Luck Fupus

A lupus blog…

Can I handle the seasons of my life?

Hello my loves,

It’s been 6 weeks back at work, and I’m… exhausted. In the wise words of The Fresh Prince of Bel-Air, my life got flipped turned upside-down. I feel like I’ve been in a daze, yet at the same time it feels the past 5 years didn’t actually happen. On my first day back at CHOP I walked in the main entrance, took in the hustle and bustle and it was like I never left. It’s like when you graduate college, thinking that you’ve made your mark, created memories, and your legend will live on forever. Yet, when you return years later, you realize you are just as much a memory for it as it was for you- real life isn’t like Van Wilder. It’s business as usual in your absence. It was surreal.

I sat in orientation and reflected on all I’ve been through since I stopped working in 2012, questioning if I’m ready physically and mentally to return to the work force.  I had my picture taken for my ID , and a few hours later I was given my shiny new badge. No going back now.

A few years ago, I went to a new doctor hoping he could give me some answers. He looked at my chart and said “Woah, tetralogy of Fallot AND lupus? That sucks.” (no fuck, Captain Obvious. Did you read about the cancer, too?) “How do you manage?”

I told him that was the reason I came to him, you know, to help me manage. In the end, he didnt do so hot in the helping me manage part, but he was cute. So there’s that.

I digress. I was running through the last 5 years. 5 surgeries. I got my port after my nurses finally refused to administer chemo peripherally. I had the inside of my uterus fried heated up to a balmy 200 degrees and my tubes were tied. Surgery on my butthole. Double mastectomy. Reconstruction. I lost my hair, my ability to have children, my breasts, at times my sanity, and once or twice, my dignity due to lovely GI side effects (read: shitting myself in Wegman’s and Old Navy).

Now as I start this new chapter, I have to not only manage my health in this shit-show we call a healthcare system, but I have to learn how to provide care to others while still putting my own health first. And now I’m forging ahead in this journey without a partner. He didn’t play a huge role in all of this to begin with (not a dig at all, it’s just the truth), plus being married to a sick person, especially when the sick person is me, is not an easy thing. But going at it alone… just… sucks.

It’s so many changes at once, which I guess is cliche, yet apropos, considering summer is coming to an end. As I muddle through all of this, I’ll try to keep up with my blog as much as I can. I feel like I’ve had writer’s block since my double mastectomy and just haven’t had the motivation to write (was my brain in one of my boobs?????). That surgery is when a lot of things in my life began to shift. But looking back, I still would have that surgery if I had to choose again. If relationships had been truly stable, they would have survived.

Bear with me, please.

Love you all <3

Comments

  1. All my love and support always.

    Sometimes the writing goes away, but it always comes back. In a burst or like a river. Don’t push. This post is the perfect example of that – good writing, real, but frank and not contrived.

  2. Stacey says:

    Love your writing. You have a true gift and making me smile and laugh thru tears as I read your story.

  3. Kelli says:

    Your brain was not in your boobs, writing can be hard when life is hard. You’ll do great at your new job because you’re a complete rockstar!

  4. Paula Nixon says:

    Marla,
    I’m so sorry you are going through all of this (especially alone) but I hope you know what an inspiration you are to all of us. Your gift of sarcasm is something I can truly relate to. Keep on keeping on and I’m so glad you are back at CHOP…they are blessed to have you!
    💜 Paula

  5. Holli says:

    For some strange reason, your blog posts aren’t updating on my sidebar on blog. I used to never miss a post but I have missed a few because of that.
    Did I miss a post that you mentioned a divorce? If so, I am sooo sorry!!
    You’re going to get thru these seasons lady and in style. You always do. I love ya girlie and hear for you no matter what. I sent you a random text a few weeks ago because you were on my mind.
    Please don’t overdo it!

  6. Rachael L Birge says:

    I love you Marla!!!

  7. Gwen says:

    Oh lovey, if anyone can emerge victorious from a struggle, it’s you. I’m sorry to hear of this latest setback, and I’m sending you tons of love and good juju. Love you, miss you, and I’m here for you. xoxo – always your Gwen Coco

  8. Penny says:

    It’s terribly unfair that when we feel we’ve had the shit kicked out of us that those hard times can bring the cracks and craters in our relationships to light. I’m pretty sure that no matter what I say you will probably still feel alone a lot. But I’m not going to let it prevent me from telling you that I’m here for you, that even though we don’t know each other well, I’d be happy to fight off any doubts you might be facing.
    You inspire me to find my inner strength. You inspire me to write even when I’d really like to pull the covers over my head and wallow in my own self-pity. You inspired me to find the humor in my own shitty situation.
    You know that you’ll get through this. Take your time. We’ll be here. 😐

  9. Maya says:

    Ok so first, you are amazing! You are such an inspiration to others dealing with even one of the things you’re dealing with, let alone all of them, and to people with chronic illness in general.

    Second, come visit us in Philly!!! You and my bf can talk CHOP-y medical stuff while I try to follow along! And going at it all alone can be tricky, but it’s also an opportunity to really focus solely on you and the changes in your life and what you need without worrying how it’s affecting your partner, which sounds kind of harsh, but sometimes you need that during illness.

    Third, most men have their brains in their … well, not in their heads… so why totally OK for a woman have brains in her boobs, right? Just sayin’. 🙂

  10. Alyssa says:

    Lots of love, Marla. Been missing your writing!

  11. Vanessa says:

    Hi Marla, wish you a full remission soon. I am a Lupus sufferer too and I am dealing with a terrible hair loss that of course makes me terrible sad and I cry often coz of that . I still keep my remaining hair because I don’t know how to put a wig correctly so I put hair extensions to my stronger hair to cover the rest. About marriage you have hope to love again. By experience. .I looked for another Lupus patient 😊 so we support each other. So in my opinion next time you can date a Lupus patient or a cancer survivor or a man with alopecia…etc.

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