Lupus & Me: Dying to Know
Please help increase awareness of this disease. Someone is dying to know what’s wrong with them. People with lupus don’t always look sick. Hispanas and African American women are two of the largest groups diagnosed with lupus.
“Can you just test to make sure I’m getting enough oxygen?” I asked my doctor. It helped we had a history. She had been our family doctor for the last two years. I had sat in the very same exam room several times, just never as a patient. She was good with the kids but maybe I needed a specialist. She stepped out for a few minutes and I could hear a cart rolling in. On the silver tray were four empty vials. Another nurse came in and had me breathe into a tube several times. The test confirmed what the doctor told me, there wasn’t anything wrong with my lungs– well at least the levels of oxygen was within normal range. I had been sitting in the exam room for more than an hour and if my worries had been right, I should have passed out on the way to the clinic. Why did I feel like I wasn’t getting enough air? I was going through the motion of breathing in and out but my chest tightened and I felt like I was dying. I was scared. I would return to the clinic two more times that week and by the end of the month the emergency room. I wasn’t making this up.
I got a call from the doctor’s office. They needed to see me in person about some results. Earlier that month, I had seen a doctor at the walk in clinic. I was in her office today for something unrelated.
I had started taking walks at lunch time with a friend at work. I had friends before but with this new friendship, I came to understand that I can be a difficult person to befriend. I was great at superficial chatting. I was not comfortable with real discussion. I didn’t have anything to hide but had just grown up with the understanding that you never get too close or open up too much. There was always enough drama and opening my world up required more effort than my already exhausted spirit could sustain. This friend didn’t give up and for that I am ever grateful. Her persistence annoyed me. Why did she care so much about me and why wasn’t she satisfied with the spurts of quick witty banter that seemed to tide most over. I could always make a group bust up with laughter.
On one of those walks, she kept looking over at me. She asked how I was feeling. I gave her the default response but threw in a little reality because I knew she wouldn’t be satisfied with my half hearted truth. “Something’s wrong,” she said. I stopped walking. She turned around a few steps later when she noticed I wasn’t at her side. “I know something’s wrong! Don’t you think I know that! I just don’t know what it is and I just don’t want to talk about it,” I snapped back. “No, something is really wrong. Your face..your lip.”
All morning my upper lip alternated between tingling and numbness. I stopped drinking my coffee because the lack of sensation in my lip amplified my natural clumsiness. Brown droplets sprinkled on my shirt collar and a few down the front. As we were walking, something to the left of my nose kept catching my eye. It was like the patch of skin you can see of your own face if you cross your eyes except I wasn’t crossing my eyes. I lifted my hand to my face. It was 10:30 am and I know what my face looked like when I drove to work. I looked normal. The corner of my eye was catching the left side of my lip that had now swollen so much I’m sure people would have thought I got decked if they hadn’t seen the change happen with their own eyes.
My elbow had been swollen, hot and painful for several days. I would get home from work and hold my arm out straight to inspect the tender fluid pocket that dangled below the joint. That year I had countless random rashes, hives and painful skin conditions. Aside from the occasional red thick darkening that blanketed my cheeks and the bridge of my nose, my face hadn’t betrayed me much. I wasn’t having any trouble breathing but the swelling wouldn’t go down. At the walk in clinic the doctor told me I had edema. I was given large doses of allergy medication and went home for the rest of the day. That’s it. The doctor wasn’t overly concerned because I wasn’t having difficulty breathing. He said I could get some tests done with my family doctor or come back to the walk in if the swelling didn’t go away in a few days. I took over the counter anti-inflammation medicine for the painful elbow. “Sometimes our bodies do strange things,” the doctor told me. He told me to ice it and follow up with my doctor if it got worse.
I would leave my family doctor’s office questioning my sanity. There wasn’t anything wrong with my lungs even though I felt like an elephant was sitting on top of my chest. My oxygen levels were fine. The swelling in my elbow went away and I just felt achy. I was probably just getting the flu. Both doctors asked if I had been under a lot of stress recently. They were grateful for the answer my friend would not accept. I was fine. My lab results were fine. I would be on a cycle of fine and sick a bit longer until the day my body announced in no uncertain terms that I was anything but fine. Several months later a doctor would use a small plastic cup to show me the amount of fluid he estimated was trapped in the lining of my lung. Yes, I was stressed. Of course I was stressed. A patchwork of different doctors and disconnected medical records resulted in treatment of the different symptoms I experienced over the years. It truly takes a detective to connect the dots and my spotty history was just on the verge of becoming a Van Gogh.