September 18th, 2009



Happy birthday to sihaya09!

Happy early birthday to photognome and charlesatan, who advance a year over the weekend!

Still doing mostly well, save for the continuing oh hai hives. Been getting more exercise lately, which is a win for pain levels.

High School Football
Costs $6 per ticket! I don't think we'll be going to many games. Elayna had fun, though, pretty much ignoring the game and talking to friends except when she was actually playing. The band's game repertoire includes "Zoot Suit Riot"!

Link Soup
* Download the first 67 pages of murnkay's book!
* Ever wonder what the Lorem Ipsum text actually means?
* Kermit denies dating Lady Gaga.
* Dan Brown's 20 worst sentences.
* "The Ballad of Barry Allen".
* WiFi dowsing rod.

Daily Science
Using magnetism to turn drugs on and off.

Friday Memage!
Wearing: Green pajamas. Yes, still. I slept in.
Reading: Bleak History by John Shirley and And Then There's This: How Stories Live and Die in Viral Culture by Bill Wasik.
Writing: WTD, and debating whether to continue it another week; we've only raised half of what we need...
Planning: This is feste_sylvain's birthday weekend, and so I spend it with him. Much of it in bed. :) But also we're going to Yarr! Talk Like a Pirate Day cabaret tomorrow, and I'm going to RiverSing on Sunday.

Sick Hippo

Invisible Illness

Yes, this has been falling by the wayside - because I've been exhausted when I'm not busy. Blame the invisible illnesses!

And as I told feste_sylvain this morning, I'm in an interesting position with regards to the perception of my health and illness. The illness that was most visible is now almost totally invisible - I haven't used my cane in months, and I'm moving better now. This can lead to the perception that I'm no longer unwell, and ha ha no.

I live with multiple invisible illnesses. These include epilepsy, fibromyalgia, various interesting respiratory things, a whole passel of cormorbid conditions piggybacking on the fibro, et cetera - but for the purposes of this meme, I'm going to focus on the epilepsy, as it's less common. Here's a '30 things about fibro', so you can read up on that as well.

1. The illness I live with is: Epilepsy.

2. I was diagnosed with it in the year: 2003

3. But I had symptoms since: Unknown. The first seizure that was definitively witnessed was in 2003, but my mother likes to retroactively assume that my spacing-out as a kid was related. What leads me to think she may be right is that the reactions I had to certain medications in my teen years are very much in line with typical epileptic reactions to 'em, which is why they are never ever prescribed for epileptics. (A doctor went pale once when I told him what I'd been on then, seriously.)

4. The biggest adjustment I’ve had to make is: The loss of independence. I can't drive when I've had a seizure within the last six months, and most of the medications I've been on have robbed me of my ability to focus enough to drive safely anyway. It isn't just that, though. An example I gave to a friend lately: one of my friends wants me to travel overseas with him, to a music festival in Germany. And I cannot, because this friend will most certainly not be staying sober. Think about it: Before going anywhere with anyone, I must evaluate their capability of handling the situation well if I seize.

5. Most people assume: That if you just take your meds, you'll be fine. Not so much. All anti-seizure meds make you fatigued. Many of them brainfog you. Many have severe weight gain as a side effect. I've also had severe weight loss, I lost the ability to read for about two months, got double (and scrolling) vision, felt drunk, lost my balance constantly, et cetera. This is why so many epileptics go off their meds. With epilepsy, you are faced with the constant decision to cripple your mind and body like you're Harrison Bergeron, or risk seizures. Difference is that seizures can actually kill you. So every morning, every night, I take the pills.

6. The hardest part about mornings are: Taking the pills. See above.

7. My favorite medical TV show is: House. With the epilepsy plus the everything else, I entertain faint hopes that it's all tied together and is some marvelously rare thing that a brilliant diagnostician would see right away and all I have to do is not eat fish or something and poof, cured!

8. A gadget I couldn’t live without is: For the epilepsy? Low-tech: my pill case. Short-term memory issues mean I can't always remember if I've taken my pills. With my days-of-the-week pill case, I do not have to worry about accidentally double-dosing. (Also it's modular, so I can snap off three of its seven units when I'm spending the weekend out, say.)

9. The hardest part about nights are: Taking the pills. (Also I have insomnia, but that's comorbid with the fibro.)

10. Each day I take __ pills & vitamins: 9.

11. Regarding alternative treatments I: There really isn't anything for epilepsy. My most blatant seizure triggers are stress and sleep deprivation, so I have done everything I can to destress my life - I'm a lot less type-A that I was when I was diagnosed! And I'm careful about getting adequate sleep.

12. If I had to choose between an invisible illness or visible I would choose: Well. It depends on the illness! I wish there was some visible sign of my illness so people could understand why I'm not working, say, or why I can't do some thing.

13. Regarding working and career: I had to go part-time in 2005 due to the brutal side effects of my medications; I was fired a few months later due to that and missing work due to my shiny new tendonitis. I have not had a traditional job since. I did database population for a friend's startup, but that's about it. That and Wind Tunnel Dreams, and the stories and poetry I've sold so far. I am feeling well enough to take on part-time work again, I'm pretty sure, but full-time isn't really on the horizon, and may never be.

14. People would be surprised to know: How different types of seizures manifest - that smelling something that isn't there can be a seizure, too, for example. Me, I actively blank out, but I don't go grand mal. Most of my seizures are complex partials.

15. The hardest thing to accept about my new reality has been: The constant reminder of my mortality. Click here to read about Sudden Unexplained Death in Epilepsy and status epilepticus. Pull quote: "Our mortality rate is 2-3 times that of the general population, between the seizure-related accidents, the suicides, the meds getting screwed up, SUDEP and status epilepticus." That suicide rate is 13% higher than that of the general population; Ian Curtis of Joy Division is a famous example. Add to that that most anticonvulsants now have a black-box warning about suicidal ideation. But I'm more concerned with drowning in the shower (my last seizure occurred in a shower that was not draining properly; I felt the world go grey and hit that shower door hard, and the next thing I new I was exhausted and achy on the bathmat, water running cold behind me) or wandering out into traffic.

16. Something I never thought I could do with my illness that I did was: Skydive! I skydived in 2006 to raise money for RAINN and SOAR. Don't worry, it was a tandem jump.

17. The commercials about my illness: I've never seen one.

18. Something I really miss doing since I was diagnosed is: Being spontaneous.

19. It was really hard to have to give up: Driving. Not that I ever really loved it, but it's difficult to get around without it! That's one of the reasons we moved from Atlanta to Boston. Adequate public transit FTW.

20. A new hobby I have taken up since my diagnosis is: Um. I have a bunch! But nothing actually related to my diagnosis. I guess I could tie my knitting into that, if only because I choose pain-in-the-ass yarns to help train myself to be more patient.

21. If I could have one day of feeling normal again I would: Not want it. Because the following day would be far too painful.

22. My illness has taught me: That we are so fragile, so finite.

23. Want to know a secret? One thing people say that gets under my skin is: "You're lucky you don't get grand mals". Yeah, grand mals suck too, but complex partials don't really suck any less. There's a perception that partials are less serious and less traumatic, and that ain't so.

24. But I love it when people: Look out for me without being overbearing and infantilizing me - when they ask intelligent questions about epilepsy, or ask if I need a ride somewhere.

25. My favorite motto, scripture, quote that gets me through tough times is: "I have a sickness in the brain. I'm allowed to make no sense to you puny mortals with your fully operational head-meat."
--Spider Jerusalem

26. When someone is diagnosed I’d like to tell them: That it sucks. On, it sucks. But it's not The End of Your Life, and you're not alone.

27. Something that has surprised me about living with an illness is: How it insinuates itself into every aspect of your life.

28. The nicest thing someone did for me when I wasn’t feeling well was: The aforementioned looking out for me. Also, my husband is a freakin' saint.

29. I’m involved with Invisible Illness Week because: Too often invisible illnesses are ignored - but they impact lives in a big way. Be aware.

30. The fact that you read this list makes me feel: Like you're having a really slow day. But thank you!

Oh, and the icon? My seizure focus is a lesion on my left hippocampus. Sick hippo. :)

Stalled... $125.

So we ask: what would make you more likely to sponsor us to get Gwyn here for Thanksgiving? I know a lot of you flat-out don't have cash to spare - I do not post this to pressure you. But other folks - are the fairy tales we're using too obscure? Want less poetry? More SF interpretations? We will be your writer monkeys. Clue us in! :)

Wind Tunnel Dreams: Fairy tales for Family

In honor of Invisible Illness Week. Not an adaptation of an existing fairy tale, but an effort to view aspects of my life through the lens of fairy tales. Wrote this a while ago.

I walked for seven years,
wearing out seven pairs of iron shoes,
all for you.
I surrendered my voice, my body,
cleaving in two -
every step like knives shooting through these legs.
All for you.
I wish, I wish -
I wish there was a reason.
I wish this was all for something -
to rescue a sister, a lover.
To set something right.
I want this to mean something.
I want it to have been for something.

The cruelty of this is in variation.
There are days I feel almost well,
weeks where I think that perhaps the curse has petered out,
cycled away like a lunar eclipse,
the disc of pain moving out of my orbit.
It would be easier to bear were it constant.
It would be easier to bear if I always needed a cane.
I could be prepared.
But this -
this is where despair lives.
In the feeling that one has backslid.
Has failed to be well.
That one was almost there, almost -
but, like Orpheus, you turned your head,
and health fell away.

You cannot know it.
I cannot make you know it.
Not just the pain -
pain like every muscle contracted and pulled
deep muscle ache
flash of pain like knives
radiant aura of pain around hips
tangling its fist in my back.
People are not equipped to understand this pain
without living it.
And I do not wish it on you.

Not just pain.
Bone-deep fatigue,
and the slow unpredictable malfunctions
of heart and gut and every part,
everything you thought you could depend on,

lights shutting out one by one,
or flickering feebly.
I wish it were a fairy tale.
Were it a fairy tale, there would be a magic word,
a secret task -
some way to break the spell.

It tears you apart,
its hooks rending you.
It pulls the joy from you,
dragging it out,
catching it on hope and fear,
a tangled mess.

Me, I streak my hair all the colors of fire.
I paint my eyes with glitter and hang seashells from my ears.
I wear skirts that make my walk
(when I can walk)
a dance,
striped socks,
shoes with flower-wreathed skulls.
I form a net to keep the joy in.
I catch it on my wild curls and woven silver and the swirl of my skirt.
And my eyes, my shoes, my dance - it makes you smile.
It gives you some small measure of happiness.
I catch it, the reflection of your joy, like the light of the Moon.
Perhaps I can make a spell of my own
And sing my restoration.

We are at $125 and need $300. Bring my sisterlove (and fellow Chronic Pain Lass) home for Thanksgiving! Remember, one luck sponsor will win a kythryne pendant!