when skies are grey

It is currently 30 degrees in my living room and it's just past noon. Time to turn the furnace on to blow some cold basement air around! It's dusty, but it works.

Other people are all:
It's SO NICE to sit out in the heat!
and I'm all:

Locals warned me about the hothothot summers here, and I witnessed a few days of it when visiting last year, but boy - it's been scorching these last few days! It's a tricky thing to manage with MS. I get serious cognitive dysfunction when my body temperature goes up, so it's hard to find motivation to leave the house. Last week Nance and I were out for a little walk with pooch and after around 25 minutes (mainly in the shade), the heat hit me like a ton of bricks. I don't feel it happening. I don't realize that I stop walking. I go from fine to waaay not fine like someone has thrown a shutdown command without a restart option. We went from sauntering up the hill to get home to me shuffling to the side of the road, foggy-brained, and annoyed with N for holding a water bottle too close to me.

It didn't dawn on me she was suggesting I drink some of it. Cog fog removes common sense processing. And I can't articulate my thoughts in those moments, which is the scariest part. I know I'm too warm, but can't think how to fix it on my own. Being dependent on someone else to recognize those signs is not ideal. I took a drink, found some shade and after a few moments someone pushed the On button again.

On the flip side of not wanting to seek out opportunities that may bring cog fog, exercise is of great benefit for those with MS (and…well, everyone), and I love being outside. These elements combined leave me in a pickle. Do I grab the soccer ball and run "suicides" with Nance? (no…tried that…bad idea for all kinds of reasons) Do I stay indoors and become resentful? Also, no bueno.

If someone can suggest an outdoor summer activity that keeps me relatively cool and is available in my current location (no swimming pools other than a small kids pool, don't even suggest it), lemme know. The beach used to be a great option since the ocean gave a cool breeze, we could walk, and the dog could get a swim in. Sadly, moving inland has struck that from the list of possibilities. My best idea so far is to carry an oversized patio umbrella around with me, but I'm not so sure that's socially acceptable.

And I'm told walking to get an ice cream does not count as exercise.

new findings

What we know is never concrete and whole.

Nothing makes that more apparent than the recent discovery that our brain has lymphatic vessels that were previously undetected. Thousands of specialists may now have to rethink their understanding of the brain. For those unsure, one of the lymphatic system's functions is defence against foreign particles, microorganisms, and diseases via the immune system. One big filtration system. So, if that filtration system has some weird issue in a vital organ such as, let's just say, the BRAIN - bad things can happen.

It's a pretty big "wow!" moment and turns our understanding of the brain on its [apologies] head. The brain has a drainage system that no one knew about? Seriously? No one knew the tub had an open plug? All along, we thought that the blood brain barrier, something akin to a conniving barbapapa, from what I can tell, was the only entrance to the brain's home.

Another function of the lymphatic system is that of absorbing fat soluble vitamins, like vitamin D and transporting those substances to venous circulation. Still with me? Could drainage be the problem after all? Does this somehow explain why people with MS respond so well to vitamin D? Does this explain why or how CCSVI works for some? (the lymphatic system would eventually drain into the jugular)

What is happening?! How can all of this be? It's exciting and confusing at once!

Sure, anatomy textbooks have needed updates before (Belgium found a new knee ligament just a few years ago), but this feels like a potentially huge leap forward for research. If there are lymphatic vessels in the brain, the blood brain barrier has a backdoor and we may be able to start understanding why - yes, why - some MS drugs actually work. Or, maybe, maaaaybe even start  getting a better handle on causation. Dare I even conjure a whammy on that one?

Imagine if neurologists, immunologists, radiologists, and pharmaceutical companies all got on the same page! Don't roll your eyes at me; it could happen, right?

This finding may have a more immediate impact on people with Alzheimer's than it will for MS, but it is a very compelling piece of science either way. People with Alzheimer's are shown to have huge chunks of protein in the brain for no known reason. Now the number one suspect is a relatively straightforward drainage problem. So far, these lymph vessels have been found in mouse model studies and confirmed in human autopsy.

So, now we wait to see what comes of this.

Because something will. 

To paraphrase Buddhist canon, "three things cannot be long hidden: the sun, the moon, and the truth".

xo

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.

xo

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.

xo

where's my tauntaun?

It's a bit of a strange time. Our wedding is months away, but people want to talk about it a lot. I'm a little averse to that since it's generally meant to be one big party and I'd rather not put too much pressure on the day to be ideal. It's a semi-fancy party in the woods and I'm trying to keep framing it that way. No wonder people get so stressed out about wedding planning.

It has also been a time of remembrance for me. A childhood friend of mine passed away far too young and I've been thinking of her a lot. Remembering youthful shenanigans. I'm not one to share this sort of thing but it feels wrong to do an update without acknowledging her passing. xo

On to more mundane news…

It has been a long, cold winter. While the rest of the province is hiding somewhere beneath mounds of snow, we're able to see over the banks in all directions, but are freezing our rumps off. December was the coldest winter on record here in decades. We're at the point where an unexpected 0 degree day felt glorious. I didn't even wear a coat. 

Sadly, the extreme cold means there's little opportunity for socializing. Yes, I said sadly. And yes, I am still very introverted. I love my partner with all of my heart and can't imagine living here without her, but boy, we need outlets. f'realz. We're great together, but we're just not people who can have supper and then watch TV until bedtime every evening. We've dusted off the crib board, started a ginormous puzzle, I've even taken up crocheting. We're just…bored. When it's reasonably warm (read: not -30s) we can snowshoe, thankfully. Going to the gym work days at lunch is also helping burn off some energy, but I find myself searching for signs of Spring at every turn. Oh, to be able to comfortably walk the dog! Listen to me - I'm hoping for the days of muddy dog belly!

Abbey seems content with the cold and snow.

That cold is particularly uncomfortable, as is any extreme heat, because I have A) Raynaud's and B) dysautonomia - an MS accompaniment that is behind my inability to thermoregulate. There's pretty interesting research coming out about treating dysautonomia - a condition that is also seen in Parkinsonian disorders. It's basically an electrical stimulation of nerve fibres administered to potentially regain balance in the hypothalamus, the portion of the brain responsible for thermoregulation.

In other research news, dextromethorphan, a drug found in cough medicines is showing to protect loss of myelin in animal models. I'm not one for animal model reports as they rarely make it to phase I human trials, but this one is pretty intriguing as it could means a low cost drug alternative for those without the means to purchase other, exorbitantly-priced MS medications.

And one more from the research mines - also animal model stage - cinnamon is showing to suppress clinical symptoms of what is the mouse equivalent of MS. Kinda neat - bring on the spice!

That's all for now. I'm off to shovel, check the fire, and crochet yet another something.

relocation acclamation

It has been a very busy few months of boxing, organizing, and fresh starts.

We have packed up and relocated to a stunning, friendly, little town of 5,700 people. To put that in perspective, when I lived in the metro Chicago area, I was surrounded by 9.5 million souls. GTA? Around 6 million. Luckily, I enjoy a quiet life, so the change is not too drastic so far. 

So, here I am living in Brayon territory training my ear for a very different dialect. It's French, yes. 82% of households here have French as their mother tongue. But it's also a living, breathing, colourful mix of French, English, and a mystery ingredient I've yet to identify. It's not just chiac as many suggest - it is its own non-acadian thing. And that thing is damn hard to follow for an Anglo like me! At least chiac has a strong English mix I can follow, like "watcher un movie" and "parker mon car".

But, I'm trying and I'm learning. It's rare to hear English or even fragments of French I understand when out and about, so it's like there's a constant noise buffer around me when we're shopping. There's a soft wall of conversation my curiosity can't lean against. 

One thing is for sure - news travels fast in this town. We were out shovelling a few days ago and met one of our neighbours who already knew where Nancy works and what she does. He already knew what kind of dog we have, that she's very friendly, and not that old. That I work from home. The grapevine grows on the neighbourhood watch signs here. It's somehow refreshing, though. We were a little concerned about being a female couple in a small town, but have yet to face as much as an eyebrow raise from the locals. If anything, that we're vegetarians attracts more attention. 

I'm enjoying life here so far. It's a little more challenging for my social fiancée in that she doesn't yet have a group of like-minded people to run with, but it'll come. We are meeting good people, and although we miss our SJ friends very much, social life here will become more familiar and comfortable with time. Plus, our friends in SJ HAVE SAID THEY WILL VISIT. ahem. reminder.

The cold is something we all have to get used to. The temperature has bounced around and on warmer days we snowshoe, but we've had windchill in the negative 30s nearly every day since Christmas and it's hard not being able to exercise the dog. And hard for the pooch to behave with so much bubbling potential energy. It's -18 today, so Abbey and I bundled up for an hour-long trek. We are both much more satisfied because of it. Her frozen, eyeless teddy bear may tell a different story.

One thing that concerns me about the weather here is the threat of summer. People keep telling me it nears the +40s on occasion and I am just not built for that kind of heat. I become a bumbling, confused mess in the heat. We're renting for now, so hopefully by the time that menace rolls around, I'll be living in a place with air conditioning!

Nothing to report on the MS side. I'm doing well unmedicated. I feel as strong as ever and am hoping that trend continues. Vitamin D, CoQ10, curcumin, B12 - 6-7 servings of fruit and veg a day. I know with a wedding on the horizon that this year may bring some undue stress, but we're trying to plan ahead to mitigate it. 

Here's to new beginnings!

You do what now?

Hold on to yer panties - I've been running. 

Yes, running.

I don't know if I've ever mentioned my dilemma with running here before, but it can be summed up as "I run, I heat up, I fall over" - pretty typical for someone with heat sensitivity caused by MS. But, this funny little cold snap know as October has allowed me to get in a few kilometres here and there for a few weeks now. Actually, a few months. Whacky. 

I am seriously fortunate to have the best fiancée ever (vomir, right?) and she's been supporting the running. It's hilarious for me to be chugging along at 4km and see that she is chipper as a chipmunk and has hardly broken a sweat. I keep myself from throwing things at her by reminding myself that running isn't just a skill one picks up overnight. ;) She's a great running partner for me, though. She gets it. She knows I'm dealing with more than burning lungs and tired legs when I run - stabbing head pain being the number one issue. But, I tell myself that it's temporary and try to block it from my mind and carry on as best I can. Rather, I try to embrace it in some twisted way - acknowledge it and let it be so it fades from my immediate thoughts. Namaste, yo.

I'm by no means claiming to be a runner...I have more of a "YAY - it's over!" mindset about it. But, I'm ready to go as soon as N gets off work, so clearly something in me recognizes the gain beyond the pain. So, cheers to that! Also, Abbey's loving family running and I'm suddenly more likely to randomly run on our walks now and that blows her fuzzy little mind.

On the MS side of things - nothing to report. My lower right leg is numb off and on, but it doesn't impact my day to day physicality, and years after diagnosis, that sort of thing doesn't have a huge impact on my state of mind either. I'm also trying to ignore the jumping nerves in my face this past week. Hoping that's just lack of adequate rest. 

I've been eating well, exercising lots (heaven is 20 minutes and a set of dumbbells for me), and just trying to keep on keeping on in every positive light possible. Planning a wedding and having a dress (sidebar: WE BOUGHT DRESSES!) - those are big motivations for staying healthy and active.

Oh, new supplement CoQ10. Great for vascular health. If someone can explain the stabbing pain in my head when I run as anything other than a vascular issue, I'd love to hear it.