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.

Good!!!

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

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.

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!

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.

Yes, No......Maybe. Will see in time

I have been approached a few times about having children or not?  There is a 50/50 chance that my offspring will inherit the NF2 gene from me.  Does this bother me? Of course.  Will it stop me?  No.  My best friend, Dana said it all a few years ago when I went to her crying about it, she said, “Shanna, you can’t not have kids just because of the NF2.  If anyone can get them through it, it’s you.”  She is right.

 

I am the “half glass full” girl.  I like to think they won’t get it from me, but if they do, we can watch it from birth on.  With me, I was the first and had to be diagnosed.  Since it was so rare and unheard of, it just took longer to diagnose after I first started showing symptoms.  They wouldn’t go through that.  I am big on my faith that if God wants me to be a mother, I will be.  If they get it, we will cross that bridge when it gets here.  If they don’t, it stops there.  Nf2 does not skip generations and that is a wonderful thing to know.  I will not waste my time having testing done to find out if the child has or doesn’t have the NF2 gene.  Two reasons, it is risky to the pregnancy and totally pointless in my book.  I am not going to abort a fetus just because of a gene! That is extreme and should only be used for extreme circumstances.

 

Having children is a blessing, not a trial and error process, or a risk analysis.  I may or may not be able to conceive and it would have nothing to do with NF2 because I do know others with NF2 who have beautiful, healthy children. So, I don’t know.  I've never tried.  My point to others is that I could have a child without NF2 and with something totally different.  Would I give them up or trade them? NO!  They would be mine, my gift from God.  Every child is precious and every one has risks, but does that stop us from having a family? Again, no.  I just don’t see the relevance NF2 would have over that and never will.  Yes it can suck totally, but I am glad I am here and I wouldn’t change my life.  I very thankful for what I do have and even the person NF2 has helped me to become.  I would be a lot different, had I not of had this.  It is what I have, not who I am.

 

I recently read the men with NF2 can reduce the chance of passing it on through invertro.  I was asked about an egg donor and I am like, uh…… No!  Lol Then they wouldn’t be my children.  NF2 I know how to handle.  Something else could spark from a different egg and be a whole new ballgame.  I’ll take my chances with my own eggs.  In God’s time, not mine.

 

I don’t want to focus on the future.  I don’t want to rush getting married again.  I don’t want to rush having children.  Yes I am 29 years old, but I have my whole life ahead of me and I will focus on that when the time is right.  That time is not right now.  This is my time, since I missed so much when I was younger.  I am very happy right now.  I am healthy right now.  That is what I am focusing on.  I’ve said it before and I will say it again, one day at the time is all I can do.

Good news!

Friday's appt went smooth!  Dr. P came in there with thumbs up & abig smile!  STABLE! He will see me in a year.  I laughed and said if my paranoid self can wait that long!  lol  Nah, better safe than sorry in my book.

Thursday night we headed out after Jessica graduated OCTC, as we were getting ready to leave The Bank, I stopped to talk to my friend Christy.  See, I used to car pool Christy and a few others right after I lost my hearing.  I never in my wildest thought this would come of it.  Christy asked me if I knew what her major was?  She is in Speech/Language path and no, I had no idea.  Just her being around me then made her want to help people like me.  She told me if she could help just one person, then she has done what she set out to do.  She helped me and I tell ya,  that one made me cry!  I always hoped that I could create awareness and inspire others to help and just maybe  I am doing it more than realize.

I love you Christy and thank you for sharing that with me!