New MCAS Meds!

Hey, peeps, just wanted to check in and give a mini life update and, you know, intentions of how it’s going to fit into writing in the future.

One of my docs started me out on a med called cromolyn sodium because of persistent GI issues. We had figured out I have hypermobility a month or so ago, which as a lifelong, genetic thing, was likely the source of a lot of GI issues, especially the super slow gut motility. I was on about it because it seems to be tightly linked to the return of the chronic fatigue that’s been taking over my life since the start of 2024. Between trying to balance the two issues, this new med was added in, introduced to me a bit like an H2 antihistamine that would help my gut. It is so much more than an antihistamine (because, for one, it’s not an antihistamine at all). It’s a mast cell stabilizer.

I’d been put on a natural mast cell stabilizer (Quercetin) to see how it would go, along with a ton of antihistamines for H1 and H2, but nothing really toted for MCAS. Partially because of the big question of if insurance will cover it. For whatever reason, it’s pricey business to treat MCAS, even though I don’t believe any of the treatments are particularly new (but I don’t want to get into the dystopia of the US health insurance situation). Insurance is currently paying for this dose at 3 times a day (4 times would be ideal, tho). Things were getting increasingly better the last months since adding in the quercetin and trying some remedies (but not cures) to the whole gut motility issues. But starting this sodium cromolyn stuff… It’s beyond any expectations I’ve had, and I’m really still coming to terms with the changes considering it’s only been a handful of days.

My stomach is no longer this background distress of boiling — something that has been with me for so long, I only noticed it was happening when the med soothed it away. I’m no longer full of extreme anxiety, another background issue that is so hard to quantify after so long. I mean, I was diagnosed with generalized anxiety back when I was diagnosed with PTSD in my late 20’s, and those were conditions with symptoms I first remember noticing in early tweens. Anxiety is a part of my base wiring at this point, and to have it suddenly stop has been, well, life altering. My mind is so silent. There isn’t a constant monologue or song or chaos of internal noise (which I now realize must have been chemicals being sent out from chronically degranulating mast cells). It is such a deep peace, that after so much noise it almost feels spiritual. Like fresh, cooling snow engulfing a brain on fire for years.

I can focus, for the most part, because my brain is so still. I can focus on a screen — and my eyes seem to be doing okay with screenwork, at the moment. My executive functions aren’t at 100% atm, tho, and the chronic fatigue absolutely took over shortly after starting this new med. If my guess is correct, the MCAS reaction is a “stimulant” to my body, and by now turning it off at a more complete level (I’m hoping one day for remission!) I’m not getting that jolt to my system. My pulse has literally slowed down to everyone else’s normal when starting this new med. It’s no longer racing randomly in the 100-130 range while barely doing anything. So my guess is I’m not getting that same norepinephrine boost to dopamine conversion that a racing heart was giving me, and I’m going to need to adjust my ADHD meds (which double as my chronic fatigue meds). But after that…

Peeps, hope is damn hard for me. The last years I’ve been spending all my time trying to learn acceptance. Acceptance of limits, of a complete lack of control with health, acceptance of not knowing what may happen… Hope was really harmful to me at times because I was using it to ignore reality and the consequences I was gaining from pushing my body when it couldn’t do the things I was determined to do. Hope was the thing that allowed me to deny my disability and not seek help when needed, etc, because surely, eventually, I was going to figure this out. I had no idea how to pace myself with hope, because there was no acceptance of reality to balance out that hope, and it was self destructive. I can’t fully remember the last proper newsletter I sent out, but that it was years ago, and it was full of hope as I explained why I was going to destroy myself and my eyes on writing because what was the point of doing nothing in the face of chronic illness? Bluntly, I’m not good at being chronically ill, while I’ve been chronically ill for many years now.

So, when I talk about my hope to get back to writing in this context, now, after having symptoms alleviate that I’ve been dealing with for years before I even understood the MCAS was likely active and impacting me, after spending the most recent months to years seeking that balance and acceptance with reality, I think that it’s more measured. More realistic. There are a lot of things in life I want to catch up on, writing being one of them.

I don’t suspect that I will be able to keep the pace I did before — because when I started writing, it was basically all I could do. My arms and head were too heavy for my body, and the fatigue and fevers kept me bed-bound, and all there was was a laptop and my desire to escape the reality of what my body was going through by writing fun, dark fantasies. It was my fuel when nothing else was working, and it kept me going — but as such, it became an intensely unbalanced relationship with my time and energy. My answer was to break from it completely (because what is balance?). I’m going to have to find a way to write and not have it take over everything, which, with my mind quieting, feels far more achievable. My ocd isn’t exactly gone, per-say, but it’s not active or demanding me to act. I’m not glued to a screen (even though focused on a screen).

It’s going to be a learning curve, tbh, because it’s going to be brand new to me and this new brain chemistry of mine. There’s the real possibility that this med might stop working, or the MCAS might flare and become stronger than the med at times, and I’ll have to learn to adapt to that and practice a different level of self care when it comes. But for now, yeah, I’ve been thinking about writing for the first time in ages. I’ve got a lot of free time (cuz still disabled and chronically ill) and the fatigue has put the computer right in front of me with a brain no longer on fire. I’m curious to see where this will lead.

I’m keeping this informal, because I’m not ready yet. It’s only been 2 full days since starting this med, and the first day I tempted my heat sensitivity out in 80 degree temps and lost, getting a fever for pushing things. My fatigue is super strong, and I don’t know if I want to wrestle with taking a ton of notes on my old books right now to start writing a new episode. I just want to enjoy the stillness for a bit and see if this change is going to take root and stay. And from there, I’ll get to learn what this new version of me is going to want out of life beyond waiting to get better.

Wishing you all the best! ^.^