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.


March 8th — 14th is National Patient Safety Awareness Week!

I received an email today with patient safety tips from I.G. Living, the organization that was integral in my fight against Aetna for coverage of my IVIg treatment and has continued to follow my progress on (AFTER NOTE 3.10.09: From Mom, Self-Titled "Editor At Large"...Remove "on". I'm leaving it, just to show how my cognition depletes as I get further away from my IVIg treatments. Thank goodness I start up again tomorrow!) personally. So, in addition to their tips (at the end of this post), I'm sharing some of my own.

  1. If your instincts are different than your doctor's orders, seek a 2nd opinion...or get a new doctor.
  2. CALL your doctor if something doesn't feel right, or if you're feeling worse. DON'T wait. Even if it's the weekend. That's what residents are for. Never feel like you're "bothering" your doctors, nurses, or support network. They'll get over it, you're body may not. THEN, call your mother or sister or someone else you can cry to, bitch at, or just let them know, hey, I'm not feelin' too hot.
  3. Be proactive. It's your body. It's your health. Don't be afraid to stand up for yourself and what you want. Bark if you need to.
  4. Get educated. Join national organizations for your disease and local in-person or online support networks. Meet other patients online or in person. No joke. It makes a HUGE difference.
  5. If you have short-term memory like me, carry a voice-recorder or palm pilot (they also have portable keyboards) to keep a record of anything pertinent to your health or general life.
  6. If you don't have someone to accompany you on your doctor visits, record them (See #7). Most doctor's won't mind. If they mind, see #1. PS If you're mother is accompanying you, record anyway. She'll always hear what she wants to hear. (Love you, mom!)
  7. Use a daily, 7-day pill organizer (mine has morning, afternoon, evening, and bedtime).
  8. If you live in a high-rise, let management &/or front desk personnel know if you are disabled, a heavy sleeper, or just too damn weak to make it down the fire escape. They usually have lists for fire drills or emergencies. Let your neighbors know too. Pray that it's the hot fireman or neighbor that comes to the rescue.
  9. If you feel someone is harassing you because you are disabled or sick, don't hold yourself back from telling them, f*ck off.
  10. Buy art. It will make you happier, therefore healthier :)


As patients, we're as unique as, dare I say it - people. Oh my! We are people too. (Note: sarcasm). We all have different safety issues.

Please share your tips - in words or video - on the Neuro Detour Interactive page. Look for my 3/10 post: "March 8th — 14th is National Patient Safety Awareness Week! Please share your tips. Thanks, Mel" and hit reply.


March 8th — 14th is National Patient Safety Awareness Week!

Dear IG Living Subscribers,

A key part of our mission is to provide you in the IG community with information, resources and tools that will positively impact your quality of life. March 8th through 14th is National Patient Safety Awareness Week, and in recognition, we’d like to provide you with a patient safety checklist (some of the suggestions appeared in the February-March issue). Feel free to print it out and refer to it whenever necessary.

Communicating with healthcare providers

  • Ask your hospital or healthcare professional about patient safety, and how communication and partnership between you and your providers can be improved.
  • Request the pedigree of your pharmaceutical product from your healthcare provider.
  • Be sure you know the brand name of your IG, as well as what it looks like (bottle, shape, color, size).
  • Talk with your healthcare providers about where they buy their drugs, and ask if they follow "own use" policy.
  • Ask your pharmacist if the pharmacy has a policy of not dealing in the secondary wholesale market.
  • If you receive infusions at a clinic, verify that the doctor is board-certified.
  • Call your doctor if you experience new or different side effects from those you’ve had previously or that are disclosed on the drug’s packaging.
  • If a drug is either not effective or stops being effective, return it to the pharmacy.
  • Examine your product’s packaging: Is it clean and sealed? Look closely at the preciseness of the labeling.

Protecting yourself

  • Rid your medicine cabinets of old or expired medications.
  • Obtain copies of all your healthcare records, and keep them in a safe place.
  • Write down all of your prescription and over-the-counter medications (including doses), as well as any allergies, and carry the list with you.
  • Write down and carry with you the names and numbers of all of your healthcare providers and pharmacies.
  • Talk with your family or other close individuals about what your preferences are for your healthcare, in case you are unable to speak for yourself.
  • Let your healthcare providers know who they should talk with in case you become unable to speak for yourself.

At IG Living, our goal is to empower you to take more control of the decisions impacting your healthcare. Please let us know if this checklist is helpful — we’d love to hear from you!

Thank you,

Ronale Tucker Rhodes, Editor


  1. Hi Melanie:

    I tried to email it got bounced back, I hope you
    are well. You won on the Bright Side Project Candace Ang. We usually only wait a week, I am hoping you read this and contact:) I need to know which design you would like and your mailing address. Please email me:


    Miss B.


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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.


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