This is an awful trend I’ve been noticing in my life… I’ve been developing fears. Some justifiable, others not. And they’ve been piling up enough that I wonder what’s going to happen next. Especially since all of my life threatening medical concerns of last year, I’ve had the “live life with no fear” mantra, but the inner voice keeps taking over. What’s up with that?

For instance, I’m starting to become a nervous flyer. We hear about the horrible accidents (and attacks) in the news, so whenever anything weird happens with turbulence, or a weird sound, I start getting nervous. But I love traveling, so flying is inevitable. I just keep reminding myself of all of the flights that happen all over the world, with no problems, that you don’t hear about on the news — it’s only a very small percent that have things go wrong.

Another thing I’ve noticed on my past to ER visits (yes, I unfortunately have many) — I now get slightly uncomfortable even with saline drip starting in an IV. Back in July, I had a very bad reaction to a drug given to me by IV, and I think I’ll have a fear of any liquid given by IV for a while, even though I keep telling myself with the saline that it’s something naturally found in the body (and, I’m already in a hospital when they’re giving it to me, so if I were to have a bad reaction, a nurse could be there quickly).

I’m going to try not to think about “what else”, because that would just be begging for more, right? Hopefully since these are all that come to mind, I won’t be adding any new significant fears to the list. (I consider things like “fear of bungee jumping” quite reasonable.)

Not the dance we want to do…

With MS, we constantly fight the battle of losing strength, right? I spend so much time lifting weights, or doing bodyweight exercise, or doing Pilates, to try to at least break even, and even that doesn’t feel like enough much of the time.

Especially when my body doesn’t cooperate, and I have to take time off from heavy exercise. I had a lot of stomach pain problems through September and early October, and even yoga was unappealing to me for many days. But after a few weeks, I was able to get going again, back to my “old self”.

Just a few days ago, I started adding in 30 burpees as part of my exercise routine. (I had to take a few breaks. But I got back to it rather quickly, and finished the 30 within 3 1/2 minutes each time.) I was aiming to do that about 4 times a week.

Then, last Thursday… I have no idea what happened, but I had a pain flare-up again, involving almost worse pain than before. Not being able to take a deep breath. More time away from workouts. It’s an endless cycle.

I don’t think these stomach bouts are MS-related (it’s not slower digestion or swallowing problems, so I wouldn’t call it gastroparesis). So it doesn’t seem fair that something unrelated to my disease is forcing my disease to slow me down…

I’m hoping for an endoscopy soon… to put an end to all of this.

Sorry for the lack of posts… I’ve had WordPress issues on both of the browsers I use (Firefox and Safari), and between both of my jobs, the new business, and taking care of my health, there’s little time to keep checking back to see what works when!

Anyway. About a month ago, when I had the Big Health Flareup (that post comes later, too), a lot of my bloodwork showed my white cell count to be really scary low. Low enough to get the attention of my MS specialist (usually they just blow it off, saying that the slightly lower count is a drug side-effect).

So, they’ve tried me on a no-standard Gilenya dosing which has worked for some: take it on the weekdays, don’t take it on the weekends. (Gilenya works by sequestering some of the immune cells — the white blood cells — in the lymph nodes. This removes them from circulation, but it also prevents them from potentially attacking myelin. Good for preventing MS relapses, but bad for overall immunity.)

I’ve been doing that for a month, and had some follow-up bloodwork done yesterday. But even before I got there, one of the nurses at the MS center called me and said that we need to have a discussion about likely finding another therapy for me.

Sigh. AGAIN?

The first two (Rebif, Tecfidera) I failed because they eventually caused me physical pain (well… Tecfidera caused me pain immediately). This isn’t causing me pain, but it’s apparently destroying my immune system.

Running out of options, here…

Good thing I’m raising money toward a cure every year? Still, it’s not enough…

I’m always talking about finding your life’s passion, grabbing it by the horns, and totally milking it. I do that as often as possible, because tomorrow isn’t guaranteed.

Someone very close to me — probably the closest person to me — recently did that. I’m talking about my best friend, my husband.

You see since the downturn in the tech industry (late 90’s!) he’s been wondering who he is. He’s good at programming, but he’s not a programmer. Not his personality. He’s a techie, but a people person. He got an MBA in his late 30’s, is good at problem solving, worked in health care management, tried to figure out what to do (since he couldn’t deal with the red tape of health care).

Meanwhile, trying to figure things out, he’d been tinkering with the old used Mercedes we’d bought, keeping them on the road, working on a conversion project.

And it dawned on him: why not put the two together?

So, long story short: after months of scouring brokerage listings, an auto repair shop (in Snohomish, WA) fell into our laps, with a manager and mechanics to come along with it. A very popular, very profitable shop. My husband is there working 5 days a week, and is tired, but loves owning a shop that works, with guys who work well together.

He is happier than I’ve seen him in years… and we’ve been together almost 17 years. It’s great!

Sometimes, if you’re trying to figure out what you love, it hits you at the most random times. It’s not always a hobby. Sometimes it’s a new hobby. Sometimes it’s a hobby that you haven’t even tried yet! (Car repair work is new for my husband, only in the past few years…) As I say, if you feel in a rut, try something new — tango, a cooking class, rock climbing… and even if you realize you don’t like it after one session, that’s something new about yourself that you now know. :)

I think? I’m becoming more and more open about having MS. In fact, when I gave my “opening speech” as MC at the fundraiser, I had little problem talking to the audience about my diagnosis, which made me nervous in the past (says the career public speaker).

So, here I am, slowly starting to open up to my college students, as well. I teach nutrition, after all.

Why? Well, I used Taco Bell as a random example the other day, and tripped up, saying that I didn’t know details because I hadn’t eaten there in years.

There was a “yeah, right” from the 30+ students in the audience. This particular group is friendly and supportive, and they work well together. They seem to like me, so I’m thinking it was more joking than anything… but it struck a chord.

I didn’t say anything right there, but I wanted to tell them: some of us care about nutrition not just for vanity (as younger people seem to — as the younger ME definitely did). But I care about nutrition to keep myself working and functional, and it’s worked so far.

I don’t want to open the can of worms during my precious (short) lecture time, but I’m crafting something to say to them in online forum tomorrow. Something to give them new perspective — both on the importance of nutrition for overall health, and on MS patients in general (because they see high-energy ME in front of the class all the time, and they’d never guess I have a degenerative disease).

One more step on the path to advocacy!

dance ms 2015


So, this event that ate my life for… how long? (And I told the band that if it hadn’t done so well, I would have called it quits after this… but how can I do so now…)

People had a BLAST at this year’s Dance MS, which was now 3 weeks ago. The hall was full. Despite a low number of RSVPs, there were a lot of walk-ins. Of course, I had a great time as auctioneer. I took a set off from playing and had someone fill in for me, so that I could mingle.

And… we made just over $5200! Part of that is a small matching donation from a local business, which I am specifically targeting toward a research group at my graduate alma mater (UC San Francisco) who is doing promising myelin repair research.

OK, on to next year… but wondering how I can make it bigger without making the prep my full-time job… (always looking for volunteers! Anyone?)

Yes… it’s been nearly a month since I posted. Between fundraiser (successful! more later), quarter starting (too much in addition to my other job), and dealing with medical things (also more later), I am in above my ears. Oh, and there’s a new business, too? There’s another future post.

All of this activity, and to what end?

I’m still a mostly optimistic, happy person. Though I’m not quite the cheerful, energetic soul I once was in front of the classroom. Things have changed.

As a blogger (eh, sort of), I spend some time each week reading other blogs, and travel blogs are on my radar, as you might imagine. Recently, a travel/lifestyle blogger (whom I hadn’t even heard of — I feel so disconnected, but his ideas resonate with me) was killed in a tragic climbing accident. The news poured all through the blogosphere… But I really appreciated Nomadic Matt’s post — check it out here.

I read it, and thought… wait, just a year ago, I was that person. I was thrilled to have survived emergency abdominal surgeries, and welcomed each day. I took every single opportunity, no matter what. What the hell is dragging me down, anymore? (And I refuse to let MS be my constant “fall guy” on this one.)

Yes. I have a ton of crap going on. And there are a bunch of whiners in this world that have an easier life than I do, but there are also some who have it much, much harder than I do.

And isn’t a lot of our life’s perspective based on our own framing of it, anyway? If we’re positive… won’t we feel at least a little better?

So. Without being a total cheese about it, I’m going to be silly and positive in front of the classroom again, starting tomorrow. Maybe I’m still not thrilled about getting up at 5:15, but — baby steps, right?

(And the online job is killing me. It may have to go, now that we have a hopefully-reliable additional source of income.)


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