u/ExitWeird9697

As I’m moving through the health care system (in CA) trying to diagnose and understand and heal(?)… I’ve become my own subject matter expert.

I went to the doctor and just honestly told her what all is happening. Weak and painful joints, overwhelming fatigue, regular falls and fainting, horrific neck pain and migraines… you know the drill. And she looked at me like I was speaking another language. Like, “huh, that’s weird… anyway…”

So I researched. I read probably the entire internet. I bought and read Disjointed. I spoke to every family member I have left. Now I know how to describe my symptoms, but giving her all the magical key words is not getting her any closer to diagnosis. She conceded hEDS and costo (though she won’t name it), but I’m certain there’s POTS and CCI or something similar.

Meanwhile, I bought myself a cane. A c-collar. An assortment of braces and compression gear. I already had a walker from a prior injury which I’m using more and more. I bought a shower chair so I don’t delete myself. I’m eyeing a certain wheelchair. I’m looking at a place that may be a little scammy but they’ll sign the papers to get me a handicap placard.

This has been the longest freaking process ever, and anything I have to show for it I did MYSELF. That’s not how this is supposed to work dammit.

Like this might be a duh moment for the rest of you, but I’ve been going to Renaissance Faires since I was 6yo. We have traditional garb and always took it very seriously.

As my symptoms progressed and walking became an issue, I’ve caught myself looking at my corsets longingly, and wishing I could just wear them in my daily life.

💡

Is it because of the massive support they offer? Maybe I SHOULD be wearing a daily corset!!

LOCATION: California

I had mediation yesterday. We landed at the mediator’s proposal and have til Monday to accept.

Except I think I’ve been so completely undervalued, I would absolutely hate myself if I did accept. My lawyer says that this is a good deal and he feels that he’s hit the threshold of having done right by me. Honestly, he has been wonderful and fought like a shark, but I think mediation was a place where all accountability and recognition of liability was completely skirted.

So I need another perspective.

I was pregnant. I went on maternity leave from the fire station where I worked. The chief was pissed that I was planning to be out for months instead of handing new baby to husband and going right back to work. Within days the fire chief gave me a suspension letter, started an internal investigation, sent me a termination letter, THEN got the results of the investigation, then scheduled a Disciplinary Hearing where they threw everything but the kitchen sink of accusations at me. Some were the doings of others, some were minor administrative misunderstandings, some weren’t my job, and some escalated into criminal allegations.

I think we counted over 175 “reasons” listed to support my termination. During pregnancy leave.

With that overwhelming theatrical display, no one knew which way was up and they upheld my termination.

BUT the timing of all this alone requires that the employer prove that the reasons were non-discriminatory… and through this whole process, they’ve never had to do that. There has been zero proof of anything, just a ton of new accusations every time the chief gets talking.

Firefighters are heroes. My lawyer says a jury trial would be filled with people who couldn’t separate this behavior from their special status. And that the 175+ accusations would be overwhelming and confusing.

My economic losses were in excess of 200k.
My emotional distress was calculated at 1x (200k).
The fire department’s opening offer was 2,500.
After a ton of talking, the mediator’s recommendation was 97,500. This insults me.

I want to take this to trial. Am I insane? What would you do if you were in my shoes, if your wife were in my shoes?

EDIT: the offer was 97,500, which would be 50k to me. I don’t need 50k now (though it wouldn’t hurt) but 50k for derailing my career, for destroying the last month of my pregnancy, for hearings and loss of health insurance with a new infant, for starting from scratch all over again. For four years of silence and being reviled by my town. All because the Chief was pissy and vengeful.

I’ve been diagnosed with hEDS since I was 16 but my Kaiser doctor didn’t assess me and just added it to my chart

I can’t sit more than an hour. I can’t stand more than 15-20. I need complete support rests before I can go again. Driving in a car longer than 40 min gives me a migraine. Just holding my head up for over 4 hours gives me a migraine. I have weakness and pain in ankles, knees, hips, lower back, shoulders, hands and neck.

I also have massive cognitive issues like losing time, disassociating, getting lost in multi step processes.

I am in finance. I can’t make mistakes, like ever.

My doctor will be extending my medical leave or putting together a plan to get me back to work. However I can’t fathom my work being cool accommodating all my true restrictions.

Is it possible to work? Doing what? Nothing with my brain or hands or body… what the heck else is there??