Let's Play! Scatterneuries!! - A Playful Site Update

As of today, I am invoking a new Neuro Game Show, Let's Play! Scatterneuries!!, right here on neuro detour, that you, yes YOU, can play whenever you want. Every 1-4 weeks a new Q&A, fill-in-the-cognitive-word-loss, or something of the sort will be posted, and for $1.00* (did you say only $1.00!), you can join the neuro fun.


A WIN-WIN GAME OF CORTEX CAPABILITY
Winners:
If you guess the winning answer, you get your $1 back (minus paypal fees) - if you want it.

Losers:
If you lose, your $1 goes to a good neuro cause, such as research, current fundraisers, and/or my increasing medical bills.


META CONTEST: CALLING ALL GRAPHIC DESIGNERS
Are you, or do you know, a budding or well-admired graphic designer? If so, neuro detour is looking for you!

Design our next Let's Play! Scatterneuries!! logo, and see your design in every post of our ongoing new game series. And while you're at it, if, and only if, you feel like it, feel free to design a neuro detour logo too. (You will NOT be judged harshly if you submit just 1 logo.)

Although we won't pay you (because we can't - we are a 1-woman 3.5 neuro-disorder full-time patient on disability word-horse), karma will. We'll give you credit for it too, and you'll be admired by our 10,000+ readership, your friends, and neuro-ites world-wide. Or, if none of this fame and glory appeals to your generous jpeg spirit, at least you'll have some pro-bono work for your portolio, right?

Definitely worth it.

The Dealio...
DEADLINE: July 21, 2010.
ALL entries will be posted with your name, bio, and the reason why you wanted to create the new (and first) logo for Let's Play! Scatterneuries!! with a link to your Website and/or email. Ditto goes for neuro detour logos.


BACK TO...LET'S GET NEUROUTRAGEOUS!
The Lesions, I Mean, Details
Sometimes you'll have 1 week to get in your answer; sometimes 1 month...but no cheating, psychic interventions, or tom-peeping on the neuro subject in question allowed, or your $ will automatically go to my IVIg (or oxycotin, or klonipin, or ketamine, human albumin, etc., etc., etc.) habit.

Join the neuroutrageous game, Let's Play! Scatterneuries!!, today! (I'm pretty sure it's legal.) Our first installation will be a simple A,B,C Q&A will be (judged unknowlingly, therefore without bias by my very own doctor and...) posted later today.

Keep your good eye out.


*You will be given the opportunity to raise the stakes for the good of neuro-gimps in 19102 or world-wide if you choose to up your ante at your own philanthropical free will (something we neuro-ites don't usually have - "free will" not philanthropy, that is).

Back Home, Big News, Hallucinations & Hot Docs

A big hello to everyone. And a big thank you to those of you who tracked me via my mother's posts on Facebook.

You may be thinking I've abandoned Neuro Detour. I haven't. In fact, I'm ready to expand it's content. (More on this later.)

I haven't written in more than 1 month because I haven't been home for 5 weeks. A few days after my last post, I had my 2nd relapse in 1 month - head to toe pain...as though a semi truck was driving back and forth over my entire body and delirium (although I thought I was perfectly lucid) as well. Note: Don't try this at home.


FIRST...BIG BAD NEWS
On July 28, one day before my birthday and one week after my first relapse, I was officially diagnosed with multiple sclerosis (MS). While I knew that people with transverse myelitis (TM) have a 50% chance of developing this, I assumed if it would happen, it would take years.

At least, I don't have to worry about getting MS anymore.

NOW, BACK TO THE STORY
On Tuesday, August 3, I went to the ER by ambulance, my mother flew in immediately, and I honestly have no clue what happened between then and my first full hospitalized week. I was released Friday, August 21, but with conditions. I had to go back to Pittsburgh with my mother for 2 weeks of R&R.

Initially, the idea of this was more torture than comfort. I had just started seeing someone (yay!) and I was concerned that the extended absence would cause him to think "is this worth it?", "do I really want to date a neuro gimp", "she's hot and all, but there other hot chicks who aren't sick", and the list of self-degrading scenarios goes on.

But my real objection was that this was tangible proof that, at least for that time period, I was considered incapable of caring for myself, i.e., the dreaded burden of dependency.

I wanted to get out of that hospital and return to life as normal; 21/2 weeks of my extended birthday month were already murdered by this relapse.

MEMORIES...
Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 1995.

1995!

I have no idea why this is the year I returned to. My 1995 was as uneventful as any college sophomore. But there I was, staring into the blue eyes of my nurse, neurologist, and infectious disease doc, while my mother sat and watched them taking every effort to keep me from getting a stroke.

All that I recall from 8.3-8.21 is:
3 surgeries
2 days of plasmapharesis
sepsis
a crackhead stroke victim roommate who screamed "waaaaaaaa......ter" over and over again,
inability to stand or walk for a couple of days (hello bedpan!)
get well cards
my favorite roommate, Precious
the uncompromising pain
about 1/3 of my visitors (thank you!)
the preferred moniker switch from TM to MS
my mother flying and driving back and forth from Pittsburgh to Philadelphia
there are now nodules in my lungs (who knows what that means)
AND
the should-have-expected last day of hospitalization yearning to get the hell out of there but you-must-wait-to-be-released-and-receive-your-release-papers 4-hour wait

ON THE ROAD AGAIN...
When the 2-week R&R Pittsburgh sentence ended, I had mixed feelings about leaving. While my mother's stairs are a real bitch for a weak gimp like me, as they became less difficult to maneuver, they were actually a solid measure of my gradual improvement. But aside from a few flights of stairs, I experienced all the good that my hometown had to offer - most of it from the vantage point of my mother's 2nd floor balcony.

In Philly, I have a handful of great friends. In Pittsburgh, I have a history; I made my mark there through my dance company and arts outreach work; my brother, sister-in-law and my joyous nieces live there, as do many friends and relatives, including my resilient grandmother and my BFF/virtual doctor who I've known for my 34 years on this earth.

But Pittsburgh, with its hills and distinct neighborhoods, is not gimp-friendly. Philly is. (Though it should be better.)

So here I am. And here I'll stay, 6 blocks from my doctors and hospital - a distance I can walk on my best days.

Site Update: Neuro Art For Sale

In addition to writing about and advocating for myself and people with neurological disorders, disabilities, and chronic or rare illnesses, I've begun painting my experience. Here's a sampling of what I've been up to.



Please check out Neuro Detour: on paper to see the new works, buy one (or 2 or 3), or tell your friends to do the latter.

Thanks!
Melanie

Site Update: Your Neuro Detour

I've been so lucky to be able to interact with a lot of you individually - via this blog and the emails you've sent. Now, you can interact with each other and share your stories, tips, news, or updates at Your Neuro Detour by clicking interact in the brand new nav bar at the top of this page.

Check it out, join, invite your friends. It's a neuro free for all.

PS More news updates to come on the new nav bar items (hint: neurochic)

Losing Vision, Losing Sight

Over the past few months, I've dealt with an irksome but manageable symptom: blurry vision. Annoying? Yes. Life-altering? No.

During the past two weeks, while I CONTINUE to wait for Aetna's response to our claim for IVIg treatment coverage and while my neurologist was on vacation, I began to lose my vision. On Tuesday, December 30, I awoke to the walls closing over my eyes - extreme blurriness, double vision, and lack of peripheral vision.

While the written word is my medium, since I can't see it, I'm compromising with myself. I'll be posting V-logs until I get the software and technology that I need to be able to communicate in the way I feel most comfortable, and coincidentally, the way I make my living. (shhhh!)

Today was a hectic, non-stop gut-wrenching, physically-emotionally-spiritually drop-you-on-your-ass-life-you-up-then-repeat-the-cycle-all-over-again day. (See, I can't help but write.) I'll let the vids (not my hair in them!) do the talking.

Losing Vision, Losing Sight - Part 1

CLIP 1: A title changed by a corrupt medical system



CLIP 2: It's My Body



Losing Vision, Losing Sight - Part 2
My Life Sucks, But I Rock





I could not occupy another pixel of space in this world today without thanking and acknowledging the following people and organizations for their combined support, advocacy, and services:

Jennifer Jaff, Advocacy for Patients with Chronic Illness, Inc.
Kris McFalls, IG Living
David Goldfield, Associated Services for the Blind and Visually Impaired (ASB)
Temple Institute on Disabilities' Assistive Technology Program
Mom
AM (Aunt Marci)
Dr. Arthur Huppert, Rheumatologist, Drexel University

For technology and assistive resources for the blind and visually impaired, I strongly recommend Temple and ASB (links above). Though locally based, they are national in reach.

Site Update: The first poll is live

Site Update is a new posting series on Neuro Detour.


ABOUT SITE UPDATE POSTS
No politics. No personal ramblings. No philosophical meanderings. Just a simple note or video to say, hey, check out this new feature.

In the current plan in my head, most of these new features will make Neuro Detour more interactive, give you more of a voice, (selfishly) help me get to know you better, or make it more user-friendly. Of course, this takes time and energy - two basic elements of normal living that can be evasive or downright non-existent to a person fighting transverse myelitis, working a full-time job, and/or attempting (a bit of) a social life. (I'm extending this list to all for self-implantation.)

But this is me, and it's 4:12 AM, and I've taken my night meds cocktail (which now includes generous amounts of oxycodone, a sleeping pill, gabropentin, clonipin, cholesterol meds, and a glass (or 2) of wine), I can't see the computer screen (my vision is going now too...more on that soon), and I have a big day tomorrow for which I should be getting some sleep. So basically, expect this to be the first of many (or some...REMINDER TO SELF: a person with TM shouldn't overcommit) site update announcements. (Sidebar: Oops. I got personal. Yet another broken promise...I'm as bad as most doctors.)


FINALLY, THE SITE UPDATE(S)
1. I've added a reader's poll to the right rail of the blog (just under "Subscribe to Neuro Detour). Look for the heading:

"New Poll: What made you interested in checking out Neuro Detour? (select all that apply)

It's a little bit serious, a little bit silly, just like me. So, please humor me or yourself, take the poll, wait for the responses to roll in, and compare them to yours. It's not just about humor; I really want to know about you. So, please be honest.

2. You can now get to Neuro Detour 2 ways:
a. Same old http://neurodetour.blogspot.com, or
b. www.neurodetour.com

That's it for now.