The Rules

I practically begged Dr. Patry, my diagnosing Neurologist of the Foothills Medical Centre in Calgary, Alberta, to put me on Tysabri. Honestly, it turned into my Mother and I pleading my case to be put on what was considered, at least in Dr. Patry’s esteem, the “…future of medication in MS.” This, in the end, was just not going to happen for me. Ever. Despite my pleas which were met with a gentle brush-off by Patry, Tysabri wound up evading me. This was way back in May 2007, prior to Health Canada making revisions to the way the medication was labelled, prior to a firm understanding of progressive multifocal Leukoencapolopathy (PML) and the role the JC Virus on the medication. This was to be my first exposure to “The Rules.” And so it began…

The first roadblock jumped up faster than a groundhog fleeing a snake. There was absolutely nothing I could do to make the stalwart (though not to be confused with dispassionate) Dr. Patry budge. His non-reaction to my request to be put on Tysabri was simply a learned response the very same rules that I must now follow. I understand that you are required to be on a first-line treatment prior to taking medication considered second line. I would imagine you can dumb the numbers down to classification system where medications with higher incident rates ultimately wind up more elusive. This is done for the safety of those taking said medication, but don’t be fooled for 1 second. Complications, risk of secondary infection, even death; every incident is recorded as dollar-hungry Pharma jumps to ammend whatever is required by Health Canada. Can’t fault a company for being reactive–their major investment in a drug is a HUGE moneymaker. I guess at some level, they do some strange good in a world where we have become ensnared in the “take-a-pill-to-make-it-stop” mentality because it’s truly “the path of least resistance. I’m certain proper diet, exercise, and rest are what will make my health better. i guess that’s where Ma steps in and always puts food in front of me. I think it moving back with her will help me moderate my 3.5 g a day habit…

And that’s it; to use the old adage, them’s the rules. And just a light sampling of the kind of backward-ass bureaucratic system I have to abide by in order for me to keep my options open. In the interim through, I’m doing my best to hang on to what measly scraps I have left of my health (enter: “le Melodrâme…”—it’s not as bad as that. Problems abound, problems surround. Is it any different for all of you “ambie’s” out there?)

I take solace in the realization that everyone’s got something weighing on them, and any time I can actually be with a group of my peers and I see them struggling with similar roadblocks in their lives… it cradles that semblance of normalcy I more oft dream about more than truly feel.

I’m spiraling…it happens! Psych 100 begins 30-September!

Remember kids; school first!

-A.D.

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4 thoughts on “The Rules

  1. Sususy says:

    Well, onward Andrew…Tysabri is pretty scary..maybe the things we know might not be so bad  Hope that you find something to help you Remember a lot of us travel with you, my friend  Love ya Ruth-Ann and Dan

    ________________________________

    • wakingseconds says:

      honestly… a good diet and 3.5 g of MJ a day, my disease is stable, my platelet counts have returned to normal, and the thrombocytopenia is no longer. It’s a darn plant, after all!

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