PAIN SCALE VS. SUFFERING SCALE

Many people, even “normal” people who don’t have a roster of medical specialists have seen pain scales. The most commonly used (posted all over ER exam rooms around the world) is the Wong-Baker FACES® Pain Rating Scale. It was a tool initially design to helpfaces_english_blue1assess pain in pediatric patients but it is now widely used for patients 3-years-old into adulthood. More in-depth scales have been created based on this principal of rating pain from 0 to 1untitled0, with 10 being the worst pain that one can imagine. This “Universal Pain Assessment Tool” (below) is seen a lot too. Based on the Wong-Baker scale, it adds more detail.

I am not the first patient to feel frustrated by such scales. Yes, they are useful for medical professionals to get a quick idea of pain levels but they are also lacking, particularly when it comes to people who deal with chronic pain or who have a high pain tolerance. Such scales also can fall short because a person’s “worst pain possible” is variable. To illustrate, when I first started dealing with chronic pain, I spent a lot of time in bed or resting. I spent a lot of time with “Moderate Pain” (blue and purple faces). Now, despite pain levels increasing, I spend most of my time with the “No Pain” green happy face. pain_ratingAdditionally, some people have gone through extreme pain comparative-scaleexperiences. I know a few people who have had hollow organ ruptures (appendix, ureter etc.)…. whereas someone else may have experiences a sprained ankle as their worst pain so far. These past experiences would change someone’s pain scale perception drastically. In my search I invisible-illness-with-emoticons-403x403-72dpi-webcame across one scale that rates “comparative pain” (something I wrote about in a previous blog which you may be interested in reading here).  I have seen numerous blog posts and memes (like the one to the left) that approach this issue of chronic pain often being invisible.

The scales I have found most useful for myself so far2011-10-24-scale-of-pain have been those based on functionality. Instead of assessing pain, it assesses the person’s ability to function. In the pain management world, functionality is the focus of pain management specialists anyway with the focus being taken away from quantifying a person’s pain. An example would be the Functional Ability Scale or the Work and Social Adjustment Scale (WSAS) – Serenity Programme.

Though this is all very complex, when I doctor asks you to rate your pain from 1 to 10 with 10 being the worst pain you can imagine, you can’t delve into a five minute discussion raising all the relevant points. The key is to be skillful. I often quickly state what my 10 is and what my 5 is so that there is perspective setting. I also often mention how pain and suffering are not the same thing… which I don’t dig deep into in a specialist’s office but I will elaborate on here.

In the first months of my chronic pain condition, I took a mindfulness for chronic pain course series at the Ottawa Mindfulness Clinic. One of the most poignant pieces of information I took from the course was: SUFFERING = PAIN x RESISTANCE. If I were to be completely and utter (body and soul) non-resistant to the pain my mind tallies, I would have absolutely no suffering. Now, though I practice informal mindfulness every day, I do not expect to get anywhere near Enlightenment in this lifetime! The message is still valid though.

I believe a good compliment to the Pain Scale would be a “Suffering Scale”. Here is one I created base on my own experiences. It is not rigorously research or thought-upon by any means.

SUFFERING SCALE FOR PAIN

0 – EVERY experience is truth and wonder. I register all my pains and discomforts with the same perspective and curiosity that I register my joys and see them as they are. I am the opposite of numb.

1 – I live a life of full of joy and wonder but I have to be vigilant in my mindfulness. When I experience suffering, I do not hide from it but I may not identify it truthfully at first.

2 – The perspective or stance I take on my life means I spend quite a bit of time and energy dwelling in places that can easily lead to suffering.

3 – My negative emotions and physical pain cause me enough suffering that it is leaking into the lives of those around me and adding to their suffering.

4 – I can no longer process thoughts effectively about suffering, pain, or anything. My suffering is physically and emotionally blinding.

5 – Disassociation from self. I do not register pain or joy. My body and mind are detached and numb.

This is a quick version I jotted down. What do you think? What would you change or add? This does give you a bit of a idea of what I mean though. Someone could be at Level 5 out of 10 on the Pain Scale but 1 out of 5 on the above Suffering Scale. Level of suffering compared to that of pain makes a HUGE difference. When someone expresses sadness or pity toward me, I often respond with, “I am happy. My life is full of joy. I may experience chronic pain but I believe I am suffering much less than a lot of people who experience no bodily pain.”

Chronic pain has changed my life. The trick is to keep seeing it as a different life and not a worse life. Working at it every day! 🙂

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THE OPPOSITE OF CHRONIC ILLNESS IS…

I recently finished reading Brené Brown‘s The Gifts of Imperfection. Earlier this year I read Daring Greatly and Rising Strong. Brené identifies herself as a researching and a storyteller. She initially started researching “connection”. She saw it is as a basic need for human beings and so wanted to dissect it. In looking more closely at the “anatomy of connection” she was blindsided by “shame” and “vulnerability”. As Brené writes ” I didn’t sign on to study shame— one of the most (if not the most) complex and multifaceted emotions that we experience. A topic that not only took me six years to understand, but an emotion that is so powerful that the mere mention of the word shame triggers discomfort and avoidance in people.” (source)

Aside from her honest and heart-full accounting of her research findings, what I took away from her books were the definitions she wrote based on her “grounded research”. As Brené explaines: “The grounded theory process consists of five basic components: theoretical sensitivity, theoretical sampling, coding, theoretical memoing, and sorting. These five components were integrated by the constant-comparison method of data analysis. The goal of the research was to understand the participants’ ‘main concerns; related to experiencing the topic being examined (e.g., shame, Wholeheartedness, vulnerability). Once the main concerns emerged from the data, I developed a theory that explains how the participants continually resolve their concerns in their daily lives.” (source). The thing with the grounded theory framework is, if there is even just one outlier, then it doesn’t work. Every single sample/interview needs to fit the finding/definition or else the work is not right yet.

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Source of image: http://quotesgram.com/courage-and-fear-brene-brown-quotes/ (accessed: 2016-10-17)

I am not a religious person but I am full to the brim with faith and spirituality. When I read Brené’s definitions of these two concepts, I felt relief. Smiling, nodding, peaceful relief. If you ask enough people what “faith” is to them (hundreds of people), if you listen to hear them and then code their responses and analyze them… this would be the definition of faith that arises (picture to the right). A definition that would fit with each of those individuals’ world views. And see how Brené defines spirituality based on her research below.

 

 

Last week, after finishing The Gifts of Imperfection I started wondering… What’s the definition of “chronic illness” that would do the same thing. The would ring true and fill me with relief because of its correctness. In the medical community, the definition of chronic disease leans heavily on the duration of the health problem and its persistent nature.

“Although the literature does not support a single uniform definition for chronic disease, recurrent themes include the non–self-limited nature, the association with persistent and recurring health problems, and a duration measured in months and years, not days and weeks.” (Thrall, 2005 as quoted in Goodman et al, 2013)

Interestingly, there can be a differentiation made between “chronic disease” and “chronic illness” where:

Chronic disease is defined on the basis of the biomedical disease classification, and includes diabetes, asthma, and depression.4 Chronic illness is the personal experience of living with the affliction that often accompanies chronic disease.” (Martin, 2007)

Though such definitions can be useful, they have been studied, explored, and written by medical professionals. They do not make me smile peacefully because they ring true with correctness. Although I have not interviewed and codified under a grounded theory framework hundreds of interviews, I have communicated with at least a couple of dozen people with chronic illnesses and I myself live with chronic illness. I will now blunder around trying to nail down my best attempt at my own definition for chronic illness.

[Picture me at my desk at home with a fresh cup of tea, a blank piece of paper, and a pen. I will be back when I have something I think might work.]

What is chronic illness?

What is chronic illness?

And still I don’t know if this really covers it…

This idea of changing states is interesting because there is the belief that, though a different (“healthy” or “normal”) self is left behind and mourned, the true essence of self still remains. I wonder then about people who have lived with illness for as long as they can remember. I guess for such people, memories of puddle life may not be vivid (or may not exist at all) but they can see other puddles and imagine / project themselves into puddle form. Ok, this analogy has come far enough I think 🙂

542702244Another image that came to mind for me is that of a large ash tree. It is cut down because of disease. It still has its roots and it still has its tree rings of experience… but it is so very different. The new growth that comes up from the sides of the old trunk are definitely not the same as the full-grown tree, but still definitely ash. Also still drawing on the same soil. With this analogy, a younger person who has chronic illness would be a little ash sapling sprouting from the side of a truck that has fewer rings or not many rings at all.

What do you think? What would be your definition of chronic illness? 🙂 Get yourself a fresh cup of tea and have a go!

I’m going to move on and finish with the title of this blog post, “The Opposite of Chronic Illness Is…”

 

This is even more difficult to tackle. I lay in bed thinking about this for a

From The Gifts of Imperfection - Brené Brown

From The Gifts of Imperfection – Brené Brown

while last week. Just mulling ideas and feelings around. Another way to think of a concept besides working on a definition is to ask what the opposite of this concept is. For instance, Brené writes that the opposite of “scarcity” isn’t “abundance“, it’s “enough“. Do you feel the strength in this truth? I do! In The Gifts of Imperfection Brené quotes Anne Lamott: “The opposite of faith in not doubt; but certainty” from Plan B: Further Thoughts on Faith.

And so, what is the opposite of chronic illness?

 

The opposite of chronic illness is not health. It is living without a heavy, unretractable, and lonely burden of body and mind.

And so, though a person can come to a peaceful, joyful place (this is where the “you look great” comments are prolific), doesn’t mean that the constant burden is not being carried. It just means the grace with which this is being done is astounding. When someone says, “you look great” to me, I will, from this moment forth, stop feeling the “well I don’t feel great” side of things and instead translate “you look great” to: “You are carrying your burden with such grace that the joy within you is glowing brightly enough that it also brings me joy!

A friend of a friend once wrote to me that before chronic illness, his body was a “trustworthy companion willing to do just about anything” and for many healthy people, that is taken for granted. Chronic illness turns this friend into a burden and challenges the sufferer to once again build a strong friendship anew.

The opposite of chronic illness...

The opposite of chronic illness…

 

 

“FEW-FOODS” ELIMINATION DIET: Tough Love and Necessary Evils

I have been putting off writing this post for months. As with my last post on medical marijuana, the main reason is that I know it’s going to take a while to write. There is a lot of information and it’s a treatment option that takes a while to explore.

In January of this year (2016), I had my follow-up appointment with Dr. Peter Vadas in Toronto who said I have suspected Mast Cell Activation Disorder (MCAS). Read more here. Upon joining support groups (FYI, there is an group specific to Canada on Facebook, “Canadian Masties”), I understood that diet can play a pivitol role in helping to control “allergic” reactions.

The reason “allergic” is in quotations is because only true allergies are known in the medical community as allergies. True allergies are those mediated by IgE immunoglobulins. To see how this works, here’s a video:

For IgE-mediated allergies or “true allergies”, a skin prick test or a blood test can be effective for diagnosis.

All non-IgE-mediated reactions are called “intolerances” (and not allergies) and they can only really be tested by doing an elimination diet. If a certain food or environmental trigger is suspected, that food is taken out of the diet and then reintroduced. All elimination diets should be done under the supervision of a health care professional. When a certain food(s) is suspected, the person may go on a Selective Elimination Diet where the food(s) is avoided an then reintroduced. The person observes and takes notes. Examples of foods that may be avoided are: milk, egg, wheat, peanut, soy, shellfish, lactose, sulfites, nickel, artificial food colouring, MSG etc. 51fkLa1xG1L._SX258_BO1,204,203,200_

When, as in my case, I was unsure of what my triggers are, a Few-Foods Elimination Diet may be warranted. I recommend Dr. Janice Vickerstaff Joneja’s (PhD, RDN) book, Dealing with Food Allergies (2003) as a good road map to helping you navigate exploring your own allergies / intolerances.

On p. 331 of her book, Dr. Joneja writes: “A few-foods elimination diet differs from a selective elimination in that only a small number of foods are allowed. These are the foods that are considered to be the least likely to trigger an allergic reaction. Such diets are indicated when there are many symptoms with no clear relationship to specific foods.” On the same page there is a very important note on the length of which such a diet should be followed: “Because a few-foods elimination diet is not nutritionally complete, it should never be followed for more than 14 days. Usually only 7 to 10 days is sufficient to show results, and this period should not be exceeded for children under 7 years of age.”

To put it in other terms, an selective elimination diet would involve taking out a maximum of about a dozen foods, whereas a few-foods elimination diet would have you only eating only about a dozen foods.

With suspected MCAS and reactions that seemed willy-nilly, I decided I needed to do a few-foods elimination diet. I had tried a “clean” diet before (eliminating major allergens) about 10 years ago with no observable improvement in symptoms (I had chronic fatigue at the time) but I was ready to try something similar again.

Oral Allergy Syndrome: foods list.

Oral Allergy Syndrome: foods list.

 

It took about a week to figure out my least likely trigger foods. The few-foods diet I ended up doing was major-allergen-free, low-histamine-and-tyramine, and free of everything I have ever had the slightest reaction to, including Oral Allergy Syndrome (OAS) reactions.

I had homemade gluten-free, nightshade-free, rice milk, pancakes with maple syrup for breakfast. (Note: most gluten-free all-purpose flour mixes have potato starch. I really like this gluten-free flour for non-yeast baking: Cuisine l’Angélique farine tout usage. It does have flax though so if you can’t do flax, it won’t work for you). I had noodle soup with organic turkey and a cooked veggie for lunch, and converted (parboiled) rice with organic bison and a cooked veggie for supper. My safe veggies were those of the broccoli family (bok choy, Brussel sprouts, kale, collards) but NOT cauliflower. I could tolerate sweet peas occasionally as well. For dessert I would have rice cakes drizzled with agave syrup (though the agave made my throat dry, I chose to ignore it 😛 ). Seasoning was only salt, nothing else.

So this diet was 14 days long. After the two weeks, one can add back slowly one food at a time every TWO days. Even more complicated than that, foods can be broken down into many components. For instance, milk can be EIGHT different challenges: casein, biogenic amines + annatto, whey, lactose, modified milk proteins + partially digested lactose, curdled milk with minimum fermentation, complete milk with a complex manufactured product, etc!! (This list was taken from pages 442 and 442 of Dr. Joneja’s book. She has tables to help guided the “sequential incremental dose challenge” phase). Adding back slowly means that when a new food is added, one has a small amount between breakfast and lunch, twice that amount between lunch and supper, and twice that amount again after supper. If an adverse reaction occurs at any point, one is to stop the food immediately and wait at least 48 hours after the symptoms have subsided until reintroducing something else new (Note: I did not stick by the 48h rule for my firs potato papular urticaria reaction – see below – because I would have had to wait over a month!).

My Few-Foods Elimination Diet Realizations:

1. I realized that I really do enjoy a morning coffee. After milk (which I introduced back in one fell swoop), I added coffee. Adding coffee is a big deal because it is a high-histamine product, among other things and so it would technically take up a lot of space in my “bucket” (see photo below)… but undertaking suck a diet highlights the things that are most important. For me, coffee opened up the ability to socialize with friends without having to request just hot water (yes, hot water in a cup with nothing else, thank you).

2. Turkey is not special and festive AT ALL when you are eating it functionally. I cooked two whole organic turkeys and took the meat off them, packing it into ziplock bags to stick in the freezer. Handling this much meat (particularly we don’t prepare much animal meat at home) is nauseating. Yes, I still have some frozen turkey in the freezer. Yes, the smell of turkey still makes me woozy.

3. I am good at “Tetrising” in the freezer. A low-histamine diet means all food must be fresh or reheated from frozen. This is because histamines build as soon as the food cools enough for microbes to start doing their work. A full-turkey-of-meat is a lot of meat.

The Leaning Tower of Elimination Diet Resealable Bags

The Leaning Tower of Elimination Diet Resealable Bags

4. Cooking for young children, a vegetarian partner and a few-foods-elimination-diet self is A LOT of work.

5. I am the best person I know at really stacking up the dish drying rack.

6. A circular slab of gluten-free “crust” and steamed cauliflower (which is the same colour as mozzarella cheese) does not a pizza make.  What’s more disappoint is that it was this “pizza” which resulted in me taking cauliflower off my few-foods list (so I couldn’t eat more than one slice anyway!).

"Pizza"

“Pizza”

7. When you tell a restaurant they can ONLY season with salt, they have a really hard time listening to the words coming out of your mouth.

8. It is confirmed that Lyrica makes me gain weight (2/3 lb per week). Even on this crazy calorie-restricted-due-to-its-nature diet, I gained weight because of Lyrica. I have decided feet that often feel like they’re in ski boots and hands that often feel like a book dropped on them 30 seconds ago is background noise I am willing to have in exchange for carrying less weight around on said feet (and knees etc.)

9. I love food. All food. Varied food.

DSCN7746

Papular urticaria (self-diagnosed so little weight) the morning after having a heap of mashed potatoes for reintroduction in a few-foods elimination diet.

END RESULT: Although I did have some reactions, including some stronger reactions (see picture on the left of large “mosquito bites” from reintroducing potato), I could not reproduced them (I tried eliminating and re-adding potato twice, include once timed with my cycle). Any crazy heartburn, light-headedness, headaches, heart weirdness, throat/mouth weirdness, GI output etc. could not really be reproduced with any reliability. The conclusion for me is that, though I do have reactions to foods (certain foods more than others), these reactions are not strong enough, nor consistent enough for me to modify my diet. For now any reactions I have I will attribute to wacky mast cells that are leaking again (MCAS). I will reconsider re-doing a similar diet again in another 10 years or so to see if anything has changed.

 

Parting words of advice:

  • A few-foods elimination diet can be worthwhile thing to do, but proceed only when you are convinced it is necessary. It is hard and once you start, you wanna be able to stay true and hold your course.
  • Borrow Dr. Joneja’s book from your local library or consider purchasing a copy to help you understand food allergies and intolerances better. Alternatively, find a healthcare professional who is willing to guide you in detail through such a diet.
  • (Expensive) IgG and IgA food intolerance testing is not yet backed by sound scientific data so it is not recommend it as a diagnostic tool. For some people, I can see how such testing may serve to guide a selective elimination diet. Really though, for intolerances, the only way you can find out what’s affecting you is by using yourself as a Guinea pig.

It is not always easy to love a chronically ill body and treatment options all come with their own challenges. So now the post is done. Phew! I can finally return Dr. Joneja’s book to the library and, though it was informative, I hope to not see again for a long long while!

 

MEDICAL MARIJAUNA: Is it right for me and my family?

Anyone who has sat for a while with a chronic illness knows all about this aphorism: “Anything’s worth trying at least once.” Just as there are countless diseases and conditions out there, there are endless options for treatment, intervention and coping.

I thought that medical marijuana (MM) was an “end of the line” option for pain treatment. I did not expect it to be offered to me as an option this past fall by my pain management specialist.

A good friend of mine has been medicating using MM for years and I have seen its benefits. Still though, I could identify some inner resistance. My resistance to it as a treatment option came as a result of a number of gremlins:

MEDICAL MARIJUANA. Argyle+ strain by Tweed.

MEDICAL MARIJUANA. Argyle+ strain by Tweed.

  • Family: I have two young children. How can I manage this new medication responsibly? I have a husband who’s “not thrilled” about MM. How much should I share/withhold from him so that our relationship is minimally affected?
  • Society: I am an extroverted sharer and so like to share my experiences. MM is still relatively new in Canada and so there is still a fog of taboo around it as a treatment option. There is still a lot lot to be done in raising education/awareness. Will I be labeled (or self-label) as a “pot head” or “stoner”?
  • Unknown: As with starting any new medication, there can be side effects and placebo effects. It is embarking upon a voyage that puts pressure on self (to feel effects, to be able to identify them and record them, to be able to decide whether it’s helping or not) and is lonely, in the same way chronic illness can be lonely (because not matter how large your support structure is, your own experience is unique to you). “Here I go again, trying something new, pretty much on my own!”
  • Financial: MM is not covered by provincial health care plans and, unless one has an extreme case and is willing to put a life-shortening amount of work dealing with an insurance company, it is also not covered by extended health care plans (though there are whisperings that this could change). Canadian veterans can qualify to have their MM costs reimbursed by Veterans Affairs Canada, but this does not suit my case (and this practice is currently under review). What this means is that part of the cost – benefit analysis of MM as a treatment option has to take into account financial resources.
  • Negative effects: Will MM damange (or affect in some way) my brain and/or who I am as a person?

I will now quickly address my own points of resistance to MM and then go on to outline my experiences with it so far.

  • Family: I decided to first try edibles. They can be kept in the freezer and are discreet. I can even make my own gel caps so it looks like other medicine. (Though I also try to take my other meds discreetly too… something I will have to write another blog post about at some point 🙂 ) Vapourizers don’t give off much smell and vape pens are quite small but at first I was not ready to invest $70 – $300+ on a little vapourizer. Hubby understands that everything’s worth trying and wants to be in the loop but doesn’t need to know details. Ok, we’re clear for take off!
  • Society: Though I realize that for some people, consciously choosing to acknowledge and then quell societal (and self) stamps of “stoner” or “pot head” etc. is a big challenge, it is something that I have managed to do through knowledge. In order to dispel myths, one must be armed with truths. For instance, THC is the psycho-active component of MM and “street” marijuana is always high in THC (the higher the better). CBD, the component most often cited for chronic pain does not result in feeling “high” and actually counters THC effects as well. MM is regulated and concentrations of THC and CBD are known precisely and listed. The strains available to the medical user are varied.
  • Unknown: Well, everyone deals with this everyone in one form or another. That’s life folks! 🙂
  • Financial: The amounts I would be using to try it out would be minimal. I also picked a licensed producer (LP), Tweed, that offered “compassionate pricing” (in this case 20% off) based on personal income (as opposed to family income or official disability status).
  • Negative effects: Taking MM as edibles or vaporizing MM eliminates much of the unwanted effects of inhaling combusted plant material. Edibles means children aren’t affect psychologically by seeing (or smelling) someone smoke… though edibles do involve cooking and some smell, which I will talk about later. MM works on the central nervous system. It is shock full of substances that can affect your neural functioning in different ways. It should be used under the supervision of a medical professional. Here’s Health Canada’s Consumer Information sheet on MM. Again, anything’s worth trying at least once, right? I have tried Naproxen, Zoloft, Cymbalta, Lyrica and Celebrex… time to try a different tack. Fibromyalgia News Today has this to say about using marijuana to treat chronic pain.
My first shipment arrives.

MY FIRST SHIPMENT ARRIVES. Canada Post delivers 10 grams of marijuana to my door. This is SO WEIRD! What a bizarre feeling! It will take a lot of self (and societal) awareness to not feel weird about getting weed legally delivered to my front door.

CONTENTS OF SHIPMENT. Tweed's two strains I ordered in the black box. Also a Health Canada Consumer Information booklet and a sticker to put onto my wallet card (which I have to carry on me if I'm using MM).

CONTENTS OF SHIPMENT. Tweed’s two strains I ordered in the black box. Also a Health Canada Consumer Information booklet and a sticker to put onto my wallet card (which I have to carry on me if I’m using MM).

If you are interested in trying MM, you can speak with your family doctor or pain specialist. If (s)he is not comfortable prescribing MM, (s)he can refer to someone else. If it is not a treatment option whatsoever for your doctor, you can also go to a compassion club or clinic / dispensary that sometimes offer onsite medical doctors (as well as general help / expertise) in guiding you through the process.

For more information, visit the Health Canada site on Medical Use of Marijauna. Here are the Procedures of Accessing for Marijuana. The form your doctor needs to fill out that is required for you to be able to register with a licensed producer is here. And the list of licensed producers is here.

So my first shipment arrived back in the winter. I did reading online as to how to prepare it properly as an edible, including decarboxylating and then suspension in a fat (cannabutter, cannamilk, canna coconut oil). We (hubby and I) decided that I would do any cooking during they day so that any smell would have time to clear before anyone else got home. Ingesting MM is meant to give a more delayed effect that also lasts longer. A friend relayed that it takes 2-4 hours for the effect to settle in (update: a second informal source has said it’s more like 30 minutes to 2 hours) and can last as much as 8-10 hours. With smoking or vapourizing, effects are instant and settle in completely after an hour or two. It lasts 4-6 hours.

CANNAMILK ICE CUBES. I made cannamilk and used a dropper (to help with dosing accuracy) to freeze ice cubes. I would use one or two in my morning coffee.

CANNAMILK ICE CUBES. I made cannamilk and used a dropper (to help with dosing accuracy) to freeze ice cubes. I would use one or two in my morning coffee.

I’ve had a few interesting experiences with MM so far. They are harmless funny stories. Ask me about the time I thought I was getting my family high (I wasn’t, I didn’t). Or about the time I tried to roll and smoke my first “joint” alone in my back yard in the middle of the afternoon with a BBQ lighter.

Interesting side note: Aside from fibromyalgia, I also have suspected Mast Cell Activation Syndrome (MCAS). There was a period of a few months where I stopped experimenting with MM because I thought it was a trigger for MCAS symptoms (or that I was “allergic” to it). I haven’t been able to reproduce symptoms though so I see any past over-exaggerated reactions as random mast cell silliness.

PHARMA BEE HONEY STICK. A disposable THCe-liquid device which serves as a stand-alone cannabis vaporizer.

PHARMA BEE HONEY STICK. A disposable THCe-liquid device which serves as a stand-alone cannabis vaporizer.

Not long ago, a friend gave me a Pharma Bee Honey Stick and I’ve found it very very handy. It’s tiny and is just ready-to-go. It fits in my palm and so I can use it inconspicuously in public (or even if my children are around). It gives off very little smell. Unfortunately, it is a disposable product.

Since using the Honey Stick, I have ordered a vaporizer pen to try with dry herbs. This has produced mixed results for now (I think mostly because of the lower quality / cheaper pen I bought). Now cannabis oils are also available through licensed producers so I think I will try vaporizing oil so that I don’t have to deal with actual plant material. I am also considering visiting a marijuana lounge so that I can try a high quality vaporizer and gain more knowledge(because like everything it takes time and effort to become an expert).

So for now the question about whether medical marijuana is right for me and my family is still up in the air a bit. My feeling is that, yes, it will become a regular tool in my chronic pain tool belt. Good experiences so far include, enjoying a spring walk where I noticed birds and a gorgeous roofing job instead of focusing on managing my pain with each step (even just the fact that I got up just to go for a walk was a bring surprise!). I can do things like watch a movie or sit at a conference etc. better without fidgeting from discomfort. I enjoy extended time with my children more (it increases my endurance and adds to the quality of my presence).

The best way I can describe it is that it’s not always better but it is different. I think the challenge is working out whether that “different” is better or not. It also takes lots and lots of time and experimenting. There are hundreds of strains and many ways to medicate, which all yield different results.

So I will leave you with this… just because you walk by someone and smell marijuana doesn’t mean they are a misfit or lazy or a stoner or irresponsible… You might have just walked by a medicating mindful mother with chronic pain.

 

ADDED POST-PUBLISHING: I’m not at the point where I am using MM every day by any means. It’s more of about 1-3 times per week as needed (unless it’s a really rough week). Also, my initial THC max as indicated by my pain management specialist is 10% or under. Although my prescription is for up to 1 gram a day (that’s A LOT), I may use 1 gram a WEEK if I’m having a bad week.

WHAT ARE SCHOOLS FOR? WHAT ARE STANDARDIZED TESTS FOR? Intention vs. reality

What are schools for? This was a question put to my group in our first class with Professor Joel Westheimer at the University of Ottawa for our Bachelor of Education program. Answers ranged from, “nurturing good citizens” to “providing fully subsidized babysitting”.

This week alone, I have had two parents comment on how my son’s school scores very low in school rankings. I have a few comments to make based around the ideas of “stance” and “intention”. If I evaluate my own stance on schooling and its role in my child’s development, I would conclude that it plays an important role in helping my son learn to socialize properly, to work in groups toward a common goal, to learn points outlined in the curriculum, to explore how to best contribute his own ideas and be daring with his creativity, to help him discover who he is by challenging him variously, etc. etc. I could go on. Schools can have such impact on children!

What my stance on schooling does NOT allow space for is standardized testing. It is highly likely that, when the day(s) for such testing come around, we will keep our child at home. Why would we, two involved and present parents, two trained teachers, decide to do this? Because the intention behind standardized testing, though it may be noble, does not aligned with reality.

If testing is used to assess a student’s level of learning (i.e. as a diagnostic tool) then there is a tremendous usefulness imbued. The teacher uses results to cater learning to specific learners. If testing is used to help students (and parents and teachers) identify areas in which students are struggling, then there is certainly worth. If testing embodies the virtues of equity and not equality, then it is just.

On the other hand, testing that results in public ranking based on perceived “merit” using a tool that ultimately espouses equality instead of EQUITY is something I will try my best to  keep at arms length. The general public does not necessary question, “What are schools for?”  And many people certainly don’t question, “What are standardized tests for?” If our intention is to have this testing impact student learning (and teacher accountability) in a positive way then I believe we are far off the mark.

A specific example: a school of 300 students has a special developmentally delayed unit for students with special needs. There are 10 students in this innovative and well-received program. The program enriches school culture. The school also has five students who are recent refugees who will not write the test because their language levels are not high enough. These five students are bright and compassionate and are quickly adapting to their new situation but there’s no way they can write the standardized test. The school also has five students whose parents have chosen for different reasons to withdraw their children from testing. So, 20 students do not take the test. They all have 0%. The remaining 280 students score an average of 80%… however, because of the 0% scores, the overall average for the school is 74%… distorted… and even if it were not distorted, what does such a score even mean?

Instead of checking school rankings, parents can:
– Visit the school and meet with the administration.
– Ask when the next School Council meeting is and ask to sit in as an observer.
– Ask to be informed when the school is having its next social event or fundraiser so you can join in.
– Look at the location of the school and consider ease of access / transportation for you as a family.

Whatever you do, DO NOT ask the opinion of other parents (actually you’ll probably find you won’t have to ask as you’ll be told before asking!). I say this because most parents have not asked themselves “What are schools for?” and so may decide to go with the “best ranking” default setting… or word of mouth based loosely on truths with a sprinkle of rumour. Everyone wants what’s best so make sure you decide for yourself! You are a family that is unique with a unique family culture and set of values. Also, take time to sit down and ask yourself, “What are schools for?” so you know what’s important to you.

20151020_094457In this spring season of buying new houses and looking into new neighbourhoods, I urge you to reconsider the place “school ranking” has as a factor in your decision-making. Yes, make the decision that’s right for you and your family but understand that a number based on equality and not equity doesn’t say very much about anything… at least nothing important. Though put in place with the best of intentions, these tests more often than not perpetuate social inequality and they are just not just.

Our son doesn’t know any “Adam’s” but multiple “Ali’s”. He Canada’s official languages but can also warm hearts by saying “as-salamu alaykum” and “shukran” (Arabic for a “greeting/parting” and “thank you”… and Arabic is the third language in Ottawa). He is full of pride for his school and is happy to go every morning. His teachers are dedicated and parents have as much room for involvement as they would like. The atmosphere is vibrant, welcoming and safe. The families that make up the community have loving mothers and fathers who sit and eat with their children and ask them how their day was.

“Are you concerned about the place of your school in the rankings?”
“No, not at all because I don’t look at the rankings as I don’t think they are rating the things that are most important to me.”
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“Your school has a lot of work to do from what I can gather.”
“Yes, if by work you mean there’s a pile of compost and another pile of mulch that will need to get into the school vegetable gardens… or you’ve noticed the dandelions are getting a bit out of hand around the apple trees…. oh you meant the tests? They’re not really important to me.”

Any situation (any school) is what you make of it. Every school is full of staff and families that are caring and passionate. What you make of it is what you make of it. Less judgement, more embracing… it is a gentler path to trend and is full of marvelous experiences and wonderful surprises.

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Aside: In a similar vein it infuriates me that some GPs turn down chronic pain / illness patients in favour of having easier patients on their roster. They are paid for patients, not for complexity of care required or quality of care given. It is certainly easier to track and administer but it is not reality… a topic for another post another time.

 

 

 

 

CHRONIC PAIN TOOL BELT: Do-it-yourself around your house in need

This is an example of the chronic pain cycle.

To stop this cycle at any point, what is needed is the right tool. As a person with a chronic illness, one must amass varied and adept tools. The skills to apply these tools can be honed to become almost second-nature. Although the pain cycles can seem vicious, those of us with chronic pain can become superheroes ready to be called to action and intervene when things start spiraling.

Though it’s most fun to picture oneself as one of the heroes below….

 

…. It is actually more like being a do-it-yourself-er in a fixer-upper house. Do you have favourite tools in your tool belt? Are you using them mindfully? “Distraction” only becomes problematic if one is using this tool with a lack of awareness and skill.

Managing Chronic Pain Tool Belt

Managing Chronic Pain Tool Belt

You may no longer be working full-time. You may no longer be enjoying the same recreational activities. You may feel like you’re 40 years older than your age in years. But I bet you’ve got one heck of a loaded tool belt that’s always got room for new useful gadgets. 🙂

CAKE: On Gratitude and Joy

Two weekends ago, my eldest turned five. The boys are into Neapolitan ice cream this year so when I asked him what flavour cake he’d like of course his answer was, “Chocolate, strawberry AND vanilla!”

We are a family that doesn’t “do gifts” and so I take my birthday cakes seriously. I made it over three days to pace myself. This cake made me think of the movie CAKE that I saw (was it last year?) with my good friend. The movie is not for everyone. However, if you lead a life largely defined by chronic pain, you’ll likely find some good moments. S and I laughed heartily in some places where healthy people would not think to laugh. 🙂 It was the belly laugh of recognizing self in other and celebrating commonality, despite the naked vulnerability on-screen.

So what made me think of this movie this year? Perhaps it was because I knew it would take me a few days to complete the cake the way I wanted. Perhaps it was because my body was sore and my mind started wandering to get away. Whatever it was that brought me to rethink about this movie, the end result was that I found myself filled with gratitude for my innumerable blessings. Filled with joy. For a little elaboration on joy and gratitude, have a listen to this clip of Brené Brown.

I am thankful to have people with whom to celebrate.

I am thankful to have the time and means to express myself creatively.

I am thankful that I am appreciated.

I am thankful to be enough and know I am enough.

I hope you are having a day full of details and little joys.

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