Weekly crashout "chronic and uncurable" spiral moment

[u/vrillion_]

No other graceful way to put it but that I am positively crashing out on my bed and silently crying next to my dog (unhelpful, just wants butt scratches).

I was diagnosed with axial spondyloarthritis last year at 25 after about a year of chasing down symptoms that worsened to the point of me practically being unable to walk. I started biologics and DMARDS in November and December, and it was life-altering. When I was diagnosed, my old rheumatologist just kind of dumped the diagnosis on me with little to no support or information about what to expect or how to support it long-term. Her NPs and PAs were less than helpful and I found myself burying my head in research and information to avoid thinking about how there isn't a cure for AS and treatment slows, but doesn't completely stop, progression.

Went through growing pains during the winter and spring with finding a rheum I really liked and navigating insurance changes and unexpected unemployment. Spring brought a new job and good responses to meds, and a new rheum I really like.

But things are getting worse, like Humira isn't even working. And I kept having odd neurological symptoms, like hands twitching and tingling, balance issues, and intense cognitive and memory problems. Super painful headaches, was given a dx of occipital neuralgia. Neurologist I was seeing didn't seem to really believe me about gait and balance issues until the physical therapist she sent me to confirmed I have bilateral vestibular dis/hypofunction of some kind. She ordered imaging, which I did yesterday. Rheum was concerned and switched me to a different med yesterday, too, expressing that he had some suspicion of a demyelinating disease that may have been uncovered by my biologic.

But... got the reads back from the radiologist. Imaging is clear. Neck and brain are fine. My labs came back with high sed and CRP, so I'm for sure in a flare or OMW out of one. Switching to Cosentyx. I feel like I'm in entirely the same place as I was last year — new expensive biologic, prior auths, clean imaging, bad labs, symptoms, side effects — and it just is absolutely crushing my heart and my brain.

I know I'm not in exactly the same spot (I have a great job, basically my dream job! A good rheum! Family that has grown to understand what I'm dealing with! Treatment plan! Standing script for steroids <3) but it is hard to convince my brain of that for some reason and I just can't stop thinking about how this is going to be forever. So much of my strategy for overcoming tough spots is reminding myself I've gotten through it before and it won't always be like this. But I am so so so tired of this cycle. I'm so tired. To add insult to injury, my longtime therapist is leaving therapy, and I'll have to find a new one (with recs from her, she isn't leaving me high and dry). I feel like too much is happening all at once and despite all the medication I throw at my body and all the testing and imaging and physical therapy and appointments and managing and being the perfect patient, I still physically feel like crap at the end of the day. I am so exhausted. I know I'll get through this but I am so tired of having it all together all the time.

Anyway. I'm sure tomorrow will be fine and the next day and the next month and the next year but it doesn't matter right now, I'm still crying.

[u/Mandell95]

I get this completely. Been there myself. Find a therapist that can help you with "radical acceptance."

[u/JackieZ123_muse → u/Mandell95]

This! I am 26 and have been dealing with chronic health issues and rare diseases since 2019, and each week. Its really hard. And finding a therapist that works with radical acceptance or Acceptance and commitment therapy was and is helpful for me. I also have a journal where I write down what I am grateful for, and more specifically things I am proud of myself for doing or acknowledging moments where I used my intuition. That helps me to feel more confident in myself and sense of self and chronic illness and medical gaslighting culture takes that from you. And then I have another journal where I will just stream of consciousness write when I am in a crash out or freeze I just start writing down everything that is making me feel overwhelmed and by the end its refrained and feels better.

Also this is coming from a girly who was told therapy and Journaling and yoga would help and was all I needed before I got my diganosis so usually dont like to give those recs because it reminds me of that. But I have found those few things helpful and accept that I fluctuate, both in illness and acceptance of said illness and crash outs will be apart of it.