Sunday, May 31, 2009

Sunday Communing...

Every once in a while, I crave a spiritual awakening...I find myself slipping into old patterns of dysfunctional behavior and feeling *stuck*...like my soul is constipated.

So, today I forced myself out of the hut (weary bones and all) and into my yard...I find such comfort and nurturing being in the dirt. It's as if my body recognizes where it has come from and where it will eventually return. Dust.

I live in the city, so it is often quite difficult for me to tune out the sounds of the pavement and really listen to the sounds of nature...it took me a while to deaden my awareness of the traffic noises, garden implements, and neighbor kids playing basketball. Such are the ears of a constipated soul...hypervigilant in listening to the unnecessary.

I performed some of the needed tasks of maintaining my flowers and other plants, providing water and fertilizer, and felt the warm sun gently heating my head and shoulders. I couldn't seem to shake the uneasy feeling in my body or the pain that has become a constant companion. Even with a lessening awareness of the city noises, my mind continued to jump from topic to topic, reliving any and all of my recently perceived slights. I was disheartened my outdoor experience was not providing me the proper laxative to move my soul into a spiritual awakening and I almost abandoned the excursion to return to the monotony of indoor life.

And then, I heard it. I even felt it...it was the tiny, but powerful flutter of a humming bird zipping to and fro near the rose bush I was watering. It came so close to my face, I could feel on my cheek the small current of air its wings created! Then, much to my delight and surprise, the little bird, barely bigger than my thumb, landed on one of the stems of the rose bush.

The humming bird just sat there staring at me...and I, too cautious to move a muscle not wanting to frighten the little creature away, stood mesmerized in the bird's stare. I don't know how long we remained captivated by one another...a minute, ten minutes, an hour? It seemed like an eternity yet only a brief encounter I imagine.

Eventually my new friend flew off up into the sky and I sat down on the ground, keenly aware of the stress and ache in my bones. As I closed my eyes and turned my face into the sun, I began to notice the faint smell of the rose bush just beginning to bloom, I heard the chirping of a robin in a tree near the fence, and I could just make out the quiet buzz of a bumble bee searching for food among the Rhododendron bush. I felt my body soften somewhat as tears fell silently from my eyes. Finally, release. My soul was letting go of the garbage packed tightly and accumulating over the past few weeks.

The world is my *church* in which I must always return to commune with Spirit/God and Nature is the pulpit of the sermon...I am oddly so astonished each time I forget this simple fact.

Today, the humming bird was my call to worship...and for this, I give great thanks...

Friday, May 29, 2009

The OTHER "CHEESE", Children!...

Sure has been a week of weirdness out there...the same has held true here at BrainCheese. I've had some remarkably bizarre searched key words this past week and some are SO incredibly *interesting*, I thought I'd share a few...in the form of personally addressing whoever the poor souls are that are typing these things into their search engines and being sent here:

"herion myserable cheese brain": I believe anyone who can't SPELL the word *heroin* should probably not be SEARCHING for information about it...especially when they are most likely HIGH on it! I cannot tell you how many times folks searching for information on the latest street drug called "cheese" drift over here to this Multiple Sclerosis blog mistakenly...it's too many to count. Perhaps this is because the average age of a "cheese" user is about 14. That's right..."cheese", or the latest fad to hit the high schools and even grade schools, is a popular blend of Mexican black tar heroin and Tylenol PM, crushed up and snorted via straws or a dismantled ball point pen by school-aged kids. Of course the ADULT-aged drug dealers who are marketing this deadly crap aren't always particular if they are using Tylenol PM or just any crushed up, over the counter antihistamine. It is believed the blend, selling for as little as $2.00/hit or as much as $10.00/gram, got it's name because the product's coloring resembles grated Parmesan cheese...or, creative minds think the name may have also originated from the Spanish street name for heroin, "chiva". However the crap got it's name, the message remains the same to school-aged children: It's cheap and it's a high...much like what old farts MY age used to refer to as a *speed ball*. The only real difference is, most people didn't die from *speed balls* at quite the alarming rate in MY day as kids are dying after snorting "cheese"! The drug is only about 4%-8% heroin and the rest is antihistamine and byproducts of over the counter medications. So, if you're searching this blog for information about THAT kind of "cheese", maybe that's enough said...I'd rather you babies stick to the kind of "cheese" you put on a sandwich or, heaven forbid, just SMOKE THE WEED! At least THC/marijuana has less likelihood of KILLING you.

"blowout diarrhea": Oh, seriously...come on? Are you KIDDING me?!? I KNOW I tend to stray where most fear to go when it comes to bodily functions on CHEESE...I just can't believe that search term actually BROUGHT you here! Are you searching from a cell phone or laptop for this information? Because I would HOPE to gawd you are seated on the porcelain THRONE if you are desperately looking for information about this topic and NOT stuck to your seat in an office cubicle somewhere in downtown Manhattan!! Really...most likely you would find more *user friendly* information just typing in the one word: d-i-a-r-r-h-e-a. I'm sure there are many medical web pages out there that could answer questions about "blowout diarrhea" far better than THIS blog. Unless, of course, you are searching for funny, anecdotal "blowout diarrhea" stories that most would be too embarrassed to tell in public...then you've obviously come to the right place!

"can I get numbness in my face from a window fan?": Dear person searching for this information...I don't usually give out advice here on CHEESE let alone MEDICAL advice. But I'm going to take a risk on this one and chance malpractice lawsuit. NO. you CAN'T get numbness in your face from a window fan...unless you stick your CHEEK or NOSE directly in the path of the whirling blades!!! If you'd LIKE your face to become numb from your window fan, I suggest you try this little maneuver: 1. Remove the outer covering of your window fan, usually called the *cage* or *casing*. 2. Turn your window fan on high speed, being cautious not to stick your fingers in the path of the blades, lest you also sustain numb fingers. 3. Lean into the whirling portion of the rotating fan blades with your face. 4. Keep a towel nearby to mop up any excessive blood loss should you need it. If your face does not become numb from excessive swelling within 5-10 minutes, I suggest you seek medical attention immediately. I am quite certain the numbing agent used by a physician to stitch your facial lacerations WILL achieve your desired effect. :-)

"before and after hair arrangement jokes": Mkay...this one completely stumped me...until I recalled posting a blog entry maybe last year regarding my 1/2 missing eyebrow. I don't think this topic is particularly *joke-y*...I'm MISSING 1/2 MY EYEBROW people! It's not an unusual fashion statement and I didn't create this phenomenon deliberately via trichotillomania (disorder where one PULLS their hair out)! It's from yet ANOTHER autoimmune disorder called *alopecia areata* (my freakin' hair just falls out in patches or strange places, like my eyebrow and eyelid). It's really NOT all that funny...unless you are my friend, "T", who likes to approach me with one index finger curved and placed over the area where the eyebrow should be on her forehead saying, "Hi, how ya doin?" Now THAT is funny! And there are the Groucho Marx glasses with the eyebrows and nose glued on them that another friend likes to tease me about wearing as a quick "fix" for my strange hair loss pattern...now THAT is pants-peeing funny!!! But you won't find any *before and after hair arrangement jokes* here...no siree...that would be crass and crude. And you all know what high level of sophistication I strive for here on CHEESE...

**Burp, armpit fart sound**

Wednesday, May 27, 2009

Monday, May 25, 2009

A Little Bit O' This -n- That...

I wish my mind were as compartmentalized and organized as that junk drawer above, but it's not...trust me...this frustrates me far more than it annoys YOU! For instance, should I be *disturbed* I FORGOT today was MEMORY-al day? Shouldn't I REMEMBER this?!? Isn't that the POINT?!?

I've had several emails lately that I've been meaning to respond to (with GOOD intention!), but just haven't been able to organize my sorry self to do so...SO, I thought I'd just use this format today to *communally* respond and hope all y'all will forgive me for my lack of proper Internet etiquette. :-( I'll leave out your names/identifiers where appropriate...unless I CAN use this information against you...then you're gonna get punked. Hehe.

From the mail bag (or wind bag...whatever):

SUSAN...the Susan who has traded emails with the likes of such a forgetful douche as myself...I CANNOT LOCATE THE LINK TO YOUR BLOG TO PLACE IT IN THE 100 MS BLOG LINK ON CHEESE!!! Where did it go? Have I totally gone to the dark side of dementia??? Yes, I forgot to write it down and now, when I search for it, I come up empty...sort of like my brain. Please, dearest...email me your blog page. Lest I have to travel to Nebraska and track you down (You're probably safe, because I think I've been banned from ever returning to that state after remarking that the state capitol building looked like a huge penis protruding on the landscape, aka, "The Penis Of The Plains"...LOL And yes, BlindBeard...you are safe as well.).

TO THE BOOTIFUL CANADIAN SEARCHING FOR INFORMATION ABOUT RiSoTRIENE...OK, this topic has exhausted me! Because there just ISN'T much information about RiSoTriene out there. I've even enlisted someone who I consider a personal Health Fitness Guru of Florida to assist me in uncovering what research/information there might be out there on RiSoTriene in the USA...Bubbie, of *Bubbie's Blog*...because she is from the "Blue Hair State" and everyone KNOWS Flo-ree-da is the home of supplements and nutritional facts due to the overwhelming population of retiree's there! Bubbie found an article about rice bran having high concentrates of arsenic in it (scary, but really? Doesn't EVERYTHING we eat have useless/potentially fatal crap in it?!?) and I uncovered a letter from the USA FDA to Healthy Living about RiSoTriene, telling them to cease and desist all claims that RiSoTriene will work like a drug to lower glucose levels and assist with Multiple Sclerosis symptoms...beyond that, I'm stumped. I even went to two local health food stores here in Seattle to inquire, and they stared at me like I was a circus clown at a funeral (I AM rather out of place at a *health food store* as it is apparent by my size and stature my "health" is not a high priority!)...they had no clue either. So, OF COURSE, this only makes me want to get some of this milled rice product/RiSoTriene and TRY it!!! Gawd knows I've been willing to try many OTHER VooDoo products that the FDA has approved (like most all of the MS Disease Modifying Meds here in the States). I'll let you know if I can figure out how to get my hands on the stuff and I'll have the Executor of my will contact you should it kill me.


NAOMI...I didn't forget you or your email. Although I think I read where Lori Schneider already reached the summit of Mt. Everest. My bad...I should have gotten off my necrotic butt and posted this information from your email sooner. I think ANYONE with MS who accomplishes walking out their front door everyday is a brave soul...let alone someone like Lori who makes it to her drive way and all the way up Mt. Everest!! Thanks for the link...



RAINI...not only do I LOVE the moniker (unless that really IS your name, then I ADORE it!), but think you rock! Yes, an attitude IS a terrible thing to waste and it does my heart good to know there is another *attitudinally challenged* individual hanging out on the blogosphere! Keep up the attitude and the mood...I also think back when the brain cells were creating more friction and rubbing together, I had noted YOU wrote a blog...which, OF COURSE, I cannot locate the link today. Too much space has accumulated between the brain cells I guess and there is no longer much activity firing away...sigh. If I AM correct about your blog, woodcha send me a link so I can include it? **Sulking away like a puppy just scolded for peeing on the floor**



DEAR SN IN INDIA...thank you so much for the friendly email and link to your magnificent art! I especially admire the painting of the woman holding the glass...is this a self-portrait? You and Bubbie (linked above) should talk...both are such gifted artists! I can draw stick figures, but even with that, I tend to not get the circle for the head shape drawn correctly! Stumble in any time here...you are ALWAYS welcome!



WEBSTER...In response to your comment on the previous post, yes...I AM feeling a bit better mentally, but the pain in my body persists. I think I am simply growing USED to the discomfort AND tired of hearing my sorry arse squeak about it. For the most part, I can tolerate the physical discomfort...it is the MENTAL/EMOTIONAL sequela that gets set in motion whenever I am *tolerating* the pain that is the most disturbing to me. I feel utterly distracted and as if I am peering through shattered glass at the world around me (metaphorically speaking...my vision is fine).

Things seem out of place and *fractured* as I struggle to make it from sun up to sun down without screaming out in discomfort or irritability. The long pause this past week in blogging has been the result of this accumulation of physical/emotional reaction. I HAVE discussed with my neuro the possibility of seeing a spine specialist...because I am certain this pain is due to the degeneration of my cervical spine and NOT primarily MS-related. So, as far as feeling better? I'm probably just tolerating feeling BAD in a BETTER way...sigh.



Dear WALK STARS: Sneaky, little BREAST CANCER GIRLS slipping over here to CHEESE under a new name and blog! You are soooo busted...pun intended. (LMAO at my superior wit...hehe) And in response to YOUR comment in which you believe the correct term is "A mouse in your pocket"...perhaps in Arizona (where the heat melts away all humor, unless you are MISS CHRIS, who always looks bootiful no matter what the temperature) that WOULD be the correct saying. But where I come from (white trailer trash city), we didn't HAVE mice...we had RATS...and *turds* were abundant, too. Often the kind on two legs. :-) Hence the saying in response to the incorrect use of the word *we*, "What, do you have a turd in your pocket?" **Dialing my dead mother up now on the Ouija Board to clarify this**.


SHAUNA...In response to your comment regarding my desire to drive the Oscar Meyer Wienermobile in my next career move (I believe the exact quoted comment was this: "I've been offered plenty of free wieners in my life. I politely decline."),I am only NOW able to type without falling out of my chair and laughing hysterically every time I think of your response. You Canadians are such a risque' group! Must be why I love you so...LOL



SHERRY/aka HAVE MYELIN?...I will forever be indebted to you for the borrowing and use of your word F-tard. And no, I have NOT gone all PC (politically correct) by not spelling out F-U-C-K...I'm just busy, and typing out the entire word takes too long. Plus, this would only give the JESUS CAMPERS more ammunition for comments. :-)



I think I'm done now...

Saturday, May 23, 2009

Lemming Stampede!...

For those of you who are familiar with Blogger (the host site of many blogs and the host site for CHEESE), you are probably already aware there are several ways to *follow* anyone's blog that happens to be written via Blogger hosting. You can simply click to a blog page directly (for CHEESE, that link is http://www.brain-cheese.blogspot.com/), you can subscribe to a blog's RSS feed, or if you are a Google Member/Blog on Blogger yourself, you can become a "FOLLOWER", which allows Blogger/Google to send you a notice every time someone you "FOLLOW" posts a new blog entry. And still, there is a way to "FOLLOW" certain blogs that link their social pages (MySpace, FaceBook, Bebo, etc.) directly to their postings from Blogger. Such are the complications of modern technology, which is supposedly designed to make our lives easier. Whew...



Whether out of threat of narcissistic injury, paranoia of being "watched", or true concern for others with Multiple Sclerosis (or a combination of all three!), I DO keep track of the many visitors that read CHEESE...mostly through a hidden statistics program running in the background of CHEESE (no, NOT the BraveNet stats you see over there to the left or the Feedjit stats...Moohahaha) that allows me to glimpse into your living rooms and see what's for dinner and what TV shows you are watching. OK, maybe not to THAT extent, because then I'd have to admit to you my name is Dick Cheney and I am a leftover from the Bush Administration. LOL But I CAN see when you arrive here, what you are reading here, and a host of other *vital* (said with tongue in cheek) statistics used to tailor BrainCheese to your liking (now I'm laughing out loud!). And, for the record, any and all posts on CHEESE that have anything to do with JESUS CAMP, STILL remain as the main *hit* on the counter...yes, JESUS CAMP trumps even Multiple Sclerosis here, which is a sad statistic to report. :-(




Along with observing your private colonoscopies via my stats program, I can (and HAVE once or twice) *block* someone from entering CHEESE...it's an extremely "other" rare program I use in response to some of the weirdness that comes from writing a public blog...occasionally there lurks a person who simply cannot abide by my ONE, cardinal rule for interaction on BrainCheese: PLAY NICE WITH EACH OTHER. I frankly do not care what criticisms you have of ME personally or any random, skanky things you might want to call me or comment about the CHEESE editor...you'll note, I WILL always publish those comments, because the comment IS most likely true! But on that rare occasion I have received skanky comment or email from someone who is "not playing nice" about OTHER CHEESE readers, I will first warn them *la dee dah* is not OK, then I'll attempt to counsel their sorry arse via email (if I can reach the culprit directly and if I FEEL like playing email therapist at the time), then I'll simply banish them from the Land O' CHEESE...like I said, it's been extremely rare, but I am NOT afraid to use my magic wand or vote someone off the island who cannot tolerate controversy or the opinions of others. I have my ways...which I will technologically discuss no further.




But back to the Lemming Stampede and title of this post...because I digress in writing as much as I REGRESS in real life.




You most likely have already noted the left-hand bar tab over there titled, "RUN LEMMINGS, RUN!"...this is where the mugshots/profile pictures accumulate of all those who DARE to publicly "FOLLOW" this blog via Blogger/Google...that number grows and shrinks on a regular basis as people come and go with interest in the blather painted across the CHEESE computer screen. There are also about 13 other "FOLLOWERS" from one of the social websites (which shall remain nameless to which I subscribe). In total, there's around 50 people who regularly come here to CHEESE who are NOT in search of more pictures of a 7 week old fetus or Jesus Camp (and you will note in the comment section of the previously highlighted post link, I publish ALL comments that come from what I personally consider some wackado peeps there, too...I don't discriminate, I just laugh quietly to myself)!




Outwardly, I am pleased there are so many people who may be finding interest, comfort, laughter, etc., in what I write on CHEESE. And, inwardly...I am HORRIFIED! I am often reminded of my first years of belonging to another *social website* (alrighty, there WERE no websites in the 80's!), called Alcoholics Anonymous, or AA for short. There were no personal computers back then, but the concept of AA was the same as a blog: Share your personal/deep dark secrets publicly to a group and receive feedback/support/community. Yes, my dear "FOLLOWERS"...it probably comes as no shock that the CHEESE used to knock back her fruits and vegetables (grains and grapes) via the distillation process, aka, alcohol...to the point of alarming distress. This was during the formative years of my personality development (or degeneration) in my early 20's. And I have not touched the grape or grain since July 20, 1987. That's right...I've been a dry drunk for 22 years.


Anywhozit, you may be familiar with AA yourself (or a friend of "Bill W.", as most alcoholics like to say in code) or you may know nothing about the group...either way, it doesn't matter because your personal (or lack thereof) connection to AA isn't my point. My POINT is still the notion of a Lemming Stampede and I WILL get to that soon...maybe.


So, one of the main premises of AA (or ANY of the *A* support groups, like NA, CA, ACA, etc.) is obviously to stop drinking, but to do so through a series of insightful paths (like first admitting that vodka is seriously damaging one's relationship with their *other* when the bottle is drained in one sitting, then thrown at the head of the *other*...not that this HAPPENED in the CHEESE life, of course...ahem). And part of that path is to tell one's story...to stand up in front of the chosen support group and spew all of the horrific details of the alcoholic life...and gain SUPPORT from the group.


As you might imagine, the CHEESE is no easy sell when it comes to *touchy feely* issues. True, I write a public blog now and I work in a branch of Social Services, but the honest-to-gawd-truth is, I really DON'T like people all that much. LOL Perhaps there is yet ANOTHER group beckoning me as I type that could assist me in my Antisocial ways...but I'm not interested. So, when it came my time to "share" in my AA support groups, I was often reluctant. It took nearly 3 years before I found any comfort in wearing my underwear on the outside of my clothing for all the world to see (NOT LITERALLY! A figure of speech meaning to air one's dirty laundry...geez). But, once I realized my smelly *sh!+* was no better or worse than anyone else, I started volunteering to lead AA meetings and became less embarrassed that I WAS an alcoholic...and the people around me were just like me.


It was sometime around my 3rd year of weekly (sometimes more) AA meetings that I was asked to be a guest speaker at a large AA group that typically had anywhere between 50 to 100 people crammed inside a small church basement. I have never shied away from public speaking...it's the Leo in me, who commands performance and the stage (hence, a public blog to continue the behavior of digging up my psyche for all the world to see)...so I was honored to be asked to flash my dirty laundry to this crowd. After all, I'd heard worse alcohol stories than my own.


What I had not prepared for was the overwhelming response from the crowd of newcomers in attendance at this particular meeting. Person after person/alcoholic after alcoholic came up to me after my *sharing*, telling me (among other things) how much strength they thought I must have, and how I'd obviously *overcome* my alcoholism, and how much they admired my *courage*.


This was the most distressing news I had ever been told in my three years of AA attendance...and I KNEW in my heart this was not true. I had simply PERFORMED for the crowd...telling them what I knew or thought they would want to hear. I was and had PRETENDED to be something I was not in my core...suiting up and showing up, but never really learning or incorporating the rules of the game. And, I never went back to another AA meeting after that.


Instead, I spent the next several years trying to learn what really motivated me, what propelled me through the dark waters, and what I really believed in. I also continued to refrain from the self-destructive act of drinking (which alcohol alone is not the problem, it is the alcoholic that is the problem), because I was USING alcohol as a means of expressing all the darkness that existed inside me...it was an EXCUSE for outwardly expressing what I felt on the inside: Small, insignificant, lonely, and weak. I do not celebrate an "AA birthday" as some do as a matter of personal choice, not because I don't support those that feel the date they stop drinking is significant. I don't celebrate an AA birthday for myself because there is no specific DATE in which I can claim any abstinence from the thoughts/behaviors that led me to misuse the substance in the first place...I STILL struggle to maintain balance in my life and I STILL struggle accepting my darkness...I just no longer consume alcohol in the process.


Whew...I'm getting closer to my point of the Lemming Stampede now...seriously. It's getting close. :-)


I have been writing this blog about my life with MS for 3 years...during this past three years, I have received multiple comments and emails from individuals seeking information, support, camaraderie, etc. I have also formed what I consider significant bonds with several of you via the Internet (even though I don't really like people all that much. hehe). So it is a somewhat precarious balancing act for me to feel *joy* there are as many of you who come here to read my blather as there are without also cautioning you to be ever-vigilant of accepting whatever you read here as FACT...it isn't FACT...it is only my opinion or my personal experience, my thoughts, my words, my ideas (however twisted they may be). I am an expert in NOTHING and a student of EVERYTHING. Today's information from my particular point of view could very well change tomorrow if a feather were to fly up my butt and tickle me in a new direction. It COULD happen!


There IS no right or wrong way when it comes to Multiple Sclerosis just like there is no right or wrong way when it comes to alcoholism...what IS important is that we find OUR way...whatever path that may be...and embrace OUR way. Our own, personal, individualized path of living, dealing with, treating, not treating, accepting, struggling with, MS.


I jokingly refer to that Blogger side bar of "FOLLOWERS" as lemmings...I do this because I hope it is always a reminder to NEVER run into the sea of MS because everyone else is...because the CHEESE has said something here on THIS blog, so it must be true for you as well. If you can relate to something said here, that is wonderful and hopefully useful to you. But I encourage you to ALWAYS follow your own path, even if it eventually does lead you to the cliff or into the sea...it is the only way to take responsibility for our own actions and our own, individual brand of Multiple Sclerosis...and at least if you end up running yourself over the cliff and into the sea, you can belt out the lyrics, "I did it my way", in style!


So "RUN, LEMMINGS, RUN!"...find your own path...and keep coming back here to BrainCheese if it remains useful for you. But if not, click away and SEARCH for that which brings you comfort or the information you seek. And don't bother looking back...unless you find yourself at the front of a lemming stampede and about to be trampled!...

Monday, May 18, 2009

Sunday, May 17, 2009

Can We Choose A Better Word Please?...

Peering through the haze of my fatigued eyes this evening, I mindlessly was staring at a DateLine Program on NBC...it featured many "social" issues (a 7 year old bilateral amputee for starters) in tear-jerking, dramatic flare (a program format of BrainCheese stylish envy, I must admit!), but when it came to the segment on Farrah Fawcett and her "WAR ON CANCER", I had to turn the channel in disgust.



Now, don't misinterpret my nose-turning response...I LOVE Farrah Fawcett and have since I was a Charlie's Angels wannbe kid! And I DO admire her perseverance in the face of diversity and I salute her deep conviction to change the world/educate the world through a documentary about her cancer experience ("Farrah's Story"). I wish her peace and no malice whatsoever.

But I have to admit, when I kept hearing about her WAR ON CANCER, I just had to change the channel, lest I throw a stinky shoe and bust my own TV screen in a fit of contempt. This is what happens when I'm sleep-deprived and a bit depraved...I become contemptuous and prone to senseless acts...or at least I like to embellish and believe I am CAPABLE of such. Ahem...




Anyway, my channel-changing-break-my-fingers-hitting-the remote-button action was somewhat visceral. It had to do with the constant use of the word WAR...well, that and the endless references to "battling" and "fighting" her illness. After nearly causing whiplash in my neck from my involuntary back and forth spasms of shaking my head "no", I just sucked it up and changed the channel...I don't need another pain in my neck to complain about after all...there are far to many figurative and literal ones there already. (You KNOW who are!)




I'm curious when and how "we" (and no, mother...I do NOT have a turd in my pocket, as she would often ask whenever "we" misused the word "we" as kids) began using the English language so carelessly and also how such words containing so much hostility in meaning became household references to boost our egos and sense of dominance?




Consulting (funny...I first misspelled that word as "consluting", which is probably more accurate) dear Webster's Reference Library, I looked up the definition of "war"...this is straight from the *word ho* bible (or dictionary, if you would prefer not to think of Webster, a collection of word meanings, and prostitution all in the same description):




War - n. 1. fighting between nations 2. state of hostility 3. conflict, contest.




Then I looked up the word "battle": n. 1. fight between armies, combat, (verb) 2. fight 3. struggle




And finally, I glanced at the word "fight": v. 1. contend (with) in battle or in single combat 2. maintain against an opponent 3. resolve by combat 4. quarrel, dispute, contest, (and FINALLY a more palatable definition) 5. Resist




As you can tell, all three of these words were originally adopted in the English language to provide description or service to an action of violence, hostility, or dispute. My personal opinion (and of course I DO have one) is, I just don't think we should be using these type of words in conjunction with discussions about DISEASE...I frankly think this type of notion just sets up our *diseases* to be mighty pissed off at us and to seek REVENGE!




Western medicine's philosophy is to obliterate that which challenges us in hopes of ending the challenge or preserving the body. We use antibiotics, cell-destroying chemotherapies, and surgical removal in hopes of obliterating that which afflicts us...often without regard or understanding WHY we have become diseased or afflicted in the FIRST place. It is an *out of sight, out of mind* philosophy...one, that we are now paying a sometimes costly price for. MUST I mention MRSA here (Methicillin-Resistant Staphylococcus Aureus)? The infection "WE" created from the overuse and misuse of antibiotics???




I am certainly NOT advocating a *lay down and die* approach toward disease management either...gawd knows I've PERSONALLY tried pretty much all of the Multiple Sclerosis drugs out there in hopes of finding that one drug that would either obliterate or slow down the demyelinating disease that is tapping on my last good nerve. But every time I have tried to "war" against, "conquer", "fight", or "battle" my MS, it ALWAYS seems to end up flanking me and kicking me squarely in the arse!




These days (and after month upon month of ending up bloodied on the battlefield), I am trying to take a more *coexisting* approach in my relationship with MS...it IS true...I don't always understand or appreciate the local customs and ways my MS has of doing things. And often times, we seem quite at odds in our dialogue with each other. But I am slowly coming to realize "WAR" against my MS is not the answer...anymore than WAR against a nation or group of people resolves a conflict.




To everything (and on a GOOD day!), I must believe there exists a purpose...a reason...a season or a place. I can choose to coexist with my neighbors or my disease process...OR, I can choose to be at WAR. And if I choose WAR, I must also be ready and willing to accept there will be no peace and many *casualties*...




So, blessings to you, Farrah, and your cancer...may you find more peace and less WAR with your disease process, leaving only comfort instead of casualties in spirit and mind...




Thursday, May 14, 2009

Why?...

Today was one of those days that I wished I would not have left the safety of the bunker I call my bed...but I did. I reported for work this morning, in pain, which only intensified throughout the day. I grimaced a lot...no one, but me seemed to mind...or perhaps they couldn't tell the difference from my "normal" scowling face? I felt little comfort in my usual routine and I found myself questioning why I do the type of work I do? It can be so thankless and, on days like today, so seemingly purposeless.

I've decided in my NEXT career, I want to drive this:That's right...The Oscar Mayer Wienermobile. Now there's a job with a purpose...and people are happy and thankful to see you because they KNOW they're gonna get a free wiener...

The Egyptians May Have Been On To Something...


...Had they only applied the *mummy wrap* on LIVE subjects, that is!

Yeah, I know this sounds hokie and perhaps even a bit out there...but, as is typical, I'm gonna say it anyway. Y'all are aware I've been enduring some fairly moderate to intense neuralgia in my right arm, yes? At first sign of pain in my forearm, I was suspicious a return of shingles was upon me because the pain felt like that particular skin-sensitive-my-arm's-on-fire pain that I have HAD in my right forearm just before an outbreak of shingles there.

Well, luckily (I guess?) no blisters have erupted on my forearm as of yet (and I no longer am suspicious of shingles), but the pain did travel up into the back of my right, flabby upper arm as well...this particular area of the pain has been giving me fits because it is difficult to AVOID touching anything (ah, like clothing?!?) to this area.

My never-seeming-to-tire-of-my-whining neuro ARNP (perhaps she should be known as Nurse NSTTOMW since I already have a Dr. SWWNBN?) suggested Neurontin or Lyrica yesterday for pain management (but I suspect this was REALLY a suggestion of desperation to shut me up!), and I DID try the Neurontin against my better judgment.

Also out of pure desperation (because I was needing to shut me up, too) I rooted around like a swine searching truffles in my old first aid drawer (ALL nurses have one of these...confiscated equipment, splints, wraps, bandages for those first aid needs), looking for an old elastic bandage I KNEW existed when I was treated for tennis elbow a few year's ago. And no, I've never played tennis in my life...leave it.

I located the moth infested device and decided to give it a try on my right elbow (gawd knows why...I was desperate)...slipping it on was the worst part that created the most pain (yes, I DID use that borrowed swear word, Have Myelin...the F-tard one!). After only a short amount of time though, I SWORE I was feeling some relief from the pain (or highly delusional from it at this point). I wore this darned thing around most of the afternoon and evening and, I have to say, my arm was feeling BETTER!

Now, I'm sure Nurse NSTTOMW and Dr. SWWNBN would most likely attribute my slight symptom relief to the Neurontin/Neurotten...after all, I suspect Dr. SWWNBN owns stock in the pharmaceutical company (but not my ARNP...I doubt Dr. SWWNBN PAYS her enough to purchase stock options...just my opinion of the medical biz and appropriation of funds/pay, but I digress). But, as is typical, the Neurontin/Morontin started giving me that strange head buzz after only two doses...so, as is also typical, I QUIT taking it!

I was a bit disappointed my elastic splint was so tiny and would only cover a portion of my upper forearm and elbow, because the area directly UNDER the elastic band DID feel better...this made me put on my thinking cap (which was now poorly fitting because of all the air space created in my brain from the Neurontin/Neurotten). Back to the first aid drawer I stumbled in search of a jumbo ace wrap I knew must exist in there...my search and rescue efforts paid off...I located a bran-spankin'-new one (I have NO idea how that got in there, since I don't think I've ever purchased an ace wrap in my life...ehem) and removed it from the packaging. I then proceeded to *wind up* my right arm (again using the F-tard word), from near wrist to the top of my flab, somewhat snugly. After the initial pain from the assault wore off, I waited.

And here is where the Egyptian mummy procedure comes in...I gotta tell ya...this darned ace wrap experimentation DOES seem to be helping considerably! And no, it's NOT the Neurontin/Morontin. I have no idea why or how, but it seems by adding snug external pressure to the affected area (most likely the flesh directly encasing my rotted or inflamed nerves), it is TRICKING my failing nervous system into submission!! I know, I know...hokie and all...but it IS working for me. I have no idea if this method of treatment would work for YOU...but if you are experiencing peripheral nerve pain in an extremity, it might be worth a try. Of course, if you are experiencing the *MS Hug*, I DON'T recommend binding up your abdomen...just wouldn't be pretty.

I'm just relieved to FIND some simple relief in at least one area of my aches and pains right now. I can't explain how or why this is helping, but it is...and I really DO suspect the external pressure is somehow tricking my nervous system, at least in my arm for the time being.

Or, maybe I have the ace bandage wound around my arm too tightly and it is cutting off vital blood flow to the nerves in my right arm? (Seriously, I don't, but that sounds shocking, which I tend to go for here)...whatever the case, I was almost considering getting out the chain saw and amputating the appendage myself anyway to relieve the pain (Ah, and THIS thought DID cross my mind, dramatic gesture and all)...

Wednesday, May 13, 2009

I'm Just Not Here Like I Used To Be...

In a mood...hard to explain. Perhaps it has been the constant pain in my arm, legs, and trunk casting shadows in my psyche today? Whatever the cause, I have had a rather melancholy earworm running through my brain much of the afternoon and evening...it's really a beautiful song by singer/song writer, Ann Reed, of Minnesota.

Somehow the lyrics feel quite true for MS and my life these days...I really AM not here like I used to be...give a listen:

(Written lyrics for you, Have Myelin)


USED TO BE
by Ann Reed

I'm really in it this time for the count
I'm feelin' beat into the ground
You say, "You're just not here like you used to be.
You're not here for me like you used to be."
You're right, you know, I'm just not around

If I can run fast enough I'll be free
The pain will only find me in my dreams
But I'm not as fleet of foot as I used to be
Don't believe I could be what I used to be
Giving 'til there's nothing left to me

Pain has a way of clearing through
What you don't need and what's of use
Losing what I thought was a part of me
Tears through the soul and the heart of me
No apologies, no excuse

I'll make it I know I'll be fine
Just a lingering sadness left inside
I'm just not here like I used to be
I'm no where near what I used to be
And that'll stay with me a while.

I'm not here like I used to be
I'm no where near what I used to be
And that'll stay that way a while

Monday, May 11, 2009

No, It's Not Like Stubbing A Toe...

Many months ago, I made reference to writing a "Pain Post"...I never got around to it. But now that I am experiencing significant pain once again in my body, it seems to be the topic resurfacing again in my mind. So, here you go...



Sometime during the first year's of my MS diagnosis, I had a strange and frustrating conversation with an acquaintance of mine (I'm pretty sure they don't read this blog and, based on past conversation, I'm not even certain they CAN read! You'll see what I mean...). I was experiencing nerve pain in my left leg that was creating a great deal of distress. In the course of the conversation, I attempted to explain in generalized adjectives and analogies what *nerve pain* felt like to this acquaintance. And, in response to my pain description, said acquaintance replied, "Oh, kind of like stubbing your toe". **THUD**




For those of you who HAVE experienced MS pain, I'm certain you can recognize just how discounting the *stubbed toe* remark felt...as a matter of fact, I also imagine you'd have had the same inner conflict I experienced in that fateful moment of conversation: Whether or not to allow this completely ignorant imbecile to live and breathe another day! And, for those of you with MS who have never had pain as one of your symptoms, I applaud you and I am envious...the gods have surely smiled upon you and shown you mercy...or, you lived a much cleaner past life than I did as Karma has a way of demonstrating. LOL




The origins of MS pain remain vast and quite often a complete mystery...sometimes the pain is due to muscle contractions, fatigued muscles, lesions directly located on the nerves (such as in optic neuritis - pain in the eyes), muscular compensation (when a muscle group over works itself because another muscle group is weak), medication side effects (no explanation needed), urinary tract infections (due to MS bladder dysfunction), trigeminal neuralgia (nerve pains in the face), the MS *Hug* (tight banding that can occur in the trunk for unknown reasons, but classic to MS), and a host of other *mystery* pains unexplained.




True "nerve pain" carries no specific adjective for description...it can present as dull, sharp, aching, piercing, agitating, burning, icy, intense, constant, tight, banding, contracting, etc. Speaking only for myself, sometimes my nerve pain feels like a glowing, red fire, burning or smoldering in my deep muscle tissues. Other times, it can feel like an icy, cold hand left stuck in a snow bank for 30 minutes, feeling as if the chill is radiating from my bones...it is ALWAYS constant and always present with varying degrees of intensity. On occasion, my "nerve pain" can feel like sharp scalpel blades being jabbed into my flesh...highly intense, but lasting only a few seconds or minutes...these pains generally catch me completely off guard and unexpectedly leave as seemingly disconnected to any reason as how they arrived. At other times, my nerve pain aches and pinches me...not intensely, but constantly...gnawing at my constitution and agitating my mood. And still at other moments, it can feel as if my skin is raw or on fire.




MS PAIN is soooo not like stubbing a toe...because when one stubs their toe (or at least from my PERSONAL experience of this), there is the initial sharp, intense pain of injury, usually followed by a period of throbbing. Toes heal...pain subsides eventually...and the mind knows this will occur EVERY time. With MS PAIN, there is no guarantee the discomfort will EVER end and sometimes it doesn't. The mind has no ability to predict or justify the pain, which often only serves to complicate the discomfort even further. I often feel highly agitated emotionally, which seems to coincide with my nerve pain...it's as if whatever is triggering the physical discomfort is also working in tandem with my emotional body...both feel quite out of my control and generated by causes of an unknown origin. This "emotional component" is often the most difficult to describe to the inexperienced. It is as if a switch gets thrown in my brain, sending out those same signals that occur spontaneously when one is over taken by laughter or tears during a movie...there's no REAL connection to the sadness/mental anxiety/laughter...it's just a movie after all...yet somehow the physical body responds as does the emotional body. I rarely can EVER explain why I FEEL emotionally the way I do with MS PAIN...it just is.




MS PAIN is not like stubbing a toe because it frequently sets up a vicious cycle, creating problems or discomfort in other areas of our lives. Sleep often becomes disturbed, anxiety takes over due to inner conflicts, the ability to cope is decreased, and these components tend to only INCREASE the pain, which intensifies the other issues...and on and on it goes...where/when it will stop, nobody knows (wasn't that some line from a children's song?!?) I put together a little, visual chart for all y'all which might better demonstrate the cyclic nature of MS PAIN:
Currently, I am experiencing fairly intense pain in my body...my legs ache in my bones, my right arm feels like the flesh is raw or on fire, and my waist and chest areas feel like I've got a tightly wound ace wrap applied. My mental/emotional body switched into high gear also after days of insomnia (superimposed by my work schedule), quite possibly setting up this pain cycle, and leading me down a dark path of fear and sadness. I don't FEEL well...physically or emotionally...but I have no idea which is the chicken or which is the egg, let alone WHO came upon me first! I only know I have no control over this current episode/possible relapse/moment/self-induced drama, and this causes me fear (see inner area of above chart for detailed explanation). I once again do not know WHEN or IF this current episode will end OR how much havoc it will stir in my life while it occurs...and the emotional conflict I feel in balancing my guilt over possibly consciously CAUSING this to occur (because of work/schedule issues that also *seem* out of my control, but possibly more driven by bullheadedness and pride) and ACCEPTING I have no control over the course, now FEELS overwhelming.




Neurontin or Lyrica...these are the suggestions for pain management made by my *never-seeming-to-tire-from-my-constant-whining* neurology ARNP...neither choice is appealing. Lyrica makes my head spin like a top and Neurontin (otherwise known as *neurotten* in my circle of MS friends!) causes me to feel like air is blowing through one ear, passing through my mind, and out the other ear (could have probably just said "like an airhead"). These choices anger me...because this is the best "we've" got...I've tried everything from narcotics to seizure medications in the past and there is little that even takes the edge off this type of MS PAIN. Pacing seems to be the only physical, short term remedy for the pain in my legs, but one can only walk so far and in so many circles...AND, being upright for long blocks of time causes my CHEST AND WAIST to feel tighter~! Pacing also seems to only agitate my insomnia (hard to really sleep when walking, unless of course you're a sleepwalker...argh, argh)...vicious cycle.




So, in closing (betcha thought I'd NEVER get here!), NO, MS PAIN IS NOT LIKE STUBBING A TOE...But I'm considering attempting to stub my toe to get my mind off my MS PAIN for awhile!!! I'll let you know how that plan works out for me... :-)

Sunday, May 10, 2009

Out To Lunch...

If you clicked over here on CHEESE hoping to mine a few nuggets of wisdom, levity, or sensibility, change channels now...you'll find none of the three in this post. The CHEESE is not *happy* and, therefore you my preciouses, must suffer.

I've been cursing a lot of things today, but my biggest offense (the struck down by lightening kind) has been to curse whatever great Power is out there that thought sending me a care package of Multiple Sclerosis would somehow be funny...or, worse yet, a "growth" experience. Yes, God, Jehovah, Ali, Buddha, Moses, Baby Jesus...whatever your name is...I'm talking to YOU! And I'm letting You know now...I'm putting You on notice. I'm not happy with your *package* or your grand plan and I'd like to file a complaint...maybe even a union grievance. As a matter of fact, I'm considering just leaving this mess here and taking a break...going out to lunch...I'll set my return time on the clock to WHENEVER so You'll know when to expect me back in this ethereal office You call Life.


I'm seriously in a full blown *I CAN'T TAKE THIS ANYMORE* mood. I'm pissed off...and there's nothing worse than a pissed off CHEESE (well, I suppose a pissed ON CHEESE would be worse perhaps). I tend to mumble under my breath and make up new designer swear words as I go when I'm feeling this way. I froth at the (potty) mouth like a rabid dog and small animals run for cover in fear of being eaten.


I'm seriously pissed off that I once again feel like hammered sh!+...my body hurts in ways I never dreamed imaginable. My skin on my right arm feels like if one were to touch it, the flesh would emit a poison...it hurts/burns...what's up with THAT?!? And my legs ache in my bones, as if my marrow has somehow been set on fire. The imaginative tourniquet around my chest and hips is quite possibly cutting off all blood flow to my brain right now, causing me to think unholy thoughts in my oxygen-starved grey matter. And I'm quite certain the figurative cold, steel rods in my neck would set off a metal detector at an airport.


Oh sure, I'm being dramatic here...you betcha, O' Great One (if that really IS your name?!?)...but you're pissing me off with this stuff. And I'm quite sick of people mouthing that saying, "God (Jehovah, Ali, Buddha, Moses, Baby Jesus) only gives us what we can handle" crap. That MAY be true, but why do we have to have ANYTHING like this to handle? Who's great idea was/is THAT?!? And if this is some grand practical joke, I'm through laughing. Not even smiling.


So, be forewarned...I'm going to take my lunch break...and when I return, this entire mess better be cleaned up!...

Saturday, May 09, 2009

Green Around The Gills...

Night shifts are over and I feel sick...that kind of sick feeling that comes from lack of sleep...pit of the stomach, head dizzying, nauseating, lethargic sick. And what's more, I have a strong suspicion I am once again developing an outbreak of shingles on my right arm (been there, done that...have the scars to prove it). I've got that burning, can't-stand-anything-touching-my-skin feeling that I've had before just prior to an outbreak of shingles.

I'm hoping a day of sleeping will cure what ails me...if not, I'm hoping for a painless death in my sleep. Best close up the shutters on the hut and bar the door...I'm not fit for human consumption right now. I don't think this is what the commercials are talking about when they encourage us to "go green"...

Tuesday, May 05, 2009

Into The Mine...

It's been a bit quiet over here in BRAINCHEESEVILLE...ever since the Swine Flu/H1N1 became basically a non-news, downplayed item, I've had little to say (but didn't I TELL you this would happen?!? The flu thangy, not my muteness!).

I've also been spending a greater amount of time awake during the NIGHT than during daylight hours in an effort to try to convert my sleep patterns to something ungodly and unholy...that's right...I'm heading into the NIGHT SHIFT MINE tonight at 11:00PM. But, not just for ONE, gruesome night of torturous fun and folly...nope. FOUR.


That's right. You read that last line correctly. I drew the short straw (figures, since I ride the "short" bus, after all) this rotation in my work schedule and I am now expected to do hard time in the mine (I don't actually work in a mine shaft, but I think you can make the jump in the analogy!). I'm only hoping the MS stays in check AFTER this adventure.


Why yes, I DID just recover from a case of probable piglet flu...thank you for asking. But this does NOT preclude me from *doing my time* at work. Random night shifts fall under the category of "Other Duties As Assigned"...and I was put on notice last week that "Other Duties" would become part of my "Assignment" this week.


I struggle a lot with things like this...when to play the MS card and when to keep my poker face on and hang onto the card...for the sake of winning a much bigger pot later. I could probably quite easily get the infamous *note* from my doctor, alerting the world and all it's leaders, I have Multiple Sclerosis and should NOT be made to alter my schedule/lifestyle/sleep patterns so drastically (aka, request formal accommodation)...that doing so can set up the perfect planetary alignments and weather patterns for a raging MS storm...that I'm somehow genetically *special*, unlike my other colleagues, and I risk the possibility of debilitating illness should I be made to do what THEY do (which is quite often for them to alter work hours, unfortunately). Yeah, I suppose I could play that card whenever...but I'm still holding out.


It can be such a precarious balance, making a place for MS in our lives. It is such an annoying and unforgiving part of an MSers existence to ALWAYS be planning ahead for disaster or even basic energy resources to get us through our daily lives. We make an adjustment here, cut something out there, rest when we can, do less when we can, drag a leg with us to this, silently experience pain with that...it becomes such a part of our lives, this thing called Multiple Sclerosis, that I sometimes FORGET just how much it can (and does) impact and affect my daily routine. THIS routine has become my *norm* and I have forgotten my routine when I did NOT have to take into account the effects of MS on my body, mind, and soul.


I'm also very aware that sometimes I want to USE the MS as an excuse for NOT doing something I just don't want to do...it becomes a battle of ego versus super ego as I try to sort out what the motivation is behind my wanting to *cop* out. Is it REALLY because I can't/shouldn't do something or is it because I don't WANT to? Will the activity truly deplete me/set up an MS relapse/make me ill or am I using that possibility as an excuse not to move forward for other reasons? I become both psychological patient and therapist sometimes as I try to objectively sort out my often hidden motivations...and, most of the time, neither decision is completely off base...to *do* or not to *do*.


My work tends to be an area of my life that I DO push myself...sometimes well beyond the point of exhaustion. But I have my reasons. First of all, I truly do ENJOY my work and it brings satisfaction in my life...a primary motivator. Second, my work pays for my extravagant lifestyle (**cough, choke**) and my GOLD CARD insurance premiums as well as other nifty benefits...things that are a MUST have these days. This second motivator also adds to my *life satisfaction* greatly and feeds my intense need to remain independent...without this, I fear shriveling up in a ball and dying a painful, physical and emotional death (yes...sigh...it's dramatic). And third, my work provides a wonderful social network of colleagues who I also call FRIENDS...a support system, a net, and a basket...that keeps me always laughing, always thinking, and never lonely...they are as much family to me as my own distant bloodline...and I kind of LIKE them better than family, too. LOL


So, I'm going in just a few hours to begin the night death march (no offense to those who really DID do death marches in the camps during WWII...I'm just being my dramatic self!)...four 9 1/2 hour shifts that won't be over until Saturday morning around 9:00AM. More than likely, I won't be resurfacing out of this mine until sometime early next week...so, if you don't hear from me, it is because I am in the dark with my comrades for the next 4 nights. I sure do hope that MS canary can still sing when this is over.


Wish me luck...I'm going in...