A Better Life

The purported goal of this post is to recommend a blog by Australian blogger jeisea.  She has several and while they're all wonderful, crps/rsd a better life is great. 

I've known of it for several years, used to include it in my Google Reader, and added it back into the mix today.  

Somewhere along the line, I also added jeisea to the list of people who had pissed me off by getting better, and by adopting and maintaining a good attitude.  Harrumph.

In November 2006, in her second post, jeisea states her tantalizingly simple thesis for the blog:  This blog is an attempt to remind myself about what works for me to help in relieving pain and symptoms.  She might even have put it down in a bolded font, and in blood red. 

Remarkably, she did not stray.  

Remember Dr. Schwartzman of Drexel University fame?  I was so excited at the thought of being Philly bound, and getting to see one of the world's best in the field of CRPS.  It did not work out, mostly because the rarefied air around experts makes them incapable of understanding the limitations of their own impossible schedules!  That's why they have experienced gate-keepers, usually older women with cigarette-ravaged voices and an attitude.  The gate-keepers get to tell all the patients to whom the expert has offered the moon that the moon is made of cheese. 

No matter, because I was fortunate enough to find an expert of my own who had the distinct advantage of being local, and together, we ripped off the Schwartzman Protocol for subanesthetic ketamine infusions, though we had no success.  It was one of the most meaningful times of this life, finding someone willing to assist me in taking a risk.  I'll be forever grateful. 

Anyway, I sometimes forget that Dr. Schwartzman had already given me a great gift, way back in the day.  Back in the constant confusion of I-have-what?  

In a short email exchange, he ended by giving this advice, which, at the time, I just did not get, although I thought I did:  Above all else, stay in life.  "Well, that's easy enough," said my TweedleDee self to my TweedleDum one.

jeisea would have understood!

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Good Monday, Everyone --

I often feel guilty when my writing here mixes my normal nuttiness with the abnormal sort of insanity that goes with living with CRPS/RSD.  The first few years of dealing with CRPS/RSD, I was unable to think clearly.  Period.  Never mind doing any critical thinking (perhaps while relaxing in a bubble bath, sipping on a peaty single malt after an evening at the ballet?).

No, life was Hell.  I went undiagnosed... and that is very common.  It's hard to delve into treatment possibilities when you are constantly sparring with a hospital and a medical culture that has little investment in your health because of its intense need to Cover Its Ass.

I had no clue what CRPS was doing to my brain in those early, intense days.  My pain management was uninspired and ineffective.  I never slept and did not know how to compensate.  Fred was a taut wire;  Emotional explosions were the norm.

No doubt, when I turned to the Internet, I rarely took away the intent or essence that all those authors thought were clearly expressed.  Life was just too nuts, pain too severe, the whole thing too weird.

When I imagine one of My Dear Readers landing here at elle est belle la seine la seine elle est belle, trying to decipher what the heck this blog is all about, anxious only to find that kernel of information about CRPS/RSD that will help, that will explain, that will clarify, and now, right now -- I feel awful.

But since this blog is my primary source of treatment for CRPS pain and now, also for the ongoing yawn of an osteomyelitis crisis, instead of changing my tone, extending a hand, I tend to blurt out the infamous, snarling "whose blog is it, anyway?" -- all the while hoping that I don't really drive anyone away, that a few of the CRPSers out there will stay to play.

Weirdest of all, but easy enough to figure, is my reaction to the CRPSer who is one of those {shiver} extraordinary sick and suffering people.  The kind who start a research foundation in Nantucket with their left hand, write inspirational limericks with their claw of a right hand, all whilst (never while, mind, always whilst) dancing in an off-Broadway Dysmorphic Body Diversity Troupe.

I HATE them.  To be fair, I HATED them before I developed CRPS.  Back when I aspired to live forever in the snootiest of Ivory Towers, I HATED women with glossy, blunt-cut hair who exuded confidence, had read everything, who were born familiar with the right wine pairings and were genetically pre-wired to prepare, cook, and eat an artichoke.

When my circumstances changed, my HATE barely missed a beat.  But the noxious fumes and the skin-ravaging side effects of maliciousness made my aversions and antipathies evident beyond the usual confines of the blood-brain barrier.  Evil is kind of oily and has a faint yellow tint.  It poured from my leaking torn epidermis, clogged up the joint, encouraged inflammation, made thick awful pus.

HATE made me sick in a way that no illness ever could.

The "why" of it was, and is, a bore.  And, really, even though I can lay out the details of how I was wronged and victimized, I can no longer afford to stomp my feet.

I mean, come on!  Have you seen my freaking feet?  The time for the stomping of the feet is over.

At most every point along the way -- the crazy early days before diagnosis, the crazy days after diagnosis, and the crazy, interminable days after realizing no treatment was effective -- I continued to meet the extraordinary CRPSers, usually when they had taken a wrong turn off the Lone Alp Expressway after having had "two warm sakes" with their balance of cold, passive, sweet yin foods  and hot, aggressive, salty yang nutrients.  I attract the Macrobiotic.

They never seem to be impeded by lack of funds, surplus of pain, or a medical system that says (and means) "no."  They never seem embarrassed when they are asking for help.  I used to interpret their mannerisms and behaviors as products of narcissism.  It has been hard, then, to realize that my pathetic, frenetic version of Perfection is the real Ass in the Room.


The tedium of having to apologize to anyone I've mouthed off to, or about whom I've snickered, is too much to contemplate.  I don't "do" tedium, anymore, just as I have never "done" windows.  However, when life puts a member of the extraordinary CRPS crowd in my path now, I try to do better.

I've learned that I am a decent enough sort.  That seems a good place to start, and even if I never ever budge from that baseline, well... that'll be fine.