Masked and Marvelous

It’s official. The next time I leave my house, I will be wearing a particulate respirator. I’m not sure if I look like I’m about to pull off a heist, a surgery, or pull out some heavy equipment and get to work, but I’m sure I’ll be drawing plenty of stares.

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Luke, I am your father.

I guess the upsides are that it really does seal quite well and doesn’t fog my glasses. And hey, I won’t have to bother with makeup as there’s not enough of my face left showing for it to matter. The true upside is that I won’t be getting exposed to all those great outdoor triggers like pollen and ragweed and if I really have the courage to look this gorgeous in stores, theaters, medical facilities and museums, I won’t be reacting to everyone’s perfume, laundry detergent, stale cigarette smoke, products used to clean the place and so forth. I’m going to have to be willing, because after 3 weeks of this crazy merry-go-round, I’m ready to stop the madness.

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These were the masks I bought. I had to order them, but they weren’t too expensive. A pack of 10 cost me about $15. I can’t seem to remember where I found the information on which particulate respirators to choose, but they noted that they should say “NIOSH N95” on them.

While I’ve been struggling with this for years, this flare has been particularly hard. I’m not quite sure why, but like I’ve said before, I guess it’s a good thing as it’s really forcing me to own this whole mast cell thing and take more responsible action over it. In addition to beginning to rely on a particulate respirator when I’m out, I’m also changing my diet and some of my medications.

My first change was to begin taking zantac and a proton pump inhibitor again. I haven’t taken either in several months and while I didn’t think I’d been having any symptoms, I realized once I started back on them, that I actually was. I started getting really bad heartburn just in the last week, but well before that, I was getting a hungry feeling not that long after eating that I knew wasn’t really hunger and I kept ignoring it when it should have prompted me to go back on my meds. Zantac is especially important for people with MCAS, because it’s an H2 antihistamine.

While I’ve been taking benedryl since my flare began, I wasn’t doing it regularly and I kept dropping it after the first couple of days, thinking I was probably in the clear. Now I’m taking it every 6 hours without fail and recovering much more quickly from this last exposure.

I also decided to try a mast cell stabilizer called ketotifen. While a lot of people take cromolyn, I opted to try ketotifen because it’s supposed to be more effective for the entire body, while cromolyn works more for the digestive system and most of my problems seem to be stemming from respiratory issues this time around. They’re actually eye drops and are said to work great for eye symptoms, too. Since I wake up with gross gooey eyes and have dry, gritty eyes most of the day, I’m looking forward to seeing how they help.

The dietary changes I’ve made follow the low histamine diet. I have no plans of making them permanent, but while I’m carrying such a high histamine load, I figured I would be best off removing any and all possible triggers. As I whined in my last post, I really don’t want to limit my diet anymore than absolutely necessary, as it’s already quite limited in the first place because of IBS/GP (I’m probably somewhere in the early stages of GP, but it’s not diagnosed).

On top of all of this, I already take zyrtec, flonase, and singulair daily and of course there are my POTS medications, my anxiety med and my nausea med and my eye drops, all of which are associated with MCAS in some way or another. If you’re looking for ways to help improve your MCAS, check out this list.

It’s possible that I won’t even need to wear masks once I’ve been on the ketotifen for a while, but it’s probably going to be a while before I’m willing to risk going out without one. If spring is partly to blame for my flare, which would make sense, maybe I’ll be free and clear of all this in a few weeks anyway. I know it all started with a concentrated bleach exposure, but given that MCAS is all about reacting to histamine, I’m inclined to think it was several factors that had been building up. The bleach was probably just what broke that poor camel’s back.

So far, these changes are going well. I’ve dropped about 6 of the 8 lbs I gained in inflammation, my stomach is considerably less distended and my respiratory symptoms have subsided greatly. Even my headache is gone today. With some luck, my masks and new meds, hopefully I’ll be able to keep it under control long term.

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