Step right up, get your tickets to some GOOD NEWS...

Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:

• All previously active lesions are now officially inactive (yay)
• All previously "questionable" lesions are no longer present (yay)
• I have no new active lesions (yay)

Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. 

I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. 

I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). 

I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. 

And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? 

Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! 

Nope. Didn't do it.

So I was all gung-ho to participate in two separate MS Walks this weekend. And didn't do either one.

I'm telling you, fatigue is a sum-bitch.

I got home from my vacation Monday night. Exhausted.

Tuesday I spent trying to catch up on basic post-vacay stuff like shopping, laundry, email, etc. Of course, everything now takes me a lot longer than it used to, and I was wiped out by the prior 14-hour travel day.

So Wednesday rolls around and I'm at the hospital all day with my mom who had major shoulder replacement surgery (she rocked it!).

Then Thursday rolls around and half my day is lost to previous obligations I cannot get out of, though by all rights I should not have been driving a quarter of the water polo team to a venue 2 hours away, especially since I've never been there and I was driving in city traffic. Thank goodness my daughter helped with directions; my brain fog and a migraine pretty much melted my cognition for the day.

Friday rolls around, I'm feeling slightly better. I get a few things done, get my hair done, which is a nice break, then I'm tending to my other daughter's preparations for her weekend of dance recitals. I looked around me, saw all the dirty laundry, the piles of clutter, the fridge without food, and my ridiculously messy office, and I just succumbed to the overarching wave of fatigue that's been holding me in its current all week.

Fugettabotit, there won't be no MS Walk for me this weekend.

Instead, I got up early yesterday, did my grocery shopping before all the rest of the people came, so I could focus on my list, take my time, and not get wiped out by traffic and the general sense of overwhelming I get when I go to the store anymore. Then I ran a couple of errands that were grossly overdue. Then I came home and did laundry and finishing unpacking (did I say I was behind?) and then I took a nap. I overslept from my nap and threw on new clothes, grateful my new hairdo from yesterday was still holding up as well as the day's earlier makeup... I was late for dinner with my MIL and BIL before my daughter's recital! Dag. Went to the recital, which was AWESOME but also EXHAUSTING, especially since my MIL takes so much energy to be around. Very grumpy, demanding, emotionally challenging. I had some problems with speech and doing math in my head when I went to buy flowers for my daughter. I hate that.

So today I'm up at a regular time, have done some laundry, revised my To Do List and have been tackling little this and thats all morning. Already I need a nap and it's not quite 11am. But had I gone to the MS Walk today, I would have been WIPED OUT before I even got there. At least my migraine is gone and I am feeling like my marbles aren't rolling out of my skull today, but the exhaustion is still leadening: my arms, legs, even the top of my head weigh about 100 pounds each, it seems. But I feel lighter knowing I made the right choice.

Thanks to my friends and family for donating and/or walking in my stead today. I guess I have to be fine with being the recipient and not the giver, something I don't always do so graciously or willingly. But this weekend was good practice in putting my health first and following my gut, and though I wish I could have seen friends out there on the path this weekend, I'm glad my day is wide open to a little bit of this and that.

Maybe related? A very well-meaning, lovely friend of mine revealed to me that she knew someone with MS, and that person worked out every day and did just great! Part of me is like, yeah, good for them. Sincerely. And part of me is like, hmm, I bet they didn't have mobility issues and this chronic fatigue that I have. And part of me is like, yeah, right, working out everyday is NOT the cure for MS, people.

This is why we need MS awareness across the masses. MS is not a muscular disease, nor is it a metabolic disease. Exercise and eating right make anybody feel better, but they won't cure MS, and for many with MS, what MS Unplugged hostess Deanna Kirkpatrick calls "the snowflake disease" because of its widely varied presentations, the idea of exercise at all is next to impossible. Even eating at all can be problematic for those with swallowing dysfunctions.

How is this related? Because we need to have more dialog with nonMSers to drive home these points. We need to have practice as MSers in educating people through these mischaracterizations of the disease.

I didn't really say anything in response because, guess what? I was too frickin' tired.

Join me for the SEATTLE AND/OR BAINBRIDGE MS WALKS THIS COMING WEEKEND!

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.

Walk with ME! An invitation for YOU, to join ME, in the battle against MS... it will be fun, I promise!

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.

National MS Awareness Month || Begging...pleading... Join me for the local and/or Seattle MS Walk!

Remember the phrase, "Fire, Walk With Me," from Twin Peaks?

Through the darkness of future past,
The magician longs to see
Once chants out between two worlds:
Fire, walk with me.

It has crept back into my memory as I walk this new MS path. Fire, of course, is orange, the color of the MS Awareness campaign. Fire could be thought of as representing a number of things: the inflammation in my brain, the fire that comes from the solar plexus chakra which is all about creation and drive to charge ahead, the literal fire one feels while taking DMTs for their MS. It makes sense that it should be the slogan for my first MS Walk in which I play, not a participant supporter and fundraiser, but an actual MSer.

I've walked twice, previously, for my friend JS in Seattle after her diagnosis. This year I'll walk in my own community with a team that is already composed of some people I already know, so that will be fun. I made myself a family t-shirt this year with this new slogan just because.

But then my excitement about the event was dampened by the fact that my whole family probably can't walk with me.

It turns out that my youngest is in a dance recital that entire weekend and my oldest may not be able to make the local walk (I still plan to do both the local walk and the Seattle walk this year), so it'll just be me and my husband and however many friends I can get to walk along with me. I still haven't found a team in Seattle, but I think Virginia Mason might have one I could join. UPDATE: I've joined the Benaroya Research Institue team, located here.

It's funny, right as I sit and write this I wonder if I'm putting too much energy into it. Part of me is all "nobody is going to come join your walk or wear your t-shirt" and part of me is all "you have to do this even if you walk alone."

But I don't want to walk alone. And I don't want it to only be my husband and my maybe daughter. I love them bunches but, let's just say it out loud: I'm the cheerleader in the family. I know if I walk only with them I will feel like I forced them to do something they don't really want to do (or have time to do).  I might actually feel more alone walking with them. I know, that seems terrible, but I'm a realist. They just aren't into these things.

So... will you? Will you walk with me? With us?

DETAILS

BAINBRIDGE ISLAND MS WALK (TEAM || ROCK WALKERS)
Date: Saturday, April 12, 2014
Location: Starts at BHS and going through Winslow, as I recall (map online is not working)
Address: 9330 NE High School Rd, Bainbridge Island, Washington (BHS)
Site Opens: 9:00 a.m. - 1:00 p.m.
Opening Ceremony: 9:45 a.m.
Route: 2.5 miles

SEATTLE MS WALK (TEAM || BENAROYA RESEARCH INSTITUTE)
Date: Sunday, April 13, 2014
Location: University of Washington campus, Burke-Gilman Trail
Address: 3870 Montlake Blvd NE, Seattle, Washington
Opening Ceremony: 9:45 a.m.
Route: 4 miles

Links
Here's the link to the local team, the Rock Walkers. Go there, read the stuff there, click on Join Our Team or Donate to Walk MS. And here's the link to the Seattle Benaroya Institute Team. OR... you could go to my local personal page or to my Seattle Walk page to read what I have to say about the local MS Walk here and either Donate To Me or Join My Team.

I hope to nab a few friends to put in some time walking. It's so much fun and the weather is always nice. Donate or not at your discretion. I'm less about fundraising this year and more about teambuilding and building my support network. And heck, the more the merrier! So please consider helping a friend out so she doesn't have to walk alone, with the fire.