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

March 11, 2014 by 7 Comments

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

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

)

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

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

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

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

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

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

Exactly.

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

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

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

Filed Under: #suckit, Feeling YaYa, Stepford Crazies

My Son, the Filmmaker

March 8, 2014 by

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

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

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

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

Awesome job by all!

Filed Under: Feeling YaYa, Stepford Crazies

QueenofSpain Erin Kotecki Vest Reaches Social Media Milestone

February 28, 2014 by Leave a Comment

Yes, that’s me.

 

And yes, there is more to this story that many may not know.

I’m all over the world baby. From Boulder to Barcelona.

WORLDWIDE

Filed Under: #suckit, Feeling YaYa, TweetQueen

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

I Knew It Was Coming

November 21, 2013 by 3 Comments

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

It’s fun to believe, right Mom? 

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

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

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

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

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

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

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

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

Picture day !!!

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies
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