Swimming Against The Current

  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...

  I’ve been getting Botox for about 12 years. It took about 10 years and several doctors before it worked. I’m convinced it’s the amount and place it’s given. Also, female doctors are just better and I finally found one! The problem I was facing is that it wears off after about two months but I could only get it every three months because of insurance reasons. So I would always go a month with my hand and foot curled in before I could get relief again. It’s so frustrating and that month is usually pretty hard on me.  Over the last couple years I have been trying to fix the damage that was done to my hand after it was clenched for so long. After my last surgery, my Botox wore off and my hand curled into a fist. I found out this week after having my fifth hand surgery that everything done last time had come undone. I’m unsure if this was due to the Botox wearing off or something the doctor did or didn’t do. I couldn’t be happier or more thankful for my neurologist, who has alway...

  The first thing I think of in the morning as I’m getting out of bed is if my dystonia is going to act up or not that day. Especially around the two month mark after I receive Botox. Every three months I get botox injections in my arm and leg and sometimes in my neck. I’ve been trying botox for 12 years with no luck but for some reason it works for me now. The problem is my insurance company will only cover it every 12 weeks and it usually stops working after 8, so I go about a month with symptoms before I can get it again.   My hand is starting to close again and giving me a lot of problems. I can’t use it for most things even when it’s open and it gets very frustrating. I drop something almost every day because of lack of strength and popping in my fingers. It’s deformed looking and hurts all day every day. I mostly have gotten used to just doing everything with my right hand but some days it just gets to me and I want it to be normal. I got a second opinion (more like 10th...

  Every day, you have a new opportunity to change. It’s a new day and it’s up to you to decide if you’re going to be happy or not, if you’re going to work hard and push for something or if you’re going to sit back and feel sorry for yourself. We all experience both of these things at one time or another.     Some days i wake up motivated and ready to take on anything that’s thrown at me. Some days I walk ten miles, I drink a lot of water, I’m happy and I don’t let little things bother me. Other days I wake up 18 times over night with a throbbing hand and then finally drag myself out of bed and think of every excuse not to work hard that day. Every little thing frustrates me, I drink coffee and monster energy drinks all day hoping at some point I snap out it, but most times I end up crying, dealing with the bad day and eventually going to bed hoping for the next day to be better. Dystonia is obviously a big part of my life and most of the time when I’m not feeling great it...

  What do you do when you have so many dreams, so much motivation for a healthy life, so many goals and every day there’s something stopping you from succeeding? I’m not too lazy, too tired, or unmotivated… my body won’t let me move. The last couple days have been excruciating.  As most of you know, my dystonia mainly affects my left side. My left hand and my left foot have always been the worst so when they act up, I’m not usually surprised or worried. This is different. My back is so bad, there is no position I’m comfortable in so I have to keep moving. When I sit, it feels like my back is crushing the top of my butt. My whole right leg throbs, the top of my foot aches and my right hand goes in and out of a fist. Mg right arm feels so weak it’s hard to lift anything. My abdominal muscles hurt and I can never tell if it’s anxiety, hunger, dystonia, or nausea because it sort of feels like all of that combined. For the most part, I can deal with the pain but I can’t deal with n...