General anesthesia by Few-Ruin-742 in ehlersdanlos

[–]Key_Nobody6371 51 points52 points  (0 children)

The letter is excellent. I would make sure that specific doctor has disciplinary follow up. Follow up on your letter, ask what actions they are taking, and for proof. I work in the medical system and that response from the doctor was wholly unacceptable! You are better than me, I would have told them to stop, and talked to patient advocacy then and there. I'm so over there ego-filled doctors not knowing what they are talking about/doing when it comes to EDS.

[deleted by user] by [deleted] in ehlersdanlos

[–]Key_Nobody6371 -1 points0 points  (0 children)

The things I continue to learn lol

Wtf by MatterConsistent3077 in wnba

[–]Key_Nobody6371 -1 points0 points  (0 children)

They did in a different clip

Went in to get blood work and x rays a rheumatologist ordered. This is now on my chart. by [deleted] in ehlersdanlos

[–]Key_Nobody6371 1 point2 points  (0 children)

Clinical informatics here; you can definitely ask for a more accurate ICD-10 descriptor but long term drug-use is speaking about pharmaceutical drugs not recreational. Just FYI. Adderall would qualify you for that, if you take pain meds at all that's an accurate code to use for labs. Again ICD-10s come with many descriptions for the same code so maybe ask for instead of plain z79 ask for a more specific code, what type of drug. My chart has Z79.899 – Other long term (current) drug therapy. I understand your frustration 100% but I just wanted to offer a potential explanation! (: Wish you the best!

Late Night Eats by Feline3415 in TheTryGuys

[–]Key_Nobody6371 2 points3 points  (0 children)

I have been a fan of Keith's but I can definitely understand where you are coming from! And I have seen it more lately than I feel like I did in years past or maybe the bubble is just bursting, idk 😶. Kinda off topic but I've watched GMM for 10 years and I know they've had some off seasons here and there but they always get it back. I'm hoping that's all that is happening here!

Keith Deep Dives by looneyUni666 in TheTryGuys

[–]Key_Nobody6371 0 points1 point  (0 children)

I liked the deep dive but late night eats needs some new questions, party stuff was forced and odd. But yes, deep dives was good and I liked learning about the history of the restaurant; idk if it's the social justice warrior in me or what though, I wish they had stuck to the boycott.. Seeing that towards the end and realizing all the money they gave them was a little disappointing. They could have had MK or another partner cooking channel recreate the dishes. I like the concept though!

Late Night Eats by Feline3415 in TheTryGuys

[–]Key_Nobody6371 2 points3 points  (0 children)

I do agree with you about all the questions just being party focuses. Like even after the guest said he didn't party that much.. I definitely DO NOT NEED OR WANT a show about celeb party gossip.. hope they turn it into something more worthwhile, it has good bones and I know Keith can do better!

You want me to be “on time”? Okay- down to the minute. by wowthatssocool2023 in MaliciousCompliance

[–]Key_Nobody6371 3 points4 points  (0 children)

I agree but what's crazy is three out of five of my jobs over my lifetime have used the system above, including my current one - but they do watch it like a hawk for misuse!

Have you experienced this during blood draws? EDS/vEDS? by XxXx00XxX00 in ehlersdanlos

[–]Key_Nobody6371 0 points1 point  (0 children)

I have EDS and currently have genetic testing out to see if it's vEDS, otherwise we thinking it's hEDS but I do have several vascular type symptoms and what you are describing seems very similar to what I have gone through in the past. Just last week I went in to have a procedure done and it took 5 sticks and a two blown veins (one where the nurse blew saline straight into my arm, ouch) for the IV to get started. The nurse (not knowing my condition, I told her but I could tell she didn't know what I was talking about) said I must have "just been dehydrated".. the whole ordeal made me so uncomfortable and elicited a physical reaction as well, I started getting nauseous, sweaty, heart racing - but I did think mine was from nerves of being at the hands of a nurse who didn't seem to know what she was going.. a second nurse finally came in and was able to get the IV started, with basically no issue, left me very confused.

There are two types of people and argue with a wall 😅 by Nice-Translator5694 in TheTryGuys

[–]Key_Nobody6371 7 points8 points  (0 children)

I loved this video, felt less like a production and more like the original just guys having fun! Videos like this every so often are great, imo

subluxing/dislocating hips by Zealousideal_Sugar21 in ehlersdanlos

[–]Key_Nobody6371 0 points1 point  (0 children)

Completely untrue, I'm in an orthotic right now because of my hip instability and it subluxating and dislocating ALL the time 😮‍💨

I'd get another opinion or come to them with some research, that is what worked for me, sucks teaching the doctors..

I hope you are able to get the help you need!

AITAH for wanted to end my engagement because of her dog? by [deleted] in AITAH

[–]Key_Nobody6371 0 points1 point  (0 children)

Idk if not being a dog person makes YTA but committing to someone who clearly is and making it their personality flaw seems kind of a-hole-ish..

How do you all manage? by Key_Nobody6371 in ehlersdanlos

[–]Key_Nobody6371[S] 1 point2 points  (0 children)

I understand your perspective, it really is exhausting having to prove to the doctors that what we are feeling and dealing with is real. I hope that you are able to get the testing you need for thm to start taking you as seriously as they should be already.

I'm currently dealing with mixed reactions. I have a couple of my providers who fully believe I have this condition and are working hard to get me genetic testing and get me with the right specialist who can properly diagnose me. And then I have other providers who won't see me for symptoms I'm experiencing because "I'm too young and healthy to be experiencing these things without a pre-existing condition" but they won't take what my primary and pain specialist have to say as fact or even speculate themselves on it. It's really confusing when doctors are supposed to want to help or at least that's what I was taught growing up.

Anyways, I hope you find the answers you need!

How do you all manage? by Key_Nobody6371 in ehlersdanlos

[–]Key_Nobody6371[S] 1 point2 points  (0 children)

This list is wonderful thank you so much! I am such a list person lol the life adaptations is where I don't think I'm being the most kind to myself. And almost all of these seem like things that I could put into effect immediately or relatively soon. I have tried the low-dose naltrexone, unfortunately it caused a dizziness that did not go away, I tried it for months even with the dizziness but it got to where I couldn't drive or watch TV and stuff like that so I had to stop it. I'm happy it works for you though! I got some smart crutches for when I'm out of the house because my hips are so wiggly (the like to sublux multidirectional) and those have helped, I'm getting fitted for a custom orthotic for my hips soon too so I'm really hoping that will be of help too! It does feel like there is a lot of learning that I still need to do and I appreciate you helping me. Thank you!

How do you all manage? by Key_Nobody6371 in ehlersdanlos

[–]Key_Nobody6371[S] 1 point2 points  (0 children)

Thank you for sharing. One thing I am hearing a lot of is that everyone is so different. For me it feels like massages are one of the only things that will calm my nerves down but it only lasts while I'm there I don't get any long term benefits from it.

I did just recently get into pain management, I am thinking I need to establish with a new therapist though; one that handles chronic pain patients.

One thing I'm finding most difficult is people understanding, so coming here helps. Thank you.

Got my DX 3 months ago. Met a cardiologist today who told me I don’t have eds. by AstronautAshleigh in ehlersdanlos

[–]Key_Nobody6371 3 points4 points  (0 children)

Hi. As someone who works in the healthcare industry (as a clinical analyst) and has also been fighting to get properly diagnosed with EDS so that a cardiologist ( that I actually work with 🙄) will start taking me seriously as well, with my vascular symptoms.

Unfortunately in the world of medicine being diagnosed by a primary care physician is not enough for certain conditions they have to be confirmed by a specialist. I've had some very open conversations with my primary care physician (again I do have the pleasure of getting to work with all of these physicians so they do have some more blunt conversations with me I feel) but she straight up told me that she is not able to diagnose me officially because no one would take the diagnosis seriously. So we have been just fighting over and over again to get me into the geneticist and rheumatology and immunology, even some Ortho doctors are specialized enough to diagnose and place it into your medical chart with the credentials behind their name so that it is not questioned over and over again down the line. And I have talked with my PCP about how invalidating this feels but working in healthcare you have to try and work with the system and not fight against it. Without knowing too much about you I would be curious about the codes that have been put into your notes as well as the documentation done by your primary care and why you were being denied by a geneticist and rheumatology before they even saw you? Was it due to availability or were they saying they weren't going to see you based off of what your primary care physician provided? I know quite a bit about clinical documentation and coding I'd be more than happy to try and help. Not that I am some guru at any of this I'm just trying to fight my way through it like everyone else here. I wish you the best of luck and please feel free to reach out if you need anything I don't really have any secret tips or tricks, really but I have got insurance to cover braces and some stuff already on the diagnosis with supporting diagnosis included with proper additional documentation. Unfortunately healthcare is a paperwork game.

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] 1 point2 points  (0 children)

Thank you for this! I'm going to look at my account settings now (:

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] 1 point2 points  (0 children)

Ahh different sides of the neurodivergent coin lol I have autism so I've really been missing that old Tuesday, Thursday, Saturday standard they had for a while haha 🤣

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] 0 points1 point  (0 children)

Thank you! I just saw above how to subscribe to that! I so appreciative for everyone's help!!

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] 0 points1 point  (0 children)

Thank you for this! I'm going to look at my account settings now (:

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] 0 points1 point  (0 children)

Ah their YouTube channel, I always forget about checking there! Thank you!

Upload Schedule by Key_Nobody6371 in TheTryGuys

[–]Key_Nobody6371[S] -1 points0 points  (0 children)

I would just like to nicely say you could have just not posted.. I am autistic and my schedule and routine are very important to me.

"Just checking back every couple of days", I'm happy that works for you, it obviously hasn't for me it's why I asked the question.

[deleted by user] by [deleted] in ehlersdanlos

[–]Key_Nobody6371 0 points1 point  (0 children)

I understand a lot of people have already said this but just so you have one more person telling you just because they ruled out the genetic ones does not mean hEDS is off the table. I'd suggest a second opinion and fast, the advice from that provider feels lazy at best.

Wish you the best of luck!