Scary monsters

 Boo! Sorry for my absence, but I have been a sick kitty. I have been struggling with severe gastrointestinal issues since Sept 28th. Primarily the result of my RA DMARD medications methotrexate and hydroxychloroquin. DMARDS affect people with nasty side effects but for me who already has super fragile GI health, this was second time this year it laid me out. (And before you ask why I take them, despite their nasty side effects, they have given me my life back as far as allowing pain/fever relief and more daily mobility.) This month has been filled with hospitals, inability to work or resume basic activities like eating and moving around. I'll spare you the details but ... whew! I have missed three weeks of work and hope to return in one more week; that is if my job still awaits me. 

Now that I am a bit better, I invited my bff DL to come over and do an art project for halloween with me. We let our inner child out and the theme was spooky ghosts and ghouls. We used a challenge prompt from  a You Tube art journaling guru. I usually do not create such child like and literal imagery but I felt that Halloween brought out a simpler child like style.We made the project our own through our interpretation of what was scary and ghoulish. So, instead of traditional spookies, I portrayed what is scaring me most intimately in my life: the inaccessibility of the medications I need to live. And the monsters in this scenario are the F-ing greedy, pharmaceutical companies and insurance industry. 

You see, cheaper DMARD medications like methotrexate are making me too sick; so I need to transition to biologics for my treatment. But biologics are sooo expensive. The latest biologics that boasts all the bells and whistles; the ones you see on commercials, can be up to several thousand dollars per injection. I need weekly injections. My doctor has applied for authorization and been denied by my insurance. Now he is going to apply for an older (not cutting edge) biologic called Enbrel. It is $1700+ per injection; again I need weekly injections. The methotrexate is really making me seriously ill so I need to transition to these biologics; but methotrexate (a popular chemotherapy drug for cancer) is so cheap, that is what insurance companies keep tell us to keep trying. 

So many hurdles to clear. First, I have to get my request for Enbrel approved by my insurance. Then I have to try to find a way to afford the weekly co-payment which is many hundreds of dollars per week. My only hope is to get an affordable patient co-pay assistance from the pharmaceutical company that makes Enbrel. I hope I qualify. So I began researching who makes Enbrel and how to ask for financial assistance.

And low and behold, I see both Pfizer and Amgen are both attached to the drug. Two pharmaceutical companies put out my drug? Then I came upon this article explaining how they joined forces to "rake in BILLIONS" in what was referred to as their "golden age" of biosimilars. Now, I know that pharmaceuticals give us life saving drugs. I know they have to recoup their money spent on R & D. But does anyone really think that they spent billions? The profit margin is so obscene, it is immoral! They know most cannot afford this medication they need, but they will help a select few (for public image) and screw the rest. Profits over people.

This is the rawest example of capitalist greed gone evil. It makes me sick, quite literally.

So, this halloween, my scary ghouls are pharmaceutical and insurance companies. In my drawing I fancied the pharmaceutical man in a fancy top hat, a la Monopoly money guy and the rich tycoons of past years. He carries a money bag and has vampire fangs because they bleed us deadly. The floating medical insignia is bleeding out, failing to live up to it's oath. And there are the poor patients. Ghostly and crying tears of blood as they succumb to their illnesses. Yes, yes, no masterpiece. But it felt good and I enjoyed making this reality tangible on a child like level. 

This halloween, may you acknowledge your ghouls and monsters and most importantly may you find collective ways to exorcise these monsters out of existence. It is long fight, but hey I do love me a good vampire slayer story! 

A room of my own

 

Published in 1929, Virginia Woolf’s A Room of One's Own is a important work of feminist writing. Woolf’s essay examines the educational, social and financial disadvantages women have faced throughout history.  It contains Woolf’s famous argument that, ‘A woman must have money and a room of her own if she is to write fiction’. I have a fondness for this book because my college boyfriend, P, gave it to me when I moved into the university dormitory. I was 'officially' starting out on my own; well sort of,  as my parents paid my way in college. But I was taking an important step in my development into a grown woman.

Four decades later, I still am drawing lessons from this book. 

Recently, I have gone through a creative blossoming; reclaiming my love of painting. But I was trying to work with paints, etc on my cramped desk space. I was making a mess of my computer and desk and I did not have space for my tools. This is not how an artist works. And I am an artist. I needed a real studio space. 

Now, I had a dining area that was mainly being used for coffee, morning internet scrolling, mail and medication/supplement storage. I had wanted to make that space an art corner for myself ever since I moved here 21 years ago. But my mom insisted that I needed a proper dining table, however small. Where would I serve guests at dinner parties? Where would I eat? It is the civilized thing to have. So, I caved in to her dictate of how a proper adult woman should live. But the truth is, I have never thrown a dinner party here, nor do I want to. And I eat all over the house, lol. That is not important to me.

So, I got rid of my table area and got a six foot utility table and I created an art space. It is rudimentary at this point. I use my parent's china cabinet to store art supplies. (Sorry mom) I have an easel and I invested in paints, canvases and paper. This is an unglamorous photo of the space I have carved out for myself. I am still working on it.  Like Virginia Woolf, I too believe a woman needs money and space to practice her art. I do believe my mom forgives my etiquette lapse and that she is happy for me. Now that she is in the spirit realm, I think she sees the bigger picture and  just wants me to live my own version of an authentic life. Her 'hija' makes art, not dinner parties. And I am thrilled with my uncivilized home that lacks a dining area. 

This is a detail of a larger self portrait. It captures the shy, self conscious baby lesbian I was in the mid 1980's, spending the night in a tent with her crush, CW. We snapped pictures of each other and I found this one of me she took. I look back at my younger self with tenderness and acceptance. It was included in an exhibition put on by the Broward County Art Guild.