Stepford Crazies

Getting the Heck Out of Dodge

June 18, 2012 by Queen of Spain 1 Comment

It’s been a long stretch of treatment and school and work and treatment and school and work around here. The stress remains through the roof and we needed just a little something to get us through the next few months of treatment and work and summer vacation.

So we packed up the car and drove north a few hours and found ourselves in the middle of Sequoia National Park. We unplugged and tried our best to unwind.

There was fishing and river rock climbing and game playing and s’more making. All the things you need.

And all done together.

And, of course, there were things I couldn’t do because I’m not able. But it didn’t diminish the fun or make me sad. I was happy to be out, even if that meant in the car with the dog while the kids and Aaron took a hike in the forest.

Which makes it all the more unfair that *I* was the one who came home and found a tick in my scalp.

At least we have the memories of these beautiful trees while I visit the doctor tomorrow to make sure my already compromised immune system didn’t suffer a blow from that damn bug.

Next time maybe we just need to stick to Disney. 😉 Or at least remember the bug spray.

Next week it’s back to treatment for me, as I push to get healthy enough to be able to do more things the next time we go somewhere. I may not have a totally normal life, but it will never be dull….and I will never suppress my wanderlust for Lupus.

Lupus will just have to learn to like to new places.

Filed Under: #SUCKITLupus, Feeling YaYa, St. Nicholas Hoots Toots McGee Vest, Stepford Crazies

March Madness

March 27, 2012 by Queen of Spain 3 Comments

My husband and I not only share the same name, but we also share very close birthdays. Granted he’s two years older than I am, so he will always be my old man…but since meeting nearly two decades ago we’ve usually combined our birthday fun.

As fate would have it, our children are also two years apart in age and share very close birthdays. Luckily they still are the best of friends and want their birthdays to be celebrated together. So on an unsuspecting weekend day in March we have tended to unleash hoards of boys and girls upon our home and cul de sac where giggling and squealing can be heard from blocks away. Being unable to leave anyone out, and always justifying to myself it is the nice thing to do, we have invited each child’s entire class to join us for the fun.

Yes, I am stupid.

Yes, I know. I know.

But regardless of when that chaos-filled Saturday or Sunday has fallen on the calendar, I have always found myself a little bit more sensitive during those six days between when my eldest turns a year older and my youngest turns a year older. Spending those days thinking about when I was pregnant, when we brought each of them home from the hospital…you get the idea.

Having had our double-birthday insanity this past weekend, where it seems both of my children were exposed to the puking flu, my kids are home, snuggling in bed with me despite having grown older and more independent in just the past few days.

My son having just turned nine on Saturday, my daughter getting ready to turn seven on Friday…and here we are cuddling as though time is standing still on a Tuesday night. Tucked away in our bed, legs and arms tangled between towels and wet wash cloths, stuffed animals and nerf guns.

Both of them want me. Both of them need me. Both of them are stuck to me like velcro as they battle a bug and beg their Mamma to rub their back or lay ‘just a little closer’ as they doze off clutching me with one hand and ice chips with another.

My six days of contemplation, where I get misty over where all the time went, and how they won’t need me soon, have turned into something entirely different this year. I couldn’t be wanted more. I couldn’t be needed more.

During one of my daughter’s puke sessions this morning she asked me to promise to always be there to help pull her hair back. As my son fell into a nap shortly after lunch he asked me who took care of all the kids who had to stay home from school sick if their Moms didn’t have Lupus.

Dads, grandparents, babysitters, uncles…all sorts of people.

I’m not glad you have Lupus Mom, but I’m glad you have it today because you are home with me when I’m sick.

The funny thing is…my Mom left Sunday night after having stayed awhile taking care of me. The past 18 months I can honestly say I want two people when I am sick ( in other words-all the time)- I want my husband and I want my Mom.

So as I spend the last few days thinking about how badly I want for these children of ours to stay children, for them to always need me and want me, I know deep down they won’t ever really stop needing their Mamma…just like I haven’t stopped needing mine.

Filed Under: #SUCKITLupus, Count Waffles, Feeling YaYa, Princess Peanut, Stepford Crazies

When A White Boy Wears A Hoodie

March 22, 2012 by Queen of Spain 53 Comments

My son wears a hoodie every single day to school. He covers his head faithfully and rarely hears friends say hello as we walk inside or adults saying good morning as he tends to be lost in his own world, muffled by the hoodie around his ears.

My son would do anything for his little sister and happily get her candy. He would even question any adult questioning him for no reason- as we have taught him to stand up for himself, speak out for what is right, and question authority. He would run from strangers. He would feel safe with a police officer.

I think.

My son, however, can do all of these things without fear. He is white. He ‘belongs’ in that suburb. He looks like every other white kid in the area and a ‘neighborhood watch captain’ would easily dismiss his walking down the street as a normal, every day occurrence. As would a police officer. As would the community.

As a white mother to a white son, I’ve never had to explain to him what he should and should not do when confronted by police. I’ve never had to talk with him about how the world views him or prayed he wouldn’t be next.

Yet we live in a world where people deny racial issues still exist. They do not even understand white privilege. They actively cry ‘reverse racism’ as if they are the victim. They even have the nerve to call those who fight for racial equality ‘race baiters,’ ‘racers’ and have attempted to spin and twist and re-write history as if THEY have lost out because Americans owned slaves and those slaves were oppressed for generations, after which they were then oppressed under Jim Crow and then under the institutionalized racism that continues to permeate our culture today.

Yet these NON ‘of color’ victims’ have started a very dangerous trend, a very risky trend, a very uninformed and downright stupid trend that has them looking like very scared white folk, realizing their hold over the majority-and power-is slipping.

You see, as ‘one of you’ I get to hear all about it from family and friends and neighbors and others who seem to think that just because I am white I ‘understand’ what they mean when they say ‘our neighborhood is changing’ and ‘that school has too many kids who don’t speak like our kids’ or ‘you know the high school only recruited him because he can play ball.’

Then there are the comments on blogs and national media calling the NAACP racist, the United Negro College Fund racist, and those who support our President racist because we have the nerve to notice these overwhelmingly white people are angry and saying things and doing things they would NEVER do if the man occupying the oval office were caucasian.

They say all these things while innocent children, carrying candy in a suburb, are shot for walking down the street while black. As Jackie Summers writes,

“This isn’t some fresh new hell; it’s torn open old wounds most would prefer to believe have healed.

The concept that you are suspicious.
The concept that you have to justify where you are and what you’re doing.
The concept that there are people who are so afraid of you, they feel they’re protecting themselves and others, by killing you, even if you’re unarmed.
The concept that those charged with law can show up, knowing exactly what happened, and choose not to uphold it.
The concept that it requires a national outrage to incite justice.
The concept that there are those who would vociferously defend the murderer out of one corner of their mouths, and accuse the murdered from the other.

For no other reason than the color of your skin.”

Yet if you were to read a Right Wing blog today, you would think THEY were the victim or horrible racial attacks. The last I checked, white children like mine, even in hoodies, even walking in a suburb with candy, were not being shot for walking while white.

It is far from time for the white, right-wing to drop this act of victimhood in the American stories of racial inequality. It is embarrassing. It is ignorant. It is offensive.

Trayvon is not the first black child to die, he will not be the last. We owe it to every child to move the discussion on race FORWARD. Forward means NOT back to eras that have long past and have long ago put an indelible mark of hatred and evil on our nation that some on the right seem to think have been made up for, erased, or should be at the very least whitewashed, refusing to feel guilt for something they had nothing to do with. I don’t feel guilt as a white liberal, I feel anger. I feel anger that some conservatives say they see no color, claim to operate on an even playing field, and refuse to even discuss racial implications in any debate for fear they will have to be honest with themselves, our history, and the glaringly obvious fact we have NOT come as far as we would like to think.

We owe it to children of color to know the world MY children have grown up knowing. Where they don’t need to be told that they have to make allowances for other people’s racism because …’That’s part of the burden of being black. We can be defiant and dead or smart and alive.”

It is time to change the conversation, and it starts with the adults. I have no right to send my son to school tomorrow morning in his hoodie without fear, when so many other mothers will be sending their sons off wondering if they will ever come home.

Filed Under: Count Waffles, Feeling YaYa, Royal Decree, Stepford Crazies

Sugar 2.0

January 20, 2012 by Queen of Spain 20 Comments

As I’ve done the speaking circuit for several years now on this whole social media thing I’ve always had my schpeil about it being my ‘virtual cup of sugar.’ You know, gone are the days where we borrow that cup of sugar from our neighbor and we talk kids and schools and life and we’ve moved that conversation and companionship online. I’ve found my ‘virtual’ cup of sugar in my blogging and social media communities. We still share the same friendship and advice and community-we just do it through our computers and smartphones and tablets and gaming systems.

After today though, I’ve realized the yearly (or sometimes less or sometimes more) face-to-face meet ups aren’t enough. I want my virtual cup of sugar to magically turn back into that real cup of sugar. And throw in some eggs I need for that cake I’m making too.

I want you all here.

I have seen it first hand with my illness: it does take a village. And while I LOVE that my village is available to me 24/7 with a click and a keystroke…it does not and has not replaced the need for actual kitchen table talks. For a long while I really thought it did. I truly thought this online community was what I had, and it was enough. It was all I needed.

I was wrong.

This week two of my friends came and just sat and chatted with me. I needed it. I needed just having girlfriends over to talk kids and life. Then my Mom called with news you expect parents to give after a certain age and I felt the tug of wishing they were closer so I could be there to help with doctor appointments and life. Then another ‘blog’ friend shared her trials and tribulations while she goes through a divorce and again I felt that tug of wishing she were next door, so I could walk over with tea and a pie and we could grab forks and talk and eat straight from the tin as we gabbed the night and fears away.

I love social media for this wonderful and robust community it has given me. Friends I never would have, people I never would know, true companions that have touched and helped my family in our time of need. But I also hate social media for giving me this ache in the pit of my stomach as I have become so invested in their lives and knowing so much more than I might without it- forcing me to care and love and give and curse the distance between us all.

We joke that we’d start our own commune, just so we could all be near. But even if we were, would we stay inside or walk next door to share that pie and talk shop? Hell even my husband and I tweet each other from the same couch.

Think about that for a second. We tweet each other from the same couch.

Part of why we are what we are…this community of misfits and writers and oversharers and friends…does involve the safety of our screen and keyboards. I tell you more some days because I know I won’t bump into you as I drop my kids for school and I won’t hear about it from my Aunt’s friend’s hair dresser who heard from the plumber’s roofer’s golf buddy who told HIS wife. You know, the small town thing.

So I lament our long distance relationship but wonder if it is only possible because it is the way it is. I get to have you and you get to have me because we feel safe becoming friends and staying friends this way. We feel safe falling in love with one another and one another’s worlds because we only occasionally dip our toes into those worlds and even then it’s under the guise of vacation or dinner or a brief meet up.

However with Lupus now here to stay many of you have gone from dipping your toes into my world to crossing the entire foot and body over the threshold of my door. Your luggage in hand, leaving your shoes in our cubby and figuring out which kitchen cabinet holds the mugs for tea.

And I like it. No…I love it.

I want your visits to never end and I cherish the moments from the fleeting drive through towns, to the long weekends, to the week-long stays to help.

And I think to myself…we could pull off that commune. We really could. And my mind wonders and I worry if you’ll find the right bakery or the right library or if your animals would eventually get on my nerves or if you’d quickly tire of my ailments and medications and constant need for a ride to the doctor and back.

It is because of all this I find myself wondering if we’ve gotten in over our heads with social media. Far, far over our heads. And yes, I realize I’m saying this as a professional social media strategist.

I now have more close friends who have supported me in so many ways that I can’t even begin to thank them for the love they have given me and my family. And these are NOT fake friends. These are people who have slept in my home, picked me up from procedures where I was barely conscious. I needed help putting on my bra or I told you I looked terrible with a tube down my nose and throat. You’ve met me at my doctor’s office to hug me or to hand me gifts, homemade for me or my kids.

These are the people with whom you do not just share a virtual cup of sugar. You share the real thing, so much so that it spills over the measuring cup and makes your fingers sticky as you walk back up the drive to your own home.

Maybe that’s the answer right there though…just like everything in life, relationships are sticky. And the more real they get, the stickier they get.

Social media has just brought a bigger mess into our lives. A mess that which I, for one, am grateful. It has brought family closer together as the miles continue to push us apart. It has brought old friends back into the fold and new friends into our lives.

I guess we’re all still working on how we balance that virtual vs. next door. In every neighborhood there is always the busy body looking out her blinds too much, or the neighbor you avoid because you just know she’ll talk your ear off for an hour, or just one of your best friends who you really wanted to hug and help, knowing it didn’t matter how sticky, the mess was well worth it in the end.

And while I thank the medium for giving me this community, it’s time my cup of sugar got an update.

Filed Under: Feeling YaYa, Holding Court, Stepford Crazies

The POUT Face & Why I Must End It…NOW

January 17, 2012 by Queen of Spain 7 Comments

I really don’t know why I’m surprised. My six-year old daughter was pulling out her full on POUT face (see above) for $99 Prada frames at the eyedoctor…even though her vision was deemed 20/20.

That’s right, she has zero need for glasses yet walked out of her exam having decided she needed a pair to go with ‘just some outfits’ and because several other little girls in her class had gotten glasses. Cue my very unoriginal ‘and if several other girls in your class decided to jump off a bridge…’ which then I immediately turned into a seemingly unoriginal rant about how she should have her own, independent style and it should have very little to do with eyewear. Doesn’t she want to be a trend setter?

But Mom these are dark pink and light pink, no one has those.

Doesn’t she want to show off her pretty face and her great vision?

But Mom, did you see the little diamonds on the side?

We can find OTHER non-prescription glasses at another store much cheaper if you really want a pair to just ‘wear.’

But Mom, I want THESE and this is the EYEGLASSES STORE. I don’t want to get my GLASSES from the grocery store.

Ok that one I’ll give her, and maybe the diamonds thing (they were cute) but I’m not buying a ONE HUNDRED DOLLAR pair of GLASSES (Prada or no Prada label) just so she can maybe wear them to school a few times, get bored with them, and then put them on her American Girl doll with whom she is now, also, bored.

This is my fault. I know. I deserve this, don’t I?

My Mother is snickering in Florida somewhere reading this.

We can have this argument when she’s 16. But not SIX. Which is stupid for me to say because we’re having it and she’s six, so let me just say this argument will make more sense at 16. So I’m cutting it OFF at six.

Or trying to.

Oh who am I kidding. I’m screwed.

I’ll just hand over the $100 now and call it a day. And then throw in a goose that lays golden eggs and rename her Veruca.

And don’t tell her that her Mother got the Versace frames. Oh screw it, tell her. I AM THE MOM AND I CAN GET WHAT I WANT.

No really, don’t tell her. I’m tired.

Filed Under: kill me now, Princess Peanut, Royally Screwed, Stepford Crazies

Magic Hats – The Ridiculous Collection

January 11, 2012 by Queen of Spain 8 Comments

There have been hats that have come to my door stitched with love and care.

There have been hats that have come to my door with cards attached that have made me weep.

And then there have been hats that have come to my door that had me laughing so hard, I nearly wet my pants.

Ladies and gentlemen…I give you two of the most ridiculous hats to grace my doorstep:

In case I ever turn Republican, or a Ted Nugent fan, or decide I want to finally watch the whole ‘Wolverine!’ crap ass movie my husband and every other American male loves so much…this hat is for YOU. Yes, my good friend, and college floormate Karie sent this beauty from Arizona. Not only is it camo, but it also has not one but TWO flashlights to keep me shining brightly in the dark. But I’ve saved the best part for last…Karie had the had stitched to say “suckit lupis” …. snort. Yes. Lupis. Which is actually appropriate because Lupus is entirely pissy and makes me pissed.

Speaking of piss…

Tanis aka the Redneck Mommy sent me a doozy. A real, totally authentic Toque from the Great White North. Yes…Canada.

Of course the problem being she sent me some dumb ass team from up there…they had some dumb ass guy that was pretty popular with Canadians for a while. But what do they know, they like Nickleback and Justin Bieber.

So, in true ‘I’m from Detroit and the rest of you can bite me’ form, I took this:

That’s right…the Octopus is EATING the Toque. Ahhhh, I feel better.

For more about the Magic Hat project, started by my loving husband and pushed entirely out of control by YOU, click here.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

The Red Dress and Its Siren Song

January 10, 2012 by Queen of Spain 62 Comments

You might know the story. You might not.

Sometimes things happen inside the blogosphere that stay there…and sometimes they break free of their Internet chains and spread across globe in other forms from newspapers held with your hands, to tv news to even a story your Mom told your Aunt who told your Cousin and didn’t you know?

The Red Dress is one of those stories. You may have read about from the woman who started it all, my friend Jenny, otherwise known as the Bloggess. You may have seen it on Forbes this week. You may have heard rumors about it from your friend’s mom’s hairdresser’s nail girl who heard it from her aunt.

I can tell you the Red Dress is real. The Red Dress is powerful. But most importantly…

…the Red Dress is sitting in a box in my bedroom taunting me.

Yes. I have it. The original Red Dress. It just left the hands of my friend Kelly, otherwise known as MochaMomma. The box has Jenny’s addy on and Kelly’s addy on it and it looks like it’s been through many hands before it made it’s way to my house in California.

Everyone has looked fabulous in this dress and it has given them a feeling of …well…whatever it is they needed. Accomplishment, be it getting over their fear of dressing up so boldly, or showing the world their scars. Pride, after having gone through something challenging and conquered their mountain. Even love, having finally learned to accept who they are and who they want to become.

And now it sits here with me, and I can’t get myself to even put it on. My mind is so out of sorts, having heard my doctor fill out disability papers calling me incapable of so many things.

Unable to participate in cognitive thinking for long periods of time

Unable to travel by plane, train, boat, car, or bus

Unable to stand for more than one hour

Unable to sit for more than one hour

Unable

I know I’m having issues with my memory and mind. Every time I speak to my husband it’s clear the inflammation is high and it’s targeting my brain. I don’t remember things that are so simple, and it’s a wonder he doesn’t get more frustrated with me. I get so frustrated with myself I want to tear my hair out.

I’m not sure there is any worse torture than your brain not working right…except for maybe the damage done to my body by the disorder and the many medications and treatments used to keep it in check.

My mind is not my own. My body is not my own. I’m some absent-minded, fat, moon-faced stranger occupying the body of a woman who had the world in the palm of her hand, and feels all of it slipping away piece by piece. Now I’m squeezing everything so tight in that hand I’m suffocating what’s inside.

So the Red Dress has been sitting in the box taunting me since well before the holidays. I had a million excuses to not open it and leave it shut. Then I had a million more to just open it but not take the dress out. And tonight, dress in my hand, I ran my fingers over the gold stitching. I ran my fingers of its lavish poofs and strapless top. I wondered how I’d ever fit inside, and if being unable to close the clasps would destroy me even further.

I want to believe in this dress. I am a huge fan and freak of superstition and the power of the dress is right up my alley. Thus my request to Kelly and her permission from Jenny and now my big, fat, chickening out feelings as it sits here.

I’m not one to back down from a challenge. But my God there have been so many lately I didn’t expect one from a dress.

Yet there it sits.

If there is one thing I have learned in my many years of blogging, it’s that these women (and men) will not let me down. We might bicker over issues and we might disagree on which way our community should go and ebb and flow…but when push comes to shove we have each other’s backs. So I know that if they all say believe, I will believe. They wouldn’t lie to me.

Soon I will put on the original Red Dress. I will hire someone to make what is left of my hair look thick and I will hire someone else to paint my face and I will hire a photographer to do his or her best.

And I will stand proudly and feel the magic flow through me. If not from the dress, but from the women it represents, and their strength and power and passion.

You. You will help me do it. And for you I will do it. Not looking like myself and not feeling in my right mind and not the me I want you to see-but someone how, for you, the real me will hopefully shine through.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Of Dogs & GOP Compassion

January 8, 2012 by Queen of Spain 14 Comments

It’s no secret I’m not a fan of any of the GOP candidates for president and I will be working hard to re-elect President Obama. But there is something really, really bothering me about Mitt Romney, and I can’t shake it from my head.

I heard it as a rumor at first, dismissing it like I dismiss so many things during election season…but then it came into the main stream media: Romney strapped his Irish Setter to the roof of his car in 1983 and drove all the way to Canada on a family trip. Seamus was so scared he pooped out of fear.

I realize we all treat dogs differently in our very different families. Some are used for hunting. Others are always kept outside. But in my family, the dogs are PART of the family. They sleep in our beds and eat our food and certainly ride INSIDE the car when going somewhere. I know some state’s have laws about strapping your dogs to the back bed of your pickup truck. I know some people think these are ‘just animals’ that can handle the outdoors or whatever…but Romney put the family dog ON THE ROOF OF HIS CAR AND DROVE AND DROVE even telling his kids they were stopping for gas and that was it.

Apparently I’m supposed to feel better Romney built a ‘windshield’ so Seamus wasn’t smacked by the 65 mile an hour drive winds. Apparently I’m supposed to feel better that this compassionate family man didn’t really give a crap that his dog was in a carrier, on the top of the family station wagon, while the family was warm and cozy inside the car.

Any man like that has told me more about his character in one family vacation, than I ever need to know. Forget telling me about his policy, his stance on issues, his ability to govern. He’s the kind of man who thinks so much of the family dog to make the Irish Setter luggage on top of his roof rack. His dog was nothing more than LUGGAGE.

Yeah. He’s that kind of guy.

As a mother who cares about family matters like health care, education, family leave, etc. I am happy to get into it issue by issue, candidate by candidate…however Romney’s family man bravado and fatherly decisions tell me more about him than any debate, campaign slogan, or press release ever will.

He’s that Dad, and there is no way I want him in the White House or any other house in my neighborhood or country.

Our family dog Nicky…who I would bet wouldn’t be allowed in Mitt’s couch like he is on ours.

I hope Nicky’s type of dog life is way more common than Seamus’. Because any family pet deserves better than being treated as luggage by the patriarch who is clearly lacking a heart…and possibly any common sense.

Filed Under: #suckit, Obama2012, Stepford Crazies