Friday, May 30, 2008

Almost Human Again...Almost...

Maybe it's the wonderful, cool weather we have been having lately...or perhaps it's a "clear" conscience (doubtful!)...quite possibly it is the Baclofen/Advil regimen I have been taking at bedtime. Whatever the cause, I have been sleeping like a baby (whale) these past several nights and I have to say, "IT FEELS DAYUMED GOOD!" I am slowly returning to feeling almost fit for human consumption again...almost.

It is truly amazing how a little sleep can clear my thinking, my emotional body, and give some relief to my physical body as has been a Godsend. The downside (I always find SOMETHING to complain about) is I have very little free "awake" time when I am sleeping a full, eight hours...because I work almost 10 hour days, most of my awake time is now spent either getting READY to go to work or AT my work. This is leaving me little time to surf the net, catch up on my blog reading, or do much of anything that would be my *normal* I-only-sleep-five-to-six-hours routine. And, usually when I am able to sleep this much, it is because I am coming down with something like a cold/, I'm always cautious to toot my sleep horn when this happens!

But, whatever...I'm just happy to be finding some rest within the Baclofen/Advil waves. My joints still ache pretty much constantly and the pain in my neck/shoulders remains, but it is MUCH easier to tolerate when I feel more rested. Who knows? I may even take a turn for the "pleasant" if this keeps up! That oughta scare the bejesus out of those that know my general cranky temperament...LOL

I'm off to bed again...wish me luck. And I hope I didn't just jinx myself...

Thursday, May 29, 2008

Tiny, Little Tremors...

But not MS-related. Anybody else concerned about the recent increase in the number of earthquakes we are having around the world lately? We had two just today in the Seattle/Carnation area, which (I swear by all that is holy) my cat "registered" as she was acting quite strangely just before the first one around noon...barely enough to make the needle jump, but SHE did. Just wondering...

Tuesday, May 27, 2008

Not Enough Hours In The Day...

Or at least in MY day anyway...where DOES my time go? This seems to be a question I ask myself more and more lately.

Some people have blogged about the Spoon Theory in relation to Multiple Sclerosis...the wise notion that we only have so many "spoons" to use in a day and then we run out. I suppose this applies to me as well. I am constantly considering just staying in an eastward course to try to outrun the sun dipping over the western horizon.

Today was one of those such days...not enough HOURS or energy in the day to complete everything I had good intentions to get done. I DID go to an appointment this morning followed by having all five of the hairs left standing on my head whacked back (aka, haircut). Today was one of my few days off from work, so I wanted to take full advantage of the hours and get some things crossed off my list. I have SOOO many tasks to complete before my sister arrives for her visit the first week of July...I'm starting to get a little panicked!

I came home from my haircut feeling "lighter" (my hair has gotten out of seems without Novantrone influencing the mop, it is growing wildly from all directions) and with full intention of getting out the paint brushes and continuing my maddening journey of painting my kitchen...with only 4 fingers among two hands that can even FEEL a brush, this is no easy matter! And, as I stepped out of my car on a rather not-so-typical sunny day in Seattle, I heard the faint cries of the lawn screaming at me. We've had some nice spring showers the past few weeks and my lawn has taken full advantage of the moisture...growing like a jungle. The forecast for the rest of the week "may" include more rain, so I sighed a heavy sigh and decided I would HAVE to address the crop of tall weeds (I said lawn, didn't I?...I meant WEED PATCH).

I changed my clothes and got out the super duper yard tools and tackled my upper goat grazing pasture (I left the hillside...not THAT stupid...this time!). I worked for about 2 hours on this, with sweat running so heavily into my eyes, my glasses became bowls of pooled water if I bent my head forward. My back began to ache fiercely and my forearms became numb (to match my hands), so I decided I HAD to stop...still planning to simply rest and then go inside and try to paint.

Resting became another matter...I felt exhausted to tell you the truth. I had spent too much time in the bright sun and my body was yelling at me to become supine...which I did...laying on my couch and staring hatefully into my kitchen that STILL needs to have coats of paint slapped on it!

After some time on the couch, I decided I had to shower off the yard grime (and dried sweat) from my body, so I gimped into my shower. I ran a tub of warm water and promptly fell asleep in my private whirlpool without the "whirl". I was awakened by the Princess O' Darkness pawing at the door and yelling at me it was time for her evening meal. STILL planning to dip a brush in paint, I dried off and went back out to the kitchen to feed the starving beast...but not before I realized I needed to complete a few loads of laundry before returning to work tomorrow! Oh, and there was the matter of feeding myself as well.

I pulled a load of wash out of the machine and tossed it into the dryer, reloading the washer and headed to the kitchen to forage for food. And this is when I noticed the stack of teetering dishes that needed to be washed and put away...hmmm...must feed first, I thought.

After fixing a reasonable evening meal, I then proceeded to wash each of the dishes I had stacked up over the past week (where's the MAID?!?) and continue with the laundry patrol. Now, in bare feet at this moment, I traipsed across my living room rug, only to discover I had tracked in so much dirt from my yard excursion, I would need to was making the bottoms of my feet hurt!

Vacuum out, I chased the cat with the whirring sucking machine. Neither one of us was "thrilled" at this point...myself OR the cat. I happened to glance over at the windows and noticed it was now dark outside. Forgetting it is almost SUMMER in Seattle, I imagined I MUST have a good 3-4 hours left of my day before I would need to hop in bed. My body ached horribly, but I tried to encourage myself to override its signals telling me to STOP. I checked the clock and shook it...battery must be read 9:45PM! Surely it could NOT be that late?!? I checked another clock...those dayumed Energizer batteries NEVER was almost 10:00PM.

Once again, I have managed to thoroughly exhaust myself in routines...something I will surely PAY for tomorrow. But there always IS tomorrow...isn't there???...

Sunday, May 25, 2008

Bends In The River...

Surviving my grave yard shift last night, I return to the semi-conscious world of the living and Memorial Day Weekend. I'm not exactly certain *what* has inspired me to discuss "river bends" today, except that I have taken some time (while awake early this morning) to dust off my memory (a general theme for Memorial Day) and think about some of the people that have gone before me...not only soldiers defending this country, but events with family, friends, and strangers who have crossed my path, sometimes altering my "flow" forever. I had an opportunity to *remember* several life events early this morning, while listening to the birds serenade in the sun...a quiet time just for myself to ponder those "bends" in my own river of life.

I've had the wonderful fortune of traveling down several well-known rivers in the United States. I have watched heavy barges being pushed up and down the Missouri River while the brown swirl of the water threatened to swallow the small boat carrying me. I have floated in nothing but a tube down the grand Guadalupe that cuts through the heart of Texas. I have rafted the entire course of the Colorado River from Lee's Ferry Landing to Lake Meade, sleeping under the stars on the sandy banks while listening to bats swoop precariously close to my face and feeling the heart beat of the indigenous people in the earth. These are just a few of the highlights of rivers in my physical life.

Each river has held its own mystery for me...some, cut through high slabs of granite and rock that has blocked out the sun, while others flowed effortlessly through flat, silt bottom channels. But what has always been the common denominator between ALL the rivers I have been on is this: bends. As a matter of fact, there is no river in the WORLD that has a straight course unless it has been altered by humans. And this is because the river's SOURCE is so powerful it cannot be stopped from meeting ITS destination to other rivers, lakes, or oceans. The river simply learns to "bend" around whatever obstacle it encounters, often changing its course over time...but in the will STILL meet its destination.

Often times, we hear people metaphorically speak of "what lies around the bend", but this post is not about that. This post is about the "bend" itself. The obstacle or situation that has caused the river to curve in its constant flow and drive to become one with its destiny.

River "bends" can be caused by large mountains or something as simple as logs cluttering its channel. Logs tend to be easily "bent" around, while mountains require a river to sometimes leap its banks, ripping away rock and soil, in a ferocious display of determination. Each "bend" and flow has its own unique pattern and beauty...sometimes leaving rapids in the "bend" and sometimes creating deep channels. Occasionally a "bend" may also have an extreme widening of the river with calm and effortless water flowing around the obstacle. The river *learns* to contain itself and its flow, cutting the easiest pathway to its destiny. And, as is with all nature, the river never STOPS greeting obstacles in its course due to circumstances such as wind, rain, volcanoes, etc., that are not of the river's control. It is also important (when studying rivers) to keep in mind, obstacles are neither categorized as "good or bad"...some are quite grand, while others hold treachery and threaten to block the water's flow.

My life's *river* has many bends in it as well. Circumstances not within my control have caused my *river* to flow in a winding course on my way to my final destination. People have influenced many "bends" as have common, everyday occurrences. Here are just a few of the "bends" in my river:

1. Watching my mother stop breathing, then bringing her back to life with CPR...only to hold her hand 3 days later and let her go as the life support machines were shut down.

2. A lover's embrace and the safety and security felt when held in loving arms.

3. Being witness to a sunset on the peak of the Airport Vortex in Sedona, AZ, and finding my way off the mountain in the dark, without a light, map, or trail.

4. Being diagnosed with Multiple Sclerosis.

5. The death of a sibling.

6. Making the final seconds shot in a championship basketball game.

7. Witnessing a stabbing and having the victim die under my bloodied hands.

8. Bearing witness to my first child birth experience in nursing school, cradling "peanut", then placing her in her mother's arms.

9. Surviving a somewhat brutal childhood and the painful process of self-discovery that followed.

10. Saying "good-bye" to someone, because the pain of staying hurt more than the agony of leaving.

And I wouldn't trade in any of the above experiences because they have made me who I am today...shaping my course...establishing my flow.

What makes up the "bends" in YOUR river? It's a great weekend to recall and remember...

Saturday, May 24, 2008

The Pain In My Neck, She Has A Name...

And no, her *name* is NOT Dr. She Who Will Not Be Named! SHE lives closer to the pain in my gluteus maximus, right below my sacrum...

Degenerative Arthritis...another name for Osteoarthritis. The most COMMON type of arthritis in over 100 different *brands* of the joint-inflaming disease we sometimes just call "arthritis". It usually affects many of us as we age and is caused by the inflammation, breakdown, and loss of cartilage in the joints (because, as we age, the composition of the cartilage/fluid content changes and is more susceptible to breakdown). Being over 40, fat, female, having prior injury to a joint, having another inflammatory disorder (such as gout, etc.), and just plain old wear and tear aging are all RISK factors for developing Osteoarthritis. Oh, and there is NO CURE (sound familiar MSers?!?), only palliative treatments. And, although I've heard the *urban myth* (I say with sarcasm, because I've heard this repeatedly from OTHER MSers!) CORTICOSTEROIDS (aka, Prednisone, Solumedrol, etc.) INCREASE the risk of developing Osteoarthritis in the joints, there is little DOCUMENTED information about this...God forbid, the drug companies/Medical Establishment should ADMIT 400,000 MSers might be right and tell us this!

And now, back to I'm CERTAIN your life is revolving around MY world. LOL Let me give you an idea pictorially what is occurring in my cervical spine. This is a picture of a relatively NORMAL MRI of some poor, unsuspecting sucker's neck/spine:
You will note the thin, white lines running vertically along that long canal in the center? Well, that long canal/thick line is the spinal cord, resting comfortably within the spinal canal created by the bones. Those thin, white lines are cerebrospinal fluid (abbreviated as "CSF", for those that want to play along as armchair neurologists, such as myself)...that wonderful and necessary liquid that surrounds the brain and spinal cord and CUSHIONS our delicate neurological systems by providing a nice BATH for our little nerve fibers, tissue, and axoms to float around in. We HAVE to have it...CSF...without it, our brains and spinal cords would die, so believe me when I say it IS important and "should" surround these tissues and FLOW around them.

That Lego-like, chain-linked column running vertically along side the spinal canal to the left of it with the *bandy* looking sections is the actual spinal column or "vertebrae" (again, for that armchair neurologist in you!). Between each section, there is a thin, dark line, and those lines are the vertebral discs (simplified? cartilage)...the cushioning between each of our spinal bones that lets the bones flex, glide, spin, and move. There are 7 bones in our cervical spines and there is "supposed" to also be a natural CURVE in this area of the spine as gives our fat heads something to rest upon and the "curve" (otherwise known as the lordotic curve...hehe...) bends slightly forward. Some attribute the curvature here to represent a "C" shape, and thus believe THIS section of the spine got its name "C-spine"...personally, I think it was probably just a lazy neurologist or radiologist that started this trend, who didn't know if the "C-spine" was spelled CERVICAL or CERVICLE (the latter referring to the CERVIX, or the...ah...cartilage opening of the uterus on the "neck" of the womb. Kind of a big difference in location!!!)...but, I digress as usual.

So, those little, dark bands, called "discs" are *supposed* to sit neatly and comfortably, with an EVEN CIRCUMFERENCE between those 7 cervical (huh, huh...I said *cervical*...humor for MDMHVONPA) bones. And those 7, cervical bones are not *supposed* to touch. Those discs are also not supposed to protrude (or bulge/compress/herniate) into the spinal cord (medial) or outward into the tissues (lateral) of the neck.

Note a few differences? And the cause of the PAIN IN MY NECK as well as the numbness in my lateral hands:
What is ALSO very, very important (at least to ME!) to conclude on my C-spine MRI is this: MY CERVICAL LESION HAS HEALED! Yep, no enhancement, no "shadow" (what would be seen with or without gadolinium...the dye used to show if there are lesion enhancements/active disease/inflammation), and no indication of it's former is NOT causing my current symptomology (although I've been told not to toot my horn too loudly about this just yet, but I say PARTY). So, back to the pain in my arse...I mean neck...I mean, my appointment with Dr. SWWNBN!

Long story drawn out longer with embellishments for effect (LOL, Spaz Attack...just for YOU). I went to see Dr. SWWNBN on Thursday, with the sole purpose of putting my foot down about these MS drugs/treatments and to formulate a cohesive plan between us (because she HATES to be left out of my decisions and wants to believe they come from her) for any ongoing care I may need. I had decided to give TYSABRI one more shot (er...IV) in June and, if my systemic joint pain continued to debilitate me, I was/am stopping the MS disease-modifying therapies. The side effects and outcome ratios are just NOT worth it to me at this point in my life...I am losing too much time at work and QUALITY of life at this juncture to continue to consider the treatment(s) beneficial in the short term (hold your tongue all you CRAB/TYSABRI/NOVANTRONE/IVIg users! It's MY PARTY and I'll cry if I want to...or stop medications, too.). As I explained to Dr. SWWNBN, I am not CLINGING DESPERATELY TO LIFE and seeking LONGEVITY as much as I am the "here and now" moment...and I'm sick of feeling sick in the here and now...from drugs...from treatments. I'm willing to put the bullet in the chamber and spin it...take the gamble...for a few days/weeks/years of normalcy. Until something better comes around or I change my mind again out of FEAR of the unknown...and either could happen at any moment. LOL

With a look of bewilderment (or horror, it was hard to tell), Dr. SWWNBN proceeded to ask me if I was "suicidal"? The look of bewilderment (or horror, it was hard to know) shifted to MY face. "WOOT?!?" I exclaimed rather loudly in disbelief, followed by a resounding, "NO!"

I went on to attempt to explain that, just because I was no longer willing to accept treatment as deemed by the Medical Establishment, did NOT make me suicidal (although I WAS bordering on HOMICIDAL thinking), continuing with the "you're not God" lecture and the "you don't know everything and can't make me do/tell me what to do anything" speech. Yes, I DO banter with my neurologist and I find it most refreshing to have that opportunity to REALLY tell a doctor what I think.

Unfortunately, THIS conversation quickly became shadowed by the conversation (and subsequent "prove it" episode I developed) surrounding my NECK and the symptoms I am currently having NOT due to MS...allegedly. The MRI was quickly flashed across the sky like a Batman signal and the good doctor pointed and remarked and bullied me into submission (she had to find SOME way to shut me up and put me in my place) to listen to her belief (and a radiologist' report) that I have a "bad" case of osteoarthritis in my neck. She also did a thorough neuro evaluation and concluded I am developing much more weakness in my left arm/hand/wrist...AND, if I don't do something about this now, I will lose functioning of my left wing...huh. KABOOM.

She INSISTED I see a neurosurgeon for evaluation...I wore the heels off my shoes digging them into the floor and repeatedly saying "no" and that I "didn't care" (more bewilderment and that "are you suicidal?" look...LOL) as she tried to drag me by the nose to the neurosurgeon trough to feed. I won THIS one. She finally relented and moved on to plan #2: Physical therapy with steroid injections into my neck. My heels became bloodied at this point.

Ah, that would be "NO!" to having someone dig around in my spine (who I don't even know because Dr. SWWNBN would not be doing the injections...has to be done with a type of x-ray called "Flouroscopy") just to shoot steroids into the intervertebral spaces of my spine, which I believe have degenerated BECAUSE OF STEROIDS!!! Yeah, I'm breaking a leg (or my neck?!?) running to catch THAT band wagon to jump upon. No, no, no.

Now, after 3 days post appointment, I have compromised with at least TRYING physical therapy...although I'm not hopeful much will be resolved from this. But, hey? It's free massage, right?!? Although I've had a PT tell me they don't "do" massage much anymore...guess they are above that "touching" thing, like MOST medical practitioners. Whatever...I'll let them string my head and neck up in traction devices and hook up electrodes that shock me and give me the same old exercises to do that I SHOULD be doing anyway. Been there, done that...have had many sessions of PT before...back when ALL of my symptoms were attributed to degenerative disc disease in my neck and MS was not even THOUGHT to exist in my noggin. But I'll go. It's all about compromise. Dr. SWWNBN needs to FEEL like she is doing something proactive to "help"...I'll give her THIS much. And, after I've had some time to digest, research, and consult with a few colleagues, I *might* return to our conversation about injections and surgeons and "WHY YOU'RE (me) SO E-FFING SUBBORN!" And I quote. I am on a beautiful Memorial Day Weekend in Seattle, sitting at a computer desk, craning my neck to type on a keyboard with numb hands, when I should be outside enjoying the *here and now* moment of a gorgeous day...before I have to return to work a grave yard shift tonight...sigh. C'est la vie...or at least MY life anyway...

Friday, May 23, 2008

You're Kidding Me, Right?!?...

Had the "comin' to Jesus" with Dr. She Who Will Not Be Named today...the talk. Made my point(s) about continuing MS treatment...she made hers. I'm still spinning a bit from our meeting. She wants to refer me to a neurosurgeon because of my neck (WOOT?!?) appears my latest diagnosis of degenerative arthritis is causing compression in my spinal cord based on my recent MRI findings...allegedly why I now have numbness in my hands bilaterally and weakness.

Screw the MS...joke's over...this isn't funny anymore...

Wednesday, May 21, 2008

Anybody Find An Eyebrow Laying Around?...

Oh, the horrors! My right eyebrow has finally gone missing...sigh.

Yes, it is REALLY urban myth here. My right eyebrow has finally vanished from my face, with only a few tiny hair follicles still hanging on for dear life. I happened to push my face close enough to a mirror this morning after showering (which I rarely do...gastrointestinal system just can't take the shock) and thought something looked "amiss" eyesight is so bad I cannot SEE my face in my bathroom mirror without my coke bottle glasses on, so it is a rare occasion I would even notice the portion of my Neanderthal head just above my eyes.

It took me a bit of squinting the vision to adjust my right 20/200 eye into focus as I moved my head back and forth inches from the mirror, but there it was...or WASN'T actually...the missing component to my once symmetrical face was my right eyebrow. It had obviously crawled off my face sometime in the past weeks and didn't even leave a forwarding address!

Not to be outdone by anyone else with too many autoimmune disorders, I was diagnosed with alopecia areata before I was ever diagnosed with Multiple Sclerosis. My hair stylist noticed (between a three month period of hair cuts) I had developed a "bald spot" on the right side of my head...because I've always had a fairly thick head of hair (to match my thick skull!), I personally had not noticed the shining, hairless patch of scalp...but when it was pointed out to me, I panicked. After all, even chemo cancer patients don't WANT to be bald!

I immediately made an appointment with my ARNP, thinking I must be lacking some vitamin or electrolyte or had developed a brain tumor. She took one look at my "patch" of bald and announced, "You have alopecia areata. There's not much you can do about it." I panicked further.

I was born into a genetically mutated family of true Neanderthal a matter of fact, a friend of mine jokes that I may have been the first in my family to walk up right (and I've still never forgiven you for that snide KNOW who you are!). We have big heads...not big brains, just big heads. And our skulls are bumpy and somewhat oddly shaped...must be why God gave us thick hair? To cover our ugly noggins.

Anyway, the thought of going bald and having to sport a skull that looks like the topography of Mars was unnerving...I started researching hats. But when I realized most hats look even WORSE perched upon Mt. Skull, I abandoned the approach and just came to terms with my balding head. My hair stylist and I worked out a "new doo", by parting my hair on the left side and doing a pseudo-Donald-Trump-Comb-Over to the right...hiding my brightly shining bald beacon under my coife of new hair arrangement. I soon almost forgot there was a hidden patch of pale skin just beneath the surface of a few suspiciously placed hairs. I moved on...I got over it. LOL

Until I began to notice my bald spot growing, that is. But my "bald" did not simply grow wider or expand it's circumference as one might anticipate...noooo, that would be too simple. MY bald began to expand in a straight line from the "spot" toward the front of my a completely bizarre 1/2 to 1 inch wide part! And it soon jumped from my hairline above my forehead and stretched itself down into my right eyebrow! For several years, I sported only 1/2 an eyebrow over my right eye. And even this, too, I got over (frankly by this time, I had more important things to deal with like MS and a middle-aged gut!).

Today's discovery of the missing eyebrow (not even the half that once was showed any trace of ever living above my eye!) was somewhat alarming...and then, it became funny. I mean, seriously...what ELSE can one do but laugh? There's no treatment and no cure for alopecia areata and for all I know, by the time my 50's role around I COULD be entirely bald...might as well get used to the idea now...and if it DOESN'T come, then won't I feel lucky?!?

In the meantime, I'm going out to see if Lee Press On Nails also makes a Press On Eyebrow...I'd like to find one in a shape that would make my face look like it is in a constant state of "surprise". And of course, there's ALWAYS that complete kit arrangement like in the picture...

Tuesday, May 20, 2008

Is It A Sign?...My "HOPE" Broke...

Right there in the middle of my morning, my HOPE broke. ancient MS Society ORIGINAL wrist band of HOPE snapped and fell like a lead balloon to the floor! I didn't "do" anything to just JUMPED off my wrist in fatal escape. I take it as a *sign*...I think my HOPE just committed suicide...

The "Society" HAS issued a new wrist ORANGE, of course...with "Join The Movement" on it. Sorry, folks. No can do...I just can't sport anything with "JOIN THE MOVEMENT" on it. Makes me think I need to fart or hit the toilet to drop a load...OR...laugh hysterically...

(**pilfering through drawers now for another ANTIQUE wrist band...I'm sure I bought a thousand of these when they first came out...when fear, disguised as HOPE, was swirling around me**)


Sad, but true...there are now 116 MS Blog links over there on the CHEESE side bar. I now know of 116 people diagnosed with Multiple Sclerosis, which sux really, if you think about it!

The latest to be added just today to the ol' "read 'em and weep" (often tears of laughter, I might ol' MSers can be quite humorous in tragic presentations!) is : Run To Live: A "normal" Life With Multiple Sclerosis .

I occasionally take the time out of my busy schedule of navel lint contemplation (aka, total self-absorption) to tell all y'all when I add someone new to the "list"...sometimes I don't. Not because I don't like what I READ when I discover someones MS blog for the first time...but more so because...well...I'm lazy! Yep, my mother was right all those years when I didn't want to do my chores...sigh.

But the blog I'm talking about above caught my eye this morning (from a comment on CHEESE left by the blog author, FRAU1979) is written by a 28 year old who was diagnosed with MS at age 18, while still in High School. I cannot in my wildest dreams IMAGINE what receiving an MS diagnosis must have been like at that age. 10 years post diagnosis (and LIVING with the disease), this young woman writes about truly LIVING with MS...and growing...and becoming.

Check it out if you have time...FRAU1979 is a nice breath of fresh air. At least she/her writing is to THIS aging, degenerative arthritic, MS body...

Monday, May 19, 2008

Going In For The "Talk"...

I made an appointment today and I'm "going in" this week to have THE talk with my neurologist...THE talk where I let her know my thoughts about continuing MS treatment(s) or not. THE talk where we will most likely NOT see eye to eye, but I will take the opportunity to explain my concerns and motives for possibly stopping medications now or in the near future. THE talk where I will hopefully leave the office unscathed and intact after stating my position (most likely against medical advice). THE talk in person versus email communications...novel idea, eh?...

Saturday, May 17, 2008

Time To Consult The All-Knowing Magic 8 Ball...

Finally, I'm back somewhere between the living and the blogging world. I have not had a pleasant week. Which is NOT to say my weeks must all be "pleasant", although I AM wondering if that would not be too much to ask?!?

I don't even know where to begin to tell you about the "events" of this past week in the BrainCheese've already read about the fateful Tuesday of my Tysabri being withheld...only to then RECEIVE it the very next day. And then there is the matter of being TAGGED with yet another disorder...degenerative arthritis...which I am STILL begging to differ about this widely slung label. All water under the expansive bridge, I suppose.

Thursday, I awoke (if I ever really DID sleep?) approximately 4 inches shorter, as my head had retracted into my shoulders like a turtle within a shell...pain swirled about my upper body (of course, NOT in my hands...still can't FEEL those buggars!) as I tried desperately to elongate my neck back to its original length. The joints in my knees and hips ached as well and I recalled having a similar "episode" following my last dose of Tysabri...not to worry...I have narcotics available in my pharmaceutical arsenal. I decided to hit the metaphoric nail on the head abruptly with some Percocet and Advil, in hopes the painful experience would remit quickly. And this, my friends, is where my tale of woes takes a slide down the rabbit hole into Wonderland.

Between Thursday morning post narcotics and Friday evening, my life became a bit of a blur. And, there is only one way to describe the next 36 hours of time in this tale: I LOST MY SH!+. Plain and simple.

I proceeded to CRY the entire day Thursday (no exaggeration...the ENTIRE DAY) with my mind bouncing around like a loose sander on a board. I could not regain my equilibrium, could not "get a grip" (as one might say lovingly to someone in my circumstance LOL), and could not, for the life of me, put into perspective exactly WHAT was happening to me. It was as if someone had replaced my tightly wrapped, anal retentive, calculating mind with the brains of someone circus-freak crazy. I observed myself have a near out of body experience while I tried desperately to keep one foot firmly nailed to the floor. I was in the throws of "having a moment"...

After an urgent call to the only doctor I trust to confide in where matters of the psyche are concerned (aka, my psychiatrist), it was decided the only way out of Wonderland was to SEDATE MY SORRY ARSE. Which, I did willingly, from the drug store I call my medicine the dosing advice of the good doctor. I proceeded to be "sedated" well into the afternoon Friday, waking into consciousness only long enough to be certain I had notified my work I would not be in.

If this experience could in anyway be compared to a "bad trip", as sure as God is my witness, I would NEVER EVER take a hallucinogen (LSD, etc.)...and, of course, I never HAVE taken drugs of this class, so I have no idea what deliberately inflicting such an experience on myself would be like. I DID take enough benzodiazapines and tranquilizers to knock down a large elephant...very fortunate to have had these on hand. WHY do I have these on hand, you ask? Because over the past few years, I've had every drug known to modern man thrown at me for this symptom or that ailment. And, as is typical, I comply with the initial request to TAKE the pills...once or twice...then abandon the costly candy deciding the original AILMENT is easier to tolerate than the SIDE EFFECTS of the drugs.

WHICH brings me to my idea of needing to consult my Magic 8 Ball...drugs...MS treatment options...longevity versus life quality...and whether or not to roll the lucky dice and simply FLUSH all this MS crap out of my system and start anew?

My jury of one in the courtroom of my head has been pondering the evidence presented this past week. Was it the Percocet/narcotic that tipped my scale into utter madness? Doubtful...I've taken this drug many times for pain before...but I suppose it "could" have caused an adverse reaction. Was it the lack of sleep I have been experiencing DUE to body pains in the night that caused me to want to howl at the moon? Maybe...but I've certainly been far more sleep deprived than this past week...and never ONCE had a similar experience (paranoia and visual hallucinations with severe sleep deprivation in the past...but that's an entirely DIFFERENT post!) not likely. Did the Tysabri set me sailing aboard the banana boat? I don't know...I've now had a total of 6 lifetime doses of this drug without ever experiencing the likes of symptoms I did this week...and NONE of the FDA literature lists "Batsh!+ Crazy" as a possible side effect! Have the lesions in my frontal lobe finally created enough space for misfiring synapses? I think THAT explanation...blaming it on too simplified. Have I finally traveled to the edge of my great mental abyss and peered into the black hole of mental illness? Doubt it...don't think I'd be "back" talking about it if this were true (those that know me, hold your tongues!).

So what DID happen? What precipitated this "event"? I honestly don't know and I doubt anyone could clearly TELL me either. It felt extremely "biochemical" in if out of my a heart attack you didn't know was lurking in the veins or a diabetic insulin reaction only reversed by glucose. And because I have worked for 22 years in the psychiatric field, I believe I am allowed to weigh in an "expert" mental health opinion, which is this: I AIN'T NUTS.

What I DO know is this (after consulting "the Ball")...I am NOT willing to have this experience again if I have any say or control in the matter. I may NOT be able to control my MS (although I AM looking into the idea using mental imaging, etc), but I DO have control over how I choose to treat it and the symptoms Multiple Sclerosis bestows so graciously upon me. What I cannot answer for myself at this time is, HOW to go about changing not only the physical components of my MS, but the psychological ones, belief system, which incorporates Western Medicine as well as my fears of NOT treating the disease and being unable to remain employed due to out of control symptoms.

What a crap shoot. There's no manual with footnotes on the "rights or wrongs" or predictive futures based on this or that decision. If I don't stay with the Tysabri, do I risk a sudden and severe worsening of what has already been labeled "aggressive MS"? If I stay on the Tysabri, do I risk untold permanent damage yet to be discovered in the human experiment? If I stop taking Advil/Percocet/Zanaflex/Baclofen and all the OTHER assortment of "as needed" medications that relieve MS symptoms enough to let me FUNCTION as part of the working world, will I simply curl up in a ball and give up? (And for those of you I do NOT take ANY of these medications on a daily basis, but there are times when they are the only thing that relieves a symptom that might otherwise keep me immobilized in bed.)

This week has certainly caused me to question many things...perhaps my "pseudo-insanity" cleared out a space in my mind to THINK more clearly. But these are the thoughts/questions rolling around in the creases of my brain and I've come to no solid conclusions or answers...only more questions.

How did YOU come to the treatment conclusions (or decision NOT to treat) you have made in dealing with your MS (or any OTHER life-altering disease, for that matter)? Where do YOU find your personal answers?

Now, back to the Magic 8 Ball...I have to decide what to eat for supper...

Wednesday, May 14, 2008

Just What I Needed...

It came in the mail today...I kid you not. Well, at least the ENVELOPE in the picture came in the mail today...I (of course) added the "extras" to the pix in irreverent only I can. LOL

Too bad I hadn't received that envelope YESTERDAY when I was REFUSED my Tysabri infusion. Yep, you read that right. My HANDS keep me from receiving my Tysabri yesterday...well, my COMPLAINT about my hands and the extraordinarily irritating Dr. She Who Will Not Be Named did. I guess the envelope really doesn't say, "bless the hands", but instead, "bless the person who's hands"...must be some kind of God clause. I can hear my Maker now saying, "I don't DO specifics like hands...whaddaya want from me anyway? I blessed YOU, didn't I?!?"...sigh.

If you're wondering what in the hay I'm talking about right now, you'd best read the post right before this one about my mannequin hands (or, simply shut down the puter and step away from your can only go downhill from here!)...the plastic-coated, numb hands I awoke with on Monday morning with the "zapping" electrical impulses down my arms? Yeah, THOSE hands...the one's I'm gingerly typing with right now (thank God for spellcheck...there...I've said a prayer).

I stayed home from work on Monday because I "thought" I was beginning to come down with something...something cold/flu-ish-like that might render me unfit for my Tysabri infusion on Tuesday...and then there was the most unusual sensation in my hands. And while I'm thinking about it, thank you to ALL OF YOU who generously left me comments on the "mannequin hands" post regarding YOUR experiences with similar was/is very comforting and much appreciated. But I digress, as usual...

Sooooo...I stayed home from work on Monday in an attempt to "rest" up and strengthen my immune system for the on slot of an IMMUNOMODULATOR on Tuesday. When I awoke on Tuesday, my throat and stuffy head felt much improved, but my plastic hands remained...well...PLASTIC and numb. Simple things like running hot water for a shower had to be delicately tested with other body parts to insure I did not SCALD myself (trust me...when I did my dishes, my beet-red hands were worse for the wear due to far too hot water being used!) FEET were NOT happy being used as replacement tools for my hands. Thank God (there's that "prayer" again) I could/can still grasp with my hands, otherwise feeding time could have been most exotic (or just plain circus-freak-crazy bizarre, but I'd like to think "exotic").

I promptly went in to my infusion appointment yesterday with (I'll just call her Koko...she's there to keep watch out for me in case I happen to "miss" any attempts to medically KILL me!) my friend in tow and plunked down in the Crate & Barrel office of Dr. She Who Will Not Be Named. The infusion nurse entered and casually asked me if anything had changed since I was last there for Tysabri in April...I "casually" mentioned my recent problem with my hands...she casually left the office room without warning.

The next minion of Dr. SWWNBN to enter my room was the angelic ARNP...concern was about her face. More questions about my hands and then PIN POKES! Fortunately for me, I couldn't FEEL most of them, but I tried desperately with my eyes closed (drat her anyway! way to cheat on the test) to "guess" which end of the pin she was jabbing me with...after all, I still CAN feel pressure in my hands, just not pain or temperature on most of the surface of them. This is when Koko turned on me.

"Just tell her (ARNP) the truth and stop trying to GUESS what she's doing," fell out of Koko's mouth. Oh, the pain of betrayal! I HAD to open my eyes to GLARE at her, and so, I did.

As my eyelids flew open to send deadly daggers across the room at dear Koko, Dr. SWWNBN POKED her head in the door to shout orders...this "poke" I felt to my core. In a whirlwind of flurry, I was suddenly denied my Tysabri and told I had to get an urgent MRI of my cervical a surgical incision, Dr. SWWNBN cut into the conversation and immediately withdrew her knife and disappeared while I proceeded to metaphorically gush blood from my wound. Ouch.

Events that followed for the next several hours are a bit of a blur...I was dismissed from the office (actually I kind of blatantly left without saying "goodbye" while the angelic ARNP tracked me to the elevators and begged me to wait long enough to get my MRI order), sulked my way home, and waited for a 7:45PM (yes, that's pee em!) urgent MRI. I tried to argue my case in point at the elevator with the case being this: The only drug I've got left in the regimen of available MS drugs is being withheld from me because of a new symptom that I could have just as easily not mentioned and that NO MRI is going to tell the good doctor anymore than she already knows...I HAVE MS!!!!!! The sweet ARNP tried to calmly state a case for "infection" and "PML" and...I sharply countered all of the excuses, to which she HAD to eventually agree with me. I even used the, "I'm no doctor, I just play one on the Internet...but even I know blahty blahty blah".

I went for my 7:45Pee Em MRI, got my personal disk copy, and returned home to stare at the results. I could not even FIND my previous spinal lesion (which, I believe God answered my "prayer" and HEALED it!), and the only thing that screamed "that ain't right" was/are the bulging discs in my cervical spine...the same bulging, degenerative discs that have been there for 100 years (OK, I exaggerate the hundred years thing...but they HAVE been there at least since my first MRI in 1998!).

Now, before all y'all start commenting about my incompetent neurologist, let me fill you in on a tiny part of the story I've left out (left out to make myself look good and embellish the story...ahem...). She DID email me TWICE yesterday evening, telling me to call her immediately so we could "talk"...most likely to 'splain her Lucy-fied self...but I simply wasn't in the mood. And my moods DO rule! I was sorely disappointed in not getting my Tysabri and wallowing in my own much so, I couldn't be "bothered" with any conversation of explanation. And she DID call me early this morning (thank God I turn my phones off while I sleep...prayer answered AGAIN!) and left a message to inform me I NOW HAVE A DEGENERATIVE ARTHRITIS...per the radiologist that she also called early this morning to consult with. Oh, and I COULD get my Tysabri infusion the hospital I DON'T like infusion center. Actually, I believe her EXACT words typed in a follow up email were "It’s your discs that are causing the numbness, so please come in for your tysabri today and stop being so f-ing stubborn." Yeah, that's a cut -n- paste directly from the email...ahem...

So, to make a long story even LONGER, I DID get my Tysabri infusion after all today. Unfortunately, I also DID find out I get to add yet another lovely disease to my list of genetic mutations...degenerative arthritis...if that really IS it's name/diagnosis! I'm still not convinced, based on the EXPERT'S comments (that would be all y'all in the comment section of this blog), that my mannequin hands are not simply due to MS. I guess, as with anything unholy and pertaining to Multiple Sclerosis, time will tell...sigh...

Now that I really LOOK at that letter/envelope I received today, I may have to put a "return to sender" on it and drop it back in the mail...after all, the back side printing is CLEARLY addressed/written to "Jesus" and there's no one living at my address by that name...

**Footnote: The author/blogger fully accepts responsibility for all irreverence in this post and the guarantee that said author will most likely smoke a turd in hell for the content written**

Monday, May 12, 2008

My Mannequin Hands...

Have to keep this short and luck would have it (on the day before my second Tysabri infusion, which is Tuesday), I tossed and turned all night last night with a back/neck ache...only to wake up in the wee hours of the morning with MANNEQUIN HANDS.

Yep, they "feel" plastic...if "feel" is really the word to use. My hands might better be described as NUMB...except I still can "feel" them, if that makes any sense at all! My skin feels bizarrely plastic or glove-like over my hands, while I'm having electrical "zaps" shooting down both arms...not painful zaps, but more like tingle-ee zaps. WOOT?!?!

Consequently, I cannot trust my faulty skin on my hands to register anything like temperatures or pain...yet they MOVE and can grasp and I can peck this keyboard by simply pushing down on the key until it hits bottom while using my eyes to make sure I haven't typed a bunch of the same letter (like "eeeeeeeeeee"!) with my finger pressure. When I put my hands on my face, my fingers feel cold to touch...most unusual.

I thought yesterday I might be getting a cold as I had head congestion and body aches...turns out, whatever THAT was has settled nicely in my hands and arms. I just hope the rest of my skin/appendages don't develop this plastic feeling. If I DO become completely plastic, look for me modeling the latest summer wear in a store front near you! I'll be the mannequin in the window that's cursing without moving my lips...LOL.

Anybody ELSE ever have THIS bizarre MS symptom (at least I "think" it's MS?!?)? Do tell...

Sunday, May 11, 2008

"Unpopular" On Mother's Day...

This is a picture of my mother and I...I don't have many pictures of the two of us together, which strikes me as a bit "odd". But then again, my family had a touch of the "odd", so I just accept it (and no cat calling about my mother's sexy legs either, MDMHVONPA!). LOL

My mother ALWAYS taught me to be much so, I maintained my fair share of worry and angst growing up with her. SHE was a very responsible woman...worked her entire life (right up until the day she died...fixing breakfast for her family)...and was a fierce teacher about taking care of your own. My family would have been considered quite poor financially when I was growing up, but I was never aware of this fact until I went to school. In grade school and high school, other kids had dresses and jeans ordered from the Sears catalogue, while my mother sewed all of our was cheaper. My first store-bought dress was for my 8th grade graduation...times were good in 1978.

But enough nostalgia...

Today, I was listening to some blow-hard show of women from the Democrat and Republican parties on PBS...the show was playing in the background (like bad Muzak)...debating about whether or not the government (in the USA...clarification for you overseas readers!) should do more to subsidize daycare for families. And as I mindlessly listened to these women, who obviously have or are currently raising children, I realized I was feeling myself become more and more disgruntled on MOTHER'S DAY...more and more "pinched". So much so, I imagine the sound of my anus tightening could be heard in the next county! I became so irritated to the point I had to shut the BoobTube off and flip on some hardcore Pat Benatar, singing, "Hell Is For Children" and "Hit Me With Your Best Shot"! is where I become wildly UNPOPULAR ON MOTHER'S DAY.

Let me first preface the following with my personal belief that we, as human beings, have become a rash on the butt of Mother Earth. We have procreated and inundated this planet with a population EXPLOSION running a close second race only with E. Coli and other prolific bacteria (you know? the one's we can't KILL?!? MRSA???). It is estimated that the current PLANET population is somewhere around 6.6 BILLION, breathing, eating, and crapping homo sapiens (not to be confused with homo sexuals...although, I "hear" this group is an ever-expanding populace with an "agenda". LMAO), and the United States has crammed over 300 MILLION of us bipedal primates (excluding the apes, of course!) between its borders and shores. And we, our arrogant "EWE-S-of-EH-ian" selves seem to think 300 MILLION is an OK amount of people to rape this tiny portion of land "we" inhabit...I mean, let's face it. We are NOT CHINA, who has 1.3 BILLION scrunched between its borders...that's ILLION with a "B"!!!

Our population, both in the United States and worldwide, has grown so out of control, we can no longer FEED 6.6 BILLION MOUTHS. Mother Earth only has so much soil available to grow our food upon...and we've contaminated the HELL out of what we DO have. The disparity between the so-called group of "HAVES & HAVE NOTS" has expanded its gap so wide, we can no longer even communicate with each other without having to shout across the great abyss that has formed between the two groups. Water is running scarce, children are starving to death, our air is barely breathable in some parts of the world, illness and war are at all time high levels of concentration, and...

And...And STILL, we continue to POPULATE. We continue to BREED like rabbits in the springtime. We continue to spread ourselves like an ever-inflamed and swollen RASH ON THE BUTT OF MOTHER EARTH. And frankly, I'm just waiting for dear ol' "momma earth" to apply the heavy ointment and rid herself of the 6.6 billion itch (that's illion with the "B" and itch without it")!

But what does my rant, subsidizing daycare in the USA, and Mother's Day all have in common? Not much, I suppose. LOL Except, I have grown weary of paying skyrocketing property taxes, sales taxes, federal taxes, and income taxes to support OTHER PEOPLE'S CHILDREN. I didn't BREED. I don't have children. Not one of the 6.6 BILLION on the face of this earth is mine! I kept my legs closed (oh hush now, you naysayers!...there WERE offers!), educated myself, and made an informed decision NOT to bear children...for MANY reasons (but probably the biggest being the possibility of birthing something like the movie, "Humanoids From The Deep" gene pool should have been drained a long time ago).

Yes, it's true. I DID take advantage of Public School...all twelve years of it. And I DID earn scholarships and grants to go to college, using the uppity "white man's welfare" (PELL Grants, etc.). And I DO drive on public roads, use public parks, drinking water, etc. I HAVE paid for these luxuries and I CONTINUE to pay for them. But I'm just having a hard time swallowing having to pay for OTHER PEOPLE'S CHILDREN...other people's child daycare...because THEY chose to squirt the little spawn out! "If you can't raise the berry, don't pop the cherry" is what my nasty, old aunt taught me (who had 2 kids of her own). Sorry...channeling my Aunt June!

Personally, I think I should get a government KICK know, a tax incentive for NOT HAVING CHILDREN. Pay me not to breed...never mind the fact it's probably virtually IMPOSSIBLE for me to bake a bun in my oven at 43...I had a good 30 years BEFORE now that I think I'm owed back taxes on! Pay others not to procreate...I think THIS idea would catch on better than sex education in our schools! Could you imagine how many potential teenage mothers and fathers "might" make other choices if they got PAID not to produce offspring?!? Yeah, you're right...sigh. Sex rules, and probably what would increase would be the rate of teenage abortions...something ELSE I'd have to subsidize through my taxes.

AWRIGHT...I've gone on long enough here and made more possibility for hate email to occur. Simmer down now...I'm kidding...sort of. LOL But I'm NOT joking about feeling angry at our government(s) for trying to put a dollar band aid on a problem when we've KNOWN this problem was occurring and CONTINUES to expand in our country. Subsidizing daycare in this country will NOT be an end-all to the financial burden facing families and particularly WOMEN who have children in the USA. It will NOT relieve a mother of the daunting task of trying to FEED the little mouth staring up at her. It will NOT make it easier for teens to stop having babies before they've outgrown their OWN childhoods. And it certainly will NOT increase the dwindling supply of natural resources that is occurring because of our over-population, which is the ROOT of the problem.

But hey...HAPPY MOTHER'S DAY anyway...

Wednesday, May 07, 2008

Prone To "Accidents"...Destined To Complain...

I have an "acquaintance" who is prone to accidents.

Now, let me first preface this post with the understanding I PERSONALLY have had my fair share of bizarre/unusual mishaps, and none that I am proud of OR willing to disclose to the general have to know me well for quite some time before one gets to hear my stories of flipping screwdrivers in my eye or being blasted across the room by water pressure from a foiled plumbing repair mishap! And, although not so funny at the time of the "accidents", some of them DO make for great dinner conversations after a few drinks (which I don't imbibe, but when my friends are plied with alcohol, ANYTHING I tell them seems Hi Larry Us!). My "accident" stories are usually only told as a means of humoring myself and any unsuspecting audience around me. I accept my fate and the possible outcomes/pain that have accompanied my "accidents"...and I usually only tell about them once the pain (both physical and psychological) has subsided.

But, back to my "acquaintance" loosely described friend is extremely prone to accidents. So much so, that it is expected they (I'll be using the "they" pronoun so as not to disclose the SEX of my "acquaintance" and avoid future lawsuit!) will sustain some sort of "accident" almost every other week, live to tell about it, AND (and here's the main meat of this post) COMPLAIN about the pain incessantly that was seemingly inflicted by their own stupidity!

OK...accidents DO happen on occasion. We've all had them. A car veers out of nowhere and runs over our vehicle hood (ahem..speaking from experience here). We fall. We trip and tumble. We cut ourselves with super sharp cooking knives...ACCIDENTALLY. There is no divine intervention deliberately TARGETING us for these events...hence the word "accident". But the only explanation I can come up with is my "acquaintance" seems to seek out these "accidental" situations. Let's face it...NO ONE CAN BE THAT UNLUCKY OR UNFORTUNATE.

My "acquaintance" appears to be in a constant state of "injury"...there's always some type of prolonged pain from each of these "accidents" that carries them through until the NEXT "accident" occurs. Then a new pain develops or an exacerbation of an old pain resurfaces and I am somehow vicariously FORCED to live through the retelling of the "accident" and the pain descriptions. Worse yet, I am often repeatedly told about "their" pain...the suffering...the excuses for not doing this or that because of some pain from the latest "accident".

I am a nurse (that's previously been established by my frequent reminders that I only play a doctor on the Internet, hence rendering me without any true medical knowledge whatsoever). I have witnessed many people in pain, both physically and psychologically. I would NEVER deny someone their experience of "pain" because it is theirs, not mine, and I really CAN'T know what they feel because it is not happening to me. I have also seen countless others USE descriptions of pain as a means of avoiding certain life activities or to gain something else (such as pain medications because of a raging narcotic addiction). It is very hard to gage another's experience of pain because it is subjectively FELT, not seen. Physical pain is the result of a neurotransmission of signals from an area of the body to the brain and these pathways are invisible to the eye. Psychological pain is quite similar...a result of emotional chemicals transmitting to the brain causing disturbance.

My "acquaintance" appears to be, for all practical purposes, a person who uses their description of pain to avoid (sometimes work or activities) or gain (sometimes benefits of narcotics, time away from work, excuses to not complete tasks, etc.)...I say this based on the frequent patterns of BEHAVIORS I have witnessed surrounding their pain(s). And I have worked in psychiatry too long not to abide by the age-old adage, "If it looks like a duck, quacks like a duck, and swims like a duck, it's probably a duck!" My experiences with my "acquaintance" leads me to believe they ARE a duck, so to speak.

Now, back to me...the all important piece of this story. LOL Anyone who has followed my antics here on CHEESE is aware I was diagnosed with Multiple Sclerosis because of PAIN...horrible neurological pain in my left arm. I continue to experience PAIN in varying levels of discomfort because of my MS...whether it is due to spasticity in my lower legs, banding around my torso, stiffness in my joints, etc. PAIN is a constant part of my every day life. And I will often write about my experiences with PAIN here on BrainCheese--not to complain about it--but to share my EXPERIENCE with it. Because I fully believe in using this blog as a means of sharing and talking about my experiences with MS as a way to educate, corroborate, and hopefully provide information that might assist another with MS as well as letting others know (with similar experiences) that they are not alone. I am not, by nature, someone who readily discloses any of my physical discomforts to the general public in conversation however, unless invited to do so by a caring or concerned friend. I don't like "whiners" and I would hate to think I am/will become one. I DO believe what we focus on BECOMES our focus and I would rather not INVITE more physical pain into my life.

Often times when friends tell me about their pains (both physical and psychological) I am apt to want to help them in some way...offer any medical/nursing advice I think might provide relief...but mainly LISTEN to their experience. I feel badly for them and I also feel NO NEED to try to "one up" them with some sort of a "well you think THAT is bad, I have **blank**". I genuinely feel badly they are in discomfort.

But when my "acquaintance" begins to lament about a new pain? Well...frankly, I want to scream at "them". I have visions of throwing "them" down a flight of stairs just so I can be certain any new pain "they" feel a need to tell me about will be real! I loathe listening to "them" tell about their latest pain. I feel angry. I feel entitled. I want to yell, "I have MS, dayumit! You have no excuse for your alleged pain!" I want to justify my pain by providing a description to "them" just how bad pain really is...and so on. I have a visceral response to my "acquaintance" and "their" constant pain complaints.

Now, trust me. I have tried all of the typical psychologically *healthy* responses to my "acquaintance"...I have tried reflection, redirection, deflection, deep breathing, compassionate listening, yadda yadda...this is what I am TRAINED to do. I have even tried the not so *healthy* responses of avoidance, ignoring, confrontation, blatant requests to NOT talk to me or mention "their" pain in my presence, MS guilt responses, etc. I imagine my gut reaction to this "acquaintance" talking about "their" pain is similar to an MSer with severe fatigue having to listen to someone without MS talk about how tired they feel. IT'S NOT THE SAME, IDIOT!

Life circumstances require me to continue to be in the presence of my "acquaintance"...there is no possibility of avoiding "them" entirely. And I am working on understanding the part of me that cannot accept my OWN symptoms because they are not visual like a broken bone or a cancer...the part of me that frequently questions if my MS is real because I can't SEE it...the part of me who still believes on some level, if I only PUSH myself harder, I can overcome this...the side of me that can fall into beating myself up with a mental stick because I am being "lazy" instead of experiencing symptoms of MS...the part of me that cannot medically understand how several blown out lesions in my brain could POSSIBLY cause the amount and frequency of pain I experience on a daily basis...the part of me that feels inadequate or flawed BECAUSE of my MS and experiences guilt for not being "enough"--for not being stronger...the part of me who secretly WANTS someone to acknowledge my pain without me having to declare it. THE PART OF ME THAT WANTS SOMEONE TO FIX THIS AND FEELS FRIGHTENED I CAN NEVER BE REPAIRED.

So, my question to YOU, dear CHEESE-ERS is this: How do YOU handle balancing your own experiences (whether with fatigue, pain, ambulation, level of disability, etc.) without comparing the experiences to others in a negative way? In what ways do YOU respond to seemingly unfair circumstances in your life, both helpful/healthy and unhealthy? And of course, I welcome any OTHER comments you may have related to my rambling topic above, too! ...

Tuesday, May 06, 2008

Is It In The Weather?...

Remember THIS post? The one about the billboard advertising going on in the Seattle area...sponsored by the local Greater Washington MS Society, where several billboards are asking the question "Is It In The (**blank**)"? The advertising campaign is designed to raise awareness about Multiple Sclerosis and also point out the COLD, HARD FACT all those donated dollars spent on MS research for the past several years STILL have failed to find a scientific CAUSE for MS...OK, maybe the ads are REALLY just to raise awareness about MS. I doubt the "Society" really wants anyone to focus on our lack-of-a-cause-or-cure factor. LOL

Well, as luck would have it, SAVE your next planned donation to the "Society" (and use it to stimulate the economy...hehe...which reminds me. WHERE'S MY DAYUMED CHECK, GEORGE?!?"), because I had a scientific EPIPHANY this morning as I struggled to pry myself out of my bed in one, solid, board-like mass. I discovered the answer to those billboard questions...IT IS IN...MY BODY!

That's more millions are needed on this particular set of research questions. Multiple Sclerosis is in MY BODY. Oh, sure...I STILL don't know what's CAUSED it to be in my body, but by God, it's there!

Pardon me for sounding a bit crass and perhaps even discounting to some of the newly diagnosed MSer's out there...but right now in this stage of my life, I really don't CARE much "where" my MS originated or why...I'm pretty much living in the here and now of "it's here". It is highly doubtful in my life time that I will ever SEE a cure for this disease (because there's too much money being made off the ILLNESS portion of it...but that's fodder for another post), so spending millions of gazillion dollars on researching the disease ORIGIN is a moot point for someone like me. Finding the "cause" will possibly prevent someone ELSE from having to live with MS, but it is doubtful this discovery will ever improve MY life WITH MS. Yep, I'm selfish that way.

**Jumps off soapbox**

Today, I woke up (actually multiple times during my restless night, too) feeling as stiff as a board. I could hardly move, let alone do a graceful dismount from my bed. I know, I know...all y'all are shaking your heads with that "I told you so" look and "tisk tisk-ing" me for overdoing it on my days off from work. And still, others of you who practice in the psych world, are wondering if I have seriously developed a strong case of "Monday morning work aversion"...otherwise known as "Blue Monday"...that mysterious employment illness that seems to strike the not-so-mentally-sound when they are forced to return to work following a weekend or holiday. It is a psychological somaticization that manifests as a physical illness, thus rendering the person incapable of going to work as expected.

Well, poo poo to all of you! I believe my current state of "board-om" is the direct result of a combination of weather pattern changes/Tysabri infusion drain/overdoing it/poor sleep. There...the "cause" STILL remains a mystery...much like the "cause" of MS.

But regardless of the "cause", just like the disease itself, I am left to LIVE WITH IT and try to make the best out of my situation. And maybe...just maybe if I try hard...I might LEARN something from the situation and do things differently NEXT time. (But I still secretly think Baby Jesus is mad because I went gambling on a Sunday, and NOW I have to pay for my transgressions. LOL)...

Sunday, May 04, 2008

A Whirlwind Week...

As many of you know (and have grown weary hearing me LAMENT about it!), I have a somewhat unusual work schedule...actually, to say the word "unusual" is putting it lightly. I work for my local government doing legal/clinical mental health assessments for, not only is my SCHEDULE unusual, my job is, too.

But, for the handful of us that do this type of work (AKA, my colleagues), our unusual schedule makes perfect sense to rotates back to it's beginning every 7 weeks. And, every 7 weeks I get a six day furlough of time AWAY from the hectic pace of my job...sort of like a mini vacation. Except I usually have to spend the first day or so of my furlough RECOVERING from the demands of my job. Sometimes more days than that are needed, depending on how ugly my MS has been.

I started my current six-day stretch off on Wednesday of last week and I won't return to work until Tuesday afternoon THIS week...and, frankly, I think it's a good thing I AM returning to work in two days as I really could USE THE REST! past six days off have been a whirlwind of activity...unlike how I would "normally" spend my time away from work (either drooling on the couch or sleeping/resting).

I DID take Wednesday "off" last week and completed some necessary maintenance activities around the hut, like laundry, washing dishes, etc. Then on Thursday, I managed to whack down the forest of grass growing on the hillside (which usually requires a combination of acrobatics, super-human strength, and prayer!) in the morning and make it out to a movie matinee in the afternoon with my neighbor. Yes...I really DID go to a movie! I know, I absolutely off the charts is THAT?!? Thursday evening found me grilling steaks for Saint EB and I to feast upon while watching horrible reality TV (Saint EB doesn't HAVE a television, so she becomes corrupt at the hut, otherwise known as the "Den of Degradation").

I managed to make it between my sheets (I don't think that line came out quite right...yes, I was ALONE!) before the birds started singing in the wee hours before dawn and set my alarm for Friday morning festivities. Friday found me hopping the Metro bus (more like throwing myself up on the steps, but hopping sounds so limber) to downtown Seattle and meeting Saint EB AGAIN at the famous Pike Place Market...a Seattle landmark of outdoor produce shops, flowers, and artist wares. We spent several hours touring the Market because I have not taken the time to visit the place for many years...truly a travesty on my part. I found the flavored cooking oil I remembered buying there (sold ONLY at the Market) and Saint EB looked at (but did not touch or buy...she's on a restriction!) earrings and other doodads. We then purchased some fresh out of the oven bread, fruit, cheese, and drinks and walked down to the ferry terminal on the waterfront to board one of the ferries to an island. We took the Bainbridge ferry (because it is a short route) to the island and ate our lunch on the vessel (the poor man's idea of "boating"), disembarked (I secretly delight when the ferry officials use big words over the loudspeaker like "disembark" to tell all the tourists and locals basically to get their ARSE off the boat!), and re-boarded immediately for the trip back to Seattle. It was somewhat overcast, but a lovely ferry ride all the same.

Once we "disembarked" in Seattle, we then trudged UP the hill from the waterfront to the Bon Marche (I will NEVER call this store "Macy's" even though "Macy's" prefers I do...they bought out our local "Bon" a few years ago), where we went on a gruesome clothes shopping tour. Have I mentioned I HATE to shop for clothes??? But, I did it anyway as many of my tents I wear are beginning to fray. I did find a few needed replacement pieces in the bowels of the Fat Ladies Department (why do department stores always put the Fat Ladies section the furthest away from the entries and generally in the basements next to the janitor's closet? Just wondering...), which was a relief. After the shopping nightmare, we again boarded a Metro bus to our favorite pizza joint and dined on salads...rabbit food truly sux when traumatized by shopping, but I managed to eat healthfully AGAIN. Saint EB was kind enough to drive my dragging arse home from supper and I collapsed in the hut only to be dismayed, wondering why the maid had not cleaned anything while I was gone? Silly cat...

On Saturday morning, truly at Dawn's Crack (she's baaaack!), my eyes flew open in anticipation of my very first maiden voyage to the opening day of boating season on Lake Washington. If any of you are familiar with Seattle, we have a tradition here of "opening" boating season...why, you may ask? I don't know really...we just "do". LOL I'm not a sailor, so I just go along with it. I was invited to spend my Saturday morning and afternoon aboard the Merrinuts Yacht (which is really a sailboat, but anything over the size of my bathtub seems "yacht-ish" to me) and I had to be on the dock at the University of Washington by the fine hour of 9:00 AM (remember...I don't "do" AM well). From the dock, I was precariously "ferried" (in a dingy with a motor...I CAN swim, but the lake water is effing freezing!) to the Merrinuts Yacht, where we hung out in the cold and rain and watched the Parade of Boats for the next several hours. I didn't actually begin to FEEL cold until around the 3rd hour of the event...and then, it hit me...not only was the lake effing freezing, but the wind chill OFF the lake was, too! My cheeks are now wind-burned with a bit of a glow and looking like I've been on a drunken "toot" for a week.

However, in spite of the inclement weather, I had a FABULOUS time aboard the lovely sailboat, spending time with another two of my treasured friends...we laughed heartily, ate wonderful homemade ham sandwiches and hot chocolate, and mocked the pompous rituals of the "yacht-ers"...all dressed in their blue sports jackets, white pants, white shoes, and captain sailor's hats. I cannot FATHOM how cold THEY must have been in their thin, little outfits! I had LAYERS of clothing the white trash I was bred and born to be.

Oh, but I am not FINISHED with my tales yet, my pretties. Today...TODAY, I once again set an alarm for this Sunday morning so that I would not miss driving to another friend's house to spend the day at one of the local tribal casinos! Yes, it is true...I WENT GAMBLING on a Sunday...reserve my room in the hellfire now.

Another sweet husband and wife couple/friends of mine invited me to tag along on an adventure to a casino...I was excited about this prospect and had high hopes of paying off my mortgage with a little extra "traveling" money left over (or perhaps enough to purchase one of the massive YACHTS I saw yesterday?!?). Sigh...let's just say, I don't think Baby Jesus was all that happy with me GAMBLING on a Sunday. My only saving grace (saving face) comment I can make regarding my "winnings" (or lack there of) is to try to put a positive spin on the adventure and hope my DONATION to the local tribe was enough to purchase a few vaccinations for some of the Muckleshoot children!

It's now time for me to crawl my weary body back in bed as I have yet ANOTHER appointment in the morning on my final day away from work. But before I go, I'm absolutely CERTAIN all y'all are wondering how my MS body is after all of this?

HEY! WAKE UP!!! I've got one last thing to say/type!!!! My body? Well, other than the usual aches and pains (and a few extra that came on following my Tysabri infusion last month...sore joints, muscle stiffness, etc), I'm not doing half as bad as I expected I might! I was prepared to have to stay in bed all day tomorrow (or return there following my appointment)...the price tag on my 5 day adventures. But, at least for tonight, I'm still kicking and hoping I will wake up tomorrow STILL feeling somewhat refreshed...right after I bash my vile alarm clock against the wall anyway. And who knows? Maybe I'll even have some time to get caught up on my blog reading (and please don't use any big words in your blogs tomorrow...I don't think my brain can take it after what I've put it through the past few days!)...