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.

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.

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.