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

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...
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

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 ...
8 comments
Read more