Life in the Tundra

I live in a part of the country known for its weather, and not in a good way. The past few days, the idea of hitting even zero sounds warm! Not to mention all the snow and ice and blowing snow and general air of bluster! I'm a little sick of it and wouldn't turn down a tropical vacation right about now!  Here are some images of life on "the tundra" recently:

My niece's playground...a few months of the year anyway!

Driving when the snow is blowing like this can be a little dizzying! 

My brother blowing out his driveway. Note how high the snow is on the right side!

Frost on the car window. Frost can be so pretty!

Not a great picture at all, but the moon was gorgeous in this early morning sky!

Also not a good picture, but later that night the moon was even more gorgeous!
Huge and gold and breathtaking.
If only I had better equipment to capture this kind of image....not to mention skill!

I hope you've enjoyed this peek at my currently very cold surroundings! I hope that if you live in a similar climate that you're inside under a warm blanket with a mug of hot chocolate!  And if you live in a more enviable climate, I hope you appreciate what you have!!

Resolutions, part 2

Oof, getting around to writing this part 2 has taken me longer than planned! A past self would have used this complete-and-total-failure-at-blogging-and-life as an excuse to give up the whole blogging enterprise altogether, but (as you well know from reading this and this) I am choosing to no longer let my perfectionist all-or-nothing tendencies hold me back. So here we are - later than planned/hoped, but better than never - back at it for the promised part two.

The other resolutions-themed stuff I want to talk about is largely a reaction to the January email newsletter from one of my favorite MS bloggers, Kate Wolfe-Jenson of Dancing With Monsters. I adore Wolfe-Jenson's creative approach to life with MS. She uses creativity as positive fuel in the energy-depleting world of chronic illness. (She's even authored a book on the subject, Dancing With Monsters: Chronic Illness as Creative Transformation, which I've not yet read but will certainly review here when I do!)

Back to resolutions. Her January newsletter takes a creative approach to the subject, with wonderful results.  Basically, she explores the meaning of the word and reminds us that resolution has other meanings, including two from the arts world.  In visual arts, especially in the digital world, resolution is about the number of pixels that make up an image. In digital photography, for example, the number of pixels per inch has a major impact on the clarity of the image. So, a great analogy can be that resolutions are (or should be) ways to bring focus and clarity to your life. Resolutions that don't do this will no longer make my list.

My niece and I late on Christmas Eve, shown here with much lower resolution than previously.
This resolution is probably a more accurate reflection of how tired we were at this point!

As a musician, I appreciate even more her second refreshing look at the word resolution. All college music majors spend quite a bit of time in theory courses learning about resolution, or the process of moving from dissonance to consonance. Anyone with even a slightly developed ear instantly recognizes when a chord doesn't resolve, or doesn't resolve well. The reaction - even in those who don't really know why they're having such a reaction - is one of tension. A dissonant chord that doesn't resolve makes you feel tense and there is nothing quite so ahhhh-inducing as a beautifully resolved chord.  So in the life analogy, another great way to look at resolutions: ways to reduce tension in your life.  Old-me resolutions have tended to be so ambitious and rigid and specific (and impossible to ever meet for long) that they added great tension in my life.  New-me is going for the ahhhh-inducing tension reducers!

So, a big thanks to Kate Wolfe-Jenson for this refreshing look at the word.  May all your resolutions (New Year's or otherwise) take a cue from the arts world and bring you less tension and more clarity!

Resolutions, part 1

Earlier this week, I resolved to have a New Year's Resolutions post up by the 1st, so it seems like I've already started my year off with a failure!  Or not...because one of my biggest resolutions this year is to let go of my plans of perfection (like I previously discussed in relation to blogging) and follow through anyway.  A major pattern in my life has been not doing things I want to do and plan to do because I can't do them in the "perfect" way I've envisioned and planned, so I do nothing. Or I give up and stop anything I've started when I fall short of the perfect.  So this year, my only official resolution is to push past my ideas of perfection and just do it anyway, imperfectly.

This will play out in many unofficial resolutions, which I'm not writing down and formally committing to (because that would be part of the old pattern of perfection and setting unobtainable goals).  For example, health.  I'd like to improve here in several areas. (Wouldn't we all?) Discontent about the areas of my health that I can't control has led me to not do much about all the areas that I can control. I need to take more responsibility for my health.  There are the usual stereotypical resolution areas like getting fitter, eating better, losing weight, etc. and these are all areas I can improve on.  I'd also like to become a more empowered patient and get more involved with the MS community.

The idea is that I've known all of the little things that I want to be doing towards these goals for a long time, but I just don't do them, often because of my paralyzing drive for perfection.  So, I plan to try to act on, rather than just think about doing these things, when they come up.  I plan to look my need for perfection in the face and tell it that I'm not going to let it hold me back and just move forward anyway.  Perhaps a little paradoxically, my primary goal this year is not to hit the target, but to keep releasing arrows in that direction.

Expect another post on the subject of resolutions later, as I have more to say on the subject that I think deserves its own post.

Spoon Hogs, But Worth It!

There's nothing quite like the more-action-packed-than-everyday-life holiday season to remind you that you have MS.  I'm always a bit surprised how just a handful of extra activities like spending time with family and friends can totally and completely zap me of energy for days afterward.  I tend to use up "spoons" I don't have, and I pay for it later, but I think it's totally worth it.  I had a great Christmas and was blessed to spend some quality time catching up with old friends and hanging out with my family.

The best part of Christmas is experiencing it with my niece, Kylie.  There's nothing like having a kid around to remind you of the magic and joy all around you. Here's a shot of us chilling out after a late night of food, fun, and gifts...like this cool new pink guitar she got from my mom. I'm pumped to learn to play a bit along with her.

I hope everyone out there in blog land had a wonderful holiday season and that you're able to fit in some rest as you enjoy the last few days of 2010!

On Blogging

Another post so soon? Could it be that I'm actually going to make this blog happen? No promises, but I'm going to try. I thought I'd share a few words about why getting this blog going has been a bit of a struggle.

The obvious one is I have MS! If you're reading this, you most likely know the drill.....fatigue, focus issues, etc. Sometimes putting thoughts into coherent streams seems like an insurmountable task, so instead I just flip semi-mindlessly though the pages of the web.

A bigger issue for me is my perfectionist streak. It doesn't show up in all areas of my life, but often when I decide that I want to do something, I want to do it right, however I might define that. In terms of blogging, I had the idea that I wanted a set design that I was completely satisfied with, including the appropriate collection of widgets and a perfectly selected blogroll. Well, I'm an indecisive perfectionist and I've had lots of trouble deciding on various design elements as nothing seems to be just right. I became overwhelmed after many little sessions of tinkering and never got around to making decisions....or any actual blogging. As for the blog roll? There are a LOT of MS blogs out there! There were a few I had read off and on in the past, but since I was going to do this right, I decided I needed to comb through the entire list and find the perfect list of blogs that I wanted to keep up with. Once again, I became overwhelmed pretty quickly and never got around to much blogroll-creating or blogging. And I felt it important to post regularly, on some sort of predictable schedule, but the idea of a set schedule felt stressful and again, overwhelming.

So, I'm fighting my nature and trying to let go of my vision of perfection. I'm not satisfied yet with the design, but here I am anyway! I'll tinker here and there along the way. And as for the blogroll? Doesn't exist yet, but I'm not letting it stop me. I have, however, made significant progress in narrowing down the list. It's been a little tough to decide how to rank and rate blogs, but I'm getting there. I tend to enjoy reading the musings of bloggers who write pretty regularly, write well, have a nice mix of MS and life, and have a more positive outlook. I've had to remove from my list blogs that dogmatically preach THE cure or answer or solution to MS woes and those that are ALWAYS negative and depressing. Soon, my blogroll of recommended blogs will adorn this not-perfect-but-I'm-okay-with-that design. And while I still want to post with regularity, I'm not going to require a specific quota or set schedule of myself.

Finally, on a more philosophical note, I've struggled with whether spending time and energy focusing on my MS is necessarily healthy. I don't want to be defined by the disease, and it seems like writing a blog about being someone with MS is at least pointing in that direction. I guess I feel like MS has forced itself into enough of my life already, so why should I purposely add to its voice? I still haven't quite answered this one, but my MS muse tells me that it's a matter of perspective. The refrain of "I may have MS, but it doesn't have me" is a common one in the blogosphere, and I think this perspective is healthy, so I'm adding my voice to the chorus. Also, I've been hesitant to really interact with other people affected by MS (for similar philosophical reasons, I suppose) but in spending time reading so many MS blogs, I've found myself inspired to push through my hesitancy and fears to join and interact with a group of spirited, funny and intelligent fellow humans, who just happen to have MS.

My Tysabri Treats

Grabbing a delightful infusion nap.

I love infusion days! This might surprise you. After all, who likes the idea of getting stuck with a needle and hanging out for a few hours as a (potentially dangerous) drug drips into your veins? I admit, there might be a few downsides, but for me there are a wealth of upsides to that Monday that comes around every 28 days.

First of all, I'm extremely grateful for the drug itself. Yes, the risk of PML can be a little scary, but for now anyway, the benefits outweigh the risks for me. Before I started Tysabri 3 1/2 years or so ago, I was having relapse after relapse. It was almost like clockwork, every month or so. Lots of bad stuff was going on: serious problems with walking, balance, and more. Shots weren't helping and things were not looking so great until my neurologist suggested I try Tysabri. I haven't had a relapse since! So, I am extremely grateful for Tysabri, especially when I imagine where I might have been right now without it.

When I began Tysabri, I had to travel four hours (one way!) to get infused. Super-supporter and trooper that she is, my mom faithfully drove the 8-hour jaunt every month. The trip, of course, required eating out, and since I received my infusions in a much larger area than I lived in, it was an opportunity to dine at some of my favorite places that I normally didn't have easy access to. Thus began the tradition of the Tysabri Treat. This usually took the form of lunch at Panera and a delicious smoothie from Jamba Juice. Mmmmmm. For the last year or so, I've been able to receive my infusions much closer to home. Sadly, no more Panera or Jamba, but the Tysabri Treat lives on. Before the infusion, we have lunch at a fantastic Thai restuarant and afterward pick up a Spicy Dark Chocolate Mocha or similar treat from Caribou. Especially as someone who doesn't eat out all that often, this little tradition of associating Tysabri infusions with a little treat makes me happy.

Now, on to the infusion experience. Infusion nurses tend to be super nice people. There are a few nurses in particular I rather miss from my old infusion center, but the gals at my current place are all quite friendly too. Nice people are always a great thing to have in your day. Nice people eager to bring you juice, cookies, warm blankets and more? Even better! Next, hospital beds are pretty awesome. I adore being able to adjust the height of my head and legs. I'd totally love to have one at home. I frequently fall asleep during my infusions, and it's often some of the best sleep I get! When I'm not sleeping, there's another bonus: tv with cable! I haven't had this luxury in years now, which is just fine as I watch the things I want to watch on hulu and netflix, but every now and again, I love the option of just scanning the channels or settling in for a little HGTV.

Finally, infusion days almost always remind me how very lucky I really am in the health department. Sure, I have an incurable disease and quite a few associated little problems...but it could be so much worse. I get my infusions at a cancer center, and I'm the only Tysabri patient they see. So many of my fellow infusion-getters are in a much more dire health situation than I am. And many of them suffer myriad unpleasant symptoms as a result of the infusions they get. I usually have a headache for a few days after my Tysabri, but it doesn't take my hair or send me running to the toilet! Seeing the bravery and strong spirits of so many of these patients always reminds me to be grateful for the health that I do have and for the drugs that do help me.

This positive piece of art hangs in the waiting room at the cancer center.

Sure, there are a few unpleasant needle pokes, but overall, Tysabri days are good days. I encourage all of you to use the opportunity of getting an infusion, or giving yourself a shot, or any other disease-related activity, to give yourself a treat and/or to find the treats that are already all around you!

Guest Post by my Mom!

My mom has been regularly encouraging me to start being an active presence on this blog, which just hasn't happened yet despite my best intentions. So she took it a step further by writing a guest post! Hopefully her jump start will serve as some inspiration for me to start posting regularly. My mom has always been my biggest supporter and I know my MS has had a major influence on her life as well, so I'm thrilled to share with you a bit of her perspective here:

I was with Kayla when she was given her diagnosis of MS. It was hard to hear and there were tears. What would tomorrow hold? As far as I knew, there had not been anyone in our family history with MS. Where did it come from? Why Kayla?

I checked out every book I could find on MS at the library. Everyone I knew had a story to tell of someone in their family, or someone they knew, with MS.

Kayla has chronic pain and numbness in her feet and legs, mostly the right foot, and sometimes in her hands. She says it’s difficult to describe, but it’s akin to the feeling of frostbite, or a burning. When it’s really bad, I can see the pain in her eyes. I can’t feel her pain, but it hurts my heart. The pain is always there, though more muted at times. She’s an inspiration because she doesn’t let the pain define her life.

Kayla’s neurologist believes tysabri is the best course for her, and she hasn’t had an exacerbation since she started the infusions three years ago. The progression of the disease has slowed, though her MRI’s show the MS is still active. As for me, I’m concerned with the possibility of the brain infection, PML, and all the unknowns of the drug. Ultimately, the decision is Kayla’s. But, I’m her mom and I worry. Originally, Kayla was not to be on tysabri longer than two years, which would increase the risk of PML. I cried when she told me she was going to continue the infusions. I do know that it’s not about me though!

I’m thankful that Kayla’s MS was diagnosed early and that she has a good neurologist. Kayla’s tomorrows are very promising!