Saturday, November 12, 2022

Forked

 


I'm exhausted

I have made it to the other side of the constant testing, I think.
The harrowing MRI turned out fine, nothing bad found, no new information.
So for the record, these MRI's are crappy ways to spend $100 at a time.
anyways, that part seems to be done.

I had my annual check in with my GP physician yesterday, I was assigned a new one.
When she entered the room she had a long list of notes on me as she had reviewed my record...kind of.
I spent most of the appointment watching her chart my current situation.
She asked a couple questions, I didn't have to have a pelvic because another department does those now and when she started telling me about my dense breasts, I told her I pay outta pocket for those ultrasounds too. I was overwhelmed...
I do know that at one point I said that "this was easier than my decade of infertility"
 Between you and me, I was still quite overwhelmed and feeling traumatized.

She stopped everything, looked at me, dead in the eyes and said:
Are you feeling underwater, do you feel like medication would help?
I was sort of taken aback, I think mostly by how close she was to my face, and the unblinking eye contact....but I said I don't think I am there yet.
She said things like: manage chronic illness and you are a menopausal woman 
If those weren't enough lovely gems from the visit she went on to tell me that she believes I have a secondary disease with my UC/Crohn's 
Hyperthyroidism.
She scheduled me for a bone density exam, I got a breast exam and then it was done.
I got dressed, got three shots and went to my car to cry, again!
I am spun...I am in a land I know, but all my markers are not familiar to me.
I go to all my appointments alone...I am not sure if a parent, lover or friend would have made this any better...but I know I am not okay.
In fact:
Stick a fork in me, I'm done.



So here I am a leftover, emotional mess.
Not knowing which direction to turn first.

I did have a good start to the week. 

I am not going to leave this post without sharing good things too.
I met with a curator for the yearly exhibition I am thankful for being invited to for the last 13 years. 
I was juried into it once again, and over the moon about that.
If that wasn't enough, the best part was that I got to show some work in person to the gallery and I will be in another exhibition in March! 
I am scrambling to make a lot more work between now and then.
That was a good thing.
So in between battling some serious self doubt, creative blocks and just straight up sadness I made something of interest. Something unique.
Now, if I can only stop making new diseases for my body!

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


Thursday, September 29, 2022

Call Me

 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

Wild Stallion

This might be a case of "the horse that has already left the barn" 

to close the stable door after the horse has bolted

to have tried to prevent something happening, but to have done so too late to prevent damage being done

It appears that my body is resisting.
I have massively altered my diet since my last ER visit back in April and June. 
To date I have lost close to 20 pounds.
I have been poked, prodded, illuminated from the inside out. Photographed, x-rayed, CT scanned, looked at via magnets. I have given blood and poop and tears; testing everything that could be imagined and all signs point to the same place.
Although I don't like the answer, it appears that everyone that has seen my stuff all agree, it is the same.
I have Colitis.
it is only a very small section of my intestines, but my gut doctor wants to put me on medicine, as the small portion of my intestine that is inflamed is very very near my appendix and if one imposes anymore on it, it could be bad bad bad.
So now I am faced with a lifetime of immunosuppressant drugs.
As you can imagine, I have a billion questions about them.
I prize my immune system, it is like my superpower, so the idea that I will need to suppress it for the rest of my life is nothing short of terrifying.

Once again, the news was delivered via a casual phone call.
When I mentioned that I wanted to continue the watch and wait method is when he mentioned that even with all my work "we are most likely dealing with a horse that has already left the stable." 
My decades of pain killers for my endo and migraines most likely played a role in my immune system attacking my intestine and so in an effort to battle one auto immune disease I created another.

What an epiphany about all this horrible.

Monday, August 29, 2022

Sleep Interrupted

 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.