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What happened when my wife died

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Re: What happened when my wife died

#81

Post by coredog64 »

cfeduke wrote: post #72
speeder wrote: post #38

Earlier quoted context omitted.

My mom had a sudden acute glaucoma, we didn't knew it was glaucoma yet, and she was sent to hospital. Same shit, wealth extraction, no proper care. We begged help from her usual eye doctor, sent to him photos of her eyes that had obvious glaucoma for someone that know what glaucoma is, and he just replied she is fine. Eventually we found on our own she had glaucoma and transferred her to a university, where students…

Somewhat related here in the US - when we had our second child, it was touted that with health insurance the cost out of pocket with my insurance of having a child was less than USD$1,000. The medical care providers figured out a neat way around this: they have a bunch of professionals come to the room after your child is born and have you sign paperwork for the post-birth checkup. (What I learned: do not sign anythi…

I feel like there’s an legislative fix for this: If the doctor is on the premises and you allow them to see patients, they are “in network”. If the doctor doesn’t like it, they can bill the hospital separately.

Re: What happened when my wife died

#83

Post by rTX5CMRXIfFG »

elteto wrote: post #63
rTX5CMRXIfFG wrote: post #41

Earlier quoted context omitted.

I don’t mean to police you and you probably don’t mean harm, but what you said and how you said it is bound to rub someone off the wrong way in the future. In general, don’t tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering, because you benefit from their stories by making you wiser about life. It’s also presumptuous to…

Stop. This has got to be the worst attempt at gatekeeping I’ve seen. Now we are not even allowed to have empathy! Just absolutely ridiculous. You can absolutely empathize with people in more dire situations than you are. Why? Because we are perfectly capable of putting ourselves in other people’s shoes, because we can be compassionate, because we can be understanding, because we can _feel_. Btw, that world you live i…

Why don’t you tell me what the definition of empathy is, and then go back to the comment that I responded to and show me how it is logically impossible to interpret it as the commenter making the struggle about him/herself, considering all the I’s she used?

For someone who supposedly has empathy, you care very little about how your own words (or those whom you agree with) can be seen in a different light by the simple fact that you don’t know what other people are going through, and people use their own experiences to interpret the meanings of things. Considering how there’s acknowledgement ob my end that maybe the commenter didn’t mean any harm, you’re overacting like your most basic freedoms are being trampled upon, which they aren’t.

Re: What happened when my wife died

#84

Post by igetspam »

berdon wrote: post #40
igetspam wrote: post #19

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the ra…

You might consider going to the Mayo Clinic in Rochester, MN. It’s world renowned for diagnosis. My wife had various, random symptoms and all local doctors were either baffled or suggesting absurd things in desperation. In two days a doctor at Mayo correctly diagnosed the issue and offered suggestions on treatment that worked. The local doctors were both disbelieving and angry. Diagnosis was POTS (brought on by pregn…

I posted to be able to vent a little bit and have it be pseudo-anonymous. The conversation had gone stale, so I figured I would type that out and walk away.

We've tried to get into Mayo but they've rejected her because she needs to get into the general diagnostics are and they don't have room. We're going to try again through the spine center because if we can get in there, they can refer across.

Re: What happened when my wife died

#85

Post by igetspam »

ethotool wrote: post #29
igetspam wrote: post #19

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the ra…

Very sorry to hear that. Have they performed a CT scan or MRI? Have they ruled out MS? Some of the symptoms you mentioned might be caused by MS (Multiple Sclerosis).

Had another CT scan last Friday, at the ER. They couldn't tell her the cause for the reason she visited (extreme pain, abdominal swelling, fluid buildup) but they did find that blood clot, so that's a new and terrifying change. She's had a lot of CT scans and MRIs and this is the first time she's had DVT. Now she's on blood thinners, so she doesn't die in the next month or so. Unless she cuts her finger chopping vegetables (almost happened while I was typing this) and she bleeds out.

(I have new additions to the first aid kit, for this new problem.)

Re: What happened when my wife died

#87

Post by igetspam »

sniperjoe360 wrote: post #26
igetspam wrote: post #19

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the ra…

You can still do something about it, perhaps see a rheumatologist? That collection of symptoms seem to be right in their wheelhouse

Last week's ER visit included a bunch of extra blood samples for a rheumatologist. It's hard to get one to see you without a recommendation. The doctor at the ER, this time, is the first to make that recommendation.

Re: What happened when my wife died

#88

Post by igetspam »

spellcard199 wrote: post #73
igetspam wrote: post #19

I don't know how this is relevant to HN but it feels well timed, for me. My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the ra…

Hello. I'm just a (bad) med student and I'm not qualified to make any diagnosis, but I think the clinical picture you have reported warrants further investigations and I wanted to share my thoughts while I was reading your post. In the demographic of woman of child-bearing age the coexistence of more than one autoimmune diseases is not uncommon. Occasionally, there are even combinations of several of them [1]. As you…

AS has actually been a discussion. She has a number of indicators that are "AS adjacent," per the last rheumatologist we saw (which I forgot about, until now). It's the best diagnosis we have but the treatments he tried had severe adverse reactions and didn't show signs of improvement. Combine that with many of the tests showing up as "close but not quite" aligned with AS, he suggested we explore other avenues because he wasn't convinced of AS.

> If I were in you, at this point I would go to some known research center with maybe a university department or ward.

That's one of the reasons we moved to New England. We wanted to be close to Boston.

This is great information. Thank you. I plan to review everything.

Re: What happened when my wife died

#89

Post by berdon »

igetspam wrote: post #84
berdon wrote: post #40

Earlier quoted context omitted.

You might consider going to the Mayo Clinic in Rochester, MN. It’s world renowned for diagnosis. My wife had various, random symptoms and all local doctors were either baffled or suggesting absurd things in desperation. In two days a doctor at Mayo correctly diagnosed the issue and offered suggestions on treatment that worked. The local doctors were both disbelieving and angry. Diagnosis was POTS (brought on by pregn…

I posted to be able to vent a little bit and have it be pseudo-anonymous. The conversation had gone stale, so I figured I would type that out and walk away. We've tried to get into Mayo but they've rejected her because she needs to get into the general diagnostics are and they don't have room. We're going to try again through the spine center because if we can get in there, they can refer across.

I wish you success! Keep trying!

Re: What happened when my wife died

#90

Post by rTX5CMRXIfFG »

such12 wrote: post #70
rTX5CMRXIfFG wrote: post #55

Earlier quoted context omitted.

Considering how I gave my piece as kindly as possible and how yours is just a self-assured dismissal, I think it's you who should knock it off. :)

Your comment didn't come off as kind. At best it just seems like you misunderstood the comment you were replying to. You said: "...don't tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering." The person you replied to didn't do this.

Misunderstanding is unkind? Did I misunderstand unkindly?

As I said in the previous comment, I think that the people dying on a hill to defend OP are completely missing the fact that people understand others’ statements according to their own circumstances. This is an inevitable limitation of the subjective human experience, and this is why no one can ever make the position that nothing that they say is offensive—you simply don’t know what others have gone through which they are using to understand the things you say.

I really don’t see what’s so different with what I’m saying with, say, some misunderstood law or policy at work or business requirement because the writer thought of the wording differently than the reader. I pointed out that there’s no need to demonize the commenter, but somehow people feel the need to protect him lol.

Then again, maybe you guys have been incorrectly called out on Twitter, but that doesn’t make you right in the same way that I’m not necessarily in the right here.

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