It started with a sudden outbreak of eczema when I was 12. It was everywhere, head-to-toe. Some rashes felt like sandpaper, some felt like leather, and some had a bumpy texture. Imagine the itch. It was a miserable experience that I would go on to live with for 6 years.
The lymph node on the side of my neck was comparable to the size of a golf ball. It didn’t hurt. It was just a big, ugly, protruding gland. I had noticed it’s formation for a long time, but I wasn’t really alarmed until I noticed it’s growth.
My mother was very proactive. Every time she noticed, or I pointed out a symptom, she was writing in a journal. I remember how she missed so much work taking me to different specialists. It was hard to tell that my mother had a job at one point.
I was seeing dermatologists, endocrinologists, rheumatologists, hematologists, you name it. I might have even seen an oncologist at one point. My eczema had gotten so bad that it was feared that I had skin cancer. I was sent to the children’s hospital, where I had a skin biopsy. No cancer was detected. I didn’t really understand what was being discussed at these appointments. I just knew that I was I was always having tests run, procedures, surgeries, and hospital stays.
At 13, I had an operation to remove the lymph node in my neck. This was my first surgery. I remember my parents arguing over my upcoming surgery. My mother just wanted answers, but my father was worried that I would have a giant scar on my neck. I ended up having the surgery at a hospital on a Saturday. I remember being terrified. My father had to go to work, but he was there before I went into the operating room. He kissed me on the forehead before I disappeared behind those heavy double doors.
I woke up with a stiff neck. My mother was there, waiting at my bedside. After spending some time in recovery, I went home.
I had a follow-up appointment on Monday with some ologist. I remember being whisked out of the room. My doctor asked me to go take a walk while she talked to my mother. After awhile, the appointment was over. We loaded into the white Dodge Caravan and went home. At least, I thought we were going home.
Our destination was the hospital. I immediately went into panic mode.
I started crying, and I refused to get out of the van. My mother had to call my father to calm me down. It didn’t work. My mother got me out of the van anyway. She checked me in at the registration desk, and we rode the elevator to my room. This was my first hospital stay.
I was in the hospital for several weeks. I hated it. Every time I turned around, I was being stuck with a needle, or wheeled to a different room for testing. The hospital was 45 minutes away from home, and my mother tried her best to make it as much as she could. She still had kids to care for at home. My mother would bring me food because I hated the hospital food. One morning , I woke up to her by my bedside. I wasn’t expecting to see her face. That’s when I learned that I had a medical emergency in my sleep. My dad worked about 15 minutes away from the hospital, so he would come see me after work. Sometimes I didn’t notice because it was very early in the morning. During one of his visits, I woke up to the smell of chicken. My daddy was throwing down on some KFC. This was at a period of time when I was on a strict liquid diet. I was mad. All my father could say was, “I’m sorry, Antonia. I’m hungry.”.
I was in a children’s unit, so I was able to play video games and interact with other patients. There were even computers for kids to do online schoolwork.
All of this time, I had missed so much school. I missed several months of 8th grade and several months of 9th grade. I was homeschooled two days out of the week. My mother would drive me to the library to meet with my teacher.
Returning to an actual classroom in 9th grade was an odd experience. It seemed that no one knew why I suddenly dropped off of the face of that planet. It took me awhile to get readjusted and reacquainted. I was still dealing with severe eczema, which made me feel very self conscious. Some days it hurt to walk because my skin was so dry. Some days my skin would crack and bleed. My skin itched so bad that I would scratch my living skin off. My skin had gotten so thin that it didn’t even hurt. I still have scars from that. My skin would literally evaporate moisture. It still does, honestly. I almost never exposed skin that wasn’t on my face or hands because I was ashamed of my scars and patches. Even when I visited family in Florida, my extremities were covered. I didn’t care what the weather was.
I was trying to have a normal social life, but I was just so awkward. Let’s just face it though, nobody was checking for me before I got sick. Only a few close friends knew what I was dealing with. Those same few friends visited me when I was home bound.
I had another surgery in 10th grade. This time, a lymph node was removed from under my arm. This surgery was outpatient, and I went back to school the following Monday.
According to my medical records, I was diagnosed with Rheumatoid Arthritis when I was 15 and Lupus when I was 16. My mother was really good about keeping up with important papers…. Maybe she was really bad at throwing things away.
My eczema cleared by the time I was 18. My mother was able to find a Rheumatologist who recommended a treatment combination that actually worked. I still had occasional rashes, but nothing worth crying about.
I had no major flares until after I had Avery. I remember always feeling sick and in pain. I tried to stay at my job through all of this, but I always felt dizzy and uncomfortable. This time, I wasn’t pregnant. I ended up quitting my job, and I was home bound again. A few friends/coworkers came to visit me during that time. I went to see a Rheumatologist for the first time in years. She was a very nice doctor. I carried all of my medical records with me. The student doctor browsed the thick folders. I told her what some of my symptoms were. One symptom was something I never experienced before. I had hard lumps beneath my skin. The student doctor gently told me that they were due to my weight. They were not.
My actual doctor walked back into the room and examined me. After a few questions, she ordered bloodwork and gave me a prescription.
About a week later, I received an email that confirmed both of my diagnoses. I was given another prescription for a steroid. I’m no stranger to steroids. I took my first one in 8th grade. After several months, I was able to get my life back on track.
Today, I am feeling like myself. I still have flares, but they have been manageable. My worst flares are triggered stress. When I’m not feeling well, I feel like I’ve been run over. I’m achy, swollen, my lungs hurt, my rash appears, and I have no energy. I have to force myself out of bed on days when Donnie goes to work. When I’m not having a flare, I feel pretty good. Arthritis will always cause the occasional ache or pain, but my joints are still functioning well.
Just because you don’t see my sickness, that doesn’t mean I am not sick. You can’t see how my body attacks me internally. My immune system is literally my enemy. I can have the same common cold for many months.
God is good, however. He has been very good to me. I am still able to live a pretty normal life. My joints are on fire this morning, but I’m about to get on my bike and have a productive day.