A Life Interrupted by Lupus

“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 everyday 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 1998, and 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 “everyday” 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 me, if I was going to live happily, peacefully and successfully.

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 in June of 1998, 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.  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.

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, there are things that 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 common ground we share means everything in 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.

 

About the Author
Allyson Clayton launched her happy and healthy living blog Love Your Dash in February 2012, and in August 2012 independently published her first book: The Word Is Love – Lessons In Self-Acceptance, Relationships & Other Things That Really Matter.  She lives, laughs and loves in Northern California with her amazing husband and canine children Jack and Grace.  To learn more about Allyson and her work, visit www.loveyourdash.com.

 

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Comments

  1. Your post was music to my ears and therapy for my brain! I was hospitalized twice since January 19th 2013 with fluid around my heart and lungs. My pulmonologist mentioned Mixed Connective Tissue Disease, but have not been given a diagnosis. I see an Immunologist on May 7. This has been a long and sometimes scary road. Prednisone made me feel worse and I am now trying a different form of it. Everything you wrote about gave me some new insight. Thank you!

  2. I have had lupus for 15 years now. Also have kidney disease, and chronic pain, and many other illnesses on top of Lupus or because of the Lupus. It is so hard for me to deal with at times. there are days that I just want to give up. any suggestions? I am looking for a friend to have coffee with, go to a movie etc. Hard to find when you are always fatigued or sick.

    • Katie Cleary says:

      Hi Monica, it is so hard, I know. I have found old friends to be my best advocate because they are more forgiving. I founded the site because I was looking for online support – we are here for you too. It is an up and down thing. Keep smiling and know there are people here who get it!

    • Where do you live Monica?

  3. Dee Mamba says:

    Hi Monica, thanks for your inspiring story. Ive recently been diagnosed with lupus and Im so scarred the worst will happen. Ive started writting as well about my experiences it is so therapeautic as I feel that it is only way I can express myself.. It feels like people do not understand..I get irritated at times because of the symptoms and my eyesight is becoming a mess.

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