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...
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*...
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...
