Can you see it?
Level 6-7 migraine. Another day of Migraine. My constant companion. Oh how I wish I could punch my head thru a plate glass window.

“Never Say Never”

Some things we don’t talk about
Rather do without
And just hold the smile
Falling in and out of love
Ashamed and proud of
Together all the while

You can never say never
While we don’t know when
But time and time again
Younger now than we were before

Don’t let me go
Don’t let me go
Don’t let me go

Picture, you’re the queen of everything
As far as the eye can see
Under your command
I will be your guardian
When all is crumbling
I steady your hand

You can never say never
While we don’t know when
Time, time, time again
Younger now than we were before

Don’t let me go
Don’t let me go
Don’t let me go

We’re falling apart and coming together again and again
We’re growing apart but we pull it together, pull it together, together again

Don’t let me go
Don’t let me go
Don’t let me go

Happy happy Easter…

And most importantly…

I dreamt of my grandmother 2 nights ago.

I was never very close to her. She died from influenza and heart complications when I was a teen – about ~28 years ago. I remember not crying when it happened. This disturbed me so much; I thought something was wrong with me. I sobbed to a counselor in college about it. She looked at me funny, “Um, you’re crying right now.” 😨 Doi. I was! She said that my reaction was ok…Not everyone, even members of our family, are a devasting loss for us. I felt more as a source of strength for my cousin and mother at the time of the funeral. So that was my role.

I feel like I never really knew her. We’d rarely see each other, we never connected on anything but a social level. It was awkward. I did love her; I didn’t know her. She didn’t know me – well, besides what my mother told her about me. We shared no special experiences.

In my dream it was raining and nighttime and I was trying to find a parking spot at the hospital where my grandmother was a patient. I got to her room, and there she was…Standing in the room in a thin, white robe. She was obviously confused w dementia. I couldn’t really see her face. I took her gently in my arms and held her. And kept hugging her. It felt marveloous. I knew she was having glaucoma surgery soon for a very unstable (?) left eye, so I was very careful not to touch her face.

It was serene. It reminded me of the warm embrace of family. If there’s such a thing.
Then it got weird: her room was being watched and we found 2 pairs of super nightvision binoculars hidden in the shades of her hospital room. She let me have a pair. I was all excited about the idea of a gift from her. I couldn’t remember one before.

…From France. #KoboRomanceParisNormandy2017

I’m jet lagged. I’m mad at Air France & demanding a refund of 85 Euros. I’m trying to catch up with laundry, have faith in home insurance for our disaster leak & re-enter life. But most of all, I feel GOOD. Was it our getaway? Is it medication catching up? Idk. But it doesn’t much matter. I have a migraine. I’m still having bad gut issues (scheduled doc appt tomorrow) but I feel a calm. An Easter calm. 🙂

The industrial​ fans – I think there are 8 – blow 24/7. Wonderful, loud, irritating noise for my head. Hooray. They are blowing dust all over as well, probably from where they removed the kitchen ceiling. The ceiling. It’s fucking gone 😭 That’s fine. S’all good. My brain is just swimming. I have seen construction and damages but never anything like this. The kitchen rained poo water. It was amazing. 

Our home, my greatest place of refuge. The place I feel comfort, love and safety…Is broken. Broken. And so is my heart.💔

Dying

But too sick to die.

Robyn clogged her toilet last night.it was raining dirty water in the kitchen. Bucketfuls. Emergency leak company came at 1:30am. It will take three days to complete disaster project. Marc and I leave Tues.

When the guys were working working, I was in my bathroom having diarrhea and vomiting simultaneously.

I cannot explain how much my head is hurting. We have the tornado warnings now. I’ve taken my last phenergen. Once the vomiting starts, it’s hard to get my head under control. I almost never get to vomiting. RA and SIJD are joining in for the fun.

The biggest leak disaster I’ve ever seen…

The upstairs crew:

The disaster relief came at 01:30 and worked at least an hour. This morning I found this …And this is how the next three days will be…

Seriously questioning leaving the children for our trip to France.

I wrote this to Robyn this morning:

*** Erika wants to know “What are u wearing?” Thank you for the well wishes. Why bother posting at all? Just scroll past…Keep scrolling.***

***She also will never answer me. There’s only *so much* some people can give a shit about.***

*** Some people are just mean***

And I should stop posting migraine info and pics. It just makes people uncomfortable. And I wouldn’t want that. Awareness vs people’s comfort.😢

Stigma: just SHUT UP about it. 

Stigma is so affirming and validating.

Friends. Best friends. I wonder who needs them. I post too much of my pain on Facebook, I guess. I woke up with blinding 9 migraine at 07:30. Just blinding. Every movement spiked me to a 10…But I had to move…Had to get ice…Had to take migraine medicine. Stayed there still for an hour and a half. Gripping Marc’s shoulder every once in awhile.

Eventually I was down to a 7-8. Insanity. I was able to do some work on FB and catch up with my friends’ lives. I didn’t want to mention the migraine…So I found a poignant picture. I do love migraine art. I think everyone is aware of that. Art is a way to create and process pain. 

So I posted only this:

****

I’m “doing it wrong” according to Erika. And she would know, she survived breast cancer! A whole year of her life was breast cancer. She would know.

Thanks for the support. I’ll just shut up about my pain. And here are some more images:

Took a 45 min walk today with my neighbor friend Jill. She suffers from Chronic Migraine too. She asked me Monday and I couldn’t schedule til today (Wed). Which is hilarious and so typical Chronics. I woke with a migraine (Austin mornings are cloudy and moist and hurt). The pain lowered with sleep and meds as the weather burned off. I was able to meet Jill just a half hour later than our original time.

Jill is super sweet and very interesting. She has a son Ken’s age, a daughter a grade above Corey and another daughter a year behind Corey.

The hot flashes continue. So uncomfortable and I’m anxious to hear what my labs and the doc says Friday. I had to rest the rest of the day. And my feet hurt. Lol. My jaw is clenching bad. Botox in just over a week – ahh!

Made dinner tonight. Trying to save us money by only making meals – no restaurants or take out.