What about the husband?

Goodnight. I love you.
-Johnie

I have always thought Johnie would be a great dad. It is so sweet to see him play with little ones. This was never reason enough for me to actually get pregnant though. Because, you know, I'd have to actually grow a full size baby inside my body, get it out somehow (still haven't figured out how that is supposed to work) and then be his/her mom for the rest of my life. I was content just to watch him with our nieces and nephews.

But if I'm getting this surprise, this is a part I look forward to. Watching Johnie in action.

I just had to laugh the evening I told him our news. I think I could have asked him for anything that night and he would have given it to me happily. No complaints. (That has since died down.) He held my hand as we watched TV that night. He went out to pick our dinner up. And brought home flowers. He volunteered to do several little chores I would normally do.

And if any of you know Johnie and his track record of trying to say sweet things and failing miserably...One night before bed I was telling him how I just couldn't get over how quickly everyone just got excited about this baby and already loved him/her. They already started making plans for the baby.

I just couldn't get there. "I just don't know," I said. "I mean, am I just going to miscarry? Am I even really pregnant? Is the baby going to come early or late? Or be sick or healthy? I just don't know anything about this baby."

"We know this baby has a really great mother," he said.

Did those words just come out of the mouth of the man who said we would never work when he was trying to convince me to date him? Yes, they did. More than one miracle was conspiring around me.

When people asked us how we were feeling I said, "nervous and scared." He said, "more excited than I thought I would be."

I didn't want to bother him with added stress at the beginning of his new job so I recruited my mom to go to my baby appointments with me. Only he already planned to go with me himself. And talked with his boss to work out a schedule that would allow him to work around my appointments.

One night we were running errands and it was a couple hours past dinner and I was very hungry. I decided a chicken breast (two, actually) from Bojangles would do it. But the lady at the drive-thru informed us it would take 12 minutes. I didn't feel like I had 12 minutes, so I made him take me to McDonald's. But the line there was around the building and I wanted chicken anyway. So I screamed. I've never done that before in my life. (I have screamed before... just not over having to wait a few minutes for food.)

He took me back to Bojangles and we waited for the chicken. A couple bites in I felt settled down and embarrassed for acting so horribly. "I'm really sorry," I said. "I don't know what came over me. There's no excuse for that."

"Ummm... you're growing a person. You need to eat. I think it's completely understandable. I can't even imagine how I would act." (At which point I hoped I really was pregnant... Otherwise my behavior would have been even more inexcusable.)

He's given me the "Amy, you're growing a person." pass plenty of times since we learned the news.

There are things he does stress out about. In the first 16 hours after the positive pregnancy test, he wanted to buy all the nursery furniture, pick out a name and make a decision about vaccinations.

Randomly, a couple weeks ago, he felt it imperative to change out several of our door knobs so they would be safer for the baby... when s/he starts walking. I asked if he felt like it was something he needed to do that day. He said yes.

And, little things will pop up every now and then that bring him pause or that put him in a bad mood. But mostly, he's just really sweet.

He began reading to the baby that first night. And each night before we go to sleep he kisses my belly and says, "goodnight, I love you." (He started that on his own.) Now that I think of it, he was the first person to ever tell the baby "I love you." Pretty sweet.

One night I asked him a question I wasn't even sure I wanted to know the answer to: "If you could go back, would you change things?" I had no idea what he would say. And I didn't even know what I wanted to hear. But he gave the most perfect answer I could think of given our surprise with this baby and my deep-seated quality time love language.

"That's a trick question... I really want to have longer with just you, but I already love this baby."

With all I am nervous about with this little one, the father isn't one. (I love you, Johnie! And thanks for being awesome!)

On feeling accepted

So... what was your high school superlative?
-Grad school friend

We were sitting around a table at a restaurant just off campus.  Somehow the conversation turned to high school superlatives.  One friend had been voted Most Likely to Succeed, another Most Popular.  I laughed at jokes and stayed quiet until they asked me and I couldn't think of anything but the truth.  The gig was up.  They would know I'm a loser.


I wasn't voted anything.
Shocked faces.  And one friend said, "Not even class clown?"  I appreciated the sentiment, but no.


I never really had very many friends in school.  I never had to use more than three fingers to count them all, actually.  Everyone else was either mostly indifferent toward me or showed an open disdain.  They made fun of my glasses and made fun of my asthma and made fun of my clothes and made fun of my grades.  To the point that I didn't want to go to school anymore.  To the point that sometimes I didn't even want to live anymore.  To the point that I appreciated the people who just ignored me and I tried to stay ignored by as many people as I could as much as possible.  Things like high school superlatives were just another reminder that I was not in.


I thought the problem was me.  That I was unlikeable.  A loser.  It was a truth I accepted.  Until my sophomore year of college, when I made it to a departmental assembly early, signed in and retreated to a corner.  And a popular and beautiful classmate came over and began chatting.  Genuinely chatting.  My eyes darted around the room and I figured maybe I was better than no one to talk to.  But as the room filled up, and her friends filled out a circle that included me, she -- and the others -- were still acting friendly toward me.  Genuinely engaging me in conversation.  Genuinely including me.  And that was the beginning.  It was in the Department of Communication at Eastern Kentucky University that I felt accepted by my peers for the first time in my life.


I never let them in on the secret that I was an imposter -- that an uncool kid had infiltrated their fraternity and sorority and athletic ranks.


In grad school, I was afraid my loser status would be more obvious.  But for all their smarts, my classmates never picked up on it.  Until that fateful day when I had to confess: My school days had been completely different than theirs.  But they liked me anyway.  It was like a whole new world -- people knowing I'm not cool -- never had been even close -- and being friends with me anyway!


Out of school, I approached each new group of people with that same timidity I had as a child.  Expecting rejection, being surprised by acceptance.  Work friends, church friends.  I even scored an extremely hot husband, against all odds.


I didn't realize until well into my adulthood that I wasn't a loser.  I was just bullied by a few misguided classmates.  The problem wasn't me, it was them.  And while I still carry around some scars from those days, I'm getting more and more comfortable -- less shocked and surprised -- by the blessing of acceptance among friends.


Since moving back to Kentucky God has bonded me with a precious and beautiful group of women who have transcended friendship into sisterhood.  Last summer half of us were pregnant and those without a baby bump got an aunt-to-be shirt as a consolation prize.  Well, everyone but me.  Mine said, "I'm the cool aunt."  And it wasn't even a cruel joke.  If the eight-year-old Amy who sat crying at her birthday party because no one showed up could have only known this would happen.  That she'd have more friends and relationships than she felt like she could maintain.  That those friends would bestow on her such a coveted adjective.  That she really wasn't a loser after all.  I think it would have made those hard years easier.


And so, to all the other girls out there who sit alone and cry alone -- who don't have the right clothes or the right looks or the right social status.  To the girls (and boys) who have been made to believe you are not good enough: I can tell you that they're wrong about you.  You actually are the cool kid yourself.  And someday you'll feel loved and you'll feel accepted and you'll even have the t-shirt to prove it.

Valentine

You'll know what to say.
-Pop


I knew Pop was sick.  When I lived in Kansas I lived in fear of the phone call telling me he didn't wake up that morning.  Pop lived life large, full-speed always.  I always figured one day he'd just stop. 


That's why I was thankful he still hadn't stopped by the time I made it back to Kentucky.  And that's why once I got back home I soaked up time with him. 


I could see him getting worse during his last year.  His bad days were outnumbering his good ones.  His abilities, while still impressive, were subtly shrinking.  The first time I saw him walk with a limp I went home and cried.  My big strong Pop was breaking.


My heart knew our time couldn't be too long and I wanted to write words to honor him.  I wrestled with many that were never quite right.  I paid silent tribute to him when I quoted him in columns and speeches.  The audience and the speaker would never know from where those words came.  But I knew and I made sure Pop knew.  It was my way of spreading him out and sharing him with my world.


I kept wanting to write about Pop and how much he meant to me, but I'd give up in frustration each time I tried.  In the hospital his last month, after one of the sweetest (classic Pop) jokes I've ever heard, he asked me to write something to be read at his funeral.  We all knew it wouldn't be long.


And with that simple request I felt like I had been given a privilege I was all too unworthy of.  Me? Are you sure? And he nodded.  It would be an honor.  What do you want me to say?

"You'll know what to say," he said.

Our last Valentine's Day together for awhile.

I share with you today what I wrote back then as a tribute to my life-long Valentine, my Pop.  For me, I never really understood the romance wrapped up in today.  For me, this holiday always celebrated a different kind of love.  Pop showered me with love every day, but Valentine's Day was always special for us.  No matter where I was or where he was, he made sure I got my valentine.


Last year I didn't know it would be our last one together.  He was sick and I was swamped at work.  I didn't have time to drive up on Valentine's day, and I wasn't even sure he felt much like celebrating anyway.  I so wanted another holiday like the ones I remembered as a child.  But I told myself that love isn't expressed through chocolate on February 14th, and knew that I could go visit him later in the month for a make-shift celebration.  He didn't bring Valentine's Day up last year, and I tried not to make a big deal out of it.  Myself, I chose silence over the possibility of a vocal let down: "Not this year."


But off work that night, I turned left on my street and saw his red Impala.  And the tears just flowed.  Such a beautiful gift.  I opened my door and we hugged and we cried.  What are you doing here?

"I had to bring my baby her valentine," he said.  What a beautiful last Valentine's Day we had together.


And to honor him again now, I share this excerpt from his eulogy:


When I was twelve years old, Poppaw baptized me.  It was significant as all baptisms are, but especially that he was the one to do it.  Several years earlier I had made the decision that when that day came for me I wanted to be baptized by Jesus.


When it was explained that someone else would have to fill in for Jesus, I picked Poppaw.  It wasn't the first time he did the work of Jesus in my life and it wouldn't be the last.


I didn't always understand Poppaw -- and maybe in some ways I still don't.


I used to think he was a spoil-sport.  He'd cut trips short just to get back home.  Too many people stressed him out, even if they were people he loved.  And he wasn't ever very eager to spend his money on fun things.  He wasn't really very eager to spend his money on anything, actually.  Except maybe a car.


And then only if he could get a bargain.  Poppaw could wheel and deal like no one else I know.  He was still making trades from his hospital bed in his final weeks.


He'd walk around the house turning off lights and picking up pop cans, shaking them to see how much was left.  He'd find their owners and remind them to finish their first drink before opening another.


But I've come to realize -- and appreciate -- his strength and resilience.  I've even come to love his quirks, born from a hard life of making do and getting by -- beautifully and gracefully -- with barely enough.


He parented children in his home for six consecutive decades.  As an adult, I've wondered where he learned to be a father.  His own dad died when he was nine and he spent much of his childhood being an adult.


The ones who came those first few decades would probably say he learned through trial and error.  From the stories I hear I wouldn't argue.  He wasn't perfect, but he did the best he could.  The best he knew how.  And all of us who came from him and granny -- children, grandchildren, great grandchildren and now the great-great grandchildren -- can be sure of one thing above all else: He loved us.  He loved his family.


Even more than he loved to fish.


Pop was stubborn.  Actually, stubborn isn't a strong enough word to describe it.  If something didn't work, he made it work however he could.


And you can't talk about Pop without talking about how hard he worked.


If he could get out of bed and wasn't at the river, you could guarantee he was doing one of three things: Working -- full throttle, sweat-dripping work.  Talking on the phone.  Or worrying.  Sometimes he managed to do all three at once.


But when I think about Pop, the thing uppermost in my mind -- other than the love and devotion and service to the Lord that colored the last half of his life -- is the way he loved people.  The way he helped and served.


Poppaw means different things to all of us.  But if there was one thing we could all come together on, it's this: If you needed him, he was there.  If you called him, he would come.  If you asked for help, he would give it.  Each one of us here could think of a time when he made things better for us.  It might have been a mess of green beans, a ride, a home repair, new shoes, or maybe a hug, a prayer, a good word.


And I think that's the legacy he leaves behind.


We learned from him -- and from granny -- how to love the Lord and do what we know to be right.


And I think Pop will live on in our hearts and in our actions, too.  When we stop on the side of the road to help a stranger.  When we plant a garden and share our harvest.  When we admire the mountains and the trees and the flowers and show care to animals.  When we cast our poles in the water.  When we make a good trade.  Or a quick fix with duct tape.  When we put in a hard day's work.  We saw him do those things so many times...


Happy Valentine's Day, Pop!

Thankfulness Project: Wrap Up

Can you see the holiness in those things you take for granted -- a paved road or a washing machine?  If you concentrate on finding what is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.
-Rabbi Harold Kushner


In the last ten days, as I've wondered what I would write about being thankful for if I could get any kind of internet connection or signal from my phone, or as I've taken care of my mom as she was sick, or as I've laid in bed sick myself, my mind has been flooded with possibilities. 

I am not trying to sugar coat things or put on a brave face.  I'm being honest.  There was only one day when being thankful didn't come natural or easy.  I don't remember which day that was.  But as I lay in bed exhausted I thought, "I don't even know what I would write about.  I don't even feel thankful."  I had to think for several minutes to come up with something.  That day feeling thankful was a chore.  And what I came up with was those things we are always thankful for. Platitudes.  Like God and His promises.  That was about all the thankfulness I could muster that day.

I said before that I wouldn't have taken this project on if I would have known everything that would happen this month.  Not because it was hard to feel thankful, but because it was hard to find the time and clear-headedness to write about it in the midst of it all.

But in these final ten days of November, I've felt especially thankful and at peace that my grandparents are back together again. 

You should know my grandparents raised me.  My grandmother cared for me straight from the hospital where I was born until I was 16 and she went into the hospital herself unable to care for me or others any longer.  She taught me and raised me up.  She gave me advice that I follow still today.  She believed in me and pushed me and guided me and corrected me and loved me like no one else.

Losing her is still the hardest thing I have ever been through.

And since the day she died there has been a void in my life.  She passed away 13 years ago, on November 27th.  I have been able to adjust to minutes and hours and days and weeks and months and years without her.  But never Thanksgiving.  She left and it became a restless holiday for me.

I loved and cherished my grandfather.  I was sad to lose him.  I miss him.  I started missing him before he even actually breathed his last breath.  I started missing him the day he couldn't talk back to me when I called him on the phone.  And I thought that losing him would feel like losing my grandmother all over again.

But it didn't.  It felt like they were finally back together again.  It felt peaceful.  It felt like a wrong in the world had been righted.  And while I couldn't sit at the feet of these precious grandparents I loved, I knew they were together.  As they should be.  I knew that when I would see them again, it would be both of them together.  As it should be.  And more than anything, I was more thankful than I can express for them to finally be with one another again.  The world knocked off kilter by her death was balanced out again.

And for the first time since I've been without granny, Thanksgiving didn't feel horrible.  I imagined their Thanksgiving reunion in paradise and I was thankful to be able to enjoy the day and enjoy the time.  I was thankful to just relax and not feel like everything was all wrong and there was nothing I could do to fix it.

In these last days of November, I've felt thankful for my mom and for my husband.  For my brother.  For family and for friends.  For sweet, sweet memories.  For grace and mercy.  For the Lord's provision.  I've been thankful for rest and relaxation.  For comfortable beds and comfortable chairs and comfortable clothes.  For medicine.  For understanding, sympathetic co-workers.  For food and for medicine.  For Coca-Cola.  For turkey.  For words and books and writing.  For snow and for rain and for sunshine.  For transportation and phones and texts.  For access to technology and no access to technology.  For air to breathe.  For cabins and vacations and seclusion.  For hot tubs.  For prayer.  For a break from responsibility and people who understand that I had to let the ball drop and will come back sometime later to pick it up again.  I'm thankful they're holding it for me until I feel ready.

I feel exposed and vulnerable without my grandfather.  I feel lost without his advice and guidance.  I've never spent more time in my life with anyone than I spent with him.  I could write a whole post about everything that frustrated me about him, but I could write even more about how smart and resourceful he was.  How he worked for my 29 years fixing all the broken things in my life.  I'm thankful for him and all that he was in my life.  And I'm thankful to know that he is finally getting to rest now. 

I'm thankful for his influence, and my granny's.  I'm thankful they gave me the strength to live life without them.  And I'm thankful for all the blessings from them and from the Lord.  I am thankful.  More thankful than words or blogs or actions. 

My mom said we should thank the Lord 800 million times.  I told her I probably wouldn't be able to do that.  She said I should ask for help then because she wasn't sure even that would be enough.  So as I feel thankful -- as we feel thankful -- I hope you can join us too.  And thanks.

Thankfulness Project: Day 5

...it's lupus...
-Dr. Lewis

There are moments in life that feel surreal. 

I remember the weekend I met Johnie.  When our eyes locked and I felt electricity in my veins and something inside me knew this was something special. That my life could be changing forever.  More than seven years later I still remember that feeling and still wonder if it actually happened or if I dreamed it.  Or at the very least have over-dramatized it.

Unfortunately not all the unbelievable moments in life are that amazing.

It was October 16th.  I think it was raining.  My grandfather -- who raised me (read: like a father) -- was in the hospital and we weren't sure when or if he'd get out alive.  I had already missed too much work and cancelled two doctor's appointments that week.  Physically, I felt okay.  Given the circumstances.  I had felt at least okay for weeks.  And I wanted to cancel the third appointment.

But I had been waiting for months.  I had already paid out my deductible this year on several other doctors and had a doubly-confirmed set of abnormal lab results.  After a year and a half of illness and frustration and confusion over what was going on I wanted this expert's opinion.  And I didn't want to wait any longer.

So I took more time from work and left my family to drive an hour and a half on winding Kentucky highways to the only rheumatologist in the world who came recommended by a friend and nurse.  (For full disclosure, I didn't realize he was that far away when I took the recommendation.  And as I told him, I was hoping my first appointment would also be my last at his office.)

Like a dog on a bone -- unwilling to stop -- I visited doctors and specialists all year who didn't listen or who dismissed what I was saying.  Who refused to do the lab work I asked them all for.  Who gave me treatments that turned out to be ineffective.  Or suggested medicines to mask certain symptoms at the price of exacerbating others.  As time wore on, my conviction only grew. I must have some sort of hormonal imbalance. Some type of thyroid issue at worst.

Finally, 14 months and five doctors in, one finally agreed to do part of the lab work I had been asking for.  He made sure to tell me that he was fairly certain that all my seemingly random health problems stemmed from depression.  And before drawing my blood, he asked me to make a game plan for when the results came back normal.  "Because they will," he said. "You just need to figure out what to do to make yourself happy."

I thought I was happy and would be especially so if I felt better physically, but he was sure it was the other way around.

I got a letter the next week saying my lab work was normal and no further testing would be needed.

Except by now I was so fed up with modern western medicine that I began seeking out alternatives.  When I got that letter I already had an appointment with an internationally-respected herbalist who I hoped would actually listen to my concerns about a potential imbalance and offer me something other than hormonal birth control.

I requested a copy of the results to take to my appointment and noticed there were some things out of range.  My super smart medical scientist friend assured me those out-of-range results were not normal and should be retested.

At my very last visit in the office of the most disrespectful doctor I have ever met, I got an apology about the letter being sent prematurely and more blood drawn.  The second round of lab work confirmed the abnormal results were still abnormal. 

In the arrogance of his premature diagnosis he at least had the forethought to test for something I hadn't requested. An autoimmune disorder I had never heard of, Sjogren's Syndrome.  That test came back fine but was part of a panel of tested antibodies.  Three others were abnormally high.

For all I love about my herbalist, he is reluctant to label diseases.  He is adamant that he treats people and not diseases.  His holistic treatment has made me feel like a normal person again both in and out of his office.  But I still wanted an answer clearer than the one he offered.

I recounted this whole 18-month-long story to Dr. Lewis through tears.  And was comforted by sarcasm, laughs, sympathy, concern and outrage at all the right junctions.

"Your symptoms and your lab work, they all indicate lupus.  I'm sure you were expecting me to say that word," he said.

All of my searching on the internet and in books and conversation linked my lab results with various autoimmune disorders.  The anti double-stranded DNA antibody -- more than ten times higher than normal for me -- was linked almost exclusively with lupus in everything I read and heard.

I knew about lupus.  I have family members with lupus.  I have friends with lupus.  I've advocated for lupus research.  I've written about lupus.  I did not have lupus.

The surest sign of my disbelief found in my now dried up tear ducts.  Fully composed, my voice was steady.

"Yes.  I know that my lab results are typical for someone who has lupus.  And I know that a lot of my symptoms are experienced by people with lupus, but I don't think I have it.  I don't have the pain people with lupus have.  My joints are okay.  I thought you could tell me what is going on."

He gently explained to me "the thing about lupus" and how I still fit the criteria for diagnosis even absent of joint involvement.

"But I was thinking maybe the lab work was just a fluke."

"We've proven it's not a fluke."

I continued to argue.  He continued to persist.  I realized I wasn't going to convince him I definitely did not have lupus and gave up.  I asked questions and he answered them.  Then he ordered more lab work and scheduled my next appointment. 

"I'm sorry, but this won't be your last time, unfortunately.  There's not a one-shot cure for lupus."

"You should really get on that before my next appointment."

Laughter and then seriously, "People are working on it."

With everything finished I walked outside and sat in my car.  I had been in there for a while.  The work day would be nearly over by the time I made it back and I knew I wouldn't get anything done at the office anyway.  I needed to make that call.  What would I say?

Wait a minute.  Did the doctor say I have lupus?  He didn't say he thought I might have it.  Or that I could develop it.  Or that we needed to run more tests to confirm it. 

Suddenly the months of waiting came to a screeching halt.  And it felt like I had been given my answer too soon.

The tests were to measure kidney functions... to see how the lupus might be affecting my kidneys.  The follow-up appointment was to monitor the activity of the lupus.  Were the doctor's exact words 'it's lupus?'

I reached for the door handle.  I needed to go back and make sure.  But I couldn't think of a graceful way to approach the receptionist and say, "Excuse me.  I was just in here ten minutes ago.  I thought the doctor said I had lupus, but that can't be right.  Can you tell me again what he said?"

I stared at my phone, work number dialed in and couldn't hit send.  I didn't know what words would come out of my mouth and I couldn't tell my co-workers this unacceptable diagnosis first.  So I called Johnie.

We chatted.  He gave me an update on my grandfather and his day.  Then, "How was the appointment?"

What should I say?  "It was good.  I really like the doctor."

"That's good."

I should say it.  "He thinks I have lupus."

I heard a word -- or maybe it was just a sound -- catch in his throat.  Then sobs.  And finally, "That's not what I wanted to hear."

I don't think I've ever felt further away from him nor have I ever wanted to close the gap between us faster. 

The drive home was twice as long as I kept trying to figure out how I had dreamed or misheard the news.  As I tried to figure out how to break the news to this person and to that one.  And in the days that followed, the struggle continued.

For all my training and obsession with communication, I felt entirely incompetent this time.  In what order should I tell people?  And in what medium?  And when?  Just the telling felt overwhelming.

I am sure that there are some of you reading this who know me and are dear to me.  There are friends and family who I haven't told yet and you may be one of them.  I'm sorry.  You don't deserve to hear this news in a blog post.  I am blessed to know and be close to such an amazing group of people who cross geographic and ethnic and economic and social and religious borders.  I don't know how I could find the energy to tell them all (you, if you are reading this) individually.

As I come to terms with this diagnosis and what it may mean for me, I just felt like it was time to go ahead and throw it out there so I can begin the process of moving forward.  I hope you understand.

Just as I did in the months before the diagnosis, in the three weeks since I've still been trying to link this or that symptom to this or that cause.  Sans lupus. 

I'm tired because I'm stressed.  It's normal for people to get headaches sometimes.  That dizzy spell was just a fluke.  Some people just have myriad skin problems that don't respond to medicine.  I don't know why I've been nauseous all day.  Or all week.  I just have bad eyes.  This is nothing. That is nothing.  No big deal.  It'll go away.  I just need to get things balanced out.

I'm starting to realize it's all probably the lupus.  Putting the pieces together has been bittersweet.  That random short swatch of hair I've worked to hide every morning these past few months.  Probably lupus.  Being unable to walk three miles one day, but up to a ten-mile jaunt on another.  Probably lupus.  Mouth sores.  Probably lupus.  Absolutely no weight loss despite weeks of dedicated effort and then sudden, unexplained weight loss.  Lupus.  Lupus.  Lupus.  Stupid lupus.

And still -- don't laugh -- I think maybe not.

I got a call on Friday with those latest lab results.  Thank God, my kidney functions were normal.  The lupus has not affected my kidneys.  The nature of the disease requires me to tack on an obligatory "yet" here.  But there's no denying this is wonderful news any way you look at it. 

The nurse added, "The rest of your labs show minimal lupus activity right now.  Unless you have a flare, we'll see you for your follow-up in January."

You mean he thinks I have lupus? 

Obviously I haven't fully come to terms with this myself.  I don't know when or if I'll ever be comfortable claiming I'm having "a flare." 

And I can't help myself.  I just can't help but wonder if some day, sooner or later, I'll have to rescind this post and tell everyone I don't actually have lupus after all, by way of misdiagnosis or misinformation or misunderstanding or miracle.

If after all these words you're still confused about what lupus is, I can tell you that I'm (obviously) confused, too.  The Lupus Foundation of America has the most reliable information if you'd like to learn more.  (I guess, ironically, I plastered their banner ad to this blog there on the right when I had lupus and just didn't know it yet.)

And because lupus is so different for every person and over the course of the disorder, I can only tell you how it has affected me so far.  It is relatively mild for me right now.  My hope is (if I do, in fact, have it, of course) that it will stay that way.  And I should live as long as I would if I didn't have it, especially with no kidney involvement.

I'm trying to build more rest and sleep into my schedule.  And against every natural tendency I possess, I'm trying to actually listen to my body and rest when the most minor of lupus symptoms arise.  Instead of pushing myself until I crash for a week.  Or a month.  Or longer.  Other than that, I'm making no lifestyle changes at the moment. 

My rheumatologist agreed that since I am responding so well to the treatment that my herbalist is providing, I don't even need any other medicine right now.  And bonus: Since beginning the herbal treatment, not only has my health improved but I have stopped all five of the medications I had been prescribed to take on a regular, ongoing basis. 

Which leaves me needing to answer one final question: How in the world is this a post about thankfulness?

The answer: Because I feel thankful. 

This has been a rough year.  A few months and a few problems ago, I felt overwhelmed just juggling a couple things.  But right now, these last few weeks, I've honestly just felt overwhelmingly blessed and thankful.

I am thankful to be as healthy as I am.  I am thankful that even though the Lord -- apparently -- did not spare me from this disease, He has blessed me in so many sweet and profound ways through it.  He has been with me and next to me and I am thankful for that.  And I am thankful that I can trust Him ultimately with my health and my life.  I don't know how to say that without it sounding like a flimsy cliché.  I just can't seem to do Him justice with words.  Or actions.  Or at all.  So I'll leave it at that.

I am also thankful for the days and the times when I feel good.  And I'm thankful that I don't take that for granted.  I am thankful to have found two wonderful doctors who are compassionate and sympathetic.  Who I feel comfortable with helping me make decisions about my health.  And with no political intentions, I am thankful to have financial access to health care and treatments.

And the reason why I have shared all of this today -- now -- is because as I continually reflect each day on what I am thankful for during this month-long project, I could no longer wait to express my deep, deep thankfulness to the family members and friends who have stood with me, in front of me, behind me, beside me, around me as I have gone through these struggles and ultimately received this diagnosis.

I have felt overwhelmed and humbled and undeserving of their love.

It has truly been a blessing and a joy to feel their love in their reaction and response to this news.  We've prayed together and cried together and laughed together and been angry together.  There have been hugs and jokes and concerned questions and reassurances.  Sometimes I think more for their own benefit than for mine, though I have surely benefited. 

And though I am sick -- and may be for the rest of my life here -- I can rest in the sweet love of an amazing group of people who rally and support and have my back no matter what tomorrow holds.  One of the sweetest blessings of God. 

For that, I am so very thankful.

Worth the wait, Part 2

We need to be more intentional.  We need to be more involved in the lives of people.  We need to be more connected.  We need to be more accessible.
-Jessica Harris, Why I'm not a belt-notcher: The importance of intentional community ***





Here's the backstory: 

The idea for the original Worth the Wait post came from my husband.  We were leaving the grocery store where a man with a cart-load of groceries offered to hand an item up to the cashier who was completing our transaction.  We weren't in the middle of checking out.  Johnie had already swiped our card. 

The cashier cancelled the action, added the item, and the man moved his buggy to let me through.  I heaped apologies, but he said they weren't necessary.

I was struck by just how willing -- happy even -- he was to inconvenience himself for us.

"I just love that people are so nice about things like that here," I said.  This wasn't an uncommon occurence.  We have story after story of friendly retail experiences like this one.

"Maybe you should write a blog post about it," Johnie said.

The post began as a way to brag about how nice people are here in Kentucky.  But I'll be honest: Not every one here is that nice.  (Me included.)  And this state has so many problems I just couldn't bring myself to ask everyone else to be more like us. 

So as I continued to write, revise and edit, I began to ponder the true value of people.  How people should be our priority.  And the underlying reasons for our unwillingness to wait -- our drive to have everything we want and to have it now.  I thought about the cost of our demanding, rushed, self-focused, solitary lifestyles.

Obviously this extends well beyond customer service experiences to encompass a complete cultural framework.

I asked myself:

What if we defined progress not in terms of technological advances or scientific discoveries or societal benchmarks?  What if we measured it by relationships built, people encouraged and strengthened, communities brought together and supported?

What if we defined success not as titles or degrees or wealth accumulated but as lives touched, mouths fed, people hugged and loved?

In our world, best equals strongest, fastest, smartest, prettiest, sexiest, funniest, wealthiest.  The superficial list goes on.  Charity. Grace. Compassion. Humility. Deliberate, intentional thoughtfulness. Those are second rate qualities.  How great, we think, if the strongest or the fastest also has compassion or humility, but that doesn't make him the best.  Being strong and fast makes him best. 

Our individualism and this race to see who can reach the highest the fastest has sent us spiraling inward.  Isolated.  Alone.  Afraid to talk about our struggles lest someone use our weaknesses against us.

So we paint a pretty face.  Manipulate our life so that it looks appealing on cameras and computers for everyone to see.  But when the screen goes dark, we ache.  And we soothe those aches that could be healed by love and community with more gadgets, more superficial accolades, more distractions that keep us further and further away from people who could actually help us.

And as things get worse, as we battle depression and anxiety and feelings of self-loathing and self-worthlessness, our remedies become more destructive. 

It reminds me of an analogy by Dallas Willard of cattle raised where the land is mineral-poor.   The cows crave those essential minerals so badly they will eat anything to quench that longing.  Rusted metal, nails, whatever they can find.  And it kills them.  He was comparing this to people's inherent desire for holiness and for Jesus.  So fitting.  But I also think it extends to our innate longing for community.  Our desire to know and be known.  To be loved just for who we are, just exactly as we are.

In my reflection, I posed the question to myself as I was posing it to my readers: How many problems would be solved if every single one of us was valued and embraced and honored with time by the whole community?

My mind immediately whispered a response: Like abortion.

This was never meant as an attempt to couch a political statement.  The answer came as a shock, and I initially dismissed it.

My original intent with the creation of this blog in the first place was to (among other things) talk about hot-button issues like abortion.  The loudest voices I hear on this issue (and others) don't resonate for me.  I don't really feel comfortable in either of the two major camps and wanted to offer another option, another outlet, for those who may feel like I do.

But as the weeks wore on I kept chickening out. 

I decided a few weeks ago to try to be more vulnerable in this space.  So after my mind whispered abortion this time I eventually decided to go for it.  And spent the time since then working up the courage to click "Publish" on this post.

I feel passionately about babies and about women. It only stands to reason that I also feel passionately about abortion issues.  But that doesn't always translate into clear-cut, predictable thoughts or actions.

When I read this account of a friend walking into a clinic that offers elective abortion procedures, I was at first compelled to put on one of those orange volunteer vests myself and help escort women through the crowd that gathers outside each day.  But then I thought about what all happens inside.

I'm repulsed by the part of the pro-life movement that involves picketing, holding grotesque signs and saying things like baby-killer.  Nor can I bring myself to put any energy into advocating for laws, policies and regulations that make the abortion process increasingly more difficult for women already set on that type of end for their pregnancies. 

But I have to be honest with the pro-choicers too: While I am sickened by what goes on in the crowd outside, I don't think I could stomach what goes on inside either.

I think Dr. David Gushee says it best:

I could tell that they [pro-choice activists] were drawn into this issue because they had caught a vision of the suffering of women whose pregnancies create a crisis for them, and the even more intense crisis that this would be for them if they had no legal recourse to an abortion. Their fixed gaze on the needs and the suffering of women impressed me, and I respected it. Anyone who cares deeply about the suffering of other people is on the right track — because that is one of the ways we demonstrate our love for the sacred persons around us.

I do continue to think that our gaze on this issue must be at least bi-focal — on the suffering pregnant woman, and on the developing human life that she is carrying. I do sense that decades of defending the rights and needs of the pregnant woman have trained many in the pro-choice side to avert their eyes from the child. But I also recognize on the part of many pro-lifers the parallel averting of gaze away from the woman and her situation as she experiences it. Decades of advocacy in a polarized debate have caused both sides to miss the intertwined sacredness of woman and child. And it is certainly clear to me that the only way those whose gaze is fixed on the child will succeed in saving more of them is if they learn not only to look at the woman, but to love her. (Read full post here.)

Ultimately, abortion cannot be controlled in clinics or courtrooms.  It is a decision made in the hearts and minds of mothers.  And whether or not we agree with abortion under any circumstance or in every circumstance, can we not see the anguish of each and every mother opting to terminate a pregnancy?

Should we not, then, make it our common goal to address and alleviate that anguish?  Just as it is not true that women today abort their babies because it is legal for them to do so, it is also not true that abortions are difficult for women only because of the regulatory (and social) barriers in their way.  A friend of mine says, "we all are pro-life."  In the same vein, no mother wants to have an abortion.

This is where we must consider:

If every woman was part of a supportive community where she was valued and honored, would there be fewer abortions?  Would women find the confidence and resources there to leave unhealthy or abusive relationships and to continue a pregnancy?  Would women find the strength and resources there to carry an unexpected child  -- even when it involves great sacrifice (every pregnancy involves sacrifice for the mother)?  Would women find the safety, the love, the solace there to make the best decision for them in the face of violence, incest, rape or complex medical complications?

It is my belief that any woman contemplating how to proceed with a pregnancy needs -- like all of us everyday -- a heaping helping of grace and mercy.  And if she chooses abortion, our love for her shouldn't change.  As a woman, I can definitely understand why women who are scared or alone or shocked or abused or sick or poor or all-of-the-above might choose that option. 

Laws and protests don't help those women.  And they won't change feelings or circumstances. 

But relationships will.  A world where a woman feels secure and accepted and supported is a world she will be more willing to birth a new life into.  This is where I think some of our pregnancy crisis centers get it right.

But we must take this line of thinking even further: If every woman and every girl was part of a supportive community where she was valued and honored, would there be fewer crisis pregnancies?  Would women who feel loved and who are confident in their worth seek out artificial love in bedrooms and backseats?  Would boys who are brought to manhood with integrity, reassurance, support and love know the true value of each woman and treat her with the dignity and devotion she deserves?

I thought about doing some research on this.  Just as one example, I've read studies about the impact fathers have on their daughters -- their education, their relationships, their engagement in drugs or pre-marital sex.  But, honestly, the numbers don't matter. 

I do think that many crisis pregnancies might be prevented if women felt loved and cherished.  I think many times women (and men) turn to sex for the love and fulfillment they were denied by those who were originally responsible for giving it.  And I also think women would be more willing to naturally complete their crisis pregnancies if offered a strong support system. 

But even if I'm wrong it doesn't matter.  The simple truth is that women shouldn't be poured into or nurtured so that they will refrain from risky or pre-marital sex or so that they will deliver their babies.  Women, just like everyone, should be loved and honored because they're intrinsically worth it. 

And no matter the cost of doing so, that -- loving people -- should be the most important thing.


The best use of life is love.  The best expression of love is time.  The best time to love is now.
-Rick Warren

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***The linked blog post by Jessica Harris is written with a focus on christian community, but I think her advice would be beneficial to any type of community.

Five Minute Friday: Mercy

        O give thanks unto the Lord; for he is good: for his mercy endureth forever.
O give thanks unto the God of gods: for his mercy endureth forever.
        O give thanks unto the Lord of lords: for his mercy endureth forever.
To him who alone doeth great wonders: for his mercy endureth forever.
       To him that by wisdom made the heavens: for his mercy endureth forever.
To him that stretched out the earth above the waters: for his mercy endureth forever.
        Who remembered us in our low estate: for his mercy endureth forever.
And hath redeemed us from our enemies: for his mercy endureth forever.
        O give thanks unto the God of heaven: for his mercy endureth forever.
-Psalm 136: 1-6, 23-26


Mercy is the cross and the price that was paid.
Mercy is sunshine and warmth when the world is falling apart.
Mercy is being held through the storm.  And being held even when I fight against it.
Mercy is patience and patience and patience. Overwhelming, awe-inspiring patience.
Mercy is not getting what they deserve.  Or what I deserve.
Mercy is love despite everything. Acceptance even though.
Mercy is the money to pay the electric bill.
Mercy is a piece of chocolate.
Mercy is decadence and simplicity.
Mercy is a night out.  A day in.  A job and time off from it.
Mercy is people and solitude.
Mercy is peace when it is unexpected.  Peace that is indescribable.
Mercy is a book and a cup of tea. 
Mercy is snow and fluffy clouds and flowers blooming.  The mountains and the oceans.  A harvest and blessings when there is no harvest.
Mercy is deliverance.  Unbelievable and unmerited.  Beautiful, sweet safety from what should have been.
Mercy is better than expected.  Wonderful, knock-you-off-your-feet surprises, packaged perfectly.
Mercy is always and forever.
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Lisa Jo Baker invites bloggers to freewrite for five minutes each week on specific prompts. And then to share with the world what's on the page when the buzzer sounds. Learn more about this anxiety-inducing freewrite flashmob here.

Don't Despair

Love recognizes no barriers.  It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.
-Maya Angelou



Last week I sat in on a presentation by local political cartoonist Joel Pett.  Two days prior, he was working on his day's drawing when he heard about the Boston Marathon bombing.  He scrapped his plan for that day and drew a symbol of terror running toward an unreachable finish line. 

Whether or not it was his intended message, I heard despair. 

I think in the minutes and days following the bombing many felt that emotion.

In some ways, feelings of desperation have been replaced with relief, celebration or at least determination to go forward.

But I still hear murmurings of despair around me.  Friends and strangers dealing with overwhelming circumstances, heavy local and world issues, unsure how to overcome.

I'll admit I've felt it myself.

In the fight for freedom of the world's 27 million slaves.  More enslaved people than ever before, despite the efforts of history's numerous hardcore abolitionists.  In the agonizingly slow journey toward global gender equality.  Being allowed to learn and to vote and to choose a spouse and a job is bittersweet when some sisters are being killed because of the value their culture places on testosterone.  In the work of child abuse prevention. When you make that your full-time job then turn on the news at home to hear about the death of a precious two year old.  Any child reached fades away when you see the pale blue eyes of the one you missed.

Your list is probably different from mine, but I do not think I am alone in sometimes thinking: 'Is anything even really getting better at all?  Is there even really any point in trying?'

When those doubts hit.  When I go to bed at night bone-tired, weary and defeated, this is the thing that convinces me to get up the next morning: Love.  It wins.  And always will.

That's not something I made up.  And it's not just a Pollyanna outlook. 

All of the great thinkers, change-makers, scholars, theologians, prophets and deities agree.  Love prevails.  It conquers hate.  It overcomes evil.  It rights wrongs.  Love has the final victory.

You can see it in love's response to tragedy.  The thousands who spontaneously rebuild the destruction of two.  More than once.

Love is often quiet.  It doesn't draw the same attention as wickedness.  But rest assured, it is at work around you.  If you look, you will see it.  If you close your eyes, you may be able to feel it.  It will fill up your empty soul.

And when you are bombarded by bad, when you are gripped by despair, remember that everything will be okay.  Better than okay, actually.  Love -- the most powerful force this world has ever known -- is working to make it that way.

Grieve.  Mourn.  Wallow a little (and a little more) if you need to.  That's just part of having a heart.

But then dry your eyes, square your shoulders and get back to the task you've been given on the side of love.

We'll get there.