Friday, June 30, 2006

The Grass Is Always Greener...On My Weekend!

     So far today, it's been a two-bee-catch-and-release day...which is far better than the 7 bumble bees I removed from inside the house yesterday!  I've resigned myself to having my flying friends indoors throughout the summer as I can't bear the idea of extermination on the little critters.  And from everything I've read, once fall arrives, they will be moving on anyway and do not return to their previous hives...it's amazing what information one can obtain off the Internet!

     I committed to hosting a backyard grill party on the 4th of July.  I don't know what possessed me to do this!  It's not the party itself that brings cold shivers up my spine, but the preparation for it!  After all, I do love my dear friends who will be in attendance...but...my darned yard is embarrassing once again.

     I don't know why my grass ALWAYS seems taller and greener right before my weekend.  It seems like I just mowed the green pasture yesterday and it's time to do it again.  I think it waits until I have time off from work, then in the dark of the night it has a growing spree just so I will have to pay attention to it the first moment I have to spend at home!  I believe my grass to be highly intelligent in this way...

     So, it looks like I will be spending my waking "cool" moments in the morning and late afternoon mowing my lawn and getting my backyard ready for visitors.  Of course, then there's the house INSIDE.  There will be a frantic bathroom and kitchen clean, straightening up of the living room, vacuuming...WHEW!  I'm already exhausted and I haven't even begun!!!

     I'm hoping once the 4th arrives, I will be able to just relax and enjoy the company of good friends and food on the grill.  At least I'll feel like I have THAT day off anyway. LOL

     Off to do bee patrol again...since I started writing this, I now have discovered 2 MORE bumblers in the kitchen window.  I hope they really get it that I am trying to SAVE their little lives by coexisting and my catch and release plan...perhaps THEY could mow my lawn and clean my house as a sign of goodfaith!

Thursday, June 29, 2006

To Bee Or Not To Bee...

     I've heard people in the MS circle say bee sting therapy helps "cure" or lessen the symptoms of Multiple Sclerosis.  I've never been one to endorse this idea/treatment and I'm certainly not ready to change my mind about it now.  The problem is my home has become the nesting (or is it hiving?) grounds for a group of very large, black bumble bees and I'm growing apprehensive these bees may have a "different" plan for me!

     Three days ago, I discovered a large bumble bee roosting on my ceiling when I got home from work.  Being the sometimes diligent earth steward I am, I simply got a large container, captured the bee, and set it loose outside in its natural habitat.  I thought it must have come in around a screen or something...after all, it has been ungodly hot here in Seattle and I haven't been the most watchful of my windows as some of them don't even have screens on them.

     The next day, I discovered three more of these rather large creatures buzzing or dead in my window sill.  I was beginning to think there was now a conspiracy, so I quickly secured any outdoor access they might have, captured the two live bees, took them back outside, toss the dead bee along with them, and decided the problem was remedied.  I was wrong.

     Yesterday...more bees.  Now I figured out they were coming in via some other unknown location so I searched the outside of my home with a fine-toothed comb.  To my amazement, I discovered the little stinkers (I don't think they smell at all actually, but calling them "little devils" seems offensive!) crawling in and out of a hole in the siding where the phone line and cable have been brought in!  Not wanting a bee hive in my wall, I got out the caulking gun and closed the hole, said a little prayer for the death of the bees still trapped inside, and went to work.

     I was sitting in my living room a few minutes ago eating my morning toast and heard that familiar sound of a bee buzzing between the blinds and the window.  Yep...another bee.  Short of calling an exterminator (which I neither want to pay for nor do I want the bees killed...and I certainly don't want my entire WALL knocked out!) I'm not sure what to do at this point.  I think I'm resigning myself to co-exist with the bees!  The bee this morning may simply be a "left over" trapped in the wall...that's what I'm hoping anyway.

     If I can't get rid of the bees, perhaps I will need to reconsider my position on bee-sting therapy and Multiple Sclerosis.  Who knows...maybe there's a "cure" living in my walls and I'm just to dense to figure out my prayers have been answered!

Wednesday, June 28, 2006

I Seem To Be "Listless"...

     I have always been a big calendar and list keeper.  I'd like to say this is because I have Multiple Sclerosis, but I have to face some facts:  I've kept lists my entire life as a means of staying organized.  It IS true that my list keeping has increased since my MS diagnosis, but MS was not the cause of my notorious "listing".

     At one point in my life, I used to manage 3 calendars and about 5 lists.  I HAVE been able to consolidate some of my anal organizing down to 2 calendars and 4 lists!  One of my calendars is work related, so I think I've pared down the monthly mania calendar-keeping as far as I can go.  After all, I do need some separation between work and my home life!

     The "listing" is an entirely different matter.  I keep a list of things I need to attend to in the immediate future, a list of things I'll do when I get "roundtoit", a list of things to follow up on that I've already taken care of, but needing not to be forgotten (like phone calls I'm waiting for a return call on), and finally a list shopping and/or household needs.  Whew!  I do keep a lot of lists to stay organized, but with the increased cognitive and memory problems of MS, I don't necessarily think my listing is THAT excessive...still anal, but not excessive!

     The problem surfaced today when I couldn't find my "lists"...I have no idea what I did with my little organizer notebook!  I usually keep things in specific places (because of this very reason) out of habit because I have found establishing a routine is very helpful...if I don't have to think about what I'm looking for, I can usually find it right where my brain has been trained to leave it.  Today has not been the case.

     I have trained myself soooo well in my list keeping...once I think to write something down or "list" it, I put it out of my mind and move on to the next thing.  After all, why clutter my brain with so many details when I can clutter paper to keep track of my life?!?  The problem is, I have no real recall of WHAT I write down on my lists until I see it again!

     Iwoke up this morning (in much cooler Western Washington weather...thank you for those who have been praying for my deliverance from hell!) knowing there were a few important things to do on my lists today...there were some things facing a deadline.  I went to my usual place where I keep my lists and could not find my organizer.  Consequently, I have torn up my home in search of my lists!  I simply can't recall what those DEADLINE issues are!!!  And I have no idea where I may have misplaced my lists.

     I finally have given up and decided to sit down and blog about it on the off chance "writing" about my lists will jog my memory and I might FIND my lists!  I never realized I'd be dead in the water without my organizer and now I am considering the idea of COPYING my original lists and placing the COPY somewhere else I might find it...but I suppose that would be TOO anal (people HAVE accused me of being anal-retentive in the past...go figure!).

     Someone once told me there were only two things in this life that were mandatory:  Death and Taxes.  I just hope neither one of those things were on my lists to do today!

Tuesday, June 27, 2006

Big Momma...A Story Of Survival...Sort Of

     Some of my friends claim I have a "green thumb".  Personally, I think my plants just feel sorry for me and grow out of kindness!  Big Momma is one of these empathetic plants.

     Ten years ago, I took off on a cross country move from Houston, TX, to Seattle, WA, accompanied by my bestest friend, Patty, and a car full of my most precious possessions, which included my house plants.  I knew better than to try to ship plants with the rest of my furniture because the moving van would be traveling over the Rocky Mountains and the conditions in the truck would certainly kill my beloved plants.  My car, on the other hand, would be temperature-controlled for humans and what I thought was the "best" option.

     We left Houston on a fairly warm March day (when is it NOT warm in Houston?!) and drove as far as Amarillo, TX.  We were so exhausted from the drive (Patty had surgery only the week before, but insisted on making the trip with me), by the time we got to the hotel, all we could do was stumble into the room with a suitcase and collapse on our beds.  Little did I realize, Amarillo weather is NOT the predictable heat belt of the south like Houston!

     When we awoke the next morning, we discovered a blanket of snow had fallen and the temperatures had dropped in the teens!  My beloved plants, which had remained in the back seat of my car, all but frozen to death in the chill.  Only a couple of hearty cactus remained alive and well.  Needless to say, I was devastated by my own stupidity.

     Five days later, when we arrived in Seattle, I unloaded the coffin of plants and set the wilted pots outside.  The small Jade plant I had been traveling with looked as though it had gone through a fire with it's freezer-burnt leaves piling up at the base of its pot...it didn't take a horticulture major for me to figure out it was dead.  I simply stacked the "coffin pots" in a corner of the back yard, thinking eventually I'd just buy new plants to refill them.

     A few months later I returned to the plant coffins to discover one, tiny leaf of the Jade plant had somehow taken root and had grown a new stem that was no more than an inch tall.  I was quite amazed to find this!  I remember thinking (perhaps even out loud) "Game On!", and picked up the little sign of life and took her inside the house.

     From that one, tiny leaf Big Momma evolved (that's her in the pictures).  She has grown into a thriving sight over the past ten years, surviving three moves to new homes (Jade plants are quite sensitive to being physically moved as well as light changes...particularly if they are knocked on their sides in transport...yes, this happened a few times in moving!), but most of all surviving ME!  She came back from the dead and has flourished in spite of my ignorance and sometimes blatant disregard for her needs.  She is a true survivor.

     I have an unusual relationship with my plants.  I name them and decide their "personalities" when I acquire them.  Often times I "acquire" them because I feel sorry for them in the store and will choose to take them home because they appear to have been neglected and/or dying.  I don't have kids or pets, so my plants fulfill this pseudo-role for me.  The thing that separates them from children and animals though, is their lack of true "need" of anything from me, other than a little water now and then and some light...if only children were this easy I might have considered parenthood!

     But my plants are like little people to me and I believe their lives parallel our human existence.  Big Momma is a fine case in point to discuss.  As I said, Big Momma is a SURVIVOR.  She has beaten the odds (AKA, my "best" intentions!) and, although showing signs of wear and tear, she continues on.  I have probably done nothing really to help Big Momma grow and mostly interfered with her own, innate process!  My interaction with her has certainly "influenced" her over the years, but I've done nothing that has changed her core or inner wisdom of surviving...I'm sort of like Multiple Sclerosis to Big Momma really!!!  I knocked her down, altered her growth process, bumped her around, and yet she's stronger now than ever...

     Those of us with MS are ALL survivors like Big Momma.  Some of us thought MS would kill us like the frost in Amarillo (and unfortunately, there have been those before us where MS DID take lives).  MS knocked us down to our core, yet somehow we found our "roots" and hung on.  We have wonderful periods of growth, then the MS (like me with Big Momma) decides it's time to "move" us around a bit, change our "lighting", knock a branch off, etc.  We adapt to these changes and continue to grow with sometimes "unique" shapes and forms...I believe just like Big Momma, it is this uniqueness that adds to our beauty.

     I've decided if Big Momma can survive me, I can surely survive MS and perhaps even do better than survival...I can continue to grow and add my own beauty to the world around me.

     I'm just sayin'...

Monday, June 26, 2006

Too Hot For Words...

     It's supposed to be record temperatures again here in Western Washington today.  I feel as hot and dry as my prickly cactus over there...

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

     I spent the weekend devising strategies to stay cool, which mostly meant I loitered in air conditioned establishments until I thought they began to notice I really wasn't buying anything!  I'm getting ready to go "loiter" at work now where I can expect the county to pay for my cooling needs...

     Unfortunately, this blog today is cut short by my level of cognitive impairment brought on by the heat.  That's right...hot weather makes me stupid!  Some of my friends and colleagues might argue they have noticed the same cognitive changes occurring even in cooler weather.  I'm too hot to argue with them at this point.  I have to conserve what energy and firing brain cells I have today so I can fulfill the needs of my employer...and, of course, suck up that FREE AIR CONDITIONING!

     Several of you have emailed or commented here with various cooling techniques you know of or have used...thank you for your comments!  Perhaps when the temperature drops enough to a tolerable level to sit and type for more than a few minutes, I will compile a list of ideas for this blog on tolerating the heat and MS.  Right now, I have to go throw the ice packs I've been wearing on my head back in the freezer...I've been accused of being a "hot head" before, but this is ridiculous!!!

Sunday, June 25, 2006

I'm In Hell...

     It's true...I'm in pure hell and not necessarily because of my own transgressions!  Seattle, WA, is experiencing record high temperatures today.  I think it's around 85 degrees right now and heading upward to 90. 

     Now to most of you in the rest of the world, you're probably wondering why I am complaining (especially you Texans, who hit the 90 degree mark a few months ago!).  It's simple really.  WE DON'T HAVE AIR C0NDITIONING HERE!!!  Well, at least not in our homes anyway.  Seattle's temperatures are generally so mild and, because we're located on Puget Sound, we usually get a nice breeze of some sort off the water...but not today, kids!  We're pushing 90 with a stagnant air alert.

     I do have my poor man's air conditioning running.  Hooter's Restaurant would call it a wet T-shirt contest...I call it "survival".  I've got three fans running, a soaked T-shirt on my back, two ice packs on my head, and I'm sipping an icy beverage.  Unfortunately, I'm still HOT!  Oh yes, I also have that cute, mini, battery-operated, personal "MSWATCH 5th Anniversary" fan humming around my neck...I cursed the darned piece of expensive advertising three years ago when MSWATCH mailed me their propaganda.  I'm starting to think they may really have had my best interest at heart!  Perhaps they understand my MS better than I do.

     I'm so looking forward to going to work tomorrow and not because I'm the dedicated public servant I'd like others to think I am.  Our office building is air conditioned!!!  I may even win some "brownie points" with the Big Boss by going in early and staying late...think she'll figure out my devious ways?!?

Takin' It On The Road...

 

 

 

 

 

     My friend Suzy, (here's her web page address over at ImagineBliss http://miss_suzy.typepad.com/my_weblog/ ) and I have decided to do a comedy tour about MS…mostly because we need the money!  But also because we’ve decided there’s just soooo much material available from our own lives that is way too funny not to share with the general public.

     MS really IS funny sometimes…to those of us who look diligently for the humor of it all.  We learn to laugh about changes and the peculiar course of the disease.  We either learn to laugh or face spending a lot of time crying.  We learn to “reframe” (a fancy word I learned in Psych 101) the disappointments into something more palatable and accepting to our psyches.  We learn to stumble gracefully and smile knowingly at ourselves looking up from the floor.  We learn to embrace our “gimpdom” with dignity and poise…as well as humility and humor.

     There’s something very healing and healthy about a good laugh.  Reader’s Digest has proclaimed this as truth for years with their column called, “Laughter Is The Best Medicine”, a page devoted to jokes and humorous stories in the magazine.  Scientists discovered a decade ago that laughter releases endorphins and provides us a natural “morphine” in our bodies…and, this natural morphine is free without side effects!

     It's so wonderful to have such a good friend like Suzy who also CONVENIENTLY has Multiple Sclerosis.  I mean, not that I wish this disease on anyone, particularly my friends!  But if we have to have the disease, it's just an added bonus to know someone ELSE who's walking a similar path, who understands the process, and can readily share in the adventure!...and laugh, and giggle, and SAY all those politically incorrect things our "other" non-MS-effected friends might feel uncomfortable hearing, especially the gimp jokes. 

     Suzy and I will let you know our tour dates and what cities we’ll be in once we’ve written our act.  I know the show won’t exactly be stand up comedy…we’re both too tired to stand very long!  And we’ll probably both get the giggles and be unable to deliver any punch lines…but we’re bound to have an adventure on the road! 

Saturday, June 24, 2006

Toto...We're Not In Kansas Anymore!

     UPS lost my house this week...actually, I'm not sure if they misplaced it or I did.  I certainly don't remember moving the building, but somehow they believe I did!

     During my most recent steroid craze, I did the unthinkable and got on line to "shop"...I ordered "things"...things I thought I "needed"...I had these things shipped to my house.  Everything arrived on schedule, except one package.  I got a postcard in the mail from the BROWN STORE requesting an "address correction" or they were going to return my final package back to the sending company.  They gave me two days to either drive across town and pick up my package or call them, so I chose to call on Friday.

     Yolanda, the somewhat curt UPS Customer Assistant, tried to help me on the phone in sorting out why my package was not delivered as planned.  It turned out sounding more like a skit of "Who's On First" by the Three Stooges.  The phone conversation went something like this:

Yolanda:  UPS.  Can I help you?

Silly Me:  Hi.  I received a postcard in the mail two days ago from UPS telling me you needed an address correction to deliver my package.  The address provided IS my correct address.

Yolanda:  Tracking number?

Silly Me:  Excuse me?  What are you asking me?

Yolanda:  Tracking number.  On the postcard.  What's your tracking number.

Silly Me: I'm sorry.  There's no such number listed on this card (turning it over and scanning both sides for numbers).  There's only a PTV# and a long number starting with the letter Z on here, butnothing that says "tracking number" beside it.

Yolanda:  (Heavy sigh)  What's your address then?

Silly Me:  It's blaty blah blaty blah in Seattle.

Yolanda:  And your corrected address?

Silly Me:  No that IS my correct address.  The one that's listed on the card and the one where this postcard came to.  Blaty blah blaty blah.  That's the correct address.

Yolanda:  I need your corrected address (she says with a "snip" of impatience in her voice)

Silly Me:  I'm telling you, that IS my correct address.

Yolanda:  Just a minute.  (I can hear snapping on a keyboard)  We need your CORRECTED address ma'am.  (Yolanda is clearly quite annoyed with me at this point)

Silly Me:  And I'm telling you that IS my correct, liveable address!  (And I am annoyed with Yolanda at this point, too)  UPS delivered a package earlier this week to this very address and now you can't find it?  I don't understand this.  You found it on Monday, but couldn't find the house on Tuesday.  The house didn't move and neither did I.  It's the same address for both days.  AND...UPS sent me a postcard through general mail to THIS address and it arrived here just fine.  Why would you send a postcard to an address you thought wasn't valid to tell me you NEEDED a valid address?  This really doesn't make much sense to me.  (I'm no longer hiding my annoyance and wearing it on my sleeve)

Yolanda:  (Long, deliberate pause)  Without a corrected address, you're going to HAVE to go to the UPS Center address listed on the card and pick up your package, ma'am.  (Yolanda says this very slowly and methodically...as if I'm brain injured)

Silly Me:  OK.  Fine.  You win.  I'll just go today and pick it up then.

Yolanda:  What time will you be there?

Silly Me:  Excuse me?  Why is that important?

Yolanda:  (Now beyond annoyed with me)  Ma'am...(she drags out the word to two or three syllables)  What time will you be there?  We DO close, you know.

Silly Me:  Your card says the Center is open until 8:00PM tonight, correct?

Yolanda:  Yes, and what time will you be there?

Silly Me:  Ahhh...I'll be there sometime before 8:00PM then.  Will that work?

Yolanda:  Well, yes.  But we close at 8:00PM.

Silly Me:  Fine.  I'll be there sometime between 6:30PM and 8:00PM.  Will THAT work?

Yolanda:  (Now not speaking without long pauses)  Yes...as long as you're there BEFORE 8:00PM.  (Silence)  If you'd just provide your corrected address, ma'am, we could still deliver your package to you.

Silly Me:  Thank you, Yolanda.  You've been more than helpful.

                                  *********CLICK***********

            

Thursday, June 22, 2006

Another Day, Another Dollar...Lazarus Returns To Work

     That's me in the photo sunning myself in the late afternoon today after work.  I needed to lie down as I felt exhausted!

     Yes, it is true...Lazarus came back from the dead today and returned to work.  It was time.  I was starting to get bedsores.  I was bored.  And most importantly, I actually started FEELING better!  Can I hear an "Amen" from the crowd!?!

     I walked in the office today and was greeted by my favorite "peeps" in the entire world.  Saint EB was there to cheer me onward...she's always such a mental boost.  Then, I strolled back to my desk to find a most hilarious placard hanging on my cubicle wall.  It would have made the nose hairs curl in the Pope because of its complete and utter political incorrectness.  It was a sign poking fun at my recent "gimpdom"...I knew when I saw this I was home!

     I've said it before (and gonna say it again obviously)...I have some of the most wonderful people I call coworkers and friends.  Some may say, "But they're awful.  They make fun of you.  They mock your disability.  They're insensitive."  These are the very qualities I LOVE in them!  No one pulls any punches when it comes to my Multiple Sclerosis...I would never want them to.  It is the dark, sarcastic humor that bonds us together and helps me see beyond the pain or discomfort I am experiencing.  One might even say they boost my immune system with these comments and quips!

     I AM fatigued from my 9 1/2 hour day (we work unusual hours), but feeling so very fortunate I have a job to return to AND the privilege of working with the people I do...they truly lift my spirits and make each day something to look forward to.

     Yes, I am crossing my fingers that Lazarus is back among the living again...

Wednesday, June 21, 2006

A Season Ends, A New Season Begins...

     I've been sitting quietly meditating/thinking early this morning about the impact and meaning of today's calendar date:  The first day of summer, summer solstice, Midsummer's Night...whatever you choose to call it. 

     Today is considered the longest daylight hour of the year in the Northern Hemisphere.  In Seattle, WA, where I live, daylight began with the rising sun at 5:11 a.m. and will officially set at 9:10 p.m., giving us pasty-white, northern dwellers approximately 15 hours and 59 minutes of sun...17 hours and 20minutes of actually daylight.  We live for this day in Western Washington.

     Most people commonly think of the first day of summer or "summer solstice" as the beginning of a period of fun and frolicking in the heat and sun of the season.  It is a time to relax by the water, have parties on our decks, and enjoy the fruits of the season.

     But in the ancient earth traditions and religions, summer solstice is actually the beginning of the WANING of the sun and movement from the season of fertility to the season of harvest.  After the peak of the sun on June 21st (date varies each year, but generally always falls around this time), daylight hours slowly and methodically begin to dwindle.  Summer solstice is a time to reflect upon the growth of the season:  the seeds that were planted in the earth and the seeds planted in our souls.  It is a time of cleansing and renewal.

     I am reminded today many "seeds" have been planted in the earlier part of this year's Wheel of Life for me.  Some of those seeds have been nurtured and carefully tended, while others were not.  Some of my "seeds" were choked out by lack of water, sun, and other noxious weeds.  Summer season is a time for me to focus on the growth of my life that really matters:  the fruits of my soul.

     My spring season of Multiple Sclerosis felt as if nothing good had been planted and nothing helpful could grow.  My garden field seemed like too rough a terrain and climate for anything to be able to push outward toward the light.  It has been a very difficult season.

     With the summer season upon me, it is time now to do some weeding and watering.  It is time now to carefully protect the young stems of knowledge and flowers of change I have sprouted.  It is time now to simply let the sun do what it has done for centuries:  bring light and warmth to the season.

     I believe the chill of winter has passed and the torrential rains of spring have subsided.  I am ready to move into this new season of my life...I am ready to emerge on the other side of the darkness of MS and move into the sunlight. 

Tuesday, June 20, 2006

I'm So Dizzy, My Head Is Spinnin'...la la la

     Someone asked me yesterday what the difference was between having vertigo and feeling dizzy?  I attempted to explain my “understanding” of these two terms and quickly realized I didn’t have much knowledge for the basis of my discussion…which caused me to feel “dizzy”!  I was aware I understood for ME what the difference in terminology meant.  After all, I’ve had both dizziness AND vertigo from Multiple Sclerosis in the past and both conditions are pretty distinguishable…suffice it to say, you don’t ever WANT to have vertigo.  Just trust me on this one.

     So, in my state of “dizziness”, I got online to do a bit of research and find the correct medical terminology to explain and differentiate between feeling dizzy and having vertigo.  To that “someone” yesterday who posed this question, this blog’s for you…YOU know who you are!

     The word "vertigo" comes from the Latin "vertere", to turn + the suffix "-igo", a condition = a condition of turning about. Vertigo is medically distinct from dizziness, lightheadedness, and unsteadiness.  Dizziness is generally thought to be a symptom of something else, while vertigo is an actual state or possible secondary diagnosis.

     There are four, distinct states of “dizzy”…one of which IS vertigo.  So essentially, you can have both dizziness and vertigo at the same time, but may not necessarily always FEEL dizzy WITH vertigo (this is getting clearer by the moment, isn’t it?!?).  Those four distinct states are:

 

LIGHTHEADEDNESS:  a vague sensation of floating or wooziness.

 

PRESYNCOPE:  a more extreme form of lightheadedness.  It may or may not precede actual syncope (fancy term for “fainting”) and may be accompanied by tachycardia (rapid heart rate), palpitations (the sensation your heart is skipping beats or misfiring), or diaphoresis (excessive sweating).

 

DYSEQUILIBRIUM:  a sensation of unsteadiness.

 

VERTIGO:  a sensation or false sensation of movement, often described as spinning, twisting, rocking, tilting, or turning.

 

     When your medical practitioner is trying to figure out if you are dizzy or experiencing vertigo, they may ask questions like, “When you have dizzy spells, do you feel light-headed or do you see the world spin around you?”  If you answer “yes” to the spinning part, you may have vertigo.  Which by the way, your doctor may try to impress you by pronouncing it “ver-tie-go” versus the lay usage pronunciation, “ver-tee-go”.  They ARE always trying to impress us!

     However you choose to pronounce your tomAYtoes or ToMatoes, vertigo just plain sucks as does dizziness!  Dizziness is the third most common symptom presented for medical consultation, falling only behind in line to chest pain and fatigue.  The symptoms of dizziness may be episodic or constant and often commonly make it difficult to walk.  Dizziness can last for seconds to months at a time.  Dizziness can be due to all sorts of things, such as low blood sugar, abnormal blood pressure, side effects or responses to medications, anemia, narrowing of the arteries, migraines, anxiety, and inner ear problems…the list of causes is quite extensive.

     The causes of actual vertigo are a bitmore narrowed down to disorders of the central nervous system, the eyes or the inner ear.  It might be important here to “attempt” to explain how our sense of balance/equilibrium works…I say attempt, because I’m really just guessing here and I have no clue!  But I do have some pretty cool cut and paste information, so here goes:

How does the body maintain its equilibrium?
Dizziness, vertigo, and motion sickness all relate to the sense of balance and equilibrium. Researchers in space and aeronautical medicine call this sense spatial orientation, because it tells the brain where the body is "in space:" what direction it is pointing, what direction it is moving, and if it is turning or standing still.
Your sense of balance is maintained by a complex interaction of the following parts of the nervous system:

The inner ears (also called the labyrinth), which monitor the directions of motion, such as turning, or forward-backward, side-to-side, and up-and-down motions.

The eyes, which monitor where the body is in space (i.e. upside down, rightside up, etc.) and also directions of motion.

The skin pressure receptors such as in the joints and spine, which tell what part of the body is down and touching the ground.

The muscle and joint sensory receptors, which tell what parts of the body are moving.

The central nervous system (the brain and spinal cord), which processes all the bits of information from the four other systems to make some coordinated sense out of it all.


The symptoms of motion sickness and dizziness appear when the central nervous system receives conflicting messages from the other four systems. For example, suppose you are riding through a storm, and your airplane is being tossed about by air turbulence. But your eyes do not detect all this motion because all you see is the inside of the airplane. Then your brain receives messages that do not match with each other. You might become "air sick." Or, to use a true medical condition as an example, suppose you suffer inner ear damage on only one side from a head injury or an infection. The damaged inner ear does not send the same signals as the healthy ear. This gives conflicting signals to the brain about the sensation of rotation, and you could suffer a sense of spinning, vertigo, and nausea.

 

     Now you have to admit, that’s some mighty cool scientific information…but perhaps way more than you wanted or needed to know! 

     So besides knowing “Vertigo” was a 1958 Alfred Hitchcock movie starring Jimmy Stewart and Kim Novak, what else have we learned here (specifically YOU, “someone”, who asked me this question in the first place??)?  VERTIGO IS THE ILLUSION OF MOVEMENT and unfortunately it IS often a sign or symptom of Multiple Sclerosis.

     One of the drugs sometimes given (and also to test for true vertigo) is Valium.  For some reason, this benzodiazapine lessens the spinning…I won’t go into detailed explanation about THAT.  So just know if your medical practitioner suggests taking Valium for your vertigo, it’s not necessarily because they think you’re crazy (although don’t jump to rule that out prematurely!) 

     Most often Mser’s vertigo is caused because of …drum role, please…you guessed it….BRAIN DAMAGE!  And often that damage is found in the cerebellum (the ruler of balance and equilibrium in the brain)…that back-sided, chunky part of the brain, which sits just above the back of your neck (inside your skull, of course!) and is friends with your brain stem (running out of technical terms here).

     I’ve got a lesion in my cerebellum.  I’ve had severe vertigo in the past.  Does this make me a dizzy blonde?  Perhaps.  Am I dizzy all the time?  Nope.  After my relapse last winter, which symptomatically consisted primarily of debilitating vertigo, I have been left with the inability to look up above my head.  I don’t get dizzy or have regular bouts of spinning unless I look above my head.  This does make star-gazing or peering at jets a more challenging task, but not unheard of.  I simply have to brace my balance and/or change my body alignment to look up.

    Soooo…I currently suffer from dizziness, most likely brought on by steroid use.  Luckily the doctor at the emergency room took pity upon me and loaded me up with a HIGHLY effective drug called, “Zofran”…it’s a drug used primarily for nausea treatment with cancer patients.  It’s about $300.00 a bottle for 10 (thank goodness for good insurance), but I highly recommend it if you are suffering that gut-wrenching nausea from feeling dizzy…and I DON’T routinely recommend pharmaceuticals because I hate the drug company bastards! 

     Just lessening the nausea caused by my dizziness has lifted my spirits greatly these past two days!  So much so, I am now able to return to the computer and bang out silly blogs again without feeling the need to puke…bet you wish by now I still wanted to hurl?!?

     I just wish now I could get that darned 1969 Tommy Roe song out of my head…you know the one… “I’m so dizzy, my head is spinnin’.  Like a whirlpool, it never ends.  And it’s you, girl, makin’ it spin.  You’re making me dizzy.”  That song’s enough to make me wanna puke again…

 

Monday, June 19, 2006

CHANGE...

     The “death bird” came to visit me this morning, quite early I might add.  The crow in the treetop began cawing loudly outside my window, waking me from an uneasy sleep.  The sun had not even begun to peek over the horizon at 4:00AM, when I slipped on a jacket and went outside to sit in my back yard and ponder this past week’s events.  My, what a week it has been…but then again, why didn’t I foresee this?

     The crow and I sat outside for nearly 45 minutes together…it did not move from its branch, sitting above me and guarding my stoic thoughts, as I sat feeling somewhat lifeless and self-absorbed.

     It has always been interesting to me how important symbology will surface if I just open my eyes and “see” the messages around me.  The crow has always been one of those powerful symbolisms since I was a child.  As a matter of fact, when my current relapse began in March of this year, I symbolically placed a black and white photo of a crow at my front door.  It felt as if “death” and transformation were occurring in my home and I needed to be reminded this was an “OK” thing…not literal death, of course, but the process of ideas about my health “dying”.  I think the crow was trying to bring me a similar message again today…I just have to figure out what THAT message means now.

     I spent most of yesterday afternoon and evening in the emergency room…one of the places I despise going even more than the thought of a colonoscopy.  My five day course of IV steroids did not and has not gone well.  I became quite ill in the days following my last dose on Thursday of last week (and still feel ill)…you may have read previous blog entries eluding to this.  By Sunday afternoon, I could not tolerate the discomfort any longer, so I bowed my head and went to the ER…I no longer could discern for myself what I needed or what was the “best” thing to do for my health…something I don’t admit easily.

     After 5 ½ hours of tests, fluids, medications, etc., I was finally released home, knowing no more of what was right or wrong with me than when I entered the ER doors.  Perhaps my symptoms are simply MS related, perhaps they are caused by sudden steroid withdrawal, perhaps I have an infection, etc.  These were all the various “options” the emergency room doctor gave me to ponder in my long wait.

     Extreme dizziness, nausea, headache, facial numbness, cramping and numbness in my calves, weakness in my left leg, nystagmus, an elevated WBC (thus the thought of infection somewhere), diarrhea, and severe fatigue…all symptoms that could be ANYTHING really and none of which would be considered life-threatening.  But all symptoms that are causing me to lose faith I will ever feel better again.

     The good doctor wanted to run more tests.  Irefused.  I’ve had enough “testing” done and enough “treatment” done to last a lifetime.  I have said this before and I’ll say it again, “It is not the Multiple Sclerosis I worry will kill me, but the treatment of it.”  I tend to believe that is what is happening to me now as my body and mind struggle to find a foothold of balance in this spinning cycle of MS.

     I think the crow was/is trying to tell me a very important message this morning about “letting go” and fear and transformation.  I have no control over this disease, it’s symptoms, the discomfort, the cause.  My pride, my health, my ideology and self-concept are experiencing a funeral of sorts and I am at a loss.  Perhaps if I cease my desperate clinging to what once was, I will not be so fatigued and feeling sickly.

     That’s quite strange…as I finished writing that last sentence I am aware I no longer hear the crow cawing outside…message received loud and clear.

Saturday, June 17, 2006

I'll Give You Something To Cry About...

     My mother used to say that title line to me all the time whenever she felt my fits or crying spells as a child were unwarranted or feigning for attention.  It’s funny how everyone reacts so viscerally to tears or laughter.  It is almost as if these two expressions of emotion are somehow “hot wired” into our systems as either dualistically “good or bad”, “weakness or strength”, or “appropriate or inappropriate”.  Let’s face it…we all got in trouble in school, too, if we broke out in uncontrollable laughter!

     We spend a great majority of our formative years learning to “control” our emotions.  Controlling emotions somehow equates to mastery over them, leading us to believe emotions are a force to be reckoned with…something that will make or break us in any given situation.  Certainly I suppose this could be true in poker and politics!

     But current research suggests our emotions and the expression of them are far more complex than we, as higher functioning human beings, ever imagined.  Our emotions truly ARE “hot wired” into our brains and affect every aspect of our daily lives, from our circulatory system to our immune system.  Controlling our emotions can be a daunting task and even an unhealthy one in some circumstances.  UNDERSTANDING our emotional responses might serve us better in the long run for positive health.

     No one understands the effect our emotions have on us and those around us better than people with brain damage…and that includes Multiple Sclerosis, folks!  It IS, after all, a disease of the central nervous system that creates lesions/interrupts neuron transmissions in the brain and spinal cord.  It is believed people with certain types of brain damage, mainly to the prefrontal cortex of the brain where emotions are controlled/expressed, lack an ability to “control” their emotions because of this brain damage.  In other words, we cry and laugh at times for no real apparent reason…and you just thought you were going crazy, didn’t you???

     There are a lot of fancy terms out there for this lovely part of the disease process of MS.  You will hear it called “Labile Affect”, referring to the pathological expression of laughter, crying, or smiling.  Some may call it “emotional lability”, “emotional incontinence”, or it’s clinically appropriate term:  Pseudobulbar Affect.  Whatever you choose to call it, understand you can’t help it and probably can’t control it…it’s brain damage kids!  I like to call mine my “Mood Ass Moments”.

     Pseudobulbar Affect is no laughing matter, however.  It can be very frustrating and unfortunately is believed to affect as many as 10% to 50% of those of us with Multiple Sclerosis.  It can lead to lengthy explanations, embarrassing moments, coping problems at work, and social phobias.  It’s just not “pretty”.

     Currently, the only treatment available (and I stretch to use the word “treatment”) is the use of anti-depressants in low to moderate doses.  The drug Neurodex is being studied in open-label trials in the USA and appears to be promising, but it is far from meeting FDA approval.  My understanding is this drug’s primary ingredient is dextromethorphan, a cough suppressant used in over-the-counter cold remedies…at least it USED to be until the Meth labs began cooking it down and selling it on the streets!  Neurodex is a combination of dextromethorphan with an enzyme inhibitor, quinidine, which seems to help sustain levels of “dex” in the body. 

     But once again, we are asked to rely on the pharmaceutical companies to sustain our quality of life, which is something I for one resent, yet acknowledge and feel trapped by the need.

     So how do we cope with Pseudobulbar Affect with or without pharmacology?  Unfortunately, I’ve got no easy answer.  I never do.  I can only offer suggestions that “might” help you based on my own experience.

     First and foremost I had to recognize I wasn’t going (or had gone) crazy.  Nor was I profoundly depressed, suffering from bipolar disorder, or any other convenient and easily medicated label.  I have brain damage.  It’s a simple fact.  I can’t control it.  It’s not my fault.  I don’t LIKE it, but there’s not a whole hell of a lot I can do to reverse the lesions in my brain, so I might as well work on understanding and accepting the process…of course, digging my heels in all the way and kicking and screaming (I am far from “self-actualized”!).

     Second, if it’s not harming anyone and especially not ME, why do I care?  So I might make someone else uncomfortable?  So what?  We’re all “big kids” now and no one is going to throw me out of class because I am crying or laughing uncontrollably.  Besides, I can always throw in the MS Card and embarrass their lack of understanding, trumping my own embarrassment!  People HATE to be seen as politically incorrect when it comes to gimps (Oops!  Was that a politically incorrect term?!?)  I can’t HELP it, so sue me.  If I can’t stop, I can choose to leave the situation, excuse myself, or any number of things to do damage control.  But I can’t stop it until my brain stops it.  It’s just a biochemical expression folks…perhaps incongruent to the situation, but nothing more than an emotion.

     Third, fatigue seems to add to my Pseudobulbar Affect.  The more tired I am, the more likely I am to be susceptible to emotional misfiring.  This was true before I knew I had brain damage!  Recharging those emotional batteries is a must, whether this means taking some quiet time for yourself or even napping.  The world always “seems” clearer to me when I amwell rested.  And it is true…an agitated nervous system makes an agitated person!  Do what soothes you.

     And finally, you may want to try a drug.  I take Wellbutrin, an anti-depressant, for several reasons.  It increases my mental clarity in the morning, decreases my fatigue, keeps me from becoming “depressed”, and may even be helping with my affect regulation caused by the MS…who really knows?  It really doesn’t matter as long as I believe it is helping me and I do.

     I wonder if my mother would believe me today if I could tell her, “Hey Mom?  I really DO have something to cry about now.”  But I suppose she already knows that in spirit, wherever she is…and she’s probably laughing uncontrollably at the silliness of her statement!

 

For a more detailed summary of this topic, I recommend the following National MS Society link:

 

www.nationalmssociety.org/pdf/forpros/Pseudobulbar.pdf

 

Friday, June 16, 2006

IT WAS IN THE STARS...

     I’m a Leo…most everyone is familiar with this astrological sign.  We’re the outspoken, stage-hogging, prideful, loyal, and dramatic ones.  This is a copy of my Leo Horoscope for today (Ignore the “Angelina Beavermartin” reference…it’s my stage name! LOL):

 

Horoscope for: Friday, June 16, 2006
Yesterday | TODAY | Tomorrow

Angelina Beavermartin,
Self-examination may reveal signs of unexpressed anger, although you probably will do your best to avoid confronting these negative feelings today. The emotions can be quite subtle, for you could easily disguise the feelings as something else. However, if you harbor unresolved tensions now, they can resurface as someone else trying to manipulate you. Express your hurt with kindness to avoid unnecessary control games.

     I bring you my daily horoscope as a means of explaining why I feel I must share with you the disastrous events of my day yesterday…”To express my hurt with kindness to avoid unnecessary control games”…yeah, right!

     I’m not one to generally go into great detail about my personal frustrations with the medical establishment for two reasons:  1.  Some of my experience is best left private, and 2.  I WORK in the medical field and would never want to read in someone else’s blog how horribly THEY might have been mistreated by ME!  It’s a matter of balance.

     But yesterday’s events just topped my cake, so to speak!  I’ll provide a smidgen of background to catch those of you up to speed who are just joining in:  I have Multiple Sclerosis (duh!) and it is progressing on scans rather rapidly, which has resulted in my neurologist attempting to treat it aggressively with monthly infusions of IV Solumedrol while we await the return of TYSABRI to the market in July or August.  I generally don’t “do” well on steroids, thus posing a complicated “event” for me medically and psychiatrically, resulting in multiple treatments for those complications.  Nuff said on that…yesterday was one of those “complications” days.

     On Tuesday of this week, I awoke feeling extremely bad with muscle weakness, something I refer to as “log legs” (my legs feel too heavy to move), severe diarrhea, a profound tightening in my chest, and a severe headache.  This followed a weekend three-day course of Solumedrol 1000mg IV and was quite unusual.  Being the diligent patient I am, I emailed Dr. She Who Will Not Be Named to consult.  She felt I needed MORE steroids and scheduled me for two more IV infusions.

     By Wednesday, I could hardly move with effort and personally wanted to stop breathing because my chest was so tight.  Everything hurt.  My dear friends schlepped me to my infusion, stayed with me through the event, and got me home, which was NO minor task (sending a thank you not to heaven right now for their records).  A few hours after my infusion and actually feeling a bit improved, Dr. She Who Will Not Be Named emailed to say my potassium and calcium levels had dropped significantly and I needed to start oral supplements.  This has happened to me before with steroids and personally what I had suspected was happening on Tuesday…but, hey…I’m NOT the neurologist, so I played along.  I DID email her back, requesting a bit more “data” on the matter and a few suggestions because I honestly felt she was missing something…mainly, these NEW SYMPTOMS WERE NOT MS and I suspected they were caused by an electrolyte imbalance!  This was her email response:

 

 Good point – your K today was 2.8; 3.4 on 6/11, 3.2 on 6/10 and 3.6 on 6/9, so I think your body just didn’t like me hitting you with another course of solumedrol so it dropped your K today. Also your calcium was 8.3 so you should chew on some tums too.

 

     A potassium level of 2.8?  Even I know that is far too low (normal range is roughly 3.5 – 5.0…people can have heart attacks at 2.5!), so I started to get a bit “concerned”.  Concerned for me means I begin to switch modes from patient to healthcare provider and figure out for myself what best course of action should be taken.  Hypokalemia (low potassium level) can cause a plethora of muscular symptoms because potassium regulates nerve conduction…thus the potential for cardiac symptoms if the level falls too low.  The worst symptom for me was the potential of confusion and disorientation because I live alone and would need to be able to call for help if things took a drastic turn.  I poked the K+ pills down my throat immediately and chewed the TUMS with vigor.

     By 3:00am Thursday morning, I awoke with left-sided cramping in my face, both calves tight as steel cables, the headache pounding, and what I was certain was indigestion mimicking chest pain (Potassium supplements cause severe heart burn and I had a normal pulse without palpitations, no sweating, and no palpated arrhythmias …something to watch for if you “think” you might be having a heart attack).  Time to take matters into my own hands and start TELLING Dr. She Who Will Not Be Named what I felt I needed and wanted.  I felt too ill to simply “play along” anymore so I fired off another email:

 

4:00AM and awake from cramps in my calves and most likely steroid insomnia, too...also now have unusual mild cramping in left side of my face w/ increased muscle fatigue and headache.  Still lucid, but irritable...Perhaps chronic diarrhea and diuretic are depleting potassium too much w/ steroids (taking Tums and Klor-Con orally)?  Unreasonable to throw on a "banana bag" today w/ Solumedrol just in case?...Supposed to be in the Ambulatory Treatment Center at 3:00PM for infusion.  I feel very unwell, but NO ER suggestion please...unknown doctors scare me...you, I tolerate.

 

     I needed IV potassium.  I was certain.  And I didn’t want to go the time and expense of an ER to get it infused.  That seemed irrational when it could simply be done at the infusion center.  Unfortunately, I did not anticipate the out of office auto-reply return I got immediately from Dr. She Who Will Not Be Named, informing me she was now officially on vacation until 7/03/06 and to route concerns to her office assistants!  Drat and double drat!  I would be forced to “play along again”!

     I forwarded my original email to Dr. SWWNBN office assistant.  It was the best I could do at 4:00am and hope for a 9:00am response.  By 10:30am, I realized that response was not coming and my symptoms were worsening.  I called the next best person I could think to help me:  Sandi, the wonderful infusion nurse at the Center.

     Sandi instructed me to CALL the neurologist’s office because “she has to have someone covering for her”, and told me she would wait for their contact and call me back with instructions.  So, I did as I was told.

     After an unusual amount of time on hold (Dr. SWWNBN office has always been very responsive and precise, which is why I have felt comfortable there), a receptionist came back on the line and gave me another doctor’s name and number to call who was “allegedly” covering for my neurologist.  I hung up the phone and immediately dialed.

     This call lasted for over 10 minutes on hold, never reaching a live person, so I finally had to give up and leave a detailed message for a call back and what I needed.  Speaking coherently was becoming difficult as my frustrations mounted and the symptoms of discomfort were wearing me down.  I called my friend, Saint “EB”, and begged a ride from her on her day off to the infusion center at 2:30pm…I didn’t have the strength to get myself there, let alone even stand in the shower to bathe.  Saint “EB” arrived to rescue me (and entertain me) and plowed up the hill to the hospital.

     On the way to the infusion center, my cell phone rang.  It was the covering neurologist’s office calling me back to make me an appointment.  I explained three times politely I did not need an appointment, but a telephone consultation with the doctor instead.  The woman on the phone finally told me, “Please bear with me.  This is only my 5th day here”…I shoulda known…besides the fact the original message said this particular doctor was a neurological ophthalmologist…I didn’t need an EYE consultation!

     I hung up the phone deciding my fate would have to lay in the hands of competent Sandi, the infusion nurse.  She’d get me an order for IV potassium.  She knew the “system”.  She is a NURSE after all!

     Sandi took one visual look at me when I arrived and told me, “I’m not infusing you with another dose of steroid until I talk to a doctor.  You look like hell.”  She was right.  I DID look and feel like hell and needed someone to assist me.

     I now have to fast forward through this next part of my day…it only got worse!  Sandi spent TWO hours trying to reach ANY physician to get orders for me to hang a “banana bag” (IV potassium).  She never could reach anyone.  No one claimed to be covering for Dr. She Who Will Not Be Named.  No one in the hospital would take responsibility for my care.  Sandi did get stat labs on me (that was already preordered as part of the Solumedrol treatment, so she could at least do this without having to consult!).  After well over an hour, my potassium level came back at 3.0…slightly up from yesterday, but still too low.  Sandi and I began to strategize on what to do.

     I DID feel slightly better after the infusion the day before.  This was a plus.  But another infusion might only lower my potassium even more.  I needed IV potassium WITH the Solumedrol, but no one could be found to order it.  We decided to go ahead with the Solumedrol and see if the ER physicians downstairs would be willing to “consult” by phone without makingme check in there, wasting time and more money just to get an infusion I WAS ALREADY HOOKED UP TO UPSTAIRS, minus the IV potassium.

     Then Sandi got the idea to call my primary care physician, who is located at another hospital to consult.  Perhaps if she consulted with the ER doctors (she doesn’t have privileges where I go for my infusions to give orders herself) they might be willing to give me the potassium. 

     My “primary care physician” is not an MD…she’s a Nurse Practitioner and I respect her dearly.  Frankly, I would ONLY see nurses if the patriarchal medical establishment would just let them practice in peace!  ARNP, Patty, called the infusion center immediately…she’s just responsive that way (as “they” all should be!).  She consulted with Sandi and then with me.  She agreed I needed more potassium.  We worked out a “game plan” to mega dose the oral potassium and redraw the level via HER office, and if needed, I could go there for an infusion SHE could order.  We discussed my symptoms and what to watch for in the next few days.  She told me what foods to eat (always prefacing with, “I know you probably already know this, but I have to tell you”…it’s what I like about her…mutual respect).  She consulted about my diuretic and what to do about the blood pressure medications as my kidneys spill out the potassium.

     FOUR hours later, I made it safely back home and collapsed on my couch, feeling slightly improved from the steroid “high”, and poking in mega doses of potassium and Tums after filling my ravenous steroid belly with food.

 

     So, is there a lesson to be learned here?  Probably not and nothing I don’t already know.  Trust myself, listen to my “gut”, be kind to my loving friends because I will ALWAYS need them, let go of expectations, and remember to always say “thank you” to anyone who reaches out to help.

     Thus ends my “expressing my hurt with kindness to avoid unnecessary control games”…just as my horoscope predicted!

Thursday, June 15, 2006

Poetry Break...

The Diagnosis

 

 

I feel time

Squeezing me,

Like a vice

Around my soul.

There is so much

I want to see

And taste

And be.

It is hard to be here

In this space of uncertainty

When I want to be there.

 

I feel the days,

The hours,

The seconds

Slip through my hands

Like tiny grains

Of sand

And I cannot possibly

Hold them all

And exam each one

With the care

And scrutiny

They deserve.

It is so difficult to be

In the moment

When the distance

Feels so close.

 

I am saddened

By time's rules.

I feel cheated

My clock wasn't given

Proper set

To play

Life's game

In ordinary span.

 

What little time

I have left,

I must make conscious effort

To play full out.

I must hold what I can

Precious

And dear to my heart.

 

I will play

By my  own rules

Until my clock

Stops.