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What happened when my wife died

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Re: What happened when my wife died

#71

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…

I'm sorry it apparently rubbed you off the wrong way, but I really meant no judgment or claiming that reading this makes me feel better about myself because I take valuable lessons from it while somehow being dettached from the real consequences as you rightly point out. I ended up empathizing more peraphs because I have experienced some level of loss in my life both from family members and friends when I was very ve…

You have nothing to feel ashamed about or to apologize for. The person who replied to you at best appears to have misunderstood what you said.

Re: What happened when my wife died

#72
post #38
post #31

Earlier quoted context omitted.

Right there with you. We had a scare where my wife had to go to the hospital and stay at the emergency room for four days for stroke-like symptoms. She has many of the symptoms you've listed, and though her assigned emergency room doctor was unwilling to provide a diagnosis, it turns out that that thyroid medication has helped stabilize her condition. What's baffling is the lack of any sort of help at the hospital an…

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 anything.) Then, each professional is billed as a separate private contractor and our health insurance didn't cover service from a private contractor, so we paid around $8K out of pocket for service that used to be covered as part of child birth. (The benefit being that the hospital doesn't get bargained down by insurance providers if you get suckered into paying out of pocket.)

Re: What happened when my wife died

#73

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've written, the manifestations you have reported may or may not be caused by one or more autoimmune diseases, but the ones that tipically keep autoimmune/rheumatologic origin in consideration even when labs are negative are the partial spinal fusion and the arthritis [3][2].

> According to every test they run on her, there appears to be nothing wrong

Does it? We have:

- clinical picture strongly suggesting some rheumatologic disesease: inflammation and rapid onset arthritis are typical, but DVT, random bleeding may also be linked.

- radiographic evidence of spinal fusion.

And that's exactly how (eg) Ankylosing Spondylitis has been diagnosed classically (i.e. when MRI was not an option) [4]. More generally speaking, as the name suggests, the diagnosis of most Seronegative Spondyloarthropathies is based more on clinical than laboratory criteria [3]. For how I understand it, ideally AS would be diagnosed before spinal fusion happens, but when it's present and there isn't a more likely explanation AS would be at the top of the differential diagnosis.

Another thing that came to my mind when reading DVT, bleeding, vision loss was that these are more typically seen together in of some kind of vasculitides, hence why I mentioned above an the possibiity of multiple autoimmune diseases, but these could also be explained by anything altering Virchow's triad.

> There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding,

That sounds somewhat strange. While for temporary blindness, diverticulitis and DVT the cause may already be gone by the time the patient arrives at observation, at least for rapid onset arthritis, spinal fusion and random bleeding I think a diagnosis of the cause should be made.

The reason why rheumatologic diseases should be diagnosed is that if left untreated there will be periods of remission, when nothing happens, and periods of activity, when irreversible damage accumulates. Another reason to diagnose rheumatologic diseases is that they may themselves be manifestations of some other condition (e.g. rheumatologic paraneoplastic syndromes). We don't know if your wife actually has a disease, it may be not, but that's not a risk a doctor would leave to chance. It's just standard practice.

As I've already written I'm not a doctor, but if I may give you my advice anyway I would say your wife should go and see a rheumatologist.

> There's no one who either wants to or is qualified to look.

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

[1] [Coexistence of Axial Spondyloarthritis, Systemic Lupus Erythematosus, Sjögren’s Syndrome and Secondary Antiphospholipid Syndrome: Case Report](https://dergipark.org.tr/en/download/article-file/1615538)

[2] [Approaching the Patient with "Joint Pain" - CRASH! Medical Review Series ](https://www.youtube.com/watch?v=sfKWNeAywak&t=195s)

[3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377)

[4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995)

Re: What happened when my wife died

#74
post #31

Earlier quoted context omitted.

Right there with you. We had a scare where my wife had to go to the hospital and stay at the emergency room for four days for stroke-like symptoms. She has many of the symptoms you've listed, and though her assigned emergency room doctor was unwilling to provide a diagnosis, it turns out that that thyroid medication has helped stabilize her condition. What's baffling is the lack of any sort of help at the hospital an…

> What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn. I guess this depends on your situation. I've been in and out of doctors my entire life. The doctors that give a damn are generally locked away from you if you're using some sort of state health plan or HMO. I have only ever had luck finding a good doctor…

Thanks for the info, I'll see if we can switch to PPO, especially with open enrollment coming up next month. It could be the difference between life and death.

Re: What happened when my wife died

#75
post #43

My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someon…

the most important qualities are patience and forgiveness.

your friend is supporting his wife, and she shares her pain and grief with him, while he shares his pain and grief with you.

here is an interesting article that describes this support model as multiple rings around the person that is sick.

https://www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-...

your friends wife is at the center, your friend is the inner circle, next are his family and you. you are supporting those inside the circle, and you get help from outside the circle.

HN is the furthermost layer outside. maybe you have friends that you can turn to for your support, but if not, reaching out here on HN is the right direction. you are welcome to dump your pain here or in private to anyone who offers to listen.

i have been on that inner circle before, and on outer ones. feel free to reach out.

Re: What happened when my wife died

#76
post #43

My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someon…

It’s hard man. What you’re doing for him is good <3

Re: What happened when my wife died

#77
post #43

My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someon…

When my sister was sick the best thing we had was an entire church community helping us out - people taking turns babysitting, various people bringing food to us, people I barely knew and friends of people I barely knew offering help, people simply hanging out and being there for us, tons of people who had been thru similar things telling me I could call them at any time (I never did because I had trouble asking for help and acknowledging my emotions back then)

What I’m getting at is I’d assume the more of a community you can get around the situation, the better - and the greater the variety of needs that can be serviced (emotional or time-based) and the longer lasting that help can last. In a similar way to how constructing an org can be a lot more robust and capable than trying to solo a project

Sometimes just having someone(s) do some PM work to manage funeral arrangements, life insurance arrangements, closing down accounts, manage beneficiary distributions etc can be very helpful if motivation/discipline is hard or stressful to come by

Food for thought: after my sister and dad passed I had tons of people ask me how I was doing / “please you can talk to me anytime” and I’d say “I’m good” even though I was plagued with burnout, depression, anxiety for a few years etc. I’m in a much better spot now, but what I’m getting at is there can be a problem of that it may be near impossible to actually know how the person is doing, especially if they’re the type of person who doesn’t like sharing emotions or being a burden on others. Not exactly sure what you can do to fix it, just pointing it out

Re: What happened when my wife died

#78
post #58
post #43

My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someon…

(My partner died two months ago and I was left to care for a 20 month old toddler) If you're one of his primary support structures, you're already doing great. If you weren't, he'd have chosen someone else. Some situations just suck. Don't expect to be able to miraculously help your friend. Don't expect him to get better quickly. Perhaps he will, perhaps he won't. You're there for him, that's mostly all you can do. I…

I'm sorry for your loss. That really does suck.

Re: What happened when my wife died

#79
post #20

>If she does not understand or employ traditional feminine wiles that, offensive though it may be to admit, are necessary to getting along in a patriarchy? Is this really true in this day and age?

The idea that we live in a patriarchy is laughable to me, but as a woman myself, I'd say that yes, knowing how to interact with men as a woman — "feminine wiles" — is very useful. If not indispensable.

Re: What happened when my wife died

#80
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…

Yes! One thing that I found really neat was that there's a series of underground walkways between buildings on the campus, which is very nice because it gets cold in Rochester. The campus is also just very beautiful too. You're most likely going through something difficult if you find yourself there, and it feels special and nice rather than the experience of most hospitals where you can sometimes feel like a number…

The tunnels extend a bit beyond the campus--there are places you can stay and not have to go outside to get there.

Unfortunately, they never figured out my issues.

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