"Cannonball"~Lea Michele

The end of 2013 ends and a new year begins.  One last post of 2013.  
I chose this song because I heard her sing it for the first time on Ellen and thought that this is how I have felt all year.  It is kinda my anthem for the year.  It is how I have fought and pushed my way through this year to accomplish so much.
I started this year out still feeling down about my MdDS, but I pushed myself as much as I could.  I started off the year on such a low note after last year's holidays.  I was worried that my goals I set for myself were too high.  But if anything I have learned in this last year, I'm stronger than I ever thought I was able to be. 
I accomplished so much, and I'm so proud of myself for doing so.  I was able to travel more.  I was able to see the last of my dearest friends commit her love for her husband in March.  I was able to get to my grandparents' house in South Carolina and got to also see my dad while I was there.  I made it to Nags Head this year and even ended up walking into the ocean for a little bit.  I started driving again after not being able to drive for a year.  I started working, part-time, but I'm working.  I'm working more with computers and pacing myself with projects at work and home.  I went to a few concerts, a broadway show of "American Idiot."  I also tried to ride a roller coaster (not doing that for awhile) and also went to a water park for the girl scouts. 
I took over my girl scout troop this year as leader.  I now have 16 girls under my guidance with the help of a wonderful co-leader.  In doing this, I have been able to plan small trips with them including going to a pumpkin patch, fire station and camping (my first time ever).  
I still have had some rough days, but they come farther apart than what they used to do.  Like my husband says, this time last year I was begging for good days, now I have way more good days than bad.  I've worked on how I cope with the stress of it all.  I've learned that I'm not superwoman and I can only work on one day at a time.  
So here comes 2014.  My number one goal for this year is to keep moving forward.  Keep trying new ways to overcome my obstacles that I have and keep going.  Josh and I are coming up on our 10 year anniversary.  It will be 10 years since I joined my sorority.  It will be 9 years since I had my son, 6 since I had my daughter.  6 years since we bought our home.  
I say good bye to one more year and hello to a new one.
"I've got this new beginning and I'll fly, I'll fly, I'll fly, like a cannonball"
Happy New Year to all!~Sara

  

"Mango Tree"~Angus & Julia Stone

I apologize ahead of time if this post is so scattered, but I decided to write on a day where I feel my worst as far as the way my brain is working.  
First off, I've come to the conclusion that I have a love/hate relationship with Virginia weather.  Sunny days are good, unless there has been a bad pressure system running through.  Rain hurts.  Cold drives me bonkers.  I've always been known as a summer baby.  My momma made me for summer weather.  I used to love rain storms that come through, but even the smallest sprinkle of rain is killing me.  Since I was diagnosed, I've had a pressure sensation in my ears, but here lately I'm experiencing sharp pain, especially with the cold.  It feels like someone is jabbing me with an ice pick in my ears.  Not only do these systems cause the pain, but the pain makes the rocking worse.  I'm so distracted with the cold and pain that I can't concentrate on walking straight or being able to focus on easy tasks.  It is driving me nuts!  I have learned to deal with the pressure but I can't handle the pain.  Its almost debilitating, and I can't stand that either.  
Today is my sororities Centennial Founder's Day celebration.  I joined Phi Sigma Sigma almost 10 years ago.  The best decision I ever made.  Through my big sister and a mutual friend I met the love of my life.  My sisters are still a big part of my life today.  I'm so happy that I have them there in my life.  I proud of our 10 founding sisters who basically said that it doesn't matter your economic, social, or religious background, you can join our sorority.   We instill this concept today with acceptance and love for those who want to join.  Diokete Hupsula!  
Thanksgiving is coming up in two days.  There is so much that I'm thankful for in my life.  This last year I've realized that I have so much that I am appreciative of.  My husband, kids, mom, sister & brother, extended family and friends.  A home, food on my table, my kids have what they need, my marriage has what it needs.  So much has happened over the last few years within my family that I am so grateful to have each person with me.  
I've pushed harder this last week to do more day to day.  I'm trying to focus even more at work.  I'm trying to be more involved with my kids.  I try to spend more attention to my husband.  I'm driving more.  I have my good days and bad, but I still push.  I may come home and collapse from exhaustion, but I'm accomplishing more for myself.  I'm slowly getting my independence back.  
I've found new music to listen to which is awesome!  I love finding new artists that I hadn't heard of, but even popular artists with new songs.  It was actually tough for me to find a song to title my blog with today.  I looked back at my blog and found that its been awhile since I've done the playlist of what I've found recently.  Its pretty cool when certain songs help me to relax when my body won't, or finding a song that has a good beat that helps me walk to it.  I've always been one to search and hunt for new music.  I listen to anything at least once, but it all depends on the mood.  So lately its been a jump between dance mixes & pop to more mellow songs like the one above.  I found this artist through the soundtrack for "Breaking Dawn."  As much as I liked the song "Love Will Find You" I love their other songs that they have too.
Random thought:  Sneezing with MdDS is the pits!  Let me just tell you!  Next time you have to sneeze try rocking back and forth while you do it without falling over or slamming your head into a wall!  Jeez.  Again the weather changing back in forth has had me sneezing more often and it sucks!
Ok, random thought over.
I'm going to try to make a valiant effort to update my blog more often.  I know I was slacking off for a while there.  It was more so because of starting the new job, getting Girl Scouts started, kids in school, adjusting to my new day-to-day schedule with all of that plus balancing family time and fighting my bad days.  My bad days tend to put me in bed for days at a time.  BUT! Looking back at this time last year is a big difference.  This time last year I was having more bad than good days.  I was stressing over holidays because I wasn't sure how I would handle my entire family in a small space, but this year I'm not so stressed.  I know what I have to do.  I need to take breaks, sit when I need to, stand when I need to, and try not to stress out over the little things.  If it doesn't get done, oh well. 
So I think that's the end of my purging of the brain for today.  Until next time. 

"Behind The Scenes"~Francesca Battistelli

If you know me, you know I'm a positive person.  I'm happy the majority of the time.  I hate to cry.  I hate to get angry.  Life is too short to be miserable.  I love to goof off, laugh, dance like no one is watching.  I like to make people laugh.  I take life as it comes and keep going.  I don't mind embarrassing myself.  My outer shell is someone completely different than what is fully inside.  I don't show my struggles very often.  I'm an emotional person but only to those really close to me.  I have a good front.  I'm good at faking it all when I have to.
Everyday I'm making strides to fight this MdDS stuff.  It feels good to talk to people about it.  Spread the issue and what it involves.  Teaching those who have never heard of it and what it does to a person and their life. 
I struggle on a daily basis to at least appear "normal."  "Normal" in the sense that I don't want to look crazy walking.  I don't want to be confused with normal tasks.  I don't want to be frustrated, upset, or even lose my hope when it comes to living my new life.  People ask me all the time "How do you cope?" "How do you stay positive?" "How do you live?"  The answers are simple.  I have faith.  I have hope.  I have an inner strength that I never knew I had and I can share that new found strength with those around me.  I have days that I don't cope.  I have days that I'm not positive.  I have days where I feel I'm not living like I want. BUT I've always been a fighter.  I come from women who were/are fighters.  I struggle on a daily basis.  I fight on a daily basis.  But this is my life.  
I have had many struggles that I have had to deal with in life and with those I always had a happy smile on my face. I had to, mainly to protect myself, my family.  I stay in a good mood around everyone.  I don't show my struggles to most people.  I am a great actor to pretend that everything is fine.  So even when I look like I'm positive, I'm not.  Those closest to me can see the difference.  They know when they are looking at a facade.  They can look deeper and see that I hurt.   The old me is no longer and I've had to learn how to live with the new me.  The new me that struggles to find hope, strength, courage to keep moving forward. 
So what goes on behind the scenes?  Every morning I wake up and look around to see what is moving.  I tell myself, today is another day that I must fight.  I get up, get dressed (sometimes this will take awhile), get my kids ready and start my day in the outside world.  I have to watch my steps literally.  Is the ground flat today or is it warped?  The wall is standing straight up and has been in the same place since the building was built.  Remember to turn the faucet more to the cold setting just to make sure you don't burn your hands with hot water.  Check and double check where a cup is compared to the drink I'm pouring.  Hold onto an object until you are certain it is on a desk or shelf.  That person is sitting in front of you, they aren't moving.  I feel a hand on my back from Josh or Jake or mom, that means I'm rocking too much and need to focus on stopping.  There are kids in this room that are moving fast which means I need to move slower so that I don't trip and fall and hurt someone.  Watch for the corners, they cause major bruises on your shoulders so don't hit it.  My hands run down walls or reach out for corners so that I don't hit something I'm not supposed too.  There's tile in this room, don't look at it...so what can I focus on then?  These are just a few things that I have to deal with on a daily basis.  This isn't everything.  It doesn't even tip the iceberg and its a huge iceberg.  
So why put on a front?  I hate pity.  I hate someone being sorry for me.  I don't tell people my story for that reason.  I tell them so they learn what it is.  More awareness is a good thing, right?  I refuse to feel sorry for myself, so why should you feel that way for me? I know its a way for people to show they care, and not to be offensive, but it drives me bonkers! I don't want to feel bad, so I try not to.  That saying "it takes more muscles to frown than to smile,"  well I'm using too many brain muscles with everything else to sit there and get upset and be that way everyday.  Its too exhausting.  I've also found the more positive I am, the better I feel.  I'll keep my behind the scenes moments for me and enjoy the other parts of my life with those around me.  I don't have time to dwell on the misery of it all. It took me a really long time to come to this point.  I'm terrified everyday that I will wake up and be back to square one, but at the same time have hope that I will wake one morning and it will all be gone. 
Although I fight everyday to walk normal, focus on minor details, remind myself that the world isn't moving the way my brain thinks that it is, I don't make it my priority.  There are more important things in my life than letting this take me over.  I won't go back to day one because day one was scary.  I won't go back to week 1, because the frustration was taking over.  I won't go back to month 1 because I let the disorder take over who I was.  I won't go back to year 1 because that day I lost my hope.  I will live for today.  For my life and the strides that I have made.  I will keep putting on my happy face, because again, its easier for me.  "When it’s hard to find hope in the unseen, I have peace in knowing it will find me"

 

"Don't You Worry Child" (Acoustic Version)~Swedish House Mafia

I pulled a box of pictures out.  This shoebox holds pictures from my childhood until after I had my kids.  My entire life pictured in an entire box.  Some bring back good memories, some sad.  Its amazing what time will do with your life.  At 30 years old, I still live in the same town I grew up in.  In fact my grandfather lives around the block and my mom's house is only 10 minutes away with no traffic.  I have traveled throughout various states.  I lived in Richmond for four years for college, but I came back here to be closer to my family.  
In 30 years, I've made so many friends.  When I was younger my mother told me, you will have friends that will come and go, some that were meant to stay and some that will go away for good.  Some may come back when you need them most and others will never look back.  I never understood this statement as much as I do now looking back at all these pictures. 
I've never been a shy person.  My life is an open book.  I answer questions with honesty because what is any type of relationship without honesty.  I'm easy to befriend.  Friendships are important to me.  I try to hold onto those relationships as much as time will allow and when its time to let go, I do.  The friendships that have lasted have become more than friends, but more so family.  At some points I had a lot of friends, at some there were very few.  But those that who have mattered most have stuck.  They accept me for who I am, for who I'm meant to be.  They understand my life, what I've been through and they have stood by.  They know that I have had many trials in my life and still stand there supportive, strong, and push me to be a better person.  I've been fortunate to meet so many different types of people to bring in as part of my life.  I look back at some of the pics and miss those people.  I've been able to reconnect with some thanks to social media which is pretty awesome.  

As you get older you realize that people come into your life for a reason.  They have a purpose.  They have been brought to you for a reason.  Even if the relationship ends badly, you came out stronger, more aware of yourself and who you are meant to be. 
Take a look around you and realize who is there with you.  Could be that you have that one special person.  Could be that you have a lot of people who have different parts of you.  If you look hard enough you realize there are those that are there for the long haul and those that its just nice to have for that time being.  You hope that people will be around forever, but that's not how life works.  People move along, time doesn't stand still.  You have a purpose, a meaning for being here and those people around you will help you get to that point.  Surround yourself with those who you can trust and depend on and remember friendships are a two way street.  You have to be just as trustworthy and dependable.  You have to be open and honest.  Those true to you will be okay with your honesty even if its not what they want to hear.  They will accept you for who you are.  Remember they have their opinions and honesty too.  Accept it.  

Why go on this rant on an MdDS blog?  Well here's why....first more than MdDS suffers read this.  I have befriended many people who are at an age where this message, I feel, is very important for them to understand.  But also, it does have to do with MdDS and any other time that you are dealing with a huge issue.  The support of those around is imperative to healing.  Will it make our bodies stop rocking?  No.  But the amount of support those around us is so important.  Having someone you can vent to, talk to.  Having someone there to make you laugh, maybe even at yourself.  Someone who can distract you from the frustrations of it all.  Ask you friends to go with you to doctor

appointments, they can wait with you in the waiting areas.  Invite them (if you are comfortable enough) to go back and talk to the doctors.  Let them ask questions themselves so they can understand more.  Friends are there for good and bad.  They are an outlet to a world that we can't leave.  We are stuck on this rocking world and those people will help.  Sometimes they can be frustrating too because they don't understand, but you don't know what its like to have a friend with MdDS.  You won't understand how they feel 100% because you are them, they aren't you.  But you support each other.  We tend to lose friends when we go through trials in life, but don't let this one long trial let you let go of those that you need.
Thanks to all my buddies past & present who have helped inspire me to write this.  Thanks to those who have stuck by, to those who have come back, to those have been there through the worst with me and the best of times. 

 

"Unwritten"~Natasha Beddingfield

My niece wrote a quote from this song the other day, and it just spoke volumes to me, so I thought I would write.  I haven't written in awhile and that is because of the busy life I now lead.
Am I in remission?  No, not really.  I'm feeling better than what I did.  I have my good and bad days.  I'm living the life that I have been given to the best of my ability and that's all I can ask for. "Sometimes my tries are outside the lines."
I have been working.  Part-time, but still I'm working.  I'm pushing through some of my tougher days to get to work and do my best.  Do I accomplish all of my goals, no, not in one day, but I do get most of my work done.  I have to take breaks.  I can't sit and stare at a computer or print-outs for long periods of time.  Thankfully the company I am working for know my work ethic and understand that I'm not at my 100% most days.  They don't hold it against me and they work with me so I feel like I am doing good not only for them but for myself as well.
I am now a girl scout leader for a group of daisies and brownies.  My girls range from 5-7.  Fourteen girls to be precise.  I have amazing moms and a wonderful co-leader who assist with the troop.  The girls give push me in their own right too.  I have fun with them teaching them about life, sisterhood, and become independent strong leaders of tomorrow.  I feel like I have a purpose at this point in my life.  On my good days we work on crafts, the Girl Scout Promise, badge work, and on my bad days we play games that the girls can do on their own together and I can just supervise.  
I've pushed myself harder these last few months that I have ever pushed myself before.  I find this inner strength that is needed to shove down barriers and break down walls, barriers and walls that I had not realized I put upon myself.  My son, Seth, has had issues with writing since he started first grade.  He's gotten better, but he has placed these barriers up of feelings that he can't accomplish what tasks he needs to do.  In teaching him to say "I can" instead of "I can't,"  I've also pushed myself.  I've realized that I placed so many barricades that its no wonder I felt worthless and no good in many areas of my life.  
I've talked in the past about the wonderful support of family & friends that I have.  How their love and compassion and sometimes swift kicks in my butt, have made living with MdDS bearable most days, but there were these blocks in my mind that I had to push through myself.  The belief in myself that I will overcome the obstacles or I will learn how to get around them.  When you have these walls up, no matter the size, you need to look at all aspects of the wall.  Figure out, do I climb? dig under? is there a way to go around? or do I break through?  Sometimes you can come up with the answer immediately and sometimes it takes time, as long as at some point you deal with that wall.  
With MdDS, life will never be perfect, well, unless you like living on a boat 24/7. One thing it does do is make you stronger.  Think about it.  Sometimes its hard to remember what your life was like prior to having MdDS, especially for those who have dealt with this for years.  But who you were then, is not who you are today with MdDS.  Even if you don't feel like you are stronger, even when you have your weakest moments, you are stronger than you once were, because you have to fight each and everyday for your health, your sanity, your life.  You become someone stronger because you have to be.  Even when you don't want to fight anymore, when you are ready to give up, when you are at your lowest of lows, you are still stronger because you woke up today on a boat and you have to figure out how you are going to get up, make that cup of coffee and somehow manage to get one foot in each pant leg all while in constant motion.  You will struggle, you will fall, but its the strong ones who continually get back up and say not today my friend, not today.  
I have learned to embrace my MdDS.  Educate those who have never heard about it.  Accept what I cannot change and move forward.  Because the day that I let my MdDS alter who I am as a person is the day that it wins and I lose.  I'm not a loser.  I will fight.  I will motivate.  I will survive.  Not for my husband, my kids, my family, my friends, but for me.  I will survive for me. (Although I do have a pretty awesome family and great friends and they are worth surviving for as well.)
"Today is where your book begins."

"People Like Us"~Kelly Clarkson

Feeling like a failure is something that I still have a hard time not feeling.  Feeling like I'm not doing what I'm supposed to be doing because MdDS gets me down.  I've had some really awesome days in the past.  Days that I can walk through, push through and I come out feeling so good about myself.  At one point I thought I may be heading towards a remission.  I only had head pressure during bad storms and my rocking sat no higher than a 2 or 3.  
Monday morning I woke up for work.  I put two feet on the floor.  I stood up.  I feel back down.  I tried again and feel once more.  Striving to do what I needed to do, I got up again and immediately walked forward.  I pushed myself to get my kids up and ready to leave and went back down stairs and got myself ready.  It took Josh looking at me and saying if you aren't feeling right, don't go.  Don't hurt yourself.  I reluctantly stayed home, frustrated that I couldn't push hard enough. 
Tuesday morning I woke up for work.  I put two feet on the floor.  I stood up.  I feel back down.  I tried again and this time immediately walked forward.  I was determined to not let this get to me again.  I would go to work.  I would do what I needed to for my family, for myself.  I'm telling myself over and over again in my head that I can do this.  I'm not going to stay stuck at home again.  I'm going to work whether my body wants me to or not.  I'm not going to fail.  I can't fail.  I stand brushing my teeth, staring at the bottom of the sink as I fight back tears.  Coaching myself that I can't let this take me over again.  Again its Josh who speaks up..."Honey, you can't stand up straight.  You can't walk straight.  And its okay.  Stay home."  I immediately drop my toothbrush down and break down in tears.  I tell him I can't fail.  I can't be a failure.  I have to do this for my family.  "We'll be okay.  You can make up your time later.  We'll be fine."
I go back and sit at the edge of my bed.  He's right.  Its not safe for me to go anywhere or do much of anything.  I could hurt my kids in the car, hurt my friends at work.  I can't put anyone in a position of liability, its not right.  Its a selfish thing for me to do.  I stay home.  He leaves. I break down.
Then I think to myself....why do I let this stupid syndrome make me feel so low.  Why do I let it take over my emotions like that?  Its already taking over my body, I'm not letting it take over my heart.  I can't feel like a failure because looking back I've had worse times and persevered.  I'm driving again, working again, making strides to make my life better for myself and my family.  Why do I let it control me?  Its an invisible little speck of crap that life has dealt me.  Yes, I have to give in to what has been given.  I have to just deal with the ongoing rocking, bobbing, sea-sucky life that it is, but I'm so much more than this syndrome.  I'm stronger.  
So yes, I had two bad days of "living on the bottom" but came onto facebook.  I read over posts from my support groups I'm part of and there are others just like me.  We are all pushing through the same syndrome.  "We are all misfits living in a world on fire.....You just gotta turn it up loud when the flames get higher..."  PS>  The video spoke volumes when I was watching it....reminded me a lot of the beginning of all of this...

 

"Into The Ocean"~Blue October

So its not the greatest of pictures, but this is what I looked like after my first trip into the ocean after not being able to even look at it for over a year.  If you know me, you know my love for the beach is way up there.  I used to live at the beach in high school...(I know, gingers and sun don't mix, but you couldn't keep me away!) I used to board all the time and taught younger kids in my family how to do it after I was taught at a young age by my grandfather & uncles.  I was devastated last year when I couldn't even look at the water because it would escalate my symptoms.  
My goal at the beginning of the summer was to at least get up to my waist and try to just stay there.  I worked on going into the water at the bay which has no undercurrent and the water stays up to your calves for a long distance.  When I got to the ocean, I stayed on the shoreline with my kids until my little sister coaxed me into going into the water.  My little sister who comes up to my shoulders and I probably out weigh her by 40 lbs, held my hand and walked me through the breakers as if I was a little kid.  Once I got on the more solid sand I felt okay.  I last about 5 minutes.  Later that day, my little brother held my hand again and took me out.  This time I lasted about 10 minutes.  
What was weird is my rocking symptoms were going opposite of the way the water was actually rocking, so I decided not to push myself too hard and go ahead back to shore.  It luckily didn't make me feel bad and I felt accomplished.  
I was so excited that I had to tell everyone so now I'm sharing with you.  I wanted to share with my fellow MdDSers about this because I wanted to give a little bit of hope.  This time last year I could barely walk on my own.  I was mainly stuck in chairs and beds and couches.  Over the last year I have pushed beyond my limits to fight my symptoms and work through them.  I still have bad days...especially when big storms come through, but my good out-weight the bad and that's what counts.  
As my favorite Disney character always says "Just keep swimming!"~Dori

"Such Great Heights"~The Postal Service

Holy Moly it has been FOREVER since I last posted.  And looky!  ITS MY 100 POST!!
Not that I forgot about blogging, its just that life has been insane the last month or so....so on that note here goes...
I started working!  Part-time, but I'm working!  I work a few hours a day for a couple days a week.  I have my good and bad days with it, but the company that I am with is understanding thank goodness!  I love being back to work, and thinking back on this time last year, this felt like a hopeless dream.  I never thought I would have been able to get back to work.  Last summer was miserable!  
I push through most days, and the bad days I have to lay low.  Those days usually fall around days where big storms are coming through, which here in VA seems like a lot.  
I'm driving again!  I drive almost everywhere, again except for bad days.  I drive to and from work, also taking my husband to and from work.  I can do grocery shopping on my own now and I don't feel as trapped anymore.  
I haven't made any strides with filing for disability.  Seems my case has been put on a stand still because there has been no activity with it for months.  Even though I am working, I'm noting working fully and I have to miss a lot for those bad days.  If I wasn't with the company I am with, I highly doubt I would be working at all.  So, I'll keep pursuing it until I get some answers.  Its frustrating, but I need to do it.
Looking back a year ago, so much has changed and I feel so much better nowadays.  I'm not in full remission.  I still rock every day, its just a matter of how much movement is going on.  My biggest thing is the ear pressure that I get....IT KILLS!  
My kids are doing awesome and having a great summer so far.  Lily is officially starting Kindergarten in the fall and Seth with be a 3rd grader.  Can't believe how time has just flown by so fast for them.  They are both active in scouts.  Seth went to Boy Scout camp early this summer and learned how to do archery and BB shooting along with some basic swimming, sports and building.  He built this awesome tool box.  He also just participated in the Rain Gutter Regatta and had a blast making his boat with his dad.  Both kids went to vacation bible school as well and met a ton of new friends.  
I still get to keep my niece Keeleigh on Wednesdays and the three kids have a blast together playing.  
All-in-all, I'm surviving.  My family is surviving.  We are taking it day by day, but that's what you have to do in my situation.  
Hope everyone else is enjoying their summers!  Talk to soon!

"Many The Miles"~Sara Bareilles

Lots to catch up on!  So here we go...

DAY 17....Today goes to my Daisies.  I traveled with the crew to go to Busch Gardens on Sunday and Great Wolf Lodge on Monday.  GWL is an indoor water park/lodge.  I was actually able to go into the park as long as I stayed away from any fast moving water (i.e. the wave pool, surfing area, and there is a part that dumps 1000 gallons of water every 5 minutes...stayed away from that area)  I even got out to about mid-calf in some of the waters to play with my girls.  We had such a good time, and I was so excited to be able to see their faces as the played and had a good time with each other.

DAY 18....Today goes to work.  I started working back at my old job doing new billing stuff.  I have a place that is quiet and I can work without a lot of distractions.   Its a great start at working again.  I'm building my confidence back, and feeling like I'm accomplishing something besides sitting around gaining weight haha.  I'm back with my girls who always keep me relaxed and laughing.  So far my stress level is low and I'm doing well with it.  I'm excited to have my spot back :-)

DAY 19....Today goes to sleep.  (sorry no pics)  I slept most of today.  I had to catch up from the weekend and I finally started feeling more human by the night time.  I really needed the sleep, I was starting to feel really not good because of the exhaustion.  I'm feeling better though now and that's all that matters.

DAY 20...Today goes to catching up. I've been able to renew my driver's license, my car registration (both due the month I was born), clean house since I've finally got time around my house and now updating my blog.  It's been so crazy around here, I feel like I don't recognize my house at this point.  I've had to catch up on all my bills and everything this week to make sure I haven't forgotten anything.  My normal organization has been thrown out of whack this week with moving things around for the party.  So now I just need to get my life back on track at home....so on to my next project.

"Love Will Always Win"~Garth Brooks & Trisha Yearwood

DAY 16:  Today goes to my husband, Josh.  The man I knew I would marry since day one that I met him (I know it sounds cheesy, but its true).  We knew from the very beginning we were it for each other.  We have had really good ups and extremely bad lows, but we've stuck it out, push through the odds and made it to where we are today.  He's been my biggest support through this whole last year, pushing me where I needed to be pushed, picking me up when I couldn't get up and always had a hand against my back for support, just in case.  He's made me a better person, he's my other half.  We are polar opposites, yet there is something small that keeps us connected together and it works.  He has let me yell at him in anger over my MdDS, he's let me cry on his shoulder, and he has made me laugh when nothing else could.  
He's the best man that I could have for a father to my children.  I love watching them together.  He is their biggest fan and they are his.  He has fought off monsters under the bed and in the closets, protected Puppy (Lily's favorite little stuffed buddy) from all types of weather, fixed broken toys, help battle in video games, pretended to love Lily's favorite food she made in her kitchen, answered phone calls when no one was on the other side, and watched episodes of kids shows over and over again.  He is a wonderful father, and I couldn't have asked for anyone better.  
So thank you Josh for all that you've done.  You've always said the kids come first, me second, you last.  That you are the bottom of the totem pole, but today I want to lift you up and let you know that YOU are our everything.  Without you, there would be no Seth and Lily, and there wouldn't be who I am today.  I love you.

"Sorry For Party Rocking"~LMFAO

DAY 15:  Goes to parties.  I love parties.  I love gathering my family and friends together to have a celebration for anything.  However, when I was first diagnosed, gatherings like this were horrible for me.  The crowded rooms with tons of people, the noise levels, the streamers and balloons waving everywhere.  All of it would just add on top of all of my symptoms and make me feel worse.  
I also love to make fun cakes.  I'm no expert, however, I love being creative and in the end the kids like my cakes and that's all that matters.  When I first became diagnosed, I wasn't able to do the decorating anymore, but I've been practicing and working really hard and I was able to make my daughter's cake earlier this year and now Seth's cake yesterday.  
I enjoyed doing it, and Seth was happy.  Now his parties are all over with an now I'm onto counting down the last days of my 20s.

"Party Rock"~LMFAO

Day 14:  Today has to go to my son, Seth.  Eight years ago he came into my life screaming his head off and until his dad got him in his arms, he wouldn't stop.  He is so much like me, which in turn has us butting heads sometimes with our emotions, but he has a very caring and compassionate heart like I do as well.  
He was one of the first to see that something was wrong when I became diagnosed with MdDS.  He would notice certain things that most others wouldn't.  He would hold my hand when I had a hard time with walking on tile floors.  He would let me use him as a guide when walking down the stairs and he would always talk to me if I became extremely dizzy to the point of almost passing out.  
He's smart, funny, crazy, loving, and he's mine.  

"All Summer Long"~Kid Rock

DAY 13:  The last day of 2nd grade for Seth.  He is now officially a 3rd grade ending out the year with 4 A's and 1 B.  I couldn't be happier about these grades.  He pushed himself hard and ended up working alone some nights due to my MdDS, but he accomplished what he needed to do.  I'm so excited for him.  We celebrated at the zoo walking around looking at animals and then let the kiddos play in the fountains.  It was an extremely hot day, but the kids had fun and now everyone is home relaxing in the cool air.  Big storms are heading this way tonight, I can already feel the pressure in my head starting, but I'm going to push myself and get through it.  I'm going to keep doing what I need to do.  Today is the official start of summer for our house and we are going to have lots of fun....I'm determined :-)

"Laughing Until We Cried"~Jason Aldean

DAY 12:  Although the pic is from a couple of days ago, it showcases what I need it to.  With MdDS you have those really horrible days.  You know, those days you can't get anything done because you are literally stuck down.  Getting up and moving in any direction takes every ounce of yourself.  Those days used to get me down, and every once in awhile I have my moments of being angry and pissed and upset.  But lately, I try to laugh it off.  Yes sir, I'm plastered to the floor, what are you going to do about it?  Why yes, the ceiling does look great from this angle.  
I have such an awesome crew around me daily to help me laugh at the situation, at myself or they take my mind off it completely and make me laugh at them.  You have those moments of did you really just do that? did you really just say that? and just laugh hard.  
I watched an episode of Ellen a while back when she had Kelly Pickler and Derek Hough from Dancing with The Stars.  They were talking about tough times in the studio and when it became too intense they would laughing yoga.  (The video won't add, but if you want to see it just YouTube "Derek & Kellie new ab workout laughing yoga")  But anyways... I thought...HOW GENIUS!  Because you can't help but start cracking up at yourself.  It's brilliant.  So on those bad days just laugh at yourself.  It makes it better, and if you can't laugh at yourself, have someone help you, I'm sure they'll find something about you to laugh at :0)

"Into The Ocean"~Blue October

DAY 11:  Today I took my first steps to get myself back into the ocean.  I went up to mid-calf and didn't have any issues.  My only thing I had a problem with was watching the waves for long periods of time.  Watching the waves come in and out bothered me after awhile, but I had a lot of distractions with my family there and the kids playing.  But I handled it.  We are planning to go back a few more times and as the water warms up I'll go in deeper.  But I took my first steps and I was very proud of myself.  I said that by the end of this summer I would get myself back in the water.  I want to get back to boarding again.  I want to be the one to teach my kids.  I want to teach my kids to swim.  The only way that it can be me is if I am the one in the water.  I'll get there, today was my proof.  My oasis, my saving grace in rough times, has always been the ocean, and I'm going back to my favorite place and one day I'll be able to stand in the sand and not feel sick.  I will do this. 

"Walk"~Foo Fighters

DAY 10:  At the end of last summer, I pushed to be able to walk normally through my neighborhood.  My goal was to at least get to my son's school and back without incident.  The school is almost a full mile there and back.  I was able to do that walk and have been able to continue to do that walk for the entire school year.  Today started his last week of school, so will be my last week of walking there and back.  I have come to enjoy this walk.  Our neighborhood is very peaceful and quiet and the neighbors that you see are very friendly.  You see familiar faces and even become friends with some of the other parents who are walking as well.   Seth and Lily have had days where they would literally run the entire distance, and then others where the complain and whine.  But for me, the fact that this time last year I wasn't even able to walk to my driveway without help, and now I can walk this distance and then some...I am proud at how far I've come, literally.

"Life is a Highway"~Rascal Flatts

DAY 9:  Ladies & Gentlemen....I DROVE TODAY!  woo hoo!  And, not just in my neighborhood, but through Norfolk and a small part of Virginia Beach.  
I know the pic looks crazy.  Josh had a hard time taking it while I was actually driving, but I don't care because I DROVE TODAY! 
It's been over a year since I've been behind the wheel for a long period of time.  I have tried around my neighborhood, but it hasn't worked well in the past.  I've been have a lot of really good days where my symptoms are really low, and today they were barely noticeable this morning when I woke.  I wanted to try.  I went to one location and then we had to drive farther out to another so I decided to just try.  Won't know until you jump right in...right?  
When I got out of the car, I did have some elevated symptoms but they went away in just a few minutes.  I didn't do the interstates, but I did drive some of the busiest roads in our area.
It was amazing to have that feeling of driving again.  I know I can do this, and it just brings me closer to my goal of driving on my own.

"Love Is A Battlefield"~Pat Benatar

DAY 8:  Today I want to tell you about two people who have always had a huge piece of my heart before anyone else ever did.  My little sister and brother.  We have been through everything and anything.  We have fought with each other and for each other.  Always becoming closer, always becoming stronger.  They have been my rock, my strength, my friends.  As the oldest I've always had this sense of protection for them.  They are the first ones to pick on me but the first ones to open their arms in times of need.  I'm very fortunate to have siblings as wonderful as they are.  

Through this whole ordeal with MdDS my brother has been one to bring me humor, to make me laugh, and to literally catch me when I fall.  He has literally held up when I couldn't stand on my own.  He has been one to make me smile, even when I didn't want to.  

My sister has been my pillar of strength.  Even if she is 6 inches shorter than me, she as been the one at my back, helping me push through some of the darker days.  She is the logical while I'm the emotional.  She is rational where I'm irrational.  She is my "simmer down now" button....haha.

We are three completely different people, with completely different personalities, with different strengths and different weaknesses.  However, we compliment each other.  We have moved through life everyday with unbreakable strength and love.  

My mother used to say, "One day you will realize how much you need your sister and brother.  You will realize that there are people in this world that will always come and go, but they will never leave your side."  She was right...but to talk about her is for another day.

"Have You Ever Seen The Rain"~Creedence Clearwater Revival

Photo courtesy of www.weather.com

DAY 7:  All day today we get to have love Tropical Storm come through our area.  I felt it start pushing through early, early this morning and its going to continue pretty much all day today.  Lots of rain and wind and pressure!  My head is killing me, but alas I'm a mom and can't be down and out, so I got up and  made my goals for today.  1.  Make sure Seth gets to school today.  2.  Update my blog  3.  Read at least 3 chapters of my book (this helps me practice with a work type environment with reading while dealing with the head pressures).  No its not a lot of goals, but on days like today, I have to keep my goals low.  Its a way for me to continue to stay positive and feel good that I can accomplish things even on bad days.  I used to love storms like this coming through.  I would just sit with the windows open listening to the rain fall, now I watch updates to see how much longer I have to suffer.  One day, I know, I'll be able to enjoy these storms again.

"No Shoes, No Shirt, No Problem"~Kenny Chesney

 DAY 6:  Today started off as any other day, until hubby texts and says "I got 4 free tickets to see Kenny Chesney tonight...You want to go?"  I think my reply was "Hell Yes! Don't even have to ask."  But then I saw that it was supposed to start raining tonight.  Tropical Storm Andrea is on her way, which the weather channel predicted about a 60% chance of rain starting right at the time of the concert.  After a little bit of thought and talking with the husband I decided, why not?  The tickets are free, its a great way to see how I handle concerts because there are a few I wanted to catch coming up, and if I don't feel well we can just go.  
So I went, and I had a blast!  The strobing lights got to me some so I just looked away from them when they bothered me.  The kids were a great distraction as well so when I needed a break from the stage I would sit and watch, Lily especially, dance around and have a good time.  Me and my MdDS rocked out to Kenny, Eli Young Band and Kacey Musgraves.  I'm sure I'll feel it tomorrow especially since the storm is hitting then, but I don't care because I saw Kenny Chesney, in concert, for free.

"Come & Get It"~Selena Gomez

DAY 5:  This is Keeleigh, a.k.a. Kiwi, my two year old beautiful niece.  I've had the joy of taking care of her during the week.  This little girl has pushed a lot of my MdDS boundaries.  There are no bad days when she is around because she won't allow them.  Even when I'm at my worst, I'm still playing with her toys, reading her books and making her food.  This little girl loves music as much as I do and her favorite thing to do is sing and dance around to it.  Even when I'm rocky, we are on the floor dancing around.  She makes me more dizzy some days, but its worth it to listen to her laugh and have fun.  She and my daughter love to play together.  They have become really close over the last few months, more like sisters than cousins.  She and I both learned how to go up and down the stairs together in my house, she has pushed me to cook more, and she has taught me that the 12:00 nap is oh so good.  I love this little one and cherish every moment I have with her.  
PS> She picked the song....she sings "Na na na na"

"U Can't Touch This"~ MC Hammer

DAY 4:  I tackled today with both feet on the ground, even if it didn't feel that way at times.  This time last year I could barely move from my bed to my living room.  I couldn't walk without leaning against walls or holding onto someone else.  
Today I was able to clean a lot of my house, do some laundry and even cook dinner.  Two days down, so today I tackled hard.  I took care of all my pets (we own a zoo at this point), took care of my kitchen, including scrubbing my new floor (still so proud of that), picked up and a couple of rooms from the kids bringing home from school and scouts, and sorting through recipes for dinner.  As you can see in the picture, I was even able to use a real knife.  I took it all on with a brave face and when I got a little too rocky for my taste, I would sit.  So there you go MdDS..."U Can't Touch This."  Day 4=Kicked major butt!

"Rain Is A Good Thing"~Luke Bryan

DAY 3:  Today has been rainy here in VA.  Because yesterday was so bad, and I had absolutely no sleep last night, I decided it's best if I just stay low for today.  I came to find a few months ago that I love my Nook, because on days like today where I'm physically exhausted I can now read.  I still haven't been able to accomplish regular novels, but with my Nook I can fix the settings to that I can read.   It started with only being able to read a page at a time to now I can read most of the day away and be okay.  This has also helped with my computer usage as well as using my phone for things besides phone calls.  This was one of the things that was the hardest for me to let go last year and for me to be able to enjoy reading again has been the best feeling.  My Nook has also expanded my library of authors that I love.  I'm hooked on a few different series and still love to go back an re-read books that I've had in the past.  So, here's to reading and reading some more.  I'm going to get back to my book now.

"Girl On Fire"~Alicia Keys

DAY 2:  
Oh wow.  I woke up today and immediately felt symptoms before my head was off the pillow.  I tried not to panic because today Lily was singing her last performance at church for awhile and then I had a Bridging Ceremony for the Girl Scouts.  So, instead of panicking, I cussed out MdDS and I pushed myself harder than I have in a long time.  I literally pulled myself off the floor a couple of times today to be able to do what I needed to do.  We made it just in time for Lily to sing (no thanks to my episodes).  I came home and rested and was able to pull through.  I started co-leading a Daisy troop with my second momma Jessica.  One of my Daisies moved to the next level today during the Bridging Ceremony.  I was designated to speak and introduce all of the scouts who were moving up to the next level.  I spoke in front of a very large crowd of Girl Scouts, leaders, their family & friends.  I had episodes of rocking while at the podium but I'm sure I was the only one who noticed.  I even was well enough to have family dinner with mom, siblings, husband & kids.  Almost didn't make it out of my sister's house, but here I am.  Now to rest so I can bring on Day 3.  

"Brighter Than The Sun"~Colbie Callat

DAY 1:  
Today I started off working with my son's Boy Scout pack to clean the Chesapeake Bay.  This meant walking, a lot, on sand.  Also lots of bending over to pick up items and then standing back up, getting hot, working with a large group of people.  But this is something that has always meant a lot to me.  I used to do work like this in high school and I love our bays and beaches here in VA.  It was a way for my family to give back.  So I rocked (haha get it?) my MdDS shirt (thanks Meredith & David), and pushed on to clean up.  Our pack collected 240 lbs of trash off the bay in our section.  It felt amazing to be able to do it.  
I learned last summer that I love walking on sand because it shifts with me.  The way I want to walk, the way I need to move.  My symptoms stayed low the entire time only rising just slightly towards the end.  
This time last year I was laid out, never even thought to go near water because it would just make me feel ill...I walked to the water's edge today and was actually able to watch the water move in and out.  Granted, this is the bay, not the ocean.  The waves come up to your ankles not your waist, the water rolls in on these sandbars so its not so much at one time, but we will get to the ocean.  I'm determined!

"Come Sail Away"~Styx

June is MdDS Awareness Month....Stop the Rock.  To support research and funding please visit www.mddsfoundation.org and donate today.  You can also buy shirts as well as check out any information regarding this syndrome.  

It has been a year.  A year since my favorite ENT said, over the phone mind you, "No Sara, you don't have Vertigo.  You have Mal de Debarquement Syndrome.  I'll see you in my office so I can officially diagnose you and we can figure out some ways to try and help.  I'm sorry but there is no cure, and no treatments for it except to try and help with symptoms.  It hopefully will go away on its own.  It could be a tomorrow, a week, a month, a year.  We just don't know."
A devastating feeling knowing that you are stuck on a boat and you haven't even been on one.  I joke my friend and tell him all the time that I will never forget his wedding anniversary because it coincides with my diagnosis. 
But over the last year I have come to learn a lot about myself and my family and friends.  
i felt like rock bottom had hit last summer.  I spent many a days laid out on the couch or even in bed.  I had to have items in a basket set close by because when I was home alone it was the only way to get what I needed.  I couldn't do much of anything.  Reading was a negative because the words move.  Cooking was a big NO because I swayed to much for it to be safe.  Movies flashed too fast.  Big crowds scared the living day lights out of me.  I would have to crawl to reach my kids to tuck them in, I would have to have help in and out of the shower and even sometimes with showers.  I learned to love my floors because, well, I spent a lot of time laid out on them.  I couldn't walk in tiled rooms or stores for that matter.  And anything with a pattern was definitely not a good thing.  I lost my independence which was the hardest for me.
But I have coped.  I've learned to retrain my brain to certain things.  I still have a long way to go, but I'm pushing through and moving forward.  I try not to let the bad days set me back too far.  I try to stay positive and have a positive frame of mind.  I have gained some of my independence back.  I still miss the old me, but what I've learned is that this syndrome has made me so much stronger.  I'm a fighter, and I have fought for the last year to get to where I am.  
I have an awesome support team.  My mom, sister, brother, my cousins and grandparents, aunts and uncles, my in-laws, my kids but most definitely my husband.  Even my friends who live miles, states even away, they are there to listen to me vent, complain, but also to push and motivate.  And then the support groups.  Somewhere to go and talk to people who you've never even met, but you have a common bond.  
June is a good month.  Not just because it is Awareness Month but also it is the countdown to me leaving my 20s behind and entering my 30s.  So I've set myself up for a goal this month.  
My goal this month is to write about what I have been able to accomplish each day.  I will post for all 30 days of June with pictures to show that MdDS will not bring me down.  I will continue to fight.  I have been fortunate enough to have good enough days to do this and set this goal.  I know there are others who are less fortunate so I do this for you too, in hopes that one day you too will have a good symptom day.
 

"End of the Road"~Boyz II Men

Song choice came from me and my sis rocking this song out on our trip back from South Carolina.  Also seemed pretty appropriate for the way that today's post is going.
I survived the trip.  I did pretty well going down.  I traveled with Josh and my kids, my sis and her little 2 year old and my mom.  We went to visit my dad and grandparents.  I used to try to get down there once a year, but didn't get down last year because of being diagnosed.  I miss my family down there and enjoy every visit while I'm there.  
We traveled really late Friday night and arrived in Spartanburg at about 6:00 in the morning.   We stayed the weekend and drove back on Monday.  The trip is about a 6 1/2-7 hour trip.  I was doing good until about 2 hours left of the trip I started feeling it.  The rocking, the headache, the nausea.  But I tried to not think about that, and pushed my concentration on singing and dancing around with my sister and being goofy.  
The trip down I took all of my meds that I have which consisted of a Transderm scope patch, Valium, Meclizine and Phenerghan.  The trip back I didn't have a patch on and I couldn't take my Valium because that's only for night time.  I still did really well.  I was very tired that night and into the next morning but I was expecting that.  Besides, most people feel that way after a trip like that, so it was no surprise.  
I was worried about waking up Tuesday and feeling symptoms, however, I actually felt pretty good.  I felt like my "normal."  I still have my rocking and swaying, but I can deal with it.  I felt great about myself being able to push through the chaos of a long distance trip in such a short period of time.  
Yesterday was officially one year since I started having symptoms.  One year of continuous rocking and swaying.  My world literally shifting and moving, when I'm standing still.  I've had friends go on trips and come off of boats or planes and feeling a tiny bit of what I have felt every day.  For anyone to feel this for even an hour is too long.  
I've been having way more good than bad days and I'm hoping that this is a sign of a remission coming soon.  Even if I have to deal with the little amount of rocking that I have I could handle that.  Fingers are crossed that I continue to feel better. 

"Get Out of This Town"~Carrie Underwood

This time last year I was preparing to go see my bestfriend get married in Pennsylvania.  He wed his beautiful wife on May 26th and I drove home May 27th.  The next morning my world was completely different.  Here is what I wrote one year ago on facebook to notify friends and family what had been going on for a week:

"Everyone has been sending me messages about whats going on so here goes:I've been feeling like I've been on a boat for the last 1 1/2 weeks.  It makes me not able to walk around without help or support.  I can't stand or sit up to much or it comes back.  If the dizziness stays while i try to walk or sit up I will pass out.  Last week the first doctor said i just had a virus that was Wednesday and gave me meds to help with the dizziness and nausea..well that only put me to sleep for hours and didn't help. By Saturday morning I couldn't move my lower half without having excruciating pain.  All of my joints hurt, so this time we went to the ER.  They started me on a IV fluids and gave me zofron to help with the nausea and took a bunch of blood work and ran an EKG to check my circulation.  They sent me home with zofron and patches to put behind my ear to help with the dizziness.  They said I was just very dehydrated from being sick earlier in the week.  I started feeling normal again when I got home, but I did what the docs said and took it easy.  On Sunday I started to feel the symptoms start coming back but not as hard as they were.  I woke Monday feeling like I would try to go to work.  I got up and dressed and took Seth to school.  On my way home, which is only a few blocks away) I started to feel like the I was going to black out.  I got Josh on the phone to talk to me to make sure i made it home again safely, and when I reached my drive way I did end up blacking out  Lily was there to talk me back.  It was the scariest moment  in my life because at this point it is my kids are in danger of what is going on with me.  I had my mom take me to the ER again.  They gave me more fluids and pain meds for my joint pain.  They ran another EKG, MRI, CAT Scan and more blood work.  Everything came back fine.  They did send of blood work to check for Lyme Disease which I won't get those back.  They then diagnosed me with Vertigo and gave me a bunch of new meds.  Its now Thursday and I still feel like on a boat.  Yesterday I know for sure I passed out at least 2 times, however I tend to pass out and not know that I do.  The meds are making my eyes dry really bad so I can't wear my contacts because they are making my eyes irritating.  It also makes my vision so blurry at moments that I can't see my phone for texts but that comes and goes.  The pain is gone for the most part, but I walk around like I'm a drunk and can't do normal things like taking a shower, my strength is very weak and I become very shaking when trying to focus on doing a any tasks, even something so easy as pouring a drink.  I'm not allowed to drive anymore and I've been pulled out of work.

Today I"m going to see my ENT doc Dr. Dorofi to see if he can give me some answers because just from our phone call the other day he doesn't think its Vertigo with the symptoms I'm having.
Josh has been my rock through all this.  Literally catching me as I fall, holding my had for lab work, and helping me without making me feel like I'm losing all control.  My mom and brother have been there to help to keep my spirits up by helping me laugh through all of this and helping drive me places.  And for all the texts and messages here on FB I thank you because it has been helping as well.  I'll keep everyone up to date as to what is going on.  I'm sorry to those I haven't called in awhile or sent messages to,  but its been very hard to do.  Even typing all of this has been very hard to do.  So thank you again for patience, thoughts and prayers.  You all have really lifted up my spirits through this very frustrating time.  Its been very hard not to fall into a depression state with all of this, but you all have helped me pull through."
Wow, how much a year has changed.  I'm still dealing with my symptoms, but I've been having more good than bad days, which is awesome.  I'm pushing through and moving forward trying to reclaim my life.  I have really awesome friends and a wonderful family who have been there every step of the way. 
Now, one year later, I'm heading out on my biggest trip since I was diagnosed.  I'm heading to SC to see my grandparents and dad.  Its been well over a year since I have them and I've missed them a lot.  I'm excited but nervous with traveling.  I'm pulling at my faith to get me through this weekend.  I'm going to be pushing myself the hardest that I have in over a year.  I can't wait to get on the road tonight.  Who knows?  A trip like this could be what pushes me back to 100% normal.  Fingers and toes are crossed that I don't regress and I can come out of this trip at least feeling how I feel now.  Here's to safe travels :-)