My lupus story: How I was diagnosed with lupus

by Laguna Lupie

I was officially diagnosed with SLE or lupus on December 4, 2012. This was the day when I got the results of my lupus panel tests.  You never forget the day you are diagnosed with lupus.  It is a day that is forever burned into one’s memory.

I remember the long car ride to the hospital that day, how silent we were, how listless I felt.  Not really feeling anything and just looking at the trees outside the window with a wonder I didn’t think possible on that day of all days.

Truth was, deep down, I expected it.  I had a positive ANA with quite a high titer.  And, according to my research, I had the classic symptoms for early onset lupus – joint pains and swelling with fever and persistent rashes all over my body.

But what lead to the lupus diagnosis were a series of (what I then thought were standard) lab tests.  I took the tests upon the prodding of my brother, an internist who is a practicing ER doctor in Australia.  I had just given birth to my second son August of 2012 and we were alarmed that it was already a couple of months after the birthing but my c-section stitches still refused to heal, with wounds that would reappear day by day.   We thought perhaps I had become diabetic.  But early November I became arthritic; I couldn’t stand from the pain and would wake up miserable with swollen hands accompanied by fever.  My brother then texted me a list of lab tests I should have done immediately. One of the many tests he ordered for me was an ANA test (which I found out afterwards is the definitive test for lupus, with 90% of lupus sufferers testing positive for ANA).  I didn’t pay much attention to the tests when I had them done, I thought I had arthritis, yes, but I didn’t take that too seriously.  After the tests were done he referred me to a rheumatologist.  I thought, yes, a rheumatologist handles arthritis, and that was that.  I was busy preparing for my son’s upcoming baptism that December 1st.  I was excitedly looking forward to all the relatives and friends coming in from out of town to attend the event.  I was focused on that and didn’t much care about anything else during that November.

Then came the day to get the lab test results and go to the rheumatologist.  I was so happy that day.  We decided to sneak in a trip to the mall before going to the doctor, I was determined to find the perfect baptismal outfit for my baby boy on that day, and I did– I found the perfect outfit that day.  It was a nice “little prince” kind of onesie with champagne silk shorts and a lace ruffled shirt and a cute little bow tie made of silver cloth.  Oh it was wonderful! I still smile at the memory of finding and buying that outfit for my baby.

Then we went to the doctor.  It felt like a routine visit. I hadn’t done my research on rheumatologists and only assumed I had arthritis and would be prescribed with maintenance medications for that.   After all a year before, around December of 2011, I had a similar arthritis attack but fortunately my brother was on vacation in the Philippines during the holidays and he prescribed me with a drug called prednisone for a week and the damn pain and swelling went away. Just like that!  It felt like a miracle that time because prior to taking those meds I couldn’t stand up and I would cry from the swelling and the pain.

After that episode, I thought to myself well it’s mighty convenient having a doctor in the family and soon forgot about the arthritis and got back to work and my busy life.

It was with that kind of nonchalance that I entered the doctor’s office, not knowing that visit would change the rest of my life.

When we finally met the rheumatologist, I showed him my lab test results and told him it was my brother who had them ordered.  He took a quick look at the results and showed me the sheet for the test called ANA or anti-nuclear antibody test.  It said positive with a 1:600+ titer (I forget the exact figure).  I looked at the doctor quizzically but rather than explain the ANA test to me, he said that he needed to order another series of tests to confirm something.  I remember him saying “lupus panel test” and then quickly stating “now don’t panic, this just means we need to verify something that this ANA test indicates, it doesn’t necessarily mean you have lupus already.”

I remember feeling light headed and hearing that doctor’s voice as if it came from far away.  I know only one thing about lupus– it killed the sister of a close friend.  She died within two months after exhibiting symptoms of the disease.  She was twenty six and left behind a two year old daughter.  I remember going to her wake and wondering why they chose to dress her in her wedding gown.  She was a newlywed and such a pretty bride.

I don’t think I cried on the way home after that doctor’s appointment.  I was quiet.  I remember my husband taking furtive glances at me and I couldn’t do anything to comfort him.  I felt so numb and empty, I didn’t have the strength to even take his hand or look him in the eye.

When we got home my mother was eagerly awaiting news on the doctor’s visit.  I told her quickly and dispassionately that I might have lupus and I was to undergo another set of tests to verify that.  I went to our room– not even bothering to turn on the lights– pulled up the laptop and googled lupus.  One by one the definitions came up –symptoms, diagnosis, prognosis.

I looked up at an old graduation picture of myself hanging forlornly on the wall.  I peered at that younger version of myself, barely visible, the flickering lights of the highway outside my window bouncing on the picture frame.  It was at that exact moment when I realized I could be dying, that I have a dreaded disease that is incurable.  And that was when I finally cried.

I suddenly felt all the fear and unbelieving despair of someone who knows, with finality, that death is on one’s doorstep, waiting to end everything.

I still shudder remembering how I spent that night. Unable to sleep and crying intermittently every few hours.  Walking about the house, looking at my two boys sleeping.

For days after that, I couldn’t look at or touch my two month old baby without breaking down.  It was just too painful.  We tried so hard to have that second baby, when he came it felt like a wish come true. Like all the pieces coming together to make life happy and our family complete.  To be so blindingly happy and to have all that happiness snatched from you.  It is every new mother’s nightmare – come true.

The day after, I held my son’s baptismal outfit thinking  I was so happy when I bought it, and then to forget that happy moment completely by nightfall…I thought of the word KisapMata ( which is also the title of a famous Filipino movie directed by Mike De Leon), in english it means in the blink of an eye, and thought to myself that it’s really true — a person’s life can change dramatically, irrevocably, in the blink of an eye.

ImageMy beautiful boy’s perfect baptismal outfit.

A week later I took the lupus panel tests and then a couple of days after my son’s baptism (oh that happy day I looked forward to with such innocence!) we went back to the hospital and confirmed that I had lupus.

In hindsight, my brother probably suspected lupus all along but he never told me.  I sometimes blame him for everything.  Thinking I would never have found out if he never insisted on those tests.  But most days I thank the lord for my Kuya.  Lupus is hard to diagnose and we wouldn’t have found out early if it weren’t for him.  At least now, I am on maintenance medications and I know what’s wrong with my body.  Maybe finding out earlier will help me stay alive longer.

A lot has happened since then, and these past months have been a long arduous process of getting back my bearings. Of getting over myself and continuing with life despite lupus.  There are days when I feel  great and others when I refuse to leave my bed.  It is never the same.  But now I feel with acuity the preciousness of each moment and I try everyday to find that calm, steady voice that says: “life goes on and everything will be alright.”