Queen of Spain

The Vest Family Needs Your Help- As Do 1.5 Million Others

April 22, 2013 by Queen of Spain 7 Comments

It was just after BlogHer ’09 when I had to stay in my room and invite people over because going out was too hard, and I landed in the hospital for the first time due to Lupus.

It was scary. We didn’t know what was wrong. And it took three surgeries, the loss of most of my colon, my entire gall bladder, my uterus, both ovaries, my cervix, and a stroke before we realized we were dealing with an auto-immune disorder. A really nasty auto-immune disorder called Lupus.

I weighed about 119lbs back then. The doctors piled on the medication. My children were so scared. My husband is still scared. I remain on steroids to keep the inflammation from attacking my organs and every few months I battle something new. Not too long ago it was vasculitis. Just a few weeks ago it was a kidney infection. Lupus does not give up, but as luck would have it…I don’t give up either.

Which is why I need your help. Chronic illness (Lupus is one of many) changes your life forever. It means your family has to adapt. It means your body takes pill after pill after pill. It means the UBER-dose of steroids my first doctor put me on now has me in plus sized clothing and I am much more uncomfortable carrying extra weight and all the pain that comes with this disease.

But I am just ONE of the estimated 1.5 million Americans dealing with Lupus. And I have it easy. No, I can’t work (yet) but I can travel and get my kids back and forth to school. I’m well enough to drive myself to IV infusion treatment. And most of the time I can even cook dinner and do a bit of laundry. It’s not a ton, but it’s more than many with this auto-immune disorder can manage. Some of us can’t get out of bed. There have been plenty of times that someone was me. You see, you never know when it might be a good day or a bad day. And that means my husband has had to do everything around here, plus work a full day, and even clean up after I’ve been sick because I can barely lift my head off the pillow.

But now there is something I can do about it. I can help others and I can help my family, but I need you to help me get there.

I want our nation’s lawmakers, the ones with the power to divert funds for research, to know what it’s like to be someone with an auto-immune disorder. I want them to meet my family, and to hear first hand from my children what happens when Mom can’t drive carpool, or make their lunches, or go on their field trip, or volunteer in their classes, or even help them take a bath…all because she’s sick. And I especially want them to hear from my husband, my caretaker, what it’s like to shoulder the responsibility of an entire household and then some when normal families just worry about getting back and forth to work and asking ‘what’s for dinner’ when the day is done.

June 24th and 25th is Lupus Advocacy Day in Washington DC and the Vest family has some important people to talk to…but we need help getting there. We’ve got awesome friends who have opened their home so we have a place to stay, we just need a few airline tickets.

If you could find it in your heart to donate just a few dollars to help us get to DC, I promise you we’ll do you proud. I can’t tell you everything that we have planned just yet, I can only say Aaron and the kids and I will be telling our story to some important people who really can make a difference in the lives of millions.

Help us get there. Help us make a difference. Help us give a voice to all those families who struggle day-in and day-out with this horrible disorder and all the things it does to screw up the lives of so many.

Thank you.

Erin, Aaron, Jack, and Hala

Filed Under: #SUCKITLupus, Auto-Immune Menu

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

“Lean In”…a little closer…a little closer…

March 13, 2013 by Queen of Spain 10 Comments

…SMACK!

I’m done with this ‘conversation.’ Because it’s not a true conversation. In order to have one of those, it has to go both ways. Not me being told what to do by women who have more opportunity and privilege coming out of their ears than I’ve had my entire life.

And I’m pretty damn privileged.

All women behave differently in their careers. Some are the quiet types that get things done behind the scenes. Some are the loud, brassy, take-control types that get in there and kick ass and kick it hard. Some women sit at the board room table arms folded and others take notes. Some sit at the head of the table and tell others what to do.

Some of these women have families. They may have waited until later in life, they may have had children young, they may be in the midst of having children in the middle of their careers.

Now lean in one more time so I can tell you a little secret…closer…closer…!SMACK!

Some women DO NOT HAVE A CHOICE IN ANY OF THIS.

They work because they MUST. They rely on daycare or family and friends to watch after their kids because it is the only option they can afford.

Their choices are not like my choices. They are certainly not like Sheryl Sandberg’s or Marissa Mayer. And when they MAKE those choices, if there is a choice to be made, they are scrutinized up, down, left, right sideways….you get the idea.

When is the last time a man was scrutinized for his decision to put career first? The last time a man put his family first I believed the words ‘forward thinking,’ ‘courageous,’ and ‘whatta guy’ were heard. Figures, right?

I think those men should lean in as well. Closer…a bit closer…just a little bit closer…!SMACK!

I’ve had it. You’d think anytime a man decided to actual parent he should get a medal. While anytime a woman decided to start a company and lean in to make sure her employees do what is best for the company while she misses a volunteer opp at the PTA she has committed a felony.

The bottom line is we can lean in, we can lean out and we will still lose. We can fight for flex work hours for PARENTS (not MOTHERS…PARENTS) and remote offices and all the things that make it easier to be a working parent in this country and yet there will STILL be arguments. Some will agree, some won’t. Some will lean in and some will lean out.

We’re all different. We all have different goals and different ways of working. Some of us want children, some of us don’t. Some of us want to run the company, some of us are content to get our paycheck and live a less demanding life.

So spare me your lean in bullshit. This has nothing to do with leaning in or where you work or if you parent like a PTA Boss or a drop-in nanny. What matters is YOU have the CHOICE. So many do not. So many have zero choices. They scrape by every day just trying to make enough money and just trying to spend enough time with their kids.

Let’s not worry so much about leaning in, I’m tired of it. I’m tired of the judging on who has leaned in, who should have leaned in, and who should have chosen to lean in and didn’t…that’s enough. ENOUGH. Because most do NOT HAVE THE CHOICE to lean in. They aren’t even at the table. So screw leaning in, let’s worry more about helping out, putting women in positions to make those choices and then standing by them, NOT judging them, when they do.

Filed Under: #suckit, Feeling YaYa, Stepford Crazies

Meow

March 12, 2013 by Queen of Spain 5 Comments

My daughter’s teacher approached my husband and I at a school function the other night and told us how much she just loves our little girl.

We beamed, as parents of awesome kids tend to do…

…and then the teacher told us, exactly, why she “just loves” her:

She’s still acts her age, you know? She doesn’t try to act seven going on 17 like the rest of my girls.

If you ask her something fun or silly, she will meow like a cat and scamper away or hop like a bunny.

She plays like little girls at this age should play. She’s still a little girl and I just love that…I wish they all were like that. They SHOULD be.

It was then I think we were even MORE proud.

It is not easy to keep our daughters from worrying about boys, clothing, or how they look in this day and age. I’m glad to know that my husband and I have survived keeping her some-what innocent for a tiny bit longer. I say that with her eighth birthday just around the corner.

What I would give for her kitty meowing days to last forever.

Filed Under: Feeling YaYa, 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