living with lupus, day by day, moment by moment

“It’s not like you are going to die. . . .”

I remember thinking I needed to exercise.  I was on a ski trip in Utah and I could not keep up. I was short of breath, my chest was hurting and my body was aching after one run on the slopes.  I called it quits, had some chow and went to bed thinking I must just be tired from working long hours, recovering from the holidays and flying. The next day, I woke up with incredible chest/back pains.  I told my husband to press a huge book on my back while I layed faced down to try relieve some of chest pain. I also tried getting a massage. None of these remedies helped, but again, I thought it was just a regular sort of body pain.  Nothing serious.

Then I woke up in the middle of the night crying.  Actually, I woke up wailing. I did not know what to do with myself because I was in so much pain.  As soon as the sun rose, my husband and I took a cab to the nearest hospital.  They ran a number of tests all morning.  At the end of it all, a doctor came in, and proudly announced that they figured it out — I had pneumonia.  What I found amazing is that they delivered this news like they won the lotto (for figuring out the cause) and as if I just had a common cold (no explanation whatsoever as to what pneumonia is).  This was the beginning of a long line of my interaction with doctors, where devastating news is nonchalantly delivered to me as if they were delivering news of the day’s weather.  To make the long story short, I stayed out the rest of my vacation in Utah, then flew home to NYC, went back to work, and in a short while, was hospitalized.  I had my lungs punctured and fluids drained. I was in debilitating bed rest for about two months.  My pneumonia was pneumonia pleurisy and possibly a flare.

When I returned to work, I started to have muscle and joint aches.  As if I didn’t learn my lesson the first time, I believed it was because I was out of shape again.  I thought the prolonged bed rest led me to these weird joint and muscle aches. I was also unreasonably fatigued all the time and had to steals little naps just to get through the day, but again, I reasoned that the pneumonia must have taken a toll on my body.  It wasn’t until I could no longer sit up on my own, or lift my arms to get dressed, that I finally went to see my doctor.  My primary physician, Dr. F, ran some blood tests and suspected that I might have lupus or sjogren. He referred me to a rheumatologist, Dr. G, who confirmed that I had “mild lupus”.

I was more confused than devastated. Lupus? What is that?

So I asked my rheumy Dr. G., who advised that I do not scare myself with websites and support groups and instead, referred me to an old pamphlet from the 1970s.  He stated that nothing really has changed since the pamphlet was published.  He then sent me home with a prescription for a low dose of prednisone.

I had lots of questions after reading the short pamphlet.

So I then turned to Dr. F with my inquiries, to which he impatiently replied — “It’s not like you are going to die from lupus!”

I took odd comfort from these unsympathetic comments.  After all, these are doctors and they must know what they are talking about, right?  Besides, I thought, my life is too busy to make room for lupus.  If it’s not going to kill me, what’s the big deal?

This was the wrong start to being a lupie.  Since the diagnosis, the mismanagement of my disease led me to come face to face with death and it was an ugly fight.  I have survived but not without a heavy price.*

*If anyone reading this has been newly diagnosed with Lupus, I urge you to become an educated lupie.  Please reach out to your local support group, the Lupus Foundation of America or even to me.  Avoid websites until you have read some books on lupus and living with lupus.

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