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.


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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.
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