Here is a little insight on the masterminds behind MSunderstood...and I use the term "masterminds" loosely.

Jackie Jackie[at]TheMSBlog[dot]com

    In the grand scheme of life I am no one important, just someone with a lot of opinions that I have no problem sharing. I am a 24yr old born and raised in the formerly great state of Michigan. Right now we have a lot of lakes and that's about all we have going for us. I was diagnosed with MS in Oct of 2006 and have been riding this train ever since then. It has been an unexpected trip and by no means a blessing but I'm doing my best to make the most out of it. I live on my own with my dog, Timo who is the cutest little shit ever. When I say alone, yes, I mean alone and I have no problem with this, in fact I probably like it more than I should. I own my own home and I pay all my own bills, like a big girl.

    Shortly after diagnosis I realized that, while being the most commonly diagnosed, there was little to no materials out there for the twenty somethings with MS. So I took it upon myself to start MS.Understood, the newsletter. That was a great outlet for me. I wrote about 6 issues and realized that while I had a lot of readers, it wasn't going anywhere. I got a few "fan" letters which told me they loved what I was doing, but frankly its damn hard to run something like that entirely on your own. So I gave it up as much of a bummer as it was.

    Just after I announced the end of the newsletter, I received a letter from Dana. Dana was bummed she missed the newsletter, but I let her know that if she needed anything she could write me. And write me she did. Dana and I wrote the longest emails in the history of the Internet for a few weeks before I became inspired enough to give MS.Understood another go. I've changed platforms, and recruited Dana for some help and I'm really excited to get things going again. And with that MSunderstood was born. I have also gotten rid of some punctuation and changed some capitalization...which doesn't matter to anyone else as much as it does to me. I am a lover of typography, and while I will typo all over your face, I love every thing that embodies good typography and anything that involves letters. I have my eye on some sweet letter drink coasters, you should buy them for me.

    I learned a lot in my first year of MS but there were so many things I didn't initially understand. My goal is that with MSunderstood those newly diagnosed can find a place where they feel less alone. I have never felt "so alone" with my MS, but I do know that until talking to Dana, no one in my life truly could understand, even though they tried. I don't feel isolated in my disease, but I often feel like there is a fine line between being lazy/complaining and have MS problems. A line that our friends and family often find very fuzzy. I do not know everything about MS but I do know a lot about what I've dealt with and also what others go through too. I am not a doctor, a writer, a scientist, a politician, a wife, a mom, or many other things. But I am a patient, an avid reader, a sister, a daughter, a girlfriend, and a friend. While those things may not make me licensed to speak my mind on MS, I sometimes feel more qualified than the people we trust to give us the facts.

If you need to stalk me on the internet you can find me here:
@Excusemydust

We're on facebook too..


Dana  Dana[at]TheMSBlog[dot]com

So this is my little mini "bio", although you won't be glimpsing into my soul or anything, here is a little surface skimming of me in the here and now...

I am a 27 year old living, working, and studying in my native state of Oregon. I suppose it's pretty appropriate that I make coffee for a living, being that we do love our coffee in the Pacific Northwest. I live with my amazing boyfriend of four years (and "amazing" isn't just an obligatory term), our two hilarious cats, and a not so hilarious, but extremely lovable wiener dog. I began back in school a few years ago, and just recently finished my AAOT (transfer degree). I am in between transferring schools and trying to figure out what the heck I want to be when I "grow up". I have loved studying world religions and am interested in furthering my education in this department, but I also love art, and lately I have become super interested in the idea of doing something with my education that may be of some "social" benefit to people. Who knows? Also, I am slightly sarcastic at times, so if I ever come off as a pessimist... well maybe I am, just a tad?! 

I was diagnosed with MS in December of 2008, which as I write this, wasn't so long ago. I have jumped on the drug bandwagon, and began shooting up with Avonex in February of this year. So far so good, but it's a bit of a mind-bender taking a drug that costs almost as much, if not more, than a year of college education (thankfully I'm currently insured). Add this to the fact that I'm not even sure if this drug is "helping" me in any way, and that makes for an interesting drug experience. With that said, I am hoping like crazy that Avonex will work to slow my progress of disability, and I'm determined to stick with it until I am convinced either way. 

Like many others following a dx, I have been doing a ton of research, and trying to wrap my brain around anything and everything MS. Unfortunately this can be a bit of a downer, and a little digging around on the internet for info can go a long way, often times making you feel worse about everything. Although I found some interesting forums online, the support was geared more towards older patients, or perhaps it was just that these were the majority people taking part in them. Either way, I was thrilled when I found a site on MySpace called MSunderstood, run by none other than Jackie. This was a place where people could sign up for her newsletter, which she had only recently closed up shop on, when we got in touch. The good news was that I was finally talking with someone who "got" what I was dealing with. Sure, we each have our own unique MS experience, but just talking with someone who I had some common ground with (i.e. we are both super awesome) was amazing. Thus the birth of this blog, and the hope that this will be a place of coming together for people in our age group who are dealing, day to day, with the ups and downs, ins and outs, of MS. 

Sure, I get caught up in some dark moments now and again, regarding my life and future with this disease, but at the same time, I am thankful for the one gift this has given me, and that is simply seeing things in a new "light" if you will. I have been able to sort of reevaluate not only the "what's" but the "who's" that matter in my life, and if this is the only gift I get out of the whole deal, so be it. Who doesn't need a swift kick in the ass now and then?