I'm Walking to End Lupus. Join Me?
In March of 2017 I started to feel like something wasn’t right with my body. I was exhausted all the time, I had severe stomach pain, was so nauseous that I couldn’t eat without throwing up. I lost 30 pounds in less that 2 months. I saw doctors, I visited the emergency room 8x with excruciating pain in my lower left abdomen, and was sent home after a few hours every time. The doctors said I had an ovarian cyst and that it was causing all my pain. The cyst went away but the pain didn’t.
In April, I went back to the emergency room and finally was admitted to the hospital because I could no longer walk or even stand without passing out. My resting heart rate when I was admitted was over 150 beats per minute. I had fluid around my heart and a severely inflamed and enlarged lymph node in my lower left abdomen. I had a traumatizing biopsy of that lymph node to rule out lymphoma.
Finally I was seen by a hematologist who took one look at me and said “Have you ever been tested for Lupus?” I said “No” and later that afternoon the blood work came back with a positive ANA test and I was diagnosed with lupus. I began treatment immediately, and was in the hospital the entire month of April, but I wasn’t getting any better. I was bed ridden for 28 days because I still couldn’t stand without passing out. My rheumatologist was the only one who would admit that there was something else wrong and that I needed to be seen by specialists who were more equipped to handle my situation.
On May 5, I was transferred from Advocate Christ to Northwestern Memorial Hospital. Within 10 days, I had a spinal tap and an EMG and was diagnosed with Guillan-Barré syndrome. It’s a rare autoimmune disease that attacks your nerves. My neurologist suggested IV antibody infusions to stop my antibodies from attacking my own system, so I received IVIG treatments for 5 days. After the first treatment I was 80% better than I had been in a month. I was able to stand up and for the first time in 30+ days I was able to walk. I got better and better as the treatments continued, and before I left I was able to walk laps around the floor. I had a kidney biopsy which confirmed that in addition to SLE, I had Lupus Nephritis (kidney involvement). I was finally discharged from the hospital on May 16, 2017.
After that discharge, I was admitted to the hospital again in the middle of July because I had gotten extremely sunburnt and that sent my Lupus into another flare, and my Guillan-Barré had also come back, but this time we had caught it before it got as bad as the first time. I had another spinal tap and another EMG done to confirm that the Guillan-Barré had returned and then started another round off IVIG treatments. I was discharged on August 3, 2017.
After that discharge, I was admitted again in October of 2017 because of the severe pain that was caused by the regeneration of my nerves after they were damaged by the Guillan-Barré and the Lupus. I could no longer sleep at night and had major trouble with eating and drinking because the pain made me so nauseous. During this admission I had ANOTHER spinal tap and ANOTHER EMG done. After I had those tests done the doctors suggested another round of IVIG treatments to see if it would help and then I was discharged.
My journey so far has changed my life and made me appreciate little things so much more than I had previously. I know that my lupus will never go away, but with help from my family, friends, and doctors, I hope to return to a normal, happy life.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!