"Somewhere Over the Rainbow/What a Wonderful World"~Israel Kamakawiwo'ole

Five years today I gave birth to a beautiful brown-eyed little girl.  Lily Elizabeth Ensley, my Lilybug, my bug, my buggy.  She was the perfect addition to my growing family.  We already had a wonderful son, but this little girl took a piece of my heart away the moment I laid eyes on her.  
I have a bond with my own mother that is unbreakable, and I knew that with my little girl I would have that same bond.  She looked just like her daddy and grandmother, a stubbornness like her grandfather, compassion like her Nonnie, and an inner strength that was inspiring.  
My husband knew from the moment I was pregnant that she was a girl.  He knew she was going to be his angel.  The idea of a father like my husband having this little girl would always bring a tear to my eyes.  The moment he held her for the first time, I knew we were in trouble.  Seeing the two of them together for the first time, you could feel that bond made immediately.  
Lily has pushed us as parents.  She's always been tough, she's always been a fighter, but she pulls this little girl act when she wants something.  She's a daddy's girl through and through, but she loves her momma.  As much as she loves her mom & dad, when grandma & granddad we don't exist.  
She has been the best friend my son could ask for.  She supports him in everything he does.  She looks up and admires him.  The love that they share reminds me of my love for my brother and sister.  A friend for life.
Everyday I watch this beautiful girl grow up.  She grows up too fast and that breaks my heart.  I know that one day I will have to let her go.  I've already had to start letting her explore and make mistakes. I have put my heart on the line and she pushes herself to become better.  
My mom always told me that being a mom is the greatest joy but the hardest job.  I never understood how much you depend on your faith as you watch your kids grow.  I've held my breath many times as I see her climb, run, jump.  She absorbs everything and wants to try anything you put in front of her.  She is fearless (unless her crazy brother talks her out of something).  
She's funny.  She has her aunt & uncle's witty sense of humor and her father's sarcasm.  She can make you laugh at a moment's notice, even when you are not in the mood to play around.  There have been many a moments when I want to be mad at her and I have to turn my back to laugh at what she has said.  
She has her mother's rhythm.  She loves music and loves to dance.  She sings songs at the top of her lungs.  She doesn't care who sings with her, she just loves her music. 
She is an animal lover.  She carries around this little pink stuffed animal poodle named Puppy.  Puppy has been around since she was six months old.  Puppy has had many surgeries, many body lifts, many back and neck surgeries.  As much as this puppy drives me crazy, I'm not sure who will miss it more when she stops carrying her around everywhere, me or her.  Puppy has become a staple for every trip we make.  There have been a few times where puppy has been misplaced and it has been a scary situation of what are we going to do  if we lost her permanently.  We've tried replacements, but they don't work.  Our cat Apollo has been around since she was six months as well.  She and Apollo are best of friends and even to this day you can catch them both laying almost on top of each other on the couch as she watches t.v. and he is taking a cat nap.  Its so sweet to watch them together.
I watch her grow.  She makes me proud.  She is one of my joys.  She is baby girl and always will be.  

 

"Musical Ride"~Hanson

This is my 60th post to date!  I started this blog to help cope with being diagnosed with MdDS, but it has turned into so much more than that for me. Its been an outlet, a release and has helped me to see so much more of myself.  I have spent the last few days going back and reading from the beginning.  So much as changed, so much has stayed the same.  It has helped me to find myself again at a time when I thought I was lost.  
Through this process many of you have been encouraging, helpful and supportive.  Whether you are a fellow MdDSer, a friend, family, a physician, or you know someone who has this disorder, your words have been an inspiration to me.  
I started this to help myself, but I've found that I help many.  Whether they suffer as I do, or with their own issues, or they are looking for understanding, somehow I've helped and that fills my heart.  I never thought I would be able to up keep the blog, but I've done it.  There have been spaces between posts due to bad timing, but I strive to write as much as I possibly can.  I do this to show that I can push through anything MdDS gives me and surpass my goals.  
My goals have become bigger.  I can walk normal for the most part.  I can cook meals again.  I can clean.  I can take a bubble bath.  I can take care of my kids and then some.  Now I move on to the harder aspects of life.  I want to drive again, to work again, to swim this summer.  I want to be able to look at the summer night sky and watch the meteor shower without falling over immediately.  Sounds silly I know, but these things are very daunting tasks at the moment.  And these are just a few of the tasks I want to get a handle on again.  I've learned to work around these tasks, but I want to be able to actually do them.  
I still rock while standing.  I still use walls to walk down hallways.  I move slow some days.  I have days that I can dance around a little bit, but I listen to music everyday.
My music has gotten me through a lot in life, and its appropriate that it does help me through my MdDS.  I've been able to use songs to show people how much I love them.  My family has laughed to songs as we all dance together in the car.  There are times of the day when I feel down and send a text to my sister with a line of the song and by the end of our conversation we have had our own duet of the song via our phones.  Music hits every part of my family.  It brings back memories to us.  It makes us laugh.  Some songs might hit our hearts hard and cry. 
My little niece comes to me and says "Oh yea yea Sawa" (Locked Out of Heaven~Bruno Mars).  My daughter comes and says "Play baby you're a firework" ("Firework"~Katie Perry).  My son knows all the words to "Party Rock" by LMFAO.  My husband has been listening to "Madness" by Muse and "Thrift Store" by Macklemore.  My sister and I have an entire choreographed dance to "MMMBop" by Hansen that we made up at little girls and still remember all the steps.  When we hear "What is Love" by Haddaway, my sister and I smoosh my mom and go all Night of the Roxbury on her.  My brother knows all the words to "Defying Gravity" from the Soundtrack of the Broadway show Wicked  which we have screamed driving down Croatan Hwy in Nags Head.  If I hear a Tom Petty Song, I am reminded of my friend Ed, "Stand Up" brings me back to my first talent show with my big sis Sarah, Tim McGraw and I'm thinking of Drea. I've used songs in replace of words that I couldn't express how I felt as I said good bye to good friends.  
I can't be in a car without music on, I can't be in an empty room quiet (unless I'm reading) so music has always kept me company.  I can't sing, but the way I sing songs you would think I didn't know that...haha.  I've always had my heart in music and to see my kids fall in love with it too makes me feel good. 
 Music teaches us so much, its cathartic and it helps with pain, encourages happiness, makes you feel stronger.  Its made me stronger everyday that I've had MdDS, and it will continue to help me push through and meet my goals to be symptom free.

"Rubber Ducky"~Ernie from Sesame Street

With MdDS comes challenges with water.  I've found this out in many ways.  Talking with fellow MdDS'ers, we all suffer different ways, but many of us have major issues with water.  For me, even looking at rivers, creeks, bodies of water, makes me feel nauseated.  I typically take showers now because I'm in and out quickly.  I use a shower chair on my bad days for extra support. 
I'm a beach goer.  At least I used to be.  I love the way the ocean comes and goes.  Always moving, always renewing itself.  I love to swim and board.  Last year that was out.  I tried to wade into the water and I was so off kilter that I just gave up.  Just looking at my grandfather's pool was difficult. 
I got over the fact that going into a body of water was just not happening for me last year.  But the most difficult thing for me to give up has been my relaxing bubble baths.  I know, for some this isn't huge-especially if you are a guy, but this has always been my escape.  After everyone goes to bed, I jump in the warm tub with my favorite bubble scent and a great book and just run away from the world. 
The first time I tried a bath with MdDS I literally lasted 5 minutes.  I cried.  I know, sappy, but you know what....I'm not a girly girl type, but dang it I'm a bubble bath girl! Haha.  No seriously, its not just because of the escape.  It helps with with other physically issues.  I suffer from migraines and the warm baths with ice packs on my neck help me.  I've had knee surgery and from 16 years of dance I suffer from low back pain a lot.  The baths help with all of this.
Since my first time, I've tried different things to get myself back in my tub.   I know this sounds totally unsafe, so I suggest if you try this, have someone with you in your home to help you. 
One of the issues I had was that my tub is surrounded by tile.  Tile to me moves.  The lines make me dizzy.  So I turned the lights off.  Easy enough, lines disappeared.  I tried lighting a candle near my sink to help with light, but the flickering of the candle in a dark room disoriented me.  I had to blow it out.  
My husband suggested filling the tub to the right height and then getting in.  Try to breath until the water settles and then don't move.  The water won't wave up to you and you can relax.  This helped.  A Lot!  The only time the water would shift is when I would adjust.
I have an old tub, and with that I slide on the bottom which started making waves too much.  (I don't like the little rubber duckies).  I went to Target and found this awesome pillow mat.  Its a mat that runs along where you back lays and then goes down the length of the tub.  It was $20 well spent.  I don't slide at all.  
I can't read normal books anymore...the spacing and font is too small for me to enjoy books anymore, but as previously written, my Nook is awesome.  I have the Nook tablet which lights up and gives me just enough light now to where I can get into the tub with little light and then get out okay.  
I take my cell phone!  My toilet is next to my tub.  I put my phone at a safe distance on the tank of the toilet so if I need my husband I can call or text him for help.  I must note that I carry my phone everywhere with me now due to times of black outs or severe dizziness.
We also have a vent in our bathroom for the heat.  I closed up the vent and I've learned to leave the bathroom door cracked because if it gets too hot and humid I get dizzy.  
Its taken a lot of trial and error with this.   I had to figure out what works and what doesn't.  There have been times where I've had to have my husband help me get out because I stayed too long or the water moved too much.  Between him and I, I have tried all different combinations of tricks.
So here are all of my steps:
Lay out bath mat and suction to bottom of tub.  Turn water on and fill tub.  Add bubbles when ready.  In the meantime get my towel, nook and cell phone.  When the water is ready, I turn off the lights and get in.  I watch my time.  I usually don't stay in longer than 30 minutes now.  When I start reading, I don't notice the water and I can enjoy my relaxation time.  
I hope this can help some people find some relief.  My goal this summer is to get in the pool and maybe even out in the ocean.  I want to swim again.  It will take time and patience, but I'm going to do my best to get there.   

"All I Ever Needed"~Paul McDonald & Nikki Reed

Wow, long time since I posted.  Its been a hectic couple of weeks. 
My girl got married on Saturday which meant lots of prep work and juggling of the masses to get ready for a car trip. The weekend came together even with a few hitches, but she said 'I do' and he said 'I do' and so I would say it was all a success :-)
I'm not sure if other MdDS'ers feel this way, but here's me...So I feel fine in the car, but as soon as I step out its insanity.  I feel like the ground is in the air.  I feel light headed and exhausted.  We drove up and the drive was fine, but we stopped for lunch and I felt queezy the whole time.  Then when we got to DC (which is a 3 1/2 hour drive) I ended up falling asleep for a few hours.  The drive back I slept most of the way home and then ended up sleeping all night and into most of Monday.  I used to hate being a passenger in a car for long trips but it wasn't so bad.  Its the aftermath that is hard.
I have been planning this trip for awhile.  I've been working myself up to it so that I could be prepared as possible.  I didn't plan the tummy bug that me, my son & daughter all caught, which didn't help the symptoms much...actually it made them much worse and made me exhausted.  But its my best friend's wedding.  I'm not missing this.  My husband and I prepared for me not feeling 100% after we got back.  We knew it would take me a few days to recover completely.  I've been in an emotional upheaval for the last few days.  Thanks to my husband and our pillow talk last night, he made me realize that we planned for this.  We knew I wouldn't feel my best after the trip, we didn't take into account the tummy bug which has probably made things worse than usual.  And as he said, yes I don't feel right, but it will get better, it always does.  He also pointed out that even though I'm not 100%, I've still gotten Seth off to school all week and picked him up, I was able to get him to his appointment to get his cast off, and I've been able to take care of my daughter and niece all on  my own.  We have back up plans for a reason and this is why.  So I've played on the floor and couch this week with my girls, at least they are getting attention.  We've watched a ton a movies and had lots of cuddle time, and thats okay.  Everyone's fed, everyone's had their naps who needed naps, everyone is clean.  Job success.
So on to other things...
I started this blog as an outlet for me coping with MdDS.  I try to stay as positive as I can, but let's face it, this disorder is frustrating, not only to us but to doctors, family, friends.  Its frustrating to each person for different reasons.  Its hard to stay positive all the time.  I've written about how I try to bring positive aspects in everyday, but its difficult.  We are all human, and every human has a bad day.  It doesn't mean you are a bad person, it just means that you are having a tough day.  For me, my tough days are hard because I'm an emotional person.  I wear my heart on my sleeve.  I care too hard and too deep.  My feelings get hurt too easily.  I have tried not letting things get to me, but on a bad day, things just hurt me worse than usual. 
Its even worse when you are judged for your bad days.  For people to just assume things about you just because you have a bad day.  A bad day can consist of many things, lately by bad days I mean bad MdDS days.  Bad MdDS days consist of higher level symptoms.  But its how you cope with these bad days that makes you the person you are.  You feel your inner strength pull through eventually.  For me my inner strength comes a lot from my husband (who I've written a lot about)  who pushes my inner super woman out of her cave.
So to give you some perspective into my world.  MdDS has a scale that you follow your symptoms.  The scale runs from 0-10 check it here  This scale is important for all those involved.  It helps you to communicate how you are feeling on daily even weekly basis.  For me a bad hits around 5-6, but I can usually push through.  Its when I get to 7 and above that its hard, for me at least.  I typically experience days at a 5 or below.  I never get to a 0. 
But even sitting at a 5-6, I have come to realize that I can push through and be mom, wife, friend that I need to be.  It helps to have my support system with family and friends, but it also helps with having the support groups through MdDS.  Those who are going through similar issues that I am.   We all take each day we are given and move the best way we can even if it is on a tsunami wave.
I know that for me, I push through those 5-6 days, but sometimes you just get tired of fighting.  Some days you just feel like you need to quit and give up, but you can't.  You take on the burden of the disorder and keep moving forward.  You hope that it doesn't crush you.  You pray that those around will eventually understand and give you the space you need or the comforting shoulder to lean. 
So today, I'm standing up tall.  I'm dusting off the bad vibes and moving forward.  I'm going to take it easy today and not stress about it.  I'm going to take the time I need to get better and get past this week.  I'm going to go play with my daughter and niece and laugh because that's what I need right now. 

"Island in the Sun"~Weezer

INSOMNIA NIGHT, SO I WRITE....
I've had a pretty decent day today.  Compared to yesterday, today has been a relief.  I feel like writing, and so I will.
I sat up tonight at first listening to music to try to get my brain to just calm.  It didn't work.  It made me want to write...oh well.  
I started this blog with the intentions of writing about my trip along life with MdDS.  Its been a very long road, going on 10 months.  10 very long months.  The one thing that goes along with each post is a song.  A song that is stuck in my head, a song that means something to me, or goes along with the post that I'm writing about.  
Tonight I was listening to old songs on shuffle.  Music means more to me than most people know.  15 years of dance gave me that appreciation for music.  My beautiful dance teacher, Mrs. Eva May Morris Gregory (rest her soul) was a beautiful dancer.  She gave faith to all of her students that no matter your age, your size, your abilities, you can always dance.  She opened our eyes to music we would typically not listen to as teenagers.  I took private lessons with her for 3 years.  The last being a year that was very tough on me and my family.  She stuck by my side, she was in my corner, and she pushed me above all of my limits, physically and emotionally.  She was the mentor I needed at the time.  For an hour each week, she had my attention devoted solely to my dance, her craft, our music.  We worked together mixing different songs to find ones that worked for both of us.  She showed me to just lay in the middle of my room on the floor, blast music out and just feel it.  It was my therapy...better than any that my mom could have paid for at the time.  I fell so hard that year, my senior year, but she helped pull me out, encouraged me to move on to college.  She pushed me to spread my wings even though I was terrified.  I cried at my last lesson, I cried at my last recital, and I cried when I had to say "Until next time" last year.  
But I still carry on that love of music.  There are songs that flash me back to a moment in time. A moment in time that was just a flicker on my lifetime, or one that changed my entire course.  I love how music can just do that to you.  Pull you to that moment that you may have forgotten.  
"Island in The Sun" was a song that was being played in the courtyard of my dorm the first day that I was at VCU.  I met a friend and followed him to his room to meet his roommates.  Ron was a good friend, as well has his roommate Mike, and his suitemates Eric & Garland.  Through Eric I met Drea.  She and I became inseparable.  Ron, Eric, G, and Drea hung out a lot our freshman year.  Usually where you would find one you would find five or six of us.  Its the way it was, and it was a blast.  That one song brought that memory along with a bunch of others.  We had many dinners where we would all meet at Hibbs, or when the guys would meet us girls at our late night classes to walk us back so we wouldn't have to walk alone.  We snuck into Hollywood Cemetary and almost got caught on Halloween night, which led to Drea almost having an asthma attack.  Drea and I moved to a different dorm our second year, but we would invite all the guys for our dysfunctional family dinners.  I found most of these guys on facebook, Drea the only one I've kept in contact with the most, but I hope that I can meet up with guys soon with our families.  We've all grown, some married, some with kids.  Its neat to see how everyone turned out.
"A Certain Shade of Green" by Incubus came on next and I started to remember high school.  A song that we blared driving down Shore Drive to 89th street with Noah & Matt.  Many trips with these two to go boarding and acting crazy at the oceanfront.  To be so carefree again as I was at 16 & 17.  Remembering larger groups of us meeting down there, a caravan of cars following and racing each other.  Thinking back now, the racing on Shore Drive was probably a stupid move, but you don't think about that when you are young...but fun it was.  Up until last year, I would still go down to 89th.  I take my kids to enjoy the beach.  The whole MdDS thing took that away a little, but my goal this year is to work on being back on the beach.  My favorite of all places to be.
And don't get me started on "Canned Heat"~by Jamiroquai...I jump to NSA and dancing at the copy machine for Shay & Di doing  my best impression of Napolean Dynomite.  To think about it now there are a ton of songs that bring me back to NSA.  Too many to list.  "Thriller"~by Michael Jackson brings me to GEICO with the rest of the Mobsters in training. 
Music defines a lot of times in my life.  Like photographs help people remember, I use music.  There are songs that get stuck in my head out of no where, and I just remember like it was yesterday.  There are songs that I hear and can still remember the choreography I was taught for it.  It has brought me through some really great times, and some really horrible ones.  I'm glad I have all my memories, it reminds me of who I've become.  It makes me miss those connections I used to have, but I've come to realize that those who were meant to stay, have stayed, those that were meant to return have returned, and those who have left, are gone and tucked away into a memory of a song.         

"Marry Me"~Bruno Mars

Time to play catch up....
February 23rd....The Girl Scout cookie truck came in with all of the cookies Lily has been selling.  She sorted and packed everyone's cookies and we have been doing deliveries of said cookies literally all over town (the main reason of me not writing).  Living in Norfolk and having cookie orders literally in every surrounding city and then some and not being able to drive myself made this task a challenge, but as of today I have delivered all but one person's cookies.  (I'm still taking orders, but those that did order have been delivered.....whew!)
March 2nd....Me & the hubby went out to celebrate our anniversary (which will be on the 5th)  Dinner & a Movie...such a wonderful relaxing night.  
March 3rd...Friends came down from Richmond.  Let me just stop here and say that Drea & JJ are amazing people.  Drea & I were dormmates, soon to be roommates and sorority sisters (but even before the sorority we were sisters by adoption according to our parents :-D)  We had our family dinner as usual and Drea & JJ  joined us (poor JJ....Drea knows my family, JJ however was shoved into one of the most craziest of dinners)  
March 5th came and went this year, and I was hoping that I could write this then, but I was stuck on the couch due to the major storms that came through.  So I'm writing it now.  March 5th, 2004 is the date that Josh & I started dating.  March 5th, 2006 is the date Josh asked me to be his wife.  March 5th, 2013 we celebrated 9 years of being together.  People didn't believe us when we said we fell in love and knew we were for each other, but we knew.  We knew we were each other's match.  He and I have different personalities, but we are the same just enough to make us work.  We always say that we are a Ying Yang.  We knew from the beginning that no matter what came our way, we were going to be there for each other.  We have loved each other more and more each day.  We celebrate our wedding anniversary, sure, but we celebrate March 5th as the start of it all.
We met up at VCU, I was a student, he was a friend of a friend.  We both traveled between Richmond & Portsmouth to spend time with each other.  We made our time apart as best as we could.  We worked hard at our relationship.  Always honest, even if it upset the other person, it made us stronger.  We faced multiple challenges, but we've always made it out holding each other's hands, pushing forward.  
Happy Anniversary to my love :-)
March 6th came with a vengence this year.   This major storm came through the east coast and knocked me on my tail.  It was one of my worse symptom days, but I got through it.  I have wonderful awesome neighbors who took my kid to school for me.  I had my daughter and beautiful niece Kiwi all day.  We made it a couch day by watching movies, having yummy snacks and playing games.  My awesome mom and husband brought food for everyone since I was in no way capable of cooking dinner.  After everyone went to bed, I took some meds to make me sleep.  I needed sleep desperately and most of my MdDS medicine doesn't help with that so I skipped on those meds and went straight for the sleep aids.
March 7th (today) I'm feeling better.  The sun is shining and the weather is nice out.  The pressure system has moved out and I feel somewhat normal today.  Still walking a little bit drunk like, but I'm doing good so far.
Somehow through all of these crazy weeks I've been able to read.  I've been working on my reading which can be hard, especially on bad days.  I used to love reading books, but I can't read normal books anymore due to everything moving.  My Nook however, is awesome.  I've been able to adjust the settings to help me out with being able to read for periods of time.  I've had people mention to me before that maybe I should write a book, maybe one for kids?  I really love to write and I'm thinking I might start thinking of different books to write.  What I could write about?  I think it would be fun to do.  
So that's my catch up...more later.