My Lupus Journey

My Lupus Journey Mom with 4 kids still at home navigating the world one minute at a time while stuggling with Lupus.

I'm having a rare good day. So ice skating with my babies it is. I WILL pay for this later. I was using a cane all last ...
07/31/2026

I'm having a rare good day. So ice skating with my babies it is. I WILL pay for this later. I was using a cane all last week. Enjoy the good days when you can.

07/27/2026

One thing about lupus is it steals your time! I'm now in physical therapy for mobility issues in my upper legs. And my GI system has been giving me problems for years, but now it HURTS TO HURT. Ive lost 15 lbs in 3 weeks without my mobility, no exercise. I feel like im withering away. Its hard to eat because it comes out both ends within an hr. I just ask for prays.

This woman is on her 3rd go round with Shingles! Pretty sure its cause I can't afford my millions of meds and need refil...
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.

Meme vs Reality
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.

Showers are so hard for me. Get in, hot water hits back & I'm paralised by the releif. Fibromyalgia don't tell my back t...
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.

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Tulsa, OK

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