The Days & Nights, Slants & Twists, & Wobbly Meanderings of a Woman With Rare & Incurable Neurological Disorders
Living Obliquely
Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually. Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects. About 33,000 Americans are currently disabled as a result of this rare neurological disorder. Not one person with TM will ever know their prognosis. I happen to be one of them.
I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.
No. Not you! You, my sisters and brothers and distant compassionate readers of true interest, stay with me.
The word gets out. It's a life. It shouldn't have to be...
VULNERABILITY
And another, more psychologically based phrase, your...
MORBID CURIOSITY
You've missed the whole point of this blog. I'm writing about the rare and disorderly - my rarity, my non-compliant body, how all this affects me... us - for this very reason. To end our feelings of vulnerability in the realm of those that are currently "whole", whose appointment books aren't littered with doctor's names and treatment, surgery, and procedure schedules, and personal reminders of who we are and what we do and what we did and what we should do. Knowledge, this shared intimacy, this bond I've created with you, should go beyond morbid curiosity, beyond pity and judgment. You should move beyond your fear of the different, the moderately deformed; our hearts are more whole, built and rebuilt, cemented and carpenter hinged, soldered and gorilla glued - so strong what's broken becomes unbreakable. I'm talking bones. I'm talking heart.
We, the different than you, the vertically challenged, the numb, the pained, the beat down, the dishonored, the disenfranchised, the differently abled are more able of heart than your life experience can provide.
To survive these lives is to be a superhero. We are ninjas and black belts of the earth and sky. We are divinity and soul that fills oceans and earth. We are richer than Oprah will ever be in dollars or sense [spelling intended]. We are reincarnations, multiple lives within however many years our bodies have sprawled this planet. We are astral projections. We are global realizations. We are strong. We have self-respect. We have accomplished the impossible. We are alive and smiling. We appreciate life more than you, and we probably enjoy it with more vim and verve too.
We deserve to be treated with respect.
So, if you've come here to "research me." To decide if I'm worthy of your time, a 2nd date, your consideration, your friendship, your purchase (of my artwork or neurochic)... you've come to the wrong place. This is for people who care. This is for people who want to learn more, to feel what we feel, to think what we think, to know what we know.
I just skimmed a one-sided, but thought-provoking articleby this title, the fill in the blank being Multiple Sclerosis, but this is an important question for all of us chronic illness-ers to ponder.
Perhaps it brings us a moment of miniature joy, perhaps a wholesome cry, perhaps an epic realization of hallucinogenic shamanic ritual proportions that makes it all make sense. Regardless, the amount of comments on this article are filling quickly - I'm comment #34 and will paste it below - and I'd love to read, correction: we NEED to hear from those of you that choose to add your perspective in the comments section on author Julie Stachowiak, Ph.D.'s About.com page for above mentioned article, or just here among friends.
While the article and responses are like a straight line that needs some curves and hills, we - especially the stoic soloists in disease management - need to speak out. And we need not drop our heads in abandon (unless you're too tired to hold up your head) because we are alone.
I've always preferred collaboration, but I also craved the opportunity to be given the award of a solo for my extra sweat and infinite effort. It meant I arrived, graduated to another level; I was good enough; worthy.
I got used to working my ass off - literally - from a young age. As a dancer, if you want to make it, that's what you have to do. As a sicko, at a young age, or golden year, to be a true survivor - someone worthy of an encore, a cacophony of "bravo"s from the balcony, bouquets of flowers thrown at your feet from strangers and admirers - you have to be tough as shit wittling it's way from the cage of a stomach with gastroparesis.
Sick, I know. But isn't that the point?! And isn't it the truth?
While, I've lost my need for stage presence, (and ability...) for perfect quadruple pirouettes or catapulting my body over another, I'm an olympian when it comes to navigating the triple sow cows (made up ice skating move) of my sicko-ensemble. I'm used to scraps and people's leftovers; to being the banged up tupperware that gets thrown in the freezer before it rots for good, or just tossed -tupperware and green fuzz - in the trash.
Do I see myself as someone else's trash?!
Yes and no. We've all been there. Trashed, pushed aside, forgotten, discarded, dumped, dejected, disowned by the people we love or like or like a little, just because we have something or things that are out of our control per their onset, but mostly in our control how we carry ourselves through the journey. Often times it doesn't matter which way we stumble - with grace or grumpiness; we're still left with our diagnosis (ses) as our only friend(s). Obviously, we need to broaden our social circle and not our disease panel, though sometimes the latter's inevitable, or both may go hand in hand... you never know.
SO WHAT HELPS?
Long rambling, short, I'm sick of being sick to other people and my appointment book. But I'm not gonna bitch about it beyond that. I have a therapist for that. (Highly recommended.)
As promised, here's my #34 comment. I hope you become a number on this page too - even if you're another hubby-is-my-savior-&/or-deserter-answer-er. We've all been screwed by the medical system, but here's our chance to turn that screw into a positive screw, and I could really use a positive screw... or two, or three, or.... That would really, really, really help, and it's doctor's orders.
MY RESPONSE COMMENT
Here's my sunny side of one of my neuro disorders response to Dr. Stachowski's article.
(34) NeuroDetour says:
My story is a little different. In 2008 I was partially paralyzed by a rare demyelinating disorder called Transverse Myelitis(TM), which is sort of like the opposite of MS, and has a 2-year recovery period. What you are left with in the end is what you have and 30% of us remain wheelchair- or bed-bound and on feeding tubes. Because of its rarity, my insurance denied coverage to the limited and integral treatment I needed, calling it “experimental”. When there are only 30,000 people in the US with a disorder, of course everything is experimental.
During our legal battle, I lost most of my functionality and I went 99% blind. Nine months after my initial TM diagnosis, my doc called with an apologetic tone; my MRIs and LP proved MS, which was caused by the TM.
Although my first disorder with an “ending” (but it turns out I’m in the 3% that has recurring TM) turned into a lifetime without prognosis, in many ways this diagnosis has been a relief.
The treatments for MS, such as IVIg & Plasmapharesis, overlap with the limited treatments for Transverse Myelitis. With my MS diagnosis, I never again (for the most part) had to fight the drug companies – for major or minor treatments, surgeries, meds. When in doubt, having MS has made my struggles with my other neurological disorders simplified. I have a total of 3; 2 of which are rare, therefore getting treatment approval is a secondary battle to battling the disorders themselves.
And living with chronic illness, any access to a simplified life is a good life… a better life.
2 Gimps With 1 Stone - a horrible thing to say, but i'm spent and rushed and neither of those are good for 1 gimp, let alone 2 with or without a stone. Tweet me anyway, please?
That's me as Old Mel in Bodiverse. And the Gallery Logo... how'd that get there?
[insert mel]
And I'm reviving my NeuroDemon-Abandoned "ongoing" project Bodiverse. Reincarnated as a 35-minute non-video-art-video-art work. The short description is: the body; the verse; the universe. The long one's all over the pages of the Bodiverse blog. Just google it, and save me the time of links and all that jazz.
After all... I've been IVIg-less since Medicare kicked in May 1. So I can't even see what I'm typing.
Keep on, keepin' on.... for details about this awesome group exhibit. [Hint: There's a surprise for you at the end.... not a box of chocolate, but almost as expensive!]
[insert gallery]
Oliver wanted the artists to have free reign when developing work for “Femme” – an expression both foreign and innate - that conjures thoughts, emotions, images, experiences, and memories as inclusive as they can be exclusive; as intimate and commonplace as they can be political and controversial; timely, post-contemporary, and historical; ideals and ordeals of gender, femininity, or feminism.
The variety of mixed-gender artists tackled this broad subject as variously as the artists themselves, resulting in a thought-provoking, intimate ,and universal mixed media exhibition of “Femme” expressed through painting, photography, sculpture, glass, multimedia video, performance, and installation art – as well as the possibility for the on-looker to become art in the show. “Not be be missed,” says James Oliver, gallery owner.
Featuring Artists
Pete Checchia • Karen Gibson • Anthony DeMelas • Nick Cassway • Ernie Sandidge
Melanie Miller • Jesse Beamesderfer • Rick Fichter • Gretchen Diehl
Antonia Cianfrani Brady Sanders • Zito • Benjamin Sperry
Denise Fike• Erin Etcker • James Oliver • Tom Buildmore
[insert Mel: and don't forget]
Opening Reception
June 18th, 6PM-10PM
The exhibit will run through August 20th
II.
Seeking STRONG BODIES
to be in a GIMP THIS! Art Installation.
TOMORROW!
Also @ James Oliver Gallery's Femme Opening Reception
This is what's posted on Craig's List. Get out your reading glasses, press zoom, just be you're super human self, or click on the image and go right to the original post.
However you swing your cane, feel free to respond if you know a STRONG & WILLING body, I mean person:
could i take any more short cuts?!
Thanks all! Pass it on if you can!
Yours in Neuroism, Art, & Lights that are way too bright, Melanie
Obama faces rare defeat on health help for jobless
By RICARDO ALONSO-ZALDIVAR, Associated Press Writer Ricardo Alonso-zaldivar, Associated Press Writer – Sat Jun 12, 11:19 am ET
WASHINGTON – If Chuck Lacasse had gotten his pink slip four days earlier, Uncle Sam would have covered most of his family's health insurance while he looked for a new job.
But Congress allowed emergency health care assistance for unemployed workers to expire May 31, and seems unwilling to renew it despite pleas from President Barack Obama.
Not three months after lawmakers passed his $1 trillion insurance overhaul, Obama is facing a rare defeat on health care at the hands of his own divided Democrats. Moderates have rebelled against adding billions more to the deficit in a treacherous election year.
"The same Congress that spent all this political capital trying to get people health insurance is going to take a crucial benefit away from unemployed people," said Andrew Stettner, deputy director of the National Employment Law Project, which advocates for the unemployed.
On June 4, Lacasse lost his job as advertising director for a company that makes nutritional supplements. He'll soon have to pay the entire $1,500 monthly premium to keep his family covered under his former employer's health insurance plan.
Until May 31, under Obama's economic stimulus law, the government provided a 65 percent subsidy. That would have lowered his cost to $525.
"This really isn't about welfare," said Lacasse, 40. "It's about buying people some time. In a position as specialized as mine, it would have been nice to know that I had some time to look for the right job." He lives near Green Bay, Wis., with his wife and two children.
Democratic Sens. Bob Casey of Pennsylvania and Sherrod Brown of Ohio have introduced a measure that would allow the program to continue helping people who get laid off through Nov. 30. That would cover Lacasse.
The lawmakers, who are seeking a vote this coming week, want to attach their nearly $7 billion provision to must-pass legislation that would extend unemployment benefits and make changes in dozens of federal programs. But a similar proposal was dropped from the House-passed bill, and Senate Democratic leaders also omitted it from their version.
"I'm concerned about it," said Washington Sen. Patty Murray, a member of the Democratic leadership. "There will be people who fall through the cracks."
Under a 1980s law known as COBRA, laid-off workers generally can stay on their former employers health plan for up to 18 months, provided they pay the full premium plus a small administrative charge. But with family premiums averaging about $13,500, the cost is prohibitive for most people.
That changed under the 2009 stimulus bill and subsequent expansions, which provided a 65 percent federal subsidy for up to 15 months. Workers laid off through May 31 can qualify for the benefit through their former employer.
"It has been a significant program and it has helped many middle-class families to keep their health insurance at a time when maintaining health insurance was difficult because of the high rate of job loss," said Alan Krueger, the Treasury Department's chief economist. Official statistics on how many people were helped have yet to be compiled, but Krueger estimates that as many as one-third of eligible unemployed workers enrolled in subsidized coverage.
Melanie Miller, 34, who suffers from debilitating neurological problems, said the COBRA program allowed her to maintain her independence after losing her ad agency job. "Without the subsidy, I probably would have had to move back and live in my mother's house in the basement," said Miller, an artist who lives in Philadelphia.
With the unemployment rate hovering just under 10 percent and with 15 million people looking for work, advocates say it's premature to withdraw assistance.
"We're recovering, but we haven't recovered fully," said Casey. "Now is not the time to pull up the ladder on people who are hanging on, in some cases to the last rung."
Some conservative Democrats, however, say they don't understand why the government should subsidize workers who lose jobs with employer coverage and not others who are equally deserving — for example self-employed people priced out of the private market.
"You're paying 65 percent of (one) family's health care costs, but the neighbor next door, there's no help for," said Rep. Dennis Cardoza, D-Calif. "So we're picking and choosing. There's an inequality there between our constituents." Not to mention that Congress has treated the program as emergency spending, adding its cost to the deficit.
In Marietta, Ohio, boiler operator Neil Davis is facing the loss of his job as the coal-burning power plant he works at prepares to shut down for good. Davis, 33, has marketable skills but he's unsure how quickly he'll be able to find comparable work. His wife is a stay-at-home mom raising two elementary-age children.
"Being able to have coverage at an affordable rate, we wouldn't be afraid to take the kids to the doctor if they get sick," said Davis. "The economy might be getting better some place, but I don't know where at."
___
Associated Press writer Andrew Taylor contributed to this report.
###
PS Don't forget to come see me tomorrow (Sunday) at Art for the Cash Poor, Booth 54 (see above nav bar for picture link).
I recently decided to participate in the Walk MS Event - even tho I'm having my worst RSD falre up ever - and I'm inviting you to join my team, Mel's Neuro Detour.
WHY I WALK...
I have MS. I have cousins with MS. I have friends with MS. I am part of a much larger community of people with MS and their care takers or support systems.
I don't even know...
if I'll have the strength to walk on May 2
if pain will require me to be in a wheel chair to complete the walk on May 2
if I will not be hosiptalized on May 2 for a relapse, flare up, or other complication
I believe in the forthcoming cure. And I want it to happen in my lifetime. Living with MS and other neurological disorders f***ing sucks.
There. I said it as plain and true as can be.
MS is one of several neuro disorders that have stolen my identity, my independence, my dance, my mind, my life as I knew it and invisioned it.
But, I'm going to walk or roll on May 2, even though I can't predict what condition my body will be in that day. Why? Because, as my brother gave me this mantra, "my life sucks, but I rock," and I'd like to erase that first phrase from my mantra.
I hate asking for help, but I'm asking you now. PLEASE HELP give me and every other MS patient their life back by joining or donating to my team today. Help me have hope.
BY CANE OR BY WHEELCHAIR, LET'S WALK AND ROLL...
I'll be at the Philadelphia Art Museum on Sunday, May 2. And I want you to be there with me, either in person or in spirit (but the only way your spirit is allowed entrance is if you donate goshdarnit).
JOIN MY TEAM DAMMIT!
By joining my team, you'll be signing up not just for a day of fun (sounds corny doesn't it? That's because this is MS Society copy :) ), but also for a celebration of the great things we can achieve when working together for a common cause, a cause that unfortunately affects me directly. Each step we take brings us one step closer to a cure - and closer to a world free of MS, one of several neurological disorders that have completely altered my life.
And if we get an MS cure, we'll likely have a Transverse Myelitis(TM) cure too - except the FDA will hold back on that life-wroth-living-giving gift for years probably, while insurance companies reject TM-Only-Neuro-Diseases because it's "experimental", and the medical company that gets the patent first makes millions off of desperate TMers who are willing to pay our of their pocket for a cure they deserve and earned.
TWO CHOICES: JOIN OR GIVE OR BOTH (I guess that's 3)
To get things started, I've donated $75.32: 75 for the year I was born, and 32 for the age I was when my neuro detour began. That's a lot of money for me, as I'm on a fixed income, but it demonstrates how meaningful this cause is to me.
(why) YOU SHOULD SPONSOR ME
Because...
I walk with a cane.
I've had to use a wheelchair and a walker.
I want to be cane-free, pain-free, hospital-free, AND it would be nice to have people stare at my face instead of my boobs...I mean cane (but really I think 1/2 of the 21lbs of RSD swelling went to the boobage arena).
I want to stop sleeping my life away.
I don't ever want to be a burden to my friends, family, or society.
I feel like a burden.
I hate asking for help.
I'm often too weak to open the doors to my apartment building, or too spastic to perform daily activities like dressing myself.
I'm an awesome fundraiser, and we're almost in the Top 10 fundraising teams.
Because...
I'm judged by strangers when I speak funny, or my body spontaneously spasms, or my hands shake uncontrollably, or I can't find the word I need to complete my thought, because I lose my thoughts mid-thought, because they see a burden and not an independent woman, because I deserve a better life than the one I have.
AND, because I'm awesome! :)
But I could be so much more awesome if the MS Society and MS researchers have the funds to find the cure, or at least make our lives a little less painful, a little more enjoyable.
The National Multiple Sclerosis Society will use funds collected from Walk MS to not only support research for a cure tomorrow, but also to provide programs which address the needs of people like me living with MS today.
Because we choose to walk for those who sometimes can't, because we choose to donate to the MS Walk, we are getting closer to the hour when no one will have to hear the words, "You have MS...[insert phrase ending:]
a) you're not marriage material, I'll just stand [insert name] up"
b) oooh, is she contagious?"
c) is that girl/boy with the cane drunk?"
d) how could our mother leave my daughter with you...in harm's way?"
With extreme gratitude and a bit of hope, AND slight embarassment for the bits of copy included in this post that were written by some cheesy senior copywriter from some ladidah ad agency for the National MS Society,
Melanie Miller, AKA Neuro Soup Glamour Gimp
PS If you would like more information about the National Multiple Sclerosis Society, how proceeds from Walk MS are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org
PPS As of last week I raised more than double my original goal, so I tripled it. AND, we surpassed our team goal of $2008 (the year of my neuro detour entry), so I raised that goal too. So don't leave me hangin' and make me look a fool[sic re: phrasing].
PPPS If you need to be guilted into joining, supporting, making a difference watch the following:
Yes, I admit it, I am one and I see them too, those buggy bug-like-snake-like-and-occasionally-verminesque dashes of absolutely nothing that dance like kittens on catnip, and according to "Expert Advice", there are no medications or supplements proven to treat or remove floaters - neither the human kind or the trippy eye kind. Yep, that's definitely me. (And so is the fact that I find this site on Now You Too Can Live A Life Without Floaters LOL funny.)
So, despite the shite (the rhyme was beeeegggging me) of life as a neuroquadrilogical (a neuro-ite with 4 disorders), apparently I, as a human I, am neither removable or medicable/ˈmɛdɪkəbəl/Show Spelled Pronunciatio[med-i-kuh-buhl] (this is a real word).
Note that this post is being written at 8:30AM, and it's not the I'm waking up for work, or my morning power walk, or jaunt to the coffee house to get the best seat by the cute guy. No, it's the...
Why?! you ask with mouth agasp astonishment, even though I witnessed a beautiful sunrise.
You just got out of a 9-day hospital incarceration, Melanie! you proclaim (I write redundantly, duh, there's an exclamation point, BUT think of that as your memory on XYZ neuro disorder, and maybe you'll understand me a little better).
You had a Lumbar Puncture, EMG, a hemoglobin count of 6.4 and an iron count of nearly nil, 2 blood transfusions, and a 2-hour fistula surgery (see gross video below) in your RSD arm, which became both visually unappealing and very RSD-y post-op requiring IV morphine (ahhhhh) to quell the pain! you castigate with love and a tiny dose of compassion.
You have RSD, since when did you have RSD? someone out of the cool people's in-the-know loop, inner-looplessly interjects.
That's the 4th -osis in the neuroquadrilogical grail, some do-gooder, yet somehow cool enough to be in the loop-er whispers under the raging voice of the still unnamed and determined sleep-begetter as though he OR she were Morpheus in the flesh.
Your osteoporotic /ˌɒstioʊpəˈrɒtɪk/Show Spelled Pronunciation[os-tee-oh-puh-rot-ik] bones need to dream, and even tho it's contraindicated that your osteopenic bones hit-the-sack too, hit that sack, baby, I said hit it, you shout with growing fervor, fever, and a bit of kinky excitement.
What I meant to say is, umm, errrr, you need, I mean, really need, your beauty sleep, you whisper trying not to sound perverted, invested, or ridiculously and/or inappropriately judgmental.
Here's the dealio. Up, Down, Sideways, or Snowfallen, YOU SHOULD be sleeping!!!! you prod as if I chew my cud. As though you could even play a doctor on pay-to-be-on-it TV (I think with a 3-snap-Z).
And now you're nagging. And all sickos; friends and family of sickos; and doctors, nurses, and caretakers of sickos know - don't nag the sicko.
But wasn't that a fun way to let you know what I've been doing for the past week and a half!
DIG MY FLOAT To clarify my opening statement, I am undoubtedly a floater. I float between home and hospital. I float between reality and the occasional hallucination or delusion (don't worry, now I know it's NOT 1985). Meds do not work their magic on me, so I float between sleep-time and wake-time, all of which is in-pain-time. My life as I knew it or want it to be is somewhere afloat, so I also float between treatment plans, treatments, med changes, flair ups, relapses, and/or exacerbations. I lay on my couch more often that I care to admit as though I am floating, nothing touching my skin, causing me pain. And my train of thought is super duper floaty (sign: I'm stretching the metaphor...STOP HERE).
IN ADDITION TO THE ABOVE RANTS AND INTRODUCTIONS,
Due to a recent flair up that included insane pain down what felt to be my swallowing path, the inability to exhale or speak or swallow, dizziness, and some other strange happenings, my fabulous and famous neurologist, Dr. Schwartzman, had squeezed me in last last [sic] Wednesday for an emergency visit. The result:
Back to the hospital I go. And I was admitted Monday for what was supposed to be a few-day stay. I know by know to use a variety of complex mathematical equations to estimate the actual duration of my hospital life. I had my fourth spinal tap, which coupled by watching the video below now makes me certified to begin giving LPs to any sucker; got my 2nd round of blood transfusions; my 2nd EMG of my life (the worst test ever) tho I was spared the needle jiggling in the nerve ending 2nd half; had my regular IVIg therapy; had consults with a hematologist, my rheumatologist, a podiatrist (don't ask), and a couple other 'ists and 'ents; and a bunch of other stuff including having way too many hot flashes for a gal my age. I have a lot of follow-ups in the forthcoming weeks. And hopefully, they'll be able to figure out the cause of my new-found chronic anemia.
Author's Note: This is sickly funny.
I almost made it the entire stay without a roommate (yippee!). And just as my mother had warned the staff as they began preparing the room for a 2nd body while I was in surgery Monday, crabby Melanie returned from the OR and reared her wormy, bruised, apple-ish head, but nothing that a hug couldn't overcome...and a xanax and migraine meds. I could go on about my lost sanctuary, and it would be funny, but it would be mean too, so I'll bite my fingers, and just say, you had to be there (and I might mean that in more ways than one).
On Tuesday, I was discharged from the hospital by a soon-to-be-remiss resident without any scripts, including one for pain meds for the fistula surgery,
(Wikipedia: In medicine, a fistula (pl. fistulas or fistulae) is an abnormal connection or passageway between two epithelium-lined organs or vessels that normally do not connect. It is generally a disease condition, but a fistula may be surgically created for therapeutic reasons.)
Author's WARNING: This video may be deemed gross by people as hardcore as even me. I lived through it, but thanks to modern bliss, I didn't see it.
prescription-strength iron for my red-blood cell-less bone marrow, or that Sally Fields medicine or something like it for my oustish steroid-chemo habit that has left my hips and spine as delicately vitreous as any kind of wine glass - cheap, semi-cheap, restaurant-grade, or imported from the glass capital of Europe expensive - in my incapable hands.
But, most importantly, as always, my mother was there for most of the journey of what may be my 5th or 6th (I've lost count) extended hospital stays, as were a select few of my most supportive (and available) local pillars who visited as often as daily (can you believe it!), and many more by phone, text, or mental telepathy (i.e., I'm giving you an out...take it). I made a new and amazing neuro friend. And this time, Dr. S finally made some headway on his promise from almost a year and a half ago of having cute interns.
Finally.
PS I'm sure I'm forgetting important things, but by now you know better than to expect me to remember much.
PPS This post totally qualifies as a "My Life Sucks But I Rock" post.
PPPS Maybe now that I have some red blood cells, I'll find the energy to write more.
FIRST OFF... A big thanks to everyone who stopped by this weekend for my open studio, part of Philadelphia Open Studio Tour (POST) . My mother and I had a lot of fun meeting and mingling with all of the interesting people - from dear friends, to ex-co-workers-who-are-pursuing-an-MBA-in-Atlanta (holla David Papa! Enjoy your new drawing), to out-of-town strangers. Over the weekend we had about 45 visitors, including quite an unexpected number patrons who purchased little paintings, purple-y collages, big drawings, and my very inexpensive, self-published chapbook; a near complete imbibing of a box of Pinot Evil (my favorite, adorably designed,cheap, yet super drinkable table wine...for goofy and informative links to this vino see below) and 2 bottles of Barefoot Sauvignon Blanc - it's an award-winning cheapie (currently on sale for $5.99 a bottle in PA Liquor Stores, and it's damn good, especially in the summer with sparkling water or plain seltzer).
To my open studio visitors, Thanks for sharing your time and a toast with me. You made my first (POST) experience a successful, inspiring, and exciting one.
Thank You! Thank You! Thank You! Thank You!
FOR MIAs... To those who planned to come, but didn't make it: The brouhaha continued without you, but a tear was shed for your heart-breaking absence.
Brouhaha Etymology
Origin: 1885–90; < class="ital-inline">brou, ha, ha! exclamation used by characters repr. the devil in the 16th-cent. drama; perh. < class="ital-inline">bārūkh habbā (beshēm ădhōnai) “blessed is he who comes (in the name of the Lord)” (Ps. 118:26)
To those who skipped over me because they thought, who's this Melanie Miller chick, and how does she get off calling herself an artist: Satnam.
SAT NAM is the Seed Mantra or Bij Mantra and it is the most widely used in the practice of Kundalini Yoga. Sat means the Truth; Nam means to call upon, name or identify with. Sat Nam means Truth is my identity and I call upon the eternal Truth that resides in all of us. Chanting this mantra awakens the Soul, and more simply means "really". It is pronounced to rhyme with "But Mom!"
MY MONEY, MY CLIMAX, MY CORPSE POSE UPGRADE I don't believe I have or would have ever suspected that I would pair the wors money and climax. But this weekend is worth a crescendo, so....as part of my artful celebration, I treated myself to a new, clearance-priced 8 Piece Bed in a Bag. It was either that or an automatic kitty litter box, but I couldn't find one that was both in my budget and had decent reviews. (Leave a comment if you have litter box recommendations for future retail relish.)
If it weren't for my mother who is gifted with patience, a keen eye for my style, and vision superior to mine, I may have ended up with an over-priced, underwhelming, itchy, crappy, dry clean only ensemble. So add that quadruplebiggie-sized thank you from above to my energizer bunny mom.
MOM: DO NOT READ THE FOLLOWING UNTIL YOU SEE, "MOM, YOU CAN READ THIS" IN LARGE RED LETTERS!!
And Speaking of Mom... Mom's single, lives in Pittsburgh, is obviously one of the best mothers in the world and probably one of the best grandmas too (to my bro's beautiful kids; I'm single and childless). She's a great cook, conversationalist, cleaner of gimp-daughter's apartment and doer of said daughter's laundry, same-day flight booker for myriad ER visits and last-minute hospital stays (all mine; all her expense); and a great catch (i.e., those aren't implants).
Your similar-to-a-dating site profile, or a PDF of your profile if you have one
RECENT pictures (no more than 3 please - and make them good ones)
A copy of your 2008 tax return
Criminal Record Clearance
A short essay on why you think you would be good for my mother
A complete 2-column list of your good qualities and flaws
A list of ex-wives, current wives, and/or ex- or current-live-in girlfriends with contact info
I will pass your information on to my mother. If you don't get a response, bummer - but don't contact us. We'll contact you.
MOM, YOU CAN READ THIS...
BACK TO ME AND MY SPRINKLES ON TOP... (NOTE to the YOUNGINS': The following contains profanity.) I'm still using a bed set from my married days, YIKES!, and its time to get that karma off of my body and out of my space - even if it is a Nicole Miller (no relation - unfortunately). And the rest...to pay for 6 (of many) prescription refills, the two doctors' visits' co-pays I'll have this week, perhaps I'll free the scarf/wrap I put on layaway at Joan Shepp, and then last and unfortunately not least - that ubiquitous four letter word, debt. (If you thought I was going to write fuck or shit, luckily those are two things I'm never charged for - assuming we don't count the TMers bowel-savers: reasonably priced stool softener pills and enemas.)
Take a Chance...or I'll embed Abba videos Here's your chance to share your personal story and be heard by Obama or one of his cronies. I did it. So you know what that means. So should you. I got the down low from the always interesting Fractured Atlas Blog, of which I am both a member and grateful subscriber. Great political/arts blog. Check it out. Join. Subscribe. Whatever you do, I'm sharing today's article/call to action:
Remember that not all health care reform proposals are created equal. Some - such as those designed to expand employer-based coverage - would actually hurt our community more than help it. We can’t afford to give up our voice at this critical time for this critical issue.
After you post your story, you should feel free to share it in the comments below (if it’s not too personal, of course).
PUT THOSE FINGERS OR TYPING AIDS TO WORK I didn't mention the arts, but you don't have to be an artist to write to The Man. Well, with all the healthcare crap and how to make money now thoughts on my plate, I couldn't help myself but reach out to my buddy Obama and share my thoughts in a 2-part letter about the corruption of healthcare (specifically our buddies, Aetna) and the holes in the Cobra subsidy plan - which affect me personally. By the way, if he can write (see pic to right)...so can you. Just sayin'.
Do ya think he'll listen? I even gave him some links to Neuro Detour for further reading. Who do you think is going to click on those in the White House, and I wonder how and if the location of said visitor would show up in Site Meter as "White House". Hah! How cool would that be.
MY LETTER (ROCKS):
Dear President Obama,
I have two personal stories I'd like to share with you.
1. Critical Coverage - DENIALS On September 18, I was diagnosed with Transverse Myelitis, a rare and debilitating neurological disorder. Maximal recovery occurs within the first 3-6 months. Treatment is both limited and imperative. Aetna denied my treatment during this critical time period.
I went from being an active, contributing member to society, to nearly blind, nearly paralyzed, and barely functioning. Thanks to a pro-bono attorney, Jennifer Jaff, we were able to win the case against Aetna in January-their decision overturned after many denials.
I am now receiving IVIg, the treatment that could have made a much bigger impact on my recovery. While I have not gotten much worse, I have not improved. This is due to the lack of treatment during those critical months. This is due to Aetna.
I have included a link to my blog, Neuro Detour, and directly to entries about how Aetna adversely affected my life: http://neurodetour.blogspot.com/search/label/Insurance%3ALove%20It%20Hate%20It
To get the entire Aetna story, please refer to my post, “Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story”: http://neurodetour.blogspot.com/2008/11/why-insurance-companies-are-more.html
2. Issue/Personal Story #2: COBRA The Cobra subsidy is a wonderful idea, but it’s imbalanced. I have been legally separated from my ex-husband for 2 years. We have no contact. Our divorce is scheduled for June. This was a post-nuptial agreement so that I could continue to have benefits, as I was self-employed at the time.
In January 2009 my employers put me on a 90-day unpaid leave of absence (LOA) and in March (30 days short of the LOA) they terminated me, due to my "illness" and its accompanying "disabilities."
Now, although I am eligible for Cobra, I am not eligible for the Cobra subsidy because I am eligible for Cobra through my ex-husband. This stipulation seems random.
I'd like to understand the logic behind this, because the $420+ a month I have to pay out of my disability income is all on me - not my employers, who most likely wrongfully terminated me, and should be partially responsible for my Cobra payments under the context of the new stimulus plan.
What a great plan it is! Too bad, people like me, the 1 in a millions, aren't supported by it.
I urge you to amend this aspect of the Cobra subsidy employer responsibility. Whether I get Cobra through my employer or my ex-husband, it will still cost me at least $400 - money I could be spending on healthy foods, rehab, expensive medications, and basic living expenses, which I can barely cover in my current situation.
If I were to have that subsidy, it could provide me with the necessary income and returns to bring me closer to being a contributing member to our society and workforce - a place where I very much want to be.
Thank you for your time and consideration.
Sincerely, Melanie Miller http://neurodetour.com
Even if noone in power reads or responds to this, I hope one of you do. If you do, feel free to post it here too. We're all "dying" to hear your stories for action and change.
Thanks for reading, and double thanks (in advance) for...(clear throat)...commenting.
Neuro Detour has reached more than 3,000 visitors since I started this blog in October!
I've had other blogs...I still have other blogs, but not one of them has reached the popularity of this one. Being a neuro sicko means having lots of "Who would have thought" thoughts, but, who would have thought that being a neuro sicko would "make you friends and help you influence people"?
Thanks to everyone who reads, reacts, responds. I'm honored to have you has a reader. I'm honored if anything I write makes you take some action or understand this screwed up world we neuro-ites and disabled people live in.
SPEAKING OF UNDERSTANDING...
I have a confession to make.
Not only do I have occasional 'roid rage, I also experience hyperactive stimulus responses - intensified hearing, smelling, body reflexes. You name it, this Transverse Myelitis (TM) girl has it. And sometimes it's OUT OF CONTROL.
Example: The Latest and Greatest Incident Yesterday in CVS, while picking up my meds (I'm a regular) after my last plasmapharesis treatment, I was gimping down Aisle 1 when a suited short man with paralegal (no offense paralegal readers) hair, came sprinting toward me. As he whisked by, I felt the wool of his suit brush against me. The wind of his mad dash nearly knocked me over.
Balance is not a neuro gimps specialty - even an ex-dancer neuro gimp.
Even though the only thing I wanted to do was get home, sink into my couch, take my anti-spasmodic meds, and crash, I stopped, standing my gimpy ground.
So, of course...
I said (not so politely): Excuse me.
And he said, NOTHING.
So, as he grabbed his precious 1 gallon plastic bottle of mad cow-laced milkfrom the cooler, I turned and yelled the obvious: Asshole. (with equal emphasis on both syllables)
In his rush to return to line, he speed-walked past me with a vicious stare as though to say, how dare you yell Asshole in a crowded CVS. Well, his silent aggression pissed me off even more.
And I responded: Didn't you see a woman with a cane standing here?
He spoke!: Didn't you see the box that blocked my vision?
Com'on smarty pants, the box, which was a small "display" was behind me...you couldn't come up with a better, more logical, more "suited" response?
And, I, officially-licensed-cane-carrier (which I couldn't use as a weapon even in a non-post-plasmapharesis state), retorted: I'm glad your life is so much more important than everyone else's.
And he squawked the only appropriate response: Jeeeeezzzzzz.
No sir, Jesus does not help jerks with jobs and social responsibility blindness.
DEAR RESPONSIBLE READERS: THE DAMN MORAL
I hope you see this is as a sort of grown-up-gimp fable.
Although my actions, or rather reactions, may not have been...ummm...the most appropriate, I strongly believe they were warranted. After all, it is my duty as a gimp advocate to teach people about compassion for durable-medical-equipment-bearing-neurologically-impaired-immuno-compromised individuals.
I realized that by saying, "Didn't you see a woman with a cane standing here," I was taking responsibility for my people - my companions in this often-hellish-life we exist in and endure. This was not about ME. It was about the old lady who's unsteady on her feet, the sad jobless person who's lost in a head-lowered dreamworld of job-mourning, but especially gimps like me - glamour or non-glamour alike. Maybe I need to listen to (reading books is still a TM/encephalitis-induced challenge) Dale Carnegie, but... I hereby condone and crown anyone who isn't afraid to yell ASSHOLE, at an asshole running down a narrow aisle in CVS's across the world.
Off you go...
Take control. Take action. Make the world a more compassionate land through malediction. Make people's lives who suck, rock.
Go for it!
PS Please share your tales of curing through cussing here. Thanks!
Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."
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