You are here: Home / Archives for #SUCKITLupus

Pure Michigan Longing

March 29, 2014 by Leave a Comment

Every so often it hits me like a ton of bricks.

Maybe it’s because I still, mistakenly, call it ‘home’ when I’ve lived in Southern California for 15 years. My children are California natives.

Maybe it’s because my Mom was just here, my brother and father just spent a few weeks there, and my Dad is now here to help out.

Maybe it’s because everyone is talking about the new parody ad featuring Pashon Murry, Detroit Dirt entrepreneur and mistress of awesome.

Maybe it’s because it’s Spring Break time and I can’t help think about how we would escape the cold and drive to my Grandmother’s in Florida, stuffed into the back of a station wagon with my cousins while the weather went from gray muck and sleet to sticky, hot swamp.

Maybe it’s because of March Madness, and my school is playing and we’re all cheering and I’m longing to see that frozen tundra I was forced to walk from Holden Hall to class in East Lansing.

But mostly, it was this photo, part of the website highlighting Murray, that drove me over the edge and pushed me well past the boiling point.

I miss Detroit. I miss metro-Detroit. I miss everything about it and I want to be there to watch it change once again into the amazing city I adore.

I can see the Ambassador Bridge in the background, my gateway to Windsor and Bloody Caesars and shopping and my good Canadian friends.

I can remember those train tracks under the bridge area and how I’d park there, top down on my car, and listen to the Detroit River go by with it’s ‘Frasiers’ (as my brother called them) honking loudly and fishing boats. The stars in the sky, still visible despite light pollution from the factories on the river, and the lack of police- they had better things to do than give a damn about a girl parked in the wrong part of town listening to music by the river under the bridge.

Now that area is part of Detroit renewal. And I long to be more than just an ‘advisory board’ member from afar hoping to help from 3k miles away.

I want to be there, live there, get my hands dirty and say ‘we built that!’

I want to complain about the snow and drive my daughter an hour to horseback riding lessons on I-94. I want to take my son to Eastern Market and show him the locally grown produce and flowers and watch his eyes pop out of his head when he realizes this can happen in a city atmosphere.

I want to take trips ‘up north’ for sledding and fun.

I want family nearby to help when I can’t get out of bed or make dinner or end up in the hospital. And when in that hospital I want to recognize the faces and the friends working to keep me comfortable.

I want my kids to know what it’s like to have roots in Hamtramck – to show them the Catholic Church I grew up in and to have them understand this is their legacy too. They can see the beer tent and enjoy the elephant ears and maybe have some history given when I say ‘and this is where my Aunt gave me this rosary, which I now give to you.’

I want to buy a home in one of the renewal areas and work to build it back up to it’s once mansion like glory.

I want water all around me again, putting out the fires in my heart and mind and keeping me calm. The lake I can see daily out a window or on my drive, the river always there, everything within a walk if needed.

Tis the season for Friday Night fish fries and Saturday morning hangovers. Men leaving to hunt, women laughing at their excuse to go drink in the wood for a day or two.

There is also so much I don’t want, and don’t miss…but I need to be part of this solution in a more tangible way than advising on boards of startups trying to make it in the D. I want so much more.

…but it’s only a dream. My house by the river/lake, my chance to help, my ideas that we’d ever leave California.

Husband’s work is Los Angeles specific. My children are in a wonderful school well suited to our needs and our family, and I can’t imagine something like that exists in the Motor City. And then there is my treatment and my doctor. I’m sure I could find another. But it would be hard. It took me 4-5 doctors to find him. And no, I’m not forgetting the cold and the winters. The gray that sucks the life out of you because you long for the sun and not slush.

I’m also not stupid, I know once the glitter wears off and it’s just life again, I’ll be annoyed we live close to family who probably will just let themselves in the door without knocking. Well, the ones that drive me crazy. The others I will WANT to let themselves in and be grateful they are near would always knock. But then there are the others who will say and do things in front of my children I disapprove of and drive me insane. Giving the kids a glimpse of the reason I left and giving them a reason to leave when old enough.

However if given the chance, if the opportunity were there…I’d lobby to move our little family near where I was born and raised.

In the meantime, I will deal with this gnawing at my stomach that we need the fresh air and cold and water water everywhere. The pit of my stomach churns with the pang of want every time I see Pure Michigan commercials2730188969_92d497aae2_z and I dream of a home built from logs, on the banks of one of it’s purely Michigan bodies of water…small town nearby for necessities but mostly just my family and my loves for the sea. I could heal, I could be calm, I could put the pieces back together and figure out where it all went wrong. I could homeschool. Or try. I could show them such beauty in their own backyard. Oh and the garden we’d have! The joy of seeing Spring peak through the snow and actual seasons.

Maybe someday. In the meantime, I will continue to do all I can from afar. Because I care more than I can put into words what happens in metro-Deroit and the city. I care more than I can put into words about every body of water from the U-P on down. I care about Detroit. I care about Michigan. I care about roots.

And it’s never going to go away.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Betrayed by the President & Obamacare? Try SAVED Instead

February 4, 2014 by 40 Comments

My KINGDOM for a $373 a month premium and ONLY $1,500 maximum out-of-pocket in order to take care of myself and the Lupus inside of me!!!

That is what fellow Lupus sufferer Emilie Lamb is complaining about as she blasts President Obama over her new health care plan, forced upon her under the Affordable Care Act. She’s the star of a commercial attacking “ObamaCare” and is giving interviews left and right slamming the President.

Tennessee resident Lamb is one of the few who received one of the now infamous letters from her insurance company, CoverTN, telling her she will not longer be able to keep her plan because it does not comply with the landmark legislation.

But let’s break down the coverage she is so upset to lose, because Lamb is ANGRY at the President, even attending the State of the Union as a guest of Congresswoman Marsha Blackburn.

CoverTN was run by the state of Tennessee. Hmmm, right away I’m raising an eyebrow, as usually those against “ObamaCare'” don’t want “government run” health insurance. Yet Lamb clearly doesn’t have that issue. Good. So let’s move on.

What was the great thing about CoverTN? According to Lamb, “The coverage was perfectly suited to my unique medical condition. It offered me low premiums, a low deductible and low co-pays for my regular trips to doctors and specialists. This plan was perfect for someone with my unique medical condition and limited financial means.”

Yes, Lupus is a unique medical condition and can be very, very expensive for those of us that suffer from the disorder. Lupus has you bouncing from test to test, doctor to doctor and ER to ER.

Lamb says she had low premiums, awesome. How low? $57 a month. WOW. That’s AMAZING. How low was Lamb’s deductible? She doesn’t say. How low were the co-pays? She doesn’t say. Low prescription coverage? Lamb doesn’t say. There is no mention of a maximum out-of-pocket from Lamb. Something KEY to us Lupus patients as most of us hit this maximum every year due to the crazy high costs of all the drugs and treatments we need in order to keep our auto-immune disorder in check. To give you an idea, I have hit my maximum out-of-pocket every single year since my Lupus diagnosis in JANUARY of that year, after my FIRST TREATMENT.

January. I’m not kidding.

Mine was $6,000 for an individual and $12,000 $18,000* for the family under our old plan. We’re saving $2,000 in that category on our new ACA plan and I was THRILLED. Yes, that was a SAVINGS. So to have my maximum be $1500 like Lamb’s…WOW, I’d be crying tears of joy and frankly licking the President’s boots for saving us so much money. I’m jealous.

But, like most Americans, we’re all on a tight budget. So I wanted to figure out just how much more Lamb is paying under ACA and why she’s so upset. She claims she’ll be paying at least $6,000 more per year.

$6,000 was my maximum out-of-pocket so again, I’m jealous.

I know we all have different incomes and an extra $300 a month isn’t easy for anyone. So I headed over to CoverTN to try and figure out what her old plan was all about and why she thinks it was the be all and end all of Lupus coverage. I quickly learned CoverTN was, by far, the scariest type of coverage someone with a chronic illness could possibly have. The only saving grace was it was affordable for those who simply couldn’t afford anything else.

You need to understand something about Lupus patients. We are chronically sick. Like…as in, all the damn time. That means we are CONSTANTLY in and out of the hospital, in and out of the ER, at our doctor’s office, undergoing treatment, missing work, having tests done, undergoing X-rays and MRIs and really weird brain tests to make sure we haven’t lost any cognitive skills. We accumulate thousands upon thousands upon hundreds of thousands of dollars in medical expenses per year. That means we NEED an insurance plan that has things like NO annual caps, NO penalties for pre-existing conditions and NO waiting periods as we get SICKER while we wait and NO lifetime limits.

Guess what CoverTN had? You guessed it, all of those things I just listed. In fact, in announcing they are no longer going to offer the program, they lamented their inability to screw over the chronically ill: “…those that administer the Cover Tennessee programs, can no longer implement annual or lifetime limits, institute a waiting period for pre-existing conditions, require a ‘go bare’ period, or deny an individual coverage due to a pre-existing condition. Insurance companies must also cover preventative services without any out-of-pocket costs to the member.”

But it gets worse for a Lupus patient who had CoverTN, “CoverTN is a limited benefit program that has a $25,000 annual limit.”

HOLY SHIT (sorry, but this deserves a curse word) $25,000!!!!!

Just ONE ROUND OF TREATMENT FOR MY LUPUS COSTS ALMOST DOUBLE THAT. $44,000 is what was billed to Aetna for one round of IVIG for me. That’s what I get EVERY 2-3 weeks!!!! That doesn’t even count the Rituxan I receive every four months or the 17 medications I take monthly or the co-pay every time I go see my doctor or the labs every time I go see my doctor. Just ONE of my treatments ALONE wipes out everything CoverTN had to offer me.

I would hit CoverTN’s $25,0000 annual limit the first week of January. 

I would also hit their lifetime limit. Accrue their penalty for having a pre-existing condition. Have to undergo a waiting period with NO HEALTH CARE  just to QUALIFY and have to pay for basic preventative services of which are ESSENTIAL to keep my system healthy to fight Lupus.

Now, maybe I am an extreme case and Lamb is a minor case. She is, after all, working. She says in the article she’s taking on a second job. My Lupus does not allow me to work.

However, according to information given to me by the Lupus Foundation of America the mean annual direct costs of people with lupus ranged from $13,735-$20,926; the costs of those with and without nephritis ranged from $29,034-$62,651 and $12,273-$16,575, respectively. (source)

That means Lamb’s CoverTN health care was essentially a tiny notch above catastrophic coverage- if that. Her new plan actually will help her should she have a Lupus flare. Except Lamb says, “For me, the impact of ObamaCare is a health plan that is both unaffordable and uncaring. For a law named  ‘The Affordable Care Act,’ this is both backward and perverse.”

For those who don’t know, I was released from the hospital at the end of last week. Lupus flare.

Our new Affordable Care Act plan info was given to the admitting people as I cried in the emergency room, knowing full well I was going to be stuck in the hospital for days. I waited to hear the usual “That will be $500 for your ER copay, your deductible and other bills will follow…would you like to pay now or should we bill you?”

Instead I heard ‘That will be $150 for your ER copay, you have no deductible. Would you like to pay that now or shall we bill you?”

Uncaring? Backwards? Perverse? I shudder to think what would have happened to Lamb if she found herself being admitted to the hospital for a Lupus flare under her old plan.

Unfortunately Emilie Lamb doesn’t see it this way. She went on to say “When you were on the campaign trail, you promised that ObamaCare would help me with my medical problems. You promised that people like me with pre-existing conditions would be better off. And you promised that if I liked my health-care plan, I could keep it. Mr. President, you’ve now broken all of these promises — and not just to me.”

Except she couldn’t be more wrong. She now will be able to receive the expensive treatments to help with her medical problems. She won’t be discriminated against for her pre-existing condition.

However Lamb is 100% correct in that she did not get to keep the health care plan she liked, and I, for one, am glad.

But what of that extra $300 per month? Believe me, I’m not dismissing the extra cost for Lamb. So I took a look at what was available, with the best estimates I could make from what she has disclosed publicly, and plugged it into HealthCare.gov for an estimate on plans she could have chosen for less per month. Even the minimum plans would be a step up from the CoverTN plan she loved. Some of the bronze and silver plans were as low as $137 a month NOT including the tax credit Lamb would qualify for, easily putting her in the $60 range- the same amount she way paying previously with BETTER coverage.

I also spoke with my rheumatologist’s office and they confirmed there are several programs for Lupus, RA, Fibromyalgia, and other patients with auto-immune disorders to help off-set their costs. There are a handful offered through my doctor who partners with various organizations, so I would highly suggest Lamb check with her rheumatologist for similar.

Emilie Lamb, I am sorry you feel betrayed by President Obama. I just hope in time you will see no one is trying to ruin your life by forcing you to give up your bare-bones health insurance. In fact, it’s exactly the opposite.

Should you happen to read this, I am happy to help in any way I can. Something tells me those in the White House you call uncaring and perverse are willing to help too. Whether you realize it or not, they already have.

 

 *cost of our Aetna plan family maximum revised after double checking the photos I made available of our plans on my original enrollment post & subsequent media coverage 

Filed Under: #SUCKITLupus, Auto-Immune Menu

The Lovers, The Dreamers, & Me

January 6, 2014 by 3 Comments

I caught myself tearing up at the Muppet movie tonight.

Kermit opening the drawer and pulling out his torn photo of Miss Piggy. Piggy showing up with her half of the photo. The whole gang singing Rainbow Connection. Had the kids not been in the room I probably would have been sobbing. Yup, that’s where I’m at. Muppets making me cry.

We had Han Solo and Princess Leia on our wedding cake…but I nearly lobbied hard for Piggy and Kermit. Stupidly I didn’t want to be the ‘pig.’ Truth is I’m part Leia and part Piggy, thus making the choice nearly impossible.

My cousins and uncle would make fun of me a lot growing up. I never really fit in with their world, or the immediate world of my blue collar block. Even my best friend called me a hippie all the time and I’m pretty sure hung out with me just to see what might happen next. Hippie never fit, but it was probably as close of a description as one could come up with for my….shall we say…uniqueness back in the day.

I’m not feeling very unique these days. In fact, I feel downright boring. Ordinary. Normal.

For some reason this annoys the hell out of me.

I take too much pride in grand accomplishments I think and it’s my downfall. It makes me one hell of an employee or friend or science experiment, but it probably pains those closest to me. There she goes again, with one of her HUGE ideas that will end up either causing HUGE headaches or HUGE laughs or HUGE pride or HUGE shame. Never in between.

It can make you love me or hate me. I understand.

Now. Well now I’m finding out how to still be me. Funny how you never stop learning about yourself and you never seem to stop trying to be the best of what you remember of yourself after a ‘crisis’ as our therapist keeps calling it. The ‘crisis’ of me being sick. I’d argue it’s less of a ‘crisis’ and more of a ‘shit show’ but…I digress.

It’s hard to maintain the fabulousness of Piggy when you can’t even find clothes you like to wear, and despite hot flashes and sweats from medication you want at least 3/4 sleeves to cover the never ending bruises from IVs and blood draws OR stretch marks on your arm fat.

It’s also hard to maintain leadership over the rebel alliance and a know-it-all determination to fight a war, be it over the checkbook or homework or health care reform, when your body is fighting a battle against itself.

But then again there they were, Piggy and Kermit, reminding me that someday we will find it and I felt like just maybe they were right. Stupid muppets giving me stupid hope thus making me fight back tears as I sat watching with the kids.

Will we find it though? I’m used to the waxing and waning of my disorder now. The spurts of good weeks and the crash when I end up hooked to a leash and fanny pack pumping antibiotics into my system. Or awaking with dread when instead of being able to easily roll over I feel that all too familiar shot of pain from head to toe and realize I’m laying in a pool of sweat, totally unable to get out of bed without grabbing the ends of the sheets and heaving myself over the side until gravity begins to help and tosses me to the ground.

So what do I do? Only what I can. I start school again and hope it impresses as much as some of my more ‘grand’ undertakings…wanting to deck the family out in green and white because it’s all I have to be excited about. The family pretty much rolling their eyes because, let’s face it, it’s NOT as ‘grand’ as they are used to from me.

I get upset they don’t seem excited for me and pout but the only thing in my life making headlines in this house is if I’m capable of taking care of them all or not. Can she cook dinner? Go to the store? Do laundry? Because when it comes down to it, all of those things affect them the most. NOT if I can keep up with two online classes at Michigan State, but if I can get up and make hot cocoa and scrambled eggs or if my husband has to do it. The practical stuff. I do not blame them at all. Those things are hugely important and exactly what healthy families take for granted every single day. Because if Mom can’t do them, SOMEONE ELSE has to. The good thing, if there is one, is the children are becoming more independent. Especially my eldest, who now prides himself on toaster and microwave use. My youngest, being a bit more like me, would rather make her own breakfast anyway because it means SHE did it and SHE is in charge and SHE needs NO ONE’s help EVER…yeah, that’s my fault.

You don’t really ever think about the mundane parts of your life until you can’t do them anymore. At least not reliably or consistently. When is the last time the day was planned around how you acted walking down the stairs in the morning?

One of the things my daughter wanted for Christmas was her room ‘decorated.’ That meant cleaning out her closet and organizing things. It was a lot of work. Each time I came into her room to help the kids would get upset and visibly worked up and worried because I would begin to huff and puff. My face red. Sweat. Lots of sweat. They both asked if I was ok, over and over, and I truly was ok. Just adapting to actually ‘helping’ and bending over to pick things up and MOVING my body. Eventually I began helping when they were busy elsewhere in the house. It was too much for them and they were too upset by my physical appearance. Some days I couldn’t do a thing. Others I could bag up stuffed animals currently out of favor or fold clothes.

NOT a problem Piggy or Leia ever had. To have to do their work away from the prying eyes of others because they were causing anxiety. Granted everyone always avoided Piggy until it was time for her ‘big number’ but that was because she was a pain in the ass.

I liked it better when I was avoid because I was a pain in the ass.

And then comes the resentment. I’ve changed their lives in a way that wasn’t planned and causes their life to be affected. Moms/wives aren’t supposed to do that. We’re supposed to be the ones who help when that shit happens to everyone else. For those who don’t know Aaron had surgery over the holidays and it was almost soothing to have to take care of him. Myself included. The roles felt…I don’t know..normal? Did he need anything? Could I bring him a drink and his pills? Insisting his foot be propped up higher and sending kids for more pillows. Hell, I was HAPPY fetching beer and making him a ‘sammich’ because I COULD. How ‘grand.’ Sigh.

But then again, that’s where those Muppets came in. Piggy and Kermit piecing their wedding photo together after their crisis reminding everyone that anything is possible, that someday they WILL find it, the Rainbow Connection.

We were told the first few years after diagnosis are the worst. All the trial and error and frustration before finding it. Finding the right cocktail, the right life balance, the right mind-set. Finding the Rainbow Connection.

My Rainbow Connection includes a somber victory. The judge’s decision came last week and we’ve succeed in declaring me, by law, completely disabled.

Yay?

An invalid at 39-Or just making another grand project out of thin air? Remains to be seen. But it has taken some of the pressure off around here. Which was wonderful if somewhat humbling for me.

Leading me straight back to the singing Muppets. Straight back to myself sitting on the edge of the bed trying not to show my shoulders shaking as the tears wanted to roll out. I have to think we’ll find it,  although it probably IS magic. As long as I keep hearing it too many times to ignore it… sometimes hope is all you have.

Crossposted at As Dreamer’s Do

Filed Under: #SUCKITLupus

Wordless Christmas

December 26, 2013 by 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 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

We Just Enrolled in Obamacare

November 13, 2013 by 41 Comments

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.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Mrs. Kotecki Vest Boldly Goes to Court

October 26, 2013 by 9 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bumps? Oh great.

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

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

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

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

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

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

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

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

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

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

Oh holy shit.

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

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

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

Who has the flight? 

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

Oh I thought it was your client. 

No, not me your honor.

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

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

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

I spoke into the microphone.

Erin Kotecki Vest

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

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

Stand and raise your right hand…we all stood.

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

I do

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

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

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

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

He said yes.

My heart leapt. This might be ok. Maybe?

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

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

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

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

Connective Tissue Disorder

AutoImmune Disease 

Hypertension 

Hyperthyroidism 

Obesity 

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

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

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

In your opinion is she completely disabled 

Yes your honor

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

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

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

Mrs. Vest was a reporter slash anchor

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

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

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

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

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

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

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

No your honor

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

Not in the national economy, no your honor 

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

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

No your honor.

And just like that it was over.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

An Open Letter to Judge Judy Sheindlin

October 16, 2013 by 60 Comments

Your Honor,

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

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

Debilitating was the word you used, not me.

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

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

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

It destroys organs.

It causes organ failure.

It causes strokes.

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

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

From the Lupus Foundation of America:

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

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

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

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

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

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

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

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

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

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

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

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

Some are just simply hoping to live.

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

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

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

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

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

Sincerely,

 

Erin Kotecki Vest

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

 

Filed Under: #suckit, #SUCKITLupus, Stepford Crazies
«Previous Page
Next Page»