#the immunosuppressants and my disease itself

[vy-canis-melodis]

the following is a blog post, written by tanja, in the Bird HRT universe:

UPDATE and a cancelled article!

Hi all, it's been a long time since my last blog post. Here's the deal; I was in hospital. Long story short, some things went pretty wrong, and here I am, having to deal with a huge backwards step in progress then having had to retrace those steps with additional gooey complications and therapy.

Anyway, here's a journalistic article I was pretty close to finishing and submitting to actual newspapers before everything went down and I had to cancel it.

Rejecting Humanity - Or, How I Learned to Stop Worrying and Just Be Myself

As I write this, I'm sitting in the waiting room of a Hospital cross Research Laboratory in London. By the time you're reading this, I'll have been on my treatment journey for over a year. What treatment, you ask? Well, it's Humanity Removal Therapy. One year ago, I undertook a radical new procedure which slowly transforms you from human to another form. Perhaps you've seen strange creatures out and about; a snow leopard at the supermarket, a dog at the drive-thru, or a tuatara at the thrift shop. Or, perhaps, you haven't; as I write this, the number of patients might not yet have reached triple digits worldwide.

Perhaps I should introduce myself. My name is Tanja ------, and I am an Iberian Azure-winged Magpie, scientific name 'cyanopica cooki'. One year ago, I was fully human, and now I look like a hybrid between our two species. So, let me guide you through my world.

How is this possible?

A little over a year ago, certain medical circles revealed that species transformation had been trialled in mice, turning them into various other creatures, with various success rates from 20 to 80% depending on size and how different the target species was. Now, I'm not for animal testing, but when I heard that human trials were going to open, I kept that pinned to my calendar. And so, after a few months, I was able to finally sign up and have my first interview. Which was… short. Turns out, they had pretty elaborate ways of gatekeeping people who really meant that they wanted it from those that they thought would regret the procedures. They also had a little joke, based on gender HRT, where they would ask if you'd spent years living as your preferred species beforehand. Or at least, I think it was a joke. And then, I was on my way to becoming the bird I love.

How much did it cost?

Well, luckily for me, the NHS provides free healthcare. Then, due to this being a clinical trial, I get paid for being a test subject. Then, due to the effects of the medicine, I receive Disability Benefits. The treatment itself is… a bit of a legal loophole, really. This very article may well be the first you've heard of it.

Is it just a magic pill?

Nope! It's a mix of CRISPR, gene replacement, hormone injections, and surgeries over time. It's a real mishmash, at least in my case. For example, keratinous structures can be grown through selective DNA editing and hormones that stimulate 'hair' growth in specific areas in specific ways. Bone structure can also slowly be altered in some cases through gene replacement, though in some cases, surgery is needed. My back, for example, will soon be undergoing surgery to adjust the way the vertebrae are laid out. Some aspects just are too difficult to be done naturally, and so artificial parts and prosthetics are added. But this complicated procedure has an upside - it means that there is more customisation possible! For example, a Harpy would be a very specific set of applications of Bird HRT that exclude certain aspects such as the face!

Are there downsides?

Definitely. There's the immunosuppression that has to occur to stop new parts from being rejected. There's the high risk of cancers and other diseases to occur as a result of this procedure. There's just the risk that your organs will fail. Most of this is irreversible too.

Why even do it then?

Because, to that small number of people, it's so worth it. This is a new life, an opportunity to discard that uncomfortable human vessel and be yourself at last. For the vast majority of people, being oneself is being human, but that's not the case for everyone.

Is it going to be banned?

Well, that's hard to say. Governments worldwide are, I'm sure, now aware of this phenomenon. And I think it presents a threat to the status quo. This is something new, something scary, something intimidating, that shifts the power balance between subjects and governers. And it's not just because some people have become huge fire-breathing dragons - it's the meaning behind it. They've rejected the very notion of the social contract between humans and crafted a new identity. Do we still count as people? And that's really the question, isn't it. So much of the way government and society works is to split people into groups of those that are 'more' people, and those that are 'lesser' people - and that dictates what societal violences are permissible, for example. This whole new procedure will have to make governments rethink so much, and it can either be a source of worry for us, or a source of hope for everyone. We just have to be loud enough to be heard for who we are.

So what will come next? Well, I'm going to hop on in to my next appointment, and the Earth will keep spinning. My first set of wings has almost reached full-span, and my toe-dexterity is almost at where I was with hands as a human. With my next set of primaries, I may have enough of a wingspan to fly, if I keep my weight low enough. Meanwhile, Parliament will likely have a debate on the issue, as a petition to legalise the procedure has a few thousand signatures on the government's official petition website. I'll be waiting on that result eagerly.

If you have any other questions, I'd be more than willing to answer them!

[nicejewishgirl]

I’ve literally been up every 30 minutes and need to be out of the house and arrived at by destination by 8:30 along w/ taking care of everything related to my family/dogs/household. I should try to sleep for another hour… hell who am I kidding… another possible 30 minutes but then it’s always harder to wake up. ahhh the life of an insomniac. getting to sleep isn’t even my problem anymore (it used to be so bad) but it’s staying asleep that just is impossible (especially on antibiotics and some of my other meds). that whole saga in the notes.

[mrehkka]

Dib meets one of the tallest in person and uh... is actually rather awed. He kinda gets it now. Zim is like "see?! the tallest are great!"

The story that goes with this is that Dib becomes ill, but oddly, with a somewhat rare Irken disease (stemming from a long term complication from when Zim's PAK attached to him way back when, it messed with something internally in Dib's body). So Zim takes Dib along with him to meet Red, to get Dib some Irken medicine/cure. Red has a huge crush on Zim so he tends to give him whatever he asks for (or gives him SOMETHING anyway, if he can't give him what he wants), and Zim knows this, although maybe a little in denial about the actual crush part.

aka: the "Dib gets to visit Irk and experience a bunch of Irken Culture" fic :D

[crippleprophet]

[ID: the “wait, it’s all [blank]” meme of one astronaut pointing a gun at the other, edited to read “wait, it’s all celiac?” / “always has been.” with the word celiac in a groovy pink font. end ID]

happy celiac awareness month 💓🖤💓 folks expressed interest in my #Controversial Opinion, so here we go:

as someone who “has” non-celiac gluten intolerance, i don’t believe it exists.

this, as with all of my diagnostic opinions, is built from both health research & sociology, specifically the genealogy of (my) disabilities – how the labels we use & the divides we create between diagnoses are socially constructed. conditions don’t announce themselves as discrete entities; instead, labels are given based on, at best, current medical understandings of symptoms + clinical visualization measures (imaging, bloodwork, genetic testing, etc). conditions that were once considered two separate things may eventually be restructured under the same diagnostic label, & what was once considered one singular disease may be divided into separate categories, in response to new information or the new recognition / respect of existing information.

the issue with this system, though – with access to healthcare which is predicated upon diagnosis, which is itself predicated on checklists of symptoms & clinical visibility – is that we don’t know shit. our bodies are not required to present symptoms in accordance with the ICD 10, & chronic illnesses are very much an “ask four doctors, get five answers” situation.

for example: without any of my symptoms, imaging, or bloodwork changing, i’ve been diagnosed with active ankylosing spondylitis, ankylosing spondylitis that is in remission, fibromyalgia, & spondyloarthropathy. the only difference is the doctors: their belief or lack thereof in my symptoms, their familiarity with current research, & the diagnostic systems they abide by. under the NHS, it was definitionally impossible for me to have ankylosing spondylitis that was not visible on an MRI, therefore i must have been in remission, even as my symptoms were just as debilitating as before & treatable by immunosuppressants.

how this pertains to celiac: as with all chronic illnesses, symptoms of celiac disease are a broad spectrum. some people have severe growth impairment from a young age; others may only have minor skin manifestations. other common symptoms are vague & potentially attributable to any chronic illness, such as fatigue, depression, & gastrointestinal issues. crucially, though, damage to the small intestine is still occurring even in people with celiac who do not flare after consuming gluten.

following this,

the diagnosis of non-celiac gluten intolerance has nothing to do with symptom presentation or severity. it doesn’t even mean there is no clinically visible damage to the small intestine. rather, it just means you didn’t pass the test:

in my case, not only was the (notoriously unreliable) antibody blood test negative, but so were subsequent tests for the genetic markers associated with celiac.

two people with the same exact experiences can get put into two different boxes, solely based on bloodwork – but that’s not how genetics works. it’s pretty much impossible that only those two markers dictate whether or not someone has celiac, or any given disease, because genetics are infinitely more complex than that; equally, plenty of autoimmune disorders can have a genetic component but are not exclusively found in people with that particular marker (ankylosing spondylitis & HLA-B27, for example).

therefore, i firmly believe non-celiac gluten intolerance is celiac disease, just influenced by other genetic factors and/or antibodies we haven’t yet identified.

there are a whole host of issues created by the false divide of celiac vs non-celiac gluten intolerance, certainly including things i’ve never considered, but here are a few examples of what i refer to as diagnostic violence, the physical & social consequences of these forms of categorization:

celiac disease increases people’s risk for small bowel cancer. but if it’s been determined by the medical establishment that according to their criteria, you don’t have celiac disease, then you won’t receive cancer screening.

since a food intolerance is not considered an autoimmune disease, there is no medical evidence of an underlying cause of arthritis, for example, making it that much harder for people to receive diagnosis & treatment for autoimmune symptoms.

diagnostic paperwork & a letter from a doctor is almost always required to receive accommodations, & food-related accommodations are notoriously difficult to obtain at universities which require the purchase of a meal plan without sufficient gluten-free options, for example.

as a response to the dangerous ableism permeating societal attitudes toward gluten-free food, many people (diagnosed) with celiac fall back on communicating the seriousness of their needs at the expense of their undiagnosable peers. “it’s not just an intolerance!” i read over & over – never mind that gluten made me so sick i lost a significant amount of weight, my hair fell out, i had signs of multiple vitamin deficiencies, & i could only keep down liquids.

this is honestly the most blatant example i’ve come across of the complete arbitrariness of diagnostic categories, but it’s far from the only one, & i’d love to hear other folks’ controversial opinions – what physical disabilities do you tell people you have without a diagnosis? do you consider yourself to have that condition, or is this just for expediency of communication? how does your undiagnosability affect your interactions with community formed around that diagnosis?

your experiences are real, your symptoms are serious, & it is not your fault that white supremacy demands a categorizability which all bodies inherently fail. join the club – we’ve got plenty of gluten-free snacks. 💓🖤💓

[trustwellhospitals]

How serious is a liver transplant?

A liver or kidney transplant is a serious surgical procedure that involves the replacement of a damaged or failing organ with a healthy one. These procedures are typically recommended for patients who have advanced liver or kidney disease, and who have exhausted all other treatment options. While a transplant can be life-saving, it is not without risks. If you are considering a liver or kidney transplant in Bangalore, it is important to understand the seriousness of the procedure and to choose a trusted provider such as Trustwell Hospital.

The Seriousness of a Liver Transplant

A liver transplant is a major surgical procedure that involves the removal of the patient's diseased liver and its replacement with a healthy liver from a donor. The procedure is typically recommended for patients with end-stage liver disease, such as cirrhosis or liver cancer, who have exhausted all other treatment options. A liver transplant can be life-saving, but it is a complex and risky procedure that requires a highly skilled surgical team and careful post-operative care.

Understanding Kidney Transplant in Bangalore

A kidney transplant is a surgical procedure that involves the removal of a diseased or damaged kidney and its replacement with a healthy kidney from a donor. The procedure is typically recommended for patients with end-stage kidney disease, such as chronic kidney disease or kidney failure, who have exhausted all other treatment options. A kidney transplant can be life-saving, but it is a complex procedure that requires careful preparation and post-operative care.

Trustwell Hospital - A Trusted Provider of Liver and Kidney Transplants in Bangalore

Trustwell Hospital is a leading provider of liver and kidney transplants in Bangalore. The hospital has a highly skilled team of surgeons and medical staff who are dedicated to providing the highest quality care to patients. Trustwell Hospital is equipped with state-of-the-art technology and facilities to ensure that patients receive the best possible care.

What to Expect During a Liver or Kidney Transplant

If you are considering a liver or kidney transplant at Trustwell Hospital, it is important to understand what to expect during the procedure. The transplant surgery itself typically takes several hours, and patients will need to remain in the hospital for several days after the surgery. During this time, patients will be closely monitored by medical staff to ensure that their new organ is functioning properly.

Risks and Complications of Liver and Kidney Transplants

While a liver or kidney transplant can be life-saving, it is not without risks. The most common complications of these procedures include infection, rejection of the new organ, and side effects from immunosuppressive medications. It is important for patients to carefully follow their post-operative care instructions and to communicate any concerns or symptoms to their medical team.

FAQs:

Q: How long does it take to recover from a liver or kidney transplant?

A: Recovery times can vary depending on the individual patient and the specific procedure. Most patients can expect to spend several weeks in the hospital and several months recovering at home.

Q: How successful are liver and kidney transplants?

A: The success rates of these procedures depend on a variety of factors, including the patient's age, overall health, and the quality of the donor organ. However, the overall success rates of liver and kidney transplants are generally high.

Q: Can I choose my organ donor for a transplant?

A: In most cases, organ donors are chosen based on

[maaarine]

The Song of the Cell: An Exploration of Medicine and the New Human (Siddhartha Mukherjee, 2022)

“What happens when the major regulatory forces no longer keep the immune system from attacking its own body?

Around the turn of the twentieth century, Paul Ehrlich, the eminent biochemist, called it horror autotoxicus—the body poisoning itself.

The condition befits the name. Autoimmunity ranges from mild to absolutely furious.

In alopecia areata, an autoimmune disease, T cells are thought to attack hair follicle cells.

One patient might notice only a single bald spot, while in someone else, the T cells might assail every hair follicle, resulting in complete baldness. (…)

We met a thirty-something woman with scleroderma, in which the immune system attacks the skin and connective tissue.

 In her case, the illness had begun, as it often does, with a phenomenon called Raynaud’s disease, in which the fingers and toes turn blue when exposed to the cold.

“And then,” she told the students, “my fingers began to get blue when I got emotionally stressed or tired, even without the cold.”

My mind returned to an image from Shakespeare’s poem about winter from his play Love’s Labour’s Lost: “Dick the shepherd blows his nail,” as the wind howls around him.

But this patient’s coldness was internal, caused by spasming blood vessels in the hands and feet.

It was as if autoimmunity had created an inner freeze.

Stranger attacks fell upon the woman’s body: patches of skin began to tighten around her as the immune system turned against her connective tissue.

The patches turned shiny, as if pulled by some invisible force, and stretched across her bones. Her lips tightened and scarred.

She was treated with immunosuppressants and, to reduce inflammation, corticosteroids, which made her manic.

“It felt as if my own skin had started to bind me up, like a Saran Wrap folded around my body.””

[certifiablecatlady]

Medical/Life Update

Sup duders so I haven't posted a ton of personal info here in awhile but the past 6 months have been wild. Starting in December 2021 I've had a fluctuating rash on my arms, legs, and trunk that at first I thought was an allergic reaction, hence my post about having the worst "hives" ever on Christmas. After an emergency room trip on New Years Eve and month of phone tag I finally got referred to a rheumatologist in February and diagnosed with Henoch-Schonlein Purpura (HSP) also known as IgA vasculitis. Which is an autoimmune disease more common in children but super rare in adults where the blood vessels in your skin and internal organs/joints become inflamed. Usually it goes away in a few months and leaves no lasting effects which is good.

Except now it's June and it hasn't gone away. In fact, at my last rheumatology appointment 2 weeks ago they said my inflammation markers in my blood have started going up again instead of down so we may need to move on to more intense treatment. For the past few months I've been taking a steroid (prednisone) and an immunosuppressant (mycophenolate) to hopefully counteract my dumb immune system, which has made my flare ups less intense than they were in Dec-Feb pre treatment. But even as they've increased the immunosuppressant my skin has not been totally clear in over six months and every time I so much as step outside my apartment, walk around too much, or wear tight clothing I have massive flare ups. The rash itself is not painful but with friction around my feet and thighs it starts to burn and itch which is no fun at all. And unfortunately having this disease for this long could be bad news for the rest of my organs, which thankfully so far have shown up fine in tests.

So basically at my last rheumatology appointment I was put on the max dose of the mycophenolate with the idea that if this doesn't work we will have to move on to different treatment. There are two options if this happens: a similar immunosuppressant called methotrexate that would basically work like the mycophenolate but maybe magically would do better, or a strong iv infusion called rituximab. Now I have been through my share of weird medical shit but the one thing that still terrifies me is an iv. One of the worst experiences of my life was being hospitalized for a week stuck to an iv in 2012 and the whole time it felt like my arm was being broken. I've always been afraid of needles and in fact my first blood draw at the rheumatologist in Feb I fainted and threw up so now I'm famous with the phlebotomists. So just hearing iv I started to panic a little.

Then the doctor went on to describe the procedure being similar to chemotherapy/biotherapy and included the fun fact of a small risk of deadly anaphylactic shock. I ended up having a full panic attack and sitting on the floor of the office next to an open window while my lovely boyfriend fanned me and got me to drink some water. The doctor kept apologizing for freaking me out but I was just apologizing back like "I have an anxiety disorder it's fine not your fault".

So yeah I go back in on July 12th to see how the max dose and potential last hurrah of my og immunosuppressant works out and meanwhile I am firmly camped in my apartment trying desperately to avoid any flare triggers. I have a spreadsheet now where I rate the rash on each area of my body cause ya girl loves data. My boyfriend Sam has been absolutely wonderful taking care of me throughout this, running urine samples back and forth to the hospital when they kept scheduling my appointments a month apart exactly in line with my period. I am so glad this happened after we moved in together rather than before so I don't have to do this alone or move back in with my parents. My family has tried to understand what's going on but I think only recently started seeing the severity. They've at least stopped trying to guilt me into coming over. Being immunocompromised during a pandemic wasn't enough for them I guess, but minimizing flares so I don't have to do hours of ivs worked. Now we wait.

[mcatmemoranda]

I have a patient who was on vancomycin and ceftriaxone for preseptal cellulitis of his right eye ("preseptal" means the eyeball itself is not affected, but the tissue around the eye is; if the eyeball itself is infected, that's a huge emergency). He ended up having pruritus and a rash, which was thought to be due to toxins released from the group A strep that he is infected with (Toxic Shock Syndrome). So vancomycin and ceftriaxone were discontinued. He was started on high-dose penicillin and clindamycin. Specifically, he was started on Unasyn (amoxicillin-clavulanate 3 grams IV q6 hours and clindamycin 900 mg IV q8 hours). The penicillin covers for the group A strep and the clindamycin covers for the toxins released by lysis of the bacteria. If he has toxic shock syndrome, he'll need steroids and IVIG. This is not my pt, but this is what preseptal cellulitis looks like:

This is from UpToDate:

Group A Streptococcus (GAS; Streptococcus pyogenes) is a gram-positive coccus that causes a broad array of infections. GAS is most commonly associated with pharyngitis or skin and soft tissue (non-necrotizing) infection; these are not typically associated with invasive infection. Less commonly, GAS causes invasive disease; invasive GAS infection refers to infection in the setting of culture isolation of GAS from a normally sterile site (most commonly blood; less commonly pleural, pericardial, joint, or cerebrospinal fluid). (See 'Introduction' above.)

●In resource-rich settings, there are an estimated 3.5 cases of invasive GAS infection per 100,000 persons, with a case-fatality rate of 30 to 60 percent. The incidence of invasive GAS infection is increasing; the factors responsible are not fully understood. Invasive GAS infection may occur in patients of any age; the incidence is highest in adults >50 years of age, followed by young children (particularly those <1 year of age). Most patients are not immunosuppressed. Invasive GAS infection usually occurs sporadically; however, clusters and outbreaks of invasive GAS infection have occurred. (See 'Epidemiology' above.)

●Clinical syndromes of invasive GAS infection (in absence of toxic shock) include necrotizing soft tissue infection, pregnancy-associated infection, bacteremia, and less common manifestations. GAS bacteremia usually occurs in association with infection at a primary site; the most common source is skin and soft tissue infection. In some cases, GAS bacteremia occurs in the absence of a clear localizing source. (See 'Invasive GAS infection (in absence of toxic shock)' above.)

●Invasive streptococcal infection should be suspected in patients with signs of systemic illness (such as fever) in the setting of skin or soft tissue infection. It should also be suspected in pregnant and postpartum women in the setting of high fever or rapid onset of fever. The diagnosis of invasive GAS infection is established via positive culture for GAS from a normally sterile site (most commonly blood; less commonly pleural, pericardial, joint, or cerebrospinal fluid). (See 'Diagnosis' above.)

●Streptococcal toxic shock syndrome (TSS) is a complication of invasive GAS disease characterized by shock and multiorgan failure; it occurs as a result of capillary leak and tissue damage due to release of inflammatory cytokines induced by streptococcal toxins. In general, invasive GAS disease is complicated by TSS in approximately one-third of cases; necrotizing soft tissue infection is complicated by TSS in approximately half of cases. (See 'Toxic shock syndrome' above.)

●Streptococcal TSS may present with a range of clinical features; these include hypotension, tachycardia, and fever. Hypothermia may be present. Altered mental status occurs in about half of cases. An influenza-like syndrome characterized by fever, chills, myalgia, nausea, vomiting, and diarrhea occurs in about 20 percent of patients. A diffuse, scarlatina-like erythema occurs in about 10 percent of cases. In addition, symptoms of underlying invasive GAS infection may be present. (See 'Clinical features' above.)

●Streptococcal TSS should be suspected in patients presenting with shock in the absence of a clear etiology. The diagnosis is established based on the clinical criteria and culture findings. Clinical criteria for streptococcal TSS include (1) hypotension (systolic blood pressure ≤90 mmHg in adults or <5th percentile for age in children <16 years) and (2) multiorgan involvement, characterized by two or more of the following: renal impairment, coagulopathy, liver involvement, acute respiratory distress syndrome, erythematous macular rash (may desquamate), and/or soft tissue necrosis (eg, necrotizing fasciitis, myositis, or gangrene). (See 'Diagnostic criteria' above.)

●A probable diagnosis of TSS may be made for cases that meet the above clinical criteria (in the absence of another identified etiology for the illness) with isolation of GAS from a nonsterile site (eg, throat, vagina, skin lesion). A confirmed diagnosis of TSS may be made for cases that meet the above clinical criteria, with isolation of GAS from a normally sterile site (eg blood, cerebrospinal fluid, joint fluid, pleural fluid, pericardial fluid, peritoneal fluid, tissue biopsy, or surgical wound). (See 'Diagnostic criteria' above.)

[labec99]

An exercise in futility

Finally got to talk to a psychiatrist about my adhd situation. Except:

They can’t even prescribe me actual adhd meds because it’s through an app (because my insurance said hey, we care about your mental health, so you can do this for free if you use this app! but what use is free if it doesn’t actually do the thing you need it to do??)

So even though I said Hey I’m pretty fucking sure I have ADHD and here are all the symptoms I’ve had my entire life and how they’ve been exacerbated by the pandemic and can we please address this

He just kept trying to prescribe me anti-depressants 

Which in and of itself is not a bad thing, anti-depressants work wonders for those with depression

Except I know what my brain feels like when it’s depressed because I went on hormonal birth control many years ago and it royally fucked my brain up to the point where I could not be on them, even after trying to let them level out for 6 months. It was quite literally the only time in my life when I had unaliving myself thoughts, and I don’t feel like that now. I know my brain and the differences in it.

If anything I have mild situation depression because HELLO WE ARE STILL IN A FUCKING PANDEMIC THAT HALF THE WORLD WON’T TAKE SERIOUSLY AND THAT CONTINUES TO PREVENT MY INDUSTRY THAT I ENJOY WORKING IN FROM COMING BACK TO FULL FORCE SO I’M ALSO STRESSED ABOUT LATE STAGE CAPITALISM AND TRYING TO MAKE ENOUGH MONEY TO LIVE IN THIS STUPID OVERPRICED TOWN AND ALSO THROW IN SOME CLIMATE CHANGE DEPRESSION TOO

So medication that helps with clinical depression will not stop the pandemic on a global scale or any of those other issues

Yeah I probably have anxiety, but also half the reason I have anxiety is because I’m so frustrated with myself for not getting shit done when I have free time because *surprise* Executive Dysfunction is a bitch and also, ya know, a textbook symptom of ADHD

Also when I asked about contraindications on the SSRI’s (and he was like, oh shit she actually knows things, because I’ve had an autoimmune disease since I was 12 and have to be on top of my medical history and anything that might interact with my immunosuppressant) and he was like, there really aren’t many, I immediately started doubting him, because you can’t even drink fucking grapefruit juice if you’re taking SSRI’s, and also your skin can become more sensitive to sunlight (which, considering I have an autoimmune disease that entirely affects my skin is kinda a concern for me) so, yeah, it does actually have a lot of contraindications and side effects so if you can’t even talk to me honestly about those, how am I supposed to trust the rest of your medical advice?

What a waste of my time. 

He even went out of his way to talk about how adhd presents different in men and women and that’s why women tend to be less diagnosed, and then proceeded to tell me that my symptoms didn’t necessarily sound like ADHD because I got good grades in high school. As if needing to overload myself to have so much structure that I literally didn’t have the choice not to do things is a healthy coping mechanism or something.

Like, Fuck you dude. You literally said the problem out loud and then just streamrolled on continuing the problem yourself. wtf.

[hisoknen]

You were in and out of a hospital as a kid too? Do you mind if this anon asks why and if you’re all better now?💟💟💟💟💟

i have crohn’s disease! before the diagnosis i had a malrotation of the intestine which basically means my guts were knotted like spaghetti and i couldn’t poop to save my life kjasldkfj. lots of stays trying to figure out meds, sorting things out when meds made things worse, flare ups and regular surgeries to help out with restrictive scar tissue. it’s a chronic illness so it’ll never quite go away but i’ve been in remission for the most part since around 2017! i take a monthly immunosuppressive drug that helps my body not try to kill itself along with dilations and so far the mix has been doing well and i feel good most days!

we’re both hospital kids?! if you’re comfy sharing could i ask why you were in and how you’ve been doing since? 

[nicejewishgirl]

I take so many pictures of scenery and not many of myself bc I think I look so sickly in every picture and I really do because I really am lol

[trashcatsnark]

Ya know the whole, V's supposedly has very little time left and is dying quickly, but has like all this time to fuck around cause the game only remembers V is dying when the main plot hits other than the occasional relic malfunction.

My absolute bullshit justification for this with my V is that she was already on immunosuppressants pre-Johnny, because she has an autoimmune disease. Because it seems to me like the relic is written like a very aggressive neurological autoimmune disease. Like it's making the body turn on itself and rejecting all the things that make V, destroying the brain tissue. I think part of a line is that at a certain point V's body rejects V, it doesn't recgonize V and treats them like a cancer that needs to be fixed. Like antibodies over acting and attacking healthy tissue in an autoimmune disease.

So, obviously it's much more advanced and aggressive than a regular autoimmune disease, because it's advance tech and rewiring her brain to be Johnny's. So, it doesn't stop it, but I think it could theoretically slow down the process. Like how people were theorizing that the MS neural nanite treatments could help V, since it's V's neural tissue that is eroding. MS is an autoimmune disease and the way to treat it currently, in a world where those fancy nanites are far away, immunosuppressants. Which would still A) still be available i assume and B) even more beefed up even if they're not as impactful as the super treatments.

Now obviously, this isn't like solid science, I ain't no doctor and cyberpunk acts on it's own uhhhh logic. But idk, i think it could slow down this stuff.

Basically, my V's body has been attacking itself and trying to kill her long before Johnny was ever a thing in her life, so she's kinda use to this shit (on a lower scale).

[creepyscritches]

if I was seriously sick with something, my canary in the mine shaft is the increased activity from my immune system would ALSO be immobilizing my arm and hands further than usual.

i think folks mix up “autoimmune” with “immunodeficient”. Autoimmune disorders are frequently a form of an overactive immune system--to simplify the concept at least; it’s obviously a much more complex and varied disease family! Some conditions are simply the immune system shooting itself in the foot.

In my case, my immune system fights EVERYONE, ME INCLUDED..... These bastard little immune cells are always lazily punching me, but when a genuine immune response is needed, there’s a massive influx of these shitheads and they starting burning everything down for no reason like white people after a hockey game.

Autoimmune disorders are typically managed with immunosuppression therapy like chemotherapy, biologic agents, and corticosteroids. Well-managed autoimmune conditions usually equate to being immunodeficient. Our immune system couldn’t behave, so it doesn’t get to come outside to play at all. This means that when we get sick, we can’t naturally fight things off and are reliant on antibiotics or other medical intervention.

Didn’t mean to ramble so much, but pretty much don’t expose autoimmune people to your gunk in any setting bc either you’re throwing gasoline on our tire-fire immune system OR you’re doing the plot of osmosis jones on us and we don’t have a jones to fix shit

[pitiless-achilles-wept]

How to Endure: Cancer in the Time of Pandemic

[Originally posted March 28, 2020]

Hi all, Welcome to a very special birthday post from me in which I mostly think about what it's like to have cancer in the time of a global pandemic. As a way of topping my last year's celebration--where I was just about to start chemo--this year the world is sheltering in place under quarantine orders as an unprecedented public health disaster unfolds around us. (Sorry if my prediliction for dramatic narratives is in any way responsible for this fact...) I've been trying to work up the energy to post and let you know that I'm doing ok in this time of a global emergency...as ok as anyone I guess. I should say right off the bat that I am not, right now, immunocompromised, although I am at risk for it. We can all hope my system keeps bouncing back as it has done to keep me out of the most vulnerable group. (I do also have lung tumors, so a respiratory infection would automatically come with complications.)

Mostly, I spent a lot of the past two weeks wondering not if but how the pandemic was likely to affect my cancer treatment and I finally have enough information to confirm that, as of now, I'm still able to stay on the study and get chemo as planned this coming Thursday (April 2nd). I had been scheduled to get CT scans on Tuesday, March 31st to assess whether the treatment I started at the end of January has worked well enough for me to continue on the clinical trial. Although I get so many that it has perhaps come to seem routine, "scanxiety" is a very real phenomenon because these are how you learn whether things are going well (or well enough) or whether the disease has "progressed" and you have to regroup and try again with a new treatment plan. It had been since October that I had had a positive scan, with November showing a halting of improvement and December and January documenting the reversal of recovery. So obviously I was anxious and wanted them as soon as possible. Hearing reports of "non-essential" treatments being canceled, my Penn oncologist and I decided to try to move my scans up. After many phone calls and the efforts and good will of a number of doctors and hospital staff I was able to get them on the 23rd in Princeton (avoiding both the drive into Philly and the potential for exposure there). I'm glad we did because I learned yesterday that the treatment has been working fine; not great, but well enough that a) some tumors got somewhat smaller, b) no tumors got bigger, and c) no new metastatic sites were observed. Clinically, that's ruled as "stable disease" b/c in order for it to be a "partial response" you have to have your cancer go down by at least 30%. But reversing the trend of growth is still a win, and perhaps more time will see more results. And crucially, I do not have to investigate a new treatment option or try to change in the midst of what is soon to be the crest of the pandemic wave of cases. It's only relatively lucky, but I will take it! I have also seen reports in the cancer community about people having their chemo canceled as non-essential, which was shocking to me. I wrote last year about feeling like cancer should always be a "red ball" case that gets rocketed up the chain for testing, insurance approval, etc. and being shocked that it just wasn't. I understand that in some cases where a cancer patient is immunosuppressed, even attending a treatment at a hospital may pose greater risk than delaying it because the risk of infection is such a threat. But that is an extraordinary statement to make, amidst a daily barrage of extraordinary statements. Not all the stories were that clear-cut, though, so I was glad to hear from my doctor that as a stage 4 patient my scheduled treatments will not be bumped. I cannot have any visitors (and it's a pretty rough thing to do alone), but I can and will get through this. We all will. Because we all have in us more than we know. *** Shortly after my beloved grandma died (suddenly, from complications during surgery) my dad told me that one of the last things she said to him was that she would be ok because, "I'm a warrior." And she was. From a tiny place in the woods of east Texas, as a teenager she ran her family's store during the Great Depression and cared for a mess of brothers. When my daddy was eight years old, she and my grandfather picked up and moved away from a community where they knew everyone and had for generations to Dallas--an unfamiliar big city--because his younger brother had been born deaf and they wanted to send him to a special school. She founded and ran her own school, an income she supplemented with other jobs while my granddaddy was away walking pipeline for an oil company. When I knew her, late in her life, she had lost her sight but continued devouring books on tape and listening to the clues on "Jeopardy!". I was the first and only grandbaby and I was adored (not to say spoiled). The only times she actually saw me, before she was blind, I was just a few months old, chewing clean laundry in the basket in which someone had deposited me. As I grew up, she would feel my face, my hair, my ever-increasing height (and joke each time that "I'm going to have to saw your legs off!"). She would listen to my voice on Sunday phone calls; do crossword puzzles with me, as I read clues while lounging on her velour sofa; offer a "piece of Hershey" or a stick of spearmint gum from the same blue tin on the table in which she kept her cigarettes. She could still piece quilts by feel, even though she couldn't see the fabric, and advised me on the 1ft patchwork square I made for my doll's bed. She was weakened, exhausted, blind, and often in pain (which she tactfully never mentioned with me around). Except when she changed to a polyester pantsuit for visiting the doctor, she wore carpet slippers and housedress with a pack of Marlboros in the pocket that she lit from a gas burner, leaning on her walker by an ancient stove. No one knew quite how old she was when she died--our best guess is eighty-three--because she was also the kind of Southern lady who told no one her real age. She was a warrior in that, despite all that had happened in her life and all that was happening to her body, she kept on going. She endured.

When I search for inspiration to continue with treatments that make me feel worse than the disease, to fight so hard to save a body that's betraying me, to stay in an increasingly terrifying world that's betraying all of us, I think of her last words. I'm a warrior. I will endure. Believe it or not, you are also and you will too. In our struggles to continue with our lives in the face of monumental uncertainty and paralyzing anxiety, our greatest achievement is to keep on going. We fight (each of us different things) so that we may endure. It is not pleasant. It will reduce you to tears. You will exhaust all your emotional resources. But you will triumph. I have been fighting, existing in crisis mode, for 14 months and that is how I know that you can do it. You must grieve (and allow yourself time for it) for what you have lost, including a sense of safety or normalcy. But as you press on, you will find that inner strength or resiliency. I'm sorry that this is being demanded of you. It is not fair. But that will not change it. You may grieve, cry, fight, and struggle but, ultimately, you will accept that your way forward, your treatment, is to endure. I've reflected a lot on social media about how living with stage 4 cancer accidentally prepared me for the experience of the pandemic. I wrote a coda to an essay that will be published--likely this May--about the "Body as Data." Since the coda itself will probably change by then, the situating evolving as rapidly as it is, I thought I would share it here. Thank you for being with me and providing that community that has been the saving grace of treatment. Love, Bex *** As of writing this essay, it’s been 14 months since my diagnosis. I have tried three different treatments, two of which were clinical trials, one of which I am still enrolled in. It is approaching my thirty-sixth birthday [it's actually today - March 29th] and everyone is sheltering in place because of the coronavirus. I have lived more than a year now tolerating the same kind of existential uncertainty and fear of an alien invader in the body that the world as a whole is now experiencing. I have played my own doctor, watching my body for signs that a treatment is working, or that it is not, in much the same way. I have tried to anticipate what will happen if I become immunocompromised (as I currently am not, but am at risk for) and given up many of the pleasures that made my life better before (traveling, going out with friends) in the name of my health. I have offered my body up as data to research scientists with the goal of furthering not just my own treatment but the survival prospects of future patients. I did not know that throughout this year I was in training for a time when we would all of necessity be regarded as bodies with the potential to produce valuable data about the spread and effects of COVID-19. We are starved for numbers, for data on infections and recoveries and for statistical models that may relieve us of the uncertainty we feel about the future. I cannot provide that. But I can tell you to be cautious readers of data and statistics that speak with any pretense to authority right now, even though I crave them too. Cancer is invisible and so are viruses. This particular virus can inhabit the body but produce no symptom and live for days on surfaces. It may be in us. It may be in those we love. We are in the middle of the data. We are the data. Susan Sontag wrote in Illness as Metaphor that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3). A pandemic transcends borders but does not do away with the kingdom of the sick. As someone already resident, I can say to you: welcome. The hardest thing about being here is the grief for what we have lost, including a sense of normalcy. The best thing, though, is what we may find: community in a time of crisis.

[magistralucis]

hello! do you remember when the biggest reason to worry and contemplate was till waving his penis around? :S how are you holding up in the face of global pandemic and all that jazz? i haven't heard much news from the UK... are you alright? personally, I'm freaking out. trying to maintain composure and telling everyone to stop socializing in person and spreading the virus etc but internally i am like goodbye sanity. 😅

honestly i’m doubting the concerts will even happen at this point

Personally? I haven’t talked too much about it on here, but I’m absolutely super duper not okay 🤪😩😣 I have literally 0% concerns re: death, and I’ve always been a hermit, so it’s not that I’m affected too much by quarantine measures. (Not that the UK has appropriate quarantine measures - the absolute joke of a PM we’ve got won’t even consider banning mass gatherings.) Chest infections I’ve had in the past six months indicate that I may or may not be asthmatic, which is a slight blow against my chances - but I am also in my twenties, and not otherwise immunocompromised or immunosuppressed, which means my chances of survival are sky high anyway. When it comes to the disease itself, I’m stocked up, and I’m pretty prepared to ride the sickness out should I end up getting it. That’s not the problem.

But people? People are absolutely the problem. I am really not convinced I can ride out what public perception has become. I’ve actually become afraid to go out because everywhere I go I think people are looking at me like ~**~*ooohHHHOHHohHo check out that inscrutable oriental spreading the plague!!!11!!@!!*~~*~ and I’m just. Fucking over it to be honest. I’ve already had people clowning at me over this virus. I’ve always been a minority in the UK, and there was always bullshit, but never to this extent.

This is an incredibly bad time to be Asian. I honestly think I’m more likely to be beaten to death by racists than to even get the plague at this point. That’s what I’m afraid of, and it’s really eroding my mental health at the moment akhdhdhh

[wildestdreams946]

A lot of you may have noticed that I havent been active much recently and I can now tell you all why. A week ago after years of investigations I was diagnosed with Lupus and Rheumatoid arthritis which are autoimmune diseases (basically my immune system is attacking itself). This explains why I go through times of feeling so poorly to the point where I cant get out of bed or even worse end up in hospital. I have my good days and my bad days but most of the time my days are pretty bad and I struggle. Unfortunately I will never be cured but they've decided to put me on chemotherapy drugs (Methotrexate) which I will be starting very soon. I will be logging my journey through social media and i will keep you all updated. I hope you all understand. All my love, J xxx #autoimmune #disease #lupus #rheumatoidarthritis #ctd #immunosuppressants #chemotherapy #warrior #chronic https://www.instagram.com/p/B6rfR_IBKc6/?igshid=1crhkd19u2twy