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Showing posts with the label mast cell

Catching Up #1: Eco-Friendly Chronically Ill Brand-Conscious Xennial Kid

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Oooooh. This is a home water distiller. I got it about a month and a half ago and, after slowly introducing the resulting water into my diet, found my first safe alternative to the only brand of distilled water I could regularly drink. I'm quite proud of it. For over a decade I've only tolerated distilled water for drinking and cooking (and I should be brushing my teeth with it, but I wanted to keep costs down) due to reacting to additives and impurities in tap or normal bottled water. I even struggled with other brands of distilled; my theory on this point was some sort of post-distillation filtration (normal forms of filtration are a known issue for me). Buying all those bottles of water meant that I essentially had a guaranteed monthly bill of around $40/mo for clean, drinkable water. That doesn't sound like a lot unless you have to live on disability and the meager amount of food benefits you do get don't cover the *water* expenses you have due to your dis...

Mast Cell Disease Awareness Day Thing #4: A (not-so-steamy):guided shower exercise

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Spoon eater. Your friend calls with plans for the night, or you have errands to do, or you've just woken up. Shower, right? First question: *can* you shower? Showering involves three triggers (not including undiscovered reactants in bathing products) that some folks with MCD have to be very careful about: vibration/pressure, temperature, and activity. The physical act of water continually shooting out the shower head and hitting one's skin can be enough pressure to cause trouble. Some people opt for baths or jug showers to avoid this issue. How many minutes would that add to your morning routine if it was the only way you could clean yourself? The next two aren't that easy to resolve. Some folks are reactive to hot, others to cold, others to both extremes. Temperature-sensitive people have poor thermoregulation and are often swung into one extreme upon exposure to an extreme temperature. Imagine stepping out of your shower only to be so frighteningly...

Mast Cell Disease Awareness Day Thing #1: Meds 1

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First meal of the day. I wasn't gonna do this because I've been really self-conscious about sharing lately, but someone kinda gave me a nudge. Mast cells are these little regulatory powerhouses that are located all over our bodies. They're in our digestive tract, they line our lungs, they're incorporated into our optic nerve, they're in our skin - they even play a role in what crosses the blood-brain barrier. When they work correctly they do everything from protecting us from disease to aiding in the fight or flight instinct. When they work incorrectly, though, it can be a pretty spectacular fail. There are currently two recognized forms of mast cell disease. The first, mastocytosis, has been in the literature for decades and involves having way too many normally-behaving mast cells. The second, mast cell activation syndrome (MCAS) became an official diagnosis in 2010 and features the right amount of mast cells but they're super hyperactive. Both...