Once in a while

I was driving along the ocean the other day, and in typical SoCal weather – it was gorgeous. The May Grey had cleared out, bringing in blue skies, bright sunshine, turquoise water, and warm sands. I could see the cars vying for parking along the PCH, and the crowds were slowly building on the shores – brightly colored beach umbrellas and towels, matched with colorful swimsuits, cover-ups, flip flops, and board shorts. Surfers jogged towards the ocean, boards propped over their heads, and though it was only 11 am, I could already tell it was going to be a beautiful day. Missing the green arrow from the PCH to Tamarak wasn’t all that bad – with the jeep idling waiting for my turn signal, windows rolled down and cars driving past – I could still feel the ocean breeze, hear the waves as they crashed ashore.

I wanted to go.

It’s been a long time since I’ve wanted something so much… an insatiable yearning to be outside, toes in the sand, feeling the warmth of sun on my skin, the salty ocean in my hair. I remember how hot the sand would get, cooling off with water and diet coke from the cooler – and when the blue skies and hot sun were too much, running into the ocean, feeling the swell – the push pull of the waves – tasting the salt, it was marvelous. Life in its simplest form, yet completely fulfilling.

My current reality is very different.

And usually I’m pretty good about focusing on what I CAN do, remembering all the things I’m capable of, and otherwise adapting in creative ways. I focus on photography and music, spend time with amazing friends and the Yank when he’s around, throw myself into various projects around work/school, etc and try to stay as healthy and active as I can. I find creative ways of covering up… long UV protecting sleeves, hats, and kerchiefs. I wear fingerless gloves on hikes, long pants ALWAYS, and of course – compression socks. It’s not always pretty, but it’s the compromise I make in order to do (some of) the things I want to do.

With that in mind – I was just really sad. Constantly wanting to do something, to be someone that – let’s be honest – that I’m just NOT anymore is really sad. Like – heartbreaking.

It sounds so superficial – but I would just like one day ONE DAY where I could feel normal. No am and pm medication, where I  would NOT have to cover up, and I could go compression-sock free. Where my skin wouldn’t burn when exposed to the sun… not just sun burn, but break out in angry red hives that leave me prickly and painful, and long term can make me really really sick.  I wouldn’t have to worry about my knees and arthritis while running… I wouldn’t be worried about my PT/INR and too-thin blood – so biking would actually be enjoyable. I would enter a race -any race – because racing makes me feel alive and it’s just what I know, who I am. I would wear a summery dress and flip flops – to hell with my my body, sunlight, and post-DVT leg. And the things I do wouldn’t have to be tailored around the horrible, fucked-up, cruel, occasionally-soul-sucking lupus that I have.

In thinking about this post, I was trying to find a picture of me at the beach pre-lupus. I couldn’t – it’s been that long and my old pictures and files are on an external hard drive.

I never thought I would have to think about something like this. But life changes and before we know it, we’ve walked in a completely different direction… off trail and in unfamiliar territory. The truth of the matter – this IS my reality and I’m still finding my way. Some days I’m okay, and other days it just really bothers me. I guess this was one of those days. I try to keep my rants not so, um, rant-ish. Oh well –

N’s flight was cancelled today, so he’s coming home tomorrow. Naturally.

Love it while you live it – please. Because you never know when it will be gone.



5 thoughts on “Once in a while

  1. Marit, my heart breaks for you and what you’re going through. You are a warrior of warriors. There’s few people I know that live as deeply and truly as you. Though a few states away, you are in my thoughts all the time.

  2. Im going to have Rich read this bc he’s far less bitter and angry than I am
    About Cancer. If its any consolation I’ve learned alot from both of you. And being a melanoma survivor your sun worries are also quite close to home. You are not alone even
    If that doesn’t make each day better:)

  3. I’ve been thinking of you as we approach our two-year anniversary. You’re doing an amazing job focusing on the positive in life as much as possible. Hang in there.

  4. Maritko, holcicko moje, I have no words to say how I feel, and I cannot even begin to imagine how you feel deep down inside about this loss. Someone left a message where you were described as a warrior of warriors. You are always the one who leads. The one who understands, the one who comforts. Wonderful as this is you are for the most part alone. Let me understand, let me comfort, let me share this with you. I love you!

  5. I get it! It is nice to see others having to vent and express how much lupus sucks! Today I SHOULD be completing my first iron distance triathlon but instead I am zooming around in a wheel chair thanks to a lupus flare up!

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