A visit from my bestie.

Robyn and I met when we were 15 on the first day of high school.  I won’t bore everyone with the story of how she was late to every class I shared with her (3-4) and I thought she was a complete buffoon. Anywho, it’s 20 something years later and she is still as close to me today as she was back in high school.  Luckily I was able to make it back from the Philippines in time to spend the day reminiscing with her and remembering just how much I miss her.

 

This evening it was so much fun to go to a local bar & grill where another of our friends, Jamie, works. It was a great evening!

Several years ago God graced her with her handsome little boy, Hunter, who is just a charming guy who stole my heart!!

Nine months ago God gave her another little blessing, Chloe!

This little angel is the apple of Mommy and Daddy’s eye!!

 
She is such a happy little blessing and they are so graced to have her complete their family.

 

Now I wouldn’t want you to get the wrong impression that she has only this perfect little family. Remember every silver lining has its dark cloud. She does have to contend with this joker.

 

Just razzing ya Dave! Seriously welcome home!!!!! It’s good to see you and the family are together again.

Have a very safe journey, my friends.  Sending you all my love!!

Ides of Madness: Living with and overcoming maddening thoughts.

Having a chronic illness typically ensures that one will also battle depression.  Sometimes, the depression can become brutal and leave one feeling empty, lonely, and even angry.  It can creep up on you with stealth and poise or it can hit you like a ton of bricks. There are times when it can blow small problems out of proportion leaving one with a mountain instead of a mole hill. In any case, finding your way out of the madness and back to ‘normal’ can be a test of anyone’s character.  It’s in these moments where I have learned to find solace, center, and strength. 

It’s a situation I have been in plenty of times. It is a situation I find myself in at this exact moment even though I am on vacation with the man I love.  I want to scream loud enough that the entire World hears me.  I want to cry enough tears to fill the Mississippi River. I want to run away from Chiari, from life, and mostly from myself.  Unfortunately, I am not capable of doing any of these things. I must find a way through all of the crazy thoughts in my head in order to continue to live a happy and full life. 

I would like to take a moment to get real here, to talk about the things that no one wants to admit to.  These are some of my darkest thoughts and I don’t easily share them. 

1. I have often wondered why I survived decompression surgery.  If someone could have whispered to me during surgery and told me what the quality of my health would be like post surgery would I have ‘chosen’ to live?  I have experienced more pain, tests, depression, difficulties, and procedures in the six years since surgery than I did in the thirty six years before surgery.  It certainly doesn’t seem like a shining example of a great quality of life. So why didn’t I just die on the table?

2.  Frequently, I am angry that I have this stupid rare condition that people and doctors don’t understand.  It really pisses me off to have to explain to a doctor what my condition is and what treatments they need to use to effectively treat me.  I didn’t go to medical school because, frankly, the human body grosses me out.  Therefore, I have zero percent desire to learn about some obscure condition in order to become by own best medical advocate.  It’s not my job to practice medicine.

3.  Why can’t people understand that I am ‘sick’ even though I look ‘healthy?’  “Well, you seem like……..”  I loathe that statement.  Don’t tell me how things seem or how I look.  For that matter, don’t tell me how I should feel.  I don’t care if you think I should be grateful that I’m alive.  I don’t care if others are worse off than I am.  You have no idea what it is like to live with a difficult and complicated medical condition.

4.  Where can I go to get away from myself? I hate myself when the depression gets to me.  I realize I am not a good girlfriend, a good mother, a good friend or a good family member. I realize I am cranky, short tempered and pissy. I wouldn’t want to spend time with me so I can’t find any reason my loved ones would want to either.  Is it possible to become someone else and forget this evil bitch that has taken me over?

These are just some of the many thoughts that accompany this dark cloud that every Chiarian knows.  So what do I do in order to cope with these thoughts, in addition to, my symptoms?  How do I continue to find a reason to smile?  What are some simple solutions to appease these nasty beasts so that I can get on with life?

• Journaling – I write the things I dare not speak.  For me, it helps put them into perspective so that I can remember that my life is much greater than my difficulties. My only requirement is that I write honestly. I don’t care who it hurts because I am the only one who reads it.
• Music – Heavy metal when I am angry.  Gospel when I am depressed.  Happy, foot tapping music when I am sad.  Pop music for coping with symptoms.  I am a firm believer in listen to whatever soothes your soul. I listen frequently and rarely watch TV because it uses too many resources and leaves me with sensory overload. Music combined with rhythmic breathing is my drug of choice for coping with challenging medical procedures.
• Prayer/Meditation – It isn’t completely prayer and it isn’t completely meditation.  It’s my own personal blend of the two. I spend some time chatting with God like He is my best friend in the whole world.  He doesn’t mind that I am not formal with our talks.  I also spend some time reciting a mantra or clearing my mind of thought by taking a ‘mental’ vacation.  I go to the beach or a beautiful flower covered meadow. It doesn’t matter where it just matters that I am alone and calm.
• Talking – I have paid a therapist so that I could cuss at her.  I have been in group therapy.  Lately, I have discovered a wealth of resources that allow me to speak openly about what I am experiencing.  My fiancé is incredibly understanding, an online support group has provided a safe place to share my madness, and I talk to myself on my blog. 
• Reading – I escape into a whole different world with a good book, most recently The Hunger Games!  Placing myself deep into an interesting story can make me momentarily forget all that ails me.  It’s a good way for me to remove myself from my current situation and to surround myself with a new experiences.  Truthfully, when I am not with my fiancé, it is the only way I can clear my mind enough to fall asleep. 

These are just some of the things I use to help fight the negativity that comes with being chronically ill.  I realize that my thoughts can spin out of control and I often times struggle to get them back into perspective.  This usually causes my emotions to become overly sensitive, as well.  So I would like to cry or cuss at someone just for looking at me.    Most of the time, the majority of the people around me do not realize how often I deal with these thoughts.  But they are there.  My constant companions in life.  I have chosen to believe that, like an imaginary friend, they are real and they are usually hanging around nearby.  I don’t want to tell people about them for fear that they would want to commit me.  So I give them a nod and a wink to acknowledge their presence.  Then I go about my business of slyly finding ways to piss them off and to run them out of my life. So far, they always come back; but I am not yet ready to allow them free access to roam around my life. To all of my invisible friends that want to bring me down, watch out I’m stronger and better than you are.  I have plans on living a long, happy life. So you might want to start looking a new friend to hang around. I think I’m over you.

Technorati Tags: Chiari Carnival,Chiari,blog carnival,mental health

Less Than Picture Perfect

Now I would like everyone to believe that Arnold and I have a perfect relationship. I would like everyone to see our relationship as the perfect model for a successful long distance courtship. But the truth is that its not. Because, in fact, nothing is perfect. So today I think I will find the beauty in the imperfection or maybe I’ll just find a laugh or two.

Bad hair, weird pictures (taken by his daughter), and silly gestures make for an odd picture.

When the man has been bad he should be punished!   Or at least threatened with Tanduay Ice (similar to Smirnoff Ice but much, much better!) over the head! I am proud to report that there was no alcohol abuse and no Tanduay Ice was wasted.

This is one of those backdrops for souvenir photos but no one was manning the station so we gladly took a moment to take our own photos.  But for some odd reason, my intended and I sat on opposite sides of the volcano from each other.  Also, there is some weird inexplicable expression on his face. 

Weird angle caused by short photographer and the classic ‘over’ smile (you know the one, where you smile too big and it makes you look odd).

Frosting can turn most photos from a sticky situation into a funny memory.  However, this one is just a bit quirky.  I look like I am ready to cry in spite of the smile on my face and I can’t even really define the expression on Arnold’s face.

  

Not real sure why my dear darling took the opportunity to go digging for gold during this shot but it’s proof that our love isn’t always golden!

Don’t ask, I don’t know.  Maybe it was a case of ‘if you show me yours I’ll show you mine.’  Either way, it makes for a less than memorable photo.     




















These two are only funny when they are with each other.  They were taken seconds apart and it looks like we are in some sort of disagreement about something but I can assure you that wasn’t the case. I particularly enjoy Arnold’s expression in the photo on the left. That’s “Whatchoo talkin’ ‘bout Willis?" if I have ever seen it. If you are too young to remember Gary Coleman on Different Strokes, then I suggest youtubing it.

Last but certainly not least,  this one is a doozy! Arnold looks like is scolding me for something and I look like I am ready to punch him.  Neither of which are true.  If a picture tells a thousand words, I am just saying that this one lies. It LIES I tell you.

Splishing, Splashing and Swimming

The warm weather and clear skies make for a perfect swimming weather here in the Philippines.

Aena, Missy and Kianne.

My (soon to be) sister-in-law, Joy, and her daughter Kianne.

Even bright days can have a cloudy moments, Miss Bianca finds solace under the bridge.

All of the kids are enjoying the cool water on a warm day.

Such happy faces in smiling it up at the camera.

My (soon to be) brother-in-law, Chaminda, and his son, Jacey, who is very happy in the water.

Brendon swims with A.J. on his back while the birthday boy, Xennon, looks on.
It was a great day for a birthday party, for some fun in the sun, some videoke, and to spend time with the family! I am so blessed by this family they are an amazing group of people and I am so proud that my son has now also become part of the family too!

Don’t squeeze my melons

After our wonderful day at Tagaytay we stopped by the roadside fruit stands to sample and purchase some of their wares.

Everything is so fresh and so colorful!

 
I am certain that I could easily eat most of my meals directly from here.  Ok, truthfully I might miss the lumpiya too much to do that.

Arnold sharing the finer points of some local fruit.  The points were so well received that I can’t remember anything about what he said. I was too busy experiencing the TASTE!

 

Until this trip to the Philippines I was unaware that this existed.  It’s called a Jack fruit and it’s, ummmmm, yummmmy!

This was a definite BONUS on top of an already amazing day! Life in the Philippines is definitely SWEET!

Peoples Park

Peoples Park is further up from Picnic Grove at Tagaytay.  It affords some beautiful views of the surrounding area.  It was a shame that the weather was not cooperative and kept us from getting some really great shots.  But we enjoyed our time there none the less.

Arnold and I enjoyed this wonderful day spent together with our children.  We are so blessed that we were afforded this opportunity for our children to get to know each other.

Aena enjoyed her view from the “Palace in the Sky.”

Aena and Aeona enjoyed sending coins to the bottom of the well and making their secret wishes.

Who lives in a pineapple on top of the mountain?

 

Goofy Boyet Short Pants!!

     


This has to be one of my favorite pictures taken during our trip.  It leaves me with this impression that Brendon is on top of the World contemplating life’s very existence.  He is probably just thinking ‘nice view’ but a Mom can have high aspirations for her boy, right?

Playing in the Park

After Ziplining in Picnic Grove at Tagaytay we discovered a local park and enjoyed some time watching the kids climb around on the playground.   Aena bravely managed to climb to the top on this one.  However, once she reached the top, she couldn’t figure out how to get back down.  Dad jokingly says, “Jump!.”  Aena immediately says, “No! Papa!” He insists that she should jump but finally she discovers that she can easily turn around and climb back down the way she climbed up.

 

Aeona climbed all over the playground equipment. She tends to be very quiet and can move from place to place with such stealth one would suspect her of being a ninja.  It was great to see her running around with a huge smile on her face. :)

 

 

Brendon even took the opportunity to play like a kid again and climbed up on the monkey bars.  Once perched on top of them he did his best impersonation of ‘The Thinker.’  I can assure you that this is the most ‘thinking’ he did while on vacation.  While on the flight to Manila we met a lovely couple that told Brendon to “be amazed by everything.”  He has been able to allow himself to be amazed.  Luckily, he has taken it all in and has experienced daily life here in the Philippines.  It is such a blessing to be part of a family rather than just a tourist here. 

 

 

 

The greatest joy comes from being able to watch these two amazing young girls grow into beautiful young women.  My cup runneth over and I think I will allow myself to play in the overflowing of blessing from my new family.

Ziplining at Tagaytay

Tagaytay is host to Taal Volcano; proclaimed as “World’s Smallest Volcano!” It also has a FANTASTIC zipline! So we set out with the three kids to enjoy the day at Picnic Grove overlooking the Taal Volcano. It was so much fun even though the weather was cloudy and we couldn’t get any great shots.

My son, Brendon, and I were the first ones to brave the zipline.  Now, I will admit that ziplining is probably not on my neurologist’s approved list of things to do.  However the zipline is not at a steep angle so the ride isn’t very fast.  It was designed so that one could enjoy the views as they fly through the air. First and foremost, they strap you in really, really well. So you feel very secure even though you are laying there hanging from a cable.  For us ladies, they even strap your purse in with you so you don’t have to worry about where you are going to leave it while flying!

 

There is such a sense of freedom while flying.  For those few moments, I was not longer some girl with a chronic condition.  I was merely enjoying flying like a bird through the sky and over the valleys of the mountains. There was a cool breeze blowing from the Taal Lake and I had no worries. This experience is one I will remember for the rest of my life.  I am so grateful to be able to share it with my son, my future husband and his two beautiful girls!

Arnold’s youngest daughter decided that flying thru the air in a sling was just wasn’t her style whether on her tummy or sitting in the sling.  She wanted no part of it.  Therefore, we opted to take the family cable car over and since she was able to hang on to daddy she decided she could enjoy it. You can clearly see that by the huge smile on her face that she is truly enjoying the moment.  She doesn’t normally smile for the camera so this is a very precious moment.  You can also tell that we aren’t your typical family.  But our love caught us off guard and it’s changed all of our lives for the better. My blessings are great!

 

Farkle

Last year, I searched for something to bring for all the kids to enjoy.  I wanted something easily transportable and easy to learn.  Of course Uno was a perfect choice.  This year I looked again for a game that fit those criteria.  I had never played Farkle but I had heard good things.  It certainly fit the requirement of being easily transportable.

 

 

 

 

 

 

 

 

 

 

 

 

Technorati Tags: Farkle,Philippines

After dinner one night we busted it out, read the rules and the laughter began.  It’s an easy game to grasp and therefore you don’t have to get bogged down by the rules.


 

Farkle: It is a game of chance and a game of risks.