I'm Moving... Please Visit Me at My New Blog Home...

Here's a link to where you'll find my new blog posts: Adjusting to Life With MS

I'm a Collaborative Work in Process

Once a month I take inventory at work and place a value on the plant's work in process. It's a bit of a complicated process involving our production, purchase and consumption of raw materials, shop labour and so on. So, how about a personal inventory? Certainly, it's not as complicated a process of evaluation. In general I feel that I'm in positive territory. While I could write on and on about my symptoms or the lousier side of things... how can I write about crummy things when life continues to look up? Here are some really good things going on in my life:

• working hard at my relationship with Daryle
• re-connecting with my sister
• becoming closer with some of my lifelong friends
• progressing with Andy's speech and behaviour issues
• achieving positive results on a couple of levels with Daniel
• focusing on my job at the office

Many things in my life have seen improvement as a direct result from asking for help. It's funny, until just recently, I'd thought that the medical system had somehow let me down in terms of trying to help me with my MS. But, I just had to ask for help and continue to ask for help when something still seemed lacking. For example: Andy has been struggling with his speech, so I asked for speech therapy help, which led to behaviour therapy for him, which in turn led me to personal counselling, which brought me to work on my relationship with Daryle, which has enabled us as a family to focus on each other and become stronger. Upon reflection, the big picture reveals that I now get so much help I should cut my hours at work to part-time to compensate:

Osteopath 1x per month

Neurologist 2x annually or as needed

Family doctor as needed

Jin Shin Juitsu therapist as needed (I don't take time off work to see them <thanks MOM!!!>)

Psychologist as needed (ha! I should be there daily!)

Nurse for my Copaxone 1x per month phone conversation

Nurse at MS Clinic as needed

Neuropthalmologist as needed

Pretty good team, eh? Individually, none of them would be able to take care of all my needs, but together they're fantastic. Okay, okay, I'm starting to sound a little over the top cheerful. But I'm feeling better than I have in a looooong time. Way to go team!

A tulip from my garden

P.S. Visited my osteopath today for an adjustment, prescription and discussion. Didn't even realize that my left pinky finger had gone on vacation until I tried to type upon returning to the office. Come back soon Pinky!

Expressions of Joy

Feel like dancing? C'mon, let loose. Let the music inspire you!

I'm feeling so good these days (plural - can you believe it!!!!!!). I can hardly sit still. Yesterday I felt so good that I actually tortured my family by dancing in the kitchen while making dinner. With the blinds open! <shocking> I couldn't resist moving along with my new playlist. Moving rapidly became "dancing".

At first I felt very awkward and my movements were uncoordinated. What an understatement - uncoordinated! Then, as I became more comfortable and relaxed, the reflection on the fridge door of my feet and legs began to transform into something that resembled dancing. Odd dancing perhaps, but dancing nonetheless. Almost.

As momentum built, I kicked off my slippers, removed my blanket (aka: sweater) and my feet began moving more easily. More than just my feet felt liberated - my arms and hands were more expressive. About half an hour into the display of my... ummm rockin' moves, Daniel actually commented "Mom, you're a good dancer".

"Gee, thanks." <laughing>

Months ago, a nurse told me that it would take a full year to come to terms with my new reality. At the time I honestly thought that I had reconciled myself with MS, in relation to both my present and future. I had everything under control. I have MS. What's there to deal with? Just get on with life. Suck it up Buttercup. It hasn't been that simple though. While my diagnosis certainly hasn't changed and my symptoms will never fully go away, I have changed. Really, I have. I am comfortable in my own skin. I love myself again. Corny, but true. I feel like I've metamorphosed into someone completely different.

I had been looking at MS as though having it involved great loss and personal sacrifice. Loss of freedom, independence, financial stability, physical movement, happiness, joy... As my MS anniversary approaches, I'm beginning to recognise and value the "mores". More compassion, focus, appreciation of what "is", acceptance of life, tolerance, meaningful relationships, freedom in expressing my individuality, contentment and feeling grounded. All good things, right?

So, don't laugh if you see me dancing for the simple joy of it. Trust me, it won't look like I'm dancing for any other reason than for the fun of it! Come over and dance with me. It feels so good to let go. To quote Dr. Seuss "Those that mind, don't matter and those that matter, don't mind."

Here's my latest playlist in case you're interested:

The Void by Metric
Delight (feat. Octavia Rose) by Jamie Berry
Up in the Clouds (Mr Flash Mix) by Darwin Deez
Madness by Muse
Lickety Split by Jamie Berry
Bangarang by Skrillex
Carry On by Fun.
Home by Edward Sharpe & the Magnetic Zeros
Marvellous by Jamie Berry
We are Young (feat. Janelle Monae) by Fun.
Extraordinaire by Joel Plaskett
One Foot by Fun.
Out of My Mind by Jamie Berry


So, while my Copaxone shots are still painful, my left hand control and vision aren't what they once were, I can still dance, sing and enjoy myself. Whatever you do, don't feel badly for me. I've moved on. I've shed my ill-fitting-tweed-coat past and have moved on to my sleek-new-leather-jacket future.

My Wordle

Is this wordle fuzzy?

Try squinting to see it a little better. Did it work?

This is how I see things on a bad day - like today.

Cautiously Optimistic

I'm feeling cautiously optimistic that the Copaxone is starting to work. I'm starting to feel a little more energetic -  I don't mean that I'm wanting to start running or that I'm able to manage anywhere near the things I used to do. By energetic, I mean that the mountain of dishes and the landslide of clean laundry aren't as overwhelming as they were a month ago.

I'm also happier. Shh, don't tell anyone. I feel like I'm jinxing myself by saying it, but the other day, I caught myself smiling. Really! With my mood for the last couple of years being rather low, I'm startled to feel happy. Like my energy level, it's limited. I still find myself staring absentmindedly at a speck on the kitchen table, or barking at the boys, but I'm finding that these bleak 'spells' aren't quite as frequent as they used to be.

I'm also beginning to acknowledge some of my limitations. Perhaps I should rephrase that as: I'm focusing my time and energy on myself and my family - not items in need of repair. For years I've been holding onto things, saving them for when I have more time and energy. The phrase "I can mend that later - I'll just tuck it away for now" has clearly been my mantra for quite a while. My craft room, bedroom closet and various drawers around the house are testaments to my collecting and stashing abilities (interpret as visions of delusion). After a lot of soul searching, I've come to terms with letting go of my idea of such an industrious and creative future - my future 'that was'. Does that make any sense? My future 'that was' existed pre-multiple sclerosis diagnosis. That future had been full of nice little do-it-yourself projects and whimsical dreams. But, you know what? The diamonds-in-the-rough that I've been saving aren't what I'm going to want to do when I have spare time or energy. I don't want to spend my precious time fixing, staining, sanding, painting. I want to spend my time with my family, friends and good books.

So, with it being junk week in our area, I'm going to be lugging a lot of things to the curb. Goodbye rattan patio set. Goodbye, rescue heroes play set. Goodbye... really, the list would be so long and so incredibly dull that I would fall asleep typing it, and you would, in turn, fall asleep reading it. My time would be better spent scouring the house for things to lug to the curb. I am also throwing away things that I cannot do anymore. The opportunity is long gone for me to finish my wedding needlepoint (yes, I know - that was almost 19 years ago and I'm still not even halfway done). My vision will not be returning to its previous clarity and I won't at any time in the future be able to complete the fine stitch-work of needlepoint. Into the bin it goes!

All these years, I've felt guilt and remorse for not making the time to work on my precious wedding needlepoint project. In hindsight, I wish I had made the decision years ago to deep-six it. It's not the needlepoint that's important, it's our relationship. The needlepoint isn't a symbol of our marriage - our wedding bands are.

I'd love to hear your stories about moving on, accepting your future or letting go of items that have been holding you back.

100th Injection - Facing the Future

To say I had a difficult time with my shot on Sunday is an understatement.

Why was it so difficult? Perhaps it was because it was my 100th shot. Perhaps it was the fear of the pain that rises like a flame about fifteen seconds after the shot. Perhaps it was in fear of the injection being extra painful - injections into my thighs often don't go well (either too deep or too shallow, both of which result in pain for the entire day). All the "perhapses" aside, wrapping my mind around potentially having to do this each and every day for the foreseeable future is likely what tripped me up.

A few seconds after my injection, the dreaded burning pain began. At least the meds didn't bubble up just under my skin like they did last weekend. I managed to limp in excruciating pain down the hall, put the clipped needle in its disposal container, grab an ice pack, limp back down the hall and laid down on the bed sniffling. Sniffling rapidly descended into crying. I guess the pillow didn't quite muffle my sobs - after a few minutes Daryle appeared at the side of the bed. When he asked what was wrong, I replied with "I just can't imagine doing this every day for the rest of my life..." sob, sniff, sniff. What a self pitying mess I've become. Picking up a piece of clean laundry from the heap on the bed, I blew my nose. See? Self pitying mess doesn't begin to describe the wreckage of the person that was once me.

Daryle's reaction upon witnessing my despair surprised me: he didn't get cross, he didn't walk away. He just laid down and cuddled with me - didn't even jump up when the sobs subsided. He didn't offer any comments or empty reassurances that things will get better. Somehow he knew that I didn't need pity or false hope, I just needed comforting.

Eventually the boys appeared and began to climb on us, happily refocusing our attention.

An afternoon spent at Daniel's wind-up soccer party and the final game of his soccer tournament continued to buoy my mood. We took Daniel to the Jaegerhof for a celebration dinner - he stuck with his team for the entire soccer season!

My mood descended again as we listened to the radio on the way home - my future again confronted me. A program about MS was discussing two theories: that MS is due to a vitamin D deficiency and that a "cure" might be had by having the CCSVI liberation treatment. As I'm on the fence with regard to both those topics, I thought it would be of interest to listen. The documentary's patient had said that five years ago she'd been diagnosed with MS and her life hadn't been significantly impacted by the disease. However, debilitating pain had set in over the last year, forcing her to leave her job and move back home to receive full time care from her mother. While I'm sure the rest of the program was very interesting, I was unable to focus. I kept wondering if that was what my future held. Disability, pain, dependency?

Ultimately time will tell what my future holds. Until then I guess I'll do my best to keep the beast at bay: keep "shooting up", devouring my kale smoothies and trying to maintain as much normalcy as possible.

Is This What Remission Feels Like?

So, how do you feel today?

What a loaded question. Being at the doctor's office this morning I was able to answer truthfully and with details. The truth with details isn't often how I answer that question these days. But I digress...

I feel quite good today, here's an inventory: left arm isn't numb, toes aren't numb, fingers have minimal tingling, left knee is pain free, energy level is poor, vision is okay, cog fog - couldn't tell you. Okay, I can string more than two words together so I feel somewhat safe in saying that the cog fog has lifted. I'm still recovering from a bruised face (thanks Andy for leaping at me with arms outstretched), sprained ankle and a bad cold. But other than those little details, things are going well.

Does this mean things are getting better, or that at least I'm finally in a real remission? I certainly hope so. On the home front I'm still struggling, but in relation to MS things are looking up. Yay!

Three Steps Ahead, One Step Back

"You'd think that one's brain would be more symmetrical... it looks like there are alarmingly large bits missing in there." My comment is made to Dr. Traboulsee - I'm feeling rather uneasy about what appears to be a large void in the right half of my brain. How can I possibly be alive and breathing, talking even, with such a gaping hole in my brain?!

His reply, in a noticeably calm tone of voice, "No, brains are asymmetrical. If we scroll down, you'll see that the gap fills in and on the left side there now appears to be a void -  your brain is fairly typical. This is interesting, look at the location of this lesion in August's MRI - in December's MRI it is completely absent."

My neurologist and I are comparing my most recent MRI images from December 2012 against the images from August 2012. In summary, it looks like of the ~12 lesions present in the summer 3 have virtually vanished, while a large one has established itself. Hmm. So, now rather than having 12 I have 10. Lucky me! A reduction of 17% - I'll take it.

We went on to discuss whether or not Copaxone is being effective. He'd like to check in with me in six months, by which time the Copaxone should be in full force in my system. I explained that I'm quite happy taking the drug, as it has minimal side effects and is much simpler to take than Rebif. However, if the relapses continue over the next six months at this rate, it sounds like he wants to move me on to Gilenya, Tysabri or enter into a study if there's one available with the medications that I would be considering. At least there are options, although I don't particularly care for them. The side effects (interpret as risks) are greater - I would have to know more about the medications and their financial impact before I make any decision. But, I don't have to think about those options. Yet.

But Mom... It's P I N K

Daniel's in protest about carrying my pink purse. Over the last couple of days I haven't been able to carry much. Even toting my purse makes my arm feel like it's being pulled from its socket. He's been such a little trooper though. I mean, what 8 year old wants to carry his mother's pink purse? Undoubtedly, it would it help if it was grey or black, any neutral colour that wouldn't draw attention to him. However, a purse is still a purse and I can't blame him for not being particularly cheerful about lugging mine around. Rather than change the colour, I'll dig out my little wallet to stash in my back pocket.

This latest relapse has knocked me off my feet. I had such high hopes that the steroid treatment would help me overcome or shorten my relapse, but they didn't. At least not in any truly meaningful way. My arm has lost a lot of strength and control and my left leg feels like it has been cast in concrete.

Yesterday I was beyond grumpy and incredibly off balance. Reminiscent of a tattered old crow, my late arrival at the office was less than stellar. As I attempted to reply to comments about my being in rougher shape than those that had partied hard throughout Superbowl Sunday, I turned and lost my balance - my arm automatically flung itself out to grab the wall to steady myself. Steady would have been infinitely preferable to my staggering, 'drunken' display of extraordinary uncoordinatedness. Is that a word? I'd slept poorly and I felt achy. Oh my God, achy... at times, aside from my incredibly sore arms, it felt like someone had taken a board and hit me across the back of my shoulders with it. I just wanted to crawl back into bed and go to sleep... and sleep...

In retrospect, I think that part of yesterday's problem was that I had eaten a bunch of bread on both Saturday and Sunday evenings. I'm no nutritionist, so my thoughts are purely my own and in all probability sound like total crap to everyone else, but here's my theory: My over-consumption of bread didn't allow my body to keep up with repairing the cells that have been under attack by my own immune system during this relapse. My system was too busy trying to deal with the bread and the possible inflammation that likely arose from its consumption. However, I ate well yesterday and feel much better today. Not 100%, but better. The aches have been greatly diminished and while the control of my left hand and arm aren't fantastic, I'm able to type and manipulate paper. I won't be doing origami anytime soon, but flipping over paperwork on my desk is manageable... and pink purse carrying. I think I can manage that today.

See You Soon, Left Hand

It's official - I'm in relapse. Darn it.

I spoke with the nurse at the MS Clinic and what with the dropping of items and the other issues going on with my left hand and arm, she confirmed that I'm in a relapse. Then she asked what I wanted to do...

Do? I have choices?

1. Nothing
2. IV steroids at a hospital (3 day treatment)
3. Oral steroids

Hmmm... I'll choose door number 3. Visualize fireworks bursting midair.

With any luck the steroids will help prevent some permanent nerve damage and derail the relapse before I lose complete control of my left hand. Today it feels chilly and more sluggish than yesterday. Out of curiosity I wonder how strong my grasp would register on the grip-o-meter at UBC? I'm such a nerd - I want to quantify what's going on. Ha!

Earth to Left Hand, are You There Left Hand?

Okay, I'm having a difficult time admitting to myself that I'm losing control of my left hand. I haven't told Daryle about how bad it is and I haven't informed my neurologist. Everyone at work is in the dark as well. Whenever I think of mentioning it, I stop myself. This one is terribly difficult to deal with.

I can still type, although my fingers are stumbling across the keys a little. How can I describe how they feel? It's like they're suddenly in unfamiliar territory, or as though the air has become quite dense. My grip isn't very good either. Over this past weekend I kept dropping things. You name it, I dropped it.

As I've mentioned before, I'm a little afraid to tell my neuro about it. I don't know if I can handle the feedback. On the other hand, what if this is the real deal, another damaging relapse? If that's the case, then I should call right away in case I need to go on the iv steroids to minimize the damage. Pardon me, but BLOODY HELL!

Having this is so inconvenient.

In addition to feeling less than graceful, I now need to fill in extra paperwork to continue with my medication. My benefits company has advised me that my coverage will cease in April if I don't apply for assistance from the government. I understand that they're trying to minimize the impact of the costs on their plan, and I also understand that threatening to cut people off their meds is probably their only leverage for getting the forms completed in a timely manner. Regardless, it feels like someone somewhere is thinking that I'm taking advantage of the situation. That I'm racking up the exorbitant medication costs on purpose. Yes, I really, really want to inject very painful, acidic medication every day. It's so much fun and I'm so glad it costs so much - about half the cost of our mortgage. Yes, this is what I want.

Even though I whine and complain about it - I will fill in the form and continue to jump through the hoops. What choice do I have? I should feel privileged that I have access to the medication, that I will continue to have coverage once I complete the necessary paperwork. Can you see my radiant smile? No really, I've talked myself into feeling better (quite frankly I've talked myself into getting my head out of my rear).

Sigh. Gosh I'm whiny these days.

Is Normal Good Enough?

Aaahh, life appears to be returning to normal. I've been able to keep the next relapse at bay and I'm feeling a lot better than I have in a very long time. But I'm concerned by what my new normal routine looks like:

• Wake up
• Throw breakfast and lunches together for the boys to be consumed elsewhere
• Cajole Daniel into getting dressed
• Wrestle Andy into his clothes
• Strap wings onto the van for the flight to daycare
• Install jet engine for the flight to work
• Collapse into chair at the office, grab a coffee, place injection kit on top of computer tower
• Avoid injection kit for at least two hours until it can't be avoided any longer
• Plough through piles of paperwork and check off things on 'to do' lists at the office
• Trip to bank on way to pick up the boys at daycare
• Arrive at home, unfasten and put away wings and jet engine
• Cobble dinner together (usually three different meals)
• Get boys ready for bed
• Collapse into a heap

Repeat four more times until the weekend arrives, then adjust as necessary.

In the meantime, the routine doesn't have much wiggle room to allow for personal interests, time with friends or family, cleaning the house, weeding the garden, playing the ukulele, and so on... House falls further into disrepair, weeds are now celebrating the arrival of their 20th generation born since 2011 (I think I saw a flag marking new territory conquered last time I looked out the window), ukulele - I'm sad to say it has a bit of dust on it, but not as much as the other stationary items in my home. Yikes. What am I going to do?

Here's what I'd like to do. Get rid of everything, sell the house and move into something smaller and more manageable. We're thinking - town home? A couple of flower pots will suffice for a garden and someone else can mow the lawn and deal with exterior maintenance items like painting the exterior of the building and cleaning the gutters. I'd like to be able to bring the playground with us - perhaps we can modify it to fit a postage stamp sized yard. I'd LOVE for the boys to be able to play outside without me having to hover.

Cleaning has become a big issue. Let me clarify - lack of cleaning has become a big issue. A close friend recently told me that I shouldn't worry about the dust too much, dusting once a week would be just fine. Really? <my choking and sputtering laughter in background> Once a week? I'm lucky if I dust once every two months!! Shocking. To think that I used to clean the house top to bottom every Saturday. I'd even move the furniture to vacuum underneath. Who was that person cleaning? Where did they get the energy? Where did they get the time? I can't recognize her from this distance - she's a blur. Perhaps we could afford for a cleaning service to come in once a week. It feels like admitting defeat though.

My apologies in advance here - some serious whining is about to take place. Yes, I know, difficult to imagine that it can ramp up beyond the whining that's already taken place in this entry. Ahem, here we go... cue the violins...

What happened to our lives? We feel like we've been trapped in some sort of strange bubble for a long time now - do other families actually have fun with their children? I desperately want to have the energy and time to take the boys hiking, camping and other fun activities, but I feel that having fun needs to come after all the chores are done. Frankly, Hell is going to freeze over before my chores are done. The boys (and Daryle too for that matter) must be a higher priority than dust. Sounds logical, but putting this into practice is difficult. Especially when neither cleaning nor family fun ever seem to happen. Something's gotta give, but what?

Who am I? Where Have I Been?

Yet another entry waiting in the wings. This one is much more recent though.

- January 10th, 2013 -

Have you ever felt like you've been lost for a long time? I mean, really lost with no sense of true identity or purpose? Like nothing mattered, that you were just treading water until your real life began?

Recently it has felt like I've awoken from a long slumber. For example I haven't been able to sort through a particular pile of paper for four years. Normally, I would love to sort through this pile. I've never been challenged with making decisions on what can stay, what can go and what needs to be filed where. This particular pile has grown from the singular to the multiple, morphing into boxes full of crap. The boxes have been bothering me, summoning me to deal with them. I'm tired of moving the boxes around my craft room. So, today I sorted through about half the pile. I feel slightly better and look forward to tackling the rest of the heap.

Why haven't I been able to deal with the mountain of paper? Four years is a long time to let something build. While I will never really know, I think that my brain has been in survival mode, coping with an increasing number of lesions for a long time and it just couldn't cope with something that had no direct bearing on my day to day functioning. Perhaps my brain has been fighting MS for longer than I thought. Can it be possible that Copaxone is responsible for my dramatic changes, both physically and emotionally? Can I hope that things will improve further in the near future?

I am so relieved to be starting to feel like 'myself' again. It has been such a long time. Who knows... maybe next year I'll be able to manage making/buying proper Christmas gifts for people, rather than impersonal gift cards and tackle some things around the house that a normal family would have already taken care of (hanging pictures, decorating, playing in the yard, you get the drift).

Whoa, Slow Down Nelly

Here's another entry that's been sitting, waiting to be edited prior to posting.

- January 3rd, 2013 -

Happy New Year Dr. Blaney!

How are you?

Fine, just fine. Well... there've been these little things troubling me:

- numbness and lack of control of left middle toe on occasion (giving me the 'finger' so to speak)
- rigidity and lack of control of left ring finger on occasion
- stiffness and pain when bending left knee
- confusion and disorientation when driving to a friends house
- discomfort about driving at night (too dark, details aren't a clear as I'd like them to be)

He gave me an adjustment, after which we our usual discussion. I told him that it feels like I'm "shorting out". He explained that the Copaxone is busy preventing a major relapse and we spoke about the relationships between my immune system, inflammation, and my overall health mesh together. Over the past few months I've been working on the various aspects that I am able to influence or control:

Sleep: I'm sleeping better these days and only occasionally use a sleeping pill. I go to bed at roughly the same time each night and have drastically reduced the light sources. I'm working on getting Andy out of my room and into his own. I also never have any caffeinated products in the evening. Well, very rarely - we're not perfect after all! Ha!

Food: I will be trying Terry Whals Mind Your Mitochondria diet. I haven't fully researched it yet, or done the grocery shopping. But it involves ramping up to 9 cups of greens a day, grass-fed beef, wild fish high in omega 3 fatty acids and also small amounts of organ meats. Ick I don't know about that last part. Here's Terry Whals' TED Talk - it's worth watching.

Rhythm: I must focus on keeping my daily rhythm relatively similar from day to day. Nothing too jarring, nothing too crazy, just keep my system ticking along. I believe this is to keep the alarm bells from sounding and kicking my immune system into high gear - the end result of which would be it attacking my central nervous system and cause a flare up or another relapse. So, keep the daily routine and don't put too much on my plate, keep extra activities to a minimum (should I tell him I've become a Cub Scout Leader?)

Exercise: he recommended that any exercise needs to have a minimal chance off trauma so as to not overstimulate the immune system. Okee dokee, skating is definitely out of the question. Frankly, given my balance issues, walking and even standing are relatively hazardous. I'll focus on walking and using my elliptical trainer. What a wimp. Now, to find 30 minutes each day to exercise. Perhaps first thing in the morning before the boys wake up.

In a month we'll re-evaluate my status. At that time he may, or may not, put me on an anti-yeast treatment as it will have minimal impact on my immune system. He's treading very lightly. Once that's done, he may consider putting me on a low dose antibiotic. In the meantime I'm to stay on course with Copaxone, as it may likely be working hard, as we speak, preventing a major relapse.

Whew, What a Day

This post was originally written in point form after I had come home on December 11th, 2012. I have only just found the time and energy to properly type the blog and transform it from the childlike scribblings into, hopefully, something more coherent.

- December 11th, 2012 -

I have decided to participate in a study at UBC which compares MRIs over a period of years for MS patients on Copaxone. When I enquired about the control group they indicated that it would be members of the general public, non-MS patients who of course are not taking Copaxone. During my study visit I discovered that many within the control group are students and researchers at the university. Ha! Funny. But only marginally.

So, what's interesting about being a participant in this particular study? It certainly doesn't have the flash and glamour of a new breakthrough medication, or even an enticement of trying to see if another relapse can be avoided. In truth, there's no benefit to me medically. Financially, slightly. They've offered $50 per day spent at UBC for the sutdy. Clearly, I'm not it in for financial gain; I would have participated in the study regardless. The study just monitors my brain deterioration over the years. Charming. However, by participating I feel like my having this disease isn't a complete waste of time, that perhaps something useful may come from it. If not for me, then at least for someone else.

As I so often do these days, I arrived at the hospital in spectacular fashion: breathless after running from the parkade, bags slung over my arms, shoulders, every which way, coat flapping around me like a half-opened candy wrapper. Uggh, what a sight. It had seemed that when I was driving, everywhere I turned there was a traffic jam. I was 20 minutes late and I didn't have the researcher's cell number, so I couldn't call and let her know what was happening. So, when I "landed" at the UBC lab for my bloodwork to check kidney/liver function, I was shocked to discover that the lab nurse had absolutely no idea that I was so late or even that I was supposed to have been meeting Clara from the research team there.

Shortly, Clara, one of the doctors working on the study, did arrive and discussed the situation with the lab. Turned out to be such a non-event. Blood drawn and being processed, we went down to the MRI room. After changing into the delightful hospital issue jammies (I had to fold and roll the pants up at the ankles just so I wouldn't trip and fall en route to the machine) we received the a-okay on the kidney/liver function bloodword and were able to proceed with the the IV for the contrast. Honestly, that part could have gone a lot better. The technician had to try several times to get the IV in. They wouldn't listen to me about using my right arm. So after about four tries, they inserted the tube, sideways of course, and began the saline drip. After being slid into the machine, the peanuts teacher kept talking, but I couldn't understand a word what with the earplugs and a soft pillow wrapped around my head, not to mention the gargantuan throbbing machine all around me. I wish I could have told her, politely of course, to not bother talking, just get the process over and done with.

In retrospect, the peanuts teacher was probably telling me that the IV drip would be switching from the saline solution to the contrast dye and that I might feel and icy-cold fluid dripping into my arm. Wow, that was cold, but I soon warmed up and the MRI continued uneventfully. Just closed my eyes, listened to the banging and thumping of the machine, which was interrupted only occasionally by the peanuts teacher. Forty-five minutes later I emerged from my cocoon. Not a butterfly, but a rumpled warm bug with a sore arm.

At this point I had thought we'd break for lunch. But that didn't happen. Hmm, the next section must be really quick, otherwise they'd have let me have a break, I thought to myself. In hindsight, I should have said them out loud and I might have actually had a nice little break to regroup. Regardless, as I'm escorted upstairs to the research lab, I can't help but think that the worst is over. Wrong. It quickly became worse, much worse. In reality, my day began to resemble a horror film. I had been aware that they would be testing the electrical responses of my brain. No big deal. My VEP performed earlier in the year to test the speed my brain was dealing with visual stimulii was a piece of cake. I didn't think today's visit would involve being painfully zapped by a large electrical coil while clenching a metal grip-o-meter with all my might over the period of an hour and a half. "I don't think the machine is set up properly" I heard them say. "Try one, and we'll see"    Z A P !    "No, let's change...." Crikey, it's bad enough being the guinea pig for the study, but to be the guinea pig to set the machine up properly - I'm not impressed. Severe grouchiness is setting in. Fast.

After what felt like an eternity, I was unhooked from the electrodes and made my escape. God, I don't know if I can endure this again in another... I don't remember what the frequency of the study is. They zapped it out of my brain.

Although it was only 2:30 when I left UBC, I was completely worn out. I felt like crying, I felt tired, I felt hungry and even a little angry. I picked up a salad and debated returning to work as I munched. Sorry, not today. I'm a wreck. My only consolation is that the control group made up of the students and researchers will have to endure the same painful testing - at the very least they'll be able to understand and empathize with the study participants.