These days...

These days...

Hello peanuts. 
Happy New Year! 
I hope you are settling in nicely to 2015. 
I don't make resolutions. I'm not a planner or long term goal setter. I don't know if its my personality or that I'm usually just trying to make it through the day. Perhaps both. I do love to read other people's though!

I saw this list on DesignCrush and unapologetically stole it. 

Making : lots and lots of piles
Cooking : rarely
Drinking : water - warm with lemon or ice cold.
Reading : Essay collections! The Unspeakable by Meghan Daum, Bad Feminist by Roxane Gay and One More Thing by BJ Novak
Wanting : to feel better
Obsessing: over puzzles, still. 
Looking : for the silver lining in chronic illness 
Playing : music to lift from the sickie sadness and winter doldrums
Wishing : that I was a young hooligan so I could make it to the 10:30 show of BROAD CITY LIVE at the Bluebird.
Enjoying : my family
Waiting : for The District's new album to come out
Liking : that Finn plays online games with Becca's (Old Same!) son. They hoot and holler on their headsets and it warms my heart.
Wondering : if I should straighten my hair
Loving : the age of my children currently (10 & 12)
Pondering : what H & F will be when they grow up
Considering : double and triple piercing my ears with my 12 year old
Watching : Miss Fisher's Murder Mysteries on Netflix
Hoping : that I'm raising good people
Marveling : at HJ's bright pink hair. (This is us Xmas morning.)

Needing : to go grocery shopping
Smelling : like peppermint
Wearing : various versions of the "fancy sweatpant" that's all the rage, not styling it though, just a tank and no bra. #classy
Following : all orders given to me by my doc, like a good little patient. 
Wanting : to be at a beach
Noticing : that I'm getting stronger physically (go Pilates!)
Knowing : other people's opinions don't matter
Thinking : about how much I adore my mama
Feeling : fortunate
Admiring : people who make their creativity a priority
Sorting : various stupid paperwork on my desk
Buying : books!
Getting : into Pilates 
Bookmarking : vegan recipes, true crime articles
Disliking : eggshells in the sink 
Feeling : fuzzy headed

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lazy

lazy

Yesterday, we took my mom with us out to lunch and to see a Christmas musical called “Home for the Holidays”. It was really great to be out with her. As I struggle to find the Christmas spirit, she’s one of those people who just sort of carries it with her all of the time. I was hoping a little of her cheeriness would rub off on me.

When we got home, I went upstairs to lie down with a heating pad. The day took an enormous amount of energy and I was paying for it.

Often times, I have my laptop to read or watch something to distract me from the pain and fatigue. My body is exhausted but I can’t sleep.

Finn came in and wanted something, a video game on his iPod or something. I said no.

He became furious and said “Sometimes I don’t think you’re tired. I think you’re just lazy.”

I was stunned.

He left the room and I started to cry.

My one fear.

The main one, actually. The fear I carry around with me all day everyday, that people think I am faking or lazy, just came out of the mouth of my child.

I collected myself and called him back in the room.

I told him he hurt my feelings. He said he didn’t mean it. That he was angry.

I tried to explain more but 9 year old boys are impatient and he was so upset that he made me cry that I could tell he just wanted to flee the situation.

So I let him.

But what he said stayed with me. And probably always will.

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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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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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Ski Bums

Ski Bums

(I forgot to post this on Monday. I re-read it and desperately want to edit, but I’m not allowing myself. Pictures added today.)

The kids are on Spring Break this week and I am READY. Tons of plans in the works, starting with taking them skiing today. Peter took off the day from work and we left super early.

We saw some beautiful bison on the way up. Gorgeous creatures.

I’m sitting in the lodge at Loveland watching Team Provost take on the mountain. So so so sweet! Bittersweet, actually. (I’ll explain in a minute) Peter is snowboarding and the kids are skiing for the first time. They’re naturals! I love it and am kicking myself for not getting them on skis sooner. (although judging from Peter’s sporadic texts send from the slopes, it sounds like my little Finn is getting pissed easily. He’s a perfectionist and if he’s not perfect at something the first time, he doesn’t want to do it.)

I haven’t taken them skiing sooner because we just didn’t make it a priority. Or “I” didn’t make it a priority. (I don’t know how it is in your house but if this mama doesn’t plan shit, nothing gets done.)

I loathe being cold. Loathe it. My hands and feet freeze, as does my nose. I’m not talking the usual “I’m skiing. it’s a little brisk.” No. It’s serious business. I know I’ve mentioned it before that I have Raynaud’s Syndrome, but people have no idea what that means.

My hands, feet and nose get so cold, I can’t feel them. My college gal pals used to call them “dead hands.” They go bluish white and numb. The numbness could go on for hours, even after I go inside. Sometimes it’s just a few fingers. Then they get red and hot and hurt, until they finally calm down to a normal temperature. It fucking sucks. I’m not a wimp. I can’t “buck up.” There are no magical gloves that will keep this from happening. (Believe me, my dad and I tried every single pair at REI when I was younger and would go ski.) When we got here today, while renting boots and skis, I actually had the familiar sinking, panicky feeling I got when I used to ski. I had to tell myself “Oh no, lady. You’re not going. You have hot tea, your laptop, magazines and a Larabar waiting for you in the warmth.”

I tried to buck up so I could go get some pictures of them starting out. But that didn’t last long. I actually had to run inside because after being outside for 20 minutes, it had started and I couldn’t feel my feet, hands or nose.

Keep in mind, it is SPRING here in Colorado. It’s like 45 degrees and BEAUTIFUL. A bit windy, but beautiful. There’s no way I could be up here in the winter.

Before you ask, yes I had on enough clothes. Yes, I was wearing wool socks and boots. Yes, I was wearing the warmest mittens you can buy. Yes, I was wearing a scarf and hat. Yes to all of the questions you might ask me yourself and that I have been asked a million times. Nothing helps but getting out of the cold.

I’m a little pissed today because I wish I didn’t have an ailment where this happens. (I’ve been in stores before where if the air is too cold, it’ll happen.) Not to even mention the beautiful sun which is SHINING. No sun for lupus girl. No cold weather for lupus girl.

While buying tickets for Peter and the kids, the guy behind the counter said “Where’s your gear? What’s wrong with you? Get on the mountain!”

I smiled and said something about needing to catch up on some reading but the truth is I kind of wanted to cry. Yes, another instance where I look like nothing is wrong with me. (I know I know, I should feel grateful that it’s not something worse. And that I have two legs, etc but this is my pity party so just shut it for one second.)

(sidebar: Even though I overshare quite frequently, I pride myself on NOT being that jackass who says “Yeah, I can’t ski because I have lupus and Raynaud's syndrome and blah blah blah. I was at Target the other day and said to the checker “Hey, how are you?” and she said, in a VERY leading manner “Well, I’m FANTASTIC!!!!!!!!”

“Fantastic? You never hear that. That’s great.” I said.

“Well, today is my birthday and I’m very lucky to be alive.” she said looking at me dramatically.

I hate leading statements.

She wants me to ask why she’s lucky to be alive.

I’m not going to.

Because you know what?

I could answer “Guess what, asshole? ME TOO!”

I didn’t say anything. She finished checking me out and tried her gimmick on the next victim customer.)

But today, I’m pissed because I’m not out there with the rest of my team taking on the day.

End of pity party.

On the plus side, my hair looks really good and I’m not wearing uncomfortable ski boots. Those things are brutal.

More pics of the blue eyed devils on the mountain!

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Crazy Sexy Cleanse

Crazy Sexy Cleanse

Tuesday and Wednesday were “snow days” for my children. There was only an inch of snow on the ground but it was below freezing and deemed too dangerous.

So, they were home.

And annoying.

I missed yoga on Tuesday and lunch with two lovely ladies on Wednesday. Not to mention getting nothing done, having the house trashed and them squawking at me ALL day about being bored.

Have I mentioned that I love them. Mmhmmm, I do. I really really do. (There were some cute moments: H&F playing American Girl dolls, the many many skits they performed, making cookies with them while we sang Fleetwood Mac songs…)

I’m just happier than a pig in shit that they are back in school and the house is still and quiet.

The irony is I have to volunteer at school today.

Just.Can’t.Get.Away.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Moving on.

Have you ever heard of Kris Carr? Chances are, you’ve seen her face lately because she’s been all over the place promoting her new book Crazy Sexy Diet.

This is what she says about herself:

I’m Kris Carr, best-selling author, motivational speaker and wellness coach. Back in 2003, I directed and starred in Crazy Sexy Cancer, an inspirational documentary for TLC that chronicled my journey from cancer diagnosis to juicy healthy living. I also wrote Crazy Sexy Cancer Tips and Crazy Sexy Cancer Survivor, two must-have manuals for triumphing over disease and embracing a holistic approach to recovery. My wake-up call encouraged me to make a total lifestyle upgrade inside and out. This extraordinary journey led me to crank the stress down and the joy factor up. It brought me back to nature, the garden and the people (and animals!) who fuel my spirit each day. In the process, I created a blueprint for a healthy and happy life and I want to share my secrets with fabulous you!

Love love love her. She’s beyond positive, funny, irreverent and smart. Qualities I love in a girl. Plus, what she says makes sense. She still has a very rare, incurable form of cancer, but it isn’t progressing. And she feels great.

I remember discovering her documentary shortly after I was diagnosed with lupus. So much of what she said resonated but I was lazy and it was too much for me at the time to change my lifestyle so drastically. (Um, 5 week old baby, 2 year old, just moved to a city I’d never been to before?…yeah, I’d call that overwhelmed) She wrote her first book after the documentary came out called “Crazy Sexy Cancer Tips”. I thought, and this is the freaky part,  “Hm, if I ever got cancer, that would be a really good book for me to read.”

Mkay.

My mistake was just thinking that this lifestyle (I really hate the word ‘diet’) was only for people with cancer.

I’m ready now. To try at least.

I’ve been tinkering for a while, trying to eat mostly meat free (aside from briefly becoming a porketarian in Mexico), juicing, yoga, dry brushing, supplements, tons of water, etc. But this is going to be tough. It’s also gluten free, sugar free, caffeine free, alcohol free. Oy. I’m a bit terrified but excited too.

Just so we’re clear, it’s not to lose weight. It’s to feel good. Or at least better. This way of eating has long been described as “anti-inflammatory.” I SHOULD be eating this way to help my body heal.

It’s only 21 days. Starting Monday. I’m doing it with my friend B, my most fantastic across the street neighbor, who, if you remember, was my partner in Mastectomy Madness. Yes, we both dealt with the breast cancer/double mastectomy bullshit a month apart. We share a plastic surgeon. She’s the greatest. She is a vegan already and a runner, so we’re going to keep each other in line.

We’ve already started weaning. It’s not that hard, except for my morning cup of tea, and SWEETS! Argh. I can’t seem to shake those. I swear, after 5 or 6pm, I become possessed and must eat any and all sweets.

I’m not going to be a psycho about this cleanse and I am anticipating some icky days, but I’m committing. And blogging about it holds me to it. I promise I won’t bore you with all of the details.

Off to juice. Wish me luck!

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I am…

I am…

…really wanting this shirt. Beard love!

…starting to feel a little better, although the nausea lingers. Puke.

…devouring “Boardwalk Empire” – SO GOOD!

…pouting over extra poundage. (I know, I know, no one wants to hear skinny people complain that they feel fat, but suck it. This is my blog and I can have fat days too.)

…searching etsy for valentine’s cards for the kids to give out. I hate the cartoony ones.

…wanting to buy this so I can learn Spanish

…still feeling loose and relaxed from a massage yesterday. Nothing like a masseuse with intuitive hands

…trolling cute invitation sites for HJ’s birthday party invites and a lovely friend’s baby shower invites. I heart great paper coupled with exquisite typography. It’s kind of my porn.

…excited to see The King’s Speech tomorrow

…dreaming of our next vacation

…eating Lindt dark chocolate with sea salt. OMG. (see earlier line point about extra poundage)

…looking forward to brunch with my mama and family this weekend

…reading this book and this one too and loving both.

…needing to get my hair cut. I’m starting to look like Cousin It.   

 

Happy Weekend.

XO

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Turned the Corner

Turned the Corner

Hooray! I feel better. This fact is actually comical, considering my version of “feeling better” is still rubbish compared to healthy people’s version of “feeling better.”  But, I’ll take it. Gratefully.

Don’t take your health for granted, ladies and gentleman. Just don’t.

Even with all of my ridiculous health issues, I frequently compose little post-it love notes to my body.

Dear Body,

Thanks for 37 wonderful years together. You’re doing a great job! Keep it up.”

love, Emily

Ok, on a totally random note, I watched Love Actually the other day. Many people name it as a favorite holiday movie and I hadn’t seen it in a while.

I remember thinking it was really sweet the first time I saw it.

This second viewing?

Meh.

Why is everyone referring to Natalie as “fat” in the movie? (Hugh Grant’s love interest) She’s clearly not. She’s stunning. There are 4 or 5 jokes about her being chunky, with tree trunk thighs and a huge arse. It started to irritate me. She’s clearly the most attractive girl amongst all of the naysayers. It just rubbed me the wrong way. And then at the end when she jumps into Hugh Grant’s arms he said ‘Good God, you weigh a lot.”

THAT’S supposed to be charming? I suppose it is English humor. And I WAS cranky when I watched it.

Anyhoo…

I was reminded of my deep affection for Emma Thompson, Laura Linney, Colin Firth and Liam Neeson.

Speaking of Colin Firth, have you seen A Single Man? I’m sure I’m the last on the planet not to have seen it.  Go see it.

Absolutely stunning. An astounding entre into directing by Tom Ford. Not to mention stellar performances by Colin Firth and Julianne Moore. It was really really moving. The juxtaposition of the agonizing grief he feels and the beautiful way the film is shot is mesmerizing.

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Gone away is the new bird

Gone away is the new bird

Trying to be festive and doing a pretty good job of it. Bay leaf wreath smells delightful. Tree up. Lights outside still need to be hung. (Not my department) Daily Christmas tunes. Fun plans for the blue eyed devils over Christmas break.

Reminding myself to breathe and not get stressed out. No reason to, really. After a busy Thanksgiving, I’m looking forward to an obligation free Christmas. 

I wish my body would play along and be more Holly Golightly rather than Holly Goleaden and fatigued.

I’ve been dragging myself through the days. Not many spoons to spare. Peter and the kids had a cold/flu last week and they have given it to me. I don’t get any of the same symptoms (sore throat, coughing, sniffles) or even a fever. I just get completely wiped out. Brain fog, achy, painful skin, etc. (I didn’t get the mail for three days because the thought of walking 4 houses down to our bank of mailboxes was too much.)

Add onto that nonsense is ongoing severe hip pain, which has me acting as a ping pong ball between a back doctor and my rheumatologist. Thinking it was my piriformis muscle, the back doc ordered an injection of steroids directly into that muscle, otherwise known as my ass. (interesting stuff. I asked for a DVD of the process, like a nerd.) Alas, this did nothing to alleviate pain but made me anxious and nauseous. Good old steroids.

I’m due to return to the back doctor to look at more options next week. And then the rheumatologist to see how lupus is involved. You get the picture.

Exhausting.

No appetite but food is necessary, of course. Trying to juice everyday and eat healthy because that helps. All of this food prep takes energy though. Blah.

Lots of mini pity parties, where, when no one is around, I’ll slink to the floor in the kitchen and lay my head on the cool floor thinking I can’t possibly get up.

While lying there, I silently wish that I had more energy, more spoons, to get stuff done.

Pity parties aren’t long in these parts though. I won’t allow it. Wallowing isn’t productive. I’ll listen to myself think these thoughts, sometimes cry, tell myself I’m ok, acknowledge and move on.

Life is really really good after all and I have so much to be thankful for. SO much.

Plus, the countdown is on for our family trip to Sayulita Mexico with my three besties and their fams in January. That thought brightens many of my days.

More peppy post tomorrow. I promise.  XO

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fall break–although it really shouldn’t be called a “break”

fall break–although it really shouldn’t be called a “break”

Peter is out of town and this just happens to be the week the kids are off of school for Fall Break. Full time single momdom is really freaking hard.

AND the day after he leaves, my email stops working. OF COURSE.

I said I felt like I had “locked in syndrome.” I can receive emails but I cannot reply, as they are not leaving my outbox. Grrr.

I promised the blue eyed devils that we would do one fun thing a day. And then they couldn’t squawk about being bored for the rest of the day. I am  happy to say I made good on my promise. I am exhausted and have spent way too much money but they have actually been busy every day doing fun things. Kids love structure, as do I, so it works out. They have been pretty well behaved, and exhausted at night, which is awesome.

I am way overdoing it energy wise and start to glaze over and hobble around about 5:30. I collapse into bed at 9:30 each night. I literally have had to tell Hadley she HAS to go to bed because I have to go to bed.

We’ve painted pottery, had lunches out, went to parks (it’s been GORGEOUS this week), went to the movies, roller skated, painted pumpkins (thanks, B!), went on long scooter rides, baked things…the works.

The husbie comes home tonight and we are all looking forward to him being home. The kids have made a zillion things for him, which are all lovingly wrapped and waiting for him in a big pile.

I have a doctor’s appointment today and I am so looking forward to the alone time. That says a lot considering doctor appointments blow. It’s a rheumatologist appointment so at least there is minimal poking and prodding. Plus, who doesn’t relish quiet time in a waiting room reading the latest issues of Arthritis Today with all of the other old people!?

I have been really loving all of the spooky décor for Halloween. Not the cheesy/hokey stuff but the cool stuff that you could legitimately have in your house year round, like black feather wreaths, sparkly skulls and the like.  I let the kids buy a black skull candle that when lit, bleeds red through the eyes. Every morning, first thing, Finn reminds me to “light the skull, mom! light the skull!”

After a week of being supermom, I am fantasizing about booking a room at the new Four Seasons downtown for a night. It won’t be this weekend as we have a birthday party on Saturday and family pictures on Sunday, but that would be soooo loverly.

Especially since as I compose this post, the kids are eating cupcakes for breakfast, hitting each other and seeing how many times they can say “butt.”

I’m am totally clocking out as soon as PGP gets home.

I really love this picture and can’t find the source. Apologies!

Happy Weekend, Goblins.

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Belly

Belly

According to my gastroenterologist (who is quite kind and entertains me with his bowties) there is absolutely, positively nothing physically wrong with my innards. They have run LOADS of tests on everything. He thinks it’s lupus.

Fine, I say.

But I’m terribly dubious.

Tiny shards of glass still slash around in my belly coupled with overwhelming nausea. The pain isn’t as intense as before. Or maybe I’m used to it? Pain tolerance is an interesting thing, especially when you’re always in pain.

A similar thing happened a few years ago with my appendix. Lots of random pains. Docs say nothing is wrong. Two trips to the emergency room when they THOUGHT it was my appendix, but both times it wasn’t. Then, the third time I went to the ER (good times) it was an appendicitis and they had to take it out. (The doc said I had an abnormally big appendix. Strangely, I was proud of this and asked to have a picture. I wonder if this is how boys with big peeps feel?)

Anyway, I have a sneaky suspicion that at some point they will take out my gallbladder. Until then, I suffer. Distracting, irritating pain that comes and goes and isn’t connected to food intake or meds or anything. And that’s JUST my stomach. There is still all of the rest of the lupus crap. Currently, sores in each nostril, one on my tongue, achy motherfucking hip joints, foggy brain and endless fatigue. Endless.

The crease in between my eyes is getting worse because of the constant furrowing.

Chronic pain causes stress and stress can’t be good for pain. Weird vicious cycle.

Argh.

I really don’t like to complain about it. And if you’ve seen me lately, you’d see the healthy me. The fake me.

I lay in bed now with magazines, my new laptop (hello gorgeous) and the intent to have a better day tomorrow. Or at least do a really good job at ignoring this bullshit pain. It’s date night with husbie and I want to be charming and swishy not stooped over, cranky and furrowing.

Wish me luck.

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i’m radioactive

i’m radioactive

Yesterday, I went to the hospital for a HIDA scan. I’m trying to make peace with doctor’s offices and hospitals as places that I spend a great deal of time. My thinking is “try to make the best of it.”

I brought my new book (LOVE!) and curled up with it while I waited for my turn.  During the test, I lay on this table, they put in an IV, inject me with radioactive dye and then watch and take pictures for an hour and a half while the dye makes its way through my body. It’s actually pretty cool and it wasn’t too bad as far as tests go.

I slept on and off under a lovely heated blanket while they scanned and took pictures. I daydreamed about someone coming to wax my eyebrows and tint my eyelashes. That would have been nice.

After the test, I chatted with the charming European barista in the lobby who makes a killer cappuccino. We talked about how Americans can’t make coffee. So true.  And then I took the long way home on a sunny day while listening to NPR.

Haven’t heard the results yet and I’m not expecting any news. They never find anything. Oh, the fun of lupus.

The good news is I’m not doubled over in pain, losing weight or eating Percocet like Tic Tacs anymore.

Life goes on.

I’m back to yoga and it feels glorious to be back on the mat. (For the past year, since cancer, I have been doing restorative yoga, which, while lovely, isn’t particularly strength building.) Going to a regular class showed me how weak I have become over the past year. Total spaghetti arms and legs. It’s a process…

Breakfast with RR on Sunday and lunch today with ELK has me feeling light and relaxed. I love you, Old Sames. (CTM too!)

Welcome to your Tuesday, people. I hope something makes you laugh out loud.

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i don’t recall eating shards of glass

i don’t recall eating shards of glass

I am pissed this stomach issue continues. It’s been pretty bad since JUNE. JUNE!

I specifically remember it got bad when Peter and I were in New Orleans for a week in June. I refused to deal with anything unpleasant while enjoying my time away, so I popped Percocet and was basically a hazy version of myself the entire time, not caring that my stomach hurt. 

Cut to SEPTEMBER and countless tests and procedures and med changes and NOTHING. They still don’t know.

Peter finally took me to the ER on Saturday because I was crying in a fetal position on my bed.

They did a CT scan. Nothing. They did however kindly pump me up full of Dilaudid for the pain and for that I tip my hat and say “thankyouverymuch.” I briefly identified with those poor addicts on Intervention. I get why they chase the high. Especially when it makes you forget that there are shards of glass being tossed around with hot coals in your belly.

My gastroenterologist and my rheumatologist just keep referring me back and forth to each other, which is infuriating. And why, when I talk to them, do they act like I woke them up from a nap on their vacation? As my eloquent friend EKD says “Listen dicks, this is my LIFE!”

So, each day, while the kids are at school, I rest a lot and try to distract myself by doing all the things that need to get done every day. I call my doctors and leave messages with assistants, hoping that someone calls me back that day. Sometimes I take pain pills, sometimes I don’t just to be clear headed and experience the pain to make sure I’m not making it up.

I know. I sound crazy.

So this morning I thought ‘screw you stomach’ and started cleaning maniacally and taking care of all sorts of stuff I had been neglecting. (I was channeling you, BE, because I know you’d like to be scrubbing instead of healing. XO) After being super productive, I allowed myself to rest.

I am keeping this INSANE journal of everything I’m doing to find a pattern in this madness. Eating is a total chore. I’ve been keeping up with water and watermelon seems to be fine. Don’t worry…this won’t turn into The Karen Carpenter story. I’m aware that I need to eat and am making a concerted effort. It’s just hard.

Even through all of this bullshit though, I can still find things that make happy and feel content and ever so grateful. I’ll take that. It could be so much worse…

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what it feels like to have lupus

what it feels like to have lupus

 

“You can plan all you want to. You can lie in your morning bed and fill whole notebooks with schemes and intentions. But within a single afternoon, within hours or minutes, everything you plan and everything you have fought to make yourself, can be undone as a slug is undone when salt is poured on him. And right up until the moment when you find yourself dissolving into foam you can still believe you are doing fine.”

 

from Crossing to Safety by Wallace Stegner

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how to be alone

how to be alone

Peter has been traveling a lot lately. He works from home so when he’s gone and the kids are at school, it is, as Bjork would say, “oh so quiet.”

And I love it. I really really love to be alone. It fuels me. Sometimes I find myself smiling for no reason. I’m always surprised at people who won’t go anywhere by themselves. A movie. Dinner. Exploring. Anywhere. Don’t get me wrong, I love being social as well, it’s just a delicate balance. I can’t enjoy one without the other. I NEED to be alone or I can’t function.

I found this video absolutely breathtaking and inspiring. I love everything about it. It is aptly titled “how to be alone.”

Enjoy.

          

                                                   found via dailypoetics

I hesitate sometimes to write about how I’m feeling physically because who really cares, right? No one wants to hear the daily blathering of a sick girl.

However, it soothes me if I put it down somewhere. Take it from my brain where the pain makes me feel crazy and like I somehow made it up. Sort of like if you have a host of things to do swimming in your head, write them down and it will free up space and energy. You, readers, are my sounding board, so thank you.

I’m down to the minimum of my pain meds and my body is well aware. I am exhausted and so achy that the stairs are my enemy. The stomach problems persist. MOTHERF*CK. I just can’t win.

Husband flew home today and we snuck in a nap before the kids got home from school, which was a cozy highlight of the day.

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