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!