"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.