Feeling YaYa

We Just Enrolled in Obamacare

November 13, 2013 by Queen of Spain 41 Comments

Yup. The entire family just ditched my husband’s employer provided health insurance* and as of January 1, 2014 we’ll be on a plan with a different insurance company. One that, unlike Aetna, decided to go after our business and compete in the marketplace.

Our old plan had deductibles, and the out-of-pocket costs were 6k for individuals and 12k per family. This new plan from Blue Shield of California? No deductibles. Lower out-of-pocket maximums. Lower copays. Lower drug costs.

All of our doctors are in-network minus one. But that’s why I got the PPO. It’s also a 90/10 which means we pay 10% of things normally not totally covered like hospital stays and MRIs and what not. Our old plan? 80/20 in network and 60/40 out of network. Keeping in mind just about EVERYTHING for me was out of network.

After doing all the math, just to start, we’ll be saving $18,900 per year. That is without knowing if I will be hospitalized in 2014, or need surgery or any of those things. In 2013 I was hospitalized once in July and the bill is still sitting on my desk. I’ve been making payments.

If the judge from my Social Security Disability case rules in my favor, that means I’ll be eligible for Medicare as well. IF that happens, that will mean we may not have much out of pocket at all.

This makes me shake and cry.

We are one of those families who have been buried in medical debt since I got sick. We’re one of those families the President talks about…the ones who are so close to losing everything because Mom got sick. We’ve re-financed our mortgage using the HARP/HAMP plans with JP Morgan Chase. It wasn’t easy or pretty, but we managed to save some money per month to keep our home.

Now we are utilizing Obamacare. And yeah, go ahead and call it Obamacare, because without the President we wouldn’t have this opportunity.

I realize many of you are getting hit with higher premiums, but understand they have been higher EVERY YEAR FOR YEARS. This is WHY we all wanted health care reform in the first place. Premiums were going up and up, deductibles were going up, care was a pain to get at best and you had to fight your health insurance company for every drug your doctor prescribed and for every test they wanted done. Please understand this is why we went down this path and supported President Obama at every turn. Because the industry needed change, but more importantly Americans deserved better. No one should be as afraid and stressed as we are/were while battling an illness. In the greatest country on earth people lose their homes, they lose their jobs, they lose their insurance because the company tries REALLY HARD to kick you off the policy…they lose their MINDS because they are sick. All they should be doing is healing and getting bettering and following doctor’s orders. I know this first hand. I have lived nothing but THIS for nearly three years.

In my case, the stress was so great I tried to go back to work several times. It made me sicker. Had I not tried, I might not be as sick. I might not have as many problems. I might have a home that isn’t adjusting to a new normal but simply going about life as usual.

I came up with a plan. It had to include disability that was solid. So I used my employer given benefits and I fought Mutual of Omaha at every turn. After 9 months of denials and questioning and all out war, I received long term disability. Part of my policy states I MUST apply for SSDi and I MUST appeal any denials and use their lawyers.

It’s fine though. I now get a check. It essentially pays our mortgage. If I do get SSDi, my income won’t change, but SSDi will pay part of that check and Mutual of Omaha long term disability will pick up the rest. It’s being eligible for Medicare that will really change the game. Never mind that Mutual of Omaha still puts me through tests. They currently are seeking another rheumatologist for another (it would be my fifth) opinion. At least that’s what their letters tell me. However my guess is they are having trouble finding someone I haven’t already seen within a 100 mile radius.

My plan also had to include affordable health care. That meant joining the chorus of supporters for the Affordable Care Act and whenever I was physically able I had to make sure it passed. Then, once it passed, it had to stay law. Something the Right is still trying to overturn. So I continue to fight, even while hooked to an IV.

Now we have Obamacare. My family is enrolled.

Typing that is almost surreal. We are enrolled in Obamacare. Instead of Aetna we will have Blue Shield of California.

I feel like my armor has been fortified a bit. I’ve been fighting this battle for nearly three years now, and for the first time I feel like we have a real chance to keep our financial lives in order, and I can take away a little stress from this house. For someone who has been nothing but sick, nothing but helpless, nothing but reliant on others…this is huge.

Yes, there are tears streaming down my face as I type this to you. I’m not sure if you can comprehend what true illness and financial stress does to a family. Constant stress is no way to get healthy. All I want is to be healthy. I’m trying so hard. I am doing everything I’m supposed to do and have done everything I was asked by every doctor. I just want to get better and return to LIFE.

I know that is not the case with every American. Not only do they not understand, but they don’t care. It’s MY problem, not theirs and they feel no need to help in anyway, shape, or form and that certainly means Obamacare. I’ve been told this is ‘natural selection’ or ‘survival of the fittest’ and too bad for me. I’ve been told we should have planned better. We should have saved more. We should ask family for money.

Let me be clear- you can plan and save all you want, but when you are chronically ill or in a serious accident or get an unexpected illness, ONE hospital stay can set you back more than your home costs. You can’t plan for that in regular America. We have insurance, we had savings, we have family support and we are still hanging on by a thread.

And then there are those who wanted to keep the health plan they had, but their insurance company didn’t play by the rules. They are finding their state isn’t participating in ACA and denying it’s citizens the funds for Medicare. Or their state isn’t participating so there isn’t’ much to choose from in their exchanges.

To those Americans I would urge you to fight like I did. Fight like hell to make sure your state and your politicians LISTEN and do what is BEST FOR YOUR FAMILY. Make them take the Medicare money and make them participate! You have the power. You have a voice and it’s louder than you think. Look at me. What did I do? I told my story to anyone and everyone that would listen and argued with anyone and everything I found dead wrong.

My family and I told our story to the White House. So can you.

We are now enrolled. We are getting $0 in subsidies. But we are saving at least $18,900 per year. For a family that is swimming in medical debt, with no end in sight, we can now see light at the end of the tunnel.

That light is Obamacare.

See if you have some light too. Go to HealthCare.gov and either create an account or call the number. If you don’t trust the government, let an insurance broker do it for you. I don’t care HOW you do it, just do it.

I look forward to paying our first premium. It will be the same as what we paid out of my husband’s check anyway. However we will now get so much more.

Thank you Mr. President.

Thank you.

*Update 12:07pm November 13, 2013 I’ve added a flickr photo set of the Aetna plan we had the opportunity to ‘re-enroll in’ from my husband’s employer.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Mrs. Kotecki Vest Boldly Goes to Court

October 26, 2013 by Queen of Spain 9 Comments

I walked into the building having zero idea of what to expect. A conference room? A few conference rooms and a waiting area?

Turns out, in Los Angeles, if you want to be approved for Social Security Disability Insurance you need to go through a grueling, horrible, humiliating process that includes having no idea what in the hell is going on except everyone believes you are a liar and a mooch.

I didn’t want to apply for SSDi as it’s commonly known. That’s for old people. Like REALLY OLD PEOPLE. I’m 38 and I have every intention of getting well and going back to work. That’s all that I kept repeating in my head as I filled out the initial form and then others and then the appeal form when I was denied. That’s also what was going through my head as I walked into the building to meet my attorney for the first time and stand before a judge to plead my case about just how disabled I am and why I should be approved and NOT denied.

If it were up to me I’d say ‘because every doctor is making me… you think I WANT to do this?’ but I had a feeling that might not be the approach to take. And considering I had already been denied, something that still baffles me, getting snotty with a judge is probably not in my best interest. The last time I got in trouble with a judge was the most HUMILIATING experience of my reporting career and one I will NEVER EVER FORGET (I thought I turned my work cell to vibrate but instead I turned it on HIGH and my news desk called me during a case and the judge threw me out of the courtroom) I’ve learned you just don’t mess with judges. It’s like getting pulled over. Be NICE TO THE POLICEMAN and say ‘sir’ or ‘ma’am’ and let them have their power trip if they must. Even if they stamp DENIED on your forehead.

Yes. Denied. Because, as I was told, apparently everyone is denied on the first try for SSDi. It’s just how it works.

As part of my private insurance disability benefits I’m required to file for SSDi and appeal and appeal and appeal with lawyers THEY give me to appeal and appeal and appeal. Actually I don’t know how many times I’m required to appeal but they did give me the attorney and I have a feeling they’d keep appealing until the cows came home. Because they don’t want to pay my check. They made that painfully clear when it took them 9 months to process my claim and investigate if, in fact, I was actually disabled. Never mind that we’d sought the help of every doctor in a 100 mile radius and they all came to the same conclusion. But I digress…back to walking into the building …

I parked, took the elevator up, and walked the hallway into a room where there was an armed officer at a table asking for my name and my ID before I was even to the desk.

Ok. Already NOT what I was expecting. But OK. As I fumbled for my ID and gave him my name I took a quick glance around the run-down room. Chairs were spread out in a U-shape and various other people with canes and wheelchairs were seated. Some with what appeared to be attorneys. Others with family members and friends. There was a single folding table that seemed to hold an old school pitcher of coffee or water, some styrofoam cups, and I swear to God a framed poster of George Takei and another Star Trek uniformed person with some slogan about Social Security going boldly where no one had gone before.

I did a double take. But…George Takei…that had to be a good omen.

On another wall there was a window, as if in a doctor’s waiting room, where another security type officer sat and above him were two framed photos. One of President Obama and one of Vice President Biden. Had the nice man at the table not immediately told me I was required to shut off my phone or leave (and given my history with judges I had no problem sliding the screen to OFF) I would have been tweeting and instagramming and facebooking the HELL out of everything in this room. The photo of President Obama was hung slightly higher than Biden, by the way.

I was told my attorney was already here and in another hearing and would meet me shortly and to please have a seat. After he checked my bag, of course.

It was like being in the DMV/TSA version of a doctor’s waiting room, but more depressing. The chairs were too close together so you could hear attorneys talking to their clients about their chances. Most were not good.

We’ll have to prove you aren’t drinking right now Mr. Smith, do you have anything from the treatment center?

I realize it’s a chronic condition but it’s not classified as one under the law yet, well by the AMA, so we might have a battle.

I know it’s been a long time without a check but without those hospital files there’s not much we can do. Are you sure they said they lost them?

I was told the hearing was casual and not to get too dressed up. I was going to be in front of a judge though, so I wasn’t going to show up looking like a slob. Apparently others took that advice very seriously though. One man was in a sweatsuit. A woman in a tank top and jeans. I felt like I was over dressed in my black dress and cardigan. But this was COURT, right?

My attorney, out of breath, sat down next to me after just a few minutes of me staring at my surroundings wondering how I had gotten here. Feeling very, very alone.

I was thankful for the company, even if she was a total stranger.

Let’s see if I can find a conference room so we can talk before she calls us in. I want to go over some bumps we might encounter.

Bumps? Oh great.

There was a sea of doors on one wall I hadn’t noticed when I walked in and surrendered my cell phone to the OFF Gods and we entered one quickly and my just-introduced attorney launched into her ‘solution’ for a date issue on my application and denial and appeal. The whole case hinged on it, apparently.

My whole case hinged on a DATE issue. How could that be? Shouldn’t my case hinge on something important like say, if I am or am not DISABLED? Why would a date matter? I was already confused.

She explained my last date worked wasn’t going to cut it because I had the nerve to try and go back to work several times once I had initially gotten sick and they started plucking organs from me. So in reality, that second surgery date should be my last date worked and everything after should be considered a ‘failed work attempt.’

Ummmm…sure. I mean, that is what happened. I have no idea why it matters that we word it that way other than it matters within the rules and law of the SSDi system. Which is part of the problem here…the SSDi system.

I took my first job and paid my first taxes as a senior in high school when I made enough money that summer before college working at a children’s clothing store. I’ve filed taxes and paid into the system every year since, even when not working from 2003-2007 at a ‘steady’ job while being a ‘homemaker’ as the tax returns say, I still contributed with some freelance gigs.

All I know is they always take out money for Social Security. Always. So from 1993-on I’ve contributed. But I’m a mooch if you ask the Right wing. Me wanting those ‘entitlements’ and all. And the dates of when I got sick apparently matter greatly. And the fact that I tried to go back to work several times apparently matter greatly and could screw me.

Then a knock came at the door and a woman said ‘she wants you now…she said you need to catch a plane or something? Anyway she moved you up so let’s go.’

Plane? What? Who? Wait…we haven’t even talked about everything, I JUST MET MY LAWYER, I have NO IDEA WHAT IS HAPPENING YET…and off they started down the long hallway with me slowly waddling behind trying to keep my cool.

My lawyer who, 300 feet in front of me realizes I’m lagging behind, suddenly slows down and says, ‘Oh, I’m so sorry, take your time…it’s ok…this is about you, really. I’m not sure why she’s calling us in early, I had mentioned to the guard I had a flight later but it’s not until 2 so she really doesn’t need to see us early, but…’

…and the door opened and there was a long table with microphones and two people already seated and up on the high risen table I swear to you Judge Judy but with more make up and bigger hair.

Oh holy shit.

I tried to assess the situation as quickly as I could to determine what was going on and what I needed to do. The judge was looking at her computer and she had a very sparklely broach on her black robe. There was a gray haired gentleman, he must be the medical expert at one end of the table in front of a microphone and he made eye contact with me and smiled. He seemed nice…but had he read my WHOLE file or just those early dates? I smiled back.

At the other end was a white haired woman who looked like she could be a very sweet Aunt to me. She must be the vocational expert. She smiled at me very warmly. I wanted to hug her for some reason. Like, it was as if she was reading my mind when I walked in and could see the fear behind my eyes and was telling me through her smile not to freak out. Mind you I was told both of these people would probably be on the phone in a conference call, in our conference room.

This was no conference room and they were here to testify about me, in front of a Judge who did not smile at all.

Who has the flight?

My lawyer explained she did but it was later and she had only mentioned it in passing and her honor really didn’t need to accommodate her, we could wait.

Oh I thought it was your client.

No, not me your honor.

No way in I’m letting her think it’s ME and I’m trying to get special treatment ALREADY. HELL NO. But that was all I said. I wanted to say more…

I was told to take a seat in the middle and my attorney sat next to me. Knowing court protocol I didn’t want to sit until the judge told me so I sort of stood by my chair, half DYING to sit because my body hurt like hell with no pain pills (I had to drive myself that day) and was waiting for the judge to tell us to sit. I could tell my attorney was waiting to be told to sit too…

Finally we were told to take our seats and then I was asked to state my full name.

I spoke into the microphone.

Erin Kotecki Vest

I noticed the stenographer next to the judge but I couldn’t really see her face. She was hidden by the height of the riser and table and my eyes darting around still trying to get the layout of everything.

I kept glancing at both experts. The medical expert was glancing at his handwritten notes. I could see some of what was written on the top. CTD, HYPERTENSION, AUTOIMMUNE. I wanted to try and read more …

Stand and raise your right hand…we all stood.

Do you swear to tell the truth, the whole truth, and nothing but the truth…

I do

No ‘so help me God….’ awesome. It’s the little things that make me happy.

I glanced at the vocational expert. She was smiling at me still. I wanted to go sit by her. She was so way less scary.

There was some legal stuff entered into the official record and the judge asked if she had anything before we began. My attorney began with the motion to amend my ‘last work date’ to June 24th, 2010 and then launched into her legal defense of my failed work attempts.

The judge asked the medical expert if my conditions in question were present on June 24th, 2010 causing my current disability.

He said yes.

My heart leapt. This might be ok. Maybe?

The judge appeared to agree to the date change, it was all rather odd, she didn’t object she didn’t really affirm but she did allow the motion and then we moved forward. But there was no ‘motion agreed to gavel slam’ kinda thing so I was left slightly wondering but not, as all appearances were she agreed to the motion. Which my attorney agreed ‘basically’ happened later when we recapped after leaving the hearing.

The judge asked me a few questions. Mostly about how I spent my days. I told her I was at the doctor’s a lot, getting IV infusions. I get the kids to school on days I don’t carpool, I watch tv and am on my computer. She asked if I exercised. I told her that Dr. Caro had just this week cleared me to try warm water physical therapy and I would be starting that as soon as I found someone to do warm water physical therapy. She asked if I grocery shopped. I told her about how Aaron does the major shopping for the week every Sunday. She asked if I cooked the meals. I told her sometimes, but a lot of easy things I can do like crockpot or premade things, but I do cook depending on if it’s a good day or bad. She asked if I cleaned the house. I told her we had cleaning people once every two weeks. But I did light pick up, but the kids help.

Then she moved on to the medical expert. And I thought…but wait…you didn’t ask me about how I feel. About my story. About what is wrong with me…wait… I have SO MUCH TO SAY.

She asked the medical expert in his opinion what my major diagnosis was- if any-

Connective Tissue Disorder

AutoImmune Disease

Hypertension

Hyperthyroidism

Obesity

Oh. Ouch. Hang on. Where’s Lupus? And the fat is from the prednisone that’s not fair. Where’s raynaud’s and sjogren’s syndrome and RA and the stroke and IBS and colitis and WTF is going on I don’t even HAVE A THYROID ANYMORE and the hypertension is from the pills they are making me take for RA… wait wait wait…

…at this point my head is spinning. I want my lawyer to stop him. He’s not saying what I have. He’s not getting it right.

He says something about me not being able to lift more than 10lbs or climb a ladder. Or stand for long or sit for long. I don’t really hear because my face is all hot and it’s like my head is plugged at this point. Like I’m drowning.

In your opinion is she completely disabled

Yes your honor

Ok wait, it was good he said that. Well, I mean…for the case.

She then turned her attention to the woman I now want to go cry and hug. Who is still smiling at me, thank God. Because right now I am looking at her and looking at my lawyer and wondering if my lawyer is going to SAY ANYTHING, but I’m thinking once the medical expert said I was completely disabled there was no need.

The vocational expert begins to talk as the judge asks her a few questions … she begins with:

Mrs. Vest was a reporter slash anchor

…and suddenly I start to panic again. I haven’t been a report or an anchor since BEFORE JACK WAS BORN…

She says something about in today’s world how you could now say this was ‘light’ work. She’s still smiling this really warm smile though so I’m trying to keep the faith in the woman I want to hug.

She most recently was a social media …and then she starts speaking slower … stra-teeeeee-gist.

#Oh.no.she.has.no.idea.what.a.social.media.strategist.is.or.what.blogging.is.or.what.social.media.is.and.here.is.where.the.wheels.come.off.and.i.am.fucked.

This would equate to a ‘public relations’ type job and would be classified as ‘light’ work as well.

I am now silently SCREAMING at my lawyer to speak up. Please please please tell them I was speaking at conferences. Flying all over the country. Briefing the White House and members of CONGRESS on the state of women online. Please GOD PLEASE tell them I was executive producing web videos with the Pioneer Woman and Macy’s and directing Kyra Sedgewick in NYC with Tropicana and flying to Oklahoma regularly and negotiating contracts with production companies and negotiating appearances with politicians WHICH IS EVEN HARDER and please please SPEAK UP and TELL HER WHAT I USED TO DO PLEASE.

…and in your opinion could the claimant perform any of these duties

No your honor

Could she perform any work in her current state as given by the medical expert

Not in the national economy, no your honor

Wait. That was good she said that too. Well, not that I can’t do those things but…for the case.

‘Do you have anything to add?’ the judge asked, looking at my attorney.

No your honor.

And just like that it was over.

Even if I had a million things to add. A million details about my life and what it used to be and what I want it to be. A million details about how much it hurts and how I will and am getting better, but I’m just not there yet. A million details about how hard it is on my family and how I want to take this burden away from them so badly I will do anything, ANYTHING.

Everyone, except the judge, smiled at me. They all wished me luck and the judge remarked that it wouldn’t be her fault if my attorney missed her flight. And we left.

I smiled at everyone as best I could trying to process what just happened. Oddly still wanting to hug the vocational expert. Knowing it was all good for me but knowing it was also very odd and missing so much and not the entire story by such a long shot. Such a very, very long shot.

My attorney took me downstairs away from the hearing room so we could talk. She confirmed it all went very well, which is why she didn’t say anything. With both experts saying I was disabled and could not work and the judge accepting her motion to amend the date she expected a win.

It didn’t feel like a win. But it did. My head was still swimming in everything from the Star Trek poster to the millions of bits of my life that were seemingly meaningless and left on the cutting room floor. Things that I thought were so important. Things I knew I wanted to tell the judge that I wasn’t asked.

I got in my car and left the parking lot and found a place to pull over and call my husband.

I tried to explain what happened and that it was all good. It appears we won the appeal but I have to wait for a letter in the mail and then we’ll know and then we’ll get a packet from Medicare.

Jesus. Medicare. I’m 38. Apparently I’m also obese. THAT is going to stick with me too. It’s ringing in my ears as I type.

I hung up the phone and on the side of Wilshire Boulevard, in front of some lighting store, I sobbed.

I don’t want to be here. My life is not and can not be boiled down into a few questions and a few answers.

And all those people in that sorry waiting room…how much did they get to say? And how many people never even made it to that sorry waiting room. Didn’t know they could appeal. Didn’t have the means to appeal. Weren’t sure how to appeal.

So now I’m waiting for a letter that will declare me disabled. So says the federal government of the United States of America.

But no. This is only temporary. I’m not done yet. In fact, I want a letter declaring me temporarily disabled. So says the federal government of the United States of America.

Every step I take in this journey I have learned more and more about the things that MUST change from health care to how we handle Social Security to how we treat the disabled. No. I’m not done yet.

So let the letter come. Let the packet come. My family needs this. And I will probably sob again. But understand all this does is make me fight harder.

If I can educate Congress and the White House about Lupus you had better believe I will now change the face of Social Security. Well, apparently me and George Takei.

Filed Under: #suckit, #SUCKITLupus, Feeling YaYa, Stepford Crazies

International Day of the Girl

October 11, 2013 by Queen of Spain 1 Comment

My children still have a hard time wrapping their heads around the idea some kids have no access to school.

I remind them of this every time they dare moan or complain as we head with their backpacks to the car.

My children still have a hard time wrapping their heads around the idea children would be shot and victims of attempted assassinations in order to keep girls from attending school.

I remind them of this every time they dare complain about homework or math sprints or even waking up in time to heave a healthy breakfast before heading out the door to class.

My daughter, especially, gets a grim and determined look on her face…her eyes even darker than usual…when she talks of Malala, her heroine.

And let me tell you, my eight-year old has few heroes. She’s not easy to impress. But Malala has made an impression on her young life that can not be taken away. Which is why she spent her 2nd grade project educating her class on exactly who this young woman is and why her fellow students needed to know about her.

Yes, 2nd grade.

We’ve spent many hours in our home discussing how women are treated across the world, including the United States, with our children. We’ve chosen, as a family, to support several organizations that we believe directly help.

On this International Day of the Girl, focusing on education, we’d be honored if you checked out these organizations and discussed them with your children and why they are so important:

MalalaFund.org

MothersFightingforOthers

MayanFamilies

Education is a right for all, not just the privileged few. And certainly not just for males.

Filed Under: Feeling YaYa

Because Sometimes You Just Need to Get Goofy

October 7, 2013 by Queen of Spain Leave a Comment

Maybe it’s the government shut down. Maybe it’s my raging anger at the GOP. Maybe the pain from Lupus has finally caught up with my brain and sent me over the edge…

Whatever the reason, it’s time I kept my rants and health advocacy and politics and how that all ties into parenting right here on this blog and launch another for something a bit more…Magical.

You will find something entirely different from what you usually read here and a place where I can keep a smile on my face instead of wanting to scream and pull all of my hair out over gridlock in DC and teaching my children how to behave better than politicians.

Come visit As Dreamers Do.

Filed Under: Feeling YaYa, Stepford Crazies

Good Luck, Disney

September 23, 2013 by Queen of Spain 7 Comments

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.

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.

Filed Under: Feeling YaYa, Stepford Crazies

Of Leeches and Heroes

September 19, 2013 by Queen of Spain Leave a Comment

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.

Filed Under: #suckit, #SUCKITLupus, Auto-Immune Menu, Feeling YaYa

Today is That Day

September 11, 2013 by Queen of Spain Leave a Comment

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.

Filed Under: #suckit, Feeling YaYa

Foam Fingers vs. Peanut Butter and Jelly

August 26, 2013 by Queen of Spain 2 Comments

My daughter tries to show me she’s a “big girl” all the time. She makes her own peanut butter and jelly sandwiches. Gets herself dressed, even when her choices may not match. She even tests just how much she can do on her own by trying things that she may not, exactly, be ready for…

Last night Miley Cyrus tried to show the world she’s a “big girl” too. But instead of sweetly accomplishing the culinary pb&j, she masturbated with a foam finger on stage with teddy bears and Robin Thicke.

We get it Miley, you’re not a little girl anymore. Unfortunately Ms. Cyrus you also showed us you aren’t a woman yet. At least not a responsible one.

I’m all for music and art shocking and pushing limits. But I don’t think that’s what Miley was trying to accomplish at the MTV Video Music Awards. She was no Madonna rolling around in a wedding dress, shedding her virginity. She was no Lady Gaga showing off her avant-garde art schooling.

She simply looked like a little girl trying very hard to show us she was a big girl. Just like my daughter tries to show me every single day. The difference?

My daughter is eight.

The good news here is we all can relate. Remember when you were younger and you so desperately wanted to be seen and taken seriously and NOT treated like you were, well, 20? Miley really wants us to know she’s to be taken seriously as a “big girl” and not a little kid…certainly not one who could possibly be associated with Disney or anything young and pure.

Unfortunately she failed miserably to show us she can be a responsible “big girl.”

We get it, we get it…you’re not a little kid anymore. But Miley hun, you could have just as easily of shown us that by rocking out in a sexy outfit, complete with teddy bears, and by throwing in just a touch of class.

Instead you used that foam finger to stroke your vagina and give the middle finger to all the kids who looked to you as a role model. You made it very clear you do not want that title any longer. And as a parent, no worries there, you’re not getting it.

Luckily in my house we don’t idolize celebrities anyway. However we do enjoy being entertained by good actors and singers. Notice I said good actors and singers. After last night’s performance I’m not sure you fit in that category either. But hey, you are young. And as we all tried to show the world we were “big girls” we’ve screwed up a bit. So I’m willing to give you another chance. After all, the world gave me more chances when I was trying very hard to be taken seriously in my early 20’s.

Just take it from those of us who have been there- if you want to be taken seriously a foam finger and long tongue aren’t your ticket to adulthood. Unless that adulthood consists of a trailer park, a stripper pole, maybe an abusive partner and a few addictions. Is that what you want? Is that what you want the world to see you as? The former Disney star turned white-trash entertainer, doing shows at the local watering hole while dirty old men stick dollars in your teddy bear thong? Is that “big girl” Miley’s dream?

Next time, stick with pb&j sandwiches and mismatched clothes.

Filed Under: Feeling YaYa, Holding Court, Princess Peanut, Stepford Crazies