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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.

 
A New Low 10/11/2009
 


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So here I am  2:46am...awake as usual. Normally I don't get suckered into infomercials...don't get me wrong, I like to watch them, but I never call or order or anything like that. However tonight, I got suckered in by one. Luminess Air. Its an at home airbrush makeup system. Now this sounds like the ultimate cat lady purchase. However, I assure you it looked really effing cool. So I came here to the handy dandy Mac Book Pro and did some research on the cost and all that jazz and found out this little zinger costs about $180 bucks. Which to be totally honest, if it was as cool as they said it was...I would be all about paying for it.  And I sat here for about 5 seconds and thought...I need this. I need to feel pretty again.

And then it hit me.

In between figuring out how I could swing a totally random and unnecessary $180 impulse buy...and finding my credit card...I realized something.  My god...I feel this bad about myself right now. I have expressed how awful I feel about how I look lately and its has all culminated to this moment for me. Fucking infomercials with a promise of pretty. I feel so far out of my own skin these days. I feel so unlike myself, so like another fucking person trapped in this body that is so not mine...that I want to pay $180 to feel pretty again.  Now I don't know if this is just a staple of being a woman and feeling pressure to always be beautiful, or if this is really all about my health and how it makes me ugly. But I feel so...just..eh. I'm mad at myself for getting this down about how I look. I'm mad that I have to look this way. I'm mad that I'm getting suckered into infomercials with promises to make me feel good. I'm fucking mad that its gotten this bad. I'm mad at the drugs. I'm mad at the doctors. Damn it...I'm so fucking mad about the way things are right now.

I'm mad that I resort to my blog and just bitch to you all because I feel like so many people don't get how deeply rooted this shit is for me. No one understands what its like to look in the mirror and not see your own face. To not recognize yourself. To know that everyone who knows you, is thinking about how different you look all the time. To know that people are talking about you. To have a co-worker say to your face "Hey, do you know you're gaining weight?". Yes. Thank you. I am full aware.

I want my identity back. I want my face back. I want my life before all of this. I want sleep and confidence and to not worry about whether or not I'm going to end up in the hospital again. I don't want to have to worry about how soon I should make an appointment at the wig shop because my hair is still falling out. Or if I should just go balls to the wall and shave my head...and then if I shave my head will my boyfriend still like me. I want to be 24 years old and be normal. I want to not be sitting at my computer at 2:55am...crying about how shitty things are. I want to not be such a damn baby about things and keep on truckin' because you don't choose the hand you're dealt. You're just dealt.

 
 

Yesterday marked week five of being on Avonex, and week one of me NOT injecting the medication myself. Originally I had planned on having someone else do the shot for me, but the chosen few who I would have been comfortable handing this task over to, were less than thrilled about the idea of jabbing me. So I decided that I was okay with giving it a go on my own, and after training with the nurse, I was totally comfortable. After practicing for a bit, I got my meds ready (I do the powder form) and stuck my little one inch needle in the syringe. Before anybody could even catch it, I had stuck it in. I didn't even flinch, and really didn't feel a thing. The other great part about this whole deal, is that I haven't had many side effects to speak of. I'm not sure what this means, but I'm not complaining. Anyhow, back to how I had zero issues week one. By week two, it was just a little bit harder, and the same deal with week three. I did start feeling the injections. Granted it wasn't like someone was sawing off my leg, but it was definitely irritating. Week four I had my first major mental roadblock, and jabbed myself, took it out, and had to re-jab. In between the re-jabbing, I got up and sort of paced around the house, saying out loud, "I don't think I want to do this anymore". Within a few minutes I had gotten over the shit fit, and gotten it done.

So week five was sort of the same deal as week four, only magnified by about ten. I sat there for an hour, just trying to get my hand to stick the needle in. I just couldn't do it. I tried deep breathing. I tried visualization, my version of it anyway. Andy attempted to sing "Eye of the Tiger". I took a smoke break. I paced around the house. No luck. At the risk of sounding like a total lush, I ended up guzzling down four shots of vodka. Well two and two, and mixed with a little tonic, okay! My training nurse had actually told me during week one, that some people like to have a drink before their shot, because it can help them relax. Actually, she only told me this after I had made the joke about the idea of drinking beforehand, but whatever. So I am a total lightweight and when I do have a drink, I normally have one or two, and guzzling isn't involved. So after the first drink, I was like, this wasn't enough, I'm not loosening up. So Andy made me another. I downed this one, and still couldn't get my hand to stick the needle in. I started getting frantic, just because I couldn't turn back now. I was debating on calling my doctor and seeing if their was a nurse in who could give it to me. And then I had a lightbulb moment, and realized that I had a nurse right next door. My awesomely fantastic neighbor Kathleen, who is a nurse at the most appropriate place for dealing with someone like me, the state mental ward. It was right around the time she normally got home, so I sat around for a few minutes watching the window for her to pull in her driveway. Before she was even out of  her car, I was at her driver side window. 

She opened the door of her car, obviously seeing that I was distressed. My hair was a mess, I was wearing pajamas and thigh high socks, with the left leg of my pajamas pulled up so as to expose my shot area. I had a little orange circle drawn where I wanted the needle to go, which is something I've always done. I guess this makes it sort of seem like I could be playing darts. Ah, fun and games! So I immediately welled up into tears and starting drunk babbling about how I just couldn't do it this week, blah blah blah, and I really needed her to come over and give me my shot. She told me to give her fifteen minutes to get the dog inside and what have you, and she would be over. So she gets over to the house and by the time she sits down to give me the shot, I'm well aware of my level of drunkenness. As she got everything ready, after lecturing me on never leaving my needle exposed, which I had done, for over an hour at this point, I fell over on her shoulder. She jabbed me super quick and I was so stressed out that I jumped and was sure she would have to re-do. Nope, she was done. I couldn't believe she had it done in like, three seconds. When I do it, I stick it in, sit there for about two seconds, pull back, and then sloooowly press down on the syringe. I'm always super slow, which leaves more time for freaking out. 

Afterwards, she sat with me for awhile, and had me practice on an orange. Although I was drunk, it was helpful. We sat and bitched about the medical industry, and insurance companies, and she told me a story about one of her craziest patients ever, "the screamer". We take pride in our state mental ward, as One Flew Over the Cuckoos Nest was filmed here. Anyhow, I honestly have the coolest neighbor on the planet, and I am so thankful for her. If she wasn't around, I'm not sure what I would have done. Although I know I would have gotten the job done one way or another, it would have been way more hellacious. The mental anguish alone was enough to make me fear my fricking legs would go numb, or maybe one of my eyeballs would decide to quit working. Ugh. I don't know if it's worth the trouble of trying to be all tough, and do it on my own. 

Kathleen said she would come over again, next Monday night, and work with me on the orange again. She doesn't want me to give up on the idea of doing it myself, but honestly, I really want to. We shall see. If nothing else, she said she wants me to watch the needle next time, to work on desensitizing myself to the whole deal. Even though I spent the first four weeks doing it myself, I have become progressively more petrified each week. It seems like I am going backwards here, although my training nurse warned me that this is something that could potentially happen. I figured that was a bunch of BS, I think I got a little too cocky. 

Either way, I am thankful that I have an awesomely cool nurse for a neighbor who is willing to help out.