Sunday, June 01, 2014

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.

Saturday, May 10, 2014

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...


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*...