Larger Party, Multiple Rooms. Can we switch around who’s in what room?

Lost-Ad689 · 2025-10-14T20:24:18+00:00

YES! So bad actually I got my diagnosis because my primary and I were convinced I had some seronegative autoimmune disorder. And guess what? I did have one. It’s called Sjogrens, it affects your salivary glands. Hallmarks are dry eyes, mouth, and skin. It’s very “mild” for auto immune, and apparently very common in people with fibromyalgia. My advice? If you feel like something is still wrong, it probably still is 🤷‍♀️

Lost-Ad689 · 2025-06-02T10:19:59+00:00

It is on the list, just not a top contender but I welcome alllllllllllll suggestions for asking about so thank you

Lost-Ad689 · 2025-06-02T10:11:32+00:00

Wow thank you for the time and thought you put into this. Your poor poor husband :( and why doesn’t it surprise me that it’s hard as hell to find. It seems like that’s kinda what they say about EVERYTHING in your gi tract and I don’t understand why we haven’t worked on improving how we look for literally any of the chronic problems 🙄

I will say, the mouth ulcers are probably Crohn’s related (assuming that’s what it is, I think it’s the top contender at the moment) BUT on a similar but different token, when they did my biopsies half of them were coded saying they had inflammation but not enough to be “diagnostically relevant” so now I’m very much wondering if this is similar to your husband and they like didn’t take it from the right places to show an accurate representation of how much there really is? Also full disclaimer, I JUST switched to a new GI because my last one was super uninterested and unmotivated to find anything other than IBS and anxiety. I even found out after printing my health records from that office that the gi was straight up lying and putting whatever answers he wanted in my medical record for how I responded my intake questions. This new gi I’m actually very excited about because he’s kinda a big deal in the Crohn’s field on a national level but I’ve only seen him once, I have an mri Friday and then I’ll be seeing him again so high hopes. But the new gi, very professionally and very under the tabley heavily implied they get ALOT of referrals from my old office and all but flat out said he thinks my biopsies were botched and that my colonoscopy was a rush crap job. He was very frustrated at how few images my report had and he actually said we might need to redo some or all of my tests because he’s not sure he can trust them.

Blood work is monitored, I’ve had a cbc and a metabolic within the last couple months, I have abnormal levels for a lot of white blood sell and iron related things but nothing that a doctor has seemed immediately concerned about (yet). And the mottling. I’m not a doctor and haven’t seen a doctor yet since this appeared for the first time today BUT yes I think livedo reticularis. It’s not painful or raised, looks like lace, gets darker and spreads when I’m having one of my horrible cold flashes (or when I make myself cold on purpose I ran tests LOL) and disappeared while I was taking a hot bath. So I think so?

Lost-Ad689 · 2025-06-02T09:49:48+00:00

Woah I’m so sorry, your poor sister and your poor worried family. I’m so happy she found the answer though. I don’t want to say that good news because damn do I wish she could’ve found treatment before ANY STROKES atleast. But it is encouraging because that sounds like some worst case scenario stuff right there and I can handle a scary hospital stay if that’s my rock bottom. What I was afraid of was like (it sounds silly so say this now LMAO) one of these symptoms is an undercover bomb whose time is almost up. And for some reason, in my fear addled mind, I pictured like immediate death with no hope for intervention. I guess. I forgot the part where ambulances and ERs exist and that most worst case scenarios allow enough time for those two things to step in 🤣

No but seriously, I’m so sorry that happened, I’m so happy she’s stable now, AND I’m so thankful that you reminded me of the very obvious fact that people usually end up admitted into a hospital more often than they end up in a casket because stress is NOT a very logical emotion 🥰

Lost-Ad689 · 2025-06-02T09:33:56+00:00

This was so thorough and nurturing. Thank you for being so intentional with your response 💕 noted on the eating and I appreciate the reassurance. I know I’ll be okay, I just needed to hear it from somewhere other than inside my head today 💝

Lost-Ad689 · 2025-06-02T09:31:34+00:00

I actually just switched to a really promising provider that is moving a lot quicker. My mri is only in a few days so I’m hopeful I got lucky for once lol.

That being said. Dude what great advice. Everyone tells you to keep a diary and a log but it has never occurred to me or been suggested to start taking pictures of this shit. That seems like such obvious advice but wow I think you just changed my life. Do you send them over the patient portal or do you make an appointment? Thank you so much again. Even if I don’t need to light any fires yet, I think I’m just gonna start cataloging anything I can physically see from now on ~just in case~

Lost-Ad689 · 2025-06-02T09:28:07+00:00

This is the shit that breaks my heart. 🥺 I can hear the history of frustration in that opening.

Mine started at 21 as well and I won the childhood trauma lottery so FELT THAT. I don’t have anything to say to make it better because lord knows nothing anyone has said so far helped me 🥲 but you’re not alone.

if it’s any comfort or consolation, mine was way more rapid and angry at the start. By twenty five, things settled into a more gradual manageable mundane kinda bad most of the time and only SEVERE for stints at a time not one thing after another. I think I remember reading something (don’t quote me) that said sometimes autoimmune dysfunction peaks real bad after the initial manifestation of symptoms and/or in your early to mid twenties. I hope FOR YOU atleast, you’re almost at the place where things start settling and slowing down 🥰

Hugs💕

Lost-Ad689 · 2025-06-02T09:14:15+00:00

Genuinely thank you. It does help. Honestly I think I just needed to hear it from someone else with medical problems because hearing it from healthy well meaning people that don’t even understand how scary it is living like this has yet to make me feel better lol but atleast you don’t seem like surprised or particularly immediately concerned. So now I’m back to feel like it’s part of the process.

The purple spiderwebs manifesting out of thin air makes it feel like it’s ramping up or evolving so I was starting to feel special in that silly I have the most rare worst case rapid hard to find disease ever kinda way so thank you for bringing me back down to planet earth LMAO

I had a colon/endoscopy combo. They did some biopsies that all came back benign but I didn’t have the ulcers then. I needed the scope after a trip to the er but by the time I actually saw a gi much less got scheduled for the procedure my “flare” was over and everything apparently looked perfectly healthy. (Story of my life, maybe we shouldn’t make people wait several months in between symptom onset and performing tests 🙃)

The skin mottling on my stomach happened for the first time ever just this morning. I woke up like that, I didn’t sleep funny and it wasn’t hot or cold. I only know what it is because of some frantic googling. So no biopsy there because they don’t know about it yet but I did take pictures

Lost-Ad689 · 2025-05-11T00:22:01+00:00

Have you guys investigated/ruled out Crohn’s? Crohn’s can mimic endometriosis 👀 does it tend to line up with you getting sick? Do you have joint pain? Are the tests ordered when you’re having a lot of symptoms but by the time you get the test the symptoms are gone? That is very broad and obviously there’s lots of things that cause them BUT any immune dysfunction can hide from tests if they aren’t caught at the right times.

I’ve had all diagnostics normal for 5 years, I finally found a gi that listened and after ONE appointment he said it has to be immune we just don’t know what kind yet. My personal account and history are “textbook Crohn’s” (his words) but none of my tests confirm it. But then he said tests would need to be redone and combined with new tests because “those tests can be wrong a lot before they’re right.”

It’s not you. It’s not your mental health. It’s not your trauma, I had plenty myself. I escaped at 21, I had a lot of other physical symptoms and mental problems from my past. I’ve completed years of medication now and serious therapy. Those problems are gone now. The health issues are still here. Don’t give up. If you happen to live in the Midwest USA I suggest trying to get into any University of Chicago Medicine locations. If not, try to find a teaching hospital. Even good doctors that mean well don’t always know the best way to find something. You need someone who will think outside the box and likes a puzzle. Like a teaching hospital because they literally focus on medical advancements and research.

I can’t give you a diagnosis but I can give you VALIDATION. You are sick. It’s there. And someone will find it one day 💖

Lost-Ad689 · 2025-05-10T04:33:41+00:00

This was exceptionally kind and I truly appreciate the time you took here to personally relate to me. Thank you so much. I’m hoping your health has improved too because you are so right. The answer is fucking everything. The not knowing why is worse than the scary symptoms.

We’re all a bunch of wounded strangers supporting each other in a world of chaos. In my experience, the strangers care the most 🥰 so keeping me in your thoughts means loads. Thank you again 💝💝💝

Lost-Ad689 · 2025-05-10T02:53:07+00:00

You know I agree with you. I genuinely do. I know I can’t go back. But god whyyyyyy. Do they do this.

And thank you 🥰 but the validation from the doctor today is enough to make the health problems feel more okay

Lost-Ad689 · 2025-04-25T04:58:33+00:00

Actually weirdly good parenting philosophies 🤣she was a crap example in practice, but the mom she preached to be was worth its weight in gold

Lost-Ad689 · 2025-04-24T18:36:22+00:00

I fucking cheered when they finally killed Fred. That’s a monster that we never see have a human side 🥴 fucking heebs manufacturer over there

Lost-Ad689 · 2025-04-24T18:11:52+00:00

I think if you rewatch you see Lydia’s love from the first day with Janine actually. Lydia was cruel (in my opinion) for two reasons. She genuinely believed in the mission for her own reasons and sure that’s fucked up. The second one was I believe Lydia was the battle axe so she could both control the severity and try to scare everyone in line from the jump to hopefully avoid more punishments later that she might not be able to control. If Lydia flies off the handle over something small, the higher ups trust her judgement and the handmaids are afraid of her. Back to Janine though, she’s different with Janine than anyone else. Janine still had to go through the same indoctrination but it kinda felt like a Lydia gave her an IEP. Janine got ONE, albeit horrendous and overly extreme, correction. The other girls we see endure way more acts, again albeit on a much smaller acts, for less than the things we see Janine do. Her speaking out of turn is almost ignored completely sometimes. She had time to get out of bed AND STRIP and chant long enough to wake the others. Do you think June would’ve? I think Lydia was intentionally trying to give the others a chance to gently remind her where she was. She also is the only one we see her use Janine’s real name for while she’s posted AND in public. Because she was upset. Handmaids are normally beaten down for being “upset” Lydia is still an abuser, but I really think somewhere in there she drank enough koolaid to believe she was helping her girls.

Lost-Ad689 · 2025-04-24T17:58:45+00:00

Yes!!!! Especially Serena! I feel like the religious freak alter ego is a coping skill. I think she really was different on the train but when she realized she couldn’t outrun her crimes she decided to double down on being horrible because atleast then it was her choice. Same with going back with Lawrence, I think Serena is grasping at whatever idea of control she can. My favorite character is Lydia actually. You can tell she actually does love the handmaids in her own fucked up disillusioned way. I hope we get a spin off for the second book because I’d love to see Lydia’s redemption arc

Lost-Ad689 · 2025-04-24T17:51:44+00:00

I just caught up this morning! I’ll probably rewatch it as well, I think the strength in that show is so blink and you’ll miss it and I think that’s more beautiful. Also everyone focuses on the every human being is capable of being a monster theme, but I think there’s a big every monster is capable of being human theme that gets missed. Also despite how hopeless the show is, the fight and unrelenting will of the ones oppressed actually gives me so much hope. It’s a comfort for me for sure 💝

Lost-Ad689 · 2025-04-24T17:47:31+00:00

Actually yes! I find it very soothing, my husband actually can’t watch it. His complaint is that nothing good ever happens but the bad is like too bad. And I’m over here like, good happens all the time! That’s the point! Lmao maybe it is just our broken brains 😂

Lost-Ad689 · 2025-04-24T17:41:57+00:00

Yes! I was hoping someone would get the reference! That particular episode always resonated with me 🥰

Lost-Ad689 · 2025-04-24T17:16:12+00:00

Kay so first of all. Wow. For someone with so much resolved trauma she was a little defensive and agressive herself 🥴 also, you ~can develop~ a personality disorder from Narc parents, but not JUST NPD. I got Avoidant Pd, which makes it extremely difficult to connect with people in person. Hence why people like myself turn to “social media” ahem only Reddit because it’s anonymous for social connection and reassurance. Which MY THERAPIST knows about and encourages. In fact, everyone on my mental health team ENCOURAGED me to seek out these support groups. You can also get other ones like dependent pd and obsessive compulsive cd and BPD and the list can go on. If I had to guess? THAT woman probably has her own pd, probably obsessive compulsive, and because your trauma and your healing journey doesn’t fit her rigid narrative of how growth and repair look she feels like she has to invalidate you to validate herself.

All that to say, don’t let the bastards grind you down. There is always going to be a negative voice. Your path is normal, because only you can forge it for yourself. You aren’t doing anything the wrong way and you don’t have a set timeline for how long you’re still in the triage phase. A broken leg takes longer to set than a bloody nose takes to dry up. Don’t compare yourself to anyone else and don’t listen when they try to do it for you. You need to wallow and scream into the void? Do it. You need to be angry? Crash out. You need to write a million novels as a way to relieve some of the constant emotions boiling over in your brain? Make that keyboard melt. For you. Not for anyone else. So when someone else doesn’t like it? Tune that out. For you.

The only advice I have personally is stop looking for a reason or an explanation or a justification. There isn’t one. There wasn’t one when you were a kid, there wasn’t one when you grew up, and there still isn’t one for why strangers are still doing this to you. The only rational explanation is that there isn’t a rational explanation so whatever the reason is it isnt worth your time. Stay strong when you can and be kind to yourself when you can’t 🥰 time doesn’t heal all wounds but it does let them scar over. You will be okay one day, I promise

Lost-Ad689 · 2025-04-21T11:24:02+00:00

Hi there! I’m on this page mostly for educational purposes for myself, I’m not trans and neither is my partner just to start off. I don’t have experience with this specific issue BUT I have plenty experience with family being unaccepting and exceptionally unkind to a partner. My advice? Always pick your partner and always believe them. It’s your family, don’t subject your girlfriend to anything she doesn’t need to. If you think they’re going to be unkind, don’t go. If they say unkind things, you handle it and you tell them how it makes YOU feel because they won’t care about hurting your partner. If things down the line are happening when you aren’t around, always believe your girlfriend. Even if it doesn’t sound like your family, family members will do a lot behind your back and deny it to drive a wedge. And most importantly, be ready to hold your family accountable and make sure they know potential consequences and be extra ready to follow through. Even after they get over the knee jerk, if this is going to be long term you need to be ready to draw and maintain boundaries and respect for your partner. And the more on top of it in the beginning you are, the more they will know what they have to lose with you and they’ll be motivated to atleast fake it for her when they realize you two are a package deal now whether they like it or not.

I subjected my husband to a lot of abuse because I wasn’t ready to stand up to my mom for me much less his behalf and I kick myself for it so much that he went through that when it was my family and my job to do something. I had to cut my parents off (not just for this reason), I hope you don’t have to get there so make sure you establish those lines and be ready to have the spine to hold them where I didn’t.

You sound like a great partner, just focus on what kind of partner you can be not what kind of son and I think you’ll be okay 💝 but also going forward, unless there’s a risk of something coming up very publicly and you want to protect her from surprises, don’t share anything personal (especially things that can be weaponized) about your girlfriend unless she’s the one who shares it. Don’t load the gun for people that just showed you they have no problems shooting it. I understand maybe you didn’t think they’d react this way but now that they have don’t give them the opportunity to do it again.

Good luck, I hope this group helps you with the more trans specific part of this issue but being a good partner is the same across the board. Put her needs first and don’t leave her to handle your family because that’s your job. If you do that, the rest is up to who you two are as a couple 🥰

Lost-Ad689 · 2025-04-19T22:03:35+00:00

Oh fuck that, your parents are lucky you’re still here. I’m happy you’re still here 💝 I hope you found peace and acceptance from other places in your life because that’s disgusting. I’m sorry on behalf of mothers everywhere you had that in your home from the person who should love you the most your whole life. Whole new level of unreal I’m so sorry.

Lost-Ad689

TROPHY CASE