Friday, April 30, 2010

Living in the dark………

So what’s a girl to do when she is halfway around the world, she is alone, she has no car, knows almost no one and has just had the electricity turned off? I lay in bed at 800am staring in disbelief at the lack of blinking lights on the internet modem. Really it was the lack of any lights on the modem. I had been chatting with two different friends online and suddenly they were both gone. I guess I should say I was gone from them. I soon discovered that I would be spending the entire day without power. So here is what a girl does when she is without electricity for the day in Korea.
I take a shower by booklight; if not it’s pitch black in the bathroom.
I open the heavy curtains to let the light in and read a great book by a wonderful Irish author that I happen to know.
I certainly don’t watch TV and I had borrowed some great movies from the library!!!

I wash a few dishes by booklight because without the light it’s just too dark to see!!

IMG_0250It dawned on me as I was painting my nails fun colors that living with chronic illness is kind of like living in the dark. You know that this condition is there but you can’t see it. You stumble around trying to figure out which way to turn next. You think you might be going the right way but then you bump into a large piece of furniture. It feels like you are so alone even if someone is in the room with you. You certainly can’t find your way out as there are NO exit signs. What’s a girl to do? Have faith in what you can’t see. After all, it’s not about finding your way out. It’s learning to find the furniture so you can still dance in the dark!!
Quote of the moment: When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly. ~Patrick Overton

Just words………

My heart weeping
My soul torn
Lyrics in whisper
Dawn new morn
My mind twisted
My spirit free
Melody in breath
Confusion in me
My being tousled
My body wakes
Harmony in longing
Stability now shakes
My life shifts
My dreams fly
Rhythm in promise
Winged Angels sigh
My head knows
My wishes dream
Music in breezes
Forest Oaks scheme
My yearning sings
My musings long
Chorus in hunger
Wild passions song
My desire bursts
My urges burn
Refrain in shadows
Winds soon turn
My reality shattered
My existence ripped
Song in discord
Fantasy now stripped

Monday, April 26, 2010

Making friends with pain………

So, you have found yourself with a new constant companion…..pain.  It’s like you woke up to find that you’ve got a new BAD boyfriend.  You know the kind, very demanding, always needs to be the center of attention and doesn’t give your needs any thought.  This new ‘friend’ is incredibly rude. He’ll interrupt your day anytime he gets the urge.  He’s very inconsiderate; he doesn’t care if your sleeping or if you have plans with someone else.  He won’t take the hint; he doesn’t understand subtly. You would really like to ditch him; but, he never seems to leave for long.
Unfortunately, the prospect of kicking him to the curb isn’t a reality.  So what’s a girl to do? Well, you’re only option is to get to know him WELL.   You should get to know him very well.  After all, he is now intimately involved in your life.  Welcome him in as part of family. 
  • Recognize that no one lives a pain free life. Everyone experiences pain.  There are merely different levels of pain.  Some are just given more than their fair share. My ‘healthy’ sister called when she had a thumb injury.  She asked me how I lived everyday with pain.  My answer was that I accept it as part of my life. For me, pain just IS. 
  • Stop asking, “Why Me?” That’s an unanswerable question. No one can tell you why you were blessed to get your particular condition.  Yes, I said “BLESSED.”  Start asking “Why Not Me?”  What do I have that makes me a good candidate for teaching others?  How can I make a difference to someone else suffering?  What am I teaching my children about overcoming adversity? When you start seeking those answers, life will blossom. 
  • Realize that pain is just another sensation.  There is hot and cold, hungry and full, rested and tired, angry and serene, and comfort and pain.  It’s just part of the spectrum.  It does tend to be one of the longer, more frequent parts; but, it is always on the chart.  It’s more a matter of degrees of pain.  Is this pain bad enough to stop me from enjoying a movie?  Do I need to take more medication?  Could I go out and enjoy coffee with a friend?  Those are the questions I ask now.
  • Recognize that pain can be a helpful reaction.
    We know not to touch a hot pan; because, if we do it will burn us and it will hurt.   For me, head pain is a measuring stick.  If my pain continues to climb after taking medication to stop it, I should seek more medication.  If I ignore that pain, I will end up in the ER.  If I pay it the proper attention, it will go away.  I don’t allow myself the opportunity to say, “If only I had done _______ sooner.”  Frequently, this means everything else stops, so I can care for myself.
  • Don’t let guilt inflict additional pain. After 16 years I had to quit working. This set me into a major identity crisis. Who was I, if I wasn't a travel agent.  I decided that I was a Personal Health Specialist! Granted, it was my own personal health; but I had to have a title to feel worthy of being someone. Now, I've given up the title.  I don’t have to be anything other than ME in order to be happy.  Sick people have a right to find happiness and to enjoy life too.  Just because I enjoy an activity doesn’t mean I don’t have an illness, need help frequently, qualify for assistance or am cured.  Enjoyment produces endorphins which create emotional elation, stress reduction, improved immune systems, and decreased pain perception.
Pain will always be part of my life; it’s not going to break up with me.   I can’t run away from it or divorce it.   Since it is going to be such an integral part of my life, I might as well learn how to live with it.  Wait, I should say, I might as well learn how to live WELL with it or is that, in spite of it. All I know is that I can’t control the pain, the only thing I can control is my attitude toward it.
Quote of the moment: Although the world is full of suffering, it is also full of the
overcoming of it.   -Helen Keller

Friday, April 23, 2010

Visiting Korea’s DMZ………

I find military history very interesting.  So I jumped at the chance to go to the DMZ even if I had to go alone.  However, I realize that not everyone is as nerdy as I am; so, I am going to try to not bore you with a history lesson.  I will keep the facts to a minimum and post lots of pictures to ease the boredom for those that aren’t nerds.
The DMZ (Demilitarized Zone) was established to allow for border fortification between communist North Korea and non-communist South Korea.  It also aims to keep what could be constant skirmishes at the border to a minimum.  A few quick  facts.  The DMZ is 155 miles (250 km) long running the across the entire Korean peninsula and 2.2 miles (4km) wide.
A map of the DMZ depicting the JSA (Joint Security Area) where North Korean and South Korean officials meet for negotiations.  It’s also the area where North and South soldiers stand face to face with each other.  Taken during a briefing given to us by the U.S. Army.
The first stop on our tour was Imjingak Park, the place where many Koreans come to pay their respect for dead or missing family members from the Korean War. Freedom Bridge where 13,000 South Koreans re-entered their homeland after being held as prisoners of war. 
This makeshift memorial along the DMZ fence keeps civilians (even Koreans) outside the DMZ.  Only those taking organized tours are allowed access inside the DMZ.

Peace Bell at Imjingak Park. One can feel the heartbreak of an entire country ripped in two by a brutal war while visiting Imjingak Park. 
102_4987_2 copy
This was the most poignant moment for me; it literally brought tears to my eyes.  This group of Korean soldiers joined hands in a show of solidarity while walking through the monuments at Imjingak Park.

After some lunch of Popeye’s Chicken, we continued on to Observation Point Dora.
Perched on a hill, the binoculars at Observation Point Dora give a great view of North Korea which can be seen in the background of this photo.
Interesting note: Although you can use the binoculars to see over into the North, one is not allowed to take photos from there.  You must stay behind the yellow photo line when taking photos from this vantage point. 
A tour member snaps a photo by raising his camera from behind the photo line, while South Korean military guards stand watch.
Discovered October 17, 1978 Tunnel #3 was our next stop on the tour. On the left of this photo, you can see the slanting roof leading down into Tunnel #3.
We were told to don a hard hat before preceding 400 meters (equivalent to 4 football fields) into the tunnel. Tunnel #3 reaches depths of up to 150 meters below ground.  The above photo from Wikipedia as cameras are not allowed into Tunnel #3.
Over halfway into our journey into Tunnel #3 the spacious man made walkway gave way to a cramped stone tunnel.  At 5’7” I found myself crouching as to not bang my hard hat on the roof of the tunnel.  The tunnel is damp, chilly and not suited for those with claustrophobia.  Although, the North claims that the South dug this tunnel one can clearly see that dynamite holes were drilled from the North.  Photo from Korea Tourism Organization.

Final stop on our tour was Camp Bonifas, location of the World’s Most Dangerous golf course.   It' is only a 1 hole, par 3 course which is surrounded on three sides by minefields.  Photo from Golf Grader.
We were fortunate to be able to see the Military Armistice Commission building as tensions have been high between the North and the South.  In part due to a Southern Korean ship that was suspected to be sunk by the North.  The blue building to the left is the MAC building where the North and the South have negotiations.  The small cement curb between the gravel and the pavement marks the Military Demarcation Line between the Republic of Korea (South) and the Democratic People's Republic of Korea (North).
We could clearly see a soldier from the North who had initially been watching us through binoculars. It was a very odd feeling, especially after signing a form that indicating our understanding that we could be harmed or killed on this tour.
The North does things to antagonize the South. Such as, using the American flag from this display to shine their boots and the South Korean flag to blow their nose.  The North has also rearranged the furniture on the Southern half of the MAC building.  They have also walked barefoot on the tables in the Southern half which is a sign of disrespect. A footprint can still be seen on the table and cannot be removed through cleaning.

This South Korean soldier, who is standing in a modified Tae Kwon Do ‘ready’ stance, is actually standing in North Korea.  I, too, crossed the room and stood in communist North Korea.

We were then taken to Checkpoint 3 where we had an excellent view of the North Korean and ‘Propaganda Village.’  Given this name from South Korea because of the blaring messages from loud speakers praising the North and Kim Jong Il.  It is also been established that no one actually resides in Propaganda Village, although the North will deny this.  The flagpole seen in this photo is the World’s largest and the North Korean flag flying weighs over 600 pounds!!

Monument erected to the two American Soldiers slaughtered and mutilated with axes by the North Korean Soldiers during a routine tree trimming event. 

After the Armistice was signed, soldiers from both sides were returned to the Bridge of No Return.  They could chose to which side of Korea they wished to return; but, once there they were not allowed to cross back over into the opposing side again.

This is a satellite photo of both Koreas. It’s terribly eerie how incredibly dark it is on the North Korean side.  Only one solitary dot illuminated at North Korean capital of Pyonyang. Photo from Strange Maps.

Thank you for staying with me on my journey to the DMZ, I know this was a long post.  It was a moving experience for me.  It brought back fears from the Oklahoma City bombing, pride in my husband for helping to protect a proud nation, compassion in my soul for a nation ripped in two, heartbreak for amazing people working to rebuild their homeland, sorrow for the children born in the communist North and wonder that I was able to experience it all.  How blessed I am!

Thursday, April 22, 2010

Finding Peace………

I’ve been told several times that I am an inspiration.  But what makes me inspirational?  My son’s friends have all asked me for advice.  But what makes me qualified to give advice?  I’ve been asked how I seem so happy when I have so many things wrongs with me. So, what does make me really happy?
Now, is this a post to toot my own horn? Well, yes! It is; because, I am pretty amazing!
Ok, I am not really conceited; but, I have one amazing life.  In an incredibly brief synopsis, I was a wild child when I younger.  I have always lived life on my own terms.  I was married, had a child and was in and out of the army before I was 21.  I’ve had over 25 addresses since my 18th birthday.  Then at 36, life played a cruel joke and I was diagnosed with a rare condition that is actually an undetected birth condition. 
So, what is it that keeps me so calm in the midst of chaos?  Acceptance of who I am. 
I Am Not Defined by my:                               I Am:
Diagnosis                                                          Compassion for those who suffer
Job/Occupation                                                 Equal partner without a salary
Pain                                                                   Sharing what talents I have
I Am Not Defined by my:                              I Am:
Medical Record                                               Spreading knowledge
Fatigue                                                             Living out Loud, even from a sickbed
Procedures                                                       a Smiling face to those working on my body  
I Am Not Defined by my:                              I Am:
Marital status                                                    Blessed to feel love
Children                                                           Shaping a life
Possessions                                                      Graced to have what I need
     I Am Not Defined by my:                              I Am:

Friends                                                             Sharing my widsom
     Poetry                                                              Creating art
     Photos                                                              Spreading a vision
train 42
      I Am Not Defined by my:                              I Am:

      Health                                                              Determined to find happiness
      Bad Days                                                        Faith that tomorrow will be better
      Relationships                                                   the Love I share

      I Am Not Defined by my:                              I Am:

Internet Profile                                                  Empathy for my fellow members
      Words of Advice                                              Living what I speak
      Capabilities                                                       Beauty in every form
      I Am Not Defined by my:                              I Am:

Body                                                               Grace in the flesh
      Mistakes                                                          Joy in learning
      Fears                                                               Amazed by Life

I could probably continue this list for days and days.  I love reminding myself of what I can do, instead of saying what I can’t.  I love telling me about my talents, instead of focusing on my imperfections.  I would love to hear how you downgrade yourself and what you are going to replace it with.

Quote of the Moment: Everyone of us needs to show how much we care for each other and, in the process, care for ourselves. ~Princess Diana

Monday, April 19, 2010

Strange journey………

I’d like, if I may, to take you on a strange journey……….
Just stay with me…….
We had a lengthy walk yesterday at Enupa Park over some not so level terrain which is very trying for me since I only operate on a balance system that runs at about 25%.  I’ve been through balance rehab; so I CAN make a journey like that. It’s just a real mental workout since I have to solely focus on the ground beneath my feet in order to keep myself upright. It leaves me exhausted and with a good case of brain fog.
So last night, time for sleep, right? Should be tuckered after all that walking, right? WRONG! Just as I was going to sleep my nerves began to wake up. Uh, not exactly the best timing guys. Can’t you see I’m trying to go to sleep here? They obviously didn’t care.  Maybe I should up their salary?
Anyway, imagine with me that you are a famous movie star from years past like Audrey Hepburn in Breakfast at Tiffany’s.  You’re wearing long black silk gloves.
Now, you’ve realized your feet are cold. So you done some nice warm long wool socks.
Crazy, I know; but, just stay with me here.  Now, this is where things get a little tricky.  Imagine that both the gloves and the stockings are hooked up to electric lines at low voltage.  They both cause the tingly, itchy, painful feeling that you get when your foot, or whatever, part falls asleep.  The problem is that you can’t wake it up and you can’t take off the gloves or socks. Welcome to my world of neuropathy!  The condition is known as gloves and stockings syndrome and it’s not fun. Most times, it’s just a steady, low current.  Last night, it was wildly fluctuating and almost caused a panic attack.
I decided that panic was no good, so I got out of bed to play around on the internet. Just something to get my mind  off of it while the drugs worked their magic.  Finally, about 2 a.m. after drugs and a long hot bath I was able to get my system to settle down enough to find some sleep!
Quote of the moment:Peace. it does not mean to be in a place where there is no trouble, noise, or hard work. it means to be in the midst of those things and still be calm in your heart." ~ Lady Gaga

Sunday, April 18, 2010

More Blossoms……..

Take two, Enupa Park and the cherry blossoms.  Hoping that more had bloomed. I was in luck! This is the cherry blossom tunnel; obviously, in full bloom!!
Unfortunately, I forgot to call God and ask for a sunny day.  So, it was grey and drizzly.  However I won’t complain because the cherry blossoms were insanely beautiful. This is the cherry blossom tunnel from the other side of the lake. 





Well, now that I’ve bored you with a hundred pictures of the blossoms I will explain that there is a track that goes all the way around the Enupa Park, including all the way around the lake!! It’s a slightly cushioned walkway with exercise stations along the way. 
102_4919 I saw these bad boys in use too, in spite of the rain! No wonder Koreans tend to be so much healthier than Americans!!

We spied this adorable place on our way home from the park.  I know enough Korean to know that the writing on the rock says “sula” but I have no idea what it means.
And for my critter and friends, we now know where the video game store is in town. Brendon, send Momma some won and I’ll buy whatever you’d like! :-p

Quote of the Moment: Can’t Ship This is now stuck in my head!! ARGH!!! O merry, merry, merry, like only dogs know how to be happy and nothing more, with an absolute shameless nature. ~Pablo Neruda

Thursday, April 15, 2010

Ugly side of pain…….

Dark thoughts, pit of despair
Feeling lonely, nothing to share
Frustrations abound, stifling my air


Because I never allow it to show
how could anyone ever truly know
Intense pain’s low brutal blow 


I’d love to find  the hidden treasure
the joy of never needing to measure
the beauty of my pain-free pleasure


The challenges deep within my being
leave my bruised, battered soul fleeing
searching for health’s elusive freeing


My anguish displayed center stage
a massive captive in a tiny cage
too constricting for consuming rage


Monumental challenges abound
darkness sways and swirls around
enveloping angst makes no sound


Spirits don’t glow in darkness deep
from me passionate convictions seep
torment chokes, emotions weep

This poem is inspired by a screaming earache.  It’s definitely an 11 on a scale from 1 to 10.  I have taken vicodin and a toradol shot and I am beginning to feel nothing except my earache.  I am currently even wearing an earplug just because sometimes having a plug in causes a different sensation.  Thus making the pain seem less intense.  I will explain that I have been to a neurorhinotolaryngologist (neurologic ear, nose and throat doc).  I was completely tested and I have definite nerve damage in my ears. Luckily, it does not affect my hearing but it does cause pain, typically, daily.  Today is by far the worst day for ear pain that I have experienced to date.
I am not explaining this in hopes of soliciting sympathy.  I am merely defining the origin of the bleakness in this poem.
I certainly hope today finds my friends, loved ones, blog sisters, and sickmates (like cellmates only our only sentence is a diagnosis) healthy, happy and pain free. No humor, quote, or question…..can’t think in that direction at this moment.