Ketamine Cam Day 2: with spills and special guests

Mois...coming down from ketamine...again.






ALSO, even though yesterday was the official Scatterneuries deadline, I'll extend it until Monday for those of you who are dying to take part in this brand new online game.



This one is boobalicious.

*****

UPDATE
7.16.10

With 2 weeks of plasmapharesis, followed by a nerve block surgery (link warning: video of actual procedure) of my left arm, and 2 days of ketamine boosters, I have not felt this good in a while. My pain is down to a 6, and I'm actually able to enjoy being awake, walking around, and I'm going to paint today for the first time since this last flare-up, which started over 2 months ago.

Unfortunately, my ketamine boosters will be further apart from now on because the drug can cause liver damage (and it's basic scheduling protocol), and if my LFTs are adversely effected, I can not get treatment for 6 months.

Since I've been receiving ketamine, the positive affects (if any) have lasted no longer than 1.5 weeks before they started to dwindle. This last month-long wait was excruciating. I don't know what to expect, or how I will handle, managing my pain with this longer break between infusions.

Normally, follow up boosters at this stage are every 3 months, however, we're going to try for every 2 and hope that my liver can take it. But since the nerve block worked, I'll probably be getting one every 3-4 weeks.

The good news is, the doc, Dr. Goldberg aka Dr. G, is super cool - like hip hipster in scrubs cool, the hospital in Camden, NJ is actually gorgeous (despite its location) and amazingly stylish for such an icky institution, and they have the best hand sanitizer I've ever used.

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.

Sickos. Glamour. Giving. Ain't that what it's all about...

You all know by now, I like to shop - online, in line, in tiny shops, and medium-sized shops - but not big corporate chain stores and malls - yikes - they give me the creeps and aren't so good for a gal sans immune system.

I'm currently going through plasmapharesis treatment - it brings out the "best" sicko in me - but makes life a danger because it removes every single antibody from my system, i.e., I am immune-less (don't you love made up words!), i.e.#2, as long as I'm receiving plasmapharesis, there isn't anything my body can do to fight off whatever popular germ floaters pass my fortress of hand sanitizer.

All of you are potential medical enemies. Since I believe that getting sepsis once is enough, I'm choosing to spend my disability dollars (what few are left after life's expenses) online.

Don't ask me how I find these pleasant little shops - as you know my memory has a 30-second limit - so when I find a fabulous virtual store, it's like stumbling into a "pleasure chest." Just like when I was a choreographer - it's my job to make it up and your job to remember it.


SO REMEMBER THIS...
Appropriately branded, Lavish Giving, this boutique's plush to posh array of unique, practical, or just plain pretty gifts for everyone from your boy toy to your pampered pet is for all of you gimps and givers.














The Ohio-based owner, Jane, is a gracious cancer survivor with a mission. In recognition of the value of medical research, when you spend $100 she donates 10% of that to the charity of your choice. Even you frugalistas will find this user-friendly site a breeze to navigate, and your cart will arrive gratefully to the $100 finish line before you know it - full with gifts for all, even yourself.


PS
If you have the urge to give the gift of giving to me, I'll gladly accept your philanthropy on behalf of all the worthy medical research charities. Just email me for my address, size, or favorite color, and I'd be happy to oblige. And although I'd love the $800 foldable bike, my neuro-body isn't quite ready to take on a two-wheeler, let a lone a tricycle, or a car.

False Alarms Are A Bitch (that's so not PC but f**k it)

For those of you that were planning on visiting or sending me cards and pricey gifts while I twiddled my time away at the hospital yet again, I'm sorry to disappoint you, but the prison sentence has been terminated.

At 10:45 AM, after numerous un-returned phone calls, I made my last and final call, where I must admit, I got a little bitchy. After all, I didn't know if I could drink my morning coffee, take my meds, have a sip of water, or eat anything (which with my appetite I could care less about, but it's the principle!).

As it turns out, my doc just temporarily forgot how stubbornly independent I am, and he wanted me admitted because I'm single and live alone. How's that for rubbing it in?!

The good news is my OUT-PATIENT surgery to re-implant my permacath and portacath is tomorrow, and I begin OUT-PATIENT plasmapharesis Thursday.

So you know where to find me for the next 3 weeks - either sleeping thru plasmapharesis on the apharesis floor, or sleeping on my couch after the plasmapharesis. For those of you that haven't experienced plasmapharesis or never heard of it, look it up. Just kidding.

Basically, it doesn't matter how big or strong you are, this amazing procedure knocks you the f**k out. And it leaves you stranded without an immune system, which if you're screwed up enough to need plasmapharesis, it usually means you're better off without your own immune system, because it's a bad, nasty, recalcitrant, serial killer of an immune system that must be discarded as biohazardous substance immediately and forever.

PS That's not me in the picture. And even though it may or may not be degrading, salacious, or inappropriate to some, I thought it would grab your attention. After all, it did mine. Think of it as a little gift from me to you for causing you any more worry than I already have. Don't thank me. I'm just, ya know, generous like dat.

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.

Back Home, Big News, Hallucinations & Hot Docs

A big hello to everyone. And a big thank you to those of you who tracked me via my mother's posts on Facebook.

You may be thinking I've abandoned Neuro Detour. I haven't. In fact, I'm ready to expand it's content. (More on this later.)

I haven't written in more than 1 month because I haven't been home for 5 weeks. A few days after my last post, I had my 2nd relapse in 1 month - head to toe pain...as though a semi truck was driving back and forth over my entire body and delirium (although I thought I was perfectly lucid) as well. Note: Don't try this at home.


FIRST...BIG BAD NEWS
On July 28, one day before my birthday and one week after my first relapse, I was officially diagnosed with multiple sclerosis (MS). While I knew that people with transverse myelitis (TM) have a 50% chance of developing this, I assumed if it would happen, it would take years.

At least, I don't have to worry about getting MS anymore.

NOW, BACK TO THE STORY
On Tuesday, August 3, I went to the ER by ambulance, my mother flew in immediately, and I honestly have no clue what happened between then and my first full hospitalized week. I was released Friday, August 21, but with conditions. I had to go back to Pittsburgh with my mother for 2 weeks of R&R.

Initially, the idea of this was more torture than comfort. I had just started seeing someone (yay!) and I was concerned that the extended absence would cause him to think "is this worth it?", "do I really want to date a neuro gimp", "she's hot and all, but there other hot chicks who aren't sick", and the list of self-degrading scenarios goes on.

But my real objection was that this was tangible proof that, at least for that time period, I was considered incapable of caring for myself, i.e., the dreaded burden of dependency.

I wanted to get out of that hospital and return to life as normal; 21/2 weeks of my extended birthday month were already murdered by this relapse.

MEMORIES...
Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 1995.

1995!

I have no idea why this is the year I returned to. My 1995 was as uneventful as any college sophomore. But there I was, staring into the blue eyes of my nurse, neurologist, and infectious disease doc, while my mother sat and watched them taking every effort to keep me from getting a stroke.

All that I recall from 8.3-8.21 is:
3 surgeries
2 days of plasmapharesis
sepsis
a crackhead stroke victim roommate who screamed "waaaaaaaa......ter" over and over again,
inability to stand or walk for a couple of days (hello bedpan!)
get well cards
my favorite roommate, Precious
the uncompromising pain
about 1/3 of my visitors (thank you!)
the preferred moniker switch from TM to MS
my mother flying and driving back and forth from Pittsburgh to Philadelphia
there are now nodules in my lungs (who knows what that means)
AND
the should-have-expected last day of hospitalization yearning to get the hell out of there but you-must-wait-to-be-released-and-receive-your-release-papers 4-hour wait

ON THE ROAD AGAIN...
When the 2-week R&R Pittsburgh sentence ended, I had mixed feelings about leaving. While my mother's stairs are a real bitch for a weak gimp like me, as they became less difficult to maneuver, they were actually a solid measure of my gradual improvement. But aside from a few flights of stairs, I experienced all the good that my hometown had to offer - most of it from the vantage point of my mother's 2nd floor balcony.

In Philly, I have a handful of great friends. In Pittsburgh, I have a history; I made my mark there through my dance company and arts outreach work; my brother, sister-in-law and my joyous nieces live there, as do many friends and relatives, including my resilient grandmother and my BFF/virtual doctor who I've known for my 34 years on this earth.

But Pittsburgh, with its hills and distinct neighborhoods, is not gimp-friendly. Philly is. (Though it should be better.)

So here I am. And here I'll stay, 6 blocks from my doctors and hospital - a distance I can walk on my best days.

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

We're Popular! Even Tho I'm a CVS Screamer.

YAY ME. YAY YOU. YAY US.

Neuro Detour has reached more than 3,000 visitors since I started this blog in October!

I've had other blogs...I still have other blogs, but not one of them has reached the popularity of this one. Being a neuro sicko means having lots of "Who would have thought" thoughts, but, who would have thought that being a neuro sicko would "make you friends and help you influence people"?

Thanks to everyone who reads, reacts, responds. I'm honored to have you has a reader. I'm honored if anything I write makes you take some action or understand this screwed up world we neuro-ites and disabled people live in.



SPEAKING OF UNDERSTANDING...

I have a confession to make.

Not only do I have occasional 'roid rage, I also experience hyperactive stimulus responses - intensified hearing, smelling, body reflexes. You name it, this Transverse Myelitis (TM) girl has it. And sometimes it's OUT OF CONTROL.

Example: The Latest and Greatest Incident
Yesterday in CVS, while picking up my meds (I'm a regular) after my last plasmapharesis treatment, I was gimping down Aisle 1 when a suited short man with paralegal (no offense paralegal readers) hair, came sprinting toward me. As he whisked by, I felt the wool of his suit brush against me. The wind of his mad dash nearly knocked me over.

Balance is not a neuro gimps specialty - even an ex-dancer neuro gimp.

Even though the only thing I wanted to do was get home, sink into my couch, take my anti-spasmodic meds, and crash, I stopped, standing my gimpy ground.

So, of course...

I said (not so politely):
Excuse me.

And he said, NOTHING.

So, as he grabbed his precious 1 gallon plastic bottle of mad cow-laced milk from the cooler, I turned and yelled the obvious:
Asshole.
(with equal emphasis on both syllables)

In his rush to return to line, he speed-walked past me with a vicious stare as though to say, how dare you yell Asshole in a crowded CVS. Well, his silent aggression pissed me off even more.

And I responded:
Didn't you see a woman with a cane standing here?

He spoke!:
Didn't you see the box that blocked my vision?

Com'on smarty pants, the box, which was a small "display" was behind me...you couldn't come up with a better, more logical, more "suited" response?

And, I, officially-licensed-cane-carrier (which I couldn't use as a weapon even in a non-post-plasmapharesis state), retorted:
I'm glad your life is so much more important than everyone else's.

And he squawked the only appropriate response:
Jeeeeezzzzzz.

No sir, Jesus does not help jerks with jobs and social responsibility blindness.

DEAR RESPONSIBLE READERS: THE DAMN MORAL

I hope you see this is as a sort of grown-up-gimp fable.

Although my actions, or rather reactions, may not have been...ummm...the most appropriate, I strongly believe they were warranted. After all, it is my duty as a gimp advocate to teach people about compassion for durable-medical-equipment-bearing-neurologically-impaired-immuno-compromised individuals.


I realized that by saying, "Didn't you see a woman with a cane standing here," I was taking responsibility for my people - my companions in this often-hellish-life we exist in and endure. This was not about ME. It was about the old lady who's unsteady on her feet, the sad jobless person who's lost in a head-lowered dreamworld of job-mourning, but especially gimps like me - glamour or non-glamour alike. Maybe I need to listen to (reading books is still a TM/encephalitis-induced challenge) Dale Carnegie, but...

I hereby condone and crown anyone who isn't afraid to yell ASSHOLE, at an asshole running down a narrow aisle in CVS's across the world.

Off you go...

Take control. Take action. Make the world a more compassionate land through malediction. Make people's lives who suck, rock.

Go for it!



PS
Please share your tales of curing through cussing here. Thanks!