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Mrs. Kotecki Vest Boldly Goes to Court

October 26, 2013 by 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.
No really, this was at my hearing
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

Living in Awesometown

October 22, 2013 by 23 Comments

I am sure it will come as a surprise to absolutely no one that I’d love to run for public office some day. It was always on the bucket list but life threw some curve balls at me that didn’t exactly fit into my career plans and well…here we are.

Recently a school board position became unexpectedly open and I briefly considered throwing my hat in the ring. Briefly because once sanity hit, and the usual pain I wake up with, along with my grueling treatment schedule and basically just juggling trying to stay alive…the husband and I figured maybe this wasn’t the best time to add the stress of trying to care for the educational welfare of the valley’s kids.

1st day of school 2013

I also had to think about the type of person I would want on the school board and currently *I* didn’t fit my own criteria. I wasn’t attending meetings due to my health, I wasn’t interacting with as many school administrators as I’d like, nor was I up to speed as much as I’d like on the budget or ‘common core’ or new building concerns. Sure, I was way ahead of the average parent, but that wasn’t and isn’t good enough.

Granted I’d been reading everything I could get my hands on, even old meeting notes from years and years ago. Yet still, I knew I wasn’t ready. I expect a lot of our elected officials. Which brings me to another issue I had trouble with- this would be an appointment, not an election. Something that also didn’t sit right with me.

I also had this nagging feeling that while I was being as partisan as possible since becoming disabled, I had very little right to throw myself into a position that required as much nonpartisanship as one could muster while maintaining their sense of self.

For those who are unaware I spent my early career completely nonpartisan as a traditional journalist. No one would have ever have known how I felt, voted, or leaned on any given story I ever anchored, reported, or wrote. Six Golden Mics testify to that fact and I am very proud of them.

When I left that world for blogging, I had a hard time transitioning and went from screaming my opinion to whispering it to finally finding my voice.

As it turns out, I found it just in time to stifle it again in order to take the helm of running 2008 election coverage which required me to work with both side of the aisle and every candidate on the Presidential ticket. That required me to build bridges with the RNC and the beyond which resulted in, what I am very proud to say, was stellar coverage that went far beyond election day and into the health care battle where I worked to connect women bloggers with legislators intimately. If you wanted to ask then Speaker Pelosi a question, I made that happen. If you wanted to talk to Congresswoman McMorris Rodgers, I made that happen. That was my job and I was damn good at it- and damn good at making sure that same balance of voices-left, right, center-were heard on the site as well. Do you have any idea how hard it was to manage those who shall remain name-less (but feel free to go look them up) who went on to write for Breitbart, Huffington Post, Townhall, etc. all on in one political section? I should have gotten hazard pay…and I’ll leave it at that.

So as I sat thinking about running for a nonpartisan position, I just couldn’t help but think, ethically, now wasn’t the time. Nope. I’d have to spend more time working on getting through this Affordable Care Act battle, the many LGBT battles, including the current one in our schools that thankfully the Governor took action and signed into law, among many other things before I was ready to take on a position that required me to represent a district with some diversity. I say ‘some’ because let’s face it, the Santa Clarita Valley still has a ways to go when it comes to the whole ‘white flight’ bedroom community. We’re getting better. The demo is changing. But we’re not exactly there yet. And I have too many important battles I believe need my voice on this side right now, where I am making a difference.

Now of course I would run on an agenda, and that agenda would lean left. However I firmly believe that once you are elected you are representing everyone in your district. It’s one of the things I admire most about President Obama, and one of the things that drives me the most insane about him. I wish he’d only govern with Progressives in mind, but he doesn’t. He governs with the entire country in mind. Something I would hope to do if ever elected to office. Do his policies lean left? Yes. But does he make an effort to bring everyone to the table and even include solutions from the other side…always. (And as I see conservative heads exploding as they read that…I will give you one example just to get you going: that mandate you hate so much in Obamacare? It was compromise starting point from the President to make conservatives happy because it came directly from the Heritage Foundation and Romneycare. It was the HERITAGE MANDATE, just saying…)

So where is all this going you’re wondering? Well I’ve been meddling on Facebook in some local groups. Mostly because I was following some local reporters and some friends, which lead me to mingling with local elected officials.

Currently the President of the Hart District is Joe Messina. He actually has a right-wing, radio talk show in which he regularly features people like Brad Dacus of the Pacific Justice Institute (labeled a hate group by the Southern Poverty Law Center) and apparently this week he’s talking to Newt Gingrich’s wife. I can’t make this stuff up. And I can’t imagine what a student who even slightly pays attention to the board must think.

I bet the LGBT students of the Hart district must really get all warm and fuzzy when they read the President’s blog and it says (and for context- he’s speaking about a study he fails to link to claiming adolescence lasts longer and for argument’s sake pretending he agrees with the findings), “Why do we let, 7, 9, or 15 year olds decide they are gay, lesbian, or transgender? How do they make that kind of life-altering decision when their brain, according to the experts, isn’t capable of making that decision yet…If “children” ages 18 through 25 do not have sufficient brain development to make career decisions and live independently, how can children younger than that make life-altering decisions regarding sexual orientation and abortion? I doubt there’s enough “science” to explain that one to me!”

The President. Of our school board. This is what he does when he’s not looking out for my kids…he’s on the air acting like he’s the next Rush or Beck and railing against bathrooms being accessed by transgendered youth and he writes things like:

“…A New Hampshire high school graduate and boot camp graduate was barred from wearing his Marine Corps uniform in lieu of the traditional cap and gown. The young man had worked hard to make sure he had his credits done in time to leave early to go to boot camp, pass boot camp and get back for graduation. The school board, in my opinion, made a terrible mistake not allowing him to do so. No reward for his hard work. However, if he was a transvestite, would they have allowed him to dress as a woman, wear the female gown, wig, high heels, and so on? I have seen some graduations where the rainbow colors were worn as a scarf or the gown itself. And this is Equality? How?…It seems that equality is what some people (usually those on the political left) deem it to be and everyone else can, well, go pound sand!”

So you can imagine Messina and I don’t exactly see eye to eye on…well… anything. Awhile back I attempted to meet with him over tea and coffee to discuss the divisiveness I saw coming from his role as a pundit and board President and attempted to offer solutions. He was cordial. I was cordial. I made him promise to think of ALL the kids in his district when moving forward, he agreed.

Months later, I not only feel were my solutions entirely ignored but I now feel they are openly mocked. But he’s a white, Christian, Republican in a Buck McKeon town…he knows he has the advantage. Plus, everyone talks about how they just love him. Yup, they say…oh no matter what hateful rhetoric he spews on his daily show he’s such a nice guy and he really votes in the best interests of our kids, Erin! I mean, we can forgive him for being so passionate about what he believes because he gives so much time and energy on the board to the kids.

Yup. All for the kids. Please, take a look at his radio show’s Facebook page too. It’s ok, it’s all for the kids and he’s really a nice guy. Notice it has a No Bullying sign on the top. The irony, it burns.

As a parent in the district and as a someone looking to be healthy enough to one day run for office I just couldn’t let go a recent back and forth where he also took to Facebook to write things about me that are not true. Now, I get into political debates with people all over the web all the time. You have all seen me do this on twitter, on facebook, on my blog…but I can’t say I’ve ever gotten into it with the President of my local school board who then went on to lie about me.

Messina said, and I quote: “Erin – We can do this all day, you find one, ill find one, and so on.. Your rant about how Atheists are smarter than people of faith left out a lot about the ONE article you looked at and how the ATHEISTS who wrote it came to that conclusion. Yup you would make a good trustee with your very open, fair and warm support of all people.”

Now let me make something clear here. There is no ‘rant’ by me about how atheists are smarter than people of faith.

There is a facebook post in where I post a study and I ask the question if the study is ‘junk science’ and a debate takes places, by and large without me as I was dealing with two kids home from school that day. Feel free to read and take a look.

At any point in that thread do I pass any judgement on atheists or religious folk? Do I rant? Do I draw any conclusions other than to lean towards it being junk science?

That is, IF that is what Mr. Messina is referring to…because he then, oddly, accuses me of yet another lie: “…Your blog shows you believe that people of faith have a lower IQ than those who don’t, does that mean you have pity on the kids in school that believe in God? Should they have “SPECIAL” classes to help them out, Why? or Why not?…”

I asked Messina to show me where not only this so called ‘rant’ took place but to also please show me where I have ever said anything like this on my blog or ANY blog I have EVER written for, and I gave him a list from MOMOcrats to BlogHer and beyond. Just in case he wasn’t familiar with all the place I write on the web.

No answer as of yet on the Facebook thread. I have screen shots of the entire conversation which includes much, much more… like the President of the Hart School Board’s solution to the transgender bathroom issue being to put pictures of genitalia on the bathroom/locker room doors and if you match the genitalia, that is where you should enter. When I protested that this would ‘out’ the student his response was “ERIN – Outs the student, doesnt the STUDENT get OUTED when his PENIS is hanging out in the girls locker room.. Try Again!”

…and I’m the one sarcastically being told I would make such a good trustee with my very open, fair and warm support of all people.

Maybe he’s right though and the sarcasm is warranted. Because I really don’t have an open or fair mind when it comes to bullies. A sad point to have to bring up for someone in charge of leading our children. Also for someone who is ‘buddies’ with the aforementioned Dacus who has launched an all out campaign against anti-bullying programs.*

Luckily I won’t be bullied into giving up my aspirations for running for office and certainly not by someone who lies about me. I mean seriously, there are ENOUGH real and totally worthy POLICY issues we disagree on that he could have his pick from, why make something up?

There is no making sense of the senseless, I guess.

I do, however, expect more from the President of my local school board. Back up your claims about me or apologize for lying, retract your statements, and move on. My body may not be ready for a campaign but my mind is already in the fight. And I won’t be the victim of a pre-emptive strike by someone who attacks me with lies simply because he doesn’t like my politics. I don’t like your politics, Mr. Messina, but I’m certainly not going to lie about you to locals in the hopes of what? Turns votes my way in the event we ever run against each other? Sorry, I don’t play that dirty political game.

Luckily the politics in Santa Clarita Valley are changing and I will be less alone as a progressive looking out for everyone in the Valley, not just the status quo.

*I would also like to note all of my claims are backed up with linked sources, something Mr. Messina has yet to do on his blog posts or his facebook posts. 

Filed Under: #suckit, Stepford Crazies

An Open Letter to Judge Judy Sheindlin

October 16, 2013 by 60 Comments

Your Honor,

I just watched your interview on Fox News which aired on October 11, 2013. You also mentioned you don’t read negative mail, so my guess is you may never see this…however my hope is that many will be educated regardless.

First of all my love goes out to your daughter-in-law with Lupus. As you rightly stated, some days I’m sure she can get out of bed and go about her day and others it’s debilitating.

Debilitating was the word you used, not me.

Then you went on to say how (and I’m paraphrasing) we’ve created a society where drug addicts and those with bad backs and those like your daughter-in-law are told ‘not to worry, if you can’t take of yourself we’ll take care of you.’

Apparently in the world of personal responsibility and your new book that you are shilling, you think the government shouldn’t be helping those with debilitating auto-immune disorders. Ones they didn’t ask for, nor did they contract by some irresponsible action of their own.

As someone with a family member with Lupus I would hope that you would be better educated on exactly how it works, but by the way you spoke on television I was unclear. Especially considering you seemed to think Lupus was not a disorder that could possibly render one disabled to the point of needing government assistance. This may be the case for your daughter-in-law. It may be the case for many others with Lupus in varying degrees. However, Lupus is a killer and as you said, debilitating.

It destroys organs.

It causes organ failure.

It causes strokes.

It attacks your own body and causes so much pain you can not get out of bed, shampoo your own hair, or even tie your own shoes.

But here is the real kicker: Lupus is different for everyone. It does not attack one body the same way, because hey…we are all different.

From the Lupus Foundation of America:

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

In my own body, Lupus is currently attacking my blood vessels causing them to be inflamed. As you can imagine this causes much pain from head to toe. We also just found out I have the beginning stages of glaucoma thanks to Lupus. Previously Lupus has caused me to have a stroke, two TIAs, lose my gallbladder, lose part of my colon, lose my uterus, my ovaries, and my cervix.

I undergo bi-weekly treatment via IV infusions three days a week, for 4-6 hours per day. Those are on the weeks I’m just getting my ‘regular’ treatment. Every four months or so I get two extra treatments of a super powerful drug via another IV infusion.

I am on powerful steroids and many other medications that have serious side effects. Some days I’m not sure which is worse, the disorder or the treatment.

As you can imagine, this doesn’t exactly make it easy to work. Which is why I am thankful that in our country, when I was capable of working, I paid into social security as well as private insurance disability benefits. I thought that was also called personal responsibility. According to you, though, I’m avoiding personal responsibility.

I worked as hard as I could for as long as I could, making sure we had savings, and even reaching out to family for help. Then medical debt took over and now we’re doing what many Americans do: paying our bills, living paycheck to paycheck, and thanking all the deities for Obamacare (which as you correctly noted is law) as it will help my family get through this rough time. As someone who makes millions per year and was named to Forbe’s list of highest paid entertainers, I don’t expect you to understand the needs to the average American family. I do, however, expect you to retain compassion regardless of the size of your bank account.

Now I’m not exactly sure why you felt the need to single out Lupus patients as being irresponsible for their disability simply because they follow the law and take out the money they put into these government programs. Lupus patients are already stigmatized enough as it is with so little money having been put into research and educating the public on the pain and suffering we experience.

Our pain is real. Our suffering is real. You are welcome to see my brain MRI showing the stroke, the doctor’s notes and files regarding the inflammation so pervasive in my pelvis the doctor couldn’t believe anything was left and most of all, I’d love for you to talk to my family. Please, sit down with my children, my husband and hear from them the toll it’s taken.

Just as you don’t want to ‘pay for my kids’ I certainly do not want to be sick and out of work. It’s the LAST place anyone with Lupus wishes to be. Shame on you for insinuating we are mere moochers or freeloaders not taking responsibility for ourselves.

I’d give anything to be back at work and healthy. I’d give anything to have my organs inside my body and my brain functioning as it was before the stroke. Lupus is no joke and those with Lupus deserve your praise, not your scorn. We wake up every morning and fight to live. We fight against the odds. I know Lupus patients who are heroes.

As someone who is sworn to uphold the law perhaps you have seen only the law breakers from your bench. Perhaps you have spent so many years handing down sentences to those who try and take advantage of the law that you have forgotten the majority of people are not looking to lie, cheat, and steal their way through life.

Some are just simply hoping to live.

I’m glad there is a safety net for citizens of this great country and I believe we are a great country because we can provide that safety net. You may not like your tax dollars going to me or my family, but I don’t like my tax dollars going to wars I don’t agree with. It is a give and take. I, for one, am much happier giving to those in need.

And let me be clear: those with Lupus may truly be in need. The next time I can’t get out of bed, I will think of you and how you said I was undeserving. The next time yet another doctor gives me yet another diagnosis (last week it was glaucoma) caused by Lupus I will think of you, and how you said I was undeserving. The next time I’m in the hospital by doctor’s orders even though I want nothing more than to go home and be with my family, I will think of you and how you said I was undeserving.

Please educate yourself further on Lupus and perhaps offer your daughter-in-law even more help on those bad days when she can’t manage. Because we hope you never know the pain she and I are feeling on those days and how we’d love nothing more than to be at work instead.

In the meantime, I will proudly collect the disability I worked hard to contribute to and I will proudly stand up for Lupus patients – all 1.5 million of us in the US alone – as they collect their checks as well. Because as you said  ‘not to worry, if you can’t take of yourself we’ll take care of you.’

I don’t want Lupus patients to worry and I WILL help take care of them. THAT is the mark of an incredible nation that puts its people first.

Sincerely,

 

Erin Kotecki Vest

There is a Move On Petition asking Judge Judy to apologize for her remarks regarding Lupus. 

 

Filed Under: #suckit, #SUCKITLupus, Stepford Crazies

There’s a Bounty on My Head in Washington DC

October 15, 2013 by 7 Comments

How much do these people hate me to continue this shut down?

That’s what I keep thinking as Democrats and Republicans continue to squabble over what was supposed to be the budget, but really came down to how much they hate me.

Yes. Me.

I benefit from Obamacare already. As someone who is chronically ill with one of those nasty pre existing conditions, I need those lifetime caps lifted and I need to know I can get insurance if something were to happen to the insurance we have now.

But others out there seem to think that not only do I NOT need these things, they are so sure of it and so angry about it and so worked up over all of us getting insurance they’ve waged war and shut down the government in protest.

They are calling it a government slimdown. You know, showing us all the things we can truly live without if we’d only work a little harder and try.

My da

And all I can think is man…they really hate me. They really, truly, hate me. They hate people like me who are signing up for coverage as I type this. Buying insurance for their families or their small businesses so they no longer have to worry about cutting their pills in half to make them last longer. So they no longer have to go to the ER for that cough that they never treated because they didn’t have a regular doctor and that cough turned into a fever and that fever into pneumonia.

They hate us because we want insurance. Affordable insurance that we purchase ourselves. Sure, some of us might get some help from the government in buying that insurance if we need it, and some of us might not, but at least we can’t be turned away because we have Lupus or cancer or because one of our kids has asthma or allergies.

They hate us so much they even call us names. Just this week I was called a Welfare Queen, a bitch who sucks the government tit, and I was called the reason our great nation is drowning in debt.

Never mind I currently don’t take any government assistance. I do have a hearing next week with Social Security disability. They’ve denied me and my private insurance disability has provided attorneys to fight with an appeal. Why? My guess is the private insurance doesn’t want to pay my disability, they would much rather Social Security foot the bill. It’s part of my contract with the private insurance that they take on this fight for me so I don’t have much choice in the matter. But I digress.

I’m hated because I was a functioning, contributing member of society who got sick. Very sick. I did what any normal American would do…went to doctors, got many tests performed on me, and paid all the bills that came our way from every doctor and every lab and every hospital. Yes, we have insurance. Good insurance. But you see, the bills…they keep coming.

Soon the savings was gone. Then we had to start using credit cards to pay the bills. Then we had to talk to family for help. Then we talked to the bank. Then we talked the government and the bank about the HAMP mortgage re-fi program for people like us who had never been late on a payment but were worried we might be because of all the medical bills that still have not stopped.

We did what those men in suits reciting Dr. Seuss expected us to do, we took responsibility for ourselves. We continued to pay our bills. We STILL pay our bills, but again, they keep coming. That’s the tricky part about getting sick nowadays. You can prepare and prepare and prepare just like you are supposed to, but one major illness and financial ruin is no longer something that happens to someone else. The bills don’t ever stop, and your income goes DOWN not up.

But they don’t care if I’m sick and undergoing treatment. They don’t care if we continue to pay our bills while taking advantage of the provisions in Obamacare and shopping the exchanges to see if we can’t find a way to lower our costs. No…they hate me, and everyone like me.

Have cancer? They hate you. Manage to get in a car wreck? Oh they hate you too. To them you are nothing but a freeloader. A moocher. Someone who, apparently, should have had the MILLIONS they have stashed away for when they get in that fender bender that throws out their back and makes it impossible for them to work.

So I sit and wonder why they hate us so much. I realize we argue over the big issues like abortion and same-sex marriage. But is that enough to leave me without coverage? Without protection? Without doctors and medicine?

In essence: are our political differences enough that you would leave others to die?

I think the past two weeks have given us the answer.

Yes. Yes they would leave you to die. Survival of the fittest is their motto and we don’t fit the bill.

Of course, many in their own families don’t fit the bill but they will tell you they planned better.

Of course, many in their own families suffer with illnesses like we do but they will tell you they changed their lives and made sacrifices and worked harder than we did. Which means they deserve to live, and we do not.

No, I’m not sure why they can’t see that not everyone can plan as they can. Not everyone has millions and not everyone can dig their way out of medical debit and not everyone has family to fall back on and not everyone has anyone for support.

But that’s not their problem. In fact, they’d like you to simply go away. Head to ‘your closest church’ is what I was told, and there I would find ‘whatever I needed.’ Today I was at my closest church for my daughter’s basketball game. Out of curiosity I asked what was available for a family in a situation like ours.

I was told they had a lost and found we could go through and winter coats should be coming in soon.

That’s not exactly the blood plasma and chemo I use to keep me going.

Perhaps they don’t realize that most of the chronically ill can’t drive. They rely on things like Meals on Wheels and WIC, but those that hate us were too busy shutting down those programs while making sure WWII Vets could look at a memorial. Never mind that Mom can’t get out of bed because her pills have run out and she would take her youngest to preschool but the local Head Start program is also shut down, because those types of kids don’t really need an education anyway, right?

That’s how much they hate us.

Which brings me back to wondering why. What is it that makes them hate us so much they would push our government to the brink of default, push 800-thousand of us out of work and call it ‘fat trimming,’ ignore every economist on earth screaming what will happen globally if the US defaults, but more importantly what will happens to their OWN PEOPLE. Social Security checks. Small business loans. Veteran benefits. Clinical trials of drugs that may SAVE LIVES.

Why do they hate me so much? Why do they hate you so much? Why do they want us to die? Why don’t they care?

Is it money? They say money is the root of all evil…so is it money? Is there a sinister plan that nets them millions once this is all over?

Are we worth millions in cash to them? Millions of suffering or even dead Americans = millions in cash.

I know I don’t agree politically with those on the right. I know I can argue like hell to get my point across. But never, EVER, would I wish them ill. Would I wish them the hell I am going through. Would I wish them dead. And never would I VOTE to show them just how much I want them out of my life. I would never vote to demand their services, that in some cases sustain their lives, be terminated.

I don’t know why they want me dead, but there seems to be a bounty on my head in DC and I thank the President and the Democrats for fighting for my right to live.

Filed Under: #suckit, #SUCKITLupus

International Day of the Girl

October 11, 2013 by 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 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.

Just because

Filed Under: Feeling YaYa, Stepford Crazies

Can Anyone Save The House GOP?

October 1, 2013 by 4 Comments

You saved us. 

That’s what my son told White House staff gathered around the table as he sat on my lap.

No really, you saved us.

My son, who hadn’t said a word for nearly the entire meeting, even though he had confided in me he really wanted to tell them all about how his Mom has Lupus and how great it was they were helping more people get treatment and medicine and see doctors.

Thank you for saving us.

My son, sitting on my lap in the West Wing, his little sister by his side. Both having devoured packages of White House m&m’s just minutes prior, had the entire room welling up with just those words.

It is all I can think of now as I watch the news and I see these men and women who call themselves representatives of the people. All I can think of is my son, in his suit bought just for the occasion, driving home the importance of Obamacare in a way only the innocence of a chid can.

And this guy always a chip off the old Daddy block

The Affordable Care Act is a law passed by Congress, signed by the President, held up by the Supreme Court, and even fought over during the 2012 election where President Obama, once again, came out on top. Yet still, these men and women who call themselves patriots have rather unpatriotically brought the fight back up again, refusing to accept their defeat and refusing to understand that right now people can go to HealthCare.gov and enroll in an insurance plan.

They shut down the government yet stopped nothing.

Right now I’m looking at my husband’s paycheck to see exactly what gets taken out to pay for my astronomical medical care and I’m comparison shopping at HealthCare.gov – considering our family’s options and what is best for us. There is an Anthem Blue Cross plan that pays 90/10 instead of the current 80/20 we have with Aetna. There is a HealthNet plan that covers my very expensive treatments with copays instead of the huge deductible I pay every January now. Lots of things to look over and consider that potentially could save us even more money.

I say even more money because ObamaCare has already brought us help. People don’t understand the benefits yet, and that’s really what this fight is all about. You’ve seen my bills. I’ve tweeted them time and time again and explained how our family has used ACA already. But what about you? Sally Kohn wrote a great piece for you- Five Reasons Why Americans Already Love ObamaCare. Did you know those things?

Listen, you may not like that 48 million Americans now have access to health care. You may not like that they can shop and insurance companies can compete for their business. You many not like that President Obama has done something amazing and it WILL be life-changing for those like me with chronic illnesses. Except we’re the lucky ones. So many are like me in disorder only.

My family has the luxury of comparison shopping on the exchanges while others have no insurance and don’t even make enough to pay for the meds the ER doc prescribed the last time they got so bad they broke down and went to the hospital. Now they CAN- based on their income they can go to HealthCare.gov and enroll now and it might be FREE or under $100.

That changes everything and those Republicans in the House know it…they KNOW IT.

It’s just a shame they don’t care. 

Perhaps if they were in a room with my family, sitting around a big office table, hearing about how hard it is to live with Lupus and what it does to your life and your kids’ lives…and then to suddenly hear the sincere thanks from a 10-year old child. Perhaps then they might let their hearts grow a bit and take off the attached riders and pass a REAL bill. Not one that tricks Americans into thinking they don’t even NEED health insurance and should just pay the fine. What sort of horrible advice is that? All because they believe this is government run health care? Last I checked Anthem Blue Cross and Aetna and HealthNet weren’t my government. All the government has done is put in place some rules that should have always been there- like the one where they can’t find really stupid reasons to kick you off their policy simply because you are sick and costing them money…we like that one at our house- and put all these companies together in one spot to compete for your business. Sounds pretty damn American to me.

But what’s even more American is a 10-year old boy finding his voice in a room full of adults simply to say thank you because he knew, at that very moment, it was important to express that his family needs ObamaCare and he was grateful to have his Mom.

That’s how the President knows he’s doing the right thing. That’s why he won’t give in and neither will we.

Thank you, Mr. President for saving us and to your staff for staying strong.

As for the House GOP…perhaps a meeting is in order between you all and my son. I’d let my eight-year old daughter tag along but you don’t want her there, trust me. She’s not nearly as sensitive and empathetic as her brother.

She’d just kick your asses.

#allhailhala giving Congress hell in her purple lupus scarf

Filed Under: #suckit, #SUCKITLupus, Count Waffles, Stepford Crazies