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. sucks, but I still rock.


ALERT! Calling all Humans...who care about their health and others

Hello my sicko and non-sicko friends!

The healthcare update posted below just came to my inbox from Families USA. It provides an opportunity for ALL HUMANS - sickos like me and non-sickos too to state their opinion(s) - no matter how misinformed.

In addition to Families USA, I have a mini-health-update myself: Despite my extraordinary-symptom-of-the-day-semi-blindness, I am struck by the responsibility to share this (also extraordinary sans malaise) opportunity, and type, copy, past, etc. in the metaphorical dark.

Healthcare is NOT just an issue of the sick.
To paraphrase House (famed British comedic actor Hugh Laurie) from the widely top-ten-listed TV show named after its main, ever-so-charming, cantankerous, god-like, hot-to-the-mom-and-grandmom-and-me-demographic doc (pictured right; with whom I feel solidarity ala his own gimpiness and decked out cane, and in the bigger "picture", story-lines by which I identify with as look honey! that's a quantam physics version of me in that myoclonic, neuro-soup, experimental treatment state!):
Whether you're sick or not, we all die.
Nobody dies with dignity, we live with dignity.

HERE & NOW: Sit on your ass. Don't be a lame-ass.
Just a few inches below is your opportunity to make a personal request to the US government as to what kind of dignity you'd like to live with.

Whether you're a rich, selfish f*cker against any healthcare reform; chronic gimp on long-term disability with ever mounting medical bills who wholly supports and pines for the current/forthcoming reforms; or if you're someone waffling somewhere in between and want some tweaking, clarification, or an opportunity to vent...

This may be you're final chance to get on your ass, click whatever links appeal to you, and speak (persuasively) to get what you want for once out of this whacky system. Isn't that worth 5 minutes of your life?

You're far from rare, if you're thinking that there are so many intricacies that it's hard to know what's good for me, my family, my friends, the economy, my pocket book, my tax return, my sore bum from sitting in front of the computer too long reading blogs (hopefully THIS blog), etc., etc.

Sing with me: I say, huh?. You say, heh?. We (all) say, what the fu**?. Kum ba yah, Kum ba yah, you cheesy piece of stale granola.
Don't let your ignorance dissuade you. Yours, mine, or our freakin' government's.

Even I - Melanie Miller, full-time patient, part-time activist and healthcare spokesperson, and, if I may toot my own fistula: internationally quoted sicko* in AP (and not so AP) health news article(s) - must claim such ignorance and step down from my post of all-knowing-neurologically-induced-psychicism, say (to myself - and not in a state of neuro- or sepsis-induced delirium) what the hell, I've looked and sounded like a dumbass before, and state my concerns with earnest, spell- and grammar-checked, concise devotion.
*(to be enlightened, proud, or quell your curiosity and boost my ego, click on prev. link to go straight to article, or browse back posts to see: 6.12.10 post, Melanie Quoted in Assoc. Press (AP) Article on Healthcare!)

Dance with me, won't you dance with me?
I'd love for you to join me on the virtual political interface that enables anyone with access to the Internet to express themselves. If you post your status on Facebook, you might as well post it somewhere that will make a difference.

And I will join you too, even though the mightiest spell-checking tool will do me no good for at least today, since I'll either forget to do it, or the all-encompassing vision impairment that is a common and disabling side effect of many neuro disorders may require a respite from saving the world from itself.

Awwwww, don't yinz, y'all, yous guys feel bad for me and my homies? You better not! We HATE pity.

But we do welcome subtle compassion, offers for trips to the grocery store and/or apartment cleaning, temperature-modulated outings, and boyfriends that don't run when our face blows up like the Stay Puft Marshmallow Man.


SUBJECT: Opportunities to Shape Federal Decision-Making


Last week’s July 1 implementation milestone brought many opportunities for state advocates to help shape the new law. We are fortunate to be working with an Administration that continues to solicit input and feedback. Here’s a rundown of some recent requests for public comment. If you haven’t already, please provide your suggestions to help optimize the new law for consumers.

The Departments of Health and Human Services, Labor, and Treasury released several regulations to implement a new Patients’ Bill of Rights under the Patient Protection and Affordable Care Act. The regulations will prohibit discrimination based on pre-existing conditions for children; ban lifetime limits on coverage, as well as place restrictions on annual limits; forbid unfair rescissions of coverage; restrict cost-sharing for emergency services; and put into place many other patient protections.

Comments are due by August 27, 2010 and the rules go into effect September 23, 2010. You can either comment directly to HHS or share your comments and concerns with Families USA by emailing us at

And, if you have not already commented on previously released regulations, you still have time! The interim final rules on dependent coverage and grandfathered plans are still open for comment until August 11 and August 16, respectively. Information on all the rules can be found here. Families USA has compiled our comments on dependent coverage, and we’ll be posting our comments on other regulations to our website as we complete them.

On July 1, the Administration also launched the web portal,, to help consumers navigate their coverage options and understand their rights under the new law. As you navigate the site, you’ll see many yellow comment boxes to submit your suggestions. While is already a tremendous clearinghouse for information, please provide any insights you might have to make the site even stronger. Families USA is also compiling comments on the web portal for the Administration. Please send us your thoughts at

To stay up-to-the-minute on health reform implementation, please also sign up for email updates at and Thanks, as always, for your continued hard work. We’re glad to be working hand-in-hand with you to make the most of the new law!


Jessica Larochelle
Field Director
Families USA

Families USA | 1201 New York Ave., NW, Suite 1100, Washington, DC 20005 |


To those that are getting on their asses to get off their asses, I extend my gratitude. For everyone else, maybe you can garner some appreciation next go. Regardless, feel free to POST copies of your messages as a comment, or copies of your brain waves that induced your inactivity.

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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


In Pictures

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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