Tuesday, July 13, 2010
Well, I should be doing the work that I promised to have done by 5pm today. Instead i've been flipping and flopping around, scheduled some doctor's appointments, responded to emails, talked about doing work, thought about doing work, actually did SOME work this afternoon, showered, did a load of laundry, attempted to stay positive, checked my bank account, avoided the mirror, left the house with head held high to buy first iced coffee in a week and a half. I think that took a lot of courage on my part actually.
I gained 30 lbs in 15 days with no change in diet what so ever. Let me tell you, quite a fucking experience. On June 21st I weighed 165.5lbs. On July 6th I weighed 188lbs. On July 7th I weighed 195lbs and that's where it's stayed. A steady 195 lbs. I know it's "fluid", I know it's because my kidneys are malfunctioning. I know it's edema. But I can't help feeling this incredible sense of guilt, like I want to be wearing a sign explaining to people "look, I'm not lazy and I don't sit around eating bon bons all day long - I eat organic sustainable really healthy food. I do yoga! I meditate! I've been taking my medicine! I've been going to doctors appointments. I eat almost no sodium. I already had edema, although it was getting better. I'm not smoking! This isn't my fault!" Ah, so fucking sick the places my brain goes. It's just so uncomfortable and sucks and i've turned into a frumpy person I don't recognize overnight and my clothes don't fit. Bitch bitch bitch.
I was hospitalized all last week. I've started cytoxan ( IV C H E M O - Duh duh duh) to treat the underlying kidney function decline. It's a six month course of treatment once a month. Actually the side effects have really not been bad so far. First couple of days were a bit rough but completely manageable. I'm not going to list my fears about the side effects because I don't want to give them power. Silly superstitions but whatever. I have AMAZING people in my life and feel ridiculously grateful. It's insane how loved I am. It's SO hard for me to talk about my health and not just put on a brave face. It's SO hard for me to be real about it and to ask for help when I need it. My friends and family do not judge me. They are constantly just there, constantly reminding me that my fears are completely unfounded, constantly reminding me that i'm loved and accepted for exactly who and what I am - all of the baggage and all of the good, all of the everything. It helps when i'm having trouble accepting myself.
My first treatment was last Thursday in the hospital. They pumped me full of iv prednisone, 500 mg for a couple of days. I'm now taking 60 mg of prednisone daily and i'm trying to just trust in the process. I'm in the middle of a pretty severe flair. This is all for a greater good. This is to get this into remission and preserve my kidney function so that I can live with less instability. This is to avoid dialysis. This is so that I can not feel sick when I don't even know i'm feeling sick because I've gotten so used to feeling sick that it's just become status quo and I just make allowances. This is so that I can live. It's pretty simple and cut and dry.
As hippy or whatever as it sounds i'm really trying very hard to find and remember my internal grounding because my external body just isn't doing it at the moment and my brain feels fuzzy and strange and not at all like my normal brain. Ah, the existential dilemma! Such a strange thing this life is. Just because I'm rambling, I questioned everything that the doctors and nurses were doing, I thought they all hated me, we discussed the state of western medicine and health care, I cried a lot and was really the worst I've ever been in terms of not being "nice" in a medical situation but at the end of my stay they all came around and gave me hugs and private and personal notes and I don't know, it was really touching. I still hate hospitals though. Blah.
Posted by butterfly girl at 10:04 PM