I have never felt such a moment of relief and peace. So as anyone who follows me knows, I have a slew of health problems that have taken absolutely forever to begin to address and have often led to my ingestion of medication that more often than not gave terrible side effects. It has been a heart wrenching, emotionally taxing time for me and in the last year my fiancé too. Well, today for the irat time in a very long time I felt something incredible. Something indescribable: hope.

I had a trip to the ER last Monday with horrible pain in my lower abdomen, essentially where my ovary sits. They did every test they could without laprascopically taking a look and in the end said for me to se a gyno as I may have endometriosis. This was a hue shock as my aunt had it before having a hysterectomy in her 50s, and as a teen I had poor luck with my cycle (I bled way too much and too often). This led my other aunt to help me find a NaPro doctor (a doctor trained in the Creighton Model fertility tracking and natural progesterone therapy treatments). We found one and I made the call. Turns out it is a male who does it, but I made an appointment with a female he worked with. There was a bit of a mix up as she doesn’t do NaPro, but I decided to try it out anyway. I currently see an NP through my university clinic and it has been a slow and arduous journey, having a GP would be much faster.

Turns out she was a Dr forte military and did two years of residency or internal medicine (so treating all the people who had things wrong) and when she left the military her husband was posted to a town near Vancouver where she held a practice… A practice where he followed her patients and treated her patients for everything! They go to the ER, she gets called in, they get hospitalized, she follows them at the hospital, they have a baby, she delivers it! The only thing she didn’t do herself was psychiatry, but she worked very closely with the psychiatrists and has a good grip on emotional problems a well as physical. Now if that wasn’t good enough, she has spent the last four years learning about gluten and the effects of celiac disease and gluten intolerance, which she in turn teaches her patients. I having celiac find this a breath of fresh air like none other. But wait! There’s more! She doesn’t believe in prescribing medication unless she knows for a fact that it will have many more benefits than drawbacks, and teaches the Billings method of fertility tracking to work with her female clients for natural methods of birth control so that they better understand their cycle. I think the best part is that she takes the time the patient needs because she is time dyslexic (like me) so she doesn’t shoo away her clangs when the buzzer goes.

I was the second to last patient, the last being an infant so I let her deal with them so we would have extra time to talk. Not only dis she take me seriously, she actually wasn’t at all surprise by the slew of health crap I have accumulated because she has familiarized herself with the relationship between them all already! She ordered blood work and chart requisitions from my NP and specialists today and next time we will have something to work with.

I cried when she left the room to see to the infant and I was overwhelmed with a need to thank god because there is honestly no way that this could have worked out like it has otherwise. I’m already a pile of statistical anomalies, this is one that fit so absolutely perfectly that it could not have been an act of chance. It is honestly less likely than me winning the lottery several times.

I feel hope. For the first time it doesn’t feel like I am stuck in darkness with no way out. The pain doesn’t overwhelm me because I know I will get it resolved, because if anyone can resolve my problems it is her.

I never thought I would feel this type of conversion, and you can call me crazy all you’d like, this is the one time I wish everyone could be in my shoes. It just feels so good after so much bad.

Bad memory and fibro fog

So I’ve been having a fairly foggy day today as I have over exerted myself a bit more than usual over the weekend. I noticed a pattern as I observed the fact that my fibro fog has a direct correlation to my pain. When I am in pain, my mind becomes foggier and foggier. This fog is very different from the sensations one might get from being distracted by their pain. Unfortunately, this is one of those things where you won’t really grasp my meaning if you yourself down experience it.

So what? I get foggier when I’m in pain. Well, studies have been focusing more and more on the idea of body memory. It is a theory that much of your working memory is actually stored in your body with only a part of them being stored in your brain. If you ask any one who plays an instrument I am certain they could vouch for some kind of body memory. I personally play the flute, and I don’t actually think about what I am doing, my body does it automatically.

Now the next piece of my theory is based on recent findings that indicate a commonality between fibro sufferers: we all have an excess of a specific nerve type that had previously been understood to regulate blood flow at an autonomic level. I personally have not had a biopsy of my hand to see if I have elevated nerve endings, but the theory seems sound.

Put two and two together: what do you get when you have too many nerve endings sending funny signals and a body whose working memory is mostly found in and around those nerves? You would likely get distortions in your short term memory as your body failed to store the information of the day, which in essence describes fibro fog. I do of course need to make a distinction with my use of the term short term memory. In this instance I am using it to describe anything from immediate to a few weeks of information that the body would normally store and remember. If your body is forgetting things as they are happening or isn’t given the chance to even attempt to remember, then it comes as no surprise that you will feel foggy and confused and not remember what you ate for breakfast without forcing yourself to repeat the word “eggs” ten or more times to yourself.

This little bit of insight wont fix your fog, but maybe it will find its way to the right doctor who can really do something about it and help us fuzzybrained fibromites out.

And end to my migraines, I didn’t expect

I never thought I would say this, but I have happily and enthusiastically jumped onto the anti-hormonal contraception bandwagon. Why you ask? Because I have recently found it to be the source of my chronic migraines.

I started hormonal birth control at the age of sixteen for the regulation of my all too irregular menstrual cycle. At the worst time I experienced a cycle with 8days between bleeding. I was anemic, and my Doctor decided that the solution was The Pill. Over the years following I started getting horrible migraines, and at the age of 20 I was diagnosed with aura and switched from estrogen to progesterone. At the time I had went from a migraine a year to migraines every day. I’ve had migraines everyday since, that is to say until I had my IUD removed. The morning it was removed my head had been killing me, that is up until half an hour after it was removed. I have not had a migraine since. That is not to say that I don’t expect to eventually have a migraine, but for now they are significantly improved.

I have heard horror stories before about the side effects of hormonal birth control from friends and family but now that I have experienced the sighing breath of relief from my headaches, I won’t ever support the use of those hormonal therapies. Yes, they help some people. That doesn’t mean I have to like them or agree with their use anymore.

Chronic fatigue and exercise

Sometimes it feels like I am struggling in an endless battle.

I’ve been noticing some trends in myself lately with regards to my energy, pain and overall well being. For years I pushed myself through my chronic fatigue and never let myself fully relax. I got tired and cranky. I was in extreme amounts of pain and all the while I thought that was how everyone else felt- at the time I didn’t know any better. I thought that my fatigue was just being exhausted, but that everyone else felt pain all the time all over their bodies. I thought everyone saw fuzzy patches in their field of vision and got headaches after. I thought everyone had stomach problems.

Then I went through a long and strenuous diagnostic process and started to learn just how much of what I experienced was in fact *not* experienced by everyone else on a daily basis. It was terrifying. It didn’t stop me from continuing to push myself the way I had been. It didn’t change the fact that I felt that I *had* to operate like everyone else does whether I’ve got a different or harder time of it or not. I pushed and pushed and pushed. It got harder and harder and harder to keep up that pace. Then I introduced medication into the mix and in all honesty it made it worse. I tried everything to ignore the new symptoms that popped out as my body began to adjust to the chemicals now invading my system. I wasn’t any less fatigued…. And sometimes I was more.

I tried so hard to keep up the act of pretending I was fine, until it fell over the edge last October-november when I moved. There was so much to do, in the middle of a semester that I couldn’t remember a month of because of a bad reaction to medication where I was teaching dance twice a week… So I grew more overwhelmed than ever…

It was then that I had to make the decision to take the next semester off. I teach dance at a private school, so my Christmas holidays were four weeks long. I managed to do tons around the house, at my own pace, I house sat for my mom, and for the most part I was able to rest and actually start to sleep again… I felt it was time to gradually increase my activity levels again.

Dance started up again last week and in all honesty I regret my choice to keep teaching instead of truly taking the semester off for my health. I am in terrible amounts of pain, I am extremely fatigued to the point of losing strength and I feel like I am constantly moving through thick molasses.

My unofficial adopted aunt shared thus article with me recently and in all honesty it has shed some light on part of why I feel so crummy from my chronic fatigue.

It is a simple article, but it debunks much of the media’s recent wave of thought. I can tell you straight: when you have fatigue, increasing your activity level makes it worse. Although exercise is important, it is not what we need to cure or remedy fatigue. I’m not sure what we can use to remedy it truthfully, but I’m searching….

Oh and so that you know, I was 150lbs (of muscle with healthy fat content for a woman) from the age of 15 up until this past summer where I started a new medication that caused me to gain weight rapidly and I’m at 190lbs now. I am slightly overweight for my height and build but not by much. I eat a healthy gluten free diet, I don’t sit on my butt watching TV all day, if I’m at home I do things around the house, do art or crafting, clean or study and research. So when I say I’m afraid to do more cardio because it physically hurts me, its not because of my weight or because I’m lazy. It is because it actually causes pain in every region of my body to varying degrees–and I’m not talking about sore muscles either. I’m talking about mixed up signals in my pain receptors for what ever reason.

Saving face

Why is it that we stand behind the facade of well being, saving face at every turn? In many ways I agree that one must save face but it seems like we have lost the reason to do so. In many cultures the concept of saving face had left a permanent mark historically, setting a need and a reason that is culturally relevant. In our so called modern society these meanings, needs, and reasons have been muddled and confused leaving behind the dilapidated corpse of reasonable conduct. As if the clash of cultures melting into the mosaic of north america took pieces from each other without explanation and attempted to snuff out others.

I do not know of any time in hiour current time where it was unacceptable to be ill and speak of it as a natural fact of life. Yes, taboo and gossip followed such discourse, as it follows any topic that people do not fully understand. Saving face was rarely used in this context. Saving face was used in the context of masking emotional reactions for the sake of keeping interaction between people civil and cool. It was created to show self control even in the most outraging circumstances. It was taught with the intent of learning how to calmly address situations that would otherwise cause great emotional reactions. Usually it was used most to keep yourself from doing something stupid.

Somehow illness and physical ailment has been bundled up with this, leaving thousands of individuals suffering in secret silence with few attempts by those around them to understand and address the situation properly, gently. Instead of promoting positive thoughts our society actually trains us to be shameful of our inability to be healthy, as if it something that we caused ourselves– making ourselves look as stupid as if we were a 40 something year old throwing a tantrum over a coworker not sharing their chocolate chip cookies in front of the whole office and the big bosses, when that coworker had only brought one cookie to work that day.

Employers look at those with chronic health problems, or those who have gone through a traumatic time with serious medical conditions like they are less, even if that medical condition is under control. Instead of looking at the qualifications they see what they do not understand and turn away in disgust.

Bodies are seen as dough to be molded to our desires, controllable to every degree. Fad diets and thin models recounting their master weight loss routines. Healthy food and exercise for all, and if you don’t perform to these standards you are sub par.

I understand when you need to save face about your emotional state, but your health is the priority. Our bodies can be modeled to fit our desires, but more often than not we hit unexpected speed bumps that truly hinder that process. People should see that these speeds bumps happen, that no one is truly healthy and accept that they should not have to save face for their body. You can learn to control your emotions and keep from doing stupid things. Chronic  illness does not make you stupid, does not make you less and should not be hidden under the carpet like your dirty secret.

People need to learn that it is ok to talk about your health whether it is good or bad, and they mist equally learn to listen. It is those in good health that should save face when confronted with people who experience chronic illness, because it is their harsh words and lack of empathy that truly makes the fool of them.


An encroaching fog…

I feel like I was originally a bright picturesque rainbow scene, the wind blowing through a misty day just enough to create prisms everywhere, shedding amazing hues on everything the light could touch. I was a landscape of rolling hills, seas, desserts, and frozen paradise. I was the trees and the sky, the earth and the sun above. I had a vast driving fire burning fiercely and brightly.  And I knew what it looked like inside and out. Then life slowly took away my wind and the light mist turned to fog. Pieces of my landscape lost their colour and turned grey and dull. Yet, I remembered what others had seen in this picturesque scape so I let it seem like the grey didn’t exist. I let it seem like my light had not dimmed… Over time, piece after piece fell to the fog and I was left in the middle, a tiny dim flickering flame. No light left to pretend that the grey had not taken hold. No where to turn to pretend there was no fog. I feel like it consumes me. I know what it used to feel like to be driven and passionate, to want and desire to create and indulge in my imagination. The meadows in my mind are not peaceful but poisoned. My heart needs to heal, but I don’t know how. I can’t drive away the fog…

When does the cycle of medication stop?

I am really wondering where in life I am heading at this point, or why that actually matters to be truthful. I’ve started another medication for my migraines in hopes to prevent them, and like every medication I try the side effects are problematic. The primary side effect is to lower blood pressure which, under normal circumstances would actually be a beneficial side effect, but I already have low blood pressure. It was ok for the first few days, but I am finding myself more and more dizzy and tired from the medication accumulating in m system. My neurologist suggested I eat more salt, and take salts like magnesium… Which I’m already taking. So that advice was not do helpful. Next medication I try will be something new, but I can’t take beta blockers because of the fact that I’ve had to take an epipen… And after the next mystery medication is the use of Botox. Which happens to be incredibly expensive and not at all financially feasible…

So I am at a stand still while I either get side effects that interrupt my ability to live day to day life or the migraines they are supposed to prevent… And I won’t be on OSPD until sometime in the next three months, if my application is accepted. So I’m trying to focus on the good things going on like the move next week even though this helplessness feels overwhelming. Right now my ears are ringing, the lights are bright and I can’t focus properly, and for the last week my insomnia has been unrelenting. I feel distant from the world that society says is normal, and feel like an outcast in more ways than I have ever felt before because I cannot even provide for myself and rely on my partner– he is what keeps me grounded and happy right now, and I do not know where I would be without him. So in many ways Im luckier than others in similar positions as I am.

Crisis in the Capital: shooting at parliament

Today’s events in the National Capital of Canada have left a great many with a sense of fear and confusion unlike our city has seen. Usually if an incident occurs like a shooting it is in the news as an event related to gang or domestic violence, rarely are we the city to witness attacks in large crowded regions such as downtown in the later hours of the morning. We hear and see news about crises in other cities, provinces and territories, countries.

Ottawa is a quiet town in the guise of a city whose border increases through the accumulation of local townships and farmland that border the city proper. To that extent, we have a farm in the middle of the city: the experimental farm. The municipalities are separated by the Canal and the Ottawa River with a few lakes and a bay scattered here and there. The inhabitants are primarily government workers of various kinds with families and kids. No one expects that it will be them to experience fear and hardship, our country and city are safe- or as safe as any urban centre could be. But is this really the case? Today put that safety in question when the conservative caucus seemed to be the target of the shooting.

I won’t be one to spread stories of fear and say that we are no longer safe, but I will address the fact that our security was not on top of its game. Rumor has it the shooters were supporters of Isis, I cannot say whether it is the case or not but I can say that this speculation does seem sensible based on the target of the attack. Recently, the Conservative party stated their intent to reign in on immigration to Canada. This to makes sense to be cause enough for the chosen target if the intentions of Isis are to enter into Canada and take over the country from the inside. The attack on the soldier who sadly passed also coincides with Canada going to war.

I believe that fear is the goal of these attacks: fear that we could be harmed, fear that we could be attacked by anyone, fear that if even our most secure sites can be infiltrated then we without security have no safety. These tactics are only effective if we let them be. So I say that we stand strong, and instead of falling into panic we take that fear and be courageous. Our country was created in peace (relatively speaking), so we should make a point to keep it that way.

Poem: I am not lost

I hide myself away in hopes to lead astray
I fear that which I must keep inside
There are few within whom I confide
I am not lost

I struggle with my pains like many unseen chains
I am laden with so many scars
Each a lesson laid out like stars
I am not lost

I give into demons without inner reasons
I see the choices that I have made
These are the paths from which I have strayed
I am not lost

I am often unsure of being true and pure
I am far away from all my truth
Farther still from the misty-eyed youth
I am not lost

I choose to not stand tall and hide against the wall
I stay unseen from the world around
My inner voice to not make a sound
I am not lost