Queen of Spain Blog

I’m trying not to worry. I think I have a pretty brain. Can brains be pretty?

I think it’s pretty.

Despite losing many organs, Monday’s TB test and Tuesday’s MRI sucked. The TB test is a formality to make sure I’m healthy enough to start a new drug. The MRI, well… let’s just root for ‘all clear’ .. k?

In the meantime enjoy my pretty, pretty brain.

When I was diagnosed with Lupus in August, my husband and I weren’t exactly sure what to do. We didn’t know much about SLE Lupus (I knew nothing, Aaron knew people died from it) and we certainly felt as if we had zero control over what was happening to our lives. Lupus was in charge.

Enter the LA Marathon, Lupus LA, and fate.

I was surfing, trying to educate myself on the disorder, and I came across a 5k as part of the larger LA Marathon. And there was a team raising money for Lupus research.

In a sea of confusion and having no idea what we could do with this new ‘Lupus’ diagnosis, it seemed like signing up to raise money…to do something positive, gave us some peace of mind. Something tangible we could do to help. Hell, just something we could do, period.

That was in August.

Today Aaron and I have raised over $8,000 and counting, and this morning Aaron ran the race in under 30 minutes. Not bad for a guy who hasn’t been able to consistently train.

And me? Well, I had hoped to be well enough by now to walk the 5k. Unfortunately I’m not. But I symbolically started the race, and finished…even if I sat and waited by the finish line on a nice bench under a tree.

It wasn’t much. Just a 5k and just some fundraising. But it gave us something to hold on to, it gave us something we COULD do. It just gave us…something.

Thank you so much to each and every one of you that has donated to help us find a cure. And to those of you who simply cheered us on.

You still have 90 days to make a donation and might I suggest you make your donation to MY fundraising page, not Aaron’s…because I like winning.

Control.

I would say of all my issues, this is my biggie. This is my albatross and my strength. Ask anyone who knows me and they will confirm I have control issues.

I need to be in charge and if I am not in charge but involved I need to know every detail in order to be comfortable with a situation. If I am not comfortable with the situation, I have anxiety. Or I want out. Or I will make that situation implode, so I can take over or be done with it.

As we all know, with Lupus I have no control. I’ve been left out of every decision this disorder makes from taking my uterus to giving me a swollen body. My entire self has been shifted on the outside and it’s startled me so much I can’t catch my footing.

The loss of control has rendered me beyond off-balance and pushed me to an edge. I don’t recognize myself physically, and I’m starting to not recognize myself mentally. As I admitted to a friend the other night, I am lost.

You can’t just go from traveling the country speaking to audiences, appearing on cable news shows, sitting down for meetings in the West Wing to staring at your computer screen playing Angry Birds and watching Gilmore Girls and NOT have some fall out.

I’ve been struggling with how to regain myself. How to find me in these endless days and nights of doctor waiting rooms and the daily school pick-up and drop-off routine.

I find glimpses of what feels like me here and there. Writing helps me remember who I am and what I do. Cooking dinner for the family, when I’m able, makes me feel useful. As if I contribute something while otherwise being a slug on the couch or in bed. When I finally went shopping to accommodate my new body I felt like maybe, somewhere in there, I could find a way to scream the old me was in there somewhere with a pair of shoes or hat.

But none of it has been enough. I keep swirling down this whirlpool of suck that drags me further and further away from me. And I need to find a way to take some control.

Part of that is in my current state of style. In short, there is none. I grabbed a few tops that fit and didn’t look horrible, because all of this is temporary. But as the days turn into weeks and the weeks turn into months, I feel like I can’t even express myself in the way I look, let alone the rest of my life.

Cue the ideas of dying a purple streak in my hair. Buying funky scarves. Perhaps relishing my moo-moo like state and finding some crazy plus size clothes that scream ‘FUCK YOU WORLD YOU HAVE NO IDEA WHO RESIDES IN THESE SWOLLEN CHEEKS.’

But in all honesty I have no idea where to begin. Or how to do that. Or how to even start. And by starting, does that mean I am forgoing the hope that this is all temporary? Because the idea of this lasting awhile makes me want to run straight off that edge I’m teetering on and jump.

Then I think maybe if I just embrace it, I’m taking control. If I just say ‘Ok, this is how it is right now, and I’m going to live it to the fullest instead of crying and complaining and moping about every new side effect’ … maybe that will make this all more tolerable. Because let me tell you, this ain’t easy to freaking tolerate. Not for me, not for anyone around me. And no one is saying it should be. This is not some picnic that we should all just sit around and hug and love and celebrate. This is hard.

But it’s how we handle the hard. And right now I am not doing such a great job.

So tonight I’m shopping online. I’m thinking about ways to take some control over my body. I realize right now Lupus is ruling the inside…but if I could just rule the outside a bit, maybe I will feel more like myself and less like the whore disorder is winning.

I welcome your ideas.

*My apologizes to Janet Jackson

This is what three rounds of injections to your spine and neck will do:

To add to my sexiness as of late, I am now a hunchback.

Lovely.

Of course that would be the only tale I don’t know very well, so I should probably read it…or watch the Disney version. I’m guessing it didn’t have anything to do with a woman on the ass-end of her 30’s struggling with Lupus, did it? No…ok.

I’m also having these other awesome side effects, like muscle spasms and charlie horses almost every time I stretch anything. If I reach for something, charlie horse in my arm. If I chew, muscle spasm in my jaw. If I YAWN, charlie horse in the muscle under my chin. If I throw up from the kids’ stomach flu, spasm in my chest, back, and stomach while puking.

I also have swelling from time to time that pretty much renders my ankles and feet useless. And strangles my rings onto my fingers.

And then there is the “dead” feeling in my arms and legs that just hits out of nowhere. Suddenly my arms are 500lbs and I have to hold one arm, swing it, pick up my drink, and with one arm supporting the other take sip.

Oh, and the steroids are not ONLY making my face and stomach grow (no really, it’s an oddly distributed weight gain) but making hair sprout everywhere but my head. Constant tweezing people…constant. And when that isn’t enough, I bust out my husband’s little scissors.

This really is no way to live. I see my doctor Monday, and that’s exactly what I plan on saying. This really is no way to live.

The treatments are becoming worse than the disease.

There is hope though. The FDA has approved the first new Lupus drug in over 50 years. Maybe this one will make me skinny, my hair shiny, and my skin perfect. Or maybe it will give me horrible gas and cause my nose to bleed 24/7. Who knows.

In reading about the new drug, however, I was disturbed at some of the throw away lines reporters were adding to their pieces like- “the potentially fatal Lupus” and “a 10-year survival rate for patients with Lupus is now expected.”

Which makes me pet my neck. My swollen, swollen neck. And pet my belly. My swollen, swollen belly. And pet my cheeks. My swollen, swollen cheeks. And breathe. And thank modern medicine.

My kids got the stomach flu over the weekend. Which normally wouldn’t be such a big deal in life, except it came the day after a procedure to reduce inflammation in my spine.

Now I could have easily, and justifiably passed off every minute of puking and pooping goodness to my husband. In fact, I probably should have given the swelling in my neck and the need for rest. However you really can’t deny the Mamma Bear instinct.

I won’t bore you with the harrowing night of holding one child while she puked and rubbing the other’s back while he puked…but I will tell you I never used a pain killer and I never once thought of my neck and spine.

Not once.

Well, that’s not entirely true…somewhere around 6:30am when the kids finally collapsed asleep it briefly dawned on me that I might want to get out the ice pack, but that idea was quickly overcome by exhaustion as I drifted off to sleep.

I spent 14 hours taking care of my kids, I felt like a superwoman, and I didn’t once think about myself. I wasn’t stuck on the couch with my bottles of pills, kids being delicate as they hop up to hug me. I wasn’t being told to rest. I wasn’t feeling the familiar ache as my pain meds wore off.

I was in uber-Mom-mode. My kids needed me, and there was no time for Lupus. None. I was stripping sheets, washing towels, holding hair, rubbing backs, carrying to the toilet, wiping floors, wiping brows, administering ice chips, and kissing foreheads promising the morning would bring relief.

What I didn’t expect was the morning to bring relief and a new perspective.

I can do this.

I could have burned my house down today because of this thing they call the ‘Lupus fog.’

I innocently began to boil eggs during the afternoon, and then absent mindedly left to pick up my son from school. Eggs on the stove, boiling away.

And they had been there awhile. It’s not as if I turned them on, forgot for a bit, and then remember. No…I turned them on and forgot forever.

Somewhere between home and school, I realized what i had done and grabbed my son as fast as possible, mentally went through all the people I could call to break into my house and turn off the stove, and sped home quickly.

A few blocks from home I approached the usual corner stop sign, looked cautiously and rolled through, and immediately saw lights behind me. I deserved the ticket, no doubt, but I also explained to the officer I had left boiling eggs on my stove and had been gone over half an hour. If he could just follow me home, write me the ticket at home, that would be swell.

The LA County Sheriff’s Deputy said ‘this will only take two seconds’ and proceeded to make me sit in my van and ponder if my house was on fire.

Once the ticket came to the window (which was well over two seconds) I asked the officer to accompany me home, fearing I would find smoke billowing out of my house and having a cop there might be a nice help. He skeptically agreed and tailed me back home.

I pulled up. I ran in. I found the eggs with half an inch of water left in the pot, boiling away just fine. I dismissed the cop (who probably thought I was lying now). And gave a sigh of relief.

But as I sit here, going over events in my head, I’m feeling helpless. I’m feeling like a senior citizen who needs supervision. I’m feeling like my ‘Lupus fog’ could mean next time the house does burn down. I forget to pick up a kid. Or worse.

I feel defeated by this inflammation that they are keeping from my brain, but maybe not well enough.

Thursday I undergo another series of shots to knock out this pressure. It has to work. It’s the third and last in the series to help relieve my pain and relieve the inflammation that was creeping too close to my noggin. But I have horrible fears it’s not working and that I will need a babysitter like a toddler needs constant supervision.

I don’t want to forget. I don’t want to forget a single thing. Ever. And I fear I’m not only losing that battle, but I’m endangering people and property in the process.

Maybe this was just a fluke. Maybe I just forgot like a regular person just forgets. But I can’t be sure. At least not yet. In the meantime, feel free to check on me and make sure I’ve turned off the stove, picked up my kids, and otherwise done what ‘regular’ people do. And I’ll be writing a check for that ticket, because thankfully money and my once clean record were the only things lost in today’s fog.

I just spent a week in a wheelchair, where when people looked at me…I could justify being out in public. I could justify it because I had the chair. It meant that when they saw my face, they knew something was wrong…even if they didn’t know what. It was a symbol that potentially this person here isn’t right.

It was my crutch and my excuse that it was ok to be out with other people staring.

I need that crutch, because all I want to do is hide. I want to lay in bed and never leave. I’m trying so hard to not care, but every day my face gets more round and every day clothes don’t fit and every day I worry that even the people around me don’t want to look at me anymore.

Even the kids are wondering when I will be ‘regular’ again. And I don’t have an answer.

Tonight my daughter wanted to play dress up for the Oscars, putting on her fancy dress and asking me to do the same. Of course I have nothing in my closet to fit my current frame…so I found a wrap dress that didn’t fit but at least could act as a robe of sorts to make her happy. We added earrings and necklaces and she very sweetly looked at me and said ‘when will you fit into your pretty clothes again, Mommy?’

I’m not sure honey, but we’re happy I’m not in the hospital. And I can get other pretty clothes. Besides, look at how big I am smiling at you and how much fun we’re having. Who cares what we look like- we’re STUNNING.

And she loved that word, and repeated it back to me several times as I tied her bow.

Stunning Mommy, yes we are just stunning.

But inside I wanted to crumble. I didn’t feel stunning. Which made me angry. Angry that I care so much, angry at this disorder. Angry that I feel embarrassed and humiliated by how I look. So I did what only I know how to do- suck it up, be brave, take control. And I tweeted a photo of my face. And then I tweeted a photo of my daughter and I. I FORCED myself to show this monstrosity of a body to the entire world so it was impossible to hide. I gave myself zero shelter so I could face this stupid vanity issue head on.

And of course many of you were very kind, telling me how beautiful I looked and what not. And I truly appreciate your efforts. Of course my point wasn’t to win compliments to make me feel better, it was to make sure I couldn’t crawl back into a dark corner and not emerge until this steroid treatment was over. Because I want to crawl so badly into that corner. I want to hide under my covers and cry and stay there until this is over. I don’t want to see anyone. I don’t want anyone to see me.

I don’t want them to see how I struggle to walk, feeling every new inch of my body as I move. I don’t want them to see my protruding stomach, and how no matter what I try, I can’t hide it under ruffles or baggy shirts. I don’t want them to see my double chin, and worse yet, to see how it spasms when I yawn…another nifty side effect of the meds i am taking.

I am a grown woman and I know full well that none of this matters. I blogged it already, we’ve discussed vanity at great length. And I’ve heard everything from what I am teaching my daughter about beauty (and believe me, she will have no idea the struggle I have with this until she is old enough to read my blog) to letting my inner beauty shine to letting go of this notion that any part of my worth should be wrapped up in how I look.

And I can be brave, and show the world…but that doesn’t stop the world from looking. And I know the world is looking. And judging. My bravery only goes so far though. My insecurity kicks in somewhere around ‘SCREW YOU I WILL SHOW YOU’ and ‘I DON’T CARE WHAT ANYONE THINKS!’ so I push it further and I sit here and write. I write honestly, and without censoring, and with tears streaming down my face for the fifth time in the past hour. I just watched a parade of beautiful women in amazing gowns, and more importantly I watched men glare at them…as they should.

Let’s face it, men aren’t going to glare at my inner beauty right now. Something that is thankfully lost on my daughter as she repeats to her brother that we’re having fun and that’s stunning.

Something I am striving to teach her, and will hopefully believe before this is over. And until then, I’ll just continue to be brave so hiding isn’t an option.