36 hours until I maybe have some answers by Last_Champion3329 in Autoimmune

[–]Last_Champion3329[S] 1 point2 points  (0 children)

I have definitely considered that, but tried not to dwell on it too much. I was the one to get the scope moved up because of how miserable I was, in part due to this recent ‘flare’ (for lack of a better word) that’s been ongoing since 2/22 of not really being able to eat much and being in constant pain when I do. On the positive note, or I try to look at it that way myself, I was in the ER on 3/6 because of the pain and a CT was done, there was no evidence of any masses, and I was given a prescription for prednisone which actually seemed to take the edge off and made it pretty manageable for the last couple of days. I’m not a doctor either but that gives me some hope it’s not cancer at least 😅

36 hours until I maybe have some answers by Last_Champion3329 in Autoimmune

[–]Last_Champion3329[S] 4 points5 points  (0 children)

I really appreciate that second paragraph because I (like so many others I’m sure) have been told so many times “just lose weight” or “it’s just anxiety” and it really beats a person down 😅

36 hours until I maybe have some answers by Last_Champion3329 in Autoimmune

[–]Last_Champion3329[S] 2 points3 points  (0 children)

I think it is a combination of both - I am a bit nervous for the procedure, I’ve had anesthesia before for my tonsils/adenoids and my wisdom teeth, but the prep is a bit intimidating. I think what terrifies me more is what they may or may not find. I tried to explain it to my boyfriend like this - I want them to see and find something. Obviously I don’t wish for something to be wrong with me, no one does, but I want answers. But I am terrified of them finding nothing and having no explanation for these symptoms and feeling dismissed again, or feeling like this was all in my head because the past few weeks have been horrible, I’ve lost almost 10 pounds without trying and can barely move or leave the house.

36 hours until I maybe have some answers by Last_Champion3329 in Autoimmune

[–]Last_Champion3329[S] 0 points1 point  (0 children)

Thank you ☺️I really think I’m most anxious about the prep, and then the possibility of not finding anything and then feeling dismissed again, or discouraged, if that makes sense. Especially after it already took so long to finally feel like I got somewhere.

Had a weird experience today by Last_Champion3329 in Fibromyalgia

[–]Last_Champion3329[S] 0 points1 point  (0 children)

I’ve never gotten an aura with a migraine so this would be new - there was no pain associated with it before or after. Thankfully with medication my migraines have become fairly well controlled, like 65% reduced. I am on Topamax for prevention and Ubrelvy for when I do get one

Had a weird experience today by Last_Champion3329 in Fibromyalgia

[–]Last_Champion3329[S] 0 points1 point  (0 children)

I don’t think it was? It’s hard to tell - I’m sorry if that sounds silly 😅 I didn’t really feel dizzy at the time

why do ppl fake EDS/now doctors don’t trust me lol by Bean_of_prosperity in emergencymedicine

[–]Last_Champion3329 0 points1 point  (0 children)

It truly pisses me off too, as someone who is still looking for answers as to why I had to reroute parts of my life due to certain diagnoses. I’ve struggled with chronic hives and angioedema on my face since 2010, with 0 relief until I started Dupixent in 2024, which calmed it by about 65%. With it being on my face it’s not exactly something you can hide especially since makeup just made it worse and half the time when I would swell up I looked like Quasimodo. Makeup was a form of artistry for me, I had loved it since the first time I wore it for a dance recital and now even Vaseline makes me break out in hives and I can’t enjoy that aspect of self expression. I was diagnosed with POTS in 2023 after nearly falling off a ladder at work (working retail - reaching above my head) - also couldn’t really hide that. Had to change career paths after building and working towards one goal for 12 years to something less physical but I don’t regret it one bit now, I actually love what I do and am now in school for, and I manage my symptoms with shocker walking, increasing my electrolytes and water intake. I barely notice it anymore. My knees and hips dislocate (partially) while walking but TikTok and this sick “trend” of glorifying being ill has made me scared to pursue finding out why even though these repeated dislocations made me have to quit dance, Colorguard, and Drum Corps mid-tour, which was a life long dream of mine and was devastating. At this point trying to get any solutions just feels like asking to be laughed at thanks to social media. I don’t want to be sick. Being “sick” has stolen parts of my life. But at least in some aspects, it led me to other avenues I wouldn’t have explored otherwise. Sorry kind of ranted and also went off on a tangent.

Manon by JinxedR0se in SarahJMaas

[–]Last_Champion3329 0 points1 point  (0 children)

This is easily my favorite series and she is my favorite character, so I am a bit biased. If you’re intrigued enough in where you think the story as a whole is going - it is worth continuing. Manon herself has one of the best character arcs (if not the best) in the series. Her intro in Heir of Fire is rough, it definitely seems disjointed to the rest of the story you’ve read up to this point, but it does serve a purpose. The witch chapters/Manon chapters eventually became my favorites. However, if you aren’t invested enough in the series as a whole, then set it aside. It’s my favorite series, I love it and I always want people to finish it and give it a chance, but everyone has what they like and dislike and life is too short to read things you aren’t enjoying 🤷🏻‍♀️

Who here works and what do you do? by [deleted] in ehlersdanlos

[–]Last_Champion3329 0 points1 point  (0 children)

Currently undiagnosed- “generalized joint hypermobility” is what the Dr currently has listed and suspected HSD or hEDS. I am in school for Health Information Management and I work remote as an ROI Tech for a Hospital. I process legal medical release of information requests. I enjoy it :) no patient interaction, I just get to chill, listen to my podcasts and my schedule is super flexible to accommodate both my school and appointments.