I had a moment the other day, sitting outside the post office, waiting for Glenn. I was doing what I have been doing for a couple of years now; observing. I am mesmerized, quite honestly, and watch others with full mobility just move. The simplistic way in which they walk in, just moving to get from here to there. Barely a thought in their minds. They want to run, they run. They want to jog, they jog. So on, so forth. And I sit here, watching them.
I am drawn to young and old…the young that lock their knees on cue just for the fun of ‘walking funny’. …the old, and their slow and steady shuffle….a couple of adolescent girls that clasp hands and run as fast as they can to the storefront….the teens that are skipping and stomping and kicking as they walk….
It is just surreal to me. Do you know, I honestly cannot remember what it even ‘feels’ like, to hop on one foot? I am unsure how I would even begin to physically do it. Apparently, the lack of ability has caused some sort of amnesia.
Still, fact is, I used to be able to do what they are all doing. I used to do it effortlessly, and with little thought about doing it.
Perhaps before I get into it, I should dish out my MS resume:

1. Cannot walk without assistance. That is just a way of saying I need a fucking arm or a wall in order to keep from falling on my face.

2. Knees and ankles that give out with absolutely zero notice. Keeps going up and down stairs really interesting….also adds fun when I am at the sink trying to brush my teeth.

3. Spasticity…..OMFG. I am forever stiff, have chronic pain and when my legs move to walk….I actually kind of resemble the Tin-Man from the wizard of Oz…sans oil.
4. Numbness. From the waist down. You know, I am not even going to go there. Use your imagination.

5. Weakness and fatigue.
Well, I went an entire year of having an active diagnosis of major depressive disorder. MDD, for all of you DSM freaks.

6. Nystagmus…it has a ‘life of the party’ element to it…gather round, and watch my eye bounce.

7. Electric shock sensations, crawling bugs sensations….shit, a whole gamut of sensations that should be foreign to me. When my numb feet touch cold cement, they feel like they are burning. My demented, destroyed and dyslexic little nervous system. Etc, mostly etc.

Anyhoo, before this turns into a depressing heap of MS shit, I shall move forward. (moving forward….just makes me laugh)
Ok, so I have dogs…2 dachshunds and a GSD. My dachshund, Rocky, had a disc disease. An irreversible degenerative disc disease. His little vertebrae is basically mineralizing as we speak. He has been paralyzed twice, he recovered both times. Took him a while, but being a stubborn & fearless little badger hound, he did it.
Now, here is my thing: I am here, watching him. (This is when he was paralyzed. ) No matter what, he kept going. He didn’t let it stop him. I had a cart made for him, which he hated….he would much rather drag his little legs behind him than have them dangle from the cart. If you met him once, you’d get that. He is a noble & stolid little thing. A whopping 28 lbs of hell. Ok, so he would drag his little lifeless legs through the tall grass after a bug, or if he heard an imaginary sound that would cause him to speed off in a direction barking his head off. He never stopped enjoying his life. He kept his passion. Yes, his dog lust for life.
And I know…he doesn’t have the brain capacity for insight, he isn’t contemplative…he just was spurred forth by pure animal instinct. I know all of that. I am also aware that even while he was dragging himself around over the grass in the yard, my other two dogs never once said ‘hey, rocky…are you disabled? Do you need help? “

They never even noticed. Because it didn’t matter.
If only that were the way for us dumb-ass humans, huh?
Nah. And before anyone allows themselves to read my words as purely negative, or to view me as a complete misanthrope…keep an open mind. I am a realist. And reality isn’t all sunshine beams shining out your ass. And just for the record, not everyone wants you to shoot sunshine beams up into their ass either. Sometimes they just want to bitch and be heard and be done with it. Just like any other (based on assumption) chronic illness, there isn’t going to be a ‘happy day’ every day. That said, there also isn’t going to be a negative day every day. (*except for the Pollyanna’s and the total assholes….they are either all of this or all of that)
My MS has done a lot for me. In so many ways. It has given me excuse slip after excuse slip. It has given me a pity card. It has lacquered me with a thick coat of guilt that I can’t seem to shake off me, no matter how hard I try. It has given me people that do not know how to act around me, or has caused them to sound like a moron because they don’t know what to say. It has caused them to be ironic, and apologetic, and I seem to inspire the inner-life coach in a lot of folks.
The ones that say,:
‘well, it could be worse’. yeah, no shit.
‘things will get better’….really?
‘you have to keep positive’….mmmmm, that is one of my favorites.
‘everything happens for a reason’. great. So, basically some divine providence has some serous fucking explaining to do. So I then ponder my life, trying to mull over the profundity of my ‘sins’.
Nah, it is just something for them to say. We hold onto sentiment, warm fuzzies make us feel better. A positive attitude doesn’t make me walk any better. In fact, I am not getting any better.
But, all of this makes me a negative asshole. Then, after my reality crashes into someone’s sunshine filled daydream, I am the one comforting them.
I am not negative. I laugh when I think shit is funny. I read, paint and play with my dog. I gossip with my sister and we bitch about life. I am a college student. I have been in a relationship with Glenn since the late 90’s. I am passionate about art and music. I have beliefs, and hopes and dreams.

And, I have MS.

***Damon wanted a Jackass as his picture...he wasn't specific so I picked a local Jackass.


I won't take too long with introductions. I'm Damon. I'll be 29 this year and I'm a male with Multiple Sclerosis. I blog over at siiilenttbob.blogspot.com and… well, let's just jump right in to what I feel like talking about.

They say that misery loves company and that's totally true. There's something about knowing that someone else is just as knee deep in shit as you are. Seems to me though, when things get tough and we want someone to take some of the load, we look to our loved ones. That's a bit mean, isn't it? Shouldn't we reserve the bad stuff for those we consider enemies?

Makes sense though, because hell, they love us! Of course they're gonna help by taking what little burden they can off of our shoulders. Letting it rest on theirs. My question is, are we jerks for asking them to do such things? I guess that's love though, being someone's "company of misery".

I just find it so weird that I would want to take the best things in my life and have them active in the worst parts. Not only accept their help, but truly want them to be a part of that world. Some of this stuff can be kinda scary, you know? It can be a hard road, and a personal one at that, so to let someone in and let them see all the weirdness, that's a crazy burden to give, especially to someone you love.

I'm not one to let lots of people in, get to the core of me. I don't care to be fully exposed. At the point when I did decide to let someone in though, I chose to let them see something extremely personal. Something that I don't want everyone to see - My injection.

The shot can be a big deal to some of us. I know it is to me. So to reveal that side of myself, to be seen piercing myself with a needle, it was kinda crazy. And to see the reaction it got, the tears from seeing me do that...it was tough. I had taken my worst and introduced it to my most favorite person. In the end I think it was the best thing to do, but occasionally I think it was mean to want a loved one to be so active in my fight.

Maybe it's not bad at all. More like difficult. Difficult as a hell. If we're gonna live through it though, we might as well have some people there to hold our hands along the way. Fight the fight together. Screw David and Goliath. If instead, it was David along with all of his friends and family, Goliath would have gone down quicker. A lot easier too. Then afterwards, party time!

I’ve got some big ass shoes to fill by doing a little guest writing and I’m a little bit intimidated. Sometimes, I’m not the cleverest of folks, but get me on a good day and I can get a few laugh/confusing looks.

I’ve been a very bad girl lately. I’ll be honest about it. Honesty hurts sometimes and it isn’t always easy and neither is living with disease. Sometimes, it seems like it’s getting harder (That’s what she said, that’s what she said!!). First of all, to start off with my bit of truth telling, I will say that most days, I ignore the fact that I have an incurable disease. I’ve just made it sound like I have Ebola, haven’t I? Well, I don’t.  I don’t do my Rebif injections and I act like it doesn’t exist. Which is wrong. Very, very wrong, I know this! It’s not something I do intentionally. Would me saying that I’m a forgetful person make it sound any better? Well, I’m not that forgetful. Like I said, I’m going to tell the whole truth and nothing but the truth. I suppose I should introduce myself. I’m Danielle, also known as D, Woody (Please don’t ask), Tommi D and Yelle) and I’m 25 and getting older by the minute. Yes, I will be 26 in April and that disturbs me a little because I feel 18, MOST days. I was diagnosed with RRMS in May of 2008 (for those of you who aren’t hip to the MS lingo, that’s Relapsing Remitting Multiple Sclerosis). I went to an awful neurologist for my very first ever neurology appointment and when I say awful, I mean awful. I was alone. I was Very much alone at that first visit and I was scared to death. I had all the tests a person with numb hands and legs gets, but he said I was fine and maybe I was imagining. Which means, I have one hell of an imagination. This being said, I must also have super powers because when I bent my neck a jolt of what felt like electricity shot down my spine. Was I turning into one of the X-Men characters? Ugh, if I were only that lucky. I had MS, but it wasn’t relevant enough for him to care because he had other patients who were worse than me at that point so I was at the bottom of his list. Long story short, I now have an amazing neurologist who I haven’t seen in about a year and a half. I already said, I was a very bad girl, so for those of you who are thinking it, you’re correct! It was only 6 months, from the time of the start of my symptoms until my diagnosis. My mom was with me. I heard the words “there are several new lesions and I’m afraid you do have Multiple Sclerosis.” LOUD AND CLEAR. I didn’t cry. I listened to him talk about how I was going to have to inject myself and I could have kids if I wanted and this wouldn’t take away my life. I listened, but I was more worried about what my mom was feeling sitting next to me. I knew all along. I can google. I have googled and I still google all the time. I’m a google queen. I started Rebif soon after because as he explained it, normally I would have a choice in the drug I take, but because of the amount of lesions (7 new brains lesions, 2 of which were new…GO ME!) he wanted me on a strong drug.