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Onnaloves

My autoimmune disorder has a name… Sjögren’s syndrome. I came back from the ophthalmologist and he pretty much diagnosed the disease on the spot. He wants me to get clinical evaluation on Sjögren’s . It’s done some damage already so now I’m really trying to reverse things.

Onnaloves

So this autoimmune disorder is being confirmed by a new doctor after the recommendation from a random visit to the ophthalmologist. I went in because my eyesight has rapidly gone dim, and my eyes are continually sore. Turns out, he asked me a bunch of questions and I didn’t realize I checked the box for all:
Arthritis in fingers in mornings
Dry cough
Dried out sinuses
Dry mouth
Vaginal dryness
Thick lymph
Irritable pancreas
Low estrogen
Chronic fatigue
… the disease attacks all hormone and fluid excreting tissue, and the lymph becomes thick irritating nodes and causing blockages. So yeh it all fits with my experience of general health, or lack of.

There’s no treatment but I’ve been managing it well using these Chinese soups. With exception to my eyes, and they feel awful. I accidentally bumped into SSI or disability allowance. Apparently this disease is on the disability allowance because of its chronic debilitating nature. Soooo I have to figure out what this means.

On discovery of this latest health twist, my husband has gone and applied for life insurance for me. I was denied at Disney due to my depression being a red flag. He then asked me to sanitize my social media of any health posts to prevent being denied when he applies.

He is so paranoid about needing money in the event I am not around, I’m not sure what I’m supposed to feel or react. Perhaps he’s really lucky and did find the right fit, as anyone else would surely be thinking he’s gonna murder me. It just makes me feel disgusted somehow, that I have monetary value, instead of respect.

Hmmm what is that feeling I’m describing? Disgust? Disbelief, shock, stupor?

I just can’t react. My face is blank. I don’t know how to process this. I’m not sure I’m right in the head. Should I be angry? I’m not angry. That’s just the way he is. He’s kinda infuriatingly predictable. I put up with it. But I find it disgusting and appalling. However, the only time I complain is on here.

I tried to book an appointment to see a mental health practitioner for this week. Keith got me to cancel my own appointment because he is worried about bills slamming his cashflow plan for my income. That was irritating, I was looking forward to running by some of my shit by a third party and just figuring out what my next steps are.

Do I do weekly talk therapy to get some of this shit off my chest? Do I figure out a new medication plan? Is my adhd, and seizures, and numbness related more to the autoimmune thing? I’m fucking tired again.

Onnaloves

I’m overloaded and I definitely suffered a break last week. My immune system caught me off guard and attacked me quite severly, sending me cognitively backwards with speech and thinking difficulties. It’s amazing that the immune system in the brain gives one no choice in the case of raised stress levels.

It says. Well fuck if you aren’t listening to me, you don’t need me, so I will cut off your brain. And so ensues a massive migraine and fever and a chronic exhaustion I cannot recover from, because of the attack.

I woke up ten hours later, unable to get my shit together, unable to figure out how to make myself something to eat, unable to figure out time, or relief or bathe myself properly so I just sat in a warm tub soaking and wondering what happened.

Then saw the ophthalmologist that afternoon after an emergency booking through ZocDoc to find some relief for my burning tired eyes. Only to be told, my eyes were being destroyed by this condition that now revealed itself as Sjögren’s Syndrome. The disease is triggered when the immune system goes through a sugar crash, or when I eat spicy foods, or when I’m bitten by bugs and mosquitoes. Any inflammatory trigger, the body assumes is a result of some excretory problem with my glands, and it attacks all the exocrine glands in my blody. My tears, my amygdala the emotional center of my brain, the hormonal fear shift in my brain that also controls my circadian cycle, my sleep and wake hormones, my pancreas and excretory signals to metabolize sugars. But without these hormonal systems, the body becomes an aging lump of undigesting stasis. Stuck poop. Mucous linings unable to recover from tissue sloughing. And so the tumors set in.

Eventually the prognosis is that excretory glands become so destroyed by auto-antibodies trapped in the tissue and organs where they are not supposed to be, that cancer follows. Usually in the form of pancreatic, or lymphoma cancers.

Yey. So now I have a target. And so far, these soups are working, but I don’t know how much my tear glands have suffered and can recover. I always wondered why I couldn’t cry. My sinuses are dry and often crack inside leading to infection, I usually have to stuff a cotton swab with a dollop of ointment up my nose to prevent it cracking inside like a dry heel.

But now I know how to stop these auto antibodies from sitting around inside organs where they are not supposed to be, and letting them die naturally before the new batch of soldiers is programmed and released from the spleen.

The problem is an altered immune system that’s released too many rogue auto antibodies, that have found their way deep into endothelial tissues where they are not supposed to be. Once in there, the cells being destroyed and the cytokine signals triggering new solders to arrive sets up a continuous cycle. The key to breaking this cycle is in the Chinese soups.

There are special cells that line our capillaries called endothelial cells. These cells are like front line unarmed police with crowd control shields, they are supposed to be locked arm to arm, but when they start to fail, the killer cells sneak through and become embedded beyond the blood brain barrier, and in the gut lining, and start kicking off a cascade immune response.

The blisters that form on the sides of one’s fingers are a sign that endothelial cells are weakened and letting auto-antibodies through into tissue they shouldn’t be attacking. There are 7 bonds that keep these endothelial cells tesselate a single cell deep lining our entire capillary system and the blood brain barrier… 7 bonds that if one weakens the others have to compensate. Each bond has a purpose to let one thing through or another, and when they can no longer compensate, the adhesion between these cells will break down allowing things like drowning in one’s own lungs from autoimmune fluid infiltration.

I have found the reason why many of these Chinese soups are working, because they feed the adhesion in these barrier cells, this is called “strengthening the qi” I always wondered what strengthening the blood or energy meant, but if one makes our capillaries stronger, more elastic, more renewed, the blood and it’s transport system of nutrients and sentinels can work efficiently. This is effectively called “quickening the blood” in Chinese medicine.

So, for all auto-immune difficulties where auto-antibodies are targeting own systems of the body, we need to quicken the blood and strengthen the qi, by effectively allowing our crowd-control barrier cells to hook elbows more effectively. I’ve been doing these soups daily for 4 weeks now, and the blisters on my fingers have gone away, but I really must avoid these triggers again.

Onnaloves

I think my posts are going to get weird again as I go into exploratory mode into my sexual behavior. My Jekyll is rising and I can’t sleep. The urge to go out and tick off another fuckit list item is grating on my mind.

When my body is in trouble, low energy, depression, stress or whatever, I notice that I get these impossible invasive thoughts about getting laid. It’s been happening in the work place where I am literally trying not to grind my stool. I’m grossed out by myself. I’m not even attracted to anyone or thinking about any special person, my body just goes “hey gimme a release”, and until I find a way to cum, I think I have penis brain or something because literally these invasive thoughts make me scared that I’m gonna say something stupid infront of people.

I feel like the movie Crank, where instead of the guy needing anything to keep his heart rate up including sex-in-public to stop his heart from stopping; my autonomic system wants an oxytocin and dopamine boost to trigger estrogen (since I have an exocrine gland problem) and my body thinks the only thing that will work is if I drop right this second and grind myself through on the spot.

AINT gonna happen but the problem is my mind is fighting it silently, and the split personality sexual disorder thing is just beating me senseless. And I have no one to talk to. I don’t want to talk about this in therapy because all I really need is sex. My way. So the predation begins and I start looking for a stranger to hook up with… ugh how sad. I mean it’s normal right? When it’s straight sex that is, but for me because straight sex DOESNT give me pleasure, INFACT it’s actually a kill switch. My autonomic system is so scarred and traumatized that it reacts to a man treating me as a cum bucket. My reaction to any guy having sex with me is deep, unfix able, like, if he is enjoying himself, I can’t cum. I don’t get relief, and if I sense he is having pleasure, the traumatic history prevents me from enjoying any intimacy.

So the workaround I do to enjoy sex, is to follow my twisted fantasies where any and all responsibility of sex is taken away from me. When I was a pro domme men paid to have pleasure. That was exactly the point that I despised which made me command returning perverts to be humiliated or whatever. But I never received pleasure out of it.

Instead, I have this caveat with strangers that they proceed even when they cannot believe I am asking for something so bizzare and unsafe.example to be mummified in packing tape and fucked through a small hole. I spent 4 hours edging and didn’t cum but it was the best hormonal release I’d had in years. And he didn’t get to finish which was even better. Bastard stealthed me and took off his condom so I never hooked up with him again. I wrote about the event about 7 months ago I think.

And now 7 months have gone by and I’m feeling dry as bone and hungry for weird sex again. So on my rounds of predating I found an asshole I think I can collaborate with. I knew him from 8 years ago. He used to hold these weekly acrobat parties, and would entice girls to stay and basically, take advantage of them. I knew what was going on but didn’t think it was all that sinister because I literally felt other girls were able to handle themselves better than me, and if I was such a socially inept individual that I was left alone during these parties, somehow I didn’t think that the more sociable girls were taken advantage of.

He used to call me a cat because he’d find me draped around the house in some contortion pose on my own enjoying the beats of the house party but not really socializing, just trancing out on my own watching the acrobats play. My yogini friend informed me that there had been a few assaults at his parties, and I was blissfully avoided because I’m just not that hot lol.

Anyway, turns out this smarmy asshole lives right near me, new place, and he has branded himself as an intimacy expert. LOL. I’m sorry what the fuck makes a guy an intimacy expert? He has videos on his YT on “how to kiss a girl” and “how to get a girl to sleep with you” lolololol. Wtf? Narcissist much?

Ok so that’s the problem, I know he is a narcissist, and that’s why I am attracted to him. I don’t know when that happened, I don’t even know if I am attracted to him, all I know is, he is asshole, therefore I want shag him.

There’s nothing intimate about that. I don’t even know why my body has just been having wild fuck dreams about him just now. All I know is I must. So I reached out to connect with him. Bet he thinks “I must be converted” to understand intimacy and his godly ability to make girls want him and open up and enjoy straight sex. Blah blah. But I have my caveats.

Ok so one might be thinking, he could just reject me right? He could find me unattractive and not even get the horn on for me. Well. That’s true, I’m not worried about that. The point is, he is an “intimacy expert” and I could literally make a transaction with him. I’m a challenge. I don’t do intimacy. Maybe it’s because I’m an SA survivor and shits all shit so there’s no hope so if I can cum there’s only one way to do it, my way. Unless he can figure out another way.

Anyway, I will straight up ask him for a sexual play date. He might take me up on it. I want to film it just because momentoes, memories, OnlyFans etc. but if he plays his cards right he gets more content on his “sexual intimacy” channel on dealing with an SA survivor. I have nothing to lose as I’m celibate until I actually ask someone and follow through with my own weird fucked up fantasies.

And he might just like to chalk up another “intimacy” challenge on his bed notch. Does one see how much of a simple transaction this is between narcs?

I use the word without derogatory connotation, I don’t generally think highly of guys, especially ones that think they are all that. It’s a shame I’m attracted to assholes in general. They are assholes. Good guys don’t act like that. Seriously? Who the heck are his clients? I really want to know. Wait “how to kiss a girl” means he’s attracting incels. So this is a narc selling himself to … other assholes? I am probably totally unfairly judgemental and wrong here. But surely only couples need intimacy coaching, people in relationships to begin with, but wait, why would they approach a single guy who’s never held a long term relationship about solving their intimate marraige issues? Hmmm

I don’t get it. No Tari is going to have to explain to me who his clients are. Cuz it just doesn’t sound right. I’m skeptical. Are there real clients out there? I gotta do some cold recon 🤣🤣🤣

Link to his channel, please drop your thoughts. Am I wrong when I say this guy is an asshole? Because my loins say so and my loins are literally Narc-far. Literally only narcissists turn me on. I have the subtle sensation of getting juicy feeling that this guy is some sort of creepy abuser, freaky fucked up yoga instructor, and in the past that’s why I always stayed away from the 6th sense of danger. It’s just now I’m grabbing it literally by the balls. I want to cum first. Period. That’s all. Maybe narcissists we actually that narcissistic about sexual satisfaction they would be afraid of being perceived as a bad fuck, or a selfish fuck. Maybe that’s what I find attractive about them.

Narcissistic sexual prowess to be the best so that no girl would shit talk him about his cockadoodledoo.

Ok link.
https://youtube.com/@Tari

ICS

Onnaloves example to be mummified in packing tape

I was reading your post right before this one, where you discovered Chinese soups that strengthen the blood are beneficial when your auto-immune responses flair up.
I had the same positive experience withe the Chinese approach on auto immune diseases.

While reading your post I asked myself if it would be okay to share other “treatments” that do improve my condition.
But there was hesitation…
So I moved on to your next post and pars of it caught my attention.

Onnaloves I spent 4 hours edging and didn’t cum but it was the best hormonal release I’d had in years

I am not surprised that it gave you a hormonal release and so a release of tension.

There is some kind of therapy where you get wrapped like a mummy but not with tape.
They use bandages soaked in clay. These bandages are wrapped around your body in a very specific way. Not to tight not to lose…The start is at your feet.
Next you rest. In the days that follow you are not allowed to take a shower. As the clay is absorbed into the skin may continue to do its work in the three days beyond the treatment. And in these days it is good to drink some extra mineral water.
Clay seem to be beneficial to detox the body. It stimulates the lymphatic system.
The way they wrap the body with these bandages do also stimulate the lymphatic system.
Clay is also “earth”. So maybe it helps to ground better as well
But there is even an emotional need that gets fulfilled. To be cared for in a gentle and tender way.
And I think it is similar to how mothers used to swaddle their babies in earlier days.
To swaddle babies was common in earlier days and was beneficial to the new born.

So your “twisted fantasies” as you name them, may actually contain information on what your real needs are and even on what could be beneficial to get those needs met and even benefit healing…without bringing yourself in difficult situations.

Onnaloves

ICS I have not been in here for a while as I’m dealing with bad news.

I work for a cult. (No bad feelings against the company but that’s what it feels like). Meanwhile, I’m processing a diagnosis I was given two weeks ago that puts me in the statistical category of having 2-3 years before organ failure. The tumor that was removed a year and a half ago was a sign, not a near miss. My husband has been terrified since googling the disease. And outside work I am bedridden. I live for work. And I need a better strategy.

Advanced systemic mastocytosis is a disease of the immune system, specifically a type of blood cell that has gone mutant, invaded organs and accumulated to the point of crowding out and suffocating and strangulating parts of those organs. They are produced in the bone marrow, where they are being overproduced due to chemical signaling and bursting through the bone leaving schlerotic bone formations that tear into my muscles. Like coral type structures that eviscerate tendons.
These mast cells have invaded my entire gut, and are activated to command more immune activity into the gut wall, swelling it up and stifling my breathing, blocking biliary passages, and causing ruptured and scarring that lead to more damage. My liver is bloating, my spleen suffers ruptures due to its enlargement from the over production of immune cells. There is now blood in my urine. It is hard to breathe. I am going through an acute and chronic flare.
The good news is, I have managed to abate symptoms using green bean sweet gruel, with snow fungus and black fungus, pandas leaves and coconut. Somehow, this recipe has helped my liver.

There is also another bean gruel I’m using with Chinese pearl barley, glehnia root, licorice, Dong guai, ginseng, garlic and ginger, boiled into a gruel that helps calm the immune system and get rid of the edema.

I don’t think I’m going to be a 2-3 year terminal statistic. I’m researching a lot ways to arrest the mutant epigene upstream and downstream of the mutation by looking at the pathways the disease uses to metabolize it’s crazy over activity, and trying to find suitable herbs that can block certain receptors. I’m looking for certain characteristics of this herb, and feel like I can find what I’m looking for.

In the meantime I’m having a bone marrow biopsy to determine the stage I’m at, since it’s already advanced and systemic. The thought of only being around for another half cycle that I have lived on this forum is weird. I started here 2 and half years ago? That’s nuts. So the next half of my journey we will find out if I survive the next half life on here.

I’m exactly at the halfway point.

I got my shit together and got a job. Only to be fated by the medical system with no options left but palliative measures to alliviate my symptoms until organ failure. I am not waiting for the medical system to bookend me after taking so long to diagnose what was wrong. I have researched so much already that I believe they don’t know what they are doing. So I will figure this out.

Sorry about the bad news. It’s give no fucks time. Amazing how a diagnosis changes oneself. I take no shit anymore. INFACT, I have cast away friends, fuck buddies. Not that I really had a bunch to begin with. But now I’m happier in a way. I don’t wait for anyone to do right, I have to do right. And that takes a lot of pondering and reliance on anyone away.

I haven’t told anyone my diagnosis except privately here @steveoscar ive changed a lot.

Onnaloves

Well. I sneezed today and felt like I ruptured something again. It was agony.
I noticed a pin-prick rash on my chest which has been steadily speckling my abdomen and chest, upper arms… I thought I had sunburn from swimming when I first noticed it 6 months ago.
But it didn’t go.
So I googled it thinking it was just age freckles.
And found that it’s one of the signs of leukemia.
Mast cell leukemia is the most aggressive form of advanced systemic mastocytosis. And people survive on average 6 months before multiple organ failure.
Great.
This bone marrow biopsy isn’t going to tell me what don’t already know.

Imagine if one knows one only has 6 months to live.

That’s what I’m processing right now. I have run out of time to reverse this.

Onnaloves

Well Keith told me he hadn’t slept in days since the pathology results came in. Because he was terrified. I self certified my life insurance today at $300,000 lol. It’s pending and it might get accepted this time based on the fact that I haven’t taken any time off sick from work.

I saved all my holiday pay and cashed it out on medical bills. I cashed out my 401k savings also on medical hardship. And prepared to hear the worst, the doctor went through everything today.

She said; the thing is, most people with your signs and symptoms are, how can I say it. She struggled to find the words as something didn’t fit.

They are very fragile people - she said. And you have all the signs and symptoms for diagnosis but, you just aren’t that ill. She was not dismissing me. She was genuinely perplexed. I assured her, I am in a lot of pain, even as we spoke. But whatever, she needed more tests as I look I’m her eyes, too healthy to be this ill.

I didn’t tell her I’ve been doing medicinal food from Chinese recipes. What’s the point. I’m doing the best I can. Maybe most people don’t and they let it rapidly progress. Anyway, she ordered a boat load of tests, including a referral to dermatology to rule out something on my skin. The lesions that won’t heal, the strange freckle pin prick rash. All signs for something not in her area I don’t know.

But now Keith is relieved. I have medication to target specific mast cells in the gut, to suppress them, and a whole new batch of blood draws and DNA testing to find out which immune protein genes have mutated.

Meanwhile, she asked something about mold exposure. And I revealed the job I had been doing for 5 months this year at coughd!scoughney. Which began to sound ominous as I spoke it.

Three months ago I asked management to pull me out of maintenance- “I quit, redeploy me, take me out of here”. To which their inquisition unraveled a rather nasty investigation in which J-say No name got fired. And of course I get burned with a verbal warning, because you know big companies have to protect themselves and push blame onto their ordinates.

I went into a deep spiral of stress but somehow came on top when I was given an opportunity to pitch something to the area manager, who then immediately gave me a non promotion of a no position role, with no salary, and no title, to fix this problem. I duly went and did it, and submitted it to patenting along the way, I am still project engineering yet unpaid for it. Things are precarious.

Last week I did a presentation to 4 levels up management… now shit is getting real, I’m still on base pay no salary, no promotion, donkeying my ass off to solve a problem… but now safety is involved. I did some bioburden testing and found… some dangerous mold.

Thing is, I was working in this environment for 5 months unprotected. And now management are freaking out that bioburden tests reveal something? They wouldn’t take my word initially, and now they are doing safety tests independently to verify what I found. Which they will also find.

But I’m sick. And I have never called out sick. Instead I’ve come into work chronically ill trying to solve a damn problem that shouldn’t exist. I should stop writing, I just needed to get this off my chest. The therapists I’ve spoken to are paid for by the mouse. So they aren’t giving me straight info looking after my well-being. They look after the company.

How did I get this sick? And why must I be crawling on all fours for anyone, even a doctor, to believe me, even when pathology results are right there?

Anyway. Keith is reassured enough that he is breathing a temporary sigh of relief. I have more than 6 months. At least two years. Nothing is official until it is official and this doctor is delaying. She searching for something else. What if I could snap my fingers and imagine none of this was happening, the pain isn’t there. The signs aren’t there. And I’ll wake up one morning without the bone aches and strange rash, and terrible gut aches.

I drew a body map of all I suffer with. The doctor put it in her notes to go think about.

Onnaloves

This disease is progressing with no abatement yet. But I still have hope. Last week I stayed awake the whole night because I was fighting to breathe through the pain of my swollen liver and spleen, that radiated pain into my back. My oxygen levels dropped to 80% and I lay still and stayed awake on the verge of passing out. I kept thinking, if I fall asleep somehow through this pain, I’ll pass out and I won’t wake up. I saw the doctor the next day and was prescribed an epi pen.
And then a chink of hope. Adrenaline and epinephrine is the fight flight response and also with intense exercise. I always felt better after my water ballet but now that’s become impractical.
So what if I did a cold plunge to stimulate epinephrine. Also, we need vitamin c to produce epinephrine… and I realized I must be low on vitamin C. Because I am so overloaded with histamine, natural levels of vitamin c are depleted just to metabolize the histamine. Therefore I need 3x as much as any adult but I am probably insufficient anyway.
So vitamin C is my antidote to all this insane histamine response swelling? Except I mustn’t have the ascorbic acid form or citrus form of vitamin C, as that breaks down to additional histamine….
I found low histamine sources of vitamin C this week, but a few mistakes were made. Multivitamin gummies trigger the histamine response so I can’t take those or once again tummy ache and diarrhea. But I’m slowly finding things that work.
The swelling has not stopped but the main thing is, I have found days where I am eating more apples and Brussel sprouts, I have more energy to fight. And the tummy pain is less.
I’m still too fatigued to try the cold plunge but I will soon.

Results are still not back. But the primary care saw some of them and upon my presentation and the petechia rash, told me to just be prepared for January.

My life insurance was rejected and that prompted Keith to show his true colors again. The man is just waiting for me to die. Except he won’t get anything
Now. So I chuckle.

Still not told either of my daughters. They haven’t reached out to me either way.

Onnaloves

I’ve been referred to the head of Oncology, something near my spleen ruptured again Friday night and left me nauseated or asleep most of the day yesterday.
I spoke to the clinical trial nurse letting her know that since we last spoke, about self advocating for this illness in order to get a fast diagnosis - my immunologist chose to be conservative and slow-walk the process.
She didn’t know me, never met me, and decided to put in my notes that she “educated me” on the difference between MCAS and Systemic Mastocytosis. Bitch. She even said to me “you don’t look ill enough” well. When this shit happens, I used all my resources to ask my primary care, for anything to speed up diagnosis, and he said quite literally…
USE THE REFERRALS
doctors in their speciality only have to put a nod I. The direction of this disease for me to be taken seriously. And with that, the dermatologist looking at the lesions across my body… I was unaware she was head of school but she was shadowing a doctor while examining me. She said;
“Now this is a classic presentation of advanced systemic mastocytosis which is a rare disease. I’m fact no one is able to treat this disease so we have Ed. You know Ed? Well he specifically requested to take all the mastocytosis patients because of his work. INFACT make that an urgent referral…”
I was right infront of her and go smacked she said that shit infront of me. GRATEFUL SHE VALIDATED ME and my suspicious mind, witb great reason behind it.
So I was called yesterday and scheduled to see this Ed. Who happens to be some chief of oncology.

Onnaloves

I got my clinical diagnosis today. MCAS.
He spent 2.5 hours with me going through my history and diagnosed me on the spot.
None of this bullshit testing which I’ve been through. He said the results mean little because this disease is related to life history.
He asked me to tell him my earliest memory of being healthy, when was I last “healthy?” He asked.

I honestly had to think hard about it.
I said 5. I was 5 years old and everything seemed good then. I was at a new school when suddenly…
I remember being so constipated that my mother douched me with soapy water, and gave me enemas. I remember blood and awful itching and infection. I could not bear it. She kept me away from the doctors trying to treat it herself, I was urinating blood.

So then I was prescribed a bunch of drugs and they blamed it on my school tights.
Then we moved quite suddenly. My parents were away for a few days while they separated us, the. We moved home.
And I suffered hives all over my body so my mother painted me from head to toe in calamine lotion. Which at that time smelled like phenol.
Then I was prescribed antihistamines. Steroids. Ongoing for years.
I became avoidant of bananas, I used to fist my ears with the pain that would go up into them - unless they were green bananas, I could eat those.
I shat myself at school. Diarrhea through my clothes. Unexplaimed.
I ran away from home and the painful rash covered my body once again, undiagnosed.
I became colicky and had nerve pain when I pooped.
When I was pregnant with my first daughter I was so excruciatingly nauseous over the smell of tomatoes and sardines, let alone eating them, that I developed blood in my poop, and I was hospitalized under stool watch. Then had to have an endoscopy and colonoscopy without sedation to protect the baby.

No results.

Pregnancy gave me fucked up illnesses which they treated with steroids.
Same the second time only worse.
My children were kidnapped so I left the Uk.
Philippines I vomited green and diarrhea same color. Hospital 5 days undiagnosed. Insane levels of pain.

Then fucking Austria. I became delusional, lost my mind lost my speech. All with the excruciating poopy pain. Keith room over the rest of that history because I couldn’t remember after that… then the pandemic happened and I documented most of that in here. I was recovering a lot from my delusions.

Until we are here now with a repeat of the incredible pain…

And with that enigmatic history, he gave me his clinical diagnosis.

He explained there are histamine receptors in the brain, that can cause everything I reported neurologically. He told me I verified I can become allergic to “anything” with one of my stories where I put soothing cream on my welts, only to develop allergies to its ingredients and cold no longer use sun block or lipsticks.

But after three months or so, my body can forget the allergy. Except, that isn’t happening now.

I think I’m allergic to sex. I recently experimented and it put me in so much pain I gave up thinking about it after that. The MRI specifically noted my enlarged uterus in the ER, that was gone by the time the gynecologist scanned me.

Motherhood trauma of losing my kids is one of the weirdest allergies. I breastfed my girls for 4 years - two years each before I was just so stressed I couldn’t handle it anymore, my nipples were screaming at me. 6 months later my girls were kidnapped…

And to this day, whenever I cuddle my bunny like a baby, my nipples turn into red acorns and bloat and peel and leak blister fluid. Keeping me awake at night from the insane itch that isn’t thrush. It’s like I’m allergic to the memory of mothering. As though the memory itself causes pain my body blames the environment for. It’s a weird association which I only realized AFTER this doctor validated how ill I had become.

Treatment plan is in place. Gotta stick out the next four weeks. Survive this.

Onnaloves

I just scanned over this, there’s a bunch I’m delving into to finish.
Mostly I read it and cringe. Not sure if it’s valuable anymore but I’m going to pick over it and see what comes out.
My MCAS has metastasized I’ll be needing multiple surgeries in the next few months. Hard to explain I’m a nutshell but the medical system is slow, by the time they’ve done the cancer staging I’ll already be prepping for my first surgery.
Going to have my hip revision phase one, my usual colorectal cancer screening (not looking good but I have time) and, there’s a nasty load of blocked lymph nodes on the MRI…
I’ve been signed off on medical leave and will be in a wheelchair within 3 months. The revision surgery has to get the junk out my system that is precipitating the metastasis. I have yet to have it biopsied.
But it’s in multiple locations.
Strangely I have no fear at all though. I’m fighting hard. I figured out how to drain my own lymph, it makes me feel pretty wretched after, and my spleen goes into system dump mode and I have diarrhea after. I’ve lost a bunch of weight (10lbs in two weeks) because it’s hard to eat through the nausea and gut pain.
I did all my end of life decisions a year ago, so not really scared, I keep thinking I won’t be that number.
I learned a lot to fight the disease back into remission, but it came back with vengeance starting around October.
And I know why now.
I have learned how to free myself from stress and anxiety, but in the absence of what is stress and anxiety, I realize I have lived mostly my entire life 100% anxiety.
Post menopause has set in along with the cognitive dissonance that as I emotionally healed, I became aware how very little my husband is present with me. How he attacks me and dumps on me and argues with me, when I merely state the facts. It’s like he is so I healed and not doing any of his own work, so I stepped back and decided why bother?
Lifestyle divorce.
I no longer share the same room with him.
He doesn’t step up to my needs. I have learned to live without him. He is disconnected at the emotional level and vacant.
I have done everything to take care of his needs, and when my time is coming… he purchases $300k life insurance on me. I don’t feel anything about that it’s irrelevant. That’s what he needs. But, he does nothing to help me on a personal level, so I have withdrawn from him completely.
It’s ok. I don’t feel alone. I am very much in love with what I have achieved in my life, and will spend the next three months writing my book.
I’m sure I’ll make it. I won’t know the staging until a couple weeks from now. They are really really slow.

Onnaloves

Oh boy I was under some illusion it would take a couple of weeks haha. My first surgical biopsies are end of February. No joke. The radiologist omitted analysis of the pelvic organs because the primary care physician instructed the DX on hip pain. The radiologist missed the cause of the hip pain, and missed the cause of my bowel blockage in his entire reading.
My ortho looked at the MRI and showed me where my muscles need aspiration and debridement. He then plopped the cursor on the mass and told me I need to get a radiology report…
Same as my oncologist only they got the c-class student report who missed it all, so I ordered a second radiologist report - and my oncologist still hasn’t submitted for the second DX.
Here’s the screen grabs just so you know how big this thing is. I can feel it with my fingers every time I go to dig it out.
Will upload from other phone.
Anyway, I’ve been pummeling my lymphatic system with infrasound from the jacuzzi nozzles to get the lymph circulating. I unblocked it, my immune system saw it, and started attacking the cancer… making it swell so big that I endured such pain and couldn’t shit at all because I was essentially sealed off and backing up. So I fasted for three days. The swelling started to subside. The lymph overloaded my spleen and I had diarrhea for days, with pus.
Because the swelling inside was so bad, the pus has somewhat dried out into a waxy snot.
My body is trying to digest something the size of a hamburger, outside of its stomach… I go around smelling like bad meat. It’s leeching through my skin. I also smell this strange metallic smell - I’m my head, like I’m my sinus. My blood is really off. The immune cells are digesting something and overloaded, and there’s not enough capacity to rid it through my liver, so I’m nauseated a lot. The waste material feels like my blood is bearing a heavy burden, which sinks down to my thighs, and bursts through the capillaries within the skin. I feel like a million splinters are coming through my skin on my thighs sinking down to my knees, the same is happening on my inner elbows.
The pain and discomfort at night when my liver wakes up is unbearable. I can’t sleep. The burning cancer itch cannot be soothed… it’s as though there are a million itchy pin pricks of crystallized waste metabolite coming through the skin like sharpened grains of salt. They grit, and it feels like tiny hard things are comin out of my skin.
Lymph nodes on my face have turned dark, and on the inside of my cheeks in my mouth there are growing skin tags that feel like ulcers trying to explode in my mouth. The tip of my nose turned black, and under it, debris like pieces of rice came out the skin under my nose tip. The black peeled off like a scab of dead skin.
When I quit work, my body gave up masking and found the cancer, but it’s attack feels 10 times worse. I know that my body is gearing up and fighting it, but I don’t know how to sustain this fight for the weeks ahead before biopsies.
The mass appears to be in the rectal wall, and outside in the pelvic bowl, and possibly attached and invaded part of my uterus.
I know it’s also present in my stomach. I recognize the symptoms from a tumor removed 4 years ago.
In the last two weeks of pummeling my lymph, I have strengthened the connection to my body by doing cold plunges, and now, I have a definite sense of where the cancer is. It spread from my left side, down to the right and back up the left side, made it as far as my stomach… which suggests it’s an endocrine based cancer.
I’m ok I know I can see and feel it now. It feels very “friable”. This cancer does feel like it breaks up rather too easily and moves around the body freely in my lymph. The danger is if it settles like it has been attempting in my face. But my immune system knows it’s signature and attacks it.
I still have know fear of it because I’m tracking it, by becoming more and more aware of my body and the vacancy or void that exists as the cancer. It feels strange like a body full of heavy “egg yolks” on delicate suspensory ligaments that keep breaking rather like when separating the yolk from the albumen. It’s really uncomfortable. My pelvic discomfort with the ligaments twanging with fryable easily breakable tissue is gross. It junks up my blood and lymph and my skin feels painfully itchy and burning. Like I’m allergic to water. The hardened tiny goosebumps, look like a million pin pricks when I press them.
And the smell. I can’t stop the smell.
Keith is finally acting like he’s afraid. He smells me and knows this is real, it might take a few months for diagnosis and subtype. But I’m fighting it now so I really don’t care what they find. I’m more annoyed that everyone ignored my complaints for a year. Additionally I worked so hard because I have a useless husband who doesn’t take care of me.
I take my disability scooter out on an errand with Beano the giant bunny on my lap. He feels the wind in his ears and enjoys the ride. It hurts to walk.

Onnaloves

By the way. Living with a narcissist causes cancer. Keith caused this. Babysitting his emotions caused this. Holding back my truth because it gets him all riled up and arguing caused this. I fucking hate him.
I tell him I fucking hate him.
If I die I’ll proudly destroy him by leaving this record of his bullshit.
Fuck him.
I’ve literally screamed at him every week since I’ve been off on sick leave because I don’t give a shit.

Onnaloves

EVERYTIME I check back on this and see a rollercoaster of emotions I’m shook.
My oncologist has tried to speed things up. I’ve let go of a bunch of negative emotions like bitterness, anger, hate, using forgiveness or whatever.
I don’t really have the time to think about anyone else.
I’ve accepted this, and am living in the moment for most parts. I started livestreaming my moments just incase I survive and there’s a record I can edit of what I did.
If I don’t survive, maybe it will help someone I don’t know.
It’s converging into a rare form of cancer called Sarcoma. It’s aggressive. I’m weak now. Pathology is beginning but I’m pretty sure they have still missed the mark.
My ortho doctor this week is a new one under special instruction from the oncologist - who has started quoting me in my medical records. So they are hearing me, using words not typical of other patients.
The new surgeon has been directed to find biopsies from a number of new lumps. Which are appearing all over my body now. The back of my leg, my shoulder, upper arm, my scalp, my eye orbit, my jaw,

It’s in my lung, it’s wrapped around my stomach, yeh, it looks hopeless and honestly there isn’t a formal diagnosis yet, even though we know what’s coming.

I’m fine. I’m rough. But I’m mentally weirdly enough totally fine. I crawled in and out of the jacuzzi yesterday after working on my tumors. It worked, I have the shits again so I’m relieved. Every time I do a certain amount of work on pick a tumor - my immune system does a purge and enables me to shit past my blockage with diarrhea.

My nutrition is really good, I know how to replenish the immune system I’ve had practice for two years lol. My go to foods are sweet mung bean gruel with seaweed and black fungus.

And lotus seed and Chinese almond tonic which is more of a stew with about 10 herbs. I do the stews as nutrition - it’s not strictly “medicine” but I use it to replenish the immune system.

I do a lot of fermented teas like pu’er, with goji berries, I do a lot of preserved duck eggs, Chinese herbal congee with preserved tianjin cabbage, paper shrimp, female ginseng. I started livestreaming how I’m actually muddling through -even when I’m rough as fuck.

And importantly, even though I’m rough as fuck, crawling, sometimes unable to walk. I’m really happy. I just love being alive right now and feeling my body fight. It feels lit up like a Christmas tree of many battlefronts. I’m picking my battles, and cycling through the immune system firing up and purging in waves that have a mesocycle of a few days.

It hurts terribly.

The pain gives me comfort and guides me within my limits where to go, where to be gentle, where to let it do it’s job. My introspection is super high resolution. And now I know why I can’t feel emotions.

There is not enough room to process amongst the white noise of this immune war.

I’m at war, and internally directing several battlefronts whilst keeping my resources nutritionally supplied. That’s tough. Sometimes it’s ok to just not speak.

And I love this war right now, I’m grateful I learned to control my body in ways others can’t imagine - because they never spent time in the void.

I’ll drop a livestream;

Onnaloves

I limp back from the pool. The nerve fatigue of maintaining contact with my body during the metastatic battle where erosive calcium crystals precipitates out of the bone into the synovial fluids and blood in order to try and buffer the inflammatory reaction of collateral damage while the immune system tries to digest cancer…
My nerve sheaths wear thin, muscles shiver and lose impetus when I command them. The pain signals come through, and my mast cells are activated to degranulate the correct response this time.
I just reached another point in my immune cycle that lasts 3-5 days, where I have to provide nutrition to the nerve sheaths to maintain the map of the battlefront. I ate a curry pad Thai of my own recipe, made with 7 types of mushrooms, lily flower, bamboo shoots, lemon grass, tamarind, fat rice noodle stick, coconut milk etc. and this recipe has all the neurogenesis for re-myelination and strengthening of nerve sheaths. Plus, providing the immune system itself with tooling to replenish itself.

Before I hit the pool, I happened to be describing a bunch of sensations inside my body. Prior to this? Any attempt was poo pooed and dismissed as though I couldn’t possibly know what was happening in my body. But this time, Keith quietly listened. I described my immune system mesocycle, how it returns from the battlefront through my liver to drop off any useable cancer metabolites like proteins to re-use in the body, but mostly it’s junk and makes me feel quite nauseated.

Then my spleen takes up the rest after the kidneys get a little irritated from the calcium rich filtrate. My bottlenecked organs that can’t work fast enough end up giving my skin the prickles as the crystals get stuck in the skin. Tight skin around the rib cage feels like it’s going to tear from a thousand needles, while it burns and itches with the cancer itch. But it’s ok? It’s just part of the mesocycle that I’m fully aware of. The relief comes when my spleen acts like a release valve and does a system dump in my descending colon, enabling me to wash out my poop from around the bend where my colon is strangled by cancer. And then I start the cycle again, or at least usher it through until I’m ready to replenish the immune system or give my organs a break. It all depends on how irritated my kidneys get.

While speaking this out loud. Keith came up to me and hugged me and said he didn’t want me to die. He knows if anyone can fight this, I might have that chance, but, he’s been googling and this sarcoma is a slate wiper. There is supposedly no hope. Ugh. So I just live in the moment and hope I can run the marathon of gaining ground on my mummified organs.

The cancer grew this far, I have to digest it backwards, and that’s tough. Chemo might not be available for four weeks yet… and in four weeks, ugh. I have to sustain. It’s hard against the consumption against me. I’m getting weaker. As long as I can maintain neurological mapping, I am in command of where to send my troops, which order, etc. so I map my body everyday, using balance, dunhuang dance technique, handstands, one armed balance, planking etc. i know most people can’t do this, but it’s something I’ve learned that once the body is mapped in the brain, one can’t unsee the cancer. I’m not blind to it anymore, and I know exactly how to use the hormone drifts to my advantage.

I feel quite powerful, even though I have a weakness. How is that possible? Where did I learn it? No one taught me. How did I know? How did I figure out this was my gift of intuition? It’s never served me in real life very well. But now that I am riddled with cancer, there is a purpose for this non-emotional brain.

Feeling the white noise Geiger counter, has lit my mind up in ways I have never felt before. I have had sensations, throughout menstrual periods, child bearing, birth, hmmm hormonal cycles. The flow in my brain!!! Omg! My brain has never been this lit.

It used to be fairly dark upstairs, hard to get flow into the peripheries of my brain. But right now, these last two weeks. My brain feels more lit and full capacity than ever. I’m fully aware. Even outside my body there is a resonance with nature. Nature acknowledges me in the strangest ways. Butterflies land on me, birds heckle me, and I feel seen as though we are sharing the experience.

And Keith being scared, I get it. I just don’t feel anything now. No fear. Just calm. I’m sick but I’m in a perfect headspace of peace.

Onnaloves

I’ve been loading up on videos from hospice nurses on what to expect when dying, and how to die a good death. It’s been very very comforting. I separated my lifestyle from Keith back in October last year, and he never made any effort to change. I would pick my battles just to be heard, he would often feel like I was attacking him - as he usually does, and block from hearing me by dismissing me.

Now he’s silent, he doesn’t argue back at me. He just knows it’s the last time he’s gonna hear from me so he shuts up. I feel at peace. I feel self validated. I don’t need anyone to hear me now so I’m livestreaming to the universe as I tell anyone and no one what is happening. And merely finding the words or exercising my ability to explain my sensing, is helping me feel my truth out loud. It’s practice before I slam Keith with the details of this cancer consuming me. I’m hyper fixated on it yes, but that is guiding the battles. I have to keep holding the front line and not allow it to progress.

The mummification of my stomach has eased a little. The constant tearing of the fryable clumpyness has released its grip on my stomach a bit. The nausea is not as intense, the pain of tearing at the clumping is unusual, like a permanent bruise that I measure how much is good and bearable.

I know how much is too much - my organs get overloaded and the discomfort of bottlenecked organs is unreal. I can’t walk anymore. I crawl and drag myself around the house. I can get to my legs and stand up, but the risk of falling is high as I lose contact with my legs, so I stay mostly on the floor.

A neighbor helped me to the pool the other day.

A tiktokker announced her death 6 months after she was diagnosed, she knew she had cancer for two years prior to diagnosis. She died at 24. Another tiktokker passed away last week of the same rare sarcoma, she was 31. Cancer journeys have become a bit of a crazy follow trend on social media amongst young people sharing their journeys. I think the genuine fear of cancer is a generational trauma. Somehow, it’s becoming more common for young people to be affected, and the weirdest thing is, nobody is connecting the dots.

It’s years of stress that causes it. Years of stress that mutates the immune system until it goes blind to cancer. We all get cancer in our bodies, but our immune system tracks it down and shuts it down. It goes unnoticed. The new generations are subjected to levels of stress our forefathers never suffered. And no one is speaking out for them.

Social media is embuing people with narcissistic abuse. Hurting them. Stressing them. By destroying core values in the brain that protect us from dis-ease. Social media disrupts emotional regulation by teaching us emotional friction is more valid than knowledge, wiseness, the ability to process slowly and patiently.

It is these disruptions to the brain, that create a permanent state of stress and the drip drip of cortisol release akin to permanent gaslighting and emotional abuse. This is why young people are dying of cancer and acquiring rare diseases like never before.

I would periodically shut down my social media because I felt the narcisstic pull of people draining me for more content. It’s icky. It’s eye rape. It’s normalized. It’s disgusting behavior and it harms our minds.

The west capitalizes on eye rape. They now sell “ai” model agencies with fake girlfriends to make social profiles as influencers that have no contracts and are easy to handle and put out there. Women don’t have to do it now. But the point is, these fake AI models destroy our youth. They set up men to believe in perfection. And set up our teenagers to believe they are never enough.

Social media is causing our early and rare diseases.

No one has figured it out. No one knows how to fight. The mental illness becomes physical in the form of a disrupted immune system that enables cancer in all of us, to blindly grow.

If I am right, and I started my fight in time, this is my message to the world. If I started my battle too late, I die anyway. If I’m actually not winning because the sensations I feel are not real. I’m dead.

The only choice I have is to save my energy for me, and for those facing mortality to give them peace somehow. Three months ago I was limping around at work. I was in agony and permanent nausea. Now, I look so much worse, it’s hard to believe I could survive this. And that is why Keith stopped arguing with me and being defensive. What’s the point? I look like I’m dying. So just shut up and listen. Just shut the fuck up and take it in.

Lol. He doesn’t understand why this has hit so fast. But it hasn’t, I’ve been diseased for years and I was unheard. He was not a safe place to be heard. He was a defensive argumentative man brat who couldn’t hear me. Literally EVERYTIME I tried to say anything, he would twist it as an attack on himself.

Also, there are other signs. He always thinks he is intentionally being left out. He thinks people don’t like him. Funny that. I never preoccupy myself with whether I think people are disliking me or intentionally leaving me out. I’ve lived here for two years and made friends at the apartment complex… Keith, hasn’t. He makes no effort. And then he thinks people dislike him, when he makes no effort. LOL.

Disordered.

He seems to be listening to me now, but I don’t care about him anymore. I’m living my own life. If I survive, I’ll carry on seperate. I don’t need him for anything. But I’m not cruel enough to kick him out and tell him to go away. His punishment is to wonder what it is he did wrong for the rest of his life. I’m ok with that. He might possibly not though. His core self might not change. His cash cow is gone.

I care for him even if he was a stone cold pig to me. Why is that? Because I don’t have it in me to be sadistic and intentionally hurt anyone. They do that to themselves, I don’t need to. All of Keith’s “hurt” was his own doing. And he deserves it.

I will try to sleep now. Pain is always worse at night.

Onnaloves

Keith thinks I’m gonna live, so the emotional abuse starts again. So; I posted this on FB. It’s private only he can read it. But it goes public if he hurts me a single time from now on.

I’m done. If I live, why do I want him around?

Onnaloves

There’s something so decrepit about the way his mind works that since he saw that post, he’s been pretending that he got a secret look at my thoughts instead of acknowledging ME.

Also, just 3 things I noticed THIS MORNING.

I asked about leaf blowers. He normally complains about leaf blowers making noise and waking him up at 8:30 every morning. Except since I’ve been on medical leave, I haven’t noticed them - because they’ve gone electric and I’m home now when they do their rounds.

He started on a fucking lecture saying they were introduced in the 70’s. But I am asking him about DAILY observation. I asked him WHEN he stopped hearing the leaf blowers. He had no clue what I was talking about.

2nd. I told him the Netflix password he gave me didn’t work. He argued with me. WHY?

3rd. Beano was pissed at me that I left the room, so he huddled in a corner. I mentioned Beano was pissed that I left the room. And Keith went on to lecture me how that was viewed as an attack, like suddenly he knows how Beano feels. Well, Beano grows through it and let’s go, he doesn’t think I attack him. That’s what Keith thinks.

End of blurb. Just a few things I’m going to RIP INTO KEITH OVER at this so called therapy. I don’t like Keith and I just want a divorce. I need him to realize that sooner rather than when I’m dead

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