Swimming Against The Current

As my adventures in Fort Myers come to a close I realize how close we are to Hailey's first birthday.  It seems like just yesterday I was anxiously awaiting her arrival, being on bedrest for 2 weeks because of early labor and then walking and walking trying to get her to come when I was far enough along and she just didn't want to come.  I guess she was mad they wouldn't let her come the first time.  I can remember the feeling of joy overcome my entire body when I looked at her for the first time.  She was absolutely beautiful (and still is!)  Her hair was the biggest surprise to me but I loved every piece of it.  All 8lbs 4oz of her was perfect.  Each month passes so quickly and as I watch her grow I can't believe how much she changes.  First she smiled at me, then learned to say "dada" and then "momma" and now she even says dog!  She then started scooting, crawling, then pulling herself up and now walks pushing her "push" toy!  She st...

When Ryan first asked me to move to Florida, I was undecided.  I was just finished school and was hoping to find a job.  At the same time I didn't want Ryan to move so far away from me.  But all my doctors and family was in MA... there were so many decisions I had to make and I am so glad i made the one I did.  These last two years have been hard but amazing and if I didn't come here I wouldn't be where I am and probably wouldnt have little miss Hailey.  It has been one hell of a journey and I can't wait to continue our life together as a family, wherever that may be.  I am so proud of Ryan for all that he's done and I appreciate all his support through my surgery and everything else.  He has one more week of clinicals and then he is done school!  Next week we will finish packing, my parents come next Thursday (the 25th)  and his parents and sisters come next Saturday (the 27th)!  And graduation is Sunday the 28th! After his graduation w...

I'm sorry to all of you who think I am complaining.  I am not doing this to complain, I am doing this simply to help others.  I feel that if people read my story, they will know what dystonia is like and people with dystonia who are thinking about DBS will know more about it.  As bad as it was to get the infection and have the DBS taken out, it was a great experience because it worked and now I can have it done again but this time know what to expect.  As far as my shoulder goes... I am desperately seeking some help.  I would love it if I knew how to pop my shoulder back into place.  Even when I have a shoulder subluxation not a dislocation it is very painful and wish I could just get some relief.  So if anyone has any suggestions let me know!! :)

A couple days ago I was going to the store with Hailey.  Sometimes this is a lot of work by myself but for the most part I do okay.  Well we got to the store and I went to take the stroller out of my trunk to put Hailey in.  My left shoulder popped so loud and my arm just dropped.  Immediately, my fingers went numb.  Not only was this very painful but also very frustrating.  Now, I was kind of stuck and had to either lift the stroller again to put it back or lift Hailey (or eventually do both).  I was scared but I have learned over the years to do many things with one arm.  I know this is very annoying to everyone around me because it happens so often but it is very annoying to me as well!  I have been icing it off and on all day every day since it happened.  This morning when I woke up, after sleeping with the ice pack on I felt okay, and decided to try to pack some stuff since we will be moving soon.  Not such a good idea.  I...

It's officially August, which means Ryan is graduating soon and we are moving back to MA shortly after that! I have been very busy lately packing, cleaning and organizing.  Last week I had a CT scan of my head and the infection is all cleared up.  I also saw Dr. Novak and he gave me some muscle relaxers for my leg cramps and some botox in my arm to try to keep it lose so the surgery will work right away when I have it again (which will probably be the beginning of October).  I think he may have given me too much botox because my arm is so weak I cant do anything with it!!  My shoulder has been so sore too!  I have come to the conclusion that DBS helped my shoulder pain (woohoo) and botox makes it worse.  It feels like all the muscles around my shoulder are usually in spasm and holding it in place but with botox its so lose that it just hangs.  Its just so painful and I dont know if its worse to have it too lose or too tight!! Hailey is doin...

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...

The last few days have been the worst days I've had in a long time.  I was very hopeful and positive that I was getting better until this whole infection.  I had an MRI on Monday and they couldn't finish it because my head felt weird when they turned in on so I ended up having another CT scan.  The CT scan showed that the infection had spread and the whole device had to come out.  Tuesday morning, they took it out.  I am devastated.  My hand is already curled in and my feet have already been acting up on me.  I just don't know what to do, I am back at square one and just want to go back to FL with Ryan.  I was so looking forward to going back there and being better.  When the infection is gone I am going back there and when we move back I will have the DBS put back in.  There is only one problem.  My surgeon is moving and will be working in NY so I will have to go there to have it put back in and I'm not sure if my insurance will wo...