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

Michelle Vogel

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

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

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

 

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

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

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

Come on now. Edjumacate me. Please?

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

 

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

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

 

 

Fistulas and Floaters: A Fluffy Fluff(less) Piece Follow-Up

Hello, my name is Melanie. I am a floater.

Yes, I admit it, I am one and I see them too, those buggy bug-like-snake-like-and-occasionally-verminesque dashes of absolutely nothing that dance like kittens on catnip, and according to "Expert Advice", there are no medications or supplements proven to treat or remove floaters - neither the human kind or the trippy eye kind. Yep, that's definitely me. (And so is the fact that I find this site on Now You Too Can Live A Life Without Floaters LOL funny.)

So, despite the shite (the rhyme was beeeegggging me) of life as a neuroquadrilogical (a neuro-ite with 4 disorders), apparently I, as a human I, am neither removable or medicable /ˈmɛdɪkəbəl/ Show Spelled Pronunciatio[med-i-kuh-buhl] (this is a real word).

Note that this post is being written at 8:30AM, and it's not the I'm waking up for work, or my morning power walk, or jaunt to the coffee house to get the best seat by the cute guy. No, it's the...

I'm-Still-Awake-Despite-Vicodin-NeuroNarcs-OtherNarcs-OtherOtherNarcs-RecentlyDoubleDosagedSleepingPills-and-AFewOtherOtherOtherNarcs-8:30AM.

Why?! you ask with mouth agasp astonishment, even though I witnessed a beautiful sunrise.

You just got out of a 9-day hospital incarceration, Melanie! you proclaim (I write redundantly, duh, there's an exclamation point, BUT think of that as your memory on XYZ neuro disorder, and maybe you'll understand me a little better).

You had a Lumbar Puncture, EMG, a hemoglobin count of 6.4 and an iron count of nearly nil, 2 blood transfusions, and a 2-hour fistula surgery (see gross video below) in your RSD arm, which became both visually unappealing and very RSD-y post-op requiring IV morphine (ahhhhh) to quell the pain! you castigate with love and a tiny dose of compassion.

You have RSD, since when did you have RSD? someone out of the cool people's in-the-know loop, inner-looplessly interjects.

That's the 4th -osis in the neuroquadrilogical grail, some do-gooder, yet somehow cool enough to be in the loop-er whispers under the raging voice of the still unnamed and determined sleep-begetter as though he OR she were Morpheus in the flesh.

Your osteoporotic /ˌɒstioʊpəˈrɒtɪk/ Show Spelled Pronunciation [os-tee-oh-puh-rot-ik] bones need to dream, and even tho it's contraindicated that your osteopenic bones hit-the-sack too, hit that sack, baby, I said hit it, you shout with growing fervor, fever, and a bit of kinky excitement.

What I meant to say is, umm, errrr, you need, I mean, really need, your beauty sleep, you whisper trying not to sound perverted, invested, or ridiculously and/or inappropriately judgmental.

Here's the dealio. Up, Down, Sideways, or Snowfallen, YOU SHOULD be sleeping!!!! you prod as if I chew my cud. As though you could even play a doctor on pay-to-be-on-it TV (I think with a 3-snap-Z).

And now you're nagging. And all sickos; friends and family of sickos; and doctors, nurses, and caretakers of sickos know - don't nag the sicko.

But wasn't that a fun way to let you know what I've been doing for the past week and a half!


DIG MY FLOAT
To clarify my opening statement, I am undoubtedly a floater. I float between home and hospital. I float between reality and the occasional hallucination or delusion (don't worry, now I know it's NOT 1985). Meds do not work their magic on me, so I float between sleep-time and wake-time, all of which is in-pain-time. My life as I knew it or want it to be is somewhere afloat, so I also float between treatment plans, treatments, med changes, flair ups, relapses, and/or exacerbations. I lay on my couch more often that I care to admit as though I am floating, nothing touching my skin, causing me pain. And my train of thought is super duper floaty (sign: I'm stretching the metaphor...STOP HERE).

IN ADDITION TO THE ABOVE RANTS AND INTRODUCTIONS,

Due to a recent flair up that included insane pain down what felt to be my swallowing path, the inability to exhale or speak or swallow, dizziness, and some other strange happenings, my fabulous and famous neurologist, Dr. Schwartzman, had squeezed me in last last [sic] Wednesday for an emergency visit. The result:

Back to the hospital I go. And I was admitted Monday for what was supposed to be a few-day stay. I know by know to use a variety of complex mathematical equations to estimate the actual duration of my hospital life.

I had my fourth spinal tap, which coupled by watching the video below now makes me certified to begin giving LPs to any sucker; got my 2nd round of blood transfusions; my 2nd EMG of my life (the worst test ever) tho I was spared the needle jiggling in the nerve ending 2nd half; had my regular IVIg therapy; had consults with a hematologist, my rheumatologist, a podiatrist (don't ask), and a couple other 'ists and 'ents; and a bunch of other stuff including having way too many hot flashes for a gal my age. I have a lot of follow-ups in the forthcoming weeks. And hopefully, they'll be able to figure out the cause of my new-found chronic anemia.

Author's Note: This is sickly funny.

I almost made it the entire stay without a roommate (yippee!). And just as my mother had warned the staff as they began preparing the room for a 2nd body while I was in surgery Monday, crabby Melanie returned from the OR and reared her wormy, bruised, apple-ish head, but nothing that a hug couldn't overcome...and a xanax and migraine meds. I could go on about my lost sanctuary, and it would be funny, but it would be mean too, so I'll bite my fingers, and just say, you had to be there (and I might mean that in more ways than one).

On Tuesday, I was discharged from the hospital by a soon-to-be-remiss resident without any scripts, including one for pain meds for the fistula surgery,

(Wikipedia: In medicine, a fistula (pl. fistulas or fistulae) is an abnormal connection or passageway between two epithelium-lined organs or vessels that normally do not connect. It is generally a disease condition, but a fistula may be surgically created for therapeutic reasons.)

Author's WARNING: This video may be deemed gross by people as hardcore as even me. I lived through it, but thanks to modern bliss, I didn't see it.

prescription-strength iron for my red-blood cell-less bone marrow, or that Sally Fields medicine or something like it for my oustish steroid-chemo habit that has left my hips and spine as delicately vitreous as any kind of wine glass - cheap, semi-cheap, restaurant-grade, or imported from the glass capital of Europe expensive - in my incapable hands.

But, most importantly, as always, my mother was there for most of the journey of what may be my 5th or 6th (I've lost count) extended hospital stays, as were a select few of my most supportive (and available) local pillars who visited as often as daily (can you believe it!), and many more by phone, text, or mental telepathy (i.e., I'm giving you an out...take it). I made a new and amazing neuro friend. And this time, Dr. S finally made some headway on his promise from almost a year and a half ago of having cute interns.

Finally.


PS I'm sure I'm forgetting important things, but by now you know better than to expect me to remember much.

PPS This post totally qualifies as a "My Life Sucks But I Rock" post.

PPPS Maybe now that I have some red blood cells, I'll find the energy to write more.

PPPPS I'm not making any promises.

PPPPPS This is my arm today(!):

New Year New Shit

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

1st step: Transverse Myelitis

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

2nd step: Encephalitis

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

3rd step: Multiple Sclerosis

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

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

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

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

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

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

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



Perhaps there will be links and pictures later.

My TM Soul Sister Makes the News

I met Kim through Facebook, a social media site that seems to attract all 30K TMers in the US. We've built an unbelievable network, so if you have TM or MS and haven't joined your fellow neuro-ites, now would be the time to do it - so we can congratulate Kim, and keep thoughts of her in our achy bodies and recalcitrant bladders and know that there is hope.

Click on the title of the post to read the full article.

Take Action...There's Hope for Myelin Repair

This just in from the Myelin Repair Foundation

Bottom line:
Myelin Repair = Spinal Chord Disability Extinguished. Wow.

Top shelf:
All donations are matched - kind of like doing birthday party shots.

Who knows:
I'm just doing my job here of spreading the word. It's up to you to make the decision if this is a clinical trial you'd like to support. If I had even an extra $10, I'd chip in...but I don't. My feeling: it's worth the investment. Multiple Sclerosis (MS) is not the only demyelinating disease out there. Transverse Myelitis (TM) fits the bill too.

The Call to Action:
(copied from the Myelin Repair Foundation Web site)

Help Us Raise $100K to Fight MS!

Steve Miller, Ph.D.
MRF Principal Investigator

Myelin Repair Foundation (MRF) wants to fund a clinical trial for a promising way to treat MS -- by "tricking" MS patients' immune systems into not attacking their myelin.

MRF Principal Investigator Steve Miller, Professor of Biomedical Sciences from Northwestern University, has a promising idea for an MS treatment.

In multiple sclerosis, the immune system sees myelin proteins as foreign material and attacks them. Recent research indicates that we may be able to "trick" the immune system into believing that the myelin protein is not a foreign material.

Bringing this idea to a clinical trial will help us determine whether this innovative treatment is safe and effective for MS patients.

Visualization of myelin protein attacked by T-Cells

MRF needs your help to make this clinical trial a reality.

Help us raise $100,000 to fund this trial.

The total cost is over $2 million. However, through collaborations with other funders, the MRF is providing only $200,000 for the trial over the next two years. ($100,000 for the first year and $100,000 for the second year).

Donate today. Help us reach the goal of $100,000 by June 30, 2009.

Your contributions to the clinical trial will be matched 100% thanks to another generous donor, bringing us straight to the finish line!

Spread the word to 10 friends and family about the potential of this clinical trial and help us spread the word to more people.

Scott Johnson
President
Myelin Repair Foundation

Notes: This is an early stage clinical trial being conducted in one research institution. All clinical trial patients have already been selected.

If for some reason the clinical trial does not move forward as planned, you can be assured that 100% of your donation will be used to support other myelin repair research conducted by the MRF.

Learn More:

• Research behind the Clinical Trial
• Myelin Repair Foundation's Efforts to Accelerate Research with Clinical Trials

Donate Today

Show your support for speeding up research on MS by funding our clinical trial!

Use the widget above to help spread the word.

Tell Ten Friends and Family

Tell friends and family about Myelin Repair Foundation's promising clinical trial. Encourage them to learn more about our work and donate to help raise $100K!

Register for our e-Newsletter

Learn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.

The Myelin Repair Foundation is the only organization exclusively devoted to investigating the way in which the body creates and repairs myelin — one of the most promising approaches to treating MS

***

Enough About Me...My Neuro Friend Needs Your Support

...THERE'S ALWAYS AN INTRO
When you're hospitalized for weeks, eventually you make friends. It's like being a guest artist for a month in Ketchikan, Alaska (you're all relating right now I'm sure). In Ketchikan, which has a population of 8,500 on a good day, you never befriend the tourists. What's the point? And if you're in Ketchikan for more than a week, no one considers you a tourist. And while I was there, I made friends with the people whose home I was living in, the artists and directors I worked with, and a few locals.

Four years later, I still consider a couple of those people friends.

The hospital is no different. I made friends with other Hahnemann Hospital non-tourists: nurses, security guards, Lou, Al, Clark, and Muhammed from the smokers area, and Lynn, Danielle and Judy from the neuro floor. These people - especially my fellow neuro-ites - made being hospitalized less sickly and more fun. Don't get me wrong, it still sucked.

But like my Ketchikan buddies, some of these new partners-in-sickliness have staying power.


NEURO-ITES ARE A FUNNY BUNCH - WORTH THE INVESTMENT
Last week, I asked you to help Lynn. Today, I'm asking you to help my 26-year-old girlfriend Judy Hopkins.

Judy & Mel hangin' at Hahnemann...for weeks

As a fellow-short-term-memory-in-constant-pain-sleepless-rare-neuro-disease-battler, Judy has become one of my most enthusiastic rooters-on and a great friend. And if you had the opportunity (which if you didn't you will once I get the chance to download the documentary footage from the hospital), we're also great entertainment (imagine two people who can't remember what they said 30 seconds ago having a conversation until 4am...it's right out of a Beckett novel).

If you help, maybe we'll take our shtick on the road.


THE COST OF BEING RARE
Unlike my last-minute stay of execution from Aetna, the expenses of Judy's experimental treatments (which are the last possibility for her to survive an atrocious illness and live like a human being) still are not covered by any insurance.

To give you an example of the financial and emotional costs of battling a rare disease and its affect an entire family, just hours before Aetna overturned their denial of my treatment coverage, my single, middle-class mother was about to take out a home equity loan to cover the costs of buying IVIg and paying for a home health nurse to administer it - which could have reached 100s of thousands of dollars. And that's just part of the story.

It doesn't matter if you have insurance or not
With or without insurance coverage, being chronically sick is expensive. And when the insurance you pay for DENIES COVERAGE OF NECESSARY TREATMENT, it's like being forced at gunpoint to buy 50 Mercedes SLR McClarens when you're homeless.


JUDY'S 10-YEAR BATTLE WITH RSD
I'll let Judy summarize her story in her own words:

Hey guys,

For those of you that don't know, one year ago I went to Germany for treatment for RSD (Reflex Sympathetic Dystrophy), also known as CRPS (Complex Regional Pain Syndrome) a chronic neuropathic pain disease that I've been battling for the last ten years. The treatment is known as a Ketamine coma. Because of Staff Infection Pneumonia I was in a coma and on life support for three weeks, but awoke in complete remission. Unfortunately, it didn't last and I relapsed a month later.

Over the last year, the disease spread, just like it had for the nine years previous to the first coma. Unlike previously, this time it also went internal and infiltrated my organs and affected my digestive and respiratory systems and eventually spread into my brain. I was unable to eat and hold my food down and was having more and more difficulty breathing. I was slowly losing certain brain function and therefore, became the fifth person ever to have the coma done a second time, which was done in December.

As a result of how dangerous this treatment is, it is only available in Germany and Mexico and is not covered by any insurance. Unfortunately, because of how progressed and severe my case was the majority of treatments I got and continue to get in the US, are considered experimental and are not covered by insurance either. As a result of this, friends of our family are hosting a fundraiser for me and my parents to offset some of those expenses...If any of you are planning on attending, it would be helpful to purchase your tickets ahead of time.

Thanks and Happy New Year,
Judy

HOW YOU CAN (& should) HELP - IT'S DAMN EASY

1. Attend the fundraiser (see info below)
2. Send a check (any amount!)
   
3. Donate an auction item
4. Volunteer to help the day of the fundraiser

fundraiser info
WHERE: Brickwall Tavern and Dining Room, 522 Cookman Ave., Asbury Park
Show map of 522 COOKMAN AVE, ASBURY PARK, NJ 07712
WHEN: January 25, 5:00-9:00 P.M.
WHAT: Free drink, buffet, Chinese Auction
HOW MUCH: $25/per ticket
HOW: Call 732-531-2574. Reserve now.

and if you want to take it one-step further:

1. Forward this post to all your contacts and urge them to take one of the easy-as-pie steps above.
   
2. Become a rare disease and/or disability activist.
3. Write letters to your local, state, and national government officials about the corruption of insurance companies, the need for full and timely coverage, and the eradication of the erisa act.
4. Sign petitions to support people with disabilities and rare/chronic diseases.
5. Or, if you're lazy or not interested, just send a damn check of any amount to one of the many large and small patient advocacy organizations that are lobbying, letter-writing, donating their time and services, and making a difference one baby (or gimpy) step at a time. (I recommend, Advocacy for Patients with Chronic Illness, Inc. and IG Living, two organizations that have made a huge difference in my quality of life.)

Oh God: Part 2: Self-contradiction, Irony, and a Prayer

updated 12.30.08

I just got word via email, that one of my dear Hahnemann Hospital companions, Lynn, had a seizure last week that has taken her memory back in time to the 1990s. She suffers from both Reflex Sympathetic Dystrophy (RSD) and severe seizures, and had been making remarkable recovery since her hospital release. She sent me an email last month, excited that she was up to 25 minutes of walking on the treadmill and concerned about my recovery.

Her husband, Dave, was thoughtful enough to alert me of her current condition, wrote, "she could use your prayers." Ironically, I received this email just as I had posted Oh God on Christmas Day, which (blasphemously?) questions religions' reliance on prayer over personal responsibility.

After recovering from my shock and sadness for both Lynn and Dave and despite my disbelief in the big man in the sky and my rejection of organized religion, my first response was to say a prayer for Lynn, which came simultaneously with, Oh shit, my prayers? Not only does this contradict almost everything I had just published moments before, but what good are my prayers to anyone now.

And now, we're all probably thinking (I am including myself in this), What?! A GHB (godless heathen bastard) wants to pray? Yessirreee.

And that is where the realizations began:


Realization #1: I want to pray for Lynn
Although I was raised in a fairly religious household, and we said shabbos prayers, prayers over food, prayers for the sick and all kinds of holiday prayers, I realized, I don't know a single real-deal prayer. But real-deal prayers aren't my style anyway, so I'll ask my real-deal-religious friends and relatives to manage that part.


Realization #2: I have never stopped praying
Before I got sick, I practiced yoga regularly. Since my first class in Berlin, Germany in 1997, most of my yoga practices, whether group or home alone, have included chanting. These are prayers sent out to the universe for benevolent things, such as peace and enlightenment, and they are as valid to me as any organized religious prayer.

Example:

Peace mantra

OM SAHANA VAVATU SAHANA BHUNATTU
SAHA VIRYAM KARAWAVAHAI
TEJASVINAVADITAMASTU
MA VIDVISHAVAHAI
OM SHANTI SHANTI SHANTI OM

Together may be be protected
Together may we be nourished
Together may we work with great energy
May our journey together be brilliant and effective
May there be no bad feelings between us
Peace, peace, peace

(From the Kato Upanishad)

Realization #3: A smile is a gesture that is a prayer
I believe that when we send goodness into the universe, we will receive goodness. For instance, if I smile at you, there's a good chance you'll smile at me, and maybe that smile will be passed on and on, altering a moment or a day or a lifetime for someone. Or maybe it won't. Either way, that smile is a prayer for happiness and connection.


Realization #4: My neurogenic bladder meditation is a prayer
Since I got transverse myelitis, I have had numerous symptoms and side effects. One annoying and time-wasting one that drives me crazy is my neurogenic bladder. While in the hospital, I started doing a pee meditation every time I went to the bathroom.

As I sat, waiting for the release from my strong urge to urinate, I closed my eyes, rested my feet on the floor, placed my palms together, lowered my head, and quietly chanted, pee, pee, pee. Since October, I've probably whispered that word 1000's of times, and almost every time I did my pee chant, it would eventually work. Sometimes it would take 30 seconds, sometimes 15 minutes, and sometimes it was a wash. But my pee meditation is a prayer that works.

Self-Contradiction: I'm still not holding my breath or pressing my palms together. Strength and stamina is a precious commodity when you have transverse myelitis, but responsibility is not. (From my 12.25.08 post: Oh God)

Religious-Contradiction: "... if you want to do something well, you have to practice it continually, even when you don't feel like doing it. This is as true of prayer as it is of playing a sport...a musical instrument, or writing. The sense of humility and awe of G-d that is essential to proper prayer does not come easily to modern man, and will not simply come to you when you feel the need to pray. If you wait until inspiration strikes, you will not have the skills you need to pray effectively." (From: Judaism 101: Prayers and Blessings, The Need for Prayer)

Realization #5: Hope is a prayer
People hope to God for miscellany every day: I hope to God I make this light. I hope to God I get an A. I hope to God everyone shows up. I hope to God this guy really likes me. Whether or not the name God is inserted in that I hope to statement, it's a kind of prayer - a selfish prayer - but a prayer nonetheless.

While these are superficial examples, there are many people who voice their hopes publicly or privately every day. I hope that I get 100% recovery, and I hope this for Lynn and all of my hospital friends, and all the people suffering from similar or drastically different illnesses.

I even admitted to this in my last post:

I have many religious friends and family...[and] I even hope [their prayers for me will] work their magic so that I'll be healed.

Realization #6: Prayer is what you make it - with or without God's intervention
If I want the world to pray for Lynn's recovery, then I must believe in the power of prayer. Prayer exists in as many forms as the image of a higher power in different cultures.

Prayer can be a kind thought, a smile, a meditation, a chant, a real-deal-foreign-language script. One does not have to believe in God or Allah or any higher power that acts as the conduit for all wishes, hopes, and prayers. We can answer each other's hopes and prayers.



Realization #6b: We can answer each other's hopes and prayers
I had to repeat this. It both validates and invalidates what I said about taking responsibility in Oh God:

We need to take responsibility, a lot lot lot more responsibility... there are a lot of people in this screwed up world that are either relying on God to take the initiative or aren't reaping the benefits of their selfless devotion.

I still stand by this. I think there are some people who use religion, God, and prayer as the easy way out of personal and social responsibility, but to clarify, I don't believe that all people who pray to God are shirking liability.

But, what if the model for these kinds of believers was altered to include my 6b realization? Could we have better results? Would it make a difference? Or is it part of the yin/yang balance that maintains some sort of order in this world, so that those of us that want to or choose to go the self-reliant/shared-responsibility route can do so, and we can all feel that we've done the right thing.


PLEASE PRAY FOR LYNN
Whatever your style, your belief, your inclination, send out your energy to the universe or talk to God, but pray for Lynn. I've included links to a few prayers for the sick:

Jewish prayer for the sick
Christian prayers for the sick
Buddhist prayer for the sick
Quaran prayers for the sick

Listen to a hospital conversation between Lynn and me:
Download Neuro Detour - Conversation With Lynn Albert

Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha

Guess what? I'm tired, frustrated, and I got my Ativan! So, this short update is going to be full of wonderful typos, blips, and hopefully nothing i will be embarrassed of tomorrow.

THE JOHNS HOPKINS SHORT-VERSION ADVENTURE UPDATE
My mother and I left this morning at 7AM for my 11AMappointment with Dr. Pardo at Johns Hopkins National Research Center for Transverse Myelitis and got home at 10Pm.

Great Uncle Avrum (who we both call Avrum; he's 2 years older than my mother), who lives in Baltimore, picked us up at the train station and stayed with us the entire day as our familial-happy-to-do-so-chauffeur-with or (mostly) without us-waiting room-sitting-good-conversationalist-support.

SKIP AHEAD AND BACK AND SOMEWHERE ELSE
Right now I'm hungover on Ativan (TONIGHT'S USE: sedation so that my Myocolonus doesn't turn my 2-hour 3-body-part MRIs on "more sophisticated equipment into a 10-hour engagement), enjoying my favorite and healing screwdriver, just finished a few M&Ms (see Friday Night & the 10 Distractions for the familial benefits of M&M®s) and my night meds cocktail, which could put a horse to sleep (apparently I am more of a rhinoceros), laying in bed and trying to make sense of the day.

Subjectively, I'm frustrated as hell. I expected to go in there, have the docs say, OK, you have transverse myelitis (TM), your treatment isn't working, let's try X, Y, Z.

Instead, after 10 hours of doc visits (we were almost never left alone) and more tests, and orders for more tests, and more specialists visits, I'm more in the dark (literally...my vision is going in my left eye), than I was before.

Objectively, which I have no capacity for at this moment, my mother and the few and very intelligent friends whom I spoke to this evening felt that this is the right path. That the treatment and repeat treatments that I've been having aren't working, so obviously there's some globally larger issue that needs to be solved. Which is basically, what the docs at JH said. And who better to solve it than the leaders of TM and neurology?

But i love my doctor here. He makes me feel hopeful. He gives quick answers and quick solutions. Unfortunately, none of which seem to be working...as well as I'd like them to...or support the data timeline for a healthy prognosis.

So here's the quick synopsis from a tired-blurry-eyed, subjective, sicko of what the experts at JH are thinking/doing:

1. They will make no absolute diagnosis without all the data (the hospital did not send all of my records)
2. They think my TM is part of larger neurological disorder and immunological disorder
3. The next treatment path, if they verify the TM, will be chemo
4. My current doctor is against this treatment path for women of childbearing age (but who wants to have children with a vision-balance-challenged gimp anyway! :)
5. I need to see a neurological ophthalmologist for my lack of ability to recognize light or color or peripheral sight out of my left eye (I better not need a new prescription; just got fab new glasses). Great...another specialist.
6. i should not be walking around with a permacath extruding from my body as it poses serious infection health risks. Duh.
   
7. I had some super T3 MRI of my brain/Cervical/Thoracic Spine with GAD.
   
8. Results from the new MRIs should be back tomorrow or next week.
9. More blood work this week.
10. The technician was very cute, flirtatious, and flattering, but I hope for my sake i don't have to see him again...there...tho the attention was nice.

Caught the train just as it was leaving Baltimore. Poor mom, had to pay double fare as I slept off the Ativan.

That's it for now. No realizations. No mellifluous writing. Just the facts. But it beats "being in the dark", which I'm about to do with great gladness.

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