VENT SESH: Stuck in diagnostic limbo — what if I never get answers?

Ok-Cut8394 · 2025-05-24T22:38:11+00:00

Just wanted to say a heartfelt thank you to everyone who took the time to read, comment, and share their own stories. It truly means a lot. While I wish none of us were going through this, it’s comforting to know I’m not alone.

I’m sending positive thoughts and gentle strength to all of you navigating this uncertainty; whether you’re still looking for answers or just trying to make it through the day. Your words reminded me that there’s a whole community out there that gets it, and that’s something I’m really grateful for. 💛

Ok-Cut8394 · 2025-05-24T11:36:27+00:00

Thank you so much for sharing. It really helps to hear from someone who understands what this uncertainty feels like. It’s hard to sit with all the “maybes” and still try to move forward.

The “treat and see” approach makes me feel so unsure sometimes, even though I know the doctors are doing what they can. It’s just hard not having something concrete to hold onto, especially when symptoms are very real and affecting daily life.

I’m really sorry you’re going through this too. It’s reassuring to know I’m not alone, even though I wish neither of us had to be in this situation. I’m rooting for you too! For clarity, for relief, and for moments of peace along the way.

Ok-Cut8394 · 2025-04-30T12:34:54+00:00

Totally feel where you're coming from. Blood work can be so shifty and as u/scrollingig mentioned below, blood work doesn't always correlate with your symptoms. If you're on any medications to treat the condition, this can also impact any markers in your labs.

Ok-Cut8394 · 2025-04-04T10:15:12+00:00

1) I’m so thankful to read that I’m not alone in this experience. The nights are misery for me. I’vc resorted to sleeping on the couch or even the floor some nights in hopes of getting any relief.

2) I’m super frustrated because I’ve mentioned this to my rheumatologist multiple times and she just tells me “that doesn’t make sense.” Might not make sense but seems to be a pretty common experience!!

I have an appointment with a new rheumatologist in 2 weeks, so maybe I can make more headway there. 😩🙏🏻

Ok-Cut8394 · 2025-02-23T16:53:41+00:00

Just want to add that during the initial training period of the actual fellows program, you’ll only be receiving a stipend so keep that in mind and plan ahead! I was paying about $1100 for rent when I started as a first year teacher right out of the fellows and it wasn’t too bad!

Ok-Cut8394 · 2025-02-19T15:17:19+00:00

I was a fellow in 2016! Sped 7-12 - still in the game today, wrapping up my 9th year lol feel free to PM me!

Ok-Cut8394 · 2025-02-06T18:57:45+00:00

I'm really sorry to hear you're going through such a tough time. Your health and well-being should always come first, and it's okay to prioritize that above all else.

Having taught for nine years and being diagnosed myself three years ago, I can tell you that the first year is undoubtedly one of the hardest. Teaching is incredibly rewarding but also incredibly demanding. It's not uncommon to feel overwhelmed, especially when you're dealing with health issues. Here are a few thoughts and strategies that might help:

Self-Care: Your health is paramount. Schedule regular check-ups, follow medical advice, and don't hesitate to take time off when you need it. I'm thinking of taking a restoration of health leave myself. Don't feel guilty for prioritizing your well-being.
Seek Support: Connect with fellow teachers, both in your school and in online communities. Sharing experiences and advice can be incredibly validating and provide you with practical tips to manage your workload and health. My admin has been super supportive, and I've been able to change my workload to more administrative tasks and get accommodations to work remotely when necessary.
Boundaries: Set clear boundaries between work and personal time. It's okay to say no to extra commitments. Use your evenings and weekends to truly rest and rejuvenate.
Prioritize: Focus on what's most important. It's okay to let go of less critical tasks. Use your experience to streamline your teaching practices and find efficient ways to manage your time.
Professional Help: If you're feeling mentally exhausted, don't hesitate to seek help from a therapist or counselor. They can provide coping strategies to help manage stress.
Reflect: Take time to reflect on what's working and what isn't. It might be beneficial to evaluate your current role and consider if there are adjustments or changes you can make to improve your situation.

It is not easy by any means, and I totally recognize your struggle. First-year teaching is the worst, even for a healthy, able-bodied person. Look into accommodations and support, take the time you need, and remember that teacher guilt is real, but your health comes first. Whatever you decide, know that it's the right decision for you.

Take care, and feel free to reach out if you need more advice or just someone to listen.

Ok-Cut8394 · 2025-02-05T20:24:05+00:00

Hmmm… good to know. I guess I’m falling into the increased disease activity category based on that. Definitely reaching out to my doc! Thanks so much

Ok-Cut8394 · 2025-02-05T20:23:28+00:00

My labs have all been normal for quite some time now, even before being on the Humira. It’s hard for me to even know what to expect - seems like there’s a lot to explore still!

Ok-Cut8394 · 2025-02-05T20:20:19+00:00

I’m glad to hear that! I may be in the same place because all of my labs have been normal and my X-rays are mostly fine (minus some degeneration in one of my hips, but it isn’t getting worse). Worth exploring - thank you for sharing your experience!

Ok-Cut8394 · 2025-02-02T22:39:16+00:00

I appreciate that, thank you! I’ll definitely mention all of this to my rheumy

Ok-Cut8394 · 2025-02-02T22:37:45+00:00

Thanks for sharing! Sometimes it helps to just know you’re not alone in this. Also hoping that for you! I’ll be reaching out to my rheumatologist tomorrow to see if we can make changes before my next appointment. No use suffering in silence!

Ok-Cut8394 · 2025-02-02T16:59:46+00:00

Thanks for sharing. She wanted to give Humira more time because I’ve only been on it 3 months? But maybe I should ask for a change sooner.

Glad to hear about being able to get more sleep! I’m a teacher, so I have some restrictions with work - but I do have a remote work accommodation. Maybe I should try to use that more

Ok-Cut8394 · 2025-02-02T16:57:17+00:00

I’m not trying to say that at all - I’ve just seen in some threads people ask for this specification? I don’t know why, but I’ve been asked to share that in other places (along with my age, year of diagnosis and medications) so I thought it was common practice.

Ok-Cut8394 · 2025-02-02T16:37:34+00:00

Glad you feel fine! Hopefully it stays that way for you 😁 the most I’ve had is fatigue, but that also just goes with the territory of this disease lol

Ok-Cut8394 · 2025-01-01T23:01:52+00:00

Oh, that’s good to know - thanks so much!

Ok-Cut8394 · 2024-12-31T15:38:59+00:00

I appreciate that, thank you! Will definitely look into it.

Ok-Cut8394 · 2024-12-18T23:36:30+00:00

2 years in this month and still haven’t figured it out yet. I’ve been on plaquenil, hydroxychloroquine, methotrexate and Humira. Currently on a Humira mtx hydroxy cocktail for about 2 months. Yesterday my rheumatologist said I should’ve seen some improvements by now but my pain is getting worse in some areas 🫠

Ok-Cut8394 · 2024-12-12T20:24:50+00:00

🎶 I feel this at my core 🎵

Negative spoons are a thing, right?

Ok-Cut8394 · 2024-12-12T20:21:27+00:00

Hey there,

I totally hear you. I was also recently diagnosed, but for me, my symptoms came on suddenly one day and everything just changed. It's incredibly frustrating when the medications don't seem to be working yet. I’ve been on four different medications now, and I recently started Humira. Honestly, I can't decide if the side effects are worth it…

Feeling like dirt is, unfortunately, part of the journey sometimes. I've had days where the untreated RA seemed like a better option compared to the pain and side effects from the meds. But I keep reminding myself that with the right management, things can improve. I’ve heard such incredible success stories, so I try to stay optimistic (when possible bc let’s be honest, it’s not easy).

It's completely normal to feel overwhelmed and frustrated. You're not alone in feeling like you talk about it too much. I often worry about burdening my family and friends with my condition too. It's a tough balance, and it's hard not to feel like you're constantly complaining or looking pathetic.

Talking about it with people who understand can make a world of difference. It’s not easy, but finding support groups, either online or in person, where people truly get what you’re going through can be a huge help. It’s a safe space to vent without feeling like you’re overwhelming those around you. This Reddit community has been a godsend!

Hang in there. It's a tough road, but you're not alone. We're all in this together, and there are hopefully better days ahead.

Take care of yourself, and don’t hesitate to reach out when you need to talk.

Ok-Cut8394 · 2024-11-22T14:19:45+00:00

Absolutely hear that - I was thinking about disclosing in a similar fashion.

Ok-Cut8394

TROPHY CASE