Swimming Against The Current

  Dystonia awareness month My journey likely started long before 1998 but that year was when I dislocated my shoulder for the first time. After many doctors, misdiagnoses and people telling me I was making it up I was sent to Children’s hospital in Boston and in 2000 had my first shoulder surgery for “instability”. By 2008 I had had 6 shoulder surgeries. That year, after the last surgery I lost use of my left hand. Many more doctors and tests later I was finally diagnosed with dystonia in 2009. After many trials of Botox, medications, hand splints and therapy we started to discuss the possibility of deep brain stimulation. By this point it had traveled to my feet and my neck and I would sometimes need my mom to massage a cramp out of my neck in a parking lot so that I could drive home.  In 2011, I had my first DBS placed. My hand opened for the first time in 3.5 years in the OR and we all had hope that it was successful.    It worked great at first but 2 months after...

  When I had my DBS placed the first time, I was scared. I didn’t know what to expect, I was just starting out my life as a mother and I was scared. I had never shaved my head, I had never been awake during a surgery and I really didn’t know if it was going to help me or not. After the surgery, I was excited to hear that my hand opened in the OR. I had hopes that my life was getting better! When my head got infected I was even more scared. Going home with IV antibiotics for 6 weeks was the scariest thing i had ever dealt with. The headaches were nauseating and it was truly a scary time. Then they had to take out it out which was even more scary because my dystonia was going to get bad again. When I found out my insurance company wouldn’t cover it to be done again you can imagine how scared I was. But we fought it, I had it done again and it worked! 7 years later, I was more scared than ever! I had recently got divorced and was now dating an amazing guy. I was so scared for him to s...

  Some people say just wake up in the morning and decide to have a good day. Sometimes this is true. Instead of moping and complaining about little things, you can choose to look at life differently, accept the imperfections and just “be happy”. I do think there are many things, though, that make it hard to force yourself to always be in a good mood.     Getting rest… sometimes it’s hard because life is busy but sleeping a proper amount is so important for your health and happiness. Our diets also impact how we feel. Healthy eating will give you more energy, less bloating and overall just make you feel better. But, the number one thing that affects my mood is pain. Every single day I try to push through it, I try to “live” like I would if the pain wasn’t there. When I do this, I end up taking 2-3 days off from doing anything because that one day I felt motivated, I did too much. The frustration I have is so intense it sometimes makes me angry and in a bad mood. I want to ...

  2021 came to an end very quickly filled with a lot of pressure and stress. I quietly prayed that 2022 would start off better and be “my year” filled with good luck, good health and less stress. I know that on January first people have this thinking that life is just magically going to change because it’s a new year. I know it’s an imaginary line that doesn’t really have anything different about it as far as life changes as any other month. But I still always think it.  January started with my dystonia pretty bad, my finger infected and both my doctors on vacation. Then my cat started having a seizure.  A few days into the month, my daughter tested positive for Covid. Thankfully her symptoms were mild but her and her brother were told to quarantine for 10 days. So, we were stuck in the house playing cards, building legos, eating snacks and working on homework. It got old fast. It seemed like nothing was going right.  Then my husband started getting sick. Every day w...