From Diagnosis to Determination: My Lupus Story

By Allyson Clayton

“You have lupus.”

My doctor’s words cut through the air in the stark white of her examination room, and right through my soul. Now it was real. All the questions, the mystery, all of it just slipped away. Instead, a panic swelled inside my heart. 

I looked down at my feet dangling from the table.  My jeweled aqua blue flip flops and the bright pink of my pedicure contrasted so vividly with my summer tan.  My doctor continued to speak, but to me, her words were nothing more than a jumbled mess.  The white paper crinkled under my thighs as I moved to peer out the window.   There was a gentleman with a hot dog cart on the corner.  A gardener tending to flowers maybe twenty yards away to the right.  Dozens of cars turning in all different directions; so many people with things to see and do, going about the every day of life. 

What I would have given at that moment to know the oblivion and simplicity of the everyday. 

This day, my diagnosis day, began like any other.  It was an unusually humid July morning had morphed into a mercilessly hot afternoon.  Ironically what started so ordinarily would conclude extraordinarily.  There would be a new “every day” to get used to.  There would be lots of pain and uncertainty.  I was twenty-five years old, with big dreams on my mind and big experiences on my horizon; like travel and education and love.  Yes, big dreams and big experiences.  But that was before lupus.  This new reality would require adjustments and acceptance: an acceptance of my situation and of myself, if I was going to live happily, peacefully, and successfully.

Before the diagnosis

To start from the beginning, I need to go back ten months from the day of my diagnosis.  My symptoms revealed themselves gradually.  At first it was a persistent fatigue; that annoying, so-easy-to-dismiss symptom we all experience from time to time.  But it just wouldn’t go away.  The annoying quickly became scary when I couldn’t lift my arms above my head, or lift my head from the pillow.  I then developed an odd sensitivity to certain stimuli.  Odors, bright lights and loud noises would make me sick.  One day, while running errands, I spied a zigzag pattern on a woman’s dress.  Just looking at her was enough to keep me in bed for days; I suffered from nausea and debilitating headaches.   Eventually my symptoms graduated to joint pain and swelling.  Months later, red blisters peppered my cheeks, and red, dry patches popped up on my arms, scalp, chest and back.  My mouth would bleed, and I would feel exceptionally ill and tired after only ten minutes outside under the winter sun.   I experienced hair loss; not random patches falling out but instead a general overall thinning first noticed when my barrettes slipped out so easily.

Finally, I experienced fluid retention that went way beyond the usual hormone fluctuations or indulgence in overly salty food.  The edema and discomfort persisted, and my doctor began to suspect the possibility of autoimmune disease, lupus specifically.  My blood pressure was rising and there was protein in my urine, all signs pointing to kidney problems.  With an urgency I hadn’t seen in her before, she ordered a battery of tests, imploring me to get them done as soon as possible. 

The diagnosis: Lupus SLE

All came back in time for that July appointment, and all revealed a myriad of issues, collectively confirming a lupus diagnosis.  My blood showed anemia and a very low white blood cell count.  The standard anti-nuclear antibody test and anti-DNA antibody test were positive, suggesting lupus.  The realization finally came when biopsies of my skin and kidney revealed deposits of antibodies in my tissues. 

Healing therapies and a new mindset

Here I am, nearly fifteen years later.  Since that fateful day, I have had my moments of stable health and normal immune functioning, but I have had many periods of brutal flares.  When it happens, lupus decides to make me extremely tired.  It settles into my joints, making simple movements and activities nearly impossible.  I sometimes suffer from pleuritis and pericarditis, making it difficult to breathe or feel energetic; but overall, it is my kidney function that suffers consistently.  The unpredictable nature of lupus has forcibly shaped my choices, too.  I have had to rethink things like graduate school, career paths, and pregnancy, choices that have proven painful at times.  Thankfully, I have found joy and opportunity in other aspects of my life. 

Conventional drug therapies have not been helpful in my case.  Side effects have been difficult to deal with, and some drugs have been cost-prohibitive.  Early on in this journey, I tried steroids, prednisone specifically.  I experienced weight gain and other changes in my appearance, and I really wasn’t feeling better.  Anti-malarial therapies were suggested, but side effects were a concern.  My most recent attempts with conventional drugs included immunosuppressive therapy.  I tried CellCept for several months.  The aggressive regimen did nothing to improve my symptoms.  It made me very sick and its cost was considerable.  It simply wasn’t reasonable to continue. 

Despite the failure of conventional medications in my case, some things have worked for me, and have worked very well.  I have an awesome, driven and dedicated primary doctor who stays on top of the latest research and coordinates all my care with colleagues she knows and trusts.   In addition to being female, she is also young, and I believe that the common ground we share means everything to the success of our communication.  Having her in my corner is healing, more than words can truly express.  I also have the love of a wonderful spouse and mom.  My friends understand as best they can, and it means a lot.  And I have two beautiful, love bug pups who comfort me with every wet, loving kiss. 

I do the usual things that we lupus folks should do to feel better and stronger.  I make sure I get the rest I need.  I stay out of the sun.  I avoid alcohol, and I try to stick to simple, easily digestible foods that don’t tax my system.  I try to limit my sugar intake, prescribe to a mostly vegetarian diet, and place an emphasis on healthy fats.

Acupuncture has worked wonders in managing what I call my “secondary” ailments.  When I receive consistent treatment I sleep more deeply and my digestion is better; my pain is lessened and overall I feel that my emotions are stronger and my life feels less heavy.  I am also working hard at mastering the art of letting go.  Letting go of things like toxic relationships, being rigid, and trying to be perfect.  Because if lupus teaches you only one thing, it teaches you that life doesn’t always go as planned. 

I also created my own career. After way too many flares and dark days, I had to have a complete say over my hours and workload.  In February 2012 I launched my happy and healthy living blog, and in August 2012 I independently published my first book.  I have many more planned, and the future looks bright.  It is empowering to know that I am my own boss.  The freedom allows me to embrace my good days and better manage my bad ones.

What is the best medicine of all? Gratitude for everything that is good in my life. Knowing I matter, and accepting the reality of lupus as part of my journey.  I realize now that perceived limitations are only that, perceived.  Ultimately, lupus opened doors I never thought possible, and gave me chances I never saw coming.  It has been quite an evolution.  Once a scared twenty-something, I am now a soon-to-be forty-something with a growing wisdom and appreciation for the things that count. 

And I’m still here.

Strong and confident.

Full of life.

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