If you received an email from me this morning around 7:40AM PacTime, it is spam.  My email was hijacked.  Do not open it!!!

Thought I should put up a quick warning here as some of you email me with questions, comments, concerns at various times. 

I suppose this is no different than having your package stolen off your front porch after delivery by the US Postal Service...both types of crime/fraud REALLY P!$$ me off though.

Sorry...

Powerful...

Is It MS Or "Something" Else?...

Every morning when I first get out of bed (or afternoon, depending on your time zone...heehee), my body creaks and moans like an old farm gate swinging in the breeze.  This joint is stiff, or that muscle aches, or...the list of questionable ailments an anomalies is quite lengthy.  From my teeth to my *innards*, there always seems to be some little annoyance or pain garnering my attention.

Before I left my childbearing years (that time frame where I strangely "forgot" to bear *child*), there seemed to be a monthly pattern of exacerbating aches and pains...of fatigue...of worsening Multiple Sclerosis symptoms...of FOUL MOOD.  :-)  It would pass, generally like a finely tuned atomic clock and usually with anatomical precision...shortly after dear friend "Flo" began her monthly visitations.

Sometimes, I get these involuntary muscle twitches in my arms, legs, or face...something the medical world calls, "fasciculations".  These annoying, non-painful, under-the-skin-rippling-like-a-worm-crawling sensations are at best labeled *interesting*, and at their worst, labeled *freakin irritating*!  They usually occur following a highly stressful situation (such as my work), after working in the garden, or sometimes without any rhyme or reason.

Lately, I've been gathering inflamed tendon diagnoses...Calcific Tendonitis of the shoulder, Achilles' Tendonitis of the ankle, de Quervain's Syndrome (tendonitis) of the wrist.  My TENDONS appear to be irritated with ME lately as they inflame and aggravate my joint movements.  Lifting an item or walking from my lounge chair to the refrigerator (something I choose to call "exercise"!) can be nearly impossible without excited utterances such as, "Dayum, that hurts!"

                            ~~~~~~~~~~~~~~~~~~~~~

If I didn't know better, I'd be inclined to worry any and all of the above could be or ARE signs my Multiple Sclerosis is getting worse or I'm having an exacerbation/relapse!  And, although my worries/ruminations/obsessive thinking "could" be true, it's not likely...and I'll tell you why.

Let me first put on my lab coat, stethoscope, and straighten my diploma on this virtual wall...the diploma I earned studying at the University of Internet, the esteemed College of Wikipedia (because we all KNOW everything on Wiki is true and correct...ehem), and the School of Hard Knocks.  As I've said before, I only PLAY a doctor on the Internet!  But, I AM one of the experts regarding my OWN body, so I will (and can only) speak to it.  DISCLAIMER: YOUR body is an absolute mystery to me and any advice you seek should be obtained from a qualified medical professional who has earned a degree from an accredited school, NOT the Internet.

We've all done it...we've all had strange or new onset *stuff* happen in our bodies that concerns us...we've all wondered (either pre-diagnosis or post MS diagnosis) and uttered those four, fear-laden words, "Is it Multiple Sclerosis?"  We've all waited and pensively observed, or immediately dialed our medical professionals, or ignored it hoping it would go away, or have been relieved when it DID go away, or demanded multiple medical tests to "rule out", or tried a new treatment our friends read about on the Internet that involved a chicken and a trapeze cure, or endured unwanted poking/prodding in our spines, heads, and muscles because our doctors felt a need to *just be sure*, or endured side effects of steroid infusions or pills because the quality of our lives diminished due to the "new stuff".  Yep, YOU are a liar with MS if you haven't *wondered* about what might be going on in your body and *if* you should be concerned (or at the minimum, in denial about your finely honed coping skills).  Just sayin...

When I was first diagnosed with Multiple Sclerosis, now some long and trying nearly 9 years ago, EVERY, sniffle, pain, creak, or fart that blew sideways coming out of my body was cause for alarm...EVERYTHING, from major to minor, and even unrelated to my neurons (such as a cough), was suspect of worsening MS.  Fatigue felt after a 3 hour insomniac night HAD to be MS.  Blurry vision (not aging eyes and need for a new lens prescription), HAD to be MS.  Stiff legs after gardening?  MS.  Diarrhea?  MS.  A failed love relationship?  MS.  OK...I'm exaggerating a bit here, but I think you get the picture.  :-)

It was my fear of the unknown that fanned the fires of doubt and uncertainty within my MS-riddled pea brain...not science, not statistics, not facts, and certainly NOT anything anyone said to reassure me.  I felt I had no experience with this new MS body and, therefore, *should* be hyper vigilant.  After all, the diagnosis snuck up on me during what I had come to believe was just another attack of bad posture, overuse, and arm/neck pain...I could not trust my own, inner voice, and chose to listen more closely to the loud alarm of fear ringing in my head.

Fortunately for me, time has been the best teacher...even when I've been screwing around in class and not paying much attention to the lecture. Time DOES heal many wounds...especially the large lesion that was eating away at a primary area of my brain called, "REASON".  This area of my brain, although scarred by fear, has seemed to scab over nicely and it is functioning much better as I age with MS.

I have learned FOR ME, most things are not MS.  I have learned MS "most likely" won't kill me and statistically, I am in far more danger of death at my JOB than I am from dying afflicted by Multiple Sclerosis.  I have learned the fine art of "wait and see" before frantic 911 dialing of my doctors.  I have learned if it interferes with my functioning enough, I SHOULD seek advice/call my doctor.  I have learned there are many "home remedies" and healthier choices I can make to assist in coping with MS, such as diet, exercise, social stimulation, rest, etc.  And, I have educated myself by devouring information about MS...weighing out the pros and cons of my learning, and listening to my inner wisdom to tell me which pieces of this learning are important for me to incorporate into my own well-being.  I have taken my neurologist, Dr. She Who Will Not Be Named, off speed dial and added speed dial numbers for massage, supportive friends, physical therapy, calling in sick for work when I need to rest, and an assortment of *other* urgent numbers that support my wellness.

Wisdom and time have taught me to first look for the *Something Else*, then the MS when dealing with new "stuff" in my body because, either way, the outcome is going to be the same.  I am going to seek medical advice and attention when my functioning is limited in some way that causes me to have difficulty coping.  Some things should NOT be ignored or approached with a *wait and see* attitude...like chest pain or blood gushing from my aorta.  It is the every day, more chronic and unknown origin issues like muscle aches or pains, that I am talking about here.  THESE are the things I have grown confident in addressing as my own, personal expert on my body.

Not everything is Multiple Sclerosis...and not everything is *Something Else* I should be alarmed by.  Just like my car, as I age my exhaust is sputtering more and I'm a little harder to start in the mornings...I too, one day will go to that great junk yard in the sky when my parts wear out...but until then, I'm choosing not to clutter my already failing brain with fear of the unknown and continue to put one foot forward into this world of *surprises*...

Survivor's Guilt or Living Forthright...

     Recently, I became aware a second cousin of mine was diagnosed with (wait for it...) Multiple Sclerosis this past fall.  Within a matter of months, he spent a full month in a hospital and is now unable to walk.  He has to catheterize himself several times a day, attends PT several times a week, has struggled with his insurance company just to GET the care he needs paid for, and yes...he is younger than me.  We both come from a similar genetic background (or perhaps "cesspool", depending on how one feels about having faulty disease-producing genes!), we both grew up in the same region of the US, we are both diagnosed with MS, and yet our EXPERIENCE of the disease is starkedly different.

     If you are someone who has followed the several years of blather on this blog (and I question your sanity if you HAVE!), you will recall I was diagnosed with Multiple Sclerosis in 2003 - the first five years post diagnosis were quite traumatic as I struggled to come to terms with what I believed was impending disability and a lifetime of misfortune.  I tried the many "remedies" available, which only seemed to worsen my symptoms and I prepared myself for the worst.  In 2008, I stopped all DMD treatments and adopted a personalized wholistic approach to my wellness...it has worked out well for me (but not something I recommend for YOU because MY way could kill YOU...just sayin').  Two months ago I had a MRI and neurology check up...my disease process has stabilized and there are no new or enhancing lesions in my noggin'.  My neurologist (Dr. She Who Will Not Be Named...yes, she still exists!) shakes her head at me and mumbles under her breath, struggling with the conflict between being PLEASED I am doing so well and her inner unrest in being WRONG about my particular treatment (which she will not admit, I might add).  I have only minor residual symptoms and only occasional flair ups which do not even constitute *relapse* in my book.  I continue to work full time, maintain a yard and home, chase the P.O.D. (the Princess of Darkness, aka, my evil kitty), and have walked the Seattle 1/2 Marathon for the past 3 years each November (and that would be THIRTEEN POINT ONE PAINSTAKINGLY GRUESOME MILES...ehem).  Wow...ain't life grand?!?  I have no real complaints...well, at least only the one about losing weight and why is it so freakin' difficult or why is my hair turning Seattle-Sky-Gray, but I digress.  :-)

     ~~So why do I feel such a knot in the pit of my stomach whenever I think about or talk about my cousin?  And why do I very privately tend to want to avoid being around other people with MS who's symptoms are prominent or who's mobility is profoundly limited?  And why do I quietly think I SHOULDN'T *flaunt* (aka, discuss) my wellness lest I be excommunicated from the "MS Club"?~~

     There is a psychological phenomenon called "Survivor's Guilt" (when severe, called Post Traumatic Stress Disorder) which often plagues people who outlive, overcome, are left behind, truly "survive" catastrophy, when others don't.  Most practical definitions of this syndrome go something like this:
 
 Survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.

     This syndrome was first noted post Holocaust in those that made it out of the horrific concentration camps, but it has also been identified in persons living through combat, natural disasters, loved one's of completed suicides, broad employment layoffs (by those remaining employed) and so on.  And, it is also seen in those that "survive" traumatic illness, such as cancers, heart attacks, etc...and...it can be felt by those that overcome symptomology of diseases when others they identify with who share similiar diagnoses do NOT stabilize or who continue to worsen in prognosis.

     OK, let me first explain, I do NOT suffer from clinical "survivor's guilt"...the above examples I provided in questions within the ~~ ~~ paragraph are extremes in thinking, but they are not questions that cause me to avoid or change my functioning.  I provided the questions above as examples for any reader who might be having similar thoughts, but unable (or God forbid afraid) to say them outloud.  And I have heard others with MS voice common themes...those that are doing well with their disease and by those that have been able to overcome great obstacles in symptom management.

     As human beings, we tend to gravitate toward what is familiar and toward those that share similar experiences.  Because Multiple Sclerosis knows no common theme, it is sometimes difficult to share comfort with people who's experiences with the disease are drastically different.  We can end up feeling alone, different than, or even *guilty* when we perceive others having it worse off or better off than we do.

     I haven't written much on this blog over the past many months...in part, because there hasn't seemed to be an *MS story* in my life and in other ways, because I've been doing so gosh darned well, I've been filling up my free time with other activities!  But I think I may be returning to dabbling again in a bit of face-stretching-yawn-type-blather here because I only have LIFE to write about these days...that OTHER thing we all share besides Multiple Sclerosis...that day to day activity we can either refer to as SURVIVAL or we can refer to as LIVING...

What Did You Do???

That was the subject line of the email I received today from Dr. SWWNBN (you remember her, don't you?...the neurologist, Dr. She Who Will Not Be Named??) while I waited in young Sports Medicine Ortho Doc's waiting room to be seen this morning.  Apparently Healthcare has entered the larger "social media" scene and they now have their own networking capabilities amongst themselves, much like Twitter (only it's called MyChart...how *original*.).  My ER visit somehow triggered an external "twitter" to my neurologist who immediately "tweeted" me via email, like a squawking peacock (have you ever HEARD a peacock squawk?...if not, here you go)  Nothing is apparently sacred or private anymore.  It's not like I CARED if Dr. SWWNBN knew I was in the ER...I was more concerned there would be a notation in my chart of me telling the ER Physician's Assistant that I was "on the lam" with my neurologist!!!  And yes, I DO say that to other healthcare providers...hehe.

But this brings me to another point about healthcare, MS, and other strange notions (just trying to bring the Multiple Sclerosis tie-in here since this IS an MS blog...still...I think).  I have now very recently had 3 or 4 contacts with *other* healthcare providers who are new to me and, each time I've had to "disclose" the MS issue.  I say *disclose* because lately, this feels like a big, dirty secret!  For some reason, telling providers (who do not already know my history) that I have MS has become akin to disclosing I wear men's underwear, like to be spanked, or eat my boogers...none of which I DO by the way!!!  Well, except for the spanking part, but I digress...LOL

One might think this feeling is the old "but you look so good" (so how could you have MS?) topic that is discussed in MS circles, but it isn't.  I have no worries they won't BELIEVE I have the diagnosis (pull up an old MRI and it's pretty clear)...quite the opposite.  It is when I tell them I am diagnosed with Multiple Sclerosis and they immediately inquire what Disease Modifying Drug I am taking that I cringe.  The look on some of their faces is interesting if not down right dismissing!

I find myself quickly doing the verbal scramble to explain I already have been ON most every DMD out there (except Fingolimod I think?!?) and made an executive decision (much to the chagrin of the neurological world) to stop all treatment...that currently I am doing WELL without the DMD's and taking things one day at a time with improved diet, exercise, and the roulette wheel.  They still look at me like I'm a liar...or worse...they look at me like, "well what are you doing HERE then if you don't tend to follow your healthcare provider's advice?!?"  Maybe it's just my bizarre opinion, but I don't think doctors LIKE being told "no".  :-)  And they REALLY don't like being told something besides drugs or what they were taught in medical school works...for me...right now.

I suppose really my recent (and old) healthcare providers share the same sentiment as I do...just not the same opinion.  They firmly believe in THEIR medicine/treatment and I stubbornly believe in MINE.  Two peas in a pod I guess...of like minds at opposite ends of the spectrum.

I DO try to qualify my position with the idea I am open to changing my opinion should the internal *science* of my body or belief system shift...and I usually explain the true value of "medicine" psychologically for both the physician AND the patient is belief whatever is prescribed will work (see placebo study outcomes over the years, or a more recent one here: http://abcnews.go.com/Health/Depression/story?id=117057&page=1 ).  It's hard to have two RIGHT people in the same exam room as exam rooms tend to be quite small for two big and bull headed people to fit into...sigh.

On a *happier* note, I did get "the shot" today for my shoulder and there is no surgical intervention necessary at this point.  Apparently, I suffered a bad contusion in my socket, which resulted in fluid accumulation in the joint, subsequent inflammation and swelling, and ultimately F^<@ing bad pain!  I am on the cautious mend...I was told to stay off unstable high places, refrain from any boxing matches, no stunts on the trapeze (especially when being SPANKED...just can't let that visual go, can I?!?), and head to my nearest Physical Therapy office for some PT. 

I can do that...all of it.  :-)  Anything to avoid seeing yet another new healthcare provider who MS-guilts me or be asked the question, "What did you DO?!?" again.  Who knows, my next story may include SPANKING in my explanation of pain or injury to providers just to throw them off the MS trail scent...

Commisery Loves Company...

Yeah, yeah...I've got nothing better to do while I sit around at home *recuperating*, so you get the second blog post in a year here.  It IS a better day today in the world of Cheese, I must say.  As the haze of narcotic-filled drama lifts from my junkie eyes, I am beginning to see a faint light at the end of this ordeal.  So don't anybody MOVE because I don't want a breeze to blow this candle out!!

I managed to slink in to see young Sports Medicine Ortho Doc yesterday and left with nothing more than when I went in...except a mother load of Oxycodone, that is!  WTF?!?  Most people who are TRYING to get doctors to prescribe narcotics can't...I tell them I don't WANT anymore painkillers, but a remedy instead, and I walk out with drugs that have a street value high enough to pay this month's mortgage.  I just don't get it...

OK, I suppose it was the tears.  I probably would have prescribed something too, to get me out the door quickly after I started bawling like a farm yard baby calf (insert sound effect here).  Strangely, I am learning the stoic approach to pain doesn't really lend any empathy, but sobbing like a two-year-old sure causes anxiety on the part of the professional!  I am considering sobbing hysterically on the phone next time I just need to make an appointment and see if I can get in sooner than a month from the time I call...hehe.

So, my appointment began by young Sports Medicine Ortho Doc sending in his kindly female Physician's Assistant to give me the once over and hear my tale of woes regarding my injury, pain, and recent ER visit.  She was very kind...she offered me the Oxy script immediately and I explained I already HAD narcotics at home (compliments of a neurologist who also likes to prescribe big drugs in hopes her patients will STFU, too) and I didn't want to continue taking them, but rather find a more permanent solution to the acute pain.  I also disclosed the high amount of NSAID (Ibuprofen) I had been taking just to get 2-3 hours of relief, but I was having to take it way beyond the recommended 24 hour dose.  She checked me over (physical exam), then said she would consult with young Sports Medicine Ortho Doc, and there would probably be some repeat x-rays in my future.

I didn't wait but a few minutes before young Sports Medicine Ortho Doc entered the room with his laptop computer and what appeared to be the skeletal version of my left shoulder plastered across the screen...the x-rays the ER took 2 days prior.  I must digress here and say I rather LIKE the x-ray version of my arm as it cuts off considerable fat and, other than a faint shadow around the humerus, I DO look svelte!  But anyway...

Young Sports Medicine Ortho Doc puts me through the same physical exam as his kindly Physician's Assistant did, then takes a stern look with me to inquire WHY I had been taking such high dose NSAID?  I explained again...adding that I didn't like the effects narcotics had on me as far as nausea, drowsiness, and feeling out of it.  He maintained his stern look (which is pretty funny if you think of a 15 year old boy trying to look *cross* with you!) and announced it was "far better to feel out of it than to be on dialysis because you've blown your kidney's out".

**My head snapped up with the "stern" look of a 47 year old beauch about to attack and eat her prey**

"Yes," I calmly said, albeit my lips were already quivering with a mix of anger and angst.  "I realize the dose I've been taking is far above the recommended dose.  But you see, I WENT TO THE ER and they offered me nothing, no advice, no words of encouragement, and no pain management...they just said to come see YOU.  All I got was this expensive sling", I said pointing to the $750 dollar contraption that cost $10.00 dollars to make.  I could tell we were NOT understanding each other at this juncture.

Young Sports Medicine Ortho Doc changed his pose with me and began showing me my x-rays on his high tech laptop...he pointed out what he thought were abnormalities (and never ONCE commented on my svelte skeletal structure...boo!) and told me he needed to see an MRI (MSer's...we KNOW the MRI routine).  He said he couldn't be certain, but was concerned I had a lesser density area of the head of my humerus bone and (again wasn't certain) that I may have a bone fragment "torn" away in the shoulder.  He continued talking while I stopped listening.

Seriously?!?  Bones do NOT tear.  WTF?!?  Somewhere in his talking he said the word "surgery" and I went on auto-pilot cruising at an altitude that lacked oxygen and was making me lightheaded.  Things blurred.  His medical assistant/handler came into the room to schedule my MRI and announced they only "do" MRI's Wednesday through Friday and there were no appointments this week, so "how does next Wednesday sound?"

**Commence bawling like a farm yard calf with full sound effect here**

Somehow I managed to choke out the words, "that does not work for me" and told the handler maybe I had misunderstood her?  Did she seriously intend to have me wait ANOTHER 7 days before obtaining the test that might possibly diagnose the acute pain??  I started to leave without scheduling...

PATHetic.  The handler then announced she had procured an appointment at a different location for the next day for my MRI...she said it as though she may have just discovered the Theory of Relativity or the appointment had just suddenly fallen out of the sky into her lap.  Surprise...

Somewhere in my PATHetic-ness, I DID inquire about the cortisone shot I had really come in for in the first place...the handler and the kindly Physician's Assistant stepped back ready to fend off a cobra strike.  The kindly Physician's Assistant explained (again...I guess I missed that part of young Sports Medicine Ortho Doc's speech due to my high altitude cruising earlier) they could not give me the shot today because not only would it interfere with the MRI results, it "could" do me more harm than good in the long run.

I left the office eventually in my expensive sling but at least with an appointment for the MRI in hand (my still good hand) and today had the MRI done.  I filled the mega-script narcotics and did try the crap yesterday, but again decided I would rather suffer pain than be unresponsive and still HAVE the pain.  And oddly, today is a much improved day...the pain has lessened significantly on it's own (no thanks to the Medical Establishment) and I can lift my arm about 6 full inches from my side and I'm tolerating some range of motion exercises better!  WOOHOO!!  That's a mighty improvement.

Who knows?  Given some time, I may be back to BEAUCH SLAPPING people again in no time...doubt anyone will want to prescribe me narcotics for THAT...

BAAACK! WITH A VENGENCE..

Well, Hellooo!

Yes, it HAS been over a year since I posted anything here...thank you for noticing.  Ehem.  I've been busy living life, working, and paying my mortgage.  Yes, apparently I DO still have MS somewhere in my pea-brain, but for the most part, it continues to keep itself on simmer on the back burner...WooHoo.  I am still off all the DMD's, have not needed any ROIDS for well over 2 years, and continue to be employed full-time.  Now don't be a "hater" bout this, Mkay?  It is what it is...for ME, but prolly not for YOU.

But just because I am not frequenting my neurologist's office every five minutes anymore with an MS complaint DOESN'T mean I am exempt from the dysfunction of the Medical Establishment (ME) these days.  O' quite contrare', dear-ies.  I still have *issues* with living and I still have delightful encounters with the Medical Establishment...which is why I am coming back to this blog today...

I probably should have titled this blog post, "The System IS Broken"...but it's hard to sheepishly return to something I haven't paid any attention to for over a year, then blast out an opinion, still narcissistically thinking anyone out there still CARES what my opinion may be (if they ever did)!  Perhaps it is only the painkillers talking now anyway...

Saturday evening I was assisting with the hanging and OCD straightening of some pictures while standing on a not-so-secure-chair and, as would be typical for a blundering idiot, I managed to fall off said not-so-secure-chair to the floor.  After the laughter ceased from my graceful performance piece (because I MEANT to do that...hehe) and much later in the evening, I began to get twinges of pain in my left shoulder and neck, which became pounding aches while trying to sleep at 3:00AM.  By Sunday evening (24 hours later, but seemed like a week), the pain in my shoulder was so great, I began contemplating my Last Will and Testament (because I realized if I died from this mystery pain issue, there were a couple of people I wanted to add and delete from my Will!).  I had out the ice bags, the Ibuprofen, the narcotics, and dusted off the Bible (just in case).

Now, for those of you who used to read this blather, you may recall I have *issues* with the Medical Establishment anyway and will generally avoid the Beast at all costs...and, because the last time I was in an ER it was because I had removed a Scopolamine patch, then promptly stuck my finger in my eye, causing my pupil to "blow", and a subsequent  emergent $7,000 work up for a stroke that I didn't have...well, I am a little embarrassed to go through those doors again unless I am squirting blood from my aorta and really can't apply pressure myself to stop the hemorrhage!

So, I gritted my teeth, chewed the leather strap, and waited it out until Monday morning.

Because I have been assigned to so many specialists in the past for so many reasons (some necessary, some unnecessary), I already have my name on the roster of an Orthopedic Doctor.  At the stroke of 9:00:01 Monday morning, I hit the speed dial for young Sports Medicine Ortho Doc and pushed the magical buttons several times to reach a live person...with my good arm/hand.  I was told by the young Sports Medicine Ortho Doc's gate keeper that the soonest I could get an appointment was Wednesday and to try calling my Primary Care Physician...*click*.

The pain was too great...I dialed my PCN (Primary Care Nurse...because I believe in ARNP's far more than MD's) and pushed the magical buttons several times again to reach a live person...only to be told my ARNP was on vacation (how DARE she be during my time of need?!?).  I was advised by the 12 year old receptionist at my PCN's office to try calling the Urgent Care Clinic instead.

Sigh...the pain continued.  So I looked up the number for the Consulting Nurse for the Urgent Care Clinic I have gone to in the past and dialed AGAIN.  This time I got a live person who took my information and told me someone would call me back.  I waited...in pain...less patiently than I had waited at 9:00:01AM.

Eventually a Consulting Nurse called my number and I answered it before the *ing* could sound on the *burring* noise the phone makes.  The Consulting Nurse asked me a bunch of questions, wrote down some information (like what meds I take daily), then advised me to GO TO AN ER because she felt my symptoms warranted an ER visit per her checklist sheet she was using to tentatively diagnose my condition because free thinking is NOT a part of the consulting component of healthcare.

**THUD**

I girded my loins, took an hour to dress myself with the use of only one arm and the other in bad pain, and headed to my local ER...only to wait another 2 1/2 hours before getting into a room (which frankly is a pretty short wait these days at an ER, given EVERYONE now uses the ER for primary care issues due to lack of insurance...but I digress).  I had my blood pressure taken and 3 x-rays of my shoulder before a Physician's Assistant knocked on my curtain and introduced herself...she told me she had to wait until the radiologist (at some remote site in Liberia) could read my x-rays before she could talk to me and left.

GOOGLE is a wonderful search engine...and, in my obvious spare time, I began GOOGLING (verb) my condition.  I AM a healthcare professional myself, after all...I know how to GOOGLE as well as THEY do!

Rotator Cuff Injury...Ta Da!  Classic symptoms, moderate to severe pain, inability to lift the arm laterally, deep/aching pain in the shoulder joint, clicking noise with attempted movement, pain much worse at night.  GOOGLE even told me the treatment:  rest, ice, passive range of motion exercises, cortisone shot in the tendon.

By the time my x-rays were transmitted electronically to Liberia, read by the radiologist, called back to the PA in the ER, and her return to throw back my curtain and announce her diagnosis given to her by the radiologist, I already HAD the diagnosis in hand...the look on her face was one of let down when I told her first I was pretty certain there was nothing broken and I had sustained a Rotator Cuff Injury.  She "concurred" (I love using that term).  I also had Calcific Tendonitis in the shoulder (she got to add that one to trump me) as seen on x-ray.  She told me I would probably need an MRI as well as there was a high probability I had torn the cuff, but that wasn't a test they would typically do in an ER because there was no "urgency" (like the urgency of someone having a freaking stroke or THOUGHT to be having a freaking stroke because they stuck their finger in their eye with medicine on it!!). 

I explained I had already been doing the rest, ice, ROM to the extent I could, and taking way too many narcotics/anti-inflammatories to try to cut the pain (causing me stomach upset and probable ulcer) and inquired about the cortisone shot to give me some relief.  And THIS is where I became painfully aware of how broken the system is:

The PA told me, "Oh, we don't give cortisone shots in the ER because it's a specialized shot and you'll have to see an Orthopedic Doctor to do that because we don't want to rupture your tendon in the ER."  She gave me a sling, told me to do what I had been doing, and go home and see my young Sports Medicine Ortho Doc.

                                  ********************

Day two off work and I wait...in pain...for my Wednesday appointment that I made on Monday because apparently only a SPECIALIST can do "special" treatments.  I called this morning at 9:00:01AM to the young Sports Medicine Ortho Doc's office to inquire if I could be on a wait list for anyone who may cancel today because I am only 10 minutes away from his clinic and remain in moderate to severe pain.  I was told by the young Sports Medicine Ortho Doc's handler that the doctor was in surgery all day and not in the clinic...apparently there are also SURGICAL repairs for my condition.  I GOOGLED it...

Going Rogue With MS...

In the words of the now famous (or infamous, depending on your political slant), "I've gone rogue". Personally, I think the Cheese looks fabulous super-imposed on the Palin cover (enjoying it now before the Republican lawyers contact me regarding "infringements"...hehe). But, anywhooo...

But for the grace of God go I...perhaps that would be a better title for this post. Yes, it HAS been over 6 months since I visited this blog (or YOURS, for that matter), and I wish I had tales of world travel or some other exciting news to share as reason for my absence, but I don't. Frankly, it's a rather complicated explanation, which I will try to simplify now: I'VE GONE ROGUE WITH MULTIPLE SCLEROSIS.

OK, maybe that DOESN'T exactly simplify my explanation so, let me break it down for you briefly here. I was diagnosed with MS in 2003...I spent nearly 6 of the last 7 years trying every treatment approved by the FDA for slowing the progression of MS (and one or two NON-approved ones here and there)...and the MS only seemed to worsen OR I felt so incredibly ill from the medications, I had moments of WISHING the dayumed disease would just kill me. In December 2008, I made the decision to stop all "approved" clinical treatments, believing in my heart of hearts I would much rather have a year or two of NOT feeling ill from medicines and accept potential disability than 5 or 10 years of feeling like hammered sh!+ and STILL potentially become disabled. Alas, there are no guarantees with MS...

In the summer of 2009, amongst detoxing from nearly 6 years of chemicals in my body, I began a "new" approach to living with my version of MS. Perhaps some might simply label it as DENIAL, but I labeled it as a RENEWAL. I ceased worrying or focusing on what the disease "might" do to me and began living WITH it. I started a new exercise plan, a new intake plan, and a new *mental health* plan...and, strangely enough, this approach began working for me. I lost nearly 40 pounds (although winter assisted with packing a few pounds of that back on my less than svelte frame!), began having less fatigue and more energy, and basically (from friend's daring reports) was a more PLEASANT person to be around (imagine that?!?). MS became a thought/problem on the back burner of my sometimes misfiring brain and I refused to acknowledge each and every ache/pain as a "sign" of impending misfortune. I went ROGUE with my MS...

This approach has worked well for me...most days now, I barely give thought to the disease. I feel better than I have in at least 7 years and I have packed an incredible amount of activity into my life over the past 6 months. I think in ceasing posts on this blog, I was also able to put "out of sight, out of mind" the problems associated with my MS. I simply didn't want to talk about it, read about, or dwell upon it. And today, I really DO feel fortunate and think, "but for the grace of God go I". I am content, peaceful, and finally LIVING again.

My *renewal* has certainly not left me disease-free...MS is still present in my life, but to a much lesser degree than when I previously focused on it daily in this blog or via reading other wonderful MS blogger posts. And I still DO have those mornings (which sometimes turn into days or a series of days) where MS reminds me it is still lurking in my brain...a simple fall to the floor or dizzy spell, or weakness, or pain, or "brain fart", or tightness in my legs/chest, reminds me I am mortal and I carry the disease called Multiple Sclerosis inside me. That's life...unpredictable and ever-changing. And it is MY life...which I choose to live however I want to.

It has been over 18 months since I last sat hooked to an infusion pump, either receiving Tysabri or steroids...I've enjoyed that freedom. I do NOT necessarily recommend *Going Rogue* to anyone else with MS...I am only telling you what has worked for me. This was a long thought out choice I made that ("but for the grace of God go I") has WORKED for ME. We are all different in our disease process and each make our own choices how to manage that AND what consequences we are willing to live with in our choices. I AM living with mine...

OK, that went a little beyond BRIEF explanation! Now on to what the Cheese HAS been doing with her life since my last post...I'll also try to make this *brief* because basically, I'm only adding it for filler. LOL

January brought the ending of the journey for a dear colleague and friend...I was depressed. I still miss him. Another coworker and I put together a beautiful video tribute of his life for his memorial service in February.

February came with a trip to the Midwest to visit the sister of Cheese...family...what can I say? Perhaps that is sufficient. I DID get to hear my young aspiring musician/singer niece perform while there, which brought tears to my eyes...she did NOT inherit that talent from me! February also brought a trip to Urgent Care and a scare with the medical profession due to a serious upper respiratory infection. I managed to skirt disaster with several oral medications and once again cheated the Grim Reaper out of another soul! I also attended the first of three colleague retirement parties (we are leaving/dropping like flies at my "govment" job!).

March, from what I can recall, was a fairly quiet month. Whew...another retirement party, a long, drawn out winter, and more rain.

April promised Spring and she lied...although, June promised Summer and she's a lying whore, too, but I digress. Another sinus infection plagued me and I discovered the use of the *neti pot*...gross little thing, but seemed to ward off yet ANOTHER round of medications.

In May, my colleagues and people I THOUGHT were my friends, decided to vote me OFF the island and into a Union Stewardship position at my job...I'm still considering writing each and every one of them out of my will for this, but have stopped short of homicidal intentions. :-) This is not a job I take lightly nor is the learning curve an easy slope. Just call me Norma Rae...

June (we're still IN this month, aren't we?!?) as I mentioned, was supposed to bring the beginning of Summer...we are still waiting on that here in Seattle. I hate weather forecasters...they offer false hopes. I have walked in more cloudy, rainy days on wet streets than I care to mention (other than to subtly say I have continued my treks across town in an effort to drop my winter pudge!). More Union meetings, another huge retirement extravaganza for one of my *X* friends (he WAS one of the Union Shop Stewards I have so ineptly replaced...bastid for retiring after 30 years!), a viewing of the highly acclaimed Cirque Du Soleil performance - KOOZA, a tense contractor/neighbor issue of replacing a falling down fence line, and...STILL no summer to speak of. I also had the wonderful opportunity of meeting IN PERSON, bloggers, Jen and Lisa, from the east coast! Hoo Yah!!! I greeted them at the hotel with a sign bearing my profile picture so they might recognize me:

Had a magnificent time touring some quick sites of Seattle and hearing what I considered *exotic Jersey accents*!!!

Here's hoping July brings some sunshine short of a heat wave...I still have no tolerance for heat (and NO, Joyce...STILL no air conditioning unit!). July promises gardening (if the sun ever shines for more than a few hours), more Union activities (we are in process of preparing for contract negotiations in the shadow of a huge county and state budget deficit...of course, I inherit THIS mess!), another celebration of the birth of the Cheese (should I make it to the end of the month!), grilling, planning a trip to the coast for a few days, and more action-packed *fun* at my job. Throw in several more treks around the "hood" to complete another hundred mile walking summer, and I'd say my schedule is full in the upcoming month.

I have not yet decided if I am returning to this blog to write about MS...after all, I seem to have SO little to say about the disease from my own perspective AND there are sooooo many other wonderful MS bloggers out there spending considerable time researching, talking, sharing, and discussing Multiple Sclerosis...I pale in comparison because, as you already know, such LITTLE thought goes into anything I write here! We'll see...

Here's wishing y'all a pleasant summer! And now, I'm continuing to skip down my *rogue* path...

MIA...

Thank you to the many who have politely tolerated my silent disappearing act here on CHEESE. I am alive...dealing with multiple personal issues and losses over the past two months that have kept me incredibly preoccupied and quiet. I WILL plan with good intention to write again on this blog...just not today. I am pecking THIS tiny post from a cell phone somewhere in rural Missouri at the moment!

I also apologize to those of you who have sent me links to your blog to add to the CHEESE blog roll...I will get around to adding you there...again, just not today.

Yeah, Yeah...So It's December Already...

...and I haven't posted anything here for several weeks. Life happens.

I'm home at the moment with swollen glands in my neck and severe fatigue...ruled out that any of this is MS-related, but not so sure about the possibility of Ebola, Hantavirus, Cat Scratch Fever, or the good old 1500's plague. I DID complete the Seattle 1/2 Marathon Walk last week on Sunday...got the T-shirt and the medal to prove it...also got a half dollar-sized blister on the bottom of my right foot, but who's complaining?!? I've been busily "recovering" from the event ever since.

Just a few odds and ends to entertain, annoy, or disturb you:

1. Yes, Seattle IS now known as the cop killer city of the United States...we've had five police officer murders in the area since the end of October. Last weekend, I spent much of the night awake as helicopters circled overhead searching for a "suspect" in the recent shootings...that "suspect" is now dead...an officer shot and killed him...poetic justice, if you ask me.

2. I am receiving numerous "spam-type" comments to this blog daily. Anyone else have this sort of problem on their blogs? And just so you spammers know, I do not NEED cheaper drugs from Canada or Russian female escorts at this time...I HAVE health insurance and I don't speak Russian (or Canadian, for that matter...LOL).

3. It is colder than a well digger's ass once again in Seattle...frankly, I'm kinda hoping there really IS something to this global warming theory...would like to see a warming trend near me...just could do without the acid rain if possible.

4. I have made FOUR (count them -- 4) grocery bags full of Grandma Goldie's Holiday Snack Mix this year. This endeavor must stop...it has grown into a massive production and expense. To all of you expecting your yearly dividend of mix, be aware unless you provide proof of citizenship in the land of BrainCheese, you will no longer receive your yearly ration...you HAVE been warned. :-)

5. Bah Freakin' Humbug...is it REALLY that time of year again already when I have to brave the annoyances of the general public just to find some silly little gifts for friends and family because it is "tradition"?? Hello??? I don't DO Christmas, I'm NOT Jewish, and I'm hoping no one will notice if I just casually "forget" them this year. People have way too high of expectations for me and MY bar of accomplishment is soooo very low.

6. I discovered "carb loading" for exertion exercise does NOT include a 3 week plan of eating anything one wants before an event. Who knew? I carb loaded for nearly 3 weeks before the half Marathon Walk and now must pay the price...that price being some weight gain (of the nearly 40 pounds I have worked so hard to lose these past 5 months!!!) of about 5 pounds and feeling once again like a sugar junkie. Guess I should have consulted a personal trainer, but why? They probably would have told me I should only "carb load" the night before the event and what fun is there in such strict instruction?!?

7. It's official: I probably WILL live to see the year 2010...I feel like a foreign actor in some kind of strange sci-fi movie. Wasn't it just 1976 last year and we were celebrating our nation's bicentennial?

8. Prediction: Microsoft's BING will never be able to compete with Google..."google" has made it into the urban dictionary as a verb, for gosh sake. I can't imagine EVER saying, "Well, why don't you just Bing it?"...just doesn't sound right. Nice try Bill Gates...

9. Words of Wisdom: Just because it's advertised as an "all you can eat" buffet, doesn't mean you SHOULD. I'm just saying...from personal experience.

10. Shout Out: You know who you are and you rock! You make me smile...aweeeee.

Guest Blogger...

I received an email from Mary Ward, a freelance writer who writes for several blogs. She asked if she could submit an article for BrainCheese over 3 weeks ago...and, being the complete CHEESE HEAD that I am, I am also just now getting around to responding.

My first thought was, "Why would ANYONE who is an actual writer even WANT to submit something to be printed on this little toilet paper piece of the Internet?" I was quickly able to let go of that question (not because it was answered) and realize I have been too preoccupied with life to write anything of my OWN here, so I jumped at the opportunity!!

So, without further ado, I present Mary Ward and her post titled, "How To Keep Fit When You Have Multiple Sclerosis".

For people who have Multiple Sclerosis, keeping physically fit is extremely beneficial. No matter how you are affected by Multiple Sclerosis, there are a number of exercises from which you can benefit. If you stay as physically fit and healthy as possible, many of your symptoms may improve and their effects minimized.

Exercising on a regular basis will help effectively to keep you body working as well as possible to its fullest potential. Each person is affected by Multiple Sclerosis and you know what you like to do. It is vital that you find the exercise routine that suits you best and you know you will enjoy. Some people enjoy playing team sports like baseball and basketball. Other people with Multiple Sclerosis enjoy yoga and Tai Chi. You will benefit from any type of physical movement. You can even stay fit from activities such as cleaning, gardening or taking brief walks. Using your muscles will help keep you fit.

No evidence exists to suggest that exercise has a negative effect on Multiple Sclerosis over time. Nor is there any evidence that exercising will cause a relapse. As a matter of fact, the research on the subject indicates the exact opposite.

Exercise works effectively to improve the overall health of a person with a mild case of Multiple Sclerosis. It helps people with severe cases of Multiple Sclerosis remain as active and mobile as possible. Exercise works effectively to help many people afflicted with Multiple Sclerosis to better manage their symptoms such as bowel and bladder complications, difficulty balancing, muscle stiffness, anxiety, fatigue and depression. Exercise also helps to decrease the chance of heart disease.

In order to find the exercises that meet your particular abilities and needs, you may find physiotherapy quite helpful. A physiotherapist may be able to help you find the exercises to concentrate on a certain part of your body that needs improvement, or aid with management of a particular effect of your Multiple Sclerosis.

A single Multiple Sclerosis exercise that works for all cases just does not exist. Multiple Sclerosis affects different people in many different ways. Therefore, the best exercises will vary from one person to the next. In addition, you may find that the benefits you desire from an exercise routine will change over time.

Several types of exercise work effectively to help keep your body healthy, especially if you are affected by Multiple Sclerosis, such as:

· Aerobics like running, cycling or rowing are a great way to get the blood pumping all throughout the body by using several different muscle groups.

· Strength training exercises, such as lifting or using small weights, work well. You can also use the weight of your own body to strengthen your muscles and bones.

· Stretching is the ideal way to keep your muscles relaxed and supple. Remember to stretch before beginning any aerobic exercise, and use stretching as an exercise all its own.

· Posture exercises work to keep your head, shoulders, knees, feet and pelvis all in proper alignment to reduce the amount of strain on the bones and muscles.

No matter how you are affected by Multiple Sclerosis, you should be able to find an appropriate exercise routine that will make a huge difference in the way live with and manage your condition.

Mary Ward blogs about how to apply to online sonography programs.

Too Close To Home...

It happened just after 10:00PM last night...10:05 to be nearly exact. I had been spending my Hallows in meditation, fasting, and in introspect, when I heard the first volley of gunfire. Seven shots...I counted them. Then, a brief pause followed by 10 more. I know THIS, too, because I counted them (contrary to what the local news is reporting).

The sound of gunfire is NOT all that unfamiliar in the part of Seattle where I live...frankly, I'm not sure it is unfamiliar in MOST areas of any city these days. But THIS particular gunfire was not that far away from my home...within minutes, maybe two, I heard the sounds of multiple sirens racing over the streets and saw the Seattle Police Department zipping up and down the road. There was a frantic quality to the response last night...not that SPD doesn't ALWAYS respond quickly to most calls. But this was no ordinary call of "shots fired".

Last night, a Seattle Police officer was gunned down while sitting in his cruiser less than 1/2 mile from my home. He was killed in the first volley of seven shots I heard. News reports say an unknown gunman simply pulled up along side the police cruiser and opened fire...there was no provocation and no warning. This officer was literally assasinated for no particular reason...other than he was wearing the familiar blue uniform and badge.

I don't personally know the murdered officer...news reports say he was a training officer and was in the middle of a training shift with a rookie only one month on the job. Of course, the news is ALSO reporting a variance in the number of shots fired. I KNOW the exact count...I listened to it, looked at my watch, and waited to hear the sounds of sirens in hopeful response. The sound seemed too far away for me to identify a location for a 911 operator.

The words, "senseless crime", seem like SUCH a completely strange combination of words when trying to make sense of this tragedy. After all, isn't ALL crime senseless? But to literally assasinate a police officer, or ANY human being for that matter, leaves me speechless...and very, very sad.

I work very closely with the Seattle Police force in my "govmet" job...time and time again, these officers have covered MY arse when dealing with a potentially violent mentally ill patient. They go in first, securing the way for ME to enter to do my job. They cover MY back...keeping me safe so that I might ALSO protect the public in the role I have...whether that be protecting a suicidal individual or someone who's mental illness causes them to want to harm others.

It was through my job I learned about the "black stripe" on an officer's badge...an SPD officer kindly told me what the piece of tape meant that he was wearing on his badge when I somewhat dumbly inquired, not knowing the depth of the significance. I was told whenever an officer is killed in the line of duty, the force dons their badges with a black stripe to signify the mourning of the fallen officer...it is their "memorial" of sorts to their commrade.

The killing of the SPD officer last night hits too close to home, not just on a geographical level, but a personal/emotional one as well. I am keenly reminded of the inherent dangers of working as a public servant myself. I am often tasked with making safety decisions in MY job whether or not to request a police escort into a situation or whether I feel "safe" entering with only my work partner and the sole weapon we carry...our brains. The majority of the time, we make the appropriate decision about our safety and the safety of the population we serve. But there is always a margin of possibility we might miscalculate our sense of safety and find ourselves in dangerous situations. These are the risks we take...every day. And EVERY DAY at the end of the day, I am quite thankful yet another has gone by without injury or harm to myself, my colleagues, or the population we serve.

And EVERY DAY, I am always thankful the men and women in blue of the Seattle Police Department are available to me if I need them...willing to "go in" first so that I might safely do my job. I don't have a *badge* to carry in my job...so today, I'm simply putting a black piece of tape across my heart and honoring these courageous officers...

Cheese Curds...

Wow...I have finally rolled back over here to this blog, only to discover I HAVEN'T been here for over a week! What's up with that?!? Hmmm...wish I had a plausible explanation, but all I've got are a few CHEESE CURDS to discuss in my life right now...tidbits...nothing grand happening...just little things!

Since returning home from my GRAND experience in the Canyon named for such, I jumped directly back into my work schedule that is the busiest part of my rotation AND the part that is the most dreaded: DAY SHIFTS!!! Yep...nothing like a little 6:00AM action following a perfect vacation to set the tone for disgruntle. LOL It was a difficult shift just RETURNING back to "real" life from the Canyon let alone the abnormality of my schedule...but, somehow I got through it.

There is LITTLE else to tell or report in my life right now...not even sure THIS qualifies as CHEESE CURDS! I continue to try to keep up my walking, which also takes a good chunk of my time during the week. I've now walked a whopping 200 miles since I began this quest in July...and I'm dayumed proud of myself, too. :-) The farthest I have traveled in one walk time so far is 9 miles, but I am expecting to do 10 next week (the 11, then 12, then 13, and THEN the Seattle Half Marathon Walk!!). Of course, just as my journey times out doors advance into the 3 hour zone, the WEATHER in Seattle has tipped it's hat, dropping significant rain in the Emerald City. Since this is only typical for a return to winter months here, I've been out WALKING in it...can anyone spell "Monsoon"?!?

I'm hoping to make a few short, one or two night trips here and there this fall to visit some nearby friends...beyond that, the only things on my schedule are to work, sleep, eat, repeat. So, enough of MY cheese curds...what fine morsels of life's news do YOU have to share? Hope yours are a bit more "tasty" than mine!~...

Staring Into The Face Of God...

There is nothing more *grand*, mystical, magical, or infinite than to stare into this canyon and know there is a place in this world for all of us...to know there is a far greater plan than I will ever comprehend.

And I'm quite content knowing I will never understand...

Canyon Bound!...

Off to check and see if anyone has shoveled enough dirt in the Grand Canyon to fill 'er up! Be back soon, preciouses...until then, click that link over there for 150 MS Blogs to Suck Your Time and entertain yourselves with a few wonderful blogs!

Embracing Mortality, Living Immortal...

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.

*******

At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...

MS Inspiration?...

I have to admit...there is little that truly inspires me, except for the occasional glorious sunset and right now, the thought of eating a huge piece of chocolate cake (which I don't have available, BUBBIE! Not on the Met-Miracle plan...sigh). But, after spending my Saturday at the local Bike MS Ride here in Washington State, I have found myself *inspired* (not to be confused with perspired or even expired).

Yes, I was once again in attendance at the area "Rah Rah MS Ride"...that's how I usually refer to it. It used to be called the MS 150, but somehow that must have confused the less than logical riders, so it's now just called the Bike MS Ride. The National MS Society sponsors a gazillion of these rides across the United States each year and the Greater Washington MS Society Chapter holds their version of the ride in September every year, rain or shine. I've been to 3 of these events...you may recall, the FIRST two involved an incredible amount of beauching and moaning from the CHEESE as she had somehow found herself in a less than glamorous cabinet position as the "tent czar" for Dr. She Who Will Not Be Named team. It was hella work.

THIS year, I finally came to my senses and decided it was time to give some other poor and undeserving individual the "tent czar" title (and to take care of the Higher Maintenance Dr. SWWNBN!) The planning took too much of my time and energy away from me in the past...and I just thought it was someone else' *turn*. Thank goodness another willing participant took up the cause (and she's on the list for my left kidney, should she ever need it)! So, I was free to simply become what I call "tent bling" at the event this year and actually ENJOY myself for the day (watching other worker ants do what I used to do).

It was a *bootiful* and warm, late summer day here in the typically-raining-Puget-Sound area on Saturday...I had a pleasant hour or so drive to Mount Vernon, Washington, singing my guts out with the car stereo and appearing like a mad woman darting down the freeway. I arrived on site (but not on time) to a warm hug and greeting from our local MS celebrity, Trevis Gleason, over at Every Day Health...it's OK...I've "outted" him before and I think he's used to my shenanigans. :-)

Trevis is one of MANY old friends, who I tend to see only once a year at the Bike MS event (probably because he usually sees ME first and runs to hide!)...the event becomes something of an OLD HOME week (or homecoming week, for those of you not in the know about southern colloquialisms) as I catch up with the news and the lives of several people, all bound together by those two initials: MS.

The Bike MS Ride can be a bit of a downer for me sometimes. Mostly because there are SOOO many people there WITH MS, the disease gets thrown up in my face like a drunken date (wait...I think I was the one who used to throw up on my dates?). Everywhere I look, there's MS. Everything ABOUT the event is MS. Everyone is focused on "riding for a cure" and "fundraising", neither of which I can honestly say (in my humble opinion, of course) will ever happen in my lifetime OR be enough money to assist.

The majority of the riders are those *healthy* people...you know...the one's WITHOUT MS. There are always a percentage of MSer's riding, too...those that are functioning well enough to pedal. There are two-wheeled bikes, tandem bikes, unicycles, three-wheeled bikes, and a sea of riders all out riding for their own, individual reasons. They leave before Dawn's Crack (or shortly after she shows it), heading out to PROVE something, if only for themselves. And eventually, they all trickle back in to base camp...exhausted and physically spent...some barely able to walk (or sit!) once they dismount their wheels.

This is when the tent becomes a handy gathering place...each team is assigned one (tent, that is), and each team carries on their OWN festivities for the remaining hours or minutes of sunlight left in the day. Each team talks about their fundraising, their awards received (for best jerseys, best team spirit, etc.), and everyone catches up with each other...those people who only see each other once a year for this event.

There is an evening "Rah Rah MS" program also, where Trevis is generally a guest speaker (and you DO still owe me two beers, my man, for NOT doing the *sign* during your speech!). Teams gather in a huge crowd and our disease's favorite cheerleader and spokesperson talks about how we have to end the devastation of Multiple Sclerosis NOW (I have to admit, the man CAN give an inspiring speech that usually brings a tear or two to my eyes!). The crowd is filled with energy, even though the majority of the participants are beyond exhaustion from their ride. THEY are there for us...THEY are there for me...THEY are there because it is something THEY can do, if only for a weekend. THEY are there pedaling and riding because it is the one thing THEY CAN do, because THEY either know someone who's life has been affected by MS or they are carrying the disease with them in their own bodies/hearts...those two, simple letters: MS.

I have to admit something to you now...there is nothing more humbling or more INSPIRING than to see 60 - 80 cyclists wearing MY NAME (no, not BrainCheese...the name my mother gave me!) on the back of their riding jersey. That's right. The CHEESE somehow finds her name in the jersey design each year, along with the names of 10 - 20 other MSer's the team rides for (although, now that I've relieved myself of the "tent czar" title, Dr. SWWNBN probably will no longer remember how to SPELL my name in year's to come. LOL). THEY ride for me...THEY ride symbolically for you...wherever YOU are, living with MS.

I returned home late in the evening last night, still singing loudly in my car to Gloria Gayner's "I Will Survive" (but hopefully after dark, looking less like a lunatic), and wearing the fabulous T-shirt I received from the firemen on the team...long story, but maybe one I'll get around to sharing later...suffice it to say, I SLEPT in that T-shirt because I didn't want to take it off!

I crawled into the comfort of my own bed last night as the tears made damp spots on my pillow...but they were the tears of a peaceful kind. They were tears I don't often shed because I have little reason to feel them most of the time or, more often, I make little time to ALLOW them. They were tears of inspiration and *hope* (dare I use that word?). They were tears that wash the soul, leaving only the purest of shine on the heart. MS has brought many things into my life, much of which, I would gladly give BACK to the disease to keep. But, I would never, ever trade the feeling of inspiration I get being in the company of MS on this particular weekend.

THANK YOU to all who ride, wherever you ride, in the name of MS...you are my hope and inspiration...