On my daughter’s 6th birthday, I began to write again.

My brain isn’t doing exactly what I want it to do. Well, it is.. but it’s tricky. I’ve written several blog posts over the course of the past week and all have such glaring errors I had to just shut down my computer in frustration.

But with that frustration has come two weeks of energy. Of feeling good. Ok not good, but functioning. While my brain plays catch-up, my body is saying RUN RUN RUN GO GO GO. So I am playing this strange balancing game between a body that is finally willing to do more than sit, and a brain that is fogging over from time to time, forgetting where it is supposed to be and what it is supposed to do.

It’s frustrating, to say the least.

The past 10 days have been such a rollercoaster it’s hard to know where I stand. What I do know is regardless of what I do, the entire house feels the ramifications.

Even though I’ve been able to do more- from attending a concert to making home-made baked goods for both the kids’ birthdays- we haven’t gotten a hold on this active flare or this inflammation, and we’re still struggling with the news of my ‘stroke’ … so it’s like walking around in this half-daze of cautiously optimistic and waiting to be hospitalized. And the kids, despite our sheltering, have obviously caught on.

Tonight’s games and fun included ‘Pet Hospital.’ Of course my kids can’t just play normal Pet Hospital…they need to hook turtles up to elaborate life support systems.

Healthy play as they work through the chaos and ups and downs of Mom feeling good and feeling bad and on the couch and playing catch in the backyard. It must be how they deal and make sense of me one day being SuperMom delivering 42 cake pops to Kindergarten, just a week after delivering 20 home made butter beer cupcakes… and the next unable to lift her legs to get upstairs.

Consistency. Normalcy. How I crave these every day things. And now, my one release…my one outlet, is being slowly striped away as if it were just another organ. Just another casualty of this disorder.

I will not give up writing. Even if it takes me all week to get a post out. Even if I have to think way harder than I used to just to make sure this sentence makes sense.

Don’t get me wrong, it’s not bad. Not…bad, bad. It’s hard to explain. It’s as if everything is normal, but just…off. It’s not exactly normal. Something is just not right. If normally my life sits at five, something – presumably the stroke – put me at five point two. Just a smidge off. Walking up the stairs, it’s as if I have to think so my legs don’t miss that rhythm you need to go one foot..then the other. But not by much, just by a tiny smidge.

I’m not afraid though. I feel strong. I feel like myself, even if it’s only inside my head and I can’t get it all out. I also know this is just another stage- one I have no doubt we will pass through and conquer. I’ll see the neurologist soon, we’ll do what needs to be done. And I will continue on this path of finally feeling functional.

There will be more home made birthday cupcakes. More concerts. More birthday cake pops. More games of catch in the yard as my daughter finally nabs that popup and my son whips the ball harder than he should just to see a weed break apart in a million pieces. More walks around the block. More being able to get out of bed and pack lunches and more talks to reassure those who love me that I can, in fact, drive myself to the doctor.

More…just…more.

And I can live with that.

I found out on my son’s 8th birthday that I have inflammation on the right side of my brain and at some point, I suffered a small stroke.

Apparently this is typical of Lupus.

I could hear my doctor talking, and I was writing down what he said…but I couldn’t get my mind past words like “stroke” and “right side of brain” and, well, “stroke.”

Maybe it didn’t help that I was scribbling notes on construction paper. Using crayons.

The doctor talked about things like my recent forgetfulness and coordination issues. The trouble and pain I’ve been having in my arms. Legs. Worse on my left. Those days when my left arm feels like a dead weight. The past weeks upon weeks where I swear I can’t see as well as I used to or misjudge the edge of the bed, each time bruising my left shin.

Sigh.

The real kicker here? I’ve felt better this past week. Better than I have felt in a long time. Figures, right? Luckily feeling well means I just have renewed energy to put on my battle gear once again. Not that I ever took it off. Damn, I was really hoping to take it off soon.

Eventually.

In the meantime, I’ll continue to write down everything so I don’t forget. I’ll visit more doctors tomorrow, adding neurologist to the list…and I will continue to focus on the things around here that really matter. That newly minted eight-year old, the soon-to-be six-year old, their Dad, and all the parts of my brain still capable of feeling their love.

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.