Lupus Poopus

My sister had Lupus.  That is the disease/sickness that she was living with from the age of nine to almost 27.  I’m not sure why I didn’t come out and just say that from the start.  It wasn’t really a secret.  It just wasn’t the intended focus of this page.  But, I’m realizing how big a role this damn disease played in my sister’s life – in my whole family’s life.  It affected us all…  We were a seemingly “typical” family…and then, one day, we weren’t.  Lupus hit my sister pretty hard right from the beginning.  It was very unusual for a nine year-old to be diagnosed with it…and for the cherry on the top – she had the worst version…the version that attacks everything.  (Lupus is an auto-immune disease where your immune system starts attacking your own organs/tissue.  Some types only attack specific parts – my sister had the type that wages a full out war on everything.  Brain, kidneys, blood, joints, skin…).

I’m not sure if treatment has changed, but my sister had to start taking steroids and get chemotherapy.  My mom says that had she known what she does now (ain’t hindsight a bitch?) there is no way in hell she would have let them give my sister chemo and maybe not even steroids – or at least not as much.  I’m not sure if they could have been by-passed and honestly, I have no flipping clue why she went on chemo…  I just know what this all did to her.  She started off fourth grade as rambunctious as ever but at the end, she was a puffy, thin-haired, exhausted little girl.  Was it the drugs and their side-effects…was it the Lupus?  You start to lose track of what’s causing what…

And that was just the beginning.

In the years since then, here are some of the highlights: brain swelling and surgery to get a brain shunt, loss of both of her kidneys, numerous surgeries to get dialysis tubes put in, kidney transplant, losing the new kidney, two open heart surgeries, two hip replacements, infections x 1000, breathing difficulties, constant joint pain, side effects from pain meds, addiction to pain meds, and oh yeah – that last thing…death.

This little nine-year old had all that to look forward to…and, yes, she was the one it was happening to…but it takes quite a toll on the entire family.  My brother and I grew up in that world – of hospitals, of not only missing our sister but missing our mom, too.  The hospital in our hometown was sub-par, so when she would get sick, they were both gone.  And, let’s just be honest here, when you have a sick kid in the family – that kid gets a lot of the attention.  AND, OF COURSE THEY SHOULD, BUT there’s no way around that this affects the other kids.  I was eleven.  I did not have the mental capacity to really be understanding.  And once I hit puberty and got all of my teenage angst, I became downright resentful.  And, then, my sister got resentful!  She was on her way to be a rock star…no question this girl was gonna be Miss Popular…and then, got smacked down with this disease and had to watch me get to do all of the things that she so desperately wanted.  We were already very different, but the crack became a gulf between us as we became teenagers.  And, it just took me a really long time, to try to bridge this gap.  I finally figured out how to be an older sister at the age of 29 – to see past my own issues, my own hang-ups…to see past her facade of hate and jealousy…to where I finally understood it.  I got it.  It’s so obvious…and yet, it took me a while to get there.  To figure out what she needed.  To figure out how to deliver it.  It just took time.  The one thing she didn’t have.

Oh, guilt, there you are, again…that was a nice ten-minute reprieve…before I circled around back to you.

There are a lot of times when I hate myself and you might hate me, too.  …from the outside, it seems so obvious – how to feel and act when you have a sick family member…but when you’re in it – it’s not like that.  It’s complicated – you’re dealing with people.  Flawed human beings and now you’ve added in this extra unpredictable variable.  And, so maybe exploring some of this – the effect that Lupus had on my family’s life – helps me (and you) understand the turmoil that is swirling around inside my head, as I deal with the loss of my sister.

And, maybe, there is someone that this will help.  Someone who still has time.

2 thoughts on “Lupus Poopus

  1. Hi, I just read your blog and I am sorry about your dear sister. Grief is very difficult and I just hope that when you BLOG it does help to sort out your feelings. I have a sixteen year daughter who has mixed connective tissue, they call it a cousin of Lupus and she was diagnosed at the age of 13 so our lives our doctor’s visits, hospital stays, medicine tons of medicine and her missing out on her life. She has no life this disease has taken over. I worry all the time. I am sorry I am just venting but it is very difficult on the family. She is my only child and I am a single parent raising her so I am the one who knows how much this disease has done to both of us. Thank you for reading and I will continue to read your blog.

    • It really does bring me to tears to think of other kids and families going through this. I just want to reach through the computer and give you a hug. I hope upon hope that your daughter is able to get to a point where her disease is manageable. Having to deal with this when you’re going through all your teenager stuff… Ugh. It’s just plain shitty. My sister missed out on so much, too.

      I will keep you guys in my thoughts and send positive wishes your way. And, feel free to vent anytime. I won’t pretend to have any answers, but I can listen. xoxo

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