Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.

Remember when “they” were saying that getting AIDS was like the worst thing ever?  I do — I am a child of the 80s afterall, and I was in 4th or 5th grade when the AIDS crisis hit and everyone was terrified of getting AIDS, children (children!) were being told to never have “unprotected” sex because of the AIDS, early on we were being told not to use public drinking fountains and to ostracize children with AIDS so as not to get AIDS ourselves.  Remember Ryan White?  I do!  I didn’t even have to Google to find his name, 40 years later I still remember his name and his story by heart, he was from my state and a few years older than I was.  He scared the shit out of everyone because he wasn’t doing anything “wrong” when he contracted AIDS like having the unprotected (or gay) sex.  That poor soul got it from a medical procedure, in his case, a blood transfusion for hemophilia.  Tragic.

Soon it became passé for anyone to trouble themselves with “how” anyone contracted AIDS — AIDS patients deserved our compassion, our respect, our acceptance of their physical and mental decline and resulting disability, regardless of how they got it.  Remember Ali Gertz?  I do.  She was a straight, affluent, white female and she got HIV and developed AIDS from a single sexual encounter with a man.  Of course, the man was bisexual and almost certainly got it from another man but by then it ostensibly didn’t matter…unless a woman gave her baby AIDS, then of course the woman was the Devil.  AIDS didn’t discriminate, AIDS was a horrible, painful, untreatable disease, a death sentence that no one deserved…except mothers who gave their babies AIDS, they deserved everything they got and more.  But deserved or not, no one was disputing that AIDS was serious, painfully serious, brutally final.

At some point “they” started saying no it’s not the AIDS specifically that’s the problem, it’s the HIV you don’t want, and that’s a virus so just use Universal Precautions and you should be fine!  Fairly recently they started saying it’s possible to “live with” HIV and never develop full-blown AIDS at all.  The message there appears to be that AIDS is actually what you don’t want afterall.  AIDS — Acquired Immuno Deficiency Syndrome — where your immune system becomes weakened, decimated and destroyed and you develop life-threatening opportunistic infections from bacteria, viruses, parasites, fungi, you get cancer (or more than one) and then need to be treated for the cancer(s), your quality of life plummets to zero and you can no longer work or play effectively, your friends and family have to care for you, even though there’s nothing long-term they can do for you, and you die painfully, skeletally, covered in sores and rashes, beyond spent, half out of your mind.  That’s the effects of the AIDS mind you — the HIV in and of itself appears to be relatively harmless except that it causes AIDS, and AIDS is still bad, very very bad, something unequivocally to be avoided.  Are we clear on that?  Good.

Enter “biologics,” the class of “treatment” — read Big Pharma poison — approved for managing autoimmune diseases like Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) Crohn’s disease and more.  The so-called “side effect” of biologics — read iatrogenic illness and injury, meaning additional illness and injury caused by medical attention and treatment itself — is that biologics “change how your immune system works.”  That obfuscating bit of Big Pharma propaganda brought to you by the literal pricks at Johns Hopkins Arthritis Center.  Of course, “change” here means “destroy” and going from having a functioning immune system to not having an immune system at all is certainly a change so they aren’t technically lying but WOW, just wow.

Continue reading “Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.”

Advertisements

How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part V. The Response.

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.

Continue reading “How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part V. The Response.”

How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part IV. The Fallout.

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.  3 years later, I am still here and facing a terrifying and uncertain future as a seriously chronically ill cannabis refugee.  In these parts, I hope to show how desperate and hopeless a situation I was (and still am) in as a seriously chronically ill person who was not responding to conventional treatment.  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 IV I will describe the fallout of my decision to leave my partner, my home, my state, my profession, and the Western medical industry behind.

Continue reading “How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part IV. The Fallout.”

When You Can No Longer Consume, Conform, Reproduce, Obey. What “Disability” Means Under Capitalism & Patriarchy

“Consume, conform, reproduce, obey” is a reference to the 1988 American science fiction film “They Live” which suggests that subliminal and other cultural messages essentially program people to behave in certain ways which benefit the state and for-profit corporations.  Although the film was fictional, there is an excellent case to be made that it was also based on real life and the real experience of human beings existing under the brutal systems of capitalism and patriarchy.  Here, we are expected to conform to society’s rules with an alleged “greater good” prioritized over the needs of the individual; to obey the mandates of our elite corporate and public overlords created by them to benefit themselves at our expense; to reproduce if we are able and to seek medical assistance to conceive if we cannot; and of course to consume as many products and services as possible which generates income for the most wealthy and powerful among us.  Most able-bodied Western people do these things without thinking too deeply about them or they do it for as long as they physically and mentally can.  But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

Continue reading “When You Can No Longer Consume, Conform, Reproduce, Obey. What “Disability” Means Under Capitalism & Patriarchy”