Swimming Against The Current

  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 always done ev

  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) with a

  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’s because of

  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 not being

  I didn’t think I could do it. I almost backed out of doing my walking fundraiser because I had absolutely no faith in myself to succeed. Jim pushed me because he knew it meant a lot to me. I decided to do it, even if no one donated and I just started walking a couple miles a day I could just do it for myself, to help me stay motivated to stay active. I made the Facebook page and started inviting people to watch my progress and within 2 weeks had reached my goal of $1000 raised. I’ve walked 68 miles in two weeks and this morning I actually jogged 3 miles. Who am I? I barely recognize myself, I am not a runner and I have never been a runner.    I am proud of what I’ve accomplished but I couldn’t have done any of it without all of you, and especially without my husband.  The amount of people who have shared my story, commented and donated has truly been amazing. I am doing this because I am tired of living with dystonia and just want a cure. I am also doing this to show anyone and every

  It took me 22 years to get diagnosed with dystonia. 22 years of unexplained pain, several unnecessary surgeries and a whole lot of unknowns. The first time I heard the word “dystonia” I had no idea what it meant and spent days researching it to understand it better.    I wished I had known more about it at the time but it took years to fully understand what was happening to my body. It seemed like it progressed fairly quickly. It started in my shoulders I guess but we didn’t know what it was until my hand curled in. It then moved to my foot and neck and then to my right side.    After going through DBS, medications and Botox injections I started to improve. As I got better, all I wanted to do was help other people understand it.  Since 2012, I have had 4 dystonia walks to spread awareness and raise money for the DMRF. I have had great support and have met many people. Last year, we had to cancel the walk because of the pandemic and it looks like we will have to cancel again this year

  My dystonia was getting bad again, I was overweight and unhappy with how I looked. I spent most days feeling sorry for myself and just thinking of every excuse I could to not change. I didn’t have the time to workout or the money to buy healthier foods. I didn’t have the energy to cook good meals and I was in too much pain to get up and do something. I never took the time to think about my own body or my own health and I never thought to change my whole lifestyle. On New Year’s Eve, I saw a picture of myself that my mom took and was so unhappy with the way I looked that it brought me to tears. That week I started working out every day with videos on YouTube. The week after I joined weight watchers. The week after that we bought a treadmill and I started walking every day. I changed the way I drink my coffee, I stopped drinking soda, and I stopped feeling sorry for myself. I got up and moved and this morning I was down 12lbs since January 6th. I am so happy to say I’m losing weight bu