Like being stuck watching an awful sequel to a movie that you never even wanted to see in the first place, my Lupus is back. I got the news late last Wednesday night. And after five days of sleepless nights, I took this to bed with me and finally slept. I slept all night through. But it was really just a restless sleep. I woke up early. I woke up thirsty, parched for sleep.
I tried to meditate. Tried. I could not focus on my breathing. I could not turn off the what ifs, the how comes, and the general sense of despondency that populated my mind. So instead I walked. I tried to take in the sights of the old city section of Chiang Mai. Tried.
All I really could do was want to fast forward time to the time I had agreed to call my doctor. I needed to hear what my options were. I needed to hear him tell me this was beatable. That remission again was around the corner. That he had misread the results.
I need/ed what is clearly impossible.
That basically sums up the six word memoir of my life.
I wanted to eat, but my stomach was a mess, so I opted for a passion fruit juice and then to just eat the minutes, like a glass full of ice chips, till I needed to call.
When I finally got off the phone, err skype, I could not convince myself to get off my bed. I laid listlessly there all day. Flipping between the 8 bad English language TV stations available to me. In fact, I did not even take a shower till 5 PM when I realized I had to get up to go to dinner with a friend. Just listening to the synopsis of what came next was too damaging. My doctor recommended that I combat this new development with Adenosine. Let me rephrase that, my Nephrologist thinks I should take Adenosine. Adenosine, which will tank my GFR score, or you know destroy all the good I’ve done for myself and my kidneys over the past year.
So, yeah, as you can guess I am less than happy about this.
But before that begins, this morning I started to take Tibetan medicine from my doctor in Mcleod Ganj. I have two weeks worth of pills — and some serious dietary restrictions — to take before I have my next blood test, to see if they can control the rising proteins.
If not I have to decide if I want to leap off a cliff, where my GFR numbers seemingly will fall faster than me, to help correct this. My doctors words: “If we do nothing, they will likely fall faster,” well that and the lupus would metastasize and my chances of becoming the “angry me” again grows exponentially. I can not take Prednisone, which would be the ideal solution because it is what ate my bone and forces me to use a cane. So I hold out hope that the Tibetan meds work. That they can control this and while the Lupus will remain in my blood, it will be contained.
My doctor told me not to get my hopes up for going back into remission, as if the chemo treatment could not ensure it, the chances of it happening through some other means is just not very good. So containment is the best possible case here. And to be perfectly honest, I would be thrilled to death with that.
Also, I am not at all disturbed that i would be thrilled to death with containment, or you know an official American cold war policy that was both an extension of the myth of Manifest Destiny and tied up all the isms & phobias (sex, race/homo, xeno, etc) up in a tightly tied bow, shook them like loaded dice, making sure none came out. And those that did, well a certain McCarthy had an idea where they could go in the states and a Marshall had ways of ensuring US hegemony abroad. Yeah… not disturbed at all….