Grandma Goldie's Holiday Snack Mix...

     Ah, yeah...that would be Grandma Goldie in the picture over there...circa 1985.  What I'd give to have that polyester polka dot blouse she's wearing.  I'm sure she probably sewed that outfit herself as it is so Grandma Goldie-ish!!!

     Unfortunately today, I found myself initially cursing Gram under my breath...SHE'S the one who started this tradition of baking up vats of her secret recipe snack mix every holiday.  And she's also the one who taught me to GIVE generously...I DO blame her for my current yearly dilemma...the making of 50 bags of her snack mix to hand out to my coworkers each winter!

     I thought this year, mid relapse, I might be pardoned from this task...but oddly, even in my "gimpiness", my coworkers have still inquired about their missing bags of mix...I had no idea their very winter sustenance relied so heavily on receiving this treat!  None of them appear anywhere NEAR starvation, yet several have asked me, "So, are you making Grandma Goldie's snack mix this year?"  What else could I do, but continue tradition?

     So, Saint EB schlepped me off to the store today to buy the well over $150.00 of items needed to mix up and bake SIX, large roaster pans full of my secret white trash recipe mix.  I spent the rest of the day and evening mixing, stirring, and baking while watching the SEAHAWKS narrowly win their first NFL playoff game.  I am now utterly exhausted.

     I found myself premix status staring at the boxes of cereal and assorted items stacked on my counter top and wondering how I would ever find the energy needed to finish the project...let alone the "balance" to stand in my kitchen for any period of time.  I was a bit grumpy about the whole ordeal, quite frankly!

     Then, I thought to myself, "What would GG do?"  I smiled at the obvious answer that popped in my head...GG would JOYFULLY spend the entire day mixing, stirring and baking because Gram found great pleasure in doing things for others...she'd be "happy" about the project.

     As I sit now and stare at the 50 bags of snack mix neatly tucked in grocery bags for hauling, I can't say I necessarily feel "happy" about my project...but I DO have quite a sense of accomplishment having COMPLETED the task.  And I'm sure the "joyful" part will come when I am able to surprise my friends at work with their personal bags of treats...treats I'm fairly certain they thought would not come this year because of my MS.

     I DARE MS to mess with Grandma Goldie's tradition!!!...

This One Is ALL PEEJ's Fault!...

     So, I'm sitting IMing (can that even be used as a verb??) my buddy PEEJ in Boston tonight and she is accusing me of "allegedly" asking hard questions here on "Cheese"...she was referencing Thursday's post about "How Big Is Your Character?"  Apparently this post caused some brain strain for ol' PJ.  LOL

     And, in the course of a bit of computer laughter and discussing whether or not our MS CAN define us as people, my brain once again began to randomly wander off track a bit (as I'm so prone to do!).  Somehow in this IM conversation, I started thinking about the clients I work with, otherwise known as "The Mentally Ill".  The rusty cogs in my brain began grinding together as I started comparing how their diagnoses often "define" their characters...I also started thinking about how often in the mental health profession the PROFESSIONALS begin defining a client based on their diagnosis!

     This led me to yet another tangent (as so often my mind does)...I started recalling when I used to train new staff in psychiatric hospitals year's ago and one of the training tools I used to provide to make a point.  Now, mind you, most "new" staff who are hired in psychiatric hospitals are barely wet behind their ears and fresh out of college (if they've made it that far)...let's face it...the burn out rate and age for inpatient psychiatry is about 25-30 years old.  After that age of working in the "bin", you have either figured out what your own problems are that LED you to working in psychiatry or you have become a PATIENT!  Or, like some of us, you become referred to as "management".  LOL

     Anyway, I digress (again, typical)...I used to do a presentation on psychiatric diagnosis and symptoms of diagnoses.  Riveting crap, I'm sure...but, to make my initial point, I would bring in two canned food items.  One would be a lovely can with a label of fruit cocktail and the other would be the most grotesque label of spinach I could find on the market.  I would set these two cans out in front of my unfortunate captive audience and ask them to pick which of the cans they would be willing to eat right now?  Oh, yes...I came with spoons and forks too!

     There would, no doubt, always be many questions about "why" I was asking this or was this request covered under their new health insurance, etc.  But I would only respond with requesting they choose which can was most appealing to them and which they would be willing to eat RIGHT NOW.  Inevitably, one poor suckered, over-achiever, too quick to please would volunteer to choose a can and eat it.  I would quietly hand them the spoon and fork and the can opener.

     Once the lid was successfully removed, the unknowing "specimen"/employee would grimace and look at me with absolute horror (or hatred...it was really hard to interpret) and I (with a smirk) would ask them what was the matter?

     This trick worked EVERY time I presented this class...my newfound employee would ALWAYS choose the can with the fruit cocktail label and probably thought they were getting a free snack.  What they DIDN'T know is, I had previously switched the labels...the can that was opened was the gross and slimy spinach and the new employee believed they would HAVE to eat the can to save face!

     I never made them eat the contents...instead, we would engage in a "table" discussion about labels, how labels are used (i.e., diagnoses), how they are misused, how we prejudge the contents of a person based on their "label", AND how sometimes labels (diagnoses) can be wrong as well as HURTFUL and HARMFUL...or at the very least, NOT Palatable!!!

     So what's my friggin' point?  (Even I have almost forgotten THAT!)  Well...my point is once again, when we define ourselves by our "labels", or dare I say our MS diagnosis, we become what our label says is in our "can".  The MS label can be as slimy as grotesque spinach if we let it be...it can also be PREJUDGED by others to be grotesque spinach, when in fact, what's inside of us is lovely fruit cocktail...we have just been "mislabeled" by our friends/family/coworkers, etc.

     For me, I am working toward my MS NOT being necessarily what is in my can OR the label I choose to display to the world...I don't want it to define my contents as it has seemingly been doing this past year.  I want to know and feel what I have inside is that lovely fruit cocktail, even if my "label" may say something different to the world. 

     I'd like to be able to surprise that risk-taker who chooses to look inside me for my contents...who chooses to look beyond my label and really get to know what's inside me.  My MS is a part of me, but it is NOT my contents.

     Now, go treat yourself to a snack or something...I'm finished here...LOL

 

How Big Is Your Character?...

     I ended my Boobtube watching last night with one of the THREE shows on primetime TV that I actually choose to watch (Grey's Anatomy, Numbers, and Criminal Minds).  If you've ever caught an episode of "Criminal Minds", and of course are interested in deviant behavior and law (that's kind of a prerequisite!), this is the show for you.  It's based on the actual FBI Behavioral Analysis Unit that exists in the United States...the characters and story lines in the SHOW are not real, but the FBI BAU really DOES exist.

     I "brush up against" a bit of forensics work in my job (usually in the form of reading reports from the State Hospital), but hopefully the patients I see have never committed heinous crimes...fortunately, it is not the CRIMES portrayed on the show that fascinate me, but the BEHAVIORAL dynamics and investigation that keep me "hooked" on this show...that, and the wonderful quotes that come at the beginning and ending of the show in the form of narration.

     Last night's ending quote was one from Kahlil Gibran, a Lebanese-born poet from the late 1800's/early 1900's.  The quote really got me thinking about my own life and "character" for some reason...it was as follows:

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."

     It certainly doesn't take "genius" intelligence to get the gist of what Kahlil was trying to say here...Big characters come with some history/scars...it is these experiences that "grow" our characters.  But hang on to follow my rambling twist on this...

     So, as I'm laying awake in bed last night, unable to sleep, this quote kept rolling over and over in the waves of my pre-slumber mind.  Strong souls...massive characters...scars...

     We've ALL had them...scars to our psyche, that is.  We have all "endured" something along our path in life, whether we've been diagnosed with MS or some other disease...whether we've endured physical, emotional, or spiritual trauma.  It is these very experiences that have molded us into who we are today...whether our characters be "massive" or not.

     Now, add to the equation of pre-sleep thought a commercial that's running right now with one of the Redgrave girls talking about how she'd like to die from too much laughter, or from dancing, or from...but she REFUSES to die from breast cancer.  Massive characters and dying began twirling through the holes in my MS brain!  I began melding together thoughts about MY character and dying...and just HOW I would want to be remembered (Hold on!  This is not morose...bear with me!) in life and death.

     We often hear those sappy quotes about how "I have MS, but it doesn't have me", or "My MS doesn't define me"...I have always brushed them off as trite and too simplistic for my "genius" intelligence.  LOL  But in review of my bedtime thoughts last night, I came to the conclusion my MS DOES have me and it HAS BEEN defining me.  And, more importantly...THIS IS NOT WHAT I WANT TO BE REMEMBERED FOR IN THIS LIFE...character-building or not!  Whew!...You thought I'd never get to the point, didn't you?!?  LOL

     It IS true...Multiple Sclerosis has been a "massive" character builder for me (whether I now have massive character remains to be seen)...and with two or more relapses a year, it has been consuming my everyday activities and life...it has been the basis of much of my daily focus.  It has been in front and center in my every step, every fear, every thought of my future.  "It" has been consuming me...and hopefully building more character along the way.

     But in thinking of my life pre-MS and now, I began to wonder what OTHERS are seeing in my character?  I began wondering just how I might be eulogized in death...what I would be remembered for?  And then, it hit me like a lead balloon...I DO NOT WANT TO BE REMEMBERED AS THE WOMAN WHO HAD MS!!! 

**THUD**

     I want to be remembered as someone who worked hard,who loved "big", who enjoyed the simple things, who laughed loudly, and someone who found the humor in all things in life...I want to be remembered as someone who gave from their heart, who was welcoming, who danced to music anytime/anywhere...someone who made you laugh, who held your hand when you cried, who comforted the sick and suffering.  NOT SOMEONE WHO "SUFFERED" FROM MULTIPLE SCLEROSIS.

     So, as much as it "pains" me to repeat this or say this..."I have MS, but it doesn't have me"...this is my new mantra for 2007.  Banal or not...it is how I MUST begin again to live my life if I want to be remembered for the other things above.

     How big is YOUR character?  What do YOU want to be remembered for?  Yes, this IS an interactive post...please leave your comments below...

Synchronistic, Creepy, Or Just Plain Coincidence?...

     Two posts in one day?  What will I think of next...

     I was listening to Entertainment Tonight on the Boobtube just a bit ago (because this is what my life has come to) and I heard some startling news...I'll share that in a moment.

     But first, I have to tell you about this funny/bizzaro email conversation I had late last week with Dr. She Who Will Not Be Named.  I had been in frantic "rant" email mode with her as we tried to satisfy my employer's demands for my return to work...needless to say, I DID type many an expletive!  And I think I may have even engaged in a bit of name calling...I don't think Dr. SWWNBN had ever "read" me so frustrated and angry before.

     Anywhozit...late in the afternoon on Thursday, "we" had finally settled the work issue and I was scheduled to return on Friday.  I sent Dr. SWWNBN confirmation of this via email and she responded with one line, "I'm just glad you didn't blow your aneurysm....."  She was trying to be "cute"...I don't HAVE an aneurysm!

     The actual funny part of that response (if one could ever imagine an aneurysm being "funny") came from me by replying, "My mother DIED from an aneurysm.  Now don't you feel like a schmuck?"  Several apologies followed from Dr. SWWNBN and my attempts to make her feel badly succeeded...AND my mother really DID die from a brain aneurysm...that's no joke.  But in the game of One Upsmanship, you have to use what material is available...I'm shameless.

     So, I secretly laughed/gloated over my triumphant reply and "putting her in her place" with Dr. SWWNBN, but it oddly got me thinking quite a bit about my mother's death.  This February with be the 10th anniversary of that tragic event...my mother being fine one moment, then dying in my arms the next.

     I have often quietly worried about MY brain with MS and if the "aneurysm effect" might be something hereditary.  Although I'm pretty certain my mother did not have Multiple Sclerosis, she obviously DID have something wrong in her brain...everyone from psychiatry to neurology has assured me there is ABSOLUTELY NO CONNECTION BETWEEN THE TWO.

     Now, travel with me in my time machine back to this evening and Entertainment Tonight!  I am laying mindlessly on my couch obsessing over what the possible outcomes might be from my CT scan today (because it's just what I do...obsess) and I hear a report about Terri Garr (you know, the actress poster child for MS?) recuperating from a brain aneurysm and surgery which occurred on December 21st!!!  Here's a link if you think I'm joking... Teri Garr Recovering from Brain Aneurysm | Teri Garr : People.com .

     I've decided my thoughts are getting creepy and I need to stop thinking so much...

I Don't Know Why I Laugh So Hard...

     I'm sure this is one of those "You had to be there" stories I'm about to share...but it made me laugh so hard this morning I nearly wet myself (key word is "nearly", folks!).

     My bestest friend, who I'll call "Patsy", called me up today from the frigid cold of North Dakota to check in and see how things were/are going for me.  We've been friends for nearly 20 years, so there's little we can't and don't say to each other...as all good friends should.

     Patsy has a biracial child in a tiny farm town in North Dakota AND she's a single parent...that alone should be cause for nominations of "Mother of the Year" in my book!  And in spite of the population of her town being ALL Caucasian except one, both she and her little girl handle the disparity quite well.  And somewhat remarkably, her family and her home town have seemed to embrace them with color-blindness...something we all wish there could be more of in the rest of the world.

     Anyway, today's topic of discussion centered around young "T" possibly needing braces.  Unfortunately, "T" has a somewhat noticeable gap between her two, front teeth...nothing I would ever make a big deal out of because she's a beautiful child all the same.  But Patsy skimps on nothing when it comes to the welfare of her child, so the thought of dropping SIX GRAND on a pair of wires for "T's" mouth was not really the issue. 

     The phone conversation today went something like this:

Patsy:  "So, we're gonna drive 2 hours tomorrow for the orthodontist consult and hopefully he'll have some recommendations, but I imagine he's gonna recommend the big bucks."

ME:  "Uhuh."  **Sipping pop**

Patsy:  "And if he thinks braces will close that gap, then that's what she'll get."

ME:  "Hmmm..."

Patsy:  "I mean, for God's sake, I certainly don't want her growing up to look like Condi Rice!  That woman earns a six figure salary and SHE can't pay to get those teeth fixed???"

ME:  **Spitting pop out of my mouth and blowing it from my nose**  "What!?"

Patsy:  "Condi Rice.  You know.  She's the Secretary of State?  Big gaping gap between her teeth and she can AFFORD to get that fixed."

ME:  **Wiping spewed beverage on my sleeve**  Oh my God!  Did you just say what I thought you said?"  **Laughing uncontrollably now**

Patsy:  "Yep, I did.  I don't want my child growing up to look like Condi Rice."

     Yes, I guess you REALLY did need to be there...

Can You Hear Me Now?...

     Busy day today...saw the ENT doctor after arranging rides and bus schedules to get way across town.  I really HATE this not driving thing.  And, on top of that, I awoke with a bad dizziness again today...not the kind of thing I really want to experience while enduring the wind and rain of Seattle at a bus stop!

     Dr. Huh? turned out to be quite likeable...I name him this because he's an otolaryngologist...ear, nose and throat...but mostly I saw him for my ears!  He pounded around on my head, peeked into my ears and throat, took a somewhat surprising culture from my nose (they really should tell you when they're going to jam something in there!), and scheduled me for more tests.

     Dr. Huh? thinks I may either have sinusitis or mastoiditis...neither sounds great, but if one will explain my dizziness/vertigo, then I'll take it...as long as it's treatable, that is.  He laughed heartily when I told him my tale of woes and how Dr. She Who Will Not Be Named has tried to kill me...twice!  He commented that I am a "complicated" patient...I don't necessarily think he meant this as a "good" thing.

     So, tomorrow I go first to be tortured by Madam Z in physical therapy and then I'm off to get a CT scan of my sinuses and mastoid bones (bones behind the ear in the skull)...yet another filled and "productive" day.  Since I don't return to work until Thursday, I will have the entire day to run the streets (or limp them) and try to recuperate from my fatigue of returning to work this past weekend. 

     And on Friday, I will have a hearing test run in the morning...just to make sure when I'm ignoring someone, it's really by choice!

     Gotta go lay back down again...the computer monitor seems to be spinning a bit...or maybe I am...

    

    

The Beginning 2007 Report...Because I KNOW You Care!...

     So...I took a deep breath and lept (or limped) into 2007 today.  It's funny how day ONE of 2007 really didn't seem all that different than 2006...I guess it's all just a matter of perspective.  Well, that and now retraining myself to put "07" on every document and detail of my life!

     I ran the usual new year diagnostic report on the ol' bod today because my "check engine" light has been flashing at me for quite some time...I tend to ignore this in my car unfortunately also.  After all, the light just says to CHECK the engine...it doesn't command me to DO anything about it!

     So, body/mind/soul scan went something like this:

     I'm still having bouts of vertigo/dizziness when looking to the right or up above my head, albeit improved from two weeks ago.  I DO wish this would remit or relent any day now...it has worn out its welcome.

     Nausea...it's much improved...as long as I don't look up or to the right!  Or ride in elevators or cars or anything that has too much motion...but other than that, it's been pretty manageable.

     I just finished a 10 day course of antibiotics for my FUO (fever of unknown origin)...fever has remained in the afternoons and evenings in spite of my best intentions.  Interestingly enough however, TONIGHT was the first evening I have NOT run a fever in well over 2-3 weeks!  I assume this may be a "white coat" response as I am scheduled to see the Ear/Nose/Throat specialist tomorrow that Dr. She Who Will Not Be Named has insisted I go see...you know how we ALL seem to get better moments before we go in to see the doctor?!?  Whatever...I have just been elated to NOT have the worsening of afternoon/evening symptoms today that seem to accompany the fever!

     Left leg...still my nemesis.  I try to treat it with "kindness", but it doesn't seem to want to compromise with MY needs...like walking, etc.  I continue to have what my physical therapist has called, "sensory issues" in my foot and ankle, causing an "interesting" gait issue.  I like to refer to it as my "drunken sailor" walk...every few steps my brain FORGETS to tell my foot to pick up, causing a drag or stumble move...it's really quite charming!  If you're one of Jerry's kids, that is.  Add on the sensation I have of feeling like I might have a "charlie horse" cramp at any moment (and sometimes do) and my "nemesis" becomes center stage.

     Fatigue...well, I suppose I shouldn't complain about this one now, should I?!?  After all, Dr. SWWNBN and nearly everyone else in my life has told me to "take it easy", "go back into work slowly", blahty blahty blah...maybe while I'm at the ENT doctor tomorrow he can figure out why I have so much trouble LISTENING!  Suffice it to say, I'm pretty much dog-assed tired right now...but the good news is, I am SO exhausted by the time I have gone to bed, I AM sleeping like a comatose patient (always trying to see the silver lining!).

     Left-sided occipital/neck/shoulder pain...well, it's still there and hasn't changed much.  It hasn't seemed as bad tonight without the fever, however.  I just wish I didn't have it as it really is a PAIN IN THE NECK!

     Bilateral phlebitis...hmmm.  Still have it in my arms, although not as painful.  I cannot for the life of me figure out why THIS is lasting so long, but I assume it will go away on its own...eventually...some day...soon.

     My immune system as a whole...I can only assume it's completely out of wack, what with all the Tysabri, steroids, drugs, IVIg, antibiotics, etc.  Time will certainly tell on this issue as well.  I'm not really at all certain what the "game plan" is for any future treatment for me...I was a bit out of it when all this was discussed and "cussed" while I was in the hospital.  The last "plan" I recall was to do monthly IV steroids while my system "washes out" the Tysabri for 3 months...then, I was to enter the "R2D2" drug study (FTY720?...I've forgotten the drug call numbers already!!!).  But there WAS that talk of Novantrone while I was in the hospital...I think I may have even talked with another of Dr. SWWNBN patients via phone while there (I'm sure if I DID, it was something SHE set up and NOT me randomly dialing!).  My past month of life just feels a blur...I will see the good doctor next week to discuss what's on the table.

     My mind...my "mood" is definitely improved having gone back to work and prying my arse off the sofa!  Having somewhere to go has certainly lifted my spirits...which, I don't know about you, but for me this is a BIG part of the MS battle!  As long as I "think" I can, I can.

     My spirit...it's been a bit battered these past 6-8 weeks.  Fortunately, not unlike a Timex watch, it can "take a licking and keep on ticking"...it is, after all, the ONE part of my being already preprogrammed to run as it should, IN SPITE of my mind/body interference!

     So, there's the beginning 2007 report card as I know it to be in this moment.  I'm sure you've all been anxiously awaiting to hear this...LOL.  I document it here (as I say in jest) because this is the place I DO document my every hiccup...and, maybe somehow the information will be useful to someone else wondering about their own symptoms or concerns.  I recall how important it was for me to FINALLY find another MSer who experienced pain as their primary symptom...it made me feel like I was a part of the "club" and gave me some confirmation I was NOT alone.  Pretty unfortunate way to bond, however...