“Join Marla in the Fight Against Lupus.”
Late last month, I checked email to find this subject line topping my inbox. I’ve known Marla, a slim, vibrant beauty from Chicago, since college. She’s always been stylish in her size zero clothes, a graceful stride in striking heels or casual kicks. Perhaps it’s the dancer in her, she’s regal, shoulders back, long neck, even when frowning about some injustice. Whether in locks or a full ‘fro, her hairdo compliments her warm countenance.
From the mid-90s until two years ago when we saw each other at a soror’s wedding, this was my enduring image of her. In 2011, she hadn’t changed a bit. And even though her life is dramatically different now in 2013, much about her is still the same.
At 38 she is still warm, she is still vibrant, and now she is living with lupus.
Marla agreed to share a bit about her story, as there are still many people who know little to nothing about lupus. Rather than summarize or paraphrase, I’m using Marla’s own words here (quoted and in red). It’s her story, after all. I want her to tell it.
I began by asking her to define lupus:
Our immune system is supposed to create antibodies that protect our bodies from viruses, bacteria, germs, etc. Lupus is an autoimmune disease. This means that my immune system can’t tell the difference between the bad stuff and the good stuff. So it creates antibodies that also attack and destroy healthy tissue. Lupus can affect the skin, joints and damage major organs (kidneys, heart, lungs) by causing inflammation and pain.
It’s somewhat simple to describe what lupus is, but discovering you actually have it is another matter entirely. In 2012, I remembered receiving a text from Tavares, a mutual friend of ours. Marla had been in the hospital for days by then, but no one could say why. I ventured a phone call to see if she was up for a quick hello. Her voice was weak – practically a whisper. It was disconcerting to hear her that way. Ages passed before doctors put the pieces together and made the diagnosis. Marla describes this period as the scariest time of her life:
It was early January 2012, I got sick with what I thought was the stomach flu. I was having really bad stomach pains, fever, fatigue. This lasted for about four days with no reprieve. After the fourth day, I started to have chest pains and difficulty breathing. It was at that time that I decided to go to the ER.
I was seriously dehydrated because I hadn’t eaten anything during those four days. My blood pressure was really low and my heart rate was really high. They ended up giving my about 19 liters of fluid and I gained 20 pounds from that alone. I was first in the ICU (Intensive Care Unit) for about two days. They found out nothing was wrong with my heart, so I was sent to the regular area. Over the next 11 days, I was tested for everything under the sun. I had biopsies on my skin and lymph nodes. I had innumerable CT scans and x-rays. I had a colonoscopy. They could not figure out what was wrong.
Looking back, I can see that things were happening that I didn’t see as symptoms, but just as health issues. I would get my regular physical every year. Maybe starting in mid 2009, my blood test started to show that my white blood cell count was low. After retesting a couple of times and getting the same results, in mid to late 2010, my doctor referred me to a hematologist. More blood tests.
One of the tests is called an ANA test. It isn’t a definitive test for lupus – there isn’t one – but it can show that someone can be predisposed to it. I tested positive. I retested and it came back positive.
At this time, my doctor referred me to see a rheumatologist. Because I wasn’t having any symptoms of lupus, I would see her every 3 months just for testing (throughout 2011). White blood cell count was always low and I would always test positive on the ANA test. They wanted to start me on medication, but I was like, why would I do that, I’m not having any symptoms? Also, in 2010 I started having these pains on both sides of my body right under arms, and after seeing my doctor and not knowing what was going on, she referred me to a pulmonologist (lung doctor).
He thought it could have been caused by leftover scar tissue from pneumonia (hadn’t had it). We did a biopsy on my lung and nothing was conclusive. These pains remained off and on through most of 2011. So, I guess there were signs but I just didn’t know it. While I was in the hospital in 2012, I made all of this aware to my doctors. And after them finding nothing else, my final diagnosis was lupus.
Marla shared more of her story, including how her life has changed since her diagnosis, some of her favorite resources, and encouragement for others living with lupus. Read the second installment here. Marla’s walk is October 19. Please click here to find out more.