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.

Winter

The month is rolling by quickly...and I am thankful that I have survived the thanksgiving holiday event.

The Barren and I went on a road-trip for a week to visit family. We started what we knew was going to be a challenging week with an over night at my besties. They fortified us with laughter and smiles to carry in our pocket before heading into the eye of the storm. That was a highlight for me. 

The motivation for me was to focus and make sure The Barren got time with his father, even though the reason we were gathering was for my BIL who has stage four cancer and is currently on drug trials and under medical care.

The setting was not ideal, you see, he, his wife and their teenagers (nephews) are also some of the many people who voted for the orange IDIOT and is proud about it. He had stated in the past that he was never offended by the confederate flag, or the nazi symbols. Feels women are here to serve men, and that his god is the only god.

So as you can image I was quite conflicted about my feelings; wanting to be compassionate as they are living in a cancer world but also red hot rage at what they believe and live in. I was fearful and upset about being asked to sit at a table with him and his wife and teenage son. I used to have actual nightmares as a teen about nazis breaking down my door and the idea of sitting at a table with them was A LOT to try and digest. So in my typical lemons to lemonade thinking...I turned love towards my hubby as I knew he wanted to see his father and Aunt, as he fears that this might be one of the last times to visit with them. We made a point to try and spend as much time as possible with them. Hubby was able to play music with him and simply take in all that his father is. 

It was punctuated with some bittersweet reminders, as our MIL is quite a handful of needs and is almost completely overtaken with Autism, ADHD and mental health struggles. She is chronically late and was towing two dogs with her. One of which could barely use its back legs and was often left for hours and hours alone. Making for accidents in the rental house...and heartbreak to witness. It took her three hours to pick a wine from Trader Joes while the rest of us sat waiting for her to arrive to a pre-thanksgiving evening. Finally canceling dinner together.

When we all gathered for the meal, my MIL was already multiple hours late, I was so anxious, I found myself masking like a champ! My current food situations made this food centric "holiday" even more challenging for me. Everyone was asking questions and I wanted to evaporate. At one point I walked up to my SIL and whispered in her ear to "please stop asking about what I can or can't eat, the constant questions make me very anxious about food" She stopped and I was left alone by her for the most part.

I manifested a bit of Shosanna from Inglourious Basterds and hid behind my camera and took photos and did not make eye contact with my BIL. When asked questions directly, I avoided eye contact. 

I was a swirl of emotions and feelings and by the end of the night, I got in the car with my hubby and shut down completely. We left before dawn the next morning, spending the first few hours in silence. Not completely sure how we felt about anything. When I got home I cried and told The Barren that I wasn't brave enough. I should have stood on the table and condemned their racist, sexist actions. I was a fool to my ancestors and was just really disappointed in myself.

I haven't spoken to my SIL or BIL since thanksgiving night and don't expect to hear anything from them unless they want something. Which is how they normally are. 

I have been out of sorts since, but have been actively working on getting back into my stream.

Do you ever feel a whole body shift? Like you need to purge everything you have been doing to start anew? Maybe that is what I am feeling...

Maybe I am about to wrap myself up and become something else.

I got a space at a community garden, I am spending time there, sticking my fingers into the dirt and feeling the wetness on my skin. I am overwhelmed by the number of shifts that have taken place this year. My parents, my health, The Barrens stress, the responsibilities of home and animal companions, trying to make time for time with other people and myself....

I think I need a nap, maybe I am a bear and need to hibernate and awake in the spring hungry and hopeful again.

...deep fear

 I didn't sleep much last night.

When I closed my eyes I had visions of dodging cannon balls and trying to stay afloat in a disney park ride. I tried to self soothe overnight, saying things will look different in the morning...this is all going to be better...my techniques did not work.

I awoke to a literal nightmare...55% of Women and 40% of men nationwide voted for the MOST QUALIFIED candidate historically. My county is far more republican, racist, sexist and stupid than I knew and although everyone I know voted for Kamala, it didn't do anything except break millions of hearts.

I was in tears for hours and then decided to get dressed and leave the house for a few moments and do an adult task in a nearby town. As I was driving home I got an emergency alert on my phone: 

EVACUATION ORDER: YOUR NEIGHBORHOOD IS NOW UNDER AN EVACUATION ORDER DUE TO A FAST MOVING BRUSH FIRE. PLEASE EVACUATE IMMEDIATELY

I was only two miles from home and raced the rest of the way, grabbed a few things, corralled the cats into a bathroom and texted my neighbor asking if she got the same text...she lives 50feet from us and she did not, nor had any other neighbor a few blocks from me, 

I was convinced it was a cruel action on the part of the universe. Hubby came home after hearing my voice rattled and filled with fear, breaking under the constant pressure and stress. He came home and said in a calm voice, take this and lets pack a few things. I took the offered half xanax and have been packing things into my car calmly and the cats are hiding in the same room as me as I write this.

The last evacuation I was awoken from sleep and told to leave now, and we only had the clothes on our backs, our cats and laptops. It was a mess and now the sky has fire colors and thick smoke and the fire bombers are due to arrive in the morning…until then I am getting live updates about its movement as the night passes. I finally ate something only because I knew it was needed for brain activity. I am beyond heartbroken, broken and so so mad. I am not looking forward to the trip to visit family, as the person we are traveling for is a Christian fundamentalist who is celebrating today. And I am struggling to find any empathy/ sympathy or a crumb of kindness towards the family who all feel this was a golden move. The Barren told me to try and think of them as brainwashed…he is not looking forward to it either but I guess in a way to honor Kamala, when they go low we go high, right?!? Well, it isn’t working yet…and I am nowhere near close to okay about anything.

I vote 2024 as the most painful, horrible no good year. 

The Quiet

 It is quieter than normal today...

it is election day, the polls are open, the postcards have been sent, the calls have been made, the hopes are running at an all time high.

I, along with EVERYONE I know are waiting. Our stomachs are filled with acid, our nerves are burned, we are all exhausted, there is so much anxiety you can feel it in the air. 

My bestie and I exchanged texts this morning recounting what we are doing to pass time and not look at the news or think or hope. 

I woke up this morning, and before much thought, found myself doing 108 sun salutations trying to honor the energy I wanted to focus towards the day. Saying over and over President Harris.

I feel too many feels, thinking too many thoughts...

we wait

Stagnation

 

This is how I spend my hours in the infusion chair. I take selfies and snooze.

I am currently trying to make some art....my end of year submission is due at the end of the month and I am finding myself struggling to focus, be inspired and motivated into making something interesting.

I have given myself grace, space and time...and yet I am feeling like I am trying to pull from an empty vessel. I am exercising, watching what I eat, trying to get solid sleep, reading things that are interesting and yet I am still coping with what seems like artistic blocks.

I am struggling with negative self talk, I have set firm boundaries for time to sit and try and work...and here I am, writing and not making some kind of artwork. 

I have recently come to terms with:

 the reality of being someone with multiple hidden chronic diseases

My relationship with my parents has broken in a new way, and despite my kindest, most tender efforts my father mentioned this in therapy yesterday: "he and his wife have been "parented" by their grown children since his head injury and... they are in the middle of a falling out with their daughter"

I remember in my grief therapy many years ago, one of the things I tried to resolve was not being heard. Some of my earliest memories were feelings of always being dismissed and told I was being overly emotional or silly. I must need a nap or need to sit and think about what it is I wanted...I was often angry and crying from frustration. I learned that what it actually it was because no one heard me or listened to me. So I would scream and slam doors, and then get in trouble.

This feels a lot like that.

I told The Barren the other day, that I realize this is my role with my parents now. I don't have to like it, but I also know that my parents don't want to be accountable for themselves or choices. So if something needs to be done, and I mention that it might be a good idea to think about it, their response is: 

"well, I guess I'll do it because if I don't I'll be in "trouble" with her, so fine I'll make that appointment or not climb that ladder to sweep the roof"

My brother does not get this response.

It hurts and I mostly want to cry, but it won't change anything. My father will not remember the conversation a couple days later and my mother clearly won't either. So now, I just use a flat voice with conversations on the phone and simply deliver information about doctors appointments for my father, or make Mmm Hmm sounds, stating no words of agreement or disagreement when my mother decides or remembers to call me. At the end of each random call, I ask if there is anything I can assist with and am always told no. So I leave it there.

I am getting my infusions every 8 weeks now, and they are taking 3 hours. I have to stay afterwards because my blood pressure drops and makes the infusion nurse anxious. So I sit and wiggle my feet for a few moments afterwards and my blood pressure goes up enough to be dismissed. While sitting there, I snooze, take selfies, look at social media and text The Barren updates on how thigs are going. It is horribly boring but early bloodwork results show that it might be working.

I have been doing my yoga practice four days a week and meditation one day a week. All of my classes are heated, and half of them are weighted. I have upped my protein levels in my diet as I read that it is recommended for Crohns and Colitis disease. It has become quite a full time job and I am doing all I can to not slip into disordered eating patterns.

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

update

I finally made some artwork and submitted it Friday. I will know in the next couple weeks if something caught the curators eye enough to invite me to exhibit again this year. I was able to turn work in ahead of the deadline and have spent the last couple of days relaxing my brain and revisiting the idea of a more organic method of artmaking....instead of chasing a deadline.

I am proud of myself for giving everything I had to give to the project and turn in four brand new works for consideration.

Many anniversaries are in this week...

The 30th is the anniversary of my dear animal companion: 2020

One of my miscarriage's is the 30th as well

and then our Wedding Anniversary, 22years married, 32 years together

We are both so rattled, I have a feeling it will end up being a meal and a sunset drive. 

The Barren mentioned last night that he is really grabbing at straws for ideas...and I know what that feels like. We have been massively distracted with everything else life is throwing into our faces. We have had to make plans to travel for a family trip at the end of next month, to visit dying family. It will be like family gatherings of the past where we drive for the entire day just to get half way to where we need to be.....and those arrangements have taken all our mental energy. We are both quite anxious about it and the election is weighing so heavy in out minds and hearts...we are having a hard time focusing on anything other than just functioning. So our wedding anniversary has taken the back seat again...honestly, just spending time away from his office is gift enough for me.

I am feeling a lot

thinking a lot

and trying to stay upbeat for his sake

really we are just treading water.

Smiles and kisses above the water and absolute chaos below the surface.

                                     

Still

 It took the Barren 16 days to clear the virus....16 days of sleeping on a couch for me, 16 days of fretting and worrying, but we got through it and he even had a consult with a doctor about removing his gall bladder and in the end decided to keep it for now.

Meanwhile my parents have refused any and all assistance my brother or I offer to them directly. I say this because I still book and confirm all my fathers appointments "behind the scenes", so he is prepared for each appointment. He has started seeing a psychologist,  and my mother has pinned floppy hopes that it will "help him". I have become far more jaded and based on what he has refused to do ANY homework/self-work for all his occupational, speech and physical therapies...I would be VERY surprised if he creates the opportunity for himself to grow...but I would love to be surprised.

My relationship with my parents has been altered in a significant way. In fact I described it to The Barren the other day like this: it is like I have lost both my parents, but they are still here and I am left watching it all disappear each day in a new way. Like an extended period of grief and mourning. It breaks my heart in new and different ways every time I call them. 

Yesterday I acted impulsively and decided to drive the 40 minutes to their place and offer a CPAP pillow I had sourced for my father thinking that it might make it more comfortable for him and then he would wear his CPAP longer than just a couple hours a night. I hadn't seen my parents in well over a month and when I arrived and knocked on the door; it swung open with great force and my father was standing there, without a cane or walker hunched over and glaring at me. Then said hello, looked at the pillow in my hand and said what brings you here? I said I had gotten this for you to try...I was..., before I could even finish my short sentence he responded...NO, DON'T NEED IT. (he said these words in a short, loud and stern way) I started to show him the features of the pillow and again he said "no, I will not use it. Thanks though" and that was that. Like we didn't say much else after that.

My mother, peeped around the corner, said it looked like a comfortable pillow and that she was sorry he turned it down. I was interrupting their dinner that my father was microwaving. I had not even entered the house yet... I was standing on the front porch still...

I left them to their dinner and got back into my car....I felt so much. I felt so...I was glad I had invested so much in my fathers recovery, but it was like a neon sign that I was far more invested in his recovery than anyone else. That is where I am trying to heal from right now.

When The Barren asked how the visit went I said "Abruptly" 

I am struggling to get past all the trauma of the past three months. It has left me numb and uninspired and fumbling to find myself again. I have developed a new side effect, I am not sure if it is from the new infusion medication or stress but I am now learning about Burning Mouth Syndrome. 

I feel like I am falling apart; all my seams have come undone and I do my best daily to wake up and focus on anything other than everything else. My therapist use to refer to it as the " chop wood carry water" of life. Picking yourself up and doing tasks in an effort to keep moving and giving yourself time to do everything else that needs to be done so you have space to work on yourself and your thoughts.

The Barren is at his annual music week away for the summer and is having an amazing time. I am so excited he has this time. He is with his bestie and they are learning all sorts of new techniques and music theory from the best of the best. I literally could not be happier or more proud of him for taking this time for himself.

I am home solo trying to pretend I am at an artist residency....and make something. 

I have put film into several cameras and have shot some images...I have made some green developers and I hope to see if the pinhole photos I took today created any images. I have been feeding myself clean food, I have participated in a community garage sale, but only for an hour and a half, as the people who started coming freaked me out...hahah I have been writing down ideas and contemplating new materials. I am catching up on admin work for my website, etsy shop and wrote a newsletter announcing what the latest was.

I guess the whole reason for this post is that I am still here. 

I still have not gotten the virus, I still mask in most public spaces, even with glares. I am still waking up with a smile each day, even when my whole world is tilted and new things seem to gather around the edges. I still have a sense of hope that one day I will be able to travel again and feel lighter in mind and mood.

I do hope that if you got to the end of this post that you are doing alright, holding on to the edge of your day...finding something sparkling in it....because that little bright thing is meant for your to notice and hold.

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

Always Responsible

 I was sitting quietly in resting pose after a challenging yoga class and started to break apart what was bothering me the most. Like triaging my feelings and trying to make them make sense.

Mind you I have a few dishes spinning in my life and so I understand that feeling overwhelmed is a natural place to be; in fact expected. The Barren mentioned to me the other day that if he didn't know me and the "behind the scenes" reality of me, there is no outward sign that I am struggling.

I am the type of person who will volunteer if no one else steps up, I am the one who will snap into fix it mode for most anyone. It takes great personal restraint to not step into many, if not all situations, sometimes having to have a talk with myself justifying why I need to step back and not forward. 

If I don't do X or Y the world will collapse and it will be my fault. If I pick a place to eat and the service is bad it was my fault. If I don't buy the recycled paper it will be my fault that additional trees are cut down. I didn't triple check on that person, if they had a bad day it was my fault, I could have shifted their day, mood or feelings about themselves.

It made me wonder about not only myself, but why I am like this ? Why am I the one who is responsible for everyone?

Perfect example: this whole nightmare with my father accident and recovery. I knew no one else could/would step up to help my parents, so I did. Without a second thought I abandoned everything, hyper-focused my path for rehabilitation and got to work researching day and night. In all honesty, I was terrified I would not think of everything to repair what was broken and that someone would call me out on it; and claim I was a horrible daughter. 

When family, who was not involved in the day to day would come in with suggestions, I let them know that I had already addressed those things, they had already been accessed. Fearing that I had left a stone unturned, and a soft part vulnerable to being attacked, but I hadn't, I literally thought of everything. I fixed all the squeaky parts.

As of late, one member has a call into the same medical social worker that visited before and deemed everything done and there was nothing left to do. My mother told the family member it was fine to call, they feel as though they are "helping" in a way that makes things better for me. My mother is passive to this person so she goes along with whatever they say.  I told them "I invite you to call whoever you think might help them in a way they would like to be helped" (not sure they picked up on that nuance of words)

When my dear friend was hospitalized and told she needed a new kidney and a heart, I immediately thought, can I donate mine? I mentally volunteered mine, before researching if it was even possible with my chronic illnesses. Turns out I can, but I am at deadly risk of infection and it might not go well for me, the donor and I need to stick around to continue to care for the others. So I sit in that sadness of feeling useless and worry for her.

Most recently, family has visited and "checked" on my parents...concerned that my mother is not sleeping enough, not taking breaks, my father is not following directions, ignoring homework. I sat patiently and listened to them pick apart everything and in response answered each of their questions calmly and completely with detailed information about doctors, parental responses, therapies etc. No one has asked how I was, if I was sleeping, if I was mentally okay. Instead I just kept my head down and kept making lunches and transcribing doctors appointments and making new ones.

As of this last couple weeks, my parents have asked me to stay home. They want to see how they can manage on their own, which I think is great! I have set a schedule for them, held their hands while getting my mother (the driver) acquainted with where everything is, where to park, how to get back home etc...but this transition did not start smoothly and began with "don't come anymore". It was like having the door slammed in my face...I put that aside and respected space and time and choice of words and have stayed "away" except I still get daily calls asking for aide in remembering calls, appointments and hearing my mother sound off and cry over the phone about how frustrated and tired she is of my father and his lack of motivation and desire to "get better"

Then yesterday, after 4 years of protecting ourselves....The Barren went to a Noah Kahan concert with our goddaughter three days ago and didn't wear a mask and he tested positive for Covid. I called and told my brother that I would miss an eye appointment for our father this week. He in turn told our parents that hubby tested positive and when she called she told me to be careful and then proceeded to start crying about my father frustrating her and how she will manage. I had just returned from the store in an effort to feel less panic from this virus and trying to think of everything we might need for the next few days, purchasing 10 at homes tests for us for the week. I have tested negative so far. 

Life seems to feel like a runaway train right now...or whack a mole, I'm going to try and see it like whack a mole, it is a funnier version and people usually smile when welding a mallet.

My oh my

* free writing to try and triage my feelings*

I have time at home today, my car is being serviced, as it now has 280,000 miles on it. I used to commute everyday to the town my parents live in and then when we quarantined I stopped. Now I am doing it again, most weeks. My father has graduated to out patient therapies, no more home therapy visits. 

So that is progress, but he still has short term memory loss and balance issues. I am there sometimes 5 times a week, sometimes three days so I can go to my doctor visits and get a yoga class in and cook and clean up my home...and if it works out, see and snuggle my hubby.

I set up my parents with all the visits for outpatient therapy which has them attending until the end of August, as well as a monthly membership to a non-profit that specializes in brain injury. My father attends in person classes for brain workouts, physical fitness and group support. My mother attends as well to watch and sometimes participate too. I have her set up in monthly peer support group and have paved the way for her to access additional resources for more therapy as well as respite care should she choose to access it.

She has spent a long time putting herself in the back seat and as gently or forcefully I offer to assist her with getting her medical appointments up to date she pushes back and keeps things very close to her chest. So I struggle daily with explaining things over and over and over again to her. I am often her therapist explaining how things are not ever going back to how they were and that this is the new normal. She asks again hours later, like I am that magical fridge that you open the door to and new things appear. As you would imagine this is exhausting, heartbreaking and I have put all the rest of my life on hold while I set this all up and get it rolling into place. 

My father doesn't do what my mother hopes for and my mother doesn't accept/realize this is not going to magically change. So instead she just keeps her teeth locked into her desires and refuses to listen to the present, instead she hyper focuses on things he is doing "wrong". When I was there last they were bickering the whole time, and it was beyond exhausting to witness. 

My mother was mad at something my father couldn't answer and he was confused what he had done wrong and then eventually was just confused, as he had no clue what was making my mother mad and snappy at him. She in turn felt that he was avoiding the topic all together. My mother has two senior cats that are 17yr old and are having accidents from time to time. My father suggested it was time to "get rid of them" my mother was very hurt by this (understandably) but didn't consider the source and so she just held it as a personal attack. She told me she held her tongue and didn't say what she was thinking which was "maybe we should get rid of you too" So that was a right move on her part...and the day progressed like that. They attended a peer group later and my mother said that my father had a great time and he told me he had a great time and then when asked the next morning, he said he didn't. And so it goes over and over.

Meanwhile I am feeling less and less visible. When my dad finally came home from rehab, we were focused on his safety, and we still are, but are starting to relax a little, but as this was all starting I got an avalanche of news that I have been carrying like a heavy load:

My aunt and uncle were both diagnosed with cancer, the woman I used to nanny for who I am still very much in touch with, is now an adult and back in the hospital awaiting a heart and kidney transplant, my medicine had to change because I developed a complication to my Crohns/colitis, one of my closest friends decided they were developing feelings for me and couldn't bare that I was married and cut off talking to me and asked me to not reach out to them, a fellow woman I mediate with for the last few years had a her breast removed because she has breast cancer and is starting chemo and yesterday I was laid off from my job.

I have not been able to go to yoga regularly, make artwork or spend real quality time with my hubby. My birthday came and went with not much to define it from one day to another. I  got a card from hubby telling me that he couldn't think of something special to do and that he loved me. When I mentioned how I was feeling to a doctor I went to see one for ear pain, it was just accepted as this is life. We are all overwhelmed and sad....get used to it. ( I mean it felt like that, I don't remember what she said actually...accept to not offer much)

My bestie flew into town to help her mom organize some things and we had a hot 18 hours together. I drove into town to get her, arranged for us to have a massage and lunch and then drove her back to her moms. It was nice to see her, but the whole experience was a lot, and honestly not very relaxing for me.

Is this the new normal? Is this what I am needing to fold my mind into for my life now?

I am spending today writing out these thoughts in hopes to release some of them and free up some mental space to rethink about what I want and how to hustle some new gigs that could land some cash into my hands.... mostly I just want to run away. I feel badly thinking that I didn't sign up for this and how deeply sad and invisible I feel.

Tumbled

 

On Feb 25th while showing off his seashell collection to a friend, my father tripped on a brick in the yard and fell, face first, into the concrete patio. He knocked himself unconscious and it took 5-7 minutes to be revived. Rushed to the ER via ambulance, it was determined that he had a brain bleed and was admitted to the ICU with a traumatic brain injury.

He spent 3 days in ICU and then an additional 2.5 weeks in rehabilitation regaining cognition, balance and speech (from brain to body). He was released home on Saturday of last week.

My life has forever been altered and spun out of control

With the exception of two Saturdays (which I stayed home to cook all day) I have been with my mother, as companion, advocate, translator, form filler, appointment maker, therapy coordinator, sounding board, personal chef and coordinator. I am also the main contact for all family to check in and ask for updates and information.

My brother made the 911 call to paramedics, after getting a call from my mother. He maintained calm while trying to revive our father. We work as a team. He has taken on all home alteration tasks, including ripping out and refurbishing their bathroom to make it safer and more accessible, opening walking paths in the yard and adding a rail to the front step, and any home repair that has arisen in the meantime. He is a business owner, so also has maintained his insane work schedule while also trying to be a parent.

We are both still traumatized from our past, when our grandparents lived with us because our grandfather had ALS and then our grandmother developed dementia.

We text each other all day, keeping things wide open in conversation. 

My hubby has held down the fort here, mostly. I have on many a night come home to laundry, meal preparation, and home tasks that were left for me.

I am constantly telling my mother:

People do what they can do. sometimes it is what you hope for, other times it will look very different.

Today I was the villain:

I told my father that he will not be able to renew his drivers license 

I read him his sleep study that showed he had severe sleep apnea, and needs to wear his CPAP with every nap and overnight sleep-time

I was the one who insisted he brush his teeth this morning, and then through my exhausted eyes handed him the wrong tube and he brushed his teeth with anti-itch cream.                                                           (it was remedied, and laughed about, but that doesn't change my mistake)

My father has seriously impaired short term memory now, as well as his balance, and he needs to walk with a walker. He doesn't remember how many times a night he gets up to pee, triggering the bed alarm so he can not go solo. I did an overnight shift on his first night home, staying awake all night to accompany him to the toilet and ideally allowing my mother to sleep, but that proved futile. My mother is a lite sleeper and was involved every time and my father is still confused why he needs the walker or company. He just doesn't remember. It is frustrating when he is angry at the attention, because he doesn't remember the fall or the rehab or the reason he needs a walker or wheelchair. He doesn't remember if he had lunch, or if someone visited him that day. He didn't remember a phone call he made to my brother an hour later.

I am glad to have the flexibility to help, honored in many ways to advocate for them, but I am losing myself in the process of helping and it scares me. 

People do what they can do. sometimes it is what you hope for, other times it will look very different.

I am a zombie.

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?

Fear and sadness

***trigger warning-FEAR HATE****

Stream of consciousness writing

I am trying really hard to keep my shit together. I feel like it is harder than normal.

I am shocked and terrified, these are the closest words to wrap around the unthinkable... by what has happened in Israel...and the response that will continue to punish the innocent people of Palestine.

I ingested too much news, a thing I haven't done since the election.

I can't read accounts, I am dizzy and sick to my stomach and scared...I haven't been scared in a long time about being Jewish. The anti-Semitic chants, and behavior and actions and silence in the face of it all is a lot to try and process.  

I used to have nightmares on the regular as a teenager of SS soldiers busting down my bedroom door while I slept, while I hid, while I shook...I'd awake in a sweat and was too afraid to share what haunted me. Maybe it was generational trauma...but it changed me. 

I have that same fear today, I read something about a day of death to all Jews tomorrow. I told The Barren that I am frightened and that our door is marked so we are extra easy to find. I sound insane, but it is a real fear...

I have my first real artist talk in a major city Saturday, and I am trying to prepare for it, but I am frightened...I want to be professional and brush aside fear, so I am writing here in hopes to unload some thoughts and clear my mind to think more clearly.

I feel lost, and confused and scared and unsettled.

I went through my jewelry this morning and found my childhood star of David, I used to wear it a lot when I was younger until I got comments and questions about my Jewishness. I am far from a practicing Jew, but have always been proud and aware of my Jewishness and how complex that was.

Today while making a medical appointment, the person asked where I was from to have such an unusual name...I said Eastern Europe. It hit hard.

Today I am simply a human, a person trying to make sense of the upcoming senseless killing, the senseless hate, the senseless pain for so many people.

I have woken up multiple times this week and looked at the outside of my building fearing there would be hate graffiti on it...it makes me feel insane...it is like all my hairs are on end...