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 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

Now I’ve gone and done it!

90% of the problems I have are MS-related. It really is a brutal disease. Brutal because it can take something critical to your independence away, such as continence, mobility, vision, coordination, dexterity, strength, etc. etc,(or in my case, all of the above including a couple of etcetera’s) and leave you otherwise with THE APPEARANCE of good health. Brutal because it is THE MOST COMMON neurological illness among young adults in Canada — the claws don’t really play favourites, and they willingly twist their seemingly razor-sharp talons into people from as many different races and ethnicities that you can think of (I know, I know; it’s certainly more prevalent in northern climes… I suppose the PQ government should really base their model for tolerance on what i once referred to as “the last bastion of equality” that I could find in this world–it doesn’t care if you wear a headscarf. Or if you’re the pastiest, white-boy in the world. If it wants you, the MonSter will get you.  It doesn’t give pause to weigh whether you’re a good person, which is…unfortunate. Cards I was dealt, blah blah blah, not going down that road, at least not in this post. This post is about what’s left of my face!

First, you need to understand that the wheelchair cushion i sit on is comprised of three parts – a foam cushion surrounded plastic viny, making it easily washable and adding some water resistance, , 2nd is the external cushion cover with Velcro tracks to hold everything in place, including me. Problem is, that 2nd cushion cover with those nice Velcro tracks CAN’T be made out of waterproof material due to risk of me sliding out of my chair. The 3rd and final piece is a solid plastic board, 26″x14″. After that a non-waterproof external cover is the first thing to get washed when my catheter does what it does when i leave it unattended, and don’t ensure my hose is clear, the condom securely glued on (yeah, male external catheterization ain’t fun.) So, my inattentiveness or whatever resulted in 1 – my catheter failing, 2 – my cushion cover needs to be washed. 3 – I’m left sitting on a plastic board and that vinyl covered i interior cushion. No cover or Velcro tracks to fasten everything down. 1 and 3 do not work without 2. But I don’t have the presence of mind to REMAIN AWARE that my cushion is lacking its only safety feature–those Velcro straps. Otherwise, I’m sitting on Jenga blocks that the Claw i mentioned earlier is at times playing with to throw me for a lark. Sadistic claw-wielding son-of-a… Grrrrrr!!!!!!!!!!!!!!

And so i was doing something innocent and benign as ever, i reached down to pick up an envelope, the shift in my weight caused 1 to slide on 3, i fell forward, and unharnessed and not providing any lateral bracing on my arms on impact with the floor. Q is still haunted by the sound of my nasal cartilage being crushed. He called it a probable break and because I’m thrombocytopenic right now, , i was bleeding something fierce. I did what i had to, called 911. Q was here with me through every bloody moment. And then the party started!

Out the elevator walk the two smoking hottest ambulance techs in the city. Q and repeatedly turned to each other in an incredulous stupor and asked each other “what is going on?” or “is this really happening??” And since they were the first responders, they stayed with me until i was comfortably waiting to see a doc at the Vic… The brief time, I was able to enjoy their company, they demonstrated a kind of caring that is lost on many nowadays. They said to me – I’m still a person…

Anyway, Doc says maybe just a sprain (and 2 stitches), but I need to see an ENT Specialist, likely in a couple of weeks… and the cycle continues. Incontinence brought on by MS, lack of balance, strength and coordination brought on by MS. My limited mobility and requirement for a wheelchair – brought on by MS. Cuts deep; young guy, had a fantastic job, was ready to make a life for myself. Instead, life decided to make most of the major decisions for me…

A blog post about self-worth and all that fun stuff i s impending. I think I’ve finally gone and damaged this beautiful face ‘o mine…

Stay on your feet!

-A.D.

Suprapubic say what?

We all know how the tremor was my most hated symptom of this insidiously insufferable illness that follows me everywhere I go, limiting my movement, turning everything I want so badly to accomplish into, at times, what seems like an insurmountable challenge. That, however, has become a thing of the past, all thanks to a surgical intervention. Dr. Sadikot, the brilliant, kind, and all-around nice guy with a fantastic bedside manner, has reduced that particular symptom of my disease to something a little more manageable. Though not without risk–there was a 2% chance I could bleed out on the operating table–but this was so negligible for me, it never even weighed into my decision to go forward with the surgery.

They cut open my head, installed electrodes in my left thalamus (any professionals reading this, feel free to correct me) to control the tremor in my right side, and I anxiously await the day when we do It all over again to my right thalamus, with the hope that there is as much improvement as I’ve seen on my right side. All things being relative, however, I don’t have as high an expectation for the right thalamus/my left hand; since the disease grasped me with its relentlessly tightening grip, my left hand has been impacted much stronger than my right. I remember, clear as day, my former roommate Jami spending, oh, I don’t know, about two weeks finding blood spatter in the kitchen from the day I was trying to do something as simple as butterfly a sausage, and, unbeknownst to me, I had cut so deep into my left hand that I’m surprised I didn’t leave a scar. Just to give you an idea of how early, after my first relapse, my left hand was so detrimentally deprived of ANY sensation. I could and can handle “large” movements – grasping, clutching, etc. but the fine motor control has been lost since 2007. It has always felt markedly different than any other part of my body that has fallen victim to the MonSter. Maybe permanent axon damage? I have no clue. As I’ve reiterated countless times: I’m no Doctor, just a victim, as are the other 75,000+ Canadians with this illness. And I do believe that number; it is the higher end of the spectrum, but I think it is nevertheless realistic.

So, in time, my head will be cut open once again, electrodes will be installed, and more wires will run down my neck in order to battle the tremor. Why not? I just need to be sure to stay away from cigarettes and anything else I can smoke. Piece of cake!

I want to figure something out for the urinary incontinence, though. It’s my new curse. I am so very tired of waking six times through the night/morning and scrambling to get to the toilet. I suppose I can consider myself “lucky” – I don’t need to cath overnight, nor wear diaper to bed. No, I can still sleep without any sort of incontinence product, be it a cath hooked up to a 1L overnight bag, or a diaper. Lucky… yeah, right. To amend this issue, if they could locate the lesion in my brain that is the cause behind it, I would unequivocally ask for it to be lesioned – you heard it here, folks; I’d let a competent neurosurgeon (no “Dr. Nick’s”!) cut away at the plaque/lesion responsible for this awful symptom. It’s awful because inserting something up my urethra always leads to infection. It’s awful because using external catheters often leads to failure. And it’s awful because I don’t have any inclination to wear diapers for the rest of my life.

So the one Urologist I’ve seen suggested a suprapubic catheter – a line inserted directly into my bladder. One Neurologist I spoke to counseled me away from this idea, but that was, perhaps, not the best idea. I need a second opinion, and I’m praying that the results from the urodynamic assessment that I had done already are still floating around in the MUHC databases somewhere…

I’m tired of falling. I’m tired of losing weight despite eating 3 meals a day. I’m tired of consistently soaking my skivvies. I’m tired of fighting. It’s not much of a life… But it’s the one I’ve been handed. So I’ll keep fighting because it’s what’s expected of me. And that’s what I need to do. But I’m tired. I’m fed up. And I’m an inch away giving in. At least (much to the chagrin of my family) smoking 3 grams a day kept my spirits up. Consequently, it did also make me lazy and unmotivated to do schoolwork.

And I’ve come full-circle. So… Anyone out there know a Urologist? Whose name is NOT Dr. Corcos…

Anyone? Bueller…?

– A.D.

What did Confucius say, anyway?

I’m too young to be here. I’m too young to be here. I’m too young to be here.

That’s what’s been resonating in my head for the last week and a half, just about since I arrived at Tango. I am the youngest of the bunch (though my hairline begs to differ); most of the residents are old enough to be a mother, a father, some even a grandparent to me. But as time passes, I’m struck with the realization that it’s not about my age. It’s about my level of the very real disability that I have to rollover, and wake up to every day. I have said before that I need help, I have griped and groaned about the accessible housing situation in Montreal. On top of it all, I have been trying my very best to retain some amount of autonomy, to NOT be a burden (at least a heavy one) on my family – even if they want me to. Countless times, my sisters and my mother have offered to open their doors, and let me stay with them. That is, simply put, not what I want, and no long-term solution. They have their own lives, and they need to live them, just as I need to live mine. And so, after a six-month search, going from building to building, looking at condos that I couldn’t even come close to affording, etc., I have settled. Sort of. It’s a process, most assuredly. I still remember being in Calgary, meeting a girl, hanging out at Prince’s Island Park, and baring my soul to her, telling her that my biggest fear was that I would one day be diagnosed with this insufferable disease. That was 7 or 8 years ago, and it all became reality. So here I sit, in the most accessible apartment I have yet to live in (though not without its own shortcomings, however inconsequential they may be) – and here, my life will carry on. And on. And on…

NDG/Cote-des-Neges, bordering on Cote St-Luc – I’m kind of in the middle of all three boroughs of the city. It’s a great area of Montreal, especially for any with mobility issues at the level that I live day to day. At Tango, the staff are courteous, friendly, and ever-so helpful. Whether it’s three in the afternoon, or three in the morning, there is someone here to assist me. Gone are the days of hitting that “panic button” and having to wait for my poor brother-in-law to come pick me up off the floor, praying to the powers that be that I don’t mess myself while I wait. Even my nephew came to visit; I think he liked the place. All the doors are automated, and the sneaky little bugger loves pushing buttons! He was so excited, almost as much as I was to have him here. He’s for sure the cutest thing on two legs then I’m related to! My only complaint is that I have no kitchen, only a microwave to heat food. I eat three meals a day with the other residents, in the common room downstairs. Anyone who wants can feel free to join -$5 for a plate. I am even allowed to have guests stay with me, provided that I inform the administration beforehand.

I don’t need all the services that they provide. I can still shave myself, I can still mostly get on to the toilet under my own power (I am a fall risk, however), I can still shower on my own, still dress on my own, still handle my own finances, and still work on beating down the MonSter. It will allow me time to focus on my studies (I want my English Masters… So maybe in 10 years!), time to focus on the support group that I run with Tristan and Jennifer (it really was their brainchild, I just signed a piece of paper and magically became the VP). He really is the most inspirational human being I have ever met. Lance Armstrong’s got nothing on him!

For everything I’ve lost moving here, I have regained elsewhere. I just have to keep that in mind. But it never hurts to be reminded. And reminded I am, every time one of the staff does something for me, whether it’s picking me up, helping me down, serving me breakfast/lunch/dinner – I just need to remain cognizant of the immeasurable service they provide.

If you enjoy the warm weather, you’re in luck. If you’re like me and detest it with rigorous vehemence – the apex of summer has come and gone, let’s all hope for cooler weather from here on out.

-A.D.

Hurdles

I’ve always been a cheerful sort of “oak” (to borrow the term From my friend in South Africa), but never as much as after my diagnosis. I was convinced since I was 19 that I had MS. The quiet MonSter in the corner that was coming for me. Or so I thought. But I refused to accept what I knew was happening to me. Ever since the day of my diagnosis, however, I’ve been open to trying everything, as is evidenced by most recent implantation of a neurostimulator and open brain surgery. I won’t lie – from a 1st person perspective, it was an incredible experience.  I wish very much that i could watch that portion of the surgery.

Homeopathy, however, is not something I have ever given any serious thought to. Perhaps there something there, and I surely will find out, but one thing at a time. I have most recently been searching for a new place to live, something that is not so easy when you’re confined to a wheelchair. Bathrooms are too small, entryways are frequently not level to the ground, buildings without more than three stories typically don’t have elevators… And the list goes on. The situation is, for all intents and purposes, deplorable. At 28 years old, I don’t want to turn to a CHSLD (for all you non-Frenchies out there, it stands for ‘Centre d’hébergement et de soins de longue durée’, or simply translated as a Long-Term Care Center), but my options are running thin. Either I find someone to live with, who can see past my illness and through all the nastiness that comes with it, and who can retain gainful employment, or I turn to a group home. Since option number one isn’t really an option, option number two has sort of struck a chord with me. Since my surgery, I am afraid to be by myself. I’ve had Q here with me since the day I was discharged, and he has honestly been nothing but a godsend; he helps me get dressed in the morning if I’m too weak to stand long enough to pull my pants up. He helps me get on the toilet on time not to mess myself. He picks me up off the floor whenever I fall, whether it’s getting out of the shower, getting out of bed, getting into bed… You see where I’m going with this. Without having him here, I’d be dead in the water. Sadly, though, there really isn’t any way that I could subject Q to this for much longer. I need help, I need rehabilitation, I need to strengthen my muscles, and I need to learn how to be autonomous once more.

And so my search led me to a place called The Cheshire Foundation of Quebec. I have been in communication with a very pleasant woman named Danielle, and have it set to discuss further on Tuesday of next week, with the eventual hope that she will come here, determine whether I qualify for services from the foundation, and whether they have space available for me – or how long it would take for me to be placed. The home is not subsidized by the government in any way, shape, or form. It’s the only English-speaking residence on the island of Montreal. And it’s right back in my old stomping grounds, or at least not far (Dollard-des-Ormeaux). Slim pickings, but this is my most promising avenue, not to mention Danielle and I had a great conversation, I think her sense of humor is in tune with mine. I only hope…

So that’s it. I never thought age 28 I’d be looking at moving into a care center, but them’s the breaks. It’s just the way my life turned out. There’s no use crying, moaning, or whining about it. My way forward is one of academics, working on getting through my schooling, and doing my best, just like everyone else, to be my best.

I know I can’t walk, but the hurdles that I jump everyday never seem to end.

I’ll figure this one out. But time is running short – I’m supposed to vacate my current apartment by July-1. And so the hunt is on, in earnest.

Stay tuned, and keep cool; the hot weather is here!