Tuesday, November 5, 2013

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.