Insanity vs. Inanity

This is just ludicrous. I didn’t even realize the amount of stuff I was polluting my body with. I worked so hard to remain as objective as possible through–everything–that I stopped caring about being poked and prodded and just started to think of my body as a (broken) machine and was a compliant patient. Through it all. Now I find myself no longer beholden to Big Pharma. For now; the truth is, at the moment, there is nothing to modify the natural course of this disease. My disease. Realistically, I will likely need to resume treatment. But not tomorrow… Insanity meets inanity in this post!

 

I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique biochemical footprint.

My name is Andrew Durso, I am 30 years old. In 2007, I was diagnosed with a chronic, lifelong illness—Multiple Sclerosis (MS). I was counseled by my Neurologist to choose between 4 medications— Copaxone, Rebif, Avonex, and Betaseron (the only available first-options at the time, known as the C.R.A.B. drugs). What did I know of such things? My decision was thus based entirely on the method of administration and my relative comfort level with injecting myself. Thus, my options became: a subcutaneous injection (known as ‘SQ’, frequently referred to as ‘Sub-Q’, or under the skin) every day (Copaxone), a different Sub-Q injection 3 times a week,  an intramuscular (IM) injection once a week (Avonex), or a a subcutaneous (SQ) injection every other day (Betaseron).

I settled on Rebif. My disease progressed quickly. Within 8 months of my diagnosis, I was confined to a wheelchair. Six treatments and two surgeries later, the most incredible thing happened to me.

As of March 1, 2013, I have not consumed a single pharmaceutical product. I have instead been medicating exclusively with Medical Cannabis. I purchased a battery operated, portable vaporizer to facilitate consumption. I asked for and received a medical exemption to purchase, carry, and possess marijuana.

Please understand–I have a great job. I have an amazing family. I thought my days with pot were behind me. But this is no longer high school. It is a FACT that I am enjoying good health right now. Understand: I don’t want to get high. I’m sick and need to medicate.

I now consume Medical Cannabis for all that stuff that I was taking those 20 pills a day for. And, for me, it works.

 

 

Medcation History:

Prescribed:

-Baclofen – 10 mg tablrets 4 times daily (to control spasms, medical cannabis achieves the same effect)

-=Clonazepamn – 0.5mg pill 2 times daily (for tremor control – medical cannabis achieves the same effect)

Detrol L.A. – 4 mg capsule 2 times daily (to calm my overactive bladder muscles – medical cannabis achieves the same effect)

Treatments:

Rebif – 44mcg injected 3 times weekly (interferon 1a)

Tysabri – infused in a infusion centre. Dosage is based on weight, every 4 weeks

Mitoxantrone – chemotherapy1 agent used primarily to treat leukemia, 1.5L infused at hospital every 4 weeks.

Cyclophosphamide – chemotherapy1 agent used to treat various Cancers, 1.25 infused every 4 weeks for 3 years with future regimen of ever 8 weeks.

-Current intent is to resume Tysabri.

Surgeries:

-CCSVI venoplasty

-Open brain surgery and installation of Neurostimulator for tremor control

Over-the-counter (OTC):

3.1,000 IU Vitamin D twice daily

4.350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily

7.1 horse-pill sized multivitamin

8.Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily

 

1                   Chemotherapy always indicated or use with steroids (1L of Solu-Medrol delivered via infusion and unknown quantity of Zofran (anti-nausea drug delivered via infusion.

Andrew Durso
Vice President
Tristan Williams MS Foundation (TWMSF)

Resources:

Neurology-2003-Goodin-1, obtained from http://www.neurology.org/content/61/10/1332.full.pdf‎
MS Society of Canada_ available at http://www.mssoiety.ca

 

 

 

 

 

 

 

 

The Panel

Something more universal; anybody, with or without MS, may be able to relate. It starts for me with my own personal MonSter. It is the cause behind much grief. It is equally cause for much celebration—it’s simply question of perspective. Grief, however, for the implied reason–I have a neurological disease. I’ve got a problem you can liken to electrical wiring. The wires in THE PANEL (my brain) are no longer properly insulated (the insolation around nerve is done by this wonderful, self-replicating fatty substance known as myelin).

The result is THE PANEL (my brain), with DAMAGED INSULATION (myelin), is trying to complete a circuit that that is missing a crucial link, and is thus doomed to fail. Improper INSULATION (myelin) to the wiring in THE PANEL (my brain) hinders not only the dispatching (COMING) but also the reply (GOING) of any piece of data processed by your PANEL (your brain). And the time it takes to squirt an ELECTRICAL SIGNAL (synapse) through that gooey, slimy layer of INSULATION (myelin) to the right part of THE PANEL (my brain) is referred to as latency. Improper INSULATION (myelin) becomes a MonStrous fire hazard.  I’ve  sauntered out alive each and every time, but only after I blow more taxpayer dollars by calling the FIRE DEPARTMENT (corticosteroids—while I personally respond extremely well to and do not suffer any of the side-effects associated  with turning your adrenal glands on overdrive via some external mechanism, in this case medications known as Solu-Medrol (delivered intravenously) or Prednisone, its tablet counterpart—dispensed in quantities of 5 mg  as well as 50 mg—for those times the FIRE DEPARTMENT (corticosteroids) needs to be called in to save the day.

 

Because of this disruption to my neural network by this stupid, fatty substance known as myelin, I had to call the stupid FIRE DEPARTMENT (corticosteroids–I have them on speed dial).  and only once I’m EVACUATED (remission), am I able to assess the damage. There’s no telling HOW MANY (Multiple) SCARS (Scleroses, or Sclerosis when pertaining to MS) will be left behind. The most amazing bio-electrical machine is your body; it’s neither finicky nor selective like the Marines and has no problem leaving a man behind. THE  PANEL (my brain) quickly assesses and notes any discontinuities, overwriting or rerouting the original, projected path and making necessary amendments what is the greatest ally you will ever have, your brain. As with most naturally occurring phenomenon, it takes the path of least resistance. Your PANEL (brain) and mine are wired the exact same. The cause of my problem is that disruption of the WIRING (synapses) to MY PANEL (my brain). Once THE FIREMEN (Corticosteroids) are finished extinguishing the blaze, I normally emerge from the FIREunscathed. But there is no telling what may be damaged or lost:

“Higher early relapse frequencies (FIRES) and shorter first inter-attack intervals (a great deal of FIRE, back-to-back and in need of an endless string of FIREMEN) herald more rapid deterioration via interaction with the neurodegeneration (I don’t like using the word, but it is the ultimate effect–death; while many links in this stupendous bio-electric machine can regenerate, that silly fatty tissue around my nerve endings, once victim to a stray burst from that improperly INSULATED (myelin) PANEL (my brain) is left unable to regenerate tissue which was BADLY SCARRED (Sclerosis). There are a number of ongoing studies investigating myelin and the mechanism your body uses—my limited understanding is that it has something to do with oligodendrocytes–innately, with neither your attentiveness nor your focus, to regenerate that hooey-gooey, slimy, INSULATION (myelin) around your PANEL (brain) and EVERY CONNECTION (this is represented in everything you do) in your HOME (your body).

And that’s what I need to submit to The Gazette or start going to Elementary Schools and tell the kids this pretty neat story about Electric Panels, Firemen, and how they saved me. More than once…

————————————————————————————————————————————And now here’s something you’ll really dislike:

The above was a perceptive post; it is bibliographical recount of the experiences I’ve undergone since my diagnosis with relapsing, remitting Multiple Sclerosis (MS) in May 2007. I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique PANEL (brain).l.

Do not take this medication if you:

–          are allergic to prednisone or any ingredients of this medication

–          have an internal fungal infection

–          will be given a live virus vaccine (e.g., measles, mumps, rubella, yellow fever,  BCG)and are taking large immunosuppressive doses of prednisone

The side effects listed below are not experienced by everyone who takes this medication. If you are concerned about side effects, discuss the risks and benefits of this medication with your doctor. Side-effects may include:

–          acne (was on Minocyclin at the time, so no adverse reaction)

–          diarrhea (for me, this is kind-of an unfortunately messy good thing)

–          constipation (this is a reality I deal with by doing something as simple as simple as eating 2-3 prunes a day, maybe pair it with a daily softener which has no detrimental long term effects)

–          increased appetite (I can more than use the extra calories. Remember, I was dignosed May 1st 2007, I was in a wheelchair by January 2010.  The first 32 months with my MonSter was just relapse, after relapse. After relapse! Steroids brought me back, from what I felt, but I suppose I’ll never know if all those tablets of prednisone (25 x 50 mg, 1,250 mg, or 1.25 GRAMS every other day for 10 days- This went for a month. During the 4 weeks my cortisol levels were unnaturally high, much like myself, they gave me the capacity, determination, and plain old-fashioned grit where:

  1. I was able to work full time
  2. I was still able to shower and shave autonomously
  3. I was able to lug my laundry down a flight of stairs and able to fold and sort everything in a typical, neurotic Durso-Gabriel way
  4. I was euphorically happy (that is a side effect the NHS neglected to mention—Euphoria. It can kind-of crack you out. It’s kind of like busting a HUGE rail. The nice part is that during my love affair with Prednisone, Doctors at that juncture prescribed a taper dose. This lessened the shock to my system—as the artificial Cortisol clears my system, my adrenal glandsfire back up and maintain my body’s cortisol level. This is no longer in practice thanks, in part, to crack heads like me…

–          increased sweating (n/a to me, may have been a secondary effect of the Minocyclin)

–          menstrual problems (n/a)

–          nausea (no, no—nothing short of chemotherapy does that to me)

–          reddish-purple lines on arms, face, groin, legs, or trunk (nobody has ever said anything)

–          thin, shiny skin (again, n/a)

–          trouble sleeping (it’s called Temazepam)

–          unusual increase in hair growth (it’s as good as gone on my dome!)

–          premature bone decalcification (this is the big fat ugly issue with artificially enhancing your adrenal functioning. I have spoken about this time and time again. No doctor would ever agree to my continued usage. It’s this wicked-amazing pill that eliminates a broad majority of my MS-related symptoms. I can supplement with all the vitamin D and Calcium I’d like, but I have been told by Mark Freidman himself: “They will kill you.”

 

This was a warning I took to heart. I have been undergoing my own personal trial of sorts. I felt I was just shoving pill after pill down my gizzard. They do not cost me anything thanks to ol’ Parker, so I was never reluctant to take them. Every day, I was taking:

  1. Detrol LA twice daily
  2. Minocyclin twice daily
  3. 1,000 IU Vitamin D twice daily
  4. 350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily
  5. 1 mg Clonazepam twice daily
  6. 10 mg of Baclofen 4 times daily
  7. 1 horse-pill sized multivitamin
  8. Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily
  9. I was taking 5 mg of folic acid twice daily due to an unusually low platelet count, which was my first WIN since beginning this experiment; it rose to a respectable 166 in my last complete-blood-count (CBC), well within the tolerance level for a second open brain surgery.
  10. 5 mg of Cialis daily while Malissa and I were dating—I discontinued it when I began this experiment, and will now never know whether this played into my fluctuating platelet count

 

Since March 1st, 20113, I have not consumed any pharmaceuticals beyond #7. I have instead asked for and received a medical exemption to purchase, carry, and possess marijuana. Look, I have a great job. I have an amazing family. I thought my days with pot were behind me. But I now consume it primarily for all that stuff that I was taking those 20 pills a day for. And, for me, it works. I invested in a portable vapourizer, which is a clean way to smoke.

Gimme a break, it’s not like “I was ripping the shit like it’s my motherf*cking last hit.” I invested in a portable vaporizer and this is the way I now medicate.

 

-A.D.

 

Resources:

 

http://www.urbandictionary.com/define.php?term=Bust%20a%20rail

http://www.canadianvitaminshop.com/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892939/

 

I love it when i WIN

For Ace Milner…

I love it when i WIN. Let me explain some quick concepts and tell you a lovely story about the WIN Strategy, where I learned what WINing is, and the methods I use to keep WINing. It comforts me enormously to write. A blank page is my personal retreat to compartmentalize and truly think.

Where on Earth did I learn something as obscure as the WIN Strategy? It may sound like one of many corporate strategies that shift frequently. It’s not. Parker taught me how to make it a way of life. Similar to everything else Parker Hannifin and my peers under their employment taught me, it was repeated. Again. And again. And again… This kind of indoctrination is precisely what I needed. I suppose I craved structure even in my youth.

the following is what has been playing on repeat in my mind since 2002.”The foundation of the Win Strategy formalized the idea that encouraging employees to take action and ownership in their work will enable us to improve our performance and achieve our goals.

Remember when I said I own my disease? If you missed it, see above. My peers and I were equally committed to fostering a clean and standardized workplace. We had a common goal–increasing efficiency. Parker challenged me to achieve this by rewarding me for anything, no matter how seemingly inconsequential, to expedite our arrival at our destination. The ultimate goal is the bottom line, and this is what Parker owns. From their corporate governance to the thick of the shipping bureau, the customer service desk, or the manufacturing floor, all follow the same line of thinking—if I can make my job easier (make more money for the company), why not do it (increase product flow from assembly to end-use hands, which results in better everything. Your product comes from manufacturing with more speed. Wait times decrease. Cash flow becomes invariably more fluid. And what does this wonderfully innovative and well-oiled machine create? A renewable energy source (or idea source) which comes not from some consulting company, but from the guy who spends his days running the machine, or the Order Desk worker getting reamed out by a client because they have open orders which  haven’t yet shipped. These are the people Parker empowers to improve performance.

And so, it was (and hopefully still is.)Sheer brilliance—when did asking the person who manufactures something how to make the process better become novel? Parker taught me much. University showed me to focus on the task at hand. All you need to do is open your eyes—it’s as simple as that. In what is an almost Jobsian (I haven’t been keeping up-to-date with my pop-culture knowledge—did I just make up a new word that pins the efficiency and creativity of Apple (I’m still and likely always will be a hater) onto the shoulder of Steve Jobs?) Regardless,, the indelible lessons learned over the course of my career are now serving me well. When I successfully navigate my way through the piecemeal setup in my bathroom and get into the shower autonomously, well folks, that’s a WIN.  When I get 6 loads of laundry done in a day (granted, it should never get that way—that’s where ownership comes in,) that’s a WIN. The fact that I have been off all pharmaceuticals since May is a huge WIN.  So Parker’s corporate mantra has been somewhat modified:

The foundation of the Win Strategy formalized the idea that encouraging employees to  (I must) take action and ownership in their work (everything I do—trust me, it’s all work) (it) will enable us (me)  to improve our (my) performance and achieve our (my) goals.”

The transformation of the philosophy behind everything Parker has been a tremendously beneficial thing for me, far as things go. It was only made possible when I paired everything Parker with University–I began to notice that ‘I was able to take pause, orient my thoughts, and work through a problem.  I owe just as much to two entry level University English classes as I do to Parker—they taught me business, school gave me focus, often an ability to see what is so blatantly obvious that it flew right by me. Notwithstanding, I have an overabundance of time to think. I have an affinity for obscurity—some ideas are good, some bad. As long as I keep trying, I will WIN.

Resources:

http://www.parker.com

Concessions

Before you begin this, bear in mind that in the end, all things are equal. “All living organisms have mechanisms to sense and respond to changes in their environments” – Young LR, Oman CM, Watt DGD, et al. (1984). “Spatial orientation in weightlessness and readaptation to Earth’s gravity”. Science 225: 205–208.

I have not at this point learned to dance. I mean dance, not the senseless jumping around and flailing of my imbs like back in what now feels like a separate life from the one I currently exist in. I’m smiling to myself because I was sort of given a unique opportunity—I have had many experiences throughout my youth as an able-bodied man. I have lived in Montreal and Calgary, I have had a driver’s license, I have owned a vehicle. I’ve held the same job since 2002. I have opened a bank account. I have applied for and received a line-of-credit as well as a credit card. I have had what I would like to think of as a successful dating career. Some say better to have loved and lost. To those adage-lovers, I say: “Are you kidding??” But through everything, I never learned to dance.

It is perched just out of reach in what is apparently a never-ending battle between the things that I have always wanted, and all those concessions which I must take into account under the “things I no longer have the physicality for. “ Still—I never learned to dance.

I am alright with wheeling onto the dance floor with very intention of doing what I have traditionally done…bust a proverbial move, as it were.

It grows wearisome, this never-ending game of keep away which  I have no choice but to play. Learning the most effective way to relegate myself to amending my traditional understanding of dancing Is just one more thing that I must adapt to. It doesn’t require much effort- I have always tried to just help people. I maintain this attitude to this very day. I suppose I have being brought up Parker to thank for this. I have no idea how many times we discussed identifying root causes of problems, advanced problem solving tactics, and watched as a fortune 500 company made concessions to keep our customers happy. Consider this a corporation of such stature making concessions to a Mom & Pop Shop! Did I ever take that lesson in, eh? Because it is that Mom & Pop Shop who pay the bills. I liken such a viscerally corporate entity making concessions to end-use account to me making concessions to my disease (any reading this who may be engaged in business practices with Parker may have noticed a comparison between my end-use accounts and my disease. I apologize for this. The fact that I have taken pause for even a second should show with the utmost clarity what kind of company Parker Hannifin is.

While I may have been forced redefine something as casual as dancing, it is brought to me in the only way that I would possibly make a concession such as this (words are very important to me—they always allowed for flexibility in my high-school years, which was always a pleasant change from the rigidity of Science.) The familiarity I have been building over a lifetime with all these words that I am now forced to redefine is difficult for me. It is a bitter pill that I must take–those definitions are comforting to me, but like everything they’re fleeting.

I’d like to say that I do not like the word handi-capable. I find the hybridization of these words (handicapped and capable) borderline offensive. I know that i am disabled. And I also know that I OWN MY DISEASE (in the words of one Jesse Pinkman: “bitch.”) My disease doesn’t own me. Instead, we have a 60/40 split. Trust me; I was left out of the negotiations.

I also know that the final truth is that I must respect my disease–otherwise, I pay the price. And just as it is with many things in this world, the price follows the societal trend and only increases with time.

But still, in the depth of experience that I have been amassing is all part & parcel to the person I am, love me or hate me. I suppose that in the end, whether I can dance is irrelevant. What all this writing has culminated in is the realization that I must concede. In parts of life beyond what I have known for a lifetime vis-à-vis the practical definition of words. And thus, I will adapt. It’s i. It’s in my nature. My professional background has fostered experience dealing with the most irate customer I have ever known—my illness. That’s it. There is so much seemingly grim finality when many are living with a chronic illness. I chose, therefore, to just think of it as another bad day at work.

With my most irate customer who persistently has me making concessions.

-A.D.

Resources:

Fatigue, sleepiness, and physical activity in patients with multiple sclerosis, Merkelbach S, Schulz H, Kölmel HW, Gora G, Klingelhöfer J, Dachsel R, Hoffmann F, Polzer U © 1984, Heinrich-Braun-Klinikum Zwickau, 08056, Zwickau, Germany. stefan.merkelbach@hbk-zwickau.de

Statistical data courtesy of StatsCan.

I hate it when i badtrip!

I am snickering silentlly to myself. As is typical in any adapted transport vehicle, we are all sitting in silence. A 50-year old couple is with the driver and I–a gentleman sitting in a wheelchair is strapped into the would-be passenger seat (though he doesn’t rock it like I do.) And again, as is typical, we’re all pissed off. The driver because he is now even more behind in his route. I am typically sympathetic to the drivers–there was a time while I had a driver’s license–but similarly to EVERYTHING that I enjoyed, be it people, places, or things, life wouldn’t ever consider giving me a break. So, despite the fact that he was already 30 minutes late for my pick up, his arrival was met with a clear apology on my behalf. The reality of my situation is that unless you live it EVERYDAY, you don’t really understand. It’s nobody’s fault. MS is a case-specific illness. One of the many problems that come with my MS is that it has left me incontinent. There are measures I employ to keep this out of the public eye (catheterization and wearing diapers). Neither system is flawless, and as such, I am subject to the occasional mishap. And so it was at the best possible moment–as I’m preparing to leave for my 30th birthday celebration–that I had my first mishap. I’m over the fact that I have been rendered incontinent by my MS. It nevertheless remains an awkward subject for most. So, screaming a profuse apology, I informed the (already upset) taxi driver that I was sorry but that I was in the midst of righting that mishap. Meanwhile, the other couple is understandably upset, as their appointment time is rapidly approaching. Lets recap real quick–1 p.o.’d driver, 1 p.o.’d couple, and me. The three of us are all upset–and the core of the issue is that all three of us are left simmering with NO ONE TO ASSIGN THE BLAME TO. People need to come to some resolution when things run amiss. But I can’t be blamed for my disease. The other couple isn’t to blame either. And the taxi driver is certainly not responsible for the almost 3rd world state of the roads in this city. Resolution? I wish–there is so much that I must leave unresolved–the fluctuations in my energy level have left me with no other choice but to adapt to the changing world around me while simultaneously adapting to changes brought on by my illness. I’m understandably tired. And now I’m tired and left with this problem that I see and can do nothing about.

-A.D

Just another victim of Regulation

Don’t get me wrong; regulation, particularly in the banking field, is a good thing. Regulation is why Canada fared so well in the massive financial crisis that essentially decimated the American economy. Regulation is why we don’t see people defaulting on the kinds of mortgages that were being handed to people who simply did not have the means of sustaining themselves financially–and it’s that regulation that is the reason; no Canadian bank would ever approve someone with such a high risk factor. This, much to my chagrin, is the result of proper enforcement and having the right checks and balances in place. Canada has a history of not being the most financially adventurous nation, and relies instead on pragmatism and the aforementioned regulatory framework to keep our books in the black. I’m proud to be Canadian–everyday. I’m proud because of that intrinsic regulatory framework. I’m proud that instead of being a nation more or less defined by the glaring inequality between the rich and poor, we take a more Socialistic stance; universal healthcare is number one for me on that list.

Granted, no system is perfect. I get that—something that should have been a very normal life- event for a young person, despite the fact that I’m living a life less ordinary, was rapidly moving out of my reach…

I struggle everyday with everything; I wake up only to discover that I continue to be paralyzed from the waist down. I’m lucky if I awoke dry, either way, next are my morning calisthenics. This starts as I make my first transfer of the day, reaching for my legs as I lift them out of bed. It continues as I finagle into  my chair, doing my best not to fall mid-transfer. I make my way to the shower (the eternally frustrating thing is that the shower is too small (they’re all mostly stand-up showers nowadays, not really the best for me.)

And that’s the crux of this post; I need to find a property that I can both rent and adapt. Rent  because that wonderfully Canadian regulatory framework has me setting off more bells and whistles than you could even begin to fathom. I would most certainly be approved for a mortgage, but only if I made a 20% downpament, and then +++, taxes, insurance, all those mortgage-related expenses. So option 1 is a bust. Owning is out, I wouldn’t really want to assume liability either; I don’t want to have worries about whether the building needs a new roof, or whatever. I don’t want the burdensome financial weight of being tied into a mortgag. Don’t forget; I’m on a disability benefit whose maximum payable ranges from $888.48 to $1,212.90. I think this wage is paid as a percentage of your last recorded salary. Needless to say–I’m no longer in that safe-zone that I previously enjoyed. No, I’m surely better off renting. As far as my options go.

Never would I have imagined this very real and frequently recurring life change–moving–would become so inexorably difficult. Difficult because I no longer occupy the same spatial relations which I spent years learning; nobody really has to THINK about the space and time occupied by your body. You just know…but what if you could no longer tell?

Enter proprioception; instead of doing something through touch , my eyesight must constantly be engaged. Take, for example, a late-night bathroom trip; historically, i would roll out of bed, go to the washroom, and be done with it. Now, all the lights come on–after having suffered from optic neuritis in both eyes, my low light level visual acuity, like everything else, has fallen victim to my illness and has been replaced by literal holes in my vision.. My LIFE  IS HARD. Not only had my life transformed over such a brief period of time, but I now had to learn everything anew.

I guess regulation is really intended to work FOR YOU. The reality is that this life is unenviable. As it is with many things in the grip of a lifelong illness such as MS, I can’t help but feeling nothing more than that infernal claw clutched around my throat; it’s no way to live at all. It’s really…exhausting. My energy level has already taken is  a  serious blow. And it continues to be pummeled in what, at this point in time, is only going to end in one of two ways. Think about it’s LOGICAL end– I’m not morbid enough to contemplate that story. And so, I FIGHT. Everyday. Because I have to. From the early morning to the very end of the day. Everyday. Forever.

And compounded by everything which you’ve just read is one additional inconvenience for me–the fact that I am just another victim of Regulation in Canada.

My 30th birthday is next week. My first trimester of life and it’s certainly been eventful, despite being unenviable. Soldiering on must be my way forward. Life’s not so terrible. I’m an Uncle twice over. I want those children to learn tolerance, acceptance, and (most difficultly) how important a good academic background is. It took me 30 years—hopefully they take my advice!

-A.D.

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.