Author Archives: Queen of Spain

Put On Purple for Team #SuckitLupus

Purple is the color of royalty.

It is also the color of Lupus Awareness.

May is Lupus Awareness month and I’m kicking it off with a brand new purple mani/pedi.

Next weekend, my daughter and I will go get purple streaks put into our hair (possibly my son as well) and on May 20th, Aaron will be running his very first half marathon which isn’t an official Lupus run, but we’ve decided to make it our own Lupus run.

Why?

Because we’re raising money for Lupus research, education, and advocacy. Life-saving research, and that is no lie.

I was diagnosed in 2010 and we are still working to get this disorder under control in my body. We are close. We are so, so close. But understand this has been the hardest, most frustrating, most humbling, most earth shattering thing I have ever done…and I have not done it alone.

Aaron and the kids have been there with me every step of the way and have honestly had the harder job. My job? My job has been to rest and to lay around a lot. I mean a lot. Much of the time with an IV in my arm giving me infusions of IVIG and, now, Rituxan.

Life still goes on around us, despite all of my doctor appointments and treatments. There is still laundry to be done, lunches to be packed, dishes to be washed. And I spent the first year or so of this diagnosis fighting back the wrong way, making myself sicker.

I wanted to still be the best Mom, Wife, Co-worker anyone could ask for despite losing organs left and right. Another reason Lupus education and advocacy is needed. So other women and men do not make the same mistakes I made.

I am learning to live with a chronic illness and admittedly suck at it, but I am getting better. But it has been very hard, and there has been a lot of damage along the way.

More people need to learn about Lupus. More families need to hear our story so they don’t do what I did, and everyone needs to donate what they can so a cure can be found.

You have also helped me and my family along this journey. Lifting us up in spirit with laughs, with love, with meals, with hats, with gifts…for what seems like so long now. But that is the way of Lupus, it does not go away. It does not disappear after surgeries and medication. It is always there.

Which is why I am thankful YOU are always there too.

So Put On Purple, and continue to walk this journey with us.

With all my heart I thank you because I want to be around to be a mother to my children, a wife to my husband, and a friend to you.

The Haunting Facebook Photo

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I’m haunted by an image I saw this week when I opened my Facebook feed.

Haunted.

I was introduced to Inger Knudson-Judd and Philippa Knudson-Judd through my friend Lucretia several months ago as they fought to stay together.

Think about that for just a second and let it sink in.

As they fought to stay together.

You see, our country, being very Christian-based and puritanical in its views on many things, has an issue with same-sex marriage.

Despite Inger and Philippa being legally married in Iowa, the Defence of Marriage Act, aka DOMA, means the Federal Government does not have to recognize their marriage because Philippa is not a US citizen. So in Iowa they are married, sort of…cross a state line and they aren’t, sort of- heck, even in Iowa it’s unclear thanks to DOMA. United States, my ass.

So what you see above is a family, again, being torn apart as they are forced to leave each other. They have had to leave each other over and over again as immigration separates them time and time again.

And it’s not just the two of them who feel the heartache and pain. Their 12-year old daughter suffers.

I dare you to try to ignore the pain on their faces. They had spent five weeks together and were saying goodbye, again, painfully again, as this photo was taken. No one wants to leave for the airport, but imagine leaving your spouse and not knowing when you’d get to hold her again.

It is times like this I am ASHAMED of my country. Maybe now some of you will understand a bit about what the First Lady meant. But then again, if you didn’t understand what she meant you are probably not in a minority group, or had your family torn into shreds because white, Christian, men in DC deemed it so.

So you will have to forgive me as I get very angry when the likes of Republican candidates speak of DOMA and DADT…all these strange lettered words that seem inhuman yet are nothing more than inhumane. As I remain proud of our President that has stood up to HALF of this country, of whom he desperately needs votes from, and told them he has come a long way on this issue and will continue to fight for what is RIGHT, not what his religion, or any other tells him. He’s had to search his own heart, as so many of a certain time, a certain generation, or of certain backgrounds must.

Because this photo is just one of millions that should haunt you as it haunts me.

There isn’t a day that goes by where I wonder what I would do if I did not have my loving partner in life near. Even now, as we have gone through our own hell, I’m glad to have had him by my side to go through it with…not thousands of miles away, torn from my side when I needed him most.

Yet, in this country, some people hide behind the ‘love’ of their ‘God’ to inflict this unspeakable pain on families. They hide behind their definition of family, not caring what that means for their neighbors, their friends, even members of their own family.

I don’t want to open my Facebook feed and be haunted again by a family being torn apart by politics or religion or bigotry or evil. There is no excuse for what your belief has done here. None. I say that with a clear conscience because my beliefs take away NOTHING from you- they CERTAINLY do not rip you from the arms of your spouse or your CHILD.

There are now legal battles to be fought, some against the current administration. Luckily they are working their best to get through this election and out the other side so they can continue their good faith efforts (like DADT) in making GOOD on the President’s journey on this issue. I want to see it in action, and given some major steps in his first term, I have every confidence we will see more in his second. Understandably, others want it faster. I can not fault them for this at all. And I lend my voice to theirs in demanding promises be kept.

But the thought of a Republican in the Oval office makes me weep for families like Inger and Phillipa. While my family would suffer as well, I can’t imagine what others would go through. At the very least, I would still have my spouse by my side.

Spare me your opposition to same-sex marriage and why you think you are right. Because all I need is this one photo to show you just how horribly, horribly wrong you are. I can not think of a single justification for tearing a family apart and causing this much hurt, this much pain, this much suffering…ever. And so help me if you really do, still, believe same-sex marriage is wrong…may this photo haunt you a thousand fold what it has haunted me, and may it remind you every single day what your beliefs have done to innocent Americans.

Limbo

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Growing up Catholic I was always fascinated with the idea of limbo. Of course in our catechism lessons it was mostly about babies. Babies that weren’t baptized went there. In my mind it was this cloud-filled place where all these naked babies just sort of floated around.

You can tell I got a really fantastic Catholic education. Limbo = naked floating babies.

Anyway, I feel like life at our house is this big cloud and we’re all naked floating babies. I’m just really, really, really tired of floating.

We’re waiting for news on my disability status. We’re waiting for news on my social security status. We’re waiting for news on a possible home loan modification due to my disability. We’re waiting to see if my lab work continues its current trend so we can get out of this cloudy, hazy, floating naked baby place.

It’s not horribly unpleasant here in limbo. Which is pretty true of how I pictured it back in catechism. There are way more doctor’s appointments in limbo than there should be, but that involves waiting rooms and really, limbo is one big waiting room.

I need to find a way to push our lives out of this huge waiting room though. Sure we might be stuck here…ok, so we’ve been stuck here awhile. But who says limbo has to be just a boring doctor’s waiting room? Or floating naked babies in the clouds?

Life goes by even if you are stuck in limbo. And life is not slowing down. We just celebrated our kids’ seventh and ninth birthdays.

I don’t want them to remember these years as the times when they simply went to school, dealt with waiting room after waiting room, mom’s track marks from treatment, and the constant ‘sorry honey, I’m just too tired tonight.’

So I’m making an effort to do the small things I’m capable of doing. I may not be able to go more than a few houses, but I can walk the dog those few houses with my daughter for ‘girl time’ and talk about ‘girl stuff.’ We walk slow. We walk steady. And I make sure to listen to her every word, even if it’s about wanting to buy her friend a stuffed chicken for her birthday.

And while I can not STAND how much my son LOVES his Nerf guns, I will sit and help him make an ‘ammo box’ and a target so he can get better at ‘winning the wars with the guys at school.’ I will listen, and try my best not to lecture him about the evils of firearms, as he tells me all about the difference between each gun and why using one is better than another if you are playing in the front yard as opposed to the back yard. Who knew?

I continue to cheer on my husband as he trains for more races. Coming up, a fun mud run and then his biggest challenge yet- a half marathon. In a way I feel like he has busted out of limbo for both of us by turning his body into what my body currently can not be, can not do, can not even dream of just yet. My pride eclipses my jealousy by far as he actually wears his running shoes down to nubs by clocking more miles than I could even dream about. Yet even with all his running, he’s running inside these clouds that trap us all as we continue our wait.

I’m not sure if I’d prefer to run or float at this point. I just want to be present in each moment. Laugh harder. Laugh longer. Hell, some days just laugh at all.

You’d think with all these floating naked babies there wouldn’t be so much stress in limbo, but you’d be wrong. Waiting might be the most stressful activity of all.

So it’s time to learn to live in limbo, if we’re parked here awhile.

Laughter. We’re pretty good at that around here when we want to be. I have a feeling we can harness the power of laughter to keep us giggling here in limbo.

Lightheartedness. This one is so much harder than you’d think when everything is so very serious. Disease. Money. Stress. It doesn’t get more real. But I’ve learned there isn’t much we can do about it- so we have to just smile and take it one day at a time. When I think of it all together it could damn well kill me…so I have to stay lighthearted. I must. Everyone in the house must.

Life. We only get one. This is IT. We must have fun with it. FUN. Not stress. Not freak out over everything. But this is it. This is all we’ve got – and there is no way in hell I’m going to spend my days here crying and worrying. And believe me, I am the QUEEN of worry. But I have to let it go.

Let it go. Limbo has naked babies floating on clouds for crying out loud… how can you NOT let it go?

Love and love HARD. I’m talking so hard that I’m trying not to smother. Which is part of limbo’s problem, too. When it feels so scary and stressed, you hold on tighter. So I’m learning to loosen so we can love, love hard, but love light as well. When there is so much stress in one place, you learn that even the love can be a reminder of responsiblity and how badly you want it all to work out so everyone is happy and no longer in limbo, stressed.

Let go of limbo, Lupus, and keep laughing. I’m feeling it inside me…the change. The stress has to be gone so I can heal and the drugs need to work and I believe ALL of those things are happening. I truly BELIEVE. So I am laughing more, despite limbo. Despite the idea that it’s a scary, unknown place. Because I’m refusing to believe it’s scary and unknown. I’ve known it my whole life- it has naked babies! And clouds! And right now it has all those I love, and there is no way that is scary.

See, I knew all that catechism would come in handy eventually. Even if I kept getting kicked out. (true story…every Monday night, Erin would get kicked out of class for asking something crazy like ‘but who made the God who made the God who made the God?)

Clearly I was just channeling these wonderful nuns you’ve been hearing about on the news. I bet you they laugh. And love.

…and live. Even in limbo.

Snupus Day

You may look at this election cycle and see nothing but hate.

You may look at this election cycle and see nothing but greed.

Racism.

Socialism.

Communism.

Mud slinging.

Lack of compromise.

Lack of compassion.

Lack of understanding.

You may look at this election cycle and see no hope for bipartisan answers, an end to stalemates, an end to this hostility and violent, sexist, nasty rhetoric that has taken over the media, some candidates, and the discourse in our great nation.

I look and see something totally different happening…and it’s starting with a horrible disease, two very different families, and a box of snails.

…and all of Erin’s readers cock their heads sideways and go ‘huh’ simultaneously…

On Saturday, somewhere around 3pm-4pm Pacific I’m going to pop my moon-face, ravaged with steroids and the side effects of battling Lupus into a chat with WTIC NewsTalk 1080’s Jim Vicevich.

He’s one of those conservatives I complain about all day and night.

He’s also a fellow foot solider in the battle against Lupus, and we fight together.

Jim is raising money to build the first ever Lupus Center for excellence in Connecticut. A treatment center that will help everyone – from raging liberal, to conservative, to those who don’t give a flying flip about politics, to children who have been affected by this horrendous disorder that has turned our lives upside down. Yes, I said OUR lives…Jim has Lupus too.

Now I don’t live anywhere near Connecticut. I live in Los Angeles. But nothing, and I mean nothing, would please me more than to be there when Jim breaks ground on this center that I KNOW will help those like us who need it- because Lupus knows no political party and certainly does not discriminate between Republican or Democrat.

And that’s where the snails come in. My children have declared Saturday ‘Snupus’ Day… because tonight, as I took my very sore body onto the patio to try my best to pretend to NOT be in pain while they play, they found a snail family. A Mamma, a Daddy, and two baby snails. My seven-year old daughter declared the Mamma snail must have Lupus too…and she MUST be getting better because LOOK! She climbed up the SIDE of the bug house and drank some water.

This was a clear sign Lupus was being beaten back by every mother and every father…snail or human…progressive or conservative.

I need to make my daughter’s dream come true. I have lost 13 inches of my colon, my gall bladder, my cervix, my uterus, my ovaries, have suffered a stroke, a T.I.A., and continue to battle this disorder to KEEP the rest of my organs so my son and my daughter can find many, many more snail families on our patio and name them and learn about them and then set them free so happily ever after can occur.

Jim and I need your help to do that. We need your help in Connecticut and in Los Angeles. In my hometown in Michigan where I was raised and in Florida where my parents now try to make enough of a living to buy plane tickets to fly out to help as much as possible. And even in the wilds of West Virginia where my in-laws educate their friends and family about what Lupus has done to their daughter-in-law, how it has affected their son and their grandchildren, and how Lupus does not care where you were born, who you married, how much money you have, or how you vote.

Lupus takes a toll on spouses, children, caregivers, friends and family who love you and have to watch you go through something so horrible and yet that is about all they can do: WATCH.

Jim has found a way, in Connecticut, to do more than WATCH. So I am behind him 110% despite his totally ridiculous political leanings. (oh come on…giggle with me a little…) Because Lupus is NON PARTISAN, and when it comes to fighting Lupus…we are ALL NON PARTISAN.

And maybe, just maybe, if we can start with Lupus…we can move on to other things. Today Lupus, tomorrow the economy, health care reform, and beyond.

Yes, that’s the progressive dreamer in me showing up. But I’m not willing to give up on any of those dreams, and I expect you to honor them by at the very least honoring what my children have dubbed ‘Snupus’ Day.

Join the fight. Say hello to me via our video chat on Saturday. Go ahead and ask me anything from Lupus related to questions to politics, I don’t mind, so long as you donate to help make our Non-partisan dream come true.

Let’s find a cure for Lupus together.

*comments are OFF on this post…let’s not argue about politics, let’s cure Lupus

Hey Chick-fil-A: Not EVERYONE Has A Mom

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Lightheartedly I shared what I thought was a hilarious Chick-fil-A parody video the other day on Facebook. In case you are unaware of the back story here, basically Chick-fil-A makes nummy food, but they are owned and operated by bigots.

Yes, I said bigots. It’s ok. You don’t have to agree. However I believe that anyone who is willing to deny equal rights to others is a bigot. I find it rather clear-cut. You may not.

Chick-fil-A has sunk a ton of money into making sure all families have a mother, a father, and children. Not two fathers. Not two mothers.

While we go back and forth about this issue in our house because their sandwiches are so damn good, it is really hard to explain to the kids why we’d even eat some place that really do not want people we love to be able to have the same rights as everyone else.

The kids don’t understand.

We don’t understand.

Yet sometimes, we cave, and bring home a kid’s meal or two for the little ones on a busy day.

While I totally understand Chick-fil-A does what it can to get its message across by making sure they are closed on Sundays and by giving money to organizations that make me cringe…I wasn’t expecting them to try to get into my kids’ head via the toy in their primary colored baggies:

Now at first glance you might not think this is a big deal. But let’s just pretend, for a second, that you are one of the millions of American children WITHOUT A MOTHER.

Maybe you have two fathers, which apparently makes Chick-fil-A’s baby Jesus cry…but maybe your Mom died of cancer. Maybe your grandparents are raising you because your parents died in a car accident. Maybe, just maybe, your Mom left your family. Maybe, maybe, maybe, maybe…there are thousands of maybes and thousands upon thousands of families who are not a Mom, a Dad, and kids.

Maybe Chick-fil-A just made millions of children without mothers CRY with their chicken nuggets because they can’t seem to fathom a family comes in all shapes and sizes and every shape and size is STILL a FAMILY.

Every so often we’d shake off Chick-fil-A’s corporate policy in order to eat their yummy food. Not anymore. At least, I am not taking my kids there or giving Chick-fil-A another dime. Ever.

The truth of the matter is my children very well could be without a mother and had you stuffed that in their kids’ meal and told them to have a nice day I’d be up in your heaven sending down lightening bolts and making sure to smite the hell out of you for hurting my kids. Hurting them right in their heart. Hurting them where no one should ever hurt a child.

And for those families who do not have mothers, and who might have two fathers… how DARE YOU make these kids feel as though there is ANYTHING wrong with their family?

No, Chick-fil-A, it’s not a joke anymore. We’re done with you. See that questionnaire you have up above in the photo? The one you shoved in my kids’ faces? We’re checking the box that says ‘stamping out hate and bigotry by never buying Chick-fil-A again.’

Hey Ann Romney & Conservative Women- THANK a Feminist

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I’ve had treatment the past two weeks and have largely not had the energy to fight this RIDICULOUS ‘Mommy Wars’ battle going on with the Hilary Rosen/Ann Romney remarks.

Oh I’ve had plenty to say, believe me…but when you’ve had an iv in your arm for a few days AND you have to fight with your disability company (wait, they are not my disability company YET…they simply took money out of my paycheck for years…but now that I need them we shall see if they are TRULY my disability company) AND raise two children while your husband works long hours…the absolute STUPIDITY on tv and radio has to wait.

But now that I’ve had some time to rest and the kids are off for the weekend and my husband is home, let me jump into the deep end: Ann Romney’s husband’s record on ‘women’s issues’ SUCKS and I have been a stay at home Mom AND a work out of the home Mom. Hilary Rosen has a very valid point when she questions if the Romney’s understand the average family:

Now let’s be clear on one thing. I have no judgements about women who work outside the home vs. women who work in the home raising a family. I admire women who can stay home and raise their kids full-time. I even envy them sometimes. It is a wonderful luxury to have the choice. But let’s stipulate that it is NOT a choice that most women have in America today.

Why does this even matter? It matters purely because Mitt Romney put the issue of his wife’s views squarely on the table.

You caught that, right? This is NOT a choice that most women have in America today. And she is RIGHT. I’m fighting like all hell for my disability because we NEED MY PAYCHECK. I do not have the luxury of being a stay at home mom right now, like I did when my son was first-born. And what of the women who do choose to work because they WANT to? The right attacked them as well:

What Hilary Rosen has exposed is a psychological fault line that separates those women who simply oppose unfair gender-based barriers in education or employment or elsewhere from other women who actually despise and disrespect those females who choose to be full-time wives and mothers, instead of entering the workforce.

These “anti-gender” women have it in for anyone who embraces her femininity, maternal instincts and capacity to nurture as their highest priority — postponing or passing up other laudable opportunities to work at, say, a law firm or as a marketing executive. They despise the notion that some women may indeed be drawn — instinctively and happily — toward creating special and loving environments in which to raise their children, while spending all their available time sustaining and enriching those environments and those children.

Apparently Dr. Asshat, I mean Dr. Ablow, doesn’t realize that Rosen, and myself, were both stay at home moms at one point. And that we both aspired to raise our children and climb the corporate ladder. Something our male counterparts do daily yet no one blinks an eye. We do not DESPISE women who are drawn to be mothers full-time. WE HAVE STAYED HOME TOO, BY CHOICE.

Why is it when Rick Santorum suspends his campaign to actually be a father, the press fawns all over him as though no man has ever put his career before fatherhood before? Why is it that no one has asked Mitt Romney or Barack Obama why they didn’t choose to stay at home and raise their children instead of running for office and spending so much time away from their families?

And why is it that the same side exploding to defend Ann Romney didn’t say a word when Sarah Palin or Michelle Bachmann made the opposite choice, and chose work over being that Mom who stays home?

I’ll tell you why…because it’s just fine for conservative women to discover feminism and all the wonders it has given them, but a progressive woman is totally not allowed to discuss this on national tv- let alone live it- hence the holier than thou Right shall smite her down to where she belongs! Which is, apparently, the kitchen or starching Mitt’s really stiff looking shirts. Apparently only conservative women can be trusted to make the choice to work or stay home to raise kids, because only they are smart enough (guided by their husbands and God) to choose wisely. We feminists can’t be trusted with such a big choice, because heaven forbid we actually aspire to do something amazing like cure a disease or follow our dreams, and that might mean we don’t have kids or, even worse, we don’t get married.

Yup, those conservatives can’t possibly trust us smart women to do anything without a man…why, that might lead to the downfall of society! Or worse, them having to make their own damn sandwich.

Frankly the Right has a helluva lot of nerve to attack Rosen’s comments when they are waging an all out war on women and attempting to turn us all into Mrs. Romney. And please, spare me the ‘there is no real war on women’ crap because we females have been allowed to attend school and learn now for some time and we’re capable of calling bullshit when we see it.

We’re also capable of THANKING the feminists who came before us, giving us the CHOICE to be whatever we want to be- from a mother to a scientist to an elected official.

Maybe that is something conservative women should try, instead of fighting us. THANK your feminist sisters. Thank them for allowing you to take that job outside the home when your husband gets laid off. Thank them for allowing you to pick up that part-time job while you home school your kids.Thank them for helping to push through legislation that will get them equal pay for equal work, and legislation that will support their needs while they attempt to juggle parenthood and having a career. And when you are done thanking them, take a step back and realize how different they all are.

Some are choosing to have children later in life, so they can see their dreams of becoming a teacher or farmer or doctor realized first. Others are choosing to have children as they attend school, and then go after their dream career while their partner stays home to raise the kids. And still others are choosing to remain childfree, instead focusing their lives on the many other things they have dreamt of forever.

Hilary Rosen and I have both been raising our children and working in politics, huh…sounds rather similar to Ann Romney who is on my tv right now, stumping for her husband.

Imagine that.

I wonder if she has thanked a feminist?

Messes I Keep Close

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When I don’t know what to do, I usually make a huge mess. I also tend to revert to the only things I know.

It’s a throwback to how I was raised and all the superstitions that came with a Catholic upbringing.

So I’m sitting here, tears streaming down my face, with a mess in front of me that I have no clue what to do with. There’s a worry stone, given to me by a friend of my husband’s… she had picked it up in Tibet and it was to help me get through my first pregnancy which was very difficult.

It wasn’t supposed to be difficult. I was supposed to be one of those women who worked until she gave birth and glowed and life went on as normal while I incubated our son.

I was supposed to be a lot of things.

Of course back then we had no idea I had Lupus, and we had no idea that premature labor would land me on bed rest for months, causing horrible strain on my husband and the rest of my family. I could do nothing to make the situation better except lay down and hope our child was healthy. During that time, that smooth worry stone was a like a hug of peace around me.

Yes, I know that sounds corny. But when you have no control, you’ll take a worry stone from Tibet and rub it with your thumbs even if everyone laughs.

Life went on, and our son was followed by our daughter and then my health began to deteriorate. Always with me as the cause of everyone’s strain. And always with me having zero control over the illness that was causing it all.

I remember lighting candles at the Catholic church in Santa Monica close to my husband’s work at the time. Why? Because I didn’t know what else to do. I had no control and everything practical we could try had been done.

I remember standing in my back yard in the dead of night, hopped up on 80mg of prednisone (steroid) and incapable of sleeping. I sat on the cold brick edge in our yard and talked to the full moon. Legends tell me the moon is a woman and if she can pull those beautiful ocean waves into the sandy shore…surely she could cure me of this terrible pain in my body and the terrible pain it has caused those around me.

More recently I took the kids with me to light a candle and the church was closed. While my husband and I laughed this off, inside it was like a punch in the gut. I NEEDED to light a candle, and the CHURCH WAS CLOSED.

Again I find myself having one of those days where I am in need of something and am at a loss. Do I light a candle? Rub the stone? Talk to the rain steadily tapping my patio?

No. None of those were right. So I dug into my bag of magic I keep close to me always.

My favorite Aunt died not too long ago, so the pain is still very sharp. This morning after I dropped the kids off at school I rummaged through my purse…The stone from Tibet is in there. The necklace from my wedding must always be close, along with the first jewelry the kids bought me from those school ‘shops’ during the holidays. You know the ones where they turn to rust before you haven worn them a week but you must keep them forever.

After deciding I needed my Aunt’s special, Pope blessed rosary, I pulled it out of its case and began hysterically sobbing.

It was broken. Just like the church doors were closed. Just like each pregnancy was supposed to be perfect. Just like my life was supposed to be ME helping OTHERS not the other way around, my very special rosary was broken. It’s circle was incomplete.

My dead Aunt’s rosary was laying across my chubby hand, in two pieces instead of one. The irony was nearly too much for me to handle.

Not being one to just accept the broken rosary, I sprang into action. Admittedly rather unthought out, rushed action. Typical of me.

One of the links was unlinked so I scrambled and rummaged through my husband’s tools to find something to smush it back together and make it whole again. It had to be whole again. Everything had to be whole again. Now. RIGHT NOW.

My therapist laughs and shakes her head at my patience issues. This is a perfect example.

Standing in the garage, looking at a box of tools I never use and barely understand, I realized I was dealing with a very delicate piece of wire where the rosary had broken. If I pushed it too tight with the pliers, it would snap. If I didn’t push hard enough, the circle would remain broken. The rosary incomplete or destroyed. These were my options.

But it’s really hard to try and hold my swollen hands steady and see through tears and fear and pain. But I grabbed the best tool I could find and fumbled and dropped it to the ground almost as quickly as I picked it up.

I did the best I could to gently push together the link so it would stay. And as I was pushing I realized there was a third option and the one I always need to look for when feeling as though I must act or I must fix or I must somehow make up for the illness that is not my fault yet has fucked up everyone’s lives.

So instead of forcing the rosary to be perfect and whole, I very simply put it where it needed to be and gently pushed the wires. But not before letting out my anger that it was broke, yelling at it being my stupid luck it would be broke in the first place, and forcing and pushing and being totally angry with it in my overszealous and impatient way, making it 40 times worse than when I started.

So I stopped. I just STOPPED. The circle is now whole, but it’s not right. And that’s ok. And I’m telling myself that it is ok it’s not perfect. Nothing is going to be perfect with Lupus in the picture, but it can, at least, still be.

I’m setting down the rosary. Putting it back in the bag next to the stone from Tibet. I’m doing my best not to put too much faith in my new voodoo doll that is supposed to ward off bad luck and evil spirits.

Instead I am cherishing the wedding necklace. The special jewelry from my kids. The watch my husband gave me. The locket also given with so much love. And the key worn around my neck, with a similar one worn around my daughter’s neck…carried by my son on his backpack, and carried by my husband.

While I may be getting better, Lupus leaves a strain on families that can not be described. The strain and pain can not be fixed by candles, rosaries, or worry stones- no matter how hard I wish them to, or try and force them with shaking hands in a cold garage on a rainy day.

Patience. Love. More patience, and hard work are the only way to go. It hurts like hell…like no hell I have ever known. And it’s a hell worse than any surgery or any treatment or any hospital stay that this evil disorder has put me through. But I refuse to let it win.

But I need to remember I am winning the battle it has waged against my body. It has been slow and it has taken what feels like forever but I AM WINNING. So you damn well better believe I will also win the battle it is waging against my life and the lives of those around me.

I’m slowly learning how to win that battle, and my weapons will not be rosaries or candles…but humility, understanding, trust, and patience. And learning how to shift the focus from myself and the illness to everyone else and their needs.

When your life is nothing but doctors and ivs and lab work, that is harder than you might think.

But I will find the faith in myself to do this, just like I have found the faith in myself to fight and keep fighting. Because no matter how hard it gets, I know I am never fighting this alone.

Lupus made one hell of a mess and it’s time to start cleaning it up…cleaning it ALL up.

Ashley Judd, THANK YOU

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I’ve been on and off prednisone for about two years now. It has taken me from feeling sexy and slim and hawt to feeling puffy and moon-faced and anything but hawt.

It has saved my life.

But, like many women before me, I have been struggling greatly with the puffy and, as my kids say, ‘squishy’ frame these steroids have given me.

In fact, struggling is probably the really polite way of saying I FUCKING HATE MY PUFFY FACE AND MY PUFFY BODY BECAUSE I FEEL LIKE EVERYONE IN THE WORLD IS STARING AT ME AND JUDGING ME AND IT MAKES ME FEEL UGLY.

I’m a smart, educated woman who knows better. I KNOW damn well that beauty is within and that we live in a society so obsessed with weight and glamor and looking good that it creeps into the back of my otherwise sane mind and pushes me to think insane thoughts.

While fighting Lupus I have turned down television gigs for fear my puffy face and body would detract from my political message.

While fighting Lupus I have turned down events (when healthy and able) because of my puffy face and body for fear those meeting me for the first time would think this is how I normally look and would judge me on my appearance.

…and I know better.

Today, actress and activist Ashley Judd destroyed the media for daring to speak about her recent puffy face…which turns out is puffy for reasons similar to mine- she was sick for more than a month and had to endure several rounds of steroids:

Consequently, I choose to address it because the conversation was pointedly nasty, gendered, and misogynistic and embodies what all girls and women in our culture, to a greater or lesser degree, endure every day, in ways both outrageous and subtle. The assault on our body image, the hypersexualization of girls and women and subsequent degradation of our sexuality as we walk through the decades, and the general incessant objectification is what this conversation allegedly about my face is really about.

She goes on to write about how the media went after her puffy look, and has gone after her ‘flawless’ look and then claimed she had work done. Judd, however, steals my heart and makes me sit up straight with this reminder:

When I have gained weight, going from my usual size two/four to a six/eight after a lazy six months of not exercising, and that weight gain shows in my face and arms, I am a “cow” and a “pig” and I “better watch out” because my husband “is looking for his second wife.” (Did you catch how this one engenders competition and fear between women? How it also suggests that my husband values me based only on my physical appearance? Classic sexism. We won’t even address how extraordinary it is that a size eight would be heckled as “fat.”)

Not only does the patriarchy (which she also discusses) teach us to only value our beauty, but in times where we dare step outside their idea of beauty, we are to fear that our husbands or partners will no longer love us. We are to fear they will leave us. We are to fear our friends will mock us. We are to fear the world will talk about us. We are to fear…we are to fear…we are to fear…

…fuck fear.

I have faced death in the face and won. I have nearly lost EVERYTHING and here I sit with a roof over my head, two amazing children, and a husband who has stood by my side and felt every IV, every test result, and every pound as the ‘puffy’ moved into our lives.

…fuck fear.

It’s time to take my life back. And to give back the lives of those around me who have done nothing but sacrificed so I can still be here. If that means there is more of me to love in an unconventional beauty way, then so be it. Because I’m done letting Lupus rule my life.

I am reclaiming my independence.

It never even occurred to me that this message of what is beautiful had been continuously bombarded into the depths of my brain over and over and over and over again that I have been mostly miserable with my chronic illness not because of the constant pain or the horrible surgeries or the possibility of death…but because I was made to believe I lost what was most valued in this culture.

What a horribly sad and pathetic culture to have done this to me since I was a small girl. What a horribly sad and pathetic woman I am to have believed it for too many years.

Yes, I take much of the blame. I am a strong woman. I am a feminist and would tell everyone I know who I truly find beautiful it is because of their heart and mind, never once thinking of their physical features. Yet when it comes to myself, it crept in slowly. So slowly I didn’t realize it had taken over my head until just recently.

I’m ashamed I let it get this far. I am ashamed I let the hump on my neck (a side effect of prednisone) stop me from wearing my hair up. I’m ashamed I avoided buying new clothes, staying in pj pants for doctor’s appointments, because I couldn’t handle going into a plus sized store.

But none of that matters any longer. I’m taking back the old, independent, strong woman who recently has only been alive inside my mind. She doesn’t give a fuck what anyone thinks about her. She will go on CNN and with a puffy face to debate any issue and not think twice about the haters who have no substantial argument so they will prefer to make fun of her size.

And she will no longer refuse to avoid events or dinners or lunches or parties (when her doctor says she can go) because to hell what you all think of my puffy face and body. These steroids saved my life and mean I AM HERE to hold my husband’s hand and take my kids to school and LIVE.

We’ve lived in Los Angeles a long time now and I have never been one to be impressed by actors/celebrities. I’ve interviewed many and don’t get star struck and certainly could care less that they are worshiped around here.

However, I am officially impressed with Ashley Judd and wish to say a very heartfelt ‘thank you.’ As an actress she is certainly under more scrutiny than I could ever imagine, and she most certainly has to deal with people noticing if she leaves the house in her pj bottoms for a doctor’s appointment, puffy faced and not feeling well from whatever ailment has her on steroids.

But she is doing it, right along with me, and giving the middle finger to anyone who dares question her beauty or what they think is a lack there of.

She certainly has said ‘fuck fear’ simply by writing and encouraging all of us to have a conversation about this culture that has sick women actually worried more about how they look than if they are getting healthy.

Thank you, Ms. Judd, for reminding me that misogyny is everywhere and as you said “…It affects each and every one of us, in multiple and nefarious ways: our self-image, how we show up in our relationships and at work, our sense of our worth, value, and potential as human beings.”

This human being is officially encouraging others to join the conversation so we can change how it affects us, and more importantly, how it affects our daughters and sons. I do not want them to go through this, and at the very least, I want the culture to have improved and evolved by the time they do.

In the meantime, I’m going to enjoy and live and continue to get well. I’m going to radiate the beauty within so it’s contagious and hopefully my son, daughter, and husband feel it every moment of every day.

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photo by Megan Hook Photography