Thursday, June 27, 2013

What a week!

I have pushed hard the last few days. I am up to my full dosage of Mepron. (Yuck.) Also, I managed to see two musicals in the last 4 days. Music, especially, live/loud is very difficult for me. You know when you go to a big scale concert and you can feel the beat on your chest/breastbone? It is like that, except for me, it feels like it pierces my chest and messes with my organs. It makes my squishy bits hurt. When that happens it becomes extra hard to keep tremors at bay. However, what is the point of fighting for my life if I don't have any living in the meantime? Also, being part of the theatre community, it is important to me to see my friends' work and catch up, no matter how briefly, after the shows. Huge shout out to the casts and crews of Rocky Horror and Death of Cupid! I love that I have talented friends. 

All of that on top of a very upset gallbladder, which is coming out Tuesday morning, has made for an extra painful week. Tuesday night had me crying in the fetal position for over an hour from the abdominal pain alone. Tuesday also brings the potential to have an appendectomy at the same time. My surgeon will be looking around a bit to see why my pain is so widespread in my abdomen. 

Because of the above, it has been extra difficult to eat solid foods. I am only getting about 1 solid meal a day. The rest is from juicing, and I continue to lose weight (not good). And to add to the difficulty of the situation, for Mepron (anti-malarial to kill the babesia) requires a fatty meal in order to be absorbed by the body. Angry gallbladder+fat= a hell of a lot more pain. Screaming out and crying to the universe sort of pain. It makes it hard to even drink water and I have become dehydrated and full of dead bugs I desperately need to get out. It is kind of a difficult thing. Take the meds to kill the bugs, but get too sick to deal with taking care of my body enough to keep from Herxing. 

At the same time, I have to deal with my usual symptoms. My hands and feet... suck. Deep bone pain. My skin burns with any touch. My neuro symptoms are just as exciting as ever! Yesterday, I had a few hours where I could only speak Spanish. I had years studying it and am mostly fluent, depending on symptoms of course. But, the same thing apparently goes for English. 

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