Published

 

Many years ago I had some work in an art of infertility exhibition, it was far from me so I sent my work and got to see photos of it on display with other artists work about the same theme.

A couple of years ago I was approached by a research group about my art project and my experience with infertility. I answered some research questions and thought that was that. 

Then last year I was approached by that same group and asked if I could share some art and a statement from my show. 

I did that as well, seems that their research, PHD paper was going to be published and created into a book and would I like to be part of that.

Thinking about my mark in the world I was cautious but open to the idea and wanted to hear more. Then about 8 months ago, I got paperwork from a university publisher, it had some bad wording in it, and I told the project I needed to decline on the opportunity. Turns out standing up for my self and my work had a positive effect, as other people in the project objected too and so the contract was rewritten and there was a green light.

Well, here I am sharing with you that the book has come to reality and has been made and is releasing later this month! All the artists/contributors involved retained their copyright and were "paid" in a single copy of the publication. 

The book is a beautiful collection of stories of infertility from a myriad of perspectives and it is heartbreaking and beautiful, and my artwork and words are collected in it.

It is quite surreal, and a deep wonderful thing from so much loss.

There will be publicity events all across the US, and I have agreed to be available if there is something that sits okay with me.

You can read more about the book: HERE

Book name: Infertilities: a curation

Memory of loss, and a little growth

**trigger warning: miscarriage** 

Today marks the anniversary of my final miscarriage.

I wrote about it HERE when it was happening.

I was alone, and one of my old-man cats sat on me or sat with me the whole time. It was unlike him, and now I am thankful he sensed that I was very alone, and losing my final attempt of motherhood. He is woven into the memory of the days.

Since then, when this day arrives I remember that final loss as the end of the pavement. A path I was familiar with that was now suddenly, unpaved and new and unknown. I took a self portrait that day, strangely I had a slight smirk. Maybe it was reflex to smile, and then at the same moment, I realized it was not happy or sad...but just was. That is the lingering feeling now.

It just was

I think of my star child often; sometimes they come to me in visions or dreams....other times I suddenly feel like I have forgotten to pick someone up or that the person I want to turn to has walked away, and I am left standing alone, staring into the ether.

They never got big enough to ever know completely. 

Now several years later, it is a day like others, except there are pauses along the way that I take to reflect and send love out. Much like days of loss for my grandparents and friends and companions that have left this plane of existence.

I think that is growth...I have learned how to carry the sorrow in a manageable way. Does that mean I have forgotten it or moved on....not really. The Barren has been pointing out and gazing at small humans much more often these days and I think that has been a revisited heartbreak for me and him. We are emotional and empathic people, so this is natural for us...but with a bitter twist of our own loss folded in.

So I send extra gentle hugs out to you all, as you remember your losses after reading this.

We are the broken but not lost

Bread was my life

I was reading posts this last week, well I read them on almost a daily basis and read this one by Mel of Stirrup Queens during her weekly Roundup, and it seemed to trigger me. 

The question was: Which favorite food would you never eat again if you were told you had to give it up? You couldn’t cheat and name something you didn’t really love. You had to take one of your favorites and say goodbye forever.

Sadly, this isn't a hypothetical question for me anymore.

For me it is Bread: toast, sandwiches...there are many others, but this one seems to always float back to the top of the puddle of tears.

In fact even reading the question brought back memories from the schoolyard of who you'd rescue from a sinking ship, your mom, dad or brother...and I could never answer the question, as it always sent me into a spiral of sadness and despair trying to figure out how I could save them all...

I have found my list to be extensive and at times VERY HEAVY. Laden with sadness and restrictions and constant thinking how to make situations work.

This is not a foreign landscape for me, but as of the last almost year, my trek has become almost vertical in its scale. Becoming vegetarian at 16 was new territory, then vegan at 42, then, vegan, gluten-free and anti-inflammatory/no nightshades at 52 has definitely been the hardest.

I have always been a person who isn't comfortable at ALL with people making a fuss over MY food choices. I will agree to go anywhere when dining with family or friends. Always navigating the menu to not make it a big deal and remind myself that I am there for the company not the food.

The Barren and I have worked hard on finding something in many of our favorite locations, so that he can on a whim bring home something or we can have a date out out. He is BEYOND graceful at always trying to find someplace new when we go on adventures to make sure I can fill my belly with something.

But I miss many foods: I miss summer tomatoes and grilled eggplant and bell peppers. I miss not being afraid of being in pain over a simple food choice. I miss the culture that is food...

*I am having a small pity party*

At my last infusion my nurse asked me if I would like any snacks while I sat and waited for my IV to finish, and I smiled and said no thank you. She then realized that I couldn't, and said I was so strong.

This made me feel uncomfortable, it seemed like she picked the wrong words.

I am a rule follower, my doctor laughed at the idea that my vice is a meal with white rice or a white potato in a soup.

Sometimes I feel the weight of having to make all these choices every day.

So my pick to the question is bread....I have tried A LOT of the varieties available.

I have even been known to go to other cities to find a loaf of vegan gluten free bread, 

so see if it tastes okay.

Only one bakery (about an hour away) made one I liked, but sadly, they just shuttered their store because of increasing costs.

Most of the commercially produced bread has eggs or leaves a bitter after taste from sorghum maybe?

So I am left without cinnamon toast as a comfort food.

Mind you, I am a creative woman, and 

I have started making a stack of new recipes...but frankly it is becoming exhausting.

I think I foreshadowed this happening when my Mama needed to find soy milk when I stopped breastfeeding and it was nearly impossible. So they just gave me regular milk and I had a constant stuffy nose and tummy aches pretty much until I went vegan! 

So I am creating a new lifestyle, a new fussy way of eating/living.

I don't have to like it, I just have to eventually accept it.

In many ways this question is very much like infertility. What would you give up even though you loved the idea of it....sigh

What would you pick?

Gigglemug

Talking about process in gallery
 

So the Exhibition opened and I attended the artist reception

(Typically, the reception that the artists attend, so people can ask questions directly of the artists)

The gallery was full, much more full than I was really mentally prepared for.

It felt like I had entered a speed dating event. I was immediately greeted with hellos and questions, and as the night wore on I had explained the process and meaning and motivation for making the work more that 25 times, but really I lost count. At one point I got a real kick out of my father commanding an audience, and doing his best to explain what I made to onlookers; he made stuff up and explained a totally different kind of art, but it made my heart flutter before I stepped in with the actual information.

It was also the first artist reception I attended without a mask, which made it quite easy to see that I had quite the gigglemug*

My work was well received, and before I left I was informed that it had sold.

The Curator was kind enough to share the news in front of my parents and in-laws, so I got a gold star from everyone that evening.

I am very thankful that my parents attended and that my MIL and FIL make a night of it too.

It is a real gift of time and validation.

*Gigglemug

“An habitually smiling face.”

Since the exhibition I have been floating in a sea of "I don't know what to dos"

I have found that tasks around, and in the home, seem to fill my mind; maybe it is my ADHD or my fear of failure or just a true and complete sense of not knowing what to do next. I have built quite an arsenal of tools and taken so many classes on new and different techniques, 

I am paralyzed with choices...

so many choices.

I have taken to my cameras, yet have not formed a project.

I have prepared to the make a couple baby gifts and have left the washed pile of onesies on my work table for weeks. I have gone to a ballet, art exhibitions, live music concerts, adventures to nearby cities, and made phone calls to friends. I have cooked and baked and gardened and cleaned and ironed and done everything all around artmaking thinking it would land me smack in the middle of a new idea...but so far no dice.

I have been taking yoga and meditation classes four to five times a week, I have delivered meals to my parents, and cookies to neighbors, had tea with a friend, watched movies and horrible TV shows...

I have tried so so many things and still I sit here wondering what do I do now!?

I have made all my doctors appointments and the appointments for The Barren, I have gotten myself a new pair of cross trainer shoes for walking in nature, but we have no plans for a trip yet. I have helped organize The Barrens closet yet mine remains like an overstuffed closet of hopes...I did give four of my dresses to a friend, as although they are beautiful they no longer fit me.

I have been the playmate for the three kitties and then find myself lost in a daze holding a fuzzy mouse toy. I am lost in a sea of unknows and quiet.

I don't mind the quiet, but after all this time it is starting to scare me a little.

When visiting with my parents yesterday, I found them older and more fragile, more forgetful, nothing dangerous, but just this side of vulnerable.

My brother is managing our parents rental unit, and I am his backup, but this morning my bestie asked if I would consider managing her moms two properties (as I live closer to them) as her mother was thinking of moving to a senior living situation, as she missed having people around her.

I am gonna talk to The Barren about that, bounce ideas off of him.

I am thankful for choices and options, as I know that comes from my privilege. 

My question is this: how do you chose which way to travel when at a crossroad?

Have you ever been unable to choose because you have so many choices?

ALOT- yep I meant it like that

TW **pregnancy talk towards the end**

I have begun taking HRT (hormone replacement therapy), to me this is another milestone in life...

I went to a second doctor to get a second opinion about an ultrasound result and was given the all clear for treatment. It was a 1 hour wait to see him, also my first male GYN doctor. He came into the room with a resident in tow also a man, and sat down, apologized for the wait and asked why I had come in. I said, get ready for an earful, and then I recounted the history with my uterus & ovaries, why I get yearly pelvic ultrasounds, recent tests and results and my concern about the most recent ultrasound results*. Once I was done, he asked if I was in gynecology, as my descriptions and knowledge was similar to his...I said, well I've had to be my own advocate for a  long time and this is the result.  He said he only had one question, and it was a simple yes or no. My assumption about the current situation was true and he agreed with the prior midwife and the result was that I did not need the procedure the ultrasound tech suggested.

After that was cleared up, I asked if he could recommend a menopause care doctor in town, to which he explained that we could take care of it there....I could get onto HRT, as my breast lump is benign, and I am early into menopause. I told him I had been reading about all the benefits of starting early into menopause and that I was tired of feeling like a zombie. I wasn't sleeping, I was having a hard time focusing, I was more and more concerned about my overall health, my libido had dropped, and although my hot flashes are mild, my night sweats for the last 10 years were getting REALLY old. 

He reassured me of the benefits, and after suggesting that I start a patch. I told him that although that was a great option, I have an allergy to adhesives and so we needed to find another mechanism for delivery. I asked my questions and voiced concerns about my endo, and fibroids and cysts; which he answered and then I left with a prescription and knowledge in what I was choosing.

I sat in the car and felt..........SEEN, HEARD, and scared but EXCITED. A new milestone.

When I picked up the drugs from the pharmacy, I asked the pharmacist what to expect and was given another pep talk and left feeling good about my choices.

My bestie and I have had conversations about HRT and when she went into the doc to have her IUD removed and to ask about HRT the doctor was far from helpful, instead delivered the phrase " it is just something we need to deal with" She is now on the hunt for a doctor that specializes in menopausal care too.

This is not something we should have to "deal with" she is miserable, I am feeling less miserable (even after a week, even if it is psychosomatic at this point) and we deserve better care.

All this after a span of two months of constant stress trying to make something for the newest exhibition that the gallery invited me for. After too many sleepless nights, failed attempts and tears I turned in four options, that I had created with the theme, knowing that I had literally tried everything I could to make the art. Thankfully, and with a kind nod from the universe, I was invited to submit a selected work. So I am in the exhibition. It is a fundraiser, but 50% of the sale goes to me, and the rest is split between the gallery and the garden.  I am quite proud that all the work manifested into a positive reality.

I have been "resting" my creative self since the submission. I had tea with some longtime friends who are painters and preparing for their solo exhibitions. I told them that I was flattened creatively from what seems like a constant sprint. They told me about the post exhibition breakdown, I was still running on my treadmill in an effort to make something else, capture that spark...grab for the stars...be everything and everyone! 

It was reassuring to hear it is real and needed. We are all feeling and looking haggard, wanting to make beautiful, meaningful work while still being everything to everyone and trying to take care of ourselves too...it is alot, a big furry, alot,  just there waiting to see what we step in next.

from Allie Brosh

Does the world seem to be spinning strangely? Is time whipping by like a top?

It is graduation time again, maybe that is why the alot appeared, time markers, reminders of how old my star child is...

Why are all of my yoga classes filled with visibly pregnant women, so so many of them and so many more that are newly pregnant women talking about how newly pregnant they are...

I thought all the dudes got vasectomies' when Roe was overturned...I guess not.

I guess it is another alot.

*my ultrasound result said that I should get an endometrial biopsy, as my endometrium is too thick for a woman my age. I got two opinions from two doctors who looked at my past ultrasound results and agreed it was not needed. Plus, with my closed cervix, I would require a D&C just to access my uterus...

Birthday day

 

I made myself a cake and took it to my parents place the night before my birthday.

The four of us shared slices and I left most of it with them, so they could continue to enjoy it for the next couple days. It was a nice quiet time, but it highlighted my parents changes in cognition and socialization. I focused on being present as best I could, but when we left I was clearly overwhelmed and overstimulated from the visit. The following day The Barren and I went to a museum and ate some ramen...then we came home. He is still fighting a cold and was tired, so I made myself birthday tacos, got in my PJs and watched Indian Matchmaker on Netflix while he played video games.

I think it has become clear that birthdays are not going to be big deals anymore. For The Barrens birthday I planned a whole week of things he loved...we went on an overnight and to his favorite breweries and places. For my birthday, it felt like he kinda got overwhelmed with work and chose to not do anything. So that was that.

Part of me wants to let it ride, another part of me felt disappointed.

If I am going to be honest, and it is my blog, so I can say that.

I felt kind of forgotten, and it didn't feel celebratory.

Lesson: no one is going to celebrate your birthday like you celebrate other people

The art exhibition ended the day before my birthday and was a personal success in many ways, there were a lot of bumps with it as well, and I learned a lot about the experimental process along the way. Four of the six pieces exhibited sold and that is a big personal record for me.

That exhibition has folded over into the next opportunity that I am currently working on...and stressing about.

I am not sleeping well, and I need cannabis gummies most nights to help me stay asleep, but I am eating clean, and exercising and taking my vitamins. I am being a responsible adult, and that seems to be taking more and more effort.

The number on the cake is not phasing me, at least not yet...

so that is a plus 😀

I made a list of things I wanted to do for my bday:

Take annual nude selfie ✔

buy myself flowers ✔

make a yummy cake ✔**

enjoy a cuppa tea and a sweet ✔

paint nails

shoot some film ✔

wear something that makes me feel good about myself ✔

laugh ✔

I have also decided to break form this year and attend a baby shower. I have not gone to any in a looooooooooonnnng time, but a darling woman who I used to nanny for is expecting and has invited me to attend, and I without much thought, said yes. I was shocked at how easy it was to plan to go. I guess I am growing in many ways.

So here is to 53, a total shock, a real leap of growth, a change from the norm...

it was my birthday Tuesday and I survived. 

**cake recipe**

Real estate

 

© The Barreness
A crowd gathered around my work on display

There is nothing to complain about...

Isn't amazing how the one bad thing can ruin the month of good things. It frustrates me, as it gets too much real estate in my mind and then I have to spend so much energy trying to not let it have so much space. It is exhausting.

My work has received so many kind, generous words. Unprompted from strangers and friends alike. 

Many of which as surprised by my capabilities, or creativity.

I spend three hours answering questions, and repeating information to visitors during the artists reception. I wore a mask and only got guff from one visitor, to which I responded that I wanted to remain healthy after the evening was over (it was a man, and a figure model at that...)

I was hoarse and overstimulated when the night was over, I spent the following day quiet and writing thank you notes to all who came out the night before.

A success in many ways. My art sold, I was the first sale of the show, and remain to the most sold artist in the exhibition so far. I am hoping that a review will be made my the local paper...I have learned how to make reels of my images on social media. I have been publishing new bits about the work online on a regular basis to keep people engaged and interested in the work...I am soaring with humble pride from months of focused work and it landing well. 

The night of the artists reception, I was chatting with a well known painter, and she looked at me in my shimmer and pride and said: " well, how are you going to top this?!" It landed like a javelin, I feared that question. I feared I would have to face my next step instead of enjoying where I had landed....I just smiled and said, I am brainstorming that now.

Two days later I submitted the work to a magazine for hopeful publication, a hope to continue to move the images forward...and this morning (weeks later) I was awoken to a little ping of an incoming email. It was a rejection notice. I stayed in bed longer than normal, feeling the weight of my failure.

I should be happy...and in many ways I am. I am still very proud of the work and hopeful it will grant me more opportunities but in many ways I can't sit and enjoy the moment; I need to think of new things to do, places to email, exhibitions to apply to...it is a frantic pace. I often feel as though, I am in the slow lane of the freeway trying to not get hit by passing cars.

It is exhausting.

So it came as no surprise, that I caught The Barrens cold on the return from his business trip. I nursed him for a week, thinking I was safer than safe...I wiped every surface, wouldn't let him in the kitchen, washed all the blankets...but still I got it. I managed to keep it at bay until after receiving my infusion...and then I crashed. My first cold in over three years! The Barren was stressed from his cold and travel, so I needed to fend for myself and I did my best to not be grumpy or ask for anything while I nursed myself back. Last night was the first real night back to a more normal sense of things...and I am back into the rapids, the fast lane on the freeway, the craziness that is normal for me.

So I am like a surfer, riding waves of joy and sadness. 

Thankful in many ways for it all

Self-awareness

    Joan Brown Painting

 I took my first solo trip in well over a decade to spend two days with my bestie.

I left The Barren behind to care for the cats, himself and the house while I flew away to have a girls weekend. It wasn't the girls weekend of movie types, there was no spa, or wine country or even a road trip. It was a cheap easy airplane ticket purchased back in September, on a whim with hopes of having some time with a friend.

It worked. My bestie put me up in her newly built studio in the backyard. I arrived between "bomb cyclone" storms hammering my state. I am a nervous flyer, so the idea of flying in storms was not ideal, but I love my bestie and I realllllllllly wanted to girl time, some me time. I lucked out, and the rain and wind had stopped for an hour while I flew there and an hour while I flew home. 

We spent the time walking the dog, chatting and squeezed in one museum visit 💓

There was also shuttling her hubby and kiddo to practices and grocery shopping.

Most of our time was chatting; bemoaning marriage challenges and life roadblocks. There is something unique and beautiful about a friend that knows you, and has known you for decades.  They spot when you are bull-shiting yourself, and when you are downplaying something. We both are vacillating with extreme creative joy and feelings of self doubt. Struggling to find time to sit with ourselves and accepting our new bodies as we walk this new menopause path. She is facing an empty nest this summer and how dramatically that will change her life and how much of her current life has been taken over with others schedules and expectations.

It was a gift to listen to her and her concerns for her kid and pre-college. I found myself in a rare position, I was able to offer help with things that are just too much to add to her plate. When I shared this with The Barren I was greeted with a huge smile and I think the two of us felt empowered in a small way. A way that would really matter to this kiddo.

When she was pregnant with this human, I was trying and failing to stay pregnant. In many ways her child is another time marker, both The Barren and I adore this human and we are overjoyed to be a person they call with questions and someone they can count on. My bestie and I were the same age her kiddo is when we first met...and that magic is not overlooked.

We walked the dog in large open parks in the mist and drizzle, around neighborhoods and chatted, never finding a moment without a topic to muse about. We shared meals and caffeine and window shopped in places near her home, but she never had time to explore. It was an amazing two days, we were both left exhausted and partially healed from the time we had lost over the last years in isolation. It was bitter sweet to say goodbye in the pre-dawn airport drop-off. 

We hope to meet somewhere between our two homes in the next 6months or so...life is riding us both hard these days and so it is fun to place a marker for another weekend out into the universe. (we chat almost daily via text, but spending time together is hard to come by)

When I lined up to board the plane, I got a weird feeling, I couldn't really place it but something was strange. Something was off...I brushed it aside and got my seat. It was announced that it was a full plane, so I moved from the aisle to the middle seat in my row. Someone was already at the window, when another person asked if the aisle seat was taken I said "nope, it is all yours".

After seeing everyone file onto the plane, and hear that it was full I realized what was off...

the WHOLE plane, aside from me and a disabled couple at the front row, was students.

I found myself sitting between two people that were clearly in college, and I sat there with nothing in my hands but my own hands. No phone, no tablet, no book or magazine...no distraction just my own hand to hold. My mind started to do math, I could be either of these peoples mother, I was old enough and they were the right age. I was flying in a live action reminder of an alternative timeline. The plane cabin was silent, everyone was plugged into something...meanwhile, I pretended to sleep, I pretended to make mental notes, mostly I was trying to distract myself for the hour long flight home and not collapse into a puddle of tears thinking about all the what-ifs.... Yep, it is an hour long flight, what a luxury. 

It was a long weekend, The Barren picked me up and we got breakfast. As we were sipping tea while it drizzled he asked me what my favorite part of the trip was, did something create a core memory?

 I started to laugh and told him that it was AMAZING to have a hot flash with my bestie.

We were walking in the museum gallery, both of us doing our own looking. Then I realized I was warm, then warmer, then dripping sweat, each stage removing more and more layers of clothing. Meanwhile my bestie was experiencing a similar thing on the opposite side of the room. We met on a viewing bench, to both dig into our purses to grab a hair tie and pull our hair off our necks. giggling about how we were carrying our coats in our arms and it looked like we were dragging blankets from gallery to gallery. That, that will stay with me forever....not feeling alone, laughing and feeling vulnerable together, we understood each other perfectly without saying a word.

Krampus

 

In order to make my latest adventure to the ER more manageable and less scary...I thought about what this flare might have looked like, what kind of personality did it have and I came up with this.

Big Flamboyance

I was up at 1:30am awoken with stomach tightening, that turned into a 12 hour saga of regular contractions and wave of nausea making all fuel leave my body, and leave me unable to form thoughts, drink water or even cry. That alone wouldn't get me to the ER, it was the pain in my lower abdomen that got me there fearing it was my appendix. Thinking the worse of the worst scenarios. 

Well, lucky for me, there was a lonnnnnnnnng wait to get a room in the ER. Our local hospital only allows the patients in the ER waiting room, having their companions wait in a separate section of the hospital until a room is assigned. The Barren was near but not with me while we waited for 3 hours to get a room. During that time, the ER filled with sick babies, lots of sick babies that sounded like seals barking. People having seizures and others puddled moaning in the chairs. I meanwhile was seating curled into a in fetal ball trying to not think about how much I was feeling past trauma, how I just wanted to go home, hold The Barren's hand and how silly I felt being there. (reduce yourself to make space for others much?) 

The Barren meanwhile was in the perfect spot to see all the new parents leaving the hospital with their babies in tow. So he was having just as much fun.

I think it was hour two, when I remembered I was just learning a healing mantra in my meditation class. I started trying to remember the words, I forgot some, then remembered them, then jostled the order, but I figured if I got any of them wrong it was still a good thing...I was focusing my breathing and mind on something that wasn't my pain, fear, or embarrassment.

Om tare tuttare ture mama ayru punye janana pushtim kuru soha

White Tara healing mantra

*****

At the three hour mark, I was called into a room and The Barren was ushered in separately. I met the doctor for a hot second, he determined that based off my blood and urine, it was not a blockage, rip or my appendix. I was given a cup of water to see if I could drink water again, anti-nausea drugs and IV fluids. The nurse, who was a totally cool dude with pink on the ends of his long hair, said that he believed what I was experiencing was peristalsis and because I was slightly dehydrated, I most likely could feel it more than normal. Then he unloaded some other cool facts like, the smell and taste I experience when the line is flushed before I get my infusions is actually genetic, and not everyone has that ability, and it is actually the blood flowing through my olfactory...anyways it was pretty cool. I got a call from my GI doctor right after the IV of fluids was placed and he called in a prescription for more anti nausea medication. (I was super thankful he was a rockstar like that).....this new diagnosis has a steep learning curve, and what I was experiencing was a flare. There is really no known causes for them, and it takes practice to learn the cues of one coming. So ideally I'll be fortified knowing mine tend to last for 24 hours and then subside, but can hurt like a mother when they are here.

When the IV was done, I felt re-booted and went home to shower and eat two tablespoons of sweet potato and go to bed. 

As I was eating said sweet potato, I asked what the date was and it was the 5th! The 5th of December....and I realized just then, that I had been battling the KRAMPUS....and I won.

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!

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

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

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

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...

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.

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.

Myopic

 

I made the mistake of leaving this at the thrift store.

I thrift. I have been a thrift store shopper since High School. 

One of my recent goals is to not buy new clothes, but to thrift as much as I can. 

Fast Fashion/ Clothing is a large polluter so this seemed like an easy life shift.

I thrift shop for The Barren too, as he is in between sizes now and it is cheaper than buying new clothes.

He is cool enough about it.

I was going through the racks and came on this, I even stopped and took a photo of it, 

then put it back on the rack and continued my myopic search of particular sizes...

When I got home I did a quick search and then put my palm to head and just about cried.

this $8 shirt can get up to $200 on the used market!

I am finding that my sights are set to a myopic level as of late.

I am having a hard time seeing past the present, and although my meditation teacher would be glad to hear that, it is not really a good way to view a career or a way to set long term goals.

I am trying to set goals again, as I tend to respond well to them.

I have been rejected from EVERYTHING I have applied to this year...

the streak remains, and the most recent rejection hit hard...harder than I thought it would.

I have enrolled in remote classes to learn new techniques/processes 

and take free courses when and where I can.

I have signed up for free courses offered to artists to refine and update skills.

 My last two pursuits turned out to be much like a timeshare talk...

I lost a couple hours of time and was fed a sales pitch with pressure to buy into a program.

I was more disappointed in myself for not seeing it sooner:

The first was to "teach" you how to successfully apply to residencies. Artists residencies are spaces offered to make work uninterrupted, all require detailed applications and essays. 

The course was supposed to help you refine your documents and increase your chances of acceptance. 

The presenter, spoke slowly for an hour plus on how great all her residences were and what kind of perks, amenities and processes were involved. Some she paid large sums of money to attend and others were juried and she paid less for. 

The people attending were all rejected for all of the ones they had applied to and the lecturers words of advice was: keep applying, keep paying the application fees, and increase the number you are applying to.

I was beyond frustrated and I don't think I was the only one who felt cheated of the time.

The "low cost" ones recommended were a minimum of 3K at reduced rates, plus travel and art supply costs. 

Frustrated, I finally asked:

" being an artist with an inconsistent income, what advice do you have to applying as often as you are recommending?"

The response was: "don't apply to as many"

SIGH

My second attempt was an one hour talk about how to land more shows.

 An artist coach was leading the conversation. Pre-prepared lecture notes were sent ahead of the talk; and once logged in, I was greeted with a pre-recorded talk that ended up being a sales pitch

(see the actual screen shots above)

SIGH

I have had some success, as I took a couple photo classes via zoom and have had fun with the new techniques...but boy oh boy...the admin stuff have been total flops!

It has left me feeling quite defeated and sorry for myself.

Here I am trying to pull myself up from my bootstraps and I just feel fed to the lions of consumerism.

Mind you, I am trying to play in the deep end of the pool, and I am trying to update skills so that I am more consumable...

I was also supposed to be in an academic book about infertility, two of my artworks were selected, this has been in the works for over a year...and the authors are in the home stretch...and sent out forms from the publisher for all the contributors to sign. I read them over, and then had The Barren read them, and then a friend read them because....in them the publisher wanted all rights to the work for all eternity!

So I had to send a letter saying I needed to be removed from the upcoming publication, as I was not ready to hand over all my rights.

(it felt really horrible, especially after Roe v Wade)

My bestie was in town for a couple days, and it was nice to have tea with her before she returned home. We talked about everything including our aging parents. I told her how I feel pushed away by mine. My daily calls are now twice a week and they only talk about my brother when I call. I offer time and cooking and I am turned down. I told her how I've changed my tone, theme, and frequency of conversations...all in an effort to connect more, but nothing seems to work. So I am confused and hurt.

She understood and we both know that the moment anything goes amuck, we both just jump into gear to fix things...zero hesitation. In the meantime, her mother eats food that is mis-delivered to her home, and my parents have long talks with phone solicitors and send group texts of puppy photos.

So this little engine is feeling pretty low, and lost and sad.

But I am trying to see past that...ideally my myopic vision will turn into something else soon.

Until then, I'll just keep my eyes on the railroad line.

Gone

 Let me start with this....

FUUUUUUUUUUUUCCCCCCCCCCCCCKKKKKKK

I had a CT scan scheduled for 9am on Friday morning, I had drunk a container of barium the night before and was staying away from social media to try and calm my growing list of fears, as I drank the second container.

I had been in my in doctors office on Thursday morning with The Barren 

because I was on the floor, folded over in pain. 

I had STAT bloodwork done, a STAT ultrasound done 

because they didn't know what was causing the pain. 

Things I feared were causing the pain

impending DEATH

ectopic pregnancy (even though I haven't bled since December of 2020)

infertility trauma has trained me well

bleeding ulcer

ruptured appendix

At the hospital, I was trying to calm myself while I waited for CT tech and I heard the receptionist say

 " did you hear? they overturned Roe V Wade"

(she mentioned it quite casually, like, hey I brought a sandwich from home for lunch today)

My mind begun to spin, I went totally numb.

As I laid on the CT bed, and the nurse tried MULTIPLE times to feed an IV into my arm I thought, what the hell is happening right now?!

The scan went on and I was syrup sweet to everyone because they have all lived through years of trauma treating stupid non mask wearing people.

I got dressed, took a selfie in the bathroom and made it back to my car to collapse into a puddle of tears.

I was too scared to move really...I felt lost under water and unable to see where the bubbles were going.

I texted The Barren that the test was done, and I was headed home.

There was road work and delays and as I sat in waiting lines, I screamed.

Screamed deep, guttural, primal screams.

I wanted the men in the work tractors outside my car to hear my rage

I wanted birds to fly off course

I wanted to be free 

I was terrified for the women suddenly stuck in line, suddenly without options suddenly trapped. I screamed in hopes to blast open walls, I screamed and screamed and screamed to empty my lungs of all air, I screamed until I thought I would pass out. 

Then the line of cars began to move and I sat silent in my car the remainder of the trip  like I had pulled all the air out of the space... until parking at home.

I had lost my voice; literally and physically.

My arm hurt, my throat hurt, I was scared to eat, I was scared to move.

I drank a glass of water and then I don't remember what I did....

I had visions of people shooting the justices (there is a new open carry law) in restaurants out of grief,  because their partners died unable to get an abortion for their ectopic pregnancy.

I went DARK DARK DARK and that scared me.

I got text messages from a couple friends, I sent a couple text messages telling friends I loved them.

I skipped out on a night out watching The Barren play music, and instead stayed home and cried.

The result of this has left the men in my life confused and feeling useless. I love them but I don't think they understand the depth this radiates in my sense of self.

I live in a state that has protected the right to abortions and is aiming to add it to our constitution:

"On Friday, Mr. Newsom signed a bill to shield California abortion providers from liability or prosecution related to out-of-state bans on abortions. He also announced an agreement with Gov. Kate Brown of Oregon and Gov. Jay Inslee of Washington to establish a West Coast abortion firewall that would protect providers and patients from the legal reach of other states.

Pending bills would authorize experienced nurse practitioners to perform first-trimester abortions without a physician’s supervision and create a state-administered fund to help underwrite travel expenses for the many women from abortion-ban states expected to come to California for an abortion."

THIS DOES NOT CHANGE MY RAGE

I made donations to abortion aid funds on Saturday and plan to sell some recent photographs as limited editions to raise more funds for Abortion help for people nationwide.

I did a series of self-portraits that I posted on social media and disturbed some friends with their rawness, I was not afraid to be raw, I feel stripped of something...it is a feeling that I can not really put words around, although I am trying here.

I seem to be explaining myself to a lot of men in my life, and hand holding to help them understand why I am acting the way I am. What I am doing is frustrating and I am trying to keep myself from lashing out at the wrong people for the right reasons. 

Has my place in society and my worth changed or shifted now...I know it has for many others over these years and it is painfully punctuated for women of color and trans people. 

What or how are you coping? The WHOLE world sees us and how super fucked up this country is.

I can't form any more thoughts right now...

I wish you strength for your conversations and peace for your quiet moments