I Don't Do Stupid Well...

     I admit it.  I am losing brain cells.  I have lesions and holes in my brain.  Yes, I have MS.  But I just don't do stupid very well at all!

     I don't know if it is middle-aged brain or MS brain causing my most recent "brain farts", but these blips on my cognitive screen have become most annoying.  Today, I was in an important meeting at work and the brain farts began with no warning.  I was trying to speak about an important issue and I experienced severe word finding difficulty.  Being someone who always has a ready comment (even if it's  unsolicited!), this was quite embarrassing.  I struggled several times to recall and say very common words and concepts and I simply couldn't.  "Stupid" had set in and I was spellbound by it.

     I can adapt and change quite easily to the many curve balls MS has been throwing at me lately, but "stupid" is just not one I know how to swing at.  I'm pretty sure I struck out today.  My coworkers were their usual supportive selves, but I still felt waves of embarrassment and frustration.

     I suppose I should qualify some of my day by saying I had to work the night before until midnight and return to work at 8:00AM today for the dreaded "staff meeting".  I WAS tired.  I WAS bored in the meeting.  My mind was focused on what I was going to have for lunch by 10:00 o'clock.  Maybe "stupid" crept in because of these things.

     Whatever it's cause, it was most annoying.  I think the hardest changes I deal with in my struggles with Multiple Sclerosis are shifting my thinking and my self-concept to accommodate the many "surprises" MS brings me.  Cognitive changes are sort of my last area I am able to find acceptance in for myself...I loath the idea my mental clarity is failing me.  I despise the notion my average intelligence brain is now performing with less and less capability.  I can accept the outward physical changes such as gait problems, numbness, pain, etc., but the last area I consider "mine" is my thinking and my speech.  All I can say is, thank goodness MS has not robbed me of my sense of humor!  If THAT goes, I'm screwed!

     I actually just got home from work again after my very long 16 hour day.  I forgot I had taken the bus into town at the wee-hour-crack-of-dawn this morning and couldn't find my car in the parking garage.  I panicked thinking it had been stolen only to later realize it was never there in the first place.  My coworkers and I had a good laugh over this one, too, when I figured out my dilemma...I am becoming the office Brain Fart Mascot...perhaps I'll have T-shirts made with my title and picture on them to avoid confusion.  I am experiencing enough of it myself anyway...confusion, that is!

My Neurologist Tells Me My Head Lit Up Like A Christmas Tree...

     She says to me, "You've got active disease occurring", and I say, "Prove it".

     She shows me the MRIs and says, "Look here, here, and here.  Oh and here, here, and here."

     I make a joke about having a lot of brain tissue I'm not using at the moment, so perhaps all of the damage that is occurring doesn't really matter much...after all, I can still walk, talk, and pee on my own.

     She takes me back into the exam room and starts talking "options", mentioning Novantrone, Steroids, etc.  I'm no dummy because I know Novantrone is used to treat aggressive MS...my eyes glaze over like a toad shutting it's inner lid.  I don't hear too much after that, but I know I continue to talk and defend my faulty brain.

     "No, I don't want to take Novantrone if it can cause leukemia and heart failure.  Besides, what if I need it later on and I've already used up my life time limit of the drug?  No, I don't want to 'try' Rebif just for kicks.  Avonex made me deathly ill after a year of interferon.  I have to be able to go to work.  My lifestyle can't accommodate being sick from shots all the time.  When will Tysabri be back on the market?"  These are my verbalizations.

     "There's a 1 in 1,000 chance you could develop PML and die from the Tysabri.  Plus, you'll have to have a spinal tap before I would put you on it," she says.  My eyes further glaze over.

     I start thinking to myself, "What if my insurance (which is why I have to be able to function and go to work...to keep my insurance) won't cover Tysabri?  What if it kills me?  All of these choices just plain suck!  I can't surrender to this.  I don't know what to do.

     "OK, I know Tysabri could kill me, but I could be hit and killed by a bus with the same odds.  This is what I choose if it ever returns to the market for use again.  Aren't they predicting sometime in June?" I question, as I know my neurologist was one of the doctors who sat on the FDA review panel.

     "You need to be hit again with a blast of steroids, then we'll wait and see about the Tysabri in June," she says.

     "OK," I say in agreement.  We banter jokingly back and forth about stupid issues and I schedule yet another IV infusion of steroids. 

     We wave each other off down the hall and I know she has no idea my insides are screaming out in fear.  I don't let her see the tears running down my cheeks. 

National Nurse's Week, May 6th - May 12th...Have You Hugged A Nurse Today?!?

     In honor of my many sisters and brothers across the country celebrating (yeah, right!) National Nurse's Week, I give you:

 

    Subject: Nurse's Hell . . .

     A doctor died and went to hell.  He was met at the gate and asked to stand in a room and wait for Satan.  After 4 hours Satan finally appeared.  The doctor was incensed.  Poking his watch he said, "How could you keep me waiting so long!  I am an important man!  I'm a doctor."

 

     Satan replied, "Doctors are a dime a dozen here in hell.  But I'll tell you what.  Since you had to wait so long, I will give you a choice of which part of hell you will spend eternity in."

 

     Satan took the doctor down a hall and said, "Here.  I'll be back shortly. You can choose between door # 1 and door # 2.  I'll be backand you can let me know where you want to be assigned."

 

     The doctor opened door #1.  Inside was an Intensive Care Unit. Blood was spurting, alarms were sounding and patients were coding. A man in the corner extubated himself as a woman in the center fell out of bed. The doctor quickly shut the door and said, "My God, I really am in hell. I'd better check door #2."

 

       Behind door #2 was a medical records department.  Unfinished charts stretched for miles with notations about delinquent H&P's. Message slips from managed care case managers filled a swimming pool sized bin, all marked urgent.  Inside, physicians were dictating as sweat poured off their brows. The doctor shut the door and said, "I don't know which one is worse."

 

      Then he noticed another door off to the side.  He opened it and inside was a tidy nurse's station. The nurses were all young and beautiful. They were busily making rounds with doctors and calling to obtain lab and xray results. They poured coffee and served donuts purchased with their own money. One doctor complained of a stiff neck and a nurse rubbed it for him. "Now this is more like it," the doctor thought as he closed the door.

 

      Satan came strolling back down the hall and said, "Well, which have you decided on, Door # 1 or Door # 2?"

      The doctor replied, "Actually I would like to go behind door # 3."

 

      That's not an option," said Satan.

 

      "But that's what I want!" said the doctor.

 

      Satan replied, "I'm sorry but you can't go in there. That's nurse's hell.”

A Letter To My Mother

Dear Mom,

     With Mother's Day quickly approaching and the bombardment of ads for gift shopping invading my life, I have been thinking of you quite a lot lately.  I decided perhaps writing you a letter on the Internet might be the best way to reach you these days, since even AT&T has not developed a long-distance plan that can reach beyond the grave!  Yes, Mother...I AM still irreverent.

     I thought you might want to know I'm doing the best I can to take care of myself these days.  You unfortunately died before I was diagnosed with MS, but I know you always worried about my health.  It appears the Multiple Sclerosis may have been lurking in the shadows even before you passed, but neither I nor the medical community knew it was stirring inside my body.  When the doctors finally told me it was there, I really wished you had been around for me to tell because I felt so scared.  I know you probably would have given me the advice you always did, which was to "do what the doctors order and tough it out"...it just would have been a comfort to hear you SAY that.

     I have been "toughing it out" for the past three years and it hasn't always been easy, Mother.  You used to always say, "God never gives us more than we can handle", but there have been times in the previous three years I have wondered if you really knew what you were talking about.  It's been hard for me to accept "God" would ever inflict this type of disease on anyone.

     This coming week, I am to see my neurologist, who I already know is going to tell me the MS is progressing...my study doc already whispered these words in my ear.  And it's not rocket science to figure out some of the symptoms of my last relapse are not going away, indicating "something" has changed significantly. 

     I'm scared again, Mom.  I don't want confirmation of what I already know.  I also know THAT sounds somewhat crazy, but hearing it confirmed by the neurologist makes it real and I'm not keen on reality right now.  (I know, "straighten up and fly right"...I hear you.)

     You used to always tell me, "this, too, shall pass", whenever something difficult or bad happened in my life.  I know there is logic in your wisdom, but holding onto that logic these days is hard.  I wish you were here to tell me that in person or over the phone...if I close my eyes hard enough and remember, I can almost visualize you saying it..."this, too, shall pass".

     There are so many things that happen every day in my life I regret not being able to share with you.  Sometimes I wish I would have spent more time with you, called you more often, listened to you, and told you I loved you whenever I could.  I suppose we both did the best we could while we could.  I have a feeling none of that really matters now to you.  You just want me to be happy, healthy, and whole, without regrets.  I suspect that may have been all you really wanted for me when you were alive, too.

     I miss you, Mom, and I hope wherever you are these thoughts and feelings will reach you in the afterlife.  I love you.

Happy Mother's Day,

Your youngest daughter

De Nile Is A Deep River...

     I'm not exactly certain when or why denial became such a dirty word in our western culture...I've been swimming in De Nile on many occasions and have found it to be a rather lovely dip into the waters of avoidance, procrastination, and contradiction.  And those last three words aren't necessarily "dirty" either!

     Denial is one of those mental states we all too often perceive as negative or maladaptive, yet for some reason we have all experienced it at one time or another in our lives.  It can come in the form of simple disbelief of a fact too difficult to fully digest or it can be a complicated motivator that pushes us beyond a constraining belief we have held about ourselves.  In either case, it is neither negative nor maladaptive.

     Even Dr. Elizabeth Kubler-Ross identifies denial as one of the five essential stages of grief.  Here's a link if you're interested:

 ( http://en.wikipedia.org/wiki/Five_stages_of_grief )

Dr. Kubler-Ross theorized, when faced with a catastrophic loss such as death (although others have expanded her theory to include any situation we perceive as a "loss"), there are five, basic mental processes we all must pass through to achieve success in dealing with the loss or reaching the final stage, Acceptance.  She revolutionized modern psychology and the process of death and dying in helping to cease the shunning of dying patients and the isolation they felt.  In other words, she "normalized" the psychological process of death.

     So, based on the above information, I have to believe DENIAL is not the creepy neighbor lurking next door and waiting to kill us in our sleep as soon as we turn our back on him (strange analogy I know!).  We were led to believe this however, during the Self-Help Era of the 1990's when we were all in "denial" about our drinking, smoking, eating, exercising, sleeping, gambling, religious, dating, marital, and sexual habits.  I am certain a self-help group was born during that time to assist all of us in getting out of "denial".  We were led to believe our "denial" would ruin our lives and perhaps even kill us.  But I'm here to tell you in 2006 "denial" is in fact, "normal", and I am sick and tired of it getting such bad press!

     Now I DO subscribe to the notion too much of ANYTHING can be harmful.  Good lord, too much sleep can kill you if all you do is lay in bed day after day!  And I think everything should be taken in moderation.  But what is "moderation" to one person may not be to another.

     Back in the Stone Ages of my nursing school days, we used to hear a funny saying when someone came into the ER totally intoxicated, admitting they had only had one beer.  Inevitably, a crusty old and worn nurse would say, "One beer, eh?  And just how BIG was that beer?", sending us all into guffawing laugher out of earshot of the inebriated patient.  The patient was obviously in "denial" and not adept at "moderation", or perhaps the alcohol simply made them really stupid to think the nurse would believe their tall tale!

     But moderation is truly an individual thing...as is denial.  And what may become seriously maladaptive to one person may not to another.  So not everyone's denial is a destiny with a life lived in pain and suffering just because they didn't do it or see it yours or my way.

     I am close friends with my denial.  I, at times, bask in it.  But one could argue if I know I am in it, is it truly "denial" then?  Frankly I don't care.  It has been a life saver for me.

     Currently my "denial" about my impending discussion with my neurologist on Tuesday is working quite well for me.  As long as I am not focused on my unknown future, I find I can be very productive.  Even with my two, gimpy arms I've gotten a lot done!  Heck, I'm typing THIS, aren't I?  And I have successfully avoided an on slot of anxiety/fear by writing about denial for an hour...go figure. 

     Oh, she is such a lovely river...

It's All About Balance...And A Little Luck Doesn't Hurt Either!

     Ok, I didn't write in The Blog yesterday...so sue me!  I'd say I simply forgot, but that would be a lie.  I didn't forget, I just ran out of time.  And I ran out of time because I've been RUNNING for the past week!

     Somehow this past week, I managed to schedule an appointment every morning and still go to work full time.  I don't know how or why I put myself through these marathon weeks, but this certainly was not the first one I was able to put myself into a tail spin over.  And what is worse is every appointment had to do with PROMOTING my health via doctor's appointments while slowly wearing myself down.  It's now Friday evening and I feel like the short nub of an eraser worn down to the metal casing...there is an evil, little voice inside my head screaming, "It's all about balance, baby!"  Yeah, like I didn't know THAT already.

     Tomorrow morning I go for my final appointment of the week (yes, on Saturday) to get my third MRI of the week...yes, I realize I blogged last week about getting TWO MRIs in one week, but I was wrong.  It seems the hospital where I did my first MRI (remember I had to get two because the Rituxan Study people are being piggish about sharing their information with my current neurologist??) somehow "forgot" to do the brain scan portion and only did my spine, so I have to return tomorrow to see if they can find my brain.  They have assured me, however, they will not be charging me for two scans (a consolation bargaining point I'm sure)!!!

     OK...how do you "forget" to scan someone's brain?  I'm just curious.  I DID ask the radiology department this question, but no one seemed to have an answer, so I've made up my own.  Drum roll please......

     I don't think they "forgot" to scan my brain at all.  I think I "willed" it not to happen.  Why, you ask?  Because I really don't want confirmation of what I have already been told by my Rituxan Study neurologist...I have new brain lesions.  And I don't want to know this because it has already been suggested I start on another interferon, which I do not want to do.  So if I don't see it on film, it's not happening in MY head, and therefore, is not a problem.  This sounds perfectly logical to me.

     Not only am I trying to balance out my marathon week of appointments, but also my issues of logic (or illogic, as the case may be), and it IS quite a tight rope I am placing myself upon.  I know on some level I will have to confront what is most likely occurring in my noggin, but I'm simply not ready to do that just yet. 

     So I'm hoping to "will" the MRI department tomorrow to perhaps send some healthy person's results to my neurologist on Tuesday and I can claim complete cure from MS...I just need a little "scale tipping" in my direction right now, even if it's only an illusion.

     I know, I know...It's all about balance, baby...I KNOW!

Don't You At Least Have To Know HOW To Play Tennis To Develop "Tennis Elbow"?!?

     What is that old saying, "When it rains, it pours"?  I suppose because I live in Seattle I should expect quite a bit of "rain", but I certainly wasn't prepared for the latest downpour today at my ARNP's office!

     If you've been following The Blog (as I like to artistically call my ramblings in writing here), you read how I attempted to play Wonder Woman two weekends ago in the yard...only to land myself in a bit of a physical stupor for the remainder of the weekend.  Well, the secret little news I didn't share with you besides my exhaustion was the strange and increasing arm pain I developed shortly AFTER my "yard event" (it doesn't seem quite that bad to me if I call it an event...rather festive, actually). 

     Now mind you, the pain I developed was in my GOOD arm...not my gimpy, neurologically disastered left arm.  That would have been too simple.  I mean, my left arm already hurts from nerve pain and I wouldn't have cared all that much if it continued to poop out on me...I've actually considered just having it removed as it isn't performing up to the standards I had hoped it would by now post relapse!  But for balance purposes, I've just left it intact...for now.

     On Monday evening following my "yard event", I developed this rather severe burning pain deep in my right elbow.  Of course I immediately diagnosed myself with a fatal bone disease or tumor and thought little more about it, except when it frequently reminded me to pay attention to it...which was, like EVERY TIME I USED IT!  But being the good MSer I am, I simply "adapted".  I started using my teeth to open things (I'm sure my dentist will love this) and figured out how to carry and do things with TWO gimpy arms.  I got by...not gracefully, but I managed all the same.

     Yesterday, I again had the day off and noticed the yard (Satan's playground) was in need of some trimming and mowing.  This was the front yard and not the hill, so it seemed fairly benign and not nearly the "event" of last weekend.  And not wanting to seem like a real whimp, I tackled it...ignoring the fact my right arm continued to have this deep, burning pain.  As my old basketball coach would say, "I pushed through the pain".  I always thought that was a rather stupid saying then and I'm living proof to tell you it IS a stupid saying now!

     This morning I woke up to get ready for my ARNP appointment (to deal with yet another health issue...hypertension caused by my study medication, Rituxan) and found I could barely bend my right arm.  And what's more, when I DID move my forearm around, there was this strange, dry squeaking sound emitting from my arm and elbow!  I felt like the Tin Man needing a bit of oil!

     So after a few brief tests of endurance by my ARNP (you know, moving things around and asking me if "that" hurts...she's just sadistic), she informed me I had a severe case of Tennis Elbow.  I was dumbfounded.  I don't even play tennis and I haven't been near a court in years, except for the occasional viewing on ESPN.  I, of course, questioned her diagnosis.

     She asked if I had done anything strenuous recently and I sheepishly admitted my yard work debacle (it had sunk from an "event" to a "debacle" by this time).  There were choice words of chastisement that followed from her lips with a stern look of discontentment, as if to say, "You know better than this.  WHY do you treat your body this way, then come here and expect me to fix it?"  Actually, come to think of it, she may have said those words out loud...OK, she did.

     So, now I have this bulky wrist mobilizer and a separate band wrapped around my forearm with explicit instructions I am to "cease and desist" all yard work and any other use of my right arm until my Tennis Elbow heals...she even tried to scare me into submission by telling me if I DIDN'T obey her command, I would develop a very chronic and nasty tendonitis that would hurt for a very, very long time.

     I guess there will be no more tennis for me for awhile, which is OK...I never really liked the sport anyway.