Saturday, November 12, 2022
Sunday, October 30, 2022
Wednesday, October 12, 2022
Tuesday, October 11, 2022
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"
Thursday, September 29, 2022
So I had another phone call with the Gut doctor.
The Barren sat in on this one and asked questions and together as a trio of overeducated people, we made a decision for moving forward.
My diagnosis was laid out before me, and three options (with some variances) and I made the best decision I could with the information available to me and my physician.
I have another MRI ahead of me, this is to confirm that another horrible is not lying in wait.
Meanwhile, at the same time, there are people working on getting insurance approvals for my medicine. I will be having infusions on a regular basis to stop my white blood cells from attacking my body any further and therefore reduce the inflammation of my intestines and further endanger my appendix.
If I get a problem with my appendix it would be an emergency situation because I have an inflamed intestine and surgery threatens my colitis from spreading further. You can't attach damaged sections to damaged sections....I'm like a human Jenga tower.
I also have Crohn's disease
I am really really really struggling to process all this.
I am trying to put a happy face on, but I am finding that I am missing that overused mask.
I am stressed, scared and really have no idea what to expect. My nature is to find the silver lining of things, like....I am glad this was discovered before an emergency situation. I am hopeful I will feel better and not worse. I am thankful that my already augmented diet will be easy to maintain....
I am also trying really hard to not think of this as an hourglass...
I need to talk to someone about this, as I have not yet shared this with my bestie and brother. My therapist would be scolding me, but I guess in many ways I am not ready to say the words out loud yet. I am still too scared. I am meditating and trying to get more sleep, and get my yoga practice back in line...as I know all these these help manage stress, but I am finding, that even they are coming up lacking.
I want to run, run far away
run back in time, run away to have fun...run away from all this adulting. I want to run away from fear and anger and the ideas of being weak or fragile or unable to be seen as a normal person.
I don't know how to do that yet. I am not able to focus on artmaking as deadline and opportunities are speeding past and I need to grab them...I need to feel pieces of me that don't feel broken or wrong or out of line.
When I was saying my thank you's to the doctor, he said " Don't pin it on your heritage or your past NSAIDs use....your immune system simply got it wrong..... We are going to try and fix that"
I feel so much, all at the same time...
Wednesday, September 21, 2022
This might be a case of "the horse that has already left the barn"
to close the stable door after the horse has bolted
Monday, August 29, 2022
I have night terrors.
I have had some sort of interrupted sleep since my earliest memories. As a child I remember there was a figure in the hallway that I could see from my bed, calling me out of bed and to them. I never got out of bed for it; once they left I would run to my parents bed, shaking and scared. My mother soothed me and lulled me back to sleep next to her. My father had less patience for it, and so I always ran to her side of the bed, or crawled to her side of the bed and slept on the floor next to her.
I have always had conversations with those who are no longer here, in my dreams they would come and bring messages and I welcome those encounters. I sometimes wake in tears from the beautiful feelings that wash over me after those encounters.
My grandmothers and grandfather amongst many others have visited me multiple times.
I get great comfort from those dreams and encounters.
My therapist always mentioned that my veil between sleep and wake is thin and I travel effortless between them. I agree. I often visit people or places right after falling asleep...
but sometimes things go sideways.
My visits can become nightmares, looping frustrating situations over and over, or scaring me with harm to those I love....and then there are terrors.
Last night I had a whopper.
The scenario is almost always the same, I fall asleep and then...in the darkness I am suddenly aware of someone leaning over me, or approaching the bedside. A robber or a threat of some other nature...
in response I scream, a full lung-filled scream, through the veils, through the layers of sleep and into the darkened room. Shooting my poor darling Barren out of his peaceful slumber and into shear panic.
I am asleep and am often startled awake by the sound of my own voice or The Barren exploding in fear with words or my name.
Last night was a memory of taking a deep breath and screaming...I saw a man in a plaid shirt in our room, on The Barrens side of the bed, terrified that we were in danger I screamed, loud and according to The Barren in a bloodcurdling manner.
I awoke from the sound of my voice and The Barren saying my name.
When I am startled awake, I am shaking, my heart is beating almost too fast for me to process and I am confused, like I have been ripped across time and space. I am left feeling deeply mortified.
The Barren soothes me and reminds me that I am safe.
We have done everything we can to resolve this, we have moved the furniture around in the whole house to change the Feng Shui. We have burned sage to clear the energy, The Barren even got hex remover when in New Orleans and we've used that. I have spray to clear the energy I got from an energy worker, I have done meditation breathing, I repeat mantras out loud throughout the day to remind myself "no one in my dreams can harm me or The Barren or our cats or home"
Sometimes I get a feeling during the day, like darkness is trying to creep in, and I have learned to sense it and say out loud that it is not welcome or allowed in my home or my mind. I have also tried to focus on more of a lucid sleep, where when dreaming I recognize when things are starting to go astray and take control of it so it doesn't scare or frustrate me. I don't watch scary movies, I don't read scary books...this is adding to my stress. I am afraid of falling asleep or scaring my beloved again.
I am still quite shaken from last nights event, and The Barren is currently taking a nap as it took a while for us to relax, I think The Barren was also expecting a knock on the door from the police or a worried neighbor. Thankfully neither happened.
Do you have nightmares, or terrors? What do you do to make things better?
I'll write about other things, but this is taking the most real estate in my mind right now and I wanted to get it out and say my mantras in type and aloud in another dimension.