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

All things four legged

What's that saying? Don't count your chickens before they hatch? Yeah, something like that.

So, Abbey needed a fourth knee surgery. 4 in 13 months. Heartbreaking, really. 

She's free and clear now - she had the other medial meniscus removed and is back home again, safe and sound. Poor pumpkin. I feel so bad for her - it must be utterly confusing. But, as always, the good news is she's recovering a-okay. She's back to her buoyant self - boundless energy. She's on house arrest for another week and a half and then rehab begins again. Today's the last day of meds and the incision looks good. Just when we were getting back into long walks!

So, here we are, snuggled up on the loveseat together, her giant head occasionally lolling across the keyboard, her rear left limb shorn and scarred. It'd be pitiful if every so often she didn't lift her head, tip it backwards and try to nibble my chin. I love this yellow beast. She's indefatigable and even more so now that she's not allowed leash walks. Lots and lots of training sessions to keep her mind busy. Her most recent behaviour is to place her chin on her right paw on cue. I've named it "nite nite".

Nothing to report in other areas. No change in symptoms that I can detect. I'm still off of Avonex and it seems to be going okay for now. One positive is that my Saturday mornings are way better without the Avonex hangovers I've had from the beginning. I'm still aiming to go through the provincial process once all the paperwork works out.

The MS walk is less than 2 weeks away. Looking forward to that. I'm past my goal now and am very grateful for the support. Here's hoping for decent weather! We'll go regardless, but good weather helps the overall mood of the event.

Nance has been out of town for a few days. I keep telling her that when she's not here, Ringo (the cat) is up nearly all night. This was this morning's example.

5:04 A.M. 
Woke in a haze. Something woke me but I wasn't sure what. Listen.
There it is. Ringo was breathing strangely. He has mild asthma, as many Siamese do, but this was different. Loud. Opened my eyes to try to spot him in the dark and could see he was on his cat perch, facing the wall. I called his name and he hopped to the bed then back to the perch then back to the bed wildly. Uh oh.

I threw my legs over the side of the bed and turned the lamp on. I could see from his profile that he was wide-eyed and breathing like he was the size of Jabba the Hut. I hopped out of bed to get to him and he snapped his head around looked at me like I was effing crazy…like I had pulled him out of a trance.

There was a moth in the bedroom. He had been stalking it. 

5:04 A.M.

highlights

MS awareness month is right around the corner again and in light of that, I thought I'd point to some of the latest research that's bubbling around MS circles.

A foodbourne toxin may trigger MS 

Data presented at a meeting of the American Society for Microbiology adds to growing evidence that suggests a toxin produced by the bacterium Clostridium perfringens [seriously, say that 3 times, I had to look it up twice just to spell it] —  commonly found on raw meat and poultry — appears to attack the same cells that are targeted in MS. It's an interesting link that is inspiring further research. The trigger is still unknown and the theories include everything from environmental metal (from dentistry metals to mercury in fish) to high salt diets or Epstein-Barr virus.

Vitamin D can slow the progression of MS

As mentioned here, researchers at Harvard found that having high vitamin D serum levels at early stages of MS tended to reduce disease activity and progression. 

Stem cell research  is sowing seeds for hope

The idea of blasting my current immune system before introducing stem cells isn't all that appealing to me (yet?) but it's one of the few treatments shown to help those with more aggressive forms of MS than I have. Nerventra, coming from Teva, is also showing some promise.


…and back on the farm, my folks stayed for a lovely 10 days and are now visiting with my aunt before heading home. It's amazing how much of a challenge it is to stick to my regular rest/exercise/nutrition routines when we have company, but I did okay. Maybe a few more hops than usual. I can usually manage to control any food temptation but it's hard to resist the siren song of a cold beer. 

As I mentioned above, May is MS awareness month, and I've started a small campaign for MS Walk pledges. I'm at my initial goal already, which is amazing and reinforces the support I already feel from family and friends. I am fortunate enough to be able to do this walk every year and may try to drag some friends along again this time. I realize some are hesitant to donate to larger organizations and I know a lot of funding goes astray to pay employees and fund marketing, but in the end, the MS Society does good work and is there when we need it. Thank you to those who have donated so far or have dropped me a personal note of support. Here's hoping the universe is listening and all that karma comes back your way.
xo

Happy World MS Day!

What better day to update than today?

With your help, I raised $1340 for the Halifax MS Walk. Thank you all so very much.

The walk was good. It was very well organized with lots of signage and plenty of volunteers. It was a sunny day in Halifax, but the wind (and a few water stops) kept the walkers cooled off nicely. Yellow dog was excited to be out in such a big crowd of people and seeing other dogs. It was her longest trek in months, and all the people + distance + heat = one tired pup that evening.

I have to admit, I was a bit confused at one point at the event. Nance tried to register because of this blurb on the MS Society's site:

On event day, all participants who have not raised funds in advance will be asked for a donation of $20. At this time you will also be asked to sign a participant waiver. 

Upon trying to give her $20 and sign a waiver, she was told by a volunteer that she didn't have to register. If she was walking with someone she sponsored, she didn't have to do anything but walk. Nance had already generously sponsored me, but it seems kind of silly for a fundraiser to be turning away money, doesn't it? It's not like they can keep the general public from walking along for free, so you'd think they'd take whatever funding came to the tables that day. 

No real complaints about the event, though. It was great to have a little posse there with me. I'm happy to report that I have never had to walk alone. I doubt I ever will.

All in all a great day - I got to see family that I don't see nearly often enough, and there was time to show kids that not all big dogs are scary and mean. 

These walks are always a bit emotional for me. People with MS can choose to wear a red participant bib and every time I'm at one of these events, I find myself wandering the venue alone to take a look at the red bibs. One thing I've gained from these events is the knowledge that we MSers are of all walks of life. It's a hidden disease for so many, which makes awareness that much more important. This year, a lot of the red bib wearers were young, fit, and looked vibrant and happy. Some walked with their children. Some walked with their parents. Every one of us had faced that same diagnosis phone call or doctor's visit. None of us were broken by it. 

Goal met!

Thanks so much for supporting me in the MS Walk. I am touched by the generosity of those around me.

Very fortunate.
xo
N.

awareness

Next weekend, I am making the trip to Halifax and have decided to do the HRM MS Walk while I'm there. 

I've recruited Nance, yellowfoot, and possibly one of my many relatives in the area to join me for the walk. [Sidebar: I asked her if she wanted to meet up for a beer while I'm in town and then did a switcharoo and asked if she wanted to walk 7 km instead. My bad. I hear cold beverages are refreshing after walks.] 

In preparation for the event, I shot up my fundraising flare yesterday and am nearly at my goal! I have 9 days to get the remaining $45, so fingers crossed! I have a fantastic support system and they/you definitely come through for me for this cause. I get all teary and overwhelmed when people donate on my behalf. I hope you guys know how appreciated your gestures are. See? Teary.

May month comes with a lot of MS thinkery for me. Campaigns are cleverly tagged with mottos about "raising awareness" because it's become gauche to say "raising money" even though fundraising is the major player in organized events. What does it mean to raise awareness? I have MS. What awareness am I working on?

As I'm writing this, my friend Brian got me closer to my end fundraising goal. I haven't spoken to him in person in over a year. Yesterday Mary donated, and I'm fairly certain we haven't spoken face-to-face since the mid 90s. My point? If I put my face out there publicly as "someone with MS" great people like this get extended the opportunity to help us. We are humanizing MS. Showing the world that people with MS cover all walks of life. Hiding MS is no longer an option. To get the help we need, we need to shine the light on that patch of darkness.

This kind of personal awareness helps create and maintain support initiatives and educational programs on the community level, not just find research. By connecting real faces - our faces - with the disease we raise the level of compassion and understanding among those in the non-MS population. Those people volunteer and become the backing we need to work on employment measures, caregiver support and an endless list of other services that are desperately needed. 

I can say for sure based on my work with an MS forum, that not everyone with MS wants to be known as someone with MS. Some see public blogs and fundraising as putting the focus on the disease rather than the person. There may be some truth in that, but I'm pretty sure my friends and family still see me as a real person and not just a walking creature of demyelination. For me, this is my way of saying that I have MS and people with MS are real people who don't always have the means to advocate for themselves. I don't think I'm doing anything selfish or all that courageous here. I just want change and sitting on my ass and doing nothing gets me nowhere. 

Even if I stumble, I'm still moving forward.

WALK DAY!

I couldn't have asked for a better day for the MS Walk - the sun showed up, the course was in a quiet neighbourhood, and I had three fun walking buddies...all in all a great time.

I've been doing this for a few years now and I have to admit to being a bit baffled by the disorganized nature of the event here in this city. We didn't even know the walk had begun until we noticed people ambling out of the general gathering area. I don't need a gunshot to get me moving, but a bullhorn countdown would have been helpful!

Anyway, it was a good walk. A little emotional, as they always are for me, but good regardless.

Many sincere thanks to those who supported by pledging me, or by just offering kind words.

xo

woohoo!

I hit the fundraising goal I had set for myself for this year's Walk for MS!

I'm at $1105 and counting!

I love the people in my life.

Thank you all.