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.