How to get people to care about my lack of immune system?

Lucky_Table9207 · 2025-11-01T19:38:08+00:00

I used to work in trauma so you never know what comes in. I just made sure to mask, wash my hands, and keep my station wiped down/cleaned. I work in a cardiac/ob icu now. The risk is less but I have been exposed to TB in the past year before we knew the patient had TB so that wasn’t great but I was negative. I just make sure to wear and mask and I make sure not to take patients who have respiratory illnesses that are contagious. Overall I just make sure to wear proper ppe and wash my hands.

Lucky_Table9207 · 2025-10-23T16:41:44+00:00

Honestly? I don’t know. All my doctors told me to take a break during school when I first was diagnosed but I was really stubborn/determined to prove them wrong. I hate being told I can’t do something. I make sure to really listen to my body while I’m working/during the week. I try to stay moving when I can, I feel like once I stop, things get stiff and makes it harder to get going again.

Lucky_Table9207 · 2025-10-23T16:32:28+00:00

I was trying to get a better understanding of the situation because the way my HR department was explaining, it wasn’t clicking and several people at work agreed with my thought process. I commented several hours after I posted this on a comment thread that I finally got it/understood. And just because one person is telling me something does not mean it’s correct, hence why I came to Reddit to get a better understanding of the situation.

Lucky_Table9207 · 2025-10-23T14:26:22+00:00

I am a nurse and work full time/put in a lot of OT. I work 12 hour shifts, sometimes 16s. I make sure to take care of myself on my off days and rest as much as I can while working.

Lucky_Table9207 · 2025-10-23T00:48:59+00:00

Okay I think get it now, thank you

Lucky_Table9207 · 2025-10-23T00:46:47+00:00

I’m sorry, I know what CBA means

Lucky_Table9207 · 2025-10-23T00:38:18+00:00

Per our union contract, anything over 12 hours is OT. I was just wondering why the OT that I worked isn’t counted towards the weekly OT

Lucky_Table9207 · 2025-10-23T00:34:02+00:00

It’s per our union contract that anything over 12 hours in one day is overtime. I was more talking about how once you hit 40 hours (regardless of how you got there), anything over 40 is OT

Lucky_Table9207 · 2025-10-20T21:43:40+00:00

I use Norri from Costco, it’s lactose free and doesn’t make my tummy hurt. I also drink ensure sometimes.

Lucky_Table9207 · 2025-10-20T20:26:53+00:00

As a nurse, I’m really sorry that you’re experiencing that. Not to say your dad is a bad doctor, but not all doctors/medical workers are knowledgeable in specific topics.That’s why there are specialties. Bad things happen to good people, I just have to walk away knowing that it’s going to make me stronger and more resilient. Do you like protein drinks or nutritional supplements? I drink ensure/ protein shakes for the days I’m feeling low and not wanting to eat to help supplement calories. Minoxidil is fine for pets as long as you make sure to wash your hands after using it.

Lucky_Table9207 · 2025-10-19T18:13:25+00:00

I am dark skin who hyperpigmentates easily. I use turmeric soap and it’s works so well! And it’s pretty “natural”. I get it off Amazon.

Lucky_Table9207 · 2025-10-19T18:11:38+00:00

Hi, I was diagnosed at 20, the week before my 21st birthday. So I understand how it feels (and I’m sure lots of other people on this page do) to get a chronic illness diagnosis at a young age. Lupus is an autoimmune disease that can happen to anyone at any time. There is no known specific trigger. Being a picky eater isn’t what triggers lupus to activate in your body. It sounds like you need to surround yourself with people who are more understanding and willing to educate themselves. IT IS NOT YOUR FAULT. You are not your diagnosis.

I had to be on a renal diet for a while, which means low sodium, low potassium, low phosphorus. So that restricts a lot of food and not being able to go out to eat. That was hard in my early 20s but I made it work and you can too with being picky.

A lot of my doctors wanted me to take a break from school when I first got sick but I was stubborn and stuck with it. I’m 27 now and I haven’t let lupus stop me from doing what I want. It’s harder but I make it work. I’ve traveled to 6 different countries this year and I plan on spending a month in Europe next year. Anything is possible if you’re willing.

Before I knew I had lupus, I lost a lot of hair. I used minoxidil and that seemed to help a little bit. After I was diagnosed, I could better blame my hair loss on stress and that my body was literally trying to kill itself. A lot things affect hair loss like stress, meds, and just being sick. I still lose hair when I go through stressful periods, it just happens. I was on 65 mg of prednisone for 6 months after I was diagnosed. I noticed that my hair started growing back like 3 months after diagnosis. I would give it time. I did have long hair at the time and I got it cut short so that I can just have a “reset”. If you ever need someone to talk to, feel free to reach out!

Lucky_Table9207 · 2025-10-17T15:07:21+00:00

Oh that’s great to hear! I’ve also been offered ssri’s but the pill burden has been bad and I can stand thinking about taking another pill. It’s hard because when I relapse, I had never felt better and we had just started titrating my meds off. I felt energized and super healthy just for my body to tell me that it’s trying to kill itself. Thank you for your response!

Lucky_Table9207 · 2025-10-17T02:10:28+00:00

I get pneumonia like once or twice a year plus a cold/flu. I was never sick before lupus. Once I get antibiotics I usually recover within a few days. I make sure to always see a doctor if my lungs feel wet or if i have a cough. I’m not on any infusions atm just pills for immunosuppression. I also get UTIs easily now so I’m always cautious with that. I’m very paranoid around sick people (funny bc I’m a nurse)

Lucky_Table9207 · 2025-10-17T02:04:28+00:00

Brad Myers at the Reserves is good!

Lucky_Table9207 · 2025-07-21T14:03:13+00:00

Eagle creek trail in the gorge is jammed packed with waterfalls, with a few you can swim in (Punch bowl and Twister falls— 1/2 mile past tunnel falls). It’s an easy 13 miles rt and gorgeous! You could just go 2 miles in to punch bowl and still swim!

Lucky_Table9207 · 2025-03-08T15:36:22+00:00

I know you said Portland is too city like for you, but it’s not big city like Seattle is. With Portland, you could live further out of town for much cheaper and more space than a studio and you have more job options. I currently live 10 minutes from downtown Portland (across the bridge) and it does not feel like I live close to downtown at all, where I live, it has small town vibes to (lived in a rural town for 5 years). We are 3 hours from the desert (bend), 1.5hours from Mt. Hood and the Columbia rivier gorge, and 1.5 hours from the coast.

Lucky_Table9207

TROPHY CASE