Cold and blustery. Intimidating on the surface as I start immunosuppressive therapies tomorrow. I just needed a day to dust myself off, get back out in the world, see beauty and have fun. I was not disappointed.
Maui took me to Cleveland’s Botanical Garden for ORCHIDMANIA and a butterfly release. I was not disappointed:
This was promptly followed by an evening at the casino hanging out with my secret identity where I was reintroduced to an old flame, spending money as entertainment!
We even hit a Red Robin up on the way home for burgers, bottomless fries and bottomless root beer floats. YUMMM.
The point is, I’m so grateful for today. It may the last day I’m able to get out and walk amongst the living for a while due to the immunosuppression, but Maui was determined to show me a good time. We got a little crazy at the casino.
There was lots of smiling and laughter. My heart is full. That is all.
This week while inpatient, I learned that Im still perfect even when Im fucked up because Im being myself. I was able to reach out and make deep connections despite intense personal suffering and I was told directly of it’s impact by a handful of people. You may think, ‘only a handful?’ and while you may be right, to meet people where they are and love them exactly as they are, unconditionally, I find is hard work that not all humans are capable. It seems to be my superpower.
Had a complete meltdown in my doctors office this morning and in an instant, I had a plan to die and knew I’d never make it home if I left. Sitting in that room, sifting through the past month’s tests and prescriptions, hearing that staying the course is the only way through. I told her that I felt overwhelmed emotionally and was physically immobilized. I can’t be poked anymore, tested, gnaw at my nails awaiting test results while my vision sporadically leaves.
There’s just no words to describe how weary I’ve grown. Yes, I’m a strong woman, but this appears to be my tapping out for the time being.
Now, I sit in an emergency room a few floors down from my doctor’s office with a 1on1 nurse. I’m still in pain. My circumstances have only gotten worse by choosing this path to take care of myself.
I feel complete hopelessness. Everything feels nihilistic.
Just hold on. We’ll see you tomorrow.
This past week proved challenging and there were both sweet and sour unexpectedly and simultaneously.
Valentine’s Day was low-key due to my own limitations, but in the end will be more dear to my heart than most any other before. I feared for my life and wanted to surrender to death at all once, due to uncontrolled pain which anguished me both physically and mentally. I hoped for my future relationships while sulking in the loss of others. There was both confusion and clarity. There were moments of bravely being vulnerable, bearing my soul and asking for help, while wanting to run away and hide from everything and everyone.
I dared greatly, but not yet all the way. Not because I can’t go there, but because there is no where to go, nor anyone to go with.