Queen of the Cat People

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 )

Today it's the perfect gloomy trenchcoat+boots kind of weather. So that's lifting my spirits a bit.

Mixed weekend, tho. ( Read more... )

After paying bills I ordered some supplements for next month's budget, including "NAC" which is the latest magical EBV cure I've heard of. Its a precursor to the body's fave antioxidant called glutathione (GSH) (which just gets digested if taken itself), but while helping the liver and eliminating free radicals = good, I'm not sure how that helps chronic EBV when there's no die-off stage like with a bacterial infection, and thus not much need for detox. Tho there are also claims that it can inhibit/relieve inflammation responses, which *might* be why it sometimes helps with mental illness. But might as well try it, right? Who knows when I'll ever get to try LDN. I'm just losing faith that anything otc can cure my brainfog.


Guess I'm sticking with Amazon Prime, even if I lose the student discount for not being enrolled for a couple semesters. It seems to be paying for itself, tho the researching of individual supplements and products can be a bit overwhelming sometimes.


Not sure about scheduling game this month. Since my fatigue has 'leveled up' (and not the rest of me), I'm not sure I could get thru a weekend with running my own game, and still have energy for work the following week. Which would mean two months in a row off from game, tho. My energy levels are just too unpredictable :-(

<3 Chrysilla

In spoonieproblems news, chatted with the needler last night who isn't sure #EBV has a 'die off' stage like a bacterial infection, b/c viruses are different, and don't have cell walls full of toxins that flood the body as the infection is fought off. She thinks I may just still be adjusting to the new supplements. Its technically a herpes virus, and herpes patients don't get die-off reactions, right?

Also, since EBV lives in the white blood cells, and it can take 3-4 months for the wbc's to cycle through, the Lysine will definitely help in the long run, wearing the virus down and then preventing future flares, but it won't feel like a quick fix.

I wonder if the EBV is not so much fighting back against the new treatments as just being a jerk due to the high levels seen in January :-P Otherwise, no explanation for the recent uptick in fatigue. Unless the early spring has just reactivated my sleep disorder to ridic levels.

Slept pretty well again last night, so that's good. Still not sure if I can/should go out this weekend tho. And waaay better on Wednesday night after a meditative epson-salt bath.

My needler also gave me good tips on how to schpiel my psych into prescribing off-label LDN this Monday: autoimmune -> inflammation of the central nervous system, which *might* indicate why despite Strattera, Wellbutrin, and acupuncture the f'ing brainfog just won't f'ing clear up.

Brainfog is definitely my most hated symptom. Even if I was too tired to get out of my office chair, I think I could accomplish some small part of my goals if I didn't have this problem :-/ Typing is not very draining, I don't think.

Today I'm starting on L-Lysine, tho I'm not sure I haven't taken it before, from the good doc I saw back in 2012? *shrugs* Supposedly it shanks EBV, here's that theory in a nutshell: http://epstein-barr.blogspot.com/2005/11/positive-results-with-lysine.html
Further googling repeats that theory in more complicated explanations. Some sources say I should be taking 500mg three times a day, but Ima start with once.

Tried increasing my vitamin C from 1g to 2g's last weekend, but then had a very painful IBS flareup for no apparent reason. So I'm back down to 1g, and trying the lysine instead. Might try 1.5g in a few weeks.

I should post a list of all-the-supplements I take, and then post new lists as things shift and change. Log how my life improves or doesn't.


Energy levels are not so much increasing as becoming more spastic or even bipolar (not mood wise tho, phew). Some weekends I get a ton of housecleaning done, or I successfully run a session of my tabletop rpg for an evening, and other weekends I can't do more than doze on the couch listening to music I already know*. I've had problems remembering to eat enough on weekends, but even with that problem fixed I'm still having trouble with this. I feel like I'm looking for one more (magic?) pill to put me over the edge of healthy, but I'm not sure if that's delusional at this point.


The hunt for a new doctor continues. ( Read more... )

There is an EBV patients group on FB someone on twitter pointed me to, but I had to shut off the auto-updates b/c of the antivax nonsense. Just... no.

That's really the worst part of this. I like peer reviewed science. But unfortunately I'm not dying fast enough for medical science to give a crap yet. To the point where I can't even find a doctor to treat me for reasonable fees. So I have to trawl the loonie fringe sites for self-treatment ideas. Ugh.


And that's the spoonie news for this ... week? Weekly updates would be good. Remembering to actually track that often would be a miracle tho.

<3 Chrysilla


*FYI, there is such a thing as being too fatigued to listen to new music, or read a book. Or watch a new-to-you movie. Or watch a new episode of a tv show you already know and like. And I've been this way for almost 6 years now. If that *wasn't* the case I'd be a nerd trivia master by now :-P

Got it checked and double checked, and I'm having an active Epstein Barr infection right now. Since the last time I was tested for it was 2011, and that doctor explained it really badly ('andtibodies' rather than 'you have it RIGHT NOW') its very possible that this is what's been causing my CFS problems the whole time. Hard to say for sure tho, b/c no data.

Figured I'd make one blog post about it, to edit/add to when I remember more through the brainfog, rather than a zillion FB posts.

Current theory: bad digestion -> borked immune system -> EBV flare -> bad digestion -> borked immune system -> EBV flare -> etc. Feedback loop of epic fail.

( Five years of suck )

For right now the plan is more tummy treatments and vitamins to strengthen my immune system, some new and some increased doses based on what I could find on the internet, while I wait for my new GP to find me a specialist. I was already planning to do a diet cleanup in February, so that was convenient, tho now I'm considering full Paleo again. Or mostly full, I need chocolate. Also, if stress is a trigger, its about f'ing time I started meditating regularly.

"Think Happy Thoughts Dammit" has been explained to me as a treatment by a fellow EBV-spoonie, but Happiness can be expensive in NYC. So... more Netflix? Even when I'm too tired to watch a new movie or tv episode (yes, that's a thing). I'm already seeing my psych next week, so I'll see what he thinks. I'm already trying a smidge of Wellbutrin for a 'lift' in addition to Strattera (my psych's had good patient experience w this), but while I'm not feeling negative side effects I'm also not feeling benefits.


I guess there's a chance that EBV could shut itself off as randomly as it turned itself on, maybe with permanent lifestyle changes, but I dunno. When I thought it was hypothyroid, I figured I'd just have to add an extra body-chemical and things would get better. Now there's an evil virus chilling in most of my cells, which can wake up whenever it wants, and leave me borked for weeks even if it goes back to sleep.

<3 Chrysilla

First day of classes at work, so every time I go to type or read something a patron turns up. Very bizy. Although not very crowded, b/c a large part of the student population is probably still snowed out of NYC as of this weekend. But everyone who's here is definitely making it sound like a full house, b/c rampant coughing.

Tbh, the blizzard didn't alter the path of my life while it was happening. ( Housebound weekend, already in progress. )

This will probably be the last weekend I can get away with not doing any homework (spaced out and forgot, whups). Starting in February I'll have one assignment due every week, so best to work on those during the weekend. Found out from the prof I had last semester that he did put down a final grade for my transcript (A, woot) but unfortunately its not showing up in the whole system. And he didn't give grades/comments for the individual projects b/c he was going to do that later. Well... its later? And maybe this semester I won't wait until the last minute to do most of my assignments :-/ It just feels very overwhelming, even after last semester wasn't so bad.

Arisia gave me new drive to work on my podcast again, so... maybe this time it'll last? Writing is free, luckily, unlike sewing. Will try to finish up the last of the cut-out sewing projects next weekend (when not homeworking :-P), and then leave the fabric stash alone for a few months. Then I will make myself go out with ppl a bit more, and otherwise work on creative writing. It would be nice to finally get this project off the ground now, so if it fails miserably I can doubledown on being a growup, getting my degree and trying for a better paid but still boring library job.

And b/c everyone else in the Domain is going to Dreamation or something, the local NYC larp got moved to the fourth weekend when I'll already be in Boston for MES. *shrugs* Maybe I can get this geeky project off the ground during my two month vacation from the local game?

It continues to annoy me that I have plenty of time in which to work on both school and creative projects, but CFS means I'm too tired. If I remember to work on things I'm too spaced out to concentrate. But I'm seeing a sleep-doc next month, along with some other docs, so maybe something will work? The adrenal-testers cashed the check, so maybe someday I'll get those test results too. My thyroid is on the low side but still in normal ranges (for other ppl), Ima ask my PCP if he can do *something* to treat that anyway if other docs can't help so much.

<3 Chrysilla

Well, its certainly been a while. I guess I lost touch with my bloggy thing b/c it was a thing I mainly did on Monday nights at work, and at the beginning of 2015 I lost my Monday nights for several months b/c of office crazy. A coworker suddenly left, and the supervisor made weird decisions about changing everyone's schedules to cover all the desk shifts. By the time I got them back (August?) I'd fallen out of the habit, and then I started grad school and Monday nights were for homework.

But its a new year, so that's a good time for taking stock of the goings on. Especially as I have a whole extra hour to fill tonite, yaaaay :-P

( Health 2015! )

( School 2015! )

( Sewing and Jewelry 2015! )

( Finance 2015! )

( Geekiness and Travel 2015! )

( Plans for 2016! )

<3 Chrysilla

Hooray, it is time to distract myself from awfulness with much pictures of my accomplishments.

It turns out I finished 11 sewing projects in January, so that's awesome. Mostly smaller projects tho, I followed the example of the 'debt snowball method' and got a bunch of small stuff out of the way to clear away the stash. And with mostly familiar patterns, and knits, so also quicker projects.

Ironically, I'd lapsed on keeping up with my feedly blogs, and there was a goth-homemaker blog where I could have shared that in-theme-ly last month. Whups. But I would have posted them here anyway :-)

( Tshirts, cardis, pleather pants, and a skirt )

And the epic adventure in bag making, which has apparently super-impressed my therapist:

( Pleather backpack )

Next in the hopper- turning a lot of leftover linen (b/c the linen store only sells whole yards unless its a remnant) into a variety of the tank top blouses that I like. Though I've had to add an inch to the bottom of the bodice, otherwise its just too low cut. And nip in the sides a bit. But it works really nicely in linen so far. Tried doing the regular fabric-tubes for the straps on a red one, but gave up and luckily found ribbon instead. But then I heard of another technique for that which I should try. I could really use another knit cardigan, and/or longsleeved tshirt in more than one leftover color, but those are new patterns I haven't tried yet.

Also debating whether I should start making lots of drawstring bags, of varying degrees of complexity, to get thru my remnants and scraps. Or just toss the scraps, and any remnants I don't actually like. I could quilt, but that just opens a door to buy MOAR STUFF later, and there's such a wide variety of fabric weights that I'm not sure it would work out. But there's a lot of remnants I sortof inherited, and am unlikely to ever use, so why not toss them?

I've been researching jacket tailoring, to figure out how to stop screwing up collars and jackets, before I start a muslin for the blazer I keep trying to perfect. Might have to just start sewing sleeves by hand, but I'm not sure which would be more annoying. Debating whether or not to donate the collection of old jeans, b/c when would I actually wear a denim blazer? Why recycle when I can just donate to the bin in my basement?

<3 Chrysilla

So... yah. That!

Did a mostly OK job of keeping up on sleep until Wednesday, when I did the gamer downtimes meetup and stayed out too late again. Tho in my defense the trains are screwed up. Tho I should have remembered they were screwed up from Monday nite. *shrugs* I think I got to bed on time Thursday nite too, after much packing and prep work, don't quite remember.


A lot of Arisia is still a blur. I was very worn down, brainfogged, and extra-zombie-fried for most of it, so the happy wasn't as cathartic as last year. However, it was really wonderful hanging out with my local Boston friends as ourselves (rather than as larp characters), and likewise seeing friends from elsewhere and, um, NYC whom I don't see very often. B/c leaving the house is hard. Very much calling this a win, Arisia was wonderful even though my brain was broken. Spent Monday having lunch with some of them, then meeting up with more in the gaming room for one final huzzah over CAH. Despite being brainfogged all weekend I still wasn't prepared to leave. Definitely going back next year :-)

( More Arisia! )

I do think that I'm a bit past the point of "Are you sure you don't secretly *want* to be sick?" for chronic fatigue, sinus probs, etc. NO. I DO NOT. I'm still looking for that bit of leverage to get out from under the rock, which I think I did find in MES last spring, but then my sinuses rebelled. Will pick up that acupressure book and try a few more new things, some of which got derailed in the past (oh, you wanted to go to the reiki open circle? here's a hurricane instead :-P). Maybe if I can scrounge up the budget I can start doing acupuncture again, maybe just monthly. The BrainSync page sez I need to use their special expensive sleeper headphones, but I can get one of their MP3s on a gift card and try that out via computer speaker, at least for the first time. I have a whole new pinterest board filling up with the newagey side of self-care and coping.


Tho coming back down to earth again, none of this will probly happen this month. Well, maybe some books b/c I have a B&N gift card. Its rather the opposite of what I was planning, but I've screwed up my regular monthly budget enough that I should probably just stay in and sew, and veg out, for the next couple of weekends. Not to mention that I seem to have shrunk so I want to try out some old sewing patterns to see what fits now. Also, stash fabric. And new patches. Sho many. I did laundry the week before con, so I should have the 'livingroom nook' open all weekend for fabric stuff.

There's IRC stuff tomorrow and Thursday, not sure if I'll be up for it. I really am just in the mood for moar sewing this week, maybe some email gaming. And I need to set up some Dunsirn connections now that this new PC is in the MES database.


Doing mostly OK today, except for that whole "Dude, what did I do last weekend?" sense in my brain. Monday night I got home around 8pm, Amtrak was 20 mins early and then every subway train was at the platform when I needed it (thankyee Eshu). Spaced out on the internet for a little while as I tried to figure out if I were hungry or should eat anyway, then eventually realized I could just go to bed. I was already down to cover the 1:30-9:30 shift at work Tuesday, so that left time for lots and lots of sleep. I did try to tarot, but that part of my brain still isn't functional either. Oh well.

And unfortunately I had to choose either baking brownies *or* making this week's lunches last Thursday, so I won't have a chance to cook again until Wednesday nite. Which means two Bareburger lunches are also going on the $$ tracker. My stomach's been ever so slightly upset by BB the last few times, so at least it gives me a chance to see if one item in particular is doing that to me. Yay? Today no lettuce, and still lots of spicy veggies, but I seem a bit better.

<3 Chrysilla

Not really up for full fledged 'resolutions', some kind of evil synergy tends to make most ppl's resolutions fail. But I have some plans that I may as well pin to the wall now? Year in review vs. Next year's forecast.

Crafty stuff:

( Jewelry stays on backburner as I work thru avalanche of fabric. )

Health stuff:

Was thinking of doing dietary tweaks again, but then I'm like, "what if I resolved to make my life easier instead of more difficult this year?" so nope. ( Focusing on sleep, and a couple other things. )

( Food stuffs. )

When they're done with the betatest: Flaredown! Missed getting onto the betatest b/c I didn't contribute to the indiegogo in time, but OMG I wanna play with that. B/c I am a data geek :-D



Gamer Stuff

I really can't do three larps in one weekend. I'm never awake enough to play Requiem effectively, and then I'm hungover the next day. And I don't even drink. So from now on just two. ( More rationalizations. And COSTUMES. )

Social Stuff:

I'm happy that the gamers have re-accepted me as one of their own, and happy that I was able to have some kind of externally-moving force in my life aside from work, but it wasn't supposed to be the *only* social outlet. ( Filling in the gaps, I live in NYC for crying out loud. ) So see, I have a lot of options. I live in friking NYC. Its really just a matter of feeling well enough to grab those options, or ignoring possibly false limitations and going anyway.


Travel

Not sure about adding tons of new cons this year. Arisia's next week, DragonCon of course (but maybe last consecutive year), *maybe* Dexcon but no other plans. The "Geek Escrow" savings accounts are working out really well, tho.

I do really like my Boston trips, and if I plan them long enough (like two months) in advance I can get cheaper train tix. So we'll see how that goes in February and if it leaves me energy for more fun outside of game while I'm out there. Not sure about traveling to other cities, not sure what Philly's MES group is like, but I've heard amazing things about D.C.



Finances

Still kinda suck financially, but I'm not destitute by any means. And I think I'll be able to max out my Roth IRA this year (b/c I can make contributions for 2014 until April), and putting my extra paychecks and IRS refunds in there worked out very well. And my Geek Escrow accounts *are* working out, so I had some good ideas that are working out. Yay for that. But in early fall I used my emergency savings like a credit card, and spent about a quarter of it, and refilling it has been slow going so far. Really have to figure that one out.

( Cris, pls stop buying stuff. )

Other Habits, good and bad

I have a bad habit of spacing out on the internet at home instead of getting stuff done, or going to bed on time. Sleeping, or vegging out on the couch, would be a totally passive activity. Sewing and cleaning would be totally active. Unless I'm in an IRC game, the internet is some uncomfortable place between active and passive, so I can't start something else and its very hard to just shut it off. I think its getting in the way of a lot of other things.

Will see what kind of measures I can take to un-internet while I'm home. Sadly I can't just turn off my modem like I used to b/c it resets all the passwords :-P

Along those lines, when I'm at home I'd like to be either entirely active *or* passive, so basically see above. Tired? Watch neflix on the comfy couch. Awake? Sew or clean stuff. No more zoning out on the internet until I miss bedtime.

Books are still a thing, right? I have a whole shelf full of new books I haven't started reading, and some of them have been there for *years*. I don't remember when I used to read them. Working on that.

I'm quite sure that music is still a thing. Got on Emusic again, b/c lots of gothy bands seem to put their music up there. So I can make a list from the podcasts I listen to, and gradually pick them up each month, maybe with a booster for my b'day. I have 8GB on my mp3 player, would like to actually utilize that space. Lets see if having a 'music allowance' works better this time around.

Thought of having a "Big Cleaning Day" once a month, not sure if that's a good idea. Might leave things to pile up and drive me crazy, then do everything that one day and burn out. And then what happens if I'm sick that day, or if something actually fun comes up? Meh.

Spiritual stuff... ugh. So wrapped up in the mundane that I don't really have the braincells left over for higher states of consciousness and intuition. Will try to keep up with the regular tarot forecasts, but the last couple months its been a lot of me staring at the cards and not getting it. :-/

And I'd like to 'journal' like this at least once a week. I keep writing novels on FB, and why do I need to do that when I can just record it here and publish it all at once? Maybe I'll more pointedly post via tweetdeck to keep my chatter short and sweet.



So... that's about where I am, and what I'm looking at. I tend to change lives every few years, I'd really like to start the next one please, but this one is very staunchly and unfairly holding onto me.

<3 Chrysilla