Sometimes Late, Sometimes Early... Posts 5 and 6, with several more to be auto-posted...

Well, yesterday was a brutal day; no room at all for posting between a town trip for medical appointments and wicked nerve and thoracic outlet pain that precluded typing. A trip to the "big smoke" for more medical appointments coming up tomorrow, which will likely leave me in pretty rough shape for the next few days, so this post will be something late, and something on time. And if my wrists don't time out on me (I'll be using Dragon but I am still early on in my career as a Dragon Tamer, so there's lots of editing!), I'll try to pre-write my posts for the next few days and have them auto-post as my brilliant Web Tamer son has shown me how to make happen. I'd like to be more "regular", posting each post on the day as I should.... Ah well, life with RSD/CRPS is anything BUT "regular", as my fellow Beast Tamers know so well....

November 5

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 5
Post a photo of something that gives you hope.
Here I am with one of our farm's wee babes. One of my most favourite jobs is snuggling the kids so that they become acclimatized and conditioned to be comfortable with people and make better pets, having the best chance of a home for life if they engage well and can be reciprocally affectionate with their new people. It's a tough job, but someone's got to do it! Baby animals give me hope... for the future, the goodness of life, the continuance, the sweetness and the magick. Life on a farm can be brutal at times, as can life with RSD/CRPS, but the births, the new life, holding the sweet new babes, watching them gambol and play, all these give me hope on my most miserable days.

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 5

Election Day!
Votes are in – you won! If you got elected President, what are the three changes you would make to healthcare?

Hmmm. Well, I am in Canada, so things are a little different here. For one thing I'm Prime Minister, I suppose, not that it matters. Another thing is that Canada once had a medical system to be proud of. One that worked so very well, comparatively speaking... but the last decade has seen it terribly eroded.

I (and many others) believe that the powers that be are trying to force Canada into a privatized health care situation... or realistically, a 2 tier system; to make our free health care so crappy that people who have money willingly pay and those who don't, well, they just have to take what they get, which, if universal health care ends up abolished, will be nothing. So! In my new role as PM, first things first! I will revamp, revitalize, and replenish our previously wonderful government funded health care system to better than it used to be, because health care is a human right and what the heck is government and taxes about if not to ensure that our citizens have their basic needs met and their human rights maintained? 

One of the primary ways to ensure that, I believe, would be to take back much of the control over health care that has become more and more provincially rather than federally managed. The provinces would still have some input into how the dollars are spent, but they would have to live up to a federally mandated standard, and their spending would be reviewed and authourized accordingly. Things that have been privatized in some provinces in recent years, such as cleaning and food services in BC hospitals, would revert to being managed as it used to be, since it has so clearly resulted in a deterioration in quality of service.

Next, I would address the terrible shortage of doctors and health care professionals that we are experiencing. First, I would lower tuition for medical training, drastically, and on a sliding scale according to ability to pay. There would be large, forgivable loans for tuition and living costs, based on a commitment to work in rural communities or other places with the greatest need. I would make sure that payment to health care professionals was equitable on a global scale, which would help prevent the current "brain drain" of our professionals leaving to work in the US and elsewhere. Then I would make it easier for doctors and other health care professionals from around the globe to immigrate and work in the professions in which they were trained. They would need to pass some standardized testing, yes, and perhaps have a period of probation to ensure that their skills were up to snuff, but not be forced to be totally re-trained or to end up working as taxi drivers as sometimes happens, or as GPs when they have specialty training, as is often the case.

Finally, I would include a much wider range of alternative, complementary and preventative care in the funded options. Alternate and complementary care can be very cost effective, and avoids the complications that pharmaceuticals and surgeries so often entail. Preventative care saves dollars in a million ways, a healthy citizenry means a better functioning, happier, more productive people and country. So.... I think I done good!

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November 6

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 6
Post a picture of something you let go because of CRPS/RSD

Above is a detail from "Selkie/Sedna/Surcease", the painting that I finished just the day before the accident that caused the injuries that morphed so very quickly into RSD/CRPS. (Sorry for the hideous watermark, everyone...) This painting would win numerous prizes and awards over the years, including, in, I think, the 2nd year after the accident, a place at the BC Festival of the Arts, where it received much favourable attention. I had a wonderful experience there, networking with other regional artists (despite being on fire with pain) and receiving tantalizing offers of shows, commissions, and collaborations, all of which I had eventually to turn down as my efforts to slay the beast (I wasn't into taming, at that point!) consumed all of my energies. "Selkie/Sedna/Surcease", was also awarded first prize in an International Online Symbolist Art competition. It caught people's eyes and hearts where ever it was shown. It should have been the pivotal piece that created my fully fledged career. But this was not to be.

I have believed that I was meant to be an artist for as long as I can remember; it has been as much a part of me as knowing that I was meant to be a mother, and for just as long. My grandfather was an artist and art teacher, and he was my primary care giver for much of my early years. A quiet man, he and I would paint together for hours, silent and incredibly happy. Painting was a part of me; it became as I matured, my work, my meditation, my joy, my craft and my religion.

At the time of the accident, when I had just completed my Selkie, I was also about 1/3 of the way into my map of the Pender Islands for the Islands in the Salish Sea mapping project. My map was to represent the geography, natural history, human history and current land usage of my island home. It ended up depicting 171  different plant and animal species and was a truly huge undertaking. Because I take my commitments seriously, I was utterly determined to complete it, preferably on time. I also did not dream that anything, including the immobilizing pain I found myself in, could ever, ever make me give up my work.  The moment I was able to hobble out of bed, several weeks after the accident, I was immediately at work on the map.

As a homesteader, and homeschooling mother of twins, I usually woke up at around 5am to squeeze a couple of hours of work in before my day's work as a mother, homesteader, wild-crafter and teacher began. Now I had added incentive for privacy, as I shut my door tight, latched it, and bound my brush to my wrist as my hand could no longer grasp or manipulate it properly. I played quiet music to cover the involuntary sounds of pain that I could not prevent from escaping me, though I occasionally grasped a clean handkerchief between my teeth in an attempt to do so. My son helped me to research the plant and animal species, my daughter helped clean my brushes and equipment, and my husband helped me create a lightbox and other equipment to lessen the work load, and the organizers of the project tried to conceal their obvious frustration as I became weeks and weeks behind schedule. Despite all the help, it was a nightmare. It was a torturous labour of love and determination and excruciating pain. I was half mad with grief and terror and pain the entire time, but I finished it at last.

During all those many weeks, my family had had their first long taste of our life to come; of a mother with too much pain and motor dysfunction to be able to be much use at all. Unable to prepare food, clean the house, garden, canoe, or do any of our usual activities, or even to do much more than the barest of schooling. Of a wife who had suddenly become untouchable, and in some critical ways, unreachable. The pain and sudden, drastic change in ability, with no medical explanation for what was happening to me, had rendered me a stranger to myself, if not to them. I looked back at the weeks of massive deterioration that had happened during that work, and I knew that it had to stop. I couldn't face it, so I told myself I would just take a break to let my injuries heal. But months went by, became years, and the deterioration continued; swift and inexorable, no matter what I did. I gave up one thing after another in an attempt to stop it... we made more and more adjustments to our life in a vain struggle to get what I thought of as "our real life" back. Everything failed. And it was apparent that I was always worse when I tried to use my hands. Every attempt to get back to my work was paid for in pain and dysfunction that made me unavailable to the people I had committed my life to.

When I was finally diagnosed and told that I had RSD, and that it was both degenerative and incurable, and that there were no standard treatments that were not contra-indicated by my pre-existing immune condition, my grief was something I would never wish on any living soul. I did one more agonizing piece; a painting of a woman turning to stone. And then, I quit. I gave up my work, my life's-blood, what I believed to be my reason for being on the planet, because the RSD would not permit me to do it and be present for my family at all. One or the other had to go, and if I was really lucky, it wouldn't be both. So I quit.

For more than a decade I "used to be an artist". That phrase that almost made me vomit every time I forced it out of my mouth...  But as readers of Taming the Beast may know, during that decade I tried to find some tolerated forms of treatment, and I succeeded. With the help of those alternatives, perhaps most crucially, warm water therapies and osteopathic treatment, and at long last with the addition of a tolerated opiate pain medication, I regained use of hands and arms that had been in a chronic dystonic spasm for several years. The twisted, hated, flaming things I had called "the claws" became hands again, opening my world to the internet, to community, and to fellow Beast Tamers who have now become among my dearest loved friends.

Last year, for the first time, I picked up a paintbrush again. I started with repairs to old frames, a little faux finishing, and am now working, painfully slowly and with long breaks between efforts, at regaining myself as an artist. I don't know if it is truly possible, I only know that it is now not truly impossible. I have had to "moderate my expectations" with a will; I try not to disparage what I am now capable of, nor to compare it to my previous work. I am exploring new, more forgiving media.... and we shall see. Keep hope, my brave ones. The things that we have to give up to the Beast may not all be gone forever... Keep hope.

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 6

Say WHAT?!
What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

Oh my... there have been so many! I guess I'll make myself stick to two of my favourites, in the interests of brevity. (Ha ha! This, from your wordy Beast Tamer pal!)

The first I heard while interviewing a woman as a prospective homecare worker. She was quite a "New Age-y" woman; (Don't get me wrong: I've known some wonderful folk who would define themselves as new age... but it was somehow not an appealing quality in this particular lady.) As well, she was one of those people you occasionally meet, who seem to be quite healthy and able, but have a bit of an extra interest in their own bodily functions and the like. What with my life's experience, I try very hard not to judge, as I have so often been misjudged myself. Nonetheless, I had gotten to know her over several years within a small community setting, in which I'd never seen any sign of, nor heard her express having any significant health concern. I had conversely noticed that she was very invested in being a centre of attention, in whatever situation was happening.

After I described the type of help I would need, none of which she seemed daunted by (and all of which was now utterly beyond my abilities), she asked me "Exactly what is wrong with you?"  I told her I had a chronic pain condition, and she said "Oh, well! Don't we all!" I was flummoxed, but said, "Well, I didn't realize that you had chronic pain... I know many people experience some degree of chronic pain, but I have a central nervous system disorder called Reflex Sympathetic Dystrophy, which involves very high level neurological pain, mobility dysfunction, and autonomic changes." Her eyes got very big she looked over at her husband, batted her eyelashes and said "Oh! That must be what I have, don't you think, honey?" Then she turned back to me and said "I mean I think ever so many of us have that, don't you?"

At that point in my RSD/CRPS experience, I was in acute nerve pain in all four limbs, multiple organ systems and the right side of my face. My life had been utterly destroyed, and I had never met or heard of a single soul besides myself with this disorder. I truly did not know what to say, but I didn't hire her.  It's almost funny, now that I know that there really are so very many of us; though I don't actually think that she was among us...

I guess the other time that comes to mind that comes to mind is when, while hospitalized with an acute biliary blockage, I was told by multiple doctors  "RSD? We don't believe in that disorder here." Again I truly did not know how to respond. Not believe in it? Like not believing in Santa Claus? How lovely to have that option... don't you wish you could just decide it didn't exist?

Ah well, I see awareness growing in leaps and bounds. It is still often very frustrating, but change is a-coming, and we are a part of it.

This post has taken me the better part of the day, and I need to be getting ready for my challenging trip over land and over sea to more medical fun and games... If you see auto-posted responses to the next few days challenges, send me a virtual medal! If not, I apologize, and I'll do my best to make them up when I get recovered from the journey. Goodnight, my lovelies, goodnight.

Author: Lili Wilde
Date Posted: 2013-11-06   Date Last Edited: 2013-11-06 21:16:26