Skip to main content

A brand new year

2018 was the worst year I’ve had when it comes to my dystonia but the best year I’ve had when it comes to happiness. I learned to never give up and to always fight for what you want and what you need. Although I’m still trying to get better at standing up for myself, I’ve improved greatly over the last year. My doctors in Boston stopped helping me which pushed me to find answers somewhere else. Eventually I ended up back with my surgeon in Albany, who has always come through and helped me overcome every struggle I’ve ever had with my dystonia. Once again, she’s helping me and next week I will have my DBS redone.
The stress is killing me trying to find help with the kids, but I’m so thankful for my family and friends for always helping me. In times like this, I want to give up and just cancel my surgery because finding help is very difficult, but I cannot be the mother I need to be in the condition I’m in and getting help will, in the long run, help my children as well.
One of the biggest reasons why I keep fighting is because Jim pushes me. He is the first man I’ve ever met that I feel comfortable being myself around and he stands by me through every hard day and the best days. He lets me cry on his shoulder and tells me it’s going to be ok but he also goofs around with me, makes silly voices and sings until I cheer up. He pushes me to do the right thing when I want to take the easy way out, he helps me overcome all of fears and is right there holding my deformed hand when I need to face something difficult. I can’t thank him enough for changing my life in so many ways, and in 2018 he asked me to spend the rest of my life with him. And of course I said yes.
In 2018, even though I had some tough times, my children had some amazing gains. Cody made it through his first full year without having pneumonia.  He started kindergarten and continues to amaze us every day with his strength and his eagerness to learn. He played tball for the first time and took ice skating lessons and loved both! And my sweet Hailey. She blows me away with her kind heart and her love for learning. She is doing so amazing in school the teacher actually said she wished she had a whole class of Hailey’s! She is reading chapter books and learning multiplication at home. She is a very smart girl and I know she will do great things in life! She started lacrosse and basketball this  year as well as playing softball and is becoming quite the little athlete. She loves being active and loves being outdoors!
In 2018, I started a new job at Maxim Healthcare working as an LNA for Cody. This is so perfect because I can be be with the kids but still be working. It was a perfect fit for my family and I really enjoy it. I hope to further my education and work outside the home once both kids are in full day school.
2018 was an amazing year but I know that 2019 will be even better. I am very nervous about next week but I am trying to stay positive and remind myself that better days are coming.
I hope everyone has a perfect 2019 and I’ll update again after my surgeries. ❤️

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 ...

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 ...

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...