What is Lupus? Insight from Living with Lupus Nephritis (Plus My 7 Early Lupus Symptoms)

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When I started this blog, I planned to talk more about my health and discuss how I am living with Lupus while enjoying life. I later realized I’d been referring to my autoimmune disease quite casually, not realizing that some of you are probably thinking, “What is Lupus, actually?” So let’s break it down!

Standing at the top of a tall dune over a clear lake

This post is my effort to give you a quick and simple understanding of my Lupus and how it affects me.

Note: Lupus is a complex disease and varies so much from one individual to another, so it is important to keep an open mind when listening to a Lupus sufferer talk about their pain. I am also not a doctor so my commentary and insight is based on my own experiences and should not be used as medical advice. Please always consult with a doctor. I have a rheumatologist and a nephrologist for my Lupus Nephritis.

What is Lupus?

Lupus is a chronic autoimmune disease
Lupus makes the immune system use our own antibodies against us, sort of as if we are a walking flu in need of a cure (this my own definition)
Over 1.5M Americans are affected by Lupus
Lupus symptoms mimic other diseases (remember how every “House” episode diagnosis started off with Lupus?)
Most Lupus sufferers are women (teen ages through menopause); Black and Latina women are 3x more likely to be diagnosed with Lupus
A flare-up (flare) is when your Lupus becomes active (possibly life-threatening); remission is when it remains dormant

Early symptoms I had with lupus:

(Share this list with your doctor if any of these lupus symptoms sound like you!)

Protein in my urine (this was the primary symptom that set the doctors off)
Blood in the urine (this isn’t something I could see myself. But it was found in urinealysis)
Heavy fatigue (it is different than feeling tired. It is like an extreme heaviness.)
Positive kidney biopsy (my first biopsy was negative; one year later they tried again)
Butterfly rash (mine is only slightly flush; not like the intense ones I’ve googled)
Joint pain (this only appeared once I started taking high-dose prednisone to treat my mysterious kidney disease, but is now a primary symptom.)
Hair loss (this happened when I was a kid and we called them “boils” because we didn’t know what it was. They were sore spots on my scalp that would burst and bleed a little or have pus. I was too young to know what medicine they gave me but it took a year to go away and left me with bald spots that regrew, and some scalp scarring. Now that I am diagnosed with lupus and more aware of the different types, I think that was my earliest symptom five years earlier).

looking out the hotel lodge window in the evening

How Lupus affects my daily life:

I often having aching joints, especially in my hands, wrists, knees, and feet/ankles
I get sores in the roof of my mouth when under stress (flare up), though it hasn’t happened often recently
I have sensitivity to the sun (when on medicine especially since it interferes)
I get extremely tired (need 9-10 hours of sleep per day so I often go to bed early or sleep late)
I have to take medicine daily (I went without medicine for a few years during a remission but am back on medicine)
During flares I have protein and (microscopic) blood in my urine which affects my labs and treatment plan (kidney health)
I have to see the doctor every 6-12 weeks depending on my health

plate of seaweed salad, grapes, english muffin toast, boiled eggs

How I cope with Lupus:

set an alarm to remember to take my medicine daily if I am on a robust schedule
surround myself with people who are mindful of wellness (they don’t have to play doctor, but they should respect my decision to sleep more, etc.)
lather on the sunscreen
exercise to keep my joints from hurting and my bones strong (prednisone effects)
stay away from cold places (hurts my joints if it is too much)
remove all things stress-related from my life (stress is a major trigger for me)
do salt water rinses during mouth sore flare-ups
take wellness vacations to unplug and destress

These days I am traveling often and it is easy to forget to take care of myself. Thankfully, my boyfriend (now husband) is traveling with me now and often helps with reminders about my medicine, water intake, sunscreen, and rest.

When I was traveling solo, I didn’t have that, and had to stay really organized and on top of my Lupus care regimen. But I made it and became the healthiest I’d ever been for a long while.

I believe I can stay that way as long as I stick to the essentials. Stress and inadequate rest, in my opinion, are the two big triggers for me. I aim to be mindful of how I treat my body so I don’t experience another flare like I did in 2013.

Pandemic Update: the stress of a bad car accident and COVID-19 took a toll on my lupus and took me a few steps back, so back to my wellness routine to get back on track!
Post-pandemic Update: it took about two years to pull out of my lupus relapse due to the car accident and pandemic stress
2025 update: Sadly, due to the stress of caretaking for my mother who has now passed away, I was hospitalized with a lupus flare and uncontrollable blood pressure for a few days. During that time I learned of a new Lupus symptom: hypertension due to kidney inflammation. So we added a blood pressure plan, returned to the Lupus medications we knew worked, and got back on track.

Lupus is never going to be a thing that fully goes away for me, and I accept that. But my life with lupus has shown me time and time again that when I am able to manage my stress and mental health, as well as my physical fitness, I can feel at optimal health.

Here are some resources that have helped me along the way:

black woman working out at home with exercise bike

Share it!

If you know someone newly diagnosed, wondering what is lupus, or feel like my Lupus experience matches yours and want to share it with a loved one or doctor, PLEASE DO! There’s not enough talk about this incurable disease and I want to increase awareness in order to make change and find a cure.

xx, O.