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. 

I very well may be starting a shit storm with this one. I am about to speak opinionated about something I know little to nothing about, but I do it out of jealously.*

I read Dooce.com almost everyday. Shes a "mommy blogger", who is also part of Momversations and if you're a mom I highly recommend reading both. I am not a mom, but find Heather (dooce) highly entertaining, informational, and also enlightening. Momversation as well as Heather recently did a posting on vaccinating your children and the choices parents make about this. While there is SOOO much I have to say about this, I'm going to leave it at, I think you should vaccinate. Period. And I'm not going to go into it any further.

But what I do want to touch on, is that the parents that choose not to vaccinate (by fear of Autism) are obviously so willing to take on other things. This is what I do not understand. For instance, Polio. Wow Polio sucks, peoples lives were changed, and people died. We have a flipping CURE for polio, that people are now denying their children. And it made me wonder...lets say by some twist of fate we find out what causes MS. We create a vaccine for it, that is administered to our children. If there was a CHANCE that vaccine would cause something else...say Autism**...would you pass on it?

Maybe we find out MS is just like polio. What if everyone is susceptible (which we sorta know is false anyway, but entertain me) to getting MS, and this one little shot when were 6 months old will make sure we have NO chance in ever getting it. Sounds amazing, right? What if the MS vaccination caused Autism, or cancer, or could possibly cause hell, even Polio?  At this point in your life, if you could make this decision for your kids (or future kids) would you vaccinate them? If you could protect them from MS but would open the door to something else would you do it?

We know what we get with MS right? We know little, but we know for the most part what life will entail from best scenario, to worst possible scenario . For most of us, it sucks but yea its totally do able. Is it easier to deal with what we know, or hope for the best with the possibility of uncharted territory?

On the flip side, what if you chose NOT to vaccinate, and MS is a virus which is air borne (which, frankly, is kind of a possibility) and you take your child to the pediatrician. There are a bunch of babies and old people (why are there old people? I dunno. Its grandparents day or something), what if your child who is unvaccinated is now silently carrying MS, and passes it onto these other people. These people all get MS, and there is an MS outbreak because of one child. Sounds crazy right? Wrong. This kind of shit is happening with measles and the whooping cough because of all of these people who are not vaccinating their children. Here in 2009 we have having measles outbreaks and people have died. CRAZY.

What if you're a kid who gets polio or something and you can't walk, all because your parents were afraid of you getting something else? Can you say, resentment issues?

So now I've babbled, and probably totally lost you at this point. BUT I guess what it comes down to is, how far wold you be willing to go in order to protect those your know and love (and even some you don't) from MS?

For me, I really don't know. My MS is very mild and not very aggressive. I am "lucky" when it comes to the MS train. If it were me, would I pass on a future of MS for something else say Autism? Nope, I'll take my MS please. What about cancer? Nope, MS please. Polio? Nope MS please. Sometimes I need to be reminded to get my head out of my ass and stop feeling sorry for myself. 

If there was an MS vaccine that caused maybe like a fever for a few weeks, or a cold or something like that..yes, I would then vaccinate. I guess it just comes down to what is the lesser of the evils?

Ugh this post is total shite.

*Why am I jealous? Because there is a cure for these little illnesses. I was vaccinated and I didn't get any, except maybe the chicken pox. I'm jealous that there is no vaccine for MS.
**The arguments state that the MMR is the one that allegedly causes Autism...so I am giving scenarios here...don't write me about how wrong my research is.

I have a lot of new ideas of entries for your reading pleasure, however am not really in a research kind of mood. So instead I'm going to talk about my super sweet sign language class that I started last night. I have wanted to learn sign language for a really long time and there was a community ed class that became available so I jumped all over it. While super geeked about this class and really excited to learn something new (I know, I like to learn, how laaame .) as the class grew closer I became increasingly more nervous that I wouldn't be able to actually learn and retain the information in the class.

As that class began and the teacher started talking I was listening like I had never listened before. Like this was my last chance to ever learn something again in my life. I started really thinking about the what-ifs. What if I love this, and then one day I can't move my fingers enough to sign? What if I can't retain any of this information and my goal of learning this new and exciting thing is totally lost? What a drag.

Well the class moved a long and turns out I really liked it. I wanted to know more instantly, and while my brain wasn't exactly the sponge it once was I learned a lot. I practiced when I left and even this morning on the way to work finger spelling random words. I can't remember the entire alphabet but I remember almost everything we learned last night. Its going to be tough, and I'm going to have to actually study which is something I NEVER did in high school or college. I gotta tell you it was WAY easy just having everything be easy and never studying, but for the first time for me learning will be hard. It will totally rewarding, as lame as that sounds, but its going to be damn hard.

Its sad that at 24 I already feel like I'm not capable of learning new things. If can't remember things I already know, how the crap am I supposed to learn something new? I'm not really sure, especially with the vast hole that my brain seems to be at times. I don't know. I'm thinking about taking small videos of myself after each class doing the signs that I learned so I can remember, because taking notes doesn't really help with sign language. I think that would be beneficial and I guess that's what its all about, learning to use things in new ways. It seems like more so than ever I'm under the "if you don't use it you lose it" mentality. Which is why I try to write by hand and type a lot everyday because I know that skills have been lost since my teenage years. Hopefully I can learn this language, remember it, and be able to put it to good use.

So as I embark on this new journey, new language, and new community, I'm really excited, but also terrified. We'll see how it goes!

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.

It is simultaneously wonderful and frustrating to have a disease that can be invisible to others. I suppose if you're going to get a disease, having one that lets you blend in with a crowd the majority of the time is a pretty great thing. While I'm sure none of us would trade our disease in for one that was blatantly out there for the world to see at all times, the invisibility of this disease can not only be a source of personal frustrations, but also serious misconception. 

So what are some of the wonderful aspects of the invisibility of my MS symptoms? If I go out and look for a new job, I don't have to tell my potential employer that I have MS. When I am out and about doing daily shit, I don't have a stamp on my forehead that reads "I have lesions on my brain". I physically appear no different than I did one year ago when MS wasn't even a part of my vocabulary. My body however is telling me otherwise, and at times I find myself uber frustrated with the fact that I feel like crap but "look so great".  

In the last four months, I feel like I have morphed into some sort of electronic gadget that's constantly plugged in. When I get off the treadmill, my legs feel like a crappy laptop trying to power on. When I'm walking my dog and decide to do a little sprint (meaning the dog is most likely chasing a cat) the legs go haywire. When I'm at work and find myself overheated, I start to lose my balance. When I get out of the shower each day, the base of my spine and the bottoms of my feet tingle for a good half an hour. These are all totally manageable symptoms in my book, because it means that I'm walking, I can see, and I can swallow my own flipping food for that matter. Manageable or not however, there are times where I just feel like complete crap, and I hit my wall. As a 27 year old who by most standards would appear as the picture of health, it can be hard to try and explain this stuff to other people.

While I don't exactly worry about trying to relay the way I feel to joe blow down the street, when it comes to my friends and family, I do want them to sort of understand where I'm coming from. I am learning however, that this is something that isn't going to happen overnight. I don't believe though that it isn't for lack of trying on most peoples part. It's just hard to understand something you don't experience firsthand. I would probably think someone was full of shit too if they told me they felt like their brain was "buzzing". Brains aren't suppose to buzz! 

Aside from feeling personally misunderstood, invisibility also plays into the whole disease being misunderstood in general. Although a lot of us share the same types of symptoms, none of us experience the disease the exact same way. Symptoms and severity range from those living with MS which is benign, to a more progressive form that can be totally disabling. There is large gaping hole between being symptom free and being in a wheelchair, which I think many of us fall into. Images of this disease in major media seem to play up the more severe and disabling aspects, which isn't exactly telling of what MS always is. People are being shown an MS they can see, and the fact is, you can't always "see" it. Although MS isn't the only disease on the block which is sorely misunderstood, I think it is important that we work to at least make sure those closest to us have a decent idea of what MS is and what it is not. We don't have to tirelessly complain, and I know it's a given that most people are probably not going to "get" how it feels to be us. I don't know how it feels to be a tomato, but I certainly know what it is. We don't have to educate the world, but I guess educating those around us might help the cause just a bit. 

I have been going to the "fitness center" diligently. I have been working my proverbial ass off.  I am in there 4 times a week, every week for the last 3 weeks. I have completely changed my eating habits. They still aren't great but I think they're much better.

I have a fruit based protein shake for Breakfast. A large lunch, essentially a salad and any other food I desire, but mostly something of the sandwich nature. I work out after work for almost 1.5 hours a session and then I go home and eat some yogurt with granola and maybe an apple or something. So, not a lot of calories, and my major intake is lunch. I kept feeling like crap after I'd get home from working out and eating a huge dinner at like 8pm so I changed it all around. It been working out great so far.....except....I'm pretty sure I'm just as fat as ever.

Now I'm not pulling the "I'm so fat" girl card. I'm seriously talking about being bigger than ever, and feeling like poop about it. The workouts I'm doing are harder than any other I've done. I'm doing them more often than I ever have, and I feel good about it and after it. The work outs are getting easier. I have not attempted that last class that made me feel like a fool again, but I will, someday. 

Now I know its only been 3 weeks. And technically, I haven't weighed myself or measured anything. My weigh in is next week. But I was hoping to feel better, and maybe, just maybe see a SLIGHT difference. I'm not totally unrealistic with my weight loss goals, and I'm taking about 75% of the steps in the right direction, but its just feeling like its not working.

I hate to "blame" MS, because I could be totally making this all up, but damn it feels like its MUCH harder to lose weight in the last two years since diagnosis. I don't think its like a mental block, but its just like something is in the way. I have found it nearly impossible to drop the weight after IVSM treatments. I feel like my MS, is like baby weight. I just can't seem to work it off.

So I have this pair of pants that I talked about yesterday. Which in 2007 were literally falling off of me. I am now wearing these pants, and rocking a serious case of a muffin top, because they are the only nice pants I own that I could even Squuueeeezzzeee myself into. Embarrassing, but hey we all know I'm here for your amusement. Putting these pants on is like the biggest reminder to keep going to the gym. I hate muffin top. I hate having shit that doesn't fit. But at the same time, is it wrong for wanting them to fit at least a little?

Can I blame this on my lazy ass? Can I blame this on my MS? Why does it feel like no matter what I do, I have a one way ticket on the weight gain train. Choo Choo.