What is Lupus? Insight from Living with Lupus Nephritis

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I planned to talk more about my health on this blog and discuss how I am living with Lupus while enjoying life. Then I realized that some of you don’t even know what Lupus is. Whoops! Sorry about that.

This post is my effort to give you a quick and simple understanding of my Lupus and how it affects me. Note, Lupus itself is not even close to being simple and varies so much from one individual to another that it is important to always keep an open mind when listening to a Lupus sufferer talk about their pain.

Facts about Lupus:

Lupus is a chronic autoimmune disease
Lupus makes the immune system use our own antibodies against us, as if we are a walking flu in need of a cure
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 thru menopause); Black and Latino 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

How Lupus affects my daily life (now):

I often having aching joints
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)
I used to have protein in my urine (kidney malfunction) and if I have a slight flare up it shows in my follow up urinalysis
I have to see the doctor every 6-12 weeks depending on my health

How I cope with Lupus:

I set an alarm to remember to take my medicine daily if I am on a robust schedule
I 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.)
I lather on the sunscreen
I exercise to keep my joints from hurting and my bones strong (prednisone effects)
I stay away from cold places (hurts my joints)
I remove all things stress-related from my life (stress is a major trigger for me)
I do salt water rinses during mouth sore flare-ups

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 gives 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’ve ever been.

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!)