Wednesday, May 30, 2012

Immigration Frustrations

When I went to the Philippines I handed over the large stack of papers to Arnold so that he can take them to the U.S. Embassy in Qatar in preparation for his interview.  There were a couple of things he needed to complete prior to taking his paperwork to the Embassy.


US Embassy - Doha


After obtaining his Qatari police clearance, completing his biometric testing and paying the visa fees at a local bank, Arnold was finally ready to take his paperwork to the Embassy.  On his first attempt to submit his paperwork, he was met with locked doors and a sign indicating that Embassy was closed for an American Memorial Day Holiday, even though it was Sunday and Memorial is celebrated on Monday. So it was very frustrating.  We had to wait two more days for his second attempt. Luckily, on his second attempt his paperwork was accepted; but we would need to wait for a call from the Embassy to determine the date of his interview.

Earlier today Arnold received a call from the Embassy indicating that he would need to obtain an National Bureau of Investigation clearance from the Republic of the Philippines. This is apparently different from a police clearance which is what we obtained when we were in the Philippines in March.  Due to the fact that Arnold will need time to obtain the NBI clearance the U.S. Embassy set his appointment date for July 23.  This means that it will be approximately September 1 before he is able to come to America as Arnold needs to provide his employer with a 30 day notice.


July 23


This has me thoroughly frustrated; but, unfortunately there is nothing we can do about it. Our hands are tied and we must continue to be strong while we wait for our time to come. I must admit that the wait is becoming challenging as I am very anxious to start life with Arnold by my side.  All of the hopes I had for spending a great summer with Arnold have been taken from me and I am powerless to change it. So for now I will wish the summer away and hope for an early fall.

Tuesday, May 29, 2012

Touched by Tragedy

For most Americans, the following story probably didn't catch your attention.  If it caught your attention, it only held your attention for a moment.   For the rest of the World, it is a sad news story.  For me, it brought me to tears and to my knees in prayer.  Even now, its hard to type these words without it bringing tears to my eyes.   Without further ado, here's one of the videos regarding this event.
This story is tragic and heartwrenching.  I can't begin to imagine the heartbreak being felt by the loved ones of the dead and injured. I am just so thankful that MY loved one was not among those killed or injured.  Arnold (Boyet) works in the Villagio Mall.  Thankfully, he and all of his co-workers are uninjured but knowing that this could have easily been him has shaken me to my very core.  The magnitude of this event has reached halfway round the world and has rocked my simple little Oklahoma life.  The pain of the families affected now resides in my heart and the pit of my stomach.  The tears of relief I have shed have morphed into kindred tears of sorrow.  I am a swirling mix of emotions and wish more than anything that I could just wrap my arms around my love.  Instead, I will just continue to offer up my prayers of thanks and to ask God to provide some peace for the families affected.

If I could ask one thing, it would be that you join me in prayer over this tragic event.  Nineteen have lost their lives, thirteen of which are children.  Those sweet souls deserve to whispered in God's ears during our prayers.

Thursday, May 24, 2012

“Summer Blogbuster” Laugh about Nothing

The following post is my addition to the Chiari Carnival #4 – If My Life Were a Movie.
Laugh about Nothing (2012)98 min – DocumentaryUntitled-5
Blogbuster11Ratings 8.8/10 from 131,712 users
Reviews: 386 users | 2 critics

Laugh about Nothing is a poignant and surprisingly witty documentary about a woman’s struggle with a rare neurological condition and her quest to find strength, peace and courage.
Director: Renee Gallop
Writer: Renee Gallop   
Stars: Julia Roberts, Boyet, Seth Rogen


Shalunya  ……………….….….. Julia Roberts


Boyet …………………..……..… Himself

Brendon (son)…………….…….. Seth Rogen

Dr. Roberts (neurosurgeon)  ..… Jon Hamm

Dr. West (general practitioner) … Reese Whitherspoon

Barbara (Mom) ………….…..…… Gena Rowlands

Arnold (Dad) ……………….……. Raymond J Barry


On a hot summer day in Oklahoma, Shalunya’s appointment with her doctor sets her life on a twisting path of pain and confusion.  Although, bizarre symptoms have plagued Shalunya since childhood, numerous doctors have been unable to decisively diagnose her.  Therefore, she sets off to live life in spite of her plight. She marries, raises a bright, witty son and deals with her symptoms as best she can.  Having finally found a place where she could be content with her situation, she unexpectedly finds herself facing a mysterious, rare condition with no known cure. The only treatment option is a risky neurosurgery. So, Shalunya prays for the best; but prepares herself for the worst.  Under the impression that her life would be ‘normal’ after surgery, she never suspected the barrage of symptoms that would crush her will to live. Her condition worsens and seeps into every aspect of her life. Rounds and rounds of tests and treatments reek havoc on her spirit. Turning to alternative therapies, holistic treatments does little to ease her debilitating symptoms. Divorced by her husband due to her inability to cope with the ravages of disease, feeling abandoned by her son’s departure as he embarks on his adult life, and being forced to quit her beloved job as travel agent leaves Shalunya’s home and heart feeling destitute.  Seeking to find peace through travel, alcohol, religion, and therapy; she ends up feeling lonelier than ever before. Just when she is at her lowest, she finds hope where she least expects to. On Facebook, at the poker table.   Boyet has an ease about him that makes it easy for her quickly befriend him. Yet, he is not at all her type.  He is foreign, quirky, uncomplicated and short; but his sense of humor warms her heart and opens her soul.  After a more than a year of playing poker and video chatting daily, she flies halfway around the world to meet the man with whom she has fallen in love. His simple way of believing that in life there are only two options, acceptance or rejection, opens Shalunya’s eyes to different means of dealing with her daunting situation. While he is showing her new ways to embrace life, she learns to talk about anything, pray about everything and laugh about nothing.
Frequently Asked Questions
Was Laugh about Nothing based on a book? It was actually based off a short story written about the actual events in Shalunya’s life.  The story is still available on her blog here.

How is it possible that someone can be thirty something before a birth defect was detected? Since it’s a birth defect, wouldn’t it have been found at birth? The two most effective ways to effectively diagnose Chiari Malformation is with an MRI or by posthumously examining the brain.  When Shalunya was younger MRIs were not prevalent; therefore diagnosis was not made until her first MRI at the age of 36. Although the structural deformity is present at birth it may not cause symptoms until adulthood. 

Since ‘Laugh about Nothing’ is a documentary, are all events depicted in the movie accurate? Everything regarding Shalunya’s diagnosis and medical treatment is accurate.  Some minor details may or may not have been altered to enhance the storyline. Why are they called ‘zipperheads’? The scar caused by the surgical decompression resembles a zipper, and since the scar is located on the back of the head they are lightheartedly refer to themselves as zipperheads.
User Reviews
Inspiring and uplifting. 15 May 2012
Author: BearlyBurnt from United States
It’s a beautiful story of a woman’s struggle to life courageously with a life long chronic illness.  It is a great reminder that the human spirit can reach deep within to find strength and fortitude for living a happy life in spite of such trying circumstances.

A triumphant story of a woman’s will to live. 13 May 2012
Author: April from United States
After facing one medical setback after the next, Shalunya’s world comes crashing down taking all her hope and faith along with it.  Then fate steps in and she is shown simple ways to restore her faith and reclaim her hope.  Once these things happen her heart opens, love and light shine thru every aspect of her life. This film restores my belief that we can overcome anything life throws at us.

Her resilience is captivating. 12 May 2012         
Author: Misty from United States
Watching Shalunya lose everything, her health, her job, her family, and her hope was a humbling experience.  I felt like I was right there with her as she lost everything.  Her journey back to a healthy, happy life while coping with such a challenging illness is breathtaking. Her conviction to regain everything she lost is inspirational.

Explore More About Laugh about Nothing
Shalunya's personal Chiari story
Chiari Support
Conquer Chiari
Chiari Carnival
Chiari Type One Malformation
Kyle's Chiari Malformation Battle
Zipperheads living with Chiari Malformation
Life with DisAbilities
Arachnoid Cyst Support
Day with Chiari
Living with Arnold Chiari Malformation

Saturday, May 19, 2012

Sunsets over Lake Eufaula, a pictorial post


Thursday, May 17, 2012

Botox for migraines: Update.

The first 7-10 days after Botox were full of headaches and migraines.  However, I had been warned that was a possibility while my body becomes accustomed to this new substance.  But after that initial period, I had a blissful week without any headache at all!!!! So I am thinking I have found my Holy Grail of migraine relief.

Unfortunately, my bliss did not last.  After lunch while sewing with my Mom I became so terribly nauseas. I went to lie down and things just weren’t getting better.  Before I knew it, I was tossing my lunch and I was in the throws of a brutal migraine.  I was never under the impression that Botox would completely rid me of my migraines.  But I had finally allowed myself to hope that I had finally found a treatment that would lessen the number of migraines and lessen the severity of them. 

I spent several hours in bed, but I was able to enjoy some of the evening. I am certain that before Botox this migraine would have sent me to the emergency room.  But I believe that the Botox was able to tone my migraine down to the point that my medications were able to work effectively. 
At this point I am still hopeful. I will continue to update my blog on how effective this treatment is for me. Since I have not found any other prophylaxis that has helped me, I am not certain what treatments could be left to try if Botox fails.

Wednesday, May 16, 2012

The quiet beauty of Lake Eufaula


Lake Eufaula in eastern Oklahoma is a large manmade lake that serves as host to my parents lake house ‘Burning Acre’ for twenty years.  
2012 Burning Acre1992 Burning Acre

The pictures above show the extent of the changes made over the past 20 years.


It’s a welcome reprieve with two large porches, a large boat shed, an outdoor fish cleaning station and a well manicured lawn.  We are blessed to have such a great place a short 90 minute drive from where we live.  It is a wonderful place to come and get away from the hustle and bustle of everyday life.


Mom and I both pack up our sewing machines and enjoy the opportunity to sew together while discussing life and reminiscing.  Miss Chloe, I am working hard to get this chevron quilt finished so I can send it to you.

But the real reason Dad works so hard on this place:



My Dad is an avid fisherman who molds and paints his own weights. He knows where to go and when the fish are running (in the picture above they break the surface).  However, he is usually outfished by his lovely bride. Go get ‘em Mom!


Dad’s Merc on his pontoon boat.  It was such a beautiful day to be out on the boat! It was a crystal clear day with calm water. It felt great to be out in the sun and it wasn’t too hot. The lake was calm and the sky was blue  It was a perfect day to be out on the boat.







I thoroughly enjoyed being out on the boat with my parents and enjoying the calm, clear day. Apparently, the fish were enjoying a lazy day as well; because, unfortunately, the fishing wasn’t so great. Fortunately for me, it was a perfect day to catch plenty with my camera.


As the sun starts setting my captain steers us back to the dock after a great, although unsuccessful, afternoon of fishing.  Thanks Dad for a great time

Wednesday, May 9, 2012

Staying True to Yourself

First and foremost, in staying true to yourself you must know who you are.  This requires that you take a long hard look in the mirror.  You must see yourself for who you truly are.  You have to be able to identify your assets and value; but you must also be honest about your liabilities and handicaps.  That is, of course, the harder part. You have to be completely honest about where your character lacks substance.  Make an effort to better the parts of yourself that are weak.
Next, you must practice tough love with yourself, unconditionally.  This means that you can hold your to a higher standard for your own good.  Tough love means that you are staying on track to be your best self.  Push yourself to take the higher road. Yes, its more difficult but its worth it.  Unconditionally means that when you do make a mistake you aren’t too harsh on yourself or that you don’t belittle yourself.  Everyone makes mistakes!  The real choice comes when we determine how we will react to the mistake we have made.  We need to take the opportunity to ensure that we learn the lesson to improve our future.  After all, we do learn more from our mistakes than we do from doing everything correctly.
images (5)
Think about how you express yourself.  Do your actions or your appearance speak differently than your heart?  You say that you are generous; yet, you don’t volunteer, you don’t donate, and you prefer to receive rather than give a hand out.  You say that you are open-minded; yet, you are judgmental about others, you are critical of habits or lifestyle.  Write or imagine a list of positive words you would use to describe yourself.  Now, when you do or say something negative think about which words you would need to cross off that list. How long would it take before your list were blank?  You must live every aspect of your life with integrity.  The same level of integrity, no matter where you are or who you are with. 
Be authentic with yourself.  This requires some deep soul searching.  When something bothers or offends you dig until you find the real reason you are disturbed.  If you learn that someone has said or done something you don’t like, take time to really investigate why this ruffles your feathers.  Is it their actions that bother you or could it be your reaction or perception that has you upset?  We cannot control other’s behavior and their behavior speaks to their character.  The only power they have over our lives is the power we choose to give them. Rise above and stay true to your own inner being.  Sometimes, there are instances when people in our lives hurt us or others we care about.  It is reasonable to become frustrated because of this. However, don’t take the opportunity to think or speak poorly of that person causing the problem, try to find a way to brighten the day of the one who was hurt.  After all, we can’t single handedly change the world or the people in it; but ,frequently, we can make a small difference which can effect big changes.
images (2)

Monday, May 7, 2012

A reason, a season or a lifetime.

It is said that people come into our lives for a reason, a season or a lifetime.  For some inexplicable reason that saying resonates with me today.   So I am going to take a moment to examine this statement.  But I am going to look at this backwards, if you will.
To me, being in someone’s life for a lifetime can only mean one thing: Family.  Your parents, your siblings, your grandparents. It could also mean your spouse and children.  After all these Adrienneare the people who color our lives.  Even though they may not always be the focus at the moment, these are the ones you can count on when the going gets tough.  For me, it does include my parents, my sister, my son; but it also includes two really important women.  By best friends, Adrienne and Robyn.  These two women are like sisters to me. They know me probably even better than I know myself.  Adrienne, on the left, I have known since we were ten.  Even though she moved away almost thirty years ago, our hearts are closer thanRobyn ever.  Her birthday is just a few days from mine, so there are so many similarities in who we are. I will never forget the day I met Robyn, on the right.  It was the first day of high school and we have been best friends ever since.  She often knows what I am thinking before I do. We share this bizarre ESP, I will call her and she will say, “I was just going to call you.”  It’s just this sense of knowing when the other one needs us.  Both of these ladies know my heart, my soul and my mind. They have been with me through thick and thin.  
Some of the people, who have been with me for a season include the neighborhood kids I grew up with.  They taught me a lot when I was younger and they fueled my imagination.  They were key players back then but I haven’t talked to any of them in over twenty years.  I would also say that my grandparents fall into this category.  I was never particularly close to any of them.  I did have wonderful relationships with both of my grandfathers and the way they responded to me was important to me.  My paternal grandfather treated me as if I were something truly special and my maternal grandfather allowed me the opportunity to see myself through his eyes.  Both of these men have led me on a spiritual journey; even though they probably never even knew it.
Some people have been in my life for a reason but are now no longer active participants in my life.  At the time, their departure from my life may have seemed catastrophic but now I see that their purpose was fulfilled.  The first one that I can remember was Mr. Payne, my childhood next door neighbor who was a minister.  His wife was the first person I knew personally that passed away, I was about 8.  Shortly after she passed, I had a conversation with him.  I asked him tons of questions about life, death, Heaven, and dying.  He was very calm and forthright during our conversation.  He explained dying like it was a beautiful, magical event that all of us someday get the pleasure of experiencing.  It was his words that I revisited prior to having neurosurgery.
There are plenty of others who have been in my life for a reason or a season.  I would like to think that I am now old enough to understand that everyone in our life serves a purpose.  But when those difficult people come along, I tend to forget that they are here to teach me a lesson or maybe they are here to learn a lesson from me.  I tend to forget that part so easily.  I let their anger or frustration get inside me and it becomes part of my day.  They become a convenient excuse to allow myself the opportunity to become miserable for a moment.  So I am now really trying to focus on allowing myself to be open to their positive message or to open myself to be a positive message to them.  
So I ask you my dear reader, how open are you to receiving a positive message from a difficult source or being a vessel of positivity to a negative source?  Can you now see a reason for a particular persons being in your life where you couldn’t before?

Friday, May 4, 2012

One Year Ago

One year ago today
I packed my bags,
For a journey unknown,
Butterflies set flight,
As I travel alone.
I board the plane,
My destination clear,
As the story unfolds,
Its ending, I fear.
The hours spent lost,
Deep in my thought,
With a hopeful dream,
Happiness I sought.
What lies ahead,
Only time will tell,
A happy beginning,
Or in misery dwell.
My heart beats wildly,
The plane touches ground,
Now discover I will,
If my future I've found.
From the plane I step,
Into warm island air,
As I begin searching,
My heart is in prayer.
In a crowd of faces,
Faith, my silent plea,
My fear evaporates,
When his face I see.
Anxiety now soothed,
Smiles beaming bright,
The first touch is magic,
Our future is bright.

Wednesday, May 2, 2012

What's in a name?

My blog always seems to be ever evolving.  In the past I have struggled to find a home for my blog and now it seems that I am struggling to find a name. At first, I just added: Living with Chiari, Loving across miles, Creating for therapy to my Life on Skype name. I have even changed the pages across the top of my blog to reflect this change.  I have gone through all my posts and listed them on each of their separate pages. That way anyone can easily find the posts about Chiari, the posts about my love with my adorable Filipino fiance who is immigrating to America or the posts about all the crafty things my creative, crazy brain makes. 

Life on Skype
Shalunya & Boyet

But I have now decided to just go with Shalunya & Boyet.   Part of the reason for this change is that I knew Life on Skype would never be permanent.  After all, Arnold is immigrating here; therefore, I won't always be living on Skype. I don't want to use Chiari in my title because I try to remind myself that Chiari is just part of who I am, not all of who I am.  

"Shalunya" - [sha-loon-ya], noun, origin - Russian 
Naughty little girl who belongs in a corner, mischievous little girl who gets in trouble

"Boyet" - [boy-et], noun, origin - Filipino
Name by which my fiance is called by his entire family

Since I am trying to build readership for my blog my brand must become clear.  Now this is just a personal blog, I am not really a 'brand'.  But I need to be sending a clearer message in order to find more readers that aren't related to me.  First and foremost, this blog is just about my personal life and the things that are important to me. So it will never be pigeonholed into any one category.  But I do want to make it easier for my readers to find the information they are looking for. 

I have starting a Facebook page for my blog and this is what inspired my name change.  Since I knew that Life on Skype was never permanent I did not want to list my permanent name on my Facebook page as Life on Skype.  Adding all that extra stuff just seems verbose; LIFE ON SKYPE: Living with Chiari, Loving across miles, Creating for therapy. 

{Conversation in my head} Quit being so flighty. But my name needs to reflect who I am. Says who? You could call it 'Crazy' cause that's what you are. Well, true. I know that but I don't want to convey THAT message. Seriously, you just need to pick something...anything! But it needs to be meaningful. It needs to make a statement. The only statement that you are making is that you can't make up your mind. No, I never intended to make that statement. Just decide and stand firm. You can do this. 

Shalunya & Boyet

So this is what I have firmly decided.  After all, Boyet is a much larger part of my life than Chiari or Skype or being creative.