Skip to main content

Staying Positive

Often times we take for granted the amazing things in life.  The feeling of being in love, the confidence when you get your license, graduating from high school or college and the magical feeling of Christmas morning.  More times than not, we rush through life just to take up time while always "waiting" for the next big thing. It's been a long time since I have just enjoyed a typical day.  I was always stressed out and couldn't wait until bed time just to get to the next day to do the same thing all over again.  It was a habit, it was a routine, it was life...but it wasn't fun. 

I was recently introduced to happiness again.  I have learned to enjoy the sunrise every morning, take my time and enjoy every day with my children.  I love watching the snow fall and how beautiful the trees look the morning after a storm.

The last few months have been excruciating but filled with happiness at the same time.  I decided a while ago that I was going to go to school to be an LNA so I could get paid to stay home with Cody and take care of him.  I never had the money to actually do it so it took me a long time but I finally just sucked it up and signed up in October.  It was a 7 week class and I had the pleasure of working with a group of girls who were amazing.  We supported each other through it all and last week, I passed my state exam.  Tomorrow I have an interview to be hired to be Cody's LNA.  I am so excited to start this new adventure.

My dystonia has been really acting up the last few months and its been hard to stay positive but with my family, friends and boyfriend Jim by my side I have managed to get through some pretty tough days.  My body seems to want to do some crazy movements and cause a lot of pain.  I have seen my doctors several times and no one really knows what is going on.  A couple weeks ago I finally met with the neurosurgeon and the neurologist who is the head of the movement clinic at Brigham and Women's.  They are both excellent doctors and really willing to help me.  They scheduled me for an MRI to check the placement of the leads in my head and also to get botox in my arm and leg.  I went in on Friday to have this done and unfortunately I wasn't able to have the MRI because there was a short circuit and it was unsafe.  They did some x-rays instead and continued with the botox in my arm and leg.   The plan now is to wait a few weeks and see if I see any improvement.  From here, they will adjust my settings on my DBS and wait and see.  In a couple months if there is no improvement, we will sit down and have the discussion about possibly adding another stimulator. I am hoping it doesn't come to that, but I am staying positive and I know this will work out for me in the long run.

Thank you for the continued support, and I hope everyone has a wonderful holiday season!

Comments

Post a Comment

Popular posts from this blog

Dystonia awareness

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
Post a Comment
Read more

update on Dystonia and Family

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 ...
13 comments
Read more

Why be normal?

For the last 17 years my hand has slowly been getting destroyed. Its been closed, open, dislocated fingers, and eventually everything about it was deformed. My first hand treatment was casting my fingers open but with dystonia this usually doesnt work. It was one of the worst pains I ever experienced and I had to go back and have the cast cut off that night. I had my first hand surgery in 2019 to "fix" some of the damage that was done from my dystonia. Little did I know that would turn into many more surgeries trying to relieve my discomfort and my anxiety of having a deformed hand. I wanted it to look normal so bad. I was so embarrased by how my fingers looked that I always had my hand in a sweatshirt pocket so I could hide it from the world. I never mind sharing my story to spread awareness but how embarrasing is it to drop groceries everytime you try to shop, or struggle to pick your toddler up. Over the last couple years I started seeing a new hand doctor that my mother...
Post a Comment
Read more