Positive Progress

I guess I can start this off with since taking FMLA/Short Term Disability, I’ve really been able to get a lot of forward progress with the crazy stuff going on with my body.

It all started with the visit to the ENT back in April. Seeing my throat almost closed off. Basically putting me in to my least favorite place, the ER.

This pretty much swung into motion, going back on a very strong antifungal, supporting supplements, and making a big switch from Xolair, to Dupixent for my MCAS stuff. For the angiogram’s seen in my throat, as well as everywhere else, Sajazir was a critical thing that changed a lot.

With the medication changes, over the past 5 weeks or so, the swelling has come way down. The existential amount of inflammation I had, has basically gone to nothing. I’ve lost at least 50lbs.

I did meet with the ENT to follow up from our last scary visit, and he showed me the aftermath of what my throat looked like. “Looks like a nuclear bomb went off in there”. He wasn’t wrong. It was still pretty irritated along with the leftover remnants of the swelling.

I can honestly say that I’ve reduced the amount of pain killers I’ve been taking by over 60%. I would love to be able to come off of these. They aren’t fun by any means, but a necessary evil. I’m at least waking up to not feeling like a 100 bees have been in my mouth like it was back before the medicine changes. It was the worst thing in the world to wake up to that every morning. I’m just glad it’s minimized now.

Energy-wise, it’s getting better and better every day. Being surrounded by inflammation I can assure you, is one of the worst things anyone can have. Especially when there’s nothing to stop it. The MCAS fed the HAE, The HAE back fed into the MCAS. An unwindable cycle that gets worse with time.

I’ve made several adjustments diet wise. Going back to the food allergy test results of 2017, that definitely indicated problems with most foods that have high histamine. There’s quite a few sits that recommend drastic changes to my diet with respect to diet. The one hidden landmine I didn’t realize at all, is Citric Acid.

Citric acid is a common and highly problematic trigger for individuals with Mast Cell Activation Syndrome (MCAS). While the chemical structure is the same as the acid found naturally in fruits, about 99% of manufactured citric acid (MCA) is made via fermentation using Aspergillus niger (a type of black mold). For MCAS patients, especially those with mold sensitivities or histamine intolerance, trace residues of this mold can provoke significant mast cell degranulation and severe systemic inflammation.

My jaw dropped as I read this. Last week, I made an electrolyte drink, and didn’t feel good after the first two sips, that’s what drove me down the path of how can I reduce the amount of histamine my body cannot clearly deal with.

I’m hopeful that I’ll return to work within the next 2 weeks. I have an appointment scheduled with my GP to fill out the return to work paperwork. I’m definitely looking forward to returning, but definitely hesitant about things.

Just gotta take it one day at a time. I’d also like to give a big shoutout to my best friend Mike for helping me through an absolute shitty day, and talking me into FMLA.

Another thing I managed to get finished, was getting my medial ID band finished. Here’s the result:

All for now