Something happened between now and when I left NYC, nearly a year ago. I am not sure of what it was, but I know it was/is destructive. I left NYC not just to see the world and the places I have always dreamed of seeing before it was too late, but also because I sought another option. I refused to see the five year sentence I was given as the only way. I was open to any other possibility. Another way. From countless medical professionals I kept hearing “you will not get better.” And while I can not deny that this was a huge possibility, I refused to give in to this reductive thinking. I refused to accept that this was the only way.
And I did just that. I found many things that have inhibited the further decay of my kidneys. I actually raised my GFR numbers, something my doctor told me was impossible. I refused to let his reductive thinking beat me.
Then over the past six weeks or so I forgot about the person who believed any of this. I lost my way. I got stuck in the silt of a swiftly moving river, with no way out and rising water almost overtaking me, as soon as even the idea that my Lupus may have returned. It crippled me. No wonder my body is failing me. I had gone from having faith that a solution may be out there, that I could find another way of living, to living an existence based on the very flawed concept of determinism.
I went from struggling to accepting, without even blinking. I gave into the notion that my prescribed path of dialysis and ultimate quick death was a ever swiftly increasing nonnegotiable fact. I shed a major part of who I have recently blossomed into being and became a sad shadow of myself. And really, I think that is mostly what happened. I became so depressed by recent events that I allowed myself to plummet back into wondering just how long I have left, spiraling downwards just because my Lupus is back.
What could be worse for me to think right now? Why do I tempt fate by giving it an opening to afflict me again? Why do I forget that, even though it was under rather dramatic circumstances, which I refuse to put myself through again, I beat this beast once? With concentrated effort coupled with Tibetan medicine I must believe I can do it again. Anything else is hopeless. And I am not hopeless. If I was, I never would have started this journey.
My nephologist told me that going into remission again is near impossible. As stated above, he also told me raising my GFR numbers was impossible. Yet I did. So just why should I believe him now? Why should I remain in his shallow area of thinking where his desire to treat my Lupus will harm another portion of me? How is this even an option, let alone the only one?
So in order to twist myself out of this funk I have made a big choice. No longer will I stew in the bile of western medical ideology where the plan — “there is no plan B” — consists of something that may “heal” one of my conditions while irrevocably doing damage to me elsewhere. This line of thought is unacceptable. Totally and Completely. I am not going to go so far as to fire my western doctor, but he is no longer going to be whom I refer to as my primary care doctor. As I continue to delve into the Tibetan medical tradition in order to understand it on a physical, mental and spiritual level, I keep coming back to the essential idea that the patient is responsible for his/her own recovery. My primary doctor should only be a guide for my journey to a more healthful existence.
So far my Tibetan doctor has been just this. My western doctors…. not so much.
I am not suggesting that jettisoning western meds in favor of Tibetan meds will cure me or even make my life easier. I have no idea if this will be the effect, but I know just embracing a system that empowers me as the patient, rather than speaks down to me as the ignorant patient, has lead to a swell of hopefulness and likely better health (currently waiting on results from my latest 2 week battery of Tibetan meds*). But once I made this decision two week, I was instantly transported to a far better place mentally than I have been in months. And this HAS to count for something.
As I continue to delve into the Tibetan med tradition, in order to understand it on a physical, mental, and spiritual level, I keep coming back to the idea that the patient is responsible for his/her recovery. My doctor is just a knowledgeable guide on my journey back towards health. And so far she has provided me with a map of well being that I would be extremely foolish to forgo in favor of a more destructive, invasive western treatment that would gurantee further complications. Umm… these are what I want to avoid. My Tibetan doctor’s treatmetns allow for choice. She never dictates to me. She does push me towards the health of my whole being, complete being rather than just in one area, but that is her job.
She does not just focus on medicine based treatment. And neither should I.
* Since I wrote this my results from using the Tibetan meds for two weeks have come in. The level of protein in my urine stayed the same for the 1st time on months. While this is not ideal, decreasing numbers would be idea, it is very very welcome, as before the kept rising so swiftly. Exponentially.
I also got some amazing news on my GFR numbers. They went up a point to 47. Or exactly one point below where they were in June of last year.
So yes, the next battery of Tibetan meds begins on the 22nd.