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!

Hookworms???

I sometimes like to fall asleep listening to podcasts of NPR's This American Life. It's not that I find Ira and company or the material to be boring (usually quite the opposite) but I find that I will usually drift off by the end of one of these shows. If you're not familiar with This American Life, I highly recommend it. But on one recent such night, instead of drifting off, I was startled awake by a somewhat disturbing and entirely intriguing story with an MS connection.

It was Episode 404: Enemy Camp, and it originally aired in April 2010. Act 3 of the show tells the story of Jasper Lawrence, a guy afflicted with pretty severe allergies and asthma. Lawrence learns that people infected with hookworms tend to not have allergies or asthma or any other autoimmune diseases like MS or Crohn's Disease. So, naturally, Jasper decides to get himself infected.

Before I go further, let's take a look at this miracle cure:

Cute, eh? These little guys enter the human body through the soles of your feet and make their way to your intestines, their preferred homes, where they feast on your nutrients and your blood.

Back to Jasper. After discovering he couldn't purchase these critters anywhere, he hopped on a plane to Africa and spent some time walking around bare-footed in the latrines of various villages. To his delight, he did pick up some little friends and he did indeed find that he no longer suffered the effects of allergies and asthma that had plagued him for years. He then realized that he had a gold mine inside of him and as he puts it "literally crawling out of [his] feces!" So, he decides to harvest the worms from his own waste, clean them off and sell them to people with various autoimmune maladies so they too can experience hookworm happiness. Believe it or not, he does get dozens of takers. He's baffled, though, why he doesn't have people lining up at his door.

Well, Jasper, here are a few reasons. 1. See above picture. Sure, I can accept the whole thing about there being good bacteria in our guts that are helping us, while also knowing that generally bacteria is harmful to us. But something about half-inch wriggling worms with fangs that would make all those vampires so popular right now jealous is a bit harder to swallow.

The next issue. Have you ever seen pictures of African children with hugely distended abdomens? Hookworms were the cause. Our good friend Wikipedia also tells us that hookworms are "a leading cause of maternal and child morbidity in the developing countries of the tropics and subtropics" and that they cause "intellectual, cognitive and growth retardation, intrauterine growth retardation, prematurity, and low birth weight among newborns." In their defense, hookworms are not usually linked to mortality, and the most common symptom is anemia. In sum, there are significant causes for concern, I would think, before swallowing any of these magic little bugs.

And last, a very complicated issue that anyone with any incurable disease or condition is likely familiar with. There are lots of "miracle cures" out there for pretty much everything, and someone's neighbor/cousin/brother-in-law's vet's fiancée/etc. has been cured by one of them. Good-intentioned people then go on to suggest to us, the ill, that we simply try it too. Simple. Or not. As patients, we have to make a decision on where we stand on the whole Western medicine vs. Complementary and Alternative Therapy vs. experimental therapies divide. We have to decide whether to trust our doctors and follow their recommendations or to try anything and everything or to land somewhere in between. It's a tricky terrain to navigate, and this could easily turn into its own post (and probably one day will) . But wherever you fall on this spectrum, most people will agree that scientific testing is at least somewhat important for making decisions.

And, believe it or not, there are actually doctors and scientists studying the hookworm as a potential treatment. There are clinical trials wherein patients are infected with hookworms. And some results have been promising. You can read about a study focusing on MS here. The basic idea about how the hookworms work, by the way, is by putting a damper on the immune system. The thought is that it will lower the rate of relapses because of the immune system trickery the worms cause. But bottom line is, the testing process is not over, and many of us have chosen to trust in the process. The results of the MS-specific study linked earlier will be available fairly soon: 2011/2012.

After the initial airing of this show, the FDA swooped in and shut down Jasper's little lab. A truly passionate hookworm advocate, though, he decided to flee the country and continue to harvest and sell the offspring of the little critters that keep him from sneezing. On his website, you can read more about Helminthic Therapy, as I guess this is called, and even find out how you can try out some of the worms. (You'll need to travel outside the country to receive the treatment.) The website is: autoimmunetherapies.com.

I will certainly continue to follow this situation. I hate the idea of being infected with hookworms (REALLY hate it), but I have to admit that I find some of the research and the science compelling. If Helminthic Therapy becomes an approved therapy for MS at some point and my doctor recommends it, I would probably consider it. But sorry, Jasper, for now I'm staying away from anything crawling out of your feces.

So, hookworms. What do YOU think???

my unlikely muse

In my family, we often refer to my MS as our uninvited or unwelcome guest. The disease is undeniably a part of our lives, and we would all certainly prefer that it wasn't. However, the disease has another, more positive, presence in my life: it's my muse. It is a source of inspiration and thoughts that probably never would have entered my life otherwise. I've always tended to bristle a bit when I hear people describe various diseases, maladies, or circumstances as great gifts. I still have a bit of a problem with that description, and if MS is a gift, it's one I'd like to return.

But I get it now. The MS itself is not a gift and is not something I'm grateful for. But the part of the MS that serves as a positive source of inspiration in my life is very much something I have gratitude for. I can't promise that this blog won't contain any of my laments or worries related to this disease, but I do promise that this blog is written under the guidance of that positive place I have found: MS as muse. I hope to "re-gift" my MS into a positive force in my life and the lives of others. Thanks for reading!