Disclaimer: These are my opinions, and should not deter anyone from following their prescribed medical regimen. Always talk to your doctor before making any changes to your medications.
Also, the following is a raw, lightly edited stream-of-consciousness free write documenting my experience in real-time. Thar be cursing. Ye have been warned.

So the latest round of drugs to treat the recently diagnosed ulcerative colitis also seem to be a miss. The mesalamine was the first one we tried, and that only made my abdominal pain worse (it got to a level 8 and I almost had to go to the ER) and it also messed with my menstrual cycle/depleted my folic acid, which I don’t need considering the methotrexate already does that. So the GI stopped that, and we switched to budesonide and dicyclomine. I just had the cajones to try the budesonide this morning; considering my track record with corticosteroids (they bring out the hypomania and depression) I wanted to wait til I had a day off to give it a try.

And boy am I glad I did! I feel absolutely terrible! About an hour in and I want to crawl out of my own skin. As another patient so eloquently put it, “I feel like a hummingbird trapped between two panes of glass.” I don’t know if there is a safe way for me to take these meds, and I need to talk to my psychiatrist about that. I also just remembered – super random – that I think I need to call my neurologist to schedule a follow up now that I’ve gotten my MRI done. Note to self: call them in a bit.

But yeah I’m all over the place and I don’t like it and why does it have to be so damn hard to find meds that work but don’t make other things worse?!? And it was only 3 mg! I haven’t tried the dicyclomine yet because it causes dry eyes and mouth – of fucking course – and that’s exactly what I need on top of the Sjogren’s, isn’t it? Fucking fuck. It’s so fucking exhausting! It’s an uphill battle all the time and I’m just so. Fucking. Tired. But I can’t rest because I’m stressed out about what’s happening to my body and mind and feel like we’re running out of time and if I don’t push for answers then nothing gets done (as we’ve learned the hard way so many times before) and nobody on my medical team talks to each other so I have to be a conductor for the orchestra and as soon as I pause for a moment the whole machine stops.

Why is it up to the patient to carry the load of the case? It would be so great if we could just focus on healing and resting and recovering and managing the fallout of a body that just refuses to cooperate no matter what you do. That’s more than enough for anyone to bear, and no matter how wonderful our support systems, it’s a burden we ultimately have to carry on our own. And after a while you no longer have space for grief or anger or even loneliness because you’re just so damned tired. You get overwhelmed by the whole of it and feel the abyss closing in, and the monsters start to crawl out from the dark spaces of your mind, and you just want to curl up in a ball on the floor.

And this is why I fucking hate steroids. Jesus, they warp my mind so hard. Strip me of any mental fortitude I have left, and reduce me to the darkest aspects of myself. Which can get incredibly fucking dark. Exhibit A: Stephen King is one of my favorite authors. Exhibit B: Battle Royale is one of my favorite mangas.

I’m very thankful I have alprazolam in my medicine cabinet. My psych prescribes it to me so I can self-inject my methotrexate without going into mental shock, and for when my social anxiety/PTSD is triggered by crowds. I took a half milligram about a half hour ago and I believe I feel it starting to take the edge off. Funnily enough, as that’s happening I’m actually getting a bit verklmept and crying now for no reason. Like releasing that hyper-pent up energy caused a release of emotion. For every up there is a down. Which I guess makes sense for me. Bipolar is in my blood, although I’ve only got a toe dipped into the pool, thankfully, and it only rears its ugly head when triggered by things like steroids. And to top it off, I’m a “crier” – I cry when I feel extremes in various emotions, from extremely happy to very angry, especially when I’m feeling a perceived injustice, which can be embarrassing.

I feel the muscles in my jaw twitching as this chaotic energy drains from me. I think I need to meditate and take a bath. And possibly cry a tiny bit more. Got Chantress Seba in the headphones helping me come back to center.

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Whew, that was quite the emotional purge. I cried for several minutes there, and had to really get it all out. I did a bit of stretching as well, which I may want to do more of, maybe even on my aerial hammock. I feel better now, more grounded, but super drained, like I just had a really really hard trip all night out in the desert or something. Way more exhausted than I should be from a less than two-hour tour. I’m grateful for the fact that I’m an experienced psychonaut and have a great mental health team. Lacking experience with various altered states of consciousness would make this sort of experience infinitely harder, and may have even landed me in the hospital. I feel very somber thinking about that. I’ll definitely be hitting up my psychiatrist to discuss this episode when I have the energy.

Today will be one of gentle self-care and rest.

And fuck budesonide.

Thanks for reading! What sort of self-care do you practice when you’re recovering from a challenging time?

Until next time, keep on truckin…
– Renata

Update: Not long after writing this piece, I had follow-ups with my medical team, who indeed concurred that I should avoid steroids when possible from now on. It looks like I will be starting a biologic, pending some lab tests and another follow-up. Always seek medical treatment anytime you find yourself having an adverse affect to medications. Stay safe and stay strong everyone ❤