October 24, 2014
As my body recovers from my recent Tecfidera debacle, and I’m able to eat more complex foods, I’m trying to really focus on a whole foods diet.
See, most of the time–about 75% of the time–I’m good. But the rest of the time, I’ll come home from work or the gym and think, “I want something to eat NOW. Not 15 minutes from now, when I’m done cooking. NOW.” You ever get that feeling? And, unhealthy (or less healthy food) wins out, again.
So I decided to put an end to it all. I made various components that could go into healthy bowls during my week. Brown rice, drained and rinsed a can of black beans, sauteed some kale with garlic salt and onion, (I still need to steam the broccoli–later today; and I also still need to bake the sweet potato chunks) and the best part? A creamy curry sauce to top it all off that happens to be vegan/plant based. Here’s the recipe for the sauce. It goes on everything, including a spoon.
I now have these components in containers in the fridge. My first bowl that I ate (was crunchy and full of ceramic… anyway…) I also topped with a few sliced tomatoes after heating up, as well as some avocado that I had left over. Really, anything goes with these! And now that I have the parts, it goes together in less than 5 minutes. I think the ravenous beast in my stomach can wait that long.
October 21, 2014
Ugh. Unfortunately, I’m having to ditch Tecfidera as an option.
I was on-again, off-again with side effects. Because of my multiple abdominal surgeries earlier this year, my doctor said that Tecfidera might not be the best drug for me, but it was the lesser of evils. The main listed side effects are flushing (of the face) and diarrhea.
Because of my situation, she recommended that my ramp-up onto the full drug be at a slower pace. Most people start out with half of the therapeutic dose (120 mg twice a day) for a week before going up to the full (240 mg twice a day), but instead, I took the 120 once a day for a week, and barely made it onto the twice a day. I was wondering, given my side effects, what the full dose was going to feel like?
(I kept telling myself, though, that all I had to do was to make it through these awful symptoms for the first four weeks or so… and if I follow the normal pattern, it would taper off. Hopefully. But then, four weeks seemed too long to not really be able to eat.)
It took a few days, initially, for the drug to take effect, but even on the 120 once a day, I had pretty major side effects. I had stabbing upper GI pain. Never had any diarrhea, and only minor flushing. I couldn’t even sit down enough to drive, the pain was so bad in the front of my body. Initially, I was able to calm things down through medications to reduce the side effects (something for the stomach pain, a major antacid, and allergy meds–since the acid fumes from my heartburn were so severe that they were causing hay fever-like symptoms) but I never got back to baseline. Then, I added the second pill, which was initially fine, but the next day, stabbing pain like you would not believe.
Luckily, my specialist agreed with me that this is harming my quality of life, and told me to stop straightaway. It took several days for my stomach to get back to normal.
And at this point, which MS drug is right for me? I still don’t know…
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! :)