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.


Obama Considers Extending COBRA Subsidy...and Other Mel/Health Care Ramblings

For those of us that became sickos, were then fired from our jobs for "incompetence due to your illness" or simply laid off (perhaps you were the first target too), are now living off of Disability, and spending some of that on COBRA (thanks to the subsidy), barely getting by with multitudinous doctor and medicine copays, dreading the day the subsidy ends, and scared, strained, and stressed for the impending, unavoidable date that COBRA ends and the months or years that rest in between COBRA and Social Security Disability Insurance (SSDI) this article from Workforce Management.

According to the article Obama Considers Extending COBRA Subsidy, "The administration is considering whether to seek an extension of a federal law that subsidizes COBRA health insurance premiums for workers who are involuntarily laid off." To read the entire article click on the title of this post.

Let's gather forces, get informed, and make this happen - not just in our lifetime, but in the now-time.

Healthcare costs for individuals are rising dramatically.

Premiums for employer-provided schemes have risen four times faster than wages, and are now double their cost nine years ago.

The percentage of employees with an annual deductible greater than $1,000 increased from 1% to 18% between 2000 and 2008.

As a nation, the US spent some $2.2tn (£1.34tn) on healthcare in 2007. That amounts to 16.2% of GDP, nearly twice the average of other OECD countries"


I am.

I'm scared shitless (shitless is also a side effect of Transverse Myelitis (TM) & Multiple Sclerosis (MS), as well as many other neuro, autoimmune, and chronic illnesses, and/or it can be caused by or exacerbated by the meds we take) for the day I lose my health benefits.

What insurance company will insure a sick perso n? And at what cost?
(linked is an informative article from the NY Times.)

Click Obama for his thoughts on the progress of the health care reform bill.

If you're sick, best option: DIE.

Years ago, after I was hit by a car and I tried to get health insurance, I was turned down over and over again. I wasn't even given the opportunity to pay exorbitant fees, which, as a young professional dancer (i.e., gives new meaning to the phrase "limited income") busting my ass teaching, waitressing, performing, and going to coll ege, I wouldn't have been able to afford anyway.

This is why we have to take action, speak up, sign petitions, write letters, inform friends, family, and neighbors of the importance of health insurance for all. This is why we should all look to the organization, Health Care for America Now (HCAN), and join them in lobbying for universal health care.

Take action with easy links on their Web site.
Become a fan on Facebook, then invite your friends to become fans too.

HCAN isn't just for people with chronic illnesses, but since this is a site dedicated to that topic, here's what they have to say about it:

People with chronic diseases

HCAN is advocating for reforms that will require all insurers to provide standard, comprehensive health care benefits that meet your needs from preventive to chronic care management services. The plan will have low out-of-pocket costs (like co-pays) so you can afford to get the medical care you ne

ed at any time. The public health insurance op

tion will allow patients to choose their doctor and hospital. Additionally, insurance companies will be required to cover pre-existing conditions so everyone regardless of health status or history can get comprehensive benefits at fair and stable premiums.

Socialized medicine - universal health care - is an absolute must have.
"It's [universal health care] long overdue. There has to be some sort of centralized universal health care available to every citizen in this country. Canada does it and it works," says Iya Garrett, R.N. (and one of my nurses).

Whether you're sick today, tomorrow, or in your (hopefully) golden years, access to affordable health care is a human right, but in our country it's a privilege. Anyone without insurance is a victim of a selfish society.

We even have a president that supports this. (Note: Video link)
And a cell phone company.
And believe it or not, Walmart.

How many of you are victims today? How many of you have ever been victims of our live-to-work-to-get-health-insurance society?

I abhor being a victim, especially to multi-billion-dollar corporations. And I refuse to allow its gated castle nether-world to rule over my health, lack there of, or death. I'm definitely no know-it-all, but I've been a victim of the corruption pandemic that plagues people with rare diseases, or just plain-old healthy insurance carriers.

Help me. Help me find new ways to guarantee that within this year or next, there isn't one person with the basic human right of access to health care.

Yeah, Obama's doing a great job pushing and pushing and pushing his (and my) healthcare reform agenda. But, lawmakers are still divided whether there should be a new government-run insurance scheme.

Socialism? Oh, my! You mean we have to split human rights evenly? Won't that ruin my capitalist agenda? Social responsibility? What the f**k does that have to do with my landscape-groomed-3000+ square foot home-lifestyle?
says the capitalist, suburban, wealthy republican (sans republican Senator Olympia Snowe).

Note: above super duper unnecessarily long link will take you to a video.

According to Paul Adams,
a BBC News Correspondent based in Washingt

"on the long, tortuous road towards reform of America's healthcare system, this was a decisive moment. Several members of the Senate Finance Committee called the vote historic. The Washington Post this morning reported that not since Theodore Roosevelt proposed universal healthcare in 1912 has any such bill come this far. After months of debate, the committee's chairman, Max Baucus, looked delighted and relieved.

In the end, those in favour of the bill won comfortably. This was due in part to a Democratic majority, but also to the support of Senator Olympia Snowe, who became the first Republican to back any of the bills proposed this year.

But this is not the end of the process. There are many more legislative hurdles to overcome before it becomes law. In the meantime, debate will continue to rage."

Let's channel our rage to win the debate. What do you think?

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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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