In Search of Healing

The other day I was watching Kris Carr's documentary Crazy, Sexy, Cancer. In it, there is one line in particular that speaks to me. She says that when it comes to illness, "You have a full-time job. You're always at the office of healing." She's exactly right.

I've mentioned before that there is not one minute of one day that I do not think about being sick. I can't help it. There are injections to be made, medicines to be taken. Blood work ups, tests, medicine adjustments, new symptoms, doctor appointments, insurance issues. I talk about it. I read about it. I research. I ask questions. I take note of every little change in how I'm feeling. It's exhausting, and it takes a lot of time and energy. Time and energy that, quite frankly, I don't have.

If you look at my computer you will find an obscene amount of articles on MS, links to diets meant to cure MS, videos on MS, articles and quotes to blow sunshine up my ass and make me feel that if I truly wanted and worked hard enough, I'd beat this. Best I can tell, the best thing for me to do is run around a lot and then go in the backyard and eat grass. And yet, despite all that, I'm still sick. What's up with that?

I often wonder if there's something I'm doing or not doing that could change my situation. And then I question whether or not I really have any control over this anyway. So I'll keep searching. Maybe one day I'll find an answer.

Damn, It's Hot

Ah, summer. A time to bask in the sun, sit by the side of the pool, get outside to play and run around. Well, in theory that sounds about right. But unfortunately, for those of us with MS, the reaction is more like, "Ugh, Summer." You see, MS and heat are not simpatico, even though Vitamin D has proven to be beneficial. See the quandary? Heat tends to temporarily worsen symptoms--whatever they may be. For me, that means bone-crushing fatigue and the entire right side of my face going numb. It's kind of a built in alarm symptom: Warning heat alert! So, no, summer is not one of my favorite times.

Because I can not hide in my house and grow even paler than I already am, I have tried to find ways to counter my heat intolerance. But, unfortunately, the options for keeping cool are not cheap, not stylish, and not comfortable.

What are my options? Well, the easiest is probably the cooling bandana. Yes, I said bandana. As in the thing cowboys wear around their necks. It's bad enough I have this damn disease. I don't want to look like I'm wearing an ascot borrowed from Freddy Jones to combat it. No thanks, I think I'll  keep looking.

What about cooling towels? I recently bought one and it works well. The only problem is, I still can't quite figure out how to wear it without looking like Rocky Balboa. You know, when he had the towel wrapped around his neck. Now, go ahead and imagine my children's horror when I walk into the pool looking like this: 

The priciest of the cooling options that I have found is the cooling vest. It is exactly what the name implies. It is a vest that you wear under your clothes to keep your body temperature down. You fill the compartments with ice packs. You know, kind of an MS bulletproof vest. Of course, I could choose to wear it on the outside of my shirt, leaving me to look somewhat like this guy. Pretty badass, huh? Except I'm a girl, and I would definitely wear a shirt underneath and wash my hair. Well, you get the picture.

Of course, there are easy things I can do to keep cool. But even those are not always all that easy. For instance, I drink plenty of water to make sure I stay hydrated. But that's not always easy, either, considering that my kids continually ask for a drink of said water. Or, a lot of times I'll bring a misting fan with me. For the most part, these fans do a good job--except for the fact that mine are usually out of water or broken. Apparently misting fans are simply a code name to my kids for water guns, and they also have some unwritten requirement that one must grab the fan while it's spinning to make sure that it can stop and then spin again. News flash, kids. They won't keep spinning if you keep sticking your fingers in them  Sigh.

So, while I guess there are a lot of options to help me beat the heat, I still haven't found the one that's right for me. Until I do, you can find me at home. I'll be the translucent creature in the corner.

Brave

Sometimes you have to trickle down through a whole lot of messy to make it to brave. And sometimes that's a very slow and scary process--not knowing where the messy's going or how it's going to play out. Sometimes it seems like it would be a whole lot easier if it was the other way around; starting off brave enough to deal with the things that follow. But life isn't like that. So, I guess all you can do is wait for the brave.

Going it Alone

The other day I registered for the Run MS race. Seeing as I've done lots of races in the last two years--wow, that sounds really weird--it should have seemed like just one more. But as I filled in the registration it didn't.

I got to the section that asked me to indicate whether I was forming a team, was part of a team, or running as an individual. I thought about it for a second, and then marked the box for individual. It was the first time I'd checked that box since I started this whole running adventure. It wasn't because I didn't want to run with any of my partners-in-crime. They are the best part of my running. No, it was about something bigger than that.

One of the things about MS that has always bothered me is the fact that it often makes me rely on other people. I don't like that. I'm independent--always have been. I don't want to admit that I can't do something. I don't want to ask for help. Some would say I'm a bullhead.

So this race in particular is about proving something to myself. A kind of big up yours to this disease. It was me and MS. Head to head. Mano a mano. So you are all welcome to come cheer me on, but this time I'll be out there alone. This time it's personal.

A Letter to My Newly Diagnosed Self

It's been almost 13 years since my world turned upside down with one phone call. Looking back, there are so many things I wish I would have known then. So this many years later, I wish I could go back and share what I've learned on this journey. If I could, this is what I would say:

Dear Me,

I'm so sorry. I know you're world has been rocked and, if I'm being honest, I have to say it will never again be the same. I don't mean that to scare you, but the reality is that you are now different. You will forever see yourself through the prism of your MS. It will be your constant companion. You will wonder at some point every day when and if this unpredictable disease will rear it's ugly head. You will stress over being confined to a wheelchair. And yes, you will at one point or another think about whether or not you will die from this. STOP. Those things are not a done deal, and stressing over what may be will use up a lot of energy that you don't have to spare.

Speaking of energy, get ready for fatigue like you've never imagined before. And I'm not talking normal fatigue. It's "I can't get up and walk to the other side of the room" fatigue. It's "I just slept 12 hours and feel like I didn't sleep at all" fatigue. It's "who put 20 pounds ankle weights on me when I wasn't looking" fatigue. People will say they understand. They don't, they won't, they can't. Just nod your head and smile. There's no way to put what you'll feel into words. You will mourn the energy you once had. Again, I'm sorry. I wish I knew what to say, but I still don't have any good answers.

You will become very familiar with the MRI machine. Try asking them to put something over your eyes before you go in. It helps with the claustrophobia. Trust me on this one. Oh, and don't bother with the headphones. You won't be able to hear anything other than the banging and buzzing anyway.

Most importantly, ask questions. Ask for explanations. Research. Seek out help. It's all out there ready for the taking. Don't be afraid to use it.

Wow, there are so many other things I could tell you, but I don't want overwhelm you. You'll figure it all out in your own time.

NOW, having said all that, listen very closely because this is the important part. You've got this. You will discover that you are way stronger than you ever imagined. You will learn to embrace the freaky MRI pictures of your brains. You will get to a point where sticking a needle in your stomach, thighs, hips or arms no longer makes you flinch. You will learn to fall and not get hurt. You will learn to laugh about all of this. You will do things you never thought you could--even before your diagnosis. You will be awesome. Hang in there. It's going to be OK.

Desperately Seeking Stability

Have you ever seen those stability things at the gym? You know, the ones that look like this:

Well, the other day when I was working out I decided to give one a try. Working on balance is a constant goal of mine since I basically have, well, none. I pulled the balance thingy over in front of the mirror and confidently attempted to hop onto it. Well, I didn't really hop onto it because that would have been stupid and disastrous.

But I stepped on with one foot...and then attempted the other. Fail. I tried again. Fail. Luckily for me, I had placed the disc-looking thingy not far from the mirror--though I'm not sure why I would be stupid enough to do that and watch myself fall all over the place. But I sure was glad it was there so I had something to brace myself against instead of face planting on the gym floor. I do offer my apologies, however, to whoever had to clean all of my finger, palm, and face marks off the mirror.

After about the third failed attempt of climbing onto the balance ball or whatever you call it, I decided it must have been the equipment that was causing the problem. God knows it wasn't  me. So I confidently retrieved the larger, more sturdy looking stability ball, trying to play it off like it was part of my workout regimen. It had a solid base, so logically it would be easier, right?

Wrong. After I fell off the first time, I turned to see the guy working out next to me staring in my direction. I smiled, and returned to my workout. Step up, fall. Step up, fall. I puffed out my breath as if I had just completed an intense workout and returned the equipment to where it belongs. I came back and gathered up my belongings, patted my forehead with my towel and headed for the treadmill. You know, sometimes walking's much easier than standing. At least for me.

Hmmmm....

So what does this video have to do with my blog? Well, come back tomorrow and you'll get the answer.

http://www.youtube.com/watch?v=-AphKUK8twg