Sometimes I feel like a flake. The crappy part about this is that flakiness is one of my biggest pet peeves. I cannot stand flakey people! I hate when people bail on plans or lack planning skills in general. I have unfortunately become one of those people. It seems like I never really know how I'm going to feel from day to day; be it my level of energy, brain fog, headaches...and the list goes on. When I think about how disappointed I become with people like me, it really sucks. I have this major complex about being the one who disappoints. Hypocrite that I am, I have been perpetually disappointed with people lately. I think it's true that what we can't stand in others is really just what we hate most about ourselves.

So I'm feeling the MS "flake factor" trickle over into every aspect of my life. It seems like the time in between feeling like a steaming pile of poop, is just not enough to make everything I want to happen, happen. Perhaps the geniuses who have told me that it's almost always Type A personalities who get MS are right? Somehow I find this doubtful, but perhaps I am too anal for my own good. It's like I have this ever growing list of things going in my head that I want to do not only for myself, but for other people. Unfortunately I feel like it's effing baby steps all the way, and by the end of the day I've barely made a dent in my list of things to do. Why is it that shit is just so overwhelming lately?! Have I always been like this, or am I letting MS make me feel like I can't accomplish everything that use to seem so easy for me?

On the social side of the "flake factor" I feel like I'm not exactly being the friend that I want my friends to be. One of the things that I have found so important for me is just feeling like my friends honest to god, give a shit about how I'm feeling or what's going on with me. The awful part about this, is that I do a terrible job lately of making sure people know how much I actually "give a shit" what's happening in their lives. I guess it's good to remember that I'm not the only person who has had shit hit the fan in the last year, in fact I don't know a single person who isn't dealing with some major life malfunction these days. Either way, I realize that social crap is a pretty important part of our "being" and it's something I definitely need to work on. 

The hilarity to all of this is in about five minutes, I might have myself convinced that I am conquering the world. I just wish these moments of self assured victory weren't so fleeting. 

In attempt to milk this infamous comment for all it's worth, I'm going to turn this into some three-party dialogue and use it as an excuse for some lame writing. As I'm sure is the case with Jackie, I would in no way discourage people from visiting this site, or commenting here. In fact it's been super exciting for both of us to read the comments and be able to sort of engage with others who are in the same boat. It's no secret, we love that people are reading this, and we love comments, no matter what sort of reaction it may be. This disease is messy, but so is life in general. We're talking about it honestly, and that doesn't mean everyone is going to agree with our individual opinions, ideas, or attitudes for that matter. I think most of us are "grown up" enough to realize this though, and I'm probably just sounding redundant now. Even though this is just the internet after all, I am with Jackie, and commend this particular reader for speaking her mind and for giving my lesion filled brain something to ponder on today.

So it was this particular sentence that got my wheels turning, "the younger your DX'd with MS, typically, the more you're in for the long run." My first reaction to this would be, "no shit Sherlock." But my point of "chiming in" here is that this sentence got me thinking about another aspect of being diagnosed young. Let's face it, getting diagnosed with a disease when you're ANY age would suck. Being a teenager or twenty-something or thirty-something however, doubly sucks. I fall into the "twenty-something" crowd, which in my particular case also puts me into the "still figuring it all out" group. I would like to add to this though, that I hope I don't get to a place when I am forty or fifty, of thinking I know it all. I would like to be constantly evolving, changing, growing, learning, what have you. That said, everyone seems to be really adamant on making sure you know that MS shouldn't keep you from doing anything you want to do, and not letting it change your plans. I like it when people who haven't been slugged in the gut with a runaway ball give you this advice. Sure, in the overall grand scheme of things, this disease is not going to change the WAY I live my life, as in what kind of human being I am going to be, but it's certainly changed a few of my plans. College is a good example. I wish I would have had my shit together and finished school say, five years ago, but I didn't. At 27, I am only halfway to a bachelors degree, and I didn't really have any huge issues with this until MS came along. I have had to re-think my plans for school. The university/major/career I had planned on are seeming less and less feasible to me with each passing day. I am now trying to figure out which ONLINE degree from a state university would be most likely to help me get a job that I could stick with through varying degrees of disability in the future. So there you go, I am indeed changing my plans for MS. The truth hurts. 

Another funny thing about being younger and being diagnosed, are the comments like "you're so lucky the doctors caught it in you so early." Again, they are generally coming at this from a place of compassion and care, and in this sense I do appreciate it. I cannot however deny that I find comments like these inwardly annoying, and now outwardly annoying via the internet. Minus some ideas about environment or viruses, we don't know how the disease develops, and according to my neurologist anyway, there isn't really any way to tell how long I have actually had the disease. What if they didn't catch it in me early, maybe I have had it for ten years and didn't know until the symptoms became such that I was able to finally be run through the gamut of tests and diagnosed. If this is the case, I would have rather started developing the disease when I was thirty, be diagnosed at forty, and started on a treatment that I was "sure" was keeping my disease from progressing. This wasn't the case with me however, and I'm not going to cry about it or anything... okay maybe I have, but not today. What. Ever. 

Life, with the addition of MS is still going to be thrilling, just slightly more messy. I for one enjoy sloshing around in puddles, but not every single day.

Today is a monumental day in the life of this blog. Today we have received our first complaint...rather I have received my first complaint. And to be clear, I am not posting this to make fun or be a raging bitch on the person who left the comment. But rather because I'm here to tell the truth...from all sides. I thought long and hard about not responding to this comment publicly, however, I ultimately deemed it necessary.

Here is the comment:
I do have a COMMENT on this entry. I've been in a foul mood ever since I've read it. I'm angry I guess because I see YOUR anger. Freedom of speech gives you the right to be a cynic and spew your anger on others. The same freedom gives me a right to comment about it, well that and YOU as a web mistress, I suppose. You've made me not want to help young people like you any longer. I give up. Be a cynic. I just hope you're on a good MS drug. And I hope you stay on it. Reality is, you have MS. Check. Second, you're progressing. Check. You have to slow the progression of your disease. Being a cynic and being angry about it and posting this stuff isn't encouraging anyone, in my opinion. It's defeating. It's discouraging. It's deflating. It's wrong. It's anti-MS. Talk to me when you see a black hole on your MRI because you wanted to run a cool website and send out a newsletter that made you look all that. What. Ever. Yeah, so what if you didn't jump into therapy ASAP! I did get therapy right away--within a month of my DX--within six months of having any symptoms at all. My MRIs have been very, very good over the past nine years. No black holes, no additional lesions, very little progression, if at all. I'm very lucky but I still suffer, a lot at times. You don't know. The younger you're DX'd with MS typically, the more you're in for in the long run. I was DX'd when I was 40. You have no idea... None. Keep being a cynic. You'll look back at this in 10, 20 years, when you're all grown up and wonder why you didn't get on Avonex or Rebif or whatnot back in 2009. Girl, you have no idea. I'm so sorry for you. And I'm really pissed that I care.

As much as I would love to be all NU UH, PRETENDING TO BE AN OPTIMIST IS STUUUUPPIIIDD. I'm going to attempt to be a big kid about this one. Heres what I think, first of all I am thrilled in a positive way that you do care enough to even write your comment. Most times when things piss people off, they often avoid it, turn a blind eye and never return. So while I see that my pessimist has totally ticked you off, I do hope that you continue to frequent the blog, as between my pessimism and "defeating and discouraging" talk, we have some good information every now and again.

To begin there are a shit ton of other "young people like me" who totally agree with the things that I have to say and many others who think it and are afraid to say it. The reality is those sayings to a younger, hip, intelligent crowd are belittling. I do not believe that those saying will help anyone do anything. If a person wants to be a positive person, and rise above this disease, a stupid glittery banner with "I am the face of MS" on it, is not going to be the thing that keeps them from going over the edge. I find zero inspiration in those sayings. While I'll admit I am a pessimist, I think more so I am a realist. A saying will not change the world...a MOVEMENT however will. Those sayings are not raising awareness, they're not changing anything. They just sit there...and fake shimmer across my screen.

Lets touch on your "reality check"  Yes I have MS. I, however, would not say that I am progressing. As I have stated before I am NOT on medication, and I don't intend to be. I have also had recent MRIs that show zero new lesions, and in fact those that I had are smaller. So I'm pretty sure that's the opposite of progression. Next, if my goals is to slow the progression of the disease, maybe for me, that includes getting out negative energy which involves writing about stupid MS related things. I may not take the typical medicinal methods to deal with my disease, but without any attacks in 2 years and a reversal of damage, I'm pretty sure whatever I'm doing is working. Not to say I don't have daily problems, but damn it that's nothing new.

I also did not post this website to encourage people. That is not my job. I am here to tell it how it is. No bull shit. No lies. There are a shit ton of other websites out there that lay on the optimism to no end. That's not what I'm here to do, and that's not me. If no one reads this website, that's fine with me, because it helps me. However, there are many actually who are reading it, responding to it, and agreeing with it.

Explain to me this "Anti-MS" comment? Yes you're right, everything I am doing IS anti-MS. I in fact hate that I have MS, so pardon me for not throwing a party with unicorns and balloons. If I were Pro-MS, I would think that would raise a bigger flag then the things I say. I am also, Anti-Cancer, Anti-AIDS, Anti-Diabetes...etc.

I don't understand how my running a "cool website" (thanks for the indirect compliment) will cause me to have lesions on my brain. I suppose you're referring to my negative energy, but again I'd rather put that on the interwebz than keep it all bottled up inside. And I did start on therapy right away, actually. I was on Betaseron within 2 months of my diagnosis, but after more research on my own and my own personal experience I decided it wasn't for me.

I may not be standing with you everyday, but for you tell me "you don't know" is a little silly. I do live with this too, just because you're older and have been riding the MS choo choo longer than I have doesn't mean I don't get it. Thats a little presumptuous, wouldn't you say? I also urge you to not feel sorry for me. I will not live with regret on my choices to stay off the meds, as that was not something I took lightly. You are right, you have been fortunate. You had 40 years before MS became a thorn in your life. Imagine if you had been in your twenties, imagine how that might have changed your thoughts, your views, your goals, your future. As you accuse me of having no idea, I think perhaps considering what this does to you mentally and emotionally in the prime of your life is something you have no idea about.

p.s. Thanks for telling me that my newsletter made me look  "all that". Best. Compliment. Ever.

There are certain things about MS that I strongly dislike. The medications are high on the list. The symptoms are right up there too, and the prospect of permanent disability doesn't exactly thrill me either. But the thing that bothers me the most...more than ANY other thing...is the stupid ass saying that people with MS use. Here are just a few of my own personal pet peeves.

I have MS, if does not have ME! - (This is bullshit. I know it is supposed to be a positive sentiment, but its a lie. You and MS are a package deal, and when it comes down to the end, no matter who you are...MS will win. We dont have a treatment that is guaranteed, yes it has you...by the balls.)

MonSter -(Capitalization in the miTTLE of a woRd is obnoXIous. I doN't care if iT heLPs you PrOOve a pOInt.)

We exist to make sure it doesn't. (I call shenanigans MS society. I'm pretty sure you exist and so does MS...someone over there isn't doing their job.)

Keep us moving toward a cure. (I am the official MS Debbie Downer, but that doesn't change the fact that a cure is highly unlikely. There is no money in the cure...the last thing we cured was Polio. That's because once you cure people, they don't have to spend anymore money. We will get treatments, but that is all. And no matter how much we all move, the cure/treatments wont get here any faster.)

I am the fight against MS (Nope. Liar. You are someone living with MS. You can "fight" all you want, but it will win in the end. We can work on quality of life and other things, but if your MS decided to poke out its asshole head, its going to. No amount of little sayings and annoying ass myspace glitter banners will change that.)


Ok. Whew. Glad I got that out, I can't explain to you how much those stupid ass little sayings get to me. Maybe its just because I don't think that a saying or a glitter banner will do anything. I don't think those saying really keep morale high, and I damn sure know that they do not help me feel better physically or mentally. You can help very few things with hope pancakes and butterfly sausage.

There is one, however, that I do like:
Join the movement

This says something. Its vague yet direct. It makes a statement, it tells you what to do without all the stupid ass extra bullshit. 3 words that have so much behind it. Get involved, spread awareness, help others. A movement is a powerful thing.

Some random online dictionary defined it as "A series of organized activities working toward an objective ; also : an organized effort to promote or attain an end". That's the kind of saying I want to be behind, something that is working for the greater good, something that will produce a result.

Very few things in history get called a "movement". But some marketing genius at the MS society gave us this term to use. Spreading around a glitter banner will not spread awareness or hope for MS. Being apart of the MOVEMENT will.

p.s. Stop sending me stupid glitter banners on myspace. I HATE those damn things and I will deny every single one.

p.p.s. If you love stupid sayings and tacky glitter banners, and think I'm a total douche for talking shit about them, send me a email. Get it all out there, I'm telling you it feels good.

Since Jackie posted a “rant” today, I figured I would follow suit, since I’m feeling slightly bitchy. 

So my main point of interest here is in the issue of how other people, who know absolutely jack shit about being diagnosed with a potentially debilitating disease when you’re in your twenties, that does in some ways, and potentially big ways, make you re-think your plans for the future, try to dole out advice which you didn’t ask for, or even insinuate that you need in the first place. Sorry, probably one of many run on sentences. So I was at a dinner the other night and the lady who was giving the dinner, who I “surface” know, but who apparently think she has some relevance in my life, looked at me in a totally condescending way and basically told that I need to make sure I don’t avoid doing things because of the MS. Wow. Now that’s some golden advice. Definitely something I hadn’t even thought of. Perhaps the fact that I had cancelled the dinner twice before finally dragging myself over to attend led to her to think that my disease was what perhaps kept me from delaying her pot roast dinner. 

So thanks to her, I will bring up the dreaded “future” issue that has become a staple in my food for thought bank. When I think about the idea having children, I think about how my disease may “potentially” affect their life. When I think about finishing school, I think about how a relapse one semester could “potentially” fuck up my grades. When I think about the future years spent with the person I love, I think how about this could “potentially” affect his quality of life. These are the realistic facts being diagnosed before you have accomplished all of these stereotypical “musts”. I am not however wallowing in self pity, telling myself that I can’t do this or that. I am realistic, I do not live in la-la land, and I do not feel sorry for myself, I am simply truthful. I do not have plans, and will not ever, give up on “doing things”. I don’t think that having MS is grounds for giving up on “doing things”. Do I think it’s grounds for perhaps not getting on the treadmill everyday. Yeah, I do. Is it grounds for taking a nap every now and then? Yeah. Have I ever talked to her about even having MS in the first place? No, I have not. So for her to come out of left field with a little friendly advice about the grapevine news of my diagnosis, was completely uncalled for. I didn’t ask for it, and if there is one thing that people who actually LIVE with a disease do not want, it’s advice on how to live with it, from someone who doesn’t have it, unless perhaps you’re an over payed, undereducated doctor. Here’s what we do want, someone to listen, and only when we ASK them to listen. I choose my listeners wisely.

So my advice counselor for the night apparently has a sister with MS. Mind you her sister, like her, is in her late fifties or early sixties. Apparently when she was diagnosed, she was the “suffering saint” who kept her illness a secret for five years. Is this what is expected of people who are diagnosed? Is there supposed to be more pride in a person who hasn’t felt comfortable enough to share their issues with even their family, or perhaps felt that they are protecting them from worry or hurt? These may not have been her reasons for keeping her diagnosis from her family for so long, but I will safely assume that they are reason for some. I however didn’t appreciate the again, condescending way in which this was said to me, as if sharing the diagnosis with my friends and family somehow makes me weak or looking for sympathy or pity. In my family, we communicate. We fart in front of each other, we scream and argue, and we have issues, just like every other family on the planet. If there is anything that bothers me more than life itself, it’s surface fake bullshit. I am thankful that in my family, this only happens with the extended members. 

Now let me just state here, as a sort of disclaimer, that perhaps this advice really did come from the bottom of her heart, or what have you. It isn't that I don't appreciate the thought, although it did unleash some perhaps unnecessary rage in me. Still, there is this huge element of ignorance or non-kosher behavior in this, I think. I suppose I could have found myself in the opposite position here, if the tables were turned. Maybe I would try to give someone some super good advice on how to act in the face of their newfound neurological disorder, if I didn't already have one. Having one however, has forced me to quickly learn who I will kindly accept advice from. I have learned so much about the kind of friend, sister and daughter I want to be not only now, but to someone else when a similar "shit card" ever gets dealt in their direction. 

I would venture to say that MANY people shortly after diagnosis sign up for some sort of MS event. I did a walk which I think may be the most common but there are also bike events, runs, marathons, golf events...and so on. I think "getting involved" is part of the acceptance process. I think its good for everyone to do it at least once. I had a stupid experience, which I may post about later but nevertheless, I've done it. As we all know the main goal of all this is to raise money for MS. So we all go out soliciting our friends and family members to help us raise money for this personal and ever so important cause. That's all fine and dandy.

But here's what seriously annoys me to no end. I have a big problem when people with MS...ask other people with MS for donations. Maybe many people haven't had this experience, but because I've run the newsletter and have the myspace and all that jazz, I get link after link after link to so and so's MS Walk page. I was just on a local chapters Facebook page and saw a post by someone with their own personal sob story...and I just thought...no one here buys it. We all know what you're going through, yea it sucks, but if I'm walking too I'm not going to give you a donation. Maybe I feel this way because I'm young and poor. But I can't see a cancer patient asking another cancer patient for a donation to the 3 Day, ya know? Am I out of line here? Is it totally acceptable to shamelessly ask people who share your disease for their dollars?

AND if you are going to give me a link to your damn walk page...at least make the effing effort to change the default text on the page. Jesus people, we're trying to raise money for our cause. This is about making it personal. Now IS the time to tell your story and help people understand, so the default text the MS Society puts up there (which is nice and informative) is not going to sell you. And lets face it, this is about selling your disease. Selling your story. 

Atleast I had the decency to change the default text on the walk page AND, get this, in the thank you letters to my supporters. There is nothing worse than getting a generic thank you after you've donated 25+ of your hard earned dollars. These people care about us, they are just handing over their money to us. Take some fucking time to actually thank them.

ok. done.

Now go donate to Dana's Generic Default MS Walk Page.  Suckaz.