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.


Slow Poke(d). Bur(de)ned?

(Author's Note: I've saved the silver lining for another post.)

Every day, I think about this blog. I want to write. I want to write to you. I feel a responsibility.

I miss you.

I've placed expectations on myself to keep you informed, to write through my own experience regularly so that I can:
  • remember my life
  • experience catharsis through writing, or sharing
  • connect to people like me
  • keep my concerned friends and family informed of my progress (or lack thereof)
  • be a voice for people like us
  • educate people who are not like us
  • change the world (through a naive, how vague, how self-aggrandized!)
I have been silent, communicating mainly with my nurses and doctors by day, laid up on my couch by evening into night into morning, watching formulaic TV shows (that I used to scoff) because my brain refuses to comprehend anything of complexity or international importance.

I have been feeling sorry for myself, and it's really pissing me off, but I can't stop. It's like sugar - one indulgent three-layer chocolate cake after-dinner dessert becomes a gateway drug to night-time chocolate bars and afternoon oatmeal cookies. At least there's some fiber there. (If you have TM or on the drugs I take, you'll understand the reference. If you're not, I'll just spell it out: constipation.)


The neuropathic pain* has been intense.
Touch hurts.
My breasts are numb.
I don't feel the pain of the access piercing my portacath.
I'm too embarrassed at my whining to go on.

How crazy is it to yearn for pain?!
(NOTE: No offense or correlation meant to S&M aficionados)

As my feeling body hides more of itself from me, I still feel the fire of neuropathy, the ache of a hand caressing my shoulder, the ghosts of The Drake pounding my spine. And I become complacent, lazy, angry.

I am blurry eyed and brained.
I am out of work.
I am lucky; living on disability income.
I am society's definition of a burden.

Within the arrhythmic dullness and blur - dimming pigments, vision's deception, body's rebellion - I still have the Mel-spirit: story lines, entrepreneurial adventures, artistic visions, social & political concerns, compassion, conviction, and passion.

In my Transverse Myelitis (TM), autoimmune-inspired state, fatigue and confusion are winning. And I am becoming a little-skinny-water-logged-loser, limping behind myself - slower and more imbalanced than the real cane-sporting, glamour-seeking, stumbling and recovering me.

It's difficult to accept a refined definition of "mover and shaker" - myoclonus in body and voice, tremors in hands and fingers, spastic bladder, IVIg delerium reactions, 110 lbs of a body teleported to Jupiter, ideas that prefer to play "hide and don't seek" rather than mindful actualization, an activist in hiding, a recycler dumped like generic waste into a generic garbage can.

Perhaps today's rain has melted the sweetness of my appetite to think and do and act - to smile at adversity and eat it for dinner.

Maybe the culprit is:
  • the increased frequency of my home-bound IVIg infusions from 5 days monthly to 5 days biweekly
  • the conflicting fear/hope/relief of starting azathioprine on Monday, a new and potentially nasty immuno-suppresive regimen to treat my recently confirmed autoimmune disease
  • last week's bloody urine - a UTI that blossomed in silence because of my body's blindness to the burn
  • vision with a moody mind of its own

Receiving IVIg at Home. Photo Credit: Mom
Or maybe, I'm just a girl with 7 months of TM under her skin.


I am a mutt: part rebel, part bourgeoisie. I want to control my rebellion - physical and mental. But no. I have to give the reigns to a body without a cause, pills, infusions, and doctors. I must concede. I could build an army, and I have, but the truth is, when you are sick, you are always alone.

Dear Optimism, Hope, Belief, Faith, and Perseverance,

Where are you, my dear friends, today? I miss your energy, your ovation-deserving performance. Obama is talking you up on CNN. Are you tired like me? Have I impoverished you, weakened you with tendinitis from over-use?
Inflamed tendons are painful and slow-healing, but they recover with rest.

Forgive me. I'm feeling selfish - restless by the requisite, the force, the enforced tariff-will of rest-reduce-relax-retreat-repeat, an identity under constant revision; please work through your strain. I need you. My cats need you. My mother needs you. Everyone I know needs you. I promise to be more considerate of your needs and appreciative of your philanthropy.
Admitting that I need is terribly humbling. But you know that as much, if not more, than my apartment's carpet.

We all need sleep (and a good vacuuming). We have broken pieces that find their whole with closed eyes.

Why do I feel guilty when I close my eyes?

Why do I feel guilty for being sick?


PS. Please tell Obama that the peoples' question of marijuana legalization is legitimate - although perhaps misguided in purpose. Forget about economics for a moment, and consider marijuana's medical benefits. I know I am, hand-in-hand with Canada, New Jersey...


*Neuropathic pain is a common and increasingly prevalent form of pain that is thought to involve an alteration in nervous system function or a reorganization of nervous system structure. It can be associated with nerve damage caused by trauma, diseases such as diabetes, shingles, irritable bowel syndrome, late-stage cancer or the toxic effects of chemotherapy. In many patients, damage to sensory nerves is accompanied by varying degrees of pain. The experience can range from mildly increased sensitivity to touch or temperature to excruciating pain. This kind of pain is extremely difficult to manage clinically because it fails to respond to most medications currently used to treat other forms of pain. According to Pharmaprojects, a healthcare publication, each year approximately 26 million people worldwide suffer from some form of neuropathic pain. (


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


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.


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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