Recently I read a post from a Lupus acquaintance of mine. She stated that her living room makes her sad. She was describing all her pillows, blankets, electric blanket, and pharmaceuticals.

She said, (and I quote) “It looks like a dying person lives here… this is really hitting me hard today.” – Jen S

I have to be honest, after reading her post, I looked up and glanced around my family-room. Thankfully, mine doesn’t look that way right now. In fact, it’s actually orderly! It sort of looks pretty thx to Hubs highlighting it with a gift of beautiful red roses.( It smells pretty darn good in here too!) Lol.

But that’s “today”, as in “right now”. The truth is, I understand all too well what she’s talking about.

Have you ever came down with a bad case of the flu? You’re walking aimlessly around in your robe, carrying a Kleenex box? Next to your lazy-boy is your cough drops, cough syrup, throat lozenges, and your Nyquil? (a couple gross dirty tissues might still be lingering? eww). You’re just too sick to give a crap? Well… that’s a small analogy of what I’m talking about. Except with Lupus… it’s not just a few days, it could be a few months or more, depending on how long the flare last. And it’s not cold/flu medicine… it’s a long line of pharmaceuticals… from your long line of Doctors.

The sad part about Lupus is that when you’re in a flare… you’re just TOO sick to care. You feel like your life is coming to an end. You’re in so much pain you can’t pick up your hairbrush, let alone a vacuum. You might go a week before you even venture into the shower. Why? because the water hurts your skin SO much. The only way I can describe it is turning on the shower and the water feels like pellets, and the shower head is the pellet gun.  Actually a nice hot bath sounds better, but you can’t get in and out of the tub. So you wait until you have enough strength & energy… (or for hubs to help you in and out, if you’re not too prideful to ask).

Then thx be to the Lord, you get a shot of steroids… and you wake up feeling 100%! You feel normal (or normal for you). You’re happy, and you’re ready to tackle the world! You want to visit family and friends! Go on a long walk! Call someone! Meet friends for lunch. It’s the best time in the world. You are no longer confined to your bed or lazy-boy. GOD IS GOOD ALL THE TIME! You have high hopes that you’re feeling so good, because God has cured you!

Hours turn to days… days turn to weeks… weeks turn into a month… and you start hurting again. Then you get stiff, then you can hardly walk, and THEN you’re in severe chronic pain. You’re back to a debilitating state. A state in which you’re only surviving… not living.

You’re in bed looking at FB, trying very hard NOT to get jealous over all your friends and family living normal lives… Vibrant, energetic, happy. You try so hard not to mourn your past life.

You’re scrolling through the feed when all of a sudden your nose starts to itch, so you reach your hand up to scratch it, only to remember your nose is filled with ulcers. Tears stream down your cheeks because the pain from touching it is so severe.

Back to FB you see the cutest pictures EVER of your grandkids. You want to be with them. You want to give them hugs, and spoil them rotten!!! This makes you even more depressed, so you decide to just turn it off, roll over and take a nap. As you’re rolling over you start gasping and grunting, because you forgot your hips are in so much pain you can’t sleep on them. So you lay back on your back, careful not to move. You can feel the covers on your skin. They hurt. It feels like bricks laying all over the top of you. You’re soooooooo tired, but you’re hurting so bad you can’t sleep. You need heat… nope, you need ice… nope… nothing works. You have to pee, but you’re hurting too bad to get up… where’s my cane? Where’s my Hubs? Where’s my kids? Where is anyone that can help me?

You pray.

The Lord gives you peace, and somehow you start to doze. You get a good 2-3 hours of sleep in before you wake up with a migraine. You pray you don’t get sick; as in “throwing-up” sick.  “Please God don’t let me get sick, Please God don’t let me get sick, “Please God don’t let me get sick.” It becomes your mantra until you get sick. Yup.

You throw up so much that you take refuge on the bathroom floor. ‘I’m just going to lay here because I’m too weak to go back and fourth to bed’.  And you’re so sick, you don’t even care that you’re lying on the BATHROOM FLOOR. Eww.

Lupus sucks.

So yeah… I understand. I understand what it looks like to glance around your room, and realize that it looks like a dying person is living there. I totally get it. I know what my home looks like when it’s clean, organized, and polished… but I also know what it looks like when it’s sickly, disorderly, and dusty.

The only suggestion I have is to stay BUNDLED. Bundle up with the bible and God’s word. Bundle up in prayer. Bundle up in your favorite PJ’s, with your favorite blanket, and your favorite mug full of hot coffee. You know that around the bend God will be bringing you some days of freedom and happiness again.

And here’s the hard part, when you’re steroids start wearing off, try not to get too depressed. I know it’s near impossible when the eye of the tornado is facing directly in front of you, and you’re completely unaware of how long it will last. So please try to bundle up your blessings, and hold them close to your heart. Thank and glorify God on your wonderful days, and on your worst days, thank him for still being alive.

Someday we will be in heaven. God has a room for us, already reserved. There we will have no pain, no hurt, no disease. Every obstacle we have to face here on Earth… will be well worth it when we’re back home with our Father. Bundle up in love my friends. I’m praying for you.

God bless and Happy Valentines,


1 Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty… I will say of the LORD, “He is my refuge and my fortress, my God, in whom I trust.” 3 Surely he will save you from the fowler’s snare and from the deadly pestilence. 4 He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. 5 You will not fear the terror of night, nor the arrow that flies by day, 6 nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. 7 A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. 8 You will only observe with your eyes and see the punishment of the wicked. 9 If you say, “The LORD is my refuge,” and you make the Most High your dwelling, 10 no harm will overtake you, no disaster will come near your tent. 11 For he will command his angels concerning you to guard you in all your ways; 12 they will lift you up in their hands, so that you will not strike your foot against a stone. 13 You will tread on the lion and the cobra; you will trample the great lion and the serpent. 14 “Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name. 15 He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. 16 With long life I will satisfy him and show him my salvation.”


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