"Waves"~Mr. Probz

I am one of those people who is okay with being able to talk about MdDS.  I don't do it for attention, but for awareness on a disorder that is so misunderstood that there are even doctors out there saying that it doesn't exist.  Its hard to be a person who looks well on the outside, but has all of this internal struggle going on on the inside.  
I push for awareness.  I speak up and try to explain it the best of my ability.  Even when I am symptom-free, I still speak up and talk about it.  
Unfortunately there are people out there who are unable to speak up like I can.  Because of their jobs, or worse, having no support and people not believing that this condition is even possible.  
Here are some problems we MdDSers have that I have found across the board:
1.  We can't just act "normal."  In fact, for most, this is our new normal.  
2.  We can't pretend it doesn't affect us.  Actually, trying to do this causes us more stress and then worsens symptoms.
3.  Its not "all in your head."  Well, technically it is, but not how you think.  This is an issue with the inner ear, vision and brain.  So yes, it is all in our heads, but we aren't making it up or acting just to get attention.
4.  Remission does exist.  Yes, there are a lucky few (I being one of them) that have had periods of remission, but for a lot of those people the symptoms do eventually return, sometimes worse than the original onset.
5.  I apologize in advance for forgetting you invited me to a party, or I forgot to pick up a certain item from the store, or I ask you to repeat something over to me because it takes me three or four times of you telling me the same thing to remember what you said.  Its called Brain Fog, and it really does exist.
6.  Don't mind me, I'm just having a panic attack in the middle of the mall with no escape because the crowds are moving too fast and the lights in the windows are blinking and I can't focus on what is happening around me.
7.  Yes, I've talked to a doctor.  No, they can't help.  The meds give symptoms I would much rather not deal with.  Rehab treatments can only go so far.  
8.  Yes, I'm frustrated.  Yes, I'm crying again.  Yes, I'm shocked as well that I don't have a bald spot from wanting to rip out my hair with this.
9.  No its not vertigo.   Vertigo is a broad term for motion disorders, however it includes spinning.  MdDS is a rocking motion, a distortion of vision in some cases, a constant feeling of motion sickness and much more.

Here's the thing, MdDS is a disorder that is so insane that the sufferers are doing more research than the medical field.  We talk with each other, post out possibilities and approach those few physicians who do believe us with ideas to try and see if they help.  We are finding connections with each other such as cardio issues, or migraine sufferers, from triggers to treatments.  We throw out what meds have helped and what hasn't.  The thing is, what helps out a few, doesn't for most. 

Its an every day struggle and even for those of us who have had the joy of remission, even if was for a few weeks or months, we continue to support each other because we never know when it will return, or if it will return.  

So what do I ask for?  
Understanding.  I've been fortunate enough to get that understanding from my family, my friends, my co-workers, my fellow MdDSers.  But I'm one of the lucky ones.  
Answers.  Why does this happen and how can we make it stop happening so no one else ever has to deal with this disorder.
Support.  So many people just need someone to say "I've got your back"  "You're not alone" "We are going to get through this"

I leave on this note.  MdDS is an internal struggle for every sufferer.  Its not just about the adjusting, its about coping and fighting yourself internally to figure out what the hell is going on with your own body.  Its a matter of having been an independent person to relying on those around you even for the most mundane tasks.  To fight your pride and ask for even the slightest bit of help.  An internal struggle to be okay with cards you were dealt with so that you can fight to live each day as best you can.  

~Sara

"Love Someone"~Jason Mraz

So we had our annual trip to Nags Head starting this past Saturday.  It was AMAZING!  I was able to get out into the water and actually swim around in the water.  Now granted the water was really flat & there was no undertoe at all, but I was out with waves and was not triggered at all.  
It was a much need vacation to have with my family.  Just to get away with them for a few days felt great!  I was so proud of my kids to get out in the water.  My son was doing really well with boarding on his own and my Lilybug was out swimming on her own as well (with an adult close by).  
I've looked back on these last few symptom free months and I'm so happy with all that I've done.  I've done a ton of things that most people take for granted, but for me they are huge accomplishments.  
I promised myself that I wouldn't live in fear of what tomorrow, or even this afternoon would bring.  I look to each day as my first & possibly last day of symptom free days and live it to the fullest.  Am I scared that I'll trigger my MdDS, well yes, but I can't live in that fear.  I can't see my kids saddened because mommy doesn't want to try to do something.  Besides, how can I teach them to face their fears if I don't do it as well.  
I've had so many great things happen that I can't see myself backing down again.  So I started working more hours (soon to be full time), I've ridden a couple of roller coasters, driven many a miles on my own and with company, walked many flights of stairs, ran races with my Girl Scouts, gone camping with said scouts, started decorating cakes again, read more & more books, and now swam in the ocean.  I didn't get a chance to actually go boarding due to the surf not being strong enough, but the summer isn't over and I only live a few minutes away from the beach, so hopefully I'll get there before it gets too cold.  
My amazing husband keeps me going forward and not looking back.  He stays encouraging and supportive through every task that I accomplish.  He's there to give me high fives on even the most smallest of challenges (riding in an elevator without falling over, climbing a flight of stairs without tripping, watching flashing or moving lights in a movie or on tv without having to close my eyes)
This has been an amazing journey and I'm so fortunate and lucky to keep moving forward with my everyday tasks.  I only hope that more MdDSers will get to feel this way one day.  

"So Far Away"~Staind

Life has changed....I know that it is ever-changing, but for me its been almost a huge dramatic change.  These last few years I have learned more about myself than I ever thought possible.  What I once dreamed of has come true.  I look at today in new light and I'm so grateful for it.  

One of my favorite authors posted on Facebook "What is one thing that you take for granted?  We try our hardest not to do this, but we all are guilty of it."

I had to think about this long and hard.  Ever since I went into remission, I promised myself not to take anything for granted anymore because it could all be gone again in an instant.  Every morning I wake up and go to work.  Most people dread Mondays, but I no longer do.  Even on my stressful days at work, I accept it with open arms, because for over a year I couldn't work.  I couldn't support my family financially in any way.  Honestly, our family struggled and it was very difficult at some points, scary even.  Now I can wake up and go to work.  I am now working full days four days a week and a half day on Saturdays.  And I love it.  I'm happy at my job.  I'm where I'm supposed to be.  Every day I get to get in my car and drive.  I drive to and from work for myself & my husband.  I spend time jamming out to music again, even if my kids can't stand my singing, and on a good day they join me.  I come home to a husband who loves me more & more everyday.  Our marriage is strong, our faith in each other even stronger, and the love is immeasurable.  Every night I get to walk up a flight of stairs to tuck my kids in their beds.  I get to bend over and hug them both.  I get to hold them and only let them go when I'm  ready to.  I love my showers I get to take without any help from anyone.  I'm back to doing what I love to do for and with my family.  Traffic sucks, but getting to Busch Gardens to ride rides with my kids is amazing.  Making plans for my Girl Scouts is hard, but to see their faces when we get to hang out is so much fun.  I'm dancing again.  I'm moving again.

I try to find joy in even the smallest of tasks because I wasn't able to do any of this for a very long time.  I'm grateful for being able to get up everyday.  Literally get up and move.  To take for granted anything that I have been blessed with is unacceptable.  

My family gave me strength and courage and continue to do so.  I've made it so much farther than I ever thought possible.  They kept their faith and hope that one day I would be back to the Sara they always knew, however I'm never going to be her again.  Yes, I'm back to being outgoing, funny, loving, caring, but I'm never going to be the girl who kept going through life day by day any longer.  I'm never going to take what I have been given for granted again.  I'm tougher, stronger than I ever was before.  I try to smile more.  I try to take the time to be happy with my life. 

I was given a crazy journey to go through life, but I'm so happy I went through it.  It made me a better person.  I have more strength in my faith, my happiness and most of all in myself.  I had to face this journey for a reason, and I feel that I'm going to continue on the right path of this journey.  

"This is my life, It's not what was before, All these feelings I've shared,  These are my dreams, But I've never lived before, somebody shake me cause I, I must be sleeping, And now that we're here so far away, All the struggle we fought wasn't in vain, And all the mistakes that one life can take, they all finally start to go away, and now that we're here so far away and I feel like I can face the day, And I can't believe that I'm not ashamed of the person that I am today, These are my words, I've never said before, I think I'm doing okay..."

"Riverside"~ Agnes Obel

HOLY COW!!!  Tons to catch up on!  I'm going on three full months 100% symptom free!  No rocking, shifting, motion in my own ocean.  No headaches, ear pressure, ear pain.  No dizzy, falling, fainting.  NOTHING!!!  It has been an amazing feeling that I pray all my fellow MdDSers feel one day very soon.

I made a deal with myself that as long as I felt good, I wouldn't live in fear that it would come back.  In the last three months, I have walked numerous miles, driven even more.  I've extended my work hours to the point were I'm just one day shy of working a full work week.  I've gone swimming in a pool.  I've gone to the movies. And the ultimate....riding Apollo's Chariot at Busch Gardens!!!  I was an avid roller coaster rider before all this happened and I'm pleased to say I came off that ride, balance still in check!  

It has been an amazing journey with so much more to come!  The family and I are going on our annual cottage trip in two weeks, so I plan to get out in the water and even go boogie boarding again.  I cannot wait.  This time last year the water made me so nervous.  I was able to get in for just a few minutes with my baby brother holding me tightly so I wouldn't lose it.  This year I'm going all in.

I've always known that life is too short.  Changes happen too quickly and to experience life every day is a gift.  This experience has proven that.  I wouldn't not change these last two years for anything.  Yes, having this horrible disorder was no picnic in the park.  It was stressful, discouraging, debilitating, but it was also a learning experience that I will never forget.  

I have come out on top, stronger than ever.  My marriage is stronger, the love for my kids has grown exponentially, my friendships even more powerful, and my family even more cherished.  Even more so, my faith has grown to new levels.  The power of prayer and persistence in knowing that God has pulled me out of that dark world.  I always knew I was in His hands, but I know it even more.  All the little things that I took for granted that He gave me, are even more so cherished.  

I look back and realize that with these last two years, although stuck at home from working or doing much of anything, gave me time that I never had before.  I was able to spend time with my daughter before she started her first year of school.  I was able to bond with my niece as I watched her at my home, helping and teaching her to grow into a beautiful little girl.  I was able to be home and help take care of my grandfather after he recovered from heart surgery.  I was able to become a leader to my daughter's Girl Scout troop and bonded with 20 other little girls and many more bigger girls who have all taken a place in my heart.  I've tapped into writing again, and love going back to read all of what I have accomplished.  

I don't complain about having to go back upstairs because I forgot some, because now it is no longer a struggle.  I'm not crawling up them anymore, well, unless I'm playing around with my kids.  I love to go shopping and don't mind running into a grocery store, because there is no fear for lights, tiles, people.  

For those still struggling with this disorder, the advice that I can pass along is to stay strong.  Have faith that someday it may leave you.  And if it doesn't cherish the little accomplishments that you do everyday.  You got out of bed today and moved to the couch.  You could brush your teeth without having to grip the counter.  You were able to wash 4 plates, 2 bowls and 5 cups.  You read one article of a newspaper.  You pushed yourself to tuck your kids into bed tonight.  You were able to sit and put your shoes on and walk to the end of the block, so what if you looked drunk while you did it.  Its those little things that help you stay positive and sane.  And the biggest thing that helped me....laughter.  I laughed at myself multiple times and didn't get offended that people laughed at me.  

I'll continue to write, but as time keeps slipping by me, it won't be as often as the beginning (as you can tell).

Much Love, Sara

"We Are Giants"~Lindsey Stirling

Today is day 4 of no symptoms.  Its been such an amazing feeling, strange but oh so wonderful.  Since my last post, I've had a lot people contact me with well wishes which I appreciate, but also they have sent a ton of questions.  I've compiled the most frequent so here goes:

1.  Did I use any medications?  Sort of.  I only used Meclizine to help with my nausea and Valium some nights to help me relax to be able to sleep.  In the beginning I did try various medications, however none helped.  A lot of the "suggested" meds that help some people would not work for me because I have adverse reactions to them.  I very rarely use any of my meds unless I absolutely had to.  

2.  Who helped diagnose me?  The first person was my ENT specialist.  This guy had performed surgeries on my children and he also worked side-by-side with the doctors I work for so I trusted his opinion.  The second was a neurologist who pretty much stated the same as the ENT.

3.  How long have I suffered from MdDS?  Two years as of May 28th.  Two hard long years.  The first year was very tough, but I started to push myself harder and within the last year I started to have more good than bad days.

4.  What did I do to lose my symptoms?  This question is very hard to answer.  The problem is I really don't know if it was one thing or another that I did.  I literally woke from a nap and the rocking was gone and has stayed gone now for a few days.  I did try vestibular rehab and I continued to work on the exercises I learned.  I walked a lot, even if I didn't want to.  I basically did different things to try and trick my brain into thinking I was doing something different.  I found coping mechanisms like listening to music when I felt anxiety.  I practiced over and over again to read again because books always helped me leave the world I am in and jump into another place & time.  I pushed myself on my good days, and laid low on my bad days.  Most importantly, I stayed positive.  When I couldn't stay positive I had an amazing husband, mom, and family who helped me stay positive.  I got to a point that I had to laugh at myself.  (I'm not saying this disorder is a joking matter, but I have to find humor or I'll lose it).  

5.  Do you think you are in remission?  I have no idea.  I hope that I am.  I hope this is the end of this ordeal.  But I am cherishing every day that I am given symptom free.  I know what to expect if it comes back and I know what I need to do to handle the emotions that come with it.  

6.  What is your current playlist now that you are "rockin" out and having fun?  I LOVED THIS QUESTION!   Right now its a total mix of different music.  A little country, some hip hop, lots of rock and pop.  Music that I can blare and dance around to.  I can't write all of them but here are few:
"Shatter Me"~Lindsey Stirling feat Lzzy Hale, "Play It Again"~Luke Bryan, "This is How We Roll"~Florida Georgia Line, "Look After You"~The Fray, "Alright"~Darius Rucker, "The Walker"~Fitz & The Tantrums, "Can't Hold Us"~Macklemore & Ryan Lewis, "Don't Stop Me Now"~Queen, "This Close"~Flyleaf, "Love Bites [So Do I]"~Halestorm, "Whistle"~Flo Rida, "Talk Dirty"~Jason Derulo and so many more.  

I think I got most of the questions, I hope all my fellow MdDSers get a chance to feel what I have felt these last few days.  I'm grateful for what I've gotten to experience and I hope it stays this way.  
Thank you for all the support.  I will continue to write about my experiences and how things will continue day-to-day.
~Sara

"I'm on Top of the World"~Imagine Dragons

MY VERY FIRST DAY COMPLETELY 100% SYMPTOM FREE!!!!!
****hands thrown up in the air and screaming to the world****

Wow!  So last night I had another night of not being able to sleep.  I finally fell asleep at 5:30 this morning and then had to wake back up at 7 to take the hubby to work.  Got home and got the kiddos ready for school and sent them on their way and then I crashed on the couch.  I slept until 1.  I went to stand up from the couch, preparing myself to fall back down since this is the norm for me after taking naps during the day. 
I stand up and I feel nothing! Absolutely nothing!  I walked around and it was the strangest feeling in the world to not rock.  I decided to jump in the shower (usually a good trigger for me), but again nothing!  I was able to stay in longer than I usually do and still nothing!  I got dressed and moved all around my house with no symptoms.  I was home alone and I felt like running out of my house screaming how good I felt.  Instead, I had my own little dance party in my house.  I blared good music and busted a move and I felt amazing!  Wait...amazing doesn't even come close to how I feel.
I picked up my kids from school, came home, and started playing with my kids.  I rolled all over the floor with them singing songs, dancing to music with them and tickling them.  Went to pick up the hubby from work and here I sit.  7pm and still no symptoms.  This is incredible! 
It is so strange not to be rocking all over the place.  To be able to walk around and feel like a normal person!  Going on 2 years with MdDS and here I am throwing my own little party. 
I pray it stays, but guarded and prepared that it will all come back.  I'm not getting my hopes up but I am totally going to keep partying it up tonight with my kids & hubby.  I'm going to celebrate this amazing day.  I'm totally on top of the world! 

"Safe and Sound"~Captial Cities

I've come to realize that keeping up with day-to-day life and a blog has become a lot harder for me, but I'm trying to make the effort.

I wouldn't say I've hit a remission because I have not gone an entire week without symptoms, but I'm doing much better than I was this time last year.  I'm trying very hard to stay positive with it all.  Today was my first day that I went with pretty much ZERO symptoms!  It was such an odd feeling to feel my old self.  It was amazing, but there was a small part of me just waiting to be prepared for a wave to come through.  I would have a balance issue here and there, but for the most part there was no rocking or swaying or bobbing.  No pain in my ears, no pressure in my head.  I have felt so good today and yesterday.  

The last few weeks have been extremely stressful personally.  We have had a lot going on with family issues that we have had to work through, but at this point, everything is out of our hands.  I try to stay positive.  When my view starts to turn negative, I start jamming out to music.  Music has been my comfort for as long as I can remember, but lately it has been my go-to.  I've jumped from up-beat pop, to rock, to hip-hop and even country.  I've mixed up my playlist and its been awesome to find new music and old favorites. 

I've decided that I am going to try to find some outdoor venues that are having free concerts in the area to go hear some bands live.  I made it to a few last year and it was awesome.  

Everyday, I'm pushing harder to become better.  I have my set backs and I've learn to accept those.  I know how hard I can push myself and when I need to just be okay with the way things are.  Its all I can do.  I have learned that this is the way things are and this is the way I am.  

I'm feeling better about myself.  Don't get me wrong, I still have my frustrating days, but who doesn't?  And mine just come with a little wave riding.  I just need to get back on my surfboard and ride along whichever way the waves take me!

"Human"~Christina Perri

I started writing this a little while ago, and never published it....so I added a little to it, and here it is:

"I can do it, I can do it, I'll get through it, But I'm only human, And I bleed when I fall down, I'm only human, And I crash and I break down"

Its been a road of ups and downs since the last I wrote.  I have great weeks, then bad ones.  The thing about having MdDS is that you get your hopes up on the good days and feel like someone has literally shoved you down on the bad.  Its been an inner struggle for me not to get frustrated about it all.  
On top of dealing with the day-to-day rocking, you have the rest of your life you have to leave.  It doesn't stop when the MdDS acts up.  For me, I'm a wife, a mother, a sister, daughter, co-worker, Girl Scout leader, a friend, the list goes on and on.  I hate when I feel like I'm failing in any of the above mentioned areas.  I do the best I can and push as hard as I can, but sometimes I still cannot do what I feel needs to be done.  I've talked about my great support system before, and its true how wonderful the people around me are.  I'm lucky to have the people around me to help, but sometimes you just want the old you back to be able to do it all like before.  
I have remind myself all the time that I am only human, that I'm only one person and I have this impending cloud that can strike me down at any moment.  I stay positive and I push forward, but sometimes you just get tired of pushing.  
For me I struggle with this on a daily basis.  I can ignore some of the symptoms when they aren't too bad.  I can pretend that my ears and head aren't hurting, that the world is not moving so much.  Then there are the days that you can't ignore it and you have to deal with that pain, the pressure, the feeling of being a failure.  I breakdown on my own mostly nowadays.  I try not to drag down those around me.  
And the stress of day-to-day life makes the symptoms so much worse.  Its like this repetitive circle that is never ending and trying to get out of that loop is sometimes the biggest battle, the highest hurdle, the steepest mountain to climb.   

I'm heading into my second year anniversary (come May) with having MdDS.  I've learned so much about  myself that I didn't know before.  Some people may have seen in me all along, but I never saw it.  This disorder has given me a strength that I didn't believe existed inside of myself.  But again, I'm human and I don't feel even this new found strength everyday.  I want to feel proud of myself again.  I need to find more faith in myself that I can conquer everything that is put in front of me.  
I am proud of who I've become over the years.  I am happy with what God has given me.  My family is strong, my friends are supportive, my bosses are understanding.  My life (minus this MdDS crap) is fulfilling.   I guess, no matter how tired I am, I need to keep pushing forward and hope that I will eventually break through the tough days.