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 

I spent the better part of the day trying to figure out how to change.

Should I go vegan? Vegetarian?

Should I try getting up at 5am every morning and walk to the end of the block again? Then in a week around the corner? Then in two weeks around the block? Or should I try to get in the pool daily and swim?

Should I cut out dairy? Maybe carbs.

My doctor gave me the ok to try whatever I wanted and gently reminded me nothing would really make a huge difference until I was off all these steroids saving my life.

…off all these steroids saving my life.

I’m not sure about the saving my life part. Sure they are saving my organs, but what life are they leaving me with?

There has to be a happy medium here. I’ve been trying to find it for a long time now and I’m at my wit’s end. I have to LIVE.

I want to enjoy myself not just stay alive. And my situation is not so desperate where I can’t think about doing these things, even my doctor agrees. It’s why he has no trouble with me flying again at the end of the month to see family (so long as my lab results and body are doing well) and it’s why he won’t stop me if I want to try new things.

The question is…what? I know I’m limited. I know I won’t put my body in danger, it has to stay here and healthy for those I love. But I need to have A LIFE. A life that includes romance and outings and friends and socializing and fun.

I feel like drastic changes are needed in order to take control of this situation. I know I can’t take control of Lupus, but maybe I can change enough of my habits and my lifestyle that Lupus will have less of a chance of seeping into every part of my life…as it has.

Right now, post hospital stay, it’s all-consuming and all around us and all a little too much. I can’t push it out of my mind or shield the family because there is too much aftermath to deal with. Hopefully that portion will be over with soon. Then I can go about life for them without mentioning the “L” word for a while.

In the meantime I will formulate a plan to move forward, again. Thus far I will begin school again in the Fall. Enough to keep my brain going so it doesn’t go numb and I work towards a goal.

Physically it’s harder. I have limits to what my body can do, but they aren’t so great that I can’t overcome them and they aren’t so great that every so often I can’t get off my duff and move. It won’t be easy. It will take time. But change has to come.

I can’t live like this. Ideas are welcome.

I am still trying to wrap my head around what happened. What went wrong.

Except nothing went wrong. At least, not that I can pinpoint just yet.

I got a stomach bug. Just a simple stomach bug.

I was learning my limits. Learning to deal with this disorder. Learning how to live again and all of the sudden…a three night, four-day stay in hotel Hospital complete with blood transfusion.

Thank you to all the friends and family who brought over meals, visited, and were just plain there to listen as we waded through the unexpected stay.

I have so much more to tell you and to say…about how this came just days after a very stressful test by my disability insurance company, wanting to make sure I really deserve that check they give me…about how this came after telling White House staffers living with a chronic illness means I could be hospitalized at any time (bingo!) and our lives turned upside down- like so many millions of Americans. And about my roommates, the first of which did not have insurance. The second was trying to figure out Cobra and send in a check on time so her hospital stay would be covered.

Sometimes I wonder how we Americans survive. I have to think about the bills that will arrive from this stay instead of concentrating on getting well. And worry that my disability check could be gone at any time for any reason as they put me through test after test to make sure I’m really sick.

Maybe this last round of treatment that had to be administered in the hospital, and two units of AB – transfused in the hospital, will be enough for Mutual of Omaha.

Probably not.

Then again I have my appeal for Social Security disability in October…

I am thankful the Affordable Care Act means Aetna can’t fight as hard to throw me off my husband’s insurance when they see I was admitted and received a ton of treatment. And that those lifetime caps aren’t an issue- or we’d be screwed. I don’t think people understand just how important this first step at changing our heath care system really is…and the GOP fight to take down ‘ObamaCare’ wages on while we sit in hospital beds moaning and complaining about the system.

Here is that first step at changing the system. Just a reminder. It may not matter to you right now, but it will eventually. When you’re at the ER with your kid, or when you’re taking your Mom to get her physical (a ton of preventative care measures are free now). I know, I know. I’ll stop. But not until you go check out HealthCare.Gov and at least know how it will all affect your family.

More later as my crusade continues…just not from a hospital bed this time. I hope.

It will come as zero surprise to you, my dear readers, that I have trouble sitting still. From the minute I was diagnosed with Lupus, I knew I had to do something and do something big. There was no way I was going to take this disorder laying down and no way that once I was capable I would use everything I had to bring attention to Lupus and just how crappy it can be.

Keep in mind where we started:

My family Googled the disorder and found outdated information and very little information. And what they found scared the hell out of them.

When we finally got some good info, we were told research was scarce and drugs for the disorder even more scarce.

As I lost organs to surgeries and struggled with pain and fatigue and went from doctor to doctor, no one seemed to know what in the hell we were dealing with. Four rheumatologists. Three gastro docs. Specialists from UCLA and Cedars-Sinai. From there,  a Lupus advocate was born.

As I continued to rely on my husband for support to get me through those tough days and to just pick up the slack around the house, a Lupus advocate was born.

As my young children visited the hospital time and time again, or were rushed to a friend’s house while Dad drove Mom to the emergency room as she moaned in pain once again, two little Lupus advocates were born.

As part of the Lupus Advocacy Summit, my family and I dipped back into my “other” life…the one I had before Lupus changed it all. The one you all may remember where I traveled a lot and actually did something other than sit on my couch, complaining about pain or fatigue. The one where I spoke to large audiences in Austin or Reno or New York or Washington. The one I miss, terribly. The one where I met many of you in person and we exchanged hugs.

Then you watched me change.

Sure the political rants and raves continued…but not as much.

The hockey fan in me still used twitter to watch playoff games…but not as often or as closely.

The tweets weren’t as frequent. The Facebook posts a little light.

My body would rather sleep, frankly. Or it would rather have its medication, THEN sleep.

You watched the photos continue to be posted but I was in less and less of them, frightened by my steroid puffed up figure and face.

Yet you continued to cheer me on. For that, I am forever grateful. It gave me the courage to remember who I am and what I am capable of.

So it occurred to me that I know some pretty damn important people, and they just might be able to help. After all, I do share my life online and millions have watched me go from interviewing President Barack Obama to an IV in my arm, receiving treatment, twice per month. And I KNEW more needed to know about auto-immune disorders and chronic illness. The toll is takes on our lives, on our finances, on our loved ones. Hell, you read my tweets as we battled with JP Morgan Chase over our mortgage. As we continue to battle Social Security and Mutual of Omaha for my disability.

So I made the call. Or, more accurately, I sent the emails. And without hesitation the White House accepted my offer to sit down with my family, and a representative from the Lupus Foundation, to hear OUR story…and yours.

They want to help. They want the new Affordable Care Act to help. And we are all going to work together to make sure everyone stays informed on how to put the new healthcare.gov information and site to use for YOU.

That means when I am well enough I’m going to help spread the RIGHT information to the public on how they can access the marketplaces, where they can find preventative care (did you know a whole lot of it is FREE NOW thanks to ACA?) and just plain how they can get HELP.

And keep in mind,  just as importantly…they listened. The White HOUSE listened as I talked about what many of us go through: the multiple doctors before we even know what the heck we’re dealing with. The bills that never end because we don’t have a cure, just ongoing treatments, the endless toll on our support systems- if we even HAVE support systems. And with wide eyes, like so many others, they listened with sympathy and awe learning for the first time what it’s like to have Lupus, an auto-immune disease, a chronic illness.

Lupus advocacy reached the White House this week and that is just the start. Now the real work begins as we turn our advocacy into funding, research, and relief for all of those- myself included- who suffer.

I also want to note that we were lucky enough to sit down with our own Congressman Buck McKeon. Now, I know what you are thinking “OMG! Erin sat down with a Republican and no blood was spilled and no headlines were made and no one was arrested?” It’s true. The Lupus folks set up the meeting and my family and I happily accepted. We need all the allies we can get in this fight- Lupus is non-partisan.

Congressman McKeon was gracious and asked us many questions about the disorder. We, in turn, asked him to support HR 460 – The Patients’ Access to Treatment Act. I truly hope and EXPECT his support.