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Scheherazade in Blue Jeans
freelance alchemist
Here is a small update on my body, inspired by me crying angrily in… 
19th-Jun-2012 11:59 am
Oh, bitchcakes.
Here is a small update on my body, inspired by me crying angrily in the bathroom a little. Two things.

1. Today's attempt at painting was stopped by a set of myoclonic jerks. It's okay, we have white paint to cover up where I got the blue paint, but still, frustrating, and it means no more ladders for me today and painting is a bad idea for the rest of the day anyway. So I was poking around online about simple partial seizures, which is what the jerks are, and guess what else is simple partial seizures? The dizziness and vertigo I'd been assuming was due to my body changing the way it processes my anti-seizure meds. And the sudden severe nausea I'd been having a few months ago. Classic example of me looking for what's wrong in all the wrong places; it was the epilepsy all along, probably.

Which means that my seizure control is probably not nearly as good as I thought it was. And, since I haven't had much sleep-dep recently, this is happening independent of usual triggers.

I just get very frustrated. Part of setting up a new house is setting things up for worst-case scenarios - if the autoimmune stuff rages out of control and I can't do stairs, I need commonly-used items on every floor. I need the pharmacy to take the no-childproof-caps directive seriously. I need things accessible; I need to plan for failure while hoping for success. Which means thinking about failure a lot.

But I do not want to assume failure. And I fight for success. Hence trying again to paint the bathroom. Hence struggling with the can opener for over a minute with Judah standing by sneaking glances over at me.

What's hard is that I've been stable for a bit and I feel like I'm deteriorating a bit, and even if it's only a little bit, that is scary.

2. I've been having allergic reactions to raw tomatoes for a while. Make my whole mouth itch, ugh. Eggplants, too. But I was fine with cooked tomatoes, which isn't uncommon.

Until last week.

A dish that was nothing but chicken and pasta sauce had me feeling like my whole face was on fire, complete with mild swelling of my eyes, et cetera. And a few days later, a beef stew with tomatoes made my face very itchy (not as much with the teary swelly eyes). (Also I had a reaction last night to something without tomatoes, but it was a different reaction, and I think it was the lactic acid starter culture, which I think is what sets me off in buttermilk? I'm not allergic to butter or milk, but I am allergic to commercial buttermilk.)

So. Possible tomato allergy. That sucks enough on its own (no tikka masala?), but add to that the fact that I also can't have gluten, soy, shellfish, and any number of random less-common things (buttermilk, horseradish, probably citrus, et cetera). Tomatoes are in a lot of things. If this is for reals, it is a pretty big dietary restriction.

And if I have a progressively-creeping nightshade allergy... I don't even want to think about cutting potatoes from my diet. I AM A POTATO-DEPENDENT ORGANISM.

So yeah. This is where I am this week - just feeling very trapped and angry about my body. I will find a way to deal, because I have to. I am just acknowledging that I have an anger right now.
19th-Jun-2012 04:05 pm (UTC)
Big (if you want them) virtual hugs for you right now. You are superheroic in your ability to plan for and cope with stuff, and it will be sorted out and worked through, but I'm sure the trapped feeling suuuuuucks.

(Reminds me of how I was feeling with my increasing and weird vision problems and semi-debilitating chronic pain a long time back. Ugh. But I didn't have seizures to deal with.)
19th-Jun-2012 04:09 pm (UTC)
Dizziness and vertigo?
Well, shit.
I was assuming it was that old combination of cerebral palsy and fibromyalgia.
I mean, it still could be, but I should probably add simple partials to the mix. Whee?

Thank you for posting about this. I shall contact my neurologist and my SSDI lawyer - my hearing is in three weeks (HOLY SHIT THREE WEEKS TO THE DAY OH FUCK AUGH and now my husband is singing "Que Sera Sera" to calm me now, aww)) and this is good to know.
19th-Jun-2012 04:12 pm (UTC)
Good luck at your hearing! I need to apply for SSDI again. Just so much argh.
19th-Jun-2012 04:41 pm (UTC)
Thank you. Everyone says I need to stop worrying, let go, and just let it happen. Even people who read Tarot for me have all said the same thing: You did everything you possibly could, now just wait, because you will be fine. Also, that day is the day I am fully allowed to let the masks fall and completely fall apart and lose my mind. Which I will regardless. I've never been in front of a judge. I'm still terrified.

I think that reapplying is a good idea for you, since you really have so much argh happening; I wish you luck on filling out those damn forms! Nobody likes filling out the forms. *hug*
19th-Jun-2012 04:22 pm (UTC)
I hear you.
19th-Jun-2012 04:22 pm (UTC)

19th-Jun-2012 04:32 pm (UTC)
I read this.


Edited at 2012-06-19 04:32 pm (UTC)
19th-Jun-2012 04:34 pm (UTC)
*leaves a pebble*
19th-Jun-2012 04:45 pm (UTC)
If I couldn't eat potatoes anymore I... I... it's just unfathomable. Irish people need their potatoes!
19th-Jun-2012 04:50 pm (UTC) - Oh, also...
I just remembered that vertigo and dizziness are a common symptom of fibromyalgia (you have that, right?). I get it all the time. I'm a little spinny right now, even (whee! no, wait, the other thing.) Hopefully your neurologist can help you pin down what's causing yours.
19th-Jun-2012 05:02 pm (UTC)
(Deleted comment)
19th-Jun-2012 06:48 pm (UTC)
Ugh, so sorry to hear that, hon.

If you want some connections to folks with some of the same allergies (specifically the nightshade one), and/or a weird and hard-to-handle set of food restrictions, I'd be happy to introduce you to a couple of friends of mine.

Edited at 2012-06-19 06:48 pm (UTC)
19th-Jun-2012 07:09 pm (UTC)
I'm sorry you have to learn to deal with more stressors. I have a good friend, an italian, who is allergic to tomatoes (also strawberries as they're apparently related) but either are ok if they're cooked at least 8 hours. So he can make homemade sauce and be fine, which may give you access to things you want. He says a fast simmer is necessary so most crock pots aren't hot enough - on the stovetop in a heavy bottom pan with regular stirring so stuff doesn't burn.
19th-Jun-2012 08:40 pm (UTC)
d'you want my recipe for Alfredo sauce, so you can put it over gf pasta?

Sorry you have such nasty ick to deal with.
19th-Jun-2012 10:07 pm (UTC)
Attention, 'song's body:


That is all.
20th-Jun-2012 12:01 am (UTC)
*gentle hug if you want it*
20th-Jun-2012 12:58 am (UTC)
I'm so very sorry. Reading this entry made me hurt for you. I wish I could something, anything, but for now, I will pray that tomorrow and everyday will be better.

As another person who experiences seizures (dammit), I know how frustrating it can be to have it under control...and then nope, dammit dammit all, you don't. I wish that I could channel and acknowledge my own anger. I have spent far too much time feeling sorry for myself, and I do acknowledge that this has to stop.
21st-Jun-2012 12:59 pm (UTC)
:( x 1,000,000
2nd-Jul-2012 04:25 pm (UTC)
Sorry it took me a while to get to this -- I wanted to post something thoughtful, and with guests and all I've been really attention-scattered lately. But I did read this, and I have a lot of sympathy. I've been in similar positions with my own disability (not sure if I want to post about that or not, I've gone a few rounds with that lately) and it is scary to stare down the idea of losing function. I hear your anger and frustration and it sucks that you have to deal with all that. Science is awesome, but sometimes biology is just bullshit.
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