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#my life as a cancer patient
kirby-the-gorb · 1 year
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I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!
cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.
multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.
fludrocortisone. 2 pills a day. for POTS.
atenolol. 1 per day. also for POTS.
montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.
loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.
aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.
whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.
dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)
low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).
that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )
3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.
this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!
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astriiformes · 9 months
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Sending love. Hope you’re okay.
Oh! If this is because of the MRI I mentioned, fear not -- it was a totally precautionary procedure, and I already got the results and they're in the clear. It's actually another box checked on my journey to top surgery next month (!!). I'm genetically high-cancer risk and have been talking to my surgeons about an approach that will be both gender-affirming and minimize my risk of problems later on.
That said, I will take this chance to say to my followers!! If you, too, are someone with a scary family history of breast cancer and are contemplating top surgery, there are options open to you! I knew it was a real risk for me and was able to get genetic testing covered by my insurance before talking to my surgeons, and my top surgeon then talked with me about the various options I had at my initial consult. I'm specifically opting for a procedure that's a little more intense than a standard gender-affirming surgery but not quite a full double masectomy, and it will be done jointly by two surgeons, one who specializes in gender-affirming procedures and one who usually works with cancer patients and/or patients looking to have preventative surgeries.
Anyways not to throw my medical history at the internet, I just feel really strongly about this, in part because I've had multiple people I've talked to about my own top surgery process tell me they had similar worries and didn't know there were options for people looking to combine gender affirmation with preventative care. I want to watch out for my fellow trans and gender non-conforming folks, especially considering how much the healthcare system can suck for us, and there really are health professionals who take this sort of thing into account with their patients!
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maraeffect · 10 months
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i need more casual friends bc i'm getting extremely tired of being the therapist friend 🙃🙃🙃
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tact-and-impulse · 1 year
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4000th post
Continuing the milestone tradition of recommendations!
The Mitarais’ House is on Fire: Thirteen years after her mother takes the blame for their house burning down, Anzu disguises herself as a housekeeper and infiltrates the home of her father’s new wife, a family friend who she believes is responsible for the arson. In her own words, “We had a great deal taken by this woman. I’m taking it back. I’m taking everything back.” But she quickly realizes that as she delves deeper, there are more secrets waiting. And as closely as she watches her target, she’s closely watched in return... This story is absolutely crackling. I love the revenge drama, the smart twists, and the depiction of public vs private life. And I froth at the mouth for a particular dynamic. Now licensed in English and NETFLIX SHOW COMING SOON
Kieli: I read the manga years ago and the light novels have been on my backlog for a while, but I’m glad I finally got around to it. The title is the name of the heroine, a lonely and blasphemous teenager who can see ghosts. Following an encounter with an Undying, an immortalized young man who fought in a bloody war 80 years prior, and his antique radio possessed by one of his victims, they travel the world. For better or worse, considering Undying are being hunted down for their regenerative cores and there are rumors of new experiments. The ending is bittersweet and I choose to read it as a hopeful one; the whole series is certainly memorable and very underrated.
The Jinx’s Lover: I read this one a long time ago and considered recommending it in its early days but I caught up on it again and it’s so good. As a young girl, clairvoyant Seulbi runs from the abusive hold of a wealthy conglomerate for a day and into the arms of kind but poor Sugwang, who soon finds himself shockingly lucky. When the company retrieves her, that luck turns into misfortune for 7 years...until he meets her again in her second escape attempt. It’s pretty funny, and I think it’s good for Kdrama fans!
The Alchemist Who Survived Now Dreams of a Quiet City Life: A light novel series, now completely translated in English! Mariela is the titular alchemist who placed herself in suspended animation during a disaster, only to awaken...200 years later. Unlike in the past, alchemists are extremely rare and in high demand due to the dangers of the nearby Labyrinth, a monster-infested structure that’s proving to be the worst in history. The male lead is a slave she rescues, a former adventurer humbled by the loss of his supernatural eye and is now devoted to her. He saves the labels from wine bottles they drink together, that’s real love!!!
My Blissful Marriage: A light novel as well as a manga about an arranged marriage in a low fantasy Meiji era setting. Miyo is the daughter of a clan with supernatural powers, but when discovered to be utterly mundane, she’s treated no better than a slave by her family. Cue her engagement to an ill-tempered officer rumored to drive away any woman in his presence. Of course, as the days unfold and they learn more about each other, they grow closer. Now licensed in English!
Kimi no Koe: A fairly new Taisho era manga. A young entrepreneur with a telepathic ability uses his skills to work his way up society, including a marriage to an affluent family’s daughter...only to find out that he can’t discern her thoughts at all. And she’s mute. It’s primarily from the guy’s perspective, and he’s kind of a bastard, but a loveable one.
Tsuka no Ma no Ichika: A college student in remission from an unnamed disease reunites with her favorite professor, who’s now terminally ill. A love story, in spite of their impending mortality. It’s nothing but pain. I do wish they would’ve progressed a little further, but it’s a poignant and earnest work about making the most of time you have left.
Sesame Salt and Pudding: Trying to get out of being summoned home, a drunken 22-year-old machinery operator marries one of the older customers in her favorite bar. I mean...it’s a dumb decision, but the heroine is the charming kind of dumb, so she’s actually not as annoying as a lot of characters I’ve seen. The male lead is mellow and sardonic and highkey a dirty old man, but at least, that part of him is honest! They’re cute together, the translation is excellent, and I got hooked.
Marriage of Convenience: This is how you pull off a reincarnation manhwa. A heroine who doesn’t immediately flip personalities and has realistic character development, while still retaining her core traits. A male lead who recognizes his own inadequacies, while still being a badass and an utter simp. The marriage in question starts off with a power imbalance, and the progression to a union of equals is just delicious. The side characters are also very loveable, with funny expressions in the background, and overall, it’s a great binge read.
I’m a Terminal Cancer Patient But I’m Fine: In my line of work, I think it’s good to get perspective. This is a humorous yet honest memoir, written by a mangaka who was diagnosed with stage IV colon cancer. The explanations are thorough and accurate, interjected with advice and of course, to listen to the medical professionals. The author is also a survivor of childhood physical abuse, so I really admire her resilience and I’m glad she has a good support system, especially from her husband. Although...can some of the hot doctors make it over here...asking for a friend...
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vergess · 1 year
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I think the fuckers who named 'evidence based medicine' were on some next level branding because it is now fucking impossible to criticize the myriad, monstrous failings of that framework without people saying you hate science.
Shoulda called it 'ego based medicine' cause that's what it FUCKING. IS.
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godblooded · 10 months
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lmfao our logical procedure went from the hospital to the er so guess who’s back at the er we waited until 2 am at!!!!
#ooc. mikkelsen vc: this week on kat valentine's hannibal.#[im going to fucking mcfucking lose it. im going to fucking mcfucking lose it. they closed the fucking or because they had a fucking#emergency! just decided to close it!!! just fucking decided to close it! and a nurse literally told my aunt ‘well if you don’t go there idk#we can’t do anything for you’ but here’s my aunt just. taking this shit on the chin. when she SHOULD be#fucking destroying this idiot. how negligent is it to go ‘we can’t do anything for you’???? she LITERALLY has to have like everything sucked#out of her body. she literally is carrying like 10 lbs of fluid. she’s not having a fucking boobjob she has cancer.#does anyone remember she has fucking cancer??? does anyone care about adding extraordinary amounts of stress to a CANCER patient????#I can’t fucking stand the medical profession. I can’t stand it. my mother was a nurse mark was a paramedic. I grew up IN a hospital#basically. I was CONSTANTLY at work with my mom as a kid. I know what the fuck your useless ass does and doesn’t do and I know when you’re#being FUCKING shitty. ‘we can’t do anything for you if you don’t go 2 hours from home or to the worst er possible’ what a joke. I’m going to#call this fucking hospital when I get home. I’m so angry and I’m so sick of everyone literally smacking my aunt around like a tennis ball.#she’s a fucking person with a life threatening disease. just because she accepts WAY too much shit doesn’t mean she SHOULD.]#negative /#medical /#cancer /#[sure wonder what it’s like to stop crying. sure never have any clue what that’s like.]
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sweetdreamspootypie · 11 months
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Plagueblogging / covid nursing 2023
#Unexpected development in covid nursing this season#Generally the intensity of covid itself seems to be less#Compared to this time last year#I guess different variant plus widespread vaccination in the older demographic especially#So now rather than high octane respiratory nursing#It's worked out now that we've got room and there's a rolling forever outbreak#That now we are getting send all the cancer oncology renal haematology patients that test positive#So now instead of general medical nursing#It's leaning much heavier towards oncology nursing#Which is. Idk there's a shift#Usually with medical it's a really obvious decline as people go towards end of life and we can make it relatively graceful#But man brain mets are another beast#There's a patient I never met but was just there for the edges of#And I think it will be a while before they don't linger in my mind#I'm so glad the family were onto it and we're accepting and understood her journey#And she was able to pass peacefully with them there#But man I'm glad I wasn't the one who had to make those calls#I was guiding the new grad with advice but they ultimately made different choices than I would#Luckily the patient and family's wishes were able to be followed#But imagining the what ifs of me being in that position had me bursting into tears again#Good practice#I'd have to know to find my voice and ask the question - do you want me to call a medical emergency or do you want some quiet?#That's not a question we usually have to ask because it's not usually so quick so the goals of care can be updated#Cancer cw
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sawruhh · 2 years
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I’m taking the first concrete steps towards my thesis today and I’m trying to read but I’m CRYING BECAUSE I CANNOT BELIEVE I’M HERE
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my hair is so fucking nasty im gonna need to buzz my hair again just so that my body is like even livable when i cant always shower every other day
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Marie Curie Campaigns
Nobody should spend their final days worrying about money.
But 90,000 people die in poverty every year in the UK. That’s 10 an hour.
Squeezed by the cost of living crisis, and by the extra costs that mount up once you’re diagnosed with a terminal illness, thousands of dying people are struggling to make ends meet with next to no help.
This has to change.
We’re calling for the following government support:
Give all dying people their State Pension, no matter their age.
Protect dying people from soaring energy bills.
Support dying parents with childcare costs.
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unimportantweirdo · 9 months
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thank the gods for my dad who is the one sane person in my family who sat down with me, went through all the courses i could do, supervised me when i signed up for them, told me exactly what to do with my cv and was calm and measured and the conversation didn't feel like a minefield
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maraeffect · 2 years
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getting cancer in your twenties is such a sick fucking joke man.
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scientia-rex · 1 month
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One of my patients used to be a Big Deal Specialist in the city and you can just TELL he’s SEETHING that no one out here is even qualified to understand what he did, much less how important he was. He’s also terrified of death. It’s both annoying and really sad. Like, sir, I hate to break it to you, but no amount of knowledge will protect you from the ravages of time. It’s a special kind of hell to know the stages of various fatal diseases intimately. What is it going to feel like when it’s my turn? How do doctors want to die? Suddenly, quietly. Slip away painlessly in my sleep. But how likely is that? Not very. More likely I’ll get cardiovascular disease or cancer, the greatest killers of our time.
He was so afraid of cancer he had an organ that wasn’t cancerous removed just in case. He talks down to me as if I’m his student, and who knows? Maybe I was. He was in the same city as me, and they were forever dragging Big Name Doctors in to teach us things. Maybe I learned how to elicit Achilles tendon reflexes from him.
But mostly I find myself a little scornful. Who lives without the shadow of death? Who doesn’t think about death all the time? When you die, life is a round thing, finished and whole. What will your life look like when God holds it in the palm of his hand?
Also don’t fucking call me by my first name unless I’ve specifically said you can. I don’t GIVE that permission to patients, except for my mentally ill trans and queer patients. If I wanted to be disrespected by an older man I would have married young.
You do not have time. This important doctor who based his whole life around his importance lived as rich and full a life as anyone. And now he’s clinging to it, leaving fingernail marks on the walls on his way out. No one has time. There will be a moment when you’re dying when you think, I would give anything I have to be back in that moment. Any ordinary moment. Taking the dogs out to go potty. Browsing at the grocery store. When you’re being crucified on a hospital bed, dying and aware of it through the morphine, you would give anything you ever possessed to go back and have one more agony-free afternoon. Sit on a curb or a stoop. Walk through a park. Hug your spouse. These tiny fragmentary moments that we are constantly sliding through, tobogganing past at high speeds, these are what will be our life when our life is over.
I am accountable to that self. To the dying me. What did I do with this gift and curse? I don’t believe in God, but I know that I will die, and I have watched enough dying people by now to know the kinds of things I’ll think about. I want to make that me proud of what I’ve done and how I’ve spent my life. She will be a harder judge than God, and I want her to look at this one little life and think, yes. I did what I meant to.
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rebirthgarments · 16 days
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TW: Chemical w-rfare, Ab-rtion
Urgent Ask to evacuate Nara, a 🍉 disabled woman with MS who also has pancreatic cancer due to chemical w-rfare.
Support by financially contributing to her @FedUp4Palestine vetted funhnd-raizer (that I personally vetted): givebutter.com/NaraMedicalAid
+ resharing/ reposting this post!
I, Sky Cubacub- a Fed up 4 Palestine team member, have been in direct contact with Nara to get to know her and her story more over the past few days. We have become fast friends due to so many overlapping symptoms of our disabilities. Nara’s story caught my eye because I have post-viral ME/CFS which many times is a precursor to MS. I really want my disability community to show up for her to get this campaign funded that is so close to my heart so that she can continue medical treatment.
We have chatted extensively! During our chats, I found out from Nara that she had not previously had health issues until she was exposed in the white phosphorus attack in 2008. The long lasting damage and effects of phosphorus continue to compound and become more and more disabling to this day, even after 16 years.
Here is her story in her own words (edited for clarity):
“Hi I'm Nara,
I'm a cancer and multiple sclerosis patient. I need treatment, examinations, and follow-up on a regular basis, but the hospitals in which I used to follow up were bombed and the other one was turned into military barracks. All I need now is to leave Gaza for treatment, preserve my life, and live with my family in peace.
We're a family of 4, including my 12 and 7 year old children.
I had been diagnosed with a tumor in the pancreas as a result of inhaling phosphorus in a previous war. A couple years after being exposed to phosphorus, I became pregnant, and the fetus was pressing on the tumor, which drew the doctor’s attention to the cancer. My fetus was emergency aborted, and the spleen, 80% of the pancreas, and part of the small intestine were removed. I complained every now and then of a lot of pain as a result of the removal of part of the pancreas. I was having follow up care in the Turkish Friendship Hospital for hematology and tumors. But since the beginning of October, I have not been able to follow up because the hospital has turned into a military barracks.
The remaining part is talking about multiple sclerosis:
In 2018, I was diagnosed with multiple sclerosis. I had many complications, such as inflammation of the seventh nerve in the eye, the inability to walk with balance, movement with difficulty, and many symptoms. I was then required to take 12 injections every month and many medications and vitamins. I was following up at the Nasser Medical Complex in Khan Yunis, but unfortunately the hospital was out of service due to the war. So for a long time I have not received any injections. MS is truly difficult and it controls my life completely, and the attacks occur in many and varied ways.”
A note about her breathing apparatus:
Because people in displacement have to wait in long queues and pay to use the bathroom, Nara had started to restrict her water intake because of a UTI she never has been able to heal from. This has created a problem with raised levels of potassium, so doctors have placed her on oxygen for fear of the potassium affecting her heart.
Goals
she needs at least $15,000 to evacuate
2 adults at $5,000 each
2 children at $2,500 each
this price is subject to increase due to the cost of registration for evacuation continuing to go up
The other money will go to the cost of treatment and living costs.
Nara chooses to stay anonymous because she has had to mask her disabilities so much that only her family knows about her MS and Cancer, so we have not linked her instagram, but we are in direct contact with her and can verify that she is who she says she is! Because of this, she cannot promote her own fundraiser, so it is our job to collectively do it for her!
[Image Description: a digital illustration by @k8deciccio of Nara, a Pal-eh-stienian woman wearing a black hijab/outfit with purple highlights. She has a breathing apparatus that is bulbous that goes in her nose. Text Reads: Help Narawith Cancer and MS Treatment, She Must Evacuate with her family of 4. $30k goal givebutter.com/NaraMedicalAid . There is a QR code in the bottom right corner that goes to her support link. The @FedUp4Palestine logo is in the top left corner.]
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lookingforcactus · 2 months
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A big cost and concern for many seniors in the U.S. is the price of prescription drugs and other healthcare expenses—and this year, thanks to The Inflation Reduction Act, their costs may go down dramatically, especially for patients fighting cancer or heart disease.
I learned about the new benefits because my ‘Medicare birthday’ is coming up in a couple months when I turn 65. I was shocked that there were so many positive changes being made, which I never heard about on the news.
Thousands of Americans on Medicare have been paying more than $14,000 a year for blood cancer drugs, more than $10,000 a year for ovarian cancer drugs, and more than $9,000 a year for breast cancer drugs, for instance.
That all changed beginning in 2023, after the Biden administration capped out-of-pocket prescriptions at $3,500—no matter what drugs were needed. And this year, in 2024, the cap for all Medicare out-of-pocket prescriptions went down to a maximum of $2,000.
“The American people won, and Big Pharma lost,” said President Biden in September 2022, after the legislation passed. “It’s going to be a godsend to many families.”
Another crucial medical necessity, the shingles vaccine, which many seniors skip because of the cost, is now free. Shingles is a painful rash with blisters, that can be followed by chronic pain, and other complications, for which there is no cure
In 2022, more than 2 million seniors paid between $100 and $200 for that vaccine, but starting last year, Medicare prescription drug plans dropped the cost for shots down to zero.
Another victory for consumers over Big Pharma affects anyone of any age who struggles with diabetes. The cost of life-saving insulin was capped at $35 a month [for people on Medicare].
Medicare is also lowering the costs of the premium for Part B—which covers outpatient visits to your doctors. 15 million Americans will save an average of $800 per year on health insurance costs, according to the US Department of Health and Human Services.
Last year, for the first time in history, Medicare began using the leverage power of its large patient pool to negotiate fair prices for drugs. Medicare is no longer accepting whatever drug prices that pharmaceutical companies demand.
Negotiations began on ten of the most widely used and expensive drugs.
Among the ten drugs selected for Medicare drug price negotiation were Eliquis, used by 3.7 million Americans and Jardiance and Xarelto, each used by over a million people. The ten drugs account for the highest total spending in Medicare Part D prescription plans...
How are all these cost-savings being paid for?
The government is able to pay for these benefits by making sure the biggest corporations in America are paying their fair share of federal taxes.
In 2020, for instance, dozens of American companies on the Fortune 500 list who made $40 billion in profit paid zero in federal taxes.
Starting in 2023, U.S. corporations are required to pay a minimum corporate tax of 15 percent. The Inflation Reduction Act created the CAMT, which imposed the 15% minimum tax on the adjusted financial statement income of any corporation with average income that exceeds $1 billion.
For years, Americans have decried the rising costs of health care—but in the last three years, there are plenty of positive developments.
-via Good News Network, February 25, 2024
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crucialplayer · 7 months
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Thoughts on Mars placements 
!! everything is based purely on my experiences with signs, written with no other purpose than to share my observations and be unserious.
Aries mars. Practical jokes lovers, gentle touch haters. Hit u while laughing. Love the banter, sometimes a lil too much. Go for it (whatever it is) fiercely and without a single backthought. Explosive in conflict, but in a sense of crying screaming throwing up banging against the wall. 
Taurus mars. Life could be on Mars but they still be going on and on about that one thing. Sudden outbursts of anger. It might seem out of the blue but they’ve probably been brooding some hurt for a long time. They just hoped it’d go away… naturally. Also surprisingly horny. 
Gemini mars. Mind fuckers. That one guy defending polygamy «as a concept» rather too enthusiastically. Can talk their way out of hell with one leg already in the hottest boiling cauldron. I suppose it’s a placement most people will find charming at some point (says a lot about society…). 
Cancer mars. Rumors are true, the sky is blue, and they are manipulative. Watching anybody else display vulnerability is the same as watching a children’s play to them. Ur rawest and most disturbing moment? To a cancer mars its a chill Tuesday morning. Humanization of a silent treatment. 
Leo mars. You’d gather that its serious by the sheer scale of their reaction but I promise its not. 9 times out of 10 will cause a huge scene and won't be able to remember it 2 days after. Very defensive. Won't put themselves out there if they’re not guaranteed a 10-minute standing ovation. 
Virgo mars. They believe that they make sense but usually they don't. They’re calculating but it’s like they do it backwards resulting in some of the most unhinged decisions made. Want to be praised for… um… existing as they are. Kind of a menace in conflict. 
Libra mars. If u think it's hard for you to wait for them to make up their mind imagine how they feel. It’s similar to watching a plant move without a time-lapse. Cry when they’re angry. Go with the flow not because they’re chill but more cause it's easier for them. 
Scorpio mars. They ARE vengeance and I'm scared. Slash 3 tires after one fight mars. Not the person you’d try to make jokingly jealous. For further information read the lyrics to… really any Taylor Swift song. 
Sagittarius mars. Don't think before they do and think after they’ve done smth only if u make them. The kind of people that will try everything once just to know how it feels (and then present that to everyone as if they’ve found god by bungee jumping one time). Very easy to dare. Also are always checking someone out. 
Capricorn mars. Blood is cold, the heart is beating twice per minute. ISN’T IT lonely on top of the world fellas??? If u get them to like u your love language better not be words of affirmation. Instead of arguing chances are high they disappear for a while or just go into a rock regime. 
Aquarius mars. Are only attracted to intellectuals so naturally in a room full of sweet gentle people will go for the most narcissistic motherfucker out there. They’re sorta very patient but I feel maybe it's just them dissociating… Ponder a lot before making a move. 
Pisces mars. I'm afraid no one knows whats going on there. It's like they’re never actually present. Therefore often times can have a delayed reaction to smth, which people might read as passive aggression. Very sentimental, will write u a song or a poem on a second date. Also low LOW energy. 
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