Sunday, November 30, 2008

It's A PAINFUL Topic...

I'm going to take a limp down Memory Lame (no, that's NOT a misspelling) for a moment in an attempt to set the stage for what I hope to be one or two posts about pain with Multiple Sclerosis. This is a topic that gets far too little attention as a primary MS symptom, yet it is estimated over 50% of the MS population experiences primary or secondary neurological pain during the course of their disease process. And PAIN is the reason I was diagnosed with MS.

So, do do do do**lines begin to blur**do do do doo**taking you back in time, now almost 10 years...

In 1998, at age 33, I was attempting to hang a curtain rod in my home while standing on a short step stool...I'm handy that way with power tools and the task was only a minor accomplishment, considering I had just completed a home "make over" in the house I was living. Suddenly, and without warning, I fell backwards like a tree crashing in the forest. I had no idea why this occurred, but assumed maybe somehow I had simply slipped off the step stool. Later in the afternoon, I had climbed a short tree over our garage with electric chain saw in hand (I'm telling you, I USED to be very handy with the power tools! LOL), and proceeded to do some necessary trimming. I was only up in the tree about 8 feet off the ground, when suddenly (just like with the curtain rod incident) I tumbled backwards out of the tree onto my back. The jolt of the event put me in an immediate state of shock as I managed to somehow let go of the chain saw, which automatically killed its power and saved amputation of an appendage. I sat high above the drive way on a rock wall briefly, then jumped down like a rock star from a 10 foot embankment, only to discover I had injured my leg in the not so graceful exit from the tree and the stupidity of my leap.

A few weeks later, I developed a strange "dizziness and buzzing" in my head...I felt dizzy all the time...even when I was presumably asleep. I thought perhaps I had hit my head in one of my two falls, but decided to seek a doctor's advise because the dizziness/buzzing was causing me to feel awful. A doctor diagnosed me with an inner ear disorder called, "labyrinthitis"...I was given some pills and told the condition may or may not go away. It eventually did after about 3 more weeks of nauseating dizziness.

A few months passed from my falls and my alleged inner ear disorder. I was standing at my nursing supervisor job about to make rounds in the hospital, when I decided to reach down and fill a small cup with water from the dispenser in my office. As I turned my head and twisted sideways to push the button for water, a jolt of excruciating electrical pain shot up through my neck and into my head. The pain was so intense, I am told I dropped the cup, tried to grab hold of a chair, and proceeded to pass out on the floor, hitting my head on the way down. When I came to, I could hear the sirens of the medics approaching and saw the 10 or so staff gathered around me in concern...all nurses with their dangling stethoscopes waiting to be used. Of course I refused to be transported by the medics to the ER (it's a life long saga of stubbornness) and opted to have my friend take me to my primary care doctor's office instead...my blood pressure was extremely elevated and I still had fairly severe pain in my neck.

Through a few series of tests to rule out "stuff" and an MRI to rule IN "stuff", I was told in 1998 that the pain in my neck and shoulder was originating in my cervical spine, where I had developed two to three herniated disks. I was placed on Prednisone for the first time and sent to physical therapy. Eventually the pain in my neck/shoulder/and arm lessened then went away. I was told I most likely herniated my cervical disks when I fell out of the tree (but I had fallen MANY more times playing basketball in college and had several concussions before the age of 25!). I also have a brain scan done at the time of this MRI and it appeared to be a normal, pinheaded brain.


Over the course of nearly 5 years, I suffered from back pain/neck pain/shoulder pain/trunk pain nearly every 4 -6 months and was often put on high dose Prednisone, other anti-inflammatories, analgesics, and an assortment of VooDoo medicines...I would have periods of relief for several weeks, followed by a roaming return of pain, sometimes so severe I could not walk. I recall once being practically carried into the Urgent Care Clinic because I could not stand without pain shooting from my lower back and hips down into my legs. Needless to say, I received a variety of diagnoses and treatments - from psychiatric related trauma to radiculopathy to iatrogenic pain caused by medications to menstrual disorder to disk herniation/bulges. Physical therapy often only seemed to heighten my pain response versus relieve it and Prednisone seemed to be the only thing that brought consistent relieve...temporarily.


I missed several blocks of work due to pain. I became sometimes severely depressed due to my pain. I bought into the notion "perhaps it was all in my head". I began to have more periods of dysfunction than functional body times. I thought I was growing *old* way too fast and could find no explanation the medical community would accept as a rationale for being in nearly constant pain. I finally chose to simply quietly live with my pain so as not to be labeled a "nut job". This only made me hurt worse during these episodes and emotionally I would become a basket case. There was, after all, no LOGICAL medical explanation for my recurring pain episodes that could be found.


In the Winter of January, 2003, my house was burglarized, my car engine began blowing the blue smoke of Death, and I started having what I KNEW were gallbladder attacks. I also developed the familiar burning, yet cold pain ache down my left arm...it was not a great start to a new year! Since I knew there was NOTHING medicine could or would do for my arm pain, I focused on police reports, buying a new car, and an ER trip for IV demerol for my gallbladder attacks...I was familiar with gallbladder pain as my entire family had already had theirs removed (the dead relatives, too), so I consented to the ultrasound test to look under my hood at my bile sack. The test was immediately forwarded to a surgeon and I was told to come in immediately, scheduling an urgent cholecystectomy the next day...this was March 18th. I made a sheepish mention of the pain I was experiencing AGAIN in my left shoulder and neck and let my surgeon know I was once again on Prednisone for this. She ordered IV steroids during the surgery to compensate and keep me from having withdrawal.


The 24 - 48 hours after my surgery were the most pain-free hours my shoulder/arm/neck had experienced in a very long time...of course, the pain in my abdomen from being punctured and cut open was present, but I was absolutely AMAZED at the relief I experienced in my left side. This of course subsided after 2 days and the pain returned. I was left to recuperate at home, with abdominal incisions, and walking around with my left arm bend high above my head as the only means of finding some relief to the now severe pain I felt radiating down my arm.


On a follow up visit to my ARNP, she decided maybe it was time for another MRI...since it had been five years since my first one and my degenerative disk disease diagnosis, I consented. I went to the hospital and got shoved back in the "tube". My original MRI was without contrast (gadolinium) because I hand carried the order to the technician. What should have been a 1/2 hour procedure to film my cervical spine turned into a 2 hour MRI investigation...I was suspicious. I repeatedly asked the technician WHY they were adding contrast to my order and WHY they were snapping shots of my brain (because they brought out the *coil*, used only for cranial views)...the silence was deafening.


That evening, I discovered a somewhat cryptic message on my answering machine from my ARNP...she needed to speak with me immediately...nothing to "worry" about, just leave her a message when she could reach me as soon as possible. I didn't leave a message. I didn't want to know. I was certain I must have a cancerous brain tumor growing in my noggin because you NEVER receive a phone call about a medical test within 24 hours unless there is something "wrong".


Eventually, she caught up with me via phone. "They think you have Multiple Sclerosis, but don't worry too much. They could be wrong. They found a large lesion in your spine and several others in your brain. I want you to see Dr. So And So, neurologist for a consult. I've got you an appointment already scheduled in 4 days."


And from here, my story doesn't change much from the typical "You've got MS" story...I DID consult THREE neurologists before believing any of them. LOL I argued I had never had any symptoms of MS that I could remember, only PAIN...and everything I had ever studied or read said PAIN was not considered a SYMPTOM of Multiple Sclerosis. In fact, 15 years prior to my diagnosis, PAIN could not be considered a diagnostic symptom of MS. Looking back over the 5 years prior to my diagnosis, it was thought my "labyrinthitis" was most likely a case of bad vertigo, my bowel issues most likely the cause of my spinal lesion (or IBS...jury is still out on this one), and my lethargy/fatigue was NOT because of depressive signs and symptoms.


This is MY MS story and MY MS pain tale...certainly, others will and do tell a different story because MS affects us all individually. Hopefully I will find the time this week to do some research (with links) about the causes of what are thought to be TWO, distinct forms of MS pain: Primary neurogenic pain (originating pain from demylenated nerves and nerve roots) and secondary symptom pain (resulting from spasticity, gait changes, etc.). I'll try to keep this information as "pain-free" a read and simplified as possible...wouldn't want to be the cause of trigger for someone to develop OPTIC NEURITIS from reading a computer screen!...


Saturday, November 29, 2008

DAYUM! That Hurts!!!...(Subtitled, "MS Pain")

Yesterday evening (or early this morning to most people), I went to bed at my semi-normal time of 1:30AM. I had not been feeling the best on Friday throughout the afternoon and evening, but chalked my "unwell" up to eating some wheat products on Thursday (still doing my veggie detox diet mostly) and thinking I was developing a head cold. I was also strapped to a chair like a hostage for nearly 9 1/2 hours at work, so my bodily aches and pains that developed "could" be attributed to this. Anyway, these were my rationales when it was time to lay me down to sleep.

I switched up my bedtime doses of medications a bit due to the increased joint/muscle pain I was experiencing, taking two Zanflex instead of one, not taking a Baclofen, and also popping my usual Diclofenac and Klonopin for good measure...yeah, I know. Sounds like a lot of drugs, but they DO seem to help me sleep through the night without frequent waking from pain. And sleep is far more important to me than what anyone thinks about my prescription drug use...LOL.


Around 5:00AM, I awoke with what I can only describe as heart attack pain in my right calf and upper thigh...at least it FELT as serious as a heart attack! My leg had contracted up to my waist and I could not straighten it. The intensity of the pain caused me to want to yell out, as tears started free-falling on my face, and I had to remind myself to keep breathing, lest I pass out from the pain. This lasted a good 10 - 20 minutes, but FELT like hours. Eventually, I was able to massage my calf into some relief of the spasm and remove my knee from the back of my throat (OK, THAT is an exaggeration, but I think you know what I mean!). This was some of the most intense and excruciating pain I have felt in a while.


Needless to say, I was NOT able to return to sleep, and instead got up and limped to the bathroom and began my day...gingerly stepping down on my right leg because it felt (and continues to feel) like it could surprise attack me again without notice. Later in the morning, I emailed my Internet Neurologist for maximum dosage levels for Baclofen, and I have begun taking this drug round the clock in hopes of warding off another attack...My right forearm and wrist ALSO feel like they want to get in on the action, so I'm literally typing with one hand...laying down with a laptop is the "bomb".


Our good friend, Harkoo, way out there in the land of Maine, had emailed me just yesterday talking about MS pain...I told her that perhaps I should write a post about the phenomenon because pain WAS the initial diagnostic symptom that brought home the present of a MS diagnosis for me...and pain CONTINUES to be a primary factor in my personal brand of MS. After last night's experience and the aftermath today, I can only say, "Harkoo...I'll get right on that!"


Unfortunately today, it has taken me almost an hour just to type this much using only my left hand, so my *Pain Post* will have to wait until another day...so consider this brief installment PART 1 of things to come.


And as for me, I'll just be right here on my couch if y'all need me for anything...right here trying to vie for space between myself and the cat...she shows no mercy when it comes to nap time...

Friday, November 28, 2008

MUST I Be Happy, Merry, Holly OR Jolly This Time Of Year?!?

I didn't write a *Thanksgiving* post...after glancing at my GoogleReader (but unfortunately NOT having sit down time to truly READ some wonderful MS blogger posts...sigh), it appeared y'all had that topic covered. And besides...you KNOW me...I'm not one for writing *traditional* posts. Unless they contain some sort of jolt at the end or the word "poo" in them. I think it is apparent, BRAINCHEESE LOVES to talk about bodily functions. LOL

In the United States, our *traditional Thanksgiving* day holiday has barely come to a close and ALREADY absolutely EVERYTHING I see and read is about Christmas...well, for the Christians, that is. It amuses me to no end when I hear the term "Black Friday" used to describe the absolute horror of glutony *we* Americans engage in the day AFTER Thanksgiving, all in the name of *Christmas*. (Does anyone ELSE see a problem here? When people are in total disregard of their fellow man, trampling them sometimes to the extent of injury, JUST to be first for a consumer bargain of CRAP they probably don't need anyway?!?) I imagine somewhere in the Jewish population, there's been a switch to Hanukkah. And, since *we* really only RECOGNIZE two religions in this country, I suspect the collective *we* thinks *we* have this time of year covered.


Here's the thing. It irritates me when people wish me a "Merry Christmas", making the assumption I celebrate their same tradition/religion. It irritates me when I walk into a store and hear religious Christmas music blaring loudly in the background and I note half the shopping population is dressed in *traditional Muslim* garb, uncomfortably looking around...I imagine it irritates THEM, too! It irritates me when my ears are bombarded with, "Oh, Come All Ye Faithful", music when I'm staring down Christmas Land Santa's Place, where children are lined up to get their pictures taken with some dude who's probable only line of work he can find in this economy is SITTING IN AN OVER-SIZED CHAIR WITH SQUIRMING CHILDREN WHILE PRETENDING TO SMILE FOR A $50.00 OVER-PRICED PORTRAIT! And it REALLY irritates me when I drive by someones home who has both a Nativity Scene neatly lighted in their yard with a blow up SANTA CLAUS on their roof!!!!!! Can *we* please keep our MYTHS and RELIGIONS separate?!? Pick a team already, for...well...Christ's sake!!!


"Ah," so you say to yourself. "BRAINCHEESE is a Scrooge (or anti-Christ, or Atheist, or smoking crack...pick one)."


Oh, quite the contrary, dear reader...quite the contrary. I just don't like being TOLD I have to be merry or happy this time of year. That comes naturally for me. Just like I don't have to have a huge, sickening feast on Thanksgiving to be grateful for all that I have. I generally feel "merry AND happy" all year long...and I don't just reserve *traditional Christmas time* to give gifts or donate to charities. As a matter of fact, I tend to DECREASE my charitable giving during the winter season, choosing to spend my monies and time during those "other" times of year people are less giving...during those times of year the needy are STILL in need...not just at *Christmas*.


It IS true...I DO make a truckload of Grandma Goldie's Holiday Snack Mix for the many work minions I share time with...I oddly, ENJOY this, which is more about honoring the traditions of my Grandmother than honoring a holiday season. And I DO send my niece and nephew gifts in honor of THEIR celebration this time of year. And I DO give an assortment of other items/foods/small donations to friends and acquaintances who celebrate BOTH Christmas and Hanukkah...because I certainly don't want to offend or discount THEIR traditions.


But please...for the love of all things Holy...STOP insisting I somehow be "Merry, Happy, or filled with Joy" this time of year. It's really stealing my inner peace...LOL

Thursday, November 27, 2008

Smoke Detectors Get The Day Off...

WooHoo!!! There will be no annual kitchen fire in the hut this year for Thanksgiving. That's right. I've been invited "out" at dear friend, Tina's house, for the yearly gorge-myself-into-coma event we "mericans" call Thanksgiving! And, right after the foodfest, I will head into work...because mental illness pauses for no holiday.

There truly is no meal finer than one someone ELSE makes...LOL Happy T-Day, my fellow "mericans". And remember: If you are going to drink and drive, make sure you have a car. (I have no idea what that means!)

Tuesday, November 25, 2008

Another Seat Filled On The Bus...

Tis the season...for adding MS Bloggers to the "list". Sure hope there's a MS Santa to bring us something nice for Christmas this year! Check out Cathy, over at Navigating The Journey Of MS for some MS holiday cheer.

Sunday, November 23, 2008

Saturday, November 22, 2008

A Lighter Shade Of Pale...

I had my neuro appointment on Thursday as well as an MRI (no, that picture is NOT of my brain/optic nerves). I was told my optic nerves are "paling", and not in a Sarah-from-Alaska sort of way. There were questions about my vision and whether or not I've ever had optic neuritis (O.N.)...unless I can count this episode early last year when I was mysteriously diagnosed with "migraines"...which I've never experienced again...I don't *think* I've ever had O.N. My vision HAS changed over the past year, leaving colors somewhat muted and gray-ish. And, of course as is typical for most MSer's, whenever I get overheated, my vision blurs significantly...returning to baseline vision once I cool down. Insignificant in the big picture in my opinion.

For two days now, I've had that song, "A Lighter Shade Of Pale", earworming around in my head as sung by Annie Lennox. My brain has a funny way of managing the idea of potential blindness...thank goodness my sense of humor has not *paled*...

Thursday, November 20, 2008

Lost And Unfound...

If anyone finds a diamond earring laying around, it's mine. Yep...as is par for my course, somehow today of all days, one of my diamond earrings leaped from my earlobe and mysteriously disappeared without leaving a forwarding address. It's quite odd, too. Because just this weekend, I was looking in my medicine cabinet (where I keep all my "single" earring collections I have created over the past 5 years) and thinking to myself, "it may be time to go buy myself a pair of nice earring posts". Little did I know this was a PREMONITION!

It's not that the earring was THAT expensive...well, actually I don't know the cost because they were a gift from a former life. But the earrings were the last tangible items that remained from my former life, having had ALL of my jewelry stolen in a home invasion in 2003. I decided after that robbery (which left me with only the jewelry I had on at the time of the burglary) that it was silly to keep any emotional attachment to things (my mother and grandmother's wedding rings, etc., were stolen as well as jewelry of my deceased sister). Somehow, however, I had managed to keep THIS set of earrings intact and one of the few sets of earrings I have worn for 5 years.

Letting go of relationships is never easy...and letting go of the THINGS that remind us of better times in those relationships is even harder. I imagine on some level, I have worn these earrings as a final thread of attachment to the memory of those relationship times. I know this, because somehow my heart "hurts" with the acceptance I'm not going to find the mate earring...it is gone. And it is time to let it go.

Perhaps I will find the courage this holiday season to buy MYSELF a nice pair of earrings...from me to me. As a sign and symbol of the relationship I have been forming with myself over the past 4 years. I think THIS pair will come with those "screw back" posts or something I can simply STAPLE to my earlobe without worry of loss again! Sounds kind of painful and bloody, but it may well be worth the physical discomfort to keep myself out of the emotional discomfort and loss I am feeling now...

Monday, November 17, 2008

In The Hours I Should Be Sleeping...

Tossing. Turning. Sleep has left me standing at the altar and looking over my shoulder, wondering if it might burst through the door in that final minute. Right before the daylight apologizes in its saintly, condescending tone, and dismisses everyone from their pew. I would be relieved, certainly. But still angry it left me standing in wait in this stupid dress and heels. This is no way to begin a lifetime commitment.

My bed becomes uncomfortable. Like the fingers of small children are poking up through the mattress, taunting me to rise up and play. Nothing feels familiar in my private sanctuary of slumber. The walls move in and out with the rhythm of my rising and falling chest, squeezing me, and bringing my thoughts in too close.

Eventually and begrudgingly I stand. Fumbling in the darkness for any landmark of certainty to steady my gait, I drag my bones filled with lead to the stairs. First my left foot, weighing heavy like an anchor, then my right. Climbing what must be Jacob's ladder, I drag myself to the final step, unlock the bolts that separate me from reality, and throw open the door.

The night air is heavy laden with the Moon's perspiration and chilled, as if Death has waved His hand in a curse. The street light bounces its rays to and fro in the mist, faintly calling out, "I'm here. Come look for me." I stare upward into the sky, past the haze of artificial light, focusing like a lost sailor in search of land. I am a castaway in the night, searching for a flicker of hope. Searching for a flicker of "home".

In the far off distance, I hear the train shouting her warning to anyone who dares to stand on her tracks in the darkness. But my eyes command my brain to disregard my other senses, shut down my ears, and search. Casting my vision into the blackness, I feel the tug of muscles widening my pupils, as if pulling cords through rusted wheels to draw back heavy drapery.

The black curtains are finally drawn and She presents Herself. Timid at first, then boldly, the Moon shines upon the solar stage in all Her glory. It is Her time to tell Her story, to act out all the parts in the scene. So few purchase a ticket to this performance, and most that have, never returned from intermission or have vacated their seats early and left the theater.

But in the hours I should be sleeping, I am mesmerized by the Moon's performance. She is brilliant and shining brighter than any star. I applaud Her in the silence of my mind. "Bravo", I say to no one who can hear me. "Bravo".

In this moment, I am glad to have been jilted at the altar by sleep. When daylight arrives, I will deal with its incessant, friendly chatter. But for now, I am comforted with peaceful exhaustion. I have been witness to the performance of a lifetime, which few dare to pay the price of admission.

Saturday, November 15, 2008

Why, Why, WHY??...

Sorry, just had to throw that "psi" joke in the picture, which really has nothing to do with this post! Well, maybe a little...but I'll explain, loosely as always. (**And for those of you not in the know, the Greek symbol for "Psi", pronounced, *sigh*, was adopted by the psychiatric world a number of years ago to represent/abbreviate the word "psych"...WE just jokingly refer to it as "the blue pitchfork"**)

So, Tracy and Webster both left inquiries in the comment section of the previous post, basically asking me, "WHY"? WHY do I participate in a yearly fasting ritual/cleansing and HOW/WHY do I stay warm etc. Both were such wonderful questions that I decided to try to provide some answers here.

Most of you (if you've been paying attention, that is) already have discovered I am "polyreligious" (not to be confused with polyamorous by any means!)...I have dabbled in or even practiced for periods of time MANY of the traditions and customs across the religious spectrum. From Jewish Shabbat to Catholic Mass and other crossroads in between. Religion and the occult has always fascinated me on a deep level (which, BTW, ALL religions began as "cults") and I admire the many customs each religion brings to its followers.

But contrary to general principle, I am NOT a religious person. I have a very spiritually based belief system that incorporates the teachings of many of the great prophets: from Jesus to Buddha to Moses, all rolled into a personal spiritual philosophy that works for me. I judge no one by their religious beliefs, only their actions in the world...which is all I can EVER hope another judges me upon.

Some might even go so far as to call me "pagan" because I traditionally honor the Earth religion holidays more so than typical Christian/Jewish/Buddhist/Shinto/Muslim/Hindu observances. And when I refer to "earth religions", I am talking about those practices that follow the seasonal changes and pay reverence to this planet we walk on.

My yearly fast falls on what pagan tradition refers to as *Hallows* or *Samhain* (pronounced "sow in"). You can Google those words to find out more about this reference (And here's a past post from the ol' AOL blog brought over to Blogger recently referencing this observance ). Last year, due to a shingles outbreak and relapse, I had to postpone my tradition until the common New year, January 1st. I'm also a big believer in the notion it really doesn't matter what TIME one chooses to honor their beliefs/values...only that they DO so.

So, my personal tradition of fasting on Hallows began nearly 16-17 years ago when I was a participant in a Women's Spirituality study group out of Madison, WI. I was a practicing massage therapist/body worker at the time and read many of the teachings of Gandhi (who used fasting as a form of prayer) and other teachers. The idea of fasting became a challenge for me because I have always had "food issues", aka, over-eating since I graduated from nursing school. I have also been keenly aware of a fear of darkness that I developed as a child due to family of origin *issues*. And the seasonal change of fall to winter (which used to be designated on Samhain as the Feast of the Harvest...or the coming of the New Year) felt like a perfect time to utilize deprivation of my comforts (food/harvest) to get in touch with my darkness (unconscious mind/winter). Are you still following me here?!? LOL

When I prepare for my yearly fast, it is a spiritual preparation I must attend to. I find a time (as close to Hallows as possible) where I can set aside a minimum of a 24 hour period to pay mindful focus on my thoughts and my body. I deprive my body of the comfort of food so that I can listen more closely to the possible discomfort in my mind. I practice meditation/prayer. I sometimes utilize distraction. I breathe. I become aware of those things in my mind which cannot surface readily when I am in otherwise constant comfort. I cry. I sing. And I begin to visualize exactly what I would like to see in my life and in myself in the coming year. THIS is why I fast. And THIS is why I attempt to cleanse my body following my fast with a strange vegetable diet. It is not because I have MS. It is because I believe the ritual is a perfect method for ME (you, I don't know about) to recenter and focus mind/body/spirit.

That hopefully answers the "why" question of my fasting motive. Now, onward to the electricity question! LOL

In answer to Webster's Q about using heat during this period of time, I can only say this is the FIRST year I have ever added on the electrical black out along with the fast. And I decided to add this into the mix because I have become aware of how reliant and even dependent I am on the Internet/TV/etc., to entertain and distract me. I simply wanted to see what I might be like if I didn't have these things as a crutch.

Temps here in Seattle don't fall much below 40ish this time of year and I warmed my hut up to a toasty 72 degrees before I shut everything down. So, no...I did NOT utilize my electric heat for comfort during my fasting period, but my hut also did NOT fall below 52 degrees in doors either. I wore fleece and used quilts to stay warm as well as pacing exercise! Frankly, it concerned me more to not have lighting than it did heat. I tend to be pretty warm-blooded in the first place, so a bit of chill in the air isn't necessarily a "bad" thing!

And finally, the "Psi" portion of this post comes from my belief that the mind/body/spirit are all interconnected and, when one aspect is out of balance, I tend to *lean* more heavily to the other two. More recently, my body has felt completely off kilter with my MS, which has placed considerable stress on my mind and spirit. I believe when I can switch focus/pay more attention to the other two aspects of my being, my physical being can regain its needed balance. That's not to say I believe fasting or any other spiritual practice will HEAL my MS or CURE me of it...it simply means I will strengthen my body "if" I can strengthen my mind and spirit.

Was this too much information in response to simple questions?!? ....

Thursday, November 13, 2008

Odds And Ends...

Yes, today my precious-es is going to be like peering down into the junk draw of the CHEESE brain...an assortment of disjointed and completely unrelated pieces of *stuff* that I have been meaning to address, but keep forgetting! I blame this on my recent fast (see previous post called "Time Out") as reason I can't string three words coherently in a sentence right now! Seriously...how DOES one survive without the proper nutrients? Which, of course I am referring to caffeine, sugar, meat, lard, bread, and chocolate!!! My 6 food groups...sigh.

So, speaking of my fast...it went well, and my post vegetable detox is going...ah...well, going! I've had NONE of my typical bad habits (yes, that's right...went cold turkey off them all *grumble, grumble*) since Tuesday and, even then, was already trying to cut back/cut out several things to avoid going into complete metabolic SHOCK. Of course I have the usual headache from withdrawal of EVERYTHING and I'm doggoned tired without my caffeine and other stimulants. But otherwise, OK.


I spent the 24 hours from midnight Tuesday to midnight Wednesday without the use of anything electric (Internet withdrawal can KILL you!) and sat in silent darkness, reading only by the light of an oil hurricane lamp. Saint EB had loaned me a book many months ago, which has turned out to be a fabulous read: "Tallgrass". I'm a few, short pages from finish. (One day, I WILL return your book in my *unsaintly* manner, Saint EB.) First time in years I've sat most of a day reading anything besides the Internet! It was relaxing...minus the mental intrusions relating to FOOD and other unwanted but "necessary" thoughts about myself.


Things I learned this fasting/meditation period:


  1. It begins to get dark in Seattle at 4:15PM and is near pitch black by 5:30PM! How have I missed this?!?

  2. There is a plethora of sounds outside in the city when not distracted by electronic equipment...traffic, buses, planes, locomotive whistles, neighbors. I never knew how much sound carries when I am surrounding myself in silence.

  3. My feelings are much more easily "hurt" than what I let on.

  4. In Darwinian Law of *Survival Of The Fittest*, when one is not "fit", they will do anything to "survive".

  5. I do not like to feel vulnerable or afraid or unworthy.

  6. Many of the things I do (bad habits, eating, etc.) I do to avoid boredom OR the anxiety that comes from doing nothing and having to listen to my own thoughts.

  7. There is someone in my life right now who I harbor much animosity toward, which is counterproductive because anger/resentment is EXACTLY what this person strives to create unconsciously. It is called "Borderline Personality"...the *I Hate You, Don't Leave Me* (which is the title of a perfect book to understand BPD) this person operates from, and I am only perpetuating the dysfunction with my reaction.

Those aren't exactly Stephen Covey's, "Seven Habits Of Highly Effective People", but they ARE seven insights learned from deprivation and spiritual focus/meditation! LOL


*About Me*, a fellow MS Blogger over at, Rooms With A View, sent me a comment several days ago asking if it was OK to link CHEESE to her blog. And now, SEVERAL DAYS later, I have finally added her blog to the list of possible drinks over there in the left hand bar! The Short Bus is getting crowded, folks...could we please find a CURE for this dreaded disease called, Multiple Sclerosis?!?!


A Dani Sevilla, from Survivor Corps.org , has frequently (OK, actually twice now) sent me a personal email requesting I write a post about specific topics related to the Survivor Corps mission. I receive personal emails from MANY groups with similar requests and, unless I can somehow RELATE their topic/concern to Multiple Sclerosis, Chronic Disease, Disability, or Mental Health, I don't write about about them or post their links on CHEESE. I often wonder if I am being sent the emails simply because a webcrawler has picked up my email address from my Blogger profile, but the person SENDING the email to me has never read CHEESE. It makes sense this might be the case, given some of the topics I have been asked to write about. And, because the possibility exists I am only being "cut -n- pasted" into a standard form email, I ALSO have a form email response I REPLY to these requests. It basically says, "thanks, sorry about x-y-z and I'm sure it's a worthy cause and/or problem, but I can't relate it to MS"...I'm just *nice* like that. LOL


SOOOO...Dani, if you are reading this actual POST, I apologize for not writing a post about your issue...again. You've asked me to send you an email with a link to my post, but instead I'm POSTING my response to your email here. Nuff said.


A couple of you have commented or sent me a private email asking permission to either copy or link my post called, "The Most Difficult Letter I May Ever Write" , back in October of this year. Of COURSE you can! Especially since it was written for you (and me). I am always flattered (in an "I need attention" sort of way) when ANYONE finds comfort, humor, solace, challenge, etc., in ANYTHING I write. I make no money whatsoever on this blog (but I seem to WASTE a lot on it in the form of TIME!), and I am not so grandiose as to think whatever I write here hasn't already been said by someone else in a different way. It's only plagiarism if you tell people YOU wrote it...and since plagiarism ETHICS only apply to *real* writers or journalists, I think you're pretty safe to copy or cut -n- paste any line o' crap you read here! LOL


Which leads me to a quote from Blindbeard in a recent post she wrote, which I left comment, then she left an "update" apologizing for possibly offending me. Mkay...it takes a GREAT deal to offend me, which I certainly was NOT. The original quote had something to do with me possibly inferring I had hoped my recent bout of MS symptoms was PML versus a relapse, because I would rather die from PML (or something like that? now I'm probably MISQUOTING the quote from Blindbeard!).


Dearest Blindbeard: There is pretty much NOTHING you could say to which I could EVER take serious offense. We Sarcasm Sisters must stick together! And, if what you THOUGHT I meant in something you read here on CHEESE left you thinking that quote, well...then, perhaps you read something between my thin lines of sanity and stability! And I just keep coming back to READ you, don't I?!? (As proof of my loyalty and lack of offend-ed-ness) If I am ever offended by a comment left on CHEESE or a post someone might write on their blog, I simply don't return to read them...it's called like or dislike, resonate or repulse, affection or apathy...and the world/Internet is just too LARGE of a place to squabble over something as insignificant as another person's opinion. Unless, of course, it is MY opinion. Hehe...Carry on, my Satirical Sister!


OK, off to drink some more of my green tea detox and steam a few vegetables...life without Mountain Dew or meat sure seems boring...

Tuesday, November 11, 2008

Time Out...

That's right...I'm going rogue. LOL

Beginning at midnight Tuesday (Pacific Daylight Time), I will start my yearly fast and meditation, but this year I am trying a new "twist". I am adding a full 24 hour (or more...who knows? I may LIKE this!) BLACK OUT period along with my detox/cleanse. Yup...the phone, the computer, the TV, and all things electric will be shut down. So, you may not hear from me/read anything on CHEESE for a few days. But have no fear (or don't get too happy as the case may be)...I will be baaaaccckkk.

For those of you not "in the know", every year for the past *several and many*, I traditionally do a cleansing fast on Halloween (Hallows, for the pagan in you). But THIS year, I was strapped with working a week of day shifts at the beginning of the time I would normally begin my fast AND I had a Tysabri infusion to throw in there as well. I decided the stress on my body from giving up EVERYTHING I enjoy (that being food, caffeine, sugar, meat, etc.) would be too much mixed in with the above. So I decided to simply delay my yearly tradition to a more convenient time...like now. I will be spending my entire day Wednesday in mindful meditation while discovering what it feels like to be hungry again...something few of us rarely experience these days.

My typical fast usually consists of nothing but water intake for a minimum of 24 hours, followed by eating only vegetables for as long as I can tolerate them (anywhere from a day to several days...some years my *tolerance* is less than others!). Then, I add rice, followed by beans, followed by nuts. The purpose of this *event* is to rid myself of toxic build up, become aware of personal emotional/mental issues food suppresses, connect with all that is holy, center my mind, body, and spirit, meditate on what I want to bring into my new year/see happen in my life, and to basically take a time out.

So, I'm calling it with this blog post. TIME OUT...Play nice while I'm gone...

Sunday, November 09, 2008

Another Neuro Short Bus Rider...

I got a message from Tracy over at, Living Life With Sarcasm, Kids, and MS , with a *strange* request to be added to the (now) 131 Links to MS Bloggers over there on the left hand side of the bar (where drinks are served at midnight...hehe). I say *strange* because, I went over to check out her blog. Seriously...I mean, practically ANYONE who can construct complete sentences AND has MS can make that list over there...hence my use of the word *strange* request. No "request" is needed, just a note to say, "Put me on the stinkin' list"...but she was kind about it anyway.

OK, I don't DO blog reviews because I don't want anyone reviewing my garbage HERE...but I have to say, Tracy's blog is Hi Larry Us! And that's ALL I'm saying, so just go check it out yourself. It DOES have the word, "SARCASM", in the title after all (a blogger kin folk!)...

Saturday, November 08, 2008

Be Afraid...Be VERY Afraid...

OK, sure...the title of this post did NOT originate from the now famous line of Wednesday Friday Addams of the TV show, "The Addams Family". I just LIKE the way she SAID it better than it's true originator, the movie, "The Fly". Whatever. The point remains, you SHOULD be afraid!

"Why?", you are obviously asking yourself at this point. "Why would the CHEESE be issuing such a warning on a sleepy and rainy Saturday morn?" "Well, just sit right back and you'll hear a tale...a tale of a faithful trip. That started from this tropic port...aboard this tiny ship."


WAIT!?! I seem to be stuck now in 70's TV shows!!! Back to the point...being afraid. Or, at the very least, CAUTIOUS. On the Internet and with your personal health care information. Now, let me weave my tale of intrigue and espionage. All right. Hopefully INTRIGUE. Because EVERYTHING I'm about to tell you was LEGALLY obtained without any clandestine act. And the manner in which I obtained it lies right beneath your fingertips.


Y'all recall my recent "upset" (hehe...that's putting it mildly!) with Club Med & the Tysabri Issue? Well, I haven't posted much more information about this because I have been allowing Club Med ample time to make necessary "adjustments" I tasked them with in a follow up email letter shortly after my meeting with the *heads of state*...or, enough time to hang themselves with ample rope. Either way, here is an excerpt of my follow up email/letter I sent after the meeting:


**Specific issues raised concerning confidentiality/HIPAA as well as providing direct patient care and accuracy of information to patients will be discussed with departments/employees involved in these concerns.


This was listed in a recap of what we had discussed and what Club Med PROMISED to follow up on. I have not shared THIS part of my Tysabri debacle because it didn't really relate as much to the Tysabri issue itself, but more to the Health Care Delivery System failure that has/is occurring. But, hey...gloves are coming off as I prepare my next and perhaps FINAL letter to Club Med about the Tysabri issue(s)! (So, Club Med...if you are reading this, and YOU know who YOU are!...a follow up letter is a comin' 'round the bend.) Here is the condensed version of just one of MANY issues that happened at Club Med while getting my 7/29/08 infusion:


I was asked to register at the main registration area for my Tysabri infusion. I approached the desk and was greeted by a pleasant enough woman, who asked for my name. Because I already know the Club Med system has more than ONE of me with my exact name (different date of birth, however), I quickly rattled off my date of birth and the last four digits of my social security number...because I KNEW she was going to ask for this anyway. And this is where my interaction got "funky".


The registration lady looks in her computer and asks me, "Are you any relation to HD?" (This person has the same last name as I do in their computer system and is a male)


"Ah, no", I say rather dumbfoundedly, wondering why I am even being asked this question by a total stranger.


"Oh. I thought maybe you were twins with HD because you have the exact same birth date and he is also having a procedure done at Club Med at 1:00PM today", the registration lady says without a care in the world.


One could have heard a pin drop during the deafening silence as I stood perplexed and STARING at this complete imbecile. Did she REALLY say what I just think she said??? Did she REALLY just release this man's private health care information (HIPAA) to me without so much as a THOUGHT that this violates a federal law as well as potentially gets her a$$ fired?!? Yep, she did.


"No", I say with a look of absolute horror and complete awe. "No. We are not twins and I am NOT related to ANYONE in your computer data base."


And thus begins the continued tale of "fear" I am about to tell. I advised the *heads of state* of Club Med of this issue (among others), more to lord it over their heads in hopes the "fear" of serious federal fines might "encourage" them to listen more closely to what I had to say. They assured me of the above red paragraph: "a re-education of employees regarding HIPAA would occur". Somehow, I doubt that. Seeing as how they have YET to send ME the letter they also promised from the Neuro Clinic where I see Dr. SWWNBN...something ELSE they promised:


**"CLUB MED" will be notifying their Tysabri patients in writing with exact costs or clear estimates of what the patient/their insurance agencies can expect to be billed by "CLUB MED" for the delivery of Tysabri medication at the Hospital's ambulatory infusion center. I can also personally expect this information be provided to me as soon as possible so I may have informed consent in my medical treatment choices without further unreasonable delay.


Yeah right...I can see they got "right on that"! LOL


Soooooo...my NEXT and possibly FINAL letter to Club Med (before I take action on contacting all of the regulatory boards, insurance company, my employer, the newspaper, AND the federal agency that regulates HIPAA) that I have been composing will include exactly WHAT can happen when a health care organization releases private HIPAA-protected information on their patients. And, I'm going to demonstrate to YOU, dear CHEESE reader, just how vulnerable YOU can be on the Internet with just your last name and date of birth!


I obviously HAVE the first and last name of "HD", the other Club Med patient, as well as his date of birth. This is WHY I only sign my name as "Linda D." on all correspondence (unless family or someone who already knows me HAS this information) and you only know my birth date falls in July "sometime". This is also why I maintain a Post Office Mail Box address as my primary mailing contact, my phone is unlisted and unpublished, and unless you know me REALLY well, you've never been to my house!


The above paranoia actually comes from being stalked by a former client while leaving Houston and moving to Seattle. At one point, I even had my driver's license address listed as my post office mail box (on the suggestion of a consulting attorney) until the DMV "caught" this and MADE me put my livable address on it! I have had sheriff's deputies try to deliver criminal trial subpoena's to my PMB because they got it off my driver's license...even THEY couldn't find me...this worked. For about three years until I had to renew the license per State protocol.


Anyway, to make a long story LONGER, please take no offense if I NEVER provide you with my last name or date of birth or address...I have reason to potentially DISTRUST YOU!


So, back to the Club Med story. I decided to LEGALLY obtain some information about HD (not to use against HIM) to present to Club Med, just so they could SEE how much information I can get all off the Internet with just this guy's name and date of birth that they without-a-care released to me. **Please let me stress here (because some of you know the work I do lends me access to certain individuals private HIPAA also), everything I obtained about HD was obtained FROM the Internet, and not from any personal files or illegally.** And here's how I did it:


I now know HD's home address, his phone number, the address of the property he sold in 2003, how much his mortgage was, who he sold the property to, that he has not been in the local jail(s) this past year, he has never been sued, his date of marriage, his wife's full name AND her date of birth. **THUD**


How? By using data bases that are available to ANYONE!!! And, if I continued digging (which I am NOT), I'm sure I could find out MUCH, MUCH more about this individual...all legally obtained with just his first and last name and date of birth. BE AFRAID...BE VERY AFRAID.


I'm going to quickly link the data base searches I used on the Internet to find this information. Several are local or regional data bases (but your county or state PROBABLY has these available on the Internet, too).


First, is ZabaSearch.com . You can look up anyone in the United States and, if you know their approximate or actual age, this is helpful, too.


Next is the Sound Politics Washington State Voter Registration. If you are a registered voter in the State of Washington, I'm sorry to tell you that, not only is your current ADDRESS given out here (minus the last digit of the street address, which is listed as "o" or "e" for odd or even number...real tricky...sigh), but also the last time you voted AND your date of birth.


The Washington Courts website as well as my specific County Records website provides marriage records, property transaction records, bankruptcy, lawsuit, and other information...all with just a LAST name and a date of birth.


The King County Jail Inmate Search lets me know if "HD" has been housed in this facility in the past 365 days (or other area local jails).


And, of course, there is always the infamous Reverse Directory that allows one to get the phone number of a specific address without knowing the name of the resident.


And...sigh...there are MANY MORE PUBLIC DATA BASES out there to find you in, ALL WITH LEGALLY OBTAINABLE INFORMATION. I stopped here because I only needed enough information about "HD" to prove my point to Club Med. AND, I have no criminal intent to USE this information, except to "encourage" Club Med to follow through on what they have already PROMISED to do.


But YOU, my friend, should be afraid...BE VERY AFRAID! Because, if someone as knuckle-headed computer illiterate as myself can find this information online, ANYONE can. And just because a website or Blogger or anyone else asks you for your date of birth to "proceed" through an online registration or forms process on line, it does NOT mean you must provide your ACTUAL DOB...make something up...make up a last name...just don't put this information out there for 6 BILLION people to access (in your profile on Blogger/Facebook/AOL/Yahoo, etc! Because chances are, there is at least ONE criminal lying in wait among that 6 Billion population ready to use your personal information.


I'm just sayin'...(reviving my old, infamous, signature line)...

Thursday, November 06, 2008

Where Did My Day Go?...

My last day off before I begin a 5 day stretch of evening shifts (about 50 hours total), and I seem to have frittered it away like a kid with pennies in a candy store. HoHum...I can account for some of it, but not all. I know what I DIDN'T get done today, but I'm not all that sure what I DID accomplish.

I have finally discovered what has been waking me up at exactly 7:25AM each morning, rain, shine, or if I've only had a few hours of sleep. It happened AGAIN this morning, which set the tone for a very "cwabby" CHEESE head! It is my neighbor's gate...or better put, my neighbor's ANNOYING driveway fence that he opens and closes EVERY morning at 7:25AM on his way to work. The sound is louder than fingernails on a chalkboard, but just as blood-curdling disturbing in content!! I found myself up and out of bed with a spray can of WD40 in my precious mitts, dressed only in my pajamas and slippers, waltzing (OK, more like stumbling, but who SAW me anyway?!?) up the driveway incline in pouring rain, to SPRAY THE HECK OUT OF THOSE DARNED FENCE ROLLERS. I did feel some minor sense of vindication, but not so much...I realized spraying WD40 on metal that is already dripping wet from monsoon seasonal rains *probably* did nothing to resolve the real problem as it will most likely just wash off. But at least I DID something...


And that seems to be about ALL I did accomplish today. Oh, I took a shower...that should make the CNN headline news. LOL There is still a mountain of laundry attempting to engulf my feet, dishes piled high from a wonderful "picnic" lunch that was brought to me on Tuesday by a former colleague (it's only been TWO days ago...should I REALLY be concerned?!?), and a host of other chores on that good, old *To Do* list, which is actually collecting DUST itself at this point. **Heavy sigh** I'm going to have to write a note to myself to dust my To Do list.


With all due respect to this MS body (which I rarely pay), I AM having my post Tysabri infusion *experience*. I say *experience* because I've only read one other blogger who TALKS about post infusion side effects, and that is Kim over at Sunshine & Moonlight. It's as if saying, "I'm having post infusion side effects" is a provocative statement! Or maybe we are the only TWO people out of some 30,000 Tysabri users who HAVE this *experience*...whatever.


My post Tysabri infusion *experience* includes fairly moderate to severe joint pain...as if someone drilled holes in my joints and poured cement in. They ache. My knees and hips don't work right. It HURTS to lie in bed or lie down too long. My neck feels like my head has taken on 10 pounds of extra weight. I feel an increase in fatigue (if that is even possible at this point?!?). My stomach feels "yucky"...not nauseated per se...just "yucky". Like I've taken on too much of some kind of caustic food or spice. I have a mild to moderate headache. And just to add some extra spice to my *experience*, today I have a sore throat and my teeth hurt on one side of my mouth! I've been secretly holding meetings between my rational and irrational mind, wondering if this drug is really WORTH it for me? Since I DID just have a relapse while ON it...hmmm.


I finally consented to another MRI that Dr. SWWNBN has been nagging me about (because I think she gets an insurance cut!), which has to be done at a place within Club Med that I...how do I say? DESPISE! Why? (Not "why do I despise them", but "why do I have to go THERE?") Because this particular place has some kind of new-fangled 3T machine (whatever THAT means) that provides clearer pictures. WHATEVER. They also can't get me in until the 20th in the afternoon, which is AFTER my Tysabri follow up appointment. I argued this *might* be a waste of time to do AFTER I see Neuro & Company, and X, Y, and Z place could probably get me in quicker so Neuro & Company would have a recent MRI BEFORE seeing me. Obviously I lost this battle. I didn't try that hard. :-) I'm hoping this scan will GIVE me some reason to believe the Tysabri IS working (aka, no new or old enhancing lesions)...just crossing my fingers at this point.


Well, it's completely dark outside now at all-of-6:30PM...gotta love fall/winter. Nothing like these two Seasons to say, "Simmer down now and go to bed earlier!" And, since my DW40 trick may have left the joke smeared all over ME, I can plan on my outside alarm clock going off at all-of-7:25AM tomorrow! Maybe this rain and darkness really IS trying to tell me something? Too bad I can't hear the message over the screams that are emitting from my laundry pile, demanding I DO something about this problem, too...

Wednesday, November 05, 2008

I'm Putting On My Nurse's Cap...

Yes, in the picture, that IS dear Florence Nightingale or Sister Flo...patron saint to all nurses. And no, I am NOT Florence Nightingale by ANY stretch of the imagination. Heck, in some medical circles, I'm not even considered a "real" nurse because I work in psychiatry!

But I thought I'd share with all y'all some *tips of the trade* in regard to IV Solumedrol/steroids and oral Prednisone. Since my personal financial DEBACLE while on IV Soly, I'm probably the LAST person who should even be talking about this subject. LOL And then again, this may actually qualify me as an *expert* on the topic...who knows.


Of course, any time I address ANY medical issues here on CHEESE, I feel compelled to add a very serious disclaimer...the disclaimer being, "I AM NOT A MEDICAL DOCTOR". Any concerns you have about your own condition or medications should be discussed with your physician. I only PLAY a doctor on CHEESE/the Internet at times...much like Marcus Welby, M.D. did in the late 60's and early 70's. And THAT show only ran for about seven years, so... :-)


So, back to the topic at hand: IV Solumedrol/IV steroids and the use of oral steroid agents to treat Multiple Sclerosis relapse.


Anyone who has been mindlessly following the *story* line here on CHEESE of my MS saga and treatments knows I have had several series of IV Solumedrol pumped into my system over the past 5 years since diagnosis (as well as most of the disease-modifying medications, but that's a different story). Some of you have been bold enough to ask "why?", while others either thought this treatment was basically fine or simply didn't question. Either way, I'll respond here to explain.


When I first began seeking treatment for my personal brand of MS, I advised my physician(s) I wanted to do whatever was possible to keep me working the longest without impending disability or loss of my job. For a physician dealing with all the uncertainties of Multiple Sclerosis, that's a tall order to ask. And for a patient with MS, that's a thin line of rope to balance upon (especially WITH balance issues!). When in a relapse, I am constantly (as is Dr. SWWNBN) weighing out how LONG to allow my body to simply REST and how SOON it would be appropriate to TREAT the relapse with steroids.


Because I cannot afford to be out ill from my job for extended periods of time (or risk LOSING my job and thus having no INSURANCE!), and because of the type of occupation I have which requires all of my faculties working, I cannot go to work *half baked* or partially functioning. I do not have a desk job and must be capable of rapid, physical response if needed for my own safety and the safety of my coworkers and clients. In other words, it's ALL OR NOTHING at my job...I'm not at liberty to experience extended periods of vertigo, numbness, incoordination, cognitive changes, etc. So, I choose to TREAT most relapses fairly quickly with what has PROVEN to be effective for my own brand of MS...STEROIDS. This is a prearranged agreement I have with my physician(s)...and we can discuss WHY I don't find a different job that is more accommodating to my physical needs at a DIFFERENT time, but not now. :-)


Most of the time, Dr. SWWNBN will order a flat series of IV Solumedrol for either 3 or 5 doses...that's one IV a day, 3 or 5 times. The usual dose of cocktail for ME is 1,000mg...for some, it's 1500mg. And for other MSers, it may even be LESS than 1,000mg. I have a hard time tolerating anything in a higher dose than the even number of ONE THOUSAND, so that's what gets popped into my veins.


I head up to Club Med and have an indwelling catheter (IV or Heparin lock) placed (usually in my hand now, because my veins in my arms were blown from IV Phenergan while hospitalized a couple of years ago...sigh), which stays in my hand for as long as it will remain patent (usable)...sometimes the entire 3 days, sometimes not. I'm just fickle that way. I bring home latex gloves and tape that I can use to cover my hand (taping up the arm opening while on my hand to make a water-proof seal for showering) whenever needed for basic hygiene or dish washing purposes. I prefer to only be stuck ONCE if I can get away with it...because finding a second site for an IV start can get tricky on me.


Steroids are powerful drugs. IV steroids are even more powerful than oral. Interestingly enough, I oddly TOLERATE IV steroids much better than oral Prednisone, as the Pred. tends to make me battier than a bell ringer (but we'll get to THAT issue a bit later)!


Methylprednisolone, or as we know it to be called Solu-Medrol here in the States, is a powerful synthetic glucocorticoid steroid. It is primarily used as an anti-inflammatory which, in theory (please don't make me explain the theory of MS lesions here?!?), lessens the inflammation in the brain of an MSer, thus relieving symptoms CAUSED by that inflammatory response (relapse). But, like ANY drug that has a benefit, THIS particular drug comes with a rap sheet of potential problems (side effects), too.


For instance (and this is just for starters), Solumedrol can have an immediate affect on a MSer's metabolism and their immune system. In layman's terms, it can make one EAT LIKE A HORSE and not even KNOW THEY ARE ILL if they come down with SOMETHING LIKE AN INFECTION. It is not known WHY IV Soly (or steroids in general) cause such weight gain/stimulate the appetite (again, consult your OWN physician here, because sometimes people report LACK of appetite with this drug!), but it is a serious side effect that can occur. I will typically gain anywhere from 5-15 pounds when on steroids, depending on how long the course of treatment is...and I REALLY can't afford to pack on the pounds here...seriously!


It is always important for me to be aware of signs/symptoms of *other* opportunistic infections popping up whenever I am on steroids because the drug "masks" these symptoms. MSers typically report an increased occurrence of bladder/kidney infections, or respiratory infections, and/or poor wound healing. Of note, steroids ALSO can increase a person's WBC (white blood count...the cells responsible for fighting infections) well above *normal* range, which certainly doesn't make sense at all if steroids ALSO can increase one's risk for DEVELOPING an infection, now does it?!? I had to argue with a doctor once in an ER (got sick with an Adenovirus right after IV Soly treatment) that my elevated White Count was NOT due to infection, but most likely due to Soly treatment...he STILL insisted on other tests (like chest X-ray, Urinalysis, etc.) to *rule out* an infection, only to discover I was dehydrated, had a low potassium level, and had a VIRUS instead...whatever. I'm no doctor, am I?!?


IV Solumedrol can also mess with a person's blood glucose levels...messing with equals ELEVATING the level. Yes, that's right. You can ALSO develop drug-induced hyperglycemia (just like me)! I'm not a diabetic, even though I'm probably on my way to developing adult onset diabetes mellitus because I'm too frickin' fat. I typically run a blood sugar (glucose level) of around 80 (*normal*, depending on what lab you believe, is somewhere between 60 - 90 or 70 - 100). But when on IV Soly, my BS (blood sugar, silly!) can creep its way up into the 300's...and THAT'S way too high on any skinny OR fat person's scale.


If I know I'm going to be getting IV Soly, I try to rid my hut of unnecessary sugars and stock my shelves with fresh vegetables, fruits, and lots of protein items (or I have a kind friend make a store run for me). Protein DOES help to combat the rapid conversion carbohydrates will cause when on Soly because it takes the body more effort to convert protein than carbs...it's simple KREBS CYCLE info here, for that scientific mind I know everyone who reads CHEESE has...(truly LOL here AND rolling on the floor laughing). I also have my own glucometer (blood sugar checker thingy) to monitor my BS (if I only had a *real* BS monitor to gauge the B@!! S#!+ that I spew here...now THERE'S an invention!) and keep watchful eye on the increase. Because it always DOES increase...like clockwork. But this CAN be controlled with careful dietary restrictions...which is very hard to do when I am considering eating my cat's food out of binging desperation when ON IV Soly!


I take a *water pill* (diuretic) daily...I was prescribed Dyazide a few years ago (after my Rituxan Study when I developed severe hypertension) and, although my blood pressure has returned to normal for the past 6 months to a year, I just haven't seen my ARNP to discuss stopping the medication (because I'm non-compliant like that). I rather LIKE having a pill that taps off excess fluid every day...it's a *fat thing*...Hehe.


But Dyazide (and MOST diuretics) has its own side effect of not only running the extra water out of my system, but also taking my blood potassium with it through my kidneys and causing me to pee (urinate...ehem) it out (what's called *non-potassium sparing*). Because of this, I typically run a lower or below normal range potassium level (K+ on your lab reports, which usually is found to be *normal* between 3.5 and 5.0). Unfortunately, IV Solumedrol (and MOST steroids) are also potassium depleting...I have had instances when on IV Soly that my K+ level has dropped to a dangerously low 2.8 (people tend to experience cardiac symptoms around 2.5!). So, rather than ALSO having a heart attack while on Soly, I take a prescription potassium supplement whenever I'm on steroid treatments. This ensures my K+ level will hang on to a normal range and I won't be seeing a cardiologist AND a neurologist any time soon. And, symptoms of hypokalemia (low potassium levels) can mimic MS neurological symptoms...because potassium affects how well our muscles work. Too low a level can cause cramping in the extremities and a whole HOST of other symptoms.


Other sometimes annoying/sometimes relieving side effects of IV Soly for me are, a noticeable decrease in my typical irritable bowel syndrome/diarrhea, flushing (or redness) of my face, increased acne, abdominal bloating, hand tremors, increased body temperature, and photosensitivity (lights bothering my eyes).


Now...FINALLY I swing into an area of steroid side effects I know something about. Mental changes.


Most any MSer can describe to you what it "feels" like to be on IV Solumedrol...because the mental changes the drug can cause are what we tend to notice FIRST. Steroids not only work as an anti-inflammatory on the brain, they also MESS with the FUNCTIONING of the brain. I have both observed and experienced what can only be labeled as *drug-induced psychosis* with IV Solumedrol. That's right...the mental health expert is drawing upon personal experience to provide you with this information!


It is not known WHY steroids affect the emotional/mental functioning of the brain. Some theorize it may be due to the restlessness and insomnia the drug(s) can produce, while still others believe the drug(s) actually alter the brain functioning itself, causing an interruption in perception within the brain. Personally, I think it's probably a combination of BOTH.


One of the many benefits of IV Soly I get is a decrease in my incessant fatigue level. That's because steroids cause me to have an increase in energy well above what has become *normal* for me. Steroids also cause my to experience *jitters*, irritability, and restlessness as well as an inability to sleep (insomnia). I once had an episode (early in my experience of MS) where I remained awake for over 56 hours due to steroid-induced insomnia. Needless to say, I began seeing "shadows" and movement that wasn't occurring as well as developing my own crazy brand of paranoia (well...I "thought" people who were trying to help me were actually trying to kill me and the medications they were giving me were actually poison...and THAT, my friends, is called *psychosis*). Once I was finally KNOCKED OUT by my psychiatrist and the psychiatric symptoms were treated, I returned to my BASELINE level of regular paranoia!


What I do now (knowing I am susceptible to this type of episode) is to always contact my shrinky dink and therapist (Hey! I work in the *field* and one can NEVER have too many people to talk to!) so they are on board with my treatment plan. They both step up their monitoring. Which means I can expect phone calls from either or both of them, just "checking". I also begin a low dose regimen of Klonopin at the start of my treatment just to get some benzodiazapines (anti-anxiety medication) under my belt...just in case. I have a PRN (as needed) prescription for Zyprexa, which IS an anti-psychotic medication (used to treat a host of disorders, but also psychosis), which I will generally take if I have experienced insomnia for one or more nights. I don't *like* to take the Zyprexa because it is highly sedating and also has a side effect of weight gain...but it sure beats hole-ing up and hiding behind locked doors because I *think* someone is trying to kill me! Sigh...


Steroids can also trigger serious depressive episodes (Jen, over at MSStrength, has written a wonderful and heartfelt post about this very experience) and anxiety attacks that a person might not *normally* experience. For some, suicidal thinking (or suicidal ideation) raises its ugly head while on steroids. And because the brain is already whizzing around and firing weird signals (most likely from the frontal lobe, but again, nobody knows for sure), a MSer on steroids BELIEVES or can easily buy into this thinking...because the mind has a way of convincing itself it has ALWAYS felt this way and will NEVER feel better. That's not to say the depressive/anxiety symptoms and feelings are not REAL, they are just drug-induced and not necessarily coming from the *normal* brain...or at least the part of the brain that uses reason and logic to resolve this type of experience on its own. IT IS CHEMICALLY-INDUCED.


MSers are already at a very high increased risk for suicide (I've read various studies on this phenomenon, and NONE of which, are recent studies)...anywhere from 3 to 5 times at a higher risk. Again, *speculators* (what I like to call researchers and psychiatrists!) have various theories about why this is true, ranging from depressive symptoms due to physical disability/changes and depressive symptoms due to altered brain chemistry. That's WITHOUT steroids on board. "We" may already have a propensity toward negative psychiatric symptoms just by HAVING MS...it makes sense if "we" pump a highly toxic chemical like Solumedrol (or ANY steroid) into our system, "we" might set off a dangerous chain reaction.


A few other things I do (just to be certain I keep my sanity) while on IV Soly, is to print out a list of my emergency phone numbers and keep this list by my phone and/or on my kitchen counter top. This is because I can become so cognitively impaired (DUMB, for a lack of a better word), I might not be able to LOCATE these numbers if I needed them. I usually make sure a friend or two knows I am doing IV Soly treatments "just in case"...so I'm not found dead 3 weeks later because my cat and I tangled while I was in a steroid-induced fit, and the CAT won! I leave this list out in plain sight because I live alone, and if a friend needed to know who to call, they could easily find my doctor's numbers on this list.


I also try never to engage in any mental activities that require concentration...which leads me all the way back to the origins of this post and my checkbook debacle! Boy, did I slap myself to remember THIS one the hard way...due to paying my bills while on steroids, I have managed to rack up ONLY $75.00 in overdraft fees with my bank...something I have never done in my LIFE! So, if you need proof of this last suggestion, well...I'm the scientific experiment. DON'T TRY TO DO ANYTHING THAT REQUIRES A HIGH LEVEL OF CONCENTRATION WHILE TAKING STEROIDS!!


And yes, that last line WAS a **note to self**...

Tuesday, November 04, 2008

Party In The Hood...

If I didn't know better, I'd swear I was living in a war zone...but it's just a party in da hood, celebrating the announcement of Obama as our 44th President of the United States!!!!

Gonna go get me some of that "Bush Be Gone" spray...

09 America The Bea...