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...

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...

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...

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...

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.

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...

This is a crappy picture. BUT - After today's doctor appointment and all of the exposures therein I was overheated, sweaty, gross, and reacting - and that state plus the sun and the hot and the sharp in the physical world left me so agitated and overwhelmed that I went straight home with the sole goal of Comfort. Just - I needed the ride to STOP and only have pleasant and softness and coolness and tank tops and fleeces and air conditioning and nothing else but Summer's and my Comforts would matter today. I could do NOTHING else until some basic needs were attended to. So I got home and locked door and Summer out and tank top and AC and cool water and soft background music and fleece half-cocoon and scratch Summer's chest and glasses off and clouds came in and we napped through the afternoon. ...and when I finally roused to the point of actually waking I glanced over to see this. What you are looking at is a Beardie that doesn't like baring her underside laying ...

The chocolate I'd be eating... if I wasn't in a flare. :( I have the clarity right now, so I'm talking about a difficult topic. It's one of those mini-essays I write that sometimes stops me from getting sicker, and I need all the help I can get right now. The PMS/PMDD is right on time, which is actually a giant, relieving sign that I may be headed out of this flare soon. The second half of a cycle is always more reactive for many women, both for allergies and MCAS. Being a very rare two weeks late in Jan/Feb (!!!) due to the stress of losing my dog made me super reactive and directly resulted in my current MCAS flare and prolonged recovery. ...but it also means that the Monster is back, and I hate, fight, and fear her. I'm now laying here, still recovering, with this constant psychic pain, this rage. It's physical.  It's in my chest and arms and shoulders. I actually twitch. The emotion always comes first, and it quickly wraps itself around any nea...

Two (of many) drugs. Two stories. One really long post. These are just two of my medications. The one on the left costs about $105 each month; the one on the right is up to about $125 each month, both including standard shipping. That is over ONE QUARTER of my total income - disability and social security - each month. Before toilet paper, gas for the car, cleaning products, utilities - these need to be purchased or I will be nearly as sick as I was back when I had to live in a camper in my mother's driveway, bedridden. Many (healthy) people assumed that the health care acts during the Obama years would make life so much better; everyone would have coverage, meds would be so much cheaper, happy utopia. For eight years I and many other chronically ill Americans knew that that simply would not be the case. Yes, there were absolutely improvements that so many people benefitted from - myself included toward the end there, and I continue to benefit - but healthy people as a w...

Yo. A writer decides to write - and show off a gross, fat, stinky selfie ...so today is Rare Disease Day, which is a day to promote awareness for the weird little disorders that you see on TLC specials or read about in a Facebook forward between memes. Some are rare because they are new; others are not common due to their genetic nature. All are misfits in medical science, and most people that suffer from any one of them have facets to their diseases that people that suffer from more common disorders simply do not have to think about. Mast Cell Activation Syndrome (MCAS) is currently classified as a rare disease due to its newness. It was finally named as a condition in 2007 and given official diagnostic criteria in 2010. It is hypothesized that it is far more widespread than the data currently reflect. Seeking treatment and care for a disorder that is this new is difficult at best - and life-threatening at worst. When I saw the #ShowYourRare tag I was kinda iffy on doing anyt...

Ayyyyyy, mast cells, lmaoooooo Writing posts about symptoms I experience as a result of wonky mast cells (or any of my health issues, really) is still a little weird for me. They're not often shared by others, so it's not really something I post to commiserate about - and I'm constantly worried about being perceived as an attention whore or a pity monger. In the end, though, I take the pictures for my records anyway (which is a great thing to do if you have chronic health concerns and are fortunate enough to have external indicators) and I guess I feel that I have just as much a right to share them as someone else would with a selfie of them and their friends at a dinner or a picture of someone's cute baby. Dinners and babies are someone else's life. Symptoms are mine. I'm actually kind of excited because I found the pattern for this one: predictably, regardless of soaps or weather I get cracking, thickening, swelling, itching, stinging skin on both hand...

Me, on a three hour drive, making a pit stop in an attempt to wake myself up. I have a lot of reasons to be tired, exhausted, or sleepy most or all the time - enough, in fact, to be able to tell you the differences between the three descriptors. They are not interchangeable in my world. The symptom is hypersomnolence (too much sleepiness) and it can be a side effect of seasonal allergies, Mast Cell Activation Syndrome, bipolar disorder, and several of the medications I take. In addition, it is tiring for a body to have to carry out any semblance of a daily routine while also shouldering several chronic health issues. Finally, someone as introverted as I am gets tired out quickly in social situations. If I'm honest my life is generally one great big exhausted struggle with rest and sleep. By far the activity that is most affected by this is my driving. Sure, I can fake it around town if it's a short trip, but I have cancelled activities with people due to being ...

...and this is just the beginning. Autumn, bitchessssss. ...and all yall haters, pumpkin spice shamers, and people who chuckle condescendingly when a white girl in a seasonally-colored sweater smiles at the falling leaves can go suck a big one. This autumn-loving white woman has been pretty severely ill for the past two autumns - multiple-ER trip, bed ridden, windows sealed, life-changingly ill - and I've missed the cooler weather and the colors. My soul needs the extra time baking in the kitchen. Autumn used to be my peak geocaching season, and I loved everything about wandering around in the woods, finding rocks and taking pictures of leaves, even if I never made the find. This year I've been learning how to navagate life with the MCAS diagnosis and its various sensitivities. Thanks to wearing my UV-blocking clothing in and out of doors along with increased use of my mask outside I've so far been able to stay out of an emergency zone for the entire month of Sep...