"You've Got to Know When to Hold 'Em..."

                                   Epilogue to the Challenges of November                                          & the Continuing Sto-ory of the Challenges in a Life.

So here we are. It’s the end of this month of RSD/CRPS Awareness, November. I entered into these 2 awareness challenges in an attitude of “Why not? I can do this!” and truly, I gave it my all… until I got blown out of the waters, but good! My wise daughter and caregiver, Naomi, had warned me from the get go that these challenges could be more than a “full meal deal”; had even coerced from me a promise not to be too hard on myself if I wasn’t able to follow through as well as I’d like. Oh, prescient offspring!! It really did turn out to be more than I could chew.

                                  ... a great big towering pile of “too muchness” ...

And this; Acceptance of our Limitations (note the capitol letters?), is one of the primary lessons that must be learned by every single solitary soul with any chronic illness… especially intractable pain… especially RSD/CRPS with its many splendoured bag of tricks. Like the song says “You’ve got to know when to hold ‘em, know when to fold ‘em, know when to walk away, know when to run…” you’ve got to know when to “ back away from the….” (whatever is too much for your body to deal with). It’s rarely one thing. It’s much more often a great big towering pile of “too muchness”, culminating in a single hair that could break the back of any burdened Beast Tamer. For the sake of understanding a month in the life of someone with RSD/CRPS, Immune Dysfunction (AKA Mastocytosis/Mast Cell Activation Disease) and a tangle of other chronic health challenges, let’s take a look at what exactly got in the way of me completing the tasks I had so truly wanted to accomplish…

Hmmm. Let’s see. Now to start with, it’s November. November is a tricky month for those of us Beast Tamers in the northern hemisphere. It’s the end of autumn, the first real precursor of winter, and it sometimes slams in hard. On the west coast of Canada, it is a time of storms, a time of wind. As for many with RSD/CRPS, wind is a major initiator of pain flares for me. And flare I have; off and on and on and on again throughout the month. From multiple major coastal wind storms and gales to drenching rain (predictable for November on the coast) to a very unseasonable (for our area) sudden serious cold snap and hard frost, the weather truly was one long, sickening, spinning Tilt-A-Whirl of Beastly “fun”.

              (Erg. I feel motion-sick just looking at this thing... if you do too, I'm sorry!)

Add to that backdrop, a series of rather unfortunate events: First; the shop where we purchase the anti-oxidant rich rooibos tea that is such a big (and usually rather pleasant!) part of my daily life got new neighbours; a fish monger! Fish, like peanuts, corn, and a few other common anaphylaxis triggers, is one of those potent toxins (for sensitive people) that has protein molecules just the right size for absorption into the human blood stream via the mucous membrane, or so I’ve been given to understand when asking the pros to explain how a person can have anaphylaxis to just walking past a fish & chips shop and catching a whiff of seafood… in this case, the smell of the fish shop came head to head with the tea shop’s merchandise… and won. Seeing as I ended up injecting myself with epinephrine to try to deter my rapidly swelling face, throat, and lips and my rapidly dropping blood pressure… I think maybe the loser in the equation just might have been me.

Epinephrine (aka synthetic adrenaline) is an absolutely vital, life-saving medication for anaphylaxis sufferers; it is hell on wheels for sufferers of RSD/CRPS. A massive systemic stimulant, it is just what the doctor didn’t order… for a central nervous system already wired to overkill on the fight or flight path. When anaphylaxis strikes, it is a matter of life or death; you take the epi. But the consequences are never pretty… just pretty darned hard hard hard. Every symptom of RSD/CRPS (not the least of which being the pain) is cranked to the max, for days or weeks to come. And in this month of November, I had to take the epinephrine 6, count ‘em, 6 times. 1 fish contaminated tea sip, 3 pulp mill pollution exposures (1 which was bi-phasic), 1 mold reaction… and a partridge in a pear tree…

                                   ( errrm….. no. No. that’s really not what I meant…. )

All joking aside, it was a terribly brutal month for my immune system, and for each and every aspect of the RSD/CRPS. Add to that a great deal of personal stress; news of the mental and physical health breakdown and probable impending death of one of my oldest friends, the realization that we are almost certainly going to have to move (one of the top stresses on any stress chart even for healthy people for whom that concept means nowhere near the trauma, upheaval, or intense physical risks and pain that it absolutely will for such as myself), multiple medical tests and procedures, the dangerous task of testing multiple new medications for tolerability, multiple family health concerns (including some new and very worrisome ones), ongoing critical financial duress, planning for the likelihood of another trip to Portland for multiple surgical procedures in the coming months, a re-assessment process (never fun) for badly needed government medical equipment funding, the 3 ring circus of peri-menopausal-misery-meets-fibroid-masses and, as the cherry on the top, an assortment of technological and mechanical melt downs. November’s been a real Raging Beast’s grab bag of physical, mental and emotional stressors. Yee….. Haw.

Well. The long and short of that “not so pretty picture”, is that, among a host of other outcomes we’ll not detail here (since I don’t want the typing of this post, even with my pet Dragon’s help, to finish me off), I was not only late with most of the posts I managed, but I was not, in fact, able to address and create posts for each and every day of the 2 November Awareness Challenges that I had hoped to do completely, without fail. I managed 14 of each, counting this one… which is juuuuust under ½ of what I set out to do. When seen through the light of what I’ve just written, hey, I’d almost call that a win. (Oh! Now there’s a nice example of *re-framing* ; a dandy cognitive trick that we’ll be talking about in the upcoming Part 2 of Taming the Beast’s Top 10 Alternative Techniques for RSD/CRPS and other Chronic Pain Conditions!)                   (Reframing can work great! Though it’s not always comfortable at first…)

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 Aaanyhow. Here’s the last of the challenges of November (I hope! The day’s not over yet…)

wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 13

Nov. 29 Toot that Horn! “ Want to hear a secret? You’re awesome. (It’s actually not even really a secret). This is going to be hard for you, O Modest One, but you gotta give yourself props today! Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!”

                            (Sheesh, blowing your own horn can be pretty hard work!)

Since I was mainly going to go for only the last day, it would have been easy to skip this one. I decided not to, especially because it was so tempting to do so… self-compliments! Is there anything more challenging? Being nice to myself is a long term struggle for me. I am told that I am sometimes downright mean (to me)… when I really am a fair, loving, patient, compassionate, kind and caring person in my interactions with others. Hey !! I did it ! Does that count?? We-elll… maybe that would be a wee bit of a cop out to call that three things, since those adjectives are practically thesaurus pals, they are so akin. Howzabout I call that number 1? OK? OK.

  1. I am a fair, loving, patient, compassionate, kind and caring person in my interactions with others.
  2. I work hard. I work hard to keep my word, to follow through on any commitment I make, and to do my very best work no matter what the task I am engaged in.
  3. I am a person of integrity. I am committed to honesty, to clarity, to truth, to being truthful with others, and most especially to being truthful to myself. Because of that commitment, I am willing to live an examined life; to constantly check in with myself… to examine, be honest about and accept responsibility for my motives, my behavior, my actions and inactions. It’s not always an easy path, to see clearly your own weaknesses and foibles, but it’s the path that makes me feel the strongest and the truest. I may not have the body of a superhero (see below), but I strive to have the spirit…

(There! That wasn’t so hard, now, was it? We-elll… only a little wee bitty bit!)

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Nov. 30 That’s a Wrap! “Nominate someone for a Health Activist Award and write a post about why you nominated them!”

Hero Award

Ha! Beat you to the finish line on this one, wego! I already nominated several of the most fabulouso bloggers, and I did it aaages ago! Here’s my nominations, and the reasons why:

I nominated Elle and the Autognome http://elleandtheautognome.wordpress.com/ for Best in Show, blog.

Here's why, as I told wego when I nominated her: "Elle and the Autognome is The Best resource for not only living with severe chronic pain and multiple disabilities and dysautonomias, but living happily despite these challenges. She has the most positive outlook, is consistently not only smart and savvy, but loving and light of heart. Her blog is a real "jar of joy"! (See her blog for that great idea...) In the words of Elle; "silliness rocks!" Enjoying her blog with a cuppo tea makes me feel less alone while living with a very isolating and challenging condition. She is The Best!"

I nominated Isy Aweigh, of Biowizardry http://biowizardry.blogspot.ca/  for for Geek Health Activist of the Year.

Here's my reasoning: " Isy is an RN as well as a patient, and it shows! She is brilliant; takes the complex biochemical realities of chronic neurological pain and not only makes them comprehensible, but gives fellow patients practical management tips including potent nutritional tools, attitudinal advice, resource and energy management, and how to communicate best with health care professionals, some of whom may be unfamiliar with your rare condition or blinded by arrogance and ignorance. With thought provoking commentary on the latest research and incredible insight into human nature, Isy is the Geek Health Activist we all want on our side. Wonderful!"

And now here's the embarrassing part. There were several other nominations I wanted to make, and I don't know if I actually got there or not because this month has been such a struggle. I hope I have, but I can't find my "paper trail"... And I am actually too tired now. Speaking of knowing when to hold them, I've just got to finish this last wee bit and conk out for a bit. This leafy lady's a-wilting, I'm afraid. I hope to get back to nominating and voting tomorrow.

I encourage you to do the same! There are some truly wonderful bloggers out there... I urge you to vote for my gals above, and to check out and perhaps nominate or vote for the recommended blogs on my sidebar (yes, those would be my other nominees.)

I am happy to say that I myself have been nominated as Rookie of the Year!! I am so honoured! And if you've been enjoying my blog I'd be very happy if you'd vote for me while you're there!

Here's the link for nominations: http://awards.wegohealth.com/

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And the Grand Finale,

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 30

A picture of you as a superhero:                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             The picture below is meant to be (and is going to miraculously change, sometime in the next few days into) a screenshot of “Old Me” from the wonderful Bethesda RPG and supreme pain distraction world of Oblivion. Despite the fact that the reason I can't post this picture tonight is that Oblivion crashed (grrr) and with my technologically advanced son out dancing the night away I can't get it back, I still must give Bethesda, the makers of this game, a plug here. And not because they'll put a horse's head in my bed if I don't but because I have gotten so much pain distraction help from their products.

The worlds (the ones I’ve experienced anyways, which are Morrowind, Oblivion and Skyrim, all part of the Elder  Scrolls series) are truly unique amongst roll playing games. They are meant to be played mainly in first person (you are looking out through your character’s eyes, not watching some little doll have adventures), in a massive, completely immersive semi-medieval fantasy world with a seemingly infinite opportunity to explore and play your own way. Though there are lots of monster battling opportunities, and yes, you could allow yourself to be led into a life of crime in fairly short order, you could also do as I have done with multiple characters and lead a life of peace, herbalism and heroism, in which you use your magical powers to help others and turn the other cheek. I frequently go about either flying or invisible so as to avoid having to do battle with “innocent” wolves, trolls, daedras, atronachs, elementals and other “pups”.

This character is basically me, but with a couple of important differences; 1) She’s pretty darned super-duper human. Physical limitations? How do you spell “Nope, nary a one!”? My son, Nick the super-modder (that’s one who makes computery things work though the mysteries of coding) made sure that would be truly so. Unlike this very mortal coil, in the worlds of Bethesda, I’m practically unkillable. Able to leap tall Telvani mushroom houses in a single bound? Of course! Faster than a speeding Cliff Racer? Obviously!  And 2) She’s old! Quite a bit older than “real”me. “Why?” you may ask… Well, to help me get out of my very persistent dreams of my pre-RSD/CRPS-past, and to give myself an image of hope…. to remind myself that a future is possible, and that it might even be good… that I might not only still be “walkin’ and talkin’,” (in the words of Captain Mal), when I’m older (and hopefully wiser), but I might actually be more, rather than less able…. Might even be…. Unhunh, you know it…. A SuperHero!!!

Ok, that's right, it's not me, just a place filler... the only old lady superhero I was able to find in a rather exhaustive search... (what's with that, oh great and mighty internet?) You'll see "Old Me" as soon (sometime in the next 48 hours, I hope) as Nick is able to get to bringing her back to life, so stay tuned for the transformation if you're interested!

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So, before I say goodnight, let’s recap, because the core of all this blather is important. Accept our limitations. Do what we can, be grateful for what we are able to do, and forgive ourselves the rest. Know when to say no, and know when to say no more right now. (Yes, I know all this is hard, but do it!) Acknowledge the very great challenges we face, and celebrate our successes in the face of all that. When the experience is harsh, don’t get harsh on ourselves; try to change the perspective. (More on that coming soon!) Acknowledge our gifts as well as our struggles, acknowledge the gifts of others (how about heading over to wego to vote for some of the special bloggers in your life?), see and celebrate the superhero in us all (including ourselves)! Yup. Sounds like a plan.

Goodnight, all. May your pain recede for the resting hours, and give those sheep a chance to dance!


Author: Lili Wilde
Date Posted: 2013-11-30   Date Last Edited: 2013-11-30 20:59:56

Comments (1)

Topic: "You've Got to Know When to Hold 'Em..." - Taming The Beast
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Elle and the Auto Gnome (UK) says...
Ah, good ole Bert and Ernie. watching Ernie relentless cheerfulness has just given me a sudden insight to what it must be like to have to live with me, haaaaa! Poor Magic Dude! By the way, I only managed 9 days and then bowed out to recharge my brain. Your 14 is beyond awesome, and I have no idea how you managed it in the midst of all that has happened to you this month. You really are a superhero! I looove the story behind that superhero piccy. I searched out of interest and found a story in ... Read More
1st December 2013 4:09am
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