How are adults who are only qualified for unskilled labor supposed to support themselves if they aren’t paid a living wage?

I'm hearing of this, too. I wonder what it is?

Most people with long Covid have normal labs also (unless their iron is off), unless they are part of a study where they are looking at something that you can’t usually get tests for. In that case, they have found multiple biological markers, but, you can’t just order any of those outside of studies. Since you have a long wait now before the next appointment with someone, would you consider a short trial of OTC antihistamines to see if they give any symptom improvement? Besides possibly helping her feel better, that could be somewhat helpful diagnostically if they do help.

This is often a result when doctors don’t know. Many would rather decide there’s nothing actually wrong (or their favorite with women—it’s “anxiety”) than to admit they just don’t know what it is. I like prairiewindmomma’s wording for responding to that. Heartrate still being wacky? Is she finding hydration and salt to be helpful? Compression garments can help as well, but might be a harder sell.

Can you rent or borrow a Havahart trap to put near your house with some food?

I discovered they make some clear meal replacement drinks and having a little of that helped a lot. I diluted it because it was too sweet. I do poorly without food as well. Not sure if it’s too late now to get any.

That’s what I would do too in that case. When Pfizer and Moderna are the only choices, I pick Moderna except for teen to young adult boys who get Pfizer.

I was thinking about you in the night and wondering how you would manage if it hadn’t passed by the time you needed to travel. I had the thought to wonder if you could take an AZO to numb things a bit? Would that be contraindicated for any reason? I’m hoping you’re at least in the stage where it has left your kidney and made it to your bladder. Bladder to out is a lot more manageable. I hope you have good, comfortable travels and can enjoy taking delivery of your car!

If you can manage to get a Novavax, that’s what’s I’d do. Have you had much in the way of side effects with the Pfizer or Moderna? If so, that might be a reason you could give. Far and away, most people I know who had an unpleasant time with previous shots had little to no reaction after getting Novavax (including myself). It has also shown longer durability than the others.

I assume you’re drinking ridiculous amounts of water? I hope it passes any time now!

I’m so glad you have found a regimen that is helping and keeping things stable. I think you have done great throughout this being flexible and keeping your focus on whatever it is your dd needs to be doing and feeling her best, even when that may not be what you had in mind as ideal initially. I hope she continues to do well and that the ERP adds a tool that might mean she needs fewer medication increases than she otherwise might have.

Oh, knowing this, HRT might be one of the first things I’d try if it’s not contraindicated for you. You might just need a little more estrogen to get through this time period. The newer research on HRT has me feeling differently about it. Otherwise, I agree with Katy about doing a very specific, targeted kind of therapy such as CBT, ACT or DBT. I wouldn’t expect just random talk therapy to be hugely helpful, though some people do appreciate being able to vent.

I get this too, except it’s always, “Mama?” In a loud whisper that sounds like one of my kids. Then I have to get up and check on each of them.

I get the knocking thing. It has a name. Sometimes it's a doorbell and sometimes it's knocking, but it wakes me right up and it takes me a short while to realize it didn't actually happen but was the sleep thing. I've never actually found myself out of bed because of it though. I would be disconcerted as well.

So frustrating when you can’t get anything to show up on tests to point in a clear direction. When is the cardiologist?

That's good. What you're saying, including the MCAS, sounds post viral to me, and of course it makes my brain go to post covid, but I know you have some other viral history. Whatever the case, I wish it didn't sound post viral to me :(. I hope it all resolves to your previous baseline soon. The lack of further anaphylaxis is a good sign at least.

Can you be active and do your usual level of activity and still feel the same in the next day or two, or is your activity level highly affected? My answer would depend on that.

Do you have testing that shows more than two standard deviations between his processing speed and his scores on other submeasures? That may be helpful.

What @Spryte said 👍.

I was just looking at this more, and besides the fact that this one was based on a survey (and only 1/3 responded, calling selection bias clearly into question), this was an interesting quote from one of the researchers: I thought it was interesting that he acknowledges the results are going to look better if people who already have long covid are included. I'm very interested to see the results from the trials testing longer courses of paxlovid in long covid. It's not that I think paxlovid is a wonder drug and everyone should have it, it's just that there's nothing else out there being offered for reducing long covid risk and/or prevention of worsening in those who already have it. When it's the only option in a desperate situation, well, it's the only option.

Thanks for posting. I'm still trying to parse the different possible meanings of the addition of "through day 28" to the primary outcome. I thought maybe it was to eliminate any potential effect from rebound, but then saw they did include rebound. All I can think is it's something to do with separating acute symptom resolution from onset of long covid symptoms, as there is very frequently time period between people feeling like they recovered from covid and when they start having post acute covid symptoms. I don't know that I agree with his logic about placebo side effects. He says they should be set at 0% in order to not cover up any effects from the intervention, but if 24% of people in the placebo group reported side effects, that makes sense to be the baseline to compare against, because you would expect a similar amount of people in BOTH groups to report various adverse effects that aren't actually due to the drug at all. I don't know why it would be that everything counts in the drug group, but nothing counts in the control group. It's like with vaccine studies--it's entirely relevant to see how many people who received placebo reported adverse events, otherwise a vaccine looks much more dangerous than it is. I'm glad he at least addressed long covid here, though it sounds like he's unaware that there are multiple studies of paxlovid for long covid being run. Or that several have already been run that found benefit. I'm aware of a couple that found a significant benefit and one that found no difference. Notably, the one that found no difference also found that Paxlovid had a higher incidence of rebound, which I think most agree now is not the case, which calls that study's results into question anyway. I think the jury is still out on that one, but still maintain that there is enough data to at least offer it to those already suffering long covid if they are infected. Metformin had stronger results than Paxlovid for long covid reduction, but that's a harder one to get prescribed for someone who doesn't usually take it. I also disagree with his conclusion that there's no reason to test to determine if it's covid. I know part of this is a difference with publicly funded medicine. For people who end up with long covid symptoms though (which is a significant number), a documented history of a positive test is often important for receiving treatment. I think he just doesn't think this disease is much different from the flu at this point, and I think that's an emergency medicine bias.

I can believe those things happened and shouldn’t have. I’m biting my tongue hard on this one though, to be honest. Without bringing up specific details, I expressed strong concern in your original thread about this when it first happened and then down the line those concerns came true which was very, very sad. Which is why I’m surprised to hear you saying these things. I’m glad things at least ended up okay in the end.

Edited to just say there are really good reasons for that.

This is adorable 🥰

This does make it much harder if she is opposed. I would take that into consideration at this point, while also being aware you might need it for services at some point. I never in a million years thought my kids would need any special services when they were that age, but things got much more difficult in young adulthood and the diagnoses were necessary for certain things. I’d be inclined to get on a waitlist somewhere, prior to high school at least, and then you have an appointment if needed.