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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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i am still strong and surrounded by love and light

I was officially diagnosed with breast cancer on August 13, 2009. The 13th came and went without me remembering. It was only today when I was listening to a CD a friend made for me during that time that I remembered. (Side note: Can I just say I LOVE mix CDs? They are made with love and thought and give me a insight into what makes that particular person who they are.)

Back to cancer.

I don’t even know what date people use to say how long it’s been since they’ve had cancer. No one gave me a handbook.

I would probably say it would be more like Sept. 11, 2009, because that’s when they actually removed my breasts, and the cancer. But maybe it is the 13th. Who cares, really?

I can’t believe it’s been a year.

I think back frequently to the avalanche of love and support and feel so so grateful. It was a surreal time for so many reasons, both good and bad.

It seems like yesterday and a million years ago.

It really puts everything into perspective, like so many other of the big events in my life recently. Having children, being diagnosed with a chronic illness, the death of my amazing Dad….

Nothing is too big too handle. And most things are stupid and not worth worrying about.

The last step is to get my knipples tattooed, a task which I’m strangely looking forward to. I’ve always wanted a tattoo. Now I can say I have two! Although, things might get a little awkward when people ask 1) what they are and 2) if they can see them. However, flashing seems to be something I just do for sport these days so who knows!

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on the spectrum

I go through these phases where I fall upon something that fascinates me and I gobble up every available morsel of information about it.

Currently, my obsession is autism.

It started when I watched HBO’s Temple Grandin, the biopic about a woman growing up autistic in the 50s and 60s. (expertly portrayed by Claire Danes)

That led me to read one of Temple Grandin’s books, The Way I See It, as well as check out from the library ALL of the other books she has written, including a memoir by her mother

Temple Grandin is the first person to accurately describe what it feels like to have autism.  I found the information fascinating, not only as an insight into autism but human behavior in general. I really do believe that MANY people exhibit symptoms on the autism spectrum.

I find her wildly inspirational and super interesting. She is a highly regarded expert on Autism, has her doctorate in Animal Sciences and was instrumental in designing humane livestock facilities in the 80s. Phenomenal.

She spoke at TED in June 2010. Check it out.

 

I also recently saw Autism:The Musical, which I highly recommend. (you can stream it on Netflix for free)

AUTISM: THE MUSICAL counters today's bleak statistics with one woman's optimistic pledge to lead a group of autistic children in defying diagnosed expectations by writing, rehearsing and performing their own full-length musical.

I spent a good amount of time in awe of the parents.

Autism usually doesn’t present when the child is born. When it does appear (2,3 or 4 yrs usually) I would think it is almost like a death, depending on the severity, of course. The autism spectrum is quite large. In most severe cases, you have a normal, happy, healthy child and then one day, she stops looking you in the eye and starts to behave erratically. I can’t imagine the heartbreak.These parents grieve the life they thought their child would have and the life they thought they, as parents, would have.

However, as with anything, you have to keep going. It takes energy, commitment, love and positivity. You see that in this film.

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love note

Peter isn’t romantic in the traditional sense of the word. I have to remember that when my brother-in-law V does something swoon worthy for my sister. (he’s good.)

He IS romantic, though, in a delightful, surprising way. I have come to appreciate that over the years. I now know it’s the little things every day that make my life sweet, not grand gestures. (Although, it must be said, there have been lovely grand gestures as well.)

Case in point:

While out of town last week he sent me a email with “a word for you” in the subject line.

The word?

UXORIOUS

I had to look it up.

It means “excessively fond of or submissive to a wife”

I found it incredibly romantic and like to say the word out loud. I also like to pretend he had the word commissioned just for me.

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pic from weheartit.com

Happy weekend, lovers.

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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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not a rookie anymore

 

I’ve mentioned before how much I love Tavi Gevinson from StyleRookie. It astounds me that she is 14 years old and I want to bottle her up, turn her into glitter and douse Hadley with all of her magic. I also want to applaud her parents and tell them to give me all of their child rearing secrets.

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She spoke in June at Big Ideas in Toronto. You have to watch it. Could you have done this at 14? Are her speaking skills perfect? No. But it doesn’t matter.  I just beam with pride listening to her, as a woman, as a mother, and as a former awkward, 14 year old girl who wanted/needed to be heard. Her future is so bright.

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                                            header from StyleRookie

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The Kids Are All Right, I Guess

 

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I saw “The Kids Are All Right.” (skip this if you haven’t seen it or don’t want to know anything about it.)

I wish I had seen it before everyone proclaimed it to be the best movie in all of the land ever ever ever. I liked it and found it quite lovely but I much prefer seeing things without expectations.

Julianne Moore seemed a little awkward. I know her character IS awkward and insecure but at times I thought she was going to slip into her character from 30 Rock.  Do you watch 30 Rock? She was on last season as Alec Baldwin’s girlfriend from high school with this “wicked pissah” Boston accent. She talks lower like she did in the movie, so I found it distracting.

Then I was totally distracted by Mark Ruffalo’s character’s hot girlfriend because I couldn’t figure out what she had been in before. Turns out its Yaya DaCosta from America’s Next Top Model 2004. (thank you imdb!)

I did enjoy Annette Bening. She was at her best. And there were moments that summed up parenthood and family life really beautifully.

My favorite favorite moment though, and my heart fills with warm gooeyness when I think about it, was when Nic and Jules (A. Bening and J. Moore) were lying in bed facing each other and Nic says “I love you, chicken” and Jules says “I love you too, pony.”

Sigh. There was such a beautiful intimacy to it. I think about it all the time. Not to mention I loved the use of such random terms of affection. Beautiful. 

I thought it was a little heavy handed how Mark Ruffalo was depicted as such a playboy. Ok, we get it. He’s attractive and gets a lot of ass. The hetero sex scenes seemed a bit extraneous and acrobatic while the lesbian couple was completely under the covers. (although that could be a nod to the fact that when you’re married, things are just not that exciting.)

I really wanted Joni to wash and brush her hair, although I found her adorable and sweet. Same with Laser. Such a sweet kid.  Except the part where he “discovers” his friend is a douche. I’m sorry, the friend SCREAMS douche long before he even suggests they pee on a stray dog.

Overall, I enjoyed it though…especially the Heath bar that I ate greedily like a kid who snuck out of fat camp.

Did you see it? Did you like it?

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Invisible Singer

Chuck-Klosterman_Design-Crush 

                                                         found via DesignCrush

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For you both

Dear Hadley and Finn,

I know a lot of times I’m cranky and I wish I wasn’t.

I sigh A LOT out of impatience and annoyance.

I am short with you when I shouldn’t be and use that gross guttural voice to yell, that comes from deep within and makes me sound like a man.

I know sometimes I use swear words when I always thought I would NEVER. ( Nana swore about 5 times in her life and I remember where I was and what I was wearing when she did.)

As you both got on the bus for your first day of school, I felt like I was going to throw up I was so nervous. (more nervous for Finn, HJ, I knew you were going to be aces.) I didn’t cry. I was just super nauseous.  I was also excited because you’re MY people and you’re spreading your wings and FLYING! Out in the world! Alone! That’s very very cool to think I am a part of that.

My long winded point is know that I love you. Deeply. Fiercely. Happily. Always and forever. With all of my heart. Make me proud, lovies.

Love,

Mom

First Day of School from Emily Provost on Vimeo.

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lu lu lu lupus face

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Ok, so I don’t know if any of you heard or read all of the hoopla in late May about Lady Gaga having lupus. It’s not clear if she does or not. She says she has “borderline positive test results,” which is confusing to me but so is lupus so there you go. Her aunt also died from lupus.

If this is actually true, then hip hip hooray! You feeling me? I mean, I’m sorry if you do have it, Gaga, because lupus sucks. I can vouch for that. However, giving lupus the face of Lady Gaga would be fantastic as far as education and awareness.

She recently donated the necklace she wore in her Poker Face video to the Lupus Foundation of America,  which I thought was really cool. 

And now, Snoop Dog has come forward to say his daughter has lupus. Poor dear. While I feel awful for her and hope she is doing well, BRING ON THE PUBLICITY!

In my corner of the lupus world, all of my stomach tests came back fine. The ultrasound was fine. The tech even said “My, you have a beautiful pancreas!” (I shit you not.)

They now think it is my lupus meds causing the problems, specifically the ones that help me feel human every day. Awesome! (sung in really high operatic voice) I’m tapering down off of them slowly but UGH, it sucks. I’m sure that’s where my stank mood is coming from. Pain has a tendency to make you hate everyone and everything.

On the plus side, my stomach issues are getting a little better. Sounds bizarre to say that’s the plus side. I’m still particularly enjoying food at all. It’s just fuel.

I have a call into my rheumatologist to discuss the next steps with my treatment. Lessening stomach pain = great! Constant pain and super achy joints = not so great. In the morning, before I take my pills, it’s difficult to grip my tea mug. I mean, I can, but it hurts. Mornings are tough. It takes me a bit to get going and now that some of my drugs are being cut out, it’s taking me a bit LONGER to get going.

 

Seeking out humor last night, Peter and I watched Daniel Tosh’s Completely Serious. You can stream it for free on Netflix too. The demographic is very obviously men 18-42, but throw me in there too because the guy is hilarious. I love him. Warning: He is wildly offensive. Wildly. Did I say he was offensive? Yes. He is. He’s also super smart, kind of geeky and has fantastic random pop culture references. So now, I love him.

I’m sure I’m late to the Daniel Tosh party but he has a show on Comedy Central called Tosh.O. I haven’t seen it but after checking out some clips of the show, it looks hilarious. Sort of Talk Soupish. Remember when Greg Kinnear hosted Talk Soup in the olden days?

School starts tomorrow. Hell to the yes. Although excited to be free of the blue eyed devils, I have caught myself being a bit sad that I won’t have Finn with me during the day anymore.The things that we would do during the day sometimes after I picked him up at 12:30 (museums, parks, shows, etc) will no longer be an option for us. He and Hadley don’t get home until 4:15. (Note: Upon closer inspection of my memories, I am now remembering Finn mostly squawking about being bored and wanting to go home to play Mario. So don’t think it was all sunshine and rainbows. The kids a professional whiner with a penchant for sweets. He’s lucky he’s gorgeous.)

Sad. And weird. But good. Change is good. Or so they say. (I didn’t say that last night when Peter was installing new software on my computer. I sounded like ET when he screams at Gertie. Change! AHHHHH! CHANGE!!!!!!) It was very gutteral. Not cute.

 

Next Chapter: Provosts – The Elementary Years.

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seeking solace

Last night, PGP and I watched my darling nieces and nephew so the much loved A&M could have a proper date night out.

Let me set the stage.

Here are the ages: 12, 10, 8, 6 and 3. Plus, 2 puppies (10mo old Oliver Twist & 5mo old Bubba the bulldog) and Atticus Finch (a distinguished 10yrs)

I drank a Red Bull before everyone came and made peace with the impending chaos.

We had a really great time.

A few times during the evening, we all wondered aloud what it would be like if they were all mine.

It was cute to see the kids working out who would bunk up with whom. We figured out we’d have to refinish the basement.

Keep in mind while we were playing the “what if Aunt Emmy had 5 kids game” this is the tape that was playing in my head: FIVE KIDS?!?!?!? SWEET JESUS! THE INSANITY? I COULDN’T DO IT. I NEED MORE VALIUM. AND LIQUOR. AND VALIUM. AND LIQUOR!!!!!!!!!!!!!!!!”

I often wonder how I can make sure my children will be as gracious and sensitive as Owen, 12 and Lyla, 10. They kept thanking me, and apologizing for any little malfunction. (A scuffle between my 3 year old niece Ottilia and the mighty Bubba the Bulldog) Such GOOD kids. I have a soft spot for Ottilia as she is the female version of Finn, full of spirit and energy.

After they all played and ate and played, I set them up with movies and popcorn. The “little ones” Finn and Ottilia, watched a younger movie in the living room, while the older kids watched another movie in the playroom.

All of the puppies were asleep, exhausted after chasing each other around all night.

And the dishwasher was full and humming.

I went upstairs to soak and wash my feet. (Does anyone else do this? Especially in the summer, I have to wash my feet before I get into bed after trolling around all day in flip flops.)

My brother came to pick up his brood and they all left in a flurry of hugs and thank yous.

I loved the swirl of feelings I experienced as I locked the door behind them: productive, tired in a great way, and love.

This morning, I am enjoying the quiet, with the sunlight streaming in, as I peruse the images from sugarock.

Simply stunning. Do yourself a favor and go take a peek at her work. Soooo beautiful.

Happy Saturday. I hope it’s relaxing. It’s supposed to be hot hot hot here, so I’m already flipping through my mental rolodex of air-conditioned activities. Peter has the kids at karate so the dogs and I are back in bed.

One more thing –- A belated welcome to the world to Cian James and Addison Grace. I love yo mamas! Nothing better than the smell of a new baby…

things

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Respite

stretch

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Anxiety, Irritation and Frustration have been the flavors of the week lately. For the last 4 or 5 weeks, actually.

I’m just over summer and the kids and I are sick of each other.

But I’m over being a cranky ninny. Time to blow the stink off, as Peter’s grandmother would say.

Today was different when I woke up.

I would like to attribute it to a lovely ladies night out last night with my faves, where my cracked, empty cup was glued back together and filled to the brim with goodness and fun, leaving me feeling whole again. I also was wearing a dress with shoes that are not a flip flop, had make up on and my hair up. I can’t remember the last time I felt so grown up.

All four of us went to school this morning for a Rise and Shine breakfast. (Note to organizers: Don’t call something “breakfast” if it’s really just tiny blueberry muffins from Costco and watery lemonade. I mean I didn’t expect Eggs Benedict but c’mon.)

Finn and Hadley met their teachers and dropped off supplies. Finn seemed a bit overwhelmed. Shit, I felt a little overwhelmed. It’s so crazy and crowded and squawky.

We came home at 9:30am and I set up the slip n’ slide in the backyard. I put on the Beach Boys and set up camp in the shade with iced tea, cantaloupe and magazines. At noon, I announced we were having a picnic! (in my excited, overly caffeinated voice) I carefully arranged fun little lunches and they ate outside in the sun, delighted to be doing so.

We JUST came in at 1pm.

Now, they are playing castle upstairs and are dressed as the “meanest couple in the world.” Hadley looks super chic in a black shift of mine and a headband. Finn’s wearing a cape, bien sur.  There hasn’t even been a mention of TV or video games. This is a huge success for me, people.

The fighting has been minimal. I am declaring this day a raging success.

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Postcard to Peter

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                                                   pic from Le Love

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