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disabledunitypunk · 7 months

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Mod Stars here.

Hey, I know I don't usually do this, but I wanted to provide a life update, including current health status, on this blog. I'm hoping it'll remind those that have been unkind recently that we are people, and also let the many very kind and supportive people who have followed or even interacted in passing with this blog know why activity is sporadic.

CW for details about bodily functions, some of which may be gross or may trigger emeto/copro/uro-phobia, as well as mentions of medical neglect, parental abuse, and disordered eating, very brief mentions of sexual trauma and suicidal ideation (not mine)

So, first of all, currently I am watching my grandmother with dementia overnight four nights a week. I already generally have a pretty fucked sleep schedule, so I was basically the most "convenient" family member to do so. I'm glad to be able to help, but also beyond exhausted, even just on a purely physical level. Emotionally, I'm not that affected for complicated reasons (low empathy is a factor, but also specifically my relationship with my family because of my mom's abuse and their support of her). Having to be fully present and aware of myself and my surroundings for almost 50 hours a week though is taking all my energy and then some.

Because of this and medical trauma from continued medical neglect, I have been struggling to actually address my health. I mean to switch doctors again, after my doctor literally (flippantly, not sympathetically) told me "western medicine isn't really any good at helping with chronic conditions" and keeps dismissing any condition as a possibility if my symptoms would fall under even mildly atypical presentation. For example - she dismissed the possibility of pancreatitis because I'm not vomiting and "don't have severe pain" - except I do have severe, debilitating pain in exactly the area typical of pancreatitis. I just don't show it because I live my life constantly at a middling to high level of pain.

(It may not be pancreatitis! That's okay! But a refusal to do so much as an entirely risk free simple blood test or stool sample is unacceptable.)

I also have not been able to address my vitamin D and B12 deficiencies and they have fallen to severely critical levels again, along with my folate. My ferritin levels, on the other hand, are high. I've also lost nearly 35 pounds in the past eight weeks, which my doctor is convinced is due to "dietary and exercise changes". The only problem is, other than finding and cutting out one of my big allergy triggers, I haven't significantly changed my diet in well over a year!

I also am continuing to get stonewalled by incompetent and/or lazy allergists on receiving a mast cell disorder diagnosis (most likely MCAS) and getting treatment for it, as my list of safe foods gets smaller and smaller. I recently tried quercetin and DAO enzyme, which initially helped but now doesn't seem to be anymore (and I'm concerned one of the inactive ingredients in the supplements may in fact be a trigger itself). It's a very simple series of noninvasive tests and at this point I've been to both of the practices within hundreds of miles of me that take my insurance. I don't know how else to get them to listen to me. About once every two months, I end up in the ER needing prednisone, but can't even follow up with an oral course because I react to most common binding ingredients and insurance won't cover a compounding pharmacy without a mast cell disorder diagnosis. I'm hoping next time they'll be willing to prescribe intramuscular route, but I doubt it.

I have been having abdominal/back pain in conjunction with like, hazard-vest-orange diarrhea with fat or mucus discharge. My last ultrasounds not quite a year ago were clear, but idk how because they could barely get the images because the light pressure from the wand was so intensely painful.

My POTS is currently untreated as well due to lack of access to meds that I don't react to, so my tachycardia and dysautonomia are running rampant. I can no longer go further than my mailbox down the hall without a wheelchair most days.

My chronic pain (likely fibromyalgia, but also very possibly a connective tissue disorder - no hypermobility however) gets triggered whenever any other conditions flare-up. The lowest I am on the helpful pain scale charts like the one below is a 6. Average is 7-8, with frequent spikes to 9-10. I don't go to the emergency room at a 10 because they literally can't do anything for me, and sometimes make it worse. Last time I went in for anaphylaxis, for example, the folic acid in the fluids they gave me caused an obvious visible allergic reaction, which went down when they stopped the fluids and resumed when they restarted them. They just shrugged and let the fluids run their course.

[Image ID: A pain scale chart that reads as follows - 0-10 SCALE OF PAIN SEVERITY. Severity - 10 Unable to Move - I am in bed and can't move due to my pain. I need someone to take me to the emergency room to get help for my pain. 9 - Severe - My pain is all that I can think about. I can barely talk or move because of the pain. 8 - Intense - My pain is so severe that it is hard to think of anything else. Talking and listening are difficult. 7 - Unmanageable - I am in pain all the time. It keeps me from doing most activities. 6 - Distressing - I think about my pain all of the time. I give up many activities because of my pain. 5 - Distracting - I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain. 4 - Moderate - I am constantly aware of my pain but I can continue most activities. 3 - Uncomfortable - My pain bothers me but I can ignore it most of the time. 2 - Mild - I have a low level of pain. I am aware of my pain only when I pay attention to it. 1 - Minimal - My pain is hardly noticeable. 0 - No Pain - I have no pain. /end ID]

I'm sorry if the ID is not great, btw. The only way I can do image IDs is by using google lens to copy the text and then formatting it. If anyone wants to do a better ID, we'll happily reblog it.

I will say, this isn't something new, but I also often just can't eat anymore, because I'm just too reactive and I feel worse when I eat than when I don't. I'm struggling with disordered eating urges that started back when my mom was forcing me onto fad diets, though I've mostly managed to combat them with strict rules about when I'm allowed to not eat (I have to be severely flaring and cannot fast for more than two days at a time - which, tbf, is actually effective at bringing the flare down because it allows my degranulating mast cells to be replaced.

My sleep apnea is worsened significantly every time I'm flaring and causing sleep deprivation, and I'm also struggling to keep up with both cleaning and ordering replacement parts when they are due. I also had just started actually sleeping at night thanks to a sun lamp and feeling so much better, and feel worse again now being awake nights. I also am dealing with throat irritation and severe sinus inflammation/rhinitis whenever I flare, as well as hives/eczema. The skin stuff at least is annoying at worst, but still.

I also am not certain this is related, but it seems it may be: I have frequent urinary urges, whether I have to go a little or a lot, that I can't sleep through. I used to rely on adult diapers but can't currently afford them, so I have a makeshift "chamber pot" that my partner sets up for me next to our bed every night to minimize the sleep loss from this. It's unclear if it's urinary cystitis or just a side effect of MCAS, but if it's the former, I cannot currently do the recommended physical therapy for it due to sexual trauma

That's I think a fair bit of the physical stuff, though I'm sure I'm forgetting some. I spend all the time not watching my grandma sleeping or sick in bed. I often am sick while watching her too, but since it's mostly just being there to make sure she doesn't leave the house, I'm able to just lay there on the couch or the cot they have and be sick with my duties that involve interacting with her specifically limited to necessities at the request of my grandpa.

Then of course there's the mental health stuff. I'm struggling with some depression surrounding food, but actually, my anxiety and depression are at the best they've ever been. I am however struggling a lot with processing said sexual trauma (I basically haven't been able to, especially over telehealth). For reference, it's of the type that happened at a certain age (that this site will delete blogs for talking about).

Trauma from medical abuse and neglect, besides making me struggle to actually pursue care, is also causing difficulties.

As is trauma from past abuse as well as my father's extreme dismissiveness and outright bigotry regarding both my disabilities and queerness (such lovely things as "well, if you want to rely on the government for money, it's a bit extreme to want to force them to let you get married" and "I don't see how disabled people having added vulnerability to financial abuse is any different than anyone else" and "the government will never actually restrict adults' right to transition other than by dropping insurance coverage for it, just pay for it yourself, the bill that would make it illegal for providers to prescribe HRT is as ludicrous and unlikely to pass as the bill introduced to bomb Mexico". For reference, he is a first generation Mexican immigrant, so that's not also a racist white guy statement).

My parents are also anti-vaxx yet somehow not covid deniers??? But they've bought into a lot of bullshit "medicine" that they keep trying to convince me to try. I use my MCAS as an almost convenient excuse as to why I can't take any of their bullshit "remedies".

I have to keep reminding myself to not let myself care for them and that I excised all feelings for them for a reason, for my own emotional safety.

Poverty as well is causing it's own trauma, which I won't get into, other than to say that food insecurity is terrible and our landlords are fucking evil slumlords.

And of course there's online trauma from past experiences with dogpiling and harassment which has been triggered recently. I am incredibly grateful to Mod Cloud for fielding the recent situation for us.

As for other mental health diagnoses: the cluster B diagnoses I'm actually managing fairly well right now. The DID I am struggling a LOT with. Communication is at an all time low since realizing our plurality and amnesia and dissociation are pretty close to an all-time high. Some of the dissociation is lower during our shifts with my grandma - I'm more present in the body and more aware of it and our surroundings - but dissociation between headmates is bad, and I am much MORE dissociated on my days off now.

OCD is doing okay. I struggle a bit with guilt over the feelings I have about my grandparents, but quite honestly I feel less bad about feeling that I wish they would pass sooner rather than later when I know it would be a mercy and a kindness to both of them at this point.

ADHD is awful. My executive dysfunction is utterly unmanageable without meds, which I both react to and which worsen my tachycardia, even when on a beta blocker but especially when not. I am more functionally disabled by this than quite literally any other of my disabilities, except perhaps my negative schizophrenia symptoms. I'm managing my psychosis well for that, btw, and the psychosis has always been the easiest part anyway.

My brain fog is awful, my cognitive functioning feels like it's at zero most of the time, and I literally can't even address most of this because the physical symptoms are so much more demanding and immediate, if that makes any sense. But I can't address the physical symptoms primarily due to trauma and executive dysfunction, so it's a vicious cycle. I need a carer myself, and can't get one right now.

I also am extremely scared that something will happen to me - not so much for my sake, because while I desperately WANT to live, I am not afraid of death - but for my partner's. We need to make an updated safety plan for her because she and I are both worried about if she could even survive if I died. Both on a physical level if she doesn't have SSI yet, because she at this point CAN'T work, and on an emotional one, because we know she'd be very suicidal at that point. But also, even if she'd be okay, having to live up to 50 years without your person, with all the color taken out of life... the thought is utterly horrifying to me, as someone who is stable enough to probably survive it. I don't want her to have to go through that.

So I'm pushing myself through the triggers and outsourcing my executive functioning as much as possible to make sure I can stay here for her.

I am incredibly exhausted. I haven't even talked about how any other headmates feel because I have so little communication right now - in part because many headmates are unable to even come near front if the body is in a significant amount of pain or otherwise sick.

Just typing this right now, my lungs are on fire and I have a rattling cough (non-pathogenic, this is a common allergy/asthma symptom), my skin is hypersensitive and hurts to touch, my entire body from my head to my toes is at what for me is a low level of background burning pain, my back and abdomen hurt especially, I can't maintain my temperature at all, I can't sleep despite this being around when I'd normally sleep since my schedule got thrown off, my bladder is lightly aching, and I haven't eaten because I'm not feeling well enough to make anything and my partner is sleeping and I also can't handle any GI triggers at ALL right now. I'm also itchy, my sinuses are moderately inflamed, and I have neck edema.

Oh, and our water is coming out of our tap brown due to a temporary shut off that either hasn't been flushed or has not yet actually been turned back on, that none of the affected residential buildings in the area were informed of beforehand. I'm badly dehydrated and have no access to water.

At this point, this is just our life right now. There's not much that can be done. I'm not going to say no to helping with my grandparents - both because actually very much still care about them and because, selfishly, it sets me up to possibly eventually be able to move into their house and potentially stay there permanently. That would give us a level of stability that would do wonders for our general health and quality of life.

It's not all bad - my dad will be providing a car for me to facilitate my night shifts, that I'll be able to use outside of that context (I mean, I'll have to be judicious, since I struggle badly with ADHD and dissociation affecting my ability to drive, but I've been talking with my therapist to find effective coping mechanisms and don't really intend to use it beyond short grocery and doctor trips. I will also set aside what money I can to Uber instead if I really can't drive safely. Public transportation is not an option in my area for this.)

Also, since getting the POTS diagnosis, I've been so much calmer, because I no longer associate the tachycardia and dysautonomia with "anxiety". When my heart is racing or I'm suddenly flushed and overheated and short of breath, etc, I'm just like "ope POTS lol". Sometimes I wonder if I ever had anxiety or was just gaslit into thinking I did - at least since getting out of high school, since the diagnosis probably did actually apply then. (Though, tbf, high school -_-).

Anyway, I don't fully even understand why I want to say all this, other than to show you what I'm struggling with and remind you that I'm a real disabled system behind the blog profile pic, as is Mod Cloud. I hope that even if you disagree with me or Mod Cloud on subjects of ableism, you can treat us with basic decency and respect (in the sense of treating us as people, not as an authority).

I'll take this time to once again state we are all strongly anti-harassment, as well. I'm not just referring to some of the ableist harassment recently sent to our ask box, but also to remind any followers or supporters of ours that harassing even people who are extremely cruel or bigoted to us, let alone who just disagrees with us, is unacceptable behavior. It will merit a block to anyone we find doing so, and we strongly encourage any affected blogs to report it as well (Tumblr, fucking let us report harassment when not the affected party like every other site on the internet. Twitter is literally better than you in that regard, come the fuck on.)

Also, if you disagree with us and are harassing others who agree with you to make us look bad, really? You're not even just not a good person, you're an ableist bully who was looking for any excuse to harass multiple disabled people on opposite sides of an argument. An ask sent about harassment they wrongfully assumed we condoned or had anything to do with literally said "this is the opposite of unity" and they were right on that count, at least. Go suck fed dick somewhere else.

Anyway, we don't necessarily need advice or even for anyone to express sympathy, right now. We just needed to get off our chest all that we're dealing with, like we said, in part to remind people that we are people and in part to let people know why we are only sporadically active.

Thank you for your patience, and no matter what your feelings on discourse, for those who have been good to us. Even if you disagreed so strongly with us that you had to immediately block us and rant on your blogs about us, you did us the kindness of walking away and not lashing out at us, and we really do appreciate it.

And to all those that see this: May your good days be many and your bad days be mild.

#unitypunk #mod stars #ableism #possible emetophobia + coprophobia + urophobia triggers #brief mentions of SA and abuse and medical neglect and suicidal ideation #mentions of parental abuse and disordered eating #cluster B #ADHD #DID #anxiety #depression #OCD #schizophrenia #POTS #MCAS #chronic pain #dementia #chronic illness #disability

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