Posts

#metoo

I was raised by rape apologists. I was raised in a home that taught me some girls are asking for it. I was taught that as long as I was careful, more modest, home early, that it was ok for me to be safe and for someone else to get raped, because they weren't as careful as I. I had my body policed for the comfort of the males around me. I was taught that my autonomy is secondary to the needs of the men in my life. I was told that if I dressed a certain way, that if I drank too much, that if I was in the "wrong" part of town, that if I was out "too late", my sexual assault was my fault. I knew violent, forcible rape was wrong, but it was insinuated that it was only wrong if the women did everything "right" to prevent it. I was shown that my needs as a girl and later as a woman were not as important as the needs of the boys and men around me. I was taught that men are rapists and women are victims. I was taught that the victim's behavior should be scr

Trip Videos Delayed

Thank you all for your patience. I have regressed health wise rapidly in the past few days, so I have been unable to edit and upload the videos. Unfortunately, I don't know when I will feel well enough to accomplish that. I haven't had IV hydration in exactly two weeks, and that appears to be about a week too long. Although I experienced symptoms after missing my first two infusions last week, I didn't not anticipate them snowballing so rapidly into something I cannot control. I am on the struggle bus bad right now. I am not consuming any food orally. It takes too much of my severely limited body water to process anything heavier than electrolytes and juice. I have limited my intake to hydration only. I am also having serious blood sugar issues if I am off the feeding pump for even an hour or if I try to dilute my formula to increase my water and electrolytes. I am losing my ability to function and pass as a human in a much more rapid fashion than I anticipated and it is ac

Transcontinental Drive Day One

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We left California for Vermont today. This is our first attempt at a time lapse video. I will be tweaking the settings for tomorrow. Please let me know what you think. It was a beautiful drive.

Bad News

Hey Folks, Last week we got some bad news. We currently rent the house we are living in near Sacramento. We moved here to have easy access to the UCDavis hospital and all of my doctors, including my newest surgeon who is scheduled to operate in a little over three weeks. Unfortunately, the folks who own this house need to sell. We are unable to purchase it, so we have to move out by the middle of September. Due to the serious housing issues in California, especially after last year's and this year's fires, we can no longer afford to stay here. Rent went up more than 25% in this area in less than a year. I have cancelled my endometriosis excision surgery and have no anticipated date or location for rescheduling at this time. We are moving back to New England, to be closer to family. I am scrambling to find physicians in Boston who can take my case and continue to help. My current team here is frantically trying to get me stable enough for the week long drive across the country

The Introduction Series: Hello

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Hello! That's me! When starting a new project, introductions can be helpful. Now is as good a time as any to introduce myself. My name is Mariah, though I go by the pseudonym Madame McWeed. I was born in Maine and grew up on the coast there until my early twenties when I moved with my husband (who was my fiancé at the time) to Alabama for five years for him to go to graduate school. After that, we moved to California, where we have been for three years now. I never thought I would leave New England and now I have lived on all three US coasts. Talk about a charmed life. Living in three such disparate places has shown me so much about life. Moving to California also significantly increased my ability to access good quality healthcare and doctors. No one should have to move clear across the continent just to get taken seriously and get adequate treatment and care. I was born with a connective tissue defect, though I was not diagnosed until I was 29. Growing up undiagnosed was

The Tribulation of a Coiled Tube Change

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Last Monday, the cap for the jejunal port on my feeding tube tore some, though thankfully not all the way. I called interventional radiology and the wonderful person on the phone found me a spot for Wednesday, June 20th. Quick turn around and I was equally stoked and scared. This was my first tube change. I am nearly five months out from the placement; it is nicely healed, but I have never done this before. Many questions swirled in my head. What is the technical process for replacing the tube? Do I get anesthesia, sedation, pain relief, or anything? How long does it take? Who does the actual replacement? Can I get the exact same tube? Can I feed the night before? Do I need to take extra meds or skip any meds? Does it hurt? Does it hurt? That scared me even more. I used acetaminophen and cannabis after my feeding tube insertion and it was not even remotely close to enough pain management. How much would this hurt? Heart racing, I jumped on social media and beelined for my feeding tub