u/InitiativeUnusual168

to be cruel. I did it because I didn’t want to be observed by you. I felt stupid and over-exposed, like some idiot try- hard who just couldn’t get what everyone else probably already understood. I definitely had a massive vulnerability hangover.

Also, I was so angry that I caught myself devising manipulative posts to make you regret losing me. I caught myself wanting to rub your whole face in my beautiful life till you choked.

But that behavior is not aligned with my values so I removed the temptation. I do not play mean girl games. I am honest. I am direct. I am earnest to a fault. I am forthright, and with you I was very transparent.

It hurts me so much that you didn’t treat me with more gentleness and care. I really did think the world of you.

First time posting but I’ve been debilitated by LC since 9/2024. Definitely have the neuro-immune type so constant fatigue, cognitive dysfunction, worsened psych issues, occasional dizziness, shortness of breath, weird inflammation flares, GI issues, occasional MCAS kind of itchiness.

I had been working with a nurse practitioner PCP from before onset till Jan 2026 when I could no longer afford private insurance. She referred me to cardiology and hematology but never gave me any restrictions or limitations despite me describing the constant fatigue, PEM crashes,having to get CT scans and MRIs for weird GI and inflammation flares during PEM crashes.

Frustrated at the lack of care and testing that I asked for multiple times, I flew to Chicago last November and was seen at the Neuro Long Covid clinic out of Northwestern. They did an NIH Toolbox test and confirmed cog dysfunction and said to limit exercise (NOT ACTIVITY, but EXERCISE) to 5 min followed by rest, but no timeframe on rest. Said something about staying under my heart rate limit but no specifics on that despite me sharing my Visible data and I think my cardiology reports.

All of this made it very easy for my LTD insurance co to deny my claim for benefits. So I’ve been living off savings and my IRA for the last year. I’m only 47 and I am now out of money and in danger of losing the home I’ve had for 20 yrs in a trendy part of town.

As of April I am having to start over with new doctors since I’m on state Medicaid. They’re basically sending me for the same cardiology work up (stress test, EKG etc) despite me telling them I already did all that last March and shared my records from Northwestern. I told him I’m pretty sure I have orthostatic intolerance due to heart rate spiking so much doing basic things like showering, etc. you guys know the drill. I asked about being tested for OI and also asked about a 2-day CPET to proved PEM/PENE.

He insisted on doing the regular cardio work up and bloodwork. Ordered another heart rate monitor. I asked if there was anything I shouldn’t do, and he said no to do my normal. Oh yeah, since it’s Medicaid this guy was a resident.

The attending physician came in and said he agreed with the resident. And when I asked HIM if there was anything I shouldn’t do, he looked at me like I was a disgusting leach and a liar trying to game the system and said no, just do my normal.

So I am tempted to just act like I used to pre-Covid despite the crash I know I will come just to make them give me specific restrictions and limitations. I used to be a consulting technical writer and business analyst working with Fortune 500 fintechs and their developer teams. I used to go hiking every Sunday and dancing on Saturday twice a month. I used to clean my own house and buy my own groceries and work on my old house and garden and now my own lawn etc.

I know pushing beyond my capacity (which is 10 pace points for you visible wearers) will hurt me and my capacity big time.

At the same time, I need to apply for SSDI and I’ve read all the horror stories and I am a single woman with ZERO family support and I NEED OBJECTIVE IRREFUTABLE TESTS to show what is happening to me and how it limits my fiction and capacity to work and do basic self care. I cannot risk applying and it dragging out forever with appeals and such. I will be homeless by then and honestly FUCK THAT.

Trying to manage this myself and give myself restrictions and limitations doesn’t work. So I’m thinking just push and push until doctors finally do it????

Anyone try this or have a less harmful way of getting doctors to put specific restrictions and limitations in your chart????

I am in dire straights and at a total loss. Would love any tips! What worked for you?