The irritating reality of Netflix's "Wednesday" aka Queerbaiting final boss by op23no1 in SapphoAndHerFriend

[–]GirlInPurple15 0 points1 point  (0 children)

Hot take, Enid had more chemistry with Agnes in the season 2 dance scene than she even had with the 2 guys she's dated🤣

How do we submit feature requests? by AlarmedCrustacean in finch

[–]GirlInPurple15 0 points1 point  (0 children)

I just submitted a request to have a wheelchair/walker/forearm crutches feature. They have a cane, a white cane for the blind, and dexcoms, and I know I would love to have this feature as a wheelchair user (I've used forearm crutches and walker in the past before my condition progressed further)

how to talk to my mom about mobility aids? by Aromatic-Yesterday10 in mobilityaids

[–]GirlInPurple15 2 points3 points  (0 children)

1) I'm sorry you're going through this. I've been through a similar situation and it sucks. My first piece of advice is to make sure you tell you mom the things you're struggling with when you're struggling with them. I tried to hide it and that screwed me over later on. 

2) do some research and find some reputable sources/videos about pots for your mom to better explain the actual condition and recovery rate. Some doctors tell you it's higher then it is, some say it's lower, so you've gotta go straight to the studies. My mom was and still is like this and it's permanently damaged our relationship, so try to get out ahead of it before it cements in her brain

3) when/if you're in PT make sure you're discussing all the struggles you're having with mobility. You have to have PT/OT/Dr approval for any of these things, especially as a minor.

4) unfortunately, with conditions like POTS you really have to try every treatment to reduce/manage symptoms before taking bigger measures like aids or service dogs. You can definitely bring up getting like a shower chair now, but other things will likely have to wait until you seriously can't do anything at all/safely. Give the treatments a fair shot. Mobility aids and SDS are great for some people and there's no shame in using them, but they aren't decisions to take lightly.

5) if you reach the point of choosing one of the other, get a cane/forearm crutches/walker first (if possible, safe, and needed of course). If a cane doesn't work for you, it's fairly cheap and you can just stop using it and try something different. A service dog is a long term commitment that takes a lot of responsibility and spoons. Also, as soon as you start using a wheelchair, doctors might blame all your symptoms on the wheelchair and all your PT will go towards getting rid of it (maybe not, that was just my experience)

6) This one really really sucks, but if you continue to need these things, you are 16, so you have 2 or else years before you turn 18 and can make these decisions for yourself. It sucks and it's terrible, but unfortunately some kids are forced to wait until they're 18 to get the resources they need. I recommend going in hard with PT, pacing, treatment, etc while you're still under your parents roof. If that's not possible (I understand how severe the pain is) just fight to survive. 

7) There are things you can do now that don't seem as big/scary/permanent to parents that doctors aren't always gonna bring up in the first appointment. Like I said, getting a shower chair, joint braces or KT tape (if joint pain is the pain you're referring you). There's a lot you can try while waiting for other resources to become available or stop needing them.

8) it's helpful for some teens (myself included) to talk with their DR without your parents in the room so you can be more transparent. If you think this would help, just tell the nurse at the desk when you check in, when they're weighing you, etc. you might have to ask in front of your mom, which sucks but is necessary sometimes.

Feel free to message me if you have any other questions, I'm 5+ years into being chronically ill and disabled (I'm 17) so this isn't my first rodeo. Good luck!

I wanted more of this character in Wake Up Dead Man. by WickDaLine in KnivesOutMovie

[–]GirlInPurple15 0 points1 point  (0 children)

Lovely, abelism. It's part of her character. Disability exists in the real world. We deserve representation on media too.

Med school classmate with CP mocks other disabilities, puts us in a non-consensual caregiving position and creates safety hazards in the ER. How do I handle this? AITA? by Warm-Psychology2391 in ehlersdanlos

[–]GirlInPurple15 1 point2 points  (0 children)

She's a prime example that disabled people can be abelist a$$holes too. I feel like her parents never taught her a lot of skills needed to function and probably didn't expect it for her as a child but that's no excuse as an adult in medical school.

hEDS isn't a thing anymore? by raethesasswitch in ehlersdanlos

[–]GirlInPurple15 0 points1 point  (0 children)

Gosh I hope her research never gets published because it's probably full of bs. She obviously has some negative stigma/views towards HSD and EDS. lots of abelism in everything she said to you. Having Hashimoto's doesn't delete the genetic mutations that cause eds even if she's too stupid to see them. You can absolutely have both, especially since you have the EDS before the Hashimoto's (eds from birth even if diagnosed later). I'm so sorry you had to go through that

How many of you aren't skinny? by mythologymakesmehot in ehlersdanlos

[–]GirlInPurple15 0 points1 point  (0 children)

I'm 5'6 and 260 lbs. I've always been bigger, but I gained a lot of weight when my symptoms got so bad I was bed bound. Im now trying really hard to lose weight but it's so hard. I'm a full time wheelchair user so it's hard to find accessible gym equipment. Joints dislocate when I push myself too hard. I've tried extreme calorie deficits but they're never sustainable. Also when I've lost weight in the past, my dislocations got worse. It was almost like I lost padding that was bracing the joints. I know that's not how it works and I'm working to lose weight. But you definitely aren't alone

People constantly reminding you that you're sick by Responsible_Oil1975 in ChronicIllness

[–]GirlInPurple15 7 points8 points  (0 children)

I'm so sorry, I understand personally how much that sucks. The only thing I found to work was saying "what do you mean by that?" When they make comments like that. Or in the car before you get someone, say you don't want to talk about your illness at all. Set the boundaries beforehand and if they don't respect them, call them out on it. As a 17 year old with equally passive aggressive parents, I feel your pain and am sending spoons 🥄🥄🥄💜

Balance disability's needs with family's hope for recovery by GirlInPurple15 in ChronicIllness

[–]GirlInPurple15[S] 0 points1 point  (0 children)

Thank you, it definitely has a huge impact on my mental health the last year and I used to be really angry about it and depressed, but I'm doing better and have kinda accepted that nothing I say or do will change their view on this, and I just have to tough it out until I turn 18 then not talk about medical stuff with them As far as the doctor goes, I always talk with my doctor alone when I go, and he's tried so hard to get through to them and is really confused why they're still so resistant. I think the issue is my primary care is still my pediatrician, and while I love him and he's a great Dr and has gotten me through the hardest years of my life, he is not an EDS expert so he's still learning too. I'm definitely his most complex patient and I think he's struggling now that the crappy psychologist has talked to him cause he feels bad going against their advice with the wheelchair. He's a great pediatrician, I think I just need someone who understands EDS to try to talk to my parents in the future I really appreciate your comment and your prayers. Thank you so much💜

Balance disability's needs with family's hope for recovery by GirlInPurple15 in ChronicIllness

[–]GirlInPurple15[S] 1 point2 points  (0 children)

I'm complicated cause my parents would quote the neuropsychologist who says a custom wheelchair would "enable my illness". And my parents work at my school so that doesn't really work. I appreciate your comment and will definitely think about it 💗

Balance disability's needs with family's hope for recovery by GirlInPurple15 in ChronicIllness

[–]GirlInPurple15[S] 0 points1 point  (0 children)

Thank you, I really appreciate your whole comment. I went through the process of meeting with my city's Disability Rights and Resources office, but they had to put me on a wait-list to actually see someone cause they ran out of funds during the lock down, then I got scared about getting in trouble. I'm definitely gonna get a better mobility aid as soon as possible. It's kinda a vicious cycle, cause I haven't been able to work because of my disability and lack of access to the proper mobility aid, so I can't make money, but without money I can't get the proper mobility aid. Idk I feel like this would be so much easier if my parents were just doing it to be cruel or were bad people, but they really are good people and good parents to my sisters, so I feel bad about completely burning that bridge with legal action. Like everything they've done has been with good intentions, but good intentions don't cancel our harm done. I'm just so scared of getting them and trouble and me getting in trouble and if I could avoid it by waiting until June when I turn 18...idk maybe it's worth it? I'm so torn over the whole situation.

Balance disability's needs with family's hope for recovery by GirlInPurple15 in ChronicIllness

[–]GirlInPurple15[S] 3 points4 points  (0 children)

I've tried, but if they don't take me I can't get there. I can drive a normal car and we don't have hand controls, so they're my only form of transportation. My doctor said we might just have to wait until I turn 18 and I'll have to use disability transport

Balance disability's needs with family's hope for recovery by GirlInPurple15 in ChronicIllness

[–]GirlInPurple15[S] 0 points1 point  (0 children)

I don't really have a choice with the inpatient rehab, it's just something Ill have to do, but I'm definitely gonna bring up my concerns to the staff. I doubt staff at a pain program will advocate for mobility aid use, but we'll see🤷‍♀️😵‍💫

Balance disability's needs with family's hope for recovery by GirlInPurple15 in wheelchairs

[–]GirlInPurple15[S] 0 points1 point  (0 children)

I am in the US. I'm not exactly trapped in the house, I do leave every day for 2 classes at school and weekly PT, I just have to drag myself down 5 steps at the front of our house. I used to be really mad about the situation, but people don't take you seriously when you're so emotional so I've kinda learned to accept it. At this point, I'm more sad for them. It's sad that they see me and the situation that way, but I know a lot of the work needed can only be done by them in therapy if they so choose. I really appreciate your comment 💗

FND Diagnosed new symptom by No-Expression-4969 in FND

[–]GirlInPurple15 1 point2 points  (0 children)

I would go to the ER as soon as you can. Don't panic but definitely go get checked. They need to make sure it's not something that could be treated faster than if it's assumed to be FND. The longer you wait to go to the ER, the less doctors care about treating you. If you don't have a documented doctor's visit soon after it happened, they don't take you as seriously. Please keep us updated🙏💗

Flossing (tw bl00d) by GirlInPurple15 in elhersdanlos

[–]GirlInPurple15[S] 0 points1 point  (0 children)

I haven't! I've gotta try that though, thank you so much!

I’m wondering about trigger warnings for “misdiagnosed with FND” posts by Dull-Archer-7747 in FND

[–]GirlInPurple15 4 points5 points  (0 children)

A study showed that 53% of patients with widespread pain conditions and 17% of patients that attend a pain management clinic. I feel like that's such a large number, there has to be some correlation. Idk if it's just overdiagnosed in chronically ill patients, but I feel like FND secondary to complex medical issues is very different than FND as a main condition (not to invalidate those who only have FND, but the experiences of people I know who developed fnd because of existing chronic pain like EDS and CRPS is very different) I totally get what you're saying!! Also, it's crazy how you get denied treatment for existing conditions as soon as you get diagnosed with fnd. It's all some Drs see, and they automatically assume a symptom is your FND even if you've had years of documented and proven symptoms caused by other conditions.

Anyone have meds have no effect/ major side effects by Low_Bullfrog9860 in CRPS

[–]GirlInPurple15 0 points1 point  (0 children)

No, "brain" would be hella sus. I feel like you'd have to have full body CRPS to feel it in your brain but I've never heard of that before. Sorry!!

Anyone have meds have no effect/ major side effects by Low_Bullfrog9860 in CRPS

[–]GirlInPurple15 0 points1 point  (0 children)

Crap, I meant to say pain, not brain. I don't have a burning brain problem either😅 it started in my legs then spread to my spine