Tuesday, March 31, 2009

Please Ignore The Man Behind The Curtain...In The Land Of OZ, Facts Are Not Important...

I didn't see it...but I've read and heard about. The interview is *all the buzz* on the Multiple Sclerosis wave/Short Bus!

I'm talking about the March 17th Oprah Winfrey Show (Big "O", as I fondly refer to her) where she interviewed Montel Williams and Dr. Oz. Now, before anyone sighs a big yawn and says, "For the love of gawd, I'm sick of reading/hearing about this!" (because I know I'D be doing that right about now), please understand I am neither writing about Big "O"'s ignorance of MS NOR Montel's interview. I accept Big "O" for what she is (a mega star/billionaire, richer than me) and I have nothing bad to say about Montel (dude with MS trying to become richer writing books). I am solely here to betch slap The Wizard of OZ, AKA, Dr. Mehmet Oz into tomorrow. And, contrary to his statements during the above mentioned show, I plan to back mine with researched fact and my own personal voodoo twist stemming from 23 years of psychiatric experience...ahem. So let me begin and let's get this over with.

Yes, I AM going to talk about Multiple Sclerosis and SUICIDE. After all, I DO know a bit about both topics. So let me preface this post with the following statement:


Yes, I said it. Sue me. No jury would convict because I've got statistics on my side. But, for the legal record, let me quote his EXACT statement during the interview:

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide. "Folks just cannot take it," Dr. Oz says. "It just eats away at you from the inside." Direct from the Big "O's" website so there's no mincing of words here.

Good grief...where do I begin? WAIT! I have a profound idea!!! How about I begin with research and statistics?!?

Well...golly, Miss Molly. There's just not been a whole lot of research done when it comes to MS and suicide. "Why?" you ask, with puzzling look upon your face. That's because most mental health/suicide statistics focus primarily on MENTAL DISORDERS and suicide/lethality post mortem assessments. There is no standardized national or international data base that tracks suicide rates in relation to one particular physical disease or another (death, yes...suicide, no). And most funding for these expensive and long-term studies is awarded toward the monitoring of MENTAL ILLNESS as a premorbid factor in suicide...because let's face it...you'd HAVE to be mentally ill to kill yourself, right?!? Again...ahem. Tell THAT to any doctor assisted suicide voter in Oregon or Washington states.

The few research studies that HAVE been done date back to 1985, 1993, and 2003...and two of these three studies were conducted in Sweden and South Wales...small countries in funding and size compared to the USA, who continues to statically boast a most likely OUTDATED statistical count of people diagnosed with MS within it's borders - 400,000. That's been the MS head count for well over 10 years...but, I'm not going to tackle THAT figure here either, even though I disagree with the numbers (based upon current diagnostic availability, improved treatment modalities supporting longer life spans, etc., as compared to 10 years ago).

In 1985, a study was conducted in South Wales among 441 death certificates collected for more than 20 years of MS patients. This study found the median observed survival time for these MSers from symptom onset to death was 38.0 years (let's see...I was diagnosed at age 38 + 38.0, means I could live to be 74?!?...dear Lord, somebody call Dr. Kevorkian! I don't think I WANT to hang out until 74. LOL)...men and women in this study lived to a mean age of 65, with only a negligible 1/10th of a difference noted for women living with MS slightly longer. In 57.9% of those studied post mortem (dead), cause of death was related to MS...42.1% had cause of death unrelated to MS (and 27% of these patients didn't even HAVE MS on their death certificate,even though they HAD MS!). The most common cause of death was respiratory disease - 47.5%. **Journal of Neurology, Neurosurgery, and Psychiatry 2008;79:1016-1021**

What the 1985 study concluded was, MS patients were almost 3X's more likely to die prematurely relative to the general population...but NOT from SUICIDE. (Give The Oz one point for identifying loosely "respiratory disease" as a common cause of death in MS - but NOT necessarily SUFFOCATION!) So, back to SUICIDE and MS...

In 1993, the National Center for the Study and Prevention of Suicide got a tiny little grant to study a sample of 24 MS "subjects" who had completed suicide (this is in the USA, peeps). They compared 22 MS "subjects" who had made nonfatal suicide attempts along with 22 non-suicidal MS "subjects"...math says (or calculator) this was a total of 68 MS "subjects" - 24 who were deceased with cause of death deemed suicide. Not a HUGE collection of "subjects" if you ask me...but they didn't, so I'll go on.

The results of the above study indicated that suicide completers were more likely to be male (and BTW, males routinely choose far more lethal means of suicide, such as hanging, fire arm, or jumping, while women OD, slit wrists, etc...this is from my OWN practical 23 year experience and, based upon my belief women routinely don't like to leave a mess...seriously.), unemployed, experiencing financial stress, and who USED A GUN TO COMMIT SUICIDE (see? Told ya so). This study goes on to say MS suicide completers were also more severely disabled, in a late stage/phase of MS, and who displayed signs of unendurable psychic pain. **Neurorehabilitiation and Neural Repair, Vol. 7, No. 2, 53-62 (1993)**

And now, on to where most of the websites get their wide range of quoted statistics when referring to the elevated suicide risk among MS patients...you may have noted (but I doubt it...few people want to READ about MS and suicide!) on many websites, there is a discrepancy in figures regarding just how "at risk" MSers are to commit suicide...usually ranging from between 2X to 15X more likely to die from self-inflicted injury, AKA, suicide.

In 2003, **Fredrikson, S., Cheng, Q, Jiang GX and Wasserman D (2003), Neuroepidemiology 22:146-52.** did a little study in Sweden. They felt that results of previous studies of suicide risk among MS patients were inconsistent (duh!)...so they did their OWN. During the years 1969 and 1996, they looked at hospital patients (some 77,377 admissions and 12,834, where MS was recorded as a primary or secondary diagnosis at time of discharge)...and they followed these cases for approximately 10 years (9.9 mean, to be exact). They then linked these cases to the Swedish Cause of Death Register and found 5,052 had died during the course of this study...90, of which, were deemed to have died from suicide (1.8% suicide rate)...of that 90, most committed suicide within 5.8 years from the time of discharge from the hospital (it is not clear WHEN they were diagnosed with MS specifically in the study).

These investigators calculated the risk factor for suicide as a cause of death in THIS particular study was 2.3 times greater than the general population...in both male and females (although males once again demonstrated a significantly higher rate than females). Of important note is, "suicide risk was particularly higher in the first year after initial diagnosis of Multiple Sclerosis and this occurred most frequently among YOUNG MALE MSers". The mean age of successful suicide among the 90 dead was 44.5 years old (whew! I passed that, but I'm STILL eyeing that "74" age lifespan up there with a *fish eye*)...55% of all these 90 suicides were committed in the first 5 years after the first admission to the hospital with an MS diagnosis. So, yes...we're all keenly aware (those of with MS, that is), that first year of diagnosis is a BETCH...and the next five aren't so sweet either!

So...here's my bone of contention with you, Dr. Oz. You are misquoting scientifically studied DATA and proven fact. Yes, it IS true those diagnosed with MS have a higher incident of committing suicide than Joe Blow Healthy off the street. But suicide is NOT found to be a number one or two or even three cause of death among MSers! Yeah, we "just can't take it" as you are quoted to say...but still we DO...every day until we die, the majority of us...and NOT because of suffocation as you were so inaccurately quoted to say. We die from the same cancers, heart disease, strokes, ebola, cat scratch fever, and CRAP everybody else croaks from.

Yes, it IS true we have a higher risk of contracting "other" diseases because of our immune systems (often compromised by medications, etc.) and our sometimes decreased mobility (which makes us more susceptible to pneumonia's, blood clots, etc...because we just aren't moving around as much sometimes, in comparison to Joe Blow Healthy). But MS is (most often speaking here) NOT THE PRIMARY CAUSE OF OUR DEATHS...it is a secondary FACTOR/DISEASE CONTRIBUTING to the cause of our deaths. Even the all-knowing-all-seeing-corner-of-MS-Society...THE NATIONAL MS SOCIETY...has issued a statement (far nicer than mine), saying your blatant misinformation sucks...check it out here...and I don't usually quote ANYTHING they say because of religious philosophical differences...they think they're God and I don't. LOL

So, in conclusion, I'm rather fortunate I DIDN'T see Montel crying or the Big "O" actually saying she didn't know much about MS or Dr. OZ pulling such crap statements out of his arse no one even needed to smell his fingers to know where his statistics came from! I might have become HOMICIDAL...and there just AREN'T any statistics about Multiple Sclerosis and homicide...but, I might have started a trend...LOL...

Saturday, March 28, 2009

Lost And Found...

If anyone finds my memory lying around unattended, please send it back to me and I'll pay the postage. I seem to have misplaced it somewhere...along with a set of keys, what day of the week it is, my shoes, a file folder, a bank statement, and few other items needing to be retrieved...

Seriously. Give it back...

Friday, March 27, 2009

In Praise Of "THE BUBBIE"...

During my most recent medical incident/drama, I received several lovely cards, phone calls, emails, visits, etc. I am always moved by the generosity and kindness others bestow upon me as, most of the time, I do not feel worthy of such acts of giving...especially when I am purposefully trying to AVOID others, not shower for days, and hide out sulking in my own misery!

There was one such package that arrived at my post office mailbox which caused me great pause...it was from THE BUBBIE. If you are not familiar with *THE BUBBIE* (as I like to fondly call her...I think the use of the "The" before her moniker signifies profound importance!), I suggest you click over to her blog, "Bubbie's Blog", to find out more...she writes a down to earth blog about her experiences with MS and the world. Although not a prolific poster, what she DOES post up can instill tears of laughter or understanding.

Anywhozit...the package. I opened this package from FlO-REE-DA and discovered an assortment of THE BUBBIE'S most recent paintings placed on cards:

And I have been privately fingering these cards in awe ever since. I don't want to share them with anyone, even though that's what THE BUBBIE says they are meant for: Snail Mail. I like to take them out and look at them, pretty much whenever I pass them on my coffee table, and just feel the comfort.

There is a story behind these beautiful cards and one I will not go into great detail about here...because it is THE BUBBIE'S story and not mine to tell. But what I WILL say is this...I am in absolute stillness and awe when I sit and stare at these cards because they represent to me a journey, filled with discovery, pain, and joy.

You see, THE BUBBIE is an artist...and a remarkably talented one at that. A talent bestowed upon only a few rare people in this world and a gift many of us will never possess (especially me!). AND...THE BUBBIE has Multiple Sclerosis (and quite possibly an assortment of other medical issues). What I must go on to acknowledge is, THE BUBBIE struggles and wrangles this crappy disease called MS on a daily basis...and MS tried to suffocate her rare talent by effing up her eyesight as well as her hands. For a long while, it caused her to stop painting.

Then, one day THE BUBBIE spit in the face of MS and picked up her brushes again...this was around the time I first met her and why I have such a connection to her recent work. She started working in water colors, a new medium, and...she began to paint again...creating magnificent works in colors that speak to the very heart of anyone wrestling with MS. She began creating paintings with colors she couldn't necessarily discern any longer...only using intuition to guide her...to produce the poorly captured examples in the photo up there (they are MUCH better in person!).

I fell in love with this one, called Mystic Birch:

And promptly ordered a large copy from her Zazzle Page for future framing.

Please understand something here...I am NOT promoting THE BUBBIE for any kind of sales purposes. In fact, she doesn't even know I am writing this post. The point I am trying to make here is still about Multiple Sclerosis...and the fact even THIS wretched disease cannot dampen the human spirit. Certainly MS can and will change all of our lives (and those who care about us as well), but we cannot allow it to master our destiny...we cannot allow MS to destroy our talents and the things that bring us joy.

In THE BUBBIE'S paintings, I clearly SEE the *Face Of MS* (more than I do in the MS Society's webpage...ehem)...because I know the story of fear and determination and uncertainty that is behind every stroke of her brush. And I can relate to that story (not the talent)...which gives me great comfort as I march forward in the muck and mire of my own MS.

Now excuse me while I return to my almost-voyeuristic-gazing of my BUBBIES...somehow calling my collection "My Bubbies" DOES sound a bit perverse...which is what one would expect here on CHEESE...LOL...

Wednesday, March 25, 2009

To All You Freaks And Weirdo's...

I received a disturbing email this morning from a CHEESE reader, informing me there was some kind of bizarre coup circling around the INNERDNETS about me...OK, maybe not a *coup d'etat* because that would imply some level of importance! More like strange and bold lies by a person or persons (no identities were provided, lest I would NOT have to address this publicly on a blog and could simply contact the culprits directly!) regarding who and what they "think" I am.

First, let me preface this post with my belief: "The Internet is an unusually bizarre and complicated social network system."

There. I said it. And I fully believe it. The Internet and modern technology has replaced the most simple of human connections...direct contact...being able to look into the eyes of another...to touch their hand, see their facial expressions, and hear the intonations of their words. There is a VAST communication void that has been established on the Internet in our age of blogging, email, and *Instant Messaging*...it may be *instant* to type to places across the globe, but we lose some of the basic fundamentals of connecting with another. This is why our court system here in the States continues to allow face to face contact with one's accuser and with a jury of our peers! When THAT fundamental is lost in our courts, I think we might as well ALL pack our bags for prison...

So, back to addressing *freaks and weirdo's*...

The CHEESE reader who emailed me was concerned that someone (who I will refer to as *freaks and weirdo's*, since I don't KNOW who they are or if there is more than one!) had informed them I was presenting a false identity on one of the Social Network Pages (which shall remain nameless to protect the identity of my "informant"...really getting into deep cyber espionage here! LOL) and I was "calling for" people with MS to join me in something, which is not clear what that "something" is/was. WOOT?

OK...I'm only going to say this once to the *freaks and weirdo's* in question:


What you see is what you get here on CHEESE (and any OTHER website/social page/in person contact)...do I SHARE my full, real name with you here? NO. Because I am keenly aware there are already too many *FREAKS AND WEIRDO'S* out there in the world who have way too much time on their hands to GOOGLE me (but it still fascinates me you would even care)! Just accept it...unless suffering from a rare form of dementia and inhibition issues causing unknowing self-disclosure, you will NEVER be privy to my full name, address, date of birth, social security number, etc., or any other direct, identifying information...because I enjoy what few ounces of privacy still exist in my life and my government. So, since you (*freaks and weirdo's*) seem to think I am using a FALSE identity on another drab social page, I'm curious who/what you think my REAL/CURRENT identity IS...since you don't actually KNOW it after all? Unless, of course, you are a direct contact friend who reads CHEESE (and I emphasize the word *friend* there), who wouldn't bother emailing an Internet friend of mine with blatant lies anyway...seriously, what's WRONG with you?

Ooo! Ooo! Let me address that last question I pose...because I think it's important and, since I DO work in psychiatry (no, you don't exactly KNOW my educational background, direct employer, or the functions of my job...I've never disclosed those minute details of my life to you!), I feel qualified to address that question directly.

What I am extrapolating (in my humble, yet educated opinion) from this information about you (*freaks and weirdo's*) is this:
You have many fears. You are most likely a person or persons who try to project themselves into the world as sophisticated, well-grounded, secure, and knowing, but this is a facade...deep inside, you feel inadequate in many areas of your life, thus resorting to attempts at casting doubt on others via malicious gossip (why yes, in fact I DO know a bit about behavioral profiling!). Given the fact you presumably have MS yourself (otherwise I can assume you would NEVER have read this poorly written and blathering blog), most likely sets you up to feel vulnerable, both physically and mental. You therefore, attempt to compensate for this vulnerability via unhealthy means to ease your own fears. Why do I think THAT? Because only a fearful person responds in this manner...whether it is fear of not being good enough, not being important, not being the center of attention, etc. THESE are the reasons someone...anyone...even *freaks and weirdo's*...participate in malicious gossip. It is an attempt to decrease their OWN fear(s) by casting doubt or dismantling another, thereby temporarily feeling a sense of importance or dominance.

I am highly intrigued ANYONE would choose such a low life as myself to stir malicious gossip around! Frankly, this only serves to inflate my already enormous ego. LOL The fact anyone (*freaks and weirdo's*) feels a need to dismantle or cast doubt about me in ANY way, whether in person or on the Internet, causes raucous laughter to erupt in my belly. None of us in this life are really THAT important...BRAINCHEESE included. And the notion I would be "calling for" people with MS to join me in ANYTHING (I'm still curious what this "anything" might be? World domination?!?) makes me laugh until I want to wet my pants!!! This is a blog on the Internet...I write about MS, my life WITH the disease, and an assortment of my own opinions/experiences...

If you are familiar with the psychological term, "triangulation", you will fully understand WHY I find your behaviors so dysfunctional, dear *freaks and weirdo's*. My email address is right there on the left-hand side of this blog...if you have questions/comments/concerns about me (and really WANT answers rather than a simple desire to make yourself feel better temporarily via malicious gossip), the door is open right there to email me directly. No, I won't disclose intimate details to you about my life or identity...but it's still OK to HAVE THE BRASS GONADS TO ASK ME DIRECTLY...and leave my friends and other contacts out of your silly mind play. Anyone who has ever emailed me knows I WILL always respond...eventually...and hopefully with enough integrity and insight to leave you feeling comfortable to email me again if you choose to. So please, have the maturity to pose your questions directly rather than triangulating dysfunctionally between an unsuspecting friend and I. It's the *right* thing to do...and since blogging an entire post about YOU is the only way I have to reach out and TOUCH you, I hope you (*freaks and weirdo's*) will heed my advice so we may all lay this issue to rest.

Whatever the alleged "issue" was in the first place! I'm STILL trying to figure THAT one out...

Saturday, March 21, 2009

GooooooO NADS!

March Madness here in the States (otherwise known as college basketball finals season) just brings out strange images in me...it makes me want to cheer and root for all KINDS of things. Especially my gonads!

Now, thanks to Jen over at MS Strength , I will forever have a permanent scarring in my brain about my recent ultrasound of my ALARMINGLY LARGE, PROBABLE OVARIAN CYSTS. Yes, it is she who sent me the email referencing her experience administering transvaginal ultrasounds as being akin to conducting a symphony! When my sweet and young ultrasound technician was "conducting" MY TV ultrasound today (OK, do you really want to know this fellas? A transvaginal ultrasound requires a wand to be placed in the *va-jay jay* and moved back and forth like a conductor to get pictures of the female anatomy. TMI?), I DID think of you Jen...and I laughed out loud as though appearing to respond to internal stimuli (psych reference)...nearly scared the innocence right out of that poor technician.

So, yes. I DID finally get my ultrasound of the "nads" today. I am pleased to report my left "nad" seemed to have complied with my wishes and sulked it's way back down to normal size. My right nad/ovary however, remains a rebellious renegade...weighing in at 2x the size of my internal oven (uterus). It seems R-Nad did not get the message and continues to bulge heartily against my innards.

The good news, as I am told is, R-Nad appears to be containing two, large (alarmingly in some opinion) cysts of fluid, not tumorous tissue currently...which, to interpret means simply my right ovary does not appear to be cancerous at this time. Whew...Goooo NAD! The current plan of action/inaction is to wait a month, conduct the symphony again, and see if there is any change in the size of this ALARMINGLY LARGE, PROBABLE OVARIAN CYST(s). My ARNP wants me to try a low dose hormone pill (basically a birth control pill) to see if that might assist in cyst shrinkage...something I find Hi Larry Usly funny at my age of unchild-bearing years.

The bad news, and there always IS some, is...there is concern R-Nad might contort itself into unholy positions, thereby cutting off blood supply to my already questionably functioning right ovary...or R-Nad could burst or leak, which would create pain of epic proportions. I am told when ovaries contain cysts this large, this is not an uncommon thing to have happen...and, if it DOES, I will have to make a trip to the ER with probable surgery waiting in the wings...THIS news of possibilities did NOT make happy. But still, I would not let the news bum my voyage or steal my joy.

I don't have ovarian cancer. THIS is most excellent news...and certainly worthy of a few cheers! Let the games begin.

GoooooooO NADS!!!!...
Editor's Note: Thank you to all of you who have emailed or commented, sending such thoughtful wishes for a positive outcome! Your thoughts (and yes, Kelley...even PRAYERS!) have brought a smile to my face and wonderful healing...I've been a bit preoccupied surviving, but these kind deeds have NOT gone unnoticed. :-)

Tuesday, March 17, 2009

The Alarmingly Large Gonads...

...will be checked via ultrasound on Friday.

I repeat: The Alarmingly Large Gonads will be checked via ultrasound on Friday.

I don't know...that word "gonad" just sounds more removed from my personal space than "ovarian cysts". Sort of like "gonad" could be my neighbor next door...I know he/she is there, but that's about all...it's nothing personal, just my neighbor.

I finally reached my ARNP today who, not unlike me, voiced concern I was not given an ultrasound while in that *wrong hospital* I was admitted to this weekend by Doogette Howser, MD! She also assured me I was NOT over-reacting with histrionic alarm, given my recent bout of strange symptoms. She's a little concerned about my pain level and waiting until Friday to complete the test, but I assured her I would seek immediate treatment if anything changed dramatically in the next 72 hours.

I return to work in the morning...wish me luck. I DO hope no one comments about my ovaries/gonads making my butt look too big...

Monday, March 16, 2009

Fearful Of Needing...

I've been throwing myself against these four walls enough...it is time to rest. And I'm not talking about four walls in a room or in my home...I'm talking about the four walls in my mind.

Today is the first day I have felt somewhat *back* in my life and able to form complete sentences. I have been away too long, nearly forgetting what it is like to be present. Whether MS-induced, steroid-induced, or *other*-induced, I have been absent from my life for what feels like an eternal, three weeks.

It's not that I particularly FEEL better physically, although there seems to be some areas of physical improvement happening...like only having diarrhea once today (funny, someone commented to me that I knew how to spell d*i*a*r*r*h*e*a and I thought this odd LOL) and literally feeling like I can once again SPEAK in complete sentences without having the sensation my mind is cutting out. The dizziness feels more tolerable today and the nausea is down to a low roar in my belly...signs of life returning to an otherwise chaotic digestive system. The pain in my back and abdomen continues, but a switch to narcotic analgesics seems to be keeping this to only an annoying level. Even the weakness in my left leg/side feels less *tingle-y*...if that is even an accurate description of this sensation...and my jumping calf and face muscles feel a bit less excited.

OR, I am imagining all of the above...just like I have been trying to convince myself I have imagined ALL of these symptoms in the first place.

I had a long talk today with one of my wise mentors after breaking down on the phone in sniffling tears, telling her I was concerned I had lost touch with reality (because nothing could be found medically to explain)...that NONE of the past three weeks of symptoms were, in fact, real...and I feared I had imagined them ALL somehow in my head. This is often a theme I resort to when Multiple Sclerosis splatters me with it's peculiar form of crap hitting the fan...the disease cannot be real because it can't be seen.

She carefully reassured me I could NOT have *imagined* my way into observable diarrhea (there's that spelling again!), or low potassium levels, or bruises to my forehead from falling, or...even though I adamantly argued contrary to this about a list of recent symptoms as long as my arm. And...

She gave me permission to be ill...to be *sick*...to not feel well...and to do whatever I needed to do to take care of myself...to cry...to push back against the medical establishment AND the disease...to be angry...to grieve...to let myself get better...and to NEED others to help see me through this time.

It's strange to admit this but, not long after I was given permission to be *sick* this morning, I started to feel a bit better. The mind (and body) DO work in mysterious ways...

So many times when I experience my "maybe MS/maybe not MS" symptoms, I immediately cycle into a state of denial. It's as if I am not ALLOWED to experience this disease (or any other, for that matter) because, to do so, would show some sign of weakness. And, to show weakness would indicate I am vulnerable. And, to be vulnerable would mean I might NEED something outside of what I am able to provide for myself. And, the final blow of this cycle is:


My fear of "needing" from others could be psychoanalyzed to death. But suffice it to say in general terms (for most of us), that fear often stems from NOT having our needs met at some point in our early lives. To have been deprived of something - whether basic needs of food/water/shelter/clothing or the more developmental needs of love/security/acceptance/understanding - sets up a cycle of anticipated fear we *might* experience that deprivation again. Therefore, we (as human beings) will do whatever we must do to avoid that potential or actual deprivation later in our lives. It's really as simple as a child touching a hot stove for the first time and burning their hand...they learn to be cautious of the stove to avoid that pain again in their lives...whether or not the stove is truly *hot*.

As someone who bills themselves as *fiercely independent* (that would be me), my greatest Achilles heel is to NEED something from another. I have struggled with this dysfunctional thinking my entire adult life...and I continue to be confronted with it in later maturity...always finding a lesson time for learning just around the corner.

Somewhere along the way as a child, I learned that, to not NEED anything from another person, was a sign of great strength...and, in my early developmental years, this DID prove to be the case as I often would fend for myself in many arenas of life. It was apparent (through experiences I won't discuss here) the hand that held me could also crush me. But in adulthood, this learning became no longer functional in relationships and only served to WEAKEN my being in places I never knew should or could bend.

MS has a way of making me "needy"...it's symptoms are designed to bend what I think are even the strongest places of my physical and emotional being. It sneaks in without warning or notice and gives no outward definitive symbol of its presence, such as a broken bone or tumor. It never tells us up front how long it plans to hold us in it's grasp...sometimes gripping in very painful ways, then equally without warning, letting us go suddenly. MS defies logic and reason and turns the most solid of body and mind into a questioning hypochondriac at times. It moves from system to system and symptom to symptom, spinning the chamber on the figurative gun of life, as we wait in wonder or fear of an inevitable bullet...only to later learn, THIS TIME, the gun is not loaded...or, there IS no smoking gun at all OR a hot stove...just an imaginative fear there *might* be. MS sometimes takes away our mobility or our cognition, leaving us dependent on outside resources for our survival. It can cause the most tenacious to question their faith and values...and the most seemingly independent...to need...to become dependent on something, anything from another.

Today, MS has taught me once again, that I am weak in what I perceive as my strong places...and strong in the places I am most vulnerable. It teaches me to recognize, when I resolve my fears of *needing*, I actually become MORE self-sufficient and independent...and allows me to accept the caring hand(s) that hold me...until I am able to stand again on my own...

Sunday, March 15, 2009

Because I Just Need To Be Angry At Someone...

Dear Baby Doctor,

I've had some time to reflect upon my experience with you, and I've come to the following conclusion:


Yes, I said it...IDIOT. I'd add *betch* to the descriptive prose, but that might distract from the true implication of the sentence...


How dare you speak to me in a manner or tone of superiority when spewing your ill-conceived medical knowledge? Tell that to Gilda Radner or my dead grandmother, how you so casually stated my gastrointestinal problem could not possibly be related to "alarmingly large, probable ovarian cysts". I'm sure BOTH would betch-slap you from the grave if they could reach you, hearing you deliver absolute false information about signs and symptoms of the *Big O* (that's Ovarian Cancer, not Oprah). It is a well-known fact Ovarian cancer is considered THE silent cancer killer among women because it often presents with vague gastrointestinal symptoms...not unlike what I have been complaining about.

Now please, don't misinterpret me here: I am NOT saying I HAVE Ovarian Cancer...as a matter of fact, it is highly improbable I have anything MORE than "alarmingly large, probable ovarian cysts." But, to deliberately attempt to dispel my concerns with absolutely false information makes you...makes you...well...


Hundreds of thousands of women each year develop ovarian cysts...of those hundreds of thousands, only a small percent are diagnosed with anything more remarkable than "alarmingly large, probable ovarian cysts." But, the symptoms of Ovarian Cancer are as follows, and I quote them directly from the Mayo Clinic Website...you know...that OTHER clinic in the United States renowned for it's excellence in health care? That clinic YOU aren't a part of?:

  • 1. Abdominal pressure, fullness, swelling or bloating (check)
    2. Urinary urgency
    3. Pelvic discomfort or pain(check...well, actually abdominal and back pain)

  • Additional signs and symptoms that women with ovarian cancer may experience include:

  • A. Persistent indigestion, gas or nausea (major check)
    B. Unexplained changes in bowel habits, such as constipation (hello? DIARRHEA!)
    C. Changes in bladder habits, including a frequent need to urinate
    D. Loss of appetite or quickly feeling full (check)
    E. Increased abdominal girth or clothes fitting tighter around your waist (check...just thought it was fat)
    F. Pain during intercourse (dyspareunia)(hmmm...what's that again?)
    G. A persistent lack of energy (check duh)
    H. Low back pain (midback...whatever)
    I. Changes in menstruation (old age anyone?)

I dunno...it just seems like this information *should* have gotten to you at some point during your medical school years? I knew about it in 1986 when Grandma Goldie was diagnosed with Ovarian Cancer BECAUSE of gastrointestinal symptoms...and I've been acutely aware of this information ever since. It's sort of like, when you lose a loved one to some kind of disease, their process WITH that disease kind of STICKS in your head, you know?? So, perhaps "poo-pooing" me with your blatant and false information wasn't your best card to play...I already HAVE experience with that particular disorder.


Well sure...you can blame my anxiety about this issue on hypochondriasis...many women have already DIED because of doctors like you blaming their conditions on little more than "over-active" imaginations and anxiety, going untreated when treatment was critical. As a woman, I would have hoped YOU, in particular, might have developed some gene of compassion during your medical school years, which would assist you in your delivery of information...I don't ask that of the medical male species...they don't have ovaries.


I have never in my life HEARD of being admitted to the "wrong hospital" when it comes to receiving QUALITY medical care...perhaps the wrong SERVICE within the hospital, but never the wrong STRUCTURE! What on Gawd's green earth would POSSESS you to say something so IDIOTIC?!? And I DO have a witness to this. Perhaps you were simply hoping telling me this information would cease my questioning of your medical judgment??? Well, it worked. It was at this juncture in our conversation I knew in my over-active mind and gut...


You read my chart. You knew my background. Did you really feel it necessary to draw "stick ovaries" on a white board to make your point, given I went to nursing school perhaps before you were even born?!? I know my IQ wasn't mentioned in my chart, but I'm pretty sure my medical background/current job title was...YOUR nurses kept commenting to me how they "bet I saw interesting patients" in my line of work (to which I replied, "no more interesting than yours"...**silence fell**)...I didn't tell THEM I was a nurse by background OR that I worked in psychiatry. They bothered to READ my frickin' chart.


You neither diagnosed me NOR treated me for my ailments in the 24 hours I graced your "wrong hospital", and you have the audacity to question WHY I would want to be discharged?!? I returned home in no better condition than when I was under your care...deciding to take my medical treatment into my OWN hands...hands far more knowledgeable and competent than your baby appendages. Your partner in crime HAD me scheduled for the abdominal ultrasound that YOU changed in the morning to a CT scan...you know? The test you later told me I couldn't get because I was ADMITTED TO THE WRONG HOSPITAL?!? The test you stood at the foot of my bed in the morning, saying "probably would be unremarkable, so we should just go ahead with a CT scan and get that over with if you want?" The test I cancelled based on your already preconceived notion there was nothing wrong with me other than *viral gastritis*??? Only to learn it was THAT test which would have provided the "better" information about my "alarmingly large, probable ovarian cysts"???? Now, I have to arrange a ride for my dizzy-a$$ed head to see my regular ARNP to GET the ultrasound that YOU couldn't provide...but urged me to URGENTLY follow up and complete. WHAT THE HELL IS WRONG WITH YOU???? Don't tell me my "alarmingly large, probable ovarian cysts" are nothing to be concerned about, YET I need to urgently follow up because you don't KNOW if they are really cysts! SHUT THE EFF UP if you have nothing constructive or useful to say to me.

Or, better yet...go home and get out that little, plastic play doctor's bag your mother purchased for you for Christmas last year and feed your candied M & M's to someone else while pretending to palpate their "alarmingly large, probable ovarian cysts"...play doctor elsewhere...where lives don't matter...like on your Barbie Dolls. Because:


There. I feel better already...

Saturday, March 14, 2009

Do These Ovaries Make My A$$ Look Big?!?...

I don't even know where to begin? So, I'll just start at now and work backwards...but only briefly...I'm too tired to sit up and type right at the moment.

I just got home from a 24 hour stay in the hospital this evening. WHOOT?!? Yeah, exactly. This is why I have not been on the blogosphere or pestering any of you with comments on YOUR blogs...the CHEESE has been locked in and shackled...sequestered, for a lack of a better term...in an effort to figure out WHAT IN THE HELL has been going on in this body of mine!

And, unfortunately, still no answers...just more questions.

I could write tale after tale (believe me...hospitals are fraught with "tales") about this or that experience (like being in the ER with a blown pupil and thinking I was finally having the *big one*, aka, STROKE, only to learn this was a drug reaction), but again...I'm just too tired to go into it all.

What I WILL say is there has been some strong effort (and mediocre at best by the hospital) to figure out WHAT has been causing my (plug your eyes here if you are sensitive to bodily functions) constant spew of watery diarrhea for the past 10 days, WHY my potassium level won't stay charged, WHAT has caused an exacerbation of neurological symptoms following IV Solumedrol (ah, the Soly is supposed to work the OTHER way!), WHAT is causing my right abdominal/back pain, WHY my dizziness has worsened...and so the list goes on and on. I am, as one kind doctor put it, a "train wreck" right now...and I say, "Thank you. I resemble that remark." :-)

I've had test after test run with no conclusions...as a matter of fact, on film, I'm a star! Everyone concedes it is the (plug your eyes) blow out diarrhea (what I like to call *Burny Butt Syndrome* or *Chapped A$$ Disease*) that is causing my potassium level to drop drastically, but no one can locate the source.

Today while in the hospital, I had a CT scan of my abdomen done...I was told I had two, "alarmingly large" (7.5 cm and 4 cm) "probable" ovarian cysts on my right ovary and one (only 2 cm) on my left. I thought for sure my female Dooggie Houser (she looked to be 12...or, I could have BIRTHED her from my "alarmingly large ovary" and been her mother) would conclude THIS was finally the answer searched for and the cause of my ailments.

"Oh, no", she said, wearing her medical degree swiped from the Cracker Jack Box. "Ovarian cysts wouldn't cause the type of pain you are having or the gastric symptoms...even THIS size." (Her final Jepoardy answer was: Viral Gastritis)

She went on to draw on a white board HER rendition of my innards, which looked shockingly like a kindergartner's crayola marks, then proceeded to draw in my LIFE SIZED CYSTS for proportion...they were some Big Kahuna's, out ranking even the size of my svelte uterus. My friend, "T", and I exchanged glances without saying a word. It was apparent Baby Dooggie probably enjoyed art class more than anatomy and physiology...and probably got a C+ in both.

I tried to reason with BD, MD (Baby Doogie, Medical Doctor), saying that, well, YES in my years of experience I HAD heard of ovarian *situations* causing gastrointestinal dysfunction (Grandma Goldie DIED from OVARIAN CANCER discovered only after she developed GASTROINTESTINAL PROBLEMS!!!) and dear "T" even offered up her own medical *hystery* to point out, from personal experience, that YES even ovarian cysts can cause excruciating pain in the flank and back...BD, MD would not be swayed.

When I then copped the attitude of, "Well thanks for the info, doc" and proceeded to respectfully request discharge (you KNOW I'm lying there!), she was insistent I find follow up ASAP for my "alarmingly large, probable ovarian cysts". When I suggested that since I was already IN a hospital and perhaps if this was so urgent, SHE might want to go ahead and order whatever tests would be needed, she told me (I KID YOU NOT!), "Well, you're in the wrong hospital for that." *****THUD*****

Who KNEW that full service hospitals did NOT provide FULL SERVICE?!? ANYONE?!? Who knew that because I was admitted to a neurological unit I wasn't "allowed" to be seen for any other disorder?!? Good thing my heart didn't stop while I was there...they might have had to transfer me to the "right hospital for that".

So...I'm finally home once again with the P.O.D. (Princess O' Darkness, aka, cat), safe in my chambers/hut, and exhausted beyond belief. I decided I was too sick to be in a hospital anyway and would get better care at home, thus securing my discharge (which means no fists were thrown, but I was tempted)...I'll consult my ARNP on Monday...it's not like my "alarmingly large, probable ovarian cysts" are going to GO anywhere. But I ask you:


Wednesday, March 11, 2009


I've been sicker than a dog today post final 5th infusion due to what can only be attributed to a low potassium level...having muscle cramps, weakness, tremors, lightheadedness, extreme fatigue, and a very slow heart rate. Yesterday pre-infusion, my K+ level had already dropped to 2.9 (normal is 3.5 - 5.0) and this was AFTER a large banana bag infusion of K+ the day before. What can I say? I guess I've just got some very good kidneys on me.

You wouldn't happen to have a quart of potassium laying around to share, now would you? Argh...it's always something...I am SOOOOOO over this...

Monday, March 09, 2009

Ramblings Of A Steroidal Mind, Subtitled: Reality Is Only An Illusion...

There are horses standing in those rocks up there in that picture...or, have the rocks been painted to give the appearance of horses? These are the types of questions that plague my mind at 3:00AM while undergoing Solumedrol treatments for what is believed to be a recent exacerbation of my Multiple Sclerosis...or IS it?

I stare down at my arms and hands resting on this laptop key board and I note the bruising and swelling of holes, where countless needles have dared to invade my inner most spaces. My left wrist is bandaged with netting and gauze and thin pieces of IV tubing pressed tightly against my body...a reminder there is some *wound*...some sort of healing still waiting on the horizon. A view of my life that has become normalized in the most subtle of ways...complacent with surrender. After several days turning into several months turning into 6 years of seeing this same scene play out over and over in my life, my mind no longer adjusts my eyes to look for the *horses in the rocks*...I only see gauze, tape, tubing, and puncture wounds...I see what has become an accepted part of my life with MS.

I don't know the exact day or hour I allowed my mind and Spirit to believe this way of life was no longer an illusion...that this IS my reality...at least for today. But I do very much yearn for my illusion to return...I miss the wild horses I once saw in the rocks on my MS. I miss having the faith I will see them return in my mind again. I appear to be suffering from a lack of faith at the moment...a lack of belief in things unseen.

Perhaps faith is the grandest illusion of them all?...

Saturday, March 07, 2009

Not So Great A Day...

It has not been a good day...and to be quite honest, not a pleasant past 2 weeks. Steroids are creating instability in my mood and thoughts as I attempt to deal with debilitating symptoms of "something" now deemed MS in nature.

There is always so much I cannot write about here on CHEESE due to the known fact my place of employment reads this blog...suffice it to say, I am saddened by a recent turn of events that appears to be occurring completely out of my control in my work arena...where I have remained absent for over 1 1/2 weeks. I feel quite vulnerable and on unchartered course.

Today, I have had repeated lines speaking like an earworm in my head from one of my favorite Rilke poems...I believe this poem provides a good summation of my current position in life if one is intuitive enough to read between the lines:

It is possible I am pushing through solid rock
in flintlike layers, as the ore lies, alone:
I am such a long way in I see no way through,
and no space: everything is close to my face,
and everything close to my face is stone.

I don't have much knowledge yet in grief--

so this massive darkness makes me small.
YOU be the master: make yourself fierce, break in:

then your great transforming will happen to me,
and my great grief cry will happen to you.

~~Rainer Maria Rilke

Friday, March 06, 2009

MS Awareness Week In My Face...

I like to time my important relapses to coincide with holidays, awareness weeks/months, and important political issues. It's only fitting that MS Awareness Week should fall right when I am in the middle of MS wrangling myself. I've decided the most constructive thing I can think to do (beside lie in wait for potential steroid psychosis) this week is to throw my name in the hat and run for MS AWARENESS WEEK POSTER CHILD OF THE YEAR.

This is a highly NOT coveted award...much like being named A$$ Hole Of The Year...so I doubt there will be many of you who put your name on the ballot. That said, the least you could do is vote for me! I'm guessing by the 4th dose of IV Soly, I'll be tearing up my bedsheets with my teeth to create my sash and working on my acceptance speech...which will most likely only contain less than ten usable words after deleting the majority of swear words from the transcript...

Thursday, March 05, 2009

Full Circle Back To Multiple Sclerosis...

Gazillion tests run, done, and over. After ruling out everything from Ebola to the hunta virus, my medical team has now comfortably settled upon the notion my current, debilitating symptomology (dizziness/nausea/severe fatigue) IS most likely MS-related...this only took a week to determine, so I suppose I should be grateful and hopeful upcoming treatment will resolve the issues. But, I'm neither...grateful nor hopeful. I'm just plain worn down to a nub.

I go in tomorrow to start a 5 day course of IV Solumedrol...the drug of choice when "we" really don't know WHAT is going on. Sigh. Such is the life of a MSer.

Depending on how circus freak manic I get on the juice, I'll try to keep everyone posted here. Until next time...BrainCheese out...

(PS - just to freak out the science buffs, that picture up there is the chemical compound structure of the brand name, Solumedrol...anyone else see the word "ouch" misspelled in it?!?)

Wednesday, March 04, 2009

Needing Support...

I'm in a bad way right now...still dealing with this constant "non-vertigo" dizziness, nausea, and fatigue...it's been a week now that I have been suffering through this and, frankly, I'm growing quite weary, physically and emotionally. I'm not generally one who can move myself to ASK for help with anything...it's just my fierce, independent nature...and I feel quite humbled to even be typing this. I am reminded of that old AT&T commercial of "reach out and touch someone" by asking for such...but I could truly use some kind support these days.

I'm asking you to please be my *bra* for a bit...after all, we ALL know the Playtex bra commercial saying of "support can be beautiful" has far more implied meaning than the phone company...