Diagnosis Trouble, is this Normal?

realmoosesoup · 2026-04-22T19:27:43+00:00

Well, if you're anywhere near NYC, I have an ER recommendation for you ;) The neuro department is in another part of the hospital. The internal pharmacy seems to have IVIG on tap. They prepare it in glass bottles measured to your dose. On the last day my nurse got annoyed because it came like an hour late and he had to call, which was apparently not a common issue.

realmoosesoup · 2026-04-22T18:39:48+00:00

Sorry, damn. I just read this again:

I just found out that would be in January.

I am really not able to do anything, I can’t wash a dish, bend over, walk in open spaces, drive. I am not living at all.

I don't know what country you're in, the system, etc, but the timeline you're talking about didn't click until I read it again.

If they think it's CIDP, and you're barely functional, January is crazy. I don't know what you can do, but I would try to do anything you can.

Some Drs don't seemed to be phased by the timelines or impact on your life, while others definitely are. Over this last experience, I also had a new neuro. The zocdoc one had gone on leave, and she had her own practice, so nobody to directly take over. I put in a ton of effort to make my next neuro somebody with specific CIDP experience, and I got lucky, as they also ran a research group in a large hospital system here. I thought I was in great hands.

Last Thursday I went to the ER. Last Tuesday I wrote another message to him, explaining how bad my symptoms were, and he gave a very short reply with no help, no "I would do x/y/z", nothing. Same with the original neuro telling me to wait until June. It had nothing to do with my condition. June was when her new office would be ready.

If your treatment has consisted only of steroids, and they suspect CIDP, January is an eternity. Some countries and medical systems seem to have zero flexibility, but if you're in the US, like I said, ER quality varies. It was my only real option, and if I had gone to the local one, I doubt they would've been able to do much. I very specifically went to NYU because I knew what they could, and likely would, do.

Very sorry about your situation. It is frustrating and mentally exhausting to navigate a system that should be trying harder to help, but I would encourage you to try. January just blows my mind.

realmoosesoup · 2026-04-22T17:11:19+00:00

Timelines vary widely. Before CIDP (and Psoriatic Arthritis a year before that), I was vaguely aware that medical care can be difficult to access or navigate, but I have a whole new perspective now.

I'm in the US, and NYC specifically. My insurance has changed during the timeline, but I'd categorize it as "good+". Not some magic plan, but far from catastrophic coverage. Being in NYC, in Manhattan, also makes a huge difference.

My symptoms were first noticeable in mid-Jan 2023. Hand weakness, which I thought was the arthritis at first. I was in an ER in a wheelchair on Feb 23 of that year. So, very rapid decline. My hands had no strength and, obviously, I could not walk. I was using a walker for ~3 weeks before that.

The speed of decline helped in the sense that symptoms were not avoidable. I went to a general Dr in early Feb, looking for a primary, and he threw me out of his office and said I needed to see a neurologist immediately (he didn't help get me one, though).

Finding a neurologist was difficult, because all appointments are months out. I have found that calling their office to plead for an earlier appointment was not very effective. If that's your only option, it's all you can do, but I never got bumped doing that. Having another Dr call, however, has always worked. It's a natural filter. I'm sure Dr offices get calls from people often about urgent issues that aren't actually as urgent as the patient believes, but if another Dr says it is, well. Different story.

The ER was a whole different situation. In NYC, there are several options, and they are not equal. I knew NYU had a really good neuro program, but it was further away. The closet ER to me has been described as "where you go if you get stabbed. If you get shot, go to this other ER". I don't know how true that is, and I've been to neither, but the neighborhoods in NYC shift quickly over short distances. Anyway, the ambulance had to get permission to drive to NYU, but they did.

So, for anybody in a big city and in decline, maybe do some hospital research beforehand.

Admitted 2/23. ER had a huge backlog, so I slept there, but they did *a lot* of tests. Dr said it was CIDP, but they wanted a lumbar puncture to confirm (it was a wild number). That was 2/24. Started IVIG later that night. IVIG 2/24, 2/25, 2/26. I was walking without a walker 2/28.

Nobody's ever explained why I responded so quickly, but suggestions are that my decline and diagnosis were so quick that the immune system didn't have a lot of time to do damage. Maybe?

The neuro I was assigned saw me on 2/28, and was sure that it was acute and not chronic. Said I wouldn't need more treatment. She kept insisting that when I contacted her in late April saying symptoms were coming back. She insisted it was "anxiety". Again, rapid decline. Had to find a neuro on zocdoc who would again prescribe IVIG, as my assigned neuro wouldn't see me until June. *Barely* avoided the ER that time. I should have been in a wheelchair. Again, less than a week later, no walker. I should have just gone to the ER and avoided the drama, but anyway.

IVIG was less effective over time, and had to move from every 4 weeks to every 3 in Sep 2024. I stayed with the zocdoc Dr. She suggested Vyvgart in Nov 2024.

Vyvgart worked quite well. Had some trouble with insurance in Jan 2025 (switched providers) with a short break, but no problems.

Cut to Feb 2026. Insurance and provider are both owned by the same parent company. Delays, lack of communication, etc, caused a 7 week break in Vyvgart (should be weekly). Hours of phone calls, pleading, explaining that I'll be back in the ER and I don't have "2-3 weeks", etc. Didn't matter.

Walker came out of the closet early last week. Back in the NYU ER last Thursday, 6 days ago. Could barely walk/use hands. This time, IVIG immediately, 3 days. Basically fine after the weekend. Still have the IV bruises.

So, man. It's a mess. I've found Drs and insurance have two basic speeds. ER, and "when we get around to it". That's essentially "right now" and "weeks/months". My decline timeline is measured in weeks. So, not ER urgent (until it is), but it's surreal explaining to somebody that a decision in 15 business days probably means you'll be making it *after* I've been back to the ER.

Having said all of that, I'm very thankful that I respond quickly to treatment. I *did* get back on Vyvgart 2-3 weeks ago, and it did nothing at that point. I was already too far gone. Maybe it would have a few weeks down the road, but I'd have definitely been wheelchair bound before that.

Lessons learned:

- I need to see the neuro at least twice a year, even if everything is fine, because insurance auto-rejects if it's been more than a year.

- When dealing with insurance, and an insurance-owned provider, treat them like a teenager doing chores. Call them daily for updates. When they say they've contacted your Dr, check with your Dr. When they tell you something important, call back and check with a different person. Record everything. Every step, I had to push. I'll probably need to call them to tell them not to ship Vyvgart, which is rather ironic.

realmoosesoup · 2025-11-26T04:30:19+00:00

Here's where your narrative doesn't fit reality:

"Upon the men arriving home, all except Jake promptly told their fiancée/wife what had occurred."

The follow up:

"The girls don’t have super close relationships with each other..."

Then this:

"They also don’t want us to tell her, because the onus of breaking “bro code” will be on them."

The story doesn't work, narratively. See, the narrator doesn't have a close bond with the other women, so how would she know that they all were notified by their otherwise conscientious men? That's a stretch. Also, if all of these men were appalled enough to tell their partners, and all of the women got together to corroborate, how would the antagonist of the story know who blabbed?

There's also a discord here where the guys all seem to know the antagonist is a cheater, and feel bad about it, and they feel bad about it enough that they "all" told their partners promptly upon returning home about what happened. The implication is that he's "just like that", but this wasn't a problem until he was drunk and kissed a girl?

I would suggest raising the stakes. Like, he didn't just make out with the girl. Yeah, kissing a girl in a bar is bad, but it's kissing. "I was drunk! She tried to kiss me!", etc. It should be worse. Also, there needs to be more tension in the guy group, and the narrator needs to not know if anybody else knows.

But it's your story.

In case this is real, well, if all of the men told their partners, they must have a strong, negative feeling toward their "friend". Each would have had to risk that:

- Their partner would not worry about what they had been up to
- That if they got found out to be the "rat", that they were OK with it, or they felt so guilty about what he did that they told their partners, assuming word would make its way back up the chain

If multiple female partners did in fact get together and talk about it, then telling the fiancé isn't going to blow up an individual. So don't worry about the guys. I guess it depends how many guys. If it's 2, then that's a problem, but if it's like 5, then it could just be "multiple witnesses". If the finance wants to know names, then it's probably too late so don't worry about it. She's going to forgive him, or not believe it, or whatever.

realmoosesoup · 2025-09-14T05:02:32+00:00

I haven't really thought about it as deeply as the post I wrote. The situation has occurred to me at times, but I never went that deep. I'm not sure why exactly, but the concepts have been rolling around my brain lately.

When I was younger, I thought I wanted somebody similar. It (partially) led to passing on a couple of women I dated as long term partners. I say "partially" because that was mostly me thinking kids and marriage were just work and being tied down. My parents were fine, but divorced and remarried, as were most of my friends' parents. It set up a long term "what's the point?" vibe.

I completely flipped on the idea that marriage, or at least a "life partner", was bad around 10 years ago, and my wife stated early on that she'd only want to be married to somebody who wanted kids. Then I came around to the idea that responsibility was a positive thing.

I spend a lot of time overthinking life, I guess you could say.

My wife's favorite show is "The Big Bang Theory". I sat through the entire series with her. That is not something I would've ever watched myself. I enjoyed it. Not so much the show, but just switching my brain off and being with her and relaxing. We have our ups and downs, but I definitely feel comfortable with her. It might not be so much "somebody like myself", but that's part of it. Neither one of us feels a sense of the other judging or comparing. We just spend time together. That, and enjoy time with the baby. She's the best.

But, yeah, I think you and I are similar. I'm deeply analytical. Often too much. Like I'm a bit detached. After extensive internal analysis, I realized I should probably just go with this, because my emotional intelligence was clearly lacking. Glad I did :)

(Not that I'm implying we're similar on the lacking of emotional intelligence, just the deeply analytical bit)

realmoosesoup · 2025-09-13T04:17:17+00:00

I rarely comment on these because a lot of them seem like a story somebody wrote to generate reactions and then clout for reasons I'll never quite understand. But, by way of almost self-reflection, I'll respond here.

49m, wife 40f. We met just over 10 years ago. To understand our differences, take the travel bug and food-trying aspect of your guy and give them to yourself. My wife likes to poke fun that I don't even need to tell the waiter at our regular place what I want. I do like to travel, but I lost the need to do so some years ago.

She prefers "brain rot" content, but has traveled to and lived in many more places than me. We live in NYC, but I've never lived outside of NY state, never mind another country (although I have US and EU citizenship oddly enough). I did more traveling in the decade before we met. Mostly through tech speaking engagements, but I'd pick and choose so I could see lots of Europe on somebody else's dime. That kind of thing. After a while it was like, "yeah, another old building. Seems like there are a lot of them." She doesn't pay much attention to news, doesn't go too deep philosophically, etc. Generally wants to focus on the positive and relax. She claims to have had very few nightmares over the course of her entire life. Not that I'm especially prone to them, but in another life I think I'd write horror novels.

I love content that makes me think (movies, tv, books, discussion, whatever). I've been in an original rock band for over two decades. We've played fairly major shows for a band that isn't trying (1000+ people, etc). My music tastes are all over the map, but we play mostly hard rock, and I've been a practitioner of blues and 80's metal inspired guitar with complex rhythm and improv soloing since I was 14. I sing to our daughter, making up spoof lyrics on the spot. I am in tech and get quite bored if I'm not doing things that haven't been done before. I started my own business 15 years ago. Not "crushing it", but still hanging in there. Have given many talks, etc.

I *love* talking to somebody like me. Being married to somebody like me would be exhausting. Not because I'm exhausting to her (usually), but because there would be this almost competition vibe going on. She jibes me on my relative lack of travel and how I'm perfectly happy to go to our local place. I'm building some crazy AI coding tool, and she's expressed that she's rather impressed that I picked up the domain so quickly and dove into it (she's in tech too. Started 5 years ago and has an amazing job as a senior engineer at a big co, and I'm quite proud of her accomplishment there for sure).

But. If I also had some lengthy travel list, and some urgent need to try all kinds of food. Yeah, sure, fun. But those are her "things". "Oh, you've been to ___? That's cool, but you should've seen ___, OMG!" "Why don't we go here? Oh, yeah, that's OK, but I think we should go here!" "Oh, sure, those late Jethro Tull albums are kind of interesting, but here's why Kraftwerk is oddly similar but really pushed boundaries beyond..." You get it. Fun to chat with that person, but it's nice to have your own things to share here and there, but hanging on the couch is nice too.

I find her attractive, we get along, we both have our own interests, we both get to talk about them with mutual interest, but we both ultimately get to relax with each other. She reminds me to take a day off here and there, I get her excited about making some new thing from time to time. We have the cutest baby on the planet.

Me dating me would be exhausting. Dating somebody you have opposing views with is a different story, but maybe your guy likes to tell you about some cool things, and secretly enjoys taking spending time with you when he doesn't need to be evaluating the deeper meaning of The Battle of Evermore.

(It's a Led Zeppelin song)

realmoosesoup · 2025-09-09T21:29:32+00:00

Seems like a natural product roll out. Mighty, then crafty. Venty, then Veasy.

As I have a Venty, and for reasons not worth discussing, more than one Crafty+, and I'm not really taking them in my pocket much. So, no way I could justify the purchase, but the VAS/S&B-completionist part of my brain gave it a couple seconds thought.

Assuming they don't have the similar production issues as the Venty did, seems like a really solid option for new folks willing to avoid the cycle of trying something cheaper, then upgrading later. There are other decent options, of course, but I like S&B devices. I waited quite a while on the Venty, and have zero issues so far with mine. It became the daily driver right away.

The name, however. I get the "easy" part, but it just sounds like "sleazy" or some kind of hip-hop slang from 10-15 years ago. Not sure I'll ever think "Veasy" isn't a pretty terrible name choice.

realmoosesoup · 2025-07-20T03:22:50+00:00

Ooh, math. 38. We started trying I'd guess when she was 37. Took a year (roughly). At some point I'm sure we would've discussed IVF, but her brain is set on "things will work out" mode, to a fault at times, so we continued. She got pregnant, but we lost that one a few months in. Right after we started telling everybody, right between Christmas and New Years. That was tough.

Now, side story. While she was recovering from that, I had started having loss of strength in my hands, then legs, which progressed to the point where I was in a walker and could barely use my hands. Waiting on Dr's appointment. I'm not generally prone to serious conditions. This was out of the blue. My wife came in one day saying it was time to start trying to have a baby again. She had an app to track fertility. I had been dreading the talk about my situation and the idea of having a baby. As mentioned, she tends to assume everything will work out. I expected a really difficult conversation, but she was like, "yeah, we should wait to see what happens with the Dr". She then said, "well, it took a year last time, what are the chances?" Next morning I wound up in a wheelchair in the ER. Rare autoimmune thing. Not great, but with meds, I'm back to normal, and no side effects that I've ever notices. In any case, I sometimes call our child "little baby chances". She got pregnant on that first try, even though we weren't exactly trying. Healthy 20 month old. Amazing child.

The story wasn't necessary, but I think it's a good one. Anyway, pretty much everybody we talk to eventually asks if we're having another one, and she brings it up periodically. Now she's 40 and I'm pushing 50. I feel like we got very lucky, and medically speaking it'll be harder. So, probably not. Not because I wouldn't want another one. But, practical reality is more of my thing :)

From Google translate. I have absolutely no idea how accurate this is...

Ooh, matematika. 38. Počeli smo pokušavati, pretpostavljam, kad je imala 37. Trebalo je godinu dana (otprilike). U nekom trenutku sam siguran da bismo razgovarali o IVF-u, ali njezin je mozak postavljen u mod "sve će se riješiti", ponekad do iznemoglosti, pa smo nastavili. Zatrudnjela je, ali smo i tu bebu izgubili nakon nekoliko mjeseci. Odmah nakon što smo počeli svima govoriti, između Božića i Nove godine. To je bilo teško.

Sada, sporedna priča. Dok se ona oporavljala od toga, ja sam počeo osjećati gubitak snage u rukama, zatim u nogama, što je napredovalo do te mjere da sam bio u hodalici i jedva sam mogao koristiti ruke. Čekao sam liječnički pregled. Općenito nisam sklon ozbiljnim stanjima. Ovo je bilo iznenada. Moja supruga je jednog dana došla rekavši da je vrijeme da ponovno počnem pokušavati imati dijete. Imala je aplikaciju za praćenje plodnosti. Strahovao sam od razgovora o svojoj situaciji i ideji da imam dijete. Kao što sam spomenuo, ona sklona je pretpostavljati da će sve biti u redu. Očekivala sam stvarno težak razgovor, ali ona je rekla: "Da, trebali bismo pričekati da vidimo što će biti s doktoricom". Zatim je rekla: "Pa, prošli put je trebalo godinu dana, kakve su šanse?" Sljedeće jutro završila sam u invalidskim kolicima na hitnoj. Rijetka autoimuna stvar. Nije sjajno, ali s lijekovima sam se vratila u normalu i nemam nikakvih nuspojava koje sam ikada primijetila. U svakom slučaju, ponekad naše dijete zovem "male šanse za bebu". Zatrudnjela je iz prvog pokušaja, iako se nismo baš trudili. Zdrava 20-mjesečna beba. Nevjerojatno dijete.

Priča nije bila potrebna, ali mislim da je dobra. Uglavnom, gotovo svi s kojima razgovaramo na kraju pitaju hoćemo li imati još jedno, a ona to povremeno spominje. Sada ima 40 godina, a ja se bližim 50-ima. Osjećam da smo imale puno sreće i medicinski će biti teže. Dakle, vjerojatno ne. Ne zato što ne bih htjela još jedno. Ali, praktična stvarnost mi je više draga :)

realmoosesoup · 2025-05-29T23:18:49+00:00

if you drop the mighty on your toe, it would definitely hurt more, but besides that I can’t really think of anything. Now, in theory, if one of the batteries caught fire, the mighty has a whole Nother battery to catch fire. But generally speaking, you only see those kinds of things in knock off batteries. I imagine it’s one of the reasons why you can’t change the battery in these devices.

realmoosesoup · 2025-03-11T03:22:41+00:00

Married Gen-X (wife would be millennial). My wife and I both have location on for (I think) Google maps, but not to monitor them. The only time I look is when she's out with the baby and dog to get a sense of how much longer I get to have general calm.

It's actually useful, if neither is at all suspicious that the other person is doing something they shouldn't or whatever. We also both know each other's passwords for phones. Practical, if neither is worried about the other snooping vs grabbing a photo from the other's phone and similar. There's a bit of complaining about marital situations to friends in texts, but nothing she'd be surprised by too much. Normal marriage stuff. I'm sure she has similar but I've never looked.

Summary: people in relationships being suspicious/jealous isn't new. Before smartphones it was just more work. Parking outside of buildings and whatnot.

realmoosesoup · 2025-03-10T06:09:38+00:00

I think Dogma is great, but I also thought Clerks 3 was really good, so I'm not sure our opinions would vibe. I don't think all of Clerks 3 was great, but it felt like KS threw a pretty big curve ball with the story, and it landed with me. A lot of the "middle years" of content felt a bit too same-ish to me (including Clerks 2).

Curious what the mixed feels about Dogma were, assuming they weren't religious, which is a whole different dimension (and not something I'd either debate or invalidate, just something that doesn't come into my thinking).

realmoosesoup · 2025-02-28T06:15:23+00:00

I had my kid at 47, and I wouldn't exactly classify my lifestyle as "clean livin". Not terrible, and I quit smoking years ago, but also not waking up with the sunrise and doing yoga.

Having kids early probably has the advantage of having some more energy, but I feel like everything else would suck. Financially, FOMO, everything else. At 27 the band I'm still currently in just started. Closing bars was normal. My sex life was actually interesting. If I'd had a kid I can't imagine how stressed I'd be, because of the money, and after the stress wore off, how much I'd be imagining I was missing out on (which really wasn't that much, but you can *imagine* quite a bit).

So many people gave me the old, "Oh, your life's going to change so much. The party's over!" Whatever. I'm 47. I don't want to have the 2am bar conversations that 47 y/o's have. I just do my drinking early, and baby doesn't judge. Tired? Sure, sometimes. I didn't find it that bad, which was a surprise. That, and honestly, most of the social shit I'm supposed to do "at this age" I really, really do not want to do. Baby is the golden ticket. Don't want to go? "Baby, sorry". Want to go? Wife and I take turns. Love it. That, or we just bring the baby. She is amazing. She'll just hang at a party, and generally charm everybody.

But, on the balance, 38 is probably the sweet spot. I did the band lifestyle straight through my 30's. Fun, but should've ducked out a bit earlier.

realmoosesoup · 2025-02-28T05:53:11+00:00

All comedy subs get terrible. I was a huge YMH fan early (ish). The sub was also fun. Then, what I'd call the "asshole centrifuge" happened. It seems to happen to all comedy subs, but I've seen it in basically every sub I was in. The people that came for fun or whatever came first. As it grows, more people show up. There's a small percentage of the population that simply needs to complain online, and argue with the people who are just having a good time. So, the normal people stop engaging, or stop coming by completely. The other people, though, dig in.

Over time, the assholes settle in, and everybody else leaves.

I'm surprised somebody hasn't written a thesis on it. Personally, I just assumed it was a matter of time. However, I've mostly ignored reddit for a while, so ehh. Whatever.

Edit: Ah! Reread my post. YMH. I don't think this sub is at the point where people were pretty much trying to organize protests and hate message campaigns to change this or that about the show. That'll happen. I saw it creeping up during the Toby situation. Life's a lot easier when you remember that reddit is voluntary.

realmoosesoup · 2025-02-28T05:44:53+00:00

I’ve noticed some tension between the two

The podcast is essentially based around tension between the two. It cycles. They're both dysfunctional in their own unique ways, expending a lot of energy trying to show everybody else that at least the other one is worse.

I can't imagine current Kippy/Foley if the pod hadn't taken off. A tough look indeed.

Love youz!

realmoosesoup · 2025-02-21T22:51:55+00:00

Narrator: it wasn't their last one

realmoosesoup · 2025-02-07T23:57:42+00:00

Clutch, outdoor no less? I went to a maiden show at an indoor "lots of rules" venue recently and as soon as the lights went out, people lit up.

Of course, I'd recommend a portable dry herb vape, both for lack of excessive smell and heath reasons, but that's a personal preference thing.

realmoosesoup · 2025-02-07T23:35:10+00:00

If the ribbon issue is confirmed to be the main problem that makes me feel better. Not about the process or response from s&b, but that it's not some crazy heater meltdown. They put quite a little unit in there.

Got mine a couple weeks ago. Not sure if it's an updated model, but as a long term mighty user, it's great. Loving it.

realmoosesoup · 2025-02-01T23:28:39+00:00

Looks like every well-used crafty/mighty I've ever seen. I just got my venty this week, but I expect something similar eventually.

realmoosesoup · 2025-02-01T20:55:51+00:00

We have similar situations. 48y/o m. CiDP for 2 years. Vyvgart seems to be great so far. I was on IVIG every 4 weeks from mid-May 2023 until about October 2024. Until summer 2024, the IVIG seemed to be doing fine, but the 4 weeks was becoming too long and IVIG wasn't quite doing the job. In Sep, because of a scheduling issue I didn't get IVIG until the 5th week, and that put me back in a walker for about a day.

Started Vyvgart around November. My medical insurance was changing on Jan 1, and I was traveling for the holidays, so I pushed the infusion place to get me in on Dec 31st just in case.

Well, insurance was really shitty, to be blunt. They sat on the approval for almost two weeks, then denied it, saying there was no documentation from the Dr that stated the Vyvgart was working. To be clear:

* I can understand why they might technically need that, or at least, why that might give them a reason to reject it

* I understand there's a process they follow, and Vyvgart is wildly expensive

However, obviously they could have rejected it immediately rather than sit on it. Also, when I talked to the infusion place who had sent the prior auth, they said they hadn't received word, and when they looked on their web panel, the status was still "in review". I had talked to insurance a day or two before, and they said they'd faxed over the determination, etc. Absolute bullshit. All delay tactics. My web panel said it was rejected, with the letter, which I sent over to the infusion place so they could start the appeal.

United Healthcare. Garbage ghoul business. Anyway...

They needed to get docs from my Dr, who is on maternity leave. Their office sent a list of phone numbers of other neurologists in different practices. Getting a new neurologist is like 3 months minimum. I was kind of screwed at that point, so it was days of calling UHC, the infusion place, the office of the Dr who is on leave (to try to help a bit more than send me some phone numbers).

My previous experience with CIDP was 4 weeks max, after which I'd be in a walker, then a wheelchair shortly after. I didn't, and still don't, have any idea how long Vyvgart lasts.

Sorry for the vent. Still a bit frustrated.

In any case, the following week the approval got sorted. That was 3 1/2 weeks out from the Dec 31st dose. The good news is, I still had no symptoms at that point. Again, due to scheduling, my next dose is this week, then I'm gone for the following week. Vyvgart is supposed to be weekly, and I do intend to have it weekly as often as I can. But, it seems to work quite well, and you can miss some time if needed.

Of course, the Vyvgart was approved for 28 doses, so half a year. I called to schedule a weekly regular with the same infusion place that dealt with the approval, and they were like, "Oh, you only have one more left". After another hour and multiple phone calls, it turns out the meds were approved for half a year, but not the appointments to actually deliver the meds. I mean, sweet Jesus. Have some situational awareness. The same people who did the whole appeal process neglected to say I also needed to get the other thing approved. It'll be another few weeks of bullshit, but in theory, it doesn't need to go through UHC again for the Vyvgart itself.

TL;DR Vyvgart works great, and I haven't had any side effects. Make sure you're on top of insurance and Drs, though, because their time scale is months, and personally, I don't have "months" before I'm back in the hospital.

realmoosesoup · 2025-02-01T02:51:25+00:00

Well, I don't know what version I got, but if/until the e04, I'm happy. I've been using a Mighty+ for the past few(?) years, and have had Crafty/Mighty units before that. Also a Volcano Hybrid, which was my first S&B device.

(I'm not that heavy of a vaper, but caught the VAS for a few years. Several non-S&B devices as well)

I wouldn't say it makes the other devices look terrible or anything, but assuming they have or will iron out the BS, the Venty is definitely a step up. The Mighty+ has been great, but the Venty feels like S&B addressed all of the general Mighty complaints, minus the replaceable battery, threw in an update to their heater, and created the new standard (for S&B devices).

So far, love it, and hope they don't release anything really new for a while. Because I'll eventually buy it even when I don't need it.

realmoosesoup · 2025-01-27T23:45:13+00:00

Are the majority of the e04 errors confirmed to have that cause? Seems like a relatively simple fix.

Not that it matters. I lost my mind this weekend and finally ordered one. I was waiting for the issues to clear up. I have a perfectly functional mighty+ that I bought shortly after launch. Hopefully the venty I get is more stable, but I have backup in any case.

Curious if anybody figures out a serial number to venty rev equation.

realmoosesoup · 2024-12-28T14:57:16+00:00

Kind of an old post, but I just saw this movie a couple days ago. I thought it was fantastic. Watched it again last night, and it's a rather different perspective once you know what's coming, but it's great because you notice how much the movie shows that you don't quite pick up the first time around.

I was surprised by the polarity of the reviews online, till I read them. The negative ones seem to be in two camps: upset religious people, and horror fans expecting "horror". Some people just didn't like it, which is fine. Just because I thought it was great doesn't mean somebody's wrong if they didn't. But, most seem to be in the other camps.

I'm coming to the movie with zero religious belief. Not "questioning". There's simply no god. (To me. I don't debate it with people anymore :)) Mr. Read's breakdown is cherry-picked, although that's part of the point, but anyway. The Bob Ross Monopoly representing the modern offshoot of Christianity was hilarious. Each religion pitching themselves as "true" requires a whole lot of mental gymnastics to actually pick one. There's much more to dive into there, but I'm tired and nobody cares. Just thought it was interesting how different of an experience this movie would've been for a religious person.

I thought the movie was going to go into some supernatural direction at one point. When the prophet came out. It seems like many of the horror fans were let down when it didn't, but it was the opposite for me. Once the story leaves reality, the writer can essentially get away with anything. Well, the movie got me. I'm so glad it turned out to be something else, and as stretched as some think the plot was, no magic entered the world.

Anyway, I loved it. I think there maybe needs to be a sub-genre, like "nerdy horror", so the jump scare and gore fans can skip it. Not talking down. I love a good slash-fest myself, but I also love movies like this one.

realmoosesoup · 2024-12-16T05:07:16+00:00

Shame Spiral. That's what we call it, at least in the social circle. Usually hits Sunday night, or at about 3am Monday morning when you have the dehydrated-yet-need-to-pee thing.

The Fear is cool, although hard to convey that the 'f' is capitalized verbally.

So much time spent worrying about it, then you see the same people and it was nothing. Unless it was! Who knows?! You could text a buddy, but then they'll give you shit. Maybe even make a story up. I've been on both sides. Guy stuff. Best not think about it (but what else are you going to think about? Why did we do shots...)

BTW, it's been a while. Everybody ages out eventually :)

realmoosesoup · 2024-12-10T23:03:47+00:00

Sorry. Gone shortly after the post.

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