"This Is War"~30 Seconds to Mars

MdDS medications are no fun.  I've decided.  Its just not worth it at this point.  I've tried a hand full of my own, and hated every minute of taking them.  When you take them, you may get some relief of the symptoms, but once the side effects just aren't worth it.  
Every day there are tons of posts in the support groups about the meds we are given.  The side effects to most of them are so crazy that if I haven't already tried it, then I'm going to. There are meds that I've heard of through these groups, that when I approached my doctor about them, he said he wouldn't even try it because he knows that it would be bad for me.  It doesn't help me that my system does accept meds well anyway, but it gets pretty bad with certain drugs.  
So, this is where we are stuck.  You rock, sway, shift.  Almost the feeling of being drunk.  You feel sick, and some days, the nausea is worse than any morning sickness I've ever had with either of my two pregnancies.  You can't concentrate.  Its like having ADD or Alzheimers, you forget things very easily.  When you walk, its like one minute your leg is there, the next its gone.   You can't walk straight, unless, for me I've learned to concentrate really hard and can master this if all I think about is walking.  You are exhausted, but you battle insomnia, which of course makes the symptoms worse.  And lets not even get into ear pressure or headaches, they will literally blow your mind.  
The problem with most of the medications is that it takes away one or some of the symptoms, but makes the other symptoms worse or brings on new ones.  So what do you do?  Pick the one that is the worst?  For me the insomnia is killer, the nausea, the headaches.  I can't take sleep aids, they make me groggy in the morning, so I stumble more.   TI take Meclizine for the nausea, but it doesn't touch the really bad days, only Phenergan does and it knocks me out, which again, groggy when I wake.  I've also tried natural remedies thinking, no side effects, so I've tried stuff like different ways to eat, drink, smash ginger, etc.  Same with the headaches.  
What's a girl/guy to do?
Well for me, I only take my meds when I absolutely have to, for instance, bad nausea days I will make sure I take my Meclizine the day of and a couple days after.  For the insomnia, even if I'm not sleeping, I'm resting.  I take it easy.  I try not to push too hard if it is at all possible.  It doesn't replace sleep, but it helps a little.   I drink lots of water.  This seems to help keep my head clear and I don't feel like I'm dragging.  
I did do vestibular rehab for a little bit.  Even though it didn't take symptoms away, it helped me learn how to walk somewhat normal, it strengthened my relflexes for when I would start to fall.  A lot of the exercises did not work for me, but they did help a little bit, and at this point I'll take a little bit any day.
My point to all this?  This is how frustrating MdDS can be.  You not only have to deal with the symptoms of it all, but the meds as well, the exercises.  You are a perpetual guinea pig for doctors and researchers because this all is so unknown.  But if being a guinea pig, is what must be done to come up with answers, than by all means, bring it on!  One day, I hope that something breaks a door down and we can treat this properly, without adding more issues to the already existing ones.  Some one had to be a guinea pig for cancer to figure out that chemo works.  Someone had to test out pain meds to find out that the pain goes away.  Someone had to try out birth control to see if it actually worked (glad I wasn't part of that group, but thank you ladies for what you did...haha).  I was part of a research group that tried Imitrex on minors with migraines because at the time there wasn't a med available for children who suffered...there is now.  
I'll do what needs to be done to try and get rid of MdDS for good.  I'll keep working on my exercises.  If doc wants to try something new, I will try it.  If it doesn't work, I'll stop.  I try not to get my hopes up anymore when he does suggest something, but that's hard sometimes.  I'm at least fortunate that I have a doctor in my area that knows what MdDS is, and that says a lot for me.
Its a battle that we will continue to fight.  A war again MdDS.  The Red Pill or the Blue Pill?

   

"Sound of Music"~Julie Andrews from 'Sound of Music' soundtrack

I've been on a roll with posting.  The being up late at night has helped with that, it gives me something to do. 
I had a request of what my playlist looks like and what items I use to listen to my music.  As you all know, music is a huge part of me.  With my MdDS it gives me something else to focus on besides the floor moving and shifting.  It also helps with anxiety in large crowds of people.  It keeps me calm.
 So here we go:

So first, the equipment I use.  So I have my cell phone, mine is a Droid HTC One VX, my Nook Tablet from Barnes and Noble, and my computer.  The one pictured is the newest addition to our family, but I have another that is hooked to our tv so I can enlarge print while working online and writing.  I can also play music through the tv. 
I also use ear buddies that fit inside the ear.  I have looked everywhere for different ear pieces that work for me.  This was the hardest because my ears are sensitive with the MdDS.  We do have a set of large noise cancelling headphones that I love (not pictured).  They are made by Sony and are very comfortable, but they are not very portable.  I had the earbuds that I come with the IPhone, but they are hard, and only sit right inside the ear.  The way the vibrations came through bothered my inner ear.  These earbuds fit inside the ear canal.  The ear pieces are soft and can be replaced easily if need be.  I actually have two different sizes on mine because of the comfort aspects of how they fit in my ears. 
I use Rhapsody for music.  I use Pandora if I'm home or somewhere with free wifi, but I don't like using up my data plan for it.  I pay a monthly fee and have unlimited downloads of music.  This is one of the few items that we pay for each month that is not a household bill, but we keep it because it helps keep me sane! haha.  With Rhapsody I make playlists that I can download onto my Nook and can listen to it without using any wifi.  This helps in places like at the hockey games, when we go to Busch Gardens, etc.  Also with Rhapsody i have access to my entire library on each device.

Which leads me to my current music choices.  As you've noticed with my titles I have an eclectic taste in music, so here we go, in no particular order:
1. "Watch Over Me"~Hanson
2. "Cruise (remix)"~Florida Georgia Line ft. Nelly
3.  "Locked Out of Heaven"~Bruno Mars
4.  "Same Love"~Macklemore ft. Mary Lambert
5.  "Thrift Shop"~Macklemore ft. Wanz
6.  "Your Touch"~Blake Lewis
7.  "Trouble's Gonna Go"~Skye Zentz
8.  "Titanium"~David Guetta ft. Sia
9.  "I Knew You Were Trouble"~Taylor Swift
10. "She's Country"~Jason Aldean
11.  "Sweet Thing"~Keith Urban
12. "Closer"~Tegan and Sara
13. "This Is War"~30 Seconds to Mars
14. "Hold On"~Alabama Shakes
15. "Airplanes"~B.O.B. ft. Eminem & Hayley Williams
16.  "Rope"~Foo Fighters
17.  "Stubborn Love"~The Lumineers
18.  "Learning to Breathe"~Switchfoot
19.  "Blown Away"~Carrie Underwood
20.  "Remind Me"~Brad Paisley duet w/ Carrie Underwood

My playlist tends to change daily, but these are the songs that are on repeat right now.  My playlist is actually a lot longer, but I figured I'd stop at 20 songs. 
My music is with me everywhere I go.  Its kind of like my invisible cloak.  It helps me to concentrate on the necessary details of life, like walking straight, staying calm, and moving forward. 

"Don't You Forget About Me"~Simple Minds

This post is inspired by a young woman who I've known since she was 2.  I used to babysit her and now she takes care of my kids.  Lately she has posted a few things up on her facebook that make me so proud.  Lessons that it took me awhile to learn, she has seemed to learn them her junior and senior year of high school.  As a young woman in today's society, she has a good head on her shoulders.  She is so intelligent.  She may make mistakes her and there, but that's allowed as you grow.  She's had her heartbroken, not only by boys, but my friends as well.  She doesn't let this break her though, she becomes stronger.  She accepts herself for who she is, for who God made her to be.  
As a teen you have your insecurities, and in today's world we unfortunately have bullies in this world who want to put you down and make those insecurities worse.  They make you feel worse.  But does she let this get her down, no she doesn't.  She retaliates by posting a handwritten letter of how she won't let anyone affect her judgement of her own self worth.  Amazing.
She's had to learn already that there are people in this world that are here for the here-and-now, some will hang around for a little bit of time, and then there are those who are there for a lifetime.  She has her family, her extended family, and has a few of those lifetime friends.  She has an inner strength so strong.  I can't wait to see what she does with her future.

Friendships that you gain help you move through life each day. I learned how precious those relationships are when I hit college. It has been 16 years since I started high school.  During that time I had a lot of the here-and-now, the few that last awhile and a handful that have been around for the lifetime.   But what has been interesting is that some of those awhile-friends have come back into my life.  I've been able to reconnect, heal, move forward.  Some relationships have been ones that I really missed having in my life.  
I've learned that friendships are hard work just like any relationship.  Some of them you can't move on until you open old wounds.  You find that somethings were misunderstood, somethings were helpful, somethings were hurtful, yet you can heal and move forward.  You find support in those you didn't think you would.  They need time, nurturing, care.  
I've had some emotional conversations with some old friends.  Peeling back old layers to make new foundations.  You realize that if you really want the friendship, you will take that time.  You come back more honest, truthful, and trust that if your heart is in the right place and theirs is too then you can rebuild.

My heart has expanded these last few weeks.  To be so completely honest with a lot of different conversations.  Knowing that I don't have to hide, I can be just me.  If I'm not accepted that's okay, I have those lifetime friends.  But if I gain another lifer, well more power to me.  :-)    

"Livin' On The Edge"~Aerosmith

I think I'm a glutton for punishment.  My kids have been asking for a sleepover with their cousins.  I finally gave in and gave the okay for it.  I decided to have them all over at one time.  Tonight we'll have my two and three other cousins.  I figure though that I survived the other day, that a night won't be so bad.  I can handle it.  We'll have three boys under the age of 9 and two girls at age 5.  They definitely will keep each other busy that's for sure.  For one of the cousins, it will be his first sleepover.  He's 5 as well.  This should definitely be interesting.  Pizza for dinner it is.  My husband informed me that he'll see me tomorrow as he left for work this morning.  
So my biggest concern is the weather.  Its been rainy, actually it was icy yesterday (I know, where the heck is spring!)  Me and weather like this don't mix, but I've kept up my meds (which I hate, but you do what you have to do). 
It is definitely going to be interesting to see how everything goes.  I have a feeling that the insomnia that I've been dealing with might actually come in handy tonight.  
__
In other news....
I've been reading a lot of articles on MdDS.  There aren't that many, but they are out there.  I've come to the conclusion that this disorder is baffling on so many different levels. 
First of all, let me just say, I get so ticked when I read the headline "Person suffers from chronic 'seasickness'"  Its not seasickness! Just because most get this disorder from being on a cruise or boat, its not the only way.  After meeting people and talking with people, so many of us have come by this disorder in so many ways.  I personally was diagnosed after a car trip through mountains.  
Its not vertigo!  Yes, as far as the medical field goes, when they use coding for billing they have codes under vertigo. Vertigo is an umbrella diagnosis, MdDS falls under that umbrella.  
Symptoms for MdDS vary for just about every patient with the common ground of a rocking bobbing sensation, like you are on a boat.  It affects balance, coordination, and even concentration.  For me personally, my symptoms change almost daily.  You adjust to these symptoms.  You find your limits.  
I understand that when the news media reports on MdDS, they try to simplify it.  You can't.  Its not simple.  If it was simple, we would understand what exactly starts it, how to prevent it and how to fix it.  The news tries to understand it the best they can, just like anyone who doesn't have the disorder.  Don't get me wrong, I love that word is getting out.  It needs to be.  Its just sometimes when I'm reading the articles, I feel like the last line the author wants to right, "so that's it, this person just needs to get off the boat."
The more research that I do on the disorder, I'm finding that there are few doctors who have even heard of it, which is sad.  But even those doctors have different ways of going about treating it.  As I've said before, I hate meds.  I don't like taking them at all, and only do so when I absolutely have to.  I refuse to take any meds that are anti-depressants, because they alter my personality, and my personality is crazy enough as it is.  I'm not judging those who do, it works for you and that's so awesome, but I just can't do it.  My doc and I are stuck with what to do at this point, so I work on some different coordination exercises, and push for ways to figure out how to work around the symptoms.  
I rock.  And by that, I mean literally, I rock.  It makes me feel better.  I rock in chairs that don't.  I stand up and shift back and forth.  My family and friends have gotten used to it.  If it gets really bad they'll stop me.  What throws me off is when people start rocking with me.  
Its baffling, and I hope that one day we can find out what is the root cause of it all.  If we can get to that point then maybe we can figure out why we all have different symptoms, how to prevent it, and how to fix the problem.   

"Cruise (Remix)"~Florida Georgia Line ft. Nelly

So first, the song has nothing to do with the post, but i love this remix, so there. :-)  Second, I had to change the format again to the blog.   If it causes visual issues for anyone please let me know, I did okay with it, but I also do better with reading now.
AND THIRD......
I'm still alive this morning~WOO HOO! GOOOO ME!  At one point yesterday I had in my house my two kids, my niece, two cousins and three neighborhood kids.  Three 5 year olds, one 2 year old, a 7 and 8 year old, and two teens.  WOOO!
Honestly, it wasn't bad.  The kids mainly played outside all day.  Thank goodness for good weather.  We had a few minutes of where the noise level broke barriers, but it was under control.  I was even able to get Kiwi down for her nap for 2 whole hours!  
I thought I would be nice and take everyone for Slurpees at 7-11.  There is a store that is walking distance.  Everyone got a buddy and we walked together as a big crew.  It was a lot of fun.  We also had a good laugh at my expense.  As we walked out of store (so far only two kids out), a man was walking up with his daughter, I apologized that we were taking a few minutes to get out the door.  Our conversation went like this:
Me:  Sorry, I've got a crew with me. (the rest start flowing out the door)
Him:  Oh wow.  You do have a crew.  Are they ALL yours? Because you look good for that many!
Me:  Ummmmm, uhhhh.  No they aren't mine! HA!
My teenage cousin thought this whole situation was hysterical.  I'm sitting there thinking WTH man!  The teens are almost half my age.  There were at least four different races of kids.  Not to mention the three 5 year olds are only months apart in age.  Ok, so either I get around A LOT!  Or I decided to adopt the neighborhood....where's the child support?!  HA!  I got a great laugh out of it, and so did the teens and parents of the kids that I had.  I called my mom because it was so funny.  She said that that's how her mom used to be with them & their friends, and I remember my mom adopting many a cheerleader, and friend from school.  Everyone called her mom, heck they still do. 
By 6:30 everyone was picked up.  I didn't lose a shoe or coat or kid.  I still got dinner on the table by a reasonable hour.  
The unfortunate side, I thought running after everyone I would be able to sleep, but alas a low pressure system started coming in late at night which triggered a bout of insomnia.  The weird thing though is that I don't really feel it this morning.  I have a headache still from the system and my ears feel like they may explode, but other than that I'm doing pretty good with it.  May need to take a nap with my girl Kiwi this afternoon.  
Now, excuse me while I go listen to my new favorite song...

"My windows down, my seats back, my music up and we ride,
Her legs up on my dashboard, and that's just the way I like
Hey country girl this country boy likes everything about 'cha
Don't change a thing, no way, you stay the same, I gotcha
I like all that, all that, head to toe you all that
Tell old boy he can call back, send a text say fall back
Cause I can see you got a thing for the fast life,
So come on shorty let me show what the fast like"
~Cruise Remix ft. Nelly~Florida Georgia Line

"Kings and Queens"~30 Seconds to Mars

It is spring break around here in good ol' Hampton Roads.  All the kids in public school are out for the week.  This has brought on new challenges that I wasn't quiet ready for, but I'm pushing through the week.
Here's the challenge.  On a Monday or Tuesday, it is just me and Bug once Bubba is off to school.  Wednesday thru Friday, I add on Kiwi, my niece.  Throughout the week I might add a kid or two before and/or after school depending on who needs me to grab kids after school or send them off to school.  This is not a challenge for me.  I've gotten used to this routine.  
My son is old enough to get himself ready for school.  He knows how to get himself drinks and breakfast.  I help with the packing of lunch, but most days he buys.  My daughter can handle somethings on her own.  She's always been very independent and taught herself how to do a lot of things on her own because she hated asking for help.  Kiwi is 2, so she needs help which I am happy to give her.
So a normal week and I'm good to go...Spring break is a different story.
For instance, today I have my kids and Kiwi, plus two more cousins.  One of the cousins turns 14 this week, so he's actually considered extra hands, not so much me babysitting.  I just have to keep him alive and fed until his dad gets off work.  Haha.  
Dilemma, lots of kids means lots of running around and loud noise.  Good thing my entire upstairs is pretty much free rein for kids to play.  Two large rooms full of all kinds of toys to keep little people busy.  Also i have well over 100 movies for them to watch if the noise gets to be too much.  I'll just throw them all on the couch and make them sit.
Dilemma, can't drive.  And the closest park that my kids like to go to has been fenced off because they are working to replace all of the transfer power lines in our neighborhood.  Unfortunately a large set of lines go right by the park, so they fenced off the area.  We have a fairly quiet neighborhood for the kids to go outside to play, however, we have no sidewalks, so no riding bikes safely.  My kids have been here for the last two days, so they have become bored with sidewalk chalk, jump ropes and balls.  So....Pinterest here I come!  haha.  Time to find fun ideas to do with the kids.  
The helpful thing is that I do have the older cousin who doesn't mind hanging with 8 & 9 year olds.  He's willing to sit and play Pokemon cards, or take them out on his skateboard and let them coast.  Nap time for Kiwi might be a challenge getting everyone to chill out, but I think we can handle it.  I got this!
So its, 8:30 in the morning.  Two of the cousins have made it.  I have my two kids, and I'm waiting on the arrival of my little niece.  Fingers and toes are crossed.  Lots of prayers.  And if I survive, I'll be glad to write again soon.  

"It's Time"~Imagine Dragons

This weekend has gone by very quickly and so much has happened.  My baby girl turned 5, so we celebrated all day together as a family.  Seth's spring break started and shockingly my husband was able to get the day off from work.  We had my niece with us, so we all traveled together to go to Build A Bear (Lily received a gift certificate as a present for being the flower girl for my bestie's wedding).  We also hit up Barnes & Noble to get two books that Lily had been asking for.  Then while the hubby was switching out games at game stop with Seth, the girls and I headed to Bath & Body Works with my freebie coupon (love those things!).  Afterward we headed to Chuck E. Cheese.  Now, ever since being diagnosed with MdDS, being in big crowds (especially where a ton of kids are involved) and flashing lights and noises, I don't handle them so well.  So, hubby took all three kids around to play and when the toddler area cleared out, I was able to take my niece over to play so he could take the big kids to the bigger games.  We came home to a dinner of chicken nuggets, shells & cheese, strawberries and broccolli (Lily picked it out herself).  All-in-all a really good night.
Saturday came and went with a few errands to run and also to a hockey game.  Unfortunately a low pressure system started coming through about half way through the first period and I started to not feel great.  By the end of second period, we left.  The mix of the system and the large crowd, the loud noise and trying to concentrate on a small puck flying around a rink, just wasn't a good for me.
Sunday was Easter, and I was nervous.  I still had some residual yucky feelings, but I pulled through.  I refuse to let the MdDS controll my day-to-day, so if that means that I have to sit on a floor or a couch the entire time with my family, then so be it.  The good thing?  There were toddlers EVERYWHERE! And I was stuck on the floor with all of them!! I was so in my element!  If you know me, you know I love kids.  The toddler age is my favorite.  There are like little sponges and they are so funny.  I had a blast even though I wasn't 100%. 
We headed to my in-laws who have the most comfortable couch....side note...this couch is like a sleep trap!  If I'm not really careful and don't move every few minutes, I almost always crash on this couch.  I love it.  I didn't fall asleep on Sunday because I was catching up with my father-in-law and mother-in-law.  By the time we left there, I was definitely feeling some symptoms.  My hubby got me and the kids home safely, he tucked the kids into bed, and then made sure everything was good for me. 
Today I'm feeling so much better.   I pushed myself a little too much I think, but I got a lot done with the house that I had been slacking on for the past few weeks. 
On another note, at the end of last week I received a card.  At first I thought it was for Lily, but it was for me.  And it was a "Just thinking about you" card.  First off, I haven't received a card like this since I was in college.  It was awesome to get an actual card from someone I love dearly.  I call her my other momma.  She came into my life when I was in high school, and over time I've come to lean on her, depend on her, trust her.  I hadn't spoken with her in awhile and for her to send me that note, it just filled my heart.  To be honest, it has never crossed my mind to send anyone a note like that, but I think I'm going to put out a bigger effort.  I love to write.  I love to bring smiles to people.  What better way than with a note or a card, just to say hi? 
My new challenge....send a card out to someone each week.  I feel that it is very important to show those people in your life that are still around that you care.  With technology the way it is today, its so easy to just send a quick text or e-mail, plaster something on Twitter or Facebook, but an actual handwritten note is so much nicer.  Yes, this will be my new challenge.  It starts today.