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...

Published

 

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

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

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

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

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

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

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

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

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

You can read more about the book: HERE

Book name: Infertilities: a curation

Memory of loss, and a little growth

**trigger warning: miscarriage** 

Today marks the anniversary of my final miscarriage.

I wrote about it HERE when it was happening.

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

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

It just was

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

They never got big enough to ever know completely. 

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

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

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

We are the broken but not lost

Bread was my life

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

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

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

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

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

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

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

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

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

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

*I am having a small pity party*

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

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

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

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

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

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

so see if it tastes okay.

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

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

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

Mind you, I am a creative woman, and 

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

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

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

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

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

What would you pick?

Gigglemug

Talking about process in gallery
 

So the Exhibition opened and I attended the artist reception

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

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

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

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

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

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

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

It is a real gift of time and validation.

*Gigglemug

“An habitually smiling face.”

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

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

I am paralyzed with choices...

so many choices.

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

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

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

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

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

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

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

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

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

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

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

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

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

ALOT- yep I meant it like that

TW **pregnancy talk towards the end**

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

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

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

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

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

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

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

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

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

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

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

from Allie Brosh

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

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

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

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

I guess it is another alot.

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

Birthday day

 

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

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

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

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

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

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

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

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

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

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

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

so that is a plus 😀

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

Take annual nude selfie ✔

buy myself flowers ✔

make a yummy cake ✔**

enjoy a cuppa tea and a sweet ✔

paint nails

shoot some film ✔

wear something that makes me feel good about myself ✔

laugh ✔

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

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

it was my birthday Tuesday and I survived. 

**cake recipe**

Real estate

 

© The Barreness
A crowd gathered around my work on display

There is nothing to complain about...

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

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

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

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

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

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

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

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

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

It is exhausting.

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

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

Thankful in many ways for it all

Self-awareness

    Joan Brown Painting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Krampus

 

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

Big Flamboyance

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

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

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

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

Om tare tuttare ture mama ayru punye janana pushtim kuru soha

White Tara healing mantra

*****

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

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

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

Forked

 

I'm exhausted

I have made it to the other side of the constant testing, I think.

The harrowing MRI turned out fine, nothing bad found, no new information.

So for the record, these MRI's are crappy ways to spend $100 at a time.

anyways, that part seems to be done.

I had my annual check in with my GP physician yesterday, I was assigned a new one.

When she entered the room she had a long list of notes on me as she had reviewed my record...kind of.

I spent most of the appointment watching her chart my current situation.

She asked a couple questions, I didn't have to have a pelvic because another department does those now and when she started telling me about my dense breasts, I told her I pay outta pocket for those ultrasounds too. I was overwhelmed...

I do know that at one point I said that "this was easier than my decade of infertility"

 Between you and me, I was still quite overwhelmed and feeling traumatized.

She stopped everything, looked at me, dead in the eyes and said:

Are you feeling underwater, do you feel like medication would help?

I was sort of taken aback, I think mostly by how close she was to my face, and the unblinking eye contact....but I said I don't think I am there yet.

She said things like: manage chronic illness and you are a menopausal woman 

If those weren't enough lovely gems from the visit she went on to tell me that she believes I have a secondary disease with my UC/Crohn's 

Hyperthyroidism.

She scheduled me for a bone density exam, I got a breast exam and then it was done.

I got dressed, got three shots and went to my car to cry, again!

I am spun...I am in a land I know, but all my markers are not familiar to me.

I go to all my appointments alone...I am not sure if a parent, lover or friend would have made this any better...but I know I am not okay.

In fact:

Stick a fork in me, I'm done.

So here I am a leftover, emotional mess.

Not knowing which direction to turn first.

I did have a good start to the week. 

I am not going to leave this post without sharing good things too.

I met with a curator for the yearly exhibition I am thankful for being invited to for the last 13 years. 

I was juried into it once again, and over the moon about that.

If that wasn't enough, the best part was that I got to show some work in person to the gallery and I will be in another exhibition in March! 

I am scrambling to make a lot more work between now and then.

That was a good thing.

So in between battling some serious self doubt, creative blocks and just straight up sadness I made something of interest. Something unique.

Now, if I can only stop making new diseases for my body!

Bound

 

You have got to be kidding me...

I went for an MRI this morning, the doctor is wanting to knock something else of the horrible list.

I have had MRIs before, more times than I'd like, but all seemingly necessary.

Today though, today I had a problem.

I arrived ahead of time, got in right away...and in a great shift, was not required to drink strange "juices" or volunteer a vein for glowing fluids.

Instead it was a strait "let the magnets take the photos" kind of MRI.

I went in, relaxed and un-phased and was in my double gown situation (one put on forward and one backwards to avoid any peep show) and sat on the MRI bench and was then told that I'd be heading into the machine head first and backwards....I was strapped in, arms bound at my side and elevated and inserted into the machine....one of the techs said..." are you okay" and I said "NO, No I am NOT okay...."

to which I was pulled out of the machine, and had to catch my breath.

I was having a FULL BLOWN PANIC attack

I asked to look back at the machine, so I could "confirm I was not going into a sarcophagus" 

I did a quick scan of what was triggering me and asked....

"Can I release my arms?"...it was allowed and one of the techs asked if maybe a towel over my eyes would help, I agreed to that.

I was very thankful for the kindness and I apologized a million times, to which they said all was fine.

I was asked if it was better, I said yes and back into the machine I went to complete the test.

It was a half hour of booming an clanking noises...breathing exercises and then I was done.

I thanked them again...got dressed and left. 

Shuffled off to my car and cried.

I was mortified, embarrassed and suddenly understood why horses are given blinders.

The less I could see, the safer I felt.

Counter intuitive to my years of meditation, I needed to massively disassociate.

Ostrich myself to not feel bound and threatened.

I had my second infusion this week, I had a breakthrough pain episode this week, I had a massive deadline this week and then this MRI.

Maybe I really needed to just hide, maybe all of this is overwhelming...

maybe I do need to escape.

My 20th wedding anniversary is Tuesday

We have a night at a local boutique hotel booked, but we are both at a loss.

We can't travel right now, we can't break away just yet, it is all in the air.

BUT, we are gonna have time together and in a different bed.

It is also the anniversary of our first miscarriage and a death anniversary of a beloved pet.

We were social yesterday, going to a family event to carve pumpkins, and then follow it with a Halloween adults only party...but everyone was talking about their kids and how it is having teenagers or younger kiddos.

The Barren and I just exchanged looks most of the time and 

nodded and said "oh my, yeah that sounds difficult"

These days have me mentally bound too.

I reminisce on the days that we had hoped for, the times that were supposed to happen.

Our G-daughter is the age of our star child, she is a physical reminder of passing time.

I adore this time of year, the wind down with joyful punctuations of celebration. 

Building our memory space for Dia De Los Muertos today, I placed a doll amongst the photos of family long gone. Marigolds line the edge of the space, a figurine of a black dog to guide the spirits, candles to light the way. Joyful calaveras to help with the celebration. I made a space to remember our beloved animal companions who are no longer with us.

After everything is in place...

Something magical happens in the quiet of the house, after we put out drinks and food for the spirits...the house feels full, a place of calm and filled with love.

There is no sadness, our minds fill with happy memories of those visiting.

Maybe I'll hide (stick my head in the clouds) for a few days with my sweetie, forget all that is required of me, forget all the doctors appointments, the state of the world, the general malaise and 

simply float in those unbound moments of what if.

Wishing you all an unbound hallows eve

celebrate your personal magic

because you ARE magical

Loading dose

 

Today I started my first dose of colitis/crohns medication.

I went to meditation this morning and wore a purple bra

(I am a firm believer that purple is a good luck color, well for me it is)

The nurse is nice and will be my nurse from here on out. 

We got the baby question out of the way right at the start with, 

"do you have any children"

to which I said, "no we don't, we just have each other"

The infusion center is in an allergy clinic, so there was a large group of people there to get allergy meds, crying babies and a lot of commotion.

The Barren came with me, and although he looked away when the needle stuff happened 

he was my solid dude 💓

Todays dose is called a loading dose, as they are loading a smaller dose today and then in two weeks I get another dose. I will be monitored for a bit afterwards to make sure I don't have any reactions. The another dose in 6weeks and then 8 weeks...and then I am on the schedule of every 8 weeks.

In between I will be having blood, stool and scans to monitor progress.

The medicine is designed to specifically target my gut, but it still makes me immunocompromised.

I will continue my vegan gluten free lifestyle, for life.

After the infusion we raced home, because The Barren had a work call and then the doorbell rang...

outside my front door was a man holding a huge arrangement of flowers.

My sweet Barren had a bouquet delivered.

The message read:

"this is one crazy ride, but I am glad I am on it with you"

💓💓💓

more tears, but also smiles

We close our eyes

A Woman is Supporting Another Woman, Who has fainted upon Reading a Letter (1807)

Christoffer Wilhelm Eckersberg (Danish, 1783 – 1853)

 I start my infusions tomorrow.

Last Wednesday I got the call that all was set into motion. Since that call, the date has been changed the location has been changed and I have learned the name of my nurse. Plus made appointments for several other appointments and tests that need to be completed.

I have also rushed a friend to the ER 
and dealt with many stressful situations that comprise a life.

I have shared the information with my bestie, my brother, my meditation teacher, my massage therapist (boy I sound quite affluent) but not my parents.

I am having concerns with sharing it with them until after my first session so I can answer all the abstract questions my mother will ask and that way I can still feel a micron of control until then. Also my father is having some memory issues and the last thing I need is a daily call asking in a childlike voice " how I am feeling" when all I want to is to feel strong and powerful and capable.

I told my bestie that I don't want:

" the last thing I want is to be a willowy Victorian woman 
wasting away in the corner who everyone treats with caution"

I am now trying to get used to the day being peppered with medical calls...all of which seem to send a wave of chaos and panic through me and my instinctual reaction is to run....

leave the house, do anything else than what I have to do.

I have managed to make a couple things, and although it feels like pulling taffy, and that it is a steep, steep incline; I am seriously determined to keep on keeping on. 

I have to see the lifestyle I want, instead of the life that someone else thinks I should have.

I sound like a verbal vision board...

I clearly am doing anything and everything in my power to normalize this WHOLE experience.

The Barren is coming with me to the first infusion, because after asking, the nurse said he could come to the first one. 

I have also started a visual for my mantras:

I am a boat on the water, bobbing on the surface.

No water can get into me or sink me

 I can ride out each wave with curiosity and calm.

This is a whole new world...

I am really just guessing at shit now