Queen of the Cat People

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

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

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.