Why I Call My Little Sister My Big Sister, Part 2
During my most recent brush with death in 2018, my sister was right there by my side. In January 2018, I suffered from a very severe headache while driving. My entire body felt as though it was on fire. It also felt as though needles were puncturing my body and fire ants were crawling through my skin. When I got home, I laid in bed. When I woke up 24 hours later; my partner got home to find me in bed and the sheets stained because I defecated on the bed. I missed calls from the office. I missed calls from my family and repeated calls from coworkers. My partner talked to my doctor and my mother. He drove me to urgent care. In the middle of the examination, I passed out and almost fell off the examining table.
More tests needed
The next week, I felt better physically but not mentally. The reason, a few weeks prior to this ordeal my rheumatologist suggested I be screened for cancer of the bladder and cancer of the kidney which is a side effect of Cytoxan treatments. The amount of blood appearing in my urine was more than normal. So after suffering from what I thought was the flu, I went forward with the bladder screening procedure. The urologist gave me a large antibiotic before the procedure because I was on steroids. The bladder looked normal but she did take some biopsies.
On the way home from the procedure, the strange headache and burning sensation returned. I was an hour from home so I pulled off the exit ramp and into an identifiable parking lot. I called my mother and before I knew it my sister was moving me into the back of her car. After arriving at the emergency room, my sister wheeled me into the restroom while we waited for registration to call my name. I passed out in the restroom just as I had done at home and in urgent care. The next thing I know, I was on a gurney with medical personnel all around me poking, prodding, and sticking needles in my arms. My chest began to hurt and I had trouble breathing. The doctors moved me to a make-shift intensive care unit until the hospital could find a room. I was transported to another hospital by ambulance. When I arrived at the hospital at around 2 a.m., my blood pressure dropped to around 55/39.
My sister's support
My family sat in a vigil in the intensive care unit for the next few days. My sister brought in her laptop so that I could watch Netflix. We would watch shows on the television. I was eventually diagnosed with a septic shock. The doctors said that my immune system was too vulnerable to attack whatever infection I developed, but that the very strong dosage of antibiotics that I took the day of that medical procedure saved my life. I remained in the hospital for a while and went through 4 months of physical therapy and medical leave.
My sister has always been by my side. Over the last year, my sister has been dealing with her own chronic illness. She was so strong and so brave, she did not was to express her level of pain. She kept it from me and my parents. She does this to protect me, but it is my time to guide her and to help her. Today, I got out in my front yard and planted some bushes, a task that she would have normally undertaken. Tomorrow, I think I will buy her some headscarves and maybe on Sunday, I will bring her a few gifts. I won't be able to take care of her as she cares for me, but I will do my best because she is my sidekick. One thing I have learned as one living with lupus is that the people that cross our path are important. The bonds we make are everlasting. The relationships we have evolve, adapt and become closer.
This entire experience taught me not to take my relationships for granted and to not take for granted the people I meet in life. In support groups and therapy, the topic of grief often comes up. A belief that one must grieve the life before lupus and one must reinvent themselves into a person living with lupus. Martin Luther King, Jr. said in a speech the day before his assassination, “Only in the darkness can you see the stars.” – I’ve Been to the Mountain Top speech, 3 April 1968, Memphis, Tennessee, USA.
My sister and I are closer than ever. We have taken trips. We watch movies. I count her as one of my most trusted confidants and now I follow her lead in being confident, extroverted, and take the opportunity to explore the world around me.
Have you used biologic treatments to manage your lupus symptoms?