Hustle

Hustle

I’m terribly bored of myself and all of my ridiculous ailments. Being chronically ill makes one insanely self-involved. Let’s just say that there’s more wrong with me and I’m dealing.

Peter Provost is the best man. Pure and simple. And I have the best mom and sister in the world.

I brought my mom to an appointment yesterday and she might as well have been carrying me like a baby. That’s how safe and secure I felt as a 39 year old lady bringing my mama with me. It was lovely.

I talked to Meg recently and was blathering on about my woes and she had really helpful, loving, practical advice. So practical, in fact, that I told her to hold on while I got a pen. Actually started taking notes. She was so on point and knowledgeable. It was the equivalent of someone taking you by the shoulders, looking you in the eye, and saying “LISTEN, simmer down you’re hysterical. Now, do x, y and z.”

Ah.

She’s a smart girl, that Dr. Meg. Glad I don’t have to make an appointment and wait 3 weeks to see her. 

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Truth

Truth

(Bree took this picture at a parking structure downtown that had a zillion levels. This was towards the top. It makes me laugh.)

Sometimes I feel so overwhelmed with all of the health bullshit that I feel as if I’m drowning. Like it’s all too much.

That happens a lot actually. And then I’ll calm myself down or Peter will help me. And I’ll just keep swimming.

It’s a whole hell of a lot, though.

I don’t want pity or to be felt sorry for or attention. I just want it documented. For myself. For someone else who needs validation or encouragement.

I sit on the couch this morning, with the dog in my lap, snuggling in a blanket next to a huge window with the blinds pulled up so I can soak up as much natural light as I can. It is snowing wildly and all is quiet. Well, not totally quiet. Hadley is learning a Mumford and Sons song on the ukulele up in her room and I can hear her sweetly singing along.

I am nursing a tear duct infection in my right eye. It weeps constantly, and the area around it is sore and tender. I have to explain to people that I’m not crying as I constantly dab my eye. At first I thought it was just allergies, so I ignored it. It got really bad, though. I am on antibiotics (oral) and eye drops (every 2 hours). It is a huge pain in the ass and it isn’t showing any signs of going away. It’s been 3 days.

I was supposed to have an ultrasound on Wednesday for abdominal pain but had to cancel it because I was at urgent care for the freaking eye!

In addition, my back pain is so frustrating and debilitating that I have a love/hair affair with pain meds. Love because they help with the distracting, needling pain. Hate because they are terrible for you and they cause depression, which I already have because of my fucking chronic illness.

Are you sick of me yet?

I am.

Depression and I go way back. I’m taking anti-depressants. Probably always will. But opiates (percocet or vicodin) break through the anti-depressants and cause irritability, sadness and dark thoughts. Total pain in the ass. Not scary dark thoughts just not helpful thoughts that make me feel worthless and not enough.

I know I’m enough, dammit.

Damn jedi mind tricks.

So I do the dance in my head.

I am in pain. Do I take something or can I just deal? Hm. And for those curious, Tylenol and Ibuprofen do nothing for the pain so I don’t even bother.

A lot of the pain comes from lupus too.  Oh yeah, remember that bitch?

And I’ve been having MORE pain lately because I started a drug called Benlysta about 2 weeks ago. This drug works by calming down the hyperactive immune system of lupus by stopping a protein called “B lymphocyte stimulator”, which is believed to increase inflammatory reactions  that attack and damage my body’s own healthy tissues.

Basically, Benlysta is suppressing my immune system. Specifically, those jerkface B cells. This is the second drug I am taking that  suppresses my immune system. (The eye infection is suddenly making more sense, right?) I am that much more susceptible to infection. (fun!)

Benlysta is an infusion, which means I have to go to the office, get an IV and sit there for an hour. In the beginning phase, which I am currently in, I go once every 2 weeks for 3 times, and then it’s just every 4 weeks. Forever. (if it works) A separate blog post in order to regale you with infusion room tales. Oy.

The issue is that the drug causes a huge ruckus in my body. My first infusion was March 12 and it knocked me the hell out. HUGE flare. I still don’t feel right. My next infusion is Tuesday, March 26, which is perfectly scheduled during the kid’s spring break. Awesome. I’m worthless for about 5 days following the infusion.

Ugh.

I am telling myself to give this drug time to work. At least 6 months.

As I said, I’m not looking for sympathy or playing poor me. I’m just  documenting. Because I tend to not to focus on the negative. It’s not productive. I focus on the goodness in my life because that makes all of the shit seem more bearable. And there is so much goodness.

But I want it documented so I can look back and think “I did this." Or H&F can look back and read this and know that I was trying. As hard as I could most days.

It’s helpful even just writing it all out. Cathartic and validating. I spend so much time pretending I’m fine and blowing it off that I forget to say to myself “Emily, you are a total bad ass. You’re doing great, kid. Chin up. Don’t let the motherfuckers get you down.”

Just reading that made me smile.

Thanks, self.

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Distracted

Distracted

Remember this scene from GIRLS this season? Episode 4, I think. Hannah and Jessa were in the tub together and Jessa was crying after her breakup with Thomas John.

It was a beautiful scene. But here was my issue.

That tub is filthy.

Like Did-someone-break-into-your-house-and-paint-excrement-on-the-grout? filthy.

In fact, while watching this scene, I was so distracted by the filth of the tub that I started thinking about how I would clean it. (Which makes me a TOTAL ma’am, I’m aware. I’m officially old.)

Here’s the tape that played in my head:

“Bleach would be involved for sure. And I would totally use one of those CLOROX bleach pen things I’m in love with that you use to bleach grout. It’s wildly satisfying. And so precise! I love the feeling of accomplishment you feel after. I cannot believe they are sitting in that tub? Would I have sat in a tub that dirty in my 20s? I’m sure I did. Wow, that’s really gross.”

Credits role.

DAMN! I missed the whole scene.

Rewind.

Do not be distracted. Do not be distracted.

Distracted again! That nasty tile sucks me in every time.

I had to watch the scene 3 times. And I loved it.

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In Praise of My Bed

In Praise of My Bed

                                (pic source unknown)

 

In Praise of My Bed

by Meredith Holmes

 

At last I can be with you

The grinding hours

since I left your side!

The labor of being fully human,

working my opposable thumb,

talking, and walking upright.

Now I have unclasped

unzipped, stepped out of.

Husked, soft, a be-er only,

I do nothing, but point

my bare feet into your

clean smoothness

feel your quiet strength

the whole length of my body.

I close my eyes, hear myself

moan, so grateful to be held this way.

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WWPD

WWPD

I admit, when I read “Just Kids” it was strangely life altering. I fell in love with Patti Smith. She’s a bad ass. No doubt. Strong and brave and fearless and smart and ferociously talented. I want to be her when I grow up.

When I see pictures of her, I take a deep breath and slowly exhale while studying every detail.

This site, fantastically named “Awesome People Hanging Out Together” has been mentioned everywhere lately. Have you seen it? It’s sublime.

This picture stopped me in my tracks, of course. Patti and William S.Burroughs? Yes, please. Look how he’s holding her arm. Good stuff.

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Altering

Altering

A few weeks ago, I had the entire interior painted Benjamin Moore’s Balboa Mist and I swear my blood pressure has lowered. It’s glorious. Restful and calm and beautiful. Light enough to look white but not as stark. I also had them paint the bannister black, which looks crisp and sharp. (Plain oak is the enemy!)

When the painters were here I was STILL frantically getting down wallpaper in the kitchen so they could paint. (I’m one of those people who literally needs a fire under my ass to get things done.) The result is nothing short of miraculous. Well, maybe not miraculous, because shit’s not totally done (kitchen) and the fruit tile still taunts me but a HELL of a lot better. I was terribly proud of myself for not half assing the area behind the refrigerator and just letting them paint over the paper, because “no one sees it.” I joked that now we can pull out the refrigerator and have drinks back there because it looks so good!

Peter and I even pulled down 3 cabinets and replaced them with LACK shelving from IKEA for open shelves!

This whole process of rethinking and refining our space has been incredibly liberating and creatively fulfilling.

Karrie was here a few weeks ago and I’m still mourning her departure. She’s one of those people you love being around because, in addition to being funny, smart, super creative and loving, she makes you feel like a better version of yourself. I love to hear her opinion and her take on things. It’s always colorful (literally and figuratively), thoughtful and interesting.

How killer are those chairs? We picked up two of them with the gray seat and paired them with the IKEA Docksta table in the kitchen.They are art, I tell you. Sometimes I just pull one out and run my fingers along the smooth wood and stare at the intricate webbing of the seat while whispering sweet nothings. Love does not even do a good enough job of describing how I feel about these chairs.

I’ll post pictures tomorrow. I’m currently laying on a heating pad in bed. I’m flaring like a mofo and NOT happy about it. It’s been going on for weeks. Plus, my children are on Fall Break. Crappy combo.

Karrie has a few posts about her visit and some fabric choices on her blog, Happy Habitat.

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My Tweenager

My Tweenager

Rare Bird is in full tilt tweendom. She’s all about being in her room, listening to music, playing with her hamster, texting, watching teen shows or practicing bass and guitar. It’s cute. I have to squelch my urge to push her outside and say “go play!” like I try to do with Finn because, as she has told me, she’s older now and doesn’t “play.”

I so enjoy being with her. She’s smart, observant, creative, sweet and incredibly empathic. Her head is in the clouds most of the time, which can be frustrating as the mama, but tis often the case with smart creative types, so I try to have a sense of humor about it. (“try” being the operative word)

At 10, she already knows about everything you could possible think of so there is no need to have any “talk” or embarrassing afterschool special moment. We told her about sex at 5 so it’s just been an ongoing conversation. We’ve covered everything in a very matter of fact way.

One day, a few months ago, she said “I think I want a bra.” “Yeah, we should probably get one.” I said while pulling up GapBody online and checking out the cute pullover versions.

She wore it for a week and declared “Bras are uncomfortable!” I said “Yes, they are! Why do you think I take mine off the second we get in the house?”

Same thing happened with shaving. She said she wanted to shave. I showed her how and bought her some razors and shave gel. I told her it was a pain to keep up, but she wanted to do it. A week later she said “Shaving is a pain!”

Yup.

I guess my point is, I wanted her foray into teenagerhood (is that a word?) to be smooth and organic, not awkward and fraught with shame and weird conversations. So far, so good.

Since she was little, I have tried to educate H (and Finny too!) about the importance of taking care of your body, including your skin, teeth and hair. (Finn wants a Clarisonic for Christmas. A fact that delights me. He won’t get one. Too spendy.)

I tell them “Your teeth are the jewelry of your face. You have to take care of them!” (Other rampant Emilyisms: Mommies are Magical and Weird is Wonderful – someone please make me a t-shirt in a script font of that last one!)

I’m not trying to turn Hadley into a product whore but I do think it’s important to be aware of quality beauty products and brands. That said, have you seen The Willa line? This suuuuuper darling tween named Willa, and her mother, developed a skincare line for girls.

I bought the basics for HJ and am trying to get her into the habit of washing her face every night and applying moisturizer. Willa’s tag line is “Start Young. Stay Young.”  I subscribe to her Facebook feed and she’s so freaking darling, fresh and young, it makes me feel like the Cryptkeeper.  (That show was so good!)

She has also been loving her Tangle Teezer.  I know it seems gimmicky and I was dubious but the thing works and Hadley loves to brush her hair with it.

I do have moments where I think “where has the time gone?” when I see my strawberry blond girl sprouting up and morphing into a little lady, but for the most part, I’m really loving this age. She’s so interesting and interested, two traits that I adore. Traits that my Dad possessed as well, which I love.

Hadley, please know that I am proud of you every moment of every day. It is a privilege to not only be your mama, but also to be in your orbit and soak up all of your sparkly magic. xoxo Mom  

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