Living With Lupus: Not Just Another Birthday

Sarah celebrated her 23rd birthday again for the 9th time last week.

All kidding aside her youthful looks mask what has been an unfair roll of the genetic dice for the rest of her life.

My wife suffers from Lupus and has known this since childhood.  Even back then the prognosis for those diagnosed at an early age is generally unkind. Some may see little to no improvement from symptoms even with heavy medication. Nearly an equal percentage can see a downward spiral into worsening health.

This is why birthdays can’t be taken for granted for anyone suffering from lupus/SLE or any other potentially deadly illness. But this year perhaps more than most. Sarah is nearing the completion of the capstone project for her PhD program – new research that will hopefully redefine how lupus patients can better communicate their symptoms through self-assessment for with improved treatment practices. Before I talk more about the future of this survey, I need to do my best to tell you what its like to live with lupus through someone else’s eyes.

I found out about my future wife having lupus on our second date.  I didn’t fully realize how lupus really could be a killer disease.  I simply saw how healthy she looked and couldn’t believe her condition could possibly be as bad as what I read online. What you will find when you ‘Google’ lupus is find a definition that includes a ‘butterfly-like’ rash on the face and as a chronic autoimmune disease…it can be fatal.

It was a small relief to find out her condition was considered a ‘mild’ case, though she was still prone to flares.  These are times where the disease ramps up its attack on your own internal organs and tissue.  This can and often will lead to hospitalization and/or aggressive chemotherapy treatments.

I remember Sarah telling me in so many words what it was like to have lupus:

“The most limiting is the exhaustion and fatigue.  Imagine you have the flu, every day with a feeling of fever, body aches and joint pain.  Now imagine you also have other elements of Lupus such as rheumatoid arthritis, Reynaud’s disease, occasional mouth ulcers and skin rashes due to stress or too much exposure to the Sun.”

Since she was first diagnosed, my wife takes 12 pills daily for a variety of symptoms as complex as the disease itself.  She carries a positive spin on things despite as she says, “even though you have this disease that’s trying to kill you, you can’t simply become a grouch about it or feel sorry for yourself.  Because you live in pain, doesn’t mean you have to become one.”

And that’s for a typical day for a ‘mild’ case of lupus.  I’m still floored thinking about it and saddened to type it.

As is the case living with any terminal illness even the ‘mild’ variety, there’s the always very real possibility of the situation worsening and doing so on a timetable you’re never prepared for.

“Carpe Diem”

That phrase may sound a little cliché, but its a motto we find ourselves sticking to when the medical odds are stacked against you. I’m happy to say in the seven years we’ve been together, we’ve certainly found time to love living life.

From the shores of Venice to Hawaii…

Here are more snapshots from our wedding day to traveling around the world from Europe, Alaska and most recently our trip to the Caribbean.

These best of times that are counterbalanced with those other times that seem to have become a little more frequent of late.  Those are the days where we simply stay at home as Sarah goes to bed taking another round of pill-based chemotherapy treatments.  Its on these treatment days when vacation and happier times are the furthest thing from my mind.  But not Sarah’s.

Suffering from lupus has yet to get in the way of her childhood dreams. She wanted to travel the world.  Check.  She wanted to stay close to friends and family through the years.  Check.  She wanted to become a college professor, succeeded and was quickly promoted to Dean of Academics in less than 3 years. Check.  She wanted to complete her PhD program, several times delayed by lupus-related flares that make simply picking up a book too hard on her limbs.  As of next August- check.  She wanted to be treated well by a decent man, and hopefully one day have a family of her own.  I can’t vouch for the former, but hopefully we soon will be working on the latter.

This is why I value birthdays far more now than ever before.  It isn’t a milestone that’s simply passed by, this is a very real celebration of life.  Or at least that’s what it should be.  This perspective I would’ve never known or fully appreciated until I met my wife.  Through the eyes of someone facing down a potentially deadly disease, now I find myself appreciating more every moment, every minute of life and even the pauses in between.

“…In sickness and in health…”

With her wedding band in view, this photo reminds me of my life’s oath to stay by her side no matter what comes our way. Also in view is a delicious dessert (one of our favorites creme brulee) reminding us to savor the moment while living one day at time with lupus.

Her perspective living with the disease has become the basis for her research to develop a more accurate symptom assessment scale for lupus. Sarah hopes the development and validation testing of her research will provide patients with a more accurate measure to communicate what ails them and what pains them daily, known as the Lupus Activity Scale (LAS).

LAS– potential for lupus patients to self monitor their flares and symptoms, empowers the patient to be active in their treatment and will help speed up research as it allows studies to monitor the disease activity cost effectively, non evasively and in a timely manner, no need to wait for lab results.” 

With any luck, by creating this measure of self-reporting symptom activity, Sarah will be providing a new tool for doctors and care takers so that other children and adults getting diagnosed with lupus for the first time hopefully won’t have to experience the weeks, months and years of medicine roulette and missed diagnoses.

I am amazed that she’s able to do this while taking chemotherapy for the very same disease she’s doing research on to benefit present and future patients.

Then again this is wife I’m writing about, I would expect no less from someone who lives life to the fullest no matter the odds.

Sarah’s Research Project and Survey Link – please forward to those you know who suffer from Lupus.

Helpful Links:

On Facebook: The Lupus Activity Scale support page
Lupus Foundation of Northern California
Lupus Foundation of America
Center for Clinical Trials Education (development and validation of the LAS study under the “psychosocial” section)

By robmayeda