October 18, 2014
Spread the word! A new online resource exists for MS patients to come together and chat:
All sorts of information, and lots of chat features. I’ve been participating for a few days, now. We are not alone!
It was started by a few folks up in England, but it’s quickly spreading worldwide. Check it out, spread the word!
October 15, 2014
The few people who haven’t pushed me away, thinking I’m an evangelical preacher, when I talk about setting life-quests, have told me that they don’t have any idea of the quests to pursue. I tell them to sit for a while and think deeply about their interests–if money were no object, what field would they study, pursue, or read about? That often steers people in the right direction.
What you have to recognize, however, is that sometimes even getting to the first step of your quest takes some unpleasant work. Some people are interested in traveling to a foreign country and getting by in the local language. Well–in order to even “get by”, you need to learn even the basics from home (yes, the boring “hello, how are you” phrases). And those people who take on the daunting task of riding their bike across the state? Believe me, they spent a lot of time in the gym, working out, probably on days that they would’ve rather slept late.
But these people all had their bigger goal in mind, and the day-in, day-out drudgery didn’t stop them.
Goals keep us alive. They give us meaning. Heck, they give us bragging rights, too. :) But a goal worth pursuing takes some mental pain to get there (and sometimes some physical pain). Don’t let that stop you from doing what you want to do, because it’s worth it in the end.
October 12, 2014
I’ve been taking Tecfidera for a little more than a week, at a low dose (not the therapeutic dose yet). I switched from Rebif, since I couldn’t tolerate injections any longer.
I knew the most common side effects were diarrhea and nausea. While I haven’t really experienced either of those, I’ve been having a lot of GI problems. Earlier this year, I had three major abdominal/gut surgeries (complications upon complications) and took a lot of painkillers. Seems that I ended up with an ulcer as a result. I calmed it down with some ulcer-healing medication over the summer, but even after a few days of 1/4 strength Tecfidera, BAM! back again. I’m back on the ulcer med, 1-2 anti-reflux meds (depending on the day), and several antihistamines (since the fumes from the reflux are causing postnasal drip). That’s in addition to a bunch of supplements to calm my upper GI, including ginger and licorice root.
I hear that the first 2 weeks on Tecfidera are the worst. The doctor recommended that I hang out on the lower dose a little longer to see if I adapt. I’m hopeful that I do. Otherwise…. what other MS disease-modifying drugs are there for me? (aside from the stronger orals with terrible side effects–let’s not go there)
October 9, 2014
Not long ago (a little over a week ago, heading into the final days of fundraiser prep plus dealing with a problem student) I was noticing more of my usual MS tremor. I don’t get it very often, but it was pronounced enough that I hid behind the lectern while teaching that day. I only shake on one side, but I thought it was still noticeable.
Luckily, I recovered the next day. Whew. Not a flare-up.
But during this episode, I read a short piece about another MS patient who also experienced tremor on one side, which led to vision problems, and weakness, and and and… Later that night, I was feeling a little weaker on the same side that was shaking (my left). And I thought: Am I going into a downhill spiral? Tremor, weakness… what’s next?
The next day, when I was almost back to baseline, I thought about how silly I’d been. We’ve all heard how individualized a disease MS is. You talk to 50 different MS patients, you’ll get 50 different descriptions of symptoms… because there’s that much variability. And I experience my disease differently from the person I was reading about.
I happened to have an off day. All of us do, MS or not. The good news is, we can think positively that tomorrow is going to be a better, stronger day. We can take positive steps (exercise, nutrition…) toward those better days… and keep on having them. Write your own story… and don’t rely on the anecdotes of others.
October 6, 2014
It’s now been 24 hours since the second Dance MS started. (I know I’ve gone more than my usual time since posting, but I wanted to wait until I was done with the show…) And–another success!
Attendance was lower this year (probably because it was a random warm/sunny weekend in Seattle?) but the auction really boosted our earnings.
I was an auctioneer for the first time! I had no idea how I’d do, but I played around with the crowd, and they played back. I got a lot of compliments, and almost no one knew it was my first time. (Guess it helps that I’m a public speaker in real life!) That’ll make my second time around even better!
So how much did we raise? I still have some final checks coming in, but the initial tally is just over $2100–which is more than $500 over last year! I am overwhelmed by the support!
(Thanks also to my support crew of volunteers. You guys are incredible.)
I will aim for around the same time next year, so if anyone wants to head up to the Seattle area and join in (as a volunteer or attendee), hit me up. I’d love to chat more!
October 1, 2014
One more time… it’s this coming Saturday at 7pm, in West Seattle, that I’m hosting the 2nd annual Dance MS with my band.
(And, despite the name, dancing is not required! Sitting and listening is fine… but the name Sit And Listen MS just doesn’t have the same ring.)
Anyway, we’ll be at the West Seattle Senior Center, and I’ll be auctioning off a few items throughout the night, including a big private wine party, and a Seahawks logo football. Good times!
September 28, 2014
If you’ve been reading for a while, you know I travel a lot (50 states, anyone?) and that I enjoy doing it. MS has led me to change my style a little…
My last trip, I was gone for almost a month. We didn’t spend more than 3 days in any one place, and drove a lot. While MS is my constant fall guy and gets the blame for a lot of my symptoms, I believe that MS did play somewhat of a role in my being more tired during the entire trip… though you could also attribute it to three abdominal surgeries earlier in the year, an intense work schedule (I still did some work while traveling), just being older in general… nah, not going with the last one. ;)
In any case, I’m thinking that I should slow down my travels in the future. I used to bop around all over the place, but I find myself wanting more depth than breadth to my travels. Lots of times, I’m disappointed to leave a place, because I never really got the chance to experience it. I get to know the locals as well as see the sights, and 3 days isn’t enough time for someone, chronic illness or not.
So, having to slow down will certainly improve our travel experience! (I only fear the few places I go to and think, “boy, I’m glad I’m not here for more than 2 days.” It happens very rarely… but it does happen. You know what I mean?)
And I’ll be taking care of myself at the same time. Win-win!
September 25, 2014
So many of us with MS have trouble with coordination every now and then… or a lot… I have good days (where I’m totally coordinated!) and bad days (where I walk like I’m drunk…) so I figure coordination is a skill I should work on maintaining.
One way to do this is through DANCING! Now, if you know me, you know I’m much more athletic with my workouts–I’m much more likely to lift weights at the gym than go to Zumba class. But I’ll do it every few months for the sake of coordination! (And heck… I find the joy in almost everything. I love the energy in Zumba groups!)
There are also shorter videos online, for those who don’t have gym access, or don’t want to “shake their groove thang” in public yet. One I found recently is this, from Denise Austin, a 10-minute Latin dance video.
If you’re around my age, you remember seeing Denise on TV in the late ’80’s and ’90’s selling videos, and while you may not be able to get over her aerobics instructor voice, she does have a lot to offer. This video is great because it repeats moves–great for those of us who don’t catch choreography the first time around. Also great for those of us whose coordination is starting to slip. :)
Anyway, this is not the only dance exercise video online, but one that I’ve liked, and I thought I’d share it. Practice your coordination, whether or not you’re an MS patient! :)
September 22, 2014
I read a great quote–can’t remember the details, I’m paraphrasing… but it really applies to MS, or any sort of chronic illness situation:
Just because someone gives you a cactus doesn’t mean you have to sit on it.
No, in fact… I toss the cactus aside as much as I can! (Though I try not to give the cactus to someone else. I’m not that mean. :) )
September 19, 2014
Ah, the 20-year-old version of me would never have imagined this post coming from the 40-year-old me. But I have changed my ways.
Yes, fat is the most calorie-dense macronutrient (9 calories per gram, rather than the 4 calories per gram in protein and carbohydrates). But during the fat-free craze back in the ’90s, when we ate carbs ’til we were sick of ‘em (then ate some more… they were carbs, after all) and… just craved more carbs. But it was OK, as we were avoiding the “evil” fat.
Over the years, it took some convincing, but I increased the amount of healthy fat in my diet. By healthy… I’m talking about olive oil, avocados, nuts. I’m one of those ultra-controversial folks who’ll say that synthetic fats, such as canola, likely aren’t good for us (I’m not a huge fan of large amounts of anything synthetic), and of course, trans fats are something to avoid.
I also eat a reasonable amount of coconut oil–mostly sauteing in it. Yeah, it’s solid at room temperature. But our bodies liquefy the stuff, and it’s naturally occurring. There are still a few studies that have me on the fence about it, so I don’t drown myself it in. (though I’ve soaked my hair in it…)
Anyway. My point in this post is that once I started increasing the amount of fat in my diet–I honestly don’t track grams or percentages, I just eat–my weight has been easier to maintain, and I’ve been healthier in general. I just stick to the more natural fats.
Has anyone else had this experience… or something to share along these lines?