Swimming Against The Current

2012 brought me so many great things.  The biggest thing was my hand.  At the beginning of 2012, I opened my hand and it has pretty much been open since.  Some days I have tightness but after stretching it and working with it, the tendons are no longer shortened and I can use my hand like I could 4 years ago.  Its a great relief, especially with the baby coming.  My mom reminded me the other day how difficult it was to give Hailey a bath with one hand and with that wrist brace on.  This time it will be so much easier.  I had a hard time but I was so used to not having my hand that it was just normal for me.  My foot is still giving me a lot of problems.  Most days its pretty painful, especially if Im walking a lot or standing for long periods.  I try not to talk about it a lot or complain because there is nothing that can be done.   I am due 5 weeks from tomorrow so hopefully once Cody is born, I can have my settings changed a...

Well my baby is growing quickly, which means so is my belly.  This pregnancy, surprisingly, is going by a lot faster then I had anticipated.  Its much different then my first pregnancy, which I heard is usually true with your second child. When I was pregnant with Hailey, I got pretty big but I dont remember to be so big, so fast!  I had morning sickness with Hailey for about 13 weeks.  I have not been sick at all this time.  Also, with Hailey I rested whenever I wanted.   This pregnancy, there is no such thing as rest!  Hailey has me up and moving at all times of the day (and night)!  Sometimes I really need a good nights sleep and she just doesnt like to go to bed!  I have realized so much from being a mother in just two short years.  There were so many things I wanted to do as a mother before I had Hailey, and its just so much easier said then done!  I wanted to have the "perfect" child, who was off her bottle at one ...

 My foot has now been curled in for nearly a month.  My physical therapist cant really get it straight.  My ob sends me to my neurologist, who sends me to PT, who sends me back to the neurologist.  Im not sure if no one knows what to do or if no one wants to deal with it because Im pregnant.  My neurologist has told me that the only real option is to admit me to the hospital for a few days and try changing the DBS settings.  I would have to be in the hospital so thet could monitor me and make sure the baby was okay.  The biggest risk is that the dystonia could move into my abdominal muscles.  The chances of this happening seems slim to me since Ive never really had symptoms there before but I dont know.  The risks are very unclear because there hasn't been enough people in this situation.  I would think if the symptoms moved into my abdomen, we could change the settings back to where they are now.  I am not sure what to do because m...

The question I most often ask myself is if I would rather have no use of my hand or my foot.  Now that my left foot has been curled in for four days, I have realized how much easier it is to have no hand.       Although when my hand was curled in, I was uncomfortable and aggrivated.  I hated not being able to do my hair, cut my food, do my daughters hair, get her dressed, change her diaper.  It was all a struggle but after three and a half years I learned to adapt and learned to do all of these things with one hand and one curled in hand.  That was my normal and when I got my hand back, it was great but it was also weird.  I basically had to re learn how to do everything.  My fingers still ache and its still hard to do things but im getting back into the swing of having two hands and it feels great.      I felt very positive about the DBS, it changed my life.  I am so grateful for my doctors and so ha...

Its been a while since I wrote here.  I have had a lot going on lately and miss Hailey is almost two so she requires a lot of attention!  She is just hilarious.  She has been talking more and more each day.  She sings all the time and dances.  Her favories song is pontoon by little big town and cries to listen to it in the car.  She absolutely loves dora and anything and everything that's dora related.  She also likes to get her way.  If she doesnt get her way, you can bet there will be a little tantrum going on.  She is at such a fun age and I love every minute of it.  Last Saturday, Ryan and I got married.  We had a small ceremony in his parents back yard mainly for insurance reasons and we will have our big wedding next June.  We wanted to have a nice wedding with all of our family and friends, a white dress, bridesmaids and groomsmen and all of that but we just couldnt get it all together for this year, it was just too muc...

For some reason I thought these nine months were going to be great.  I thought I was going to have little to no symptoms and everything would be perfect.  At the beginning of the pregnancy I felt pretty good and the only real problem I had was my back but I thought it was because of the pregnancy itself more then the dystonia.  Im starting to think otherwise. My back hurts so bad I can barely step on my left leg.  My left foot has been curling in and today my back is pulling in making it difficult to do anything.  I have two birthday's to shop for and grocery shopping to do and I just cant seem to get to the store because I am in so much pain.  I dont know if I should see my neurologist, my ob, walk or just lay on a heating pad.  I thought walking was good but Hailey doesnt sit in the stroller so walking and carrying a 22 month old probably isnt great for the pain.  So, any way if anyone out there has any suggestions for me that'd be great! ...

When it comes to my dystonia, my surgeries and being sick, I feel like I am a very strong person.  I have gone through 6 shoulder surgeries and basically 4 brain surgeries in my 25 years of life.  Yeah, it was painful, I had side effects, I had problems with the infection and it was a long road but I fought through it, being positive through the whole thing.  When it comes to life though, I am not a strong person at all.  I cant stand up for myself, I cant say no, and I feel guilty for months if I make someone upset.  I try so hard to make everyone happy and its just impossible.  I cant seem to do anything right, I feel useless and like I have no purpose in life.  I am trying very hard to change this about my self, to be strong and stand up for what I want, what I believe in and what I need but its just so hard.  As for my dystonia...  Things are going great.  When I was pregnant with Hailey something very weird happened, my dystonia w...

As many of you know, I have been planning a dystance4dystonia walk for a while now.  The day has come and gone quicker than I would have liked but it was a very fun day.  I am very proud of myself and very happy to announce that we raised right around $5,000 towards finding a cure for dystonia.  We had about 60 adult walkers and close to 20 children there.  There were 5 people (including myself) with dystonia and one mother of a girl with dystonia who was unable to attend.  It was a gorgeous day and everyone seemed to enjoy themselves.  I am hoping to raise atleast double this next year.  I just want to say thank you to the YMCA for letting me host the event there.  I have worked at the y for 12 years so everyone knows my story and they were very supportive of me.  I also want to thank my family who helped me through everything.  Not only did they help plan this walk but they were by my side every step in my life as I struggled to f...

A couple weeks ago, as I had mentioned before, my hand curled back in.  I tried to contact my doctor several times to help not only my hand but the very painful back spasms as well.  I never heard from him, which was unusual because he always emails me right back!  I finally called the office again and they told me he was on vacation for two weeks and another neurologist was seeing his patients.  It took a few days to finally talk to this doctor, who agreed to see me last Friday.  I was having a lot of facial twitching and my hand was still curled in.  She decided to change my settings on my DBS a little but didn't want to mess with it too much since she wasn't my regular doctor.  She changed the settings and almost immediately after, my whole body went into spasm.  My foot curled in, my neck pulled back, face still twitching, hand and wrist curled and back twisting.  I have experienced this only a few times before and never at the doctors bu...

I've come to the conclusion that it doesn't help your problem to be depressed about it.  It doesn't help to complain or feel sorry for yourself.  It doesnt even help to call the doctor.  What I have will never be fixed and I need to get over that fact and move on.  I feel like I have been trying very hard to be positive and not to let my feelings show.  No one knows how hard it is to live with dystonia unless you have it.  Does anyone know what its like to take care of a 19 month old with one hand?  Make supper while holding her?  Even going grocery shopping?  There are many things in life that most people take for granted.  I never thought about how much I use my hand, until I couldnt use it anymore.  When my hand curled in, my life changed.  I had to adapt to life without a left hand.  It was hard but I did it.  I went three years in a wrist brace and my fingers curled in, the whole time fearing I may eventually los...

So I just realized I never posted about my eyes.  Half of you probably think ive gone blind by now.  Anyway, I went to Mass Eye and Ear in Boston a couple weeks ago.  They did a very thorough eye exam as well as a field study.  The field study was very bad... this is what my other doctor had told me too.  This doctor, though, thinks it was bad beeause of my involuntary hand movement.  Maybe I pressed the buttons at the wrong time or something.  In other words, he does not think I am going blind.  I was so scared I was losing my eye sight!!  I do however have facial dystonia that the eye doctor in Boston noticed.  My right eye and right side of my mouth kind of twitch.  Some people may think Im winking at them haha.  This doctor even told me I dont need to wear my glasses all the time...just to drive and watch tv.  Thank goodness!  I am going back in about a week to have a manual field study to see if the results are a...

About a year ago I was preparing myself for a major surgery.  At the end of April, I went to UMASS in worcester to have my DBS.  I was more excited then scared.  Although I would be awake, it would be a long surgery and I would probably have a headache after, I was excited for the results.  The day my hand opened was one of the best days of my life (besides the birth of my baby girl!).  To get an infection and have the device removed was just devastating.  I couldnt believe it.  All my excitement was shot the day my hand curled back in.  I was so upset I didnt want to even speak to anyone.  All I wanted to do was cry. I went back to Florida to be with Ryan until he graduated in August.  After the big move back to MA in September, I began to prepare myself for my second DBS surgery.  This time I was more scared than excited.  I was scared about the surgery because the first one hurt so bad when they put the screws in my head....

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...

I have organized a dystance4dystonia walk.  It will be held at the Montachusett Regional YMCA in Fitchburg, MA on May 19, 2012.  It is at 9 am and is $25 to register.  The $25 will go to the Dystonia Research foundation to help find a cure.  So, please help me raise money for a great cause. Come Walk for a Cure!  Here is the registration page: http://www.dmrfevents.org/event.php?419817

I've been seeing my neurologist one to two times a week for a few weeks now.  Next Thursday will be 6 weeks since the surgery, which means I don't have to be so careful lifting and I can bring Hailey back to swim lessons.  I'm looking forward to that.  I am also going to be starting a mommy and me class at the Y for anyone interested.  It's going to be on Thursday's from 9-10 and free to family members.  There will be stories, music, learning and fun!  Just a little playgroup for young kids.  My neurologist has been changing the settings a little bit each time and I am at 4.7V for the right side and 6.5V for the left.  Both hands are opening very well and he is pretty happy with it.  He said he still has some playing to do because its not "perfect" but he did have me showing everyone in the office how well I could open my hands!  I am going to physical therapy now to stretch my fingers and hopefully that will prevent me from having surg...

Last week, Dr, Novak turned my DBS on.  I didn't have any improvement but I also didn't have any side effects.  He moves slow because they cant turn it too high in one visit.  I went back on Monday and he turned up the right side (left side of my body) to 4.5V and the left side to 4.2V.  As I said before, my left hand opened last time when the voltage was at 4.5.  This time, my right hand was much looser and I could move it a little but my left hand was still pretty tight.  I'm not that familiar with the settings of the DBS, so Im not sure what he had that at. I went back and saw him again yesterday.  He turned both sides up then had me wait a half hour to make sure I didnt have any side effects.  He then turned it up again, had me wait, then turned it up again.  At the end of last programming for the day, both hands were moving pretty good.  I can now just about open my right hand almost all the way.  My left hand is much looser a...

On Wednesday I went to see Dr. Novak to get "turned on" and programmed for the first time.  He turned on both sides and I didn't feel anything.  Last time the voltage was at 4.5 before my hand opened but because they have to take it slow, he only put it at 2 for now.  I have to go back Monday for more.  Yesterday, my foot started acting up on me pretty bad.  It went into spasm more times then I could count and my leg has been so sore.  It has still been bothering me today.  Dr. Novak told me to turn off the stimulator for a day to see if its from the programming.  I turned it off this morning and there has been no change so I dont think it is from that.  I also have a weird feeling in my left thumb.  Its burning and feels very weak.  I hope this doesnt mean I am losing that finger.  Anyway, atleast the DBS is in so now we just have to play with the settings.  Ill update everyone again next week! Have a great weekend!!