My Experience With Lupus Nephritis
Last updated: October 2023
Living with lupus can bring on so many emotions throughout your body. Depression, anxiety, fear, pain, and so many other feelings. Lupus can appear in so many different symptoms that tend to have you confused. Living with lupus, I started to live in fear because I had no clue why my body went through the changes it went through.
I have realized that I could not overstress or overwork myself, and my body was showing me those signs. Before I learned this, I started getting sick and did not understand why. I had to realize I could not eat anything high in sodium or anything mostly with beef because my body could not take it. Eight hours of sleep needed to turn into 12 hours of sleep for my body to get the rest it needed for me to progress throughout the day. But, that was like me sleeping my life away.
Lupus nephritis fatigue
I was working at a store named Rouses. I was only a few hours into my shift, but I did not have any strength to stand and cash out my customers or ring their items up. I had no clue why. I was leaning over the counter when a customer called a manager cause they had realized I was not strong enough and I seemed as if I was going to pass out. They called my emergency contact on my phone which was my husband to come and get me.
When he came to my job, I was laying on the table where people dine-in. He did not move me until I lifted my head. I was so weak I felt the need to rest. I slept on that table for at least an hour, and when I woke up I literally had a puddle of spit on the table. My husband lifted me up and walked me to the car and asked me if I wanted to go to the hospital. I said no; I just wanted to go home and sleep.
My first hospital visit
He helped me to our apartment which was upstairs, and I slept for 2 days straight. When I woke, I felt as if I did not sleep and that did not feel right. I decided to go to the hospital to see if anything was wrong. The staff at the ER believed I had a urinary tract infection (UTI) and wanted to send me home on antibiotics. Those antibiotics did not work.
I started to experience really bad stomach pain and incompetence to hold my urine or bowel movements. Three days later, I decided to go back to the hospital and the ER sent me home for a UTI again. This time, I felt as if I was better off staying at the hospital. The last night at home, I took a bath in steaming hot water and felt as if the water was cold. You could see the smoke coming from the tub. My husband would bathe me and would say the water was too hot and that’s when I noticed my senses were off. When I finally made it to bed, I decided to sleep sitting up because I couldn’t breathe well laying down. Around 1 am that night, I couldn't breathe sitting up. My husband put on the lights, and my whole face was swollen. My eyes wouldn’t open at all and I told him I could not breathe.
My lupus was getting worse
He carried me to the car and started rushing me to the hospital. He called my family because he was so lost and confused and he didn’t know what to do. I was unresponsive. My husband carried me into the ER waiting room and the check-in nurse remembered from coming in every night. She requested that the doctors see me ASAP because she realized how much worse I’d had gotten.
When the nurse came to get me, a young girl passed out in front of me so they took her first. The check-in nurse realized that and called the ER doctor who was there all week. They rushed me to the back and I lost my sense of touch. I could not feel when the nurse put the IV in my arm. She was shocked and called the doctor. He remembered my name and was taken back because I didn’t look like that the day before. He came back with the admitting doctor and they decided to admit me.
Lupus nephritis diagnosis
For 2 months straight they did not realize what was going on until a nephrologist came in and diagnosed me with lupus nephritis. They started me on CellCept, and in a week I was getting so much better. I was leaking protein in my urine and was diagnosed with stage 5 kidney failure.
In those 2 months, I lost my job and my apartment. I had no insurance because lupus wasn’t considered a serious disease then. Here I was with no clue how my husband and I could get on our feet. The bills started to pour in and everything was left to him because I could not work. We were such a young, married couple – at 19 – carrying so much weight.
My second kidney failure
That was my first kidney failure. But in 2016, I went through my second kidney failure. This one was due to stress and a car accident. This kidney failure was completely different from the first one.
I vomited blood which led to my diagnosis of gastritis. I also ended up having a blood clot on my right lung. I started to retain fluid, which brought my weight from 135 to 185 pounds, and I couldn’t breathe. I couldn't urinate or make a bowel movement. I was diagnosed with alopecia and discoid lupus. Discoid lupus is the skin rash of lupus and it makes your skin sensitive to heat and UV rays from light bulbs or the sun. Sometimes, I looked as if I had third-degree burns. Blood clots would erode out of my skin. It got to the point where I didn’t want to go into public. I had given up on myself. I started chemo infusions once every 2 weeks and I was on at least 10 medications. Then, 10 turned into 15 because every medication had a reaction or side effect.
One day my husband convinced me to go out and society looked at me as if I was disgusting and contagious. Eventually, I learned to not care because I was loved by family and friends and they didn’t see me any differently. I started to pick myself up, and now I am feeling more beautiful than ever. I believe that I am still beautiful even with all my health issues. I want others to feel the same and be able to relate to me. I vowed to never let myself feel worthless again. Today, I am a beautiful, strong woman, and now I am moving forward and rebuilding those blocks to achieve my goals.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?