Living With An Invisible Illness: Behcet's Disease

I don't talk about this much, but maybe the following list will help you understand what I've been dealing with lately and why I'm too exhausted to write much or socialize.

 21 Things About Behcet's You May Not Know:

1. The illness I live with is: Behcet's Disease
2. I was diagnosed in the year: 2011
3. I've had symptoms since: 2007
4. The biggest adjustment I've had to make is: Working less, giving up social activities, spending my fun money on health care
5. Most people assume: I'm lazy or depressed, not sick
6. The hardest part about mornings are: Waking up.  It's almost impossible if I do not get at least 10 hours of sleep.  Also, joint pain is worse in the mornings and it takes awhile for the stiffness and swelling to decrease so I can stand up straight and walk without a limp
7. The hardest part about nights are: Finding a comfortable sleeping position and dealing with the constant itching which increases at night and often awakens me.  I frequently scratch so deeply that I bleed and end up with scabs all over my legs, arms, torso and shoulders
8. Each day I take ___ pills and vitamins (no comments please):  On an average day I take 4 prescription medications and 3 vitamins, but if I'm experiencing a flare I take an additional 2-3 prescription medications
9. Regarding alternative treatment: I am very open to alternative treatment options, traditional medication has not offered me much hope or relief.  I am also researching the role of diet and hope to determine if some of my symptoms can be controlled by eliminating certain foods
10. Regarding work/career:  This has been extremely challenging for me and my boss.  I used to be so dedicated to my job, worked whatever was necessary, poured my heart and soul into it, but now I simply cannot do it.  I often find it difficult to work 8 hours a day, let alone more.  I am afraid it will cost me my job, which is upsetting because I have no one to help me with my finances, etc.  It's just me trying to support myself, cook, clean, pay bills, and heal this broken body and soul - it's getting harder everyday
11. People would be surprised to know:  That although the fatigue and pain are constant, the scratching is by far the most difficult symptom to manage as are some of the more embarrassing symptoms
12. The hardest thing to accept about my new reality has been: Losing life as I knew it.  I can no longer travel, I socialize very little and my weekends are reserved for resting - If I don't sleep several additional hours on Saturday/Sunday I will not be able to work the next week and will likely end up fighting a virus/fever/cold.....
13. Something I never thought I could do with my illness that I did was:  It hasn't happened yet because this is still too new for me, but I hope to get healthy, active and fit and then travel to Europe again
14. The commercials about my illness:  There ARE no commercials for Bechet's, most doctors have not even heard of it, let alone the general public
15. Something I really miss doing since I was diagnosed is: Enjoying a social life, working and playing hard, traveling to exotic destinations and exploring different cultures
16. It was really hard to have to give up: My social life
17. A new hobby I've taken up since my diagnosis is: Does sleeping count as a hobby?  
18. If I could have one day of feeling normal again I would: Play golf, paint my upstairs rooms, deep clean my apartment, cook dinner and dessert for friends and play with my nieces and nephews
19. Want to know a secret? It really gets under my skin when people say: Call me if you need anything.  Ha!  You would be so annoyed if I actually took you up on that offer because the needs are endless right now
20. Something that has surprised me about people's response to my illness has been: How quickly they walk away, quit calling or judge me for my inability to function like I used to.  It makes me really sad
21. My illness has taught me: How very weak and vulnerable I am, but although my body is weaker my faith is surprisingly stronger.  Perhaps because I have no on else to lean one and no illusions of being taken care of by anyone else but my Creator!

Dancing in the Rain

Several years ago, long before my Texas nieces and nephews cared about their hair or clothes, or whether they were cool or uncool, before the angst of adolescence settled over them, we used to dance in the rain. 

As the first drop fell we would excitedly run outside to twirl and dance in the grass, arms lifted, mouths open, tongues catching raindrops, all the while giggling and splashing with total abandon. It was glorious to play in the cool, refreshing shower and always left us giddy and breathless.  We would smile for hours afterward as we sat snuggled on the sofa, covered in beach towels, watching cartoons and sipping cocoa.

For those brief moments, I allowed myself to indulge in carefree spontaneity.  I would spin, laugh and totally lose myself in sheer delight, blissfully unconcerned with what anyone else thought.  It was a simple joy shared with kids who meant the world to me.  Of all the things I've done with them over the past 17 years, dancing in the rain is one of my most cherished memories. 

There's something healing and beautiful about a child's ability to enjoy the simplest things in life. Dancing with my nieces and nephews was the closest I've ever been to finding that ability in myself, to finding that innocent little girl of whom I have no memory all these years later.   

Lately there has been something stirring inside my soul, something unidentified trying to burst through my practical, reserved demeanor. I find myself yearning to dance in the rain again, both physically and spiritually.  I have no idea what it will look like, but I know I don't want to do it alone.  So if you're a brave, carefree soul and have any ideas, let me know and we'll find ways to dance with abandon, even if it isn't raining!

The Balance Beam

Once upon a time I was an aspiring gymnast.  Okay, not really, but I DID take a few lessons when I was a wee little thing.  I'm sure you can imagine the grace and skill I brought to the sport.  Ahem.

In all honesty, I was as terrible at gymnastics as I am at most sports.  Uneven bars?  TER-RI-FIED.  The  trampoline?  Convinced I was going to break my neck, although I outgrew that fear years later.  Uneven bars?  LET GO of one bar, fly through the air and try to grab the other bar? Um, no thank you.  Floor exercises?  I barely mastered a somersault, my cartwheels were crooked and roundabouts were ENTIRELY beyond my physical abilities.  Then there was the balance beam, the one thing I actually kind of liked and could obsessively practice almost anywhere.  The line in a parking lot became an imaginary balance beam.  The curb of a sidewalk was a chance for me to attempt walking on something narrow and elevated without falling flat on my face and breaking something. 

Sadly none of my practice paid off and almost 40 years later I'm still trying to master the balance beam.  Don't get me wrong, I can walk a straight line now and I don't (usually) fall off the curb; however, I do teeter back and forth when it comes to balancing the different responsibilities in my life.  It's silly because I don't have as many responsibilities as most people, which makes me feel guilty at how miserably I fail to balance what little I have.  No matter, consistency eludes me and I find myself repeatedly falling off the proverbial balance beam, trying desperately to put my life back together again Humpty-Dumpty style.  

It was easier when I was younger.  I was more driven and could push myself harder.  70-hour workweeks, 10-12 hours of BSF weekly, weekends full of social activities, volunteering at church?  No problem.  But now that I'm older not only do I lack the desire to push myself so hard, physically I simply cannot do it.

Years of not taking care of myself has led to some health concerns that keep me from living as actively as I once did.  My body is tired from years of see-sawing back and forth.  Will I treat it as a temple today?  Or will it better resemble the local garbage dump?

I was doing so well this time last year, but currently things are completely unbalanced in my life, again.  I find myself working late, neglecting my health and generally trying to do more than my body can handle.  Perhaps I'm in denial that this annoying auto-immune disease has taken up residence in my body, but it has and I must learn to deal with it so I can live a more peaceful life, not to mention regain my health.

I'm hopeful that with prayer, determination and rest I will regain the precious balance I've been missing lately.  If you struggle with balance in your life, then I hope and pray you find it.  On the other hand, if you've mastered the skill, can you please teach me?  I'm a little desperate!  ☺     

One Tear at a Time

One tear at a time

Fear

One tear at a time

Agony 

One tear at a time

Anger 

One tear at a time

Grief 

One tear at a time

Relief 

One tear at a time

Comfort  

One tear at a time

Hope  

One tear at a time

Faith 

One tear at a time

Forgiveness 

One tear at a time

Redemption 

One tear at a time

Mercy  

One tear at a time

Beauty 

One tear at a time

Peace 

One tear at a time

Grace 

One tear at a time

Restoration  

One tear at a time

Healing

Robin, a survivor

January 2010

Benched

• Proms
• Engagements
• Wedding showers
• Weddings
• Marriages
• Baby showers
• Babies
• Childrens' birthday parties
• Parenting

Just some of the ways women bond with each other.  All things I've never experienced and probably never will.  

Forgive me for whining, but today it is simply too much.  I feel left out.  Like my attempts on the field were so pathetic that the coach benched me; with no hope of me ever being good enough to even qualify as a last resort.  

On days like this, all I know to do is have a good cry and then try to count my blessings; to try and remember that I have a good life now:

• I'm happy - usually ☺
• I have amazing friends
• Family members who love me
• A good job
• Material possessions
• Travel experiences to die for
• Deep faith

The list is endless.  But it can be tricky to learn how to balance the blessings with the sadness and disappointment; the overwhelming loneliness; to own the reality of my losses while celebrating the wealth of my blessings.  

Maybe the answer is to create my own milestones and  celebrate them even if they don't make sense to anyone else.   Turn the mundane, ordinary and boring events into blowout parties!    

• Instead of a wedding shower - a housewarming party
• Instead of a baby shower - a puppy shower (which DID happen thanks to Cyndi and Dee at work!)
• Instead of a graduation ceremony - a party when I pass my CPC exam (IF I do!)

I'm sure it sounds silly to most of you, but it sounds like a lifesaver to me; a way to make my sidelined life worthy of celebrating, even if it's different from what I've always longed for and been repeatedly denied.  

I don't pretend to know how God works or why He does things so differently from my expressed wishes.  But he does and that's all there is to it. 

Learning to accept what I cannot change brings me into a deeper relationship with him and purifies me in a way that getting everything I want could never do.  I am learning how to appreciate that, but honestly I wish it weren't so painful.... 

So now, you'll have to excuse me while I open a new box of Kleenex, blow my nose for the 278th time, and then start planning a ridiculous, frivolous party, for no reason other than I am alive and kicking!  

 

God's Smile

• Earthquakes
• Tsunamis
• Riots
• Terrorist plots
• Economy
• Child abuse
• Murder
• Betrayal
• Politics

This world is in chaos and it's easy to let myself get caught up in the devastation I see around me. Then when I look at my own life, I have to fight to not be overwhelmed with disappointment. Many things are MIA. Things I wanted dearly have been replaced by withered hopes, unfulfilled longings and empty arms.

Just when I think I can take NO MORE.........

God smiles. 

(happy sigh)

Proof: I am incomprehensibly blessed with an abundance of friends who love me more than I deserve.  Friends who share life with me, even when it's messy. Friends who fight for me and let me fight for them. Friends who laugh with me, cry with me and share burdens with me.  Friends who need me and let me need them.  Friends who spoil me with time and attention.  And last week, friends who spoiled me with physical gifts on top of it all.

• Lunches
• Dinners
• Movies
• Concerts
• Art
• Giftcards
• Phone calls

All proof that God still smiles even when things look bleak.  Thank you friends for reminding me of God's grace and love toward me.  I hope I can do the same for you! 

Forgiving on a Sliding Scale

I have a new hero.  Her name is Eva Mozes Kor.  Her family of six was sent to Auschwitz during WWII.  Her mother, father and two older sisters all died in the camp.  Eva and her sister Miriam survived because they were twins, and Dr. Josef Mengele needed twins for his genetic experiments.  At 6 years of age the girls were subjected to horrific torture in the name of science.  The man known as the Angel of Death visited her daily, but failed to kill her body or spirit. 

As I watched a documentary about her life, I was struck by her ability to eventually forgive those who tortured her, even Dr. Mengele.  One statement summed up her entire outlook: "There is a lot more to my life than Auschwitz. I don't think about it every day, but it has changed my life forever." 

My own life has been fraught with pain and trauma, most of which I kept locked inside for almost 40 years.  Like Eva, there is a lot more to my life than my past traumas, but they definitely changed my life forever.  And although my experiences pale in comparison to hers and those who survived the Holocaust, genocides, wars and various other forms of torture throughout the centuries, I've struggled to forgive the people who stripped me of my innocence, of my ability to enjoy a carefree childhood, of who I could have been.

forgive [fəˈgɪv]

vb -gives, -giving, -gave, -given
1. to cease to blame or hold resentment against (someone or something)
2. to grant pardon for (a mistake, wrongdoing, etc.)
3. (tr) to free or pardon (someone) from penalty
4. (tr) to free from the obligation of (a debt, payment, etc.)

I am capable of comprehending the various definitions, but I still find myself wondering.... What does forgiveness really encompass and how do I apply it to my life?  How do I protect myself while forgiving those who have wronged me? How do I forgive those who don't want my forgiveness, or those who aren't even sorry? How do I forgive the criminals when I cannot forget the crimes? How do I stop resenting someone from wounding me without denying the existence of the wound? Can I ever trust someone again after being betrayed or hurt? The only answer I have right now is: I don't know.

Oh, I find it easy to forgive minor hurts and insults. Who cares if someone cut me off in traffic, gossiped about me, spoke harshly or generally slighted me? I have an abundance of grace in those instances. But cut me just a little deeper and suddenly I'm doling out forgiveness on a sliding scale.  The deeper the pain the less forgiveness I can muster. 

One of the most practical definitions I've heard is this: forgiveness is giving up my right to hurt you for hurting me.  I'm not there yet.  There is only one person I know who completely understands all of what forgiveness entails.  He knew that forgiveness is active and painful, but he faced it head on because he loved whom he loved (me) more than he hated what he hated (my sin): Jesus Christ, the most holy Son of God is my ultimate hero. Oh how I wish I were willing to love my offenders more than I hate what they did to me. Not just because I want to walk in obedience, but because I want to be filled with grace and mercy for my fellow travelers. I am finding that the road to forgiveness is paved with stones of humility. I must first recognize my own ability to wound and devastate others and seek forgiveness from Christ before I can offer it in return.  Only then can I forgive without reservation.

I know that I will always bear the scars of my wounds, just as Christ did, just as Eva Mozes Kor does, but I pray that those scars will not stop me from sincerely loving and pouring myself out to others. There are those who choose to live as victims forever, who stay in their own private Auschwitz, never finding freedom, peace and joy. They rot from the inside out, full of resentment and anger.  And then there is someone like Mrs. Kor who realized that physical freedom from the Nazis did not bring her freedom from the pain, she only found that when she forgave her tormentors.  

Obviously I have a long way to go in my understanding of forgiveness, grace and mercy.  I don't know much, but I do know a few things:

• Forgiveness is a process - it took Mrs. Kor 50 years!
• Forgiveness is not a denial of the truth
• Forgiveness does not erase the past
• Forgiveness does not deny or belittle the traumas we endure
• Forgiveness does not mean the offenders escape justice

Hopefully as I continue my pursuit of truth, God will grant me the ability to freely offer the same forgiveness I have been given. 

Emotional Stutters

There's a beautiful movie out now called "The King's Speech".  Last night it won four Oscars, two of which included best picture and best actor.  It was so well conceived, produced, directed and acted, and I was so completely immersed in the story, that at times I forgot it was a movie.  Colin Firth WAS the stammering King George VI.  It was thrilling to finally watch him succeed and unite Great Britain at the start of WWII.

Stammering, or stuttering as we sometimes call it, is unfamiliar to me.  I don't struggle with it personally and I'm not sure I know anyone who does.  It shocked me to feel such intense heartbreak as I saw the toll the King's stammer took on him and his family.  A stammer crippled him emotionally because he could not articulate the words his mind so desperately wanted to say.  That hit home with me.

Although I don't struggle with a physical stutter, I definitely struggle with an emotional one, or several, at times completely incapable of saying what I want or need to say, no matter how important.  People with a strong opinion or a voice of their own used to terrify me because I spent so much time trying to be whomever everyone else wanted me to be.

Perhaps my inability to find my emotional voice is why I identified so strongly with the King.  We were both silenced by our respective stutters.  Like the King it took a lot of hard work for me to find my voice and learn to use it properly.  Also like the King, even with all that I've learned and the confidence I've gained, I still stutter a little when I use it.  But, practice makes perfect and I've had a lot of opportunities to practice lately!  Maybe as I continue to acknowledge and accept the reasons for my emotional stutter(s) I will experience deeper healing, which will inspire me to keep practicing so that others will no longer notice my awkward voice.  Until then I'll memorize the words to Helen Reddy's famous song:

I am woman, hear me roar

In numbers too big to ignore

And I know too much to go back an’ pretend

‘Cause I’ve heard it all before

And I’ve been down there on the floor

No one’s ever gonna keep me down again

Oh yes, I am wise

But it’s wisdom born of pain

I’ve paid the price

But look how much I gained

If I have to

I can do anything

I am strong (strong)

I am invincible (invincible)

I am woman

Partial lyrics to I Am Woman, Hear Me Roar

The View From The Top

Flying over Greenland April 2009

Now that I'm firmly planted at the top of the proverbial hill, I have to say that I'm actually enjoying it and do not plan on leaving for quite a while.  The ascent was painful and exhausting, the hill was steep and I was not always in the best shape for the climb.  But now, although my muscles are tired, they are stronger and all of the hard work of living and healing has finally begun to pay off.   The view is breathtaking above the clouds!

Several incidents this fall and winter reminded me of how quickly life can change.   My cousin drowned and miraculously survived; a 41-year old high school friend was killed in a tragic accident; my 30-year-old receptionist suddenly lost her 41-year-old-husband to a heart attack; a former co-worker overdosed and is on a ventilator, not expected to live.  Those split-second tragedies made me more determined than ever to absorb every detail of my life, live every day to the fullest and embrace what I've got before it's gone.  I don't want to take my health, my job, my friends or my family for granted.  I don't want to miss important moments because I'm too self-absorbed to be fully present for others.  If life is like hiking then I know that the descent will be much faster than the ascent, so I'm hanging on to experience every second of a fast and furious ride! 

The greatest thing about reaching the top of the hill is the way it has changed my perspective:

• I've stopped letting others' failures against me define me negatively
• This was huge for me.  For years I simply tried to stop any one's failures against me from impacting me in anyway, but ignoring the crimes, and I do mean crimes, against me meant that I had to deny a lifetime of experiences and how they shaped me.  Since all experiences define me to some extent, I'm intentionally looking for the beauty in the pain.  It has made a world of difference and let me grieve my wounds while emerging from the process stronger, kinder, gentler and more compassionate.  God is miraculously making something beautiful out of the evil.   
• I now understand the difference between arrogance and confidence and the latter has become like a  second skin, at least most of the time!  ;-)
• I am MUCH more comfortable in my own skin and no longer feel the need to pretend to be someone I'm not.  I shattered the mold others kept trying to force me into and it was the most liberating thing I've ever done  
• I'm taking advantage of the fact that I live in a country where a woman can spread her wings and pursue an education even if she never marries or has a family.  I am going back to school.  Phase 1 has begun and I am in the beginning of an 8-month professional certification course.  Phase 2 will begin in the fall when I begin work on my Bachelor's degree - God-willing.  I'm nervous but excited and proud of myself for finally overcoming my fears related to college 
• It's important that someone in this world need me and depend on me, even if it's just an adorable little Yorkie named Zeus! 
• My faith is my own.  It's strong, deep, rich and alive and I wouldn't trade the intimacy I've found in my relationship with Christ for anything in this world

Looking forward to enjoying this view for a long time to come! 

11 in '11

GOALS: 11 in '11

1. Go to more movies IN THE THEATER (use those 50% off coupons!)
2. Try a new restaurant each month
3. Eat more Indian food
4. Cook a new recipe every month
5. Earn my CPC certification
6. Try one new bottle of wine each month
7. Spend more time with my nieces and nephews
8. Enroll in school
9. Go to a museum each month
10. Love my friends and family with abandon
11. Play more!