chrysilla: HUGS! (HUGS!)
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
chrysilla: (bb accounts)
Wondering if quitting my dayjob for a lower paying work-from home thing (creative + patreon, or freelance research etc) would be better or worse in the long run.

Given research about EBV without a doctor's guidance thus far (urgh), it seems largely the virus gets reactivated by stress. But ... how much stress? One really bad day? A sinus infection? A constant low drone of stress? Furthermore, many people seem to do better at managing it (or curing, according to some anecdotal accounts, meh) on various clean/elimination diets plus daily vitamin supplements and/or occasional vitamin megadoses during active-virus time. And none of that is ever covered by insurance. So... if I quit my dayjob, would I need less expensive healthcare? Or would it only help for a short while, like with everything else I've ever tried, and the virus will just reactivate itself again for no clear reason?

breaking it down )

So... very much a gamble. Could pay off, might blow up in my face.

What I really want right now is to just get an EBV *reprieve*, even if just for a few months to a year. Then I can get my creative stuff off the ground and see whether or not I even *could* make enough $$ from it to quit my dayjob, and then I can make a plan to move from one to the other a bit less jarringly. Or the +ment bonus from having those projects work out could sustain me enough for the dayjob.

I think most ppl who would tell me to quit my job without much forethought probably have waaaay more health privelidge than I do. Meh.

<3 Chrysilla
chrysilla: (b5 one of those days)
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
chrysilla: (clothes)
Spent the weekend very stressed out about a neighbor situation, I think my body retaliated by not letting me sleep properly, so today there's extra brainfog and an odd kind of ... sensory overload. Sounds are too loud, lights too bright. My tummy was cranky this morning, but got better, and that's all normal for me.

But this time stress meant sewing, so instead of just working on the unfinished projects I cut two new ones, then finished one of each set. Pretty much the new things I needed for Arisia.

Chronic Illness Cat, manyblues dress )

Pleather + empire waist )

Also cut out one of the cardis I want to make, red flannel in that bell sleeved B4989 I like so much, without expecting to finish it over the weekend. This way I have something to pick up and work on if I have time this week, although I almost definitely won't have time until next week. Hopefully that flannel doesn't unravel easily :-/

Still have that black corduroy skirt to hem, too. And soon I'll cut a skirt out of the blue corduroy, but not the jacket for now. Did both at once with the black corduroy, and not sure I want a second jacket like that. I also think I can get thru more stash if I focus on simpler projects for a while. A couple more of B4989, several tank top blouses made from linen leftovers, and especially the knit projects I have lined up. Yay, no ironing.


In other news, Arisia is next weekend, yaaaaay! And I get to take a train instead of a bus to Boston, YAAAAAAY!!!!!

I'm building a Giovanni for the MES Cam/Anarch game, and the players are almost suspiciously friendly and excited for new blood. But ... they're Giovanni, so I guess that makes sense? The clanbook is a lot of fun so far, but I still need to put all my stuff in the DB before I go. Hopefully tonite. And look over the rest of the Arisia schedule and figure out what I'm doing and when I'm costuming. Might just bring these two 'costume' dresses with me, and do warm/casual for the rest of the weekend, b/c it will be cold and I'm not at the host hotel. Although a lot of my costume stuff *is* velvet... hmmm...

Until then, there's an IRC game I want to play tomorrow, and MES downtimes meetup Wednesday. Will probably bake brownies on Thursday, and so far eating almond-butter baked goods hasn't hurt me, so yay for bringing +10 Brownies to con.

Will deal with the kindof awful real world stuff, and all the sewing, when I get back :-P

<3 Chrysilla

NO-vember.

Dec. 2nd, 2013 08:25 pm
chrysilla: (b5 one of those days)
November was pretty much a wash. Just ... ugh. One random illness after another, and 2 of 3 were medically induced.

Sick After Sick )

So yah, that wasn't fun. Wednesday I was able to go back to work and eat normally, but from there I went straight to NJ for Turkey Day. My immediate family picked up some nice gf options for me, and at the extended-family party on Turkey Day proper my aunt who has Celiac came out so there were more gf options. Another relative mentioned that Askhenazi Jewish ppl and Irish ppl both have high rates of Celiac, and since that's all of my genetic heritage on Dad's side things make a bit of sense. And then came all the family gossip on old age, estates, etc, and now I freaked out enough to want to start investing my extra $$ more aggressively in 2014. Yay?

And then Black Friday happened, and I participated, but I don't thing going to a NJ craft store on Friday afternoon was so heinous. We drove past the malls, very glad we weren't involved in that craziness. And I picked up materials for *making* presents, so my conscience is clear.

And the BPAL binge happened. In which I can't tell if I have a problem... )

On the other hand, comparing hoarding BPAL to hoarding fabric has made me reframe my costuming plans a bit. In that I'm not sure I want to buy fabric and sew it anymore. Or tackle the giant costume plan I had for DCon. But I've also been sick for all of November, after a crazy sewing binge, so Ima give it a few more months. At least I'm sticking to my plan to not buy new fabric until after January. May take out a jacket pattern during Winter Break, or not, will see. I think sewing is something I should only do in the summer, when its too hot outside to think straight anyway.

A couple weeks ago I had the sudden, serious notion to sell all of my jewelry supplies on Etsy and cash-out of the business. Of course, that would be as much energy as making and selling my own jewerly, so probably won't happen any time soon. But the thought popped up. If someday I have the energy for jewelry again, but I still don't actually want to make any, then I may start working on that. Again, I've been sick for weeks, and I tend to make life-cuts when I feel stuck and frustrated like this. Usually its low key, like throwing out clothes that don't fit me, or empty bottles of hair products under the sink. I hesitate before shutting down a business that took years of my life (and a TON of credit card debt :-P) tho.


That reminds me, I finally cleaned up the bathroom this weekend. Tossed a ton of recyclables and took out a shelving thing that wasn't working in the space. It will live on the balcony until I figure out what to do with it. So that's good. Unfortunately, after the normal weekend chores were done that took up the last of my energy. So I had just enough spoons to overspend my spoons. Thus, I don't feel that much better today than I did for most of November. But I do feel a little better. And November is over, lets see if December is healthier.

And my Dad was nice enough to take the rest of my Discardia bin back to NJ with him, where charity groups will pick stuff up from their house when called. So I've got that little 1.5 x 2.5 bit of floor space back again, which is bigger than you'd think in such a tiny apartment. So the Chantry feels a bit neater overall this week. And I smudged with a nice incense blend I made up, cleansing and protecting. Never used sage before and I have definitely been missing out :-)


While I accomplished many home-things over the weekend (I don't think I've ever crossed out all but one thing on my wknd to-do list, OMG, no wonder I'm tired now) I was very frustrated that I didn't *go out* to do anything. But again, sick for weeks. And Saturday my tummy started trying to reestablish its boundaries and... urgh. So it was probably for the best that I stayed in.

This week, assuming I start getting some spoons back, I'd like to do some of that going-out other ppl talk about. I'm bad at organizing things, so I may default to an improv night. I'd really like to finally see Thor 2, so I might do that right after work on Thursday and then go to SFC after. Or maybe something else will come up. Its weird tho, the events page on my FB account is pretty thin for December, which everyone always says is overbooked.

Sadly this month's Browncoats is a holiday party on LI, so between the tired and the gluten I'm not going to make it. But an old pagan buddy is having her Yule party in the West Village, so that will be nice. There will probably be more holiday parties eventually, but sadly I can't do one of my own anymore. Its just too much work and not enough space. But I do get a solid two weeks off for Winter Break, so I hope I'm healthy enough to go to other ppl's parties this year.


Was looking over con plans for 2014, and after the PA trip earlier this month I'm not sure of ALL THE CONS is such a great idea now. On the other hand, I was already a bit sick when I went to PA. I'm already booked and paid for Arisia, so that's a go. And I'm still leaning towards Dexcon in July, even tho I tend to be sick on 7/4 (then again, I'm *home* on 7/4). So if I just add those to the year, that's three times more cons than usual. Otherwise, I think it might be more worth it to just make an effort to be more social and geeky in NYC, where I know all of my gluten-challanged food options, and I already have a train ticket and a place to sleep.

Maybe that would be a good re-framing exercise. "Am I too tired to go to this thing that's out of the house tonite/this weekend? Well, would it be more or less taxing than going to a new convention in another state?"

<3 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: (bb accounts)
Just thinking about how my various 'issues' are accidentally working together for my betterment in odd ways.


Problems with dairy, gluten and other foods => Waaay less eating out at restaurants than I used to.
-5 Social Life
+5 Budgeting


Realizing the Paleo diet was hurting me in some ways => Can have rice and corn chips again, which are (sadly?) both cheaper than meat and veggies.
+5 Spoons (Health/Energy)
+10 Budgeting


Too tired to cook ALL THE THINGS from scratch => Buy easier to cook Chrys-friendly noms, less expensive overall.
+5 Spoons
+5 Budgeting


More stats! )

So one gigantic theme: what's awful for my social life seems to be awesome for my budget. "Keeping up with the Joneses" really is awful, even outside of the suburbs. When I'm feeling better in the autumn, need to devise less expensive (and less glutinous) methods of hanging out with friends.

And its still ironic that trying the Paleo diet decreased my restaurant spending to almost nothing, but made my grocery bills skyrocket out of proportion to the restaurant spending.
chrysilla: I rocked out at Mutant Peep Nite (Hedwig Peep)
The latest life-yuck has inspired me to be more focused in dealing with my fatigue problem, but at least now that it might be a sleep problem its easier to work on that one thing. If doctors don't actually know what is causing this brain wave abnormality, or what could make it stop, I have no reason *not* to experiment on myself with fewer side effects :-P

So this is me, trying to maximize my spoon savings, between doing things ahead of time on less active days (weekends), thus giving myself permission to not do *anything* at the end of active days (weekdays). And some hacks good for everyday. All ultimately geared towards making myself not too distracted or wound up to sleep at night, while keeping up with my daily survival.

Hack & Slash )

It also makes me sad to think that for me, more balance = less seeing of friends and fewer group activities. But maybe that's just the sacrifice I have to make for now, and if I manage to jumpstart my spoon supplies, and then my personal projects, my social life will be more sustainable. And at least I can still talk to friends via FB... when I remember to reply to their messages. *sigh*

Actually, its not like I see that many people very often anymore, its just that now I've decided to stop feeling guilty about it. Srsly friends, there are things about my daily life problems I haven't explained in public b/c I didn't realize how serious they might be. And when I did, I didn't want to freak ppl out. But even if they turn out to not be that serious, I'd still like them to stop, and I may have to miss some shows and/or parties to ensure that happens.

I will happily 'like' all the FB photos of your adventures, but I can't have any more adventures of my own until I fix this.


And I will probably be taking stock of if/how this is working out around my b'day, mid May. So 6ish weeks from now, seems good. If things aren't working *at all* by then, will have to re-hack.

<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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