Taming The Beast

Welcome to "Taming the Beast ~ the Blog". This is my first blog post. If you've already read "Who am I", and "Who is This For", then you know that this blog has been a long time coming. And you may or may not ask yourselves, (but believe me I am asking myself!) "Why now?". The truth is, I must be at least half mad to be doing this now. At many points during the last few years I have been in better shape for this task. Although I have made tremendous headway in the last 13 years since RSD/CRPS came roaring into my life, my health, like most of those with chronic conditions, has waxed and waned. Right now, I think it's safe to say I'm waning.

For the past five years, I've been dealing with ongoing biliary disease on top of RSD/CRPS, and of course, the RSD/CRPS was layered over a lifetime of immune dysfunction. A couple of years ago I traveled to Portland Oregon to a center for less invasive surgeries on high-risk patients to have calcified stones and a few miscellaneous bits of plastic and metal removed from my bile ducts. The surgery was hoped to put an end to this seemingly endless chapter of my life in which the overwhelming pain of full body RSD/CRPS was both eclipsed and magnified by brutal episodes of biliary pain and spasm which were in turn apparently triggering biliary RSD/CRPS. For a good six months it did. I can't tell you how happy I was to be back to "just" full body RSD/CRPS.... and those of you who suffer from this disorder have some idea of what that means.

Nor can I describe my emotions the first time I felt the precursor symptoms to a biliary pain episode occur inside me again when I thought that I had felt those feelings for the last time; I could not believe it. And my poor family, helplessly watching me doubled over and screaming again could not believe it either. What a nightmare! Since then, bouts of biliary pain have become an increasingly primary part of our lives again, along with a range of obtrusive and unexplained abdominal symptoms. As some of you will know, pain begets pain in the dastardly world of RSD/CRPS. So it's been a bit of a snowball rolling down a hill... that is to say a fiery flaming electrical snowball from Hell rolling down a hill of screaming baby bunnies... (ok that's sick, I'm sorry... but as many of my fellow beast tamers would agree, a rather colourful sense of humour can be a great coping skill!)

The struggle to differentiate the many complex symptoms of RSD/CRPS from unrelated and potentially dangerous changes in our health is one that all of us with this disease become familiar with. In this case, the history led us to believe that the biliary disease had not been resolved. So far, imaging and bloodwork do not really support the likelihood of further mechanical blockages. However, the symptoms suggest that this is not "just" RSD/CRPS; it seems that something new is going on (oh joy). And so we are immersed in the terrible world of medical testing and diagnosis again. All the while dealing with the ongoing struggles of RSD/CRPS, complex immune dysfunction and respiratory illness (and all the rest of my body's bag of fun and games), the frankly frightening financial realities of all families of the chronically ill, the challenges of continuing construction and mold remediation of our little old home castle, and the complexities of sharing the life and building an organic farm together with our two young adult children (more on this last, rather more cheerful topic later!).

In any event, this is an absolutely mad time for this undertaking. The challenges of this moment in time are overweening. Will I even be able to follow through? And who am I to advise anyone, when I am struggling so hard... writer, heal thyself! However, the drive to create some meaningful legacy from a lifetime of hurdle jumping has never been greater; some good has to come of all of this! And as those who have seen me though the many years when I could not feed myself, do basic grooming... do anything for myself, let alone pick up a pencil or use a keyboard with both arms locked in continuous clonic spasm; and those who have watched me go from bed-ridden to increasingly able to weight bear, can attest: I have made great, almost unbelievable, progress through the years. I know that I have knowledge and information to share, and I feel increasingly compelled to do so... Now.

So here we are. Onwards and upwards. I hope that this coming year will bring great progress toward the book "Taming the Beast", as well as in my health, our home life, and a number of other ventures (a cookbook for people with various dietary health challenges, resumption of my work as an artist, a website of my artwork, and a multi-levelled joint project with some of my fellow RSD/CRPS angels, just to name a few... I told you I was mad!).

Here's to starting new ventures, even if the challenges are great. Here's to meeting more wonderful people who are also taming beasts of their own. Here's to learning more, giving more, and living more, even in those times when we are feeling oh so mortal. Here's to taming the beast.

Author: Lili Wilde
Date Posted: 2013-08-23   Date Last Edited: 2013-08-29 13:53:45