Coming Up for Air

Coming Up for Air

It’s common in my life to go for periods where I feel like I’m swimming underwater. Life is going on around me and I’m aware of it and functioning but it’s all kind of a blur and I can’t hear very well or retain anything. (is that old age? Sweet Jesus, I’m 38!)

You’ll be happy to know I’ve come up for air.

All of my tests came back “normal” from my visit to the rheumatologist, which you think would be great but my issues continued. There was literally the equivalent of a “shrug” on the phone when I talked to the physician’s assistant. Super helpful, thanks!

After scrutinizing my meds, I decided (notice the word “I”) to tweek a few things and voila, instant success. So now I feel the usual crappy instead of extra extra crappy with crap on top. SUCCESS! No really, I feel triumphant.

Things are finally settling down with the return to school and we’re getting into the swing of things.

:::insert contented sigh:::

HJ has been talking about Halloween since the beginning of August. Daily. And at length. She changes her costume idea every half hour but I’m sure it’ll be some variation on mermaid/zombie/pop star/alien. She flips right to the adult section of the costume catalog and sighs dramatically, “The adults have all of the GOOD costumes!” And by “good costumes” she means the slutty witch, the slutty nurse, the slutty zombie, the slutty doll or the slutty alien.

She sweetly picked out the costume she wants me to buy and wear because it would be PERFECT for me.

Behold:

I know. It’s uncanny, right? I mean, how could my kid pick out the EXACT outfit that I would like to tromp around in at the end of October in Colorado? Hello perfect. Those shorts look comfy too, like I could bend and squat in them. I would for sure wear those again.

A-hem.

The blue eyed devils have been extra cute lately, and by lately, I mean this morning. Ask me this afternoon at 5:34pm and I’ll tell you I never said they were extra cute.

I digress.

Hadley and I are in the midst of redesigning her room and her sketches and ideas are so super fantastical and creative. I love it. I promised her she could do whatever she wanted. It’s going to be nutty, y’all. Must remember it is not my design aesthetic. It is an extension of her personality and creative self. (I’m telling myself this more than I’m telling you.)

We are now to the part where I tell you cute stuff my people said:

• Hadley (9) calls her shoulder blades her “wings” and I love it so much. She knows they are shoulder blades but I squealed with such delight when she first said it years ago that she just continued saying it. I love to envision my little rare bird as some winged creature.

 

• Finn (7) has his share of good ones too. The way he thinks about things is so interesting, much like my darling PGP. This morning he was talking about a costume and told me he didn’t know what the “money temperature” of the costume was but he would find out.

Enjoy this video of Gala Darling’s wedding. I smiled, sighed, teared up, and felt like my heart would burst all at the same time. Don’t you just love love?

Happy Wednesday, little garden gnomes.

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Dear Target

Dear Target

If you have a daughter who is a tween or older and have shopped for clothes at Target, you may know where I’m going with this. The clothes in the newborn to 5T section have THE cutest stuff. And I’m not just saying that because everything is all teensy weensy and cute as hell. No, they use really great fabrics and cute styling. The girls do anyway. Boys clothes are a whole other post.

Apparently, after you grow out of girls 5T though, your option is to start dressing like a little tart, or wear matching sweat suit ensembles, or ridiculous uncomfortable getups from their new Disney Teen line.  Target, who are your buyers? Fire them.

It’s so frustrating. When I’m there to pick up other things, I’ll cruise through the girls section looking for something to pick up for Hadley and it’s soul crushing. Crappy fabric, no imagination and stupid and/or slutty. One may argue that this is “the style”. I call bullshit. Hello Crewcuts? GAP? Mini Boden? Hanna Andersson? (I swear by their pajamas.)

Occasionally they’ll have a guest designer with a collection that doesn’t suck. Liberty of London and the most recent Calypso come to mind, but for the most part, it’s suck city. Target’s tween/teen department needs an overhaul.

HJ likes to dress funky but I still want quality and somewhat classic styling. Plus, she’s a stickler for something being comfortable.  It’s a difficult balance though because HJ is attracted to a lot of the cheezy crap. I’m pretty sure I’ve perfected my facial expression and tone now when she shows me some horrific shite outfit. An arch of the eyebrow and a subdued “Wow!” I can’t squelch her style or make her dress how I want her too. I accept that. There is a happy medium however.

She loves black. What can I say? She’s my kid. It’s my uniform. I struggled with this for a while, thinking, “she’s too young to be wearing black.” But then I deemed that voice stupid and banished her from the kingdom. A recent jaunt to Nordstrom produced skinny jeans, a black cotton sleeveless dress, and calf high black sequined high tops. Worn all together. She was in heaven. So was I actually. She didn’t look like an asshole. And then, the piece de resistance is that my little rare bird hot glue gunned a tiny plastic top hat to a bobby pin to put in her hair.

Oh sweet girl.

I just read this article on HelloGiggles that prompted me to finally write this post. In the article the writer focuses more on the slutty factor, which I see as well. This picture, from the teen/tween section at Target is completely ridiculous. Hopefully the girl on the left is saying “What the hell are you doing hanging out in your bra?”

So for now, as Heidi Klum would say, I’m sorry Target, you’re out.

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You Can’t Change Your DNA

You Can’t Change Your DNA

Had to go to the rheumatologist yesterday, which I always sort of dread. I have an appointment every 2 months so she can keep tabs on me.  There are many things I dread about it, I suppose. The dread doesn’t set in until I get there. I walk in and think “oh yeah, that’s why I’m here.” A reminder that I have this stupid disease, as if I need one. A fear that something else will crop up during blood work or the exam. I vacillate between wanting to tell her about new symptoms and wanting to keep my mouth shut for fear of more prodding or meds. (I usually tell her. I’m a nerdy patient that way.)

The night before every appointment, I update my med list, and type out any and all questions that I have or things I want to say.

I never see anyone my age at the office in the waiting room, a fact I’ve become accustomed to over the years. Everyone is 20-30 years older. I know there are patients my age. There have to be. I just never see them. Is there some hipster rheumatologist they’re all going to where everyone reads DWELL and listens to alternative music?

I was dragging ass when I went in yesterday and told her as much. The fatigue has been grueling lately. (I have been relying on caffeine to fuel me through afternoons.) My hips ache all of the time. I feel as though I am slogging waist high through mud. My mind is foggy and words don’t come easily. That proves to be really frustrating when the word is something like “couch".

She took X-rays and noted that my hips look ok, blood tests will tell more. Turns out I have bone spurs, which aren’t a big deal really and shouldn’t be causing the hip pain, unless they start aggravating a nerve. (If she detects more inflammation, or lupus activity, she’ll have to up my immunosuppressant, which makes me more nauseous than I already am, and more susceptible to infection.)

Because of the pain, she doesn’t want me doing anything with too much impact. “No running,” she said. I have mentioned to her in the past that I have been flirting with running. I envy these people who “lose themselves while running” and find it so “zen”, as well as being a great workout. She’s grimaced in the past and told me to go easy but yesterday she said “absolutely not.” She wants me on the elliptical, as well as keeping up with yoga.

Why was I strangely liberated when she said “no running?” Actually, I know the answer. It’s because I didn’t want to run in the first place. I want the results but I fear the pain it may cause.  I know many runners though and I wanted to be like them. To enjoy it like them. But I can’t. Doctors orders!  No love lost.

On the exam table she examines all of my joints, moving them, bending them, quiet as she moves through this process.

                                             +++

I ask the question I usually ask, ever the good patient, “Is there anything more I can do to move towards a remission?”

It’s been 7 years and no remission. I may never be in remission and I know that.

“Ultimately, there isn’t anything more you can be doing. You can’t change your DNA” she says.

This statement echoes in my head and irritates me. 

She tells me of the clinical trials for an exciting new drug that’s testing really really well. I can’t remember the name. (I’ve heard this before. The last one, Benlysta, which was just approved after 50 years of no new lupus drugs, now is seen as “old news” and “not really effective”)

I ask her if she knows of any clinical trials I would be eligible to participate in.

None, she tells me. Because you’ve had breast cancer.

Awesome.

She orders a copious amount of blood work and sends me to the lab. I love the round, sweet phlebotomist with the Russian accent and sigh happily when I see her in the lab. She’s a master with a blood draw. Can barely feel the needle go in. 

While tying up my arm she asks me if I’m nervous. She says lots of people are nervous and behave erratically because of a fear of needles. (I love hearing those stories for some reason.) I laugh and tell her I’m ok and needles don’t bother me. I relax my head against the wall and close my eyes while she masterfully starts drawing blood and telling me all about her little nephew and how we share a birthday. I love listening to her talk. Accents are like music.

9 tubes later and I’m done. NINE. I watch as she writes my name and birthdate on each tube and think there must be an easier way. Seriously, it’s 2011.

I make a mental note to research blood vial label makers.

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Alive

Alive

Reading the paper this morning, there was an article about marrow donation and this quote jumped out and has been dancing around my head.

“I’m going to have to develop a little more patience with myself and really just enjoy being alive and not worrying about having to spend every moment of every day trying to achieve something.”

So, I will keep that with me today, as well as this video, which I imagine is what the inner workings of my brain look like.

Oh Land–White Nights

 

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