Sex, Mortality, Age, and Illness: I'm in my 30s

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Location: United States

It's everything I want to tell people when they make small talk and profound talk, but I often can't. Sickness, sex, and the process of dealing with aging parents feel unspeakable and sometimes unreachable, but they sure aren't here.

Saturday, December 31, 2005

Holiday-Induced Stupidity

Holidays turn me into such a grunting, monosyllabic dork. "Uh" becomes an intelligent statement. And that's without all my drugs. Except crack - crack might help me on the personality front during all this happiness shit. I should mention that I am sober through all of it. Perhaps that is what kills the joy, I'm not sure. When an oncology staffer mentioned that she didn't know how to get into the holiday spirit this year, my favorite bobble head recommended gin. I'm puzzled by the onslaught of ritual that everyone seems to know about parties, getting knackered, and being polite only to people's faces, which shouldn't be a surprising disclosure from someone who can't figure out how to keep her shirt on during basic human interaction. Not that this is a bad thing, mind you. I'm losing the ability to make nice-nice at loud social situations where everyone is happy to go home, anyhow. I think this is a virtue, but that's exactly what Miss Confuckinggeniality would think. Uh. Or happy new year!

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Thursday, December 29, 2005

Fluid to Body Memory

nasty sink Originally uploaded by smalldogs.

Evidence of suffering may be reasonable and foreseeable; watch where you step. Today was a trip to chemoland, where I drove while dad talked about one of our fav subjects: boxing, the great boxers spawned by Philadelphia, and injury as a matter of course in a fighter's life. "Sugar Ray Robinson killed a man, Tim Doyle," Bobblehead said. "He even had to appear in front of a Senate committee where they were grilling him and asking him, 'Didn't you know he was in trouble before you hit him again?' "Sugar Ray was a smart guy. He said, 'Senator, my job is to get people in trouble.' That ended it." Today I leave my dad in the waiting room to get his bad local journalism fix. I glide into the treatment area where I never feel my feet hitting the floor. I can see things are stressful and terse for both patients and staff. They are short-staffed today, thanks to an oversight from an agency. Service is slower. Infusion recliners seem askew. Even with these problems, I have still found the best staff I have ever encountered; they actually find veins when no one else can, and they can tolerate my whiney responses to needles. I pick my recliner, the one between the pharmacy window and the nurses' station. I throw my coat on the chair before sitting. As I turn to plunk in the chair, I lower my purse to the floor. That's when I see not droplets, but a puddle, a true puddle, complete with a few splatter marks, of blood. I put my purse on my lap instead. It isn't bodily fluid anymore. It's a trip to my own infusions where vein after vein after vein deflated or ruptured, running dry and rejecting the IV. My worst was the day I screwed up my prednisone, taking it literally minutes before my IV insertion. It was my own fault. With each attempt at a vein, I screamed. One scream was worth the work: the IV took, and I squeezed my dad's hand through it. Later that evening, I overhead him say he thought I had broken it because it hurt him so badly. Pain begets different types of strength. The nurse wasn't sure whether that vein was a false hope, so she left the needle in a bit with my arm tied off at the bicep. The blood continued to ooze. The pressure was drowning; the air felt like water. It was the best and smartest thing she could have done for me. The point was to see if the vein could withstand the pressure and get a good blood return. Later I overheard my dad tell someone that he hadn't seen so much blood shoot from a vein. When I asked him about it, he said he wondered what was wrong, why they would make me bleed out like that into a gauze pad when my veins were shot and throbbing. He wondered about the pain, whether it would finally work and be worth the gruesome test. I could picture the nurse explaining the bleeding and pain: "My job is to get people in trouble." The bleeding had a purpose. I saturated the gauze pad. The nurse removed the needle to thread in the catheter. The IV drip started. Finally I had my meds for the next hours in that vein without it collapsing.

All of this I remembered, fingering my purse's zipper and carefully placing my feet out of reach of some faceless (and apparently nearly veinless) patient's frustrated suffering.

Photo credit: "nasty sink" by smalldogs (click on the photo to see more of this artist's work on flickr), who is a published writer and the owner of Small Dogs Press. Permission obtained for use.

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Sex and Gender: The "F" Words

Nuns, What can I say Originally uploaded by Year of the Monkey.

Madonna and whore.

I've failed at both, most likely because those identities are rooted in terms like "womanhood," "femininity," and even "femaleness," terms that don't quite suit who I am. Womanness is a class that felt like a requirement for the major rather than an elective that I chose because of the natural fit and passion for the subject. My dream last night confirmed it. I was in school again, somewhere with the class offerings of a university but with the Immaculate Heart of Mary nuns of my grade-school years teaching all classes. My fourth grade teacher, Sister Maria of the Holy White Face (she called herself that - I couldn't nearly make up anything that...Catholic), was teaching a course called, "Women, the History," and I was registered for it. I couldn't remember choosing that class or signing up for it.

I kept seeing my classmates in the hallways, knowing they were in the class and attending it regularly; they behaved, took notes, and did the homework, but I never went. One woman who seemed nice offered me the notes for the lecture; while I yes-ed her to death about the notes, I knew I would never claim them from her, never use them, never care. Toward the end of the dream, the nice woman asked about my feelings on the final exam. There was one? I obliquely knew that there was one and that I accidentally, on-purpose slept through it.

I continued through the hallway, walking with both relief and sadness: I knew I would not take the class nor the exam and wouldn't force myself, although the idea of a big F on my "permanent record" didn't sit well with me. I don't like failing, at times even when I think the challenge is shitty.

I was going to fail in femaleness, and I knew it. I courted it. That is when I encountered Sister Maria of the Holy White Face in my dream, looking as pale and cold as a penguin waddling on ice. She gave me some serious Nun Face (ask me to demonstrate this in the midst of boob theatre) and let me know that I had fucked up but good. "Go to ____." She gave me directions that I couldn't hear, but she was sending me to a place where I could complete forms to take the test. I took a step in the direction her harsh stump of a finger pointed, only to nearly trip over myself as I turned and shouted at her face, "I just don't have to." I had failed at womanhood, even with other women offering to help me learn, and while this defeat - a defeat that I had essentially chosen through each decision I made - wasn't easy, I wasn't going to have it any other way.

Photo credit: "Nuns, What can I say," in the gallery of Year of the Monkey on flickr (click on photo for more of this gallery). Permission granted. Work identified as public domain.

Wednesday, December 28, 2005

No Sniveling

Child Pose Originally uploaded by Be Still.

"NO SNIVELING" was the bumpersticker on the car in front of me as I dragged ass to Staples after calling the outpatient oncology suite for methotrexate tomorrow.

Yesterday I did dead lifts at the gym with a 20 pound barbell in each hand. Put them down, pick them up again, breathe, stare in the mirror, put them down. In time, the infused vein bulged.

By last evening, new bruising rose the surface. It reminded me of the way wine spread through a new white tablecloth. The fresh bruising finally brought relief from the pressure, a sign that the healing was really starting. It usually takes two weeks to get over the worst of it, given the other meds.

Tonight I was tempted to poke at it in the same way you tongue an aching tooth, but then I realized, NO SNIVELING.

Photo credit: "Child Pose" by Be Still on flickr (click on photo for more of this artist's work) and on her blog, Be Still. Permission for use.

Tuesday, December 27, 2005


A friend (Sue) remarked that losing a parent is like losing your compass. It is not as easy to find your direction. There is no more generational line between you and mortality.

Tonight, my dad gave me a picture of him that he found in his drawer. When I get a decent scanner or hook up my current so-so one, I'll show him to you. He is about ten and giggling in the picture, ever the consummate pretty boy, one of the reasons why he got the crap kicked out of him when he was young.

He found the picture while flipping through his high school yearbook, looking to find the faces of those who recently died. His clock is running out, and I am losing the path.

As virtous men passe mildly'away, And whisper to their soules, to goe, Whilst some of their sad friends doe say, The breath goes now, and some say, no: So let us melt, and make no noise...

[From John Donne]

Monday, December 26, 2005

A gift

Ink is blood Originally uploaded by DrJoanne.

This was the best gift I received this holiday: a poem from Silvis Rivers, who posted it to my profile at flickr.

For You Jnnburk :

At the place of the

Dark tongueless tongue

I met the last spirit

Of the self

Life had once made it strong

And it learned the final kiss

And this

Was acceptance

And the loss of bliss

I never knew what to say

When I met the void's face

I only knew

The privacy

Of my anguished space

So what was worth saying

As my soul

On a warfield blacked ?

Only a strange star of

Diary and texts

Could I offer

As the last shell lands

By my shaking courage

And as my fear expects...

Then sister of pain

All walk the muds at last

We shall know them

When the doors

Of our diseases blast

But we shall fight

For our lives first

For we are born

Oh yes ,

Out of a galaxy's thirst ....

Some of you is witnessed with a bow .

Deep respect ...Silvis Rivers ..

Silvis Rivers' profile is here with a link to his webpage here.

Photo credit: "Ink is Blood" by Dr Joanne on flickr (click on photo to see more of her work).


shards of glass Originally uploaded by kinsiekins.

There are not shards of glass in my arm. There are not shards of glass in my arm. I wonder if I click my heels three times, I can get to the place where words create reality through the force of will to believe.

After years of prednisone daily, my veins are like origami made of rice paper. The drip of Aredia is somewhat rough on the veins, and the throb can last intermittently for up to two weeks. Last night, unexpectantly, the infused vein swelled and up popped three strange-looking bruises right along the vein. I might have brought that on myself. Force and will. Force and will. Yesterday I went to the gym. Regular push-ups were not enough. Instead of keeping my body parallel to the floor as my arms pumped, I hooked both ankles over a support that is as high as my waist when I am standing. The result is much more resistance to the arms during the push-up. I did 45 of them and swore to myself that I wouldn't care if the flesh ripped clean off my arms.

Photo credit: "shards of glass" by kinsiekins on flickr (click on photo to see more of the artist's work).

Sunday, December 25, 2005


Some things are just plain tacky no matter what the context. Today I drove to the deli with my favorite bobblehead for our family's Christmas meal. We've decided that the effort expended on cooking and cleaning can be turned into a bill at the deli, and this way no one gets second-degree burns. There I was confronted with an odd specimen: the Pimpomatic Suburbanite, who was throwin' down the style with plenty of (somewhat discolored) bling in each contour of cartildge in his ears, on his watch, and on his key chain. None of that topped the oversized Santa Claus hat, emblazoned with silver glitter: "JINGLE THIS, BEEYOTCH!" It was the attitude that read: "Heeeyyyy baby, I got the hook-up right here: Cletus got me second row seats for the Monster Truck pull, and I just know you'll come to my crib afterward for some Funyons and wine in a box."

Saturday, December 24, 2005

Where is my body?

DSC_6045 Originally uploaded by junku.

My feet don't appear to be anywhere on the ground. It's not quite 24 hours after Aredia, a so-not-longish infusion at the outpatient infusion center. It looks like a manic yellowjacket unleashed some serious whoop-ass on my forearm. The vein is a distinct purply salmon tributary, swollen and thrown into relief against the white underbelly of my arm. My head is somewhere. Maybe it's under my covers still or hovering above the toilet looking for extra toothpaste. I can taste chemical in my mouth. It's Christmas Eve, and I am running around in shorts. There is something very wrong with that statement on the East Coast. I have to brave Best Buys now to get my sis her prezzie. I wonder if it's socially acceptable around the holidays to post warning quotes on one's forehead with a red sharpie... "Don't push me. I am not okay." -"Jumpers," Sleater-Kinney

Photo credit: "DSC 6045" by junku on flickr (click on photo for more of this artist's work).

Friday, December 23, 2005

Welcome to Sickie World

Head Off Originally uploaded by stanley.

As I drove to the oncology infusion suite today, my dad asked me, "Is your barf blog getting many hits?" I told him my decision to share with all of cyberland the stuff I put in emails to friends and in certain password-protected Word files. There are plenty of people who have a sense of dignity and reserve (or perhaps shame) about bodily functions.

I'm not one of them.

Photo credit: "Head Off" by stanley at flickr (click on the photo to see more of this artist's work).His website is Stanley Design.Permission obtained for use.

Skin crawl

If my skin crawls right off my body and into the kitchen of its own accord, I wouldn't be surprised. I had my Aredia infusion today, complete with pre-meds before the IV. At some point, I expect to feel like my body and head are somehow in proportion to each other.

A letter to my ex about enough

I don't know Originally uploaded by camil tulcan.

Dear D.,

Nakedness can change boundaries. There's my unremarkable first premise. Hopefully that's as obvious as a bare breast. You know me well. Cliches are the worst, but therein lie the truth(s). That's another premise. I'm telling you about cliches because I'm about to drop the motherload on you, D.

Sometimes love isn't enough.

That cliche just HAD to happen. I promise I'm not shoveling sentimentality in your path like so much rotting compost. This letter is not about sentimentality; this is about sleeping alone now, by choice and by necessity.

I know you would have stayed through awful times, but I had to leave... Because while you might be okay with the intimacy involved in navigating sick waters, I am not, particularly when I am the one with less power, fewer options, and more barfing. Because I have so many people who invade my space during illness out of necessity (e.g., nurses), I had mixed emotions about the level of access and intrusion that could come with our future.

Because someone who leaps on the role of caretaker might have other, less noble motives besides love, like control and the resulting emotional security that is ultimately predicated on false power dynamics. Because you had a tight leash, and I don't think love involves wearing a metaphorical collar. Because sometimes going through it without companionship is okay. Because illness won't cause me to insult someone by "settling" for that person. Because this was one of many issues with you where we could not find a comfortable place in each other's gravitational field. Because "hard times" are as inevitable as thunderstorms in July, and transcendence is a choice. Because it is my choice. Because staying with someone out of fear of being alone or out of fear of feeling pain alone is not good enough. Because there are many ways of partnering with many people who come into our lives (sometimes including sex, sometimes not) to meet needs and to find love. Because some souls are always going to flicker more like restless horses than hearth fires. Because I'm one of them.

Photo credit: "I don't know," by camil tulcan at flickr (click on the photo more of this artist's work). Permission obtained for use.

Thursday, December 22, 2005

When he is the passenger

Said to my father while I am driving on Broad Street:

Bobblehead bunny Originally uploaded by isogloss.

"Stop doing that. I don't drive that badly. Those are potholes and big bumps. I can't help it. You are NOT a bobblehead. Stop that." While on 21st Street, when my eyes are glued to the idiots coming out of Wawa and my peripheral vision still works: "I can see you doing that with your head again, ya know. Stop that. Those are grooves in the road. I don't have anywhere else to go. Don't bobblehead me."

Photo credit: "Bobblehead bunny" by isogloss on flickr (click on the photo for more of this artist's work). See the blog at isoglossia. Permission obtained for use.

Roadkill Seeks Motivation

Uglydoll Originally uploaded by What What.

'Tis the day after methotrexate. With less hormonal activity, I am not a walking (and sleeping) zombie. In fact, I did two loads of laundry before 8 a.m., and submitted a rough draft of some writing to my boss.

By 8:30 a.m., I hit the gym for my daily PT. This is a rather graceless act post-meds. My regular gym bag is a white cotton bag that has my keys, phone, radio, Ace bandages, tissues, and pads in it. The basics. It also has a wadded-up barf bag of one variety or another. A little vomit doesn't have to get in the way of some truly good lifting - well, not mine, anyhow. I have learned to save items that might be useful, so today I snatched from the broom closet an old promotional trick-or-treat bag from that atrocious movie, The Incredibles. They have henceforth been named The Chunks.

My little white bag sits next to the bench where I have selected my dumbbells for the morning: 2 ten pounders, 2 twelve pounders, and 2 twenty pounders. I am one step over now, staring at myself balancing and straining in the mirror, feet shoulder-width apart as my shoulders and delts work. Between my feet sits the unfurled, waiting The Chunks bag. This is far more subtle than when I used to drag the big gray trash cans from their regular locations to wherever I was working out.

Photo credit: "Ugly Doll" by What What on flickr (click on the photo for more work by this artist). Take a look at his official website, What What, and the WhatBlog. Permission obtained for use.

The Original

domokun chick orgy Originally uploaded by shboom.

I stand out in a crowd of 9-5 workers.

I don't have the language to describe what it is like to work in order to work; that is, a number of drugs and hours of physical therapy in a day enable me to attempt a "normal" life. That is labor. Being able to work and earn becomes a privilege in and of itself. I may be sick, but that doesn't mean I have to reek of French fries when I come home. Meaningless labor options were the scraps I got from various rehab and vocational assistance places when I first started to investigate training, education, and employment for people with disabilities. I was told that there was no help for a disabled person with significant medical expenses who wanted to go to grad school.

Did everyone who became ill or who didn't win the genetic lottery or who had a traumatic accident get stupid and aspire to underemployment? I went on to my Master's degree and law school anyhow (hellooooooooo, student loans!). No one can survive on scraps, and having rogue white cells doesn't make me grateful for gruel.

Photo credit: "domokun chick orgy" by shboom on flickr (click on photo for more of this artist's work). Permission obtained for use.

Wednesday, December 21, 2005

Domestic Labor

The routine BS of life is still present in mine, even with all this hoopla over illnesses and drugs and barfing, oh yes, much barfing. Laundry is my big chore. I produce quantities of it that overfloweth the bag, quantities that are sweaty, smelly, and craving "fresh scent." I take hormones and steroids that generate spontaneous climatic changes in my body; my skin can feel like it's crawling, or it starts sweating like Nixon's forehead. Either way, it means clothes going off my body and yet another change in a day. That is a lot of panties in a week, lemme tell ya. This does not go over well in an office, yet another reason to find my life in working from home and other environments I can control. I made choices about my three degrees knowing full well that I was sick and that I would need independence and creativity in ways that healthy people never have to face. I can't quite convey to others the quirks of taking daily cocktails of various drugs for systemic diseases that are not in remission. Even skin and sweat pose obstacle courses that require management, accommodations, and energy in a day that healthy bodies never endure. This is me trying to translate to you the realities of a different universe with signals and meanings that might escape you otherwise. Maybe they wouldn't escape you. Maybe you're different. Maybe you're a sickie, too.

Not clock-bound

Time and I have finally made our peace. Unfortunately this negotiated, undulating agreement doesn't conform to any norm according to the Eastern Standard Time zone or to "business hours," which are highly overrated. I show up for work when agreed, more often than not, and meet deadlines as much as any other person. Yet work may start at 2 a.m., or whenever it is that pain has let me go back to my life in the outside world instead of being trapped inside my skin.

I can't be bound by a 9 a.m. commitment to be seated at a desk because it isn't clear whether neurologically that will be possible. Conceivably, I could twitch, dance, and puke my way to the train station and to an office, but no one will stand near me at the coffee machine.

This is why I hedge often in answering questions about my life because somehow, "disabled professional" = lazy ass. Time flows differently around me. Much like pain, it is always present, always asking, and always waiting.

Return to Chemoland

Originally uploaded by pierre lascott.

Dad and I will go back to the infusion center where the needle will return to my hip and I will return to my bed, hoping that the nausea not be as thick and soupy as L.A. smog on a humid mid-August day. I am going because I have two choices: get the drug or get sicker. He is going because he has every choice, and he wants to be with me.

Once the fire alarm went off in outpatient oncology as we sat in the hallway, waiting. I told him the image in my head: 20 hooked-up patients tripping over their IV tubes as they bumbled out into the street and got tangled like dogs on leashes. We laugh at anything horrible.

Photo credit: by pierre lascott on flickr (click on photo for more ofthis artist's work). You can see more of his work and humor on his webpage.

Tuesday, December 20, 2005

A Day Close to Deities

Toilets Onthe Road Originally uploaded by LonelyBob.

Apparently yesterday involved more than just lil' ol' me being deeply involved in prayer before a toilet.

Thanks to a wallop of mega steroids and other fun substances, another ill friend said many prayers before her throne, enough that she eventually named the toilet Grace.

Redemption has come in stranger places.

Photo credit: "Toilets on the Road" by Lonely Bob on flickr (click on photo for more ofthis artist's work). You can see his blog here.

Monday, December 19, 2005

I unfortunately have an opinion on this...

ahhhhhhhhhhhhhh Originally uploaded by zengzung.

I am a few seconds away from calling the infusion suite where this week I will get a shot of methotrexate and an infusion of Aredia. I expect Miss Confuckinggeniality to arrive at any moment, and it's not because the hospital staff aren't fabulous - they are, and they have to put up with a lot while remaining graceful. Or at least not bitch-slapping some truly deserving patients. I know I'll be nursing sclerosed veins through the weekend.

Photo credit: "ahhhhhhhhhhh" by zengzung on flickr (click on the photo for more work by this artist). Her blog is here.

Visual Disturbances

I have a personal strobe light show that starts when a migraine has gotten off to a full gallop. Sometimes I swear the flashes are so bright and annoying that others *must* be able to see them.

At 2 a.m.

I prayed. I begged. I was on my knees and belly after the first twitch of an aura hit.

"Aura" is a term that would appear, from sound alone, to impart some angelic or redeeming quality. An aura, the experience, is nothing of the sort, unless by "angelic," you mean the kind of angel that guides you into hurl hell. An aura is a set of symptoms and sensations that let you know something wicked this way comes. I've gotten auras before rheumatoid arthritis and lupus flares, and I definitely get an aura before a migraine, my 2 a.m. visitor. I asked Jesus, Buddha, Krishna, or whoever was heading the graveyard shift to pitch in. Someone was listening.

So far, so good. I have only had my breakfast once, not twice, and let's hope it stays that way.

Photo credit: "Buddha Bounces As I Drive Past Am-Ko" by benchilada on flickr (click on photo for more work from this artist). His livejournal where you can also see his fiction and non-fiction: Permission obtained for use.

Sunday, December 18, 2005

Morning-After Face

self (as Marilyn Monroe) Originally uploaded by zombizi prime.

I so hate it when I fall asleep with all my makeup on. I have surrealist impressionist art all over my pillow. All those fabulous lashes look like hundreds of baby spiders trying to attack my eyes. Now I feel zits coming on: shall we aim for the constellation of Capricorn this time? How about Sag?

Photo credit: "self (as Marilyn Monroe)" by zombizi prime (click on photo for more work by this artist). Read his writing and see more os his work at Zombizi Zero-Six.

Saturday, December 17, 2005

Letter to my ex, whom I saw in the gym last week

frozen hearts Originally uploaded by KeliBlonde.

Dear D.,

You know I have a problem with coats.

If I am going to be working out and sweaty, I don't feel like keeping track of my stuff in a locker (I got ripped off that way, anyhow), and I don't want to funk up my coat either.

The better choice for me, as you observed often years ago, has been to abandon the coat, even in sub-freezing temperatures, and run full-throttle into the gym from my car.

Your suspicions were confirmed by a neurologist you never met in '03: the doctor taped a special thermometer to my hand, round and flat, and gawked at the reading: 54 degrees.

You could have told him that.

They were even colder last week when I came in from the cold.

I could have said "hello" to you or even "how are you?" That is not the m.o. of Miss Confuckinggeniality.

Hopefully you can forgive me for responding to your "hello" by grabbing your bare arm as quickly and hard as I could to see if you would yelp.

You didn't even blink. Thanks for not disappointing me.

Miss CFG

Photo credit: "frozen hearts" by KeliBlonde on flickr (click on photo for more work by this artist). Her blog is Perpetual Blonde.

Integration of the Wolf's Bite

03-KEELE Originally uploaded by rent-a-moose.
I try to embrace the destructive parts of myself instead of distancing myself from them. Considering that my body is both my ally and my enemy through lupus, my path isn't level, let alone readily discernible. It shifts and looks different depending on the angle. This reality of the body has served nicely as a metaphor for my psyche, but that's another meditation. "Lupus" is Latin for wolf. The story behind the terminology is here:
The term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.

I often feel bitten. After the lupus diagnosis on 8.28.98 that brought with it Sjogren's, fibro, and bone disease shortly thereafter, the basic treatment wasn't working. I wasn't one of the 300,000 American women who had the inactive or mild version of the disease. It was apparent that another drug had to be added to Plaquenil, prednisone, Medrol packs, Ansaid, and Solumedrol pulses: methotrexate. I hated needles and was a wimp about them - I still am, but now I know more about trigger spots on my body, ways of inserting the needle, and the proper length of the needle given my weight. As a rheumatology patient, I get doses of oncology drugs at amounts that are far lower than the cancer dose. That's still no picnic. The fact that an intramuscular stick was involved just added salt to the nausea. As soon as the drug was prescribed, I did what I did for every drug that entered my body: I researched it laboriously. I was scared of the increased risk of infections (rightly so, I learned these years, after bizarre bouts with bacteria and prolonged antibiotics) and scared of what the drug could do long-term to my fertility. Then the dreams came. I was walking through a building with what appeared to be an atrium or rotunda. I now recognize this building as my dream interpretation of the main lobby of the local hospital where my diagnosis was made. In both dream and reality, you can stand in the lobbby and look up to see all the stories of the hospital. I can look up and see the first floor, where the cancer patients are, or to the sixth floor, where the neuro patients are. In the dream, I have shackles on my wrists with chains leading to wolves on either side of me. We are bound together. I'm fearful of my death and that the wolves will turn on me since they have nowhere to go but to attack me. They don't. They move with me like any dog that's relatively new on a leash: basically following along but also tugging and pulling, restless but guided. That has, in fact, been the reality of my walk with lupus, although the wolves have sometimes been in charge of the lead and dragging me on my ass. Ass times were my worst times with neurological symptoms, neuropathies, and brain inflammation.

It's an uneasy balance at times, like when two natural leaders learn to ballroom dance with each other. Learning how to dominate and overcome my pain symptoms while being submissive to other symptoms has been my ultimate in tightrope-walking. In the dream, I'm walking through the atrium, wolves both shackled and in tow, and finally winding my way up the floors, when I'm stopped by a figure, neither a man nor a woman, whose message I heard as clearly in the dream as I do now in my head:

"If you ever want children, they'll have to build you a synthetic womb."

It took acceptance to realize that my own womb really wouldn't cut it if I wanted children of my own, and then I began my search into where reproduction, contracts, and technology have met. I've reconciled the fact that being a "true" biological mother doesn't negate my mothering abilities. I wonder about another woman carrying a child made from my ovum and a donor's sperm. I wonder about adoption. I wonder about ways of creating family, not with a primary person - a spouse for lack of better terminology - but with, for example, a childless gay couple I know, or with a very good friend who could make a commitment to raising a child with me.

There are many possibilities, even when shackled to wild things.

Photo credit: "03-KEELE" by rent-a-moose on flickr (click on photo to see more ofthis artist’s work). Her website is MooseRental. She also keeps a LiveJournal with great photos. Permission obtained for use.

Thursday, December 15, 2005

The Disabled Professional

DSC_0890 Originally uploaded by dogseat.

I often feel like I am being chased by limitations and shoved up against a wall by others. I'm a disabled professional. I realize that the politically correct way of expressing membership in this group is “person with disability” instead of “disabled person,” which is called (I believe) “person first” language. Likewise, I’m guessing that I should be saying “professional with a disability,” but that is not my reality. So I'm not doing it that way. Miss Confuckinggeniality I am not. My reality is that my disability comes first, no matter how strong my will or how powerful the medicine. Work, family, and fun all come second. My body has to be functional first to have access to any of those wonderful things, and even then, there still has to be a good deal of flexibility. I’m a disabled professional. That word order perfectly encapsulates what I experience in a day, a week, a year, etc. Yesterday was Wednesday. By the time I came home that afternoon, I realized that I had been in three different hospitals for three different things that week already, and I was headed out the door again for daily physical therapy that helps to maintain my weight and strength and to keep me off a walker. These events don’t make for a 9-5er life. This is a life less convenient.

Photo credit: "DSC 0890" by dogseat on flickr (click on the photo for more of this artist's work). Read his profile and see more of his work here.

Culture Shock

Two cultures.....[version two] Originally uploaded by shadowplay.

I often don't know how to create bridges from the organic realities of my life to what looks like the glossy pages of a healthy person's life. There's a grossness in having to be this tuned into my body, however involuntary it is, and it leaves me feeling as conspicuous as Lurch on a crack binge. The kicker? "You don't look sick." How should sick look? I swear people are watching too much Lifetime for Lobotomized Saps. Sickies are some of the most dynamic individuals I have met. Like everyone else, some look beautiful, and some don't. Some look awake, sad, curious, happy, defiant, and everything else. I don't have something as obvious as my walker on most days now, as long as I stick to the daily physical therapy. Even when I lost my hair and kept the strands, picked from the floor, my brush, and my pillow, in a silver pot like refugees, I didn't look "bad." I styled my hair to cover the nickel- and dime-sized bald spots. No one called me Baldy, and if I didn't have the time or energy to style it, I covered it with something.

Vanity became quite the defense mechanism.

Photo credit: "Two cultures.....[version two]" by shadowplay on flickr (click on link to see more of this artist's work). His portfolio is on his website Shadowplay Images. Permission for use.

Wednesday, December 14, 2005

Relatives of Tidbit: Defeated!

unmentionables c Originally uploaded by lightpainter.
I went to the doctor today with all the usual humiliations, except he was training a new doctor, who sat in and watched everything, so that was a new humiliation. Tidbit, if you remember from an earlier post, is the now-deceased, crazy-making polyp I had pre-bar examination, and it caused my withdrawal from the bar. I was quite certain that "hemorrhage" and "bar exam" were terms you didn't want in the same sentence, let alone in the same day. Tidbit is thankfully a goner. I expected to come home today, prepped for surgery to excise a relative of Tidbit that was spotted on an ultrasound in the ER. I showed up in the ER thinking I had a bad, sudden sports hernia. Here I thought Donovan McNabb and I were experiencing some sort of spiritual/injury connection. As it turns out, I was just being a wingnut. It happens. So much for that theory. The doc today said the magic words as he scanned my ultrasound report, "Ah. Okay. So no surgery." That's a relief, though I regret not being able to try the names I picked for whatever new junkflesh I thought I would be sporting. The winning name: Snausage! As it turns out, the would-be Snausage was a cyst, not a tumor. It's a cyst that has since desisted. *groan* Runner-up names included Button, Pierre, and Bubblehead.

Scene from my Master's in Psych

Yes, I have that degree, and yes, I was a psychotherapist, for a while. Part of obtaining my degree was completing my practicum, which was a year of clinical work in a site of my choosing, with the grad program's blessing. I worked in an in-patient psychiatric hospital, where I learned two things about people generally: we are very fragile and very, very cruel. I was in touch with many grad students. Sometimes we had philosophical discussions. Sometimes I just got in someone's face and started barking. "That can't be normal." "'Normal'" is a word that we shouldn't be using because it implies a set standard of behavior, thereby allowing too many other types of behavior to be unfairly pathologized." "Okay. Is that fucked up then? Because I think that's fucked up."

Tidbit's Little Sister Strikes

The nurse said I have to come in for the resolution of Cyst v. Tumor. I would prefer to stick my head in the sand or cover my ears and scream LA-LA-LA-LA, though I think other patients would stare. The last time I had an intermeddler in my body, it was a polyp that caused crazy bleeding and also caused me to withdraw from the bar exam. I named it Tidbit. YOU try explaining that to the board of law examiners. Depending on what the ultrasound says, you might be hearing another nickname from me for whatever malfunction my body has decided to undertake. Lucifer? I learned at 8:40 this morning that my ultrasound results hadn't arrived at the other city hospital where I see this specialist (actually, a specialist within a specialty, that's how silly it's gotten). I called the local hospital wrangling my results. Last word is that they were in fact faxed to the right party as of 8:45 a.m. Guess who isn't acting like Miss Confuckinggeniality through this?

Tuesday, December 13, 2005

Beyond Spinsterhood

wedding in heaven Originally uploaded by camil tulcan.

I *have* thought about marriage in various forms. I'm opposed to the hype and ceremony. I'm not opposed to the idea of commitment within in certain boundaries, but I'm not sure I want the legalities nor the history of this institution. I don't want to be a bride for the same reason I don't want to be a cheerleader or a pageant schmuck or the head of the welcoming committee or a sorority sister. It's a brand of femaleness that leaves me squicked. Do I sound like Miss Confuckinggeniality to you?

Photo credit: "wedding in heaven" by Camil Tulcan on flickr (click on photo for more of this artist's work). Permission for use.

The bad date

As if all the barf talk hasn't already alerted you, relationships are not easy for me, but they were not easy far before my body became a bomb site for my own white cells. The title of this post, by the way, is the title of the picture to the right by bekon at flickr. I am an INTJ according to the Myers-Briggs inventory. The salient features of this personality are the need to be analytical, a bit detached, not trusting, an inherent skeptic, engrossed in a passion, and often alone to regain energy. None of these things make me a good date. When I saw my inventory profile, I could condense it into one word: SPINSTER! I was relieved. That cuts way down on any dating pressure. My tolerance is pretty low for many demands on my time or energy, even more so now that medical issues get first dibs on them. The idea of investing time to look better than I do and to act on my best behavior for a couple hours seems silly. I don't *like* doing booger checks or seeing if anything is compromising my smile. I have already attempted to battle Visible Panty Line and lost miserably. I don't want to think about someone grading me. Why would I want any of this when I can simply be with friends who just plain love me? The therapist who wrote _After the Affair_ claims that human courtship is the biggest, most concerted act of deception that we as a species regularly perform. Clearly that woman hasn't seen me trying to look like did all my reading in law school. I don't go out, really. I hate bars, though I went to an event at one back in July, '01. That was the last time. I don't drink, and I'm not a big fan of being around people who are drinking. Maybe if I were an alcoholic or desperate, I would feel differently. Last week, a new guy at the gym started to ask me out by being highly original: "Where do you go for entertainment?" "My tv." "No, like bars or clubs?" "Neither." "Are you a Christian?" "No. Not at all. And it's tricep day, so I gotta lift."


axismundi Originally uploaded by camil tulcan.

...which reminds me, since I might be poked and probed for the determination of Cyst v. Tumor tomorrow, I should probably shave.

Photo credit: "axismundi" by Camil Tulcan (click on the photo for more of this artist's work - it will totally be worth it). Permission obtained from artist.

It could happen...

There are days when I am fearful that either the force of the migraines or the puking will blow my face clean off.

Grit Beneath my Lids

The Racetrack Playa Originally uploaded by melastmohican.

Sjogren's syndrome along brings some surreal realities, much like that pic. Eye pain can wake me up. What's happening is the lid is sticking to the eye because the eye is so dry. Sjogren's is an autoimmune disease in which the body immune's system attacks and kills moisture-producing elements of the body. Tears are a gift of the body. When they left, I used lubricant eyedrops at a record pace. Most of the time, immunesuppressive therapy for systemic lupus also keeps Sjogren's trouble under wraps as well, but as with every incurable disease, there are "break-through" symptoms. During the thickness of this past August, I lived in a forest for the first time and enjoyed walks. When I couldn't figure out a sticky pain in my eye, I went to the eye doctor, who sat me down and then scraped globs of pollen off my eye. No tears means less effective removal of irritants. A Sjogren's resource group is called Moistureseekers. It was the first word I thought of when I saw the rock in the pic.

Photo credit: "The Racetrack Playa" by melastmohican on flickr (click photo for more work by this artist). See more of his work and writing on his blog.

The Basics Made Gross, Take Two

... and i go, WTF!? Originally uploaded by nepenthes.

Food is unappealing. Food is effort. I don't invite others along for the ahhhh, expulsion of food, though I fully appreciate's explicit discussion of crap and such. Considering how tedious it is for me to get food in, I don't want others along for that ride either. Drugs can bring on a near-constant level of nausea, as can chronic pain. When pain levels spike, so does my food. Often I work with slow, deliberate bites to resist the gag impulse. I refuse to lose weight. I simply can't afford it. The weight I have gained is too precious and too hard-won *not* to will myself to swallow. That said, most offerings still have the same lurid, gross quality of the "drink" in this pic. I want a magic shot that I can stab in my arm and be done with food for the day. Hunger isn't even an issue, since I don't experience it like other folks do: intense fatigue and nausea will kill that off nicely.

Photo credit: "...and i went, WTF?!" by nepenthes on flickr (click on photo for more work by this artist).

Making Options from Lemons

Sign Originally uploaded by Flips.

Now that the day has been pissed away with nausea and pain, my sleep cycle will be way off, which means choosing to ride out the strangeness of whatever combo of wakefulness and sleep my medicines and body give me. I will be starting my daily prednisone after 6 p.m. followed by the two rounds of Plaquenil and the full daily dose of Arava (20 mg). Dec. 23 will be the Aredia infusion, which means about 3 days of full-on heebie-jeebies. At least I know what the next days have in store for me, and I can work around it. The good stuff: no more huge, swollen, red knuckles. The pain, no kidding, diminished with their size. I remember being 23 and not thinking about my options for irregularity that day. It fascinates me to have experienced different ways of being in the world, but this way often remains unwitnessed and not comprehended. I think even other disabled and ill people have a way of not hearing and seeing what alternative experiences of pain are.

Photo credit: "Sign" by Flips on flickr (click on photo for more work by this artist).

The Basics Made Gross, Take One

Nacho Cheese Originally uploaded by ryanmecum00.

Food has been a problem ever since years of taking medicine culminated after a particularly nasty doctor-approved experiment with compounded, powerful DHEA pills: I barfed blood in the ER.

I never thought I would see anything like it. This is a disgusting tale for another time, a tale that proves again to me that I never do what I believe I will do when the body is clearly being destructed. But that's another meditation. There are consequences from barfing a lot, barfing to the point of bleeding. That means I have to choose to live differently around these consequences, or I can choose to continue to make things worse. Nope, I'm not bulimic. Instead, diseases and medications are triggering lots of things in my body, and the result is Barfomatic Jen. After the blood incident mentioned above and a related visit for some days and nights on the rehab floor of the local hospital, a bunch of doctors worked with me on a diet that embodies what I call hostage chic. It's part iron-clad law and a good bit of hit-and-barf attempts with food. I just finished my bowl of white rice for breakfast with a little salt and nothing else. That's fine by me - nothing tastes as good as the absence of pain and an IV in my hand. I had to learn how to cook and shop for my food needs. Restaurants are really quite the nightmare because so many fats, spices, and oils are used, all of which are big no-no's. That makes a good bit of socializing awkward, to say the least. Food has become like medicine, and since I don't share pill-popping or syringe-filling with others, I now don't like sharing food with others. Since the pleasure aspect of it is largely gone (no more chocolate and sticky cinnamon buns), it is utilitarian, not fun.

Photo credit: "Nacho cheese" by ryanmecum00 on flickr (click on photo for more of this artist's work).

Ahhh, the day after...

Originally uploaded by floorvan.

Acidic, puckered-face, and whining. That's about the sum of it right now. I couldn't get out of bed until 3:30 p.m. This is not a gift. This is the reason why the ADA (Americans with Disabilities Act) was created. If I could be out and up and doing lots of things besides wondering if the back of my head has been cored out, I sure would. If I could better control the pacing of weekly methotrexate with my hormonal cycles, that would be great. As it stands, it is hit and miss, even after these years, which means a day of huddling. Last night, or rather early this morning at 3 a.m., I watched a somewhat well-done teen-angsty movie (_All Over Me_) from the floor in the living room. The back pain was unbearable, and a hard floor seems to help so that I can run through every stretch and exercise any physical therapist has ever taught me. It did help. Shockingly I managed to finish enough work last night that I did not despise myself. That's my standard - generally, I meet it. I look at the amount of work to be done on the book, and sometimes I want to cry, but instead I get angry and riled and hop to it. Because of today's ickiness, I'm fairly certain my doctor will tell me to cancel an appointment with him in which he is supposed to make a final determination on whether I have a cyst or a tumor. One means surgery definitely, and one means surgery possibly. I'll let you guess which is which. It might sound cowardly, but I'm not opposed to waiting until next week to get this news.

Photo credit: by floorvan on flickr (click on photo for more of this artist's work).