Sunday, March 30, 2008

I Celebrate April Fool's Day With Passion...

I don't know if you've figured out yet my darkest secret from reading this blog, so I thought I'd just confess and get it over with...I AM A PRANKSTER. There, I said it...my conscience feels freer already. Whew, what a WEIGHT lifted off my shoulders. LOL

With April Fool's Day just around the corner, I thought I'd give y'all fair warning...if you are in MY vicinity, you could get punked, pranked, or fooled...I celebrate AFD with the vigor of the Pope on Christmas! It IS almost a spiritual holiday for me. I love to prank and I love to be pranked, keeping in mind laughter/humor is the best medicine for all of us.


Some of my best pranks have been pulled on close friends (warning! If I still HAVE any close friends, that is)...there's been Kool Aid in the shower head (makes a nice stream of color for that first shower of the morning), Saran Wrap on the toilet bowl (this works best for men...the urine flies), fake puke/cat crap/spilled drinks on the carpet (I have to say my MOTHER did NOT find this one funny...who knew?!?), calls from local radio stations, short-sheeted beds, visits from police officers (yes, off duty officers WILL pay your friends a visit if you are friends with the officer!), letters from area hospitals written on official stationery letting the recipient know when their "Optrectomy" surgical date is (that would be a...ah...delicate surgery that severs the optic nerve connected to the rectum in hopes of improving one's sh!++y outlook on life...argh argh), the old standby WHOOPIE CUSHION, and so on.


I've got a few things planned this year, too...but I can't disclose the information lest I tip off the unsuspecting recipients of my prankish ways. Suffice it to say, no animals or people will be injured in the making of said pranks...and hopefully everyone involved will get just as big a laugh as I will. So, in the words of Friday Addams, from the TV Sitcom, "The Addams Family": "BE AFRAID...BE VERY AFRAID!"


Off now to synchronize my watch to the stroke of midnight on March 31st...Moohahaha...

Saturday, March 29, 2008

I Should Be Tarred And Feathered...But I'm Just "Tarred"...

You know, the SOUTHERN way to say "tired"? Tarred... :-)

I have once again fallen prey to my schedule, which has left me with long hours awake and too little sleep. It also leaves me little time or energy to blog troll, blog post, or blog comment...my bad. And some of you are such PROLIFIC POST-ERS, I have a hard time keeping up even during GOOD weeks...because I don't want to miss anything. LOL I apologize in advance for a predicted two more weeks of schedule #E!! on my part...after the next two weeks, all y'all will be begging me to STOP leaving comments on your blogs...trust me (and perhaps you have enjoyed THIS week's reprieve??).


I HAVE managed to survive my first full week back on duty...not without a few bumps and bruises, however (not literally). My office has experienced an unprecedented volume of cases these past few weeks with several staff changes/illnesses, making it all the more imperative I returned to work on full status Monday. I managed to gimp my way through 2 days out in the field and 2 days glued to phones/triage, but not without a price to my physical body. I am having to use my weekend off to catch up on sleep and basically REST my limbs and limbic system (AKA, The Emotional Nervous System )...thank goodness for WEEKENDS, I suppose.


My recovery from relapse symptoms seems to have plateaued somewhat...something I am not pleased about, but also not overly concerned with. My left leg continues to provide its share of discomfort...24/7...rain or shine...and my balance continues to resemble that of a slightly intoxicated sailor...thank goodness for a CANE, I suppose.


I have coined a new term for the worm-like crawling sensation I developed in my left shoulder (which comes and goes in severity--depending on how long I've been upright) along with the other relapse symptoms this go round (although, I HAVE had this sensation off and on over the past few years...just not so constant as now). Since it is only in my left shoulder just over my scapula and down the back of my arm, I am calling it...here goes..."WING WORM"! Argh, Argh...thank goodness for a SENSE OF HUMOR, I suppose.


I will be adding some training sessions to my work schedule next week as well as a couple of appointments crammed in between the lines, followed by having to work two NIGHT shifts on the weekend. If I am still alive after next weekend, I am "allegedly" supposed to get my first restart dose of Tysabri on Tuesday early afternoon, the 8th. I say "allegedly" because, last time I went through the process of coordinating with Dr. She Who Will Not Be Named office, the TOUCH peeps, my specialty pharmacy, and I believe having to receive the Pope's blessing, Dr. SWWNBN STILL did not have my vial of liquid gold on time...THIS time around, I'm making threats. LOL And, so far it seems to be working. **bats eyes innocently** I'm taking people's names down and obtaining direct line numbers to their extensions saying, "Now. You are assuring me the medication will be at my doctor's office no later than the 7th? So, if it is NOT there on the 7th, what is the name of your supervisor? And how will I reach YOU directly on the 7th so you can personally straighten this out for me?!?" I've stopped short of demanding their home addresses, the names of their children, or saying things like, "I know where you work and I know where you live!"...thank goodness for the INCOMPETENCE of others to make the rest of us look good, I suppose.


Dr. SWWNBN seems to hold high hopes the Tysabri will water down the smoldering flames in my brain...she HAS to say that even if there's any chance she doesn't believe it...it's the LAST big gun I have left in the arsenal. I'll just say "if" Tysabri isn't effective, I guess I'm off to the jungles of South America to try injecting the urine of piranha's that I have caught in my teeth by apple bobbing the muddy waters of the Amazon...or some other equally as scientific "cure"...LOL But seriously, I'm 50/50 on the fence here about whether or not I will even be able to tolerate Tysabri again...there WAS that little issue of a reaction last time?!? And, I won't know until I try it...and after that..."we" won't know if it's effective until I'm ON it for a bit...thank goodness for BENADRYL/SOLUMEDROL/EPINEPHRINE (drugs given to me last time to reverse the "anaphylactoid reaction"), I suppose.


Oh, and before I wind this post down, a big "shout out" to my blogger buddy, STEVE from http://www.stevebjj.com/ ...he was the only taker in CHEESE CHAT this morning and we had a most excellent time chatting about something BESIDES Multiple Sclerosis (Steve doesn't have MS, but his wife is pregnant so...he might be having PMS! Pregnant Mommy Syndrome). Any takers for Wednesday the 2nd at 10:00AM PST?...thank goodness for HAVING NO SOCIAL LIFE, I suppose...

Thursday, March 27, 2008

"Shake Down" Causes "Shake Up" In My Book Reading Plans: Subtitled, "The Long Awaited Book Review"...

I have finally finished reading my FREE copy of Joel Goldman's latest novel, "SHAKE DOWN". The delay was certainly NOT because of the content of the book, but due to my busy schedule and penciling time in to have my latest relapse! But enough about me...that subject has grown tired and boring... :-)

As you may recall, a few weeks ago (now, about a month really) I received an email from a marketing source asking if I might be interested in receiving a FREE copy (did I mention the book was FREE?!?) of Joel Goldman's latest work, "SHAKE DOWN". The marketing person contacted me via this blog (as she apparently contacted a few other MS bloggers) and asked if I would be interested in the copy, then write a review of the book on CHEESE. The word "FREE" kept flashing through my mind (as does the word "cheap" when my friends reference me), so I decided to investigate.


I soon discovered Joel Goldman was a well-established author, having published four, prior novels in series: Deadlocked , Cold Truth , The Last Witness , and Motion To Kill ...none, of which I must confess, had I previously read. I was actually astonished I had not been made "privy" to his work until now because I am primarily a crime/mystery/medical/fiction reader (at a 5th grade level). I quickly learned Mr. Goldman was, himself, a lawyer in Kansas City, the setting in which all of his novels are placed. I decided to investigate further.


I discovered Mr. Goldman's website here and unearthed his email address. I sent him a personal email, explaining the reason for my contact and the request that had been made of me (trying to verify the legitimacy of the marketing person). I also emailed the marketing person with questions: 1) How did she find my blog and why? (I worried my blog URL had been written on some obscure bathroom wall "for a mediocre time call"), 2) Did she really understand my readership? All TWO of you? And the fact this blog is an MS related blog? And finally, 3) Was the book copy really FREE? LOL


The marketing person responded quickly, telling me she had done a search for blogs RELATED to the type of neurological disorder of the main character in "SHAKE DOWN" (and the same neuro disorder Mr. Goldman now lives with)...and any blog she found with an email address connected was sent an invitation like I had received. Oh, and "yes", the book was FREE. I let her know I had also emailed the author to determine the legitimacy of her request...all appeared on the "up and up"...and I agreed to the offer. Mr Goldman DID responded to my email as well, which was a very kind and thoughtful communication.


"SHAKE DOWN" arrived less than a week later...when I was in the throws of my recent relapse. I felt some responsibility to "get it read" quickly, but couldn't seem to concentrate for more than 20 minutes at a time...the curse of IV Solumedrol. I was trying to read even during my infusions with the distraction of being poked and prodded and experiencing the wonders of "metal mouth" while attempting to savor the words on the pages. Once the Soly effects began to wear off after round 2 of steroid infusions, I picked the book up again...and, I COULDN'T PUT IT DOWN!


"SHAKE DOWN" begins with the first chapter written in ethnic/cultural language of the inner city of Kansas City. Not being from this culture and with only moderate exposure (given my pasty white American background) I found the first chapter to be somewhat difficult to read and follow...as if the characters were speaking a foreign language (to my inbred Midwestern Caucasian ears). Do not be fooled by this if you run into the same "interpretation" difficulties as I did. The chapter is only 7 pages long and sets the scene for the remaining almost 400 pages...and the story takes off like wild fire from there!


As quickly as Chapter 3, the reader is introduced to Jack Davis, the main character of the book. Jack is a long time FBI agent, in the middle/prime of his life and it is revealed he has been suffering through a crescendo-ing neurological condition (sound familiar, MS-ers?!?). This condition begins developing at the same time his wife has left him...both "conditions" he has unsuccessfully tried to deny away. The description of the condition and the symptoms are written with a bold clarity...the obvious insights of the author's own experiences...and with a diagnosis revealed toward the end of the book (and one I am NOT going to announce here...read the book. LOL)


Jack Davis is living with an unpredictable movement disorder that soon dominates his personal and professional life...a condition he can no longer ignore when it is discovered by coworkers during the height of an intense FBI investigation. He suffers demoralizing loss when he is asked to step aside from his position due to his neurological condition, which he is no longer able to cover up or ignore. And from this place of uncertainty and fear of the unknown, Jack Davis takes the reader down the twisting and sometimes painful path of self-discovery, while dealing with the losses and changes that occur with any chronic, neurological condition...a path he has side-stepped for most of his adult life.


Joel Goldman weaves an intense crime mystery into the forefront of the novel while never losing sight of the main character's personal thoughts and condition. It is apparent the author has done painstaking research into the working function of the FBI as well as criminal investigations...something a "forensic junky" like me can lose myself in! The intrigue in the criminal plot of the novel as well as the descriptive scenes of murder and investigation grabbed my interest throughout the book. The novel is filled with obvious examples of true crime made fiction...as well as the real Kansas City interspersed in detail amidst the lives of imaginary characters. And, as is case in point of ALL great mystery/crime reads, the final outcome of the "who done it" plot remains a mystery until the ending pages...keeping my eyes in the book searching for answers.


So, enough said about writing styles, crime, and mystery...I really CAN'T say much more without giving away important parts of the novel. Which, if you're like me, sometimes even reading the back cover of a book is TMI (Too Much Information)...it can spoil my own desire to uncover key information myself. With an MS brain, it's good to try to figure out the plot on my own...keeps my brain cells functioning! And, if you are into this type of novel, I highly recommend the read...functioning brain cells or not.


What truly captured my attention about "SHAKE DOWN", was actually NOT so much the mystery and intrigue (although this was quite good) of a fiction novel, but the REALITIES of the neurological condition and descriptions of how the condition affected the life and relationships of the main character...an all too real situation that I could relate to in my own life. This part of the novel spoke with clarity to the vulnerability anyone with a chronic disease faces when discovering the disease is altering the course of their life. Joel Goldman is able to transfer his personal experiences into the life of a fictional character, bringing this character out of the pages to a somewhat frightening level of reality...the unknown path and course of a chronic, neurological condition. I commend him for his honest presentation, his vulnerability, and his ability to place into words those thoughts and feelings we ALL face when dealing with chronic diseases...MS-related or not. And for this, I award Mr. Goldman "Honorary MS Club Membership"...I'm sure he'd be THRILLED out of his gourd to accept this award. NOT!


The novel appears to be schedule for release April 1st, so you can head on over to Amazon.com or any other retailer and get a copy...you can't HAVE mine...it was FREE...LOL


**Editor's Note: I was not paid to write this review. Therefore the opinions expressed are mine without monetary influence...except that the book copy was...you guessed it...FREE. And I personally may be CHEAP, but my opinions come with a cost. Often to my own detriment.**


Wednesday, March 26, 2008

Tweaking And Adjusting...No, NOT Drugs...CHEESE CHAT!...

The second CheeseChat session today went off without a hitch...CHEESE MENSA MEMBERS (LOL), OhioMamma, Bubbie, and Joan, were among the attendees...sharing their insightful ideas and intelligent notions about art, pharmaceuticals, Huxley projects (I still think that might be a Bill Cosby Show reference, BUBBIE!), travel...oh yeah...AND MS.

After two sessions of CC and getting feedback from users, I decided to try a NEW chat format with ParaChat. It offers WAY too many features that are changeable for users, which BraveNet did not have. It is still a JavaScript product (sorry Jeri...I hope you get that worked out and can join in soon), however, for those of you needing to run Java on your puter to be able to see the screen. It remains FREE (woohoo!), private, and very user-friendly. There are even customizable sounds you can use just for your OWN window (not controlled by me, AKA, the chat dictator), as well as increasing the font size and bolding the font in your open window...something those of us with MS eye issues might thoroughly need and enjoy.


My goal (albeit perhaps a "lofty" one, given my schedule of late) is to try to offer organized chat times twice a week...that's really enough. After all, we certainly don't want to get SICK of each other! You can still sign into the room at any time and organize amongst yourselves to meet there at any time of the day (or night) with someone else. I will most likely only be signing into the room at the scheduled chat times, however. I'm currently trying out Wednesday and Saturday mornings at 10:00AM (Pac Standard Time), but I'm very open to other days and times, too. For instance, once every 7 weeks (due to my work schedule), I will NOT be able to host the chat on a Saturday because I will be out trolling the streets in search of the mentally ill in crisis. So, if we leave the Saturday day for scheduled chat on THAT particular Saturday, I might be asking one of YOU to host that day! **hint, hint**


Off to get ready for work now...happy "hump" day. I'm hoping to "hump" my way through THIS one...


(And yes, that CheeseChat head STILL disturbs me...so I posted it in the sidebar to "disturb" you as well)

Tuesday, March 25, 2008

Don't Forget...Now What Was It I Wanted To Remind You Of?...

For those of you who are time zonally challenged such as myself, here's your semi-friendly therapeutic thump reminder to get out your pen and paper, calculator, or 5th grade student and do the math to figure out what time 10:00AM Pacific Standard Time is in YOUR neck of the woods...would hate for you to miss the Mensa challenged conversation threatening to take place in the CHAT room here on CHEESE Wednesday morning! Wait...It IS almost Wednesday morning MY time...sigh.

Off to bed I go and probably having nightmares because, I must admit. That cheesehead in the picture up there kind of creeps me out!...

Holding My Breath...

Newsflash: Tysabri is tentatively scheduled to restart on Tuesday, April 8th, at 2:00PM...that is, if something or someone doesn't kill me BEFORE then. :-)

Monday, March 24, 2008

What Do I REALLY Believe?...

Earworms...sometimes they can be deadly. Like when the theme to "Gilligan's Island" plays over and over in my head...or some tasteless commercial jingle clings to my last, good brain cell.


An "earworm" is a made up word describing any song, jingle, or medley that sticks like glue inside the ears, destined to repeat its tune or lyrics over and over in the mind, regardless of desire to ban it or keep it there...sigh...I get at LEAST one of these stuck in my head every day.


Yesterday’s earworm was a nice, little song by The Gabe Dixon Band, called “All Will Be Well”. I found myself humming the song and doing a thing I call "mumble sync"...something sort of like Milli Vanilli's lip sync debacle in the 80's only my "mumble sync" is more hit or miss. As the song plays over and over in my pea brain, I find there are certain parts of it I will "mumble sync" out loud...certain phrases or stanzas...sometimes only blurting out one or two words of the chorus, like a bad Tourette’s. Hence the name, "mumble sync"."


All Will Be Well" is a catchy piano-esque song with a smooth, speedy chorus. The main chorus words are:

All will be well.
Even after all the promises you've broken to yourself.
All will be well.
You can ask me how, but only time will tell.


I have no idea why this song was floating in and out of the radio waves in my head yesterday, but it seemed significant...of course, every little brain fart of my LIFE seems significant to me! Because ALL of my thoughts are highly important...LOL

But as the song repeated itself like a broken record throughout the day, I realized I was also recalling an old poem credited to Dame Julian of Norwich and connecting some kind of unspoken mental dots. The poem I was reciting in my head (there sure "seems" to be a lot going on in my noggin, but it's a false sense of hope that ANYTHING significant is happening in there!) goes something like this:



"All shall be well, and all shall be well. And all manner of things shall be well."


For those of you not in the "know" about Dame Julian (if that really WAS her name...history is not certain), she was born in the 1300's. And, while in her early 30's, she fell gravely ill. Last Rite's were performed, yet she miraculously survived. But during her hours of dying then recovery, Dame Julian of Norwich had mystical visions, which she later documented. She wrote about the Divine and the Trinity in female terms, which was unheard of and punishable by death in her time (What am I talking about? This still IS punishable by death in 2008, isn't it?!? Blasphemy!) But, because of her standing in the Church, she was left alone to humbly serve. Her statement repeated three times of "all shall be well" in the above poem is indicative of her theology and belief of a Father-Mother-God.


Whew! I sure digress when it comes to the history books! Back to the EARWORM and the title of this post (Wait! Hey look! A chicken...LOL) Soooo, I'm earwormin' away yesterday with this upbeat, positive message groovin' in my head, and I suddenly stopped dead in my tracks. “What am I thinking?” I thought to myself…which is a confusing thing to ask one’s thoughts.


"All will be well"...nice message, optimistic, great spring-time quote."All will be well"...and then it hit me. Is this what I REALLY believe? Wow! Talk about being blind-sided by my own Super Ego, AKA, that little “Voice” within.



"All will be well"...yeah, right. I'm in the throws of an MS relapse with airport runway lights illuminating the night sky of my noggin.


"All will be well"...sure, it will be. It just ISN'T today.


"All will be well"...it WOULD be well if I were independently wealthy and didn't have to worry about health insurance, etc.


"All will be well"...if only I were well.


"All will be well"...I can't effing walk without a cane! What is my life coming to?


"All will be well"...


And so it went.



I have always tried to hold myself in the light of being a fairly upbeat person...one of those, "the glass is half full" kind of rose-colored glasses type people. And, for the most part, I DO maintain a healthy sense of humor and delight in the world. But there is also a side of me that harbors pessimistic optimism...you know the kind..."All will be well, MAYBE". LOL I hold that “maybe” card in my hand as a GET OUT OF JAIL FREE pass for this little Monopoly game called LIFE…just in case. Just in case all will NOT be well. I keep one eye forward on the board rolling the dice while clenching my JAIL PASS tightly in my sweaty hands. After all, “all might NOT be well”…pessimistic optimism.

As I sat yesterday and contemplated my “pessimistic optimism” regarding the current state of my MS and life, it dawned on me perhaps I, too, was having some sort of mystic vision just like Dame Julian of Norwich? OK, maybe not a “mystic vision”, but perhaps I was being given opportunity on this Easter Sunday to exam something greater than myself? Maybe…just maybe…my “pessimistic optimism” was doing me more harm than good at this juncture in my life? Maybe I have been wasting valuable energy clenching my GET OUT OF JAIL FREE CARD (just in case I need it!) and not really enjoying the game?

Sometimes I hate it when my Super Ego, AKA, that little “Voice” within, talks to me because it is always right. It is that Voice inside my head that “knows”…it is that Voice inside my head of reason, calm, understanding, fearlessness, and divine wisdom that guides me through my Monopoly game of LIFE with ease. It is that Voice, should I heed its message, that tries over and over again (like a GOOD earworm) to grab my attention within the chaotic thoughts I call my cognition.

I have NOT been enjoying the game of late…I’ve been too busy and frantic trying to control the uncontrollable…trying to “predict” which way my MS might land on the board and at what cost. After all, MS is a very difficult opponent to play against in the Monopoly game called LIFE. It doesn’t follow the standard rules of play and, even with a dripping-in-sweat GET OUT OF JAIL FREE card in my hot, little hands, there’s no guarantee I will get to USE the card. It doesn’t allow me to stock pile my fake money…it doesn’t allow me even to choose which GAME PIECE I want to represent me on the board (I always preferred the Top Hat myself).

What came to me in my “mystic vision” yesterday is this: “All will be well” is STILL a line of pessimistic optimism for me…because I am still predicting my future by saying it. It implies all is not necessarily “well” in the moment…but it WILL be…just wait and see.

Today, I am purposefully placing a made up ditty/earworm in my head called, “All IS well”…I am making a conscious choice to override the other “voices” in my thoughts wanting to play it safe…wanting to keep something back just in case I need it. I’m tearing up my GET OUT OF JAIL FREE card because I’m not afraid to go there. And, I’m rewriting Dame Julian of Norwich’s poem:

All IS well, and all IS well. And all manner of things remain well.”

Sunday, March 23, 2008

Most Excellent!...

Middle Age Mania (AKA, Tricia) has awarded me with this...
And, as I understand it, I am to follow the same rules posted below...


The Rules: By accepting this Excellent Blog Award, you agree to award it to 10 more people whose blogs you find Excellent Award worthy. You can give it to as many people as you want but please award at least 10. You deserve this! Feel free to recognize blogs that have already received this award.


Mkay...here goes!













And this concludes my MS-themed "E" for Excellence Awards...man, that took a lot out of me pasting all of those links! All y'all better give 'em a click and check out their blogs for my "E" for Effort here...

Saturday, March 22, 2008

It's That Time Of Year...For Shinanigans!...








Happy Easter from BrainCheese!







And Then There Were Three...

Results of the first CHEESE CHAT session are in (if you are reading this now, you've miscalculated your time zone...sorry...the room is vacant!). All TWO of my blog readers showed up!!!! Woohoo! Just as I predicted...LOL



Anne and Sharon, thanks for the chat and entertainment...we'll just have to see if the "room" works out and if anyone is so inclined to use it. For me, I have to pencil in a time to sit down at the computer...works best with my crazy work/life schedule. And yes, the ads for BraveNet are a bit much, but the room is "free" through them (and you know how I love "free"!).

For those of you just tuning in (and wondering what tangent I have gone off on), I have added a "chat room" to CHEESE right up there in the left hand corner of the information bar...it's a private chat room, so generally speaking, only those that know about it from CHEESE have access to it. I am scheduling times for people to join in chat if they'd like (and trying to keep the times convenient for the mult-time-zoned peeps). The goal is NOT so much to talk about MS (although we WILL!), but to connect people of a like mind with one another who happen to have been drawn together BECAUSE of their MS. Another goal is to provide a "safe" format for talk, questions, thoughts, beliefs (MS related or not), in a less chaotic room than some of the bigger MS chat sites such as MS WORLD. If you are interested, you are WELCOME here. The only rule that applies to conversation is, "DO AS YOU WILL, BUT HARM NONE"...which is the Golden Rule of thumb for BRAINCHEESE. And I know we can all play nice...LOL You ARE welcome to use the room at unposted times also if you just want to "chat" with someone privately. You'll have to arrange a time to meet them via email or other form of communication, however, so they know you want to chat with them...

SO...next scheduled chat time is:
Wednesday, March 26th, 10:00AM Pacific Standard Time
(remember to do your time zone math!)

Thursday, March 20, 2008

Wow! That's Quite An Impressive (CHEESE) Head Count...

You are overwhelming me here! I didn't know there were more than TWO of you who even read this blathering blog...now it looks like I'm going to have to come up with something to "chat" about on Saturday...GAH...LOL

But seriously...I'm really looking forward to meeting those of you who can make it into the chat room at your appropriate corresponding time zones on Saturday...and quite honored, too. Y'all have been such a wonderful community of support for me over the past two years...let's have some fun getting to know one another on a different level, networking and...well...just have some fun!


And by Saturday, I should be quite "loose" from the steroid insomnia...just a warning...or a sad statement of reality. I had my last dose of 3 Solumedrol's today...gait is somewhat better and my left leg has now become an aching LOG, which I think is progress, right?!? I mean, the symptom of pins/needles/nerve-y sensations is much better and I can now at least step DOWN on my foot without wanting to jump UP into the air...progress...ah...LOL My balance is still concerning me...but only when I'm not walking directly in front of a bar...then, the public expects it. And I "miss" that bar gait when in front of a pub...heck, lately I've been missing that warm feeling of DRUNK since I stopped touching the spirits 20 years ago! MS sure does bring out the best in me, eh?


Must go now and appease the Princess O' Darkness with my undivided attention...it's not that she really misses me when I am at work for the day...she just believes I should miss HER more...

Mkay...Simmer Down Now...


Note the time...yep, steroid insomnia!

I've become very lazy once again about responding to the profound comments y'all are leaving here on CHEESE, but I haven't missed one yet...it seems there is a "demand" (LOL) of at least ONE of my two readers for me to arrange a CHEESECHAT time so that folks will know when to sign in to BrainCheese (or avoid it!) and then sign into the chat room on the side bar.

Well, your prayers (or curses) have been answered...on somewhat short notice, let's give Saturday, March 22nd, at 10:00AM a first round try. I know weekends are not necessarily a "good" pick, especially for those of you who actually HAVE lives...but this time fits in the CHEESE schedule and, after all, it IS all about me! So, if you are around on Saturday at 10:00AM PACIFIC TIME (this means adding an hour to YOUR time zone for each zone heading east of Washington State...MNT Time=11:00AM; Central Time=12:00PM; Eastern Time=1:00PM, and so on,,,folks in Europe, Aussies, you're on your own figuring this one out!). Just click on the "Talk Amongst Yourselves" link at the top header on the side bar, and you'll be directed to a sign in page that will ask you for a screen name you'd like to use for the chat room...you can make something up clever or simply sign in with the name you use to leave comments (so we can all recognize YOU). You will have to leave a brief word or description in the box immediately below your sign in name...leave as much or as little as you'd like here. I'll be signed in as BRAINCHEESE, with "ADMIN" in my description at 10:00AM PST. I'll simply hang out there for a half hour or so to see if anyone has made it in...after that, I'm outta there, understanding that I am the ONLY one without a life on a Saturday morning! Oh, and you will need to be running Java Script on your computer to be able to see the chat room...just a thought.

After Saturday's attempt at chat, I'll try another time next week during the week...I'm thinking Wednesday, March 26th, 10:00AM PST again...same protocol for signing in, same time zones for all y'all as the Saturday chat. Let's keep it simply, eh? LOL I'll also post the next scheduled chat time on the side bar above the "Talk Amongst Yourselves" link...It's really the only place I can conveniently change things for everyone to follow.

I am not quite certain how this post will look when I publish it as I am typing from my recently gifted (yes, I DID say "gift" as in FREE! And y'all KNOW how I love FREE stuff!!!) Macintosh iBook laptop in bed. My old HP laptop bit the dust some time ago, so I have been having to post everything from my work horse desk top for many months. I am not used to the Apple ways of life (have always used Windows Operating System...sigh), so I am quickly trying to familiarize myself.

You're probably wondering how in the world I received a FREE iBook aren't you? Well, in my continuing efforts to protect the innocent, suffice it to say I have also been gifted with a number of WONDERFUL people in my life...most I refer to as dear friends. And, one of these "wonderful people" recently upgraded their laptop, deciding to "gift" me their OLD version...knowing I have been spending far too many days at home of late wasting away in Relapseville...searching for my lost shaker of salt (sorry, earworm to "Margaritaville"!) And now my tribute to a Budlite commercial..."I love you, man!" Seriously...thank you. You know who you are...

So, I'm going to hit the Blogger Publish bar soon and see what happens...I notice I am not able to change fonts or do much editing at all of posts from the iBook...I may be getting out of bed ANYWAY and heading into the office to "edit"...hate to though. The Princess O' Darkness will hear me awake at 4:00AM and believe it is time to FEED her! And, if I don't respond to her demands, she will then attempt to dismantle me...piece by piece...starting with my legs. I only hope she gnaws off my LEFT leg first...I've grown pretty tired of dragging it around with me anyway...LOL...

PUBLISH SURPRISE...

Wednesday, March 19, 2008

Steroidally Challenged...

Hateful, but beloved (LOL) Tricia over at Middle Age Mania (who's husband has Multiple Sclerosis) tagged me with another Meme...and, since I have the attention span of a crazed gnat, I've decided to play. It beats trying to formulate coherent sentences at the moment! Here we go:

Four films I’d watch again:


1. Silence Of The Lambs (because I didn't CRAP MY PANTS ENOUGH IN FEAR the first time I saw it!)

2. Wayne's World...Wait! I've already seen it 8 times.

3. Fargo (gotta love those Midwestern accents)

4. Sybil (only because I don't think Sally Fields WAS acting!)


Four places I’ve lived:

1. My mother's womb...until she kicked me out!

2. Nebraska

3. Texas

4. Washington (specifics of 2-4 not provided to avoid extradition)


Four TV shows I watch:

1. Grey's Anatomy

2. Criminal Minds

3. Dexter

4. Numbers (sense a theme here in these shows???)


Four things to eat:


1. Spaghetti O's

2. Grilled cheese sandwich

3. Cold pizza

4. Anything that doesn't eat me first!


Four places I'd rather be:


1. My bed...fast asleep for ten hours. Yeah, like THAT will ever happen!

2. My mother's womb...did I mention she kicked me out already???

3. Jail...I've been told by patients the food really isn't that bad and the boarding is free!

4. Hell...I imagine it's quieter there and besides, no one would EVER think to look for me there! **blushes innocently**


Four people to tag:


Puleeze! I love y'all too much to do that (Tricia???). But if I must to "play nice"...

1. Joan at A Short In The Cord ...because she doesn't have ENOUGH to do with her remodeling project under foot!

2. Blindbeard at Blindbeard's Multiple Sclerosis Blog . Can't WAIT to read your twisted answers!

3. Sherry at Word Salads, The Demyelination Of Me . Because you've just been too DAYUMED quiet these days! You OK?

4. MDMHVONPA at White Lightening Axiom: Redux . Because I fear you are dead as you have not posted in like a gazillion years. And if you are NOT dead and can still type your answers by blowing through a straw, I know you won't be able to pass up this challenge, my friend. (Please let us know you are alive, Mkay? Seriously...)

Trevis Gleason Outted...Moohahaha...

Most of you CHEESE readers know I have MANY MS blogs on my list of reads...and I DO try to get to all of them...eventually. Some, I read more frequently than others without doing the courteous thing, which is LEAVING A COMMENT...and still some, the authors grow weary I am sure, of what I think at the time are my WITTIEST commenting thoughts!

There is a blog I have been reading almost since the time I was diagnosed, which I only happened to stumble into. It is located at a site called, HEALTHTALK , which I refer to as a "warehousing" site for many health issues. I fell into Trevis Gleason's MS Blog called, "Life With MS", and quickly absorbed his many topics (now 300+ posts as he generally writes for HEALTHTALK M-W-F only). And, in reading his varied posts, discovered he, too, was a local Seattelite (bonus!). If you go to his blog, you will also discover he does the monthly MS podcast series in which he interviews well-known authors, neurologists, health practitioners, writers, etc., from around the U.S. (and possibly the world...I've never really paid attention to locales of guests)...and he also happens to be a recognized "food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and California Culinary Academy (CCA)." (Sorry, Trevis...I stole that line directly from your profile!!)

So...why am I "MS outting" him (sorry if the headline was misleading folks, he's not "gay" to my knowledge...he has multiple sclerosis!!)? Well, first of all, I had the pleasure this summer of meeting this remarkably humorous man because his "Beat The Brae" MS150 tent team was my MS150 tent next door neighbors. I mostly spent my two day affair chatting it up with his girlfriend and meeting his beloved dog, Sadie...Oh, and feeding HIS team my "culinary delights" of pre-formed cookies from store bought dough and mixing margarita's for them! Sadly, I do not recall being fed any of HIS "award-winning" chef concoctions...sigh...LOLThis past month, I happened to note in my stats (those "I see you when you're sleeping and know when you're awake" Santa Claus hits all y'all make when you click on BrainCheese) there were several "hits" coming from his Healthtalk blog...I have to admit, I had become a bit remiss in my reading of his blog over the past several months...so I happened over there to attempt to figure out WHY I was having readers redirected to CHEESE...and I worried "someone" might have taken "something" out of context regarding my multi-MS Society rants of late. After all, Trevis DOES speak at many "Society" events, for which I do NOT hold against him. LOL

I don't often read the side bars of blogs because I simply don't have enough time in my days...this is the area where bloggers (such as myself) put permanent links, blogger information, and a world of other "ideas"...I figure if I've read them ONCE when I first discover the blog, I'm good to go, so to speak...only "updating" my viewing of these side bars when something new catches my eye or I'm directed by the blogger to check something out. Since some time had passed in my reading of Trevis' blog, I decided to view his side bar...and it is here, I discovered he had (obviously recently, given the recent redirects to CHEESE) put up a short list of "Recommended Blog Reads"...BrainCheese was listed at the top of the 5 recommendations (only because the letter "B" comes at the beginning of the alphabet, I am certain!), along with two of my favorite MS reads, Brass And Ivory (listed as "Carnival of Bloggers", hence coming in the "C" section of the alphabet!), and Sunshine And Moonlight .

I don't know if I should be honored or highly "concerned" to be listed as a "Recommended Blog Read" on Trevis' site...I had no idea HE read CHEESE and I seriously worry this might be some kind of REVENGE for what (I'll just say "I") might have "witnessed" happening to his beloved MS150 Team Banner on his tent day 2 of the ride! I know I was secretly BLAMED for this:
And, I know my excuse that Dr. She Who Will Not Be Named DID this blatant destruction of property herself kind of washed out because she wasn't even THERE for the second day of the ride...but I'm just sayin'...why am I always blamed for the mischief?!?
**Moohahahaha laugh heard round the world**...

Tuesday, March 18, 2008

Work, infusions, crack "ho's", and Peeps (the marshmallow kind)...

The title of the post pretty much sums this up! I returned to work today after a 5 day furlough (cut short one day by an "extra" day of make up work last week), riding the bus downtown because it appeared to be a nice, almost spring morning. I hoofed it two city blocks from my bus stop to my work building...a feat with two canes, a weak and somewhat dragging left leg, and balance like a drunk...it takes me almost as long to go two blocks as it used to take to go 2 miles.

Work went fine...minus emails back and forth to Dr. She Who Will Not Be Named and her office minions. It was decided at 9:00AM today that I would subject myself to another round of Solumedrol X 3...barely enough time to call the infusion lab, notify my employer, and prepare my schedule to accommodate the infusions and steroid side effects. My employer is being quite accommodating to my ever-changing schedule these days, which is very helpful...I imagine "they" are either thinking (or wishing?) I might drop dead any minute or eventually just resign to the MS and resign my position...neither, of which, is likely in my near future...I'm too pissed off to do the latter and not lucky enough for the first event to occur! No, I will be living with this dreadful disease for a long time to come...because I pissed off someone "somewhere"...LOL


So, I got my first infusion of three scheduled at 3:30PM today, left work at 3:00ish, and hopped the bus BACK up the hill to the infusion lab...with ANOTHER 2 city block walk from the bus stop to Club Med (can anyone spell T-A-X-I here?!?). I love my infusion nurses and they pretend to love me...because I feed them cupcakes, candy, and cookies when I am able to do a "treat" run prior to my infusions...I learned a long time ago to feed the hand that can kill you! They always treat me kindly and honor my "professional" status, which in plain English means, they don't slap my hands for tinkering with my infusion pump and messing with my IV or demanding copies of my labs for my OWN medical interpretation. :-)


Today, not unlike my last infusions, it was duly noted my veins in my arms have grown weary from being poked for 5 years...on the third stick, I insisted my nurse just "shove it in" my right hand to avoid the roaming IV nurse call...the "roaming IV nurse" is a nice enough person (I have had to encounter her on occasion and feel I can offer this "professional" opinion...LOL), but she will contort me in unholy positions to find that one, measly vein practically in my arm pit just to be able to say, "There's not a patient YET that I can't find a usable vein on!" Usable? Yes. Conveniently located and able to stay patent (open and running for three days)? No. My right hand seemed the lesser of two evils (because I am left-handed)...and that's where my beloved infusion nurse "shoved it in".


Half way through the infusion, I developed "metal mouth" and knew I was NOT receiving a placebo (I have paranoid delusions DR. SWWNBN is just ordering sugar water to shut me up)...and an hour later, I was roided up and ready to go...just in time for rush hour bus traffic!


I plodded, limped, huffed, and gimped my way BACK to the bus stop just in time for what "should" have been my bus home...I was even ten minutes early. My bus route is notoriously late and, on many occasions, NEVER ARRIVES AT ALL...sigh...public effing transit. It's great when it works and a curse when it doesn't. But, I digress.


As I stood at my faux bus stop...I call it a "faux" bus stop because the area which I catch the bus near Club Med has been plagued with drug deals/drug abusers for so long, the city simply responded to bus rider's calls from this stop by REMOVING THE COVERED BUS SHELTER AND BENCH! I realize this was done to keep heroin addicts from laying down on the bench out of the rain to shoot up, but PULEEZE! Soooo, I'm standing at my faux bus stop watching the "activity" of the area, when I note a woman across the street engaging in conversation with some tweaking addicts/dealers. And, to make a long story short, I watch them walk into traffic, cross the street, try to get the attention of a dude DEALING in daylight out of his van, cross the street AGAIN in traffic (and not at the cross walk), stop to converse (obviously "van dude" wasn't selling to them), THEN...watch one of the addicts pop the woman in the face yelling, "You try that sh!+ again on me and I'll pop you again, beauch"...while she was yelling, "You're going to jail for this!", and trying to dial her cell phone.


Drug addict #1/Mohammed Ali took off, while drug addict #2 seemed in too much of a stupor to flee. Drug addict #3 (who I fondly refer to as "Crack Ho", began looking around the street and spied me at the faux bus stop with my two canes, pasty white face, and still dangling my county badge on my sleeve (it also serves as my BUS PASS...I still NEEDED it on me!)...she crossed the street AGAIN in the middle of traffic probably thinking I'd vouch for her "version" of the story...which appeared to be a smack in the face after a drug deal had gone bad. And please don't think I'm being racist/sexist/or in any way biased about the scene...if I hadn't overheard drug addict #1 say to Crack Ho, "Yo, so and so's my man. He'll hook you up with some sh!+", I might have thought she played an innocent role! But alas...this was not my "professional" opinion.


Crack Ho, as I said, crossed the street and eyed me...I mustered up my best "you-don't want-to-approach-me-because-I-saw-the-WHOLE-thing-go-down" face accompanied by my practiced "I'm-an-officer-of-the-court" professional stare...I believe it was at that moment, she realized I HAD seen the entire scene unfold and thought better of engaging me in her plight...either that or, the two canes looked menacing. LOL


Fortunately, my bus-following-the-never-showing-up bus arrived shortly after this and I hopped/limped/gimped on it...but not soon enough for me NOT to see Crack Ho find yet ANOTHER drug addict/dealer half way down the block to score upon...all was right in my world.


Not long after I returned home, Saint EB called me to say dinner was on the horizon and she was coming to retrieve me in her saintly fashion...we had a delicious hot meal (I've been eating cold sandwiches at the hut all week, so this WAS a treat), then headed to the local one stop shop for a few items AND to buy some Easter Peeps...don't ask...they're not for me!


I have no idea what is in store for tomorrow, but if it is HALF as exciting as today, well...I may need to double up on my Klonopin to withstand the entertainment...in my "professional" opinion, that is...

Monday, March 17, 2008

An Itch You Just Can't Scratch...

I began my day with the familiar routine...ah, that would be a SHOWER, not plotting world domination! And, as I stood in the shower with the hot water pelting down on me in feeble effort to wash the haze of Neurontin and lack of sleep from my eyes, I felt that old, familiar "itch" beginning in my ankles and feet. I sat down in a low tub of water (because my balance sucks right now and I also wanted to soak my torso in an effort to relieve the aching that has begun in my back)...in water probably much too hot of temperature for ANY MSer to tolerate...but, I did it anyway. And, the "itch" became intolerable. I mindlessly began scratching both of my feet in an effort to relieve the sensation...something I should NEVER begin and something I already KNOW will only make matters worse! I'm talking about the "MS ITCH"...


There's only one other person I have ever read/heard describe this sensation...Zee in Portland...and maybe it's just a West Coast MS thing. :-) LOL But it is a sensory issue that DOES seem to come from MS (believe me...I've been looked at for scabies, fleas, rash, dermatitis, etc...there's not a DAYUMED thing on my flesh!) AND seems to be triggered by a change in temperature or pressure to the area(s). So...I thought I'd discuss it here...on an MS blog...and see if there are MORE than two MS souls out there that have experienced this phenomenon.


I first started noticing this sensation not long after I was diagnosed with MS. Initially I thought (just as I wrote above) there was "something" on me...some kind of rash or dermatological issue I would see. But every time the sensation was apparent, NOTHING was apparent on my flesh. It seemed to be worse when it was hot outside and/or my feet were perspiring OR when I wore shoes that gripped my ankles in some fashion...like boots. I would find myself unconsciously DIGGING at my flesh in an effort to scratch the itch out...many mornings I woke up with deep fingernail gouges in my ankles from scratching them in my sleep. Not a pretty sight (of course, I'm really the only one who catches glimpses of my own ankles these days...when I can find them below my gut!)...


I asked one of my first neurologists about the issue...I was told to use Benadryl cream or some other topical ointment to relieve the "itching"...these things only seemed to apply a thin layer of GREASE that coated my feet and ankles, making them no longer air-permeable, and sealing in my own body heat...I simply SCRATCHED the lotions off, usually drawing blood! And, no matter how deep I scratched, the motion did NOT relieve the sensation...as a matter of fact, scratching my ankles/feet only made it WORSE! And then there were/are the "zinging" sensations that accompanied any scratching...as if my skin had developed its own circuitry and was sending out signals that I can only describe as the sensation of stepping down on a foot that has gone to sleep...except THIS sensation was on the TOP of my feet and ankles.


I finally had to stop wearing boots...or anything in the warm, summer months that might cover over my ankles. I made mental notations (stored in the holes of my brain) to deliberately STOP myself from scratching my "itch" whenever I could consciously remember. I tried to keep my feet as cool as possible and learned that if I ran cold water over my feet (when in dire MS ITCH mode), the itching sensation would lessen...for severe episodes, I have even used ice packs...much to the chagrin of my dainty tootsies.


For the most part, I have learned to live with the MS ITCH...although, when it hits me at times I am least prepared for it (like in the living room of a patient who already believes I might be the devil!), it is a curse to live with. I can't throw off my shoes and socks OR run cold water over my feet...this would be frowned upon in my "binez"...I simply have to grit my teeth and bear it...until I can justifiably slip my shoes (and sometimes socks) off.


Over the past year, I have developed a somewhat similar sensation in my left shoulder. This sensation always comes with the "warning worms", however. I will get a tingling feeling in my shoulder blade, which eventually develops into a sensation I can only describe as worms crawling about under the skin of my shoulder...this sensation will finally give way to an "itch"...a bit different sensation than my ankles/feet, but scratching is definitely on the priority list! This might develop over a matter of minutes or even days...always the same sensory pattern...always the same annoyance.


Sooooo...my question to all of you MSer CHEESE readers is this: Got an MS ITCH story YOU'D like to share??? I'm just 'itchin' to know I'm not the only one out there with this issue...




(**Editor's footnote** MS relapse update #57: Still no significant changes in symptomology of this relapse...and, with the discovery my brain is smoldering inside, "we" are considering trying ANOTHER round of IV Solumedrol in hopes of getting me back to full status duty at work as quickly as possible while awaiting to hear if I am approved once again for Tysabri. I am, needless to say, a bit "crabby/bitchy/pensive/obnoxious/isolative/sad/moody/angry/lethargic" and taking ALL of this out on my sweet cat and friends...sorry, folks...I DO appreciate your concern, emails, e-cards (Joyce), phone calls, etc...and, if any of you are still around after the Wicked Witch of the West melts, I'll apologize again! If it's any consolation, I've also taken to "E-Yelling" at Dr. She Who Will Not Be Named as well via emails...why should SHE miss out on the fun?!?)

Sunday, March 16, 2008

"A Stroke Of Insight", by Dr. Jill Bolte Taylor...

I received this link from a friend of mine...unfortunately, I can't post the video directly to CHEESE, but it is definitely worth the click to the site! The link is a short (about 20 minutes) video of a lecture by Dr. Jill Bolte Taylor, neuroscientist...she talks about the brain, her own stroke, and "nirvana"...it brought me to tears.

Enjoy...

Saturday, March 15, 2008

Occupying Space & Time...Like Air...Only Less Useful!...

Yeah, OK...so I'm trying to keep myself occupied this weekend while NOT thinking about my crappy MRI. Dr. She Who Will Not Be Named has assured me (direct quote from email), "Don't be freaked - we'll just get you going on the tysabri and you'll be good."...in response to my email, saying I was feeling a bit pensive, concerned and a "little freaked out"! But, there I GO again...thinking about that...sigh...

Note the new LINK (no, not the one in the picture) at the upper left side bar? THIS has been something I have worked on to keep myself otherwise occupied...a "chat space" just for CHEESE readers! I don't know how or if this will ever be utilized by any of you...I'd say, "Talk amongst yourselves", but you may already be DOING that in the gazillion MS Chat spaces and forums on the Web. And some people abhor the idea of sitting at a computer and TYPING to each other when the phone is within reach or an email will suffice. WHATEVER! I've put it up there anyway...


Depending on my upcoming schedule (whether at work, home, or dead), I have been considering posting specific "chat times" that I will wait by the chat window for anyone who wants to join in...if there's any interest in this, I might also include "chat time and topic", specific for MS readers (all two of you). Again, I have NO idea if any of you would consider this useful, helpful, or more particularly FUN...but let me know your thoughts. You can sign in anonymously, under your "pen" name, or any fictive name you can reasonably spell...or, to make it easier on the typical crowd here, YOUR SCREEN NAME YOU USE TO LEAVE A COMMENT. You do NOT have to sign up for anything, sign your real name, OR sign to donate a kidney...it's pretty simple really. But again, whatever...LOL


In other exciting news, I DID try to take off my right thumb nail today with my Dremel ! I had been searching and searching for the perfect thin and small shelf for my hallway without success...so...I got the "bright" idea to make one. After all, I'm actually pretty skilled with power tools and have (pre-MS) done many a remodeling project in my day.


I've decided I am far more skilled with power tools that could potentially take an arm or a leg off than I am with small, hand-held tools that spin at a rate of about 20,000 RMP's per minute. Yeah, you guess it...one little "slip" of the operating hand, and a dentist powered drill gets released into the wild...and, as is typical, lands on my thumb nail. AND, this is not the first time in my history with using a Dremel that I have DONE this!!! About 10 years ago, I really DID bore a Dremel-sized hole into my thumb and nail...please...let's all say it together...OUCH! Oh wait...y'all said "DUMB A$$" when I said "OUCH"...I HEARD you! **Step away from the tiny power tool**


Hopefully I will remember to tell you tomorrow the not-so-funny-in-the-moment-yet-highly-Hi-Larry-Us-now tale of getting up in the night to go to the bathroom and forgetting to LIFT the seat lid when I sat down to pee...and urinating, with warm uric acid splashing down to the floor before realizing what I was doing. I already know I will be pure H-E-L-L if I live long enough to find myself in a Nursing Home!!! But, I guess I've already told you this prime story I was reserving for TOMORROW, so we can all await with baited breath (where DID that saying come from?!?) what shenanigans I will pull between now and my next post...(I DO still have a small bit of Dremeling to do...perhaps I could ram THAT into my eye before tomorrow?)...

My Internet Neurologist...

And so it goes...emails today with Dr. She Who Will Not Be Named:


ME: I know I ask a lot of you...but if you get a chance today, will you pull up my MRI I just had done at (**CENSORED...to protect the innocent**)? I know I only play a doctor on the Internet, but I "think" my noggin might be lighting up again (yes, I have a copy CD)... :-( Been really wrong before, so would like a "professional" opinion...
Dr. SWWNBN: Just got your report back – you are lighting up; I’m not happy. Where are we with tysabri?
ME: You think YOUR not happy?!? LOL Could this be why I'm having such a rough go of it/relapse right now and cannot walk a straight line? And, BTW, I TOLD you I wasn't doing so hot/wasn't "right in the head" these days. (Clinging to my Internet Doctor Badge)

I don't know where we are with the Tysabri...(*CENSORED**) might know. I just completed all of the prereq's today that you ordered on 2/14.


And, as I said in the previous post...I DON'T NEED NO STINKIN' NEUROLOGIST! Just maybe a new brain...sigh...

Friday, March 14, 2008

Christmas In March...

Hmm...I'd have to say February and March of this year have REALLY been full of "surprises"...kind of like opening a neatly wrapped package containing a bag of poo!

I just returned to the hut a few hours ago after gracing my presence at Club Med for an ECHO of my heart (post Novantrone thang), yet ANOTHER MRI of my noggin (pre-Tysabri thang), and having a blood draw for CD4/CD8/CMP and HIV...yep...HIV, too. The Tysabri folks are now asking for THIS test as well (which makes sense since HIV can cause PML...the thing Tysabri initially got a bad rap for allegedly causing...I think that theory has been disproven at this point, however, as NOT being Tysabri alone that caused the PML).


I DO like my Club Med...at least the imaging and radiology peeps. They are always very courteous AND on time...kind of an anomaly in Health Care these days. And I KNOW them and they KNOW me...we have a working relationship. Very nice...


I always snag a copy of my MRI on disk before I leave the building with Elvis...after all...I DO play a doctor on the Internet, so I like to take a peek under my own hood BEFORE Dr. She Who Will Not Be Named has a chance to do so...no surprises that way. And, I'm getting pretty good at reading MRI's of the brain and spine. Today's photo shoot will be somewhere around my 20th one I've had...gotta learn something after THAT many rolls in the tube! (No, my doctor is NOT abusing the system...I was in a Rituxan study in 2005-2006...had one every month, whether I needed it or not!)


So, I took a gander at my MRI slides and...well...mind you, I am NOT a trained radiologist, but...it "appears" I am once again lighting up like a Christmas tree inside my head. Not good for those of us in the "know" about MS and MRI's...no one likes to hear the words "enhancing lesions", especially those two words used in the same sentence!


I fired off an email to Dr. SWWNBN requesting, when she had a moment, to stare at my slides herself and email me a ruling...I imagine I'll hear back from her sometime next week since today is Friday. Operative words in the email were, "when you have a moment"...she's a notoriously busy person...like a bee in the summer...seems to fly from one flower to the next in rapid succession.


But I think my observations are correct (I don't need no stinkin' neurologist!) and, unfortunately, make perfect sense...given the level of current disability/relapse symptoms I am experiencing. Guess I kind of hoped my MRI would be a shout out, "All clear!"...guess I was fantasizing maybe even my MS would be gone. Wouldn't THAT be a kick in the shorts?!? I suppose I should just be thankful they even FOUND my brain at all (oh, AND they found my heart on the ECHO, too...see Sherry...I am NOT a heartless beauch!).


For those of you still wondering about my manic moment regarding putting together some sort of quilt/tapestry representing those of us with MS, I STILL have that on my agenda...just simmering on a back burner for the time being. And for those of you wondering about my review of Joel Goldman's book, "Shakedown"? Well, I'm a SLOOOOW reader! It's coming...geez...seriously, cut me some slack here. From the looks of things, I've been busily playing a little game in my head called, "Pop Goes The Lesion"...I haven't had time for fun things like reading. :-)

Thursday, March 13, 2008

I'm Gonna Smoke A Turd In Hell For This...

I just know it...but I can't seem to STOP myself!

Maybe it's the fact it is MS Awareness Week and I have been inundated with letters from the MS Society? Or maybe Mercury has gone retrograde again...I don't know. I just feel extraordinarily "bitter" this week with all of these emails and letters from the "Society" asking for my money or to "join the movement" when I'm having great difficulty just WALKING with two canes! The only "movement" I have been successful with all week has been my bowels...


Today, I received yet ANOTHER fund-raiser letter from the "Society"...they got my name right THIS time at least...had to. It came snail mail to my house. They refer to me as "Ms. D----"...rather formal, if you ask me (but, you didn't ask me, so...). Guess I shouldn't really bitch about that...at least they didn't call me SUSAN this time!


The letter starts out letting me know it's MS Awareness Week (has this week actually been logged in somewhere in our National Registry and recognized by our government like a "true" week of awareness? Just wondering...). DUH...how could I (with MS) NOT already know that? Unless, of course, I've been living under a rock and/or HAVEN'T read any of the other gazillion mailers and emails already sent to me by the "Society" this past week. The letter (of course) asks me to "Join The Movement", AND offers me three ways in which I can do this:


1. "Display the enclosed MS static cling decal with (their) new logo on it with pride." (They let me know the decal is "easy to remove"...unlike my MS, however.)


2. "Fill out a short survey." AND, if I return it in the enclosed envelope, they will send me a 2008 MS Awareness Luggage AND Key tag! WooHoo!!! This got me excited...until I took a glance at the survey, which is sponsored (or as it says on the form, "made possible in part by support and educational grants") by SERONO, PFIZER, GENENTECH, BIOGEN IDEC, NOVARTIS, AND TEVA NEUROSCIENCE...every ONE of the big PHARMA are represented who make MS drugs. I think these drug companies could have passed the hat amongst each other and offered me a bit "bigger" prize than a luggage tag for filling out their survey! Like maybe a trip to the Bahama's or something? All expenses paid??? Gawd knows my insurance company has certainly paid them enough in the past 5 years for a trip to effing DISNEY at the very minimum! Phooey...bad taste in my mouth...must be the bile of a bitter woman rising.


3. "Give a gift." After all it is (my) "your generosity that helps people with MS move their lives forward". Hmmm...I didn't know my money was THAT powerful. Oh! And, if I can give a gift of $30.00 (or more), they will send me my "official 2008 MS Awareness Tote Bag--perfect for when (I'm) you're on the move!" It comes complete with the "Society's" (unaltered) logo stitched on the side and...you guessed it..."Join The Movement" embroidered under it. Of course, in small print, they let me know that this "offer applies to this appeal only, and expires June 2008, or as long as supplies last". I wonder just how many of these babies they'll have stacked in the store room after this "appeal" runs out?


On the back of the survey portion of the letter, there is a small graph at the bottom which tells me "We honor your giving!" and lets me know 78% of my gift will go to Programs/Education/Research, while 22% goes to Fundraising/Administration. Actually, compared to the major PHARMA companies, these percentages are pretty good...BIG PHARMA spends about 36% per year just on "marketing" alone, while spending literal MILLIONS on the salaries of their CEO's. And while I'm on THIS soap box, the pharmaceutical company's cries of "but your drugs cost so much because we have to spend so much on development and research" is a load of crap! What they spend on R & D (research and development) falls well short of the profit margins/percents each year and UNDER their marketing expenditures. Yeah...THERE'S my trip to DISNEY! But, as usual, I digress...


OK, now that the bile is settling in my gut (thanks in part to a large grant from the makers of PROTONIX, the GERD medicine I take religiously because I'm too stoopid to eat right, exercise, lose weight, and NOT have GERD!), I will say THIS in defense of the "Society":


Their website was very helpful to me when I was first diagnosed with MS...I had NO IDEA where to turn for information and "they" were there. Those first years of MS Walks and other fundraiser activities gave me some sort of active "club membership" and a sense I was not alone. I have attended a few of their educational programs done locally here in Seattle and, for the most part, they HAVE been that...educational. I can't entirely hold them in bad light for going to bed with BIG PHARMA...sometimes it's important to choose your friends wisely AND friends with deep pockets can be very useful in spreading a message...just as long as one is able to stay true to "their" message and be able to sleep each night with a clear conscience. And, the "Society" DOES do a great job at cheer leading...perhaps a bit on the sappy/overboard/rah rah you can do it/beat your MS side...but some folks need to believe that when they are first diagnosed. The rest of us eventually have accepted the fact our Pom Pom shaking and ability to do the splits WILL diminish with continued disability REGARDLESS of how "positive" or "negative" we view our MS...like all good things, denial fades over time.


COULD the "Society" do more for those of us with MS? You betcha. COULD I do more to promote MS Awareness? You betcha. WILL I continue to send the "Society" my left over change each year? You betcha. Why?


Because, as I've said before, I'm not looking for a free ride when it comes to my MS and I do believe SOMEBODY should take the reins and do what they can to figure out how to end this crappy disease...and it all boils down to that grand, American dollar...that, and having a disease the public CARES enough about to search longingly for a cure. Unfortunately, MS is NEVER going to be that disease...we don't die from it, unless MS eventually just sucks our will to live! We don't lose a breast from MS, we don't have erectile dysfunction (or at least not en mass...because well over 50% diagnosed ARE women!) from MS, we don't lose a testicle from MS, and we never, ever BEAT MS, so there's no "glory win"...no "whew, that was a close one", no survivor "hey look at me? I fought this with gut and sinew and now I'm _____-free" (fill in your favorite curable, but scary disease in the blank). The "Society" DOES still represent Multiple Sclerosis, knowing full good and well the PUBLIC doesn't...John Q. Public is too busy wearing pink ribbons and keeping our breasts intact...no time for a chronic disease like MS. And still, the "Society" pushes forward the message.


So, I'm off to fill out that check to the "Society"...in spite of my trashing of their lovely logo...because I NEED that tote bag! It will go well with my two canes...and I can certainly use it on my trip to DISNEY...made possible in part by support and educational grants from the School of Hard Knocks...