Good Luck, Disney

I might be cooking dinner, or folding laundry (ha! my husband is cracking up right now) or even working on some of my own homework…but if I’m occupied that probably means the tv is on.

Sometimes I hear animated voices blasting from that square flat thing on our wall. Sometimes I hear music and video games. But most of the time I hear the “approved” channels at our house which basically include Disney, Disney jr., and Disney XD. Why? Because I can trust them. We have a level of trust Disney and I.

Not to compare the two, but currently this political Mamma signed a petition asking Nickelodeon to stop marketing junk food to kids. According to MomsRising, a 2012 study by the Center on Science and the Public Interest found that 69% of Nickelodeon food ads sell junk food to kids. This after Disney announced it will no longer accept advertisements for most unhealthy foods on its child-directed television, radio, and websites, and that it is updating its nutrition standards for marketing to children. See what I mean about trust?

That trust carried over as I got to chat with Leigh-Allyn Baker, she plays Mom Amy Duncan on Disney’s “Good Luck Charlie” and understood entirely when I told her about the trust I give to her as she enters my home every day, entertaining my kids while I’m busy getting dinner ready or packing lunches. Leigh-Allyn isn’t only a Mom on “Good Luck Charlie”- she also has two young boys at home.
2013 Creative Arts Emmy Awards - Arrivals

Photo Credit:  ©Mark Davis/Getty Images

We chatted about what most moms tend to chat about when given the opportunity: our kids. I went on and on about how mine adore her show, which just wrapped it’s fourth and final season and asked how she does it all. I mean, I realize I have to battle Lupus with my treatments and doctors appointments and still attempt to raise the kids and what not…but this woman stars in a Disney show, directs, produces, just finished shooting a movie (she called it a cross between “Uncle Buck” and “Goonies”…how can you NOT love that?) and is raising two little boys.

We talked about that trust thing too. With former Disney star Miley Cyrus’ Video Music Awards performance still on everyone’s minds, and my admission to Leigh-Allyn that my daughter BELTS out her co-star Bridgit Mendler’s songs ALL DAY LONG, it’s hard out there for a parent. Even a Disney parent.

Leigh-Allyn was smart and sweet about it all though. First of all, she assured me that if there is any girl that you want your girls to look up to it’s Bridgit Mendler. Hope she’s right with that one, because my 8-year old has “Ready or Not” on replay on her iPod. She also made some great points about Miley Cyrus (whom she’s worked with) when she said it’s good for kids to see the consequences of their actions. She said the kids may see what happened on the VMAs (if they were allowed to watch) but they also need to see the aftermath. And don’t get the two of us started on how the three grown men on stage escaped ridicule. But that’s another post for another time.

Oh and that whole balance thing? I told Leigh-Allyn she should write a book next because she had some great advice there as well: she called it “No brainer parenting,” where it did her no good to pine for her baby while at work or hold her baby while at home and worry about work, so she trained her brain to enjoy her life and live in that moment. It was key to making her work life and her home life successful. Total attention to her boys while at home and total attention to work while on the set. From that her children got to see a Mom who does what she loves and makes her happy.

Which is all we can really ask for, doing what we love and being happy, right? Which is just another reason to trust the Disney brand as it comes into my home through my TV or video games or books. I need to know they are looking out for my kids and sometimes, even me.

We’re headed to Disneyland* this weekend for Halloweentime and there is already a lot of talk about Disney’s upcoming “changes” to their Guest Assistance Cards for the disabled. I will be in my wheelchair. Getting those stares from people who look at me and wonder if I’m just lazy or if there really is something wrong with me. I can only trust the good in people.

I know many are very concerned about what the upcoming changes to the GAC means for parents of special needs children. This seems to be question #1 for Disney right now and many are already organizing change.org petitions, threatening to give up their annual passes, and generally throwing monster sized fits because their trips to the happiest place on earth will forever be ruined. The problem here is everyone seems to be working off rumors and speculation. Yes, the process is changing due to abuse of the system. So let’s go with what we KNOW is true. This comes directly from Disney to me:

Disney has an unwavering commitment to making our experiences accessible to all Guests.
After careful consideration, we will be replacing the Guest Assistance Card with the new Disability Access Service Card on Oct. 9 to create a more consistent experience for all our Guests while providing accommodations for Guests with disabilities.
Until Oct. 9, we will continue to use Guest Assistance Cards. We look forward to sharing more information about the Disability Access Service Card as we get closer to implementation.
I think where the confusion came was it was originally only reported that the GAC was going away with no mention of the new system.
Frequently Asked Questions:
How will the new program work?
The Disability Access Service Card will offer Guests a return time for an attraction based on the current wait time. Guest Assistance Cards will continue to be in effectuntil Oct. 9. We look forward to sharing more information as we get closer to implementation. 
Did you ask for feedback in developing the Disability Access Service Card?
We are engaging disability groups, and Autism Speaks was instrumental in providing feedback as we developed this new process.
Why are you doing this?
Given the increasing volume of requests we receive for special access to our attractions, we are changing our process beginning Oct. 9 so that it creates a more consistent experience for all our Guests while providing accommodations for Guests with disabilities.
 Who will be eligible for a Disability Access Service Card?
Our goal is to accommodate Guests who aren’t able to wait in a conventional queue environment due to a disability (including non-apparent disabilities).
Will Guests on wish trips also use Disability Access Service Cards?
No. Guests who are visiting through wish-granting organizations will have access through a separate program. 
What should Guests do if they have concerns? 
Guests should contact Guest Relations to discuss their assistance needs.

Now…I want to highlight a few things up there because I think they are important. The part about “sharing more information” as it gets closer to implementation time. The Part about guests with concerns contacting guest relations with their assistance needs. The Part about making experiences accessible to ALL guests. That means ALL. That means, in my mind, they will have to find a way to make special needs parents happy. Will it be the same as it was? No. Do I expect Disney to leave a community out in the cold? No. I don’t.

I trust.

I trust that when this entire program is rolled out there will be accommodations made for those who need it and no one will have to give up their happiest place on earth, their annual passes, or the only place they can take their special needs child.

I also trust that the place on this coast and the east coast that has been the ONLY place on earth to give my family respite from this hell of an illness, this never-ending IV, drug-laden, life changing disorder that has rocked our world will continue to be that respite, that very special place, that ONLY  place where we can forget real life for just awhile and be a normal, happy, family.

Maybe I’m naive to allow their very nice actress to call me to discuss motherhood and the show my children love to watch, while their spokesperson gives me their latest lines about how their new park cards will work for families like mine…but I don’t think so. Not when you’ve felt the magic and wished upon the star and done all the things a mouse or cricket or even Princess told you to do, because if you did, it would all be ok.

I trust.

I hope I’m right.

*Disneyland has invited my family to experience the parks as it has for the past several Halloween celebrations as media.

Of Leeches and Heroes

I get a lot of emails. Especially now that I’ve gone public with my illness and the hardship it has brought on my family.

Some emails lift my spirits in ways I can’t explain. Others who understand how difficult it is to manage a chronic illness and a family, yet keep on laughing

Some emails break my heart. The stories upon stories of just what getting sick can do to one household. It is why I fight so hard for Obamacare. It is why I make sure I scream from the rooftops that those of us who need things like assurances that our pre-existing conditions won’t be taken into account when we apply for insurance are heard.

Because it’s not a joke when we say it really is a matter of life and death. It is not rhetoric. 

We worked hard to turn the Affordable Care Act into law. No, it’s not perfect. It is a start. We will NOT turn back. The current debate in Congress over Food Stamps? We’re not turning back there either, because in case you haven’t noticed…many of us who have gotten sick now need help due to the absolute disaster of a healthcare system we have in this country. We are drowning in medical debt at my house and we have great insurance.

This is just one of the many emails, just one of the many stories. This is your neighbor, your friend, your family.

Read what was sent to me below and then go to HealthCare.Gov to learn more.

You will not DEFUND ME. You will not DEFUND US.

-Erin

I Am a Leech

by Anonymous 

I may have an auto-immune disease. I am a woman. I am also poor. My insurance is supplied by the state. I have five children – they are also using state funded insurance. I get food stamps. According to the GOP, I and my family are leeches.

Let me tell you a little something about living as a leech.

For years I worked as a nurse aide, then after an injury at work I began working as a freelance writer and blogger. My husband worked in the rental industry and worked other jobs. His last job involved leaving home before six in the morning and getting back after eleven in the evening. I was pregnant with our first son. We did not have a lot. We made due, like everyone else. Our oldest daughter has autism and we worked to place her in the best programs possible.

My husband was injured on the job while working in the rental industry, but he kept working until jobs began to dry up during the Great Recession. I kept writing, bringing in extra to try to make those ends meet. He worked with a friend painting homes, then one day he came home with his injured knee swollen and something bulging from the side. That was the end of being able to walk without pain or swelling for him.

I took on as much work as possible. Trying to make ends meet when clients want to pay you one dollar for five hundred words? That burns you out. Non-paying clients, low paying clients, and then advertisements that end up being a spam scam? Yeah.

For years we made due with very little. We refused to ask for food stamps, no matter how low the pantry was. He and I went without eating to ensure the children always ate. One day I began falling ill with mysterious symptoms. The day I couldn’t lift my fingers to type was the day I went to the emergency room. The doctor there told me she believed I could have Lupus.

At the time I had no insurance. No primary doctor to fall back on. No tests to go for. Nothing. We saved our tax return and moved out of the city, I hoped living in the country would help my symptoms and give my children a better place to grow. After almost a year we decided we would need to apply for at least Medicaid and food stamps (SNAP). We qualified.

Let me tell you, if you think that SNAP recipients are just handed a huge amount, you’re wrong. We qualified for $450 a month. That is for seven people. We utilize meals plans, careful shopping, and coupons in order to make it last. This leeching family spends more time ensuring that our benefits are well spent than most people ever imagined. Processed food? No thank you. Our meals are made from scratch. If my children eat cookies and cinnamon rolls, they’re homemade.

It bothers me to accept assistance. Even though I’ve paid taxes and should be thankful for this safety net. It bothers me to the point that I hide my EBT card in a way that it cannot be seen when paying for food. Even though our cart is full of nutritious food for our children. Because no matter what you do, you’re bad when buying with food stamps.

Don’t believe me? Look at arguments online. If a food stamp user spends money on ‘junk’, they’re bad. Anything that is considered sugary or processed is wrong. But wait, if you spend your benefits on natural, healthy foods like fruit and vegetables, you’re still shoving your benefits in people’s faces by buying what they can’t or won’t. Honest – I could buy nothing but flour, sugar, vegetables, and everything else to make meals from scratch but the moment someone saw the one six pack of Pepsi in my cart? I’m a Food Stamp Queen.

What does my health have to do with this? Well, we applied because I was having a hard time writing. Heck, I was having a hard time walking from my bedroom to the kitchen for morning coffee. I was in severe pain. Imagine your bones burning. Literally burning away inside of you. Your muscles weak and shaking from the sheer exhaustion just getting out of bed caused. Typos all over your articles because lifting your fingers was too much.

That’s why we have these ‘benefits’. I’m smiling as I write the word benefit because, really, there are people that believe there is a benefit to being sick and poor. The reality is that when you have state insurance your doctor runs only the basic tests. If those tests show nothing severe, you’re not sick. You’re sent home and told to take some ibuprofen and cut your stress levels. Have a knee with severe dislocation and torn, deteriorated cartilage? Bone worn down until the grinding is audible to anyone listening?

Go home and take some ibuprofen.

This is my benefit. This is my husband’s benefit. Being stared at as if we are criminals, made to feel ashamed for making sure our children are fed. Not allowed more extensive tests to help us get better so we can get off of the system. To top that off, because we stooped to ask for help, there are many that would deny us the right to health care at all. Thanks to ObamaCare we can have the most basic of care, but there are those that would deny us this. Why? Because the sick and poor do not deserve to exist. My benefits do not pay my bills fully, because of this my propane company is pocketing a big $87 a month that they refuse to put toward out back bill and won’t deliver anything else until all $1800 is paid. This is after paying them faithfully every month for a year – they misquoted us on the full amount, but it’s still our problem.

We don’t have a car, social services refuses to help with transportation, even though that’s the law. Shortage of funds in our county. The bus route in our rural area was cut, so that’s out of the question. Without transportation to social service mandated tests or reporting, we will be ‘sanctioned’. Even with all of these so-called ‘benefits’ we are worse off than before. We can’t afford to pull out of the system but we can’t afford to stay in it. The stress from it causes my symptoms to rear their ugly head and that causes more stress until I can’t work.

Every time my body decides to flare up symptoms, some part of my body is being attacked. It is being damaged. Without the tests and care to determine the cause, the damage progresses. Without medication to control this, I will die early. My family will be left without a mother. A mother that loves them enough to work through the pain, the exhaustion, and to bite back her pride enough to apply for assistance. My husband will still be disabled and without me, he will need to find a way to supply their needs, even if that means being a prisoner of the system. Being shamed for swallowing his own pride.

We are sick. We are poor. We are leeches. Yet still, we fight. We fight to find work. To keep our family above water. We will continue to do so until our bodies are broken. Why? Because that is what an American does. Regardless of your party – you fight to survive. If that means asking for help when you’re broken, so be it.

I am a leech. But, I will live until I die whether anyone likes it or not.

Today is That Day

Today is one of those days you have a hard time explaining the world to your children.

Today is will always remember two men who didn’t ask questions, didn’t blink…but did their jobs for me when I called on them and asked. Even though they were in grave danger and ended up running for their lives. Yet there they were, doing what they do best in the midst of the chaos and informing the world of what they saw.

Those two men will forever have my admiration. They both choose to remember today in their own way and for every year that has passed I’ve never tried to push a celebration of their lives or shower them with public accolades. I’m just forever glad they are alive and forever glad they tolerated my calls during the horror.

Today is also the day I, somewhat like the Grinch, had a body part grow three sizes that day. Except it was my spine. Never again did I just do what I was told. Or take an assignment and go where I was told. Upon reflection of the day’s events I should have said no to sitting below the two tallest buildings in Los Angeles, awaiting their destruction so I could report from the middle of it…if I survived.

Today is the day I turned my career from a young reporter, to an investigative reporter to be reckoned with in one of the largest cities in our nation. I’m proud to have forced the city to spend millions to shore up security at our ports and our local water supply and proud to have the awards and special momento (given to my news director) as a reminder. May that lock  sit on her desk forever.

Today changed so many lives forever, not all are as kind as mine. Today I am grateful to still have so many of you in my life who nearly were gone forever and my heart still aches for those lost.

Today is the day I use up a lot of my wishes, the same as I did so many years ago.

Lunchtime love

Living with Lupus: Reclaiming Me

Taking back my life from Lupus is no easy task.

But I’m doing it. Slowly. Piece by piece. Part by part. Brick by brick.

I’ve learned to manage the ups and downs of the pain. Which, truth be told, has been the hardest part. When you don’t want to get out of bed in the morning or fear what level of hell awaits when you open your eyes every morning…then you know what it’s like to live with an auto-immune disorder that makes your body hurt day in and day out.

But I’m finally used to that now. I can get out of bed and handle myself like a nearly normal person. I can make myself tea, take my pills, make lunch for the kids and pack their backpacks. All while grimacing in my head. As the doctors and nurses always ask ‘Are you at a 10 or a 4 or a 7?’ in my pain levels…it doesn’t matter. I can be at a 10 and still go about the morning routine. Because I have to. This is life now.

And because I won’t let it ruin my day and I won’t let it RUN my day any longer.

Then I had to take back the scheduling of my life. Yes, basically I spend my days in a doctor’s office or in treatment with an IV hooked to my veins.

I’ve now learned to schedule everything so it works with everyone else’s schedules. I go when the kids are at school and my husband is at work and no one is the wiser. I’ve taken back the part where everyone would have to move their day and lives around to take care of me.

And onto my bold step. The big one that will test how much this Lupus ‘fog’ has taken over. While I have taken some community college courses online in the past, I’ve kicked it up and re-enrolled in the school where I started: Michigan State University. I had to write a short essay explaining why I wanted to be re-admitted. And for some reason, they took me back.

#Sparty

I’m officially a Spartan again, although I’m not sure I ever really stopped being a Spartan. I’m hoping to finish my degree in journalism by remaining a parti-time, disabled student, taking courses online from my home in California.

I’m excited. I’m very nervous. Bust most of all I am proud of myself. I found a way to keep my mind busy while I figure out my next big step: taking back my body.

Stay tuned.