Swimming Against The Current

Leading up to my surgery, I had some of the worst dreams that I didn’t want to share until it was over. Every day, I thought something was going to prevent me from having this surgery done. I had this sick feeling deep in my stomach that something would go wrong. And when nothing happened in the days leading me to surgery, I thought for sure something was going to happen in the OR. Last Sunday night, at the hotel in Albany, I don’t think I slept more than 20 minutes. I got up before my alarm, took a hot bath and prepared myself for this. I felt this feeling of excitement that the day was finally here but also a feeling of panic.  I met with my surgeon and two other surgeons helping her, a few nurses, and 2 or 3 anesthesiologists. Each one had different information that I tried to absorb but thinking back now I don’t think I understood a single thing any of them said. They finally were ready to bring me into the OR and I couldn’t have anything to relax me because it may interfe...

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 big...

It was a week day evening and we decided to order Chinese food.  It was a great idea in my head until we got it delivered and it came in those flimsy white to go boxes.  When Cody was finished with his three bites, I grabbed the box to put it in the fridge and dropped the entire thing all over the kitchen floor. It was a rainy Saturday afternoon and we decided to take a ride to look at some cars.  I was walking back through the parking lot and tripped and fell into a massive puddle.  The kids stood there asking me if I was ok, and I couldn't get up because I couldn't use my hands to push myself off the ground. One day, we were driving and I went to pick up my coffee to take a sip and I dropped it and spilled it all over the car. Most of you probably just think i'm clumsy and don't understand why these things would bother me so much.  The truth is, it's annoying, frustrating, embarrasing, and painful.  These are just a few examples of things ...

Look for something positive in each day, even if some days you have to look a little harder. Recently, my days have been hard and painful and its hard to stay positive but I have been trying very hard to find the good in every situation, even when it feels impossible.  Back in October, when my dystonia symptoms started to flare up, I got discouraged but I had hope that things would get better.  When the tingling in my head started and I had to shut my DBS off, I got scared and lost most of my positive attitude.  When I had surgery in March, the tingling went away and once again I had hope.  Unfortunately, that surgery didn't work and I was right back where I started, but without that feeling in my head. I tried to stay positive over the months, I called my doctor daily and I researched answers and treatments.  Slowly I began to get discouraged again.  I got tired of being in pain and tired of spending every day all day on the phone and realized I w...

About 10 months ago, I began re-living the nightmare I had back in 2008.  My hands and feet began curling in and over these 10 months my symptoms have just continued to get worse and worse.  I have been going o Brigham and Women's Hospital to have my DBS settings changed, I received botox and tried different medications.  Nothing was working and the frustration was taking over my life.  I spent hours and hours day after day searching for doctors, and treatments and answers.  Two weeks ago I met with the neurosurgeon and my neurologist, who told me basically there was nothing else they could do.  They said they could do more botox, change my settings or make a lesion in my thalamus.  I wasn't pleased with this appointment but tried to stay positive because he told me he would call me within a day or two with a date for botox.  I never heard from him. I pushed and pushed for a second opinion.  I am done waiting around and having this pain ever...

The last few weeks have been some of the hardest weeks I've ever experienced.  My dystonia is getting worse and the pain is something I can't even begin to explain in words.  Imagine having a Charlie horse, now multiply that pain by 10 and apply it to your arms, legs, back and neck.  Doing every day tasks like cooking, cleaning and doing my hair have become nearly impossible.  I am getting extremely discouraged and don't really know what my next steps are.  I have called nearly every neurologist that's within driving distance but getting someone to listen and help me is extremely difficult.  Now, I am not writing this for sympathy or to complain about my pain but I am writing this is desperate need of someone to help.  If anyone knows of a great movement specialist neurologist, please let me know. I have an appointment on July 6th with my neurologist and neurosurgeon but I am petrified.  They have tried multiple things with no success, and are n...

Yesterday was one of the scariest days I’ve ever had. I drove myself to Boston to have an adjustment on my DBS because my symptoms haven’t been improving. The doctor saw me right away and decided to try a totally different setting. He changed the frequency from 10 to 130 and the voltage to 3.0 and 3.5. When he turned the voltage any higher I started to have drooping in my face and couldn’t talk. I thought I was ok so I went home and was told to follow up in 2-3 weeks unless I noticed side effects. By the time I got home my whole right side was weak, I was very slow in doing everything, was dragging my right leg and slurring my speech. My right side was twitching and spasming so bad I couldn’t sleep and ended up shutting the DBS off in the middle of the night.  I called my neurologist and will be going back to Boston tomorrow to try this again. I’m getting extremely frustrated and losing my patience but trying my best to stay positive.  Thank you for all the prayers....