Candor Creek

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...

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...

I couldn't get the yogurt to fit in the container. Time for another dose. This batch is actually half MCAS, half bipolar. So right now treatment for mast cell disease (and MCAS in particular) does have a path, but it's hard to see and even harder to walk. We do have a loooong list of medications to try, but there is actually zero means of predicting which ones will work (or may instead cause a reaction) or what will address which symptom. That means that an individual doctor has a very rough guideline of "try these first" and a series of levels of meds based on things like overall cost and safety. Doc and patient will join through the meds one by one and toggle the dose. Now imagine this: you've just had a huge health crisis that has left you extremely ill. You're a single parent who now suddenly goes anaphylactic at the smell of cooking or microwaved food, or the sole wage earner who has developed severe reactions to fluorescent lighting, or a...

Hash browns - from scratch. There tend to be themes among the stimuli that can trigger a mast cell reaction, but by far the most prevalent and most pervasive is food. ...and, as with most things in mast cell disease, it's confusing. While it is possible (and not uncommon) for mast cell patients to have true food allergies, mast cell food reactions are not in this category (as of now; that definition could change). The difference is that true food allergies are caused by an excess of IgE, an antibody released by - guess who - mast cells. In mast cell food reactions IgE may not be present at all. The symptoms of the mast cell reaction are just as dangerous, however, and can lead to any on the list of MCD body-wide symptoms including anaphylaxis. Some of us can get away with soft avoidance. Others have a couple of super bad foods but everything else is ok. Some of us have a number of restrictions that can push us all the way down to just a handful of ingredients. Stil...

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...