Your Body Hates Itself

 With my most recent visit to the ER, oh yes there has been another...

The Barren was away and so I took myself at 4:30am. As I sat on the ER bed, with multiple band aides from missed pokes for blood and IV, holding back tears from frustration and discomfort and trying my best to keep a brave face I texted my brother to let him know where I was.

He in turn came the distance and kept me company as I waited to find out what the newest test results were and to be happy to learn my appendix was still okay, but my Crohns was still busting my intestines up like a rock star in a hotel room.

When the doctor came into the room to explain that things were the same as my last hospital stay a month earlier, and they were increasing the steroids and I needed to contact my doctor about changing medications as my infusion drugs were not working.

My brother asked why this was happening? The doctor looked at me (like, you wanna tell him?) and then turned to my brother and said "her body hates her" Then smirked and said he was off to call in the new prescription. My brother was kind of shocked and then I explained how my autoimmune disease is attacking me and is being extra aggressive at it. With a better understanding he and I were discharged and he walked me to my car with the overnight bag I had packed just in case. I arrived home shortly after The Barren, who had driven 6 hours to get home to me. The next couple of weeks were filled with calls to insurance and pharmacies and now I am on a new drug. 

My bestie texted that she needed to see me and that she bought a ticket to see me. It made me cry and feel MASSIVELY touched, special and awkward about the attention...but I was looking forward to a mellow weekend with her.

It also just happened to correspond with me stopping the newest round of steroids while maintaining the new medication, another bump so to speak. The Barren was once again booked to be away for a week and I thought it a good idea to not be alone. She arrived on the afternoon after I awoke with mild discomfort...and as the weekend progressed I was more guarded with my abdomen. 

She had all the energy in the world! We went to as many thrift stores as we could handle and I barely ate or rested the whole visit. I had arranged for a massage for us both, something I try to do when we see each other (as it only happens a couple times a year) and I quickly realized that my abdomen was quite tender, so I could barely lay face down for mine.  I think I hid it well, she talked about how amazing hers was 💓 we ate afterwards and when we got home I told her I really needed to lay down. She snickered a little and then we said goodnight and as I was crawling into bed I could hear her snoring from the other room 😏

The next morning I made homemade waffles and we chatted a bit before I needed to shuttle her back to town...on the way she asked if we could hit a couple more thrift stores...which we did and I found a couple things and after dropping her off. I was glad to give her a vacation and she was quite relaxed when I drove her back, prepared to deal with her parents and the 6 hour drive home.

 I drove in total silence on the way home. 

I collapsed into a HOT bath and bed after feeding the cats. I was so touched she came to see me, it is rare we get that much time together anymore without partners injecting themselves into our activities or plans...she had a lot on her mind and we had space to talk it out. In the end, though...

I was left exhausted, in discomfort and spun.

I spent the following day in bed with a heating pad, when I woke up I considered calling my doctor who was on call all weekend, but I reminded myself that things were gonna be bumpy...I sat and spoke to the little scared girl in me. Spoke directly to my brain and we had a long conversation.

I moved slowly, put on a new pair of thrifted super soft, loose bright orange pants (like a traffic cone) and only left the house to water my garden and get some melon from the market.

This morning with the help of a heating pad I am feeling better, not perfect but better and I know tomorrow will be another step away from bad.

The fundraising art exhibition I worked hard to get into opens Thursday, so I am focusing on feeling good for that so I can stand and be social for hours! 

This disease has taken advantage of my good nature, my kind soft edges and run me over repeatedly. 

I am actively fighting the depression that accompanies pain.

I am trying hard to flip the script with my brain and focus on how hard my body is working, how thankful I am that my body keeps showing up for me. How strong it can be and how it is able to rest and heal.

I am not allowed to travel (according to my gut doctor) I am too fragile, and that hasn't sat well in my heart...but I understand it. So when The Barren takes a BIG international trip for work later this year, I will be at home...focusing on my stillness, healing and hope that the next one I will be holding his hand the whole time.

Time after time

 ICE is in my town

I can hear the helicopters daily

My neighbors are all on edge, and terrorized.

There are trucks chasing down people, ripping them from their families at school drop offs or at work places. They come in unmarked cars, with people spilling out of them some in uniforms, some not. 

They are terrorizing the local farms, greenhouses and field workers. My area grows strawberries, celery, broccoli, avocados that not only feed our county, but the state and the nation.

I am forever wounded from what I have seen broadcast across community protection live-streams, help your neighbor, film what you see, encourage them to be silent and not allow entry.

One of my senators was handcuffed for trying to ask a question yesterday.

I am immunocompromised and exhausted, but today I am printing postcards that will be addressed and handed out at the protest tomorrow, in hopes to get more people to contact their representatives; write their rage to the white house and supreme court.

These most recent days have re-awakened a level of generational trauma I didn't know I carried.

I have planted food, I have touched earth, I have sat in contemplation and I am so deeply enraged.

I will not make excuses or ask for forgiveness for it.

I am shouting and screaming and fighting in any way I can.

My neighbors deserve better, children deserve better, the world deserves better.

Shake the disease

 So it has been a shit couple of weeks. 

More than normal kind of shit.

I landed myself in the ER and had to stay overnight in the hospital.

 

I had some mild tenderness in my lower right side and my gut doctor told me that if that ever happened get myself to the ER right away. So after a couple of days of trying to figure out if it was a pulled muscle, a tender ovary or what, it got more tender and I went at 5am to the ER. 

I was taken back right away, and then it all became a flutter of activity and I did everything in my mind to remain calm. The Barren was with me and I am thankful for that. It was the first time doctors assumed I was in pain, and I kept having to tell them that I wasn't, that it was tender. One doctor even said " we as men would never be able to deal with the pain women deal with daily, and I just want to make sure you are not in any pain" I think that is when I stopped processing reality. 

After a change of nurses, IV placement, starting some antibiotic drugs and taking blood- 6 members of a  surgical team came in all at the same time as a second doctor. When I heard surgical team, The Barren said my heartrate rose quickly and my blood pressure sat higher. I think there were 7 people in the room all asking questions and telling me things and it was like a tsunami of information was closing in on me. The surgical team determined that I didn't need surgery, but wanted to keep me overnight to make sure I would respond to treatment. The doctor said the same...I felt like Alice falling down the rabbit hole.

My autoimmune disease was in a flare and it is right next to my appendix, so they wanted to make sure they knew what was flaring. thankfully my little appendix is holding steady 💓

I got assigned a room, and moved out of the ER. As they were taking me there, they mentioned that it was the maternity floor so there is lots of extra security. The irony was another brick to a surreal day. I got my own room, with open bright windows. My nurse came in to ask me a bunch of questions, and then let me sit in quiet to process.

The Barren went home to get me a change of clothes and my HRT drugs and glasses.

I sat in my room alone for a while, quietly crying, sitting in the strangeness of the morning that had unfolded. A whirlwind of people, drugs, questions....

 What had just happened? What was happening? over the course of the next few hours I was visited by another four doctors and surgeons asking the same questions, pushing on my tummy and asking how much pain I was in. I only insulted one surgeon by asking questions he couldn't answer and then as he left he said, I'll see you in 5 years, and I said..." for what?!"

Then my gut doctor arrived and The Barren was there, and we got everything explained and I was empowered with information and soothed knowing I had come in at the right time, done the right thing and that my immune system was too smart for my infusion drugs it seems. Blood work would determine it...I still had options and ways to treat and ideally avoid additional issues. 

A new level of learning had taken place, I was confident in knowing what was happening, and could explain it to others. That made me feel better and seen and thankful.

I was moved again to the top floor of the hospital for my overnight room, and had a view of the coast and a couch and was still solo. The Barren was so flustered and freaked out, he kept a brave face though... The hospital didn't know how to feed me, so The Barren brought me a couple things from home in a cold chest. We had eaten most of the food from home as this was the weekend before we had to leave for the fumigation...The Barren focused his attention on packing what I had not gotten to yet. 

My overnight was strange, and I tried to reframe it in my mind as a messed up hotel stay, or think of it as a hostel stay from decades ago. Never knowing when a person would join you in the room or what those sounds were. I didn't sleep much, I was anxious and the bed mattress is covered in plastic, so I spent a good part of the night sweating and tossing, trying to not bend my IV arm and fighting restless leg. I knew the nurse was coming in at 11:30 to give my steroids and so I set a alarm to wake before that and avoid being startled awake, and then again before her 5am vitals check. The early morning wake up worked well for me, as I treated it like I was getting up for yoga, I drank water, I got out of bed and washed my body with a washcloth and changed my clothes. I had time to sit in front of the big window and watch the sunrise slowly....in fact because I was out of my bed at 5:30 when the group of women from surgery arrived they were confused who I was. I got up from the couch and said "it is me, I'm the patient " and I walked over to the bed and sat down for them to ask their questions and then confirm that they were going to release me from their watch/surgery standby list. I thanked them and told them as lovely as they are, I don't want to see them again. They appreciated my humor and were glad to recommend the release. They were followed by a line of doctors who were astonished by my nature and were happy to declare/recommend that I was too healthy to be in the hospital for another day longer. My gut doctor arrived around 10am to have a detailed conversation with me and it was actually quite validating to have a doctor explain why and what he was concerned about, how we can move forward with other medications if needed, but that the blood work will take about two or so weeks to get back as they were sent to a remote lab that does the special testing required to get answers. I told him that if I wasn't an artist, I was going to be a doctor. That I was obsessed with microscopes as a kid and still have mine, but I realized it was actually a tool to view light and that it makes sense now that I am a photographer. He shared how he has always been into illustration and we talked about his graphic novel that he drew in medical school to remember drugs, interactions and reactions. It felt like an honest real conversation and I thanked him for empowering me with true knowledge, not speaking in a derogatory or dismissive way to me about my disease and having patience for my questions and always looking for answers for me. It was something I really admired and trusted him for. He was touched...and felt that although most people stay in the hospital longer when transitioning to steroids he felt that I had a true sense of what I needed to be aware of, look out for and was comfortable releasing me a day early to my own best care.

I was in the car with The Barren at 1:30 that afternoon headed to get some food to bring home.

I ate and took a nap and the following day I resumed tasks for moving things for the fumigation. A friend came over to help move my patio plants down our stairs and across the way and ended up moving a few before hubby couldn't find a cat* and then the whole thing stopped and never really started again until I had finished moving the patio plants myself, and digging up my front yard myself to move those plants to a friends home via a truck. Over the next couple days and into the week following, I did more than I should have, but I measured myself, took moments of rest and focused on eating well and drinking more water than normal. It has been non stop and yesterday was the first day I made space for myself to simply focus on a monumental art project that is due in one month. I ended up being exhausted yesterday and although I spent it not doing anything real for the project, I let myself rest....

Today I gathered some supplies and started to plot out ideas. I am going to do my best...and focus on simply making things that make me happy. Re-centering the goal. 

I am learning something new everyday about how strong I am, how tenacious I can be, how soft I can also be and sometimes I just need someone to tell me I didn't do this to myself. The little girl in me is feeling like she needs some reassurance that she isn't bad or being punished for something she did that she doesn't remember. I had a lot of quiet time in that overnight, and this past week, where I reflected on all the past medical trauma I have survived and how it makes me when I am around doctors and in medical environments. Infertility made me an advocate for myself, and my love of science made me question and look at things deeply....now I have to combine them and learn how to live with these autoimmune diseases in a way that make sense to me.

*the cat was found, she was watching us run around looking for her and made no attempt to assure us. Typical cat move.

Ironic

 So last year I saw Alanis Morsette at a local eatery and I was star-stuck and giddy...it took days for the smirk to fade from my face. It was like getting a postcard from me of the past. Music that made me feel good, powerful and emotionally strong. As I was talking to The Barren about it, he said " I didn't know this about you, I love hearing how much you really connected with her music"

Now, we are choosing to not revisit that eatery as it is one of many places in town that support the current administration. We have chosen to make purposeful choices with our money and patronage. One of the small but important acts we can take in our little life right now.

A lot of the time it feels like the moment the gang from Scooby Doo reveal the villain.

Or when I realized the lilypads were fake at Disney and were really water filters.

I have the Goods app on my phone and although it makes my shopping take a bit longer, I feel less weighed down by my final choices and have switched things up in our life.>I went to Jury Duty last week and while sitting in a room of people I wondered how many voted for this shit-show of a government. I didn't have a long stay, turns out there were no cases that day and we all got dismissed and so I left for home a couple hours after arriving....then proceeded to get more obvious signs of a brewing head cold or side effects from my most recent infusion. I know I have been running on adrenaline, depression, stress and ADHD, so it doesn't come a total surprise that there was a tear in the fabric of my well being and a bug got in. The idea of serving on a jury occupied a lot of my mind and I was quite conflicted how I felt about the act. The US is running on fear and lawlessness, chop and burn techniques and frankly the SAVE act, that wants to remove more rights had me wondering why should I uphold/believe in a system that is set to tear down and remove more persons rights?

I know my stress is high because I am over processing and over planning all the parts of an upcoming fumigation for the community I live in. I have read pages and pages about the fumigant, I have researched it and after effects and what I can and can't control.

Can't: my front door plants will probably die

Can: order bins for dry goods and take them to a friends for a few days, arrange cat boarding because no hotels allow cats, and my reaction to the variables.

Last night I made a choice to go to a local city council meeting to support some friends that were speaking before the board. The room was packed! Standing room only it was a hot topic, asking the city council if they would protect its citizens from federal overreach; protect residents from deportation, protect our trans residents and protect doctors and residents healthcare and abortion rights. 

The city council listened to 132 speakers, including teens who were wanting safe care, wanted to stop hiding from ICE officers for fear of being deported, parents asking for protection for their trans kids and themselves...each had 1 minute to talk. Many were in support of the measure, which would add additional protections beyond the state and federal constitution and then there were the racists, and "right to lifers" screaming about how it would kill babies complete with their billboards and yelling over people, bullying speakers. When everyone said their piece, 4 hours later, I sat there and listened to the board saying they wanted to do something BUT....they feared lawsuits and federal funding being with drawn, they felt it would only be words and nothing more...in the end they ended up pushing it another 6 weeks out.

I awoke this morning, still battling whatever is in my sinuses and head...weary and dull.

Last night it felt like I was witnessing history again, apathy and fear proving stronger than community and strength and comfort.

To look for the good; I stood beside people I socialize with who were there to fight for more protections for people they don't know, maybe know, and love. I took heart in that. I watched women plead with the council to protect them and their children from unwarranted racial profiling and deportations.

My heart hurts...

it hurts so badly.

  

I wondered where the super hero is, who is going to make this all go away fix all the cracks and swoop up the bigots and racists? and then I remembered it had to be me and the wary army fighting a goliath of a cause...the snowball that has grown big and needs to smash into a shed.

Call Me

 

Shit is real

I have found myself on more than one occasion staring off into space.

Trying to figure out where the ground is, as everything seems to be floating in zero gravity.

I decided the days after the election, that I would spend time everyday calling my representatives and so far it has stuck.

I have an app on my phone that gives me scripts and direct lines to their Washington DC offices. Only one of my three actually have people answering phones, so the other two get multiple emails from me personally and then multiple emails via resistbot and robo emails.

Then I try and find things to do that distracts me from reality....I am also going to be attending some training on other facets, to see if it is something I am best suited for.

I am sickened in new ways everyday about HATE, RACISIM and MISOGYNY

I do not refer to the humanoids that have taken power as anything other than 

rumpled foreskin and the frat bois. 

I am truly at a loss for reason to be any kind of sympathetic to anyone who has chosen this.

I have drawn my line.

We are currently getting rain and it is the perfect scapegoat for me to stay home and doing other distracting tasks like organizing, rearranging and thinking of new art to make. Mostly what I have done is cook soup, move piles of tax paperwork and feel overwhelmed.

I visited my parents yesterday. My fathers psychology notes mentioned that he was considering leaving treatment, so I went to chat with him and ask why. He mostly was defensive and didn't want to bother anymore. I used reverse psychology and his love of self to remind him how much he loves the personal one on one time to talk about himself and that he is always saying that he wants to be a better person. These were opportunities for him to learn how to communicate better for himself and explain with words what was bothering him instead of just shutting down. My mother is supposed to start mental health treatment too, finally.

When I phoned today to see if he could recall our conversation from yesterday or even my visit, it took some prompts but maybe my words worked. I think he feels like this is his idea and that might make things continue to move forward.

I saw a friend yesterday, and they were taking photos. When they showed me a couple they had taken of me they said "you are always looking tired these days"

The Barren and I are trying to tie up some loose ends with legal documents so that we can get them off our plate and mind. Things here in the US are unfolding in unpredictable ways and we are trying to make decisions while watching people chase laser pointers and claim they are real space lasers.

So to recap, I make phone calls...loads of calls

many of which feel like I am screaming, politely, into a void.

I am calling my ancestors, asking for guidance; asking for a path though, as my generational trauma bubbles to the surface of my dreams and thoughts...

I feel at times like life is eating me up...and I am constantly pulling myself out of its mouth and reclaiming a moment of quiet or space or peace.

I do hope that something is brighter and beautiful where you are

Super Callus Fragile Mystic Existential Doses

 I am thankful to say we have faired well through this latest round of fires...

I had completely lost my shit multiple times in absolute fear, triggered by my past evacuation experience. There have been multiple fires since the Palisades and Eaton fires that created a complete hell-scape for so so so many people. Erasing their homes, security and sense of identity.

I have never been a real organized person; I thrive in chaotic environments it seems. I like to have a lot to look at, be surrounded by and feel enrobed in. This makes for a cozy environment, a creative looking home and wild artmaking. Many times needing to protect the finished works from myself because I have created a huge mess making it. Storing it out of the way while I clear the clutter that created it.

I have been the final stop for the families photographs, a century of them! I hold the responsibility of caring for them and that responsibility has recently created a heavy burden. With each evacuation, I have grabbed them and have often forgotten my own wedding photo, or some other precious item. To help me work through the constant onslaught of sadness, fear and grief  from the fires and the election I started scanning all the images. I can share them with my cousins and niblings. That way I would not be the only one to hold them and there will be other locations to view them/save them. 

These photographs are some of my most precious memories with my grandmother and great Aunt, as they were the ones who made most the albums. Using the photos, or snaps as they called them, as a sort of trophy of times spent. They would have gotten on the social media bandwagon had it been around when they were younger. My grandmother printed everything, wrote the name of the people in them and until the prints were dated by the photo developers, she dated many of them and glued them into albums. Spending days scanning them is like spending times with my grandmother again, It turned into an emotional, sacred and bittersweet experience, as I was scanning the 100's of photos I started wondering if I was the only one who these images really mattered to. Does anyone else really care about them? Will these memories die with me?

Last week I went to a dinner with fellow women artists, hosted in a home of a ceramic artist. One of the attending artists lives in Los Angeles and spoke about her experience during the first days of the fires...recounting how on the second morning she went outside to assess the smoke and the sky turned dark and it began to rain pages from books! She said they were recipes, songs, hand written pages falling from the sky...these pages had traveled 10+ miles and were falling in her front yard. 

I had read an article that more artworks had been lost in these two fires than ever before. The loss of artwork is monumental and has left many artists without homes, studios and their life's works both in process and finished gone forever.

 I can only imagine it from what I had experienced but I can not imagine the profound sadness, fear and emptiness that the fleeing created in each unique experience. The loss of generational wealth, memories, personal space, HOME...I can empathize, but I am reminded it will last for generations.

Animal support

Help a Seed Library

Artist Aid

We sat with each other, talking about our fears, concerns, shock and how to move forward from this point. All of us shared ways we disassociate when things get to be too much. At one point, I suggested we take a group photo with my instant camera. All agreed and after balancing the camera on many different surfaces and makeshift tripods, I was able to get a group photo. I mentioned the silliness was like being in a slumber party and that made all the ladies giggle with memories of time gone by. A photo was captured of me, bending in half to try and see through the viewfinder for one of the photos.

It was called the "human tripod"

Between the fires, staying off social media for a week to regain some sense of calm to focus, I came up for air just in time for the ICE raids today in my town! I know the next 100 days will just be shock after shock in an effort to make us all apathetic and so burnt out we don't respond anymore...but it is not going to happen. I know others that feel the same and it is in those people who I set my light to.

Although I am super callused and done with a lot of things

I am still fragile but also believe in magic

even amongst all the back to back existential crises

Shifting mindscape

 The new year has arrived and with it all the stress and terror about what these next few years will unfold and release. So many unknowns and fears and realities. 

It is like one thing after another, so surreal and so hard to really wrap my brain around...

I read somewhere during quarantine that the human brain wasn't designed/built to handle this many stressful events. I try and say that to myself when I am faced with a 4foot thick wall of stress and anxiousness and fear. 

"I am not going to be able to manage all this into a neat orderly situation that I can fix"

I have found my time out in public is feeling more feral. I don't reach out to talk to people unprompted anymore. I purposely don't make eye contact with people, especially men; and when engaged I stare strait into their eyes with a "don't fuck with me, I don't trust you" energy.

I am feeling so many feelings and not quite sure how to process them anymore.

I fear I am not preparing "right" for all these new unknowable's, and unimaginable scenarios. I have stocked up on a few women's healthcare supplies, just in case. Our little bit of savings are being managed by professionals, I have asked my doctor about my medicines and if the medical system changed...he assured me that the medicine I am taking or would change to is currently manufactured and readily available. (not totally convinced but I can't manage everything) I think my glasses are next on the list to upgrade before too late here. I am trying to secure me, as being a woman in the US now has some potential real changes. It is hard to imagine this...like beyond unreal.

And right on cue, Mother Nature shows us all that nothing is okay and has started some of the largest and most horrible fires that my state has seen in a while. Soooo sooo much loss.

My fire app is sending notices every hour it seems, new fires are everywhere.

I sit here and wonder, stare and dissociate.

*****

In an effort to flip my mind in a new way and not cement those neuropathways...

I made an impulsive decision last week to buy tickets to a small circus that was visiting our town. I drove by the tent for a couple weeks on my way to predawn yoga, the lights of the tent glowed in such a magical way. I had The Barren make a detour one night so I could try and take a couple pinhole photos. Then Friday last week while I sat in the car at 5:45 in the morning, I bought tickets to see the show. I splurged and got the VIP tickets so we could sit as close as possible. Thankfully DH knew I was trying to self soothe and went along with me with zero hesitation. As I stepped out of the car it was like I let go of all my sadness, and forced myself to just embrace my childhood glee. I cheered loudly at the preshow performances and just about burst into tears with joy as I walked past the ring leader standing on a box playing the song from Amelie on the accordion, at the entrance into the tent.

It was an old style Italian circus; there were dropped juggling pins, kids freaking out, a horse that stood its ground and a single clown who ended up sitting on my lap! Simply put, it was charming and well worth the time.

My face hurt from smiling and my muscles behind my ears clenched from so must laughing. The jokes were corny and predictable but I didn't care. I had taken off my airs when I left the car and thought, this is what a moment of joy feels like, embrace it.

It was magic and I was thankful I had that little voice tell me to do it.

My world has shifted for sure, it has radically changed me and the way I see the once amazing world that surrounded me. I am grateful that I wake up each day, and I continue to choose to fight the urge to go with the flow. I work everyday with maintaining my calm and processing unaccounted for things and situations. It is sometimes a real struggle.

I am thankful I have a home, a loving partner and a couple friends.

I am thankful that my body continues to show up for me and my family both chosen and blood related is relatively healthy.

I don't know how I could have raised a kind little person through these times...I fear I might not have been able to show up for them in the best way.

I guess I need to just start small again, and just keep showing up for myself

I hope that all of you can keep doing that too.