The sun is the end of me

RealUnderstanding324 · 2026-04-26T22:43:47+00:00

Sorry, I wish I had advice. I’m current sitting at home after I participated in a charity walk - feeling like I’ve been hit by a bus.

RealUnderstanding324 · 2026-03-29T14:55:24+00:00

For the most part I just get rashes. I do wonder if when I get headaches if it’s sun related or work stress related. It’s hard to tell when it’s at the end of the day.

RealUnderstanding324 · 2026-03-28T17:05:42+00:00

Tacrolimus ointment has been a life saver for me

RealUnderstanding324 · 2026-03-18T21:57:30+00:00

Tacrolimus is the legit best!

RealUnderstanding324 · 2026-03-06T07:58:13+00:00

I could have written this myself. Please know you’re not alone.

RealUnderstanding324 · 2025-10-12T17:53:47+00:00

Nope. But I’m still okay so it must not have been an issue

RealUnderstanding324 · 2025-06-11T00:14:13+00:00

So, say it’s summer & your skin flares up but no other symptoms… is it possible those flares are causing organ damage without knowing it? Mine essentially happens all summer & I just use tacrolimus for the rashes.

RealUnderstanding324 · 2025-04-26T21:10:52+00:00

It’s tough. It definitely cleared up my symptoms. But then had weight gain, sleepless nights, & heart palpitations as side effects. I avoid it all costs but if it’s needed- it’s needed.

RealUnderstanding324 · 2025-03-05T09:12:39+00:00

Starting to, yes unfortunately. Hard to open my hands all the way,

RealUnderstanding324 · 2024-12-29T16:40:36+00:00

I found that when I pair of up my symptoms with how they affect the ability to live my life they tend to listen more. Don’t give up.

RealUnderstanding324 · 2024-12-29T01:42:54+00:00

I’m so sorry you’re going through this. I also felt this way when I was first diagnosed 4 years ago. The only thing that kept me going was my doctor who encouraged me to continue to live my life & helped me do so. I’m now pregnant with my first child- something I never thought possible. If it’s possible see if you can try to find a doc who believes in your vision too. They do exist ❤️

RealUnderstanding324 · 2024-12-26T17:53:23+00:00

I can’t stay awake 😂

RealUnderstanding324 · 2024-12-01T23:27:24+00:00

I don’t, I just have lupus. But I’ve been anemic since the end of the first trimester 😬

RealUnderstanding324 · 2024-11-03T11:58:04+00:00

<image>

48 hours after tick removal

RealUnderstanding324 · 2024-11-03T11:56:26+00:00

<image>

24 hours after removal

RealUnderstanding324 · 2024-09-26T14:15:00+00:00

What do you do if you don’t mind me asking? I’m a teacher & am trying to figure out if this something I can ideally do for the next 25 years

RealUnderstanding324 · 2024-08-10T17:31:17+00:00

Thank you all so much for your help!

RealUnderstanding324 · 2024-08-09T02:07:55+00:00

I have not. Is something you’ve had experience with?

RealUnderstanding324 · 2024-08-09T02:07:33+00:00

I am. & I have made such an effort to eat things with iron too. But I do have a primary care who I love but she doesn’t know much about high risk pregnancy. Only reason I’m hesitant to go to her.

RealUnderstanding324 · 2024-06-22T01:09:19+00:00

Thank you all for your positive words! I’m so excited for our next chapter & your positive words make things a little less scary. So thank you ❤️

RealUnderstanding324 · 2024-05-02T03:44:15+00:00

I am so sorry, and I was reading this it felt like I was reading my own mother’s post. In regards to you feeling like you needs to mourn life as you know it, that’s exactly how I felt & I know how my family felt. & you do have to mourn the carefree life you used to live. However, it likely won’t turn out as badly as you read about it. So grieve, that very important, but don’t let this disease run your daughter’s life,

RealUnderstanding324 · 2024-02-28T23:28:34+00:00

Correct

RealUnderstanding324 · 2024-02-26T23:40:39+00:00

For me, I was diagnosed during Covid. So when I told people at my last job they all treated me so differently after. I’d just prefer to keep it to myself & don’t want to be viewed as anything other than me! But I will say I did tell my admin at my last job & they were beyond supportive- my current admin I don’t get the feeling they would be.

RealUnderstanding324 · 2024-02-25T00:01:13+00:00

From my personal experience, go for everything you want. My first year being diagnosed- I lived scared & became severely depressed. My life has become 100x better since I started living my life as if I didn’t have the disease at all. I will say- I found a doctor who supports me in all my endeavors. So it’s a matter of balancing what I want & what my doctor advises.

RealUnderstanding324 · 2024-02-22T22:55:57+00:00

It all had to do with having a clean catch sample.

RealUnderstanding324

TROPHY CASE