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.

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.

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.

Things are Going Well

Just a quick update on where I'm at:

• I've taken 5 doses of Copaxone now.
• Still performing MCV JSJ every morning.
• Sleeping well (as long as I don't do silly things like drink coffee in the evening).
• Had enough energy to do some laundry, help set up the Christmas tree, attend a couple of get-togethers on the weekend...

Well, probably should have taken a pass on the second get-together. It was a little too much, but perhaps someday I'll learn to dial it back a little.

Any suggestions on how to make my Christmas any simpler? I'm going to streamline many things this year, the dinner is going to be relaxed (as usual), the presents are going to be oriented towards the children (sorry adults) and I will resist bolting to Victoria to escape the chaos and mayhem of the holidays. Might do that anyway as soon as Christmas is over. Hopefully.

Thinking along the lines of dinner preparation... is it too early to cook the Brussels sprouts? Ha! Perhaps I should concentrate instead on getting the cards in the mail and preparing the house.

First Copaxone Injection Done

The training session with nurse Janine was a success. We reviewed, in great detail, how to administer, store and travel with the medication. Of course we also reviewed how to dispose of the used paraphernalia and syringes - after clipping off the needle first.

Let me introduce my new friend aj.

We practiced injections using a practice injection pad prior to administering the real deal. Janine gave me the choice: manual or auto-injector (aj for short). Not feeling particularly brave, I chose aj. I was pleasantly surprised at the simplicity of aj. So easy: prepare aj, locate injection site, clean site, hold aj at a 90 degree angle, press gently until aj is ready, then click on the trigger. “It will feel like a bee sting” she said. Count to ten, remove needle, apply cotton ball. Count to ten. Done. Bee sting? Nope, hardly felt the injection at all.

A few seconds later the fun began. By fun I mean, burning and stinging sensations, lasting 10 minutes or so, followed by site tenderness and redness. Janine told me that the location I chose is actually the most difficult and usually has the worst immediate reactions. Good. I always like to get the worst case scenarios over and done with quickly.

Now, even though the pain has passed, I have a funny taste lingering in my mouth. It’s definitely not the stale coffee taste that I had prior to the injection. I don’t want to say it is a buttery taste, but it’s not metallic, fruity, salty or bitter either. Just different.

When we reviewed the manual method, it really didn’t look too difficult. I think I could manage it if I had to. The main benefit would be that I could insert the needle at a 45 degree angle and reduce the chance, especially in the arm area, of hitting muscle. In time, depending on how things go, I may find that I’ll use aj for the buttocks, thighs and abdomen and use the manual method for the arms.

I’m feeling much more positive about the whole process now. I can handle this. I think I could even easily hand aj off to someone else to perform my injection for me. It’s so unobtrusive, I don’t think it would creep them out at all.