Hang in there people. I actually have some relevant MS stuff to talk about. I swear.

Also as a side note, I'd like to let anyone who reads our blog on the actual URL website to know that our Facebook community is pretty great. There are a lot of people there and many of them comment often. So if you're not on Facebook or not following us, you should because its a great place for your questions.

So clearly, I have not been writing here a ton. Or at all actually. I realized the other day that I pretty much bitched for a year straight here about MS....then my life took a DIVE and I realized what it really was to have a tough time.  I realized that myself and many other MS people that I know get lost in the "what it feels like to have MS" game.  Meaning we all start to feel a little sorry/bitter for ourselves. Which I think is ok sometimes. I really do.

But.

I think often we get so lost in it, we end up in our own little worlds of "pity me". We may not think that we want others pity...but we do. We want them to acknowledge how hard our lives are. When in reality...for a lot of us....our lives are not that hard.

I mean really people, take a look deep look down. How much bitching do you do...just because you can? You have a scape goat for eternal bitching. Its called MS. But does that mean you should actually use it? I hate to make myself the model patient because I am far from it, but shit...I DON'T HAVE A COLON. No Really. Gone. Instead...I HAVE A BAG OF POOP. No really. Hanging there. All day every day. Now please tell me how much it sucks when your hand tingles.

I am not saying this so that I win at the pity game, but rather to show you, no matter how bad you think it is, there is always some ones who got it worse. Right now, it might be me. But even I know that there are people out there DYING from their conditions...I've just got some poop.

Don't get me wrong. I think its ok to throw a pity party every now and again. I'm super good at that. But I also know you can't move into your pity party. You have to get out of it. Realize that everyone gets dealt a bag of shit to deal with (some of us have a literal bag of shit). Everyone has their own stuff to deal with and work through. What makes us think that our problems are so much more over the top than other peoples? What makes us think that our condition gives us a license to cry and moan over our daily "struggles"?

Clearly Dana and I have lots of other crap going on. For realsies. But I feel like we have created a great place here for new people who get diagnosed. So I don't want that to die. I want to make our blog permanently open to people to submit articles to us, about whatever.

So please keep reading, and please keep writing. You'd be surprised how many people it helps.

On my other blog, I've had a shocking amount of responses, and it truly reminds we why we do this.

In major news, Miss Jackie Zimmerman has completed the first of her three UC surgeries, and as usual, is pretty much a star-fucking-trooper. 

So here's three things I absolutely loathe right now, followed by three things I love. Okay, three things I could currently live without would be utopian-feminist sci-fi novels (that's a mouthful), everyone who wears bluetooth ear pieces (I love replying to these people only to then realize they aren't talking to me at all, and how is it that this should make ME feel stupid? I'm not the one who appears to be practicing the art of self-talk out loud), and group projects in an online class (what the hell??). Okay, three things that I really love are the amazing flipping friends I have, my new passion for knittin' shit, and well, a life that's a little more lived in, every single day. And we're moving on...

So in an effort to elude coming into contact with the aforementioned things I loathe, I decided I should blog. I haven't done this in awhile, and it's a wonder Jackie hasn't kicked my ass to the curb yet. So I'm gonna talk about injections, and the fact that I no longer give them to myself anymore. If you didn't already know, I'm on Avonex, that once weekly intramuscular dose of the flu. 

No, no... I haven't quit this awesome disease modifying (you think, really?) medication, I've simply handed over the task of injectorizing to someone a little more steady handed. I've been on my drug for over a year now, and contrary to the neat little handouts or the awesome videos you get to watch when you're first beginning self-injections, it doesn't necessarily get any easier. I applaud those who stick a needle in their leg, for one week, or for years on end, and actually LOOK at what they're doing. I never did. I also never mastered the jab, but rather slowly pushed the needle in, tried not to squirm it around it my leg, until my boyfriend would shout, "okay, you can plunge now!" because remember, I'm not looking. 

I mentioned to the Cohan (my specialist) during my last visit that injections were gettin me down, and that I felt like handing the task over to someone else would probably be in my best interest, in order to actually stick with it. He suggested I have my PCP's nurse do it, and after a little research I found out this would cost me between $11-$40. I couldn't get a straight answer from my doctors office not only on whether insurance would even allow this, but even how much exactly this would cost weekly, so I let it go and continued on my own the next few weeks. But then I remembered a friend of mine who is currently schoolin herself to become a medical assistant, and was recently pretty jazzed to inform me that she was certified in all things shots. This dear girl actually wanted to give me one of my injections, and in a scramble to try and figure out how to get myself out of them, I had somehow forgotten this. So I mentioned my predicament to her, and she was like, "duh, I would LOVE to give you your shots!" So there we go, a miraculous coming together of injector and injectee (I know, that's not a word). She's been giving me the shot for four weeks now, and I couldn't be any more pleased!

I should briefly mention that the decision to have someone else do my injections wasn't super easy, as there's definitely a part of me that feels like I gave up. I am trying to keep in the back of my mind however that if the time comes that I need to start self-injecting again, I can do it. I just sorta suck at it. Handing over this task to someone else has taken some serious weight off my shoulders, and simply asking for help in the first place, isn't always the easiest thing to do. However I honestly believe not having done so at this point in time might have ended in me saying adios to Avonex completely. While I'm not sold on the drugs, as I've mentioned before, I'm choosing to stick with it for that slim chance it could be doing something positive.

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.

Here we are today…March 3, 2010. MS awareness month. I’m aware of my MS DAILY. I don’t always tell anyone when I’m feeling terrible or tired or just really damn irritable because what good would it do? Wanna hear some more truth? I have wonderful people in my life. When I first met my boyfriend, Josh, I didn’t want to keep things from him too long because I knew it would get serious and I thought who am I to not tell? I told him and he researched. WOW…I have someone researching for me. His parents came next and I liked them, I really, really liked them and I didn’t want them thinking their son would be “stuck” as I like to call it taking care of me, so he told them. They wanted to learn too and even went to an MS event to hear about new treatments etc. Oh what a feeling!
I could say so much more, but I think I’ve gone on for long enough. I need to do my injection tonight. It’s been almost two years and I still hate it. You wanted truth right? Josh holds my hand most nights when I actually do my injection. I come close to tears every single time. I’m tough. I like to think so at least. I am 5’3 or 5’4 of bad ass… .I’m not sure which and honestly I’m really not sure I’m that tough, but I’ve hung on this long and I’m okay. I met Jackie and Dana through this blog and I’m so glad I did. They’re amazing and I get a laugh, a much-needed laugh from them daily. I feel for Jackie because she’s going through so much and it makes what I have to deal with seem like nothing. Jackie you are strong and funny and you are going to kick UC in the throat!
So, for now, I’ll leave you with a few facts about me. My name is Danielle. I have MS. My 2nd toe is longer than my 1st toe (SHUT UP). I am addicted to wine and chocolate and anything with carbohydrates, so much so that I do a happy dance when I eat/drink these select items.  I like ignoring that I have MS sometimes. I didn’t say it was good, but I’m being honest. Life goes on and I’m learning that it HAS to be enjoyed. I’ve also found it takes a hell of a lot more energy to be mad than to just give in and be happy. Someone very special told me recently, “Why can’t you just be happy and look at the good?” I can and I will. Sometimes I just need to remind myself. Oh and also, I’m about to get insurance again. It’s tough not having insurance, kind of like living in the wild. Like I said, I’m tough and I’ll make it though until I get insurance. Like a good man named Dwight Schrute once said, “In the wild, there is no healthcare. In the wild is “Ow, I hurt my leg, I can’t run.” A lion eats me. I’m dead. Well, I’m not dead, I’m the lion and you’re dead.” C’mon healthcare!  PS: I’ve never blogged before so please forgive my back and forth on things. I type as I think and sometimes it’s just plain retarded.

Alright, so here we go. This is a relapse. Optic neuritis. Flashback to about three or four months ago, and the same damn thing happened. After some research I had a sneaking suspicion it could be ON, but I didn't call the doctor. So here we are again, same symtpoms in the right eye, just a little worse than the last time. I'd always assumed ON meant vision loss for sure, so this was part of my hesitance about making anything over it. Obviously vision loss isn't something I'm experiencing. My symptoms include pain with the movement of my little eyeball, and some loss of color. I can see just fine, which is more than phenomenal. So anyhow I decided to be a grown up this time around and call the doctor, was able to get in for an appointment yesterday, and now onto today...

Not so surprisingly, I am beginning IVSM treatments, and will have them completed in three days. The bum deal about this is that I know the steroids will probably make me feel worse than the actual relapse itself, which is super mild. However, Jackie made a good point about the importance of doing the steroids for an ON relapse just because well... I don't know. Hopefully it's cutting down on further permanent damage. She was right, the doctor was right. Off I go in about an hour here, for my first ever dose of IVSM. So I can look at this like an experiment, or something like that. Maybe the extra energy and lack of sleep will let me rock out some work in my classes? Maybe my house will be cleaner than ever by the end of the week? Or perhaps I'll just turn into the most rotten version of myself there is? We shall see. Either way, I'm rockin the roids. 

Hey all. I'm Lazy...and I'm super busy and my MS has been pretty sweet lately and not bothering me....Hence I dont have a whole lot to say here these days. Sooo..what I propose...is GUEST AUTHORS!

Anyone got anything they wanna say? Email me...and I'll post it!

I am SO comfortable in my humble job, making coffee. My job is literally my home away from home. When I have a day where my brain decides to take a backseat I can still get by. Run on autopilot. There are days where I may seem like a bit of a moron to the average customer, but the only harm in that is a small dent in what's left of my pride. What happens when I'm playing social worker? When everything I do each day isn't quite so ordinary? When I'm not just throwing some vanilla and espresso in a cup and adding some steamed milk (and a little foam) on the top?

Oh yeah, did I mention that I want to be a social worker? Yep. That's the plan anyway... 

So I'd say about ten percent of the time when I think about finally being finished with school, and moving into an actual (gasp!) career, I become a little fearful of the whole concept. What if the MS decides to act up a month or a year into having a new job? A job in which it will actually matter whether or not I have the ability to maintain some level of...I don't know, physical and mental capacity. Then again, we're only talking about ten percent "future jobbity job" fear here, so I am still functioning with ninety-percent "Woooo! I'm going to be doing something more meaningful for the human race than serving them coffee!!". What is the worst that could happen? Honestly.

I am actually working at not being totally self defeating. Especially when it comes to things I want to do with my future. I was pondering this today, thinking about how annoyingly positive I have been over the last few months. I wonder...am I being positive because I am physically, in terms of my MS, feeling pretty damn decent? Or am I feeling pretty damn decent because I'm being more positive? I only have issues with the latter. While I think being positive is definitely working for my mood, not to mention my relationships...I don't think the power of positive thinking is quite powerful enough to keep my body from eventually having a total meltdown again. 

Let's say six months from now MS decides it's time to really start fucking with me. Will I be starting right back at square one? ...self esteem into the shitter, fear and trembling over the future, woe is me city... I guess the goal then would be to make more of a conscious effort to practice all these little things that I've learned along the way this last year, and most importantly, in the last few months. As they say in alcoholics anonymous (or so I hear) I will just have to fake it 'til I make it.