May Old Aquaintance Be Forgotten...And A Whole Lot Of Other Crap, Too!...

ʃɪd ɑld a.kwe̙n.tæns bi fɪɾ.ɡɔt,
an nɪ.vɪɾ brɔxt tɪ meind ?
ʃɪd ɑld a.kwe̙n.tæns bi fɪɾ.ɡɔt,
an ɑld læŋ sein ?

CHORUS:

fɪɾ ɑld læŋ sein, mɐ dɪɾ,

fɪɾ ɑld læŋ sein,

wil tek ɐ kɔp o keind.nɪs jɛt,

fɪɾ ɑld læŋ sein.

an ʃir.li jɪl bi jʊɾ peint.stɔp !
an ʃir.li al bi mein !
an wil tek ɐ kɔp o keind.nɪs jɛt,
fɪɾ ɑld læŋ sein.

CHORUS

we twa heː rɪn ə.but ðɪ brez,
an pud ðɪ ɡo.wɪnz fein ;
bɪt wiv wan.dɛɾt mo.ne ɐ wi.ɾi fɛt,
sɪn ɑld læŋ sein.

CHORUS

we twa heː pɛ.dl̩t ɪn ðɪ bʊɾn,
fre mɔɾ.nɪn sʊn tɪl dein ;
bʌt siz bɪ.twin ʌs brɛd heː rɔrd
sɪn ɑld læŋ sein.

CHORUS

an ðɛrz ɐ han, mei trʊs.ti fiɾ !
an ɡis ɐ han o ðein !
an wil tek ɐ rɛxt ɡɪd-wʊ.le-wɔxt,
fɪɾ ɑld læŋ sein.

CHORUS

     Ah, the original Scottish translation (or as "original" as it gets) to the poem by Robert Burns which began our current New Year's Eve singing at the stroke of midnight..."Auld Lang Syne".  Directly translated, it means "old long since", but we "Mericans" traditionally believe it to translate as "days gone by".

     It has not yet hit the stroke of midnight here on the West Coast, Pacific time...I doubt I will still be awake by then to "ring in" the New Year.  I'm pretty exhausted from my Day Three work release program!

     But I did want to at least acknowledge the traditional passing of yet another year into the new...the torch being handed from good ol' 2006 to 2007.  I honestly can't say I'll miss 2006...frankly, I'm a bit happy to see it end!  But I must admit, I'm a bit anxious about 2007, too...

     I won't bore you with a recap of my 2006 adventures...if you're that hard up for reading, hit the archives of this journal.  I pretty much detailed every time I passed gas during the year or even THOUGHT about it!  But what I will say is this...2006 came with many life lessons, some of which were welcomed and some that were not.  A pretty typical year, all in all, when I phrase it like that...

     My wish for 2007 (and my mother always said, "be careful what you wish for because it might just come true") is that we ALL find our way "home" to a place that brings us comfort and peace...at least some of the time.  I won't wish for an end to Multiple Sclerosis...hell, I won't even "wish" for better health for myself or for you.  But I DO hope for (at the very least) moments of "health", moments of "happiness", moments of "peace", moments of "unrestrained joy", moments of "love", and moments of finding "home"...wherever that may be in each of our lives and hearts...and just enough balance with all the other CRAP that shapes and molds our lives...you know, the tears, heartache, sadness, and fear.

     So, as "Auld Lang Syne" (Old long since/time goes by) in 2007, may we all find that which fulfills us and keep up the good fight...whether you have MS or not...whether you believe in making "wishes" or not...whether you break your own New Year's Resolution the first week of January, 2007...or not!

Happy New Year... 

Tired...

     Day Two of my return to work...I'm so tired I've almost forgotten Day One!

     Oh yeah...I went back to work yesterday on my "reduced schedule plan" decided upon by a corroboration of my doctor, my immediate boss, and the "wonderful" and "charming" HR Department (you have figured out by now when I'm being serious and when I'm being sarcastic, haven't you?!?).  As they say in dog obedience school, "Leave it", so I'll just let that issue "sit"...LOL

     Anyway, it was great to be back among the people I call "home" and my coworkers greeted me with a warm reception...cane, staggering, flushed cheeks, and all.  My immediate boss was preparing to leave the country for a period of a few weeks, so it was important that I reestablish myself before her departure.  Within a matter of hours (and after reading mail, emails, hugs, and explanations), I found myself joining right in the "bitching and moaning" group about this or that and settled right back into the familiar!  That's just how we "govmet" employees do things...nothing is EVER satisfactory...

     My first project is reading a stack of 50 cases and completing 4 page assessments on all of them.  The idea is a bit daunting, but I decided I would simply pace myself and try to complete the task by Monday...today is Saturday, and I'm well over half way through...but golly, am I TIRED!!!  I find myself coming home and collapsing on the couch (the one I begged to have my arse airlifted off of to return to work?!?), too tired to even scold Meha (cat) for her bad behaviors (she just once again jumped up on the computer printer, causing me to have to lock her out of the room...if you listen closely, I'm sure you can hear her pathetic cries on the other side of the door!).

     I came home late this afternoon (of course putting in more hours a day than Dr. She Who Will Not Be Named released me to do) to find a plant nearly uprooted and on the floor and several items knocked off the countertop...the one place I beg the cat NOT to go.  I can't tell if she was more disturbed having me home all the time or now that I have been gone for two days?  I tend to think it's still all part of her plan to exert her force of world domination over me and wear me down so I will do her bidding...

     Anyway, after cleaning up the cat mess, cleaning out the cat box, and feeding the cat, I now feel too exhausted to do much of anything else.  I'm thinking of returning to my couch...and pondering the idea of changing my Feng Shui plan to INCLUDE my backside becoming a permanent fixture in the living room!  It's worth a try...because if this return to work plan fails, I'll be right back where I started...staring at four walls and WISHING I were back at work...vicious cycle, eh?  LOL

It's Been ALL Uphill...

     Just when I "thought" everything was in place for me to return to work tomorrow on a "light duty" status, I was broad-sided today by my employer...since far too many people are getting sued for the content in their blogs, suffice it to say shots were fired, but I ultimately "won". I'm STILL heading back into my office on Friday!

     What I CAN feel safe (and comfortable) in writing about on BRAINCHEESE is my belief how absolutely ignorant the world at large is about Multiple Sclerosis.  It does not seem to be enough to have to LIVE with MS and its plethora of symptoms on a daily basis...those of us DIAGNOSED with the disease must also suffer the consequences of a society full of people who lack a basic understanding of not only MS, but how difficult it is to live with what is termed a "hidden illness".

     Now, I have to say currently, my MS is no longer "hidden"...it's pretty front and center and affecting most of my daily living/daily activities.  I've got a cane and a limp...I look rather "drunk" sometimes when I walk...can't and don't look above my head or to the right or I appear rather green around the gills and COULD possibly throw up on you!

     But if I were sitting quietly with you directly in front of me, you would not know I have multiple lesions in my brain and a large lesion in my spine...you would not know I have Multiple Sclerosis...and frankly, you probably wouldn't care.  You'd have no idea what my struggles are or what I endure on a daily basis.  There are no outward scars, casts, bones, radiation burns, deformities, etc.  Unless I told you, NO ONE would ever know I have MS.

     If there is one thing my MS has taught me, it is TOLERANCE...and I'm not referring to tolerating my MS here!  I'm talking about tolerance for OTHERS and the many struggles and things about other people that may not be obvious to my eyes.  I find myself now (post diagnosis) viewing others with more compassionate eyes...I find myself not "judging a book by its cover" as much as I used to...I find myself trying to understand the "hidden disorder" in all of us, whether it be someone who is angrily yelling for no apparent reason or someone who cuts me off in traffic deliberately.  I find myself wondering what motivates each of us to do or behave the way we do...and if I can, I try to apply compassion to the situation.

     We ALL have our own story, our own reasons, our own rationales for why we do the things we do...whether this is the result of a hidden or obvious illness or just the result of our past experiences.  And I'm not offering these "reasons or past experiences" as excuses for BAD behavior, but I AM saying there's always a motive.

     My motive today was to return to work and to return to work with my MS not so hidden.  This is not the "norm" for how I would return to work...I believe my current situation and status could be very uncomfortable to those around me.  How I present today forces others to really look at my MS and maybe even to view me a bit differently...it may strike chords of vulnerability, sadness, or even anger in some. 

     I cannot predict or know exactly how others will react to my current situation.  But what I can predict and control is MY reaction to them.  I can "fight" for what is fair and just when I need to and I can also "educate" those who are truly motivated to learn and understand.

     What seems to be the hardest lesson for me to master is fighting with compassion!  I kind of lost the "compassion" element in my battles today (LOL)...but maybe...just maybe in my fight, I have managed to pave a road that will be much smoother for the next person with MS to travel upon.  Maybe...just maybe...if nothing else, "someone" has learned just because I have MS, it does not mean I will lay down without a fight! 

Going Back To Work...Kind Of...

     Well, after much clawing and gnashing of teeth (mostly done by Dr. She Who Will Not Be Named!), I am somewhat semi returning to work on Friday!  I have been released to return to "light duty", which essentially means I will be stuck in the office reading cases or doing Quality Assurance reading...BUT...I WON'T BE STUCK AT HOME!!!  There truly is a God.  LOL

     As you might imagine, after being sentenced to a home bound status by my symptoms well over a month ago, I've grown a bit "buggy".  So, the idea of returning to a place that has actual people and people I LIKE just thrills me.  And on top of that, my job is really something I enjoy...even though I've not been released to actually DO my job yet!

     "Why?" you might be asking.  Why am I not being allowed to return back to full status?  Well, here's where I have to admit to "all y'all" I might have been a tad bit off on my earlier theory about my dizziness.  It is TRUE, I did feel some fairly immediate relief of the constant dizziness and nausea I had been having once I started the antibiotic.  But, I still have some vertigo (especially looking up or to the right) that makes driving a hazard.  I still think my constant dizziness WAS/IS some sort of infection...but I have to hang my head and admit my VERTIGO (AKA, spinning sensations) may be a symptom of my MS...two completely different factors.

     Then there's also this problem I'm still having with running a low grade fever in the afternoon and evenings...that does NOT seem to be affected by the antibiotic unfortunately.  Lab work I had drawn on Friday of last week looked pretty normal, except for something called an ESR (we used to call it a SED rate...it measures inflammation in the body, but it's not a specific test for anything) which was elevated.  These are concerning factors and I am now scheduled to see an ENT doctor (at the suggestion of my primary care nurse...I don't see a primary care doctor!) to see if there might be some truth to the idea I am having some kind of sinusitis or ear problems along WITH MS.  Because we all know, ya can't blame MS for EVERYTHING!  LOL

     The problem that occurs in the afternoon and evening when I am running a fever also is my gait changes.  I imagine this is simply from the fever affecting my nerves in my left leg, but I get more "stumbly" and forget to pick up my foot...my balance gets worse and I have an increase in left-sided neck and shoulder stiffness/headache...oh, and there's that little thing called "fatigue", too.

     So, as you can see, I'm STILL falling apart but maybe at a slower pace!  LOL  But staying glued with my arse to the couch no longer seems like effective treatment either...AND, it has really messed up my Feng Shui in my living room!

     It feels "right" to give this going back to work thing a try at this point.  After all, I've got to figure out at some point whether or not I can do it, so why NOT now?  And it will do my mind a wealth of good to be around the people I feel most supported by...my good-natured coworkers.

     So, that's the plan as I know it today...I have no idea how Meha (kitten) will react to being home alone again.  I just assume she will resume her plans of taking over the world with national leaders...

Well, I'm Glad THAT'S Over With...

     I'm sure you all probably think I'm referring to Christmas by the title of this blog, but I'm not!  I'm actually talking about my absence from "Cheese"...LOL

     I DO hope the holidays have brought each and every one of you all the "gifts" you had hoped for...whether it be material things, good health, or anything else you could imagine.

     Yes, I have been missing in action from BRAINCHEESE for almost a week...but I'm somewhat happy to report it has NOT been because I was hospitalized or hit by a bus!  We did have yet another brief windstorm here in Seattle late last week and I DID lose power briefly...but this was not the cause of my several day hiatus from writing.

     Last week began with a continuation of the horrible dizziness/vertigo/nausea I have been having, as well as developing a low grade fever every day.  As you might imagine, I have felt pretty "crappy" and began to lose hope my condition would EVER resolve itself...this resulted in a fairly significant "mood" change for me (if only I had one of those mood rings from the 70's...you know the one's I'm talking about???  I'm sure mine would have been BLACK!).

     Anywhozit...I became so discouraged to the point I simply stopped eating.  Partly because my nausea improved if I DIDN'T eat, and well, partly because I had lost my appetite completely.  You can imagine after a three day fast, my mind was just not too centered!  Which neither assisted my "mood" NOR my condition (and you KNOW if a fat girl stops eating, death could be knocking on the door! LOL).

     I had a "comin' to Jesus" with Dr. She Who Will Not Be Named...nothing was seeming to help.  Then Friday morning, I awakened from a bizarre dream (details, of which, I will not bore you with!) and recalled my history of having severe ear infections as a child and early adulthood...this got me to thinking.

     Long story short (or considerably longer than you might have wished for), I convincedDr. SWWNBN to "try" a round of antibiotics, thinking perhaps my fevers were the result of an underlying upper respiratory infection.  I am relieved to report I believe my suspicions may have been right (hasn't "cured" me, but I AM improved!)!  My dizziness has decreased markedly and, although I can't honestly report NO fevers (since I did run a tiny one yesterday again), even THAT has improved!!!

     So, I must go now and begin to prepare the VERY LARGE AND SUBSTANTIAL BILL I have promised to send Dr. SWWNBN "if" my theory proved correct...boy, do I just HATE to be correct...! LOLLOL

Another Storm?!?...

     "We" are being told yet ANOTHER wind storm of lesser magnitude is headed toward the Puget Sound/Seattle area...winds are ONLY supposed to gust between 20-40 mph THIS time.

     Unfortunately, with a tree still laying across my back yard, a tree STILL laying on stretched power lines a few houses away, and many homes STILL without power in the area, "if" my power goes down this time, it will most likely be through the weekend.  And, since I am homebound, this means no computer access...I think you can understand where I'm going with this!

     SOOO...if "Cheese" goes down for a few days, have no fear...I am certain I will still be alive and NOT in a hospital this time!  LOL  I've already NAILED my front door shut so neither 911 nor Dr. She Who Will Not Be Named will have access to the interior...unless, of course, my windows get knocked out by another big tree...then I guess, it's a free pass for all, including looters.

     I am also NOT feeling the best having stopped the Meclizine for the vertigo...it's back...so sitting at the computer trying to read a screen for more than 5 minutes is a killer.  May I suggest bookmarking the list of "reads" off to the left of this page to fulfill any of your humor/MS/holiday needs until I return (or, if I never leave...they're still great sites to read!)?

     Off to locate the candles and flashlights again...just in case...

The Height of THe Ridiculous...

     One of you loyal "Cheese" readers (and you KNOW who you are!) recently asked me if I woke up laughing from my dreams?  And still, another (and you know who YOU are, too!) responded recently with a lovely email about how "Cheese" had helped bring back a "sense of humor" to the madness of their MS.  I blush in the shadow of your praise...and it is unfortunate for the REST of you that these types of emails only spur me onward in spewing the twisted tales in my brain and splattering them on the Internet for all to read!

     Unfortunately, I don't feel particularly "funny haha" today..."funny peculiar", yes...but not the laughing kind.  I've fallen a bit under the weather, so to speak (and right now in the Pacific Northwest, WEATHER and being under it is about all we talk about) since stopping my vertigo medication and my concentration is about as "deep" as a Britney Spears concert...I DO have underwear on however, for those of you wondering.

     But in an effort to maintain the theme of brevity, I am posting one of my all-time favorite "oldies" poems by Oliver Wendell Holmes...I await the copywrite suit with baited breath...It is the same poem I emailed to my now favorite "truck driver" today:

The Height of the Ridiculous By Oliver Wendell Holmes 1830

I WROTE some lines once on a time
In wondrous merry mood,
And thought, as usual, men would say
They were exceeding good.

They were so queer, so very queer,
I laughed as I would die;
Albeit, in the general way,
A sober man am I.

I called my servant, and he came;
How kind it was of him
To mind a slender man like me,
He of the mighty limb.

"These to the printer," I exclaimed,
And, in my humorous way,
I added, (as a trifling jest,)
"There'll be the devil to pay."

He took the paper, and I watched,
And saw him peep within;
At the first line he read, his face
Was all upon the grin.

He read the next; the grin grew broad,
And shot from ear to ear;
He read the third; a chuckling noise
I now began to hear.

The fourth; he broke into a roar;
The fifth; his waistband split;
The sixth; he burst five buttons off,
And tumbled in a fit.

Ten days and nights, with sleepless eye,
I watched that wretched man,
And since, I never dare to write
As funny as I can.

A Doctor Who Makes House Calls?...Seriously...

     Just when I thought my life could not POSSIBLY get any more bizarre, I opened my eyes from a deep sleep and was dropped into "today".

     Today began with the sound of yet another very large tree crashing down a half block away and falling on power lines just beyond my home...a school bus had just passed by the area right before the tree fell and I heard the somewhat hysterical voices of females outside chattering...from the sounds of things, it had just missed the bus (prayer sent up to all children, not just the ones riding the bus).

     Closer inspection revealed a "line" was actually laying across my driveway...my neighbor spotted this immediately and called the already over-stressed power company (there are still several thousand without power in the Puget Sound area from last week's wind storm).  Come to find out, it was just a cable TV line going to the neighbor's house and not a "live" wire.

     But, realizing I COULD lose power at any moment, I scrambled to shower and quickly roast up my home to a whopping 75 degrees "just in case" (power has remained on all day so far, much to my amazement)...the lines are laying almost on the ground and all neighbors involved fear they could snap at any time...not the neighbors snapping, the wires!

     There was a series of phone calls returned about the tree laying across the BACK yard...tree removal companies are back-logged for over a week just trying to get the trees out of HOUSES they have fallen on...my situation pales in comparison...the tree is just precariously balancing on a broken fence on a hillside up against the neighbor's house.  No big deal in the big picture of things.

     Then, there was the email from Dr. She Who Will Not Be Named responding to my rants of late last week regarding her potentially trying to kill me again with (now) IVIg...she wanted to see me in her office today.  Her wonderful assistant emailed me with a time to come in and I responded in kind via email with a plan to get there either by friend or cab, but advised she should rely on cell phone service for any changes as I felt pretty certain I would be losing my electricity at some point today.

     While in my frantic shower, my cell phone DID ring...it was Dr. SWWNBN sweet assistant asking if she could change the time of my appointment to later in the day?  Of course, I obliged this request...after all, I WAS rather sneaking my way onto the good doctor's already busy schedule.  She IS a "in high demand" neurologist!

     No sooner had I turned my shower back on to rinse the soap out of my hair, but my cell rang again.  With soap now in my eyes, I fumbled to find the cell and answer it...it was the voice of Dr. SWWNBN...THIS could NOT be a good sign...and, of course, I worried I was now naked and on camera "somewhere".

     I tried to sit myself down on the edge of the tub so as not to fall down from the vertigo and try to have a conversation with Dr. SWWNBN...what could she POSSIBLY want?

DR:  "I'm just going to come to your place rather than you trying to get a ride to my office.  It's easier for me.  Tell me where you live?"

     OK, where do I even BEGIN with this?  There are just sooo many angles of "wrong" here! 

     First, I'm usually the one who "invites" people to come to my home...and I didn't invite her.  Frankly, I didn't "invite" her the day I was hospitalized either...and fortunately, she couldn't FIND my home that day...911 had to track me down...bless their hearts.

     Second, a doctor making a HOUSE CALL?  That crap only happens in very old movies...and I don't recall those movie doctors EVER being a specialist!

     And third...I managed to cancel the Home Health Physical Therapy/Safety inspection of my home she had set up upon discharge from the hospital...I know, I know...I promised her.  So I'm a weasel of my word!  She was out of town at the time and I just thought I'd "get away" with it and no one would be the wiser...particularly NOT Dr. SWWNBN!  I'm still not sure she knows they've never been here...

     I tried my best to talk her out of it...I stuttered, I bargained, I pleaded (very unlike me to stoop THAT low), but she would NOT be deterred.  She hung up the phone on me, saying she'd, "be there around 4:00", and that was that...panic set in...I could only hope, once again, she wouldn't be able to FIND the address.

     Much later in the afternoon, my doorbell rang...I considered not answering it...I REALLY did, but I knew this would only create more problems for me in the future.  Dr. SWWNBN stood proudly on my steps...even DWA (Driving While Asian), she had managed to locate me THIS time!  I somewhat hesitantly and begrudgingly invited her in.

     She asked me several questions about my headache/fever/pain (wondering if I had meningitis...I've HAD meningitis before, so could have easily told her this was not the problem now), had me "walk" for her, did the "follow my finger" test, etc.  It was a real house call.

     Relieved I did not have meningitis, she decided I am having an adverse effect/cholinergic effect from the Meclizine I have been taking for my vertigo.  I am supposed to stop taking the one drug I "think" may have been helping my dizzies...this is a bit concerning for me, but I will do as the good doctor suggests.

     Now, at this juncture, I'm sure most of you are slapping your foreheads and WISHING you had a neurologist that was so friggin' attentive...I'm sure you'd slap ME if you could!  Some of you may drive many, many miles just to SEE your doctors for 15 minutes...most of you couldn't even GET your neurologist on the phone if you tried for two days redialing.

     What may be very difficult to understand about ME is, I am an extremely private person!  I know...this sounds utterly moronic coming from someone who writes a BLOG!!!  But, I am what I am...neurotic and VERY private...oh, yeah...and did I mention the words, "control freak" yet?  Well, I am.

     And I AM very thankful to have such a gifted and talented team of medical professionals working with me...they certainly earn their measly co-pays and insurance stipends.  And, if I were to tell the "honest" truth...I DO believe I may have one of the best neurologists in the nation who looks after me, even somewhat like a mother hen, when I'm too stupid to even know what I need.  I have been wonderfully blessed beyond measure to have crossed paths with her and eternally grateful for all the care she (and the rest of my "team") provides.  BUT, being THAT honest is painful, so strike that paragraph! LOL 

     I don't think I can forgive her for looking in my refrigerator though, to make sure I had food...she might as well have asked to see my underwear drawer!  At this point, she feels more like my proctologist than my neurologist! 

     And considering I can be quite an A$$ at times, the feeling is probably well deserved and appropriate...

How Did I Get So Lucky In Life?...

     It started with a phone call the day I was hospitalized.  My good friend and neighbor, DC, placed a call to Ms. Merrinuts (of course that's not her real name...on "Cheese", all names are changed to protect the innocent!), requesting her assistance in installing a handrailing in my stairwell...you see, since I moved into my home, this minor project had never yet become a necessity.  I could, after all, WALK on my own without assistance...so like everything else, this project was "talked" about, but never completed.

     DC was there when the the fire department showed up now over a week ago...she saw the difficulty I had getting up my stairwell with them...she dialed another dear friend and coworker, Ms. Merrinuts...the "Go To Gal".  It's a well-known fact, if you want something done right and done right the first time, ask Ms. Merrinuts...after all, she's dayum near perfect!

     Ms. Merrinuts and hubby, Jorge (pronounced "whore hey") made the decision unbeknownst to me to take on this project...a Christmas gift, she called it...to buy the materials, stain the wood, and install a stairwell handrail FOR me.  Note the photo...and, of course taken of their backsides to protect their anonymity!

     I got a call this afternoon from Ms. Merrinuts asking if this evening would be a good time to come by and install my new railing?  Not feeling the best and ALWAYS having difficulty accepting "help" from others, I hemmed and hawed a bit, but eventually agreed to the plan...they WERE going to be company in what has become a very non-stimulating world in my home!  How could I possibly pass up the opportunity to spend time with one of my favorite peeps?

     I sat on my perch with my head tilted to avoid the "bad" vertigo of looking up the stairwell and watched as Ms. Merrinuts and Jorge GLEEFULLY installed my new railing...they laughed with each other...they made me laugh...they even appeared to ENJOY the project.  The entire evening was quite a "gift"...even if they hadn't installed the handrail. 

     For a few hours, I got to "forget" how awful I felt...I got to pretend to be "normal" and hang out, in spite of my head pounding and feeling dizzy at times.  I got to laugh...I was afraid I had forgotten how to do that...laugh.

     I believe tonight may have been one of the best, all-time, favorite Christmas gifts I have ever received...a true appreciation for FRIENDSHIP brought home to me by good friends...there's just no toaster oven or piece of jewelry under the tree that can top that...true friendship...

     In the words of my "hero", Dr. Seuss, let me plagiarize from the wonderful holiday movie, "How The Grinch Stole Christmas": 

And the Grinch, with his grinch-feet ice-cold in the snow,

Stood puzzling and puzzling:  "How could it be so?

"It came without ribbons!  It came without tags!

It came without packages, boxes or bags!"

And he puzzled three hours, till his puzzler was sore.

Then the Grinch thought of something he hadn't before!

"Maybe Christmas," he thought, "doesn't come from a store.

"Maybe Christmas . . .perhaps . . .means a little bit more!"     

Not The Holiday I Had Planned?...

     Lying around feeling sorry for myself has become a full-time job...too bad I'm not getting paid for it...I'd be RICH after these last several weeks of being homebound!

     My most recent begrudging, self-centered theme in my life has been, "This is not the holiday I had planned"...sounds simple enough on paper, but the theme is actually quite complex in my mind.  It not only incorporates a "holiday", which by anyone's standards, is "supposed" to be a happy and joyous time, but it also incorporates ME/MS and NOT having something as well as "planning".  So, as I have tried to dissect this theme to it's true meaning, I've stumbled (quite literally at times!) across some interesting ideas I have harbored for most of my adult life.

      First, let me say as a pseudo-Christian/Jew/Pagan, this time of year has ALWAYS been conflictual for me!  I've never really known WHO'S team I should be playing for in the realm of "religion"!  LOL  I was raised in the "Be Dipped Or Be Damned" Church of Christ (Christian), but spent a few adult years dabbling in Judaism (Jewish), followed by an intensive religious studies program in Wicca (Pagan).  For the past 10ish years, I have just considered myself "spiritual", and have adapted various things/concepts from all THREE religions into my spiritual practice.  With that in mind, I've become a bench warmer for Jesus, Moses, and Diana during the winter holiday month!  LOL  I've made my own holidays based on all three religious teachings (which, if anyone really wants to boil the pot down to the meat, all THREE religions teach compassion, love, giving, and doing for others...different teachers, same words).

     The winter holiday (call it Christmas/Hannukah/Solstice...whichever fits your fancy...I'll stick with "winter holiday" so as not to offend!) has always been a time of giving for me...I love to give to others...it warms my soul as I'm sure it does yours.  I bake, I cook, I wrap presents, and I try to be centered in the Spirit of love and compassion for those around me.  I delight in giving "secret" presents to someone in need and I relish in finding the exact thing my niece and nephew might want on their list...the "thing" I know my sister might flip a gasket over if her children DID receive it...like BUG AQUARIUMS, etc!!! LOL

     Because of my MS relapse, I have been literally BOUND to my home and unable to shop, even at the grocery store for necessary baking goods...not that I am fit to stand in the kitchen long enough to DO the baking anyway...but I can't even get out to PURCHASE said items.  My usual 50 bags of Grandma Goldie's Holiday Snack Mix, which I make every year for my coworkers, has been left undone...the recipe sits longingly on my counter top, just waiting to be fulfilled...but I can't.  Presents I would have normally already purchased for friends remain in the stores as even online shopping has been difficult.  I have been unable to DO the one thing this winter holiday that I have always done because MS has robbed my mobility...and this saddens me deeply...any attempts at "planning" have been thwarted as MS has made a very unpredictable situation in my life right now.

     I have also been living in fear these past several weeks...because of the unpredictability of my MS and the basic "unknown", fear has replaced any sense of holiday spirit I might have otherwise felt.  I have felt constricted and unable to "give" what little energy or emotion I have stored up inside myself...I have been on conservation mode for several weeks, looking inward instead of outward...trying to preserve myself.  This alone, is not necessarily a "bad" thing...but during the winter holiday time, it DOES go against my basic instinct.  And, I think it also contributes to my self-centeredness and contempt for my MS!  You know the old saying, "What we see is what we get?"...I think it might be time to change my focus off of "me" and onto "thee" for a while...I've grown sick of "me", after all!  LOL

     I cannot deny my feelings of sadness at this time of year...my MS holiday "present" was not welcome.  But what I CAN do is try to shift my focus and enjoy what I DO have...good friends, a wonderful job, my ability to still write/use my mind, and an abundance of "wealth" in my life so many do not have this holiday season.  I even have electricity in Seattle...something STILL nearly 30,000 people do not have since the windstorm!  Yes, I still have a very large tree down in my yard, but even this, too, shall pass.

     And what I usually would be applying to others...compassion, giving, love, and doing...the teachings I center my spiritual beliefs on...I need to learn to apply to myself and my MS.  Instead of self-loathing, I will try to apply compassion for myself.  After all, I didn't choose this disease...it chose me, and it is not my "fault".  I can continue to give and do for myself the things that bring me joy and cease feeling so CONSTRICTED...so confined within my MS.  This means reaching out to others and ALLOWING them to assist me and also DOING the things I need to do to keep the health I have (like not be so "bitchy" with Dr. She Who Will Not Be Named when she suggests things to "help"! LOL).

     And, I can also LOVE myself for who I am...I don't have to embrace or "love" my MS, but it is a very big reality of my life right now...one, I am sure at some point, I will feel less discomfort with.  I can love that part of me, when feeling well, that DOES interact with the world and the people around me with compassion and caring...I can love the part of me that WANTS to feel joyous during this holiday season.

     It's funny how just writing this down has already improved my "mood"...and now, I will go lie back down in an attempt to improve my health!  Here's wishing you ALL a happy holiday season...whatever your beliefs, your religion, or your values...   

So, What The Heck IS IVIg?...I Got It And I STILL Don't Know!...

     Voodoo science...at least that's what I "think" Dr. She Who Will Not be Named called it.  But, then again, I was a tad bit "out of it" during most of my hospital conversations with her, so maybe I called it that! LOL

     A few of you have inquired via email wanting to know exactly what IVIg is, so I thought I'd try to share with you what MY explanation is...at least what a nice nurse printed out from the computer for me when she overheard the following conversation between a friend of mine and the stuporous me while in the hospital:

Friend:  "So, what exactly is that (pointing to the large bag of fluid running in my arm)?"

ME:  "Hell if I know.  Something she's (doctor) calling IVIg.  Personally, I think it could be poison (said with my best paranoid flare).  She's tried to kill me before, ya know?"

     Now you may understand WHY sweet Nancy Nurse quickly printed a copy of information from the website, www.cidpusa.org/P/ivig.htm !  And since this information is clearly under copy write, let me plagiarize with the best of 'em.

     So, what I gather I received for 5 days while being held hostage at Club Med was a bunch of bags of antibodies called IgG.  The "information" says this is a plasma product obtained from anywhere between 3,000 and 20,000 (seems kind of a high number to me) donors.  "Allegedly" (now dabbling in legal terms) people with auto immune disorders (such as MS) can be deficient in these antibodies, so mega doses are infused to "create" said antibodies...somehow IVIg "allegedly" inactivates abnormal autoantibodies being formed.  IVIg actually stands for, "Intra Venous Immune Globulin"...trust me when I say I had those letters meaning something a whole lot sinister, but not fit to print!

     And that's all I know...seems like I should know more, but I don't.  Seems like I should MAYBE be a bit more concerned, but I'm not.  What I DO know is I now have a splitting headache (which I've had since Wednesday), have been running a low grade fever, and have a very bad pain in my neck (literally).

     Are the MS symptoms the IVIg was supposed to work on any better?  Maybe...it's really hard to tell with this headache and cramping in my neck.  I DO think I will ask more questions next time before I sign up for any "Voodoo Medicine" in the future...of course, maybe I DID ask questions, but forgot the answers.  LOL

     Back to the couch where I belong...

Armageddon In Seattle...

     First, it was the floods, the sewer backing up, then the freezing ice and snow...last night, it was the wind and power outages all across Puget Sound...and I won't even MENTION an MS relapse/hospitalization in here! LOL  I'm anxiously awaiting the plague and locust infestations.

     **NOTE**  AOHELL is randomly deleting photos from this journal (as pointed out by Saint EB)...photos were here last night when I posted, but gone today...nasty emails being sent to the powers that be!

^^^THIS is what came crashing down in my back yard around 1:30AM...a very large tree that narrowly missed my home, but unfortunately DID scrape the neighbor's house next door.  It is now 8:30PM the following day, and electricity has just been restored in my "neck of the woods".

     Meha (kitten) and I have been huddled under blankets to stay warm as I have electric heat...which I obviously have NOT had for about 20 hours!  It's also supposed to get below freezing here again tonight with rain/snow shower mix...WHAT THE HELL IS GOING ON?!?!  Ahem...excuse me.

     Oh yeah, and just for the record...I STILL feel like crap.  The Voodoo Medicine (IVIg) Dr. She Who Will Not Be Named ran vigorously into my arms over the weekend and early week seems to have made me sick.  I have (on top of previous symptoms, i.e., vertigo, nausea, left leg weakness, etc.) developed a splitting headache with neck pain and a fever!  Who KNEW life could become soooo "grand"?

     Yes, dear Cheese readers, I do believe Armageddon is here...and it's called SEATTLE...

Excerpts From Hospital Journal Written On Paper Towels...

DAY #5:

     The view of Puget Sound from my 10th story window is hazy with muted sunshine.  Still, enough sun to cast shadows on the street far below me.  I have watched tug boats pull and push several barges into port, like tiny spiders skimming the water surface, quickly moving to and fro.

     I can see a clear view of my office building from this window, but I try not to stare at it too long...THAT view only raises more uncertainty, doubt, and fear within me.  I prefer to gaze mindlessly across the water or watch the people down below moving about like ants mining an ant hill...everyone has a destination...a plan...somewhere to go.

     I'm anxiously awaiting my nurse, "Naz", to come in to hook me up to the final IV that is holding me hostage in this hospital.  The last bag of Voodoo medicine to drip into the one vein I have left to use in my arms.  My forearms are swollen, bruised, and on fire from repeated infusions and having to search for new veins to start IV's.  They tell me the phlebitis will clear up eventually, but I'm supposed to keep a hot pack on my arms at all times...obviously don't have one on right now or I wouldn't be able to write this.  LOL

     Dr. She Who Will Not Be Named and I are on shaky ground.  I'm still perturbed she came searching for me, called 911 last week, and had me dragged into the hospital under such circumstances.  I'm also thankful she did, which provides much fodder for conflicted thinking.  LOL  Sometime over the weekend, she brought me an orchid...sometime over the weekend I recall apologizing to her for "my bad" behavior.  Ours is a strange and unique relationship, but one I am certainly very fortunate to have in the world of medical craziness.

     She has been insistent I go to a Rehab Unit, which I adamantly (of course) refuse.  She has attempted to bully, pressure, and compromise me into submission, but I will not budge on this issue.

     It is difficult for me to articulate WHY I feel so strongly about this and I seem to only frustrate the good doctor when I try.  There remains within me a deep vein (the one left that hasn't been "poked") of denial about my health and my future prognosis...a denial that feels necessary to uphold in a feeble attempt to "trick" my mind and body into wellness again.  My denial gives me a source of strength that I might not otherwise have, lest my mind be allowed to wallow in depression.

     "REHAB UNIT" equals giving up to me in a bizarre equation only I seem to understand.  And I am not ready or willing to "give up" or "give in"...I am not ready to be labeled "disabled" or needing of such services.  I want to return to my work, my life, and my previous health, but without labels or transfers to a unit that will greet me at it's doors with a handicapped sticker.

     For now, I'm just going to watch the tug boats push and pull...surely there must be a lesson to be learned from their ambitions...

There's Always A Story BEHIND A Story...

     Rumors of my demise appear, at least at THIS time, to be false.  I am home now from what became a VERY long stay at Club Med (hospital to those of you "in the know").  Of course there is a "story" here to share, but unfortunately I am still feeling the effects of medications and MS, rendering me quite unable to type my fable.  LOL

     Suffice it to say, what happened to me was NOT a pretty picture, but I'm sure at some point I will find the humor in the "ugly" and be able to share with you my latest adventures during my 5 day ordeal at Club Med.  All I feel capable of typing right now are brief bullet points:

*Became delirious on my bathroom floor...managed to send a "questionable" email to Dr. She Who Will Not Be Named in wee hours of the morning.

*Dr. SWWNBN sent out the calvary, which included herself first, then the fire department.

*Spent what seemed like two days in the Club Med ER, then upstairs to a neuro unit, while Saint EB and DC ran interference for me with the "medical establishment".

*Was infused over the course of 5 days with something called IVIG (I think?!), poked, prodded, and tested.

*Had multiple friends call, stop by, send flowers and cards, and asked both Saint EB and Rojoo to "handle" BRAINCHEESE in my absence.

*Did battle with Dr. SWWNBN and secured my discharge late yesterday to return HOME WHERE I BELONG and avoided transfer to a rehab unit (I feel quite pleased with myself over this!).

     That's pretty much the gist of things...I'll write more when I can feel like my computer monitor is not spinning in front of my eyes!  And a special thanks to Suzy in Chicago for posting my whereabouts on her blog as well as those of you who posted comments or sent emails wondering about my absence...this too, shall pass, and I will be Baaaaaack!

     Until then (I mean when I'm fully "back"), I'll try to at least put something up here as often as I can that may or may not make sense...which will actually be NORMAL for "Cheese"!... 

What's going on

Hi to all readers of Brain Cheese.

I'm one of Linda's many friends. She calls me (affectionately, I hope) Rojoo. Linda wants me to let everyone know that she's been in the hospital so hasn't been able to post since Thursday. She says that she's fine and hopes to be home in a few days.

Writing on her blog feels like having the keys to her Maserati. I'll take this opportunity to share one of my favorite poems, by a great Northwest poet. I think this has some relevance to what's going on, and I'll assume that when he talks about "a man," he means everyone.

 

IN A DARK TIME<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

 

By 

Theodore Roethke

 

 

In a dark time, the eye begins to see,

I meet my shadow in the deepening shade;

I hear my echo in the echoing wood-

A lord of nature weeping to a tree.

I live between the heron and the wren,

Beasts of the hill and serpents of the den.

 

What's madness but nobility of soul

At odds with circumstance? The day’s on fire!

I know the purity of pure despair,

My shadow pinned against a sweating wall.

That place among the rocks – is it a cave,

Or winding path? The edge is what I have.

 

A steady storm of correspondences!

A night flowing with birds, a ragged moon,

And in broad day the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />midnight come again!

A man goes far to find out what he is-

Death of the self in a long, tearless night,

All natural shapes blazing unnatural light.

 

Dark, dark my light, and darker my desire.

My soul, like some heat-maddened summer fly,

Keeps blazing at the sill. Which I is I?

A fallen man, I climb out of my fear.

The mind enters itself, and God the mind,

And one is One, free in the tearing wind.

 

 

 

My Cornucopia Of Crap...

     Well, let's just see if AOHELL will allow THIS picture to upload!  For whatever reason (perhaps Homeland Security is "on" to me?) AOL Journals has been either not loading photos or punishing me for some transgression...they also keep resetting my counter off there to the left side...gotta love modern technology that doesn't really work.  Kinda mimicking the human experience, I'd say.

     I've been receiving some emails from several of you "Cheese" readers out there and decided I must comment formally en masse to all y'all (you's guys, for the East Coasters)...after all, YOU'VE taken the time to write me...it's the least I can do.  LOL

     As always, I am quite stunned there even exists a "reader" out there who takes the time to review my Cornucopia of Crap...as I like to personally refer to Brain Cheese!  What started out as a desperation move on my part to pass time while in a nasty relapse this past Spring, has turned into a "process" of sorts...one I have thoroughly enjoyed.  AND, writing "Cheese" has kept me out of the drug-infested alleys and on the straight and narrow path of Multiple Sclerosis...LOL.

     I have been so moved by the many of you who either leave comments or send emails...your stories are not only noteworthy, but often inspiring on levels difficult for me to explain in words (I know, that sounds "odd"...since I'm rather a word whore!).  You sometimes "push" me to see things in ways I might not otherwise had opportunity to see OR (and far worse) CHOSEN not to look at.  And, even more importantly, you remind me daily I am NOT ALONE...and definitely not alone with this disease.

     This thing called "Cyberspace" is a strange world...but then again, the REAL world isn't all that balanced either!  But in Cyberspace, there is so much more "free space" for interpretations to be made...we DO lose those important communication signals, such as voice intonation, facial expressions (I'm grimacing right now as I type!), and body language...the "stuff" true human experience is made of.  There's just something to be said for direct contact with another being.

     But what I have gathered in my communications via the Internet/Cyberspace from all of you is this:

     We are all searching for connection with one another.  We all NEED connection with one another.  Connection can come in many shapes, sizes, and formats.  We all long for a sense of "community".  WE ALL WANT TO FEEL UNDERSTOOD.

     SO, with that said...thank you for dropping by Brain Cheese when you can and thank you for "connecting" with not only myself, but with others who drop by here as well.  I will continue to write here as long as AOHELL does not ban me or my brain simply poops out on me (which either really IS a possibility these days!)...I will continue to try to "connect" with you, dear readers and friends, as long as time will allow...and...as long as you are still wanting to belly up to the table of my Cornucopia O' Crap!...

    

Hmmm...

     Where to begin?  I suppose breathing would be the best place to start...

     It's been a long day.  Oddly, still only 24 hours of time passing, but feeling much longer than usual.  Of course, having horrible insomnia really DOES lengthen the time it takes those grains of sand to fall in the hour glass! LOL

     I made it to my appointment with Dr. She Who Will Not Be Named and was even on time, in spite of my current mobility issues...thanks to a friend carrying me around town and making this transition just a bit easier.  I always have some concerns at Dr. SWWNBN office when the front staff don't even have to ask my name anymore...somehow this seems a bit "too" familiar at times.  LOL

     As usual, Dr. SWWNBN was on task, informative, and instructive.  We spent a good deal of time discussing treatment options, treatment failures, treatment goals...treatment, treatment, treatment.  Which seems kind of an oxymoronic idea for a disease there really is NO treatment for...only symptom management...but such is MS.

     My eyes glazed over as my second toad lid slid protectively in place when the good doctor began mentioning terms like, "walker" and "disability" and "physical therapy"...I instinctively just tuned her out...it's just what I do.  I'm not at a place to hear or incorporate such ideas into my life...I STILL do have one, after all...a life, that is.

     "We" don't know why my MS has kicked up her lovely heels and started punching holes in my brain this past year..."we" don't know what may or may not arrest or slow this process..."we" have no clue what my prognosis is..."we" DO know I'm still RRMS because I don't have enough said permanent holes (black holes) being left in open spaces to change my diagnosis at this time...but "we" also can't explain why Christmas has come early in my brain with a string of gadolinium lit spots that would put Chevy Chase's, "Christmas Vacation" home to shame (a movie reference, folks...I'm reaching here!).

     So...the PLAN.  I have to have a minimum 3 month "wash out" period from the Tysabri infusions (last one with the anaphylactoid response was November, so we're looking toward mid February, 2007) to be enrolled in the FTY720 (otherwise, and hence forth referred to as the "Star Wars R2D2" drug) drug study Dr. SWWNBN is managing/monitoring.  Pulse IV Solumedrol will be added monthly until enrollment in the new study begins.  It's a 50/50 shot I will get the drug as it is a double-blinded study.  I'll be monitored monthly and, if it appears there is continued worsening of my MS/lesions, I'll be "bumped" out of the study and placed on Novantrone and/or placed on a combination of Cellcept along with another disease modifying therapy such as an Interferon. 

     These are the choices I have available to me...these are the choices Dr. SWWNBN assures me SHE would choose if it were her life.  Gotta love the frankness of THAT approach!

     In the meantime, the vertigo remains, the insomnia makes sand of my eyelids, the fatigue makes me stupid,  and I am considering amputation of my left leg as I have grown tired of dragging it along with me everywhere I go...I HAVE another one, after all!?!  How many do I REALLY need???  I am also supposed to schedule physical therapy with someone the good doctor uses who specializes in treating PT MS patients...this should be "fun".  LOL 

     I am hoping at the very least (that is, if I get to CHOOSE a symptom to lessen or go away!) the vertigo lessens soon as I am a bit leary of growing dependent on Valium to control it...if only I were a rock star...I mean, look how well Stevie Nicks did on Vicodin and Whitney Houston on Cocaine?

     Off to practice my vocals just in case the Valium becomes too permanent...

Don't Want A Formula For Disaster...

     Since I can't sleep anyway these days, I've been sitting awake ruminating on my 15 minute, Stryker Brigade, death-strike, neurological appointment tomorrow (actually now "today")...you know the kind...15 minutes to ask and have answered questions for what feels like decisions to be made for the rest of your life?!?  Rather important questions needing some sophisticated responses from a doctor?

     I'm actually not worried about the "sophistication" of responses by Dr. She Who Will Not Be Named (although I DO worry sometimes about her off-beat sense of humor)...I know she'll have something to say...she ALWAYS does.  But I AM a bit concerned about my abilities right now to formulate appropriate questions AND to understand the responses.  My head is a blur and my concentration is shot...not my usual presentation for such an important appointment.

     I am with it enough to know to take a friend with me to be present for the "answer" portion of the test...I learned this valuable lesson year's ago.  Of course, interestingly enough, even TWO people in the same room hearing the SAME response often "interpret" information differently...but it IS helpful to have someone present I know.  Plus...I need to be schlepped up the hill to the doctor's office also, so said friend meets several purposes for me (thank you, said friend!).

     I know I need to focus some questions on WHY my MS might be so aggressive right now in my life...I know I'd like some answers about prognosis, although I doubt I'll get any...tis the ol' MS crap shoot we all face ultimately.

     I need to clarify what treatment options are available to me currently...there's been mention of Novantrone, pulse IV Solumedrol, drug study FTY720, Cellcept, and perhaps even little voodoo dolls with pins...but I may have made that last option up...I can't remember.  LOL

     I feel a need to have that "serious and frank" patient to doctor talk...the one Dr. SWWNBN and I actually AVOID most of the time because we just can't seem to control our own humor and sarcasm when in the same room together...but THIS time feels way too serious for me.  I'd like her to answer me honestly what SHE would recommend to her own family member who might be in my shoes...bullshit and "hope" aside...WWDSWWNBND?  (Ah, that would be abbreviations for, "What Would Dr. She Who Will Not Be Named Do?)...frankly, right now I'm not all that invested in WWJD...I personally think Jesus would ask a hell of a lot of questions, too! LOL

     Then there's the need to know potential side effects of recommended treatments, and alternatives if chosen treatment FAILS, too (as I seem to be the recent post child for MS treatment failures...I'm seriously NOT proud of this fact...really!).  I've got a LOT to cover in 15 minutes!!! LOL

     Ultimately, I'm very aware this appointment will change little in my life right now, except provide some information I may not have access to without Dr. SWWNBN input...but I'm hoping just hearing it directly from her mouth versus written in an email will help to establish some semblance of order in the chaos of my brain right now...there's a lot "lost" in the world of cyberspace. 

     The "good doctor" and I may joke a lot with each other and mostly communicate via email, but there really IS something to be said for being able to "see" beyond the medical mask of a physician and REALLY feel what they are conveying...concern or crap...it's best to make those kind of judgments in person...

     Wish me luck...

OK, I Bathed...Now Back Off!...

     Isn't it funny how the simplest of tasks seem so daunting when feeling ill/depressed/sorry for one's self?  Just the simple act of taking a shower seems to exhaust me these days...of course, you have to remember, my WORLD is spinning from vertigo when I'm in there, so...LOL.

     And to make matters worse, AOHELL Journals is acting up...I can't even post the cute picture I took of Meha staring at a squirrel out the window today.  All is not right in the world of cyberspace for some reason...Frankly, I'm not even sure if I get this written, the site will accept it.

     I'm still pretty lacking in focus, but I DO want to take just a moment to thank all of you who have so diligently been checking in on me via blog, emails, calls, and visits...you really CAN'T know how much that means to me...not unless I tell you, of course! LOL

     I am going in to see Dr. She Who Will Not Be Named again in the morning, so hopefully I might have at least something funny she has said to write about...for what my insurance pays her, you'd think she could entertain me at the very least.

     I know this is a short post, but like the title says...I bathed already, so back off!  It's just the best I can do...at least I don't have "stank" on me...(ah, like I did a few hours ago...:0)

Things I've Learned From Daytime TV...

     Being homebound for days on end has its perks...like being forced to watch daytime TV (you KNOW I"m totally kidding about this being a "perk", right?!?).

     Because I'm too cheap (some may even venture to say, "miserly") to purchase cable TV (so I could at least have 167 choices of crap to watch!), I have been saddled with staring at the three, main broadcasting stations my age-old rabbit ear antenna can attract in signals...you know the ones:  ABC = Already Broadcasting Crap; CBS = Clearly Broadcasting Crap; and NBC = Nicely Broadcasting Crap.

     What I have discovered in my exhaustive daytime TV research is, the ENTIRE day consists of Talk Shows and Soap Operas and it's rather difficult to tell when one show begins and the other ends!  And when the odd occurrence happens that an actual actor carries over to the next show, I'm REALLY confused.

     I've learned a lot from the Talk Shows...nothing I've retained, but I KNOW I've learned a lot!  I've heard various tales of movie stars sharing their own stupid, little stories about their children, or their next movie, or what it was like to work with so and so, as if somehow their real, daily lives are SOOO compellingly different than G.Q. Normal...I've watched actors, who I'm pretty certain have personal chefs prepare their "real" meals, pretend to cook on national TV.  I've seen their Hollywood homes decorated for Christmas...which also strikes me as funny because I had always thought everyone of importance in Hollywood was Jewish!  I've watched families argue, cry, resolve their lifetime problems and differences all within the scope of an hour (doncha wish THAT were real?!?) just from the help and caring of a TV Talk Show Host.  Truly amazing things are happening out there in the land of BoobTube filming that I have been missing out on!

     And, as far as the daytime Soap Operas go...these are the things I've learned.

1.  No one ever eats at home on a Soap Opera.  If they did, there would be no opportunity to get caught in their dinner affair, be shotat, or be seen plotting someone else's demise.

2.  Even the worst of accidents or diseases can be cured with the right doctor...AND, it can be done in one week or less.  Blindness can be reversed, breast cancer treatments completed and in remission, and gun shot victims breathing on their own in a manner of hours.  Funny how no one has MS though, on Soap Operas...just not enough drama in THAT disease I guess! LOL

3.  Everyone has slept with everyone else's spouse, sister, aunt, uncle, brother, and cousin and this is all OK...this fact of daytime Soap Operas should make any real life practicing inbreeders much more comfortable with their chosen lifestyles!

4.  Drinking alcohol is a must to demonstrate not only one's tolerance, but also a depth of their despair...oh yeah, and then to also be able to get your nerve up to go sleep with your step-mother's brother's wife!

5.  No one smokes on Soap Operas anymore...it's not PC...drink, have unprotected sex, but don't light up!  Ratings would surely go down...

6.  No one has a real job on a Soap Opera...they talk about it...they pretend to go to meetings...but no one ever "produces" anything from their job.  Yet still, they ALL have lots and lots of money.

7.  No one has to go to the toilet on a Soap Opera...I find this really odd as toileting DOES occur daily for everyone...even those with the healthiest and strongest of bladders.  You never even SEE a toilet on a Soap Opera...I wonder why this is? LOL

8.  There is always a very wealthy family who's power influences even the littlest of people in the strangest of ways...the wealthy try to steal babies from the poor, move them from their homes, etc.  The only problem I see with this issue is, even the POOR people on the Soap Opera have bigger houses than I do and more stuff!  And remember, they don't go to work either...

9.  All emotional traumas can be worked through in less than a week to make room for another trauma the following week...it's quick, it'sefficient, it's forgotten.  But being the humanitarian I am, I DO still find myself pondering just how so and so is REALLY doing the next week?  I worry about their potential for Soap Opera PTSD.

10.  And finally, (you were seriously hoping for no more than ten...I know) People DO come back from the dead!  It happens all the time...I never knew this until I began watching Daytime TV...there is still hope for all of us!

     I imagine right about now, one of you is dialing my office (yes, the Mental Health Authorities!) to get someone over here right away, but I assure you I remain as sane as ever.  It might be a better intervention for me to have my electricity shut off so the TV goes down in flames with it...just a thought...

 

Stir Crazy...

     I'm soooo there...stir crazy that is!  I've been essentially "house bound" now for days with my only brief reprieves coming from attending infusion appointments or Saint EB loading me up in the car for a meal/groceries and CW taking pity on me for a drive one evening...definitely NOT the lifestyle I am accustomed to.

     And to make matters worse, the steroids have my brain spinning circles around me, but without any rhyme or reason to my thinking...throw in some Valium to help control the vertigo, continued gait difficulties, and I believe I have now created the perfect storm!  I can't focus on the simplest task (believe me, even typing this is taking total concentration!)...can't watch TV (of course all that is on is college football on a Saturday...why IS that?!?), can't concentrate to write or create anything meaningful, can't read more than a paragraph without forgetting what I've read...I've got the STIR CRAZIES!!!

     My cat is driving me over an edge of reason as well...it seems she does better when "mother" is gone to work most of the day.  So far today, she has knocked yet another potted plant off a shelf, smashing the pot into tiny pieces, rolled in the dirt and tracked it all over, jumping at my cane and my legs making it a precarious transfer down the hallway if I want to go from room to room, and generally being a devil child!  I finally had to "crate" her for a brief time just to get her to settle down...do you suppose she has any idea how much danger she is in right now with my roid rage raising its ugly head?  I doubt it.

     And to make matters even worse...and yes, I DO blame you MS bloggers...no one is posting anything this weekend!  What's up with that??  I NEED something to read and I need it now!  So get busy...make something up if you have to, but it really IS your turn to entertain me right now!

     Must go restrain myself back to the chair with the belts and hoses to keep myself from running down the street naked...

The Low Down, Dirty Mess...

     I just returned home from day three of my SECOND round of THREE IV Solumedrol infusions for this most recent relapse.  I will admit, I do generally feel better when on the IV's, but too much of a good thing can kill ya, too!  LOL  And the "metal mouth" taste that gets left lingering from the steroids certainly hampers my ENJOYMENT of my ravenous, steroid-induced feeding frenzy.  But still, I gorge myself uncontrollably...

     So, the low down, dirty mess of my MS these days leaves me feeling not in the holiday spirit, that's for sure.  I still have the vertigo, leg problems, etc., but not to the same extent when not on the roids.  And, as we all know, there is just no predicting when I might return to "baseline" (whatever that is now) or IF I will return to previous functioning.

     I've been emailing with Dr. She Who Will Not Be Named and having to ask some difficult questions...some, of which, she has answers for...some she does not.  But this is what we DO know:

     I am not a Tysabri candidate any longer.  Because of my "anaphylactoid reaction", the drug company has swept me under the rug and will not provide it given the risk.  But as Dr. SWWNBN points out, it obviously was not working in the manner it should have as I continued on to relapse as well as produced even more enhancing lesions seen on MRI last week.  It would be silly to even consider paying for the high cost drug, too.  I'm sure my Tysabri failure is not what the MS community had hoped to hear...so many have been relying on this drug as the miracle med...they just don't work for everyone though, folks, and I'm the poster child for Tysabri failure now. LOL

     I have already tried both Copaxone and Avonex...the Interferons give me the "death rattles"...so even though the Avonex actually demonstrated some stabilization of my disease process, it costs me my functioning life to be on it with increasingly more unmanageable post shot symptoms, such as very high fevers, aches, longer and longer lasting flu-like symptoms, etc.  Because Betaserone and Rebif are both Interferons, it is highly likely I would simply develop the same unmanageable problem.  Novantrone lingers as a "last resort" on the horizon for me...but because of its life-time limit of dosing, I simply am NOT willing to use up this option at this time in my life.  Yes, it's a crap shoot, but one I'm willing to make right now.

     Dr. SWWNBN will be beginning an onsite trial study of a drug not yet on the market anywhere and not yet even named.  It's index is FTY720, but you KNOW if it's ever approved on the market, it's name will change to something sappy and distasteful like "Horizonhope" or something stupid! LOL  She thinks I would be a good candidate for this study...either that, or she's just trying to shut me up!  The problem with double-blinded studies is, one never knows if "one" is receiving the drug or not until a year or two later...this "one" has done the Rituxan study, so I'm quite familiar with the process.  But I am at least willing to consider becoming a human guinea pig again on the 50/50 chance I MIGHT get the drug.

     The other options she has mentioned is a drug called Cellcept, which is an immunomodulator or possibly monthly IV Solumedrol...not sure about these options as she just told me about them today.  And I do so "well" on steroids anyway! LOL 

     She assures me my diagnosis remains Relapsing and Remitting MS and has not changed to Progressive.  But she tells me I have "very active RRMS"...something she called "aggressive MS" earlier this year...different adjective, same problem, isn't going away.

     So this is the MS garbage of my life these days...I am certainly hoping my sense of humor returns soon...and if not humor, then at least witty SARCASM, because even I am tired of reading this crap on BrainCheese!

     Wishing you all a great weekend and to those of you now receiving the brunt of the storm that blew through the West Coast (sorry suckers) and now plagues the Midwest and East, stay warm, dry, and alive!  And if infusion nurse, Sandy, is reading this...thanks so much for all you do for me even in my bad moods...you're a keeper!

Nostalgia Of The "Snow Day"...

     As children, we lived for "snow days" in the winter.  Coming into maturity on the Plains of the harsh Nebraska landscape was certain to bring at least one or two days of severe, blizzard conditions...those days when even the most leathered of farmers would dare ONLY to venture out on their John Deere tractors to litter the pristine snowy icecap with morsels of food to shivering livestock.  The only other activity in my farm village of 400 people remained unseen, within the warm walls of homes heated with wood stoves, gas, and electrical units.

     But, as soon as the winds withdrew themselves to nothing more than a deep howl, slowly the children of the "snow days" would emerge from the warmth and safety of their confining, four-walled wombs, and begin to spill out into the snow-covered hills and dirt roads.  There was no school, after all, when a "snow day" was declared.

     Our Spring galoshes doubled as our winter snow boots--those brightly red, rubber shoes that slipped tightly over a pair of tennis shoes and had an elastic cord hook to tighten the opening half way up the ankle.  This design was supposed to decrease the amount of moisture or snow that might fall into the tops of the 1/2 knee high boot, but it was never quite successful...both shoes and socks would be thoroughly drenched after only hours outside in the "snow day".

     Mother would always warn to, "dress in layers"--something we found both cumbersome and trite.  Too many layers made for difficult heaving of ice-packed snow balls and, at the age of 10, there was no fear of frostbite or gangrenous toes...we were invincible on "snow days".

     Long johns, jeans, a heavy coat and hood, and over-stuffed mittens were all that was needed to make a "snow day" complete.  We'd venture outside into the elements in search of that perfect patch of moist snow for rolling compact ice to build snowmen and the occasional fortress castle for the inevitable snowball war with the neighbors.  Even in sub-zero weather, sweat would bead up on our brows as 2 or 3 of us would huff and puff, putting our "backs into it", to make the largest snowball ever known to man...in avillage, this was something newsworthy and a definite photo opportunity.

     My family lived on an unusual parcel of land, with a flat football-field-sized yard (which we called the "draw"), a heavily wooded area referred to as "The Forest", and a terraced field and garden area.  It was in the terraced part of the yard, we could often find snow blown drifts as high as 10 feet...the perfect medium for digging deep snow caves and tunnels. 

     After hours of digging and shoveling snow, eventually we could create our own, private, invitation only, igloo-type hideaway, large enough to fit 5 or 6 more adventurous friends.  No one ever gave thought to the possibility of being buried alive by collapse of our ice lined walls...mortality never surfaced on a "snow day".

     Eventually, as the winter sun made its quick retreat all too soon beyond the top of "The Forest", mother would call outside with a brisk warning it was time to, "Get in from the cold.  Supper is almost ready"...we would begrudgingly return to rest and thaw into the warm wombs of our homes...a home now smelling strongly of homemade soup and delights to warm our frozen bellies.

     Rubber boots dripping with melting ice, soaked tennis shoes and socks, and parka jackets would be piled haphazardly near the door as we raced in semi-dry long johns to discover sweatshirts and flannel pajama bottoms to cover the brightly reddened flesh of our arms and legs.  Feet would be placed gingerly over heating sources with just the right amount of distance from flame or radiator, as mother once again reminded us, "They'll hurt really bad if you warm 'em up too quickly."

     By the time all 10 toes and 10 fingers were successfully thawed, the overhead light in the kitchen illuminated the late afternoon winter darkness, displaying a table set for the Kings and Queens of the "snow day".  This meal would carry us over through a few hours of black and white television and on into a peaceful slumber of night...

     I cannot recall ever experiencing a bad "snow day"...and for that, I am eternally grateful.

Leaning Into It...

     Last night, in the midst of what felt like a very "dark" hour, the AOL "You've got mail" voice rang out from the other room (actually, it is the voice of Dr. Evil from an Austin Powers movie saying, "You've got frickin' mail"), alerting me someone/something/some spam had just made an effort to reach me...I had been trying to remain unreachable, unfortunately.  I was simply not in the mood to read, chatter, or face anything else life (OR AOL for that matter!) might have to throw at me.

     But being the ever "I can't leave things be" person that I am, I decided to check the email message, hoping perhaps for a quick delete from Overstock.com or some other spammy site.  What I received instead, was an email I spent the next hour or more reading and rereading.  It had come from my dearest friend, Rojoo...a beacon in the night, calling me inward.

     For the better part of that hour, I sat reading, crying, and contemplating his wisest of messages...something I'd give him full credit for, except I can only imagine the words were channeled from "god"...he is such a talented and insightful writer on his own, but THIS particular message even seemed somehow beyond his graces.

     I asked his permission to share the email on "Cheese", admittedly selfishly at first...then I asked if he would somehow "rewrite" a version of the email for everyone's benefit.  Instead, he has given me permission to simply post the email "as is", for which I am indebted.  Any specific identifiers will be changed, however...especially if they were to reveal too much intimate data...such as my weight, or...LOL

     Here it is:

Dear Linda, 

 

     I've been pondering your fear message on the blog and wanted to respond personally. Even though I don't have MS, I feel a strong connection with what you describe. After my dad's death when I was 17, following close upon my uncle's and grandmother's deaths, I have always felt a strong sense of how tentative our daily lives are. I know that one aspect of the fear you describe is the fear of losing control, having to rely on others for care. I am grateful that I am not yet there. And yet another aspect is what each of us has to face: death, the end, the big sleep. The odd thing about death is that we go along pretending that it isn't going to happen when it most definitely is. I admire your truth-telling so much because you're describing the ultimate condition of being human, facing our own destruction, something that most of us spend great amounts of energy trying to avoid.

      Shit, this is hard to get at but what I want to say is that you can't go wrong. Whether you fight or whether you give up, whether you have a good attitude or a bad attitude, whether you place your hopes on medical breakthroughs or give up on the whole pseudo-science mess, you are equally lost and equally found. What I believe, which may not be helpful to you, is that in facing the worst, we find the best. The greatest advice I ever had from a therapist was when I asked him about what to do with all the pain I was feeling and he replied, "Lean into it." That's all we can do and yet it's what I try to avoid doing all the time. Whether or not there's an answer or a God or a way out, all we can do is lean into whatever it is that presents itself. I'm proud of you for doing exactly that and want you to know that I want to help, even if it's inconvenient for me.  

       You are the best.

        R~~