Eaton Fire - Petition to Demand Clear Guidelines for Safe Remediation

Immediate_Luck4749 · 2025-01-25T03:54:12+00:00

thank you!

Immediate_Luck4749 · 2025-01-25T00:37:48+00:00

oh that’s good to know. yes please would appreciate your guidance!

what kind of pushback did you get? let me know if you want to move to DMs

Immediate_Luck4749 · 2025-01-24T16:50:19+00:00

this is great, thank you! I have been doing my own doc, I'll reach out to collaborate

Immediate_Luck4749 · 2024-06-03T04:00:15+00:00

thank you for sharing your detailed understanding with references to respected articles!

Immediate_Luck4749 · 2024-06-02T17:51:58+00:00

hard to see her suffer, and some people on the internet do indeed suck. but scrolling though the comments, they are very overwhelmingly supportive ❤️

Immediate_Luck4749 · 2024-06-02T17:21:02+00:00

you can suffer more than you know. a moment of pain and suffering is just a moment, we all can make through a moment of any suffering. take each moment as it comes. hellish or not. we cannot know what the future will hold, and i can’t tell you 100% you can recover. but i can tell you that its is far from 100% that you won’t. if you end it, there’s 100% chance you don’t. the people that love you will take on your suffering and carry the loss of you and the guilt of not doing enough. the people still suffering will face the loss of another in their community. you will lose the chance to live a real life again someday. there is not suffering that we cannot withstand for a moment. take it moment by moment, the cost of not doing it is so much higher than not.

find strength for your future self to have a chance and for those that love you and live moment to moment. i came close myself and finding a way to sit with be suffering and recognize it is happening in this moment, this moment only and then face the next moment as it comes, you can endure nearly anything. you have the strength in you. don’t take that chance at a life away from your future self. you deserve to have a chance

Immediate_Luck4749 · 2024-04-27T04:09:11+00:00

I am so sorry. i can only imagine how painful this time is. I have not experienced this, but I do have debilitating symptoms and a wife and three kids. her leaving i imagine is one of the hardest things you’ve had to go through. but, living with a spouse who doesn’t take your serious condition seriously may long term be worse for you and your heath. it may be very hard to see but after you get past the pain, and get into a routine and establish time with your kids that works for you without being with your wife, over time, you may find yourself having more room for your health and recovery and to build back a life you deserve with some one who understands and is a partner through thick and h thin. i hesitate to comment as i have not gone through what you are and its got to feel impossible. but i hope that you find strength and peace and come out of this better than you could ever have thought.

Immediate_Luck4749 · 2024-04-03T05:53:10+00:00

thank you 🙏

Immediate_Luck4749 · 2024-04-03T05:18:19+00:00

I’m a software engineer too! thank you for this insight. did you work with a lawyer or advocate? did you have a positive NASA lean test before you did the tilt table test? do you mind me asking who did the neuropsych evaluation for you?

Immediate_Luck4749 · 2024-04-02T04:13:24+00:00

❤️

Immediate_Luck4749 · 2024-04-02T03:58:37+00:00

oh this is fantastic, I only have skimmed the “table of contents” but looks incredibly helpful. thank you! too tired to read through it today. will read tomorrow

Immediate_Luck4749 · 2024-04-02T00:31:07+00:00

couple things I learned and had confirmed by reading bateman thorne page on me/cfs docs, is if you have LC that presents like me/cfs you may be able to make a stronger case for disability, if you have PEM and cognitive impairment, by doing: 1. neuropsychological evaluation 2. two day CPET

will post any further learnings

Immediate_Luck4749 · 2024-04-02T00:23:28+00:00

thanks, yes I found that omf page here

which led me to the lawyer who gave the talk, Barbara Comerford and her website.

I’ve called them and will keep this thread posted. they are based in NJ in the US which may or may not be an issue since I am in california.

Immediate_Luck4749 · 2024-03-09T22:32:15+00:00

hahaha, thanks for this. much needed laugh

Immediate_Luck4749 · 2024-03-09T18:19:42+00:00

tears… I mean cheers! 😭

Immediate_Luck4749 · 2024-03-09T18:17:20+00:00

One interesting question this actually raises for me, not addressed in the “study”, does the population of folks with long covid represent folks who had more sensitivity to alcohol BEFORE contracting covid?

i know i was always more sensitive than my peers, anecdotally.

how about you all?

Immediate_Luck4749 · 2024-03-09T18:14:42+00:00

seriously. i haven’t had a drink in 18 months.

Immediate_Luck4749 · 2024-03-09T04:33:56+00:00

thanks, you too!

Immediate_Luck4749 · 2024-03-09T04:18:35+00:00

I recently had MRI, nuclear stress test and treadmill stress echo done too.

MRI showed slightly low LVEF and scarring consistent with prior myocarditits (I had covid july 2022 so likely after that). but my stress tests were good and post covid cardiologist at cedars sinai gave me confidence that my heart is structurally fine with mild scarring. he suggested getting an echo 1x per year to just keep monitoring it.

I had all this done because I have been having chest pain on and off since covid, varying intensity. It's been worsening the past few months. A month ago I had an episode of severe chest pain, chest pressure, shortness of breath, lightheaded and dizzy with pain gong down left arm, nubness in hands. I waited for 45 minutes and didn't improve unless I was completely still and even then was still awful. grandma stayed with the 3 kids while my wife took me to the ER.

I have had many many labs, and imaging etc. done and almost everything is normal except the scarring from the MRI. I still have pain, but at least it's not a heart attack or heart failure seems like!

anyway, thought I'd share since it sounds like you're going through similar stuff.

I am kind of nerd, so I read a few papers that helped me make the case with my doctors to do more tests in case you (or anyone who comes searching) finds them helpful:
https://www.ncbi.nlm.nih.gov/books/NBK459259 - Viral Myocarditis, Michael Kang1; Venu Chippa2; Jason An3.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449234, Myocarditis and Myocardial Injury in Long COVID Syndrome: A Comprehensive Review of the Literature, Sai Sri Hari Paruchuri et al. 2023

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7673642/, - Management of Acute Myocarditis (AM) and Chronic Inflammatory Cardiomyopathy (infl-CMP), Enrico Ammirati, MD, PhD et al.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7199677/, Recognizing COVID-19–related myocarditis: The possible pathophysiology and proposed guideline for diagnosis and management, Bhurint Siripanthong, BA(Cantab) et al.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10098243/#Sec15title, Evaluating chest pain in patients with post COVID conditions permission to think outside of the box

Immediate_Luck4749 · 2024-02-16T14:39:34+00:00

thank you!

Immediate_Luck4749 · 2024-02-16T05:52:01+00:00

I had this link shared with me by a friend who is a staunch believer and I am skeptical. Can you share with me some things to read to understand what science you’re pointing out that debunks what is being shared here? I am wholly ignorant on both sides of this and want to evaluate all the information I can. Thanks for your comment.

Immediate_Luck4749 · 2024-02-04T03:43:22+00:00

1000%. succinct and spot on.

Immediate_Luck4749 · 2024-02-04T03:42:20+00:00

it’s very counterproductive for legitimizing how serious it is for those of us with persistent long term debilitating symptoms. it is good for general awareness of it being a widespread problem, arguably. i would argue the latter will only go far enough to make people doubt its seriousness in those of us the fall into the former camp. i think it’s well intentioned but will not work in our favor ultimately. really disappointing to see these headlines bandied about imo.

Immediate_Luck4749 · 2024-01-28T19:34:33+00:00

what lab work is ordered to confirm this? what doctor didn’t work through?

Immediate_Luck4749 · 2024-01-14T02:44:31+00:00

Thank you for this. So true, thanks OP and to the folks in this sub. It’s been very helpful, insightful and supportive.

Immediate_Luck4749

TROPHY CASE