I’ve been closing the bathroom door while I dress so my husband can’t see me naked.

I spent 35 minutes on the floor of the department store, crying, while picking needles out of the weird, hard, zig-zag carpeting…devastated over the reflection I saw in the mirrors surrounding me.

I couldn’t escape her.

After twisting and turning and over-extending my bruised neck like a maniac to avoid her, I picked myself up and tried on extra-large shirts, extra-large pants, and faced her head on…sobbing.

Her…the whore. The Lupus whore that continues to take, take, take.

She who has claimed every inch of what made me feel sexy, what made me swagger, what made me woman. Uterus, ovaries, cervix…that ass shake when I walk in my thigh-high boots. Gone. All gone. Taken by her.

Lupus has left a swollen, puffy, just thankful to be alive shell of a female in its place. And there I was, actually sitting there, on the floor, wishing I could lose another organ instead of go through the humiliation this current body brings me.

Because of her.

The drugs we are using to keep me alive have utterly destroyed me. The side effects make me feel worse than the disorder. I was never this achy. I was never this uncomfortable. I was never this tired. On 60mg of prednisone, a very powerful steroid, I have gained about 50lbs since December. I have a double chin, a swollen and protruding stomach, and for fun…you can now see the bald patches on the back of my head, a souvenir from when I was 119lbs, near death, and losing my colon and gall bladder to her.

It’s sick and sad and horrible, but I would rather be losing hair again than live in this stretched body. I would rather lose more organs than have to endure the embarrassment of seeing people who don’t know why my body looks this way.

I feel like an asshole typing that, but it’s true.

Of course, I calm myself down, wipe away the tears, and actually get my fat ass up off the department store floor. Because I realize these drugs, these nasty, horrible, strong drugs, have protected my vital organs successfully. That was our goal. To stop Lupus from taking anything else.

I would say we’ve half succeeded.

Yes, we have successfully stopped Lupus from taking additional organs. With aggressive steroids, anti-inflammatories, anti-malaria, chemotherapy, and now multiple procedures to inject drugs directly into the inflammation creeping up my spine and to my brain- we have, in fact, succeeded in stopping Lupus from taking anything else.

Except my pride.


  1. Fighting back is beautiful — and don’t forget, it doesn’t matter what other people think about your outer self at this moment, you know. The thigh-high boot strutting mama is still you.

  2. So sorry to read this…I’d feel the same way, as I’m a self-criticizing, vane bastard myself. But you know what? The people whose opinions matter know what’s going on with you and are glad you’re healthy and alive.

  3. And worst of all, I can’t spell “vain” right.

  4. Adding:

    My AI means I can gain or lose 20 lbs in a day or two sometimes. Lots of fun planning for that. (though right now I am on the OMG could I lose the 20lbs by tomorrow point)

    Also: because pred screws with taste buds–here are some things that help with the pred weight:

    1. Watch the salt super close. I swear–do not salt anything yourself because it will be inedible for the rest of the world and adds water weight. Prednisone causes you to retain sodium. (In addition to killing taste buds so you feel like you need *more* taste.)

    2. Yeah, you have to eat when you take the pred–make sure it is something rational. I found that high protein boost with the pred made it not rot my gut, hit too fast and limited the calories. Oatmeal also worked well.

    3. Be careful not to drink your calories thinking OMG–all I have done is puke/I feel like crud, I can’t cook, and I have no appetite so what’s a milkshake, a glass of chocolate milk or a soda or a fancy coffee–I need calories somewhere.

    4. Be vigilant about the calories consumed in general. Journal them as/before you eat them because otherwise pred fog will make you forget. Yeah, sucks, but helps.

    5. High protein, high calcium, low fat, lower carb, whole grains. Mini meals-no big meals.

    I will skip the ridiculous exercise advice because when you feel like death warmed over and it feels like exercise to make dinner leaning against the counter–you don’t want that stupidness.

    (unsolicited advice but sigh, pred weight rots)

  5. Sneadwoman says:

    So here is the thing about having an autoimmune disease — you aren’t the same person you were before you started taking the drugs, before the doctor told you that you have this thing and it’s going to affect the rest of your life.

    Yes, prednisone without a single doubt sucks ass. I’ve been on and off it for the past decade and every time I keep more weight, I can’t digest things properly, I rage against everything. My hair thins and I grow a hump on my back. My face swells and I look like I just stopped caring about myself.

    The thing is –those that know me — know the score. They know my meds, my disease, and that this body isn’t ME. It’s the thing I walk around in. And you know what? I haven’t stopped having great sex with my hubby just because my ass now has a zip code. And those that don’t know me — why should I care about those people? They aren’t in my life.

    So, mourn your former self. Mourn that woman you used to recognize in the mirror. Vent and rant — rage against this drug we love to hate. But remember the alternative. And remember — we ‘re in this for your BRAIN. Love you just as we do. Continue to be here with us no matter what your shape is.

  6. I so wish I could do something to take the pain, the discomfort and the side effects away. It breaks my hear to see you so sad.

    Keep fighting, Erin. You’re still in there.

  7. One of my friends once said to me “You know how everyone always thinks their kid is the best-looking? Well…(whispers) mine really is. I don’t know how I got so lucky, but my boy is really the most beautiful child I have ever seen.”

    And that’s how your family and friends love you. Like a mamma loves you. We love you like the most beautiful child on earth.

  8. I’m sorry. I wish there was something I could say to make it easier. I read your words and I feel your strength. (Hugs)

  9. Honestly? I have no idea what to say about this. I follow you on Twitter. I am moved by your post and it makes me feel awful for you. I don’t know what it would be like to be in your shoes, but I am pretty sure I’d be pissed, too.

  10. PS That Loralee has some mouth on her 🙂

  11. I don’t know how much comfort it will bring you but you, lady, have a beautiful spirit !Sure, fucking bitch ass lupus might be causing the outside to be less of a match than you want it to but know that your spirit is why we all adore you.

  12. What’s that we’re always trying to tell our kids — “it’s what’s inside that counts?” Turns out that is only partly true — what’s outside counts, too, especially when it doesn’t meet your own expectations. But Erin, you are so loved no matter your size. And maybe your body needs to be a little bigger right now to hold that big, strong spirit.

    I wish I could make it all better.

  13. Hey. There. Literally just found you via Twitter today and was going to ask you which posts I should read to get to know you better. Hmm, I think I found that post right here.
    I know nothing about Lupus (other than through watching House!) but am determined to find out more.
    Big love from across the pond, here in the UK x

  14. no words just wanted to give you my support.

    (came here via 5 star friday)

  15. All we can ever want from this is that you are healthy and then we start to realize that we really want more. We want to be healthy AND feel good. We want to have our body free of this mess AND we want to be pretty. Please remember that we, that’s all of us out here, want the same Erin we’ve known and loved for a long time and it had very little to do with all the pretty that came with it.

    Maybe that doesn’t help. But I want so badly to. I love you, Erin.

  16. I sat on that same dressing room floor, Erin. A different story, a different place, a different time. But I was there. Looking at the merciless mirror, and allowing it to reduce me to one skewed dimension: my reflection. Walking away defeated, hopeless, and so very alone.

    Thanks to your story, next time I won’t be alone. You will be there, and the other amazing women who wrote to you here. There will be a party on that dressing room floor: Too much or too little in all the “wrong” places.

    Reading your story did that for me: I will not be alone. If that’s not beautiful, I don’t know what is.

    And next time you go buy new clothes, look for me. I will be there.

  17. I heard about your post from my friend at Snuggle Wasteland. I am always saddened to hear about another woman suffering from Lupus. I am sorry that it has affected you so much. I have been in remission for about 10 years now — I did not have organ damage from my lupus, just the chronic fatigue and joint pain. I was able to control it for the most part by being on Plaquinil for about 7years. Not fun. I feel for you. I have some poems that I have written about lupus on my blog if you’re interested. Best wishes. — Grimm

  18. You know, I understand this way better than you know… and I’m here to tell you right now – that at some point, people will post your picture on the Internet, and it will be someone who was just damn thrilled to have their picture taken with you and you’ll see every part that makes you cringe now, and you’ll wish you could get that person to take it down so that no one can see it. And then, you’ll start to think about it, and you’ll realize that the only person who is “not seeing it” is you – that all around you every day, people see the same thing you do when you look in the mirror, but they don’t see the same thing too. They see a body that has extra weight and too many chins and sags in all the wrong ways – but inside they see this amazing woman. You’ll see it in their eyes if you look. They don’t see the words “ugly”, “fat”, “bloated”, “shameful” – they see the words “awesome”, “beautiful”, “feisty”, “brave” and “smart” – but more than any of those? They see “love”. You see the lupus whore, you see the loss of bits & pieces and the extra weight that is there nonetheless, and the puffiness and chins… but give yourself a break. See it through the eyes of the person who took the picture. People don’t take pictures of themselves with you AND post them on the internet unless they really kinda think it’s cool to have that picture out there.
    Erin – you are everything I described above that is good, and you are probably feeling everything else. But if you’re really at a point where you can’t believe it? Go look in your kids’ eyes. It’s there all of the time. Trust me.


  1. […] Democratic party leaning political blogger and a friend to many, Erin is currently publicly waging a harrowing battle against Lupis. While certainly the ire of GOP social web opponents may be understood, no human being — […]

  2. […] The Queen of Spain wrote about her fight against Lupus right now. Please read her post, Vanity. […]

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