2012 January

Royal Pains

January 30, 2012 by Queen of Spain 11 Comments

I’m going to die like Elvis.

No really.

That’s how this is all going to go down. So to speak.

I’m finally peeking my head up here on my blog after a week of being ‘sick’ – which is different from my usual ‘sick’ where in I just take all my medications and trudge through life hoping things get better with every lab test. This week we decided to add ‘gastro’ issues where phrases we haven’t used since the kids were in diapers like ‘Aww, she made it through the night without pooping her pants!’ were busted out.

Oh don’t look at me like that, you’ve read this blog before. You are not shocked or surprised I went there.

So I’m now on day EIGHT of said issues and I have another round of IVIG treatment going in me as I type (one-handed). I’m just glad I made it. I’ve been sleeping in the bathroom for over a week so you just never know what state they’ll find me in come morning.

All kidding aside, this is just one more of those things someone with a chronic illness has to deal with. You see, we don’t even get sick like a normal person. Nope. It’s just not that easy. If you have an auto-immune disorder, like I do, you get the same colds and flues as everyone else, but you get nailed.

That is, if what we’re dealing with here is viral. The doctors think it might be. But, that’s another story. (helllllo it started with my increased chemo shot).

But back to my point: as a family with kids you can imagine the germs that go around this house. Which means when someone gets the sniffles, I get pneumonia. When someone gets a 24-hour stomach bug, I get an eight days and counting ‘bug’ that will probably land me in the hospital on bowel rest…I’m just guessing.

To say that I’m frustrated is probably an understatement but I’m trying to keep it in check. We had just gotten word from the doctor that my labs were starting to improve. I was just getting comfortable with the idea of my limitations, and finding ways to work around those limitations. Sure I had been put back on daily steroids, but I had also been given permission to diet. I actually had TWO WEEKS OFF between treatment rounds and was really excited about it…until halfway through I was stricken by what we’ll call the Elvis disease.

The scarier scenario that I am doing my best to ignore – this is my body’s reaction to the increased methotrexate injection and in order to keep my inflammation down I need this dosage.

Hmmmmm, inflammation that gives me strokes, TIAs, kidney issues, liver issues, and potential continued organ loss and horrible, constant pain OR horrible and uncontrollable diarrhea and vomiting.

What to choose…what to choose…tough decisions.

Yup, I think going out like Elvis is my best bet.

He is a legend, after all. And the King.

Filed Under: #SUCKITLupus

Taking Inspiration From Congresswoman Gabrielle Giffords

January 23, 2012 by Queen of Spain 2 Comments

I can’t imagine what a violent act, such as suffered by Congresswoman Gabrielle Giffords, feels like. To have your life nearly taken, to battle back from against the odds, and then to work hard to try and ‘do’ your job.

I can imagine what it feels like to want to do your job, and be unable- because you have to focus on your health. To want to make a difference, change lives, and show people how politics can, in fact, work and give every citizen a voice.

Of all the work and hats I would wear at BlogHer, there was nothing I loved more than connecting women and elected officials. To put them on phone calls with the Speaker of the House and to introduce them to high-level White House advisors who would then invite them straight into the West Wing. Nothing made me feel like I was doing my job better, or working harder.

I have seen how powerful the connection can be between constituent and legislator and how it can bring about change. It can be civil. It can take away the nasty rhetoric and get us talking like a united country and it can empower average voters and humble powerful leaders.

I could have never of guessed my own recovery from Lupus would ever take this long. I wish Congresswoman Giffords patience as she focuses on her recovery, and speed. May she kick ass in getting healthy, because she inspires me to do the same.

I want to push myself harder so that when she returns to public office, I can return to connecting her with the millions of women with millions of ideas to change our country for the better…together.

I have watched, like much of the country, as her husband and family and friends have shown her so much love and support. We are two lucky women to have such great people surrounding us and cheering us on. More than once during my own dark, pain-filled times I have found myself thinking ‘What would Gabby Giffords do?’ Silly maybe, as we’ve never met…but she is someone I admire.

And as I wrestle with having to think ‘long term’ for my recovery, being out of work and focusing solely on getting healthy, I take a sort of solice knowing Congresswoman must focus on the same.

People tell me over and over and over again that I can’t take care of my children, change the world through my work, make a difference, unless I take care of myself first. It is an unnatural thing to do, at least for me. And even when I accept that this this truth, I have a hard time waiting for it all to happen. I do everything I am supposed to do, yet we have such a long way to go until I’m able to exercise let alone work. Small setbacks that feel like punches in the gut. Small strides forward I think I over exaggerate in order to feel better about just how long this process takes.

I know the feeling of gratefulness that comes with just being alive. When you realize what *could* have been and how lucky you feel to have those around you STILL around you. It changes you forever, violent act or devistating illness. Eventually you begin to put the fear aside and come crawling out of your new shell. More aware of what you have, more aware of what you could have lost, more aware of the little things in the once dull everyday that bring such joy that it’s almost too sugary, too mushy, too…too.

So it is with great respect I watch and listen and learn as Congresswoman Giffords resigns in order to recover. Perhpas, in a way, I feel validated in putting my health above my work and what I feel is a higher necessity to help our country in this time where pundits consist of who can be the most shocking, out of left field, lying, or downright evil.

But I get it. I get that tug of wanting to uphold responsiblities and take care of business. It may very well cause my Lupus to explode because I have to watch from the sidelines during Election 2012. Right now I want to be planning, laying my usual groundwork by ramping up apperences on news shows and speaking engagements. Making sure so many things are in place. I have no doubt coverage will be amazing but it won’t be how *I* would do it. Actually I have learned that nothing is how *I* would do it, from when I watch someone else cook dinner for my family to how I would get the kids out the door for school in the morning as I watch from the couch, too sick to participate.

Congresswoman Giffords I wish you much luck and love as you recover. I also hope that when you return to politics…when WE return to politics…the space isn’t as nasty, isn’t as volatile, and is ready for our way of creating change.

Filed Under: #SUCKITLupus, BlogHer, Feeling YaYa

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

Magic Hats Can Explain SOPA, PIPA, & Internet “Strikes”

January 18, 2012 by Queen of Spain 2 Comments

It seems only appropriate that on this day, a day of protest here in the wild World Wide Web, I showcase the hat sent to me by BlogHer CEO Lisa Stone:

Just the hat though, that’s all you get to see…as I’m reading and educating myself on a very important Internet issue- freedom.

I’m starting by reading up on the two bills headed through (or stalled, or being changed, or fill-in-the-blank-status as of now) Congress and then I will contact my representative.

As a pioneer in making sure women’s voices are heard online and throughout the world, Lisa Stone (or as we call her at work, Lisa FUCKING Stone) sent me this hat with love. But she also taught me to never pass up an opportunity to educate. So educate yourself today on WHY people are so upset and some of your favorite sites have gone dark.

Can’t figure out why Google has that big, black, block over it? Want it easily explained with laughter? Can’t figure out why everyone is unable to look up stuff on Wikipedia? Click. Learn. And then decide if you plan to do anything about any of it.

And enjoy Lisa’s hat.

Filed Under: BlogHer

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