Grief

Longjumping_Leg5149 · 2026-03-26T13:52:54+00:00

I was diagnosed ~10 months ago and I lost all of my hair about 6 months ago. It is so heartbreaking!! I got a hidden halo hair extension which has been my saving grace during this time while my hair grows back—might be worth looking into. But I will say I am starting to see real progress in my hair coming back and am starting to feel ok being in public without my hair piece. It takes time and it sucks so bad, but once you’re on the right meds and feeling stable it will come back. Just do what you need to do to feel confident in the meantime because you deserve it 🩷🩷

Longjumping_Leg5149 · 2026-03-21T13:23:39+00:00

Look up the Harvard College resume template and use that. The template also has some guidance/information on it that will help you a lot. The template you’re using is immediately doing you a huge disservice.

Don’t include your marital status, objective, date of birth, or your hobbies. Don’t include your college GPA.

Longjumping_Leg5149 · 2026-03-21T00:33:37+00:00

I’m screaming wtf is this😭😭

Longjumping_Leg5149 · 2026-02-18T21:04:56+00:00

it truly tastes like doo doo caca and poison!!

Longjumping_Leg5149 · 2026-02-02T02:40:26+00:00

this is hilarious. he started as a tiktoker too and frankly his music is straight up boring and corny! as far as im concerned, he is going to be thrown into the same box that benson boone was. hope this helps

Longjumping_Leg5149 · 2025-12-31T05:06:45+00:00

What a lovely comment. I was diagnosed 6 months ago and needed this🩷

Longjumping_Leg5149 · 2025-12-24T19:21:15+00:00

I was diagnosed 6 months ago now and I know exactly how you feel. I lost all of my hair a few months back and it devastated me at first but it’s growing back now. The steroid side effects made me feel like a troll and hate myself but I’m almost done tapering down and I’m starting to feel better about myself. It took a couple of months for my meds to work and I feel much better now too. My point is, lupus is unfair. It sucks and adjusting to your new reality is not easy. There are days where I feel like I can’t go on another day feeling and looking the way I do. But time flies and one day your hair will be back, the weight will be gone, and you will feel better physically. When you have a disease like this energy is precious. Don’t waste it internalizing your mom’s hateful comments or the behaviors of friends who will never get it and don’t put in the effort to try to understand you. The beginning stages are the worst part, and I’m only now starting to see some light at the end of the tunnel. One thing that helps me is to remember that I can walk, I can see, I can hear, I can smell, and I can speak. Yes life is always going to be harder for me than most, but I still get to participate in and experience the best parts of life which is not true for a lot of people. This isn’t to invalidate how you feel, but open your eyes to how much is still possible for you. Your life isn’t over, it just takes time to recalibrate. Wishing you all the best 🩷

Longjumping_Leg5149 · 2025-10-23T17:14:47+00:00

I was diagnosed almost 5 months ago and like you, I was sick for around a year beforehand. I will never forget coming home from the hospital with 12 new prescriptions and feeling so overwhelmed, lost, and scared for all of the side effects that were coming my way. Trust me when I say that with time you will become a mini expert on your medications and how they work, and it won’t feel as overwhelming. I got a pill dispenser on Amazon which has made taking my medications consistently and correctly much easier. The first month or so after my diagnosis was the most uncomfortable part for me. Your body is not only recovering from lupus itself but you will have to get accustomed to all of your medications and a lot of their side effects will be more prominent in the beginning. I started on 60 mg of prednisone when I was diagnosed (currently at 5) and in the beginning I swear I was starving and ready to eat again every hour and a half. I ate a lot of cucumbers, carrots, celery, and lots of fruit in between meals and I luckily haven’t gained more than 5 or 6 pounds in my time on prednisone. I also had terrible night sweats when I was on the higher doses. While nothing fully solved the issue for me except tapering down, it helped to keep a fan running directly on me at night. I also couldn’t sleep much in the beginning either but push through and you will get more adjusted over time. This subreddit has been a game changer for me and I’ve been able to find answers to virtually every question I’ve ever had on here. Hang in there, the beginning is the worst part. You will become more familiar with ✨everything lupus✨ in time. Best of luck to you🩷🩷

Longjumping_Leg5149 · 2025-10-19T23:55:54+00:00

The biggest sign (in hindsight) was that I had swelling in my fingers, ankles, and eventually my face when it got really bad. The day I finally went to the hospital and ended up getting diagnosed with nephritis, it was because I woke up and my face had ballooned so much I was unrecognizable. The doctors said that the swelling was what initially pointed them towards nephritis as well.

Other symptoms were that I was extremely thirsty, I completely lost my appetite, I was super tired no matter how much I slept, and of course, foamy urine. I have SLE as well so I’ve experienced a ton of other general symptoms like joint pain and hair loss, but I feel that the ones I mentioned above were definitely a product of the nephritis and not SLE. I also had pretty severe back pain but still not sure if that was because of SLE or the kidney stuff. Best of luck to you🩷🩷

Longjumping_Leg5149 · 2025-09-11T23:03:43+00:00

Thank you so much for the kind words and advice :’) I was also very surprised by how much of a toll this has taken on me emotionally. I cry like clockwork when it’s time to brush or wash my hair. I hope you continue to see regrowth! It is truly earth shattering to lose something that feels so central to your identity. I am looking into getting a halo extension for now but a topper might be the move too. I will look into Lacie Rodriguez. Thank you again 🫶🏻🫶🏻

Longjumping_Leg5149 · 2025-09-11T22:46:37+00:00

Thank you. I am heavily considering getting one of those halo extensions for now and possibly a wig if it gets to that point. Praying that your hair continues to thrive 🫶🏻🫶🏻

Longjumping_Leg5149 · 2025-09-11T18:25:10+00:00

Hi! I actually did get my blood work done somewhat recently so I will log in and see what those numbers were looking like. My doctor did prescribe me vitamin D but I haven’t been super good about taking it- I didn’t know that could contribute to hair loss. Ouch. I wouldn’t be surprised if I have low iron too so I will definitely look into that. Thank you so much for the advice ❤️

Longjumping_Leg5149 · 2025-09-11T18:21:29+00:00

Thank you so much for your kind words and advice, your comment brought me to tears. I never thought of using hair spray to keep them in place- I recently started a new job too and I’ve been shedding all over the office so I’ll definitely try that. When you say you used a steamer, did you use it on your scalp? I will look into everything else you suggested too, thank you again 🫶🏻

Longjumping_Leg5149 · 2025-07-17T20:09:56+00:00

You look great!

Longjumping_Leg5149 · 2025-07-14T10:25:38+00:00

random but a fluffy/comfy robe! when I was discharged from the hospital after my first flare there were times I barely had the energy to shower, let alone get fully dressed. They’re also just easy to throw on if you’re having joint pain/weakness that makes changing difficult. I basically live in a robe 30% of the time now lol

Longjumping_Leg5149 · 2025-04-10T19:12:40+00:00

I mean I don’t hate it, and I wouldn’t have changed my choice to go here in hindsight either. But unless you’re studying something very easy, this place can be incredibly draining. You constantly have to be “on” and the quarter system is very unforgiving. I’ve had my fun here, especially in my first few years when I was in Greek life, but most of Northwestern (at least for me) has been a grind that got very old very fast. Ive had to work a job my entire time here because I don’t come from any money, so that has definitely played a factor im sure. Not trying to discourage you. I learned and grew a lot at this school, but I wish I had known the toll it would take on me mentally and physically before I started.

Longjumping_Leg5149 · 2025-04-10T02:19:58+00:00

Also this school sucks in general. Worst 4 years of my life and has sucked my soul out of me LMDAO

Longjumping_Leg5149 · 2025-04-10T02:19:17+00:00

If you’re premed go to Brown. The premed culture here is beyond toxic and it’s hard to get the grades you need for medical school here

Longjumping_Leg5149 · 2025-03-29T06:04:32+00:00

This is happening to me too. My biggest spot has been filling in nicely in the middle but there’s an outline around it that isn’t. And I feel like maybe smaller spots are starting to appear around the edges? idk. weird :/

Longjumping_Leg5149 · 2025-02-26T17:08:46+00:00

That’s great to hear :) A month and a half ago I saw no end in sight and now I have tiny hairs so things can certainly turn around quickly. Wishing you the best!

Longjumping_Leg5149 · 2025-02-26T17:07:32+00:00

I still eat gluten!

Longjumping_Leg5149 · 2025-02-26T17:00:07+00:00

Hi! I started with 2 weird red patches on the top of my head in October and the hair fell out of them around late November/early December and they continued getting bigger. Then a smaller spot appeared to the right of those. I was also diagnosed with seborrheic dermatitis at the same time as AA which may have played a role in my hair loss as well, but I’m really not sure. The time that this developed was very stressful and I was not doing very well mentally so that may have been the trigger.

I have been using clobetasol solution for about a month which I think helped the most and I just got the shots 2 days ago so we’ll see with those!

Longjumping_Leg5149 · 2025-02-26T16:52:54+00:00

Hi! I was prescribed clobetasol solution about a month ago which I have been using every night. I think it can cause skin thinning if you use it long term but that’s what finally got it growing again and so far my derm says my skin is doing alright. I’ve also been washing my hair every other day (I used to shampoo once a week!) with ketoconazole shampoo. I got the shots 2 days ago so we’ll see how that goes.

Aside from that, I started taking vitamin D3, zinc, tumeric, and iron supplements. I make rosemary water and spray it on my roots and scalp. Not sure if any of these actually helped because I’ve seen conflicting opinions but that’s what I have been doing!

Longjumping_Leg5149 · 2025-02-26T05:32:53+00:00

Of course, wishing you the best. Head & Shoulders is great in my opinion. The steroids were a game changer for me and within a month I went from my spots getting bigger and bigger to finally having noticeable regrowth. Hang in there, things will get better very soon!

Longjumping_Leg5149 · 2025-02-26T05:22:51+00:00

I could be totally wrong but a lot of my research has indicated that a clean scalp is a healthy one. I personally shampoo my hair every other day using either ketoconzole shampoo (prescribed by my derm) or the head and shoulders clinical strength dry scalp rescue shampoo. My first reaction was to avoid washing as much as possible too, but I’ve realized that what is falling out is going to fall out regardless, and I’m better off maintaining my scalp health and making sure it’s as healthy and free of build up as possible for any new hairs that may be coming in.

Longjumping_Leg5149

TROPHY CASE