Wednesday, April 24, 2013

Another year has passed.....

I cannot believe it has already been a year since i last updated this blog.  What can I say?  I have been busy living and loving it!

Michael and I were married on January 1st. A simple, intimate ceremony in the Edisto Memorial Gardens located in Orangeburg, SC.  I could not be happier. He is my soulmate and makes everything a little less complicated.  I like happy!  We bought a cute little house in a small town outside of Orangeburg call Cordova.  And it is just perfect!

As far as my surgery from last May, it was a complete success.  All he ended up doing was cutting the nerve and the dead piece of tumor off and viola!  It was almost instant you could see a weight lifted from my face. It was too swollen inside for Dr. P to reroute the facial nerve, but ah God did that for a reason, it wasn't need.  A fwe months later, my smile begin to come back to "my normal."  I am so good with that!

My face still gets tired from time to time and will "freeze" up, but nothing I cannot deal with. It happens.

Oh yea- I had my left eye fixed again too (November 2012)!  Lol Cheek enhancement and tarsel lift. That healed up great too! At least my eyes are more even now.

I was due to start NIH in May of this  year. A governement funded NF2 study.  However, something has come up (will disclose at a later time) and I had to move it to the beginning of next year.  This will help aid in the rising medical costs associated with this crap and hopefully help scientist learn more about our tumors.

For now, I sign out, but keep on smiling and keep on living!  :)

Friday, May 4, 2012

Touch Up

Here we go!  May 9, 2012, I have to go in to finish what was started in 2004.  When the left AN came out, Dr. P had to leave a dead piece of tumor on the facial nerve to preserve it.  It did heal up and was fine for a few years, but started fading in and out two years ago. Well, come January 2012 it was pretty much done.

I had a facial EEG a few weeks ago and it showed how week the nerve is and that is dying.  Dr. P. said it is better to do it now verses later. So, Wednesday, we will crack the head and go get that stupid dead tumor and repair the facial nerve. This is the same thing I had done back in 1997 with the right side and it worked beautifully, so I am praying for similar results.

Healing time from surgery, about 2-4 weeks estimated.  Healing  time for the nerve to regenerate and grow, about 6 months to a year. All I know is by the time me and Michael are able to get married, I should be smiling big from inside, out!

With my awesome God, friends, family and fiance', I will conquer this one too! NF2 WATCH OUT!

Thursday, February 2, 2012

Time Flies!!

Well lookie here, already 2012?! I haven't posted in over a year!! lol Same ol stuff-- but with a cherry on top! I have met a wonderful man who loves me just the way I am. Michael and I met 5 months ago and it was just love at first sight! We both know God brought us together. He put an engagement ring on my finger three days before Christmas! We will take our time and enjoy each other, but hopefully be officially married by the end of 2012. Then I will be a wife, a stepmother and hopefully a mother-to-be will soon follow. Loving life!!!

I graduated Ashford in June of 2011. I was going for the MBA, but after one class, realized my heart was just not into it. I also didnt want to accumulate more student debt! ha!

Health wise- all is stable. My brain has been stable since 2004 and my spine, since 2008. All I can say, is thank you God for watching over me. We have to monitor it yearly, Michael went with me in November to get a taste of it. Think he was more patient than I was! lol I still deal with my my facial paralyis-worse when I am tired, but I know the nerve is weak. Just one of them things I have to live with.

I will say this NF2 is what I have, but it does NOT have ME! I refuse to let it. Live life day by day and too the fullest and embrace what is in front of you, that God blesses you with daily.

Wednesday, November 24, 2010


Medrol (steroid pack) is working! Got my grin on this morning! Tearing my mouth up but good stuff and to smile --well it is worth it! Bummer that it is the nigth before Thanksgiving and I want to be out seeing old friends and can't because to alki on meds!!! Too much temptation to go and drink a coke!! lol

Tuesday, November 23, 2010

November 2010

Well, it has been awhile, but life has been good and kept busy with work and school. I will graduate Ashford University online August 2011 with my B.A. in Business Administration.

September was time for my yearly MRI scans and praise God, they were stable for another year. Two months later, I emailing my doctors back. My face was going weak. So they, put me on a Medrol Pack, but it didn't help and I thought well, ok- as long as I have a grin, I am ok. I woke up yesterday (11.22.10) to a frozen left face! I was like wth?! I emailed my doc as soon as I got to work and he made the order for another Medrol pack. If this does not work, I have to go in for a facial emg to find out what in the world the nerve is up to! GOOD NEWS! it is NOT a tumor! Inflammation of the nerve most likely, but will it damage it more? I never know. The bottom corner is jerking a little, so that is a good sign. I just have to take it one day at the time and pray it heals so I don't have to have more surgery or get on Avastin yet! We are still going to have the Avastin talk if I have to go down to see them.

So i pray to God for the meds to work! At the same time, I thank Him for my wonderful mom and friends who love me just the way I am. I guess when I got my beautiful smile back in full force a few years ago- I smiled to much! lol It will be back- just give it time.

Sunday, September 6, 2009

Just a Touch-Me-Up!

I had another eye surgery August 13th! The result is beautiful and I love it! Want the right side done again now! ha!

I got the implant inserted again and lifted up to help the eye close more and restore moisture. Dr. Howard also closed in the corner a little more and I am glad he did! It is awesome! I healed rather fast ths time, got it done on a Thursday and black-n-blue was gone by Sunday. I did take my time at work and worked half days for a week. I am so starting that from here on out. I was pushing myself to hard and not letting my body heal; that is the most important thing is getting me back together, so I gotta remember that!

On a side note, another one bites the dust! Guess me and Kenneth were not meant to be either. Dude- where is my knight? I know God will send hm my way when i am ready to embrace it. Love sucks!

The knee healed up and so did my arm- for now! Cortizone seemed to help both! TMJ is stable! lol Good -to much normal pain for me!

Tuesday, June 9, 2009

Me- Normal?

Well I figured this is what it was, but once I emailed Dr. P., he wanted to see me again. I was having major aching pain in my neck area. I have TMJ also and it popped out really bad like 3 weeks ago. The pain started right after that. It was a given, but with my history; I don't take chances.

He wanted to see me ASAP to determine what the pain was from. A minute after talking to me and feeling my jaw pop, sure enough, TMJ symptoms! DUH! lol But I love my doctor and I was relieved to get his confirmation! He told me to see an Oral Surgeon for relief procedures and gave me some pain killers- yup! I am good!!!

I asked him how in the world I got something "normal?" I don't think I really know how to deal with anything not NF2 related. It is different I will tell you that much, but welcomed.

My tumors have never grown that fast and I just knew that it couldn't change in a week's time. I am very thankful for that.