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: (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: HUGS! (HUGS!)
Life, or something like it, continues.

And Ima start keeping track of Accomplishments )

Am more than a little annoyed that this time last year was my most active time of 2012, but so far I've been mostly stuck in my old pattern of "want curl up in ball and hide". On the other hand, last winter was a lot milder.

Oh, and back then I also thought the CF thing had come from a mono infection, b/c my doctor found antibodies. Apparently 90% of adult humans have those antibodies, whether or not they remember having had mono, evar. Oh, Dr. Lame :-P

I'm still having more good days than I used to, but I seem to be on a decline. In the last week and change I'm having trouble getting to bed on time, I was a lot better at that after the new year started, and right after the year's first S.I. The lack of sleep seems to be making my life suck, tho.

Quite a lot of my energy goes towards advance-planning, but I'm not sure if this is helping me or adding to teh issues. Taking an afternoon/evening each weekend to do all the cooking for a week of lunches. Planning a week worth of work outfits on the weekends so I don't have to think about it in the mornings. Packing a bead kit for my lunch days at work. Etc.

Am getting more curious about what happens when I start treatment for sleep apnea. But not curious enough to remember to call them and set up an appointment yet. *sigh* The brain fog is still rather relentless. But I hope 'treatment' is more than a patronizing lecture about my weight :-P The CF started *before* I got chubby.

Tho now that I think about it, the CF started with the overdose of S.I.'s in the Spring of '11, and those are by nature a respiratory infection. It would be interesting if that constant chain of illnesses did something to F up that part of my body in a more long term (sleep-apnea) way. Not sure if that's how it works tho.


Wicked Faire is in little more than a week. As this week drags on I'm less and less happy in general, but I'm framing WF as a reward for weeks of annoying grogginess. Hopefully it will be fun enough to make that true, and luckily I have Pres Day off to recover.

This weekend I'll be cooking two work-weeks worth of lunches at once, plus prepping my WF food stash. All of that shopping can be done in my neighborhood, so hopefully "Shrodinger's Storm" won't crimp my plans too badly. Will probably try to get some of my groceries tonite, tho.

<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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