My Long Journey to a Diagnosis: Part 1
Last updated: June 2022
I have grown to love sharing my journey. At first becoming paralyzed was a hard pill to swallow. I could not believe that my independence was taken away from me after going to sleep for the night and waking up to my new life.
Learning to embrace this new reality
As I started to pray more, I continued to have faith and embrace my journey. I began posting videos and pictures on my social media channels. I saw how much encouragement these posts received. This was all in addition to what my mom and some of family and friends have given me. I thought to myself, "If sharing my videos touch one person then I feel like maybe Im moving closer to my purpose that God has set for me." It hasn’t been an easy journey. I’ve definitely had blood, sweat, and tears and then some, but I will continue to fight as long as I’m able!
How my NMO journey began
In 2012 I started feeling very nauseated, which I thought was a stomach virus that was going around. Everyone that had it either had diarrhea or threw up and felt better shortly after. I never had either of those symptoms; I just had really bad nausea, which cause me to have to carry a cup around because my mouth was very watery. I was a full time college student plus I had to work, and I was getting worse and worse. I was in emergency room twice a week getting sent home because they couldn’t find anything. This went on for about a month.
The beginning of several hospital stays
During a week of exams, my teacher saw my face and immediately called 911. I went to the only hospital that I hadn't yet been to. They kept me and told me that the problem was my gallbladder, so they took it out. After that procedure, I couldn’t keep anything down, not even water. They sent me home because they couldn’t find any further cause of my issues. Two days later I was in ER at yet another hospital. This time they told me I had pancreatitis. They also mentioned that it looked like I was a heavy drinker. That surprised me because I don't drink. They ran all types of tests and I was, between both hospital stays, I'd now been hospitalized for two weeks. The hospital later told me that it looked like I had some type autoimmune disease, but they didn't know which.
They told me I had scabies
At this point, I'd been in the hospital for a total of five weeks. By the time I was feeling better it was June. I went back to school and work, but by New Year’s Eve the same thing happened again. I was sick for a couple of months and they put me on prednisone. After some time, I felt better, and toward the end of May I went back to where I left off in cosmetology school. In August I began experiencing nausea and uncontrollable vomiting. This time the hospital only kept me for a day. A couple weeks later, my back was so itchy and nothing was helping! That weekend I was drinking Benadryl thinking I was having an allergic reaction. I remember leaving school, telling them I'd be back, and once again went to the ER where I was told by the doctor that I had scabies. I argued with this physician but he sent me home anyway with prescription for scabies. When the pharmacist told me that the cost would be $160 without insurance, I knew that medicine was not getting filled.
I couldn't wait any longer to be seen
The following day and night I felt horrible. I had an appointment with a doctor I'd been seeing for a few months who was treating me for lupus, however I couldn’t wait until that late in the afternoon to be seen. I was hoping to see the doctor earlier than my appointment time, but that hope went nowhere. My cousin dropped me off at emergency room where I sat for 9.5 hours. I was miserable! I called my mom and begged her to get someone to pick me up because I felt like I was going to die. I was picked up and as I was walking toward the door to leave I heard a nurse say they had a bed for me! I remember dismissing her and telling her to forget about it as I walked out of the door.
I had to force them to keep me
I walked into the next ER and had to persuade and force them to keep me after they told me that what I had was just a rash. Suddenly my blood pressure went up to stroke levels, I had nerve pain down my legs, and I heard the doctor say I had shingles. I was finally admitted after having to give an iron sample which I knew was for drug test, which is a topic for another day. I woke up the next morning not able to void. I felt like, if I pushed on my bladder, it would burst! I begged for a foley to empty my bladder.
They didn't know if I would live
The following day I woke up paralyzed from chest down. I was given an MRI and was told my entire spinal cord was swollen. I was in the ICU for 6 weeks, and was told I had a 50/50 chance of living. I was receiving plasmapheresis and blood transfusions. Here I was, 29 years old, and a rhumetologist diagnosed me with lupus and began treating me. I was told I had to get a low dose form of a chemo drug to restart my immune system. Once I got my first dose, I was able to be transferred to a rehab unit of the hospital. I was told that it was uncertain if i was going to regain my feeling and mobility, but if I did, it would be a long recovery. I don’t think I could even fathom how long that recovery would be.
Stay tuned for part two for a continuation of my diagnosis story.
Has NMO impacted your ability to keep a job?