"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.