Here we go... "Fashionably Late"... again.

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;

November 8

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 8   A picture of how do you cope with RSD flare up-

Again I am being difficult! I don’t want to post the same picture that I posted for Day 3, but my coping tools don’t change much at all with the severity of the flare; only the quantities and proportions of my different tools and techniques alter in response to an emergency.  What does change during emergencies is the amount of help I need. In part this is illusory, as I have an incredibly supportive family (who also number among my best of friends) who helps me so much in the day to day. But I do try to monitor and treat the ever-fluctuating symptoms of my Beast on my own as much as possible throughout my days and nights.

However, when emergency strikes, such as a major RSD flare; when I am doubled over and making involuntary noises as the pain brings me to my (metaphorical) knees... that's when my support team swing into action. Whoever is home at the time stops what they are doing, gets me into as safe and comfortable position as possible, makes sure I have access to whatever appropriate emergency meds, homeopathics, herbal tinctures etc. that I need, and starts in on one of our specific emergency acupressure routines. They have gotten me through my darkest hours, again and again, and I am so grateful. So.... how do I cope with RSD flares? With a little help from my friends!

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 8 Favorite Fridays  Make a list of 3 favorite quotes.

Goodness! I think next year perhaps I should do only one of these two wonderful initiatives, because there's a fair amount of overlap... I've posted a big ream of quotes that inspire me for Day 4 of the Photo Challenge.... but I decided that rather than decline I would go quote shopping! Even more fun than window shopping, since you get to keep what you find.  ;) Of course, being the turrible rule breaker that I seem to be right now, I've gone *somewhat* over the limit of 3... but read together, they seem so complete... more than the sum of their parts; like poetry. So here you have them:

Quotes ~ Part 2

- The only creatures that are evolved enough to convey pure love are dogs and infants.  Johnny Depp

- Adults people never understand anything for themselves, and it is tiresome for children to be always and forever explaining things to them.Antoine de Saint-Exupery

- There is nothing more thrilling in this world, I think, than having a child that is yours, and yet is mysteriously a stranger.Agatha Christie

- It's all kinds of these profound things crashing on you when your child arrives into the world. It's like you've met your reason to live. Johnny Depp

- You are responsible, forever, for what you have tamed. You are responsible for your rose. Antoine de Saint-Exupery

- I feel that there is nothing more truly artistic than to love people.Vincent Van Gogh

 - It is the supreme art of the teacher to awaken joy in creative expression and knowledge. Albert Einstein

- Great things are done by a series of small things brought together.Vincent Van Gogh

- I saw the angel in the marble and carved until I set him free. Michelangelo

- I dream of painting and then I paint my dream. Vincent Van Gogh

- The pen is mightier than the sword if the sword is very short, and the pen is very sharp. Terry Pratchett

- Laughter is the tonic, the relief, the surcease for pain. Charlie Chaplin

- In spite of everything I shall rise again: I will take up my pencil, which I have forsaken in my great discouragement, and I will go on with my drawing.Vincent Van Gogh

- I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing.Agatha Christie

- As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. Vincent Van Gogh

- Courage is found in unlikely places. J. R. R. Tolkien

- Love and compassion are necessities, not luxuries. Without them humanity cannot survive.  Dalai Lama

- The final forming of a person's character lies in their own hands.  Anne Frank

- The best and most beautiful things in the world cannot be seen or even touched; they must be felt with the heart.  Hellen Keller

 - Look deep into nature, and then you will understand everything better.Albert Einstein

 - It is only with the heart that one can see rightly; what is essential is invisible to the eye. Antoine de Saint-Exupery

 - For my part I know nothing with any certainty, but the sight of the stars makes me dream. Vincent Van Gogh

- For small creatures such as we, the vastness is bearable only through love.Carl Sagan 

~


November 9

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 9

Day 09 - A picture of yourself doing something that you might not think you can do whether it's walking on the beach jogging or even cooking dinner. 

Is this cheating? Our camera is awol and the cel phone picture quality is poor, so I am using my blog header as a representation of... blogging, and writing my book! As I've mentioned other places in the blog, I lost all use of my hands and arms for a large chunk of the last 14 years. During much of that time I required help for the most basic personal care; use of computer keyboard was not in the picture at all. Even more so, the mental organization and clarity of thought required for writing at all, let alone such a massive undertaking as Taming the Beast was utterly beyond even my very active imagination during many of the years that I had no tolerated pharmaceutical treatments and had not yet completed (not that I consider it "completed" yet; I expect the learning to continue!) my enforced education in alternatives. Untreated pain is a brain killer! So, Taming the Beast is something that I never thought would be within my reach. I am so very, very grateful. 

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 9

Just Admit It
It’s taboo, write about something that people do but don’t like to talk about or won’t admit to doing. Don’t worry, we won’t tell anyone!

Ok. This challenge has me beat, sort of... As far as I am concerned, when it comes to health, to dealing with RSD/CRPS or any other chronic pain syndrome, there is no taboo. This type of disorder impacts every facet of our life, every part of our psyches. I don't care if it's something not ordinarily talked about in polite society...  if it's toileting issues, negative emotions, sexuality, suicidal ideation... you name it, I'll discuss it, write about it, try to address my readers' questions and concerns.

If this question is about "taboos" outside of the context of RSD/CRPS or other health concerns, what is it doing in this challenge? Even there, I'm not a taboo-y sort of person, not exactly easily shockable, but I also don't see the point in discussing something people "don't want to talk about" without a pretty compelling reason....  and (no offence but)this prompt hasn't given me enough detail to be one. So-o, this rather non-answer... is my answer. (What an uncooperative creature I am sometimes!)


November 10

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 10

A video/song that helps you get by when times are rough 


I have great troubles with certain kinds of stimulation being pain triggers, especially and including music, so this challenge is... a challenge. However, I do still occasionally get to enjoy a (lower stim) Youtube or something of that length at very low volume, even now. The one that's given me the most pleasure and that I've watched by far the most often during this last few months was sent to me by one of my best beloved international RSD/CRPS contacts (who has become very near and dear to my heart). I would have to say, despite all this distance and the fact that we've never met in the flesh, at least in this lifetime... that she is one of my very dearest friends. So here it is, a little song from my bestie to make you smile. (It always works for me; I kept it as a "permanent tab" for months!) Enjoy!


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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 10

Alternative Medicine
Write about alternative treatments and regimens and tell us how you feel about them. What do you support? What is crazy? Have you used any?

Well, erm, yeah. That's what Taming the Beast is all about. I am a strong believer in alternative and complementary options. Though some pharmaceutical options can be truly life-saving, too often, people with intractable pain end up with too darned many.... too many drugs, too many bills, too many side-effects, too many negative interactions. Alternative and complementary, natural, non-pharmaceutical, holistic, home-based options can make a world of difference in  quantity of pain and quality of life.

What ones I support? Whatever works. You name it I've either tried it or investigated it. I am not whole hog for alternatives any more than I am whole hog for (or against) pharmaceuticals. Each patient needs to investigate and assess the suitability of each option for herself... though there are such a myriad of options that a little help could be worth a great deal (which is why I am spending so much of myself in this work). How do I assess a product or therapy? I look for, and examine the research (and the quality of research) that's been done on it. I seek out real people (who are not being paid to assist with advertising a product) to learn about their experiences. (I hope to have my survey ready in the new year; please, please, please, share your experiences to help others when the time comes!) I break it down into its component parts and/or theories, I look at its price and how it is marketed. Often, if it is not ruled out as "likely to be snake oil" by any of the investigation, I try it; both for my own hope and health, and as a guinea pig for Taming the Beast.

One example of a product I've put into the "snake oil" class is a certain "Healing Mat" with an integral ionizer and a few other bells and whistles, which shall remain nameless for this article (well, let's call it the *Money Mat*). Though there is a range of merit in its component parts, the two big clues here are:

1. The price: though it's very hard to actually find the price in the many pages of advertising, it's hefty (over $1,500!) for what is essentially a large heating pad with some "amethyst" powder (which would cost them very little as a waste product) and a number of other tricksy bits.Their product might cost them as much as 1/100th what they are selling it for.... maybe even a very little bit more. That type of mark-up is a warning.

2. The marketing. They repeatedly imply that it is in some way endorsed by the US FDA. Not so. It, like any heating pad, is simply registered with them as a "Class II Registered medical device" as they are mandated to do by law; it has neither been assessed or endorsed by any government or non-government agency of any kind. They rely heavily "testimonials", and cite "studies" that are not about their product at all. For example, they claim that their product will "Burn calories and help maintain weight", saying that "As you rest on your *Money Mat* (tm), your body is hard at work, producing sweat, pumping blood, and burning calories..."  (just as any mammalian body is during rest or sleep), and cite an AMA study on the benefits of sauna therapies as proof of this (presumably based on the fact that, as you are laying on a heating pad, you may or may not be sweating more than you would be otherwise). They also appear to be a bit of a "pyramid" sales scheme, though I have not fully investigated that aspect of their marketing. I do know that a very pushy and manipulative sales woman tried very determinedly to convince my rather frail 85 year old mother to purchase one for me... I was not impressed. Such aggressive and deceptive marketing practices are an uber warning!

Should some of my readers be using this or a similar product, I don't doubt that you may be getting some benefit from it, as you would any product that warms and soothes your hurting body. I am even a believer (in a moderate way) in the potential healing power of crystals and other minerals. What concerns me here is the price to manufacturing cost, and the consumer cost to benefit ratio, as well as the deceptive marketing strategies used by this company. I am using this product as an example of the dishonest practices that the consumer needs to be aware and beware of in assessing alternative therapies. Despite government organizations designed to check on safety and marketing practices, deceptive and immoral practices certainly exist within the pharmaceutical industry as well.  And the deck is stacked in favour of the industry, as it has such powerful lobbying clout. For instance, did you know that manufacturers of drugs are not required to publish any studies that show adverse effects of their products unless they happen to want to? And why would they? Here's a link to sign a petition asking that this immoral practice be stopped: http://www.alltrials.net/all-trials/ (Thanks to Elle of http://elleandtheautognome.wordpress.com for making me and the rest of her readers aware of this initiative!)

The reality is, people in high level chronic pain are not necessarily cognitively equipped, each moment of a pain filled day, with the brain power and steam to make these assessments. Here's a super article about the reasons behind this: http://livinganyway.blogspot.ca/2011/03/dopamine-poverty-and-pain-lighter-side.html As well, the need of people in endless pain is so terribly great,  it is even more unethical for the makers of health products to be using questionable means to market their goods. This said, once we separate the wheat from the chaff, and rule out the more obviously dubious products and therapies, there are a great many viable, reliable options to choose from to help create an individualized set of healing tools for each of us.

In Taming the Beast (the book) I will be providing checklists to help my readers assess health products, therapies, and practitioners, and a range of decision making tools to help with these vital processes. Some things that are actually very helpful to many may sound pretty flaky at first, while some things that sound reasonable don't hold up to a serious examination. I want to help every person suffering from intractable pain to be able to make safe choices and use alternative therapies to Tame their Beasts. And I would love to hear about your experiences in searching out alternatives so others can learn from you as well. Please feel free to email me with your experiences, and please, please do pop by when my survey is out; your experiences are part of a crucial body of knowledge that we can share with each other, and doing so can be a truly empowering experience in itself.


November 11

A Day in My Life Photo Challenge for 30 Days of RSD/CRPS Awareness - Day 11

A picture of what inspires you.

Ok... maybe "inspires" isn't exactly right; maybe "drives" is more apt, but after a lot of thought I decided that this bony fellow with the hour glass is my response. Yup. Death. Mortality. My ever increasing awareness of being on the clock, which is ticking ticking ticking. My knowledge that I probably don't have a whole heck of a lot of time to accomplish my goals, and so many barriers to my doing so. Even if I had a full long life, it wouldn't be half time enough, and I have a number of reasons to believe that I may not get the "full meal deal"... and I have already lost so very many years, months, days and hours to my Beast(s). So it may be a funky thing to say, but I am inspired by my awareness of my mortality to making it through each pain flare, each reaction, each struggle, and to trying to wrest out of each day that I am given, some sort of progress towards my goals.

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wego Health:  30 Days, 30 Posts for National Health Blog Post Month - Day 11

Veteran’s Day
For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11th hour on the 11th day of the 11th month. Do you have a task you complete every day at the same time that helps you with your chronic illness? How long have you been doing this, how has it helped?

Oh my! This post prompt pokes me about an issue that's been really needing my renewed commitment! I am a big believer in the benefits of time management, and I am well aware of the myriad psychological, physiological, and practical benefits that come to us when we  when we stick to a daily routine. We are creatures of habit; our bodies thrive on routine and our psyches crave it. Here's a sampling of the benefits; following a routine will:

  • Lower your levels of cortisol, norepinephrine, and other stress hormones; providing straight forward pain and stress management gains, and notably decreased levels of pain and neurological dysfunction in sufferers of chronic pain syndromes.
  • Re-set, normalize and stabilize your circadian rhythms, which is crucial when intractable pain is part of your reality. This will make it easier to get to sleep, stay asleep, and wake up in the morning, and the sleep you get will be deeper and more restorative. Better sleep means more stable emotions, less pain, better cognitive functioning. Your entire brain, body and being will be thanking you!
  • Aid in every facet of digestion by having your digestive "engine" prepped and ready to go in advance of meals. Knowing when food will be coming means the body can increase saliva and get the digestive enzymes in place to better break down the food; better digested food means that smaller particles enter the bloodstream, decreasing potential reactivity, and more nutrients, especially those crucial anti-inflammatory micro-nutrients per mouthful, helping fight the nutritional deficiencies that so many of are prone to while fighting pain itself. Better digestion means less gastro esophageal reflux, heartburn, nausea, early satiety, delayed gastric emptying, painful cramping during the  digestive process, diarrhea and constipation (all problems common to those with conditions of chronic pain and inflammation); to put it simply, the whole process will work better from beginning to end.
  • Help with reaching your physiotherapy and rehabilitative goals. Part of the aim of anyone dreaming of remission from RSD/CRPS or other chronic pain syndrome is to train the brain and body that movement is possible without increased pain. The brain of a person with chronic pain is much like a person with a seizure disorder; sadly, negative patterns (like hyper-reactivity and increased pain in response to movement) are  easily set and much less easily broken.   Having exercise and recovery time scheduled into each day at the same time greatly increases your chance of catching a ride on the neuroplasticity train, and making real headway with mobilization and rehabilitation.
  • Aid in alternative healing therapies. Studies have shown that most cognitive/behavioral, meditation, hypnotherapy, and biofeedback type of practices work best on a steady, reliable schedule; so that means more bang for your rehab buck in every area!
  • Even sexuality, which is a challenge for many in chronic pain, can be eased by having a scheduled "snuggle time"; that way the body, mind, and heart can anticipate, knowing that soon it will be time for intimacy, which over time will aid in allowing mind and body to relax and respond... even if sometimes the degree of cuddle and the degree of passion vary; and, big bonus; if it's scheduled it will actually happen rather than always being pushed aside in a busy life of Beast Taming.
  • Just knowing that structures are in place is a huge stress relief benefit for people who are constantly short on neurotransmitters; every decision that you don't have to make because it's already been made and your schedule is in place means more neurotransmitters for making emergency decisions and just dealing with pain.
  • As every successful business knows, schedules mean time management, which means increased productivity and decreased waste. Planning just saves so much time! And for people struggling with recalcitrant and demanding Beasts, that time is more valuable than diamonds.

Well, there are more, but there's a start and it's pretty significant! I know these things well. I've done the research, a longer, well cited version of this wee article is planned to be a part of Taming the Beast (the book), but then... Life Happens. My family  life is complex; we are juggling multiple family business and schooling endeavors including farming a property shared by 4 adults, all of whom have some degree of chronic health issues. And yes, 2 of the 3 are young adults, but we are trying to function not as a hierarchy, but as a consensual, cooperative collective of adults working toward shared goals; it's a head spinningly complex reality! Most of my family abide to greater and lesser degrees upon schedules; after all goats need to be milked every 12 hours or so and they aren't all that forgiving of slackers! It's a challenge to make a schedule that can realistically cover all that needs to be done around here, and it's frequently needing revamping and altering to fit our busy life. But it's me who most often falls off the wagon.

My family knows to their bones that RSD/CRPS and immune dysfunction are both unpredictable, unforgiving, multi-symptom Beasts, and they are more than understanding about my difficulties with meeting any kind of scheduling expectations. However, I know that some of my challenges are inherent in my personality; I secretly abhor a scheduled life! However, I know better. I want to be well, as well as I can. Routine is an incredibly valuable tool to that end. It's time to get back on the schedule train and ride that engine better than ever before! I needed the poke on this one; thanks for the reminder, wego!



Author: Lili Wilde
Date Posted: 2013-11-11   Date Last Edited: 2013-11-12 09:00:01

Comments (2)

Topic: Here we go... "Fashionably Late"... again. - Taming The Beast
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25th May 2017 2:50am
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