Who is that?

Recently when I look into the mirror I do not often recognize the person reflecting back at me.

Not in an actual I don’t know who I am kinda way, but an unfamiliar way. I feel disconnected from myself in many ways, and like I am no longer who I thought I was kinda way.

When you imagine yourself, you get a mental image of yourself...and when I catch a glimpse of myself in a reflective surface I am often surprised who is looking back. 

The Barren and I attended a cousins wedding on New Year’s Eve, it was lovely and romantic and the first time in a LOOOOOOONG time that we have had plans on new year’s. The newlyweds are soo deeply in love and it was a beautiful thing to witness. At one point I said to myself, this is happiness, this is joy that you are feeling...it felt so different I had to assess it in myself.

My parents and brother didn't go; my parents because they said it was too much fuss, and my brother because it was a kid free event and he didn't want to leave his home alone on new year’s eve. So the Barren and I dressed up and went and every person I saw asked about my parents and why they were not there. It was hard. I was trying to treat the night as my vacation, my get away for 24hrs. I told that to The Barren and he then understood that I haven’t had the chance to getaway...from anything! So as he watched person after person ask about my parents he saw me. We took photos of ourselves dressed up and smiling, the rain that night made for a chilly covered outdoor wedding and the music was insanely loud, so loud I had a sore throat from screaming all night to talk to anyone. As we left, before midnight, we relished in the quiet of the car and the sound of rain on the windscreen.

It is a strange time we are living in, and being here in the states makes it even more surreal by each hour. I am heartbroken and exhausted and constantly worried about something or another. I am trying to practice radical acts of joy and find things in the day that I can celebrate. I feel lonely and sad a lot more of the time, and despite my activities, I am often solo as the weeks pass. Sometimes I like the time of solitude and quiet, often times it weighs heavy on me and I feel invisible until I am pulled from beneath my cloak...

Example: I was followed in the market yesterday by a man that wanted to tell me how he liked my hair, and admired that I was "letting it go"...he had followed me through to store to tell me this and I am sure if I had said anything other than "um, thanks" he would have continued to engage in some other unpredictable way. I was left looking for ways to be in a more people dense area, making sure I wasn't alone, feeling angry that this creepy guy "approved" of the way I was presenting myself. I texted The Barren and told him I felt super icky from the encounter... and I was really angry. This was only a few days after a man murdered a woman in her own car, and the nation saw. Men are unpredictable and scary.

I am on edge, we all are.

For me, this week had beat me up pretty impressively.

I am involved with my parents and their medical appointments. Once again, I waited to be invited and asked to assist, permission is an important part of trust.

Last week was a lumbar puncture and then this week a meeting about the results with a new neurologist for my father. He had become more confused as of late and the MRI showed fluid on his brain, so that was drawn and the new doctor met with us on Tuesday. He was late, and apologized about that...my father was clearly freaked out because he didn't act out about the wait (they were late for his lumbar puncture too and he was repeatedly slamming his walking stick on the ground in a Gandalf "you shall not pass" kinda way. I had to talk to him like a toddler in the common waiting area explaining how it was disrespectful and how there were others ahead of him), but was quiet on the exam table. My mother was quiet too but angry (about her whole world being turned inside out) next to me...fear presents itself differently in us all. 

The doctor took his time and explained the reason for the lumbar draw, the results of the MRI and what he saw on the spinal fluid draw...and then ordered a blood test (a new one, for Alzheimer’s markers) we talked about gait changes in my father’s walking and concerns about his developing confusion and the talk was a mix of science terms and clear phrases which I followed along with but my parents were clearly overwhelmed by, so I am glad I was there to be the "decoder ring" for them. Afterwards my mother kept saying "you were really good" in that I understood and asked questions as they arose with the doctor. Neither ot them do that.

I was masking well, really well...because what they didn’t know was that I was battling some serious abdominal pain from what I thought was a flare..I had taken liquid antacids down the street from their home...and I was horribly uncomfortable. I had awoken with the pains and soldiered on to make work that morning in town before picking them up and shuttling them to and from the appointment. After the appointment I left their home and was ready to release the emotions of the day when I passed my sister in law on her walk around the neighborhood, I buttoned it up and spent the next hour chatting with her before heading back towards home an hour away.

I didn't get to cry, I was too tired.

I was greeted by The Barren, who had a bad day and I told him, I was just gonna have a thin miso soup for dinner and proceeded to make my dinner. After sipping the soup, I collapsed on his lap on the couch and fell asleep.

I am exhausted and emotionally drained, I feel like I am walking around in a cloud. Not really here or there. There has been so much grief in my body for the last two years.

Yesterday afternoon, I told The Barren that as much as I would like to ignore that I have an autoimmune disease, I am getting punched in the face by it over and over demanding attention. I think I am grieving, not just the state of the world, but my body, my family, and my dreams for myself and my life. It is so frustrating to have ideas and desires to do things, but have less than enough energy to do them. To see them so close, but be unable to maintain the stamina to see them through. I am trying to be graceful with myself, but it is becoming harder and harder and I wonder "who is this?"

My own doctors meetings start tomorrow to talk about my latest results. 

Ideally I can have a good cry soon, like a palate cleanser

A friend mentioned this writing prompt and I found it timely

*Keep your chin up buttercup*

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

Bog Witches

Melancholy is my new normal.

I am moving slower, staying near home more, being okay with being alone more.

The Barren is in the middle of all his trips for the year; so I am doing my best to center myself with alone time. Art focusing, reading books, talking to the cats, yoga and growing food. 

I am actively trying to be present, but it is like living in a surreal state, where this new world is unfolding around me daily/hourly. It is hard to still wrap my head around how much has been lost, and how much is still being taken by this Sherbert Pervert and his minion of cowards.

****

I took the train to meet The Barren after his week long conference so we could drive home together and selfishly I could spend time with him from the very moment he was freed of his work commitments. The train took 6 hours, I got off, hugged and kissed my sweetie and then got into his car and we started the drive back home. I have done this a few times because I can't bear the idea that he would have to drive home, exhausted alone. So I am there as an optional driver and company. This year we stopped at a "plant butcher" so I could have a meal that I didnt have to cook. I tried legumes for the first time in a long while and although I was terrified about how my body might react, it did alright! I had the farts and a little bloat, but zero pain and I was happy about that.

A party this past weekend had questions about how I was feeling and it sat strange with me. Afterwards, I told The Barren that I don't want to talk about my health in social situations anymore. There is so much attached to it, like an oozing barnacle of attached emotions. In the end, it leaves me feeling badly about myself and I don't want to feel that way anymore. He heard me and saw what a spiral it sent me into. So hopefully that will be something of the past for now.

It felt empowering and scary to set that line in the ether.I am proud of myself for doing it.

***

                My car has driven to the moon and then some, I have diven it over 290,000 miles.
                                                            The moon is 238,900 miles.

While I was picking up my car from the mechanics after a routine oil change/inspection, I was joking with the woman who runs the office for her brother the mechanic (much like my work situation).  I told her that I had worked out really hard that morning and I was afraid to sit in the provided chair, as I might have a really hard time standing again. We joked about aging and new noises our bodies make and then she said, 'We having a meeting of bog witches the first of each month at a local divebar, we call it "bookclub" but it is mostly a group of older gals sitting and making community. Sometimes we make protest signs, sometimes we just bitch or learn about native plants. If you would like to join us, this is where we meet and you are welcome swing by and hang out with us"

I felt sooooooo coool! Like the coolest person in school invited me to sit with them at lunch, because I was unique and they liked it!

Needless to say, I will battle my introvert tendencies and do my best to join their next meeting.

It was so flipping cool.

Then I paid my $200 bill and left on my broom, that looks like a well loved and cared for car.

Rollercoaster of Love

 

I am still here, still above ground.
This post does ramble...
I am a swirl of thoughts feelings and moods in every hour of the day. 

I am still in a guinea pig level of this new medication...but I am cautiously hopeful that things might be working better. I haven't been in an ER since May and I count that as a win! I have locked down my diet even more, even though having an auto immune disease means that the food doesn't really play a part in the inflammation but can contribute to irritations. So I am experimenting even more on taking things from my diet, or massively limiting them.

It is exhausting and makes having tea with a friend VERY challenging. I am there sipping water while they eat or drink beverages I once enjoyed. They try and not make a big deal about it, but I see their looks, wondering if I eat at all...or if I am hungry or...who knows. 
I am trying to make it a practice of being present in a conversation and present with the person who has asked to share time and I choose to share time with as well.

 Honestly though, at times it is very hard to not show how I really feel about how scared I am. How I constantly fear that I might eat something that could send me into a ball of pain. How they might see how scared I am to eat anything I haven't made myself...how hyper cautious I am about everything, how this has massively changed my relationship with food, my body image, my self-esteem and wellbeing.

I am back to assisting with my parents in person. I was invited back to help. I have maintained all the stuff in the background, but was refused when I offered to help take them to appointments or help by dropping off meals. So I started with shuttling my father to his mental health appointment and was asked to sit in on the session. Another therapist saw how we interact with my father and saw how challenging it is. My father is a performer, and so he is 100% on when he is around people other than family; presenting a different version to the outside world than is true making up facts. The therapist sees it thankfully, which is reassuring.

I also took my father to his annual wellness check and it was ordered that he needed a treadmill test. I took him to that, and I think it was a shock to my father that he wasn't able to last more than 2 minutes on the walking pad before his legs gave out. He will be returning to the test, but via IV dyes and stimulants to test his heart. It has been heartbreaking and beautiful to see this side of my father. Beautiful in seeing how vulnerable he is, it is a rare thing to be able to witness this side of our parents, so I hold it as a precious thing.
Each of these visits leaves me spent: emotionally, and I want to comfort myself, I do what I can to refortify myself. When he was in aftercare after his fall, I would eat a bag of harvest snaps on the drive home, screaming in between when tension was so high. Now, I drive in complete silence, no snacks are okay at this time....

It is a rollercoaster

I am rule follower, but I am determined to find a path that will work for me. 
I had two social meetings this past weekend and both left me so tired. I joke that the person who says yes to these is a different person than who shows up. I know it is super important to be social, and connect with people who are not toxic, so I push myself to go. I enjoyed both events but I was pretty quiet afterwards. I have found myself looking at people and wondering what it is like to walk in their life, eat what they eat, socialize like they do. I have found myself so much more serious and introspective. I used to identify with Tigger and now I am a cross between Piglet and Eeyore. 

Has anyone else been feeling like this? A shift in how you are interacting with the world around you?

The Barren has returned from his trip to Canada and he mentioned that the city he had his business in was light and vibrant and happy. 
I said "was it like to not waking up in a pool of existential dread every day?" and although we laughed at it, it was true.

Soapbox moment to the universe: I love where I live, it really is pretty and the kind beautiful people I interact with...but at the same time I absolutely HATE this government and everyone who is playing along, justifying it, validating it, supporting it and downplaying it.

I have been hunkering down and trying to find a bit of loft in my mind. Sometimes I get so caught up in the downward spiral of thoughts....other times it is like I am rollerskating around big holes in the road. Currently my garden spots are bringing me joy. I have a community spot and a couple guerilla spots around my complex that I have planted and they are all thriving and bright with blooms and food. I am slowly exploring art making practices that are new and interesting. I am practing yoga multiple times a week and getting closer every class to making my goal of 1000 classes done by the end of the year. Today was class 968. There have been some wins and I am celebrating them. 

My life feels like a rollercoaster for sure, but I am still trying to see it through love lenses,
No matter how cheesy that is.

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.