Mr. and Mrs. Do Nothing

“Do not confuse my bad days as a sign of weakness. Those are actually the days I’m fighting my hardest.”
– Unknown

I am the dud of every gathering.  I am the first to leave…if I show up.  When I am there, I am the person to get the most “Aww…”s followed by an awkward shift in body language and an obvious desperation to change the subject.

Don’t ask me, “How are you feeling?”  Don’t ask me, “How is your husband doing?” Oh, and you really don’t want to hear the answer to, “So how is your Dad doing?”

Chronic illness sucks.  It also sucks the life right out of parties.  I’m “that girl.”  The one to feel sorry for.

I’ve always been introverted.  Heaven is a pancake dinner in my pajamas, and I have always avoided social situations when I could.  But this is a new level of flakiness for even me.  Why?  Because I don’t feel good!

My husband, who I have written about in past posts, also doesn’t feel good.  For three years, his pain has become increasingly worse with no diagnosis yet.  It hurts for him to walk, to move, to not move.  It physically shows, so he hates going places not only because he feels like he is mimicking someone who just got hit by a car, but because he doesn’t feel like it.

I had my first chronic illness, epilepsy, under my thumb.  My medication worked.  Seizure-free.  I could exercise, and work long hours and take care of my husband.  Then my stomach was messed up…for a long time.  After a few months I got a diagnosis:  Ulcerative colitis.  This new chronic illness is not controlled.  My first course of treatment does not seem to be putting me in the Eden of UC patients:  Remission.  Focusing is hard, sleeping is nearly impossible and going places? My angry colon starts protesting with just the thought.

The Chrohn’s & Colitis Foundation of America has a walk.  My husband immediately signed us up.  Just trying to absorb the fact that I have an autoimmune disease, I was really upset to be diagnosed with another illness that has a walk associated with it.  But I followed the lead of my husband and parents and was very optimistic that I would feel better soon, and there so many worse diagnoses out there, etc.

We didn’t go to the colitis walk.  Why?  Because I have colitis and I didn’t feel like it!

So, we are that couple.  Birthday party?  Nope.  Fun gathering of intellectuals?  First ones to leave.  Froyo with my bro? Haven’t even tried.  We’re starting to not even make commitments knowing that they will more likely than not be broken.  I go to work, and the medication I am taking keeps the symptoms at bay for a nine hour work day, but barely.  On days when the meds can’t help, I have to call in sick.  When I have to call in sick, I feel like a complete failure, because I’m supposed to be tougher than this.  I’m also supposed to be happy and funny and optimistic and fun to be around.

I’m freakin’ PLEASANT, dammit!

My husband’s pain is awful in the morning and then depending on if its a “good” day or “bad” day, gets worse or lets him move around, sometimes even drive down the street.  My symptoms begin to alleviate in the morning then get worse in the late afternoon and then just keep me up all night.  Between the two of us, there is no good time.

Husband and I love our alone time, but we are also forsaking our ability to carry conversations with real, live adults.  Small talk is hard for me, and I worry my husband will only know the outside world through Facebook.  Talking with others who are living with chronic illness helps, but we still are the couple to feel sorry for because of our age.  We should be more active and have more friends.  We should be starting a family and taking Instagram photos on top of the mountain crest we just climbed.

Do I feel stronger for living with chronic illness?  I wish I could be flowers and roses, but this post is not about making chronic illness seem like a great asset.  No!  I don’t feel stronger, I feel like crap.  The physical crapiness is made worse by the mental anxiety of not being the best employee, wife, daughter, volunteer or friend.

So, we do nothing.  Some days are good, and we go out with family or run errands we had been putting off day after day, but most days are not good.  What can we do?  We can stay in our pajamas, cook a healthy meal and watch TV.  Glamorous?  No.  Productive?  No.  But Mr. and Mrs. Do Nothing are not celebrating chronic illness, we are living with it.  The best we can, day after day, and tomorrow may be good.  If it’s not, then we have each other, and the comfort of our marriage…and our pajamas.

And for that, I’m thankful.

My “Non-Wedding” Nuptials

Prayer Hands

“For this reason a man will leave his father and mother and be united with his wife and the two will become one flesh.”
— Ephesians 5:31

Husband and I met in October of 2005 on a blind date.  Unimpressed with one another, neither one of us could remember how we ended up on a second date.  But we did.  Chalk it up to a guiding hand.

Over the past seven years and 11 months, we have been tested by fire.  We’ve faced trials of unemployment, extreme financial stress, new jobs, relocations, health scares, deaths in our families and three breakups.  We know how blessed we are, we know we could have faced much, much worse.

Husband was there, rubbing my shoulders, comforting me when I felt completely alone and it all piled up and I collapsed underneath a real deal nervous breakdown.  When you are weighed down by so much grief and anxiety, your body forgets how to act normally and I felt I had lost all control.  The only times when I felt I could breathe easier were when he was holding me or I was in prayer.  These tests we have been through together have made us stronger, brought us closer, and have also stripped away our desires for anything other than a life together.  Just having each other has proven enough to get us through so far.

We were married by our family pastor.  He has meant so much to our family, as he baptized me and my father, has been a spiritual guide, and even married Husband’s parents 34 years ago.  He has comforted us in grief and loss and taught us to always “Go to the Lord in prayer.”  His wife was in attendance as well as our parents.  That was it.  No wedding party.  No guests.  No big dress.  No cake.  No band.  Just us.  Our parents were present to give us away as we started a new family.

I have absolutely nothing against weddings.  I think it is beautiful to declare your love in front of your family and friends!  We didn’t have a wedding for a few reasons.  First and foremost, we wanted it to be about the two of us, entering a sacred contract.  We wanted to focus on that, without being distracted by seating charts, timing the food, my hair, etc.  (I’ve planned and managed events.  I know I would have been distracted.)  I had that big wedding planned in my head for years, but after all this time, it slowly melted away, leaving me with one desire – to begin my marriage.

Second, weddings are expensive.  Husband and I want financial security and independence.  We want to live in our own house!  We want a savings account!  We have a lot of work and penny pinching ahead of us.  We know lean.  We’re tired of the stress.  So, even if we had a small wedding, and we started inviting close family, we would inevitably hurt even more feelings of those we love but did not receive an invitation.   I have been in those uninvited shoes.  Not fun.  So, for those who wrote me and addressed their missing invitation – Sorry!  We love you, we give praise because you are part of our lives, but we did not have an event to invite you to!  I got some nasty comments about not being invited.  I’ve also gotten so many well-wishes, that I feel overwhelmed with how many people are happy for us.  We are not letting people cloud our memories of what was a beautiful and meaningful moment between the two of us with a shadow of guilt.  We did not mean to hurt anyone!  Hey, my dress was $25 and my bouquet was donated.  I hope those that are hurt understand that we have been together enough time that we felt already married.  We have felt that way for quite some time now, we just needed to legalize it.

I sympathize with brides who have worked to make everyone happy, because it is an impossible task.  I have a small handful of people who are upset with us.  Over the years with my friends, I have witnessed so much stress and hurt feelings during the wedding planning process and the wedding itself.  If we had been married years ago, if we had a wedding budget and we actually planned a wedding, I would have been on Faux Pas #5692 before the time we exchanged vows.  I salute the women who plan their weddings, because I feel the added stress would have propelled me to Vegas to elope, which would have really made people upset!

Weddings with guests are about declaring your love and commitment in front of your loved ones.  Lee and I have declared such love and shown such commitment for almost eight years.  We’re pretty much old news.  That is the last reason we voted against a wedding. God knows our love for each other and we know it.  That has proven enough.  For that formal declaration not made in front of a full church….I write this – My friends and family know that  I dragged my feet for years, and while I was doing all that foot dragging, God was removing every opportunity that would pull me from Husband and adding lots of obstacles and experiences that would show how much I loved Husband and how much better I was when he was with me.  When the time finally came to say our vows, I felt no reservations, and I have never been more sure of anything.  He’s my best friend and partner in life.  I’m incredibly fulfilled and completely taken care of each day I get to spend with him.  I praise God for him, for I feel undeserving of such a committed and faithful man.

Our “non-wedding” nuptials were not due to selfishness, but honestly they were a reflection of our experiences during those tough times when it felt the world was collapsing around us.   Just having each other to hold as we prayed was enough.


“The Lord sustains them on their sickbed, and restores them from their bed of illness.”
— Psalm 41:3

Today marks another World Diabetes Day.

November 14th commerates the birth of Sir Frederick Grant Banting, one of the men who discovered insulin, saving millions of lives.  November is Diabetes Awareness Month, in which the diabetes community goes blue, or gray, or blue and gray.  The hope is that our neighbors to which diabetes is foreign will learn something about a disease that impacts hundreds of  millions worldwide, each one differently.

Just keeping up with what is new to learn in diabetes is a full-time job.  (I almost kind of sort of have that job.)  Each person living with diabetes has a unique perspective, a perspective that must be respected, because only one person knows what diabetes is.  It’s their enemy, it’s their greatest motivator, it’s their burden or its their success.  Learning about what diabetes means to different people living with it or caring for someone living with it, has became an ever increasing focus of creating awareness.

This month is also Epilepsy Awareness Month.  I know remarkably little about my own illness compared to the information I have accumulated on diabetes.  In fact, I know few others with epilepsy, enough to count on one hand.  I have more friends with diabetes than I do without.  I know my epilepsy as best I can from tests and discussions with specialists.  I know my epilepsy from how it impacts my daily life, how it impacts people’s opinions of me, and I am quite aware that it could be worse.

This month also marks new types of awareness for me.  I am now more aware of Parkinson’s.  My father was recently diagnosed with a disease I knew absolutely nothing about.  Search by search, I am learning more, becoming more aware, learning about our next steps.  I was also woefully in the dark about cancer, until my sister’s recent diagnosis sent me searching for information.  Information filled with very long words for complicated categorizations, treatments and stages.

At this point, I’m becoming tired of becoming disease aware.  It’s a lot of awareness to take in.

Through the health obstacles I know, all the new ones to learn about,  I found a deeper awareness.  I am more acutely aware than ever how fragile our bodies are, how susceptible to disease they can be, and how important the strength of the spirit is in attaining health.  I am more aware that my family is more important than the next paycheck to pay the bills.  I am more aware that the tight embrace of a new friend can lift an enormous weight of anxiety off the shoulders.  I am aware, through continuous reminders, that God is good, that he is all around us and that something will be learned of new challenges to the body.  Another new awareness to come…to make us stronger and able to lift up others not yet diagnosed..or even aware.

The Formal One

“Grow old with me! The best is yet to be.”
– Robert Browning

I walked in and there were rose petals everywhere, pictures of our six years together laid out all over the room,  cards, notes, and even Post-It notes I had written to him from the beginning until recently.

According to Mom, her proposal was something along the lines of, “Are we getting married, or what?”

I thought this proposal would repeat itself in the next generation, as Fiance and I had been together for a long time.  He had brought up marriage many times over, but usually between commercial breaks.  My feet-dragging was enabled by and blamed on the lack of a decent proposal.

Fiance and I believed after our first date that there wouldn’t be a second one.  We found each other pretty unimpressive, I suppose.  Neither of us remember how we agreed on a second date.  Two months later I got my first kiss.  Let’s just say, that in the beginning we were both slow to commit, and then for a few years it was just me.

The morning of the proposal he picked me up from the airport to take me home.  It was an early flight.  I was tired and hungry, so I asked we stop by Sprouts.  He hadn’t eaten and bought toaster pastries.  He couldn’t eat them which I found odd because he was starving.  But I was too hungry to really make anything of it.

When we got home, he told me to go to the bedroom, and he looked very anxious.  Then I knew.  After my eyes had scanned the keepsakes of all of our good times, painful times, and unremarkable normalcy (I think there were notes asking him to do dishes and the like), my heart was going to burst out of my chest as I turned around.  Nothing.  He was gone.

I looked down and he was on one knee.

I don’t remember anything after that.  I must have said yes, because he hugged me and was smiling.  After all that time together, who knew I could be surprised?

A year later, it has completely sunken in.  He was the one all along.  Through all my doubts and questions, I prayed, and my prayer for guidance had been answered, it just took a long time for me to see it.  Looking back, I not only see notes and pictures, I see that God had moved everyone else out of my path, had made everything necessary for us to be together fall into place.  He also softened my heart to the idea that I could need someone so much.  Fiance is more me than I am at times, and we are inseperable.  And this is okay, this is good.

I had many proposals, but Fiance listened and took away my excuses.  What made me say yes?  It was the formal one.

Holding My Hand

God lends us a little of His reasoning powers and that is how we think: He puts a little of His love into us and that is how we love one another. When you teach a child writing, you hold its hand while it forms the letters: that is, it forms the letters because you are forming them. We love and reason because God loves and reasons and holds our hand while we do it.
C.S. Lewis from Mere Christianity

I was raised a Christian, and in describing myself, I think first and foremost to be a child of God.  It is who I am, the essence of my very being.  Any blog posts on my faith are not meant to offend or exclude anyone.  Like all my posts, they are a reflection of me, and this is who I am.  I am not ashamed to call myself Christian, because although some who call themselves Christian give us a bad rep, and some set incredibly high expectations, I am not sheepish in writing that I am a constant work in process.  I fall from grace (many times a day) make mistakes both small and large, and because I do all these things I am not a hypocrite for calling myself Christian, I am human.

I never asked, “Is there a God?”  as a child because I was told early on.  I attended a Christian kindergarten, elementary school, middle school and high school.  Same school.  Bible was a subject just like history or math, and we had chapel every Wednesday.  I was eight years old when I gave my life to Christ.  Before then, I was worried I didn’t do it right.  “Give my heart to Jesus” as my teachers would say.  So before an outstanding performance of Shadrach, Meschach and Abednego (rave reviews poured from Mom and Dad), I sat in the car in full costume, looked to the sky and prayed.  This is it God, I give you my heart.  I opened up my hands to receive salvation.  Little did I know that yes, salvation was mine, but giving my heart to God needs to be repeated as necessary.  Little did I know period, I was eight years old.  At nine, I met with my pastor to be interviewed.  He wanted to make sure I understood the significance of my next step.  That year I was baptized on the same day as my dad. 

Since then, I have not followed the routine sometimes associated with being a Christian.  Going to church at least once a week, praying every day, committing time to devotional study, etc.  Also my mind is not always focused on how to better serve God, but how to get pretty things, where I want to go, romance and falling in love and food.  If I get truly brave, I might write a blog on food later.  I praise God and pray for forgiveness, yes, but the major theme of my prayers has been a request for guidance.  I pray His will be done, that it is made clear to me.  But, He knows that deep in my heart, I really do like my own ideas.  I know my dreams are influenced greatly by the world, and well, might not pan out in joy and success for me anyway, but it’s difficult letting them go.  Giving my heart back.

When I feel close to God through prayer and learning I feel like myself.  The Holy Spirit gives me…me.  Lately, I feel lost.  I’ve lost myself in my job and my professional and social goals.  I also haven’t been to church on a regular basis in three years.  How can someone have a close relationship with someone they stop learning about? 

Three years ago, I did have a church family.  It was the church I knew growing up, but my family and I didn’t attend regularly until I started singing in college.  I was that girl.  Special music girl who attended early Bible study and sang gospel.  It was a small church. 

After my move, I knew I needed to find a church.  Coming from my teeny country church to attending large churches, I had a bit of a culture shock.  Really nothing against the really large churches, because they reach many in many ways, but I could not find fellowship.  One youth Bible study group never asked me my name.  I couldn’t find a smaller group in another church because I got lost on “campus.”  When my grandmother died last year, I held it together pretty well until we were at the actual cemetery.  It hit me that I was putting her body to rest in my past.  So I not only cried, I wept.  I turned around and there was my pastor and his wife.  I fell into his arms and sobbed, and he held me tight.  He stayed with my family during the afternoon and uplifted our spirits, and we laughed together.  He was the one who gave my father a Bible, who baptized us, who helped me remember that my ministry was in my music.  He says to not call him “Reverend.”  We preface his name with “Brother.”  At the churches I visited after my move, I even had a hard time tithing.  Usually the hard time for me would not be having cash on me, and then feeling guilty, hoping nobody was staring at me.  During the recent visits,  feeling that I had not given back to the church withered as I passed a Starbucks on my way in and a gift shop on my way out.  We cheered when my pastor was able to lease a new used car, so he could return to making home visits.  And that comparison stuck in my mind.

I do like the idea of a larger church, because I’ll be more likely to find fellowship with those my own age, the music tends to be better during the service which inspires and uplifts me, and there are more ways to find lessons you need and some you didn’t know you needed.  I’m just lost.  Figuratively and literally.  I had a hard time parking, finding where the services were taking place, and even finding my way out again. 

So instead of praying for guidance in my career, in my finances, in my love life, in my travels, in my community service, I must pray for guidance back to Him.  Therein lies fulfillment and direction.  I will find a church, I will find the time, but He needs to hold my hand.  And I need to let Him take it.

A special thanks to my mother who always reminds me where to turn.

Here and Now

Sometimes life brings you to your knees.  Then it stabs you through the heart, kicks you in the stomach and then, as you fall in agony, life hits you over the head with a bat.   At least this is what it feels like physically afterward.  

Letting go is difficult.  Of  a person, a thought, a dream.  An idea of happiness.  The absence of that idea can be quite crushing, and letting it go can be heartbreak, pure and simple.  There is more to life than what is not in it.  That realization is key.

After my beating (they happen to everyone), I knew immediately that I must take stock of what is here, in my grasp.  I have a man who loves me deeply, a family that has invested so much in me, and friends who care whether or not
I get beaten or not. 

I can’t have the life as I dream it, at least not in all aspects.  I am only human, and don’t know what’s best for me.  Actually putting this realization into action is very difficult (see multiple posts on the subject).  My friends are wonderful, but can’t give me the right answer.  Only by letting go, and giving myself to God’s will, will I find what is best for me.  Today I prayed fervently for guidance.  Moments later, a small bird landed at my feet as I sat at my gate in the airport.  Always comparing myself to a sparrow, this was a gentle reminder that I am being looked out for.  I’m sore now, but I am going to be fine.

I have been scared before, burnt before, and I have scars to prove it.  But one thing I forget when the stab hits the first time, is that I am tough.  I come from a family of tough women who gave me life examples, and just when I thought I couldn’t hold in the tears of fear, anxiety and loss, I smiled.  And I laughed.  I was aided by what is here and now – Mom, Friends, Boyfriend, a dog and a little bird.

Little Reminders

Boyfriend has a good heart, loves cats, walks through the mall behind me, and indulges my cravings for outings of froyo and coffee. Sometimes, as my acting best friend, it’s easy to forget that underneath all the acts and love of strawberry scented candles, he is a dude. So, I need little reminders.

When people ask what I love most about Boyfriend, his best quality, what makes me not want to run over him with a car, but rather put gas in his, I always reply it is his faithfulness to me. We have been on and off for over 5 years. Even during the off, if I didn’t call him to check up, he would call me. Now, he tells me how beautiful I am every day. He has informally asked me to marry him many times, and although I have not replied in the affirmative, he is still here. Still asking.

Seems like the perfect guy, right? He doesn’t even check out other girls when I am around. If an attractive woman is around, I point her out to him. And yes, I am that cool.

So, Boyfriend caved and watched a chick flick with me. Even though there was plenty of nudity, Love and Other Drugs still fits squarely in the chick flick category. At the end, when all the sleaze is worn away and the movie gets really emotional, Jake Gyllenhaal pledges his loyalty in the face of lifelong degenerative disease, I thought, “Wow, I really feel that Boyfriend would say these exact words to me, if my disease took all of this devotion.” Before I can even turn to look at him, I hear him take a breath to say,

“What a homo.”

The 26th Year

So far, my twenties can be summed in three little words, “I don’t know.”

For all the close friends out there that know me well can attest that  “I don’t know” comes out of my mouth quite often, and is usually followed with the reply, “Well, I don’t know what to tell you.”

I’m summing up over six years here, so that ranges from career, school, love life and investments to whether or not sugar-free jelly beans are a good dinner idea.  Never EVER a good idea, by the way.  What I’ve learned from jelly beans (again), I have not learned from other experiences (I’m going to go with sugar-free citrus slice gummies next time).  Or maybe I have.  I don’t know.

But that all changes…in my 26th  year.  Have I said that to myself every year since I developed the mental capactiy to retain memory?  Maybe.  Does it matter?  No!  Because THIS time, I don’t expect to have it all figured out. 

The 20s are dedicated to the question, “What next?”  Why linger on it?  I’ll get older soon enough, so I’m going to follow Dad’s advice and think of the positive and take it one day at a time.  Live on the days that God gives me.  Not dwell on tomorrow and the question.  Tomorrow will come, whether I fret about it or not.  I’m just going to be happy, and chase all my cares away.  (I loosely quoted a person, a book and a song right there.)

Nobody  has it figured out.  I would like to get to that point where I look around and think, “Aaahhh, cozy.”  Until then, I will relish my infatuation with possibility afforded to me in my 20s.   Snow White had a husband, castle, loyal group of friends that made her feel tall and animals that cleaned things…all by the time she was 14.  But she is not real.  I’m a real person who doesn’t appreciate pet fur on my washed dishes and doesn’t condone breaking into homes.  So, of course I don’t expect to have her life!  I do, however, would like to have a pet bunny one of these days. 

I write this blog for me, but also for all the other girls past 25 freaked out because they don’t have it “all.”  We do!  Come on, we’re in our 20s!  We have youth and opportunity!  What’s better?