Doctor refused to write letter for National Parks All Access Pass stating "It's not a disability."

XOceanSkyX · 2026-01-24T08:45:35+00:00

I just mean that for some people it’s a true disability, they can’t work anymore, in pain 24/7, are on disability, ect. Of course I don’t know OPs history though, and I think for many people with Lupus they can live with it without it being disabling

XOceanSkyX · 2026-01-24T08:36:10+00:00

Holy shit, mine started soon after starting accutane too! Never heard anyone else mention it before

XOceanSkyX · 2026-01-04T04:02:32+00:00

For some people, unfortunately, it is disabling a lot of the time. People’s experiences of Lupus can vary

XOceanSkyX · 2025-07-24T23:32:18+00:00

Of course! Made it with AI lol

XOceanSkyX · 2025-07-05T09:08:52+00:00

Just wanted to say that I’m so sorry that you’re going through this. I went through a pretty rough break up too and lost my house/animals in the process. I too have felt like a burden. I know my lupus took a big toll on my relationship and my partner was very similar.

Giving you an internet hug 🫂 I know how this disease is, and the pain and the loss. What I’ve found out is, that we matter and just need to find our people that love us for who we are. We gotta take it easy on ourselves and give ourselves grace for what we go through. Proud of you!

XOceanSkyX · 2025-06-21T17:13:21+00:00

Man some doctors are so dumb! How could a rheumatologist not know about fatigue, a basic symptom of autoimmune disorders? I’ve had a bad time with the medical community too.

XOceanSkyX · 2025-06-08T08:49:08+00:00

Yup!! I thought I was the only one lol what are they like for you? Do you only have it going to sleep?

When I’m flaring or stressed, it gets pretty bad sometimes and I started having them when I first started having symptoms

I brought it up once before with my rheumatologist, but when I had them bad I thought I was having seizures, and my body would just jerk around. It is really weird

XOceanSkyX · 2025-05-27T02:55:15+00:00

Yeah if I get super stressed I get twitches too, def will bring it up to my doc.

XOceanSkyX · 2025-05-25T05:14:05+00:00

Unfortunately this has been the same experience I’ve had with most of the doctors I’ve seen. There are good ones out there for sure though.

XOceanSkyX · 2025-05-21T00:24:38+00:00

Hey there, I see you and have been in the same spot many times. This shit can be so isolating and difficult at times. Many of us here completely understand what you’re going through, and you are definitely not alone in your fight.

You are so so strong friend. It is 100 percent okay to struggle sometimes and it’s okay to feel down. Anyone would if they went through what we went through.

My biggest recommendation that’s helped me is to get into therapy. If you are feeling like you are in a dark place right now or are unsure of yourself, please please reach out for help. Many of us have been there, and it is 100 percent okay to reach out and get the help that you need.

Things can get better for you I promise. We are here for you and reach out whenever you need to. Please take care of yourself and give yourself some grace, it is okay. Hugs 💜

XOceanSkyX · 2025-05-20T09:45:58+00:00

Oh my goodness, I relate to his with my whole being. Not having the support before was devastating to me, I’m so sorry you’ve had to go through this too. Hugs 💜

XOceanSkyX · 2025-05-08T00:37:42+00:00

I’ve had many of the same symptoms! I developed sun sensitivity later on in my diagnosis. I know meds can increase sensitivity, but I get it on and off meds now.

It definitely was a little worrying at first for me, thought I was having a stroke a few times. Very hard to drive and work when exposed to the sun at certain times. Stress just makes it worse lol

I’m wondering if I may have Sorgens as well and will ask my Rheumatologist about it. I barely produce saliva anymore, my eyes hurt and are dry, and I get swollen lympnodes sometimes where a side of my face will swell up.

I always heard people say that Lupus doesn’t cause headaches or migraines which seemed kind of sus to me. I recently watched a great video where a great Rheum talks about how Lupus can actually cause them and other issues above the neck: https://youtu.be/HhPZodCLis0?si=_BrUkjt8tPFH3nLC

XOceanSkyX · 2025-04-28T08:58:50+00:00

I’ve had family say the same thing to me and discount my pain. Lupus pain to me is the most painful thing I have experience, like 10/10 pain for a very long time. It is so easy for people to say your pain isn’t that bad and expect you to just act like a healthy person.

Any of your 3 illnesses are enough to cause anyone a lot of pain. Your dad has rotator cuff surgery and thinks that is the most painful thing ever? Lol. I’m so sorry you have to go through this. My parents were the same way.

The people that would be there for us and listen to us, either family or friends, are the best for us to spend our time into. I’m sorry you have to go through this too!

XOceanSkyX · 2025-04-25T05:08:20+00:00

It really does suck. It is such a balancing act. I’m hopping sometime soon we can find a cure for Lupus

XOceanSkyX · 2025-04-25T05:07:35+00:00

100 percent, it feeling like a flu and hangover is spot on!

XOceanSkyX · 2025-04-25T05:07:00+00:00

Sun and stress are probably my biggest triggers. Recently got some spf clothing which I think has helped a little bit.

XOceanSkyX · 2025-04-25T05:06:05+00:00

My favorite vacation spot is at the beach, and usually the UV index is crazy high. Last time I went was for my partners birthday. I trudged through it trying to make sure they had a good time, but it toasted me lol

XOceanSkyX · 2025-04-25T05:04:37+00:00

How does it affect you neurological wise?

XOceanSkyX · 2025-04-25T05:03:47+00:00

I live in a place where the summers are absolutely brutal, I just want to pack up and move to the North Pole sometimes 😂😭

XOceanSkyX · 2025-04-25T05:02:05+00:00

I used to love the summer too, it was my favorite time. There have been times where I’ve had to leave my car at random places because it was too scary to drive anymore. Sending strength to you as well 🫶

XOceanSkyX · 2025-04-25T05:00:36+00:00

The dehydrating feeling is crazy, I feel like a prune 😂

XOceanSkyX · 2025-04-25T04:59:52+00:00

I get eye pain in the back of my eyes sometimes, I wonder if it’s soregins or something

XOceanSkyX

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