#SUCKITLupus

Fruit and Chocolate

November 16, 2012 by Queen of Spain 3 Comments

So this is what it feels like.

I began shaking in the waiting room as I waited to be told my husband successfully completed shoulder surgery. I shook so violently that I got up and walked around and eventually walked myself downstairs and across the street to a nearby market.

My heart was beating so fast I thought for sure the cashier would see it come out of my chest as I paid for my fruit and chocolate.

Fruit and chocolate? Who buys fruits and chocolate anyway while their husband lays split open on an operating table?

Is this how he felt during all my surgeries? Is this how he felt every single time I was admitted to the hospital? Taken to the ER? Rushed into those doors unable to speak with my left side slumping?

No. It had to be worse.

And now I watch him sleep and recover. Just as he has watched me do a million times. As he watches me do daily during treatment weeks and chemo weeks- which just happened to be THIS week.

Somehow I managed to get through treatment and getting the kids ready for their multicultural festival for Thanksgiving (the famous Kotecki pierogis HAD to be there) and the double dose of chemo and then this surgery that I swear ripped my heart from my chest.

I knew I couldn’t lose him. Ever. I just had no idea how scary it was to be on that edge. And how many times my body has put him on that edge.

I still feel like there is a 20lbs weight on my chest and we are home and he is resting. I’m in awe that this is what I have put my family through so many times with this disease of mine.

I want to wrap them all up in my arms and swear to them I am never in pain, I am never sick, I am never leaving…even if it’s all a lie to just make them exhale this weight they too must feel on their chests.

The intensity of love is a wonderful and absolutely horrifying thing. It knocks the wind out of you in the most amazing ways, and reminds you exactly where you are supposed to be, with whom, and why.

This is my place. This is his place. And I will fight like hell to keep all of us in the places we belong.

Forever.

Filed Under: #SUCKITLupus

Of Course

November 5, 2012 by Queen of Spain 6 Comments

The last thing I wanted to do today was talk about being sick.

I just was not in the mood.

But as it turns out, today was one of those days I couldn’t get out of it.

It has turned into a job, as of late…the whole ‘talking about being sick’ thing. And that can be wonderful. People are being helped. Eyes are being opened. Money raised. Research done. Patients feeling less alone. I’m proud of all of this. I really am. I will continue to do it. I really will. But life has been kicking my ass as of late and it was one of those Sundays where I had zero desire to allow someone intimate access into my life, my home, my everything so it could be documented for the cause.

I wanted to sleep in and drink tea and read a book and knit. I wanted to go see a movie with my husband. I wanted to finish a monopoly game with the kids.

I wanted to NOT think about how grotesque I currently feel. How even my PJs hate my steroid body and how the heat has given me rashes in places I didn’t know you could get rashes, or that I had places.

I’ve been cranky for days waiting for medication to kick in and steroids to taper off. More swollen than usual. I bet if you threw me in the Pacific I’d bob up and down like a buoy.

So of course a photographer was going to follow me around all day. And take as many photos as humanly possible. Because it wasn’t enough that sitting over my laundry that morning I couldn’t even find a bra that was comfortable and it was reducing me to tears, I had to try and look presentable for the world.

The last time I looked presentable for the world my own grandfather pretended he didn’t know me and basically disowned me in front of his nursing home staff.

That’s not my granddaughter.

It’s ok grandpa. Really. I get it. I don’t know her either. I’m getting to know her though. She’s still pretty cool. But I get it. You’re not the only one, so don’t feel bad.

I am just so tired. The roller coaster. I feel like I am doing so well and fighting so hard and I have come so, so far. HELLO… DO YOU SEE HOW FAR I HAVE COME??!!!! HELLO!!! MEE!!!!! OVER HERE??!!!!

…and then someone sees and I stop flapping my arms because I realize they aren’t my arms and I cover them all embarrassed like and slink away back into my new found place of quiet where I just play the role of Mom. I don’t really tweet or facebook or talk to anyone or text or call anyone. I just go see my doctor, and take care of the kids.

Rinse, lather, repeat.

It’s safer that way.

I don’t get accused of doing too much or too little. I don’t talk to anyone about my illness or how it makes me feel. I don’t talk, period. I just wait.

Wait for the weight to come off. Wait for the steroids to be gone. Wait to be taken up on my constant offer of celebrating life. Because I’m here and I just want to enjoy the ones I love most.

Which put me in this ridiculous position of trying to help so many others ‘like’ me. As if we all have some sort of magic ‘sameness’ that we all KNOW we do not. As anyone with a chronic illness well knows, the ‘chronic’ part of that description of our lives sucks way worse than the ‘illness’ part.

But maybe that is why I got dressed anyway. I didn’t cancel. I didn’t call and stop the whole thing. Because I am hoping that by some miracle, chronicling this entire portion of my life…horrible bits and all, vulnerable parts and all, will mean something when this portion is over. Will help someone.

Even if it’s just myself.

So yes, today I was followed by a lovely photographer. For the second time. My family seems to keep tolerating these intrusions although we’ll see for how much longer.

And tomorrow, after I get the kids off to school, I plan on having tea and knitting.

Yes, I’m gearing up for Tuesday. Yes, I care more than I can possibly explain. Maybe that is why all of this is also so hard. The idea that on top of everything else, the fight, the struggle, the absolute essence of all we’ve worked for could be gone as the nation votes is not helping my mood. I can not believe half of the country is willing to play with my life, my family, my health in this manner…

…you can read my final blog post for the President’s re-election campaign at BarackObama.com right now, and please feel free to share it with as many people as possible before they head to the polls.

In the meantime, I’ll be over here. Hunkered down in my corner with my tea and my knitting (doctor approved in 15 minute increments before a joint stretch…but I can’t even go that long yet so don’t worry) and working on my diet.

Eventually my grandfather will see me again. As will others.

And, eventually, I will want them to.

Filed Under: #SUCKITLupus

Four Years Later: Indivisible

October 27, 2012 by Queen of Spain 13 Comments

I can tell you that many, many things have changed in our home in the past four years.

From celebrating the election of President Obama, who I backed earlier in the race than some which got me into a good bit of hot water, to my first visit to the White House.

Yes, the first year of the Obama Administration was a whirlwind for myself and my family.

I had taken on my first full-time job since having our first child and thrown myself in the same way I throw myself into everything- with all I have. I traveled, I spoke in front of small crowds, large audiences, students, and chatted it up with national news outlets.

My mission was to make sure the world knew that women online were a force. They could not only be the difference in elections but also change the world.

I’d like to think I succeeded in spreading the word and creating opportunities for every woman. The stay at home Mom, the career woman, the childfree, the childfull, the hobby writer, the hard core moneymaking writer, and even the just finding her way blogger.

At home, I would like to think I put just as much effort into my children and into my marriage. Making dinner when I could, making sure everyone was where they needed to be, had what they needed to have in their possession, got done what needed to be done, and was loved ridiculously along the way.

I was exhausted, but happy. It was chaotic, but fun. I looked forward to important conference calls, parent teacher talks, and husband wife romps later on.

And just as my life began to reach the peak of where I had always hoped it would be, everything came crashing down.

Everything.

And now nothing is where is should be. Where it was. Or where I want it to be. Parts of my body are missing. I do not recognize myself in the mirror and when I do, I struggle with what I see.

I try so very hard to keep the normalcy of what once was, only to find I’m the only one still trying. Or at least, the only one who seems to think life can go on just as it was.

Before Lupus.

BL. AL. It’s like Before Christ and After Christ, but without all the miracles.

I now cherish every moment I have with so much more enthusiasm than I thought possible, only to find blank stares from the kids with the typical ‘Mom, stop hugging me so tight’ eyeroll. And that romp in bed is more of a snore induced by drugs and the hope of maybe a kiss before work. Hope being a strong word.

I feel like I am living someone else’s life. Because this certainly is not the life I planned. It’s not the life I had. It’s not the life I want.

But it is, currently, the life I am given.

So I remain grateful that the stroke wasn’t even detected until after, and the rehabilitation was minimal. That I only lost part of my colon, not all of my colon, and I do not have to wear a bag…which certainly would have destroyed any hope I had of a sex life.

I remain grateful not having a gall bladder means I can only have one or two fried pickles instead of a basket full, keeping the 100lbs I have gained from steroids to just 100lbs.

And I will forever pretend I am grateful that the total hysterectomy, which finally rid me of the excruciating pain from the inflammation destroying my uterus and ovaries. I will never have another period and never have to carry tampons or pads or worry about any of that mess ever again. Even if it has destroyed me emotionally in too many ways to count.

I’m grateful my little family has grown closer in many ways, having gone through a tremendous crisis that my kids can now talk to producers on camera about it:

…the worst was when she got sick on Mother’s Day..WHY WHY DID IT HAVE TO BE THAT DAY!!

Now it only reduces me to minor humiliation and minor, inner sobbing.

Just like every single day when everyone finally walks out the door to go about their lives, and if I don’t have to leave for the doctor I sit here wondering what to do with my life…feeling again, only minor humiliation that I no longer am what I was to any of them, yet am something different. Some of which I am proud of, most of which I am not.

As I grow stronger, as we get a handle on this beast, I am getting a handle on me. And she’s pissed off.

I have no one to talk to about this anymore, because frankly no one should have to talk with me all the time about this. They deserve a break and a normal life. So I write here. After so many years- getting sick just after President Obama was elected, and now coming up on the next election, all of this is old old old old old.

And the truth of the matter is I hate it. And while I understand things will not be the same, I want them as close to the same as they can get. And I am fighting so fucking hard to get there. So hard. Too hard maybe.

I know I am the only one who can fight, I just miss doing it with locked arms all around me. My husband, my mother, my brother, my father- all my biggest supporters have their own lives that must be tended to and they can’t spend four years on me, me, me, and only me. I don’t expect them to. And I do appreciate their support now when it’s given. They remain amazing and there for me. In very different ways now, of course. But they are there. For that I am grateful. So many have lost their family over so much less. I’m trying to remind myself of that as I trudge through.

So four years later I keep getting asked over and over and over again if my life is better than it was four years ago.

No. No my life is not ‘better’- but that depends greatly how we are qualifying ‘better.’

It’s ‘better’ in that I am getting healthier. Stronger.

It’s ‘better’ in that our medical bills are becoming more manageable thanks to the Affordable Care Act aka ObamaCare.

It’s ‘better’ in that we did not lose our home due to foreclosure, or even get near foreclosure, because JP Morgan Chase worked with us to modify our mortgage (through HARP and HAMP) and I was finally granted the private disability check that took a chunk out of every paycheck I made with that full-time job I took after the President was elected.

It’s ‘better’ in that my daughter still has Title IX in place to play co-ed, PeeWee basketball, and she can score her very first every basket:

It’s ‘better’ in that the President has backed same-sex marriage, equal pay for women, he has repealed Don’t Ask Don’t Tell, he has taken care of Osama bin laden, he has put into place an Auto rescue of Detroit keeping many of my friends and family back in my hometown in jobs.

And, as always, his administration has taken the time to show the compassion to follow my illness and express their concern and thoughts when necessary. For that, I am grateful.

These are good people.

I don’t think any of us are where we thought we would be four years later. My family being probably more surprised than any of you.

But I know there is no way we’re going back. None. Just like I refuse to go back and allow this illness to overcome my mind, body, and soul…I refuse to let the political illness attempting to turn back the clock in this country to overcome our collective mind, body, and soul.

We are Americans and we do not give up. We have a strong family here in my home and we certainly do not give up.

I refuse to allow setbacks, and seeing that brink of the abyss, to scare me into thinking turning around is the right answer. I know nothing could be further from the truth.

I also know the hearts of all those involved. From my family, to my friends, to those working for me and you in the White House. And I know how hard *I* fight.

There is too much fight in me left to allow how far we have come to slip away with fast talking, slick, typical frat boys trying to sell me an easy fix.

There is no easy fix to Lupus, and as the President has said from day one, there is no easy fix to the mess we’re in. We will have to continue to work hard and continue to work together.

I know it is a lot to ask of anyone. We are all tired.

I’m willing to go this alone and shoulder it all for myself and for you and yours. But I ask that you join me, because we are so much stronger together. We are so much stronger when we work as a team.

We are so much stronger united.

…indivisible. Through sickness and in health. With liberty and justice…

…for all.

Filed Under: #SUCKITLupus, Feeling YaYa, Holding Court, Obama2012, Royal Decree, Stepford Crazies

Press Pause

September 25, 2012 by Queen of Spain 1 Comment

Even miracles take a little time. – The Fairy GodMother, Cinderella

There is a Lupus walk this weekend for our Lupus charity of choice, but our family won’t be there.

Don’t get me wrong. I would love for you to donate to the Lupus Foundation of America. They rock. They rock hard. And whenever we can, we send them money. We also encourage our friends and family to walk, donate…do what they can. Just this past weekend my beloved in-laws walked in my honor in Fayetteville, North Carolina’s walk. It was emotional for me.

We support the Lupus Foundation 110% and I’m even working to get members of Congress to join the Lupus Caucus at the foundation’s urging.

With that said, there are times my family and I just need to forget the hell that is what we have been through. Come Monday, I will be back in treatment, so we can never forget for long. But there is always a walk. There are always donations needed. There is always the constant reminder that our lives have changed.

So this time around, we’re not going. Aaron isn’t running. In fact, he’s run in one Lupus related 5k just after my diagnosis but that’s it.

Regardless, we’ve decided to spend this weekend at Disneyland. This is one of those times where I’m lucky to be a blogger, and have been invited to check out Mickey’s Halloween Party for what will be the… 5th? 6th? year in a row? Could it possible be that long? And then we’ll stay, as guests of Disney, so the following day we can check out the new Carsland. And then we’ll stay again, as guests of a friend, so we don’t have to brave Carmageddon 2 and can lounge by the monorail themed pool and then eat some Mickey shaped waffles for breakfast…in bed of course, as I am the Queen of all things room service.

Part of living with a chronic illness is understanding it’s chronic. That means I refuse to be Lupus 24/7 and my family shouldn’t have to feel obligated to walk every single walk or be at every single Lupus related event.

Yes, it’s very important to us. Yes, I want to raise as much awareness as possible. But I think I do a good job of doing my fair share.

I also think we’re allowed to take a break, just once in a while, from the drumbeat of illness. Never fear, I’ll be back with an IV in my arm on Monday. It won’t last long.

But until then…please, just until then…give me my rest. Let me pretend. Let me make-believe in a place made for make-believe.

Let me dress as a pirate and giggle with my fake bottle of rum and whistle for the dog to bring the keys to unlock the cell. Let my children laugh and jump with excitement as the fireworks blast overhead, begging to have cotton candy for dinner and turkey leg for lunch. Let my husband find joy in the smiles of his family as we plot Splash Mountain vs Big Thunder Mountain Railroad and experience Radiator Springs for the first time.

Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye. – Peter Pan

Filed Under: #SUCKITLupus, Feeling YaYa

47%, a Mother, & Damn Proud

September 19, 2012 by Queen of Spain 11 Comments

When you basically tell a mother, fighting for her children to stay fed and warm and with a roof over their heads, that they are moochers…or feel ‘entitled’ to handouts…yeah, you better believe the claws come out.

I sat here tonight thinking about all the people in my life and how hard they work, or have worked, over the years. My parents. My friends. My husband. Myself.

How many years of paying into the system that was supposed to be there for us when needed. It wasn’t supposed to be there for us with the promise of ‘shame’ and ’embarrassment…’ no, it was just supposed to be there. There was no shame or embarrassment in working hard and taking your money back out.

But don’t tell that to Mitt Romney, Paul Ryan, and the rest of the gang who has somehow turned the typical American dream into a nation of victims, expecting government to care for them at every turn.

Sigh.

Then I stopped and thought about how many of those people in my life, at one point or another, used a government program to give them a boost, or provide them a safety net, or even just furnished their fridge with some food when times were tough.

Parents on Medicare and Social Security. Grandparents on the same, along with a pension. Myself having once collected short-term disability from the State of California and now having applied for Social Security disability benefits.

Friends and their children on state programs to make sure they have vaccinations and well-checks. Formula. Diapers.

Other friends who used Pell grants and student loans to enter higher paying jobs. You know, the kind of jobs that are now supporting their families, have gotten them off all assistance, and have put them in a position to give back to their communities and put money into the economy.

And then there are those I know and love who have made the ultimate deal with the government and entered the government’s ultimate program: to serve their country in uniform in exchange for many programs unavailable to the rest of our citizens.

I’m not sure where this entire idea about government programs are all ‘bad’ came from. I’m not sure how or why those who use them are moochers or freeloaders or undeserving entered the public discourse, but I can tell you this…it’s all bullshit. All of it.

You may have some tiny percentage of people who abuse the system. Why they are the stereotype, I also have no idea. Why that is what is stuck in some conservatives minds as the ‘real’ 47% is beyond me when every stat shows otherwise…but I can’t convince crazy. They are, however, very fond of saying ‘oh but not you Erin…not people like you, either.’

Bullshit.

Because statistically, it’s allllllll people like me. The disabled. The ones who need temporary help. The ELDERLY.

Just recently, I was finally approved for long-term disability through my private insurance. We began this process in November. As part of this ‘deal’ I’ve also agreed to use the lawyers provided to me by said private insurance so they can now deal with the Social Security Administration on my behalf. You see, they don’t want to pay me…they would much rather the federal government forked over the dough.

I’m sure this somehow also lowers me in the eyes of the holier-than -thou conservative who think government shouldn’t be taking care of me. Never mind that in order to even get the money I put in out of every paycheck, this is what I need to do…none of that seems to matter…what matters to them is these are THEIR tax dollars and apparently since I am currently not putting into that system, I’m a freeloader for taking out.

I’ve gotten nasty emails about taking my kids out to dinner. I’ve gotten tweets asking where I got the money to buy a nice handbag. I’ve even gotten Facebook messages wondering how someone publicly discussing her attempts to get her mortgage modified and having a mountain of medical debt has the audacity to take her children to Disneyland.

It seems that the moment you have accepted any sort of government help, the citizens of said country believe it is their business to manage your family’s budget.

I could tell you all about what gifts I have received or what family has paid for. I could tell you what we’ve saved for in order to provide treats here and there for the kids or myself. I could even tell you what has arrived in the mail, generously, from wonderful friends.

But I don’t feel I need to explain. Nor do I feel it is your right to know. For all you know, I spent every single dime that came to me via the government on something entirely frivolous just to piss you off. And as far as you all know, that is my choice.

In a way, I wish I had, because the outrage has made me just angry enough to do it…and I could use a nice pair of $4k heels.

Instead, I find myself reminding people my husband is still gainfully employed and my current check comes from a private insurance company…but then I get mad I even said that. Even wanting to tell people that is bullshit. It may be none of your damn business but you sure have made me feel like I need to justify things. Something. Anything. All because of this utterly insane notion that somehow, somewhere down the road, it became un-American to accept help. It became un-American to pay into a system and then retrieve that money from the system.

But what is worse…what is even more insulting…is that somehow they have made me feel as though I didn’t work for what I have. That my father didn’t work for what he has. And that all of my friends and family and loved ones are not currently doing all they can to simply provide for their kids and their parents and wouldn’t choose work over taking help any day of the week and twice on Sunday.

Do you think I ENJOY Lupus? Do you think I ENJOY collecting my disability check so I can sit on my ass and receive treatment and NOT be able to travel and rule the motherfucking world as God intended me to?

Shame on you Mitt Romney. Shame on you Paul Ryan. Shame on you fellow conservatives for emotionally and mentally abusing so many of us who have worked, wanted to work, or tried to work. For publicly shaming anyone down on their luck, looking for compassion, looking for just a little bit of understanding and love.

I always knew politics was ugly. But never in my life did I think a group of people would stoop so low as to kick those who are down. Never in my life did I think those wealthy and those in power would laugh and spit on the poor. Never, ever in my life did I think you would treat a mother, this mother, with anything but respect for doing all she could to take care of her family. For doing all she could to get herself healthy so she could work again. For doing all she could to make sure she never had to take any money, from anyone. EVER.

Perhaps family and love and compassion means something a bit different to Democrats than it does Republicans these days. Perhaps you see dollar signs and we see people. You see deficits and we see a table in need of food. You see tax hikes and we see a child in need of books.

You see the entitled and the victims and the 47%…and we simply see Americans.

Damn proud Americans.

Filed Under: #SUCKITLupus, Obama2012

Rock the Red: Erin Kotecki Vest on Katie Couric’s New Show

September 13, 2012 by Queen of Spain 16 Comments

So I did something a bit daring while in New York. Ok, I did a few things that were a bit daring but today you got to see one of them on national television.

Source: katiecouric.com via Karla on Pinterest

Yup, that’s me. In a custom made-for-me dress standing next to the bombshell Kelly Wickham, and Jennifer Lawson. You may know them better as MochaMomma and The Bloggess. Then, of course, is Katie Couric and Karen Gilmour, and the only one NOT in red…the amazing Brene’ Brown.

I could talk about how my fears nearly overwhelmed me and I almost canceled when the tailor couldn’t make a dress that made me look presentable.

I could talk about why I’m in flats, while you’ll notice everyone else is in matching heels.

I could talk about what it’s like to wonder what the whole world will think when they last time they saw you on national tv you were slim, fearless, and talking about women in politics.

Instead…I want to tell you about what was going on backstage. Because backstage is the reason I had the courage to go on stage.

Many of you know my husband, and know all he has done for me as we have battled this horrible illness together. What you may not know, is that being the ‘caregiver’ of someone with a chronic illness might be worse than having the illness itself.

I can’t imagine watching him suffer, trying to help, and being able to do nothing but watch and wait. And wait and watch. And maybe do some laundry, and grocery shop and take care of the kids…because it’s all you can do while you watch and wait.

He’s watched me lay in a hospital bed more times than I care to remember.

He’s watched the clock tick by, slowly, as he waits for the doctor to come out of surgery to tell him I’ve made it through.

He’s watched me sit on our couch, healing, sleeping, typing, talking, frustrated and fuming that nothing was changing.

He’s watched me undergo treatment bi-weekly, take a million pills, inject myself with drugs, writhe in pain when things don’t work, and get up and smile when things do.

He’s watched his children watch me. He’s watched me comfort them and try to hold it all together. He’s watched them grow even closer to him as Mom became untouchable at times.

He’s watched me do my best to put on a brave face, when all I want to do is hide in his arms and have him tell me everything will be ok.

He watched me get so ill and small. He watched me get so large from the drugs. He watched me get angry at the world. He watched me screw up. He watched me say I’m sorry. He watched me become healthier, only to get knocked back down. He watched me slowly get stronger and healthier, as the roller coaster of the role of ‘caregiver’ continues.

And in that green room, he watched me own the hardest part of being the ‘sick one’ and him the ‘healthy one:’ He watched me tell the entire world it was ok to NOT be the strong one.

It took me too long to get there. So long, I could be a healthier woman now had I just not been so damn stubborn.

But I decided to dare greatly, and change.

Change is so hard. Especially for a strong, independent, take no bullshit kind of woman who was determined to have it all. The career, the kids, the white picket fence.

All the while with him watching with pride, with fear, with hope.

Not many people get a chance in their lifetime to have what we have. The friendship. The fierce loyalty. And the genuine respect.

When I sat on that couch, with one of America’s best know talk show hosts, he watched. But what he may not have known as he did, was that all I could think about was him and how he got me here.

I know how strong I am. I know I can get anywhere I want and put my mind to- from the White House, to a maternity ward, to the end of treatments because I will be, someday, in remission.

But on that stage, I had to own my faults and I had to declare to the world that my ‘caregiver’ was and is what has gotten me through. I did not need to be strong and I had to be vulnerable in order to survive.

I wish I could tell you it gets easier from there. That you dare greatly and then POOF! life is grand. But no. There is much work to be done. Because the wake of all those mistakes, the wake of all that fear, the wake of finally letting go and entering a new normal makes for hard work.

But for one moment, that one serene, I accept what has happened and I am ME moment, came in that red dress. And it carried over onto that stage where once again he watched. My constant. At the ready.

So I’m going to soak up this moment. For him. For me. For us. Because it will be gone quickly…just as the Katie Show aired, I was receiving an IV infusion cocktail to make my body stronger and push me to remission.

And I will only get there if I continue to dare greatly, with a great man by my side.

So put on YOUR red dress and tackle what YOU need to tackle in life. Make yourself vulnerable. Be brave. Be fearless. Step out of your comfort zone and do what I did: admit and admire.

Then rock the red.

On September 14th, 2012 at 12pm Eastern you can register to win a gift card from Gilt.com to purchase a red dress. If you do not win, never fear. You can still buy a dress at Gilt’s red dress sale.

And if you happen to like the design I was wearing, Gilt has arranged for you to have it custom made by one of their fabulous designers. Fit to your specifications, for us bigger girls. If it was a bit hard to see, it has these great Kimono sleeves and I blinged it out everywhere. I’m calling it the ‘Erin’ dress because it was made special for me, by their designers, for the show. Why? Because steroids do evil things to a woman’s body and nothing, sometimes not even regular plus sized clothing, fits right. So if you want the ‘Erin’ made for you, contact press@gilt.com and they will take care of you. Price will depend on size, etc. but the dress will be around $385. But then you can name it the ‘Jane’ or the ‘Debbie’ or the ‘YOURNAMEHERE’ and know it was YOUR red dress, made JUST for you.

And if this is all just too much, and you aren’t quite ready to rock the red…email me. Let’s talk about it. I’ve been there. As I told Katie Couric, I didn’t want to do it either. queenmediallc@gmail.com – or leave a comment.

Battling chronic illness is hard. It leaves its mark on EVERYONE in the family, in your life. It has left its mark on my marriage and I am grateful every day he shows up to watch, to help, to just be.

Because daring greatly means loving hard, and I wouldn’t have it any other way.

Filed Under: #SUCKITLupus, Feeling YaYa, Kaiser

Our Trip to the Democratic National Convention- Part II

September 10, 2012 by Queen of Spain 7 Comments

Things are different now. As a Mom with Lupus, needing a wheelchair for long walks, the kids and I are automatically treated differently where ever we go. So as we went into the Time Warner Cable Arena to hear Thursday’s speakers, I wasn’t surprised to find us in the ‘wheelchair’ section. That means you are behind a curtain and in a balcony where all the chairs are taken out and wheelchairs pull on in. We got to put a chair next to my chair so my nine-year old could sit next to me, but my seven-year old needed to stay on my lap. Due to the weather and the change from Bank of America Stadium, we were lucky to get in at all…so I wasn’t going to complain and demand another chair.

But this meant a 2nd grader on my lap for nine hours.

As soon as we got settled in section 213 the kids immediately got excited. Congressman Barney Frank was at the podium and the crowd was fired up. My daughter, in particular, cheered with enthusiasm every time the crowd did…while my son was a bit more reserved. Soaking it all in.

As the hours went on…and on…and on…the kids acted as kids do. They listened, they cheered, they ignored and played on their iPads, they cheered again, they watched videos on the jumbotron, ate concession food, and then started to slump a bit and wiggle as time ticked on and on.

Mom, what does he mean about that dogs don’t hunt? Don’t dogs hunt all the time?

Mom, I’m glad they are thanking the soldiers but I can’t hold the sign up anymore my arms are tired.

And then, over the course of dozens of speakers and many hours, something happened.

It was that something I had hoped might happen. The reason I brought them.

Mom, why do they keep talking about women getting as much money as men? Do women really not get as much money as men?

Why would anyone say climate change is a hoax? That’s just dumb. I’m sorry, I know that’s a bad word…but that really is dumb, Mom.

Mom, why can’t that lady walk right? I know the pledge and I can say it too- (puts hand over her heart) but why are you crying? What’s wrong with that lady on stage Mom?

Who was that last lady speaking? She was really awesome! She’s the leader of the whole Democratic National Convention? I really like her!

…and this went on. And I answered as best I could while holding one child and trying to keep another from kicking the chair in front of him.

Think about that for a second. My nine-years old son who was fidgeting like a typical boy, was listening intently enough to catch the President calling out climate change deniers. My daughter was INSPIRED by an accomplished female politician at the age of SEVEN.

My children did what I had hoped they would do, even if they found a lot of it “boring” and even if it was exhausting for all of us…they had that spark lit.

It happened. I saw it happen.

And then, to top it all off, once the President took the stage they were swept up in the excitement of it all. They forget how tired they were. They forget that just moments before they were complaining and ready to go home. They listened to every word. They waved their flags with pride. They leaned over and craned their necks to see him better at the podium. They jumped up and down as the confetti fell and cheered for their country, their own beliefs, and the President of the United States.

The convention gave our family moments we will never forget.

It took a lot out of me to get us across the country to Charlotte in order to be there while the President accepted the nomination. Something we could have watched easily on tv from home.

I get to start treatment just after we land back in Los Angeles, the kids will be back in school, turning in their reports about their trip and telling their classes about everything that happened. But my hope is they won’t soon forget that they were part of history. That they were there. And that their Mom was healthy enough to take them, even if she needed some help.

The President and this administration has done so much for my family with their legislation and their work, when the opportunity to travel to Charlotte crossed our path- how could I say no?

I got to share my family’s story with the world so they could experience exactly what the president talked about on Thursday night – hope, and yes, change. Change that comes from you and I blogging our lives be it about living with chronic illnesses to single parenthood to just the everyday monotony of being Moms.

Politics is personal.

Take your personal story- even if you think it doesn’t matter- and tell the world. It matters. If my family can travel to Charlotte just so I can talk to you about the Democrat’s platform, just so I can tell you what it means to support President Obama, just so I can explain a bit better why ObamaCare is vital to my health…then you can talk about your day, your life, your struggles as an American.

Politics is personal and in 2012 it is vital to making sure we re-elect President Obama.

As my kids will now tell you…it may be a bit boring, but the confetti at the end is worth it.

Let’s see some more confetti come November 6th.

Filed Under: #SUCKITLupus, Obama2012

Erin Kotecki Vest & Kids Head to the Democratic National Convention

September 4, 2012 by Queen of Spain 8 Comments

My Lupus ravaged body creaked getting out of bed before dawn this morning, as it does every morning these days.

I took my pills and made my usual cup of green tea, mentally going over the check list.

Sweatshirts in case it gets cold
the special bag that attaches to my wheelchair
Gum for the kids
Notebooks and pencils for homework
Those pills I switched to…no, not those, the other ones, the ones instead of the injection….

This went on in my head for a good 20 minutes before I sat here at my computer, wondering if I was crazy for attempting this trip at all.

But I know I’m not crazy. The President and First Lady keep asking if we’re ‘in’ this election.

As we pack up the car to head to the airport. Flying from Los Angeles, California to North Carolina…with two kids, two suitcases, a wheelchair, and enough medication to ensure I am comfortable for many days…we couldn’t be MORE ‘in.’

We will fight for those who fight for us. The kids know it. They understand without blinking an eye why this is so important…

Mom, the President has helped you while you are sick. Now we have to get people to help him.

That’s right baby. It’s time to help him.

See you in Charlotte.

Filed Under: #SUCKITLupus, Feeling YaYa, Obama2012