Stepford Crazies

There is Something Special About 11

March 24, 2014 by Queen of Spain 2 Comments

Eleven years ago my husband and I began the greatest journey of our lives. Great seems like the wrong word to describe parenthood, because it doesn’t nearly encompass the ridiculousness of what it means to be someone’s mother or father.

Ridiculous might actually be more appropriate.

When this boy came into our lives, everything changed.

I didn’t know the passion with which I threw myself into my work, my projects, my relationships, my marriage, my family…would be entirely eclipsed by this tiny human who would squeeze my finger and look into my eyes as he nursed. Owning me.

It was ridiculous. It still is ridiculous.

Now that he is becoming, well, himself, I’m learning to let him take over his own life. The life we gave him, the life we help guide as he learns about the world. The good. The bad. The wonder with which he sees everything.

He is so much braver than I am and so much stronger. His heart is so pure- and I know people tend to say that about children a lot-but his heart is truly so pure and loving that he weeps with joy when the sky is full of clouds and feels total elation that is contagious when seeing stars. He makes you look out the window of your everyday car in your everyday life and actually watch the mountains go by and the sun set below the horizon. And then he’ll say something so simple it hurts.

Mom, isn’t the world just beautiful?

His current obsession is flight. Planes. Shuttles. He’s thrown himself into learning everything about how a human might reach the heavens so he can witness Earth’s beauty first hand.

So naturally we bought him a flying lesson for his birthday.

The intensity and fierceness with which I wanted to stop him nearly overwhelmed me. But after ELEVEN YEARS I finally am working on becoming the mother I had always hoped I would be, at least, in part.

I didn’t tell him I was petrified something would go wrong. I didn’t show my nerves. I simply continued to encourage his dream. I wanted him to know I was behind him 110% if this is what he wanted.

Over a decade of parenting and I’m still trying to figure this whole Mom thing out.

When my son arrived in this world, after weeks and weeks and weeks of bed rest…monitor strapped to my swollen belly, sending my preterm contractions to a nurse over an old school modem, we were just happy he was healthy. Then, like every mother before me, I worried and fretted about milestones and motor skills.

Keeping our kids safe seems to be forever on the mind. Protecting.

Yet at the same time, we tell them they can be anything. They can do anything. If they find something they love we will happily help them achieve their goals.

My son wants to fly. In a way, he always has been flying. He’s done it in his mind and daydreams a million times. I’ve watched him. I can see the wheels spinning as he runs through our house flapping his arms.

His first goal as a Kindergartner was to retrieve the rovers from Mars. We wore out one ‘Roving Mars’ DVD and had to buy another before he was reading or writing. A documentary.

It just never occurred to this mother he would need to leave the safety of the ground.

He’s smarter than I am. He has a plan that involves learning to be a pilot young so he can get it out of the way and amass his fortune in order to fund his other obsessions. Inventing his dreamworld filled with creatures and robots and fun. All while making sure Spirit and Opportunity return to Earth not to mention making sure his many hobbies are equally tended to-most of which involve other worlds. Other galaxies. Dark matter, black holes, the beyond.

He figured out long ago he’d need to take this step and didn’t even ask if he could, knowing Mom and Dad would be there to support his dreams.

I adore this child and am glad he’s challenged me to be a better person, a less selfish woman, more of an adventurer, less of a panicked mother.

I always knew he would touch the stars, I just didn’t realize it would take everything in me to let go in order for him to spread his wings and fly.

Happy Birthday Jack.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

I Was Called “Bossy” & What They Meant Was “Bitch”

March 11, 2014 by Queen of Spain 7 Comments

Here is why I’m loving the #BanBossy campaign:

Not because I think banning a word is the end game or point. Not because we shouldn’t “reclaim” the word “bossy” and make it a positive, leadership-affirming word for girls. No, I am loving the campaign because when I was a kid and I was called bossy…they really meant “bitch.”

)

I am not the biggest fan of the entire Lean In movement (another blog post for another time) nor do I think you can solve the world’s problems with “banning” anything. But if we can change the narrative on “Bossy” if we can TALK more about why girls are called “Bossy” and boys aren’t…if this means #BanBossy gets it started than WHOO HOO.

Think about it, #BanBossy is already generating a ton of social media buzz. A ton of talk. A ton of discussion about girls and leadership. That means IT IS WORKING.

Now some of you don’t have the negative connotation that I do with the word “Bossy.” I get that.

However, I do. This speaks to me, directly.

Bossy was never meant as a compliment. It was never meant as one of list of things I was, and still am, that anyone would put in the “positive” pile in the pro and con sheet of my life.

But I was just doing what the boys did. I was simply taking charge, just like the boys were. And for those who would argue “Well, Erin, maybe you weren’t nice.” Were the boys “nice” when they told everyone what to do? And if they were mean, were they called anything even close to “bossy” or were they heralded as a “strong leader that didn’t take anyone’s shit?”

Exactly.

I’m raising a son and a daughter and my husband and I try VERY hard not to pigeon hole them with gender stereotypes, but sometimes things slip out. For instance the other day I told my daughter to “act like a lady.”

What the hell does that even mean? I can’t even remember what she was doing, and I quickly backtracked and talked to both of my kids about what I had said.

Which is just another reason why I think the #BanBossy campaign is exactly what we need, because I know when you call me Bossy, you really mean Bitch. And I’ll be damned if you are going to call my strong, independent daughter a bitch.

Filed Under: #suckit, Feeling YaYa, Stepford Crazies

My Son, the Filmmaker

March 8, 2014 by Queen of Spain

There may not have been a red carpet, but last night my son premiered his first (for public consumption) animated short.

I am very proud of his work, as he is 10-years old and entirely self-taught. He wrote, directed, animated, shot, acted…set design, you name it… all of it…for this witty and fun stop-motion extravaganza.

The 4th and 5th graders all showed their shorts to an audience packed with parents, grandparents, siblings, friends, and family at the Shakespeare Theatre of our school.

You really haven’t lived until you’ve spent two hours watching the imagination of kids shown on big screens- there were monsters, lots of monsters. Cats with laser eyes. Lego men and women who seemed to lose their heads a lot. Barbies being mean to each other and eventually making nice. And of course, the story of Bill.

Awesome job by all!

Filed Under: Feeling YaYa, Stepford Crazies

Wordless Christmas

December 26, 2013 by Queen of Spain 1 Comment

I’ve been thinking a lot about happiness lately. What makes people happy…how to make myself happy…how to make others happy. If only we could capture that Christmas morning feeling every day.

Enjoy as my children come down the stairs on Christmas morning 2013. It needs no words.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

The End.

December 15, 2013 by Queen of Spain 15 Comments

I have this need to make it seem like I’m not sick, even though I am.

I got the letter in the mail this week from our long-term disability company once again stating I am completely disabled. It says something along the lines of me not being able to do any sort of job. At all. Of course this made me feel like dirt so I threw myself into finals. You know, finals…because I decided being entirely disabled and incapable of any sort of job, I would try to go back to school. Because that makes sense.

I also thought that because it was online and only part-time I would skip telling Michigan State University that I was disabled, because I wouldn’t need their services.

A few weeks into classes I suffered my first flare. A few more months my second. And at the end of the semester I had a bout with MRSA. For those who don’t know that’s a rather deadly staph infection that tends to kill people like me on a fairly regular basis.

I had home health care daily, a PICC line in my right upper arm, and IV antibiotics on a pump that I got to carry around in what I can only call a fanny pack. I managed to keep up fairly well with my Anthropology class. It was a two credit course so the reading wasn’t too intensive and I had time to work through the many quizzes.

My history class was another story. Each Thursday I had a paper due and our final was, essentially, a very large paper worth 30% of our grade. Both Professors graded on a curve and for awhile I was leading the pack. Two flares and one infection that required a nurse at my home daily later…and I found myself slipping. I could keep up with the reading. But the writing while drugged and with an IV pumping in my arm became more than difficult. And I knew the rules, there are no extensions and late assignments are not tolerated. For any reason. So I didn’t bother to even ask for extensions.

This was my own doing and I thought I would just keep doing my best. Finals are now done and grades will be posted in a few days. I think I’m a high C low B in Anthro…but I’m not even sure I passed History. In order to have passed I would need a flawless final and for the rest of the class to have bombed. I have to admit, I worked my ass off on the final. Going back to notes from the beginning of the semester. Meeting and exceeding every requirement. Or so I thought. But if a glimpse of what I’m seeing in my online forums is right, I may be taking this class over again. Which frankly makes me want to cry.

I tried so hard. I KNEW the material. But I was too proud and stubborn to tell the University I was disabled and therefor could need extensions on assignments if, say, MRSA hit me and I had an IV in my arm for 12 days. Of course I have more than enough doctor’s notes and, hell, even pictures of me with the PICC line in my arm. But I couldn’t even email my professor and tell him because I knew the rules and I felt I should be treated like the rest of the students.

Now I’m worried about my GPA that will sink and upset I didn’t register with the University’s disability department…or whatever it’s called.

The thing is…I still believe I’m going back to work. I still believe I’m getting off these steroids and will look like myself very, very soon. I still believe that everything will be normal again. It’s now been nearly three years since my first surgery and I still believe everything will be like it was or at least close to what it was or even BETTER than what it was and very, very soon.

I’m tired of IV infusions. I’m tired of taking pill after pill. I’m tired of buying plus sized clothing. I’m tired of this ‘new normal’ that includes me needing to tell MSU I’m disabled. I don’t want to tell ANYONE I’m disabled because in my mind it’s temporary and fleeting. It will be OVER SOON. I’m just so sick of waiting for ‘soon.’

Soon has turned into years and I don’t like this life of being disabled. For many reasons that don’t even include the state of my body. I’m doing all I can to keep myself busy and to keep myself feeling as though I’m contributing to life in general. I do what I can for the kids Monday-Friday…but Saturday and Sunday my husband picks up all the slack. Which basically means he does everything.

I had hoped school, even if only part time, would lift my spirits and give me direction. Instead it’s giving me a constant reminder I’m not 19 and I’m certainly not healthy. I can’t really go out and do much. But I have faith this will be over soon. I’m going to get well enough to do all the things I want and then some.

I realize I have been saying that for years now, but I believe it. I HAVE TO BELIEVE IT. I want this over with.

For the good of everyone around me it has to be over with soon. It just has to.

Filed Under: #SUCKITLupus, Stepford Crazies

I Knew It Was Coming

November 21, 2013 by Queen of Spain 3 Comments

He knows, but he doesn’t want to tell me.

It’s fun to believe, right Mom?

And when you believe it’s all even more magical too…

He knows, and when I push the subject his eyes get full and he looks at me as though begging me to stop asking. He really does not want to answer.

So instead he slowly sits down next to me on the couch and rubs my arm. He always rubs my arm when he’s worried about me. When I’m not feeling well. When I’m upset but trying not to show him…like now.

Plus it’s a tradition Mom. We always have traditions…

He knows, and when I asked him to make sure his sister still believed no matter what he thought might be true, his answer both broke and uplifted my heart…

Oh we all believe in our family and I will make sure she doesn’t know everything. She doesn’t need to know what I figured out a long, long time ago.

But even if I did figure it out a long time ago I just want you to know Mom, you do a really good job. You’re a great Santa helper. And I still like to pretend because I know it makes you happy. And I know it’s fun and it is always a surprise and everyone is always so happy. So please don’t be sad.

I’m not sad, buddy. Not about that anyway. Just trying to stop time a bit so I can take these moments and lock them away in my mind and remember how when you found out about Santa you were more worried about ME than you.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

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