"The River"~Garth Brooks

So today I kicked back and relaxed.  I slept for most of the day, which makes me wonder if I'll be able to sleep tonight.  It was interesting because I typically am not one to sleep during the day.  I guess that is what bouts of insomnia will do to you. 

The stranger thing that happened today?  I was messing with my Nook Tablet to fix it for my kids.  My husband bought me it for my birthday in June, but I personally haven't been able to use it to read due to MdDS.  Its made me sick to read, which I hate because I love to read, and not only that but my favorite authors all released new books this summer.  Anyway...back to fixing it...I started messing with the settings of the Nook.  Now the Nook is very bright, which is one of the reasons I wanted it so that I could read at night without disturbing my husband, however now its too bright.  I opened one of my books.  I changed the font to one that spaces words out more, changed the line spacing, made the font a little larger, changed the background color to gray, and then brought the brightness down a ton.  I sat and read 5 pages in a row without having to stop.  It was amazing!  Now granted for me reading 5 pages is nothing.  I'm one to be able to read an entire book in less than a day, however I broke up my reading in between my naps today.  I ended up getting through about 1/3 of my book.  I was so excited. 

I woke up to horrible symptoms as I was laying in bed waking up, but I got my husband pillow (the pillows with the arms on them that you lean back on...thanks honey) behind me on my couch, pulled up my snuggie (yep...hubby got me that too) and would read, then sleep.  After about my 3rd 30 minute power nap I was starting to feel so much better.  I even was able to make dinner tonight,which I thought it would be cereal & sandwich kind of night. 

But to be able to read just gives me that much more feeling of me back.  Reading was the hardest thing for me to let go, and I've been working so hard at being able to do it.  Even typing my blog tonight is easier for some reason.  Usually I have to take breaks, but not today.  I've been here typing this whole time. 

So, downside to power-napping all day?  1. I'm not tired now.  2.  Dog made a HUGE mess in the kitchen. 3. Kids loaded me with toys while I was napping so I woke up scared out of my mind from a stuffed animal 2 inches from my face!  4.  I don't like sleeping when the kids are awake.  Granted I have wonderful kids who don't get themselves into too much trouble most of the time, but its still not something I want to make a habit.

On another note, I've decided to take this all in stride.  I've finally been able to accept that this is who I am now.  Its not going to change, and if by some miracle it does I'll accept that too.  God has put me on this path to better myself.  So far I've become more vocal about my needs.  I've become stronger and more accepting of life's challenges.  I've become more inventive in finding new ways to move on with life.  I can't work, so I'll teach my daughter preschool at home.  I will be able to research healthy meals for my family and lunches for Seth to take to school.  I've become closer to my friends...mainly because they check up on me more often now (which I love guys, really, so don't stop calling me hahaha).  My husband have become closer.  We are more communicative because he's only face to face for so many hours each day.  We have had to figure out new ways to show our love, and I love that.  I've grown as a mom.  I've finally realized that I'm doing everything in my power to make my kids have a happy life, even if I am literally crawling up stairs to tuck them in, or sitting on floors to be able to reach new booboos instead of bending over and making myself dizzy.  I have panic attacks now, I cry a whole lot more than ever, but I also laugh more and I take more deep breaths.  I still hate it, I want it to go away, but I have to accept what hasn't changed for the last 3 months. 

I now need to be more understanding to those around me and remember that they have no clue with what I'm dealing with and they won't understand because they don't live it.  The biggest problem is that I don't "look" sick, so therefore I must not be sick.  But I am.  I have an idea.  My cousin said this and it gave me ideas but I'm not that mean....Let me put you on a tire swing, spin it as tight as it will go and then let it loose.  Once you become untangled get out of the swing and go cook a meal for 4 people.  You don't look sick, but I bet you are feeling it now.  The sad thing is that this isn't the only syndrome out there that is like this.  There are so many more diseases and syndromes like this that are accepting into society, but because of the rarity of it all, people just can't wrap their heads around it.  So I have to cope with them learning and understanding and maybe even arguing with me about it.  Believe me when I say that everything you are telling me to try, I've tried.  Every type of exercise, program, medicine, doctor, I've either looked into it or tried it.  I'm off to see a neurologist next week.  After that I'm giving myself a break.  No more rehab, no more meds (unless absolutely necessary), no more appointments.  There is no cure for this.  It goes away on its own.  So I'm going to let it do its thing.  Maybe if I stop doing everything I've been doing, and get all the meds out of my system, I can start fresh and go from there.  Let me rephrase that.  I'll go to the neurologist and let him try some new ideas out, but only ones that I'm 100% into trying out, other than that my new word will be "No," because frankly I'm tired of fighting and trying.  I want to give myself a break. 

"Curbside Prophet"~Jason Mraz

So I have another tip.  Its hard to do, but if you can focus enough and not get overwhelmed, it helps.  So due to me not being able to work, I decided to start couponing again.  I stopped awhile ago because I couldn't stay together with it.  Now I'm not becoming one of the extreme couponers, however I do need to save some money.  I've decided to start stocking up on items that we use on an almost daily basis.  I grabbed a friend who's been doing this for awhile for advice and help with reading ads.

So stores FREAK ME OUT.  I was never like this but since May, lets just add this to my list of things I needed to re-learn how to do.  The last few times I've gone into a store its taken me more than 4 hours to get through one grocery store.  This doesn't work when you have kids with you.  So I've come up with some ideas for shopping.

1.  I try to stick to one, maybe two stores I shop.  I have learned their layout, their store policies, and also (and I think more importantly) the staff that works the store.  The recognition and familiarity of people around me makes the outing that much easier.

2.  I stay away from stores during peak hours.  I also stay away from popular stores on weekends (i.e. Walmart, Target, etc.)  Its not that I have something against these stores, its just that the amount of product+the amount of people=panic attacks, dizziness, and eventually me just sitting in the middle of the aisle trying to refocus.

3.  I got a large binder and some baseball card sleeves.  I alphabetized my coupons by type (i.e. air fresheners, baking, cleaners, condiments, etc.  I can see every coupon I have while going through the store.  Now you may not want to alphabetize, but put them in the order the items show up in your own grocery store.  So organizing a book like this took me a few weeks to get it like I wanted it, but now its easy and I know exactly where everything is.  Its a really good feeling to know I can finally remember where I put something.

4.  I make a very neat list and compare the ads with coupons I have.  I pull the coupons I'm going to use and also put a "c" next to the items on my list so I know I have a coupon.  This has me checking the prices to make sure I read them correctly as well as remember to use the coupon at the end of the trip.  My list keeps me on track as to what I need, no so much what I want.  

5.  Don't get frustrated.  Just breathe.  If it becomes too much, don't hesitate to just stop, buy what you have and go home for awhile.  I've put stuff right back on a shelf and walked out because I became too overwhelmed.

Now, I will state that I'm not a professional, nor do I feel like I've gotten this routine down pat.  I've just begun the coupons, however the rest of the tips I've done since this has started.  If I have to go somewhere I'm not familiar, I take my earbuds and listen to music.  I take a person with me so I can hold onto someone if need be.  Today was my first big shopping with my coupon book all laid out and I finished our grocery shopping in an hour and a half.  Now I know this is a long time, but it was my first time trying out this new system.  I found things I need to work on and what I can do better next time.  I'm determined to only have to be in a grocery store for no more than an hour.  

Also surprisingly, working with coupons and my list, and checking over store prices kept me so focused that I didn't even really notice anything else going on minus a few moments with my kids.  I did go to the store at 8:30 in the evening so the store was pretty much empty, but it worked for me.  I was relaxed. 

I did two transactions (the store's policy will only double 20 coupons per transaction).  I had a total of 49% in savings.  It would have been less had I not needed to buy meat and a few other items that we just picked up because it looked yummy!  (I really need to get out of that habit! haha)  Most of the items I picked up today will be for my son & husband's lunches for next week.  I'll work on dinners this week and come up with that list for next week.  Wow, what an amazing feeling.

"What Would You Say"~Dave Matthew's Band

Today I had a lot of appointments to keep.  I had the wonderful pleasure of watching my 1 year old niece for a few hours so her mom could run an errand.  Keeleigh is a very smart one year old who can put a smile on anyone's face.  She loves to read, but MdDS doesn't like for me to read.  Thank goodness each of her pages consist of 3-5 words per page, and any book with longer verses I had her read those to me...haha...

When she was tired of reading we played "Go, go, go" which consists of her running from the living room into the kitchen and back and me clapping "YEAH!" hahaha... Bring on NAP TIME!!! Being a mom of a 4 & 7 year old, how I miss NAP TIME!!! hahaha...the best hour of the day!

After that it was time to get Seth for his check up...he's doing awesome (had no doubts), I just have to remember that he needs to get his eyes checked next month--which I proceeded to write on every calendar I could get my hands on.  While sitting there talking to his doctor, I had mentioned the MdDS with her (she's been my son's physician since we brought him home from the hospital).  She says "Oh, wow.  That must be miserable.  I've heard of people having that, but didn't know that it had a name!  I'll have to check it out."  The more we talked, she became intrigued in all that I've tried.  I told her that its crazy how it all happened now, but I'm going to try to take it as a blessing in a horrible disguise.  I've decided I'm going to work with my daughter and teach her preschool at home.  I've also mastered walking to my son's school so I'll be able to walk him to and from school each day (at least that is my goal, but I do have back up plans in place).  I'm also working on getting us on an awesome budget to be able to start saving money.  Since I'm home now, and have mastered some of my basic cooking skills, I can make more homemade meals.  I've also learned foods that I can freeze so now I make double amounts so I can freeze some for days that I don't feel up to cooking meals.  (If you are interested in some of these easy meals, let me know.  I'll be glad to pass on some that I've learned).

Tomorrow ADT is coming to the house bright and early to set up my smartphone so I can turn my alarm on & off through my phone so that way I don't have to try to run through the house to turn it on or off and rush to get out the door.  I also have a friend coming over to help me get better organized for grocery stores since this still seems to be one of my challenges.  I spend way too much time in the stores, so now I'm going to be better prepared.  

I'm taking each day in stride.  I've ended my day at a 7 when it started at a 4.  I had a lot of traveling today and cleaning that needed to get done from the vacation.  Plus a few other stresses that I wasn't expecting, so tomorrow will be a new day to try to learn more.  

"Love Will Always Win"~Garth Brooks & Trisha Yearwood

So I'm going to lay this all out.  I know that I'm not the only one who has these troubles.  I know most married couples do, however, with MdDS it makes it so much worse.  I swear this syndrome tries to test even the strongest of relationships.  

Now before I go any further, let me please say that my husband is a wonderfully strong, supportive, loving, understanding man.  Josh and I have been together for over 8 years, and next month will be our 5th wedding anniversary.  We have had our trials and tribulations, but we've made it through and come out stronger and love each other more when its all said done.  With that said, these last 3 months have been the hardest months.  

Our family dynamic has changed a lot for us.  We went from a two income family to one.  My husband works 13-14 hour days Mon-Fri and also works on Saturdays and some Sundays just so we can stay afloat.  Without him working like the would have lost everything.  Now, I know that a lot of married couples out there deal with this on a daily basis, but for us it is not the norm and its very difficult for my children and myself to not have him around more often.  I also have a ton of co-pays, medical bills, not to mention paying for forms to be filled out by the doctors for my job.  Its a daily struggle to make sure that every bill is paid.  We went from being comfortable again to pulling out all the stops to save our home, car, and feeding our family.  

MdDS also causes so many types of emotions to arise at a moments notice.  You have panic attacks, bouts of uncontrollable crying, irritation that makes you say so many things that you really don't mean, frustration, and mostly anger for losing part of who you are.  These emotions put a toll on the person suffering plus those around her/him.  Those people who are not around you don't understand what is wrong with you.  You have a select few who talk you through it or give you your time to hash out the feelings, but you truly begin to feel like you are crazy and that  maybe "all this is in your head" when you know damn well its not.   Luckly a lot of my family is used to my severe mood swings, but I haven't been this bad since I was a teenager.  My poor husband never knows what type of emotion he'll have to face when he gets home.  I could be OCD and cleaning, so happy I can actually dance around, so miserably ill that I'm falling asleep on the couch or in the bathroom, so angry that he could say "Hi honey" the wrong way and he'll get castrated.  But everyday he's taking it in stride and putting me back in my place and keeping me grounded. 

Now for the part that most don't want to talk about, and I usually don't, but its driving me crazy not to, so here goes.  Your love life sucks!  At least for me.  I know I'm not the only one with this problem, but here goes anyway.  When you are already moving around like you are on a boat, the last thing you want to do is make it worse.  And here comes the love life.  Any additional rocking sucks.  Its miserable when you want to be intimate with your partner and it literally makes you sick.  Your partner knows whats going on, yet telling him/her, "sex is making me sick," really doesn't come off well.  It makes you feel guilty.  It makes you feel like another part is taken away.  You try everything you can to not make your symptoms worse, but it doesn't help.  You feel like such a lousy spouse.  I want to be with my husband.  I want to show him how much I love him, yet there are so many more times than not that I just CAN'T!

Again, let me repeat how wonderfully patient my husband is.  He has been with me every step of the way.  He has been my rock, my punching bag (no I don't actually hit him), my tissue box, my support beam.  He has taken everyday in stride, as I know a lot of the spouses and partners with this syndrome have.  I know that this is just another test to our marriage and we are fighting every step of the way.  And when I'm tired of fighting, Josh rubs my shoulders, swipes away the sweat, gives me water, and pushes me right back into the ring to keep going. 

I know that I am doing the best that I can.  That none of this is my fault.  But sometimes I just have my own pity party and feel miserable for everything my family is having to go through.  Everyday is not only a struggle for me but for my family too.  But we will get through this as well, and we will keep pushing forward and come out much stronger than ever before.

"Just Breathe"~Pearl Jam

I'm back!!!  A week long vacation with my entire family in Nags Head, NC.  And what a week it was!  

I first and foremost need to throw out a huge thank you to my husband, mother, sister and cousin.  These four people really did get me through this entire week.  I would have gone home after the first day had they not had the patience, love and support that I needed for the week.  

So I'm going to try and remember the week as much as possible for my MdDS followers.

So, Saturday was the drive down.  We had a car full of stuff and kids (my two and my one year old niece Keeleigh).  The kids were awesome all the way down.  I went ahead and took my meclizine as well as I wore my scope patch behind my ear (I typically will not wear these anymore because I've all of a sudden become allergic, so I only wore it for the day).  We made sure to take many breaks on the way down.  When we arrived we went to meet the rest of the family at a different cottage.  Between the decorations (lots of lines and tiles) and the kids plus the drive down, I went into panic mode.  My husband ran back and got my music (my saving grace at this point), we moved my seat to one that my back was away from a lot of the commotion and my cousin made sure to keep talking to me so that I could at least have dinner. 

Throughout a lot of the week I used my MP3 player to just block out a lot of noise.  Nags Head is a tourist destination with a lot of tourist all summer long.  With that in mind, I took my music to keep me distracted anytime we left the cottage.  I was actually able to go walk on the sand (I walk like everyone else in sand so I didn't feel so weird).  I could only be near the water on calm days.  I was even able to put my feet in the water for a few seconds at a time.  The hardest part was watching all of my family enjoy the water like I used to.  I wanted to go boarding so bad or just go out and float over the waves.  Even my 7 year old son was boarding this year which was so fun to watch when I could.  I tended to just hold my camera and take pictures because I could watch the sequence of pictures instead of watching it live.  

One of the biggest reasons I wanted to stay all week is that I wanted my family to see me 24/7 with this.  My grandfather was the hardest one to understand.  On one of the first days I literally had to crawl to the bathroom because the tiles in the room were moving on me.  I told my mom that I needed to get a large bath mat to cover the flooring to which my grandfather really didn't understand why if we are only here for a couple of days to spend money like that.  After explaining to him how I feel and finding pictures to show him what I see, he began to understand.  He also didn't understand the music part, he thought it was "rude" to plug my ears.  I explained that the music gave my brain something to focus on besides all the chaos, and that the music was on a low setting so I could hear them talk to me as well as me being able to respond without yelling.  

I did ended up having a few panic attacks.  I have emotional breakdowns a lot.  I was always known as the emotional one in my family.  Yes, I was the cry baby.  I try not to show my emotions much in front of people, however when everyone is right in your face, you can't help it.  I'm not sure how others feel, but when my panic attacks hit, I cry...a lot.  The frustration levels are way too high to ignore it.  

 I did find that I could play cards for a short period of time.  I also started to read again.  I could only read for very VERY short periods of time, but I was able to do it.  I also was able to shop with people's help.  I found this postcard and had to share it.  I did not change anything to the pic, this is the way it was.  This is what I see when I'm having one of my severely bad days:

 I did what I set out to do.  I stayed an entire week at a cottage right on the beach.  I watched my kids have fun.  Had late night laughs with my fellow insomnia cousin.  I know I pitched fits, cried a ton, but I laughed more.  I have a lot of great memories of my vacation.  I am worn out and ready to just relax this week.  My lesson that I've learned this week is to be very VERY prepared for anything.  Tell your fellow vacationers your typical behaviors or signs that help you out so they can help the way you need them to help. Let them know what you can and cannot do.  I now know that if I put my head to it, I can accomplish it.

More pictures to come as they go along with more stories. 

"Pure Shores"~All Saints

All day today was spent packing for my family's annual trip to Nags Head, NC.  We've been going to the same beach cottage with my grandparents since my mother was 16.  We all cram into this tiny cottage with one shower stall bathroom.  Sounds hectic and it is, but it is so much fun.   We laugh more there than any time of the year.  The cottage walks right out onto the beach which has always been my favorite part.

However, this year I am so nervous about going, for a lot of reasons.  1.  I am really worried about the sand/water.  I'm going to stick with just sand for awhile to see how I do.  2.  There is a ton of people in my family.  Small space, lots of people, lots of kids running around...even though it is family, it does cause some anxiety.  3.  I'm sure I'm going to forget to pack something.  

So I've made myself some tips.

1.  I know I can handle sand, because I've tried it before.  I have to just get to the umbrellas and I can sit in a chair and not move.  I will only TRY the water if it is extremely calm, and I'm not having a bad day already because I don't want to make symptoms worse.  
2.  Ton of people=lots of help with my own kids and my symptoms.  I can always just put my music on and go to a back room to calm down for awhile.  I have a very supportive family who will be glad to step up when I can't which is definitely helpful.  
3.  I wrote lists on Sunday.  I have been packing since Monday of this week.  If I forgot it wasn't meant to be.  

I am going on this trip, I'm going to stay down there, and I am going to have a good time.  I am going to continue my daily walks because I don't want to fall out of habit of not walking.  The more I make myself walk I start to feel good.  May not take the symptoms away, and some days actually makes them worse, but I need to do this for me.  Its my exercise to keep me somewhat healthy.  

The stress that MdDS brings on you for trips like this is crazy.  Its insane how much pressure we put on ourselves with this syndrome.  We build up the anxiety, the depression, and the misery...I'm not going to.  I'm going at this with a happy heart.  My grams (who passed away when I was 15) loved this cottage.  It has been my goal to be down there just for a little bit to be with her.  This time, I know she is watching out for me.  She is going to make sure that I'm happy, my kids are happy, and our family is happy through out the week.  I'm going to finish ALL of my packing tonight.  I'll get to play with my baby niece tomorrow morning, and then we will all get packed away in the car.  

I've planned it that we will stop a couple of times.  I'm not going to push myself in the car even though it is only a 2 hour drive, it is the longest drive that I will have taken since being diagnosed.  

I'm not going to write next week do to my trip and lack of wireless connection, however I will be able to update my facebook with pictures.  I'll see you all in a week!  Wish me luck!

"Miracle"~Celine Dion

So today's blog goes along with a post on the MdDS group post that was started.  How to raise a child with having this syndrome.   

When I was first diagnosed (and still on my bad days), I wonder..."How in the world am I going to raise my kids?"  "How am I going to take care of them, when I can't take care of myself?"  

As a mom, this has been so difficult for me.  Maybe one of the most difficult things to try to succeed through all of this.  Being a parent is a hard enough, but to be dizzy, nauseated, and constantly in motion makes in so much worse.  You have days where getting out of bed to even go to the bathroom is an extremely hard task.  I am fortunate, I guess you could say, that I have a 7 year old and a 4 year old, so they can help themselves for the most part.  But, and its a huge BUT, its not the same.  Its hard to sit, literally, and watch your children grow and you not to be a part of the actual activities of it all.  And for those parents whose kids are really young, more power to you!  I really don't know how you work that out!

A mom today wrote that she signed up to go on a Girl Scout camping trip with her little daughter.  Its a long trip, and her symptoms are extreme.  She is dreading the trip and thinking about not even going.  Your children don't fully understand that you have these limitations.  I know how that mom feels.  All the fun summer things to do, going to the zoo, Busch Gardens, movies, etc. They are daunting tasks.  My kids love to go out and just run, but when I'm home by myself, my fears are so high that something might happen that I don't let them out.  This isn't fair to them, but with this you can't just jump up and run help them.  Even in the house you have this fear, but at least its a smaller space. (Not so far to run).  

Cooking for your kids is miserable because you can't even cook for yourself.  You end up with microwave meals that aren't healthy or having people bring you fast food.  Granted, yes, your kids are eating, but not food that is good for them.  I've gotten better w/ the cooking but I know there are some parents out there who can't even step foot into their kitchens.    

As a parent, your child is first in your life.  Its the way that it goes, but its so hard not to let MdDS take over and become first.  Your kid(s) suffer.  Mine have.  I can't work anymore, so my husband works more.  Nowadays my kids barely see their dad because of this.  They have a mom who is trying everyday to fight this, and some battles I'm winning, who is irritable more than not, and who just plan feels miserable some days to where even them running around in the house becomes too much.  The disappointed looks is heart/gut wrenching especially cause its not a "Because I said NO!" moment its a "I'm so sorry, I CAN'T" moment.  They try to understand but they are only 4 & 7.

Now my kids have started learning things that help me out, and they are coming up with their own fun.  My son even stops what he's doing to hold my hand or even just come check on me.  Lily has become a snuggle bug on my bad days.  We catch up on "Good Luck Charlie" or "Doc McStuffins" and if we are really frisky we watch back-to-back Princess movies (tiara's included).  But some days even watching those with her is draining.  

I love my kids.  They have been such a big support.  I've learned to become a different type of mom.  I'm adjusting and so are they, but it definitely doesn't make the process easier.  I'm not the mom I used to be, the mom I used to love being.  This new mom is taking some getting used for all parties involved.  I always said I wanted to be a stay-at-home mom, but I wanted to make that choice; however, He has a plan for me to do this now.  So, I'll become the best stay-at-home mom in the whole world....right next to the other MdDS stay-at-home parents. :-)

The song "Miracle" was on Celine's lullaby CD.  Its a song that used to help Seth fall asleep when he was a baby.  Josh bought the CD for me for my Mother's Day before I had Seth.  This song was one that to this day brings tears to my eyes, and takes me back to nights rocking in our office chair with him on my chest humming the song to him. 

My mom taught me to be the best mom I could be, no matter the situation, so I'm going to be the best mom in this situation.  

I Won't Back Down~Tom Petty

My goals for this week is to find ways to make my life easier with this syndrome...so here goes my first few tips.

Tip one-Help for anyone with any type of disability with home security.  I had my rep from ADT come to my house to check out my system and see if there is a way we can make it easier for myself.  The problem with my system is that the panel is at the top of my main stair case.  You have 30 seconds to turn it off when you open the door and 1 minute to get out the door once its turned on.  My problem is I don't move that fast anymore.  ADT now has an app for the smartphone that they are coming to set up for me!!!!  This app will allow me to Arm & Disarm my system on my phone, no matter where I am...even out of state if someone needed to get into my home in an emergency situation!!!!  Also with a push of a button I can contact my ADT people (just like w/ OnStar) if I need police or fire assistance and they will stay on the phone with me.  Piece of mind without feeling like one of those seniors with a LifeAlert hahaha....This is great for the security of my family, and we've had ADT so far for 4 years and love them so added plus of not having to switch companies.  Another plus?  Discount on homeowner's insurance WOO HOO!  The discount I'm getting actually covers the cost of the system!

Tip two-Help in the kitchen.  One of my biggest problems was being able to cook real meals for my kids because of standing over a stove to watch food.  So first thing is a crock pot.  I now make 2-3 meals per week in the crock-pot.  I use my pampered chef mandolin to slice food and my food chopper (thanks Sarah) to chop smaller pieces (so I don't have to worry about slicing my fingers)  I have measuring cups that are flat on the bottom so I can set them down to pour items in them.  I also will be freezing my leftovers from now on for those days where cooking is just not for me.  I can thaw them out and then microwave them to heat it up.  

Tip three-Cleaning.  Clorox wipes and Mr. Clean Magic Erasers have become my friends.  Scents tend to bother me on my bad days, but the house won't clean itself, so on my bad days I use these items instead of my heavy duty cleaners.  With laundry, I have my four year old help with grabbing stuff and putting it into the dryer, however if you don't have a child available, you can use one of those grabbers reach your top cabinet shelves.  This helps relieve the bending over and squatting as well.  I got a Swiffer Sweeper mop and took the handle off.  I sit down and mop on my hands and knees.  This helps with the symptoms from standing.  

Tip four-Remember to Rest.  Take breaks.  Make sure you eat your meals even if you feel nauseated.  Your body is fighting as well as trying to do what you want it to do.  Drink plenty of fluids and if you take medications, watch the time and be sure to take your meds on time.  Don't let them wear off!!  This has happened to me a few times because I don't realize how long I've been cleaning and just forget.  I've now started to set my phone.

Tip five-If you symptoms are really bad, don't worry about your house!  Order in pizza or chinese and just let the house go!  Your friends and family know what is going on and know that you are struggling on a day to day basis.  Don't hesitate to ask for help when needed.  

I going to keep fighting this fight and find ways to get my life back and I won't back down.

"Defying Gravity"~Idina Menzel & Kristen Chenoweth (Wicked Soundtrack)

Today I got to go spend time with my beautiful sister, her new dude, and my beautiful niece.  It was only for a few hours but I LOVED EVERY MINUTE.  I laughed, sang, and dance with Keeleigh & Tara in the car to everything from LFO, Hanson, Mandy Moore & Wicked.  It was the best time.  We had a very yummy lunch at CPK.  MacArthur was pretty empty so I wasn't having issues with crowd, just issues again with their tile.  We showed just how bad our issues with Bath & Body Works really are.  (Even Keeleigh conned Travis into buying a light up rubber duckie).  Lunch was totally yummy.  Next we went to Sanrio and there me and Keeleigh played games to win Hello Kitty stickers, which are now all over her stroller thanks to her favorite aunt :-).  Lily now has Hello Kitty nail stickers for her next Pedi.  

I came home and went for my walk with my Pops and kids.  Yesterday we walked to Seth's school which tells me I can take care of him during school.  Today we walked to 7-11 for Slurpees and again I thought, even if I can't get to the store if I really need something during the day, I can at least walk to 7-11. 

Its crazy how I can deal with the walking.  I've amazed even myself with the walking.  As long as I wear flip flops, sneakers tend to make me feel worse.  I don't walk well on gravel, but sand is okay.  Really soft surfaces are not good either.  

I started working on getting ready for the cottage.  I made lists and started gathering clothes.  Tomorrow I'll have the kids with me, and I'm hoping to work together with them to get some more done.  I don't want to last minute pack because I know I'll forget something that I'll really need to take down with me.  We will see how far I get tomorrow.  I'm stressing big time because I know I forget everything.

Tomorrow is another day :-)

"Watch Over Me"~Hanson

"The years go by, they're adding up
She clicks her heels but she's still stuck
She's giving in but won't give up she'll never stop
And she says please, and she says please
And she says please, watch over me
And she says please, and she is,
On her knees and she begs and she pleads"

I normally don't start with lyrics, but this song has been going through my head since last night.  I had a massive meltdown last night (hence the reason I didn't write).  What started out as one conversation with my husband ran right into my meltdown.  I couldn't stop the tears for a few hours.  Ending in me sitting on the bathroom with my head on my knees and my husband sitting across from me again being supportive.  Here is the cause of my melt down:

Everyone knows I've been battling this stupid syndrome, yes its stupid, its dumb, and can go suck it for all I care.  This crap has taken a toll on me, not only physically but mentally.  I feel like someone has traded my brain.  I have become a Nazi about my house being my clean (which I've never done ever it my life....to be honest, I didn't even know if I had Pledge or Windex in my house before two weeks ago). 

The problem is that I dealt with a lot in my life, one being an eating disorder.  Most people who know me, don't know that I had to fight this, and had to fight very hard to beat it so far twice in my life.  Since this syndrome has started I've gain a little over 10 pounds (the most I've ever weighed in my life), now granted at first I was okay with a little more weight (I felt pretty good, and I am not trying to sound conceited but with my height, I hold weight well), however starting about 2 weeks ago I would look in the mirror and see the addition weight.  Since then I've been fighting to eat each day.  I make myself eat my three meals, and I've started walking everyday.  The sight of the weight literally makes me sick and I do end up getting sick.  (I don't make myself throw up, but my body does it on its own). 

I am miserable.  In the last two weeks, I've become someone that I don't know who I am.  I am A.D.D. with EVERYTHING and I'm not over-exaggerating about that!  To write this blog, I have to put earbuddies into my ears and play music so I can concentrate.  I have become OCD about everything in my house going through and re-organizing my kitchen cabinets, clearing my fridge & freezer (including bleaching the shelves), re-organizing linen closets, bathroom cabinets and drawers.  This sounds great, but what happens is I go to brush my teeth, I see a hand towel on the counter, I go to put it in the closet and end up ripping out the entire thing, once I'm done I go back to my toothbrush and see spots on the faucet, put down my brush again clean the entire bathroom (even though I cleaned it yesterday), satisfied its clean I go to another room completely forgetting I originally wanted to brush my teeth.  Next thing I know I am out in public and my teeth feel gross.  (yes I've managed to chew gum and use the disposable toothbrushes but its not the same).  I've done this now to my utility room, both bathrooms, kitchen, dining room and half of my living room, oh and both kids bedrooms.  Every night I have to clean every dish in my sink and check the laundry before I go to bed.  I can't sleep if I don't.  I will stay awake and thinking of it. 

The other part is that I have had issues with depression in the past (but have not had issues with it since high school).  Now it too is raring its ugly head.  I'm frustrated and pissed off over it.  I don't want to try any more meds, or treatments.  For the first time ever in my entire life I am ready to just give up and quit.  I'm officially tired of fighting this STUPID syndrome.  And most of all, I'm tired of pretending that I am fine, that I'm okay, and everything is "hunky-dorey."  I'm not happy.  I'm miserable, tired, stressed out, frustrated, lonely, and just plain worn out. 

And now, I'm done...thanks for reading.

"Litost"~The Ambassadors

I'm sorry I didn't write yesterday.  But I did meet my goals of a one mile walk with my Pops, kids and pup :-)  I also finished the office with the help of my hubby.  Goals met for the week!

I chose this song today because on a goal that I have been working on without telling anyone is to start learning how to dance again without falling.  I have been doing plié first-fifth position all the way to grand plié (bending knees to almost a squat position halfway down and then all the way down while feet are in different positions) while holding onto a sturdy chair.  While holding on to the chair, I also have been able to do battement to grand battement (basically slight kick front, side and back and then high kick front, side, back).  My two biggest accomplishments were to be able to balance on the balls of my feet.  This song has been slow enough for me to be able to accomplish it.  I am so excited about it :-)

Today my besties came into town to visit.  I now have four adults, two children, 3 dogs, 1 cat and 1 rabbit in my house!  But its been fun!  I walked about 1/3 of a mile today with the two besties and the 3 dogs so I did get my walk in late tonight. 

Need rest, will write more tomorrow. 

"I'll Be Seeing You"~Frank Sinatra (Pictures included)

So last Friday our family mourned the loss of our black cat, Omen.  She was my husband's cat of 13 years.  Now if you know my husband and ever saw his cat, you would know that their relationship was very strong.  For those who say that cats don't have a personality or they are boring...this cat knew her name and knew her dad.  Her dad could call her from any room in the house and she would come running.  She also had instincts of the rest of the family.  She would always keep you company when you're sick.  This became very difficult at times when Seth was sick due to asthma and we tried to keep her out of his room at the time.  My kids had their responsibilities for the pets.  Seth gives them water while Lily feeds them.  The loss of our cat hit them pretty hard and they have told me every day how much they miss her.  When I awoke this morning, my children asked if we could make a sign for Omen.  I told them that unfortunately a sign would not last outside, but I immediately ran outside and grabbed a brick which they painted.  When Josh got home tonight, we all went out back to lay down the brick for Omen.  It was a good way to say "See you later friend."

On an MdDS front, today was nothing but mental symptoms...the dizzy, motion sickness, the irritability, the losing focus.  I swear today I had ADD with cleaning my house.  I would start with one thing and go to put an item away and see something else and clean that up.  It was a difficult day to stay focused, but I did get a lot organized.  I will soon have our bedroom & our office done at the same time.  My kids thought it was funny when I had to mop the floor and literally was on my hands and knees doing it.  However, I will need to have someone go back and paint both rooms because I can't handle all of that.  
I walked my 8/10 of a mile today and tomorrow we are going for a mile!  My kids have walked with me on Tues, Wed, and Thurs.  Today Keith came along as well.  Yes, my Pops still walks faster and straighter than I do.  I had to stop a few times to get myself straight again.  

I will give myself big props for the dinners I have cooked this week.  Cooking has been my biggest challenge and one of the things that I have missed the most through this.  Monday was Chicken in a crock pot, with rice and veggies.  Tuesday was baked salmon with egg noodles, squash and green beans.  Wednesday was beef stroganoff in the crock pot with egg noodles.  And tonight I made baked chicken with spinach, bread crumbs, parmesan cheese on top, with Rice-a-Roni.  Me and rice or noodles that have to cook for awhile on their own, I have learned, are AWESOME for me.  And on the menu for tomorrow is Salsbury Steak w/ Mashed Potatoes and Broccoli.  I'm cheating and making instant mashed potatoes for the main reason that I can't keep getting up to check if potatoes are done and I don't trust myself to peel them by myself just yet.  My hands aren't steady enough for all that.  

Today was a Meclizine day and I think tonight will be a Valium night.  

"Remind Me"~Brad Paisley f. Carrie Underwood

Where to begin for today?  It has been one of those, however it did end on a good note.  
This morning had to follow a toddler up & down the street that was loose until I found who his parents were.  I was already feeling out of it prior to, but by the time I got back inside I ended up taking a nap.  I ended up having to take my patch of late last night because my ear was driving me crazy.  Officially not putting in on unless I absolutely have to.  
Today I walked with Pop again, just around the block (which he informed me is 1/2 a mile).  I'm hoping that we can do a mile walk by Friday.  The walks actually make me feel really good.  I don't know if its the exercise, the fresh air, or the catching up with my Poppa, but I love every minute of it.  Creamer (my pup) seems to like it as well.  She gets so excited when Pop shows up.  
Today I also decided to tackle my office space.  If you've known me, this project has been going on since last year to rearrange the house.  I made the trips really easy on myself and took a lot of breaks.  
My favorite part???  I started my old college computer up.  I didn't even think this would work at all because it was never stored properly after I left VCU, but it worked fine.  My background pic on the desktop was Josh from when we first met, and a pic of the ultrasound of Seth.  I then find all my pics that Sarah took of me each month of the pregnancy and all the ultrasound pics that were scanned into the computer.  I was so excited.  I reminded me of when Josh & I first met.  That time before the kids, the learning about one another and falling in love.  Its funny that I started thinking of this because I ordered a shirt & dvd that he has been wanting and it came in the mail (thanks Momma Peggy for the help out).  I set the stuff up somewhat "hidden."  The look on his face after seeing them made my day.  I am exhausted and worn out, but my husband looked genuinely happy for the first time in a few days.  
Hey Honey...it was a good day Tater :-)
Now for much needed sleep....

"The River"~Garth Brooks

This morning was ROUGH!  I woke up so tired!  I completely forgot to take my Valium before bed because I was up so late that by the time I went to bed I just fell in not thinking.  I did get about 8 hours of sleep but was so out of it.  Due to the weather, I didn't do my morning walk but I did get it in this afternoon.  I've been wearing my patch all day today mainly due to how bad my morning actually was.  I'm surprised with how many times I've fallen in my room, I haven't broken anything or anyone for that matter.  
After today's plummet into two baskets of clothes and a clothes rack, I've decided I really need to get stuff in my house moved to where it is supposed to go.  At the moment my office is in bins, boxes & piles in my room along with my clothes and other items from my old bedroom.  Everything was put on hold a while back, but its time I deal with it.  So my goal is to do a little here and there to get it done.  Its frustrating that you can't just jump up off the couch and do it.  It will be done one bit at a time.  
So anyway, I did get my walk in today.  I really did only one block, but I did it.  This time pop and I not only had the dog but both kids.  Pops informed me today that I went back and measured yesterday's walk and it came out to 8/10 of a mile!  I ALMOST WALKED A MILE YESTERDAY!!!! Holy Cow!  
So I'm off to bed, I'm exhausted...

"Take A Walk"~Passion Pit

Woke today with only a little hangover from my Valium.  (Took only 1/2 a pill last night...think I'm going to try 1/4 of a pill).  I really don't like the hangover feeling.  Did my normal "Get Up" routine of bathroom, breakfast, teeth, dressed, however finding clothes that fit became a problem.  9 weeks of mostly couch sitting and really not eating healthy (mainly due to inability to cook right, but also a small addiction to Eggo blueberry waffles and Wise Cheez Waffles) I've gained right at 10lbs.  After successfully squeezing myself into a pair of jean shorts & t-shirt, I started my deep breathing exercises to mentally prepare myself for my first walk around the neighborhood.  
My Poppa met me at 9 am on my front porch.  My goal to walk around the block without ever having to grab his hand or arm and without stopping to sit or close my eyes.  My focus was to walk at my normal pace using my counting for my steps like in rehab.  Each turn I focused on something in front of me and every 4 steps I would count "1, 2, 3, 4."  Also my Pops would continuously talk with me which was a good distraction.  We also took my beautiful pups Creamer.  She walked a foot behind me (like usual since this started).  She was a happy pup to be home.  
HOWEVER!  I walked more than just around the block!!!  My neighborhood has a lot of turns and curved roads.  In actuality I probably walked more like 3 blocks!!!  I was definitely tired, but I felt so proud of myself.  I immediately got on the phone with Josh to tell him what I did!! 
Afterward I went to my sister's place to hang with her and my niece.  I came home after a day with her, fed the kids, got Seth ready for Boy Scouts, went to scouts (thanks to mom driving), and even finished coupon clipping.  
I've decided I'm also going to keep track of how much I am saving with coupons and start working towards purchases for the house.  Even though we can't do any of the big stuff I want, if we do the little things one by one, I think Josh & I will both feel like we are accomplishing something.
 Well, that's all for today, and I think that is enough!  I've only had to take 1 Meclizine, I never put a patch on yesterday, but I am tonight because I'm feeling all over the place.  

So today "I took a walk Take a walk, take a walk, take a walk Take a walk, oh-oh-oh Take a walk, 0h-oh-oh I took a walk" haha 

"Glad You Came"~The Wanted

Today I started out fairly symptom free.  My body ached from yesterday but nothing a bit of stretching didn't fix.  I have tried taken my Valium at night two nights in a row and realize that I think its too strong.  I'm waking up feeling groggy and just weird.  I've decided that when I go to bed tonight I'm going to try and half my pill to see if it helps.  I'm taking the Valium so that I can relax enough since my symptoms are kicking up really bad at night now.  

Today was movie day since Lily earned a movie trip with her sticker program.  She picked "Brave."  This movie was very sweet.  A great mother/daughter story as well as about your fate and destiny.  Perfect for our life right now.  I had a hard time throughout the movie during some parts where their was a lot of running or action.  Lily loved the movie and was very happy to be going with her family.  

Today is also was family dinner night.  A while back we decided to start having family dinner night on Sundays for my mom, her kids and their kids.  This has been a time that I really enjoy.  I can be myself, symptoms and all, in an environment that I am comfortable in so I can actually enjoy fun conversation and playtime with my kids and niece.  Even if the conversation ends up with me sitting on the kitchen floor while people cook, or laying my head on the dining room table, I still get to laugh and have a good time.  With my family there are no lines, every topic is up for discussion, no such thing at TMI.  This open conversation leads to topics you never thought you would discuss with your mother, sister, brother, husband, but it does lead to lots of laughs and a whole lot of "Now wait just a minute." Hahaha.  You know once you walk through the door you could easily be the topic of discussion or the leader of the discussion.  At the end of the night, even though everyone is tired and ready for bed, you want to stay still and laugh some more.   Through these dinners some friends have come along and become part of the family.  They too are into the conversation whether they want to be or not.  That policy goes along with the policy that aunts and uncles are allowed to spoil the nieces and nephew without any say from the parents, the sibling code of whats said between brother and sister stays there, and any and every embarrassing story about you can and will be told.  I love this about my family.  

After all of that though, tonight I'm very symptomatic.  I'm not sure what has triggered it, however I'm so nauseated, dizzy, and frustrated because of it.  I got away with only taking a Meclinzine and a Phenergan today (mainly during the movie), but I'm thinking I am going to have to put on a patch tonight.

Tomorrow morning I start walking around the block.  My Pops has said he would walk with me and in the words of my sister "Its sad when your 80 year old grandfather walks better than you do," so my goal will be to at least walk as good as him.  We shall see how it goes.

"Keep Your Head Up"~Andy Grammar

The night before last my husband gave me a much need swift kick to tell me that I'm doing fine.  I need to keep my head up and moving forward because in the last 8 weeks I've done more than I apparently thought I was doing.

Yesterday I woke up determined that this MdDS is not going to push me down any longer.  I woke up and cleaned my kitchen and then decided I'm going to get my family back on track.  I don't trust myself to cook over a stove top now because I can't stand for long periods of time without an episode, however I'm good with cooking using the oven & microwave.  I started a meal plan again for the family and made a shopping list, coupons included.  Now to some people this may sound trivial, however being able to concentrate on something as small as a grocery list is very difficult for me.  Trying to remember anything anymore is a challenge.  This now involves me checking the fridge multiple times to make sure I don't have ketchup or mayo, checking the pantry to make sure that yes we do have rice but not egg noodles and not the other way around.  Then after making the list, scouring weekly store ads, websites and coupons.  This normally would take me a total of an hour in the past...yesterday it took me 6, but I did it.  I accomplished it.

Today, with help from my mom and wonderful kids, my husband and I ended up shopping to different stores for various reasons.  The last store was my grocery store.  My goal was to be under $150 with my card and coupons.  We came out less than $144.  I met my goal not only for the budget, but the fact that from 11 o'clock this morning until 7 o'clock this evening I was out on my feet shopping.  Getting in and out of the car, in multiple stores with swarms of people (no tax weekend for school stuff).  We went to the Boy Scout Store, Ferguson Plumbing, Sam's, Walmart, and Kroger all in one day.  I survived with only a few bad episodes of dizziness and nausea and only one panic attack.  This was a successful day.  I plan on tomorrow to be the same.  

"Free To Be Me"~Francesca Battistelli

Welcome to my journey.  I am starting this blog to track my day to day.  You are welcome to follow along if you would like.  

To give a little bit of background.  I am a wife to a wonderful husband.  This September Josh and I will be celebrating 5 years of marriage.  We met in college over 8 years ago while I was attending VCU.  We have a son, Seth, who is 7, and a daughter, Lily, who is 4.  


The reason why I want to track my day to day is because on May 28, 2012 my entire life changed.  After a weekend trip to Pennsylvania I woke up Monday morning unable to get out of bed.  When I did get up, I walked like I was drunk.  (I don't drink.) I was sick to my stomach all night the night before and when I started to throw up, I would black out.  This went on for 3 days before I finally went to the Urgent Care (Wednesday).  The doctor ran lab work.  He stated that I was probably fighting off a virus and it will go away.  By Friday I wasn't any better and by Saturday I was in the ER.  Labwork, urinalysis, & EKG and I'm told I'm dehydrated from earlier in the week.  By this point I can't walk without help.  I'm constantly dizzy and nauseated.  I feel like I'm on a boat rocking back and forth.


Monday morning I was feeling a little better but I have a lot of joint pain in my hips, knees and ankles.  I am still feeling worn down, tired, and dizzy.  I still feel like I'm on a boat, but I'm not getting sick anymore.  I decided to try to take my son to school four blocks away from my home.  On my way back from dropping him off I started to black out again.  I immediately call Josh and my mother.  Josh came to get Lily and wait for my mother-in-law to pick her up while my mom took me back to the ER.  They decide they are going to do labwork, urinalysis, EKG all over again.  They are going to start meds, order an MRI and CAT scan of my head.  The nurse goes to place my IV and I literally jump off the bed.  The pain in my elbow has me in tears.  It was the worse pain I've ever felt.  In the end they tell me I have Vertigo and I need vestibular rehab.  


I go home and immediately call my favorite ENT specialist, Dr. Dorofi, who tells me (over the phone mind you) "You do not have Vertigo but Mal de Debarquement Syndrome.  Look this up and I will see you tomorrow to officially diagnose you."  I immediately start bringing up the information and its exactly how I feel. I also read..."There is no known cure."  "It will go away on its own, if ever."  "Some people it lasts a few weeks, a few months, up to a year."  I later find out that there are people who have had it for years.


Fast forward 8 weeks later.  I'm still here hanging out on my own personal sailboat (as my little brother tells me "happy sailing" when he finds out.)  I have gone through 6 weeks of vestibular rehab.  I have tried Meclizine, Transderm Scope Patches, Valium, Phenergan, and Zofran.  I have seen a chiropractor as well.  I am waiting to see a Neurologist because apparently my coordination is not correct, so I need to make sure nothing is underlying. I have been unable to work, unable to drive, and unable to go out in public without a lot of prep work prior.  I have however re-learned how to do a lot more. Some days are really good, while others I don't even like to talk about, but I must. 


Music has gotten me through a lot of good and bad days in my life, and it is no different now.  Each day I have a different mood of music and depending on what my goal that day, the music tone follows.  Here is my day to day progression...