Kaiser

We Will Stand There

April 16, 2013 by Queen of Spain 3 Comments

I have an eight-year old. I have an eight-year old and a 10-year old and we always stand at the finish line well before it’s time.

Their Dad runs. And we stand there with signs and smiles and we watch with anticipation searching the sea of runners waiting for him to cross the finish line.

We’ve played this scenario out over and over again at that finish line. Sometimes right at the line. Sometimes a block before. Sometimes just after the runners cross. But we are always there.

Just like all those families were there. Just like eight-year old Martin Richard and his six-year old sister, his other sibling and their Mom. We stand there. Just like they did. We have done it so many times…because no matter how sweaty our loving runners are, we are so proud and we want that hug so bad.

As the stories pour in about so many families and so many runners and so much hurt and pain all I can do is promise that when my husband’s body is ready again we will stand there at that finish line again.

We will stand there with our signs and our smiles.

We will stand there because we are proud of our runner, but also because we will remember.

Every time we ever stand there ever again, we will always remember.

Filed Under: #suckit, Feeling YaYa, Kaiser, Royal Family Outing, Stepford Crazies

Celebrate the Joy in life NOW…RIGHT NOW

April 2, 2013 by Queen of Spain 4 Comments

Update:

For those who are not aware yet, Dawn passed away yesterday almost as I was writing this. We wish strength and love to her husband Mike and her boys.

Our family doesn’t get it sometimes. Aaron and I can sit next to each other on the couch and tweet back and forth, giggling. We laugh with friends and they tweet back…it’s a community.

Dawn and Mike have always been around for those late night and middle of the day giggle sessions. They were the Ethel and Fred to our Ricky and Lucy. Or vice versa.

Dawn and I even got sick together. We even started to get better together. Then, not long ago, there was news Mike was taking Dawn to the ER. The next thing we hear there is a surgery and tumors and bleeding and the words inoperable and hospice.

I, of course, had been lost in my world of treatments and swollen ankles and worrying about things that didn’t matter. So when I caught the news it came second-hand and it very literally sucked the breath right out of me.

No. No. These are our buddies. These are the people we joke around with online and knew we’d hang out with on our next trip to Michigan- just as soon as my Doctor said I could travel. No. No. This is not happening.

Aaron and Mike understand what it’s like to be caregivers to women they love. The kids, the jobs, the meals the worry. My god the endless worry. Dawn and I could bitch about pills and surgeries and pain and being stuck in a hospital bed or on a couch. Wanting nothing more than to take the worry away from our Aaron and Mike and, most of all, our kids.

I refuse to give up hope that doctors can find a way to help Dawn. We still have trip to Michigan to make where we all have to go a Tiger’s game and eat Coney Dogs after. Our kids needs to hang out.

But most of all, Dawn and I need some girly couch time. Where we may have to rest, but we’ll rest together.

Mike is asking donations be given to Melanoma Research Foundation so smart people can continue to try to find a way to fight this asshole cancer. There is also another donation drive where the funds are going to help the family with meals, expenses.

I hope beyond hope for a miracle. And in the meantime, follow Dawn’s advice and check your skin. CHECK YOUR SKIN.

Filed Under: #suckit, #SUCKITLupus, Auto-Immune Menu, Feeling YaYa, Kaiser, Stepford Crazies

For Better or Worse

March 25, 2013 by Queen of Spain 4 Comments

This is the week my husband and I celebrate bringing unconditional love into our lives forever. Love that no one can describe to you, that no one can begin to try to get you to grasp no matter how hard they try. Our children celebrate their birthdays. Two years and six days apart. One a decade old. The other, eight.

The rest of the country will be watching the United States’ Supreme Court hear arguments on another type of love. A love that can be legalized with the institution of marriage. Something else many find hard to put into words. Many find beyond difficult to explain the overwhelming joy it makes them feel.

My husband and I were married and had our two children. In my mind, we became a family when we declared our love for one another in front of our friends and family and even before that when we became domestic partners in the eyes of the law in order to make sure we could take care of each other in sickness and in health and in any legal matters. This happened BEFORE we were legally married.

Some would say, “…isn’t that enough?”

NO. It’s NOT enough.

Just because we were domestic partners does not mean that we were protected had we left California’s borders and it certainly did not protect us in the rest of the US and it’s territories. To this day, there is no one else I want making decisions for me should I become unable, than my husband. It does not matter why…it’s who I CHOOSE. I CHOOSE him. We are adults and adults should be able to make sure the person they want is allowed in the hospital room with them when they want, makes important legal and medical decisions, and inherits any and all and everything I find necessary-from property to personal items. And if I do not happen to write it down in time, it should be common sense this is the person who is in charge of all these things and GETS all these things. Oh, and by the way, this person also gets full custody of OUR children. The ones born of love.

The ones born into a family made of love.

In a “marriage” that did not include God or a preacher.

It also was not guaranteed to create chidden.

I now have no uterus or ovaries. If you were to ask my husband before hand, there would be no promise this “marriage” would produce children. Apparently my body agreed.

As you can see, I’m knocking down all the reasons many say you must “save traditional marriage” left and right with our family.

We did not have a traditional wedding. We did not have a traditional wedding ceremony. We do not have a traditional marriage, unless you consider “traditional” one that means we love each other and wish to spend the rest of our lives together.

As the country, once again, consumes itself with what “marriage” means in this day and age I only ask that you consider one question: What does family mean?

Our family started in a way many would consider illegal and immoral. Yet here we are, with two beautiful children celebrating birthdays and we’ve stood by each other through every vow repeated to one another long ago.

That’s more than I can say for millions of Americans claiming to be truly “married” while shunning my husband and I, while saying things like “why can’t they just have a civil union and not be married like us” and while trying to convince the country separate can be equal. In fact, I think I’ve heard that before…didn’t turn out too well then either.

Filed Under: #suckit, Count Waffles, Feeling YaYa, Holding Court, Kaiser, Princess Peanut, Stepford Crazies

I Second That Thank You

February 28, 2013 by Queen of Spain 3 Comments

It’s been several days since the kids and I jumped up and down on the bed when we heard the First Lady read the word ‘Argo’ from that gold and red envelope at the Academy Awards.

My husband came bounding up the stairs grinning from ear to ear and we all kissed and high fived- he was one of the many that had worked on Argo, so this Oscar belonged to him as well.

Not long after the rambunctious celebrations I listened to Ben Affleck thank his wife, fellow West Virginian like my husband, and talk about marriage being hard work. Momofali echoed my thoughts immediately after the awards show, writing “In my opinion it was the perfect venue for him to say such a thing. Hollywood is one big fairy-tale, complete with beautiful people and princess dresses, and millions of people were watching. I commend Ben for taking the opportunity to say that even with loads of money, good looks and an Oscar in his hand, that marriage is work. If it’s a struggle for them, what about those of us with financial problems, average appearance and no awards of which to speak?”

It took me this long to write this post because of that work. It’s been hard to blog at all lately due to that work. Hell, I was upstairs and he was downstairs when Argo WON and my husband won because I was putting the kids to bed and he wasn’t…part of that work that we all do every single day that is the balance of marriage.

Argo seemed to me to be a labor of love. A story told about a mission that too, was seemingly against the odds. Marriage is against the odds these days. Hard work and some finesse is needed to get through. Which is why I gave Ben Affleck a ton of credit for looking over to his wife and telling the world I love and her and our children and our family and yes, it takes WORK.

Because he said what all of us married folk are thinking about marriage, about our spouses. Make no mistake, I love my husband dearly and I am in this for the long haul, but marriage is hard work. Not easy work, HARD work. Which means most of the time I am muttering under my breath to him …. Argofuckyourself.

Filed Under: Feeling YaYa, Kaiser, Men and their duckcamps, Stepford Crazies

Love Taps

February 15, 2013 by Queen of Spain 4 Comments

I remember that feeling sitting in class, going through each Valentine and wondering if there was a deeper meaning to ‘Bee My Valentine’ with the picture of a bumblebee flitting around on that breakaway card that came in a pack of 24.

Because that is what some of us girls do. We look for the deeper meaning and hold the Valentine against our chest convinced the bumblebee was a symbol for something that was a symbol for something that was a symbol for something that clearly meant the boy who scribbled his name on the bottom loved us more than anything and we’d get married and have babies and live happily ever after.

No really.

I did this.

I still do this.

And I’m married and I have kids and I will continue to live happily ever after. Even if every day I want the ‘I love you’ and I want to hold the Valentine against my chest and dream.

I watched my daughter go through each and every Valentine from her bag last night. My son tossed his on the ottoman and only dug inside to find a piece of candy. And I realized some things just don’t change.

At one point my daughter came over to me and said “Mom, no one got you a Valentine…we didn’t get one for you.” And upon hearing those words my son immediately stopped his game (so you KNOW it’s a big deal) and rubbed his hand up and down my arm, consoling me. Truly worried and upset I had no Valentine.

It’s ok Mom, you can have one of mine.

And I explained, again, their father and I have our own tradition. And that just as he had to sign each of his Valentine’s for his classmates, someone signed that Valentine for him, and it wouldn’t be right to give it away. Even if it was very sweet.

Sweet matters. Traditions matter. That time taken to scribble that name on the bottom of the card matters. But I have learned it matters more daily, not just on the ONE day. It matters in the morning when walking out the door. It matters at night when going to bed. It matters when scared and instinctively fingers intertwine.

Today, the day after Valentine’s Day, I sat in the waiting room of my doctor’s office feeling miserable emotionally. I wanted to be clutching that Valentine to my chest and making juvenile wishes. I wanted a hand on mine to calm down my beating heart.

Instead I was sent an elderly man who didn’t think twice about walking right up to me and asking about my scarf.

Did you make that?

And he actually poked it with his cane.

Just reached on over and poked the scarf hanging around my neck with his cane! Then he used the cane to lift the bottom of the scarf up and examine the stitching.

In my head the first thing I thought was…oh please, not now. I don’t have the energy.

I explained I did not, in fact, knit the scarf but I wish I had the talent. And I smiled politely hoping that would end the conversation.

But he kept going. And going. And going.

His wife wandered out a few minutes later, I’m not sure how many, glanced at him talking to me and seemed to survey the situation…was he bothering me too much? Was he talking too much? Should she intervene? I gave her a polite smile letting her know it was alright, we were fine. She seemed to decide I had it under control and went back to writing a check at the front desk.

Over the course of the next 10-15 minutes I learned my new friend was 87-years old and his wife of 62 years (!!!!!!) was a young 85. I learned about his time in a ‘trio’ where he played guitar for a ‘blonde bombshell’ and traveled. But he always came back to his wife.

He gushed over her like they were newlyweds. Gushed.

Then his wife came over and motioned for me to move my purse. She too used her cane. Of course I couldn’t help but think of my own cane, sitting unused in my car. Thankful it’s unused right now….I obliged and picked up my bag and moved it to the ground so she could take the seat next to me.

As she took the seat her husband immediately told her I did not, in fact, make the scarf I was wearing and that I was, originally from Detroit and that my husband and I had Italian food for Valentine’s Day.

But why was I there? In the doctor’s office?

I didn’t want to tell them.

For some reason it just didn’t feel right to tell them I was there because I’m always there. Because this is my life.

I told them I was having stitches removed. And it was as if the wife knew I was lying to her.

She patted my thigh and said ‘we all have our crosses to bear, don’t we dear?’

And I cried.

Right there in the doctor’s waiting room I cried with two strangers.

Luckily I held it together and it wasn’t an ugly cry. And wise beyond their years this couple just kept talking, as if my tears were as normal as the conversation they had decided to just carry on with a woman they didn’t know in the middle of a doctor’s waiting room.

They made me laugh.

Every time the husband would compliment or gush over his wife, she would roll her eyes and say something like ‘oh, he’s just making up for all the trouble he causes’ and playfully smacked him with her cane. It was a good smack too. You could tell she had done it a million times before.

Then, as if reality emerged loudly with the opening of a door and the BOOMING nurse’s voice ERIN VEST… ERIN VEST…the door opened, they called my name, and the couple stood up with me. The 85-year old woman handed me my purse, when I should have been helping her with her cane. As they headed to the door the husband said ‘Now you know that she is all that matters…’

…and the wife looked back and me and rolled her eyes one more time and shook her head.

I was thankful to have met them today. 62-years of marriage and they were playful and loving and clearly taking care of one another. They gave me such hope.

They reminded me of why we hold that Valentine to our chest and let our heart beat fast and why we dare to dream.

I also now know what to do with that cane of mine…currently and thankfully collecting dust in the back of my car. I will just save it for years from now, because apparently it will come in very, very handy later on when I can’t lean over as quickly or reach as far to give my husband a swift tap when needed.

Filed Under: #SUCKITLupus, Auto-Immune Menu, Feeling YaYa, Kaiser, Men and their duckcamps, Stepford Crazies

The Chicken Came Before the Egg

January 8, 2013 by Queen of Spain 7 Comments

I’ve been spending many days and nights around here researching ways to get this body of mine back into tip-top shape…and I’ve come to only one answer in defeating Lupus:

Chickens.

Somewhere in Santa Monica, at a nice desk near the ocean, my husband just laid his sweet head down on his keyboard and is wondering when the sweet relief of death will come save him from this life of marriage to this crazy lady.

Now hear me out just a minute or three here. Or go read something else, I don’t really care.

I want the best possible food to go into the bodies of the people who live in this house. Heck, even those of you that just visit. Eggs are a great source of protein- which the doctor says I need A LOT of. The doctor also wants to see almost NO processed food, no chemicals, no dyes, no … well, nothing.

Now, shopping organic and finding recipes and all that fun grocery love is all well and good. But it sure is missing that certain…JAZZ HANDS quality. The one that makes me want to leap out of bed (and mark these words- I WILL LEAP OUT OF BED SOMEDAY) and get a great and healthy breakfast going for the family and myself. You know, after I have already worked out during sunrise and walked the dog and packed lunches and sat quietly with my tea and book, awaiting the husband and children to come downstairs from their slumber.

Yes, THAT Is how I plan on starting my life over once my body cooperates. Early morning exercise! Nothing but fresh, home cooked food! Total organization!

And where does it all start? The chicken, or the egg?

THE CHICKEN OF COURSE!

Which means I want a chicken coop and chickens. But I’d like the magical kind that get along with my dog as though they are best friends and have zero nasty stink …oh, and clean up after themselves.

See…I already have the cute ranch hand:

So really I would just like cute, fluffy, egg producers in my yard that cause zero issues and require zero care. OH…and the home owner’s association won’t mind or notice.

My daughter would be so so so happy if we got chickens. My son will freak out initially but only for about two minutes. Then he will freak out about all the other animals around who might hurt the chickens and then we’ll have to fortify the chicken coop with military grade fencing. But THEN it will be ok.

The point is. I want fresh eggs. I want fresh air. I want clean water. I want food that does not come out of a box. I want the chemicals OUT of the systems of my family (and your family’s systems too) and I want us all to live like we were meant to live: naturally.

Well, naturally within reason. I still need some take-out here and there and a good mani/pedi.

I’m not saying let’s start a commune in my very tiny backyard or anything (although that’s another idea I have for when this whole chicken thing doesn’t pan out) I’m just saying I think half of the reason my body is not fighting as hard as I want it to fight against this disease is a lifetime of food-flavored food being shoveled into my system. No really…FOOD-FLAVORED FOOD instead of fruits and veggies and meat that has no FAKE ingredients hidden inside.

We’re trying things out over here. It’s not easy. We like our junk food and we like our packaged food – but we are working on buying the cans of veggies with organic stuff inside and totally LESS sodium and with NONE of the things on the label we can’t pronounce. Or that Count Waffles CAN pronounce but he heard it on ‘How the Universe Works.’

Back to the chickens.

Who wants to buy me a chicken coop, chickens, and then come take care of them for me? I just want to pet them and eat their eggs.

Also…if the HOA asks, we got a TENT and that noise is simply our silly dog Nicky doing his new IMPRESSION of a chicken. We’re training him to be a Hollywood dog.

Totally plausible. We live in LA.

Filed Under: #SUCKITLupus, Hippo Diet, Kaiser, kill me now, Stepford Crazies

He is 40

December 9, 2012 by Queen of Spain 2 Comments

This is one of those blog posts I’ve stopped and started at least a dozen times.

I was sappy at first. But that just didn’t seem right. I mean…have you met my husband? When I get sappy, he just teases me more.

I was making ‘old man’ and ‘over-the-hill’ jokes. But that wasn’t right either. The guy just had shoulder surgery for the second time. And while the ‘old’ jokes can be funny, I’m going to save my roast for his 50th.

I even considered the video blog, so I could just blab and blab and yap yap yap…but let’s face it, my husband gets that from me daily. And it’s the man’s BIRTHDAY. The least I could do is give him a tiny bit of silence.

So in the end I thought I’d give him a post and virtual birthday card HE would enjoy: short, simple, and to the point.

Ahem.

Ok.

Here I go:

40 looks damn good on you, love.

May this decade be full of happiness, less stress, and you enjoying every moment.

You deserve it.

Happy Birthday.

Now, just to annoy him, everyone run on over to his Facebook and Twitter feed and wish him a happy 40th. Because nothing says ‘love’ and ‘birthday’ like internet friends and family and co-workers bombarding you with messages via social media.

Filed Under: Feeling YaYa, Kaiser, Stepford Crazies

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