How do you know?

Last year this time, I had what I thought was a symptom. It was this crazy pain in my right shoulder, but it wasn't always the same intensity. And sometimes, it was very intense. So I came home and put my little hot/cold pack in a pot of boiling water (because that's how you do the hot part). And I put it on my shoulder. And it hurt really, really bad, way worse than before. So I put the little hot/cold pack in the freezer (because that's how you do the cold part), and it was much better. After a while, the pain stopped coming altogether.

Until about a month ago, when it started again. Luckily, I had an appointment with the neurologist scheduled at the end of April, so I waited, and when it came around, I mentioned this mystery pain. TURNS OUT, when pain is aggravated by heat, it's muscular (i.e. not related to the nervous system)! Best news of the week, for sure.

But that's not my point - that pain diagnosis can be made by the method of aggravation. My point is the confusion. I had no idea how to tell if this was nerve-related, and therefore MS-related, or something else. In the beginning, I spent a good amount of time trying to think if I lifted something heavy, or slept wrong, or if there was anything I could have done to strain my neck/shoulder to cause this pain. Because my brain still, strangely, thinks more like a normal person than like a sick person when I attempt to figure my body out. After a while of thinking these thoughts, I determined that it had to be MS-related because it didn't go away. (Turns out the PA (p.s. PA's are the best!) thinks it's related to the fact that my job requires me to stare at my hands or a computer screen for almost my entire day. Seems too simple, but hey, the simplest explanations...)

So how do you know what your pain means? There are two things I can recommend in the real world of finding stuff out: 1. Know yourself. Know your body. This is not a dirty joke. It's simply that you know when you are in pain, and when it's something you can't take anymore. It's that there is no one else who is going to be able to know when something is wrong better than you. Which leads me to 2. SEE YOUR DOCTOR!! It seems so obvious, but I'm often hesitant to see a doctor, and a lot of other people are too. And it might just turn out that you need a massage, a trainer, or a physical therapist, and not a crazy medicine or an MRI or an acupuncturist or some other nuclear holistic experiment. Or see your Physician's Assistant, because she's probably more available, and a little more user-friendly :)

Good News For People Who Already Have Bad News

The National MS Society sends out emails, about once a month, giving information on everything from coping strategies to treatment breakthroughs. I received one last week, the headline of which was "FDA Approves Drug for Socially Challenging MS Symptom." I should note that I get these emails on my phone, so I didn't get the entire subject line. All I saw at first was "FDA Approves Drug." Naturally, I got all kinds of excited. Another one?

Turns out, the drug, called Nuedexta, is for treating "uncontrollable laughing or crying." Really. I read the rest of the email in complete and total shock, not because this medication has been invented or approved, but because I had no idea that this could be a symptom. Apparently, this can also happen to people with ALS, and some other disorders. So, um, congratulations constant laughers and criers. I'm going to start taking your medication prophylactically, k?

What Knockers!

Teri Garr is one of my favorite famous people with Multiple Sclerosis. But we have two things in common.

The FDA is my friend!

Guess what! The FDA approved a pill! A PILL! Like, not a needle.

(Of course, it has so many possible side-effects that may result in my being turned into a frog with a liver disease and depression, BUT!!!)

The pill is called Gilenya. There are others in the works, but this is the first one that's FDA approved. The biggest draw-back is that it's an immune-suppressant, which basically means that while it helps me with the whole body-attacking-itself thing, it could make me more susceptible to other diseases. So I guess the whole "talk to your doctor about Gilenya" thing is in my future. But it's there, and it's the future, and it's not a needle.

Read More, from WebMD

The Merits of Alaska

My mother claims that she invented the phrase, although I do not remember her doing so. However, I do have a tendency to absorb things without knowing it, like a photographic memory of sorts. So maybe she did invent it.

The phrase to which I am referring is simple: "I'm moving to Alaska."

Why do I (or Mom) want to move to Alaska? The reasons are infinite. A few examples:

• In Alaska, you don't have to talk to people if you don't want to. That's because there aren't really that many people. And they'd have to trek through miles of snow to get to you anyway. So the likelihood that anyone will bother you is pretty slim.
• You can be fully self-sufficient. You can build your own home (igloo), make your own water (melt your igloo), create your own friends (snowmen or women), and you even have a natural refrigerator! (This is actually true. That Alone in the Wilderness guy did it.)
• Currently, I work at a bank. There aren't any banks in Alaska. When you want to buy something in Alaska, you just trade icicles with the local penguins. When you run out of icicles, you can melt some of your friends down and make more. And then you can make more friends. This means that a) I wouldn't have to deal with the stresses I have now, b) there will be no economy issues, and c) everything is renewable, including currency and companions. Alaska is a renewable resource.
• Levi Johnston, teenage father and aspiring pornstar/politician lives there. (Thanks Andy!)
• As a person with Multiple Sclerosis (did you forget what this blog was really about?), I am supposed to stay out of the heat. It can exacerbate exacerbations. I will not have this problem in Alaska.

My brother also tells people he wants to move to Alaska. I told him that he couldn't since I was moving there, but he made a compelling argument towards my allowing his move. If Tim moves to Alaska, and I move to Alaska, then we wouldn't HAVE to see each other, BUT we would have something to do, in case we get bored. We could avoid each other.

But for real, my friend from Alone in the Wilderness did move to Alaska on his own, and built his own house, and sent letters and home movies home to his family for years and years (in return, they sent him wool socks.) It's a fascinating film (compiled from those home movies, carefully edited, and narrated by his own letters and journals), which illustrates exactly what I wish I could experience. Except I want to do a lot less work. I am not interested in making my own doors and locks. I just want some solitude. Sometimes.

The Beetle

So last week, I was supposed to be getting ready to meet Evan for Indian food, but I was late, because I was watching this documentary. And it was beautiful, and funny and I fell in love, and so I now present my first little thing that makes me happy. The trailer doesn't really explain the whole thing, as trailers often do (or do not) do, but it's heartwarming but not sappy, and hilarious. HIGHLY recommend you check it out if you see it on your local PBS station.

THE BEETLE

An Education

If I'm going to try and teach people about MS, I should probably tell people what MS is, right? Here we go:
Multiple Sclerosis means, literally, "many scars." This refers to the lesions that are created in a person's brain and spinal cord as the disease progresses. It's an auto-immune disease, which basically means that the body is attacking itself. In the simplest terms, MS is when my immune system thinks that the outer lining of the nerves (called myelin) is an outside entity, something it needs to kill to protect me. So it attacks it like crazy. And it eats away at the myelin, causing the nerves to react in all kinds of different ways, like loss of feeling, heightened feeling, loss of muscle power, vision, etc.
MS is diagnosed not by one simple test, but by a collection of evidence that leads to a conclusion. In my case, I had numbness and tingling, which kept recurring in different places. This is the first sign in many cases. After these symptoms recurred enough, my neurologist did a spinal tap to look for specific proteins in my spinal fluid that are present as a result of the auto-immune process. The fact that those proteins were present, added to the other symptoms, led to my diagnosis.
The medicine I take is called an interferon. As the National MS Society describes it: "Rebif is a medication manufactured by a biotechnological process from one of the naturally-occurring interferons (a type of protein). It is made up of exactly the same amino acids (major components of proteins) as the interferon beta found in the human body." Do I know what that means? Not really. I know that it's supposed to slow the disease, but it can't cure it. And it's painful going in. But it works (for me) better than the last medicine I was on. Since everyone and every case is different, some medicines work better for some people. If this one stops working, the neurologist wants me to go on one that I have to take at the hospital via infusion once a month. Hopefully I don't have to do that, because it'll really screw with my social calendar. They're developing an oral medication as well, and according to a friend who has a friend who works at the University of Pennsylvania, the tests for that are going very well. The day I can take a pill instead of a needle with be the best day of my life.
The best things I can do to help myself are take my medicine regularly, get exercise (YUCK), stay out of the heat (I don't know why, but it's universally recommended...heat makes MS worse), and look out for changes. That can be hard sometimes, when a muscle hurts, and I don't know if I actually did something to hurt myself, or if it's the MS. Either way, I just have to wait it out. But knowing what's normal helps to know what's not.
Upside? I've been doing well for a full year now (as of yesterday!) and I feel like I'm getting stronger all the time, both physically and mentally. I find things that make me happy, and I do them. I have a friend to also has an auto-immune (one much more serious than mine) who gardens. There is nothing that makes him happier. And we discuss this all the time: it's the little things that count. You have to find your bliss, and follow it, as dumb as that sounds. So I take pictures. When I can't sleep, when I'm bored, when I'm happy, when I'm sad, I take pictures. It's a little thing that helps me along, and if no one else ever sees them, or likes them, it doesn't matter. Because they teach me something about myself.