Wednesday, April 30, 2008

Birds Of A Feather...I Mean Birds Of A FINGER...

Some things are NOT MS-related...I'm pretty sure the issue I am having with my right, middle finger is not. I have been having intermittent spasms occurring in this finger...the one in the picture (which is NOT my old lady hand, by the way. LOL), only on my RIGHT hand. Why, God...Why?

The medial joint in my "bird" finger has been aching for a few weeks now. At first, I thought I had done something inadvertently to my universal sign language finger...the joint appeared mildly swollen and...well...it ACHED! I complained about my new "pain" to a few friends at work and they jokingly thought perhaps I had developed Over-Use Syndrome...you know...from flipping the "bird" too much. The only real sign language I know. But I SWEAR I have not over-used this delicate communication device.


Then, I blamed the pain on my Tysabri infusion. After all, EVERY joint in my body ached following my infusion three weeks ago (when I thought I was developing meningitis the next day because my neck and shoulders ached so much?...sigh...a little medical knowledge is a dangerous thing). But the pain in my finger developed shortly AFTER the pain in the rest of my joints began to subside. And besides, no one would believe me if I said Tysabri had caused localized swelling in my "bird" finger! Dr. She Who Will Not Be Named would have LOVED that explanation.


Then yesterday when I woke up to go to my psychiatrist' appointment, the ache in my finger had turned into spasms...painful spasms that got my attention. I of course, consulted my shrink (who IS a doctor, too...or at least she was a "real" doctor before she became a psychiatrist) by flipping her the "bird" and announcing I was having spasms in my finger. She flipped the "bird" back at me and asked, "You mean THIS finger?"


"Yes," I said. "THIS finger" (with my banner "bird" finger still flagrantly flying in the air). We laughed at the silliness of the communication, but secretly I took great joy in...well...giving the "bird" to my doctor! Not that I dislike her or anything. It's just how OFTEN does one get a free pass card to "finger" their psychiatrist?!? I saw an opportunity and I took it. Wouldn't want to let a once-in-a-lifetime event pass me by...hehe.


I believe consequently, because of my naughty behavior, my middle finger is STILL spasming today...sigh. And I am afraid I have developed some type of arthritis in the joint (which simply means an inflammation of the joint...not necessarily "the" arthritis we sometimes get with aging or other disease). It is so tender now, I find myself keeping it in constant "bird" attention away from my other two fingers so as not to rub the joint. I appear (to the unknowing eye) to be continually telling the world to F-off!


And who knows...maybe I AM unconsciously telling the world to F-off? Wouldn't be the first time. I just hope my finger doesn't STICK this way...in permanent "bird". I'm afraid I could find myself in a heap of trouble at work...or parties...or the grocery story...or...LOL...

Questioning The "Quality" Of This Blog...

Every now and then, I peer deeply into the statistics accumulated by my super-secret "I know what you've been doing" stat counter and take a look at what sort of searches people are performing in their meandering paths to CHEESE. I'm always delighted when MSer's, in particular, "Google" (is that really a verb?!?) certain MS topics and are directed to this blog. And, of course, the bane of my statistical counter are the numerous unsuspecting folks who do an Internet search for JESUS CAMP...there STILL are unfortunately MANY "campers" out there jumping into CHEESE thinking they've hit the fanatical religious jackpot by finding the picture I posted of a 7 week old fetus last year...sigh...double sigh...

Today, I happened into the repository bat cave of my stats counter and discovered something that has caused me to question both the value and quality of this blog. I don't know if I should be delighted in this find...or...shut down CHEESE and run!


Today's top Internet searches that have directed inquiring minds to BrainCheese have been:



  • Pants peeing incontinence funny embarrassing

  • Chin hairs and diabetes

  • Monkey waving

  • What is your stage name?

  • Moon faces from the past four weeks

What do YOU think??? Should I be concerned? LOL (Those JESUS CAMP creepy people are starting to look more and more sane each day...)...


Monday, April 28, 2008

Stopping To Smell The...Ah...Well...

...Roses just AREN'T in bloom yet! So, I stopped to smell an assortment of OTHER flowers growing magnificently along my path down to the lake. And I thought I'd share just a few pictures of the wonderful, Sunday beauty on my way to Lake Washington from my house.

Enjoy!

Friday, April 25, 2008

The Obituary...


My Energy--
July 23, 19something to April 2008

Best known for spontaneity and always being there when I was in need, MY ENERGY passed away quietly in the night, sometime between April 2003, and April 2008. MY ENERGY was the backbone of this circumstance I call MY LIFE. Always with MY LIFE since birth, MY ENERGY sustained MY LIFE through many events, such as employment opportunities, family crisis, parties, mundane tasks, shopping excursions, gathering of friends, scrubbing the toilet, vacuuming, and a host of other events too numerous to list.


MY ENERGY was born into this world with a zest for living. Always willing to lend a hand to any in need, MY ENERGY assisted in accomplishing many life goals. In 2003, MY ENERGY was tragically struck with the blow of MS. But even after the diagnosis of MS, MY ENERGY continued a valiant attempt to accomplish many things. Always "peppy" and with a smile, MY ENERGY went above and beyond what would be normally expected of anyone. MY ENERGY will be greatly missed.

MY ENERGY is survived by MY BODY, MY MIND, and MY LIFE. Funeral services will be held at a private ceremony of close relatives and friends.

Wednesday, April 23, 2008

I Am An Addict...

And thank goodness my addiction isn't something like heroin, or cocaine, or (God forbid) COFFEE! No...I'm a MOUNTAIN DEW addict...plain and simple.

Remember last year when I did the trial experiment called "DOWNSIZE ME"? I went on a complete, no caffeine diet for 30 days...and, I have to say, I DID feel better following my horrid withdrawal period (friends around me did NOT feel better during the ordeal, but later witnessed the improvement). Once I had kicked the habit (so to speak), I found I had MORE energy and was LESS tired than my usual fatigued self. I also lost a smidgen of weight in the process as an extra bonus.


Well...somewhere over the past few months, I have fallen back ON the wagon and started guzzling my urine-yellow elixir! It was a subtle return to my diet at first...I found myself feeling waaaay too exhausted, so I grabbed the DEW off a grocery shelf a few months ago and downed one. I will admit, it tasted DAYUMED GOOD. And, slowly over the course of a few weeks, I found myself buying the tantalizing drink...first, only in singles...but later in FULL TWELVE PACKS. I was addicted once again.


This past month, I have been lamenting about my fatigue. I have certainly had many instances in my personal schedule to tire myself out (like working night shifts, meetings, etc.) and, with the worsening of my MS symptoms, the fatigue factor seemed an "unnaturally natural" course. I have felt tired for a REASON...perhaps even BESIDES MS. I have also noticed the aching returning to my joints and a horrible muscle stiffness settling in around my neck and upper arms. This, coupled with sores erupting in my mouth and what has felt like the beginning signs of a urinary tract infection, caused me to stop and examine my current MS status and routine. I have also (once again) started adding just a few pounds back from my recent hard-earned weight loss.


When one is a TRUE addict, it is difficult to point a finger directly at a cause...but I believe ONE of the culprits of my recent decline has been my intake of "The DEW". There IS scientific evidence out there that an increased intake of processed sugars CAN set up the immune system to begin to malfunction (not that mine isn't ALREADY malfunctioning due to MS...but you know what I mean!)...our bodies become more susceptible to infection as well as a shifting of fluids occur within the joints (causing pain). In other words, TOO MUCH OF A GOOD THING CAN BE DAMNING...sigh...


So...I cut myself off...cold turkey...from "The DEW". I did this illness-defying act yesterday on my first of three days off from work...I knew I would need some "alone time" to pull the stunt off. LOL So far, so good. Except I have really been JONES-ING for an ice-cold DEW!!!! I never realized how unconscious I had become once again about drinking the darned stuff. I have been tempted to hit the dark alley behind the Pepsi Bottling Company just to see if I can SCORE some of the "juice"...it's about that bad.


I'm hoping once I get past a few days of life without "The DEW", I will begin to see some improvement in my fatigue, joint pain, and general health. If not...you'll probably be able to find me behind the dumpster at the Pepsi Corporation spending my hard-earned cash for a "hit" of the drink. I'll be the one hunched over in pain because my knees hurt, searching for a bathroom due to urinary frequency, and going by the street name, "BrainCheese"...

Tuesday, April 22, 2008

You's Guys Were A Hit!...

Well, I can't seem to go more than a month without lamenting about those Breast Cancer Awareness Folks...but THIS time, the news is also good for us little-known MS Awareness Folks!



Remember THIS post? The one where y'all donated your creative energy to help out my new friend, PennyAnn, with BC Awareness slogans for her fund-raising party? Well...she USED them...and turned several into coolio buttons for sale:


And, she has started her OWN blog to support her friends that are walking the 3-Day Walk For A Cure. If you are interested in hearing/reading more about her adventures, here's the link: Our Ladies Of Perpetual H.O.P.E. .



Now, off to turn the wonderful slogans for MS Awareness that SHE created into something...well...MS appropriate. Perhaps T-shirts? I'm not much of a button person...buttons don't ride well on canes and scooters...

Saturday, April 19, 2008

Chance Meeting...


I met an angel today...she was disguised under a cloak of mental illness, but I recognized her just the same.

Friday, April 18, 2008

Dog Days Of...WINTER?!?!?...

As the sleet continues to fall in tiny sand-sized pellets outside my window and I am FORCED to once again BLAST the electric heaters just to keep from breaking off my teeth in constant chatter, I am reminded it is mid April in Seattle. It is now 34 degrees outside. I live in an elevation 500 feet above sea level and we are expecting SNOW in the hood. This can't be happening...I am in some strange time warp. Just this weekend the temperature rose to 80 degrees...I was sweating in a T-shirt. The Ground Hog saw his shadow, but that WAS over six weeks ago. Why God, WHY?!?

Remember...you heard it FIRST here on CHEESE: IT IS COLDER THAN A WELL-DIGGER'S A$$ OUTSIDE!

Wednesday, April 16, 2008

Sinking Into The Quick Sand...As Slow As Molassitude...


I suppose yet ANOTHER explanation is warranted to all y'all who have been sending me emails and leaving comments on CHEESE, etc., regarding the disappearance of CHEESE CHAT, the MS Tapestry Project, and general inquiries about my health. I really haven't been ignoring you, in spite of trying desperately to IGNORE the overwhelming fatigue I have been experiencing of late.


I don't like to post/write about MS fatigue...particularly my OWN. Somehow, like millions of "others" who have never experienced MS fatigue, I still hold court in the back of my mind, trying to determine if I am REALLY experiencing a debilitating symptom of MS...or, if I've just succumbed to being LAZY.


There...I dared to say it. Most of us with MS DO think/wonder that about ourselves anyway whenever we are battling neurological fatigue...one of the primary symptoms of Multiple Sclerosis. And since I can only speak for myself, I'll just say "I" worry about balancing this crazy thought process between lazy inertia and literal neurological dysfunction that creates MS lassitude.


Webster's Revised Unabridged Dictionary defines "lassitude" as: A condition of the body, or mind, when its voluntary functions are performed with difficulty, and only by a strong exertion of the will; languor; debility; weariness. I'd have to agree with dear ol' Webster once again...my performance of late has been "with difficulty". And it has ONLY been because of strong exertion I am getting through my work days. I find myself feeling exhausted (but not necessarily "tired/sleepy") routinely each day. Nor do I feel depressed (said just for all of the armchair psychiatrists, such as myself).


What I struggle with mentally when trying to FORCE myself through my MS lassitude is determining WHAT activities might actually benefit me, i.e., give me more energy and less fatigue, and what activities of my daily life will end up zapping me of my strength, like Kryptonite sucking Superman's will to live. And I have to admit, I am NOT very good at making these judgments for myself. I know exercise DOES increase my energy stores in the long run (no pun intended), but OVER-EXERTION physically zaps me. I know that sometimes, if I just "push" myself to get to work, once I am there I feel fine...other times, once I am there, I feel like I want to die...if for no other reason, than to LAY DOWN! It is a physical balancing act that seems to change on a daily (sometimes hourly) basis.


And then there is the mental/emotional toll MS lassitude/fatigue takes...I'm REALLY skilled at convincing myself I am simply being "lazy" versus neurologically impaired. I sometimes jokingly refer to my fatigue as "MS Assitude" or "MS Molassitude"...or "FAT eeg" because I am overweight. Somehow making fun of my inability to get up and go because of a character flaw seems much more palatable/acceptable to the general public than trying to explain a HIDDEN neurological condition...everyone can relate to LAZY, yet few can relate to true MS lassitude...just like everyone can related to the assumed pain of a broken bone. A broken leg is tangible, visualized, experienced by many...MS remains an obscure, poorly understood disease.


I no longer experience intense rage when a well-meaning (or even NOT well-meaning) person tries to relate to my fatigue by aligning with me and saying, "Oh, yes...I'm really tired, too". My usual response NOW is to say, "I'm sorry you are not getting enough sleep" (my prior response used to be thought in my head: "Hey, there's a difference between being a lazy a$$/staying up partying too late/__fill in the blank__ than what I have going on!")...and I leave it at that. I seriously believe unless someone has EXPERIENCED MS lassitude, they have absolutely NO background to base their comment on, EXCEPT generalized tiredness. It's not their fault really...and I'm certainly not WISHING MS fatigue on them!


But, I DO still experience my own form of "MS lassitude guilt"...somehow, I can easily cut the ignorant slack (those who have no idea what I am experiencing, yet want to relate), but I continue to beat my own character with a stick. It was ingrained in me, after all, to NEVER be lazy...to work hard for what I get...to go the extra mile. I'm lucky now to make it the extra BLOCK, let alone a mile! Somehow, in my mind, if I only "try" harder, I will be granted magical points on my success card...unfortunately, the only one REALLY keeping score on that card is ME.


So, as you can see, this post is being written from my place of MS lassitude guilt. I am trying to explain away to y'all the WHY'S of my falling short of my OWN expectations of myself (because NONE of YOU have demanded anything from me!)...the reasons and rationales WHY I have not scheduled another CheeseChat time or continued my efforts toward the MS Tapestry Project. I've been sinking in the quick sand of fatigue and too PRIDEFUL to admit this publicly. What you don't know can't hurt you, right???


But what I choose to NOT know or IGNORE can and does hurt me...so I'm letting you in on my little secret. I'm effing tired/fatigued and I can't manage any more right now than simply getting out of bed each day and going to work. I "should" be thankful I still CAN get out of bed and go to work..but frankly, I'm not all that thankful in the moment...I'm wallowing in a severe case of a bad ASSITUDE...LOL...

The Truth Lies Somewhere In Between...Somewhere Between The Billboards...

It seems like every time I pick up an article dedicated to Multiple Sclerosis, a magazine, or a recent research study, I am bombarded with some obscure figure/fact how "such and such area of the world/nation/state/region/city has the highest incident of MS". We, here in the Pacific Northwest, boast this claim...particularly Western Washington State. But then there is also Ohio and parts of Texas and a remote area of New York State...the list of "highest incidents" seems to correlate directly with whichever organization is ASKING FOR MONEY FOR MS AT THE TIME.

Here in Western Washington, AKA the Puget Sound Region, we have a very active local MS Society Chapter. This is good...because if you read the local literature, we have "one of the highest incidents of MS in the nation". LOL I don't really KNOW anymore if this statistical bragging is true...it seems everywhere I turn, MS is lurking under a rock just waiting to be discovered and added to the growing count of the "diseased". And yet, by all practical standards, Multiple Sclerosis research is one of the LEAST funded nationally unless the MS Society is throwing our donations at some research about positive experiences" , etc. (And actually, in defense of the National MS Society , they did NOT fund THAT particular nonsense research I posted about last week...no, that was our lovely federal government agency, the NIH.)


Over the past two years-ish, the local Greater Washington MS Society has been funding an expensive billboard campaign to raise MS Awareness. The billboards are designed to ask the question, "What is causing the higher incident of MS in Western Washington?" Is it the weather? The water? The rain?...it seems to be working as the billboards have caught the eye of one of our off-beat news papers, THE STRANGER . This photo ran a few weeks ago in THE STRANGER and I couldn't help myself in sharing it with you here:

Personally, I can't help but wonder if the newspaper isn't correct in their assumption, "Is it in the billboards?"...LOL...

Tuesday, April 15, 2008

"You definitely have Multiple Sclerosis". The neurologist said this with emphasis on the word "definitely". He also said this with somewhat arrogant smugness...as if he was proud of his proclamation. So self-assured...so convincing...who was I to question this man's judgment? I was only the "patient" (translated to, "the person who is going to mindlessly pay my bill for this 5 minute consultation") after all.

But I DID question...I had so MANY questions. I was a nurse, but had only had a 1/2 hour lecture about MS in nursing school almost 20 years prior to the neurologist's proclamation. And, I was a psychiatric nurse...my mind was filled with minute details about psychotropic medications and therapy techniques and DSM IV diagnoses. There was no room in my brain for any obscure neurological condition like Multiple Sclerosis...and now this arrogant bastid was telling me there was a chance a LOT of room could eventually be created in my brain via "black holes" and "enhancing lesions" and "axion damage". But, this was possibly going to become USELESS room in my brain...blank spaces...debilitating me over the next few years.


5 years ago TODAY, I sat in this neurologist's office listening to him spew his passionless line, "You definitely have Multiple Sclerosis". And 5 years ago today, my life changed forever. Not that it wasn't ALREADY destined to "change forever"...such is the nature of living. There is no precharted path...no preplanned course of journey...no guarantees in living. We are only promised a "chance" at being born, living, and eventually dying...these are the ONLY guarantees in life. And "IF" we are fortunate enough to extend the middle portion of the journey (living), then we take our chances with how the dice will land. MY dice just happened to bounce with an "M" and and "S" face up...snake eyes.


At first, I was certain I had just received news of a death sentence. Over the course of the next year (or at least until my taxes were due AGAIN on April 15, 2004), I fell into a typical "newly diagnosed" depression. I worried EVERY day that THIS day would be the one I awoke blind or paralysed or incontinent or unable to swallow. And some days I DID wake up with pain or numbness or an inability to put one foot in front of the other or with my world spinning violently out of control thanks to something I now know to call "vertigo". But, my "death sentence" never came...in spite of my sometimes WISHING it would. As my friend PennyAnn graciously stated to me a few months back in her attempts to come up with appropriate MS Slogans: "MS isn't fatal. Most days, that's the good news".


The concept of time has become more and more difficult for me to comprehend as I age. Although I DO distinctly remember/recall that shock of hearing "You definitely have Multiple Sclerosis" 5 years ago, I have a much harder time recalling each detail of my journey with MS since that fateful conversation. Somehow, in spite of myself...in spite of statistical "odds"...in spite of a case of "aggressive MS"...in spite of multiple failed drug trials...in spite of EVERYTHING...I have managed to continue living with MS with considerably LESS disability than many of my MS friends. And, BUT FOR THE GRACE OF GOD, GO I.


I looked back last night through news casts and newspapers to see what was happening in the world on April 15, 2003. I was both pleased and a wee bit disappointed the fact I was diagnosed with MS did NOT make any of the news headlines...not even an honorable mention. Which leads me to believe it really WASN'T that newsworthy after all! But here I sit typing about it all the same...and I have to admit...5 years later, it remains not a big "news story"...to anyone, BUT me...

Sunday, April 13, 2008

A Good Day Was Had By All...All ONE Of Me...

Life is good...I was able to be outside today and stick my hands in the dirt for a bit...right before the legendary Seattle drizzle began again. I really CAN die in my sleep a fulfilled individual.


I also got to tinker around with my digital camera and, other than the Princess O' Darkness (cat, for any new readers!), there's nothing I like to photograph more than flowers and nature. Here are a few shots of my girls:






Saturday, April 12, 2008

Why I Watch The Runs...

Nope, this isn’t a post about diarrhea or Irritable Bowel Syndrome. LOL It’s a post about living, being grateful, and honoring. :-)

When I was a “tween”, I dreamed of playing professional basketball. And, for any of you that can RECALL the 1970’s, there WERE no professional women’s basketball teams. Yet still, I dreamed.

I practiced the game of basketball nearly every day…sometimes several times a day when I could. Before the age of 10, my father purchased a basketball backboard with a rim and net and affixed it to the top gutter of our garage…he even “fenced in” the garage windows to avoid my NBA (Nothing But Air) shots straying into the glass and costing me my hard-earned lawn mowing money. The sound of hollow rubber bouncing off the cement could be heard long after dusk…right before my mother would sternly call me into the house to get ready for bed.

Part of conditioning work to play the game of basketball included running…this was the primary aerobic exercise available in my small village, where going to a “gym” was not an option. I would wake myself up, sometimes hours before school, to run on the dirt, country roads near my home…an act I found both freeing and exhilarating. As the cool morning air on the Plains brought a rosy-redness to my cheeks, I would run past the wheat fields…watching them change throughout the seasons from freshly plowed dirt in the spring to golden waves flowing in the summer winds. Running took me far away from any thoughts of discord in my home or the usual troubles of trying to grow into adulthood. It also took me closer to my goal of fine-tuning my game of basketball.

For me, running was simply a means to an end…a conditioning exercise to strengthen my lungs and heart so I could endure 48 minutes of fast-paced time on the basketball court. I would “push” myself until I fell exhausted…sometimes pushing my distance or run time to the point of vomiting. This exercise paid off for me when I found myself rewarded with a scholarship to PLAY basketball on one of the women’s teams at a state college.

At some point along my journey into adulthood, I stopped running…both figuratively and literally. After college, there was the occasional “pick up” game I might find on a city court or the community team I could join…where drinking alcohol and having fun with friends outweighed any free throw skills. Running no longer served an important purpose for me. I had not, after all, wanted to be a track star…just a basketball player…and I had achieved that goal. I slowly fell into inertia and running became something I knew I “could” do, but chose not to.

As I aged further into my life, gaining considerable weight from the conditioned physique of my college years, running became less and less of an option for me to attempt…and frankly, it became less and less of an idea I would even WANT to attempt…until my parent’s deaths in 1997.

When I returned home on those memorable occasions in 1997 to bury both of my parents and clear out my childhood home for sale, I would go down to the outdoor court where I used to practice my 3-point shots (there WERE no 3-point shots in the game when I played the sport, which only reveals my age even further!)…Once, I even drove along the dirt roads I had once jogged and sprinted upon…and a yearning to “run” pulsed through my veins. I vowed when I returned to Seattle I would resume “conditioning” my body and try to recover what had been lost through years of inertia and hard living. I started exercising more regularly and tried to drop off the tire of weight that was accumulating around my torso.

In 2000, I encouraged a friend of mine to join me to condition for the Seattle Half Marathon WALK…a 13.1 mile walk seemed doable as I was STILL not up to running/jogging any distances. We trained for this event most of the spring of 2001 and felt exuberant that November when we crossed the finish line and received our honorary medals for completing the walk…we felt so accomplished, we did it AGAIN in 2002…but THIS time with the goal of RUNNING the Half Marathon in 2003. And secretly in the back of my mind, I decided “if” I could RUN a half marathon, I could surely run a FULL marathon at some point in my life.

As most of you know, in the spring of 2003, I was diagnosed with Multiple Sclerosis. I had been plagued with ghost symptoms of the disease for a few years before 2003, but I continued to “push” myself through pain/discomfort, sometimes to my own detriment. By the time the Seattle Marathon rolled into town in November, 2003, all thoughts of RUNNING the Half Marathon had vanished…yet still, I “pushed” myself to walk the 13.1 miles again…and paid the price with a 2 ½ month relapse following the event. In January, 2004, I was no longer certain I would even WALK again, let alone any distances. I was told to give up the lofty goal of trying to make the Half Marathon Walk that year (and any years to come) and simply concentrate on KEEPING whatever functioning I had at the time. And, as instructed, I “let it go”…gaining more and more weight from steroids and conditioning my body less and less due to pain and other symptoms.

In the spring of 2006, I changed neurologists…I began seeing Dr. She Who Will Not Be Named. As you have read in many past posts, Dr. SWWNBN and I have a most “unusual” doctor-patient relationship, which has worked out quite well for me. She is a spunky, face-slapping, get-in-my-face, yet compassionate and humorous neurologist…and I remain my typical noncompliant, challenging, sometimes medically complex, and “endearing” patient…the combination seems to flow nicely between us. Dr. SWWNBN is ALSO a marathon runner.

I discovered this side hobby of hers in conversation one day in 2006 and began following her many “runs” (there’s that word again…hehe…) since that time. To date, she has run somewhere around 11 marathons…the full 26.2 miles…and lives to tell about it. I have even lined the streets of Seattle during her 2006 and 2007 marathon runs, waving her onward (and of course, yelling obnoxious greetings!)…while leaning precariously on a cane. I am truly amazed at her tenacity AND her ability to find the time in her busy practice to travel to other states, RUN 26.2 miles, and return on Monday to see patients…all done with ease, grace, and a smile. When I can, I keep track of her running locations and times of each race, usually sending encouraging emails in my feeble attempts to spur her onward.

Early on in my “marathon stalking” of Dr. SWWNBN, we exchanged emails following one of her races, and I commented on how exhausted she must have been (it was a race in an area of somewhat high weather temperatures)…she replied with her typical humor, but also added that she had “almost quit at mile 4, but then I thought about my MS patients, and I kept running”. This comment caused me great pause.

We have never formally discussed between us MY rationale for “marathon stalking” nor HER rationale for running…and it is unlikely we EVER will. We just don’t “go there” on that level of communication with each other. But I have always sensed Dr. SWWNBN doesn’t simply run to accumulate finisher medals. Among many reasons, I “sense” she runs because I CAN’T…many of her patients CAN’T…and she runs because she CAN.

In this same vein of thinking, I follow her marathon accomplishments closely because I CAN’T run a marathon and I never WILL run a 26.2 mile marathon. Not because I don’t WANT to or aspire to…I CAN’T…and no amount of “pushing” myself, thinking positive thoughts, eating healthy, or Voodoo will EVER make me able to run a full marathon…I HAVE MULTIPLE SCLEROSIS. MS has limited my goals to aspiring to WALK 26.2 blocks…some days, it limits my dreams to simply being able to walk 26.2 yards.

On the days Dr. SWWNBN runs her marathons, I wake myself up (most of these races begin at 7:00AM and occur in places OTHER than Pacific Standard Time!) and concentrate on her run. I imagine the exhilaration I used to feel running through the countryside near my childhood home…I imagine those places along her course where she considers stopping…where the pain or weather or road conditions feel too much to conquer…and I psychically send her positive energy to “keep going”…to keep running…for her, for me, for her patients, for anyone who CAN’T run with her because of various neurological or physical conditions. I send unconscious messages to that part of her being that says, “I CAN, I WILL, I DO”…because she runs for me and her efforts encourage me to go ahead and DO the things I still CAN, while I still CAN…before MS whispers the message, “You WON’T” in my ears.

Dr. SWWNBN may believe I am a crazy stalking patient…as I said, we’ve never HAD that conversation and probably never will. And I won’t argue the fact I AM most likely “crazy” on some level. LOL But I think on another level, we both remain a “fan” of one another…a “fan” who stirs the air and stokes the fire of dreams and desires that burst into flames of accomplishment…a “fan” who quietly, yet firmly tells the other, “You CAN, you WILL, you DO”.

I know I am grateful for her medical skills that HAVE kept me walking during the past two years…for her encouragement and telling me, “You will not surrender to MS”. And each time she runs a marathon, I am reminded of this encouragement…

Well, Hello DALI!

OK...so the graphic I chose for this post borders on highly irreverent and I apologize to any religious, spiritual, devout, Buddhist, Christian, etc., that might take offense. But personally, having followed some of the Dali Lama's teachings for a while, I DO believe his High Holiness would be LAUGHING heartily at my pun/play on words. He IS in Seattle right now as I type, after all. And the sun is shining on a wonderful spring morning...which I believe God, herself, has bestowed upon my Emerald City to light the DL's path for teaching today.

In honor of the DL's arrival in my fair city to participate in a week long conference called, "The Seeds Of Compassion", I am reminded of his words spoken/written on that fateful day in September, 2001...when spiritual leaders from around the world cried out for peace and love and forgiveness (and yes, some of our "spiritual leaders" right here in the United States cried out WAR and ANGER and even stooped so low as to blame "gays" for 9/11?!? I STILL choose to ignore their tongue-wagging) amidst the horrendous erosion of a sense of security we Americans had grown accustom to. The Dali Lama simply asked us ALL to LOVE each other...in the most difficult times...during a time when it was far easier and required much less effort to HATE:


Dear friends around the world.


The events of this day cause every thinking person to stop their daily lives, whatever is going on in them, and to ponder deeply the larger questions of life. We search again for not only the meaning of life, but the purpose of our individual and collective experience as we have created it - and we look earnestly for ways in which we might recreate ourselves anew as a human species, so that we will never treat each other this way again. The hour has come for us to demonstrate at the highest level our most extraordinary thought about Who We Really Are. There are two possible responses to what has occurred today. The first comes from love, the second from fear. If we come from fear we may panic and do things-as individuals and as nations-that could only cause further damage. If we come from love we will find refuge and strength, even as we provide it to others.


This is the moment of your ministry. This is the time of teaching. What you teach at this time, through your every word and action right now, will remain as indelible lessons in the hearts and minds of those whose lives you touch, both now, and for years to come. We will set the course for tomorrow, today.


At this hour. In this moment. Let us seek not to pinpoint blame, but to pinpoint cause. Unless we take this time to look at the cause of our experience, we will never remove ourselves from the experiences it creates. Instead, we will forever live in fear of retribution from those within the human family who feel aggrieved, and, likewise, seek retribution from them.


To us the reasons are clear. We have not learned the most basic human lessons. We have not remembered the most basic human truths. We have not understood the most basic spiritual wisdom. In short, we have not been listening to God, and because we have not, we watch ourselves do ungodly things.


The message we hear from all sources of truth is clear: We are all one. That is a message the human race has largely ignored. Forgetting this truth is the only cause of hatred and war, and the way to remember is simple: Love, this and every moment. If we could love even those who have attacked us, and seek to understand why they have done so, what then would be our response? Yet if we meet negativity with negativity, rage with rage, attack with attack, what then will be the outcome?


These are the questions that are placed before the human race today. They are questions that we have failed to answer for thousands of years. Failure to answer them now could eliminate the need to answer them at all. If we want the beauty of the world that we have co-created to be experienced by our children and our children's children, we will have to become spiritual activists right here, right now, and cause that to happen. We must choose to be at cause in the matter. So, talk with God today. Ask God for help, for counsel and advice, for insight and for strength and for inner peace and for deep wisdom.


Ask God on this day to show us how to show up in the world in a way that will cause the world itself to change. And join all those people around the world who are praying right now, adding your Light to the Light that dispels all fear. That is the challenge that is placed before every thinking person today.


Today the human soul asks the question: What can I do to preserve the beauty and the wonder of our world and to eliminate the anger and hatred-and the disparity that inevitably causes it - in that part of the world which I touch? Please seek to answer that question today, with all the magnificence that is You.


What can you do TODAY...this very moment? A central teaching in most spiritual traditions is: What you wish to experience, provide for another. Look to see, now, what it is you wish to experience - in your own life, and in the world. Then see if there is another for whom you may be the source of that.


If you wish to experience peace, provide peace for another. If you wish to know that you are safe, cause another to know that they are safe. If you wish to better understand seemingly incomprehensible things, help another to better understand. If you wish to heal your own sadness or anger, seek to heal the sadness or anger of another.


Those others are waiting for you now. They are looking to you for guidance, for help, for courage, for strength, for understanding, and for assurance at this hour. Most of all, they are looking to you for love. My religion is very simple. My religion is kindness.

Dalai Lama

Thursday, April 10, 2008

How Do You Mend A Broken Heart...Or A Broken Fingernail, For That Matter?...

I know, I know...you are sitting there reading this wondering how in the HECK am I going to tie THESE two topics together?!? Well, like always...extremely LOOSELY and with great TANGENT! This has, after all, been my day today...loose and tangential.

I spent another day at home from work again trying to recover from "whatever"...I say "whatever" because neither Dr. She Who Will Not Be Named nor I are certain exactly WHICH issue is the culprit behind my aching head/neck/upper back, blurred left eye, fatigue, and cramping in my calves. I DID flip flop (hey! I could be a politician with that term!) my work schedule and suffer through two night shifts right before my Tysabri infusion...and then, there is the Tysabri infusion itself...which CAN cause headache and fatigue. Chicken or the egg? Doesn't really matter..."whatever" the cause, I've been feeling pretty crappy for two days. One can be certain of this "crappy" assessment because I have been SLEEPING/NAPPING repeatedly throughout the days since Tuesday night, which is something I rarely (if ever) do. Fatigue is the bane of my existence when it comes to loathing MS symptoms...it keeps me still and contemplative.


Somehow today, while doing NOTHING and lying about on the couch, I managed to tear the heck out of my right index fingernail...GAAH! I hate it when that happens. And once the tip of the nail is torn, I am destined to catch the darn thing on the tiniest of items and rip the HE!! out of it even further. My usual rescue technique is to take a piece of tape after filing the rough edges and try to plaster the flap of nail back down...I do this EVERY time...and EVERY time it NEVER works completely. Yet, I repeat this process over and over.


Today, as I was also lying about on my couch and admittedly feeling a bit sorry for myself, I did some serious contemplation of my navel lint (layman's terms for meditating on one's life...LOL). For somewhat unconscious reasons, today of all days (probably because I stopped long enough to really THINK about my life), I traveled down the dark and scary road of past and present relationships...of love gone bad (if any "X's" are reading this, of COURSE I am NOT talking about YOU!)...of current friendships and how I "relate" to those around me in my life. I was feeling somewhat "lonely" today for some unconscious reason and I didn't like the initial way this feeling was rolling around in my mind and body.


For some reason, I have always had a keen sense for attracting wonderful friends and a sharper sense of attracting disastrous love relationships. :-) This is not to say I have always found trusting and loyal friendships nor have my significant intimate relationships been completely a wash. There have been friendships that have broken my heart as well as significant loves that have lasted for years. But more recently, it has been my friendships that have sustained me while lovers/partners/mates have fallen by the wayside.


When I was diagnosed with MS in 2003, I was in the middle of ending a 12 year relationship...I just didn't KNOW I was in the middle of ending it. LOL I did not allow myself to think or feel beyond what was comfortable...which was the security of knowing there would always be someone there for me if I needed them. I simply put a piece of "tape" over my heart and carried on...repeatedly "snagging" the beating organ on seemingly mindless things...forgetting to "protect" the break and be gentle with myself (and now you KNOW I've lost my mind, connecting my torn fingernail with THIS topic, eh?!?).


What I discovered today while allowing myself to feel lonely was this: Lonely is just a feeling, but I am not ALONE. Yes, it is true...I DO live "alone" (minus the company of the Devil Kitty) and I sleep single in a double bed (isn't that a Country Western song?!). And there are times when I truly do long for the security and comfort of knowing there is someone "home" for me...someone who has my back...someone who will bring me a sandwich when I am too fatigued/dizzy/stumbling to find my way to the kitchen and make a meal myself...someone who will hold my hand during the petrifying moments of Multiple Sclerosis and assure me I will get through this, too.


I hear many stories from MSers who, due to their diagnosis, struggle to maintain their current significant relationship(s) or feel they have lost a significant relationship due to MS. I certainly would like to blame MY parting of ways after 12 years ON MS, but that's not really true...the relationship had died some time BEFORE the diagnosis...MS just provided the final catalyst/motivation to say good-bye...for BOTH of us.


But I also find it highly interesting (in a lint-in-navel sort of way) I have NOT wanted to seek out another significant relationship since my diagnosis and break up...which I DO blame on my MS! MS has provided me a different "comfort and security"...the ability to place yet another piece of tape over my heart and not RISK breaking it again...even though I know that tape won't hold...even though the "tape" comes with consequences. Such as feeling lonely like today.


Sooo...here's my question to YOU. Do YOU ever use your MS like a piece of tape to either hold something in your life together or create a barrier to keep something/someone out? I know this is a philosophical STRETCH here...but I also sense you are up to the challenge!...check your navel lint and get back to me...

Carnival Of MS Bloggers...

Don't forget to check out the remarkable Lisa E. and her compilation of MS Bloggers at: http://brassandivory.blogspot.com/2008/04/carnival-of-ms-bloggers-8.html . BrainCheese gets an honorable mention, but I think as usual, it's for being a "mouthy cuss"...for which I really DO think I should receive some sort of blogger award!

Wednesday, April 09, 2008

O' For Fux Sake!...

Pardon my French, but I'm irritable at baseline...and when I read STOOPID articles like the one in the picture, I just want to gnaw loose from the tether that keeps me bound to the human race and FLOAT AWAY!

Yes, you guessed it...another HIGH PRICED study funded by the NIH (National Institute of Health) to tell all of us with Multiple Sclerosis (or any OTHER disease...I mean the so called "research" can apply to ANYTHING!) that if we just "increase our positive experiences" our MS will be MUCH more tolerable. No indication here that ANYONE has been spending those high-priced and fought after government dollars (which DO come from my effing taxes, by the way) to delve into a friggin' CURE for MS! Why heck no...that's MUCH harder to research than silly CRAP LIKE THIS:


Now, researchers from two universities have found that people with MS who increase positive experiences decrease their symptoms of depression and improve the overall quality of their lives.


As part of an ongoing NIH-funded study of people with MS, Alexa Stuifbergen, professor of nursing and associate dean of research at The University of Texas at Austin, and Lorraine Phillips, assistant professor in the University of Missouri Sinclair School of Nursing, determined the extent to which positive experiences influenced the health of people with MS. The researchers found that a higher number of positive experiences was associated with fewer symptoms of depression, fewer functional limitations, and better quality of life in people with MS.


"Positive experiences significantly affected the participants' perceptions of the quality of their lives and symptoms of depression, even when taking into account age, education and disease-related factors, such as mobility, vision and cognition," Phillips said. "People with MS typically rate the quality of their lives lower than that of the general population, so it is important for people with MS and clinicians involved in their care to understand what factors may improve the quality of their lives."


Study participants recorded the frequency of positive experiences in their lives, such as "I said 'thank you' and meant it," "I said something pleasant to someone who didn't expect it," and "I exercised and felt good about doing it." Phillips found that study participants who reported a higher number of positive experiences also reported having lower levels of symptoms of depression.


"By incorporating positive experiences or behaviors into their lives, people with MS may be able to limit the additional risks and costs of medical treatments for depression. Most of these positive activities are extremely simple to perform and readily available." Phillips said. "Health care providers should encourage people with MS to participate in positive activities every day. Previous research found that people with MS benefit more from frequent smaller activities like smelling fresh flowers, talking with neighbors or writing letters, than they do from larger activities like taking a week-long vacation or buying an expensive outfit that they can only do once in awhile."


The study, "The Influence of Positive Experiences on Depression and Quality of Life in Persons with Multiple Sclerosis," was published in the March 2008 issue of The Journal of Holistic Nursing.


"The current study was prompted by a suggestion from one of the participants in the NIH-funded study. She helped us to develop the survey, which has 35 items that describe activities that could improve mental or physical health," Phillips said. "That's the beauty of this tool. These activities can be adopted by people with other chronic illnesses."


Well, I guess with my crappy attitude/lack of "positive experience" about THIS latest load of fecal festive research, I should be wheel chair bound in NO TIME...at least according to the research statistics. I simply cannot BELIEVE we as a nation are spending MONEY on things like this...money that certainly could have been better spent toward improving the "positive experience" of an MSer who can't afford their medications (Hey LISA E. ...maybe we can apply for a grant from the NIH to get YOUR MS medications paid for, thus furthering the theory proposed above?!? Let's talk...)


Must go medicate now...I've given myself a headache BANGING MY HEAD ON THE DESK REPEATEDLY in a fitful self reality check. Yep, I really AM awake and reading this...

Those Canucks...

I want to blame Shauna , but I REALLY should blame Shawna for this post!...those wacky Canadian MS Bloggers who are spreading the "tag" of "What's On Your Desktop?" Sorry, kids...my desktop is quite boring with MANY unused icons because I'm too lazy to delete them:

But, if I pan out from my actual screen, there is something far more sinister and interesting LURKING nearby...The P.O.D. on her "throne":




Stayin' Alive...

Ah, ah, ah, ah, stayin' a-LIE HIGH E I E IVE...Oh, brings back such memories...but I digress as usual.

Yes, I AM staying alive following my Tysabri infusion yesterday...I'm sure much to the chagrin of Dr. She Who Will Not Be Named (who I secretly believe HAS tried to kill me in the past!). My infusion went off without a hitch, which was the good part. I had a friend with me, who is also named as my Power Of Attorney on my Health Care Advanced Directive...I instructed her, first signs of hives or difficulty breathing, she needed to jump up and move the exam table in front of the door and not let anyone in...I've lived a good life...no need to resuscitate me BACK from the dead and be warehoused in a "facility"! LOL Actually, she really WAS there just in case something "went wrong", but not necessarily there to assist in my demise. I realized after my stupor last time following my 4th Tysabri infusion, I might NEED someone there to speak for me if I couldn't. Fortunately, my OWN tongue never stopped flapping the entire time I was there. :-)


I don't recall Tysabri giving me such a headache, stiff neck, and joint pain like I am having today. I've been taking Ibuprofen with some relief, but still feeling fairly miserable...Dr. SWWNBN doesn't seem too concerned about my current plight, so I assume this, too, shall pass. I'm really very tired, but I can't even blame all of THAT on Tysabri either...having worked two over night shifts this week "could" also be feeding the frenzied fatigue monster. Time will tell...


I don't have much else to report and really should go back to bed to rest...I just wanted to leave an update here and to say THANK YOU for ALL of the wonderful well-wishes and messages left here from all y'all! Your kindness always uplifts me...it is such a great blessing to know there are many of you sending lots of positive energy my way...many of you in far worse situations than mine and still, you wish me well.


Thank you, peeps...I imagine I'll be "STAYIN' ALIVE" for some time to come...

Tuesday, April 08, 2008

Just Something I Do...

One of my MANY unusual behaviors I engage in whenever going on vacation, beginning a difficult work week, just plain stressed, OR heading in for an infusion of medication that "could" render me stuporous, is to clean. I imagine it's sort of like NESTING...that peculiar behavior pregnant/expectant mothers do right before they are about to deliver their child (they prepare their "nest" for the baby, which can include cleaning, sewing, organizing, etc.).

My "nesting" pattern is more a ritual powered by potential embarrassment, however. I can still hear the faint voice of my mother saying, "You kids clean up your rooms before we go (on vacation). If something happens to us and we don't make it back home (and she meant EVER...as in dead!), I don't want the neighbors coming in here and finding a mess." Ah...another Pegism...


I believe I've had a total of somewhere around 8-9 hours of sleep since Saturday morning at 8:30AM...that is the last night I slept during NORMAL hours in my own bed. The joys of working two night shifts in a row. And today, there was no time to sleep either once I arrived home around 9:30AM...I had to CLEAN! I go in for my Tysabri infusion tomorrow after all...LOL


My bathroom is now cleaner than my person. Seriously. You could eat off my floor AND I'm considering doing just that...or just eat something wherever I collapse. Maybe I'll make a bit of punch in the toilet bowl. I think I'm getting a bit delirious from lack of sleep...what do YOU think???


Well, if for some reason I don't "make it home" tomorrow from my infusion, I'm not worried about the neighbors coming in and finding a "mess"...unless the Princess O' Darkness trashes out the place while I attempt to get some quality sleep tonight.


And IF for some reason I don't "make it home" tomorrow after my infusion...well...it's been nice knowing you! Please feel free to come on into my home and admire the shine...

Saturday, April 05, 2008

When We Don't Agree...Entirely...

Stuart, over at Stu's Views And MS News, has kindly asked me TWICE if I would post-a-post he has written about his personal experience when stopping his DMD (Disease Modifying Drug) he takes for MS. Here's a link to his post: My Hiatus From My MS Medication--Pros and Cons .

I have thought long and hard (which is quite a feat for me to accomplish these days) WHY I did not immediately respond to his request to post-a-post when he first emailed me to ask this. I DID, after all, click the link in his email to READ his post. And then he emailed me again today with the request...and still I dragged my feet.

I have reread Stu's post several times now trying to decipher what it is that "troubles" me. It is certainly NOT Stuart or his experience...but something kept nagging at me in the back of my noggin, saying, "You don't necessarily agree"...and I couldn't quite put my finger on exactly WHAT I "didn't necessarily agree" upon. Stuart writes a very telling tale of his OWN experience...what was I getting hung up about???

Sooooo...at the risk of pi$$ing off the entire MS Community (and I DO hope you do not take offense in my using of YOUR well-written post, Stuart, as my spring board for THIS post) and receiving MS Hate Email from the "Society", the big PHARMA companies, and anyone with major STOCK investments in the DMD's...I will attempt to address my "you don't necessarily agree" ideas. But first, I must tell you the FABLE of my experience with the DMD's (although I may have difficulty working in a rabbit, a tortoise, and a cow!). I WILL try to keep it short and succinct, adding "blahty blah" when necessary:

I was diagnosed with Multiple Sclerosis on TAX DAY, April 15th, 2003 (Yes...your math is correct. My MS anniversary is just around the bend, so please send all cards and flowers NOW if you expect them to arrive on time! LOL). I was diagnosed after what had become a typical bout of pain in my upper, left arm/neck/torso...something I had been experiencing at LEAST five years off and on prior to diagnosis.

I got an opinion, then a second opinion, and a third opinion (it takes me a few tries before I'll believe ANYTHING!)...the third opinion, from a leading MS neurologist in the field. She followed the guidelines of the MS Society, the ECTRIMS, and the AAN...all the "neuro bigwig" organizations...who were (and still do) recommend starting one of the disease modifying MS drugs immediately. And I was scared $h!+less, so of COURSE, I complied with her treatment guidelines. I began Copaxone June 3, 2003. (**Writer's note: You may be wondering how in the heck I KNOW the exact date I started Copaxone? Copious note taking, my deary! An MS Symptoms Journal I have kept from diagnosis forward**)

So...blahty blahty blah...months passed. I, OF COURSE, experienced the Copaxone-I-Think-I'm-Having-A-HEART-ATTACK reaction...three months into using the medication...certainly NOT typical timing, but I'm "not typical" (I'm not even "normal" as you have already figured out). And then there was the bruising and hard lumps under my flesh...and STILL, I shoved that needle in me religiously. I developed a runny nose and seemed to catch a cold every two weeks or so. My NATIONALLY KNOWN NEUROLOGIST at the time told me these symptoms were "just the cold season" and had nothing to do with Copaxone...I believed her...sort of. Oh, and I also had a relapse while on the Copaxone.

Finally in February, 2004, I convinced my NATIONALLY KNOWN NEUROLOGIST to just "check" inside my noggin...I didn't feel right...and frankly, couldn't take feeling SICK every two weeks or so (which I NOW believe really was caused by the Copaxone because I have never experienced that "cold season" again). As I suspected, my 3rd MRI of my lifetime showed new lesion development...this was certainly NOT a good thing...to Martha Stewart OR my NATIONALLY KNOWN NEUROLOGIST (why do I keep highlighting that? Because I was allegedly SEEING one of the best neuro's in the field of MS...which I later found out are about a dime a dozen. LOL).

I chose Copaxone as my initial "drug of choice" because of the alleged less likelihood of serious side effects. At the time (and, as I type this), the original 4 injectable DMD's all carried with them the probability of slowing my MS progression somewhere around 33%...if you read the fine print of the studies conducted. 33% seemed better than 0%, so I opted IN. Now that it was deemed Copaxone was not making that "33% guesstimate" marker, my NKN (see above...too tired to type out that all caps title for my neuro at the time) decided it was time for bigger guns...INTERFERONS. Which ONE did I want to try?

Well gee...I'm no dummy! The thought of having to give myself an injection 3x's a week versus ONCE a week was an easy choice. And besides, I'm a nurse...if I could stick a needle deep into the muscle of an unsuspecting patient, I could surely do the same to my OWN thigh?!? I started Avonex May 27, 2004...the once-a-week-intermuscular-injection versus the three-times-a-week-subcutaneous-injection INTERFERON. I proceeded to have a major relapse JUNE, 2004.

I'm not going to pull any punches here...AVONEX WAS A BEAUCH FOR ME TO TAKE! There...I said it. I absolutely HATED this drug and yet, to date, it has been the ONLY drug that has shown a decrease in enhancing lesions in my pea brain over time (Tysabri excluded...I wasn't on it long enough to measure). I tried the Ibuprofen, Tylenol, icing the site...nearly ALL of the suggested remedies for the injection pain and subsequent "flu-like" symptoms following Interferon dosing. I was titrated UP to a full dose of Avonex...and I was titrated DOWN to a 1/2 dose, then a 3/4 dose of the drug until September 2005.

At first, the flu-like side effects lasted only 24 hours...and as the year progressed, this time expanded to 48 hours, then 72 hours. I was experiencing "shot flu" almost as many days as I was experiencing "normal living". I did the math again...at even TWO days a week times 52 weeks a year, I was spending a minimum of ONE HUNDRED AND FOUR DAYS FEELING LIKE HAMMERED $h!+ a year...this was once again "not a good thing" in my eyes. The "cure" (**Editor's note: To date, there IS no cure for MS...I use the term loosely and with tongue in cheek**) was worse than the disease itself. And even though my MRI gave an "all clear" reading while on the Avonex, I STILL had a major relapse and wound up in a hospital for 3 days while on the drug. Finally by the summer of 2005, I began running 100-103 degree fevers 12 hours following my injection...I could no longer function for up to 3 days out of my week, so I STOPPED THE AVONEX and THEN called my NKN.

It was decided by my NKN that "perhaps" Interferon (although picture-perfect on MRI) was not a drug of choice for me after all...I had developed the "sickness" you will only hear whispered about in the corners of MS chat rooms. To my knowledge to date, there is no official title given to this phenomenon of symptomology...I didn't develop antibodies to the Interferon...my body simply rejected it all on its own. Thermometers in doctor's offices (nor mine at home) don't lie...103 fevers are a bit much to suffer through for 1-3 days! Not to mention the pseudo-exacerbation of symptoms that coincide with high fevers...and the muscle aches/pains of "flu-like" symptoms. I suppose it was the near delirium while staying at a friend's house on one of the islands that finally convinced me I could no longer keep taking this medication...no matter WHAT my NKN said to me.

"What now, brown cow?" you may be asking (or you've already stopped reading...to which I salute your swift decision making process!). Interferon = Betaseron and Rebif...the last of the injectables available. In waltzes RITUXAN STUDY!!!! Yep, I opted to be a guinea pig. In November, 2005, I received two IV doses of "SOMETHING" (and you know, to this DAY, those bastids have NEVER contacted me to inform me exactly "what" I got in those unmarked IV bags!). I developed a metalic taste in my mouth, got moderate to severe gastritis, and began experiencing severe hypertension. Rituxan? Who knows...(except the big PHARMA company that conducted the study, that's who!).

I was followed for months with blood draws, MRI's and EDSS tests to determine (if I really DID get the drug) what effect it was having on my now labeled "aggressive" MS. I stayed in the RITUXAN study with my NKN, but I changed NKN to a NEW NKN in February 2006...for several reasons, but mainly my impatience with the clinic/hospital system my first NKN worked in...thus beginning my precarious hop down the path of MS with Dr. She Who Will Not Be Named.

In March and April of 2006, I had yet another severe relapse. Dr. SWWNBN had an "in" with my prior NKN, so they "talked amongst themselves"...on my April 2006 MRI for the Rituxan Study, I was advised behind closed door and without the PHARMA company's knowledge, that I needed to exit the Rituxan Study and get on another disease modifying drug as soon as possible...my MRI showed more development of new lesions and I was losing some of my functioning...I now had a diagnosis of "aggressive MS"...whatever the heck THAT meant! Dr. SWWNBN heeded NKN warning and scanned me AGAIN! My choices were now Novantrone, monthly Solumedrol, Rebif, or Tysabri...the latter STILL being OFF MARKET due to some "issues" under investigation by the FDA.

Novantrone? Nope...that's chemo and has a lifetime limit. Saving that one for later. Monthly IV Soly? Nope...that stuff was working less and less when I took it for RELAPSE! I didn't have high hopes it would do much on a monthly basis for my out of control brain. Rebif? I had to explain to Dr. SWWNBN once again the severe symptoms I had developed while on the "other" Interferon...I'd much rather have had a daily COLONIC than go through THAT again! Tysabri? It was being whispered the FDA "might" bring it back to market as early as August 2006. I decided to wait and throw my hat in the ring for the Tysabri...this was ONLY a few months away after all.

In the meantime, I experienced yet ANOTHER relapse of significance in the summer...wound up in an ER, etc. I also tried accupuncture, a gluten-free diet, and a few other "natural" remedies during the prior two years...my life had boiled down to an "aggressive case of MS" with increasing neurological dysfunction...and, I was still working full-time (and remain gainfully employed to this day).

In August, 2006, I received my first of four doses of TYSABRI. I felt really good while on the Tysabri...my neurological functioning seemed to be returning and I stabilized dramatically. My EDSS scale numbers decreased and I was sure I had finally found the "DRUG FOR ME". Until my fourth dose, that is. In November 2006, while being infused with my liquid gold, I became stuporous, developed a rash-like redness around my neck, and my ankles developed red spots suspiciously looking like hives. I was immediately given a bolus (big dose) of IV Benadryl, Solumedrol, and some epinephrine, while Dr. SWWNBN and my infusion nurse stood around ringing their hands. I DID recover, but Dr SWWNBN did not want to take any chances and risk a full anaphylactic response (throat closing and dying from being unable to breathe...I suppose I should THANK her for THIS decision?!?), so she yanked me off the Tysabri, gave me a "wash out" period of three months, and INSISTED I go on Novantrone.

I started Novantrone in February, 2007 (However, not before landing in the hospital AGAIN with another severe relapse and receiving five doses of IVIg...which...did nothing to affect my course of MS). 2007 was initially a very good year for my MS while on the Novantrone. It seemed to halt my relapses and my MRI's were once again "clear"...until September, 2007. I was hit with ANOTHER relapse, followed by relapse, followed by relapse. It seemed the Novantrone could no longer "hold" me the full 3 months inbetween doses. I had my last dose of Novantrone December 28, 2007...and began my most recent relapse in February, 2008...6 weeks prior to my next dosing of Novantrone. IT WASN'T WORKING ANYMORE.

I met with Dr. SWWNBN on February 14th of this year (one day following my car accident and 4 days preceeding development of my "adenovirus" that I thought might surely kill me! LOL) and discussed with her my idea I really WASN'T getting much benefit any more from the Novantrone and, "What about trying Tysabri again?" She couldn't deny my symptoms or my neuro exam and agreed. This was followed by another MRI (now about 20 total since 2003), which solidified my belief...my MS was once again "active" and "aggressive"...my head lit up like an airport runway on a dark night.

Soooo...I'm now scheduled to restart Tysabri in 3 days. I want to believe THIS time all will go well and THIS time I will have finally found something to slow down the smoldering flames in my head (and not KILL me in the process!). But as you can see from reading the above, I have reason to be skeptical. NOTHING has proven effective for my BRAND OF MS to date.

I DO believe in the value of Western Medicine...don't get me wrong. But I cannot, in good faith, postulate for YOU whether or not the DMD's will be of any value whatsoever OR whether or not, should you take a medicine hiatus, this will make you susceptible to a relapse any more than growing hair on your palms. I can ONLY share with you my arduous experience with these drugs and "hope" there might be something of value for you in MY experience.

THIS is the notion I struggle with when reading other MSers experiences that seem to draw conclusions for the masses...and I am NOT saying that is what Stu's post does/did either! I AM saying I will and do have great difficulty supporting anyone who believes they have found the "fountain of youth" (so to speak) when it comes to MS treatment(s).

We, MSers, are all uniquely different, yet we share a similar diagnosis. But even within that blanket diagnosis, lies a vast pool of unknowns for how each of us will respond (or not) to the current available treatments. What may work for ME, may or may not work for YOU...and I can only share with you MY experience. Some MSers LOVE Avonex and are doing well on it...I simply am/was NOT one of them. That doesn't mean the drug is wrong/bad/ineffective...it only means it was wrong/bad/ineffective for ME and my UNIQUE BRAND OF MS.

Your "brand" is also unique...and I encourage you to explore all of your options in finding something that works for YOU. And, after researching your options, you may even choose to DO NOTHING...I respect this decision as well. You, my friend, are your best NATIONALLY KNOWN NEUROLOGIST when it comes to your own central nervous system...listen to yourself...and choose wisely.

And THIS ends the fable of "BrainCheese in Blunderland"...

Friday, April 04, 2008

Sleep, Eat, Go To Work...Sleep, Eat, Go to Work...

Guess there's not much more to say beyond the title of this post? That has pretty much been my life these past two weeks...with an occasional detour into "Go to an appointment, Teach a new employee orientation class(s), Sleep, Eat, Go to work". My "GoogleReader" is jam-packed FULL of blog posts all y'all have written that I have been unable to find sufficient time in my schedule to peruse...sigh...

The worst part of this (if one can compare having a needle shoved in their eye to having a hole drilled into their skull) is, IT AIN'T OVER YET! Yes, I am off work today...but I am so exhausted from the perils of my schedule, I can barely find the mental dexterity to type THIS silly post. I have a "photo shoot" in the early morning tomorrow (Saturday) that I will be assisting with...this is to take stills for the statewide safety training DVD's (a committee I have attended for several months) that are being produced for Washington State. Then, I will try to come home, "attempt" to sleep some more, and head BACK into work for a grueling overnight shift Saturday at 11:00PM...but it's STILL not over. I turn around on Sunday evening and do ANOTHER overnight shift! I imagine by the time Monday morning at 9:00AM rolls around, I will be WELCOMING having a needle jammed in my eye or a hole drilled into my skull...


On Tuesday of next week, I am "allegedly" scheduled to receive my re-start dose of Tysabri. So far, it appears as if all is in order...but there's always that last ditch chance "something" will not be in place. I realized today during my brief moment to lie about and drool/rest that I am somewhat ambivalent about starting Tysabri again...not because I have any major fears of the drug itself (although there IS that question of whether or not I might have an anaphylactic reaction again)...but because I am pensive/worried "WHAT IF?"


What if Tysabri fails to slow my MS just like all of the other medications I have taken? And trust me, I've BEEN on all of them, except Rebif and Betaferon. And the reason I've not been on the prior mentioned drugs is because I had such a bad time with Avonex, their close Interferon cousin. Tysabri, at this point in the MS game, is the last "savior" available to me...at least until Jeri's FTY720 gets approval or some other medication hiding in the FDA's medicine cabinet comes to light. I'm not sure I want to KNOW if Tysabri will work or not...I kind of want to PRETEND there's still something out there that's going to shut off the gadolinium lights in my head...seriously.


I realized today I have been silently "processing" these ideas behind the scenes in my mind while still managing to whirl through my impossible schedule these past two weeks. In other words, without THINKING about it consciously, I've still been "thinking" about it. And the more I became aware I was "thinking" about it, the more I tried to block it out of my mind by keeping busy...what an effed up cycle THAT can become...LOL I have managed to cut off all contact with Dr. She Who Will Not Be Named (because she's just a reminder to "think" about it!) these past two weeks, lower my head like a ram, and BUTT my way through my schedule...of course, not without consequence. I am STILL having balance issues and pain/numbness in my left leg as well as waking up with a very painful and stiff right shoulder...to which I exclaimed out loud (when I had difficulty turning my head from side to side due to sharp pains created in my shoulder), "Oh, for the love of GOD! What now?!?!" Today, I am so tired that I find myself being quite content just sitting for hours in my living room and staring at the rain falling on the windows!


It's a strange place to find myself...being fearful of trying something because I'm afraid it might not work...and then, having to possibly deal with another major loss and more unknowns. But I imagine I'm not alone in this feeling/place of thinking...or AM I?...