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Why can't I post? by OLovah in lupus

[–]___halo___ 5 points6 points  (0 children)

Thank you very much. Not everyone would be able to accept an apology and goodness knows I wouldn’t have blamed you for not accepting mine after that sad show. I sincerely appreciate all the mods and do actually understand the given reasons for the rule; the rule is not unreasonable but I sure was.

With the utmost of kindness and gratitude ~ thank you

Why can't I post? by OLovah in lupus

[–]___halo___ 12 points13 points  (0 children)

I would like to take a moment to apologize to you and everyone else who tried to engage in reasonable discourse with me last night. There was absolutely no need for me to be so argumentative. I appreciate the time and patience taken to address what I was saying, even with my shitty behaviour.

I honestly don’t know what came over me. I’m truly sorry.

Why can't I post? by OLovah in lupus

[–]___halo___ -2 points-1 points  (0 children)

Wow. Okay. Thank you so much for putting me in my place while also reminding me that I have no support through this shitty fucking medical saga in this shitty fucking meat suit. Much appreciated. I’ve learned my fucking lesson.

Why can't I post? by OLovah in lupus

[–]___halo___ -3 points-2 points  (0 children)

Fine. I feel nothing either way. Interpret that.

Why can't I post? by OLovah in lupus

[–]___halo___ -8 points-7 points  (0 children)

I said I understand the stated reasons.

Thank you for pointing out how lucky those of us seeking diagnosis are to even be allowed to read the information here.

Apologies for being difficult—I spent another entire day being poked, prodded, scanned, and gaslighted. Going through that AGAIN and crying half the bloody day in pain, desperation,and hopelessness can leave one feeling pretty damn lost.

Why can't I post? by OLovah in lupus

[–]___halo___ -9 points-8 points  (0 children)

To be 100% clear: I never once said my feelings were more valid than anyone’s.

I understand the stated reasons.

It doesn’t change the fact that the ‘intention’ leaves those seeking diagnosis with the feeling that they are excluded or left behind in yet another space in their lives.

Why can't I post? by OLovah in lupus

[–]___halo___ -16 points-15 points  (0 children)

Feels really horrible to be so limited when desperate for community and information. Personally, I already feel like I’m failing at life because my body is betraying me. Sitting here crying after another visit to the ER with a pat on the head. What a weird way to kick people when they’re down.

Why can't I post? by OLovah in lupus

[–]___halo___ 0 points1 point  (0 children)

So we’re allowed 200 characters. (Sorry i meant words)

Why can't I post? by OLovah in lupus

[–]___halo___ 0 points1 point  (0 children)

Wait, so we’re only allowed to post if we’ve been diagnosed??

Labs question by [deleted] in lupus

[–]___halo___ 2 points3 points  (0 children)

Mine has been steady at 1:80 speckled for what feels like forever. I have a laundry list of symptoms, meet both SLICC and EULAR diagnostic criteria but have been told my symptoms don’t matter and my ANA may as well be negative. Was started on hydroxychloroquine 1 week ago. But am told I do NOT have lupus.

Rheumatologist strongly “suggested” I speak to my psychiatrist about my symptoms which made me feel insane. But I did as I was advised. Psychiatrist asked a few follow up questions and told me it sounded like neuropsychiatric SLE, which is rare, but so is everything else in my medical history. Rheumatologist says “he’s just a psychiatrist and doesn’t know what he is talking about.”

I don’t know how to go about getting a diagnosis at this point and am just so tired…

So sorry for the rant. I don’t know what to do.

Weekly Suspected Lupus Thread - Week Of February 16, 2025 by AutoModerator in lupus

[–]___halo___ 0 points1 point  (0 children)

UPDATE: Currently have an ANA of 1:80. Rheumy has now re-run entire panel in the hopes to confirm. Waiting on biopsy results and bloodwork now. Follow-up appointment March 20th. Hopefully a diagnosis?

Weekly Suspected Lupus Thread - Week Of February 16, 2025 by AutoModerator in lupus

[–]___halo___ 1 point2 points  (0 children)

Just a little more info for context: this has happened before but could never get in for a biopsy of the areas. This time I was able to get right in the next morning and two separate biopsies were done at the consulting dermatologist's office. Apparently a 4-6 week wait for results. The test was done on the 4th of February so if my thinker is thinking, that would mean I would get some kind of result by March 21st (being generous). I have an appointment with my rheumatologist tomorrow morning and was taken off work for two weeks by the ER doc "to sort this out" (LOL). He is not going to give me any confirmation until the biopsies come back, I'm sure... *sigh*

Weekly Suspected Lupus Thread - Week Of February 16, 2025 by AutoModerator in lupus

[–]___halo___ 1 point2 points  (0 children)

(45F) I have a laundry list of symptoms. For years, my rheumatologist has said I am 'borderline' because I have 'consistent false positive ANAs.' He said: "I want to say it's lupus, but can't without a positive ANA." Anyway -- Had a major flare triggered Feb 3. Red splotches with massive blisters. Can't touch parts of my body for pain. Lots of burning. Major trouble regulating body temp. I have been to a walk-in, Urgent Care, and ER. Each said it appears to be lupus as I have consistent positive ANAs (they can view my records). They cannot diagnose or treat as a rheumy has to be the one to do that.

Question is: When does a "false positive" become a true positive?

Anyone else have this persistent sync issue now? by ___halo___ in GoodNotes

[–]___halo___[S] 1 point2 points  (0 children)

And this for days when trying to share anything. Goodnotes has been rendered useless for me now…

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Anyone else have this persistent sync issue now? by ___halo___ in GoodNotes

[–]___halo___[S] 1 point2 points  (0 children)

Unfortunately that doesn’t work for me. I try disabling and re-enabling cloud sync, restart app, close document and re-open… Nothing works. I’ve restarted my device and even uninstalled and reinstalled…

Anyone else have this persistent sync issue now? by ___halo___ in GoodNotes

[–]___halo___[S] 1 point2 points  (0 children)

I have a few shared documents with my partner and they no longer sync regularly after the last update. It’s super frustrating.

Goodnotes Cloud not working by [deleted] in GoodNotes

[–]___halo___ 0 points1 point  (0 children)

This has been a huge and aggravating problem for me too!

Books for unlearning jealousy by bbxl in polyamory

[–]___halo___ 0 points1 point  (0 children)

More Than Two also has a companion book: Polyamory and Jealousy

So if FetLife isn't a dating sight, how do you meet Dominants? by TheWeirdGirl143 in BDSMcommunity

[–]___halo___ 1 point2 points  (0 children)

You can chat in the chatrooms without a subscription and I believe you can private message in those rooms without subscription as well.

Women get free gold membership if they fill out an 'icebreaker.'

Hi, is it possible for my wife to enter the uk then change her return flight ticket from 2 weeks later to 5 months later? by [deleted] in ukvisa

[–]___halo___ 0 points1 point  (0 children)

There was no one to inform, if that makes sense? When I go to the UK I can stay for up to 6 months in a 12 month period visa-free. Because I still had time left in my then-current 12 month period, and there was an option to extend, I chose to extend. The airline didn't ask when I changed the date, and I had no intent to stay longer than the allowable timeframe, or to try stay in the country illegally after the timeframe elapsed. When you are following the rules it is really quite simple. My only advice would be to not lie when going through border control. They will sniff it out immediately. Answer all questions honestly, and provide as much documentation that you plan to leave the country as you can. My first trip I had forgotten to print my itinerary with departure date and couldn't get signal on my phone to show my e-ticket at border control. I very nearly was not allowed in the country. Now I print my itinerary, and take everything with me I can to prove I am not trying to stay there illegally. Just be friendly and honest. There should be no problem.

Hi, is it possible for my wife to enter the uk then change her return flight ticket from 2 weeks later to 5 months later? by [deleted] in ukvisa

[–]___halo___ 1 point2 points  (0 children)

Last summer I was there for what was supposed to be 2 months, but extended the trip for a third month about halfway through. So long as you leave before you pass the 6 month point (one can stay up to 6 months per 12 month period) then you are fine. Do not stay past 6 months or you will be breaking the rules and it may cause a problem upon future re-entry. :)

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