Awhile ago as I was wracking my brain trying to figure a way out of this mess, I realized that I needed a strong ally that would respect my desire to avoid capitalistic patriarchal medicine. The utter contempt and terror I feel towards all medicine and all doctors by now, having failed me and my loved ones so completely, means that I want and need to avoid Western medicine at any and all costs, but where except the hospital or jail can I reasonably expect to end up once I am unable to control my affect or behavior due to the intractable pain and disabling symptoms of my disease? For lack of a better term, as a chronically ill person with an incurable and progressive disease, but one that Western medicine has a vested interest in pretending they are able to treat, I need an “underground railroad”* to rescue me from doctors, nurses, and Western medicine, and I will need help to keep running from them for the rest of my life up to, including and after I become too sick to run. I need an organized, well-funded and politically-minded group of people who will not let this happen to me. And that made me think of the Christian Scientists.
*I understand that my use of the term and concept “underground railroad” is culturally appropriating and that the term refers to a specific historical context, time and place. However, one of the things oppressed people and particularly oppressed (meaning all) women have always needed was help escaping patriarchal medicine including medicalized abuse, medical experimentation and torture which is exactly what I am talking about in the context of “treating” an incurable progressive disease that does not respond to conventional treatment and mine didn’t. If someone knows of a better term or concept for what I am expressing here, I hope they will share it.
After reading your email, I just don’t see how your “treatment” has led you any where but down and out. Your list of food and supplements are far more expensive than any working person can buy on a daily basis.
You haven’t seen a “traditional” doctor for 3 yrs or more. And I’m not a supporter of anyone using weed as a treatment. It will NOT help anyone seeking a cure, it may dull the pain…..but I’m not sure on that one either. In the end you are still sick.
Now you need to do the work to get you back into the normal medical system and work with in that system for your future well fare. Your way has not come to a workable end for you. It has depleted and used up all of your time, talents and income. It’s taken you 3 years for it to come to this, now change course and bring yourself back to the surface.
My sister recently suggested that I send out an email blast to my mom’s side of the family to tell them what’s going on and to ask for help. Since I have started flaring the last month or so, probably due to my increasingly poor diet and the stress of my situation and looming homelessness due to having expended all my personal resources on out-of-state lodging and treatment with medical cannabis, she thought I needed to ask for help buying supplements to boost my health and recover my energy and temporary assistance with living expenses. From there, I don’t know what she had in mind except that without health and energy, there is no way I would be able to do anything and I very shortly will need to make a change as I will be unable to continue paying rent in a cannabis legal state.
For 2 days I received no replies whatsoever to my correspondence. Today, this came. This is from my mom’s sister, who is usually the spokesperson of the family so I assume this is their collective response. I have not responded yet, and I may never, because what is there to say? Let’s take it bit by bit.
When I first arrived in my new home state to start treating my Crohn’s disease with medical cannabis, this song was becoming popular and it spoke to me. I felt like I had made my escape from a medicalized torture chamber, that I was going to succeed against all odds to heal myself of an incurable and untreatable disease and that I had “right” on my side — my natural right as a thinking feeling being to follow my own intuition, beliefs and to live my life as I saw fit within the bounds of natural law and discarding male-made laws which were oppressive and above all, unsustainable. Under natural law, the only consequences to any action are natural consequences — meaning cause and effect. There are no punishments for poor choices only logical outcomes, nor are there rewards in a value-laden judgey sort of way. I felt, in a word, free.
Many times in my journey to heal myself from the ravages of Crohn’s disease I have felt like giving up. Although I have gotten profound pain relief and some real healing benefits from my handcrafted cannabis treatment protocol for Crohn’s, even on my best days I am still significantly ill; sometimes I begin to panic knowing how close I am to being homeless and I become absolutely desperate for help. Several times I have laid in bed and considered going to the hospital and more than once I have made doctors’ appointments thinking that I had finally come to the end of my abilities to heal myself and that therefore, I needed to reach out for help. But what’s the point of that when, as a chronically ill person with an incurable and indeed untreatable disease I already know there is nothing they can do?
Insufferable tomes explaining legal concepts are beyond the scope of this blog and frankly beyond the scope of my interest as a seriously chronically ill attorney and cannabis refugee so I will just sum up. As was and is my right as a competent adult in this country, I decided 3 years ago to abandon the capitalistic patriarchal Western medical machine that was not helping me with my severe Crohn’s disease. The painful invasive tests, failure to adequately treat either my symptoms or my pain and the aggregating side-effects of my medications were only causing additional medical trauma and making me feel worse.
As I have discussed on this blog, I am a seriously chronically ill cannabis refugee and am facing financial ruin and homelessness due to the last 5 years of medical expenditures related to my diagnosis and treatment for Crohn’s disease, a crippling incurable and progressive autoimmune disease of the digestive tract. After treating for 2 years with Western medical treatments which were not only ineffective but also making me feel worse, I left my partner, my home, my state, my profession and my previous life behind and traveled across the country to seek pain relief and healing through the use of medical cannabis. Thankfully, I have found significant pain relief and some amount of healing from my disease far beyond what conventional treatments had to offer and I am so grateful to have been able to do that for myself. Unfortunately, after more than 3 years of paying out-of-pocket for out of state lodging and cannabis treatments, at this time, I have nearly reached the end of my personal resources to deal with this issue. Due to forces beyond my control, I am not currently eligible for disability- or need-based benefits despite my unfortunate diagnosis, significant disability, negative prognosis and financial need.
In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disorder of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers. In Part II, I describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with. In Part III I described my escape from the Western medical industry — after 2 years of suffering with only more suffering to look forward to, and no relief in sight, I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and heal myself with medical cannabis. In Part IV I described my treatment successes as well as the fallout and negative consequences of my decision to leave my partner, my home, my state, my profession, and the Western medical industry behind. From there, I will let the reader surmise what would have been an appropriate response from friends and family and hope that they are able to provide that considered, appropriate response if one of their own friends or family members fall ill, and to understand that they themselves are unlikely to receive the same considered response under the same conditions and to be prepared. Being let down by the very people who are supposed to be there for you is a devastating blow.
In this Part V I will describe the actual responses I have received from friends and family regarding my situation which have been so inappropriate, unhelpful and physically and mentally draining that I have had no choice but to cut off all contact with almost everyone I know.