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.

Read more »

dune buggy birthday

dune buggy birthday

My bro-in-law V was in my wacky dream the night before last. I found it funny because he’s never in my dreams but then again, today is his birthday so perhaps that’s why he was floating around in my subconscious.

So, here’s the dream:

V and I were out drinking beer at a bar. I mention beer because anyone who knows me, knows I don’t drink beer, really. That stuck out to me. But we were drinking copious amounts of it.

We were partying. And having a great time. V is really really funny and charismatic.

We kept calling Peter to get him to meet up with us. (Where was Meg?) I remember the cell phone was really big. Like, 1995 big.

After not being able to reach him, we decided to jump in the car and go find him.

Only, we didn’t jump into a car. It was a dune buggy. Full on. And not in an ironic way. We were serious in the dream. Like this was the car we were driving for reals. (Although, I should say I do not condone drinking and driving dune buggys ….)

                                                 +++

Anyway, while driving, I noticed the sun coming up. Excitedly, I said to V “The sun is coming up! I haven’t stayed up until the sun came up in YEARS!”

And then my alarm went off and I was faced with Oliver licking me and Finn’s sweet face standing next to my bed.

My first thought was “I only just got home and went to bed! How can I get through this day?!?!?” And then relief set in when I got it together and remembered it was only a dream.

Happy happy birthday, dear brother-in-law. I’m forever delighted and very proud that you are in our tribe. I would say “let’s go out and celebrate” but we kind of already did. We had a great time and neither one of us is tired or hung over!

Read more »

Thursday Loves

Thursday Loves

+ Trolling online for all of the goodies regarding Fashion Week. It would be so fun to be there! Of course, I would be the one in GAP jeans and a long sleeved black tee.

+ Hadley loves listening to books on CD while drawing in her room. We’ve checked out ALL of the Ramona series and guess who narrates every single one? Stockard Channing. It’s divine. I often find myself wandering into HJ’s room when it’s on and staying awhile.

+ Caprese salads with my own tomatoes

+ My excitement over getting Jonathan Franzen’s new book, Freedom. I listened to an interview on Fresh Air today and it made me giddy. It doesn’t take much to get me going. I’m kind of a goob that way.

+ Dreaming about our trip to Sayulita in January with my besties and fams. Yes, please.

                    

                                      picture from Under The Pyramids

+ Skeletons are always fascinating to me. They’re beautiful. H is on a mission to collect skulls. So far we have a beaver skull and a mouse skull. On our mantel. Yup. We’re those people.

+ Peter. Always. Pure and simple.

Read more »

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…

Read more »

I am…

I am…

by Hadley Provost, age 8

I am friendly and an animal lover.

I wonder how animals talk to each other.

I hear the whisper of all statues.

I see a dragon’s eyes.

I want a kitten.

I am friendly and an animal lover.

 

I pretend I am the President.

I feel, if I really tried to, I could fly with the birds.

I touch the hair of a monster.

I worry about my gecko, Sonny.

I cry when my pets cry.

I am friendly and an animal lover.

 

I understand that I have a little brother.

I say circuses should NOT have animals.

I dream about my old cat, Stan.

I try to be a good example for Finn.

I hope my family will never be poor.

I am friendly and an animal lover.

 

I just loved this. I pulled it out of her backpack, read it and then sat right down on the floor and read it again. The words in bold were there and she filled in the rest.

I don’t feel emotional really at the normal milestones during my children’s lives. I felt a little bad this year as I cheerfully put my kids on the bus on the first day of school without shedding a tear.

Randomly though, something like this will hit me and make me cry just because I’m in awe. I love the insight into her creative little mind. My sweet rare bird.

Read more »

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

Read more »

i am still strong and surrounded by love and light

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!

Read more »