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.