"Home"~Phillip Phillips

Writing has been tough lately.  Its taken time to get this blog to you, mostly because I have not been home to write, but also because I haven't been in a writing mood.  
I made my trip to Richmond okay.  We left Friday night kinda late and got up there really late.  The next day we prepared for my girl Drea's 30th!  I wouldn't have missed it for anything!  She had a black & white soiree and it was a blast.  We decorated her house so cute! I was doing so well that, with help from my hubby, I was able to hang decorations up high on a wall with a chair!  I was so stable feeling on Saturday with only a few times that I felt slightly dizzy.  Then the party started, and as people started pouring into the house I decided to hide out in the kitchen were it was slightly less chaotic.  As I became used to the crowd, I was able to move around and converse normally with the guests.  My husband was by myside the whole time.  I know I pushed myself way too much, but I will not let this control me.  I will not let this takeover my life and tell me what I can and cannot do.  I refuse to miss out on my best friends birthday.  I put on a brave face and I tell people that I'm fine.  If I'm not fine, I sit down or move to a less crowded area.  Sunday I woke feeling dreadful.  I took a nap before we had to start the trip back home and I slept most of the way back.  
I have become stubborn with this.  I've put my foot down and told myself that no longer will this make me miss out on what I want to do, so I push hard.  Sometimes I push too hard, but I want to live my life.  There are days where even me pushing myself isn't enough and I'm stuck laying around the house, but I do what I can.
On a side note, I love that my kids love music as much as I do.  They dance for me when I can't.  They sing my favorite songs when they think I'm not listening.  They are at a good age to appreciate all types of music.  Lily informed me that she loves the girl music, however her favorite song at the moment is "We Are Young" by Fun.  She loves to dance to anything.  It cracks me up that I watch Ellen everyday and she has to dance with Ellen.  We even have to rewind the recording so she can dance some more.  Seth is into LMFAO.  He's learned all the words to "Party Rock" and "Sorry for Party Rocking."
Music is healing for me and I'm glad to see that my kids ask for the volume up so they can rock out.  I zone out and they rock out!  

**I would like to note that I started this blog earlier this week.  I was in the process of editing it, when tragedy hit today on the news.  I originally wasn't going to post today, but decided that I needed to. 
My thoughts and prayers go out to all of those affected by the shooting in Connecticut.  It is a horrible tragedy and my heart goes out to those children, teachers, parents, school officials, families, and community members.  I cannot wrap my head around how all of this has happened, as most of the country feels this pain.  To talk to my son about what happened was so hard, but he asked me questions and knows that I am always honest and will answer what I can.  I brought the details down to his level, told him what I felt was appropriate information to an extent.  What brought me to tears again today was that he said, "Mommy, God was ready for those babies to go home.  Can we pray for them so they can look out for other kids like me and my friends?"  Out of the mouth of babes!**
 

"I Will Wait"~Mumford and Sons

Let me just start by saying that I am not one to blast my religion onto anyone.  My beliefs are mine alone, those close to me know how and what I feel.  I hear all of the time, "How come we do not see modern day miracles?"  I say that its all in how you look at the world and your perspective.  We wonder, "Why me?" but forget to look at our neighbors who suffer worse.  In the last year I will state that I have seen two wonderful miracles, two acts of my loving God who has been looking over my shoulder and my family's.  I will not go into details of these miracles because they are very personal, and over time I  have changed my perspective.  At the beginning of this summer when I was first diagnosed, I selfishly thought "Why me?"  However, now looking at the bigger picture, yes I have MdDS, but two wonderful people in my family have been blessed more than I can ever imagine, and if I have to carry this burden, but they have been helped, then I will say my prayer of thanks.  I would gladly live every day with MdDS for the rest of my life thanking my God that I have my family by my side.  Its all in how you look at it.  Its a struggle more ways than one, but I will push through, we will push through.

This week has been so stressful.  I won't go into much detail because it is extremely personal and not my information to pass along, so I won't.  BUT! I plan on ending it on a fantastic note with a short trip to see the besties!!!  I'm leaving for Richmond for the weekend to get away and have a relaxing time with some friends.  My girl, Drea, is turning 30 and for the last 10 years I've celebrated her birthday either by her side or over the phone!  I'm not missing this year for anything!  We are leaving in just a few minutes and I've never been more excited to get away.

I've taken a few day trips, but we haven't done an over night trip in quite sometime so this will be good for me and my family.  We definitely need it.  So off we go! 

"Old Pine"~Ben Howard

These last few days have sucked!  I have felt miserable.  I've put on a brave face, but its been extremely hard, and last night I really started to crack.  I've been taking my Valium at night more often than I have in a long time.  My insomnia has kicked back in so hard.  I've also started getting severe joint pain.  The last time I hurt this bad was in the very beginning of my MdDS.  
Emotional I'm tense.  Every little thing aggravates me.  I have been trying my eyes closed counting, but I'm tense.  I'm snappy towards my kids and I don't want to be.  I've even snapped at my husband.  When he asked me what was wrong,  but I just broke down in tears.  
I don't know if this is from lack of sleep, hormones, or the valium that is screwing with my head.  The Valium is supposed to calm me enough so that I can sleep, but it hasn't been helping.  I've been sleeping in 1-2 hour increments.  Its frustrating.  
My house is a wreck.  I'm supposed to be getting ready for Christmas.  I have a living room & dining room full of packages that I need to wrap and all I do is look at them with frustration because I haven't even been home to touch anything.  I feel like I do nothing but dishes all the time, yet anytime I need a friggin fork there are no clean ones!  Who gets mad over a dirty fork!  Seriously!  I have baskets of laundry that have been clean for weeks and yet they aren't folded or hung up and after I use up all my energy to move things from the washer to dryer, I don't have energy to fold & hang.  So the baskets sit there, and then they get dug through because people need clean clothes and then they end up all over the floor out of the baskets.  I had a good system going with my laundry, but lately I've had no energy to do anything.  I clean one bathroom and I'm done for the day.  
I hate feeling like this.  I would love to have one "normal" day, hell at this point I'll go for one low-on-the-scale kinda days!  There is so much to be done, and no time at all for any of it.  
My goal for this week will be to get at least the laundry finished, presents wrapped, and all the dishes done before I head to Richmond this weekend.  I hope I even make it to Richmond, but that's a different story.  
So now I'm off to bed with another Valium in my system hoping for some rest.  Good Night all!

"Sleigh Ride"~SheDaisy

I'm sorry it has taken me awhile to write, however, I broke my laptop :-(  On one of my bad days I set it on the floor next to my bed.  Later blankets fell on top of it and I forgot it was there on the floor, so I accidentally stepped on it and cracked the screen.  I'm working on getting a new one, so for now I'm using my TV as my computer monitor :-)

So the holiday season is officially upon our household!  Thanksgiving went pretty well.  It definitely wore me out to the point of utter exhaustion Friday.  I used to be a Black Friday shopper, however I knew I wouldn't be able to handle the crowds this year.  It was definitely a bummer, but I new that I would figure something out for getting my holiday shopping done (tips below).  I spent my Friday in bed, and Saturday was spent running errands, and then putting up our Christmas tree. 
Our Christmas tree was given to us by my in-laws.  Thank goodness we have cathedral ceilings because it wouldn't fit in a normal sized room.  I'm typically not scared to stand on chairs or ladders to decorate the top of the tree, but this year was really tough.  I couldn't look up for long periods of time and I couldn't stay on the chair either so it took my kids and I longer to decorate than usual.  Luckily I have an awning that my daughter was able to reach over to put on the angel (it was her first time).  I then used a dining room chair that had arms around it so I felt a little more secure than being on a step ladder.  
Our tree is up, and Christmas music has started and I am feeling like I'm definitely in the holiday spirit.

I came up with some tips for shopping for the next month.  These can be helpful for any type of shopping whether its in a grocery store or out for buying presents.  My husband and I went to Bass Pro Shop on Saturday and the place was crowded.  Not as much as Black Friday, but it was still pretty packed.  This gave me the idea to do this list to help out, so here goes:

1.  Shop with a friend, family, partner, etc.  Have another adult with you if you are going into a store that you know will be full of people.  Best Buy, Walmart, Target, etc.  Big name places are having huge deals this season and tend to fill up on the weekends, which leads me to my second tip...
2.  Try to shop during the week in the early morning.  Most people have left for work and stores tend to be a little more empty during these times. 
3.  Now I know there are a lot of people who can't go during the week, but check your stores hours.  Most stores have extended their times for the season.  Check to see when they open on the weekends.  Early shopping hours on Saturday & Sunday are better times.
4.  Shop with your local Mom & Pop stores.  Small business could use your help this season.  They are usually less crowded as well.  Help your local farmers by buying their produce instead of fighting the grocery stores.  Go to your local farmers market to buy your holiday decorations, candles, soaps, etc.  Craft bazaars at schools and churches are in full swing as well!  You never know what you will find, and besides its outside!  Plenty of room to roam around on our rocky world without having to worry about bumping into things.  
5.  Shop online!  I know, I love to go out and find stuff while I'm out too, but this year was different.  I couldn't go out to the big deals so I stayed in my pjs and rocked out on the computer.  I had to take a lot of breaks because I was basically window shopping on each site, but it worked.  This goes for those Mom & Pop places as well!  A lot of companies are offering free shipping over a certain amount, discounts on big ticket items, and there are a ton of buy one, get ones this year.  Be sure to start this now though to give yourself ample amount of time to get your items.
6.  Check out companies like Pampered Chef, Tastefully Simple, Thirty-One, Tasteful Treasures, etc.  Although the main company is large the sellers are your local friends and family!  They are earning money on all of their sales this season, so help them out buy buying from their individual site.  


In other awesome news, I was mentioned in the December issue of the MdDS Foundation newsletter which you can read here.  
Thanks to all of you for encouraging me to continue to write, even when I'm not feeling my best.  It was nice to be recognized in the newsletter, but most importantly, this blog is reaching more people everyday who are dealing with this syndrome or who have family or friends who are dealing with it.  It is getting the word out to doctors, therapists, loved ones, which is the goal.  Thanks again for all of the support!

"What a Wonderful World"~Louis Armstrong

I know there are two more days until Thanksgiving, but I've compiled my list of thanks this year.  Each day the month of November I had something I was thankful for, and I already know what my #21 & #22 will be so I'll go ahead and add them to this list.  Now, just because I stated it in the month of November doesn't mean that it starts or stops there.  I just pointed it out for Thanksgiving.  I'm thankful for every day for the life that I have.  I am thankful for being alive everyday.  I am thankful for having a wonderful God in my life, and having such a wonderful and personal relationship with Him.  I am thankful for love, and surprising to some I am thankful for heartache and pain, because from those I grow to who I am.  I am thankful for the sun and the moon, the mountains & beaches, the calm & the storms.  I am thankful for what I've been given in life.  

My list starts here:
Day 1: I'm thankful for my best friend, partner, teammate, husband Josh Ensley. For 8 1/2 years he's been at my side through good & bad times. Through everything, our love has grown stronger each and every day.

Day 2: I'm thankful go my baby brother who was born on this day. A little boy who I still remember sneaking in his room when he was a baby to calm him to a man who I love more than this world. I always knew i wanted a baby brother and im so glad that i got that wish. Happy birthday Jacessa! Big sissy loves you! .

Day 3: I am thankful for good friends and good fun.

Day 4: I'm thankful for two wonderful, strong, beautiful women in my life who know me better than anyone. We've definitely had our lows but we've had amazing highs that make us forget the lows. Or my biggest support team for the last 29 years, my best friends, my momma and little sister.
Day 5: I am thankful for my two beautiful kids. Growing up all I ever wanted to be was a momma and I am lucky enough to have been blessed with two. They are two awesome kiddos!

Day 6: I am thankful for my freedoms. My right to vote and have a voice. I am thankful for the men & women who fight for our freedoms and the right to continue to live the way that I do. I am allowed to be who I want to be and there is no one to tell me that I CAN'T do something, because I CAN!

Day 7: I am thankful for docs who can see patients on the same day because here I am with Seth with asthma.
Day 8: I am thankful for our teachers. Everyday they are overworked and underpaid. They strive to push the best out of our children. In addition, there are a select few that go above and beyond and make an impression that will last a lifetime. I know I have my few.

Day 9: I'm thankful for my aunts, uncles, and cousins. I'm thankful to also be an aunt and cousin. My family means the world to me and I'm fortunate to be very close to the majority of my family and excite to become close to the rest.

Day 10: I'm thankful for grandparents. I'm lucky enough to have 3 living grandparents and my kids are lucky to have all 4 of theirs in their lives. I miss my grams dearly and wish she was here to enjoy the babies but I know she I looking down watching over us. We have a rule that the grandparents are allowed to spoil the babies all they want without say from the parents and I love the smiles my kids have from all the love they receive.

Day 11: I am so thankful for those who have served and who currently serve in our military. Growing in Norfolk, you have a very unique appreciation for all of those men and women. You get to work with retirees, meet the moms and dad who take care of their families while the spouses are away, and literally hear the sounds of our freedom while jets fly over. Although I not technically a military brat, I am proud to say that my dad was a navy man, and numerous dads that I adopted along the way were too! I have cousins, uncles, and friends who have all served...so thank you! Anchors Away! Semfer Fi! Hoorah!

Day 12: Today I am thankful for my extended family. Those that I have adopted as part of my family. Sometimes water does run thicker than blood for me. 

Day 13: I'm thankful for my comfy bed and dvr. Days like today when symptoms are at their worst and back I killing me, I'm loving just snuggling up with my Lilybug and taking it easy

Day 14: I'm thankful for my coupon master, Anna Middlebrook, for teaching me the ways of the coupon. HAHA! Because of her I have a great selection of food for my family without killing our budget. Thank you oh coupon masta!

Day 15: I am thankful my ability to cook good meals for my family. From the ability to be able to afford groceries, to the electricity I use to cook those meals, to the time I get to spend with my kids teaching them how to cook, along with the time I spent with my family learning how to cook. I love being in the kitchen, and even though I have to wait for my body to allow me to stand long enough, those good days are my favorite days.

Day 16: I'm thankful for a brother and sister in law who gets us awesome tickets to hockey games. Love me some Admirals!

Day 17: I am thankful for dancing. I've started being able to dance again in little spurts on my good days. I love that my mom paid for my rhythm and grace with 15 years of dance lessons. Music pulls at my heart and moves my feet. I'm always one of the firsts on the dance floor.

Day 18: I'm thankful for my state of Virginia. We have all four seasons. Enough snow in the winter, cool breezes in the spring, warm beach summers, and gorgeous travels with beautiful fall trees. It's gorgeous here and I wouldn't want to live anywhere else. Virginia is for lovers and I love VA.

Day 19: I'm thankful for my MdDS meds. Days like today they are much needed.

Day 20: I am thankful for my support team. My friends and family who have dropped everything to help me when I needed it most, whether it is to go grocery shopping, run errands, pick up my kids, help me clean, or even listen to me vent on the phone. This year had been very frustrating but the support that I have receive is just amazing.

 Day 21:  I am thankful for my mom-in-law & and father-in-law.  I am grateful that I have such a great relationship with them.  I've always been able to enjoy their company.  I love knowing that they have accepted me for who I am.

Day 22:  I am thankful for life.  I am thankful that I was given life, and that I brought in this world the gift of life to my children.  I am thankful that I am given a new day to learn and grow and become the person I want to be.  

Being thankful is something that should be done everyday.  We should be grateful for what we have, not what we don't.  We need to take a moment to be grateful that we are here in this world, that we are given the opportunities that life has to offer.  Even those who have nothing have thankfulness.  So take a moment and find what you are thankful for.  Pass on that feeling to those around you. 

"Endtapes"~The Joy Formidable

I received a message from a woman named Holly, who asked if I would check out a page and answer some questions.  Its about learning more about someone and their chronic illness...so here goes:
1. The illness I live with is:  Mal de Debarquement Syndrome (MdDS)
2. I was diagnosed with it in the year:  2012
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: I'm no longer completely independent on myself
5. Most people assume:  Since I look & sound okay, that I'm okay
6. The hardest part about mornings are:  Realizing that nothing has changed and I'm still suffering.
7. My favorite medical TV show is:  Medical Mystery, The Doctors, and Dr. Oz
8. A gadget I couldn’t live without is:  My cell phone.  Its my life link if something were to happen while I'm home alone with my daughter.
9. The hardest part about nights are:  Trying to fall asleep.  I have insomnia some nights from the motion.
10. Each day I take _0-4 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: I continue to look for new treatments.  I've tried a few different things, but they have made no change or made me feel worse.
12. If I had to choose between an invisible illness or visible I would choose: visible. 
13. Regarding working and career:  non-existent.  I haven't been able to work since May.  I continue to train myself to be able to get back to work.
14. People would be surprised to know:  I have anxiety standing around people, even those I know, even my own family. 
15. The hardest thing to accept about my new reality has been: I can't do everything that I want to do.
16. Something I never thought I could do with my illness that I did was: Travel again
17. The commercials about my illness:  I haven't seen any.
18. Something I really miss doing since I was diagnosed is:  Driving
19. It was really hard to have to give up:  My job
20. A new hobby I have taken up since my diagnosis is:  Writing this blog :-)
21. If I could have one day of feeling normal again I would: DRIVE! 
22. My illness has taught me:  Take each day one minute at time. 
23. Want to know a secret? One thing people say that gets under my skin is:  Are you sure you can't work?
24. But I love it when people:  Have an open mind and ask questions without judgement.
25. My favorite motto, scripture, quote that gets me through tough times is:  I don't have a quote or motto, but music usually puts me in a better mood.  It relaxes me.
26. When someone is diagnosed I’d like to tell them:  You are not alone and its not all in your head.
27. Something that has surprised me about living with an illness is: Changing and adjusting how I do things around my house and with my family.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and little brother drove across town, bought dinner and brought it to my kids since I couldn't cook. 
29. I’m involved with Invisible Illness Week because:  I actually just found out about it, but I promote awareness as much as I can to this syndrome.
30. The fact that you read this list makes me feel:  Like people are becoming more understanding in what I am dealing with on a day to day basis.

Doing this list made me think a lot about my MdDS, and the thing with filling this out tells you how this affects me.  MdDS affects people different ways.  It is diagnosed each time by doing different studies and crossing off other diagnoses first.  I have learned that people have different symptoms that range on a scale from 0-9.  Some people go into a "forever remission," some have a short period of remission, and unfortunately there are those who never do.  Certain actions can exacerbate symptoms for some people while for others it makes their symptoms go away.  That is the reality of the syndrome.  So we need to continue to talk with one another, we need to be open and honest with our doctors and push our doctors to research this syndrome.  We need to stand for our own healthcare and not take no for an answer.  Invisible illnesses can be very frustrating, but we need to stay positive.  We need to support one another and continue to reach out to those who are willing to help us.  My goal is to get our information out to the public.  It will take time, but we will be recognized and information will get out to those who continue to suffer without a diagnosis.

Questionnaire from: Our 30 Things Meme

"Arms"~Christina Perri

I know I haven't written in awhile and that's because I kicked my own butt.
Last Thursday I had a great day.  I felt amazing.  I was only at a 1, so what did I do?  EVERYTHING!  I decided to work on a project of getting my room organized, which turned into also organizing the garage, fixing a toilet, and cleaning my room along with doing about 5 loads of laundry.  I was an idiot.  
I woke Friday hurting.  I messed up my back at some point and could barely move.  The tension in my neck caused a headache, which then brought on symptoms.  
Seth also had been sick the beginning of last week and was out of school, not returning until Friday.  We ended up having to change all of his asthma medicine and start every 4 hour breathing treatments.  Lets just say I'm worn out.
Saturday I was able to get out with my Mom and my son.  We had a good day, but I was exhausted by the time we were done.  We didn't mean to be out all day, but that tends to happen when my momma and I get out together.  
Lily went to her first Girl Scout camping trip.  She had such a great time and can't wait to go back again.  Hubby went hunting with my little brother.  This left Seth with me and momma, so of course he was loving the attention (just not all the shopping!)  He was spoiled of course, but that is allowed when the grandparents are around.
Sunday was set for just family time.  The kids and I hadn't seen Josh all week, so we made it a point to spend the day just the four of us.  The kids met their good behavior goals, so they were treated for the day.  Lily ended up with a new bear, and Seth decided on a new video game. 
This week I've been taking it really easy.  I haven't done much of anything but whats absolutely necessary (aka dishes, cooking meals, grocery shopping).  I've laid around the rest of the time, taking care of my back, my symptoms, and me period.
Today I got a little bit of mental medicine by going and seeing old friends at NSA.  I love my old co-workers.  I haven't worked there since the end of January, and haven't seen them since I was first diagnosed with MdDS.  I walk in and talking with them just feels like home.  I guess it has to do with working there for over 5 years.  My kids grew up in that office.  Heck.  I grew up in that office.  I was nice seeing old faces and just catching up, even if it was for only an hour.  I walked out of there feeling better than I did walking in, even though I was already feeling good this morning. 

"You put your arms around me and I'm home."~Christina Perri