I’ve been awake now for a solid twenty-four hours.  Years ago, I was no stranger to this, but my life has changed.  I’m so much healthier now, in so many ways, that trying to describe them all would probably take hours.  These days, a twenty-four hour stint would generally take a huge toll on me, but I think there will be an exception to the rule in this case.  I’m only just now starting to wind down, and will sleep as soon as I manage to find all the words I need to write.

Happiness has eluded me for much of my life.  I don’t mean that in a cloying, pitying way, but as a simple fact.  True, I was happy as a child, but as soon as adolescence hit, my mental, emotional, and physical selves crumbled.  Most people recover from puberty; I wasn’t one of those people.  I don’t mean in the, “Oh, kids are so mean to each other” way, but in the sense that I either developed or began to show the signs of six separate serious chronic illnesses at that time.  By age thirteen I had narcolepsy, bipolar, post-viral syndrome/myalgic encephalomyelitis, fibromyalgia, poly-cystic ovarian disease and Raynaud’s — I just didn’t know it, and wouldn’t know it for almost a decade.   (I had adult onset of Sjögren’s, bone spurs on my coccyx, muscle deterioration of unknown cause in my left knee, sciatica, coccydynia, piriformis syndrome,  and if I ask my doctors I’m sure they’d remember quite a few I’m blanking on in my sleep deprived state.)  As an adolescent, not only was my mental health under the pressure of freshly awakening bipolar, but I had been molested at the age of eleven by a friend of a friend and repressed the emotions around the incident.  That lead to me developing a variety of delightful psychological defenses, beginning with panic attacks and social phobia and eventually leading to full on agoraphobia.  At the age of fifteen, I was finally kicked out of school.  I essentially hid from most of the world, barring a few people I met through the internet, until the age of twenty, when I was finally properly diagnosed with bipolar.  At twenty-one I was diagnosed with the cusp of the physical conditions, which lead to the beginning of treatment.  Full treatment.  I went out into the world as a physical 21-year-old woman, but I had the social skills of a thirteen-year-old.  Six months or so after diagnosis, I began dating a guy nineteen years older than I was; within another six months, we were living together.  We were together 3 1/2 years.  Sometimes during those years, I thought I was happy, but eventually I realized it was only a shade of happiness, a glimpse of potential — and it wasn’t going to get better.  So I turned my life upside down: decided not to return to Australia, left him, became homeless, and started from scratch.  That was in September 2005.  It’s taken me almost five years, but I now no longer live in the shade.

I am happy.

In the past five years, I have had some amazing high points on the happiness scale.  I never thought I would say this before I did it, but getting married (all three times) to Matt were three of the happiest days I’ve had since 2005.  Today (yesterday), June 4th, 2010, is another one.

I truly believe that nothing can be completely appreciated unless the opposite has been experienced.  I have been so full of hopelessness that I’ve made a couple serious suicide attempts.  I’ve purposefully walked away from everything in my life, and I’ve unwittingly had it all torn away.  I can sing the muthafuckin’ blues; I’ve got rights to them.  But I don’t want them anymore, don’t need them anymore.  I’m on the opposite side now.  I’m a freakin’ one woman Aqua musical revival, and I love it.

I’ve got such bad logorrhoea right now that I can’t even get to the point, haven’t even begun where I wanted to start.  I wanted to write about my day, not about my life.  Paraphrasing Margaret Atwood, context is everything.  I can’t appreciate where I am now without knowing where I’ve been.

Right now, I’m lying on the floor in the basement of our little house on the hill.  I watched the sun rise.  I just got home from work.  I’ve been on fire all day, life source fire, and people around me can tell.  I looked like shit — no makeup, skin broken out, hair flattened and frizzy, bruises all over my legs — just completely washed out, tired from a long day like I should have been.  But I guess — okay, no, I admit, I know I appeared to look incredibly fucking hot, because I shone.  And I’ve never in my life been hit on respectfully so many times in one night.  It’s incredible how different life can be when I’m actually happy to be alive… people treat me better, maybe because I’m treating them better.  Maybe a lot of things.  But it seems to command a certain respect that I could certainly get used to.  But that’s a tangent better explored another time, in some other thesis.

Let me just get to the damn point already, because after an hour of this, I’m actually actively tired. (Which is a shame, because I want to write about the symphony of birds I hear every morning, the lusty smell of my dew-covered garden, and so much more.)

After eight years of the medical community affirming that I do indeed have conditions that cause chronic pain and eight years of trying every other fucking treatment under the sun (Paula Kamen of “All In My Head” ain’t tried a damn thing I haven’t), not to mention denial, self-medicating with alcohol, hiding in bed as a permanent solution, and the overuse of opiates, I finally got up the nerve/broke down and got referred to a pain clinic.

Ladies and gentlemen, they’re going to fix me.  The biggest part wrong with me, anyway, which is the constant pain in my ass.  They’re going to put me under sedation and inject one of those amazing slow release super-drugs into my sciatic nerve.  I’ll essentially never have to feel the godforsaken thing ever again.  ”Youse free, Missy Scarlett, youse free!”

I don’t expect anyone to truly understand how momentous this is for me.  The pain is going to go away?  That’s like telling me I’m going to get a third eye, or a penis.  I just have no concept whatsoever as to what life without pain is!  What do you do with it?  What is it like?  I’ve seen other people go about their business and it looks intriguing;  might I now have a shot at this wonderland?  I mean, maybe I could leave the house without bringing topical analgesics that make me “smell like old people,” and cause my co-workers to run away from me for fear I might literally rub off on them.  Perhaps I could take my dogs for a walk.  Oh, bigger things?  Maybe I could ride a bicycle for the first time since childhood!  Oooh, wait for it — here’s the big one!  It might even enable me to sit through classes long enough to finish my AA, let alone get a degree!  And then, well, shit, son, maybe I could have one of those, whaddyacallem? — gainful employment things!

Realize, please, that when I say pain, I’m not just saying ouch.  I know Everybody Hurts and achy boo-boos and work soreness and all that.  I get it.  But please understand that the kind of pain I deal with on a daily basis is so deep within my body and so widespread, that my skin can be sliced to shreds and I barely flinch in comparison.  This isn’t an exaggeration.  I spent three hours on the table getting tattooed today; it’s the beginning of only my second tattoo (poverty will do that to a girl).  I nodded in and out of consciousness for most of it, able to semi-sleep while the artist worked on my arm.  Everyone in the shop said I sat really well and that they were impressed by it.  I honestly don’t know what was impressive, because I’ve never watched someone else get a tattoo for more than a few minutes at a time.  All I know is that while the needle was continually piercing just a tiny few layers of skin on my arm, deep inside my left buttock sat a ball of volcanic fire, occasionally spilling down my legs or reaching up into my back like heartburn.  That’s the pain I know.  It’s kind of like having a really intolerable cell mate who spends all day, every day, beating you.  I used to think I had a life sentence, but now… I’m getting out.  I’m getting the fuck out of Ass on Fire Land, and have no idea where I’m headed next.  But context is the key — I’ve uprooted myself before.  And this time, sheeut, look out!  I might finally be a force to contend with.

I meant this to be beautiful, not gibberish, long-winded, fragmented, and boring, but now I’m exhausted.  And I don’t write for shit in this state.

Today was one of the happiest days of my adult life, for realz.  Thank you, to those who shared it with me.

[7:03am note: links to be added later]

I have since come to the conclusion that “real friends” either live with me, used to live with me, or know me so thoroughly as to not ask if I’m “feeling any better yet” but keep talking to me as though it doesn’t matter if we see each other 1x/week or 1x/3 years.

No, I can’t come out and play tonight. That doesn’t mean you should stop asking. If you stopped being able to hear, would you want people to stop communicating with you? Of course not. Just do it in other ways. And if you don’t care to, then our relationship obviously wasn’t reciprocal in the first place. So the next time you see me, don’t be surprised if I give you a cold shoulder and play down your entreaties of friendship and activities — you didn’t contact me once while I was out of your sight, and now you want a piece of my limited ability?

Go fuck yourself, friend; it’s clearly you who is disabled — in the heart.

I grew up thinking I had bigger boots to fill than I was apparently suited for. I thought I was going to stomp all over the stratosphere and leave sizable imprints behind me as evidence of my impact. Lately, I’ve found my self-importance has ranked me lower than an ant in Yellowstone National Park — not just small, unobtrusive, hard to find — but a molecule in the atmosphere, floating willy-nilly with no purpose, invisible to everyone except those who can imagine I am t/here.

Over the years, I’ve gone from dreams of megalomania to the realization that I’m melting away into the wallpaper, unnoticed, untouched, and not truly responsible for anything except my own demise.

Maybe this is growing up? When youth’s dreams of greatness melt away to the reality of mediocrity in a non-meritocracy, maybe this is what remains — defeat. Or maybe this is the other side of mental illness — having chased away the Phoenix who wanted to soar, I’m now lured by the Hob who hangs out at home, helping around the house and hoping to be invisible.

Because I feel like I could be painted into the wallpaper around you, but you still wouldn’t see me. Apparently, I’m not to be seen.

Or maybe this is actually the worsening of mental illness — having realized that big boots and awesomeness were not possible, I decided that I would be nothing, no one. I diluted what I was — and I miss what I was — in order to “get by.” Except getting by means not doing anything at all. No goals, no substance, no drive, no hobbies — everything was washed away in the quest to get rid of the impossibility of making the mania feel happy, justified, complete, or accomplished. Sack the bitch and get left with the non-producing sow.

Is it the certainty of youth that I miss, or the disease? Was the drive all due to my age, or sickness? Now that I’m older and have my diseased mind in better control, who am I? Am I anything? Do I feel anything, think any non-diseased thought? Will I ever truly be able to reconcile how I feel about what I did in my youth (at times, all of a year ago!)? Or is it just this, from here on out, this vagueness, this even-tempered grey area of the mind that rarely visits the colored world anymore? Perhaps this is why my (much older) second cousin (on my father’s side, which is the side with all the bipolar people like myself) refuses to take medication. Maybe it’s the medication that detaches you from life. Or maybe it’s growing up. Or maybe it’s the disease progressing to a downward turn. Or maybe this is just how I’m supposed to be — once a bright light, now dim and dusty.

I don’t know.

The more time goes by, the harder it is to think, to write, to provide conjecture about these things. The more I just fall into this grey place where I’m not sure I should be, but I don’t know how else or where else to go — particularly because maybe I’m supposed to be here.

One thing is for sure: I miss the stinging clarity mania pretends to provide. It might not be real, but it feels damn good at the time.

It really feels like a Catch-22, to end up in a situation where I had to make a decision that to improve part of my health, I had to give up all my health and financial security. Matt doesn’t make enough for us to get by in this high cost-of-living area, and I’m too gimpy to find a job that’s where the income is steady enough that the wages will matter. Oh, and possibly, maybe provide health insurance — no, that’s far too much to even slightly fantasize about, much less ask for. [He pays $300 a month for my health insurance, then add our other health expenses like out-of-pocket and co-pays, and that’s another $300+ per month. $600 per month. That’s just under the U.S. average of $7500 per person per year as of July 2009, though it doesn’t include our tax or employer contributions (which changes the numbers drastically).

Along the same vein, I saw the gyno for my annual last week. I was several months late. My last annual came back fine. This one, I have a lot of abnormal activity going on, so much so that my doctor doesn’t want to wait six months to do another PAP but wants to go ahead and schedule a colposcopy. Last time I had one, in 2003, I had to have a LEEP done soon after. If I keep having to have my cervix frozen every five years, I hope I can just get the damn thing cut out. It’s not doing me a hell of a lot of good, anyway. ]]> http://cassandradisque.com/2009/12/07/bummer-of-a-day/feed/ 0 http://cassandradisque.com/2009/11/25/the-hater/ http://cassandradisque.com/2009/11/25/the-hater/#comments Wed, 25 Nov 2009 23:24:21 +0000 Cassandra Disque http://cassandradisque.com/?p=4023 Am I the only person I know who just loathes Thanksgiving?

Every year I want to get in a plane the week before, fly to another country, and not come back until the following week. And no, I wouldn’t have a “festive meal” or meet up with ex-pats while I was gone. If I ate at all, it would be some regional food, in a normal portion, without a dreaded BIRD sitting on the table in front of me. There would not be the inanity of family surrounding me, teasing me and cajoling me about the amount of food I (haven’t) eaten while they all go back for thirds. There would not be three pies in three different flavors.

Am I the only person I know who actually loved going to work on the night of Thanksgiving? Not just because it gave me an excuse to bail on “festivities” early, but because it gave me something active and positive to do. Not only was I earning scads of filthy money, but I was burning calories and was far too busy and isolated from my other co-workers to join in with the extra-curricular activities. Not to mention, it prevented me from sitting at home, stuffing my face full of left overs while drooling in front of the idiot box.

But this Thanksgiving, there is no work to run off to and I have to spend the day with my in-laws and their extended family. Their Catholic, praying-over-enormous-meals, talkin’ Patriotism and bashing government sponsored healthcare family.

Hate Thanksgiving. H-A-T-E.

I’m avoiding the real issue at hand which is that my grandfather just died a few hours ago. No word yet on when I’m leaving for Florida or when the service is going to be. I feel overwhelmed. We’re supposed to be moving into our house this weekend, my thumb is still inoperable, we have the new puppy who can’t be left home alone (at all) yet, and yet I must and will go be with my family. I feel really bad for Matt, actually…yeah, my grandfather just died, but he’s going to be stuck here managing chaos, and that’s not exactly his forte.

Friday morning I had 5-6 episodes where I temporarily lost my sight, hearing, and couldn’t move. Each episode lasted for several seconds at a time. Some felt stronger than others, though I don’t know how to describe how. I don’t know if they were painful when they were happening, because all I can remember is being terrified while they took place. There didn’t seem to be any warning, just suddenly this violent pitch blackness overtook me.

They weren’t catalepsy episodes. Because of having narcolepsy, I have had several to many catalepsy attacks in the past, so I know the difference. catalepsy attacks the muscles and causes the body to “drop,” but it doesn’t cause temporary blindness or deafness. [Aside: it just occurred to me that I'm not sure if I was still able to breathe or not, as I was so utterly panicked I failed to pay attention. But during catalepsy, most people can still breathe. There have been cases (very rarely) where people have actually been accidentally declared dead, but I've never experienced that kind of catalepsy. My experiences have never been anywhere near as strong. Most cataleptic attacks leave the patient completely aware of what is going on around them, which means sight and sound are intact -- those are the types of cataleptic episodes I have always experienced before.]

My psychiatrist, a second psychiatrist, and my general physician all say that they do not believe the episodes to in any way be a side effect of any of medications I am on. They also agree that because my history with catalepsy does not mimic these episodes, they don’t think it’s related. They all say that it sounds like “seizure activity” (exact quote). I’m supposed to get an EEG and an MRA. I’ve been waiting for the right paperwork from the insurance to do so.

I’m not allowed to drive until the test results come back, which mean I’m housebound again.

My blood work for the infection now comes back negative but I’m still getting a lot of wicked migraines and still running fevers several times a week. The CT scan of my sinuses came back okay; there is still congestion (infection) in my sinuses but nothing horrible. There’s still fluid in my lungs and ears as well; it simply doesn’t seem to respond to the antibiotics. Since May I’ve been on two months worth of antibitotics: zithromax, clarithromycin, ciprofloxacin; as well as diflucan; guaifenesin with codeine, chlorpheniramine with hydrocodone; claritin-d, allegra-d; flonase, nasonex; albuterol, adavair; treximet, ib profen 600s; and some other stuff I’m not remembering the names of at the moment.

* * *

Under Word Web’s definition for catalepsy, it says “See: psycho, psychotic, psychotic person.” That pisses me off, a lot. Under the definition for psycho, it says “A person afflicted with psychosis; Synonyms: psychotic, psychotic person.” It doesn’t say anything about those usages being offensive at all. Under the definitions for queer and nigger, it does point out that they’re considered offensive.

I might not be the most politically correct of people, but I do think that says a lot about what we as a society still consider to be acceptable to look down upon and what we don’t. People with illnesses and disorders of the brain still have a hell of a long way to go before they’re given equal treatment on the human rights bandwagon.

* * *

Something I’ve been interested in for years but am currently feeling a resurgence of is how people refer to chronic illnesses, from a socio-linguistic perspective. A lot of people in Western culture talk about “Lauren’s diabetes,” “my spasms,” “our fibromyalgia,” as though the illness is “owned” or perhaps “ruled” by the person who has it.

For example, it may not be as common to hear [individual experience may vary, and as a sick person my experience is skewed because people will talk to me about illness of their own or of their friends or relatives in order to have a "common ground" or "bonding experience"] “I get headaches which prevent me from going to the movie theater” as it may be to hear “my headaches prevent me from going to the movie theater.”

The change of language personalizes the experience: the speaker is emphasizing that these are their own experiences that happen frequently, and not something that just can come and go like with other people. It also shifts responsibility onto the illness: the speaker won’t take a chance on an activity because a symptom doesn’t just happen — it reliably happens. (I am not getting this out of my head in the way that I want and upon rereading this can see where my statements are quite contentious; they’re not meant to be. I’m trying to semantically dissect statements and that seems to be beyond my capability at the moment.)

Do other cultures do this (do they take linguistic and then perhaps psychological ownership or subservience of or to chronic illness)? If not, what about their cultures prevents them from doing such?

Anyway, this interests me, in the way that Kristin K. Barker’s ‘The Fibromyalgia Story’ interested me. It’s an anthropological study that I found myself both agreeing with and getting angry at — in other words, it was really well done. (Angry at because it WAS well done and did not actually take a side about whether or not the author believed fibromyalgia to exist or not; in that, it was a true anthro study.)

Ow, my head. I’m afraid I’m never going to get anything done with my life except say “ow.”

Getting married and getting off Medicaid was supposed to be wonderful, right? We didn’t take into account being sick long term. I miss Medicaid’s $4 co-pays. No wonder we’re so damn broke these days.

When our medical expenses are combined with what is taken out of Matt’s paycheck for health insurance, we are paying exactly the same per month on medical expenses as we are on rent ($1175).

Saw the doctor again today for a follow-up. Still sick. Bacteria and congestion just aren’t clearing up. I’m back on antibiotics for a month.

At least I’m not pregnant.

Two months after The Great Sick of 2009 began, I’m still sick. Still running a fever off and on. Having migraines almost daily. Had a CT scan done of my head; there’s still congestion in there, and in my lungs, too. It just won’t clear up. Husband thinks the apartment is trying to kill me. He could be right; it isn’t the first time one of my apartments has done so (see 2000 in Pittsburgh). I’m weak and achy.

I’ve gained another ten pounds after two months of bed rest, which has brought me up to a whopping 180. I haven’t weighed this much since the asshole psychiatrist at St. Elizabeth’s put me on heavy anti-psychotics (at which point I got up to 195). On top of being sick, I feel DISGUSTING. I hate myself. I can’t stand looking in the mirror, seeing pictures of myself. I can’t stand leaving the apartment. As in, I’m fucking anxious like social phobia like back to my 14-17 age span. I can’t stand people looking at me. I don’t want to talk to anyone. I hate even going to therapy. I spend forty-eight hours being anxious, sick to my stomach, panicking before every shift I have at work (fortunately only once a week). I fantasize about home-made liposuction and a complex gyaku ebi tsuri shibari position whereupon I’d be not just hog-tied and reverse suspended but also have my throat/neck attached to my feet in the suspension. Me and body issues, I’m not doing so well these days. Hell, I’m doing AWFUL these days. I haven’t felt this bad about myself since the summer I turned 14.

Other than the body issues and physical sickness, things are dandy. No one who isn’t a mental health professional or who hasn’t been through similar issues would understand this, but despite the last paragraph, I’m not actually depressed. I KNOW depression, and it’s a 24/7 disease. My self-loathing and anxieties don’t occupy my mind 24/7. I’m able to think about things that make me happy and to find enjoyment in them. I only feel hopeless about 25% of the time and only think about hurting myself about 5-10% of the time. It’s not ALL dismal, but the grimness is definitely present in my mind.

It’s kind of like knowing you have rodents infested in your home, but for some reason you just don’t get around to getting rid of them while they’re alive. Then, one (at least one!) dies. The smell gets really bad and by the time you work up the energy to actually remove it you discover you can’t find the damn thing. Wherever it is, it just sits there rotting, the smell getting worse and stinking up your entire home. You’re able to go about your business but you’re always aware of the smell — it follows you, sticks in your hair. You can go to a party or a bookstore and the smell will go with you, reminding you that you’re not quite right — and reinforcing the idea that you shouldn’t get too close to other people because they’ll smell your problem. When you’re at home, you’re alone with the stench, so you focus on it, obsess over it, worry about how to make it disappear. You’ve got dead rat(s) in your psyche and basically the only way to clear them out is to get a competent exterminator (professional help) or to tear up your entire abode until you find the offender (have a complete breakdown and then painstakingly put the pieces back together). My therapist hasn’t really been very helpful this time around, so I seem to be leaning toward the latter.

5am. The insomnia may have passed enough by now to allow me to sleep. My body is a pharmacy, but there is no prescription for a cure.

Sometimes I think my life is just one long FML submission. Don’t make me laugh, dudes, ‘cos that makes my chest hurt worse. Har har.