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.


Do Something Important Tomorrow for More Than Just My Grandma's Birthday

This just in from 

Let's celebrate Grandma Estelle's 83rd birthday (she'll kill me if she knows I announced her real(ish???) age), seniors everywhere, and the chronically ill, or even momentarily sick people by picking up your phone for a few minutes or more.

I'll be at the PUP office or working it from home - depending upon my "status" tomorrow (which includes afternoon perma- and portacath care from one of my favorite visiting home nurses)

Leave a comment if you'd like to join me, or if you're a loner activist, tell us that you'll be taking action solo.

The more who do, the more who will be inspired to do too. (Sounds like it should be a fortune cookie proverb.... - in bed.)


Here are the details:

We Are At A Critical Point for Health Care Reform!

There is no time to waste in the next couple of weeks. We have to keep fighting and let our Members of Congress know we expect nothing less from them.

Many of us are frustrated after the MA election, but we have to remember 98% of folks there have insurance due to their state reforms. The rest of us are still struggling as much today as we were before the election! Two people in PA are still dying every day as they wait around for access to quality, affordable health care.

Help us make a real difference during the National Day of Action on Monday, January 25th. We will be generating hundreds of calls into Congressional offices. Please come out to help, we will be taking action all day, from 9 AM - 9 PM at the PUP office, 112 N. Broad, 11th Floor.

Stop in for an hour or two after work, or during lunch, or any time during the day!

This type of action is Extremely effective, but it only works as a team effort with everyone stoping by at some point throughout the day.

Can't make it to Philly for the Phonebank?

You can call from home! Ask Athena for more information: or 267-257-6968

Or You can jump on a conference call and we'll set it up for you to call from home!

Conference calls are at 12 Noon, 3:00 PM, 4:30 PM, 6:00 PM and 7:00 PM

The call in number for that call is 712-451-6000 Passcode is 275893#

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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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