A Year And A Half Flies By...

June 2014 - my last blog post.  I was complaining about the "new normal" pain in my neck.  Fast forward to March 2016, approximately 20 months into the now present.

My how time flies by!  I'm happy to report my latest January MRI and Multiple Sclerosis check up for 2016 was...shall we say...uneventful.  Yes, still off the DMDs and still stable, aside from some ongoing memory issues and fatigue when I simply don't feel like DOING anything (yes, I DO use the MS card when it's convenient to avoid being labeled just *lazy*).

Dr. She Who Will Not Be Named moved out of state to practice her voodoo elsewhere and I am now seeing Dr. Not As Entertaining But Nice as her replacement.  She read my chart.  She KNOWS the history.  Dr. Not As Entertaining But Nice has agreed to see me for my yearly MS exams anyway.  Neener.

My cervical spine got worse last year. To the point I stopped feeling the outer areas of my forearms and was burning myself on the sides of my oven making Grandma Goldie's Crack Mix.  Oh sure.  It was a great party trick to put out a burning match on my flesh and not flinch.  It's just the scars were starting to look a bit suspicious and I kinda worried just how far down my arms the loss of sensation might go.  Turns out the neurosurgeon DIDN'T think it was a good idea to allow the spinal compression to continue lest I lose bladder and bowel control next.  Yeah, crapping and peeing on oneself at a party is NOT a cool party trick.  So, I opted for the looming surgical spine surgery discussion instead.

In August 2015, I went under the knife and had an ACDF C-4 through C-7 with plating done.  Fancy abbreviations for a $200 grand surgery, but basically I had  the spine of my neck gutted, reamed, straightened, and screwed together.  I am 100% bionic now and no longer fearing the bowel/bladder horror story future.  I DO sometimes worry one of the 8 titanium screws in my neck might come loose or that the mood changes I am experiencing are directly related to the cadaver bone stuck up in there.   But I am otherwise OK.  It was a long haul, 6 weeks post-op in a Miami J collar.  I'm not kidding.  Six long, hot, drug-induced weeks:

Yes, that's me

I finally cleared my six month exam and returned to life as usual in February - neurosurgeon (who also moonlights as a brain surgeon) released me to "resume activities".  OOPS.  I kind of already had been doing that by December.  LOL  Of course my "activities as usual" consist of strenuous activities such as getting out of bed, eating, and changing the TV channel so we were good on agreement.

I never really considered how much *shiz* could go wrong after 50, but in January 2016, I slipped and fell on the ice and have been nursing a torn meniscus in my right knee.  Stuff just falls apart apparently after 50.  Guess it might have been good foresight to have considered LIVING a bit better prior to 50 to promote healthy parts, but too late to turn back time now.  I just had an MRI done on the knee (funny when the tech asks "have you ever had an MRI before?" and I have to advise her "I've had 20 or 30 brain MRIs in my life.  Next question.").  I now have an orthopedic surgeon licking their chops to get in my knee and repair the torn meniscus.  I've also got some sort of cyst in my knee, but I'm guessing that's just bloating from too many carbs.  :-)  He called me and was "surprised" to also see a cyst in there.  Dr. Surprise?  It's me, Braincheese.  Of COURSE there will be archeology finds in this body if you dig deep enough!

So that's kind of a wrap on my medical life.  Still not much to say about Multiple Sclerosis.  I thank the Goddess for THAT lack of discussion with me nearly daily.  I am one of the "lucky ones".  MS roared its ugly head like a lion - then like a lamb, she has wondered off.  I realize she is always there, but I am so grateful MS has stayed quiet in my brain so far.

How's YOUR Multiple Sclerosis?  What's happening in YOUR life?  Inquiring minds want to know...

The New "Normal"...

No, my cervical spine doesn't really look that way on MRI.  The photo has been altered.  It just FEELS that way lately.  And when I say lately, I mean long enough to now feel not temporary...long enough to feel like the "new normal".

People living with Multiple Sclerosis deal with "new normals" every day--whether due to a relapse that doesn't quite remit or the slow, steady progression of a neurological disease that just doesn't always play nice.  "New Normal" can happen on a daily basis with MS or it can creep up and slam you with a "new normal" you never thought possible--like sudden loss of sight, or mobility, or bladder control, or...the list goes on and on. MS teaches us new highs and lows all the time and just how important it is to not take things for granted because a "new normal" may be lurking just around the corner.

If you've continued to follow this blog (it appears there are still 112 of you over there hanging out as *followers* for reasons I have yet to understand!), you have watched me, BrainCheese, move through some tough ups and downs with MS over the years and you recognize for the past 4-5 years, I've been on an "up" cycle.  I haven't had a lot to say here...I've ignored you...I've ignored MS...I moved from a place of discomfort with the disease to a place of inner freedom.  Yay for me and don't be a hater! LOL  And although that movement was initially a struggle to change my mindset, it became easier when the debilitating symptoms (or at least I thought they were) lessened and many of the symptoms became not only manageable, but no longer part of my "normal".  I've actually had moments where I have *forgotten* I have MS because the disease is no longer front and center in my mind and my "normal" has become a more lasting status quo.

During this time of just saying *no* to MS (Nancy Reagan would be so proud), I have become acutely aware of another chronic ailment that is literally a PAIN IN THE NECK (and the rest of my spine) -- Degenerative Disc and Osteoarthritic Disease.  Basically, the discs in my neck/spine and the vertebra are eroding/rotting away and this is creating an abnormal curvature and protrusions into my spinal cord as well as compressing peripheral nerve roots where they exit the cord and travel out to essential limbs and other stuff I like to use, like my bladder.  :-)  I have seen surgeons and neurologists specializing in pain management and they kinda look at me in wonder, surprised I am still walking and not peeing on myself--their eyes also light up with $$ as they see a potential goldmine of "wrongness" just waiting to fall apart before their very eyes and require thousands of dollars and bionic parts just to KEEP me walking and not peeing on myself.  They love to hate me as I continue to not *fall apart fast enough* for them to be able to put their kids through college on my insurance dollars.  And I continue to throw up in their faces (not literally) the fact I believe it is their very *medicine* and past use of mega steroids for the MS that has CAUSED my spine to erode in the first place--we agree to disagree (but I know I'm right. Heehee).

Until recently, I've cruised by thumbing my nose at modern medicine and remain off all MS drugs except symptomatic ones (like muscle relaxers, etc.) ...until the "new normal" came...until I began experiencing a nerve pain/radiculopathy that really IS tapping on my last good nerve.  For the past 4 weeks I am guessing (because I couldn't be bothered to write it down) I have been experiencing that aching/burning/tingling/numbing/deep/unrelenting/zinging/irritating/I can't sleep with this/oh dear god I may slap you because I hurt PAIN in the right side of my neck/shoulder/upper arm and now my forearm.  Yeah, that pretty much describes it.  I don't need a smiley face chart or a number or a scale to rate it -- it EFFING HURTS.  Nuff said.  And, it is my "new normal".

I have tried several home remedies such as anti-inflammatories, heat, ice, stretching, etc., and there is little that is helping calm my nerve(s), so I have resorted to attempting to navigate the neurology world again -- I'm not pleased with my "new normal" because it is interfering with my happiness and trying to bum my voyage.  At the same time, it is what it is and I might as well accept this place I find myself in.  Or, as I said to a colleague the other day, "I'm not complainin', just s'plaining".  I'm trying not to sink to an all time low of *new normal bitchiness".  I'm trying to refrain from slapping cute little kittens out of children's hands because I hurt.  I'm really trying to see the humor in this situation (but would find it oh so much funnier if it was YOU and not ME!) and keep a calm head on my shoulders -- hell, I'm just trying to KEEP my head on my shoulders and attached at the neck!!  Hopefully I will find some relief soon via conventional medicine -- before I end up doing time for crime because I am irritable.

I sure hope when this is all said and done, my neuro team's kids get an excellent college education at a private University!

New Normal - over and out.

Nerve Pain: It's Not For Sissies...

I'm sure you've all seen this type of pain chart:

 

It's the common one found in most doctor's offices and clinics.  When discussing pain, you are asked to "rate your pain" with a number between 1 and 10, with the #10 being the most intense pain you have ever experienced.  It seems pretty simple really when asked to identify YOUR experience of pain compared to any pain you have ever felt in your life and qualify that experience with a number, right?  Yeah...NOT.

 

For those of you have ever experienced NERVE pain, whether associated with MS or any other neurological disease, you know the difficulty of which I speak here in assigning a simple number to something so complex.  Nerve pain does not fit nicely into a number or list of adjective descriptive words.  It's not the same ALL the time and the experience of nerve pain can change with each movement or situation, depending on how our brains or spinal cords are interpreting (or failing to interpret) the sensory experience.

 

A trip to the doctor's office can go something like this:

 

Doctor:  "Describe your pain to me."

Patient:  "Well, it's located here (pointing to a body area), but travels down here(pointing somewhere down the body to a more distal area)."

Doctor:  "Is it a throb, or ache, or sharp pain?"

Patient:  "Yes."

Doctor:  "Well which is it?"

Patient:  "All of them."

Doctor:  "And what pain number would you use to describe your pain?"

Patient:  "All of them."

Doctor:  "What do you mean, all of them?  How intense is your pain right now?"

Patient:  "Well, it's not so much the intensity as much as it is the consistency of the pain."

Doctor:  "Sooo...what number is your pain."

Patient:  "I don't know.  It hurts."

Doctor:  "Is it the worst pain you've ever had in your life?"

Patient:  "Well, no.  Once I was hit in the head with a baseball bat and that hurt so bad I passed out.  If that's what you mean by the worst pain I've ever had in my life?"

Doctor:  "So your pain isn't THAT bad then?

Patient:  "No, I haven't passed out from it if that's what you mean.  But I kind of want to scream sometimes because it's constant and even though it's probably only a grimace on your chart there, it's so agitating and relentless and..."

Doctor:  "Is it interfering with your ability to do normal tasks?  Do you feel weakness or a lack of movement?"

Patient:  "No.  Is it only bad if I have those things, too, because I kind of want to scream sometimes, but I can still move everything and I don't FEEL weak."

Doctor:  "So you are tolerating the pain then?"

Patient:  "Um, well...I guess.  But it really hurts.  No, it's not a 10 on your scale there, but I don't quite know how to describe it to you.  I kind of feel like screaming now."

Doctor:  **Finds number for psych consult** 

 

Because I work in health care, I am very familiar with the use of standardized pain charts.  And yes, they basically suck as a reference guide.  I found this pictorial pain chart online and I think I like it better:

I think THIS pain chart best describes nerve pain -- it qualifies my standard "5 through 7" pain response with such a delightfully distressed/neurotic face, not the bluish/red frowning face of the typical pain chart.  :-)

 

So often in health care settings, patients are asked to qualify and quantify their experience of pain in terms meant to elicit a particular response from a provider.  I've lost count of how many times I've heard patients wishing to gain narcotics describe their pain as "an 11 on a scale of 1 to 10".  Really?  Seriously??  That usually only gets you a one way ticket to being ignored because YOUR pain, your very SPECIAL pain that is so great it's off the pain chart, is crying for attention in such a way it is no longer believable and therefore narcotics won't help you anyway.  And then there are the patients who say they are only experiencing a "5 out of 10" who's blood pressure is elevated, pulse is rapid, they are diaphoretic, and won't or can't move because the pain is so great.  How does their pain compare to someone who is a "10" (or that wonderful "11") and the "10" person is still laughing, conversing, watching TV, and enjoying themselves?

 

I'm not going to be so bold here as to say one of the above patient examples is in more pain than the other.  PAIN IS SUBJECTIVE.  It really can't be qualified on a smiley chart because the smiley chart does not take into consideration the individual's past experiences with pain, their current stressors, the barometric pressure, the recent amount of sleep they have gotten, what they ate for dinner, and a host of a million other variables that affect each of our individual responses to pain.

 

If you've ever had nerve pain and if you ever HAVE been hit in the head with a baseball bat (or frying pan, or 2x4, or...), you know the type of pain a blow to the body generates is quite different than nerve pain.  Baseball bat blows tend to be very intense, blackout crazy intense, throbbing intense, aching intense, sharp intense, and that whole other list of neatly packaged adjectives used to describe pain.  But nerve pain?  Nerve pain is not so simple.  I have personally used the following to describe my nerve pain:  "It's a 5 on a normal pain scale magnified to an 8 or 9 over time because it is constant, agitating, consistently annoying, present even when I sleep, causing me to feel out of control of my body which elicits fear, which creates an emotional pain that further intensifies the physical pain that I think isn't going to go away EVER and, so help me God if you compare your current pain to mine again, I may punch you between the eyes just so you can really have a similar pain experience as mine."

 

I'm just not sure there is a smiley face that best depicts that description of pain...



Finding My Mother's Kitchen...

     So.  It's been a while since I've visited my own blog.  Apparently, there are still some of you who drop by on occasion, usually via Google search for obscure topics with and without Multiple Sclerosis in them!  And, even though MS has taken a far back seat in my life and focus, I do still on occasion have something I think might be worthy of words...with or without MS in them.  :-)

     I have a friend who has recently been diagnosed with breast cancer.  Yeah, I know.  I've ranted more than once over the years about those *Ladies In Pink*( http://brain-cheese.blogspot.com/2007/10/think-pink.html ) and I haven't worked my way through my Public Awareness Campaign Envy (diagnostically called "PACE").  I STILL think MS Awareness pales in comparison to those dayum pink ribbons everywhere and the ENTIRE month of October set aside to honor boobs.  And this post really isn't about breast cancer at all, except to mention it as a key catalyst for change in my life these days.  And golly, I know.  How am I also going to work my mother into this mix??? Well...

     As I said, my dear friend has recently been diagnosed with breast cancer.  She also just lost her husband AND her mother this past year as they crossed behind the Great Veil.  It's been a LOT.  Too much really.  But she is this uber strong, spiritual being who's stride in life and strength in spirit leaves me feeling like a weak, sniveling child in her shadow.  I have so much to learn from her and I am honored she allows my crass, irreverent, silly self in her life.

     When the people in my life are hurting, I always feel a need to DO something.  It's really not altruistic.  I simply feel better when I am doing something for them, therefore it reverts back to being *all about me*.  But sometimes it is hard for me to figure out WHAT to do, especially when it is someone like my friend with the big "C", as she presents such a smooth, exterior surface.  I mean really?  Fart jokes and cancer jokes to make her laugh just seem a bit...I don't know...easy?!  And probably really NOT what she needs to maintain a sense of calm and serenity as she travels down this unknown road called *Patient*.

     This past year I have been dabbling a bit more in cooking.  And when I say "dabbling", I mean I've been doing more than heating up frozen TV dinners or requesting that my order at a restaurant be made a certain way.  I actually even co-created a large garden at another special friend's (Henceforth known as Missy) more rural property this year and we have been enjoying the bounty of our home grown, organic garden produce.  It's been good to get dirty and sweat a bit, in spite of my southern belle attitude that I should be fanned whenever I *glisten*.

     Aaaaaaand, back to the cooking (It is a well traveled road called Digression I find myself on way too often!).  I decided the one thing I could DO for my uber strong, spiritual being friend with the big "C" would be to COOK for her.  To make her some special meals every so often while she is recovering from surgery and chemo and radiation and...the endless patient path.  Sigh.  And here is where my own mother enters the picture.

     Growing up, I don't recall really seeing the FRONT side of my mother all that much, but I do have some decent memories of seeing her back side in the kitchen every day...at the sink, at the stove, at the refrigerator, etc.  My mother was a most excellent cook (can you say root cause of adult eating disorder now kids??) and I think it was in the kitchen that she discovered her true joy.  She was always making something out of nothing and always there was enough food for EVERYONE.  Enough even for the *strays* her daughters would drag home from events!  And our *strays*, aka friends, DID enjoy eating at our house because my mother's food was superb.  She could stick her head in the fridge with only leftovers in containers and, like the miracles of Jesus, turn all of it into a 3 or 4 course meal for 7 or 8 if needed. She didn't drink, so there was no water turned into wine, but I think you can extrapolate the fine imagery and similarity yourself.  :-)

     I didn't care much for cooking or being in the kitchen as a young lass.  I much preferred being outside working in the yard or fields, so any important knowledge my mother "could" have passed on to me about her artful kitchen fell on deaf and stubborn ears.  And it was only after she died that I even began to peruse some of her hand-written recipes and tattered cookbooks.  I even tried a few of her recipes, but they just never turned out quite the way "mom used to make it".  I couldn't figure out what I was doing wrong or if by some sense of punishment for NOT listening as a child, she had deliberate left OUT a key ingredient or cooking time or something.  Something WAS missing and I couldn't figure out what.

     To complicate matters further (at least for me), my uber strong, spiritual being friend with the big "C" is also an organic vegetarian (not a VAGetarian, as I commonly refer to those militant, nonmeat-eating self-righteous females out there who would rather beat me dead with a bloody steak than eat one!) .  This posed a HUGE obstacle for me as my mother was a "meat and potatoes gal" and the majority of her recipes called for one or both and a high dose of animal FAT or bacon.  This opened up an entirely new and scary world of food to me!

     I started relying on the ALL MIGHTY internet and a few trendy healthy cooking websites to safely peek into the organic vegetarian world and menus, like a voyeur watching my nudist neighbors play cards.  It was strange.  It was peculiar.  It was a bit of a thrill.  The recipes had no mention of bacon.  There were vegetable names I'd never heard of (like who knew a *Chick Pea* was the same thing as a *Garbanzo Bean*?!?).  I also started shopping at the local Whole Fools grocery store - the one that has all organic crap, but still sells coffee like heroin to a junky?  I changed the real name of the store here so I don't have an angry group of VAGetarians picketing my home.

     I found myself selecting vegetables and produce with the care of a master gardener...feeling each item for freshness and taking in the smells.  It was/is quite meditative.  The shopping experience has become part of my cooking ritual as much as the preparation of the food.  I also started *blessing* the items I was preparing and thinking about how the food could help keep my uber strong, spiritual being friend with the big "C" healthy and *feed* more than just her flat tummy (I do hate her secretly for that!).  I found myself in THE ZONE.  And it has been a wonderfully peaceful and loving place to be. :-)

     Each dish I have prepared, I have done so with intention and love.  These ingredients are not written down on my new list of growing recipes, but they should be.  These two ingredients are also not written into the pages of my mother's cookbooks or handwritten messages, but they should be.  I have finally discovered they ARE the *missing ingredients* my mother used in EVERY meal she made for us.  It is somewhat sad that I have had to search so long in my life for my mother's spiritual spices that were right under my nose all this time and it is somewhat regretful I didn't take the time or interest as a teen to learn the art of cooking she so humbly created for me each and every day growing up.

     I am not happy my uber strong, spiritual being friend with the big "C" HAS the freakin' cancer.  I am not *happy* about this at all.  But I am so absolutely grateful she has allowed me to walk with her on the path she is on and to allow me to cook for her every now and again!  Because of her cancer, I have found my mother's kitchen.  I am at *home*...

Good Reads Are Hard To Find...

...And I have! Found one that is. Written by my colleague and dear pal, Rojoo, "The Suicide Diversion" is now available on Amazon.com.

You saw it here first! Haha Oprah and your book club...the Cheese beat you to it!!!

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.