Candor Creek

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...