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. 

Baseline

**Brain dump-trauma** 

 I didn't go to the Bog Witch meeting, I chickened out...or found myself distracted enough to let it slide by. I was embarrassed at myself...and then spent time rationalizing why I didn’t make the effort to go. In the end, I simply made myself dinner, sat and watched something on tv and pondered what happened to my get up and go. 

The Barren is currently overseas for his big business trip. He has been adjusting well, and getting things done and exploring and being pampered by the hotel and his company and coworkers. It is really beautiful to witness and although it was so horrible to watch him leave...I am happy that his experience so far has been a good one. I watch his air-tag move around the country and city and it makes me feel more assured in many ways. I can't say it has totally eliminated my catastrophized scenarios, but it has absolutely muted them enough that I can do other things.

We got a lot of things done and sorted before he flew off, like our will and deep conversations that were overdue. It was so beautifully intimate and healing for us both. We celebrated our 23rd wedding anniversary and went out to a dinner. He was so overwhelmed, that I did all the planning and was the only one to share a card and little token.

Meanwhile I also finished my end of the year art deadline, finished a commission, got accepted into a show in NY city, won an international award, stripped my community garden space, shot portraits of a collector couple of mine and finished my 1000th yoga class.

To say I have pushed myself into high gear is an understatement and I don't always run on high, but I have been having more manic style energy bursts since starting this medication.

The second week The Barren was gone we got rain, like A LOT of rain and when I went to use his car for errands, I noticed the rug was shiny...then on further inspection I found the rug was TOTally SOAKEd and the back passenger foot-well had two inches of standing water in it. No open windows, no open doors...the inside was dry...but the floor was under water! so I spent multiple days getting as much water out as possible between additional rain storms. Yesterday after multiple hours with a shop vacuum, I "tapped out" and drove it to the mechanics for professional help. I had done everything I could and still it wasn’t enough. I contacted the insurance company and filed a claim, and now it is with the professionals.

********

The Barren is home, safe and didn't get sick! MASSIVE WIN for us both.

A funny snafu was that I had kept all the information about his car to myself, as there was nothing he could do from India and so I figured I'd explain when I went to pick him up. The night before he was set to travel home, the mechanics texted him an invoice! He called and said why are they texting me an invoice, is this spam? I explained what happened and we both had a massive laugh about it. He has been considering another car and this might have been Mother Nature’s push to change things up.

Since his return we've hunkered down and have been taking things at a slower pace. He leaves again Sunday for another trip but this time only East and for only a week.

Last weekend we got some results back on my father, and it will require some more appointments, procedures and patience. Upon this information being shared by my parents to other family members, I got a phone call the day after. Actually a conference call with a slight interrogation feeling to it, asking me what I am doing and how this is being addressed and why I wasn't pushing my parents into making choices, and do I trust the doctors etc...

I finished the call, and stood up to find my whole back had a spasm and my left hip was trashed. I have spent the week stretching and heating and taking Tylenol. Thursday was the BIG GALLERY exhibition and I want to be able to stand and share the excitement of the night and my accomplishments.

I ended up at the massage therapist on Wednesday asking her to cast spells, and do any other magic should could do to help me be more comfortable. It is most likely a sciatica episode and as I have NEVER had this happen before I was learning as I moved through it.

She gave me a massage, and did some cupping, reiki, hot stones and preformed some serious magic to my back and hip. Leaving me so so thankful!

I arrived at the big event last night rested, ready and in little, to no discomfort.

I was able to get a couple photos just after entering the event, and then my in-laws arrived. I love that they come to this event. It is always a funny surreal moment, as my mother in law has hearing loss and doesn't read the room, so I have been interrupted in a conversation more than once by her interjecting herself, because she can't hear I am already talking. My new father in law is often decked out in a Santa cap and seasonal shirt and wandering about with a smile taking in the busy gallery scene. Last night was the same, so when The Barren suggested they head out front to get some air, I followed and they rested against the front window, chatting and then....

My father in law suddenly collapsed, I threw my arms out and caught him before he hit the cement. He seemed to have fainted...he recovered and stood up again, and while I was chatting with him...he collapsed again...this time for longer and I caught his crumple again, making sure his head was safe and straightening his legs from below himself. The Barren called 911 and the response was swift. I kneeled on the sidewalk next to him talking to him quietly and convincing him to let a professional make sure he was okay. 

My mother in law just kept saying this has never happened and he was tired. As wealked her to the car, I reasched out and placed a hand on her shoulder, to which she responded "I'm fine", I looked her way and said, sometimes it is just nice to be reminded that you have people around you that care. She didn't really find comfort in my softness, so I let the words float away. We took her to the ER to wait for word. He was being treated for dehydration and low blood pressure and after hearing this my MIL told us to take her home. He had other labs being done, so she would wait for results and his call to pick him up from home where she had a car. She shooed us out and we sat in our car for a moment wondering WTF just happened!?

We went to a restaurant in town to stare at each other, ask each other over and over " you okay"; my hip/thigh pulsing in pain and try to process the evening that just unfolded under a beautiful full moon in front of the gallery on the biggest night of the year.

As our food arrived, MIL texted that he was released and home. As of this morning, although he didn’t sleep well, he was fine and she'd check his blood pressure before they take the bus to retrieve their bikes from last night. 

So that was last night.

Totally normal, totally surreal, absolutely baseline for this year.

in reflection, I am thankful that my body carried me through the night, never once faltering at what I asked from it. Showing me how strong it is and how capable I am.

My cousin was there, helping me by getting me a glass of water, putting hands on my shoulder, while The Barren supported by his mom and answered questions. Her question was "how can I best support you right now?"

Kindness does matter

Keeping Score

The Barren has been isolating in our bedroom-bathroom combo since Sunday last week. We are wearing masks indoors and sleeping in them. I am on the opposite side of our 1000 sqft home with the cats and the kitchen and access to the patio. I have been washing my hands so much that the skin between my fingers has cracked open. I have raw spots on the tops of my ears from the straps of the KF94 masks, 

Wednesday The Barren started to feel less overwhelmed with Covid symptoms and was in a cheery mood. Then around 7 pm he said he didn't feel well. It slide quickly and extremely into him screaming in agony. He sat in that pain for four hours before I said, that is it we are going to the ER. 

We ended up going twice in less than 12 hours. The first was blood, urine and a CT scan. The second was blood and an Ultrasound and more effective non-narcotic drugs.*

If you are keeping score, that is COVID, and 2 ER visits, 1 hour of sleep in 36 hours and no food. When we returned home, the Barren went to sleep and I slowly fed myself and sat outside while the sun began to set and dissociated. So that was one WEEK! 

He remains COVID positive and I remain COVID negative.  He is quite blue today, which completely makes sense and I am trying hard to keep a stoic face and the mood floating. Suggesting silly conversation topics and encouraging a micro masked walk, which ended in him being winded, but glad for the time outside the house.

I can honestly say I see how it was for him all these years. Witnessing me in pain, from endo and my own gut issues. I feel the same helplessness, and the fear of being too far away in case I am needed at a moments notice. I think it unlocked a new level of our relationship. When I was suffering, I was only really able to view it from my vantage point, seeing how he stood by and supported me with gentle touch and his presence. I am not even able to touch him, I sat outside his room pacing as he was screaming in pain asking quietly, where it hurt and coaching him to breathe. It is was ridiculous. 

I rubbed his back in the ER, and sat beside him in the isolation room the second time. I watched how the doctors treated him and advocated where I could. It has been exhausting and I really have nothing left in me. I think my mallet head for my whack-a-mole fell off and rolled down the street. I am too tired to find it. I am feeling broken and sad. I try to think of this as an opportunity to remake the situation. Blossom like a phoenix or some other stupid cliché...but really all that matters is him and his health. 

On Wednesday night, just as his pain began I got a text that my dear friend went into surgery to remove her kidney as it had developed a concerning lesion. Thank the goddesses, she made it out without complications. Now she waits for those new organs.

As I sat in the sun this morning sending a text to my mediation teacher that I would be missing class and why, I thanked her for her guidance in teaching me ways to calm my mind in stressful situations, mantras for healing not only myself but anyone who needs healing. She replied a reminder to take it one breathe at a time and that we possess the weapons of patience and peace.

* his diagnosis is an inflamed gall bladder with small stones

Grief

 I have found that my recent doctors visits are causing a wake. I am spun for a couple days after the visit or test. It seems to be more obvious to me now. Maybe it was always like that, but I wasn't as tuned into myself before...but it is like a neon sign to me now.

I can mask fairly well during the visit, but afterwards, it is like a crash. I want to cry and hide and be taken care of. None of which are realistic anymore.

Having to receive monthly infusions now has challenged my sense of self and belief in my strength.

Am I really a strong woman or have I just made myself into a character in my mind? A woman that can handle anything thrown at her. A woman that can balance all the dishes and dance steps. A woman that can smile no matter what is being said about her. A woman that can walk into any room with confidence and poise and carry on a conversation with anyone there regardless of the topic.

Now I feel like a shell, I feel broken and covered in duct tape to hold it together and no one seems to notice because I have enchanted them for so long, they can't see me any other way.

When I saw my doctor last I broke down on the exam table telling her I was overwhelmed and she told me to be thankful of all I have. It felt like a slap in the face.

When I started getting my infusions over a year ago, and all the tests prior to that, I had drawn a line in the sand, that I don't want needles in my hands. I had a horrible experience many years ago from an ER hospital visit where I got a series of small hard lumps in my left arm that took months to resolve. I was in so much pain from them that I told The Barren that I NEVER want an IV in my hand ever again. My line was upheld with one exception, my endo surgery back in 2012.

Yesterday I had to cross it again at my infusion with a new nurse.*

Tuesday (the day before) I went for an MR enterography. For mine, you have to drink two and half bottles of thick fluid that lights up your gut, and then they give you medicine to slow your gut down, and then inject you with contrast, and take a bunch of photos face down in a MRI machine. The nurse tried multiple times to get a line started in my arm, before declaring it done, all the while my left arm, was left sore, swollen, bruised and an unviable option for my infusion the next day. 

*Hence the need to seek new veins.

When the infusion nurse said she'd be gentle and not leave a mark, I had to fold...I had to get my long fought for medicine. My self advocacy tank was empty, what choice did I have?

I quickly set into play a weighing of the options in my mind and thought, 

Ideally this decision will not land me in the ER again. 

A phrase I use far more often these days.

After she placed the IV she stepped away to attend to other matters and I shed a couple tears...I told myself to hold it together until we were somewhere else. Somewhere softer than an artificially lit room, with artificial plants devoid of images, and filled with the scent of rubbing alcohol. I think I was able to wipe the teardrops without being seen. The Barren sent me a text message shortly after that promised I could cry it all away that night when he got home. That idea gave me some extra bravery and I sat a little taller.

Two hours later I was back in my car, and driving to the hardware store to pick up some plants to put into the soil on my patio before the wave of fatigue hit. I went home, ate some rice and tofu and sat in silence. Then around 5pm, The Barren called and said he could not make any more choices for the day and so I called in an order to the local Vietnamese restaurant and The Barren picked it up on the way home. He then told me about how horrible his day was and I listened and told him I was sorry he had a rough day, ideally things will be less stressful now that he was home. My arm was itching and aching from the day before and I think I hid that from him too.

I ended up falling asleep on the couch while he watched something on YouTube and then crawled into bed, asking him before falling back to sleep if he thought I was strong.

He said: you are a warrior, you have had to fight for so much.

This made me sadder than I thought it would. 

Infertility has taught me a lot about grief, and sadness appearing in new and unexpected places. It has taught me how to speak up in medical spaces and ask questions, but also fortify myself for the answers as they are often ones you don't want. It has marked me in ways seen and unseen.

The new infusion nurse told me that I had such a calm serene energy about me. I thanked her and realized that my outward self was on display and that my inner dialog of tears, duct tape and sadness was hidden from sight, thankfully.

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?

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.

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.

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