My Lupus Journey

01/13/2026

This woman is on her 3rd go round with Shingles! Pretty sure its cause I can't afford my millions of meds and need refills on at least 5. All my lupus meds are out. I've only been getting my Sapenelo infusions monthly. I am so tired of fighting everyday something new. It's exhausting. And when you have basically given up on pain meds you really find how fu***ng tough you are. Ive been pushing through the pain as if its just a large nuisance. It hurts, like 9 out of 10 if I move too fast or rub up against it. I've taken zero pain meds. This point they're pointless. Give me maybe 1 hr of relief if that. They never touch the pain, what's the point. To all of you that made it this far, thank you.

12/09/2025

Meme vs Reality

12/02/2025

I lost 7lbs in 7 days due to this cold. I had my infusion last Monday, sick 5 days later and can't hold anything down. Now on day 7 and I still can't keep anything down.

11/30/2025

Showers are so hard for me. Get in, hot water hits back & I'm paralised by the releif. Fibromyalgia don't tell my back to turn it down due to the amount of constant pain in the broad of my back. Then my blood pressure goes up and the rest of the shower is on much cooler heat and I am wiped from just standing there. Getting in and out is hard too, knees and hips pain. My arms, back, and face get bright red like im sunburned, but not. They get like this around heat and sun. Wish there was an easier way.

10/04/2025

The heat from butterfly rash is no joke.

09/27/2025

Good morning. Just woke up now enjoying a little peace before I go into the house of chaos with 4 kids. ☕️😊🏡

09/27/2025

09/27/2025

08/25/2025

Multitasking the day away. 1st: infusions were a go, 2nd: child's IEP meeting took place to get them back in school, 3rd: my next Dr. appt to clear me to start going back to work tomorrow after this little gallbladder hiccup.

08/22/2025

Not So Daily Activities of Living