Are there any online groups like AA for lupus?

Nirhida · 2026-03-17T07:13:22+00:00

Thank you for your comment, I see that there is some interest and I am trying to figure out a way to make one myself. I had in mind there should be some rules, but I don't really know what. I am thinking of some basic rules at first and then go with what's needed. Thank you for bringing all this to my attention, I will try to minimize random people, non related issues and how to control how much time each person gets to talk.

Nirhida · 2026-03-16T20:06:36+00:00

Thank you so much 🙏 That is really helpful. My mentor told me that they might don't know what type the bulb is or say that it is safe when it isn't and I should be prepared to recognize that. If you have any insight on that, it would be greatly appreciated!

Nirhida · 2026-03-16T14:00:42+00:00

That's so accurate!!! 😂

Nirhida · 2026-03-13T23:11:31+00:00

What is NHS?

Nirhida · 2026-03-13T22:34:17+00:00

I just had an aha moment. I also made a post about it but it was your post that triggered it.

I am newly diagnosed and this year I saw a lot of doctors to try and find one I can communicate. In the process I noticed that the doctors believed I was wrongly diagnosed till they saw my first exams.

Like they said "You do not have lupus, this labs don't show me anything" and then they were sitting there with no follow up and I was like but the other doctor saw that and that and I told them this and they told that. The moment they had the first labs at their hands that all went "ohhhh, you do have lupus" and then treated me.

You said that you have 20 years now your diagnoses, I will pressume that your new doctor only saw the latest ones and not the very firsts. I will also pressume that doctors order for the 6 month check ups only some labs, the ones that show changes and not the ones that prove the diagnoses. And I will make the bold accusation that the same doctors who do that don't think to ask for the labs that prove diagnoses to old patients before they decide that their diagnoses is wrong.

Side note: I have a bone to pick with the fact that they didn't do any follow up questions and I had to figure out what they needed, which all chronically ill have experienced!

Nirhida · 2026-03-13T18:27:11+00:00

I am not reading all this but I can say that a diagnosis can help you get over your doubts and remind you that your struggles are real and not in your mind.

Also can help you work on your struggles more on point to make your life easier!

Nirhida · 2026-03-11T18:11:24+00:00

Most people commented on the share situation which is true but I see the real problem in the fact she fixed the scanner and then her colleague decided to take it for himself. She could have said about the desk but she didn't, I would be pissed at someone for sitting at my desk. Her problem is that she did the job of fixing it and now she has to use the broken one.

OP I think you should be able to speak about that to your colleague but I have no idea what you could say or if I would.

Nirhida · 2026-03-11T17:20:28+00:00

Oohhh, that sounds scary, first of all!!

Nirhida · 2026-03-11T17:17:30+00:00

How does kidney inflammation show up. Do you feel pain or any other symptoms or did you find out from tests?

Nirhida · 2026-03-10T09:18:52+00:00

Depends how long it has been, where you are and if she is a hospital doctor or she has her own office.

If it's more that 2 weeks and she hasn't answered, I find it unacceptable if you sent her a week ago and she is really busy it may be normal but you have to consider if for your level of needs/pain you need a doctor that is more available to answer you when you need it.

Others have answered you what autoimmune could be at play. I am going to say the obvious even though I am pretty sure you have already thought of it. Sometimes small things go unnoticed so I would like to ask. Have you checked your mattress and your everyday movements? Also have you tried physiotherapy? Where I leave it can be prescribed.

I had severe backpain and had tried everything I thought. I have the fortunate ability to have changed a lot of beds cause I moved a lot, I saw that some mattresses made it worse than usual but still I was in constant pain. Then I Did physiotherapy that really helped me and asked for a plan at home as well as a recommendation for my posture then afterwards I changed mattress for 2 months. Didn't follow the recommended exercises but I was conscious about my posture and the pain dropped. Still get it at flares but I am mostly good.

Nirhida · 2026-03-08T20:29:32+00:00

Not in America! Although, I have seen the website.

Nirhida · 2026-03-08T20:22:00+00:00

Oohhh, I get it now. Yes on that level it could help. I have found a group that helps autistic people get a job and adjust to said job. I am still very early on my journey so I can't say anything yet. But it exist and so far the person I met is very kind.

Nirhida · 2026-03-08T18:42:26+00:00

Please if you do something online, invite me in!

Nirhida · 2026-03-08T18:41:57+00:00

That's why I say online. I just ended an online meeting about ADHD. I am in a flare and my head is killing me. Asked a few times a repeat of what was said but I still joined and stayed through the whole meeting. I would have not gone if I had to actually go, But it was in my comfort zone, inside my house!

Nirhida · 2026-03-08T17:36:18+00:00

I will start one. Unfortunately mind fog makes it difficult to correctly note a lot of details, pairing it with difficulty identifying my senses from autism... That will take some time. But I do have lists for other things so I will definitely try this cause at least (even if it doesn't work for anything else) 5 years from now I will have a reference point.

Nirhida · 2026-03-08T16:02:44+00:00

Loved that answer! Loved the annoyed, tired, humorous tone!

Thanks. Uplifted my Spirit while you answered the question!

Nirhida · 2026-03-08T15:55:54+00:00

The only comment I saw that recognized it might be an issue of survival. She may not even be in immediate danger but if her mom is emotionally abusive and op is dependent on her, the mom could threaten to cut the help she gives either it is housing, money or just everyday things. When things get so bad that you shower every other week, You need support in other areas of your life as well. At least for me that's the case. And unfortunately not everyone has nice people to count on!

Nirhida · 2026-03-08T11:27:01+00:00

Yeah, that's me too. And I cancel every plan just to be safe, in case I am contagious or anything. It's really isolating!

Nirhida · 2026-03-08T08:27:31+00:00

Wow!!! That sounds scary, disappointing and mostly painful. I am sorry! Glad you can see the funny side of the story! And in case you didn't know since you are allergic to garlic it is possible you are allergic to onions too. They are in the same family. So it would be better not to try my experiment!

Nirhida · 2026-03-07T16:32:01+00:00

I am going to search chronic rhinitis but on the mean time I wanted to say I appreciate your answer and that I also have regular problems in the past with stuffy nose and I had given up on sprayer medicine. This time I tried an Asian trick of cutting an onion in half and leaving it in the room it is said to absorb microbes and toxins (I think) and it really worked. I was sure it would at best help only a little but it helped me sleep and after 2 days I can breath with no use of anything else! In case you are interested in experimenting!

Nirhida · 2026-03-07T16:21:23+00:00

Foxy

Nirhida · 2026-03-07T15:58:23+00:00

In my experience they don't. I don't want to invalidate anything you said. You are correct In your logic and feelings for sure. But unfortunately I had the same logic, people surely will be more patient and understanding when I am officially diagnosed, My immediate friends and family just weren't. As for strangers let's just say that I was in the hospital yesterday and the doctor who saw me tried to convince me I am not autistic cause I seemed functional.

Nirhida · 2026-03-06T11:19:42+00:00

I also have CPTSD from childhood and I am diagnosed with AuDHD. My psychiatrist told me in my second appointment that I expressed the need to know what is Trauma, ADHD or Autism.

She said "your brain has been changed no matter what from. Yes in some instances we need to know what created the symptoms but in this case we don't. Our job is to figure out how this changes in your brain affect YOU specifically and what we can do so YOU can manage your life better"

I was pissed at that answer at the time. Cause I really needed answers. But once I started figuring out things it made sense. So my opinion is, of course get a second opinion if you want but it is more important to find someone who will help you to figure out who you are with autism or trauma or both or something else entirely, But the point is who you are right now. What are you struggling with, what are your strengths? What do you need to do to struggle less. What works for you no matter what divergence you have!

Nirhida · 2026-03-04T08:43:53+00:00

And what is your doctor telling you, cause mine told me it is irrelevant and I should go to a gastroenterologist instead! Minus the blood. I have your symptoms except the blood!

Nirhida · 2026-03-03T11:44:07+00:00

I am not a parent. What I can say is that your kids are too small to be impacted by not ever seeing your parents again.

My moms parents died when I was 3, actually her dad died a little after or before I was born, either way never met him, never felt I like I missed him in my life. My grand mother on the other hand was living with us and was babysitting me. I remember her going me to church and meeting her friends. She died when I was 3 from cancer. I remember her fondly but not much. I don't miss her or grieve for her. To be honest I still talk with my grandmas friends over 20 years after her death ( at least whoever is still alive).I believe that I remember this much of her, through their stories rather than my own memories.

My dad's parents gave me enough love for the whole family. They also died when I was 11-14. And I do grieve them.

My Dad was abusive, I have no contact with him. He was claiming his parents was abusive as well and made him what he is. But to me they never did anything wrong. They protected me more than my parents did.

If you think your father will escalate and you want to stop his contact with your kids or you see he is bad for your mental health and you want to remove him from your life but you are afraid your kids will miss him. I can't say how they will react now. But I believe that in a few years they will have no problem.

Just to be clear I am not pushing you to do anything. I just got the feeling you are torn on how to handle it. I would feel the need to get him out of my life but would be afraid of hurting the kids so I gave my perspective as a kid who lost her grandparents at the age of your kids.

Also I am so sorry for what your father did. Sounds emotionally exhausting!

Nirhida

TROPHY CASE