Baseline

**Brain dump-trauma** 

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

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

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

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

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

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

********

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

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

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

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

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

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

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

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

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

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

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

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

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

So that was last night.

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

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

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

Kindness does matter

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.

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