Get into My World! Get Off My Blog [Hater]!

No. Not you! You, my sisters and brothers and distant compassionate readers of true interest, stay with me.

The word gets out. It's a life. It shouldn't have to be...

VULNERABILITY

And another, more psychologically based phrase, your...

MORBID CURIOSITY

You've missed the whole point of this blog. I'm writing about the rare and disorderly - my rarity, my non-compliant body, how all this affects me... us  - for this very reason. To end our feelings of vulnerability in the realm of those that are currently "whole", whose appointment books aren't littered with doctor's names and treatment, surgery, and procedure schedules, and personal reminders of who we are and what we do and what we did and what we should do. Knowledge, this shared intimacy, this bond I've created with you, should go beyond morbid curiosity, beyond pity and judgment. You should move beyond your fear of the different, the moderately deformed; our hearts are more whole, built and rebuilt, cemented and carpenter hinged, soldered and gorilla glued - so strong what's broken becomes unbreakable. I'm talking bones. I'm talking heart.

We, the different than you, the vertically challenged, the numb, the pained, the beat down, the dishonored, the disenfranchised, the differently abled are more able of heart than your life experience can provide.

To survive these lives is to be a superhero. We are ninjas and black belts of the earth and sky. We are divinity and soul that fills oceans and earth. We are richer than Oprah will ever be in dollars or sense [spelling intended]. We are reincarnations, multiple lives within however many years our bodies have sprawled this planet. We are astral projections. We are global realizations. We are strong. We have self-respect. We have accomplished the impossible. We are alive and smiling. We appreciate life more than you, and we probably enjoy it with more vim and verve too.

We deserve to be treated with respect.

So, if you've come here to "research me." To decide if I'm worthy of your time, a 2nd date, your consideration, your friendship, your purchase (of my artwork or neurochic)... you've come to the wrong place. This is for people who care. This is for people who want to learn more, to feel what we feel, to think what we think, to know what we know.

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.

Top 5 Benefits of Using Natural Health and Beauty Products | Overstock.com

Check out what capitalism has to offer our tortured bodies:

Nose Up Lifting Shaping Beauty Clip

Top 5 Benefits of Using Natural Health and Beauty Products | Overstock.com


PS Picture added for your own enjoyment.

Where the hell have you been? And other awards.

My inborne Jewish guilt  has gotten the best of my slacker-ality (add it to the neuro-ictionary), and whala... here I am, with too much and too little to say.

So, here it is, in the best form ever invented - the list form:

1. WE WON AN AWARD!!!!!!! 
1. 
   
   
   
    
2. Thank you, thank you to all who nominated Neuro Detour. Wow, what a friggin' honor! Gee, it almost makes me feel lucky to be so effed up that I can write Neuro Detour and win top 35 gimpalicious blogs of 2010. Yippeeeeeee!
   
3. Now for the down and dirty....
1. it's been a shitty ride as of late, but (and there's always that stupid optimistic idealistic but) I've been lucky too to be in the right place with the right people to get the best out of this life that I can.
4. I did have a recent fall or 2, cracking a rib or 2, but mortal pain is nothing once you've had RSD pain, and I've had quite a bit of that.
5. Vertigo has taken me way yonder to using the original Vertikal Kris-O-fellow-
   TM-er-2nd-time-Hand-Me-Down-WALKER-from-Illinois. 
6. So, special thanks to Verikal Kris for keeping me vertikal [sic]... for the time being.
7. And dear Judy, thanks for being my partner in RSD and portacath crime. We all need a bosom buddy, or in our case, it's porta-buddy - same diff.
8. Being sick really fucking sucks.
9. Losing people you love because you're a sicko really fucking sucks.
10. Losing yourself because you are a sicko really fucking sucks.
11. Losing yourself because you are a sicko on really whacked out meds really fucking sucks.
    
    
    

    Image by christophe dune via Flickr

    Nice Logo... not quite, but close....

12. Some of the meds, like IV Ketamine, not only make you (me) better, but get you (me) trippin' and hallucinating grand realizations that disappear as quickly as the last 2 years have.
13. I am now a graduated TM-er, reaching my 2-year anniversary in August, 2 weeks after my 35th birthday.
14. My Neuro Detour should be over.
15. My Neuro Detour is just beginning.
16. I am no longer a TM-er.
17. I am a TM-MS-Stage 4-RSD-aka-CRPS-er-with lots of ancillary shit diseases like osteoporosis tied in.
18. I belong to no one, no group, nowhere.
19. I belong almost everywhere.
20. I hate that I am not free to go anywhere, even certain restaurants or stores or art galleries because they are not handicap accessible.
21. I hate sickness, and bigots, and nasty cabbies who charge you before you sit down because you take so long to get in the cab with your walker. 
22. I hate chic-chic and down-scale department stores and boutiques who may be accessible in architecture, but not in service. 
23. I hate insensitive people. 
24. I hate inequity.
25. I hate being a triple-quad minority.
Image via Wikipedia
26. I hate that society does not commit itself to the laws of the Americans with Disabilities Act (ADA).
27. I hate that my life is so expensive, but my income is so controlled.
28. I hate that I've ruined other peoples' lives, e.g., my mother, with my chronic illness and disability.
29. I hate bitching and moaning. Mine and others'.
    
30. I have started my first real physical rehabilitation, and I LOVE it. I'm only permitted to do aqua therapy at this point, but Aquatic Therapy of Chinatown is giving me something to look forward to 3x/week.
31. I wish I could walk through life in an 8 sq. ft. pool.
32. I am practicing transcendental meditation - by prescription
33. I am exploring the powers of one's mind.
34. I am starting an international movement (in my head and on a piece of foam core): 
1. Gimp This! (imagine the i in "this" as middle finger.), of dedicated equalists, anti-disability-haters and -prohibitors (silence is as much an act of hate as exclusion, ostracizing, blah, blah, you wronged me, blah.)
2. In other words, watch out out gimp-haters and ADA-non-compliance-ers, Gimp This will get you, out you, and picket you. Looking forward to ruining your business soon. :)
35. I am selling more and more of clothes:
1. Who needs a wardrobe when you're 35 and your job title is patient? (HOWEVER,  I do not sport hospital fashion, rather I am neurochic,,,, and you could be too.)
36. When asked what I do, I no longer say writer or painter (which are both true), or dancer or choreographer (long - gone professions), 
1. I say patient. And that is at least 3 jobs in one.
   
2. I am often completely alone.
3. I am not recovered.
4. I still have no prognosis.
37. I can not go a day in public without being asked, "What's wrong with you?"
38. I can not go a day in public without being stared at by children. 
39. I can not go a day in public without being stared at by people who should be my peers, or perhaps employees. 
40. I love Provigil. 
41. I love all pain meds and pain management procedures.
42. I am afraid my doctor will retire, and I will have no one behind me.
43. I avoid people, even virtual people, when I am sad or conflicted.
44. I gave my birthday away this year, not because I don't want to age but because of what this birthday signified... what should have been the crest of closure.
1. Please take a copy of my birthday for yourself.
45. I have made scenes and thrown cups of frozen yogurt in response to injustice.
1. I have been stupid and assertive against drunken privileged white men harassing a homeless black man. 
2. And when the cops showed their racist spirit, even the black ones, I opened up my mouth again and took badge numbers and said things that could get me arrested.
3. I am a defender of my rights. 
4. I am a defender of my people. 
5. I am out of control more often than before. 
6. I am tough, and I can be mean if necessary. 
7. I may be a cripple or a glamour gimp, but I'm not gimpified. 
46. Please help me Gimp This here and elsewhere.
47. Doesn't asking for help suck?
48. Whole numbers and silence are for pussies.

PS I am not participating in POST (Philadelphia Open Studio Tours) this year. See right column top for more info.

Ketamine Cam 4.12.10: Day 8...with special on-phone guest

There are 3 videos in this post, because I, ummmm, am still on ketamine while trying to be a rockstar procuder.




and here's #2:




and here's #3:

New Year New Shit

It's been several months since I last posted, a personal post, a far departure from my past glaring observations and ruminations of hope, humor, and inspiration. Well I'm here today, or rather this evening or morning, sleepless or wake-less, a year and a half into this neurological black hole.

1st step: Transverse Myelitis

• piss your skin tight pants under the sun and in public
• wake up without legs
• get diagnosis
• begin life in and in and out and in of hospital
• rid life of negativity - people, thoughts, things not worthy of the healing cause
  
• get attorney to fight Aetna for right to treatment
• Aetna takes monthly payments and my most important 3 months of recovery
  

2nd step: Encephalitis

• lose cognition
• lose hearing in 1 ear
• don't take thinker pose, it hurts the jaw bones
• lose vision
• Top Doc says, "you're crazy, you can see."
• use walking cane as seeing eyestick to find way home
• lose identity
• lose self-confidence, or just lose, lose at games that you were the queen of winning, lose shallow lovers or hallowed loves - in sickness not health, there is little distinction
  
• delirium and hallucinations set in
• birds enter my apartment, "let's go for a walk"
• I come to, just before following them out my window
  

3rd step: Multiple Sclerosis

• MRI says, "lesions on brain ventricles"
• Doctor says, "daily injections; gain weight...tomorrow celebrate your birthday...i'll see you thursday"
• Doctor says, "keep your chin up"
• there are people with death sentences
• I say, at least it's not a death sentence
• two weeks later, in hospital, with sepsis
• i am dying. i am living. i am dying, then living.
  
• they ask, What year is it? I mumble, 1985. I'm 10, nothing has yet happened.
• I sleep and sleep, I can not get from my bed to my portapotty.
  
• I sleep and sleep and am accused of hoarding pain meds.
• two months later, I sleep in my own bed, back where I started
• It's been 15 months, at least 10 surgeries; it's time to empty the 'roids from my de-muscled body
• I return to my bed, swallow my nighttime pain/spasm/tremor/sleepless nights cocktail...hours and hours, still awake; too awake, too alive, ingredients for pain ascending
  

I'm one of the few or many with the lucky triad of neuro sentences, and I've been fed hope and lies and truths, and I've chewed it like a cow and its cud and spat it out smiling, and with each transfusion of "things will get better" jargon, I get more and more meds....and more diagnoses...and more treatment plans...and weaker in body...and weaker in something people cal spirit...and weaker in mind, brain cells are dumb cells, but now I can watch a movie on TV - beginning to end; popping 2 oxycodone midway - this is progress. This is progress?

This is not pity. This is my brain on neuro disorders and neuro drugs. Where is Melanie? She's not here this year. She's on a neuroflight, no vaccinations necessary or allowed - away from disappointment, anger a lot of anger, away from love that never was anything more than more negativity more spinal column aggravation. This life is aggravating. People are aggravating. Health people, stay away from me this New Year. I most likely hate you. Don't interrupt my journey with your champagne happiness. Perhaps we can meet again in 2011. But no, that's hope, and hope is disappointment. Swallow it all like midnight's toast, "to nothing, to nothing, hurrah, hurrah."

Friends say, you deserve to be sad, you deserve to be angry, and being sad and angry makes me more sad and angry. I used to think, at least this neuro shit won't kill me. But we now know that's not true. I'm dressed with a permanent permacath, that shakes its udders at infection, like a blond with a boob job worth flaunting. And then there's the portacath too, hovering in the shadow of its neighboring death trap.

I follow instructions, mind the rules, not showered in 3 months, keeping my central line clean, keeping my life line from death line, sleeping on ER benches and beds, digging through the bureaucracy and hypocrisy of insurance and health care. There is not enough Zoloft to overpower the neuro triangle.

I am a hospital bracelet - white, red, or yellow; such happy colors.

And here I am again, solo, baring my soul, a sap for a soul, a misplaced soul, solo, always solo along sidewalks of healthy happiness, such lucky happiness, such insensitive happiness, such insulting happiness.



Perhaps there will be links and pictures later.

Happy TM Anniversary to Me and Other Contradictions

Is one year of living with Transverse Myelitis something to celebrate? Probably not.

But considering that I live in a fantasy world called Mel Land, where rights are wrongs, and wrongs are rights, and left is the only political option, and any day of importance - whether heartbreaking, backbreaking, lifebreaking, or just fucking shitty - is reason to celebrate, why the hell shouldn't I celebrate. After all, I've survived (for the most part) one of the shittiest years of my life. And who knows where next year will land on the shit meter?

Breaking news: Just got a call from Dr. Schwartzmann's office. It's back to the hospital I go - 2 more weeks for inpatient plasmapharesis and who knows what else; starting off with surgery to place the permacath and possibly the portacath too.

Now I'm questioning my own determination to celebrate my 2nd year of survival. Because at this moment, I'm crushed. I just want to be free.

This is Your Brain on Acronyms & Self-Injections

After 1 year of MRIs - all of which were squeaky clean - my brain decided to invite 3 lesions to join in on the "let's fuck with Melanie until she can't take it anymore" bandwagon.

So, as I approach my 1 year anniversary of living with, accepting, or rather fighting (under normal circumstances I'm a lover not a fighter) the oft embarrassing, disabling, Richter scale breaking physical and mental side effects that accompany transverse myelitis (TM), I have been bestowed with yet another, but much more popular neurological disorder - Multiple Sclerosis (MS).

Unlike TM, MS has received wide support, in-depth research, and outstanding public awareness. Compared with the 30,000 Americans living with TM, MS claims 400,000. Quite a difference. So, yay, not only am I "1 in a million," but I'm finally hanging with the cool kids. It's hip to be neuro sick. Jealous?

I'm also joining the familial roster of 2 cousins with MS. Don't you love fitting in? I'm so like all about it, ya know.

In the 6 weeks since diagnosis, I've begun taking Copaxone®, a daily self-injection MS drug. I always knew that shooting up was cool. I'm tuff like dat. (Y'all better have a sense of humor, or I'm going to be in a lot more trouble than just the silent wrath of a couple angry neuro disorders.)

Every morning, I give myself a shot, and I've become such a pro, I can even IM on Facebook and self-inject at the same time. Except yesterday, when I was totally focused on my injection site, I screwed up and shot right into a blood vessel. Oh, the gore!

Copaxone is supposed to have the fewest side effects of all MS meds. But I'm experiencing a doozy of one (and a just a wooshy of another). Aside from the protracted bee sting lovin' feeling that follows each shot, the queasiness lasts about an hour. But the anxiety is simply outrageous and offensive. How dare this drug play with my emotions! Within an hour of taking the shot, I'm ADHD to the 100th power, as sensitive as a wallflower, and as unproductive as Paris Hilton (tho if she does her own makeup, she may have 1 up on me).

THIS ISN'T ME!!!!!!!!!!!!!!!!! - not even the new TM me vs. the mostly carefree dancing down the aisles old me.

No one likes a person on edge, an over-sensitive misconstruer, or a jittery MS junky that stands out like a man covered with glitter at a church service. So what am I to do?

My mother thinks I'm angry at her. Friends are finding me aloof or unpredictable. And add nervousness to the anxiety when dealing with male-female communication in the digital age. Oh, the pain of being so strange!

I can start by ridding my body of glitter, but that won't take me as far vanilla as I need to go. But I know the drill:

Step 1, call the doc.
Step 2, wait for the doc to call back.
Step 3, do what he tells me to do:

• a. nothing "it's all part of it"
• b. "stop the meds immediately"
• c. (and I hope it's this one) take 3 Xanax and call me in the morning for 100 more.

You Haven't Written. You Haven't Called...

I admit. I have been AWOL from the textual side of this blog. I hope it hasn't been too lonely or jealous of all the attention I've given to neuro art, which is also a detour, but one with a very different mode of expression.

Since I wrote last I've had:

1. 7 sessions of plasmapharesis
2. 1 permacath surgery
3. 2 trips by ambulance to the ER in 1 week
   
4. 1 hospital stay
5. 2.5 5-day infusions of IVIg (I'm on the third one currently)
6. 1 rained-out art festival
7. 1 visit from a high school BF
8. 1 emergency visit from my mother (on the 2nd trip to the ER)
9. bi-weekly physical, occupational, and speech therapy sessions, and
   
10. 1 break-up

And I've probably made at least 50 new paintings, collages, or drawings, plus a small chapbook. I've also recently:

• doubled my dosage of anti-depressants even though there are still things and people that make me smile
• taken 10 steps forward, and at least 5 back (cliche noted and accepted)
• received two original hand-made canes for neurochic from 80-some-year-old woodworker, Bart Davis
• filed for social security benefits
• worked with my rheumatologist to find a method by which I can tolerate the chemo
• used a Barnes & Noble coupon to get an amazing deal on some art magazines
• was forced by circumstance to communicate with my ex-husband who despises me (how can anyone (other than the sick person them self) hate a sick person?!)
• watched my cheeks puff to Biggie-Sized proportions
• collected my south-bound traveling hair, aka alopecia and
  
• used a knife to cut vegetables for the first time since I got sick

Despite all the progress, the full-time-ness of my sicko existence, and the ideas and projects I have splashing about in my mind, my Transverse Myelitis (TM)-Meds-Situational depression has blossomed...like my cheeks. If it were just the puff face, my vanity could handle the blow(fish...couldn't resist the pictorial pun), but this cluttered mind is overwhelmed and underwhelmed.

I'm bored.
I'm tired.
I'm sleeping my life away.
I'm bored with being tired.
I'm tired of sleeping.

Can anyone relate?

At my last doctor's visit, he said to expect another year of life as it is - symptoms, side effects, treatment I assume. Can I handle this? On some days, I think why not. On other days, I want to turn my tremors into an earthquake just for some excitement. Alcohol doesn't even bring me pleasure anymore...I'm too tired and nauseous for it.

Without wine, what is there?

And let's talk self-esteem. I am not used to this low self-esteem thing. And all because of some puffed up cheeks, an errant right side of my body, tremors, and myoclonic seizures of my entire body and vocal chords. Am I vain or what? Or is it deeper than the way I present to the world? I think it is. I know it is. But isn't it obvious - my mortality has taken a serious beating to its ego, and the "not drinking" to drown out my sorrows isn't helping.

But really, I think it's a triple-decker issue of pain, cognition, and time. All of which make expressing myself visually rather than verbally, more enticing. When you don't know what you're doing (as I have no clue since painting is new to me), there's excitement, doubt, questions; it's like a game show and I'm the host. It's like having a job that challenges you, which in my neuro case, isn't possible to any degree.

So Why Haven't You Written?
Because my life sucks, and I don't feel like I rock at the moment. I didn't want to disappoint you with my own disappointments. I'm Melanie, the optimist, the glass 2/3 full girl, the glamour gimp. Invincible, unstoppable Melanie. I didn't want to present the ugly side of me - the 'roid-raged-engorged-faced-chemo-nauseated-TM/meds-exhausted-barely-enough-energy-to-feel-sorry-for-herself-Melanie.

But here we are, guests at my pity party, and what does that get us? A real person, with real emotions that tumble and turn like laundry if I could do it myself.



Painting: "Puffy Cheeks" by Me

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 blog...how 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.)






EXCUSES, EXCUSES, OR TODAY'S 15-MINUTE PITY-PARTY

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.



SLOW & UNSTEADY
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.



REBEL WITHOUT A CHOICE
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?

Yours,
Melanie

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. (http://www.acadia-pharm.com/programs/neuropathic-pain.htm)

Data Dummy: Johns Hopkins - The Neuro Masters(?)

An Update-less Update
A Fruitless Follow-up to: Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha (posted 12.17.08)

Author's Note: I am typing this by muscle memory through blurry eyes and double-vision. Please forgive typos. Disclaimer: Quotes may not be exact due to short-term memory.



I have never been more more misled or lied to or misled since my diagnosis of transverse myelitis(TM) on September 18, 2008. Relative to my 33 years on this earth, that's a statistical nightmare.

Who are the culprits? Enthusiastic-I-Heal-All-Wounds-And-Ailments-Specialists.

While I appreciated the optimism (and believed it) in the beginning, I'm up to my c-spine with broken promises and the knee-knocking disappointment that accompanies them.


JOHNS HOPKINS: THE TRANSVERSE MYELITIS "MASTERS"
or
PROMISES SHROMISES
It took a lot of work: on-line-researching, faxing, phone calling, faxing, hospital-records-visiting, faxing, plane-and-train-reservation-making, emailing, faxing, referral-getting, case-worker-consulting, pre-cert getting, phone calling, emailing, faxing, work-leave-permitting (I've used up every sick and vacation day and then some for hospital stays and surgeries), and in-Baltimore-transportation-arranging to prepare for the (relatively speaking) biggest, best-est opportunity of my lifetime: my appointment with the masters of TM.

Not only was I offered an appointment quickly - less than a month after they received all of my records, but as fate seemed to have it, they were practically in my back yard (it's a 75-minute train ride). I even had to turn to down an earlier appointment because it coincided with the start of my 2nd round of plasmapharesis treatment. Getting into Hopkins was like winning an academy award, being accepting to any Ivy League School, getting a $10K raise, winning the frickin' Olympics Gold Medal in swimming without knowing how to swim.

This was a match made in heaven, and in heaven there are no sick people or alarm clocks, everyone smiles and smells like vanilla blossom, nobody loses their keys or their lunch, and all questions have answers.

On December 17, 2008 - three months after my diagnosis, and two days after my last plasmapharesis treatment - my mother (who flew to Philadelphia from Pittsburgh (again) the night before) and I rode the 7:30AM train to heaven, which in this case was located in Baltimore, for my appointment with Dr. Pardo, a specialist at Hopkins' Center for Transverse Myelitis Research.

At the end of that 13-hour day, my mother was convinced that heaven did exist - we were on the right(eous) path. But I was tired, frustrated, and admittedly a bit puffy-eyed because we arrived with questions and left without answers, and as we all know, that's not heaven's tenet.

And the reality of hope sets in:
But by the next day, once I had processed the information and awakened from my Ativan coma, I recognized that no matter what my test results were, Dr. Pardo was going to help me:

1. He PROMISED to verify the TM and seek the larger, clearer, more inclusive diagnosis that he believed he would find and begin a new and improved TREATMENT plan based on those findings.
2. He PROMISED that if they were unable to make a clear diagnosis that they would DESIGN a TREATMENT path (perhaps by trial and error?) REGARDLESS of whether or not the new data findings were conclusive, which would be based on a "best educated assumption" of what was debilitating my mind and body.

These wonders were to occur within three weeks. Additionally, we were told we'd receive the results from my latest MRI on their state-of-the-art equipment within a few days.

Triple Yay!
A new plan to come. New hope. New possibilities for recovery. A new me, more like the old me was in my future again. Recognizing that Dr. Pardo not only had a nice smile but was going to provide me with the most appropriate, best, progressive treatment available was all I needed to feel some relief.


THE BAD BOYFRIEND DOCTOR
After several calls to Dr. Pardo's office requesting the MRI results, and some in-the-mean-time-while-my-condition-is-worsening direction, we finally received confirmation on Friday that Dr. Pardo would be calling me Monday with "further instructions."

A really bad boyfriend wouldn't have called at all, so I have to give him that benefit. Plus, although he felt me up and down with soft hands and iron-hard devices on our first meeting, I didn't offer any compensation.

But like most bad boyfriends who sweep you off your feet with their charm, promise the world and the moon, and to be there when you need them, but then ultimately drop you on your ass without padding or explanation (except that it's your fault) and a devout unwillingness to answer what you perceive to be important questions, I'm remiss to state, Dr. Pardo fits that role.

Like most women who find themselves with bad boyfriends, I sniveled while he let me down, sobbed when we said goodbye, consulted girlfriends (mom, Dr. Marni, and Alicia) who rooted me on with their "you're the best", "this isn't right", "how dare he", "we won't stop until we get you better" support.

While I'm ready to give Pardo a second chance (another condition of the good-girlfriends-attracted-to-bad-boyfriends-syndrome), it doesn't change the fact that I'm pissed off - not only by his deception, but that I'm yet again in limbo. I can recover from another's perjury, but there's no way my once malleable body could fold itself into the crowd-awing back-bend required to win that game. (Sidebar: In middle school, I was quite the limbo champion.)


THE LET DOWN
Over the last four years of "dating" myriad specialists, I've devoted myself to the few who not only find the answers, but do so proactively and with compassion. I expect the same from my docs as I do from my friends, boyfriends, or employees. Do what you say you're going to do, i.e., act with integrity.

Some doctors are data doctors. Some look at the big picture. Some speak in terms anyone can understand, and some speak to you the same way they'd speak to a fifth year med student. Some give you definitive answers, and some give you possibilities. Some predict your future, and some make your future.

Dr. Pardo presents himself as a big-pic-predict-and-make-your-future doc - a total package!
But he's a data man. And my data is as inconclusive as day 1. Surprise, surprise.

Now I'm no doc, but I've had 4 months in and out of the hospital to educate myself on TM, and that included reading every scientific article available online, consulting multiple doctors, and asking infinite questions to my nurses, docs, caseworkers, and fellow TM'ers. (Sidebar: Anyone with a serious disease or disorder should be as informed as possible, because you WILL NEED TO be your own advocate.)

Though I'm a rare disease novice, I learned the psychological importance of having a plan in place as my uncle battled fatal brain cancer. The worst thing not to have when you're sick is a plan. Plans give direction, purpose, hope. Basically, a plan of action is synonymous with man's search for meaning. We need meaning to exist.

The Man with a Plan:
While my current Philadelphia neurologist (whom I adore), Dr. Schwartzman has given me a plan (which has changed as many times as my wardrobe), it was a plan none-the-less. The only glitch, and this is a major one and not Dr. S's fault by far, is Aetna Insurance's continuous denial of coverage of the plan's treatment (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story posted 11.25.08).


THE DIAGNOS-LESS DIAGNOSIS, THE PLAN-LESS PLAN
Even though Dr. Pardo ordered every test he needed to confirm my diagnosis and reveal the big immunological picture that has risen the neuro body-snatching demons, and his clinical observations confirmed a "neurological issue that represented similarly to TM," he is still unwilling to give me a diagnosis.

While my symptoms and side effects clearly match only two neurological diseases: TM and MS, and TM can exist without supporting data and MS can not, Dr. Pardo is still contrary to verify what has been diagnosed by Dr. S, one of the other world's leading neurologists, and clinically observed by the Hopkins man himself.

Pardo's plan:
He still thinks "something is going on," wants me to make another trip to Hopkins to see their psychiatrist who specializes in MS and similar diseases, as well as their Rheumatologist, who will probably just look at the blood work like every other rheumatologist.

I know I'm sounding like a grouchy baby, but even I think I deserve a moment or two of bitching and whining.

Pardo's "further instructions" included a vague diagnosis of myelopathy (without defining what it is), an unidentified systemic disorder (perhaps Lupus, which can cause TM), and he inferred that my symptoms were related to depression. Depression! Even Dr. S, Dr. Marni, my friends and family, assure me that they would be surprised if I weren't depressed by a life-changing, debilitating, painful, prognosis-less disease. Even my mother's depressed because of my TM, and she doesn't even have it.

Pardo's big but (very loosely quoted):
I don't believe your current treatment plan is appropriate or working, and I am unwilling to offer any treatment plan.

My big but thought:
BUT TM has a very short window for best-case-recovery, which for most is only 90%. I have two months left to gain the majority of my recovery, and then a year and a half more to expect minimal changes. After that, I'm stuck. I'm running out of time.

Me:
If I don't have TM, how do you explain the incontinence, the vision loss, the cognitive problems, the neurogenic bladder?

Dr. Pardo:
I can't.

Action:
Phone consultation ends. After my sob-session and friend-buttress-convos, I researched myelopathy and was lead to articles on transverse myelitis. This article stated, "You may also hear the term myelopathy, which is a more general term for any disorder of the spinal cord."

Me:
Cop out.


So here are my lay responses:

My emotional/personal responses

1. I feel betrayed.
2. I think the doctor's oath should include, Do not make promises to patients that you can not keep.
3. I cannot rely on doctors.
4. I must be proactive.
5. Accept the gifts of emotional support from friends, family, and my new special friend.
6. Accept their offers of sharing the responsibilities of pursuing plan of action)
7. Don't let disappointment/illness affect my work. (I worked from home until 11PM last night)

My plan-of-action
(developed last night in collaboration with Marni (virtual doc/BF) and mom)

1. Explore every possible option.
   
2. Swallow my pride, return to John's Hopkins and see their psychiatrist and rheumatologist.
3. Get my current reheumatologist's opinion, Dr. Huppert, who is also magnificently treating my pain.
4. See neurological opthamologist at U of Penn Hospital (Pardo recommendation; appt. scheduled)
   
5. Schedule 3rd opinion by a new neurologist (at Penn?).
6. Wait for final decision from Aetna on IVIg treatment. Hope for the best.
7. Schedule appointment with hypnotist: quit smoking by 1.15.
   
8. Reschedule my appointment with Dr. Rozenzweig, an integrative medicine doctor, at The Healing Arts Center in Old City.
9. Work with Dr. R to explore Complementary Alternative Medicine (CAM) practitioners and treatments.
   
10. See Dr. S for my 1.22 appointment.
    
11. If by that appointment, IVIg treatment is not approved by Aetna, demand next possible treatment: chemo. (Note: Dr. S is against this treatment for women of child-bearing age)
    
12. Invest in hats, scarves, and perhaps a sexy red wig, if necessary.
13. Continue rehab at Magee.
    
14. If all else fails, go to Mayo Clinic.
    

And, like Schwartzman's plan-of-action, this too will probably be revised as much as a poem.


CONCLUSION-LESS CONCLUSION
Appreciate the orange reflection of this morning's sunrise painting my apartment walls. Be good to myself. Be patient (no pun intended). Savor my extended New Years vacation and the opportunity to share it with my mother (she arrives Wednesday). Get a mother-daughter-friend Tamar mani-pedi this week (they're on sale at Jean's Nails in the 1600 block of Spruce Street!). Delight in pain-free moments. Acknowledge my improvements. Accept my deterioration...as temporary. Meditate with positive intent. Breathe deeply into my spine (OT exercise). Vent as needed. Dress better than I feel. Be bright, therefore return to Diesel and buy those perfect ass-lifting, thigh-accentuating shiny teal pants. Attempt retail therapy moderation in favor of assigning income to CAM (after I buy those pants). Drink wine and vodka...separately and in moderation. Be unstoppable.

The Shortest Day, So Let's Make This Short

The Winter Solstice, which is today, is the shortest day of the year, and it's also symbolic of new beginnings and reversals. According to the not-so-reliable-but-so-convenient Wikepedia:

Midwinter festivals and celebrations occurring on the longest night of the year, often calling for evergreens, bright illumination, large ongoing fires, feasting, communion with close ones, and evening physical exertion by dancing and singing are examples of cultural winter therapies that have evolved as traditions since the beginnings of civilization. Such traditions can stir the wit, stave off malaise, reset the internal clock and rekindle the human spirit.

While physical exertion is out of my limits today and my singing would kill a newborn, the rest of it sounds like a damn good idea.

For those of us dealing with rare, painful, or incurable diseases, days are rarely "short." Seconds are minutes, hours, weeks, or even years. And no early sunset can change that.


LET'S GET BUSY REBIRTH'N
This has been no solstice day for me:

• Asleep at 1AM, up at 4AM
• Seven hours of wrapping up outstanding personal, medical, and new apartment to-do-lists-and-last-minute help-from-mother-before-she-returns-to-Pittsburgh from 6AM - 1PM; still so much more to do
  
• Unwelcomed goodbyes
• My own further decline into transverse myelitis (TM) despite my recent plasmapharesis treatments and increased meds dosages
• Processing the guilt of forgetting a best friend's birthday because of my sweeping self-involvement
• Buying last minute holiday presents online for my brother, sister-in-law, and nieces while checking and cross-checking pay dates and bank account statements
• Wanting to buy gifts for everyone who has helped me through this period but being persuaded by my rational mother that this is neither the time to be spending so much money nor the expectation of my friends
• Processing that reverse responsibility

...and doing all of this through the pain, cognitive, and mobility challenges of a disorder in decline despite a vicious healing regimen.


I'M CREATING A PARTY IN MY BODY, AND THAT'S THAT
But here's my theory for today. It's a holiday, or at least it's someone's holiday. That's reason enough for celebration.

Question to Self: But how does one celebrate, when the greatest length of nearly every day is mired in struggle, pity, pain, disappointment (name the negative, and it's probably on the guest list)?

Answer: Repeat mantra, "My Life Sucks, but I Rock." Shout over the needling voice and stomp on the internal clutter of debility, and have a toast to disease-induced depression, distraction, refraction, fatigue...the list goes on.

Symbolism is what we make of it. It doesn't have to last forever, but for at least tonight, I plan to take advantage of the inherent meaning of the day - stonewall the omnipresent The Nutcracker soundtrack that plagues homes and cities (and even MRI cubicles) this time of year, and get over myself and all the shit-crap-bitch slap-vexation that accompanies me even when I'm smiling.


"SHORT"
Wouldn't it be great if we could make any long story short? Ummm, excuse me, but no verbosity jabs please. I've had enough short-range punches this season.

I may not be attracted to short men, short leashes, homemade film shorts, short shorts, or any kind of pant that cuts above the mid thigh, and I've had it with short-term memory. And through repetition, the word short itself is really starting to irk me.

But at this (hopefully short) stage of my life, I'll take a short day - a second that really passes as a second or an hour that is only 60 minutes. Reality is such a foreign concept to people like us. But I'm going for it, and I haven't even had a cocktail yet.

Maybe tomorrow, I'll be reborn immune to personal suffering, or better yet, TM. Somehow, I doubt that, and I'm sure those of you who are or are not sick do too. But it's fun to ponder, especially when the idea is ours and not some doctor affirming best-case-scenario-only's, which lead to worst-case-disappointment.

While I may trust my doctors more than myself when it comes to my treatment, I'd rather be disappointed by an evening of symbolic role playing than someone else's bullshit optimism.


FINAL TOAST
So here's to the self-made moment - a good moment in real time with realistic expectations. And here's to not being able to meet those expectations but trying. And here's to life sucking but rocking despite that. And here's to my mother, brother, Marci, other family, friends, coworkers, and strangers who may hopefully not ever know what a challenge it is to control one millisecond in time.

And, of course, here's to recovery, or rebirth, or the Winter Solstice, or whatever you want to call it. We all need it in our lives for some reason or another.

Just Another TM Monday...Ohhhwayo

This Mel update may be terribly boring for some, voyeuristically curious for others, or just an appreciated update of what is actually going on in my life for family & friends.

Any way, let me introduce to you:

Just Another TM Monday: 24 hours of a mostly typical Mel-day in annoyingly elaborate detail and occasionally missing moments that may have been forgotten or ommitted due to short-term memory, writer's license, or I was just too damn tired and lazy


AUTHOR's NOTE: This post is based on last Monday, but due to the ever-pressing responsibilities of work, plasmapharesis, and trying to be fabulous despite my TM, I didn't finish it until Thursday. And posting a Monday post on Thursday was just too anti-climactic, even for a person with a disease that removes that word, in most of its meaning, from their life.


12:00AM - 1:00AM

• Feelin' down, tired but abnormally frisky - like I've slept all day and I want to get out of the house and see the world and feel pretty kind of frisky.
  
• Attend Koresh Dance Company after party at Time with friend-professor-artist-ex-boyfriend Mat, despite wanting NOTHING to do with dance world.
  
• Enter - armed in my new Sorel snow boots, other winterly accouterments, and punk rock cane.
• See ex-husband for 1st time in 1 year. Flinch. Nod. Smile.
• Neuro-walk toward him; long-story short: he learned the day before of my TM.
  
• We reconcile. "Life is too short."
  
• Hold back tears while drinking screwdriver bought by ex-husband.
• Cane-"dance" to ex-husband's music, much of which is also on my Ipod. (He was the DJ)
• Prevail 3 minutes on two feet.
  
• Attempt seated chair dancing. (I have obviously lost any sense of pride.)
• Sustain 1 minute.
  
• Return to Screwdriver at bar.
• Reciprocal flirt (just a teensy subtle bit) with secretly unavailable man I have no interest in.
  
• Calm friends and strangers as they react to my bloody, mutilated sternum.
• Meet unavailable man's wife - stupid drunk, stupid happy, stupid cute.
  
• Cab ride home.

1:00AM-3:00AM

• Take night meds.
  
• Crash on couch to ubiquitous Law & Order playing on my new 32" flat screen.
• Wake up hungry. Hadn't eaten since noon Sunday.
• Shovel down 1/3 of what's leftover of 5-day old Thai leftovers and hope for best while watching info-mercial. Any result could be a positive. Maybe I'll actually go to the bathroom!
  

3:00AM-5:15AM

• Sleep in bed. Cuddle with cats.
• Wake up. Why?!

5:15AM-6:00AM

• Awake & doleful - in various kinds of full-body neruo & post-surgical pain.
  
• Attempt work on copy doc with ensuing deadline.
• Suffocate on self-inflicted stress and double vision.

6:00-8:30AM

• Sleep more.
  
• Daily alarm off. Uggh. Snooze. Uggh. Snooze. Up. (Note: "Up" in TM world is more of strategic slow-mo side roll, peel/push torso to sitting.)
  
• Lift self out of bed with support of cane.
• Neuropathy already overwhelming focus.
• Make coffee.
• Feeling relieved about reconciliation with ex, but agitated by pain.
• Feeling irritated by pain and fact that I "kind of" got "stood up" Saturday night. What man wouldn't at least want to take the opportunity to be sitting distance from a woman with four boobs and 5 nipples! A dream come true!
  
• Agitation and irritation turning to frustration and anger.
• Refocus - "remember Dr. Schwartzman's orders: none of this is good for TM."
  
• Listen to Ganesh meditation online.
  
• Lose focus and switch to another Web site before completion where I can spend money I don't have .
  
• Imagine myself not spending money. Yuck.
• Imagine myself meditating.
  
• Imagine alter, props. See dollar signs.
  
• Question: clothes, furniture, co-pays, job security, meditation? hmmmm.
  
• Priorities? Confused. Conflicted.
  
• Try to work on copy doc. Failure.
• Yikes. Have to be at Hahnemann for plasmapharesis treatment in 2o min.

8:30-8:50AM

• Wipe last night's stink off with bath wipe, e.g., "whore's bath."
• Skip face, smudge mascara under-eye lids into cats eyes. Wow. It works.
• Dress.
  
• Pack bag.
• Grab slice of bread and down orange juice. (I skimped on the pre-pharesis meal requirement; figured my late night "binge" counted for something.)
• Super-woman hobble to elevator.

8:50-9:10AM

• Wait for an f'ing cab. Is everyone afraid they'll be blown over by the wind in this city too?
• Put rest of bread in pocket. If I'm not making this appointment, I'm not forcing myself to eat.
• J.J., best doorman in philly, finally triumphs over the cab battle.
• Can't push front building door open against the wind. I am weaker than usual.
• Call plasmapharesis for 2nd time letting them know I'm on my way - strict 15 min. grace policy means no pp for Mel today.
• All is cool. Someone else's cancellation saves the plasmapharesis day. Pull bread crumbs out of pocket. Eat.
  

9:20-11:15AM

• Plasmapharesis.
• Hurts to feel bed against my skin.
• Fall asleep watching my blood swim out of my body, and wishing my final appeal against Aetna, which at this date is not looking good per my pro bono attorney Jennifer Jaff, comes through. When last appeal is over, I must write about more Jennifer and this case.
  
• Sleep through most of treatment, except when they wake me for calcium supplements. Lisa gives me the flavors I like - strawberry first, then orange.
• Take morning meds. (Plasmapharesis would have just heaved them out of my system).
  

11:30-1:00PM

• Rheumatologist appt. with Dr. Huppert, nicest Rheumie in Philadelphia.
• In and out of sleep in waiting room. He offers to take my coat and hang it for me. He's running 1 hour behind. Acceptable, considering how nice he is. Not acceptable considering I MUST get back to work (from home).
  
• Cortizone injection in left hip. This one hurts.
• Last injection in posterior hip still working.
• Doc: "See me in 2-4 weeks. Let's get an MRI of that hip."
• Me (in my head in 1 seconds time): "Great - more tests, more visits to Hahnemann, more time out of the office. ATAVAN?!"
  
• Me (out loud): "Thanks. Goodbye. Gotta go. Bye...Bye..."
  

1:00PM

• Home. What a frickin' mess.
  
• Get online. IM boss, "Honey, I'm home! And I'm working!" Really. I am.
  
• Take afternoon meds.
  
• Life Alert guy supposed to show up to install equipment. No show. No call. Or I just haven't figured out how to check my home phone voice mail.

1:50PM

• Kris from IG Living calls to check in. We chat about my case against Aetna, test results, and her two very inspiring boys who have autoimmune. I could talk to her for hours. I must write more about her another time. "Kris, I'd love to chat more, but I have to go. I have a 2PM work conference call.

2:05PM - 3:30PM

• Home phone rings. Work conference call for major deadline. Exchange pleasantries. Everyone's sick - with cold.
  
• Momentary feeling of superiority matched with typical Mel compassion: A. ) Have they ever heard me complain about my sickness at work? Don't think so. (But probably) B.) It sucks being sick and having to work. Hell, it just sucks being sick "period."
• Cell phone rings. Mute other phone. It's Jennifer...sounding concerned. Gotta go. Call you back in 90 min.
  
• Cognitive problems at extreme today; having trouble articulating my answers to bosses questions.
• Feel like a moron.
  
• Explain. Apologize. Repeat.
  
• Account Exec asks how many product pages I've finished writing.
• I lie. 50%.
• Additional changes to copy clarified - kind of.
  
• 3PMish: Get disconnected. Meeting still going.
  
• Call to get back on; IM co-workers to let them know I'm off call.
  
• No one calls me back.
  
• Self-doubt. Is my disease making me less important?
• Wait for call...work on copy doc. Need to get to 50% by tomorrow AM.
  
• Wait for call...work on copy doc.
  
• Wait for call.
• Give up. Move on.
  

3:30-4:00PM

• Call Jennifer. She's more animated than normal. Case against Aetna is looking hopeless, and this is our last chance. None of my docs keep good records. Expense of getting records rising. Gives me to do list. Put to do list in my Entourage.
  
• Get back to work.
• Overwhelmed. Exhausted from treatment. Ghosts of The Drake continue to poke, pinch, punch, squeeze my body head to toe.
  
• Call mom on cell. No answer. At work. No answer.
• Lie down on couch. It hugs me. Fall asleep.

7:30PM

• Wake up. Pain lessened.
• Call mom. We split Jennifer's to do list. Overextended, overwhelmed feeling lessened.

7:35PM - 1:47AM

• Write, write, write, write.
• First time since Sept that I feel remotely lucid. Clarity is energizing.
  
• Take short break to call friend John. Wanted to call him earlier, but who wants to talk to a depressed, tired, miserable Melanie? Not me.
• Take evening meds.
  
• Nearly make it to 50% of product pages, and some damn good commercial writing too. Good enough.
• Email copy doc to self.
• Take bedtime meds.
  

OK...time's up.

TM - Philly Style: Network Euphoria & Solo Depression

As I was limping through Saturday night pre-holiday packed streets of Philadelphia, I passed thousands of couples and groups of friends. Since I was alone, I could do as much wondering as my mind could handle. I wondered how they met, what attracted them to each other, what kept them together, who they were buying chocolates for, and what they had in common.

WARNING: I'M ABOUT TO DISGUISE MY OPINIONS AS GROSS GENERALIZATIONS
We choose our mates and friends based on similar interests. Lovers and friends don't need to have everything in common to build a relationship, but I bet the best ones possess something mutually unique that makes their bond work in both the short and long term.

When our lives are seriously altered, it doesn't have to mean that we can't still relate to our peeps or receive the same gifts of their presence in our lives as we always have. They have the best intentions in easing our pain and suffering, but when sympathy becomes the main force of our relationships, the word itself starts to snip into the fibers of the dialogue and interaction that once was so enticing to make us friends.

There's a reason why sympathy and empathy live so far apart in the dictionary, despite their complimentary roots. And while sympathy can be comforting in small doses on the right occasion from the right person (this requires profound intuition), it's also frequently uncomfortable and tiresome and ultimately places way too much emphasis on our illness, which we try so hard to forget.

Empathy takes us a lot further into understanding our own condition and it provides a platform from which to evolve from our situation. While there are occasions that the people in our lives can meet the definition of these two similar wor(l)ds, when one's "serious alteration" is a rare disease, it's equally as rare that this can happen.

ONE IN A MILLION
Before I had Transverse Myelitis (TM), I never entered a chat room, didn't have a Facebook profile, the only networks I belonged to were ones that furthered my career, and the only support group I ever attended was for one of those "serious alterations", which was the tragic death of my father when I was 18, and in my 6 weeks there I don't believe I said more than a few words.

Since my TM diagnosis in September, and the continuing revolt of my body and mind, connecting with other people with TM has become a mission. While recovering is my top priority, having a network of support is as important to that recovery as the treatment, meds, and rehab.

Considering there are only 1400 new cases diagnosed globally each year, finding those people would and did seem impossible. During the two weeks after my first hospitalization, I spent my waking hours (which, as a result of high-dose steroids were most of the 24 in a day) researching TM, seeking a local support group (there are NONE in Center City), and following up with my other friends with various serious illnesses that I had met in the hospital.

While I found two great online forums for TM that offered virtual support and education (see "TM, Neuro, SCI: Social Groups, Support Networks, and Chat Rooms" links in the right column), I was disheartened and moderately outraged that there was nothing local in such a major city.

Having a rare disease with no clear path or prognosis is terrifying, and even though TM manifests differently in most of us, only other TM'ers can truly understand the myriad emotions and and physical pain that accompanies it.

Despite the unsteadiness of my state, my activist spirit was still sturdy, and I started Transverse Myelitis Philadelphia, a networking group for locals with TM. We began with 2 members and today we have 10, 9 of which have TM. We had our first gathering tonight, 4 of us were there, all of whom had very different TM experiences, from total paralysis to mild numbness.

I was the only one with a cane, Jocelyn was the only one who had developed MS, John was the only one who went from paralysis to completing a triathlon, and Denise was the only one who had become completely paralyzed from the neck down within two hours but considers herself 90% recovered eight years later.

If you watched us interact, it was as though we had known each other forever. In fact, having TM feels like forever, so maybe that immediate connection was just a natural bridge from our own unique experiences. And all of us have engaged in jobs or side projects to advocate, fund raise, or find cures for TM.

It was invigorating, inspiring, and surprisingly moving to be in their presence at once. And although, I felt all of this, that's also when emotional Melanie emerged, precisely as I was in the bathroom releasing my neurogenic bladder. Who knew there was a pee-mind connection?

Perhaps it was just talking about it for two hours with total frankness and disclosure, but instead of coming home gleaming from the understated empathy that exists among fellow TM'ers and the sense that I made three great new friends, my pee-mind-emotional connection persisted.

A REACTION AS IMBALANCED AS THE ISRAELI-PALESTINIAN CONFLICT
I may have lost the activist tenacity of the old Melanie (I was too tired to attend today's WILPF Middle East Committee meeting, of which I'm a member), but I'm still allowed to throw some politics into my posts. It's my blog after all.

So here it is, my first video diary captured with iMovie, in all its sappiness, sadness, hopelessness, and irrationality. I should be ashamed and embarrassed to post this, but these emotional discrepancies are part of the TM process, at least as I have experienced it.



According to the article, Demoralization and Depression in Multiple Sclerosis and Transverse Myelitis, by Adam Kaplin, MD PhD, my depressive response is actually normal:

"The brain has numerous functions. It is not hard for people to understand that the brain controls nerves that wire our muscles and that when people have MS or TM, the muscles may not work as they should...People do have a difficult time understanding that there is a part of the brain that regulates our moods....

There are many conditions that will cause depression, but transverse myelitis and multiple sclerosis are the record holders. There are higher rates of clinical depression in TM and MS than in any other conditions. MS has the highest rates of depression ever described, and that is because this condition attacks the brain in a specific way, and that attack leads to depression.

You can view the entire presentation on which this article is based.