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.


Calling all Sickos and Non-Sickos: Tell Obama How Insurance in America Sucks/ Fractured Atlas Rocks

Whether you've been critically ill, or just had a minor cold, you've probably had an issue at one time or another with your health insurance, or lack there of.

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:

Tell Obama About the Arts and Health Care

The Obama administration is looking for personal stories about the need for health care reform. This is a great opportunity to ensure that the arts community isn’t left out of this debate.

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).

I didn't mention the arts, but you don't have to be an artist to write to The M
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) 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.


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:

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”:

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.

Melanie Miller

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.


And more versions for your viewing pleasure:
Take A Chance On Me
Take A Chance On Me (spoof?)
Take A Chance On Me - no embedding allowed (probably original vid)

1 comment:

  1. whether it's health care or ABBA, your beautiful geekness shines and shines


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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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