Monday, August 18, 2014

30/30 Bucket List: Go to Europe



We are ready to go.

-Viktor and Kristen Rozsa


The night I met Kristen she was wearing a strange hat.  She was trying to be a toadstool.  Her daughter, Emily, was dressed as a garden gnome.  It was a costume party at a mutual friend's home.

The next time I saw her she was wearing another strange hat.  She was trying to be a salt shaker.  This time Emily was a princess and new little baby Gabi was a pink fuzzy bug.  That was also the night I met her husband, Viktor, who was posing as a pepper shaker.  It was a year later at a costume party at a mutual friend's home.

By the time we would arrive at the annual Halloween party the following year, she and Viktor dressed as baristas with three (add newborn Lillian) of the cutest little frappuccinos ever, we would greet one another with warm hugs. As friends. And I would have seen her throughout the year -- dressed in normal clothing -- more times than we had kept track of.

It was a few months after that second party, after we had attended a dance recital for our friends' daughter with the Rozsa's and helped our friends move with the Rozsa's and celebrated a new page -- a new building -- for our church family with the Rozsa's, that Johnie and I sat on our couch to discuss what we felt like God was leading us to do in the upcoming year.

We do this every so often and it isn't unusual for us to have different goals and visions and dreams.  When we agreed in unison, even in the details, that we both were compelled to "support Viktor and Kristen" we knew that was one thing we would do right away.

Viktor and Kristen were (and are) preparing to become long-term missionaries in Hungary with One Mission Society.  Viktor grew up in Hungary and it was at an OMS English Camp there when he came to know Christ.  A few years later, he would travel to the U.S. to complete a theological education in hopes of returning back to Hungary with OMS to reach youth for Christ in the same way he had been saved.

It was in the U.S. that he would meet and marry Kristen, an Indiana girl with a heart for missions.  And together they decided to devote this season of their life to reaching Hungary for Christ.

I could write a whole series of blog posts on the work they have done and the sacrifices they have made in their efforts to get to Hungary.  And I'm sure I don't know close to all of it.  (But they would be embarrassed, and possibly even upset with me, and that would take a long time to write anyway.)

I will say: Their passion, their willingness to serve and their unique experiences and gifts make them stand out in a spectacular way.  Very, very rarely do we meet missionaries with the education, the fire and the deep-rooted knowledge of the culture to send to foreign fields.  That was obvious to us right away and is obvious to anyone who spends time with them.

But we have been blessed to get to know the Rozsas not just as missionaries, but as people.  As friends.  In the last year and a half, they have celebrated with us and mourned with us and stood beside us in the nitty gritty of everyday life.

And so when I pulled out the slip of paper from the bucket filled up at my party that said "go to Europe" everyone thought they knew the culprit: The Rozsas. 

They had already invited us to visit them in Hungary.  More than once.  And Johnie and I have always been open and eager for that possibility.  In fact, Viktor and Kristen hope to make it to Hungary before my next birthday and it isn't out of the realm of possibility that Johnie and I might visit them there.  In the next twelve months.

But they weren't responsible for this particular challenge.  Another party guest, who wasn't very familiar with the Rozsa's mission dreams, wrote that one down.  And he even apologized later when he realized I only had a year to complete such an expensive challenge.  He thought it was a true "before you die" bucket list.

Holding that slip of paper, I felt a twinge of resignation that I wouldn't be able to complete my bucket list this year. But I also had a bit, a tiny glimmer, of hope.  Hope that God would actually pull something off so grand as to send my friends to Hungary as missionaries and allow me to visit them there all in just a year's time. (Though Viktor and Kristen have been working toward this goal for several years.)

Because here's the deal: I've already decided that if I go to Europe in my thirtieth year it will be to visit the Rozsas.  But here's the even bigger deal: Whether or not I go to Europe ever doesn't really matter.  What really matters is getting people like Viktor and Kristen, full of heart and talent, there as quick as we can.  So they can join the exciting kingdom work already happening.

And as sad as it makes me to think of this family I have grown to love and depend on moving so far away for several years, it makes me even sadder to think of them not getting to live out this dream -- this calling -- they have given everything for.  It makes me even sadder to think of never knowing what positive difference they could make in Hungary.

Reading "go to Europe" instantly had an automatic, silent, "to visit Viktor and Kristen" attached to it for me.  And in the days following it was like "help send Viktor and Kristen" was added to my list as an extra challenge.  And so that is why this is the first challenge I am tackling. 

Not many people read this blog, but if each of you took the time to help with this goal it could make a huge difference.  And that is what I am asking of you.  Do what you can:
  • Pray. This isn't the cop-out option.  It's the most important.  Pledge to pray for Viktor and Kristen, and Emily and Gabi and Lillian.  That they will remain strong and courageous.  That they will share the good news boldly when they get to Hungary.  That they will be given the resources they need to get to Hungary.  Pray for them daily.  Pray for their peace in uncertain times.  Pray for the hundreds and thousands of miles they travel each month to be safe and fruitful and as enjoyable as traveling from home to home and church to church with three little ones can be.  And pray for their encouragement and steadfastness and clarity to do what God has called them to.  Because as every missionary (and every human) would tell you, it doesn't always go like you thought it would.  Viktor and Kristen thought they would already be in Hungary.  And they still aren't sure they will get there as quickly as their revised plan would take them, an uncertainty that makes coordinating a move around the world even more difficult.
  • Get to know them. Visit their blog, their missions page, their facebook page.  Follow them on twitter.  Call them or email them.  Invite them to your home or to your church to share their story.  You'll understand what I've said about them if you do.  And -- bonus -- if you live close enough and play your cards right, you might even get some of the best homemade pizza you've ever put in your mouth. Or Hungarian goulash. Or chocolate eclair. Or... I digress.
  • Connect and share.  Tell others about Viktor and Kristen.  Your church family, your friends, your relatives, your co-workers and classmates.  They may be able to help or they may know someone who can.  
  • Donate. If you are able, please consider donating to their mission (click here).  It takes money to get to Hungary and live there. This is impossible to accomplish without the funds necessary.  Every "little bit" is actually quite significant in helping them reach their goal. You can make a one-time donation, or a monthly pledge.  And your pledge can start now, or you can pledge to begin your support once they arrive in Hungary for their term. Small monthly pledges add up.  
On their blog, Viktor and Kristen said simply, "We are ready to go." And their life speaks those words louder than they could even shout.  They just need the resources.  Will you help?

Wednesday, August 13, 2014

30/30 Bucket List

Challenge accepted.
-Barney Stinson

You know that awkward feeling when you're at your birthday party and you see people huddled over some note cards in a corner? Some are giggling. You try not to look directly at them, but you have a sinking suspicion something is up?

Me too.

As I would learn later that evening -- after I worked up the courage to peek in the corner -- my family and friends were creating a bucket list for me. Thirty challenges to complete (and photograph) in my thirtieth year.

I am not sure they realize just how seriously I take these kinds of things. (As evidenced by one card which said simply, "spacewalk." And I do plan to do that, by the way.  This year.) Basically, I had been handed what would become thirty dares to complete over the course of a year.  And the thing about a dare is you have to do it. It's a dare. So you have to. No matter what.

It was with a nervous stomach that I reached my hand in the bucket to pull out the first card. "Dangle your toes in the ocean." Forget dare... excuse to go to the beach!  Because now I have to. This year.

And I have to say my friends were mostly very nice (digging 1,000 pounds of sweet potatoes aside). I got a lot of vacation, evenings out and expensive gift challenges. In retrospect, they were almost too nice. I felt like if I completed every challenge they issued, I'd arrive at 31 a lazy, sunburned glutton.

But still, it is a challenge. A dare. It cannot be ignored. So if I must go on multiple vacations, I will. (I hope.)

And even though spacewalk wasn't the only one that seemed impossible to tackle in 365 days, I have decided to go for it. And for humanity's sake, to fill in the blank spaces remaining in the bucket list with things that might be a bit more impactful than spending thousands of dollars on treats for myself.

Honestly, I don't know if I'll be able to complete the bucket list. But I do hope I have fun (which accomplishes one challenge all by itself!) and make some kind of positive difference trying.

Stay tuned!

Friday, June 6, 2014

Dreams of Writing

Being who you already are no matter the circumstances of your life is what it means to release the art you were made to live.

-Emily Freeman

The writer's group I'm blessed to be a part of asked us to write this week on our secret dreams as writers and what is holding us back from them.  Initially, I wanted to say I quit my job and am seeking out the most meaningful (read: unpaid) writing work I can find.  I've made the leap -- I just don't have any assignments.  I just can't find an audience.  

I wanted to say I'm going for the dream, I'm just failing.

But I spent a few quiet moments to ponder what my dreams truly are.  When I am honest with myself it was never my dream to write for state lawmakers (though that felt like a dream job).  And it isn't my dream now to secure great writing gigs.  It's deeper than that.

The dream is to move people with words.  To inspire them to make their world better.  To reach them down wherever they are and let them know they can go up as high as they would like.  To tell those girls and boys who don't know it yet they are good enough.  They are capable.  To encourage kindness and diligence and dedication to more than just what we see in front of us today.

The moments when that has been possible have been the moments when life felt right.

And here I am with two and a half hours until midnight with the worldwide platform on my computer screen and a group of wonderful women cheering me on and I am running over the reasons in my head why I should sit this one out.

I'm tired.

I don't have enough time to get it right.

I don't want to be late again.

No one will read it anyway.

If they do, they'll think I'm stupid.

I need to get some other things done.

This isn't mandatory.

And the pile of excuses is always there for me.  I can offer them up.  Hide behind them.  Spend my time ticking them off, one by one.  But that is what is actually holding me back, isn't it?  Excuses.

Okay, it is A LOT more than that.  But excuses is a big one.  I'd be further ahead if I didn't cling to them.

The cursor flashes as I decide whether or not to elaborate.

But I'm tired and it's late and I need to get some other things done and this isn't mandatory.

We'll see what tomorrow holds.

Saturday, May 31, 2014

Having lupus, Part 10: My relationship with God

Oh love that will not let me go I rest my weary soul in thee.
I give thee back the life I owe that in thine ocean depths its flow 
May richer, fuller be.

Oh light that follows all my way I yield my flickering torch to thee.
My heart restores its borrowed ray that in the sunshine's blaze its day
May brighter, fairer be.

Oh joy that seeks me through the pain I cannot close my heart to thee.
I trace the rainbow through the rain and feel the promise is not in vain
That morn shall tearless be.
-Oh love that will not let me go, George Matheson, written June 6, 1882


I am no expert.  Far from it.  I may not even be right.  But as I began to put my thoughts and feelings into words, I realized that to provide an honest look into my journey with lupus I would have to talk about God.

I feel like my spiritual life has been so deeply impacted by my health.  While words seem inadequate to explain this, I will offer an attempt to share this profound part of my spiritual journey.

Before my diagnosis, I trusted God.  I even relied on Him daily for many things.  I prayed over my writing and I prayed over my cooking and if something turned out well I knew it was because it had been blessed by Him.

Sometimes I offered thanks for my health, but I never really asked God or credited Him for my strength to get out of bed in the morning.  Thousands of mornings I woke up and rolled out and lived my day thinking that my strength came from the rest I received or the food I ate.  If I even thought about it at all.

Lupus showed me very clearly I actually have no control over anything.  If I am to get out of bed, it is God who will provide that strength.  If I am to have energy, it will come from Him.  (And that isn't just me -- it's the same for all of us.  I just never realized how true that is until now.)

He will be responsible for my healing, too.  Not in a refuse-all-types-of-medical-intervention kind of way.  But the success I have found with my herbalist is only because God led me to him and He blesses that treatment.  And my future good days are gifts from Him.  However it is that I am finally cured of this, it will be all to His credit.

Which begs the question: Why doesn't He just heal me now?  Why didn't He just protect me from lupus to begin with?

My answer is I don't know.  (I also don't know why He chose to deliver me from poverty and from abuse and from a great number of other things.  And I don't know why He has protected me from accidents and cancer and pain of all kinds.)

But while I have lupus, He is working things out for good.  I hope that is as obvious to everyone around me as it has been to me.  That is not a blase, glossed-over answer.  I can say that God is good ALL the time with confidence.  Mine is not a weak or a blind faith.  It has been tested and tried.  I have wrestled with God.  I have tried other ways.  I do not always know and I do not always understand, but I can see clearly that His ways truly are higher.  And He is loving beyond words.  He is true perfection.  And if He cannot be trusted then trust cannot even exist.

I am still learning the depths of those heavy truths.  His patience is immeasurable.  (For you, too.)

I was not (and am not) happy to be sick.  Lupus would have been one of the very last diagnoses I would have picked for myself.  God has heard a lot about this from me.  But I have come to realize that we all have burdens and struggles in this life.  The label for one of mine is lupus.  That doesn't make life any harder or any easier for me than for anyone else with their own burdens and struggles.

Though I may feel like one at times, I am not a victim.  I am not undeserving of lupus.  By that I mean I am not some extra special person exempt from any of the hard times faced by all humans in this fallen world.  If anyone should have been exempt it was Jesus.  And He bore it all.  So I am just like all the other people.  Waiting for the Lord to fully redeem us.  (He is and He will.)

And I have felt the Lord walk closely -- hold tightly -- to me every single inch of this journey.  He has given me strength I could never have imagined.  And He has sent me so many sweet blessings along the way.  Poignant gifts to remind me of His steadfast love.

I am not thankful for lupus, but I am thankful that God used it as a tool to draw me closer to Him, closer to my husband, closer to many people in my life.  I am thankful to have been given this new perspective on living.  I imagine I would have continued to waste years of my life if I didn't come to realize how precious time is.

Like the rest of the world, I am a work in progress.  And I am so thankful to serve a Savior who loves me so dearly, who will not let me go.  Who is making me whole in every way and carrying me tenderly through until I am (and He is) finally complete.

Blessed be the Lord who would not give [me] up.
Blessed be the Lord for His unfailing love.
The snare is broken and [I] have escaped.
[My] help is the name of the Lord.
Blessed be the Lord!
-Had it not been the Lord, Leonard Smith, Jr.

---


This post is the final in a series on how lupus has affected me.



Click on the links below to read more:



Part 1: Introduction, The horrific mystery disease



Part 2: The bad times



Part 3: How lupus made me a better wife



Part 4: A practice of patience



Part 5: More on the pit



Part 6: Exhaustion



Part 7: Saying no



Part 8: Taming fear and anxiety

Part 9: The scapegoat


My diagnosis



My herbalist and the treatment option I am choosing right now



My recent lifestyle changes



To learn more about lupus, you may visit the Lupus Foundation of America.

Tuesday, May 27, 2014

Having lupus, Part 9: The scapegoat

The search for a scapegoat is the easiest of all hunting expeditions.
-Dwight Eisenhower

Born from my splash into alternative medicine shortly before my diagnosis, the rash of remedies suggested to me by well-meaning acquaintances after my diagnosis and -- of course -- my lifelong quest for self gratification, I began looking for benefits to chronic illness quickly after receiving the news.

Maybe since lupus was to blame for a lot of bad stuff in my life I could also use it to my advantage sometimes.  And that was the beginning of my plan.

Already I was swigging a concoction of herbs each morning and had listened to all kinds of unscientifically-proven treatments.  I felt willing to try anything.  So why not try anything?  And see how it would affect the lupus.

Maybe my lupus symptoms would disappear on a beach in Mexico.  Worth a shot.  (Still haven't tried this one, but plan to and also have learned that one must be patient through long trials to reach the full effectiveness of some treatments.)

The stars aligned one week when I ate out several times at some of my all-time favorite restaurants.  I also felt really good that week.  Coincidence?  I prefer to call it restaurant therapy.  And rank it as highly effective.

Might lupus symptoms rise and fall based on potato chip or dark chocolate consumption?  Only one way to find out.  Could Coke alleviate symptoms?  I'm not willing to say no yet.

And then: Might excessive dish washing cause a flare?  Maybe.  I've decided not to risk it.  Or too much house cleaning?  Better safe than sorry, I say.

That time I embarrassed myself.  The lupus was affecting my cognition, my balance, my whatever it was, I'm sure.  Did I just make a mistake?  It wasn't me, it was the lupus. 

Whether it is buying (or eating) something, engaging in or avoiding an activity, or explaining some shortcoming or discrepancy -- my new ace in the hole is simply on account of the lupus.

I played the lupus card to get A LOT of wonderful help moving (though I'm sure our sweet friends would have helped anyway).  Lupus got me out of months of laundry and other chores.  Really, I haven't found the bounds yet for exploiting this disease.

But, I plan to test those limits to their full extent in the months and years ahead.  I always hear people saying to look on the bright side, to take the good with the bad... that's just what I'm doing.  Making lemonade.

---

This post is part of a series on how lupus has affected me.


Click on the links below to read more:


Part 1: Introduction, The horrific mystery disease


Part 2: The bad times


Part 3: How lupus made me a better wife


Part 4: A practice of patience


Part 5: More on the pit


Part 6: Exhaustion


Part 7: Saying no


Part 8: Taming fear and anxiety

My diagnosis


My herbalist and the treatment option I am choosing right now


My recent lifestyle changes


To learn more about lupus, you may visit the Lupus Foundation of America.

Friday, May 23, 2014

Having lupus, Part 8: Taming fear and anxiety

Maybe... to be fearful in this universe is an insult to God.
-Dallas Willard

This is one of the harder things for me to admit.  I have always wanted people to see me as strong, as bold.  But really, I am very timid.  And for years of big talk, I lived my life in fear.

I spent countless hours worrying and fretting.  Those hours are lost now with nothing gained.

Who of you by worrying can add a single hour to your life? (Luke 12:25, NIV)  Not me.  I tried.

I feared failure.  I feared losing blessings in my life.  I feared illness.  I have very poor vision that has continued to slowly deteriorate, and I have spent years gripped by the fear of future blindness.

Some nights I was so consumed with fear and anxiety -- over truly petty things -- I couldn't sleep.  It held me back.  I let it chain me down.  I let it have too much control of my life.

Then I was diagnosed with lupus.  The risk of a lot of things I feared increased.

You would think that my anxiety would go into overdrive.  But it didn't.  I reached a point where there was just too much to worry about.  I literally didn't have time to fret about it all.  And truly, this disease, it seems, has made time so precious to me.

This disease is unpredictable.  I don't know when I'll have a good day or a bad one.  I sure don't want to waste good days in fear.  And to take the time to worry about everything that could happen to me because of lupus would take all my time.

So, if I hoped to function -- and to live my life as fully as possible -- I had to learn how to overcome my fears.  This is still a work in progress.  This was not a post I had originally planned for Lupus Awareness Month.  I have included it for two reasons: (1) I noticed that fears were rising up in me these last few weeks and I have had to work to manage them.  (2) I see others who are gripped by the same fear and anxiety that used to consume me.  I hope for everyone the freedom I have found.  And if sharing my experience can help, then it is worth it.

I used to think that worrying about something might actually help in some way.  That if I could anticipate the bad things, I would be better prepared for them if they happened.  I had to make it to a place where I saw very clearly that Jesus is right: I do not gain anything -- not one thing -- through worry or fear.

Now, when I feel those old anxieties start to well up inside of me, I take a deep breath and I pray.  I pray often for the Lord to keep me calm and centered in His will and in His presence and His provision for me.  And when fear begins to creep in, I stop and pray specifically for that.  I tell the Lord bluntly what I am worried about, as trivial as it may be, and I ask Him to take care of it for me.

And with the relief of knowing the King of the world is on it, I then talk myself through my worries.  If it is a health concern, I remind myself I am doing everything I can to stay healthy and that I cannot prevent certain things from happening.  I just must wait and if an ailment hits me, then I will deal with it.  In the meantime, I will enjoy the measure of health I have been given.  Sickness, if it comes, doesn't equal failure.  And the Lord will see me through whatever is ahead just as He has seen me through to today.

Sometimes, I worry that I have messed something up in my life.  Maybe Johnie and I are having a disagreement or misunderstanding.  My hours can fill up with worry that I have damaged our relationship or deeply hurt him.  In those instances, I pray that the Lord will work out what I intended to do, not what may have actually happened -- or that He will repair any damage I did.

I also have a file saved on my phone, Encouragement, and I open it up and read over the messages I have written there until I feel calm.  (A few of the messages include: If I messed up, it will be fixed.  If I messed up, it doesn't mean I always will.  If I messed up, it doesn't define me as a person...)

Through prayer and intentional focus on specific truths in my life, I am thankful to live much more calmly and peacefully than I ever have before, even amid some of the most raging storms I have faced.

I understand that fear is a multi-headed beast.  And we all fight our own unique anxieties in our own specific ways.  I don't write this as a twelve-step method to overcoming fear completely.  I haven't even done that myself, and what may work for me may not work for you.

But as someone who lived life gripped by fear, I think I may understand a bit about what it is like to live life anxiously.  It is not the best way.  And whether it is through prayer, meditation on God's truths, or other coping mechanisms, I do believe that Jesus offers this freedom for all of us.  If you haven't yet, my hope is that you find yours soon.

Have I not commanded you?  Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
-Josiah 1:9 (ESV)

---

This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.

Sunday, May 18, 2014

Having lupus, Part 7: Saying no

Haha.  No.
-lupus

All of my life I have had trouble saying no.  Partly because I really enjoy trying new things and can find a crazy adventure in almost anything.  Partly because I don't want to miss one thing.  Partly because I hate hearing no.  And partly because I express love and feel loved by spending time with people. 

Our friends in Kansas called Johnie and me the "yes couple."  (Which I take credit for.  I get the feeling he didn't get out much pre-marriage.)  Watching a movie, hanging out, eating out, camping, boating, community projects... If you asked, we'd be there if we could.

And that's how I've lived my life.  I said "yes" to everyone and everything I could.  It's how I worked full-time and went to school full-time and dated and still hung out with my friends.  Every few months (and almost every spring break, unfortunately), I would crash.  I would go to the doctor and be diagnosed with three or four things, and get shots and pills and have to stay in bed for a week. 

When the antibiotics were finished, I'd hit life full-speed again. 

There were times of transition -- like when I got married and when we moved back to Kentucky -- that I tried to live a more balanced life.  But always, inevitably, I'd keep saying yes and my plate would fill up and spill over.  Pushing myself to (past) the limit and then spending time on the couch recuperating was the rhythm I was used to.

When I started getting sick in 2012, I thought it was part of this cycle.  Except for I didn't really recover.  I just kept getting sicker.  And more frustrated.  I didn't bounce back after a week on the couch, and I wasn't willing to spend longer than that letting life pass me by.  Symptoms kept piling on until the spring of 2013 when I reached a new level of low.

I felt emptier than I have ever felt in my life.  Saying completely spent doesn't seem to convey just how completely spent I felt.  I felt broken, maybe even shattered, and wasn't sure if I'd ever feel unbroken again. 

I had to start saying no on a regular basis during those months because I just couldn't say yes. 

It was several more frustrating months until I received the lupus diagnosis (that I still have trouble accepting).  And while I wasn't ready to receive the lupus label, there was one thing I realized very clearly: Whether we called it lupus or an auto-immune issue, whether it would never get better or go away some day, it was obvious that my body was attacking itself.  And it was obvious that the harder I tried to push my body past its limitations, the more it fought back.

My 81-year-old grandfather had just started kidney dialysis treatments at that time.  They were painful for him, and I witnessed firsthand how artificial kidneys can change a person's life and schedule.  One of the most dangerous forms of lupus attacks the kidneys.  It can damage them irreparably.  It can shut them down.  It can require kidney dialysis or transplant.

It was the thing my rheumatologist -- and shortly thereafter, I, too -- was most concerned about. 

Receiving perfectly in-range kidney function test results was such a relief to me.  But, I reasoned, if I didn't make some changes in my lifestyle, the lupus that kept attacking system after system when I didn't slow down would eventually turn on my kidneys.

Maybe I overreacted or was being too dramatic, but that realization was sobering.  On those days when I was tired, or exhausted, or sick but I still wanted to do this or that thing, I asked myself: Is this worth the risk of kidney failure?  I know that pushing myself for a day or for a week won't cause my kidneys to shut down, but I also think there was a good chance that if I didn't slow down my life in general, I could very well be facing very serious health issues in the years ahead.

Turns out I didn't realize how much I loved my kidneys.  I'd rather spend more years with them than a lot of the things I used to spend my time with.  If I'm just not feeling well, then I (usually) stay home.  This one is hard for me.  Turning down movies, dinners out and event tickets goes against all my natural tendencies.  I usually cry when I'm staying home because I'm sick and missing out on something I really want to do.

I walked away from a job I loved because I didn't feel like I could manage my health and my relationships and still do well at work. 

But, on the positive side, having to say no so often when I'm sick makes it easier to say no when I'm not sick.  And, I'm learning, prioritizing things to say yes to even when I'm healthy helps me stay healthier longer. 

Pre-lupus any movie you asked me to see with you, I'd say yes.  Didn't matter if I knew I'd hate it.  You would like it and you wanted me with you, so I'd go.  Any store, any restaurant you asked me to go to, I'd say yes.  Didn't matter how I felt about them.  Now, if the movie doesn't look interesting, or the store isn't appealing, or the restaurant isn't what I'm craving, I'll just say no.  Especially if I finally got the house clean, still feel good, and am just getting ready to curl up with a book.  It's just not worth wasting my (now precious) energy on something I don't really want to do. 

My friends have been so sweet and supportive through this rough and crazy last year.  I had a friend call a few months ago and ask me to go out.  I was in my pajamas and dinner was already made.  Pre-lupus I would have thrown on jeans and put the food in the fridge.  I actually felt good and wanted to see this friend.  But I was craving what I had cooked, not what she was suggesting.  And I was looking forward to a quiet evening at home.  And I already had a busy day planned the next day.  So I said no.

I've said no to her before, and she knows a little pushing is all it takes for me to cave.  This time, I still said no.  And expected her to push a little more.  "Are you not feeling well?  Is it the lupus?" she asked.

I guess I could have said yes.  I almost did.  Technically, it was the lupus.  "No," I said.  "I actually feel really good today.  I just don't want to get out and I'm hoping if I don't push it tonight I'll still feel good tomorrow."

With that piece of information, she continued to push guilt-free, and I continued to say no.  I didn't go out that night, and I haven't done a lot of things I otherwise would have.  And while I hate having to say no as much as I do, I love the freedom I've found to say no to good things so I can say yes to even better things.

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This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.