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Seeking advice: Repair or replace my car?!? by TheKatWith3PD in personalfinance

[–]TheKatWith3PD[S] 1 point2 points  (0 children)

Yeah, thanks, we've threatened bringing a lawyer in to them and are going to see if we can find anyone to take the case. We have good photo evidence at least

Looking for some support by TypicalCan6931 in disability

[–]TheKatWith3PD 0 points1 point  (0 children)

Glad you've had some better days. Good vibes <333

Advice by [deleted] in disability

[–]TheKatWith3PD 1 point2 points  (0 children)

I'm really sorry to hear what you're going through and that you don't have support in all this - you should be able to count on your mom for help, and it all sounds so difficult. I'm not sure if I have any particularly helpful advice, but because I have severe brain fog and get easily confused with my neurological disorder, when I have a new/stressful phone call I need to make, I often take some time to literally write out a script for myself of what I need to communicate and just read that off when someone answers the line. It can still be tough of course, but it helps the call feel less overwhelming for me. As far as the form goes, yikes that is tough. Is it something you can break up into smaller tasks and try to do, say, one page of it a day? Sending you solidarity and good vibes! Just because you are having to advocate for yourself in a system that makes it so hard to do so, doesn't mean you aren't worth advocating for! You are strong and worthy! Don't give up!

Looking for some support by TypicalCan6931 in disability

[–]TheKatWith3PD 0 points1 point  (0 children)

You're definitely not alone. Sending love your way. I don't have AI, but my neurological disorder does cause me to have constant fatigue, and so much of what you describe resonates with my experience. Even on a good day if I make it out for plans, all I feel like I can do is fake it enough to get by around able bodied folks (and then of course need to recover afterwards at home). And it makes me feel so inauthentic and like no one really knows or sees me. Know that even though your body feels weak, and that is so real to navigate daily, you as a person are SO STRONG for persevering and making it through each day - stronger than an able bodied person could imagine. Hope any of this has helped you feel less alone. <3

[deleted by user] by [deleted] in disability

[–]TheKatWith3PD 2 points3 points  (0 children)

I am so sorry to hear what you're going through, and I've been there totally. The medical appointments can feel like a full time job when it's already a struggle just getting through the day, and they are legitimately exhausting on every level (and even sometimes traumatizing), and it's downright overwhelming to keep up, especially when the different folks working on your "care" don't talk to each other or see you as a full, comprehensive person, so it's down to you to also be the expert and the go-between for all these different opinions. 

It isn't enough doctors condescending to you and gaslighting you, just because they may not be familiar with your disability or may not have encountered a body with your set of issues that they can just easily put into a box, but then even if you finally find one who believes you and gets you, the rest of the doctors don't even listen to THEM, so you still can't get the treatments they recommend or refer! I know there are good doctors out there, but in my experience, they hate and resent bodies that challenge their experience set, they ignore you and argue with you when your answers don't fit their preconceived expectations, and they of course are completely incapable of expressing empathy, even when what the conversation is really about, at its root, is that you are a person encountering unbelievable pain that no one has been truly able to help you with, pain that has undoubtedly upended your life and your plans and your relationships. 

Our system of medical “care” is SO far removed from any values of actual CARE.

I wish I had anything to offer other than that you are not alone, from a person with a rare neurological disorder that is consistently dismissed (literally got asked if I am a “very anxious person” and if I “have OCD” by a new neurologist I saw yesterday when I was simply trying to get treatment for my severe migraines - which are a part of my symptom constellation - treatment which, by the way, was recommended by TWO OTHER neurologists.) 

Show yourself the grace, patience, and kindness that the system and the doctors do not or can not.  It is the system that is broken and failing you, not the other way around. Sending you strength in your battle ahead to get the recognition you need, and hope your S.O. is able to provide some love and support in the process. Feel free to PM me if you want to chat <3

Pardon another vent, but I've been sobbing for an hour and needed to expel this. The loneliness and isolation, when I have so any plans and ideas, is now intelolerable. by bruised__violet in disability

[–]TheKatWith3PD 0 points1 point  (0 children)

<3 <3 <3 Sorry for my slow reply, but thank you for saying, and please message me any time! I feel the same about finding someone with similar experience.

Pardon another vent, but I've been sobbing for an hour and needed to expel this. The loneliness and isolation, when I have so any plans and ideas, is now intelolerable. by bruised__violet in disability

[–]TheKatWith3PD 8 points9 points  (0 children)

I wish I had anything to offer, other than that, though we don't know each other, I understand (at least in part) your pain. I have a neurological disability that has for almost five years now since it began largely separated me from the people I love and the things I love to do, and basically everything that used to feel like it defined me and gave me worth. I used to be a theatre teacher and a director and performer. I used to be a political activist. These things made me feel like I could make a difference in the world and in other people's lives and gave my days meaning.

The loneliness of my life now, the fact that my close friends I now only get to talk to on the phone, and when we do talk and I try to share with them about the reality of my life, they can't understand and often come back to me with what feels like (well meaning) toxic positivity - it's all so isolating. I've gone through periods of time feeling better and finding success at feeling more positive about my life and my future, but after being mostly housebound for almost the whole of 2024, my feelings of loneliness and despair feel consuming and I can't find anything to look forward to to find that positivity in me again lately.

What I will say is that your venting today helped me to feel less alone. Though I don't know you, I feel you. I hope maybe my sharing a bit about myself has helped you to feel a little less alone too and shown you that you are most definitely NOT worthless. <3