Oh So Quiet

Oh So Quiet

I quit Facebook and it was awesome.

I have been debating it for YEARS. Years, I tell you.

There were so many things I hated about it but I just kept checking it every 10 minutes like a trained chimp. (For the record, there were some great things too. Just not as many as the annoying ones.)

It was a lot of noise and distraction and frankly, stuff that I didn’t care about or need to know. There was also the element of “LOOK HOW MUCH MORE FUN WE ARE HAVING THAN YOU!” Something that has proven leads to depression in some folks. And that is definitely something I do not need help with, thankyouverymuch.

After deactivating my account, I felt immense relief. Like, crazy amounts of relief.

Then panic set in. What if no one misses me? What if no one knows I’m gone? Where will I put all of the pithy comments I come up with and all of the cute pictures? How will I know what’s going on?

A classic case of FOMO.

Fear Of Missing Out.

And the nurturing voice in my head said “It’s OK.”

And it is.

Hope your summer has been swell. I got semi tan for about a week and have eaten massive amounts of berries.

xoxo

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Self Love

Self Love

                        +++

 

I sort of cringe even reading the words “self love”. I feel like it’s every where. (a sign perhaps?) It just sounds so cheesy and often I think to myself, I don’t need to read about that. I practice self love.

And I do love myself. I really do! I love being me.

But lately, (is it turning 40?) a rude renter is taking up space in my brain preventing me from being good to myself. I’m not used to this voice and frankly, have been too tired to fight her. I purposely choose a female pronoun. This bitch is a Heather. She tells me I’m weak and lazy because I’m sick, that I’m not smart, attractive, talented, strong or worthy.

I’m cringing even reading that.

It’s not me.

I’m all those things. And a hell of a lot more.

But when the tape in your head plays negative nelly on a never ending loop, you just start to nod and say yeah, you’re right. I’ve been brainwashed.

I knew shit had to change when I would say something and Peter would look at me like we’d never met before.

“This isn’t you” he finally said.

It’s not.

Onward and upward, MFs.

xo

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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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Showing Up

Showing Up

Hello snowflakes.

I’m so much better.

Oh so much better.

I’m me again. Maybe better. Brighter? Definitely.

It was like a reboot of sorts. Incredibly painful and sucky but I got through it, dammit.

I am badass. Hear me roar.

I feel beyond lucky to have such supportive friends and family. Where would I be without you?

Coinciding with my climb out of the hole of depression is my extreme inspiration from, seemingly everything:

• The endless sky.
• Music – specifically Lenka and Robyn, which have been pulsing from anything that would play music so loud that I could feel it in my skin, letting it seep into my pores and brighten my soul. It works. I swear.
• Art – nothing specific, in fact, most of it is nameless. Graffiti here and there, a well styled print ad, the guy at the bagel shop’s tattoos.
• Books! (exclamation mark intended and necessary) I read Visit from the Goon Squad and Just Kids in the span of 2 weeks and was blown away. I highly recommend both. The story in Goon Squad was creatively woven, I was in a constant state of awe of Jennifer Egan’s talent. Just Kids will stay with me for a good long while. It was intoxicating and ignited somewhat of a creative explosion in my brain. I see things differently after having read it, if that makes sense.  I’m itching to press the book I love so much into the hands of my sister, whom I love so much, knowing she’ll adore it too.
• PGP, HJ and Finny P. Everything I am, I owe to them. They encourage me to “just show up.”

Here’s to more happy days!

xo

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