Swimming Against The Current

The Dystance4Dystonia walk is in about a month and 1/2 and I want to thank everyone who has donated or registered to walk.  I am now up to over $1200!  The goal is 7500, so I still have a long way to go but this is definately a good start.  Just a few reminders to everyone who wants to walk or donate: Only $25 for an individual to register to walk $60 for a family to walk Everyone that registers gets a tshirt If you are pledging, you need to raise atleast $100 and I need the forms and money in atleast a few weeks ahead of time I strongly suggest everyone sign up online and not wait until that day, I need an estimated head count 3 weeks before the event and if you sign up online, you get a tshirt We have to order the tshirts and we will probably have a few extra but if you wait until the day of the event to sign up, we may not have enough or we may not have your size We will have 50 children's tshirts to hand out the walk is a 5k, so it is a little over 3 mil...

Last week I had a follow up with the eye doctor.  In September she had given me glasses because I was losing my peripheral vision.  She thought it was because of the DBS and it was going to get better and eventually I wouldnt need the glasses.  She wanted to check up six months later though, to make sure. This time, my field study showed my eyes were getting much worse.  Now I have to go see a neurological eye doctor in Boston to make sure theres nothing serious or to find out if there is anything else that can be done to help.  She told my dad and I that I might go blind eventually.  I was devastated.  This cant be happening.  I dont believe it, I cant.  Im not really that religious but this time I think I need to pray and ask god to help me get through this.  I will NOT go blind.  I hope she made a mistake and I will forever see my beautiful daughter and future kids and grandchildren and neices and nephews and Ryan and mom and da...

     In June 2009, my dystonia was really bad.  That is when my wrist curled in and I lost complete use of my whole left hand.  I started wearing a wrist brace and little did I know I would wear it for 3 1/2 years straight.  Anyway, I applied for social security disability beacause it was impossible to work.  I had a job for two weeks in Florida around that time and was fired because I "didnt fit in" even though I know it was because of my dystonia.       I was denied social security twice and had to get a lawyer and go to court.  It took until now for that to all happen.  Last friday, I finally had my court date.  I met with the lawyer the night before and he went over what was going to happen.  He told me the questions he was going to ask and said to just "tell my story."  I was looking forward to it because I never could tell my story, it was just all on paper.       F...

There is something about the sun shining and music playing that always seems to make people in a good mood.  There is nothing more enjoyable then sitting outside in March in a tshirt watching my girl play in the grass.  Usually we have piles of dirt covered snow this time of year.  March is usually my least favorite month because I want it to be spring so badly but it seems so far away.  This year it came early, I think because I really needed it!  Life is so much better in flip flops! I believe everyone in life has a purpose.  Some people were born to help sick people, some were born to fight for our freedom.  Some people were born to make people laugh, others were born to sing.  Some people were born to work and some people were born to have fun.  I have yet to find my purpose in life.  I want to do something big, I want to be strong and help others.  I want to make someone proud, be someones hero.  I want to write a book, ...

Last week I had a pulmanary function test done to see whats going on with my breathing.  The tech scared the crap out of me and told me it was abnormal and "something funky was going on."  She told me to call the next day to get the results.  I called on Friday and they didn't have the results yet.  Yesterday my breathing was really bad.  I was in so much pain in my chest and back and felt like my throat was closing up so I tried relaxing, shutting off my DBS and finally emailed my neurologist to see if he had any tips or if he had heard about the breathing test.  He said I had no major breathing abnormality and to go to the ER to test my oxygen level.  I didnt end up going to the ER but I was so scared because when this happens it feels like Im dying.  I was relieved I had no breathing abnormality but kind of irritated they scared me like that.  Today, my breathing is bad again.  I have to use every bit of energy I have trying to breath...

Last week I was at the y, sitting in the babysitting room watching my beautiful girl play and my mom walks in crying.  She came to tell me that my great aunt Theresa had passed away.  We have known for a long time that she was sick but for some reason it seemed like she was going to live forever.  Alot of people probably think, "great aunt" is nothing really but Theresa was such a wonderful woman.  She was strong and beautiful and loved everyone so much.  I haven't seen her in a long time and I dont think she ever got to meet Hailey but I felt so close to her and I am devastated that I didnt go see her.  Hailey would have loved her.  When I was little, we used to go to a cookout each year with all of my dads cousins and aunts and uncles and everyones kids and Theresa used to tell me she was going to take me home.  I can still hear her voice saying that.  So, Sunday we went to Theresa's wake.  I walked up to her children standing in line...

Not being able to catch your breath is the worst feeling in the world.  Out of all of my dystonia symptoms, this is the scariest.  Yes, I hated not having hands, and yes I hate not being able to walk sometimes or not be able to turn my head but to feel like you are suffocating all the time is terrible.  I am afraid to go to bed at night because I feel like Im going to just stop breathing.  I saw my neurologist last Thursday for programming and he changed the settings a little.  He said this is normal, when they fix one thing (my hands) the brain is still fighting and it could move to a different muscle group.  He didn't want to change the settings too much because he didn't want my hands to curl back in.  I can understand this but the breathing thing is starting to worry me. He said he would continue with programming this week.  We'll see how it goes.  The dystance4dystonia walk is still on for May 19th and the registration page is bei...