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*

Stagnation

 

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

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

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

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

I have recently come to terms with:

 the reality of being someone with multiple hidden chronic diseases

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

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

This feels a lot like that.

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

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

My brother does not get this response.

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

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

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

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

update

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

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

Many anniversaries are in this week...

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

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

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

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

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

I am feeling a lot

thinking a lot

and trying to stay upbeat for his sake

really we are just treading water.

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

                                     

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!

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