Thursday, May 15, 2014

One year MRIs TOMORROW...



About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...

We will be looking for the following in my films:
  • Lesions that used to be active but are now smaller and/or inactive (yay)
  • Previous "questionable" lesions which are now smaller and/or inactive (yay)
  • New active lesions (boo)
  • Old lesions that are STILL active and the same size or possibly larger (boo)
  • Previous "questionable" lesions which are larger and/or active (boo)

This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane.

If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily).

If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work.

But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...

Wish me luck!

Tuesday, May 13, 2014

CHAOS MONTH: a 4-week contest to see who is stronger... Me or the MS


Let me give you a bulleted snapshot of the next four weeks in our household. The articles marked with a triple asterisk*** indicate areas where help would be nice to receive, but the odds are only 50-50 that we will get any, even if we ask for it. Red text indicates high stress events; green text indicates... oh heck, who am I kidding... it's all red text!

I will:

  • get my annual MRI (spinal and brain, so about 1.5 hours in the White Tube of Death) to see if my MS meds are working or whether my MS has progressed despite all these meds. Your guess is as good as mine.
  • participate in a grueling day-long neurocognitive test to establish a diagnostic baseline so, in the future, if I lose my mind, at least I can prove it clinically (not really kidding, this is all about qualifying for disability down the pike)
  • find out if I need to get wrist surgery for my arthritis/carpal tunnel issues
  • provide some of the only reliable transportation that my daughter's water polo team ever gets to their far and away games (50-75 miles one way) over multiple days*** (at least I enjoy doing this when I don't have a migraine... but what in tarnation will they do next year without me? Seriously? and I'm not even a captain's mom!)
  • study for and take my sleep health educator credentialing exam*** (I am getting some help but it's really that I don't have any quiet time to even study)
  • prepare to learn an entire new electronic medical records system - which has the added reputation of being WONKY - but must pass proficiency to keep my job
  • continue to work as many hours as I can (schedule has been highly unpredictable since February); listen, not knowing for sure when you are working (until 4pm that day) is stressful, peeps
  • start pulling together all the communications for the sleep society fall conference, including blogging and website relaunch and maintenance (oh sure, Murphy's Law doesn't apply at all here, right?)
  • plan a graduation party as well as get announcements and invites out and create a Brag Board and slide show for my daughter
  • finish two essays related to sleep medicine
  • try to keep up with several blogs
  • complete my sleep health clearinghouse website, which is woefully behind in production

My husband will:

  • perform in several private band gigs as well as our hometown parade
  • travel to Dallas for the annual business conference
  • power wash, restain/repaint the deck and complete other major home maintenance repairs
  • set up for the graduation party
  • continue to address mother's transportation and medical issues*** (we just had her SNF up her services so she will stop calling us for things they can do easily without her needs completely blindsiding us on a daily basis)

My oldest daughter will:

  • complete her last season of high school water polo, which includes wild card and state tournament games covering 6 full days
  • attend the dreaded senior salute/end of season banquet. This should be a positive experience, right? Don't get me started on the debacle that overlooked her as team captain just a year ago, and the heartbreak and ego-swallowing and self-restraint all of us here at home have had to endure over the last 12 months as a result.... Once bitten, twice shy, as they say. I'm afraid that all the work she's done for this team will just result in her getting ignored and unacknowledged like she's been ALL FRICKIN' SEASON by at least one coach. This includes her serving as an excellent leader despite not being picked as captain; being perhaps the finest team player they have (and not the hot shot who is in it for the personal glory); sharing what she learns in separate clinics with her teammates--and it shows, in the games; and recruiting nearly 90% of the current team, quite a legacy. I'm just asking the Universe... just this one night, can she be gifted an opportunity to shine that's all hers to enjoy and deserve? Can it be a chance for her to cry tears of joy, for a change? Everyday has become a bittersweet teachable moment this year... it wears on her, on us. No wonder she wants to get as far away from our small town as possible... her experiences beyond the home team have been positive and encouraging and have made her feel like she matters. Here at the home pool? Not so much. And yes, it makes me angry to see someone get overlooked who deserves better.
  • attend prom (thank goodness she already has a dress!)
  • interview for a scholarship
  • attend the senior awards banquet (at least they will celebrate her accolades there)
  • graduate!
  • start Junior Olympics water polo training in earnest (4 days a week at a pool 50 miles away)
  • pick up her lifeguarding job when polo season is over
  • start physical training to be ready for Div I level water polo in September
  • practice driving and get her driver's license

My youngest daughter will:

  • attend the band end-of-year-banquet (which she also organized)
  • vie for color guard captain title for next year
  • complete another 4-day drum corps camp
  • play in the band for graduation
  • perform the winning show with Winter Guard one more time for the public
  • prepare for a 2-month, cross-country drum corps tour
  • attend a field trip to Wild Waves with Winter Guard

Somewhere in there is the whole emotional underlayer of:

  • dealing with an ailing elderly relative who can't live independently but who won't pay for immediately available services when she can call my husband and ask him to do EVERYTHING*** (by the way, we are not the only relatives that could be caring for her, there are others who just blow off their obligations so they can take their usual 2-3 vacations a year. Yes, I'm bitter.)
  • dealing with the emotions fraught in witnessing my oldest daughter's graduation*** (I can barely even think about this for all the other stuff going on. Yes, I feel robbed.)
  • dealing with the fact that my youngest daughter is going to be gone ALL summer*** (I'm not ready for the empty nest yet and she and I are close as two peas in a pod; what will I do without her?)
  • dealing with the unknowns of having MS*** (I live with this daily, but that doesn't mean it ever gets easier)

As well as the usual and sundry activities of daily living:

  • yardwork*** (getting some help now and the worst should be over soon)
  • laundry (it will lighten just by having one kid away from home)
  • housekeeping*** (gonna start paying for this again)
  • paperwork
  • eating right
  • exercising*** (literally NO TIME)
  • sleeping
  • medicine maintenance

After which I will probably collapse. If I don't before then...

I include all four of us in this overview because, if you are a parent, you know that all that happens to your children eventually happens through you, including the emotional ups and downs, the physical logistics and the problem solving that comes along with it all. Nothing happens in a vacuum, but more importantly, all of our kids' "gigs" are our "gigs" as well, and despite all the things slated to happen over the next four weeks, we will be there for every last event.

Sigh. Still, it's exhausting to even imagine. We have no vacation planned afterward. I am attending a writing conference for 11 days in July which will be like a working vacation, and my hubs will follow suit the next week at a jazz workshop. I will take my oldest to NYC for 3 days as a graduation gift before setting her up in the dorms in upstate NY in late August. If we are lucky, my husband and I might be able to take a night off here or there to go camping. In the absence of that, I hope to resurrect the chiminea and spend as many summer nights as possible staring into campfire.

Please cross your fingers for me that I don't have an MS relapse during the next four weeks. Because there aren't any plan Bs for this kind of stuff.

Friday, May 2, 2014

[Media Resources] Greater Delaware Valley MS podcasts

"Why Everyone Needs a Power of Attorney"
is the most recent program to be
broadcast and archived by the
Greater Delaware Valley Chapter
of the National Multiple Sclerosis Society.
I love to listen to podcasts, especially when they relate to some of my favorite themes or topics, like cooking or creative writing. The podcast/talk radio community was actually the first arena of media I pursued when I was given my MS diagnosis, and it has not been a disappointing journey.

One of the best podcast series I have found for learning more about MS comes from the Greater Delaware Valley chapter of the National Multiple Sclerosis Society. 

These are regular teleconferences recorded live, then archived to be enjoyed by anyone after the event is over. They usually feature one or more specialists in MS or other related fields and they cover, in depth, a particular category, such as "Clinical Trials and Progressive MS" or "Social Security Disability Application Secrets" or "Maintaining Cognitive and Emotional Health While Unemployed."

While their programs serve populations in Pennsylvania and New Jersey, their podcasts can be accessed by anyone, anytime, and for the most part, the content is up to date and relevant.

I have found some really good discussion here that's accessible to anybody who has MS or who wants to learn more about it, and the programs themselves are geared toward a general audience, so there isn't a lot of medical-ese to be confused by. Generally I have found the speakers they use are lively and interesting and personally motivated to do the work they do, so that's a plus.

You can download these episodes for free through iTunes or other podcast hosting services. They usually include a section at the end which is for the live participants to grade the quality of the presentation, so since I am always listening NOT live, three thousand miles away, I know to skip this portion of the end of the presentation.

Saturday, April 19, 2014

Raising ourselves to be warriors: The Water Polo Match


My brain lit up like a roman candle last night at my daughter's water polo game.

Their team got creamed--they expected to get creamed because they are a young, tiny team of about a dozen players from a 2A school that opts up to play at level 3A; the other team, XXX, is the state champ, has about 50 seasoned players and is most definitely a 3A school.

The girls fought hard and their opponents played a really awesome game. This was all to be expected from both sides of the pool. My daughter has played with some of those girls in club tournaments and really likes them. In fact, they are practicing for the Junior Olympics team right now as I write this.

All in all, our team took the beating pretty well, and we had much to discuss on the long drive back home (the opponent's pool is about 1.5 hours away from where we live). There were some bad calls and some unnecessary roughness but, ultimately, our girls accepted the simple reality that they were outmatched. There were churros from Jack in the Box later and lots of music played on the hands free (while I opted for my noise cancelling headphones and back-to-back episodes of Alton Brown's podcast). Eventually they all crashed and had to be woken up at 10:45pm when we finally got home. Ah, sweet youth.

I needed the calm humor of Alton Brown NOT because I was driving noisy teens home from a polo game, but because the winning team's parents were HORRIBLE, and I needed some recovery time and space.

There were about 50 of their fans to our 5 fans. We were SURROUNDED. They mocked our girls relentlessly, in full voice. They repeated some of our girls' field talk, a common form of communication between players, but in condescending voices. They repeated loudly, "Well, this is a ridiculous blow out!" or "We are just kicking their asses to the curb!" with gleeful voices edged in arrogance. They laughed when our goalie could not single-handedly fend off fast breaks that our defense was not fast enough to thwart (and they were trying!).

Yeah, that's right... our 14-year-old goalie, who just learned how to swim and started playing polo officially one month ago, and who is now going to play on a Junior Olympic team this summer, which culminates in a tournament at Stanford this August. Yeah, go ahead, bash the newbie who shows MAJOR promise, why don'tcha?

It was like these people were drunk. (I finally had to look behind me to check. What did I find? Obese, ugly, poorly dressed, toothless White Trash. Parents. Parents behaving badly.)

At one point, I gave one of them the stink eye. She just stared back at me innocently, shrugging "What?" with an evil little glimmer in her eye. Bi-otch.

I texted my husband: "The XXX team parents are shitbags." He texted back: "F them."

I was sitting next to one of the parents from our team, a very calm and collected individual. He was visibly aggravated and even embarrassed, but not by our girls, who were fighting the good fight (they were awesome, actually, we were all of us very proud of them, including the coaches), but embarrassed by how poorly the other team's parents were behaving.

Shitbags, indeed.

Not surprisingly, the worst offenders turned out to be the parents of the toughest girl on the team, who was penalized and ejected several times for drowning, swimming over players, rolling and other brutality offenses. We learned later from the girls and the coaches how she was playing especially dirty and should have been removed from the game.

I am the George Costanza of comebacks (meaning I am useless in this capacity!) and could only sit there and hold my head; I even recited the words "serenity NOW!"--made infamous by George's father, Frank--in a funny voice to myself to try to settle down my brain. All those nerve endings just lit up like sparklers, the strange cellophane-crinkly accompaniment in my ears just barely muting their harsh, voices. This is what happens when I become emotionally stressed. It doesn't hurt, but it's weird and impossible to ignore.

Which, in a way, is a kind of blessing, because it's an immediate message from the universe to "let go." (Hence the Alton Brown podcasts on the long trip home.)

Anyway, as we got up to leave the game (the final score was 15-0), I saw one parent still in the stands from their team who was not part of the bully pulpit behind us. He was not obese, ugly, poorly dressed, toothless White Trash, either. It was obvious he had come straight from work to watch his girl play. He had a soft, nerdy avuncular quality to him that said, "I love my kids and I know you love yours, too." He gave me a sweet, apologetic smile. Right on. There's hope for team XXX after all.

Still, because I'm not nearly as gracious as I ought to be, I shared my text with the head coach; he gave me a conspiratorial wink. Apparently this is the reputation of team XXX. 'Nuff said.

It also helped for me to hear from my daughter that her coach had said to the girls at the end of the game, "There is a reason we don't play like that," in relation to the other team's "dirty pool" moves, and the girls left the game understanding inherently that what he was saying was "integrity matters."

It's always better to keep it classy in water polo, as in life.

This is what the coach has said repeatedly across the four-year span of my daughter's career on his team, and the fact is: it's one of the reasons my daughter has been accepted by an NCAA Division I water polo team... because athletics are never about playing dirty. They're about playing smart, and teamwork and strategy, about knowing how to play an entire game without getting relief if that's what you must do. It's about jumping back in no matter how hard you lost because who cares about a mostly losing season anyway?

NCAA water polo coaches acknowledge this can be a violent sport, but they also drive home the message that it must be played with integrity. High school players with a reputation for dirty tricks (scratching, drowning, kicking, unnecessary roughness, swearing, suit grabbing) do find themselves struggling to find a team that wants them at the collegiate level. No decent coach there has the time or energy or inclination to train these bad habits out of future players.

The only thing that matters is that, wherever we are in life, we strive for our own individual and collective excellence; this is the interior battle we fight every day, not just as athletes, but as human beings.

In my mind, our girls took home the win for the night for that reason. They get it.

As for the other team's parents? Not so much. Their loss AND their children's loss.

The message in this for MSers takes a similar vein: you can give in to the dirty pool of MS, the relapses and trips to the hospital, the emotional hijacking and all the other shitty things that MS could deliver to you, without warning, at any given moment in your life. Or you could fight back by taking care of yourself, having a sense of humor, striving to get out of bed the next day to start again, aiming to be the whole person you are as much as you can make that happen. Sometimes it's a day when the score for us is 15-0 and MS has kicked our ass, but we can still honor our own efforts to beat it. TRYING MATTERS. We can still smile and say, "I'm still here, MS. I will live to see another day and then we shall see what the score is then, hmmm?"

I found out later that my daughter, upon hearing how poorly the team's parents had behaved, sent a friendly message to one of her friends on team XXX, which said, roughly... "Hey, it was a tough game last night, but we appreciated the competition and we learned a lot from you guys. Thanks! However, you might need to remind the parents in the stands that sportsmanship counts there, as well." The girl responded very kindly and respectfully and said she would pass on that message.

They are playing polo together on the same team right now, training for JOs. No hard feelings whatsoever.

My daughter has no idea that she shared this bit of insider info with the very daughter of the shitbags who were sitting behind us in the stands last night.

Hear that sound? It's no longer the crinkling roar in my head, it's me laughing at this interest curve in the road, proud that not only am I a warrior who takes stock in integrity, but I have raised one as well.

Sorry MS, but that's 15-0, in my favor, this time around.

Sunday, April 13, 2014

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.

Monday, April 7, 2014

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.

Tuesday, April 1, 2014

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.