Wednesday, 27 May 2015

World MS Day 2015

In light of World MS Day, let me take a moment to talk about my least favourite question: How are you feeling? 

(Close seconds being "how is your body?" [shudder] or "How is your MS?")

Don't get me wrong, I love how supportive my people are. I have super friends and family and the most amazing girl in the world behind me. But, for the life of me, I can't figure out how to answer this question. No one actually wants to hear "Well, I haven't felt my right shin in I dunno how long...and man, grabbing hold of the right word in the right moment is becoming increasingly harder." No one wants to read the boring litany of new MS research studies that never make it past studies on Mickey and Minnie.

This isn't a flu. It's not a cracked bone that can mend or a wound that will close. It's not like there's an -ectomy or -otomy to remove what I have. The answer is never truly "fine" - that would be a constant lie. Nor do I want to talk about my every twinge and ailment. So, what is there to say?

This disease will be with me for the rest of my very (universe-willing) long life. MS is chronic and progressive. I will, most inevitably, decline at some point. Marking that decline through small talk isn't high on my list of things to do.

My life is different. I've been rewired head-to-toe by a drunken electrician. Life is good but it is often a multitude of tiny struggles that defy description. 

So, if you're wondering how I am, ask how I am. Please don't ask me how I'm feeling.

Friday, 15 May 2015

visits, sunshine, and a few extra pounds

Spring has officially launched in tiny town! There are flowers of some as of yet unidentifiable variety pushing towards the sky in the flower box. Birds aplenty. And the smell of manure here in farm country is starting to pervade the morning breeze.

I'll take it.

Sooo, what's new? Mom's visited. I spent Mother's Day with her for the first time in maybe 17 years. Not 100% sure on that guess, but that's when I moved from my home province, so it's my best estimate. It was nice having her here. Fairly relaxed. We managed to fit a lot into her stay while keeping the day-to-day pretty slow. We saw a comedy show, had a dress fitting, attended an awareness walk, visited the wedding venue, been to a handful of farmers markets, frequented a potato chip factory, visited the falls, watched Nance run a half marathon, went shoe shopping, had a few nice dinners out, had a few nice dinners in, walked the dog a bunch, frequented the local ice cream parlour a handful of times, wandered around Fredericton + Saint John + Grand Falls + Edmundston, talked wedding talk, went through our wedding decorations, and sat in the sun! Yay, sun!

We've had a smattering of wedding replies so far. We've invited as much of the away fam as we could (no one told me editing a guest list would be a Herculean task!) and it's tough to estimate how many will come. I'm eager to send out invitations to the mainland folks too since most of our closest friends fit into that category. We're not spending a lot of time fretting about it, but the details are mostly falling into place bit-by-bit. No hints of bridezillas yet! 

Let's talk about the MS hoohaw a moment here since it's May and I'm often putting out a call for donations around now. This year, however, I'm living in a place where there is no MS walk. The closest is 2 hours away. I'll miss those few hours of community - I can't begin to express how walking with other people in the red bib feels - but I'm okay to opt out a year. I know my own family and friends donate to charities of their choice no matter what, and I'm thankful for the awareness they spread on my behalf and the behalf of others with MS. 

The cause of MS is still unknown and there are four major theories:

  • Infectious - childhood viruses could trigger an onset of MS or the irregular immune response we develop. Epstein-Barr is the front runner in that race. So far no virus has been directly linked to MS.
  • Immunologic - an irregular immune system response is pretty much a de facto part of understanding MS. Some believe that's the end of the story - we were born with wonky immune systems that deteriorate with time and start attacking healthy tissue. Others believe that the immune response is a result of some other issue that haywires our immune systems. 
  • Environmental - there seem to be MS clusters, or areas where MS has much higher incidence and prevalence than other ares. There's also the vitamin D mystery. Most MS cases occur fa away from the equator, so it's thought that vitamin D may be a contributing factor. Supplementation does have significant numbers supporting that theory. Diet is another environmental factor that's thought to play a role. Obesity and salt in the diet raise the risk of MS. Is there anything that isn't a risk factor?
  • And lastly, genetics - according to the literature, if you have relatives with MS, you have a higher chance of developing it. I'm not sure how anyone could fully tease any one of these theories from the other, but there is no doubt that there is some sort of issue with hand-me-down genes. I have 2 relatives with MS on one side of my family, and 1 on the other. I don't personally know of relatives in older generations who had MS, so I can't say for sure where my own genetic predisposition comes from, but it is bound to be from both sides. There is a very tiny increase in risk if you have a blood parent with MS.

On that note, I feel well. I'm 14 months off of a disease-modifying therapy. I have a smidge more weight on than usual (bitterly cold winters in a small town meant more vino than necessary), but it's dropping. Coming out of hibernation and into a warmer season is so amazing. I can't wait for fresh produce to start showing up at the local farmers' market! We're starting a "cleanse" soon of smoothies and soups to get back in the swing of things. Having company means we end up bringing things into the house we normally wouldn't (not under duress - see list of things we did with mom for proof) and if I look at bread, I gain 4 lbs.

On a non-MS note, I've been struggling with this stupid reflux. I went through a dietary process 10 years ago to try to figure out my triggers, but it turned out that it's triggered by food. Period. So, hopefully losing a pound or seven will get it back under control. I've been on proton pump inhibitors for ages and ages and just switched to a new one in hopes that it'll help. This is also a bit of a genetic thing - muscular problems with the stomach or esophagus. It scares the crap outta me when I have swallowing troubles - I always wonder if it's MS (it's not) or reflux (it is). Some of the potential longterm symptoms of MS are troubling to me and dysphagia is a big one. Who knew heartburn could cause so much paranoia!?

We have company coming this weekend, so I'm off to hang sheets on the line and freshen the guest bedroom! Peace out.