How to live hasn’t been something I have struggled a lot with. How to find time t0 do all of that living seemed to be the question. This week was the first time I felt like I truly fell down. I fell, and am nursing my hypothetical bruises. The bruise has branches up around my heart where they sit. Dark veins, telling me to give up, I don’t want to give up, but it murmers in one tired ear while my fingertips brush it away.
My entire life I have battled with a deep depression. The voice telling me I am not good enough, I will never be worth anything, why do I waste my time trying?
Mike helps me keep my head up, but weeks like this where I have no control and I am so weak – I just start to drown.
Thursday after I got home from my intrathecal chemo I started to have a fever unlike any I have ever had. I sent Mike to buy thermometers (ours was wrong I swear). My mom brought a glass one. Between the 3 they said 102 to 104 degrees (our old one said 97.1). Mom threw me in her car and took me to the ER. After a few hours there I started to get delirious and didn’t know who I was, where I was or what was going on. They did transfer me to the Huntsman ICU (I kept begging, you get more hands on care and this felt relevant to my treatment).
Every morning and evening I would max the thermometers. 43c – which is somewhere around 105.8F. Soaked in ice and on ice blankets with chattering teeth I cried my eyes out begging for relief from the cold. Eventually they learned cold rags removed heat, cold blankets were stopping me from circulating it out. My MRI showed meningitis, my cultures came back negative. They decided that I had chemical meningitis – caused by my intrathecal chemo. Treatment for that = steroids. Steroids would have been bad is we hadn’t ruled out the other kinds of meningitis first. We started me on steroids and lowered me back to one major antibiotic. They offered me the choice to go home and come in and get the antibiotics. I had a PET-CT and an appointment to pull some more CSF so I decided to go home. It is exhausting getting woken up nonstop and having no say on anything you can do. I started to be able to eat food the day before I left too. A whole week, no food and the smell of food made me puke.
While I was in the hospital I also decided that my body was telling me that Burning Man is a no go this year. I want to live, but that isn’t how I want to go out. I sold our tickets before we left the hospital. It was bitter sweet, all that work to get them, but I was told they were going to a good home.
So now I gave myself a tough goal. Burning Man NEXT year, and I have to be healthier than this year. I am boxing my costumes and they will sit where I can be reminded that I have GOT to do this.