No news...

is frustrating news. With the sleep deprivation and stress tests, Dr. assures me that data is still being collected, just not enough for any answers yet. I wish I could give a more detailed update, but I just can't yet. I got nothing.

 I want to explain more, to give insight, to explain how I'm feeling, but right now it's this perfectly even combination of feeling everything and nothing all at once. It's almost as though the positivity I feel is completely balanced by the unfortunate negativity that is clinging to me so I am just blank. Just there balancing in between. I feel it all, but I am struggling to find the words to describe or sometimes even identify what it is that I am feeling. Much of it is frustration, yet much of it is still appreciation and gratitude (for my people, for the love- I feel it), but there is also still there is that annoying presence of my own irritability. Yes, I realize that's like using a double negative in a sentence. But it's true. I am annoyed by my own irritance. I annoy myself right now. I want to just hurry up, knock out a few good seizures and get back to my every day life. I miss Bob, I miss my bike, I miss the store, and lord knows I miss just hanging out with Lucas. Hanging out meaning not just stating at each other with sad or worried eyes, not counting down the hours and minutes until I can go to sleep, not having him have to walk me into the restroom and carry my cords every time I have to pee. 

See there I go getting all negative and down. I should be appreciating all that I have. This place is great. The staff is so kind, generous with their time, and genuine in their care. The bed is perfectly comfortable. It adjusts and has new clean sheets, tons of pillows, and I feel as though I am nestled in a little safe space. Which is good. I am grateful for it, I am. 

I just don't want to be in a padded bed. I don't want to have strangers coming in my room every half hour to check something, do something, fix something. I want to be able to pee on my own. I want to be able to take my own shower and not have to profusely thank the kind woman for wet wiping me down. I just want to wear an old grimey sweatshirt instead of this pristine, fully functioning and oh so appropriate hospital gown.

Ugh. This is my headspace. So much juxtaposition. This is my experience. Right now I have three beverages on a tray in front of me. I love beverages. I have water, champagne, and coffee. Three of my favorite beverages. They are within reaching distance, provided for my consumption. I want to be appreciative. I want to point out how fortunate I am. How much of a treat it is to have bubbles on a Wednesday morning before 10:00am. Next to that appreciation in my head, sits the awful awareness that the only reason why I am in bed on a Wednesday is because it is a hospital bed. The only reason why I am drinking champagne is because there's a good chance it's going to trigger a seizure. 

Fuck that. I mean I like champagne and all, but I just want this to be over already. I've got a sweet little life I need to get back to. 

And there's that emotional update I didn't think I had in me. So now ya know.

Pops and Momo

Pop hard at work on a crossword.

 Momo watching SnL with me.

Both are decked out in their purple. I am so grateful.

 

Be still my heart...

(Found this unpublished pos from October, and had to post it. Makes me smile, and I can use that right now.)

So much has happened lately. So much happy, so much excitement, so many hopes and dreams coming into fruition with hard work. But for now, I appreciate right now. 

My boys on a Saturday morning. Just looking, and smelling, and feeling the autumn air. Caught on camera just being. I am grateful. 

#dareto

Breathe. Smile. Trust. (sip coffee)

That's what I am doing right now.

I have been admitted into the hospital for a week of testing. "Testing" is what I am calling it. It's actually, called a video EEG. It's been planned about three months in advance, and I was quite tempted to cancel it. 

...I'm fine. I will be fine. I need to be at work. I probably don't even have epilepsy... That's what I was telling myself.

 False. I have learned that I am not "fine". lululemon will survive with my short absence, and as much as I have enjoyed denial, my very well respected neurologist insists that I do indeed have Epilepsy and it needs to be taken more seriously. With more recent seizures, and a growing fear of what those seizures might indicate, I am pretty happy I kept my appointment. 

What's happening now is that I have (what feels like) a million electrodes glued to my head, I have an iv stuck in my arm, a doo dad on my finger, and half dozen wires stuck around my torso. Oh, and I also have two cameras filming me with specialists watching the film on a live feed. Ugh. Just watching. Watching, and waiting, and hoping that I have a seizure sooner rather than later so they can  capture it all on various types of film, analyze it, compare it with my prior eeg's, my ekg's, my blood tests, mri's, etc and figure out why my meds aren't working. From there, they'll come up with a new solution, one that is effective and can even possibly grant me some freedoms- driving would be lovely. 

It could be worse, absolutely. I have a tv and wifi (neither of which we have at home), and I am allowed all the caffeine I can drink with possibilities of champagne in the days coming... If it means it might bring the seizures on sooner rather than later, I say pop the bubbly!

It could also be better, for sure. I wouldn't have a barrage of beeping everytime I unplug my heart thing to go pee. I wouldn't be sore from the digging needles, I wouldn't have to be on sleep deprivation, and I wouldn't be scared of what's gonna happen tomorrow when my meds are cut off. Am I going to feel it coming? Will I  have a huge chunk of my tongue bit off after? Is Lucas going to have to see me in my full convulsions? Are the doctors going to find the answers they're looking for? And the biggest question- do I want to know those answers?

All these thoughts are flying through my head right now. In addition, I feel incredibly, painfully vulnerable talking about it. It's uncomfortable. I don't know what to say. No one knows what to say. There is nothing to be said. I don't like sympathy and I refuse pity. I am strong. I am able. I am confident. (I keep telling myself). I dare to share this because it is my way of bringing awareness. November is epilepsy awareness month and if I can't share it now, when can I?

So I share. Little by little, I will keep the postings coming, and I will do what I can.

 I can breathe, smile, and trust. I will keep drinking my coffee. I will also keep kissing and loving this incredible partner that I have who is willing to cram into this bed next to me and be my partner through it all. More than the fear, the worry, the uncertainty, I feel gratitude. I trust. 

This could very well turn into a food journal.

Dinner last night. Rather than going to a restaurant, we walked down to a sweet little market. It was one part whole foods, one part co-op. We dined on the patio of our apartment- French bread, havarti, soppresotta, spicy hummus and carrots. With a little local vino to round it out. We are happy kids.Breakfast this morning. 

That's a salted caramel old fashioned and a ham and cheese croissant that we shared. Heaven. I think we took the smallest bites possible to savor every flavor.

#VivEhVancouver

Seattle is our first stop on the way to Vancouver. We spent some time in the raddest airport shop, SubPop. Perfect place to listen to some tunes and leave our marks in the sketch books.

Sweater Weather

It has been a hell of a summer- filled with joy, challenges, hard work, growth, and lots of adventure. I am ready for this new season, I am ready for change, more growth and I am ready to trust that we can take on whatever the future holds.