I am a disability advocate and work for an agency that not only serves the disability community, but is staffed by people with disabilities. I have several disabilities, one of which is an incontinent ostomy. I do not have control over my bowels, and must wear a colostomy bag to contain my waste. Under Maryland law, ostomy supplies are 100% covered by insurance agencies.

When my employer changed insurance providers on September 1, 1997, I could no longer get the supplies I required to live. I have had my ostomy for three years and this was the first time I had ever had problems. I fought with my insurer for two months before I received any supplies, and at that time the supplies were incomplete. Many of the doctor-prescribed items were denied as unneeded, so I was forced to purchase them myself.

At the time, my salary was $500 a year above the poverty level and I soon found myself in financial trouble as a result. When the few supplies I got at that time ran out, my co-workers and myself went back to battle with my insurer, and it was January before I received more supplies, again not all that I needed.

I was told by my insurer that I was expected to use disposable bags for five days each. Now pardon me for being so graphic, but it's necessary. I work in the public arena, and I was expected to (and this is verbatim) "wash the bags out in the public restrooms that I frequent, walk (I use a wheelchair) to the sink with my ostomy exposed, and finish washing the feces out into the sink, then reattach it to my flange." It would be the same thing as asking a mother to empty a diaper, rinse it out in the sink and reapply it to her baby for five days.

I have systemic lupus, so I also have a compromised immune system. To even ask anyone, let alone a person with immune problems, to use public restrooms in such a fashion, is sheer and absolute insanity.

In mid-April, I finally received a full month supply of ostomy products, but I had been out from work for 2 1/2 months, living in my bathtub, because I had not had the supplies for that long. I even spent a week in a nursing home as a result of this and had another stroke, requiring a hospital stay, because of the stress from this battle.

I am a person who could get the medical benefits I require from Medical Assistance if I were to quit work and go on welfare. The bizarre thing is, I want to work--and I am paying into the system, but cannot get the services I'm entitled to and work so hard for.

I was supposed to have corrective surgery to fix the bilateral spinal implants that "fell out" of their socket and are currently free-floating in my right side. I actually have to push them back inside my body several times a day and night. My insurer has only one doctor they will allow me to see that can do the work on the implants and he is unavailable to see me until the end of May. That is just to see him--I have no idea if he will be able to schedule the surgery then, or if I will have to wait another six months. I cannot stand the discomfort much longer.

I have been told that because of the ERISA loophole my insurer is protected from legal liability for delaying and denying the medical care that I so badly need. I am convinced that if I were able to hold my insurer legally accountable I would be getting more attentive care.

Labels: colostomy, health, health insurance, insurance, medical, USA

 
Chemotherapy: 3rd cycle (2009)

So this is the start of the third cycle of this set of chemotherapy. This time haven't had much of an upswing at the end of the last cycle. Feeling tired. Apart from that, everything went without problems.
Also saw specialist for results of tests and scans. They couldn't find any problems, which is sort of good, though it means we can't pinpoint any cause for my symptoms. Normally they'd do an endoscopic examination to try and see anything that might be there and not shown up, but will wait 'til after chemotherapy. In meantime there's some tablets I can try to see if they make a difference.

I used opportunity of being out to grab bus downtown with assorted medical receipts, including that appointment, to Medicare. Good refund, covered most of the water rates I'd just got. Feeling a little cheered, I caught bus to Daily Planet* Foodcourt and got two bowls of different pho to take home. I can usually get two meals from each. Very nourishing and easy while I expect to feel poorly. Then bus home.

TravelPass is a great blessing for the frail and ill. It lets us get out and do things we wouldn't have the strength to do if we couldn't catch transport for short jumps. I worry the new card system won't be as good — there were nasty hints during previous contretemps about an 'integrated smart card system'.

[Toilet: before setting out; reaching hospital; during chemo; before leaving hospital; reaching Glasshouse (Medicare); GPO/Westin before catching bus; Daily Planet before catching bus. I hope those tablets help.]

* formerly Ernst & Young; might be Pavilion now. It looks like Clark Kent works there, though I don't think it's been used in any of the Superman movies they've filmed here.

Labels: cancer, chemotherapy, medical, quotidian, transport, treatment

[permalink][comment] - posted by Mez @ 10/07/2009 08:24:00 pm

Friday, October 02, 2009

 
Yes, the world does revolve around me (Nero)

Nero Claudius Caesar Augustus Germanicus aka Nero Claudius Caesar Drusus Germanicus, born Lucius Domitius Ahenobarbus, only son of Agrippina the Younger, sister of emperor Caligula and daughter of Germanicus, who was grandson to Augustus's wife, Livia, on one side and to Mark Antony and Octavia on the other. Right in the most prominent aristocratic circles of Imperial Rome.

When Caligula and his family were murdered, Claudius became emperor. After executing his third wife, Messalina, he married Agrippina and adopted the 13-year-old Lucius, renaming him Nero Claudius Caesar Drusus. Claudius only survived a few years, and Nero became emperor at 16, the youngest emperor up to that time.

Nero ruled over "interesting times" from AD 54–68 AD. Although generally popular with the lower Roman classes for a number of measures, including laws favouring them, putting down the Britannic Revolt of 60–61 AD, public aid after the fire of 64AD, and cracking down on terrorist-type groups like 'Chresters', he consolidated much power (and wealth) to the emperor through show trials and arbitrary executions of the upper classes and wealthy 'new men', and slowly usurped most of the authority of the Senate, losing him support in the upper classes.

After Nero's suicide in 68, there was a widespread belief (the Nero Redivivus Legend) especially in the eastern provinces, that he was not dead and somehow would return, like Arthur, the Once and Future King, and others over the centuries. Over the next twenty years at least three Nero imposters emerged leading rebellions. The legend lasted as a popular belief for centuries. He was reviled by Christian writers, however, because of his persecution of the 'Chrestians'.

Nero's rotating dining room uncovered (SMH Pictures? Not a sausage.)

Nero's rotating banquet hall unveiled in Rome (Yahoo, slideshow + video)
news.yahoo.com/ s/ ap/ 20090929/ ap_on_re_eu/ eu_italy_nero_s_dining_room
MARTA FALCONI, Associated Press Writer – Tue Sep 29

Yahoo! links disappear quickly, so here are a selection of others with pictures, videos & background information.

Nero's rotating banquet hall unveiled in Rome (NPR. pix with captions + map)
www.npr.org/ templates/ story/ story.php?storyId=113302798

VIDEO: Emperor Nero's Rotating Dining Room Unearthed (Post Chronicle. a video report and images of the ancient dining area)
www.postchronicle.com/ news/ strange/ article_212259312.shtml

NERO`S ROTATING DINING ROOM FOUND (Italy Online in English, only 1 picture, but more history and background)
www.lifeinitaly.com/ node/ 7955

And a typical Daily Mail treatment (their headline for the new hominid fossil discovery, 'Ardi', is "First ape woman suggests human ancestors may have started walking in pursuit of sex"), slavering at length over Nero's reported sex-and-sadism excesses before concluding with "We can only hope that this time it is not the setting for such unbridled horrors".
Wine, women and slaughter: The truth behind Emperor Nero's pleasure palace
(www.dailymail.co.uk/ news/ article-1217587/ Wine-women-slaughter-The-truth-Emperor-Neros-pleasure-palace.html)

Another Roman excavation - an old port near Rome with some surprising features
Face in the sand: British team unearths Roman amphitheatre at ancient port
(www.dailymail.co.uk/ sciencetech/ article-1217353/ Face-sand-Roman-amphitheatre-unearthed-ancient-port.html
OR
tinyurl.com/y92v37b)

Y'know despite their relentless "UK! UK! UK!, Oi! Oi! Oi!" and tabloid sex, violence & sentiment slant, the Daily Mail at least seems to cover a fair bit of science with reasonable length & depth. By comparison with what I see in Australia & the glimpses of popular press in the USA I get, anyway.

Labels: architecture, heritage, history, links, Roman, Rome

[permalink][comment] - posted by Mez @ 10/02/2009 11:05:00 am

Sunday, September 27, 2009

 
Exciting Picture News

Wheeeee!! Not only am I getting an acknowledged* publication (small, down the back) of that photograph from the previous post (informally titled Dust Day Laundry) in a Quick & Dirty, but pretty, MagCloud occasional issue of pix from the Great Sydney Dust Day called Strange Light: Photos from the Great Australian Dust Storm (very entrepreneurial of Mr Powazek), but made my very first public photo sale! (Through my CafePress store) Haven't seen pic on paper yet, I do hope it prints up OK. There's $US0.50 somewhere in that system that's mine, mine!, mine!!, allllll mine!!! Ha ha ha ha ha ha ha!!
(OK. <quick sigh> Actually, it's ~80% mine after tax, but the full 50c has, like, total personal gloating rights, heh.)

I'm wondering if this might be one example of The Future of Publishing — The post next to that one on Derek Powazek's blog is entitled: How to Publish a Magazine in a Day and a Half. OTOH, it's pretty much a modern version of those early broadsheets about notable events, e.g. a celebrity hanging. On the gripping hand, there are discussable differences as well as similarities.

* Me, bitter about unacknowledged use of my stuff over the years? Certainly.

Labels: dust storm, money, photos, publishing

[permalink][comment] - posted by Mez @ 9/27/2009 12:51:00 pm

Saturday, September 26, 2009

 
Dust Day (23rd September, 2009) in Sydney; Stroke cont.

I raced up & took some photos from my flats' roof, trying to match some of the views I've taken on clear days, plus a few more that I thought looked good. It did have this strange effect — the feeling that "either there's so much stuff in the air it can't get into my lungs, or there's something missing from what is getting in" on my ventures out
that kept them brief.

Here's the link to my Flickr set of the Dust Day photographs.
www.flickr.com/ photos/ sketchesbymez/ sets/ 72157622437316334

One of the pictures has become quite popular, which is pleasing and terrifying in equal measure. (In this Flickr Gallery by Tom Coates, and two ABC slideshows) I've had trouble with my image editor, so didn't put a watermark on any before I uploaded, which means it doesn't always have attribution (snarl). This has spurred me to getting a dedicated little watermarking program. It's like backing up data; so many people don't really get it working until they've had that first really bad experience.



There are a lot of other pictures and descriptions online. The Terrorgraph had a whole multipage supplement about it the next day.

Adelaide is *seething*, 'cos they've been getting days like this for years and haven't had nearly so much attention <sound of
sulking>, and Melburnians are pulling out their memories of the spectacular cloud that hit them back in February 1983, a week before the Ash Wednesday Fires — see Australian Bureau of Statistics (www.abs.gov.au) on Natural Disasters.

Health Update: Friend's Stroke
He is definitely improving, but until they put in a different tracheotomy setup, still can't talk. He can write, but poorly, and is exercising his working right side. I assume there's some physiotherapy for the leg & arm he can't move voluntarily. They've been able to put him into a sort of super-armchair on wheels (Regency Care Chair) so he can go out into the lounge near the lifts to get a change of scene, look out the windows (the ward ones face blank wall) & have 'private' talks. He still gets frustrated & depressed, understandably; as do I, & his other friends.

History Tour Links
Last weekend, a friend helped me get through an ABC-linked history walking tour. This is the photo album on the 702 ABC Sydney Facebook account (702 ABC Sydney) [open, public, you don't have to sign in or be registered on FaceBook], called Slurry Hills and Razorhurst History Walk; also a note on their blog. Good, but laid me up for 2-3 days — mostly recovering Just In Time for Dust Day, which affected my breathing rather more than I expected. Most of the time not having my full lung capacity isn't that noticeable.

Labels: friends, medical, photos, stroke, Sydney, weather

[permalink][comment] - posted by Mez @ 9/26/2009 10:24:00 am

Sunday, September 20, 2009

 
Another Stroke

The youngest and last of my mother's brothers & sisters died suddenly this week. If my calculations are right, he would have been the same age father was when he died, but it sounds like he was spared the slow, suffering, decline in hospital. Of course his family are devastated. This leaves only one aunt on my father's side alive of my parents' generation.

Not much to add when it comes to either chemotherapy or my friend. The 3-day test for the new specialist was a bit of a trial, physically. I did use part of it to help get in training for today's big expedition — a 2-hour history tour of the crime haunts of Surry Hills and Darlinghurst, specially dealing with the notorious Kate Leigh and Tilly Devine. (Here's a link to some photos of the tour on Facebook, taken by the local ABC person along on it.) Pretty well washed out by chemotherapy and tests, so I was worried if I'd make it through, but with a bit of luck and care, and leaning on another friend, we got through without too much trauma.

Slow progress with friend's stroke. One of our big helpers, a childhood friend of his, was away for a week. I was first knocked about by Uncle's death, then the chemo and other stuff. Next week his partner will have to go back to at least part-time work. She wants to make up time now so she'll have hours up her sleeve when she's needed later during his rehabilitation. He was understandably pretty down at heart.

But I'm told they were able to take him out in the chair to the 'lounge area'. At least you can look out the windows (ward windows look out on a blank wall) and get away from 24-hour presence of the other patients.

Plodding on. More slow steps for us both.

Labels: cancer, chemotherapy, family, friends, medical, mourning, stroke, treatment

[permalink][comment] - posted by Mez @ 9/20/2009 10:32:00 pm

Friday, September 11, 2009

 
Rolling on in Earth's diurnal course: Chemotherapy; Friend's stroke

Health Update:
My chemotherapy continues; unpleasant but not very horrible, so far surviving. Around the peak of immune suppression was keeping kitchen and bathroom stuff and hands rather neurotically clean, away from crowds and other people. Using drugs to suppress some of nausea, diarrhoea — able to go to opera (Graeme Murphy production of Aida) — but very tired. Drinking lots of fluids (soup + water, juices, milk), as recommended to counteract effect of cytotoxin on kidneys means I have to keep back & forwarding to toilet a lot.

Friend with stroke, 4 weeks on is conscious! He has fair movement and strength on one side, very little on the other. Still tracheostomy and nasogastric feeding, because his swallowing isn't good, but breathing by himself (yay!). Is doing exercises, or at least practising movements of his limbs, head and throat. He seems frustrated at being unable to speak & tiring easily. Both understandable.
I feel helpless & inadequate. Am hoping to be

a) healthier later;

b) able to help with further rehabilitation.

Labels: cancer, chemotherapy, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 9/11/2009 09:13:00 pm

Saturday, August 29, 2009

 
Friend's Stroke: fortnight report

Two weeks on, he's half-opened one, then both, eyes, and shown some more responses. Still has a nasogastric feed tube, lots less IV stuff though. Breathing 'spontaeously', if through tubes into a tracheostomy, means they will soon move him out of Intensive Care so the machines he's not needing can be used by someone in direr need.

So, progress! Small and slow, but some. We push for more.
Thanks for all and any who've wished him well.

For my birrhday we took in some cake & other goodies, had a couple of bits ourselves, then sliced up the rest and scattered it around for the nurses and relatives in the Unit. Felt good to share; they've a hard job.

Labels: anniversaries, friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/29/2009 11:30:00 pm

Thursday, August 27, 2009

 
Friend's Stroke: flickers of hope

Yesterday evening A half-opened his eye on the non-stroke side! I was there.

I wasn't up to getting out today, but it's reported that he opened *both* eyes and seems to be somewhat aware and responsive.

I've followed other young people's slow, difficult recoveries in my online acquaintances, so this gives me hope, though also a dread of how hard it will be. (Different to mother's series of strokes, getting worse & worse. Also seen in other older people.) But there are examples of lack of recovery too.

Thinking/hoping this intensive care is Medicare-covered. Further treatment and rehabilitation, dunno.

Labels: medical stroke friends

[permalink][comment] - posted by Mez @ 8/27/2009 08:30:00 pm

Tuesday, August 25, 2009

 
Metastasis: Chemotherapy 2009, first cycle

First Carboplatin treatment this morning. Tired beforehand, so I slept through some of the infusion, though the form-filling kept me awake more than I wanted.

After it finished, I went up to the Intensive Care Unit to see if I could visit A in the half hour before they close to visitors 1 - 3 pm, but they were busy with him. It may have been doing or preparing for his tracheotomy.

Most times I've found it takes some while for the unpleasant effects of the cytotoxic drug(s) to start being felt — it might also be the drugs they give you at the time — so I used the energy and being out already to get supplies, put money in bank, etc. Weather nice, so I planned to take my book and maybe some drink or food and sit with the cats, but time and energy ran out. Slept, then went to visit A in the evening.

Labels: cancer, friends, medical, stroke, treatment

[permalink][comment] - posted by Mez @ 8/25/2009 09:09:00 pm

Monday, August 24, 2009

 
Friend's Stroke: waiting, hoping, fearing

Eight or nine days now since friend A. had cerebral haemmorrhage (on right, don't know details). Aneurism evacuated, tube now on left to relieve pressure by draining fluid. He's some spontaneous breathing & body movements, but no eye reaction yet. They're balancing morphia and hypertension. We talk and touch and massage him, but I just don't know what the odds are.

He's only in his mid-forties and so much potential still for him to achieve more excellent things. And I'm just re-starting chemo, so desperately hoping I'll be well enough to spend the hours with him I am now.

I'm so afraid we'll be making some kind of “end-of-life” decision about him (please let it not be, please no, please).

So asking for some good vibrations thisaway, if you have ones to spare. I'll be in and out, depending on sleep and other obligations.

Labels: friends, medical, stroke

[permalink][comment] - posted by Mez @ 8/24/2009 01:36:00 am

Tuesday, August 18, 2009

 
Friend's Stroke: shock, horror, confusion

A very good friend is ill. For years he's known of and been treated for idiopathic hypertension. Seems to run in the family. Sometimes crazily high BP; rather drug-resistant, despite a good diet and definitely not being overweight. So over time many, many tests looking for causes, trying different drugs. It looked under control with diet, exercise, drugs. All either free, or at least affordable, with Australian Medicare and PBS (Pharmaceutical Benefit Scheme). Dentistry a different story.

He's been nagging me to get off my tail and go off to enjoy myself because of my probable future bouts of cancer, and was angry that I hadn't managed anything during the recently-ended remission. So I did head off for a weekend to Canberra (details posted separately), got off the train on Monday afternoon and found his partner, another friend, waiting on Central Station Concourse.

On the weekend a blood vessel burst in his head. Ambulance straight to our local, excellent, hospital. Tests, scans, operation, ICU, 'nother operation adding 'nother head-tube, ICU, re-scans; 2 visitors at a time. He's still unconscious/under sedation. The medistaff are helpful, kind and fairly communicative. I'm trying to give whatever practical support his partner may need (food, laundry, music he or she might like, books for waiting time, ** any aid suggestions welcome **) and taking spells at bedside.

It's fearful and deeply saddening to see him half-head-shaved, tangled in an ugly reticulation of lines and arcane wires and tape and tubes. Fearful for his easy physicality and fierce intelligence; fearful remembering despair and depression that came with my own pain, weakness and struggles with disabilities in my own illnesses. But, thank Whitlam & Co., all Labor governments, and continuing general Australian public opinion, we don't fear financial disaster too, nor being thrown out/unplugged for non-payment. Thinking of that because I'd been following & commenting a little in the debate in the USA on the problems in their health care, particularly the insurance & payment arrangements.

Labels: friends, medical, stroke, travel

[permalink][comment] - posted by Mez @ 8/18/2009 03:51:00 pm

Monday, August 03, 2009

 
A Birthday Sonnet (Even Keats made this thought seem a little whiny)

Sonnet

: "If I should die some night and never see
Dawn's light, my email, and my morning tea,
I face the thought with equanimity,
In fact, it would be worse for you than me.
Not that I want to die and turn to clay.
I'm only half-way through, I want to stay,
I want more years, more books, more chance to say
I love my life, my work, my friends, my day.
But I would know for sure the mystery
Perhaps go on to live again and grow
But even if there's nothing, I would know.
My death I view with calm philosophy
It's other people's death that makes me rage
Weep, grieve, and curse, demand another page."

Jo Walton (papersky: BlueJo)

Labels: anniversaries, mortality, mourning

[permalink][comment] - posted by Mez @ 8/03/2009 02:02:00 am

Saturday, July 04, 2009

 
American Poem

I AM the people—the mob—the crowd—the mass.

Do you know that all the great work of this world is
done through me?
I am the workingman, the inventor, the maker of the
world’s food & clothes.
I am the audience that witnesses history. The Napoleons
come from me & the Lincolns. They die. &
then I send forth more Napoleons & Lincolns.

I am the seed ground. I am a prairie that will stand
for much plowing. Terrible storms pass over me.
I forget. The best of me is sucked out & wasted.
I forget. Everything but Death comes to me &
makes me work & give up what I have. & I forget.
Sometimes I growl, shake myself & spatter a few red
drops for history to remember. Then — I forget.

When I, the people, learn to remember, when I, the People
use the lessons of yesterday & no longer forget
who robbed me last year, who played me for
a fool — then there will be no speaker in all the world
say the name: “The People”, with any fleck of a
sneer in his voice or any far off smile of derision.

The mob—The crowd—The mass—will arrive then.

— Carl Sandburg

Labels: poems, poetry, USA

[permalink][comment] - posted by Mez @ 7/04/2009 02:53:00 am

 
This comes under "We Told You So"
Women stretched to snapping point
Adele Horin
July 4, 2009

The 1.5-earner family became the predominant form between 1997 and 2006, from 35 per cent of all couples with children under five to 46 per cent. But life for parents grew harder and less equal. By 2006, all parents were more likely to report feeling stressed

"There was reduced gender equity and strikingly increased reported time pressure," the study found. Based on 772 families in 1997 and 652 families in 2006, and using Australian Bureau of Statistics data, the research will be presented at the Australian Social Policy Conference next week.

It shows part-time working mothers put in as many hours overall as full-time working mothers - when paid work, housework and child care were tallied - and worked longer than their 1997 counterparts.

The Howard government promoted the 1.5-earner model with family tax policies that provided most benefits to single-earner families and to couples with an 80:20 income split.

.

Labels: politics, society, statistics

[permalink][comment] - posted by Mez @ 7/04/2009 01:14:00 am

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This is my blogchalk:
Australia, New South Wales, Sydney, English, photography, reading, natural history, land use, town planning, sustainability.