Swimming Against The Current

Yesterday I got all my staples out and Dr. Pilitsis said everything looks good.  I couldn't have asked for a better surgeon.  She is the kindest doctor I have ever met and she has helped me so much.  I am actually upset I wont be going back to NY to see her because I feel like she's more of a friend than a doctor.  Wednesday, I am seeing Dr. Novak to get "turned on" and programmed.  I am excited to see how it goes with both sides this time.  I cant wait to open my hands!! I hope everyone has a very safe and happy New Year!!

Last wednesday, my parents and I got in the car and started our trip to New York around 3am.  It took just about 3 hours to get there so we arrived by 6:00.  My pre-op appointment wasn't until 7 (arrival time 6:45) and the doors to the building didnt open until 9:00 (didnt really make any sense).  Anyway, I ended up behind a doctor who could get in so we managed to get into the building.  We went to Dunkin Donuts and got some breakfast and wasted time until I could check in.  By 7:00, I was heading in for pre-op and didnt really know what to expect because they said it could take 2 hours but last time it took less than an hour.  They did all my vitals, asked about my medical/surgical history and sent me to the lab for blood work.  It all took about a 1/2 hour and then I didn't have my appointment with Dr. Pilitsis (the surgeon) until 9:15. We wasted some more time then went to see her.  She explained what was involved in the surgery, about how lon...

So the time has come.  I never really thought it would but its starting to hit me that its real.  Tomorrow morning we are leaving at 3am to head to NY.  I have to be there are 6:45am for pre-op and Thursday for surgery.  I am so nervous.  The thing is though, I am more upset and nervous about leaving Hailey.  I know in my heart she will be absolutely fine, she will be in GREAT hands and she loves her grammy so much, I know she will have a wonderful time.  I am more worried about me missing her on Christmas morning and seeing that beautiful face as she walks out and sees all her presents.  Not that she knows its Christmas or has any idea what presents really are but I was looking forward to it. Anyway, I'm sure everything will be fine.  The plan is to do both sides and both battery packs all at the same time and as long as I am feeling good and I am ok to leave, I will be coming home on Christmas eve.  I'll meet Ryan at my parents so I c...

After a long battle with the insurance company, we have finally got things approved.  My dad fought for me to get put on a PPO plan instead of an HMO so I could be covered out of network.  Yesterday, he received a call telling him it all worked out and the surgery is all set.  I'm pretty anxious and didn't sleep much last night.  For some reason I never really thought it would happen.  Now its all real and as happy as I am, I am scared to death.  That feeling in my head after they drill that frame to me is sickening and thats all I can think of.  But... I know this is all going to work out and I cant wait to have my hands back.  I will hear more today, about a date and everything but I think its going to be either December 20th or 22nd.  I am hoping for the 20th!!  I'm not positive, but I think they will be doing both sides this time to help the dystonia on my right side too.  I'll update everyone again when I hear more!  Yay f...

So my insurance company denied my surgery... TWICE.  Its now up to me to fight.  They told my surgeon that it is no longer her business and I need to appeal it myself.  I sent letters and wrote urgent all over it.  The person I spoke to told me if I wrote urgent they would give me an answer in 48 hours.  I spoke to them on Friday and they said they'd have an answer this week.  I spoke to them again this morning and they said they will have an answer in 30 days.  I am trying so hard to be positive but things arent looking too promising.  My next step is to turn to my secondary insurance.  The doctor's office was supposed to contact them today, so we'll see.  If both of them deny it, I will have to find a new surgeon in MA which I really don't want to do.  I will have to start out from the beginning and have all the tests re-done and probably wont end up having it for months.  It scares me to know how long it could take because o...

So on Tuesday I got the e-mail that said my surgery will not be November 17th.  Since then I have been getting e-mails from the administrative assistant saying it still could be, and I started to have hope again.  The other date they gave me was December 8th.  This morning I got an e-mail from the doctor herself saying it will be December 22nd or the 30th.  I chose the 30th because of Christmas.  So it looks like I will be waiting another month and a half.  The stress of all of this is making everything worse.  I get neck spasms several times a day.  Every time this happens its very hard to breath, talk and eat.  Its so scary!!

I remember the frame being drilled into my head. I was awake and had the worst headache ever.  when it was over, i had no hair.  I cried because I thought people wouldn't like me.  I cried because of the scars, because of the reactions I would get from other people, and I cried happy tears because I was getting better.  It was quite a rough time in my life to go through brain surgery but I did it to get my hand back, I did it for my daughter and I did it for myself.  A month went by and my hand was working.  I cant even begin to explain how happy I was.  Until the infection.  May 21, 2011 was a very depressing day for me.  Once again, brain surgery only this time I would come out worse... with no hand again.  What a road ive been down since then.  Today was a bad day.  I have lost two fingers on my right hand and physical therapy wasnt much help.  My neck is twitching bad and sometimes i have a hard time breathing.  ...