Swimming Against The Current

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 breathe so I have nothing left in me to d

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 and hugged each of them.  I wa

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 being changed a little.  It should be do