Truthfully, what were the doctors' responsibilities when we were diagnosed with Familiar Adenomatous Polyposis? What were their responsibilities when my father was dying of liver cancer caused by FAP? And what were their responsibilities when his mother (my paternal grandmother) died from what was not at the time understood as FAP caused illness?
What the doctors don't understand or have no possibility of knowing is not their encumbrance... If you didn't teach me the answer to question #5 on whatever exam, should I have known the answer?
So, here I am with a lot of questions and doubts... And the incredible notion that something else is occurring within my body that no one is taking into account when they diagnose me and suggest treatments... For 3 years now I'm beating my brain for asking myself the correct questions, questions more apt for encountering responses that come closer to the truth within my body.
Without adequate questioning, without random miracles falling from the sky, we can't respond adequately to difficult situations.
We're about to enter the process of third opinions of medical "experts" here in Guadalajara. But, before entering their consultation rooms, I must have all the data infront of me, along with the themes they typically do not consider. For instance while perusing the laboratory results of 3 years, I noticed that the year before removing all wheat products from my diet, I was repeatedly shown to be experiencing Basophilia (high Bosaphile levels)... Basophiles are white blood cells that respond to allergic reactions... Allergy to mold spores... allergy to pollen... Allergy to cats and dogs... allergy to peanuts... We've lived in a heavy mold spore situation for 4 years now due to heavy water damage to the ceiling of our house to which the "landlord" responded inadequately and with which we repaired the best we could over the past few years... Hence, I've had respiratory issues on and off over the past 4 years... some very serious accompanied with hives and swelling... That said, the basophilia went away with the removal of wheat... It didn't go away with the removal of mold spores because the mold spores are still here as shown with my most recent bout of respiratory problems in October--November... But, the basophiles returned to normal with the removal of wheat. So, does this mean that I'm allergic to wheat? I wouldn't know. I haven't been tested for wheat allergies...
This is important. With the removal of wheat, I dropped over 30 pounds... of inflammation... My pouchitis (a type of Irritable Bowel Syndrome) went away... But what doctors would have suggested removing wheat for treating Basophilia? What J-Pouch experts are talking about wheat as a cause of pouchitis? What is pouchitis? The equivalent of colitis... meaning that it can cause horrible bowel issues such as ulcers, obstructions, varicose veins and cancer... leading to more preventative surgeries. But, before the surgeries the "patient" lives in misery... And what if the "patient" doesn't have the economy for more surgeries? And what if the "patient" doesn't live where j-pouch specialists exist? If a tree falls in the woods and you didn't see it fall... Did it fall? Does it matter who experiences what if they aren't who you truly care about? or if they didn't appear on the big screen like the boy in the bubble or Lorenzo? Would we care about the probability of success of Will Smith's character in "Pursuit of Happiness" if we hadn't seen the story within a Hollywood movie?
The problem is that I grew up within the "American" television/Hollywood movie popular culture. So, it seems that my expectations of doctors and life is based upon a Hollywood fantasy medical success drama. I expect them to become intrigued by the information/data and ideas I share with them... They should see a wonderfully interesting and satisfying medical challenge infront of them... But, what I think they truly see is a headache... They should see a challenging medical/scientific puzzle with a very great possibility of solving... The other day Margarita mentioned that what I've stumbled across over the past few days or so reminds her of Dr. House episodes... What would it take for Mexican intellectual youth planning on studying medicine to be truly inspired or influenced by the medical/scientific perspectives of Dr. House? Who inspired scientists and doctors to pursue responses to difficult medical situations? Were they only pursuing fame and fortune? all of them?
So, putting everything into perspective for me has much to do with trying to understand why people are doctors and what is their true pursuit, what that has to do with my own personal situation (what is the probability of truly resolve my own personal medical issues), and truly what is my existential reality...
If a tree falls in the woods... If the patient isn't related to someone who is wealthy, popular or important... How many people are we on this planet? How many of us have the same issues or worse issues...? How many suffer worse issues of social justice etc? How many are more "deserving" of humanitarian aid and who will not receive anything?
Humanitarianism doesn't have to refer to "Live Aid" or "Wave Aid" (responding to the various tsunamis)... We all can be humanitarians... at times... and decide to help someone momentarilly (like helping an elderly woman cross a busy intersection...)
The question is what is the possibility of a doctor having the time and focus for listening to me and understanding what I've placed infront of them and decide that they "should" assist me in my personal health "project"... But, that brings up the question of what are their own personal responsibilities to themselves?
It's frustrating... because the information is very clear... and it is all found within the scientific liturature...
The problem is that endocrinologists, cardiologists and gastroenterologists see Inmunoglobin M and Basophiles as being outside their focus and related to allergenists and immunology specialists... So, those data are ignored...
The problem is that the wonderful project created between Amherst College, Smith College, Mount Holyoke College and the University of Massachusetts/Amherst called Hampshire College in that they believed in the 60s that interdisciplinary studies was a more affective way of addressing social, political, technological and scientific problems for one reason or another was not grasped by the rest of the intellectual/academic/scientific and innovative "world community"... Although I understand what it is I'm doing and the connections at which I'm looking, that doesn't mean the doctors can understand interdisciplinary focussing and looking at things from "outside the box"...
You have no idea just how exhausting this battle and project is... Granted, you also may not understand just how satisfying are the discoveries and connections I've made. And, that's why I've been writing about this... Sometimes I think that maybe it isn't the outcome that matters as much as knowing that I've been on the right track for almost 3 years now... although the doctors haven't been much of help... Actually, I don't believe that there is a success story with a happy ending for me... But, at the very least you will have the documentation here... someone will know where I was standing all the time... Maybe this information will be of service to someone...
My father was a doctor. He was diagnosed with FAP when he was dying of liver cancer... None of his education and the science was of service to him... His story or our story is a fable... a trajedy and a story of survival. But, truthfully, how important is it?
And that's where I am at this moment. Should I continue battling within the investigation and spending money on mediocre science and medicine? Or should I see destiny as being what is out of my hands and beyond my control and just allow to come what is coming and go on vacation...? Not a vacation in a metaphorical sense of the word but truly on vacation...
At times I want to relax from these issues and leave for places I haven't been or haven't been in a long time... like Oaxaca, Chiapas, Quitana Roo, Guatamala... Puerto Rico... the United States... We have Salvadoran "friends" here in Guadalajara who visit their country of origin 2 times per year... Yesterday Margarita showed interest in the possibility of visiting El Salvador... We can start working towards her visa for entering the U.S..., since she finally received her revised birth certificate... The problem is my tendency towards pragmatism here... Issues of money saved or spent, diet, stress... and being in the position to respond to whatever medical issues arise... Travelling removes the base from where I've been working the past 3 years... working on my health issues... If we decide to travel, that means we're putting aside aspects of the health project, such as second opinions with cardiologists and trying to connect a gastroenterologist with a cardiologist with the idea of connecting my FAP/Gardners and the digestive structure caused by the preventative surgeries with the coronary issues. It means putting aside the heavy metals (mercury and lead) detox program or the process of cleaning my arteries of plaque which is another program...
This is a problem. It means a measure of giving up upon a possible medical success... It's the interchange of being chained to an "improbability" and being freed to live free in the time I have... I don't see freedom in lack of hope and not being able to plan for a better future as I've been doing the almost 13 years I've been with Margarita. Removing the future and planning and hope for something new and improved is the removal from my life what it has been based upon the past 13 years... I guess it's like what work-a-holics encounter when they consider retirement... Do you know how many people enter rapid physical and mental deterioration upon retiring?
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