Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.
I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.
Click on the title of the post to read the full article.
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.
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.
For those of us that became sickos, were then fired from our jobs for "incompetence due to your illness" or simply laid off (perhaps you were the first target too), are now living off of Disability, and spending some of that on COBRA (thanks to the subsidy), barely getting by with multitudinous doctor and medicine copays, dreading the day the subsidy ends, and scared, strained, and stressed for the impending, unavoidable date that COBRA ends and the months or years that rest in between COBRA and Social Security Disability Insurance (SSDI)....read this article from Workforce Management.
According to the article Obama Considers Extending COBRA Subsidy, "The administration is considering whether to seek an extension of a federal law that subsidizes COBRA health insurance premiums for workers who are involuntarily laid off." To read the entire article click on the title of this post.
Let's gather forces, get informed, and make this happen - not just in our lifetime, but in the now-time.
Healthcare costs for individuals are rising dramatically.
Premiums for employer-provided schemes have risen four times faster than wages, and are now double their cost nine years ago.
The percentage of employees with an annual deductible greater than $1,000 increased from 1% to 18% between 2000 and 2008.
As a nation, the US spent some $2.2tn (£1.34tn) on healthcare in 2007. That amounts to 16.2% of GDP, nearly twice the average of other OECD countries"
ARE YOU SCARED? AND IF NOT, WHY?
I'm scared shitless (shitless is also a side effect of Transverse Myelitis (TM) & Multiple Sclerosis (MS), as well as many other neuro, autoimmune, and chronic illnesses, and/or it can be caused by or exacerbated by the meds we take) for the day I lose my health benefits.
What insurance company will insure a sick perso n? And at what cost?
(linked is an informative article from the NY Times.)
Years ago, after I was hit by a car and I tried to get health insurance, I was turned down over and over again. I wasn't even given the opportunity to pay exorbitant fees, which, as a young professional dancer (i.e., gives new meaning to the phrase "limited income") busting my ass teaching, waitressing, performing, and going to coll ege, I wouldn't have been able to afford anyway.
This is why we have to take action, speak up, sign petitions, write letters, inform friends, family, and neighbors of the importance of health insurance for all. This is why we should all look to the organization, Health Care for America Now (HCAN), and join them in lobbying for universal health care.
Take action with easy links on their Web site.
Become a fan on Facebook, then invite your friends to become fans too.
HCAN isn't just for people with chronic illnesses, but since this is a site dedicated to that topic, here's what they have to say about it:
People with chronic diseases
HCAN is advocating for reforms that will require all insurers to provide standard, comprehensive health care benefits that meet your needs from preventive to chronic care management services. The plan will have low out-of-pocket costs (like co-pays) so you can afford to get the medical care you ne
ed at any time. The public health insurance op
tion will allow patients to choose their doctor and hospital. Additionally, insurance companies will be required to cover pre-existing conditions so everyone regardless of health status or history can get comprehensive benefits at fair and stable premiums.
Socialized medicine - universal health care - is an absolute must have.
"It's [universal health care] long overdue. There has to be some sort of centralized universal health care available to every citizen in this country. Canada does it and it works," says Iya Garrett, R.N. (and one of my nurses).
Whether you're sick today, tomorrow, or in your (hopefully) golden years, access to affordable health care is a human right, but in our country it's a privilege. Anyone without insurance is a victim of a selfish society.
We even have a president that supports this. (Note: Video link)
And a cell phone company.
And believe it or not, Walmart.
How many of you are victims today? How many of you have ever been victims of our live-to-work-to-get-health-insurance society?
I abhor being a victim, especially to multi-billion-dollar corporations. And I refuse to allow its gated castle nether-world to rule over my health, lack there of, or death. I'm definitely no know-it-all, but I've been a victim of the corruption pandemic that plagues people with rare diseases, or just plain-old healthy insurance carriers.
Help me. Help me find new ways to guarantee that within this year or next, there isn't one person with the basic human right of access to health care.
OH MY OH MY, THE SENATE PASSES HEALTH BILL...SO WHAT?
Yeah, Obama's doing a great job pushing and pushing and pushing his (and my) healthcare reform agenda. But, lawmakers are still divided whether there should be a new government-run insurance scheme.
Socialism? Oh, my! You mean we have to split human rights evenly? Won't that ruin my capitalist agenda? Social responsibility? What the f**k does that have to do with my landscape-groomed-3000+ square foot home-lifestyle? says the capitalist, suburban, wealthy republican (sans republican Senator Olympia Snowe).
Note: above super duper unnecessarily long link will take you to a video.
"on the long, tortuous road towards reform of America's healthcare system, this was a decisive moment. Several members of the Senate Finance Committee called the vote historic. The Washington Post this morning reported that not since Theodore Roosevelt proposed universal healthcare in 1912 has any such bill come this far. After months of debate, the committee's chairman, Max Baucus, looked delighted and relieved.
In the end, those in favour of the bill won comfortably. This was due in part to a Democratic majority, but also to the support of Senator Olympia Snowe, who became the first Republican to back any of the bills proposed this year.
But this is not the end of the process. There are many more legislative hurdles to overcome before it becomes law. In the meantime, debate will continue to rage."
Let's channel our rage to win the debate. What do you think?
A big thanks to everyone who stopped by this weekend for my open studio, part of Philadelphia Open Studio Tour (POST) . My mother and I had a lot of fun meeting and mingling with all of the interesting people - from dear friends, to ex-co-workers-who-are-pursuing-an-MBA-in-Atlanta (holla David Papa! Enjoy your new drawing), to out-of-town strangers.
Over the weekend we had about 45 visitors, including quite an unexpected number patrons who purchased little paintings, purple-y collages, big drawings, and my very inexpensive, self-published chapbook; a near complete imbibing of a box of Pinot Evil (my favorite, adorably designed,cheap, yet super drinkable table wine...for goofy and informative links to this vino see below) and 2 bottles of Barefoot Sauvignon Blanc - it's an award-winning cheapie (currently on sale for $5.99 a bottle in PA Liquor Stores, and it's damn good, especially in the summer with sparkling water or plain seltzer).
To my open studio visitors, Thanks for sharing your time and a toast with me. You made my first (POST) experience a successful, inspiring, and exciting one.
To those who planned to come, but didn't make it: The brouhaha continued without you, but a tear was shed for your heart-breaking absence.
1885–90; < class="ital-inline">brou, ha, ha! exclamation used by characters repr. the devil in the 16th-cent. drama; perh. < class="ital-inline">bārūkh habbā (beshēm ădhōnai) “blessed is he who comes (in the name of the Lord)” (Ps. 118:26)
To those who skipped over me because they thought, who's this Melanie Miller chick, and how does she get off calling herself an artist: Satnam.
is the Seed Mantra or Bij Mantra and it is the most widely used in the practice of Kundalini Yoga. Sat means the Truth; Nam means to call upon, name or identify with. Sat Nam means Truth is my identity and I call upon the eternal Truth that resides in all of us. Chanting this mantra awakens the Soul, and more simply means "really". It is pronounced to rhyme with "But Mom!"
MY MONEY, MY CLIMAX, MY CORPSE POSE UPGRADE
I don't believe I have or would have ever suspected that I would pair the wors money and climax. But this weekend is worth a crescendo, so....as part of my artful celebration, I treated myself to a new, clearance-priced 8 Piece Bed in a Bag. It was either that or an automatic kitty litter box, but I couldn't find one that was both in my budget and had decent reviews. (Leave a comment if you have litter box recommendations for future retail relish.)
If it weren't for my mother who is gifted with patience, a keen eye for my style, and vision superior to mine, I may have ended up with an over-priced, underwhelming, itchy, crappy, dry clean only ensemble. So add that quadruple biggie-sized thank you from above to my energizer bunny mom.
DO NOT READ THE FOLLOWING UNTIL YOU SEE, "MOM, YOU CAN READ THIS"
IN LARGE RED LETTERS!!
And Speaking of Mom...
Mom's single, lives in Pittsburgh, is obviously one of the best mothers in the world and probably one of the best grandmas too (to my bro's beautiful kids; I'm single and childless). She's a great cook, conversationalist, cleaner of gimp-daughter's apartment and doer of said daughter's laundry, same-day flight booker for myriad ER visits and last-minute hospital stays (all mine; all her expense); and a great catch (i.e., those aren't implants).
If you're interested, email me with:
- Your similar-to-a-dating site profile, or a PDF of your profile if you have one
- RECENT pictures (no more than 3 please - and make them good ones)
- A copy of your 2008 tax return
- Criminal Record Clearance
- A short essay on why you think you would be good for my mother
- A complete 2-column list of your good qualities and flaws
- A list of ex-wives, current wives, and/or ex- or current-live-in girlfriends with contact info
MOM, YOU CAN READ THIS...
BACK TO ME AND MY SPRINKLES ON TOP...
(NOTE to the YOUNGINS': The following contains profanity.)
I'm still using a bed set from my married days, YIKES!, and its time to get that karma off of my body and out of my space - even if it is a Nicole Miller (no relation - unfortunately). And the rest...to pay for 6 (of many) prescription refills, the two doctors' visits' co-pays I'll have this week, perhaps I'll free the scarf/wrap I put on layaway at Joan Shepp, and then last and unfortunately not least - that ubiquitous four letter word, debt. (If you thought I was going to write fuck or shit, luckily those are two things I'm never charged for - assuming we don't count the TMers bowel-savers: reasonably priced stool softener pills and enemas.)
Center for Emerging Visual Artists (CFEVA), might you consider making POST a biannual event?
FOR YOUR VIEWING PLEASURE: PINOT EVIL ON YOUTUBE...
Pinot Evil Vintage? France
I liked this video so much, I subscribed to his channel.
Taste Along w/ Adam The Wine Guy #171-Pinot Evil
His nerdiness and occasional high-pitched syllable makes this one a keeper.
Dear Friends Near & Far,
You're invited to my "studio", which is included among 100's of artists as part of this year's POST, a city-wide open-studio art event. (How cool is that?)
It's my first year in POST, and my first year as a painter. I never imagined that when I lost my dance and my creative writing (for the most part) to Transverse Myelitis (TM) & Multiple Sclerosis (MS), I'd find it on paper and canvas?!
I'm grateful to have a new creative outlet, to be able to share it with others, and most importantly spreading the word about life as a badass gimp with a rare, debilitating, chronic illness. Unfortunately, nowhere in pop culture, are our lives accurately presented. That's not why I started this blog or why I started painting, but it's an added benefit that came as a nice surprise. And when you're sick like me, NICE surprises are few and far between.
I hope you'll stop by 10/10 or 10/11 from 12-6 for a visit, a giggle, a cup of tea or glass of wine, to say hi to my fab mom from Pittsburgh, or (dare I say it) to buy some art - 100+ original paintings & drawings starting at $10, as well as hand-made chapbooks of my poetry & art.
For this weekend only, prices will be less than on the Neuro Art Web site.
Feel free to spread the word. There's more info below.
PS To check out a sampling of my smaller work, visit Neuro Detour: On Paper. And, if you can't make it this weekend and want to see my work in person, feel free to email me to schedule an appointment, or you can purchase work directly from the Web site.
Who: Mel's in POST (click to see my personal page on the POST Web site)
What: Philadelphia Open Studio Tours (West of Broad Street)
Where: The Drake, 1512 Spruce Street #1802, Philadelphia, PA 19102: View Map
When: Saturday & Sunday, October 10 & 11, 12-6PM or by appointment
A WORD (OR MORE) FROM THE POST DIRECTORS:This October, The Center for Emerging Visual Artists™ is pleased to bring you the 10th Annual Philadelphia Open Studio Tours. Join over 300 professional visual artists, local businesses, arts organizations and galleries to celebrate 10 years of studio art! Artists and event partners in every neighborhood from Chestnut Hill to South Philly will open their doors free to public in the largest event of its kind in Philadelphia.
This year, the Open Studio Tours is happy to feature the following artists in the Center City West neighborhood:
Jerry-Gerard Di Falco
Carolyn George / CRG Studios George / CRG Studios
You can check out all of these artists work and locations in advance on the POST site.
Artwork Images by Me
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.
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.
I’d like to give you that special gift that keeps you on your toes (for those who can stand that is), or erect in your wheel chair, or upright in your bed. I’m about to take you on a journey – not to the rickety, run down land of scalpels and 4AM vitals – there’s so much more to the sicko life than that. This journey is for everyone.
It’s July, my adored birthday month (I know it's September, just go with it). The afternoon sun is so overbearing, my plants are cowering while I sit in front of my computer in my underwear. (When you are a professional sicko, you lose all modesty.) Today is July 28 (same thing...use your imagination!), the day before my birthday; the day before I enter my mid-30’s.
This will be my first birthday as a neuro-sicko-glamour-gimpette.
About a decade ago, I began celebrating my birthday week. Five years ago, I extended that to the entire month. This self-involved celebration only requires that I celebrate myself in some way each day. Not only is this practice a healthy alternative to aging anxiety, it takes the pressure off the “big day” for you, your friends, and your family.
Healthy or sick, even if we don’t recognize it, we are hard on ourselves – pushing our bodies and minds to their max: to be thin or get a raise or keep our job (in this economy, especially) or to be the best parent or the top student of the class or the prettiest woman or hottest guy on match.com, e-harmony, or whatever mate-finder Web site you fancy.
Self-destructive behavior like this is prohibited during the birthday month.
In the birthday month, you celebrate your achievements (even if you’re a total loser, moron, or derelict by society’s standards) – the positivity of your existence, your family, your friends, your health, however many dollars are in your checking account, your best feature, your biggest adventure, the best kiss you ever had, the smartest decision you’ve ever made. You indulge in simple, available pleasures like a bubble bath, a home-cooked meal – just for yourself. You buy yourself a new pair of sexy lingerie or briefs that show off your package – even if you have to charge it. You treat yourself the way you want others to treat you.
Those petite celebrations are seeds for growth. Take them with you, water them, talk to them, and allow your next birthday month to include the happier, healthier, more thoughtful you.
Kim, a homecare therapist visits me weekly. For the most part, I am homebound. As I enter the 11th month of my battle with Transverse Myelitis, a rare and incurable neurological disorder, I tell Kim that I don’t feel like celebrating my birthday this year.
Ms. Fearless, moi, actually fears the entire month of July. Bereft of self-involved, self-indulgent, self-aggrandizing, self-sufficient, self-satisfying celebration, I am tired. I don’t want people to see me. I don’t want to celebrate my shit life. I don’t like my steroid face. Blah, blah, blah. Complain, bitch, moan.
VOICE IN HEAD:
Come on Melanie, get over yourself. You’re not the only person suffering, and you’re certainly not the sickest person on this planet.
Since September ‘08, I have been on steroids. I was tapering off of them in my birthday month – finally something to celebrate – no more Alvin and the Chipmunks cheeks, time to cook up those blowfish veil, pop pop goes the balloon face.
Soon, I would have cheekbones again! And maybe my skin would even be zit-free. Absolute glory! My ego is completely satiated.
Note: My face is still not zit-free, and I am still on steroids.
The next day, I relapsed - spending a 5-day so-called holiday weekend on the couch in excruciating pain from migraine to baby toe. Until the IV Steroids could be delivered – 1000mg of Solumedrol infused through my portacath for five days – I existed in a state of delirium with a fully loaded semi driving back and forth over my body 24/7.
I never knew such pain existed.
I have plenty of pain pills: oxycontin and oxycodone. These glorious, mute, little friends give me my quality of life. But the relapse was even stronger than the oxy twins could bear.
VOICE IN HEAD:
Poor, miserable me.
And if you’ve ever been on high-dose steroids, you know I’m not joking. Mood swings. Tears and fits. Outer body experiences. You are lost in the valleys of your newly remodeled fluid-retaining face, fingers, feet, ankles, and the inner tube around the section of your body that used to be referred to as a waist – a damn good trim and slim waist (self interjecting).
So here’s the big question:
What the F**K do I have to celebrate?
And a Poor Excuse for an Answer:
Eventually, my hapless grin takes over, and I find shattered pieces of happiness, a giggle, a sunrise so beautiful I want it to swallow me and take me to the land of light and color. Lies. All Lies.
And then there’s reality…Question:
How the hell does any celebration happen under these circumstances?
VOICE IN HEAD Answer:
It doesn’t. So make it happen.
Stop whining, arrest your self-centered bitching, blow your nose, take a shower, brush your teeth, get off your ass and do something that matters. Do something that’s meaningful to you. Just do.
Whether it’s a birthday, the solstice, a pagan or religious holiday, the week of your period, or your anniversary, you have the power to turn that fleeting moment into a grand occasion. And stick to it damn it.
Considering my unexpected relapse, I extended my birthday month into August as well. However, after the first days of celebration, I was back in the hospital. This time I was imprisoned for almost a 3-week stay of myriad adventures. But that’s over and done with. Right now, I need to go and celebrate the rain.
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 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.
Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 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.
2 days of plasmapharesis
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)
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.
For now, let's toast and boast.
I was invited to write an article about myself and TM for The New York Optimist, an online magazine with more than 55,000 readers. The publisher liked the article so much he made it the cover article.
I'll continue to spread the neuro word here and there. But for this week, let's hope that 55,000 more people get a little edumecation [sic] about how special we 1 in 1 million-ers are...
To a cure.
And in this instance to coverage.
Tonight I may eat a butter sandwich with a glass of vino to celebrate. And maybe if we channel our energies on the word spread we'll accomplish so much more as a unit than individually.
spread, spread, spread, spread, spread, spread,spread...
I'm feelin' it (except in the places in my body that are TM numb). :)
Since I wrote last I've had:
- 7 sessions of plasmapharesis
- 1 permacath surgery
- 2 trips by ambulance to the ER in 1 week
- 1 hospital stay
- 2.5 5-day infusions of IVIg (I'm on the third one currently)
- 1 rained-out art festival
- 1 visit from a high school BF
- 1 emergency visit from my mother (on the 2nd trip to the ER)
- bi-weekly physical, occupational, and speech therapy sessions, and
- 1 break-up
- 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 sleeping my life away.
I'm bored with being tired.
I'm tired of sleeping.
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.
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
Take a Chance...or I'll embed Abba videos
Here's your chance to share your personal story and be heard by Obama or one of his cronies. I did it. So you know what that means. So should you.
I got the down low from the always interesting Fractured Atlas Blog, of which I am both a member and grateful subscriber. Great political/arts blog. Check it out. Join. Subscribe. Whatever you do, I'm sharing today's article/call to action:
The Obama administration is looking for personal stories about the need for health care reform. This is a great opportunity to ensure that the arts community isn’t left out of this debate.
Remember that not all health care reform proposals are created equal. Some - such as those designed to expand employer-based coverage - would actually hurt our community more than help it. We can’t afford to give up our voice at this critical time for this critical issue.
After you post your story, you should feel free to share it in the comments below (if it’s not too personal, of course).
PUT THOSE FINGERS OR TYPING AIDS TO WORK
I didn't mention the arts, but you don't have to be an artist to write to The Man.
Well, with all the healthcare crap and how to make money now thoughts on my plate, I couldn't help myself but reach out to my buddy Obama and share my thoughts in a 2-part letter about the corruption of healthcare (specifically our buddies, Aetna) and the holes in the Cobra subsidy plan - which affect me personally. By the way, if he can write (see pic to right)...so can you. Just sayin'.
Do ya think he'll listen?
I even gave him some links to Neuro Detour for further reading. Who do you think is going to click on those in the White House, and I wonder how and if the location of said visitor would show up in Site Meter as "White House". Hah! How cool would that be.
MY LETTER (ROCKS):
Dear President Obama,
I have two personal stories I'd like to share with you.
1. Critical Coverage - DENIALS
On September 18, I was diagnosed with Transverse Myelitis, a rare and debilitating neurological disorder. Maximal recovery occurs within the first 3-6 months. Treatment is both limited and imperative. Aetna denied my treatment during this critical time period.
I went from being an active, contributing member to society, to nearly blind, nearly paralyzed, and barely functioning. Thanks to a pro-bono attorney, Jennifer Jaff, we were able to win the case against Aetna in January-their decision overturned after many denials.
I am now receiving IVIg, the treatment that could have made a much bigger impact on my recovery. While I have not gotten much worse, I have not improved. This is due to the lack of treatment during those critical months. This is due to Aetna.
I have included a link to my blog, Neuro Detour, and directly to entries about how Aetna adversely affected my life:
To get the entire Aetna story, please refer to my post, “Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story”:
2. Issue/Personal Story #2: COBRA
The Cobra subsidy is a wonderful idea, but it’s imbalanced. I have been legally separated from my ex-husband for 2 years. We have no contact. Our divorce is scheduled for June. This was a post-nuptial agreement so that I could continue to have benefits, as I was self-employed at the time.
In January 2009 my employers put me on a 90-day unpaid leave of absence (LOA) and in March (30 days short of the LOA) they terminated me, due to my "illness" and its accompanying "disabilities."
Now, although I am eligible for Cobra, I am not eligible for the Cobra subsidy because I am eligible for Cobra through my ex-husband. This stipulation seems random.
I'd like to understand the logic behind this, because the $420+ a month I have to pay out of my disability income is all on me - not my employers, who most likely wrongfully terminated me, and should be partially responsible for my Cobra payments under the context of the new stimulus plan.
What a great plan it is! Too bad, people like me, the 1 in a millions, aren't supported by it.
I urge you to amend this aspect of the Cobra subsidy employer responsibility. Whether I get Cobra through my employer or my ex-husband, it will still cost me at least $400 - money I could be spending on healthy foods, rehab, expensive medications, and basic living expenses, which I can barely cover in my current situation.
If I were to have that subsidy, it could provide me with the necessary income and returns to bring me closer to being a contributing member to our society and workforce - a place where I very much want to be.
Thank you for your time and consideration.
Even if noone in power reads or responds to this, I hope one of you do. If you do, feel free to post it here too. We're all "dying" to hear your stories for action and change.
Thanks for reading, and double thanks (in advance) for...(clear throat)...commenting.
PS...I CAN'T HELP MYSELF...I LOVE ABBA
And more versions for your viewing pleasure:
Take A Chance On Me
Take A Chance On Me (spoof?)
Take A Chance On Me - no embedding allowed (probably original vid)
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...
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:
(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?
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:
No sir, Jesus does not help jerks with jobs and social responsibility blindness.
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!
Please share your tales of curing through cussing here. Thanks!
My piece, "X Marks Not the Spot" has been accepted for publication in the poetry and art magazine, Monkey Puzzle. It will be featured in issue #7, which is available for advance purchase.
Thanks to all of you who are supporting my life in transition. I'm feeling so grateful that I've found a new artistic outlet.
A body in revolt for a dancer is a big deal - hey a body in revolt "period" sucks - but transforming that body into 1- or 2- dimensions makes the pain/burden/loss/mourning process a lot easier to take.
Here's to self-expression - studied, taught, or intuited.
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:
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.
FIRST, WHEN THERE'S NOTHING BUT A SLOW GLOWING DREAM...
My childhood girlfriends and I loved Flashdance. Still do. Although, I wouldn't dare watch it today because, as a recently disabled person (7 months and counting!), that "feeling" isn't one I'm ready or willing to confront.
In 1983, I was 8 yrs old, and I already knew what I wanted: I was going to be a dancer, and even though I didn't yet know the word choreographer, I was going to make dances and live my life by "the feeling" because there was no better feeling than dancing. Jennifer Beals represented everything my trio of dancing BFFs wanted to be:
Struggling dance success story by night or by whatever means possible.
And we danced and danced and danced to the Flashdance soundtrack until each of our cassette tapes wore out, and then we went to Monroeville Mall and bought them again.
We could never have too much flash or dance. And if that ain't a universal truth, it damn well should be.
Though we all took different paths in life, and I - probably the least naturally talented dancer of the three of us - did fulfill that childhood dream, we are still BFFs, and, especially in my situation, that's a "feeling" worth dancing about...
Even if it's an awkward, disjointed, cane-dance.
Even if it means a day or two of couch-potato-inducing pain.
Even if it makes me want to cry that each limb and extremity in my body is listening to its own MP3...with headphones.
Bette Midler meets Marilyn Manson meets Depeche Mode meets Coltrane meets John Zorn meets Stevie Wonder meets Beastie Boys meets Beyoncé meets Barry Manilow (Jewish moms everywhere rejoice!) meets Justin Timberlake meets Liberace (loved him...don't laugh) meets dog barking on street, and you have a....Pretty funky, huh? Now that's experimental dance...some things never change after all.Transverse Myelitis (TM) body on the dance floor.
I CAN'T HAVE IT ALL, NOW I'M DANCIN' FOR MY LIFE...
Now I'm 33, and over the last four years my body began an escalating rebellion against the "feeling" - that dancing feeling that I, like most dancers, wanted to bottle, pickle, and preserve for eternity.
Instead of spending my days in the studio, cleansing my body with sweat, spirited by the immediate gratification of movement and its endless (but limited) potential, loving (I mean I heart heart heart kind of loving) the process of mind/body discovery, and ultimately sculpting what movement was worth remembering into a dance worthy of a stage, I now spend the majority of my days at home or in the hospital or in a doctor's office, attached to some machine or expectation.
And while this is not a universal truth, it is simply a fact. In other words, it may sound like I'm whining, but I'm not. I assure you.
Do I hate my life? sometimes
Do I hate my body? sometimes
Do I love my body? occasionally, but only because I know I should (happy thoughts people!)
Am I miserable? from time to time
Am I grateful? ditto, but only because I've (been lucky enough???????) to have had "life experiences" that enable me to understand the theory of relativity
And speaking of relativity, I still have one thing in common with the Old Mel Body - we both have/are devoting our lives to pushing through our own physical limitations.
WHAT A FEELING (I AM MUSIC NOW), BEIN'S BELIEVIN' (I AM RHYTHM NOW)
I wake up with pains, I spasm, I tingle (and not the XXX-rating-worthy-tingling-kind-of-tingle), I ache, I burn, I am on fire, I fall, I stumble, I hit my head on toilet seats (thank goodness for good manners), I speak in word stews, I can't tell stories (but I can write them), I get blood-in-the-toilet UTIs because I've lost that lovin' feelin' (tho I haven't lost the love), I leak, I pee in public (yes, I know there's a thing called a bathroom), I have orgasmed over the toilet (gasp!...I am too old to wet the bed), I have skinny legs and arms that hide elephants in them like magic, I put deodorant on 3x in a row (and it's not an OCD thing), I forget the nice things people say, I forget the mean things people say, I forget, I forget, I forget, I have friends that are missing (not everyone knows how to handle the sicko-situation), I take poison upon poison upon poison called hope, I see, I don't see, I see peripheral flashes of bug and snake ghosts dancing past my feet and up my apartment's walls, and...
more often than not, I find this hysterically funny.
I AM LAUGHTER
(BEIN'S BELIEVIN') BEIN'S BELIEVIN'
Even though my latest prescription is Imuran, an immuno-suppressant/low-dose chemo (with quite the list of side effects...oh what a feelin'!) to treat the autoimmune processes that are feeding my TM, even though I may never find a singular rhythm to follow again, even though I'm scared of what will or will not happen:
I heretofore choose laughter as my sole/soul prescription. (And oddly enough, when I'm in the belly of hysterics, laughing at my own nutty neuroisms, my body finds a dance that meets rhythmic logic.)
There. I said it. In legalese, so there's no going back.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."