Thursday, December 30, 2010

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 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!

Wednesday, December 15, 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.

Monday, December 13, 2010

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!

Thursday, December 9, 2010

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!