Luck Fupus

A lupus blog…

Don’t ever let life pass you by…

Since my double mastectomy, I have had the hardest time putting words to the page (keyboard). I never thought there was a corrollation between boobs and brain, and I can only wonder if there’s a slow leak in one of my implants and silicon is making it’s way into my brain. It would explain a lot. I can’t find it in me to concentrate long enough to write some semblance of an articulate post, but with pumpkin coffee coursing through my veins, I’m going to make it happen.

Two years ago today, I hobbled with my pimp cane into a new rheumatologist’s office, Dr. Soloway. If you’ve been reading for awhile, you know him as McDicky. Yep, the infamous McDicky is actually Dr. Soloway. And for the record, he loves that I call him McDicky.

After suffering for over 5 years with this lupus diagnosis, I had high hopes for him. I avidly watched his YouTube videos while I sat in the waiting room for almost 4 hours to see him. If you want to read about the life-changing first encounter with him, you can do so here.

While the entire appointment was mind blowing (not in a good way), I vividly remember after he tore apart my two previous rheumatologists, he looked me dead in the eye and said “Give me two years, I’ll fix you.”

OK pompous asshole, you’re on.

I remember feeling like two years was FOR-EV-ER, and that there was no way in hell I would make it.

Guess what? Two years passed in the blink of an eye. And I made it.

Left: 11/2013 Chemo curls, steroid puff, and pimp cane in tow. Right: 10/2015 Looking almost like myself

So two years later, am I fixed? Not quite. I’m broken, and I’ll always be broken. But, McDicky was able to stop any further organ damage for the time being. And I’ll take it. I’m currently on a regimen of a high dose daily immunosuppressant, a weekly oral chemo, a monthly IV chemo, steroids, and a mountain of other daily medications (15 pills a day and 23 on Sundays). Sometimes the side effects are worse than the lupus itself, and I have to take extra meds to lessen the terrible effects. My meds tear up my stomach. I’ve had accidents in supermarkets (why do they put the bathrooms in the farthest corner of stores?), I get frequent infections, my eyes are worsening due to retinal damage from Plaquenil. I gained 60 pounds in less than 2 months, and almost 2 years later I still haven’t lost all the weight. I lost my hair, I have cognitive deficits, nodules on my lungs, and a leaky aortic valve. I have osteoporosis and Avascular Necrosis in both hips. I go to Physical Therapy twice a week. I’ve had 4 surgeries in less than 2 years. I can’t have kids. I have no breasts (not a direct effect of lupus, but having SLE was a huge factor in my decision). It’s not safe for me to be the type of nurse I worked so hard to be. I’m depressed; am I depressed because I have lupus, or is the lupus causing my depression?  A bit of both, honestly. My self-esteem has taken a huge hit. If I go away for a weekend with my husband and friends, it takes days to recover. I’m always in some degree of pain, sometimes to the point that I can’t get out of bed. The fatigue never goes away no matter how much I sleep. I say no to far more social gatherings than I care to, and I see my doctors more often than I see most my friends.

Better? Not quite. I’m sick, and I’ll always be sick.

This certainly isn’t the life I would have chosen for myself, but that said, it’s my life. It’s all I get, so you damn well better believe I make the most of it. I laugh my ass off taking pictures in front of the hospital where I was born, happily smile as I hold up the highest rated beer in the world, and spend as much quality time with my friends and family as I can. I push myself, probably far too much, too often, and I don’t doubt there are people who see those pictures and think “Wow, Marla must be better/fixed/cured if she’s having so much fun…” And to those people, I say SUCK IT. I make no apologies for living my life to the fullest. Lupus is not my life.

But it sure makes for good reading material.

Love you all <3

Comments

  1. Tia G. says:

    I am so honored that I was able to meet you. I have no idea how difficult it must be to be out in social situations and hide the pain. I have no clue what it’s like to be in your shoes. But I am just so humbled that in one of those social situations, it was with me. And I’ll never forget it. Ever.
    Thank you for continuing to blog. Even if it’s sporadically.
    You make such a huge impact.

  2. Holli says:

    I miss you blogging but I get it and understand. I’ll take what I can from seeing posts on social media. Love ya to pieces and you remain in my prayers.

  3. Jim C. says:

    Welcome back, Marla. Know that I will always be in your corner, rooting for your happiness and successes.

  4. Tracie says:

    Marla,
    Your Simply Amazing, I’m soo Thankful for Melissa Bocage bc without her My Mom and I would not know such a Fabulous Human Being. I hate that you have to endure everything you do, it takes a Strong Person to not give in or give up.. And maybe there have been times where you did say that you were DONE. But I am Glad you didn’t!! You’re a very inspirational friend. I’m sure you’ve been told this before but You should write a Book… This Blog is Wonderful, I love you and I know we are all here for a Reason…. You Are Such A Blessing!!! Keep Fighting Lady…xoxoxo

  5. Nicole says:

    I love reading your posts and definitely needed it today! I have lupus and I’m struggling to continue my nursing career.. I’ve been in bed all day after my infusion yesterday and have been feeling sorry for myself. No one understands and I’m exhausted. Hope everyone is having a low pain day!

  6. Syn says:

    Thank you for laying bare the loss, the grief, and the acceptance. Chronic illness is HARD, I have to live each day like it’s the last best day I’m ever going to have. We can either be bitter in the face of that, or treasure every moment, knowing what that means.

  7. Christine says:

    Dr. Stephen Soloway in NJ? I live in Hawaii and unable to find a doctor to help me. Yes, I’d be willing to fly to NJ to get help.

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