Skip to main content

Dystonia Awareness

September is Dystonia Awareness Month so I wanted to share a little about how my dystonia has recently been affecting me. 

It's like a flash back to when I was pregnant with Cody.  My left foot got stuck and I was trapped the whole 9 months because I couldn't have my DBS settings changed.  My foot is exactly the same now.  I am having a very hard time walking and my whole left leg/foot is throbbing.  My left hand is also stuck and I am unable to open it and use it at all. 

This hasn't happened in a long time.  Sometimes, I'll have a "spasm" here and there that usually gets better with time and rest.  This has been on going.  Last week it was my neck.  I checked my batteries for my DBS and they seem to be fine so I feel like it must be stress related.  I'm working on trying to relax and rest and get in to see my neurologist as soon as possible. 

Thank goodness I have my beautiful children to give me strength to get through times like these.  Friday will be my last day at work and in a couple weeks Cody will be going in for yet another surgery.  Once Cody is healed and feeling better, my plan is to take an LNA course so I can get paid to be home with him.  I am praying this all works out as planned so I can get on my feet and start pushing for all my dreams.

Although I'm stressed, life has been amazing.  I haven't been this happy in a very long time.  I find myself laughing so much more, and enjoying the little things in life.  I am so thankful for all my family and friends who have stood by me during the roughest parts of my life and helped pick me up and get me back to where I belong.  I honestly feel like I'm starting to be the person I used to be again, and I am so proud of that.  It's time to start standing up and being strong and living this beautiful life the way I should be!

Comments

Post a Comment

Popular posts from this blog

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

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...
Post a Comment
Read more

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