Candor Creek

Tiny details. About a week ago I was a white, 30-something female with no Halloween decorations, which I'm pretty sure is illegal. I did used to have a really cute stuffed pumpkin in grad school, but I think I lost that to the mold house. Anyway, I seem to be somewhere between Harvestcore and Semi Spoopy Lite - both of which are hilarious because my nerves can't handle anything of a Spoopy nature well and I am so horrifically allergic and reactive to all the natural prettiness of the season. I'm not wholly bereft of the season, however; I seem to naturally manufacture lovely autumnal scenes now in my kitchen with all the squash and baking that happens behind my still-closed windows. A few years ago it was brought to my attention that not many people say "autumn" in my area, while that is my default name for the season. Having moved a lot as a kid I do have a cobbled together dialect and I still get remarks as I move as an adult. I don't mind, but once in a wh...

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...

Relaxed (but aware) at my feet. Vaccination day. Did much better than I anticipated given she boarded here a week ago; she didn't tremble once and gave only a single whine. Treats from the doc helped smooth that last bit out. Summer's been on anti-anxiety meds for a week now, long enough for canines to start seeing benefits (in humans is usually closer to two weeks). She never looked outright drugged but a couple times she seemed to be...figuring something out? Somewhat restless? She couldn't find a good spot to rest sometimes on the second and third days. A bit pacey, indicating mild stress, but no panting. On day three or four we ran into friends (including canine) on our walk. We were in the courtyard and mostly standing in her "problem spots" where the sound reverberates differently and sets off her extremely delicate noise sensitivity. This can be very high stress for her. I noticed, however, that while she was still distracted and orienting tow...

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...

These numbers change so quickly - here's the best I can do to show you where the forest line is. Graphic by Fox 6 Milwaukee. I needed to write into the void today. I live in Green Bay, Wisconsin. Among the people that can remember to name this state we're generally known for either cows, cheese, football, or maybe the occasional serial killer. By longitude we're about as middle America as one can get, so we've had the blessing of the continental cushion where the wiser among us watched COVID-19 land and, predictably, explode on our country's coasts. Some of us took action before even infected coastal states took precautions. Right now we know that we're expecting the same wave of confirmed cases that everyone else is as we hunker down. We have opportunities our coastal brethren- namely, foresight - did not necessarily have. I've been tracking daily case numbers since WI case #1, and I think we were the tenth state infected. Our worst spots are...

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...

My amazing hairstyle. XD I feel sorry for straight-haired people. First, they have to keep up with popular styles in a way that no naturally curly girl ever has to. Sure, some of us try, but we generally understand that we're not gonna tame our hair into staying in "The Rachel" every day during high school. Curly styles never really go in or out of fashion and they depend entirely on the particular head you're looking at. It's like having an inimitable, trendsetting look. You're the only one in the room that has it. Second, straight-haired folk are kinda limited on those bad hair days or the times when they just don't want to deal with their tresses: the classic ponytail, a basic bun. When you're curly, though, everything turns into a style. Ponytails with corkscrews or buns with little curly tips have walked their ways down red carpets; for some of us those are our late-to-class looks. My own curly coif is a hot mess right now. Thanks to t...

Romp. Summer and I tried a little "playtime" in the snowy courtyard today, but it wound up being recall practice. She is very good at recall; what she isn't good at is being comfortable in the courtyard. I'm reasonably convinced that it has to do with an echo/reverberation between the buildings that she's particularly sensitive to. She's far more comfortable in these pictures because the snow muffles that reverb somewhat but in the warmer months the stress she experiences just sitting in the middle of the grass is truly alarming. It's stretching my experience as a behaviorist - and I love that for me, but not for her because it delays her resolution. I have some new plans for the upcoming year, however, that may help along with the normal exposure stuff. "There's home." "Complete recall!" I know she's not truly at ease in these pics. She would not roll around and play like she did in a differen...

My guardian during depressive evenings. I went three months and nearly two weeks with no epipen (!!!!!!) which was a huge milestone for me. Avoided it twice in that time by taking a certain med during what I call pre-anaphylaxis, but tonight's attack descended hard and fast. I almost thought I'd need the second pen. Now is when I'll own up to the weird depression I've had for a week - and you'll see why in a moment. A particularly rough two weeks of PMDD came and went, I was good and active for about five or six days, and then the paralyzing fog knocked me out again. Finally called psych doc so that she knows and we are not adjusting meds yet for various reasons, all of which I agree with. One of these is that one of the symptoms of MCAS can actually be depression (and anxiety) due to all those mast cells mucking things up in that blood/brain barrier. This means that if I'm having an inflamatory response the depression could be a side effect of that. Fu...

Another musician on drugs. It's kinda amazing what can happen when you're on (and adjusting) proper medication and are working with a competent and caring psych team that is capable of putting up with your extensive medical issues. I'm aware that most of the people reading this probably don't know that I have any musical hobbies at all save being a proud alto - but my musical inclinations were early and strong. One of my earlier memories is being just under five and figuring out the interlude to "Fool on the Hill" on the little blue recorder I had gotten at Disneyland that day. I grew up in a singing family where we'd put on the tunes and harmonize: Mom took the alto part, my sister took soprano, and I took/figured out the third part. It turned out I had perfect pitch and subsequently taught myself several instruments by ear - none well, but I had good starts. I started writing four part harmonies by high school. I unfortunately learned that these...

Not for show. I did a thing tonight. Despite the PMDD it was a really good brain day today. I was a particularly ineffective shepherd yesterday due to the afforementioned mood instability, so I decided that the only reason I'd leave the apartment today was to do lovely things with Summer. She and I went to a park and geocached, then visited our fave pet supply store for a Big Treat. She's halfway through a deep brush. We even got her license sorted for the year. All of this is pretty amazing on it's own, but the fact that I got the guitar out on top of that is unprecedented. I actually haven't played for ten years and I certainly haven't played after accidentally driving a knife into my hand while manic and doing sonething stupid in the kitchen. That little stint required surgery and, after fixing two severed ligaments and two severed nerves, I was left with near-normal movement but permanent nerve damage and some grip weakness. The good news: it should not...

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...

Photo unrelated. Just wanted to show off the pizza I'm eating today. I'm not going to be seeing the Queen biopic. So a good chunk of my 30s has been learning that I don't have to like things just because other people do. I do love to see new things and to learn, and I want to try everything possible, but the concept of just not liking something seemed somehow rude or, at the very least, detrimental to a friendship - because so much of building relationships when you move a lot is trying to seamlessly slip into an environment you clearly weren't made for. It's easier to communicate and build relationships if you appear to enjoy everything the locals do. That's one of the cental tomes of in-group bonding. Thanks, undergrad social psychology. ;) My best example of this is playing video games. Damn near everyone I interact regularly with (yes, I interact) plays video games. Apart from the occasional side scroller or a vintage title or two I have zero drive...

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.

We're starting to look like a team here. <3 I am currently in a dose adjustment for one of my mood stabilizers. This makes me oddly groggy and loopy, and sometimes by brain lurches and I drop phones or erase sections I've written - so the current entry likely is not composed to the point I wish it to be. It was a great assessment moment, though, and one I wanted to share. After becoming slightly more concerned by her continually present and fluctuating anxiety outdoors I did some further assessment and found that Summer's fits and starts of anxiousness and the trembling preceeding leaving the apartment are all actually just connected signs of sustained, chronic insecurity and fear and some lack of confidence in the management in the big, scary outdoors (the last bit is not surprising given we've only just hit the four month mark; my home is also very different from and much quieter than her others, and I am but one person in the face of Bad Things). The be...

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...

Walk stress giving way to homecoming relief. Here's a long post for the Summer/canine behavior fan club. I cannot overstate how much I enjoy working a dog like Summer. Unpacking baggage and refolding everything with a dog is such a wonderful process - and it's so much more amazing and enriching when they're your own. Guiding them to their potential is magic. She threw me an interesting curveball this week: as soon as the weather changed a few days ago she became a fearful, trembling, disorganized mess anytime she was outdoors or we were getting ready to go out. We're back to crouching and zigzagging and sudden surges and cutting me off and refusing to go to the bathroom. It's a pretty spectacular reaction, and worrisome for her well-being. She comes from a comparable climate, so that alone should not be an issue. She now seems to be particularly scared of one area along our walk that we only cross into half the time, and the only possible oddity I can thin...