My own everest

With a fiery rage my legs burned, there was a sharp pain-filled lightening storm brewing in my back and my  shoulders feel like the literal weight of the world has crashed down on them...yikes. So what has happened to me, you ask....well dear friends I have been victorious today. I hiked. enough said right!

I know I'm very proud of myself! It's an incredibly big deal, I feel like a party should be thrown. It's been.............I don't know how long since last I hiked, and I think it showed just a little bit as my huffing and puffing gave the big bad wold a run for his money. The majority of the time I hiked I couldn't help but think about the gossip that would follow, I mean sick people don't hike do they? and oh how much better I must be feeling now that I'm hiking. It's been bad enough not looking as sick as I feel but, oh the scandal of hiking! LOL. 

All that comes to mind is the quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”― Albert Einstein. I'm having a fish-being-judged-by-how-well-it-climbs-trees-week....do other people have those?

The thing about a fish climbing a tree is that it is not a probable thing. Thus if it does it wasn't it may not come down once it is up, or it may not do it again. Or in my case it may have been told that it probably couldn't climb the tree at all.

~ElysiaB

Down the Rabbit Hole

Tomorrow I will go to the Naturalpath clinic and see my doctor. He will ask me if I want to do tests 6050 and 5085....and I will answer....?

He will reiterate a lot of information at me about the state of my ever decreasing health, we will discuss treatment options based on weather or not I do the tests. And I will sit stressed over the cost of these tests and how they will effect my future. I thought if perhaps I ignored them, they'd go away...nope. I thought if I set up crowdfunding perhaps they'd be funded by the gererousity of the public, which would take the stress off of me, it did not happen. I thought if I pretend I was okay I wouldn't have to worry over tests...I could not pretend to be okay at the same time as I run to the nearest washroom to be sick. Thus my options are dwindling as always, I can ignore them no more. The truth is the options he will give me tomorrow will not compare to my actual and very real options, which are: 

A) I do the $1500 dollar blood tests and fallback a semester because we can't afford to do both. Yet this option gives me the truth in 3-4 weeks of whether or not I have lyme and parasites causing my illness. 

B) I abstain from the blood tests, and wait till September 19th at 12:10pm when I go into Women's Hospital and discuss with a new specialist how investigative surgery will go. Signing away consent form after consent form giving her the ability to perform surgery to explore what my insides look like in the off chance that they could actually visually see what is causing my ailments.   

Seems like if I got the tests now I could find out the answers in time to know if I have lyme and treat it without needing the investigative surgery. I don't want surgery, I desperately don't won't surgery. Being drugged and cut open to further someones research in the off chance that something could be found does not sound like fun to me. Yet, option A of blood tests is too expensive, and we can't afford it. We already pay over $200 a month towards medical expensive (prescribed drugs, treatments, and specialist visits), I really don't want to lose another semester of school because I'm already 2 years behind where I should be in this bachelors degree. I've researched the blood tests in hopes that family and friends might help us with the cost but sheepishly I am having a very hard time asking anyone for help. These options don't seem like options to me they seem like death sentences. I do the tests I push myself back in school, yet find out answers and begin the choices between painful treatment options to cure my pain. I do the surgery and take a leap into the unknown will they find something maybe, can I handle the pain of healing from surgery and depression of no answers if nothing is to be found again? I don't know. All I know is I'm scared. I'm scared of always being in so much pain for so long and never knowing why. I feel like I have to jump down the rabbit hole in the pursuit of all my options because I can not sit here in pain and do nothing. I want to try to get the blood tests done, and have answers as well as know whether or not I should continue on with the surgery? while having high hopes of continuing with school come September.  

As far as options go I have set up a number of crowd funding options on here to try and cover the costs of the blood tests on GoGetFunding and IndieGoGo. As well as a facebook group that has paypal capabilities. I am not good at asking for help and so I'm not asking for your help I'm simply asking for a chance at hope.

~ElysiaB

Artsy Fartsy

So today I feel accomplished! I cleaned the bathroom, cleaned out the fridge, did dishes, and cut up all the veggies and other stuff into bite sized pieces for snacks or just to have on hand chopped up ready to be thrown into a meal. After that I spent two hours reading a textbook on Addictions.

Amazing fact of the day, go figure it's from my textbook, "In Canada, nine out of ten violent crimes are committed under the influence of alcohol and/or other illegal drugs."(from Dying for a Drink, by Anderson Spickard Jr.,MC and Barbara R. Thompson) That just makes you think, wow what if no one did those things would violent crime rates drop to only that one out of ten that were not using a substance.

After I finished reading textbooks I took a break to paint, I found watercolors in a box I was unpacking and realized, I always paint in oil for the bold colors of acrylic for the definition, but what the heck, lets try watercolor! I'm not gonna post how that went, it looks like a two year old got a hold of the paints so instead I'll post so better paintings I've done.  hope you like them :)

So do not compare my art to the bellow awesomeness. lol. the following pictures are just a few I found either amusing or really liked :) 

I wish this wall was close by, how cool would that be! I heard in a German class I took that people out there do cool art on walls like this all the time, and I think that's just the coolest thing it would make life a bit more surreal. I think art is more emotive, it's like everything the person was feeling at that moment right there, in front of you, its profound in it's own way of being an expression. I love that about art, even though in that moment that your painting it means one thing to you and, then a year, or so late someone else sees it and it brings up different feelings for them. Just so cool, how were made with creative streaks in us :)

~ElysiaB

Comments are very Welcome :)

Midterm morning delight

Upon waking up I rushed, rushed, rushed, to get to class on time for 8 as class always starts at 8. I arrive with my precious Tim Horton's coffee (french vanilla with 1/4 coffee), in hand and sit down in my class room. I look around its silent, theres only two other student in the room and no teacher and it's like 2 minutes to 8AM. I'm going whaaaaatttt???is this some bad joke????Okay I'm thinking mabey everyone's late cause they're normally late cause unlike me, who wakes up an hour early, so I can get ready early and eat and then, drives a whole 15 minutes to get to class on time. They just walk five steps from their bedroom (dorm) to the classroom. a whole building away. 

I know I sound a bit like I'm making a big deal outta nothing cause well I am. The truth is I love the luxury of space and freedom and commuting gives me all that and more! LOL more as in I have a basement suite vs. a dorm, a hubby as my room mate vs. another girl I don't know. And a bit of quiet vs. chaos. For me it's great, my thyroid thanks me. Cause the less stress means the less pain, and sick days. YAY.

Any who sorry for the side track, So back to the midterm I'm sitting in class going WHHHAaaattttt??? I go to the lobby check my mailbox thinking may be there's a notice...but no shaa-bang. Only old notices that my mail box buddy (giving him the benifit of the doubt) forgot to throw out. Although when I fill through them I see that apparently I came an hour early to the exam room. Dang. SO I go back and relax it was kinda nice... I kinda enjoyed it... I played Angry Birds on my iphone...it was awesome! 

When the students and professor arrived and we finally got to writing this thing I went through my method of test taking:

1. read the test instructions and questions (seeing that they are all essay questions I proceed to 2.)

2. write in point form all the notes to the essay questions ( to help my memory, so that when I come back I can review them and then write an essay with all the points, saves you from the chance of forgetting everything you studied about essay #4 cause You were too focused writing essay #1, 2, and 3...)

3. I write out each essay while afterward making sure I got all the points that I jotted down from 2. 

I finished three essays in an hour and a half and got home early yay. 

ElysiaB 

Question of the day: Whats your most awkward exam writing experience? Comment  your answers below and I will repost the top ones 

Chin up butter cup

Dorothy Thompson, said, “Only when we are no longer afraid do we begin to live.” I wish I was no longer afraid of making decisions, especially the big life changing ones like how old do I want to be when I have kids, What career choice will work best with our lives, and how will we afford things. I don't know, I don't know, and please can we talk about these later, or can I think about that and get back to you,... at this moment in time is the best answers I can give. Yet, I know I have to keep going, life doesn't stop for disorders and if I stop moving forward I end up being like a rock in a flowing river. The water of life will flow around past me, and essentially not deciding on anything and standing still is action through inaction. So, I am taking this reading week, break-time to think things through more, research ideas, draw up spreadsheets, and pro's and con's lists and perhaps even come to some conclusions. (I hope!) The thing that holds me back from making these decisions is being afraid of my disorders effects on my life. I have no control over food, sleep patterns, muscles sometimes, pain levels, energy levels, anything really. And honestly it's been really really hard. I don't know what the plan is for my life, I don't know what tomorrow will bring, but I know each day I wake up and see this painting (below) which says, "Good morning, This is God! I will be handling all of your problems today, and I will not need your help, so have a good day!" I can't help but smile because, I know he goes before me, and with me through each step I take. 

I have a disorder that is noticeable and reminds me daily that most of my choices are not my own, I can't plan or choose to be well enough for school, or life, but I can choose how I will react to the events that happen. Throughout these struggles the past few months I can see growth in being more honest with myself and others. Its hard to let people see you for how you are, for some reason we all try to look so perfect. Yet, in truth  some days are awesome and I'm happy, and there are other days when I'm just trying to take deep breathes and hold it all together, it's life. Disorder or not no one has it all together, we each have struggles and yet we plan ahead and state that this is our plan for life, to be a doctor, a photographer, or pastor; we're going to have a certain number of children and yet no one really knows how life is going to go except God. In that way I feel less afraid of having no control over my disorder, and circumstances because I am at peace in his hands. 

When I was a little girl I would stay up late under the covers reading the book of Proverbs because I wanted to be wise like solomon. I wanted to know what was the wisest thing to do and here I sit still wanting to know. The uncertainty of neuropathic pain and why one drug works over another seems highly undiscovered so far, and so I am on the strongest pain medications they can give me to treat the neuropathic and fibromyalgia pains. I worry that my liver may become to damaged from medications, or that I won't be able to keep going, that I'll start losing everything I'm fighting so hard to keep. I lost a course already, and that really sucked cause I know I tried my hardest, yet I know also that I need not worry as each day has been foreseen and each day I enter with a very big God.

 I wonder what he's up to. 


~ElysiaB

“God allows us to experience the low points of life in order to teach us lessons we could not learn in any other way. The way we learn those lessons is not to deny the feelings but to find the meanings underlying them.”

Stanley Lindquist quotes

“I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”

Mother Teresa of Calcutta quotes

mayday

As I read this book review that mainly feature's the author Lous Heshbusiu's journey, I feel as though I am all too familiar, with all that she reports chronic illness to be.  Perhaps it is because of the raw state of pain at which I sit in bed with today, or because her account of chronic pain is so true for so many. David Biro wrote the review based on her 2009 book, Inside Chronic Pain: An Intimate and Critical Account. When your dealing with a disorder that no one can see, or fully understand, it is so comforting to read a positive account from another who has gone through a similar experience. It's as rare as finding gold, to come across not only someone who's felt as you do but, someone who has written about it.     

Despite its morbid subject matter, there are ways to turn illness narratives into compelling reads. One can ratchet up the drama and suspense (e.g. Frigyes Karinthy’s A Journey Round My Skull and Jill Bolte Taylor’s My Stroke of Insight). One can fill the narrative with deep insights (Oliver Sacks’s, A Leg to Stand On and Arthur Frank’s At the Will of the Body). Or one can aim for the lyrical brilliance of poetry (Anatole Broyard, Intoxicated by My Illness and Sarah Manguso, Two Kinds of Decay). In her new book, Inside Chronic Pain: An Intimate and Critical Account, however, Lous Heshusius chooses none of these strategies. Unlike Tennessee William’s Blanche Dubois, she will have neither romance nor magic; she wants to tell it like it is.
A courageous tack, clearly, since the reality is downright uncompelling and ugly. In a moment of inattention, the Dutch-born education professor now living in Canada was blindsided by another car as she pulled away from a stop sign. In that moment she exits a rewarding life, professionally and personally, and enters what she imagines to be ‘Hell’: constant, often paralyzing pain; endless visits to doctors and other health care providers (over 60 in all) who offer few answers and at times make the pain worse; and increasing loneliness as her world retracts inward and she becomes progressively isolated from friends and family.
This new life has lasted 11 years so far, she tells us in her memoir, and is still going. The living-hell of chronic pain is not something anyone would willingly choose to enter, even perhaps vicariously as a reader. It corresponds to what Arthur Frank (1995) termed a chaos narrative of illness. As opposed to the more comforting restitution narratives, such tales offer no happy endings or redemption, only darkness and stasis, a life resistant to meaning that will never get better. No wonder that others prefer to keep their distance. At a dinner party while Heshusius experiences a flaring of pain and could barely hold herself upright, everyone pretends nothing is wrong, even Heshusius herself: ‘We all took part in excluding me.’ The reality is just too painful to acknowledge. 

I think sometimes it's easiest, to pretend nothings wrong because the bitter truth of how you actually feel is sometime to hard for words to tell. Like right now, it's easier to type feelings to a blank page, than to go out tonight and actually say how I really feel. Some times it's just as simple as not wanting to hear the truth, myself, apart from telling another person. I find theres a large difference from being able to sit in bed, and go through the pain rather than speaking about it. Yet, not speaking about it and not having anything else new to say create a void between the person in pain and everyone else. That's a void I must admit I have trouble with, sometimes it feels painstaking trying to connect with another person, especially when I already feel alienated by the pain. 

And yet this is precisely why Heshusius’s book is so important. I used to think it was just doctors who turned their backs on patients they could no longer ‘help’. But the problem is much bigger, involving society as a whole, particularly in the West. As Susan Sontag (1978) noted a generation ago, the healthy will do everything they can to keep ‘the night side’ of life at bay. We are so obsessed with youth, health, and progress that we have no time for (or interest in) age, illness, and death. Yet for those who can’t escape the night side’s hellish precincts, the prevailing mindset is toxic. Pain by its very nature is a subjective, private affair. It’s difficult to think about, let alone communicate to others because its content is imperceptible and elusive. As such, it emphasizes the separateness between people (Biro, 2010). The problem becomes even worse, however, for patients like Heshusius in which there is no visible wound or lesion on a CAT scan. Now the issue is not merely one of unsharability (which is bad enough) but also unbelievabilty. How can someone possibly be in such severe pain when there is no tissue damage, no reason for it? The result is an echoing chamber of pain. Doctors, all but a few pain specialists, don’t have adequate training and experience, as Dr Scott Fishman notes in his excellent clinical commentary at the end of the book. When their materialist paradigm is turned on its head (pain without a physical source or without a fixable source), doctors are stymied and tend to prescribe medication indiscriminately or refer patients somewhere else, prolonging the endless cycle of suffering. Colleagues, friends, and family members, they too are often ill-equipped and skeptical. And even when they try to understand, their imaginative powers typically come up short – ‘What do you do all day?’ is a question that Heshusius is asked over and over again. Inevitably, the need to turn away is felt by the sufferer herself. Looking at an old photo one day, Heshusius is filled with grief: ‘I like this woman. I want to be her. How did she slip through my feelings?’ (p. 26) For many chronic pain patients like Heshusius, the alienation from others and from oneself, coupled with the belief that the pain will last forever, leads to a desire to end life – ‘How often have I wished I could lie down and simply die.’ (p. 3) Heshusius cites a recent article in the medical literature showing that among chronic illnesses, chronic pain is the second major cause of suicide after bipolar disorder, and ahead of depression and psychotic disorders.

"What do you do all day?" is too common a question, that the sufferer feels obligated to fulfil with productive events. Yet, I doubt an expectable answer is  "I dealt with pain all day!"  but it is the honest one, for most. The kind of pain that you often compare to wounds from weapon, stabbing pains, electric live wire shooting pains, throbbing pains, burning pains...etc. That is what I deal with all day, sure I try to be productive too, read a book, knit, do chores, exercise. But if I have done nothing but lay in bed, please excuse the lack of productivity. As it is because, it was all I could do to keep myself from going into the ER and begging to be admitted. 


As I read those last few lines of the review it resonates within me. Recently, the leader of my old small group from my youth days, posted pictures on facebook from when our group was younger -- I find myself looking at old pictures and it's like I travel back to those feelings of although less energy still energy that I had. I see that girl in the photo and she looks like a different person, that only resembles me. I like her! I want to be her again! With friends and energy, always having invitations to go out and have fun. I miss that girl, because slowly somehow I lost her, as I lost invites, as I lost touch with friends, as I faded in to the background. The grief of losing who I was, or wanted to be, does not feel past. But, as losing someone you were close too, their memory is always there. It's hard to be okay, with something that is not okay. The feelings are as hard as the pain, and it's maddening. 

Thankfully Heshusius doesn’t take this route and manages to find some measure of relief from pain which she desires to share with others. She urges her fellow sufferers to take an active role in their well-being – by not accepting what a doctor tells you, by willing you to keep changing doctors until you find the right one, and by doing your own research even when it leads down unconventional routes. This approach led Heshusius to prolotherapy, which though far from a cure, and certainly not a universal one, has helped her considerably. In addition, chronic pain patients often can no longer count on the old ways of finding pleasure and hope; since the past is gone and the future bleak, they must focus more on the present:‘here’ is the only place where I can really be. ‘This is it.’ Only this. Now. This pain above my left eye. This thought. This fear. The beauty of the music. The softness of this fur purring against me. The steel in my neck. This lying awake. (p. 39) Finally, in a world that makes no sense, patients must learn to create some sense and purpose for themselves. Heshusius does this by writing down her thoughts and later formalizing them in a story – a story that will hopefully contribute to the eventual lessening of pain as it reaches out to other sufferers (you are not alone) and informs the healthy (this is what we do all day and your ignorance and neglect makes our existence all the more intolerable). The Mayday Fund recently reported that there are now 70 million chronic pain patients living in the United States. Yet despite the alarming number, these sufferers and their disease are almost as invisible as their pain: in the genre of illness narratives, in medical school curricula, and in research funding. Let’s hope Heshusius’s courageous and empowering voice helps change that.

Sometimes it may seem silly that we do our own research into our symptoms as it is a doctors job, but I agree that it is important. In our technology era, often doctors are undereducated on new medical advances as they are already pressured for time and over booked. Looking into our own symptoms helps us find new resources and possible conclusions. The past is gone and the future does look bleak, so this last point is important, to live day by day. Our day's are all different, as pain does not schedule when it's going to join you.  Thus, it's the joy in the little things that we must relish as others who are healthy do not take time for them, when they can be what makes my day. When the sun is shining it is a moment to enjoy, and take note of, when this purring warm lump in my lap sits with me it's also a bright comforting moment to smile about. 

~ElysiaB

Book review http://www.davidbiro.com/media/HEA364709_Rev2Biro.pdf

Lous Heshusius, Inside Chronic Pain: An Intimate and Critical Account, Cornell University Press, 2009; 167 pp.: 978080149

Reviewed by: David Biro, State University of New York, USA

Health XX(X) 1–3 © The Author(s) 2010 Reprints and permission: sagepub. co.uk/journalsPermissions.nav DOI: 10.1177/1363459310364709 http://hea.sagepub.com

References

Biro DE (2010) The Language of Pain. New York: WW Norton. Broyard (1992) Intoxicated by My Illness. New York: Fawcett Columbine. Frank AW (1995) The Wounded Storyteller. Chicago, IL: University of Chicago Press. Frank AW (2002) At the Will of the Body. New York: Mariner Books. Karinthy F (1992) A Journey Around My Skull. Budapest, Hungary: Corvina Books. Manguso S (2008) Two Kinds of Decay. New York: Farrar, Strauss & Giroux. Mayday Fund Report (2009) A Call to Revolutionize Chronic Pain Care in America: An Opportunity

in Health Care Reform. www.painreport.org. Sacks O (1998) A Leg to Stand On. New York: Touchstone. Sontag S (1978) Illness as Metaphor. New York: Farrar, Strauss & Giroux. Taylor JB (2006) My Stroke of Insight. New York: Plume.

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