I am wondering which way is up?

my garden is producing so many cucumbers

I have earmarked this week as a week that I stay put and try and make something! I miss making my work; thinking and trying to make the colors work or the concept appear as I feel it. it has been bumpy so far, focused time yesterday maxed-out at about 20 minutes, before calls, and emails and my brain just collapsed.

As of late, my life has been my parents...all engrossing, notes on the phone and scraps of paper. I drive into town at least once a week to deliver a couple prepared meals and make sure appointments are known and addresses are marked down. Remind them of what is required of them and how they should react to particular situations. I attend all the doctors appointments now, with exceptions for mental health care appointments and now my fathers in-home physical therapy.

I am the decoder ring. My parents don't absorb information and so I attend and answer questions that bubble up after we leave. Sometimes it was who did we just see and why?

My father finally was finally diagnosed with NPH , which in short, is extra fluid on the brain that doesn't resolve and leaves his brain compressed from the internal pressure. We saw a brain surgeon and she mentioned that he indeed has it and it appears it has been in place since his fall in 2024. She said that a valve could be placed in his brain to drain the excess fluid. She described the process and when she was done, my father said " you aren't gonna drill a hole into my skull!"  She said that he didn't have to have the surgery, but call her if he changes his mind. This is not a fatal disease, just a functional one. I suspect it was there before his fall but ignored or downplayed by his neurologist. It doesn't matter now how long he has had it, we are all going to have to live with it because he refuses to have surgery for it. Frankly, I am not sure he would be the best candidate for the brain surgery anyways...he would be required to do a lot of PT afterwards to recover from it and I don't think he would commit to it. So he will continue to be confuses, unsteady and experience funtional issues.

I made a promise to myself recently (in the last three weeks) that I would like to try and have a relationship with my parents and not spend my time fighting, bargaining and being run over. 

A friend of a friend mentioned this option with their children being picky eaters...they said, I could spend my time with then yelling and making them miserable or I could let it go and have a relationship with them. Most things work themselves out...I took this idea to heart when I was having a panic attack thinking of all the things I was trying to get them to do for their own good and falling flat and being run over, and snapped at. 

So now my voices' cadence is cheery, I don't debate, I don't engage with the bait to fight about something. I simply say "okay" and put down the conflict that is building.

My mother( the better of the two)  has become resistant and more forgetful, but it is hard to know if it is from her lack of sleep or lack of attention to what is being said to her. She seems to retain less and less and is procrastinating more and more. She cries on almost every phone call we have and says she needs help and then when it is offered, she snaps and says that we have overstepped and she doesn't want it. This usually means that she will reflect about it and a week or more later say she needs that help again and we will try again....except I think this time my mom might have burnt a bridge with my brother. Only time will tell....

So while all this swirls in my brain, I am trying to put it down and think about my studio practice. The Barren took the week off work and said he wanted to support me in my focused time: he said he would make me lunch and do laundry etc...so I would be less distracted with responsibilities; but has so far, he has not been home for most of the day. He leaves to play music with his friend late morning and comes back around 8pm, as this was his usual "music camp" week* (a week he takes off annually to attend music workshops etc...with his bandmate) I am glad he is relaxing and taking time to feed his creative vein. 

All this time alone is like still air, I am left to also make food and clean up and reflect on how far away I am from creating something. 

My heart is broken...I feel so afloat. I am used up in so many ways...

I try and find things that would lead me back to the path of thinking about my work: doing yoga early in the morning to kick start my brain, watering my garden to clear my head. Clearing clutter in the workspace....making food and writing down what might pop into my head...but I am having a really hard time not feeling so very dark. I am exhausted and often feel like I am dragging my body around from place to place. I want to sleep for days, but I can't justify it in my mind, I would waste all those hours of potential creative making. I am at a loss....and when things get that quiet, my parents creep back into my thoughts. Long lists of things I should do, need to do, need to call....it is everywhere.

I had a nightmare the other night that I was standing in traffic at a very busy intersection, and when I saw a muscle car speeding towards me I couldn't move. I froze in place. I felt the car wiz past me, I felt the air vibrated past me and I got knocked by the side mirror...but it also felt like it had hit me and I traveled through the car, feet cemented into place. I stood there and wondered if I was still alive. That is when I decided it was time to wake up and get the day to begin. 

Fatigue and the new year

Stream of conscience writing-and reflecting

I am here, still here.

Thankfully less frightened than my last post.

******below written at the end of last year******

I gave my artist talk and three people came; well three besides my DH and the social media person that was recording it for the guild.

There were marches all over the city that day, so it was a tough day to get around. The three who came were a guy I went to high school with and his daughter and a friend who were interested in art. It was a nice audience and made for an intimate experience for his daughter to learn about the art making practice.

I had too much chocolate and carbonated water, but it is better to be over prepared than under.

My hubby recorded the talk, as it was requested.

So far 10 people have watched it, and two told me they had a hard time hearing what I was saying.

So it was a learning lesson and an act of presence. 

I did enjoy the act, but the build up was A LOT.

Afterwards we went to a middle eastern restaurant,  and quickly realized we were a minority, as the place filled with protesters and we were watched quite closely the whole time. I think I asked hubby a couple times if food was on my face as I was getting so many stares.

It was tough, and heartbreaking and only a few days after the kidnapping and so my Jewishness was obvious to many.

I returned home to focus on my next task, make new work for my annual submission  for the next big event. No pressure, no stress....no terror.

Hubby got a cold, and I had had my infusion coming up so I slept on the couch for a couple nights so I would not get breathed on all night. I added it to my internal dialogue of "suffering artist" narrative in my mind and after several months of struggling, and working and crying and wanting to burn the whole place down...I created some new work.

It was the most challenging experience to date.

I submitted work a day before the deadline and walked away knowing that I had tried everything in my power and wheelhouse to create something new, unique and that I loved.

The Barren planned an anniversary getaway for us...and it was 10000000% needed and a complete surprise. We celebrated 21 years married and 31 together this year. We went to the desert and a very nice hotel...there was a soaking tub on our private patio where we took turns soaking by a fire, we got a massage and had a fancy dinner out. Mostly we got quiet, a reprieve from our own thoughts and reality.

*****

After the return from the desert, I was faced with another wall of stress...

which had me dealing with the logistics of switching pharmacies that 

 supply my infusion medicine. I spent a month trying to get one office to submit a signed document. The delay was so prolonged, it delayed my medicine for an additional 10 days, which doesn't sound like a lot until you factor in that I get this medicine monthly. I ended up going to the office personally, twice with a copy of the document, the line highlighted in hopes to get it resolved. The second trip was the keystone, and I broke down into a waterfall of tears when I had the signed/faxed document in my hands. 10 days after my medicine was due, I got a needle in my arm.

I was so absolutely spent from the process, I had broken down multiple times with people on the phone. I lost my shit, I apologized for it and then grabbed my bootstraps and took care of business.

I sat in disbelief for a couple days afterwards, not really saying anything and just staring into space.

The new year opened with a rescheduled MRI after The Barren had taken the day off to support me, and showing up at 7am to have it. Someone changed he date and location and neglected to inform me. I showed the front desk person the confirmation, but told them I understood that didn't change anything, so please just tell me where and when I am supposed to show up fasted and ready to drink insane amounts of contrast fluid. I go Tuesday now...3 weeks later.

The December art show was well attended and my work sold in the first two hours of the opening. Another of the works I had submitted for the show was selected for a separate exhibition which is open now. That was a lovely happy response to all the stress and sorrow of the prior month.

Now I am in a holding pattern again, trying to refill my energy reserves and start making work again. In the meantime, life has laughed at me over and over, delivering tasty tidbits of stress and worry. 

I start to wonder, is this what my 50's will be,? 

I know the world is an absolutely chaotic place and there is so much horrible outside my door; it sometimes feels like I am being a glutton for punishment when I wake up everyday...greeting the day and thinking of all the best for the time ahead....and even if I am beaten down over and over again, I still greet the next day with hope for something better. Does this qualify as insanity?

A woman I have meditated with for these past pandemic years just found out that she has breast cancer...and when she told me, I was numb. This woman is a peer, she adopted her kids, she is an artist and she had an ultrasound because she was told she had dense breasts and they found over half her breast had cancer growths in it. I was flattened by the similarities.

 I told her that I have been on infusion therapy for the last year and when I started I didn't want to be seen as a sick person. So, in an effort to not say "you are in my thoughts" I told her that I will focus on her making all the best choices for herself, and being given many options and strength to do what aligns best for her goals. I rethought about that encounter many times over, and feared that I had diminished her experience. 

I am finding myself at a loss for many of life's most difficult moments.

What is wrong with me?

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?

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...

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!

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.

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

52 like a deck of cards

 

How my birthday weekend started.

I thought I had simply overate, but my stomach thought differently and proceeded to make the next 24hours living hell for me. It was when I started to vomit blood that The Barren started panicking.

(it was not a lot of blood according to the doctor, so the level of terror The Barren displayed was misdirected and I was not bleeding out)

He started screaming that we needed to go to the ER, I meanwhile was hunched over a toilet discarding whatever was below my toenails was unable to stand. 
YET I was still convinced I didn't need the ER, anything but a DOCTOR or an emergency room or any medical person for that matter... but we got to the ER and as soon as I walked into the door, I felt fine.

The Barren was shocked, I in turn was not. I was terrified of what lay before me and I think went into total trauma mode. We got in quick and of course the nurses were amazing, the doctor was confused why I was asking so many questions and asked if I was in the medical field...and I told him that I was familiar with pain, and emergency rooms and I was someone with stage 4 endo.

He offered pain meds and I refused. Then I sat there for a moment with the nurse and said, I should give my body the option to be comfortable, and not just sit with discomfort.*

* I later reflected on this concept of being uncomfortable and sitting with it and dismissing aides to medically make things better. I felt like my mother taught me to "buck up" and manage it alone, in solitude and you'll get past it, eventually. I am glad I recognized this while in the ER and able to make those elements dissipate.

So I got some light drug to mostly numb my stomach and all my blood tests were good so it was diagnosed as acute gastritis.

No spicy, oily food. No alcohol or caffeine.

Happy birthday!

I am on stomach drugs for two weeks and a bland diet.

The next day I was back to normal actives and when my birthday rolled around a couple days later I was my normal emotional self. I made myself some birthday cupcakes, and headed to the family home. I had loaded up my camera and I shot photos of my immediate family.

It was a relaxing quiet time, simple food and I had a bite of birthday cupcake.

okay, I ate a whole cupcake

Vanilla cake, lemon curd filling and topping.

The Barren had taken time off work so we could celebrate my birthday together....

but he neglected to make any plans, so after he berated himself for being bad at birthdays...I told him that we could freeform the days off.

I also had another epiphany:

When you are younger, you have elaborate birthday parties with friends and big Ta-dos, and as you age those sorts of moments become harder and harder. All we are trying to do is capture that same level of joy from childhood...recently when I thought about my birthday I cry. I realized that for me, it highlights my loneliness and lack of social circle. So birthdays have to become something else for me.

So I found a botanical garden, and took my cameras and photos and walked near trees and forgot all about my sadness, and about being lonely. I forgot about the ER and the pain, I just was away from it all with The Barren.

When the days off had past, I got a text from my bestie that she was coming into town for a hot 36hrs to pick up a HUGE plant from her mother and then was going back home. Then asked if I had an hour or so to hang out...I of course said yes and with The Barren in tow we met for a meal and a chat and it ended up being longer than an hour and it was like my birthday extended for another day. We took photos and she jumped back into her car and drove home 6+ hours away.

When I was with bestie, she mentioned that 52 was like a deck of cards....

I thought about that, mostly that I hadn't thought about a deck of cards being 52, but then how that relates to me. 52 options, some similar to others but each unique. 

I guess the theme of my newest circle around the sun is reframing.

I am reframing how I relate to myself, the world around me and others in my life. I mean what birthday would be complete without a little existential meandering, right?!

Which card will I pull for this week?

52 cards, 52 weeks in a year...

This new year

 It has been a little bit since I've checked in here, 

Well, I check every couple of days and read your blogs, 

but it has been a little bit since I have sat down to write something.

So hello and happy new year

I never got our holiday cards made, and I even missed the chance to make them New Year cards, and now they can not be Valentine cards...so I need to let that rope loose.

I was sitting in my bathroom, after sneezing repeatedly from my nasal swipe home test, looking at this tiny piece of plastic....wondering what will the answer be?!

Anyone else been triggered by this act of home testing?

I was surprised at how quickly this became a flashback to days of yore.

I sat there for 15 minutes waiting, wondering and hoping for a negative so I could visit a friend who had tested that same morning and was also negative.

This is the new weekly normal it seems,

We test ourselves before visiting and then can hug and laugh and share a picnic.

I have been struggling to find a new normal for myself. 

A new studio practice, a new routine, a new self. It has come to my attention, that home chores are now a predominate part of my week. I sit in my workspace daily: often distracted/interrupted with making meals, doing laundry, being a cat entertainer and my anxiety from not making new artwork.

So I have taken to visiting with a friend weekly. I take my camera and shoot film and laugh and try and find a new moment of clarity and less guilt.

The Barren is home during this time, working and stressing and I am off playing with a friend.

It has me feeling conflicted, but The Barren assures me that he wants me to find this time to be creative.

I come home from these visits and either bring home food or immediately hit the ground running to make a meal when I walk in the door, as I am wanting to counterbalance these feelings...

I don't like that I feel this way...

I don't make much money anymore and The Barren is carrying the load. Once again he assures me that he wants me to have space and time to make art, as he feels that is my true calling.

I adore him more than words can describe for this vote of confidence.

I sold almost nothing last year (I just did our taxes) I made $148 from the sale of 3 packs of cards and two prints. So I am clearly not the next breadwinner in this house.

So in exchange I do all the housework, food shopping, laundry, dishes, cooking and dishes.

While still trying to make art, and check into my remote job (it is pretty quiet this time of year)

so that is what I have been doing.

The Barren turns 50 next week, he is feeling low and super stressed. (compounding my guilt)

I booked us an overnight at a hotel in a town about two hours from here. It is supposed to have ocean views and a balcony to watch said ocean.

An overnight means the cats can be left alone without needing a check-in from a third person.

I also sent an email out to everyone I could think of to send birthday wishes so I could put them into one book for him and he could see how special he is to so many people.

They are trickling in slowly, and that has raised my anxiety a little...but I am trying to let it swing in the wind. He will have wishes from a few for sure and I have a crafting project to make.

His best buddy has three concerts for them to attend in the next week. The Barren has been pretty isolated and hunkered down here at home in preparation (really it is social anxiety, and Covid fears)

for the last month! So that has added to his feelings I am sure...

But tomorrow he starts to break free and attend events outside the house.

We have a stack of home tests, and are crazy careful and cautious about masking around people.

So far, it has served us well, as neither of us has gotten the virus.

WHICH IS THE GOAL STILL

On another front:

I reached a milestone, well a touchstone? or a life marker?

I have not had a period in over a year now! 

I am in a whole new land.

I had a follow-up ultrasound to make sure that the polyp, that the GYN gave me while trying to take an endocervical pap was gone, and thankfully it was. All seemed calm on the cervical/uterine front ⭐

So here I am, avoiding going back to the gyn to try again for that same pap.

This new year has been trying and my gosh we are only just finishing up the second month.

I am feeling lonely, but as mentioned I continue to make real efforts to find a social feature outside my home once a week...and I am still doing online art discussion class, and yoga practice (at home) and meditation group (4 people in a HUGE multipurpose room with masks) but the overall feeling is still very isolated and alone. Like a thirst that is unable to be quenched.

Is anyone else feeling this too?

Okay, I am babbling again.

Happy newish year...I'll be back sooner to reflect on some thing or another.

My Cervix

****candid- real talk about exams****

 It is that time of year again...check under the hood and see how things are.

Like years prior I tried to make all the appointments in a week, so I could get them all done and then be done for a year...but that circles thing is still haunting me. I had my general checkup/in and to say that my primary wasn't happy with my answer to her : Are you happy? question is kind of an understatement. What did she really expect...I mean I think all of us have been run the fuck over these last two years. My response of "mediocre" was not received well and she offered no other options other than noting that she wanted me to take care of myself?! WTF

I was cleared and told that my cervix was too closed to do a proper pap and that I needed to have ANOTHER one done by the GYN department....as well as a stack of other orders for mammos and ultrasounds and follow-up bloodwork.

Meanwhile the gastro doctor needed me to REPEAT all the samples I had done two months ago because the lab didn't culture them all.

I went for my pap redo yesterday and aside from a single extremely pregnant woman in the waiting room, the other ladies in waiting all seemed unfazed and not pregnant.

I decided to have the NP that did my endo biopsy do this retry and she tried...and then asked for more things to try and do it. I was laying there flayed open with a speculum in place for longer that most of us would like, she proclaimed that more things were needed and rang for another woman in the office to fetch other devices to try and open my cervix enough to get cervical cells....after what felt like an entire construction site worth of devices she said she was not able to open the cervix enough.

She prescribed an estrogen suppository for me to take for a couple months in hope that would soften my cervix enough to take a proper pap. So she wants to try again in February. 

I felt defeated, and disappointed and after I got dressed, it also felt like I had been punched in my vagina. I have had some mild cramping too...but I am guessing that was from the clamp they put on my cervix while trying to get a cervical dilatator into me.

Today was my pelvic ultrasound...it was obvious when the ultrasound tech started to place the probe that there was a tissue tear in my vaginal wall from yesterday and then she said she could see where the NP tried to get into my cervix...in fact she said to expect spotting in the next couple of days as things looked poked. She told me that my ovaries are starting to get smaller too. I was thankful for the heads up and the repeated checking-in on me to see if I was alright and not uncomfortable. 

I left the appointment and sat in my car for a little cry, my vulva throbbing and aching.

It was a lot of things to process.

I am cooking tonight, feeling like I need to control something today...anything for that matter.

I was suppose to do a family photo shoot, but the family postponed and I am kind of grateful. It means I have some time to work through some feelings about this whole couple of days. I think I am going to soak in a tub tonight too, ideally it will help start some healing.

I know that a lot of my feelings are surfacing from my IF days, when I had most of the people from my county in my vagina, looking around and giving opinions. I can put on a mask, swallow pain, discomfort and make little jokes to deflect real feelings...but I am not so okay with doing that anymore. I am tired. I am tired of feeling like I am broken or unwell. This entrance into menopause is like taking a dive into a dark deep pool and no one tells you what the water temp is, what is in the pool or if you will sink or swim....because each of us sees that pool differently and so why tell you anything.

It has been a rough start to the week, I still have a breast ultrasound, and a follow-up with the gastro doc (who will be wondering why I am not sicker)

I am not wanting to complain, but really wonder if this is what to expect from here on out. Does anyone else have this experience? closed cervix with the onset of menopause, having to do paps over and over? How are you handling the beginnings of menopause, or perimenopause? 

Any advice or tips would be of great enlightenment.

Breathe from your chest

 I did a grown up thing and got my colonoscopy done. It was alright and I made sure to tell EVERYONE about my stage 4 endo and where it was attached to my bowel. 

The doctor took biopsies and removed a couple polyps and said I can't take any NSAID's for two weeks. I've only had one optical migraine and I breathed my way through it.

I am thrilled to be on this side of the exam. 

It was taking up soooooooooo much space in my head and conscience. 

When checking in the nurse noticed I was quiet and still and she asked if it was my first time, after saying yes...she asked what I was most worried about...and I told her I had white coat, she asked from what...and I told her a decade of infertility. 

HER WHOLE BODY LANGUAGE changed and she was soothing and said she was so very sorry and placed my IV on the first try...and it didn't even bruise!!

When it was my turn, the doctor was nice, the nurse that gave me the drugs was kind and I asked if she would hold my hand, and she did until she had to administer the drugs...I was in a twilight sleep and was told to breathe from my chest, it made me think of yoga and I did as suggested. I have spots of memories of the procedure and then I was done. I went back to the bay, was helped to get dressed, walked out to The Barren and taken home, where the Barren had made me some vegan scrambled egg and rice and a glass of water.

Then I went to bed to sleep off the drugs and fart.

They found things in my colon. Fucking nothing surprises me anymore. It was clarified that nothing was cancer and no endo had penetrated the colon wall but, there is a possible immune disease. They won't really know for sure until I do some blood work and stool samples...whatever.

I seriously don't have enough energy to be concerned or worried about stuff. This last year and a half have stripped me of so much...clearly this is another thing.

I go in for another in 7 years or something like that. In the meantime, I have a new doctor trying to figure out my unique body.

On the flip side, we finally brought the cats home. 

We spent a week with them before telling anyone we brought them home. It made a good difference. They have all their shots, are neutered and spayed and are learning how to be housecats. 

Here are the three that now live with us:

Zahra- the kitty that started it all 💗

She is about a year old

Umber- this boy loves his mommy and naps

12weeks old

Kugel- the littlest of the litter and Parkour expert 

12 weeks old

The energy is totally different and as much as they are getting used to being housecats, we are re-learning what it is like to have young cats again.

It has been well over a decade since that was the case.

They change everyday, and hide less and are curious about more.

Soon we hope one will want to be a lap cat, nap buddy, and snuggle.

I can feel my heartbreak from the loss of our boys, becoming less, but their familiar natures are hard to unlearn. Having young cats and not old man cats, where you are used to having something wrong weekly, is an adjustment.

My breathing practice has helped stay calm when I hear a bang from another room, breathing has helped keep my concerns at bay...and breathing has helped me sit for an hour just to move a string back and forth so that I can pet them a little longer each time.

Breathing helps.

My breath is my strength

Blue dress and pearls

 I awoke today ready to wear something different...

I didn't wake up soon enough to wash my hair first so I threw two barrettes in my mop and shimmed on a dress I had bought online in mid 2020 thinking I would wear it to an art gallery or show.

That didn't happen but I made it work as a celebration dress for today...I dug through my jewelry box and found my pearl necklace, I was gifted a pearl necklace when I was 13. I think I have worn it twice...

Today, today was the day.

A blue polka dot dress with a peter pan collar, and my pearls! 

I watched the inauguration from my phone, holding my breath terrified something horrible was going to happen, and then she walked up to be sworn in and I started to cry, happy light tears... like an exhale that I had been holding for far too long.

A woman in power, a woman of color and substance

HOPE

*******

I have been taking self portraits since the beginning of the year, to help document what feels like a slow decline of my mental health. I was gifted a polaroid camera that takes multiple exposures and it fits well into my photography style. 

It is a classic response that artists turn their gaze on themselves first; they are the closest and most eager subject. Self portraits are as old as art itself...

January 15th 2021

© The Barreness.blogspot.com

Photography is what saved me from myself before and I feel that it is still trying to do it again.  I treat my camera is like an enchanted being...a separate living entity that is capable of influencing me. It has convinced me to mostly be braver than I thought I was, stand my ground to capture what scares me, excites me and inspires me...for that I am forever in it's debt.

I have been taking almost daily self portraits since before quarantine, and it feels like a hissing valve is releasing each time I press the shutter. With this new instant camera it feels a little like spirit photography, except I can capture my mood or dual most dominate emotions running in my mind.

The year hasn't changed much since it turned back to January, in many ways it feels like a 2.0 version, same shit, some features amplified, while other are phased out.

I haven't been sleeping well, despite the fact that I am still meditating multiple times a week, taking vitamins, exercising, and eating healthy...but I am haunted in my sleep by the loss of my animal companions, relationships, travel, forgetfulness and desires.

Last week I was so exhausted, I made some lentil soup, The Barren and I ate, I smoked some pot and slipped into the bath (that barely covered my knees, we are still in a drought) and then fell into a sleep. I was in bed for 11 hours, and slept for maybe 9 of them.

I tried to do it again last night, but I was awake most of the night again, either peeing or staring into the darkness of the ceiling and trying to make the constant static in my ears dissipate.

This week, my father is having back surgery for a pinched nerve that has left him hobbled and unable to stand, walk or sit. The surgeon explained that he could only do this "relief surgery" because there are no beds in the hospital and so this was the best he could offer. Ideally this will reduce some pain, and allow my father to stand again. I'm a little scared but I will spend the day waiting with my mother and bear witness to her manic swings in mood.*

*my mother is my fathers EVERYTHING and she doesn't sleep much and refuses to nap so she prone to bouts of manic swings of extreme happiness or sadness based on what she can process.

2020 was TOO REAL

It was too much, too often, too deeply, and too brightly raw

Exhale bullshit in two parts

So yesterday was a red flag day, rolling blackouts and an official stay at home order.

Normal December day, with temps in the 80's and no rain in sight.

I am working really hard on not seeing this as a twisted version of Russian Doll

wake up, and start only to have the air knocked out of you after the first foot hits the floor.

I have stopped reading the news again...after seeing the ding dong loose over and over in each recount it was all the joy I needed.

The Barren has grown more and more concerned as things are shifting again, and there are people plotting violence and no order from officials about stay at home orders and the virus is spreading at a break neck speed...so he is mentally preparing himself and maybe me in a way, for civil unrest and war.

I continue to try and keep my eye above the ground and be a little afloat in this sea of chaos.

My parents are bored out of their heads, and I am concerned about their mental health as this wears on.

My extended family is a mix of " fuck it " and " I don't think I'll catch it" 

So that is reassuring and has made it so that we barely talk to anyone...

isolating and strange silences.

My MIL called The Barren this past weekend to proclaim that she was not doing anything for Christmas, and that we are to expect nothing from her. There are too many stupid people spreading the virus and she is staying in.

So you know we talk with her still...

My FIL called and spoke to The Barren to share some craft stories and let him know that he is waiting for the vaccine....so we still talk to him.

My SIL (brothers family) maintains hermit status and home schooling and the two teenagers in that house are going loopy from isolation. While the littlest is happy to have so much time with everyone.

The dogs agree.

So you know we still talk to them.

My bestie and family isolated for two weeks after being exposed by extended family who bullied them into a visit with their 90+ yr old grandma.

Thank goddess besties family all wore masks and stayed as distance as they could as after the quarantine and testing they were all negative !! but the extended family were all positive and got sick.

I flirted with the idea of stopping at my local thrift store to take a peek, as I have not been thrifting since March and I miss it A LOT...

but the line of people outside made me drive on and whimper a little.

I have pulled the holiday décor out, and moved the cats from the mantle to a sunny window so I could decorate the mantle with holiday décor to remind us that it is indeed winter, and holiday time and that there is A LOT to be thankful for.

We are still wanting to be married, we still are healthy, we have healthy family and food in our tummy.

**********************

Part two

**********

Solstice morning- hair aglow

I wrote that earlier this month, and now that we are celebrating Solstice I decided to return for some more reflections.

Today's mediation focus was on changing pain, and reflecting on the bright return of the sun.

It was another lovely cool morning in the park, crows over heard cawing and little birds chirping in the grass under the trees.

I love the feel of the cool wind on my forehead and the quiet that soothes the now constant hiss that my ears produce.

I was reading about the confluence of the planets last night and how it is a time of great manifesting.

Thinking bigger than a foundation, bigger than you would normally think...

I have been having a hard time wanting things for myself and career.

I wonder if I deserve them...or if I have earned them.

If it is really too late for me...

but I want it all!

I want to want it passionately again, drive myself hard to see those things...

Imagine big bright goals.

Places far away, father then I had imagined...

I guess this year has made it harder to see things in the future, dreams that were once easy to imagine are now muted with doubts and wonder if I can go far away again.

I will think on my dreams, the ones I can't imagine for myself and maybe something, somehow will manifest for the future.

The stay at home order is in place, but the numbers are still through the roof and most of the area hospitals are near capacity. So I continue to only go and do grocery shopping, and park mediation classes. I drive by first and assess the crowd and if it seems crowded I pass it on to another day.

I made myself a couple new masks, and strip down when I get home changing clothes from outside to my inside clothes.

My father had a follow-up visit to his physician and thankfully took a list of questions I was set to ask to the appointment and learned new things about his headaches:

My father has viral meningitis most likely contracted back in December of last year...

one of the after affects is long term headaches. 

He is experiencing other elements too like:

 being off balance, sleep issues, light sensitivity and bruising.

His medicine, is giving him hand tremors and accelerated short term memory loss and mild hallucinations; things I noticed in his actions.

The physician saw that I wanted to be involved in the appointment but because of the virus only my father and mother could attend the appointment.

My father is most upset about the fact that he has gained weight.

My family has a HORRIBLE relationship with food and body image, 

 his weight gain is forefront in his mind.

I love the image of the Moon being put back to bed...

as nights becoming shorter, the sun waking and starting to shine longer

and the potential of rain in the middle of this transition, 

like tears flowing as one season says goodbye to another.

So I will sit today, reflecting on health

art

love

desires

and 

hopes for the new days ahead.

Exhaling the bullshit 

inhale

exhale