The Mom Nagging Machine

There was a time when ‘back to school’ meant nothing more than a new backpack and some crayons.

Today my daughter and I looked, and bought, some ‘undershirts’ as opposed to ‘training bras’ because she has reached that age where she needs to wear something under her sundresses and under her white t-shirts.

Her brother, blushing, rolled his eyes and turned around to try to ‘unsee’ the girl things we needed to accomplish while at the store. Being the pain I am, I explained to him this was a great learning experience about women and he needed to understand that his sister was growing up and she couldn’t be flashing the top half of her body to strangers.

Which always turns into silly time

After doing his best to squirm and avert his eyes from the display of training bras and bras for tweens, he actually agreed…

Well, boys look at those things. Yes Mom, I know, girls look too…you’re right, she needs to make sure she’s covered.

Hmmm…wait, Did he just call breasts ‘those things?’ And was this the message I wanted to send? That the women of the family had to cover themselves in order to be proper?

I stopped myself as we looked at undershirts and talked to them both as they again rolled their eyes and leaned against the cart.

It’s not that we want her to cover herself. We know being naked isn’t a big deal. And she’s beautiful. It’s just that in our society there are some people who will try to look at her inappropriately, just like we talk about private areas and who can see them and touch them…

Oh man, now I’m getting way off track. This is hard.

…and we’re just making sure her privates are covered as she wears certain things, that’s all.

This parenting stuff is ridiculous. I’m flunking this. Please God let this moment go away forever because right now it seems like nothing I say is right, or coming out right…or what I’m trying to convey. I’m just trying to buy her a few more undershirts, THAT IS ALL.

Then I glance up at the display in front of us. I hadn’t really studied it until now. Bras, training bras, what look like sports bras, undershirts. And then…what I swear to God are PADDED BRAS FOR LITTLE GIRLS.

My daughter is handing this like a champ.

Mom I already have that white one at home, so how about these pink and purple fun ones that are like half undershirts… and let’s go.

Sold.

My son can’t get out of there quick enough and leads us to semi-safety where we have to then pick out underwear. This seems like nothing compared to bra-hell.

But I can’t keep my mind from going back to what I am pretty sure I just saw. Padded bras.

The Judy Blume years of my life come rushing back.

I was never in need of KLeenex. I developed well before any of the other girls and I had plenty to go around. A blessing and a curse for a young girl. The boys ogled and feared me. The girls hated me. All because I had big boobs.

My daughter isn’t built anything like I was at that age. But with any hope she’ll be able to talk to me about body image issues she may come across and we can giggle over the difference of being one of the girls who could give herself a black eye in gym class or one of the girls who was flat as a pancake.

I want, so badly, to ask the kids if they saw the bras hanging there. What they thought about them. But I know the agony this will cause my son, who is working through his prepubescent feelings. And I know it will only cause my daughter to think about it MORE, and her body MORE…which I don’t really want her to do just yet.

Not because she shouldn’t explore what’s going on with her body, or question why she needs to cover her nipples or any of those things…but because there is so so so much time in a woman’s life to worry about what we look like. To think about our breasts, our noses, our asses. If I bring up the padded bras, that just gets her thinking about it all. And I really don’t want her going down that road. Especially when I seem so ill prepared to discuss and help her young mind through all the bullshit.

Sigh. I just wanted to buy some crayons. A pack or two of pencils.

Instead I feel like I had this perfect opportunity in front of me to teach both of my kids about respect, beauty, and body image…and I stumbled and stammered and wished one of my son’s inventions had become a reality.

He has this idea for a hook up between our brains, so I can automatically give him all my knowledge and he doesn’t have to listen to me explain or make guesses when I can’t seem to phrase things in a way he can grasp.

I think the idea actually came out of Mom Nagging, but whatever. I’d take it right now.

I’d even wear a padded bra on my head ala Weird Science. Although, there is no way my very embarrassed son would.

We might have to give that invention a few more years.

NYC’s Toll

I’ve been home from New York for nearly a week now…and I’m still recovering. Emotionally. Physically.

It was a much needed trip to add some normalcy to our otherwise ‘school, work, doctor’ routine. It was a much needed trip to remind me that I am more than my illness and I am capable of greatness even with this illness.

But most importantly, it reminded me of how far we’ve come.

This carefree couple that haphazardly ended up together in the oddest of ways, never fully believing what we were doing until we were so far in we couldn’t imagine life any other way. From the highest of highs to the lowest of lows and everything in between. I was content to just have some time in a quiet hotel room with my best friend, spending more than a few minutes without being interrupted by the need for more chocolate milk or help with a video game.

And then returning home with a thud, as most vacations do, to absent chauffeurs and delayed flights and kids in need of extra attention and cars breaking down and doctors delivering treatment and news of what a simple flight across the country does to my body.

But we did it. And we had fun. And I managed to remind myself OF myself while there. The self he fell in love with that I am fighting to bring back through all this bullshit piled on us. Just being capable of doing it helped me reach an arm out and break through- grabbing him and holding tight.

He’s still here. I’m still here.

NYC, I thank you, even if you battered me a bit. As my doctor said…’these numbers are nothing compared to the smile I see on your face. Next time I’ll send you for longer!’

My man of steel @aaronvest is taking me to the natural history museum via wheelchair 'cause he's badass with potholes in NYC

BlogHer 2012: In New York, There’s Nothing You Can’t Do

I will admit it: I’m a blog snob.

Those silly fashion blogs? Pfffft. So long as they don’t take over the political news of the day, or the REAL news (as I stand tall and like to remark) then fine, they can have a headline or two. But they aren’t important and are fluff and as far as I’m concerned have no place getting higher ratings or more coverage than what I consider to be more important- real news.

So when the BlogHer team asked me to be a model in the first EVER BlogHer fashion show this year at BlogHer ’12 in New York, I had to laugh.

Hard.

Not only was I being asked to participate in a space I had very little respect for, but I was struggling with coming to terms with a body that is not my own. One I have written about time and time again since I began steroid treatment for Lupus. The dramatic shift from my 119lbs self to my now steroid induced 219lbs self has been life changing. Nearly as life changing as the disease trying to kill me.

The truth of the matter is I have not felt beautiful, or even comfortable, in a long time. 18 months, to be exact. I’ve learned to shop in the plus sized section, and cry when things even there didn’t fit.

I sobbed uncontrollably when all I wanted to hear from those I love was “you are beautiful no matter what” – which was said early on but after so long that sort of talk seems frivolous. Ok so I haven’t heard it in 15 months, to be exact. Not because they don’t love me, but because it seems unimportant in the sea of things going on. Treatment, medication, plans of action. My appearance should be the least of anyone’s worries and it would be insulting to even bring it up. Vain maybe. And down right stupid.

But as it turns out, you notice and remember things when you don’t recognize the person looking back at you in the mirror. You crave to know you are still beautiful to those who love you, if not in words, than in a kiss on the forehead or an arm around the waist. But that waist is now double in size. The forehead round and moon shaped from the drugs, and I certainly wasn’t feeling worthy of a kiss.

That’s not the Erin I know. But I was cutting her some slack, considering the hell we were going through.

Everyone treats you differently as a big girl too. Everyone. My kids love “squishy” Mommy. In fact they want to make sure I don’t lose ALL the weight I have gained as I diet because they insist some squish remain for cuddle time.

Then I realized how the outside world treats larger people. They aren’t nearly as nice to me as they used to be. At first I was angry, I wanted to wear a big sign that said “I AM ON A STEROID THAT SAVED MY LIFE THIS IS WHY I AM FAT.” And then I got even more angry, realizing that no one deserves to be treated differently simply based on looks and size. From those of us here involuntarily to those beautiful women born with curves to people who just are who they are.

So I said yes to being a model. Because my self-esteem needed a boost, I knew I had to learn about other blog communities, and most importantly, I wanted to show the world every size, shape, and sass of a woman is beautiful.

But could I really do it? Could I walk a runway in front of hundreds in New York knowing full well I’d be in tears and hating the body I’m supposed to show off and love? Would it be a big lie?

No. No. I could do it. I just had to believe. I had to believe, I had to get comfortable in this body of mine, and I had to own who I am now. OWN IT.

So with that thought in my mind, and some nudging from some people reminding me that others like me might be inspired and get that “you are beautiful” comment they too have been waiting for…I said yes.

Flash forward to rehearsals, fittings, hair, make up, shape wear discussions, stretch mark discussions, bra discussions, heels or flats, order of models,  how to walk, how many beats to count before posing…and on and on and on.

And at every point I wanted to bail. To run out of this thing that put butterflies in my stomach. Would the community think this was lame? Would anyone believe I was beautiful and model worthy? Would they see all the hard work and diversity of women of every stripe and say “that is awesome” or would they say “where are the supermodels?”

And I stood on the steps off the stage, music blaring, and knew there was no turning back. I was told that if I could do it, maybe next year another woman afraid to show her cancer scars might say yes too. Maybe, just maybe, a blogger who feels like the ugly duckling due to a birth defect will volunteer and say “ME NEXT!”

And I closed my eyes, and I counted my beats, and I believed, for the first time in so long, that I truly was beautiful. I believed what I had always written and told my daughter- it’s not what is outside, it’s what is inside that makes you pretty. My inside has sass, and silly, and attitude, and  power. POWER enough to be winning against a disease that kills. Power enough to be humbled by the “fluff” bloggers who I realize not only work hard, but work super hard to show every woman is beautiful, fighting the stereotype that you need to be a tall, skinny, white, blonde female to be the ideal.

They taught me everyone is the ideal woman, and I most certainly was welcome in their ranks. Not everything needs news and politics, but everything DOES need beauty.

So for every woman who isn’t society’s usual cover girl… I stepped on stage, walked to my mark, and soaked in what I KNEW was already there: family and friends who love me for me. And who all taught me EVERYONE in this community and beyond has an equally important voice. Because that voice gave me the confidence to return to who I really am.

photo by @craftyb

And I am beautiful.

 

 

 

 

*With special thanks to 6pm, Elizabeth Arden, Paul Mitchell, Monif C , and Marc Jacobs. And the wonderful team at Zappos.com. Fashion show guru Kathryn Finney and her amazing team. Photo caught by Kelly Cheatle. See more at Blogher.com.

Forward

The kids cried last night as my husband and I put them to bed. Cried because they were tired. Cried because they are kids. But cried mostly because we were leaving, while they slept, for New York.

This will be our longest trip ever away from the children. And our first since everything in our home has changed. Life operates differently with Mom not working, and undergoing treatment for Lupus. Cuddles are a nighttime ritual. Therapy for worries, a new childhood experience.

I explained to the children how important this trip was for me, and for our family. It means that I am getting better. And this trip is a big step in testing to see what my body can handle…and what it can not.

While I am very excited to speaking at BlogHer ’12, to be staying longer in New York than planned so that I may be a guest on the new Katie Couric show, and to travel on a plane-cross country no less- I’m also very much feeling what my children were feeling last night…

Fear.

I’m pushing many of the what if’s out of my head because I know that my body is ready. My doctor is confident and he wouldn’t have let me travel if he weren’t. This doesn’t mean I can handle this often yet, or even that I will be anywhere near full strength soon. But this is a step. A big step. And one I had hoped would make the children feel more secure, make me feel more confident.

Instead this morning my hands shook as I tried to take my pills with a glass of water, and I nearly called off the entire thing before we walked out the door. And nearly called it off again as we drove to the airport.

Yet here I sit, on the plane, blogging from the sky and trying to muster the old Erin that usually emerges right about now.

I’m just so determined to beat this, so determined to NOT go backwards, so determined to never cause the kids or my husband another thought of fear or pain that even taking this trip has me rethinking everything I do. Everything I am. Everything I WANT to be.

I’ve been doing my best to take those baby steps at home, from home, that feel comfortable and natural and don’t disrupt the worries of the household. I’m so proud to have been asked to blog for the President’s re-election.

Screen Shot 2012-07-28 at 12.49.26 PM

And I’m proud to be doing more around the house, slowly, steadily, and with great care.

I just wish I could shake this weight in my chest over this trip and all it’s implications. So many fantastic opportunities, so many chances to relapse.

So if you see me in New York, and I’m not entirely myself, please don’t take any offense. I currently have a one track mind that includes keeping my voice and hands steady, my head held high, and a fierce determination to turn around and go home if my body says it’s time-regardless of what opportunities I miss.

The crying children I left behind, and the man who accompanies me and has stood by my side through this hell deserve that much. In fact, they deserve much more.

I’m in control, even through my tears, and I will NOT go backwards.

FORWARD.

What in the Hell does Health Care Have to do With the Olympic Opening Ceremonies?

Along with many millions of others we watched the Opening Ceremonies of the Olympics with our family last night.

I was struck to the point of near shock that among all the dancing and music and fun, the creators chose to showcase the NHS, of the UK as part of the Olympic celebrations.

It was at that moment, as the nurses danced around, I distinctly remembered one of my many hospital stays here in California. I was in horrible pain from my SLE and RA and the inflammation was running rampant throughout my body. The nurse has been buzzed to get me 2ml of dilaudid. A very powerful narcotic and usually my last resort when it feels my body just can’t take anymore.

Pikachu & #allhailhala had a pokeball accident this morning. Poor thing now has a sling

Another woman had walked in just before the nurse. She identified herself as someone with the hospital. A patient advocate and specialist in accounting, or some odd name she gave herself. She had explained to me our insurance company was in a fight with the hospital and they weren’t sure if they were going to need to transfer me or if they would have to keep me because the closest hospital not arguing with my insurance company did not have a bed for me.

Regardless, she needed money because of this fight, because who knows when they might get paid by my insurance carrier.

I was hurting so bad. I didn’t care. All I wanted was my nurse with the drugs. I just wanted relief. And I wanted this woman with the clipboard to get the hell out.

The nurse finally came in, drugs in hand, and saw the hospital administrator at my bedside. She began to retreat.

No. No. Please… it’s ok. Come in. Please. I need my pain medication. 

The nurse looked a the woman with the clipboard. Looked back at me. Looked back at the woman with the clipboard. I was begging her with my eyes to put the medication in the IV NOW and she could tell. She kindly, mercifully, walked to my port and began her work.

So did Cruella de Vil.

Mrs. Vest I can reach your purse for you if you’d like to write us a check.

Sweet relief kicks in almost instantaneously as the drugs make their way through my veins.

Mrs. Vest I’ve put your purse on your bed. Will this be check or card? 

I’m trying to think. I can’t think. I shouldn’t pay her now. While I’m high. I need to think.

Maybe you should come back? I really don’t want to switch hospitals, my children are only a mile away from here. They aren’t allowed at the other hospital and it’s so far away. 

And I begin to doze.

Mrs. Vest. I said will that be check or charge? 

Hmmm.. .oh. Check. I guess. Check? I’m writing a check?

Yes. Here is a pen.

I can stamp the hospital name on it so you don’t’ have to write that part out. 

And then I woke up. Hours later. It seems I had the presence of mind to tweet my experience while it was happening knowing it was wrong and horrible and I had a twitter stream full of people replying to me with things like ‘DO NOT GIVE THEM A CHECK ERIN’ and ‘DO NOT PAY THEM RIGHT NOW.’

But I did. I gave them a ton of money while drugged out of my mind.

In contrast, there was Great Britain, celebrating their safety net. Celebrating that no woman would ever badger a drugged patient for money while she moans in pain in one of their hospitals. Celebrating that no matter how poor, how disadvantaged, a sick person is never turned away.

Is it a perfect system? Heavens no. But it is common sense and decency and something they SHOULD be proud of across the pond. They SHOULD celebrate they are not out for profit when saving lives. They are simply out to save lives. To keep their citizens more healthy. Alive.

All the American system has done is take my money. At my weakest, it’s only wanted my checkbook. It has only leant a helping hand when forced via the Affordable Care Act aka Obamacare. That has been the ONLY change getting us closer to a realm of decency the British have already figured out.

There is a huge lesson to be taken away from the opening ceremonies:

Pride should be felt by a nation when they offer a healing hand to the sick. Shame should be felt by Americans who also seem to offer their hand, but only the palm-face up, waiting for it to be filled before they even consider the sick woman reaching up.

Learning to say YES

I have this fantastic habit of not telling you guys things that are REALLY IMPORTANT until I just randomly show up somewhere and say ‘TA DA!’ and squeeeeee and then unveil I have taken your questions to the leader of the free world or something like that.

I know it drives you insane, and makes you all swear at me…but usually you get pretty cool things out of it and I get to sit back and smile.

I haven’t gotten to do that lately. My illness has taken the fun and the triumph out of many things in my life, including being able to surprise all of you and bring you along for the crazy ride with me.

As it turns out, even my illness and this blogging life of mine has a few surprises left. I guess you really can’t keep a good woman down.

I’ll be joining Katie Couric on her new show with some familiar faces so we can all sit down and talk about courage, the need to be fabulous, and that infamous Red Dress. Yes, the one that sat in my bedroom, in the shipping box from fellow Katie guest MochaMomma, for about six months until I was forced to try to put it on and attempt to feel the magic.

I should say I stubbornly put it on. I wasn’t ready and I didn’t want to believe.

Bits & pieces

A lot has happened since I broke down and squeezed my over-medicated, Lupus ravaged, fat body into the original Red Dress.

…But if you want to know more, you’ll have to watch the Katie Show to find out 😉

When Hope Is…Bad?

I’ve been gun-shy to write.

There is so much going on it’s hard to not only keep my blog up-to-date, but keep myself in check when writing.

1/2 mile hike & no dogs allowed at the largest tree on the planet- I can't hike, Nicky can't go

No, I’m not censoring. But thee are things I write that are just for me. Writing is part of my therapy. There are also things I write that are just to rant. And as you all know, once I get going, sometimes there is no stopping me. And lately, there is writing for you, the reader.

I’m getting more and more emails. More and more messages. More and more of you reaching out to say “It’s not just you, it’s me too” and “my family is going through the same thing” or even “I’m so glad you are putting words to the struggle we face ever single day.”

Which leads me to think hard about what I put on these pages. I want it to be honest. I want it to be real. Authentic. But I also want it to not hurt so bad for me, for you, for all of us as we move forward in our world where these ups and downs of chronic illness hit us all hard.

Right now I’m feeling better. I can walk a bit further. I can do a bit more. Of course it’s not anywhere near what a normal person can do, but its huge progress for me.

This scares the hell out of me. I can’t tell you how much it scares me.

It was almost easier being sick as hell and not having a treatment that worked well enough to pull me forward. Sound strange? Let me explain:

Now I have hope. I have hope that I will go back to work soon. I have hope that I will walk and then run. I will exercise. I will lose all the prednisone weight. I will do everything I did before I got sick.

That’s a scary place to be when you know at any time you can go backwards if Lupus or RA or Fibro flares and my numbers rise again and all my hope turns to despair.

I can’t get the kids’ hopes up. I can’t get my husband’s hopes up. I can’t let anyone think things might….just might…be normal again. Because they will never be normal again.

Everything has changed. And nothing will ever, ever be the same.

Nothing makes me more angry than that fact. Because there is nothing I want more than for life to be what it was before this all started.

What I do know, is that there is progress. Slow, steady progress. And as I get stronger, my hope grows. But I keep so much of it inside it makes me burst into tears when I am alone.

I am so afraid of being sick again.

Correction: I am so afraid of going backwards, because I remain sick. I want to keep moving forward. I want to keep showing those I love I can do this. I can get better. This is really happening. It is.

But one small step back and the emotions flood. The what ifs. The what ifs this is as good as it gets for me? What if this is as healthy as I can be?

No. No. Forward. I keep moving forward. I have to. I won’t accept anything less. And I will continue to move at a slow, steady pace so it remains safe.

Safe. Safe. Safe. It has to quiet the hope in my head.

Because hope is a dangerous thing.

Disrespect Shown for First Lady Michelle Obama by GOP in Florida

There is just no way this would happen to Laura Bush or Hillary Clinton.

First Lady Michelle Obama is not welcome at a local high school in Miami by its Republican school board members.

The campaign stop went on as planned at Barbara Goleman Senior High in Miami Lakes despite “Miami-Dade School Board member Renier Diaz de la Portilla has called for the event to be cancelled and board member Carlos Curbelo has asked the board attorney to reconsider his opinion that the event meets legal muster.”

As it so happens, REPUBLICAN Diaz de la Portilla is running for state House and Curbelo has worked as a political strategist for the REPUBLICANS. Shocking, I know.

Curbelo wrote in a letter to the school board attorney:

“Allowing the first lady of the United States to use one of our schools explicitly to benefit the president’s reelection campaign is inappropriate and sends the wrong message to our students, employees, and to taxpayers – even if the president’s campaign is willing to pay for all costs resulting from the event.”

I’m wondering what wrong message that is, exactly…considering Republican candidate Mitt Romney held a town hall meeting right around the same time at Central High School in Grand Junction, Colorado. Apparently their school board members didn’t freak out that his campaign rented the school for the event.

That’s how these things work…the campaigns rent out the schools or halls or wherever for their speeches (the kids are on summer break) and it is all paid for by the campaigns, NOT taxpayers or the schools.

Funny how this never seemed to be an issue before if then First Lady Laura Bush attended a rally for her husband. Or if then First Lady and now Secretary of State Hillary Clinton fired up a crowd to re-elect her husband.

Dare we even ask why First Lady Michelle Obama is met with such disrespect when doing something other First Ladies and surrogates have done for campaigns for decades?

I want badly to play the race card here. But it’s almost too easy. And over done. At this point it’s so obvious it almost no longer needs to be brought up. What is equally as important, I’m afraid, is the total lack of respect shown to this Administration – be it East or West Wing – from the other side of the aisle on inauguration day and the meeting and handshakes held binding the GOP to make sure the black man does not get another term and leaves their White House.

Disrespect. A party that tolerates outbursts of ‘YOU LIE’ during our country’s most honored traditions. A party that tolerates actual questioning of just how ‘American’ this sitting President really is…and if he truly loves his country. A party that encourages the First Lady not be allowed to speak on behalf of her husband…as EVERY FIRST LADY HAS DONE, simply because the other side…well, why is it then…because the other side didn’t want her to speak? Because they were afraid of what a strong, black woman would have to say to hundreds of supporters?

Or because they couldn’t stand the thought of this happening in ‘their’ school? In ‘their’ district? Heaven forbid the Obamas campaign, legally, on ‘their’ turf?

This is the woman who intimidates them simply by eating right and wearing a sleeveless shirt, obviously they can’t handle her on stage in their territory.

I guess we should expect nothing less from the party that wants women back in the kitchen and out of the board room. Who wants to legislate us from controlling our own reproductive fate. Who have spent the past several years waging war against our gender on everything from equal pay to access to health care.

They certainly can not handle this First Lady, who stands for everything they can not comprehend and wish to destroy- an educated, accomplished, strong, mother who can kick ass and take names while she and her husband proudly call themselves feminists.

Add in that she is a woman of color and most of the old guard faints…and hits the floor for lack of their ‘man’ being their to catch them. You see this President, and his amazing First Lady, have provided programs and opportunities for that ‘man’ so he no longer need wait on Mr. GOP Greed White Male.

So go ahead and continue these weak attempts to block our First Lady from speaking across this great nation of ours, and you, sad, sad Republicans, will continue to fail. And our First Lady will continue to bring the roof down as she gets people FIRED UP and READY TO GO for FOUR MORE YEARS.

And if you must, continue to show your true colors by disrespecting our President and First Lady. We have watched it go well beyond politics and we all now know what this is about, and it’s time for the old guard to change. As we know, change is hard. Change takes hard work. But change is here.

Get used to it.