When your sister has Lupus #epicfail

My sussie, Rentia

My sussie, Rentia

It is kinda like when your ice cream cone falls on the floor, or your balloon pops on grass.

You imagine the little child looking up, and seeing you can’t fix it, they do that cry. The one where you wanna buy them all the soft serve in the world, all the loons you can blow up.

…..but you can’t.

My sister has not had great luck with health. Okay, some ailments were self inflicted, but she started off on a bit of a negative when she was born with defective heart valves.

She had open heart surgery at 18 months, 16 years and again last year at 36 years. Besides this, she (and I…) are quite mental. Like for real, not like a boss. Schedule 5 kinda lunacy.

Our family is one that suffers with bone inflictions. You know, the odd creek when you go up and down the stairs. Ankylosing spondylitis. Nothing too hectic. My Mammie has enjoyed being ill so much her liver has stopped functioning. True story. Side effect when you in pain and you don’t know what’s wrong with you and all those with the degrees don’t seem to know either. Until one day they do. A bit late if you ask me.

In the end, I am not sure which illness I have going when, if I judge by my research and where and how I feel pain. Fibromyalgia seems the most accurate, but my scans shows signs of the bone giving it a spondylitis too. Who cares? I do feel pain. 100% better than a year ago.

Then here comes my sister from the left field. Lupus. This girl is on fire!

Almost a year to the date of her last open heart surgery, Rentia was back in hospital. Heart failure. Only they examine her and finds that she has sores all over her body. Her heart responds very well but she is in tremendous pain. Let’s order some scans, blood tests etc. See us in a month, heart is cool, go home. Sorry about the pain. Kinda like thanks for the fish.

Only the check up a month later turned into us all going “Lupus”? What the hell is that. They give meds, she goes home – I give it a google. I have too many questions, too few answers – none matter.

Two weeks later my sister is admitted to hospital. She says she feels like she is burning, her hair is on fire. I noticed a couple days before that her bbm’s are illegible. Usually her spelling sucks, but this was different – I could not understand what she was telling me. Episode of “Touch” for us!

Her memory and thought process is cloudy, she is in pain. She slurs when she speaks. She can’t remember. We are scared. She remains calm, fierce and fearless. Braveheart.

Eventually small counties in Africa had to go without food as the amount of tests, scans etc is very expensive. The medical aid gave her three days of testing. Doctors conclude all symptoms are Lupus related. Too little fluid on her brain. Cholesterol and sugar double digits. Extreme pain. Sores all over her body that itches. She is still on fire. She speaks funny. Not in a comedy kinda way. More Stephen King.

“IT”. Lupus attacks skin and seeing as your body is made of the cells that form skin it pretty much eats away at everything. There is no nice way to approach it and candy coat it at all. – @Jinx_dj

Sometimes ice cream falls in the sand, balloons pop and your baby sister gets Lupus.

This is life.

I wish you enough,

poѕтed ғroм тнe ѕecond cloυd on yoυr leғт


10 thoughts on “When your sister has Lupus #epicfail

  1. gaby darling says:

    Very sad to read this. I have a friend who has suffered with lupus her whole life & after seeing many doctors over the years has finally found a solution that makes her quality of life much better than it was in the past. She mentions a change in diet & lifestyle that was difficult in the beginning but by sticking to it, its given her the ability to live her life normally. I will get info & details for you. Hopefully it will help. Much love & light to you & your sister. xxxx


  2. Panni says:

    There is a product that I would love to tell you a little more about that may be able to help your family. Please contact me on my email if you are interested.


  3. Such a very sad state of affairs. It doesn’t rain, it pours sometimes with a bit of thunder and flooding added. I hope Rentia gets the proper treatment and feels a bit better soon. Very well written my friend.


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