Thursday, May 1, 2014

Having lupus, Part 1: The horrific mystery disease

Do you feel pooped? Do you occasionally get piercing headaches behind your right eye? Do you bore your friends to death by going on and on and on about how much work you have to do? And have you been so rushed and run down that your personal grooming and general appearance have deteriorated to the point where your friends politely avert their eyes when you enter a room? The good news is there are only two possible explanations for these alarming symptoms: You have contracted a horrific mystery disease for which there is no possible cure or, and this is only marginally better, you are one of those people who are simply doing way too much.

- Bradley Trevor Greive, The book for people who do too much

Johnie and I were at a bed and breakfast in Bloomington celebrating seven years of marriage.  I wandered down to the library and found on the bookshelf a little hardback entitled The book for people who do too much

I had planned this particular anniversary celebration with rest and relaxation in mind.  I had felt stretched thin for months.  I craved down time.  Obviously, the book caught my attention. 

I could tell it was going to be filled with wit and sarcasm, but when I came across the quote above in the early pages, it took me a few minutes to muster any laughter.  I do have all those symptoms -- and more.  But my problem is the first one.  In a very real sense.  Lupus is often called the cruel mystery.  The book actually wasn't for me after all.

Adjusting to a lupus diagnosis has not been easy.  In fact, I still have trouble accepting it. 

"Maybe he'll tell me he's decided I don't have lupus," I told Johnie on the way to my most recent appointment with my rheumatologist.  And as we chatted, I hedged the subject with Dr. Lewis.  He wasn't expressing any doubt in my diagnosis.  So I finally said, "I'm having trouble accepting this.  I keep hoping you'll say maybe I don't have it."

He just nodded sympathetically.  Perfect opportunity and he didn't take it.

I am not sure if it was the lupus diagnosis, the other issues I was dealing with when I received the news or a combination of it all, but I feel like I am a completely different person than I was a year ago.

In many ways better, and in some ways maybe not.

After a sarcastic conversation about my current condition a friend sent an e-mail asking: Seriously, how are you doing?

I hadn't yet actually put into words how I was doing.  I told him I felt like there had been a fundamental shift deep inside me as a person and that I was still adjusting.  I told him I was thankful for having what I think is a better perspective on life and for being able to appreciate things I took for granted before.

Like the mornings that I wake up and don't feel sick.

Like being able to walk without my muscles aching.

Like having the energy to cook and, yes, even to clean.

Like going a full month without a migraine.

Being able to wear contacts.

Having energy after 3 pm, or after going to the grocery store.

Being able to think clearly.

Being with friends and family, going on a date, seeing plans through and not feeling sick.

Not having painful, ugly spots on my face.

And on and on...

I am still getting used to this new skin I feel like I'm living in.  My knee-jerk reaction to the diagnosis was to hold on to the parts of me that I valued.  In the "I have lupus" conversation with my college roommate, I assured her (and myself) that I would not change the important things.  I would still love and celebrate food.  I would still hike the mountains of my home.  I would still laugh and joke and feel emotions dramatically. 

But, I feel like every corner and crevice of my life has been touched.  I feel much less determined to hang on to the things that made up the old me.  And as I reflect on the changes, I thought it might be appropriate to take the month of May -- Lupus Awareness Month -- to share these first steps of my personal journey with chronic auto-immune disease. 

May you find hope, encouragement, revelation or companionship on your journey.


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

Click on the links below to read more:

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.