To Get What I Want…I Got To Have A Lot*


I would say of all my issues, this is my biggie. This is my albatross and my strength. Ask anyone who knows me and they will confirm I have control issues.

I need to be in charge and if I am not in charge but involved I need to know every detail in order to be comfortable with a situation. If I am not comfortable with the situation, I have anxiety. Or I want out. Or I will make that situation implode, so I can take over or be done with it.

As we all know, with Lupus I have no control. I’ve been left out of every decision this disorder makes from taking my uterus to giving me a swollen body. My entire self has been shifted on the outside and it’s startled me so much I can’t catch my footing.

The loss of control has rendered me beyond off-balance and pushed me to an edge. I don’t recognize myself physically, and I’m starting to not recognize myself mentally. As I admitted to a friend the other night, I am lost.

You can’t just go from traveling the country speaking to audiences, appearing on cable news shows, sitting down for meetings in the West Wing to staring at your computer screen playing Angry Birds and watching Gilmore Girls and NOT have some fall out.

I’ve been struggling with how to regain myself. How to find me in these endless days and nights of doctor waiting rooms and the daily school pick-up and drop-off routine.

I find glimpses of what feels like me here and there. Writing helps me remember who I am and what I do. Cooking dinner for the family, when I’m able, makes me feel useful. As if I contribute something while otherwise being a slug on the couch or in bed. When I finally went shopping to accommodate my new body I felt like maybe, somewhere in there, I could find a way to scream the old me was in there somewhere with a pair of shoes or hat.

But none of it has been enough. I keep swirling down this whirlpool of suck that drags me further and further away from me. And I need to find a way to take some control.

Part of that is in my current state of style. In short, there is none. I grabbed a few tops that fit and didn’t look horrible, because all of this is temporary. But as the days turn into weeks and the weeks turn into months, I feel like I can’t even express myself in the way I look, let alone the rest of my life.

Cue the ideas of dying a purple streak in my hair. Buying funky scarves. Perhaps relishing my moo-moo like state and finding some crazy plus size clothes that scream ‘FUCK YOU WORLD YOU HAVE NO IDEA WHO RESIDES IN THESE SWOLLEN CHEEKS.’

But in all honesty I have no idea where to begin. Or how to do that. Or how to even start. And by starting, does that mean I am forgoing the hope that this is all temporary? Because the idea of this lasting awhile makes me want to run straight off that edge I’m teetering on and jump.

Then I think maybe if I just embrace it, I’m taking control. If I just say ‘Ok, this is how it is right now, and I’m going to live it to the fullest instead of crying and complaining and moping about every new side effect’ … maybe that will make this all more tolerable. Because let me tell you, this ain’t easy to freaking tolerate. Not for me, not for anyone around me. And no one is saying it should be. This is not some picnic that we should all just sit around and hug and love and celebrate. This is hard.

But it’s how we handle the hard. And right now I am not doing such a great job.

So tonight I’m shopping online. I’m thinking about ways to take some control over my body. I realize right now Lupus is ruling the inside…but if I could just rule the outside a bit, maybe I will feel more like myself and less like the whore disorder is winning.

I welcome your ideas.

*My apologizes to Janet Jackson


  1. Have breakfast with me and I’ll let you pay. I’ll even let you order my breakfast and control the entire conversation. Heck, you can even call me names if you want and I’ll say, “Yes, Mistress, Erin. Thank you, Mistress, Erin.”

    I can do that for you. I’m just that kind of friend. Within no time, you’ll be feeling in control again. At least for breakfast.

    PS. Rocky sends her love. But my offer is better.

  2. (this is @watergatesummer from Twitter land…) ..I hear you…I heart you and what you are going through…I am so sorry you going through this…and I hear you….I wish I was there…
    I would take you shopping……we would go to funky unexpected stores……YOU are still you…you just need to find things that help you feel that way…..that sooth your soul….whether it be soft purple hats or moo-moos that help you float through this…anyone who lives with an Illness that takes things away….changes things…takes control away hears what you are saying…..I get it…you are NOT alone…with any of this…and you need to know this….and yes, having such a disease there are fine lines between accepting and fighting what IS…… ( I wrote post about MS that I think you might get….it is a similiar issue-not the same….read it sometime, top post of my EnigmaCafeBlog,,)……what I am trying to say is , reading this post made me cry, because I think what you are describing is painful, but not meant to be gone through alone….so please know this YOU are still in there….Beautiful you is still there….and that is all that matters…don’t let Lupus take YOU away from you…..

  3. Juju Rama says:

    Accept that this is the way it is for now, that you can’t control this right now and that you have soooo much more going for you than just how you look.

    Or look at it this way, say you started off weighing 365 lbs and had been dieting and have now arrived at your current/weight size, you’d be feeling pretty darn good about how you look and where you are right now. The only reason (well…not the ONLY reason but a big one of them) you feel bad about how you look is cuz you started at the other end of the scale. And either way, you’re more likely to revert to your original size, meaning if you’d started off at 365 you’d be more likely to head back up then down.

    So consider yourself blessed in that, in your case, you’re more likely to revert to your old weight which is down the scale, that you have a family and lots of friends who love you no matter what, and fans that hang on your every word.

    Buck up girlfriend. Lupus sucks but isn’t all you are.

  4. I am idiot -this is the link.,, sorry….btw….I am painting sneakers this week- want me to paint you a pair ? they made me feel better…actually smile…I bet they would you too….

  5. I hear you. You have to do what makes you feel good. I firmly believe emotional health effects physical well being. Reasonably priced and super cute stuff.

  6. I also hope that this chubby body of mine is temporary but in the mean time I’m learning to embrace it with the help of some tumblr pages one is another one Is if you like those I have a few others I can email you the whole list when I’m not on my phone. oxox hope you find a bit of peace.

  7. It’s OK to mourn for your old healthy self. This month it will be four years since I was crippled. I’ll likely never be the man I was again. And I mourn that, and sometimes I throw myself a pity party, though it’s easier for me because I don’t have family in the house to hide it from.

    But sometimes I do stuff anyway. You probably won’t pick CPAC to go to (:-D) but find something and GO, even if, like me, it leaves you sick for a week and weak for another. That short time I was out and doing something that was important to me.

    I can’t promise you it gets better. But you either turn your face to the wall and let the person you were die, and whatever is left of you follows, or else you make adjustments and do what you can. I still don’t carry the laundry basket, I tow it the length of the house with a rope I tied to it. And I hang on to little things. Some days it’s all I can do to climb up into my SUV, but I refuse to surrender it.

    Your mind will play tricks on you. Mine still refuses to admit when I plan a day that grocery shopping will take at least twice as long as it should, and leave me wiped out by the time everything is put away. But I do get it done eventually.

    It’s OK to mourn the parts you can’t do. But going forward means focusing on the parts that you can.

  8. I think this is the curse of the Type A personality, Erin. I think it will happen to all of us at some point in our lives, it’s just happening to you way too soon. You’re not just mourning your healthy self, but your go-getter self. It’s hard to be so driven and not have that affect who you think you are and how you see yourself. When the meetings and the media and all of that is gone, it’s hard to keep from losing you.

    But you really are still there. You’re still *you.* I hear it on your blog and on Facebook and on Twitter. You’re still the same wonderful, passionate, driven Erin. With maybe a little more in depth knowledge of reality TV. (-; You’re going to be forced to be a little more laid back and it will take time to adjust. The new normal is never easy, but if anyone can conquer it, you can.

  9. Laura (Nothinbettah2do) says:

    Hey Erin, I really enjoy your sense of humor & life insights. I say, just keep doing what you are doing by enjoying the simple things in life w/ Aaron & the kids~your friends and just remember who you are inside…you are still you! And, online shopping can be fun! Take it from an expert. : )

    Also wondering if you are a candidate for the new Lupus medication? I know you are aware of it.

    : )

    ; )

  10. Hello, long-time lurker here.

    Just want to say as a person also having a hard time dealing with new-found fatness, the worst moments for me were when I wanted to go swimming and it really helped me to get some pretty swimwear.

    You can just measure yourself at home and get them custom made. Mine fitted perfectly.

    I love the water, and now I don’t feel like I’m too gross to get my clothes off, I feel like people are wondering where I got my awesome swimsuit.

    Good luck!

  11. This has gone from being a physical issue to a spiritual one. I suggest trying meditation and studying a little Buddhism – it seems to have such a good grasp on suffering and getting through it. My minister, who is Buddheo-Christian, says “Open your eyes and be with what is, as it is, right now.” That is the hardest work on the planet. It’s easy to try and distract ourselves.


  12. The control lies in how you approach it.

    Yesterday I was surprised by having 2 total strangers go through my house taking pictures… even of the crawlspace. I live in a 3 bedroom house with 7 people (most of them children) and we haven’t had a functional washer for 2 weeks.

    I can say that most people who AREN’T on “Hoarders” have never seen the piles of stuff that were all over this house… and people took pictures. They were the mortgage appraisers. They took pictures to decide whether to refinance our mortgage.

    Now, if someone offered me a straight up gift of a million dollars to take pictures inside my house yesterday, I’d have said no. When they arrived, I briefly considered telling them they were at the wrong house (mortgage? I don’t know anything about mortgage. I only speak Estonian, and I rent.) or murdering them (I could hide a lot more than 2 bodies under that laundry, trust me.)

    But they went through, and when they left I cried for a while. And it was apparent that I was crying MOSTLY because I felt I’d let my mother down. My mother died when I was 17. She made vastly different choices in life than I have, and, on the whole, I own that, and am comfortable with it. But yesterday I felt I’d shamed her, and really, there’s not much that’s further out of one’s control than the debt one owes the dead.

    So, when I’d mostly finished crying, I grabbed all my kids, explained it, and ASSURED them that no matter how long they lived, there would never be a day when they disappointed me, or let me down, and that I wanted them to KNOW that. Long after I was gone, they had that in the bank.

    And then I went on. Pi day, after all.

    The thing is, maybe I didn’t need to drag my mom into this one, but I did, and coped on that basis. You might take this experience as a teaching on how we all depend on our appearance more than we think possible, or more than is mentally healthy. Or you might cry and pick out a FeROcious mu-muu.

    But there’s your control.

  13. I think Beregond has said it very well. Rejoice in what you can do and focus on what you can do. Remember last week when the kids were sick and you were able to mom them the same way as you ever had? That’s the stuff worth hanging on to.

    What’s happening to you sucks. What you are getting though is a horrific version of what we all get. We all have limitations. We all have roadblocks and obstacles. Sooner or later, life does take its toll and you can either wallow in it or tell it to go fuck a duck and do what you need to do.

    You are strong and beautiful where it counts, in the ways that last long beyond a nice shape and youthful appearance. In the ways that matter to your family, to your friends, to all of us who care about you.

  14. If you decide to go for the purple streak, Manic Panic is the way to go.
    I’m normally a purple-haired person but being sick, I neglected it. And oh, dyeing your hair crazy colors brings back some control and makes looking in the mirror so much happier.
    I wish I had better advice to offer but I’m struggling with health-related control issues too.

  15. LongLeafSoaps says:

    Hi Erin,
    You can have all the spoons in my drawers if it would help you rule your world again.

    But for cute fat clothes, check out Lane Bryant…no, really, Lane Bryant….I know it sucks, but their clothes help make the “fat” a little more bearable….

  16. There are no sure fire answers. I know all the questions you are asking, all the things you want/hope to find out are the answers. My body changed. And it’s hard. Hard to find beauty in what is and to identify with what is now. But let yourself do it. Just go there. Doing that doesn’t mean you have signed a blood oath forever to what is now. Doing that means you have signed a blood oath forever with who you are always and always will be. No matter what, honor yourself, make yourself look good (whatever that means on any given day) because all of that will feed the soul that starves everything you look at you and see less than. The ego/vanity is a bitch mother to fight. But fight the good fight. At the end of the day, if your soul is fed, the next day may be hard but it won’t feel so impossible. I think of you so often.

  17. you make me smile with welled-up eyes. YOU ARE BRAVE, lady.. Ive never met you, but you inspire me.

  18. Pixie Hornet says:

    I describe myself as type triple A personality. Several years back I lost my health, moved to a new state, started a new job, got married and had a baby all in the span of one year. Needless to say I lost every bit of control (real or perceived) that I had prior to my illness. I had to learn to live in survival mode…getting through one day at a time. It was such a dark time but eventually I came out the other side. Looking back I find that although my preference is still to have as much control as possible I adapt much quicker when I don’t. I am able to surrender…I am able to accept the fact that the big things are often out of my hands. I believe this was the lesson I was supposed to learn. To be still and let go. Lupus is so unpredictable…it can’t be controlled…it can only be managed. The only way you will be able to endure (because let’s face it…this is a marathon not a sprint) is by getting comfortable with the unpredictable. Sounds nearly impossible for a control freak I know…but the alternative is going to be a constant feeling of frustration. One of the things that worked for me personally was yoga. The practice and discipline helped me learn to quiet my mind and taught me how to breathe.

    Wishing you health a flare free days.


  19. Okay, Erin, I know when you look at your friends who are heavier than the social ideal NOT because of any illness but because that is the body type nature gave them, you do not think to yourself, “What freaks!”

    I know when you look at someone else whose body HAS changed shape because of illness you do not think “Moon face!” or “Hunchback!”

    I know you don’t base your judgement of another person’s value on the shape of their body, or their fashionable clothes or hair.

    I know if I were too sick for a time to work, you would not tell me that I was worthless. You wouldn’t call me a “slug on the couch.”

    You are judging yourself more harshly than you would ever, ever judge another person. DON’T DO THAT. I’m serious. You’re being really mean to a good friend of mine! You are saying hurtful things about one of the most amazing women I have ever met! Knock it off.

    You are brilliant and beautiful and a wonderful wife and mother and you have done more to change the world before 40 than most people do in an entire lifetime. You ARE STILL that same woman. Which is why you have not, and will not, let this disease beat you down.

  20. This is definitely a more spiritual issue than a physical one. I don’t know what your physical limitations are—I know you’re probably exhausted—but what about getting outside and walking around the block? Or taking a yoga class? Something to just move easy to keep you feeling alive. And that will improve your outlook. It’s a way to embrace what’s going on without succumbing to it.

    You’re much more than what you see on the outside. It’s just hard to remember that right now.

  21. I admire you for being so brave to face this trial.. If you feel exhausted try to read
    the Bible, it will help you in everything..
    my prayers for you..

  22. Hi Erin.

    I don’t know you save for this blog post, but I wanted to tell you that I think style can be empowering, and I hope you can find a way to use fashion as a tool to feel like you have a little more control.

    I’m a clothing designer. I’m fat and have rheumatoid arthritis, and there are times when living in my particular body really gets me down. I can’t control my body in a lot of ways, but I can control how I express myself with fashion, and sometimes that helps.

    If you would like anything from either of my stores ( or, I’d be more than happy to give it to you at a super duper ultra discounted rate and ship it for free.

    Good luck to you, and feel free to contact me if you ever want to talk.

  23. oops, that’s

    my apologies!

  24. Oh, hon. I hear you. I’ve been there. Several times now, and it’s a mindfuck to be in.

    What finally helped pull me out of it recently was a) changing medication (I stopped my treatment. Not recommended.) and b) moving away from the cause for a little while. The more I was a “poster girl” for cancer the more I hated it. So I finally took a break, told *everyone* and concentrated on what I do — reading and writing science policy, and creating moments to treasure with my kids.

    Can you write about politics more? Or something else that totally absorbs you for an hour you can forget about lupus? Can you just say no to the things dragging you down and the constant “bucking up,” feel the anger and the pain, and then declare tomorrow a day to NOT think about lupus?

    I know, easier said than done. I KNOW. But I feel better when I’m in control too, and when I told cancer to #suckit, I was going to enjoy that day – that hour – that MOMENT anyway, I was a thousand times better — for that moment — and then it gave me a hope to cling to, that tomorrow I could do that again.

    And moment by moment, I’ve been in a better place mentally.

    All my wishes that you will find your way to that better place soon.

  25. Oh, and swimming. Can you swim? After I got over my fear of being seen boobless, I found my way back to the water and it feels amazing. My aches melt away, and the pain is so much less in the water. I found a warm (87′) pool really gave me relief from the aches that no amount of vicodin could calm. Not that it will take all of yours away — but it might help you relax in the body you have right now.

  26. oh susan mentioned swimming, so so true..amazingly once in the water it is magical….I am sending you photo of the sneaks on twitter-I have plenty of paint -would gladly make you a pair just to cheer you up….

  27. When I was in my 20s, I went from being a vibrant person to a sick person — completely screwed with me because my identity was wrapped up in what I could DO. It took me a long time to get over the idea of not being able to do the things I used to be able to do (I went down kicking and screaming), and I still have my bouts of being completely pissed off. The hard part, like you say, is knowing what you’re SUPPOSED to do, which is, of course, accept what’s happening to you. Because “getting sick” or becoming limited in some way is what happens to almost everyone at some point. It’s an exercise in letting go and impermanence, right? But so much easier said than done. . .

    I read some great advice recently that’s helped me get through some of my mini nervous breakdowns (I like to throw little temper tantrums about my condition). Try to think of the way you’re feeling like the weather. When there’s a storm, it looks terrible, but eventually the clouds burn off and things change again. Where I live, there’s a saying — if you don’t like the weather, just wait a minute. You know for a fact that you don’t always feel terrible (really down, hopeless) and sometimes you feel stronger (empowered, ready to kick ass). Just try to remember that this is going to pass when you’re in it. It’s just a moment. You can do it. You’re a tough cookie.:)

  28. Lots of great advice here, mine is a little more superficial, invest in accessories. Scarves aren’t a bad idea, earrings, bracelets, shoes, purses, whatever you are into. That way you can keep the clothes pretty muted and inexpensive (since the size change is likely temporary). Wearing beautiful things makes us feel beautiful whether it’s a handpainted silk scarf or a really intriguing costume jewelry brooch. I think you hit on a key emotion here when you said you felt like your self-expression was being stifled by your new appearance. Lupus can’t take that away from you.

  29. I’m telling you. They need to make a shirt that says “‘roids are a bitch!” or something. I wish that there was a way to tell the world it’s not you, that there’s a medication that has stolen your body. That was the worst part. People could tell I was puffed up and gaining weight and they didn’t understand why.

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