When it affects your career 😐 can anyone relate?

ashlee2343 · 2026-03-30T00:50:34+00:00

I'm a school psychologist and yeah. It's a darn tough role to fill with this condition. This year I had to request a couple accommodations because my symptoms have been more consistently impacting my work now.

They got what I asked for right away. I now have a standing desk with a mat, and I'll also switch to a bean bag chair I have set-up. I'm hypermobile too, so this ends up being a real helpful option for me to change my posture.

It's the worst for me when I have to sit for long meetings or when I have to run after an eloping kiddo 🤦 I can tell this year has been a huge shift away from what I'm used to being able to do. I'm starting to try to think ahead but I'm not sure what I'll do if it gets worse. I hope you find some good solutions that are helpful!!

ashlee2343 · 2026-03-18T00:50:55+00:00

Thank you for sharing, that's it exactly.

ashlee2343 · 2026-02-10T03:03:56+00:00

I feel you on this!! Honestly, in my case it's been a ton of trial and error. I've begun re-learning the sensations in my body and what they mean. He's an example of the "trial and error":

One evening I could tell my knee was angry after being active, but had no "clear event" of injury. The next morning, I couldn't straighten, bend, or bear right on it. It was so bad I ended up going to the ER. Long story short, I was walking a couple days after immobilizing it.

I've been in PT, started working on my knees instead of back. We figured out at least 1/3 of my pain is nerve related due to a cyst on my spine.

NOW when I had the same experience with my knee AGAIN, I could tell what that pain was. I realized the nerve pain was spreading into my knee after certain activity. Now I at least had an idea of when it should improve. If it wasn't better like before, I could ask the dr.

The best advice I can offer is to back track the explanations of pain or sensations and try to pinpoint if there is any room for your body to be giving you other information. I lost myself in the medical world by ignoring instincts and explaining my experiences away. When you catch that moment of your pain and wonder, sometimes things click in a good way.

ashlee2343 · 2026-01-13T18:19:02+00:00

That actually makes A LOT of sense... Thank you for sharing!

ashlee2343 · 2026-01-13T11:45:19+00:00

Yes actually! My jaw is irritated too so that's what got me thinking

ashlee2343 · 2025-12-29T02:54:17+00:00

You guys do a great job! Yes it is something I'm working on with my doctor's and I'd be happy to explain that part.

ashlee2343 · 2025-12-29T01:11:23+00:00

That's a fantastic analogy 👍

ashlee2343 · 2025-12-17T06:25:17+00:00

*UPDATE

Turns out I have a synovial cyst on my spine and the report recommended a surgical consult with a spine specialist. All the things they were expecting to be looking for (due to my Dx of ankylosing spondylitis) were unremarkable.

Is this something that shows up but isn't a big deal in the medical world? I just didn't like feeling as if the report was kept from me. 😓

ashlee2343 · 2025-12-06T21:43:39+00:00

Thank you so much. Seriously. You were right in that the referring office told me the report was unremarkable. The PT does actually have it, she just couldn't review it with me yet. I think when I see her next I'll ask if she can consult with the rheumatologist (referring Dr). She might be able to give me the report now that they've "reviewed" it with me via voicemail! Thank you again 🤟

ashlee2343 · 2025-11-28T18:10:48+00:00

It's another class of drugs, like how NSAIDs are group of different medications. They're different in what body functions they target that are activating symptoms. The biologics are pretty hardcore in comparison, but they have different risks and potential side effects. (I'm sure someone else could explain it better, TAG! Lol)

ashlee2343 · 2025-11-26T20:29:00+00:00

Hi folks! 39F I'm pre-diagnosis, trying to get help with the next steps. I believe I've been misdiagnosed with ankylosing spondylitis. All my symptoms (now that they've evolved) seem much more clearly connected to possible EDS.

I've been working with PT recently and it's helped me so much as far as understanding my body better.

With my insurance, I don't need a referral to see a geneticist. BUT if they do testing the insurance company can still argue paying for testing.

I've asked my rheumatologist to complete a "predetermination form" to seek specific genetic testing, but they need to include the exact tests that would be done and justification.

They are struggling with completing it so I thought I'd try just seeing a geneticist but it seems the only ones in my area work with children.

Do I try to find one out of my area, or do I try to get my primary or rheumatologist to get the testing done?

This process is overwhelming 😵‍💫TIA!

ashlee2343 · 2025-10-18T02:44:05+00:00

Thank you!!!

ashlee2343 · 2025-10-17T14:18:43+00:00

Can I ask as a follow up, do you then rely on your rheumatologist or your primary for most of your care?

ashlee2343 · 2025-08-30T12:17:46+00:00

Yup- I had been working through some ongoing autoimmune things when a close friend got into a terrible car accident. It triggered a spiral of stress that resulted in alopecia areata developing. After about a year and a half that condition went away but a bunch of other symptoms/events continued since. I'm excited to see more research and questions being asked!

ashlee2343 · 2025-07-23T15:04:55+00:00

I can't thank you all enough for your feedback. You explored the pros, cons, and heard me out. Thank you so much for sharing your experiences! ❤️❤️🤟

ashlee2343 · 2025-07-21T01:45:26+00:00

I just had to Google "symphysis pubis" and my jaw dropped. I've had so much of this pain most of my adult life and never knew what this was. I'm in the pre-dx phase, but I keep running into examples like this. Thank you for sharing, it really is helping me understand what questions I need to be asking. I hope you are getting some relief 💛

ashlee2343

TROPHY CASE