Thursday, April 29, 2010

a moment

If there is any likeness between my life and a run through a washing machine, I am currently fully immersed in the Agitator cycle.

The events of the past few weeks have upended my comfortable life and catapulted me into new, exciting, and uncharted territories.
  • I am leaving a job I have been with for more than five years and moving into an amazing new role within the same company--all the while attempting to document and transition responsibilities as best I can to make life easier for the team I'm leaving. I'll be moving away from my full-time home office status to a split between corporate offices and my home office.

  • I started reffing soccer games for the co-ed recreational league in which I play (and while that may not sound like a big deal, you should try running around a field for an hour having 15 people question, challenge, and refute every word that comes out of your mouth--quick way to realize the ol' skin needs some toughening up--and FAST).

  • My parents sold their place in Florida and are slowly transitioning to full-time Iowa residency--a move that has resulted in a handful of wonderful heirloom furnishings for my home (some cleaning, re-arranging, and donating of old pieces is definitely in order).

  • The unseasonably warm temps of spring in the midwest appear to be sticking around, and I have a window full of rapidly growing plants--with little more than an idea of where to put a garden and a list of physical "to do's" to get them moved outside.

  • My inability to say "no" to any of the fun soccer teams I play with has me gearing up to be on the field 5 fun-filled days per week.

  • My dogs constantly remind me that just because my routines are changing doesn't mean I can neglect them in the process.

These events--large and small, exciting and at times a little scary--have me traversing chaos, hurtling fast-forward through time, squeezing every last minute out of each day to stay on top of things without letting anything fall. In the end, the changes are all positive, but the undercurrent of change is shifting me from one who was knowledgeable and confident in what I was doing to one who has much to learn.

Tonight was the first night in weeks that I have had time to sit back, wash a few dishes, dust the growing mounds of dirt off a few surfaces, and try to restore some sense of order in my home. In the process, I sorted through a stack of mail on my counter from a few days ago. In the middle of the stack I found an issue of the publication my local MS Society chapter puts out. I flipped through the first pages of the magazine, and skimmed summaries of local events and support groups for people living with MS. And suddenly, with no warning... the floodgates opened, my throat tightened, and tears streamed down my face.

I'm pretty sure the outburst can be written off as a not-so-gentle reminder that I could use to catch up on some sleep and let go of some of the thoughts and worries I'm allowing to stress me out. But a tiny little rumbling of ice-cold fear in my belly thinks the tears were a result of a jarring realization. This crazy, mysterious phenomenon that is happening in my body has not hindered my ability to navigate the changes I'm working through today. But it could. It so easily could. All it would take is a tiny little strategically placed lesion--very much within the realm of possibility--to crumble my delicate reality into a pile of scraps and dust, vulnerable to the slightest breeze. A time bomb in my system ticking quietly, waiting for the right moment to explode. A reality I understand much more clearly after my relapse a few months ago.

I guess occasional collisions with these types of fear are expected when you live with MS. These fears are eloquently described in an amazing post on Wheelchair Kamakaze's blog, and tonight's temporary shift in perspective seemed like the perfect opportunity to share it.

Wednesday, April 14, 2010

happy tattaversary to me! (a very long and tangential post)

I can hardly believe it as I'm writing this, but my introduction into the club of the inked was one year ago today. A year! 12 months. 365 days.

So much has happened in the last year, and yet it seems like it was just yesterday that I was sitting in a room absorbing my first neurologist's words: lesions, myelin, optic neuritis, oligoclonal bands, relapsing and remitting, multiple sclerosis. Wow. It has been a whirlwind, and many things have happened over the course of the year to shift my perspective, only to turn around and shift it again. And I'm definitely in a better place because of it.

One of the biggest lessons I have learned is that I am not invincible. For several months after my diagnosis, I held on to that sense of invincibility. I honestly believed that I would be among the few lucky patients who would have a "dormant" version of the disease that would rest quietly in my body until I was getting on in my years, when the symptoms would be little more than the other aches and pains I would experience with age. Reality bitch-slapped that notion right out of me when I had my first relapse, just 8 months after my diagnosis. Too soon.

So now I know it can happen, and the odds are that it will happen again. Sometimes when I think about that, I can see down a path to a very dark place, where I feel like I am competing against time. When is my next relapse coming? And what if it does more damage than the first two, and impedes my ability to walk, or to see, or something else I have taken for granted thus far in my life? And for a moment I can't catch my breath, because there is no way of knowing the answer to these questions, and the unknown can be scary as hell.

And then I stop myself from moving toward that darkness, and I re-frame. If, in fact, the worst-case scenario does happen someday--if I lose my vision, lose my ability to walk, or worse, then what will I regret about today? Was there something I missed out on? Something I took for granted? What can I do to make sure the answers to these questions is "no?" So I will myself to experience--to do, to learn, to hope, and to enjoy.

I push myself to be very physically active, and to enjoy my activities and improve my skills. I play soccer, I run races, and this year my goal is to incorporate more cycling into that equation. As part of that initiative, I signed up for the MS 60 mile bike ride in Minnesota. (Click here if you're interested in making a donation, or finding out more about why I decided to participate in the ride.) My BFF Cindy signed up to ride with me, and she said she'd ride right alongside me, even though I'm guessing I'm going to be pretty slow (relatively speaking--she's a tough cookie when it comes to endurance competition, and she knocked out a very impressive time in a duathlon last year).

This brings me to another point I have been meaning to bring up in this blog for a very long time now, and it seems only appropriate to mention on the Tattaversary. I am not sure I would or could be in such a good place right now if it weren't or the amazing support system I have in place--my family (including my immediate family, my extended family of aunts and cousins who I keep up with now more than I ever have before, and my bonus family of my brother's in-laws in Utah who I know keep up with this blog from time to time), my friends (both local and long-distance), my co-workers, and my community. I am constantly surprised by the wonderful ways they support me, through the simplest and grandest of gestures.

So to those of you who read this blog (and to those of you who don't, although you will likely not see this shout out), thank you. You are all amazing people, and I am damn lucky for that.

Sunday, April 11, 2010

checking in on the seeds

A few weeks back I posted some pictures of my window of seedlings for the garden. I'm pleased to report that every single species I planted has been accounted for with rapidly growing green sprouts.

With the amazing weather we had today, I was able to get outside to do some of the preliminary prep for the garden--transplanting a lilac tree, moving a few plants around, and mentally planning some of the garden spaces. I'm hoping these fun projects will yield a bumper crop of delicious veggies... fingers crossed :)

Here are some snapshots of the seedlings' progress thus far... (LLB, sorry for the delay--but this is in response to your request :)

Saturday, April 10, 2010

new travel experiences

Last week I traveled to D.C. for a work conference. Having already made my inaugural trip with my medication in November, I figure it would be smooth sailing. And while I didn't encounter any significant problems, I did gain a few new insights through a couple of "hiccups" in my journey.

1. When navigating through security at MSP, I learned that in order to clear the security checkpoint, the ice pack in my medicine travel case must be frozen. Certainly not an issue on the outbound flight, but how's a girl to keep an ice pack frozen in a hotel room without a freezer?

2. Hotels do not simply make freezers available to guests with liquid temperature regulatory requirements (at least not the one I stayed at). In fact, it was somewhat difficult finding a solution. It was only after several repetitions of the story to the front desk staff, along with a copy of my Doctor's note, that they were able to put my ice pack in the restaurant freezer to get it frozen in time for the security pass on the way home. I recognize that this is a good thing--the hotel has health code requirements and guest safety at top of mind (they did not know what the ice pack contained). I would be unsettled if it were any other way. However, it is a good lesson in how to handle the issue in the future.

3. The security line at Reagan National Airport in D.C. has a separate line for "families and travelers with liquid medications." I consider myself a relatively savvy traveler, generally flying several times per year. Between my travel experiences and the fact that I work in the field of travel, I consider myself to be well-versed in how to navigate through a security line pretty efficiently. However, my designated line easily doubled the time I would have spent in the other, more fast-moving line.

None of these new findings are anything more than minor pains in the butt, but good information to keep in my pocket for future travels. And in the event that someone reading this is planning for their inaugural travel with injectables--hopefully something here will be helpful.

In the meantime, some pictures from my my travels...

Above the doorway at the Old Ebbitt Grill

Street scene at dusk

And finally,Delicious treats for weary travelers.

Saturday, April 3, 2010

old hat, new look

It has been nearly a year since my initial diagnosis, and to mark the milestone I thought I'd update the blog with a new look. I figured some sort of update would be appropriate, since I'm slipping to about one post per month these days...

I do promise to post a few new items in the next week or to, leading up to my anniversary on April 14. Until then...