An absolutely fabulous announcement has been made on the Mast Cell Research fb page! Dr. Afrin, surely the world expert on Systemic Mast Cell Disease, has written a desperately needed book about this complex disease family, and especially on Mast Cell Activation, which is the disease that has first and foremost (beating even RSD/CRPS by a country mile) ruled my life.
Many of my readers will be familiar with the Occam referred to in Dr. Afrin’s book’s title, but for those who are not, here's a quick history. "Occam" refers here to “Occam’s Razor†a philosophical principle stated by the Scholastic philosopher William of Ockham, born in 1285. This philosophy is one of “parsimonyâ€, which is to say that the answer that is the most simple, the least complex, must be the correct answer unless or until proven otherwise. Sounds harmless, right? Not for those of us suffering with rare, or especially rare and complex disease.
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Post Date: 2016-03-09 From Welcome to Taming The Beast
Hello Friends, from your regrettably much-more-absent-than-not fellow Beast Tamer. I've placed the much kinder "regrettably" in place of the word that originally came out; "shamefully"... because that's one of the things I'm trying hard to work on... taking a step back from the shame and guilt that is, for some of us, some of the time, so much a part of being disabled. I do regret that the challenges I am facing with my body have made it impossible for me to continue with my work on Taming the Beast in the way I would like. And I am very distressed that I will not be able to be taking part in anywhere near the degree of CRPS Awareness initiatives that I would like to this month. But shame? No. I know that there should be no shame... for me, or for my fellow beast tamers, if our struggles are even less manageable at this or any other time... it's just another turn of the wheel, just another wave in this great big sea we're trying so hard to swim...
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Post Date: 2015-11-03 From Welcome to Taming The Beast
Well, I had, as they say, the best of intentions... When last I posted, IÂ thought I was "getting my sea legs again", and would be posting shorter, but much more frequent posts, with weekly rather than daily pup-o-grams, and I would be focusing on getting the book in some sort of manageable shape for others to finish if I don't get the chance. OH my.... Progress Report: "FAIL". Yup. I'm so sorry, friends, I truly thought I could get there, and I couldn't... at least, I didn't, and it sure feels like I couldn't. I guess I won't waste your time beating myself up more about it now (I'll save that for later, if I really feel I need to... :P )
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Post Date: 2015-07-04 From Welcome to Taming The Beast
Hello, my friends. I’m sorry for all the time I’ve been away, and now for a post that is, again, perhaps more personal than useful, not to mention longer than I'd planned...again. And yet I know that so many of my readers are dealing with some of the same issues I have been grappling with during these last months. And I know that I've been kind of AWOL, leaving friends online and off to wonder how and what I'm doing. Well, like so many of us, I've been battling this winter... some of these battles are the ongoing hurdles of the “incurableâ€, yet seen through a(n hour)glass darkly, since my diagnosis of Aortic Stenosis with the “6-months to 2 years†lifespan issued so bluntly and irrevocably by my friendly neighbourhood cardiologist. I've always been the kind of person who would rather have the hardest truth than the prettiest lie, but this news was just, so hard.
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Post Date: 2015-02-04 From Welcome to Taming The Beast
Â
Though I originally meant this blog to be entirely a venue for sharing, pre-publishing, some of the information from my on-going project, “Taming the Beast†with those who need it most, it has become at times a somewhat more personal place of expression as well. This is one of those times. Those of my readers who also know me as friends may be aware that I’ve been out of touch for a while, struggling to absorb a recent piece of very bad medical news. I haven’t known what to say, since I hardly know what to think or feel. I’ve been very distressed; I’ve been all over the map…. But I’m going to try to share this news with you now, along with (as I’ve been asked so many times of late without answering) “how things have been goingâ€â€¦ in my usual wordy way. (For those who prefer the Reader’s Digest condensed version of things… mea culpa, I guess.)
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Post Date: 2014-09-26 From Welcome to Taming The Beast
Hello, all my fine fellow Beast Tamers! I am so sorry for being so awol for so long! As you may recall, when last I wrote, I was en route to Portland Providence Medical Center’s special facility for the treatment of cancer and less invasive surgeries on high risk patients, “the Oregon Clinicâ€. This was my second stay at the Clinic and again, I was incredibly well cared for… every possible step was taken to understand my condition(s) and ensure that my special needs were met and a positive outcome achieved. I was treated not only with skill by wonderful professionals with specialized learning and equipment, but also with respect and kindness; even, dare I use a word that is an anathema in the modern world of medicine, with love. And because of the power of my experience and the gratitude and respect I feel for those who cared for me there, I wanted to write about this special place and my time there.
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Post Date: 2014-08-02 From Welcome to Taming The Beast
Recently, on my personal page, I posted a brief note about a pesticide exposure and subsequent anaphylactic reaction I'd experienced. Now, I've had literally hundreds of these... they don't get any easier, but they are a major component of my life and have been for over 30 years. A much loved friend from highschool, who, granted hasn't seen me in the flesh for just about as long told me that until she'd read that post (which wasn't wildly detailed, but was still more than I'd normally say) she really had no idea... and I realized how much I censor my life from even those who I consider pretty close friends. I'm a rather private person, and I've been schooled in the Peter Rabbit's mom's school; that is to say "If you can't say anything nice, don't say anything at all."
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Post Date: 2014-07-26 From Welcome to Taming The Beast
Well, it’s a new year and then some. I’m sorry I’ve been away from the blog so much, but it’s been a doozy already. Since Christmas, I’ve been overwhelmed; neck deep in health challenges (new and exciting along with old and obtrusive), life stresses (major and minor and some particularly painful), research, research, and more and more and more of each. In truth I’ve been way too stressed, too scared, too frantic, too busy just trying to stay afloat…
    (though I'm not sure I looked this cute while making the attempt)
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Post Date: 2014-04-13 From Welcome to Taming The Beast
I wanted to apologize to my readers for my absence (aside from pup-o-grams!) these last weeks. Ever since the holidays, I've been dealing with an extra harsh packload of health and life challenges. In truth, it's been a terrible terrible time, of late. And it's got me down some...
But despite how I've felt through these last few days of struggle, despite the fear and pain and uncertainty that envelope me... well. I guess I'm not beat yet. And for all my fellow Beast Tamers, here's a little inspiration...
Chronic pain, chronic health challenges are a terrible, dragging burden sometimes, but remember, this too shall pass. Winter will become spring, and like the flowers, we too shall rise! Love to you all, my friends!
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Post Date: 2014-02-17 From Welcome to Taming The Beast
UPDATE: Looks like Wego has stopped accepting nominations, but is still accepting endorsements... so if you haven't gotten around to it, or have, but are willing to click that button again, go ahead. I have no idea when they'll be stopping endorsements, I guess. (If you haven't caught all this blather and don't know what I'm talking about, please read the notes below.) Thanks, all!
Here's the link to my Wego nominee page. Just click the purple "Endorse" button under the picture of me (and the handsome furry gentleman in black) on the upper right, and maybe we'll see Taming the Beast win a wego award. Thanks, friends!
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Post Date: 2014-01-02 From Welcome to Taming The Beast
Migraine headaches are a terrible but not uncommon struggle for many... not only those of us with RSD/CRPS, or Systemic Mast Cell Disease, but any immune or central nervous system mediated disorder may suffer this type of pain. Migraines are notoriously unresponsive to pain medications. However, there are drug free alternatives that you can use to prevent them, decrease the intensity of pain or duration of the attack, and sometimes to even stop them in their tracks.
                   Migraines are the most brutal of headache pain, but there is hope.
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Post Date: 2013-12-28 From Welcome to Taming The Beast
This beautiful shining girl is my dear friend Marianne Morris. I first met her 30 years ago and we loved each other from the very first moment. Marianne and I were among the first people in the world known to suffer from massive immune system failure exhibiting as near global allergies and overwhelming, life-threatening chemical sensitivities. After an extended stay in hospital in Toronto, I had been told that I had “20th Century diseaseâ€, “like the Boy in the Plastic Bubble†and that there was little they could do for me. The prognosis was poor; I was expected to die from the near constant anaphylactic reactions I was suffering, but I decided I did not want to die in the hospital, so I left. Marianne had had a very similar experience after being exposed to a chemical spill in the hospital where she worked as a newly certified speech pathologist, although her reactions were primarily central nervous system mediated, and in the place of life threatening anaphylactic laryngeal oedema, she experienced life threatening allergic seizures. I experienced this life altering change at the age of 19, she at 21 years of age. She was some 4 years older than I, and when we met, I knew nothing; she had spent those years since becoming ill in research and in learning every possible way to live with this strange and terrible disease. I would probably never have survived without her.
We have spent much of the intervening years apart, as we were better in different climates, but we always kept contact, and the love between us was a steady light in my life. When I became pregnant with twins in my mid-twenties, and was overwhelmed with fear about how my body would deal with the challenge (though I wanted them so badly), it was Marianne who put her hands on my belly, gave Reiki to me and my babies, and somehow made me believe that everything would be alright. She greeted every struggle, every challenge with nearly unshakeable optimism, her sunny smile and open heart a gift to anyone who came in contact with her, most of whom never knew the hell she experienced every day in just trying to survive. She had the spirit of a child, the heart of an angel, and the courage of a lion. She was the most loving and caring and shining of souls that I have ever known.
Meanwhile, life was not kind to Marianne. Her condition waxed and waned but never stabilized for long. Every basic need to maintain life was a terrible struggle to obtain; even finding tolerated water was a hideous and continuous challenge. We had both had numerous terrible, traumatizing experiences at the hands of both medical “professionals†and government lackeys; she not only fell through all the cracks, but finally refused to accept any more “help†from either of those sources and was determined to be independent, to find a way to survive, and a way to become well… by herself. The people who should and could have helped her never did. She dreamed and dreamed of a home, just a tiny little place to call her own and it never happened; she was homeless for decades, living either in brutally inappropriate, unsafe conditions, or, more often, in her car. Marianne was family to me and my family; we begged her to come and live with us, but after all she had been through she was afraid of losing our love if she was to become “dependantâ€. She wouldn’t have been; it would have been a joy and a privilege and mutually beneficial to have her join our family as a full time member. She sometimes almost made it; we would make plans, begin to set them in place, and each time, something happened to prevent her from coming.
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Post Date: 2013-12-24 From Welcome to Taming The Beast
The winter holidays are a special time... that is to say a special time of challenge for people who live with constant pain. The vast majority of religions and cultures have celebrations around this time of year, and we in the industrialized world live in a culture where between prevailing religions and consumer pressure there is truly no escaping the holiday season. No matter how you wrap it up, this is often a difficult time.
                              If the holidays make you want to howl, you're not alone!
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Post Date: 2013-12-14 From Welcome to Taming The Beast
Hi Everyone! Just finished a great, long, monster of a post, Weathering the Winter Holidays ! This is the second in our series of blog posts from around the world on thematic topics. Mines coming at you from the West Coast of Canada, and I'll be adding links below to the articles by this wonderful community of writers as they become available. This is also a topic I've been planning to address in Taming the Beast (the book) so this amounts to a nearly complete sneak preview from the book itself, as well. It's a long one, because this is such an important topic! So many stresses, so many extra challenges for all of us Beast Tamers... I'd be so pleased to hear your feedback; have I touched on all the aspects you'd like to see addressed? Is there any further resources or concepts you'd like to have me add when it comes to the finished product ? I need your help in making Taming the Beast (the book) into the best reference I possibly can, so don't be shy! Thanks so much, my friends.
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Post Date: 2013-12-14 From Welcome to Taming The Beast
Hello my friends! I am so pleased and touched to have been nominated for a WEGO health activist award, Rookie of the Year! I would be grateful for your support; you can vote for me by going to my WEGO profile page and clicking the purple "Endorse Lili" button under my picture on the upper right. I'd be very happy to win this award; it would really be a high point in a challenging year. Thanks!
Â
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Post Date: 2013-12-11 From Welcome to Taming The Beast
                                  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 dealâ€; 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.
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Post Date: 2013-11-30 From Welcome to Taming The Beast
Old love is the sweetest love… why? Because sharing the struggles of life together makes for a bond that’s hard to break. Value your old friends and loves; they are priceless.
Source: nolabelsnolies.com.
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Post Date: 2013-11-29 From Welcome to Taming The Beast
A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 13
A picture of something you have taught another about having CRPS/RSD
This is an illustration from my article "So you've been diagnosed with RSD and/or CRPS; what now?" which is the article which I've most often been told was really helpful in increasing understanding and reducing the fear of the diagnosis. It seems funny to be linking back to another part of my blog, but there we have it, this is the venue I do much of my work in education. So here it is:
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Post Date: 2013-11-24 From A Day in My Life Photo Challenge for 30 Days of RS
Musings on the nature of Love, and Friendship, and Distance...
Today's post is part of a group of posts by international bloggers in chronic pain. We all agreed to post on the same day on a given topic; our distance friendships with people we had met through online health networks. As you may have guessed by my absence, I have been struggling with the typical, winter – is – coming pain flare that has taken all the strength and time I had to deal with. This topic however, is so important to me, that I feel I absolutely must address it.
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Post Date: 2013-11-22 From Welcome to Taming The Beast
Now what was that road to the hot place paved with? Oh yeah... well, my intentions were true. And I was pretty pleased with myself for managing to set up an auto-post for Day 7 of my November Challenge posts, and fully expecting to be posting on Day 8. But I have a Beast or two that sometimes interfere. A trip by ferry to a specialist meant a pulp mill pollution exposure; Beast#1 (Immune Dysfunction, aka suspected Mast Cell Disease) jumps to the fore. Anaphylaxis (life threatening systemic allergic reaction) necessitates treatment with epinepherine (aka synthetic adrenaline), creating massive flare up of pain and central nervous system dysfunction courtesy of Beast #2, RSD/CRPS. Three days later, here we are, and I am finally sitting down to do a "bulk bin" post of the Challenges for November 8, 9, 10 & 11. Well, at least I know that my readers and fellow Beast Tamers understand what it's like to never know when their Beasts may strike.... So here we go;
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Post Date: 2013-11-11 From Welcome to Taming The Beast
A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 07 - A picture of who you look to as inspiration to keep fighting this disease even when you want to give up.
OK. After giving the last two days my all, I’m cheating again, here. I have 2 multi-answers for this, and I’m not going to post a picture!
- Â My family; my husband and young adult daughter and son. Because they want me here and they give up so much and do so much to make it possible that I would be a rat and a half to give up. And I already posted a beautiful pic of them for Day 2.
- My RSD/CRPS family. First and foremost, my besties, my “covenâ€, my cohorts in working towards RSD/CRPS Art Spirit, and all of the other incredible, amazing women and men who are fighting to stay here and stay strong despite being burdened with the Beast. You all fill me with awe and admiration at times; you make me want to inspire you in return. We hold each other up in the bad times, and celebrate the good times when they come… moment by moment. I wanted badly to post a “quilt†of fb pics, but didn’t have time to ask permission and didn’t feel it would be right not to… so, no pic. Ahhhh well, we already know I have a hard time not breakin’ the rules sometimes…. Sorry!
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Post Date: 2013-11-07 From Welcome to Taming The Beast
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....
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Post Date: 2013-11-06 From Welcome to Taming The Beast
A Picture of your favorite quote that helps you get by and why -
Wow, I must be in a contrary mood... I can't quite address either of today's challenges as I believe I was meant to....
         Mistress Mary, Quite Contrary... oh well, at least I'm not gardening heads!
For one thing, I can no more choose 1 favourite quote than 1 favourite animal.... and those who know me know how much I mean that. Also, there's the thing of "a picture of your favorite quote".... When I was showing my work as an artist I was often irritated by the request for words to explain my paintings... I felt that "if I could've said it in words, I would have". This challenge makes me feel the opposite. I've looked through my favourite quotes and I can't make a one of them adequately translate into a visual image.
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Post Date: 2013-11-04 From A Day in My Life Photo Challenge for 30 Days of RS
RSD/CRPS Awareness Month &
Health Blogger Challenge
Posts for November 1, 2 & 3!
So here we go! It's a late start to these November challenges, but better late than never, and after all, Sunday is for catching up, sometimes...
November 1
A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 1
Here's me. This is meant to be a pic of me today, and in some ways, it truly is. Though I do hope and believe that I have changed and grown through the experiences of my life, I also believe that at the core of me, I am still precisely who I was at age 2. Ironically, the one of the only photos I have of me at that age is this one, in which I am still wearing the bracelet from my most recent hospital admission and being tormented (in this case by a sibling). Although medical experiences and a certain degree of torment have been all too common elements of my life, this is not quite what I mean...
I have, I am told, an abnormally acute memory; I remember quite clearly how I felt at that age. I believed in the basic goodness of people; in fact I believed that people were almost as nice as animals! I believed that apples should be crunchy and preferably green. I believed it was important to be kind to both people and animals, I believed in fairness, that hurt creatures should be cared for, that crayons, kaleidoscopes, etch-a-sketch, most rocks, all twisty, curvy sticks and seashells of any description contained the most powerful magick, and I believed quite equally (fairly enough) in Santa Clause, my grandparents, the angels and the fae.
So though some days, as a grown up, some of my beliefs have been tempered,(for example, I frequently wonder just how close to "as nice as animals" people actually manage to get, as a species), most of my core beliefs remain. So, this is me. I have RSD. I look forward to getting to know you.
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Post Date: 2013-11-03 From Welcome to Taming The Beast
November's Challenges
A massive howling "November is Here, you puny mortals!" windstorm has me laying pretty low today, and I'm feeling somewhat overwhelmed. But I thought I'd best check in with my fellow beast tamers.
November's Storm... looks a lot like an RSD/CRPS flare!
I've been struggling with competing priorities... Here on my family's farm we are busy with the challenges of autumn; canning and freezing food for the winter, getting the winter green house plantings estabilished, putting the gardens to bed and preparing the animals for the winter. On the health front, it's both business as usual for an RSD/CRPS old-timer, but also working with specialists towards diagnosis and treatment of Mastocytosis or other Mast Cell Activation Disease, which is probably what has caused my lifetime struggle with anaphylaxis, drug and chemical sensitivity, many-spendored allergic disease and challenges in treating the RSD/CRPS... and trying to get the paperwork in place for another trip to the Portland Centre for Less Invasive Surgeries on High Risk Patients in the spring, and a trip to a geneticist for clarification on exactly which type of Elhers Danlos collegen disorder I have as it may impact the upcoming abdominal surgery. So an overwhelmingly busy time.
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Post Date: 2013-11-02 From Welcome to Taming The Beast
Hi folks! Here it is, post number 1 in the 10 part series,
Taming the Beast's Top 10 Alternative Techniques for RSD/CRPS & other chronic pain conditions! (I admit that short titles (or short blog posts!) don't seem to be my long suit; Ah well... )
I've ordered my list not ordered according to effectiveness, because that's different for each person, but by accessibility. Starting with those you can research easily and at least get a good start on yourself at home with no cost (though having a skilled teacher or trained professional to help can be wonderful and transformative), the middle ones have some unavoidable costs attached (for foods, sups, herbs, remedies) though you can do the research and work without a practitioner (though again, a teacher or practitioner is even better if you can afford it), the last 2 absolutely do require a practitioner.
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Post Date: 2013-10-10 From Welcome to Taming The Beast
Those of us with RSD/CRPS, and in fact anyone with unremitting pain, will sometimes need to calm down a CNS that's misfiring; sending repeated messages of "Danger! Danger! Fight or flight immanent!!!!" throughout the body. Those messages, caused by the pain we are experiencing, flood our systems with adrenaline, nor-adrenaline, cortisol, and a plethora of stress hormones that are a great help when running from a tiger, but not only not so helpful for chronic pain, but sure to increase it, and all the other dysautonomias that go with it. We just need to slow everything down. So remember all we know about creative visualization. What would it be like to be something slow... something calm, gentle, unafraid, full of peace and love? Well, if you know sloths like I now know sloths, you'll know that sloths are the epitome of all of these characteristics. Just look at the gentle smiles on those contented, loving creatures!
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Post Date: 2013-10-10 From Creative Visualization/Guided Imagery Scripts
Picture yourself on a gorgeous desert island all your own; the blues and white of the sea and sky… a comfy hammock or reclining lounge chair, the sounds of the surf, the call of the gulls, the warmth of the sun, the gentlest of breezes (if that’s ok for your particular beast), a cool fruity drink, and thou…. Any variation that fills you with comfort and ease is AOK.
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Post Date: 2013-10-04 From Creative Visualization/Guided Imagery Scripts
This one can be flying, skiing, snowboarding, swimming or deep sea diving, but it involves picturing yourself shooming around as free as a bird, as happy as a dolphin at play. Whether slalom-ing down the snowy slopes, twisting effortlessly amongst the other denizens of the coral reef, or soaring with the eagles, the important things are the details to make it real and the sense of freedom and bodily ease; the expansive joy of (utterly pain free) movement.
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Post Date: 2013-10-04 From Creative Visualization/Guided Imagery Scripts
This is a nice one for city dwellers who may have a hard time getting enough greenery. I highly recommend doing an internet search for images to help you choose your place, but close your eyes and sit yourself down by your own private woodland pond. Again, go for the details of your environment. Think of all that life, busy bees, butterflies, fish, frogs, dragonflies and fireflies, birds of every description from the majestic crane to the perky cock robin to the silent flying mystery of the great horned owl… and there you are, the only one who’s totally still, utterly at rest… I like to add a few of the fae to the mix; wood sprites, dryads, naiads, and gnomes, but I’ll leave you to people your pond as you will. Don’t forget the plants! Water lilies, cat-tails, ferns and mosses, birch trees and willows, and towering cedars… whatever environment you choose, make it real, make it your own, and make it when you need it and times in between when it will help your CNS stay stable and give you more time with less emergency maintenance needed.
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Post Date: 2013-10-04 From Creative Visualization/Guided Imagery Scripts
The diagnosis of any "incurable" disease, let alone one as life altering as RSD/CRPS is a blow, but it needn't be a death blow. In my work as an administrator in an RSD/CRPS support group, and a participant in several others, I so often "see" the newly diagnosed, reeling under the force of that blow, wondering "what now"?
I so vividly remember finally being diagnosed myself after 3 long, unbearable years. First the relief of "it's not in my head, I'm not going insane", then the terrible realization of what they are (and aren't) saying. This is incurable. This is forever. This will not go away and it may spread. And the more you learn, the more terrible the information, which piles up and up and up into a wall of total terror...
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Post Date: 2013-08-27 From Welcome to 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.
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Post Date: 2013-08-23 From Welcome to Taming The Beast
