COVID

Mmm.....Liz Truss will definitely make it worse.....

Mmm.....Liz Truss will definitely make it worse.....

I can't even imagine... one, or the other one, you lose. It's a matter of dealing with an ethnocentric fascist or an uppercrust who doesn't give a damn. Yoiks! 

Mmm.....Liz Truss will definitely make it worse.....

I'm terrified of either option.

And I agree in many ways it's the culture of the NHS that has developed after years of underfunding and staff shortages. I am frustrated with the state of things but not with any one individual or branch of the NHS. But if you look at the discredited PACE trial and the many authors of that who are now trying to paint long covid as psychosomatic, and the NIH keeps funding research in that direction, so we are in for a long wait before we catch up to the rest of the world on research and hopefully care.

The Daughter has been living with a set of conditions that Long Covid mimics, for most of her life. She says she just does not understand how people can take risks that could bring this on themselves. And the incredible frustrations they'll face trying to get help for it.

She also has a lengthy history with the medical system discrediting her - saying it's in her mind. Like the time they kept telling her she was "just fat" and just needed to lose weight, and was "attention seeking". Even though she'd been on a strict diet and her abdomen was enlarging.  It turned out that her spleen had the equivalent of four coke cans' worth of fluid in it (among other problems). And they'd been overdosing her on diabetes meds based on tests (A1C) that don't work if you don't have a functioning spleen.... Causing fainting and seizure-like episodes. That they initially tried to say were drugs.

Fat shaming is rampant in medicine. I could rant all day about that

Fat shaming is rampant in medicine. I could rant all day about that

I won’t mention that I know a gastroenterologist who only tells the stories of overweight patients!  I find it crude and unnecessary. 

I am not afraid to talk down one of the medics these days. I think the thing that pushed me over the edge was when the Daughter was in the hospital one time, with a port in her neck and wired to the machines and they had a glucose line in. She was in epic pain and could barely move.

Some ars***** doc who was apparently covering for someone else came in and started giving her a lecture on eating properly, because look at how high her glucose levels were. And who just mumbled and left the room when I pointed out she was on a straight glucose drip and had been for a couple of days, because she couldn't eat or drink.

I get really curt and abrupt these days, and no longer feel a need to apologize for it, when talking with people who should know how to do their jobs better than I know how to do their jobs.   (Yeah, I've got a bunch of letters I can put after my name, too.)

More light through the trees maybe?

After a week and a bit of being in the medical coma, my uncle is fully awake now and totally breathing on his own and maintaining sufficient oxygenation.

His dialysis has been reduced, so he's on a set schedule now instead of having to have it constantly.

He will be needing surgery for his heart and kidneys next week due to the damage they sustained, but is now well enough to withstand it. He had recovered enough that they were able to do all the tests they needed to do.

I think he's on some great drugs, because he is in super high spirits about everything.

My mom is with him, and the hospital (bless them!) moved him into a large room with a sofa bed for my mom, and a private bathroom. It's still a high care room, but not quite ICU anymore, which is great!

And the hospital is continuing to enforce their visitation policy for certain people, so another weight off our minds for the time being.

Brilliant news Aquila!

Okay, light hearted, when I started this thread 2.5 years ago, I put it in Chit Chat.  Oh the irony.  Chit Chat.

Hah, I distinctly remember having a conversation in Dec 2019 with someone who had said, "2019 was such a rotten year. Bring on 2020. Couldn't possibly be worse."

Oh my sweet summer child.

I've just completed the form for my doctor about my cough that JUST WON'T SHIFT.

@KFdancer how are YOU doing?!

Fat shaming is rampant in medicine. I could rant all day about that

Yeah, it totally is. Add in the historical neglect that women have faced, and boom! It can be an awful scenario.

I consider myself extremely lucky in that the clinical lead at my Long Covid clinic is also a specialist in ME/CFS. She has been absolutely adamant that I ignore the naysayers who insist my symptoms are just due to anxiety, and has probably prevented me from gaslighting myself at times when I started to even doubt myself.

But I know others with ME/CFS and/or Long Covid have not been so lucky. One thing I emphasized repeatedly during the consultations to create a Long Covid diagnostic/treatment tool is that medical professionals must have education about the condition, and patients must feel seen and heard. They have to genuinely feel that their symptoms are being recognized and taken seriously. That kind of disdain (due to your weight, due to your sex, due to anxiety, and so on) is why some people I know haven't even gone to their GP due to fear of not being taken seriously and damaging their relationship with their doctor.

There are anecdotal stories everywhere about people who were fobbed off by doctors (not necessarily in the UK, but in the US too) because it was presumed weight was the issue. And by the time the real issue was identified, some of the harm/damage was irreversible, or it was too late for treatment. Or heck, even more basic than that, it was more unnecessary time the person had to suffer. Tragic.

Well, while I definitely have felt like the inhalers have allowed better breathing (deeper breaths), the cough has continued to get worse by the day.  I went back to the doctors and had a chest x-ray.  Pneumonia in the right lung.  More tests now to determine if just pneumonia or Covid pneumonia.  But I have big gun antibiotics and the doctor said I should feel like a new woman in a matter of days.  Let’s hope this is really the fix!

I also learned to stop saying I don’t have a fever when I haven’t actually taken my temperature…. Not sure how long I’ve had THAT for. 

It’s been a crappy two months but I think I’m getting somewhere….  Hopefully back to my old self.  I liked her. 

Well, while I definitely have felt like the inhalers have allowed better breathing (deeper breaths), the cough has continued to get worse by the day.  I went back to the doctors and had a chest x-ray.  Pneumonia in the right lung.  More tests now to determine if just pneumonia or Covid pneumonia.  But I have big gun antibiotics and the doctor said I should feel like a new woman in a matter of days.  Let’s hope this is really the fix!

I also learned to stop saying I don’t have a fever when I haven’t actually taken my temperature…. Not sure how long I’ve had THAT for. 

It’s been a crappy two months but I think I’m getting somewhere….  Hopefully back to my old self.  I liked her. 

Oh yuck, that sounds horrible. Our daughter caught pneumonia a few years ago (2018 or 19). Came out of nowhere, but she was really sick with it for awhile. Antibiotics did the trick for her but it took awhile.

Hope you start to feel better soon.

I had it in December 2019 and truly was MUCH more ill than I am now.  But I’ve been progressively becoming more and more ill, which is why I keep calling the doctor.   

Hopefully this is the end of this mess.  Fingers crossed it doesn’t just reveal something else!