Friday, August 15, 2008

Today's Diary: The Man on the Train

Retired Educator, here --

I am in an odd place, and by that I do not mean merely living in Tintin-world with a quasi-fictive diva, La Belle Bianca Castafiore, my darling intrepid Fred, and three very wily cats -- always half-stuck in Marlinspike Hall et (ce qui est beaucoup plus important) dans la Tête de Hergé, qui est, d'ailleurs, très décédé.

Quasi-fictive -- what do I mean by "quasi-fictive"? Have you ever heard La Belle Bianca Castafiore belt it out? Do you really have a clue as to how "belle" she is in "ce miroir" -- how captivating is her laugh? No? Then check yourself, my friend, check yourself! The tree, it falls in the forest -- the one hand, it claps.

Since December or January, I have been fighting an infection which translated into daily fevers and sweats, pain and general misery. Since this was an addition to an already difficult mix of SLE, CRPS / RSD, multifocal AVN, and adrenal insufficiency, I haven't been, ummm, well. Finally, my white count fought its way out of the 13,000s and the 15,000s, making its way to the 17,000s -- the platelet count went bonkers -- and so on. In spite of several visits to high-dose-steroid land, the pain and inflammation were not self-limiting or even slightly improved. So I was sent to my favorite orthopedic surgeon to determine whether one of my three joint replacements, or one of my three reconstructed joints, was infected. Yesterday, after managing to finally unearth my gallium scan results, it was declared a fait accompli. The right shoulder is the offender.

So I have been in this weird, strange place of fever and fiction, dread and denial. I am not sure that I can go through the process of losing that prosthesis, being further limited in what I can do. I am already living this vida loca from the perch of my wheelchair.

I maintain a diary and while a part of me knows this is nothing but an intentional confusion, some days, I want the diary to speak on the blog. The interstices, they have always fascinated me, even -- no, *especially*-- in my academic life -- which, I'd best acknowledge, is as dead as Hergé's tête.

Public blithering, always a pleasure. En tout cas, this is what I wrote today, in diaryspeak:

dear diary,

i sat down to purge my soul and instead got hung up thinking about an album by the roches. it must have been one of their first, as most of the songs were written around 1979. ah, yes, it was their first. that LP once felt like the soundtrack for my pretty awesome and full life. with the help of heavy denial, amnesia, hard drugs and heavy metals, it still can!

that was around the time that i both worked 40 hour weekends (...) and had a side gig working nights at a convenience store. the fact that i was also going to school full time ought to be more important but somehow it just sits there like an overweight, exhausted factoid. i was sharing a house with the woman i still call my best friend, all current evidence being, unfortunately, to the contrary. we were a tad bit wild, so it is safe to say that my approximate 60 hours of work a week plus my 21 semester hours probably saved my sorry ass. it turned out that she wasn’t actually *enrolled* in school – she had dropped out and was spending most of her time waging war against corporate america (she is iranienne). [ha! neither assertion complements the other! what a hoot that i had a moment of thinking the one danced with the other!] still, we managed to meet up most weekday afternoons in the foreign language department lounge – i thought we were meeting after classes! in reality, who knows what she had been doing all day beyond passing bad checks to buy such household staples as cognac and fresh flowers.

not terribly domestic (or domesticated), she was famous for waxing and polishing the twisting wooden staircase to our second floor. i was well-known for almost breaking my neck upon said stairs.

she saved my convenience store job on several occasions. perhaps it was due to a slow build up of fatigue, perhaps i just really hated that job, but i developed a serious pathological aversion to the task of cleaning, straightening, and filling the cooler section of the store. it was cold, it was creepy – when you are the only one there and it is 2 am – everything is creepy! i began to leave it a sad mess, as my dedicated manager quickly noted. few things escaped her jaundiced alcoholic eye, except the occasional bank deposit bag that she tended to leave on the hood of her car.

romy began driving over and doing the cooler part of the job for me! bless her sweet bones! the real gift was one of company. i betrayed little of the fear that some nights obsessed me. after an incident that ended with me chasing away four or five guys intent on robbery (don’t ask. to this day i don’t know what possessed me! i was so angry that they would even *think* of robbing “my” store. harrumph.) – i was happy for her company. if my manager had ever come in... ah, but did i mention her jaundiced alcoholic eye? i could easily just have cued romy to switch off the back cooler lights and waited her out – luckily we never had to do that.

we did, one night, have to escape two idiot guys (sum doods) who were not stellar citizens. they wanted admission to the store of Convenient Wonders, but i had closed. romy and i headed for the pristine 1965 baby blue cadillac that was to serve as our cushy ride home -- only to find a flat tire.

lucky us, we had the two yahoos to change it. they were three sheets to the wind (someone tell me of that phrase's origin.) but still focused enough to realize that they had two pretty girls, and that one of them was kinda foreign looking. small detail... this was during the “hostage crisis” in iran. romy did not advertise her background, her home. relatives and friends of hers in the states had been attacked, and calumnied.

so our sum doods played twenty questions and by the end, we had them convinced that romy was CUBAN. they had a brief offer of persian, but did not seem to understand the term, and kept arguing that she looked like an “island girl,” and the island heavy on their little minds was cuba, and only cuba. to keep them happy, we interspersed some spanish in our witty conversation, encouraging them to “andale, andale, ariba!” with that there tire change.

if my memory does not fail me, little miss anti-everything actually worked in the cotton fields for one or two weeks that same summer. it was a magical summer of possibilities – we were at an age where we successfully confounded world fears with dastardly daring, panache, and other-funkily-worded grand attitudes. it would take me many pages to write enough that the sexual energy of that time could be distilled into the one, or two, right words. Quelquefois, il n'y a pas de mots justes.

anyway... the jobs! the hot, sweaty, elevating and demeaning, safe and dangerous work – comingling with our existential confusions, and our out-and-out joy in living. my mind goes to the roches’ plaintive mr. sellack:

Mr. Sellack
( Words & Music by Terre Roche )

O Mr Sellack
Can I have my job back?
I've run out of money again.
Last time I saw ya
I was singing Hallelujah
I'm so glad to be leavin' this restaurant.

Now the only thing I want
Is to have my old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.

O Mr. Sellack
I didn't think I'd be back.
I worked here last year
I came when Annie
Was going on vacation
And I stayed on almost till December.

Now the only thing I want
Is to have my old job back again.
I won't be nasty to customers no more.
When they send their burger back
I'll tell them thatI'm sorry.

Waiting tables ain't that bad.
Since I've seen you last,
I've waitedfor some things that you would not believe
To come true.

Give me a broom and I'll sweep my way to heaven.
Give me a job;
You name it.
Let the other forty-million three-hundred and seven
People who want to get famous.

Now the only thing I want
Is to have that old job back again.
I'll clean the tables;
I'll do the creams;
I'll get down on my knees and scrub
behind the steam table.

i won’t drive you all crazy with my demented trip down memory lane with the roches... i actually did not start with mr. sellack – no, i began with a pity party driven by the refrain of i am trying not to have a bad day...

it was another night of not sleeping, of actually fighting my way through some kind of dense, heavy fog of fatigue – hearing myself begin to snore, trying to relax and go with it – but twitching back to wakefulness – afraid of sleeping? it was hot because my fever would not *quite* break and i alternated between sweating and burning dry, and because our demented cat marmy has decided to literally stick to me.

and i came into today ungrateful, full of dramatic suffering. i also had to contend with more cat piss – but that doesn’t fit the heroic theme of my wounded travails... thank god fred was sleeping... it gave me time to get over myself somewhat.

as a result of the beginning of this rapid prednisone taper, i was hit with major gastro-intestinal upset and backache, plus a headache. i don’t *do* headaches very well. i also fear addisonian crises -- having had three of them when fighting infections in the past. you've no idea how stupid it feels to completely forget about your adrenal insufficiency and end up in a crisis.

so i started trying to clean up my pitiable pity-party – and into my feeble head sauntered the roches... and the train.

The Train
(Words & Music by Suzzy Roche)
I sit down on the train
with my big pocketbook
the guitar and a sugar-free drink
I wipe the sweat off of my brow
with the side of my arm
and take off all that I can
I am trying not to have a bad day
everybody knows the way that is
Even though my baggage and I
are using up a two person seat
I'm not trying to be funny
but the guy who sits down next to me
is even bigger than that
we are overflowing out of the seat
I can't look at him
he doesn't look at me....
My face is pressed upagainst the window
and through it I can see
the reflection of the train
I spy on the big guy
sitting next to me
he's drinking two beers
and reading the New York Post
trying not to get in my way
everybody knows the kind of day that is
He is miserable
I am miserable
we are miserable
can't we have a party
would he rather have a party
after all we have to sit here
and he's even drinking a beer
I want to ask him what's his name
but I can't cause I'm so afraid
of the man on the train
it has become my pity-party theme song. we’re all of us screwed up and scared, why can’t we turn and share all that we know we share?

because we are all so damned afraid of the man on the train.

retired educator

Monday, August 11, 2008

American Idyll: We Continue our Journey

(la photo, elle vient du photographe tw qui dirige un blog qui s'appelle American Idyll)

It is necessary that to you I whisper. It is perhaps possible that you alone do not know of my deep sorrowful suffering with the mal de tête terrible. Yes, my adoring public, moi, I am a migraineuse. After all of the médicaments and the careful avoiding of the light and of the sound, it is an addition good to look at the pictures merveilleuses of this place the Américains call so correctement the Grand Canyon. This blog, it is become my blog the most favorite when La Belle Bianca Castafiore, moi, or I am in the pain très profond or I am not making the sleep. Quelquefois, simply the looking at is a cure.

Pain and Oversize Pink Frames

Oversize Pink Frames by Linda Farrow for Luxe
PRICE: $525
505 Greenwich St.

Retired Educator, here. La Belle Bianca Castafiore? Wouldn't you know that she is a migraineur (proprement dit: migraineuse)? And so it is hand-to-forehead, sigh-then-moan, a red-lipped pucker (Chanel Rouge Hydrabase Creme Lipstick in Red N°5) and these big old pink-framed dark glasses, all topped with that blessed paisley turban that announces her migraines like a neon sign. Quel douleur, quel désespoir profond, quelle souffrance! Néanmoins, je ne peux pas la convaincre qu'elle serait infiniment plus heureuse dans sa propre chambre! I cannot convince her to retire to her well-appointed, restful, easily darkened room that just happens to be at the opposite end of our cozy Marlinspike Hall. No, she prefers to suffer in plain view.

I find myself humming quite a different version of her favorite refrain:
"Je ris de la voir si souffrante dans ce manoir!"

In the midst of this mini-petit-micro pain crisis, I checked my correspondance to find the sainted Jim Broatch calmly at work, connecting people with CRPS / RSD to all kinds of possibilities out in the world. It is so easy to lose oneself with this disease -- not just by deciding to saw off one's arm one Saturday afternoon -- but by losing social interaction. As hard as it is to leave a protected environment and risk being jostled, pushed, stepped on, or -- my personal favorites -- slapped on the shoulder or given that well-meaning warm hug by the requisite Church Lady, we have to go out there or totally give in to a life of pain, spasms, contractures, and depression. So God bless Jim and his talented minions for their constant assault on our laziness and fear!

Here is the latest e-alert with details about a recruiting study -- one of the few I have seen that explicitly includes those of us with CRPS Type 2. I was starting to get an inferiority complex and I think we can all agree that I don't need another complex...

Study Currently Recruiting: Neurotropin to Treat Acute Dental and Chronic Neural Pain

Neurotropin to Treat Acute Dental and Chronic Neural PainSponsored by the National Institute of Dental and Craniofacial Research (NIDCR)

Purpose: This study will examine the effectiveness of the drug neurotropin in treating acute pain after tooth extraction and chronic pain after injury to a limb or a large nerve.

Individuals who meet the following criteria should apply:

Three groups of patients will participate in this study: 1) dental patients undergoing removal of impacted third molars (wisdom teeth); 2) patients with chronic regional pain syndrome type 1, or CRPS-I (also called reflex sympathetic dystrophy); and 3) patients with chronic regional pain syndrome type 2, or CRPS-II. CRPS-I is pain that develops after relatively minor injury to an arm or leg, but lasts much longer and is much more severe than would normally be expected. CRPS-II is pain resulting from injury to a large nerve.

Candidates will have a history and physical examination, blood tests, electrocardiogram and, for dental patients, oral examination and dental X-rays to confirm the need for third molar extraction.

Participants will undergo the following tests and procedures:

Patients with CRPS I and II will receive an individualized regimen of physical therapy and standard treatment to control their pain. In addition, they will receive neutropin or placebo tablets for 5 weeks, then no trial medicine for at least 1 week, and then the other trial drug for the next 5 weeks. That is, patients who took placebo the first 5 weeks will take neutropin the second 5 weeks and vice versa. Neither the patients nor the doctors will know who received which drug during the two intervals until the study is over.

Patients will complete questionnaires about their pain, quality of life, and ability to perform daily living activities. They will have various tests to measure pain (such as sensitivity to heat and cold, to an electric current, to a mild pin prick, etc.); to provide information about changes in their condition (such as tests of range of motion of joints and limb size); to measure blood circulation and sweating in the arm or leg (such as measurements of blood flow to the limb, skin temperature, and sweat production), and other procedures.

National Institute of Dental And Craniofacial Research (NIDCR)
9000 Rockville Pike
Bethesda, Maryland 20892 United States

Patient Recruitment and Public Liaison Office1-800-411-1222 TTY 1-866-411-1010

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.