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. Oh, hon. I only know about the loss of female organs, and that’s a brutal road all on its own.

    I want to tell you all the right words.

  2. Fudgity, fudge, fudge I would be pissed too. I would be angry. I have come nowhere close to where you are right now with your health but I feel greatly for you and hate “her” for what she has been putting you through. I follow your twitter stream for those good days or at least the days when you are not consumed. Wishing you well and comfort.

  3. Oh, I feel your pain. I’ve been on steroids since October and have gained about 40 pounds. I used to be thin and I didn’t have these huge, swollen cheeks either. I bought a lot of new clothes before I was put on it, but I can’t wear really any of them anymore. Prednisone has pushed me from a healthy weight to near obesity. It’s almost worse than living with a chronic illness. ((hugs))

  4. So I’ll post this with as egotistical as it may sound to those that don’t know me – but it’s for you, and you know me.

    Come on, you see how hot I am. Drop dead handsome with a pretty good body. And you know how much prednisone I was on and what I went through. I even showed you my purple stretch marks.

    It’ll be the same for you. You’ll get off, you’ll get better, you’ll get yourself back. I did, so will you.

  5. I’m not sure how to comment. I can’t imagine what you’re going through. I want to say something intelligent and motivational. I want to say something that might make you feel better. But, I’m not sure I can. You feel how you feel…because it’s real. To me, I see a beautiful, funny, intelligent, loving woman. I see a strong, courageous fighter. I see someone who I wish I could be…if I were blessed with a 1/4 of your personality, your strength, your love..I would be a better woman. Keep fighting Erin. You are one beautiful woman.

  6. I love you.
    I cry for you.
    I cry with you.

    And I feel guilty. Not that I have to, but because I’ve heard this pain before. Even
    experienced some of it myself. Through the years, while I would sit silently waiting for my IV drip to finish at Dr. Hitt’s Clinic, people would always talk to me.

    Sometimes they’d pour their hearts out to me. I’ve heard the anguished cries of ‘her’ (lupus) while I was getting treatments to make my own immune system fight back … and I cry, Erin, because I so badly want your pain to STOP, for you to not have to take predisone any more OR lose your organs OR lose your hair.

    I could beg you to come with me my next trip down … but maybe I’ll overdose you with chocolate chip cookies and when you pass out from a chocolate high, I’ll lay you to sleep it off in the back of the SUV, tucked in with pillows, big fluffy blankets and the Ark Kids. We’ll feed you chocolate intravenously so you stay conked out and I can whisk you across the border to try the treatments that helped my immune system fight again. I so hate to see you suffer and fight through the pain and body ups & downs each day and I wish I could make it all go away. I hope to see you soon.


  7. Erin / please try going across the border experience with Sprite. I want you to get that swagger back. Amen.

  8. Thank you. You wrote the things that cross my mind every single day. I’ve been on steroids and IVIG for over a year. I get ready for work before the hubby comes home because I don’t want him to see my striped steroid belly. Health versus beauty: a disgusting battle we have to fight daily.

  9. This may sound like just words…but it’s not. 

    You. Are. Beautiful. 

    Your strength to keep fighting. Your wit. Your open heart to share your battles and triumphs. Your talent. Your eloquence. Your persistence. Your passion. Your dirty mouth. 😉

    Everything about you is beautiful. 

    It hurts, but please never forget that you are an inspiration to your Twitter/blog family. Yes, that’s right. I said it. We’re your extended family. And guess what Erin? You’re fucking stuck with us. You can’t get rid of this.  When you cry, we cry. I know many of us have tears streaming right now. When you’re happy so are we. When you’re pissed off, we curse at the computer screen too. 

    This is temporary. You’ve gotta kick that stupid bitch’s ass and you are doing a helluva job of it too. Your beauty will outshine that piece of shit Lupus any damned day. 

    You probably don’t want to hear this right now. I’m sure you’re rolling your eyes. But please, please look at this and smile. You are physically and emotionally one of the most beautiful women I know. I mean every word of this from the bottom of my heart. 

    I’m throwing an angry bird your way and he’s carrying the biggest fucking hug you’ve ever had. Cali is kinda far from Texas so it’s a yellow bird. That hug is gonna damn hard right into your arms. 
    P.S. It’s a Valentine’s Day yellow angry bird too, just so there’s extra hearts and boxes of candy in the background. 🙂

    You’re gorgeous Erin. Remember that. 

  10. I wish I could say something to make this pain go away. There is nothing worse than fighting a chronic illness and then having your self-esteem shattered by what the drugs that are keeping you alive are doing to your body.
    Cry, yell and scream about it. A good crying, screaming session does you a world of good.
    This will pass, as everything must. Your body will fight back, you will be able to lower your dosage and you will find your old self again.

  11. I know it’s no big help but just know that there are many of us out here in the same boat whether her name is Lupus, Diabetes, Cancer… we know a little of what you are going through and have our own crosses too.

    Your husband, I’m sure, doesn’t care what you look like. External beauty is the first thing that we see but internal beauty shows through it all.

  12. You are so loved. I’m only familiar with steroids and some days it makes me want to cry. Keep fighting, keep writing, keep being loved.

  13. Every single one of these emotions is completely rational and excusable. I like what Jeremy said. There wil be another side, but until then, maybe stay away from mirrors and use the reflection in your family’s eyes. They still worship you.

  14. Ok, so we’ve talked about this on twitter before. I know. You know I know. Steroids SUCK. They really do.

    I hated the weight gain. I hated the acne (and backne, thanks steroids). I hated the steroid face. I’m going to email you a photo of me during the steroids. And when I went to the doctor and said “Look, I think I’m having a reaction to the steroids (which i was not supposed to have, since it was an epidural shot) she said “Oh no honey, if it’s anything it’s just diabetes.” and I laughed. and then promptly never used that doctor again. Turns out I had a reaction that less than 1% of people do with a steroid epidural. My body metabolized it like a steroid and the steroids went systemic instead of just treating the back problem.

    the side effects suck. and I can tell you that we don’t care how they make you look until I’m blue in the face. But that doesn’t negate the desire to hide. I know. So I can just tell you that I’m here. I’ve been there, and it sucks. But we love you regardless. And I know you know that.

  15. I know we aren’t “girlfriends” or ever hung out together or even been in the same zip code, but I can tell you this, *she* won’t take your passion and your heart and your soul. Then and only then would I be truly worried for you. I watched as similar drugs took the shell of my Dad, but I could see past the puffy cheeks and large clothes to the man I loved, the man who was stronger than anyone I knew…..that’s what people who know you see, Erin. I promise you that.

  16. As someone who did the steroid dance and gained 40 pounds on a very petite frame and the craziness that it makes you go through…know you are not alone in this. There are those of us who have been there, done that and don’t mind you bitching, ranting and raving about it! Blow off the steam you need! Vent all you want! It’s healthy to do it! What’s NOT healthy is to keep it all pent up inside you to eat you alive!!!! Know you are in so many people’s thoughts and prayers on a daily basis! You are loved!!! Don’t forget that!

  17. You don´t know me, and I don´t know you except for the witty tweets full of strength where I read you.
    All I can say is there will be someone in Mexico cheering for you, sending blessings from the heart so “she” will go away and you can continue to be your fabulous self you´ve always been, except now, healthier.
    Soft hugs,

  18. Now’s the part where you teach yourself what you want your daughter to grow up believing. Drop-dead gorgeous doesn’t come in a size.

    You can swagger at any size and turn all the eyes in the room. Battle scars are beautiful.

    Prednisone plays with your head and sucks rocks, making this nothing you will get yet.

    You know I do this stupid autoimmune thing every day too. You know that I can still sparkle. You can too.

  19. Oh sweetheart. Predisone is such a cunt lickin whore. I watched a friend go through all of its torture (including the bloody cystic acne.gag )

    Perhaps a bra and some cleavage?

    Know you are loved an I just want to make you smile for a moment.

  20. Angie Boggs says:

    If you can still enjoy a delicious hug from your kids, you haven’t lost anything at all…
    You’re beautiful, Erin.

  21. *Likes TW’s comment

  22. *Also likes TW’s comment.

    I would not believe you if you said gaining 50 pounds in three months didn’t bother you. It would be bizarre for that not to bother you. There is nothing wrong with you for feeling that way. It sounds horrible. I would feel the same way, as far as I’ve come with body image.

    I don’t know if this will do you any good or make you want to punch me, but when I was overcoming anorexia and having to let myself gain weight when I didn’t want to, I thought of my skin as a sort of suit that I wore around. Not me, just a suit. I had to in order to let my mind release from wanting to fight what was good for me.

  23. I SO wish I could help you in some way. I really do, Erin. Fucking Lupus.

  24. Erin,
    I don’t know you. We’ve never met. We’ve only chatted briefly on Twitter about what rides I would recommend at Universal Studios. But, I’ve read your blog and have had the privilege of sneaking a peek into your brilliant, witty, beautiful mind and it is a beautiful mind indeed.

    I can’t say that I’ve seen many pictures of you; except the ones you posted with the ring from your son hanging around your neck: that made me teary-eyed. But what I have seen is beautiful. And what I have read from Aaron on Twitter about you is incredible.

    You are brilliant, and sexy and incredibly smart and you I can’t imagine dealing with the bitch of a fight that you’ve been dealing with all this time. You may not have your female parts anymore, but what makes you incredibly attractive to ALL of us is found in your spirit. Half of us wouldn’t have the fight you have and the rest of us wouldn’t have the balls to share it with the world.

    You keep on kicking ass; with or without the extra large clothes and we’ll keep on cheering you on. Long live the Queen.

  25. Oh, Erin. I, too, wish I had all the right words. Just know that when I meet you at BlogHer this summer I’m going to be squeeing like a little girl over it no matter WHAT you look like, because I big puffy-heart you.

  26. Mysheli got it right… It starts from the inside and still shows.

  27. Oh Erin, you’re a fighter if ever I’ve known one. You are going to kick this thing so hard in the ass, I just know it.

    I’m in awe of your spunk, your spirit, your amazing clarity about it all. I’m rooting for you; you remain beautiful to me in every way.

  28. You’re a gorgeous woman. And you come in a different package now than what you did before but you’re still a fabulous, gorgeous woman. I know that these words can’t bring you back to what you want but hold them close in your hand when you don’t see what you want. Because no matter what you look like, that’s how all of your friends are going to see you.

  29. For whatever it’s worth, I’m certain your husband would rather have you alive and at home and puffy than the alternative. I know I would.

  30. Hey, I would still totally fuck you. 😉

    P.S. Erin…having gone through some really awful hell with my body I am just going to beg you to remember that you are so much more than the body you’re in. And it’s understandable you feel inadequate…you have been through hell and your body has had massive changes. But I know that you are not as hideous as you feel. I know it. And when you love someone as fiercely as that man of yours loves you? Your very breathing is likely beautiful to him. Try to think about how you would look at him if he was going through all this.

    That is what got me through a whole lot.

    P.S. Let me know if you’re down for the whole “Sister Wives” thing. 😉

    P.P.S. I love you. xo

  31. Twitter introduced me to funny, snarky you. This blog shows me your hurting insides. I am honored to have met both. Sending lots of Mad Comic book love to you, as I’m sure all your fans are. Twitter and blog love is not so invisible. Can you feel it?

  32. I agree with everything above me. I can’t imagine what this is like, but I can say, your words are inspiring. You’ve got alotta fight in ya yet, and Erin, that is sexy as hell.

    Fuck lupus. You are still a goddess. xxoo

  33. I’m new to your blog, having followed your tweets for a bit. This post and learning of your experiences through Lupus made my heart ache. I’m sorry you have to fight it, but know you have a lot of ass kicking ability. Big virtual hug.

  34. Oh darlin, this is temporary, like everything else in life. I know you are struggling with not seeing who you are in the mirror, but she will be back. Right now she is fighting her ass off. The whore that is Lupus did not TAKE you away, she is in there, but YOU are kicking her ass. The middle of a war is rarely pretty, but there is so tremendous beauty in victory. And you will win.

  35. I’m not in my element here. I have survived horror and pain and death but I’ve never battled for my life. So I’m ill equipped to fully understand what this battle must feel like to you, not only physically but emotionally.

    But I can say, with clarity and resonance, that your truth and stark honesty is simply beautiful.

    And I believe, one day, you will be able to look in the mirror and feel that beauty again. I hope that for you.

  36. ugh sobbing and knot in my heart as I read this. sweet, honest, scary, painful and helpless. so very sorry.

  37. When they first diagnosed me with the (secondary) Addison’s I was immediately put on prednisone. And lots of it. It sucks. The fistfuls of meds I take in a day just plain suck. The pain I still have because clearly that is either not the only thing wrong with me or not at all the thing wrong with me (with no MD I couldn’t tell you) SUCK.

    Seeing what you are going through just sucks.

    It’s interesting you are longing for the physical person you were when I say every day I’d happily continue packing on the pounds if I could get through the day pain free and without a crying fit. The grass is always greener and all that. Maybe I’m wrong. I guess I would be just as devastated as you are now.

    I’m so sorry this is happening to you. I wish you nothing but the best in your fight with the evil lupus.

  38. 2happyaccidents says:

    Oh, Erin. You don’t know me, but I have followed you over on the Twitter for several years now. This horrid, bitchass Lupus makes you no less beautiful to me. You. Are. Gorgeous. I am sending you love, luv, love, lots and lots of love. Thank you so much for your bravery. You are my hero.

  39. you are strong and brave.
    you know how people say if you shave your hair off it comes back better than before?
    that’s kind of what i think is going to happen to you. you’re going to kick that whore lupus in the ass and re-emerge better than ever.
    yeah, that’s what’s going to happen.

  40. I know what you’re seeing when you look in the mirror seems right and true…but it’s not. What’s right and true is the love and hope and joy that you see in the people around you. It’s the love your children have in their eyes every moment they get to spend time with you. It’s the adoration your husband has for you that he shows in so many ways. It’s even in the comments and tweets and random thoughts racing toward you at any given moment.

    As women, especially, it’s near impossible to look in the mirror and not see our physical selves, for whatever reason or ghosts we’re fighting. But you, Erin? All you have to do is look into the monitor of your computer and see what we’re reflecting back at you – strength, hope, beauty, love, compassion, intelligence…you are these things, and no dose of prednisone will take that away.

  41. I go throught the similar thing every day. And I don’t have an excuse of a grave ilness and strong medicines. All I have as an excuse is PCOS. Not life-threatening, not mortal, just really annoying. I’ve been like that my entire life. I accepted that. I no longer lose sleep over the fact that I’m 21 years old, quite bright, nice, funny and really ugly.
    But I don’t look in the mirror unless I absolutely have to.

    Your fight is amazing and you should be proud of yourself. Don’t let anything and anyone convince you otherwise. You are as beautiful as you feel you are. So keep your head straight and be proud. It’s what inside what matters anyway.

    You win.

  42. Tameka Kee says:

    I’m bawling right now. I’m so sorry you’re going through this. You don’t know me. I actually just started reading your blog today, because someone tweeted about this post. All I can say is … you’re incredible. You seem to be a great mom. A wonderful wife. And there’s so much brilliance and realness and courage in your posts.

    Just please know, even in the midst of what seems like hell to you … you’re managing to inspire so many other people.

    You will win.

  43. I find throwing and breaking things against the wall highly therapeutic when I have intense frustration and anger that has no place to go. Do they have one of those throw-the-plates-against-the-wall businesses out there? Wear goggles.

    Also – I love you. xoxo

  44. I wish I had words that could do something, anything.
    Your strength is amazing. You’ll keep winning, and what’s inside you will always shine brighter than the outside.

  45. Im so sorry you had to write this, but at the same time Im glad you did anyway. It hurts to read, and hurts to understand even in part for you. Loralee gave some wonderful words, so did everybody else who commented before me. I am thinking of you, and I will be sending you endurance and comfort vibes above anything else. To endure, to keep being strong, and to be brutally honest here like this when you need to. Will go to sleep tonight thinking about you. Ive been away a while, have missed your writing.

  46. I can only imagine, and in fact, I can’t really imagine. I thank you for writing this, because I had no idea about lupus. It feels like a disease that attacks not only your body, but your self-esteem.

    I hope you’ll treat yourself kindly, the way you’d treat your child if this story belonged to him. For those of us who can’t see you, and never have, your honesty is as beautiful as beauty gets.

  47. Erin
    I’ve been lurking here awhile and felt I needed to add to the voices that want you to stay strong.
    I mediate my issues through music.
    Might help you, as well.

  48. Michael Duffy says:

    Erin, we’re going to see past it. I still see you as you no matter what I would see on the surface. People who love you can do that. I’m just as horrified, shocked and sad and can’t even imagine it but I already see passed IT to YOU. Of course I’m also pissed off to my core. It is NOT fucking fair! Words fail me but I’m grateful they don’t fail you. Nothing, not even “her” can take away Erin who we know and love. I’ll talk to you guys quite soon.


  1. […] This post was mentioned on Twitter by Erin Kotecki Vest, Michael Langis and Lupus Solutions, Kat Ribeiro Richter. Kat Ribeiro Richter said: RT @QueenofSpain: ok here goes …. Vanity […]

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