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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Taking refuge in the guest room

Taking refuge in the guest room

 

Feeling awful around these parts. Like, crying awful. It’s the fibromyalgia flaring, perhaps mad after surgery. (Oh yeah, recently diagnosed with Fibromyalgia. And the surgery was for a hernia. Jealous? Woo fucking hoo.)

Here’s a good place to start if you don’t know much about Fibromyalgia.

My skin radiates pain. I ache as if I walked up 54 flights of stairs while carrying a dresser on my back, looking up the entire time. It’s akin to the ache of a really hard work out on top of having the flu. I try so hard to explain it…I hope that helps. It’s different than lupus, but shares a lot of the same symptoms.

Tears streamed down my face this morning as I put Hadley’s lunch in her backpack and said “HAVE A GREAT DAY!” in my best fun voice, with my back turned to her. Finn thought the tears were because of him, because he was being a little shit this morning, so he apologized again, genuinely. (side note: He lost his screen privileges for the day – WHY does that happen on days when I REALLY need him to be occupied by a screen?)

I exhaled deeply after they left, ate cereal and took all of my meds like a good little patient.

The housekeepers were on their way over so I took pain meds, grabbed my sweetest Ollie dog, and shuffled into the guest room so they could clean the rest of the house and here I remain. Housekeepers are the biggest luxury I have in my life and I am grateful every single time they come. It is a medicine of sorts. It calms me to have a clean house plus I don’t have the energy to do it. If you know someone with a chronic illness or someone who is sick or has had surgery, a baby, what have you, send someone to clean their house. It’s the ultimate.

In happier news, it’s almost summer y’all. I am not as anxious as I have been years past. Maybe that is because it’s still 2 weeks away but perhaps it’s because I feel prepared. Finn’s doing a parkour camp, lacrosse, skateboarding, and rock band camp. Hadley is doing rock band camp as well, but has deemed all other camps “stupid.” Hm. I think I’m more relaxed because they are older, so I don’t have to be as involved. Finn will be 9 in July and HJ is 11. Good independent ages. (Although, talk to me 2 weeks into summer when I start drinking at 3 because they’re making me crazy.)

I took the kids to Old Navy a few days ago to get a few summer necessities and I told them that they may each pick out two things. I knew Hadley would have no problem (two maxi dresses) but I was interested to see what Finny would pick out since he doesn’t usually shop with me. Both Peter and Finn don’t care what they wear as long as its comfy so I usually just buy stuff for them.

He chose a straw fedora (? – so cute) and a pair of slip on addidas like flip flops. He wanted them, but he was torn because all of the other kids wear between the toe flip flops and he didn’t want to be different. I leaned down and said “Who Cares? Uncle Vince doesn’t wear between the toe flip flops either because he doesn’t like them and he’s the coolest.”

Finn’s face relaxed and he smiled. That was all it took.  “Oh! Ok, good. Then I’ll get these.”

While they were perusing, I collapsed on a bench near the dressing rooms. I somehow got involved in a debate between a woman and her girlfriend about which bikini looked better on the girlfriend. It was one of those moments that I love where you develop a familiarity with strangers really quickly that makes them feel like dear friends and that we’re all in this life together, which we are.

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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Here’s The Thing

Here’s The Thing

Love Alec Baldwin and his podcast cleverly called “Here’s the Thing”.  I find myself saying ‘Here’s the Thing’ a lot lately.

So, here’s the thing.

I bought a pedometer because I wanted to track how much exercise I was getting just by being me.

Everyone has heard that you’re supposed to get at least 10,000 steps a day, right? So, what do I do the first few days I have the thing?

I go balls to the wall and get 12 thousands steps. Just a total maniac. Constantly checking to see if its working and checking the total number of steps. I figured out that normally I’m probably a 5-7 thousand steps a day kind of gal. I’m aware it’s borderline sedentary. I’m not an active person really. Lots of resting up in here. You know, chronic illness and all.

So, after getting the pedometer, I decide I’m going to turn into Jillian Michaels and bust my ass. Cut to the third day after “Pedometergate” and my system (riddled with lupus mind you) responds with “Are you shitting me?” and immediately shuts down all operations.

FLARE.

Full on. I was pissed.

And then pissed at myself.

And then thought the whole thing was funny.

After I was pissed for a few days of course.

So, now because I’m terrified I’ll throw myself into a flare again, it’s 3:30 and I’m at 1600 steps.

Apparently, I’m all about extremes. 

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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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Shell

Shell

I wish I could explain it to people. I try. But you don’t know unless you’ve experienced it. Being pushed off a cliff into the depths of despair.

It can happen regardless of your life situation.

I am happier than I ever have been in my entire life. I have a wonderful life and yet I am depressed.

Really depressed. Not “I’m so depressed my favorite show was cancelled.”

No.

Lying-on-the-floor-staring-at-the-ceiling-while–you-sob-uncontrollably-depressed.

It’s very common with chronic illness. It bound to wear you down being in pain all of the time. I have been on an anti-depressant since shortly after being diagnosed with lupus. And with my recent back surgery, the pain has been endless and seemingly insurmountable.

I know some people think depression is a weakness, that life is sad. That you should be able to buck up and pull yourself out of it.

There is no pulling yourself out of this.

It’s horribly dark and so hopeless and scary.

I just felt empty. Hollow.

I’ve known for a while that my antidepressant wasn’t fully doing its job.

For YEARS my psychiatrist has been trying to get me off of my current antidepressant because he didn’t think it was right for me. I kept saying no. Why rock the boat? I deal with so much medical bullshit and so many other medications that the thought of transitioning to a new medication did not appeal.

Looks like my body made the decision for me. Three days before Christmas.

Ho fucking ho.

As I said, it felt like I had been pushed off a cliff.

And then suddenly, I was drowning.

I was paralyzed. Couldn’t get out of bed. Didn’t want to eat. Couldn’t help with the kids at all. My whole body hurt. I couldn’t think straight.

Luckily, I am married to the ultimate human being and have a superhero bestie who came bearing vegan ice cream sandies and laid in bed with me while I cried. She may as well have been wearing a cape.

I finally got my doctor on the phone, explained the situation and med changes were quickly made.

And now I wait. And experience all of the quirky and horrible side effects that come with transitioning off of one medication and onto another.

***The above was written December 22***

Today is January 6 and just YESTERDAY did I start to feel like me again. I showered and actually left the house. I smiled genuinely for the first time in WEEKS and it felt SO GOOD. I can not even explain the feeling. I was jubilant. I felt free.

I debated whether or not to even post this. While talking to Meg though, she helped me realize it’s not something I’m ashamed of and if anything, posting this will educate someone or help someone else feel like they are less alone.

PS – If you do happen to know someone who is struggling with depression, do not, under any circumstances say anything like this to them “But you’re pretty and skinny. What do you have to be depressed about?” Because you might get punched in the teeth.

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Keeping It Low Key…Still

Keeping It Low Key…Still

Ok, so I had my 2 week follow up appointment with my surgeon today and he assured me everything I am going through is normal. This was validating and I’m sure you can imagine what I had been imagining. Or maybe you can’t. It was dramatic, people.

Upon entering the exam room he said “So, how are we doing?”

Eloquent 38 year old that I am, I said “You didn’t tell me it would suck this bad.”

He laughed uncomfortably.

I’m in a better place mentally though, in less pain..sort of, and have updated my expectation management software to the current (and more realistic) version.

Can I just take a moment to recognize Peter Provost? The guy is a champ. Truly. And I would have been committed to the loony bin had it not been for him these last few weeks. The guy’s phenomenal under pressure. I will miss him being my driver, personal assistant and all around sherpa.

So, I stumbled up on the following advice last year and like a good little nerd, I copied it and put it in my calendar on 12/5/11 with the header “EMILY: READ THIS”. (I love when I do stuff like that) Imagine my delight when I opened it and read what fits PERFECTLY into my desire to “keep it low key”

Enjoy.

(via Blooma Blog – I’m sorry I don’t have the link and now I can’t find it!)

Be in charge of your holiday season. Don't let other people or advertising medium impose their expectations on you. Keep in touch with your deepest feelings.

• Keep it simple. You arrange the pace and space. (So important for keeping your kids sane, too!)
• If the loss of a loved one, financial troubles, or any serious anxiety surround you this holiday, make the season as simple and as positive as possible for yourself.

Holiday Bill of Rights:
• You have the right to take care of yourself: eat right, exercise, and get enough rest.
• You have the right to mixed emotions: happy, sad, frustrated, guilty, afraid, and thankful.
• You have the right to solitude—for planning, thinking, reflection, introspection, prayer, and relaxation.
• You have the right not to accept party or dinner invitations.

So good, right?

Our darling tree is up. A lovely wreath is on the front door. We play Christmas music every day and talk about the excitement of Christmas. I have a few activities planned (Botanic Gardens lights & Denver Gay Men’s Chorus Christmas Show) but other than that, we’re keeping it…say it with me…LOW KEY. And I couldn’t be more delighted.

Sending you some zen and coziness on this lovely Tuesday.

XO

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Enter: Reality

Enter: Reality

Ok, so it turns out I’m a bit of an unrealistic psycho. (shocker, I know.)

It has been one week and 2 days since surgery. I have been diligently conferring with my Dr., whom you may know, Dr. Google, and he agreed that I am an unrealistic psycho and that I need PATIENCE and TIME. This pain is normal. SUCKY but normal and I must be tender and careful with myself.

I knew this.

But Dr. Google has a way of solidifying things, you know? (Word to the wise though, Dr. Google has some patients who are not the kooky, fun kind of psycho (me), who tried to tell me that they had disc surgery too and I was going to end up alone, in a wheelchair, never to walk again, like them. And that we should start a book club.

NEXT!

Ok. Patience. Got it. Will work on that.

In the meantime, I have a confession. I cannot understand or fathom, and am actually quite embarrassed to tell you this.

I watched not one, but TWO seasons, all in a row, of Dallas Cowboy Cheerleaders: Making the Team last night. I stayed up until 1am.

Friends, What. The. Fug? My intention was to watch Melancholia but at the last minute I deemed it, well, melancholic and searched for something mindless.

BINGO!

I’m telling you. I can’t look away. Trying to armchair psychoanalyze myself, the only thing I could come up with was that I grew up in Houston, Texas. When I was little I wanted to be a Dallas Cowboy Cheerleader (the pinnacle of success and beauty – eek gad) or a waitress. BIG DREAMS!! Whatevs. I was like, 6.

Happy happy Friday. Don’t let the holiday crazies grab hold of you. Remember….keep it low key.

gentle movements, peace and pain pills,

Emily

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Low Key

Low Key

Hi kids.

Sigh.

It’s been a while.

I had surgery last week on a herniated disc that has been plaguing me for YEARS. It had just progressively gotten worse and the solutions (injections, PT were doing NADA) so I said “fuck it. do surgery” and proceeded to schedule it for the day before Thanksgiving.

It’s called a minimally invasive lumbar discectomy. Basically, they put me under, make a small incision, cut out the herniated disc part, move the nerve that is unhappy to a happier place and stitch me back up. It was supposed to be outpatient but they couldn’t get my pain under control (awesome!) to send me home so I was admitted for the night.

I am currently in the recovery part, which I hadn’t anticipated would suck balls. There isn’t relief, yet. It’s supposed to come eventually, but of course, Debbie Downer infiltrates my brain and convinces me that there will be no difference. The doc says it will take 6-8 weeks to notice the full difference. It’s been 1 week.

For two weeks there is to be: no bending, lifting or twisting. No lifting anything over 10 lbs. No driving. I can walk all I want, which I have been doing, when I haven’t been sleeping because I’m more tired than I’ve ever been. Add in pain pills and it ain’t pretty.

Yesterday I had a total pity party. Poor Peter. He works from home, so from time to time, I would just show up in his office, shoulders slumped with frowny, borderline cry face on.

Patience, he would say. You’re doing great.

It’s hard to be patient when Christmas buzz whirrs around me and everyone is rushing and talking about how much they have to do! So much to do!

And there’s me.

The turtle.

I know it’s all doable.

And it’s not a race.

My mantra for this month is to keep it low key. Imagine my delight when I received an email from MCA Denver yesterday with this picture attached.

Seriously?

FAB-U-LOUS. (I heart the beautiful naked guy in the grocery cart)

I love it and want it to be our Christmas card. I’m not sending those, by the way. Christmas cards. It’s not low key. Wouldn’t want to mess with the theme.

I just finished Mindy Kaling’s Is Everyone Hanging Out Without Me? (And Other Concerns) thereby cementing the fact that she and I need to be friends. It’s a quick and super hilarious read.

Today, I will be good to myself. And no pity parties. And maybe I’ll shower. Maybe.

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Still

Still

Santa Fe with my Mom and sister to celebrate my mom’s 70th birthday was so lovely. We ate really amazing food, chatted, meandered and were just together, which my mom said was the best gift.

I agree. It is so rare to be able to spend that much time together with no agenda. Snapping pics just didn’t seem to be a priority but we did get one good one.

Seeing the Georgia O’Keefe museum was a highlight. Wasn’t she an inspirational bad ass? I’m not a huge fan of her work but man, I love her spirit. I bought a little card that has a picture of her on the back of a motorcycle. The look on her face and something in her eyes spoke to me. Yet another reminder to drink up this rich life and live the way you want to live.

 

Feeling run down post trip, which was expected.

“Move slowly” I tell myself. “Take your time. Not everything will get done.”

I want to hibernate, be still, and not talk. That’s a difficult task in this busy life.

And yet, I try.

Love this piece by Conrad Roset found via ffffound. Isn’t it beautiful?

Happy Thursday, lovers.

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Living a Little

Living a Little

Bonjour Peanuts,

In my constant quest to seek out the extraordinary and do things that challenge me, it occurred to me that I haven’t been doing much seeking or anything challenging lately. So, I decided to change that.

I struggle with exercising my creativity (I guess this blog is one way to express myself creatively, but you get my meaning) so I took a baby step and got this book by the awesome Keri Smith.

 

I’m actually having a harder time with it than I thought. My “perfectionistic tendencies” are surfacing for sure. The first page says to stand on the page and mark it up. With your shoes on. That could possibly be dirty!

I did it. And it felt oddly liberating. I daintily stepped on the page and left a little dust mark. (note to self: do over)

Hadley read through the copy when I first got it (I told her not to tell me any of the pages) and was absolutely delighted by it. She was laughing and saying she wants a copy too! It comes so naturally to kids, to dive right in, to delight, destroy and create. I need more of that in my life.

The second page (I’m going in order, like a nerd) says to splash coffee or tea on the page. Again, I hesitated, and then I just did it. And it felt good! I look forward to creatively destroying this book. Wish me luck. (I’m going to channel my most favorite artistic old same, ELK, during this project. She’ll be my muse.)

 

I also signed up to become certified to teach yoga to kids. It’s called Mindful Life Yoga for Kids. It looks really really interesting.

From the website: “The method is theoretically derived and informed by the latest research in the fields of cognitive neuroscience, positive psychology, social and emotional learning, and mindfulness.”

Mindful Life Yoga for Kids is a unique and innovative program specifically designed to help children develop:

• An understanding of how their brain works
• Attention skills
• Sensory awareness
• Emotional management skills
• Compassion & Empathy
• Ecological awareness

I honestly don’t know if I’ll even use the certification beyond my own house. I do know that the techniques are tools I would like to have in my arsenal for Hadley and Finn. 

The training is this weekend. All weekend. Friday from 5-7pm and then Sat and Sun from 9-4. I’m excited and nervous. Excited because I’ll be learning… YEAH! Nervous because lupus is probably going to be Debbie Downer as this is a lot for my body to take and I’m already feel kind of shitty. We’ll see how it goes.

And the other thing I’m doing to get out of my comfort zone is taking English riding lessons with Hadley! I’m so looking forward to it. She’s been begging for years to do it. I thought she would get over it. Who was I kidding though, this is Hadley we’re talking about. So, while signing her up, I thought “I’d like to do that too.” So, I am. We were supposed to have our first lesson on Sunday but Hadley was sick. I’ll have to get PGP to take some pics of me and my girl. I’m thrilled to be around horses. I loooooove them. And let’s be honest, the riding outfit is really cute too.

It’s an overcast day and I’m feeling fluish and achy, courtesy of Hadley and her cold. My bed beckons me.

Happy Wednesday to you. Get out of your comfort zone. It feels good. Weird. But good.

XO

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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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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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Inspiring

Inspiring

 

How bad ass is this? Love love love it.

 

 

You have one body. Be good to it.

And Happy Weekend, MFs. Do something that makes you happy.

XO

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3+8

3+8

My birthday was glorious. Lots of love. SO much of it. I continue to be surrounded by love and light, which feels pretty good. How did I get so lucky?

I felt as if I had been celebrating my birthday for a while after having such a wonderful Asheville trip and then various loveliness sprinkled about (brunches and lunches with fab friends) before the actual DAY of my birthday. So when it arrived I wasn’t prepared.

The most fantastic PGP made THE most beautiful and delicious dinner for my birthday: Broiled Blackened Tofu, Butternut coconut brown rice, and jerk asparagus. (all recipes from Isa Chandra Moskowitz’s brilliant cookbook “Appetite for Reduction”)

Then…THEN, he also made a vegan birthday cake, that I swear tasted better than most regular cake I’ve had.

E was with us that evening for dinner, which made the dinner extra celebratory.

I kept squealing with delight throughout the meal, that all of this fabulousness was made for me. Throughout this whole “eating for health” journey of mine, Peter has been nothing but supportive and sweet, when he could easily roll his eyes and turn up his nose. I admire that and appreciate it more than he could ever know.

I maintain that my dear husband is my most favorite gift of all time.

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Recovery

Recovery

I’m still in recovery mode from our most recent trip to Asheville, NC. The trip home was brutal. Peter misread the tickets so we missed our flight. I could not be annoyed with him. He was annoyed enough for the both of us. We rallied and tried to make the best of the 5 hours we had in the Charlotte airport after driving 2 hours to get there.

Luckily,(insert exciting music here!) We bought an iPad the day before and pulled that sucker out to surprise the kids as soon as we got to the airport. Needless to say, the kids were beyond happy and we were saved, quite frankly.

I ache from the tip of my head to the end of my toes. My body is angry and my fatigue is endless. I am working on it though. And by “working on it”, I mean doing a whole lot of nothing. (aside from making out with my VitaMix and giving my doggies love)

With the kids happy and occupied on the flight, I watched Sophia Coppola’s Somewhere, which I’d been dying to see. It was mesmerizing. I love how Coppola describes it as more of a mood, than a film. More like a haiku. It’s beautifully minimalistic. Just a brief glimpse into the life of the main character, a famous actor, played surprisingly well by Stephen Dorff. Elle Fanning is lovely. That girl lights up the screen.

I feel the need to wrap myself in a cocoon and come out in a few weeks. A vacation to recover from my vacation.

If only life were that easy.

Nope.

Thrown back into the thick of it.

In the meantime, I am smiling remembering sights and sounds from Asheville, good times had with family and craving food from Chai Pani and The Laughing Seed.

I had Peter pull over one day so I could snap some pics of this amazing mural. I only noticed later the creepy hanging chickens in the blue background. Blech. Ignore that part.

While snapping a few shots, a Jack Russell terrier came bounding towards me, barking. He immediately stopped as I bent down to pet him and give him some love. His scruffy bearded owner appeared from a doorway and yelled “BRUCE! Quit it!” I laughed all day at the thought of a dog named Bruce. Love it.

Pretty brilliant, right?

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Lavender Lady

Lavender Lady

I love the smell of lavender. I used to hate it and thought it smelled like old ladies. (I would turn my nose up at the lavender scented products when I was stocking up on Spring Rain lotion and soap at Crabtree and Evelyn in high school. I love how scents can remind you of specific times.)

I digress…

But now I seek it out and inhale deeply every time I come into contact with it.

Sometimes, I’ll dab a little oil under each nostril to smell for hours.

I buy most all of my lavender products locally from Moondance Botanicals, a magical little shop in Denver you should check out if you’re in the area.

I always put lavender oil in the bath when I’m soaking. Sometimes if I’m just soaking my feet, I’ll put in a few drops. I highly recommend soaking your feet. An acupuncturist recommended it and I find it so relaxing, right before bed.

I have a bottle of lavender oil and water that I spritz in all of our rooms as the kids are getting on pajamas and readying for bed. I like to think it helps relax them too, or at least signal that it’s wind down time.

I love it in candles. St. Germain-en-Laye Lavender is one of my fave lavender scented candles. Peter, however, hates it and thinks it smells like “another guy is in the house” (he thinks it smells too much like a guy’s cologne) so I don’t buy it much anymore.

You can’t go wrong with an old classic like Dr. Bronner’s lavender soap.

And finally, on this little lavender tour, I save the best for last. Dagoba Lavender blueberry chocolate bar. Haven’t had this in a while because it’s not vegan but the combination of lavender, blueberry and chocolate is beyond delightful.

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Funk Removal

Funk Removal

Have been in a funk for a few days. Today I decided to do something about it.

These things in combination seemed to have done the trick.

• Find a good vegan soup recipe for dinner so I don’t have to eat the same motherscratching brown rice and veggies.
• Noon yoga class with a righteous instructor
• stroll through Vitamin Cottage grabbing some groceries, including the prettiest strawberries I have seen in a long time, roasted pumpkin seeds and frozen wheatgrass shots.
• Drive home with the windows and sunroof open, taking in the amazing Colorado day.
• Listen to CD made YEARS ago by KBDK, which contains a good amount of classic rock and hippie jams. (Widespread, Phish, Grateful Dead…)
• Windows still open. Volume up embarrassingly loud.
• Pull into the driveway with a smile on my face and then proceed to take 2 shots of wheatgrass and eat strawberries over the sink.

Mission accomplished. Funk removed.

It’s day 16 of the cleanse, people. Uh huh. I’m feeling pretty badass. Not supremely badass as there have been bumps in the road. Like this morning when I emailed B and was like “TALK ME DOWN FROM THE LEDGE. SCREW THIS!”

But still, maybe a little bad ass.

Good job, body. You’re doing swell.

On a TV front, are you watching Portlandia, yet? Mkay. Get on that. Although, don’t repeat lines to Peter and laugh hysterically because he’ll just look at you blankly. Also, I know I’m totally late for the party but FRINGE? Hello, fantastic. I’m deep into Season 1. I’m also going to acquire Friday Night Lights. After all of the hullaballoo everyone makes about it, the shit better change my life. Kidding. Sort of.

Wishing you wonderful Tuesday.

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