey. I have also learned to channel my stress in different routes then eating.

With that being said, I have watched the show Dance Moms ever since it came on TV  three years ago. Most who have known me for a long time, know I was a dancer for 10 years, until I quit to focus on my school work and college. And since being away from it for so long, I miss it terribly and as I sit there and watch I can't help but want to do it again. However, I know at this moment I can't physically do what I use to. Yet, I am excited about this weight loss and gives me even more reason to lose weight and achieve my goal weight. I want to be able to dance again, and through this journey I will keep this dream in arms reach.

I have until September to get ready for the next year of dance at a friend's dance studio in which I would love to do Ballet and Jazz again. So I will strive to do my best and make this dream a reality.

New Year New Me!!!

Here it is the first day of the new year, 2013. I have to say that 2012 had it's ups and downs, but overall a good year. But I feel that I will make this an awesome year!! I have a wonderful boyfriend, family, and job. I have decided to achieve my dreams and work with children who have autism. I have come a long way through the past few years which my decision in careers. I have toyed with this idea of working with autistic chidlren and I have decided that its what will make me happy. And this year I am dedicating to making myself happy. I have put it off for way too long and it is time for me to grow into the person I want to be. I have put this into works when I decided to become part of the Herbalife family and I have lost over 28 inches from head to toe and I intend to achieve a lot more. I am down about 5lbs and want to get down 70lbs. This is my before photos I took of myself before starting my 24fit weight loss challenge!

I am hoping this will change a little each week. Thanks for all the support I have had through out the last few months. Everyone has been super supportive toward reaching my goals. Even when I may have not known what I wanted myself. Its awesome to know I have so many to depend on. :) This is it for this week but stay tuned for each week.