"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!