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.

Start Spreading the News

Something I’d like to tell you!

For more information please see BlogHer’s conferences page for details. Join us!

Tears and Thanks to the Supreme Court for the Affordable Care Act Ruling

I’m not going to lie…I was holding my breath. Would my pre-existing condition be covered? Would it ruin our lives forever? Would the millions of us with chronic illness be trapped in this horrible pre-Affordable Care Act hell that meant we paid and paid and paid and lost our homes and worried and worried and worried about how we’d pay and what we’d do if we couldn’t get coverage.

Then the media finally seemed to make sense of the Supreme Court Ruling:

Yes, that means people like me have hope. The conservative leaning Supreme Court gave us hope. The Affordable Care Act is not perfect, but it is progress. It is a step forward. It means those of us with chronic illness have HOPE in this world where we spend thousands upon thousands with good health insurance just to pay for life saving treatment we need to survive. Imagine what that is like, and imagine what this ruling means for those of us who live this hell daily.

Right now the only words I have, with tears still streaming down my face, is thank you Supreme Court. Thank you. Millions of Americans need this. And we need MORE of this. Let this just be the first step in making sure everyone has access to health care and that everyone has the right to get well and see a doctor and find a treatment that works.

I should know. I have spent the past two years fighting for my life. This ruling means people like me can fight to live another day, and do it with the HELP of our government.

It takes a village, and that village just got my back.