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

It seems I am finally able to write again…

I’ve begun to wonder what it is to live rather than exist. To be a contributing member of society. To have a role. To have some sense of achievable purpose. Lately I feel so detached from any of these concepts. I have a goal of my purpose, for which I keep on trying, yet I find myself feeling more and more detached and out of place from most aspects of life.

I should truly be putting these musing feelings into the context of the last few months of my life where I stopped writing. I was put on a medication to treat my chronicles migraine that had an unexpected chemical reaction in my system that led to depressive suicidal thoughts, and a personality change. Over the two months of taking this drug I noticed more and more that my mind was going places I didn’t understand. I was confused and disoriented mist of the time, with vertigo wracking at my sense of balance. I lost all communicative ability, aside from basic use of my linguistic faculties. My dyslexia was as if it were on steroids, constantly playing with my words and phrases. I grew short tempered and angry, constantly angry. I grew callous and unfeeling. I began to lose interest in my favorite things (my art) and as quickly as I would see an object I began to see that objects uses in a quick escape from my flesh. Running water became a drain for a quick nick in the body, my medication seemed like it would be easier to swallow all at once, stairs seemed like a quick trip, cars speeding wouldn’t be hard to miss.

I have been depressed before, but never did I allow myself to think about taking my life. I channelled my focus into pushing forward and wishing I could poor from existence itself, but I have been adamant in keeping a positive attitude no matter how much pain I’m in for the last two years… So these thoughts came at a shock. My anxiety was super charged and I had no ability to concentrate or remain at attention. I lost all sense of time and it felt as if I were remember days pass by in a single afternoon.nAt the end of the dose and as I came off of the medication I spent 23 out of 26 days with a migraine. I had three days of respite after having a nine day migraine treated at the hospital… It was followed by a ten day migraine before I went to get it treated again.

I’ve spent the last three weeks trying to relearn myself, relearn his to interact with other individuals… And I am at a loss still as to how to be genuine when what I thought was the core of me could be so easily changed… I know what I am, but as far as who… I am not certain I know what that means or why I should give myself that sense of meaning.

I continue in school, and I am teaching dance again while I wait to start disability support… But somehow I am farther away from feeling like I belong anywhere than I had ever thought possible. I am diving into the arms of my partner for support, but I still feel caught in my web of confusion and self doubt spun by the strange memories I have of those few months that will likely never feel like anything but truly lost time.

Poem: Forgotten Oasis

I stand in my castle over a barren land
I’ve tilled the soils and I’ve tried my hand
Yet toil as I may and push as I might
The desert before me remains only sand

I weep as I think upon days long ago
Where any grand flora could happily grow
So much could be done in this vast kingdom
Now there is naught left of me to show

To those who look on from far away
Would see a grand palace to where they could stray
My castle is strong and full of great beauty
An illusion for me to keep on come what may

Fooled by the beauty that you think must be
The shining facade is all that you see
No oasis is there behind those great walls
For a desert is all the remains inside me

Marginalized Medicine

Something I have been dealing  with for a very long time is the critical impact of marginalization and dehumanization of a patient in the modern practice of medicine. On a surface level, Doctors need to take away the factors of an individual’s life in order to perform their job when they need to diagnose and prescribe medicine but more often than not this leads to a complete lack of empathy and respect for the patient and their experiences. The patient becomes a piece of a statistic, another number in a chart. They become the best fitting description and are plopped into that category haphazardly, all risks of misdiagnosis set aside. The patient no longer becomes a person experiencing an ailment but a problem to be solved, and they lose a sense of humanity. It is no longer important to shed that insight to find the true cause of the problem because it is too difficult to find! We don’t have access to the resources to diagnose easily, we don’t have access to the resources to properly improve our healthcare system…. yet here we stand as patients ourselves, trapped within a system of impoverished information that leads to the over categorization of an individual’s experience.Now, some Doctors go so far as to be set in what they know, and from that our experiences as patients are meaningless. Those Doctors instill anxiety in their patients which in turn manifests as new medical problems, and so the cycle begins. We become trapped by the attitude of our medical worker; happy helpful individual’s give you hope, while those who doubt your experience provide a basis for fearing the medical field in general. 

The fear of not being taken seriously leaves you raw and angry when the Doctor brushes your worries or pains aside, and you are left feeling ashamed and scared of sharing your state of affairs with anyone; if the professionals won’t take you seriously, who will? For those with chronic illnesses, or those undergoing diagnostic procedures that feeling can leave you terrified and isolated. When the Doctor does not listen to your lived experience because it doesn’t match what this statistic says or that text states it to be it feels like you are somehow no longer important as a human, as an individual; it feels like the Doctor thinks that you no longer have the right to be experiencing what you are experiencing because you don’t fit the grid. Unfortunately, those precious stats are created because people have problems and enough of them exist to coalesce into a pattern, not the other way around. It almost seems as though the label you are given ends up meaning more than the experiences you go through in your day to day life. As if you giving your best isn’t good enough because it isn’t producing their results. You feel trapped not only by your chronic illness but by the people around you, society itself. You cannot perform to the standards set by the so-called higher power and for that you are marginalized and with little respect. You lose value. You become less.

 

This morning I finally went in to my Doctor to apply for the Access Service at my university as well as ODSP (Ontario Disability Support Program) and my feelings are very raw still because it did not go well. After a year of treating me for Fibromyalgia she questioned the diagnosis. I had been diagnosed by a different Doctor last summer because she was on Maternity leave, and there had been no question there, and she never questioned to medicate me… but when it came to social assistance I had to prove that this was my last resort by having a small emotional break down in front of her because she questioned the diagnosis. She conceded at the end on writing Fibromyalgia on my school form (it had been on last year’s) after I explained teary eyed and panicked that I have anxiety with Doctors and diagnoses as well as Doctors taking me seriously after my old family Doctor and my entire family spent the first 20 years of my life saying everything was in my head– I was diagnosed with very bad case of Celiac disease at the age of 20 after switching doctors. I explained how hard it was to have social interactions in general because of my celiac and fibro. My migraine medication and fibro medication combined make me linguistically incompetent orally so I am either constantly in pain or not socially capable to function in a job setting. I haven’t felt so horrible before… It was bad enough spending years of my life not knowing what was wrong with me, being patient X, then being given a life long sentence of fibromyalgia (which I can manage for school– just not school and work), but then I had to be told I was potentially led astray, when I still feel and experience everything every single day. 

I have not felt so dehumanized and isolated in a single instance, so easily. Cast aside like a piece of dust on the wall. “Oh, you’re quality of life can’t be that bad! You’re only 22″ Is all I was feeling in that conversation, whether that is what she thought or felt or not. 

-Penelope

 

PS. This is also happening after I had an unexpected Celiac reaction on Saturday Evening (when I had one on Wednesday) so it was painful enough that I was screaming and whimpering uncontrollably for over an hour at the worst parts and am still in quite a lot of pain from it…. 

Unreliable but trustworthy

Something I have been trying to make more sense out of is the difference between reliability and trust. Many people may think that it is the same thing, but I beg to differ. I believe that these two concepts, though similar, stand alone in meaning. To me, trust is a matter of truth while reliability is a matter of follow through, and you don’t necessarily need one to have the other.

I personally value both of these skills differently because within my personal context of life, I strive to be trustworthy and am but am very often unreliable. To keep your word, to tell the truth, be honest with yourself and with others is to be trustworthy. To show up, not cancel last minute, keep in communication, etc is to be reliable. I value reliability in communication much more than physical reliability because I understand that circumstances with arise where you may not be able to follow through with plans, but if you communicate that you have done your part.

Communicating consistently allows for a demonstration of respect, loyalty and importance for who ever you are planning with. In my circumstances, I can’t always follow through with plans, and I have come to accept that as a fact. This doesn’t make me happy, I am not forced to stop making plans, but I do have to maintain a realistic self-awareness all the time and communicate that where necessary. Because of this though, I consider myself unreliable. It is the times that my health issues are debilitating, where I have no control over the situation, that I really consider myself unreliable. There is nothing I can do at that moment in time, but that doesn’t change the impact on the people around me and the things I need to do.

On the other hand, I pride myself on being trustworthy. I am a listener by nature, and have always been there to offer an ear to listen, a shoulder to cry on and a hug to hold. I don’t give unnecessary advice, I don’t force my opinion on others. I don’t share what you tell me unless it is something that directly involves me and concerns me alone, at which point it is my information and I have a right to share with someone to keep myself sane. I talk to a very few people about the deepest parts of myself, but for the most part, everyone else gets the very surface and no one knows who said what to whom. I’m not a gossiper. I’m not there to pick drama and start a fight. In those actions I consider myself truthful, honest and therefore trustworthy…

But just because you can trust me doesn’t mean you can rely on me being around. I don’t usually run away and hide myself from social contact, though it does happen. I usually get swept up in the busy nature of adult life and time flies before I can’t even cast a second glance. Or more often I will be physically unable to be around, which is usually the cause of my disappearing and being a hermit, but I am up front and honest about that.

Trustworthiness and reliability are two very distinct skills and I honestly think that people need to start recognizing that and acknowledging that difference. It would save a lot of hardship and pain when people have to maneuver the expectations that are bestowed upon you at every turn and stage of life.

My thoughts on soul-mates

Sometimes all it takes to find yourself or the half you feel you are missing, is to find that missing piece. Now I’m not talking about that sweeping majestic romance that tears you off your feet and flings you into the thoughtless careless flight of puppy love, I’m talking about finding the partner that was meant for you. I personally do believe in the concept of soul-mates, that there is someone out there who is just right for you, but I don’t believe we all are given the opportunity to find them in our lifetime.

There are so many people on the earth that it is nearly impossible for everyone to find them, but I think that there are ways to tell whether you have the chance to at some point in your life. I’ve personally always had this instinctive gut feeling that there was someone out there for me. I knew I would find him, and I knew what I was looking for. I had a list of characteristics of his personality and basic physical features that I always knew were just right for me. I used to pretend that because someone displayed some of these character traits they must be the right one! I would focus so much on those traits that I would ignore the rest of my gut feelings that screamed “no! It isn’t right! Stop it! It won’t last!”. I wanted that person so badly that I would be certain in my impatience that he would just show up the next day so I could live my happily ever after….

Then I realized that I had been imposing that lost on all the wrong people, that I had been impatient and dumb about my romantic choices, and that I needed to take a break and stop looking. I looked so hard for so long that I didn’t know how to stop looking, but I figured it out by distancing myself from the idea of relationships and smothering my own heart. I knew that I would find someone right for me, but that knowledge gave me dangerous rose coloured glasses. Yet, as soon as I stomped on those glasses and looked out with clear vision, I was met in the most unlikely situation of finding him. Finding the man I had known was right for me.

We clicked and sparked like wildfire from the moment we met. A short conversation at a party led to exchanging Facebook info, and plenty of very riveting conversations. We had planned for an evening hanging out, but the closer I came to the night the more my heart fluttered at the thought– which I would promptly stomp on and repeat to myself “Stop it! You are not allowed to talk yourself into thinking he is the right one like all the other silly times you’ve done!!”…. It turned into a date as soon as the evening began. It was the first time I had met someone who understood me so easily and deeply, without any idea of what I had been through. I kept my thoughts in check and have stayed grounded and realistic though, and still my heart hasn’t faltered. We keep communication open, we talk about everything and plan together, we are both seriously committed to eachother and understand that to make this work takes effort. We understand that life will change us, and that we can’t know what will come, but the universe has seemingly sought out to ensure we have a solid foundation. Everything with my health has flared up worse than it has for a good two years; my fibromyalgia, my migraines, my celiac disease, medication failures, I went through drug withdrawal in the transition to new medication, sickness (bad RTI), and that’s the tip of the iceberg of what we’ve actually been through together already.

I can’t say that love is easy, that love makes things go away, that love fixes anything, but I can say that it makes it so you aren’t going through all those ups and downs of day to day life alone- and if you feel like you’re missing a part of yourself, can make you feel whole.