There’s a Bounty on My Head in Washington DC

How much do these people hate me to continue this shut down?

That’s what I keep thinking as Democrats and Republicans continue to squabble over what was supposed to be the budget, but really came down to how much they hate me.

Yes. Me.

I benefit from Obamacare already. As someone who is chronically ill with one of those nasty pre existing conditions, I need those lifetime caps lifted and I need to know I can get insurance if something were to happen to the insurance we have now.

But others out there seem to think that not only do I NOT need these things, they are so sure of it and so angry about it and so worked up over all of us getting insurance they’ve waged war and shut down the government in protest.

They are calling it a government slimdown. You know, showing us all the things we can truly live without if we’d only work a little harder and try.

My da

And all I can think is man…they really hate me. They really, truly, hate me. They hate people like me who are signing up for coverage as I type this. Buying insurance for their families or their small businesses so they no longer have to worry about cutting their pills in half to make them last longer. So they no longer have to go to the ER for that cough that they never treated because they didn’t have a regular doctor and that cough turned into a fever and that fever into pneumonia.

They hate us because we want insurance. Affordable insurance that we purchase ourselves. Sure, some of us might get some help from the government in buying that insurance if we need it, and some of us might not, but at least we can’t be turned away because we have Lupus or cancer or because one of our kids has asthma or allergies.

They hate us so much they even call us names. Just this week I was called a Welfare Queen, a bitch who sucks the government tit, and I was called the reason our great nation is drowning in debt.

Never mind I currently don’t take any government assistance. I do have a hearing next week with Social Security disability. They’ve denied me and my private insurance disability has provided attorneys to fight with an appeal. Why? My guess is the private insurance doesn’t want to pay my disability, they would much rather Social Security foot the bill. It’s part of my contract with the private insurance that they take on this fight for me so I don’t have much choice in the matter. But I digress.

I’m hated because I was a functioning, contributing member of society who got sick. Very sick. I did what any normal American would do…went to doctors, got many tests performed on me, and paid all the bills that came our way from every doctor and every lab and every hospital. Yes, we have insurance. Good insurance. But you see, the bills…they keep coming.

Soon the savings was gone. Then we had to start using credit cards to pay the bills. Then we had to talk to family for help. Then we talked to the bank. Then we talked the government and the bank about the HAMP mortgage re-fi program for people like us who had never been late on a payment but were worried we might be because of all the medical bills that still have not stopped.

We did what those men in suits reciting Dr. Seuss expected us to do, we took responsibility for ourselves. We continued to pay our bills. We STILL pay our bills, but again, they keep coming. That’s the tricky part about getting sick nowadays. You can prepare and prepare and prepare just like you are supposed to, but one major illness and financial ruin is no longer something that happens to someone else. The bills don’t ever stop, and your income goes DOWN not up.

But they don’t care if I’m sick and undergoing treatment. They don’t care if we continue to pay our bills while taking advantage of the provisions in Obamacare and shopping the exchanges to see if we can’t find a way to lower our costs. No…they hate me, and everyone like me.

Have cancer? They hate you. Manage to get in a car wreck? Oh they hate you too. To them you are nothing but a freeloader. A moocher. Someone who, apparently, should have had the MILLIONS they have stashed away for when they get in that fender bender that throws out their back and makes it impossible for them to work.

So I sit and wonder why they hate us so much. I realize we argue over the big issues like abortion and same-sex marriage. But is that enough to leave me without coverage? Without protection? Without doctors and medicine?

In essence: are our political differences enough that you would leave others to die?

I think the past two weeks have given us the answer.

Yes. Yes they would leave you to die. Survival of the fittest is their motto and we don’t fit the bill.

Of course, many in their own families don’t fit the bill but they will tell you they planned better.

Of course, many in their own families suffer with illnesses like we do but they will tell you they changed their lives and made sacrifices and worked harder than we did. Which means they deserve to live, and we do not.

No, I’m not sure why they can’t see that not everyone can plan as they can. Not everyone has millions and not everyone can dig their way out of medical debit and not everyone has family to fall back on and not everyone has anyone for support.

But that’s not their problem. In fact, they’d like you to simply go away. Head to ‘your closest church’ is what I was told, and there I would find ‘whatever I needed.’ Today I was at my closest church for my daughter’s basketball game. Out of curiosity I asked what was available for a family in a situation like ours.

I was told they had a lost and found we could go through and winter coats should be coming in soon.

That’s not exactly the blood plasma and chemo I use to keep me going.

Perhaps they don’t realize that most of the chronically ill can’t drive. They rely on things like Meals on Wheels and WIC, but those that hate us were too busy shutting down those programs while making sure WWII Vets could look at a memorial. Never mind that Mom can’t get out of bed because her pills have run out and she would take her youngest to preschool but the local Head Start program is also shut down, because those types of kids don’t really need an education anyway, right?

That’s how much they hate us.

Which brings me back to wondering why. What is it that makes them hate us so much they would push our government to the brink of default, push 800-thousand of us out of work and call it ‘fat trimming,’ ignore every economist on earth screaming what will happen globally if the US defaults, but more importantly what will happens to their OWN PEOPLE. Social Security checks. Small business loans. Veteran benefits. Clinical trials of drugs that may SAVE LIVES.

Why do they hate me so much? Why do they hate you so much? Why do they want us to die? Why don’t they care?

Is it money? They say money is the root of all evil…so is it money? Is there a sinister plan that nets them millions once this is all over?

Are we worth millions in cash to them? Millions of suffering or even dead Americans = millions in cash.

I know I don’t agree politically with those on the right. I know I can argue like hell to get my point across. But never, EVER, would I wish them ill. Would I wish them the hell I am going through. Would I wish them dead. And never would I VOTE to show them just how much I want them out of my life. I would never vote to demand their services, that in some cases sustain their lives, be terminated.

I don’t know why they want me dead, but there seems to be a bounty on my head in DC and I thank the President and the Democrats for fighting for my right to live.

Can Anyone Save The House GOP?

You saved us. 

That’s what my son told White House staff gathered around the table as he sat on my lap.

No really, you saved us.

My son, who hadn’t said a word for nearly the entire meeting, even though he had confided in me he really wanted to tell them all about how his Mom has Lupus and how great it was they were helping more people get treatment and medicine and see doctors.

Thank you for saving us.

My son, sitting on my lap in the West Wing, his little sister by his side. Both having devoured packages of White House m&m’s just minutes prior, had the entire room welling up with just those words.

It is all I can think of now as I watch the news and I see these men and women who call themselves representatives of the people. All I can think of is my son, in his suit bought just for the occasion, driving home the importance of Obamacare in a way only the innocence of a chid can.

And this guy always a chip off the old Daddy block

The Affordable Care Act is a law passed by Congress, signed by the President, held up by the Supreme Court, and even fought over during the 2012 election where President Obama, once again, came out on top. Yet still, these men and women who call themselves patriots have rather unpatriotically brought the fight back up again, refusing to accept their defeat and refusing to understand that right now people can go to and enroll in an insurance plan.

They shut down the government yet stopped nothing.

Right now I’m looking at my husband’s paycheck to see exactly what gets taken out to pay for my astronomical medical care and I’m comparison shopping at – considering our family’s options and what is best for us. There is an Anthem Blue Cross plan that pays 90/10 instead of the current 80/20 we have with Aetna. There is a HealthNet plan that covers my very expensive treatments with copays instead of the huge deductible I pay every January now. Lots of things to look over and consider that potentially could save us even more money.

I say even more money because ObamaCare has already brought us help. People don’t understand the benefits yet, and that’s really what this fight is all about. You’ve seen my bills. I’ve tweeted them time and time again and explained how our family has used ACA already. But what about you? Sally Kohn wrote a great piece for you- Five Reasons Why Americans Already Love ObamaCare. Did you know those things?

Listen, you may not like that 48 million Americans now have access to health care. You may not like that they can shop and insurance companies can compete for their business. You many not like that President Obama has done something amazing and it WILL be life-changing for those like me with chronic illnesses. Except we’re the lucky ones. So many are like me in disorder only.

My family has the luxury of comparison shopping on the exchanges while others have no insurance and don’t even make enough to pay for the meds the ER doc prescribed the last time they got so bad they broke down and went to the hospital. Now they CAN- based on their income they can go to and enroll now and it might be FREE or under $100.

That changes everything and those Republicans in the House know it…they KNOW IT.

It’s just a shame they don’t care. 

Perhaps if they were in a room with my family, sitting around a big office table, hearing about how hard it is to live with Lupus and what it does to your life and your kids’ lives…and then to suddenly hear the sincere thanks from a 10-year old child. Perhaps then they might let their hearts grow a bit and take off the attached riders and pass a REAL bill. Not one that tricks Americans into thinking they don’t even NEED health insurance and should just pay the fine. What sort of horrible advice is that? All because they believe this is government run health care? Last I checked Anthem Blue Cross and Aetna and HealthNet weren’t my government. All the government has done is put in place some rules that should have always been there- like the one where they can’t find really stupid reasons to kick you off their policy simply because you are sick and costing them money…we like that one at our house- and put all these companies together in one spot to compete for your business. Sounds pretty damn American to me.

But what’s even more American is a 10-year old boy finding his voice in a room full of adults simply to say thank you because he knew, at that very moment, it was important to express that his family needs ObamaCare and he was grateful to have his Mom.

That’s how the President knows he’s doing the right thing. That’s why he won’t give in and neither will we.

Thank you, Mr. President for saving us and to your staff for staying strong.

As for the House GOP…perhaps a meeting is in order between you all and my son. I’d let my eight-year old daughter tag along but you don’t want her there, trust me. She’s not nearly as sensitive and empathetic as her brother.

She’d just kick your asses.

#allhailhala giving Congress hell in her purple lupus scarf

Of Leeches and Heroes

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

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

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

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

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

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

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

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


I Am a Leech

by Anonymous 

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

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

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

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

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

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

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

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

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

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

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

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

Go home and take some ibuprofen.

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

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

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

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

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

Living with Lupus: Reclaiming Me

Taking back my life from Lupus is no easy task.

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

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

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

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

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

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

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


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

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

Stay tuned.

From Exercise-Fiend to Vegan: Moving Forward

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.

Welcome to Hotel Henry Mayo

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.

Still trying to assess hospital damage physically and emotionally on entire house

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.

The Vest Family Goes to Washington

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.

Yes we are at the White House #lupusadvocacy we have some important meetings

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 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.


We Have Work To Do: National Lupus Advocacy Summit 2013

My hands are a bit swollen tonight. Might be the heat. Probably is the arthritis. More than likely it’s a combination of the heat and Reynaud’s and the steroids reacting to the total nerve of my doing one load of laundry- WITH the children’s and my husband’s help.

They carried. I stuffed in the clothes. Emptied the clothes. They carried. I sat and folded. They carried.

For this I get swollen hands.

Thanks Lupus!

It’s just one of the little things. One of the tiny, little things I deal with daily and try my damnedest not to complain about because I can sit and fold. And as most people would say…I don’t look that sick.

It is for that reason, exactly, that I’m doing the laundry. So it can be packed into a suitcase and my family and I can fly to Washington, DC on Friday.

Why Friday? Because on Monday and Tuesday we hope to talk to some important people about our life. About how I don’t really look all that sick, but how life isn’t exactly normal around here. How I need help with the laundry, the dishes, and even need help raising my arms to brush my hair when days are bad.

Why Friday again you say? Because I can’t leave the day before, like most people. If I am going to fly somewhere I need several days to recover before being strong enough or comfortable enough to take on another task, like meeting with those very important people. So even though we may not tell our story until Tuesday, we have to leave the Friday beforehand.

These are small things though. So small. They are nothing compared to what we’ve been through and they are nothing compared to what others go through.

I’m lucky. My family is lucky.

Way to go @detroitredwings!!!!

You see, when I was finally diagnosed with SLE or Systemic lupus erythematosus (along with a host of other auto-immune disorders like fibromyalgia and rheumatoid arthritis and Sjögren’s syndrome and CIDP and Reynaud and unspecified connective tissue disorder and neuropathy and so on and so forth) we had family to support us. I had benefits through my supportive employer and we had decent savings and credit to help us through.

We still ended up nearly losing our home. We still ended up in crushing medical debt. We are still battling with Social Security Disability Benefits. And my private disability benefits through my employer continue to put me through second and third and fourth opinions and tests- the latest of which will include a neuropsychological evaluation to make sure it’s not all in my head or that I’m not too smart or too stupid or insane or sane, it’s not very clear why they are putting me through this all day, sit down test. Mind you this is on top of the stack of lab work they already have in their possession documenting my colon resection, my gall bladder removal, my stroke, my total hysterectomy, and of course the continued treatment that includes weekly inflammation tests, bi-weekly IV infusions (three days a week, 4-6 hours per day) and the BIG infusion that comes twice a month every four months that knocks my immune system so low I’ve even gotten a scrape INFECTED just after the IV.

Did I mention I AM ONE OF THE LUCKY ONES? We have the good insurance. We have the support. We have the roof still over our heads. I am able to charge our deductible so I can receive the treatment that so many can not afford. Not even with their insurance.

That’s why we have to go to DC. That’s why my 10-year old will wear a suit for the first time in his life, and my eight-year old will talk about Lupus to adults with more authority than any eight-year old has a right.

That’s why my husband will fidget with his top button under his tie…purple, for Lupus awareness…and try to keep it buttoned for as long as possible while also trying to explain just how shitty it is to be a caregiver to an ill wife.

That’s why I will humble myself and see people I haven’t seen in years, with my moon-face from the steroids and my weight gain from the steroids and tell them why ‘ObamaCare’ must remain in place or even the ‘lucky’ families like mine will lose it all for sure.

My doctor agreed a flight is not the best thing for my body, but so long as we are careful, the message we are bringing to DC is well worth the risk.

While we will be there, officially, for the National Lupus Advocacy Summit on June 24th-25th, you don’t have to have Lupus to have a story. I want to bring YOUR story to DC with us. We’re not just going to tell our ‘lucky’ story, because we know there are so many of you that don’t have it as well as we do. Or have it differently. We want to tell MANY stories. Ours and yours.

Share your story with me in the comments of this post. Let my family be your voice. Let us tell them of how you can’t get coverage, of how many times you have been turned down. Let us tell them about how you split pills because you still can’t afford your meds. Let us tell them about how just because you do not look sick, it doesn’t mean you are not suffering. Let us tell them about how your kids are handling it all. Your partner. Your parents, your friends, your employer.

They might even read your words directly.

This is your chance. Help us to help you. Let’s all make a difference together.

I want to type more. There is so much more I want to say. But it will have to wait because my hands remain swollen and I’m tired and I need to rest up.

We have work to do.

Comments are open. Use them. Spread this post far and wide to every one you know who struggles with chronic illness and needs someone, anyone, to tell their story.