LIVING WITH LUPUS | Isaac N.

I’ve been sick for as long as I can remember. I constantly missed school as a kid, then later missed work as an adult because I just kept getting sick. I was tired all the time, constantly had flu-like symptoms, then I started developing joint pain that just kept getting worse. It’s when I started living on my own that things really took a turn for the worst though.

I moved into my current apartment in December of 2022. For the most part, everything was fine at first —as far as symptoms go, nothing I wasn’t used to. Some fatigue here and there, muscle and joint pain, but not too much to handle. I was able to work, go out, raise my puppy, cook, clean, and so on, but as time went on, my health deteriorated pretty rapidly. I started missing work because of recurrent tonsillitis, I would find myself keeled over for hours throwing up for seemingly no reason, I was dealing with dizziness, blurred vision, fainting spells, etc. I kept telling my family this doesn’t feel normal, nobody should be getting sick this often, but they were convinced my lifestyle was responsible.

In August of last year I started complaining to my sister a lot cause my symptoms just kept getting worse. I was struggling to walk, constantly nauseous, and had severe chest pain. One day that month, I took my dog out to the backyard to potty and blacked out. At that point, I was scared and confused about what was going on. Fast forward a couple days and I woke up in the middle of the night struggling to breathe. I finally conceded and went to the ER. As the doctors explained at the time, blood work showed I had a troponin level of over a hundred thousand, indicative of a major cardiac event. A transthoracic echocardiogram and MRI revealed myopericarditis. I was hospitalized for ten days as they searched endlessly for an infection that could be responsible. After numerous tests—CT scans, blood work, urinalysis, and EKGs, they finally decided to test for an autoimmune issue after I mentioned my precursory joint pain. I tested positive for all the markers of systemic lupus erythematosus (with kidney function indicating possible lupus nephritis as well).

Treatment included a combination of steroids, immunosuppressants, and heart medications that I’ve been on for the last eight months. When I was discharged, I was hardly able to function. I could barely make a fist and struggled to raise my arms above my head on account of muscle weakness. I had to stay with my sisters cause I couldn’t function on my own. It was only after I started taking hydroxychloroquine that I had some relief from the more debilitating symptoms.

Since then, I’ve dealt with a myriad of issues stemming from lupus. In February, my cat bit me and I was so immunocompromised that in less than 12 hours half my face was swollen and I needed surgery to remove the infection. I subsequently caught pneumonia in the hospital which put me out of commission for two weeks while they pumped me with every antibiotic you could name. Then, just a couple weeks later, I went to my doctor with a high fever and low blood pressure just to be admitted to the hospital again for another four days. I’ve had to stop working, put my career in music on hold, and completely change the way I live to manage this disease.

Living with lupus is undoubtedly hard—it’s been a physical, mental, and financial burden — but life can still be fulfilling. Since being diagnosed, I’ve introduced two new pets to my household. Whiskey, a terror of a cat, and Kovac, a sweet golden retriever puppy. In spite of my illness (and maybe even because of it) I’ve built great new relationships with people whom I adore and found a supportive community that shares my struggles.

Yeah, life’s hard, but it’s still worth living.