Join the Conversation on
57 people
0 stories
6 posts
Explore Our Newsletters
What's New in
See full photo

Choose wisely, and make it worth it!

Living with Lupus means picking your battles wisely.
Doing dishes for 10 minute, means I have to sit and rest for half an hour.
Taking a half hour walk with my husband and son, means I usually have to take an hour nap.

Going to a KISS concert, ment my ass was stuck in bed for the following 3 days.
But let me tell you, I dont regret it. I am beyond grateful I was able to go. Sure the next 3 days were hell.
Was it worth it?

For me, it wasnt an option. KISS is on their finale tour. I was not going to miss it.
So yeah. I was laid up in bed for 3 days, but I have a precious memory I’ll cherish forever. #SystemicLupusErythematosus #AutoimmuneDisease #lifewithlupus #empowered

See full photo

Brace for impact! #SystemicLupusErythematosus #Lupus #lifewithlupus

Lupus took everything I knew about my body and dumped it down the garbage disposal.
Being diagnosed with Lupus not only means I’m sick, it means I have to re-learn all my limitations. I have to learn what foods I can no longer eat. What physical changes I must make. I have to learn how the weather changes effect my symptoms. Adjust how I dress so I’m protected from the sun, yet comfortable.

Now, getting ready means applying my makeup a little at a time over a few hours because if I do it all at once, it drains me and I have to lie down to rest.
Taking a shower only happens once my son is in bed and I’m preparing for bed because it wears me out EVEN THOUGH I HAVE A SEAT IN MY SHOWER.

So many things that were normal for me have become things I just can’t do daily or for extended periods.

Adjust. Don’t give up.
Lupus may slow me down, but it will never stop me!!!
#LupusWarrior #keepfighting #AutoimmuneDisease

See full photo

Hey you. Yes YOU.

You are beautiful. You are strong. You are funny. You are smart. You are valuable. You are amazing.

I know today was hard for you. It was hard for me too.
But I also know you are stronger than you think.

Keep moving forward. Keep going. Keep believing. Keep your chin up.

You have so much worth.

I hope you never forget how loved you are.
I hope you always feel beautiful.
I hope you never let the world bring you down.

#AutoimmuneDisease #MentalHealth #lifewithlupus #ChronicIllness #Depression

See full photo

My body is a temple....

Lupus makes me feel like I’m constantly falling apart. I can’t keep up like I used to. I can’t go on long runs in the woods to relieve stress. I can’t stay up all night playing video games or finishing a cosplay. I struggle to chase my toddler around the house. I can barely make it through a full day at work.

So uhhhh yeah, sure. My body is a temple. An old decaying temple. Falling apart. Pretty sure its got a curse or two. Maybe three.

#AutoimmuneDisease #Lupus #lifewithlupus #LupusWarrior

See full photo

Slowing down, but never quitting!

Lupus changed my life. My diagnosis flipped my entire world upside down.
Hearing my diagnosis back in May (2019) was heartbreaking, yet gave me clarity.
The cosplayer in me finally understood why I was struggling so hard to survive conventions.

I have had to slow waaaay down on my cosplaying and modeling, but I’m not quitting. Nope.

Lupus may take certain things from me, but cosplay is not one of them.

Currently, I’m not making any new cosplays or props. Its just too much for my body to handle while my immune system shuts down (such a joy that is 🙄).
So I am only working with cosplays I have already completed.
I’m also only attending local conventions. My first con since being diagnosed will be in November.
I’m anxious and worried about it, but also excited, as it has become one of my favorite cons to attend.

Slow me down? Yeaaaah. Its just the fact of how Lupus rolls.
But bring me to a full stop?

I’ll see you all at Neko Con 2019!
✌🏻😜 #lifewithlupus #cosplayer #cosplaylife #autoimmune #SLE #SystemicLupusErythematosus #Lupus #LupusWarrior


The mundane things...

When you have Lupus, the mundane normalities of every day life become mountainous tasks.
Walk across a room? Stop and catch your breath.
Get dressed? Sit and rest.
Take a shower? Better take a nap to recharge.
Do dishes? Hell no, just leave em till morning.
Legs are weak and heavy? Guess you’ll have to expend even more evergy you don’t have to complete those simple tasks. #lifewithlupus #Lupus #LupusWarrior #autoimmune