The End.

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.

We Just Enrolled in Obamacare

Enrolled!

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.

easy to sign up

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.

Took about 20 min total to sign up

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.

Mrs. Kotecki Vest Boldly Goes to Court

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.

 

 

 

An Open Letter to Judge Judy Sheindlin

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. 

 

There’s a Bounty on My Head in Washington DC

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.

Can Anyone Save The House GOP?

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

Of Leeches and Heroes

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

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

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

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

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

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

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

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

-Erin

I Am a Leech

by Anonymous 

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

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

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

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

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

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

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

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

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

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

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

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

Go home and take some ibuprofen.

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

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

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

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

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

Living with Lupus: Reclaiming Me

Taking back my life from Lupus is no easy task.

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

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

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

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

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

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

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

#Sparty

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

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

Stay tuned.