Wednesday, May 31, 2006

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...

Monday, May 29, 2006

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...

Sunday, May 28, 2006

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.

Saturday, May 27, 2006

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.

Thursday, May 25, 2006

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...

Wednesday, May 24, 2006

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.

Tuesday, May 23, 2006

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...

Monday, May 22, 2006

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).


Sunday, May 21, 2006

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.

Saturday, May 20, 2006

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.

Friday, May 19, 2006

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…

Thursday, May 18, 2006

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...

Wednesday, May 17, 2006

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!

Tuesday, May 16, 2006

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
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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.

********************

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.

Monday, May 15, 2006

It's A Heat Wave!..

Break out the fans and blend me a Margarita! It’s supposed to hit record highs here in the Pacific Northwest/Seattle Metropolitan area and it is ONLY May! And “The Bush” says there’s no proof of global warming…

Living in an area of the USA where no one has air-conditioning in there home because it isn’t needed, can pose a difficult task in staying cool when temperatures soar. Summers in the Pac Northwest are generally mild, ranging in temperatures from the mid 60’s to 80’s. It’s just usually not HOT here, except for a few weeks in July and August. And hunkering down in a movie theater in the summer is the best place I have found to suck up semi-free air-conditioning and entertainment at the same time!

When my personal body temperature rises, I find several of my underlying MS symptoms become more predominant. For instance, my fatigue increases, I tend to get a blurring of my vision, and I have muscle weakness in my left arm and leg. These symptoms will usually decrease or go away completely if I can cool off and relax a bit.

The technical term for a worsening of MS symptoms causes by increased body temperature is “Pseudo Symptoms” because the symptoms mimic those one might begin to see in a real relapse. The difference is once the body temperature is lowered, the symptoms will spontaneously remit/go away, whereas in a true relapse, the symptoms will stay even if the body temperature is decreased.

So for those of you just learning about the wonders of Multiple Sclerosis, you may be asking, “Why does heat/increased body temperature affect MS symptoms?” This a good question and there are only theories why this happens. I’ve done a bit of research into the matter and will share some of what I found with you now:


Heat adversely affects nerve transmission and makes MS symptoms worse. Here's why. Signal transmission in the nervous system is helped, up to a point, with an increase in temperature, approximately up to our normal 98.6 degrees (degrees Centigrade). Push your temperature any higher than normal and nerve transmission slows. That is one reason why you feel fatigued in the heat or with a fever. It has been found that in axons that lack myelin as in MS, this temperature transmission curve is pushed to the right a bit, that is, conduction velocity is optimal actually a little shy of 98.6 or 37 degrees Centigrade and at above normal temperatures, conduction drops off even more precipitously.

So what does that mean? In simple terms, it means if you heat up the insulation around your nerves, the signals won’t go as fast as they usually do to the places they usually go to make things happen or the signal gets interrupted altogether. And if your nerves are running slower, YOU are going to run slower because the nervous system is the part responsible for conducting the current from your main fuse box to your light switches and so on.

Weather and the seasons can adversely affect daily living in many people with multiple sclerosis also. The greatest number of relapses or flare-ups occurs in the coldest months (January and February) as well as in the warmest months (July and August). This is because both the extreme cold of winter and the extreme heat and humidity of summer can worsen existing symptoms as well as produce new symptoms of MS.


Sometimes a temperature change may produce a temporary improvement in one symptom and, at the same time, a temporary worsening in another symptom. For example, in one person with MS, a hot bath resulted in the improvement of numbness and walking, but caused a temporary blurring of vision in the left eye. This is called a "dual response" to temperature. In another kind of "dual response", heat and cold may produce worsening of existing symptoms as well as the development of new symptoms.

There have been several studies over the past few years and decade that have looked into the effects of temperature changes and cooling in people dealing with Multiple Sclerosis. Here is a list of several research studies and summary quotes:


Effect of Cooling on Physical Performance in Multiple Sclerosis
Dr. George Kraft, principal investigator, and Alan Alquist, research scientist, University of Washington MS Clinical & Research Center, Seattle, Washington (completed in 1996). Summary Quote:


“Subjectively and objectively, we noticed remarkable gains [for those with] heat-sensitive MS [in their] ability to perform repetitive activities. We believe this may be an important finding for MS patients for it is repetitive motor tasks that elicit extreme local and central fatigue in MS patients.”


Enhancement of Cognitive Processing by Multiple Sclerosis Patients Using Liquid Cooling Technology: A Case Study
L.D. Montgomery, R.W. Montgomery, Y.E. Ku, Lockheed Martin Engineering & Sciences Company; and NASA Ames Research Center, Moffett Field, California (completed in 1997).Summary Quote:


“This case study indicates that ‘cooling therapy’ may be used to temporarily improve the cognitive processing of MS patients.”


Temporary Improvement of Motor Function in Patients with Multiple Sclerosis after Treatment with a Cooling Suit
Jergen Kinnman, MD, PhD; Ulf Anderson, MD, PhD; Ylva Kinnman, MD; and Lil Wetterqvist; Department of Neurology, Länssjukhuset, Halmstead, Sweden, Journal Neuro Rehab, 1997, 11, pp. 109-114.Summary Quote:


“After cooling, ten out of fourteen ambulatory patients and all six wheelchair patients were improved in at least one motor test.”


Cooling Garment Treatment in MS: Clinical Improvement and Decrease in Leukocyte Nitric Oxide (NO) Production
E.A.C. Beenakker, MD; T.I. Oparina, PhD; A. Hartgring, MS; A. Teelken, PhD; A.V. Arutjunyan, PhD; Dsci; and J. De Keyser, MD, PhD; Academisch Ziekenhuis Groningen, The Netherlands, Neurology, 2001, 157, pp. 892-894.Summary Quote:


“Active cooling was associated with a decrease in mean leukocyte nitric oxide (NO) concentration by 41%... NO is a diffusible gas that can enter the CNS and block conduction in demyelinated axons through a mechanism that is not completely understood... Although several other mechanisms may be responsible for the beneficial effect of cooling in MS, results raise the intriguing possibility that a lowering of leukocyte NO production may play an important role.”
This study was supported by a grant from MSAA’s affiliated organization, Multiple Sclerose Internationaal, Amsterdam, The Netherlands.


A Randomized Controlled Study of the Acute and Chronic Effects of Cooling Therapy for MS
S.R. Schwid, MD; M.D. Petrie, RN (University of Rochester, Rochester, New York); R. Murray, MD, Jennifer Leitch, RN (Rocky Mountain MS Center, Englewood, Colorado); J. Bowen, MD, A. Alquist, PhD (University of Washington, Seattle, Washington); R.G. Pellegrino, MD, PhD, Maria Dawn Milan, RN (Institute for Neurology and Neuroscience Research, Hot Springs, Arkansas); Adam Roberts, Judith Harper-Bennie (Multiple Sclerosis Association of America); R. Guisado, MD (Center for Neurodiagnostic Research, San Jose, California); B. Luna, MS, Leslie Montgomery, PhD, Richard Lamparter, MS, Yu-Tsuan Ku, MS, Hank Lee, BS, Danielle Goldwater, MD (NASA Ames Research Center, Moffett Field, California); G. Cutter, PhD (AMC Cancer Research Center, Denver, Colorado, independent biostatistician); Bruce Webbon, PhD (NASA program manager and principal investigator), Neurology, 2003, 60, pp. 1955-1960.Summary Quote:


“Although other studies have demonstrated that continuous cooling can promote improvement in neurologic signs over several days, no other study has systematically assessed the long-term benefits of daily cooling, as patients would typically use it. We found no evidence that cooling effects changed over time. Given the lack of side effects observed in this study, modest improvements demonstrated using objective measures of motor and visual function, and persistent subjective benefits, cooling therapy could be considered as a potential adjunct to other symptomatic and disease-modifying treatments for patients with MS.”


So, as I watch the mercury rise on the thermometer outside today (rather a joke because mercury isn’t USED anymore in thermometers due to it’s toxicity), I’m going to sip some icy beverage and perhaps frighten my neighbors with my pasty, white legs in shorts. It’s not about fashion, people…it’s about STAYING COOL!

Sunday, May 14, 2006

IV Steroids...How Do I Love Thee? Let Me Count The Ways...

The sun seems brighter, the flowers are brilliant, and I awoke this morning with NO pain! Ah...the wonders of IV steroids!

Except for an awful taste in my mouth, not sleeping all night due to insomnia, a bit of fatigue in my left leg and arm, headache, and of course AGITATION, I must say I feel GREAT! Even if it only lasts for today, I am so thankful to have a moment of reprieve from the MS pain I have had for over two months. It is odd to me now how I have been able to simply adapt to it...having the pain gone for the day, I am having difficulty understanding HOW I adapted to it! I almost feel "normal", whatever that is.


It is amazing how we MSers DO adapt to the constant changes and disabilities life throws us because of our disease. Until today, I had forgotten the many processes I encountered the past two months LEARNING to live with the constant pain. I changed how I walked, how I sat and for how long, my handwriting, carrying objects with weight, and learned to use (and over use...remember the Tennis Elbow debacle!) my right hand and arm. I did this because I HAD to in an effort to continue status quo. We ALL adapt to these bodily changes...or we stop functioning.


Just for today, I am enjoying a pain free moment and it feels soooo wonderful! I can relax my tense facial muscles and my body as a whole and hopefully be less irritable and kinder this Mother's Day. I may even sit outside and enjoy the spring flowers...thank you, thank you to the inventor of IV Solumedrol!


Happy Mother's Day dear friends...

Saturday, May 13, 2006

Steroids At Club Med...

Ok, I really wasn't at a beach today getting my IV infusion of Solumedrol. And there were no martinis or Corona beer served, no spa massage, and no water front eye candy to gawk at. BUT...I have to say I have never been treated kinder than I am when I go to my local hospital infusion lab (this time in the outpatient cancer center) for steroid infusions!

Over the years of working in the healthcare industry and becoming a chronic patient of it's services, I have become apathetic about the type of patient care being delivered these days. I have grown to expect long waits, inaccurate information, harried and curt staff, medication errors, and a sundry of other negative problems that have cropped up since healthcare became more focused on business and less on the art of compassion. I am frankly quite "shocked" when I am NOT treated with some level of disregard when seeking services and I always try to write a letter of thanks to those who go above and beyond average to treat me with kindness. Today was again, one of those "above and beyond" days at my infusion appointment.


Since I changed to my new neurologist this year, I also had to change hospitals where I get other services. Other than the major faux pas of FORGETTING to scan my brain while in MRI a few weeks ago, I have been quite pleased with the care I have receive at Club Med (and I can't hold one lame diagnostic technician accountable for my overall rating of services hospital-wide!).


I returned today to the Cancer Institute to get my IV steroid "blast" (as my neurologist so gently called it) in the infusion lab, a specialized unit in Club Med (if I revealed the true identity of the hospital in question, you'd ALL be lining up to go there and I might no longer be considered "special"!). My dear friend, EB, met me at the Institute to keep me company while I infused. We did wait a bit of time to be taken back to the infusion lab, but once there, my Steroid Party commenced.


My infusion nurse (I am under gag order not to mention her by name) settled me into a private room, which looked more like a combination living room and treatment room. I was seated in a comfy arm chair and asked several health history questions. She actually seemed interested in my answers! Then she started my IV, but not the usual "poke and dig" method I have been subjected to at other times...she used a tiny bit of local anesthesia to numb my delicate arm before surgically striking my vein with precision. EB could not watch this part, hid behind the curtain, and threatened to vomit if she had to watch...this was highly entertaining!


Once the "blast" was begun and running liquid gold into my arm, Miss Nurse asked me what kind of sandwich I wanted for my lunch? I politely told her I would only be there for an hour and thought even I could wait to eat a bite later (it was only 11:30AM at this point). She assured me if I didn't accept the sack lunch, Club Med would just end up throwing it out and, "Wouldn't you LIKE a sandwich to help take the taste of the steroids out of your mouth?"


I looked at EB. She's quite thin and looked as if she could use a few carbs or protein, so "we" settled on a turkey sandwich bag. Miss Nurse then asked if I was comfortable and, "Would you like a pillow or anything?"


I advised her there was no need for a pillow because, once again, I'd only be gracing their service for about an hour. I then told her she may want to consider stopping the comfort measure offers or I might choose NOT to leave once the hour was up...this could prove to be a problem for her if I got too comfortable!


She asked if I would like anything to drink with my sandwich (I was beginning to sense where all my insurance money was being funneled to and, frankly, I liked it!), and I replied, "Water will be just fine."


"Ice or no ice?" she asked,and then looked at EB who was sucking down an iced coffee for the thrill of caffeine, and asked HER if she would like anything. Who KNEW the service I could get at Club Med?!?


I have already planned a vacation to Texas in October to spend time on the beach. Perhaps I may want to reconsider my options and spend theweek at my local Club Med? Sure, there's no beach, but the service is excellent! I wonder if my insurance would let me book a week there in advance?...

Friday, May 12, 2006

I Don't Do Stupid Well...

I admit it. I am losing brain cells. I have lesions and holes in my brain. Yes, I have MS. But I just don't do stupid very well at all!

I don't know if it is middle-aged brain or MS brain causing my most recent "brain farts", but these blips on my cognitive screen have become most annoying. Today, I was in an important meeting at work and the brain farts began with no warning. I was trying to speak about an important issue and I experienced severe word finding difficulty. Being someone who always has a ready comment (even if it's unsolicited!), this was quite embarrassing. I struggled several times to recall and say very common words and concepts and I simply couldn't. "Stupid" had set in and I was spellbound by it.


I can adapt and change quite easily to the many curve balls MS has been throwing at me lately, but "stupid" is just not one I know how to swing at. I'm pretty sure I struck out today. My coworkers were their usual supportive selves, but I still felt waves of embarrassment and frustration.


I suppose I should qualify some of my day by saying I had to work the night before until midnight and return to work at 8:00AM today for the dreaded "staff meeting". I WAS tired. I WAS bored in the meeting. My mind was focused on what I was going to have for lunch by 10:00 o'clock. Maybe "stupid" crept in because of these things.


Whatever it's cause, it was most annoying. I think the hardest changes I deal with in my struggles with Multiple Sclerosis are shifting my thinking and my self-concept to accommodate the many "surprises" MS brings me. Cognitive changes are sort of my last area I am able to find acceptance in for myself...I loath the idea my mental clarity is failing me. I despise the notion my average intelligence brain is now performing with less and less capability. I can accept the outward physical changes such as gait problems, numbness, pain, etc., but the last area I consider "mine" is my thinking and my speech. All I can say is, thank goodness MS has not robbed me of my sense of humor! If THAT goes, I'm screwed!


I actually just got home from work again after my very long 16 hour day. I forgot I had taken the bus into town at the wee-hour-crack-of-dawn this morning and couldn't find my car in the parking garage. I panicked thinking it had been stolen only to later realize it was never there in the first place. My coworkers and I had a good laugh over this one, too, when I figured out my dilemma...I am becoming the office Brain Fart Mascot...perhaps I'll have T-shirts made with my title and picture on them to avoid confusion. I am experiencing enough of it myself anyway...confusion, that is!

Wednesday, May 10, 2006

My Neurologist Tells Me My Head Lit Up Like A Christmas Tree...

She says to me, "You've got active disease occurring", and I say, "Prove it".

She shows me the MRIs and says, "Look here, here, and here. Oh and here, here, and here."

I make a joke about having a lot of brain tissue I'm not using at the moment, so perhaps all of the damage that is occurring doesn't really matter much...after all, I can still walk, talk, and pee on my own.


She takes me back into the exam room and starts talking "options", mentioning Novantrone, Steroids, etc. I'm no dummy because I know Novantrone is used to treat aggressive MS...my eyes glaze over like a toad shutting it's inner lid. I don't hear too much after that, but I know I continue to talk and defend my faulty brain.


"No, I don't want to take Novantrone if it can cause leukemia and heart failure. Besides, what if I need it later on and I've already used up my life time limit of the drug? No, I don't want to 'try' Rebif just for kicks. Avonex made me deathly ill after a year of interferon. I have to be able to go to work. My lifestyle can't accommodate being sick from shots all the time. When will Tysabri be back on the market?" These are my verbalizations.


"There's a 1 in 1,000 chance you could develop PML and die from the Tysabri. Plus, you'll have to have a spinal tap before I would put you on it," she says. My eyes further glaze over.


I start thinking to myself, "What if my insurance (which is why I have to be able to function and go to work...to keep my insurance) won't cover Tysabri? What if it kills me? All of these choices just plain suck! I can't surrender to this. I don't know what to do.

"OK, I know Tysabri could kill me, but I could be hit and killed by a bus with the same odds. This is what I choose if it ever returns to the market for use again. Aren't they predicting sometime in June?" I question, as I know my neurologist was one of the doctors who sat on the FDA review panel.

"You need to be hit again with a blast of steroids, then we'll wait and see about the Tysabri in June," she says.


"OK," I say in agreement. We banter jokingly back and forth about stupid issues and I schedule yet another IV infusion of steroids.


We wave each other off down the hall and I know she has no idea my insides are screaming out in fear. I don't let her see the tears running down my cheeks.

Tuesday, May 09, 2006

National Nurse's Week, May 6th - May 12th...Have You Hugged A Nurse Today?!?

In honor of my many sisters and brothers across the country celebrating (yeah, right!) National Nurse's Week, I give you:

Subject: Nurse's Hell . . .


A doctor died and went to hell. He was met at the gate and asked to stand in a room and wait for Satan. After 4 hours Satan finally appeared. The doctor was incensed. Poking his watch he said, "How could you keep me waiting so long! I am an important man! I'm a doctor."

Satan replied, "Doctors are a dime a dozen here in hell. But I'll tell you what. Since you had to wait so long, I will give you a choice of which part of hell you will spend eternity in."

Satan took the doctor down a hall and said, "Here. I'll be back shortly. You can choose between door # 1 and door # 2. I'll be backand you can let me know where you want to be assigned."

The doctor opened door #1. Inside was an Intensive Care Unit. Blood was spurting, alarms were sounding and patients were coding. A man in the corner extubated himself as a woman in the center fell out of bed. The doctor quickly shut the door and said, "My God, I really am in hell. I'd better check door #2."

Behind door #2 was a medical records department. Unfinished charts stretched for miles with notations about delinquent H&P's. Message slips from managed care case managers filled a swimming pool sized bin, all marked urgent. Inside, physicians were dictating as sweat poured off their brows. The doctor shut the door and said, "I don't know which one is worse."

Then he noticed another door off to the side. He opened it and inside was a tidy nurse's station. The nurses were all young and beautiful. They were busily making rounds with doctors and calling to obtain lab and xray results. They poured coffee and served donuts purchased with their own money. One doctor complained of a stiff neck and a nurse rubbed it for him. "Now this is more like it," the doctor thought as he closed the door.

Satan came strolling back down the hall and said, "Well, which have you decided on, Door # 1 or Door # 2?"
The doctor replied, "Actually I would like to go behind door # 3."

That's not an option," said Satan.

"But that's what I want!" said the doctor.

Satan replied, "I'm sorry but you can't go in there. That's nurse's hell.”

Sunday, May 07, 2006

A Letter To My Mother

Dear Mom,

With Mother's Day quickly approaching and the bombardment of ads for gift shopping invading my life, I have been thinking of you quite a lot lately. I decided perhaps writing you a letter on the Internet might be the best way to reach you these days, since even AT&T has not developed a long-distance plan that can reach beyond the grave! Yes, Mother...I AM still irreverent.


I thought you might want to know I'm doing the best I can to take care of myself these days. You unfortunately died before I was diagnosed with MS, but I know you always worried about my health. It appears the Multiple Sclerosis may have been lurking in the shadows even before you passed, but neither I nor the medical community knew it was stirring inside my body. When the doctors finally told me it was there, I really wished you had been around for me to tell because I felt so scared. I know you probably would have given me the advice you always did, which was to "do what the doctors order and tough it out"...it just would have been a comfort to hear you SAY that.


I have been "toughing it out" for the past three years and it hasn't always been easy, Mother. You used to always say, "God never gives us more than we can handle", but there have been times in the previous three years I have wondered if you really knew what you were talking about. It's been hard for me to accept "God" would ever inflict this type of disease on anyone.

This coming week, I am to see my neurologist, who I already know is going to tell me the MS is progressing...my study doc already whispered these words in my ear. And it's not rocket science to figure out some of the symptoms of my last relapse are not going away, indicating "something" has changed significantly.

I'm scared again, Mom. I don't want confirmation of what I already know. I also know THAT sounds somewhat crazy, but hearing it confirmed by the neurologist makes it real and I'm not keen on reality right now. (I know, "straighten up and fly right"...I hear you.)


You used to always tell me, "this, too, shall pass", whenever something difficult or bad happened in my life. I know there is logic in your wisdom, but holding onto that logic these days is hard. I wish you were here to tell me that in person or over the phone...if I close my eyes hard enough and remember, I can almost visualize you saying it..."this, too, shall pass".


There are so many things that happen every day in my life I regret not being able to share with you. Sometimes I wish I would have spent more time with you, called you more often, listened to you, and told you I loved you whenever I could. I suppose we both did the best we could while we could. I have a feeling none of that really matters now to you. You just want me to be happy, healthy, and whole, without regrets. I suspect that may have been all you really wanted for me when you were alive, too.


I miss you, Mom, and I hope wherever you are these thoughts and feelings will reach you in the afterlife. I love you.


Happy Mother's Day,


Your youngest daughter