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~~

 

A Living Will...by Naomi Halperin Spigle

 

 

 

 

 

 

 

 

 

 

When they say I cannot

hear you, sing me lullabies

and folk songs, the ones

I sang to you.  I will hear them

as an unborn child can hear

its mother's music through

the waters of the womb.

 

When they say I can feel

nothing, press your face

against my forehead, rest your

hand against my cheek.  I

will feel them as the woman

at the window feels the wind

outside the glass.

 

When they say I'm past

all caring, brush my hair

and braid in ribbons.  I will

know it as the seashells

on my table know the

rhythms of the sea.

 

When they tell you

to go home, stay with me

if you can.  Deep

inside I will be

weeping.

It's Time To Tell The Truth...Mine...

     I am having to lie flat and pen this post on paper to eventually transcribe it to "Cheese"...I hope I can read my handwriting later when I try to type it! LOL

     I awoke this morning feeling far ill and ill at ease than I have felt in quite some time.  Yes, it is true...I have mega doses of corticosteroids pulsing through my body at levels that should kill a small herd of elephants..this causative factor alone contributes heavily to my over all sense of "dis" ease.  There does remain a small, snippet of logic in this MS brain of mine, however!  But even knowledge and understanding does not alter the "feeling" of mental discomfort my mind has taken residence in.

     Most often on this blog, it has been my goal to educate and to entertain...and just once in a while, if the stars align properly, to tackle those "unseemly", those "uncomfortable", those "hidden" things about Multiple Sclerosis we ALL know exist, but choose to sometimes ignore. 

     Today, I feel I can no longer ignore the very serious side of MS--fear and loathing.  And what better way to open up this topic than by sharing some of my own, deeply harbored (and some may say secretive) thoughts.

     Thus, my "truth" as it is known to me.  Certainly not my ENTIRE truth, but a piece of my truth that, like dirty underwear, is often kept tucked away out of sight for fear what other's might think of me...embarrassment and perhaps guilt of being seen as vulnerable or weak.

     This has been an incredibly difficult and emotional MS year for me...that, most of you could have read between the lines of "Cheese".  You are all quite bright and intuitive and, unfortunately share the same disease as I...we with MS DO recognize each other...like it or not.

     I have touched on occasion (perhaps more often than you cared to read actually!) of the fact my MS has become "aggressive" this year...there's nothing particularly profound in this statement or realization...weALL progress in our disease at one point or another.

     What HAS come as a shock to me however, is the overwhelming dissonance I feel with this reality...a reality that strikes at the core of my existence and very being.  A reality offering glimpses of mortality, destruction, and probable disillusionment...I am not, nor will I ever be again, the physical and emotional being I once was.  And I am saddened, angered, and frightened by this.

     It IS true...simple aging and maturity also create this same scenario on one level or another.  But with MS, there is an extra "push" not already pre-programmed in the body and mind.  With MS, denial is much more difficult to maintain because of MS's relentless unpredictability...this unpredictability is what I call "The True Face Of MS" (sorry National MS Society slogan people...your ads are nice, but not too real!).

     I, like you, struggle to maintain some semblance of balance in my life while living with MS.  That "balance" is often precarious footing and the uncertainty of the disease frequently throws me into fear.

     I have many fears...some quite obvious...some quite unconscious.  Of course, the "BIG THREE", as I like to call them are:  1.  Disability,  2.  Self-support, and 3.  Loss.  As you can imagine, there are no clear-cut boundaries between these fears and they often selfishly overlap upon one another.

     Today, in particular, all THREE are smacking me around in what feels unfair battle.  I awakened with an increase in symptoms, which was both surprising and unpredictable, given I really felt I was "on the mend" after a restful weekend.  My hands are tremoring somewhat coarsely, which is new.  My vertigo/nausea persists as though it has found a new lifetime home, and my left leg is feeling useless.  But the worst (if one must pick) disability factor of my day today is my speech.  It is slurred and difficult for ME to even understand...very new and most alarming.  I cannot work with slurred speech.

     As you might imagine, my fear has stopped me dead in my limping gait tracks today.  Disability, self-support, and loss are staring back at me in my foggy mirror and I do NOT like their reflection.  I am afraid.  I do not want to look at these three visitors...I want them to leave me be so that I may rest and recuperate.  Yet, they remain, bringing with them only uncertainty and anxiety that even the strongest mind-altering medication cannot erase.

     It is here in this place, which I believe may be to the right and two doors down from hell, that I find myself today...immobilized.  I find myself "stuck"...unable to move, to breathe, to "do", to grieve, to become angry, to cry, to laugh...to do anything other than put pen to paper in an effort to describe this "place" I have been cast into.

     It is not my intent to depress anyone today.  After all, I have no influence over your choices of emotions or what you read...and I'm quite certain if you tried hard enough, you could find your own means of "depression".  LOL  It is simply my goal to find that similar and common ground we feel with this disease...to call a "spade a spade", so to speak.  To relate to you across the miles as much meaning as possible...to connect even in discomfort.

     I offer no quick "fixes", no cures, no drug remedies, and certainly no advice how to AVOID this place of feeling.  Instead, I offer a rare and inner glimpse into my own true thoughts and feelings...the ones I generally censor from "Cheese"...the ones we ALL know exist, but cannot remain in for long periods of time to spare ourselves consumption.

     The feeling of fear...  

Let It Snow, Let It Snow...I Think NOT!...

     It looks as though my life will now be consumed by weather reports as these are the ONLY things now running on TV in Seattle!  Yep, it's snowing here...unusual, cold, wet, snow.  Just in case you don't believe me, scroll through the two pictures above...I actually WROTE "Seattle" in the snow just to prove it!

     I have unthinkable cabin fever, which is only exacerbated by Prednisone "crazies"...if I had any energy at all, I'd certainly try to put some of this frenetic agitation into something "productive"...but alas, I don't.  LOL

     I have now had two days off from work with a plan to return back to the grind tomorrow afternoon...I guess I'll just have to play this by ear (too bad I'm most likely tone deaf, however!).  My vertigo persists, but the nausea is controlled for the most part.  It's hard to determine which part of my nausea is from the steroids and which part is from the vertigo...guess it's all relevant and probably doesn't matter.  LOL  It just "is".

     My left leg continues to give me fits of weakness, tremor, and a generalized "disuse" syndrome...thus, my need to stay off the icy streets and sidewalks and remain on homebound status. 

     Meha (kitten) is driving me crazy (but not a far push for her to make really) as the activity of the storm seems to have given her a breath of new life.  She is busy this moment trying to eat a beloved plant...I've just decided to give it up to the "ghost" as I don't have it in me to chase her away right now!

      So, as you can see, I have ABSOLUTELY NOTHING TO TALK ABOUT...I think I'll retire back to my "lounge" and see what fresh hell is now playing on the boob tube.  What a life, eh?...

It's Colder Than A Well Digger's Arse Out Here...

     Where DO we come up with these sayings?  All I know is, I grew up hearing how the temperatures outside could readily be compared to the lack of "bun" heat of a well digger...unfortunately, I don't believe I've ever even KNOWN a well digger to discuss lack of thermal control in the hiny area, so this may be a moot point!

     But WHATEVER!  It really is becoming quite cold out here in Seattle and we are expecting the very unusual rain mixed with snow in the higher elevations...thus, making it FEEL "colder than a well digger's arse" outside!  I've been laying around in fleece because I'm far too cheap to run millions of revolutions on my electric meter to stay warm...I imagine it is probably a bit LESS chilly to me than the general public anyway as I am on day 3 of PREDNISONE ROID RAGE...steroids always heat up my core temperature and make me look alcoholic in the face with a crimson blush.  Frankly, I can't think of a better time to endure this side effect than right now!

     I am developing cabin fever...thoughts of "The Shining" (Jack Nicholas movie) and "REDRUM" are brewing in the back of my noggin...I'm still not able to drive (or at least SHOULDN'T drive) and quite clumsy with the cane and vertigo.  I've eaten nearly everything NOT nailed down in my kitchen, but I have tried to chew the nails out of the things that ARE secured!  And, as you can see by the timing of this post, it IS 3:00AM PST...much like the energizer bunny, I'm "still going".  This is even after some mega dosed psychiatric medications!

     I DO think I will have to retire to the sanctuary of my bedroom shortly, however...if for nothing else, but the heat!  Warm and inviting covers do sound like Mecca to me right now.  Maybe tomorrow I will maintain just a bit more focus and a bit less manic energy and actually have something to write about besides sayings from my childhood or the weather...please don't hold your breath though...LOL

It Nearly Killed Me, But I'm Still Here To Write About It...

     Work, that is.  I DID make it in to work on Thanksgiving Day, against the protests of Dr. She Who Will Not Be Named...she really should know better by now than to "protest" ANY of my professed desires...it only makes me STRONGER!  LOL

     My work hours, which actually ended up being LONGER than normal because of a high volume of over-stuffed and drunk Thanksgiving Day celebrants ending up in emergency rooms, was beyond grueling.  My work partners and I not only did NOT get to partake in any type of Thanksgiving meal or festivities, we actually ended up having no time to eat ANYTHING AT ALL!  Unless of course, you call a two day old bag of Cheetos, a can of pop, and some apple slices a meal OR a celebration...but, ah...the life of a public servant.

     My coworkers are always so wonderful to me, but even more so in times when I am ill...they simply allowed me to "pace" myself and helped out in any ways they could like driving, etc.  My vertigo remains constant, but the nausea is completely manageable with drugs right now...and my left leg...well, that's another story to be later determined.  It continues to tremor, be weak, and essentially be quite annoying for mobility...the cane helps, but it is also quite cumbersome.

     I grew extremely tired and weak (from lack of sustenance most likely!) toward the end of our last emergency room evaluation...I was tired, kranky, shaky, "roid raged", and simply not in the mood to encounter yet another human being.  However, just in the midst of my free fall into pure physical hell, the family members we had been working with came up to us to say "thank you" before leaving the ER and before we sent their loved one away to the safety of a hospital.

     I know this may not sound like such a big deal and one would probably think we are "thanked" many times in my job, but this is simply not the case.  Most often, someone is always mad at myself or my coworkers and unhappy with our assessments...either our clients or the professionals that refer them.

     But the genuine sincerity of this particular family touched my heart greatly...they truly WERE grateful for our work and care with their loved one.  They were THANKFUL on Thanksgiving Day and they went out of their way to make certain that message was received by us.

     So, two lessons learned here...ALWAYS say thank you when you mean it because you have no way of knowing just what an important impact that may have on someone else.  And number two...Thanksgiving really isn't about the food, it's about gratefulness!  I think I already knew these important lessons, but it never hurts to remind myself every now and then!...

Some Things To Be Thankful For...

     As I sat today moping in the muck of my MS, feeling sorry for myself, and yea, a tad bit angry, it came to mind that perhaps in this season of Thanksgiving it might me more "productive" to focus on a few items in my life I am grateful for.  Believe me, this was/is NOT an easy shift for me right now, as I would prefer to thoroughly drown myself in my self-created muck!

     But as I pondered this grand idea of "thankfulness", it became more of an innate reflexive desire to try to turn my lemons into lemonade...or at the very least, my "crap" into fertilizer!  To try and move myself from this place of self-made despair and really focus on what is REAL...what is felt and known to be good in my life.

     I initially set a goal (and a title for this blog, I might add!) of 20 things I am thankful for...I now know that's a bit of a lofty set up given my propensity toward the negative right now! LOL  But I WILL just begin my list and see where it takes me...20 or not.

     So, "THINGS I AM THANKFUL FOR":

1.  Just to get this negative thought out of the way in a twisted sense of gratitude, I am VERY THANKFUL I DO NOT HAVE RECTAL CANCER.  There...I said it...now I'll move on.

2.  Most importantly, I am grateful to have such wonderful friends like you who take the time to read my ramblings on "Cheese"...even though almost all of you, I have never met, I feel a special bond that crosses space and time and brings me close to those of you who feed my soul...what I call "friend".

3.  I am thankful I remain gainfully employed in a profession that, for the most part, I thoroughly enjoy and feel successful at.

4.  I am grateful I have enough of everything I could possibly need and almost anything I could ever want...a roof over my head, food in my cupboards, transportation, and all the comforts of "home".

5.  I am so blessed to have my local "family" of friends who watch over me, make me laugh, comfort me, care for me, and provide such intimate caring that even my own family of origin would have a hard time matching if they were still alive and/or even nearby.

6.  I am thankful to have a wonderful and wise mentor in my life right now who, not only feeds my spiritual nature, but also guides my path and walk beside me...thank you, QuintaE.

7.  I am grateful to live in a country where freedoms are still "free" and I do not have to fear daily bombings, or going to bed hungry, or becoming enslaved or persecuted.

8.  I am thankful to live in an area of the country where the air remains relatively clean, the scenery is still pristine and beautiful, and the spirit of the Northwest continues to hold it's ancient wisdoms.

9.  I am grateful I still have the wit about me to "choose", to "decide", and to "know", and that my mental capacities remain as clear as they can be, in spite of MS.

10.  I am thankful I have surrounded myself with what I believe to be the wisest and compassionate healthcare providers available to me and that they continue to honor and respect my wishes and see me as the person I am...not the disease.

11.  I am thankful (most of the time!) for this little ball of fur I call my kitten, who delights me when she is good and even when she is bad!  She offers me company and perspective in my life and something to remain responsible to.

12.  I am grateful to have somehow not only survived my childhood and early adult years, but also incorporated valuable lessons about love, trust, and compassion...the essence of what makes me who I am today.

13.  I am thankful I have many skills and continue to be able to share them with those around me...because the purpose of "having" something is found in the "giving" of it.

14.  I am blessed to have learned about justice and peace and universal law at an early age...learning I am still incorporating and practicing in an effort to hone in a more precise manner.

15.  I am thankful for creative writers who have inspired me over the years and offered me glimpses of understanding and insights outside of my usual world...things I would not otherwise be exposed to without their views and ideas.

16.  Did I mention already I'm thankful I don't have rectal cancer????

     OK...I made it to 15!  That's really not too shabby given my mood today.  I feel a bit more loose around the psyche belt gripping my being right now.  It's good to try to focus on something other than the negatives...I may however, have to return repeatedly to reading this post MYSELF over the course of the next few days!

     What are YOU thankful for?  Throw me a bone in the comment section and give me something else to ponder...

                      HAPPY THANKSGIVING ALL

Trying To Find My "Happy Place"...

     Not a "good" day...it started out with a way too early MRI at 7:15AM.  Barely got out of bed early enough to change out of my pajamas, let alone greet my guardian angel, EB, who graciously gave me a ride in the rain to my appointment.  Got shoved in the tube and came home with my copy of the films/disk for my own, personal voyeuristic pleasures (is it really voyeurism if you're looking at yourself?!?).  My returning cab driver from Ethiopia was nice, though...and his cab was clean.

     I took a peek at my noggin photos and noticed a few changes, but all in all, realized I DID still have some brain tissue left...so I emailed Dr. She Who Will Not Be Named to tell her "my findings"...unfortunately, what I believed I saw was NOT her assessment.  She reported I had two new enhancing lesions (I think I really did see this, but denial is a powerful tool for the mind) and the TYSABRI nazi's have refused me infusion rights now because of my "anaphylactoid reaction" last week.  Guess based on the MRI, the liquid gold may not really be working for me anyway.

     Sooo...Dr. SWWNBN is consulting with my previous neurologist on "what to do"...I'm running out of options and my disease continues to progress itself right through the center of my brain.  Here are her actual words, but I'm sure if she ever "discovered" I have been quoting her on "Cheese", I'll probably get sued!

You are a bad neurologist. You have two newly enhancing lesions not noted in 5/06. The Biogen folks said no infusion; I am actually talking your case over with your other neurologist to see if she has any brilliant ideas – she’s still cogitating so I feel better.  Happy to write you a note although I don’t think you should go to work Thursday. So maybe Friday, preferably Mon. Where shall I send it?

     The latter part of her message was in reference to my BEGGING for a note to return me to work on Thanksgiving Day as my coworkers will be working skeletal staffingand really would feel the impact of my absence...somehow, I STILL care about my job!  The sad statement of fact is, I'm really not even sure I CAN physically return to work in two days...I still have vertigo (although not as bad as Sunday) and my left leg is very weak and unstable.  But I feel I HAVE to have a goal right now...at least some kind of sense of control in my life since MS is stripping me of my dignity and trying to steal my joy.  LOL

     I had my second dose of IV Solumedrol today at 3:30PM...another good friend and neighbor carted me to and fro for that adventure as I can't drive right now.  Well, I "could" drive...but I haven't lost ALL of my brain tissue and discernment to know I'd probably kill someone if I tried to drive!  The infusion went fine, but I'm starting to feel the whirly psycho effects of the roids...you know, crying at AT&T commercials, slurred speech, wanting to eat not only the contents of my refrigerator but also the metal of the container itself, and agitation!

     So, as you can tell, I really AM on the cusp of normal and I'm desperately trying to find my happy place...

Just A Thought...

Why Can't They Make A Pill?!? by Baitulos
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A Few Of My Favorite Things...

     "IV's and blood tests and Mmmm R I's,

     Lesions and symptoms and a few sleepless nights,

     Living my life with MS really stings,

     These are a few of my favorite things."

     Everyone sing along now...

     OK, I know I'm pushing the envelope here a bit...but doncha WISH MS had more of a sing-songy rhythm to it?  Some catchy, little tune to raise our spirits and offer a tiny place of solace? 

     I'm scheduled for IV Solumedrol AGAIN at 2:00PM today...then, it's another MRI at 7:30AM tomorrow to add to my growing collection of beautiful brain pictures.  My current symptoms have NOT worsened, which I am quite thankful for, but I think I need a "song" folks, to get me through this one...any ideas?

     Oh, yeah...and please suggest one that won't offend non-MSer's if I were to begin belting it out in public places...or in MRI tubes...

This Blows Update...

     Tired of saying how much MS sucks...decided to go with a "blow" theme instead.

     Just stopping in long enough to type and update (and probably make myself thoroughly dizzy)...I've been communicating with Dr. SWWNBN via email over the weekend...that is, until she mysteriously disappeared from email contact yesterday evening.  It happens sometimes...the medical center's email police/guard dogs occasionally bounce my emails back into the blogosphere...you'd think by now the system would recognize my email for more than spam!

     Anyway, she gave me the option of gracing the doors of the local ER to start IV Solumedrol AGAIN this weekend or, if I could make it through the weekend, begin IV treatments AGAIN on Monday.  I opt to avoid ER's at all cost...they're handy I suppose if I'm in cardiac arrest, but otherwise, they are a bit of a nuisance to my psyche.  And, given I feel as if I could hurl at any moment, I don't think they'd really appreciate me all that much.

     So, symptom nutshell: 

1.  Bad vertigo again.  Of course, not nearly as bad as my relapse 2 years ago, but who's comparing?

2.  Highly annoying nausea from the vertigo.  Zofran is a wonder-drug for nausea, however...which Dr. SWWNBN stocked me up on at the pharmacy yesterday...so far no vomiting...thank you Jesus.

3.  Bad balance problems from the vertigo.  Walking "drunk" again.

4.  Left leg numbness/tightness/tremor-like sensation/weakness.  Seems like a lot to have all in one limb.  But if you have MS, you know what I'm talking about.

5.  Fatigue.  Need I say more?

     So, I'm off to find my elusive "position" where I can get my head placed just right and calm the spinning sensation inside it...does wonders for the nausea to remain still also.  I rather hate dozing, however.  I've been having that startled awakening sensation of feeling like I'm falling in my sleep...guess it just comes with the package.

     This really does blow...and suck.

Cane Or Able?...

     Can't stay long on "Cheese" today...still feeling very unwell.  I sometimes debate with myself WHICH MS symptom is worse...vertigo or pain?  Today, I'm voting on vertigo because it's here and it's in my face.

     Emailed Dr. SWWNBN again today, but doubt I will hear a response until Monday...as it should be:

FYI...vertigo persists w/ moderate nausea...Not sure if my tolerance is lessened or vertigo worsened...Zofran definitely warding off vomiting, but only have 2 pills left.  Feels best if I lie still with head in strange position and eyes closed.  Numbness in left leg w/ weakness and what seems like an intention tremor when I try to walk...gait is very unsteady and fell out of bed this morning, so just trying to stay supine and rest.

 

     Sorry I'm not feeling a bit more "chipper" today as I would much rather prefer to entertain you on "Cheese" with something else!  This is my life right now, unfortunately...I'm heading back to the couch to find my "position" again and keep my world from spinning.  I hate having to rely on a cane to feel able...

Oops! Guess I Should Explain...

     The previous post WAS a bit short and without explanation...partly because of lingering vertigo, partly out of pure laziness!  So, let me "s'plain" now...

     In my insomniac nights, I have been working on crap.  That's right...crap.  Designing crap...designing crap with a Multiple Sclerosis theme...designing crap with a multiple sclerosis theme that doesn't make me want to HIDE the fact I have MS because the "crap" is just too "cutesy"!  Cutting-edge crap, if you will...crap that puts a realistic face on MS...and frankly, crap that just makes me laugh instead of cringe.

     So, I found this website called "Zazzle" where you can design your own crap...T-shirts, mugs, magnets, hats...just about any kind of crap you can think of.  AND, you can make the designs of your own crap FOR FREE!  Beyond the free designs however, BUYING the crap isn't free...crap sales are the American way.

     The previous post and link to www.Zazzle.com is where my crap page exists...it's NOT a new blog (some of you have commented on that site already because there IS a comment function.  But BRAINCHEESE remains forever more right here!). 

     I'm not really into the idea of promoting or selling crap...I really think most of us have enough personal, accumulated crap of our own already!  But, I designed the three mugs listed on Zazzle for ME to purchase (and I have...haven't arrived yet, but hope they come in one piece...or three, intact separate pieces anyway!) and just wanted to share the designs with you, loyal (albeit questionably stable) readers.  The Zazzle site also would work for YOU to design your own crap or even those MS Walk Team T-shirts if you're one of those yearly walk team captains and need group wear for the event.

     Either way, the big, fat bottom line of THIS post is to let you know I only posted the site to show you what I had been working on "pre-anaphylactoid reaction"...NOT to try to convince you to buy any CRAP!  And if you've got a catchy MS thought you'd like to immortalize on "crap", but can't figure out how to do it, I'd happily try to assist you in building your crap dream...just as long as it doesn't involve TEDDY BEARS or some other kind of PAINFUL untruth about Multiple Sclerosis!  LOL 

     After all, we hear and see enough crap about MS that makes us cringe...why not tell the TRUTH about the real crap of the disease?...

Just Something I've Been Working On...

www.zazzle.com/baitulos*

It's Not Easy Being Green...

    

 

PHOTO OF ME, POST TYSABRI "ANAPHYLACTOID REACTION".

<---------------------

 

     Well, as would be typical for my day (and even my life for that matter), I had already written this post (eloquent as it were), only to have AOHELL once again LOSE the damn thing!  So consequently, I'm keeping 'er brief this time around.

     I've had that Matchbox 20 song running through my head all day today...in case you don't know the one I'm referencing, it goes something like this:  "I'm not crazy, I'm just a little unwell.  I know, but right now you can't tell."  And a "little unwell" I have been today...

     My day began with an email to Dr. She Who Will Not Be Named.  And, at the risk of splattering my sense of "unwell" all over you, here's the main excerpt:

Just an FYI...I don't think this is anything serious.  I've got a headache gripping the front of my skull, which may be the cause of increased dizziness/vertigo...not sure, but I think it's just dizzy as the room isn't spinning, just my head when I move it around...could also be from Vicodin, which I have continued to take today for the low back pain and knee pains (in left leg particularly) and shoulders...not nerve pain, more like deep joint pains.  Left foot consequently feels a bit "numb" as well, but no increased weakness or anything else unusual in the foot...low grade nausea could also be from narcotic.

Doesn't feel like a relapse necessarily, but I'm guessing "whatever" occurred yesterday may have triggered this (still not sure I just didn't have a bad hormone hot flash! LOL)...

 

     I'll let you know if anything worsens.

And, of course signed, "Your most pathetic, but endearing patient".

 

     That's pretty much my day, in a nut shell (pun intended).  My experience of yesterday I believe is best left forgotten...especially since I really don't have any memory of about 3 hours of it!  I was told I became stuporous, broke out in a rash and hives, and caused a bit of "concern" for Dr. SWWNBN.  I guess she actually EARNED her $3200.00 on THAT visit!  After IV Solumedrol and Benadryl, I'm "told" I became a very cheap date and conked out like a tranquilized elephant.

 

     The highlight of the event (and I am REALLY digging deep here for a highlight), was waking up and finding a young male seated in the recliner next to me...he told me I talk in my sleep...I told him he was not the same woman who was sitting there just a few minutes ago!  He let me know "that woman" left an hour or two earlier...we did share a laugh on that one.

 

     I knew something "bad" must have gone down when Dr. SWWNBN insisted on driving me home.  Of course, being the stubborn and controlling person I am, I declined said offer, but agreed to call her immediately when I arrived at the bat cave...she agreed NOT to call the police to do a welfare check on me, so we struck a compromise...a deal's a deal.

 

     The only important thing I DO remember is hearing the good doctor tell me my day's of TYSABRI may be over...I'm still working on the angle that I simply had a really BAD hormonal hot flash...she's not buying it.  I'm not giving it up...we'll just have to wait and see what kind of compromise we reach on THIS topic!  Of course, there may be no room for negotiation if the TYSABRI TOUCH nazi's have their way...for all I know, I've already been kicked out of the liquid gold club.

 

     Too bad no one is standing by to revoke my membership in the MS Club...now there's an "organization" I wouldn't mind giving me the boot...

Sick Of Doctors...Consulting The MAGIC 8 BALL...

     TYSABRI infusion #4...didn't go well today.  Experienced an "anaphylactoid reaction"...broke out in hives and got "stupid" until I was drugged into a gorked stupor.  Spent the entire afternoon sleeping off IV Benadryl and Solumedrol, but am home now (obviously!).

     TYSABRI treatments are now "suspended" until Dr. She Who Will Not Be Named reaches the big wig drug representative to "talk amongst themselves" and wring their hands.  Most likely, I will not be eligible for the drug for at least 3 more months, but possibly not at all.

     I'm feeling ill from drugs, completely bummed out about the reaction, and back into worrying about my longevity...sorry if this post is not my "upbeat" sarcasm...I REALLY am worried now and anxiety trumps humor at this point.

     Gonna go consult the Magic 8 Ball for answers...guess I'll just stick to "Yes/No" questions for now...

HOOHOOFRIGGINHOORAY!!!!!!!

     After days, weeks, perhaps even months of nagging and down right harassment, PJ has FINALLY graced us with the beginning of her very own BLOG!!!!!!!  It appears to be only 2 hours old as I type this...just a neoblog at this stage...but I, for one, am certainly looking forward to it's growth and reading pleasures!  Here it is:

Eons: PJ4810's Blog

     Be sure and drop by to say, "Howdy" to my timid blogging friend (I practically had to twist her gimpy MS arms to get her to do this!).  I have already sent her an email trying to clarify if I have to be over 50 to leave a comment as it seems the registration won't take my 1964 birth date and I WILL NOT change it to make me older!!!  Working out the bugs...one imbecile (such as myself) at a time...

Other News From Around The Globe...

     I've been so wrapped up in my own little world lately, that I haven't had much time (or energy) to blog hop, write emails, make phone calls, or basically participate in ANY of the common means of communicating with my important "outer" world.  So today, I thought I'd just briefly write a synopsis of at least SOME of the events and people in my "big" world out there...those of you who mean more to me than you may know!  And I apologize in advance for "outing" you on Cheese, but most of you either have your own public blogs/journals or you are just unfortunate enough to be in contact with a BIG MOUTH...me!

     First things first...HAPPY 50th B-Day to QuintaE, my mentor and advisor!  You've come a long way, baby (and you never once even smoked a Virginia Slim!).  I look forward to knowing you and sharing laughs and tears with you in the next "Fity".

     JOYCE...I remain humbly apologetic for not staying in better email "touch" with you and I DO hope lack of word from you means you are busily living your life on that opposite coast and just too damn happy and busy to correspond either!  LOL

     We've all been anxiously awaiting the SUZY report from CheeCaGo about Lil' Luv (her son) and sending up "big ass" positive thoughts/prayer/chants/energy/love.  The puppies are already two weeks old and the pictures on her blog of the little "mutts" are just adorable!  As for Da Bears and Superbowl hopes...only time will tell, but I'll definitely be watching that progress (or lack of) closely.  LOL

     MDMHVONPA appears to have a death wish, posting recipes for SPAM on his blog...at first I thought he was talking about "spam" as computer geek language since he IS one...but no, he's beer-battering the canned type!  Next thing we know, he'll be leaving the confines of the MANOR and traveling to Minnesota to carve busts out of butter blocks...a Minn. art form.

     I grow concerned when MICHELLE (Object of My Injection Michelle) doesn't make a witty post on her blog for what seems like days on end.  Come on, girl!  Humor us gimps...unless of course you're connected to a respirator and paralyzed and even then, you could blow in a straw to type a message...I DO hope you're OK.

     GDNPLNY1 you ROCK for offering up your shower during my time of hygiene and plumbing stress!  I'm beginning to think you're just a computer generated voice at KCCS however, as I haven't seen you in such a long, long time...fire up a flare out there so I know you're alive and kicking...

     My bestest buddy, ROJOO, is off this weekend to do a reading of his prize-winning poetry...good luck with that (not that you'll need it...luck, that is) my friend, and I wish work did not interfere so much with my LIFE as you know I'd be there in the audience if I could be!

     Welcome, WENDY, to the "fold" ( http://gandksmom.blogspot.com/ )...so sorry you're now a card-carrying MS member, but it does have its perks I suppose...like handicapped parking?  OK, I'm stretching on this one!

     JAIME, hope you made it back home across them there mountains without much difficulty yesterday!  And I'm also hoping your Novantrone treatments have you on the mend...we'll all await your neuro's report, but I'm pouring the bubbly in advance to toast your progress!

     You just make me laugh so, "T-Dawg", and for that, I am forever in debt!  I'm glad the "momma" had a good visit, although I STILL think she would have enjoyed "Bodies" even if she believes it would have totally grossed her out!!!  Remember to yell, "Rock 'em Sock 'em Robots" if things get too stressful...

     So, when do "we" get the results of hubby's MRI, MISS CHRIS?  I know I, for one, don't necessarily believe OLD AGE would be causing his symptoms, even though I'm kinda hoping for that...just seems too suspicious.  And could you post some more about Tai Chi?  I can't get my exercise unless I live vicariously through your blog!  LOL

     You've got one full week (or almost) under your belt of NanoBlogOwhatEver, ZEE!  And I am pleased to be known as one of your loyal 3 readers!  The "bufont" doggie hair photo was to die for...I envy Rennie...she's got more hair than I do!

     CHARLES...dude!  I'm working on that MSBPodcast thingy!  But I'm basically mentally challenged, typing from dial up, and I don't even OWN an IPod!  I do check out the website though, and at least READ what's there even if I can't for the life of me figure out how to HEAR the music..."tarded", just plain tarded I am.

     Tysabri is rockin' LAUREN'S world, from what I can tell on her blog...the self-inflicted toilet transfer WITHOUT assistance (although not necessarily a "wise" move on your own, but who among us really is WISE??) seems just what you've needed to get a jump start back on the road to recovery (and "jump start" as a pun was intended)!

     I haven't heard from some of you lately (CROMAGMOM, SBBRIDGES, BILLIBOTTON, etc), but I will assume you are all alive, kicking, and raising hell...as it should be!  Wishing any and all readers of Cheese health and happiness...

     I'm STILL trying to convince PEEJ to get off her literary duff and start a blog herself!  She's funny, she's gifted, she's talented, and probably just needs some electric shock to get 'er going.  LOL  Did I mention she's also SMART when it comes to MS?  But seriously, if you need to continue to deprive the rest of the world of your talents, so be it...(I KNOW there will be a comment now!)...fanning the spark here...

     And you thought I had forgotten you, didn't you EB????  Just saving the best for last...although I will miss you during your train travels of the holidays, I will continue to carry on the "spirit" of dissent in the "mine".  LOL  And when are you going to display some of your photography again?  You're holding out on us, too, talented one!  Have fun eating elk, snake, pheasant, and what other "game" the family finds for T-Day!!!

     And to all of my BUDS at ATM (if any of you even READ this besides PEEJ!), "I love you, man"...OK, attempt at borrowing cheesy beer commercial did not go over well, did it?!?

     Did I miss anyone???  I'm sure I did, but it wasn't intentional believe me!  There are a few of you who have sent me personal emails, which I fully enjoy reading, but I know so little about you it would only be name-dropping here (start leaving comments on Cheese and your life can become an open book, too!)  And if I HAVE missed you, leave me a comment or drop an email voicing your complaints regarding my memory...I'll forget what you write or say in five minutes anyway! LOL

Mother Nature Is Pissed, And I'm Not Exactly Thrilled Either...

     It just continues here in the Pacific Northwest...the saga of soggy Seattle has no end in sight (say THAT ten times fast, will ya?!?).  I've been so focused on weather and plumbing problems, I've almost FORGOTTEN I have MS!

     So far, this month of November (and need I remind you, we aren't even half way through?) has been the 4th rainiest month in 60 years here in the Emerald City...and the rains continue to blow in.  The mountain passes are expecting somewhere between 2 and 3 feet of snow just THIS weekend and Seattle is once again bracing itself for high winds and...you guessed it...RAIN.

     I know Jaime over at My MS Journal was coming from the "other" side of the Cascade Mountains for a neurology appointment today to Seattle...I DO hope she made it here and back home without losing her last myelinated nerve!  This weather has certainly been tapping on my last, good nerve...

     Today, I managed to get an early morning soaking at the bus stop and pop a perfectly good umbrella in the wind, rendering it useless.  Then later in the day, I skillfully dropped my clipboard in a massive curb river...this was NOT pretty as documents soaked up the street runoff like a sponge!  And after all of the wet weather, I returned home to a freezing cold abode because the temperatures had dropped throughout the day and I had forgotten to leave any heat on.  Thinking "outside the box", I decided to plug in a few small heaters, which managed to pull sufficient juice to knock out a fuse, and I was in the dark.  All of this because of the weather.

     My cat, Meha, seems to be the only one between the two of us untouched by the weather...she's resting peacefully on my arm right now, stealing what last ounces of body heat I am still generating.  I believe she is down right "comfy".  I, on the other hand, am sheepishly retracting my summer cursing of the unusual dryness and heat we experienced and mumbling under my breath...at least the mumbling is generating some body heat in my face...

Fa La La La, Dooby Doo Wa!....

     You may not recognize the sound of one hand clapping, but there's no mistaking that noise you're hearing...I'M SINGING!!!  Yes, it's true...Ray The Drain Guy is my all-time super hero.  Let the fat lady sing!

     You'll have to read back a couple of entries if you're new to "Cheese" to understand what the heck I'm talking about these days...good grief, even I've forgotten what my focus is lately because I've been overwhelmed with sewer problems at my shack.  I've spent the last 4 days deeply emerged in the muck of plumbing problems...truly a place akin to hell.

     Today, the absolute love of my life, "Ray The Drain Guy" (you know I would NOT be singing his praises had he left me swimming in my sewage mire), came by to take a look at the very expensive mess occurring underground in my pipes...the same pipes I have not been able to USE since the torrential rains of Seattle began falling last weekend.  Ray The Drain Guy was a last ditch effort before sinking an estimated (and a beginning estimate only) five grand into a major sewer pipe repair.  I got Ray The Drain Guy's number from a total stranger via a cold call on the phone...it seems Ray The Drain Guy can only be reached by "word of mouth"...I was cautiously optimistic and hid the good china just in case Ray The Drain Guy also was connected to any six feet underground work, if you know what I mean...

     Around 11:30AM, my phone mysteriously rang and a man on the other end said, "Hi.  This is Jeff from Ray's.  We'll be there in about 15 minutes if that's OK."  I advised the caller this would be fine and carefully asked if "Ray" would also be in attendance.  "Oh, yeah," Jeff says, "He's here, too," and hung up. 

     Moments later, an unmarked, white van pulled into my driveway and two men dressed in flannel shirts and full beards stepped out of the van.  The eldest of the Grisly Adams-type characters says, "I'm Ray.  What's the problem?"  I proceeded to show Ray (and son Jeff) into my home and discuss my situation.

     Ray The Drain Guy is a man of few words...he doesn't prefer to discuss his "plan", but instead just act on it.  He tells me, "Well this can't be done from in here (inside my home).  We're gonna have ta try to bust a pipe outside and see what happens."

     I watched Ray the Drain Guy and son Jeff unload what looked like homemade tools of cable wire, motors, electrical tape, and shovels.  (I later learned the tools WERE homemade...the very reason they worked so well!)  Then, I watched son Jeff dig around in my hillside until he located a sewer pipe (wasn't too hard to find as raw sewage was seeping out of the hill...how could anyone else PAID to find this miss the problem?!?)  Without much warning, Jeff busted into the sewer line and a shower of "muck" burst forth onto the hillside.  "Got it," Ray announces.

     At this point, a cold sweat poured from my forehead as Ray The Drain Guy started to create the very problem I was told I had in the first place...a busted sewer line!       Four and a half hours later however, Ray The Drain Guy and son Jeff had managed to not only locate a pool of sewage in my hillside, but also FIX the very problem!  My toilet runneth but not overfloweth again!!!

     I paid Ray The Drain Guy in cash...he prefers it that way.  I have no record he was even here and no bill to produce to anyone who were to ask.  Son Jeff will return sometime on Monday or Tuesday next week to cut out the section of pipe where they were working and put in a clean out in that area of the drainage system...He doesn't have any time before Monday because he's going elk hunting this weekend.  I should have guessed this from the beard and flannel.

     I asked Ray The Drain Guy if he had a business card.  He reached into his pocket with sewage-stained fingers and pulled out what looked like an address label with "Ray's Drain Tech" and a phone number typed on it in small print.  He says he doesn't carry business cards...probably because he really is a man of few words.  Or maybe he was on to me and realized I was hoping for something in print that might reveal what Ray The Drain Guy's last NAME is...I still don't know and I really don't care.  The guy just saved me a buttload of money and heart ache!

     The first thing I did late this afternoon after Ray The Drain Guy and son Jeff left was to take a long, hot, luxurious bath.  I watched the water do it's beautiful swirl down the drain as several gallons of liquid miraculously disappeared down my newly unclogged pipes.  One truly does not appreciate the beauty of a tiny drain whirlpool until it is taken from us...all is right in my world again.

     I heart Ray The Drain Guy...    

I'm Sick Of The Political Rhetoric...

     Perhaps he was wise beyond his time when Thomas Jefferson said, "A democracy is nothing more than mob rule, where fifty-one percent of the people may take away the rights of the other forty-nine."

     Different day, new mob.  Another group of lemmings instinctually running to their death?  I guess time will tell as it always does.  Nuff said...

It Ain't Over 'Til The Fat Lady Sings...And I'm NOT Singing!

     I am dreaming about plumbers...filthy, nasty, sewage-drenched plumbers...plumber's butt...plumber's tools...this is ALL I see or can think about!

     As you might have already guessed (and decided to RUN while you still can from this blog), my plumbing saga continues.  It's been yet another day of "spit" bathes, phone calls, and decisions about which kidney I should consider selling at this point to pay for my repairs.  I understand fully now why patients were snarly at the idea of a bed bath (this was back in the Stone Age when I did my nurse's training)...if I HAD anyone here besides myself to yell at during my bucket bathing routine, I'm sure I would!

     Right now, the plan is to have "Ray The Drain Guy" come out and give his best shot at clearing whatever monster is lurking about 80 feet out in my sewer pipe.  The city has already been out and said essentially it is NOT their problem...I think they were smirking and laughing as they drove away...damn government employees!  Oh wait, I AM one of those creatures, too.

     Ray The Drain Guy will be out tomorrow afternoon and literally "give it a whirl" in the sewer system...if Ray The Drain Guy can open things up, I swear I will never mock another plumber for as long as I live.  If he can't, well then they're just fair game again for cheap shots.

     If Ray The Drain Guy fails to win my undying love, then I'm back to square one...kidney for sale.  I doubt the surgery to remove my kidney will hurt as much as bending over and "taking it" from the Five Grand estimate team who will then come out and fasten themselves to my hillside with ropes and pulleys and DIG my side sewer up by HAND!

     On a good note (if you can call a Federally Declared Disaster "good") the rivers here in Western Washington have crested and the massive flood waters are beginning to recede.  Washingtonians may soon be able to DRIVE to their homes (at least what is left of them) versus taking a BOAT.  And, although more rain is still in the forecast, it's not expected to fall so quickly and cause more flooding.  This is "good", right?!?

     So, as a hopeful distraction, I'm going to head over to my favorite MS blogger's sites and immerse myself in someone else's problems or sick sense of humor.  I doubt even this action will cause me to "sing", but at least it might slow the nervous plumbing willies circling the drain in my stomach!...  

Alms For The Poor?...

     It's gone from bad to worse, as you can most likely tell by the 3:00AM posting time of this blog!  The plumbing fiasco has now turned into a plumbing NIGHTMARE and the idea of potentially selling a kidney for cash is NOT such an outlandish one at 3:00AM...perhaps after a few hours of sleep, my world will return to it's general shade of rosy-ness.  And, as always, wild monkeys could fly out my butt, too...there's a 50/50 chance of either happening (just as long as I don't need to flush 'em)!

     Day Two of the Sewer Scenario...24 hours WITHOUT a shower or toilet flushing began quite early this morning.  Being the diligent tax payer I am, I drove to my office's satellite location at the County Hospital to drop the kids off in the pool...pinch a loaf...use the facilities...and take advantage of public restrooms late last night as I worked myself into a sleepless tail spin, worrying I "might have to go" in the night.  Somewhere in my homeowner tax structure, I'm sure I've more than paid for a few flushes and TP sheets over time...the county OWES me that much!

     I was able to get a few winks in before starting down the long and treacherous road of plumbing/sewage woes today.  It started with a call to Roto-Ripoff to verify what time they were to arrive for the "scope" procedure today...low and behold, they didn't have me scheduled.  I popped a blood pressure pill and proceeded to muscle my way onto the schedule I had been promised to be on YESTERDAY.  Of course said technician did NOT arrive at said time, and I spent several hours lying in wait for the sewer rat.

     When he did arrive, he informed me the rate per hour quoted yesterday was wrong...I bent over and signed his consent form between my knees, agreeing to pay an even higher hourly rate than quoted.

     Dear Micah was a bit more professional than "Tom" from yesterday...Micah actually tried to clean up after himself and English was his first (and probably only) language...we got along just swimmingly.  AND he neither splattered more sewage around the walls of my bathroom, nor did he tear the large hole in the wall made yesterday by "Tom" any larger...I was in love with the boy.

     The pipe scoping was very similar to a colonoscopy and frankly, I got a little PTSD going while watching it!  Micah pushed and prodded the tiny camera, snaking it down my pipes, until he could go no further.  "Something" was blocking the channel, but what it was remained a mystery.

     Modern technology never ceases to amaze me.  It seems there is some kind of sonar device in the end of the scope and with another tool above ground, the technician can locate the exact tip of the scope and get a reading how far underground it is...I must say this part was truly fascinating...even if we were both outside on the steep hillside in the pouring torrential Seattle rainstorms.

     Micah then proceeded to provide me a bid for the repairs...he should have warned me as there was a brief moment of possible medic 911 need.  Somewhere over $5,000.00 and days later, he "might" be able to resolve the problem..."might" be able to is the scary statement.  The sewer line would need to be dug out by hand because of the mega hill slope it is buried in some 4 feet below ground...that same slope you may recall I had to crawl off of earlier this summer after my tennis elbow extravaganza of weed wacking...if it were only longer, I'm sure one could ski freely down it to the street below.

     So now I'm stuck wrestling with what to have done and how to make ends meet according to my decisions...sell a kidney or stop eating and drinking fluids so I no longer NEED sewage drainage?  The life of a home owner...

     As you can tell, I've been pretty preoccupied these past few days...sorry if I have been remiss in keeping up with blogs, emails, etc.  I have had to load myself up with Klonopin tonight and even THIS seems to have little effect on my anxiety or sleep.  The cat IS dozing nicely beside me, however!

     Hopefully, I will awaken tomorrow morning (well, today actually) and have some sort of "sign" or epiphany as to what I am suppose to do.  In the meantime, I'm practicing "pressure" tolerance in the lower 40 to try to avoid unnecessary repetition of elimination!  Colostomies and urinary caths are looking better and better each day...

Dammit Jim, I'm A Doctor...Not A Plumber!

    As "they" say, when it rains, it pours...and it's coming down in inches by the hours here in good old Seattle.  Streets are flooding, rivers are cresting, and patience is thinning.  It's only right I should develop friggin' plumbing problems on the RAINIEST day of the year!

     My day started as usual this morning with the mandatory hygiene and bathing routine.  I was standing in my shower minding my own business, when I started to hear a strange gurgling sound coming from my toilet...this was VERY odd.  I checked it from the shower and it looked as though air bubbles were coming up through the trap...I got a bit concerned.

     Then, suddenly and without warning dirty water started rising in my tub where my almost clean feet were standing!  I nearly broke a leg jumping out of the cesspool of water.

     I immediately called dear old Roto-Rooter to get someone out as quickly as possible to determine what on earth (and WHAT earth) was happening in my pipes.  They promised a 4 hour window to show up, which turned into a 5 hour arrival...I was told, because of the flooding rains, they were inundated with calls...I told them I didn't care...I'm an anxious homeowner with an over-active bowel and I NEED my toilet to work!  Screw bathing...

     Vladamir, AKA "Tom" (that's what it said on his shirt, but believe me, English was DEFINITELY a very recent second language) arrived around 5:00PM and mumbled something to me in heavy accented English...it would cost me $160.00 an hour..."maybe take one or two hour at top"...I signed the paper consent form and bent over for the probable "plumber's screw".  I've learned from experience, nothing EVER costs what they say it will or be as easy to repair as they predict.

     An hour and a half later, "Tom" dripping in sweat, sewage remnants covering my bathroom floor, my cabinet and walls marred from equipment, he announces to me he can't fix the problem...he still charges me $260.00 for his time and tells me"they bring scope out tomorrow...probably broken line".

     I have the audacity to ask "Tom" how much this SCOPE will cost and he quotes another $300.00 (you can see where this is going, can't you?).  In the meantime, I am not to run any water in my pipes, which includes flushing a toilet!  There will be no bathing and no doing dishes (not that I'd be rushing to do dishes anyway, but I like having the OPTION of cleanliness!).  RR can't even give me an estimate on WHEN they might show up tomorrow...they've been inundated with calls, after all.  And once the scoping procedure is done, I have no idea how long it might take (or at what cost) to get the repair work completed...it is literally a "crap shoot"...full pun intended.

     So, I'm sitting here tonight after a very stressful day, paranoid I am beginning to have some "stank" on me, trying to figure out which friends I might be able to BRIBE a shower from locally (thanks, Suzy...I'm sure you'd offer, but the plane fare just wouldn't be cost effective), and hoping I will not have to donate a kidney to pay for the repairs.  Have I mentioned I HATE plumbing problems?...

I Stand Corrected...Notes From Portland, OR...

     Yesterday, you heard me proclaim that Seattle, WA, receives more rain than Portland, OR.  Well, according to ZEE, who considers herself a "Portlandtonian/Portlandite/Portlandisher"...OK, ah just someone from Portland (!)...her region of the world down there (or what Seattlites like to refer to Portland as, "down under") is getting a mighty blast of weather as well!  It seems even Oregon is not being spared from this recent rash of Pacific storms.

     Somehow however, ZEE has managed to not only keep her electricity on, but also respond to "that post" back on 10/24/06.  She apologized for her delay in response, but I just chalk it up to being on Pacific time (wait a minute!  I'm on PacTime, too!...hmmm).

     As you will soon read, Zee was only recently inducted into the MS Hall Of Fame...diagnosed this summer, 2006, she has already begun a blog at http://www.rathnait.net/blog/ , where she talks openly about her MS, life, and other fun topics!  LOL  If you get a chance to swing by her blog for a cup a Joe and some reading time, you will be pleasantly enlightened.

     So, let's all give a warm welcome (and some dry clothes) to ZEE:

1.  How old were you, where were you, what time of year was it, and what
were you wearing when you "received" the lovely diagnosis of Multiple
Sclerosis?

I was diagnosed on June 23, 2006, when I was 30. It was June in Portland, OR, and the area had been going through a bit of a heat wave. After reviewing my history (only one previous "relapse" - optic neuritis in 2002), my MRI and doing the neurological exam, the doctor told pretty much diagnosed me on the spot, the first day he met me. I was wearing a t-shirt and a pair of black Gap drawstring pants, because it was excruciating to wear anything else like jeans. I also remember I was carrying some Birkenstock-like sandals, because I had to have shoes but they wouldn't stay on my feet and kept tripping me.  So I wore them to and from the car and as soon as I'd enter a building I'd take them off. I got some pretty weird looks but I figured I'd rather have weird looks for walking barefoot than for stumbling around looking drunk. :)

2.  Who was the first person you told about your MS and what was their
reaction?

I can't remember exactly who was first, because there were several people I told one right after the other: I know for sure my mom, my dad and my best friend were called and told immediately after I left the doctor's office. My mom sobbed; my dad and best friend were a bit less emotional and let me know they'd be there for me if I needed them. At that point I wasn't sure what I needed other than to get my current symptoms to go away!! My dad drove me to the outpatient infusion center every day for a week, and for the first three days my best friend sat there with me, to keep me company.

3.  What's your greatest fear and/or secret about your MS and what HASN'T
come true or manifested from your MS that you thought would happen or affect
you?

Well, right now - being so newly diagnosed - my biggest fear about MS is about the unknown, about what hasn't happened yet that might happen. Long term, my biggest fear is that I will lose mobility and will have to be dependent upon someone else.

4.  What's your worst symptom(s) or the nagging thing about your MS that
just won't leave you alone? 

I have this very strange paresthesia on the left side of my torso and down my left arm that just doesn't seem to want to go away. It doesn't feel like either numbness or tingling - it's just a strange sensitivity thing that gets progressively better and then worse, then better then worse. It's definitely the worst symptom right now.

5.  Who/What supports you/comforts you in your life and where doyou go to
find it/them/calm/etc.?

#1: my dog, Rennie. She loves me unconditionally and she's always there when I need her. Plus, having another living being in my life keeps me from throwing myself a pity-party too often. She makes me laugh, which I'm convinced is good for me, too.
#2: Writing. I find a great deal of release from writing in my blog and/or my off-line journal (for those things I don't want to air publicly.)  There's something about the act of writing something down, getting the words out there, that takes the power out of my fears or worries or concerns.
Plus, with the blog, it's great to get other peoples' perspectives on my MS stuff.

6.  And last, but not least, what do you still have on your agenda to
achieve/finish/reach/summit/climb/accomplish before retiring to that great,
golden Club Med in the sky?

Well, I've already run a marathon and lived in Boston - which were two of my big goals for a long time - so now I'm working towards finishing my web design diploma and getting a job that I truly love. (I like my current job but it's not my passion.) I want to see more of Europe.  I want to meet Mr. Right and settle down. I'm not sure about kids - seriously undecided on that point - but I feel ready to be back in a loving relationship. On the more practical side: I want to get my outstanding debts paid off.  I worry about when/if I won't be able to work at some point in the future, so I'm hoping to
get all my debts paid off now, while I still can work, so I can cross that off my "Things to Worry About" list. Plus, it just seems like the right
thing to do. :o)

     Welcome, Zee!  It's great to meet you and perhaps you and PEEJ will have some Boston stories to swap? 

     I'm off now to stare out the windows and pout about the rain...it's truly a productive Sunday...LOL

Rainy Days And Mondays Always Get Me Down...And Saturdays And Sundays And...

     And to think this bothers me, considering I live in SEATTLE!  What's wrong with THIS picture???

     Actually, it's somewhat of a myth that is told to potential tourists...the Seattle Rain Factor.  It IS true...it does rain here more than say Phoenix, AZ, or even Portland, OR.  But rain here in this part of the Pacific Northwest is usually something no more than drizzle for days on end...not like what is already predicted for this weekend.

     I was watching the late night news yesterday and I was informed by my favorite meteorologist that not one, not two, but THREE different storm systems are scheduled to "hit" the region in the next 72 hours!  The storms are bringing winds, heavy rain, probably flooding, and a "damper" to my mood.

     I'm not considerably worried about the high winds, although there is a big evergreen tree in my yard that I often wonder about...will it be strong enough to keep it's roots in the ground and not come crashing down on my roof?  I have candles, flashlights, and canned food should the wind knock out power lines...I can always find a good book on my shelf to read by candlelight.

     The heavy rains and probable flooding are annoying, but not a nuisance to me.  After all, I live many feet above the nearest street on a hill!  The entire city would need to go under a 100 feet of water before MY place can flood.  The streets are a different matter, but if I don't have to go anywhere, I won't...problem solved.

     My "mood" is a much bigger problem to tackle...one I'm pretty certain the Seattle Power and Lighting Company really can't fix.  It's true I already feel "under the weather" with a cold/flu-like situation brewing in my head and chest...that certainly does not help my mood.  I have only stayed off work one day and already I have that Jack Nicholson "Redrum" feeling (from the movie, "The Shining", if you're in need of translation)!  I NEED to get out of the cabin...I can only entertain myself for so long with the Internet or the TV (andyou slacker bloggers out there aren't even going to post anything on the weekend, are you?!?).

    I've got that sad Karen Carpenter song rolling through the crevices of my grey matter...you know the one...it's the title of this blog.  And I can't seem to distract myself from the antsy-depression settling in my bones. 

     You'd think I'd be "happy" to have this down time...I don't really have to be anywhere this weekend, no one is demanding I speak to them (except the cat), and I have the days to myself.  Yet STILL, rainy days and Saturdays always get me down...

Bodies, The Exhibit. Where Do I Begin?...

     It has taken me two days to find the words to even BEGIN to describe my experience of viewing The Bodies Exhibit, which is being displayed here in Seattle currently. It’s hard to formulate a cohesive paragraph when I have so much internal, conflicted feeling and thought rolling around inside me. But, as usual, I like to tackle the "big stuff", so I’m gonna give it a try.

     On Wednesday this week, I announced to you I was headed out to see The Bodies Exhibit…partly out of Scorpio-induced morbidity, partly out of sheer scientific interest, and somewhat out of a need to see for myself what the "controversy" was all about.

     In case you’re not familiar with this exhibit OR the controversy surrounding it, here are just a few websites and snippets from the sites to fill you in. Of course, to get the full flavor, you might want to read the web pages in their entirety:

     From a newspaper in Florida (I believe), http://www.sptimes.com/2005/07/28/Tampabay/Who_is_running_man.html , comes this snippet:

 

"Who Is Running Man?"

They came from China unidentified, unclaimed. We don’t know their names or if they mind our stares. TAMPA - In death, they have a relationship with the world far more intimate than when blood ran through their veins. Now, they expose the core of their being to thousands of strangers.

Yet when they were alive, the people whose preserved bodies soon will be on exhibit at Tampa's Museum of Science and Industry never gave their permission to be part of such an the unusual public display.

The bodies belonged to people from China who died unidentified or unclaimed by family members, said Dr. Roy Glover, a retired University of Michigan anatomy and cell biology professor and spokesman for "Bodies, the Exhibition," which opens next month at MOSI. As a result, their remains went to the Dalian Medical University of Plastination Laboratories in the People's Republic of China. The university in turn charges a fee to use the bodies for educational purposes.

"We acquired these bodies. They were not donated," said Glover, medical director for Premier Exhibitions of Atlanta, the same group that brought the Titanic shipwreck exhibit to MOSI in 2003-04.

That contradicts what Glover told the Times two weeks ago when he said all the bodies had been donated to medical facilities.

"There is no way for us to tell who they are," said Wit Ostrenko, president of MOSI, which on Wednesday unveiled "Running Man," one of 20 fully preserved cadavers in various poses that will be part of the 14,000-square-foot exhibit from Aug. 20 to Feb. 26.

Glover hesitated to speculate what these people would have said about how science is using their bodies.

"These particular individuals are helping us to understand our bodies," said Glover. "I think they would be pleased."

Some experts in medical ethics aren't.

 

     The article goes on to talk about concerns surrounding the "procurement" of bodies and organs and the process required legally in the United States to obtain said bodies or body parts…most of these laws DO NOT exists in other countries.

     In fact, even here in good ol’ King County/Seattle, sometimes these laws are not followed. I offer this article   http://www.kirotv.com/news/4335506/detail.html from one of our local TV stations as proof. The gist of the article surrounds the local Medical Examiner’s Office (ME) SELLING THE BRAINS of deceased schizophrenics to a research facility in Maryland. AND, it seems my local ME is not the only agency nationwide who has been profiting from these sales…all without the expressed consent of the patient or even family at times. Take a moment to give it a read and THEN begin to worry about how your body may be treated after death!

     And still, there is another fascinating article (if you’re interested in this topic, that is) from the Miami Times, in which a play-by-play account is offered regarding each display in the exhibit:  http://www.miaminewtimes.com/Issues/2006-10-05/culture/art_full.html . It DOES contain some fairly graphic reading, so if you’ve got a queasy stomach, you might consider skipping the article.

     The article also touches on the possibility the display "specimens" (for lack of a better scientific word) may have come from persons jailed in China who practice/follow the principles of Falun Gong, a spiritual practice that has been banned and outlawed in Communist China. The followers of Falun Gong claim thousands have been persecuted and even murdered in China for following this practice…noting three labor camps are very near the corpse-processing factory where specimens are processed via a procedure called, "Plastination"…the exact place where The Bodies Exhibit specimens were obtained.

     So…what was MY take on the matter/exhibit/display? Well, it’s really quite complicated to explain, but I’ll try!

     Several friends "warned" me I should NOT go to this exhibit and I should NOT give the exhibit my precious $29.50 because doing so was simply promoting something unethical and morally "wrong". This only made me more curious because I tend to be a hands-on, do it myself, see for myself, DECIDE for myself kind of person. But, I took their concerns into consideration and I went anyway. I was aware of the ethical controversy.

     Scientifically speaking only, I would have to say this exhibit was/is truly remarkable and an amazement. The intricacies and details displayed are truly something never seen before and, for most people (unless you worked on cadavers in secondary schooling or, dare I say, have had reason to "carve" on a human being) something that can barely be conceptualized. The educational factor is quite high…one could not enter and exit the exhibit without learning "something". The entire process of plastination in itself is absolute fascinating science. I would highly recommend the exhibit for someone deep in the study of anatomy and physiology.

     Ethically and morally speaking, I am not without concern as to the origins of the bodies on display. I DO hope none of these bodies, when they were alive and containing the souls of living beings, were mistreated or simply "harvested" for the sake of the exhibit. But I have no way of knowing WHAT might be true about that. Still I wonder…after seeing so much in the news about the SALE of organs and tissues here in the USA for PROFIT and done so illegally, I can’t help but believe countries with even less strict laws would not be doing the same. Because it happens in my own back yard however, I don’t dare point an unknowing finger at ANYONE or group until the facts are in…facts that we may never have.

     Along these same lines, I will admit I was a bit "shaken" by the fetal/newborn section of the display. Certainly I was tastefully warned what was to come near the end of the exhibit…a large sign warned me and gave me the option of exiting through another door rather than continuing on through this portion of the tour…being who I am, I pressed forward.

     What I saw next, gave me pause…I was somewhat taken aback by my own internal response to viewing preserved fetuses in glass containers. After all, I am a strong advocate of personal choice and have even volunteered my nursing services at the Planned Parenthood Clinic in Houston when I lived there…I did post abortion room recovery (one day, if interested, perhaps I will write about THAT experience and my life of death threats and threats of assault/being spit on in the name of "Jesus and the right to life"…obviously just not MY life had a right to go on!).

     This room of the exhibit had a very eerie feeling…maybe that’s why the exhibitors saved it for almost last. People somberly filed through the room, unlike through the other rooms of displays, as if passing through a graveyard. It FELT like a graveyard. I peered mindlessly, but not without feeling, at the 7, 9, 12, 14, 16, and 24 week fetal tissue displays. Even at 9 weeks, tiny little hands and feet could be seen on what otherwise looked like a tadpole with extensions…but there was no mistaking the hands and feet…they were definitely there.

     I am NOT pro-abortion, but I AM pro-education, pro-criminal justice, and pro-choice. And when the latter three of the four "pros" fail, abortion is sometimes left standing alone. I do not condone abortion, but I also do not condemn it. Perhaps if more adolescents, sexually active men and women, and JUDGES were forced to walk through this portion of The Bodies Exhibit, there would be no need for this topic to remain such a heated discussion…there would be no need for further abortions or death and bomb threats against clinics…people would remember there simply is no mistaking the hands and feet…

     As I wondered through the main portions of the exhibit, my friend "T" and I came across a rather tall, somewhat out of place cadaver…this specimen did not seem to fit in with the others. We both stood staring at "him" as hackles rose on our necks…something energetically felt wrong about "him". Not knowing what the other was thinking, we reconvened away from "him" and began to whisper to each other…

     "He’s creepin’ me out", T says, and I shiver as something creeped up my spine also. We both began to discuss our "hit" on "him" and decided "he" had done something really bad when "his" soul inhabited "his" body…there was something sinister about the energy around "him". "He" was the first of such psychic/energetic awarenesses.

     As I made my way through the rest of the exhibit, I would find myself wondering about the souls no longer in their vessels…the vessels we call our bodies. What were they like? Where did they come from? Had someone loved them and they returned that love? How did they die? Did they now rest peacefully? Would they approve of their plastic flesh, bones, and organs being on display for all the world to see? Would I approve of my flesh, bones, and organs being filleted and examined by total strangers if I had a choice?

     I left The Bodies Exhibit with a lot to consider…