Let The Games Begin...

I had the day off from work today, so I spent much of my time making necessary preparations for my weekend STEROID PARTY. I start my three day course of IV steroids on Friday morning. Experience has taught me I must be PREPARED for these events or "bad" things can happen!

First...I went to the grocery store as you can see by the picture. Steroids make me ravenous. So much so I have resorted to eating things in the past I would not feed a rat only because I had no REAL food in my house! I'm still sporting the extra weight I put on from the last round of IV steroids, unfortunately...you'd think that would be enough of a deterrent to keep me from buying junk food, but it's not. And it wouldn't matter if I only bought myself "health food" anyway...I'd just order out for pizza in my daze!

Second...I've got my emergency contact lists printed out just in case I get a bit "loopy" on the roids. Loopy for me has meant anything from sleeplessness for 48 hours to blatant psychotic symptoms. I ALWAYS try to avoid this! And, after all, there ARE drugs that help...I have my bottles filled.

Third...I have a strange (or perhaps not so strange) habit of needing to clean my house whenever I am going to be gone on vacation OR whenever there is a small chance I might be rendered incapacitated. This avoids much embarrassment later on if caring friends (or medics) have to enter my home for any reason...there's no need for anyone to see my laundry basket full of worn undies! And, yes...my mother DID teach me to always put on the "draws" without the holes in them if there's a chance someone might see them, too.

Fourth...and let this be a lesson for everyone...ALWAYS and I mean always shave your legs BEFORE getting that first dose of IV roids if there's a chance you might get loopy, too. I nearly needed a blood transfusion last year when I tried to do this (mostly out of boredom) following a course of steroids that made me "loopy" and sleepless!

Fifth...I've got the Tootsie Pop suckers laying out and ready to go. IV Solumedrol givesme a wickedly nasty taste in my mouth during (and after, too) infusion. It IS important to pack enough to share with your infusion nurse, however. Somehow it's OK for them to have a sucker if you're slurping on one, too!

As usual, I'll try to document the "highly eventful" thoughts that seep through my mind while getting my ROID RAGE on! But just in case I miss a day or two (You think I type mindless blather now? You should hear me on steroids!), might I suggest a great blog read over at:

http://miss_suzy.typepad.com/my_weblog/

Suzy is always good for a laugh or a tear over at "Bliss"!

I'll be sending the canary into the mine shaft first thing tomorrow morning...wish me luck!

Progressive Multifocal Leukoencephalopathy...Try Saying THAT Ten Times Fast...

*%^*?@#+!!! Dammit, JIM!!! AOL (or AOHELL) just lost the blog I spent 2 1/2 hours writing this morning about PML...it WAS a good one, too!

I decided I should take some time and do a bit of research about PML since I so casually mentioned it in the article yesterday about the FDA returning TYSABRI to the market. In the blog you will never read now and I can NEVER recreate (thank you, AOL), I talked about what exactly PML is and why the FDA has their panties in a wad when it comes to TYSABRI and the possible development of Progressive Multifocal Leukoencephalopathy.

I DO know a bit about the disease because of past required study in HIV/AIDS progression. It's certainly not a newly known disorder...People with AIDS (about 5-6%) have developed PML in the course of their disease. Researchers have known about PML for a decade or so. Doctors know the virus that causes PML...they also know it is due to a severely suppressed immune system. They also know it is generally fatal.

I can't recreate the blog I already wrote...I have MS after all! My memory isn't great and I'm a bit fatigued already from earlier writing. Fortunately, I DID cut and paste some basic information into Microsoft Word and saved it with some links to web articles about PML...I did this just before AOHELL decided to have a server problem and lose everything I had already typed in my blog and HADN'T saved just yet!

This is the best I can do for now...you'll have to do a bit of your own research today for more information and if I become so moved to "try" to write about this topic again, you can KNOW I will definitely create it in a word processing program first! Do you suppose the powers that be from AOL will now report me to Homeland Security for my online negativity???

PML is a rare and usually fatal viral infection of the brain. Caused by the JC virus (the initials of the first patient from whom the virus was isolated), PML destroys the brain cells (oligondendrocytes) that produce the surrounding protective coating (myelin) of nerve cells.

The JC virus is common; by middle age approximately 80% of adults have been exposed to it. This virus doesn't cause disease in people with healthy immune systems. However, it remains dormant in the kidneys, bone marrow, or lymph nodes for may years. Researchers believe that once it is reactivated, the JC virus is carried to the brain by circulating B cells. As the words "progressive" and "multifocal" indicate, PML can progress very quickly and it is not confined to only one part of the brain.

PML causes lesions on the white matter of the brain. The symptoms experienced are directly related to the location and size of the lesions. Lack of coordination of an arm or leg, partial paralysis of one side, partial loss of vision, impairment of thought and speech patterns, memory problems, walking or standing difficulties and dementia are reported in most cases. Not all individuals with PML will necessarily experience the same symptoms or with the same intensity.


PML is similar to another demyelinating disease,

multiple sclerosis, but since it destroys the cells that produce myelin (unlike MS, in which myelin itself is attacked but can be replaced), it progresses much more quickly. Most patients die within four months of onset.
Symptoms of PML include mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and, ultimately, coma. In rare cases, seizures may occur.
There is no cure for PML, nor is there currently an effective treatment for the disorder. Treatment is symptomatic and supportive.
The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset.


http://www.ninds.nih.gov/disorders/pml/pml.htm

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy

http://www.healthlink.mcw.edu/article/921450160.html

http://content.nejm.org/cgi/content/short/353/4/369

WooHoo! Sound The Horns!!!!

The FDA just announced yesterday the agency has approved the return of TYSABRI to the market with restrictive use!!!!

httBiogen Idec - TYSABRI® (natalizumab) Information Centerp://www.fda.gov/cder/drug/infopage/natalizumab/RiskMAP.pdf

For those of us with Multiple Sclerosis, this is "mega big-ass" good news! I, for one, have been anxiously awaiting the FDA decision since the other disease modifying drugs have not been too friendly to me.

My neurologist (Dr. She Who Will Not Be Named) assured me the drug would return to the market...she sat on the bigwig advisory board that made the recommendation to the FDA. But because I suffer from a lack of faith, I had resigned myself to the idea she might simply be trying to amuse me by blowing smoke up my arse (so to speak)!

For those of you who are interested, I embedded some links to the FDA press release and the requirements patients and doctors must meet before the drug can be distributed...there's quite a list.

For those of you who just want a "hit" on what this is, I'll simplify it for you here:

Tysabri is a monoclonal antibody which had amazing results in slowing the progression of MS just prior to it being pulled from the market. It's an IV infusion given once a month (which beats the idea of daily, three times a week, or weekly self-administered shots...the current approved methods of treatment for MS). There was only one problem which resulted in its immediate withdrawal from the market last year...It may have killed a couple of people (but no one knows for sure) who developed PML or Progressive Multifocal Leukoencephalopathy, another deadly brain disease.

And as a reminder, there is no cure for MS, only drugs to help slow its progression. For those of us who had poor results from Copaxone or the Interferons, Tysabri represents a glimmer of hope. I'm not going to get all sentimental here and lapse into "hope" talk, however...just bring on the damn Tysabri and let's give it a whirl!!!

WOOHOO!

Darwin May Have Jumped The Gun...

I can go along with the idea there are a few evolutionary similarities between humans and apes, but Darwin never saw MY squirrels before posing his theory! I believe these little yard "varmits" are some of the smartest rodents on earth.

I have always enjoyed feeding the birds (and now the squirrels, too) and watching them flitter about outside my window. I have some of the fattest fowl in town frequenting my yard. I also have some of the best fed squirrels this side of the Rockies!

Over the years, I have tried all of the "deterrents" designed to keep these little rats with tails out of my precious bird feed. I have used squirrel hoods, Alcatraz-like steel containers, giving the squirrels their own feed, and even high-off-the-ground shepherd's poles. Trust me when I say none of these devices work...these squirrels are just too darned smart.

I watched a determined varmint just yesterday shimmy up a 6 foot shepherd's pole and hang precariously with its back feet gripping the one inch diameter pole while its mouth was buried in the feeder. I think even the birds flapped their wings in applause to witness this feat. It was truly amazing.

Today I finally had to call a truce with my little fluffy-tailed foes. I have nothing else left to try in keeping them off the bird feeders and in the trees where they belong. I've given up...they are obviously much smarter than I. They also are far more determined than I am...the squirrels win. They will eat freely and as often as they like from the smorgasbord of bird seed. I'm too tired to keep up the fight.

I DO admire their ingenuity however, when it comes to food. They've got their creative eating down to a science...and come to think of it, so do I! Maybe that's why I'm so tolerant of their behavior. I obviously have more in common with squirrels than I do with apes...

It's The Little Things...

I finally got around to replacing a sensor in the outside porch lamp of my duplex. I know this may not sound like a big deal to most, but it was a REALLY big deal to me!

First of all, I didn't know if it was even a possibility electrically to take apart the lamp and wire in a new sensor...I wasn't trained in electronics, except by trial and error experience. And I have had one too many "errors" in my experience, blowing out fuses, bulbs, and shocking the living hell out of myself on occasion. I wasn't exactly jumping up and down to take on this task. But I WAS too cheap to hire an electrician, so...

The sensor has been burned out now for weeks. Having no external door lighting has made keying the doors to unlock them a blinding event...one I'm sure Helen Keller would have been humored to observe had she been able to "see" my fumbling with the locks!

I've put off tackling this distasteful job for several reasons, but front and center on my list has been my need to pout in my MS. After all, the pain in my arms has seemed unbearable at times, my brain has had difficulty focusing on the simplest of directions, and frankly, I just DIDN'T WANT TO DO IT! That's right...I played the MS Card. I threw the MS Card gimpishly on the table as my excuse not to at least "try" to get this job done and I pouted my way out of it.

Today I was reminded I still am functional and CAN do many of the things I sometimes try to say I can't. The directions were a bit challenging to decipher, but the entire task didn't take more than 15 minutes once I figured out what I was trying to accomplish. My newly installed Dusk to Dawn light sensor is working now without flaw.

I've noticed lately I've been pretty quick to play the MS Card when I'm challenged. It's a nice excuse. It's a necessity at times when I need to say "no" and rest. But some of the time it is simply a means of saying, "I'm too scared to do that", without ever having to say the words out loud.

Thank goodness the Function Card trumps the MS Card on occasion or I'd never leave my house...

Keep Your Hands Inside The Moving Car At All Times...

Well, here we go again! WoooHooo! Another round of IV steroids...

I'm not sure who sold me my ticket on this wild ride called MS, but I think I'd like my money back. Nobody warned me about all the scary turns and the upside down spins. And even though I'm tall enough to ride this ride, I'd just like the operator to shut it down and let me off...it's made me dizzy and I think I may hurl my lunch!

I'm scheduled once again for another round of IV Solumedrol. It seems the MS has simply turned evil on me...it's eating away my brain at a rather rapid pace. Fortunately, aside from the constant pain I have in my upper trunk (which is ENOUGH of a problem), I haven't lost my eye sight, my ability to walk, the ability to control my own urination, or my sometimes "sick" sense of humor. I thought by now the humor part would have at least left me...some days I feel way too fatigued to think anything is funny.

I told my neurologist I didn't "have time" to be sick and I certainly don't "have time" to schedule another 3 doses of steroids. It's been suggested I "make time". So I made time at the end of my work week next week because I will start a six day furlow on Saturday...it was the best I could do, given my busy schedule! And, as I explained so eloquently to my neurologist, what difference will another seven days make REALLY? The damage is being done as I type or quite possibly even while I have slept this past month.

I'm sick of making time for Multiple Sclerosis in my life. I'm sick of it defining my life. Frankly, I'm just plain sick of it. I have things to do, places to go, stuff to attend to...MS will just have to take a back seat this week. Unfortunately, my MS is like a nasty back seat driver...it's been constantly nagging me and critiquing my navigation and steering. And just when I think I've finally got myself going down an open road, it reminds me of a dangerous "bridge out" just ahead.

I'm considering trying to stick MS in my trunk this week. At least until I get to the IV steroid portion of the drive. I suppose a little duct tape and some rope might help...I think I can ignore it for seven days back there. I just hope no well-wisher hears the pounding on the trunk lid and tries to let it out! I bet the fury of MS would really go after me then...

The Year Of The Slug...

I went to see a Chinese acupuncturist and herbalist today. After all, why should Western Medicine have a monopoly on my healthcare! Besides, I haven't exactly responded "favorably" to Western Medicine approaches, so I thought I'd try turning my body into a pin cushion as my next illusive pain remedy and possible treatment for my Multiple Sclerosis.

I actually did pretty well during the treatment, except when the doctor started sticking the needles into my forehead and scalp! This came as a bit of a shock. It stung a little also. I slowly relaxed into the treatment and imagined the needles in my scalp piercing an MS lesion and sending a bolt of lightening into the area. I don't know if my imagery helped or not, but I felt somewhat in control of my destiny for a few minutes.

My friend "E" convinced me to try this new approach...she practices Qi Gong on a regular basis and got me in to see her doctor immediately, who is also the Qi Gong Master she studies under. I was a bit skeptical at first in even making an appointment...after all, I work in Western Medicine healthcare and feel somewhat of a sense of loyalty to the medicine practiced on this side of the world. I had an epiphany however, when it dawned on me I am also skeptical of medical practices and medicines HERE in the USA! I realized I don't have high hopes or trust in ANY practice of medicine, so why not try something a bit more ancient than Prozac.

So far, I don't feel any difference in the pain level in my body today...my annoying friend is still here in my body trying to steal my joy. I have a $40.00 bag of Chinese herbs, which I have been instructed to take 3 times a day for "circulation and arthritis" (at least the herbs seem cheaper than Prozac). It appears even in China one has to remember to take their medicine throughout the day...I'm not keen about doing this in ANY country!

The doctor was nice enough. I didn't understand half of what he was saying because English is a second language to him and Chinese has never been spoken by these Germanic lips. But then again, I rarely understand half of what my English-speaking, American-trained physicians say either, so what's the difference? And this doctor's handwriting in Chinese looked vaguely familiar to some of the scribbles on prescription pads I have seen my American-trained physicians scrawl out.

Perhaps there really ARE more similarities in Eastern and Western medical philosophy than anyone would like to admit...

I'd Blame It On the Lyrica, But...

I've had a peculiar song running through my head today. I'd blame it on the new medication, Lyrica, but since I haven't even started taking it yet, I doubt it is responsible for my musical mind today.

Remember the song from childhood called, "Hole In My Bucket"? The words were something like, "There's a hole in my bucket, dear Liza, dear Liza. There's a hole in my bucket, dear Liza, a hole." I'd sing it for you now, but I'd probably crash your computer.

Today, that song has been sing-songing through my brain, only with the word "bucket" being replaced with the word, "noggin". That's right...There's a hole in my noggin, dear Liza, dear Liza. There's a hole in my noggin, dear Liza, a hole.

I went this morning for yet another MRI as follow up in the Rituxan Study I am participating in. Neither my study neurologist or I are supposed to know the results of any tests done in this study. And if the sponsoring drug company asks ME, I know nothing. Whatever...

My study neurologist "may have" pulled the MRI up immediately on the computer screen...we "may have" accidentally reviewed it together. I "may have" actually wished we hadn't.

New enhancing lesions. Not old ones currently inflamed. New enhancing lesions. The MS continues to roar through my brain. New enhancing lesions even SINCE my MRI the first part of May. There's a hole in my noggin, dear Liza, dear Liza...

Another email with Dr. She Who Will Not Be Named. An email back letting me know she has already spoken by phone with my study neurologist. Another round of IV steroids to schedule. There's a hole in my noggin, dear Liza, dear Liza...

I don't think dear Liza really gives a crap...

Lyrica...The Latest Pharmacy Melody...

My neurologist (Dr. She Who Will Not Be Named) asked me if I had heard of a drug called "LYRICA". I responded in email with a nod of "no", but told her it sounded like a great name for a rock band. She suggested I try this rather jazzy-named drug for the constant pain in my body...I told her I'd think about it.

The above conversation occurred via email approximately 3 weeks ago (don't get me started on modern technology and medicine!). My MS pain has NOT improved on the Neurontin ("Morontin", for those of us who have taken this drug and discovered the lovely dumbing side effect it has), so this week I emailed Dr. She Who Will Not Be Named and humbly begged her to deal me some "LYRICA" to try...she responded quickly and decisively as always and left me a hidden baggy of "samples" at her front desk office. I slid them under my jacket like a trained addict and went slinking out to my car with the stash (oh, if the drug companies only knew the amount of revenue they are losing on their sample program...but then again, if they can get you "hooked" on their doctor's office samples, you HAVE to buy their product!).

My sample bottles of "LYRICA" are sitting in my bathroom unopened...the warning label lists all kinds of potential side effects, so I've decided it might be best to try the "LYRICA" when I have a day off from work. After all, I wouldn't want to flap my arms like a chicken or run the risk of bursting out in song at an inopportune moment at my place of employment (those AREN'T actual side effects of "LYRICA"...I just don't want to take any chances!).

I'm also extremely apprehensive about taking a drug with such a bizarre name...not that most drugs aren't called something completely moronic. Take for instance, the sleep aids...Restoril, Sonata, Lunesta...such lulling and comforting names. Kind of makes you want to run right out and get you some of it so you can be "cradled" to sleep!

Pharmaceutical companies spend MILLIONS of dollars just on the development and marketing of their BRAND names of drugs...not the research and development of the drug itself, but the MARKETING of the product. And we the people of the United States line up in droves at our physician's offices just to get our hands on some of the "good sh*t", the "product", the "stash", which the drug companies are peddling...those cutely named products to make us feel good.

Pregabalin...would YOU buy a product called "Pregabalin"? Probably not. Pregabalin is the generic or chemical name of "LYRICA"...not nearly as sing-song a name as "LYRICA"...not nearly as "cute" a name as "LYRICA". Pregabalin doesn't inspire me to run out and write a tune or burst into song. Pregabalin doesn't comfort me. Pregabalin doesn't instill the notion all will be well if I just gulp the pill down twice a day. Pregabalin doesn't inspire "hope" my pain might be relieved if I just turn my soul over to the product.

"LYRICA"...the sound of the name "LYRICA" makes me just want to chill out, listen to some smooth jazz, and forget my pain. If I can tear myself away from Yanni, Sade, and Barry White later this week, I'll let you know the outcome...

Sometimes You Just Gotta Jump...

In 2004, I took a very special and long overdue trip river rafting down the entire Grand Canyon. It was a trip I had always wanted to do "someday", but never seemed to find the money or the time to make the trip.

After being diagnosed with Multiple Sclerosis in April 2003, I started looking more closely at my "Roundtoit" list...that illusive list of things to do when I finally got around to it. It seemed ever so important to make this river rafting trip because my physical future had suddenly become such an unknown. A year later in May 2004, I found myself pontooning down the mighty Colorado River with 13 other adventurous passengers! It was truly a trip of a lifetime.

One of my most memorable experiences on the trip was climbing on slippery rocks behind a large waterfall and crawling out onto a two story ledge overlooking a very cold pool of deep, desert water. Our guides told us if we "wanted to feel a thrill" we should climb out on the ledge and jump...there were only four of us brave enough to tackle the challenge.

I remember standing precariously out on this ledge and looking down into the green pool, wondering if I might have truly lost my mind to try something so foolish. I almost turned back until I realized trying to climb down the rocks behind the waterfall might be impossible without slipping and cracking my skull open. I was on the "edge" with a decision to make: jump or risk falling.

As I stood on the ledge, my traveling companions began to cheer me on. I thought to myself, "Sure you chickens who haven't jumped have the courage to egg ME on!" I stood there rather frozen and uncertain what to do.

At some point, in what was probably only a matter of less than two minutes, I thought about why I was there on this ledge in the first place...I thought about why I was in the canyon in the first place. I was there because MS had given me permission to stop living for the future and BECOME my future. I was there because MS was teaching me to live in the "now". I might never again stand on this ledge and have the opportunity to contemplate this decision.

Suddenly I felt no fear. I was acutely aware sometimes you just gotta jump and trust all will be well...sometimes it's important to step outside of the fear and experience the moment.

In a moment of triumph and courage, I yelled out, "Here's to MS!" and I plunged feet first into the icy cold water below.

Sometimes you DO just have to jump and trust there will always be something or someone below to catch us...

How Hard Could It Be To Just Remove It???

I know this may sound a bit drastic, but I'm giving GREAT consideration to removing my right arm...if I only had the right tools to do this myself! How hard could it be, really?

Oh sure, I know you think I've finally lost my mind. And perhaps I have...but what I'd really like to "lose" is this useless right arm that's been hanging at my side and causing me pain! I'm just sick and tired of my arm feeling "pained and tired".

Now before you go calling the mental health authorities (which would be MY office anyway!), just hear me out. I don't think it's an unreasonable request to want to remove something that is causing so much discomfort and becoming virtually useless (except for that minor "balance" thing the arm provides). And I KNOW I'd function much better without this constant, gnawing pain. It's just right now, the pain in my right arm trumps the pain in my left, so I feel I have to choose one of them to lose...and I choose the right one. I'm left-hand dominant.

Yes, I've tried the pain medications, the seizure medications, the heat and ice applications, the biofeedback methods, the immobilizing techniques, the "ignoring it" stance...none of these things has brought me any relief thus far. And I've grown weary waiting for any change on the horizon...I'm just not a very patient person!

I think we SHOULD be allowed to remove appendages that serve no purpose or have become useless over time. We should be allowed to unscrew them and attach a new, better working model...too bad most of them don't come with a detachment mode! I'm rather surprised some doctor hasn't already developed this procedure. After all, it IS the Western culture dream to live forever...removable appendages would certainly help facilitate this type of longevity.

I suppose the major drug companies would be against removable appendages or replacement appendages, however. Considering the money they are raking in on products like Viagra...yeah, they'd DEFINTELY block this.

Memorial Day Weekend...Barbeques, Picnics, Oh Yeah...And War and Death...

I'm sitting chilling out this weekend with a dear friend visiting me...she's still asleep this morning after staying up WAY past her usual "I'm in my mid 40's" bedtime. We had a wonderful evening last night of laughs and remembering stories of our past experiences together. Memories are a good thing...after all, it IS Memorial Day Weekend.

Most of the time, I am not really one to celebrate "traditional" holidays...I tend to be working on the major holidays because, as we say in my profession, "Mental illness knows no holiday or takes a weekend off". But this particular weekend holiday fell during my schedule of regular days off, so here I sit trying to remember what it is I am supposed to be "celebrating".

Usually Memorial Day is a time I try to pause and reflect on the lives of my deceased ancestors...most of my immediate family fall into that category, so it's never difficult to find one to remember or share stories about. None of my immediate family has died during war or while in the service, which I believe was why the original holiday began...to memorialize fallen soldiers who died in the line of duty.

If I were to poll most Americans today, I'm sure many know the true origins of this weekend holiday, but few are actually "celebrating" the reason it exists...we're too busy hitting the Memorial Day sales at the department stores or barbeques with friends or perhaps boating on a hot, sunny weekend. And besides, how does one "celebrate" death anyway? Who among us REALLY wants to spend our three day weekend "remembering" something so horrible as a soldier dying in a war?

Shortly after the United States military began bombing in Iraq, I remember watching my TV screen in horror as images of destroyed buildings and blood stained streets captivated our media coverage...it was gruesome...it was gut-wrenching. I remember seeing an Iraqi mother holding her dead child in her arms and wailing while she rocked the child's lifeless body. I had to look away.

I sat down later in the day and wrote a poem...it's not a good poem, but it does say exactly what I felt in that moment as I watched a mother mourn over her dead child...a mother innocently traumatized by a war she neither started nor probably participated in. I later watched mothers in the USA mourn the deaths of their children in uniform on national TV...soldiers who died in the "line of duty".

Perhaps today during our weekend barbeques and gatherings with family or friends, we can ALL take just a moment to pause in our freedoms to remember not only the USA soldiers who have died, but ALL causualties of war...after all, we are ALL somebody's child somewhere...and ALL who have died in acts of war should be remembered. It is the right thing to do...lest we forget the value of ALL life, and not just our own.

Sunday In Baghdad

"It's Sunday in Baghdad,"

I hear the news anchor say

As I watch the sun set

Outside my window

And rise on the TV screen

While images of bombs exploding

And plumes of smoke curl aimlessly

Before my eyes.

My view of this war

Is sanitized by propaganda

And my own complacency

As I watch, but remained removed,

Seemingly untouched in my mundane,

But free existence.

I wonder about the mothers

Who have lost their children

In the name of freedom or resistance,

Randomly dying from starvation,

Or explosions, or "friendly fire,"

As they say in military terms.

And I think how different we are

As people and cultures,

Yet the same in our tears

That fall to mourn our dead children.

I can't wonder about this too long, however,

For I fear the knot in my throat

Made of guilt and fear and outrage and sadness

Will choke the comfort I feel

As I watch this thing called "war"

As though it is merely a spectator sport.

I am drawn like a magnet

To form a solid opinion,

Either for or against

One team or another

To lessen my own discomfort

Pulling violently inside me,

But I cannot chose.

I cannot move.

Because movement resembles

Responsibility

And that action seems too overwhelming.

There goes another

explosion in my heart

And on my TV screen again.

It's Sunday in Baghdad

And someone's mother is crying.

Somewhere.

Why DO We Wear Clothes Again?...Oh, Yeah. That Adam & Eve Thing...

I just spent half a day doing laundry. You'd think I have an entire room converted to a closet to hold my wardrobe based on that fact, but I don't. Ask any of my closest friends...they know I HATE to go clothes shopping. They can tell by the tattered look of the rags I wear. My closet consists of jeans, T-shirts, and work clothes. That's it. Nothing special in my small closet in the bedroom.

So why did it take me a half day to do laundry? Frankly, I have no idea! Perhaps I had accumulated several items to be washed because I just completed a 7 day stretch of work...that's right...7 days in a row without a day off. So there was no energy or time to wash clothes during my employment marathon. But I can't imagine I even HAD seven complete outfits to wear each day, given my closet choices!

It's not the actual washing or drying of the mountain o' clothes I mind. Good grief! A machine does both. All I am required to do is load the rags into one or the other machine, turn some knobs, and pay the electric and water bill. That's really not a big deal, except the bill paying part of course, which doesn't ever coincide with "laundry day".

What I REALLY loath about "laundry day" is having to iron, fold, and stuff the crap back into drawers or my tiny closet so I can take them out the next day and proceed to muck something up again! Who thought of this ritual? I'd like to blame it on the male species, but it's way too complicated of a task for THAT to have been the source.

I wonder if Adam & Eve ever had to wash, dry, fold, and put away their fig leaves? Just wondering...

Taking A Decompression Break...

Note the picture...although not exactly a self portrait, it's close enough. My hair feels as though it is standing on end and my last myelinated nerve is shot. I need a decompression chamber with perhaps IV valium flowing freely.

Since I don't have the chamber or the IV, I suppose I will have to resort to my often forgotten practice of reflection and meditation...focusing on another topic besides my angst. But since my attention span is also a bit short, I'm just resorting to reading some of my favorite words of wisdom over and over and over...at least until the words make better sense to me.

One of my favorite pieces of writing was done in the 1200's by a man born as Giovanni Bernardone...you may better recognize him as St. Francis of Assisi. His words persist in our culture today, not because of his roots in the Catholic faith, but because his message is timeless. And one need not be of any "faith" to gain a deep appreciation for his words. He simply asks for assistance to be a better person...something I'm looking for myself right now:

Lord, make me an instrument of Your peace.
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
Where thereis sadness, joy.
O, Devine Master,
Grant that I may not so much seek
To be consoled as to console;
To be understood as to understand;
To be loved as to love.
For it is in giving that we receive;
It is in pardoning that we are pardoned;
And it is in dying that we are born to eternal life.

Seattle's Black Cloud...

It's raining again in Seattle...go figure! Gone are the hot and sunny days we've been having, which were abnormally warm and a true fluke this time of year in the Puget Sound region. It just wasn't "right" to have that kind of weather here in May. It made Seattlites way too joyful and seemingly content...and it screwed up my inevitable depression!

I say "inevitable depression" because I was wondering WHEN the reality of my current medical circumstances would finally hit home in my tiny, little, (albeit lesion filled) pea-brain! I have been having rather content swims in the River De Nile for several weeks now, keeping myself oblivious to my current situation: My Multiple Sclerosis has become aggressive.

Yesterday, I had a total melt down at work. I did some controlled yelling at the "Big Boss"...that's right...I had a hissy fit! I hit a professional wall and waltzed into the "Big Boss's" inner sanctuary office and spewed my venom. It felt good...temporarily. I was completely red-faced, jaw pulsating, and threw up my complaint all over her neatly organized desk. In simple descriptive terms, my complaint was this: "You are asking me to do more work with less and I can't".

Now, that is a pretty scaled down version of my venomous complaint, but the simplification is very accurate. And besides, details here are unimportant. My point is I "hit the wall" and I splatted very hard at work...I'm not one who tends to "splat" at work. I'm not one who tends to "lose it" at work. I'm not one to bare my fangs and spew venom at someone who signs my paycheck. Yesterday's display of festering anger was not like me at all.

"You are asking me to do more work with less and I can't". That simplified statement, in itself, is quite benign. But as I lay awake this morning pondering my actions of yesterday, I became acutely aware of just how pervasive that statement is in my life right now and WHY I have been avoiding looking at it recently.

In my little microcosm of the world, I have now been told my "MS is aggressive", which means it is spreading in my brain and spinal cord at a more rapid pace. That's why the chemotherapy has been suggested, the monthly steroid infusions are on the table, the IV Tysabri (if it ever returns to market) is looming in the background, and why my symptoms of my last relapse are hanging on as if they've found a new home. My body is not able to keep up right now with the demands I place upon it. It is weak, fatigued, pained, and not the reliable source of strength I have based 41 years of blind faith upon. I am now asking my body to "work more with less" and it is quietly (and sometimes screaming at me) telling me it can't.

I am a big believer in the psychology our outer worlds are simply a reflection of our world within...what we project into the world is what we are inside ourselves. It's not a big leap to conclude my venomous anger at work is simply a projection of the anger I have about my physical situation. I am asking myself to do the impossible: "to work more with less". I can't. And it pains me and depresses me to admit this to myself. I feel somehow my body's failure is a reflection of my total being. I am defective somehow. I simply can't "rise to the occasion" and push myself harder to accomplish what used to take little effort. I feel tremendous loss and sadness with this reality and realization.

Perhaps this rain in Seattle is a good thing...the drops are cleansing the air and washing the dirt from the pavement. It is necessary to have periodic showers and dark clouds...nothing will grow without the rain. And I will not grow without my tears...

The Value Of A Statistical Life...

I was listening to NPR the other day and the talk show was about how insurance companies, auto makers, risk management companies, etc., calculate how valuable a human life is. The average cost/value of a human life is $6 million dollars...ONLY $6 million dollars. You and I are valued at $6 million dollars.

What this statistical value means is this:

Your insurance company, job, etc., weigh this $6 million dollar value figure into their cost analysis of what monetary loss they would incur if you were to die and it was their fault or they had to pay out for the loss of you (or anyone else who might die in a similar circumstance). If the cost of providing you with safety equipment which might lessen your risk of death on your job is more than that $6 million dollar figure, chances are you are NOT going to get that equipment! This is called "Risk Management". And here we all thought "Risk Management" was actually in place to PROTECT us on the job...well it's not...especially if that protection costs more than the statistical value of YOUR life!

I did a little research on this topic and was horrified and shocked to learn ALL COMPANIES who deal in any type of potential loss of human life use this statistical figure. Your car maker, your local transportation system, the makers of household products, etc.

For those of you who actually UNDERSTAND (and perhaps even ENJOY math/statistics...you're just plain sick if you do!) statistical calculations, I am including some cut and paste info for you to peruse. I'd say "enjoy", but that just sounds sadistic...

The Value of a Statistical Life

Theory
The value of a human life is the willingness to pay to avoid the end of life. It can be conceptualized as the following. Suppose utility (happiness) depends on income and health: U(H,Y), where U(.) is utility, H is health and Y is income.

The value of a change in health risk (from perfect health) is:
U(pH,Y) = U((1-p)H,Y-WTP)
Where H represents perfect health and p is the probability of good health, 0

The willingness to pay to avoid risk increases with the level of risk, DWTP/Dp > 0. The value of life (VL) is for someone in perfect health is:
U(H=1,Y) = U(H=0,Y-VL)

Methods
Market Studies
Information from people's behavior when faced with risk can be used to measure the WTP to avoid risk.

The hedonic price method uses information on people's job choices to estimate WTP for job risk changes. The WTP for a risk change is equal to the wage differential generated from labor markets

WTP = -dW
where -dW is the wage differential (dW <>

The value of a statistical life can be estimated from hedonic wage-risk studies. Suppose that a wage differential (dW) is associated with a job fatality risk change (dR) in the following way:

W = a - b*R

where a and b are parameters. The effect of b on W is negative because increases in risk leads to decreases in the wage rate. Suppose R = .0005; this means that there is a 5 in 10,000 chance of a job fatality (this is a high job risk, higher than for the mining industry). If there are 10,000 workers, there will be 5 random deaths. To reduce the job risk and the number of deaths by 20% (from 5 to 4) would make R = .0004 and dR = .0001. If dR > 0, then dW <>

-dW = b*dR = b*.0001

If the estimate of b = 2500, then WTP for dR is $2500*.0001 = $0.25. The individual is willing to accept a wage $0.25 lower per hour for the lower job risk. The annual value of the risk change is $0.25*2000 = $500 (assuming 2000 hours worked per year). With 10,000 workers, the value of a statistical life (VSL) is VSL = $500*10,000=$5,000,000.

Contingent Valuation Studies
Market studies are limited in that only those risks experienced by people can be used to infer the value of a statistical life. Stated Preference (contingent valuation, ranking, etc.) surveys can be used to estimate the benefits of policies that place people beyond the range of their choice making experience (eg, changes in job risk not experienced, new life saving drugs).

Consider the following survey question which asks for the willingness to pay for a private good (adapted from Johannesson, Johansson, and O'Conor, 1996).

"In the U.S., about 1 in 5000 people die annually in traffic. A possible measure to reduce the traffic risk is to equip cars with safety equipment, such as airbags. Imagine a new type of safety equipment. If this equipment is installed in your car, the risk of dying in a traffic accident will be cut in half for you and everyone else travelling in the car. This safety equipment must be tested and serviced each year to make sure that it is working correctly. Would you choose to install this safety equipment in your car if it will cost you $A per year?

[YES or NO]

Where A might take on values of $30, $150, $300, $750, $1500, or $3000 for each survey respondent. A similar question which asks for the willingness to pay for a public policy might read (again, adapted for Johannesson, et al.)

"In the U.S., about 1 in 5000 people die annually in traffic. The number of deaths can be reduced if we devote more resources to preventing traffic accidents. We can, for example, straighten out turns, build safer crossings, and increase the supervision of traffic. Imagine a program that cuts in half the risk of your and everyone elses risk of dying in a traffic accident. Are you willing to pay $A per year more in taxes on your car for this program?

[YES or NO]

With both questions, the value of a statistical life is equal to the average willingness to pay divided by the reduced risk of death (dR). In this case, the reduced risk of death is (in general, the reduced risk of death is equal to the number of lives saved divided by the affected population).

If the average WTP = $500 and dR = .0001 (1 in 10,000), then VSL = 500/.0001 = $5 million.

Additional Readings
Fisher, Ann, Lauraine G. Chestnut, and Daniel M. Violette, "The Value of Reducing Risks to Death: A Note on New Evidence," Journal of Policy Analysis and Management, 8, no. 1, pp. 88-100, 1989.

Differentiate the value of a statistical life based on the level of risk. Find that estimates of the value of a statistical life range from $1.6 million to $8.5 million.

Johannesson, Magnus, Per-Olov Johansson, and Richard M. O'Conor, "The Value of Private Safety Versus the Value of Public Safety," Journal of Risk and Uncertainty, 12, pp. 263-275, 1996.

Estimate that the value of private and public safety measures to reduce by half the number of fatal traffic accidents is about $712 and $590 (1996 dollars). The implied value of statistical life is $8.9 million and $7.4 million, respectively.

Viscusi, W. Kip, "The Value of Risks to Life and Health," Journal of Economic Literature, 31, no. 4, pp. 1912-1946, December 1993.

Finds that estimates of the value of a statistical life range from $0.07 million to $4 million in labor and product market studies (1990 dollars).

Poetry Break...

My Choice

Inside me,
Freedom waits patiently
Upon the doorstep of struggle,
Knocking softly and calling my name.
I can scarcely hear
Its drumming rap
On the door of my soul.
Drowned out by
All the noise inside
Of deadlines and plans,
Of fear of the unknown,
Of day to day demands,
Freedom’s persistent whisper
Becomes obscure.

But still, it waits,
It calls for me
To simply open the door.
To step outside
Of all that is known,
Of struggle I have worn,
Like a poorly fitted cloak
Wrapped tightly around me
For false protection.

Freedom waits for me
Upon my doorstep,
Unjudging, unimpeded,
With outstretched arms.
Freedom welcomes me
To shed my skin of discord
And step across the threshold,
Liberating my soul
Into a world of
Unrestrained Joy.

Forgive my lack
Of attention to you.
I must answer my door
And go outside.
I have dismissed
Freedom’s knock
Long enough.

Assumptions Make An "Ass U Me"...

My dear friend, Suzy, over at
http://miss_suzy.typepad.com/my_weblog/
provided me with some thought inspiring words the other day. She was blogging about friendships and her counselor, who suggested she ASK her friends what their understanding was of her disease. I must say, until I read that in print, it had never occurred to me to ask anyone what they understood about my Multiple Sclerosis. I have grown an expert at just “assuming”.

We’ve all probably heard the age-old pun of what assuming really does, right? The answer is, it makes an “ass u(of) me”, which is so blatantly true. Assumption is one of the most narcissistic things I practice. When I assume someone can read my mind or my situation, I am assuming many things about them that may not even be remotely true. I am “assuming” I somehow know more or best.

Well, I’ve taken my friend Suzy’s words to heart and I’m going to start ASKING my friends what they understand about my MS and how it affects me. I won’t assume they just “know”. And perhaps in the process of asking them, I will begin to open up dialog and give permission for them to ask ME how I truly am.

One of the things I’ve grown to understand over the course of the past 3 years is this: I don’t always understand my MS, my symptoms, or why I have them one day and not another, so how can I possibly expect someone looking into my world to have mastered these concepts? And many of the comments I have found so offensive in the past have really been said out of fear or wanting to help, not harm. Comments like, “But you look so good”, or “I have a friend who has had MS for years and it really hasn’t been a problem for them”, are just a few of the statements that used to cause me to launch at someone like a wildcat.

Today, I believe these seemingly inflammatory comments are really said because people lack education about Multiple Sclerosis and they are also just as frightened of my disease as I am. I have had to educate myself about MS from square one 3 years ago, so why do I assume everyone else shares the same knowledge I now do? And I am not without fear of my disease, so why should I assume my friends wouldn’t be equally as frightened?

I’ve decided in today’s blog, I am going to tackle a bit of this education and sharing process by providing some basic information specific to me and my MS. My experience isn’t true for anyone else but me, and it is the only experience I have.

MY MS 101

Multiple Sclerosis is believed to be an autoimmune disorder that attacks the central nervous system or brain and spinal cord. It is not contagious, even though to date no one knows what causes it. I don’t have it because I partied too hard in my early adulthood, drank too much, or did anything else YOU also weren’t doing right along beside me! There is no cure for MS, only drugs that may slow its progression. I will always have MS and will die WITH MS, but not necessarily FROM it. My course of disease progression is unknown and unpredictable, but as of this month, it has become more “aggressive”. I have several brain lesions and a spinal lesion in my neck, which cause me a wide variety of symptoms on any given day. Generally speaking, EVERY day I have a degree of fatigue, which has worsened over the past 6 months. I’m not sleepy, my muscles are just tired all the time and sometimes cause me coordination, stamina, and walking problems. If I tell you I am “tired” it means I need to rest, not sleep. If I get too overheated, my symptoms can worsen very quickly, but will usually lessen if I can cool off. My vision in my left eye will blur if I overheat also, so if I ask you to drive, you may want to do so for your own safety! I currently have intense and agitating pain in my left shoulder and arm, which gets more and more intense as the day progresses. I wake up with this pain and I go to bed with this pain. If I seem more irritable than usual, it may be because I am in pain. Some days I feel better than others, but on the days I feel like crap, I may have to cancel plans we had previously made together. Please don’t take this personally. Some days, I barely am aware I have MS or any disability at all. You can remark how “good I look”, but don’t assume my MS is gone. It is not. It becomes invisible sometimes, but it will never go away. And external looks can be horribly misconceiving. I won’t judge your outer cover if you don’t assume to know mine. Sometimes if I walk too far too fast, my left leg gets heavy and numb or I stumble. It’s OK to laugh at me or with me when this happens because I find it funny, too. As a matter of fact, the more you laugh with me, the more comfortable I feel. These things ARE funny to me, but understand they may not be to my other friends with MS…we each have our own tolerance level! Every morning for the past 2 ½ years, I have awakened with a stiffness in my lower calves called “spasticity”. I have to stretch my calves every morning BEFORE I get out of bed or I will possibly fall flat on my face…I’ve done this falling act too many times in the past to NOT remember to stretch! I take 13 pills a day to keep myself healthy and hopefully feeling well. Most of these pills (except for the vitamins) have side effects, which I don’t like, but I take them anyway. I have other symptoms that may or may not be related to my MS like patches of baldness, chronic diarrhea, and sleep apnea, that I also live with on a near daily basis. When I am in a relapse or having new symptoms, my neurologist gives me IV infusions of steroids. These cause me to sleep very little and eat like a ravenous dog. They also cause me to get really crazy and think all kinds of paranoid thoughts. Once I am off the steroids, all those symptoms go away and I return to my baseline “crazy”. Because my MS has become more “aggressive”, my doctor has suggested I take a strong chemotherapy agent to get the inflammation down. I have chosen not to do this because I don’t want to lose my hair, become chronically nauseated, or use up my lifetime limit of the drug just yet. I am awaiting the hopeful return of an IV medication called Tysabri that the FDA yanked off the market last year because it was possibly linked with causing a disease called PML. This disease killed 3 people who were taking IV Tysabri. If it is reapproved in June, I will be taking it because I feel the risk of PML outweighs the benefits. I will then have to have an IV infusion of it every month. I spend a lot of my time trying to suppress my fear about my MS, but I will admit to you now I am very afraid. If I don’t talk to you about my fear, it’s because I can’t or choose not to, but it is OK for you to ask me questions about it or my MS. On my good days, I don’t wake up wondering if this will be the day I go blind, become paralyzed, or lose my ability to control my bladder. On my bad days, I think about those potential problems immediately when I wake up. I am always very thankful to discover these things haven’t happened to me yet. I often don’t tell you how badly I feel or admit I have anything wrong at all because I don’t like to hear people complain everyday how sickly THEY feel and I assume you don’t want to hear this from me either. I don’t want or need your sympathy, but I DO want your continued friendship and support. You are my family and what you think and feel matter deeply to me. I need youto tell me if you see me functioning way off base or behaving in ways that cause you concern. We are, after all friends, and I know our friendship can withstand any rough weather together. I may have Multiple Sclerosis, but no amount of lesions or disability will ever change how important you are to me.

Women Who Run With...Chihuahuas?...

There was a great book written in the 1990’s by Dr. Clarissa Pinkola Estes, a Jungian psychologist, called, “Women Who Run With Wolves”. The preface of the book was about strong women in our society, specifically of the archetype of the “Wild Woman”, the female in touch with her primitive side and able to rely on gut feelings to make choices. It was a wonderful book, which hit the stands during the boom of the self-help era and pointed the way for all of us women to let loose and run with the wolves, so to speak.

I thought it was a great book then and I still do now. But I’ve had to scale down my own expectations of myself lately in relationship to my inner Wild Woman. MS is a teacher of this scaling down process and if you don’t learn it the first time around, it will just keep picking away at you until you get it!

If I were to write a similar book about my life and my viewpoints now, I’d have to call it, “Women Who Run With Chihuahuas”. I’m not gung ho about the whole running with wolves thing these days…I like the idea of just being able to keep up with the little dogs. I’m no longer greatly invested in eviscerating or getting in touch with my “primitive side”.

I’m not poo pooing this process for all you wolf pup women out there. I’m just saying for me, I’ve grown into a wise, old canine and I rather like hanging out with those energetic and loveable lap dogs…they’re not nearly as hard to keep up with and they keep me young. They also take more naps than wolves.

I believe these days I may rely on my “gut feelings” more than ever when I am making choices…I rely on my gut and my experience. I simply don’t have the time or the energy to ponder much (nor the memory to recall what it IS I’ve been pondering!). I don’t want to be bogged down with the uncertainty of making choices…I just want to “know” and then to choose.
I think my Wild Woman is still inside me somewhere…she’s just growing into a more even-tempered Crone…a Wise Woman who makes decisive choices based on her own needs and not necessarily the needs of the “pack”. I suppose that’s not really wolf-like at all nor is it necessarily Chihuahua-like. It’s probably closer in nature to a cat!

Women Who Run With Felines…nope, it just won’t work as a book title…

I Have The Best Friends And Coworkers In the World...

I was sitting at work this evening, after yet another long and tiring tour of duty, when two of my coworkers (who I am also thankful to call friends) mentioned to me they have enjoyed and continue to read "Brain Cheese". I have to say, I was a bit shocked by this revelation because I was quite certain the novelty of my ramblings had surely worn off by now!

My favorite male buddy, who I'll call Roger (because that's his name), says to me, "No, I read it because it's kind of like a check in. I wonder what's happening in your world today." Now those may not have been his exact words, but I have memory problems so they're close enough.

Then my dearest friend, T, (I don't call her by her full name, so "T" is who she will be known as) the woman who's social life I live through vicariously because she HAS a social life, says to me, "Yeah I read it too, every night when I get home from work." I was double shocked.

There are so many things in my life I take for granted on a daily basis...so many physical things and comforts I have grown used to...so many niceties and daily expectations I have built my life around. I am slowly realizing many of the things I once thought were a "given" aren't and many of the things I thought I had to struggle to obtain come much more easily if I cease to struggle. It is easy for me to become so wrapped up in my MS, my job, and my personal fears that I become oblivious to the things that really matter most in my life.

If Multiple Sclerosis has taught me anything, it has been the importance and value of friends...MY friends in particular. Without my friends, I would be lost on open waters, sailing without a course. It only takes little moments like tonight to remind me where my support comes from and how my friends are the "rudder" for my ship...always there, steering me quietly underwater, and asking little in return.

So today's blog is a salute to "all y'all"...my sweet, silly, serious, cantankerous, intelligent, caring, dramatic, sarcastic, wonderful and dear friends! And YOU know who you are, so names are not important here...thank you for all you bring to my life, my work, and my soul. I would surely be lost without you...

In Another Galaxy...

Science experts say space is one of the last frontiers yet to explore. I beg to differ…NASA hasn’t called me yet to take a look inside MY brain and there seems to be a lot of unexplored “space” in there!

I’ve been wracking my brain (full pun intended) for the past several days, trying to figure out how such tiny, little lesions in all that white matter mass of my brain could be causing such pain and problems in my life right now. By comparison, you’d think half my brain was nonfunctional, given the extent of the pain I have been feeling in my left shoulder and arm. But the majority of my brain remains intact…apart from a few inflamed areas seen on my MRI (yes, these pictures ARE of my brain…for several thousand dollars, you TOO, can have your own set!).

There is still so much we do not know about the human brain or even why it works in the first place. And since most of us only use a small percentage of all that spiral mass inside our skulls, it’s a wonder we even know as much as we DO about our central nervous systems. We know the “brain” keeps us alive and regulates all of our bodily functions. We know if our brains are injured, we may likely see a vast variety of changes in how we perceive and interact with the world. But what we don’t know is why some people can injure their brains and show little effect, while others (in the case of Multiple Sclerosis) experience devastating disability from tiny, little dots of inflammation…it’s just one of life’s many mysteries.

They say it is our higher functioning brains, giving us the ability to reason, which separates us from other animals. But what we still do not understand is what part of our brains and logic constitute “who” we are…who we believe ourselves to be and what provides us with our understanding of concepts like mind vs. emotion and spirit/soul vs. body.

There is STILL so much to explore and know…and I don’t believe NASA can really assist us in this process. We may never “know” so many important answers, but we will always know the questions. We will always search for meaning and understanding in our quest to discover what truly establishes our essence of life.

In the meantime, I’m still perusing over these MRI pictures and trying desperately to locate my ears and eyes…I think they’re in there somewhere!

Hell Hath No Fury Like A Hormonal Woman...

I’ve decided it’s about time someone open up the floor for a discussion about menstrual cycles and Multiple Sclerosis. After all, nobody else seems to be talking about it that much, so why not? And, as for you men out there who might be reading this, get over it! We have to suffer through YOUR commercials on erectile dysfunction (or the catch word phrase, “ED”) every night on the television…I imagine you can make it through a blog about menses just this one time!

This morning I awoke to find myself in a pool of blood, looking something like Sissy Spacek in the movie, “Carrie”…only it wasn’t pig’s blood covering me, but my own menstrual blood! At first, I thought I’d either been shot in my sleep or hemorrhaging from my aorta. Yes, my thinking does get quite dramatic in times of stress or disorientation!

The next thing that crept into my mind was, “Great. Now I’ve ruined a nice set of 600 count Egyptian cotton sheets!” I crawled out of bed and carefully made my way into the bathroom, wondering why this gush was happening to me now? After all, I haven’t had this type of period flow since I was a hormonally distraught teenager. Why now?

As I sat soaking my body and my ruined set of sheets in a warm tub, my mind hazily drifted from thoughts about peri-menopause, Multiple Sclerosis, hormone replacement therapies, steroid use and action on menses, and a host of other topics specifically related to the female body. I realized I knew nor had I read very little about thesetopics and decided this morning was a good time to do a bit of research to educate myself. Perhaps with a little knowledge, I might be able to avoid another menstrual lahar and spare myself some sleep and early morning drama in the future!

I assumed there would be quite a bit of material to peruse on the Internet about this topic…after all, more women than men are affected with Multiple Sclerosis and we ALL have menstrual cycles at one time or another in our female lives. I thought surely there have been many studies and abstracts written on this subject to enlighten me. Girl, was I wrong!

Every brief abstract and reference I found on the subject of MS and Menses all acknowledged there was little information about the topic and MORE STUDY WAS NEEDED. I began to wonder why if every scientist out there was shouting more study is needed, why on earth “more study” is not being done? I certainly have ideas about why we lack research on this topic, but I won’t bore you with my political/feminist/male-dominated world/Eve as temptress/”the curse” ideas…you get the picture already anyway!

Most all MS scientists and doctors accept there IS some correlation between hormonal fluctuations in women and the role these hormones play in influencing symptomology in women with Multiple Sclerosis. Doctors know pregnant women often see a remission of MS symptoms during pregnancy, but there is a higher potential “rebound” of those symptoms to reoccur just months after child birth. Most all women with MS know and/or experience a worsening of symptoms during their premenstrual phase, whether this is “scientifically” substantiated or not.

Having been someone who has never had a predictable and “normal” menstrual cycle in my life, MS has given me some crude ability to now predict my periods with a fairly accurate measure…I GET AN INCREASE IN MY MS SYMPTOMS 3-5 DAYS BEFORE MY PERIOD. I experience an increase in fatigue, pain, weakness, sometimes difficulty walking, and spasticity in my calves. It’s my signal I’m either headed for a major relapse or about to experience a menstrual period…I always “hope” for the period, actually! This has happened like clockwork every time I experience a hormonal shift, monthly or not. When I was a teen, I suffered horrible PMS…now I just have the other “MS” with my periods…

This isn’t rocket science, folks…so why ISN’T more “science” focusing on these matters, especially topics such as menstruation and Multiple Sclerosis? Why can’t we seem to get past our insecurities and embarrassments in this society and do some meaningful research in areas that affect purely the female gender? How long must we as women suffer at the hands of the biblical Genesis and take a back row seat to male fertility and “ED”? Who among us really gives a crap if “he” can get it up when we’re bleeding like a sieve from our peri-menopausal periods or completely disinterested in sex because of our MS???

In an effort to share with you what small morsels of information are available about hormones, menses, and MS, I am including a few links and plagiarized information from various sites to assist you in your own information gathering. Since no one seems to be too interested in this topic, I’m not too worried my cut and paste plagiarism will attract much attention…

FROM THE NATIONAL MULTIPLE SCLEROIS SOCIETY SOURCEBOOK:
http://www.nationalmssociety.org/Sourcebook-Menstrual.asp
MS is a disease that is more prevalent in premenopausal women than in other groups. While it is not entirely clear what effects hormonal changes have on neurologic symptoms in MS, it has long been observed that certain other disorders such as epilepsy or migraine headaches are worse just before and during the menses.
Many Report Symptoms Worsen Within a Week of MensesTo see if there is, in fact, a correlation between neurologic symptoms in women with MS and the menstrual cycle, researchers at an MS clinic distributed a questionnaire to female patients. Of the 149 women with MS who answered the questionnaire, 70% reported that their MS symptoms seemed to change at a regular time in their cycle. Most of those who reported a change indicated that the change, usually involving a worsening of their symptoms, occurred within one week of onset of menses. Weakness, imbalance, fatigue and depression were the symptoms most frequently reported to worsen. Other self report studies have replicated these data. More recently, MRI studies done in women at different times of the menstrual cycle indicate that disease activity as measured on MRI may vary according to differing hormonal environment.
These findings have all come from small, uncontrolled studies, and much more research is needed to characterize the relationship between MS and the menstrual cycle.
***************
http://www.mscare.org/cmsc/images/pdf/07Houtchens%20.pdf
***************
The Premenstrual Period and Exacerbations in Multiple SclerosisAnneke Zorgdrager, Jacques De KeyserDepartment of Neurology, University Hospital Groningen, The Netherlands
Address of Corresponding Author
European Neurology 2002;48:204-206 (DOI: 10.1159/000066166)

Abstract
The aim of this study was to assess whether an association exists between the premenstrual period and exacerbations of multiple sclerosis (MS). The subjects were 56 premenopausal patients with relapsing MS and a regular menstrual cycle. Data over the previous 2 years were gathered from a structured MS database and a comprehensive questionnaire. 42% had exacerbations starting in the premenstrual phase. Within this group the proportion of premenstrual exacerbations was significantly higher than in the remaining period of the menstrual cycle, and in 45% all exacerbations had started during the premenstrual phase. There was no relationship with the premenstrual syndrome, and there was no protective effect of oral contraceptives. Our results suggest that the premenstrual period triggers exacerbations in a subgroup of females with MS.

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ASK THE EXPERTQuestions answered byRonald Barentsen, MD, PhD, NetherlandsChairman of the OBGYN.net Menopause Advisory Board

Question: Can you provide me with any information or known contraindications for a lady with multiple sclerosis prescribed hormone replacement therapy?

Answer: There is an extreme shortage of literature on this topic; but the current concept is that MS is no contraindication for HRT. The only relevant abstract in Medline comes here:Author: Sandyk R.Institution: NeuroCommunication Research Laboratories, Danbury, CT 06811, USA.Title: Estrogen's impact on cognitive functions in multiple sclerosis.Source: International Journal of Neuroscience. 86(1-2):23-31, 1996 Jul.Abstract:It has long been suspected that hormonal factors contribute directly and indirectly to the etiology and pathogenesis of multiple sclerosis (MS). The susceptibility of MS is higher in women than in men and women are even more susceptible to hormonal influences when onset occurs at an early or delayed age. Pregnancy has a short-term favorable effect on the course of the disease but there is an increased rate of relapse during the post-partum period. In addition, women often report premenstrual exacerbation of their symptoms with remission during menses. These findings suggest that in women estrogens may exert a stabilizing effect on the clinical manifestations of MS. The role of estrogens is supported also by observations of a higher incidence of cognitive impairment in women than men with MS. A 50 year old man with a remitting progressive MS experienced profound deterioration in cognitive functions during withdrawal from estrogen therapy which was initiated for the treatment of amenorrhea. Improvement in cognitive functions occurred shortly after she restarted therapy with an estrogen/progesterone preparation and was maintained during long term therapy. Serotonin (5-HT) mechanisms have been implicated in memory functions and estrogens modulate these functions through an interaction with 5-HT2 receptors in the cerebral cortex and limbic system. It is suggested that estrogen withdrawal induces impairment in cognitive functions through dysregulation of 5-HT2 receptor activity and 5-HT neurotransmission. These findings suggest that estrogens have a beneficial influence on cognitive functions in MS patients and that hormonal supplementation might be advised in menopausal and postmenopausal MS patients for the prevention of cognitive deterioration.