terminally ill & funnier than you

I am now trying to buy a car so I can escape my abusive home and live longer! I need all the help I can get.

why did you change your pinned post?

there are a lot of people asking me for advice for their medical emergencies. I appreciate that you think so highly of me and I am not mad at anyone for being scared. but I am not a doctor, I am not an EMT, I am not a medical helpline, I am not trained to handle this much grief, I am a terminally ill person who tells jokes online.

hey I have a new and sudden heart thing/chest pain/fluttery feeling/heart weirdness going on. what should I do?

heart disease is the most common cause of death in the world. the only way to know if your life is in immediate danger is by being checked out using specialized hospital equipment. minutes can be the difference between life or death. go to the emergency room.

should I ask for your opinion on whether or not I should go to the emergency room?

no. just go to the emergency room. you will get a free bracelet

I have an urgent medical question! should I ask you about it?

no. I am not a doctor. see if there are any nurse hotlines or insurance advice hotlines near you that may be able to give you advice.

you are cool and funny and I am financially stable and will not hurt from sending you some cash, where can I send some hot dollars?

fuck yeah I love money as high fived to me by people who will not hurt as a result. here is my ko-fi

I also have a health amazon wishlist and a non-health amazon wishlist! these go to me and are addressed to john as in, john doe.

Read more …

I feel like such a piece of shit for not even having an exact fundraising goal. my brain feels completely broken. I am trying really hard to remember anything. I am so fucking sorry

the dysautonomia international 2023 videos are now out. it will probably be a while before I can post notes on them. check my recent posts for why.

recent times I have thought the most about religion and prayer and if there is any prayer that might help me:

• when I almost died throwing up blood in 2021 from some kind of food poisoning and was incoherent and screaming for mercy
• the past few weeks

so the mold must really be getting to me here

I could really use a crossover SUV right about now

thank you for every current and future “I promise” on that last post

mamoru:

my blog has been around for a while. a lot of you following me now have kids or are considering kids.

no matter what you do and what precautions you take, no matter how active your kid is or how many sports they play, no matter how much you think this post will never apply to you, there may come a time in your life where your child gets sick and does not fully recover. there may come a time when they develop a chronic illness, an incurable medical condition, or become disabled. at any age. nobody is too young for this to happen to them. an accident, an illness, an injury, any one of the many genetic conditions out there without proper testing, something you thought they would recover from. any number of things here.

and if that happens. I need you to do this for me. I need you to look at your kid. no matter how much you wish nothing bad ever happened I need you to very seriously sit them down. and I need you to tell them

“I will love you even if you never recover.”

and I need you to mean it.

promise me.

(via mamoru)

how many people even remember that I am still alive?

I was given an ultimatum of do thing that would inevitably make me very sick while I had a fever, or get kicked out. there was so much screaming

so I did thing that would inevitably make me very sick, in the middle of family announcing they are going to stop masking

and then I got sick enough to dissociate really hard.

everything felt unfamiliar. I looked at this blog like it was a stranger. barely associating with my own memories. I wrote all this? impressive. but if I wrote all this how am I still here? was it not enough? when is it going to be enough? am I doing something wrong? why is it so much easier for me to save a hundred lives than it is to even improve my own? how many thousands of people do I have to help before I get to be saved?

am I ever going to be able to live somewhere clean and quiet? when do I get to live breathing clean air?

what series of actions will get me out of here quickly and safely without making it all worse?

what is it going to take to both keep my medicine and stop getting screamed at all the time

my whole life is so stupid. what am I even doing? where did I go wrong?

mamoru:

ALT

ALT

ALT

thank you. yeah

mamoru:

mamoru:

ALT

easy infographic to get an idea of what symptoms are commonly associated with POTS, and here is where it comes from. this is not diagnostic but it is a helpful evaluation. this is also not a complete list of all symptoms that can be associated with POTS.

and a short explanation of each!

• Dizziness (upright position): like when standing up from laying down, or when being upright for too long as the blood drains from the head. POTS can also affect balance as a whole.
• Palpitations: problems with how the heart beats, such as going too fast (tachycardia) or feeling like it skipped a beat or beat too early.
• Chest pain: this includes discomfort that might not necessarily be described as pain. this can happen whether or not there are heart palpitations happening at the same time.
• Pre-syncope: also known as near-fainting. syncope is the medical word for fainting, pre-syncope means feeling like you are going to pass out, even if you never lose consciousness. most POTS patients do not fully faint. POTS is more a condition that involves feeling like fainting rather than being a fainting condition.
• Memory/concentration difficulties: yeah surprise this can be a dysautonomia thing. brain fog is in this category. it can be confusion, memory, struggling to focus, dissociative feelings, feeling goofy, all sorts of not thinking right or struggling with thinking.
• Dyspnea (at rest or during effort): means feeling out of breath, being short on breath, having trouble breathing, or feeling like you are struggling to breathe.
• Gastrointestinal problems: stuff like pain, constipation, diarrhea, having food get stuck, feeling full too quickly, bloating, having a lot of gas, choking, just generally not having digestion and/or going to the bathroom be easy. eating food and going to the bathroom is not supposed to hurt or be a huge process.
• Abnormal tiredness (persists after rest): self-explanatory. feeling way more tired than you should.
• Nausea: feeling like you might vomit, even if you never do.
• Muscle pain: with or without doing things that you expect to cause muscle pain. some people have skin pain too. POTS is associated with feeling too much pain in general.
• Headache: headache.
• Insomnia: struggling to sleep and not sleeping enough. the opposite of this involving sleeping too much is hypersomnia, which can also be a dysautonomia thing for the record.

congratulations to the next batch of people who read this and have their “oh.” moment.

“The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.” from dysautonomia international

postural orthostatic tachycardia syndrome (POTS) is ideally diagnosed with a test called a tilt table test (a literal tilting table that measures how gravity affects the body), but there are other types of autonomic testing like qsart, and other types of evaluations for orthostatic intolerance like the nasa lean test. the autonomic nervous system affects all parts of the body, which is why POTS, a type of autonomic nervous system dysfunction (dysautonomia) is associated with so many different symptoms.

people with POTS, even those bedbound from POTS, regularly have MANY medical tests come back ‘healthy’, like heart tests, scans, and blood tests. autonomic conditions like POTS require specialized autonomic testing, or else patients might never get diagnosed.

POTS is treatable. there are a lot of treatment options now.

playing the great ace attorney. these are some good attorneys.