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.

MEL'S TOP 10 PATIENT SAFETY TIPS...FOR THE MOMENT

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 :)
    

SHARE YOUR TIPS

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.



I.G. LIVING PATIENT SAFETY E-NEWSLETTER TIPS...

March 8^th — 14^th 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 8^th through 14^th 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
editor@igliving.com

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

I've Lost My Vagina

I haven't posted signs yet, and DON'T WORRY (mom), they will not have pictures of the missing treasure, but yes, I've lost my vagina.

I've looked in all the obvious (and not so obvious places), and I can't find the evasive bugger.



THE SEARCH FOR THE MISSING VAGINA

If you're stumbling across this blog because you, yourself, were searching for vaginas, you might be a little bit confused. How can a 33-year-old woman, with a vagina that has a (known?) history of staying in place, as most vaginas do, lose her vagina?

The answer, my friend, is unfortunately quite simple (and yet so deeply complex), I believe my vagina is somewhere blowing in the wind.

Wait. No. That's not the answer...

1. My vagina has been the victim of identity theft.
2. My vagina has gone to LA to be a contestant on that Marry a Millionaire show.
3. My vagina is on the FBI's top 10 Most Wanted list.
4. My vagina is in high demand, sucka'.
5. My vagina got sick of my lazy couch potato ass and is at the attorney's office filing for divorce.
6. My vagina was tired of being nagged, nagged, nagged, and has left me to explore the big, wide world that exists outside my panties, got hit by a car while crossing the street, lost its memory, wasn't carrying ID, and is lying in some hospital bed on life support all alone with no one to hold its hand while it takes its last dying breaths.
7. It's winter! My vagina's in hibernation, duh.
8. My vagina is getting in touch with its inner child and playing hide and go seek.
9. Maybe I should call my mother. She's sure to know where my vagina is. After all, she knows e-v-e-r-y-t-h-i-n-g.
10. My vagina just doesn't like me any more. So deal with it.

The truth is, I can see my vagina. It's exactly where it's always been. I just can't feel it.



OH VAGINA, WHERE ART THOU

One of the first questions my neurologist asked me after diagnosing me with Transverse Myelitis (TM) was how's the sex? He didn't quite say that verbatim, but the question and point were close (don't forget, I do have TM-induced short-term memory), I assure you.

At the time, partner-less as I was (though not alone... "clear throat"), I thought everything was A-OK with my little friend. But as the disorder progressed, and so did its side effects, my vagina, just as I have, has become a victim of neuro mayhem. What's so screwed (pun intended) up to me, is that I'm calling my vagina my vagina. It should just be .



THE STORY OF THE LOST VAGINA

It's really about math. On a good day I have 1/2 a vagina; a bad day 1/16; a this f*cking sucks day, nada to the naked eye.

I hated fractions in school, but luckily I was good at them, because we nether-region-losers need to know our fractions and their potential for multiplication like the back of our hand (another pun intended).

This lost vagina is my land, this lost vagina is your land...
I had an illuminating conversation yesterday with a girlfriend (with whom I always have illuminating, enlightening, energy-enhancing conversations) who is going through menopause. We realized that our 10-year friendship has brought us yet another gift of girl-to(not on!)-girl empathy.

The neuro vagina is very similar in its affects and effects as the menopausal vagina, and that got me thinking. My missing vagina is not alone out there. We 1-in-1-million TM'ers and our corresponding sex organs aren't nearly as detached from the world as we thought.

I don't know the statistics or all the populations affected, but those with lost vaginas (or penises) could also include people with spinal chord injuries, neurological disorders, disabilities, menopausal women, victims of female circumcision, or victims of abuse. Please tell me if I've left anyone out, because I sincerely do not want to offend anyone.

Even though, I know I am not alone in my search for the missing vagina, I STILL WANT MY VAGINA BACK!



OCCUPATIONAL THERAPY (O.T.) FOR THE FRACTIONAL VAGINA and GUYS, I MIGHT BE ON YOUR SIDE

I may have said it before, and I'll say it again - because I need to say it to myself now, again... again...and again: O.T. There ain't nothin' like it:

• Kegels, kegels, kegels, kegels...even if I can't feel that muscle that (as an ex-dancer) I had such control over, these are an absolute imperative. OK, they're not that fun to do (on your own), but a) there are many benefits to kegels (think latter-life incontinence ladies - trust me, it ain't fun now or ever), and b) use your imagination, do I have to spell everything out. My mom's gonna kill me!
  
• Masturbation...even if it takes 20 minutes instead of 3 and there's no "end result". (Life is about the process, not the end result, right?).
• Sex. And this is doctor's orders (not Dr. Mel, Dr. Neurologist)! So, in the brilliant words of Nike, Just do it. And, as a former personal trainer and professional athlete, I can assure you, multiple reps and sets are your key to success.
  

Since hanging missing vagina signs and offering a reward will only deplete what energy and money I have left, as far as finding my lost vagina, there's not much more I can do at this point than the three bullets above. I could hire a private eye (come on...make the hackneyed leap here with me), but that's just plain old ridiculous.


Ohhhhhh, oh, oh...the FRUSTRATION
And, here's how the neuro woman can now relate (perhaps fractionally) to the general male population, who:

a) think of &/or refer to their penis as their penis (i.e., an object with a life of its own)
b) get sexually frustrated and feel like women just don't understand the needs of their penis or understand how we were put on this earth to make their penis's life a happier, healthier, less blue one
c) really want that space between our legs to experience the most it can in life
d) are moderately-severely obsessed with obtaining The Big O



THE NEW SOCIALIST AGENDA: WE ARE ALL LOST VAGINAS

Maybe I'm just trying to make myself feel better - since certain past times are missing the end-mark. But I do feel some consolation in knowing that I am not Hans Solo in my search for my missing vagina or the experience of having a black hole where there should be a pretty pink purr.

The search for a missing vagina doesn't have to be a nail-biting, cops and robbers, covert operation thriller. It is a process. It does need to be acknowledged, addressed, and dealt with, but at least, at the end, I will not have been chased, shot and killed, or arrested - though I may be out of breath.

We've all lost things that are important to us. And, we either find them or we don't. But we look until we know there's no more point in looking.


Yes We Can, or:
I believe I will find my vagina...some day.
The reason I have that hope is because I have a very special neurologist who won't stop working on my behalf until I'm as healthy as I can be. And that means a full-bodied-all-parts-in-as-working-order-as-medically-and-magically-possible-woman. I also have me, and friends, and "partners-in-crime", and in many ways, their support is better than any full-force-search team.

As always, the back, back, back story is as twisted as our nervous system and has a list of characters including advocates (I.G. Living, Advocacy for Patients, my mother, "special" friends, and more; Side Note: I can't believe I just positioned my mother and "special" friends in that serial order, but say lah veeeeeeeeeeee), enemies (Aetna - they don't even deserve a hyperlink), and the sacrosanct IVIg.

For the mean time, I'm going to do my best to enjoy the journey of the case of the missing vagina. But that shouldn't be that hard... (Another pun intended)

Tapped and Plugged

TAPPED
I had my 2nd my spinal tap yesterday, and aside from the obvious excruciating pain that follows a doctor sticking a huge needle into your spinal column, navigating nerve to bone and sucking out precious fluid, it appears that that tap also taps into so many of the questions we Transverse Myelitis-ers and similar disorder-ers face.

At least it has for me...like a surprise knock at my door.

From my history as a dancer/choreographer, I have lived by the Body Mind Connection, or Body-Mind Centering (BMC), and I've experienced the profound links that exist within the labyrinthine corridors of our mind and body. When one has a neuro disorder, like Transverse Myelitis (TM), those corridors become a DO NOT ENTER construction zone, off limits even to the body's owner (i.e., me in my body, you in your body).

But when the doctors comes a tappin' and the all-smiles anesthesiologist comes to take you into a much-loved and deserved outer-body experience (I have to be put under for spinal taps and MRIs because of severe myoclonus - imagine a needle going into your spinal column and a major body spasm meeting paths: hello paralysis!), some of those corridors are cleared, and questions and emotions come a flowin'.


Knock Knock
We rare-disease-chronic-illness-neuro-autoimmune-limbo-livers already have a plethora of questions and emotions to answer, ignore, actualize, embrace, rail at our doctors, or toss out the window of our 18th floor apartment (might I be projecting a bit?).

But something happened yesterday - in my body and in my mind - that clarified one important issue.

I'm screwed. My life is changed forever. So...


What can I do? Who can I be?
Luckily, my ever-supporting mother flew from Pittsburgh to be with me this weekend, so I've had a constant companion to bounce these questions off of, and for a mother, she's been amazingly non-judgmental (aside from the occasionally obligatory mom-nag here and there) and quite resourceful. The questions are: am I me as I am now?, as I was then?, am I me as I was based on then?, or am I a new me based on not knowing any of these Me's?.

For a 33-year-old, I've had many lives, including multiple careers, tragedies, hobbies, educational endeavors, travels, homes, countries. If I just explored the last 5 years, I couldn't contain the list to 10 fingers:
At 28, I married my composer in a beautiful outdoor-October Buddhist ceremony composed of water ceremonies, close family and friends, and three bald heads (my uncle's from chemo, mine in support of his chemo, and the Buddhist monk). I was touring the country with my dance company and the world with his work. At 29, I retired from dancing due to unrelenting hip and knee problems, while moving myself and my nonprofit dance company to Philadelphia, becoming dual-city (not recommended), to follow my husband (also not recommended) who landed a great job in the great city of brotherly love (which I really do love).

That year, I bought my first house (in my name!), began pursuing my MFA, and spent as much time on the road and in Pittsburgh as I did in Philly, caring for my dance company and my uncle/father-figure/friend, Kevin Wander, as he died of a brain tumor. The latter event series was a complete de ja vu of my life-altering 18-year-old experience: replace MFA with undergrad, uncle with father, and husband with boyfriend (both of same name, same spelling.)

Just after my 31st birthday, I was diagnosed with Chronic Kidney Disease (CKD), became separated from my husband in the same week, saw a career counselor, started a freelance writing and consulting business called CoolMelanie.com (the URL was available...and I have no qualms calling myself or what I choose to do with my life cool, so there), was accused of being a prostitute (not by the law but by my soon-to-be-ex-husband) among other things, and finally saved enough money to move out of my house.

By 32, I had my first full-time employee with benefits position EVER as a full-time senior copywriter with an interactive advertising agency, and although it took some time getting used to being the employee and NOT the boss OR a world-traveling artist, I loved it.

I've presented about 1/100th of my good, bad, and evil experiences within 1/2 a decade. I feel like I should apologize right now.


So you'd think reinventing, or redefining, the self would come naturally?.!?
It doesn't - even when you're a life-change-embracer.

Sometimes it creeps its way into your existence or it happens overnight. Sometimes it's forced on you like divorce papers. Sometimes you choose change happily, reluctantly, or by some outside force that can't be resisted (like love, your mother, or prison).

What do you do when your life careers are based on a more-than-competent mind and body? And in this society, we are our career, and as an artist, I may be biased, but I believe this is more true with the arts than any other career.

And what do you do in an economy that doesn't have room for fully-abled employees, let alone a gimp like me - laid up on the couch (today from my spinal tap and other days just from pain, exhaustion and fatigue), home-bound 5 days out of every 4 weeks on IVIg, plus endless doc appointments, tests, rehab, and occasional hospital stays.


Second Guesses
As I write this, I'm second-guessing my honesty: what will my current/future/potential employers think? Am I shooting myself in my neuropathic foot? Is disclosing the pressures, disadvantages, and discrimination against the disabled (yet abled!) worth the potential harm it could inflict on my own money-making, career-keeping potential?

I'm also second-guessing my potential - for recovery; for employ-ability; for my own value to this world, this economy. And therefore, I feel remiss, that I'm second-guessing everyone-else-who's-like-me's potential.



PLUGGED

Plug for Rich Man's Hope
It's 8:41AM and, ironically, Bill Cosby and Dr. Alain Poussaint are on the Today Show (click link to see the interview) talking about hope, potential, and role models (as well as promoting their book, Come On People) - not just for African Americans but for people with high blood pressure, a little on the easy-side of disease, but hey, at least they acknowledged some sort of chronic illness.

Know your history, know your future, they say. I'd love to take their advice, but for those of us with rare diseases, is there enough history to learn from? We certainly have role models, like Superman, but he had money and fame behind him. What and who do we normal, bourgeoisie sickies have pushing our wheels up, up, up, up hill?

Sure, there are examples that we can mold to our lives. My uncle's fervent fight against his fatal diagnosis is my inspiration, but it's not my answer. His situation does not match mine. I have met and adopted my superheroes all over the world - other TM'ers, my family, my doctors, fellow neuro patients and disabled friends - but we all have our own story, our own path, our own battles, and our own abilities and inabilities, and our own visions of what we want from our lives.


Third Guess is a Charm
I'd love to say, Melanie, Come on People (me), click my heels 3x, wiggle my ears, flare my nostrils, and have a luminous answer. I may or may not have to devise a new career (again...) - that's an unknown until recovery rears it's pretty spinal column - but no matter what, I have to redefine myself. I have no choice.

From the day I became incontinent in front of Rittenhouse Square, I began transmogrification into the porta-perma-cathed-spinal-tapped-IV'd-thin(literally)-skinned-immuno-suppressed-puffy-cheeked(though my mom says I look better this way)-boobless-buttless-bruisable-spasming-occasionally-partially-paralysis-legged-word-losing-short-term-memory-pants-pissing-fire-body animal of a human that I am today. And that's me - drugged, poked, prodded, pained, forgetful...

and adapting. After all, I'm in my third generation on this earth. I better be able to figure out some things on my own, right? We lose our right to make excuses, when we gain our right to vote.

I stink at asking for help. I want to make it on my own. I want to recover. I want to be me.

Every day, we are new "me"s. My new me, just happens to be like an earthquake that doesn't have a lull in sight. But we TMers are used to balance issues. That's what walking canes and durable medical equipment are for.


Questions, Answers, Plugs
I've asked a lot of questions, and I've given few answers. I've plugged a book by a famous man and a rich man, so now:

I'm going to make a little plug for me. (big font intended...think bullhorn announcement)


Neurochic, neurochic, neurochic...remember the name
While I still don't have answers, I have plans, and one is called neurochic. So, check it out, tell me what you think, tell me what you want from me, from it, and if you can, help me make it happen. Please. I do need your help. And I want you to be a part of it too.


I'm sick of the ugliness of this diseased world. Are you?
Many of us, sick or not sick, are lost in this world; in this economy; in medical, corporate, and governmental bureaucracy; in our own reality vs. reality vs. reality (repetition intended) heads. I happen to be one of them with some exceptional circumstances, but I'm one of many in this latter category.

(Another plug:) Neurochic is my first step out of immobility and into ability, in this case a very fashionable mobility.


This Ain't No Martha Stewart Thang
So, screw the this grisly world and our uninviting-Martha-Stewart-good-host-lesson-needing- minds that don't have space for me or you. While neurochic doesn't answer all of my questions, nor was it inspired by the BMC-induced spinal tap of yesterday, it is part of my answer to my own uncertain existence. And hopefully it'll sex-up the unsightly world that we - the deformed, disabled, sickly, ailed, jobless or soon-to-be jobless - have no other choice but to exist in.

-End Plug-