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.

Small Celebrations

I decided to do the first entry here on the first anniversary (well, the day before) of my going into the hospital for treatment of my Multiple Sclerosis. It's a way for me to look back and remind myself, not of how crappy most of this last year has been, but of how much I've accomplished, and of the journey to here.

A little background: (I'll try to be concise here, although I am not generally so, but leaving out details will allow me to have more posts later! Also, most of the people reading this already know me, so they know the story. Anyway...)

I was diagnosed with MS in March of 2007 after first having symptoms in August 2006. I had a lot of numbness and tingling (like pins and needles) in my feet, which then appeared in my hands, and eventually up and down my left side. I went to the neurologist, who did a bunch of tests, and some MRIs, and eventually a spinal tap in March. The spinal tap wasn't so bad, but I ended up bedridden for 2 weeks because I didn't heal properly, and I had the world's worst headache, because my spinal fluid was leaking. I was put on Copaxone, a medication that was injected every day. I had little exacerbations here and there, but nothing major (usually just new sites of pins and needles), and a new MRI every 6 months.

Last June, in the middle of breaking up with my then-boyfriend, with whom I was supposed to move to New Jersey, I had a scary set of attacks. (The breakup left me with several problems, including a new lease they wanted us to pay $7000 to break, the task of informing several members of higher management that their hard work to find me a job in another state was useless, and nowhere to live, since I'd already given notice to my landlord. In essence, there was a lot of stress involved.) Without warning, my right hand would seize, and then the rest of the right side of my body. It only lasted about 20 seconds every time, but it kept happening. The neurologist sent me to the ER, where I was admitted, and put on IV steroids. (My dad says that now, no matter how well I do on my own, I will always have an asterisk next to my name.) I was there for 4 days, and then had a week off, when I tried to regain my strength. Then I went back to work.

Now I'm on Rebif, which I inject 3 times a week. The side effects are a lot worse (flu-like symptoms for 24 hours, feeling hot all the time, fatigue, etc) and the bruises are nasty. But I haven't had any new symptoms, which is good!

So that's the story, nutshell-like, or as nutshell as I can make it. The blog is really about 2 things:
1. To inform people about multiple sclerosis from a personal point of view. If you have questions, ask them! I feel like this is a disease that not a lot of people know about, (a co-worker asked if I had to take calcium supplements. I informed him that was Osteoporosis. Sounds the same, but not the same.) and maybe they should!
2. The title! In the last year, I've been through a lot, not just with the MS, but a whole crapload of other crap (if you are curious, maybe you should continue reading!!) and it's taught me so much about myself. Mostly, that I need to pay attention to the little things. Those tiny things in the world that make me happy are what makes living (with or without a disease) good.

So I ask you to join me in celebrating my recent successes (I haven't been in-patient in a WHOLE YEAR!) as well as those little things that make us happy. Hey, thanks.