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...

Current aesthetic: 2012 Toyota RAV4 (KBB stock photo) Normally on the days that I sleep 15 hours and wake at something like 5PM I spend the day berating myself But since I was out of the apartment for close to six hours (!!!) yesterday with constant social contact, doing something extremely stressful for anyone and with various levels of success and failure, ending with a large purchase - only to come home, completely detox everything that left with me, make a full meal, and then eventually take a planned increased dose of Seroquel (which makes me drugged and stupid, especially in the AM, for a few days as I adjust) to kill the growing mania right before heading to bed - Yeah, I counted waking to and remembering that alarm as a victory and went right the hell back to sleep and feel fully justified in doing so. I do know that I can trigger anaphylaxis if the alarm is too early and, while it should have been ok, I was absolutely a fan of complete physical recovery today. I...

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...

Thanksgiving spread at the pantry. Dear everyone in my homeroom in my high school during the late 90s: I liked food drives, and they were my favorite part of being your homeroom representative my junior year. There were two reasons, however, that I'd make a very large point of asking you to check your food dates and go out and get a few new items - maybe one can each, ones that you might like - rather than getting your parents to clean out the cupboard during our various collections. First, regardless of faith or philosophy, the "do unto others" thing is a central tenant in most of them and, as a Catholic school, this concept was never far from our eyes and ears. Beyond that, I've always believed one should treat others with respect and dignity - waitresses, cashiers, janitors - because it could be you or someone you care about in that situation someday. (What you didn't know is that, before the boxes went to local pantries or families, I sorted every box...

Current training spot. I'm experiencing the closest thing I've had to a proper outdoor autumn in four years thanks to a recent increase in meds, so I figured it was worth sharing. No geocaching or solitary hikes, of course, but I've at least been able to tolerate outdoor training with my dog underneath a pretty tree - as long as it's on a steroid day and immediately followed by a shower. No pics of Summer; she was highly stressed today and I do not believe in taking pics of stressed dogs unless it is for educational purposes. You'd think I'd be more self-conscious sitting in the middle of my apartment's courtyard with the possibility of all those neighbor eyes on me, but the goal of getting Summer comfortable is far too important to let that sort of thing slow me down. The job obliterates the paranoia. It always has.

Old friend. Something to celebrate, 13 years in the making. I've only publically alluded to this recently, but my first grad program (not the awesome one yall know about. I seldom talk about the other one) was genuinely traumatizing, to the point where there is a Sarah before that 9-month period and a Sarah after it. Sarah's already-established mental illness became genuinely crippling afterwards, affecting many things - including my performance in my next program, which still haunts me and likely always will. Among the many things affected was my ability to read. I'm not going to describe the experiences or anguish here today, but do know it was bad enough where I could not and have not read a book from cover to cover since 2005, academic or otherwise, and was seldom able to make it past the first few pages. As you'd imagine this made academics quite impossible; I left grad school after four years of rabid headbutting against the inside of my own skull due to mo...

My writing partner, from above, in a favorite position. I'm getting better at one-handed writing. Health post, but a more positive tone for those that can't handle my usual depressive bullshit. Summer cuteness for your troubles. Ah, yes, the "halfway to anaphylaxis" epipen. Rare, and opting out of it is usually a poor choice that has led to ER runs and large flares in the past. Doesn't stop me from wrestling with taking it every time, though. I was smart (?) just now and gave in to the likely inevitability of at least one Epipen in the next day or so. The reasons finally stacked up high enough: mold spike two days ago, corresponding reactivity/pre-anaphylaxis all day yesterday despite it being a steroid day and staying home (extra trips up and down the steps though), and I've now progressed to pre-anaphylaxis after eating anything or getting up off the couch to do something after a sleep cycle. Further complication: I won't have the steroid as a buf...

Not actually 4AM - it was 5. AM. It's that bewitching time of year where the temperature drops at night, and we welcome the coolness into our homes along with the smells and sounds of autumn... ...but my sequestering intensifies, as does the temperature in my home, because heat rises and stops in a closed second floor apartment. All windows remain firmly shut as they have since last snow because my body chooses to fight, with ridiculous and dangerous fervor, all of that autumnal welcoming in particular. See that tall spike? That's my worst mold allergen starting to kick in. I was blindsighted by three epi-pens in 36 hours the day after the spike. I have new tools this year. Increasing the H2 blocker (and possibly the H1 blocker) seems to be keeping me on an every-other day steroid schedule instead of a daily regimen, and my array of ice packs help when my body suddenly forgets how to regulate its temperature, which happens a lot more when trying to do things in an...