Skip to main content

Never give up

Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.
I’m truly trying. It’s been about a year since my first hand surgery and I had hope I’d have that one surgery and my hand would be normal. It wasn’t. 7 months later I had another one to tweak what was done and I thought for sure it would be 100% after that one. It wasn’t. 3 months later I had my third surgery and said to myself, “this is the last one, it’s going to work!” It didn’t. Over the last 4 months, my hand has progressively gotten worse. I now have no feeling in my thumb or index finger, all fingers are hyperextending, severe pain in my forearm and a shock like feeling in the top of my hand. There is nothing I want more than to just give up right now. But every time I think that’s what i want to do, I realize that’s not who I am and there is no way I will just be ok with everyone telling me there’s nothing that can be done. I don’t know if it’s my DBS that needs to be adjusted, more hand surgery, physical therapy, Botox or medications but I WILL get my hand back.
I had a telehealth visit with a new doctor the other day and he mentioned a few options for me. We are going to start with an X-ray to see if there’s any damage and what’s going on with my nerves. We will move on from there and discuss my options. He is afraid that my dystonia will fight against any surgery I have so he is not sure it’s worth it, but we will discuss it further when I see him in person. 
I’m so sick of dealing with it and seeing doctors during the coronavirus with my kids home is extremely hard. I can’t always get the help I need right away so I’m trying to work around it. This is a difficult time for everyone and I feel very lonely and isolated. My kids and I have been trying to find new things to do during the days at home so if anyone has any fun activities you want to share, I would love to hear them. I would also love to see any new delicious recipes as I’d like to start cooking new foods. I am trying to be more active and ignore my dystonia for the most part but it seems every time I move I pull a muscle. I’m desperately trying to get in better shape so I can do things more comfortably. 

When you feel like giving up, remember why you held on for so long in the first place and always remember how far you’ve already come. 

Comments

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 ...

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...

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...