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.


IVIg Activism: An AWESOME IVIg Campagin Video & YOUR TURN to Speak Out

Michelle Vogel
Michelle Vogel

This just in from Michelle Vogel of the he Alliance for Plasma Therapies:
On February 10th, the Alliance for Plasma Therapies and the MS Society are introducing legislation in CA to stop the practice of tier IV plans/specialty tiers/coinsurance in private insurance plans in the State of California. We are going to be holding a press conference in San Francisco and ABC News wants to interview a patient who has been forced to pay coinsurance (instead of a flat copay per infusion a percentage of the cost of their IVIG). Please let me know if this has happened to you and if you are willing to share your story. You can email me [Michelle] at
While this initiative is currently for California, and this call for patients is specific to Northern California Patients, I hope we can get the Alliance, our local MS Society branches, and maybe even my friends at I.G. Living and Families USA to not only advocate politically on a regional level, but to continue this specific political and community awareness campaign throughout the US and beyond.
I must admit first, I've been out of the activist loop as I've been recovering from a triple exacerbation that landed me in a respectable Western PA hospital (that DID NOT KNOW WHAT! to do with me) while visiting family and hasn't given my portacath a break since. (This is my third week straight attached to an IV pole and the third treatment type of infusion therapy.) So I do not know if or what compatible campaigns are happening in Pennsylvania, or any other state (other than Cali) for that matter. Yes. I am an ignorant blogger. Tsssk, tsssk. Shame, shame. 

Since when have I cared about the judgments of dissenters or righty tighties????, unless they are my mother or brother, of course.
But weak, delusional, flared, or on fire, I'll never stop bull-horning about Aetna's corruption and its life-threatening effects. This is an issue that affected me so profoundly adversely, thanks to Aetna (you can find many a post about them and my experience), that it's hard to know how much healthier I might be today if it weren't for their capitalist, self-serving policies.  
As may have heard this from me, or read about this in a new book on the subject (neuro moment... title, eek), I had to lose my vision, after losing multiple appeals for IVIg coverage during most crucial 3 months of my recovery from Transverse Myelitis, despite the help of THE amazing pro-bono attorney, Jennifer Jaff, the brilliant visionary behind Alliance for Patients with Chronic Illness.  
I should be grateful that I didn't have to repeat the battle with my current insurance company, however I too must pay coinsurance on my infusions - and even without TM or MS exacerbation or an RSD (aka CRPS) flare-up, I survive off the fruits of many many infusions and plasma therapies.

And this is something I still can't understand... 
Why is being sick so expensive, often even more, sooooo much more money than the limited income SSDI and/or Long Term Disability provides us certified gimps to live? And even more offensive, SSDI makes us wait 2 years before receiving Medicare. 
But that's another action to be redressed again, don't worry.
If you're not inspired yet by all of these impassioned people and non profits, you will be. Watch this video.  

So, pretty amazing, right? Well, what are you willing to do about it?
Let's start with a conversation. In lieu of get well flowers, I'm humbly asking you to:
Help this to be the most active comment section of any Neuro Detour post to date. 
Any ideas on how we can spread this campaign into our cities and states? The forum is yours, ours now. Let's share our ideas. Let's work collectively. Let's share our successes and failures. Whether you're a full-time sicko individual like me, or a part-time IV dabbler, your ideas and your voices are crucial. They are the first step. 

Come on now. Edjumacate me. Please?

Let's (me) set a goal*: 10 comments with 10 comments on those comments. 
Meet this goal, and maybe I'll even give you a prize!
*This may be subject to change at any time for any reason by the author, or the author's mind-controlling medications.

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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