#mals

[hamsign]

I was gonna put away my clothes today (the #pile has gotten out of hand) but the agonies got me and i had to have half my prescription meds, a hot bath and am laid up with my heating pad

This sucks man

[snufkinsong]

i’m thinking back to the time when i had dinner with my parents and a second cousin and her kids and it reminded me of something interesting about how people treat chronically ill people.

her young son (around 11) was refusing to eat his broccoli, and she told him, “if you don’t eat your veggies you’ll be like [sunday] with her stomach issues.” and she tried to get me to convince her son that he had to eat his veggies so he wouldn’t end up like me.

i just think it’s interesting that people easily jump to the idea that chronic illness is something that you cause instead of something that typically just *happens to you*

i think sometimes it doesn’t occur to others that it is literally just luck a good chunk of the time. yes, there are probably causes for many things that we don’t know about yet. but i ate my veggies. i’m a fiend for a good salad. i doubt my chronic pain is something my body is punishing me with. it just happened, and that’s that.

and i don’t think it’s fair to be turned into an example. i’m a relatively happy person, and i don’t think it would be the worst thing to turn out like me, even though i have extra baggage. i don’t know. food for thought i guess?

[snakegentleman]

Had my doctor just tell me my pain is probably most comparable to gangrene or severe frostbite because the condition I have is causing literal necrosis!

[cyborgstomachstuff]

MALS infographic made by yours truly

[midwestpaladin]

How TØP has intertwined through my life:

In July of 2015 I contracted mono. I quickly went from being a healthy active teen to developing many chronic illnesses. The scariest of them being issues with my liver. Just weeks before I got sick with mono I attended summer camp where I made this really great friend. He started sending me song recommendations to listen to since I couldn't do much while being sick. One particular one stuck out the most to me and I kept listening to it on repeat. Forest by Twenty One Pilots. I soon listened to every single TØP song I could find on YouTube. They helped me through the scariest times of my life. On the way to doctor appointments, during late night panic attacks, when I wish I wouldn't wake up. TØP was there. A few years later in 2018, I started dating that friend who introduced me to TØP. That same year Trench was released and I received a POTS diagnosis which answered so many questions. In 2021 I had surgery for a condition called MALS at Cleveland Clinic, TØP released Scaled and Icy, and I got engaged to my boyfriend who introduced me to TØP. Luckily 2024 was a pretty chill year when Clancy came out. My husband and I will be celebrating our third wedding anniversary in October of this year! But it currently feels like the summer of 2015 again. My liver blood work isn't looking good. My doctor is actively testing for answers. I haven't felt this physically bad in a very long time. So it feels a little funny that Breach is dropping this year and it is the end of the story.

In 2015 TØP started a very intense story and I lived one.

[spoonfulofjesus]

Something very funny about being disabled is the regular holiday/tradition of going to read one of your conditions' Mayo Clinic/other medical website page and finding out that yet another thing you thought was either normal or a separate issue was A Symptom all along.

[risingscorchingsuns]

hey guys! this isn’t kny related, but I need advice, and I have a wider audience on this blog compared to my main.

I have a doctor’s appointment tomorrow, for a specialist I’ve been waiting six months to see regarding my chronic illness. I’m really worried about it- to even get this appointment, we had to threaten to claim medical negligence because nobody would take me seriously enough to look at my case file. I’ve had doctors cancel appointments on me week-of because they didn’t mean to make them. I need this appointment to go well. I need to start taking steps towards the surgery to fix MALS, but i need doctors to take me seriously enough not to dismiss it as menstruation or a normal food intolerance. Im afraid they’ll look me over, then send me home with an ibuprofen and a $700 bill. Its happened before.

I’m bringing my cis male friend to pretend to be a relative of mine, and he’s going to tell the doctors he’s been very worried about me and made me come in. Does anyone have any other advice on how to get doctors to listen to you? Any advice is appreciated- i need this appointment to go well.

I know I may be overthinking this, but I’ve had bad experiences in the past, and I can’t spend another year begging professionals who are supposed to help me to even consider my pain. I just want to be prepared to self-advocate.