Feeling YaYa

…In Dreams You Will Lose Your Heartache

October 1, 2012 by Queen of Spain 3 Comments

Thank you Disney and a special friend who made our weekend possible. Yes, I toured the park in my wheelchair, and once again Disney’s service to myself and my family was second to none.

It remains on my bucket list to be in full remission and to take a DisneyWorld trip sans wheelchair, however if you are disabled, these are the parks for you. The staff is knowledgable on those who can transfer out of their wheelchair to walk a short distance and those who must stay in, or those who can not transfer from their chairs at all. You can also stop in at City Hall on Main Street USA and request special instructions for those with disabilities and even special passes for those with children with autism, Tourette’s, OCD, etc who may have a hard time waiting in long lines. Come with a note from your doctor, just in case, or your handicap info.

But on to the good stuff!!! Some highlights for you:

Count Waffles was THE HIT of Halloweentime – everyone stopped him to take photos with him. He was BEAMING with all the attention the clearly awesome costume brought. He couldn’t believe tourists wanted their photos with HIM. But look at this guy…who wouldn’t?

His sister, on the other hand, was pouting slightly that her ladybug costume (planned to go with his venus fly trap) wasn’t garnering tourist photos…but the bags of chocolate made up for it.

Then there was MY favorite part of the trip…the new Carsland at Disney’s California Adventure. Can I just say OMG?!!!!!! I can’t even put into words how awesome of a job they did. Ok, maybe I am biased because this was the first movie we ever took our kids to…on Father’s Day. At the El Capitan in Hollywood. But, if you ever wanted to stroll down the street with the rest of the Cars in Radiator Springs, you can REALLY DO IT AT Carsland.

With Carsland conquered (we all won the Piston Cup, btw) and my body having had enough- It was time to do what I do best at Disney…soak in the fun with my family and just watch them do things that make them grin from ear to ear.

There are these moments that just don’t come all the time, especially when your husband is always upset by traffic and his commute, the kids are always busy with homework and now sports schedules. and getting healthy for me has become a full time job…with nothing but treatment and doctor appointment after doctor appointment. always seem to make me smile, no matter how horrible I might be feeling.

…and the perfect night lights to make sure you sleep well. Afterall, a dream IS a wish your heart makes…and boy, do I have some dreams right now.

*disclosure, we were given media passes to attend the events at Disneyland and comp’d a hotel room for one night. Disney has given us Halloween media tickets for many, many years running and we haven’t missed one yet. I would BUY these tickets on my own to attend, we genuinely love it that much. In other words, all opinions are here are true.

Filed Under: Feeling YaYa, Royal Family Outing

Press Pause

September 25, 2012 by Queen of Spain 1 Comment

Even miracles take a little time. – The Fairy GodMother, Cinderella

There is a Lupus walk this weekend for our Lupus charity of choice, but our family won’t be there.

Don’t get me wrong. I would love for you to donate to the Lupus Foundation of America. They rock. They rock hard. And whenever we can, we send them money. We also encourage our friends and family to walk, donate…do what they can. Just this past weekend my beloved in-laws walked in my honor in Fayetteville, North Carolina’s walk. It was emotional for me.

We support the Lupus Foundation 110% and I’m even working to get members of Congress to join the Lupus Caucus at the foundation’s urging.

With that said, there are times my family and I just need to forget the hell that is what we have been through. Come Monday, I will be back in treatment, so we can never forget for long. But there is always a walk. There are always donations needed. There is always the constant reminder that our lives have changed.

So this time around, we’re not going. Aaron isn’t running. In fact, he’s run in one Lupus related 5k just after my diagnosis but that’s it.

Regardless, we’ve decided to spend this weekend at Disneyland. This is one of those times where I’m lucky to be a blogger, and have been invited to check out Mickey’s Halloween Party for what will be the… 5th? 6th? year in a row? Could it possible be that long? And then we’ll stay, as guests of Disney, so the following day we can check out the new Carsland. And then we’ll stay again, as guests of a friend, so we don’t have to brave Carmageddon 2 and can lounge by the monorail themed pool and then eat some Mickey shaped waffles for breakfast…in bed of course, as I am the Queen of all things room service.

Part of living with a chronic illness is understanding it’s chronic. That means I refuse to be Lupus 24/7 and my family shouldn’t have to feel obligated to walk every single walk or be at every single Lupus related event.

Yes, it’s very important to us. Yes, I want to raise as much awareness as possible. But I think I do a good job of doing my fair share.

I also think we’re allowed to take a break, just once in a while, from the drumbeat of illness. Never fear, I’ll be back with an IV in my arm on Monday. It won’t last long.

But until then…please, just until then…give me my rest. Let me pretend. Let me make-believe in a place made for make-believe.

Let me dress as a pirate and giggle with my fake bottle of rum and whistle for the dog to bring the keys to unlock the cell. Let my children laugh and jump with excitement as the fireworks blast overhead, begging to have cotton candy for dinner and turkey leg for lunch. Let my husband find joy in the smiles of his family as we plot Splash Mountain vs Big Thunder Mountain Railroad and experience Radiator Springs for the first time.

Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye. – Peter Pan

Filed Under: #SUCKITLupus, Feeling YaYa

One Small Step for Boy, One Giant Leap for Tourette Syndrome

September 20, 2012 by Queen of Spain 40 Comments

My son has gone back and forth about wanting to talk about his ‘ticks.’

That’s what we call his Tourette’s and OCD in our house. They are simply known as ‘my ticks, Mom’ or ‘…because of my anxiety.’

So when a writing assignment came along in school this week- very innocently, just the usual daily few sentences with a writing prompt to get them going- he froze.

He tells me some kids were writing about beating bosses on video games. Something he has done over and over again and is very proud of.

He tells me some kids were writing about no longer being afraid of spiders, or in the case of one kid, getting ‘bumped’ by a shark.

You gotta love 4th graders.

And there sat my son, debating with himself back and forth and back and forth if he should tell his teacher or his class or anyone that every single day he battles and overcomes all the zigs and zags of his brain. His brilliant, sensitive, amazing brain that causes him to (currently) do everything in ‘3s’ and mutter the last word of a sentience under his breath three times or hand wash and hand wash and hand wash or hand wash.

His ticks come and go with his anxiety level and he can control them very well with all the tools from our therapist. His ticks also change constantly. Sometimes they rotate and a new tick I’ve never noticed before is suddenly very prominent while another has faded. Some fade and never return. Others seem to be on a regular rotation. Regardless, he handles them with more grace and ease than any child should have to and he has zero shame or embarrassment.

At least, he didn’t. Until he began to mature and realize not everyone does what he does. Not everyone flaps their hands and jumps up and down while playing a video game, simply because it’s exciting. Not everyone covers their ears during a school play, because the cheers are too loud. Not everyone cries while looking out the window of an airplane, simply because the earth below is so beautiful.

Not everyone would take an in-class writing prompt home, so he could talk to his Mom about whether he should tell everyone he has Tourette’s.

I think they should know, but I’m not ready to really talk about it. I don’t want to give them a speech or anything. But maybe they won’t bug me so much then.

My stomach did a flip.

What do you mean ‘bug you’… has anyone said anything?

Well no, not really. But you know my friends they don’t care but some of the other kids might look at me and think I’m weird. You know Mom, I know I’m a wimp.

You are not a wimp. Why would you say that?

Well, I don’t mean that like a bad thing. I like video games and I’m not into like sports and stuff. And I’m a geeky wimp kind of kid, not like a kid that pushes other kids outside and plays those games where you punch arms and stuff.

There are LOTS of kids at your school like you buddy. LOTS. It’s great to have all kinds of friends and maybe it’s time to find some more of those kids that are like you.

But if I tell them about my ticks, they might think I’m even more weird.

Or maybe, they will better understand you and like you even more for who you are. But you can still write about anything you want honey. Anything.

…and he gets up and does this thing he does…his running from our front door to our back door. Something he just does that I’m sure is a tick, but we’re so used to it that it doesn’t register. He’s thinking. This is how he thinks. Sprints in my living room. Always having to touch the door a certain number of times. Always needing to ‘balance’ it out with exact same number of touches on the opposite wall.

Mom, I’m going to write it, but I’m not going to write a lot. My teacher might be the only one who sees it anyway, but maybe not. And maybe someone will ask me what I wrote. But I don’t want them to know too much. I will just write one thing about what I overcame and that’s it.

..and with that one thing, he took one very big step.

Filed Under: By Order of the Charter, Count Waffles, Feeling YaYa, Stepford Crazies, tic-toc

Rock the Red: Erin Kotecki Vest on Katie Couric’s New Show

September 13, 2012 by Queen of Spain 16 Comments

So I did something a bit daring while in New York. Ok, I did a few things that were a bit daring but today you got to see one of them on national television.

Source: katiecouric.com via Karla on Pinterest

Yup, that’s me. In a custom made-for-me dress standing next to the bombshell Kelly Wickham, and Jennifer Lawson. You may know them better as MochaMomma and The Bloggess. Then, of course, is Katie Couric and Karen Gilmour, and the only one NOT in red…the amazing Brene’ Brown.

I could talk about how my fears nearly overwhelmed me and I almost canceled when the tailor couldn’t make a dress that made me look presentable.

I could talk about why I’m in flats, while you’ll notice everyone else is in matching heels.

I could talk about what it’s like to wonder what the whole world will think when they last time they saw you on national tv you were slim, fearless, and talking about women in politics.

Instead…I want to tell you about what was going on backstage. Because backstage is the reason I had the courage to go on stage.

Many of you know my husband, and know all he has done for me as we have battled this horrible illness together. What you may not know, is that being the ‘caregiver’ of someone with a chronic illness might be worse than having the illness itself.

I can’t imagine watching him suffer, trying to help, and being able to do nothing but watch and wait. And wait and watch. And maybe do some laundry, and grocery shop and take care of the kids…because it’s all you can do while you watch and wait.

He’s watched me lay in a hospital bed more times than I care to remember.

He’s watched the clock tick by, slowly, as he waits for the doctor to come out of surgery to tell him I’ve made it through.

He’s watched me sit on our couch, healing, sleeping, typing, talking, frustrated and fuming that nothing was changing.

He’s watched me undergo treatment bi-weekly, take a million pills, inject myself with drugs, writhe in pain when things don’t work, and get up and smile when things do.

He’s watched his children watch me. He’s watched me comfort them and try to hold it all together. He’s watched them grow even closer to him as Mom became untouchable at times.

He’s watched me do my best to put on a brave face, when all I want to do is hide in his arms and have him tell me everything will be ok.

He watched me get so ill and small. He watched me get so large from the drugs. He watched me get angry at the world. He watched me screw up. He watched me say I’m sorry. He watched me become healthier, only to get knocked back down. He watched me slowly get stronger and healthier, as the roller coaster of the role of ‘caregiver’ continues.

And in that green room, he watched me own the hardest part of being the ‘sick one’ and him the ‘healthy one:’ He watched me tell the entire world it was ok to NOT be the strong one.

It took me too long to get there. So long, I could be a healthier woman now had I just not been so damn stubborn.

But I decided to dare greatly, and change.

Change is so hard. Especially for a strong, independent, take no bullshit kind of woman who was determined to have it all. The career, the kids, the white picket fence.

All the while with him watching with pride, with fear, with hope.

Not many people get a chance in their lifetime to have what we have. The friendship. The fierce loyalty. And the genuine respect.

When I sat on that couch, with one of America’s best know talk show hosts, he watched. But what he may not have known as he did, was that all I could think about was him and how he got me here.

I know how strong I am. I know I can get anywhere I want and put my mind to- from the White House, to a maternity ward, to the end of treatments because I will be, someday, in remission.

But on that stage, I had to own my faults and I had to declare to the world that my ‘caregiver’ was and is what has gotten me through. I did not need to be strong and I had to be vulnerable in order to survive.

I wish I could tell you it gets easier from there. That you dare greatly and then POOF! life is grand. But no. There is much work to be done. Because the wake of all those mistakes, the wake of all that fear, the wake of finally letting go and entering a new normal makes for hard work.

But for one moment, that one serene, I accept what has happened and I am ME moment, came in that red dress. And it carried over onto that stage where once again he watched. My constant. At the ready.

So I’m going to soak up this moment. For him. For me. For us. Because it will be gone quickly…just as the Katie Show aired, I was receiving an IV infusion cocktail to make my body stronger and push me to remission.

And I will only get there if I continue to dare greatly, with a great man by my side.

So put on YOUR red dress and tackle what YOU need to tackle in life. Make yourself vulnerable. Be brave. Be fearless. Step out of your comfort zone and do what I did: admit and admire.

Then rock the red.

On September 14th, 2012 at 12pm Eastern you can register to win a gift card from Gilt.com to purchase a red dress. If you do not win, never fear. You can still buy a dress at Gilt’s red dress sale.

And if you happen to like the design I was wearing, Gilt has arranged for you to have it custom made by one of their fabulous designers. Fit to your specifications, for us bigger girls. If it was a bit hard to see, it has these great Kimono sleeves and I blinged it out everywhere. I’m calling it the ‘Erin’ dress because it was made special for me, by their designers, for the show. Why? Because steroids do evil things to a woman’s body and nothing, sometimes not even regular plus sized clothing, fits right. So if you want the ‘Erin’ made for you, contact press@gilt.com and they will take care of you. Price will depend on size, etc. but the dress will be around $385. But then you can name it the ‘Jane’ or the ‘Debbie’ or the ‘YOURNAMEHERE’ and know it was YOUR red dress, made JUST for you.

And if this is all just too much, and you aren’t quite ready to rock the red…email me. Let’s talk about it. I’ve been there. As I told Katie Couric, I didn’t want to do it either. queenmediallc@gmail.com – or leave a comment.

Battling chronic illness is hard. It leaves its mark on EVERYONE in the family, in your life. It has left its mark on my marriage and I am grateful every day he shows up to watch, to help, to just be.

Because daring greatly means loving hard, and I wouldn’t have it any other way.

Filed Under: #SUCKITLupus, Feeling YaYa, Kaiser

Erin Kotecki Vest & Kids Head to the Democratic National Convention

September 4, 2012 by Queen of Spain 8 Comments

My Lupus ravaged body creaked getting out of bed before dawn this morning, as it does every morning these days.

I took my pills and made my usual cup of green tea, mentally going over the check list.

Sweatshirts in case it gets cold
the special bag that attaches to my wheelchair
Gum for the kids
Notebooks and pencils for homework
Those pills I switched to…no, not those, the other ones, the ones instead of the injection….

This went on in my head for a good 20 minutes before I sat here at my computer, wondering if I was crazy for attempting this trip at all.

But I know I’m not crazy. The President and First Lady keep asking if we’re ‘in’ this election.

As we pack up the car to head to the airport. Flying from Los Angeles, California to North Carolina…with two kids, two suitcases, a wheelchair, and enough medication to ensure I am comfortable for many days…we couldn’t be MORE ‘in.’

We will fight for those who fight for us. The kids know it. They understand without blinking an eye why this is so important…

Mom, the President has helped you while you are sick. Now we have to get people to help him.

That’s right baby. It’s time to help him.

See you in Charlotte.

Filed Under: #SUCKITLupus, Feeling YaYa, Obama2012

Just Because

August 31, 2012 by Queen of Spain 17 Comments

I touched on something in my last post I want to circle back around on, because it deserves a post of its own and a discussion of its own.

My daughter’s reaction upon hearing we’ve never had a woman president.

I guess it just didn’t really occur to me that she had thought about it yet, or noticed. Or hadn’t noticed, as the case may be.

The questions came fast and furious and I didn’t have many answers.

Why hasn’t there been a woman president?

Why aren’t there that many women in Congress?

Why don’t people elect women?

Why did they not give women the right to vote?

Why did it take so long?

Why would they tell women no?

Why would anyone DO THAT MOM?

I did the best I could. I explained to her, as well as I possibly could, why our history was unkind and still can be very unkind to females. I tried to explain the patriarchy. I tried to explain what we face as women.

But I don’t feel I told her everything or anything close to what she needed to know.

The look on her face said it all as we talked. She was shell-shocked. I had shattered her fairy tale. I had shattered the way she thought the world worked.

I had been the one to break the news to her that because she was a girl, her life would be different. Even if every word I said tried to convey that she could do anything, be anything, go anywhere.

I also did my best to empower her. Steel her. Strengthen her and hold her close. I told her of amazing women who fought to make sure we were given equality. So that SHE could vote, run for office, become the first woman president.

Yet I feel, as I told her these stories, I stole a piece of her innocence.

As we hugged and kissed goodnight, and I scrambled for even more words to try to comfort the look of disbelief in her eyes…it was she who comforted me.

Mom, I know I told you I wanted to be a cowgirl, and maybe a Mom, and maybe own a ranch. But I think I’ll be President too. I just want to now…just because.

And I understood, perfectly…just because.

Filed Under: Feeling YaYa, Obama2012, Princess Peanut, Stepford Crazies

12

August 19, 2012 by Queen of Spain 10 Comments

Happy Anniversary.

I’d like the next 12 to be filled with more laughter, love, and just plain old fun.

Filed Under: Feeling YaYa, Kaiser, Stepford Crazies

Water Worries

July 1, 2012 by Queen of Spain 4 Comments

My nine-year old son’s swim trunks are the ones on the left. His father’s hang on the right. As I wandered into the bathroom this morning and looked up at them both I nearly fainted when realizing they seemed the same size.

How can that be?

I was just in the community pool, him in swim diapers, sitting on the stairs holding him tight because he was afraid to go into the big pool. He had a denim hat and adorable little swim trunks and I would slather him until he was he color of paste with sunscreen.

Now he jumps in and can grab the ring at the bottom of the deep end…on the first try.

His nine-year old mind has been hard on him lately. Much like swimming, it can bog him down and pull him under as he wrestles with all his ideas and thoughts and confusion. His sensitivity and intelligence are like weights around him. But he’s learning to use them as easily as he uses the pool noodles and kickboards instead of letting them tug him down.

And boy do they tug.

As I watch and listen to him struggle with pre-tween, pre-puberty and pre-those years…I am reminded so much of all those feelings and issues and thoughts from when we were all children and our chests felt heavy and there were a million butterflies in our stomachs. And I want so badly to pull all the weight off his chest and free every butterfly from his belly. I guess that’s what any parent wants.

But I can’t.

Instead I found myself feeling the silky fabric of his swim trunks this morning, knowing he’ll buoy himself up and down a lot for the next…oh….decade. And wishing him all my knowledge and his fathers and hoping it will help keep him above water for the majority.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies