Sunday, October 30, 2022

Bound

 

You have got to be kidding me...

I went for an MRI this morning, the doctor is wanting to knock something else of the horrible list.
I have had MRIs before, more times than I'd like, but all seemingly necessary.

Today though, today I had a problem.
I arrived ahead of time, got in right away...and in a great shift, was not required to drink strange "juices" or volunteer a vein for glowing fluids.
Instead it was a strait "let the magnets take the photos" kind of MRI.
I went in, relaxed and un-phased and was in my double gown situation (one put on forward and one backwards to avoid any peep show) and sat on the MRI bench and was then told that I'd be heading into the machine head first and backwards....I was strapped in, arms bound at my side and elevated and inserted into the machine....one of the techs said..." are you okay" and I said "NO, No I am NOT okay...."
to which I was pulled out of the machine, and had to catch my breath.
I was having a FULL BLOWN PANIC attack

I asked to look back at the machine, so I could "confirm I was not going into a sarcophagus" 
I did a quick scan of what was triggering me and asked....
"Can I release my arms?"...it was allowed and one of the techs asked if maybe a towel over my eyes would help, I agreed to that.
I was very thankful for the kindness and I apologized a million times, to which they said all was fine.
I was asked if it was better, I said yes and back into the machine I went to complete the test.
It was a half hour of booming an clanking noises...breathing exercises and then I was done.
I thanked them again...got dressed and left. 
Shuffled off to my car and cried.
I was mortified, embarrassed and suddenly understood why horses are given blinders.
The less I could see, the safer I felt.
Counter intuitive to my years of meditation, I needed to massively disassociate.
Ostrich myself to not feel bound and threatened.

I had my second infusion this week, I had a breakthrough pain episode this week, I had a massive deadline this week and then this MRI.
Maybe I really needed to just hide, maybe all of this is overwhelming...
maybe I do need to escape.

My 20th wedding anniversary is Tuesday
We have a night at a local boutique hotel booked, but we are both at a loss.
We can't travel right now, we can't break away just yet, it is all in the air.
BUT, we are gonna have time together and in a different bed.
It is also the anniversary of our first miscarriage and a death anniversary of a beloved pet.

We were social yesterday, going to a family event to carve pumpkins, and then follow it with a Halloween adults only party...but everyone was talking about their kids and how it is having teenagers or younger kiddos.
The Barren and I just exchanged looks most of the time and 
nodded and said "oh my, yeah that sounds difficult"

These days have me mentally bound too.
I reminisce on the days that we had hoped for, the times that were supposed to happen.
Our G-daughter is the age of our star child, she is a physical reminder of passing time.
I adore this time of year, the wind down with joyful punctuations of celebration. 

Building our memory space for Dia De Los Muertos today, I placed a doll amongst the photos of family long gone. Marigolds line the edge of the space, a figurine of a black dog to guide the spirits, candles to light the way. Joyful calaveras to help with the celebration. I made a space to remember our beloved animal companions who are no longer with us.
After everything is in place...
Something magical happens in the quiet of the house, after we put out drinks and food for the spirits...the house feels full, a place of calm and filled with love.
There is no sadness, our minds fill with happy memories of those visiting.

Maybe I'll hide (stick my head in the clouds) for a few days with my sweetie, forget all that is required of me, forget all the doctors appointments, the state of the world, the general malaise and 
simply float in those unbound moments of what if.

Wishing you all an unbound hallows eve
celebrate your personal magic
because you ARE magical


Wednesday, October 12, 2022

Loading dose

 

Today I started my first dose of colitis/crohns medication.
I went to meditation this morning and wore a purple bra
(I am a firm believer that purple is a good luck color, well for me it is)
The nurse is nice and will be my nurse from here on out. 
We got the baby question out of the way right at the start with, 
"do you have any children"
to which I said, "no we don't, we just have each other"

The infusion center is in an allergy clinic, so there was a large group of people there to get allergy meds, crying babies and a lot of commotion.
The Barren came with me, and although he looked away when the needle stuff happened 
he was my solid dude 💓

Todays dose is called a loading dose, as they are loading a smaller dose today and then in two weeks I get another dose. I will be monitored for a bit afterwards to make sure I don't have any reactions. The another dose in 6weeks and then 8 weeks...and then I am on the schedule of every 8 weeks.
In between I will be having blood, stool and scans to monitor progress.
The medicine is designed to specifically target my gut, but it still makes me immunocompromised.
I will continue my vegan gluten free lifestyle, for life.

After the infusion we raced home, because The Barren had a work call and then the doorbell rang...
outside my front door was a man holding a huge arrangement of flowers.
My sweet Barren had a bouquet delivered.
The message read:
"this is one crazy ride, but I am glad I am on it with you"
💓💓💓

more tears, but also smiles

Tuesday, October 11, 2022

We close our eyes

A Woman is Supporting Another Woman, Who has fainted upon Reading a Letter (1807)
Christoffer Wilhelm Eckersberg (Danish, 1783 – 1853)


 I start my infusions tomorrow.

Last Wednesday I got the call that all was set into motion. Since that call, the date has been changed the location has been changed and I have learned the name of my nurse. Plus made appointments for several other appointments and tests that need to be completed.

I have also rushed a friend to the ER 
and dealt with many stressful situations that comprise a life.

I have shared the information with my bestie, my brother, my meditation teacher, my massage therapist (boy I sound quite affluent) but not my parents.

I am having concerns with sharing it with them until after my first session so I can answer all the abstract questions my mother will ask and that way I can still feel a micron of control until then. Also my father is having some memory issues and the last thing I need is a daily call asking in a childlike voice " how I am feeling" when all I want to is to feel strong and powerful and capable.

I told my bestie that I don't want:

" the last thing I want is to be a willowy Victorian woman 
wasting away in the corner who everyone treats with caution"

I am now trying to get used to the day being peppered with medical calls...all of which seem to send a wave of chaos and panic through me and my instinctual reaction is to run....
leave the house, do anything else than what I have to do.

I have managed to make a couple things, and although it feels like pulling taffy, and that it is a steep, steep incline; I am seriously determined to keep on keeping on. 

I have to see the lifestyle I want, instead of the life that someone else thinks I should have.
I sound like a verbal vision board...
I clearly am doing anything and everything in my power to normalize this WHOLE experience.
The Barren is coming with me to the first infusion, because after asking, the nurse said he could come to the first one

I have also started a visual for my mantras:
I am a boat on the water, bobbing on the surface.
No water can get into me or sink me
 I can ride out each wave with curiosity and calm.

This is a whole new world...
I am really just guessing at shit now