1. On Losing - voice, rhythm, the word I want to place here; 2. Quote of the Moment... 2 versions.

1. 

On Losing: 

voice, rhythm, the word I want to place here

I have been lost. This happens from time to time - in taxis en route to....?, yes, it's 1995, how did I get here?, where is my shawl?, where did all this blood come from?, my chin's split open!, did I fall? was I mugged? pushed accidentally? and when? and where? and how?

Since we last saw each other, I've lost my voice - the CRPS taking over more of what was once mine. But my voice has returned, speaking and vision (take this how you like). And I lost you in the crossfire. So, how have I existed these past few months without you?!

If I answer, I'll give away the punchline, much like premature textulation(TM)*. Please forgive me. I'm excited to be here, to say hello and send gentle air hugs to my brothers and sisters, my non-neuro friends and family, readers and new readers too. We have a lot of catching up to do - more than I can recall (lucky you).

Cross your pain meds and hope I can still write. Put your pain patches on, 'cause I'm going for a ride... hopefully one that's followable (insert stupid smiley face).

*Neuro for sending a text before finishing typing it.



CALL ME SISYPHUS

Being sick, recovery, relapse, see then not, a blur, double, triple, quadruple, kaleidoscopic, multidimensional as though a person becomes 2, 3, 4, of itself sideways and back ways - 8-dimensional "sight". This is called living like Sisyphus, better, worse, up, down, stand, sit - just for a moment, bed-ridden, hospital-living, home-bound, out-bound with caution: the right shoes, the necessary accessories to protect this angry body and its burning skin from the vicious knife-throwing wind, crippling cold, or heat that melts what muscle we own - temporarily as it is, even our eyelids, napping beauty.

I'm embarrassed by my absence. My weakness. A sadness that waffles among hate, fatigue, active ignoring - the phone, the people I love who are ignoring me, leaving me, forgetting, sick of a sicko with bravado. This winter and spring I relapsed and relapsed and relapsed and relapsed with flares and flares and exacerbation after exacerbation.

TRIFECTA ATTACK

The trifecta, all three of my neuro disorders, turned on me consecutively and then for the finale in concert. Scarier and more than "more" upsetting than the CRPS flare that took my breath away (truly) or the back to back MS exacerbations, was my first TM relapse - 3 months after my 2-year recovery mark.

Lucky

This time, my organs were paralyzed rather than my mobility. Whew! The last weekend of my family visit to Pittsburgh, I filled it with a first-class party in one of Pittsburgh's esteemed hospitals, known as Presby - where, without an adult CRPS specialist anywhere in Western PA, they kicked me to the curb the morning after I arrived by ambulance. Short and sweet and useless. Had I been in Philly, that would have resulted in at least a 1- or 2-week respite.

That Ain't My Ho'Po 

In the ER, my entire body convulsing in myoclonic seizures like a pissed off horse holding a 3-hour grudge they quickly got me into a room, as I was scaring the other ER attendees and some residents too. Once in my aproned-off room, still myoclonic and my bladder frozen and uncooperative, filled with 1600cc - enough to Wow! both of my nurses, as well as the idiot resident who squeezed my hand like a corporate power shake then slapped her unusually large hand down on my thigh. 

Needless to say, as I was having my bladder professionally drained, I schooled the daft resident in CRPS symptomology and etiquette.

Let's Celebrate!... before and after we mourn.

I finished the wild weekend, weak and in heightened CRPS pain enjoying the company of my family, especially the cuddle time on the couch with my grandmother, not knowing that would be the last time I'd see her, my nieces, and my bro, during the part of the year - my 7-year-old nieces birthday party!

Which, by the way, I plan to party like a single-digit-year-old this birthday year. Theme suggestions anyone? July's a comin'.

Having gone through divorce, becoming a full-time patient with three neurological disorders, two of which are very rare, incurable and misunderstood, I've learned, or rather taught myself to live without expectations, or at least try my damnedest .

Huh? 
Shit, I forget where this paragraph was going. Neuro Brain.

I'm no Schwarzenegger, but I'll be back (with a heavy German accent).
Pardon me, while I pause for a day or 2 while my brain recovers. I'll return with the rest of part 1, and hopefully I'll even get to part 2 in the same post.

To be continued...

PS There are about 10-15 unfinished posts wasting away in my draft queue. By quick glance, some of the titles look pretty juicy. Don't be concerned if you come across a brand-spankin'-new post dated in 2009, but stepping out in 2011. This time, it's not dementia - most likely. I'm attempting the neuro-impossible: to finish what I start.

Back to the ho'po'

For those of you that don't have a home away from home, ho'po', is melanie-ism for hospital. Second time this year...it's a slow 2011!

This new flare started last night; when I have more time I'll explain it to you. But for now, just wanted to let you know that myself, and all the posts I haven't finished for posting yet will be in Hahnamann for a week or so, give or take.

Check back soon.

Your Chronic-Neurochic-Glamour-Gimp-alicious-Sista',
Melanie

IVIg Activism: An AWESOME IVIg Campagin Video & YOUR TURN to Speak Out

Michelle Vogel

This just in from Michelle Vogel of the he Alliance for Plasma Therapies:

On February 10th, the Alliance for Plasma Therapies and the MS Society are introducing legislation in CA to stop the practice of tier IV plans/specialty tiers/coinsurance in private insurance plans in the State of California. We are going to be holding a press conference in San Francisco and ABC News wants to interview a patient who has been forced to pay coinsurance (instead of a flat copay per infusion a percentage of the cost of their IVIG). Please let me know if this has happened to you and if you are willing to share your story. You can email me [Michelle] at mvogel@plasmaalliance.org

While this initiative is currently for California, and this call for patients is specific to Northern California Patients, I hope we can get the Alliance, our local MS Society branches, and maybe even my friends at I.G. Living and Families USA to not only advocate politically on a regional level, but to continue this specific political and community awareness campaign throughout the US and beyond.

 

I must admit first, I've been out of the activist loop as I've been recovering from a triple exacerbation that landed me in a respectable Western PA hospital (that DID NOT KNOW WHAT! to do with me) while visiting family and hasn't given my portacath a break since. (This is my third week straight attached to an IV pole and the third treatment type of infusion therapy.) So I do not know if or what compatible campaigns are happening in Pennsylvania, or any other state (other than Cali) for that matter. Yes. I am an ignorant blogger. Tsssk, tsssk. Shame, shame. 

Since when have I cared about the judgments of dissenters or righty tighties????, unless they are my mother or brother, of course.

 

But weak, delusional, flared, or on fire, I'll never stop bull-horning about Aetna's corruption and its life-threatening effects. This is an issue that affected me so profoundly adversely, thanks to Aetna (you can find many a post about them and my experience), that it's hard to know how much healthier I might be today if it weren't for their capitalist, self-serving policies.  

 

As may have heard this from me, or read about this in a new book on the subject (neuro moment... title, eek), I had to lose my vision, after losing multiple appeals for IVIg coverage during most crucial 3 months of my recovery from Transverse Myelitis, despite the help of THE amazing pro-bono attorney, Jennifer Jaff, the brilliant visionary behind Alliance for Patients with Chronic Illness.  

 

I should be grateful that I didn't have to repeat the battle with my current insurance company, however I too must pay coinsurance on my infusions - and even without TM or MS exacerbation or an RSD (aka CRPS) flare-up, I survive off the fruits of many many infusions and plasma therapies.

And this is something I still can't understand... 

 

Why is being sick so expensive, often even more, sooooo much more money than the limited income SSDI and/or Long Term Disability provides us certified gimps to live? And even more offensive, SSDI makes us wait 2 years before receiving Medicare. 

 

But that's another action to be redressed again, don't worry.

 

If you're not inspired yet by all of these impassioned people and non profits, you will be. Watch this video.  

 

 

So, pretty amazing, right? Well, what are you willing to do about it?

 

Let's start with a conversation. In lieu of get well flowers, I'm humbly asking you to:

 

Help this to be the most active comment section of any Neuro Detour post to date. 

 

Any ideas on how we can spread this campaign into our cities and states? The forum is yours, ours now. Let's share our ideas. Let's work collectively. Let's share our successes and failures. Whether you're a full-time sicko individual like me, or a part-time IV dabbler, your ideas and your voices are crucial. They are the first step. 

Come on now. Edjumacate me. Please?

Let's (me) set a goal*: 10 comments with 10 comments on those comments. 

 

Meet this goal, and maybe I'll even give you a prize!

*This may be subject to change at any time for any reason by the author, or the author's mind-controlling medications.

 

 

Hey Yinz and Non-Yinzers, Just a "Quickie"

Hey Yinz* Guys,

Pittsburgh: as Seen in Tourism Brochures

I'm writing you from Allegheny's county seat: the grave Pittsburgh of gray skies and killer rivers; of old wealth and Welfare; 446 bridges - a sturdy claim of its singularity - flanked by pot-holed streets made grayer with murky rain and snow and coal-stained buildings that reminisce booming days of blue-collar money and the ultra-wealth of steel, as though both - the city's gothic architecture and its Vitamin D-insufficient faces (what few I see from my room, in this non-gimp friendly city of hills and 'hoods) - still mourn, gray tears - will forever mourn - a proudly proletariat industry that would have made its people and neighborhoods the Hollywood of steel.



A GRAY LIFE IN A GRAY HOMETOWN NEAR A BEAUTIFUL PARK THAT'S LEFT AND IT SUCKS: a tangent from the quickie, for those who like it longer and, yes, it's appropriate here, harder
At "home" - a gray IV pole stands on gray basement carpet, and a devastatingly glorious neighborhood view - despite its classification as The City. Backyards with old wood fences, naked trees, preceded by bigger and older naked trees that circuitously lead to any one of its ubiquitous natural parks that changed me, that changed my world.

Once upon a time, Frick Park was my mistress, my paramour, my other half. Always my lifeline, I wouldn't live anywhere that wasn't within walking distance to one of its entrances.

Now, no matter what the season, it's too rich with tiny mountains of stony hills and narrow sloping paths, where I, probably not alone, walked right into daily peace, a heavy-breathed hike that gifted me with revelatory visions of dances completed and personal philosophies blossomed into manifestos. Every inhale and exhale, each person, each animal passing by, an accidental conversation with a stranger, or a friend you've known for years but never knew your shared adoration for the trails and all its live-in animals and bugs and all the people and animals that visited daily or infrequently to get their dose of whatever the Appalachian's remnants gave them.

Unlike me, Frick park was protected by the city's old wealth, which also happened to share its name and closet many unpunished atrocities. I guess that for every death resulted from their whim of the week, they must have planted a tree, the only penance they knew how to live with, and the gray city slowly became a little bit greener.

Being in Pittsburgh, now 4 weeks and counting, for a balanced mix of medical and familial demands, and sitting here in the gray basement ala bedsit with Frick Park less than 2 miles away, is like knowing your High school sweetheart, who you married after college, and you lived in love in a beautiful house in a beautiful city with beautiful friends that you made together, and at 30 he left you just because, or that's what you tell yourself to make it easier to accept.

No matter the reason. It fucking sucks.

Even though Frick Park and the Fricks' endowments actually supported me with commissions and performance fees, and their grounds and homes and galleries are nearby, we are separated, and that's not my choosing. Do you know that feeling? Of something broken that you want to fix, and you have almost all the pieces and almost all the tools, but you're screwed because those missing bits are exactly what you need to fix, to get back what you want, that something that's almost whole, but you're powerless, because you just don't have everything that it takes to get what you want; to have the life that you spent your entire life creating.

When the Neuro Gods struck, they bankrupted me and took my Frick Park.

 
AND OUT OF THE WOODS: There's a world in disguise, or inside of (me)...
Although I have a backlog of about 5 posts (just counting those here in neuro land) that still need editing**, finished thoughts lost in neuro black holes, and a little TLC before I release them to you, I wanted to send out a quick update about my latest "quickie" and other things 'burghian. As I'm often told, I'm thoughtful like that.

As you are used to, if not expectant of, my vicious honesty and transparency, today was the first day of many days of a brand new component to my neuro detour (which by the way, you probably have figured out, is becoming the longest detour I've ever experienced, or perhaps even in the history of fierce, successful-ish, (dare I) sexy-ish (oh, yes! say it loud and proud with neo-feminism!), multi-talented, multi-tasker (no more, boo hoo), ultra bright (as in my skin glows day and night, and i have a pretty decent IQ), visionary, petite and on the pretty side, half her age looking, frequently carded at age 35  woman with a plan, or actually many plans that she could recite on command(o) on the planet called Earth, where she once resided***).

Step: Preparation; Photo Credit: Me

Today, with cute undies off, supine, legs akimbo, facing my mother's mirrored closet doors, my Pittsburgh nurse, Pam, (it's IVIg week) whipped out the sterile gloves, spread me apart, gave me my latest-in-life anatomy lesson, and taught me how to self-catheterize.

And then, as omnisciently stated in the title above, I kindly thanked her for the quickie, and invited her to join me in the garage for "the after cigarette," of her answer, I shall not comment.

Not only did I just say it - all of it: cath, me, quickie, oh my! - I documented the entire strangely humbling process with step-by-step photos. (Somebody should really pitch in and get me an SLR already, doncha* think?)

By Lesson 2, I'll be doing it single-handed, so to speak. More documentary photographs to come (without which my short-term memory would leave me and my cath kits without a clue), and I'll post all slightly less than NR(neruo rated) on Neuro Detour's Flick'r page, if there's video, on You Tube too.

Why, all of a sudden after almost 2 1/2 years of regular UTIs, bladder infections, and a diagnosed neurogenic (spastic) bladder, have I received this icky (ahhhhh...well, at least some one's touching my vagina) order?

Because the good ol' urethra's stopped tickin' on its own.

So, fellow neuro-ites, I've joined the minions. And for you non neuro-ites, we TM-ers and MS-ers and other neuro-ers, often have a multitude of bladder issues (bowel too, but that's a secret between me and you, ok), of which I can proudly say, I've probably seen, i.e., had, them all now.




AND WE'RE CATHED, I MEAN OVER & OUT
As, we say, her in 'da 'burgh*...

Step: Holy Shit! Ouch, ouch!; Photo Credit: Me

Ciao**,
Melanie of the Self-Catheterizing Minions

PS This is just the "tip" of things...

PPS  Happy New Moments Everyone!

PPPS The answers to all your stars below







*Pittsburghese

**Not Pittsburghese. In Pittsburgh, there are no linking verbs. The phrase would be, "needs edited," sort of like our other favorite, the [insert item, e.g., car, clothes, etc.] needs warshed.

***I am not conceited, I mean it. I'm just repeating things I've been told an' 'at*.