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

Popular posts from this blog

When Pineapple socks aren’t enough

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cyc...

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 ...

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...