Oops! I Made An Error...

You may recall a post I did a few weeks back where I was lamenting over the rapid usage of my available Novantrone? Perhaps you didn't even read this post or have already forgotten it? If this is the case...GOOD! I made a tactical calculation error...*sigh* Fortunately, my Novantrone calculation error will be working in my FAVOR which, by all standards, is a "good thing". LOL I never was very good at math...

After multi-email conferencing this past week with Dr. She Who Will Not Be Named (full of my laments), my Novantrone calculation error was discovered. I had been coercing her (basically by constant bombardment of emails) to begin the process of re-introduction of Tysabri as my next medication treatment of choice. You see, I was under the impression my LIFETIME MAXIMUM DOSAGE of Novantrone was 142mg. Since I have already received 75mg total in my 3 prior treatments, I was believing I could only get another 67mg of the blue juice (yes, THAT basic math DOES add up!)...or approximately 2-3 more doses.

Well, being the sometimes brilliant neuroscientist she is (and sometimes just average, but I'd never tell HER that!), Dr. SWWNBN finally understood my frantic email mode and fiery questions about the urgency of the Tysabri talk. She clarified my mathematical error: My LIFETIME DOSE OF NOVANTRONE IS 142mg/m2. Whoot, you say?!? What in hell's tarnation does THAT mean?!?

Basically it means I am eligible for 12-13 doses of Novantrone instead of 5-6...I know...I don't "exactly" understand these brilliant calculations either. LOL But whatever the case, this is fabulous news...I will be able to remain on the Novantrone for up to 3 years if I need it (barring, of course, any development of congestive heart failure or leukemia...minor details).

So, it appears I will be skipping down the merry path of Novantrone for at LEAST several more months. Who knew something so poisonous could be such a godsend?

Off now to study more algebra and trigonometry. LOL...yeah right...I can barely even SPELL the words...

Couldn't Ask For Anything Better...

"And all the children were sleeping, all snug in there beds...while visions of sugar plums danced in their heads."

OK...it really WASN'T like the night before Christmas at work tonight! But it was darned near the best *present* I could have ever received coming back from a long vacation. A quiet hush fell over the land of mental illness and my triage phone only rang a few times.

My first day/evening back on the job after my vacation has gone quite well. I had the sometimes unfortunate task of triaging all of the intake calls tonight...more often than not, a job that can be completely overwhelming and jarring. But tonight...for whatever reason...the phones were UNUSUALLY quiet...creepy, eerie, quiet...the kind of quiet that could only have been brought about by serious contemplation and prayer to an outside entity much larger than myself! Yes, Virginia...there IS a Santa Claus AND a God!

I was pretty unsettled heading back into work to cover one of the more difficult tasks of my job tonight. But I have to say, the evening went very smoothly and I can relax once again, having now "returned" to the grind. It's always that first day back after a vacation that can be the hardest...the one where you have one foot back in the dreamland of rest and relaxation and the other foot dancing on that thin line of chaos. And if you're not very, very careful, that position can wind up in a painful gymnastic splits!!!

But I am home now...my cat has missed having me home all day at her beck and call. She seems a bit *miffed* I have not been here to be her personal lounging sofa during the day. And I am slowly fading back into my real world of business as usual...sleep, work, eat, sleep, work, eat, etc.

I kind of miss being the topside of my cat's lounge chair right now, too...it sure was a great vacation...**sigh**

Vacation Over...

As I count down the final, precious, sixteen hours left of my beloved vacation, a bit of sadness and reflection is clouding my vision. What a time I have had! This vacation period has been the LONGEST I have been away from my job during the past 7 years...minus a few relapse periods of MS that kept me down and in bed for several weeks at a time! But those days DON'T COUNT!

Let's recap, shall we? Or maybe I should say you ARE going to recap with me! LOL

My true vacation began on Wednesday, July 11th. Unfortunately, I had to return to work for a half day of "mandatory" staff meeting on Thursday...so really my vacation didn't begin until the 13th. But as you may recall (and I have not forgotten!), I got juiced up with NOVANTRONE on Friday the 13th...and it was NOT a good time as Dr. She Who Will Not Be Named flew off in her vacationing space ship and left me high and dry without the proper medication orders. I spent the next week feeling the ill effects of the Novantrone, so technically speaking, my vacation REALLY didn't start until Saturday, July 21st. LOL

But since Saturday, I have celebrated a 43rd birthday, was taken out to eat at a fine restaurant by Saint EB, received lovely birthday gifts, gone for a bike ride, hiked at Mount Rainier, was taken to the local reservation casino by Big Al (did I forget to mention my gambling habits this past week?!?) for the day, built a small wall in my yard, hauled about a half ton of broken concrete from my front yard to the back, went to the horse races as a birthday present with dear "T" (I seem to have gambled quite a bit this week!) which I have never been to before, and hiked a 7.4 mile gut-busting trail! Yeah...I may have REALLY only had a week of true vacation, but I jammed it full of good times.

And now...now, I count down the final hours/minutes before I return to the "grind" of my employment. I am hoping I can remain calm and rested for a bit and ease my way back into the fast-moving pace of crisis intervention (which IS my job!), but it is doubtful this will be the case. This week at work brings multiple changes on many levels and I am not looking forward to any of these changes. I will be returning to a new supervisor and coordinator recently hired, saying good-bye to my previous "Big Boss Lady", who I have grown to respect, moving down the street to a new office building with all new surroundings/phones/procedures, etc., and trying to incorporate a new change in the law I represent. Just thinking about all of these changes is quite overwhelming!

I will try my darnest to get around to all y'alls blogs this week, but it might be a few days in between before I get there...my vacation from work has both saved me and ruined me! So, until we meet again in comments (either here or on YOUR blog), wish me luck...I'm goin' in...LOL

It Seemed Like A "Good Idea" At The Time...

(Photo altered to protect the anonymity of all involved...I am, of course, behind the camera!)And now, I'm not so convinced!

It started out with a plan to "get outdoors" this summer and go for a hike or two. That idea seemed harmless enough...since I have been feeling physically MUCH improved on the Novantrone and gaining some semblance of my "old" life back, going hiking was a natural pick for me. I used to hike around the mountains and hills near Seattle a lot, but Multiple Sclerosis had taken away much of my balance, endurance, and ability to walk distances. Since April, I have seen a drastic improvement in my physical conditioning and have made it a point to try to "get back" some of what I had lost...hiking was just ONE of those things.

Saint EB had gone for a hike (as part of her MS150 ride conditioning and just basically for fun) last weekend and convinced me "we" should take a hike (like I haven't been asked to do THAT a thousand times before...but usually not in the context of getting out in the woods!). So, with the help of my neighbor and coworker, I planned *said* hike for this weekend.

We were originally going to go to a couple of lakes in the Central Cascade area...about 4 miles round trip or so...but, at the last minute, we found out the particular trail we had wanted to hike remained washed out by last winter's flooding.

So, last night, Ms. Merrinuts and neighbor decided to change the trail to one that would be available and "not too bad" in another area. Still feeling invincible, I agreed to the change of plans. The hike was listed as a "moderate" hike still in the Central Cascade region. Interestingly though, three different guide books gave THREE DIFFERENT mileages for the trail, ranging from 6 miles round trip to 8 miles. This should have been a "sign".

We loaded up at what would be the crack of dawn for me (9:30AM) and headed for the Summit of the I-90 corridor to our trail head. Four of us met Ms. Merrinuts (who had probably been up at the true "crack of dawn" because she IS a morning person!) and her beauty queen black lab, Lucy. Armed with backpacks full of food, trail items, cameras, and our cutting edge sense of humor, we began the looooooooong ascent upward on the trail. It was a blue sky sort of day with temps in the low 70's...who could have asked for more on a hike?

About half way up the first 2 miles of the trail, my body began to send me signals it "might" want to mutiny on me...breathing became a bit difficult (remember folks...I just had CHEMO 15 days ago and I have far less red blood cells floating around than YOU do!) and I was completely and utterly drenched in sweat. I looked like I had been swimming in a lake. But still, I climbed. Not wanting to be a party pooper party planner, I trudged onward.

After about an hour and a half of what seemed by now to be a straight upward climb to hell, we reached the "ridge". It was a beautiful ridge with views like this:

At the "ridge" (or "saddle", as it is rightly called in trail terms), we decided to stop on a sunny rock and drain our backpacks of the food we were toting. Snow Lake (the true destination) shimmered far below with an elevation drop of about 500 feet. It was at this point I should have listened to the tiny angel sitting on my shoulder saying, "You can stop now. Let the rest of these lovely cherubs climb down to the lake." But instead...I followed the advice of the devil on my left shoulder taunting me and saying, "Get off your ass and get down there! It's not that far."

I really WAS glad I followed the advisory devil's advice initially...the lake water was wonderful and cool and the view was absolutely like something painted by an artist. Ms. Merrinuts entertained all of us by doing a butt plant unexpectedly in the lake waters and we laughed and breathed in the fresh mountain air.

But then, it was time to leave. And leaving meant climbing BACK up the 500 foot elevation cliff to the saddle, then back down the 3 mile trail to the cars...I considered requesting my friends hike out and send a helicopter back for me. I considered just accepting I had lived a good life and remaining by the lake...forever. I considered LOTS of options, but the only viable one was to get up, get back on the trail, and hike my way out!!!

At about mile number 6 (and my satellite GPS tracker clocked the entire trail at 7.4 miles, thank you very much!), the pain in my legs and feet vanished. One might have seen this as a good thing, but it was not...my legs had gone numb! By the time we reached the trail head and our vehicles, I think I had become a bit delirious...I got the giggles and couldn't walk another step or quit laughing to myself! My neighbor drove my car home FOR me, while Saint EB and another coworker dozed quietly in the back seat...it was oddly nice to see I wasn't the ONLY ONE completely tuckered out!

Some people have problems with their eyes being bigger than their bellies when it comes to food...I tend to have a problem with my MIND being bigger than my body when it comes to activity. I think the clinical term for that is GRANDIOSE...LOL...

How Many Scientists Does It Take To Screw In A Light Bulb??...

I don't know...sometimes I read the headlines regarding the latest and greatest studies being conducted about Multiple Sclerosis and I scratch my head in wonder. I wonder WHY some of these studies are being done when the outcomes are already KNOWN? I also wonder who is PAYING for these particular studies?

Case in point: The following abstract was plagiarized from volume 22 of the Clinical Neuropsychology Journal...yes, I DID say plagiarized because I didn't PAY for the abstract or full article. It seemed waaaaay too stupid a thing to pay good money for (when I could waste my hard-earned dough on more important things like...I don't know...food?!?).

Specificity of frontal dysfunctions in relapsing–remitting multiple sclerosis

Abstract

Various studies have reported deficits in frontal cognitive functions in patients with multiple sclerosis (MS). However, the frontal deficit is not uniform and is often very subtle. The aim of this study was to assess frontal functions in a broad sample of patients with relapsing–remitting multiple sclerosis at the mild-to-moderate stage. The sample included a series of 165 patients. We used a test battery covering the frontal functions that have been described as being altered in MS. Significant differences were found between the patient group and healthy controls on the WAIS Arithmetic subtest, the PASAT, category word recall and the number of trials required to reach the first category of the WCST. In conclusion, we observed significant differences with respect to the control group in terms of information processing speed and working memory. These functions involve connections between the frontal lobe and other brain regions.

If I could add the sound effect of Homer Simpson saying "D'Oh!" right here I would! I wonder if "they" will rediscover fire again soon, too?!?...scarce research money well spent I think...

It Doesn't Take Much To Remind Me...

It is always amazing to me how spending one day quietly in nature can be so healing...I'm not exactly sure WHY this amazes me still, but it does.

My day at Grandma Mountain (Mount Rainier) was the icing on the birthday cake of life yesterday. I went first to my favorite camp ground area...the White River Camp Ground...on the far eastern side of the big mountain. I barely recognized the area after the massive flooding and wind damage that occurred in the National Park last November. The White River and excessive runoff of rain this past winter had cut a near 1/4 mile wide channel down the eastern slope of the park. The river itself remained a fast-surging flow of granite silt and boulders, but it had returned to its normal width in the basin. The western portion of the camp ground had been obliterated as the widened channel sheered huge trees and dirt in its path, resulting in a very steep drop off to the river bottom.

I spent most of my day wandering around the river bottom, looking at river rocks, the water, tiny newly formed waterfalls, and singing loudly to no one in particular...the roar of the river drowned out my warbly voice, so no campers ears were harmed in the process!

I drove up from the river bottom to Sunrise, about a 3,000 foot elevation gain from the river, and stared out at the massive, dormant volcano called, Mount Rainier. She was grand...as usual.

As I stood mindlessly in the shadow of this natural wonder, I was reminded just how small I am in the scheme of things. Many miles stretched between me and the big mountain's summit...thousands of trees lay between us...hundreds of deer, elk, beer, marmots, and other wild animals roamed somewhere between where I stood and the mountain's peak. I was no more than a mere speck of dust in this vast landscape.

I thought about the world that stretched out around me and beyond my gaze. Someone had just been killed in Iraq...a loved one had died...a baby had just been born somewhere on the planet...a child was playing on a swing set...a couple was arguing...a surprise party had begun...a new job had just started...the sun rose somewhere...the sun fell behind the horizon in another place. All of these things were taking place at the same time around the world...somewhere.

For a brief moment, I forgot my own, tiny, microcosm of a world. I forgot my MS...I forgot the job I was vacationing from...I forgot my fears...I forgot my shortcomings...I forgot my habits...I forgot my aches and pains. I disconnected from my "small" world and stepped into the larger world arena and realized what a tiny speck of life I am on this planet.

And, at the same time, I was reminded of my tiny and small thread of life I hold onto so dearly. I was reminded of the uniqueness of its texture and color and the role it plays in the larger tapestry of life. I was reminded of the things that created my texture and color...the hard times and the good...the things of my history and experience that have made me the only "thread" of my kind in the big tapestry. I WAS and AM a part of this larger weave. I AM a part of this big picture.

When it was time to leave the park and drive away back into the hustle and bustle of the city, a somewhat melancholy mood fell over me...I didn't want to leave this spot that felt more like "home" than any place I had ever lived. I didn't want to clip my tenuous umbilical cord connecting me to this place and time of something bigger and far more grand than I could imagine...I didn't want to leave the safety of the shadow of this wondrous site.

I am thankful to have had this one day to reconnect with my true "roots"...it really doesn't take much to remind me.

What reminds YOU of your truth? Your place in this world? Your thread in the big weave of tapestry we call "life"?

Back From Mt. Rainier...(substitute "bye now" for "by now" at the end please...I am tired!)

I'm Going Here In The Morning...

I am trying to pack as much "good time" into the remaining week of my vacation as possible! Yep...I'm going up to Mt. Rainier tomorrow morning to spend the day hiking and basically goofing off.

The park took quite a blow last November when the area had horrific flooding and wind damage...parts of the National Park still remain closed. But I WILL be able to drive to the very vista the above photo was taken...a lovely place on the east side of the majestic mountain, called "Sunrise". You can imagine how the area got its name.

I'll take my camera along with me and hopefully get some good snaps in...maybe even one without a monkey in it! LOL

It's All About Me!...

As I enter my 43rd year this coming week, ignorantly dancing through life on this planet, I thought I'd share with all y'all some important (Whoot? LOL) Zodiac information about my beloved sun sign. Yes, it's true...I am a LEO. Like THAT was a surprise!

For purely entertainment purposes, I have added "editorial" comments to the following description of "LEO", which probably better describe my lot in life as a ferocious lion. My additions are in this color.

The Lion is considered the king (ah, make that queen please) of the jungle, and likewise you Leos have an air of royalty about you (I, on the other hand, have more of a "smell about me"). Some Leos even have hair resembling the thick mane of the Lion (I used to have "thick" hair...now I'm balding and the only thing still "thick" on my head is my skull!).

But Lions are more than roar, for they are truly magnificent beasts (Probably got that "beast" part right). The Lioness proudly cares for the young, hunts and takes care of survival with relentless intent and ferocity, when needed (MKay, this may be the only true part about me...I am partial to monitoring the welfare of children and where food is involved...you BETCHA I'm a hunter!). And proud are you Leo! (Yes, I regularly brag about my PWT status...poor white trash.) Perhaps that's why Leo often chooses work that puts you in the center of stage or in the spotlight of appreciation (Or in my case, in the gutters of society).

Leo are warm of spirit (The hot flashes help with this), eager for action and are driven by a desire to be loved for what you bring to others. Leo are a magnanimous leader and a faithful servant (What? What's that "servant part??). Once scorned in love, however, Leo will withdraw your affections and the light, once brilliant, can go cold (In other words for the motto of the LEO, "If you love something, set it free. If it comes back to you, it's yours. And if it doesn't come back, track it down and shoot it").

Leo motto might be "What you see is what you get." (Or, "This is it, dumba$$") You tend to live your live straightforwardly and with a flair for drama (Yes, every day is a new "stage" in my life...argh argh!). In fact, many Leos are attracted to the theater, the performing arts and public relations, for you truly understand the importance of putting on a good presentation (This really, really doesn't fit for me, since I can't even seem to find the gumption to iron my clothes or comb my hair...but I DO iron my sheets, so...).

As you blaze gloriously through your life, remember to take time to acknowledge the feelings of those around you (You mean other people HAVE feelings?!?). If you forget, you could unconsciously hurt someone you love (Apology is my middle name). But, if you remain aware your impact, others can benefit from your presence (Do they really mean "impaction" here?!?..Yep, it's a bowel joke!).

Element: Fire

Fire signs are naturally warm. A fire gives light and heat, but it doesn't get depleted as others feed on its warmth (But it CAN burn you!). One candle can bring light to a room and it won't burn any faster if ten people read from its light than if there was only one (But there IS that waxy build-up). Fire doesn't plan its next move; it isn't logical (Now THERE'S an understatement!!!). It simply is in the moment and will burn what fuel is available without judgment or forethought (Or regard for "its" fatigue and MS either). For this reason, fire signs can successfully rely on their intuition and survival instincts. The fire of Leo is brilliant and intense (I've been called that before. INTENSE, not brilliant). It's like the summer Sun that relentlessly shows up every day and whose heat continues to build over a period of time (Sometimes igniting forest fires, requiring many people to extinguish it).

Fifth House: Children

The Fifth House is directly related to children, but it is also associated with any type of childlike activity (And, since I never had children of my own, I can only claim to be "childlike". Now that I think of it, I HAVE been referred to that before, but I don't think it was a "good" thing). Even grown-ups need to play and this is a function of the Fifth House. In fact, all self-expression and creativity comes from this sector. Additionally, this is the House of Romantic Love (Yeah, right...my "house of love" is lacking running water, electricity, and furniture. But COME ON OVER!). Truly, the Fifth House could be called the House of Enjoyment.

Key Planet: Sun

The Sun is the undisputed King (Or QUEEN!) of our little planetary system. (S)He is always in the center. Without his/her light, there would be no life here on earth. Although the Sun is 93 million miles distant, its warmth is the basis for all energy on Earth. Astrologically, the Sun represents our will (And I DO have one...as well as a durable power of attorney and a healthcare advance directive!). It's like the fuel that fires each of our individual furnaces and gives us cause to live. As the key planet of Leo, the Sun is the symbol of the self and from it stems all individuality and creativity.

Leo Greatest Strength: Your playful and loving nature (Hmmm...I suppose I should work on this one)

Leo Possible Weakness: Need for approval can become too important. (Why DO you think I write a blog, after all??!?!?)

Feeling Out Of Sorts...

I'm not sure exactly where this post is going today, which is somewhat par for my course. I'm feeling out of sorts and having great difficulty identifying why.

Certainly I can identify MANY recent stressors in my life...from health to finances...but none seem quite overwhelming enough to cause me to lay awake at night fretting or worrying. I have had about 4 nights now of tossing and turning...finally last night, I simply drugged myself into a reasonable 7 hours of sleep. Of course, not without the added effect of a daytime "hang over" from benzodiazapines!

I know my recent near Novantrone debacle created an entirely new set of concerns for me as far as my healthcare delivery system goes...I am suffering from a lack of faith now. LOL And, on top of my need to now question EVERY LITTLE DETAIL where my health/MS is concerned, I have also realized I am only 3 doses away from using up my entire package deal of life time Novantrone...this IS a stressful thought.

I have been toying with ideas of "what next"? What is left for me on the tiny buffet table of MS treatments? "Not much", is the repeated answer that comes to me. I've done the Copaxone...didn't slow the MS down a bit. I did the Avonex...Interferons make me too sick. Which also rules out Betaseron and Rebif. I suppose I could try them, but at what risk? Do I really want to spend the majority of my waking days feeling SICK and/or FEVERISH? And my Avonex fevers were in the 100+ degree marks...as high as 102. That CAN'T be healthy or helpful.

Tysabri got ruled out FOR me...not because I wanted to stop taking it, but because Dr. She Who Will Not Be Named reported my "anaphylactoid reaction" to the TOUCH Nazi's and they allegedly cut off my supply. My most recent conversations with Dr. SWWNBN about the matter indicated there "might" be a possibility I could restart the Tysabri...but I'm not holding my breath on this one. I'm afraid my doctor and my body may have "$h!+ the bed" on this option, so to speak! LOL

I DID 5 rounds of IVIg...I still have no idea at all if this was helpful or not...Dr. SWWNBN tends to think it was NOT. The Rituxan Study I participated in was a flop...at least MY results were. I still do not know for sure if I received 2 doses of the drug. But regardless if I did or didn't, my MRI scans worsened drastically while IN this study. FTY720 has not even NEARED completion of its final testing, which means a few more years out for FDA approval...if it works.

This leaves me with the unpopular choices of monthly IV pulse Solumedrol, Cellcept, Cladribine, or Plasma Pleuresis (suggested by Dr. SWWNBN, which I have never heard of nor can I find any information about it?!). I simply do not like any of these choices.

But there IS that remaining choice of doing N-O-T-H-I-N-G. Just rolling my life's fuzzy dice and seeing where my numbers fall. The medical professional in me balks at this choice, too.

So, as you can imagine (or if you can't, give it a try! LOL), these thoughts are rolling around in the back of my head like waves on a stormy ocean. I am trying to remain calm, cool, and collected...but I find myself wandering down this most darkened lane of thoughts late at night! And, if I toss on other variable thoughts concerning my financial stability (I DO still have medical expenses in spite of my gold pass card Insurance!), employment issues/concerns, AND generalized physical "blah" from my recent Novantrone infusion...I am just NOT a barrel of laughs these days.

Oh yeah...AND I'm turning 43 next week. Woe is me...LOL...

(ALSO...PLEASE IGNORE THE COMMENT LEFT BY KNICKSGRL0917 IN THE COMMENT SECTION OF THIS POST. IT IS A SHAMELESS AD FOR SOME STUPID "TAKE A SURVEY" CRAP AND I DO NOT KNOW THIS PERSON)

I Don't Seem To Run Very Fast From These "TAG" Games...

I definitely need to work out more...I keep getting "tagged" by these Meme thingy posts because I don't seem to run fast enough!!!

Sara, waaaaay over in London, England, has caught me AGAIN with another tag...but this one seems right up my...er...alley! It's a "moaning" meme and gawd knows I certainly do my fair share of THAT (mind out of the gutter here, MDMHVONPA!). So, here goes:

4 things that should go into room 101 and be removed from the face of the earth:

• Sex offenders - I don't believe there is such a thing as "rehabilitation" for these folks and I really think a "sex offender" came up with the idea OF rehab!


• Capitalism - It's just another form of Darwinism and "survival of the fittest". But hey, I didn't make it on the grid yesterday as a Socialist, so I'm not really sure where this thinking comes from!


• Organized Religion - But only the "religions" I choose to banish! Or maybe I should say "religious leaders"?


• Multiple Sclerosis - It's just NOT a cool disease!

3 things people do that make you want to shake them violently

• Driving While Under The Influence - I mean, how totally DUMB and ERROGANT do you have to be to get behind the wheel of a moving projectile while half-cocked?


• Crimes Against Children - If I can't ban them to Room 101 above, I'd take my second choice to violently shake the perpetrators.


• Whining - I have a postcard from a friend that says, "Whining is just anger forced through a small hole" or something I refer to as "A pussy's way of being pissed"!

2 things you find yourself moaning about:

• A 40 Hour Work Week - Why DO we work such long hours here in the USA?


• Other Drivers - If I ruled the world, EVERYONE would have to pass my personal driving test...and that license could be revoked by ME anytime, anywhere.

1 thing the above answers tell you about yourself:

• Sex offenders caught intoxicated behind the wheel of a car would be shot on sight!

Link to the original meme at freelancecynic.com so people know what it’s all about! Be as honest as possible. This is about letting people get to know the real you! Try not to insult anyone - unless they really deserve it or are very, very ugly! Post these rules at the end of every meme.

Who KNEW I was so politically skewed?!?...LOL

For lack of any imagination today (you could tell it was dwindling yesterday by my post about my ceiling, couldn't you?!?), I am posting my "test" results from a website called OKCupid Dating. Yeah, I know...what the heck was I doing on THIS site, you ask? Well, for lack of a better reason, I can only say, "I was bored". LOL

But I DID find this nifty little political view test there...I can't WAIT to see where MDMHVONPA falls on this chart! LOL I'd be interested in hearing where YOU fall on the graph also if you are so inclined to test your views.

You are a Social Liberal (63% permissive) and an... Economic Liberal (26% permissive) You are best described as a: Democrat (26e/63s) Link: The Politics Test on OkCupid Free Online Dating Also: The OkCupid Dating Persona Test

Mindless Thoughts...

So, I'm lying awake on my bed this afternoon, after securing the bedroom door with explosives and trip wires to keep Devil Kitty at bay, while I try to take a much needed nap...I'm chewing on those God-awful "TUMS" to try and appease my nauseous stomach. Why DO those things taste so much like sugared chalk anyway?!? Do you suppose the company that manufactures "TUMS" actually think their pretty colored, cylinder-shaped, stomach aids taste GOOD? But I digress...

Anyway...so, I'm lying awake on my bed this afternoon, listening to the sounds of Devil Kitty try to excavate her way under the door and into my private bedroom sanctuary and I'm thinking to myself, "Self. You REALLY need to get some things done around here (the hut) when you're feeling better." And, as I'm lying there staring upward at nothing in particular, my bedroom ceiling comes sharply into view. It looks like this:

My mind begins to whirl into action, recalling painting projects and home improvement projects that have been on my "TODO" list (pronounced "tew doo" LOL) for almost two years...sprucing up my bedroom has only been one of the small projects on this list.

And as I stared at my ceiling with the eyes of a hawk...minus some clarity that MS has robbed me of...I was suddenly reminded of my bedroom ceiling's texture. Yes, my home was built in the 1980's and the ceilings are covered with that dreaded POPCORN texture effect! I am quite certain drywall experts who built homes in the 80's are now probably retired and laughing their arses off how they duped most of America into having this sometimes-laden-with-asbestos-crap sprayed on the interiors of their homes...SOMEBODY should be getting a hearty chuckle out of this because I'm NOT laughing.

The sound of tiny kitty power tools with jackhammer features was faintly distracting me in the background as I lay on my bed, trying to take a nap, and pondered just how difficult painting my bedroom ceiling would be. It would be much more difficult hiring contractors to come in and REMOVE the stuff, since certified asbestos removers would be needed IF my ceilings contained the lung-cancer-producing compound...and even if my movie-theater-popcorn-ceiling DIDN'T have asbestos in it, there would still be a mess of Katrina proportions having it removed.

As the grossly-sugared-lacking-real-flavor "TUMS" settled onto the lining of my Novantrone-stricken gut, I closed my eyes and shut out all thoughts of painting my bedroom ceiling. I took great pleasure in turning over on my side to ignore the potential looming task above me, belched a noxious, acidic "TUMS" gas from my stomach, much like a baby being positioned to burp, and reminded myself I WAS ON VACATION.

The ceiling would wait...besides, it could be another YEAR before I lay down in the middle of the day in my bedroom to nap again!...I AM ON VACATION...

As Promised...The Answers To Your Life's Questions...NOT!...

Friday The 13th Puzzle...On A Monday...

Finally finished a MS BRAINTEASER to give you from the BRAINCHEESER! I had meant to complete it on 7/13/07...but as you are all aware, it was NOT a lucky day or me. Fortunately, I AM feeling a bit better (not as queasy at least) from my Novantrone on Friday and decided TODAY would be as good a day as any to challenge you with a puzzler all about Multiple Sclerosis...Moohahaha...

Much of the MS research indicates cognitive dysfunction and memory issues are one of many top complaints voiced by those of us with MS. There is also research indicating the more you "challenge" the mind, the better equipped it is to process...in other words, "use it, or lose it!"

So, with the "spirit" (or spite!) of making sure all y'all stay mentally flexible, I've put together a two-part brain teaser for you! Seriously...you can thank me or hurt me later...LOL

The first part is answering 13 questions regarding your knowledge of Multiple Sclerosis...just fill in the blanks. And the second part is a Word Find puzzle to locate your answers. I know...I'm a cruel BE-AUCH...it's what keeps me alive even in the face of potentially fatal medication errors. LOL

So let's play, shall we?!?

1. Currently there is no known _________ for Multiple Sclerosis. Only drugs to help slow the disease progression.

2. MS is thought to be an _____________ disease. It is believed a person's body with MS attacks itself.

3. A classic symptom of MS is ____________, which affects a major nerve of the eye.

4. The __________(abbreviation) is currently the diagnostic test of choice to accurately visualize MS lesions in the brain and spinal cord.

5. It is believed White Blood Cells called T-Cells cross the ________-________ barrier and attack the brain and spinal cord, causing areas of inflammation otherwise known as plaques.

6. These rogue T-Cells attack the fatty sheath surrounding neuronal axons, called __________. This substance normally acts as an "insulation" around the delicate axons.

7. Nearly 80% of all persons diagnosed begin the disease with a form of MS called ________ ____ __________ MS, characterized by periods of symptom onset that eventually go away totally or partially.

8. Rebif, Avonex, and Betaseron are all injectable drugs for MS disease control that fall into the category known as ____________.

9. __________ Acetate, otherwise known as Copaxone, is also an approved injectable drug used to control the progression of Multiple Sclerosis.

10. Natalizumab, or brand name ___________, was recently reintroduced by the FDA as an approved treatment for MS disease control. It is currently the only monthly IV drug available to MSers.

11. Dr. Jean-Martin ____________, a French neurologist, was the first doctor to recognize multiple sclerosis as a distinct, separate disease in 1868. But not until the 1990's, over 120 years later, were any viable medications established for disease control.

12. The most common symptom reported by MSers today and often the most debilitating is ___________. This symptom is reported by nearly 60% of the MS population, although some sources say the symptom is under reported. Currently drugs such as Provigil and Amantadine are considered helpful and on-going research is examining the use of exercise to combat this common symptom.

13. We all know heat can exacerbate primary symptoms of MS. The temporary blurring of vision that can occur when over heated, is known as __________ Sign, named after Dr. Wilhelm _________(same answer). This transient symptom usually goes away once the body returns to normal temperature. So stay cool this summer!!!!!!!

And now...I bring you the WORD FIND portion of today's puzzle!!! Don't worry. Tomorrow I will post the answers to the above puzzle and the grid answers to below. ARE YOU STILL HERE??????? LOL Get busy...

Alive...

Just a short note to say I am alive...not so "well", but alive...and considering my near miss of the wrong chemo dose on Friday, I'd say ALIVE is a pretty good place to be today. LOL

I have now spent the past two days leisurely lounging at home and watching movies...and if it weren't for the moderate nausea and overwhelming fatigue from Novantrone, I might think this "vacation" time was the bomb! Unfortunately, the constant upset stomach just puts a damper on enjoying any bon bons or other trash food with my movies...and my tendency to fall asleep in the MIDDLE of the movie right now kind of ruins the continuation of the plot. Rewind has become my friend.

I purposely rented a mixture of drama and comedy DVD's Thursday as I prepared for my "chemo recovery" days. I have now seen, "Borat", "Bobby", "Blood Diamond", and I threw in "The Holiday" just to get myself out of the "B" section of the DVD listings. LOL I have "Babel" left to watch, and then I can say I've seen most of the new release "B's". Most people are referring to an entirely different type of movie when they talk about a "B" flick...I'm pretty literal...I'm talking about the "B" section of the alphabet!

Saint EB came by this evening, enticing me with my favorite salad from the local pizza joint, and a plan to watch "Borat" with me...all I can say is, at least the company and the salad were good...the movie? Well, you'll just have to see it and judge for yourself. But it was completely mindless humor and it did take my focus off my puny self for a bit. Tomorrow is another full schedule of resting...I do have an appointment in the morning to attend but, other than that, my dance card is pretty open.

And not to digress TOTALLY here (like anything I've said thus far has been absorbing prose?), but has anyone else experienced the awful itching sensation MS brings? I've had the uncontrollable desire to scratch my ankles for a few years now...normally I can override the sensation, or worst case scenario, I have to use ice on my ankles to numb them. Sometimes, I wonder if this is what a cocaine addict feels like when they are withdrawing from the drug...bugs crawling on the skin. I bring this up because I'd like to know if anyone ELSE has had this symptom and what YOU do to control it if you have? Mine seems to have worsened horribly over the past week...to the point I am now unconsciously digging my ankles raw! Any suggestions? I'd greatly appreciate some words of advice here...

Alright...I'm off to watch some prime time TV just to "mix it up" a bit...I'm sure there must be some kind of show on right now that will both entertain me and educate me? Maybe "Desperate Housewives" will do the trick...LOL...

Is It A Sign?...

Let's just say my Novantrone infusion did NOT go well yesterday and I am worried this might be a "sign" of things to come...or maybe I'm just *hacked* off with the whole process and also with Dr. She Who Will Not Be Named?!? Today, I am left nauseated, pissed off, and fatigued - none of which I consider a "good sign".

As you may recall, I have been seeing Dr. SWWNBN six weeks following my Novantrone infusions...my June appointment was my six week marker for scheduling yesterday's Novantrone infusion. I also get the orders for a repeat Echocardiogram, basic blood chemistry panel, and complete blood count at my six-week-post-infusion appointment...I schedule THESE tests approximately 2 weeks before the next Novantrone infusion.

Because the IV leaves me feeling puny and sick for 4-5 days post infusion, it is ALWAYS a difficult decision how I will take these days off from work and STILL remain gainfully employed. My July vacation seemed the most reasonable way to "fit" this event in and NOT have to take more time off from work...what a vacation, right!?!

So...I managed to get all of the testing done with enough time for Dr. SWWNBN to review the results before July 13th - yesterday's scheduled dose. At my June appointment, she had also made me aware she would be going on vacation the second week of July until God knows when...at the exact time of my next infusion.

For those of you who have painfully followed BRAINCHEESE over the past year and a half, you may recall LAST summer when I ended up in the ER following steroid infusions? This was ALSO while Dr. SWWNBN was out of the COUNTRY on vacation! Her vacations do not seem to mix well with my treatment needs. LOL

You can imagine I was already a bit pensive going in for my Novantrone yesterday with Dr. SWWNBN out of town spending my bottomless insurance payments at her leisure. But I HAD asked her who would be covering for her while she was gone...in the event a not-so-typical-but-typical-for-me situation occurred. Yes, THIS time one of her associates would be taking call...Whew...No scrambling to find someone besides the hospital janitor to write orders for me if needed. Surely my infusion would go OK in the good doctor's absence?

Well...I WAS *MISSION ACCOMPLISHED IN IRAQ* WRONG!!! Murphy's Law requires at least ONE major *eff-up* for all of my medical needs...and so the story goes in my own words and opinion:

I was picked up by my dear friend and confidant, "Cocoa" (ahh...that's her stage name/her first pet's name. Yes, she IS undercover NSA, so drop it!), and whisked up the hill to Club Med for my 2:00PM infusion appointment. I was on time. I am ALWAYS on time for medical appointments...unlike the general population of medical providers. I settled into one of the crappier infusion rooms that didn't have it's own bathroom...I should have KNOWN this was already a signal for disaster. I am usually placed in one of the *posh* rooms - equipped with a door, a bathroom, and a nice recliner. My current temporary surroundings had a paper-thin curtain, no bathroom, was the size of a closet, and had an uncomfortable and broken reclining chair...hummmmm...

The infusion unit was extremely noisy...patients were yakking on cell phones, over head pages were blaring in the loud speakers, and I drew one of the *gabby-er* of the three nurses who work in the unit (mind you...I know these nurses well, having received over 20 infusions of steroids and Novatrone in the past year!)...THIS, too, should have been a sign.

Nurse Gabby enters my closet (since there's no door, she really could have just yelled at me from the desk...like everyone else was doing on there cell phones) to let me know the pharmacy called her two hours ago and noted Dr. SWWNBN had DOUBLED my Novantrone dose...what the Faaa???

**SEGWAY** I had called Nurse Gabby around 10:00AM like I am SUPPOSED to do before every infusion to let her know my current weight. She then calls the pharmacy, who calculates my Novantrone dose based on a "mass squared" principle...it really IS rocket science! Based on my height and weight, the chemotherapy agent is mixed just for me a few hours before I receive it to insure it remains properly constituted. The pharmacy had called her WELL before I arrived at 2:00PM to advise contacting my doctor because of her quack order. Nurse Gabby tried to reach said doctor around 12:30PM, but couldn't raise anyone in her office...SOOOOO...she just told the pharmacist to go ahead and mix the QUACK dose!! **END SEGWAY**

You can imagine my concern/frustration/anger/disbelief upon hearing this news...there seemed to be far too many levels of INCOMPETENCE occurring around me: A) Doctor writes WRONG dosage B) Nurse doesn't CATCH wrong dosage C) Pharmacist goes ahead and MIXES WRONG DOSAGE based on nurse D) Nurse can't figure out how to page doctor on call to verify WRONG DOSAGE E) Nurse plans to just GIVE WRONG DOSAGE

I should have just walked out, but noooooo. I had to stay throughout this entire, frustrating process to try to figure out the RIGHT dosage AND get my infusion!!! My vacation was depending on it, after all...*snark, snark*

I suppose I should qualify a large part of my frustration here...nurses. Yes, I am also a nurse, but I have absolutely NO PATIENCE for nursing incompetence. Frankly, this may be WHY I have no patience for incompetent nurses...because I AM ONE (a nurse, that is...hopefully competent) and therefore, know HOW nurses are supposed to do their jobs. I had to basically take Nurse Gabby by the hand and walk her through what needed to happen/how it should happen/what she needed to do to GET MY EFFING MEDICATION ORDER CORRECTED!!!

Let me try to wrap this up here...1. I refused to take a double dose of the Novantrone, 2. I insisted Nurse Gabby call the doctor on call for Dr. SWWNBN to clarify the order (who turned out to be a useless waste of plasma!), 3. I demanded Dr. Useless review my blood work and Echocardiogram before I would accept the infusion (because I asked Nurse Gabby to make sure SOMEONE had done this since Dr. SWWNBN's office had informed her NONE OF THESE TESTS WERE ON MY CHART!!!!!!!!!!!!!), 4. When Dr. Useless could not be tracked down to review my tests, I made Nurse Gabby call the lab to fax my blood work to the infusion unit and call the Cardiology Department to review my ECHO, 5. And finally...I reviewed my own lab results and radiology report of my ECHO (after consultation with the cardiology department via phone) and consented to a 12mg/m2 dose of Novantrone. THE DOSE I SHOULD BE RECEIVING.

I am too tired, nauseated, and irritable today to formulate any lasting ideas or plans about how I should handle this situation from today forward...but believe me...a very formal email was fired off to Dr. SWWNBN when I finally got home last night. I left my previous neurologist because of the INCOMPETENT hospital system she worked in...I am hoping I will not be feeling the door handle hitting me on the way out of THIS system as well! But Dr. SWWNBN has some serious *s'plainin'* to do this time...oh, and an apology would be nice, too...*I'm NOT* LOL here...

Quiet Moment...

The body of a 12 year old girl from Tacoma, WA, who was abducted July 4th has been found. I will not be so crass as to discuss details of this tragic event on this blog out of respect for this family and community.

I am simply spending a quiet moment at home with a heavy heart and once again trying to come to terms with the injustices of the world and the sometimes horrific tragedies that occur.

All I can say tonight is, "Be kind to one another."

Let The VACATION Happy Dance Begin!...

The long awaited vacation has begun! The kickoff happened last night at midnight when I signed out of the gazillion password protected websites I log on just to DO my job, waved farewell to Rojoo (who had just come on duty to work the dreaded night shift), and quietly "gave the bird" to the building in a final act of defiance. Don't get me wrong...I generally love my job, but it is well overdue time for a VACATION!!!

I stepped out of the building last night into the mouth of a dog...or at least that's the imagery and feeling I have right now in this God forsaken, humid heat that has settled upon Seattle. LOL And I unfortunately awoke this morning stuck to the dog's tongue...it was already 80 degrees by 11:00AM. And just to pour more salt into the sweating wounds of Seattlites, WE SET A RECORD TEMPERATURE TODAY...98 degrees. And "they" say there's no such thing as global warming...tisk tisk...

My first day of vacation was spent trying to find ways to stay cool. I was fairly successful in the later afternoon. I went by work (but didn't go IN the building) and picked up Saint EB to go spend a few hours in an air conditioned movie theater...we really didn't care WHICH movie we saw...just one with lots of cool air!

We ended up seeing the new Bruce Willis film..."Die Hard and Live Free", or something like that. Poor Brucey is now 52 year's old, moving a bit slower, and having to perform even more unrealistic and dramatic stunts to keep his audiences entertained. It WAS action packed...but so unrealistic we found ourselves laughing out loud at some of the "high drama" scenes that I don't think were meant to be funny. Whatever...

And somebody enlighten me and tell me exactly WHEN did the cost of a movie during prime time reach TEN FRIGGIN' DOLLARS?!? I swear I've gotten out in the past few years to see movies (usually I just wait for the DVDs as I'm just not a crowd person) and don't recall paying that dayumed much for a flick! But what was even more distressing was the cost of two drinks and a bucket full of popcorn...this total was almost as much as the movie!!! Oh well...I guess it's the price one pays for AIR CONDITIONING...LOL

So, I have to get up at Oh Six Crack Of A$$ Dawn in the morning to attend a mandatory staff meeting...I know, I know...I'm SUPPOSED to be on vacation! I think these same things out loud, too. But it's a county wide meeting I am forced to attend or suffer public caning and having my fingernails removed without anesthesia. But I SWEAR it is my last visit to my employment for the next 2 1/2 weeks!

After the meeting, I need to go with a coworker to look for a present for another coworker, run a multitude of errands after that, and try to get my butt out in the evening for a long walk...the fun never ends. LOL Then on Friday the 13th, I will be spending my afternoon hooked up to a bag of blue carpet dye called Novantrone. But hey...at least I won't be at work, right?!...

A Short Essay About My MS...

The following is a short essay I wrote last year (and added to a bit for update this year) that I thought I would post today...mainly because it is TOO DAYUMED HOT TO THINK about writing anything else! LOL

Enjoy...or not...too hot to care...




I was in the middle of a staff meeting when the “call” vibrated on my cell phone. My Nurse Practitioner had been trying to reach me for the past 24 hours following the MRI. She had left me a message the day before, telling me she needed to speak to me directly.

I quietly excused myself from the meeting to take the urgent call. I remember half wanting to ignore the incessant vibration of my phone and also desperately needing to know what information was about to be told to me. I had been in constant nerve pain for well over four weeks and an urgent call twenty-four hours following a medical test could not be good. Those types of calls only came when test results were deemed “important”.

“The radiologist who read your MRI has given a preliminary diagnosis of Multiple Sclerosis, but you need to see a neurologist as soon as possible. Don’t worry. It hasn’t been confirmed yet.” This was what my ARNP needed to tell me so urgently, but I could tell by the tone in her voice she already believed the radiology report.

I disconnected the call and stood in the busy lobby of my office building staring at the floor. People continued to pass me by on their way to the elevators, but I was oblivious of their movement. I felt as if I had been punched hard in the stomach and I might collapse at any second. Time slowed and the whirl of passerby’s seemed like a distant dream of movements and voices. “You have Multiple Sclerosis”, kept playing over and over in my mind like a warped and broken record.

I don’t recall how long I stood in that spot, mesmerized, stuck in space and time. A coworker eventually came outside the meeting room and startled me from my inertia. She could tell from my blank and distant stare something was wrong, so she asked what was the matter?

Tears began tumbling from the corner of my eyes like a cascading river as I announced to no one in particular, “They think I have MS.” Suddenly even I thought I had Multiple Sclerosis. The past 5 years of bizarre neurological symptoms all appeared to fit nicely in a package called MS. I finally KNEW what had been wrong with me all those painful years…and now, I suddenly wished I didn’t know.



***
My confirmed diagnosis of Multiple Sclerosis came almost five years after I experienced my first neurological symptom, which was misdiagnosed as “labrynthitis”, a condition affecting the middle ear. At that time, I had two episodes in the same day where I fell because of balance problems, followed by about four weeks of dizziness and vertigo. Over the course of the next few years, I would have episodes of excruciating nerve pains in my arms and lower back, periods of vertigo, overwhelming fatigue, numbness and tightness in my legs, and cloudy vision, all of which would last several days to weeks and months at a time. A MRI was done in 1998, but had only revealed herniated and degenerative disc disease in my spine. There were no little, white plaques in my brain or cloudy patches seen in my spine. Yet the symptoms persisted and the “silent” disease process of MS continued to attack my nervous system.

By April of 2003, the sclerotic plaques could be seen on MRI surrounding the corpus callosum of my brain and also in my cervical spine. These visualized “plaques” were what was needed to confirm my diagnosis of Relapsing and Remitting MS on tax day, April 15, 2003. Less than a week following a MRI, evoked potentials, and a spinal tap, a neurologist advised me I had definite MS.

I spent my first year post diagnosis trying to keep my head above the waters of a serious depression and not be suffocated or consumed by the knowledge of the diagnosis. Being an “information junky”, I researched every possible avenue of available information about the disease, including drug therapies, alternative medicines, diet exchanges, and even treatments and “cures” that had no scientific basis whatsoever. And, I tried many of these options in a feeble attempt to control the MS that was repeatedly surfacing inside my nervous system and giving me external neurological symptoms.

That first year of diagnosis was one of the toughest years of my now four-decade life. I was forced to suddenly look at life possibilities I had not previously envisioned or planned on. What if I became disabled and unable to walk or drive? What if my fatigue became so overwhelming I couldn’t function? What if I could no longer support myself financially and had to leave my job on disability? What if MS took away the things I loved and enjoyed the most, like my sight, hearing, or speech? What if I developed incontinence? These “what if” questions frequently awakened me in fits of sleep and were constantly nagging my every thought, leaving me with a clinical depression that only worsened my condition.

I was placed on Copaxone, Avonex, participated in a Rituxan Study, tried on Tysabri, received IVIg while hospitalized, and finally strong-armed into taking Novantrone because my MS would not seem to remit. I experienced 3, major relapses between 2003 and 2007, and each one left me with a bit more disability. Now on my third dose of Novantrone, I feel as if I am finally gaining some control over my Multiple Sclerosis and FINALLY getting some semblance of my life back. The ugly beast of MS has dove out of sight for the time being and I feel like I am now able to relax a bit and “float” in my life’s waters.

***
For those of you newly diagnosed with Multiple Sclerosis, I have nothing compellingly important to offer to ease your discomfort and certainly no words of wisdom about what YOU should do regarding your MS. That’s because MS affects each of us individually and there is no set pattern for the disease’s development or progression. The vast array of neurological symptoms that can affect each of us manifests differently as well as the speed at which MS can progress. Multiple Sclerosis is a disease of the “unknown” for which there is currently no cure, only medications that can hopefully slow the disease progression. The multitude of unknowns can be overwhelming at times.

What is important to remember is this: You are not alone. There is an estimated 400,000 people in the USA currently diagnosed with MS. Some, like you, have only recent experience with the disease while others have decades of experience to share.

I encourage you to become your OWN expert about Multiple Sclerosis. No one knows your particular MS better than you do! Explore the many websites, blogs, and educational seminars available so that you can make informed decisions about your future and the future of YOUR disease. There are unfortunately no “right” answers about Multiple Sclerosis, its cause, or its cure. Because of this, you are faced with making many difficult decisions based on advice from educated guesses and other Mser’s experiences. But those decisions still remain YOUR CHOICE. Do everything you can to choose wisely.

Ring O' Fire...

I won't be so brazen as to COMPLAIN about the 90 degree and above heat wave we are having here in Seattle...this will only bring about tongue-lashing from all of you and multiple comments about my stubborn, cheap, and self-defeating reasons for NOT buying a portable air conditioner a month ago when all y'all chastised me! Ah...and also when the stores still HAD them in stock...**ducking your blow**

It's just too hot to sit here right now in front of this heat generating computer and bitch...so I leave you with this song. I can't get it out of my head today as I am sweating and I just feel compelled to create a nasty earworm in YOUR head, too. Moohahaha...LOL...Just click on the little, blue play button below the obnoxious, red dancing bird below...

Johnny Cash - Ring...