That is all.

I have a few canes and this one seemed a bit boring 😂 so I made it sparkly

Anyone else sit on the bath mat to catch their breath?

The title says it all, I guess I vacuumed the couch too hard yesterday and now I have to pay the price. Started feeling it in my shoulders while trying to lay down, woke up this morning and it feels like my neck and head is trying to pop off. Guess the only thing my body likes is sleeping on the couch instead😂 Seriously though wtf. I injured myself vacuuming? Again, what even is this disease? Send help😂

That’s all 😌😂

So I’ve been sleeping for like 3 days only waking up for an hour or less at a time. I then say to my boyfriend, “Babe… I think something is wrong…” he looks at me and asks, “with who?”. I roll my eyes and say, “with me, duh”. He then turns his attention back to his phone, “duh, you have Lupus. So are we getting ready to go to the Hospital again?” I’ve been staring at his back for the past 15 minutes…

Edit: while I’m grateful for the support lol, my boyfriend isn’t toxic. He quite literally would starve himself just to ensure I have enough to eat. He’s been there with me urging me to fight until we both ended up using lupus as the butt of our jokes. He’s brought me to the hospital nearly every week especially during all of last year, hoping to find a solution to have me stop flaring so badly. It breaks him to see me in pain basically a shadow of who I was literally a year ago while he’s unable to help. He’s jaded by the fact that after all these hospital admissions not one thing has been improved on by the doctors. We’ve both resigned to laughing at the situation when I say I don’t feel so hot because it’s always a new symptom and lupus loves playing with me. He has a full time labor intensive job and still comes home and cooks, cleans, literally everything sometimes going as far as bathing me… we just have matching dark senses of humor.

I love refilling my medication organizer /s

I loathe doing this. Thank god it’s only once a month. I take a total of 28 meds per day so it’s tedious as hell.

BuT YoU dOn’T hAvE a ReD fAcE rIgHt NoW.

sorry let me just pull it out my ass.

guys, if ur face isn’t red at this moment, you DO NOT have lupus. I REPEAT, IF YOU ARE NOT CURRENTLY BUTTERFLYING YOU DO NOT HAVE LUPUS. THE DUMBASSES HAVE CURED US.

This is hilarious 😂. Should I wear this?

They say it’s hard to find the ability to laugh and find humor in the dooms of life. I say, there’s humor in everything.

For some context, my mom has stage 4 cancer. Prior to her being sick she was a kick boxer, lifted weights, and was on beast mode 24/7. My mom is tough, both physically and mentally. Right now she is the weakest she has ever been and she isn’t even currently doing chemo, which is saying a lot. (My mom used to go to the gym with her chemo bag pumping through her, like insane).

Anyways. She really wanted apple juice the other night. The big yellow bottle Mott’s kind. I’ve been working like a dog and my body is feeling it. Normally when I’m starting to hit a flare, my arms and hands are the first thing to lose strength. I struggle to get the push down pill bottles open. This important.

I hear her in the kitchen causing a ruckus. She’s been extremely frustrated because she’s been so weak. I hear the apple juice bottle get thrown. I get up and ask what’s going on and she just looks at me and I know it’s because she couldn’t get it open. She says, “Can you please open this for me”.

So now it’s my turn to take on the big yellow bottled beast. I walk over. I pick it up off the floor and prepare to snap this bad larry open. The shit wasn’t budging. That cap was sealed with ancient metal fused together by Gorilla Glue straight from the Gorilla’s ass.

So here’s the two of us. The two weakest bitches sitting on the kitchen floor at 11pm at night reading this apple juice bottle to filth. Every profanity that could’ve been screamed at this piece of shit bottle, was said. So now here we are, tag teaming this thing. Giving it a double whammy of both physical and emotional abuse. Us, being the two most stubborn people in existence, weren’t giving up. My hands were locked up, she could barely lift her arms. It was a catastrophe.

I know what you’re thinking. Melt the cap off. Cut the cap off. Stab the bottle? Drink something else. Sure. There’s many ways to go about this. When the brain is fried and the simple stuff seems more complicated than the hard stuff, you take the alternate route. Mom wanted apple juice. She was getting apple juice.

So, I grabbed a drill (that I didn’t even know we owned?). I drilled a hole right through that fucking revolutionary war steel ass cap and stuck a straw right through the middle of it. My mom got her apple juice and the war in the kitchen with the big yellow Mott’s apple juice bottle was over.

In the midst of all of this, my mom was losing it over being weak. Until she saw me also being weak. The fact that two grown women sat on the kitchen floor from 11pm to midnight starting WW3 with apple juice, is where the laughs came. The weakness and pain cause frustrations, both with cancer and with lupus. But when you can find the humor of the ridiculousness of the things that occur amongst it all, it makes the dooms and frustrations of life, a little less doomy and frustrating.

When life gives you Mott’s apple juice with Satans Gorilla Glue ass capped on it, battle it and find the humor in the battle.

Hope everyone gets to spend time with their loved ones and celebrate love! This is my first valentines day with my boo, Lupus.

Cheers baby! (oviously can't drink anything, so fresh juice it is)

Take care everyone x

With the holidays upon us, my work got far busier than I expected last week, and even after resting through the weekend, I ended up canceling two client meetings yesterday and crawling into bed at 5pm. I felt like death. I got up once to use the bathroom, and when I came back I was covered in cold sweat. "Why am I covered in cold sweat after literally walking 10 feet???" I lamented.

My husband thoughtfully explained to me that the reason I break out in cold sweats when I have no spoons left is because my soul is reaching into the time vortex to borrow spoons from my future self and the cold sweat is just vortex goo.

"Think of it as time residue," he added, helpfully.

Diagnosed SLE/Sjogren's April 2024 200mg hydroxychloroquine daily Also prescribed prednisone, meloxicam, and gabapentin as needed (awaiting Benlysta approval).

What kind of remedies do y'all use for stiff hands, elbows, knees, ankles, etc.

Newly ish diagnosed (one year) 34f on hydroxychloroquine 300 mg daily. My hands and feet are always so cold. I’ve been having chills, night sweats, and my kidneys feel like they’ve been punched. This is my first “flare”. This condition is so weird .

I started iron infusions mid December and each session was $32. I went into today for my third one and now one session is $322, so I’m looking into alternatives. I’ve started digging a hole in the backyard, but the taste has been horrible. What are some of y’all’s favorite soil brands?

I’m half joking :,)