Monday, April 30, 2007

Am I Just Getting Dumber, Or Has "Science" Lost It's Edge?...

OK, maybe you shouldn't answer that question in the blog title! I'm afraid there are those of you who will choose the "dumber" response...

I have been reading the latest "research" information about the changing demographics of Multiple Sclerosis. It seems researchers are noting a drastic change in the ratio of men and women diagnosed with MS. Just for "chits and giggles" I'll post some of the research report here, but I can NOT resist placing my OWN editing comments within the article (sigh):

-- Although women have typically been much more likely to be diagnosed with multiple sclerosis than men, that gap has widened significantly in the past 60 years, new research shows.(Mkay..."research also shows there has been a dramatic gender population shift as well. Females are very close to a 50/50 ratio with males in the world population statistics and ALREADY outnumber males in the United States. In 2004, females outnumbered males by nearly 6 million--149.1 women to 144.4 million men. This may dismay you women still swimming in the dating/gene pool!)

"We saw a marked increase in the number of women diagnosed compared to men. It started at two-to-one and is now four-to-one," said study author Gary Cutter, a professor of biostatistics at the University of Alabama at Birmingham School of Public Health. (All right...I KNOW I'm neither genius nor brilliant for that matter. But, Puleeze! More women are in the workforce now than in any other point in history. Having a job means having INSURANCE. Having insurance means BETTER HEALTH CARE. And having better health care means access to DIAGNOSIS. Is this REALLY a gender issue at all?)

The finding, said Cutter, "gives us clues to the etiology of the disease, and researchers can look for things that affect females more than male." (Try friggin' hormones, you idiots!...Oh, wait...that WAS my hormones speaking there...)

Some of those factors might be the use of birth control pills, earlier menstruation, rising rates of obesity, (I think the rates of obesity in men are currently higher than women right now, but I'd have to do "research" to find those statistics!) more women smoking, and later ages at first pregnancies.
Multiple sclerosis (MS) is an autoimmune disease that affects the central nervous system. Symptoms of the disease vary widely from person to person, and may include fatigue, dizziness, pain, vision problems, difficulty walking and bladder or bowel dysfunction, according to the National Multiple Sclerosis Society. (Isn't it nice how the NMSS gets quoted for that line over and over and over and...yeah. We GET the symptoms. How about a cure?)

About 400,000 people in the United States have multiple sclerosis, and worldwide, the disease affects about 2.5 million people, according to the society. The disorder is generally first diagnosed in people between the ages of 20 and 50. ( me out here. The NMSS has been quoting this "400,000" figure for over 10 years. So if the figure remains the same, but more WOMEN than men are now diagnosed, does this mean the MEN are just dying off while the women continue to GET MS and live longer??? Somebody help me out with this data please...)

For the current study, Cutter and his colleagues gathered data from a large database called the North American Research Committee on Multiple Sclerosis (NARCOMS), (I happen to like NARCOMS and I participate in their biannual reviews...but it's purely VOLUNTARY. I imagine more women than men would take the time to answer "test question-like" material, thus resulting in a higher female count. But that's just my opinion...and it comes from all the CHEATING males in high school and college that wanted to copy off my papers rather than write their own!) which includes information on almost 31,000 people with multiple sclerosis. Each volunteer provided semi-annual information regarding demographic and clinical information about their disease.

Almost three-quarters of the study population were female and 93 percent were white. (Don't even get me started here on the poverty/wage disparity between whites and other minorities. We "crackers" have more stuff like computers, etc., to fill out on line surveys!)

The researchers found that the ratio of women-to-men having the disease increased by about 50 percent each decade. The changes were more pronounced in people diagnosed at earlier ages, according to the researchers.

Cutter is expected to present his findings Tuesday at the American Academy of Neurology's annual meeting in Boston. (Dr. She Who Will Not Be Named is at this meeting as I type...I DO hope she is learning something!)

"This rapid change suggests that it's not just the disease behaving as usual," Cutter said. "It is unfortunate, but it is an opportunity and we can use this information to learn what directions we ought to pursue."

"This is an interesting phenomenon, and I'm not sure anyone knows why it's happening,' said Nicholas LaRocca, associate vice president of Health Care Delivery and Policy Research for the National Multiple Sclerosis Society.

He said the real question is, "Are more people being diagnosed with the disease or are more people actually developing the disease? In all probability, probably both things are operating." (The voice of friggin' reasoning...and he's FROM the NMSS!)

"It's always possible that in the past there may have been a tendency not to diagnose MS because clinicians couldn't offer a treatment," said LaRocca. "It could also be something biological that is increasing the number of people getting MS. Nobody knows if there is such a factor at work."

"This type of observational study -- while interesting and provocative -- probably raises more questions than it answers," LaRocca noted. (I am impressed. LaRocca probably won't be employed at the NMSS much longer) we know ANYTHING new from this? Nope. I just thought I'd bore YOU with the trivial data I've been reading!...

Sunday, April 29, 2007

Occupying My Nauseated And Fatigued Self...

I'm really not sure what the motivator is behind making all of these videos...I guess it is better than using my forces for evil and darkness...LOL

Saturday, April 28, 2007

Confessions Of A "DOWNSIZE ME" Addict...

I had a bite of chocolate cake...there...I said it.

It was innocent enough at the time...a friend and coworker dropped by today and brought me a lovely chocolate cake from a well-known bakery. It was a small and decorated piece of wonderful chocolate cake that read, "Chemo Sucks" on top of it. She only stayed briefly and was on her way...I was nauseated as the Zofran was beginning to wear off. I thought about freezing the tempting and inviting morsel (for the time when DOWNSIZE ME would be over, which IS in two weeks!), but I knew I might be prone to sleep walking (not really...but I have blamed sleep walking on various other crimes!) and eat the whole thing!

So, I cut the cake in half and called my neighbor who readily took the chunk off my hands, and prepared to freeze the remaining half. And that's when it hit overwhelming urge to swing a fork into the remaining piece and indulge my fatigued and nauseated self! I did it...I took a bite of that cake, felt a surge of unwanted guilt swirling in my already upset stomach, and proceeded to wrap the remains for the freezer.

I now feel like a Catholic at confession telling you this many "hail Mary's" do I owe? Or maybe a few push ups would be a better punishment? Except those will have to wait until I'm no longer winded from the chemo when just getting up off the sofa...

( weight loss has leveled off, my blood pressure is continuing to drop ever so slightly, my fatigue is at an all time high because of the chemo, as are my hours of sleep. And that's the DOWNSIZE ME report...)

Post Novantrone Infusion Report...

Considering I am just rolling on 24 hours post infusion of my second bag of Novantrone, I'd have to say I'm not doing "half bad"...I go with "half" bad, because there IS the nasty side effect of fatigue and mild nausea biting me in the shorts today! So...I'm resting.

I put together another "infommercial" for you about Novantrone (below)...and yes...the second to the last frame of urine in the toilet IS MY PEE! LOL And no...the picture has NOT been altered. Radioactive, lime-green truly IS the little and unusual things about Multiple Sclerosis that keep me entertained and occupied...**sigh**...

Thursday, April 26, 2007

I'm Just Not As "Bright" As I Used To Be...

It's true...the MRI proves it! My noggin is not as BRIGHT as it was in November 2006. Seriously...this is a GOOD thing!

I just received "official" word from Dr. She Who Will Not Be Named that my recent MRI showed no new enhancing lesions. Our email conversation went as follows:

SUBJECT: Verdict...

ME: Any MRI pix sent your way and/or a radiologist report? I'm thinking things look improved (at least not as enhancing) and I'd like to commence with the happy dance. Novantrone dose #2 is on for Friday...

Dr. SWWNBN: It looked ok.(none worse for the wear.)

ME: Mkay...could you be just a "tiny" bit more forthcoming with some information?!? What exactly does "none worse for the wear" mean? Impress me with some of that highly trained neuro knowledge...if you dare.
Don't make me have to smuggle my own records out of Club Med...LOL

Dr. SWWNBN: It was a stable exam with no enhancement, no change compared with 11/06 study.

ME: HA! Which one of us gets to take credit for it though? You or me?...LOL

Dr. SWWNBN: Me of course

And so it goes...I'd like to think the Blue Dye #24/Novantrone may have something to do with this good news, but who knows. It's probably still too soon to tell. The important thing is, I currently have no NEW ACTIVE DISEASE attacking my brain...this is a wonderful thing to hear, having gone through a year of HELL with this disease.

The other good news is the fact I am actually FEELING better overall these days as well. When I return to my symptoms journal from the beginning of last year through January, I realize just how badly I was feeling back then and I can compare it to how I feel physically now...there's really no comparison!

Sure, I still have residual symptoms of past relapses that are bothersome...but I can and DO adapt to those changes over time. Like remembering not to look up above my head at airplanes, lest I cause my world to spin in vertigo. If I create that sensation enough, I eventually remember NOT to do it! Or reminding myself to stretch my calves each morning before trying to leap out of bed...if I Swan Dive enough to the floor, I CAN retain the idea I must do this before walking (of course, if I keep hitting my head every time I forget, I might have some "retention" difficulties I suppose...LOL). These are just a few of the things those of us with Multiple Sclerosis "adapt" to...and, it unfortunately or fortunately becomes the NORM.

Whatever the culprit is behind my better health today, I don't really care. SOMETHING is working...whether it is Dr. SWWNBN's "voodoo" medicine, changes I have made in my lifestyle (I AM still without caffeine, too...pray for me!), or the planetary alignments...I will take this stabilization any way I can get it. Well, maybe not "any way" I can get it, but at least HOW I am getting it right now.

Have any of YOU seen changes for the better or stabilization of your MS? Is there other "good news" out there I should be reporting? I'd love to hear from you about this...what helps, what works for you, where you are at with your MS...

How Might My Life Have Been Different?...

Today was one of those oddly surreal YOU ever stop and pause in your life and ask yourself, "How did I get here?" I'm not talking concretely "how did I get here" as in where I am standing in that moment...but "How did I get here?" at this current space, this current place in time? What if my life experiences had been different, where might I be finding myself instead? I know...maybe too "deep" of a post for a Thursday morning, but it IS what is on my mind! LOL

As I stood today amidst the chaos and craziness of a patient's family dynamics, I found myself drifting in and out of thought, wondering why I was standing in this stranger's living room trying to sort out the current mental health crisis that was falling apart around me. I began to wonder why I ever chose to do the type of work I do...I began to wonder what "path" I took that has gotten me to where I am today...I began to ponder how my life might have been different had I turned left instead of right during my life's journey.

When I was in junior high and high school, my life's ambition was to become an English teacher and also teach Phys. Ed...I also wanted to become a writer. I played basketball in college and, although too short to matter much, I was fast and methodical and dreamed of playing basketball for a living...there weren't any women's professional basketball teams that I knew of at the time, so my thinking was more of a "pipe dream". Somewhere along the way to an English degree, I changed course abruptly and went into nursing. In nursing school, I chose my focus profession, which was psychiatric nursing. I have been practicing in the psychiatric field for the past 21 years. Today, I am an officer of the court, doing psychiatric evaluations for commitment and also crisis outreach in my community...I do this while riding the ebbing and flowing tide of Multiple Sclerosis.

Certainly my profession has shaped and also jaded my outlook on life...I deal with life and death every day...this tends to have a huge impact upon one's psyche. I also deal with the unspeakable, the bizarre, the unusual, and the deviant of society...I have trouble "relating" sometimes at parties because I have no work humor I can share and my life is quite different than someone with two kids, the mortgage, a dog, and teaching school (or any other profession, for that matter). I live in a constant world of silence about what I do for a living and the people I interact with that I call "patients"...most people have no concept for what I do in my job (and most don't want to!), nor can they relate to the things I've seen.

Today is just ending as one of those days where I let myself wonder: How might my life had been different if I HAD become an English teacher, if I DID have two kids and a dog, if I DID write for a living, or if I had NEVER seen or experienced the things I see and do on a regular basis in my work? How might my life have been different if I had never been diagnosed with MS?

Purely speculation, I know, but sometimes taking this look can bring deeper appreciations as well as other choices in life. How might YOUR life have been different if?... Care to share in the comment section?...

Wednesday, April 25, 2007

Is It Helping?...

I don't have much time today for a long-winded post (aren't YOU the fortunate ones?!?), but I wanted to respond to ADINA'S comment in the previous post regarding my experience with NOVANTRONE. Her question was generalized and surrounding my belief if the the drug was helping me or not. So here's my response:

Since I have only had one dose of the blue juice, it is really too soon to tell if there has been a clinical benefit from the drug. I am still awaiting Dr. She Who Will Not Be Named reply regarding my most recent my humble medical opinion (cough, cough), it DOES appear there has been a lessening of enhancing lesions in my brain. I had a fairly large lesion in the back regions of my noggin that was lighting up like an interrogation light back in November 2006, and this does not appear to be enhancing I can only assume this is a "good thing".

Subjectively speaking (definitely a "scientific" term...LOL), I had about a week to ten days of feeling quite a bit of fatigue immediately following my first infusion. This was followed by what I have called my "flight into health" (because I'm still not sure if it was the drug or just a figment of my imagination) of another 3 weeks of feeling the best I had felt since before my diagnosis. This is not a typical or "usual" response to Novantrone...blood counts generally plummet by about 10-14 days post infusion, so one would expect I might feel quite fatigued at that point. I didn't...I felt great! Slowly, following my "happy" time, I gradually returned to my baseline norm of feeling tired, bitchy, having bizarre MS symptoms coming and going, and basically feeling like I have for the past 4 years. I had a return of pain in my legs, lower back, left arm, developed mystery migraines x 2, buzzing in my left ear, and an assortment of other creepy symptoms, which you can read about at , the OLD CHEESE SITE, which has not yet been brought over to THIS site (if you're interested).

I remain hopeful this drug will halt the progression of my MS...this will be determined by a combination of subjective symptoms and MRI. But in "patient speak", I think there HAS been some I'll keep signing up for the juice until I feel otherwise. Regardless of the arm-twisting techniques of Dr. SWWNBN!!!...

Novantrone...AKA, Blue Dye #24...

It's almost time again for a Novantrone infusion...I have been so focused on work and such the past 3 months seem to have flown by! I am scheduled to receive my second bag of blue juice this coming Friday.

Dr. She Who Will Not Be Named has already reviewed (at least I HOPE she has!) my recent lab work and echocardiogram...these are two, essential tests I will have to have run before EVERY dose of the "juice". Fortunately, the echo is painless and non-invasive and I have been poked soooo many times for lab draws and IV's, I think I have lost most feeling in my forearms! I have yet to hear from the good doctor regarding the results of my MRI last week...but I expected this to be the case.

I am working the next two days before my infusion...I seem to have developed this strange "nesting" ritual in anticipation for the Novantrone. I have to clean my home, change my sheets, get groceries, pay bills, and basically take care of any loose ends that might be hanging out before Friday...I don't exactly know WHY I feel compelled to do this...I just do! I think unconsciously, I KNOW I am a walking medical mishap and should I be rendered unconscious for any period of time (from God knows infusion reactions, etc., that I am prone to), I want to return to an organized home that feels secure and inviting. Is that too much to ask for really?!? But it means I will be scurrying about the hut in the next two days to complete these tasks before work.

And just so you don't think I've weaseled out or forgotten...DOWNSIZE ME continues. Here's the latest graph as proof:
I haven't taken the time to add today's data, but let's just say I am experiencing "feminine bloating" so there's been a pound of weight put back on! Oh, I'm not proud of this...but I'll rip your head off in a hormonal fit if you say anything! Seriously...don't push me...LOL

Tuesday, April 24, 2007

More Disturbing Images From, "Jesus Camp"...

I have to apologize up front for this post...I think I'm sooo wound up about the Congressional hearings over the Virginia Tech Campus Shootings, I'm feeling a bit "fanatical" myself!

But, for those of you who actually saw this movie, "Jesus Camp", did anyone else catch the very subtle indoctrination of the children regarding abortion and prolife images? Hmmm...I certainly did!

If you look at these stolen pictures from the movie and recall the part of the film where the kids are being introduced to "fetuses", you will note they are being handed what they've been told is a "baby at seven weeks old". Here's the picture of the handy-dandy visual tools the camp leaders were using:

Now, here's a REAL picture of a seven-week old fetus:

Do you see any similarities AT ALL between these visual aids and the real picture? No? I didn't think so! These children are being told that a seven week old fetus looks JUST LIKE A "MINI ME" SIZED BABY!!!!!!! And THIS is not plain, old use of propaganda?!? I rest my case.

I'm not arguing for or against abortion here...I'm just sayin', if you're GOING TO ARGUE one way or the other, have the decency to give factual information! Especially to children...who's little eyes and ears are watching our every move.

After all, didn't Jesus tell us to "speak the truth"?...

Monday, April 23, 2007

I'm Fixin' To Blow!...

I'm just going to have to stop watching the news and also cease listening to any political or religious figure...that pretty much cuts out most of my interactions outside of my coworkers, the patients I see, and a small handful of friends!
I was watching the news today about the Legislative Committee that is convening because of the Virginia Tech College campus shooting...I wanted to THROW UP! And yes, I AM getting ready to stand on my mighty soap box (because the elevation the box gives me brings me closer to God!).
What in HELL'S NAME are these JACKASS POLITICIANS talking about??? Do they even know themselves??? The entire focus of their "committee" meeting is surrounding the MENTALLY ILL and how to keep them from getting guns!!!
There are two main groups of peeps I advocate strongly for: Children and the Mentally Ill...because their voices are so often unheard or simply drowned out by the GRATING NOISES OF POLITICIANS AND RELIGIOUS LEADERS.
As I have quoted before (and I'm about to quote it again!), less than 3% of all VIOLENT CRIMES are committed by the MENTALLY ILL. That is a FACT, not fiction. Go to the National Bureau of reported statistics or the National Criminal Justice Bureau...these BEAN COUNTERS (statisticians) seem to get these numbers right!
I am sick and tired of hearing about the mental illness OR mental health of
Cho Seung-Hui, the Virginia Tech campus shooter. I am nauseated to the point of vomit in hearing how he was "committed" at one point for suicidal thinking (and for two, whole days, mind you! A whole lot of mental health treatment takes place in TWO DAYS!)...NOT HOMICIDAL THINKING...suicidal ideations. There is a hell of a lot of difference between the two! And there is a HELL OF A LOT OF DIFFERENCE BETWEEN SOCIOPATHIC THINKING AND PSYCHOTIC THINKING...please make a note of that last sentence, all you daft politicians in Washington D.C.!
It is fine and dandy for politicians to stand on THEIR friggin' soap boxes and be outraged about this recent shooting...except they are only OUTRAGED TO CAPTURE VOTES, not necessarily to HELP ANYONE. Because if they WERE motivated to deal with the MENTAL HEALTH CRISIS that is happening across America, THEY WOULD BE TALKING AND DIGGING IN THEIR DEEP-HOLE POCKETS ON HOW TO FUND TREATMENT!!!
You read that last sentence says "Mental Health Crisis"...and there IS one occurring across America, my dear friends. As more and more social services money is cut by GREEDY-ASSED political leaders (and I won't even side with liberals or conservatives here) to send to meaningless wars and the like, our vulnerable populations of people here in the States are suffering...the mentally ill being one of those groups.
I can only speak for Washington state as FACT about this crisis and I have to be very careful in HOW I speak about this matter also...lest I lose my job! But as the population of the mentally ill increases (because the world population is's just a fact, folks!), more and more money is being taking from this vulnerable group...therefore, less and less services and treatment are available. People are being turned away from mental health center doors because of over-crowding and lack of funding. State hospital beds are being cut and downsized because of lack of funding. Emergency rooms are becoming the primary treatment source because guessed it...LACK OF FU<$ING FUNDING!!!!!!!
This isn't rocket science, you smarmy political figures! If there is no MONEY, there is no TREATMENT. Limit all the guns you want to your so-called labeled "mentally ill"...oh and while you are at it, compile a NATIONAL DATA BASE OF THE MENTALLY ILL...we all want BIG BROTHER watching over these "sick people" anyway.
But what will be the cut off or targeting points for this list? I'm just curious...will it be ANYONE WHO HAS EVER BEEN COMMITTED IN ANY STATE?...because state to state mental health commitment laws vary drastically. Will it be anyone who has ever been in therapy to work on personal issues?...because PUT ME ON THAT LIST RIGHT NOW! Who gets to label/determine just "who" gets considered "mentally ill"?...put me on THAT board of directors, because I know a few political leaders and religious leaders I'd like to add to this vague and freely established LIST OF THE MENTALLY ILL!!!
This topic just exhausts me...but unfortunately, I have to go to work now for my measly STIPEND of a salary (because I work in the ever-unfunded, ever-shrinking SOCIAL SERVICES!!) and try to assist the very people I am talking about...the mentally ill. Somebody has to do it...THANK GOD IT'S ME, and I mean that sincerely...

Sunday, April 22, 2007

I have returned home from my short trip across the Puget Sound to hear my coworker's poem set to expected, Rojoo's work was the best piece I heard at the event...unbiased opinion, of course! I asked if he would mind if I posted his poem here on "CHEESE" and he gave me the thumbs is unfortunate I don't have the chorale arrangement and music to play with it:

Water's face broken
into scales of a fish.

Log stands up straight
in raft of debris,
bobs in foam
backwash of the tide.

Clouds descend,
wanting to rain.

Now they are.

Nothing is missing.
The fall is in my mind;
resurrection happens -
all the time.

When I realize this, happiness;
when I don't, despair,
or indifference,
as sun breaks through
pale water near the island.

Nothing, nothing,
and more nothing,
Sunyata, the void, rampant
on a field of nothing,
emerging into

In a few hours, I am meeting some coworkers to take one of the Washington State ferries over to Bainbridge Island to see this:

Our wonderful and ever-talented "ROJOO" is a featured poet in the performance. His poem, chosen along with 12 others from various poets, has been put to music and song. (Woohoo, Rojoo!)

I only hope that when he's rich and famous and rubbing elbows with the likes of Maya Angelou, he remembers the "little people"...those of us who provided much fodder and angst for his writing. LOL

Saturday, April 21, 2007

OH MY GOD!...Literally...

I just finished watching the movie documentary, "JESUS CAMP"...I am now too frightened to go to sleep! Not because the movie convinced me I am a hedonistic sinner damned to hell either...I am afraid to go to sleep knowing these "Jesus Camp" people exist out there! The movie did not inspire me or put the fear of God in put the FEAR OF HIS FOLLOWS/THESE FOLLOWERS IN ME.

At first glance, the above stolen clipped picture of children's wrists lured me into the notion there was a group of kids out there really supportive of the Multiple Sclerosis cause...those arm bands DO look like the MS Band of Hope after all! I thought, "How great. A group of Christian kids showing their support for MS. We need more fund-raisers out there."

Later in the movie, I discovered these brightly-colored wrist bands (I thought the MS Society SECURED the color red for us?!?) are actually the Pro-Life movement bands...I proceeded in horror to watch children barely grown from the larvae stage chant, dance, and pray for "50 million unborn babies killed by abortion". I wondered if these babies (not the aborted) in this movie even knew what an abortion was...I'm pretty sure of most of them didn't know what sexual intercourse was.

And who IS this woman???

What a dreadfully frightening beast!!!

I watched this movie in absolute astonishment of this woman's convictions and secretly wondered what OTHER "convictions" she might have in her past. After all, the beloved "angel fallen from the grace of God", Ted Haggart, AKA hidden homosexual/gay bashing preacher from Colorado was in the movie also...he really DOES have a conviction and it's not just to Jesus.

I'm afraid I may have nightmares of this woman looking something like this:

She really IS very scary in this movie.

Now just for the record, I am NOT bashing Christianity...I repeat...I AM NOT BASHING CHRISTIANITY. I know many a Christian who are wonderful, loving, kind, and emphatic folks...they love their God and they love their religion. They are good people.

But the words these religious "leaders" choose to use in this movie are filled with hate and they bring me to deep sorrow...because children as young as 4 and 5 are being taught this powerful message of discrimination, bigotry, and violence. Yes, I said VIOLENCE. You simply cannot use the words "peace" and "war" in the same sentence...just like you cannot use the words "fear" and "peace" in the same sentence...the words cancel each other out. Likewise, you cannot use any of these powerful and violent images with children unless you are attempting to indoctrinate them into a world of HATE and FEAR.

It's not Christianity's fault we are at "war" in Iraq (and let's not forget Afghanistan, too, as we so often do). It's not Christianity's fault we are in a "war on terror". It's not "liberals" fault abortion exists and it's not God's fault gunmen kill people randomly on school campuses. IT IS THE FAULT OF HUMAN BEINGS--MEN/WOMEN--AND WHAT LIES IN THEIR HEARTS AND SOULS.

The ironic part of this movie was watching the above woman tell these ankle-biting children to give up the "things of the flesh" and yet she prayed to God/Jesus before her camp opened that the weather didn't knock out the electricity, the sound system stayed up and running, and an assortment of other "material" things. I wondered if perhaps she shouldn't be consulting the Magic 8 Ball instead for her "answers". I just don't think Jesus prayed over such matters when he was spreading his word, but maybe I'm wrong. LOL

So, in the "spirit" of the movie, "Jesus Camp", I pray no one sends me hate mail because of this post, my computer keeps running, the weather stays nice, I win the lottery, and I miraculously lose 30 pounds! Amen...

A Week Without Caffeine, Is Like A Week Without...

The proof is in the pudding...or in the "pudge", as Project DOWNSIZE ME shows evidence (albeit minor) there is life after caffeine! My fatigue level is lower, I am sleeping a bit longer, my weight is slooooowly decreasing, and my blood pressure is dropping. Again, not in major proportions, but enough to document "scientifically"...hehehe...

**Secretly says to self, "Only three more weeks, then this CRAP will be over!"**

Friday, April 20, 2007

Does This Brain Make My A$$ Look Too Big?...

I'm getting so good at posing for these MRI's, I'm considering quitting my day job and posing full time!
Here are just a few of the lovely pictures taken today...

Note the's still there. I WAS wondering about that.

Today was my 15th MRI. Why so many, you may be asking? Well...
Remember I participated in a Rituxan Study in 2005/2006...I had an MRI a month during that study. Not to mention, each time I have had to change disease modifying drugs, a new MRI has been ordered for "baseline" purposes. Let's face it...if gadolinium caused a big arse, I'd finally have an excuse for my hind quarters! LOL
The MRI test went fine today (as expected)...I am so versed in the procedure, I found myself slipping off my pants and bra as I entered the diagnostic lobby. I think this concerned the technicians somewhat...they would have preferred I waited until I got into the changing room...prudes!
I was so tired, I almost fell asleep in the "tube"...but past experience has told me I will get a stern "voice" in my ears via intercom if I do. Who knew I jerk like an epileptic when I sleep?!? MRI technicians are really anal about swallowing (for spinal MRI's)...and no chewing gum. All the things I am absolutely DRIVEN to do once the test begins!
As usual, I claimed my HIPAA right to have them make me a copy of the test for personal theater home viewing...I like to review the scan with some popcorn (and normally a Mountain Dew...but I won't GO there on day 7 of DOWNSIZE ME!!!) and a beverage. It's even better to have a viewing audience...lot's of "oooh's" and "aaah's" occur with an audience. Of course, the audience usually has no clue what they are looking at and I get to play pseudo-neurologist with my MS lecture and lesion locator. Mostly the audience is just impressed there is a machine that can produce such pictures, however...
I DO know a little about reading an has to pick up SOMETHING in visual knowledge after having 15 of the darned things! My favorite thing to do is to email Dr. She Who Will Not Be Named immediately after I view the CD/films (hopefully before she has had a chance to see them) and declare everything looks fine, no changes, and that I believe she has misdiagnosed me. She, in turn, will usually email me back and laugh heartily at my ignorance...
This time, the CD/films will have to be SENT to her office (due to Club Med's changing of my appointment and location), so I will not hear from her most likely until sometime later next week...I have another dose of Novantrone scheduled for next Friday, so I imagine Dr. SWWNBN will have something to say about my pictures by then...if nothing else, she will need to make fun of my pinhead!
And on that dreaded side note that I have avoided typing about...DAY 7 OF DOWNSIZE ME...all I can say is, I am glad it is the weekend! I am hoping to catch up on some sleep and stay away from human beings for a bit. Without caffeine, I have noticed I am starting to turn on them (humans) like a rabid dog!!!
The good news is...if you can call self-punishment "good"...I have lost 2.5 pounds, my fatigue may be slightly improved, my sleep is about a half hour more a night, and I have NOT had another migraine!
Happy Weekend...

Thursday, April 19, 2007

Taking A Roll In The Tube Again...

Dr. She Who Will Not Be Named responded to my complaints of "mystery eye/head pain" last week by ordering yet another MRI. For those of you new to the idea or procedure of Magnetic Resonance Imaging (MRI), I will direct you to "The Sausage Makers MRI Survival Guide", posted in April of 2006: (I'm still in process of transferring the Archives of BRAINCHEESE on AOL over here, but this is one of the few that have made it's still on AOL also).

And for those of you who have been haplessly following my random rants over the past year, you will recall my MRI results have looked like something from a Christmas special...bright light gadolinium glows illuminating the dark regions of my pee brain! So consequently, I'm really NOT looking forward to this test just hasn't produced "happy" news for me over the past two years. And I do like to feel blissfully and ignorantly "happy"...LOL

I'm really not certain what Dr. SWWNBN is looking for this time since her order is in response to my "migraines" (or alleged migraines, that is!). I think she may have just felt like she needed to DO something to look like she was paying attention to my whining!

Whatever the case, I am scheduled for the "tube" at 9:30AM on Friday...oddly, as I am typing this, the Diagnostic Imaging peeps just called to remind me of this I would FORGET I'm going to be shoved into a horizontal rabbit hole for an hour tomorrow?!? Geez...

Club Med also called yesterday in frantic "wad" (their panties, not mine) needing to reschedule me because of some emergency MRI they were needing to do on Friday during my scheduled time...I wondered what could possibly be classified as an "emergency" 48 hours into the future, but I didn't ask...I really didn't want to know. They "moved" me to the outpatient MRI center to accommodate their emergency, which means I am going to a new location, with new people, who don't understand my sense (or lack of)'s like meeting in laws all over again.

And to top it off, Club Med and the Outpatient Diagnostic Center do not interface...they are owned and operated by the same multi-millionaire company (must be Haliburton, I'm sure), and yet their computer systems don't "connect"...this means I am responsible for schlepping old records, etc., to them. What the fu<$?!? My insurance company will drop a cool $3000 - $5000 grand on them and they can't call or walk across the street to retrieve my old films FOR me?!? I think for THREE GRAND, I'd at least draw some pictures or something to make it look like I tried...LOL

On a "lighter" #6 of DOWNSIZE ME is seeming a bit easier AND the scale reveals I have dropped TWO POUNDS this week already! Of course, I DID weigh myself right after a morning sit down visit to the porcelain God...this weight loss may simply be more proof I am full of "Sh!&" should the weight return during the day! LOL


I'm Worried About My Coworker, Rojoo!...

It seems I should have been keeping one eye open and fixed on Mr. Rojoo, my coworker, when I have pulled the infrequent NIGHT SHIFT at work with him!!!!

Yes, he answered the below "serial killer" question correctly...if you want the correct (albeit worrisome) answer, check the comment section of the below post for it..."R" answered quickly and with the skill of Charles Manson.

**Dialing local authorities now**

This Is In Extremely Poor Taste...But Sickly Fun, Nonetheless...

Mkay...maybe it's because of the type of work I do...or maybe it's because of all the publicity surrounding the Virginia Tech Campus shooter...or, lastly, maybe my mind has become completely warped from lack of caffeine! Whatever the reason, I give you the following...and please know if you DO get the answer correct, I will formally BLOCK any future email and comments from you! (Just kidding...the more twisted you are the better). Here goes:

The following was reported to be a test by a famous American Psychologist used to see if one has the same mentality as a killer. Many arrested serial killers were said to have taken the test and answered the question correctly. If you don't answer the question correctly good for you.

Scenario: A woman, while at the funeral of her own mother, met this guy whom she did not know. She thought this guy was amazing, so much her dream guy, she believed him to be just that! She fell in love with him right there, but never asked for his number and could not find him. A few days later she killed her sister.

Question: What is her motive in killing her sister?

(Give this some thought before you answer).

And, just to keep you in suspense, I'll give you the answer in the next post! Good luck in getting the WRONG answer...(**LOL nervously**)

Wednesday, April 18, 2007

Day #5 of Downsize Me...Am I Dead Yet?...

Five days without caffeine...seems like a lifetime! But, has ONLY been five long, miserable, withdrawing, fatigued days. But who's complaining?!? LOL

I DID manage to complete my Spring Update of the NARCOMS survey. What is NARCOMS, you ask? Well...

The North American Research Committee On MS. NARCOMS. I registered with these intellectual folks (at least I hope they're "thinkers") back in the Spring of 2005. NARCOMS is a national research group who tracks and follows people diagnosed with MS (and who are registered voluntarily with need to get your panties in a wad that "someone" is unknowingly watching YOU unless you're registered!). Twice a year, they email or send out paper surveys to their registry, which are all about one's personal MS, treatment, symptoms, disability, etc. I found them to be a worthwhile group back in 2005 and I still think they warrant my 20 minutes it requires to complete their online survey. I also get their quarterly magazine sent to me (all registrants do) for has quite a bit of research information and drug study info as well ( ). Completing the survey today helped take my mind off the fact I am craving a MOUNTAIN DEW RIGHT NOW!!!

I hope those of you living on the East Coast have survived and are recovering from the "monsoon" of weather you just experienced...and for those of you in the Midwest, well...stay calm. Help is on the way (I have no idea why I'm saying that!). And for my southern (and Texan) friends, enjoy your spring-like weather now because it's fixin to get hot, y'all! And gosh darn it, my Northwest and California buds...what's up with OUR weather these days???'re obviously the BEST. And England...well, YOUR weather most likely sucks as bad as the Northwestern United States! LOL

I'm off now to take my detoxed butt to work again...wish me luck...I'm going in...

(Day #5 Downsize Me Graph below: blow it up if you can't see it...I certainly want to...blow it up, that is!)

Tuesday, April 17, 2007

A Moment To Pause, To Pray, And To Ponder...

How can one possibly translate into words the overwhelming feeling in response to the murders on the Virginia Tech. campus? I have personally been stunned and numbed by the news coverage of this tragic event.

I, like millions of others around the world, have been forced to once again confront those deep feelings of sadness and grief as I have watched news reporters disclose details and interviews with students who are giving an account of what has occurred again on our soil...violence.

I have been watching the faces of these children (because contrary to their beliefs, they ARE only children in their late teens and early twenties) as they try to make sense out of something so senseless...something they, nor I, will ever understand. As camera after camera is shoved into their faces, I have watched them mourn, grieve, show fear, anger and resentments, and also witnessed many who appear in shock and disbelief. I cry for these children...

I shed tears for these children, knowing that they are growing up in a violent world...knowing they no longer feel safe. And that is assuming they DID feel some degree of safety prior to this horrific event. I shed tears because, even though they are not my birth children, they are STILL my children...a simple responsibility one must assume as part of living in a larger community. These children ARE my children...they are YOUR children, too.

Mother Teresa once said, "If we have no peace, it is because we have forgotten we belong to each other". Perhaps this is also the basic and fundamental problem in our society today...we have forgotten our roles and our responsibilities. Perhaps this is why violence is so easily committed among one another...we have forgotten this simple "belonging".

I hope we can all take time out of our busy schedules this week to remember we belong to each remember these frightened children in our thoughts and our simply open up our hearts and "remember" what we know to be innately true...we are ALL connected and ALL responsible for one another...lest we forget all too easily this horrible tragedy of senseless murders and acts of violence committed upon our children...

I'm Having A Hard Time Kicking The "Habit"...(especially with the nun still wearing it)...

Yep, I'm having a hard time with DOWNSIZE ME...I'll admit it...I'm a strong enough person to admit my weaknesses. Caffeine withdrawal sucks! It sucks really, really bad...

I did make it through my first afternoon of work completely "unleaded"...unfortunately, about half way through my evening, I found myself laying down on the nasty-dirty carpet floor in my office and putting my legs up on a chair! I needed a break and a breather.

I also found myself circling and coveting one of my coworkers file drawers...a drawer KNOWN to be filled with "relief supplies"! I was on a candy hunt. I opened her drawer (don't worry...she's given me permission so it wasn't like I was stealing. **rubs nun's belly just in case**) only to discover it WAS filled with candy, but nothing I could eat. It contained left over chocolate Easter bunnies, chocolate robbin eggs, and my favorite...WHOPPERS! I closed the drawer begrudgingly and sulked off.

I've decided since I'm punishing MYSELF with this caffeine withdrawal experiment, why not also punish YOU??? It's time for more facts and figures about caffeine (because it's all I can do just to steal information from other websites, let alone write my OWN material!):

Caffeine Facts:

1. Caffeine is the world's most popular drug.

2. Both words, caffeine and coffee, are derived from the Arabic word qahweh (pronounced "kahveh" in Turkish).

3. The caffeine content of coffee beans varies according to the species of the coffee plant.

4. Tea leaves contain about 3.5% caffeine, but a cup of tea usually contains less caffeine than a cup of coffee because much less tea than coffee is used during preparation.

5. Caffeine is an ingredient of certain headache pills (30-65 mg).

6. Caffeine taken in beverage form begins to reach all tissues of the body within five minutes.

7. Use of 75-150 mg of caffeine elevates neural activity in many parts of the brain, postpones fatigue, and enhances performance at simple intellectual tasks.

8. A fatal oral dose of caffeine is in excess of 5,000 mg - the equivalent of 40 strong cups of coffee taken in a very short space of time.

9. Regular use of upwards of 350 mg of caffeine a day causes physical dependence on the drug.

10. Over 450,000,000 cups of coffee are consumed in the USA every day!

Monday, April 16, 2007

I've Been "Meme'd" By MDMHVONPA...Should I Be Offended?!?...

I have somehow escaped the blog-tagging game called "meme" since I began writing BRAINCHEESE a year ago...whodda thunk I'd get "meme'd" today? On Day Three of the Downsize Me project no less...when I am caffeine free and have mindless WIND blowing through the cracks and crevasses of my mind!!!

But, in the spirit of blog play, I will attempt to respond to the meme, "Why Do You Blog", which you only have Mdmhvonpa to thank! Here's a link to this particular blog meme site if you're interested: . It also looks like I'm supposed to tag 5 other bloggers with this "gem of a game", so I apologize in advance to: - Suzy - Jaime - Zee - Mumma4ever - Michelle

Consider yourself TAGGED, suckers! (Since I don't know how this really works anyway)...

So, without further ado, "WHY DO YOU (I) BLOG?":

1. In the borrowed words (and twisted somewhat) of Rene Descartes, "I BLOG, therefore, I am".

2. Blogging keeps me off the streets and out of the dark heroin and prostitute-infested alleys...I only go to those places now in my job!

3. Freud might say I blog because I have unmet sexual needs and desires, which are fulfilled through egocentric writing and an antisocial belief that I am all that matters...he MIGHT say that anyway.

4. I blog because it is cheaper than alcohol, drugs, batteries, high carbohydrate foods, caffeine, and all other things that bring me great pleasure.

5. And finally, I blog because I believe in the need and right for people to have access to information, especially pertaining to Multiple Sclerosis, which is hopefully delivered in a user-friendly forum of humor, where a sense of belonging and community is established...Whew! Who knew?!?

And yes, I AM still struggling with "Downsize Me"'s the latest results, which I'll post in graph form another day:

Fatigue = 8
Sleep = 4.5
Weight = -.5
B/P = 136/94

An Infommercial About MS Fatigue...(because "someone" challenged me to do it!)...

Sunday, April 15, 2007

Day Two Sucks...Just Thought You Should Know!...

So here I sit in front of old Bessie (the computer), trying to formulate thoughts in my "caffeine-free" brain! I am reminded of those old drug commercials that used to air in the States (just clarifying for you Brits that read this)...the one with the egg and a narrator saying, "This is your brain"...then a shot of the egg frying and the narrator says, "This is your brain on drugs. Get the picture?" MY personal caffeine commercial would go something like this, however:

First Clip: The viewer is taken to a scene of a lively old Western town. There is much activity on the dirt street with merchants in windows, horses tied at posts, children playing along buildings, dogs barking and chasing their tails, and towns people mingling amongst each other shopping or doing daily "town" activities.

Narrator: "This is your brain on caffeine."

Second Clip: The viewer is taken back to the main street of the old Western town. Merchants have closed shop, the streets are bare of people and animals, a high wind dust storm is ravaging the dirt street, and tumble weeds are blowing wildly down the corridors. Wooden signs are blowing and squeaking in the wind.

Narrator: "This is your brain without caffeine. Get the picture?"

Yes, this IS my brain without caffeine...a barren wasteland of tumble weeds and little other activity!

I slept horribly last night, which I can pretty much narrow down to a probable side effect of caffeine withdrawal. AND...I had to get up early this morning to ready myself for a brunch at 10:00AM in honor of my retiring boss at work. Neither event (lack of sleep nor early rising) was pleasant, but I did it anyway.

I spent the afternoon with a mild to moderate headache in the front of my noggin just above my no way is this pain in relation to the previous two migraines (if that really IS what those headaches were/are!). I have HAD this particular headache before...caffeine withdrawal...not pleasant, but not horrible like those eye-pinched-with-pliers headaches I had recently.

Everywhere I looked today, there was CAFFEINE! In coffee, in chocolate, in tea, and...I saw someone shamelessly downing a Mountain Dew in my proximity...wretched bastard! I could have killed him for a swig of the wonderful elixir...

I did run my caffeine theory and withdrawal plan by Dr. She Who Will Not Be Named...her response was as follows: "stopping the caffeine is a good idea - but just recognize that you may get worse before you get better." So much for seeking high-priced medical advice...tell me something I DON'T already know, wouldcha?!? Can't tell if she's condoning my plan or warning me against it...but, then again, that IS the nature of medical care these days...

So, on Day Two of "Downsize Me", I am MORE fatigued, got LESS sleep, actually seemed to have GAINED a pound of weight in 24 hours (what the F?!?!), and my blood pressure remains the SAME. I'd say no benefit thus far by scientific measure...LOL

I HAVE gotten several laughs out of the comments posted regarding Downsize appears those of us with Multiple Sclerosis rely quite heavily on the unregulated, uncontrolled substance, caffeine! Some of you have even fired shots over my head warning me of insinuation that "we" should ALL stop taking in caffeine...I say to this, "simmer down now!" Simmer down, sip your cuppa Joe, and leave ME to be the guinea pig in the spot light...this IS in the name of science (and extremely cheap taste of entertainment, I might add!) after all. There will be no finger pointing here...

But I will leave you with just a few more caffeine facts (frankly, some of the information I have been delving into is a bit scary) as I continue my detoxification process...I have to have SOMETHING to hold onto!

Soft Drinks(12 oz can) Milligrams per content:

Mountain Dew = 54.0mg
Coca-Cola / Diet Coke = 45.6mg
Shasta Cola = 44.4mg
Dr. Pepper = 39.6mg
Pepsi Cola = 38.4mg
Diet Pepsi = 36.0mg