2013

The Praying Atheist Child

May 23, 2013 by Queen of Spain 4 Comments

My son prayed once. It was five years ago and he feels terrible about it. So terrible he had to break down and confess to me last night about this horrible transgression:

I was five Mom. And I wanted Bolt to be real so bad. And I didn’t know what to do. So I got down on my knees and I did that thing they do with their hands so it’s like a triangle, but not really a triangle, but you know what I mean…and I said ‘Please God let Bolt be real and come to my house.’

And I feel so stupid. And I thought I had to tell you because it’s been bothering me all this time that I did it.

I had to hold in the giggle and take him very seriously.

Honey, sometimes I say prayers in my head that I learned when I was a kid just because I think I might as well do anything that could help. I doesn’t hurt. Even if we don’t believe in God.

And he turned and looked at me, ever wide-eyed, like I had told him my innermost secret.

But Mom, that’s so dumb. I’m sorry I said ‘dumb’ but it is. We know there is probably no God. And if there is a God it’s certainly not going to make a cartoon come alive or give you what you asked for- so praying is stupid.

I took a deep breath and tried to explain.

No, prayers may not change the outcome of something. But they might make you feel better. It’s like meditating. Or breathing deeply to calm yourself. Sometimes saying things over and over can calm you and then you feel better about the situation you are praying about.

A light bulb went off.

Oh, so really they are just making themselves feel better when they pray, even though they know there isn’t a God who will answer them. I get it. I just don’t understand talking to something that doesn’t exist. Don’t they put people on medicines and in the hospital for that?

I stifled the giggles again.

Yes, they do. But for some reason our society thinks it’s normal and acceptable to believe in God. So they don’t think believing in God requires medicine or a stay in the hospital.

Well that’s dumb. Oh, I said ‘dumb’ again, I’m sorry Mom.

It’s ok honey. And it’s ok if you want to pray.

No! I only did it that ONE TIME because I was little and I wanted Bolt to come live with us. And I know there isn’t a God who is listening and even if aliens or something else is listening, they don’t care if we want Bolt to come alive and they should care about those people in Oklahoma but they didn’t care about them either. So that just means there is REALLY no one listening that can help us.

What do you think about that? Us being alone in the universe?

I think we have to help each other if we really want to get stuff done. Not pray. I mean I guess it’s ok if it makes you feel better, but you should do something for real too, not just talk to yourself and think something magical might happen. Because it won’t. You need to give them shoes and new houses. And you need to not be on your knees, because that is dumb. Oh, I did it again. I’m sorry Mom.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

I’d Like That Hollywood Ending Too

May 13, 2013 by Queen of Spain 9 Comments

I almost wish I had cancer instead of Lupus.

It’s one of the many reasons my family is going to Washington DC in June. Because unlike Angelina Jolie I can’t make a brave decision (which I applaud wholeheartedly) and then simply have only scars and memories left to show my children.

I know it’s a terrible thing to say…to wish I had a disease that kills the people I love and that kills so many. But it also can be defeated. It can be prevented. It has billions in research and deserves billions more. And yes, there is a sick part of me that wishes I had to fight cancer and were given that fighting chance so I could kick its ass and then move on with my life, or lose my battle with dignity.

Instead I have a chronic illness. Like cancer it has no cure. Unlike cancer, it can not be defeated…it can only be ‘controlled.’

1.5 million Americans suffers as I do…and those are just the ones who are diagnosed. Because Lupus affects a majority of women of color there is tremendous fear that many go undiagnosed and go without medication to help them function.

Without the pills and shots I take daily, and the infusions I get bi-weekly, there is no way I could function. So in a way, you can add ‘double mastectomy’ to the list of things on my Angelina Jolie jealousy list. What I wouldn’t give to go through several surgeries to be rid of this fear and pain and ache and disorder. I’m jealous I had no choice in losing my colon, gall bladder, ovaries, uterus, cervix, or in the stroke I had thanks to Lupus. I’m jealous I can’t just have a surgery and a few rounds of chemo and radiation instead of my bi-weekly rounds and the constant fear of another organ in danger just around the corner.

I know it’s not fair to compare diseases. Or to play the ‘who has it worse’ game. I know, compared to so many, I would lose hands down. But I can’t help wishing I could knock the crap out of the ‘chronic’ part of auto-immune disorders and fight a brave fight and then move ON. Just let me win or lose already. Just let there be a finish line.

Lawmakers need to know Lupus isn’t like many of the illnesses people lobby for when they come to the Hill. Sure, we need research money like any other. However, what I want Congress and the Administration to know is our fight never ends. The children always are in fear of when Mommy will go back to the hospital. The story Angelina Jolie told of her partner, Brad Pitt, being by her side and there even being jokes…believe me, after hospital stay #50000000 you are lucky if your hand is held between arrangements being made on who will take the kids to school and what can be made for dinner between doses of hard-core drugs from the nurse.

Marriages have crumbled under the strain of Lupus. Children require therapy because they have to learn to incorporate ‘Mom is always sick’ into their everyday lives. So much so that I hesitate to turn on the news tomorrow morning, knowing Ms. Jolie will be on every station here in Los Angeles and it will inevitably lead to my kids asking ‘can’t they just cut the Lupus out of you, Mom?’

And I will have to hide in the shower, again, to cry. And I will explain, again, that no… no… they can’t just get rid of Mom’s Lupus but they can keep it under control and no, no, it can’t just be cut out, but maybe someday they will come up with a drug or a vaccine or even a cure.

If we are lucky, they will come up with a cure for Lupus and cancer, then maybe no more children will have to ask their Mommies about scars and partners will always laugh while we patients can finally rest, knowing the fight is over.

I think that is the sort of Hollywood happy ending we can all get behind.

Friday is Put on Purple for Lupus Day. Do me a favor and wear purple. And thank you to everyone who donated to help get us to DC. I’m happy to report we’ve purchased our plane tickets. We will do all we can to represent you proudly.

Filed Under: #SUCKITLupus, Auto-Immune Menu

Superhero: Hala and Malala

May 8, 2013 by Queen of Spain 13 Comments

Today my eight-year old daughter astounded me, and many others, by presenting the story of Malala Yousafzai to her class.

She spoke of Malala’s fight to make sure all girls receive an education while noting she was lucky to be in school, talking about Malala.

She spoke of the men who tried to kill Malala for wanting girls to be educated and when parents and students reacted, she told them “can you believe she is still alive and STILL fighting to make sure girls can go to school?”

And she told parents, who had never heard the story, that Malala was her superhero and she hopes she can be that brave someday.

2nd graders and their parents asked me, as I stood nearby listening, “how did she know who this was?” and without missing a beat my daughter interrupted the adults,

“I heard it on the news and my Mom told me some, but mostly I saw it on tv.”

Making sure the adults in the room knew I wasn’t the one who pushed her into choosing Malala. In fact, I had offered up many names from Dr. Martin Luther King, Jr. to President Obama. As soon as we discussed Malala, my little one knew exactly who she was doing her research on for her superhero project.

It made me realize, as a blogger, that this big, big world isn’t so big after all. Malala began her claim to fame as a blogger for the BBC and from there my very own daughter learned about her struggles and battle back from the brink of death without fear. It didn’t scare her that this amazing young woman was nearly killed for standing up for what she believes, it pushed her to think about what SHE believes in enough to be shot for.

There have been no nightmares, no questions about bad guys in the Taliban. Simply the fight between good, evil and where girls and women stand in the world.

Like many around the world I want to thank Malala for her bravery and for inspiring an entire generation of young girls who are unafraid to follow in her footsteps to do what is right, no matter the cost.

Filed Under: By Order of the Charter, Feeling YaYa, Princess Peanut

Lupus Awareness Month. You Want a KickOff Post? You Got One

May 5, 2013 by Queen of Spain 4 Comments

It hits me at the oddest times. Not ever when there is an IV in my arm or when I’m talking to a therapist…but like, just now…when I see the photo of a beautiful newborn.

And this heaviness crushes my chest and my heart begins to pound a bit faster and I feel that ache.

That ache for all those things I wanted yesterday (read: NOW) that I must wait for. For all those things I will never have. For all those things that must change because life has dealt me a hand I’m not sure how to play.

I dream about secretly saving money to take the family away on a surprise cruise. And realize I have to schedule it around treatment and make sure it’s well after that one drug I get because that drug means I catch every germ on earth and I can’t be out in public and I have to make sure … you get the idea. And my dream fades.

I dream about going back to work after having an inspiration for a project as I finished reading up on some social media political ideas and begin to plan how to approach my boss and exactly who I would want on my team. And then I remember I need to be stable between treatments for a good length of time and stop getting all these infections and setbacks, even if they are small. I remember I’ll need to ramp up to balancing work and health and life while I currently have enough trouble just balancing health and life. And my dream fades.

I dream about my honeymoon over and over.

I dream about nights out with girlfriends where we dance and I need to take a cab home.

I dream about meeting my husband for dinner with friends across town. Or by the beach. Or with his co-workers. Such simple things he does all the time with many people.

I dream about running in the park with my children, laughing. I dream about volunteering in their classes.

And then I remember I shouldn’t be out in the sun long, due to the medication. I remember I can’t run, really. I remember the germs in the classes could land me hospitalized.

The ache returns. Harder. Stronger.

I want it so bad. I have been working so hard. I take my pills, I sit with that damn IV in my arm as they infuse whatever they infuse into me day after day, week after week, month after month. I try yoga. I try the diet that is supposed to help with the steroid weight gain. I barely eat now but I’m still a prednisone oompa loompa. I have done everything the doctor’s say and yes, I’m getting better but at what cost? I know there is light at the end of this tunnel, or so they tell me…but I still can’t see it because despite FEELING better there is too much still missing.

On the days I feel good I do all I can- I have gone back to school (online only as I can’t sit in a classroom yet), I drive carpool, I make dinner and breakfast and lunches and I do the best I can with housekeeping. I’ve been trying different things, doctor approved, to help my body and mind from horseback riding with my daughter to gentle yoga to just walking the dog.

I feel like I am trying so hard some days I’m creating stress by being so very determined. Mostly because I can’t stand to feel that ache. I don’t want to feel that ache. I want that ache to go the hell away and understand there is now a new normal around and this is just how it is going to be.

Only better. Because it will keep getting better. I have come this far and I will keep going. It’s slow. It’s painfully slow. But it is happening come hell or high water because it will get better than this. THIS is the new normal for now and it will continue to morph until I am happy with my life.

Yes, I have much for which to be grateful. And believe me, every single day I celebrate. Every. Single. Day. I am happy and laughing when I open a jar without pain. I have cried when I climbed the flight of stairs to our bedroom to realize I wasn’t out of breath. I’m patting myself on the back for every ‘A’ I get in class and for every treatment week I make it through without sleeping the entire time.

All I want is someone to hold my hand and tell me this is going to pay off.

This is life with Lupus.

Learn more about Lupus at Lupus.org

Filed Under: #suckit, #SUCKITLupus, Auto-Immune Menu

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