Monday, August 19, 2013

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*...

Thursday, January 31, 2013

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!!!

Saturday, June 30, 2012

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...

Sunday, March 18, 2012

Saturday, March 03, 2012

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*...


Sunday, February 12, 2012

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...

Monday, October 03, 2011

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...