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Nose Up Lifting Shaping Beauty Clip

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PS Picture added for your own enjoyment.

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.

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

Become A Glamour Gimp

NEW POST SERIES
This is a new series on my fave sites for sickos and non-sickos alike. Our lives may suck, but we must rock, and retail therapy, especially FREE or discounted retail therapy is great medicine. While it may not compare to oxycotin, it's more like apples and oranges, and one needs both the fiber and the vitamin C. Right?

I had to get this one out immediately, as ideeli is having a Vera Wang necklace giveaway (see pic to left).

And ideeli's not just for girls. They have men's giveaways and super deals too.




From Ideeli and Me:

Join me on ideeli, the first invitation-only shopping community.

Source: www.ideeli.com

You're invited to join ideeli, an invite-only shopping community where you get insider prices (up to 80% off) on luxury fashion, home and beauty brands. PLUS, ideeli has extraordinary weekly giveaways! Membership is free but you have to be invited to join- so join now.


PS The more of you that join, the more chances I have to win the Vera Wang necklace, so act quickly and then get your friends to join on your behalf. One of us deserves this beauty. Let's get this neuro detour on its path.

IVIg is On...& In My Main Vein: A Monthlyish Update

Maybe the recent increase of series-posts means that I'm thinking more "big picture." It could be timing - that my Transverse Myelitis (TM) and its multifaceted challenges have developed enough abyssal momentum to warrant a deeper look. Or, could it be that 4 months into my diagnosis and 5 months past my first symptom, TM is no longer as discomforting as a terribly matched accessory, but more like Rockports, an ugly but integral component of one's wardrobe (surely not mine; no offense to the Rockport wearers (my father was a dedicated Rockporter) but I turned left onto the Puma, Steve Madden Fix tennies, and knee-length ankle-supporting boots purchased from local, individually-owned businesses Head Start Shoes and Joan Shepp where everyone knows your name (and you can shop from their stellar collections online) on the fashion road)?

I honestly don't know. But I do know (and own) those funky-comfy-velcro-buckling-neuro-friendly black boots pictured above, and I gladly laud them. (They're on sale for $49 right now. Be sure to tell them Melanie sent you.)

I'm still not seeing any pictures - big and certainly not small - clearly, but I'm hoping this new leaning towards the big and the long-term is a positive sign that I'm not so overwhelmed by my shitty new life that I'm occasionally thinking "future", or that I'm just thinking period. Or, if I examine my past-life as a choreographer and dancer, which 9 times out of 10 involved (dare I say) ambitious, ongoing or long-term performance, residency, and community projects, means I'm coming back into myself.

I'd also like to believe that this lean, is a subconsciously mind-brimming synonym for incline, i.e., a sign from the Transverse Myelitis gods that I'm due to be wearing high heels again soon (the fruition of the magic wonders of IVIg?). Ohhhh, to feel my toes squished into a pointy, little toe-hand with a mighty grip, to hear the click-clack-clank-clank of my own walk (epiphany, high heels want to be heard!...and so do I), to make the necessary pelvic swivel offering to the line-embellishing, lusty fellows that kiss my feet better than any lover - well that would simply be exquisite, I'm thinking big O divine. (Phew...I think I just got lost in my own fantasy.)

But nay, I'll stick to my baby steps - both literally and figuratively. Not becaue I'm no longer an ambitious GHB (godless heathen bastard), but because I value my health, I'm sick and f***ing tired of disappointment, and the last thing I need right now is a concussive, face-disfiguring fall.

TANGENT
--But what's this have to do with IVIg?
Nothing!
--What?!
I mean Everything! But also, nothing, nada, niets...
--So give it it's own damn post - in plain old ENGLISH.
I don't feel like it. And besides, I can make it work. I can pull it together. I can pull myself together. I'm on IVIg.
--We don't care about your feelings, but we do care about your feelings, but not enough to care more about your feelings than your recovery, and besides this is a world about practicality (which you are so obviously not), and we care deeply, oh so deeply, about practicality, and you're simply and irrecoverably impractical.
Oh.

(Sidebar on the Above Sidebar: internal monologue exposed; perhaps better left internal)

LET'S SET THE MOOD
I'm in an I-DON'T-CARE-NON-SEQUITUR-OVER-EXPLAINING-MOOD that I can't and won't explain in its entirety for very selfish reasons, which include saving my ass (not my present ass but my future ass); it's the middle of the night; and after my bad-good-night's sleep (bad = 1.5 hours; good - I awoke at a decent hour to have a very deserved glass of wine and I'm wide awake anyway...as usual).

So, when in doubt (and trust me, there's no doubt here) or in sidebar-mode, blame it on Aetna. Which, in this case, I have every right to, but which also in this case, I can't and won't explain for future ass-saving purposes. I hope you can forgive me on this one point of privacy (POP). I'll try not to do it again.

Speaking of Aetna and ass-breaking-saving, this is the perfect segueway to the more straightforward part of the first installment of IVIg is On...& In My Main Vein: A Monthly Update.
(Sidebar: Personally and contradictory to what I may have written moments ago, I wouldn't discount any of the above verbal drama as anything less than an integral part of this first installment)


IVIg HOME TREATMENT SERIES 1: 1.15.09-1.19.09
The update...finally
Today, or yesterday, depending upon how you view your schedule, I completed my first 5-day, much-fought-for round of IVIg miracle treatment. (Thank you Jennifer Jaff/Advocacy for Patients with Chronic Illness, Inc. and Kris McFalls/I.G. Living.) And according to the Aetna settlment (as I currently understand it and assuming I continue to have Aetna insurance), I can receive as many IVIg treatments whenever, however, and wherever I need them for the rest of my life.

Being home-bound is no fun, but it certainly beats prison, I mean errrrr the hospital, which is where, as an in-patient, I received my very first and more intensive round of IVIg treatment.

But, as a professional rule-breaker, I did exit my lovely quarters on 2, perhaps 3 occasions, and I did on 1, or perhaps 2 or 3 evenings, have 1.3 glasses of wine, instead of my prescribed 1 max.

Next month, I promise I will try to keep a better log of the ins and outs, ups and downs, of each day, but for this installment, I've already said plenty, so I feel no guilt. MOTHER, hear that?, I feel no guilt (It's a Jew thang).

The Log
Day 0, which really seemed like days 0 minus 20 to 1:

• Due to the last minute decision by Aetna to overturn their 4-time denial of treatment, and the fast progression of my TM (I have been losing my vision since late December), and misinformation, and scripts faxed to the wrong pharmacy, and, and, and, my mother and I took matters into my our own hands, contacted the Aetna pharmacy and their mothers, brothers, and cousins 3rd removed.
• An order for the IVIg meds and supplies was taken, noted, doubled-noted, recorded, and over-nighted with strict refrigeration instructions, or you'll be liable for this very very very expensive medication threat.
• Helen, from the Aetna pharmacy, was so nice, she almost makes me feel badly for bashing Aetna, but Aetna would have to employ 1,000,000 Helen's before that happened.
• Although we weren't assigned an infusion agency yet, Helen promised we'd have one in time for the meds arrival.
• By the end of the day, Helen found me a home with my future infusers, Infusion Nurse Specialists, of whom I have too many comments to maintain in a bullet point:
  

I must EXULT Infusion Nurse Specialists (INS) and its nurses that administer my treatment. They're so beyond excellent, they apparently don't even need a Website (Theresa: (the company's owner), Let's talk), and I was so pleased with them that I wrote my first Yahoo review. So, if you want to know how much I LOVE my infusers, or if you're looking for (what I assume to be) the best in the biz for your own infusions in the greater Philadelphia, New Jersey region, read my short and oh so sweet review.

• Lastly, I called William, my cleaning, driving, and package transporting helper, to do a quick sparkle-inducing job to my apartment, during which, I slept. It was a long day.
  

Day 1, Thursday:

• My dear friend John, knowing I was nervous, as well as excited, offered his company, which I graciously accepted.
  
• The meds, which were promised to arrive by noon, came at 9:45AM in four large and heavy boxes. How on earth does Aetna expect a sick person to transport these boxes to your apartment? All I can say is, Thank You John.
• Due to the last minute-ness of this week, Theresa, INS's owner, had to squeeze me in. And since the colossal package arrived so early, she did too - around 11AM - her own coffee in hand (of course I demanded she let me make a fresh pot of La Colombe), huge smile, and ready to get to business...which on day 1 is a lot of business.
• This business included: separating and organizing all of the meds (which were in my refrigerator, the supplies, including an EpiPen, as well as a sterilized city of gauze, pumps, mixers, bags, needles, BIG needles, tape, an IV pole, some devices (which if I lose or die and someone else loses, Aetna will hold us financially responsible), and making sure I took my pre-meds (Tylenol and Benadryl), and felt totally comfort.
• A side-bar about comfort: At this point, comfort is not my concern. Healing is. Pain is irrelevant. By now, my tolerance is so high I could be the next MVP...except for the fact that I'm physically and visually challenged.
• Aside from the quick and thick prick moment of accessing my port, the procedure was pain-free.
• And I wouldn't have known otherwise because I slept throughout it...and into the evening...and through the night, until I awoke at 4:30AM.
• Other than a hell of a lot of sleep, no noticeable changes yet.
• End-time: Unknown
  

Day 2, Friday:

• Nurse: Tina
• Arrival Time: 10:30ish
• Company: None
• Tina & I had so much to talk about - energy, positivity, relationships, books, etc., it was a cinch to stay awake the entire time.
• End Time: 3ish
• Slept after she left for 3 hours.
• Slept 2 more hours from 7-9PM.
  
• Change: None. Still thrilled.

Day 3, Saturday:

• Nurse: Theresa
• Arrival Time: 10AMish
• Company: John (for a couple hours)
  
• Meds adjustment: 1/2 Benadryl; Goal: decrease exhaustion from treatment and allow me to enjoy my plans for the day
  
• Result: I enjoyed my plans for the day.
• End-time: 1PMish
  
• Sleep Follow Up: 3o min.
• Lunch Follow-Up: Yes! 2PMish with Girlfriend Amy from NYC and friend/Boss-man Stevie D at Monks.
• Day-time Appetite: Yes! First time in 4 months. Hear dietitian's voice in my head: you need protein for healing and ate the entire burger (sans bun).
• Sleep: 4:10 - 7:12PM until company knocks to watch the Steelers. Congrats Steelers.
• Improvements: Tooooooooo personal to discuss in my current mood, but let me just say. Wow, what a relief.

I'm too tired...
(a side effect of IVIg) to finish this post in detail (it's 5:50AM now and I started at 2:45), and there's not much more to report.

But I must acknowledge nurse Mark, who offered great company, sound advice, safety modifications to my apartment, and put the wheels on my new plastic filing cabinet on day 4, and Tina, who was so sweet and comforting as she arrived on day 5 to a very, very teary-eyed and shocked me (again, no details for future-ass-saving purposes).

Final Results:

Measurable Changes

• A few moments of relief of this and that and the other.
  
• Nothing has stuck yet, EXCEPT:
• Minimal increase in strength in my right arm AND
  
• the unmentionable, which both should be considered to be at the same level as the moon and mankind analogy.
• Possibly, a slight increase in appetite. Time will tell.
• The ugly port access is replaced with a puffy bandage for the day.
  
• The Steelers are going to the Superbowl.
• Obama is being inaugurated.

Pictured Above: Accessed portacath (not mine)

To Come

• I would request each of my nurses again.
• I have 3 weeks of access-to-my-port-so-visible-people-ask-questions freedom.
• It's also possible that improvements will continue between treatments.
  
• I'm looking forward to reporting more improvements next month.

Good morning or good night, Melanie

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.

Friday Night Fire & the 10 Distractions

THE BACK, BACK SOMEWHAT TANGENTIAL STORY
In my family, when the goin’ gets tough, the tough eat Peanut M&M®s. Look in our freezers, and you’ll find at least one, but more likely 2-3 super-sized bags of M&Ms, as well as Vodka. In fact, my freezer is composed of:

• 1 nearly empty bag of Dark Chocolate Peanut M&Ms
• 1 nearly empty 1.5 liter bottle of Pinnacle Vodka - Classic
  
• 1 half-empty bottle of Smirnoff® Triple Distilled Raspberry Vodka
  
• 1 half-empty bottle of Smirnoff Triple Distilled Passion Vodka (this makes the best and cheapest Screwdriver on this planet; I recommend 4:3 Vodka/OJ)
• 1 3/4-full bottle of Absolut® Citron (Fun Fact: Absolut has its own fashion line)
  
• 5 multi-colored, multi-shaped mini trays of ice cubes in the shapes of hearts, stars, triangles, wine bottles, and plus signs (While adorable (the hearts are my favorite), I wouldn't recommend these for people with neuro or rheumatologic disorders.)
  
• 1 unopened 4-pack of Gardenburgers®
• 1 expired package of lox
• 1 freezer travel bag of single-portion packaged meatloaf that my mother made my brother bring with him on his last visit
  

We are neither overeaters nor drunks (well, at least the family members I'm referring to), but we do know there are novelties that make life more agreeable, even festive, and often, those are the same items that grant condolence and clemency from distress.

I wouldn’t be surprised if we’ve kept Mars Inc. and myriad vodka companies in the black through these harsh economic times.

While peanut M&Ms and a Screwdriver work wonders on emotional stress, these treats aren't quite potent enough to put out the relentless fire in my body. Nor are the 30+ pills I take every day, or the vampiric tri-weekly plasmapharesis treatments, both of which have been prescribed to do precisely that, among other wizardly healing.


FIRE STARTER
The fire in my legs—and arms, and neck, and torso, and face—is hot pill-sized bubbles of exploding cherry bombs and muskets that burst like popcorn on the stove, a nuked porcupine, and Mozart's Die Entführung aus dem Serail from my bones to my skin. It’s relentless as Greenpeace volunteers on 15th Street, ubiquitous as Law & Order and its multiple incarnations on cable, and distracting as a new relationship (but that delivers an entirely inverse tingle).

Incontinence can’t extinguish it. A hot bath is a no no. Gabapentin may diminish it, but the alarms are still blaring. Tramadol swilled with a glass of wine can occasionally do the trick, but it takes a lot of follow-through, and too much alcohol is bad (but oh so good) for a vertically-challenged disabled girl on steroids and a narcotics rainbow.

Unless we’re doctors, anything that transpires inside our bodies, is usually impalpable. As a dancer, I spent my career coercing a deep mind-body connection. And as much as I experienced that, it doesn’t make a damn difference now.

Half of my body is numb. My mind doesn’t know my anatomy exists, cold or heat don’t care if it touches my skin, my dangling earrings mourn they perceived loss of their mate, and the air that once danced against body is just distance between me and where I need to get to next.

And despite all this lack of feeling, I feel the fire. And I feel frustrated and exhausted and limited. I’m supposed to be getting better. I’m supposed to be the queen of the dance floor. I’m supposed to be happy, charming, intelligent, sexy, flirtatious, and a joy to be around. But I’m on fire and there’s nothing sensual or flashy about it.


BLAZING THROUGH
So how does one deal with the pain and exhaustion of Transverse Myelitis (TM), and its blood-plasma-life-force-sucking treatments and mind-altering drug menu?

Obviously, the way I phrased this question, although grammatically correct, is pretty damn stupid. Everyone deals with pain, suffering, discontent, and disappointment differently.

I’m trying to maximize the healing components of my new mantra, My Life Sucks, but I Rock, a somewhat contemporary meditational approach to pain and suffering. Although it’s a great ego aid, which is a sanity necessary for most with a chronic or debilitating disease, especially one that is outwardly visible, its vessel for healing isn’t bountiful enough to hold all the fire extinguishers in Pennsylvania. And it certainly can’t hold a muscular, grease-covered fireman with the strength to sweep me off my feet, vacuum my apartment, assemble my new furniture, or screw me mindless until I'm blissfully numb.

While there isn’t any sexual healing happening in my apartment, I have found distraction to be the best therapy for pain management and its emotional side effects, and it comes in many human and non-human, and active and passive forms.

There are many distractions I have found that work, and I’ll address all of them eventually. But in this post, I’m talking about Friday Night Distractional Healing after a 5AM-8PM work-treat-organize-get-on-with-it day comprised of plasmapharesis, somewhat deserved angry text messages and emails, fighting Aetna, work, work, work, my first and humbling Life Alert installment, wearing the ugly and way too big bracelet that goes with it, a 5:30 therapy appointment, and assembling the very cool and on sale tree candle holder, only to find that the glass votives were broken.


FRIDAY NIGHT FIREMAN TO THE RESCUE – PART I: PARTY TIME?
Fantasies aside, my Friday night fireman, came in the guise of an invitation from two friends (that means fireMEN!) to a holiday work party at one of the top landscape architecture firms in the country.

SCENE:
As they skulk along with the hoards of traffic along the Schuylkill express way, firemen, Mat and Jesse, run out of work talk and decide to call the sick, disabled, moody, frequently tired, yet occasionally charming and glamorous Melanie. Not knowing what to expect from their drive or their philanthropic phone call, they take turns staring out into traffic and back and forth at each other, while stealing potluck cookies from the Tupperware in the back seat.

ACTION:
Firemen dial, while swallowing the last bite of a chocolate cookie:

“We’re going to a party, not sure what to expect. We’re stuck in traffic, but we could pick you up in 30.”

ACTION:
Dull, tired, unshowered, undressed Melanie responded:

“Sounds like fun, but I had treatment today, and I should really take it easy, plus my cognitive abilities are on the demise, I don’t think I’ll be much fun to be around.”

ACTION:
And the firemen said:

“It might be boring, anyway.”

ACTION:
Then recently-former-good-time Melanie said, waffling on her lame evening forecast, but still certain it was the best choice and she wouldn’t follow through on her suggestion:

“Why don’t you go, call me when you get there, and if it’s not boring, I’ll grab a cab and meet you.”

ACTION:
As she imagined her single-woman evening itinerary of fire-bound legs attached to her couch and tremoring fingers stuck to her remote, she recalled the discussion she had just one hour ago with her therapist about her lack of single friends and touch and human interaction, and how having more of these things in her life might make living with TM a little easier, she saw a golden flash of young, hot architects dressed in tight black jeans, with equally tight asses and pretty faces prancing before her, and she said with understated appreciation:

“Alright, I’ll come, I can always grab a cab home. How long do I have to make myself beautiful?”

~not quite fin~

Going to a party is like getting married. You gotta look your best and there’s always a way out. And fortunately, the way out generally isn’t as painful or arduous as divorce.

Luckily, I have discovered and purchased Cinderella beauty products and a wardrobe just for these occasions. They couldn’t have saved my marriage, but they do make it possible for a disabled, disfigured, chronically sick and tired woman, such as myself, to look and smell good as the occasion required.


THE 10 DISTRACTIONS
We arrived at the party, and although I was still on fire in a bad way, I felt hot in a good way. I was wearing my latest purchase from Joan Shepp (a luscious dress that had material gentle enough and strategically placed enough to almost cover both of my extruding catheters). In preparation, I had loaded on the Nars Laguna/Orgasm bronzer duo so I had a deceivingly healthy glow, and weighted my wrist with enough bracelets to cover the hospital bands.

To our surprise, the party was bangin’—rife with hip and happening people of all ages, numerous and beautifully laid out food stations, music that could even make a frozen shoulder dance, and free booze.

TM or no TM, I know how important human interaction is to my quality of life. But large crowds make me uncomfortable. There’s the overstimulation (people with TM have hyper-reflexes and responses), the fear of getting knocked over, and public incontinence, just to name a few.


Distraction 1:
Open Bar

This was a large crowd, but one gabapentin and two glasses of savingon blanc later, and I was prepped to navigate its labyrinthine layout and all the beautiful and friendly-faced people.

Distraction 2:
Get cerebral

I often wonder what people are thinking when they smile at me and my various props. I’ll get into more detail about this topic in a future post. But for tonight, it gave me the opportunity to escape the dizzying lights and get into my head.

Distraction 3:
Beauty

Hot guy walks by, and then another, and then another…but I’ve set my sights on one. (Note: this may be counter-sexism, but eye candy is still candy, and I believe I deserve a little extra candy for now.)

Distraction 4:
Small Talk

Alice, a very effective small-talker, introduces herself as a wife of someone who works at the firm. I introduce myself as an ex-girlfriend of someone who used to work at the firm. I silently pat myself on my back for my wit. We laugh and move on.

Distraction 5:
Genuine Conversation

Tell Mat about hot guy #1. He says, really? I say, yes. He says, what are you going to do about it? I say, posed as a statement, not a question, why don’t you introduce yourself to him and then, of course, him to me. He says with resolute reluctance, we’ll see.

We look at the spread of food before us, and despite my lack of appetite, I eat something unidentifiable in the dim lights and appreciate the texture in my mouth. I prop myself on someone’s workstation to rest my legs and wonder why no one is dancing.

Distraction 6:
Meet & Greet

Meet Alyssa and Frank—the most adorable and friendly married couple in Eastern Pennsylvania.

Alyssa too wonders, although out loud, why is no one dancing? I want to dance. She sees my cane for the first time and apologizes for what she considers to be a blunder. There’s such a thing as cane-dancing, I say responding to the fear on her face, but the music has gone downhill, a couple generations and not the musically prolific ones, so we agree to wait for the next good song.

Distraction 7:
Hot guy #1 in Close Proximity

Alyssa says he is the sweetest guy in the world with the cutest accent ever. I ask, would he be interested in a woman with a badass cane? Superficial, I know. But presentation is where these things begin.* She looks me up and down with total sincerity and compassion. Yes, she says.

Courage restored.

Alyssa introduces us. We all chat. I try to hide my cane behind me. Good music returns. Alyssa, Frank, and I take off to fill the void of an empty dance floor bitterly juxtaosed against flawless hip-gyrating music. Hot guy #1 says, I’ll join you later.

Distraction 8:
Bonding

Alyssa and I have bonded en route to the makeshift dance floor. We agree to stay in touch. We agree that we need more friends with joy and spirit. Basically, we agree.

Distraction 9:
Dancing

I know I shouldn’t. I know I will spend Saturday in bed and in pain. I know I can't tear up the dance floor like the old Melanie could. But, I’m feeling the music and forgetting the fire, and it feels so good to move my body.

I don’t feel the air against my skin, yet sound waves still reach my joints and my pelvis is making its mark, even if my feet aren’t’ burning a whole in the dance floor.

Distraction 9:
The Stare

I feel the music, but I also feel the people watching me, thinking, oh look at that disabled woman dancing. How sweet?

But then I realize, I still have more tenacity than the fully-abled dancers. So maybe they’re thinking, what the f*ck is wrong with me? Why aren’t I taking more risks. Why aren’t I checking my baggage at the door? Why aren’t I going for it?

Who knows. Who cares. At this point, I’m back into my private dance world, and more and more people are joining in.

Distraction 10:
Diseased Body Realizes its Limits

I got so lost in feeling human—in the interaction of dancing with new friends and strangers, the possibility of hot guy #1 finding my still-decent-yet-unknown-to-the unknown-eye-limited moves enticing, of the fan blowing the layers of my dress into its own dance—that I danced too long and too hard and too damn good.

And now I cannot hold myself up. Now I need help. I hate needing help.


FRIDAY NIGHT FIREMAN TO THE RESCUE – PART II: WITCHING HOUR
This is where the Cinderella story ends. And it’s actually midnight too.

I grabbed onto my fireman, asked him to hold me up and keep me from stumbling, get me through the crowd and the 300 yards to the exit to save my dignity and my ass or head from another bad fall.

As he walked me outside to get a cab home, I remembered what I had said to him last week: I'm not going dancing again until I get better. The pain isn't worth the joy.

I reneged on my promise to myself, and I’m glad I did.

The next day, the results will be a return to fire and other pains and unpleasant distractions. But tonight, I got out of my home, out of my body, out of my mind, and I extinguished the fire in my body by putting myself into a situation that works.

Human interaction distraction, even if it lasts only for a few hours, is comprised of many moments. And when you have TM or any chronic disease, your life is moment to moment. To have the opportunity to sew so many of those moments into one seamless evening is priceless.

And when I got home, I ate a few peanut M&Ms, took my night meds, fell into my bed, cuddled with my cats, and fell asleep, proud of myself and looking forward to the next opportunity to barter a day of amplified pain for a few hours of feeling like the Melanie I used to know.

~fin...for now~

*"Weakness or other dysfunction may lead to changes in self-esteem and self-image that affect sexual performance. Both an individual with neurologic dysfunction and/or the partner may perceive that disability makes the person with TM less attractive or less masculine or feminine."
From: Issues of Sexuality Surrounding TM by Joanne Lynn, MD and Leslie Moore, RN

My Life Sucks But I Rock...Because There Are So Many Things I Can Be Thankful For

A Holiday Inspired Post

Note:
This is the 2nd installment of a new series inspired by my brother (see the inaugural descriptive post). Considering the season, despite the false pretenses under which we celebrate, and since I slept through Thanksgiving dinner (I was physically and emotionally exhausted from my first trip since getting transverse myelitis (TM)), I felt it appropriate to make the first official "My Life Sucks But I Rock"-dedicated post centered around thankfulness.

Although this is a numbered list, it DOES NOT represent any particular hierarchy. Think: poetic license.



Things that I am Most Thankful for Today
11.29.08

1. Couches that hug
2. Sleep: because forgetting is not a medical side effect
   
3. My Mother: because there are too many reasons to list here
4. Klonipin, Tramadol, Gabapentin, and Oxycodone
   
5. My Brother: because he is teeming with surprises and could make a man hanging off a ledge of an 80 story building laugh
6. Kindness: because it creates warmth beyond its own vicinity
7. Frozen dinners and elevators
8. My Aunt Marci: because she is full of contradictions, divine, will always be there in person when you need her, and drinks as much if not more wine than I do
9. Airplanes
   
10. Family: because I believe in some way I can count on them, even if I can't
11. Friends who call every day even tho they know the phone sometimes annoys me and I won't answer or talk long. But they really know their calls make me feel safe, loved, inspired, and less alone
12. Men that hit on me
13. Ex-boyfriends who become friends
    
14. My job
15. My supervisor, Steve Dimeo: because he is kind, ab fab hilarious, can do accents, sings karaoke, is on my side, and will hopefully fall madly and mutually in love with one of my best friends, bringing her to Philadelphia to live near me forever and ever
    
16. Low-cut, v-neck tank tops and cardigans...because everything that touches my portacath feels like anger
17. People who offer assistance because they know I am too embarrassed or proud (still need to figure that one out with my therapist) to ask for it
18. People who don't handle me like a helpless gimp...especially in public
19. The Internet
    
20. Dr. Schwartman: because he does everything he can to heal me while fighting the system that's denying treatment. And because he swears "we'll get you better and married."
    
21. Soft robes and pink slippers
22. Children: because their love is unhindered
23. Hope, even when it is a child playing hide and go seek
24. Magee Rehabilitation: a place that gives me hope
    
25. The realization that healers come in all types, professions, and visual representations
26. Hypnotists...I WILL quite smoking this month
    
27. Social networking sites: because you can find a mutually-rare-experience-virtual-and/or-in-person home of support
28. Spell check
29. The chance opportunity to see my ex-husband's three children and tell them I still care about them and always will
    
30. Gifts
31. December 17 - the date I go to The Transverse Myelitis Center at Johns Hopkins in Baltimore for my appointment with Dr. Pardo-Villamizar
32. Enlightenment - even when it lives in clouds...it will rain eventually
    
33. Knowing that Judy has left for Germany where she is about to go into a 2-week ketamine coma that could liberate her from RSD
34. Cute tennies - with or without platform heels
35. Irony
    
36. Everyone who moved all of my belonging up 9 stories into my new apartment while I watched and felt sorry for myself for being helpless
37. Friends who don't get too terribly annoyed when I feel sorry for myself
    
38. Soothing touch...even if its only from my mother for now
39. Sephora product samples
40. Sana at/& Joan Shepp: because I get retail therapy, friendship, and clothes that make me look so much better than I feel
41. Butt-lifting, thigh-flattering, tight jeans (I will always be thankful for this)
42. Delivery
43. Tall boots with zippers
44. Small gatherings with good friends and good wine
45. My new 32" flat screen TV
46. Smiles
    
47. The fact that it could be so much worse
    

Thanks Pharma, Biotech, and the Holy Spirit for Percoset

I'm tired. Really, really tired.

Not just because it's 1:57AM, I took an Oxycodone (generic for Percoset) 2 hours ago, I woke up at 6AM to meet a 1:30 work (extended) deadline...that I missed...by 4 minutes, I cried for three hours straight...at home and in public...for rational and irrational reasons, I spent my day in post-operative pain, I spent my evening in transverse myelitis full-body pain, I've been waiting three days for my next IV Ig treatment that Aetna insurance has denied twice in one week, I had to rush to the surgeon's office because another doctor told me my port looked infected, I'm mentally preparing to move tomorrow, I have $9 in my only bank account, I got out of a taxi mid-traffic at S Broad & S Penn Square and walked the rest of the way home because he pissed me off for being an idiot, or because I'm a whining, moaning, twinging, irritable, angry, tremoring, frustrated, spasming, urinating-challenged, weak-bodied, weak-spirited, weak-minded disabled woman with a moody disease that entered my life two months ago, and as its name suggest, thrashed what I knew to be my way of living into disembodied fractions.

But as I discussed with my brother on the phone tonight, sometimes life just sucks, and right now it sucks--and not just for me. Yet as I am in a somewhat deservedly self-involved state, I'm not even going to acknowledge the various levels of suckiness of so many other people's lives.

Other than the inanely funny jokes I can' remember and one of the most mutually honest and sincere talks I've ever had with my brother, this is the most important part of the conversation:

Even when life sucks, we (I) can still be a frickin' fantastic person. Maybe not in all our usual glorious ways, but there must still be 2 or 3 totally self-centered traits, thoughts, or actions that can make us say to ourselves, "Life sucks, but I still rock."

So, even if no one agrees with me on the following points....

My life sucks, but I still rock because:

1. Even though I haven't been allowed to bathe for two days, I don't stink and my hair looks just-got-laid sexy.
2. I stiffed the idiot cab driver who tried to rip me off.
3. I care enough abut my job, my lifestyle, and my future to cry because I'm direly afraid of losing it.

Off for a Hospital Quicky

It's 5:14 AM. I want coffee. I want water...very cold water. I want cigarettes.

I should be...
taking a (lukewarm) shower, brushing my teeth, and applying just enough makeup to feel attractive. I should be getting ready to be outside my building in 25 minutes to catch a cab to Hahnemann Hospital--for my second port surgery this month (the first was a perma cath, this is for some kind of portacath).

I'm anticipating...
the cute, but clearly married nurse, will be waiting to prep me for
surgery. Or, Sharon, the nice forty-something nurse who calmed me pre-surgery last time when the idea of all this loss of self-identity overwhelmed me in a fluorescent room full of strangers waiting or recovering from more serious surgeries.

I'm wishing...
they won't make the same mistake twice (what a hospital staff person make a mistake twice--never!) and give me ketamine (yes to the horse tranquilizer, no to the Special K) for my anaesthesia. I'm hoping I don't wake from surgery in violent, lawless, yet strangely conscientious hysterics.

I'm wondering...
if they'll give me a script for good pain pills. And, how many men over the next year will stare at my chest (I assume that's where they're putting it--no one has told me anything) and not notice I have breasts beneath my pot?

It's 5:30AM now. I have 15 minutes to get out the door. There's nothing worse than a tardy sick person.

I am stating the obvious by saying I'm procrastinating, but this is not because I'm scared, or because I'm about to go to the hospital. This is because I'd rather be writing, dancing in elevators, and working than being sick.

Portacath Photo Credit:
Portacath from Wikipedia,
originally uploaded by penmachine.

The Good, The Bad, and The F------ng Sucks

Disclaimer: Poetics and pretty phrases are not on my top list of priorities this morning. Some of you may have remembered my "typo" in the last update. I stared at that word ("aloud") for minutes and new it wasn't right, but the synapses just weren't firing enough to make the connection. Expect more of those today. My editor has been arrested for protesting McCain's liberal subject/object mis-swapping of me/I.


Writing my first Mel-has-Transverse Myelitis-Update-to-Friends-and-Family last week had therapeutic effects. On Tuesday, I was almost strong enough, neurologically lucid enough, and pain-free enough to walk without my cane.

Shoulda, woulda, coulda...followed up with another update sooner.

The Good Day-Bay Day Blues
The drawback of a "good day" is that the next "bad day" or even "not-so-good-as-yesterday's-kind-of-good-day" bears, not only, the misfortune of corporeal crap but it also launches an emotional spar against hope. In other words, It's been a rough week and I feel like shit to the bone, or I guess in my case "spinal column" would be more appropriate. So, please forgive any undertones of doom and destruction, and indulge my use of profanity. Swearing--like red wine, yoga, oatmeal baths, ambien, the sun, the Sunday times, and tall-dark-handsomes in tight jeans--has healing qualities.

Since Good Tuesday, the days have rolled into Not So Good Wednesday to This F*ing Sucks Friday. My transverse myelitis (TM) has become a recalcitrant puppy, sans cute mucous eyes and dog breath kisses. No, my TM is not house trained either.

I know...enough with the dog metaphor, get to the point Melanie. (Addressing myself in the 3rd person is not a registered side effect of TM.)


The Deal
The steroid treatment is not working. My old symptoms are getting worse and my new symptoms are getting stranger. This includes:

• increased difficulty walking and speaking
• occasional partial paralysis
  
• blurry vision
• worsening short-term memory
• bladder problems
• spasticity
• tremors
• parathesis (numbness)
  
• no appetite
• pain
  

Dr. Schwartzmann, my affable neurologist, has upped my pain meds and is readmitting me to the hospital. On Tuesday, I start plasmapharesis (a total plasma transfusion) and IV Ig (immunoglobulosomething-or-other for the immune system). The goal, as I understand it, is to give me all new antibodies that will not attack my immune system, enabling the recovery process to begin.

I'll be in the hospital for up to 2 weeks, and then I believe it's a week of bed rest.

Mom is flying in this Thursday-Monday. And, because my aunt Marci has pined for loquacious Leo's (my jr. cat) early morning face rubs since her last visit, she'll come (hopefully with contraband and sexy pajamas so I can seduce a cute doctor while rockin' a buzz) the following Thursday and stay until I'm released. She's also promised not to bring the movie, Beaches. Phew.


The Moderately Forced Optimism
I can't say it enough. I have an AMAZING family (well, at least the Wander side - excluding you cousin-Amanda-from-the-Miller-side of course!) 11.21.08 Amendment: I have since reconnected with many of the Miller cousins. Lisa, Mark, Shelly, you’re in here too. I have a feeling this long lost Miller list may grow, but if it doesn’t I’m cool with that too.

AND amazing friends:
I've reached out to my local posse to visit me in the hospital and act as advocates (you need one) on my behalf during the days my family can't be there with me. My hair looks amazing, thanks to my girlfriend and co-Drake-tenant, Tamar. And my toes and fingers are gonna be bangin' too after my mani/pedi this afternoon with Hollis.

Marni is always calling from the 'burgh to translate the Latin lexicon of my day to day into tangible terms. I reconnected with my dear friend and former collaborator, Frank, who unfortunately, through his 5+ year battle with Parkinson's, understands what I'm going through. And there has been so much positive energy sent my way from my peeps locally and beyond.

AND amazing employers and coworkers:
My city-dwelling coworkers, including Boss-man and friend Stevie D, John F and Jon E, have been providing door-to-door mel-portation on the two days a week I go into the office. The boys (I am a gender minority) at work are generous with the gimp jokes and that keeps me laughing. The president has pledged her support, made it clear that my job is safe and that I should be focusing on my health, and is arranging for me to get a wireless air port so that I can continue to work while in the hospital.

AND strangers:
There have been many, but here's just one anecdote for today's newsletter. Yesterday, just moments after I received THE BEST HAIRCUT EVER from Aja, I had the fortuitous timing of gimping by Bluemercury, a high-end cosmetics store on Walnut Street, while they were offering free Laura Mercier makeovers. And, even though I didn't have an appointment, they invited me in--I think because I looked so neuro-chic (definition: a cutting-edge-fashion combo of waif body, puff face, punk cane, emphasized by a highly stylized manner of walking and speaking).

Dr. Schwartzmann called to check in just a few minutes into my facial transformation. I started crying--luckily before they did my eyes--when Dr. S gave his verdict. And Amanda, who was prepping my skin to receive the makeup (envision pewter lids and lips glace), gave me the most sincere hug before she continued combating my 'roid-skin. In the end, I felt all kinds of beautiful. Amanda offered to visit me in the hospital. I accepted.

OK, glad we're done with this amazing crap.


The Conclusion
This update has taken on more for me than keeping the people who I care about and who care about me informed. Writing about this makes it feel less huge.

Let's hope they give me Ativan again.

xo,
Melanie

A Personal PS
Thanks to my everyone for your calls and emails. If you want to get in touch or visit while I'm in the hospital, my cell phone does work there and you can find me on the neurology floor. Please understand if I'm slow to respond to your messages, it's not because I think you're voting for McCain, don't have a pleasant phone voice, or have been driven into an irrational 'roid rage campaign against you. Well, you get it...

Transverse Myelitis: Here we go...very, very slowly

I'm having a challenging month.

And, as my good friends already know, I'm a little whacky. Well, I've just gotten a little…well…wackier.

My super-duper-long-time-time friend and 24/7 virtual doctor, Marni, asked for daily updates. I may or may not be giving dailies, but since long restful nights of sleep are out of the question right now, Neuro Detour is the new landing pad for occasionally self-indulgent ramblings of rare disease and common sentiment.


A Little History…

Despite the fact that I was a dancer, my body has always invited unusual experiences--hit by a car, car jacked at knifepoint, flat-face-lip-scarring-fall in Germany, cellulite, you know, the norm.

This past labor day weekend, after purchasing a gorgeous turquoise Helmut Lang jacket at 70% off from my favorite boutique, Joan Shepp, I was strolling by the haute and happening weekenders basking in the sun at Rittenhouse Square and strange things started happening to my body—weakness, pain, tingling, loss of bodily control, etc (I'll spare you all the details).

Needless to say I was freaked out and in the following week I saw a new rheumatologist, my nephrologist, and my urologist. (Are you thinking: HYPOCHONDRIAC. I certainly have, but over my past four health-insured years, I actually have been legitimately diagnosed with a slew of less rare diseases for which I’m under ongoing care.) I was certain that amongst them and my goofy body there'd be a reasonable explanation, an adjustment of my meds and diet, and whaaala, back to "normal."

Not quite.

All suspected MS, and implored me to see a neurologist. Though upsetting, I wasn't too distraught (at least that's how I remember it now), because MS is so treatable today that many newly diagnosed people leave mostly normal lives. By my last doc appointment on Friday, I was amply convinced that a little further exploration might take a few hours away from my benign social life, but I wasn’t about to spend the rest of my life pissing myself in public (oops…there’s that little detail I said I’d spare you), so I walked myself over to 219 N Broad Street to take the plunge, so to speak.

Dragging One Foot Forward…

As crazy moon-star-jupiter-alternate-galaxy alignment luck would descend upon me, Dr. Schwartzman, the chair of neurology at Drexel with an irreverent sense of humor that so matches mine had a cancellation for the forthcoming Thursday (otherwise, the wait would have been through '09). I had an MRI with Gad contrast of my head and spine the day before and dragged my scared, weak, right leg into his office.

Within 1 hour of Q&A, pricks, pokes, and other clincial examinations, Dr. Schwartzman diagnosed me with transverse myelitis (without really telling me what it is), a rare neurological disease most often caused by autoimmune disease, and arranged for me to be admitted to Hahnemann Hospital for “3” days (Dr. Schwartzman’s interpretation of numbers is very different from the rest of the world’s) that Monday (which turned into 6 days) for IV Solumedrol, a steroid treatment, and more tests, including a spinal tap, to get a complete diagnosis.

No big deal right? That’s the impression I got. One week on steroid drip, two weeks on steroid taper, and I’d be back with a bladder armed to let everything else loose on the dance floor.

Mom to the rescue.

Mom flew in that Monday morning, suitcase packed with sappy foreign films and Beaches (who watches foreign films or Beaches in a hospital?!), extended her flight twice as they kept extending my stay, slept with my cats, as well as my aunt Marci (who made a surprise visit from Montreal and picked up the cutest, comfiest Victoria Secret pajamas for me to wear in the hospital) in my little studio apartment, tolerated my ‘roid rage, and did her best to get some cute residents in my room...for both our benefit...to no avail.

Although I'm not claustrophobic or prone to anxiety, when asked this important question prior to my MRI, I did answer yes because they give you Ativan, a beautifully mind-numbing, pain-forgetting narcotic, which I willingly intravenously accepted. After 4 days, my concerned mother, who was always sneaking peeks at my chart during rounds, saw NO MORE ATIVAN written even more boldly than that next to my name.

It was good while it lasted.


Out of Dodge...

I've been out of the hospital since last Saturday, and my recovery has been slow. I'm still on high
doses of steroids, which my guy friends think have made me cuter ("less gaunt" in the face is a compliment I guess).

I just see a puffball, but carefully applied bronzer is a magical mask. And I take narcotics designed for neurological pain, which help a little bit, but not much, and with the steroids, I don't even get to experience the narcotic high.

Bummer.

Mobility is not my strength right now. The right side of my body doesn't work very well. I walk with a cane that I punked out with a studded belt, and I can't walk for long. Think 10-minute blocks rather than 10-minute miles. So I'm sticking to my 2-block radius for now, which happens to be the best 2-block radius in Philadelphia.

I am so fortunate to have great, caring friends here in Philadelphia--some of whom I've met over my past 3 years here, some Pittsburgh transplants who I've known for more than a decade, and many whom I've met since I fortuitously moved into The Drake a year and a half ago. Everyone is reaching out and offering their support-from grocery shopping and cleaning my apartment to beauty treatments and relaxing dinners at one of the cozy restaurants by my building.


Anticipation

I've known for about 2 years that it would be likely that some time within the next 20 or so years I could have an autoimmune disease, and compared to how things have turned out, my little bit of early stage chronic kidney disease was like a pimple with a fantastic benefit—it kept me skinny.

I thought when I got my diagnosis of psoriasis a couple months ago, which as far as autoimmune diseases go and how it's affected me has been mild and not a huge inconvenience, the picture was complete.

The complete array of autoimmune diseases causing the transverse myelitis won't be diagnosed until Friday at the earliest when my final test results come back, or it could take years. But the big hurdle now is recovering from the transverse myelitis. I need to keep practicing positive thinking, but it's not coming to me as naturally as usual.


Doctor’s…and Mother’s Orders

I'm supposed to get a lot of rest (which is against my nature and even harder to do on steroids), avoid sick people, reduce my stress, and in the brilliant words or Dr. Schwartzmann (NOT my mother), have sex and vodka.

I like him.

Marci has also offered her intercontinental companionship for my wine-drinking therapy. And I thought I'd have to do it all on my own. Any other takers?

I'm working from home most days and my coworkers have been altruistic with rides to and from the office on the days that I go in. The two major drawbacks to my inability to travel right now are that I can't fly to Pittsburgh to meet my niece Lila Kai who was born this week and I'm not aloud[sic] (I’m pointing this out to demonstrate the cognitive challenges of transverse myelitis. As a writer and immaculate proofreader, I knew this wasn’t right, but I couldn’t connect my synapses to find the grammatically correct fix) to take my two-week solo Christmas through New Years Day Ecuador adventure.

I'm scared about the likelihood of total recovery, but I also (think I ) know that if anyone can do it, I can. I am a direct descendant of survivors of all kinds, and I have really high good cholesterol, so I should be good to go. And if I don't recover completely with the steroid treatment (I have about 3 more weeks), there's another treatment called plasmapharesis, which is a 1-2 week plasma transplant that will give me all new antibodies and could do the trick. My mom is also working on getting me an appointment at Johns Hopkins, which has the only transverse myelitis research center in the world.


Now Let’s Make a Difference?

Once I'm stronger, I plan to start advocating for other people with transverse myelitis (only 1300 people a year globally are diagnosed with this, and only about 30,000 people in the world have it). But for now, it's that hackneyed but oh-so relevant expression, one day at a time. (11.18.08 Ammendment: One moment at a time.)

I'm very lucky, and I need to remember this every day. One more week without treatment and I could have been paralyzed, as 50% of people with TM become, which is when most are first diagnosed.

AND on top of that…

I'm not the woman walking down 17th street cradling her bunny rabbit with a green bow around it's neck…I don't have a yappy republican Jersey-girl voice…I can afford to practice retail therapy (liberally)…and of course so many more meaningful things like having who I can only know to be the best family and friends in the world.

So thanks for giving me something to do while I can't sleep and thanks for being there.

xo,
Melanie



NOTE: This was is a slight revision of the first email I sent to friends and family after my first hospital stay for Transverse Myelitis.