Queen of Spain Blog

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.

Purple is the color of royalty.

It is also the color of Lupus Awareness.

May is Lupus Awareness month and I’m kicking it off with a brand new purple mani/pedi.

Next weekend, my daughter and I will go get purple streaks put into our hair (possibly my son as well) and on May 20th, Aaron will be running his very first half marathon which isn’t an official Lupus run, but we’ve decided to make it our own Lupus run.

Why?

Because we’re raising money for Lupus research, education, and advocacy. Life-saving research, and that is no lie.

I was diagnosed in 2010 and we are still working to get this disorder under control in my body. We are close. We are so, so close. But understand this has been the hardest, most frustrating, most humbling, most earth shattering thing I have ever done…and I have not done it alone.

Aaron and the kids have been there with me every step of the way and have honestly had the harder job. My job? My job has been to rest and to lay around a lot. I mean a lot. Much of the time with an IV in my arm giving me infusions of IVIG and, now, Rituxan.

Life still goes on around us, despite all of my doctor appointments and treatments. There is still laundry to be done, lunches to be packed, dishes to be washed. And I spent the first year or so of this diagnosis fighting back the wrong way, making myself sicker.

I wanted to still be the best Mom, Wife, Co-worker anyone could ask for despite losing organs left and right. Another reason Lupus education and advocacy is needed. So other women and men do not make the same mistakes I made.

I am learning to live with a chronic illness and admittedly suck at it, but I am getting better. But it has been very hard, and there has been a lot of damage along the way.

More people need to learn about Lupus. More families need to hear our story so they don’t do what I did, and everyone needs to donate what they can so a cure can be found.

You have also helped me and my family along this journey. Lifting us up in spirit with laughs, with love, with meals, with hats, with gifts…for what seems like so long now. But that is the way of Lupus, it does not go away. It does not disappear after surgeries and medication. It is always there.

Which is why I am thankful YOU are always there too.

So Put On Purple, and continue to walk this journey with us.

With all my heart I thank you because I want to be around to be a mother to my children, a wife to my husband, and a friend to you.

Growing up Catholic I was always fascinated with the idea of limbo. Of course in our catechism lessons it was mostly about babies. Babies that weren’t baptized went there. In my mind it was this cloud-filled place where all these naked babies just sort of floated around.

You can tell I got a really fantastic Catholic education. Limbo = naked floating babies.

Anyway, I feel like life at our house is this big cloud and we’re all naked floating babies. I’m just really, really, really tired of floating.

We’re waiting for news on my disability status. We’re waiting for news on my social security status. We’re waiting for news on a possible home loan modification due to my disability. We’re waiting to see if my lab work continues its current trend so we can get out of this cloudy, hazy, floating naked baby place.

It’s not horribly unpleasant here in limbo. Which is pretty true of how I pictured it back in catechism. There are way more doctor’s appointments in limbo than there should be, but that involves waiting rooms and really, limbo is one big waiting room.

I need to find a way to push our lives out of this huge waiting room though. Sure we might be stuck here…ok, so we’ve been stuck here awhile. But who says limbo has to be just a boring doctor’s waiting room? Or floating naked babies in the clouds?

Life goes by even if you are stuck in limbo. And life is not slowing down. We just celebrated our kids’ seventh and ninth birthdays.

I don’t want them to remember these years as the times when they simply went to school, dealt with waiting room after waiting room, mom’s track marks from treatment, and the constant ‘sorry honey, I’m just too tired tonight.’

So I’m making an effort to do the small things I’m capable of doing. I may not be able to go more than a few houses, but I can walk the dog those few houses with my daughter for ‘girl time’ and talk about ‘girl stuff.’ We walk slow. We walk steady. And I make sure to listen to her every word, even if it’s about wanting to buy her friend a stuffed chicken for her birthday.

And while I can not STAND how much my son LOVES his Nerf guns, I will sit and help him make an ‘ammo box’ and a target so he can get better at ‘winning the wars with the guys at school.’ I will listen, and try my best not to lecture him about the evils of firearms, as he tells me all about the difference between each gun and why using one is better than another if you are playing in the front yard as opposed to the back yard. Who knew?

I continue to cheer on my husband as he trains for more races. Coming up, a fun mud run and then his biggest challenge yet- a half marathon. In a way I feel like he has busted out of limbo for both of us by turning his body into what my body currently can not be, can not do, can not even dream of just yet. My pride eclipses my jealousy by far as he actually wears his running shoes down to nubs by clocking more miles than I could even dream about. Yet even with all his running, he’s running inside these clouds that trap us all as we continue our wait.

I’m not sure if I’d prefer to run or float at this point. I just want to be present in each moment. Laugh harder. Laugh longer. Hell, some days just laugh at all.

You’d think with all these floating naked babies there wouldn’t be so much stress in limbo, but you’d be wrong. Waiting might be the most stressful activity of all.

So it’s time to learn to live in limbo, if we’re parked here awhile.

Laughter. We’re pretty good at that around here when we want to be. I have a feeling we can harness the power of laughter to keep us giggling here in limbo.

Lightheartedness. This one is so much harder than you’d think when everything is so very serious. Disease. Money. Stress. It doesn’t get more real. But I’ve learned there isn’t much we can do about it- so we have to just smile and take it one day at a time. When I think of it all together it could damn well kill me…so I have to stay lighthearted. I must. Everyone in the house must.

Life. We only get one. This is IT. We must have fun with it. FUN. Not stress. Not freak out over everything. But this is it. This is all we’ve got – and there is no way in hell I’m going to spend my days here crying and worrying. And believe me, I am the QUEEN of worry. But I have to let it go.

Let it go. Limbo has naked babies floating on clouds for crying out loud… how can you NOT let it go?

Love and love HARD. I’m talking so hard that I’m trying not to smother. Which is part of limbo’s problem, too. When it feels so scary and stressed, you hold on tighter. So I’m learning to loosen so we can love, love hard, but love light as well. When there is so much stress in one place, you learn that even the love can be a reminder of responsiblity and how badly you want it all to work out so everyone is happy and no longer in limbo, stressed.

Let go of limbo, Lupus, and keep laughing. I’m feeling it inside me…the change. The stress has to be gone so I can heal and the drugs need to work and I believe ALL of those things are happening. I truly BELIEVE. So I am laughing more, despite limbo. Despite the idea that it’s a scary, unknown place. Because I’m refusing to believe it’s scary and unknown. I’ve known it my whole life- it has naked babies! And clouds! And right now it has all those I love, and there is no way that is scary.

See, I knew all that catechism would come in handy eventually. Even if I kept getting kicked out. (true story…every Monday night, Erin would get kicked out of class for asking something crazy like ‘but who made the God who made the God who made the God?)

Clearly I was just channeling these wonderful nuns you’ve been hearing about on the news. I bet you they laugh. And love.

…and live. Even in limbo.

You may look at this election cycle and see nothing but hate.

You may look at this election cycle and see nothing but greed.

Racism.

Socialism.

Communism.

Mud slinging.

Lack of compromise.

Lack of compassion.

Lack of understanding.

You may look at this election cycle and see no hope for bipartisan answers, an end to stalemates, an end to this hostility and violent, sexist, nasty rhetoric that has taken over the media, some candidates, and the discourse in our great nation.

I look and see something totally different happening…and it’s starting with a horrible disease, two very different families, and a box of snails.

…and all of Erin’s readers cock their heads sideways and go ‘huh’ simultaneously…

On Saturday, somewhere around 3pm-4pm Pacific I’m going to pop my moon-face, ravaged with steroids and the side effects of battling Lupus into a chat with WTIC NewsTalk 1080′s Jim Vicevich.

He’s one of those conservatives I complain about all day and night.

He’s also a fellow foot solider in the battle against Lupus, and we fight together.

Jim is raising money to build the first ever Lupus Center for excellence in Connecticut. A treatment center that will help everyone – from raging liberal, to conservative, to those who don’t give a flying flip about politics, to children who have been affected by this horrendous disorder that has turned our lives upside down. Yes, I said OUR lives…Jim has Lupus too.

Now I don’t live anywhere near Connecticut. I live in Los Angeles. But nothing, and I mean nothing, would please me more than to be there when Jim breaks ground on this center that I KNOW will help those like us who need it- because Lupus knows no political party and certainly does not discriminate between Republican or Democrat.

And that’s where the snails come in. My children have declared Saturday ‘Snupus’ Day… because tonight, as I took my very sore body onto the patio to try my best to pretend to NOT be in pain while they play, they found a snail family. A Mamma, a Daddy, and two baby snails. My seven-year old daughter declared the Mamma snail must have Lupus too…and she MUST be getting better because LOOK! She climbed up the SIDE of the bug house and drank some water.

This was a clear sign Lupus was being beaten back by every mother and every father…snail or human…progressive or conservative.

I need to make my daughter’s dream come true. I have lost 13 inches of my colon, my gall bladder, my cervix, my uterus, my ovaries, have suffered a stroke, a T.I.A., and continue to battle this disorder to KEEP the rest of my organs so my son and my daughter can find many, many more snail families on our patio and name them and learn about them and then set them free so happily ever after can occur.

Jim and I need your help to do that. We need your help in Connecticut and in Los Angeles. In my hometown in Michigan where I was raised and in Florida where my parents now try to make enough of a living to buy plane tickets to fly out to help as much as possible. And even in the wilds of West Virginia where my in-laws educate their friends and family about what Lupus has done to their daughter-in-law, how it has affected their son and their grandchildren, and how Lupus does not care where you were born, who you married, how much money you have, or how you vote.

Lupus takes a toll on spouses, children, caregivers, friends and family who love you and have to watch you go through something so horrible and yet that is about all they can do: WATCH.

Jim has found a way, in Connecticut, to do more than WATCH. So I am behind him 110% despite his totally ridiculous political leanings. (oh come on…giggle with me a little…) Because Lupus is NON PARTISAN, and when it comes to fighting Lupus…we are ALL NON PARTISAN.

And maybe, just maybe, if we can start with Lupus…we can move on to other things. Today Lupus, tomorrow the economy, health care reform, and beyond.

Yes, that’s the progressive dreamer in me showing up. But I’m not willing to give up on any of those dreams, and I expect you to honor them by at the very least honoring what my children have dubbed ‘Snupus’ Day.

Join the fight. Say hello to me via our video chat on Saturday. Go ahead and ask me anything from Lupus related to questions to politics, I don’t mind, so long as you donate to help make our Non-partisan dream come true.

Let’s find a cure for Lupus together.

*comments are OFF on this post…let’s not argue about politics, let’s cure Lupus