Worse Lately

It's just all been worse lately. I guess my mood hasn't been that terrible, considering, but the pain's been awful. I've felt the early signs of a migraine all day today, which means I'll have to pull myself together to make it through the workday and class tomorrow. I'll try to get some extra salty chips- sometimes the salt helps a little. I have my sunglasses packed but I can't find my earplugs. I guess I can try to listen to soft music to cover up the piercing voice of my cubicle-mate tomorrow.

I think I'll do a layered account of chronic pain for my autobio/autoethno final this quarter. Grad school's pretty lenient that way. I should probably try to work it toward my proposed capstone project and talk about sexuality some but this seems more important to me right now. I need to come to terms with the fact that I'll probably be in pain everyday for the rest of my life. After seeing A Single Man today, the idea of shortening it seems even more awful- not that it isn't always, but I feel guilty even when the idea pops into my head for a minute or two.

Anyway, I'm sure I can relate sexuality to chronic pain. Honestly, in a society where "headache" seems to be the big excuse for not wanting sex, how are you supposed to use it as a legitimate reason, you know? These are the things I worry about.

I should try to get on something to help me sleep despite the pain. No more Vicodin for me! (she says, knowing full well she'll fall back into the habit when next she is caught at 4AM with nothing else to think of but the continuous pain)

Anyway, I'll try to come up with a short piece on sexuality and pain. It's sad how it sounds like S and M- not that I have anything against it- because that seems to be what all sexual experience comes down to nowadays. The knowing that my neck will hurt and continue to for hours and hours afterward.

M: 3
P: 8

young and with pain

i won't say much, on account of my posts looking a bit ridiculous without caps and taking a bit longer without using my pinky, but i thought some info on being young and in chronic pain might be useful/helpful/interesting? i will make sure to comment more on these in the future-- i do not agree with everything! (i went to a lot of work to type that exclamation point, by the by)

Chronic Pain More Devastating to the Young- article



-- i had a v. different experience than her, but i am positive others have felt like this!

"chronic pain: too young for this"- another article

night... for real this time. can't sleep!

my hand is spazzing

today is a strange pain day. not in a bad way, i think, except it is harder to type and write and things. it's the kind that shoots- a moveable pain. it kind of reminds me of those drawings of family trees or maybe when the magic school bus kids travel through the blood stream. it travels from my fingers through my arm up to my shoulder then spreads to my neck and back.

only for a few seconds though, each time. particularly if i move my left pinky- hence the lack of caps.

nearly broke down in class, it was so bad. i really ought to talk to my profs, but i just hate talking about this thing with "strangers," though what else is a blog, really? i'm certainly not sharing this whine fest with my friends and family.

anyway, it's starting to feel better and i can sleep in tomorrow. just need to update my other blog, i think. maybe not. just go to sleep and try to forget for a bit. i hope it doesn't enter my dreams again. i should write about that experience later.

best.

m: 6
p: 8

A Migraine Blog on NY Times!

I found this while looking for info on Lewis Carroll's migraines. Here, for one, is the article on Lewis Carroll: http://migraine.blogs.nytimes.com/2008/02/24/curioser-and-curiouser/

Also, I would like to link you to the blog itself, because it is most interesting, and I should remind myself to keep up to date: Migraine: Perspectives on a Headache

Edit: Ah, the last post was in 2008. I suppose the blog has ended but it is still there for us to read! I'll read back over it and see what interests me, apart from the Carroll article.

Virginia Woolf's Headaches

Excerpted from Virginia Woolf's diaries, which are quoted in the article "VIRGINIA WOOLF'S PSYCHIATRIC HISTORY: Headaches and Minor Illnesses."

8-8-21: "What a gap! How it would have astounded me to be told when I wrote the last word here, on June 7th, that within a week I shd be in bed, and not entirely out of it till the 6th of August - two whole months rubbed out - these this morning, the first words I have written - to call writing - for sixty days; and those days spent in wearisome headache, jumping pulse, aching back, frets, fidgets, lying awake, sleeping draughts, sedatives, digitalis, going for a little walk, and plunging back into bed again - all the horrors of the dark cupboard of illness once more displayed for my diversion."

Note: I can complete relate with her in regard to the loss of time and the listing of medicines. It seems like half my life is spent trying to find that perfect combination or that one additive that will make my everyday physical experience pleasant once again.

L 26 6 30 "...been out too much at night L says - and have the usual headache - a pain that is in the back of the neck."

Note: The reference to a "usual headache" is sad but so true. It becomes the common to be in pain and the painless days are the exception. Even a day mostly free of pain is a luxury.

L 15 8 29 'These headaches leave one like sand which a wave has uncovered - I believe they have a mystic purpose. Indeed, I'm not sure that there isn't some religious cause at the back of them - I see my own worthlessness and failure so clearly; and lie gazing into the depths of the misery of human life; and then one gets up and everything begins again and is all covered up......I am obsessed at nights with the idea of my own worthlessness, and if it were only to turn a light on to save my life I think I would not do it. These are the last footprints of a headache I suppose. Do you ever feel that? - like an old weed in a stream.'

Note: Two things about this entry are familiar- (1) the concept of pain being a punishment of some sort from a god or spirit, and (2) the depression that accompanies pain. I remember believing that my pain may be a result of my sexual attraction to both males and females for a long while. It is difficult to maintain faith in a cruel god who would be so unkind though. I have yet to find a decent crisis of faith piece in relation to pain. Also, inactivity as well as the religious guilt can lead to this experience of self-detestation.

Starting a Chronic Pain Support Group on Campus

Oy gevalt, this may be a long sort of process. I had expected it to require far fewer students but shan't be dissuaded by adversity! A bit of drama- sorry. Anyway, I am copying the "Starting Your Own Club" guidelines from the UW Bothell Student Life website. Any notes included will be in a different color.

A 5 Step Process

Step 1

Join up with 4 other UW Bothell students who will be the officers in your new club.

So, I guess that means FIVE students total. I can only think of two other students with chronic pain who I could convince to join. It might be best to send something out to the MACS listserv, or perhaps there are guidelines for this sort of thing. Also, there may be staff members interested, so I should check if only students can join clubs or not. I think it would be nicer if it was an open community-- including staff, faculty, and even people from outside the campus. But I suppose it does say "UW Bothell students" and this is only OFFICERS. Maybe rules are different for "plain ol' members" versus officers.

Step 2

Find a full-time faculty or staff member willing to be your advisor.

I'm pretty sure I can find a faculty member... isn't is "adviser"? Misspell? Anyway, a lot of the professors are very interested in disability research and chronic pain is one of those "invisible disabilities" just gaining better lighting in the academia. I can think of two professors I might ask quite easily, though one is out of the country this year... Does the adviser need to be on campus, or can s/he be on sabbatical?

Step 3

Write a Constitution for your Student Organization.

Seems pretty easy. I pretty much do things like this all day at work. Anyway, it would be pretty easy to adopt the policies of a similar group and alter them to fit our needs.

Step 4

Fill out the on-line registration form and submit your Constitution/By-Laws.

This includes creating a website- huzzah for already knowing the code! This part seems easiest of all, so far.

Step 5

After your registration form has been confirmed by the Office of Student life, schedule a student organization orientation with the Coordinator of Student Programs.

Orientation? Ew. I can see people not wanting to go. I wouldn't even want to go. Orientations are so unpleasant. I'd have to convince people with chocolate.

Anyway, that is the plan. I'll be emailing with one of the ladies I spoke with about this all week and will certainly update my blog according to the developments. Also, will seriously try to begin the pain management regimen tomorrow. It was a rough day, so I just want to read and go to bed now!

P: 8

M: 6

Okay, Let's Try Again...

So, I got this book Managing Pain Before It Manages You (Margaret A. Caudill) quite awhile ago, which is basically a pain management how-to guide. I started out fine, kept a pain diary and all (the one with the rating of pain and emotion levels three times a day) but stopped following the program once school began.

Anyway, I think it's about time I got back to it. Especially on account of the crazy Vicodin side effects, which are just unpleasant. So, I'll try to keep up blogging about how that goes.

Also, I'm getting A Brain Wider Than the Sky: A Migraine Diary (Andrew Levy) from Amazon later this week. Hopefully, I can learn from his experiences with migraines. I read Elizabeth Wurtzel's Prozac Nation- about depression- and it really helped me reflect on the reality of how selfish a person is when depressed (I mean to say that I was/am, at least!). It should be helpful, I think, to learn from another person's experiences with chronic pain.

Similarly, I'm going to keep posting any nice headache/pain poems I find. I like to see how other people put their conditions to words-- even if I can't!

Lastly, I'm going to try to get a copy of The Body in Pain: The Making and Unmaking of the World (Elaine Scarry). Here is the product description from Amazon.com:

Part philosophical meditation, part cultural critique, The Body in Pain is a profoundly original study that has already stirred excitement in a wide range of intellectual circles. The book is an analysis of physical suffering and its relation to the numerous vocabularies and cultural forces--literary, political, philosophical, medical, religious--that confront it.

Elaine Scarry bases her study on a wide range of sources: literature and art, medical case histories, documents on torture compiled by Amnesty International, legal transcripts of personal injury trials, and military and strategic writings by such figures as Clausewitz, Churchill, Liddell Hart, and Kissinger, She weaves these into her discussion with an eloquence, humanity, and insight that recall the writings of Hannah Arendt and Jean-Paul Sartre.

Scarry begins with the fact of pain's inexpressibility. Not only is physical pain enormously difficult to describe in words--confronted with it, Virginia Woolf once noted, "language runs dry"--it also actively destroys language, reducing sufferers in the most extreme instances to an inarticulate state of cries and moans. Scarry analyzes the political ramifications of deliberately inflicted pain, specifically in the cases of torture and warfare, and shows how to be fictive. From these actions of "unmaking" Scarry turns finally to the actions of "making"--the examples of artistic and cultural creation that work against pain and the debased uses that are made of it. Challenging and inventive, The Body in Pain is landmark work that promises to spark widespread debate.

Goodnight!

P: 7

M: 7

I felt a funeral in my brain

I felt a Funeral, in my Brain (280)
by Emily Dickinson

I felt a Funeral, in my Brain,
And Mourners to and fro
Kept treading – treading – till it seemed
That Sense was breaking through –

And when they all were seated,
A Service, like a Drum –
Kept beating – beating – till I thought
My Mind was going numb –

And then I heard them lift a Box
And creak across my Soul
With those same Boots of Lead, again,
Then Space – began to toll,

As all the Heavens were a Bell,
And Being, but an Ear,
And I, and Silence, some strange Race
Wrecked, solitary, here –

And then a Plank in Reason, broke,
And I dropped down, and down –
And hit a World, at every plunge,
And Finished knowing – then –

Paranoia

That's the real trouble with Vicodin-- the paranoia. Honestly, I feel like my heart won't stop throbbing even 24 hours after taking the damn pill. I constantly worry that I'm going to be attacked. The man with the knife-- my recurring hallucination-- has yet to return, but I think if I had taken the pills one more night, he'd have gone back to his old habits.

Anyway, I was sleeping in on account of my neck really hurting and the doorbell rang. I thought it might be one of my friends, so I went to the door in just my pjs, which really don't leave a whole lot to the imagination breast-wise. It turned out to be an electrician fellow letting me know they were doing a bit of work in our yard.

The trouble was, he just couldn't seem to stop staring at my breasts. He kinda smirked at me too, and it all just made me very nervous.

But then I closed the door and went back in alone. The rest of the time I was home I worried that he was going to break in and rape me. I know and I knew at the time that I was being paranoid but the Vicodin wouldn't let the thought rest to the point that I wanted to call someone to come keep me company for a little while. It's like Vicodin can bring you to the brink of a mental break down.

Moral of the story-- Vicodin's effects do not outweigh the HORRORS of its side effects.

Support Group!

I am going to try to start one for reals! I know a few people in my cohort that also suffer, so I shall approach them and ask. It is a bit probing but I really need a community to share my thoughts within. It isn't enough to complain to my mother every once in a while-- I feel like I must have empathy or explode!

I shall try to do it as a student club. Wish me luck!

Four Long Years!

It took me four long years to settle all of this nonsense. Finally I have my settlement. I bought a Wii with a bit of it and all the rest into a fancy schmancy savings account at the credit union. It's exciting- I've been saying I'd get a Wii with a bit of the settlement for a long while and finally it has come true! It is a very fun system, but probably not wonderful for my back, actually.

The trouble is, I've been telling people that I got this gaming system on account of settling, and people ask questions-- just not the right ones! I think people think I'm just some jerk who sued somebody just to get money, but really it is compensation for being in pain all the time. Sometimes, people ask me about the pain but I think I'm not whiny enough about it. No one wants the drama but I also think it should be recognized that I didn't just bring it up to be whiny in the first place!

I keep not wanting to be dramatic when I get migraines in class, so I tough it out without sunglasses. It's really dramatic to wear sunglasses in class. But then, maybe I should stop worrying about being perceived as a silly thing and worry instead about how I feel!

Invisible disabilities are rough. I don't want people to think I'm faking. Or exaggerating. It hurts. All the time! Just because I've gotten better at toughing it out, doesn't mean the pain itself has decreased or anything.

Plus, I've been having a nasty reaction to Vicodin. I took it a bit this weekend on account of bad pain but it is the worst thing in the universe. I should remember that it is even worse than pain! Honestly, it makes me insanely paranoid-- I will make sure to tell the story at some point about my hyperparanoia.

Low mood!

P: 7
M: 3

The Impossibility of Comfort

it is always at night when the monsters come
they creep out from under the bed
through the bed
always upward toward the torso
feeding on the neck, the back, the shoulders
but nibbling on the arms and head just enough
like someone's been pulling at my hair
while i've been trying to sleep

the cat is loud in his dreams
breathing deeply, snoring, turning a bit
he sleeps in so many strange positions
and there is not one
(how can there be none?)
in which i can slip away
tossing about and waking the poor cat
perhaps a bit maliciously

the room is without light
but it is still too bright
the hurt creeps to the base of my head
one pillow
two then three
then none at all
i lay flat on the floor
return to the bed
travel to the sofa
use the cat as a pillow
his loudness gives me a headache more

the question returns as it always comes
on nights like this
when my sheets are half on the bed
half on the carpet
the pillows strewn about
and the cat unhappy
my bedding damp from ice
and warm from the heat pad
stomach full of healing tea

is a sleep of strangeness that is frightening
the absoluteness of a murder
he will come for me
is it worth it?
to get sleep at all
better to stay awake
enjoy the self-pity a little?
to vicodin or to suffer and awake?

cruelly, that is my question

Settled!

I am going to buy a Wii. I will try to update more about this later, though not amounts, because that'd be indiscreet.

I got enough for a Wii, not enough to finance a major motion picture.

:)

Mediation, OR, Would that I had a bullet in my head

Let me just say, there are few things less pleasant than a mediation, when law is involved. The actual car wrecks themselves were probably more pleasant.

Basically you sit around all day. Like 10 hours. Ew. I know that I'm pretty much universalizing my experiences, but I've been told that my mediation was pretty average, length-wise, and my experience with the LAW in general. Safeco was involved and they are a big company. As in everywhere.

They were also the ones to blame for wasting my entire day.

So, the mediator man came in wearing the finest suit I have seen in my entire existence and we spoke about a starting price to settle at with my lawyer. We had to say way higher than we actually wanted- like twice as much!- because it all gets negotiated down.

Then he went to talk with insurance co and their lawyer #1 and insurance co and their lawyer #2 respectively to talk numbers.

They offered way too little, and he came back to renegotiate with my lawyer and I, and we went down a smidge.

This continued all day. Safeco was pretty harsh, I must say. I'm not sure what I'm allowed to say legally, so I'll just end with the note that it all took forever and I will never ever ever insure with Safeco.

Ever.

Deposition!

I don't really remember except that it was pretty short. Mostly just me reiterating all that happened on the days of the accidents and meeting with the attorneys. Not very fun.

The stenographer took it all down and I got a copy the day before my mediation. Dear me!

Attorneys are very very slow to get things to you but expect you to get back very quickly. I got called at 4:30 once and was told I needed to get back to them by 5:00! While I was at work! How. Annoying. Enough to make two sentences out of it.

Anyway, I was very stressed out about the deposition but it only took a few hours. As for the mediation, oy gevalt, that is another matter!

The Headache

"The Headache," Jane Cave Winscom

Not one short month for Ten revolving years,
But pain within my frame its sceptre rears!
In each successive month full twelve long days
And tedious nights my sun withdraws his rays!
Leaves me in silent anguish on my bed,
Afflicting all the members in the head;
Through ev’ry particle the torture flies,
But centres in the temples, brain, and eyes;
The efforts of the hands and feet are vain,
While bows the head with agonizing pain;
While heaves the breast with th’ unutterable sigh,
And the big tear drops from the languid eye.

(152–5, lines 13–24, Winscom’s italics)

Things I Should Update in the Near Future

It's been awhile, so a lot has been going on...

I shall tell you soon about:

Support groups

Mediation

Deposition

Settling!

What I'm going to do with my blood money

No sympathy

Insurance


Also, I plan to write a layered account of chronic pain tying in with headache poems.