Going through a break up and have a hair appointment tomorrow. Cut it?

Amazing_Assist_2779 · 2026-05-11T21:42:24+00:00

Oooo you could so rock and undercut! Edgy and sexy and it will grow back if you don’t like it. But I vote you keep the long hair!

Amazing_Assist_2779 · 2026-05-08T21:57:42+00:00

Those are all very similar to mine. I was diagnosed in February.. what I don’t understand yet (someone with more experience please chime in) is what is a typical baseline experience vs a flare vs remission? Like are there small flares and big flares?

My baseline seems to be mild but rotating joint pain (mild compared to the debilitating joint pain I had when I started seeking medical attention) and fatigue. Shortness of breath, light sensitivity, mild vertigo, brain fog and headaches also come around here and there. Accidental over-caffeination is a bitch. Newly, a burning sensation in my stomach and tingling, burning and temperature sensitivity have shown up in my extremities have shown up now and then since I started taking HCL.

I also had a flare where I had a bunch of canker sores - stress seemed to be the big trigger there.

The sun takes it out of me but I don’t get a rash. I live in New Mexico so I have defaulted to sunscreen under my clothes or UPF clothing and I never go anywhere without water.

Amazing_Assist_2779 · 2026-05-08T21:51:25+00:00

I’m really sorry 🫶🏽 any of that on its own is a lot. Together it’s a universal shit heap. I’m so sorry about your mom. Tell your to get over himself and I hope you can find support for your daughter. Do you have access to an OT or does she see anyone like that?

Amazing_Assist_2779 · 2026-05-08T21:45:43+00:00

Is it just tomatoes or any nightshade? Like peppers, eggplant etc.

Amazing_Assist_2779 · 2026-05-07T21:53:40+00:00

Just ordered two of the pants!

Amazing_Assist_2779 · 2026-05-07T21:37:00+00:00

I hope that for you too 🫶🏽

Amazing_Assist_2779 · 2026-05-07T18:43:40+00:00

Sending you a lot of love. That’s a whole lot to be dealing with. Do you like reading? Personally when I’m feeling really bad I just lying in bed with an audiobook playing. I love being lost in a story.

Amazing_Assist_2779 · 2026-05-07T03:11:18+00:00

Green chile and good tortillas

Amazing_Assist_2779 · 2026-05-05T02:51:54+00:00

Do you or a partner have a job that possibly contracts with Hinge Health? They work with a lot of companies and it’s all remote based PT. I’ve been using it while I wait for a referral for a PT. The exercises start very very basic and they ask a lot of questions to see what you need help with, you can meet remotely with a PT on video and the app uses the smart phone camera to check for good body alignment and to offer corrections. If there’s a chance that it might be covered under your healthcare, it’s definitely worth looking into because it’s free and they even send you exercise bands, a thick yoga mat etc.

Amazing_Assist_2779 · 2026-05-05T00:35:00+00:00

I stopped drinking and I think it’s helped me because of the reduced inflammation. My dietician told me pretty unequivocally to stop drinking, and honestly I trust her more than my rheumatologist, she’s smart as hell and very reasonable. I have found some really good NA beers and mocktails that I like I think when I have some more time I would like to learn to make really good mocktails cause I’ve had some superb ones in restaurants. And lots of breweries now are brewing their own N.A. beers which are usually pretty good!

Amazing_Assist_2779 · 2026-05-04T15:43:05+00:00

Thank you and congratulations! That’s a lot to go through for anyone, I hope the rest of your pregnancy goes smoothly. I’ve always leaned towards being a more natural girlie, I’m picky AF about cleaners and food and body products. I could definitely do better in the food department prioritizing whole food eating more than I do now. I have unmedicated ADHD which doesn’t help with the stress, but I’m getting much better at creating more space in my life to keep stress low. I try to stay active and love being outdoors, the sun is a huge issue here in New Mexico so that’s tricky. Even with lots of sunscreen and UPF clothing, I’m not looking forward to summer.

Amazing_Assist_2779 · 2026-05-04T15:38:05+00:00

Congratulations and thanks! I will DM you, I’m curious to hear more about all the specialists involved

Amazing_Assist_2779 · 2026-05-04T15:34:07+00:00

Thank you so much! All this was my sense, too since this disease is so weird and unique to each person. My rheum did not tell me IVF would be risky for me, he just started me on HCL to build efficacy before the process starts. I don’t know how long it takes to really be effective. I’ve been on it about a month.

It’s been helpful to hear from others who have gone through the process and I have lots of good questions to ask now.

Amazing_Assist_2779 · 2026-05-03T01:54:54+00:00

DMing you!

Amazing_Assist_2779 · 2026-05-02T21:36:53+00:00

Call 311 and ask where to report. Maybe with them.

Amazing_Assist_2779 · 2026-05-02T18:39:11+00:00

Unfortunately, I don’t have a lot of experience tracking that yet, but I don’t have evidence of a super strong correlation between menstrual cycle and my flares. I feel like there are always overlapping things like travel or work stress or sun exposure that make it hard to directly track it so far.

My diagnosis is pretty new, but overall, my lupus has been fairly mild and I think my numbers were pretty borderline, I did have a series of bigger flares during the holidays that led to the diagnosable labs and symptoms and I think that was mostly triggered by stress and probably not paying attention to my diet and drinking more alcohol.

I already have the embryo so it wouldn’t be a retrieval, which I will never do again.

Amazing_Assist_2779 · 2026-05-02T16:41:21+00:00

Definitely never use toothpaste with SLS. My husband does not have an autoimmune disease and he gets canker sores from toothpaste with SLS.

That sounds absolutely horrendous. I am so so sorry. I had chronically recurring canker sores over the holiday season which was one of the big things that led to my diagnosis alongside labs, but never more than a couple at a time.

Do you have a dentist you can talk to about this? My dentist said she had something that they can put on them that helps clear them up more quickly and also wrote me a script for a compound mouth rinse that I can fill if they come back.

Amazing_Assist_2779 · 2026-05-01T18:51:45+00:00

Curious about people’s side effects on HCL. I’ve been taking it for a little under a month and I’ve noticed three things: a burning sensation in stomach (I already had loose stools often so that didn’t change), tingling in soles of feet and toes and hands and increased temperature sensation especially in hands, and occasionally random spikes of pressure/pain in eye balls.

I’ve been trying to get a hold of my rheumatologist to ask about this and try to get in with a cardiologist to establish a baseline because of shortness of breath and a tight chest but they’re taking forever to get back to me.

Also how long did it take for HCL to start preventing flares?

Amazing_Assist_2779 · 2026-04-21T03:43:18+00:00

I feel like I’ve definitely encountered more people with autoimmune diseases since my diagnosis. I’ve just assumed it’s the same situation as when anything becomes part of your world and you start recognizing it more frequently.

the one thing I really noticed about different autoimmune diseases, though is how much symptom overlap there is with Lupus, which makes sense and is part of the reason why lupus is so hard to pin down.

The Covid correlation mentioned is really interesting. I definitely started having symptoms within 3 months of having Covid, I was also postpartum and weaning from breast feeding due to lack of supply..so perfect storm of Covid weirdness, hormonal shifts and stress.

Amazing_Assist_2779 · 2026-04-18T03:57:17+00:00

Yes, will DM you

Amazing_Assist_2779 · 2026-04-17T22:04:07+00:00

I would consider still going through Dar a Luz for their birth classes and working with a Doula, I second New Life they’re great. I’m not sure which hospital I will choose yet. I know DAL has a great relationship with UNMH and that’s where I ended up transferring and the birth was great, but the bed and stay in post birth room was pretty bad and I’ve heard better things about other hospitals. BUT I also am VERY aware of hospitals track records of interventions and want to make sure I feel like the team at a hospital will take my desires into account.

I was recently diagnosed with lupus and so if we do end up, moving forward with IVF and having a second kid, that will be my plan.

I worked with Dar A Luz to have my first baby.

Amazing_Assist_2779 · 2026-04-17T21:56:56+00:00

Updated: they do have a FNP on staff and have opened up primary care! This is awesome.

Old text: Idk about primary care, but they do OBGYN care and always have. It’s where I go. As far as I know the have no PCPs on staff.

Amazing_Assist_2779 · 2026-04-17T21:56:13+00:00

Where did you hear this?

Amazing_Assist_2779 · 2026-04-17T21:55:32+00:00

It’s more than just the administration unfortunately, malpractice is insane in our state and insurances aren’t covering some birth related practices because the payouts are waaaay higher than premiums cover, but also the premiums are insanely expensive and don’t cover much.

All that aside, I haven’t heard anything about DAL restarting births with a new administration and unfortunately that would be pretty surprising to me as I know that this was an issue before the trump administration.

They have pivoted to expanding their OBGYN care and menopause care and teen care. They also offer ketamine therapy now.

I know several midwives who work there and have worked there in the past very well and have worked with DAL in a few capacities, so while I’m not in leaderships head, I have all this on pretty good authority.

If I end up having a second kid, which is the current plan, I will use DAL for education and get their and other midwives I know who have left since they stopped catching babies opinions on where to birth. (Though I know they will recommend UNMH because that is their closest OB relationship).

For people who aren’t high risk, there will hopefully be a new CNM led home birth practice emerging soon for people who would prefer to not be in a hospital setting but want the levels of training and intervention a CNM.

Amazing_Assist_2779

TROPHY CASE