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.


Worst Gifts for People with Multiple Sclerosis - Gifts Not to Give People with MS | Diigo

Worst Gifts for People with Multiple Sclerosis - Gifts Not to Give People with MS | Diigo

To my Dear Neglected Neuro Detour-ers,

See. I do think of you, even when I’m just out of the hospital for a totally non-neuroite new problem, a blood clot in my fistula, which is much more complex, daunting, and death-defying than I care to get into (other than I could have died because when I asked about this hard painful lump taking over the guts of my fistula, the infusion nurse told me “no big deal" and "not to bother doing anything about it," but a few days passed as it grew to the size of a hacked off-genetically-altered-steroidal-pigeon-belly without its song or audible heart, and the now unfamiliar pain center at the fold of my elbow puffs out its hairless chest again and swallows it’s falsely remembered calming trill of its thrill)  on this cold-sweat-dim-and-gray, no-plans-beyond-docs-and-prods, ass-still-sore=from-radiology’s-4-hour-wait-for-a-1-hour-ultrasound…of-not-the-pain-nor-the-uber-knowledgable-tech-shall-I-complain, back-on-morphine-for-the-fistulatic-pain, therefore-off-the-CRPS-LDN-clincial-trial, 4-days-to-IVIg, 3-weeks-to-Ketamine-in-Hackensack (yes North Jersey - long story; we’ll catch up, I promise), 4-weeks-to-knowing-if-“dangerous” surgery-will-be-required (like you haven’t heard the words surgery and dangerous coupled before!) atypically irksome PMS-ish mis-filed-and-incorrectly-dated-November-Friday.

  1. Breathe
  2. Breathe
  3. Breathe

You will receive a holiday, happy new moments moment, or just for the eff of it gift from someone at some time in the near and distant future.

Bookmark this article (hyper-and-nakedly-linked several times on this page and in the post title) from’s Multiple Sclerosis Portal, and print it out in duplicates; post to your refrigerator, blog, email auto response, Facebook page, Myspace Page, guerilla flyer tactical dissemination on the street, fold it up and place it under driver’s (parked only) wipers (hopefully before they’ve begun their gift shopping), take a picture of it and Instagram it even!

This is one of the first down-to-earth practical should-be-titled Miss Manners for MS and other Chronic Illnesses and Rare Diseases and Disability list of Dos and Donts that’s truly relatable to both the sicko and the sickee (the friend or gift giver to the sicko).

For your ease and reading pleasure, I’ve copied and pasted, without permission, the beginning of the article below. Click on the omnipotent link to get to the juice.

Gimapaliciously yours,


Gifts NOT to Give to People With Multiple Sclerosis
Avoid Gift-Giving Mistakes with These Tips
By Julie Stachowiak, Ph.D., Guide
Updated December 15, 2009 Health's Disease and Condition content is reviewed by the Medical Review Board

Giving a gift seems to get tricky and a little risky after the recipient passes the age of five. People have different tastes and often think they “need” different things than they are getting as gifts. The surge in gift card sales provides concrete data that people much prefer leaving the choice up to the individual who is receiving the gift.

There are some die-hards that still love to give gifts from the heart, gifts they have chosen themselves, based on some insight into their friend or loved one. They think about the person when choosing the gift, they imagine the reaction upon opening the gift – surprise, followed by joy, followed by profound gratitude.

If you are one of these people that loves the act of giving special things to your special people, more power to you. However, if one of your special people happens to have multiple sclerosis (MS), I’d like to offer a few tips to optimize your chances of gift-giving success and avoid tight-lipped glares in place of hugs.


NEWS: Nominate Someone For A Whacky Wego Health Activist Award

From Me to You:

[I've been verbally absent, and at times physically and cognitively... but I'm planning my recovery to include a grand return to my regular posts here on Neuro Detour. For our first time together again, I couldn't help but share this chance to get out of our bodies, bothers, and into gratitude. See, it's not a cop out for composing original material. I stumbled across this today, and thought it was fabulous. And I share Fabulous [sic]. The following is written and posted by WEGO Health.]








Ready to get started? Just choose the award you'd like to nominate someone for - then tell us a bit more about them.

Here is a rundown of the awards. To read more about each award – visit the 2012 WEGO Health Activist Awards page.

Advocating for Another Award – Awarded to someone who raises awareness, speaks out, and advocates for the health condition of someone they love.

Best Ensemble Cast (Non-profit, advocacy group, health organization) – Awarded to a group who radvocates with tireless dedication and wide-reaching impact.

Best in Show: Blog - Awarded to someone who exemplifies the use of blogging to raise awareness and make connections.

Best in Show: Community/Forum - Awarded to someone who exemplifies the use of a community or forum to raise awareness and make connections.

Best in Show: Facebook - Awarded to someone who exemplifies the use of Facebook to raise awareness and make connections.

Best in Show: Twitter - Awarded to someone who exemplifies the use of Twitter to raise awareness and make connections.

Best in Show: Video – Awarded to someone who exemplifies the use of video to raise awareness and make connections.

Best Kept Secret – Awarded to someone in the online health community who is doing great work but hasn't gotten a lot of attention.

Health Activist Hero – Awarded to an inspiring, supportive, and knowledgeable Health Activist who has truly changed people’s lives.

Hilarious Health Activist Award - Awarded to the Health Activist who makes you laugh alongside their advocacy. Nominate your favorite comedian.

Ms/Mr. Congeniality – Awarded to someone who always has a kind word, a positive note, and a virtual hug.

Paperboy Award – Awarded to the Health Activist who always delivers the latest and greatest health news and research.

Rookie of the Year – Awarded to a Health Activist who came on the scene in 2012 but has inspired the entire community.

Silver Stethoscope – Awarded to a healthcare professional who utilizes social media, online community, and technology to make the world a better place.

Trailblazer Award – Awarded to the Health Activist who is ahead of every curve, excited by new technology, and encourages everyone to join them.

Unsung Hero Award – Awarded to the member of your community who is always helping, advising, and sharing – but may not know how amazing and valuable they are.


Want to get involved in the 2012 WEGO Health Activist Awards but not sure who to nominate? Sign up on the awards page, and we'll make sure to keep you in the loop!


Gimp This! intl. & Neuro Detour Links & Neurostorming 05/28/2012

Posted from Diigo. The rest of Gimp This! intl. group favorite links are here.


Gimp This! intl. & Neuro Detour Links & Neurostorming 05/27/2012

Posted from Diigo. The rest of Gimp This! intl. group favorite links are here.


The unfinished thought. The unpublished posts. Speaking and Listening. Is it really 50/50 in brains with neurological disorders?

I haven't completed a post in months. I've accumulated 60+ unfinished posts way past due for publication... but some day.... I have more To Do lists and To Do's done. And more tiny notebooks full of thoughts and ideas and poems and projects and things I will accomplish that will change the world or change my world, or just get me up to speed with the world, or your grandmother. But to be honest, I don't even know which world (or grandma) I'm racing against - or maybe it's that I forgot which world it was, or maybe there are just too damn many worlds to fit into this mind and body... and vice versa.

Since I could write, I wrote lists. I made lists for every thing, occasion, time of day. And I completed those lists. In my early 20s I wrote a 1-, 5-, and 10-year plan of my dream life. And as my dreams changed or progressed I revised the plan, and I accomplished what I set out to do; what I had known I would do since I was a child.

At 36, I'm lucky if I complete the setting and doing of my daily speech therapy project (it's a really good one if you don't beat yourself up for screwing up); three daily goals - simple tasks, like give self copaxone injection; prepare for doctor's appt., etc. - more basic than the lists I made at age six. And I am lucky - reminder to self: I CAN WALK (most of the time - and with durable medical equipment, but I can walk!)
Image representing Evernote as depicted in Cru...
Image via CrunchBase

Today, after my twice weekly speech therapy session, I was a bit inspired, and I logged onto one of my favorite Web sites, After looking up a few words (I thought were knew, but I had merely forgotten), I scrolled down to the quote of the day. Enamored by it, I clicked the little elephant head at the top of my computer screen and saved a screenshot of it to Evernote to add to my list of favorite quotations.

Tagging is a strange thing. I never know when to stop. As my speech therapist said, "I get elaborate." One day, I limited myself to three tags per note, or bookmark. What an internal struggle. As though I was contemplating life and death; but no, alas, to tag or not to tag. Which tags are the answer?

Cover of Publication Manual of the American Ps...
Today amidst my elaborate tagging, combined with the profundity of the Quote of the Day, the word ampersand, it's definition & etymology and probably a few other internalized ingredients, like ritalin and morphine, (that was well controlled 2-tagger!) taken as prescribed a poem spawned - in Arial 10pt between the screenshot above and my literary diligence below- how to cite the quote in the screenshot in every possible and acceptable manner copied and pasted and ready for use.

In order to complete this post and hit that sweet orange Publish button, I'll let my Evernote note speak for itself. Just remember, I'm a rusty poet, and it's just a first draft. It ain't no Montaigne, but it's a start... and for today's goal, a finish.

The neuro brain, at least in my case, does not understand time. I don't experience it, I don't feel it passing, I don't know until my skin tingles and burns and my joints talk - take your meds, I need my meds. I don't know when it's Wednesday or Tuesday, or if that funny thing happened this week or last year. My time is as flat as the bible's Earth. Is there a Flat Timer's Society*[see [*] reference @ bottom. it's giggle worthy], just like the Flat Earther's? If so, sign me up. OR no, take me off the list and mark as spam. I'm working on relearning time. Maybe this is something I should get into when I have more of it.

The logo of the modern Flat Earth SocietyAnd speaking of which, I'm going to publish this as is right now - WITHOUT every link, photo, graph, likeness, or the actual post I planned to post... because my time management still sucks, and I have two adorable nieces waiting for me. They are much more important than spell check, some creative commons pics to spice up the page, or "finishing" this, or any, blog post or daily goal. AT least I can say: I set out, I did, and I adjusted.

However, I will take advantage of Zemanta's generosity, and swiftly add the related reading links to give you the richest experience possible, while making me look really smart and thoughtful. Click, click, click, done. IF you're a blogger and you haven't downloaded Zemanta - do it. It rocks.

Adjusting is one of the key bullet points of the neuro-gimp-sicko life. Yeah, we all make adjustments. I certainly made a lot pre-neuro, pre-gimp, pre-sicko (by definition). I can think of my marriage and divorce. My home life and my 17-year old escape, concrete as disownment and it's etymology -  really, no joke, click the link.

I'm taking ownership of this text in progress, and I'm hoping this is interesting enough for you to look forward to PART II, where I reveal my source, myself in verse (non-rhyming, non-meter, thankyou), and in anal-ity. (I made up that word, use as you desire.)

And, to play with words, as you know I prefer even more than Tonka Trucks™ and Barbie Dolls™: existing or being with a sense or knowledge of time, would in many logical debates result with the winning conclusion that being so means, in short, that one is timeless. Isn't that a nice thought to end with - at least for me.

Timelessly yours,
aka To Be Continued Woman

 When I searched for Flat Timer's Society this was one of the PAGE 1 hits:
  1. any flat chested first timers noticing a growth in chest size ...

    any flat chested first timers noticing a growth in chest size?: I am 7 weeks,with my first baby ... Back to July 2010 Birth Club ...

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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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    See My Art Published in Monkey Puzzle Issue #7

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