@mineralizedwritings
Active 1 day, 13 hours ago- Rank: Chosen One
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I might be able to make that! I haven’t been able to go to most of them so I’m not sure I’m on the list for a email link or not
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One time back when I was a kid and lived further west a giant slug slimed on me and we couldn’t get it off, even had to use that like industrial soap that has sand beads in it. I was crying so hard 😭
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oof lol, I’ll pray for you! I’ve had scopes before but under anesthesia, I can’t imagine doing it awake!
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I definitely understand from my perspective as a loved one of the sick person.
I’m glad you’re able to recognize it’s different, bc it really is but it’s still so much more understanding than most people have.
There is nothing more frustrating than thinking there is improvement, and backtracking for what seems like a ridiculous or small reason. Small things in the diet, or whatever. It’s like the worst form of personal analysis because you have to ask yourself what you did wrong, when millions of other people don’t have to feel low self esteem over those things. It’s not fair.
Yes, this exactly. I’ve changed diet, become allergic to my new safe foods, tried new things… so many times. I feel shame every time I mess up and doctors can only guide me so much.
🙋♀️ Genetic hormone problems here. My mom has become so much more confident and loves to wear quirky clothing, which has also been a huge confidence boost for me as her daughter. I have my own diet problems so I’ve recognized the change in both of us.
Aw man that sucks. That’s so great she’s gotten more confident though! Honestly getting more into clothes helped my confidence a lot too. Like I’m not always expressing my personality but my clothes show it and it feels better that way.
I get that. It’s also hard to connect with people unless you’re face to face, and very easy to misunderstand. Even past that, my experiences are different.
Yeah I dunno. Maybe it would be different face to face but only like a third of my health issues are diagnosed and people only really understand a diagnosis rather than ‘I’m sick all the time’. I usually tell people the diagnosis that sounds the scariest so maybe they’ll get half of it lol.
And totally, your perspective isn’t something I would really understand that well either. My mom and I feel different kinds of pain about my illness, and I understood part of what she was feeling when my sister started having trouble walking this year. It hurts to see people you love in pain.
A lot of people still have that discrimination levied against them, though.
It’s hard to look at somebody and see how hard they’ve tried. We tend to look up to people who have great achievements but I think they people who have overcome the most don’t usually look that flashy.
I wouldn’t mind that! I’m fine with sharing email if that’s your thing, or wherever you’re more comfortable on here.
Ok! I actually tagged you in an activity comment earlier asking you about that so it’s funny we’re having this conversation now lol. I like doing it over there bc it’s easier to delete the message. Email or discord whichever you are more comfortable with is fine!
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My mum has complained about how doctors used to constantly tell her she was crazy and imagining things, which also led to self-image issues because they discriminated against her weight gain. I’m sorry you’re going through similar problems. Please update when you want, I want to listen too. <3<3
It’s really good to know somebody gets at least some of what I’m going through <3
It’s honestly sickening. The more time I spend on the internet the more other sick people I meet and I have heard so many accounts of doctor dismissing things and it leading to worse health (or honestly just being rude in general). I’ve experienced some of that myself and its the worst. I wish doctor wasn’t such a prestigious job because I think some people who get into it don’t care much about people. People can gain weight for all kinds of reasons, like hormones ect, and since when does being heavier exclude you from having a major related or unrelated health condition? I feel for your mom : (
A whole slew of things have happened to me recently, but I’m not really comfortable sharing the half of it here just bc a lot of people here are younger and might not know how to understand it. I used to be pretty sharing on here but idk I’ve realized when you’re going through really unusual struggles not everyone looks at it the same. I don’t mind chatting some more (maybe somewhere else?) with you and it means a lot to me that you care : )
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Yeah ikr! It’s honestly so insane. And American healthcare isn’t the best at sorting that kind of stuff out in my experience.
Thank you so much < 3
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Yeah Ikr! Unfortunately there aren’t enough doctors in my area so some kinds of healthcare are simply not available. For instance, my sister has been told she likely has ehlers danlos syndrome, a connective tissue disorder that effects all parts of the body’s function. It’s supposed to be diagnosed by a rheumatologist but because there is a lack of doctors, they are only taking rheumatology patients who have arthritis, which is more common and less serious. So instead she’s going to travel multiple states to a clinic costing about 6k dollars. And I’ll likely make the same trip next year.
Also, my illness has multiple layers if that makes sense. First poor genetic health, then traumatic childhood (related to autonomic nervous system dysfunction which I have), then the co-morbid conditions of poor genetic health, and then problems that come with lack of proper healthcare. It’s hard to find doctors who understand all of the health complications that come with this… or who have even heard of a situation this odd. Idk if that makes sense… lol.
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Thanks girl, I’ll pray for you too < 3
Ouch that doesn’t sound like fun. Yeah I’ve heard of that, my cousin has chronic Epstein bar virus and it comes back sometimes. It’s exhausting when stuff you thought you were done with still lingers… ugh. I tested positive for Lyme last fall but the doctor didn’t feel confident treating me, and now a few doctors later they are saying I actually have something else instead and test results were false 🙄
Oh also idk if you’re interested but do you know of drawingwiffwaffles on youtube? I used to watch her art videos all the time but she was gone for a really long time for health issues and she made a video about it recently. She’s a Christian and I think she had one of the best perspectives I’ve heard on the topic.
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You okay? I hope it’s nothing too serious 🙁
Not really tbh. This is the sickest I’ve been in 7 years of chronic illness and this has been one of the hardest years yet. I went to a new doctor at the recommendation of my mom and he messed up my health, I’ve been in a slight migraine state for almost 2 months since his treatment. I learned not to listen to my moms health advice last year but sometimes you just want to trust someone y’know? I guess I hit a point of weakness and gave in to her. I was on the up too, so it’s real painful. My sister is very ill as well and we recently found out my cousin has been sick for awhile too, so it’s looking to have a genetic factor. Anyways, every step I take I take two backwards but I’m learning so I’ll pretend I’m ok with it lol. Ty for the concern : )
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Thanks for the tag I’m rather too ill to participate in much of anything but I appreciate it anyways lol
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Guys can we just use one vote each? Idk how you’re counting it @rae but it seems like it might be kind of confusing if some people are voting twice and others once. I know its hard to pick but I think we should have a system lol, what do you guys think? Or we could all have two votes, but that’s a little complicated.
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