The Romney campaign is out with a new ad talking about Ann Romney’s Multiple Sclerosis diagnosis and her ‘soul mate’ Mitt’s reaction and subsequent handling of her chronic illness.

Their children weigh in. There is a link to donate to the National Multiple Sclerosis Society and for those of us like Ann, with chronic auto-immune diseases, it’s all very touching and nice.

Unfortunately it doesn’t say a word about what ‘President’ Romney would do for people like Ann and I. Not one. Single. Word.

Since Mitt isn’t my soul mate I’m going to guess he won’t be there to hold my hand or see me through to the other side. Or to make sure he’ll stand by me since I too can’t do the things I once did.

My husband has done the same as Mitt Romney thus far, but he’s not running for President. So as of right now, Aaron has done just as much for me (politically) if not more than Mitt Romney.

What we do know is candidate Mitt would repeal the Affordable Care Act– the groundbreaking legislation that would make sure my and Ann’s disease would not mean we’d lose our insurance coverage, or making sure there is an end to lifetime limits of benefits.

I’m sure Ann and Mitt understand how expensive a chronic auto-immune disorder is…right? They know that those of us who have worked (be it as stay-at-home moms or in the traditional work force- I have done both) now can not bring home that paycheck. They get that, right? I mean…what with this sweet video showing me their love, they surely understand how hard it is financially.

My doctor has told me I have a choice: I can go back to work and get sicker, lose more organs and potentially my life…or I can accept that my illness has rendered me disabled and become content with taking care of my young children as best I can while receiving IV infusions several times per month.

Ann and Mitt get that, I am sure…because they live it. I mean, that’s what the video tells me. Certainly they understand the loss of my paycheck because of my disease has been a terrible burden on my family. And certainly they understand, given Ann’s condition, that the medical bills piling up (with our very good insurance) and the loss of income means families like ours need things like long-term disability programs – be they social security or private insurance through our former jobs.

They SURELY understand that, right? So Mitt would CERTAINLY, given his love of his soul mate and total understanding for what a chronic auto-immune disease does to a family, endorse what the National MS Society endorses in ‘Obamacare’ – right? Because he and Ann GET IT. They GET how hard it is. They GET how much we suffer. THEY GET IT… because their new VIDEO TELLS ME SO.

Oh wait. The new video doesn’t say that. So let’s try and figure out what Mitt would do..since he understands.

As it turns out his ideas for health care would leave people like Ann and I out in the cold. Compared with the Affordable Care Act, Romney’s plan would leave millions of people dropped from their employer plans. Wow. What a plan for his soul mate and those of us like her! How …caring?

I applaud the Romney campaign for releasing a campaign video giving people information on how to donate to an auto-immune disease organization that endorsed ‘Obamacare.’ But I would clap a whole lot louder if the candidate himself would stand up for people like his wife and myself and support policies that wouldn’t leave us on the street.

Perhaps the Romneys don’t understand because they live in a different world than the rest of us. The one where it actually matters if your spouse loses her paycheck and has to fight to get disability (my fight is going on eight months now) in order to pay the mortgage.

You see Mitt and Ann, after Aaron and I cried together at my diagnosis, and did the same things you two did- we then had to do something else: we had to figure out how in the hell we were going to keep a roof over our heads and food in the mouths of our children and ourselves. Not to mention the thousands upon thousands of dollars in medical costs for my treatment.

So you can take your new ad and get all teary while viewing it in your screening room at your ocean view mansion with its car elevators, while we continue to fight for my disability payments and send in paperwork and documentation to hopefully be approved for a home loan modification. A part of the process you seem to leave out of that touching video.

You also seem to leave out how a chronic illness financially destroys a family, bankrupts millions, leaves many of us wondering how in the hell we are going to pay for treatment and the bills. If I sound a bit upset, it’s because I am. Your video just slapped me in the face, hard.

Do not relive with me and my family how hard it is to get a devastating diagnosis and show me what a stand up husband you are and then offer me NOTHING about what you would do as President for those of us like you and your soul mate.

That’s why we will be fighting for President Obama who has actually outlined and enacted policies endorsed by not only the charity you promote at the end of that video, but almost every other auto-immune organization in existence. Because his policies will HELP families like mine.

It takes more than a soul mate to get through multiple sclerosis or lupus or rheumatoid arthritis. For those of us fighting the battle, like Ann, it is a daily struggle you seem to not fully grasp.

I’m sure glad President Obama does.

I needed something.

I needed a goal.

I know I have months, no… I have years of these treatments ahead of me and while I know they are working, I needed…something.

Right now my life consists of trying (and mostly failing) to keep those I love living their lives as normally as possible. Keeping them happy. Keeping them oblivious to what I go through daily. Keeping them happy. Did I mention that already?

You’d think that would be easy, but it’s nearly impossible.

While the kids probably remain the least affected, my husband has found his own ways to cope. One way being his inspiring 5k, mud run, and half marathon running. He is in amazing shape and continues to bury his old records with every new race. I am insanely jealous of his determination and dedication to his health and his goals. Not to mention his hot, hot bod.

Meanwhile, my job has been to sit and take pill after pill and infusion after infusion. The steroids have left me sloth like. So when word came that my infusions are, in fact, working…a twinkle of hope awoke inside of me. But even that twinkle can be snuffed out quickly when I think of all the work that remains ahead.

There are just so many more IVs to go. So many more treatment sessions. So many more days of 4-6 hours with that damn thing in my arm pumping the only drugs that seem to be doing anything for my body in and through and in and through.

And all I do is worry about the kids and Aaron. It is almost to consuming at times. My mind working overtime trying to come up with ways I can ease the pain, the stress, the never-ending worry. Did I mention the constant worry?

All the while I haven’t done a thing for myself. Sure I’ve bought myself  some clothing out of necessity. But I realize now that I have done absolutely nothing since I got sick except work really hard to NOT be sick. Doctor appointments. More doctor appointments.

I can’t really go out. Well, I can but I can’t. Going out for lunch means staggering my afternoon dose of pain pills so I can drive. Or asking someone to pick me up and take me.

So I really don’t have a social life. Unless you count gossip from the nurses my social life.

I am not working, so there are no co-workers to chat with. I’m probably overly chatty with the kids’ teachers and principal and other administrators because they are adults and WOW LOOK ADULTS THAT ARE NOT WEARING SCRUBS!

Which leads me back to my goals. Now that I’m feeling a bit better, and we’re lowering the evil steroids that have made me the size of Jabba the Hut and one of the most undesirable women on earth…goal #1 is to lose the steroid weight and get my body back in shape.

It will be my hardest goal, thus why it’s #1. I’m so restricted right now in what I can and can’t do that walking the dog -very, very slow- just a few houses, is about it for me.

Which leaves me with diet. Even if I eat next to nothing, the prednisone doesn’t seem to care. At least, according to my doctor, not until we get me tapered down to 7mg or 5mg. Right now I’m at 12.5mg. Next week we’ll try 10mg. And next weekend I plan on re-joining a nationally renowned weight loss program. I may not lose a single pound until I’m off the steroids, but at least I will be establishing good habits for when the time comes.

Leading me to Goal #2- feeling hot, feeling like myself, taking my body back for ME. I want to have more work done on the tattoo on my back, and I want it to snake down to where all those damn IVs go.

So as a reminder as to where I will END UP, today I got a new tattoo- the goal tattoo. The one where all the others will end when this journey is finally over, or at least when it’s wound down and life is at rest at its new normal.

It will also serve as a reminder each time that IV goes in. Each time they take blood. Each day I sit there over and over and over again feeling worthless and like a waste…a reminder that all of this is worth it. My children need their mother. My husband needs his wife. I am not replaceable and there is no other me.

What they don’t tell you about chronic illness is it makes you question if those who love you would be better off if you did succumb to your illness. If they would find peace and no stress and have a ‘normal’ life with some healthy woman who could do all the things you can’t and give them all the things you can’t.

…and as you fight for your life your mind wanders to the dark places no one’s mind should ever wander. Because there is only one you. No one does things the way you do, sick or well. No one. No one loves them the way you do and no one ever will.

So goals are set. They may seem like small goals to the average person, but a year ago I was in so much pain on a regular basis I was in and out of the hospital just so I could be made comfortable. Which makes my small goals REALLY HUGE and really important steps to taking back my life.

Now that we have the right cocktail mix and we head towards remission, I’m setting these goals so I can take back control and take back some of my body. Lupus may always be there, but can never have all of me.

And then, once my body is back under my control…we make more goals. I want to return to work. I want to travel. I want to walk my kids around Disney World and hold my husband’s hand…not have him push me in a wheelchair.

I want to enter a room and flirt with the bartender while Aaron puts his arm around my waist and leads me to a table of friends who talk to us about work and kids and life and not once mention doctors or illness or hospitals.

I want to live again, and not in this half-life where sit for hours with an IV in my arm waiting to feel better.

I’m getting there. I’m thrilled to have been healthy enough and strong enough to achieve a goal today. A small, but important goal that will serve as a reminder of all the others to come.

Just one more step along this road, but I am happy to say this step moves forward. This step is my doing. This step was ALL ME.

…and it was fucking huge.

I can’t take back what has happened.

I can’t fix it. I can’t change it. I can’t even get my body to cooperate enough to erase the reminders of what Lupus has done to change my life. My family. My marriage. My everything.

All I can do is move forward and hope and work and push through it all.

I’m so scared though. So very, very scared.

It seems easier to type that I’m scared than to say it out loud. Telling name-less, face-less internet fairies that may or may not ever read this and may or may not ever care.

That’s not to say you don’t…care, that is. You aren’t the name-less, face-less ones though. You are my friends.

Tonight I just type into the void because I am getting better and it’s scary as hell.

I’m following doctor’s orders impeccably. Crossing every t. Dotting every i. I will not go back. I refuse to go back. There can not be a flare. Or another ER trip. Or even a cold or flu.

Why?

Because we’ve hit the end of the line here. Well, I say ‘we’ as in the royal ‘we.’ And I say it as my heart thumps so fast I feel like it might just jump out of my chest.

I’ve spent the past few days taking inventory. I’ve come to the conclusion it is my turn to take care of business around here. My doctor agrees I am strong enough. Sure, I have a ways to go and I have to remain stable, but he’s given me permission to become a bit more independent.

This is needed, because independence is what I thrive on and it is what I must prove to others so they can exhale and maybe, just maybe, find some joy.

I want to lie and tell you I find joy in the small things like being able to pack lunches for the kids or even participate in carpooling them to school…but everyone needs some joy that isn’t associated with someone else.

We all love our children more than life itself, yet we all need something of our own.

I have had nothing for myself for two years now. Nothing except Lupus.

Not a girls night out. Not the ability to meet a friend to shop. Not even the fun of a glass of wine after work. Not a yoga class.

Two years of NOTHING but doctors, hospitals, surgeries, treatments. The goal was and remains to get me back to work. To get me back to doing what I love. To get me back out in my garden. To get me walking Disney instead of being pushed in a wheelchair. To get me off the steroids and then to get the steroid weight off my body so every single time someone looks at me they are not reminded that I am SICK.

But I am more than afraid something will go wrong. We’re so close that now I’m shaking with fear, knowing that any step backward will devastate.

I can’t have that. I don’t think you understand how important it is that there are no more steps back.

Maybe I sound like a lunatic. Everyone with chronic illness knows there are ups and downs and you go forward and back. At least, that’s what they tell me. But now that we’ve found the right drugs, and we’re making that slow and steady climb…I will not go back.

The past two years were a hell I do not wish upon anyone. We are looking at trying to modify our mortgage because for SEVEN months the long-term disability company that took money out of every single one of my paychecks has been ‘reviewing’ my claim. They are sending me to see another doctor who will, no doubt, say the same thing FOUR OTHER doctors have said. That every test and lab work says. That anyone who has seen me knows. That the treatment I am now on is showing to improve. That I have LUPUS (and a host of other auto-immune titles I won’t bore you with) and this renders me disabled.

Today I managed to take my kids to buy fishing poles at Target. Then I TOOK A NAP. Because for TWO YEARS I have rested and lost organs and had a STROKE and now I need to build back up all the strength I lost. I need naps after things like a quick trip to Target.

And I will do this. I have NO DOUBT.

I just don’t know how to ask those around me to have faith and believe I can. I can’t ask this of them any longer. While I would love to have their support as I crawl across the finish line, I truly must do this alone. I don’t want to, but I no longer have a choice.

I have to do this alone because I’m the only one who can stop those back tracks from happening. And I can not ask those around to give any more than they already have.

So yeah, it’s scary. But I’m telling myself it is only scary because I can see light.

I have just enough strength to fight to get our home in order. To fight for the modification on our mortgage the President promised to people like us…those who paid their bills, despite hardship.

I have just enough strength to make sure I get my long-term disability or a lawyer to make sure she gets it for me.

I have just enough energy to apply, even though I did not want to, for social security disability and fight with them.

Because with what I have gained in strength and health, I’m going to use FIRST to take care of my family. I have to make sure my illness means we do not lose our home. We do not lose our way of life. We do not lose whatever is left of any peace of mind we had- because again, as the President says…no one should go bankrupt because they GOT SICK.

So while the doctors work to get me back into fighting shape, I’m going to use the phone, the web, the little driving I can do, and I’m going to try and save everything we worked for all these years.

I don’t know if any of it will work.

And there are no guarantees tomorrow I don’t land myself back in the hospital.

But you had better believe I am fighting like hell and my priorities are straight. With what my doctors are allowing me to do, I will be using all that energy just to clean up the MESS Lupus has made in our lives.

Which is why anyone who says we don’t need ‘Obamacare’ is nuts. Which is why anyone who says we don’t need to help the middle class is nuts. Which is why anyone who seems to think family leave to care for a sick loved one isn’t important is nuts. Or protections for workers – protections that are usually the result of collective bargaining by unions. People who tell you these things are not needed clearly haven’t walked a mile. Come spend just a day or two at our house. Come and see what it is like to not know what the next blood draw will show- will it mean another week’s stay at the hospital? Followed by a batch of bills that put us further into debt. All because I GOT SICK.

I am scared for my health, but I am infinitely more scared about what the result of my health has done to our lives. I’m the one who got sick- yet my whole house suffers. My entire family suffers. People buying plane tickets to help with money they may or may not have. family giving help in every way they can. And it blows my mind to think of those less fortunate than we are….the ones who don’t have the support. The family. The ability to go into debt.

And that is an anger and rage inside me I don’t think I can explain in words. I can only show, via my actions, that my first order of business is to continue down this path of wellness and to take steps to remedy the destruction my illness has wrecked upon everyone I love.

No one plans to get sick. No one plans for an accident. No one plans to have to explain to their children and husband that they do not know for sure if Lupus will leave them alone forever…or if it will come back again.

There may not even be a finish line for me. Only goals here and there. Things like getting back to work, taking the kids to school, getting dressed up for a night out with my husband and watching his eyes light up as he sees a glimmer of the old me inside. The woman he fell in love with and has honored in sickness and in health.

I may not have been very good at this at the start. I was stubborn. And it cost me dearly. I thought I could do it all alone and I thought I could do it all quickly.

I found out the very hard way there are times where you must rely on the support system you have, and you must, must move slowly. Slow and steady wins the race.

I’m moving slowly still, much more steadily though. And I’ve been able to relieve some of weight as I try to give my support system a well deserved rest.

And I will shake with fear as I move forward…but I WILL move forward. My head held high (despite the humiliation Lupus has caused me daily) and my total independence nearing (despite the need for my family and friends standing at the ready to catch me) because I am getting well.

I BELIEVE it. The tests show it. And I plan on taking that belief all the way to every goal, every bucket list item, and even the smaller things like every phone call I need to make to clean up this mess.

Lupus had its two years. It may be stuck with me forever, but I’m regaining my independence and it’s going to need to take a back seat.

I have decided it is ok to be afraid. But I’ve decided that, not Lupus. And I’ve decided it is time for my fight to take a different turn. First I fought for my health, and while that fight will continue, I now have the strength to fight for my family and to make sure we come out of this whole and with everything we need be it financially or emotionally.

Yeah, I’m getting better alright. Because I can feel the butterflies in my stomach, just like I do when I’m ready to take on a huge project I KNOW I can rock. So while I might continue to be afraid, those fears should pale in comparison to the ones being felt by all those on the opposing end of my calls. On the opposing end of my emails. My letters. My fight to change this so no family has to go through what we went through just to BE SICK AND GET WELL.

I know I still have a long road ahead of me, but there is light. And I’m heading straight for it with those I love right by my side. Either join us or get the hell out of the way.

It’s going to be ok. 

I don’t know how many times I have said that but wasn’t sure if it was true.

I don’t know how many times I’ve chanted it out loud, in my head, to you, to the kids, to family and friends.

It’s going to be ok. 

This time I meant it.

My doctor called us over the weekend. Yes, I have the kind of doctor who calls on a Saturday. He’s writing a book and it seems my case is an entire chapter. Or at least it’s working out to be that way as he continues to write. I’ve given him permission to call as he pleases for a variety of reasons, not the least of which is we are helping each other. I help him as he researches and draws conclusions on the hell that is an auto-immune disorder inside my body and he helps me beat it to the ground.

My husband answered the phone on Saturday, and handed it to me with that look in his eye I’ve now come to know as ‘this better be good news or I’m going to throw this phone out the window.’

It’s a look that simultainiously scares and humors me. I’ve learned in these situations I can either panic or I can laugh. My body now responds by doing some odd dance between the two.

After exchanging pleasentries Dr. C. asked me some specific quetions about my pain and how it has been responding to treatment. We’ve agreed it’s been hard to tell truly how well I’m doing pain wise because I am on some fairly hard core pain medication to keep me comfortable. But since the steady drop in my inflammation numbers, has come a steady decline in my ‘need’ for my pain meds ‘on time’ or ‘exactly’ at six hours.

If you have ever had to take pain medication for something that hurts very badly you know what I am talking about. It hurts so bad the pain creeps back up , slowly, before your pills are anywhere near the six hour mark when you can take more…and you stare at the clock thinking you will, in fact, die if time does not tick down faster.

But I don’t watch the clock any longer. And as my inflammation remains on it’s downward slide, I’m not anxiously awaiting the relief of my medications. I need them, but I no longer anxiously await them.

As Dr. C. and I talked about exactly when my pain began to change, etc. I noticed he was referencing recent lab results and sensing I was perking up he mentioned my numbers were now all rather ‘normal.’

Normal? You mean high normal like we discussed the other day? You mean normal for a Lupus patient? You mean normal normal?

Normal. Close to zero on some. Zero on others. Like a regular person.

Now, we talk about my ‘sed rates’ and my ‘c-reactive protien’ and all these inflammation markers until we’re blue in the face at each office visit. These and many, many others. Never have the words ‘normal’ or ‘zero’ ever been used. Ever.

Sensing I was annoying the good doctor by answering the questions for his book as best I could but by following each answer with ‘so you mean my inflammation markers are really that low?’ he finally said to me ‘Please, know this:  we still have a long journey ahead of us, but as of right now your numbers look good. We’re making great progress…’ and then he trailed off telling me about how he’ll speak on this in England soon and he only has an hour and while he talked my mind was in this jumbled state of questioning if what he said could really be true.

Had my inflammation really gotten itself squashed down that far? With the inflammation under control, the other medication can now be working double time- and THEN we get to lower the steroids EVEN FURTHER. I might lose the weight soon. I might look like myself soon. I might be able to exercise and go back to work and…and…

Erin, have a Happy Mother’s Day. Tell your family what I told you about the labs. Rest up. You still need rest, we have a lot of work to be done still. And yes, your numbers are really looking normal. 

Tears in my eyes I hung up the phone and nearly floated down the stairs to tell my husband

It’s going to  be ok.

We’ve found a way now to keep the inflammation down. The drugs are working. We get to try and lower my steroids again tomorrow.

It’s going to be ok.

Crying I knew I wasn’t just wishing it to be true as I said it this time. I feel the change in my body. I feel the change in what I can and can’t do during a day. Sure I need to build up my strength after two years of surgeries and rest…but I can do that. I can DO THIS.

It’s going to be ok. 

I can get myself back in shape once we get these horrible drugs out of my system, making me look funny and feel horrible. The side effects will lessen as we taper down. I will, slowly, be able to do more than walk to the end of the block with the dog. I’ll be able to handle cooking dinner AND cleaning it up without exhaustion and pain.

But more importantly I’ll be able to repair the battle wounds on those I love who have been deflecting all of life’s usual bullshit from getting to me so I can heal.

It’s going to be ok.

I’m going to reclaim my life. It may not be the life it was before Lupus, but it will be a full life after Lupus. One in which I can be myself again- that independent self that is thankful to have had the amazing support of her husband and those who love her- but who wants them to rest, and let me carry the load for awhile.

That is, after all, how marriage works. How family works. How friendship works. And now I will work hard to continue to heal. To continue to keep those numbers down. To continue to taper off the steroid. To continue to get out of this bizrarre body until I feel comfortable in my own skin again. To make our house WHOLE again, as we regain control, or at least regain a portion of control.

It really is going to be ok. 

I accept it will never be the same, but I am stronger now than I ever was. My family has been through hell and we may be weak and weary, but when we clasp hands and laugh and smile together there is NO stopping the four of us.

It’s going to be ok.

 

 

I have mixed feelings today. My emotions are all over the place for a variety of reasons, not the least of which is I am making progress in my fight.

But with that progress have come so many casualties I feel like I would have rather of lost more organs or had another stroke. Celebrating seems out-of-place when so many around me are hurting from the wake that Lupus has left.

Don’t get me wrong, we will celebrate eventually. It’s just not time yet. I’m only beginning to feel better. beginning to be stable for more than a month here or a week there. Celebrations seem to be for people who have this shit so far,far past them they can’t even manage to see it in their rear view mirror, the lights faded into the darkness. So far past them it’s turned off some other road or path, leaving Lupus far, far behind and lost on the side of some unmarked road, hidden and tucked away behind some trees and bushes.

It’s more like we’re still working hard to stay ahead of Lupus while it revvs it’s engine, ominously, reminding us all it’s there and ready to slam it’s foot on the gas and flatten us from behind.

Yet we keep steadily pulling ahead. And it keeps steadily falling further back. Slowly. So slowly.

I wish I could say life has been kind as we push forward, gaining distance from this disorder. We haven’t been that lucky.

The bureaucracy that is long-term disability has been nothing short of a nightmare. My doctor has declared that I am unable to work, he’s made it clear – down to the number of hours I can spend sitting here typing. Down to exactly how and when I can drive, travel, shower. Even walk.

We’ve sent lab result after lab result after MRI after MRI. We’ve sent them my doctor’s 30-years of treating patients and how he’s using ME as a chapter in his next book due to the nature of my case. We’ve sent them every drug I am on. We’ve had my neurologist send over my stroke information. My pain management doctor sent over the nature of the narcotics I need- and why that alone should keep me on my butt, and out of the board room. And I say this with every hesitation in my writing because I WANT to work again, and soon…but I now spend an average of three out of five days a week at one doctor or another, and some of those days I am hooked to an IV for anywhere from three to six hours for treatment.

…and I’m supposed to work WHEN, exactly? Between IV infusions and between doses of methadone? Or should I be taken off all of these things I need?  Someone should ask the private insurance company still deciding if I’m ‘disabled’ because they either don’t understand Lupus or the variety of other conditions that come with Lupus or they do understand and just want me to see ANOTHER DOCTOR for a FIFTH opinion anyway. Here, take a look at my calendar. This is April:

You tell me when I can just go see one more doctor…maybe a weekend? Or maybe between IV’s?

Yes, we filed in November and while they have just made the decision to pay me for my ‘waiting’ as they continue to decide on my ‘complex’ case…I get to see another doctor at their request. Because the MOUNDS of paperwork and files and test results aren’t nearly enough for them. Along with my treatments and doctor appointments and my attempt to still be a Mom and a Wife, I’m going to go see a doctor who will see my file…which is the size of your average small car…and apparently try to wade through all 400-thousand pages in one appointment and do what the private insurance company’s doctors have been unable to do since November.

Yeah. That makes a ton of sense.

My point with all this rambling? It was up there hidden, actually, in all my whining.

‘Complex’ … Lupus is terribly complex. It’s never the same in anyone. And I’m not sure society as a whole is taking it very seriously- because they don’t know much about it.

The African-American community seems to know a bit more, because more African-American women are affected by Lupus. Just another reason Maria can call me a sister.

If only it were that easy.

But with this sisterhood comes an attack on every organ imaginable. Kidney failure. Strokes. Heart attacks. Lungs, joints, skin…I can go on and on.

According to my friends at the Lupus Foundation of America an estimated 1.5 MILLION men, women, and children have Lupus in the U.S. But overwhelmingly those with Lupus are women in their childbearing years (that would be me) which SEVERELY disrupts family life (that would be us).

Lupus costs more than $31 billion each year on health care (I’m guessing I’m at least a billion of that) and lost work hours (again, me too). But Lupus research is so UNDERFUNDED relatives to the number of lives it affects. There has only been one new treatment in more than 52  years.*

ONE NEW TREATMENT IN 52 YEARS.

Add to that how this private insurance company is treating my case despite the mountain of medical evidence, my missing organs, and body’s response to Lupus treatment (which is now making progress) and we have a culture that not only doesn’t take Lupus seriously, but doesn’t even fund the research needed to stop this horrible disorder from destroying more lives. More families. Taking more Moms from their kids. Wives from their partners. Daughters from their parents. Loved ones from their friends.

So on this World Lupus Day, yes, of course I want you to donate. But more than that…I want you to tell someone about Lupus. I want you to teach them. I want you to show them. I want you to spread the word. I want you to say listen…I have this friend named Erin. She loves her family. She even LOVES her job. She wants so badly to be back doing what she does best, she can’t even stand it…but Lupus has been standing in the way. Wait… what’s Lupus you say? You’ve heard of it but don’t know?

Lupus is a devastating, life-diminishing and life-threatening autoimmune disease that has a great impact on vital organs of the body including the heart, lung, kidneys and brain as well as the skin and joints. 1.5 million Americans have the disorder, including ME.*

People need to learn more about Lupus so they can teach others. When they see how I look right now, they will understand that I’m not ‘fat’- I am full of life saving steroids. As are millions of other Americans. We are fighting not only the disorder that attacks our bodies, but also (in many cases) our insurance companies, our disability providers, even our mortgage lenders. Because no matter how much money you save and no matter how good your insurance is and no matter how wonderful your employer may be- you still have to pay bills, buy groceries, get kids to school, make lunches, and even be expected to live a ‘normal’ life. Why? Because you don’t look sick. Sure you have puffy cheeks and this odd weight gain around your gut, but maybe you just ate too many Cheetos.

If only they knew you’ve been living off green tea and olives and goat cheese and freshly squeezed juice from your kids with the occasional Blow Pop as a reward on treatment day, because sometimes an IV in your arm three days a week gets really fucking old. But hey, you LOOK like someone who could be fine if she just ‘took care of herself’ – if only it were that simple.

Instead I take steroids, and narcotics, and infusions, and I get permission from my doctor to finally be able to walk my dog to the end of the block. That’s four houses. Whoop dee do, look out world. I might get my body back by 2022 at this rate.

So use this World Lupus Day to explain to friends, family, your Starbuck’s barista, your ex, your dentist -anyone, everyone. Tell them there are over a million Americans who walk among them daily with this disorder that causes horrible pain (imagine feeling like you have the flu every single day and your can’t even lift your arms to shampoo your own hair) and takes their organs and sometimes their lives. Spread the word. Because as my disability insurance company says, Lupus is ‘complex’ but it is also fairly simple: it sucks.

And the more we talk about it, maybe the more people become aware, learn, and we just might find a cure. And that would suck a whole lot less.

*All info taken from the Lupus Foundation of America and their wonderful resources. Go check them out. Please.