chrysilla: I rocked out at Mutant Peep Nite (Hedwig Peep)
So. I've got some physical/medical issues. (Do they count as medical if nobody knows what's actually going on?)

Will start with the food stuff, b/c that's what people ask about the most. I may add medical stuff later, if people want to see what I've already been tested/diagnosed for before they start giving me more medical advice. (Have you tried... YES.)

And I will continue updating this schpiel as I collect more data (ie, hurt my tummy on more things).

How to feed your Chrysilla )
chrysilla: (will thelemic)
Having another very brain-foggy Monday. Not sure if this is due to a post-Halloween sugar crash, a weekend cleaning binge, or the DST time traveling yesterday. Or if its just a normal Monday. *shrugs*

Today I impulse-bought a pendant from a friend's jewelry shop called "Saturn Return". I had not realized that amethyst and fluorite were Saturnine stones. (And luckily, there was room in the budget for it :-P) This helped motivate me to look more into Saturn-focused sorcery, which I've been drifting into b/c of the greatest caveat of magic: If you can't beat 'em, join 'em.

Illness and fatigue are also very Saturnine themes. So I'm looking into the more proactive aspects of that planetary/deity aspect to see if there's something I'm missing. And one of the proactive bits: Following a restrictive diet. The archetype has clearly embraced me, so maybe I should make sure I'm not fighting it and making myself more tired. And obviously it started in the later half of my Saturn Return, although it didn't end when the transit did.

Saturn, rings & things )

Yeah... I think I could get behind a more Saturnine disposition. I'd actually been thinking about it before, but not in terms of this archetype which makes it so much clearer. Even before the gamer-mob, I tended towards the path of least resistance b/c it seemed easier. And continued, b/c it meant spending less energy once I turned spoonie. Now I know the value of planning in advance towards spoon-saving later on. "I don't actually need to readdress this. It was already in the contract. Here it is to read again."

Now, I wonder at how ppl will react to my laying down the law early to avoid drama later on. I'm not really worried about it, b/c the people who know me know what I've been through, and I think the people whom I want to work with in the future would respect me and mah shiny new boundaries. But I'm still curious about what happens next. The world outside is often unkind to lady lawgivers.

Overall, I've seen that socializing does increase my energy (esp now that my makeup isn't secretly poisoning me). Not sure if *responsibility* for projects and other ppl will have the same effect tho. TruGeek was kindof a let down in that department, but then that wasn't a very structured project. Even my co-show-runner almost flaked two out of three events, but our DJ was always reliable, so give it 50/50? And my podcasting project won't require me to lug heavy things and lure an unreliable group of costumed people to a yuppie nightclub once a month. This is much more low-key.


The Saturn studies coincide today with articles about "omg occult is sho popular again!" Um... it never really stops being popular, but OK. Its making me wonder if I should try again to get into professional tarot reading. Tho I'd be a Saturnine fortune teller. Not "Here's what you want to hear in a floofily mysteirous tone" but "Hello I am your pseudo spiritual life coach *SMACK*". Everyone likes edgy now, right? Meh.


In other news, last week was pretty mixed. Samhain and Cleaning Frenzy )

Unfortunately, I did not remember that next weekend I won't *be* home, so I'll have to get ahead of my weekly chores this week after work. Including setting up my food situation for the weekend trip itself. At least the house is clean?

I haven't seen many interesting social offerings on my calendar yet, so I should be fine taking the week to myself, and then socializing like crazy at my friend's wedding this Sunday. I hope. They've been wonderful about having gluten free options, so hopefully that all works out for me. And I finally remembered to cancel the extra hotel reservation tonite, go me.

Also, during the weekend's cleaning/filing frenzy I FINALLY found the GI referral. Will call tomorrow and set up an appointment.

During the weekend I kept eating the chocolates I'd picked up, which were actually not dairy free. And I kept forgetting to take a lactase pill after, but I did eventually. Today I didn't take one at all, and when I remembered I had a bit of a tummy twinge, but otherwise not explosions. So either my lactose intolerance is less intolerant, or there wasn't much dairy in those candies to begin with. Either way, more questions about my insides, I hope this new doc is ready for the onslaught.

<3 Chrysilla
chrysilla: (dw Tardis)
So... yah. Happened. I survived, and better than I would have expected, even after unexpected injuries.

Good things! )

Bad things )

Mixed things )


After the bad slip-and-fall shock on Saturday, I started having a bit of a DCon crisis of faith. Not a horrible thing, b/c it is just a con in the end, but it wasn't fun. But if 2013 was the year I figure out whether I can afford DCon *physically*, the findings are mixed at best.

For next year, I could get a handicap sticker and then 'ninja' my way around con. Avoid all or most of the giant-line events (excluding Fraggles), avoid crowds and get to the smaller indie panels and interesting things via back doors. On one hand, ppl don't really ask to photograph your costume if they don't see you. On the other, the Marriot floor was so ridiculously crowded that there was barely any room for photos. On FRIDAY. Ugh.

I already have a room reserved at the Westin, but if I change my mind I can get my deposit back. Whether I change to a different hotel or decide to skip next year.

I was less interested in swag as I expected (at least in retrospect), so I'm vaguely planning to keep a room entirely for myself next year. Maybe. We'll see. I might be willing to charge someone only 1/4 of the room cost if they get the floor or the rollaway, and I can keep the GIANT king sized bed to myself. Split 50/50 we share the bed. The rollaway wasn't that uncomfortable, but based on the terrible sleep I got on Thursday and Sunday nights it might be worth it?

It's hard to tell what DCon is worth, financially and physically, when I was to physically wrecked to enjoy it until Sunday this year. But maybe by next year I'll have some new project to show off and network for, so it might be more worth it by then?

And of course, my brain is already working out next year's costume. Which may include a lobster tail bustle. B/c I'm nutz. *headdesk*

<3 Chrysilla
chrysilla: HUGS! (HUGS!)
So, week and a half or so without posting, whups! On the other hand, the headaches have taken a pretty bad turn this late-June-early-July time of year. So I've also had to bail on socializing plans for the last couple of weeks, contrary to my long-term goals, so kinda sad. On the other hand, I learned the hard way many years ago that going out when you don't feel well can lead to high levels of more ick.

It helps to keep things in perspective. In general, this time last year I was a complete wreck. Severely chronic-fatigued, no real plan of action to deal with it, and no medical support structure to help me. Physically and emotionally depleted, probably the lowest point of the last two years of this body-fail. Specifically, I think it was early July when I had the migraine that was so severe I needed an MRI to make sure I wasn't having a stroke. (It wasn't, and now I have fun free pics of my brain, yay.)

By comparison, things aren't so bad this summer. Even with the headaches (no crazy migraine auras yet), even with having to bail on friends parties and events, even with renewed sleep deprivation & my energy levels plummeting again yesterday and today. My road to less-fail started this time last year, so didn't really become obvious until late August, so I didn't really learn how to deal with the Dog Days of Summer in NYC. Guess I'll learn now, *shrugs*.

This time I have doctors who actually help me, an acupuncturist who is nice and insightful (tho we're taking a break for this month due to financial reasons, and she's even OK with that), and have identified and eliminated dietary and lifestyle habits that were making me worse. Tho the only properly diagnosed problem I have is a barely researched hard-to-treat sleep disorder, it helps to know I have it, and my non-drug guesswork to try fixing it has been helpful.

So I'm hoping this is just a temporary thing, brought on by the heat, and also hoping that I can acclimate to the heat rather than just hide in my home all summer.

I also hope that I'm actually 'leveling' into a more interesting stage of life, b/c the alternative looks very not fun.


As for the last couple weeks of goings on...

Weekend of fabric! )

The 2.5 Day Work Week )

Doctor Visit (no, not that one) )

Patriotically Sick )

Dizzy Cooking for a Four Day Weekend )

Conked out early Sunday nite and got 9 hours of sleep for today. But this morning I had another bout of being a listless lump, almost unable to get my butt out of the house to start the day. That seemed to pass by the time I got to work, but the brain fog is still really bad. Behind the brain fog, my energy levels seem to be fluctuating, but not too low.

I think today's ick is from continued sleep dep, and thus indirectly caused by the heat wave. No matter how many aspects of my life that I hack, or how many precautions I take, you just can't control the weather. Oh well. But up until yesterday and today, my energy levels had been pretty good, so maybe I'll start feeling better now that this week's heat index is around 90F instead of 100F. And I hope I'm acclimated by DCon.

There's a Harry Potter meet up group gathering on Thursday, so I'd like to attend that, but hopefully body fail won't get in the way. I won't force myself to go if it does, tho its nicely close to one of my train lines. Its at a bar with food, but not me-friendly food, so will pack an extra lunch box for that day if I think I'm up for it. Saturday is Browncoats, but I like having my Saturdays free to sleep and/or space out. But its an option.

This morning I remembered to pack one new project into my bead kit and take it to work with me, so that's good. I think with my recent heat issues, and recent weird weather, I'm just going to stay inside on my lunch breaks with craft stuff. I didn't get around to putting some other projects together, but hopefully I can when the brain fog lifts. I haven't had much yen for jewelry work lately, despite the energy increase, but I hope it hits soon. I need shiny things for my DCon & wedding costumes, and my Etsy shop. I think I have enough seed beads & crystals to do more of those types of pieces until August, when I may have to order some more, in that nice specific "I have a list!" way that works quite well for me.

<3 Chrysilla
chrysilla: (dw Tardis)
Ooof. Migraine day. Sho many possible reasons, bleh. But it did motivate to read short stories out of an actual book today, because less eyestrain that way. Will probably resume after blahging.

Its odd tho, despite the migraine I've been relatively high energy today, and at therapy and for the beginning of my work-shift I was downright chirpy. This is good, right? I had chili and corn chips for 'breakfast', so I guess corn chips are still magical.

Also hot enough in NYC now that I could wear not-dry-yet laundry out of the house and it didn't matter. Yay?

On a related note, since I'm having trouble getting to bed on time again, and showers sometimes wake me up, or I'm too crashed out to shower *by* bedtime, I should just shower right when I get home. Even if I did have to go right back outside ... summer.


Friday was Solstice, which I wasn't really planning to do anything for aside from change the salt bowl, but friends called towards the end of the work day, and there was park, Italian bakery, and West Village walk fun. So that was quite nice :-). I really miss hanging out in the West Village, I should do that more often. Tho I probably won't attend the Pride Parade this year, b/c it would completely crash me out. But the week leading up and after will probably have a nice energy.

Was a little worried about going to Roccos for meringues, after the cross-glutening incident way back in May. In the past, I'd gone with my friend for meringues, which say gluten free on the menu, but the place is not a dedicated OMGGF bakery. And sometimes I'd crash out really hard after a nite at Roccos. On the other hand, that was months ago, when I would hang out with my friend *late* on Monday nites after work. So it could have been gluten, but it also could have been a sleep thing. I didn't feel any more crashed out than usual on Saturday and Sunday, so yay I can still have other people's meringues :-D


I got things done over the weekend, despite the rising heat index. Care & Feeding Accomplishments! )

Sewing and Fabric Accomplishments! )

Also also, there were some very productive periods of insight into my personal Care & Feeding needs. Care and Feeding of teh Chrysilla )

Just realized that I have brownies at home, and didn't bring any with me today. Durnit. Maybe I'll have one when I get home, but Mondays are late and I don't want to sugar-hype myself out of my own sleep.

Looked over some of the upcoming bills today, and it looks like my co-op maintenance bill is just my electric, at less than $20. Sometimes in June we get this abatement thing, kindof like a co-op wide refund from tax stuff credited to our accounts, and sometimes its been as much as 50% of my maitenance bill. But never all of it. Unfortunately, the bill-pay website doesn't actually show us the *bill* or any explanation, just how much we owe, so I won't know what's going on until we get it in the mail. A very nice surprise, but still weird.


I forgot that this Saturday is Nerd NYC's Recess event, yay! Except that this throws off my fabric-related plans for next weekend. Will keep the food-related chores simple and see what I have time for on Sunday. Maybe do some of the cooking on a weeknight. Also, I'll probably only be there until Geek Trivia and then go home for the nite. Tho based on how I'm feeling *right now* I'm not sure about being active this weekend. Bleh, dumb migraine.

Tomorrow there is also a Steampunk Meetup, and its right near work, so Ima go to that. It leaves me with two hours between work and meetup with which to hunt for exotic hair stuff, and maybe get the French macarons I didn't try on Friday. Should probably pack a dinner-box too, since my financial karma is bad this week. I will not try to finish the Victorian-ish jacket by tomorrow. Can bring it next month, or post pictures on the internet for interested parties.

In a few weeks, might have a gathering at my house with my DCon roommates who all want to do the Steampunk B5 cosplay project. Yaaay people coming over but not too many at once yaaay.


Wednesday I might hang out with an old friend and give him RPG books that have been sitting in my Discardia basket for him for a few months (argh, brainfog). Another couple of friends have claimed items from the basket, have agreed to pay for shipping, and now I have their mailing addys, so I will bring them to the post office either this (if no Recess) or next weekend. There's also a swap-table at Recess, if I go, and I could probably load up my rolling suitcase with stuff and leave it out. I think most of what I have left isn't strictly geeky, but I just need to get rid of it at this point.

Having a few weird attachment issues with a few items, but its less "I luv this book" and more "I never actually read this, but its been on my bookshelf since I was little, who would I be without it?" I've read about similar feelings from people with hoarding disorders, I'm surprised it doesn't come up with me more often. But I really want to not have this giant basket parked out on my floor anymore. Go *away* extra stuff! I want my space back!

<3 Chrysilla
chrysilla: (clothes)
Yay! I am awake today! This is amazing! Not quite as good as last week (before the late nite phone spam) but better than earlier this week. Also, today I got the barest hint of migraine this morning before it went away on its own. Woot. (Have had to take migraine meds Weds & Thurs, not woot. What is it about June that makes my head hurt???)

Noticeable factors: Over the weekend I went to CC and picked up a variety of GF snacks (not nec paleo). Since Saturday I'd been snacking on 'veggie chips', which include corn but also do that veggie puree thing. Wednesday I switched back to corn chips, Thursday & Friday are noticeably better. So apparently corn chips are magical. Or something. Yesterday I stopped by the overpriced local shop to get organic corn chips, and they're not giving me a tummy ache like they used to. So yay, I can at least have the organic version of a thing that probably isn't very good for me, but is still having an oddly beneficial side effect. *shrugs*

Sewing= time budget success! Money budget... not sho much. )

Will also try to be a bit more careful with grocery budget for the rest of the month, Adventures in Noms! )

On Tuesday I went for needling, and told my needler that I wanted to take July off. B/c a) want to save some extra cash for DCon, b) not sure if acupuncture is really working as well as it used to, and c) I can always get back to needling in August before DCon. If I turn out to be wrong about b, I can always call them and set up another appointment. She totally understood. I asked if I might be building up a tolerance to needling, or if my physical problems are more-fixed so now its the mental/habits problems that need more work. She thinks more likely the latter than the former. But we'll see. Definitely going to be a bit more social in the next 6 weeks, we'll see if that shakes anything else loose in my headmeats. Much as I like my needler, my budget is a bit strained these days, even when I'm not buying fabric.

Also, a DCon friend has offered me a Reiki boost while we're there. Still very Reiki curious, but my attempt at going to the 'student practice session' failed b/c Hurricane Sandy. And then I just got distracted. *shrugs*


I'll probably put off all the grocery shopping (which isn't really that much) until tomorrow, b/c this evening a friend is in town and we might go hang out for a little while wit another friend. Possibly with fancy GF french macaroons. Which I probably won't try baking myself this weekend, since I'm doing other kitchen stuff. But some day, macaron. You too, meringue. Tho the last time I had macaron I got super dizzy, so today we'll see if that was a fluke or if almond flour hates my brain (I use almond *butter* in banana bread & brownies). A lot of gf-baking mommy bloggers are against almond flour, but I don't remember why. *shrugs*


I think I'm more or less off the strict paleo thing now, if that wasn't clear before. I can't keep up strictly with a crazy-rich-ppl diet. I'll happily use their recipes, but with ingredients and equipment that I can actually afford.

And don't get me started about "OMG THIS RECIPE IS TOTES PALEO EVEN THO I FRIED OR BAKED EVERYTHING IN EXPENSIVE BUTTER NOW BUY MY COOKBOOK!" *sigh* Luckily I can usually sub in bacon fat or coconut oil when something needs a room-temp-solid fat. But when they're using full fat cow cream to make ice cream... wtf.

Mind you, todays macarons will probably have dairy in them, but at least the pills fix the tummy ache problem, and it doesn't mess me up for days like gluten (or we'll find out today). The shop also isn't claiming to be Paleo :-P

<3 Chrysilla
chrysilla: (galadriel lembas mix)
Yay, so my DragonCon room is settled, barring sudden disasters. And all my roommates want to do the Steampunk'd Babylon 5 cosplay idea with me, so I've finally started working on that costume. And I think I'll work on *just* that one before DCon.

Sewing stuff )

Between researching for my survival at DCon and chucking a large portion of my makeup collection, I've been on an anti-gluten anxious rampage for a few days. Ebil, ebil gluten )

Sadly, Ima back to normal brain fog levels today. Not sure why. Maybe the starchy carbs aren't working anymore, maybe its the suddenly-storm weather going on in NYC today and tomorrow. Or b/c I accidentally got shampoo in my mouth last night, cuz I ain't perfect.

I also had hummus on Friday and Saturday, for the first time since ... September? Are chickpeas giving me hangovers now? Ugh, I hope not.

Today is begrudgingly my 2 year anniversary of "Noticing I Might Have CFS" so... um... yay? Also, I think it was early July that I had the migraine from hell that got my old doctor to send me for an MRI. Fun.

I think it was June of 2012 where I freaked out on how horrible I felt overall, and finally exclaimed 'FINE SEND IN THE FAITH HEALERS WAAAARGH.' Instead I got into acupuncture, and the needler, and then my new doctor, both recommended I try the (badly named) Paleo Diet to see if I had any food sensitivities. Which I did. And I started to feel better, tho in stops and starts, until I crashed again around January. More stops and starts, and I'm mostly sure that today I'm better than I was last June, so that's good. I'm not great, but I'm better than I was.

Weight & Body Image )

Tho also b/c of that discussion online and in my head, I realized I had weeks of food tracking data written down in my notepad that I could plug into an online calorie counter to see what's up. I've been tracking food by weight, more for financial than health reasons, b/c of wanting to try and stay on a grocery budget. And also in case individual foods cause weird flareups/reactions. And to see what happened. Counting calories is just too abstract for me, and requires too much work to track and count everything via internets. For weight I just use my kitchen scale.

It looks like I've been bobbing around 1800 calories per day pretty steadily, usually with 2-2.25 lbs per day. A bit low on carbs, but fat and protein in normie ranges, and the low side of normal for fiber (but too much of that messes me up in unhappy ways). On the other hand, that was just last week, when I was reintroducing starchy corn chips. Will work on earlier data later.

Am still unsure of what was going on with last week's energy spike. If it was the starchy carbs, will that help me indefinitely, or just for a little while before I crash out again? Am I just re-contributing to a chronic/adrenal fatigue relapse? Maybe I just need something a bit easier to digest, and thus 'processed', b/c I'm still healing off years of gluten/dairy abuse on my insides, and 5oz of rice at lunch + 1oz ricecakes at dinner wasn't enough.


I think I might also take a break from acupuncture in July, just to see what happens. I felt better last week (maybe?) without a needle appointment, and I continued to feel awful from winter thru spring with regular appointments. If I hit another "OH DEAR GODS HELP ME" point I can always call them and make the earliest available appointment, having learned my lesson.

<3 Chrysilla
chrysilla: (galadriel lembas mix)
So this weekend was even less productive, and even less satisfying than the previous. Was two-weekends-ago with all the binge cleaning just a fluke? Meh. I am exhausted today, and not sure how I'm gonna make it through the week. Meh!

Chores )

Teh healths )

As for work, today I've decided to be more resolute in focusing on the parts of my day-job that are actually quite nice for someone with CF. Mostly that it requires me to sit on my butt for hours at a time, and doesn't tax my brain with too many projects at once. Also we get really long lunch breaks here. Yay?

I've also put together another seed bead embroidery project, to add weight to another one of my jersey skirts. Its spring break, so there may be a lot of slow days on the circ desk, and some of my headaches seem eye-strain induced. So less computer time = good.

Fantastic Fiction @ KGB is Wednesday. Would like to go, but am worried about potential awkward at dinner. But the bar usually opens at 6, and I get off work at 5, so I'll probably try to eat my own dinner at the office and then hope nobody minds if I don't join the table-share at the restaurant. But I may also run out of steam by then and have to go home after the readings, so who knows.

Sunday I'm having an early Easter dinner with my family in NJ, b/c they're going away Easter weekend, but so far the plan is to just order from Outback Steakhouse. And, um, I don't know how good they are for my issues yet. But Ima try to bake my gf/df brownies to take with me this time, so I won't feel so bad about missing out on the traditional chocolate bunnies.

<3 Chrysilla

Today's Health Rating:

1-Horrible
2-Thud
3-Meh
4-OK
5-Yay?
6-Yay!
7-Old normal, YAY!

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