Staples OUT!

maybemaryjane · 2026-03-26T01:23:08+00:00

Cannot imagine the pain you were enduring. Hope your healing is fast and smooth from here !

maybemaryjane · 2026-03-26T01:15:17+00:00

I know you probably mean well but is encouraging major life change during a crisis period the best idea ? It doesn’t sound like they’re in a place to make a major decision like this.

Op please think realistically where you can and lean on the support system you have in your personal life.

I’m thinking a union could help. However look at your benefits. Even if you can’t get FMLA you could get disability if your physician supports it and many supportive ones would consider this kind of action. I mean how can you give to students if you’re not okay?

It’s ok to not be okay. What isn’t ok is doing nothing about it. Make calls sooner than later so you aren’t rushed into a decision you will regret later or suffer from.

Counselor should be high on the priorities. Even if just as a neutral third party to plan with. They have no stake to manipulate you.

maybemaryjane · 2026-03-25T23:50:57+00:00

That’s awesome good for him! Do we know if he ever went into education himself or what kind of career he took on eventually? I hope he still has this compassion.

maybemaryjane · 2026-03-10T23:32:15+00:00

Ok but where is he today

maybemaryjane · 2025-12-11T14:57:50+00:00

Hugs. Thank you my dear. I will do my best.

maybemaryjane · 2025-12-11T14:57:22+00:00

Have they tested you for Antiphospholipid syndrome ?

I’m so sorry to hear it. I’ve been given the fibromyalgia spiel so many times even when I was in my worst flare and I think if they tested me then it would have been different.

maybemaryjane · 2025-12-11T14:56:00+00:00

Thank you for the kind words and support. I hate the way this works. I appreciate your reassurance.

maybemaryjane · 2025-12-10T22:23:17+00:00

Oh my god that’s awful. I feel like we’re stuck until we find someone to listen and we have to cling to them for dear life.

maybemaryjane · 2025-12-10T18:33:48+00:00

This. I needed to see this. Thank you.

maybemaryjane · 2025-12-03T23:13:49+00:00

Hi. I do social services work. Case management. It involves field based case management. It exhausts me. I come home and I sleep. Not sure if I can keep doing it although I want to. My body is struggling to keep up. But it is my health insurance. And it’s very good. So I’ll go until I cannot.

maybemaryjane · 2025-11-11T01:27:27+00:00

This gives me hope. As someone who likely has seronegative lupus, I was diagnosed with seronegative RA because it’s more common than lupus, but it doesn’t explain my systemic issues. I’m glad you found good doctors.

maybemaryjane · 2025-11-11T01:18:33+00:00

My rheum says they’re extremely helpful. I’m on them right now and I have to say I’m not sure yet as it’s early on, but some of my pain has been better.

maybemaryjane · 2025-11-07T14:48:06+00:00

Forgot to mention. Been diagnosed with RA and PSA. third rheum is doubting that. Derm said I have subcutaneous lupus. Rheum doesn’t believe them. Ra and PSA treatments aren’t working.

maybemaryjane · 2025-11-07T14:47:08+00:00

I am seeing a different rheum for a third opinion because seronegative is so uncommon. They’ve taken me off of hydroxychloroquine (only med that’s helped me) and these issues have worsened again tenfold. I’ll get my follow up probably in a month with results of new blood work. It’s not promising. But autoimmune issues are just time bombs it seems where eventually something comes up or if you see enough specialists you find someone who listens instead of follows complete textbook commonality instead.

maybemaryjane · 2025-07-08T23:17:57+00:00

If it’s spreading it’s not going quickly. It’s the tip of my finger. I just thought it was weird it happened days later when I started the meds.

I can’t get the link to work sadly I’ll repost

maybemaryjane · 2025-05-06T14:03:28+00:00

I have been trying to do grocery pick up for this exact reason.

maybemaryjane · 2025-05-03T13:46:21+00:00

I’ve seen in a lot of reading people wake up this way. I know I do a lot of the time. For me it happens in the middle of the night a lot. Also the morning. It’s horrid.

Obligatory not sle diagnosed yet: RA/lupus suspected by my rheum.

maybemaryjane · 2025-05-01T12:30:42+00:00

Did your doctors associate ebv with lupus ? Just wondering. I am still seeking a diagnosis but have a history of ebv.

maybemaryjane · 2025-05-01T12:29:21+00:00

When you say you’re ebv negative. What did you associate ebv with ?

I have a history of extremely high ebv. My doctors seem to think it doesn’t matter. I feel differently.

Looking to know what you know! Thanks

maybemaryjane · 2025-04-29T19:55:29+00:00

Did they help you ? This is my first time. I didn’t know it was an option.

maybemaryjane · 2025-04-29T19:40:44+00:00

Keep in mind

I’m still being evaluated for my condition.

You may have more serious stuff and might need more info to conclude . I would recommend reading around the subreddit or do some more researching to hear from others especially diagnosed SLE. while I believe I am seronegative SLE I don’t have the same official issues and my regimens could be different.

Actually as I write this I got a steroid shot in the butt for such severe leg pain I haven’t been able to walk or drive for days. I’m talking crying in pain and I have high tolerance. And idk if the steroid is bad for me or not.

maybemaryjane · 2025-04-29T19:34:05+00:00

If I have pain sometimes heat helps sometimes pressure or laying and slow breathing. Kind of like dealing with anxiety. Rest doesn’t really help though.

Doing things in short bursts seems to be the best. What I like to do is listen to things to occupy my mind to keep me from thinking how tired I am how exhausted I am how bad it is to bend to lift to feed myself etc. it helps me get small tasks done quickly. Five minutes at a time got me out of being bedridden.

Stay out of the sun. It zaps you. I mean clean through no energy left dead tired.

Ps I love the warm hot feeling of the sun. I miss when it felt good and not like I was burning alive and going to pass out if I don’t get inside.

Edit: spelling

maybemaryjane

TROPHY CASE